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CHF Transitioning Guide

S
Saba Jearld

1. Preparing HIV+ youth for self-advocacy and self-care is a gradual process that should begin in early adolescence to lay the groundwork for transition to adult care. 2. Key topics to discuss include disclosure, medication adherence, understanding one's diagnosis and health history, identifying adult providers, and transferring care. 3. Encouraging youth to take on more responsibility for their care over time- such as making appointments, understanding medications, and asking providers questions- helps build self-advocacy skills for managing care as an adult.

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Your HIV+ Youth to TRANSITIONING This publication was supported by grant number H89HA0015M from the United States Health Resources and Services Administration. This grant is funded through TitleI of the Ryan White CARE Act Amendments of 2000, through the New York City Department of Health and Mental Hygiene to the Medical and Health Research Association of New York City, Inc. Its contents are solely the responsibility of the Subcontractor and do not necessarily represent the official views of the funders. HEALTHY ADULTHOOD: Susan Jacob - Children’s Hope Foundation APRIL 2 0 0 7 Saba Jearld MPH - Partnership for Family Health AA GGuuiiddee ffoorr Health Care Providers
1 Transitioning Your HIV+ Youth to Healthy Adulthood: A Guide for Health Care Providers Susan Jacob Children’s Hope Foundation Saba Jearld, MPH Partnership for Family Health April 2007 This publication was supported by grant number H89HA0015M from the United States Health Resources and Services Administration. This grant is funded through Title I of the Ryan White CARE Act Amendments of 2000, through the New York City Department of Health and Mental Hygiene to the Medical and Health Research Association of New York City, Inc. Its contents are solely the responsibility of the Subcontractor and do not necessarily represent the official views of the funders.
22 The Transition Consortium The Transition Consortium was founded by the Children’s Hope Foundation (CHF) and the Partnership for Family Health: Northern Manhattan HIV Consortium (PFFH) following the success of our cosponsored symposium, “Changing Times, Changing Lives: Transitioning HIV+ Adolescents to Adult Services.” Uniting pediatric, adolescent, and adult providers from the New York City area, the Transition Consortium established working groups intended to address issues central to HIV+ adolescents’ successful transition to adult health care services. This booklet and the accompanying poster, “Positive Transition to Adult Health Care,” represent the contributions of the provider working groups, as well as the authors’ consultations with additional health care professionals. Authors: Susan Jacob, Children’s Hope Foundation Saba Jearld, MPH, Partnership for Family Health Transition Consortium Members: Bellevue Hospital Center Albert Einstein College of Medicine Columbia School of Nursing Françios-Xavier Bagnoud Center Harlem Hospital HEAT Program/Kings County Hospital Center HIV Law Project Jersey Shore University Medical Center Legal Aid Society of New York The Mount Sinai Medical Center New York Presbyterian Hospital Brooklyn Pediatric AIDS Network/SUNY Downstate
3 Acknowledgments Special thanks to Bellevue Hospital Center for their invaluable help with this booklet and the Enhancement Project. These projects would not have succeeded without the support of the hospital's Virology Services department. We are grateful to the following individuals at Children’s Hope Foundation and Partnership for Family Health for devoting their time and energy to this project: Elizabeth Bliss, MST Scott Cottenoff, JD, MPH Elizabeth Lee, MPA Emily Nishi, MPA Nancy VanDevanter, DrPH We would like to thank Bruce Beckwith, LCSW and Erika L. Rexhouse, LCSW for contributing content to this booklet. We appreciate the guidance and content provided by the Institute for Community Inclusion's booklet for health care providers: Transition Planning for Adolescents with Special Health Care Needs and Disabilities: A Guide for Health Care Providers. http://www.communityinclusion.org We would like to give special thanks to the University of South Florida’s Pediatric/Adolescent HIV Program— a model transition program for HIV+ adolescents—for providing assessment tools and distributable resource materials. We would also like to thank: Ariel Chernin Jesse Wright Cathy Bowman, HIV Project Director, South Brooklyn Legal Services Tiffany Chenneville, PhD, Director of Behavioral and Psychosocial Services, University of South Florida Pediatric Infectious Disease Program Patricia Gilliam, MEd, MSN, ARNP, BC, University of South Florida, Department of Psychiatry and Behavioral Medicine Finally, we are grateful to those who contributed time to review this booklet.
4 Table of Contents How To Use This Booklet Chapter 1: Introduction I. What is Transition? II. Barriers to Successful Healthcare Transition III. Benefits of Transition IV. Preparing for “Letting Go” Chapter 2: Transition: Self-Advocacy and Self-Care I. Background Information II. Disclosure III. Adherence IV. Provider Tool: Self-Advocacy and Self-Care Skills V. Taking Charge of Your Health Care: A Handout for Young Adults Chapter 3: Transition: Sexuality I. Background Information II. Provider Tool: Sexual Health and Transmission Quiz Chapter 4: Transition: Employment I. Background Information II. Steps for Transitioning Your Youth to the Workforce III. Workshop Topics Chapter 5: Transition: Social Network I. Background Information II. Life Skills Workshop Topics Chapter 6: Transition: Permanency Planning I. Background Information II. Legal Issues III. Tips for Providers: Helping with Permanency Planning IV. Helping Adolescents Deal with Grief V. Activity for Parents Chapter 7: Transition: Entitlements I. Background Information II. Entitlements: i. Medicaid ii. Family Health Plus iii. Supplemental Security Income (SSI) iv. AIDS Drug Assistance Program (ADAP) v. HIV/AIDS Services Administration (HASA) Additional Resources: Transition Tools Adherence Tool Self-Advocacy and Self-Care Employment Permanency Planning Entitlements 6 8 8 9 9 11 12 12 13 13 15 17 18 18 19 20 20 21 22 24 24 24 26 26 26 28 28 30 32 32 33 33 34 35 35 36 42 42 47 51 54 58 59
Transitioning Your HIV+ Youth to Healthy Adulthood: A Guide for Health Care Providers 5
6 How To Use This Booklet Information published in this booklet is considered to be true and correct at the date of publication. Changes in circumstances after the time of publication may impact on the accuracy of the information. We have no control at all over the information on linked sites. This booklet is primarily intended for providers working with perinatally- infected HIV+ adolescents and young adults; however, much of the information will be relevant to behaviorally-infected youth, as well. We have identified six areas relevant to transitioning HIV+ adolescents and young adults to adult care settings: 1.Self-advocacy and self-care 2.Sexuality
3.Employment 4.Social network 5.Permanency planning 6.Entitlements For each topic, we discuss key issues and provide tools to facilitate the transition process. In addition, we have included supplementary resources at the end of the booklet that may assist providers, clients, and families. Finally, please review the poster, “Positive Transition to Adult Health Care,” which is an illustrative example of the following content. 7
8 Chapter 1: Introduction At the beginning of the HIV/AIDS epidemic, most HIV+ children were not expected to survive; however, due to the development of antiretroviral therapies many HIV+ children have grown into active adolescents and young adults. Perinatally-infected adolescents and young adults often receive care from the same provider or in the same setting for years. Adolescents and their caregivers come to know, trust, and rely on their health care providers. In addition, young people, their caregivers, and providers frequently develop a connection that transcends the typical health care relationship and represents more of a familial bond. Despite the strong ties between HIV+ adolescents and their health care providers, funding requirements and hospital regulations prohibit many pediatric health professionals from retaining older clients. Moreover, it is a natural progression within the development continuum for HIV+ adolescents to take responsibility for their disease management and general wellbeing. Unfortunately, many barriers often stand in the way of transitioning HIV+ adolescents and young adults to adult care. I. What is Transition? Transition is a multifaceted, active process that attends to the medical, psychological, and educational or vocational needs of adolescents as they move from the child-focused to the adult-focused health-care system. (Reiss, J, Gibson, R. Healthy care transition: destinations unknown. Pediatrics. 2002; 110:1307-1314)
9 II. Barriers to Successful Health Care Transition Barriers to Transition – Providers - Difficulty identifying adult primary care providers - Adolescent resistance - Family resistance - Lack of institutional support - Time for planning - Resources - Personnel Barriers to Transition – Youth/Family - Little family awareness and knowledge of health care transition - Lack of preparation for health care transition - Adult-oriented medical providers’ lack of knowledge of childhood-onset chronic conditions - Transition often prompted by age or behavior rather than readiness - Differences in child and adult medicine Despite these barriers, transition into an adult health care setting is inevitable, and the pediatric provider plays a crucial role in preparing young adults and their caregivers for this important milestone. The transition process should begin in pre-adolescence and requires providers, caregivers, and clients to work together to develop a transition timeline, establish new boundaries, and implement the eventual transition to adult services. Empowering youth and fostering their independence are essential to the transition process. These are the best ways to ensure that pediatric patients successfully transition to adult care and possess the tools they need to move toward healthy adulthood. III. Benefits of Transition Psychosocial Benefits for Youth - Promotes social and emotional development - Promotes positive self-concept and sense of competence - Supports positive self-image and self-reliance - Promotes independent living - Supports long-term planning and life goals - Broadens system of interpersonal and social supports Benefits to Providers & Pediatric Facilities - Maintains practice within area of training and interest - Preserves organization’s mission and focus - Allows room for new patients
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11 Specific steps for providers: Encourage youth to cosign and become involved in the health care process Define transition expectations in early teen years Provide a transition plan of care Focus on health promotion, prevention of secondary disabilities, and prevention of self-destructive behavior Start to address adult insurance coverage Look for sources of adult health care and provide strategies for selecting an adult health care provider: Encourage family to visit and ‘interview’ physician and staff Transition primary care before specialty care Work with adult health care providers Let your teen advocate for him/herself IV. Preparing for “Letting Go” Transition is more than a process. It takes all of us to make the journey as smooth as possible… Think and talk with youth and family in five-year-into-the-future segments Teach/re-teach about health conditions at appropriate cognitive levels Involve youth (and family) in decision-making (‘assent to consent’) Ask about and support ‘grown-up’ plans Ask youth how to help make their dreams a reality Have faith in your teen Support your teen Allow your teen to advocate for him/herself Be open and honest about your concerns—it's important to express how you feel without being critical or judgmental Allow your teen to be involved in the different processes, such as obtaining entitlements Only offer your advice if you see there's a problem Do not assume trouble is around the corner, and if it is your teen will not be able see it Let your teen advocate for him/herself
12 Chapter 2: Transition: Self-Advocacy and Self-Care 8 -12 years old 13 – 16 years old 17 – 19 years old 20 -24 years old Self-Advocacy and Self-Care Timeline I. Background Information As adolescents approach young adulthood, transition to an adult health care setting is inevitable. Encouraging a young person to transition supports long-term goals and healthy development. However, preparing a young person for self-advocacy and self-care must begin well before late adolescence in order to lay groundwork for what is often a complicated and uncertain step. HIV+ Adolescents face tremendous challenges as they mature to adulthood, including: Balancing complicated care: - Multiple medications and appointments - Variety and range of providers Familiar care network: - Dependence on caregivers and providers to manage disease - Reluctance to leave a supportive care network - Awareness of the benefits of the pediatric setting and the potential challenges associated with moving to an - Unfamiliar adult setting Psychosocial development issues: - Coping with typical worries of adolescence, including relationships, employment, and education - Developing and exploring own identity separate from, and in relation to, family and friends - Struggling with disclosure of disease status to peers - Asserting a sense of independence from authority figures through, for example, non-adherence to treatment regimen The following is a suggested timeline for discussing topics related to self-advocacy and self-care. - Encourage caregivers to disclose to child - Solicit direct conversation with adolescent - Increase private meetings with adolescent - Begin to explain medications - Deal with early adherence issues - Link to support groups and/or counseling - Assist adolescent with a calendar for appointments and prescriptions - Ensure adolescent understands diagnosis, needed medications, health precautions - Connect to teen-based adherence program - Enforce responsibility in making and keeping appointments - Provide copies of medical records and forms of identification - Review medical history - Promote questions about care regimen and possibilities for future changes in regimen - Provide youth with substantial medical and entitlements history - Help identify appropriate adult providers through visits to new clinics - Transfer medical records to new provider, highlight key issues
13 - List ‘testing the water’ questions your teen can ask friends in order to gauge their opinion of HIV/AIDS and people living with HIV - Ask your teen to create a “pros” and “cons” list for telling a friend about their HIV status - Create guidelines and criteria for identifying safe and unsafe people to disclose to - Role play: ask your teen to imagine how they would tell a friend about their HIV status - Discuss the various reactions—positive or negative—friends may have and ways to cope with those reactions - Create disclosure scripts for different people, e.g., providers, peers, family members, significant others, etc. II. Disclosure Disclosing a child’s HIV status is a crucial turning point in managing the disease. It is often hard to keep a child adherent to antiretroviral treatment when they are unaware of the reason they are taking medicine. Supporting a family with disclosing to an uncooperative child early on in their development may bolster adherence. For adolescents, disclosure of their HIV status to peers is often a daunting task. Adolescents do not want to be rejected by their peers; however, relieving the burden of secrecy often increases their sense of social support. In addition, adolescents must become competent and comfortable with talking about their disease and associated issues with future adult providers. III. Adherence As adolescents mature, they must assume greater responsibility for administering their own medications; however, their desire to belong and fit in may conflict with the need to take numerous medicines at various times throughout the day. As adolescents assert their need for independence and seek to define their identity, this can often wreak havoc on adherence to antiretroviral therapies. It is crucial to address adherence issues in adolescence, as poor adherence as a teen can lead to poor adherence as an adult. (See the Additional Resources section at the end of the booklet for the Adherence Tool.) Here are some strategies to facilitate adolescents’ disclosure to peers and providers:
14 Medication adherence is affected by a variety of factors. Clients may maintain adherence to HIV medication for a stretch of time and then become non- adherent because of life stresses, disinterest in medication, etc. Movement along a continuum of medication adherence is common. Staging your client and his/her readiness to regularly take HIV medication allows you to assess their location on the continuum and to respond with support. To briefly relate the Stages of Change Theory (Prochaska and DiClemente, 1992), a client’s interest in regularly taking HIV medications may range from resistance to commitment. This fluctuating motivation is often referred to as stages of change. The 5 stages are: Medication adherence is affected by a variety of factors Precontemplation Contemplation Preparation Action Maintenance 1 2 3 4 5
15 Use the following questions to identify your client’s current stage: Have you been taking medications regularly for more than 6 months? Yes (Maintenance Stage) No (go to next question) Are you in the process of trying to take medication regularly? Yes (Action) No (go to next question) In the next 30 days, are you going to consider taking medication regularly? Yes (Preparation Stage) No (go to next question) In the next 6 months, are you going to consider taking medication regularly? Yes (Contemplation Stage) No (Precontemplation Stage) There are a variety of activities you can use to help move your client toward the final stage, ‘maintenance.’ The Adherence Tool, located in the Additional Resources section of the booklet, will help promote regular adherence to medication. Suggestions for improving adherence among HIV+ adolescents: IV. Provider Tool: Self-Advocacy and Self-Care Skills The following tool can be used to identify when you should discuss certain self- advocacy and self-care skills with adolescents and their families. - Investigate the option of fewer pills or combination regimens - Arrange early morning and late evening dosing time to avoid conflict with a school or work schedule - Arrange confidential pharmacy delivery of antiretroviral medicines or clinic pick-up - Provide adherence tools such as pillboxes and adherence calendars, and provide incentives for 95% or above adherence
16 Name: DOB: MR# < 11 years of age 11 to 14 years of age 15 to 24 years of age Date Initiated: Date Disclosure: Discussed Achieved Discussed Achieved Discussed Achieved Knowledge of Health Condition and Management Child interacts directly with health care team, asks questions. Assess child's knowledge and perception of diagnosis. Build on their understanding. Assess adolescent/family's readiness and assist with disclosure. Able to answer "What is HIV?" Able to answer "What are T cells?" Able to answer "What is a viral load?" Verbalizes names and dosages of medications. Verbalizes rules for taking medications (with food, etc). Able to fill prescriptions and obtain refills. Verbalizes known possible side effects of medications. Takes medications independently. Able to independently make appointments. Able to independently give history. Verbalizes when and how to call the doctor. Verbalizes when and how to access urgent/emergent care. Able to set up transportation for appointments. Keeps calendar of appointments. Able to identify members of the health care team, roles and how to contact. Adolescent Engages in Preventative Health Behaviors Visiting dentist every 6 months. Current with immunizations and health screenings. Engages in preventative behaviors (exercise, nutrition, TSE, BSE, etc). Abstains from using alcohol, drugs, cigarettes and/or aware of risk reduction behaviors. Adolescent Demonstrates Knowledge of Responsible Sexual Activity Identifies high risk situations for exploitation and victimization. Knowledge of contraception options, STD, STD prevention Understands implications of diagnosis on pregnancy. Adolescents Demonstrates Knowledge of Health Insurance Concerns and Issues Identifies when eligibility terminates for health insurance. Verbalizes type of insurance, limits of coverage, how to contact. Knowledge of AIDS Insurance Continuation Program. Adolescent Demonstrates Knowledge of Community Resources Case Management - THAP, etc Support Groups ADAP: AIDS Drug Assistance Program White areas are suggested ages to address individual skills but plans would be individualized based on development, social situation & time of entrance into program. Please date and initial discussion/achievement boxes.
