DD Medicaid Pre-Service

REQUIRED PROVIDER TRAINING
FOR MEDICAID WAIVER SERVICES
(5123:2-2-01)
COMPLETION TIME: 8 HOURS
House of New Hope (revised 3/2010)
1

Overview
 This eight-hour course covers all areas required by
5123:2-2-01 - Provider Certification. This includes:
 Understand basic concepts for serving individuals with
developmental disabilities
 Learn the rights of individuals with developmental
disabilities
 Understand the basic principles and requirements of
providing home and community-based waiver services;
 Requirements for incidents adversely affecting health and
safety; and
 Universal precautions for infection control, including hand
washing and the disposal of bodily waste.
2

Objectives include:
 The foundation for the information that providers of Medicaid waiver services will need to
be knowledgeable about providing services and supports to individuals with disabilities,
 To gain a basic understanding of current philosophies and best practice for working with
individuals with disabilities,
 To understand the individual service plan (ISP) and the responsibility of providing service
in accordance with the plan,
 To have an understanding of MUI’s and the provider’s responsibility for reporting MUI’s,
 To be aware of what bloodborne infections are, how to prevent illness from bloodborne
pathogens and how to handle contaminated matter, and
 To understand Medicaid waivers, documentation requirements, reporting requirements and
where to find forms and additional information.
 This competency-based training requires the applicant/employee to take and pass
a multiple-choice quiz at the end of the training—100% accuracy is required. The
applicant/employee will be allowed multiple attempts to take and pass the quiz.
The quiz contains questions from all resources provided in the course.
 The course contains a narrative section and numerous required reading assignments
including articles written by experts in the field.
3

What is Developmental Disability (DD)?
4
 The term ‘developmental disability’ includes a wide array of disabilities that
includes mental retardation. Examples of other developmental disabilities include:
vision impairment, hearing impairment, cerebral palsy, autism and others.
 Developmental disabilities are defined as “severe chronic disabilities that can be
cognitive or physical or both. The disabilities appear before the age of 22 and are
likely to be life-long.”
 “Cognitive” disabilities are those disabilities that are related to thought processes
and the ability to comprehend and respond to what a person hears and sees. This
includes such disabilities as mental retardation/intellectual disability, learning
disabilities, Asperger’s syndrome, brain injury and others. A person with a cognitive
disability may not be able to process information in the same way or as quickly as
a person who does not have a cognitive disability.
 Because cognitive and physical disabilities can both affect one person, providers
will often work with people who have both types of disabilities.
 Some developmental disabilities are purely physical, such as congenital deafness or
visual impairment. These are not intellectual disabilities. Other developmental
disabilities can be caused by cerebral palsy, epilepsy, autism or other disabling
conditions. These conditions might or might not include intellectual disabilities.

5
 Still other developmental disabilities can result from chromosomal disorders, such as
Down Syndrome and fragile X syndrome.
 These instances could well include intellectual disabilities—but not always. For
example, according to the Centers for Disease Control, males with fragile X
syndrome generally have mild to severe intellectual disabilities, whereas females
can have average intelligence.
 On the other hand, some causes of intellectual disabilities are not physical. These
include social & environmental factors such as the level of interaction & stimulation a
child has during the developmental period and educational factors such as the
availability of family and educational supports that promote mental development
and greater adaptive skills.
 Some disabilities are preventable. This includes fetal alcohol syndrome caused by
the mother consuming alcohol during pregnancy. FAS can cause both physical and
cognitive disabilities.

✧ Introduction ✧
Every year, under the federal law known as
theIndividualswithDisabilitiesEducationAct
(IDEA),millionsofchildrenwithdisabilities
receivespecialservicesdesignedtomeettheir
uniqueneeds.Forinfantsandtoddlerswith
disabilitiesbirththroughtwoandtheirfamilies,
special services are provided through an early
intervention system. For school-aged children and youth
(aged 3 through 21), special education and related
services are provided through the school system. These
services can be very important in helping children and
youth with disabilities develop, learn, and succeed in
schoolandothersettings.
✧ Who is Eligible for Services? ✧
Under the IDEA, states are responsible for meeting
thespecialneedsofeligiblechildrenwithdisabilities.To
find out if a child is eligible for services, he or she must
first receive a full and individual initial evaluation. This
evaluation is free. Two purposes of the evaluation are:
• to see if the child has a disability, as defined by
IDEA, and
• to learn in more detail what his or her special
needs are.
Infants and Toddlers, Birth Through Two. Under the
IDEA, “infants and toddlers with disabilities“ are
defined as children “from birth through age two who
needearlyinterventionservicesbecausethey—
✧ areexperiencingdevelopmentaldelays,asmeasured
byappropriatediagnosticinstrumentsandproce-
dures, in one or more of the following areas:
• cognitivedevelopment.
• physicaldevelopment,includingvision
and hearing.
• communicationdevelopment.
• socialoremotionaldevelopment.
• adaptivedevelopment;or
✧✧✧✧✧ have a diagnosed physical or mental
condition that has a high probability of
resultingindevelopmentaldelay.
The term may also include, if a state
chooses, children from birth through age
two who are at risk of having substantial
developmentaldelaysifearlyintervention
services are not provided.” (34 Code of
Federal Regulations §303.16)
Children Aged 3 Through 9. It is important to know
that, under IDEA, states and local educational agencies
(LEAs) are allowed to use the term “developmental
delay” with children aged 3 through 9, rather than one
of the disability categories listed at the top of page 2.
This means that, if they choose, states and LEAs do not
have to say that a child has a specific disability. For
children aged 3 through 9, a state and LEA may choose
to include as an eligible “child with a disability” a child
whoisexperiencingdevelopmentaldelaysinoneor
more of the following areas:
• physicaldevelopment,
• cognitivedevelopment,
• communicationdevelopment,
• socialoremotionaldevelopment,or
• adaptivedevelopment;and
who,becauseofthedevelopmentaldelays,needsspecial
educationandrelatedservices.
“Developmentaldelays”aredefinedbythestateand
mustbemeasuredbyappropriatediagnosticinstru-
mentsandprocedures.
Children and Youth Aged 3 Through 21. The IDEA
lists 13 different disability categories under which 3-
through 21-year-olds may be eligible for services.
For a child to be eligible for services, the
disabilitymustaffectthechild’seduca-
tionalperformance.Thedisability
categories listed in IDEA are:
General Information About Disabilities:
Disabilities That Qualify Infants, Toddlers, Children,
and Youth for Services under the IDEA
National Dissemination Center
for Children with Disabilities
E-mail: nichcy@aed.org
Web: www.nichcy.org
P.O. Box 1492
Washington, DC
20013-1492
1.800.695.0285 (Voice/TTY)

• autism,
• deaf-blindness,
• emotional disturbance,
• hearing impairment (including
deafness),
• mental retardation,
• multiple disabilities,
• orthopedic impairment,
• other health impairment,
• specific learning disability,
• speech or language impairment,
• traumatic brain injury, or
• visual impairment (including blindness).
Under IDEA, a child may not be identified as a
“child with a disability” just because he or she speaks a
language other than English and does not speak or
understand English well. A child may not be identified
as having a disability just because he or she has not had
enough instruction in math or reading.
✧ How Does the IDEA Define
the 13 Disability Categories? ✧
The IDEA provides definitions of the 13 disability
categorieslistedabove.Thesefederaldefinitionsguide
how states define who is eligible for a free appropriate
public education under IDEA. The definitions of disabil-
ity terms are as follows:
1. Autism...
meansadevelopmentaldisabilitysignificantlyaffecting
verbal and nonverbal communication and social
interaction,generallyevidentbeforeagethree,that
adverselyaffectseducationalperformance.Characteris-
tics often associated with autism are engaging in repeti-
tiveactivitiesandstereotypedmovements,resistanceto
changes in daily routines or the environment, and
unusualresponsestosensoryexperiences.Theterm
autism does not apply if the child's educational perfor-
mance is adversely affected primarily because the child
has emotional disturbance, as defined in #4 below.
A child who shows the characteristics of autism
after age 3 could be diagnosed as having autism if
the criteria above are satisfied.
2. Deaf-Blindness...
meansconcomitant[simultaneous]hearingand
visualimpairments,thecombinationofwhich
causessuchseverecommunicationandother
developmentalandeducationalneedsthatthey
cannotbeaccommodatedinspecialeducation
programs solely for children with deafness or
childrenwithblindness.
3. Deafness...
means a hearing impairment so severe that a child is
impairedinprocessinglinguisticinformationthrough
hearing,withorwithoutamplification,thatadversely
affectsachild'seducationalperformance.
4. Emotional Disturbance...
means a condition exhibiting one or more of the follow-
ing characteristics over a long period of time and to a
marked degree that adversely affects a child's educa-
tionalperformance:
(a) An inability to learn that cannot be explained
by intellectual, sensory, or health factors.
(b) An inability to build or maintain satisfactory
interpersonalrelationshipswithpeersandteachers.
(c) Inappropriate types of behavior or feelings
undernormalcircumstances.
(d) A general pervasive mood of unhappiness or
depression.
(e) A tendency to develop physical symptoms or
fearsassociatedwithpersonalorschoolproblems.
Thetermincludesschizophrenia.Thetermdoesnot
apply to children who are socially maladjusted, unless it
isdeterminedthattheyhaveanemotionaldisturbance.
5. Hearing Impairment...
meansanimpairmentinhearing,whetherpermanentor
fluctuating,thatadverselyaffectsachild’seducational
performancebutisnotincludedunderthedefinitionof
“deafness.”
NICHCY: 1- 800-695-0285 General Information About Disabilities (GR3)2

6. Mental Retardation...
meanssignificantlysubaveragegeneralintel-
lectualfunctioning,existingconcurrently[at
thesametime]withdeficitsinadaptive
behaviorandmanifestedduringthedevelop-
mental period, that adversely affects a child’s
educationalperformance.
7. Multiple Disabilities...
meansconcomitant[simultaneous]impairments(such
asmentalretardation-blindness,mentalretardation-
orthopedicimpairment,etc.),thecombinationofwhich
causessuchsevereeducationalneedsthattheycannotbe
accommodated in a special education program solely
for one of the impairments. The term does not include
deaf-blindness.
8. Orthopedic Impairment...
meansasevereorthopedicimpairmentthatadversely
affectsachild’seducationalperformance.Theterm
includesimpairmentscausedbyacongenitalanomaly
(e.g. clubfoot, absence of some member, etc.), impair-
ments caused by disease (e.g., poliomyelitis, bone
tuberculosis,etc.),andimpairmentsfromothercauses
(e.g., cerebral palsy, amputations, and fractures or
burnsthatcausecontractures).
9. Other Health Impairment...
meanshavinglimitedstrength,vitality,oralertness,
includingaheightenedalertnesstoenvironmental
stimuli,thatresultsinlimitedalertnesswithrespectto
theeducationalenvironment,that—
(a) is due to chronic or acute health problems such
asasthma,attentiondeficitdisorderorattentiondeficit
hyperactivitydisorder,diabetes,epilepsy,aheart
condition,hemophilia,leadpoisoning,leukemia,
nephritis, rheumatic fever, and sickle cell anemia; and
(b) adversely affects a child’s educational perfor-
mance.
10. Specific Learning Disability...
means a disorder in one or more of the basic psycho-
logical processes involved in understanding or in using
language, spoken or written, that may manifest itself in
an imperfect ability to listen, think, speak, read, write,
spell, or to do mathematical calculations. The term
includessuchconditionsasperceptualdisabilities,brain
injury, minimal brain dysfunction, dyslexia, and
developmentalaphasia.Thetermdoesnotinclude
learning problems that are primarily the
result of visual, hearing, or motor disabili-
ties;ofmentalretardation;ofemotional
disturbance;orofenvironmental,cultural,
oreconomicdisadvantage.
11. Speech or Language Impairment...
meansacommunicationdisordersuchasstuttering,
impaired articulation, a language impairment, or a
voice impairment that adversely affects a child’s educa-
tionalperformance.
12. Traumatic Brain Injury...
means an acquired injury to the brain caused by an
external physical force, resulting in total or partial
functionaldisabilityorpsychosocialimpairment,or
both, that adversely affects a child's educational perfor-
mance. The term applies to open or closed head injuries
resulting in impairments in one or more areas, such as
cognition;language;memory;attention;reasoning;
abstractthinking;judgment;problem-solving;sensory,
perceptual,andmotorabilities;psychosocialbehavior;
physicalfunctions;informationprocessing;andspeech.
The term does not include brain injuries that are con-
genital or degenerative, or brain injuries induced by
birthtrauma.
13. Visual Impairment Including Blindness...
means an impairment in vision that, even with correc-
tion,adverselyaffectsachild’seducationalperformance.
The term includes both partial sight and blindness.
✧ Finding Out More About Disabilities ✧
IDEA’sdefinitionsofdisabilitytermshelpstates,
schools, service providers, and parents decide if a child
is eligible for early intervention or special education and
relatedservices.Beyondthesedefinitions,thereisagreat
dealofinformationavailableaboutspecificdisabilities,
including disabilities not listed in IDEA. NICHCY
would be pleased to help you find that information,
beginningwith:
• our disability fact sheets and
other publications on the
disabilities listed in IDEA;
• contact information for
many organizations
that focus their work on a
particular disability.
NICHCY: 1- 800-695-0285General Information About Disabilities (GR3) 3

✧ More About Services ✧
Special services are available to eligible children
with disabilities and can do much to help children
develop and learn. For infants and toddlers aged birth
through two, services are provided through an early
intervention system. This system may be run by the
HealthDepartmentinthestate,oranotherdepartment
such as Education. If you are a parent and you would
like to find out more about early intervention in your
state, including how to have your child evaluated at
no cost to you, try any of these suggestions:
• ask your child's pediatrician to put you in
touchwiththeearlyinterventionsystemin
your community or region;
• contact the Pediatrics branch in a local hospital
and ask where you should call to find out
about early intervention services in your area;
• call NICHCY and ask for the contact informa-
tion for early intervention in your state. The
state office will refer you to the contact person
or agency in your area.
For children and youth ages 3 through 21, special
education and related services are provided through the
public school system. Probably the best way to find
out about these services is to call your local public
school. The school should be able to tell you about
special education policies in your area or refer you to a
district or county office for this information. If you are
a parent who thinks your child may need special
education and related services, be sure to ask how to
have your child evaluated under IDEA for eligibility.
Often there are materials available to tell parents and
others more about local and state policies for special
educationandrelatedservices.
There is a lot to know about early intervention,
about special education and related services, and
abouttherightsofchildrenwithdisabilitiesunderthe
IDEA, our nation's special education law. NICHCY
offers many publications, all of which are available
on our Web site or by contacting us directly. We
can also tell you about materials available from
other groups.
GR3, June 2002
✧ Other Sources of Information
for Parents ✧
There are many sources of information about
servicesforchildrenwithdisabilities.Withinyour
community, you may wish to contact:
• the Child Find Coordinator for your district or
county (IDEA requires that states conduct
Child Find activities to identify, locate, and
evaluateinfants,toddlers,children,andyouth
with disabilities aged birth through 21);
• the principal of your child's school; or
• the Special Education Director of your child's
school district or local school.
Any of these individuals should be able to answer
specific questions about how to obtain special educa-
tion and related services, or early intervention services
for your child.
In addition, every state has a Parent Training and
Information (PTI) center, which is an excellent source
of information. The PTI can:
• help you learn about early intervention and
specialeducationservices;
• tell you about what the IDEA requires;
• connect you with disability groups and parent
groups in the community or state; and
• much,muchmore!
To find out how to contact your state’s PTI, look at
the NICHCY State Resource Sheet for your state (avail-
able on our Web site or by contacting us directly).
You'll find the PTI listed there, as well as many other
informationresources,suchascommunityparent
resourcecenters,disability-specificorganizations,and
stateagenciesservingchildrenwithdisabilities.
This publication is copyright free. Readers are encouraged to copy and share it, but please credit
NICHCY. Publication of this document is made possible through a Cooperative Agreement be-
tween the Academy for Educational Development and the Office of Special Education Programs of
the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies
of the Department of Education, nor does mention of trade names, commercial products,
or organizations imply endorsement by the U.S. Government.

NICHCYDisabilityFactSheet—No.1
DisabiDisabiDisabiDisabiDisabilitlitlitlitlity Fy Fy Fy Fy Fact Sact Sact Sact Sact Sheet, Nheet, Nheet, Nheet, Nheet, No. 1o. 1o. 1o. 1o. 1
AAAAApripripripripril 2007l 2007l 2007l 2007l 2007
✧ RRRRRyan’yan’yan’yan’yan’s Ss Ss Ss Ss Storytorytorytorytory ✧
Ryan is a healthy, active two-year-
old, but his parents are concerned
because he doesn’t seem to be doing the
same things that his older sister did at
this age. He’s not really talking, yet;
although sometimes, he repeats, over
and over, words that he hears others
say. He doesn’t use words to communi-
cate, though. It seems he just enjoys the
sounds of them. Ryan spends a lot of
time playing by himself. He has a few
favorite toys, mostly cars, or anything
with wheels on it! And sometimes, he
spins himself around as fast as he does
the wheels on his cars. Ryan’s parents
are really concerned, as he’s started
throwing a tantrum whenever his
routine has the smallest change. More
and more, his parents feel stressed, not
knowing what might trigger Ryan’s
next upset.
Often, it seems Ryan doesn’t notice
or care if his family or anyone else is
around. His parents just don’t know
how to reach their little boy, who seems
so rigid and far too set in his ways for
his tender young age. After talking with
their family doctor, Ryan’s parents call
the Early Intervention office in their
community and make an appointment
to have Ryan evaluated.
When the time comes, Ryan is seen
by several professionals who play with
him, watch him, and ask his parents a
lot of questions. When they’re all done,
Ryan is diagnosed with a form of
autism. As painful as this is for his
parents to learn, the early intervention
staff try to encourage them. By getting
an early diagnosis and beginning
treatment, Ryan has the best chance to
grow and develop. Of course, there’s a
long road ahead, but his parents take
comfort in knowing that they aren’t
alone and they’re getting Ryan the help
he needs.
is the
for Children with Disabilities.
NICHCY
P.O. Box 1492
Washington, DC 20013
1.800.695.0285 (voice / TTY)
202.884.8200 (voice / TTY)
nichcy@aed.org
www.nichcy.org
AAAAAutututututism / PDDism / PDDism / PDDism / PDDism / PDDAAAAAutututututism / PDDism / PDDism / PDDism / PDDism / PDD

✧ What is AWhat is AWhat is AWhat is AWhat is Autututututism / PDD?ism / PDD?ism / PDD?ism / PDD?ism / PDD? ✧
Autism/Pervasive Developmental Disorder (PDD) is a neuro-
logical disorder that affects a child’s ability to communicate,
understand language, play, and relate to others. PDD repre-
sents a distinct category of developmental disabilities that
share many of the same characteristics.
The different diagnostic terms that fall within the
broad meaning of PDD, include:
• AutisticDisorder,
• Asperger’sDisorder,
• Rett’sDisorder,
• ChildhoodDisintegrativeDisorder,and
• PervasiveDevelopmentalDisorderNot
OtherwiseSpecified(PDD-NOS).
While there are subtle differences and degrees of severity among
these conditions, treatment and educational needs can be very
similar for all of them.
In the diagnostic manual used to classify mental disorders, the
DSM-IV-TR (American Psychiatric Association, 2000), “Autistic
Disorder” is listed under the heading of “Pervasive Developmental
Disorders.” A diagnosis of autistic disorder is made when an indi-
vidual displays 6 or more of 12 symptoms across three major areas:
(a) social interaction, (b) communication, and (c) behavior. When
children display similar behaviors but do not meet the specific
criteria for autistic disorder (or the other disorders listed above),
they may receive a diagnosis of Pervasive Developmental Disorder
Not Otherwise Specified, or PDD-NOS.
Autism is one of the disabilities specifically de-
fined in the Individuals with Disabilities Education
Act (IDEA), the federal legislation under which
infants, toddlers, children, and youth with
disabilitiesreceiveearlyintervention,special
education and related services. IDEA defines
the disorder as “a developmental disability
significantly affecting verbal and nonverbal
communication and social interaction, generally
evident before age 3, that adversely affects a child’s
educational performance. Other characteristics often
associated with autism are engagement in repetitive
NICHCY: 1.800.695.0285 2 Fact Sheet on Autism (FS1)
DDDDDon’t Bon’t Bon’t Bon’t Bon’t Be Se Se Se Se Shy!hy!hy!hy!hy!
All of our publications
and resource lists are
online—help yourself!
Visit us at:
www.nichcy.org
If you’d like personalized
assistance, email or call
us:
nichcy@aed.org
1.800.695.0285
(V/TTY)

activities and stereotyped movements, resistance to environmental
change or change in daily routines, and unusual responses to
sensory experiences.” See 34 Code of Federal Regulations
§300.8(c)(1).
✧ HHHHHow Common is Aow Common is Aow Common is Aow Common is Aow Common is Autututututism / PDD?ism / PDD?ism / PDD?ism / PDD?ism / PDD? ✧
Information from the National Institute of Mental Health and
the Center for Disease Control and Prevention (CDC) indicates that
between 2 to 6 per 1,000 children (from 1 in 500 to 1 in 150)
have some form of autism/PDD. These disorders are four times
more common in boys than in girls, although Rett’s Disorder has
only been reported and diagnosed in girls.
The causes of autism or PDD are unknown. Currently, research-
ers are investigating areas such as brain development, structure,
genetic factors and biochemical imbalance in the brain as possible
causes. These disorders are not caused by psychological factors.
✧ WhatWhatWhatWhatWhat are tare tare tare tare thhhhhe Se Se Se Se Signs of Aigns of Aigns of Aigns of Aigns of Autututututism / PDD?ism / PDD?ism / PDD?ism / PDD?ism / PDD? ✧
Some or all of the following characteristics may be observed in
mild to severe forms:
• Communication problems (e.g., using and understanding
language);
• Difficulty relating to people, objects, and events;
• Unusual play with toys and other objects;
• Difficulty with changes in routine or familiar surroundings; and
• Repetitive body movements or behavior patterns.
Children with autism/PDD vary widely in abilities,
intelligence, and behaviors. Some children do not speak;
others have language that often includes repeated
phrases or conversations. Children with more advanced
language skills tend to use a small range of topics and
have difficulty with abstract concepts. Repetitive play
skills, a limited range of interests, and impaired social
skills are generally evident as well. Unusual responses to
sensory information—for example, loud noises, lights,
certain textures of food or fabrics—are also common.
OtOtOtOtOther Hher Hher Hher Hher Helpfelpfelpfelpfelpfululululul
Things to KThings to KThings to KThings to KThings to Knownownownownow
These NICHCY
publications talk about
topics important to
parents of a child with a
disability.
Parenting a Child
with Special Needs
Your Child’s
Evaluation
Parent to Parent Support
Questions Often Asked
by Parents About Special
Education Services
Developing Your Child’s
IEP
All are available in
English and in Spanish—
on our Web site or by
contacting us.
Early diagnosis
and appropriate
educational programs
are very important
to children with
autism/PDD.

✧ What Research is Being Done?What Research is Being Done?What Research is Being Done?What Research is Being Done?What Research is Being Done? ✧
Thanks to federal legislation—the Children’s Health Act of 2000
and the Combating Autism Act of 2006—nearly $1 billion over the next
five years (2007-2012) has been authorized to combat autism through
research, screening, early detection, and early intervention. The Na-
tional Institutes of Health and the CDC are the lead entities conducting
and coordinating multiple research activities. On the education front,
the PDA Center at the University of Washington has several sites
around the country that provide training and support to schools and
families for students with autism spectrum disorders. Research on
instructional interventions for children with a broad range of needs is
an ongoing national endeavor. Check NICHCY’s Research to Practice
database and OSEP’s discretionary projects directories on our web site to
learn more. Additional information can also be found on the web sites
included in the list of Organizations at the end of this publication.
✧ What about SWhat about SWhat about SWhat about SWhat about Schoolchoolchoolchoolchool????? ✧
Early diagnosis and intervention are very important for children
with autism/PDD. Under the Individuals with Disabilities Education Act
(IDEA), children with autism/PDD may be eligible for early intervention
services (birth to 3) and an educational program appropriate to their
individual needs. In addition to academic instruction, special
education programs for students with autism/PDD (ages 3 to 22)
focus on improving communication, social, academic, behav-
ioral, and daily living skills. Behavior and communication
problems that interfere with learning often require the
assistance of a professional who is particularly knowledge-
able in the autism field to develop and help implement a
plan which can be carried out at home and school.
The classroom environment should be structured so that the
program is consistent and predictable. Students with autism/
PDD learn better and are less confused when information is pre-
sented visually as well as verbally. Interaction with nondisabled peers is
also important, for these students provide models of appropriate lan-
guage, social, and behavioral skills. Consistency and continuity are very
important for children with autism/PDD, and parents should always be
involved in the development of their child’s program, so that learning
activities, experiences, and approaches will be most effective and can be
carried over into the home and community.
With educational programs designed to meet a student’s individual
needs and specialized adult support services in employment and living
arrangements, many children and adults with autism/PDD grow to live,
work, and participate fully in their communities.
WWWWWananananant Mt Mt Mt Mt More Iore Iore Iore Iore Info?nfo?nfo?nfo?nfo?
NICHCY’s State
Resources Sheets list
organizations in each
state related to autism,
early intervention,
special education,
parent centers, and
other disability-related
issues and concerns.
Help yourself!
Our “A to Z Topics”
include connections to
a treasure trove of links
to the latest research,
publications, confer-
ences and more!
(Just two of the many
resources available to
you online and at no
cost from NICHCY.)

✧ TTTTTips for Pips for Pips for Pips for Pips for Parenarenarenarenarentststststs ✧
❑ Learn about autism/PDD. The
more you know, the more you
can help yourself and your
child. Your State’s PTI can be
especially helpful. You’ll find
resources and organizations at
the end of this publication
and in NICHCY’s online State
Resources Sheet.
❑ Be mindful to interact with and teach
your child in ways that are most likely to
get a positive response. Learn what is likely
to trigger a melt-down for your child, so
you can try to minimize them. Remember,
the earliest years are the toughest, but it
does get better!
❑ Learn from professionals and other par-
ents how to meet your child’s special
needs, but remember your son or daughter
is first and foremost a child; life does not
need to become a neverending round of
therapies.
❑ If you weren’t born loving highly struc-
tured, consistent schedules and routines,
ask for help from other parents and
professionals on how to make it second
nature for you. Behavior, communication,
and social skills can all be areas of con-
cern for a child with autism and experi-
ence tells us that maintaining a solid,
loving, and structured approach in caring
for your child, can help greatly.
❑ Learn about assistive technology (AT) that
can help your child. This may include a
simple picture communication board to
help your child express needs and desires,
or may be as sophisticated as an augmen-
tative communication device.
❑ Work with professionals in early interven-
tion or in your child’s school to develop
an IFSP or an IEP that reflects your child’s
needs and abilities. Be sure to include
related services, supplementary aids and
services, AT, and a positive behavioral
support plan, if needed.
❑ Be patient and stay optimistic. Your child,
like every child, has a whole lifetime to
learn and grow.
✧ TTTTTips for Tips for Tips for Tips for Tips for Teacherseacherseacherseacherseachers ✧
❑ Learn more about autism/PDD. Check out
the research on effective instructional
interventions and behavior on NICHCY’s
web site. The resources and organizations
listed in this publication can also help.
❑ Make sure directions are given step-by-
step, verbally, visually, and by providing
physical supports or prompts, as needed
by the student. Students with autism
spectrum disorders often have trouble
interpreting facial expressions, body
language, and tone of voice. Be as con-
crete and explicit as possible in your
instructions and feedback to the student.
❑ Find out what the student’s strengths and
interests are and emphasize them. Tap
into those avenues and create opportuni-
ties for success. Give positive feedback and
lots of opportunities for practice.
❑ Build opportunities for the student to have
social/collaborative interactions through-
out the regular school day. Provide sup-
port, structure, and lots of feedback.
❑ If behavior is a significant issue for the
student, seek help from expert profession-
als (including parents) to understand the
meanings of the behaviors and to develop
a unified, positive approach to resolving
them.
❑ Have consistent routines and schedules.
When you know a change in routine will
occur (e.g., a field trip or assembly) prepare
the student by telling him or her what is
going to be different and what to expect or
do. Reward students for each small suc-
cess.
❑ Work together with the student’s parents
and other school personnel to create and
implement an educational
plan tailored to meet
the student’s needs.
Regularly share
information about
how the student is
doing at school and
at home.

Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Academy for
Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The
contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does
mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.
This publication is copyright free. Readers are encouraged to copy and share it, but please credit NICHCY.
✧ ResourcesResourcesResourcesResourcesResources ✧
Baldi, H., & Detmers, D. (2000). Embracing play: Teaching your child with
autism [Video]. Bethesda, MD: Woodbine House. (Phone: 800.843.7323;
Web: www.woodbinehouse.com)
Beytien, A. (2004). Family to family: A guide to living life when a child is
diagnosed with an autism spectrum disorder [Video]. Higganum, CT: Starfish
Specialty Press. (Phone: 877.782.7347; Web: www.starfishpress.com)
Bondy, A., & Frost, L. (2002). A picture’s worth: PECS and other visual
communication strategies in autism. Bethesda, MD: Woodbine House.
(See contact information above.)
Bruey, C.T. (2003). Demystifying autism spectrum disorders: A guide to
diagnosis for parents and professionals. Bethesda, MD: Woodbine House.
Cafiero, J.M. (2005). Meaningful exchanges for people with autism: An
introduction to augmentative & alternative communication. Bethesda, MD:
Woodbine House. (See contact information above.)
DuCharme, R., & Gullotta, T.P. (Eds.) (2004). Asperger syndrome: A guide
for professionals and families. New York: Springer Publishers.
(Phone: 800.777.4643; Web: www.springeronline.com)
Glasberg, B. (2005). Functional behavior assessment for people with autism:
Making sense of seemingly senseless behavior. Bethesda, MD: Woodbine
House. (See contact information above.)
Journal of Autism and Developmental Disorders. New York: Springer
Publishers. (See contact information above.)
Mesibov, G.B., Shea, V., & Schopler, E. (2004). The TEACCH approach to
autism spectrum disorders. New York: Springer Publishers. (See contact
information above.)
O’Brien, M., & Daggett, J.A. (2006). Beyond the autism diagnosis:
A professional’s guide to helping families. Baltimore, MD: Brookes Publish-
ing (Phone: 800.638.3775; Web: www.brookespublishing.com)
Richman, S. (2000). Raising a child with autism: A guide to applied
behavior analysis for parents. London: Jessica Kingsley Publishers.
(Web: www.jkp.com/)
Tsai, L.Y. (1998). Pervasive developmental disorders. Washington, DC:
NICHCY. (Available online at: www.nichcy.org/pubs/factshe/fs20txt.htm)
Volkmar, F.R., & Wiesner, L.A. (2003) Healthcare for children on the
autism spectrum: A guide to medical, nutritional, and behavioral issues.
Bethesda, MD: Woodbine House. (See contact information above.)
Wiseman, N.D. (2006). Could it be autism? New York: Broadway Books.
(Web: www.broadwaybooks.com)
For more information, books, and videos on autism spectrum disor-
ders, the Autism Society of North Carolina Bookstore has over 400 titles in
their collection. (Phone: 919.743.0204; Web: www.autismbookstore.com)
✧ OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions ✧
(★ indicates member of OSEP’s Technical
Assistance and Dissemination Network)
Autism Information Center at CDC
Phone: 800.311.3435
Web: www.cdc.gov/ncbddd/autism/index.htm
Autism Society of America
Phone:800.328.8476
Web: www.autism-society.org
Autism Treatment Network
Web: www.autismtreatmentnetwork.org
★ Center on Positive Behavioral Interventions
and Supports (PBIS)
Web: www.pbis.org
★ Center for Implementing Technology
in Education (CITEd)
Web: www.citededucation.org
Cure Autism Now
Phone:888.828.8476
Web: www.cureautismnow.org
★ Family Center on Technology and Disability
Web: www.fctd.info/
Indiana Resource Center for Autism
Web: www.iidc.indiana.edu/irca
Interactive Autism Network
Web: www.ianproject.org/
MAAP Services for Autism & Asperger Syndrome
Web: www.asperger.org
National Alliance for Autism Research
Phone:888.777.6227
Web: www.naar.org/
NIH Autism Research Network
Web: www.autismresearchnetwork.org/AN/
★ NIMAS Development and Technical
Assistance Centers
Web: http://nimas.cast.org
O.A.S.I.S. Online Asperger Syndrome
Information and Support
Web: www.aspergersyndrome.org/
★ Professional Development in Autism Center
Web: depts.washington.edu/pdacent/
Yale Developmental Disabilities Clinic
Web: www.autism.fm
FS1, April 2007

JJJJJanuary 2004anuary 2004anuary 2004anuary 2004anuary 2004
4 SSSSSararararara’a’a’a’a’s Ss Ss Ss Ss Storytorytorytorytory 4
When Sara was in the first grade, her
teacher started teaching the students
how to read. Sara’s parents were really
surprised when Sara had a lot of trouble.
She was bright and eager, so they
thought that reading would come easily
to her. It didn’t. She couldn’t match the
letters to their sounds or combine the
letters to create words.
Sara’s problems continued into
second grade. She still wasn’t reading,
and she was having trouble with writing,
too. The school asked Sara’s mom for
permission to evaluate Sara to find out
what was causing her problems. Sara’s
mom gave permission for the evalua-
tion.
The school conducted an evaluation
and learned that Sara has a learning
disability. She started getting special
help in school right away.
Sara’s still getting that special help.
She works with a reading specialist and a
resource room teacher every day. She’s in
the fourth grade now, and she’s made
real progress! She is working hard to
bring her reading and writing up to
grade level. With help from the school,
she’ll keep learning and doing well.
Learning disability is a general term
that describes specific kinds of learning
problems. A learning disability can cause
a person to have trouble learning and
using certain skills. The skills most often
affected are: reading, writing, listening,
speaking, reasoning, and doing math.
Learning disabilities (LD) vary from
person to person. One person with LD
may not have the same kind of learning
problems as another person with LD.
Sara, in our example above, has trouble
with reading and writing. Another
person with LD may have problems with
understanding math. Still another per-
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
LLLLLearning Disabiearning Disabiearning Disabiearning Disabiearning DisabilitlitlitlitlitiesiesiesiesiesLLLLLearning Disabiearning Disabiearning Disabiearning Disabiearning Disabilitlitlitlitlitiesiesiesiesies
4 What are LWhat are LWhat are LWhat are LWhat are Learning Disabiearning Disabiearning Disabiearning Disabiearning Disabilitlitlitlitlities?ies?ies?ies?ies? 4

NICHCY: 1.800.695.0285 2 Fact Sheet on Learning Disabilities (FS7)
son may have trouble in each of these areas, as well as
with understanding what people are saying.
Researchers think that learning disabilities are
caused by differences in how a person’s brain works
and how it processes information. Children with
learning disabilities are not “dumb” or “lazy.” In fact,
they usually have average or above average intelligence.
Their brains just process information differently.
The definition of “learning disability” in the box
on page 4 comes from the Individuals with Disabilities
Education Act (IDEA). The IDEA is the federal law that
guides how schools provide special education and
related services to children with disabilities. The
special help that Sara is receiving is an example of
special education.
There is no “cure” for learning disabilities. They
are life-long. However, children with LD can be high
achievers and can be taught ways to get around the
learning disability. With the right help, children with
LD can and do learn successfully.
Very common! As many as 1 out of every 5 people
in the United States has a learning disability. Almost 3
million children (ages 6 through 21) have some form
of a learning disability and receive special education in
school. In fact, over half of all children who receive
special education have a learning disability (Twenty-
fourth Annual Report to Congress, U.S. Department of
Education, 2002).
There is no one sign that shows a person has a
learning disability. Experts look for a noticeable
difference between how well a child does in school
and how well he or she could do, given his or her
intelligence or ability. There are also certain clues that
may mean a child has a learning disability. We’ve listed
a few below. Most relate to elementary school tasks,
because learning disabilities tend to be identified in
elementary school. A child probably won’t show all of
these signs, or even most of them. However, if a child
shows a number of these problems, then parents and
the teacher should consider the possibility that the
child has a learning disability.
When a child has a learning disability, he or she:
• may have trouble learning the alphabet, rhyming
words, or connecting letters to their sounds;
• may make many mistakes when reading aloud, and
repeat and pause often;
• may not understand what he or she reads;
• may have real trouble with spelling;
• may have very messy handwriting or hold a pencil
awkwardly;
• may struggle to express ideas in writing;
• may learn language late and have a limited vocabu-
lary;
• may have trouble remembering the sounds that
letters make or hearing slight differences between
words;
• may have trouble understanding jokes, comic
strips, and sarcasm;
• may have trouble following directions;
• may mispronounce words or use a wrong word
that sounds similar;
• may have trouble organizing what he or she wants
to say or not be able to think of the word he or she
needs for writing or conversation;
• may not follow the social rules of conversation,
such as taking turns, and may stand too close to the
listener;
• may confuse math symbols and misread numbers;
• may not be able to retell a story in order (what
happened first, second, third); or
• may not know where to begin a task or how to go
on from there.
If a child has unexpected problems learning to
read, write, listen, speak, or do math, then teachers and
parents may want to investigate more. The same is true
if the child is struggling to do If a child has unexpected
problems learning to read, write, listen, speak, or do
math, then teachers and parents may want to investi-
gate more. The same is true if the child is struggling to
do any one of these skills. The child may need to be
evaluated to see if he or she has a learning disability.
4 What About SWhat About SWhat About SWhat About SWhat About Schoolchoolchoolchoolchool????? 4
Learning disabilities tend to be diagnosed when
children reach school age. This is because school
focuses on the very things that may be difficult for the
child—reading, writing, math, listening, speaking,
reasoning. Teachers and parents notice that the child is
not learning as expected. The school may ask to
evaluate the child to see what is causing the problem.
Parents can also ask for their child to be evaluated.
With hard work and the proper help, children
with LD can learn more easily and successfully. For
4 How Common are Learning Disabilities?How Common are Learning Disabilities?How Common are Learning Disabilities?How Common are Learning Disabilities?How Common are Learning Disabilities? 4
4 What AWhat AWhat AWhat AWhat Are tre tre tre tre the She She She She Signs of a Ligns of a Ligns of a Ligns of a Ligns of a Learning Disabiearning Disabiearning Disabiearning Disabiearning Disabilitlitlitlitlity?y?y?y?y? 4

Fact Sheet on Learning Disabilities (FS7) 3 NICHCY: 1.800.695.0285
4 TTTTTips for Pips for Pips for Pips for Pips for Parenarenarenarenarentststststs 4
u Learn about LD. The more you
know,the more you can help
yourself and your child. See the
list of resources and organiza-
tions at the end of this publica-
tion.
u Praise your child when he or she does well.
Children with LD are often very good at a
variety of things. Find out what your child
really enjoys doing, such as dancing, playing
soccer, or working with computers. Give your
child plenty of opportunities to pursue his or
her strengths and talents.
u Find out the ways your child learns best. Does
he or she learn by hands-on practice, looking,
or listening? Help your child learn through his
or her areas of strength.
u Let your child help with household chores.
These can build self-confidence and concrete
skills. Keep instructions simple, break down
tasks into smaller steps, and reward your child’s
efforts with praise.
u Make homework a priority. Read more about
how to help your child be a success at home-
work. (See resource list on page 4.)
u Pay attention to your child’s mental health
(and your own!). Be open to counseling, which
can help your child deal with frustration, feel
better about himself or herself, and learn more
about social skills.
u Talk to other parents whose children have
learning disabilities. Parents can share practical
advice and emotional support. Call NICHCY
(1.800.695.0285) and ask how to find parent
groups near you. Also let us put you in touch
with the parent training and information (PTI)
center in your state.
u Meet with school personnel and help develop
an educational plan to address your child’s
needs. Plan what accommodations your child
needs, and don’t forget to talk about assistive
technology!
u Establish a positive working relationship with
your child’s teacher. Through regular communi-
cation, exchange information about your
child’s progress at home and at school.
4 TTTTTips for Tips for Tips for Tips for Tips for Teacherseacherseacherseacherseachers 4
u Learn as much as you can about the different
types of LD. The resources and organizations on
page 4 can help you identify specific techniques
and strategies to support the student education-
ally.
u Seize the opportunity to make an enormous
difference in this student’s life! Find out and
emphasize what the student’s strengths and
interests are. Give the student positive feedback
and lots of opportunities for practice.
u Review the student’s evaluation records to iden-
tify where specifically the student has trouble. Talk
to specialists in your school (e.g., special educa-
tion teacher) about methods for teaching this
student. Provide instruction and accommoda-
tions to address the student’s special needs.
Examples include:
breaking tasks into smaller steps, and giving
directions verbally and in writing;
giving the student more time to finish school-
work or take tests;
letting the student with reading problems use
textbooks-on-tape (available through Record-
ing for the Blind and Dyslexic, listed on page
4);
letting the student with listening difficulties
borrow notes from a classmate or use a tape
recorder; and
letting the student with writing difficulties use
a computer with specialized software that spell
checks, grammar checks, or recognizes speech.
u Learn about the different testing modifications
that can really help a student with LD show what
he or she has learned.
u Teach organizational skills, study skills, and
learning strategies. These help all students but are
particularly helpful to those with LD.
u Work with the student’s
parents to create an educa-
tional plan tailored to meet
the student’s needs.
u Establish a positive working
relationship with the
student’s parents. Through regular communica-
tion, exchange information about the student’s
progress at school.

school-aged children (including preschoolers), special
education and related services are important sources of
help. School staff work with the child’s parents to
develop an Individualized Education Program, or IEP.
This document describes the child’s unique needs. It also
describes the special education services that will be
provided to meet those needs. These services are pro-
vided at no cost to the child or family.
Supports or changes in the classroom (sometimes
called accommodations) help most students with LD.
Some common accommodations are listed in the “Tips
for Teachers” box on page 3.
Assistive technology can also help many students work
around their learning disabilities. Assistive technology
can range from “low-tech” equipment such as tape
recorders to “high-tech” tools such as reading machines
(which read books aloud) and voice recognition systems
(which allow the student to “write” by talking to the
computer).
It’s important to remember that a child may need
help at home as well as in school. The resources listed
below will help families and teachers learn more about
the many ways to help children with learning disabilities.
4 ResourcesResourcesResourcesResourcesResources 4
Cronin, E.M. (1997). Helping your dyslexic child: A
step-by-step program for helping your child improve reading,
writing, spelling, comprehension, and self-esteem. Roseville,
CA: Prima. (Phone: 800.726.0600. Web:
www.primapublishing.com/index.pperl)
Currie, P.S., Wadlington, E.M. (2000). The source for
learning disabilities. East Moline, IL: LinguiSystems.
(Phone: 800.776.4332. Web: www.linguisystems.com)
Hall, S., Moats, L.C. (1998). Straight talk about
reading: How parents can make a difference during the early
years. New York: McGraw Hill/Contemporary. (Phone:
877.833.5524. Web: http://books.mcgraw-hill.com)
Harwell, J.M. (2002). Complete learning disabilities
handbook: Ready-to-use strategies and activities for teaching
students with learning disabilities (2nd
ed.). West Nyack, NJ:
John Wiley Sons. (Phone: 877.762.2974. Web:
www.josseybass.com)
Lerner, J.W. (2003). Learning disabilities: Theories,
diagnosis, and teaching strategies (9th
ed.). Boston:
Houghton Mifflin. (Phone: 877.859.7241. Web: http://
college.hmco.com/students/index.html)
Mercer, C.D., Mercer, A.R. (2001). Teaching students
with learning problems (6th
ed.). Upper Saddle River, NJ:
Prentice Hall. (Phone: 800.282.0693.
Web: vig.prenhall.com)
Silver, L. (1998). The misunderstood child: Understand-
ing and coping with your child's learning disabilities (3rd
ed.).
New York: Three Rivers Press. (To find a local or online
bookseller go to: www.randomhouse.com/ reader_resources/
ordering. html)
Smith, C., Strick, L.W. (1999). Learning disabilities
from A to Z. New York: Simon Schuster. (To find a local
or online bookseller go to: www.simonsays.com)
Smith, S. (1995). No easy answers (Rev. ed.). New York:
Bantam. (To find a local or online bookseller go to:
www.randomhouse.com/reader_resources/ordering.html)
4 OrganizationsOrganizationsOrganizationsOrganizationsOrganizations 4
Division for Learning Disabilities (DLD), The Council
for Exceptional Children (CEC), 1110 North Glebe Road,
Suite 300, Arlington, VA 22201-5704. Phone: 703.620.3660.
E-mail: cec@cec.sped.org;
Web: www.dldcec.org
International Dyslexia Association, Chester Building,
Suite 382, 8600 LaSalle Road, Baltimore, MD 21286-2044.
Phone: 410.296.0232; 800.222.3123.
E-mail: info@interdys.org; Web: www.interdys.org
LDOnline - Website Only: www.ldonline.org
Learning Disabilities Association of America (LDA),
4156 Library Road, Pittsburgh, PA 15234-1349.
Phone: 412.341.1515. E-mail: info@ldaamerica.org;
Web: www.ldaamerica.org
National Center for Learning Disabilities, 381 Park
Avenue South, Suite 1401, New York, NY 10016.
Phone: 212.545.7510; 888.575.7373. Web: www.ld.org
Recording for the Blind and Dyslexic, 20 Roszel Road,
Princeton, NJ 08540. Phone: 609.452.0606; 866.732.3585.
E-mail: custserv@rfbd.org Web: www.rfbd.org
Schwab Learning - Website only: www.schwablearning.org
This publication is copyright free. Readers are encouraged to copy
and share it, but please credit the National Dissemination Center
for Children with Disabilities (NICHCY).
FS7, January 2004
Our nation’s special education law, the Individuals with
Disabilities Education Act, defines a specific learning disabil-
ity as . . .
“. . . a disorder in one or more of the basic psychological
processes involved in understanding or in using language,
spoken or written, that may manifest itself in an imperfect
ability to listen, think, speak, read, write, spell, or do
mathematical calculations, including conditions such as
perceptual disabilities, brain injury, minimal brain dys-
function, dyslexia, and developmental aphasia.”
However, learning disabilities do not include, “…learning
problems that are primarily the result of visual, hearing, or
motor disabilities, of mental retardation, of emotional
disturbance, or of environmental, cultural, or economic
disadvantage.” 34 Code of Federal Regulations §300.7(c)(10)

The National Dissemination Center for Children with Disabilities
Intellectual Disability (formerly Mental Retardation)
Matthew's Story
Matt is 15 years old. Because Matt has an intellectual disability, he has been receiving special education
services since elementary school. These services have helped him tremendously, because they are
designed to fit his special learning needs. Last year he started high school. He, his family, and the school
took a good hard look at what he wants to do when secondary school is over. Does he want more
education? A job? Does he have the skills he needs to live on his own?
Answering these questions has helped Matt and the school plan for the future. He's always been interested
in the outdoors, in plants, and especially in trees. He knows all the tree names and can recognize them by
their leaves and bark. So this year he's learning about jobs like forestry, landscaping, and grounds
maintenance. Next year he hopes to get a part-time job. He's learning to use public transportation, so he'll
be able to get to and from the job. Having an intellectual disability makes it harder for Matt to learn new
things. He needs things to be very concrete. But he's determined. He wants to work outside, maybe in the
park service or in a greenhouse, and he's getting ready!
What is Intellectual Disability?
Intellectual disability is a term used when a person has certain limitations in mental functioning and in
skills such as communicating, taking care of him or herself, and social skills. These limitations will cause a
child to learn and develop more slowly than a typical child. Children with intellectual disability may take
longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. They are
likely to have trouble learning in school. They will learn, but it will take them longer. There may be some
things they cannot learn.
What Causes Intellectual Disability?
Doctors have found many causes of intellectual disability. The most common are:
Genetic conditions. Sometimes intellectual disability is caused by abnormal genes inherited from
parents, errors when genes combine, or other reasons. Examples of genetic conditions are Down
syndrome, fragile X syndrome, and phenylketonuria (PKU).
Problems during pregnancy. Intellectual disability can result when the baby does not develop
inside the mother properly. For example, there may be a problem with the way the baby's cells
divide as it grows. A woman who drinks alcohol or gets an infection like rubella during pregnancy
may also have a baby with intellectual disability.
Problems at birth. If a baby has problems during labor and birth, such as not getting enough
oxygen, he or she may have intellectual disability.
Health problems. Diseases like whooping cough, the measles, or meningitis can cause an
intellectual disability. Intellectual disabilities can also be caused by extreme malnutrition (not
eating right), not getting enough medical care, or by being exposed to poisons like lead or
mercury.

Intellectual disability is not a disease. You can't catch it from anyone. Mental retardation or intellectual
disability is also not a type of mental illness, like depression. There is no cure for intellectual disability.
However, most children with intellectual disability can learn to do many things. It just takes them more
time and effort than other children.
How is Intellectual Disability Diagnosed?
Intellectual disability is the currently preferred term for the disability historically referred to as mental
retardation. Although the preferred name is intellectual disability, the authoritative definition and
assumptions put forth by the American Association on Intellectual and Developmental Disabilities (AAIDD)
remain the same as those found in the Mental Retardation: Definition, Classification and Systems of
Supports manual (Luckasson et al., 2002).
The term intellectual disability covers the same population of individuals who were diagnosed previously
with mental retardation in number, kind, level, type, and duration of the disability and the need of people
with this disability for individualized services and supports.
Intellectual disability is diagnosed by looking at two main things. These are:
the ability of a person's brain to learn, think, solve problems, and make sense of the world (called
IQ or intellectual functioning); and
whether the person has the skills he or she needs to live independently (called adaptive behavior,
or adaptive functioning).
Intellectual functioning, or IQ, is usually measured by a test called an IQ test. The average score is 100.
People scoring below 70 to 75 are thought to have an intellectual disability.
To measure adaptive behavior, professionals look at what a child can do in comparison to other children of
his or her age. Certain skills are important to adaptive behavior. These are:
daily living skills, such as getting dressed, going to the bathroom, and feeding one's self;
communication skills, such as understanding what is said and being able to answer;
social skills with peers, family members, adults, and others.
To diagnose an intellectual disability, professionals look at the person's mental abilities (IQ) and his or her
adaptive skills. Both of these are highlighted in the definition provided in the Individuals with Disabilities
Education Act (IDEA). The IDEA is the federal law that guides how schools provide early intervention and
special education and related services to children with disabilities.
IDEA's Definition of Mental Retardation
Our nation's special education law, the IDEA, defines mental retardation as . . .
. . . significantly subaverage general intellectual functioning, existing concurrently with deficits in adaptive
behavior and manifested during the developmental period, that adversely affects a child's educational
performance. [34 Code of Federal Regulations §300.8(c)(6)]
Providing services to help individuals with an intellectual disability has led to a new understanding of the
disability. After the initial diagnosis of intellectual disability is made, we look at a person's strengths and
weaknesses. We also look at how much support or help the person needs to get along at home, in school,
and in the community. This approach gives a realistic picture of each individual. It also recognizes that the
picture can change. As the person grows and learns, his or her ability to get along in the world grows as
ell.w

How Common is Intellectual Disability?
As many as 3 out of every 100 people in the country have an intellectual disability (The Arc, 2001). Nearly
614,000 children ages 3 to 21 have some level of intellectual disability and need special education in
school (Twenty-sixth Annual Report to Congress, U.S. Department of Education, 2006). In fact, 1 out of
every 10 children who need special education has some form of intellectual disability.
What Are the Signs of Intellectual Disability?
There are many signs of intellectual disability. For example, children with intellectual disability may:
sit up, crawl, or walk later than other children;
learn to talk later, or have trouble speaking,
find it hard to remember things,
not understand how to pay for things,
have trouble understanding social rules,
have trouble seeing the consequences of their actions,
have trouble solving problems, and/or
have trouble thinking logically.
About 87% of people with intellectual disability will only be a little slower than average in learning new
information and skills. When they are children, their limitations may not be obvious. They may not even be
diagnosed as having intellectual disability until they get to school. As they become adults, many people
with intellectual disability can live independently. Other people may not even consider them as having
an intellectual disability.
The remaining 13% of people with intellectual disability score below 50 on IQ tests. These people will
have more difficulty in school, at home, and in the community. A person with more severe intellectual
disability will need more intensive support his or her entire life. Every child with intellectual disability is
able to learn, develop, and grow. With help, all children with intellectual disability can live a satisfying life.
What About School?
A child with an intellectual disability can do well in school but is likely to need individualized help.
Fortunately, states are responsible for meeting the educational needs of children with disabilities.
For children up to age three, services are provided through an early intervention system. Staff work with
the child's family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP
will describe the child's unique needs. It also describes the services the child will receive to address those
needs. The IFSP will emphasize the unique needs of the family, so that parents and other family members
will know how to help their young child with an intellectual disability. Early intervention services may be
provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income. In
some states, early intervention services may be at no cost to parents.
For eligible school-aged children (including preschoolers), special education and related services are made
available through the school system. School staff will work with the child's parents to develop an
Individualized Education Program, or IEP. The IEP is similar to an IFSP. It describes the child's unique
needs and the services that have been designed to meet those needs. Special education and related
services are provided at no cost to parents.
Many children with an intellectual disability need help with adaptive skills, which are skills needed to live,
work, and play in the community. Teachers and parents can help a child work on these skills at both
school and home. Some of these skills include:
communicating with others;
taking care of personal needs (dressing, bathing, going to the bathroom);
health and safety;

home living (helping to set the table, cleaning the house, or cooking dinner);
social skills (manners, knowing the rules of conversation, getting along in a group, playing a
game);
reading, writing, and basic math; and
as they get older, skills that will help them in the workplace.
Supports or changes in the classroom (called adaptations) help most students with an intellectual
disability. Some common changes that help students are listed under Tips for Teachers. The resources
below also include ways for parents to help their child with an intellectual disability.
Tips for Parents
Learn about intellectual disability. The more you know, the more you can help yourself and your
child. See the resources and organizations in the boxes at the right.
Encourage independence in your child. For example, help your child learn daily care skills, such as
dressing, feeding him or herself, using the bathroom, and grooming.
Give your child chores. Keep her age, attention span, and abilities in mind. Break down jobs into
smaller steps. For example, if your child's job is to set the table, first ask her to get the right
number of napkins. Then have her put one at each family member's place at the table. Do the
same with the utensils, going one at a time. Tell her what to do, step by step, until the job is done.
Demonstrate how to do the job. Help her when she needs assistance. Give your child frequent
feedback. Praise your child when he or she does well. Build your child's abilities.
Find out what skills your child is learning at school. Find ways for your child to apply those skills at
home. For example, if the teacher is going over a lesson about money, take your child to the
supermarket with you. Help him count out the money to pay for your groceries. Help him count
the change.
Find opportunities in your community for social activities, such as scouts, recreation center
activities, sports, and so on. These will help your child build social skills as well as to have fun.
Talk to other parents whose children have intellectual disability. Parents can share practical advice
and emotional support. Call NICHCY (1.800.695.0285) and ask how to find a parent group near
you.
Meet with the school and develop an educational plan to address your child's needs. Keep in touch
with your child's teachers. Offer support. Find out how you can support your child's school learning
at home.
Tips for Teachers
Learn as much as you can about intellectual disability. The organizations and resources listed in
the boxes at the right will help you identify specific techniques and strategies to support the
student educationally. We've also listed some strategies below.
Recognize that you can make an enormous difference in this student's life! Find out what the
student's strengths and interests are, and emphasize them. Create opportunities for success.
If you are not part of the student's Individualized Education Program (IEP) team, ask for a copy of
his or her IEP. The student's educational goals will be listed there, as well as the services and
classroom accommodations he or she is to receive. Talk to specialists in your school (e.g., special
educators), as necessary. They can help you identify effective methods of teaching this student,
ways to adapt the curriculum, and how to address the student's IEP goals in your classroom.
Be as concrete as possible. Demonstrate what you mean rather than just giving verbal directions.
Rather than just relating new information verbally, show a picture. And rather than just showing a
picture, provide the student with hands-on materials and experiences and the opportunity to try
things out.
Break longer, new tasks into small steps. Demonstrate the steps. Have the student do the steps,
one at a time. Provide assistance, as necessary.
Give the student immediate feedback.