17 V. Taking Charge of Your Health Care: A Handout for Young Adults The following handout can be used to prompt older adolescents to think about the information they will need to know in an adult care setting.Recently transitioned young adults can use the handout as a reminder of the issues they need to address with their current provider. Transition Health Care Taking Charge of Your Health Care: A handout for adolescents and young adults With special health care needs Be your own health care advocate Learn about your condition. Know the warning signs that mean you need emergency help. Know who to call in case of an emergency. Carry that information with you. Learn how to make your own appointments. Write down any questions you have before you go to the doctor’s office. Meet privately with your health care providers. Speak up and ask your health care provider questions. If you don’t understand an answer, ask again. Talk to your doctor about difficult topics such as relationships, drugs, and birth control. Ask for copies of medical tests or reports. Carry your insurance card and other health care information that you think is important. Take charge of your health care information Be sure to understand the medications that you are taking. What are their names and when do you take them? Know how to call your pharmacy and how to fill your prescriptions. Make sure you know your insurance and how to get a referral. Keep a list of addresses and telephone numbers of all your health care providers and community resources. Keep a notebook of medications, medical history and results of medical tests. Ask health care provider for a short written summary of your health condition. Know how to order and take care of any special supplies you use. Plan for transfer to an adult health care provider Talk to your doctor and know how and when you should start seeing an adult doctor. Discuss with provider resources that might be helpful to you. Meet and talk with the new health care provider before you switch. Adapted with permission from materials produced by the Institute for Community Inclusion at Children’s Hospital, Boston, as part of the Massachusetts Initiative for Youth with Disabilities, a project of the Massachusetts Department of Public Health. Supported in part by project #HO1MC00006 from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services: www.communityinclusion.org/transition/providerguide.html.
18 Chapter 3: Transition: Sexuality I. Background Information Adolescence is a time of exploration and growth, and this growth also includes sexual maturation and increased sexual desire. General sexual health and sexuality information is appropriate for HIV+ adolescents and young adults; however, there are specific aspects of sexual health information that HIV+ adolescents and young adults must be aware of to protect themselves and their potential sexual partners. Some issues facing HIV+ adolescents and young adults regarding sexuality include: - Delayed growth and sexual maturation due to their HIV+ status - Discomfort with their bodies due to medication side-effects (e.g., lipodystrophy) - Inability to find a person with whom they are comfortable talking about sex and sexuality - Discomfort disclosing their HIV status to peers and/or romantic partners. - Pressure from peers and/or romantic partners to engage in sexual behavior Some issues facing providers and families grappling with their HIV+ adolescent’s sexuality: Providers - Discomfort with discussing sex and sexuality with their long-time pediatric patient - Inability to view their maturing patient as a sexual being Family - Unwillingness to discuss sex and sexuality - Morals and values that do not condone sexual behavior before marriage - Concerns that talking about sex and sexuality may appear to promote sex
19 8 – 12 years old 13 – 16 years old 17 – 19 years old 20 – 24 years old - Facilitate questions - Assess ‘sexual knowledge’ base - Link to adolescent friendly gynecologist - Begin to review sexuality issues and safe sex practices - Continue sexuality conversation - Encourage questions about HIV+ sexuality and pregnancy - Refer for regular sexual health checkups - Disclosure of HIV status to potential sexual partner(s) Sexuality Timeline II. Provider Tool: Sexual Health and Transmission Quiz T F Don’t know HIV can be spread through oral, anal, or vaginal sex HIV can not be spread by sharing needles for drugs, tattoos, or body piercing A person with HIV should not donate blood HIV can be spread by kissing, hugging, sharing drinking glasses, toilet seats, or eat- ing utensils HIV can be spread through coughing or sneezing A mother can give HIV to her baby during pregnancy, childbirth, or breastfeeding Birth control pills and Depo shots prevent the spread of HIV and other STDs Latex condoms are 100% effective in preventing the spread of HIV and other STDs A woman with HIV can not give it to her male partner It is important to use only a water-based lubricant with latex condoms A person with HIV can go to jail if he/she has unprotected sex with someone who does not know his/her diagnosis A woman with HIV is more at risk for other STDs (gonorrhea, syphilis, herpes, chlamydia) The best way to prevent the spread of HIV and other STDs is to not have sex Timeline The following is a suggested timeline for discussing topics related to sexuality.
20 Chapter 4: Transition: Employment Ways to help young adults: - Provide encouragement, guidance, support and information resources concerning employment - Long term planning needs to begin early to ensure that students take the courses and acquire the skills they need to reach their goals - The encouragement providers and families give is most effective when it begins at an early age Benefits of employment: - Employment while the student is still in school can provide a chance to learn first-hand about the work world and develop important job-related skills - Early job experiences provide opportunities to develop new relationships with peers and adults, and the ability to form work relationships is critical for adult life *Please see the Additional Resources section at the end of the booklet for information regarding Employment Certificates and a list of employment agencies serving young adults. I. Background Information Many young adults are employed. Some work in full-time jobs, some in temporary jobs and some in seasonal jobs. The option of employment is a viable one and needs to be talked about as such. Early work experiences lay the foundation for the development of life-long skills. Transitional planning should identify goals and objectives based on the youth’s choices, strengths, likes, and personal vision statement.
21 3. Discuss how to look for a job: - Ask Around - Ask friends, family, youth workers, business owners, etc. if they know of any job openings - A lot of jobs are never advertised and are filled by word-of-mouth - Newspaper ads - Newspapers are always available at public libraries - Volunteer work - Volunteering is an excellent way to acquire the skills, experience and contacts that facilitate finding a job - Provide teens with job resources (see Resources section at end of booklet) - College and university career centers - Internet search 4. Encourage your teen to create a resume. They can be referred to agencies that assist with resume writing (See Additional Resources section at end of booklet). 5. Help teens fill out applications if they need assistance. Working alone Working with people Working with a team Working inside Working outside Working supervision Having freedom Moving around Sitting/standing still Using tools Using numbers Handling money Helping people Solving problems Being accurate II. Steps for Transitioning Your Youth to the Workforce How to help your youth transition and prepare for work: 1. Explain to your teen why it is important to have a job. 2. Discuss different possible work environments and ask your adolescent to fill out the checklist to indicate their preferences.
22 III. Workshop topics If you have a teen support group, you may consider having series of employment workshops. A few workshop ideas: Money Management: - What money means - Deciding what is important to spend money on - Developing a savings plan - Taxes - Payroll taxes - Income taxes - How to open a checking account and maintain it - Learning about credit - Pros and cons of cashing a paycheck - Cash vs. credit cards - Paying bills on time - Different ways of paying bills - Experiment in budgeting - Handling telephone offers Communication: - Communication charades: focusing on tone of voice and facial expressions to relay messages to one another - Communication for an interview - Communication on the job - Learning to negotiate - Managing conflict through healthy communication Work and Study Skills: - Learning about careers through newspapers and job fairs - Working on a career plan to identify goals - Using the library - Learning styles College and GED Programs: - What to look for in a college - How to apply for college - How to write a college essay - How to pay for college - How to obtain a high school transcript - How to find a local GED Program - Requirements for enrolling in a GED Program Employment: - Why work? - Looking for a job - Job applications - Keeping an employment file - Writing a resume - Mock interviews - Questions about the job - What to do after the interview - Understanding your paycheck - Employee benefits - Handling problems on the job - Leaving the job
23 Transitioning Transitioning Transitioning Transitioning Transitioning Transitioning Transitioning Transitioning Transitioning
24 II. Life Skills Workshop Topics If you have a teen support group, you may consider having series of life skills workshop. A few workshop ideas: Daily Living Skills: - Grocery Shopping - Making a list - Meal planning - Comparison shopping of food and supplies - Hands-on practice preparing meals - Cooking with a recipe - Table manners when out for dinner - Tipping appropriately when out for dinner Home Cleaning: - Why we need to clean - Cleaning supplies - Minimizing clutter - How to do laundry - How to find a local Laundromat Chapter 5: Transition: Social Network I. Background Information It is important for all adolescents to feel connected to friends, family, and their community. As a provider, you can encourage your client to participate in activities and programs that promote the development and maintenance of strong social ties. The following is a suggested timeline for discussing topics related to social networks. Social Network Timeline 8 – 12 years old 13 – 16 years old 17 – 19 years old 20 – 24 years old - Connect to social events, summer camps, and support groups - Pair youth with older mentor - Promote after-school activities - Ensure support network - Sustain health relationships - Support mentorship of a younger HIV+ adolescent
25 Home Safety and Repairs: - Maintaining smoke detectors and knowing how to get out of the building in an emergency - Obtaining renter’s insurance Transportation: - How to use the trains and buses - Learning to estimate how long it will take to get from one place to the next - How to get a driver’s license - Cost of car ownership with insurance Community Resources: - Keeping track of important documents Social Development: - Identifying adolescent’s strengths and their goals for the coming months and years - Create collages of picture and words that represent them - Dealing with discrimination Relationships: - Eco-Maps representing the adolescent’s relationships - Characteristics of healthy relationships - Maintaining a personal support system - Contributing to the community - Getting involved in hobbies and sports during leisure time Self Care: - Proper hygiene Health: - Exercise - Nutrition Housing: - How to find housing - What you need in a living arrangement. (being close to a subway, one bedroom, pets allowed, etc.) - Pros and cons of living with a roommates - Housing expenses - Having a back up plan should housing fall through - Penalties of late rental payment - Completing a lease application - Planning for the move and estimating initial costs of moving in
26 Chapter 6: Transition: Permanency Planning II. Legal Issues This section covers: - Legal options for parents - How are children involved in the process? - Difference between health care proxy and advance directive - What clients should discuss before meeting with an attorney Note: It is recommended that clients contact legal agencies and/or a lawyer to assist them with the preparation of legal documents such as wills, health care proxies, etc. (See Additional Resources section at end of booklet.) Legal options for parents: 1. Standby Guardianship: Parents can choose someone who "stands by" until needed to care for the children. There are two ways to name a standby guardian: Court-appointed: A parent goes to court and names a person selected to be the standby guardian. Written designation: A parent can name a standby guardian in writing and not go to court. 2. Legal Guardianship: In a guardianship, there is a change of parental responsibilities once the proposed guardian is approved by the court. Guardians can apply for public assistance for the child, regardless of whether or not they themselves qualify for public assistance. 3. Will: The parent designates in writing who should care for his or her children.The chosen person has no legal authority based on the will alone and must go to court following the parent’s death in order to become a child’s legal guardian. Wishes about how belongings will be distributed and about burial and memorial services can also be stated in a will. I. Background Information Permanency planning involves parents developing a viable custody plan for their children in case they are not able to care for them. The plan takes into consideration the needs of the children, the appropriateness of the caregiver, legal considerations, and parents' wishes. Parents may want you to assist them with talking to their children about permanency planning. One of the ways to help youth is to make them part of the process and to ensure that they have tangible items with which to remember their parents. In this section, we address legal issues related to permanency planning, tips for providers, and helping adolescents deal with grief.
27 4. Adoption: A parent permanently transfers parental rights and responsibilities for the children to the adoptive parent(s). The adoptive parent(s) have full parental rights and responsibilities for the children. 5. Power of Attorney: A parent can give authority to another person to act on his or her behalf should the parent become unable to do so. How are children involved in the planning process? 1. When the parent or guardian goes to court to have the guardian appointed, the child may be appointed an attorney to represent his/her best interests. This attorney is called a “law guardian.” 2. The law guardian should meet with the child and, if the child is old enough, should ask the child if he/she agrees with the parent’s choice of guardian. 3. Some law guardians may decide that the parent’s HIV status should be disclosed to the child, even if the parent or guardian does not want it to be. If this happens, the parent/guardian should consult a lawyer. 4. Children 14 years and older have the right to say with whom they want to live; therefore, they must express their preference in writing through their law guardian and/or through testimony in court. Difference between health care proxy and advance directive What is a health care proxy? A health care proxy is a legal document that a person fills out, signs, and has witnessed by two other people. This document appoints someone of the person’s choice to make health care decisions for him or her if he/she is unable to make the decisions. A proxy is a person who has been given authority to act as an agent for another person. On the proxy form, there are sever- al blank lines where a person can make specific wishes known. All hospitals, doc- tors, and other health care facilities are legally bound to honor the decisions stated in the health care proxy. What is an advance directive? Advance directives are documents signed by a competent person giving direction to health care providers about treatment choices in certain circumstances.There are two types of advance directives. A durable power of attorney for health care ("durable power") allows you to name a "patient advocate" to act for you and carry out your wishes. A living will allows you to state your wishes in writing but does not name a patient advocate.
28 What should a client discuss before meeting with an attorney? 1. Have the client list the people they trust most. 2. Has the client discussed the possibility of naming specific friends or family members as a health care proxy? a. Who is most practical to name? Someone who lives far away is probably not a practical choice. 3. Does the client want to name an alternative in case the first choice does not accept or cannot accept responsibility? 4. Has the client discussed his/her wishes regarding life support with the healthcare proxy? If there is a living will, the health care proxy must follow the client’s wishes. III. Tips for Providers: Helping with Permanency Planning IV. Helping Adolescents Deal with Grief Permanency planning is often a difficult topic for providers to discuss because it involves planning for the child’s future without their parent. Here are some ways you can help your adolescents deal with grief: It is important to remember that adolescence is a particularly difficult time in an individual’s development. Body changes and issues of identity are causes of confusion and stress. The death of a parent can throw the mind of even a well-adjusted teenager into great turmoil. Grief is often new to teenagers. With no previous experience to recall, they will look to influential adults to set the tone for what is appropriate. Before you can provide adequate help to a grieving adolescent, you need to check in with your Acknowledge that it may be painful to think about what will happen in the event that we become ill or pass away, but making plans can be empowering and provide a sense of peace. Reassure clients no decisions or actions may be necessary unless it is an emergency situation. Engage clients in a therapeutic process and explore their reasons for feeling anxious or afraid. Help assess the viability of the plan. Will it work? What might keep it from working? Explain the role of an attorney. Make sure that the client knows that everything they tell an attorney is kept confidential even from you unless the client has given the attorney permission to talk to you. Help clients make a list of questions to ask their attorney.