Teach the student academic and life skills such as daily living, social skills, and occupational
awareness and exploration, as appropriate. Involve the student in group activities or clubs.
Work together with the student's parents and other school personnel to create and implement an
educational plan tailored to meet the student's needs. Regularly share information about how the
student is doing at school and at home.
Contact NICHCY
P.O. Box 1492 Washington,
DC 20013
Tel: (800) 695-0285
Fax: (202) 884-8441
nichcy@aed.org
Publication of this Web resource page is made possible
through Cooperative Agreement #H326N030003 between AED and the
Office of Special Education Programs of the U.S. Department of
Education (Office of Special Education Programs of the U.S.
Department of Education (OSEP). The contents of this document do
not necessarily reflect the views or policies of the Department of
Education, nor does mention of trade names, commercial products, or
organizations imply endorsement by the U.S. Government.
Readers are encouraged to copy and share this information, but please credit the National Dissemination Center for Children with Disabilities
(NICHCY). NICHCY relies on feedback from users to enhance our collection, development, and dissemination of information. We encourage you to
share your ideas and feedback with us! Please contact us at our email address (nichcy@aed.org) or visit the NICHCY Feedback Page at:
www.nichcy.org/Pages/Feedback.aspx.
NICHCY thanks our Project Officer, Dr. Judy L. Shanley, at the Office of Special Education Programs (OSEP), U.S. Department of Education.
Publication of this Web resource page is made possible through Cooperative Agreement #H326N030003 between the Academy for Educational
Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily
reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply
endorsement by the U.S. Government.
NICHCY · P.O. Box 1492 · Washington, DC 20013
(800) 695-0285 v/tty · (202) 884-8441 fax
nichcy@aed.org · www.nichcy.org

4 DDDDDefefefefefinitinitinitinitinitionionionionion 4
Peoplewithseveredisabilitiesare
those who traditionally have been
labeled as having severe or profound
mental retardation. These people
require ongoing extensive support in
more than one major life activity in
order to participate in integrated
community settings and enjoy the
quality of life available to people with
fewer or no disabilities. They
frequently have additional disabilities,
including movement difficulties,
sensory losses, and behavior
problems.
4 IIIIIncidencencidencencidencencidencencidence 4
In the 2000-2001 school year, the
states reported to the U.S. Department
of Education that they were providing
special education and related services to
122,559 students with multiple
disabilities(Twenty-fourthAnnualReport
to Congress, 2002).
4 CharCharCharCharCharacteristacteristacteristacteristacteristicsicsicsicsics 4
Peoplewithsevereormultiple
disabilities may exhibit a wide range
of characteristics, depending on the
combination and severity of disabili-
ties, and the person’s age. There are,
however, some traits they may share,
including:
• Limited speech or communica-
tion;
• Difficulty in basic physical
mobility;
• Tendency to forget skills through
disuse;
• Trouble generalizing skills from
one situation to another; and
• A need for support in major life
activities, e.g., domestic, leisure,
community use, vocational.
SSSSSevevevevevere/Mere/Mere/Mere/Mere/Multultultultultipleipleipleipleiple
DisabiDisabiDisabiDisabiDisabilitlitlitlitlitiesiesiesiesies
SSSSSevevevevevere/Mere/Mere/Mere/Mere/Multultultultultipleipleipleipleiple
DisabiDisabiDisabiDisabiDisabilitlitlitlitlitiesiesiesiesies
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org

NICHCY: 1.800.695.0285 2 Fact Sheet on Severe Disabilities (FS10)
All of our publications and
resource lists are online—
help yourself! Visit us at:
www.nichcy.org
us:
nichcy@aed.org
1.800.695.0285
(V/TTY)
4 MMMMMedical Iedical Iedical Iedical Iedical Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4
A variety of medical problems may accompany severe
disabilities.Examplesincludeseizures,cerebralpalsy,
sensory loss, hydrocephalus, and scoliosis. These
conditions should be considered when establishing
services. A multidisciplinary team consisting of the
student’s parents, educational specialists, and
medical specialists in the areas in which the
individualdemonstratesproblemsshouldwork
together to plan and coordinate necessary services.
4 EEEEEducatducatducatducatducational Iional Iional Iional Iional Implicatmplicatmplicatmplicatmplicationsionsionsionsions 4
In the past, students with severe and/or multiple disabilities
were routinely excluded from public schools. Since the
implementation of Public Law 94-142 (the Education of the
Handicapped Act, now called the Individuals with Disabilities
Education Act, or IDEA), public schools now serve large
numbers of students with severe and/or multiple disabilities.
Educational programming is likely to begin as early as infancy.
At that time, as well as later on, the primary focus is upon
increasing the child’s independence.
In order to be effective, educational programs need to
incorporate a variety of components to meet the consider-
able needs of individuals with severe and/or multiple
disabilities. Programs should asseess needs in four major
areas: domestic, leisure/recreational, community, and
vocational. These assessments enable the
identification of functional objectives
(objectives which will result in the
learner’s increased skill and indepen-
dence in dealing with the routine
activities of his/her life). Instruction
should include: Expression of choice;
communication; functional skill
development; and age-appropriate
social skills training.
Related services are of great impor-
tance, and the multidisciplinary approach is
crucial. Appropriate people such as speech and language
therapists, physical and occupational therapists, and medical

NICHCY: 1.800.695.0285 3 Fact Sheet on Severe Disabilities (FS10)
Other HelpfulOther HelpfulOther HelpfulOther HelpfulOther Helpful
These NICHCY
topics important to
disability.
Parenting a Child
with Special Needs
Your Child’s
Evaluation
Education Services
IEP
contacting us.
specialists need to work closely with classroom teachers
and parents. Because of problems with skill generaliza-
tion, related services are best offered during the natural
routine in the school and community rather than
removing a student from class for isolated therapy.
Frequently, classroom arrangements must take into
consideration students’ needs for medications, special
diets, or special equipment. Adaptive aids and
equipment enable students to increase their range of
functioning. For example, in recent years computers
have become effective communication devices. Other
aids include: wheelchairs, typewriters, headsticks (head
gear), clamps, modified handles on cups and silverware,
and communication boards. Computerized communi-
cation equipment and specially built vocational
equipment also play important roles in adapting
working environments for people with serious
movement limitations.
Integration with nondisabled peers is another
important component of the educational setting.
Attending the same school and participating in the
same activities as their nondisabled peers are
crucial to the development of social skills
and friendships for people with severe
disabilities. Integration also benefits
nondisabled peers and professionals
through positive attitude change.
Beginning as early as the
elementary school years, community-
based instruction is an important
characteristic of educational program-
ming. In order to increase the student’s
ability to generalize (transfer) skills to
appropriate situations, this type of instruction
takes place in the actual setting where the skills will be
used. As students grow older, increasing time is spent in
the community; high school students may spend as
much as 90 percent of their day there. Programs should
draw on existing adult services in the community,
including group homes, vocational programs, and
recreational settings.
To be effective,
educationalprograms
need to incorporate a
variety of components to
meet the considerable
needs of individuals with
severe and/or multiple
disabilities.

Publication of this document is made possible through Cooperative Agreement #H326N030003
between the Academy for Educational Development and the Office of Special Education Programs of the
U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies
of the Department of Education, nor does mention of trade names, commercial products, or organizations
imply endorsement by the U.S. Government.
FS10, January 2004
4
In light of the current Vocational Rehabilitation Act and the
practice of supported employment, schools are now using
school-to-work transition planning and working toward job
placement in integrated, competitive settings rather than
sheltered employment and day activity centers.
Downing, J.E. (2002). Including students with severe and
multiple disabilities in typical classrooms: Practical strategies for
teachers (2nd
ed.). Baltimore, MD: Paul H. Brookes. (Phone:
800.638.3775. Web: www.brookespublishing.com)
Klein, M.D., Chen, D., Haney, M. (2002). PLAI: A guide to
communication with young children who have multiple disabilities.
Baltimore, MD: Paul H. Brookes. (See contact information
above.)
Orelove, F., Sobsey, D. (1996). Educating children with
multiple disabilities: A transdisciplinary approach (3rd
ed.). Balti-
more, MD: Paul H. Brookes. (See contact information above.)
Rainforth, B., York, J., Macdonald, C. (1997). Collaborative
teams for students with severe disabilities: Integrating therapy and
educational services (2nd
ed.). Baltimore, MD: Paul H. Brookes.
TASH Newsletter. Monthly newsletter from TASH. (See contact
information under “Organizations.”)
4 OrganizatOrganizatOrganizatOrganizatOrganizationsionsionsionsions 4
TASH
29 W. Susquehanna Avenue, Suite 210
Baltimore, MD 21204
410.828.8274; 410.828.1306 (TTY)
info@tash.org
www.tash.org
National Rehabilitation Information
Center (NARIC)
4200 Forbes Boulevard, Suite 202
Lanham, MD 20706
301.459.5900; 800.346.2742 (Toll-free)
naricinfo@heitechservices.com
www.naric.com
The Arc of the United States
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
301.565.3842
info@thearc.org;
www.thearc.org
United Cerebral Palsy Associations, Inc.
1660 L Street NW, Suite 700
800.872.5827 (Toll-free)
202.776.0406; 202.973.7197 (TTY)
www.ucp.org

May 2006May 2006May 2006May 2006May 2006
✧ SSSSSusan’usan’usan’usan’usan’s Ss Ss Ss Ss Storytorytorytorytory ✧
Susan was 7 years old when she was
hit by a car while riding her bike. She
broke her arm and leg. She also hit her
head very hard. The doctors say she
sustained a traumatic brain injury.
When she came home from the hospi-
tal, she needed lots of help, but now she
looks fine.
In fact, that’s part of the problem,
especially at school. Her friends and
teachers think her brain has healed
because her broken bones have. But
there are changes in Susan that are hard
to understand. It takes Susan longer to
do things. She has trouble remembering
things. She can’t always find the words
she wants to use. Reading is hard for her
now. It’s going to take time before
people really understand the changes
they see in her.
✧ What is TWhat is TWhat is TWhat is TWhat is TBI?BI?BI?BI?BI? ✧
A traumatic brain injury (TBI) is an
injury to the brain caused by the head
being hit by something or shaken
violently. (The exact definition of TBI,
according to special education law, is
given in the box on the right.) This
injury can change how the person acts,
moves, and thinks. A traumatic brain
injury can also change how a student
learns and acts in school. The term TBI
is used for head injuries that can cause
changes in one or more areas, such as:
• thinking and reasoning,
• understanding words,
• remembering things,
• paying attention,
• solving problems,
• thinking abstractly,
• talking,
• behaving,
• walking and other physical
activities,
• seeing and/or hearing, and
• learning.
The term TBI is not used for a
person who is born with a brain injury.
It also is not used for brain injuries that
happen during birth.
The definition of TBI in the box on
page 4 comes from the Individuals with
Disabilities Education Act (IDEA). The
IDEA is the federal law that guides how
schools provide special education and
related services to children and youth
with disabilities.
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
TTTTTrrrrraumataumataumataumataumatic Bric Bric Bric Bric Braaaaain Iin Iin Iin Iin InjurynjurynjurynjurynjuryTTTTTrrrrraumataumataumataumataumatic Bric Bric Bric Bric Braaaaain Iin Iin Iin Iin Injurynjurynjurynjurynjury

NICHCY: 1.800.695.0285 2 Fact Sheet on Traumatic Brain Injury (FS18)
✧ HHHHHow Common is Tow Common is Tow Common is Tow Common is Tow Common is TBI?BI?BI?BI?BI? ✧
More than one million children receive brain
injuries each year. More than 30,000 of these
children have lifelong disabilities as a result of the
brain injury.
✧ What AWhat AWhat AWhat AWhat Are tre tre tre tre the She She She She Signs of Tigns of Tigns of Tigns of Tigns of TBI?BI?BI?BI?BI? ✧
The signs of brain injury can be very different
depending on where the brain is injured and how
severely. Children with TBI may have one or more
difficulties, including:
• Physical disabilities: Individuals with TBI may
have problems speaking, seeing, hearing, and using
their other senses. They may have headaches and
feel tired a lot. They may also have trouble with skills
such as writing or drawing. Their muscles may
suddenly contract or tighten (this is called spastic-
ity). They may also have seizures. Their balance and
walking may also be affected. They may be partly or
completely paralyzed on one side of the body, or
both sides.
• Difficulties with thinking: Because the brain has
been injured, it is common that the person’s ability
to use the brain changes. For example, children with
TBI may have trouble with short-term memory
(being able to remember something from one
minute to the next, like what the teacher just said).
They may also have trouble with their long-term
memory (being able to remember information from
a while ago, like facts learned last month). People
with TBI may have trouble concentrating and only
be able to focus their attention for a short time. They
may think slowly. They may have trouble talking
and listening to others. They may also have difficulty
with reading and writing, planning, understanding
the order in which events happen (called sequenc-
ing), and judgment.
• Social, behavioral, or emotional problems: These
difficulties may include sudden changes in mood,
anxiety, and depression. Children with TBI may
have trouble relating to others. They may be
restless and may laugh or cry a lot. They may not
have much motivation or much control over their
emotions.
A child with TBI may not have all of the above
difficulties. Brain injuries can range from mild to
severe, and so can the changes that result from the
injury. This means that it’s hard to predict how an
individual will recover from the injury. Early and
ongoing help can make a big difference in how the
child recovers. This help can include physical or
occupational therapy, counseling, and special
education.
It’s also important to know that, as the child
grows and develops, parents and teachers may
notice new problems. This is because, as students
grow, they are expected to use their brain in new
and different ways. The damage to the brain from
the earlier injury can make it hard for the student
to learn new skills that come with getting older.
Sometimes parents and educators may not even
realize that the student’s difficulty comes from the
earlier injury.
✧ What About SWhat About SWhat About SWhat About SWhat About Schoolchoolchoolchoolchool????? ✧
Although TBI is very common, many medical
and education professionals may not realize that
some difficulties can be caused by a childhood
brain injury. Often, students with TBI are thought
to have a learning disability, emotional distur-
bance, or mental retardation. As a result, they don’t
receive the type of educational help and support
they really need.
When children with TBI return to school, their
educational and emotional needs are often very
different than before the injury. Their disability has
happened suddenly and traumatically. They can
often remember how they were before the brain
injury. This can bring on many emotional and
social changes. The child’s family, friends, and
teachers also recall what the child was like before
the injury. These other people in the child’s life
may have trouble changing or adjusting their
expectations of the child.
Therefore, it is extremely important to plan
carefully for the child’s return to school. Parents
will want to find out ahead of time about special
education services at the school. This information
is usually available from the school’s principal or
special education teacher. The school will need to
evaluate the child thoroughly. This evaluation will
let the school and parents know what the
student’s educational needs are. The school and
parents will then develop an Individualized Educa-
tion Program (IEP) that addresses those educa-
tional needs.
It’s important to remember that the IEP is a
flexible plan. It can be changed as the parents, the
school, and the student learn more about what the
student needs at school.

Fact Sheet on Traumatic Brain Injury (FS18) 3 NICHCY: 1.800.695.0285
❑ Find out as much as you can about the
child’s injury and his or her present needs.
Find out more about TBI. See the list of
resources and organizations at the end of
this publication.
❑ Give the student more time to finish
schoolwork and tests.
❑ Give directions one step at a time. For
tasks with many steps, it helps to give the
student written directions.
❑ Show the student how to perform new
tasks. Give examples to go with new ideas
and concepts.
❑ Have consistent routines. This helps the
student know what to expect. If the
routine is going to change, let the student
know ahead of time.
❑ Check to make sure that the student has
actually learned the new skill. Give the
student lots of opportunities to practice
the new skill.
❑ Show the student how to use an assign-
ment book and a daily schedule. This
helps the student get organized.
❑ Realize that the student may get tired
quickly. Let the student rest as needed.
❑ Reduce distractions.
❑ Keep in touch with the student’s parents.
Share information about how the stu-
dent is doing at home and at school.
❑ Be flexible about expectations. Be pa-
tient. Maximize the student’s chances for
success.
❑ Learn about TBI. The more
you know, the more you can
help yourself and your child.
See the list of resources and
organizations at the end of
this publication.
❑ Work with the medical team to understand
your child’s injury and treatment plan.
Don’t be shy about asking questions. Tell
them what you know or think. Make sugges-
tions.
❑ Keep track of your child’s treatment. A 3-
ring binder or a box can help you store
this history. As your child recovers, you
may meet with many doctors, nurses, and
others. Write down what they say. Put any
paperwork they give you in the notebook
or throw it in the box. You can’t remember
all this! Also, if you need to share any of
this paperwork with someone else, make a
copy. Don’t give away your original!
❑ Talk to other parents whose children have
TBI. There are parent groups all over the
U.S. Parents can share practical advice and
emotional support. Call NICHCY (800-
695-0285) or find resources in your state,
online at (www.nichcy.org/states.htm) to
locate parent groups near you.
❑ If your child was in school before the injury,
plan for his or her return to school. Get in
touch with the school. Ask the principal
about special education services. Have the
medical team share information with the
school.
❑ When your child returns to school, ask the
school to test your child as soon as pos-
sible to identify his or her special educa-
tion needs. Meet with the school and help
develop a plan for your child called an
Individualized Education Program (IEP).
❑ Keep in touch with your child’s teacher.
Tell the teacher about how your child is
doing at home. Ask how your child is
doing in school.

DeBoskey, D.S. (Ed.). (1996). Coming home: A
discharge manual for families of persons with a brain
injury. Houston, TX: HDI. (Phone: 800-321-7037;
Web: www.braininjurybooks.com)
DePompei, R., Blosser, J., Savage, R., Lash, M.
(1998). Special education: IEP checklist for a student
with a brain injury. Wolfeboro, NH: LA Publishing/
Training. (Phone: 919-562-0015.
Web: www.lapublishing.com)
DePompei, R., Cluett, B. (1998). All about me!
Wolfeboro, NH: LA Publishing/Training. (For use by
elementary school children with TBI. See contact
information above.)
DePompei, R., Tyler, J. (2004). Learning and
cognitive communication challenges: Developing
educational programs for students with brain injuries.
Wolfeboro, NH: LA Publishing/Training. (See contact
information above.)
Hibbard, M., Gordon, W., Martin, T., Rashkin, B.,
Brown, M. (2001). Students with traumatic brain injury:
Identification, assessment, and classroom accommodations.
New York: Research and Training Center on Community
Integration of Individuals with Traumatic Brain Injury.
(Phone: 888-241-5152; Web: www.mssm.edu/tbinet/alt/
pubs/tbikids.pdf
Lash, M., Wolcott, G., Pearson, S. (2000). Signs
and strategies for educating students with brain injuries: A
practical guide for teachers and schools. (2nd
ed.). Hous-
ton, TX: HDI. (See contact information above.)
Schoenbrodt, L. (Ed.). (2001). Children with trau-
matic brain injury: A parents’ guide. Bethesda, MD:
Woodbine House. (Phone: 800-843-7323;
Senelick, R.C., Dougherty, K. (2001). Living with
brain injury: A guide for families (2nd
ed.). San Diego, CA:
Singular. (Phone: 800-347-7707;
Web: www.delmarhealthcare.com)
Snyder, H. (1998). Elvin the elephant who forgets.
Wolfeboro, NH: LA Publishing/Training. (A 16-page
picture book for children. See contact information
above.)
✧ OrganizationsOrganizationsOrganizationsOrganizationsOrganizations ✧
Brain Injury Association (formerly the National Head Injury
Foundation), 8201 Greensboro Drive, Suite 611
Mclean, VA 22102. Phone: 703.761.0750;
800.444.6443 (Family Helpline)
Email: FamilyHelpline@biausa.org
Web site: www.biausa.org
Emergency Medical Services for Children—
National Resource Center, 111 Michigan Avenue N.W.,
Washington, DC 20010. Phone: 202.884.4927
Email: information@emscnrc.com
Web site: www.ems-c.org/
Epilepsy Foundation-National Office, 4351 Garden City
Drive, Suite 500, Landover, MD 20785-7223.
Phone: 301.459.3700; 800.332.1000; 800.332.2070 (TTY)
Web site: www.epilepsyfoundation.org
Family Caregiver Alliance, 180 Montgomery St., Suite 1100
San Francisco, CA 94104. Phone: 415.434.3388;
800.445.8106 Email: info@caregiver.org
Web site: www.caregiver.org
Family Voices, 2340 Alamo SE, Suite 102
Albuquerque, NM 87106. Phone: 505.872.4774; 888.835.5669
Email: kidshealth@familyvoices.org
Web site: www.familyvoices.org
Head Injury Hotline, 212 Pioneer Building,
Seattle, WA 98104-2221. Phone: 206.621.8558
Email: brain@headinjury.com
Web site: www.headinjury.com
National Resource Center for Traumatic Brain Injury
Department of Physical Medicine and Rehabilitation
P.O. Box 980542 Richmond, VA 23298-0542 .
Phone: 804.828.9055 E-mail: mbking@hsc.vcu.edu
Web site: www.neuro.pmr.vcu.edu
Our nation’s special education law, the Individuals with Disabili-
ties Education Act (IDEA) defines traumatic brain injury as. . .
“. . . an acquired injury to the brain caused by an external
physical force, resulting in total or partial functional disabil-
ity or psychosocial impairment, or both, that adversely affects
a child’s educational performance. The term applies to open
or closed head injuries resulting in impairments in one or
more areas, such as cognition; language; memory; attention;
reasoning; abstract thinking; judgment; problem-solving;
sensory, perceptual, and motor abilities; psycho-social
behavior; physical functions; information processing; and
speech. The term does not apply to brain injuries that are
congenital or degenerative, or to brain injuries induced by
birth trauma.” 34 Code of Federal Regulations §300.7(c)(12)
Publication of this document is made possible through Cooperative Agreement #H326N030003 between the Acad-
emy for Educaitonal Development and the Office of Special Education Programs of the U.S. Department of Education.
The contenets of this document do not necessarily reflect the views or policies of the Department of Education, nor
does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.
This publication is copyright free. Readers are encouraged to copy and share it, but please credit the National Dissemina-
tion Center for Children with Disabilities (NICHCY).
FS18, May 2006

According to the Epilepsy
Foundation of America, epilepsy is a
physical condition that occurs when
there is a sudden, brief change in how
the brain works. When brain cells are
not working properly, a person’s
consciousness, movement, or actions
may be altered for a short time. These
physical changes are called epileptic
seizures. Epilepsy is therefore
sometimes called a seizure disorder.
Epilepsy affects people in all nations
and of all races.
Some people can experience a
seizure and not have epilepsy. For
example, many young children have
convulsions from fevers. These febrile
convulsions are one type of seizure.
Other types of seizures not classified
as epilepsy include those caused by an
imbalance of body fluids or chemicals
or by alcohol or drug withdrawal. A
single seizure does not mean that the
person has epilepsy.
About two million Americans have
epilepsy; of the 125,000 new cases
that develop each year, up to 50% are
in children and adolescents.
4 CharacteristicsCharacteristicsCharacteristicsCharacteristicsCharacteristics 4
Although the symptoms listed
below are not necessarily indicators of
epilepsy, it is wise to consult a doctor
if you or a member of your family
experiences one or more of them:
• “Blackouts” or periods of
confused memory;
• Episodes of staring or
unexplained periods of
unresponsiveness;
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
EEEEEpipipipipilepsylepsylepsylepsylepsyEEEEEpipipipipilepsylepsylepsylepsylepsy

NICHCY: 1.800.695.0285 2 Fact Sheet on Epilepsy (FS6)
www.nichcy.org
us:
nichcy@aed.org
1.800.695.0285
(V/TTY)
• Involuntary movement of arms and legs;
• “Fainting spells” with incontinence or followed
by excessive fatigue; or
• Odd sounds, distorted perceptions, episodic
feelings of fear that cannot be explained.
Seizures can be generalized, meaning that all
brain cells are involved. One type of generalized
seizure consists of a convulsion with a complete
loss of consciousness. Another type looks like a
brief period of fixed staring.
Seizures are partial when those brain cells
not working properly are limited to one part of
the brain. Such partial seizures may cause periods
of “automatic behavior” and altered consciousness.
This is typified by purposeful-looking behavior, such as
buttoning or unbuttoning a shirt. Such behavior,
however, is unconscious, may be repetitive, and is
usually not recalled.
Students with epilepsy or seizure disorders are
eligible for special education and related services under
the Individuals with Disabilities Education Act (IDEA).
Epilepsy is classified as “other health
impaired”andanIndividualized
Education Program (IEP) would be
developedtospecifyappropriate
services. Some students may
have additional conditions such
as learning disabilities along
withtheseizuredisorders.
Seizures may interfere with
the child’s ability to learn. If the
student has the type of seizure
characterized by a brief period of fixed
staring, he or she may be missing parts of
what the teacher is saying. It is important that
the teacher observe and document these episodes and
report them promptly to parents and to school nurses.

Depending on the type of seizure or how often they
occur, some children may need additional assistance to
help them keep up with classmates. Assistance can include
adaptations in classroom instruction, first aid instruction
on seizure management to the student’s teachers, and
counseling, all of which should be written in the IEP.
It is important that the teachers and school staff are
informed about the child’s condition, possible effects of
medication, and what to do in case a seizure occurs at
school. Most parents find that a friendly conversation
with the teacher(s) at the beginning of the school year is
the best way to handle the situation. Even if a child has
seizures that are largely controlled by medication, it is still
best to notify the school staff about the condition.
School personnel and the family should work together
to monitor the effectiveness of medication as well as any
side effects. If a child’s physical or intellectual skills seem
to change, it is important to tell the doctor. There may
also be associated hearing or perception problems caused
by the brain changes. Written observations of both the
family and school staff will be helpful in discussions
with the child’s doctor.
Children and youth with epilepsy must
also deal with the psychological and
social aspects of the condition. These
include public misperceptions and fear of
seizures, uncertain occurrence, loss of self
control during the seizure episode, and
compliance with medications. To help
children feel more confident about
themselves and accept their epilepsy, the
school can assist by providing epilepsy
education programs for staff and students,
including information on seizure recognition and
first aid.
Students can benefit the most when both the family
and school are working together. There are many materials
available for families and teachers so that they can
understand how to work most effectively as a team.
NICHCY: 1.800.695.0285 3 Fact Sheet on Epilepsy (FS6)
These NICHCY
topics important to
disability.
Parenting a Child
with Special Needs
Your Child’s
Evaluation
Education Services
IEP
contacting us.
Students with
epilepsy or seizure
disorders are
eligible for special
education and
related services
under IDEA.

4
U.S. Department of Education. The contents of this document do not necessarily reflect the views or
policies of the Department of Education, nor does mention of trade names, commercial products, or
organizations imply endorsement by the U.S. Government.
FS6, January 2004
Epilepsy Foundation of America. (n.d.). Epilepsy: Questions and
answers about seizure disorders. Landover, MD: Author. (See address
below.)
Freeman, J.M., Vining, E.P.G., Pillas, D.J. (2003). Seizures and
epilepsy in childhood: A guide for parents (3rd
ed.). Baltimore, MD:
Johns Hopkins University Press. (Phone: 800.537.5487.
Web: www.press.jhu.edu/books/index.html)
Lechtenberg, R. (2002). Epilepsy and the family: A new guide (2nd
ed.).
Cambridge, MA: Harvard University Press. (Phone: 800.448.2242.
Web: www.hup.harvard.edu)
Epilepsy Foundation—National Office
4351 Garden City Drive
Landover,MD20785-7223
301.459.3700;800.332.1000
301.577.0100 (For publications)
www.epilepsyfoundation.org
National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health
P.O. Box 5801
Bethesda, MD 20824
301.496.5751;800.352.9424
www.ninds.nih.gov/

January 2004January 2004January 2004January 2004January 2004
✧ Mario’Mario’Mario’Mario’Mario’s Ss Ss Ss Ss Storytorytorytorytory ✧
Mario is 10 years old. When he was
7, his family learned he had AD/HD. At
the time, he was driving everyone crazy.
At school, he couldn’t stay in his seat or
keep quiet. At home, he didn’t finish his
homework or his chores. He did scary
things, too, like climb out of his win-
dow onto the roof and run across the
street without looking.
Things are much better now. Mario
was tested by a trained professional to
find out what he does well and what
gives him trouble. His parents and
teachers came up with ways to help him
at school. Mario has trouble sitting still,
so now he does some of his work
standing up. He’s also the student who
tidies up the room and washes the
chalkboard. His teachers break down his
lessons into several parts. Then they
have him do each part one at a time.
This helps Mario keep his attention on
his work.
At home, things have changed, too.
Now his parents know why he’s so
active. They are careful to praise him
when he does something well. They
even have a reward program to encour-
age good behavior. He earns “good job
points” that they post on a wall chart.
After earning 10 points he gets to choose
something fun he’d like to do. Having a
child with AD/HD is still a challenge,
but things are looking better.
✧ What is AD/HD?What is AD/HD?What is AD/HD?What is AD/HD?What is AD/HD? ✧
Attention-Deficit/Hyperactivity
Disorder (AD/HD) is a condition that
can make it hard for a person to sit still,
control behavior, and pay attention.
These difficulties usually begin before
the person is 7 years old. However, these
behaviors may not be noticed until the
child is older.
Doctors do not know just what
causes AD/HD. However, researchers
who study the brain are coming closer
to understanding what may cause AD/
HD. They believe that some people with
AD/HD do not have enough of certain
chemicals (called neurotransmitters) in
their brain. These chemicals help the
brain control behavior.
Parents and teachers do not cause
AD/HD. Still, there are many things
that both parents and teachers can do
to help a child with AD/HD.
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
AAAAAttenttenttenttenttentttttion-Dion-Dion-Dion-Dion-Defefefefeficit/Hicit/Hicit/Hicit/Hicit/Hyperyperyperyperyperactactactactactivivivivivititititityyyyy
Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)
AAAAAttenttenttenttenttentttttion-Dion-Dion-Dion-Dion-Defefefefeficit/Hicit/Hicit/Hicit/Hicit/Hyperyperyperyperyperactactactactactivivivivivititititityyyyy
Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)Disorder (AD/HD)

NICHCY: 1.800.695.0285 2 Fact Sheet on AD/HD (FS19)
✧ How Common is AD/HD?How Common is AD/HD?How Common is AD/HD?How Common is AD/HD?How Common is AD/HD? ✧
As many as 5 out of every 100 children in school may
have AD/HD. Boys are three times more likely than girls
to have AD/HD.
✧ What AWhat AWhat AWhat AWhat Are tre tre tre tre the She She She She Signs of AD/HD?igns of AD/HD?igns of AD/HD?igns of AD/HD?igns of AD/HD? ✧
There are three main signs, or symptoms, of
AD/HD. These are:
◆ problems with paying attention,
◆ being very active (called hyperactivity), and
◆ acting before thinking (called impulsivity).
More information about these symptoms is listed in
a book called the Diagnostic and Statistical Manual of
Mental Disorders (DSM), which is published by the
American Psychiatric Association (2000). Based on these
symptoms, three types of AD/HD have been found:
◆ inattentive type, where the person can’t seem to get
focused or stay focused on a task or activity;
◆ hyperactive-impulsive type, where the person is very
active and often acts without thinking; and
◆ combined type, where the person is inattentive,
impulsive, and too active.
Inattentive type. Many children with AD/HD have
problems paying attention. Children with the inattentive
type of AD/HD often:
◆ do not pay close attention to details;
◆ can’t stay focused on play or school work;
◆ don’t follow through on instructions or finish
school work or chores;
◆ can’t seem to organize tasks and activities;
◆ get distracted easily; and
◆ lose things such as toys, school work, and books.
(APA, 2000, pp. 85-86)
Hyperactive-impulsive type. Being too active is prob-
ably the most visible sign of AD/HD. The hyperactive
child is “always on the go.” (As he or she gets older, the
level of activity may go down.) These children also act
before thinking (called impulsivity). For example, they
may run across the road without looking or climb to the
top of very tall trees. They may be surprised to find
themselves in a dangerous situation. They may have no
idea of how to get out of the situation.
Hyperactivity and impulsivity tend to go
together. Children with the hyperactive-impulsive type of
AD/HD often may:
◆ fidget and squirm;
◆ get out of their chairs when they’re not supposed
to;
◆ run around or climb constantly;
◆ have trouble playing quietly;
◆ talk too much;
◆ blurt out answers before questions have been
completed;
◆ have trouble waiting their turn;
◆ interrupt others when they’re talking; and
◆ butt in on the games others are playing.
(APA, 2000, p. 86)
Combined type. Children with the combined type of
AD/HD have symptoms of both of the types described
above. They have problems with paying attention, with
hyperactivity, and with controlling their impulses.
Of course, from time to time, all children are inatten-
tive, impulsive, and too active. With children who have
AD/HD, these behaviors are the rule, not the exception.
These behaviors can cause a child to have real
problems at home, at school, and with friends. As a
result, many children with AD/HD will feel anxious,
unsure of themselves, and depressed. These feelings are
not symptoms of AD/HD. They come from having
problems again and again at home and in school.
✧ HHHHHow Dow Dow Dow Dow Do Yo Yo Yo Yo You Kou Kou Kou Kou Know if a Chinow if a Chinow if a Chinow if a Chinow if a Childldldldld
Has AD/HD?Has AD/HD?Has AD/HD?Has AD/HD?Has AD/HD? ✧
When a child shows signs of AD/HD, he or she needs
to be evaluated by a trained professional. This person
may work for the school system or may be a professional
in private practice. A complete evaluation is the only way
to know for sure if the child has AD/HD. It is also
important to:
◆ rule out other reasons for the child’s
behavior, and
◆ find out if the child has other disabilities along
with AD/HD.
✧ What About TWhat About TWhat About TWhat About TWhat About Treatreatreatreatreatmenmenmenmenmenttttt????? ✧
There is no quick treatment for AD/HD. However, the
symptoms of AD/HD can be managed. It’s important that
the child’s family and teachers:
◆ find out more about AD/HD;
◆ learn how to help the child manage his or her
behavior;

Fact Sheet on AD/HD (FS19) 3 NICHCY: 1.800.695.0285
❑ Learn about AD/HD. The more you
know, the more you can help
yourself and your child. See the list
of resources and organizations at
the end of this publication.
❑ Praise your child when he or she does well.
Build your child’s abilities. Talk about and
encourage his or her strengths and talents.
❑ Be clear, be consistent, be positive. Set clear
rules for your child. Tell your child what he or
she should do, not just what he shouldn’t do.
Be clear about what will happen if your child
does not follow the rules. Have a reward
program for good behavior. Praise your child
when he or she shows the behaviors you like.
❑ Learn about strategies for managing your
child’s behavior. These include valuable
techniques such as: charting, having a reward
program, ignoring behaviors, natural conse-
quences, logical consequences, and time-out.
Using these strategies will lead to more positive
behaviors and cut down on problem behaviors.
You can read about these techniques in many
books. See “Resources” on page 4 of this
publication.
❑ Talk with your doctor about whether medica-
tion will help your child.
❑ Pay attention to your child’s mental health (and
your own!). Be open to counseling. It can help
you deal with the challenges of raising a child
with AD/HD. It can help your child deal with
frustration, feel better about himself or herself,
and learn more about social skills.
❑ Talk to other parents whose children have AD/
HD. Parents can share practical advice and
emotional support. Call NICHCY to find out
how to find parent groups near you.
❑ Meet with the school and develop an educa-
tional plan to address your child’s needs. Both
you and your child’s teachers should get a
written copy of this plan.
❑ Keep in touch with your child’s teacher. Tell the
teacher how your child is doing at home. Ask
how your child is doing in school. Offer
support.
❑ Learn more about AD/HD. The resources and
organizations at the end of this publication will
help you identify behavior support strategies
and effective ways to support the student
educationally. We’ve listed some strategies
below.
❑ Figure out what specific things are hard for the
student. For example, one student with AD/HD
may have trouble starting a task, while another
may have trouble ending one task and starting
the next. Each student needs different help.
❑ Post rules, schedules, and assignments. Clear
rules and routines will help a student with AD/
HD. Have set times for specific tasks. Call
attention to changes in the schedule.
❑ Show the student how to use an assignment
book and a daily schedule. Also teach study
skills and learning strategies, and reinforce
these regularly.
❑ Help the student channel his or her physical
activity (e.g., let the student do some work
standing up or at the board). Provide regularly
scheduled breaks.
❑ Make sure directions are given step by step, and
that the student is following the directions.
Give directions both verbally and in writing.
Many students with AD/HD also benefit from
doing the steps as separate tasks.
❑ Let the student do work on a computer.
❑ Work together with the student’s parents to
create and implement an educational plan
tailored to meet the student’s needs. Regularly
share information about how the student is
doing at home and at school.
❑ Have high expectations for the student, but be
willing to try new ways of doing things. Be
patient. Maximize the student’s chances for
success.

◆ create an educational program that fits the
child’s individual needs; and
◆ provide medication, if parents and the doctor
feel this would help the child.
✧ What About SWhat About SWhat About SWhat About SWhat About Schoolchoolchoolchoolchool????? ✧
School can be hard for children with AD/HD.
Success in school often means being able to pay
attention and control behavior and impulse. These
are the areas where children with AD/HD have
trouble.
There are many ways the school can help
students with AD/HD. Some students may be
eligible to receive special education services under
the Individuals with Disabilities Education Act (IDEA).
Under the newest amendments to IDEA, passed in
1997, AD/HD is specifically mentioned under the
category of “Other Health Impairment” (OHI). We’ve
included the IDEA’s definition of OHI in the box on
this page. Other students will not be eligible for services
under IDEA. However, they may be eligible for services
under a different law, Section 504 of the Rehabilitation
Act of 1973. In both cases, the school and the child’s
parents need to meet and talk about what special help
the student needs.
Most students with AD/HD are helped by supports or
changes in the classroom (called adaptations). Some
common changes that help students with AD/HD are
listed in the “Tips for Teachers” box on page 3. More
information about helpful strategies can be found in
NICHCY’s briefing paper called Attention-Deficit/
Hyperactivity Disorder. The resources listed below will
also help families and teachers learn more about ways
to help children with AD/HD.
American Academy of Pediatrics. (2001, October).
Clinical practice guideline: Treatment of the school-aged
child with attention-deficit/hyperactivity disorder.
Pediatrics, 108(4), 1033-1044. (Available online at:
www.aap.org/policy/s0120.html)
Barkley, R. (2000). A new look at ADHD: Inhibition,
time, and self-control [video]. New York: Guilford. (Phone:
800.365.7006. Web: www.guilford.com)
Barkley, R. (2000). Taking charge of AD/HD: The com-
plete authoritative guide for parents (Rev. ed.). New York:
Guilford. (Seecontactinformationabove.)
Many students with AD/HD may qualify for special education
services under the “Other Health Impairment” category within the
Individuals with Disabilities Education Act (IDEA). IDEA defines
“other health impairment” as...
“...having limited strength, vitality or alertness, including a
heightened alertness to environmental stimuli, that results in
limited alertness with respect to the educational environment,
that is due to chronic or acute health problems such as asthma,
attention deficit disorder or attention deficit
hyperactivity disorder, diabetes, epilepsy, a heart condition,
hemophilia, lead poisoning, leukemia, nephritis, rheumatic
fever, and sickle cell anemia; and adversely affects a child's
educational performance.”
34 Code of Federal Regulations §300.7(c)(9)
Dendy, C.A.Z. (1999). Teaching teens with ADD and
ADHD: A quick reference guide for teachers and parents.
Bethesda, MD: Woodbine. (Phone: 800.843.7323.
Web: www.woodbinehouse.com.)
Fowler, M. (1999). Maybe you know my kid: A parent’s
guide to helping your child with attention deficit hyperactiv-
ity disorder (3rd
ed.). Kensington, NY: Citadel. (Phone:
877.422.3665. Web: www.kensingtonbooks.com)
Fowler, M. (2002). Attention-deficit/hyperactivity
disorder. NICHCY Briefing Paper, 1-24. (Phone:
800.695.0285. Also available on the Web site:
www.nichcy.org)
National Institutes of Health. (1998). Diagnosis and
treatment of attention deficit hyperactivity disorder. NIH
Consensus Statement, 16(2), 1-37 [On-line]. Available:
odp.od.nih.gov/consensus/cons/110/110_statement.htm
✧ OrganizationsOrganizationsOrganizationsOrganizationsOrganizations ✧
Attention Deficit Disorder Association
P.O. Box 543
Pottstown, PA 19464
484.945.2101
E-mail: mail@add.org
Web: www.add.org
CH.A.D.D. (Children and Adults with Attention-Deficit/
Hyperactivity Disorder)
8181 Professional Place, Suite 150
Landover, MD 20785
301.306.7070
800.233.4050
Web: www.chadd.org
FS19, January 2004
Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this
document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names,
commercial products, or organizations imply endorsement by the U.S. Government.
This publication is copyright free. Readers are encouraged to copy and share it, but please credit the National Dissemination
Center for Children with Disabilities (NICHCY).

Down syndrome is the most
common and readily identifiable
chromosomal condition associated
with mental retardation. It is caused
by a chromosomal abnormality: for
some unexplained reason, an accident
in cell development results in 47
instead of the usual 46 chromosomes.
This extra chromosome changes the
orderly development of the body and
brain. In most cases, the diagnosis of
Down syndrome is made according to
results from a chromosome test
administered shortly after birth.
Approximately 4,000 children with
Down syndrome are born in the U.S.
each year, or about 1 in every 800 to
1,000 live births. Although parents of
any age may have a child with Down
syndrome, the incidence is higher for
women over 35. Most common forms
of the syndrome do not usually occur
more than once in a family.
4 CharacteristicsCharacteristicsCharacteristicsCharacteristicsCharacteristics 4
There are over 50 clinical signs of
Down syndrome, but it is rare to find
all or even most of them in one
person. Some common characteristics
include:
• Poor muscle tone;
• Slanting eyes with folds of
skin at the inner corners
(called epicanthal folds);
• Hyperflexibility (excessive
ability to extend the joints);
• Short, broad hands with a
single crease across the palm
on one or both hands;
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
DDDDDown Sown Sown Sown Sown SyndromeyndromeyndromeyndromeyndromeDDDDDown Sown Sown Sown Sown Syndromeyndromeyndromeyndromeyndrome

• Broad feet with short toes;
• Flat bridge of the nose;
• Short, low-set ears;
• Short neck;
• Small head;
• Small oral cavity; and/or
• Short, high-pitched cries in infancy.
Individuals with Down syndrome are usually
smaller than their nondisabled peers, and their
physical as well as intellectual development is slower.
Besides having a distinct physical appearance, children
with Down syndrome frequently have specific health-
related problems. A lowered resistance to infection makes
these children more prone to respiratory problems. Visual
problems such as crossed eyes and far- or nearsightedness
are higher in individuals with Down syndrome, as are mild
to moderate hearing loss and speech difficulty.
Approximately one third of babies born with Down
syndrome have heart defects, most of which are now
successfully correctable. Some individuals are born with
gastrointestinal tract problems that can be surgically
corrected.
Some people with Down syndrome also may have a
condition known as Atlantoaxial Instability, a
misalignment of the top two vertebrae of the
neck. This condition makes these indi-
viduals more prone to injury if they
participate in activities which overex-
tend or flex the neck. Parents are
urged to have their child examined by
a physician to determine whether or
not their child should be restricted
from sports and activities which place
stress on the neck. Although this
misalignment is a potentially serious
condition, proper diagnosis can help prevent
seriousinjury.
NICHCY: 1.800.695.0285 2 Fact Sheet on Down Syndrome (FS4)
www.nichcy.org
us:
nichcy@aed.org
1.800.695.0285
(V/TTY)

Children with Down syndrome may have a tendency
to become obese as they grow older. Besides having
negative social implications, this weight gain threatens
these individuals’ health and longevity. A supervised diet
and exercise program may help reduce this problem.
Shortly after a diagnosis of Down syndrome is con-
firmed, parents should be encouraged to enroll their child
in an infant development/early intervention program.
These programs offer parents special instruction in teach-
ing their child language, cognitive, self-help, and social
skills, and specific exercises for gross and fine motor
development. Research has shown that stimulation during
early developmental stages improves a child’s chances of
developing to his or her fullest potential. Continuing
education, positive public attitudes, and a stimulating
home environment have also been found to promote the
child’soveralldevelopment.
Just as in the normal population, there is a wide
variation in mental abilities, behavior, and develop-
mental progress in individuals with Down syn-
drome. Their level of retardation may range
from mild to severe, with the majority
functioning in the mild to moderate
range. Due to these individual differences,
it is impossible to predict future achieve-
ments of children with Down syndrome.
Because of the range of ability in
children with Down syndrome, it is
important for families and all members of
the school’s education team to place few limita-
tions on potential capabilities. It may be effective
to emphasize concrete concepts rather than abstract
ideas. Teaching tasks in a step-by-step manner with
frequent reinforcement and consistent feedback has
proven successful. Improved public acceptance of persons
with disabilities, along with increased opportunities for
adults with disabilities to live and work independently in
the community, have expanded goals for individuals with
Down syndrome. Independent Living Centers, group-
NICHCY: 1.800.695.0285 3 Fact Sheet on Down Syndrome (FS4)
These NICHCY
topics important to
disability.
Parenting a Child
with Special Needs
Your Child’s
Evaluation
Education Services
IEP
contacting us.
Research has
shown that stimulation
during early
developmental stages
improves a child’s
chances of developing
to his or her fullest
potential.

4
FS4, January 2004
shared and supervised apartments, and support services in the
community have proven to be important resources for persons
withdisabilities.
Cunningham, C. (1999). Understanding Down syndrome: An
introduction for parents (2nd
ed.). Cambridge, MA: Brookline.
(Phone: 800.666.2665. Web: www.brooklinebooks.com)
Pueschel, S.M. (Ed.). (2001). A parent’s guide to Down syndrome:
Toward a brighter future (2nd
ed.). Baltimore, MD: Paul H. Brookes.
(Phone: 800.638.3775. Web: www.brookespublishing.com)
Unruh, J.F. (1994). Down syndrome: Successful parenting of
children with Down syndrome. Eugene, OR: Fern Ridge Press.
(Phone: 800.816.5679. Web: www.fernridgepress.com/)
Woodbine House (Phone: 800.843.7323, Web:
www.woodbinehouse.com) publishes a series on Down syndrome,
including:
• Babies with Down syndrome: A new parent’s guide
• Differences in common: Straight talk about mental retardation,
Down syndrome, and life
• Down syndrome: The first 18 months (DVD or Video)
• Early Communication skills in children with Down syndrome:
A guide for parents and professionals
• Fine motor skills in children with Down syndrome
• Gross motor skills in children with Down syndrome
• Medical and surgical care for children with Down syndrome:
A guide for parents
• Teaching reading to children with Down syndrome
National Down Syndrome Congress
1370 Center Drive, Suite 102
Atlanta, GA 30338
770.604.9500; 800.232.6372
info@ndsccenter.org
www.ndsccenter.org
National Down Syndrome Society
666 Broadway
New York, NY 10012
212.460.9330; 800.221.4602
info@ndss.org
ndss.org
The Arc of the United States
1010 Wayne Avenue, Suite 650
Silver Springs, MD 20910
301.565.3842
info@thearc.org
www.thearc.org

4 JJJJJennifer’ennifer’ennifer’ennifer’ennifer’s Ss Ss Ss Ss Storytorytorytorytory 4
Jen was born 11 weeks early and
weighed only 2½ pounds. The doctors
were surprised to see what a strong,
wiggly girl she was. But when Jen was
just a few days old, she stopped
breathing and was put on a ventilator.
After 24 hours she was able to breathe
on her own again. The doctors did a
lot of tests to find out what had
happened, but they couldn’t find
anything wrong. The rest of Jen’s time
in the hospital was quiet, and after
two months she was able to go home.
Everyone thought she would be just
fine.
At home, Jen’s mom noticed that
Jen was really sloppy when she drank
from her bottle. As the months went
by, Jen’s mom noticed other things she
didn’t remember seeing with Jen’s
older brother. At six months, Jen
didn’t hold her head up straight. She
cried a lot and would go stiff with rage.
When Jen went back for her six-month
checkup, the doctor was concerned by
what he saw and what Jen’s mom told
him. He suggested that Jen’s mom take
the little girl to a doctor who could
look closely at Jen’s development. Jen’s
mom took her to a developmental
specialist who finally put a name to all
the little things that hadn’t seemed
right with Jen—cerebral palsy.
4 What is CP?What is CP?What is CP?What is CP?What is CP? 4
Cerebral palsy—also known as CP—
is a condition caused by injury to the
parts of the brain that control our
ability to use our muscles and bodies.
Cerebral means having to do with the
brain. Palsy means weakness or prob-
lems with using the muscles. Often the
injury happens before birth, sometimes
during delivery, or, like Jen, soon after
being born. CP can be mild, moderate,
or severe. Mild CP may mean a child is
clumsy. Moderate CP may mean the
child walks with a limp. He or she may
need a special leg brace or a cane.
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
CerebrCerebrCerebrCerebrCerebral Pal Pal Pal Pal PalsyalsyalsyalsyalsyCerebrCerebrCerebrCerebrCerebral Pal Pal Pal Pal Palsyalsyalsyalsyalsy

NICHCY: 1.800.695.0285 2 Fact Sheet on Cerebral Palsy (FS2)
More severe CP can affect all parts of a child’s
physical abilities. A child with moderate or severe CP
may have to use a wheelchair and other special
equipment. Sometimes children with CP can also
have learning problems, problems with hearing or
seeing (called sensory problems), or mental retardation.
Usually, the greater the injury to the brain, the more
severe the CP. However, CP doesn’t get worse over
time, and most children with CP have a normal life
span.
4 How Common is CP?How Common is CP?How Common is CP?How Common is CP?How Common is CP? 4
About 500,000 people in America have some
form of CP. Each year 8,000 infants and nearly
1,500 preschool-age children are diagnosed with
CP.
4 What AWhat AWhat AWhat AWhat Are tre tre tre tre the She She She She Signs of CP?igns of CP?igns of CP?igns of CP?igns of CP? 4
There are three main types of CP:
• Spastic CP is where there is too much muscle
tone or tightness. Movements are stiff, especially in
the legs, arms, and/or back. Children with this
form of CP move their legs awkwardly, turning in
or scissoring their legs as they try to walk. This is
the most common form of CP.
• Athetoid CP (also called dyskinetic CP) can
affect movements of the entire body. Typically, this
form of CP involves slow, uncontrolled body
movements and low muscle tone that makes it
hard for the person to sit straight and walk.
• Mixed CP is a combination of the symptoms
listed above. A child with mixed CP has both high
and low tone muscle. Some muscles are too tight,
and others are too loose, creating a mix of stiffness
and involuntary movements.
More words used to describe the different
types of CP include:
• Diplegia—This means only the legs are af-
fected.
• Hemiplegia—This means one half of the body
(such as the right arm and leg) is affected.
• Quadriplegia—This means both arms and legs
are affected, sometimes including the facial
muscles and torso.
4 What About TWhat About TWhat About TWhat About TWhat About Treatreatreatreatreatmenmenmenmenmenttttt????? 4
With early and ongoing treatment the effects of
CP can be reduced. Many children learn how to get
their bodies to work for them in other ways. For
example, one infant whose CP keeps him from
crawling may be able to get around by rolling from
place to place.
Children younger than three years old can
benefit greatly from early intervention services. Early
intervention is a system of services to support
infants and toddlers with disabilities and their
families. For older children, special education and
related services are available through the public
school to help each child achieve and learn.
Typically, children with CP may need different
kinds of therapy, including:
• Physical therapy (PT), which helps the child
develop stronger muscles such as those in the legs
and trunk. Through PT, the child works on skills
such as walking, sitting, and keeping his or her
balance.
• Occupational therapy (OT), which helps the
child develop fine motor skills such as dressing,
feeding, writing, and other daily living tasks.
• Speech-language pathology (S/L), which helps
the child develop his or her communication skills.
The child may work in particular on speaking,
which may be difficult due to problems with
muscle tone of the tongue and throat.
The child may also find a variety of special
equipment helpful. For example, braces (also
called AFOs) may be used to hold the foot in place
when the child stands or walks. Custom splints
can provide support to help a child use his or her
hands. A variety of therapy equipment and
adapted toys are available to help children play
and have fun while they are working their bodies.
Activities such as swimming or horseback riding
can help strengthen weaker muscles and relax the
tighter ones.
New medical treatments are being developed
all the time. Sometimes surgery, Botox injections,
or other medications can help lessen the effects of
CP, but there is no cure for the condition.

Fact Sheet on Cerebral Palsy (FS2) 3 NICHCY: 1.800.695.0285
4 TTTTTips for Pips for Pips for Pips for Pips for Parenarenarenarenarentststststs 4
u Learn about CP. The more
you know, the more you can
help yourself and your child.
See the list of resources and
organizations at the end of
this publication.
u Love and play with your child. Treat your
son or daughter as you would a child
without disabilities. Take your child
places, read together, have fun.
u Learn from professionals and other par-
ents how to meet your child’s special
needs, but try not to turn your lives into
one round of therapy after another.
u Ask for help from family and friends.
Caring for a child with CP is hard work.
Teach others what to do and give them
plenty of opportunities to practice while
you take a break.
u Keep informed about new treatments and
technologies that may help. New ap-
proaches are constantly being worked on
and can make a huge difference to the
quality of your child’s life. However, be
careful about unproven new “fads.”
u Learn about assistive technology that can
help your child. This may include a simple
communication board to help your child
express needs and desires, or may be as
sophisticated as a computer with special
software.
u Be patient, keep up your hope for im-
provement. Your child, like every child,
has a whole lifetime to learn and grow.
u Work with professionals in early interven-
tion or in your school to develop an IFSP
or an IEP that reflects your child’s needs
and abilities. Be sure to include related
services such as speech-language pathol-
ogy, physical therapy, and occupational
therapy if your child needs these. Don’t
forget about assistive technology either!
4 TTTTTips for Tips for Tips for Tips for Tips for Teacherseacherseacherseacherseachers 4
u Learn more about CP. The resources and
organizations at the end of this publica-
tion will help you.
u This may seem obvious, but sometimes
the “look” of CP can given the mistaken
impression that a child who has CP
cannot learn as much as others. Focus on
the individual child and learn firsthand
what needs and capabilities he or she has.
u Tap into the strategies that teachers of
students with learning disabilities use for
their students. Become knowledgeable
about different learning styles. Then you
can use the approach best suited for a
particular child, based upon that child’s
learning abilities as well as physical
abilities.
u Be inventive. Ask yourself (and others),
“How can I adapt this lesson for this child
to maximize active, hands-on learning?”
u Learn to love assistive technology. Find
experts within and outside your school to
help you. Assistive technology can mean
the difference between independence for
your student or not.
u Always remember, parents are experts, too.
Talk candidly with your student’s parents.
They can tell you a great deal about their
daughter’s or son’s special needs and
abilities.
u Effective teamwork for the child with CP
needs to bring together professionals with
diverse backgrounds and expertise. The
team must combine the knowledge of its
members to plan, implement, and coordi-
nate the child’s services.

FS2, January 2004
4 What About SWhat About SWhat About SWhat About SWhat About Schoolchoolchoolchoolchool????? 4
A child with CP can face many challenges in
school and is likely to need individualized help.
Fortunately, states are responsible for meeting the
educational needs of children with disabilities.
For children up to age three, services are
provided through an early intervention system.
Staff work with the child’s family to develop what
is known as an Individualized Family Services
Plan, or IFSP. The IFSP will describe the child’s
unique needs as well as the services the child will receive
to address those needs. The IFSP will also emphasize the
unique needs of the family, so that parents and other
family members will know how to help their young
child with CP. Early intervention services may be pro-
vided on a sliding-fee basis, meaning that the costs to
the family will depend upon their income.
For school-aged children, including preschoolers,
special education and related services will be provided
through the school system. School staff will work
with the child’s parents to develop an Individualized
Education Program, or IEP. The IEP is similar to an
IFSP in that it describes the child’s unique needs and
the services that have been designed to meet those
needs. Special education and related services, which
can include PT, OT, and speech-language pathology,
are provided at no cost to parents.
In addition to therapy services and special equip-
ment, children with CP may need what is known as
assistive technology. Examples of assistive technology
include:
• Communication devices, which can range from the
simple to the sophisticated. Communication boards,
for example, have pictures, symbols, letters, or words
attached. The child communicates by pointing to or
gazing at the pictures or symbols. Augmentative
communication devices are more sophisticated and
include voice synthesizers that enable the child to
“talk” with others.
• Computer technology, which can range from
electronic toys with special switches to sophisticated
computer programs operated by simple switch pads
or keyboard adaptations.
Geralis, E. (1998). Children with cerebral palsy: A parents’
guide (2nd
ed.). Bethesda, MD: Woodbine House. (Phone:
800.843.7323. Web: www.woodbinehouse.com)
Kelker, K.A., Holt, R. (2000). Family guide to assistive
technology. Cambridge, MA: Brookline Books. (Phone:
800.666.2665. Web: www.brooklinebooks.com)
Miller, F., Bachrach, S.J. (1998). Cerebral palsy: A
complete guide for caregiving. Baltimore, MD: Johns
Hopkins University Press. (Phone: 800.537.5487.
Web: www.press.jhu.edu)
Videos to rent: My Left Foot and Gaby: A True Story.
4 OtOtOtOtOther Wher Wher Wher Wher Web Seb Seb Seb Seb Sitesitesitesitesites 4
www.ninds.nih.gov—site of the National Institute of
Neurological Disorders and Stroke at the National
Institutes of Health
www.dreamms.org—a non-profit information clearing-
house on assistive technology
www.lburkhart.com—ideas and instructions for adapting
toys for use by children with CP
4 OrganizationsOrganizationsOrganizationsOrganizationsOrganizations 4
United Cerebral Palsy Associations, Inc.
1660 L Street, NW, Suite 700, Washington, DC 20036
202.776.0406; 202.973.7197 (TTY); 800.872.5827 (V/TTY)
www.ucp.org
Easter Seals—National Office
230 W. Monroe Street, Suite 1800, Chicago, IL 60606-4802
312.726.6200; 312.726.4258 (TTY); 800.221.6827
www.easter-seals.org
Educational Development and the Office of Special Education Programs of the U.S. Department of Education. The contents of this
document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial
products, or organizations imply endorsement by the U.S. Government. This publication is copyright free. Readers are encouraged to copy
and share it, but please credit the National Dissemination Center for Children with Disabilities (NICHCY).
The Individuals with Disabilities Education Act (IDEA) guides how
early intervention services and special education and related services
are provided to children with disabilities. Under IDEA, cerebral
palsy is considered an “orthopedic impairment,” which is defined as
“. . . a severe orthopedic impairment that adversely affects a
child’s educational performance. The term includes impairments
caused by congenital anomaly (e.g. clubfoot, absence of some
member, etc.), impairments caused by disease (e.g., poliomyelitis,
bone tuberculosis, etc.), and impairments from other causes (e.g.,
cerebral palsy, amputations, and fractures or burns that cause
contractures).” 34 Code of Federal Regulations §300.7(c)(8)

Many terms are used to describe
emotional, behavioral, or mental
disorders. Currently, students with
such conditions are categorized as
having an emotional disturbance,
which is defined under the Individu-
als with Disabilities Education Act
(IDEA) as follows:
“...a condition exhibiting one or
more of the following characteristics
over a long period of time and to a
marked degree that adversely affects a
child's educational performance—
(A) An inability to learn that
cannot be explained by
intellectual, sensory, or health
factors.
(B) An inability to build or
maintain satisfactory
interpersonal relationships
with peers and teachers.
(C) Inappropriate types of
behavior or feelings under
normal circumstances.
(D) A general pervasive mood of
unhappiness or depression.
(E) A tendency to develop
physical symptoms or fears
associated with personal or
school problems.” [Code of
Federal Regulations, Title 34,
§300.7(c)(4)(i)]
As defined by IDEA at
§300.7(c)(4)(ii), emotional distur-
bance includes schizophrenia but
does not apply to children who are
socially maladjusted, unless it is
determined that they have an
emotional disturbance.
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
EEEEEmotmotmotmotmotional Disturional Disturional Disturional Disturional DisturbancebancebancebancebanceEEEEEmotmotmotmotmotional Disturional Disturional Disturional Disturional Disturbancebancebancebancebance

In the 2000-2001 school year, 473,663 children and
youth with emotional disturbance were provided special
education and related services in the public schools
(Twenty-fourth Annual Report to Congress, U.S. Department
of Education, 2002).
The causes of emotional disturbance have not been
adequately determined. Although various factors such as
heredity, brain disorder, diet, stress, and family function-
ing have been suggested as possible causes, research has not
shown any of these factors to be the direct cause of behavior
or emotional problems. Some of the characteristics and
behaviors seen in children who have emotional disturbances
include:
• Hyperactivity (short attention span, impulsiveness);
• Aggression/self-injurious behavior (acting out, fighting);
• Withdrawal (failure to initiate interaction with others, retreat
from exchanges or social interaction, excessive fear or anxiety);
• Immaturity (inappropriate crying, temper tantrums, poor
coping skills); and
• Learning difficulties (academically performing below grade
level).
Children with the most serious emotional
disturbances may exhibit distorted thinking,
excessive anxiety, bizarre motor acts, and
abnormal mood swings. Some are
identified as children who have severe
psychosisorschizophrenia.
Many children who do not have
emotional disturbance may display some
of these same behaviors at various times
during their development. However, when
children have an emotional disturbance, these
behaviors continue over long periods of time.
Their behavior signals that they are not coping with their
environmentorpeers.
NICHCY: 1.800.695.0285 2 Fact Sheet on Emotional Disturbance (FS5)
www.nichcy.org
us:
nichcy@aed.org
1.800.695.0285
(V/TTY)

The educational programs for children with an
emotional disturbance need to include attention to
providing emotional and behavioral support as well as
helping them to master academics, develop social skills,
and increase self-awareness, self-control, and self-esteem.
A large body of research exists regarding methods of
providing students with positive behavioral support (PBS)
in the school environment, so that problem behaviors are
minimized and positive, appropriate behaviors are
fostered. (See the resource list at the end of this publica-
tion for more information on PBS.) It is also important to
know that, within the school setting:
• For a child whose behavior impedes learning
(including the learning of others), the team develop-
ing the child’s Individualized Education Program (IEP)
needs to consider, if appropriate, strategies to address
that behavior, including positive behavioral interven-
tions, strategies, and supports.
• Students eligible for special education services under
the category of emotional disturbance may
have IEPs that include psychological or
counseling services. These are important
related services which are available
under law and are to be provided by
a qualified social worker, psycholo-
gist, guidance counselor, or other
qualified personnel.
• Career education (both vocational
and academic) is also a major part of
secondary education and should be a
part of the transition plan included in
every adolescent’s IEP.
There is growing recognition that families, as well as
their children, need support, respite care, intensive case
management, and a collaborative, multi-agency approach
to services. Many communities are working toward
providing these wrap-around services. There are a growing
number of agencies and organizations actively involved in
establishing support services in the community.
NICHCY: 1.800.695.0285 3 Fact Sheet on Emotional Disturbance (FS5)
These NICHCY
topics important to
disability.
Parenting a Child
with Special Needs
Your Child’s
Evaluation
Education Services
IEP
contacting us.
A large body of
research exists
regarding methods of
providing students
with positive
behavioral support
(PBS) in the school
environment.

4
FS5, January 2004
4 OtOtOtOtOther Consher Consher Consher Consher Consideriderideriderideratatatatationsionsionsionsions 4
Families of children with an emotional disturbance may need
help in understanding their children’s condition and in learning
how to work effectively with them. Parent support groups can be
helpful in this regard. Organizations such as the National Mental
Health Association (NMHA) and the National Alliance for the
Mentally Ill (NAMI) have parent groups in every state. (See
“Organizations.”) Help is also available from psychiatrists,
psychologists, or other mental health professionals in public or
private mental health settings. Children should be provided
services based on their individual needs, and all persons who are
involved with these children should be aware of the care they are
receiving. It is important to coordinate all services between home,
school, and therapeutic community with open communication.
Greene, R.W. (2001). The explosive child: A new approach for
understanding and parenting easily frustrated chronically inflexible
children. New York: Harper Collins. (Phone: 212.207.7000. Web:
www.harpercollins.com/hc/home.asp)
Jordan, D. (2001). A guidebook for parents of children with emo-
tional or behavior disorders (3rd
ed.). Minneapolis, MN: PACER.
(Phone: 888.248.0822. Web: www.pacer.org)
Koplewicz, H.S. (1997). It’s nobody's fault: New hope and help for
difficult children. New York: Three Rivers Press. (To find a local or
online bookseller, go to: www.randomhouse.com/reader_resources/
ordering.html)
Miller, J.A. (1999). The childhood depression sourcebook. New York:
McGraw-Hill. (Phone: 877.833.5524. Web: http://books.mcgraw-
hill.com)
Papolos, D., Papolos, J. (2002). The bipolar child. New York:
Broadway. (To find a local or online bookseller, go to:
www.randomhouse.com/reader_resources/ordering.html)
Wilen, T.E. (1998). Straight talk about psychiatric medications for
kids. New York: Guilford. (Phone: 800.365.7006.
Web: www.guilford.com)
American Academy of Child and Adolescent
Psychiatry, Public Information Office
3615 Wisconsin Ave., NW
Washington, DC 20016-3007
202.966.7300
www.aacap.org
Center on Positive Behavioral Interventions
and Supports
5262 University of Oregon
Eugene, OR 97403-5262
541.346.2505
pbis@oregon.uregon.edu
www.pbis.org
Federation of Families for Children’s Mental
Health, 1101 King Street, Suite 420
Alexandria, VA 22314
703.684.7710
ffcmh@ffcmh.org
www.ffcmh.org
National Alliance for the Mentally Ill (NAMI)
Colonial Place Three, 2107 Wilson Boulevard,
Suite 300, Arlington, VA 22201-3042
703.524.7600; 703.516.7227 (TTY)
800.950.6264
www.nami.org
National Mental Health Association
2001 N. Beauregard St., 12th Floor
Alexandria, VA 22311
703.684.7722; 800.969.6642
800.433.5959 (TTY)
www.nmha.org
National Mental Health Information Center
P.O. Box 42557
800.789.2647;866.889.2647(TTY)
www.mentalhealth.org

The Individuals with Disabilities
Education Act (IDEA), formerly the
Education of the Handicapped Act
(P.L. 94-142), includes “hearing
impairment” and “deafness” as two of
the categories under which children
with disabilities may be eligible for
special education and related services
programming. While the term
“hearing impairment” is often used
generically to describe a wide range of
hearing losses, including deafness, the
regulations for IDEA define hearing
loss and deafness separately.
Hearing impairment is defined by
IDEA as “an impairment in hearing,
whether permanent or fluctuating,
that adversely affects a child’s
educational performance.”
Deafness is defined as “a hearing
impairment that is so severe that the
child is impaired in processing linguis-
tic information through hearing, with
or without amplification.”
Thus, deafness may be viewed as a
condition that prevents an individual
from receiving sound in all or most of
its forms. In contrast, a child with a
hearing loss can generally respond to
auditory stimuli, including speech.
Hearing loss and deafness affect
individuals of all ages and may occur at
any time from infancy through old age.
The U.S. Department of Education
(2002) reports that during the 2000-
2001 school year, 70,767 students aged
6 to 21 (or 1.3% of all students with
disabilities) received special education
services under the category of “hearing
impairment.” However, the number of
children with hearing loss and deaf-
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
DDDDDeafeafeafeafeafnessnessnessnessness
H H H H Hearing Learing Learing Learing Learing Lossossossossoss
DDDDDeafeafeafeafeafnessnessnessnessness
H H H H Hearing Learing Learing Learing Learing Lossossossossoss

ness is undoubtedly higher, since many of these students may
have other disabilities as well and may be served under other
categories.
It is useful to know that sound is measured by its
loudness or intensity (measured in units called
decibels, dB) and its frequency or pitch (measured in
units called hertz, Hz). Impairments in hearing can
occur in either or both areas, and may exist in only
one ear or in both ears. Hearing loss is generally
described as slight, mild, moderate, severe, or
profound, depending upon how well a person can
hear the intensities or frequencies most greatly
associated with speech. Generally, only children whose
hearing loss is greater than 90 decibels (dB) are considered
deaf for the purposes of educational placement.
There are four types of hearing loss. Conductive hearing losses
are caused by diseases or obstructions in the outer or middle ear
(the conduction pathways for sound to reach the inner ear).
Conductive hearing losses usually affect all frequencies of hearing
evenly and do not result in severe losses. A person with a
conductive hearing loss usually is able to use a hearing aid well or
can be helped medically or surgically.
Sensorineural hearing losses result from damage to the
delicate sensory hair cells of the inner ear or the nerves which
supply it. These hearing losses can range from mild to
profound. They often affect the person’s ability to
hear certain frequencies more than others. Thus,
even with amplification to increase the sound
level, a person with a sensorineural hearing
loss may perceive distorted sounds,
sometimes making the successful use of a
hearingaidimpossible.
A mixed hearing loss refers to a
combination of conductive and senso-
rineural loss and means that a problem
occurs in both the outer or middle and the
inner ear. A central hearing loss results from
damage or impairment to the nerves or nuclei of the
central nervous system, either in the pathways to the brain or in
the brain itself.
NICHCY: 1.800.695.0285 2 Fact Sheet on Deafness (FS3)
www.nichcy.org
us:
nichcy@aed.org
1.800.695.0285
(V/TTY)

Hearing loss or deafness does not affect a person’s intellectual
capacity or ability to learn. However, children who are either hard of
hearing or deaf generally require some form of special education
services in order to receive an adequate education. Such services may
include:
• regular speech, language, and auditory training from a specialist;
• amplification systems;
• services of an interpreter for those students who use sign
language;
• favorable seating in the class to facilitate lip reading;
• captioned films/videos;
• assistance of a notetaker, who takes notes for the student with a
hearing loss, so that the student can fully attend to instruction;
• instruction for the teacher and peers in alternate communication
methods, such as sign language; and
• counseling.
Children who are hard of hearing will find it much
more difficult than children who have normal hearing
to learn vocabulary, grammar, word order,
idiomatic expressions, and other aspects of
verbal communication. For children who are
deaf or have severe hearing losses, early,
consistent, and conscious use of visible
communication modes (such as sign language,
fingerspelling, and Cued Speech) and/or
amplification and aural/oral training can help
reduce this language delay. By age four or five, most
children who are deaf are enrolled in school on a full-
day basis and do special work on communication and
language development. It is important for teachers and audiologists to
work together to teach the child to use his or her residual hearing to
the maximum extent possible, even if the preferred means of
communication is manual. Since the great majority of deaf children
(over 90%) are born to hearing parents, programs should provide
instruction for parents on implications of deafness within the family.
NICHCY: 1.800.695.0285 3 Fact Sheet on Deafness (FS3)
These NICHCY
topics important to
disability.
Parenting a Child
with Special Needs
Your Child’s
Evaluation
Education Services
IEP
contacting us.
Hearing loss or
deafness does not
affect a person’s
intellectual capacity
or ability to learn.

4
FS3, January 2004
People with hearing loss use oral or manual means of
communication or a combination of the two. Oral comm-
unication includes speech, lip reading, and the use of
residual hearing. Manual communication involves signs and
fingerspelling. Total Communication, as a method of
instruction, is a combination of the oral method plus
signing and fingerspelling.
Individuals with hearing loss, including those who are
deaf, now have many helpful devices available to them. Text
telephones (known as TTs, TTYs, or TDDs) enable persons to
type phone messages over the telephone network. The
Telecommunications Relay Service (TRS) makes it possible for
TT users to communicate with virtually anyone (and vice
versa) via telephone. Dial 711 to access all TRSs anywhere in
the United States. The relay service is free.
Luterman, D.M. (2002). When your child is deaf: A guide for
parents (2nd
ed.). Parkton, MD: York Press. (Phone:
800.962.2763. Web: www.yorkpress.com/index.html)
Medwid, D.J., Weston, D.C. (1995). Kid-friendly parenting
with deaf and hard of hearing children: A treasury of fun activities
toward better behavior. Washington, DC: Gallaudet University
Press. (Phone: 800.621.2736; 888.630.9347 (V/TTY).
Web: http://gupress.gallaudet.edu)
Ogden, P.W. (1996). The silent garden: Raising your deaf child
(Rev. ed.). Washington, DC: Gallaudet University Press.
Schwartz, S. (Ed.). (1996). Choices in deafness: A parents’ guide
to communication options (2nd
ed.). Bethesda, MD: Woodbine
House. (Phone: 800.843.7323. Web: www.woodbinehouse.com)
So your child has a hearing loss: Next steps for parents (n.d.).
(Available online at: www.agbell.org/information/
brochures_parent_so.cfm)
Alexander Graham Bell Association
for the Deaf and Hard of Hearing
3417 Volta Place, NW, Washington, DC 20007
202.337.5220; 202.337.5221 (TTY)
info@agbell.org
www.agbell.org
American Society for Deaf Children
P.O. Box 3355, Gettysburg, PA 17325
717.334.7922 (V/TTY); 800.942.2732 (V/TTY)
ASDC1@aol.com
www.deafchildren.org
American Speech-Language-Hearing Association
10801 Rockville Pike, Rockville, MD 20852
301.897.5700 (V/TTY)
800.638.8255 (V/TTY)
www.asha.org
Laurent Clerc National Deaf Education Center
KDES PAS-6, Gallaudet University
800 Florida Avenue N.E.
Washington, DC 20002-3695
202.651.5051 (V/TTY)
Clearinghouse.InfoToGo@gallaudet.edu
http://clerccenter.gallaudet.edu/InfoToGo
National Institute on Deafness and Other
Communication Disorders Information
Clearinghouse
1 Communication Avenue
Bethesda, MD 20892-3456
800.241.1044; 800.241.1055 (TTY)
nidcdinfo@nidcd.nih.gov
www.nidcd.nih.gov/
Self Help for Hard of Hearing People (SHHH)
7910 Woodmont Avenue, Suite 1200
Bethesda, MD 20814
301.657.2248;301.657.2249(TTY)
info@hearingloss.org
www.hearingloss.org

The terms partially sighted, low
vision, legally blind, and totally blind
are used in the educational context to
describe students with visual
impairments. These terms are defined
as follows:
• “Partially sighted” indicates some
type of visual problem has
resulted in a need for special
education;
• “Low vision” generally refers to a
severe visual impairment, not
necessarily limited to distance
vision. Low vision applies to all
individuals with sight who are
unable to read the newspaper at a
normal viewing distance, even
with the aid of eyeglasses or
contact lenses. They use a
combination of vision and other
senses to learn, although they may
require adaptations in lighting, the
size of print, and, sometimes,
braille;
• “Legally blind” indicates that a
person has less than 20/200 vision
in the better eye or a very limited
field of vision (20 degrees at its
widest point); and
• Totally blind students, who learn
via braille or other non-visual
media.
Visual impairment is the
consequence of a functional loss of
vision, rather than the eye disorder
itself. Eye disorders which can lead to
visual impairments can include retinal
degeneration, albinism, cataracts,
glaucoma, muscular problems that
result in visual disturbances, corneal
disorders, diabetic retinopathy,
congenital disorders, and infection.
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
VVVVVisual Iisual Iisual Iisual Iisual ImpampampampampairmenirmenirmenirmenirmentststststsVVVVVisual Iisual Iisual Iisual Iisual Impampampampampairmenirmenirmenirmenirmentststststs

NICHCY: 1.800.695.0285 2 Fact Sheet on Visual Impairments (FS13)
Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!
www.nichcy.org
us:
nichcy@aed.org
1.800.695.0285
(V/TTY)
The rate at which visual impairments occur in
individuals under the age of 18 is 12.2 per 1,000.
Severe visual impairments (legally or totally blind)
occur at a rate of .06 per 1,000.
The effect of visual problems on a child’s
development depends on the severity, type of
loss, age at which the condition appears, and
overall functioning level of the child. Many
children who have multiple disabilities may
also have visual impairments resulting in
motor, cognitive, and/or social developmental
delays.
A young child with visual impairments has little reason
to explore interesting objects in the environment and, thus,
may miss opportunities to have experiences and to learn.
This lack of exploration may continue until learning
becomes motivating or until intervention begins.
Because the child cannot see parents or peers, he or she
may be unable to imitate social behavior or understand
nonverbal cues. Visual disabilities can create obstacles to a
growingchild’sindependence.
Children with visual impairments should
be assessed early to benefit from early
intervention programs, when applicable.
Technology in the form of computers
and low-vision optical and video aids
enable many partially sighted, low
vision, and blind children to participate
in regular class activities. Large print
materials, books on tape, and braille
books are available.

Students with visual impairments may need additional
help with special equipment and modifications in the
regular curriculum to emphasize listening skills, communi-
cation, orientation and mobility, vocation/career options,
and daily living skills. Students with low vision or those
who are legally blind may need help in using their residual
vision more efficiently and in working with special aids
and materials. Students who have visual impairments
combined with other types of disabilities have a greater
need for an interdisciplinary approach and may require
greater emphasis on self care and daily living skills.
American Foundation for the Blind. Search AFB’s Service
Center on the Internet to identify services for blind and
visually impaired persons in the United States and Canada.
Available: www.afb.org/services.asp
Holbrook, M.C. (Ed.). (1996). Children with visual
impairments: A parents' guide. Bethesda, MD: Woodbine.
(Phone: 800.843.7323. Web: www.woodbinehouse.com)
Lewis, S., Allman, C.B. (2000). Seeing eye to eye: An
administrator's guide to students with low vision. New York:
American Foundation for the Blind.
(Phone: 800.232.3044. Web: www.afb.org)
National Eye Institute. (2003, December). Eye
health organizations list. (Available online at:
www.nei.nih.gov/health/organizations.htm)
NICHCY: 1.800.695.0285 3 Fact Sheet on Visual Impairments (FS13)
Things to KnowThings to KnowThings to KnowThings to KnowThings to Know
These NICHCY
topics important to
disability.
Parenting a Child
with Special Needs
Your Child’s
Evaluation
Education Services
IEP
contacting us.
The terms partially
sighted, low vision,
legally blind, and
totally blind are used
in the educational
context to describe
students with visual
impairments.

FS13, January 2004
American Council of the Blind
1155 15th St. N.W., Suite 1004
Washington, D.C. 20005
202.467.5081;800.424.8666
info@acb.org
www.acb.org
American Foundation for the Blind
11 Penn Plaza, Suite 300
New York, NY 10001
800.232.5463 (Hotline)
For publications call: 800.232.3044
afbinfo@afb.net
www.afb.org
Blind Children’s Center
4120 Marathon Street
Los Angeles, CA 90029-0159
323.664.2153;800.222.3566
info@blindchildrenscenter.org
www.blindchildrenscenter.org
National Association for Parents of
the Visually Impaired, Inc.
P.O. Box 317
Watertown, MA 02472-0317
617.972.7441;800.562.6265
napvi@perkins.org
www.napvi.org
National Association for Visually
Handicapped
22 West 21st Street, 6th Floor
New York, NY 10010
212.889.3141
staff@navh.org
www.navh.org
National Braille Association, Inc. (NBA)
3 Townline Circle
Rochester, NY 14623-2513
585.427.8260
nbaoffice@nationalbraille.org
www.nationalbraille.org/
National Braille Press
88 St. Stephen Street
Boston, MA 02115
617.266.6160;888.965.8965
orders@nbp.org
www.nbp.org
National Eye Institute
31 Center Drive
MSC2510
Bethesda, MD 20892-2510
301.496.5248
2020@nei.nih.gov
www.nei.nih.gov
National Federation of the Blind,
Parents Division
1800 Johnson Street
Baltimore, MD 21230
410.659.9314,ext.360
nfb@nfb.org
www.nfb.org/nopbc.htm
National Library Service for the Blind
and Physically Handicapped,
Library of Congress
1291 Taylor Street, N.W.
Washington, D.C. 20011
202.707.5100;202.707.0744(TTY);
800.424.8567
nls@loc.gov
www.loc.gov/nls
Prevent Blindness America
500 E. Remington Road
Schaumburg, IL 60173
847.843.2020;800.331.2020
info@preventblindness.org
www.preventblindness.org
The Foundation Fighting Blindness
(formerly the National Retinitis
Pigmentosa Foundation)
11435 Cronhill Drive
Owings Mills, MD 21117-2220
410.568.0150;410.363.7139(TTY)
888.394.3937;800.683.5551(TTY)
info@blindness.org
www.blindness.org
4

Speech and language disorders refer
to problems in communication and
related areas such as oral motor
function. These delays and disorders
range from simple sound substitu-
tions to the inability to understand or
use language or use the oral-motor
mechanism for functional speech and
feeding. Some causes of speech and
language disorders include hearing
loss, neurological disorders, brain
injury, mental retardation, drug
abuse, physical impairments such as
cleft lip or palate, and vocal abuse or
misuse. Frequently, however, the
cause is unknown.
More than one million of the
students served in the public schools’
special education programs in the
2000-2001 school year were categorized
as having a speech or language
impairment. This estimate does not
include children who have speech/
language problems secondary to other
conditions such as deafness. Language
disorders may be related to other
disabilities such as mental retardation,
autism, or cerebral palsy. It is estimated
thatcommunicationdisorders
(including speech, language, and
hearing disorders) affect one of every
10 people in the United States.
A child’s communication is
considered delayed when the child is
noticeably behind his or her peers in
the acquisition of speech and/or
language skills. Sometimes a child will
have greater receptive (understand-
ing) than expressive (speaking)
language skills, but this is not always
the case.
is the
NICHCY
P.O. Box 1492
1.800.695.0285 (Voice / TTY)
202.884.8200 (Voice / TTY)
nichcy@aed.org
www.nichcy.org
SSSSSpeech Languagepeech Languagepeech Languagepeech Languagepeech Language
IIIIImpampampampampairmenirmenirmenirmenirmentststststs
SSSSSpeech Languagepeech Languagepeech Languagepeech Languagepeech Language
IIIIImpampampampampairmenirmenirmenirmenirmentststststs

NICHCY: 1.800.695.0285 2 Fact Sheet on Speech/Language Disorders (FS11)
Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!Don’t Be Shy!
www.nichcy.org
us:
nichcy@aed.org
1.800.695.0285
(V/TTY)
Speech disorders refer to difficulties producing speech
sounds or problems with voice quality. They might be
characterized by an interruption in the flow or rhythm of
speech, such as stuttering, which is called dysfluency.
Speech disorders may be problems with the way sounds are
formed, called articulation or phonological disorders, or
they may be difficulties with the pitch, volume, or
quality of the voice. There may be a combination of
several problems. People with speech disorders have
trouble using some speech sounds, which can also be
a symptom of a delay. They may say “see” when they
mean “ski” or they may have trouble using other
sounds like “l” or “r.” Listeners may have trouble
understanding what someone with a speech disorder is
trying to say. People with voice disorders may have
trouble with the way their voices sound.
A language disorder is an impairment in the ability to
understand and/or use words in context, both verbally and
nonverbally. Some characteristics of language disorders
include improper use of words and their meanings, inabil-
ity to express ideas, inappropriate grammatical patterns,
reduced vocabulary, and inability to follow directions. One
or a combination of these characteristics may occur in
children who are affected by language learning disabilities
or developmental language delay. Children may hear or see
a word but not be able to understand its meaning. They
may have trouble getting others to understand what they
are trying to communicate.
Becauseallcommunicationdisorders
carry the potential to isolate individuals
from their social and educational
surroundings, it is essential to find
appropriatetimelyintervention.While
many speech and language patterns can
be called “baby talk” and are part of a
young child’s normal development, they

can become problems if they are not outgrown as
expected. In this way an initial delay in speech and
language or an initial speech pattern can become a
disorder that can cause difficulties in learning. Because of
the way the brain develops, it is easier to learn language
and communication skills before the age of 5. When
children have muscular disorders, hearing problems, or
developmental delays, their acquisition of speech,
language, and related skills is often affected.
Speech-language pathologists assist children who have
communication disorders in various ways. They provide
individual therapy for the child; consult with the child’s
teacher about the most effective ways to facilitate the
child’s communication in the class setting; and work
closely with the family to develop goals and techniques for
effective therapy in class and at home. The speech-
language pathologist may assist vocational teachers and
counselors in establishing communication goals related to
the work experiences of students and suggest strategies that
are effective for the important transition from school to
employment and adult life.
Technology can help children whose physical
conditions make communication difficult.
The use of electronic communication
systems allow nonspeaking people and
peoplewithseverephysicaldisabilities
to engage in the give and take of shared
thought.
Vocabulary and concept growth
continues during the years children are
in school. Reading and writing are taught
and, as students get older, the understanding
and use of language becomes more complex.
Communication skills are at the heart of the
education experience. Speech and/or language therapy
may continue throughout a student’s school years either in
the form of direct therapy or on a consultant basis.
NICHCY: 1.800.695.0285 3 Fact Sheet on Speech/Language Disorders (FS11)
Things to KnowThings to KnowThings to KnowThings to KnowThings to Know
These NICHCY
topics important to
disability.
Parenting a Child
with Special Needs
Your Child’s
Evaluation
Education Services
IEP
contacting us.
Because of the way
the brain develops, it is
easier to learn language
and communication skills
before the age of 5.

4
FS11, January 2004
Brice, A. (2001). Children with communication disorders (ERIC Digest
#E617). Arlington, VA: ERIC Clearinghouse on Disabilities and Gifted
Education. (Available online at: http://ericec.org/digests/e617.html)
Charkins, H. (1996). Children with facial differences: A parents' guide.
Bethesda, MD: Woodbine House. (Phone: 800.843.7323.
Cleft Palate Foundation. (1997). For parents of newborn babies with
cleft lip/cleft palate. Chapel Hill, NC: Author.
(Phone: 800.242.5338. Also available online at: www.cleftline.org)
Gruman-Trinker, C. (2001). Your cleft-affected child: The complete
book of information, resources and hope. Alameda, CA: Hunter House.
(Web: www.hunterhouse.com)
Hamaguchi, P.M. (2001). Childhood speech, language, and listening
problems: What every parent should know (2nd
ed.). New York: John
Wiley. (Phone: 800.225.5945. Web: www.wiley.com/)
Alliance for Technology Access
2175 E. Francisco Blvd., Suite L
San Rafael, CA 94901
415.455.4575; 800.455.7970
atainfo@ataccess.org
www.ataccess.org
American Speech-Language-Hearing Association (ASHA)
10801 Rockville Pike, Rockville, MD 20852
301.897.5700 (V/TTY); 800.638.8255
actioncenter@asha.org
www.asha.org
Childhood Apraxia of Speech Association of North America
(CASANA)
123 Eisele Road, Cheswick, PA 15024
412.767.6589
helpdesk@apraxia.org
www.apraxia-kids.org
Cleft Palate Foundation
104 South Estes Drive, Suite 204
Chapel Hill, NC 27514
919.933.9044;800.242.5338
info@cleftline.org
www.cleftline.org
Easter Seals—National Office
230 West Monroe Street, Suite 1800
Chicago, IL 60606
312.726.6200;312.726.4258(TTY);
800.221.6827
info@easter-seals.org
www.easter-seals.org
Learning Disabilities Association of America
(LDA)
4156 Library Road
Pittsburgh, PA 15234-1349
412.341.1515
info@ldaamerica.org
www.ldaamerica.org
Scottish Rite Foundation
Southern Jurisdiction, U.S.A., Inc.
1733 Sixteenth Street, N.W.
202.232.3579.
www.srmason-sj.org/web/index.htm
Trace Research and Development Center
University of Wisconsin- Madison
1550 Engineering Dr.
2107 Engineering Hall
Madison, WI 53706
608.262.6966;608.263.5408(TTY)
info@trace.wisc.edu
www.trace.wisc.edu

Causes and Prevention of Mental
Retardation
What is mental retardation?
The definition used most often in the United States is
from the American Association on Mental Retardation
(AAMR). According to AAMR, mental retardation is a
disability that occurs before age 18. It is characterized by
significant limitations in intellectual functioning and
adaptive behavior as expressed in conceptual, social and
practical adaptive skills. It is diagnosed through the use of
standardized tests of intelligence and adaptive behavior.
Mental retardation is generally thought to be present if an
individual has an IQ test score of approximately 70 or
below and a significant deficit in at least one area of
adaptive behavior (AAMR, 2002).
What are the causes of mental retardation?
Mental retardation can be caused by any condition
that impairs development of the brain before birth, during
birth or in the childhood years. Several hundred causes
have been discovered, but in about one-third of the people
affected, the cause remains unknown. The three major
known causes of mental retardation are Down syndrome,
fetal alcohol syndrome and fragile X syndrome.
The causes can be categorized as follows:
• Genetic conditions - These result from abnormalities
of genes inherited from parents, errors when genes
combine, or from other disorders of the genes caused
during pregnancy by infections, overexposure to x-rays
and other factors. There are many genetic diseases
associated with mental retardation. Some examples
include PKU (phenylketonuria), a single gene disorder.
Due to a missing or defective enzyme, children with
PKU cannot process a part of a protein called
phenylalanine. Without treatment, phenylalanine builds
up in the blood and causes mental retardation. Down
syndrome is an example of a chromosomal disorder.
Chromosomal disorders happen sporadically and are
caused by too many or too few chromosomes, or by a
change in structure of a chromosome. Fragile X
syndrome is a single gene disorder located on the X
chromosome and is the leading inherited cause of
mental retardation.
• Problems during pregnancy - Use of alcohol or drugs
by the pregnant mother can cause mental retardation.
In fact, alcohol is known to be the leading preventable
cause of mental retardation. Recent research has
implicated smoking in increasing the risk of mental
retardation. Other risks include malnutrition, certain
environmental toxins, and illnesses of the mother
during pregnancy, such as toxoplasmosis,
cytomegalovirus, rubella and syphillis.
• Problems at birth - Prematurity and low birth weight
predict serious problems more often than any other
conditions. Difficulties in the birth process such as
temporary oxygen deprivation or birth injuries may
cause mental retardation.
• Problems after birth - Childhood diseases such as
whooping cough, chicken pox, measles, and Hib
disease that may lead to meningitis and encephalitis
can damage the brain, as can injuries such as a blow to
the head or near drowning. Lead, mercury and other
environmental toxins can cause irreparable damage to
the brain and nervous system.
• Poverty and cultural deprivation - Children growing
up in poverty are at higher risk for malnutrition,
childhood diseases, exposure to environmental health
hazards and often receive inadequate health care.
These factors increase the risk of mental retardation.
Also, children in disadvantaged areas may be deprived
of many common cultural and educational experiences
provided to other youngsters. Research suggests that
such under-stimulation can result in irreversible
damage and can serve as a cause of mental retardation.
Can mental retardation be prevented?
During the past 30 years, significant advances in
research have prevented many cases of mental retardation.
For example, every year in the United States, we prevent:
• 250 cases of mental retardation due to phenylketonuria
(PKU) by newborn screening and dietary treatment;
• 1,000 cases of mental retardation due to congenital
hypothyroidism thanks to newborn screening and
thyroid hormone replacement therapy;
• 1,000 cases of mental retardation by use of anti-Rh
immune globulin to prevent Rh disease and severe
jaundice in newborn infants;
• 5,000 cases of mental retardation caused by Hib
diseases by using the Hib vaccine;
• 4,000 cases of mental retardation due to measles
encephalitis thanks to the measles vaccine; and untold
numbers of cases of mental retardation caused by
National Headquarters, 1010 Wayne Ave., Suite 650, Silver Spring, MD 20910, (301) 565-3842, (301) 565-5342 FAX
Web site: www.thearc.org E-mail: info@thearc.org

German measles during pregnancy thanks to rubella
vaccine (Alexander, 1998).
Other interventions have reduced the chance of
mental retardation. Removing lead from the environment
reduces brain damage in children. Preventive interventions
such as child safety seats and bicycle helmets reduce head
trauma. Early intervention programs with high-risk infants
and toddlers have shown positive effects on intellectual
functioning.
Finally, early comprehensive prenatal care and
preventive measures prior to and during pregnancy
increase a woman's chances of preventing mental
retardation. Dietary supplementation with folic acid, taken
before and during pregnancy, reduces the risk of neural
tube defects. Women who have phenylketonuria (PKU)
should be counseled to go on a restricted phenylalanine
diet three months prior to pregnancy to prevent mental
retardation in their baby.
What can a couple do to reduce the
chances of having a baby born with mental
retardation?
The health of a baby can depend on how healthy a
mother is before pregnancy. Ideally, she should obtain a
general health assessment six months before pregnancy
that includes:
• updating immunizations;
• reviewing use of medications;
• reviewing diet and vitamin supplementation,
including folic acid;
• considering genetic counseling; and
• stopping use of alcohol, cigarettes or other
tobacco forms, illegal drugs, and legal drugs not
approved by the doctor.
Prenatal care should begin as soon as she suspects she
is pregnant. During pregnancy, a woman can protect the
developing fetus by:
• getting plenty of rest and sleep;
• eating nutritious meals;
• avoiding alcohol, cigarettes and drugs;
• avoiding people who are sick;
• wearing seat belts in a car; and
• not lifting heavy objects.
When should a couple consider genetic
counseling?
Genetic counseling should be considered if:
• the child may inherit a genetic or chromosomal
disorder because of a specific condition in the
family;
• a previous birth to either parent resulted in a child
with a genetic disorder, unexplained mental
retardation or a birth defect;
• the mother has had two or more miscarriages or a
baby who died in infancy;
• the mother is 35 years of age or over;
• either partner is of a race or ethnic group with a
high incidence of a genetic condition; and
• the partners are blood relatives.
How can children be protected to avoid
childhood causes of mental retardation?
Mental retardation can be prevented during childhood
by knowing the causes and taking steps to keep children
safe and healthy. These steps include:
• Immunizations to protect children from at least six
diseases that can lead to brain damage. These include
measles, mumps, pertussis (whooping cough), Hib
disease, varicella (chicken pox), and pneumococcal
disease.
• Injury prevention to avoid brain damage, such as using
bicycle helmets and safety seats and seat belts in
automobiles; preventing near-drowning; preventing
falls and protecting babies from severe shaking.
• Newborn screening to identify treatable genetic
conditions.
• Reducing the incidence of Reye’s syndrome caused by
giving medicines containing salicylate (aspirin);
instead, using medicines containing acetaminophen
(such as Tylenol) to reduce the brain damage caused by
Reye’s syndrome.
• Reducing exposure to lead, mercury and other toxins in
the environment that are known to cause brain damage.
• Protecting children from household products that are
poisonous.
References
American Association on Mental Retardation. (2002).
Mental Retardation: Definition, Classification, and
Systems of Supports, 10th Edition. Washington, DC.
Alexander, D. (1998). Prevention of Mental Retardation:
Four Decades of Research. Mental Retardation and
Developmental Disabilities Research Reviews. 4: 50-
58.
The Arc of the United States. (2001). Preventing Mental
Retardation: A Guide to the Causes of Mental
Retardation and Strategies for Prevention. Silver
Spring, MD.
http://www.thearc.org/publications/prevention.pdf
Where can I go for more information?
You will find a wide variety of information on The
Arc’s web site: http://www.thearc.org/causes.html and on
the web site of the National Center on Birth Defects and
Developmental Disabilities: http://www.cdc.gov/ncbddd/
The Arc thanks members of the Health Promotion and
Disability Committee, Deborah Cohen, NJ; Joan Arnold,
OH; and Peter Leibert, CA, for editing this fact sheet.
May 2005

Mental Retardation vs. Mental Illness -- What's the Difference?
Mental Retardation Mental Illness
1. Mental retardation* refers to subaverage
intellectual functioning.
1. Mental illnesses are medical conditions that
disrupt a person’s thinking, feeling, mood, ability
to relate to others, and daily functioning. Just as
diabetes is a disorder of the pancreas, mental
illnesses are medical conditions that often result
in a diminished capacity for coping with the
ordinary demands of life. Mental illness has
nothing to do with intelligence.
Serious mental illnesses include major
depression, schizophrenia, bipolar disorder,
obsessive compulsive disorder (OCD), panic
disorder, post traumatic stress disorder (PTSD),
and borderline personality disorder.
2. Mental retardation refers to impairment in social
adaptation.
2. A person with a mental illness may be very
competent socially, but may have a character
disorder or other aberration.
3. National incidence: 3% of the general
population. Ohio incidence: 1.4 to 1.9% of the
general population of Ohio is estimated to have
severe functional limitation due to mental
retardation or other developmental disabilities.
3. Mental disorders fall along a continuum of
severity. Even though mental illness disorders
are widespread in the population, the main
burden of illness is concentrated in a much
smaller proportion — about 6 percent, or 1 in 17
Americans — who suffer from a serious mental
illness. It is estimated that mental illness affects
1 in 5 families in America.
4. Mental retardation is present at birth or occurs
during the period of development.
4. Mental illnesses can affect persons of any
age, race, religion, or income. Mental illnesses
are not the result of personal weakness, lack of
character, or poor upbringing. Mental illnesses
are treatable. Most people diagnosed with a
serious mental illness can experience relief from
their symptoms and manage symptoms by
actively participating in an individual treatment
plan.
5. In mental retardation, some degree of
intellectual impairment can be expected to be
permanent.
5. Individuals with mental illness and their
families receive support and services from
private practice, their local mental health
authority (which may be county-based or
regional) and the Ohio Department of Mental
Health.**
6. A person with mental retardation can be
expected to behave rationally at his/her functional
level.
6. A person with mental illness may vacillate
between normal and irrational behavior.
7. People with mental retardation can also
experience different types of mental illness with
symptoms such as hallucinations or severe
depression, secondary to the condition of mental
retardation.
7. The term mental illness covers a wide variety
of symptoms that may indicate that someone is
in emotional trouble, including: belligerence,
excessive moodiness, suspicion and mistrust, or
poor emotional control.
*Mental retardation is a developmental disability. People with developmental disabilities may experience difficulty in such areas as self-care,
language, mobility, learning, self-direction, independent living or self-sufficiency. Some common developmental disabilities in addition to
mental retardation are epilepsy, autism, cerebral palsy, learning disabilities, and Tourette syndrome.
From the Ohio Public Images Web Site.

What are the Characteristics of FASD?
© 2000-2005 Teresa Kellerman
FAS Community Resource Center
Babies diagnosed with Fetal Alcohol Syndrome (FAS) have the following
physiological characteristics:
• Small birth weight
• Small head circumference
• Small eye openings
• Smooth, wide philtrum
• Thin upper lip
Babies who have some but not all of these characteristics may be diagnosed with
partial Fetal Alcohol Syndrome (pFAS).
Note: Facial characteristics may not be as apparent immediately after birth or
during adolescence or adulthood as they are between the ages of two and ten.
Facial characteristics may not be present at all if the mother did not drink alcohol
during the brief period that the midface was forming - around the 20th day of pregnancy.
Children who were prenatally exposed to alcohol may have significant neurological dysfunction even without the facial
characteristics. Those who have central nervous system damage without the physical symptoms may be diagnosed with
Alcohol Related Neurodevelopmental Disorders (ARND). Together, the diagnoses of FAS, pFAS and ARND comprise the
umbrella term Fetal Alcohol Spectrum Disorders (FASD).
Most infants with FASD are irritable, have trouble sleeping and eating, are sensitive to sensory stimulation, and startle
easily. They may hyperextend their heads or limbs, and can exhibit hypertonia (too much muscle tone) or hypotonia (too
little muscle tone) or both. Some infants may have heart defects or suffer anomalies to the ears, eyes, liver, or joints.
Most children with FAS have developmental delays but some have no delays at all. Some individuals with FASD may have
lower than normal IQ. However, most children with FAS and ARND have normal intelligence and appearance.
The most serious characteristics of FASD are the invisible symptoms of neurological damage that results from prenatal
exposure to alcohol, These symptoms include:
• Attention deficits (with or without hyperactivity)
• Memory deficits
• Difficulty with abstract concepts (math, time, money)
• Poor problem solving skills
• Difficulty learning from consequences
• Poor judgment
• Immature behavior
• Poor impulse control
Note: These symptoms are not behavior problems but are a result of permanent, unchanging damage to the brain (static
encephalopathy) and are not within the child's control.
Adults with FASD have difficulty maintaining successful independence. They have trouble staying in school, keeping jobs,
or sustaining healthy relationships. Without appropriate support services, these individuals have a high risk of
developing secondary disabilities such as mental illness, getting into trouble with the law, abusing alcohol and other
drugs, and unwanted pregnancies. Children and adults with FAS are also quite vulnerable to physical, sexual, and
emotional abuse.
For more information on FASD, visit the FAS Community Resource Center www.fasstar.com/fas

What is Intellectual Disability?
7
 The term ‘intellectual disability’ is a fairly new term that has the same meaning as
mental retardation. You may see both terms used to mean the same thing.
 The term “mental retardation” is the term used in law and public policy to
determine eligibility for state and federal programs, including the Individuals with
Disabilities Education Act—IDEA (2004), Social Security Disability Insurance, and
Medicaid Home and Community Based Waiver.
 Also, the term ‘mental retardation’ is used for citizenship and legal status, civil and criminal
justice, early care and education, training and employment, income support, health care, and
housing and zoning.
 While Ohio still uses the term mental retardation in the Ohio Revised Code,
administrative rules and other places, in 2009, Governor Strickland signed a bill
into law removing the words “Mental Retardation” from the name of the Ohio
Department of Mental Retardation and Developmental Disabilities and from the
titles of other state and county entities, councils, commissions and various funds that
use the term. As the Ohio Department of Developmental Disabilities, S.B. 79
recognized that mental retardation was merely a subset of developmental
disabilities and had taken on an uncomplimentary connotation.

Definition of Intellectual Disability
8
 The American Association on Intellectual and Developmental Disabilities (AAIDD)
defines ‘intellectual disability, as “a disability characterized by significant limitations
both in intellectual functioning and in adaptive behavior, which covers many
everyday social and practical skills. This disability originates before the age of 18’.
 Intellectual functioning — also called intelligence — refers to general mental capacity, such
as learning, reasoning, problem solving, and so on.
 Adaptive behavior - Adaptive Behavior includes the age-appropriate behaviors necessary
for people to live independently and to function safely and appropriately in daily life.
Adaptive behaviors include real life skills such as grooming, dressing, safety, safe food
handling, school rules, ability to work, money management, cleaning, making friends, social
skills, and personal responsibility.
 One criterion to measure intellectual functioning is an IQ test. Generally, an IQ test
score of around 70 or as high as 75 indicates a limitation in intellectual functioning.

9
 Standardized tests can also determine limitations in adaptive
behavior. Adaptive behavior includes three skill types:
 Conceptual skills—includes skills such as language and literacy; money,
time, number concepts and self-direction.
 Social skills— such as interpersonal skills, social responsibility, self-
esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the
ability to follow rules/obey laws and to avoid being victimized.
 Practical skills— including activities of daily living (personal care),
occupational skills, healthcare, travel/transportation, schedules/routines,
safety, use of money, use of the telephone.

10
 On the basis of such many-sided evaluations, professionals can determine whether
an individual has an intellectual disability and can tailor a support plan for each
individual.
 But in defining and assessing intellectual disability, professionals must take
additional factors into account, such as the community environment typical of the
individual’s peers and culture.
 Professionals should also consider language and cultural differences in the way
people communicate, move, and behave.
 Finally, assessments must also assume that limitations in individuals often coexist with
strengths, and that a person’s level of life functioning will improve if appropriate
personalized supports are provided over a sustained period.

What does it Mean to Treat People
with Dignity and Respect?11
 It is important to remember that you may be a person with a
disability, but you are not a “disabled person.” You are, first
and foremost, a person. Not unlike any other person, you have
your own set of strengths and weaknesses.
 Every individual has rights, is capable of learning, working,
and being a contributing member of society.
 People with disabilities should live in a home of their choice,
participate in chosen activities, employment and life-style and
each person deserves to be treated with dignity and respect.

12
 Providers and others who work and interact with individuals with disabilities must
always treat the individual with dignity and respect. A few examples include:
 Speaking to a person directly
 Speaking to individuals in a respectful manner and tone of voice
 Listening to the person, however they communicate
 Getting to know the person as an individual
 Not discussing a person in front of that person as if they are not present
 Not discussing an individual’s personal business in public where others can hear
 Not sharing information about an individual that is private or personal unless
you have permission of the individual to share specific information
 Allowing the individual to do those things independently that they are capable
of doing
 Using a person’s name when speaking to them or about them
 Avoiding derogatory terms when talking about a person – never refer to a
person based on their needs. For example, never call a person a tube feeder, or
a pooper.

13
 Several important points to remember:
 Everyone can learn
 Everyone should have the opportunity to work if they choose
 Everyone should have choice in where they live
 Everyone should be treated with dignity and respect
 People with disabilities can be contributing members of their community
 People with disabilities can make their own decisions
 Providers and others are not in control of a person’s life
 Individuals with disabilities want to have control of their own lives
 Providers and others need to listen to what a person is telling you and learn how
each person communicates
 It is important to listen, support and provide what the individual wants and
needs
 Everyone should have the opportunity to be as independent as possible
 People with disabilities are not ill
 Everyone is a citizen with equal rights, whether or not they have a disability

Remember to Think “People First”
14
 Language is a reflection of how people see each other. That's why the words we use
can hurt. It's also why responsible communicators are now choosing language that
reflects the dignity of people with disabilities-words that put the person first, rather
than the disability. Read on for a short course on using language that empowers.
 Think people first. Say a woman who has a developmental disability rather than a
developmentally disabled woman.
 Avoid words like unfortunate, afflicted, and victim. Try to avoid casting a person with
a disability as a superhuman model of courage. People with disabilities are just people,
not tragic figures or demigods.
 A developmental disability is not a disease. Do not mention symptoms, patient or
treatment, unless the person you're writing about has an illness as well as a disability.
 Use common sense. Avoid terms with obvious negative or judgmental connotations, such as
crippled, deaf and dumb, lame and defective. If you aren't sure how to refer to a
person's condition, ask. And if the disability is not relevant to your story or conversation,
why mention it at all?
 Never refer to a person as confined to a wheelchair. Wheelchairs enable people to
escape confinement. A person with mobility impairment uses a wheelchair.
 Try to describe people without disabilities as typical rather than normal.

Current Philosophy and Best Practices
15
 Some of the key fundamentals in providing services and supports for
individuals with Developmental Disability include:
 Supporting the individual in having control over his/her own life
 Supporting the individual in building friendships and relationships
 Supporting the individual in working and living in their own community
 Assisting the individual establish maintain financial control and stability
 Assuring that each person achieves and maintains an acceptable quality of
life is an important factor in providing services and supports.
 This section of the course will give a brief overview of several principles that will
help providers meet this goal. The more familiar you are with each of these
principles the better you will be able to support each individual. These principles
include self-advocacy, person-centered planning, self-determination, supported
employment and supported living. The chart below shows some of the key
elements of a quality life.