29 with your own feelings. Think of a flight attendant’s instructions on a plane: “Place the oxygen mask over you own nose and mouth before assisting the person next to you.” Be honest and direct; children can always tell when you are “beating around the bush.” Share your feelings as a way of encouraging them to express theirs. If they are having a difficult time attaching to any specific emotions, try sharing a list of typical thoughts and feelings that people experience at a time of loss, such as anger, sadness, fear, loneliness, shame (often associated with a death due to AIDS), and survivors’ guilt. It is normal, when mourning, for people to become sullen and to isolate themselves from others. If, however, depression becomes chronic, professional assistance in the form of counseling, psychotherapy, or a peer support group should be sought. Help identify available supports. The danger is when prolonged under-expressed grief manifests itself in “at risk” behaviors, such as drug and alcohol use and acting out sexually. Additional symptoms to be aware of include restlessness, sleeplessness and/or lethargy, decreased appetite, reduced academic performance, and a sudden change in the adolescent’s circle of friends. An expressed desire to “sleep for a long time” or “join the deceased” should be viewed as a serious threat of suicide. There are many ways to show adolescents that you respect their grief. Ask them how they want to memorialize the deceased. Encourage them to create a personal memorial using a photograph and some meaningful objects. Another option is to plant a tree or bush. If the deceased has been cremated, a plant can be a perfect resting place for the ashes because it beautifully illustrates the cycle of life and provides mourners with a living, growing thing on which to focus their feelings. Teenagers can also create a memory book using photographs, letters, cards, and anything else that reminds them of the person who has died. If the teen keeps a journal or likes to write, suggest they try writing letters to the deceased. This is an excellent way to remain connected to the departed spirit. The year following a death is generally the hardest because of all the “firsts” to contend with—the first birthday without their loved one, the first holiday season, the first anniversary of the death, etc. These dates can be viewed as occasions to honor the deceased’s life. If the person being grieved enjoyed the ocean, take the day off and have everyone share a picnic at a favorite beach. Maybe it was an art exhibit or a sport the child shared with the deceased; in this case, make a trip to the museum, a ball game or plan a special bike trip. This serves two purposes as it celebrates the deceased’s life and shows the teenager what they gained as a result of the knowing the departed—an important component in helping children cope with death. To summarize: - Teenagers must have their feelings heard and respected - If they are having a difficult time expressing themselves, help them explore their grief - Encourage ceremonies and other symbolic gestures to memorialize the deceased - Pay attention to important anniversaries - Be on the lookout for hostile and self-destructive behavior
30 Activity for parents: Parents can create a memory package that will help their loved ones adjust to the loss later on. Using a container that bares some significance, such as a pocketbook or cosmetic bag, the package should include items that will help the child recall their relationship with their parent. Things to consider are past mother’s or father’s day cards, birthday cards, pictures and crafts that were made at school or camp, photographs, especially ones of the parent and child, and baby items, like shoes or rattles. Any item that holds special importance can be included. A nice touch is to attach a card or letter with a personal message to the child. Parents can use this opportunity to impart important life lessons and values to the child.
31 Transitioning Transitioning Transitioning Transitioning Transitioning Transitioning Transitioning Transitioning Transitioning
32 Chapter 7: Transition: Entitlements Transition Tips: Benefits and Entitlements 1.Include your adolescent in the entitlement process from an early age. 2.Explain the various entitlements and the application processes. 3.Provide your adolescent with a notebook and folder for important documents, including their benefit rights. 4.Instruct your adolescent to use the notebook to keep track of appointment dates, names of all agency contacts, and what was discussed. 5.Discuss the importance of meeting deadlines. Explain the consequences of failing to meet deadlines. 6.It is important to encourage clients to fill out their own paperwork, make their own phone calls, and self-advocate—these are ways to help them transition. I. Background Information Dealing with benefits issues is often overwhelming. For people living with HIV, the processes to obtain benefits can be very confusing. Benefits programs change so often that even benefits counselors and policy advocates have a hard time keeping up! The entitlement process is further complicated by the fact that the system changes when adolescents turns 18. Adolescents become eligible for different entitlements, and the often complex application processes may discourage youth from seeking out appropriate benefits. Entitlements are often handled in “crisis mode,” when the youth is at risk of becoming homeless, or in other emergencies. It can be very frustrating to see your client getting the “run around” when they are trying to obtain entitlements. As a long-time advocate, you may want to handle everything for them. Unfortunately, this hurts your youth more than it helps because you are not always going to be there. If you start preparing your adolescent early, this will help them learn to navigate the difficult world of entitlements on their own. By encouraging your adolescent to advocate for themselves, it empowers them and prepares them for the future. This section provides information on how to help your teenager navigate state and city agencies. Detailed information on application processes is included in the Resources section of the booklet.
33 II. Entitlements This section covers the following entitlements: Medicaid, Family Health Plus, Social Security Income (SSI), AIDS Drug Assistance Program (ADAP), and HIV/AIDS Services Administration (HASA). For each entitlement, you will find the following information: Introduction Services provided Eligibility In addition, we have provided a special section on advocating HASA. *Detailed information on application processes, the documents needed to apply, and contact infor- mation is provided in the Additional Resources section of the booklet. i. Medicaid Introduction: What is Medicaid? Medicaid is a federally-funded, state-run program that provides medical assis- tance for individuals and families with limited incomes and resources. Visit http://www.health.state.ny.us/health_care/medicaid/ for more information. Services Provided: Doctor and dentist services Clinic and hospital services Nursing home and home health care Family planning services Prenatal care Pediatric care Mental health care Prescription drug coverage Optometrist services and eyeglasses Eligibility Can qualify if one or more of the following statements are true: Have children and a limited income. Receive or are eligible for Supplemental Security Income (SSI). Pregnant woman who meets income requirements. Family’s assets are less than $2,000. Receive adoption assistance or foster care assistance.
34 ii. Family Health Plus Introduction: What is Family Health Plus? Family Health Plus is a public health insurance program for adults between the ages of 19 and 64 who do not have health insurance — either on their own or through their employers — but have incomes too high to qualify for Medicaid. Services Provided Health care in the Family Health Plus program is provided through managed care plans.You must select a participating health plan when you apply for Family Health Plus. When you choose a health plan, you will have a regular doctor, get regular check-ups and see specialists if needed. Some plans also offer dental care. Coverage includes: Physician services Inpatient and outpatient hospital care Prescription drugs and smoking cessation products Lab tests and x-rays Vision, speech and hearing services Rehabilitative services (some limits apply) Durable medical equipment Emergency room and emergency ambulance services Behavioral health and chemical dependence services (which includes drug, alcohol and mental health treatment - some limits apply) Diabetic supplies and equipment Hospice care Radiation therapy, chemotherapy and hemodialysis Dental services (if offered by the health plan) Eligibility Family Health Plus is available to single adults, couples without children, and parents with limited income, who are between the ages of 19 and 64, are residents of New York State and United States citizens or fall under one of many immigration categories. If client has health insurance—either on their own or through their employer, or is eligible for employer-sponsored health coverage through a federal, state, county, municipal or school district benefit plan—they are not eligible to enroll.
35 iii. Supplemental Security Income (SSI) Introduction: What is SSI? Supplemental Security Income (SSI) is federal program for people who are disabled and unable to work full-time. If clients qualify, they will be sent a check every month. Clients cannot apply for these benefits through HASA caseworker or at public assistance. Visit http://www.ssa.gov/notices/supplemental-security-income/ for more information. Services Provided: Monthly cash benefit Eligibility: Aged (age 65 or older) Blind; or Disabled And: Has limited income and resources; and Is a U.S. citizen or a non-citizen who meets the alien eligibility iv. AIDS Drug Assistance Program (ADAP) Introduction: What is ADAP? The New York State Department of Health's AIDS Institute has established four programs which provide access to free health care (HIV Drugs, Primary Care, Home Care, and APIC) for New York State residents with HIV infection who are uninsured or underinsured. The four programs use the same application forms and enrollment process. Visit http://www.health.state.ny.us/diseases/aids/resources/adap/index.htm for more information. Services Provided 1. AIDS Drug Assistance Program (ADAP) The AIDS Drug Assistance Program (ADAP) provides free medications for the treatment of HIV/AIDS and opportunistic infections. The drugs provided through ADAP can help people with HIV/AIDS to live longer and treat the symptoms of HIV infection. ADAP can help people with partial insurance or who have a Medicaid spend down requirement. 2. ADAP Plus (Primary Care) ADAP Plus (Primary Care) provides free primary care services at selected clinics, hospital outpatient departments, office based physicians and lab vendors. The services include ambulatory care for medical evaluation, early intervention, and ongoing treatment.
36 3. HIV Home Care Program The HIV Home Care Program provides coverage for home care services to chronically medically dependent individuals as ordered by their physician. The program covers skilled nursing, home health aide services, intravenous therapy administration, medications and supplies and durable medical equipment when ordered by a doctor for specific conditions. Services must be provided through a home care agency which has enrolled in the program. 4. ADAP Plus Insurance Continuation Program (APIC) APIC can pay for commercial health insurance premiums for ADAP eligible clients. APIC will pay for the continuation of a policy for people presenting to the program who: have existing coverage purchased directly from an insurance company or agent, coverage through their employer where the employee contribution for the coverage creates a financial hardship or COBRA coverage when a person loses their job and cannot afford the premiums. Eligibility Residency: New York State (U.S. citizenship is not required, undocumented persons can apply) Medical: ADAP, ADAP Plus and APIC: HIV-infection (asymptomatics are eligible) Home Care: AIDS or HIV illness and chronic medical dependency due to physical or cognitive impairment from HIV infection Financial: Income less than $44,000/year for a household of one, less than $59,200 for two, and $74,400 for three or more Liquid assets less than $25,000 v. HIV/AIDS Services Administration (HASA) Introduction: What is HASA? The HIV/AIDS Services Administration (HASA) provides services and benefits to individuals and families with AIDS and advanced HIV illness. Services Provided: Home and hospital visits Individualized service planning Intensive case management Direct linkage to Public Assistance, Medicaid and Food Stamp benefits Assistance applying for SSI/SSD benefits Emergency, transitional, and permanent housing assistance and rental assistance
37 Home care and homemaking services Employment and vocational services Information and referrals to community-based agencies Counseling for clients and their families on daily living skills and available support system Guardianship and permanency planning for families with children Burial assistance What long-term housing options are available? Congregate Housing Scatter Site I Housing Scatter Site II Housing Independent Housing Congregate Housing Congregate housing is multi-unit housing with support services for seniors and for adults with disabilities who do not want to live alone. It combines privacy and companionship by offering each resident a private bedroom or apartment, and shared living space and activities. It is a rental agreement and client pays none or a portion of the rent, no utility and it is furnished. Services: On-site support staff, meals, pantry, activities, groups. Scatter Site 1 Permanent housing for single adults and families. Apartments are leased in the community based organization’s name. Tenant pays 30% of their income. Services: Off-site support staff offer case management, groups, life-skills training. Scatter Site II Apartment programs where client’s name is on the lease and they only receive 3 months of case management. Services: Off-site support staff (first 3 months of case management) and life-skills training. Independent Apartment programs where lease is in client’s name. Tenant pays for rent, utilities, cable and furnishing. HASA Vocational Rehabilitation Services Program: Vocational Rehabilitation Services Program for HASA clients provides a comprehensive range of vocational and educational activities. The Vocational Rehabilitation Services are voluntary and may be an option for your clients. The HASA Certified Rehabilitation Counselor (CRC) offers specialized coordination with internal and external program services. Clients are referred to other agencies while participating in vocational services within the agency.
38 The services include: 1. Vocational Rehabilitation Counseling: Focuses on client employment activities. Clients receive vocational counseling with CRC. 2. Client Rehabilitation Plan: This is a client’s written plan. The plan outlines the specific goals for a client to get a job. 3. Vocational Group: This is a vocational forum, designed to accommodate 10-15 members each week. Facilitated by CRC. 4. Career Exploration: Examination of the variety of occupations available, periodically conducted by CRC for each client. 5. Skills Training: An array of training activities provided by licensed vocational schools and other training institutions. 6. Skills Upgrading: When a client posses certain skills, the CRC refers client to workshops and classes that specialize in those skills. 7. Job Placement: CRC identifies appropriate employment service agencies that offer placement into actual positions. 8. Resume and Cover Development: Clients learn how to write and prepare cover letters and resumes. 9. General Equivalency Diploma (GED): Clients are referred to GED programs. 10. Literacy Classes: HASA refers clients to classes. 11. English as a Second Language (ESL): CRC coordinates participation in basic ESL courses. 12. HASA Readiness Groups: prepares clients to deal with a range of vocational concerns. 13. Skills Day: Introduces clients to a variety of skills, including basic computer literacy, typing, preparation of resumes and cover letters, etc. 14. Employment Resources Library: Vocational Rehabilitation Program maintains a resource library with vocational-related material, such as videos. 15. Vocational Educational Services for Individuals with Disabilities (VESID): CRC makes referrals for clients who are eligible. VESID offers job placement, financial assistance for college, or training expenses. If you have questions about HASA Vocational Rehabilitation Program, call 212.971.3188. HASA Eligibility HASA eligibility is based solely upon an applicant's medical diagnosis and permanent residency within the five boroughs of New York City. To establish eligibility, an applicant must, at any time, have been diagnosed with clinical symptomatic HIV as defined by the Centers for Disease Control and Prevention (CDC) or with AIDS as defined by the New York State AIDS Institute.
39 HASA Eligibility (cont.) Verifiable, Physician-signed documentation of: T-Cell Count <200 Diagnosis of an AIDS Defining Illness or Opportunistic Infection There are no expiration dates on diagnosis: Diagnosis can be from ANYTIME since the client was diagnosed HIV positive. For more information on advocating HASA visit http://www.sbls.org/hivfact1.htm Advocating HASA: Advice to Share with Your Transitioning Youth If case manager does not get back to you, call the site supervisor. If that does not work, call the center director (see Additional Resources section for contact information). If you are having difficulty with HASA, call legal service agencies, such as South Brooklyn Legal Services (see Additional Resources section section). Persistence. Persistence. Persistence. Follow up!!! Follow up!!! Build relationships. A strong working relationship with government agency employees and housing providers is very helpful. Write clear cover letters. Make copies for everything you’ve submitted and confirm receipt of submissions. Use the chain of command and other forms of accountability. Cite procedures, protocol, litigation, or law relating to the issue. File fair hearings and HASA appeal hearings when needed (see below). Follow applications/paperwork along their paths and call to confirm their movement from one place to another. Use your social skills to finesse results. Search for creative solutions to obstacles that may arise. Maintain a realistic and positive attitude at all times. Make sure you are not turned away due to the type of documentation provided to the Service Line. Always call the Service Line to ensure documents were received. Ask caseworker for a copy of the HASA Clients' Bill of Rights. Always document conversations including date, name of contact, etc. Ensure that you receive receipts whenever applying for benefits or services. If an agency employee will not help you, ask for a written explanation of the denial and go to the site director. Make sure you follow up on everything. Do not assume that a HASA worker will take care of problems. Keep a list of the papers you need to take to HASA and the deadlines for bringing them in. Bring someone with you if you need support or ask someone to go in your place if you are too ill. If you can't keep an appointment, call to say you can't make it and schedule another appointment. Keep your appointments. If you are homeless or have no food or income, you should take your M-11Q or other documentation to the Service Line in person and ask for emergency assistance, including emergency housing placement. Don't give up if the employee will not help you right away. Always ask for the name of the person with who you are working.
Fair Hearing: Ask your unit supervisor for a case conference. This is an informal meeting at your welfare center. A fair hearing is a formal hearing in front of an Administrative Law Judge (ALJ). If you win (over 90% of clients win their hearings), the ALJ can order HASA to fix your problem. There are two different types of fair hearings available to HASA clients, one through the state government and one through HASA itself.You should request both hearings. The phone number to request a state fair hearing is 1-800-342-3334 or 877-209-1134; fax to 518-473-6735 or you can request a hearing in person at the Office of Temporary and Disability Assistance located at 14 Boerum Place in Brooklyn. The phone number to request a HASA fair hearing is (212) 620-9893; the fax number is (212) 620-9894.You can also request a hearing in person at the HASA Fair Hearing and Appeal Unit located at 12 West 14th Street, 6th Floor in Manhattan or online at www.otda.state.ny.us. The reception desk at your HASA center should have the forms for a HASA fair hearing available. 40
41 Youth to Healthy Adulthood:
42 Additional Resources Transition Tools Transitional Charts: Documents to Monitor Young Adults’Transitional Processes Transition begins when the child is young. It is important that your youth understands that one day he/she will be have another provider. As the current provider, it is your responsibility to document your client’s transition achievements. You can include the following documents in your client’s chart to document transition: 1. Transition Tool White areas are suggested ages to address individual skills but plans should be individualized based on development Provider should initial and date each achievement 2. Adolescent Individualized Transition Plan This plan should be based on your client’s needs and interests 3. Transition Healthcare Assessment Your teen should fill out this sheet so you can assess their transitional needs You can discuss the assessment with your teen 4. Adherence Tool The staging questions, seven day recall, and general questions can be used to assess client’s current state of adherence The stage-specific activities are recommended activities This tool can be used multiple times to assess and assist with medication adherence
43 Name: DOB: MR# < 11 years of age 11 to 14 years of age 15 to 24 years of age Date Initiated: Date Disclosure: Discussed Achieved Discussed Achieved Discussed Achieved Knowledge of Health Condition and Management Child interacts directly with health care team, asks questions. Assess child's knowledge and perception of diagnosis. Build on their understanding. Assess adolescent/family's readiness and assist with disclosure. Able to answer "What is HIV?" Able to answer "What are T cells?" Able to answer "What is a viral load?" Verbalizes names and dosages of medications. Verbalizes rules for taking medications (with food, etc). Able to fill prescriptions and obtain refills. Verbalizes known possible side effects of medications. Takes medications independently. Able to independently make appointments. Able to independently give history. Verbalizes when and how to call the doctor. Verbalizes when and how to access urgent/emergent care. Able to set up transportation for appointments. Keeps calendar of appointments. Able to identify members of the health care team, roles and how to contact. Adolescent Engages in Preventative Health Behaviors Visiting dentist every 6 months. Current with immunizations and health screenings. Engages in preventative behaviors (exercise, nutrition, TSE, BSE, etc). Abstains from using alcohol, drugs, cigarettes and/or aware of risk reduction behaviors. Adolescent Demonstrates Knowledge of Responsible Sexual Activity Identifies high risk situations for exploitation and victimization. Knowledge of contraception options, STD, STD prevention Understands implications of diagnosis on pregnancy. Adolescents Demonstrates Knowledge of Health Insurance Concerns and Issues Identifies when eligibility terminates for health insurance. Verbalizes type of insurance, limits of coverage, how to contact. Knowledge of AIDS Insurance Continuation Program. Adolescent Demonstrates Knowledge of Community Resources Case Management - THAP, etc Support Groups ADAP: AIDS Drug Assistance Program White areas are suggested ages to address individual skills but plans would be individualized based on development, social situation & time of entrance into program. Please date and initial discussion/achievement boxes. 1. Transition Tool
2. Adolescent Individualized Transition Plan UniversityofSouthFlorida,PediatricInfectiousDisease Pre 21 year old Transition Assessment Projected Date: Participants: Education, Vocation, Career Plan: Family Support: Housing/Goals for Independent Living: Transportation: Funding (insurance, copay, prescriptions, OTC, SSI): Discuss timing of transition to adult care: Other: Plan: Signature: 24 year old Transition Assessment Projected Date: Participants: Education, Vocation, Career Plan: Family Support: Housing/Goals for Independent Living: Transportation: Funding (insurance, copay, prescriptions, OTC, SSI): Transition to adult care, choose provider: Plan: Signature: Initial Adult Care Appt: Physician: Phone: Records release consent signed: Records forwarded: First appt follow up phone call: 3 month follow up phone call: 44 44
45 Do you understand your health condition and how to take care of yourself? circle one 1 Do you understand what caused your medical condition? Yes No Not sure 2 Do you understand the changes/symptoms caused by your medical condition? Yes No Not sure N/A 3 Do you manage your own daily treatment needs? Yes No Sometimes 4 Do you have any problems with your daily treatment needs? Yes No Sometimes 5 Do you understand the tests (blood, x-ray) you have to take? Yes No Not sure 6 Do you know how to prevent spreading this to others? Yes No Not sure Do you know what to do to keep healthy? circle one 1 Do you have a Primary Care Physician (PCP) that you see at least once a year? Yes No Not sure 2 Are your shots up to date? Yes No Not sure 3 Do you use alcohol, cigarettes, drugs? Yes No Sometimes 4 Do you have unprotected sex? Yes No Sometimes N/A 5 Do you exercise 3 times a week or more? Yes No Not sure 6 Do you see a dentist every 6 months? Yes No Not sure 7 Do you brush and floss your teeth daily? Yes No Sometimes Do you know what to do to keep healthy? circle one 1 Do you have a phone to use in case of an emergency? Yes No Sometimes 2 Do you have the phone numbers of family and friends to call in emergencies? Yes No N/A 3 Do you have the phone numbers of health and non-health emergency services, such as poison control, fire and police? Yes No Not sure 4 Do you know where the closest emergency room is? Yes No Not sure Do You know how to monitor any special health care needs? circle one 1 Can you recognize when you are getting sick? Yes No Sometimes 2 Do you know when you need to call the doctor? Yes No Sometimes Do you know how to manage health care needs? circle one 1 Are you responsible for making your own appointments? Yes No Sometimes 2 Are you responsible for refilling your own medications? Yes No Sometimes 3 Do you know what pharmacy you use and have their phone number handy? Yes No Not sure 4 Do you know the names and doses of your medications? Yes No Not sure N/A 5 Do you know the common side effects? Yes No Not sure N/A Do you know how to communicate with health care providers? circle one 1 Do you know where to look for answers to your health questions? Yes No Sometimes 2 Do you feel comfortable asking questions at your appointments? Yes No Sometimes 3 Do you know how to contact your social worker or case manager? Yes No Not sure Do you know how to use community services? circle one 1 Have you used services in your community? Yes No Sometimes 2 Do you discuss your health care needs with your school nurse? Yes No Sometimes Do you demonstrate responsible sexual activity? circle one 1 Are you able to provide a reliable sexual history? Yes No Not sure N/A 2 Do you know what an STD is and how it can affect you? Yes No Not sure N/A 3 Do you have enough information about birth control and ways to prevent STDs? Yes No Not sure Do you obtain information and reproductive counseling when needed? circle one 1 Do you understand how your medical condition affects becoming pregnant or having a child? Yes No Not sure N/A 2 Do you understand the problems associated with an unplanned pregnancy? Yes No Not sure N/A 3 Do you think you understand the responsibilities of being a parent? Yes No Not sure Continued on following page. ¡ 3. Transition Healthcare Assessment
46 Do you have knowledge of health insurance concerns and issues? circle one 1 Do you know the rules and requirements of your health insurance? Yes No Not sure N/A 2 Are you able to cover expenses not covered by your insurance? Yes No Not sure N/A 3 Have you applied for income assistance, SSI or other public services? Yes No Not sure N/A 3. Transition Healthcare Assessment - continued Do you use transportation safely? circle one 1 Do you have a drivers license? Yes No N/A 2 Do you use buses or other forms of public transportation? Yes No Sometimes N/A 3 Do you use bus or other travel schedules for getting rides? Yes No Sometimes N/A 4 Do you have the money you need to get bus passes or use your car? Yes No Sometimes N/A 5 Do you have any problems in getting to where you need to go? Yes No Sometimes N/A 6 Do you use Medicaid Share Van, Medicaid Cab? Yes No Sometimes N/A 7 Do you feel safe taking the bus, van, or driving? Yes No Sometimes N/A 8 Do you know how much time you need to get to your appointments on time? Yes No Sometimes N/A Comments or Questions: Name: DOB: MR# Adapted from California Healthy and Ready to Work transition matierials, 1 MCJ D6HRW9-01-0, University of Southern California, Department of Nursing: www.cahrtw.org Do you keeps track of your health records? circle one 1 Do you have a copy of your health records, current medications, doctor contact number, and address? Yes No Not sure 2 Do you have an insurance card or copy of it? Yes No Not sure N/A 3 Do you have a method of keeping tract of your health care appointments? Yes No Not sure
47 ID: ____________________________ Date and Day of Week: ___/___/___ _______ Medications: What times did you take HIV meds each day? Did you miss any doses? Which doses did you miss? Why did you miss these doses? If meds were taken at different times each day, why? For clients not on meds: What times do you think would be good to take HIV meds each day? Adherence Tool SEVEN-DAY RECALL Activities: What was your schedule like this week? Is this what your schedule is typically like? If no, what was different and why was it different? Feelings: How did you feel (emotionally and physically) this week? Why do you think you felt this way? Is this how you typically feel? If no, how do you usually feel? AM AM AM AM AM AM AM PM PM PM PM PM PM PM
48 For clients taking HIV meds: 4) What times did you take HIV medications on that holiday? 5) Did you miss any doses on that holiday? 6) Which doses did you miss? 7) If meds were taken at a different time on that holiday, why? For all clients: 1) What did you do and how did you celebrate the last holiday? 2) Did your schedule differ at all from your typical daily schedule? If so, how was it different from your daily schedule? 3) How did you feel (emotionally and physically) on that holiday? Please list all medications taken, including the # of doses/day, and times taken. 1) 2) 3) 4) b) If yes, why were you hospitalized? For all clients: 1) Were you hospitalized during the previous month? a) If yes, when were you hospitalized? 3) How many bottles of medicine do you have at home? 4) Did you have any problems this month in getting your HIV medsmedications from your pharmacy? If yes, please explain. For clients taking HIV medications: 1) When was the last time you called or spoke to your pharmacy? 2) Who called the pharmacy for your last pick-up? 5) 6) 7) 8) HOLIDAYS HOSPITALIZATIONS PHARMACY INFORMATION ID: ____________________________ Date and Day of Week: ___/___/___ _______ Adherence Tool
49 Assess client’s knowledge of HIV pathogenesis, viral load, t-cell count and educate client on these issues based on their level of knowledge and understanding. Discuss clients’ feelings and knowledge about HIV and meds and explore the sources from which client gets his/her info. Begin to introduce new or additional information on HIV to correct any misinformation. Elicit information about client’s HIV experience, previous medical care, and use of HIV medications. Help raise clients’ awareness of the potential risks and/or consequences of their actions and behaviors. Explore client’s feelings and understandings of illness, treatment and medications. Assess client’s level of comfort with health professionals and cultural attitudes toward health care. Introduce the concept of “client-provider partnerships” in decision- making and the importance of open communication. Begin to discuss disclosure and help person to become more comfortable with their own HIV status. Begin discussing with caregivers the possibility of disclosing their child’s HIV status to those children (particularly for older children and adolescents) who are unaware of their own status. Suggest client get involved with peer counseling/groups and begin talking to peers who take meds or give meds to their children. List others: _______________________________________________________ _______________________________________________________ Inquire if client has heard anything about HAART meds from “uninformed sources” in order to correct misinformation. Have client speak with someone in same situation who has been successful with medications. Discuss how meds impact self-image—“I’m sick.” Assist clients to develop an accurate risk perception of the costs and benefits of taking the medications, along with realistic expectations of taking meds. Begin to connect benefits with client’s long-term goals. Link benefits of taking medication to client’s long-term goals (e.g., finishing school, having a healthy baby, etc.) Do a mock medication week/month with candy. Have client keep a diary of daily activities before starting meds. Present the options of journal writing to explore feelings around HIV, illness, taking medications and self-image. Have client think of a friend/support person who could remind them to take/give meds. Explore with client how their current behavior and actions and the new behavior may impact their self-image. Help client to understand and assess their options for resolving prob- lems that may hinder their ability to take medications or maintain adherence. List others: ________________________________________________________ ________________________________________________________ Stage Specific Activities for Providers Working with Clients Regarding Medication Adherence CONTEMPLATIONPRECONTEMPLATION (Please circle activities you used:)ID#: ______________________ Have you been taking medications regularly for more than 6 months? Yes (Maintenance Stage) No (go to next question) Are you in the process of trying to take medication regularly? Yes (Action) No (go to next question) In the next 30 days, are you going to consider taking medication regularly? Yes (Preparation Stage) No (go to next question) In the next 6 months, are you going to consider taking medication regularly? Yes (Contemplation Stage) No (Precontemplation Stage) Use the following questions to identify your client’s current stage: Adherence Tool
50 Have client speak with someone in same situation who has been successful with meds. Explore clients’ fears about meds via role play. Help client identify and develop skills needed to begin taking meds or to improve adherence if already on meds (see examples below.) Teach and practice pill swallowing with candy. Conduct a medication taste test with clients on liquid meds. Use medicine diluters, e.g., flavored milk or yogurt. Have client do a “dry run” of taking meds with candy to make sure med times really work with daily routine. Develop a plan for management of side effects, including ways to manage them and pre-prescribe the solution, e.g., Imodium for diarrhea. Link client to home services, pharmacy support, and home medicine deliveries. Help client develop and keep to a regular daily schedule. Review available resources to use as reminders, e.g., beepers, pill boxes, calendars. Provide additional reminders if needed. Provide a resource list of stress reduction, respite, and medical care services. List people who are important and are affected by whether client takes meds. Discuss how these people can help with the medication regimen. Encourage client to take responsibility for choosing and carrying out changes. Provide both individual and family counseling for preparing to begin medications. Home care intervention when necessary and feasible; offer in-home support, help to set up appropriate medication storage, assist with scheduling and administration of child’s medications. List others: _____________________________________________ _____________________________________________ Help clients to develop contingency plan to prevent potential relapses. Review basic HIV and medication education and provide client with additional updated information when available. Continue to conduct medication regimen review. Give extra support and guidance during life transitions, e.g. client changes schools. Help promote support groups by providing lunches and/or parties. Schedule the support groups’ medical appointments on the same clinic day. Work around environmental barriers, upcoming vacation, family gatherings, holidays. Suggest client become a peer educator to other clients on HAART. Continue to reward client at pre-set benchmarks for their success with HAART. Suggested rewards include: ceremonies, special lunches, incentives, giving client extra attention, publicly rewarding client. Continual review of ALRs if needed. Continue to assess clients’ service needs (visiting nurse service, home health aide, counseling, support group, family support, childcare, etc.) Encourage clinic staff and other members of clients’ support network to acknowledge barriers client has overcome and to congratulate them for their successes. Notice and compliment changes client has made in his/her social environment that support adherence. Encourage client to remember times before taking meds and compare to present situation. Stress the benefits of the present situation and changes made. Help client to reframe temporary relapses. Discuss with clients how they can learn from the experience to help him/her succeed later. List others: _____________________________________________ _____________________________________________ Continue to assess and build upon skills needed to maintain good adherence (e.g., problem solving skills, self-efficacy, making positive changes in environment.) If client is having difficulties, remind him/her of another difficult experience/behavior that was achieved or overcome. Normalize coping skills. Discuss how taking meds might be disrupting client’s daily schedule. Link med schedule to daily activities and change med schedule when needed. Set med times when client will be home to avoid public administration of medication. Have client assess where they spend time outside of home and leave a day’s worth of medication there, e.g., relative’s house. Create a chart graphing client t-cell count and viral load in order to track his/her progress and success. Reward client at pre-set benchmarks for their success with HAART. Suggested rewards include: ceremonies, special lunches, incentives, giving client extra attention, publicly rewarding client. Encourage clinic staff to recognize client success and congratulate client. Continue to assess clients’ service needs (for adherence and other needs) and assist client in making appropriate arrangements to receive such services. Meditation or other forms of relaxation therapy to manage symptoms. If English is not client’s native language, have pharmacy print instructions in second language. If client’s reading level is low, have pharmacy print instructions in symbols. Maintain frequent contact with clients new to HAART. Encourage client to make changes in their social environment that will help with adherence (e.g., making new friends who support adherence.) Encourage clients to attend appropriate support groups. After each successful week, have client give him or herself a “treat.” Give clients compliments and statements of appreciation and understanding for their efforts. Have providers from different department inquire about clients’ meds to build overall support system for clients’ adherence. List others: ________________________________________________ Stage Specific Activities for Providers Working with Clients Regarding Medication Adherence MAINTENANCE ACTIONPREPARATION (Please circle activities you used:)ID#: ______________________
51 Self-Advocacy and Self-Care Information published in this booklet is considered to be true and correct at the date of publication. Changes in circumstances after the time of publication may impact on the accuracy of the information. We have no control at all over the information on linked sites. About HIV TRUE FALSE DONT KNOW HIV and AIDS are the same thing HIV is a virus that attacks a person’s immune system The cells of the immune system that fight infection are called “T-cells” or “CD4 cells” The amount of HIV in a person’s blood is called “viral load” There is a cure for HIV You can tell if a person has HIV by looking at him or her People with HIV may feel healthy for years A person with HIV will stay healthy if their “T-cells” are high and their “viral load” is low There is a vaccine for HIV Even though a person with HIV may feel healthy, the virus is damaging his/her immune system AIDS is the last stage of HIV HIV stands for Human Immunodeficiency Virus AIDS stands for Acquired Immune Deficiency Syndrome People with AIDS my get sick easy, lose weight, have yeast infections, pneumonia, and low “T-cells” Treatment TRUE FALSE DONT KNOW There is a cure for HIV If I take my medicine, I don’t have to use condoms when I have sex It is OK to miss doses of medication If I stop taking one HIV medication, I should stop all of my HIV medication I should call the doctor/nurse/pharmacist if I stop my medicine If I miss doses of medicine, the virus will become resistant and the medicine won’t work I should see the doctor and check my “T-cells” and “viral load” every 2-3 months The cells of the immune system that fight infection are called “T-cells” or “CD4 cells” The amount of HIV in a person’s blood is called “viral load” A person with HIV will stay healthy if their “T-cells” are high and their “viral load” is low If my viral load is “undetectable” I am cured of HIV Alcohol, marijuana and other drugs do not interact with my HIV medicine If I forget to take my medicine, I should take it as soon as I remember, even if it is a few hours University of South Florida/All Children’s Hospital, Pediatric/Adolescent Infectious Disease The following tool can be used to assess adolescents’ knowledge of HIV: HIV Assessment
52 Primary Doctor Date: Time: Location: Doctor's Name: Questions for Doctor & Discussion Topics: Important Issues Presented by Doctor: Next Appointment Date: Referrals Date: Time: Location: Doctor's Name: HIV Assessment In addition, we have provided an ‘Appointment Tool’ that may be used by patients to document their medical encounters with their primary care physician and specialists.