Self-Advocacy
17
 Self-advocacy means advocating on one's own behalf. It is the root of all social
activist movements. The self-advocacy movement was started by and for people
with developmental disabilities because they wanted to be their own advocates
rather than having others, such as professionals, parents and other family members,
and advocates with or without other disabilities, speak about their needs and
desires. As part of the broader disability rights/independent living movement, the
self-advocacy movement is first and foremost a civil rights movement. As with all
social activist movements, self-advocacy started at the grass-roots level where local
leadership was drawn upon to organize groups of people to stand up and speak
with a goal to effect social change. The national self-advocacy organization, Self-
Advocates Becoming Empowered (SABE), has defined self-advocacy in 1991 as the
following:
 [It] is about independent groups of people with disabilities working together for justice by
helping each other take charge of our lives and fight discrimination. It teaches us how to
make decisions and choices that affect our lives so we can be more independent. It also
teaches us about our rights, but along with learning about our rights we learn responsibilities.
The way we learn about advocating for ourselves is by supporting each other and helping
each other gain confidence in ourselves so we can speak out for what we believe in. The
Research and Training Center on Community Living (RTC), The University of Minnesota

Person-Centered Planning
18
 The concept of person-centered planning developed from the work of John O’Brien, Beth
Mount, Marsha Forest, Judith Snow and Jack Pearpoint. They wanted to change the way
families and communities looked at and planned for the futures of persons with disabilities. Up
to this point, programs had been created to serve people with disabilities and then people
were “plugged into” the program where they best fit. Many of these programs did not help
individuals succeed in community environments and did not focus on functional skills.
Traditionally, services, goals and objectives were determined by and controlled by staff and
were based on remediating a person’s deficits. Through person-centered planning the
individual and those closest to him or her control the development of the plan to help the
person live a life in the community similar to the lives of other community members and the
plan focuses on a persons strengths and choices.
 With person-centered planning, the main concept is to develop a plan to meet personal needs,
desires, dreams and choices of individuals, then find or create the services, supports and
budget to make that plan happen. The purpose of the plan is to help the person live the life of
his or her choosing in the environment of choice. Person-centered planning changed the focus
from existing services and systems to focus on the individual and each person’s individual
choices, strengths, dreams and needs. Planning focuses on personal strengths, choices and
dreams rather than on a person’s weaknesses and deficits.

19
 Getting to know someone is a very important part of person-centered planning. The best way
to get to know someone is to spend enough time together doing things, talking, listening, and
watching to figure out how someone chooses to live their life, where someone wants to live, how
they want to spend time each day, who they want to spend time with, and what are their
hopes and dreams for the future. It is also important to figure out the things that get in the way
of those life choices and how to eliminate barriers.
 There have been a number of formal approaches to person–centered planning including
Personal Futures Planning, Making Action Plans or MAPS, PATH or Planning Alternative
Tomorrows with Hope, Essential Lifestyle Planning and Circle of Friends. “All person centered
planning approaches share three basic features:
1. Everyday events and activities in which the individual participates should be the focus
of planning;
2. Family and connections within the community are more important than the services
historically available; and
3. Planning must be done with the individual with the disability and a group of people
who know the person well and are committed to helping the person achieve their
goals.” (Falvey et al.,1994).

20
 Some of the most important features of person-centered planning include:
 Planning must be based on the individual’s informed choices, preferences, desires, needs,
and knowing one’s options
 Being in control of one's own life
 Being accepted by other community members as a member of the community
 Being valued by the community
 Living, working and enjoying recreational opportunities in the community
 Having needed supports available
 Having friends and relationships
 Having financial resources
 Having financial stability
 Holistic planning and support occur
 Forming interdependent relationships and partnerships with others and the community is
important
 Natural supports are identified and used
 Services and supports are provided in a respectful, image enhancing manner
 Nonintrusive delivery of services and supports is essential

21
 When using the person-centered planning approach, the plan results in the
commitment of many people supporting the person in reaching his or her
desired future, not just the “professionals”. The plan is not based on
traditional assessment or evaluation methods but rather on a process
effective for determining each individual’s choices, preferences and desires.
The planning process focuses on building relationships and belonging. To
implement such a plan, methods and resources for supporting choices,
community connections and support, and an agency design that enables
supporting individual’s choices are needed.
 Ohio has come a long way over the past 20 years since person-centered
planning first came to the forefront. Individual budgets, service and support
administration, new funding streams, and choice of providers have all
opened the doors to the person-centered approach.

Self-Determination
22
 Self-determination is a belief that was applied to people,
other than those with disabilities, for many years prior to
being applied to persons with developmental disabilities.
 This belief had roots in the civil rights movements and was
often applied to Native Americans.
 Self-determination is the belief that people can and should
be in charge of their own lives to whatever degree that
person is capable.
 For a person to be self-determining, they may need
supports, opportunities for decision-making and resources to
implement their choices in all aspects of their lives.

23
 The four main principles of self-determination are
freedom, authority, support and responsibility. These
have been defined as follows:
Freedom:
 The ability to make life decisions about where and with
whom one lives and what important things one undertakes
that parallels in every important way the decisions that
those without disabilities make everyday.
 People have the freedom to determine a meaningful life for
themselves with the assistance of an independent facilitator
and their chosen circle of support.

24
Authority:
 The ability to control a targeted amount of public dollars
together and any available private money in order to craft
a life plan that results in the everyday freedoms that all
Americans desire and the expectations that the lives of those
with disabilities will mirror, with appropriate assistance when
necessary, the lives of others in this society.
 People have the authority to develop and control their own
individual support budget within the constraints of the
funding allocation.

25
Support:
 The organization of these resources in ways that are unique
for the individual and address the support needed because
of a disability with a more holistic way of planning and
budgeting that address perennial issues often lost in the
system of traditional long term care: a place to call home,
sustained relationships, community membership and for
adults the production of private income through the world of
business and commerce.
 People set up and control the support they need to have a
meaningful life with the assistance of an independent
broker.

26
Responsibility:
 The commitment for the wise use of public dollars and with
added flexibility in public funding seeking a more cost
effective way to support individuals with disabilities.
 From its very inception Self-Determination challenged the
high cost of “serving” individuals with significant disabilities
with very few discernable outcomes that would be
acceptable to a person without a disability.
 People take responsibility for managing their individual
budget with the assistance of an independent fiscal
intermediary.

27
 Ohio has accomplished a number of goals toward the implementation of self-
determination including:
 the Medicaid Buy-In as a start toward allowing people to work without fear of losing their
health insurance;
 service and support administrators are now responsible for completing functional
assessment, developing individual plans, developing individual budgets and overseeing
the plan implementation;
 Medicaid Waivers have been approved;
 rules have been changed;
 new rules have been developed to help change the system in support of person-centered
planning and self-determination concepts;
 Home and Community Based Services (HCBS) waiver rules support the development of
individual budgets;
 adoption of the Core Indicators;
 and many other changes as well.

Supported Employment
29
 Supported employment has opened the door for many
adults with disabilities to leave sheltered work environments
and become employed in a wide variety of community jobs
with the supports needed to remain successfully employed.
 Community employment programs existed in several counties
in Ohio in the early 1980’s. These eventually evolved into
supported employment programs. Currently, one of the
sources of payment for supported employment comes from
one of Ohio’s Home and Community Based Waivers.

30
 What is Supported Employment?*
 Supported employment facilitates competitive work in integrated work settings
for individuals with the most severe disabilities (i.e. psychiatric, mental
retardation, learning disabilities, traumatic brain injury) for whom competitive
employment has not traditionally occurred, and who, because of the nature and
severity of their disability, need ongoing support services in order to perform
their job. Supported employment provides assistance such as job coaches,
transportation, assistive technology, specialized job training, and individually
tailored supervision.
 Supported employment is a way to move people from dependence on a service
delivery system to independence via competitive employment. Recent studies
indicate that the provision of on-going support services for people with severe
disabilities significantly increases their rates for employment retention.
Supported employment encourages people to work within their communities and
encourages work, social interaction, and integration.
*Excerpted from: U.S. Department of Labor, Office of Disability Employment Policy

31
 Definitions
 A job coach is a person who is hired by the placement agency to
provide specialized on-site training to assist the employee with a
disability in learning and performing the job and adjusting to the work
environment.
 Natural supports are support from supervisors and co-workers, such as
mentoring, friendships, socializing at breaks and/or after work,
providing feedback on job performance, or learning a new skill together
at the invitation of a supervisor or co-workers. These natural supports
are particularly effective because they enhance the social integration
between the employee with a disability and his/her co-workers and
supervisor. In addition, natural supports may be more permanent,
consistently and readily available, thereby facilitating long-term job-
retention.

32
 Basic Components
 Supported employment services should achieve the following outcomes: opportunity to
earn equitable wages and other employment-related benefits, development of new skills,
increased community participation, enhanced self-esteem, increased consumer
empowerment, and quality of life. The types of supported employment services used
depend on the needs of individual consumers.
 The following are the basic components of supported employment:
 Paid Employment -- Wages are a major outcome of supported employment. Work
performed must be compensated with the same benefits and wages as other workers in
similar jobs receive. This includes sick leave, vacation time, health benefits, bonuses,
training opportunities, and other benefits. Employment must be for at least 18 hours
per week.
 Integrated Work Sites -- Integration is one of the essential features of supported
employment. Individuals with disabilities should have the same opportunities to
participate in all activities in which other employees participate and to work alongside
other employees who do not have disabilities.
 Ongoing Support -- A key characteristic which distinguishes supported employment
from other employment programs is the provision of ongoing support for individuals
with severe disabilities to maintain employment.

33
 Supported Employment Models
 Several supported employment models are being used to provide the benefits of work for people with
severe disabilities.
 Individual Placement Model -- A person with a disability is placed in a job in a community business which best suits
his/her abilities and preferences. Training is provided on the job site in job skills and work related behaviors,
including social skills, by a job coach. As the employee gains skills and confidence, the job coach gradually spends
less time at the worksite. Support is never completely removed. The private or public vocational rehabilitation
agency furnishing the job coach is always available to the employer for retraining for new assignments, assisting in
dealing with challenging behaviors, supplying periodic consultations with co-workers and employer, giving
orientation and training for co-workers.
 Enclave Model -- A small group of people with disabilities (generally 5-8) is trained and supervised among
employees who are not disabled at the host company's work site. Persons in the enclave work as a team at a single
work site in a community business or industry. Initial training, supervision, and support are provided by a specially
trained on-site supervisor, who may work for the host company or the placement agency. Another variation of the
enclave approach is called the dispersed enclave. This model is used in service industries (e.g., universities,
restaurants, and hotels). Each person works on a separate job, and the group is dispersed throughout the company.
 Mobile Work Crew -- A small crew of persons with disabilities (up to 6) works as a distinct unit and operates as a
self-contained business that generates employment for their crew members by selling a service. The crew works at
several locations within the community, under the supervision of a job coach. Examples of this type of work might
include janitorial or grounds keeping. People with disabilities work with people who do not have disabilities in a
variety of settings, such as offices and apartment buildings.
 Small Business Model -- Within a small business, there may be up to six employees with disabilities, but not more than
the number of employees without disabilities. The small business operates like any business, generating work and
paying employees from revenues received. The small business is located within the community

34
 Benefits to Employers
 No fee to employer
 Thoroughly screened applicants
 Employees' abilities matched to job requirements
 On-site job training by professionals
 Additional training, as necessary
 Follow-up services for the duration of employment

Supported Living Other Residential
Options35
 Supported Living
Supported Living is a way to assist individuals with mental retardation and
developmental disabilities to live as independently as possible in their own homes in
their own communities, with support from public funds. Most often, people in
supported living arrangements live with family members, with roommates or by
themselves. They may live in an apartment, condo, duplex, single family home or
any other type of housing. Supported living services may be provided in the
individual’s home regardless of the type of home.
An individual may share supported living with up to three other individuals with
disabilities in a supported living arrangement. Service providers chosen by the
individuals sharing services may not be the landlord. Services and supports are
identified on an Individual Service Plan (ISP). An individual selects a supported
living service provider from a list of certified providers.
Supported living “includes the provision of housing, food, clothing, habilitation, staff
support, professional services, and any related support services necessary to ensure
the health, safety, and welfare of the individual receiving the services”.

36
 Capital Housing
The Ohio Department of Developmental Disabilities (ODDD) makes available state
capital assistance (bond) funds to assist local County Boards of DD in purchasing
housing for individuals receiving Supported Living services, or Supported Living
services funded through Home and Community Based waivers. The goal of the
program is to provide housing options in their own communities that allow people
with disabilities to be as fully integrated and independent as possible.
The process for accessing Capital Housing dollars is governed through ODDD
administrative rule. Typically, County Boards of DD establish non-profit housing
corporations to receive the funds, and match them with other funding sources.
Existing homes in the community are then purchased with these dollars for
individuals with developmental disabilities, often with their active involvement.
Capital housing dollars are allocated to counties through an established formula
based on available funds.

37
 Licensed Facilities
There are many homes throughout Ohio that are licensed residential facilities for
person with mental retardation and developmental disabilities, often called group
homes. These homes are funded through waivers and ICFMR funds.
Ohio law requires the licensure of facilities that provide services to two or more
unrelated individuals with DD, unless the individuals are sharing services in a
Supported Living arrangement. In a licensed setting, a specific provider holds the
license to operate the facility for a specific number of individuals at a specific
location. Holding the license means that the provider of the housing is the same as
the provider of the services received by the individuals who live there.
Currently there are over 1,200 licensed facilities housing over 10,000 individuals.
This number of facilities has now been “capped” and will not continue to grow.

38
 Intermediate Care Facility Mentally Retarded (ICFMR)
ICFMR facilities typically serve persons with the most severe disabilities and, often,
multiple disabilities. ICFMR facilities must provide active treatment to individuals
residing there. Active treatment is defined as a program of specialized and generic
training, treatment and health services.
Intermediate Care Facilities for the Mentally Retarded (ICFMR) are funded through
Medicaid dollars and, in Ohio, are licensed by the ODDD, to be operated by a
specific provider at a specific location. The Department of Health (DOH) certifies
the licensed facility as meeting the Federal requirements for funding as an ICFMR.
The provider is responsible for all aspects of care for the individual, including
financial matters, transportation, habilitation, and medical needs.
According to the federal regulations, an ICFMR is primarily for the diagnosis,
treatment, or rehabilitation for people with mental retardation and provides, in a
protected residential setting, ongoing evaluation, planning, 24-hour supervision,
coordination, and integration for health or rehabilitative services to help individuals
function at their greatest ability.

39
Developmental Centers
 Ohio operates ten developmental centers (as of 2010) that are located
throughout the state.
 Approximately 1,660 individuals reside in these facilities.
 All developmental centers are licensed as ICFMR facilities.
 Individuals residing in these facilities typically have severe challenges and
receive comprehensive and intensive services.
 No resident is ever considered permanently placed at a developmental
center.
 In addition to providing habilitation, centers provide extensive outreach
services to county boards and other providers, including case consultation
and staff training.

1
I know there is quality in when…
By Quincy Abbot
October 2004
I know there is quality in Becky’s life when:
- She refuses Saturday lunch with me because she is having lunch with her boyfriend.
- We go for a walk in the local park on a Sunday afternoon and fellow walkers say “Hi,
Becky.”It is someone she knows from attending local church services.
- One of the women on her inclusive bowling team invites her to a meal at her house.
- At the voting place four years ago, she was not listed at her current address (she’d moved
a few months before), and a former neighbor at the desk said “Didn’t you use to live at 25
Main Street?”Becky responded “yes”and was allowed to vote.
- She has work or volunteer jobs in the community where she is valued for her
contribution.
- She has a boyfriend who makes her laugh and who she makes laugh.
- She has Wilbur, a guinea pig, to care for and love.
- She makes needlepoint and pottery for gifts to family and friends.
- She has the funds to buy a second TV for her bedroom, to take a vacation trip to Cape
Cod or to Disneyland, and to belong to CURVES. I must admit that the supplier of last
resort for such funds is often Quincy.
- Her three sisters agree that Becky lives life far closer to her potential than any one of
them.
But quality also exists in more mundane areas.
I know there is quality in Becky’s life when:
- Her apartment and workplace are safe.
- She has good, nutritious food to eat.
- She has regular medical checkups and monitoring.
- She has a stable staff who have known her as an individual for a long time, who trust her
and whom she trusts, and who allow her to experience the risks of ordinary life like the
rest of us.
Relationships These are just a few snapshots of Becky’s life that give me the clues to know that
she leads a quality life. What is the single, most important source of this quality in Becky’s life?
It is long term, enduring relationships with individuals without a disability. In the words of Tom
Nerney: “the single greatest predictor for health and safety risks is the absence”of such
relationships. I would go much further and say positively that the presence of long term,
enduring relationships with family, staff, co-workers and others in the community, not only
minimizes risks, but also contributes to higher levels of quality - self esteem and even self
actualization.

2
Maslov’s Hierarchy of Needs. While pondering the subject of quality of life and how we
measure it for individuals with or without disabilities, my mind naturally went to Maslov’s
Hierarchy of Needs. To refresh your memory these range from the bottom level physiological
needs (hunger, thirst, bodily comforts) through Safety/Security needs, Belongingness and Love
needs, Esteem needs, Cognitive needs, and Aesthetic needs to the top level needs of Self-
actualization and Transcendence. It is interesting that the personal quality indicators that
occurred to me first were higher up the scale, even reaching to self-actualization.
Maslov and People with Disabilities. Fifty years ago, when custodial care in institutions was
the norm, people with disabilities were stuck at the bottom. Their physiological needs and their
safety needs were met and little more; sometimes not even that. As individuals moved into the
community, the tendency was still to focus quality assurance at these two levels. However,
being in the community opened up the opportunity for satisfying the needs of “belonging and
love”and “self-esteem.”Satisfaction based quality assurance tools made a start at this. Tom’s
recommendations will improve upon this.
The Challenge. I commented above that Becky’s sisters believe that she comes the closest of
the four of them to realizing her full potential, i. e. self-actualization. The challenge that I bring
to all of us is to find a way to assure that individuals with disabilities will be supported in
realizing these higher levels of human needs.
Perhaps this starts at the bottom. We must first include the higher levels of needs in our person-
centered planning. We must incorporate the resources to realize these needs in our funding and
then we must find a way to assure that individuals with disabilities have fulfilled those needs.
The quality measures must relate back to this individually determined plan. In Connecticut, I am
part of the Steering Committee for a federal grant to determine a new Level of Need, i.e. a funds
allocation, tool as well as a new Quality Assurance System. Preparing these comments made me
realize that so far we mostly contemplate funding Maslov’s first two levels of need and assure
quality in meeting the first two levels of need. We, in Connecticut, have some more work to
do…and so I assume do the rest of you.
This speech was delivered at a New England Region AAMR conference in 2003. Mr. Abbot is a past president of the
ARC of the United States. His daughter Becky lives in a condominium with supports from a community provider.

Centers for Medicare and Medicaid Services’ Definition
A Closer Look
at the Centers for Medicare and Medicaid Services’
Definition of Person-Centered Planning
Person-centered planning reaches beyond service planning to
help friends and supporters understand an individual’s needs and
preferences and plan for a positive future. It is not a new idea; it
has been around for almost 20 years. The Centers for Medicare
and Medicaid Services (CMS), the federal Medicaid agency, has
highlighted person-centered planning and is promoting its use
through Home and Community Based Services Waivers. CMS
describes person-centered planning this way:
“Person-centered planning is a process, directed by the family or
the individual with long term care needs, intended to identify the
strengths, capacities, preferences, needs and desired outcomes of
the individual. The family or individual directs the family or
person-centered planning process. The process includes
participants freely chosen by the family or individual who are
able to serve as important contributors. The family or participants
in the person-centered planning process enables and assists the
individual to identify and access a personalized mix of paid and
non-paid services and supports that will assist him/her to achieve
personally-defined outcomes in the most inclusive community
setting. The individual identifies planning goals to achieve these
personal outcomes in collaboration with those that the individual
has identified, including medical and professional staff. The
identified personally-defined outcomes and the training supports,
therapies, treatments, and or other services the individual is to
receive to achieve those outcomes becomes part of the plan of
care.”
CMS’ definition of person-centered planning is a good starting
place for individuals, their family members, and supporters to
begin to understand person-centered planning and its benefits.
Person-Centered
Principles
John O’Brien
and Connie Lyle
Community presence:
the sharing of the ordinary
places that define
community life.
Choice: the experience of
autonomy both in small,
everyday matters (e.g.,
what to eat or what to
wear) and in large, life-
defining matters (e.g., with
whom to live or what sort
of work to do).
Competence: the
opportunity to perform
functional and meaningful
activities with whatever
level or type of assistance
is required.
Respect: a valued place
among a network of
people and valued roles in
community life.
Community
participation: the
experience of being part of
a growing network of
personal relationships that
include close friends.

of 4 A Closer Look… (continued)
“Person-centered planning is a process…”
Person-centered planning is not a one-time event. It is an ongoing activity that allows
people who care about an individual to listen, to learn, and to lend support to that
person. The process is interactive and lifelong. While a written plan may be a product of
the planning process, the plan is only as good as the effort that goes into listening to the
individual, learning what is important to and for the individual, and lending time and
energy to support the individual on an everyday basis.
“…directed by the family or the individual…”
In person-centered planning, the person who is to be supported and his or her family
controls the process rather than case managers, agencies, or service providers. It is not an
activity organized by staff to assist in getting the plan of care written. The presence of the
individual and/or their family member(s) at a planning meeting and their participation
in needs assessments or preference inventories, while a good thing, is not person-centered
planning. The individual and his or her family actively direct the process. Many
individuals may find that being at the center of the planning process is difficult at first
because their experiences have not provided them with opportunities to “run the show”
when it comes to expressing how they want their lives to look. Many family members who
have experience in planning for their own daily lives may not feel very skilled at helping
a family member translate needs and preferences into supports and services that are
complicated by rules and regulations, and are sometimes in short supply. Thus case
managers and other providers are essential in helping individuals and families take
leadership roles in directing the planning process.
Like many things that we do in life, person-centered planning gets better with practice.
Initial attempts may feel awkward or even unsuccessful, but time and effort pay off. The
inexperience that we feel in doing this type of planning is the very reason that person-
centered planning is often a “facilitated process”, meaning that the different tools
available to be used in person-centered planning come with instructions and a person
trained in walking us through the process.
“…intended to identify the strengths, capacities, preferences,
needs and desired outcomes of the individual...”
Looking at how an individual can live a life filled with choices, connections, and
contributions requires a shift in our usual thinking away from a deficit and needs based
model. We are so focused on needs, slots and programs that we often do not see
giftedness and strengths. We are not used to asking for and following the directions of the
person and those who know him/her best.

A Closer Look… (continued) Page 3 of 4
“Traditional forms of planning are based on the ideal of the developmental
model…emphasizing the deficits and needs of people, overwhelming people with
endless program goals and objectives, and assigning responsibility for decision-
making to professionals. Traditional planning often reinforces the status quo of
organizations by focusing solely on accomplishments that are possible within existing
programs and structures” (John O’Brien and Connie Lyle O’Brien). Person-centered
planning helps us to focus on a person and in so doing make room for a new way of
thinking that makes us listen and learn about the abilities of individuals. After
learning how a person wants to live, we can then develop an understanding of how
the person’s disabilities challenge that vision, and work together to identify and
provide needed supports.
“…The process includes participants freely chosen by the family or individual
who are able to serve as important contributors...”
Person-centered planning encourages the participation of family, friends,
professionals and community members in the process of listening to and discovering
the goals, preferences, gifts, and potential contributions of the individual. There is no
set number of people who must be part of a person-centered planning team.
However, since helping an individual become better connected to his or her
community is a key part of person -centered planning, those who know and care
about the person are encouraged to enroll and lend their support, resources,
creativity, and problem solving skills. It is not just the writing of a plan, but also the
means to make it happen, that is critical to successful planning.
“…The family or participants in the person-centered planning process
enables and assists the individual to identify and access a personalized mix
of paid and non-paid services and supports that will assist him/her to achieve
personally-defined outcomes in the most inclusive community setting...”
Successful person-centered planning is directed at a larger picture-- exploring and
defining how an individual wants his or her life to be. While it may include Medicaid
waiver and/or other publicly funded services it is more comprehensive and holistic
than just service planning. The process can begin at any time in an individual’s life,
and, because it is a process, it reflects changes as the individual’s experiences change.
CMS rightly draws the connection to the wider community where natural supports
exist for all of us.

A Closer Look… continued Page 4 0f 4
“…The individual identifies planning goals to achieve these personal outcomes…”
Perhaps the reason that person-centered planning can be such a natural fit with
service planning is that they are both goal oriented processes. The major difference
with person-centered planning is that the outcomes of the plan are defined by the
individual and those who know and love him or her best. While goals established
through the person-centered planning process may include the development of skills,
the identification of those skills is driven by what the individual says he or she wants to
accomplish.
“…in collaboration with those that the individual has identified,
including medical and professional staff…”
CMS points out that the selection of the members of the planning team is based on
whom the individual wants. One of the major problems of our current community
based services is that they do not support individuals in making meaningful community
connections. As a result, many individuals who do not have family members also do not
have friends and community relationships to support them in this planning process.
While this may make the challenge greater it also argues for the importance of person-
centered planning.
“…The identified personally-defined outcomes and the training supports,
therapies, treatments, and or other services the individual is to receive to
achieve those outcomes becomes part of the plan of care.”
Life planning and service planning come together in person-centered planning.
Focusing on the “person” in person-centered planning ensures that the individual, his
or her family, and other supporters move beyond program planning for the
individual and look at the whole picture of the individual’s life. Goals, objectives,
therapies, treatments, and other services become means to an end, a present and a
future defined by the individual and those who know him or her best. As one self-
advocate sums it up, “My parents always had a dream for my brothers and sisters
for when they grew up, but nobody had a dream for me, so I never had a dream
for myself. You can never have a good life if nobody ever has a dream for you,
unless you learn to have a dream for yourself” (Connie Martinez).
The Partnership for People with Disabilities is a university center for excellence in developmental disabilities at Virginia Commonwealth University. VCU
is an equal opportunity/affirmative action institution providing access to education and employment without regards to age, race, color, national origin, gender,
religion, sexual orientation, veteran’s status, political affiliation or disability. If alternative formats of this document are needed, please contact the Partnership for
People with Disabilities at 804/ 828-3876 or 800/ 828-1120 (TDD Relay). Support for this initiative was provided through a contract with the Virginia Department of
Medical Assistance Services (DMAS) with funding from the Centers for Medicare and Medicaid Services. No copies or reproductions, electronic or otherwise, in
whole or in part, of the following materials may be made without the expressed written permission of DMAS. This document was developed under Grant No. P-
91599/3 from the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services. However, the contents herein do not necessarily
represent the policy of the U.S. Department of Health and Human Services, and you should not infer endorsement by the Federal government. Please include this
disclaimer whenever copying or using all or any part of this document in dissemination activities.

What can person-
centered planning
do for you?
It can help you discover
and share
your goals
for a better
or different
life.
Renewed Interest
Person-centered planning is
a process for learning how a
person wants to live and
what is important to him or
her in everyday life. Person-
centered planning:
♦ looks to the future and
helps the individual plan
for positive outcomes.
♦ puts the person, his or her
gifts, talents, goals,
preferences, needs, and
choices, in the center of the
planning process.
♦ helps people find and use
their voices to state what is
truly important to and for
them.
♦ requires really listening to
the person and the people
who know the individual
best, and translating a
vision for a better or
different life into action
plans.
♦ enlists the support of family,
friends, and professionals to
follow through on those
action plans and journey
with the person to a life
enriched by community
connections and
opportunities to contribute
and receive support.
Person-centered planning is
not a new idea. It has been
around for almost 20 years.
Facilitators use an assortment
of tools to introduce person-
centered planning to
individuals with disabilities and
their families. The tools help
individuals and their
supporters understand the
process and desired outcomes.
WHY THE RENEWED
INTEREST IN PERSON-
CENTERED PLANNING?
♦ The basic idea of person-
centered planning--
planning with and for a
person-- makes good sense.
♦ Reports have shown that
person-centered planning
assists individuals and their
families as they seek to
develop ordinary lives and
connects people to their
communities.
♦ With the growing national
emphasis on consumer-
directed services with
Medicaid funding, the
Centers for Medicare and
Medicaid Services (CMS),
the federal Medicaid
agency, has highlighted
person-centered planning
as a promising practice and
is promoting
its use.
It can
help you
make
important
choices.
It can help
you find people in your
community to support you.
It can help you get
everyone singing off the
same page, your page!

Person-Centered Planning…Renewed Interest Page 2 of 2
SOME TOOLS OF PERSON-CENTERED PLANNING
ESSENTIAL LIFESTYLE PLANNING (ELP)
♦ Developed by Michael Smull.
♦ ELP is a guided process for learning how someone
wants to live and for developing a plan to help
make it happen.
♦ The process has 5 steps (listen, understand, plan,
implement, and assess).
♦ During the process, people who care about the
individual listen to learn what is important to and
for the individual.
♦“…a practical down to earth approach to get a
written document that contains what is important to
an individual: likes and dislikes, daily routines and
rituals, what makes sense and doesn’t, etc. It ends up
as a useful guide for anyone who needs to know
about the person” (A Good ELP is a Work in
Progress, Molly Drummond’s mother).
PATH
♦ Developed by Marsha Forest, Jack Pearpoint, and
John O’Brien.
♦ the
/her dreams.
♦
ey want their future to be - identify their
ards
desirable
PATH is a creative planning tool that starts with
end in mind and focuses the person with whom
planning is being done on naming his
The facilitated process has eight steps
1. Touch the dream - get people to explore images
of how th
purpose
2. Sense the goal - get the group to look backw
from the future describe that positive
future as if it had already happened
Describe the present and3. Ground it in the now -
explore how that feels
eds to be
ge?
f things will have to be done to realize the
8. Commit to the first step
4. Identify people to enroll - Who ne
involved to make change possible?
5. Recognize ways to build strength - How can we
improve our skills, our relationships, our knowled
6. Chart action for the next few months - What
kinds o
goal?
7. Pl n t e next mo th's wa h n ork
PERSONAL FUTURES PLANNING
♦Developed by Beth Mount.
♦Personal Futures Planning is a facilitated
that seeks to discover capacities, identify
opportunities in the local community, and develop
service supports that are responsive
process
to the unique
interests and needs of individuals.
♦The process has a series of 6 tasks.
Task 1: Getting to know you (relationship map)
Task 2: Finding capacities in people
Task 3: Finding capacities in community life (the
community building map)
Task 4: Creating a vision for the future (the futures
map)
Task 5: Supporting people over time to take act
and try new th
ion
ings (follow along meetings and
action plans)
Task 6: ORGANIZATIONAL CHANGE: Constructive
system supports (designing platforms for change)
For more information about person-
centered planning tools or upcoming
training opportunities, contact:
Eileen Hammar
Partnership for People with Disabilities
at Virginia Commonwealth University
804-827-0202 (voice) 804-828-0042 (fax)
or email: eghammar@vcu.edu
This information and the training events are
sponsored by the Partnership for People with
Disabilities at VCU through a contract with the
Department of Medical Assistance Services with
funding from the Centers for Medicare and
Medicaid Services under the Real Choice Systems
Change grant # P91599/3. VCU is an equal
opportunity/affirmative action institution providing
access to education and employment without regard
to age, race, color, national origin, gender, religion,
sexual orientation, veteran’s status, political affiliation,
or disability.

Guiding Principles*
Based on current trends and philosophies in the field of developmental disabilities, the
following guiding principles should be considered when assisting an individual in planning
his or her life:
Control of One's Own Life
Opportunities to become self-determined
Informed choice making
Individual is aware of available options
Select own lifestyle
Control in major life decisions as well as everyday matters
Circle of support to assist in decision and choice making when needed and
desired by the individual
Choice in where to live and with whom
Opportunities for home ownership
Choice in where/whether to work, doing what
Choice in recreational and leisure pursuits
Hopes and dreams for the future
Opportunities for growth and learning
Choice in religious and cultural beliefs and practices
Community
Community and neighborhood connections
Part of the mainstream of community life
Community presence and participation
Accepted and respected by community members
Development of friendships and relationships
Valued roles
Interdependence
Sense of belonging
Full community inclusion
Contributes to community
Finances
Financial stability
Fund people, not programs or structures
Control of own finances/individual budgets

Supports
Individual chooses who provides his or her supports
Support in maintaining health and safety
Supports to participate in chosen lifestyle
Supports follow individual - not agency tied
Continuity of supports over time and settings
Family ties
Rights and Responsibilities
Support in accepting and meeting responsibilities
Individual knows and exercises their rights
Individual is free from abuse and neglect
Individual has privacy
Individual has health care
Individual is satisfied with their services and supports
* from ODMR/DD Quality Enhancement: Determining if Services and Supports Uphold Individually Chosen Lifestyles

Circle of Support
The concept of the ‘circle of support’ was developed in Canada based on the needs of an individual
with disabilities who could not live the life of her choosing without supports. With the type of support
available through a ’circle of support’ a person can take more control of his or her own life.
The circle of support can be a very powerful tool to help a person achieve personal goals and the
lifestyle they could not otherwise accomplish. The circle is typically made up of friends, family and
other community members who care about the individual and who the individual chooses to invite into
his or her circle. The circle is not made up of paid staff.
A ‘circle of support’ is a group of people who care about an individual and are willing to meet and
assist the individual in a variety of ways to establish and meet their goals in life. This is an ongoing
process – not just a one-time event. As the person grows, changes and meets some or all of their
goals and choices, new direction can be taken and new goals set. The person who the circle is
formed to assist is always in charge of the group, the goals set and the process to accomplish those
goals.
One member of the group generally becomes the group facilitator to help keep meetings focused and
running smoothly toward the person’s goals and desires.
All members of the group commonly benefit from the relationships formed while assisting the focus
person become more independent and live a fulfilling life.

NRC FACT SHEET:
SUMMARY OF SELF-DETERMINATION
What Self-Determination Is and What it Is Not
• Self-Determination is NOT a model or a program with a predetermined menu of available services and a set way
of delivering them.
• Self-Determination IS a process that differs from person to person according to what each individual determines
is necessary and desirable to create a satisfying and personally meaningful life. Persons with disabilities no
longer have to receive services as determined by the traditional model. They are free to order off the menu,
including those services they desire to be provided in ways that meet their needs.
• Self-Determination is both person-centered and person-directed. It acknowledges the rights of people with
disabilities to take charge of and responsibility for their lives. In Self-Determination, the individual, not the
service system, decides where he or she will live, and with whom; what type of services he or she requires, and
who will provide them; how he or she will spend his or her time, which may include the type of vocational or
educational opportunities he or she wishes to engage in, and how he or she will relate to the community, which
may include joining in community events, taking part in civic groups, and developing and maintaining
relationships with others in the community.
The Principles of Self-Determination
• Freedom – The ability for an individual together with freely chosen family and friends to plan a life with
necessary support rather than purchase a program.
• Authority – The ability for a person with a disability (with a social support network or circle if needed) to control
a certain sum of dollars in order to purchase services.
• Autonomy – The arranging of resources and personnel–both formal and informal-that will assist an individual
with a disability to live a life in the community rich in community affiliations.
• Responsibility – The acceptance of a valued role in a person’s community through competitive employment,
organizational affiliations, spiritual development, and general caring of others in the community, as well as
accountability for spending public dollars in ways that are life-enhancing for persons with disabilities.
(From: Thomas Nerney and Donald Shumway, Beyond Managed Care: Self-Determination for Persons with Disabilities,
September, 1996).
Values Supported by Self-Determination
Respect – Self-Determination, by its nature, recognizes that persons with disabilities are valuable,
capable persons who deserve to be treated with respect. Respect is more than politeness and paying lip
service. It is acknowledging the individual’s value as a person, seeing his or her strengths and abilities,
granting him or her the same consideration we each desire, and holding him and her in esteem.
Choice – Choice is central to Self-Determination. Many times people with disabilities have very limited
choices. They often cannot choose very important aspects of their lives, such as where they live, with
whom, how they will spend their time and their money, and sometimes even what they eat. At other
times, selections are limited. For instance, individuals may be able to choose who their roommate will
be, but not whether or not they will have one. True choice is being able to pick from the same wide
variety of lifestyles, goals, and individual preferences most people enjoy.

Ownership – Self-Determination not only supports persons with disabilities to have more choices in
their lives, but ownership of their lives. Ownership implies more than just decision-making. It means
that the individual is the final and total authority–the boss. While most people are supported in the
decision-making process by a circle of support, Self-Determination gives the person the final say.
Ownership allows him or her control over his or her life and services. He or she may hire, manage, and
if necessary, fire those who provide services. It also gives him or her control over the management of
his or her financial affairs. Ownership also means that the individual accepts the responsibility for his or
her actions and decisions, including spending public monies conservatively.
Support – Support is a keystone to making Self-Determination work. Most people have some type of
support network in their lives that they turn to when they must make an important decision or take a
step forward in their lives. Persons with disabilities are no different. However, before Self-
Determination, those persons who helped establish goals and devise plans were mostly paid workers
who in many instances were assigned rather than chosen. In Self-Determination the individual selects
and invites each member of his or her circle of support. They can be family members, friends, people
from the community–anyone that the person desires. Most importantly, they are people with whom the
individual has or wishes to build a trusting relationship.
Opportunity – Many persons with disabilities have had only limited opportunities to experience many
aspects of life. Self-Determination expands those opportunities allowing and encouraging individuals to
explore the possibilities that are present in their communities. Since they are able to spend their funds
in ways that they now choose, they are able to take part in events and activities that previously were
unavailable. When someone has had limited experience, it may be difficult for others to allow him or
her to take risks. However, opportunity also includes the ability to take risks, to make mistakes, and to
grow from them.
Self-Determination Calls for a Systems Shift
If Self-Determination is going to be successful, it requires that those who supply services and fund them make certain
changes in both the way they think about persons with disabilities and the way they serve them. Without a shift in the
service system, no philosophy can truly support persons with disabilities to become self-determining individuals. In
order for Self-Determination to happen, the system must shift:
• From seeing persons with disabilities as having limitations that prevent them from participating fully in life to
seeing them as valuable citizens who have many talents, strengths, and abilities to contribute to their
communities.
• From seeing persons with disabilities as service recipients to seeing them as individuals with rights and
entitlements.
• From providing agency-controlled services to supporting person-directed services.
• From systemic and agency control of financial resources to individual control.
• From control to empowerment.
A Final Thought
Self-Determination is what life is all about. Without it, you might be alive, but you wouldn’t
be living–you would just be existing. (M. Kennedy, Self-Determination and Trust: My Experiences and
Thoughts, In Sands Wehmeyer, Self-Determination Across the Life Span, 1996, p. 48).
Prepared by Michael Kennedy Lori Lewin, Staff Associates
National Resource Center on Supported Living and Choice
Center on Human Policy
Syracuse University
Reprinted with permission of the Center on Human Policy 12-2008

Supported Living Per Ohio Revised Code 5126.01
“Supported living” means services provided for as long as twenty-four hours a day to an individual with
mental retardation or other developmental disability through any public or private resources, including
moneys from the individual, that enhance the individual’s reputation in community life and advance the
individual’s quality of life by doing the following:
(a) Providing the support necessary to enable an individual to live in a residence of the individual’s
choice, with any number of individuals who are not disabled, or with not more than three individuals
with mental retardation and developmental disabilities unless the individuals are related by blood or
marriage;
(b) Encouraging the individual’s participation in the community;
(c) Promoting the individual’s rights and autonomy;
(d) Assisting the individual in acquiring, retaining, and improving the skills and competence necessary
to live successfully in the individual’s residence.
(2) “Supported living” includes the provision of all of the following:
(a) Housing, food, clothing, habilitation, staff support, professional services, and any related support
services necessary to ensure the health, safety, and welfare of the individual receiving the services;
(b) A combination of lifelong or extended-duration supervision, training, and other services essential to
daily living, including assessment and evaluation and assistance with the cost of training materials,
transportation, fees, and supplies;
(c) Personal care services and homemaker services;
(d) Household maintenance that does not include modifications to the physical structure of the
residence;
(e) Respite care services;
(f) Program management, as described in section 5126.14 of the Revised Code.

Individual Planning
41
 Individuals with developmental disabilities often receive services from a
wide variety of service providers. In the past, each provider of services
developed an individual plan that contained the services and supports that
they or their agency would provide. Staff from the varying agencies often
attended each other’s team meetings and attempted to coordinate services,
sometimes very successfully and other times, not so successfully. Having more
than one plan often led to duplication of services, services that conflicted,
and service needs that were not met at all.
 With the onset of service and support administration came the requirement
for a single point of contact. This person has the overall responsibility to
focus on the individual, develop one coordinated plan rather than multiple,
discordant plans, and assure the plan is carried out in accordance with all
applicable rules and best practices. Service and support administration also
assures that quality assurance reviews are carried out and the results of
those reviews are incorporated into the individual’s plan and services.

42
 One person now has the responsibility for overseeing and coordinating services, supports and
needs of an individual. This person also has the responsibility for developing one plan thereby
assuring comprehensive, coordinated planning and service delivery for and with each
individual. That responsible person is the service and support administrator. The service and
support administrator can have any assigned job title. Some examples are case manager,
case coordinator, service coordinator, service support specialist and many other titles.
County boards are required to provide service and support administration to any individual,
regardless of age, who is applying for or enrolled in an HCBS waiver; any individual three
years of age or older who is eligible for county board services, and requests, or a person on
the individual’s behalf requests service and support administration; and any individual
residing in an ICF/MR is eligible for service and support administration related to moving the
individual from the ICF/MR to a non-ICF/MR community setting. County boards may provide
service and support administration to any other individuals who are eligible for county board
services. Individuals with a sole diagnosis of mental illness are not eligible for county board
services.
Each individual who receives services and support administration must have a service and
support administrator who is the single point of accountability. This means that an SSA is
identified who is responsible to an individual for the development, effective implementation
and coordination of his or her ISP process.

Individual Plan Development
Requirements43
 Service and support administrators are responsible for developing and revising the
individual’s individual service plan (ISP). The ISP is the basis for all service delivery
and should focus on the individual’s strengths, interests, talents, choices, preferences
and dreams as well as skill development, increasing independence, and assuring
health and safety. The ISP defines the goals and objectives established by the
individual and the services needed to assist the individual in meeting his/her goals.
It also defines the type, frequency and duration of each service selected by the
individual and serves as the authorizing document for all services. For individuals on
waivers, the payment authorization form must be completed prior to commencement
of services.
SSAs must assure that the individual to be served and other persons selected by the
individual, and, when applicable, the provider(s) selected by the individual, are all
active participants in the development of the ISP. SSAs are also responsible for
integrating all sources of supports available to meet the needs and desired
outcomes of the individual including alternative services.

44
 When assisting individuals with plan development, the focus should be on
such areas as helping the individual engage in meaningful, productive
activities and develop community connections; selecting the provider;
identifying the frequency of services and supports; and identifying the
funding source for each service and activity. The plan needs to specify
which services will be coordinated among which providers and across all
appropriate settings for the individual. If an ISP includes HCBS waiver
services, the plan must be in compliance with all applicable rules.
The ISP also serves as a key document to ensure that services are provided
in accordance with the plan, no matter who the service provider is, and
ensure that the health and welfare needs of the individual are met as
outlined in the plan. The ISP is also key to monitoring that the number of
Board authorized units of service are delivered.
SSAs do not “own” the plan but are the “recorders” of the plan who
document the process for the individual to achieve desired outcomes.

Critical Issues of Planning
45
 The ISP is the document that is the basis for not only what services and supports the individual
is to receive and what the health and welfare needs are of the individual, but the ISP is also
the means that allows for the monitoring of service providers. The plan must be sufficiently
specific to be able to document that the intent of the plan was met. It also needs to be written
to allow for adequate flexibility to meet the needs of the individual…sometimes a fine line to
walk.
Individual plans must be written in a manner that is easily understood by all concerned persons
including the individual, family members and those who will be implementing various service
and supports outlined in the plan. Plans need to contain sufficient detail to clearly define the
services to be delivered and must clearly identify health and safety concerns of the individual.
The plan must indicate how those involved in plan implementation will address those concerns.
Within the ISP, there must also be a balance between choices of the individual and the risks
incurred by those choices that may impact health and safety.
The planning process is an ongoing process. This means that the ISP will be changed and
updated as needed. This may be in response to changing desires of the individual, change in
providers, changes due to results of monitoring, changes in the individuals health or
circumstances or many other issues/occurrences.

Why is the ISP important?
46
 Individual service plans are important for a multitude of reasons. Some of
the most important reasons include:
 Individuals are relying on this plan to help them achieve their goals and
identified choices, preferences, desires, dreams and needs.
 Individuals are relying on this plan to develop more independence and acquire
more community connections.
 Individuals are relying on this plan to maintain their health and safety.
 Individuals are relying on this plan to develop new skills and improve existing
skills.
 Individuals are relying on this plan to develop community connections.
 Individuals are relying on providers to deliver services based on this plan.
 Providers are responsible for delivering services as outlined in the plan.
 Providers are held accountable for the proper delivery of services as outlined in
the plan.
 This is a legal document that provides a roadmap of the person’s life plan.
 Over time the ISP provides an historical view of the person’s life.

47
 SSAs need to be work collaboratively with the individual and his or
her family and circle of support, be responsive to the needs and
desires of the individual and family, and be respectful, in all
interactions with the individual and family.
The individual service plan (ISP) is what provides the content and
direction for what services and support are to be provided to the
individual. The best practices discussed above are some of the many
tools, principles and philosophies that should be used in the planning
and delivery of the services and supports to assure that those
services and supports result in meeting the intent of the plan, the
expected outcomes of the plan and provide the quality of life
chosen by the individual and his/her circle of support.

Preparation and Quality Assurance
for the ISP48
 Planning is a critical process that drives services and
supports and involves many people and numerous steps and
processes. These typically include:
 evaluating/determining choices, preferences needs and desires
of the individual;
 meeting to develop a plan, developing a budget based on
available resources, implementing the plan;
 evaluating the outcomes of the plan through quality assurance
reviews, revising or redeveloping the plan as needed.
Each of these are briefly discussed below. These steps may differ
based on the chosen planning process and other variables.

49
 Evaluation and data gathering provide the basis for the plan.
The SSA oversees the process of working with the individual and others to
gather and review information that is already available about the
individual including strengths, choices, preferences, desires and needs. The
SSA in conjunction with the team then decides if the group needs more
information to develop a plan to support the individual. If so, additional
information can be gathered using best practices.
 Collecting needed information.
The designated person gains permission to gather the needed information.
If there are guardians they must give informed, written permission.
Information can be gathered through a variety of means including formal
and informal assessments, functional assessments, circles of support, person-
centered planning, and other chosen best practices. Communication with the
individual and those who know the person best is critical to determining
what should be included in the person’s plan.

50
 Developing the individual’s plan based on gathered data.
The content of the individual plan drives the services and supports the
individual will receive. This plan must be clearly and well written. It is key to
achieving the desired outcomes and assuring the health and safety of the
individual. Team meetings are commonly held to develop the plan. Meetings
are usually composed of people that the individual invites. They are person
centered and typically include many of the people that provide services
and support to the individual. During the team meeting discussions and
planning occur to help the individual achieve their desired goals in life.
 Determining how the services and supports will be funded and developing an
individual budget.
How are services and supports to be funded? Is the individual eligible for
DD and related services? What other sources of funds are available? The
team/circle of support works with the individual to identify, secure and
budget available resources.

51
 Choosing a provider.
The individual has free choice of provider. The individual, with assistance as
needed, will choose the provider(s) to carry out the plan. This may include
residential providers, county boards, and a host of private providers.
 Implementation and Quality Assurance Reviews
Implementing the plan is the next essential step in providing services and supports to
assist the individual attain his or her desired outcomes. Quality assurance reviews
are periodically conducted to assure the plan is carried out in accordance with the
individual’s wishes as written in the plan and the expected outcomes are achieved.
 Revision Redevelopment of the Plan
When it is determined that the plan needs to be revised or redeveloped the process
begins again. The plan may need to be revised, reviewed or redeveloped for
various reasons, some of which include rule requirements, changes desired by the
individual, as a result of the quality assurance review, due to a change in the
persons circumstances, or many other reason.

52
 Examples of team members that may help the individual
with planning and supports:
 Guardians, family members, friends and advocates
 Providers and agencies
 Sheltered workshop personnel
 The individual’s employer
 Speech/Physical/Occupational therapists
 Service and Support Administrators
 Social Workers
 Local Transportation Agencies
 Supported Employment Staff (BVR or local employment agencies)

Excerpts from…
ISP Requirements in Rule 5123:2-1-11 Service and support administration.
(J) ISP development
The persons employed by or under subcontract with a county board to provide service and support
administration shall develop ISPs. If an ISP includes HCBS waiver services or Medicaid case management
services, those services shall be subject to approval by the department and ODJFS. If either department
approves, reduces, denies, or terminates HCBS waiver services, or Medicaid case management services
included in an ISP, the service and support administrator who is the single point of accountability for the
individual shall communicate with the individual to ensure compliance with paragraphs (J)(3) and (S) of
this rule. That person shall also:
(1) Ensure that the development or revision of the ISP:
(a) Occurs with the active participation of the individual to be served and other persons selected
by the individual, and, when applicable, the provider(s) selected by the individual;
(b) Addresses the results of the assessment process pursuant to paragraph (I) of this rule and of
the monitoring conducted pursuant to paragraph (N) of this rule;
(c) Focuses on the individual’s strengths, interests and talents;
(d) Integrates all sources of supports, including alternative services, available to meet the needs
and desired outcomes of the individual;
(e) Occurs in accordance with rules adopted by the department.
(2) Certify by signature and date that an ISP meets the following criteria for approval. This approval shall
occur prior to implementation.
(a) All ISPs shall:
(i) Assist the individual to engage in meaningful, productive activities and develop
community connections; and
(ii) Indicate the provider, the frequency, and the funding source for each service and
activity; and
(iii) Specify which services will be coordinated among which providers and across all
appropriate settings for the individual.
(b) An ISP that includes HCBS waiver services shall:
(i) Meet the requirements of paragraph (J)(2)(a) of this rule;
(ii) Indicate the provider type; and
(iii) With respect to that portion of the ISP that pertains to HCBS waiver services, meet
the requirements of paragraph (C)(2) of rule 5123:2-9-04 of the Administrative Code.
(3) Review and revise the ISP as appropriate under any of the following circumstances:
(a) At the request of the individual or a member of the individual’s team;
(b) Whenever the individual’s assessed needs, circumstances or status changes;
(c) As a result of ongoing monitoring of ISP implementation, quality assurance reviews, and/or
identified trends and patterns of unusual incidents or major unusual incidents; or
(d) With respect to HCBS waiver services and Medicaid case management services, if a service is
reduced, denied, or terminated by the department or ODJFS.

(4) Provide a complete copy of the ISP to the individual or his or her guardian and a copy of relevant
sections of the ISP to the individual’s providers.
(5) Provide an individual with written notification and explanation of the individual’s right to a Medicaid
fair hearing if the ISP process results in a recommendation for the approval, reduction, denial, or
termination of an HCBS waiver service or Medicaid case management service. Notice shall be provided
in accordance with section 5101.35 of the Revised Code.
(6) Provide an individual with written notification and explanation of the individual’s right to use the
administrative resolution of complaint process if the ISP process results in the reduction, denial, or
termination of a service other than an HCBS waiver service or Medicaid case management service. Such
written notice and explanation shall also be provided to an individual if the ISP process results in an
approved service that the individual does not want to receive, but is necessary to ensure the individual’s
health, safety, and welfare. Notice shall be provided in accordance with rule 5123:2-1-12 of the
Administrative Code.
5123:2-9-04 Medicaid local administrative authority.
(C) Duties of MLAA (MLAA means a county board with Medicaid local administrative authority for HCBS)
(1) The MLAA shall perform assessments and evaluations of the individual in accordance with division
(A)(1) of section 5126.055 of the Revised Code.
(2) ISPs shall be developed for each individual in accordance with applicable requirements and shall:
(a) Be written.
(b) Be developed by the person(s) employed by, or contracting with, the county board that is
responsible for service and support administration with the active participation of the individual,
other persons chosen by the individual, and, where applicable, the individual’s provider in
accordance with sections 5126.055 and 5126.15 of the Revised Code.
(c)Describe, regardless of funding source, medical and other services identified through the
assessment process to be furnished to the recipient, the service frequency, the service duration,
the type of provider who will furnish each service, and the completion and approval date(s) of
the ISP.
(d) Be the fundamental tool by which the MLAA and state will ensure the health, safety, and
welfare of the individuals served under the waiver. As such, it will be subject to periodic review
and update. These reviews will take place to determine the appropriateness and adequacy of
the services, and to ensure that the services furnished are consistent with the nature and
severity of the individual’s disability;
(e) Be updated annually. The ISP shall be updated more frequently if there is a change in the
individual’s condition, if the individual chooses a new provider or types of services. The county
board shall convene an ISP meeting within ten working days of a request from an individual for a
review of the ISP.
(f) Be subject to the approval of ODMRDD and ODJFS in accordance with sections 5111.871 and
5126.055 of the Revised Code.
(g) Identify the county board representative(s) responsible for service and support
administration.
(h) Maximize the use of natural supports and generic resources.
(i) Be maintained in accordance with rule 5101:3-1-17.2 of the Administrative Code.

Individual Rights: An Ohio Focus
54
 Throughout history, individuals with disabilities have often been
denied their rights that most Americans take for granted.
 Ohio has reinforced the rights of individuals with developmental
disability through statute. Section 5123.62 of the ORC Rights of
Persons with Mental Retardation or a Developmental Disabilities is
the statute that addresses these rights. Other Ohio statute and
Federal law address other aspects of rights of individuals as well.
 When interacting with individuals, including when providing services
and supports, it is imperative that you be aware of and honor each
individual’s rights. Following is information that will help you
recognize and honor those individual rights.

55
 What is the Revised Code?
The Ohio Revised Code (ORC) is the law in the state of Ohio. When
a bill is passed by the state legislature and signed by the Governor,
it becomes a part of the Ohio Revised Code. It is the law.
ORC 5123.62
The Ohio legislature passed a bill that identifies the “rights for
persons with mental retardation or a developmental disability” in
1986. It remains the law in Ohio today.
Federal Law
Rights for persons with DD are also in federal law. In addition, all
U.S. citizens have the rights guaranteed them in the U.S. Constitution.
There are the basic civil rights for everyone with or without
disabilities.