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54 Employment Employment Certificate (previously known as Working Paper) Students 14-17 who work must have an Employment Certificate. Students should contact their school or regional office for information about where to obtain an Employment Certificate. All NYC public intermediate/junior high and high schools are required to issue Employment Certificates to public school students as well as to students who attend private, parochial and out-of-state schools. They are required to issue the Certificates until the last day of the official school calendar. For further information please contact: New York City Department of Education Office of Attendance 212.374.6095 Education & Job Information Center Brooklyn Public Library Grand Army Plaza Brooklyn, NY 11238 1.718.230.2177 http://www.brooklynpubliclibrary.org/ejic.jsp Agencies for Young Adults NOTE: Proof of eligibility is required in most places. Age and income requirements may apply. Call each site for details. Access for Women New York City College of Technology Expanding Options for Teen Parents & Youth 300 Jay Street, H-407 Brooklyn, NY 11201 718.552.1131 Academic skills, Pre-GED preparation, career education and family life counseling. For out-of- school youth. Ages 16-21. Catholic Charities Diocese of Brooklyn Dr. White Community Center 200 Gold Street Brooklyn, NY 11201 718.875.8801 In-School Youth Program: tutoring, counseling, job readiness preparation. Income and other eligibil- ity requirements. Ages 14-18. Colony South Brooklyn Houses 297 Dean Street Brooklyn, NY 11217 718.625.3810 Summer youth program: vocational training and job placement for the summer. Ages 14-21. In- School Youth Program: basic skills, work readiness, tutoring, mentoring. Income restrictions. Ages 14-18.
55 Covenant House Regional Training Center: 346 West 17th Street New York, NY 10011 212.727.4014 Brooklyn Resource Center: 75 Lewis Avenue Brooklyn, NY 11206 718.452.6730 20 New York Avenue Brooklyn, NY 11216 718.398.5136 http://www.covenanthouseny.org Job training and employment services. After completing job readiness training at a Brooklyn Resource Center teens may participate in programs offered at the Regional Training Center: bank teller, culinary arts, desktop publishing, introduction to computers, silk screening, nurse’s aide, con- struction, security guard. Youth currently working are welcome to come to community site to meet counselors and participate in life-skills workshops. Ages 16-21. Crown Heights Service Center 1193 Dean Street Brooklyn, NY 11216 718.774.9800 In-School Youth Program: academic support, job readiness, counseling, career guidance, college advisement and placement in summer youth employment program. Two-year program. Ages 14-18. Educational and career guidance for out-of-school youth. Crown Heights Youth Collective 915 Franklin Avenue Brooklyn, NY 11216 718.756.7600 http://www.cfapa.com Job readiness workshops and career counseling. Ages 14-26. Monday-Friday: 10 AM-4 PM. The Door 121 6th Avenue (enter at 555 Broome Street) New York, NY 10013 212.941.9090 http://www.door.org Job readiness and job placement. Also legal, health, counseling, day care, educational and recre- ational services. Ages 12-21. English, Spanish and Chinese spoken. Call for appointment. FEGS/Career Development Institute 105 Bruckner Boulevard, 2nd Floor Bronx, NY 10454 718.292.3930 www.fegs.org GED preparation, job placement and computer workshops. Income and other eligibility require- ments. Ages 19-21.
56 Grand Street Settlement 80 Pitt Street New York, NY 10002 212.674.1740 Contact: Pablo Tejada, ext. 288 http://www.grandstreet.org Youth on the Move Program: job readiness and job placement. Participants must join Teen Services, a comprehensive youth program. Ages 14-19. Job Corps Nonresidential Program: Brooklyn Job Corps Academy 585 DeKalb Avenue Brooklyn, NY 11205 718.623.4000 Admissions and Residential Program: 185 Montague Street, 4th Floor Brooklyn, NY 11201 718.624.8939 http://jobcorps.doleta.gov http://www.jobcorpsny.com Federally funded education and job training/placement for low-income, at-risk youth. Residential and nonresidential programs. Stipend included. Pre-admissions orientation Mondays and Tuesdays, 1:45 PM, at Montague Street location (birth certificate and Social Security Card required). Ages 16-24. New York City Department of Youth and Community Development NYC Youthline 800.246.4646 800.246.4699 (TDD) Confidential and anonymous counseling for parents and youth. Information about thousands of services throughout the city, such as vocational/career opportunities, tutoring and after-school pro- grams. Monday-Friday: 9 AM-9 PM; Saturday-Sunday: noon-8 PM. New York City Job and Career Center Manhattan Branch 255 West 54th Street, 2nd Floor New York, NY 10019 212.247.5650 Job application, resume and interviewing workshops. Career guidance. College and vocational exploration online. Group learning for fee. Ages 14+. New York State Department of Labor Youth Services http://www.labor.state.ny.us/working_ny/finding_a_job/youth/youth.htm Listing of state-funded Youth Education, Employment and Training Programs (YEETP) for in-school and out-of-school youth; also apprenticeship programs and career information. Opportunities for a Better Tomorrow Youth Employment Program 783 Fourth Avenue Brooklyn, NY 11232 718.369.0303 http://www.obtjobs.com Job training, clerical skills, basic computer training, typing, business courses, ESOL and GED classes. Ages 17+. Call for appointment.
57 Project Reach Youth 199 14th Street, 3rd Floor Brooklyn, NY 11215 718.768.0778 http://www.pry.org Variety of teen programs, such as GED preparation and tutoring. Job training and placement. Ages 13-18. Call for information. Ridgewood/Bushwick Senior Citizens Council Youth and Education Department 1474 Gates Avenue Brooklyn, NY 11237 718.381.9653 Youth Employment Program: job readiness, tutoring, career exploration and counseling, intern- ships. For low-income, in-school youth. Ages 14-18. Registration in late August. St. Nicholas Neighborhood Preservation Corporation/YouthWorks 161 Graham Avenue Brooklyn, NY 11206 718.486.7180 Twelve-week training program prepares unemployed, out-of-school youth to work in programs for school-age children, such as day care, community recreation centers and after-school programs. Daily stipends for lunch and MetroCard; plus completion stipend upon graduation. Also GED prepa- ration. Ages 19-21. Vannguard Urban Improvement Association, Inc. 613-619 Throop Avenue, 3rd Floor Brooklyn, NY 11216 718.453.3330 GED preparation for out-of-school youth. After-school education programs for in-school youth. Ages 14-20. Vocational Foundation, Inc. One Hanson Place, 14th Floor Brooklyn, NY 11243 718.230.3100 ext. 1025 http://www.vfinyc.org Job training in hospitality/travel and tourism, medical billing and computer technology. Also aca- demic classes, counseling and job placement. Reading level of 7th grade or above required. Ages 17-30 (young fathers); ages 17-21 (all others). YouthBuild Urban Strategies YouthBuild 287 Sumpter Street Brooklyn, NY 11233 718.452.5479 Combined GED/job training program in which youth learn construction skills by building affordable housing in local communities. Income restrictions. Out-of-school youth only (proof required). Ages 16-24.
58 Permanency Planning Legal Assistance Agencies we recommend contacting regarding wills/permanency planning to ensure adolescents have documents in place. The Family Center Manhattan 66 Reade Street New York, NY 10007 - 212.766.4522 The Family Center Brooklyn 584 Nostrand Avenue Brooklyn, NY 11216 718.230.1379 http://www.thefamilycenter.org/programs/legal.php Gay Men’s Health Crisis The Tisch Building, 119 West 24 Street, New York, NY 10011 212.367.1000 http://www.gmhc.org/programs/legal.html HIV Law Project 15 Maiden Lane, 18th Floor New York, NY 10038 Phone: 212.577.3001 http://www.hivlawproject.org/NEW_SITE/whats_new.html Bronx AIDS Services, Inc. www.basnyc.org 540 East Fordham Road Bronx, NY 10458 Phone: 718.295.5605 Fax: 718.733.3429 New York Council on Adoptable Children (COAC)/AIDS Orphans Program www.coac.org 589 8th Avenue, 15th Floor New York, NY 10018 Phone: 212.475.0222 Queens Legal Services Corp. www.queenslegalservices.org 89-00 Sutphin Blvd. Jamaica, NY 11437 Phone: 718.657.8611 South Brooklyn Legal Services, Corp. B - HIV Project 105 Court Street Brooklyn, NY, 11201 718.237.5546, 718.237.5509, and 718.237.5569
59 Staten Island AIDS Task Force www.aidsinfonyc.org/siatf 25 Hyatt Street Staten Island, NY, 10301 718.981.3366 If you would like more information on health care proxies or to obtain a copy of a health care proxy, feel free to contact the National Alliance for the Mentally Ill at 800-950-3228. Entitlements Medicaid Application Process Your client can apply for Medicaid by writing to, calling, or visiting their local department of Social Services: http://www.health.state.ny.us/health_care/medicaid/ldss.htm We have provided a list of Medicaid offices in the New York City area below. Your client can also complete common Medicaid and Family Health Plus application: http://www.health.state.ny.us/nysdoh/fhplus/application.htm If your client has questions regarding Medicaid call 1-877-472-8411. Documents Needed to Apply Proof of age, like a birth certificate Proof of citizenship or alien status* Recent paycheck stubs (if you are working) Proof of your income from sources like Social Security, Supplemental Security Income (SSI), Veteran's Benefits (VA), retirement Any bank books and insurance policies that you may have Proof of where you live, like a rent receipt or landlord statement Insurance benefit card or the policy (if you have any other health insurance) Medicare Benefit Card *NOTE: Medicaid coverage is available, regardless of alien status, if you are pregnant or require treatment for an emergency medical condition. A doctor must certify that you are pregnant or had an emergency, and you must meet all other eligibility requirements. Documentation checklist: Please see next page for documentation checklist. Checklist can also be accessed at: http://www.health.state.ny.us/nysdoh/fhplus/pdf/4220b.pdf
60 PROOF OF IDENTITY/DATE OF BIRTH AND RESIDENCE: You must show ONE of the documents listed in both categories to see if you are eligible for health insura n c e. Discuss this with the person helping you with your application. Photocopies are acceptable. Drivers license/Official Photo identification Passport* Birth certificate* Baptismal/other religious certificate* Official School records Adoption records Official Hospital/doctor birth records* Naturalization certificate* Marriage records RESIDENCY/HOME ADDRESS (this must match the home address in Section A, and the proof must be dated within 6 months of the application) ID card with address Postmarked envelope, postcard, or magazine label with na me and da t e (cannot use if sent to a P.O. Box) Drivers license issued within past 6 months Utility bill (gas, electric, cable), or correspondence from a government agency which contains name and street address Letter/lease/rent receipt with home address from landlord Property tax records or mortgage statement Paycheck stubs (4 consecutive weeks) Letter from employer on company letterhead, signed and dated Income tax return/W-2** Business records Award letter/certificate Benefit check Correspondence from Social Security Administration Award lettertificate Check stub Statement from bank, credit union or financial institution Letter from broker Letter from agent PROOF OF CURRENT INCOME: You must provide a letter, written statement, or copy of check or stubs, from the employer, person or agency providing the income. Submit all that apply. Provide the most recent proof of income before taxes. The proof must be dated, include the employees name and show gross income for the pay period. Letter from person pro v id i ng support Letter from court Child support/alimony check stub Signed and dated income tax return and all Schedules** on Records of earnings and expenses Award letter Check stub Award letter Benefit check stub Correspondence from Veterans Administration Award letter/certificate Benefit check Correspondence from NYS Dept. of Labor Letter from roomer, boarder, tenant Check stub Statement from pension/annuity Signed statement or letter from family member ** W-2s or income tax returns for other than self-employed may be used for applications prior to April of the following year. If later, you must include another form of documentation. * May also be used to document citizenship or immigration status. Your enrollment cannot be completed until all checked items are received. Please return these items by ___________. If you need help getting any of these items, let us know. Applicant Name__________________________________________________________ Application Date _____________________ IDENTITY/DATE OF BIRTH (not required for recertification) DOCUMENTATION CHECKLIST For Health Insurance Wages and Salary Social Security Military Pay Self-Employment Child Interest/Dividends/Royalties Unemployment Benefits Worker's Income from Rent or Private Pensions/Annuities Veteran's Benefits Support from Other Family Members
61 DOCUMENTATION CHECKLIST For Health Insurance DEPENDENT CARE COSTS: DEPENDENT CARE COSTS: DEPENDENT CARE COSTS: Presumptive Eligibility Screening Worksheet completed by qualified provider Statement from medical professional with expected date of delivery WIC Medical Referral Form Proof of Proof of income for the month(s) in which the expense was incurred Proof of residency/home address for the month(s) in which the expense was incurred For determination of eligibility for medical expenses from the past three months: U.S. Birth Certificate U.S. Baptismal record, recorded within 3 months of birth U.S. Passport Naturalization certificate Official Hospital/doctor birth records Citizenship Bank Statement Life Insurance policy Deed or Appraisal for Real Estate Copies of stocks, bonds, securities Motor Vehicles — Estimate from dealer, “blue book” value Burial Agreement Trust Fund Resources (persons age 19 and over, only if checked by interviewer) DHS form I-551 (Green Card) USCIS form I-94, I-210 letter, I-220B, or I-181 Other USCIS documentationorcorrespondence (I-688B, I-766, I-797) OtherUSCISdocumentation,or correspondence to or from the USCIS, that shows that the alien is PRUCOL; that is, the a lien is living in the U.S. with the know ledge and permission or acquiescence of the USCIS, and the USCIS does not contemplate enforcing the alien’s departure from the U.S. Insurance policy Termination Letter Certificate of Insurance Medicare Card Insurance card Other Written statement from day care center or other child/adult care provider Canceled checks or receipts PREGNANT WOMEN ONLY MEDICAID/CHILD HEALTH PLUS A ONLY FOR MEDICAID, CHILD HEALTH PLUS A AND FAMILY HEALTH PLUS ONLY
62 Medicaid Offices NOTE: Offices are open from 9:00 AM to 5:00 PM, Monday through Friday, except Coney Island, which is also open on Saturdays from 9:00 AM to 12:00 PM. Human Resources Administration 718.557.1399, or 1.877.472.8411 (toll-free within the five boroughs of New York City) Bronx Medical Assistance Program Bronx Lebanon Hospital Medicaid Office 1316 Fulton Avenue (1st Floor) 718.860.4634/4635 Jacobi Hospital Medicaid Office 1400 Pelham Pkwy. (Ambulatory Care Pavilion –1st fl.) 718.822.5435/5432 Lincoln Hospital Medicaid Office 234 East 149th St. (Basement – Room B-75) 718.585.7872/7920 Morrisania Medicaid Office 1225 Gerard Avenue (Basement) 718.960.2799/2752 North Central Bronx Hospital Medicaid Office 3424 Kossuth Avenue (1st Fl. – Room 1A 05) 718.920.1070 Boerum Hill Medicaid Office 35 4th Avenue 718.623.7427/7428 East New York Medicaid Office 2094 Pitkin Avenue (Basement) 718.922.8292/8293 Coney Island Medicaid Office 30-50 West 21st Street 718.333.3000/3001 Woodhull Hospital Medicaid Office 760 Broadway (Ground Floor) 718.630.3397/3398
63 Brooklyn Kings County Hospital Medicaid Office 441 Clarkson Ave. “T” Bldg. Nurses’ Residence (1st Fl.) 718.221.2300/2301 Bellevue Hospital Medicaid Office 466 First Avenue and 27th St. “G” Link (1st Floor) 212.679.7424 Columbia Presbyterian Hospital Medicaid Office 622 West 168th St. (1st Fl.) PH 040 212.342.5102/5103 Gouverneur Hospital Medicaid Office 227 Madison Street (7th Floor) 212.238.7790 Harlem Hospital Medicaid Office 530 Lenox Avenue (Ron Brown Bldg.) – 1st Floor, Rm. 1061 212.939.8504 (Use the 137th. Street Entrance) Manhattan Metropolitan Hospital Medicaid Office 1901 First Avenue (1st Fl. – Room 1D-27) 212.423.7006 Elmhurst Hospital Medicaid Office 79-01 Broadway (Room D4-17) 718.476.5904 Jamaica Medicaid Office 90-75 Sutphin Blvd. (6th Floor) 718.523.5699 Queens Rockaway Medicaid Office 219 Beach 59th. St. (1st. Floor) 718.634.6910 Staten Island Staten Island Medicaid Office 215 Bay Street 718.420.4660/4732Family Health Plus
64 Family Health Plus Application Process To download an application: http://www.health.state.ny.us/nysdoh/fhplus/application.htm To apply for Family Health Plus, you will need to have a personal interview where you will complete an application, provide proof of certain information, and select a health plan. Enrollment facilitators are available near your home or work, to help you apply, ease the enrollment process and answer your questions. Many facilitators are available during weekend and evening hours at locations around the State. Local social services districts can also help you apply. Enrollment facilitators and local social service districts will make an appointment with you to help you complete an application. Click here to find an enrollment facilitator near you: http://www.health.state.ny.us/nysdoh/fhplus/where.htm New York City Family Health Plus Application Centers Affinity Health Plan 866.AHP.5678 Alianza Dominicana 212.740.1960 Bellevue Hospital Medicaid Office 212.679.7424 CenterCare, Inc. 800.545.0571 Children's Aid Society 212.503.6804 Columbia Presbyterian Hospital Medicaid Office 212.342.5102/5103 Community Premier Plus, Inc. 800.867.5885 Fidelis/NYS Catholic Health 888.343.3547 Generations + /Northern Manhattan Health Network 718.579.4900 Bronx or 212.423.7000 New York Gouverneur Hospital Medicaid Office 212.238.7790 Harlem Congregations for Community Improvement, Inc. 212.491.1119
65 Harlem Hospital Medicaid Office 212.939.8505 / 8511 Health First PHSP, Inc. 800.404.8778 English or 800.408.8778 Spanish HealthPlus, Inc. 888.809.8009 HIP 800.HIP.TALK or 800.447.8255 Hispanic Federation 212.233.8955 Medical and Health Research Association of New York City, Inc. 212.748.0400 MetroPlus Health Plan 800.475.METRO or 800.475.6387 Metropolitan Hospital Medicaid Office 212.423.6583/7006 Neighborhood Health Providers/Royal Health Care 800.826.6240 New York City Department of Health 212.788.5500 NewYork-Presbyterian Community Health Plan 800.261.4649 Union Health Center 212.812.3690 United Healthcare of NY, Inc 888.617.8979 WellCare of New York, Inc. 800.288.5441 Documents Needed to Apply Documentation checklist: See page 60 for documentation checklist. The same checklist applies for Medicaid and Family Health Plus.