56
 What are ‘Rights’?
‘Rights’ are the rules that help to make everyone equal. As a
person, you have some rights when you are born. These are called
‘human rights’. In addition, you have ‘legal rights’ that are a part of
the law in this country and in this state (Ohio). It is important to know
your rights so that if people try to take them away, you can stop
them or get help to stop them.
 Differences in Adult and Children Rights
Legal rights are held by parents for their children because parents
are legal guardians unless a court has intervened. Every child has
basic human rights protected by state and federal law. A person is
“emancipated” at the age of 18 and assumes his/her legal rights.
This is true for people with or without disabilities.

57
 Guardianship
Individuals with DD are their own guardian at the age of 18 unless a
court has appointed a legal guardian. Guardianship may be full or
limited to specific areas. An individual who has a court appointed
guardian maintains all rights unless a specific right has been
restricted by the court or the guardian.
 What are ‘Responsibilities’?
‘Responsibilities’ are the things that other people expect us to
do. Responsible people know what their rights are and respect the
rights of other people. Being responsible means that you care about
the rights of other people.

58
 Additional Support Needed
Individuals with DD often need additional education in learning their
rights and responsibilities. Special classes and teaching materials
help people with DD learn more about their rights and how to speak
up and advocate for themselves.
 The Bill of Rights
Ohio’s law has specified ‘rights’ for individuals with mental
retardation and/or other developmental disabilities.
 It is the responsibility of all staff to assure that these rights are
granted and that each person with a developmental disability is
aware of and understands his or her rights.

ORC 5123.62
 The rights of persons
with a developmental
disability include, but
are not limited to, the
following:
 ORC 5123.62…
59

60
 Courtesy and Respect…
 Individuals have the right to be treated at all times with courtesy
and respect and with full recognition of their dignity and
individuality.
 In simple terms… To always be treated nicely and as a person no
matter the circumstances.
 A Safe Place To Live…
 The right to an appropriate, safe, and sanitary living environment
that complies with local, state, and federal standards and
recognizes the persons’ need for privacy and independence.
 In simple terms… Have a clean safe place to live in and a place
to be alone

61
 Good Nutrition…
 The right to food adequate to meet accepted
standards of nutrition.
 In simple terms… to have food that is good for you.
 Freedom of Religion…
 The right to practice the religion of their choice or to
abstain from the practice of religion.
 In simple terms… to be able to go, if you want, to any
church, temple, mosque

62
 Medical Care…
 The right of timely access to appropriate medical or dental
treatment.
 In simple terms…to be able to go to a doctor or dentist when you
are sick or need a check-up.
 Ancillary Services…
 The right of access to necessary ancillary services, including, but
not limited to, occupational therapy, physical therapy, speech
therapy, behavior modification and other psychological services.
 In simple terms…To be able to have people help you with the
way you walk, talk, do things with your hands, act or feel, if you
need it.

63
 Medical Treatment…
 The right to receive appropriate care and treatment in the
least intrusive manner.
 In simple terms…To be treated kindly and gently when you
receive the care you need and want.
 Privacy…
 The right to privacy, including both periods of privacy and
places of privacy.
 In simple terms…To be able to have time and a place to go
to be by yourself.

64
 Communication…
 The right to communicate freely with persons of their choice
in any reasonable manner they choose.
 In simple terms… To be able to call, write letters or talk to
anyone you want about anything you want
 Personal Property…
 The right to ownership and use of personal possessions so as
to maintain individuality and personal dignity.
 In simple terms… To be able to have your own things and to
be able to use them.

65
 Friendships…
 The right to social interaction with members of either sex.
 In simple terms… To be able to have men and women as
friends.
 Be All That You Can Be…
 The right of access to opportunities that enable individuals
to develop their full human potential.
 In simple terms… To be able to join in activities, have
friends, participate in community activities and do things
that will help you grow to be the best person you can be.

66
 Contribute to Your Own Support…
 The right to pursue vocational opportunities that will promote and
enhance economic independence.
 In simple terms…To be able to work at a job of one’s choosing
and make money.
 Americans with Disabilities Act …
 Assures employers shall not discriminate against a qualified
individual with a disability.
 Legislation passed by the United States Congress in 1990 to
prohibit discrimination against people with disabilities and
to guarantee them equal access to employment, public
services, public accommodations, and telecommunications.

67
 Equality…
 The right to be treated equally as citizens under the
law.
 In simple terms…To be treated just like everyone else.
 Free From Harm…
 The right to be free from emotional, psychological or
physical abuse.
 In simple terms…To not be hit, yelled at, cursed at or
called names that hurt you.

68
 Learning, Growing, Playing…
 The right to participate in appropriate programs in
education, training, social development, and habilitation and
in programs of reasonable recreation.
 In simple terms…To be able to learn new things, make
friends, have activities to do, and go out in your community
 Freedom To Choose…
 The right to participate in decisions that affect their lives.
 In simple terms…To be able to tell people what you want
and be part of making plans or decisions about your life

69
 Advocacy or Representation…
 The right to select a parent or advocate to act on their
behalf.
 In simple terms…To be able to ask someone you want to
help you, let others know how you feel or what you want.
 It’s My Money…
 The right to manage their personal financial affairs, based
on individual ability to do so.
 In simple terms…To be able to use your money to pay for
things you need and want.

70
 Privacy…
 The right to confidential treatment of all information in their
personal; and medical records, except to the extent that
disclosure or release of records is permitted under sections
5123.89 and 5126.044 of the Revised Code.
 In simple terms…To be able to say yes or no before people
talk about what you do at work or home or look at your file.
 ORC 5123.89
 Confidentiality of records; disclosure.
 ORC 5126.044
 Disclosure of identity of individual or release of record or report.

71
 Freedom of Speech…
 The right to voice grievances and recommend changes in policies
and services without restraint, interference, coercion,
discrimination, or reprisal.
 In simple terms…To be able to complain or ask for changes if you
do not like something without being afraid of getting in trouble.
 Freedom…
 The right to be free from unnecessary chemical or physical
restraints.
 In simple terms… Not be given medicine that you don't need or
want, nor be held down if you are not hurting yourself or others.

72
 The Right to Vote…
 The right to participate in the political process.
 In simple terms…To vote, learn about laws and your
community.
 The Right To Say “NO”…
 The right to refuse to participate in medical,
psychological, or other research experiments.
 In simple terms…To say “yes” or “no” to being a part
of a study or experiment.

ORC 5123.62 Client Rights
73
 Every state agency, county board of mental retardation and developmental disabilities, or
political subdivision that provides services, either directly or through a contract, to persons with
a developmental disability shall give each provider a copy of the list of rights contained in
section 5123.62 of the Revised Code. Each public and private provider of services shall carry
out the requirements of this section in addition to any other posting or notification requirements
imposed by local, state, or federal law or rules.
 The provider shall make copies of the list of rights and shall be responsible for an initial
distribution of the list to each individual receiving services from the provider. If the individual is
unable to read the list, the provider shall communicate the contents of the list to the individual
to the extent practicable in a manner that the individual understands. The individual receiving
services or the parent, guardian, or advocate of the individual shall sign an acknowledgement
of receipt of a copy of the list of rights, and a copy of the signed acknowledgement shall be
placed in the individual’s file. The provider shall also be responsible for answering any
questions and giving any explanations necessary to assist the individual to understand the
rights enumerated. Instruction in these rights shall be documented.
 Each provider shall make available to all persons receiving services and all employees and
visitors a copy of the list of rights and the addresses and telephone numbers of the legal
rights service, the department of mental retardation and developmental disabilities, and the
county board of mental retardation and developmental disabilities of the county in which the
provider provides services.

House of New Hope
5123.62 Rights of persons with a developmental disability.
The rights of persons with mental retardation or a developmental disability include,
but are not limited to, the following:
(A) The right to be treated at all times with courtesy and respect and with full
recognition of their dignity and individuality;
(B) The right to an appropriate, safe, and sanitary living environment that complies
with local, state, and federal standards and recognizes the persons’ need for
privacy and independence;
(C) The right to food adequate to meet accepted standards of nutrition;
(D) The right to practice the religion of their choice or to abstain from the practice
of religion;
(E) The right of timely access to appropriate medical or dental treatment;
(F) The right of access to necessary ancillary services, including, but not limited to,
occupational therapy, physical therapy, speech therapy, and behavior modification
and other psychological services;
(G) The right to receive appropriate care and treatment in the least intrusive
manner;
(H) The right to privacy, including both periods of privacy and places of privacy;
(I) The right to communicate freely with persons of their choice in any reasonable
manner they choose;
(J) The right to ownership and use of personal possessions so as to maintain
individuality and personal dignity;
(K) The right to social interaction with members of either sex;
(L) The right of access to opportunities that enable individuals to develop their full
human potential;
(M) The right to pursue vocational opportunities that will promote and enhance
economic independence;
(N) The right to be treated equally as citizens under the law;
(O) The right to be free from emotional, psychological, and physical abuse;

House of New Hope
(P) The right to participate in appropriate programs of education, training, social
development, and habilitation and in programs of reasonable recreation;
(Q) The right to participate in decisions that affect their lives;
(R) The right to select a parent or advocate to act on their behalf;
(S) The right to manage their personal financial affairs, based on individual ability
to do so;
(T) The right to confidential treatment of all information in their personal and
medical records, except to the extent that disclosure or release of records is
permitted under sections 5123.89 and 5126.044 of the Revised Code;
(U) The right to voice grievances and recommend changes in policies and services
without restraint, interference, coercion, discrimination, or reprisal;
(V) The right to be free from unnecessary chemical or physical restraints;
(W) The right to participate in the political process;
(X) The right to refuse to participate in medical, psychological, or other research or
experiments.
Effective Date: 09-22-2000

75
 5123.64 Enforcement duties of providers; procedure upon violation
 Every provider of services to persons a developmental disability shall establish policies
and programs to ensure that all staff members are familiar with the rights enumerated in
section 5123.62 of the Revised Code and observe those rights in their contacts with
persons receiving services.
 Any policy, procedure, or rule of the provider that conflicts with any of the rights
enumerated shall be null and void. Every provider shall establish written procedures for
resolving complaints of violations of those rights. A copy of the procedures shall be
provided to any person receiving services or to any parent, guardian, or advocate of a
person receiving services.
 Any person with mental retardation or a developmental disability who believes that the
person’s rights as enumerated in section 5123.62 of the Revised Code have been violated
may:
 Bring the violation to the attention of the provider for resolution;
 Report the violation to the department of mental retardation and developmental
disabilities, the ombudsperson section of the legal rights service, or the appropriate
county board of mental retardation and developmental disabilities;
 Take any other appropriate action to ensure compliance with sections 5123.60 to
5123.64 of the Revised Code, including the filing of a legal action to enforce rights or
to recover damages for violation of rights.

76
 5123.65 Self-administration of medication.
 In addition to the rights specified in section 5123.62 of
the Revised Code, individuals with developmental
disabilities who can safely self-administer medication
or receive assistance with self-administration of
medication have the right to self-administer medication
or receive assistance with the self-administration of
medication. The department of mental retardation and
developmental disabilities shall adopt rules as it
considers necessary to implement and enforce this
section. The rules shall be adopted in accordance with
Chapter 119. of the Revised Code.

77
 Remember….it is the responsibility of everyone who
works with, supports or otherwise interacts with persons
with disabilities to assure they are aware of, understand
and are afforded their rights.
 When Rights Violations Becomes an MUI
Some rights violations must be reported as a Major
Unusual Incident. A rights violation that results in
physical or emotional harm must be reported as an
MUI.

78
 Restricting Rights
 Rights must never be restricted without the approval of the individual and/or his
or her guardian. Rights are often violated through the use of behavior plans,
through the mode of “not enough money” and through medication
“restraint.” Everyone who supports an individual with DD must be on guard to
guarantee and protect rights.
 Reporting Rights Violations…
 Any person with DD who believes their rights have been violated may:
 Tell their provider so it may be resolved;
 Report it to the Department of DD or the Ohio Legal Rights Service;
 Tell their Service and Support Administrator; or,
 File a legal action.
 Annual Review of Rights
 Individuals who receive services from a county board of DD must have their
rights reviewed each year and sign a statement that it was done.

Rights: An International Focus
79
 The United Nations Department of Economic and Social Affairs based in New York
and the Office of the High Commissioner for Human Rights in Geneva have multiple
responsibilities including:
 to support the full and effective participation of persons with disabilities in social life and
development;
 to advance the rights and protect the dignity of persons with disabilities and;
 to promote equal access to employment, education, information, goods and services.
 One of the mandates of the Secretariat for the Convention on the Rights of Persons
with Disabilities was to develop the Convention on the Rights of Persons with
Disabilities which was adopted in 2006.
 The Convention on the Rights of Persons with Disabilities and Optional Protocol
entered into force on May 3, 2008. This marked ‘a major milestone in the effort to
promote, protect and ensure the full and equal enjoyment of all human rights and
fundamental freedoms of persons with disabilities and to promote respect for their
inherent dignity’.

80
 Over 130 nations have now signed the Convention agreeing to abide by its principles. There
are eight guiding principles that underlie the Convention and each one of its specific articles.
These are:
 Respect for inherent dignity, individual autonomy including the freedon to make one’s own choices, and
independence of person’s
 Non-discrimination
 Full and effective participation and inclusion in society
 Respect for difference and acceptance of persons with disabilities as part of human diversity and
humanity
 Equality of opportunity
 Accessibility
 Equality between men and women
 Respect for the evolving capacities of children with disabilities and respect for the right of children with
disabilities to preserve their identities

Monitoring occurs to assure implementation through a committee on the rights of persons with
disabilities. For more information on the Convention, visit www. un.org/disabilities.

Harvard Project on Disability (www.hpod.org)
A human rights
handbook for people
with developmental
disabilities
We
Have
Human
Rights
We
Have
Human
Rights

2
Contents
About human rights . . . . . . . . . . . . . . . . . . . . .3
Section A. Your rights
Chapter 1. Respect for the individual . . . . . .4
Equality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5
Safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6
Home and family . . . . . . . . . . . . . . . . . . . . . . .7
Privacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .8
Chapter 2. Inclusion in the community . . . . .9
Independent Living . . . . . . . . . . . . . . . . . . . .10
Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11
Education . . . . . . . . . . . . . . . . . . . . . . . . . . . .12
Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13
Chapter 3. Change in the society . . . . . . . . .14
Access . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15
Political life . . . . . . . . . . . . . . . . . . . . . . . . . .16
New attitudes . . . . . . . . . . . . . . . . . . . . . . . . .17
Culture and sports . . . . . . . . . . . . . . . . . . . . .18
Section B. Building skills together
Exercise 1: I want to live like this! . . . . . . .19-22
Exercise 2: Speak up with power . . . . . . . .23-26
Get together•Make a plan•Take action . . . . .27
A book for self-advocates
Welcome to the power of
human rights. This book is for
people with developmental
disabilities. You can use it to
learn about your rights. You can
also use it to talk with others
about your rights.
When you speak up for yourself,
you are a self-advocate. When
you work together with others,
you can make change happen.
Welcome to the power of
human rights!
A human rights
handbook for people
with developmental
disabilities
We
Have
Human
Rights
We
Have
Human
Rights
• Authors: Bret Hesla and Mary Kay Kennedy, Advocating
Change Together (www.selfadvocacy.org)
• Design: Donn Poll
• Special thanks to
* BlueLaw International LLP
* Authors of Human Rights. Yes! Janet E. Lord,
Katherine N. Guernsey, Joelle M. Balfe, Valerie Karr
and Editor Nancy Flowers.
• All photos printed with permission. We’re grateful to the
many generous contributors, as listed with each photo.
The Harvard Project on Disability is generously supported by a
grant from Foundation Open Society (Zug).
© 2008 The President and Fellows of Harvard College.
All rights reserved.
ISBN 978-1-60643-065-1
Hungary. Photo: Hungarian Society of People with
Golden Heart.

3
Because we are human, we have human rights.
This law is called
the Convention on
the Rights of Persons
with Disabilities
Up next: Chapter 1: Four key rights about respect for the individual
In the past, people with disabilities have not been
treated as equals. But that is changing.
In 2007, the United
Nations passed a
new law. It says
people with
disabilities have
the same rights as
everyone else. It
says all people with
disabilities are equal
before the law. It says this applies to
women and girls, and children with
disabilities, too.
If my country signs on, what will change?
Your government promises to take action to end
discrimination based on disability! They will:
• change laws and make new ones
• protect people’s rights
• enforce the laws
• educate the public
This book is about your human rights.
It tells about some of the key rights you have because
of this law. It also gives you ideas for how to work
with others to get your rights.
New York.
Photo: UN photo/
Paulo FilgueirasVoices
“We must forever keep
to our own ideal and
pursuit and continue
making fresh efforts
for the advancement
of people with
disabilities.”
Deng Pufang, China

4
We have many rights that protect our basic human dignity,
our bodies, and what we do at home.
Here are four of those rights:
Chapter 1. Respect for the individual
Equality
We have the right to be treated as equal citizens.
Safety
We have the right to be safe from violence and abuse.
Home and family
We have the right to be part of a family—and to start one.
Privacy
We have the right to privacy, no matter where we live.
Up next: More about these rights of respect
Romania. Photo: R. Antonovici
Voices
“My body’s nobody’s
body but mine.You run
your own body, let me
run mine.”
Peter Alsop, USA
George-Daniel is from Romania.
He lives at home with his mom
and dad and sister. His family
has taken vacations at the beach
since he was young. Today he is
ten years old and his family
makes every effort to give him a
life like any other child.

5
Equality
We have the right to be treated
as equal citizens.
Voices
“The problem is not
how to wipe out the
differences, but how
to unite with the
differences intact.”
Rabindranath
Tagore, Bengali
poet and musician
Nepal. Photo:
CIL Kathmandu
Sound familiar?
What does equal mean? I can’t vote and I don’t have a job.
My country’s law says I cannot make my own decisions.
It feels like there is a wall between me and others.
It’s a wall I can’t see but can feel.
Our school didn’t have the money to teach me.
My family often ignores what I want.
What does the new law say about equality?
We need laws that protect our equal rights.
Society must break down the walls that keep us from having the same
rights as everyone else.
Discrimination is one wall.
So is poverty. So is poor education.
Once the walls are down, we still need support.
Because of discrimination in the past, we need extra help to make things
right.
We have the legal right to make decisions about our lives.
Group work
Laws come from dreams
Pass out paper. Ask each person (with
support) to draw a picture or write down
one law they would like to have to
protect their equal rights. Later, ask a
local leader to come to your meeting.
Each person can show and tell about
their idea. Then discuss what laws you
do have. Also talk about how to get
new ones.

6
Safety
We have the right to be safe
from violence and abuse.
Sound familiar?
We are abused in secret, in places where we live.
I was given heavy drugs to control and punish me.
I was deprived of food and water.
They did experiments on me. I was not asked.
I am forced to work hard for no pay.
I think people harm us because they are afraid of us.
What does the new law say about safety?
We have a right to be safe—at home, at school, at the doctor.
It is not our disability that puts us at risk; rather it is the attitude
of the abusers.
The state should seek out and punish abusers.
Police should be trained about disability.
Even in prison, we have the right to be safe from harm.
We have the right to decide what happens to our bodies.
Group work
I know who to tell
Find out how people with disabilities can report abuse. Tell
it to your group. Have each person make a poster with this
information on it. Talk about why it might be wise to let
family and caretakers know that you will report abuse. Many
people will need support to report. Decide who each person
could ask to help them. Role-play telling someone you trust
about abuse and asking for support and help.
Note: This may bring out painful stories. Some in your group might need
one-to-one support. Plan to have extra people to help with this. Also, know
the laws in your area. Some stories may be told that you must report.
Key fact
People with disabilities
are more likely to be
sexually abused in their
lives.
Romania. Photo: R. Antonovici

7
Home and
family
We have the right
to be a part of a family—
and to start one.
Alert
If your country signed
the UN treaty, it will
help you get these
rights.
Key fact
In many countries, it
is common for people
with disabilities to be
taken away from
family to live in
institutions.
Sri Lanka. Photo:
Handicap International
Sound familiar?
I was taken away from my family
when I was six years old.
I was sterilized against my will
so I can’t be a parent.
I want to get married, but my guardian keeps saying no.
I could raise children if I had a little help.
They said the only way for me to get help was to move away
from home.
What does the new law say about family?
Everyone deserves to be part of a family.
Growing up in a safe home, with a family, is the right place
for all kids to be.
We have the right to form loving relationships.
We can love whoever we want.
We have the right to get married if we choose.
Our bodies and our sexuality are good things.
We should not be stopped from having kids just because of
our disability.
Group work
Family portrait
Ask each person to draw a picture. Say,
“Show the family you’d like to be a part
of someday. It could be what you have
now or be very different.” Later, take turns
telling about your picture. Then ask,
“What’s one thing you need to reach
this goal?”

8
Privacy
We have the right to privacy,
no matter where we live.
Up next: Chapter 2: Four key rights about inclusion in the community
Sound familiar?
Someone is always hovering around when I’m with my boyfriend.
My caregiver stole money from me.
The doctor told my health story to
a bunch of strangers in the room.
My helper tells other people all sorts of stuff about me.
What does the new law say about privacy?
What we do in our room is our business.
We decide what others can know about our lives.
No one can read our letters unless we say it’s OK.
No one can listen to our phone calls unless we say it’s OK.
We have the right to private space to be with our sweetheart.
Helpers have no right to tell others what they know about us.
Group work
Role reversal
Make teams of two: one person with a disability (the watcher), one
without (the doer). The doer does two private things. They may pretend
to call their sweethearts. Or write a short letter. The watcher stays close
by and watches the doer very carefully. After 10 minutes, gather as a
large group. Take turns telling how it felt to role play. Next tell how it
feels when people watch you do private things in real life.
Australia. Photo: Tutti Ensemble Inc.
Voices
“My privacy is just
like anyone else’s...
it’s private.”
Rosemary Kayess,
Australia

9
We have many rights that help make sure we play an equal
role in our community. Here are four of these rights.
Chapter 2. Inclusion in the community
Independent living
We have an equal right to live on our own in the
community.
Work
We have an equal right to work, in a job we choose, and to
earn a decent living.
Education
We have the right to an equal education, side by side with
everyone else.
Health
We have the right to the best possible health care.
Guatemala.
Photo: Regi Marroquin
Voices
“Living independently
is about being able
to make our own
decisions as to where
and with whom we
live... It is about
helping each other
and working
together.”
Robert Martin,
New Zealand

10
Independent
living
We have an equal right
to live on our own in the community
(with support!).
Alert
If your country signs the
treaty, it will pass laws
and help you get these
rights.
Australia.
Photo: Tutti Ensemble Inc.
Sound familiar?
I want to get out of this big institution.
I live a long way from shops, and have no way to get there.
They told me I have to live with someone I don’t know.
I don’t have enough money for food and clothes.
What does the new law say about independent living?
We decide where we live.
We decide who we live with.
We decide how we live.
We need key information so we can decide what is
best for us.
Independent does NOT mean that no one helps us.
We have the right to support to be as independent
as we can be.
Our choices should be respected, not ignored.
We have the right to a decent life. Enough food.
Enough clothing. A place to live. Clean water.
Group work
I want to live like this. (Go to page 19.)
Voices
“These nurses were…
doing things for me
around the clock. I
didn’t have to make any
decisions for myself….
When they all finally left,
that’s when I realized
that I could have a life,
despite what everyone
was saying. I could make
choices, and that is
freedom.”
Ed Roberts, USA

11
Work
We have the equal right to
work, in a job we choose,
and to earn a decent living.
The right to work
does not mean we
will all get a job. But
it means we have an
equal chance to get
a job.
Voices
”Everybody can be
great... because
anybody can serve.
You don’t have to
have a college
degree to serve.”
Martin Luther
King, Jr., USA
Ethiopia.
Photo: ILO/M. Crozet 2003
Sound familiar?
The job was open, but I had no way to get there.
“Hiring someone like you will cost me more than it’s worth.”
I want a real job; one that makes a difference.
When they saw me at the interview, I knew they would not hire me.
They will not hire me because they think I am not healthy.
What does the new law say about work?
Our work is more than something to keep us busy.
We are a labor force waiting to be tapped.
We should get equal pay for equal work.
Wages help us enjoy our other rights.
We have an equal right to get a job.
We need to be able to ride the bus to hold a job.
We need good health care to be able to keep a job.
We need laws to protect our right to work.
We have a lot to give.
Group work
What does that mean?
Work as a group to read what the new UN law says about work (below)
and figure out what it means. Here’s how: Read it out loud. Pause every few
words and ask what that part means. Include every person in the process.
Rewrite with simple words, starting with “We have the right to...” When
you’re done, rewrite on poster paper and decorate. Send copies to local
leaders with a letter. Ask them how your country is making laws to protect
this right.
“State Parties recognize the right of persons with
disabilities to work, on an equal bases with others:
this includes the right to the opportunities to gain a
living by work freely chosen or accepted in the labor
market and work environment that is open, inclusive
and accessible to people with disabilities.”

12
Education
We have the right
to an equal education, side by
side with everyone else.
Alert
If your country signed the
treaty, it will help you get
these rights.
We cannot be excluded
from any school activity
because we have a
disability.
Key fact
More than 90% of all
children with disabilities
in Africa do NOT attend
school.
J. Balescut, 2005
Sound familiar?
I was taught in a separate classroom. My only
classmates were kids with disabilities.
We got babyish material to work on.
I wanted art but our class never got it.
There was no bus, so I didn’t go to school.
I never was taught to read.
What does the new law say about education?
Just because we have a disability doesn’t mean we can’t learn.
Our education should be just as good as that for any child.
We belong in the regular classroom as much as possible.
We want to learn, not just to be put in the classroom.
The school must change so it works for us, too.
We should be taught in a way we can understand.
If we need support to take part in an equal way, we should get it.
Teachers must be taught about their own prejudices.
Teachers must learn how best to teach us.
The government must hire trained teachers.
Group work
School days
Each person find a partner. Give these
instructions. “Think about school. Talk with
your partner about:
• the best parts of your school experience.
What made it so good?
• the worst parts of your school experience.
What made it so bad?”
Gather as a large group. Have each pair share
two or three thoughts. Ask everyone: Did any
“worst experiences” violate the right to
education? How?
Cambodia. Photo: Heng Sorin

13
Up next: Chapter 3: Four key rights about how society must change
Alert
If your country signs
the treaty, it will help
you get these rights.
Key fact
In California, USA,
almost 2/3 of people
with developmental
disabilities said their
health worker talks to
someone else in the
room but not them.
Kosovo.
Photo: Mental Disability
Rights International (MDRI)
Health
We have the right
to the best possible health care.Sound familiar?
I can’t afford health insurance.
The doctor talks to my mom but not to me.
No one told me about HIV.
I don’t have the money to get my teeth fixed.
My medications are wrong, but the doctor can’t fix it.
What does the new law say about health?
We should have the same health care as others.
Our care should be as good as others’ and not cost more.
We should not have to travel farther than others to get care.
Insurance companies must treat us equally.
Medical workers must treat us equally.
Health is more than health care.
These make us less healthy: being poor, poor schooling,
poor housing.
These help us be well: enough money, enough education,
enough for a good life.
Society must reach for the top—the best well-being for
each person.
Group work
Teach the doctors
Pretend you’ve been asked to teach a group of doctors and
nurses. Teach them how to work with people who have a
disability. In groups of three, make a list of the “dos and
don’ts.” Then read your lists to the whole group. Make a
combined list and consider who to share it with.
You don’t have a right to be healthy.
But you do have the right to the
same quality of care as everyone
else.
Disability is not a sickness.

14
Chapter 3. Change in the society
Voices
“People in Qatar are
finally starting to behave
right. The family
attitude is changing.
Now they take the
handicapped child to
public malls and parks.
This was not happening
six or seven years ago.
We must be patient and
continue to educate
society.”
Saif al-Hajri, Qatar
Access
We have an equal right to be able to get to
and use public spaces and public services.
Political life
We have an equal right to vote and have a say in laws
and policies that affect us.
New attitudes
We are regular people and have the right to be
treated as any other person.
Culture and sports
We have the right to take equal part in arts, sports
and leisure.
USA. Photo: Advocating Change Together
“I work in food services at the college in
my town. I love my job. My co-workers
respect me and I respect them. We all
learn from each other. My husband and I
own our own home. We just paid off the
loan. We take the bus a lot of places. We
also get support from staff to drive us
places.” - Brenda, USA
Society has to change so that we have equal rights.
Here are four of these rights:

15
Access
We have an equal right
to be able to use public spaces
and public services.
Alert
If your country
signed the treaty, it
will help you get
these rights.
Voices
“We cannot afford
to let the issue of
disabilities be simply
an afterthought…
Accessibility... has
got to be a design
feature, not an
add-on.”
William Kennard,
USA
Sound familiar?
The courthouse was way up on a hill. I couldn’t get there.
The explanation was to hard to understand.
So I had no idea what to do.
I couldn’t join the team. They said it wasn’t the place for me.
There was no bus, so I couldn’t go to the doctor.
What does the new law say about access?
Buildings must have a way for us to get in.
We have the right to information in a way we can understand:
Sign language. Simple language. Someone explaining it to us.
If we need rides to be included, we have the right to get them.
If we need an assistant to be included, we have the right to get
the help we need.
When there is a vote, someone must tell us.
Group work
Practice seeing access
Ask: “Was today's meeting
accessible?” Make four
teams, one each for “meeting
space,” “meeting notice,”
“transportation,” and “meeting
process.” Ask each group:
“When you look at who showed
up for this meeting, what does it
tell you about our own access?”
Share results. Then ask, “How
can we do better?” AND “How
can our community do better?”
Indonesia. Photo: Handicap International

16
Political
life
We have an equal right to vote
and have a say in laws
and policies that affect us.
Voices
“South Africans with
disabilities astounded the
nation in April 1994.
They braved the bombs
and threats that preceded
South Africa’s first-ever
democratic elections.
Images of disabled
people—queuing at
the polls, arriving in
wheelbarrows, being led
by family members, some
crawling for kilometers to
cast their first vote—filled
our television screens
during those historic three
days.”
Maria Rantho, South
Africa
USA. Photo: Human Policy Press, Syracuse University
Sound familiar?
I have a disability so I can’t vote.
Politicians and leaders often ignore us.
We’re not seen as important, so we weren’t invited to the meeting.
I could not understand what was happening, so I was not involved.
How could I vote? I wasn’t told when and where the election was.
What does the new law say about political life?
We have an equal right to vote.
We have a right to have someone help us vote.
We have a right to a secret vote.
We must have access to the polling place.
When public meetings happen, we should be told about them.
And we should have the support we need to be there.
We should be included.
We should have a say in policies and laws that affect our lives.
Group work
No vote, no voice
Make a list of barriers to voting for people
with developmental disabilities. Ask
everyone: “Why is it hard to vote?” Divide
into groups of three. Have each group
create a very short skit showing one
problem. Perform each for the group.
After each, ask “What could we do to
solve this problem?”

17
New
attitudes
We are regular people
and have the right to be treated
as any other person.
Key fact
In India, about half of
all households that
have a member with
a disability view the
cause of disability as
a “curse of God.”
World Bank
survey, 2007
Voices
“We are tired of
being labeled
‘mentally retarded.’
We are people first
before our
disability.”
Mia Farah, Lebanon
Cambodia. Photo: Handicap International
Sound familiar?
Have you ever heard these bad ideas?
Disability is a medical “problem,”
to be fixed by experts.
We are helpless.
We are innocent children.
People label us as “special.”
We are objects of fear.
Stories and movies are full of villains who have a disability.
What does the new law say about attitudes?
Our country must work to spread the word:
We are regular people.
We are not a problem. Society has a problem.
The problem is we are treated badly and denied rights.
We don’t need to be fixed. Society needs to be fixed.
We are not broken. Society is broken.
We must be included in decisions about our lives.
We are in charge of our lives. Not some experts.
Group work
At the movies
In your group, talk about how books
and movies show disability. “Do you
see people with disabilities in movies?”
“Are they regular people?” “Heroes?”
“Bad guys?” Ask, “What do books and
movies teach people about disability?”
and “What can we do about it?”
bad
idea
bad
idea bad
idea
bad
idea
bad
idea
bad
idea

18
Culture
and sports
We have the right to take equal
part in arts, sports and leisure.
Up next: An exercise about where you want to live
Alert
If your country signs the
treaty, it will help you get
these rights.
Voices
“Whatever the speed of
our feet or the power of
our arms, each of us is
capable of the highest
virtues. Intelligence does
not limit love, nor wealth
produce friendship.”
Eunice Kennedy Shriver,
USA
Iraq. Photo: Special Olympics
Sound familiar?
I was never encouraged to make music.
If there’s no bus, we can’t go to the movies.
We can’t read the menu, so can’t eat at the restaurant.
The school soccer team does not allow me to play.
What does the new law say about culture and sports?
We are artists, musicians, actors, poets and athletes, just like
everyone else.
We have talents to give to the world.
Arts give meaning to life.
Arts and sports are a key part of belonging to society.
In many cases, we are blocked from being a part of cultural
events.
Schools need to work to include children with disabilities in
arts and sports.
We have the right to play sports with others who have
disabilities.
We also have the right to play sports that are open to everyone.
Group work
The guessing game
Give time for each person to make a list (with help, if
needed) of things they like to do (basketball, reading,
concerts, etc). Collect and read lists aloud one at a
time. Everyone guesses who made that list. Afterwards,
ask, “How did you guess? What do these lists tell us
about a person?” and “How do these things make us
who we are?”

19
We have the right to decide where
we live. We have the right to
decide how we live. We have the
right to decide who we live with.
But sometimes we have not been
able to do so. In fact, when life is
hard, it’s hard to even imagine what
you want.
This exercise gives you practice
at deciding. It helps you imagine
how you want to live. It gives you
practice at telling others your
dream.
Section B. Building skills together Exercise 1:
I want to live
like this!
Living independently
in the community
Turn the page for step-by-step instructions
Argentina. UN Photo/ L. Solmssem • Korea. Photo: International Labor Organization • Romania. Photo: R. Antonovici

20
Exercise 1: I want to live like this!
This exercise adapted from
Training for Transformation:
A Handbook for
Community Workers,
by Anne Hope and Sally
Timmel, Mambo Press,
1984
Goal: People learn about the right to live where they choose and how
they choose. They notice what support they need and name what
stands in their way.
Description: People silently look over a number of photos. They choose
one that shows something they want. Then they talk about the support
they need to get it, and what, if anything, stands in the way.
Materials needed: Lots of magazines, scissors, adhesive tape.
In advance: Gather magazines with a big variety of pictures from your
culture. Get pictures showing where and how people live—houses,
apartments, institutions, tents, families, roommates, etc. Get as many
as you can. Get a big variety. It’s OK to have several of each image.
Spread the pictures out widely—maybe you’ll need more space than
one table. On the wall, put “I choose where I live.”
1. Tell about this right (see page 10).
2. Explain the pictures. “On the table here we have lots of pictures
showing different ways people live.”
3. Tell the plan. Look, don’t take. “You’ll have time to look at all the
pictures and think about one or two that fit for you, that show where
and how you want to live. Don’t pick up the pictures, just look.”
4. Prepare for silence. “While you’re looking, we’d like to have no
talking.”
5. Invite everyone to go look. “Ready? OK, with no talking, we’ll take
about five minutes for everyone to look at the pictures.”
6. Take one. After five minutes, invite everyone (again silently) to go
take one or two pictures that show how they want to live. Then all
sit down.
7. Show and tell. One at a time, ask each person to post their picture
on the wall and tell the group about why they chose it—about where
and how they want to live.
LLeeaaddeerr oonnllyy lleeaaddss
Do not try to take part
if you are leading this
exercise. Your job is
to help others. You
explain, you watch
the time.

21
8. Discussion: After everyone has gone, notice similarities and
differences among people’s choices. Also call attention to the
images not picked. “Do any people with disabilities live like this?”
“Why did no one pick these?”
9. Option: Worksheet. Have people work in pairs to think more
deeply about their picture choices. Give each person a copy of
the worksheet (page 22). Have people work in pairs to answer the
questions, “What support do you need to live this way?” and
“What stands in the way?”
A DECENT LIFE
(Follow-up Option A)
Do the same exercise for
the right to have enough
for a decent life. Gather
pictures showing things
necessary for a decent life
(food, clothes, etc). Repeat
steps 1-9 for the right to
live a decent life.
CULTURE AND SPORTS
(Follow-up Option B)
Do the same exercise for the
right to enjoy sports, leisure
and art. Gather pictures
showing how people enjoy
life with culture, sports,
leisure, art. Repeat steps 1-9
for the right to choose how
you live (cultural life).
Living
independently
in the community
master--make copies
I want to live like this:
Glue picture here.
Up next—an exercise to practice speaking up for yourself.
What stands in the way?
__________________________
__________________________
__________________________
__________________________
__________________________
__________________________
What support do I need?
__________________________
__________________________
__________________________
__________________________
__________________________
__________________________
NAME
Worksheet: p. 22
TTiimmee’’ss uupp
As workshop leader,
make sure everyone has
a chance to talk. You
have to be willing to
gently cut people off if
they are going too long,
so that it’s fair to
everyone.
USA. Photo: Partnership Resources Inc. Bangladesh. Photo: Handicap International

22
worksheet—make copies
I want to live like this:
Glue picture here.
Up next: An exercise to practice speaking up for yourself
What stands in the way?
__________________________
__________________________
__________________________
__________________________
__________________________
__________________________
What support do I need?
__________________________
__________________________
__________________________
__________________________
__________________________
__________________________
NAME

23
stro
ng
Assertive
Aggressive
Three choices. When we talk, what we
say is only half of the message. The other
half is how we say it. There are three
choices. One way is to be passive, or shy
(you give up easily). A second way is to be
aggressive, or threatening. The best way
is to be assertive. Assertive means you
respect others and stand up for yourself.
This exercise helps you practice that skill.
Passive
r
espect self and other person
eye cont
act
det
ermined
weak
shy
no eye conta
ct
don’t respect se
lf
harsh
th
reat to the other person
don’t respect the otherpe
rson
Section B. Building skills together Exercise 2:
Speak up
with power
How to be assertive
Turn the page to get started with this exercise

24
Exercise 2: Speak up with power
Role-play cards, p.26.
Not a Performance
Some people get nervous
about acting. Try to get
everyone involved in a
way that is comfortable
for them. The key is to
have fun!
26
Role-play ideas
Getting health care
Actor: a person needing health care
Co-actors: the person’s friend and a nurse or
doctor
Scene: the local clinic
A person with a disability needs treatment for a
minor injury. The nurse looks only at the person’s
friend. The nurse asks the friend about the prob-
lem. The nurse does not ask the person who has
the problem. The person tries to talk anyway, but
the nurse keeps talking to the friend.
The teaser
Actor: a worker who is being teased
Co-actors: a worker who is teasing and two
workers who are watching
Scene: the workplace
A worker is busy doing her job. Another worker
comes up and starts teasing her. She says, “You
are slow.” Two other workers are watching. They
do not know what they should do. The teaser will
not stop the teasing.
The meeting
Actor: a person trying to speak at a meeting
Co-actor: a person who keeps interrupting
Scene: a community meeting
A person is trying to speak at a meeting about
buses. They want to tell how they need more
buses. They want to tell about how they can’t get
a job without a way to get there. It is their turn to
speak, but another person keeps interrupting.
Buying a shirt
Actor: a shopper
Co-actor: a sales person
Scene: a clothing store
A person is shopping in a clothing store. A sales
person has decided that one certain shirt would be
just right for the customer. The shirt is not what the
customer likes. It is also too babyish. The sales
person is really pushy.
We have rights
Actor: (you decide)
Co-actor: (you decide)
Scene: (you decide)
Create your own role-play. Choose one right.
Show how that right comes into everyday life.
Show how a person wants something but does not
get it. Keep it simple.
One small step
Actor: someone who uses a wheelchair
Co-actor: the manager of a store
Scene: a store
A person who uses a wheelchair likes to shop.
His favorite store is not accessible. There is a
small step in front of the door. So, the person
needs to have a friend along to help. Or he
must wait until a stranger comes along to
help. The person is meeting with the store
manager to talk about this human rights
problem.
Goal: To learn how to be assertive. To see why it’s the best way to
get your rights.
Description: People take turns role-playing simple skits three
times: once being passive, once aggressive, and once assertive.
Talk about the difference afterward.
1. Introduce the topic.
Ask people to gather in a circle. Explain the topic. (Use “Three
choices,” page 23.) Ask, “Has anyone heard of any of these three?”
Let people respond. Then ask, “Which do you think is the best way
to get your human rights?”
2. Explain what a role-play is.
Say, “We're going to learn about these three ways using role-play.
Role-playing is acting. We make up a simple story. You get a part to
play. Then you're told how to act.”
Then say, “We will do each role-play three times. Each time you
can try a different way of acting.”
3. Choose a story idea.
Pick a simple situation where something is not right. You can use a
suggestion from the group, or pick an idea from page 26. Ask for
volunteers to act it out. Have one person be the main role. Help the
actors think of a few simple lines of what to say. Run the role-play
three times. First have the main character be passive. Next time,
aggressive. Last time, assertive.
4. Let the skits be very short.
Stop each role-play once the point is seen. Then say, “Now let’s talk
about what we just saw.” Use some of the questions on page 23.
5. Repeat many times.
Give every person a chance. Try other role-plays. Follow the same
process (Steps 3 and 4 above).
6. Close by talking about the power to decide.
“Today we practiced new skills. Just because you have a habit of
being passive doesn’t mean that’s the way you have to be. We can
choose how we act in our lives. We’re most likely to get what we
want if we are assertive.”
USA.
Photo: Advocating
Change Together

25
1. What did you see and hear that tells you a person is being assertive?
(or passive, or aggressive)
How did the person’s body look? (answers may include the following)
How did the person sound?
2. How do you think the person feels about herself (or himself)?
3. How do you think others see her (or him)?
4. What do you think would happen to a person who was passive
(or aggressive or assertive) all the time?
5. Did the person get what they wanted by being passive (or aggressive
or assertive)? Did they say what they wanted?
Passive: low energy,
head down, eyes down
Aggressive: standing
too close, tense body
posture, scowl on face
Assertive: good eye
contact, calm,
reasonable, direct
Passive: low voice, not
excited, not confident
Aggressive: loud voice,
excited, angry, pushy,
not respectful
Assertive: normal voice,
confident, open, calm
Passive: no control,
depressed, easily
swayed, down, sad
Aggressive: out of
control, mean, not
liked, angry
Assertive: in control,
happy, proud,
self-respect, calm
Passive: no respect,
pushover, unsure
Aggressive: scared,
want to stay away, want
to fight back, think the
person is out of control
and unreasonable
Assertive: respectful,
not a pushover
Passive: No? Aggressive: No? Assertive: will not
always get what you
want, but you have a
better chance
Be a coach
Once someone
agrees to be in the
role-play, help them
prepare. Take them
aside and briefly tell
them what the role
play is trying to show.
Tell them to over-do
it to make the point.
The more they
exaggerate the better!Passive: get depressed,
get taken advantage of,
low opinion of self
Aggressive: lose friends,
not respected, staff
would put on “behavior
program”, not happy,
anger would eat them
up
Assertive: has a better
chance of getting more
of what they want out
of life, happy life,
self-directed
How to be assertive
Discussion questions for after each role-play
USA.
Photo: Advocating
Change Together
Be aware that
what is respectful
behavior differs
between countries.

26
Role-play ideas
Getting health care
Actor: a person needing health care
Co-actors: the person’s friend and a nurse or
doctor
Scene: the local clinic
A person with a disability needs treatment for a
minor injury. The nurse looks only at the person’s
friend. The nurse asks the friend about the prob-
lem. The nurse does not ask the person who has
the problem. The person tries to talk anyway, but
the nurse keeps talking to the friend.
The teaser
Actor: a worker who is being teased
Co-actors: a worker who is teasing and two
workers who are watching
Scene: the workplace
A worker is busy doing her job. Another worker
comes up and starts teasing her. She says, “You
are slow.” Two other workers are watching. They
do not know what they should do. The teaser will
not stop the teasing.
The meeting
Actor: a person trying to speak at a meeting
Co-actor: a person who keeps interrupting
Scene: a community meeting
A person is trying to speak at a meeting about
buses. They want to tell how they need more
buses. They want to tell about how they can’t get
a job without a way to get there. It is their turn to
speak, but another person keeps interrupting.
Buying a shirt
Actor: a shopper
Co-actor: a sales person
Scene: a clothing store
A person is shopping in a clothing store. A sales
person has decided that one certain shirt would be
just right for the customer. The shirt is not what the
customer likes. It is also too babyish. The sales
person is really pushy.
We have rights
Actor: (you decide)
Co-actor: (you decide)
Scene: (you decide)
Create your own role-play. Choose one right.
Show how that right comes into everyday life.
Show how a person wants something but does not
get it. Keep it simple.
One small step
Actor: someone who uses a wheelchair
Co-actor: the manager of a store
Scene: a store
A person who uses a wheelchair likes to shop.
His favorite store is not accessible. There is a
small step in front of the door. So, the person
needs to have a friend along to help. Or he
must wait until a stranger comes along to
help. The person is meeting with the store
manager to talk about this human rights
problem.

27
GET TOGETHER•MAKE A PLAN•TAKE ACTION
Making Change Step by Step
As we learn about our rights, we will see changes we want to make. People with disabilities can work
together—step by step—to make those changes. Others can help, too. Here’s a true story about a
group in the United States.
This action took place in 2006 in Minnesota, USA.
1.
One person’s dream
The city buses were not running. There
was a bus strike. I could not get to my
job. I could not get to the store. I should
be able to get around. This is my right.
2.
Is it a good issue?
Others in my group
felt the same way. It
seemed like a problem
we could work on and
have success. We
decided to work
together to make
change.
3.
Get the facts
We found allies who could help us.
We gathered new information. Who
has the power to settle the strike. Is
transportation a right or a privilege?
Who is most affected?
4.
Plan action
We planned a meeting
with state leaders. We
planned a rally afterward.
Our message: Settle the
strike! We set a date. We
practiced what we would
say. Everyone in our group
would say something.
5.
Take action
We met as planned. We
explained the problem.
We told them how we
felt. We told them what
we wanted.
6.
Result
They listened. The TV
news covered our big
rally. The strike was
settled a few weeks later.
Our action made a
difference. Now the
buses are running. We
are able to get to work.
7.
Follow up
We keep talking to officials.
We tell them: If we can’t get
there, we’re not included.

28
We Have
Human Rights
A human rights handbook for people
with developmental disabilities
In 2007, the United Nations
passed a new law: people
with disabilities have the
same rights as everyone else.
We Have Human Rights is produced by the Harvard
Project on Disability, which is generously supported by
a grant from Foundation Open Society (Zug).
A human rights
handbook for people
with developmental
disabilities
We
Have
Human
Rights
We
Have
Human
Rights
To learn more about disability
rights, get this companion book:
Human Rights. Yes! is a human rights curriculum on
the rights of persons with disabilities. It was written
by people with a wide range of experience in
human rights and disability. It will be valuable to
human rights workers, advocacy groups, and people
working on human rights education.
www.humanrightsyes.org
• Digni ty • Ability to choose • Independence • Non-d iscrimination
Participation•Fullinclusion•Respectfordifference•Disabilityispartofeverydaylife•Equal
opportunity•Accessibility•Equalityofmenandwomen•Respect
forchildren•Dignity•Abilitytochoose•Independence•Non-discrimination•Participation
ISBN 978-1-60643-065-1

Incidents adversely affecting health and welfare.
OAC 5123:2-17-02
1

Objectives:
 Provide new and/or current staff/providers with
an awareness of the importance incident reporting
 Create awareness about abuse and neglect so staff
can identify and report information
 Educate staff on types of Unusual Incidents and
MUI’s
 Educate staff/providers on the procedures and
process of reporting incidents
 Educate staff/providers of roles and
responsibilities of providers, support
administrators, and investigative agent
2

The Rule:
 Establishes the requirements for
managing incidents adversely
affecting health or welfare.
 Implements a continuous quality
improvement process in order to
prevent or reduce the risk of harm to
individuals.
3

The Rule:
 The Purpose is to establish a system to:
 Report
 Investigate
 Review
 Remedy
 Analyze
4

Common Acronyms
 Provider: person giving services to eligible client.
 MAR: Medical Administrative Record (Med sheet
lists all med’s, dosages, and times given.)
 ASD: Autism Spectrum Disorders
 MR: Mental Retardation. (It is important to realize
this is seen as an offensive term by most
providers, SA’s and Individuals. It is recommended
you use Developmental Disability when
addressing a client or professional.)
 UI Unusual Incident
 MUI: Major Unusual Incident
 PPI Primary Person of Interest
 IA Investigative Agent
5

Definitions
Rule Reference: Page 1 (C )(2)
Agency provider is a provider, certified or licensed
by the department or a provider approved by the
Ohio office of medical assistance to provide
services under the transitions developmental
disabilities waiver, that employs staff to deliver
services to individuals and who may subcontract the
delivery of services. Agency provider includes a
county board while providing specialized
services.
6

Definitions
Rule Reference: page 2 (C)(10)
 Independent Provider (Replaces
Individual Provider)
 Independent provider means a self-
employed person who provides services
for which he or she must be certified
under rule 5123:2-2-01 of the
Administrative Code or approved by the
Ohio office of medical assistance and
does not employ, either directly or through
contract, anyone else to provide the
services.
7

Support Broker
SELF Waiver
Rule Reference: Page 11(G)(1)(e)
 Support broker for an individual
enrolled in the self-empowered life
funding waiver shall be notified of
MUI’s. New addition with the SELF
Waiver.
8

QMRP Language change
Rule Reference: Page 6(c)(18)
 Qualified intellectual disability
professional“ QIDP has the same
meaning as in 42 C.F.R. 483.430
(2012).
9

Summary of MUI rule changes
 Rule title to include MUI and UIs. The new title is
Addressing major unusual incidents and unusual
incidents to ensure health, welfare, and
continuous quality improvement.
 Changes to Protocols (A, B, and C category
investigations.)
 Peer-to-peer definition changes (Physical Abuse, Verbal
Abuse, Misappropriation). Clarifies the definition for greater
consistency
 Verbal Abuse definition changes
 Missing Individual Definition Changes
10

Summary of MUI rule
changes
 Strengthening of the UI process. More incidents will
be categorized as UI’s = assure process effectively
addresses these incidents.
 Revised communication and dispute resolution
opportunities (i.e., information, appeal) for
peer/guardian in a Peer-to-Peer case.
 Law enforcement notifications on criminal Peer-to-
Peer cases. Local conversations to assure
appropriate follow-up
 Law Enforcement and Attempted Suicide as an MUI –
even when individual is not being served
11

Summary of MUI Rule changes
 Known / Unknown Injury Changes
 Death- Suspicious or Accidental v.s. Natural
 UI Definition
 Health and Welfare
 Provider Notifications
 ICF Reporting Requirements
 Support Broker Self Waiver
 Peer to Peer Notifications
 Incident Report Requirements
 Quarterly to Semi Annual for MUI P T Analysis
12

Revisions emphasize…
 Improvements that focus on triaging
incidents based on severity
 Providing the right amount of safety,
verification and investigation
 Reducing unnecessary worry, time, and
effort on paper compliance that doesn’t
impact outcomes
13

Reporting Requirements
Rule Reference: Page 8(D)(3)(a-e)
 Reports regarding the following major unusual incidents
shall be filed and the requirements of this rule followed
only when the incident occurs in a program operated by a
county board or when the individual is being served by a
licensed or certified provider:
 (i) Medical emergency;
 (iii) Rights code violation;
 (iv) Significant injury;
 (v) Unapproved behavior support; and
 (vi) Unscheduled hospitalization.
14

Category A Category B Category C
Accidental or Suspicious
Death
Attempted Suicide Law Enforcement
Exploitation Medical Emergency Unscheduled
Hospitalization
Failure to Report Missing Individual Unapproved Behavior
Support
Misappropriation Death from Natural
Causes or disease
Rights code Violation Significant Injury
Neglect
Peer to Peer Acts
Physical Abuse
Sexual Abuse
Verbal Abuse
Prohibited Sexual
relations
15

Required reporting at all
times
MUI only when services
are provided
Attempted Suicide Medical Emergency
Law Enforcement Rights code violation
Physical, Sexual, Verbal
abuse
Significant Injury
Peer to Peer Acts. Unapproved Behavior
Support
Misappropriation Unscheduled
Hospitalization
Exploitation
Failure to Report
Prohibited sexual relations
Neglect
Death
16

Category Summaries
 All MUI’s require an investigation meeting
category A , B or C applicable
requirements of this rule.
 Category A Alleged Crimes (Police , CSB
and IA involvement)
 Category B Investigative Agent
 Category C (Format Requirements)
 Investigation categories may change
based on the information obtained A, B
and C.
17

Training
Rule Reference: Page 22 (P)(1)-(2)
 Agency providers and county boards shall ensure
staff employed in direct services positions are trained
on the requirements of this rule regarding the
identification and reporting of MUIs and UIs prior to
direct contact with any individual. Thereafter, staff
employed in direct service positions shall receive
training during each calendar year which shall include
annual training on the requirements of this rule
including a review of health and welfare alerts issued
by the department since the previous calendar year's
training.
18

Access To Records
Rule Reference: Page 22-(O)
 A county board or the department shall not review,
copy, or include in any report required by this rule a
provider's personnel records that are confidential
under state or federal statutes or rules, including
medical and insurance records, workers'
compensation records, employment eligibility
verification (I-9) forms, and social security
numbers. The provider shall redact any
confidential information contained in a record
before copies are provided to the county board
or the department. A provider shall make all
other records available upon request by a
county board or the department.
19

Oversight
Rule Reference: Page 22 F (N)
 (1) The county board shall review, on at least a
quarterly basis (not monthly), a representative
sample of provider logs, including logs where the
county board is a provider, to ensure that major
unusual incidents have been reported,
preventive measures have been developed, and
that trends and patterns have been identified and
addressed in accordance with this rule.
 The sample shall be made available to the
department for review upon request.
20

Rule Reference: Page 22- (N)(2)
 When the county board is a provider of
services, the department shall review, on a
monthly basis, a representative sample of
county board logs to ensure that major unusual
incidents have been reported and that trends
and patterns have been identified and
addressed in accordance with this rule. The
county board shall submit the specified logs to
the department upon request.
21

Unusual Incidents
Rule Reference: Pages 21 (M)(d)
 Requires the provider to investigate
unusual incidents, identify the cause
and contributing factors when
applicable, and develop preventive
measures to protect the health and
welfare of any at-risk individuals.
22

Unusual Incidents Cont.
Rule Reference: Page 21(M)(5)
 Independent providers shall complete an
incident report, notify the individual's
guardian or other person whom the
individual has identified, as applicable on
the day an unusual incident is discovered.
 Independent Providers will also maintain
a log of unusual incidents. Rule Reference: Page
21 (M)(8)
23

Rule Reference-Page18(L)(2)(a-j)
 Specific individuals involved in established trends
and patterns
 (i.e., five major unusual incidents of any kind within
six months,
 ten major unusual incidents of any kind within a
year, or other
 pattern identified by the individual's team);
 Specific trends by residence, region, or program;
 Previously identified trends and patterns; and
 Action plans and preventive measures to address
noted trends and patterns.
24

Analysis
Rule Reference-Page18(L)(2)(a-j)
All reviews and analyses shall be completed within
thirty calendar days following the end of the six-month
period. The semi-annual and annual analyses shall
contain the following elements:
 Date of review;
 Name of person completing review;
 Time period of review;
 Comparison of data for previous three years;
 Explanation of data;
 Data for review by major unusual incident category
type;
25

Analysis
Rule Reference: Page 18 (L)(1)
 All agency providers shall produce a semi-annual
(not quarterly) and annual report regarding MUI
trends and patterns which shall be sent to the
county board.
 The county board shall semi-annually review all
individual providers for MUI trends and patterns.
The semi-annual review shall be cumulative for the
first two quarters and include an in-depth analysis.
The annual review shall be cumulative for all four
quarters and include an in-depth analysis.
 Each review period shall include the preventive
measures taken to address the trends and
patterns.
26

PROVIDER NOTIFICATION OF
DODD CASE CLOSURES
 There is no longer a requirement that the
County Board provide notification to the
provider within 5 days of case being
closed.
27

Written Summaries
Rule Reference: Page15 (J)(1)
 No later than five working days following the
county board's, developmental center's, or
department's recommendation via the ITS
incident tracking system that the report be
closed, the county board, or developmental
center, or department shall provide a written
summary of the administrative investigation
of each category A or category B major
unusual incident…
28

Written Summaries
Rule Reference: Page 16 (J)(5)
 An individual, individual's guardian, other person
whom the individual has identified, or provider
may dispute the findings by submitting a letter of
dispute and supporting documentation to the
county board superintendent, or to the director of
the department if the department conducted the
administrative investigation, within fifteen
calendar days following receipt of the finding. An
individual may receive assistance from any
person selected by the individual to prepare a
letter and provide supporting documentation.
29

Written Summaries
Rule Reference: Page15-Section15(J)(1) continued
 including the allegations, the facts and findings,
including as applicable, whether the case was
substantiated or unsubstantiated, and preventive
measures implemented in response to the
incident to the following unless the
information in the written summary has
already been communicated.
30

Investigations
Rule Reference: Page 12 (H)(b)-(c)
 Based on the facts discovered during administrative
investigation of the major unusual incident, the category
may change. If a major unusual incident changes
category, the reason for the change shall be documented
and the new applicable category administrative
investigation procedure shall be used to investigate the
major unusual incident.
 Major unusual incidents that involve an active criminal
investigation may be closed as soon as the county board
ensures that the major unusual incident is properly
coded, the history of the primary person involved has
been reviewed, cause and contributing factors are
determined, a finding is made, and prevention measures
implemented. Information needed for closure of the major
unusual incident may be obtained from the criminal
investigation.
31

Investigations
Rule Reference: Pages 12(H)(2)(a)
 All major unusual incidents require an administrative
investigation meeting the applicable investigation
procedure requirements established in appendix A,
appendix B, or appendix C to this rule unless it is not
possible or relevant to the administrative
investigation to meet a requirement under this rule,
in which case the reason shall be documented.
Administrative Investigations shall be conducted and
reviewed by investigative agents.
 The department or county board may elect to follow
the investigation procedure for category A major
unusual incidents for any major unusual incident.
32

Peer to Peer Notifications
Rule Reference: Page 11(G)(4)
 Notification shall be made to the
individuals, individuals' guardians, and
other persons whom the individuals
have identified in a peer-to-peer act
unless such notification could
jeopardize the health and welfare of an
individual involved.
33

(E) Alleged Criminal Acts
 Immediate reporting to law enforcement
 Allegations of Abuse including
Misappropriation and Neglect which may
constitute a criminal act
 The county board ensures notification has
been made
34

(F) Abused or Neglected Children
 Allegations of Abuse or Neglect per Ohio
Revised Code 2151.03 and 2151.031
 Under the age of 21
 Report to local public children’s agency
 The county board shall ensure reports
have been made
35

Reporting Alleged criminal
acts cont…
Rule Reference: Page 10(E)(3)
 The department shall immediately report
to the Ohio state highway patrol, any
allegation of physical abuse, sexual abuse,
verbal abuse, misappropriation,
exploitation, neglect, failure to report, or
peer-to-peer act occurring at a
developmental center which may constitute
a criminal act. The department shall
document the time, date, and name of
person notified of the alleged criminal act.
36

Reporting alleged Criminal acts
Rule Reference: Page 10 (E)(2)
 The provider shall immediately report to the law
enforcement entity having jurisdiction of the location
where the incident occurred, any allegation of
physical abuse, sexual abuse, verbal abuse,
misappropriation, exploitation, neglect, failure to
report, or peer-to-peer act which may constitute a
criminal act. The provider shall document the time,
date, and name of person notified of the alleged
criminal act. The county board shall ensure that the
notification has been made.
37

Reporting alleged Criminal acts
Rule Reference: Page 10(E)(1)
 Reporting of alleged criminal acts
Nothing in this rule relieves mandatory reporters of the
responsibility to immediately report to the intermediate care
facility administrator or administrator designee, allegations of
mistreatment, neglect or abuse, and injuries of unknown source
when the source of the injury was not witnessed by any person
and the source of the injury could not be explained by the
individuals and the injury raises suspicions of possible abuse or
neglect because of the extent of the injury or the location of the
injury or the number of injuries observed at one particular point in
time or the incidences of injuries over time pursuant to 42 C.F.R.
483.420(d)(2).
38

Reporting MUI’s on Person
served
 Abuse, Neglect, Exploitation, Misappropriation, Death,
Prohibited Sexual Relations, Law Enforcement, Attempted
Suicide, Peer to Peer and Failure to Report
 Regardless of where the incident occurred
 Follow all rule requirements
 Remaining categories (All other MUI’s) when:
 Incident occurs in program operated by the county board
 OR
 When the individual is being served by a licensed or
certified provider
 Follow all requirements
39

(D)(5) Immediate to 4 Hour
Reporting
 Provider or county board as a provider
 Using county board identified system for
MUIs
 Report incidents or allegations of:
○ Abuse
○ Neglect
○ Exploitation
○ Misappropriation
○ Suspicious or accidental death
○ Media inquiries
40

(D)(3) Upon Identification or Notification of
MUI, Provider or County Board Shall:
 Take immediate actions to protect all at
risk individuals which shall include:
○ Immediate or ongoing medical attention as
appropriate
○ Remove employee from direct contact until
determined unnecessary
○ Other measures as necessary
 The Department shall resolve any
disagreements
41

(D)(10)
 County board shall have a system
available 24-7 to receive and respond to
reports.
 MUI notification numbers:
 During business hours (8am–4:30pm M-F)
740-201-3608 and 740-201-5812
 After hours (4:30pm-8am), weekends, and
holidays: Helpline 211 or1-800-684-2324. Ask
to speak with DCBDD On Call.
42

(G)(1) Notifications Upon Awareness
of an Incident
 To be made by provider or county board as a
provider
 Made the same day
 Include immediate actions taken
 DODD wants to see time of notification on the
IRF. (Recommend you add a time slot)
 Guardian, advocate, or person identified
 SSA for individual
 Licensed or certified residential provider
 Staff or family in the home
43

(G)(2)-(4)
 Notifications or effort to notify shall be
documented
 The county board ensure notifications have
been made
 Do not notify the PPI, PPI’s spouse, or
significant other
 Not needed if the report came from person
to be notified or in the case of death where
the family is already aware
44

(D)(4) County Board Upon
Notification Shall:
 Ensure reasonable measures are
appropriate
 Determine if additional measures are
needed
45

(G)(5) Notification to Providers When
PPI Works for Multiple Providers
 The Department makes these
 Alleged crimes
 The other provider determines if steps are
needed to ensure health and safety
 Notification of case disposition
 Providers, county boards, developmental
centers to notify the Department if the PPI
works elsewhere in the system
46

(D)(6) Submit Written Incident Report by
3:00 p.m. the Next Working Day
 Agency providers, individual providers, and
county boards as providers
 Department prescribed format: DCBDD
IRF is included in training packet
 Fax #: (740) 201-3608 or (740) 201-5812
Attn: MUI Investigative Agents
 DCBDD IA and SA must have report by
3pm the next working day – do not use
postal service or inter-office mail; if fax is
not available, hand delivery is suggested
47

(K)(1) Written Procedure Implemented for
Internal MUI Review
 County boards and agency providers
 Include responsibility for reasonable
steps to prevent
48

(K)(2) Development of Preventive
Measures
 Team including county board and provider
 Address causes and contributing factors
 Determine reasonable steps
 Plans of Prevention/Correction are due in
their entirety, 21 days from the date the IDF
was mailed
 In circumstances of few supports –
implement what is reasonably possible.
49

(D)(1) Any Person with DD Not
Served
 Report possible Abuse including
Misappropriation or Neglect
 To local law enforcement and the county board
OR
 Public Children’s Service Agency and county
board
 Entry page on ITS
50

(H) General Investigation
Requirements
51

(H)(1)
 All MUIs require an investigation
meeting the requirements in Appendix A
or B
 Certified investigative agents shall
conduct the investigations
52

(H)(2)
 The county board shall have at least one
 investigative agent. The county board may
 contract with a person or a government
 entity.
 Must be certified
 Must receive annual Department-approved
training
53

(H)(5)
 Agency Provider may conduct HR
investigations from which information
except for interviews may be used
 The investigative agent shall conduct all
interviews for MUIs unless Law
enforcement or Children’s services is
investigating
 May obtain assistance with interviewing an
individual
54

(H)(6)
 Commence an investigation immediately
but no later than 24 hours for:
○ Abuse, Neglect, Exploitation, or Misappropriation
○ Rights Code
○ Suspicious or Accidental Death
○ Prohibited Sexual Relations
○ One determined by the county board
55

(H)(7)
 For other MUIs – Commence no later
than 3 working days after identification
or notification.
 Decision based upon:
 Initial information received
 Consistent with health and safety of at risk
persons
56

(H)(10)
 When an agency provider conducts an
internal review of an incident, (HR
investigation) and an MUI has been filed
 The results of the review including
statements and documents go to the
county board within 14 calendar days of
awareness of the incident
57

(H)(11)
 All DD and DODD Provider employees
shall cooperate with any administrative
investigation
 Providers and the county board shall
respond to information within timeframes
requested
58

(H)(12)
 The investigative agent submits the
report of investigation for closure in ITS
within 30 working days.
 Extensions may be granted by DODD
based on established criteria.
59

(I)(1) Dept directed investigations
 The Department shall conduct the MUI
investigation when the allegation is against:
 Superintendent of a county board or
developmental center
 Executive Director or equivalent of a Counsel of
Government
 Management employee who reports to the
Superintendent or Executive Director
 An investigative agent
 An SSA
 An MUI contact for a county board
 A current member of a county board
60

(I)(1) Continued
 Known relationship with A-G when it may
present a conflict of interest or the
appearance of a conflict of interest
 County board employee who is alleged to
be responsible for individual’s death, has
committed sexual abuse, engaged in
prohibited sexual activity, or committed
physical abuse or neglect resulting in
emergency room treatment or
hospitalization.
61

(J)(1)(2)
 Those receiving written notice:
 Individual or individual’s guardian or
advocate
 Licensed or certified provider and provider at
the time of the incident
 SSA or person selected to coordinate
services
 Not to family in case of death unless
requested
62

(J)(3)
 Written summary not provided to PPI,
PPI’s spouse, or significant other
 A reasonable attempt to notify the PPI of
disposition shall be made no later than 5
working days following case closure
63

UI Definition
 Unusual incident means an event or occurrence involving
an individual that is not consistent with routine operations,
policies and procedures, or the individual's care or service
plan, but is not a major unusual incident.
 Unusual incident includes, but is not limited to: dental
injuries; falls; an injury that is not a significant injury;
medication errors without a likely risk to health and welfare;
overnight relocation of an individual due to a fire, natural
disaster, or mechanical failure; an incident involving two
individuals served that is not a peer-to-peer act major
unusual incident; and rights code violations or unapproved
behavior supports without a likely risk to health and welfare.
64

UI Definition
 Unusual incident includes, but is not limited to: dental
injuries; falls; an injury that is not a significant injury;
medication errors without a likely risk to health and welfare;
overnight relocation of an individual due to a fire, natural
disaster, or mechanical failure; an incident involving two
individuals served that is not a peer-to-peer act major
unusual incident; and rights code violations or unapproved
behavior supports without a likely risk to health and welfare.
65

Minor Injuries
 lacerations, scrapes, contusions or
 discolorations of known origin, minor burns,
rash, minor, dental injuries
 recreational/work related injuries, falls;
peer-to-peer incidents that are not MUIs;
 overnight relocation of an individual due to
fire, natural disaster, or mechanical failure;
66

Behavioral episode
 a physical or verbal outburst of an eligible
individual that does not require physical
intervention.
 Concerning Peer to Peer interaction that is not an
MUI
 Unapproved Behavior Supports without a risk to
health or welfare. Ex. Taking radio away.
67

Self-medication errors
 an individual who administers their own
medication (as outlined in their ISP) fails
to administer the medication as
prescribed (with no adverse effects).
68

Atypical behavior
 an occurrence where an eligible
individual displays behavior that is
unusual or displays a typical behavior
increasingly which causes concern for
health and safety.
69

A Major Unusual Incident
(MUI) is:
 The alleged, suspected or actual occurrence of an
incident when there is reason to believe the health
or welfare of an individual may be adversely
affected.
 Or when an individual may be placed at a
reasonable risk of harm.
 If such individual is receiving services through the
DCBDD service system or will be receiving such
services as a result of the incident.
 Major Unusual incidents directly relate to and are
written about the individual receiving services
that the incident happens to. Reports are about
the victim, not the perpetrator
70

MUI’s include:
 Abuse
 Attempted suicide
 Death
 Exploitation
 Failure to report
 Significant injury
 Law enforcement
 Medical emergency
 Misappropriation
71

MUI’s include:
 Missing individual
 Neglect
 Peer-to-Peer acts
 Prohibited sexual relations
 Rights code violation
 Unapproved behavior support
 Unscheduled hospitalization
72

Category Summaries
 All MUI’s require an investigation meeting
category A , B or C applicable
requirements of this rule.
 Category A Alleged Crimes (Police , CSB
and IA involvement)
 Category B Investigative Agent
 Category C (Format Requirements)
 Investigation categories may change
based on the information obtained A, B
and C.
73

Category A Incidents
 Require 4 hour notification to DCBDD
 Require immediate Notification to Law
Enforcement or Children Services in
cases of suspected child abuse (up to
age 21 for DCBDD Eligible individuals).
 Require immediate notification to Law
Enforcement for criminal cases.
74

 Cases in which Police, CSP, or IA may be involved
in the investigation
 Accidental or Suspicious Death
 Exploitation
 Failure to report
 Misappropriation
 Neglect
 PTP act
 Physical Abuse
75

 Prohibited Sexual Activity
 Rights Code
 Sexual Abuse
 Verbal Abuse
76

Failure to report:
 When a person has reason to believe that
an individual has suffered or faces
substantial risk of suffering from any
wound, injury, disability, or condition of
such a nature as to indicate abuse or
neglect. Including misappropriation.
77

Failure to report:
 And that person does not immediately
report the incident to:
 Law enforcement
 Children Services
 The DCBDD
 The Omission of the reporting is itself the
MUI and must be reported immediately.
78

Abuse:
 Physical:
 use of physical force
 That can be expected to or does result in
physical or serious physical harm.
 Including but not limited to:
○ Hitting
○ Slapping
○ Pushing
○ Throwing objects at an individual
○ Prone Restraints
79

Abuse:
 Sexual Abuse:
 Unlawful sexual conduct or sexual contact
 Verbal Abuse:
 Purposefully using words, gestures or other
communicative means to threaten, coerce,
intimidate, harass, or humiliate an
individual
80

Misappropriation:
 Depriving, defrauding, or
otherwise obtaining the
real or personal property
of an individual by any
means prohibited by the
Ohio Revised Code.
 It is a felony to steal even
one penny!
81

Exploitation:
 The unlawful or improper act of using an
individual’s resources for monetary or
personal benefit, profit, or gain.
82

Neglect:
 When there is a duty to do so, failing to
provide an individual with:
 Treatment
 Care
 Goods
 Supervision
 Services necessary to maintain the health or
safety of the individual.
83

Neglect:
 Consideration must be given to whether
there is reasonable risk to health and
safety.
 Neglect includes patient endangerment
which means an DD caretaker has
created a substantial risk to the health
or safety of an individual.
84

Rule Reference: Page 4(a)(vi)
 (vi) Peer-to-peer act. Peer-to-peer act
means one of the following:
 (a) Exploitation
 (b) Theft…The $ limit for an MUI
investigation regarding peer to peer was
raised from $10 to $20.
Peer To Peer
85

Peer To Peer
Rule Reference: Page 4(a)(vi)(c)
 Physical act that occurs when an individual is
targeting, or firmly fixed on another individual such
that the act is not accidental or random. The
incident results in an injury that is treated by a
physician, physician assistant, or nurse
practitioner. Allegations of one individual choking
another or any head or neck injuries such as
bloody nose, a bloody lip, a black eye or other
injury to the eye, shall be considered major
unusual incidents.
86

Peer To Peer
Rule Reference: Page 4 (a)(vi)(c)
 Minor injuries such as scratches or
reddened areas not involving the head or
neck shall be considered unusual
incidents and shall require immediate
action, a review to uncover possible
cause/contributing factors, and
prevention measures.
87

Peer to peer
Rule Reference: Page 4 (a)(vi)(e)
 Verbal act which means the use of
words, gestures, or other communicative
means to purposefully threaten, coerce,
or intimidate the other individual when
there is the opportunity and ability to
carryout the threat.
88

Peer to Peer
Law enforcement
Notifications -discussion
 Notifications shall be made to law
enforcement or CSB as appropriate
when an alleged crime has been
committed. (The change in peer to
peer physical act definition will help
assure that appropriate notification to
LE and CSB occurs regarding peer to
peer MUI’s.)
89

Prohibited Sexual Relations:
 An DD employee engaging in consensual
sexual conduct or having consensual sexual
contact with an individual who is not the
employee’s spouse, and for whom the DD
employee was employed or under contract
to provide care at the time of the incident
and includes persons in the employee’s
supervisory chain of command.
90

Rights Code Violation:
 Any violation of the rights enumerated
in section 5123.62 of the Revised Code
that creates a reasonable risk of harm to
the health or safety of an individual.
91

Category B Incidents
 Required to report the same day
 Required to implement immediate plan of
correction to ensure health and welfare.
 Attempted Suicide
 Medical Emergency
 Missing Individual
 Death from natural causes or disease
 Significant Injury (Combined known/unknown
injury
92

Attempted Suicide
 Attempted Suicide:
 A physical attempt by an
individual that results in
emergency room
treatment, in-patient
observation, or hospital
admission.
93

Death MUI’s
 Natural Causes, medical condition or
disease.
 IA follows Coroner lead.
94

MISSING INDIVIDUAL
Rule Reference: Page 5 (b)(iv)
 An incident that is not considered neglect and an
individuals whereabouts after immediate measures
taken are unknown and the individual is believed to
be at or pose an imminent risk of harm to self or
others.
 An incident when an individual’s are unknown for
longer than the period of time specified in the
individuals service plan that does not result in
imminent risk of harm to self or others shall be
investigated as an unusual incident.
95

Medical Emergency:
 An incident where
emergency medical
intervention is required
to save an individual’s
life:
 Heimlich maneuver
 CPR
 IV fluid for
dehydration
 Epi-Pen
96

Known / Unknown Injury
(Significant Injury)
Rule Reference: Page 6 (b)(v)
 Significant injury. Significant injury means an
injury of known or unknown cause that is not
considered abuse or neglect and that results in
concussion, broken bone, dislocation, second
or third degree burns or an injury that requires
immobilization, casting, or five or more sutures.
Significant injuries shall be designated in the
incident tracking system as either known or
unknown cause.
97

Category C Incidents
 Law Enforcement
 Unapproved Behavior Supports
 Unscheduled Hospitalizations
98

Law Enforcement:
 Any incident that
results in the
individual being
charged,
incarcerated, or
arrested.
 New: Required even
if client is not
receiving services.
99

Unapproved Behavior
Support
Rule Reference: Page 6 (c)(ii)
 “Unapproved behavior support” is
an intervention that is prohibited by paragraph
(J) of rule 5123:2-1-02 of the Administrative
Code or an aversive strategy implemented
without the approval by HRC or BSC or without
informed consent, that results in a likely risk to
health and welfare. An intervention that is
prohibited by paragraph (J)of rule 5123:2-02
of the O.A.C. and does not likely pose a
likely risk to health and welfare shall be
investigated as an unusual incident.
100

Unscheduled Hospitalization:
 Any hospital admission that
is not that is not scheduled
unless the hospital
admission is due to a
condition that is specified in
the ISP or nursing care plan
indicating the specific
symptoms and criteria that
require hospitalization.
101

Appendix C and the SSA
 Appendix C cases are Law Enforcement, Unscheduled
Hospitalizations and Unapproved Behavior Supports.
These are the only 3 categories where the Appendix C
Protocol and form can be used.
 Appendix C forms can be completed by the SSA and the
Provider who was providing services to the individual
when the incident occurred.
 The IA or MUI Contact will enter the information from
Appendix C form into ITS.
 The IA will be responsible for reviewing it and ensuring
information is complete, incident is properly coded and
meets the requirements of rule.
102

Overview of Individual Options
and Level One Waivers
 What is a Waiver?
A waiver is a part of a state’s Medicaid State Plan. It is an exception to the Medicaid
legislation that is granted to a state by the federal Centers for Medicare and Medicaid
Services allowing the state to waive some of the requirements of Medicaid. To gain approval,
waivers must be cost effective, efficient, and consistent with the objectives of the Medicaid
program. Waivers serve people who are elderly, who have mental retardation and/or
developmental disabilities and/or who have physical disabilities. The purpose of waivers is to
keep people living in their own homes rather than moving to more expensive options such as
nursing homes or intermediate care facilities.
Waivers are one of the optional benefits that states may choose to offer through the Medicaid
State Plan as an alternative to institutional care. Through this option, Ohio’s State Plan offers
Home and Community-Based Services Waivers (HCBS). These waiver programs provide
alternatives to living in facility-based care settings such as a nursing home or intermediate
care facility for the mentally retarded (ICFMR). Because this type of care can be costly, Ohio's
Medicaid program can help Medicaid-eligible Ohioans pay for their long-term care.
112

 Waiver programs were first authorized in 1981 under section 1915c of the Social
Security Act. The first time these waivers became available in Ohio was July 1991.
This first waiver was called the Individual Options waiver and is one of the two
waivers available today in Ohio. The second waiver to become available is the
Level One waiver that began in 2003. Waivers are available on a limited basis,
based on available funds and meeting eligibility requirements.
 Since waivers are a part of Medicaid, they are administered by the same agencies
as the overall Medicaid program. At the Federal level, Medicaid is administered by
the U.S. Department of Health and Human Services, Centers for Medicare and
Medicaid Administration (CMS). In Ohio, the Medicaid program is administered by
the Department of Jobs and Family Services (ODJFS). Other agencies administer
specific Medicaid programs through interagency operating agreements with ODJFS.
ODJFS applies for all HCBS waivers and sets parameters for waiver programs.
113

 The ODDD Eligibility Unit, Division of Medicaid Administration and
development processes all waiver applications and determines level of care
for HCBS waivers. County Boards of DD administer HCBS waivers as
defined in ORC Section 5126.055. There is an annual renewal process for
continued waiver services and individuals enrolled on waivers must meet
Medicaid eligibility requirements every month.
 Before waiver services can be provided an authorization for waiver
services must be secured. This process authorizes the ISP and associated
payment. Why is authorization of waiver services important? The result
specifies how much of what services an individual will receive, when, and
according to what parameters. The process associated with the
authorization of waiver services includes allocation of state and local
resources for the reimbursement of services provided.
114

 Individuals who have been approved to receive waiver services will choose their service
provider through the Free Choice of Provider Process. It is the responsibility of the service and
support administrator to assist individuals in the selection of service providers. Service
providers must be certified through the ODDD. Per 5123:2-9-11 of the Ohio Administrative
Code, which has details about the Free Choice of Provider Process, “An individual shall be
responsible for making all decisions regarding free choice of providers unless the individual
has a guardian, in which case the guardian shall be responsible for making such decisions.
Individuals, including those with guardians, have the right to participate in decisions regarding
the free choice of providers. An individual who does not have a guardian or an individual's
guardian may designate another person, including a member of the individual's family, to
participate in the process of making decisions regarding free choice of providers…”
 Other details available in this rule include such areas as the requirement for ODDD to
maintain a current provider list and details on the requirement that SSAs must utilize this list to
assist individuals when selecting providers.
115

Individual Options Waiver
(IO Waiver)
 Waiver services provide certain Ohio citizens the training and support that they need in
addition to the Medicaid State Plan services that they can receive. Medicaid State Plan
services are often called ‘Medicaid Card’ services and include prescription medication,
hospital care, physician visits and other healthcare services.
 Waiver services allow a limited number of people who meet certain conditions to stay in their
own homes and receive services there and in the community instead of living in an
Intermediate Care Facility for the Mentally Retarded (ICF/MR). To receive IO waiver services,
an individual must be eligible for Medicaid and have an ICF/MR Level of Care approved by
the Department of Job and Family Services.
 As of 2008, all 88 counties have individuals enrolled on the IO waiver with approximately
12,000 individuals enrolled across the state.
 The average cost in 2008 of Individual Options waiver services per person is approximately
$47,000 while the
average cost of ICF/MR services per person is approximately $90,000. Not only does an
individual benefit from staying in their own home, but a significant cost savings can be gained.
116

 Service and Support Administrators (SSAs) who work in each county board of
mental retardation and developmental disabilities will assist individuals to apply for
Medicaid and complete their Level of Care paperwork. Through the individual
planning process, with help from the SSA and input from professionals and service
providers, each individual, his/her family and advocates will determine which
services are needed, how often they are needed, where they will be provided and
who will provide them.
 The funding ranges and payment amounts that will be available to an individual for
the IO waiver funded portion of these services are based on the needs of each
individual as measured by the Ohio Developmental Disabilities Profile (ODDP). The
Acuity Assessment (AAI) is also used to determine a waiver budget amount if an
adult needs out of home day services through the waiver.
117

The IO waiver provides the
following services:
 Adult Day Services
These services are available to individuals who are not eligible to receive
educational services. Adult Day Services include:
 Adult Day Support
These services are provided separate from any home or facility in which an individual
resides, focus on non-work activities, and include five components:
 Assessment -- may be formal or informal, for the purpose of developing an Individual Service Plan
(ISP)
 Personal care -- includes personal hygiene, eating, communication, mobility, toileting, and dressing
 Skill reinforcement -- includes implementing behavioral intervention plans, and help with the use of
communication and mobility devices
 Training in self-determination -- includes developing self-advocacy skills and acquiring skills that
enable an individual to become more independent
 Recreation and leisure -- includes supports identified in the ISP that are therapeutic, and help to
develop and maintain social relationships and family contacts
118

 Vocational Habilitation
These services teach and reinforce concepts related to work
such as:
 * Responsibility
 * Attendance
 * Task completion
 * Problem Solving
 * Social Interaction
 * Motor skill development
 * Safety
119

 Supported employment
 Supported Employment – Community
 This service provides job coaches, supervision and training to help individuals
find and keep paying community jobs at places where persons without
disabilities are employed and to work side-by-side with them.
 Supported Employment – Enclave
 This service provides job coaches, supervision and training to help individuals
who work as a team to find and keep paying jobs at one or more work sites
of the ‘host’ community business.
 Non-Medical Transportation
This service pays for transportation needed by an individual to get to and from
places where he/she receives Supported-Employment – Community, Supported
Employment – Enclave, Adult Day Services and/or Vocational Habilitation
waiver services.
120

 Environmental Accessibility Adaptations
 This service includes changes to the individual’s home that help him/her to be more
independent. The modifications may include widening doorways, building ramps into
the home, changing bathrooms for individuals who use wheelchairs or other aids to
walk, and installing special electric or plumbing changes needed to operate medical
equipment.
 Home Delivered Meals
 Preparation and delivery of up to two meals each day, seven days per week is
provided for individuals who are unable to make their own meals or get healthy
meals for themselves in some other way.
121

 Homemaker/Personal Care
Services are provided to increase the independence of the individual within his/her home or
the community and may include:
 Basic personal care and grooming such as bathing, hair care and help dressing;
 Assisting the individual going to and/or using the bathroom;
 Help with household chores for the individual, such as changing bed linens and doing the
laundry, so the individual remains in good health and is comfortable;
 Helping the individual take his/her medication or perform health-related tasks that have
been delegated by the individual’s physician and a licensed nurse;
 Helping the individual to prepare shopping lists, to make meals, to shop in the community
for food and clothing;
 Assisting the individual to go to medical appointments, to use community services, to take
walks and participate in recreational activities inside and outside the home;
 Cooking meals with the individual or for the individual;
 Assisting the individual to get to and from work and other vocational activities;
 Running errands on behalf of the individual, such as picking up medication from the drug
store.
122

 Interpreter Services
People who provide this service help the individual to communicate his/her
messages and feelings and understand the messages of others.
 Nutrition Service
A nutritionist provides direction to individuals who are at risk because they a not
eating the right kinds of foods to stay healthy. The service can be used to prepare
a plan for healthy eating and can also be used to teach the individual, family or
others who help with meals.
 Respite Care
Services are provided to individuals for a short period of time in an ICF/MR and/or
other home licensed by the Department of DD in order to give persons who care for
them a break. Respite services are also available when caregivers are unable to
provide care because of their illness or absence
123

 Social Work Counseling
Professional help is provided to assist individuals and their families to solve
problems and gain social skills that will help the individual to have a better life in
the community.
 Specialized Adaptive or Assistive Equipment and Supplies
Services include devices, controls, appliances, supplies and/or other equipment that
an individual needs to do everyday activities or to communicate his/her needs. The
waiver pays for items that cannot be paid for through the Medicaid State Plan.
 Supported Employment – Adaptive Equipment
Payment can be made to buy or modify equipment that will be owned by an
individual who is receiving Supported Employment – Community or Supported
Employment – Enclave and that the individual needs to get and/or keep his/her
job.
 Non-Medical Transportation
Payment can be used to help individuals get to and from waiver services or other
community services, activities or resources.
124

Level One Waiver
 The Level I Waiver is for people with developmental disabilities. Like the IO
waiver, this waiver is also intended to allow people to stay in their own
homes rather than live in an ICFMR.
 This waiver is for people who require the care given in an Intermediate
Care Facility for the Mentally Retarded (ICFMR) but want to live at home
and who have a network of families, friends, neighbors and professionals
who can safely and effectively provide the needed care.
 The cost for this help cannot be more than the Level I Waiver allows.
125

 Covered services include:
 Homemaker/Personal Care
Homemaker/Personal Care is provided in a person’s home and helps a person with daily living activities such
as personal hygiene, dressing and eating.
 Institutional Respite/Informal Respite
Respite Care is support on a short-term basis for the person who receives the waiver to give family members a
break.
 Transportation
Transportation enables people on the waiver to travel to waiver and community services, activities and
resources. Whenever possible, family, neighbors, friends or community agencies that can provide the
Transportation without charge will be used.
 Personal Emergency Response Systems
A Personal Emergency Response System is an electronic device that a person with disabilities uses to get help in
an emergency. For example, the system may be a portable “help” button connected to a person’s phone that is
programmed to send a signal to a response center when the “help” button is activated. Trained professionals
staff the response center.
126

 Specialized Medical Equipment and Supplies
 Specialized Medical Equipment and Supplies include devices, controls or appliances that allow people to do daily living
activities or to help them communicate; items necessary for life support and the supplies and equipment necessary for
upkeep; and durable and non-durable equipment that is not paid for by the Medicaid State Plan (Medicaid card).
 Environmental Accessibility Adaptations
 These are changes to a home that enable a person to function with greater independence.
 Emergency Assistance
 Emergency Assistance provides increased levels of any covered service in crisis situations except for Informal Respite.
Emergency situations include involuntary loss of home for any reason including legal action, loss of caregiver including
death of a caregiver or changes in the caregiver’s mental or physical status that makes them unable to do their duties,
abuse, neglect or exploitation of the person, health and welfare conditions that pose a serious risk of immediate harm or
death to the person, and significant changes in the emotional or physical condition of the person that requires more
support than the current caregiver can provide.
 Day Habilitation
 This is used when people go to workshops to increase independence. A wider selection of options is now
available under Adult day Services.
 Adult Day Services (Same as those described under the IO Waiver)
127

The Ohio Developmental Disabilities Profile
(ODDP) the Acuity Assessment (AAI)
 The Ohio Developmental Disabilities Profile (ODDP) is a standardized assessment has been
tested for reliability and consistency and has been designed for predictability related to
needs and circumstances for waiver services.
The ODDP is used to determine the funding ranges and payment amounts that will be
available to an individual for the IO waiver. It assigns a score that corresponds to the person’s
needs and circumstances related to waiver services, links an individual to a funding range, and
determines a range of funding for an individual’s residential services. It has been designed to
predictably assess the relative needs and circumstances of the individual as compared to
others. The ODDP scoring methodology enables similarly situated individuals to access
comparable services under the waiver on a statewide basis.
The ODDP is a clinical assessment tool that captures the current circumstances of an individual
and it collects a subset of information about a person’s needs and circumstances. It is NOT a
comprehensive functional assessment. The ODDP must be revised periodically to continue to
reflect the current needs of an individual and whenever there is a significant change in life
circumstances such as a change in living arrangement, a new diagnosis or maintenance
medication, a change in the person’s health status, a change in level of independence, or a
change in natural supports or voluntary care-giving.
128

 The Information gathered for the ODDP can come from a variety of sources including the
individual, people who know the individual well, or written records. The information needs to
be reliable and comprehensive.
To assure consistency across assessors and to assure that all assessors obtain the same result
for same circumstance, staff who administer the ODDP must be trained and authorized in the
use of the tool by the Ohio Department of Mental Retardation and Developmental Disabilities
(ODDD).
The Acuity Assessment (AAI) is a standardized instrument used to assess the relative needs and
circumstances of an individual compared to other adults in a non-residential setting when
receiving one or more of the Adult Day waiver services. A score is determined through this
assessment and is used to calculate the annual funding limitation available to an individual to
access one or more of the Adult Day waiver services and for non-medical transportation
services.
The AAI is used to determine groupings/staff intensity ratios. Once an individual is assigned to
a group, budget limitations, payment rates and the level of staff needed for Adult Day
services can then be determined. It takes approximately 10-15 minutes to complete this
assessment.
129

 The informant used to complete the assessment is the person who can best report the
individual’s needs and circumstances in a non-residential setting. This can be the
individual his or her self, a provider of related services, a parent or other family
member, a guardian, an advocate, or other appropriate persons.
SSAs who have been trained in the use of the instrument, gather the information to
complete the assessment then will submit the completed document to the ODDD
electronically.
For individuals receiving Medicaid waiver services the SSA must annually submit a
request for an ICFMR level of care re-determination to the Ohio Department of DD
to document the continued need for an ICF/MR level of care.
Staff members who administer the AAI must also be trained and authorized in the
use of the tool by the ODDD.
130

An Overview of Determining
Budgets for Waiver Services
 Historically rates for waiver services were negotiated with private providers and
there was no cap for the IO waivers. This created a wide variation in rates paid for
like services. This is no longer the case. Following is a brief overview of how rates
are established and what waiver funds are available to eligible individuals.
Level One Waivers
 Level One Waiver services have a rate assigned for each type of service and each year an individual
can use any combination of Homemaker/Personal Care, Informal Respite, Institutional Respite, or
Transportation up to a combined total of $5000.
 In addition, every three years, up to $6,000 total can be spent for Personal Emergency Response
Systems, Specialized Medical Equipment and Supplies and Environmental Accessibility Adaptations. The
first two cannot exceed $2,000 each, but the Environmental Accessibility Adaptations can utilize the
entire amount (but would leave no funds for the other two.)
 Finally, every three years, starting from the individual’s initial date of enrollment, up to $8,000 can be
used for emergency assistance.
 Adult Day Services generates a separate dollar amount that can be used in addition to the amount
allocated for other Level One waiver services. The process for determining payment for adult day
services is clearly delineated in 5123:2-9-19 of the Ohio Administrative code.
131

 Level One Summary:
Annually: Up to $5,000 for Homemaker/Personal Care, Respite, and/or Transportation
Every 3 Years: Up to $6,000 for Emergency Response, Medical Equipment Supplies, and/or
Environmental Adaptations
Every 3 Years: Up to $8,000 for Emergency Assistance
Annually: For Adult Day Services, fifteen minute unit rates and daily rates vary depending on
the county cost of doing business factor and staff intensity ratios as determined by the ODDD
Acuity Assessment. This is then calculated into a budget limitation amount ranging from
approximately $9,000 to $30,000 per person. The transportation rate is a per mile rate
determined by the county cost of doing business factor. Transportation budget limitations
range from approximately $8,800-$9,600.
132

 IO Waivers
For Adult Day Services funded through the IO waiver, the rates and budget limitations are set in the same
way as it is set for the Level One waiver.
For other IO waiver funded services, to ensure statewide accountability and equity in the delivery of waiver
services, the waiver reimbursement methodology for individuals enrolled on the IO waiver will include two
basic components: a standardized assessment tool (ODDP) which will link individuals to an assigned funding
range and establishment of uniform provider rates.
The funding ranges and payment amounts that will be available to an individual for the IO waiver are
based on the needs of each individual as measured by the Ohio Developmental Disabilities Profile (ODDP).
The Acuity Assessment Instrument (AAI) is also used to determine a waiver budget amount if an adult needs
out of home day services through the waiver.
Each individual is assigned a funding range based on his/her ODDP score (Ohio Developmental Disabilities
Profile score). When completed statewide, the ODDP allows individuals with similar needs to access
comparable waiver services throughout Ohio. An Individual Service Plan is then developed. The ISP process
identifies the actual services needed by the individual and is the basis for the development of a funding
level based on the assigned funding range.
133

Annual Budget Limitations for
Adult Day Services
 Each individual who is eligible for and who wants to receive adult day services is assigned a
budget limitation. This is the funding amount that is available to a person to purchase adult
day waiver services. In order to obtain this budget limitation, several steps must be completed.
The AAI is used to determine the staff intensity ratio that is needed by the individual. SSAs
need to obtain and review information contained in the AAI for each individual and submit this
information to the ODDD. A score is then assigned by the ODDD based on the data contained
in the AAI. This score will assign an individual to one of four groups that correlate with the
staff intensity ratios required by the individual. These groups are called Group A, Group A-1,
Group B and Group C. A staff intensity ratio is the portion of time that one direct service staff
member spends with an individual.
Each county also has been assigned a cost of doing business category (CODB). There are
eight COBDs. Budget limitation charts are available that allow the SSA to look up the amount
of funding available to an individual based on their assigned Group and the county’s COBD
category.
134

 The SSA is responsible for keeping the individual and or their guardian, when applicable,
notified of the AAI score, the resulting group assignment, the related budget limitation and any
changes that occur.
Once an individual’s ISP is in place, the budget limitation has been determined, and service
delivery has begun, billing for services begins. If an individual receives between five and
seven hours of adult day services from one certified provider, the provider is to bill using a
daily billing unit. If the individual receives less than five hours of service or receives five-seven
hours of service from more than one provider, fifteen minute billing units are used.
Charts are also available to help staff determine the rate that can be billed for non-medical
transportation to access adult day services. This amount can then be calculated for inclusion in
the individual budget for a person.
If an individual’s team determines that an individual’s needs exceed the funding level that has
been assigned through the ODDP, the team can request an administrative review of the score.
This review process is per the Waiver Reimbursement Rule 5123:2-9-06. Prior authorization
must be obtained in accordance with rule 5101:3-41-12 of the Administrative Code to
authorize an individual funding level that exceeds the maximum value of the funding range
that is determined for an individual through the use of the ODDP.
135

5123:2-9-11
HCBS waivers - free choice of provider.
(A) Purpose
The purpose of this rule is to establish procedures for individuals to choose qualified and willing
providers of home and community-based services in accordance with provisions set forth in
sections 5126.046 and 5123.044 of the Revised Code. This rule clarifies the department's role in
assuring the free choice of provider processes are adhered to and is intended to emphasize the
right of individuals to choose any qualified provider of home and community-based services.
Nothing in this rule shall have the effect or shall be interpreted as limiting that choice.
(B) Application
(1) This rule applies to all county boards; to all persons responsible for service and support
administration in accordance with section 5126.15 of the Revised Code when assisting
individuals/guardians who may be eligible for services through a county board to select home
and community-based service providers; and to qualified providers of home and community-
based services. This rule is applicable to qualified providers of home and community-based
services when these services are provided in a facility licensed by the department in accordance
with section 5123.19 of the Revised Code. The requirements of this rule supersede the
requirements contained in paragraphs (C)(4), (C)(5), (C)(6), (C)(7) and (G)(1)(a) of rule 5123:2-
3-05 of the Administrative Code.
(2) Notwithstanding paragraph (G)(1) of this rule, the SSA shall follow the provider choice
process set forth in paragraphs (H) and (I) of this rule for each service specified in an ISP, at the
time of an individual’s enrollment in a home and community-based services program, annually at
the time of re-determination, and at any other time the individual/guardian expresses an interest
in or makes a request to choose a new, different or additional provider.
(C) Definitions
(1) “County board” means a county board of mental retardation and developmental disabilities
established under Chapter 5126. of the Revised Code or a regional council of government
comprised of two or more county boards and formed under section 5126.13 of the Revised Code.
(2) “Department” means the Ohio department of mental retardation and developmental
disabilities as established by section 121.02 of the Revised Code.
(3) “Guardian” means a guardian appointed by the probate court under Chapter
2111. of the Revised Code. If the individual is a minor for whom no guardian has been appointed
under that chapter, “guardian” means the individual’s parents. If no guardians have been
appointed for a minor and the minor is in the legal or permanent custody of a government agency
or person other than the minor’s natural or adoptive parents, “guardian” means that government
agency or person. “Guardian” also includes an agency under contract with the department for the
provision of protective service under sections 5123.55 to 5123.59 of the Revised Code.
(4) “Home and community-based services” means medicaid funded home and community-based
services provided under a medicaid component the department administers pursuant to section
5111.871 of the Revised Code, as described and modified through rules promulgated by ODJFS
and the department.
(5) “Individual” means a person with mental retardation or other developmental disability who is
eligible to receive home and community-based services as an alternative to receiving services in
an intermediate care facility for the mentally retarded under the applicable waiver. A guardian
may take any action on behalf of the individual, make choices for an individual, or may receive
notice on behalf of an individual to the extent permitted by applicable law.

(6) “ISP” means the individual service plan, a written description of the services, supports and
activities to be provided to an individual.
(7) “ODJFS” means the Ohio department of job and family services as established by section
(8) “Qualified provider” means an agency or individual certified by the department to provide
home and community-based services and who has a medicaid agreement with ODJFS that covers
the services.
(9) “Service and support administration” means the duties performed by individuals employed or
under contract with a county board to provide service and support administration as identified in
section 5126.15 of the Revised Code.
(10) “SSA” means service and support administrators who are certified in accordance with rules
adopted by the department under Chapter 5123:2-5 of the Administrative Code and who provides
the functions of service and support administration.
(11) “Willing provider” means a qualified provider who, in accordance with the provider choice
process contained in paragraphs (H) and (I) of this rule, agrees to provide home and community-
based services. When determining willingness to provide federally funded waiver services to an
individual, neither the provider nor any person acting on behalf of the provider shall
discriminate, by reason of race, color, religion, sex, age, handicap, national origin or ancestry,
against any individual eligible to receive home and community-based services.
(D) Decision-making responsibility
(1) An individual shall be responsible for making all decisions regarding free choice of providers
unless the individual has a guardian, in which case the guardian shall be responsible for making
such decisions.
(2) Individuals, including those with guardians, have the right to participate in decisions
regarding the free choice of providers.
(3) An individual who does not have a guardian or an individual's guardian may designate
another person, including a member of the individual's family, to participate in the process of
making decisions regarding free choice of providers in accordance with paragraph (P) of rule
5123:2-1-11 of the Administrative Code.
(E) Provider lists
(1) The department shall create and maintain on its website lists of all providers of home and
community-based services who meet the requirements of paragraph (C)(8) of this rule. The
department shall update the list at least monthly.
Providers shall update their information at the frequency and in the manner determined by the
department.
(2) The SSA shall utilize the lists of providers created by the department to assist the individual
in identifying potential providers, in accordance with paragraph (H) of this rule.
(F) Notification process
(1) Annually, the county board shall provide to each individual, guardian and/or person
designated by the individual the following information in writing and in a form and manner the
individual can understand:
(a) A description of the individual's right to choose any qualified provider from among all those
available statewide and not limited to those who provide services currently in a given county.
(b) Procedures the SSA will follow, in accordance with paragraph (H) of this rule, to assist an
individual/guardian in the selection of providers of home and community-based services. The
procedures shall be based upon written guidance developed and approved by the department and

ODJFS and shall be made available to each individual without modification of the guidance
provided.
(c) A description of information available on the department’s website pertaining to providers of
home and community-based services and instructions to access the information.
(d) A description of the individual’s hearing rights pursuant to section
5101.35 of the Revised Code that are contained in a handbook developed and approved by the
department and ODJFS.
(2) The county board shall maintain documentation to verify compliance with the requirements
of paragraph (F)(1) of this rule, including the list of individuals contacted, the date(s) on which
the notification occurred, and the text of the notification.
(G) Provider choice options available to an individual
(1) When an individual/guardian identifies and/or chooses a qualified provider who is also
willing to provide home and community-based services to the individual, the SSA shall honor
the individual’s/guardian’s request and shall not utilize the provider selection process set forth in
paragraphs (H) and (I) of this rule. The SSA shall document this selection.
(2) An individual/guardian may choose homemaker/personal care services providers under the
home and community-based services waivers through two options:
(a) If an individual currently resides in a facility licensed by the department in accordance with
section 5123.19 of the Revised Code in which the operator is certified to provide home and
community-based services, or desires to reside in a licensed facility in the future, the
individual/guardian is choosing both the place of residence and the homemaker/personal care
services provider. To change providers of homemaker/personal care services, with assistance
provided by the SSA, the individual/guardian shall:
(i) Obtain the agreement of the licensee to permit another provider of homemaker/personal care
services to provide services within the licensed home; or
(ii) Relocate from the licensed home.
(b) If the individual resides in any other setting in which it is permissible to receive home and
community-based services, the individual/guardian may choose any qualified and willing
provider using the processes described in this rule.
(H) Responsibilities of the county board in the choice process
Except as provided in paragraph (G)(1) of this rule, the county board shall adhere to
5123:2-9-11 4 the following processes to assist an individual/guardian to choose qualified
providers of home and community-based services:
(1) The county board shall inform the individual/guardian of the department's website containing
the list of providers qualified to provide home and community-based services.
(2) The county board shall assist the individual/guardian to access the website, if assistance is
needed.
(3) The county board shall assist the individual/guardian, if requested by the individual/guardian,
to obtain outcomes of past internal and/or external monitoring reviews of home and community-
based services provided.
(4) Following the individual's/guardian's review of the list of qualified providers and
identification of the individual's/ guardian's preliminary consideration of a qualified provider, the
county board shall contact the provider(s) selected preliminarily by the individual to determine
the provider’s interest in providing services to the individual. This contact shall be made within
five working days following the county board’s receipt of the preliminary provider selections by

the individual/guardian, unless the individual/ guardian or a person designated by the
individual/guardian wishes to contact the provider(s) directly.
(I) Responsibilities of the SSA, provider, and individual in the choice process
(1) If at any time during the process protected health information is requested, the
SSA shall obtain a HIPAA-compliant release of information from the
individual/guardian before such information shall be provided.
(2) At the time of the initial contact with the provider(s) who is the preliminary
choice of the individual, the SSA shall describe the services and supports
desired by the individual and the anticipated frequency, duration, and location
of the services to be delivered.
(3) The provider shall inform the SSA of the provider’s preliminary determination
to proceed with the selection process within two working days following this
initial contact by the SSA.
(4) In each instance when the provider has indicated a preliminary interest in
providing waiver services to the individual, the SSA shall assure that the
individual/guardian is aware of his/her opportunity to meet with the provider.
If the individual/guardian indicates the desire for this meeting, if requested,
the SSA shall assist the individual/guardian to meet with the provider at a
place and time acceptable to both parties.
(5) When an agency provider has agreed to be available for consideration by an
individual/guardian, if requested by the individual/guardian, the agency shall
make available:
(a) Description of all home and community-based services the provider is
certified to provide;
(b) Qualifications of the chief executive officer of the agency;
(c) Written policies and procedures related to the provision of the home and
community-based services desired by the individual; and
(d) Additional information the provider elects to make available, including
outcomes of past internal and/or external monitoring reviews of the
home and community-based services provided.
(6) When an individual provider has agreed to be available for consideration by an
individual/guardian, if requested by the individual/guardian, the provider
shall make available:
(a) A description of all home and community-based services the provider is
certified to provide; and
(b) Additional information the provider considers to be relevant, including
past experiences providing services and supports.
(7) Unless the individual/guardian does not desire to have a meeting, within three
working days following the meeting with the individual/guardian, the
provider shall inform the county board whether the provider is interested in
pursuing the referral.
(8) If the provider is not interested in pursuing the referral, the county board shall
notify the individual/guardian within two working days and resume the
provider choice process with an alternative provider.
(9) Nothing in this rule shall be construed to prohibit an individual/guardian from engaging
simultaneously in the provider selection process with more than one provider.

(10) If the provider is interested in pursuing the referral, the county board shall forward
information to the provider sufficient to enable the provider to determine whether he/she can
provide the desired waiver services and meet the health and welfare needs of the individual
within the standards governing payment for the home and community-based services. This
information shall be released within three working days following the county board’s receipt of
an indication of interest by the provider and only upon consent from the individual/guardian.
(a) When the potential provider indicates that supplemental information and/or assessments are
needed to enable the provider to evaluate the service delivery strategy that will best support the
individual and reach a conclusion concerning the provider’s willingness to serve the individual,
based upon the reasonableness of the request, the individual/guardian shall determine the type
and extent of supplemental information to be provided.
(b) The county board shall obtain the individual’s consent to obtain the supplemental
information. When consent is obtained, the county board shall initiate activities needed to obtain
the information. In no instance shall the county board forward the supplemental material to the
provider more than twenty working days following the date on which the individual’s/guardian’s
consent was obtained.
(11) The potential provider shall inform the individual/guardian and the county board of the
provider’s determination to serve or not to serve the individual within five working days
following receipt of the information described in paragraph (I)(10) of this rule or receipt of the
supplemental information authorized for release, as described in paragraphs (I)(10)(a) and
(I)(10)(b) of this rule, whichever is the later date. This communication shall be made in a form
and manner the individual can understand. The notification also shall be made in writing to the
county board.
(12) Any timelines contained in paragraphs (H) and/or (I) of this rule may be extended with the
written consent of the individual/guardian, county board and the involved waiver service
provider.
(13) The county board shall utilize all elements of the checklist described in appendix A to this
rule to document compliance with the activities and timelines contained in paragraphs (G) to (I)
of this rule. The checklist shall be completed in each instance when an individual engages in the
free choice of a provider process, as described in paragraph (B)(2) of this rule. The county board
shall retain completed checklists as a part of the individual’s service record.
(J) Initiating services
(1) The SSA shall assist the individual in making arrangements for initiation of home and
community-based services with the chosen provider.
(2) The SSA shall document the chosen provider and the type, frequency, duration, and location
of home and community-based services on the individual's ISP. The ISP shall indicate ratios at
which services are to be delivered when individuals share waiver services.
(K) Due process and appeal rights for individuals
(1) Any recipient or applicant for home and community-based services may utilize the process
set forth in section 5101.35 of the Revised Code, in accordance with division-level designation
5101:6 of the Administrative Code, for any purpose authorized by that statute and the rules
implementing the statute, including being denied the choice of a provider who is qualified and
willing to provide a home and community-based service. The process set forth in section 5101.35
of the Revised Code is available only to applicants, recipients, and their lawfully authorized
representatives.
(2) Providers shall not utilize or attempt to utilize the process set forth in section

5101.35 of the Revised Code. Providers shall not appeal or pursue any other legal challenge to a
decision resulting from the process set forth in section 5101.35 of the Revised Code.
(3) The county board shall inform the individual or guardian, in writing and in a manner the
individual can understand, of the individual's right to request a hearing in accordance with
division-level designation 5101:6 of the Administrative Code.
(4) The county board shall immediately implement any final state hearing decision or
administrative appeal decision relative to free choice of provider for HCBS waiver services
issued by ODJFS, unless a court of competent jurisdiction modifies such a decision as the result
of an appeal by the medicaid applicant or recipient.
(L) Department training and oversight
(1) The department shall provide periodic training and assistance to familiarize individuals with
the rights and responsibilities contained in this rule and to enable county boards and providers of
home and community-based services to meet their respective obligations when implementing the
rule.
(2) The department shall assure the county board's compliance with this rule and initiate
appropriate remedial action, when warranted, in accordance with sections 5123.044 and
(3) The department shall investigate or cause an investigation of complaints when it is alleged by
the individual/guardian that the individual is being denied free choice of a provider of home and
community-based services. On receipt of these complaints, the department shall do either of the
following:
(a) Conduct an independent review or investigation of the complaint in accordance with section
5123.14 of the Revised Code;
(b) Request that an independent review or investigation of the complaint be conducted by a
county board that is not implicated in the report, a regional council of government, or any other
entity authorized to conduct such investigations.
(4) The department shall conduct an individual quality assurance review, at the frequency
determined by the department, in accordance with rule 5123:2-12-01 of the Administrative Code
to verify through an interview process with the individual, guardian and involved family
members the extent of their participation in the choice of a provider.
(5) The department shall utilize the accreditation process in accordance with rule
5123:2-4-01 of the Administrative Code to monitor county board compliance with requirements
of this rule.
(M) Assistance to parties interested in becoming providers
(1) The county board shall refer all parties interested in becoming a provider of home and
community-based services to the department's website.
(2) The department shall include on the website a description of the entire certification process
including an application for certification as a home and community-based service provider.
(3) The department shall assist all parties interested in becoming providers.
(4) The county board shall not require current or potential providers of home and community-
based services to meet standards and/or training expectations that exceed or are separate from the
provider certification requirements adopted by the department and contained in the Ohio
Administrative Code.