66 Supplemental Security Income (SSI) Application Process Can apply the day a youth turns 18 – not dependent on parent’s income Clients must apply with the Social Security Administration, the federal agency that administers SSI. Contact local Social Security office to make an appointment; with an appointment, a representative will help client apply for benefits. To find local Social Security office: https://s044a90.ssa.gov/apps6z/FOLO/fo001.jsp Documents Needed to Apply You may not need all of the following documents. Sometimes one document can substitute for another. The lists are not all–inclusive. Social Security representatives will tell you what you need and what other documents are acceptable. Representatives will also help your client get docu- ments if they are having trouble. Social Security card or number Proof of age: A public birth record recorded before age 5; or A religious birth record recorded before age 5; or Other documents showing age or date of birth Citizenship or alien status: Birth certificates showing you were born in the United States; or Religious record of birth or baptism showing your place of birth in the United States; or Naturalization certificate; or U.S. passport; or Certificate of citizenship For aliens: a current immigration document, e.g., I–551 (Permanent Resident Card) or I–94 (Arrival/Departure Record) Proof of Income: Earned Income – payroll stubs, or if self–employed, a tax return for the last tax year Unearned Income – any records you have (for example––award letters, bank statements, court orders, receipts) showing how much you receive, how often, and the source of the payment Work Expenses Proof of Resources: Bank statement(s) for all checking and savings accounts Deed or tax appraisal statement for all property you own besides the house you live in Life or disability insurance policies Burial contracts, plots, etc. Certificates of deposit, stocks, or bonds Car titles or registrations Proof of Living Arrangements: Lease or rent receipt Names, dates of births, medical assistance cards or Social Security numbers for all house hold members Deed or property tax bill Information about household costs, food, utilities, etc. Medical Sources: Medical reports Names, addresses, and telephone numbers of doctors and other providers of medical services and dates treated. Work History: Job titles Type of business Names of employers Dates worked Hours worked per day
67 HASA Application Process To download application: http://www.nyc.gov/html/hra/html/medical_insurance/hasa.shtml Step One: the HASA Service Line is the central intake point for all applications for HASA. The client, either directly or with assistance from a case manager, social worker, medical provider, or other advocate, faxes or mails eligibility documentation to the Service Line. Service Line: 400 Eighth Avenue, New York, New York 10001 Tel: 212.971.0626 Fax: 212.971.0820 Monday – Friday: 9am –5pm Step Two: Service Line will contact medical provider to verify that information is correct. Cases will be prioritized to determine the need for a Case Manager. Immediate Case Managers are assigned to the following: Homeless; or Homebound; or Facing an eviction Step Three: The client will be assigned to a HASA Unit in a HASA Center in any of the boroughs. Clients with children under 18 are assigned to a Family Unit. Homeless clients will be assigned to either an Intensive Housing Service Unit, and/or to an emergency hotel placement, until permanent housing is found. If client is in hotel placement for more than 90 days, s/he is assigned to the Transitional Housing Unit. Step Four: The HASA Case Manager must determine client’s immediate needs and assist client in securing benefits and services. Emergency and Immediate Needs may include the following: Facing eviction No Food in the house No income coming to the family. Documents Needed to Apply Acceptable forms of proof are: M11-Q form signed by a doctor Letter of diagnosis on Dr.’s letterhead ADAP application signed by doctor Referral form sent by hospital Comprehensive Medical Summary from prison
68 HASA Contact Information Elsie del Camp, Deputy Commissioner of HASA, 212.620.4655/44 Coney Island (#63) Site Director: Chilove Kernizan 718.333.3340/1 Brownsville (#73) Site Director: Jennifer Carroll 718.923.5861 Greenwood Center (#85) Site Director: Janice Scott 718.694.8994/5
69 ADAP Application Process To download applications go to: http://www.health.state.ny.us/diseases/aids/forms/adapforms.htm or call ADAP at 1.800.542.2437 to request an application for your client. Same application can be used for ADAP, ADAP plus, and HIV home care. Note: an additional application is required for APIC. If you have questions regarding ADAP, call 800.542.2437 (9am-5pm). Documents Needed to Apply Proof of residency, income, and assets. A Medical Application signed by a licensed medical professional is required, verifying HIV- infection and indicating the applicant's medical status. A treatment plan by a physician must also be submitted for Home Care applicants.
70 Children's Hope Foundation www.childrenshope.org Partnership for Family Health: Northern Manhattan HIV Consortium MHRA, Inc. www.pffh.org
CHF Transitioning Guide

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CHF Transitioning Guide

  • 1. Your HIV+ Youth to TRANSITIONING This publication was supported by grant number H89HA0015M from the United States Health Resources and Services Administration. This grant is funded through TitleI of the Ryan White CARE Act Amendments of 2000, through the New York City Department of Health and Mental Hygiene to the Medical and Health Research Association of New York City, Inc. Its contents are solely the responsibility of the Subcontractor and do not necessarily represent the official views of the funders. HEALTHY ADULTHOOD: Susan Jacob - Children’s Hope Foundation APRIL 2 0 0 7 Saba Jearld MPH - Partnership for Family Health AA GGuuiiddee ffoorr Health Care Providers
  • 2. 1 Transitioning Your HIV+ Youth to Healthy Adulthood: A Guide for Health Care Providers Susan Jacob Children’s Hope Foundation Saba Jearld, MPH Partnership for Family Health April 2007 This publication was supported by grant number H89HA0015M from the United States Health Resources and Services Administration. This grant is funded through Title I of the Ryan White CARE Act Amendments of 2000, through the New York City Department of Health and Mental Hygiene to the Medical and Health Research Association of New York City, Inc. Its contents are solely the responsibility of the Subcontractor and do not necessarily represent the official views of the funders.
  • 3. 22 The Transition Consortium The Transition Consortium was founded by the Children’s Hope Foundation (CHF) and the Partnership for Family Health: Northern Manhattan HIV Consortium (PFFH) following the success of our cosponsored symposium, “Changing Times, Changing Lives: Transitioning HIV+ Adolescents to Adult Services.” Uniting pediatric, adolescent, and adult providers from the New York City area, the Transition Consortium established working groups intended to address issues central to HIV+ adolescents’ successful transition to adult health care services. This booklet and the accompanying poster, “Positive Transition to Adult Health Care,” represent the contributions of the provider working groups, as well as the authors’ consultations with additional health care professionals. Authors: Susan Jacob, Children’s Hope Foundation Saba Jearld, MPH, Partnership for Family Health Transition Consortium Members: Bellevue Hospital Center Albert Einstein College of Medicine Columbia School of Nursing Françios-Xavier Bagnoud Center Harlem Hospital HEAT Program/Kings County Hospital Center HIV Law Project Jersey Shore University Medical Center Legal Aid Society of New York The Mount Sinai Medical Center New York Presbyterian Hospital Brooklyn Pediatric AIDS Network/SUNY Downstate
  • 4. 3 Acknowledgments Special thanks to Bellevue Hospital Center for their invaluable help with this booklet and the Enhancement Project. These projects would not have succeeded without the support of the hospital's Virology Services department. We are grateful to the following individuals at Children’s Hope Foundation and Partnership for Family Health for devoting their time and energy to this project: Elizabeth Bliss, MST Scott Cottenoff, JD, MPH Elizabeth Lee, MPA Emily Nishi, MPA Nancy VanDevanter, DrPH We would like to thank Bruce Beckwith, LCSW and Erika L. Rexhouse, LCSW for contributing content to this booklet. We appreciate the guidance and content provided by the Institute for Community Inclusion's booklet for health care providers: Transition Planning for Adolescents with Special Health Care Needs and Disabilities: A Guide for Health Care Providers. http://www.communityinclusion.org We would like to give special thanks to the University of South Florida’s Pediatric/Adolescent HIV Program— a model transition program for HIV+ adolescents—for providing assessment tools and distributable resource materials. We would also like to thank: Ariel Chernin Jesse Wright Cathy Bowman, HIV Project Director, South Brooklyn Legal Services Tiffany Chenneville, PhD, Director of Behavioral and Psychosocial Services, University of South Florida Pediatric Infectious Disease Program Patricia Gilliam, MEd, MSN, ARNP, BC, University of South Florida, Department of Psychiatry and Behavioral Medicine Finally, we are grateful to those who contributed time to review this booklet.