Bloodborne Pathogens
 What is a bloodborne pathogen?
 A bloodborne pathogen is any organism that is present in human blood that can
cause disease. Some of the most common bloodborne pathogens are HIV
(Human Immunodeficiency Virus) that causes AIDS, Hepatitis B Virus (HBV) that
causes liver disease and Hepatitis C Virus (HBC) that also causes liver disease.
 Why do you need to know about bloodborne pathogens?
 You need to know how to prevent yourself and others from acquiring
bloodborne illness, what diseases are spread through contact with contaminated
blood or other potentially infectious materials, and what type of contact does
and does not pose a threat of illness from a bloodborne pathogen.
138

 What diseases are spread through bloodborne pathogens?
 HBV (Hepatitis B Virus)
 HCV (Hepatitis C Virus)
 HIV (Human Immunodeficiency Virus)
 Syphilis
 Malaria
 Many Others
 For health care workers in the United States, the top three are
those of greatest concern.
139

Most common bloodborne diseases
 Hepatitis B
 Hepatitis B is a liver disease caused by a virus that can be a mild to severe illness. It can
be short-term or a serious long-term illness that can lead to liver disease and liver cancer.
The Hepatitis B vaccine can prevent you from contracting Hepatitis B.
 Hepatitis B can be acquired by contact with infected blood, semen and other body fluids,
having sex with an infected person, using contaminated needles, or it can be passed from
an infected mother to her newborn.
 The Hepatitis B virus can survive outside of the body for at least 7 days and still be
capable of causing infection.
 Hepatitis C
 Hepatitis C is a liver disease caused by the Hepatitis C virus. This can result in an acute or
chronic illness. Hepatitis C can lead to cirrhosis of the liver and liver cancer.
 Hepatitis can be acquired by contact with the blood of an infected person. This occurs most
often through use of contaminated needles.
 There is no vaccine or cure for hepatitis C.
140

 HIV
 HIV (Human Immunodeficiency Virus) causes AIDS. HIV attacks the immune system and destroys a type
of white blood cell that the immune system needs to fight disease.
 HIV is most often acquired through sexual contact, by injection into a vein (injected drug use), through
mucous membranes, through contact of the virus into cuts and sores and from infected mothers passing it
to their child before or during birth or through breast-feeding.
 Healthcare workers have become infected with HIV by being stuck with needles contaminated with HIV-
infected blood or by coming into contact with infected blood such as being splashed with blood or a
contaminated body fluid into an open cut or being splashed in the eyes or nose. HIV is rarely
contracted by health care workers through work activities.
 The HIV virus dies very quickly outside of the body. There is no vaccine for HIV.
 Following standard precautions (formerly called universal precautions) is the best way to prevent
contact with infected blood or other potentially infectious materials.
141

Symptoms of Disease
 Hepatitis B C
Only blood tests can determine if you are infected. Symptoms may or may not be present.
Symptoms may include:
 fever
 jaundice (yellow skin/eyes)
 fatigue
 loss of appetite
 nausea
 vomiting
 dark urine
 clay-colored stools
 joint pain
 abdominal discomfort or pain
 HIV
The only way to know if you are infected with HIV is to be tested. There may be no symptoms
for 10 years or more after exposure.
142

the ABC's of Hepatitis
Hepatitis Facts: Worldwide Snapshot
Hepatitis A Virus (HAV) Infection:
• In 2005, there were an estimated 42,000 Hepatitis A infections.
• Hepatitis A is the cause of 30 days of missed work and approximately $2,600 in lost
wages each year.
• Medical care alone for hepatitis A can cost $2,800 for each hospitalized case.
• Approximately 100 Americans die each year from Hepatitis A.
• The annual cost associated with Hepatitis A is estimated at $200 million in the U.S.
Hepatitis B Virus (HBV) Infection:
• HBV is 100 times more infectious than HIV, the virus that can cause AIDS.
• Hepatitis B vaccine can provide immunity in over 95% of young healthy adults.
• An estimated 350 million people are infected globally with HBV.
• Approximately 1 million die each year from complications from HBV.
• 70% of new cases occur among people between the ages of 15-39.
• Every year 5,000 Americans die from cirrhosis and 1,000 from liver cancer due to
HBV infections.
• 22,000 pregnant women in the U.S. are infected with HBV and can transmit it to
their newborns.
• HBV can live on a dry surface for at least 7 days.
Hepatitis C Virus (HCV) Infection:
• 3% of the world's population is infected with HCV, or approximately 170 million
people. 90% of HCV patients who are in need of treatment today cannot afford it.
• 80% of affected people can become chronically infected and risk serious long-term
clinical disease including cirrhosis and liver cancer.
• 8 countries – Bolivia, Burundi, Cameroon, Egypt, Guinea, Mongolia, Rwanda, and
Tanzania – have an HCV prevalence above 10%.
• 7 countries/areas – Gabon, Libya, Papua New Guinea, Suriname, Vietnam, Zaire, and
the United Nations Relief and Works Agency for Palestine Refugees in the Near East –
have an HCV prevalence between 5 and 10%.
• In developing countries, the primary sources of HCV infection include transfusion of
blood or blood products from unscreened donors; transfusion of blood products that
have not undergone viral inactivation; parenteral exposure to blood through the use
of contaminated or adequately sterilized instruments and needles used in medical
and dental procedures; the use of unsterilized objects for rituals (e.g. circumcision,
scarification), traditional medicine (e.g. blood-letting) or other activities that break
the skin (e.g. tattooing, ear or body-piercing); and intravenous drug use. Household
or sexual contacts of HCV-infected persons are marginally at risk.
• In developed countries, persons at risk of HCV infection include recipients of
previously unscreened blood, blood products, and organs; intravenous drug users;
individuals undergoing chronic hemodialysis; health care workers with percutaneous
exposure from contaminated needles or sharps; persons who participate in high-risk
sexual practices; and persons undergoing medical or dental procedures with

inadequately sterilized instruments. Sexual and household transmission are
uncommon.
Basics: Hepatitis A (HAV)
What is Hepatitis A?
Hepatitis A is one of many hepatitis viruses causing inflammation of the liver.
Who Is At Risk?
Hepatitis A can affect anyone. In the U. S., hepatitis A can occur in situations ranging from
isolated cases of disease to widespread epidemics. Hepatitis A is one of the most frequently
reported vaccine-preventable diseases in the U. S. Some of the higher-risk groups are:
travelers to countries with high rates of hepatitis A, men who have sex with men, injecting-
drug users, people with clotting-factor disorders, people with chronic liver disease, and
children living in communities with high rates of disease.
Symptoms
Children with hepatitis A usually have no symptoms. Adults may become quite ill suddenly,
experiencing jaundice, fatigue, nausea, vomiting, abdominal pain, dark urine/light stools,
and fever. The incubation period averages 30 days. However, an infected individual can
transmit the virus to others as early as two weeks before symptoms appear. Symptoms will
disappear over a 6 -12-month period until complete recovery occurs.
Diagnosis
Your doctor can't single out Hepatitis A from other types of viral hepatitis based upon your
physical symptoms alone. The only way to diagnose HAV is to do a blood test seeking to
find IgM antibodies. In most people, these antibodies become detectable 5-10 days before
the onset of symptoms and can persist for up to 6 months after infection.
How Does it Spread?
Hepatitis A is most often spread from person to person through situations such as these:
• Food preparers who are infected can pass the virus on if they do not wash their
hands with soap and water after having a bowel movement, especially when they
prepare uncooked foods.
• Fecal contamination of food and water.
• Anal/oral contact, by putting something in the mouth that had been contaminated
with infected feces.
• Diaper changing tables, if not cleaned properly or changed after each use, may
facilitate the spread of HAV.
• Fecal residue may remain on the hands of people changing soiled diapers.
• Eating raw or partially cooked shellfish contaminated with HAV.
Treatment
No specific treatment is necessary for hepatitis A. Disease
Outcome
Hepatitis A will clear up on its own in a few weeks or months with no serious after effects.
Once recovered, an individual is then immune for life to HAV through the presence of the
IgG antibody . About 1 in 100 HAV sufferers may experience a sudden and severe (i.e.,
fulminant) infection.

Preventing HAV
Infection HAV infection is preventable! Here's how you do it:
• Get an immune globulin (IG) shot. An IG shot can provide temporary immunity to
the virus for 2 to 3 months when given prior to exposure to HAV or within 2 weeks
after exposure.
• Ask for the HAV vaccine. The HAV vaccine, made from inactive hepatitis A virus
(synthetic), is highly effective in preventing the hepatitis A infection. However, its
safety when given during pregnancy has not been determined. Check with your
doctor to determine how many shots you need. The vaccine provides protection for
about four weeks after the first injection; a second injection protects you longer,
possibly up to 20 years.
Who should have the HAV vaccine?
• Users of illegal drugs.
• Individuals who have chronic liver disease or blood clotting disorders (e.g.,
hemophilia).
• Those who have close physical contact with people who live in areas with poor
sanitary conditions.
• Those who travel or work in developing countries. This includes all countries except
northern and western Europe, Japan, Australia, New Zealand, and North America
except Mexico.
• Men who have sex with other men.
• Children in populations that have repeated epidemics of hepatitis A (e.g., Alaska
natives, American Indians, and certain closed religious communities).
• People who have chronic lever disease.
Basics: Hepatitis B (HBV)
What is Hepatitis B?
Hepatitis B is an inflammatory liver disease caused by the hepatitis B virus (HBV) that
results in liver cell damage. This damage can lead to scarring of the liver (cirrhosis) and
increased risk of liver cancer in some people. About 80,000 Americans were newly infected
with HBV in 1999.
Who Is At Risk?
One out of every 20 people in the U. S. will become infected with HBV sometime during
their lives. Your risk is higher if you:
• Have sex with someone infected with HBV.
• Have sex with more than one partner.
• Are a man and have sex with a man.
• Live in the same house with someone who has chronic HBV infection.
• Have a job that involves contact with human blood.
• Inject illegal substances/drugs. Have hemophilia.
• Travel to areas where HBV is common (this includes all countries except northern
and western Europe, Japan, Australia, New Zealand, and North America except
Mexico).

Symptoms
Many people with newly acquired hepatitis B have no symptoms at all, or they may be very
mild and flu-like – loss of appetite, nausea, fatigue, muscle or joint aches, mild fever, and
possibly jaundice (yellowish tinge to the skin). The only way to know if you are currently
infected with HBV – or if you still carry the virus – is to ask your doctor to do a specific
blood test for hepatitis B (it may not be included in a routine blood test). The test may not
show positive during the incubation period (45-180 days).
Diagnosis
There are three standard blood tests for HBV:
• HBsAG (hepatitis B surface antigen):
When this test is positive or reactive, you are infected with HBV and can pass it on to
others.
• Anti-HBc (antibody to hepatitis B core antigen):
When you test positive, it means you are currently infected with HBV or have been
infected at some point in the past.
• Anti-HBs (antibody to HbsAg):
When this test is positive, it means that you are immune to hepatitis B either as a
result of having had the disease or from having been given the vaccine.
How Does It Spread?
HBV is found in blood, seminal fluid, and vaginal secretions. The risk of transmission is
increased in these situations:
• Sexual contact with an infected person.
• Living in the same household with an infected individual.
• Contact with infected blood or seminal fluid and contaminated needles, including
tattoo/body piercing instruments.
• HBV-infected mother to her newborn at time of delivery (prenatal blood tests for HBV
should always be done if there is a suspicion of HBV).
Treating HBV
There are two medications to treat chronic HBV – Interferon (IFN) and Lamivudine. Less
than 50% of patients with chronic HBV are candidates for interferon therapy. Initially, 40%
of HBV patients who are treated with IFN will respond. However, some will relapse when the
treatment is stopped. Overall, about 35% of the eligible patients will benefit. IFN treatments
may have a number of side effects, including flu-like symptoms, headache, nausea,
vomiting, loss of appetite, depression, diarrhea, fatigue, and thinning hair. Interferon may
lower the production of white blood cells and platelets by depressing the bone marrow.
Thus, blood tests are needed to monitor blood cells, platelets, and liver enzymes. The
response to oral Lamivudine, given for at least one year, may be somewhat lower. In
addition, those who are chronically infected with HBV should be vaccinated against hepatitis
A. There is no treatment for acute Hepatitis B.
Disease Outcome
- Either you develop immunity to HBV . . . 95% of adults infected develop antibodies and
recover spontaneously within six months. Upon recovery, they develop immunity to the
virus and they are not infectious to others. Blood tests will always test positive for the HBV
antibody. Blood banks will not accept donations of blood from HBV-immune people.
- OR you become chronically infected. About 5% of the time, the virus does not clear the
body within six months. If so, a person is considered a carrier – or chronically infected.

Chronically infected people may or may not show outward signs or symptoms. The HBV
virus remains in blood and body fluids, and can infect others.
Preventing HBV Infection - Things you can do:
• Practice safe sex (use latex condoms).
• Don't share anything that could have an infected person's blood on it, i.e.
toothbrushes, razors, nail clippers, body piercing instruments.
• Don't share drug needles, cocaine straws or any drug paraphernalia.
• Cover all sores and rashes and do not touch them.
• Clean up any blood spills with a 10% solution of household bleach. Infected persons
should not pre-chew food for babies.
• If exposed to hepatitis B, get an HBIG (hepatitis B immune globulin) injection within
14 days following exposure.
Get an HBV vaccination.
Here's who should be vaccinated without fail:
• All individuals living in the same household with a chronically infected individual.
• All newborns and children up to the age of 19.
• Those who are in positions where they are exposed to blood at work, through drug
use, or who have multiple sex partners.
• Individuals with hepatitis C and other chronic liver diseases.
Vaccination provides protection for more than 15 years, and possibly a lifetime. HBV booster
shots are not recommended.
Newborn Vaccination
All newborns should get three vaccination doses of the HBV vaccine the first within 12
hours of birth, the second at 1-2 months, and the third at 6 months. In addition, babies
born to infected mothers should receive a shot called H-BIG within 12 hours of delivery.
Without the above intervention, 90% of babies born to infected mothers will become
chronically infected, reducing their life expectancies. A few months after the last dose is
given, the doctor will test to see if the baby is making HBV antibodies. If so, the baby will
be safe from hepatitis B for life. HBV-infected mothers may nurse their babies.
Basics: Hepatitis C (HCV)
What Is Hepatitis C ?
Hepatitis C virus (HCV) causes inflammation of the liver. A national U. S. survey found that
1.8 percent of Americans – about 3.9 million – have been infected with HCV, of whom most
about 2.7 million – are chronically infected with HCV, with many showing no signs or
symptoms. The good news is that, in 1995, a reliable antibody test for HCV was finally
implemented nationwide. About 41,000 new cases occurred in 1998 with 15-25%
recovering spontaneously. Hepatitis C is a slow-progressing disease that may take 10-40
years to cause serious liver damage in some people.
Who Is At Risk?
Since about four million Americans are infected with HCV and most don't know it, you
should have a blood test for hepatitis C whether you feel sick or not. About one in ten

people infected with HCV have had no identifiable exposure to HCV. That said, here are
several obvious risk factors:
• Intravenous (IV) drug users – even IV use in the distant past.
• Those with multiple sex partners or sex with partners who have other sexually
transmitted diseases.
• Those with tattoos or body piercing done with unsterile instruments. Anyone who has
had a blood transfusion prior to 1992 or clotting factors produced before 1987.
• Hemodialysis (diabetes) patients.
• The potential for transmission from an HCV-infected mother to her newborn appears
to be about 5%.
How Does it Spread?
• Injection drug use is the primary risk for HCV infection. Injection drug use accounts
for about 60% of all new cases of hepatitis C and is a major risk factor for infection
with hepatitis B virus. Among frequent drug users, 50-80% are infected by HCV
within the first 12 months of beginning injecting.
• Straws shared in snorting drugs are also a potential source of infection of HCV. The
hepatitis C virus is found mainly in blood.
• HCV is not spread through kissing or casual contact.
• In relationships where there is one steady partner, sexual transmission is
exceedingly unusual, less than 3% over decades in sexually active couples.
Transmission from HCV RNA negative individuals has never been reported. Sexual
transmission may be more common among those with multiple sex partners or
where there is a history of sexually transmitted disease but this remains
controversial and unconfirmed.
• HCV may be transmitted by using razors, needles, toothbrushes, nail files, a barber's
scissors, tattooing equipment, body piercing or acupuncture needles if these items
are contaminated by blood of an infected person.
• Healthcare workers have a 2% risk of acquiring HCV after a needle stick
contaminated with HCV-positive blood.
• There is no evidence indicating that HCV is transmitted through breast milk.
• The current transmission rate through blood transfusions is estimated at less than 1
per 1,000,000 units transfused.
Symptoms
Most people who are infected with the HCV do not have symptoms and are leading normal
lives. If symptoms are present, they may be very mild and flu-like – nausea, fatigue, loss of
appetite, fever, headaches, and abdominal pain. Most people do not have jaundice although
jaundice can sometimes occur along with dark urine.
The incubation period varies from 2-26 weeks. Liver enzyme tests may range from being
elevated to being normal for weeks to as long as a year. The virus is in the blood and may
be causing liver cell damage, and the infected person can transmit the disease to others.
Diagnosis
Test for HCV antibodies: HCV infection can be determined by a simple and specific blood
test that detects antibodies against HCV. The current enzyme immunoassay test (EIA) that
detects anti-HCV has a sensitivity of about 95% in chronic HCV. HCV infection may be
identified by anti-HCV testing in approximately 80% of people as early as five weeks after
exposure. This test is not a part of a routine physical examination, and people must ask

their doctor for a hepatitis C antibody test. (Note: The antibody itself does not provide
immunity, and the test does not distinguish between acute or chronic infection.) If the initial
test is positive, it test should be repeated to confirm the diagnosis (and exclude possible
laboratory error). If the initial test is negative, but the infection could have occurred within
the last six months and HCV is suspected, antibody levels may not be high enough yet to be
detectable (antibodies may not be present in the first 4 weeks of infection in about 30% of
patients) or you may lack immune response. Under these circumstances, ask you doctor
about repeating the test and about alternative test methods.
Test liver enzyme levels: If you may already have chronic infection, your doctor will test the
levels of two liver enzymes. These are alanine aminotransferease (ALT) and aspartate
aminotransferease (AST). Both are released when liver cells are injured or die. Elevated ALT
and AST levels may appear and disappear throughout the course of the HCV infection. If the
liver enzyme levels are normal with chronic HCV, they should be re-checked several times
over a 6 - 12 month period. If the liver enzyme levels remain normal, your doctor may
check them less frequently, such as once a year.
Treating HCV
• There are three types of interferon, plus a combination of interferon and Ribavirin,
used to treat hepatitis C. Blood tests and liver biopsy findings may determine the
need for treatment.
• Interferon must be given by injection, and may have a number of side effects,
including flu-like symptoms – headaches, fever, fatigue, loss of appetite, nausea,
vomiting, and thinning of hair.
• Ribavirin, given by mouth, can have additional side effects including depression,
severe anemia and especially birth defects. Women or the male partners of women,
who are pregnant or who are planning pregnancy, should not take Ribavirin.
Pregnancy should not be attempted until six months after treatment is ended.
Ribavirin may also interfere with the production of red blood cells and platelets by
depressing bone marrow. Patients should be monitored frequently.
• While 50-60% of patients respond to treatment initially, sustained response occurs in
up to 40%.
• Treatment of children with HCV is under investigation.
• Researchers are re-examining when treatment should begin, for how long it should
continue, and its effectiveness.
• Many pharmaceutical companies and NIH are conducting research to find more
effective treatments and cures.
• Currently, almost 1/2 of all liver transplants in the US are performed for end-stage
hepatitis C. However, re-infection of the transplanted liver by the virus usually
occurs and may require a second transplant.
• Try to maintain as normal a life as possible, eating a well-balanced diet, exercising
and keeping a positive attitude. Avoid depressing or overwhelming tasks and learn
how to pace yourself. Rest when you feel tired. Plan physically exhausting tasks in
the morning when your energy level is at its peak.
Disease Outcomes
Between 20- 30 percent of HCV sufferers are able to have a sustained viral response with
proper treatment. Between 70 80% of the HVC infections reported each year become
classified as chronic. Chronic HCV refers to infections that do not clear up within 6 months
after the acute infection. Within the chronically infected group, about 20% go on to develop
cirrhosis (scarring of the liver). Of this group, 25% may develop liver failure, even though
this may take 30-40 years. Cirrhosis slows the blood flow through the liver and causes

increased pressure in the vein that carries blood from the stomach and the intestines to the
liver. As a result, varicose veins (e.g., varices) may develop in the stomach and
esophagus. Without warning these large veins can break causing a person to vomit blood or
have black, tarry stools. An estimated 8,000-10,000 deaths occur each year resulting from
the complications of HCV.
Preventing HCV Infection
• There is NO vaccine to prevent HCV. Vaccines for Hepatitis A and B do not provide
immunity against hepatitis C. There are various genotypes of HCV and the virus
undergoes mutations making it difficult to develop a vaccine.
• Avoid handling anything that may have the blood of an infected person on it, such as
razors, scissors, toothbrushes, nail clippers or files, tampons or sanitary napkins, etc.
Detergent and a 10% solution of household bleach is believed to kill the virus.
• Don' t share drug needles, cocaine straws or any drug paraphernalia.
• Practice safe sex (use latex condoms).
• Notify your physician and dentist that you have hepatitis .
• Get vaccinated against hepatitis A and B.
• Those infected with hepatitis C should not drink alcohol, as it accelerates the liver
damage.

Hepatitis B
General Information
Who is at risk?
Although anyone can get hepatitis B,
some people are at greater risk, such
as those who:
■ Have sexual contact with an
infected person
■ Have multiple sex partners
■ Have a sexually transmitted disease
■ Are men who have sexual contact
with other men
■ Inject drugs or share needles,
syringes, or other drug equipment
■ Live with a person who has chronic
hepatitis B
■ Are infants born to infected mothers
■ Are exposed to blood on the job
■ Are hemodialysis patients
What is hepatitis?
“Hepatitis” means inflammation of the liver. Hepatitis is most often
caused by one of several viruses, such as hepatitis A virus, hepatitis B
virus, or hepatitis C virus. Toxins, bacterial infections, certain drugs,
other diseases, and heavy alcohol use can also cause hepatitis.
What is hepatitis B?
Hepatitis B is a contagious liver disease that results from infection with
the hepatitis B virus. It can range in severity from a mild illness lasting
a few weeks to a serious, lifelong illness. Hepatitis B can be either
“acute” or “chronic”.
Acute hepatitis B virus infection is a short-term illness that occurs within
the first 6 months after someone is exposed to the hepatitis B virus.
Acute infection can—but does not always—lead to chronic infection.
Chronic hepatitis B virus infection is a long-term illness that occurs
when the hepatitis B virus remains in a person’s body.
The best way to prevent hepatitis B is
by getting vaccinated.
How common is hepatitis B in the United States?
The number of acute hepatitis B virus infections has been declining
each year, with an estimated 46,000 new infections in 2006. Many
experts believe this decline is a result of widespread vaccination
of children. However, up to 1.4 million people may have chronic
hepatitis B, many of whom are unaware of their infection.
How is hepatitis B spread?
Hepatitis B is usually spread when blood, semen, or
another body fluid from a person infected with the
hepatitis B virus enters the body of someone who is
not infected. This can happen through sexual contact
with an infected person or sharing needles, syringes, or
other drug-injection equipment. Hepatitis B can also
be passed from an infected mother to her baby at birth.
Hepatitis B is not spread through breastfeeding,
sharing eating utensils, hugging, kissing, holding
hands, coughing, or sneezing. Unlike some forms of
hepatitis, hepatitis B is not spread by contaminated
food or water.
Can hepatitis B be spread through sex?
Yes. In the United States, hepatitis B is most commonly spread through
sexual contact. The hepatitis B virus is 50–100 times more infectious
than HIV and can be passed through the exchange of body fluids, such
as semen, vaginal fluids, and blood.

-
Who should get vaccinated
against hepatitis B?
■ Anyone having sex with an
infected partner
■ People with multiple sex partners
■ Anyone with a sexually transmitted
disease
■ Men who have sexual contact with
other men
■ Users of injection drugs
■ People who live with someone who
is infected
■ People with chronic liver disease,
end stage renal disease, or
HIV infection
■ Healthcare and public safety
workers exposed to blood
■ Residents or staff of facilities for
developmentally disabled persons
■ Travelers to certain countries
■ Infants or children younger than 19
who have not been vaccinated
■ Anyone who wants to be protected
from hepatitis B
What are the symptoms of acute hepatitis B?
Not everyone has symptoms with acute hepatitis B, especially young
children. Most adults have symptoms that appear within 3 months of
exposure. Symptoms can last from a few weeks to several months
and include:
■ Fever
■ Fatigue
■ Loss of appetite
■ Nausea
■ Vomiting
■ Abdominal pain
■ Dark urine
■ Clay-colored
bowel movements
■ Joint pain
■ Jaundice
What are the symptoms of chronic hepatitis B?
Many people with chronic hepatitis B remain symptom free for up to
30 years, but others experience ongoing symptoms similar to those
of acute hepatitis B. Chronic hepatitis B is a serious disease that can
result in long-term health problems.
How is hepatitis B diagnosed and treated?
Doctors diagnose the infection using one or more blood tests. There
is no medication available to treat acute hepatitis B, so doctors usually
recommend rest, adequate nutrition, and fluids. People with chronic
hepatitis B virus infection should be monitored regularly for signs of liver
disease, and some people benefit from treatment with specific medications.
How serious is chronic hepatitis B?
Over time, approximately 15%–25% of people with chronic hepatitis B
develop serious liver problems, including liver damage, cirrhosis, liver
failure and liver cancer. Every year, up to 4,000 people in the United
States and more than 600,000 people worldwide die from hepatitis B-
related liver disease.
Can hepatitis B be prevented?
Yes. The best way to prevent hepatitis B is by getting vaccinated. For
adults, the hepatitis B vaccine series is usually given as 3 shots during
a 6-month period. The entire series is needed for long-term protection.
However, once a person has been infected with the hepatitis B virus, the
vaccine does not provide protection against the disease.
For more information
Talk to your health professional,
call your health department, or visit
www.cdc.gov/hepatitis
Department of HealtH Human ServiceS
Centers for Disease Control and Prevention
Division of Viral Hepatitis
www.cdc.gov/hepatitis

What I need to know
about Hepatitis Cabout Hepatitis C
NATIONAL INSTITUTES OF HEALTH
National Digestive Diseases Information Clearinghouse
U.S. Department
of Health and
Human Services

What I need to know
about Hepatitis C
NATIONAL INSTITUTES OF HEALTH
National Digestive Diseases Information Clearinghouse

16
Contents
What is hepatitis C? ................................................ 1
What causes hepatitis C?........................................ 1
How could I get hepatitis C?.................................. 2
Could I get hepatitis C from
a blood transfusion?................................................ 3
What are the symptoms? ........................................ 4
What are the tests for hepatitis C? ........................ 5
How is hepatitis C treated? .................................... 6
How can I protect myself?...................................... 7
For More Information ............................................ 8
More in the Series ................................................... 9
Acknowledgments ................................................. 10

1
Liver
What is hepatitis C?
Hepatitis C is a liver disease.
Hepatitis (HEP-ah-TY-tis)
makes your liver swell and
stops it from working right.
You need a healthy liver.
The liver does many
things to keep you
alive. The liver fights
infections and stops
bleeding. It removes
drugs and other poisons
from your blood. The
liver also stores energy
for when you need it.
What causes hepatitis C?
Hepatitis C is caused by a virus.
A virus is a germ that causes sickness. (For example,
the flu is caused by a virus.) People can pass viruses
to each other. The virus that causes hepatitis C is
called the hepatitis C virus.

2
How could I get hepatitis C?
Hepatitis C is spread by contact with an
infected person’s blood.
You could get hepatitis C by
● sharing drug needles
● getting pricked with
a needle that has
infected blood on it
(hospital workers can
get hepatitis C this
way)
● having sex with an
infected person, especially if you or your
partner has other sexually transmitted diseases
● being born to a mother with hepatitis C
In rare cases, you could get hepatitis C by
● getting a tattoo or body piercing with
unsterilized, dirty tools
You can NOT get hepatitis C by
● shaking hands with an infected person
● hugging an infected person
● kissing an infected person
● sitting next to an infected person
You could get hepatitis C
by sharing drug needles.

3
A doctor can test you for hepatitis C.
Could I get hepatitis C
from a blood transfusion?
If you had a blood transfusion or organ
transplant before 1992, you might have
hepatitis C.
Before 1992, doctors could not check blood for
hepatitis C, and some people received infected
blood. If you had a blood transfusion or organ
transplant before 1992, ask a doctor to test you
for hepatitis C. (See “What are the tests for
hepatitis C?” on page 5.)

4
What are the symptoms?
Many people with hepatitis C don’t have
symptoms.
However, some people with hepatitis C feel like
they have the flu.
So, you might
● feel tired
● feel sick to your
stomach
● have a fever
● not want to eat
● have stomach
pain
● have diarrhea
Some people have
● dark yellow urine
● light-colored stools
● yellowish eyes and skin
If you have symptoms or think you might have
hepatitis C, go to a doctor.

5
What are the tests for hepatitis C?
To check for hepatitis C, the doctor
will test your blood.
These tests show if you have hepatitis C and how
serious it is.
The doctor may also do a liver biopsy.
A biopsy (BYE-op-see) is a simple test. The doctor
removes a tiny piece of your liver through a needle.
The doctor checks the piece of liver for signs of
hepatitis C and liver damage.
The doctor will take some blood to check for hepatitis C.

6
Hepatitis C is treated through
shots of medicine.
How is hepatitis C treated?
Hepatitis C is treated with a drug called
peginterferon, usually in combination with the
drug ribavirin.
You may need surgery if you have hepatitis C for
many years. Over time, hepatitis C can cause your
liver to stop working. If that happens, you will need
a new liver. The surgery is called a liver transplant.
It involves taking out the old, damaged liver and
putting in a new, healthy one from a donor.

7
How can I protect myself?
You can protect yourself and others from
hepatitis C.
● Don’t share drug needles with anyone.
● Wear gloves if you have to touch anyone’s blood.
● If you have several sex partners, use a condom
during sex.
● Don’t use an infected person’s toothbrush,
razor, or anything else that could have blood
on it.
● If you get a tattoo or body piercing, make sure
it is done with clean tools.
● If you have hepatitis C, don’t give your blood
or plasma. The person who receives it could
become infected with the virus.
If you inject
drugs, use your
own needles.

8
For More Information
You can also get information about hepatitis C
from these groups:
American Liver Foundation (ALF)
75 Maiden Lane, Suite 603
New York, NY 10038–4810
Phone: 1–800–GO–LIVER (465–4837),
1–888–4HEP–USA (443–7872),
or (212) 668–1000
Fax: (212) 483–8179
Email: info@liverfoundation.org
Internet: www.liverfoundation.org
Hepatitis Foundation International (HFI)
504 Blick Drive
Silver Spring, MD 20904-2901
Phone: 1–800–891–0707 or (301) 622–4200
Fax: (301) 622–4702
Email: hfi@comcast.net
Internet: www.hepfi.org

9
More in the Series
There are other types of hepatitis. The National
Digestive Diseases Information Clearinghouse also
has booklets about hepatitis A and hepatitis B:
● What I need to know about Hepatitis A
● What I need to know about Hepatitis B
You can get a free copy of each of these booklets
by calling 1–800–891–5389 or (301) 654–3810, or by
writing to
NDDIC
2 Information Way
Bethesda, MD 20892–3570
Hepatitis information for health professionals is
also available.

10
Acknowledgments
The individuals listed here provided editorial
guidance or facilitated field testing for this
publication. The National Digestive Diseases
Information Clearinghouse would like to thank
them for their contribution.
Bruce Bacon, M.D.
Chair, Education
Committee
American Liver
Foundation
New York, NY
Luby Garza-
Abijaoude,
M.S., R.D., L.D.
Texas Department
of Health
Austin, TX
Thelma Thiel,
R.N., B.A.
Hepatitis Foundation
International
Silver Spring, MD

11
National Digestive Diseases
Information Clearinghouse
2 Information Way
Bethesda, MD 20892–3570
Phone: 1–800–891–5389 or (301) 654–3810
Fax: (301) 907–8906
Email: nddic@info.niddk.nih.gov
Internet: www.digestive.niddk.nih.gov
The National Digestive Diseases Information Clearinghouse
(NDDIC) is a service of the National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK). The NIDDK
is part of the National Institutes of Health under the U.S.
Department of Health and Human Services. Established in
1980, the clearinghouse provides information about digestive
diseases to people with digestive disorders and to their
families, health care professionals, and the public. NDDIC
answers inquiries, develops and distributes publications, and
works closely with professional and patient organizations and
Government agencies to coordinate resources about digestive
diseases.
Publications produced by the clearinghouse are carefully
reviewed by both NIDDK scientists and outside experts.
This publication is not copyrighted. The clearinghouse
encourages users of this booklet to duplicate and distribute
as many copies as desired.
This booklet is also available at www.digestive.niddk.nih.gov.

U.S. DEPARTMENT OF HEALTH
AND HUMAN SERVICES
National Institutes of Health
National Institute of Diabetes and
Digestive and Kidney Diseases
NIH Publication No. 04–4229
May 2004

How is HIV passed from one person to another?
HIV transmission can occur when blood, semen (cum), pre-seminal fluid (pre-cum),
vaginal fluid, or breast milk from an infected person enters the body of an uninfected
person.
HIV can enter the body through a vein (e.g., injection drug use), the lining of the anus or
rectum, the lining of the vagina and/or cervix, the opening to the penis, the mouth, other
mucous membranes (e.g., eyes or inside of the nose), or cuts and sores. Intact, healthy
skin is an excellent barrier against HIV and other viruses and bacteria.
These are the most common ways that HIV is transmitted from one person to another:
by having sex (anal, vaginal, or oral) with an HIV-infected person; by sharing needles or
injection equipment with an injection drug user who is infected with HIV; or from HIV-
infected women to their babies before or during birth, or through breast-feeding after
birth.
HIV also can be transmitted through receipt of infected blood or blood clotting factors.
However, since 1985, all donated blood in the United States has been tested for HIV.
Therefore, the risk of infection through transfusion of blood or blood products is
extremely low. The U.S. blood supply is considered to be among the safest in the world.
For more information, see How safe is the blood supply in the United States?)
Some health-care workers have become infected after being stuck with needles
containing HIV-infected blood or, less frequently when infected blood comes in contact
with a worker's open cut or is splashed into a worker's eyes or inside their nose. There
has been only one instance of patients being infected by an HIV-infected dentist to his
patients.
For more information, see Are health care workers at risk of getting HIV on the job?
and Are patients in a health care setting at risk of getting HIV? If you would like more
information or have personal concerns, call CDC-INFO 24 Hours/Day at 1-800-CDC-
INFO (232-4636), 1-888-232-6348 (TTY), in English, en Español.
Are health care workers at risk of getting HIV on the job?
The risk of health care workers being exposed to HIV on the job is very low, especially
if they carefully follow universal precautions (i.e., using protective practices and
personal protective equipment to prevent HIV and other blood-borne infections). It is
important to remember that casual, everyday contact with an HIV-infected person
does not expose health care workers or anyone else to HIV. For health care workers
on the job, the main risk of HIV transmission is through accidental injuries from
needles and other sharp instruments that may be contaminated with the virus;

however even this risk is small. Scientists estimate that the risk of infection from a
needle-stick is less than 1 percent, a figure based on the findings of several studies of
health care workers who received punctures from HIV-contaminated needles or were
otherwise exposed to HIV-contaminated blood.
For more information on preventing occupational exposure to HIV, refer to the CDC
fact sheet, “Preventing Occupational HIV Transmission to Healthcare Personnel”
available at http://www.cdc.gov/hiv/resources/factsheets/hcwprev.htm.
Although the most important strategy for reducing the risk of occupational HIV
transmission is to prevent occupational exposures, plans for post-exposure
management of health care personnel should be in place. For guidelines on
management of occupational exposure, refer to the June 29, 2001 Morbidity and
Mortality Weekly Report, “Updated U.S. Public Health Service Guidelines for the
Management of Occupational Exposures to HBV, HCV, and HIV and
Recommendations for Postexposure Prophylaxis” available at
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5011a1.htm.
For more information on HIV and health care workers, visit the health care worker
section of the CDC National Prevention Information Network (NPIN) Web site at
http://www.cdcnpin.org/scripts/population/hcw.asp , or call NPIN at 1-800-458-5231.

How are bloodborne pathogens
spread?
 Bloodborne pathogens are spread through contact with bodily fluids that have been
contaminated with infected blood. These are considered to be Potentially Infectious
Materials (PIMs). Bloodborne pathogens are most commonly spread through:
 Contact with bodily fluids that have potential to transmit disease including:
 Blood
 Semen
 Vaginal secretions
 Amniotic fluid
 Any body fluid contaminated with blood
 Other internal human body fluids
 Cerebrospinal fluid (brain)
 Synovial fluid (joints)
 Pleural fluid (lungs)
 Pericardial fluid (heart)
 Peritoneal fluid (abdomen)
 Sexual contact
 Cuts or punctures of the skin with a contaminated sharp object
 Contact of infected fluids with open cuts or mucous membranes (eyes, nose, mouth, etc.)
 Contact of infected fluids, materials or equipment with inflamed skin, acne or skin abrasions
144

 Materials that are Not potentially infectious include:
 Tears
 Sweat
 Saliva (except during dental procedures when blood is commonly present in the saliva)
 Vomit
 Feces
 Urine
 Nose fluids
 Intact human skin
 How are bloodborne pathogens NOT spread?
 By bloodborne pathogens touching intact skin
 Casual contact such as handshakes, hugging, sneezing, touching doorknobs, using swimming
pools, sitting on toilet seats
145

How do I prevent myself and others from
contracting a bloodborne illness?
 The three most important things
you can do to prevent illness
from bloodborne pathogens are:
 Get vaccinated for Hepatitis B
 Use safe work practices including
Standard Precautions
 Use good hygiene practices
 Each of these will be discussed.
146

Hepatitis B Vaccination
 OSHA regulations require that employers must offer the Hepatitis B vaccine at no cost to any
employee who is exposed to blood or other potentially infectious materials as part of their job
duties. An employee may decline to be vaccinated, but must sign a form provided by the
employer noting the declination.
 Three doses are generally required to complete the hepatitis B vaccine series, although there
is an accelerated two-dose series for adolescents. The typical schedule is as follows:
 First Injection - At any given time
 Second Injection - At least one month after the first dose
 Third Injection - Six months after the first dose
 Your doctor may recommend testing your blood 1-6 months after the vaccines have been
administered to determine if the vaccine has successfully helped you to develop the antibodies
needed to protect you from hepatitis B. If the ‘titer’ is below 10 mIU/mL 1 to 6 months after
the initial vaccination series is completed, you are not considered immune and you may need
an additional dose(s) of the vaccine. If the titer level is still too low after the additional
dose(s), no further doses are typically administered, even if the titer status remains ‘non-
immune’.
147

HEPATITIS B VACCINE
1 What is hepatitis B?
W H A T Y O U N E E D T O K N O W
Hepatitis B is a serious disease that affects the liver.
It is caused by the hepatitis B virus (HBV). HBV
can cause:
Acute (short-term) illness. This can lead to:
• loss of appetite • diarrhea and vomiting
• tiredness • jaundice (yellow skin or eyes)
• pain in muscles, joints, and stomach
Acute illness is more common among adults.
Children who become infected usually do not have
acute illness.
Chronic (long-term) infection. Some people go on
to develop chronic HBV infection. This can be very
serious, and often leads to:
•liver damage (cirrhosis) •liver cancer •death
Chronic infection is more common among infants
and children than among adults. People who are
infected can spread HBV to others, even if they don’t
appear sick.
• In 2005, about 51,000 people became infected with
hepatitis B.
• About 1.25 million people in the United States
have chronic HBV infection.
• Each year about 3,000 to 5,000 people die from
cirrhosis or liver cancer caused by HBV.
Hepatitis B virus is spread through contact with the
blood or other body fluids of an infected person. A
person can become infected by:
- contact with a mother’s blood and body fluids at
the time of birth;
- contact with blood and body fluids through
breaks in the skin such as bites, cuts, or sores;
- contact with objects that could have blood or body
fluids on them such as toothbrushes or razors;
- having unprotected sex with an infected person;
- sharing needles when injecting drugs;
- being stuck with a used needle on the job.
Children and Adolescents
• All children should get their first dose of hepatitis
B vaccine at birth and should have completed the
vaccine series by 6-18 months of age.
• Children and adolescents through 18 years of
age who did not get the vaccine when they were
younger should also be vaccinated.
Adults
• All unvaccinated adults at risk for HBV infection
should be vaccinated. This includes:
- sex partners of people infected with HBV,
- men who have sex with men,
- people who inject street drugs,
- people with more than one sex partner,
- people with chronic liver or kidney disease,
- people with jobs that expose them to human
blood,
- household contacts of people infected with HBV,
- residents and staff in institutions for the
developmentally disabled,
- kidney dialysis patients,
Hepatitis B vaccine can prevent hepatitis B, and
the serious consequences of HBV infection, including
liver cancer and cirrhosis.
Routine hepatitis B vaccination of U.S. children
began in 1991. Since then, the reported incidence of
acute hepatitis B among children and adolescents
has dropped by more than 95% – and by 75% in all
age groups.
Hepatitis B vaccine is made from a part of the hepatitis
B virus. It cannot cause HBV infection.
Hepatitis B vaccine is usually given as a series of 3
or 4 shots. This vaccine series gives long-term
protection from HBV infection, possibly lifelong.
2 Hepatitis B vaccine: Why get
vaccinated?
3 Who should get hepatitis B
vaccine and when?
Many Vaccine Information Statements are available in Spanish and other languages. See www.immunize.org/vis.

- people who travel to countries where hepatitis
B is common,
- people with HIV infection.
• Anyone else who wants to be protected from HBV
infection may be vaccinated.
4 Who should NOT get hepatitis
B vaccine?
• Anyone with a life-threatening allergy to baker’s
yeast, or to any other component of the vaccine,
should not get hepatitis B vaccine. Tell your
provider if you have any severe allergies.
• Anyone who has had a life-threatening allergic
reaction to a previous dose of hepatitis B vaccine
should not get another dose.
• Anyone who is moderately or severely ill when a
dose of vaccine is scheduled should probably wait
until they recover before getting the vaccine.
Your provider can give you more information about
these precautions.
Pregnant women who need protection from HBV
infection may be vaccinated.
5 Hepatitis B vaccine risks
Hepatitis B is a very safe vaccine. Most people do
not have any problems with it.
The following mild problems have been reported:
• Soreness where the shot was given (up to about 1
person in 4).
• Temperature of 99.9°F or higher (up to about 1
person in 15).
Severe problems are extremely rare. Severe allergic
reactions are believed to occur about once in 1.1
million doses.
A vaccine, like any medicine, could cause a serious
reaction. But the risk of a vaccine causing serious
harm, or death, is extremely small. More than 100
million people have gotten hepatitis B vaccine in the
United States.
6 What if there is a moderate or
severe reaction?
8 How can I learn more?
• Ask your doctor or nurse. They can give you the
vaccine package insert or suggest other sources of
information.
• Call your local or state health department.
• Contact the Centers for Disease Control and
Prevention (CDC):
- Call 1-800-232-4636 (1-800-CDC-INFO)
- Visit CDC websites at:
www.cdc.gov/ncidod/diseases/hepatitis
www.cdc.gov/vaccines
www.cdc.gov/travel
7 The National Vaccine Injury
Compensation Program
In the event that you or your child has a serious
reaction to a vaccine, a federal program has been
created to help pay for the care of those who have
been harmed.
For details about the National Vaccine Injury
Compensation Program, call 1-800-338-2382 or visit
their website at www.hrsa.gov/vaccinecompensation.
ddeeppaarrttmmeenntt ooff hheeaalltthh aanndd hhuummaann sseerrvviicceess
Centers for Disease Control and Prevention
Vaccine Information Statement (Interim)
Hepatitis B (7/18/07) 42 U.S.C. § 300aa-26
What should I look for?
• Any unusual condition, such as a high fever or
behavior changes. Signs of a serious allergic
reaction can include difficulty breathing, hoarse-
ness or wheezing, hives, paleness, weakness, a fast
heart beat or dizziness.
What should I do?
• Call a doctor, or get the person to a doctor right
away.
• Tell your doctor what happened, the date and time
it happened, and when the vaccination was given.
• Ask your doctor, nurse, or health department to
report the reaction by filing a Vaccine Adverse
Event Reporting System (VAERS) form.
Or you can file this report through the VAERS
web site at www.vaers.hhs.gov, or by calling
1-800-822-7967.
VAERS does not provide medical advice.

Safe Work Practices
 The first line of defense against bloodborne illness is prevention. The CDC (Center
for Disease Control) has published standard precautions to be used in environments
where exposure to blood or other PIMs is likely.
 Standard precautions are “a set of precautions designed to prevent transmission of human
immunodeficiency virus (HIV), hepatitis B virus (HBV), and other bloodborne pathogens when providing
first aid or health care. Under standard precautions, blood and certain body fluids of all patients are
considered potentially infectious for HIV, HBV and other bloodborne pathogens.“
 Standard Precautions include:
 Proper Hand Washing
 Precautions to prevent injury by needles and other sharp objects
 Treating all human blood and other PIMs as if they are contaminated
 Use of Personal Protective Equipment
 Gloves
 Gowns
 Masks
 Other Protective Barriers
149

 Per the CDC:
“Universal precautions apply to blood, other body fluids containing visible blood, semen, and vaginal
secretions. Universal precautions also apply to tissues and to the following fluids: cerebrospinal, synovial,
pleural, peritoneal, pericardial, and amniotic fluids. Universal precautions do not apply to feces, nasal
secretions, sputum, sweat, tears, urine, and vomitus unless they contain visible blood. Universal precautions do
not apply to saliva except when visibly contaminated with blood or in the dental setting where blood
contamination of saliva is predictable.
Universal precautions involve the use of protective barriers such as gloves, gowns, aprons, masks, or protective
eyewear, which can reduce the risk of exposure of the health care worker's skin or mucous membranes to
potentially infective materials. In addition, under universal precautions, it is recommended that all health care
workers take precautions to prevent injuries caused by needles, scalpels, and other sharp instruments or devices.”
Although not specifically noted in standard precautions, disposable CPR masks are another item that can help
prevent the spread of bloodborne pathogens. A disposable CPR mask should contain a flexible mouth barrier
that prevents physical contact with the victim's face while performing CPR, a breathing tube that facilitates an
open airway during mouth-to-mouth resuscitation and an anti-flux valve to prevent backflow of the victim's
breath or bodily fluids into the mouth or other mucous membrane of the person performing CPR.
150

Proper Hand Washing and Other
Hygiene Safety Practices
 Hand washing is one of the most
effective ways to prevent the spread
of illness and infection. It is important
to wash hands frequently and
correctly.
 The CDC has created an information
sheet on the correct procedures for
hand washing.
 Required Reading Viewing:
 CDC Features Wash Your Hands
the Right Way.
151

Wash Your Hands: The Right Way
Wet your hands with clean running water and apply soap. Use warm water if it is
Hand washing is a simple thing and it's the best way to prevent infection and illness.
Clean hands prevent infections. Keeping hands clean prevents illness at home, at school, and at
work. Hand hygiene practices are key prevention
tools in healthcare settings, in daycare facilities, in schools and public institutions, and for the
safety of our food.
In healthcare settings, hand washing can prevent potentially fatal infections from spreading from
patient to patient and from patient to healthcare worker and vice-versa. The basic rule in the
hospital is to cleanse hands before and after each
patient contact by either washing hands or using an alcohol-based hand rub.
At home, hand washing can prevent infection and illness from spreading from family member to
family member and, sometimes, throughout a community. In the home, the basic rule is to wash
hands before preparing food and after handling uncooked meat and poultry, before eating, after
changing diapers, after coughing, sneezing, or blowing one's nose into a tissue, and after using the
bathroom.
Wash Your Hands: The Right Way
When washing hands with soap and water:
Wet your hands with clean running water and apply soap. Use warm water if it is available.
Rub hands together to make a lather and scrub all surfaces.
Continue rubbing hands for 15-20 seconds.
Need a timer? Imagine singing Happy Birthday twice through to a friend.
Rinse hands well under running water.
Dry your hands using a paper towel or air dryer. If possible, use your paper towel to turn off
the faucet.
Always use soap and water if your hands are visibly dirty.
Apply product to the palm of one hand.
Rub hands together.
Rub the product over all surfaces of hands and fingers until hands are dry.

If soap and clean water are not available, use an alcohol-based hand rub to clean your hands.
Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast-acting.
When using an alcohol-based hand sanitizer:
Apply product to the palm of one hand.
Rub hands together.
Rub the product over all surfaces of hands and fingers until hands are dry.
Hand Washing: The Beginning of Infection Control
Ignaz Semmelweis, an Austrian-Hungarian physician, first demonstrated over 150 years ago that
hand hygiene can prevent the spread of disease. Hand hygiene as a practice includes performing
handwashing, or using antiseptic handwash, alcohol-based hand rub, or surgical hand
hygiene/antisepsis.
Dr. Semmelweis worked in a hospital in Vienna whose
maternity patients were dying at such an alarming rate
that they begged to be sent home. Most of those dying
had been treated by student physicians who worked on
corpses during an anatomy class before beginning their
rounds in a maternity ward.
Because the students did not wash their hands
effectively between touching the dead and the living–
hand washing was an unrecognized hygienic practice at
the time–pathogenic bacteria from the corpses regularly
were transmitted to the mothers via the students' hands.
The result was a death rate five times higher for mothers
who delivered in one clinic of the hospital than for
mothers who delivered at another clinic not attended by
the student physicians.
In an experiment considered quaint at best by his
colleagues, Dr. Semmelweis insisted that his students
wash their hands before treating the mothers–and
deaths on the maternity ward fell fivefold.
Unquestioned today as the most important tool in the healthcare worker's arsenal for preventing
infection, hand washing was not readily accepted in Dr. Semmelweis's era. Indeed, his pleas to
make hand washing a routine practice throughout the hospital were largely met with derision.
Another 50 years would pass before the importance of hand washing as a preventive measure
would be widely accepted by the medical profession.
Sanitation is now a standard and thousands of lives have been saved because of Dr.
Semmelweis's discovery.
1 Semmelweis I. Etiology, concept, and prophylaxis of childbed fever. Carter KC, ed. 1st ed.
Madison, WI: The University of Wisconsin Press, 1983.
12/9/2008 http://www.cdc.gov/Features/HandWashing/
Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232-4636) TTY: (888) 232-6348, 24 Hours/Every Day - cdcinfo@cdc.gov

 Other Hygiene Safety Practices
 Never eat, drink, smoke, apply cosmetics or lip balm, or handle contact lenses in an area of likely exposure
 Never store food or drinks near PIMs
 Minimize splashing, spraying, or splattering when handling PIMs
 Always dispose of lancets, insulin syringes and other sharps in a sharps container
 When emptying trash, never use your hands to compact the trash
 Carry trash bags away from your body
 When working with human blood or other PIMs:
 Minimize splashing or spraying of human blood or other PIMs
 Mouth pipetting/suctioning of blood or other potentially infectious materials is prohibited
 Place specimens of blood or other potentially infectious materials in a leak-proof, non-breakable container for collection, handling, processing,
storage, transport, or shipping
 Correctly color-code and/or label with the biohazard symbol any container for storage, transport, or shipping of blood or other PIMs
 If outside contamination of the primary container occurs, the primary container is to be placed within a second container which prevents leakage
during handling, processing, storage, transport, or shipping and appropriately label or color-code this container
 Affix biohazard symbols to containers of regulated waste, refrigerators, and freezers
 Keep waste containers near the area where work with human blood or other PIMs is being performed
 Never overfill waste containers
 Wash hands frequently, even if gloves have been worn
152

 In an work area where blood or other PIMs will be handled or stored, hand and
skin washing and eye washing facilities are to be provided in a location that is
readily accessible to staff.
 If facilities are not feasible, then either an appropriate antiseptic hand cleanser and
clean cloth/paper towels or antiseptic towelettes are to be provided.
 After use of the antiseptic cleansers or towelettes, hands and contaminated skin
need to be washed with soap and running water as soon as possible.
153

Sharps Safety
 Employees working with children and adults with disabilities may come into contact
with ‘sharps’ – most commonly needles and lancets. Needlesticks or cuts with
contaminated objects can cause infection from a bloodborne pathogen. Proper
handling and disposal of sharps is essential to prevent exposure to such bloodborne
pathogens as HIV, HBV and HCV.
The Needlestick Safety and Prevention Act changes the bloodborne pathogen
standard to include terminology requiring ‘safer medical devices, such as sharps
with engineered sharps injury protections and needleless systems’ be used.
There are many products and needles available that promote safe use and disposal
of needles, lancets and other sharps after use. Safer products include needles that
retract, sheathe or blunt immediately after use.
154

 Needles, lancets used to obtain a drop of blood for blood glucose testing for
persons with diabetes and other sharps must be discarded in leak-proof, puncture-
resistant containers that are red, have a lid, are maintained in an upright position to
prevent leaks and are appropriately marked. The lid is required on this container to
ensure safe transporting of the container. Be sure the container is not overfilled,
since it is important that the lid close tightly. Having sharps disposal containers
properly marked and located also can help prevent accidents.
Safety conscious organizations work to eliminate hazards, use engineering controls
(such as needles that retract) use administrative controls (such as policies and
procedures for staff to follow to reduce exposure to hazards), use of work practice
controls (such as having and using the means to safely use and dispose of sharps,
and use of Personal Protective Equipment (PPE) when appropriate.
There are many good resources to help you protect yourself and others when
handling needles and other sharp objects. Below are three resources that are
required reading for this section.
155

A needlestick or a cut from a contaminated scapel can lead
to infection from hepatitis B virus (HBV) or human
immunodeficiency virus (HIV) which causes AIDS.
Although few cases of AIDS have been documented from
occupational exposure, approximately 8,700 health care
workers each year contract hepatitis B. About 200 will
die as a result. The new OSHA standard covering
bloodborne pathogens specifies measures to reduce these
risks of infection.
PROMPT DISPOSAL
The best way to prevent cuts and sticks is to
minimize contact with sharps. That means disposing of
them immediately after use. Puncture-resistant containers
must be available nearby to hold contaminated sharps--
either for disposal or, for reusable sharps, later
decontamination for re-use. When reprocessing
contaminated reusable sharps, employees must not reach
by hand into the holding container. Contaminated sharps
must never be sheared or broken.
Recapping, bending, or removing needles is
permissible only if there is no feasible alternative or if
required for a specific medical procedure such as blood
gas analysis. If recapping, bending, or removal is
necessary, workers must use either a mechanical device or
a one-handed technique. If recapping is essential--for
example, between multiple injections for the same patient-
-employees must avoid using both hands to recap.
Employees might recap with a one-handed scoop
technique, using the needle itself to pick up the cap,
pushing cap and sharp together against a hard surface to
ensure a tight fit. Or they might hold the cap with tongs or
forceps to place it on the needle.
SHARPS CONTAINERS
Containers for used sharps must be puncture
resistant. The sides and the bottom must be leakproof.
They must be labeled or color coded red to ensure that
everyone knows the contents are hazardous. Containers
for disposable sharps must have a lid, and they must be
maintained upright to keep liquids and the sharps inside.
Employees must never reach by hand into
containers of contaminated sharps. Containers for
reusable sharps could be equipped with wire basket liners
for easy removal during reprocessing, or employees could
use tongs or forceps to withdraw the contents. Reusable
sharps disposal containers may not be opened, emptied,
or cleaned manually.
Containers need to be located as near to as
feasible the area of use. In some cases, they may be
placed on carts to prevent access to mentally disturbed or
pediatric patients. Containers also should be available
wherever sharps may be found, such as in laundries. The
containers must be replaced routinely and not be
overfilled, which can increase the risk of needlesticks or
cuts.
HANDLING CONTAINERS
When employees are ready to discard containers’
they should first close the lids. If there is a chance of
leakage from the primary container, the employees should
use a secondary container that is closable, labeled, or
color coded and leak resistant.
Careful handling of sharps can prevent injury and
reduce the risk of infection. By following these work
practices, employees can decrease their chances of
contracting bloodborne illness.
This a one of a series of fact sheets that discusses various requirements of the Occupational Safety and Health Administration’s standard covering exposure to
bloodborne pathogens. Single copies of fact sheets are available from OSHA Publications, Room N-3101, 200 Constitution Avenue, N.W., Washington DC
20210 and from OSHA regional offices.