  • 5. 4 Table of Contents How To Use This Booklet Chapter 1: Introduction I. What is Transition? II. Barriers to Successful Healthcare Transition III. Benefits of Transition IV. Preparing for “Letting Go” Chapter 2: Transition: Self-Advocacy and Self-Care I. Background Information II. Disclosure III. Adherence IV. Provider Tool: Self-Advocacy and Self-Care Skills V. Taking Charge of Your Health Care: A Handout for Young Adults Chapter 3: Transition: Sexuality I. Background Information II. Provider Tool: Sexual Health and Transmission Quiz Chapter 4: Transition: Employment I. Background Information II. Steps for Transitioning Your Youth to the Workforce III. Workshop Topics Chapter 5: Transition: Social Network I. Background Information II. Life Skills Workshop Topics Chapter 6: Transition: Permanency Planning I. Background Information II. Legal Issues III. Tips for Providers: Helping with Permanency Planning IV. Helping Adolescents Deal with Grief V. Activity for Parents Chapter 7: Transition: Entitlements I. Background Information II. Entitlements: i. Medicaid ii. Family Health Plus iii. Supplemental Security Income (SSI) iv. AIDS Drug Assistance Program (ADAP) v. HIV/AIDS Services Administration (HASA) Additional Resources: Transition Tools Adherence Tool Self-Advocacy and Self-Care Employment Permanency Planning Entitlements 6 8 8 9 9 11 12 12 13 13 15 17 18 18 19 20 20 21 22 24 24 24 26 26 26 28 28 30 32 32 33 33 34 35 35 36 42 42 47 51 54 58 59
  • 6. Transitioning Your HIV+ Youth to Healthy Adulthood: A Guide for Health Care Providers 5
  • 7. 6 How To Use This Booklet Information published in this booklet is considered to be true and correct at the date of publication. Changes in circumstances after the time of publication may impact on the accuracy of the information. We have no control at all over the information on linked sites. This booklet is primarily intended for providers working with perinatally- infected HIV+ adolescents and young adults; however, much of the information will be relevant to behaviorally-infected youth, as well. We have identified six areas relevant to transitioning HIV+ adolescents and young adults to adult care settings: 1.Self-advocacy and self-care 2.Sexuality
  • 8. 3.Employment 4.Social network 5.Permanency planning 6.Entitlements For each topic, we discuss key issues and provide tools to facilitate the transition process. In addition, we have included supplementary resources at the end of the booklet that may assist providers, clients, and families. Finally, please review the poster, “Positive Transition to Adult Health Care,” which is an illustrative example of the following content. 7
  • 9. 8 Chapter 1: Introduction At the beginning of the HIV/AIDS epidemic, most HIV+ children were not expected to survive; however, due to the development of antiretroviral therapies many HIV+ children have grown into active adolescents and young adults. Perinatally-infected adolescents and young adults often receive care from the same provider or in the same setting for years. Adolescents and their caregivers come to know, trust, and rely on their health care providers. In addition, young people, their caregivers, and providers frequently develop a connection that transcends the typical health care relationship and represents more of a familial bond. Despite the strong ties between HIV+ adolescents and their health care providers, funding requirements and hospital regulations prohibit many pediatric health professionals from retaining older clients. Moreover, it is a natural progression within the development continuum for HIV+ adolescents to take responsibility for their disease management and general wellbeing. Unfortunately, many barriers often stand in the way of transitioning HIV+ adolescents and young adults to adult care. I. What is Transition? Transition is a multifaceted, active process that attends to the medical, psychological, and educational or vocational needs of adolescents as they move from the child-focused to the adult-focused health-care system. (Reiss, J, Gibson, R. Healthy care transition: destinations unknown. Pediatrics. 2002; 110:1307-1314)
  • 10. 9 II. Barriers to Successful Health Care Transition Barriers to Transition – Providers - Difficulty identifying adult primary care providers - Adolescent resistance - Family resistance - Lack of institutional support - Time for planning - Resources - Personnel Barriers to Transition – Youth/Family - Little family awareness and knowledge of health care transition - Lack of preparation for health care transition - Adult-oriented medical providers’ lack of knowledge of childhood-onset chronic conditions - Transition often prompted by age or behavior rather than readiness - Differences in child and adult medicine Despite these barriers, transition into an adult health care setting is inevitable, and the pediatric provider plays a crucial role in preparing young adults and their caregivers for this important milestone. The transition process should begin in pre-adolescence and requires providers, caregivers, and clients to work together to develop a transition timeline, establish new boundaries, and implement the eventual transition to adult services. Empowering youth and fostering their independence are essential to the transition process. These are the best ways to ensure that pediatric patients successfully transition to adult care and possess the tools they need to move toward healthy adulthood. III. Benefits of Transition Psychosocial Benefits for Youth - Promotes social and emotional development - Promotes positive self-concept and sense of competence - Supports positive self-image and self-reliance - Promotes independent living - Supports long-term planning and life goals - Broadens system of interpersonal and social supports Benefits to Providers & Pediatric Facilities - Maintains practice within area of training and interest - Preserves organization’s mission and focus - Allows room for new patients
  • 11. 10
  • 12. 11 Specific steps for providers: Encourage youth to cosign and become involved in the health care process Define transition expectations in early teen years Provide a transition plan of care Focus on health promotion, prevention of secondary disabilities, and prevention of self-destructive behavior Start to address adult insurance coverage Look for sources of adult health care and provide strategies for selecting an adult health care provider: Encourage family to visit and ‘interview’ physician and staff Transition primary care before specialty care Work with adult health care providers Let your teen advocate for him/herself IV. Preparing for “Letting Go” Transition is more than a process. It takes all of us to make the journey as smooth as possible… Think and talk with youth and family in five-year-into-the-future segments Teach/re-teach about health conditions at appropriate cognitive levels Involve youth (and family) in decision-making (‘assent to consent’) Ask about and support ‘grown-up’ plans Ask youth how to help make their dreams a reality Have faith in your teen Support your teen Allow your teen to advocate for him/herself Be open and honest about your concerns—it's important to express how you feel without being critical or judgmental Allow your teen to be involved in the different processes, such as obtaining entitlements Only offer your advice if you see there's a problem Do not assume trouble is around the corner, and if it is your teen will not be able see it Let your teen advocate for him/herself
  • 13. 12 Chapter 2: Transition: Self-Advocacy and Self-Care 8 -12 years old 13 – 16 years old 17 – 19 years old 20 -24 years old Self-Advocacy and Self-Care Timeline I. Background Information As adolescents approach young adulthood, transition to an adult health care setting is inevitable. Encouraging a young person to transition supports long-term goals and healthy development. However, preparing a young person for self-advocacy and self-care must begin well before late adolescence in order to lay groundwork for what is often a complicated and uncertain step. HIV+ Adolescents face tremendous challenges as they mature to adulthood, including: Balancing complicated care: - Multiple medications and appointments - Variety and range of providers Familiar care network: - Dependence on caregivers and providers to manage disease - Reluctance to leave a supportive care network - Awareness of the benefits of the pediatric setting and the potential challenges associated with moving to an - Unfamiliar adult setting Psychosocial development issues: - Coping with typical worries of adolescence, including relationships, employment, and education - Developing and exploring own identity separate from, and in relation to, family and friends - Struggling with disclosure of disease status to peers - Asserting a sense of independence from authority figures through, for example, non-adherence to treatment regimen The following is a suggested timeline for discussing topics related to self-advocacy and self-care. - Encourage caregivers to disclose to child - Solicit direct conversation with adolescent - Increase private meetings with adolescent - Begin to explain medications - Deal with early adherence issues - Link to support groups and/or counseling - Assist adolescent with a calendar for appointments and prescriptions - Ensure adolescent understands diagnosis, needed medications, health precautions - Connect to teen-based adherence program - Enforce responsibility in making and keeping appointments - Provide copies of medical records and forms of identification - Review medical history - Promote questions about care regimen and possibilities for future changes in regimen - Provide youth with substantial medical and entitlements history - Help identify appropriate adult providers through visits to new clinics - Transfer medical records to new provider, highlight key issues
  • 14. 13 - List ‘testing the water’ questions your teen can ask friends in order to gauge their opinion of HIV/AIDS and people living with HIV - Ask your teen to create a “pros” and “cons” list for telling a friend about their HIV status - Create guidelines and criteria for identifying safe and unsafe people to disclose to - Role play: ask your teen to imagine how they would tell a friend about their HIV status - Discuss the various reactions—positive or negative—friends may have and ways to cope with those reactions - Create disclosure scripts for different people, e.g., providers, peers, family members, significant others, etc. II. Disclosure Disclosing a child’s HIV status is a crucial turning point in managing the disease. It is often hard to keep a child adherent to antiretroviral treatment when they are unaware of the reason they are taking medicine. Supporting a family with disclosing to an uncooperative child early on in their development may bolster adherence. For adolescents, disclosure of their HIV status to peers is often a daunting task. Adolescents do not want to be rejected by their peers; however, relieving the burden of secrecy often increases their sense of social support. In addition, adolescents must become competent and comfortable with talking about their disease and associated issues with future adult providers. III. Adherence As adolescents mature, they must assume greater responsibility for administering their own medications; however, their desire to belong and fit in may conflict with the need to take numerous medicines at various times throughout the day. As adolescents assert their need for independence and seek to define their identity, this can often wreak havoc on adherence to antiretroviral therapies. It is crucial to address adherence issues in adolescence, as poor adherence as a teen can lead to poor adherence as an adult. (See the Additional Resources section at the end of the booklet for the Adherence Tool.) Here are some strategies to facilitate adolescents’ disclosure to peers and providers:
  • 15. 14 Medication adherence is affected by a variety of factors. Clients may maintain adherence to HIV medication for a stretch of time and then become non- adherent because of life stresses, disinterest in medication, etc. Movement along a continuum of medication adherence is common. Staging your client and his/her readiness to regularly take HIV medication allows you to assess their location on the continuum and to respond with support. To briefly relate the Stages of Change Theory (Prochaska and DiClemente, 1992), a client’s interest in regularly taking HIV medications may range from resistance to commitment. This fluctuating motivation is often referred to as stages of change. The 5 stages are: Medication adherence is affected by a variety of factors Precontemplation Contemplation Preparation Action Maintenance 1 2 3 4 5
  • 16. 15 Use the following questions to identify your client’s current stage: Have you been taking medications regularly for more than 6 months? Yes (Maintenance Stage) No (go to next question) Are you in the process of trying to take medication regularly? Yes (Action) No (go to next question) In the next 30 days, are you going to consider taking medication regularly? Yes (Preparation Stage) No (go to next question) In the next 6 months, are you going to consider taking medication regularly? Yes (Contemplation Stage) No (Precontemplation Stage) There are a variety of activities you can use to help move your client toward the final stage, ‘maintenance.’ The Adherence Tool, located in the Additional Resources section of the booklet, will help promote regular adherence to medication. Suggestions for improving adherence among HIV+ adolescents: IV. Provider Tool: Self-Advocacy and Self-Care Skills The following tool can be used to identify when you should discuss certain self- advocacy and self-care skills with adolescents and their families. - Investigate the option of fewer pills or combination regimens - Arrange early morning and late evening dosing time to avoid conflict with a school or work schedule - Arrange confidential pharmacy delivery of antiretroviral medicines or clinic pick-up - Provide adherence tools such as pillboxes and adherence calendars, and provide incentives for 95% or above adherence
  • 17. 16 Name: DOB: MR# < 11 years of age 11 to 14 years of age 15 to 24 years of age Date Initiated: Date Disclosure: Discussed Achieved Discussed Achieved Discussed Achieved Knowledge of Health Condition and Management Child interacts directly with health care team, asks questions. Assess child's knowledge and perception of diagnosis. Build on their understanding. Assess adolescent/family's readiness and assist with disclosure. Able to answer "What is HIV?" Able to answer "What are T cells?" Able to answer "What is a viral load?" Verbalizes names and dosages of medications. Verbalizes rules for taking medications (with food, etc). Able to fill prescriptions and obtain refills. Verbalizes known possible side effects of medications. Takes medications independently. Able to independently make appointments. Able to independently give history. Verbalizes when and how to call the doctor. Verbalizes when and how to access urgent/emergent care. Able to set up transportation for appointments. Keeps calendar of appointments. Able to identify members of the health care team, roles and how to contact. Adolescent Engages in Preventative Health Behaviors Visiting dentist every 6 months. Current with immunizations and health screenings. Engages in preventative behaviors (exercise, nutrition, TSE, BSE, etc). Abstains from using alcohol, drugs, cigarettes and/or aware of risk reduction behaviors. Adolescent Demonstrates Knowledge of Responsible Sexual Activity Identifies high risk situations for exploitation and victimization. Knowledge of contraception options, STD, STD prevention Understands implications of diagnosis on pregnancy. Adolescents Demonstrates Knowledge of Health Insurance Concerns and Issues Identifies when eligibility terminates for health insurance. Verbalizes type of insurance, limits of coverage, how to contact. Knowledge of AIDS Insurance Continuation Program. Adolescent Demonstrates Knowledge of Community Resources Case Management - THAP, etc Support Groups ADAP: AIDS Drug Assistance Program White areas are suggested ages to address individual skills but plans would be individualized based on development, social situation & time of entrance into program. Please date and initial discussion/achievement boxes.
  • 18. 17 V. Taking Charge of Your Health Care: A Handout for Young Adults The following handout can be used to prompt older adolescents to think about the information they will need to know in an adult care setting.Recently transitioned young adults can use the handout as a reminder of the issues they need to address with their current provider. Transition Health Care Taking Charge of Your Health Care: A handout for adolescents and young adults With special health care needs Be your own health care advocate Learn about your condition. Know the warning signs that mean you need emergency help. Know who to call in case of an emergency. Carry that information with you. Learn how to make your own appointments. Write down any questions you have before you go to the doctor’s office. Meet privately with your health care providers. Speak up and ask your health care provider questions. If you don’t understand an answer, ask again. Talk to your doctor about difficult topics such as relationships, drugs, and birth control. Ask for copies of medical tests or reports. Carry your insurance card and other health care information that you think is important. Take charge of your health care information Be sure to understand the medications that you are taking. What are their names and when do you take them? Know how to call your pharmacy and how to fill your prescriptions. Make sure you know your insurance and how to get a referral. Keep a list of addresses and telephone numbers of all your health care providers and community resources. Keep a notebook of medications, medical history and results of medical tests. Ask health care provider for a short written summary of your health condition. Know how to order and take care of any special supplies you use. Plan for transfer to an adult health care provider Talk to your doctor and know how and when you should start seeing an adult doctor. Discuss with provider resources that might be helpful to you. Meet and talk with the new health care provider before you switch. Adapted with permission from materials produced by the Institute for Community Inclusion at Children’s Hospital, Boston, as part of the Massachusetts Initiative for Youth with Disabilities, a project of the Massachusetts Department of Public Health. Supported in part by project #HO1MC00006 from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services: www.communityinclusion.org/transition/providerguide.html.
  • 19. 18 Chapter 3: Transition: Sexuality I. Background Information Adolescence is a time of exploration and growth, and this growth also includes sexual maturation and increased sexual desire. General sexual health and sexuality information is appropriate for HIV+ adolescents and young adults; however, there are specific aspects of sexual health information that HIV+ adolescents and young adults must be aware of to protect themselves and their potential sexual partners. Some issues facing HIV+ adolescents and young adults regarding sexuality include: - Delayed growth and sexual maturation due to their HIV+ status - Discomfort with their bodies due to medication side-effects (e.g., lipodystrophy) - Inability to find a person with whom they are comfortable talking about sex and sexuality - Discomfort disclosing their HIV status to peers and/or romantic partners. - Pressure from peers and/or romantic partners to engage in sexual behavior Some issues facing providers and families grappling with their HIV+ adolescent’s sexuality: Providers - Discomfort with discussing sex and sexuality with their long-time pediatric patient - Inability to view their maturing patient as a sexual being Family - Unwillingness to discuss sex and sexuality - Morals and values that do not condone sexual behavior before marriage - Concerns that talking about sex and sexuality may appear to promote sex
  • 20. 19 8 – 12 years old 13 – 16 years old 17 – 19 years old 20 – 24 years old - Facilitate questions - Assess ‘sexual knowledge’ base - Link to adolescent friendly gynecologist - Begin to review sexuality issues and safe sex practices - Continue sexuality conversation - Encourage questions about HIV+ sexuality and pregnancy - Refer for regular sexual health checkups - Disclosure of HIV status to potential sexual partner(s) Sexuality Timeline II. Provider Tool: Sexual Health and Transmission Quiz T F Don’t know HIV can be spread through oral, anal, or vaginal sex HIV can not be spread by sharing needles for drugs, tattoos, or body piercing A person with HIV should not donate blood HIV can be spread by kissing, hugging, sharing drinking glasses, toilet seats, or eat- ing utensils HIV can be spread through coughing or sneezing A mother can give HIV to her baby during pregnancy, childbirth, or breastfeeding Birth control pills and Depo shots prevent the spread of HIV and other STDs Latex condoms are 100% effective in preventing the spread of HIV and other STDs A woman with HIV can not give it to her male partner It is important to use only a water-based lubricant with latex condoms A person with HIV can go to jail if he/she has unprotected sex with someone who does not know his/her diagnosis A woman with HIV is more at risk for other STDs (gonorrhea, syphilis, herpes, chlamydia) The best way to prevent the spread of HIV and other STDs is to not have sex Timeline The following is a suggested timeline for discussing topics related to sexuality.
  • 21. 20 Chapter 4: Transition: Employment Ways to help young adults: - Provide encouragement, guidance, support and information resources concerning employment - Long term planning needs to begin early to ensure that students take the courses and acquire the skills they need to reach their goals - The encouragement providers and families give is most effective when it begins at an early age Benefits of employment: - Employment while the student is still in school can provide a chance to learn first-hand about the work world and develop important job-related skills - Early job experiences provide opportunities to develop new relationships with peers and adults, and the ability to form work relationships is critical for adult life *Please see the Additional Resources section at the end of the booklet for information regarding Employment Certificates and a list of employment agencies serving young adults. I. Background Information Many young adults are employed. Some work in full-time jobs, some in temporary jobs and some in seasonal jobs. The option of employment is a viable one and needs to be talked about as such. Early work experiences lay the foundation for the development of life-long skills. Transitional planning should identify goals and objectives based on the youth’s choices, strengths, likes, and personal vision statement.
  • 22. 21 3. Discuss how to look for a job: - Ask Around - Ask friends, family, youth workers, business owners, etc. if they know of any job openings - A lot of jobs are never advertised and are filled by word-of-mouth - Newspaper ads - Newspapers are always available at public libraries - Volunteer work - Volunteering is an excellent way to acquire the skills, experience and contacts that facilitate finding a job - Provide teens with job resources (see Resources section at end of booklet) - College and university career centers - Internet search 4. Encourage your teen to create a resume. They can be referred to agencies that assist with resume writing (See Additional Resources section at end of booklet). 5. Help teens fill out applications if they need assistance. Working alone Working with people Working with a team Working inside Working outside Working supervision Having freedom Moving around Sitting/standing still Using tools Using numbers Handling money Helping people Solving problems Being accurate II. Steps for Transitioning Your Youth to the Workforce How to help your youth transition and prepare for work: 1. Explain to your teen why it is important to have a job. 2. Discuss different possible work environments and ask your adolescent to fill out the checklist to indicate their preferences.