Public Law 106-430
106th Congress
Needlestick Safety and Prevention Act
To require changes in the bloodborne pathogens standard in effect under the
Occupational Safety and Health Act of 1970. NOTE: Nov. 6,2000 - [H.R. 5178]
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress NOTE: Needlestick Safety and
Prevention Act. assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Needlestick Safety and Prevention Act''.
SEC. 2. FINDINGS.
The Congress finds the following:
(1) Numerous workers who are occupationally exposed to
bloodborne pathogens have contracted fatal and other serious
viruses and diseases, including the human immunodeficiency virus
(HIV), hepatitis B, and hepatitis C from exposure to blood and
other potentially infectious materials in their workplace.
(2) In 1991 the Occupational Safety and Health
Administration issued a standard regulating occupational
exposure to bloodborne pathogens, including the human
immunodeficiency virus, (HIV), the hepatitis B virus (HBV), and
the hepatitis C virus (HCV).
(3) Compliance with the bloodborne pathogens standard has
significantly reduced the risk that workers will contract a
bloodborne disease in the course of their work.
(4) Nevertheless, occupational exposure to bloodborne
pathogens from accidental sharps injuries in health care
settings continues to be a serious problem. In March 2000, the
Centers for Disease Control and Prevention estimated that more
than 380,000 percutaneous injuries from contaminated sharps
occur annually among health care workers in United States
hospital settings. Estimates for all health care settings are
that 600,000 to 800,000 needlestick and other percutaneous
injuries occur among health care workers annually. Such injuries
can involve needles or other sharps contaminated with bloodborne
pathogens, such as HIV, HBV, or HCV.
(5) Since publication of the bloodborne pathogens standard
in 1991 there has been a substantial increase in the number and
assortment of effective engineering controls available to
employers. There is now a large body of research and data
concerning the effectiveness of newer engineering controls,
including safer medical devices.
(6) 396 interested parties responded to a Request for
Information (in this section referred to as the ``RFI'')
conducted by the Occupational Safety and Health Administration in 1998 on
engineering and work practice controls used to eliminate or
minimize the risk of occupational exposure to bloodborne
pathogens due to percutaneous injuries from contaminated sharps.
Comments were provided by health care facilities, groups
representing healthcare workers, researchers, educational
institutions, professional and industry associations, and
manufacturers of medical devices.
(7) Numerous studies have demonstrated that the use of safer
medical devices, such as needleless systems and sharps with
engineered sharps injury protections, when they are part of an

overall bloodborne pathogens risk-reduction program, can be
extremely effective in reducing accidental sharps injuries.
(8) In March 2000, the Centers for Disease Control and
Prevention estimated that, depending on the type of device used
and the procedure involved, 62 to 88 percent of sharps injuries
can potentially be prevented by the use of safer medical
devices.
(9) The OSHA 200 Log, as it is currently maintained, does
not sufficiently reflect injuries that may involve exposure to
bloodborne pathogens in healthcare facilities. More than 98
percent of healthcare facilities responding to the RFI have
adopted surveillance systems in addition to the OSHA 200 Log.
Information gathered through these surveillance systems is
commonly used for hazard identification and evaluation of
program and device effectiveness.
(10) Training and education in the use of safer medical
devices and safer work practices are significant elements in the
prevention of percutaneous exposure incidents. Staff involvement
in the device selection and evaluation process is also an
important element to achieving a reduction in sharps injuries,
particularly as new safer devices are introduced into the work
setting.
(11) Modification of the bloodborne pathogens standard is
appropriate to set forth in greater detail its requirement that
employers identify, evaluate, and make use of effective safer
medical devices.
SEC. 3. BLOODBORNE PATHOGENS STANDARD.
The bloodborne pathogens standard published at 29 CFR 1910.1030 shall be
revised as follows:
(1) The definition of `Èngineering Controls'' (at 29 CFR
1910.1030(b)) shall include as additional examples of controls
the following: ``safer medical devices, such as sharps with
engineered sharps injury protections and needleless systems''.
(2) The term ``Sharps with Engineered Sharps Injury
Protections'' shall be added to the definitions (at 29 CFR
1910.1030(b)) and defined as `à nonneedle sharp or a needle
device used for withdrawing body fluids, accessing a vein or
artery, or administering medications or other fluids, with a
built-in safety feature or mechanism that effectively reduces
the risk of an exposure incident''.
(3) The term ``Needleless Systems'' shall be added to the
definitions (at 29 CFR 1910.1030(b)) and defined as `à device
that does not use needles for: (A) the collection of bodily
fluids or withdrawal of body fluids after initial venous or
arterial access is established; (B) the administration of
medication or fluids; or (C) any other procedure involving the potential
for occupational exposure to bloodborne pathogens due to percutaneous
injuries from contaminated sharps''.
(4) In addition to the existing requirements concerning
exposure control plans (29 CFR 1910.1030(c)(1)(iv)), the review
and update of such plans shall be required to also--
(A) ``reflect changes in technology that eliminate
or reduce exposure to bloodborne pathogens''; and
(B) ``document annually consideration and
implementation of appropriate commercially available and
effective safer medical devices designed to eliminate or
minimize occupational exposure''.
(5) The following additional recordkeeping requirement shall be
added to the bloodborne pathogens standard at 29 CFR 1910.1030(h): ``The

employer shall establish and maintain a sharps injury log for the
recording of percutaneous injuries from contaminated sharps. The
information in the sharps injury log shall be recorded and maintained in
such manner as to protect the confidentiality of the injured
employee. The sharps injury log shall contain, at a minimum--
``(A) the type and brand of device involved in the
incident,
``(B) the department or work area where the exposure
incident occurred, and
``(C) an explanation of how the incident
occurred.''.
The requirement for such sharps injury log shall not apply to
any employer who is not required to maintain a log of
occupational injuries and illnesses under 29 CFR 1904 and the
sharps injury log shall be maintained for the period required by
29 CFR 1904.6.
(6) The following new section shall be added to the
bloodborne pathogens standard: ``An employer, who is required to
establish an Exposure Control Plan shall solicit input from non-
managerial employees responsible for direct patient care who are
potentially exposed to injuries from contaminated sharps in the
identification, evaluation, and selection of effective
engineering and work practice controls and shall document the
solicitation in the Exposure Control Plan.''.
SEC. 4. EFFECT OF MODIFICATIONS.
The modifications under section 3 shall be in force until superseded
in whole or in part by regulations promulgated by the Secretary of Labor
under section 6(b) of the Occupational Safety and Health Act of 1970 (29
U.S.C. 655(b)) and shall be enforced in the same manner and to the same
extent as any rule or regulation promulgated under section 6(b).
SEC. 5. PROCEDURE AND EFFECTIVE DATE.
(a) Procedure.--The modifications of the bloodborne pathogens
standard prescribed by section 3 shall take effect without regard to the
procedural requirements applicable to regulations promulgated under
section 6(b) of the Occupational Safety and Health Act of 1970 (29
U.S.C. 655(b)) or the procedural requirements of chapter 5 of title 5,
United States Code.
(b) Effective Date.--The modifications to the bloodborne pathogens
standard required by section 3 shall--
(1) NOTE: Deadline. Federal Register,
publication. within 6 months of the date of the enactment of
this Act, be made and published in the Federal Register by the
Secretary of Labor acting through the Occupational Safety and
Health Administration; and
(2) at the end of 90 days after such publication, take
effect.
Approved November 6, 2000.
LEGISLATIVE HISTORY--H.R. 5178:
---------------------------------------------------------------------------
CONGRESSIONAL RECORD, Vol. 146 (2000):
Oct. 3, considered and passed House.
Oct. 26, considered and passed Senate.
WEEKLY COMPILATION OF PRESIDENTIAL DOCUMENTS, Vol. 36 (2000):
Nov. 6, Presidential statement.

 Although disposal of sharps in an individual’s home is not
regulated by OSHA, proper disposal of needles, lancets and
other sharps at home is still important. In order to protect
anyone who may handle household waste, individuals in the
home should be aware of ways to safely dispose of sharps.
When an individual with a disability lives in their own home,
staff may have the opportunity to teach acceptable disposal
options for sharps in the home.
 The Ohio EPA offers tips for disposal of such items.
157

Disposal Tips for Household
Generated “Sharps”
Disposing of loose needles and syringes
(sharps) into household trash poses a risk to
family members and solid waste workers who
must handle the waste. While Ohio law allows
the disposal of sharps used by an individual
for purposes of their own care or treatment into
the solid waste stream, it is important to
recognize the hazard they pose to solid waste
workers who handle waste containers without
knowledge of the contents.
Sharps should be packaged to minimize
opportunity for contact injury. Needles and
syringes should be discarded intact after use.
Needles should never be bent, broken, or
manipulated by hand. If the purchase of a
medical grade sharps container is too costly,
there are various alternatives for safe disposal.
What are sharps?
Sharps include lancets, hypodermic needles,
syringes, scalpel blades and broken glass
articles (other than household items).
Who is a home sharp user?
A person who generates sharp wastes for the
purpose of their own care or treatment. For
example, an insulin dependent diabetic or a
terminally ill person being cared for by family
members at home.
What are my alternatives to a
purchased sharps
Container?
Use a rigid, leak-proof, puncture resistant
container with a tight fitting lid. Common
household containers that match this description
include detergent bottles, bleach bottles, two
liter bottles, plastic juice containers and coffee
cans (if the lid is securely taped to the can).
Glass containers are not recommended for use
as sharps containers because the glass may
break and spill the contents. Plastic milk jugs
make poor sharps containers because the plastic
used in these containers is thin and sharps
easily poke through.
In addition, milk jugs do not always have a tight
fitting lid. Label any container used to dispose of
sharps with the word “SHARPS” on all sides of
the container in big block letters. Labeling the
container will convey the potential hazard inside
to the solid waste worker or recycling facility.
What are some other
disposal alternatives for
Sharps?
Inquire with the company or pharmacy where you
purchase your medical supplies regarding
disposal alternatives. Some have programs to
accept sharps containers, free or for a nominal
fee, which are then treated and disposed. Your
local health department may also be aware of
available disposal alternatives. Also, home users
may have the sharps picked-up by a commercial
service.
Some communities offer special pickup on
designated days of the month. Landfills may
accept sharps containers directly at the landfill in
an effort to reduce the number of sharps in the
solid waste and the risk to the sanitation worker.
Some hospitals will take sharp wastes generated
by an individual for purposes of their own
treatment or care.
Why is it allowable to throw
sharps into the trash and not
properly package them?
Infectious waste generated by an individual for the
purposes of their own care or treatment at home is
exempt from the infectious wastes regulations.
However, it is strongly encouraged that all
infectious wastes be packaged in an appropriate
container and labeled to convey its potential
hazard.
You may contact your local solid waste hauler to
ask about their policy pertaining to accepting
sharps containers.

Use of Personal Protective Equipment
(PPE)
 Personal protective equipment includes specialized clothing worn to protect against a hazard. This includes
such items as gloves, masks, face shields and gowns.
Employers are required to provide necessary personal protective equipment. The type of personal
protective equipment provided and used must be suitable and “the level of protection must fit the expected
exposure.” For example, someone who is unlikely to be splashed but may need to handle blood or other
PIM, might only need to wear gloves. They would not be expected to use more extensive protection such as
a mask or gown.
It is essential that employees:
 Know where PPEs are located
 Know when to use a PPE
 Know what PPE is correct for the situation
 Know the proper way to remove and dispose of the PPE
 Change gloves after use on each person
 Wash hands after removing a PPE
 Gloves are the most common PPE used in healthcare settings. For proper removal of gloves and additional
information on PPEs, please click the links below.
159

Required Reading
 Required Reading
 CDC Glove Removal PPE Selection
 CDC Poster: Donning Removal of
PPEs
 OSHA Fact Sheet: Personal
Protective Equipment Cuts Risk -
BBFacts03
160

32
How to Remove Gloves (1)
• Grasp outside edge near
wrist
• Peel away from hand,
turning glove inside-out
• Hold in opposite gloved
hand
PPE Use in Healthcare Settings
Using one gloved hand, grasp the outside of the opposite glove near the wrist. Pull
and peel the glove away from the hand. The glove should now be turned inside-out,
with the contaminated side now on the inside. Hold the removed glove in the
opposite gloved hand.

33
How to Remove Gloves (2)
• Slide ungloved finger
under the wrist of the
remaining glove
• Peel off from inside,
creating a bag for both
gloves
• Discard
Slide one or two fingers of the ungloved hand under the wrist of the remaining
glove. Peel glove off from the inside, creating a bag for both gloves. Discard in
waste container.

38
Hand Hygiene
• Perform hand hygiene immediately after
removing PPE.
– If hands become visibly contaminated during PPE
removal, wash hands before continuing to remove PPE
• Wash hands with soap and water or use an
alcohol-based hand rub
* Ensure that hand hygiene facilities are available at the point
needed, e.g., sink or alcohol-based hand rub
Hand hygiene is the cornerstone of preventing infection transmission. You should
perform hand hygiene immediately after removing PPE. If your hands become
visibly contaminated during PPE removal, wash hands before continuing to remove
PPE. Wash your hands thoroughly with soap and warm water or, if hands are not
visibly contaminated, use an alcohol-based hand rub.

42
PPE for Standard Precautions (1)
• Gloves – Use when touching blood, body
fluids, secretions, excretions, contaminated
items; for touching mucus membranes and
nonintact skin
• Gowns – Use during procedures and patient
care activities when contact of clothing/
exposed skin with blood/body fluids,
secretions, or excretions is anticipated
Under Standard Precautions, gloves should be used when touching blood, body
fluids, secretions, excretions, or contaminated items and for touching mucous
membranes and nonintact skin. A gown should be used during procedures and
patient care activities when contact of clothing and/or exposed skin with blood,
body fluids, secretions, or excretions is anticipated. Aprons are sometimes used as
PPE over scrubs, such as in hemodialysis centers when inserting a needle into a
fistula.

43
PPE for Standard Precautions (2)
• Mask and goggles or a face shield – Use
during patient care activities likely to generate
splashes or sprays of blood, body fluids,
secretions, or excretions
Mask and goggles or a face shield should be used during patient care activities
that are likely to generate splashes and sprays of blood, body fluids, secretions, or
excretions.

45
What Type of PPE Would You Wear?
• Giving a bed bath?
• Generally none
• Suctioning oral secretions?
• Gloves and mask/goggles or a
face shield – sometimes gown
• Transporting a patient in a
wheel chair?
• Generally none required
• Responding to an emergency
where blood is spurting?
• Gloves, fluid-resistant gown,
mask/goggles or a face shield
• Drawing blood from a vein?
• Gloves
• Cleaning an incontinent patient
with diarrhea?
• Gloves w/wo gown
• Irrigating a wound?
• Gloves, gown, mask/goggles
or a face shield
• Taking vital signs?
– Generally none
Listed here are several patient care activities that could indicate a need to wear PPE.
What PPE would you wear for the following?
Giving a bed bath? (generally none)
Suctioning oral secretions? (gloves and mask/goggles or a face shield) (Respondents
may correctly note that this may depend on whether open or closed suction is being
used)
Transporting a patient in a wheelchair? (generally none)
Responding to an emergency where blood is spurting? (gloves, fluid-resistant gown,
and mask/goggles or a face shield)
Drawing blood from a vein? (gloves)
Cleaning an incontinent patient with diarrhea? (gloves and generally a gown)
Irrigating a wound? (gloves, gown, and mask/goggles or a face shield)
Taking vital signs? (generally none)

49
PPE Use in Healthcare Settings:
Final Thoughts
• PPE is available to protect you from exposure
to infectious agents in the healthcare
workplace
• Know what type of PPE is necessary for the
duties you perform and use it correctly
These are a few final thoughts before ending today’s presentation. Remember, PPE
is available to protect you from exposure to infectious agents during healthcare. It
is important that you know what type of PPE is necessary for the procedures you
perform AND that you use it correctly.

SEQUENCE FOR DONNING PERSONAL
PROTECTIVE EQUIPMENT (PPE)
SECUENCIA PARA PONERSE EL EQUIPO
DE PROTECCIÓN PERSONAL (PPE)
1. GUANTES
■ ¡El exterior de los guantes está contaminado!
■ Agarre la parte exterior del guante con la mano
opuesta en la que todavía tiene puesto el guante
y quíteselo
■ Sostenga el guante que se quitó con la mano
enguantada
■ Deslice los dedos de la mano sin guante por
debajo del otro guante que no se ha quitado
todavía a la altura de la muñeca
■ Quítese el guante de manera que acabe
cubriendo el primer guante
■ Arroje los guantes en el recipiente de deshechos
2. GAFAS PROTECTORAS O CARETA
■ ¡El exterior de las gafas protectoras o de la
careta está contaminado!
■ Para quitárselas, tómelas por la parte de la banda
de la cabeza o de las piezas de las orejas
■ Colóquelas en el recipiente designado para
reprocesar materiales o de materiales de deshecho
3. BATA
■ ¡La parte delantera de la bata y las mangas
están contaminadas!
■ Desate los cordones
■ Tocando solamente el interior de la bata, pásela
por encima del cuello y de los hombros
■ Voltee la bata al revés
■ Dóblela o enróllela y deséchela
4. MÁSCARA O RESPIRADOR
■ La parte delantera de la máscara o respirador
está contaminada — ¡NO LA TOQUE!
■ Primero agarre la parte de abajo, luego los
cordones o banda elástica de arriba y por último
quítese la máscara o respirador
■ Arrójela en el recipiente de deshechos
The type of PPE used will vary based on the level of precautions
required; e.g., Standard and Contact, Droplet or Airborne Infection
Isolation.
USE SAFE WORK PRACTICES TO PROTECT YOURSELF
AND LIMIT THE SPREAD OF CONTAMINATION
■ Keep hands away from face
■ Limit surfaces touched
■ Change gloves when torn or heavily contaminated
■ Perform hand hygiene
El tipo de PPE que se debe utilizar depende del nivel de precaución
que sea necesario; por ejemplo, equipo Estándar y de Contacto o
de Aislamiento de infecciones transportadas por gotas o por aire.
UTILICE PRÁCTICAS DE TRABAJO SEGURAS PARA PROTEGERSE USTED
MISMO Y LIMITAR LA PROPAGACIÓN DE LA CONTAMINACIÓN
■ Mantenga las manos alejadas de la cara
■ Limite el contacto con superficies
■ Cambie los guantes si se rompen o están demasiado contaminados
■ Realice la higiene de las manos
1. GLOVES
■ Outside of gloves is contaminated!
■ Grasp outside of glove with opposite gloved
hand; peel off
■ Hold removed glove in gloved hand
■ Slide fingers of ungloved hand under remaining
glove at wrist
■ Peel glove off over first glove
■ Discard gloves in waste container
2. GOGGLES OR FACE SHIELD
■ Outside of goggles or face shield is
contaminated!
■ To remove, handle by head band or
ear pieces
■ Place in designated receptacle for
reprocessing or in waste container
3. GOWN
■ Gown front and sleeves are contaminated!
■ Unfasten ties
■ Pull away from neck and shoulders, touching
inside of gown only
■ Turn gown inside out
■ Fold or roll into a bundle and discard
4. MASK OR RESPIRATOR
■ Front of mask/respirator is contaminated —
DO NOT TOUCH!
■ Grasp bottom, then top ties or elastics and
remove
■ Discard in waste container
1. GOWN
■ Fully cover torso from neck to knees, arms to end
of wrists, and wrap around the back
■ Fasten in back of neck and waist
2. MASK OR RESPIRATOR
■ Secure ties or elastic bands at middle of head
and neck
■ Fit flexible band to nose bridge
■ Fit snug to face and below chin
■ Fit-check respirator
3. GOGGLES OR FACE SHIELD
■ Place over face and eyes and adjust to fit
4. GLOVES
■ Extend to cover wrist of isolation gown
1. BATA
■ Cubra con la bata todo el torso desde el cuello
hasta las rodillas, los brazos hasta la muñeca y
dóblela alrededor de la espalda
■ Átesela por detrás a la altura del cuello y la cintura
2. MÁSCARA O RESPIRADOR
■ Asegúrese los cordones o la banda elástica en la
mitad de la cabeza y en el cuello
■ Ajústese la banda flexible en el puente de la nariz
■ Acomódesela en la cara y por debajo del mentón
■ Verifique el ajuste del respirador
3. GAFAS PROTECTORAS O CARETAS
■ Colóquesela sobre la cara y los ojos y ajústela
4. GUANTES
■ Extienda los guantes para que cubran la parte del
puño en la bata de aislamiento
Except for respirator, remove PPE at doorway or in anteroom.
Remove respirator after leaving patient room and closing door.
Con la excepción del respirador, quítese el PPE en la entrada de la
puerta o en la antesala. Quítese el respirador después de salir de la
habitación del paciente y de cerrar la puerta.
SEQUENCE FOR REMOVING PERSONAL
PROTECTIVE EQUIPMENT (PPE)
SECUENCIA PARA QUITARSE EL EQUIPO
DE PROTECCIÓN PERSONAL (PPE)
PERFORM HAND HYGIENE IMMEDIATELY AFTER REMOVING ALL PPE EFECTÚE LA HIGIENE DE LAS MANOS INMEDIATAMENTE DESPUÉS
DE QUITARSE CUALQUIER EQUIPO DE PROTECCIÓN PERSONAL

Wearing gloves, gowns, masks, and eye protection can significantly reduce
health risks for workers exposed to blood and other potentially infectious
materials. The new OSHA standard covering bloodborne disease requires
employers to provide appropriate personal protective equipment (PPE) and
clothing free of charge to employees.
Workers who have direct exposure to blood and other potentially
infectious materials on their jobs run the risk of contracting bloodborne
infections from hepatitis B virus (HBV), human immunodeficiency virus (HIV)
which causes AIDS, and other pathogens. About 8,700 health care workers
each year are infected with HBV, and 200 die from the infection. Although the
risk of contracting AIDS through occupational exposure is much lower,
wearing proper personal protective equipment can greatly reduce potential
exposure to all bloodborne infections.
SELECTING PPE
Personal protective clothing and equipment must be suitable. This
means the level of protection must fit the expected exposure. For example,
gloves would be sufficient for a laboratory technician who is drawing blood,
whereas a pathologist conducting an autopsy would need considerably more
protective clothing.
PPE may include gloves, gowns, laboratory coats, face shields or
masks, eye protection, pocket masks, and other protective gear. The gear must
be readily accessible to employees and available in appropriate sizes.
If an employee is expected to have hand contact with blood or other
potentially infectious materials or contaminated surfaces, he or she must wear
gloves. Single use gloves cannot be washed or decontaminated for reuse.
Utility gloves may be decontaminated if they are not compromised. They
should be replaced when they show signs of cracking, peeling, tearing,
puncturing, or deteriorating. If employees are allergic to standard gloves, the
employer must provide hypoallergenic gloves or similar alternatives.
Routine gloving is not required for phlebotomy in voluntary blood
donation centers, though it is necessary for all other phlebotomies. In any case,
gloves must be available in voluntary blood donation centers for employees
who want to use them. Workers in voluntary blood donation centers must use
gloves (1) when they have cuts, scratches or other breaks in their skin, (2)
while they are in training; and (3) when they believe contamination might
occur.
Employees should wear eye and mouth protection such as goggles
and masks, glasses with solid side shields, and masks or chin-length face
shields when splashes, sprays, splatters, or droplets of potentially infectious
materials pose a hazard through the eyes, nose or mouth. More extensive
coverings such as gowns, aprons, surgical caps and hoods, and shoe covers or
boots are needed when gross contamination is expected. This often occurs, for
example, during orthopedic surgery or autopsies.
Employers must provide the PPE and ensure that their workers wear
it. This means that if a lab coat
is considered
PPE, it must be
supplied by the employer rather than the employee. The employer also must
clean or launder clothing and equipment and repair or replace it as necessary.
Additional protective measures such as using PPE in animal rooms
and decontaminating PPE before laundering are essential in facilities that
conduct research on HIV or HBV.
EXCEPTION
There is one exception to the requirement for protective gear. An
employee may choose, temporarily and briefly, under rare and
extraordinary circumstances, to forego the equipment. It must be the
employee's professional judgment that using the protective equipment would
prevent the delivery of health care or public safety services or would pose an
increased hazard to the safety of the worker or co-worker. When one of these
excepted situations occurs, employers are to investigate and document the
circumstances to determine if there are ways to avoid it in the future. For
example, if a firefighter's resuscitation device is damaged, perhaps another
type of device should be used or the device should be carried in a different
manner. Exceptions must be limited--this is not a blanket exemption.
DECONTAMINATING AND DISPOSING OF PPE
Employees must remove personal protective clothing and equipment
before leaving the work area or when the PPE becomes contaminated. If a
garment is penetrated, workers must remove it immediately or as soon as
feasible. Used protective clothing and equipment must be placed in designated
containers for storage, decontamination, or disposal.
OTHER PROTECTIVE PRACTICES
If an employee's skin or mucous membranes come into contact with
blood, he or she is to wash with soap and water and flush eyes with water as
soon as feasible. In addition, workers must wash their hands immediately or as
soon as feasible after removing protective equipment. If soap and water are
not immediately available, employers may provide other handwashing
measures such as moist towelettes. Employees still must wash with soap and
water as soon as possible.
Employees must refrain from eating, drinking, smoking, applying
cosmetics or lip balm, and handling contact lenses in areas where they may be
exposed to blood or other potentially infectious materials.
___________________________________________________________________________________________________________________________________________
This is one of a series of fact sheets that discusses various requirements of the Occupational Safety and Health Administration's standard covering exposure to
bloodborne pathogens. Single copies of fact sheets are available from OSHA Publications, Room N-3101, 200 Constitution Avenue, N. W, Washington DC 20210 and
from OSHA regional offices.

Keeping work areas in a clean and sanitary condition reduces employees'
risk of exposure to bloodborne pathogens. Each year about 8,700 health
care workers are infected with hepatitis B virus, and 200 die from
contracting hepatitis B through their work. The chance of contracting
human immunodeficiency virus (HIV), the bloodborne pathogen which
causes AIDS, from occupational exposure is small, yet a good
housekeeping program can minimize this risk as well.
DECONTAMINATION
Every employer whose employees are exposed to blood or other potentially
infectious materials must develop a written schedule for cleaning each
area where exposures occur. The methods of
decontaminating different surfaces must be specified, determined by the
type of surface to be cleaned, the soil present and the tasks or procedures
that occur in that area.
For example, different cleaning and decontamination measures would be
used for a surgical operatory and a patient room. Similarly, hard surfaced
flooring and carpeting require separate cleaning methods. More extensive
efforts will be necessary for gross contamination than for minor spattering.
Likewise, such varied tasks as laboratory analyses and normal patient care
would require different techniques for clean-up.
Employees must decontaminate working surfaces and equipment with an
appropriate disinfectant after completing procedures involving exposure to
blood. Many laboratory procedures are performed on a continual basis
throughout a shift. Except as discussed below, it is not necessary to clean
and decontaminate between procedures. However, if the employee leaves
the area for a period of time, for a break or lunch, then contaminated work
surfaces must be cleaned.
Employees also must clean (1) when surfaces become obviously
contaminated; (2) after any spill of blood or other potentially infectious
materials; and (3) at the end of the work shift if contamination might have
occurred. Thus, employees need not decontaminate the work area after
each patient care procedure, but only after those that actually result in
contamination.
If surfaces or equipment are draped with protective coverings such as
plastic wrap or aluminum foil, these coverings should be removed or
replaced if they become obviously contaminated. Reusable receptacles
such as bins, pails and cans that are likely to become contaminated must
be inspected and decontaminated on a regular basis. If contamination is
visible, workers must clean and decontaminate the item immediately, or
as soon as feasible.
Should glassware that may be potentially contaminated break, workers
need to use mechanical means such as a brush and dustpan or tongs or
forceps to pick up the broken glass--never by hand, even when wearing
gloves.
Before any equipment is serviced or shipped for repairing or cleaning, it
must be decontaminated to the extent possible. The equipment must be
labeled, indicating which portions are still contaminated. This enables
employees and those who service the equipment to take appropriate
precautions to prevent exposure.
REGULATED WASTE
In addition to effective decontamination of work areas, proper handling of
regulated waste is essential to prevent unnecessary exposure to blood and
other potentially infectious materials. Regulated waste must be handled
with great care --i.e., liquid or semi liquid blood and other potentially
infectious materials, items caked with these materials, items that would
release blood or other potentially infected materials if compressed,
pathological or microbiological wastes containing them and contaminated
sharps.
Containers used to store regulated waste must be closable and suitable to
contain the contents and prevent leakage of fluids. Containers designed
for sharps also must be puncture resistant. They must be labeled or color-
coded to ensure that employees are aware of the potential hazards. Such
containers must be closed before removal to prevent the contents from
spilling. If the outside of a container becomes contaminated, it must be
placed within a second suitable container.
Regulated waste must be disposed of in accordance with applicable state
and local laws.
LAUNDRY
Laundry workers must wear gloves and handle contaminated laundry as
little as possible, with a minimum of agitation. Contaminated laundry
should be bagged or placed in containers at the location where it is used,
but not sorted or rinsed there.
Laundry must be transported within the establishment or to outside
laundries in labeled or red color-coded bags. If the facility uses Universal
Precautions for handling all soiled laundry, then alternate labeling or
color coding that can be recognized by the employees may be used. If
laundry is wet and it might soak through laundry bags, then workers
must use bags that prevent leakage to transport it.
RESEARCH FACILITIES
More stringent decontamination requirements apply to research
laboratories and production facilities that work with concentrated strains
of HIV and HBV.
________________________________________________________________________________________________________________________
This is one of a series of fact sheets that discusses various requirements of the Occupational Safety and Health Adninistration's standard covering exposure to
bloodborne pathogens. Single copies of fact sheets are available from OSHA Publications, Room N-3101, 20O Constitution Avenue,N.W., Washington, DC 20210 and

Engineering Controls
 Engineering controls include such safety controls as sharps disposal containers, self-sheathing needles, safer
medical devices, such as sharps with engineered sharps injury protections and needleless systems that isolate
or remove the bloodborne pathogens hazard from the workplace. Engineering controls are used to maintain
a safe environment for employees and individuals who the facility serves.
 Proper labeling and signage for potential biohazards
 The Bloodborne Pathogens Standard clearly states the requirements for labeling. They are as follows:
 Labels
Warning labels shall be affixed to containers of regulated waste, refrigerators and freezers containing
blood or other potentially infectious material; and other containers used to store, transport or ship
blood or other potentially infectious materials.
These labels shall be fluorescent orange or orange-red or predominantly so, with lettering and symbols
in a contrasting color.
 Labels shall be affixed as close as feasible to the container by string, wire, adhesive, or other method
that prevents their loss or unintentional removal.
 The safety procedures that have been discussed in this section typically fall into a hierarchy of controls.
Following the hierarchy normally leads to the implementation of inherently safer
systems, ones where the risk of illness or injury has been substantially reduced. Below is one example of
this hierarchy to keep you and those you work with safe.
161

 Treating all human blood and
other PIMs as if they are
contaminated
 When handling any bodily fluids
or other materials that you are
unsure whether they are
contaminated with blood or other
infectious materials, always treat
and handle them as if they are
contaminated. This includes any
of the precautions noted in this
section as deemed appropriate.
163

Proper Disposal of Contaminated or
Potentially Contaminated Materials
 Worksites are to be maintained in a clean and sanitary condition. Schedules for
cleaning and method of decontamination are to be based on the location within the
facility, type of surface to be cleaned, type of soil present, and tasks or procedures
being performed in the area. All equipment and environmental and working
surfaces need to be cleaned and decontaminated after contact with blood or other
potentially infectious materials.
 Contaminated work surfaces are to be decontaminated with an appropriate
disinfectant after completion of procedures, immediately or as soon as feasible
when surfaces are overtly contaminated or after any spill of blood or other
potentially infectious materials, and at the end of the work shift if the surface may
have become contaminated since the last cleaning.
 Protective coverings, such as plastic wrap, aluminum foil, or imperviously-backed
absorbent paper used to cover equipment and environmental surfaces, are to be
removed and replaced as soon as possible when they become overtly contaminated
or at the end of the work shift if they may have become contaminated during the
shift.
164

 All bins, pails, cans, and similar receptacles intended for reuse which have a
reasonable likelihood for becoming contaminated with blood or other potentially
infectious materials shall be inspected and decontaminated on a regularly
scheduled basis and cleaned and decontaminated immediately or as soon as
feasible upon visible contamination.
 Broken glassware which may be contaminated is not to be picked up directly with
the hands. It is to be cleaned up using mechanical means, such as a brush and dust
pan, tongs, or forceps.
 Reusable sharps that are contaminated with blood or other potentially infectious
materials shall not be stored or processed in a manner that requires employees to
reach by hand into the containers where these sharps have been placed. See the
sharps section of this course for more information on handling sharps.
165

 Regulated Waste
Reusable containers shall not be opened, emptied, or cleaned manually or in any other
manner which would expose employees to the risk of injury.
 Regulated waste shall be placed in containers which are closable; constructed to contain all contents and
prevent leakage of fluids during handling, storage, transport or shipping; labeled or color-coded in
accordance with the bloodborne pathogens standard; and closed prior to removal to prevent spillage or
protrusion of contents during handling, storage, transport, or shipping.
 If outside contamination of the regulated waste container occurs, it shall be placed in a second container. The
second container is to be closable; constructed to contain all contents and prevent leakage of fluids during
handling, storage, transport or shipping; labeled or color-coded in accordance with the bloodborne pathogens
standard; and closed prior to removal to prevent spillage or protrusion of contents during handling, storage,
transport, or shipping.
 Disposal of all regulated waste shall be in accordance with applicable regulations of the United States, States
and Territories, and political subdivisions of States and Territories.
166

 Laundry
 Contaminated laundry is to be handled as little as possible with a minimum of agitation.
 Contaminated laundry is to be bagged or containerized at the location where it was used and is not to be
sorted or rinsed in the location of use. Contaminated laundry is to be placed and transported in bags or
containers labeled or color-coded in accordance with the Bloodborne Pathogens Standard. When a facility
utilizes Universal/Standard Precautions in the handling of all soiled laundry, alternative labeling or color-
coding is sufficient if it permits all employees to recognize the containers as requiring compliance with these
precautions.
 Whenever contaminated laundry is wet and presents a reasonable likelihood of soak-through of or leakage
from the bag or container, the laundry is to be placed and transported in bags or containers which prevent
soak-through and/or leakage of fluids to the exterior.
The employer is to ensure that employees who have contact with contaminated laundry wear protective gloves
and other appropriate personal protective equipment.
When a facility ships contaminated laundry off-site to a second facility which does not utilize Universal
Precautions in the handling of all laundry, the facility generating the contaminated laundry must place such
laundry in bags or containers which are labeled or color-coded in accordance with the Bloodborne Pathogens
Standard.
167

 Decontamination and Sterilization
All surfaces, tools, equipment and other objects that come in contact with blood or potentially
infectious materials must be decontaminated and sterilized as soon as possible. Equipment and
tools must be cleaned and decontaminated before servicing or being put back to use.
Decontamination means the use of physical or chemical products to remove, inactivate, or
destroy bloodborne pathogens on a surface or item to the point where they are no longer
capable of transmitting infectious particles and the surface or item is rendered safe for
handling, use, or disposal. Use cleaning products or solutions approved by your employer and
meet EPA (Environmental Protection Agency) requirements for this use.
Under 29 CFR 1910.1030, the Occupational Exposure to Bloodborne Pathogens standard, the
Occupational Safety and Health Administration (OSHA) requires that contaminated items and
surfaces be decontaminated with an appropriate disinfectant. EPA-registered tuberculocidal
disinfectants and solutions of 5.25 sodium hypochlorite (household bleach) diluted between
1:10 and 1:100 with water are considered appropriate for this purpose.
168

 Current listings of the EPA’s registered sterilizer, antimicrobial,
tuberculocide, products effective against certain blood borne/body fluid
pathogens, Mycobacteria tuberculosis (tubercle bacteria), human HIV-1 virus,
Hepatitis B, Hepatitis C viruses, as well as products classified as sterilizers can be
located at http://www.epa.gov/oppad001/chemregindex.htm. The use of EPA
registered products effective against human blood borne pathogens listed on this
web site are in compliance with OSHA’s (Occupational Safety and Health
Administration) Occupational Exposure to blood borne Pathogens (29 CFR 1910).
 Chemical germicides that are EPA-approved for use as hospital disinfectants and
that are tuberculocidal/virucidal when used at recommended dilutions and contact
times can be used to decontaminate spills of blood or other body fluids that contain
blood.
169

 If you are cleaning up a spill of blood, you can carefully cover the spill with paper
towels or rags, then gently pour the approved solution of bleach over the towels or
rags, and leave it for the amount of time recommended by the product
manufacturer. This will help ensure that any bloodborne pathogens are killed before
you actually begin cleaning or wiping the material up. By covering the spill with
paper towels or rags, you decrease the chances of causing a splash when you pour
the bleach on it.
If you are decontaminating equipment or other objects you should leave the
disinfectant in place for the amount of time recommended by the product
manufacturer before continuing the cleaning process.
Any materials you use to clean up a spill of blood or potentially infectious materials
such as mops, sponges, re-usable gloves, buckets, pails, etc. also need to be
decontaminated with approved cleaners.
170

OSHA's new bloodborne pathogens standard includes
provisions for medical follow-up for workers who have an exposure
incident. The most obvious exposure incident is a needlestick. But
any specific eye, mouth, other mucous membrane, non-intact skin, or
parenteral contact with blood or other potentially infectious materials is
considered an exposure incident and should be reported to the
employer.
Exposure incidents can lead to infection from hepatitis B
virus (HBV) or human immunodeficiency virus (HIV) which causes
AIDS. Although few cases of AIDS are directly traceable to workplace
exposure, every year about 8,700 health care workers contract
hepatitis B from occupational exposures. Approximately 200 will die
from this bloodborne infection. Some will become carriers, passing the
infection on to others.
WHY REPORT?
Reporting an exposure incident right away permits immediate
medical follow-up. Early action is crucial. Immediate intervention can
forestall the development of hepatitis B or enable the affected worker to
track potential HIV infection. Prompt reporting also can help the
worker avoid spreading bloodborne infection to others. Further, it
enables the employer to evaluate the circumstances surrounding the
exposure incident to try to find ways to prevent such a situation from
occurring again.
Reporting is also important because part of the follow-up
includes testing the blood of the source individual to determine HBV
and HIV infectivity if this is unknown and if permission for testing can
be obtained. The exposed employee must be informed of the results of
these tests.
Employers must tell the employee what to do if an exposure
incident occurs.
MEDICAL EVALUATION AND FOLLOW-UP
Employers must provide free medical evaluation and
treatment to employees who experience an exposure incident. They are
to refer exposed employees to a licensed health care provider who will
counsel the individual about what happened and how to prevent fiuther
spread of any potential infection. He or she will prescribe appropriate
treatment in line with current U.S. Public Health Service
recommendations. The licensed health care provider also will evaluate
any reported illness to determine if the symptoms may be related to
HIV or HBV development.
The first step is to test the blood of the exposed employee.
Any employee who wants to participate in the medical evaluation
program must agree to have blood drawn. However, the employee has
the option to give the blood sample but refuse permission for HIV
testing at that time. The employer must maintain the employee's blood
sample for 90 days in case the employee changes his or her mind about
testing--should symptoms develop that might relate to HIV or HBV
infection.
The health care provider will counsel the employee based on
the test results. If the source individual was HBV positive or in a high
risk category, the exposed employee may be given hepatitis B immune
globulin and vaccination, as necessary. If there is no information on
the source individual or the test is negative, and the employee has not
been vaccinated or does not have immunity based on his or her test, he
or she may receive the vaccine. Further, the health care provider will
discuss any other findings from the tests.
The standard requires that the employer make the hepatitis B
vaccine available, at no cost to the employee, to all employees who
have occupational exposure to blood and other potentially infectious
materials. This requirement is in addition to post exposure testing and
treatment responsibilities.
WRITTEN OPINION
In addition to counseling the employee, the health care
provider will provide a written report to the employer. This report
simply identifies whether hepatitis B vaccination was recommended
for the exposed employee and whether or not the employee received
vaccination. The health care provider also must note that the employee
has been informed of the results of the evaluation and told of any
medical conditions resulting from exposure to blood which require
further evaluation or treatment. Any added findings must be kept
confidential.
CONFIDENTIALITY
Medical records must remain confidential. They are not available to
the employer. The employee must give specific written consent for
anyone to see the records. Records must be maintained for the
duration of employment plus 30 years in accordance with OSHA's
standard on access to employee exposure and medical records.

What do I do if I am exposed to blood or
other a potentially infectious material?
Exposure means that a mucous membrane, broken skin (from cuts, scrapes, abrasions,
acne, etc.) or a skin puncture has come into contact with blood or a potentially
infectious material. If you have experienced an exposure, clean the area as
described below or per your employer’s policies, report the incident and get
medical care.
 First Aid
 If you or someone you work with is splashed or in other ways contacted with blood or other PIMs, the
first step is to thoroughly wash the exposed skin with soap and running water. If the contact is with a
mucous membrane, immediately flush the involved mucous membrane with water for at least 15 minutes.
 As soon as this is completed, report the incident to your supervisor or other appropriate staff at your
place of employment. Follow reporting procedures established by your employer.
 Contact your doctor or other appropriate medical professional as soon as possible for follow-up
treatment.
172

 Reporting Exposure Incidents
 Reporting exposure incidents encourages immediate medical attention and follow-up.
It can help the affected individual as well as assuring that if the person becomes
infected from the incident, they do not infect other persons. It also helps assure the
affected person receives necessary, ongoing medical care.
 Reporting incidents also helps the employer evaluate why the incident occurred and
work toward preventing future exposure incidents.
 Your employer should have in place procedures for reporting exposure incidents.
173

Summary
 This course has provided you with a basic understanding of
initial required topics for providing Medicaid Waiver services.
The course has covered:
 An Overview of Developmental Disability
 Best Practices for Serving Individuals with Developmental Disability
 Rights of Individuals with Developmental Disability
 Incidents Adversely Affecting Health and Safety (Rule 5123:2-17-02)
 Universal Precautions for Infection Control
 Overview of Basic Principles and Requirements of Providing Home and
Community-Based Waiver Services
175

 This competency-based training requires you to take and pass a multiple-
choice quiz —100% accuracy is required. You will be allowed multiple
attempts to take and pass the quiz. The quiz contains questions from all
resources provided in the course including the course narrative and all
required reading resources.
 If you are ready, take the quiz.
176

QUIZ
Eight Hour Required Provider Training for Medicaid Waiver Services (5123:2-2-01)
NAME: _____________________________________ Contact #: _________________________________
MAILING ADDRESS: _________________________________________________________________________
__________________________________________________________________________________________
Instructions: circle the correct answer. You need 80% to pass.
1. Which of the following are developmental disabilities?
a. Autism
b. Mental Retardation
c. Cerebral Palsy
d. Fetal Alcoholism Syndrome
e. None of the Above
f. All of the Above
2. Which of the following is the best definition for “developmental disabilities”?
a. Severe chronic disabilities that are cognitive only. The disabilities appear before 22 years and
are likely to be life-long.
b. Severe chronic disabilities that can be cognitive, physical or both. The disabilities appear before
22 years and are likely to be life-long.
c. Severe chronic disabilities that can be cognitive, physical or both. The disabilities appear at
birth and are likely to be life-long.
d. None of the above
3. “Mental Retardation” and “Developmental Disabilities” are the same thing?
a. True
b. False
4. Fetal Alcoholism Syndrome is preventable?
a. True
b. False
5. With the proper treatment, cerebral palsy can be cured?
a. True
b. False
6. Cognitive disabilities relate to disabilities that relate to:
a. Thought processes and the ability to comprehend
b. Physical impairments
c. Birth defects
d. All of the above
e. None of the above
7. Down’s Syndrome is
a. Caused by a mother that consumed alcohol during pregnancy
b. Caused by a chromosomal abnormality
c. Caused by the pregnancy in an older parent
d. None of the above
e. All of the above
8. “Intellectual Disability” and “Mental Retardation” are the same thing?
a. True
b. False

9. All people with developmentally disabilities should be treated with dignity and respect?
a. True
b. False
10. Which of the following is considered disrespectful inappropriate language?
a. Johnny is confined to a wheelchair
b. Mary is retarded
c. Sue is a tube feeder
d. Josie can’t do anything right
e. All of the above
f. None of the above
11. The main concept of person-centered planning is to develop a plan to meet personal needs, desires,
dreams and choices of an individual, then find or create the services, supports and budget to make that
plan happen.
a. True
b. False
12. Self-determination is the belief that people can and should be in charge of their own lives to whatever
degree that person is capable.
a. True
b. False
13. The four main principles of self-determination are:
a. Work, home, independence, authority
b. Dreams, desires, needs, supports
c. Control, financial stability, supports, home
d. Freedom, authority, support, responsibility
e. All of the above
14. Supported employment should achieve which of the following:
a. Opportunity to earn equitable wages and other employment-related benefits
b. Development of new skills
c. Increased community participation
d. Enhanced self-esteem
e. All of the above
15. Supported Living is a way to assist individuals with developmental disabilities to live as independently
as possible in their own homes in their own communities, with needed supports.
a. True
b. False
16. An ICFMR facility typically serves only people with severe physical disabilities.
a. True
b. False
17. Why is the concept of ‘single point of contact’ an important requirement?
a. It assures that one coordinated plan is developed for each person
b. It assures the plan is carried out in accordance with all applicable rules and best practices.
c. It assures that quality assurance reviews are carried out
d. It assures the results of quality assurance reviews are incorporated into the individual’s plans
and services
e. All of the above

18. County boards are required to provide service and support administration to any individual, regardless
of age, who is applying for or enrolled in an HCBS waiver.
a. True
b. False
19. Who is responsible for developing and revising a person’s individual service plan?
a. Team leader
b. Individual
c. Service and Support Coordinator
d. Provider
e. Family member
20. Which of the following statement(s) is/are true?
a. The ISP is a legal document that provides a roadmap of the person’s life plan
b. Individuals are relying on the ISP to maintain their health and safety
c. Providers are responsible for delivering services as outlined in the ISP
d. Providers are held accountable for the proper delivery of services as outlined in the plan
e. All of the above
21. Section 5123.62 of the ORC Rights of Persons with Mental Retardation or Developmental Disabilities is
the statute that addresses the rights of a person with a developmental disability.
a. True
b. False
22. The law passed by the United Nations in 2007 says people with disabilities have the same rights as
everyone else. Which of the following are guaranteed rights:
a. Equality – the right to be treated as equal citizens
b. Safety – the right to be free from violence and abuse
c. Home and family – the right to be part of a family and to start one
d. Privacy – no matter where the individual lives
e. All of the above
a. Independent living – the right to live in the community
b. Work – the right to work and earn a decent living
c. Education – the right to an equal education along with everyone else
d. Health – the right to the best possible healthcare
e. All of the above
f. None of the Above
a. Access – the right to get to and use public spaces and public services
b. Political life – the right to vote and have a day in laws and policies
c. Attitudes of others – the right to be treated as any other person
d. Sports and leisure
e. All of the above

25. Rights are addressed in both state and federal law.
a. True
b. False
26. Individuals with disabilities must have a guardian unless the courts deem the person capable of being
their own guardian:
a. True
b. False
27. Every provider of services to persons with mental retardation or a developmental disability must
establish policies and programs to ensure that all staff members are familiar with the rights
enumerated in section 5123.62 of the Revised Code (Rights of Persons with MRDD) and observe those
rights in their contacts with persons receiving services.
a. True
b. False
28. How long must an individual with disabilities be missing to be considered an MUI?
a. 4 hours
b. 8 hours
c. 12 hours
d. 24 hours
29. County board staff and each independent provider must receive training on the requirements of the
MUI rule at the time of initial employment and annually thereafter.
a. True
b. False
30. All incidents of possible abuse must be reported to local law enforcement and to the county board or
to the public children’s service agency, when applicable, no matter where the incident occurred.
a. True
b. False
31. Major unusual incident means the alleged, suspected, or actual occurrence of an incident when there
is reason to believe the health or safety of an individual may be adversely affected or an individual may
be placed at a reasonable risk of harm, if the individual is receiving services through the DD service
delivery system or will be receiving such services as a result of the incident.
a. True
b. False
32. What is the purpose of a Medicaid waiver?
a. To avoid following the rules of Medicaid
b. To assure health care services for adults with disabilities
c. To keep people living in their own homes rather than moving to more expensive options
d. To be able to exceed normal costs of doing business
33. Hand washing is not an effective way to prevent illness.
a. True
b. False
34. How is it determined what services an individual needs and will receive under the waiver?
a. The service and support administrator decides
b. Service needs are determined through the individual planning process
c. Medicaid chooses the appropriate services for the individual
d. Appropriate services will be determined through administration of the OEDI

35. Appropriate services will be determined through administration of the OEDI.
a. Assess what services and supports
b. Determine funding ranges and payment amounts that will be available to an individual for the
IO waiver
c. Create a psychological profile to compare applicants to one another to rank need
d. All of the above
36. The AAI (Acuity Assessment Instrument) is used:
a. As the basis for the ISP and goal setting
b. To determine how perceptive a person is in comparison to others in the group
c. To determine an individual’s desired outcomes
d. To determine groupings and staff intensity ratios
37. Each individual who is eligible for and who wants to receive adult day services is assigned a budget
limitation. This is the funding amount that is available to a person to purchase adult day Medicaid
waiver services.
a. True
b. False
38. What is a bloodborne pathogen?
a. An organism in human blood that can cause disease.
b. A virus that is born in the blood but never leaves.
c. The path that blood takes in the body.
d. All of the above
39. How are bloodborne pathogens spread?
a. Contact with contaminated blood to an open wound in the skin.
b. Skin punctures by a contaminated object.
c. Getting splashed in the eye with contaminated blood.
d. Sexual contact
e. All of the above
40. Which of the following can be prevented through immunizations?
a. Hepatitis A
b. Hepatitis B
c. Hepatitis C
d. HIV
41. If you are wearing gloves when touching blood, you do not need to wash your hands when you remove
your gloves.
a. True
b. False
42. Proper hand washing is not important in regard to bloodborne pathogens.
a. True
b. False
43. You should treat all human blood as if it is contaminated.
a. True
b. False

44. What is the most commonly used PPE in the healthcare setting?
a. Gowns
b. Face shields
c. Gloves
d. Hairnets
45. Hand washing is not an effective way to prevent illness.
a. True
b. False
Signature: _______________________________________________________________
Please mail your signed test to:
Human Resources, House of New Hope
8135 Mt. Vernon Rd., St. Louisville, OH 43071
Or
Fax: 888-810-6162 toll free

DD Medicaid Pre-Service

More Related Content

What's hot (20)

Similar to DD Medicaid Pre-Service (20)

More from House of New Hope (20)

Recently uploaded (20)

DD Medicaid Pre-Service