  • 23. 22 III. Workshop topics If you have a teen support group, you may consider having series of employment workshops. A few workshop ideas: Money Management: - What money means - Deciding what is important to spend money on - Developing a savings plan - Taxes - Payroll taxes - Income taxes - How to open a checking account and maintain it - Learning about credit - Pros and cons of cashing a paycheck - Cash vs. credit cards - Paying bills on time - Different ways of paying bills - Experiment in budgeting - Handling telephone offers Communication: - Communication charades: focusing on tone of voice and facial expressions to relay messages to one another - Communication for an interview - Communication on the job - Learning to negotiate - Managing conflict through healthy communication Work and Study Skills: - Learning about careers through newspapers and job fairs - Working on a career plan to identify goals - Using the library - Learning styles College and GED Programs: - What to look for in a college - How to apply for college - How to write a college essay - How to pay for college - How to obtain a high school transcript - How to find a local GED Program - Requirements for enrolling in a GED Program Employment: - Why work? - Looking for a job - Job applications - Keeping an employment file - Writing a resume - Mock interviews - Questions about the job - What to do after the interview - Understanding your paycheck - Employee benefits - Handling problems on the job - Leaving the job
  • 25. 24 II. Life Skills Workshop Topics If you have a teen support group, you may consider having series of life skills workshop. A few workshop ideas: Daily Living Skills: - Grocery Shopping - Making a list - Meal planning - Comparison shopping of food and supplies - Hands-on practice preparing meals - Cooking with a recipe - Table manners when out for dinner - Tipping appropriately when out for dinner Home Cleaning: - Why we need to clean - Cleaning supplies - Minimizing clutter - How to do laundry - How to find a local Laundromat Chapter 5: Transition: Social Network I. Background Information It is important for all adolescents to feel connected to friends, family, and their community. As a provider, you can encourage your client to participate in activities and programs that promote the development and maintenance of strong social ties. The following is a suggested timeline for discussing topics related to social networks. Social Network Timeline 8 – 12 years old 13 – 16 years old 17 – 19 years old 20 – 24 years old - Connect to social events, summer camps, and support groups - Pair youth with older mentor - Promote after-school activities - Ensure support network - Sustain health relationships - Support mentorship of a younger HIV+ adolescent
  • 26. 25 Home Safety and Repairs: - Maintaining smoke detectors and knowing how to get out of the building in an emergency - Obtaining renter’s insurance Transportation: - How to use the trains and buses - Learning to estimate how long it will take to get from one place to the next - How to get a driver’s license - Cost of car ownership with insurance Community Resources: - Keeping track of important documents Social Development: - Identifying adolescent’s strengths and their goals for the coming months and years - Create collages of picture and words that represent them - Dealing with discrimination Relationships: - Eco-Maps representing the adolescent’s relationships - Characteristics of healthy relationships - Maintaining a personal support system - Contributing to the community - Getting involved in hobbies and sports during leisure time Self Care: - Proper hygiene Health: - Exercise - Nutrition Housing: - How to find housing - What you need in a living arrangement. (being close to a subway, one bedroom, pets allowed, etc.) - Pros and cons of living with a roommates - Housing expenses - Having a back up plan should housing fall through - Penalties of late rental payment - Completing a lease application - Planning for the move and estimating initial costs of moving in
  • 27. 26 Chapter 6: Transition: Permanency Planning II. Legal Issues This section covers: - Legal options for parents - How are children involved in the process? - Difference between health care proxy and advance directive - What clients should discuss before meeting with an attorney Note: It is recommended that clients contact legal agencies and/or a lawyer to assist them with the preparation of legal documents such as wills, health care proxies, etc. (See Additional Resources section at end of booklet.) Legal options for parents: 1. Standby Guardianship: Parents can choose someone who "stands by" until needed to care for the children. There are two ways to name a standby guardian: Court-appointed: A parent goes to court and names a person selected to be the standby guardian. Written designation: A parent can name a standby guardian in writing and not go to court. 2. Legal Guardianship: In a guardianship, there is a change of parental responsibilities once the proposed guardian is approved by the court. Guardians can apply for public assistance for the child, regardless of whether or not they themselves qualify for public assistance. 3. Will: The parent designates in writing who should care for his or her children.The chosen person has no legal authority based on the will alone and must go to court following the parent’s death in order to become a child’s legal guardian. Wishes about how belongings will be distributed and about burial and memorial services can also be stated in a will. I. Background Information Permanency planning involves parents developing a viable custody plan for their children in case they are not able to care for them. The plan takes into consideration the needs of the children, the appropriateness of the caregiver, legal considerations, and parents' wishes. Parents may want you to assist them with talking to their children about permanency planning. One of the ways to help youth is to make them part of the process and to ensure that they have tangible items with which to remember their parents. In this section, we address legal issues related to permanency planning, tips for providers, and helping adolescents deal with grief.
  • 28. 27 4. Adoption: A parent permanently transfers parental rights and responsibilities for the children to the adoptive parent(s). The adoptive parent(s) have full parental rights and responsibilities for the children. 5. Power of Attorney: A parent can give authority to another person to act on his or her behalf should the parent become unable to do so. How are children involved in the planning process? 1. When the parent or guardian goes to court to have the guardian appointed, the child may be appointed an attorney to represent his/her best interests. This attorney is called a “law guardian.” 2. The law guardian should meet with the child and, if the child is old enough, should ask the child if he/she agrees with the parent’s choice of guardian. 3. Some law guardians may decide that the parent’s HIV status should be disclosed to the child, even if the parent or guardian does not want it to be. If this happens, the parent/guardian should consult a lawyer. 4. Children 14 years and older have the right to say with whom they want to live; therefore, they must express their preference in writing through their law guardian and/or through testimony in court. Difference between health care proxy and advance directive What is a health care proxy? A health care proxy is a legal document that a person fills out, signs, and has witnessed by two other people. This document appoints someone of the person’s choice to make health care decisions for him or her if he/she is unable to make the decisions. A proxy is a person who has been given authority to act as an agent for another person. On the proxy form, there are sever- al blank lines where a person can make specific wishes known. All hospitals, doc- tors, and other health care facilities are legally bound to honor the decisions stated in the health care proxy. What is an advance directive? Advance directives are documents signed by a competent person giving direction to health care providers about treatment choices in certain circumstances.There are two types of advance directives. A durable power of attorney for health care ("durable power") allows you to name a "patient advocate" to act for you and carry out your wishes. A living will allows you to state your wishes in writing but does not name a patient advocate.
  • 29. 28 What should a client discuss before meeting with an attorney? 1. Have the client list the people they trust most. 2. Has the client discussed the possibility of naming specific friends or family members as a health care proxy? a. Who is most practical to name? Someone who lives far away is probably not a practical choice. 3. Does the client want to name an alternative in case the first choice does not accept or cannot accept responsibility? 4. Has the client discussed his/her wishes regarding life support with the healthcare proxy? If there is a living will, the health care proxy must follow the client’s wishes. III. Tips for Providers: Helping with Permanency Planning IV. Helping Adolescents Deal with Grief Permanency planning is often a difficult topic for providers to discuss because it involves planning for the child’s future without their parent. Here are some ways you can help your adolescents deal with grief: It is important to remember that adolescence is a particularly difficult time in an individual’s development. Body changes and issues of identity are causes of confusion and stress. The death of a parent can throw the mind of even a well-adjusted teenager into great turmoil. Grief is often new to teenagers. With no previous experience to recall, they will look to influential adults to set the tone for what is appropriate. Before you can provide adequate help to a grieving adolescent, you need to check in with your Acknowledge that it may be painful to think about what will happen in the event that we become ill or pass away, but making plans can be empowering and provide a sense of peace. Reassure clients no decisions or actions may be necessary unless it is an emergency situation. Engage clients in a therapeutic process and explore their reasons for feeling anxious or afraid. Help assess the viability of the plan. Will it work? What might keep it from working? Explain the role of an attorney. Make sure that the client knows that everything they tell an attorney is kept confidential even from you unless the client has given the attorney permission to talk to you. Help clients make a list of questions to ask their attorney.
  • 30. 29 with your own feelings. Think of a flight attendant’s instructions on a plane: “Place the oxygen mask over you own nose and mouth before assisting the person next to you.” Be honest and direct; children can always tell when you are “beating around the bush.” Share your feelings as a way of encouraging them to express theirs. If they are having a difficult time attaching to any specific emotions, try sharing a list of typical thoughts and feelings that people experience at a time of loss, such as anger, sadness, fear, loneliness, shame (often associated with a death due to AIDS), and survivors’ guilt. It is normal, when mourning, for people to become sullen and to isolate themselves from others. If, however, depression becomes chronic, professional assistance in the form of counseling, psychotherapy, or a peer support group should be sought. Help identify available supports. The danger is when prolonged under-expressed grief manifests itself in “at risk” behaviors, such as drug and alcohol use and acting out sexually. Additional symptoms to be aware of include restlessness, sleeplessness and/or lethargy, decreased appetite, reduced academic performance, and a sudden change in the adolescent’s circle of friends. An expressed desire to “sleep for a long time” or “join the deceased” should be viewed as a serious threat of suicide. There are many ways to show adolescents that you respect their grief. Ask them how they want to memorialize the deceased. Encourage them to create a personal memorial using a photograph and some meaningful objects. Another option is to plant a tree or bush. If the deceased has been cremated, a plant can be a perfect resting place for the ashes because it beautifully illustrates the cycle of life and provides mourners with a living, growing thing on which to focus their feelings. Teenagers can also create a memory book using photographs, letters, cards, and anything else that reminds them of the person who has died. If the teen keeps a journal or likes to write, suggest they try writing letters to the deceased. This is an excellent way to remain connected to the departed spirit. The year following a death is generally the hardest because of all the “firsts” to contend with—the first birthday without their loved one, the first holiday season, the first anniversary of the death, etc. These dates can be viewed as occasions to honor the deceased’s life. If the person being grieved enjoyed the ocean, take the day off and have everyone share a picnic at a favorite beach. Maybe it was an art exhibit or a sport the child shared with the deceased; in this case, make a trip to the museum, a ball game or plan a special bike trip. This serves two purposes as it celebrates the deceased’s life and shows the teenager what they gained as a result of the knowing the departed—an important component in helping children cope with death. To summarize: - Teenagers must have their feelings heard and respected - If they are having a difficult time expressing themselves, help them explore their grief - Encourage ceremonies and other symbolic gestures to memorialize the deceased - Pay attention to important anniversaries - Be on the lookout for hostile and self-destructive behavior
  • 31. 30 Activity for parents: Parents can create a memory package that will help their loved ones adjust to the loss later on. Using a container that bares some significance, such as a pocketbook or cosmetic bag, the package should include items that will help the child recall their relationship with their parent. Things to consider are past mother’s or father’s day cards, birthday cards, pictures and crafts that were made at school or camp, photographs, especially ones of the parent and child, and baby items, like shoes or rattles. Any item that holds special importance can be included. A nice touch is to attach a card or letter with a personal message to the child. Parents can use this opportunity to impart important life lessons and values to the child.
  • 33. 32 Chapter 7: Transition: Entitlements Transition Tips: Benefits and Entitlements 1.Include your adolescent in the entitlement process from an early age. 2.Explain the various entitlements and the application processes. 3.Provide your adolescent with a notebook and folder for important documents, including their benefit rights. 4.Instruct your adolescent to use the notebook to keep track of appointment dates, names of all agency contacts, and what was discussed. 5.Discuss the importance of meeting deadlines. Explain the consequences of failing to meet deadlines. 6.It is important to encourage clients to fill out their own paperwork, make their own phone calls, and self-advocate—these are ways to help them transition. I. Background Information Dealing with benefits issues is often overwhelming. For people living with HIV, the processes to obtain benefits can be very confusing. Benefits programs change so often that even benefits counselors and policy advocates have a hard time keeping up! The entitlement process is further complicated by the fact that the system changes when adolescents turns 18. Adolescents become eligible for different entitlements, and the often complex application processes may discourage youth from seeking out appropriate benefits. Entitlements are often handled in “crisis mode,” when the youth is at risk of becoming homeless, or in other emergencies. It can be very frustrating to see your client getting the “run around” when they are trying to obtain entitlements. As a long-time advocate, you may want to handle everything for them. Unfortunately, this hurts your youth more than it helps because you are not always going to be there. If you start preparing your adolescent early, this will help them learn to navigate the difficult world of entitlements on their own. By encouraging your adolescent to advocate for themselves, it empowers them and prepares them for the future. This section provides information on how to help your teenager navigate state and city agencies. Detailed information on application processes is included in the Resources section of the booklet.
  • 34. 33 II. Entitlements This section covers the following entitlements: Medicaid, Family Health Plus, Social Security Income (SSI), AIDS Drug Assistance Program (ADAP), and HIV/AIDS Services Administration (HASA). For each entitlement, you will find the following information: Introduction Services provided Eligibility In addition, we have provided a special section on advocating HASA. *Detailed information on application processes, the documents needed to apply, and contact infor- mation is provided in the Additional Resources section of the booklet. i. Medicaid Introduction: What is Medicaid? Medicaid is a federally-funded, state-run program that provides medical assis- tance for individuals and families with limited incomes and resources. Visit http://www.health.state.ny.us/health_care/medicaid/ for more information. Services Provided: Doctor and dentist services Clinic and hospital services Nursing home and home health care Family planning services Prenatal care Pediatric care Mental health care Prescription drug coverage Optometrist services and eyeglasses Eligibility Can qualify if one or more of the following statements are true: Have children and a limited income. Receive or are eligible for Supplemental Security Income (SSI). Pregnant woman who meets income requirements. Family’s assets are less than $2,000. Receive adoption assistance or foster care assistance.
  • 35. 34 ii. Family Health Plus Introduction: What is Family Health Plus? Family Health Plus is a public health insurance program for adults between the ages of 19 and 64 who do not have health insurance — either on their own or through their employers — but have incomes too high to qualify for Medicaid. Services Provided Health care in the Family Health Plus program is provided through managed care plans.You must select a participating health plan when you apply for Family Health Plus. When you choose a health plan, you will have a regular doctor, get regular check-ups and see specialists if needed. Some plans also offer dental care. Coverage includes: Physician services Inpatient and outpatient hospital care Prescription drugs and smoking cessation products Lab tests and x-rays Vision, speech and hearing services Rehabilitative services (some limits apply) Durable medical equipment Emergency room and emergency ambulance services Behavioral health and chemical dependence services (which includes drug, alcohol and mental health treatment - some limits apply) Diabetic supplies and equipment Hospice care Radiation therapy, chemotherapy and hemodialysis Dental services (if offered by the health plan) Eligibility Family Health Plus is available to single adults, couples without children, and parents with limited income, who are between the ages of 19 and 64, are residents of New York State and United States citizens or fall under one of many immigration categories. If client has health insurance—either on their own or through their employer, or is eligible for employer-sponsored health coverage through a federal, state, county, municipal or school district benefit plan—they are not eligible to enroll.
  • 36. 35 iii. Supplemental Security Income (SSI) Introduction: What is SSI? Supplemental Security Income (SSI) is federal program for people who are disabled and unable to work full-time. If clients qualify, they will be sent a check every month. Clients cannot apply for these benefits through HASA caseworker or at public assistance. Visit http://www.ssa.gov/notices/supplemental-security-income/ for more information. Services Provided: Monthly cash benefit Eligibility: Aged (age 65 or older) Blind; or Disabled And: Has limited income and resources; and Is a U.S. citizen or a non-citizen who meets the alien eligibility iv. AIDS Drug Assistance Program (ADAP) Introduction: What is ADAP? The New York State Department of Health's AIDS Institute has established four programs which provide access to free health care (HIV Drugs, Primary Care, Home Care, and APIC) for New York State residents with HIV infection who are uninsured or underinsured. The four programs use the same application forms and enrollment process. Visit http://www.health.state.ny.us/diseases/aids/resources/adap/index.htm for more information. Services Provided 1. AIDS Drug Assistance Program (ADAP) The AIDS Drug Assistance Program (ADAP) provides free medications for the treatment of HIV/AIDS and opportunistic infections. The drugs provided through ADAP can help people with HIV/AIDS to live longer and treat the symptoms of HIV infection. ADAP can help people with partial insurance or who have a Medicaid spend down requirement. 2. ADAP Plus (Primary Care) ADAP Plus (Primary Care) provides free primary care services at selected clinics, hospital outpatient departments, office based physicians and lab vendors. The services include ambulatory care for medical evaluation, early intervention, and ongoing treatment.
  • 37. 36 3. HIV Home Care Program The HIV Home Care Program provides coverage for home care services to chronically medically dependent individuals as ordered by their physician. The program covers skilled nursing, home health aide services, intravenous therapy administration, medications and supplies and durable medical equipment when ordered by a doctor for specific conditions. Services must be provided through a home care agency which has enrolled in the program. 4. ADAP Plus Insurance Continuation Program (APIC) APIC can pay for commercial health insurance premiums for ADAP eligible clients. APIC will pay for the continuation of a policy for people presenting to the program who: have existing coverage purchased directly from an insurance company or agent, coverage through their employer where the employee contribution for the coverage creates a financial hardship or COBRA coverage when a person loses their job and cannot afford the premiums. Eligibility Residency: New York State (U.S. citizenship is not required, undocumented persons can apply) Medical: ADAP, ADAP Plus and APIC: HIV-infection (asymptomatics are eligible) Home Care: AIDS or HIV illness and chronic medical dependency due to physical or cognitive impairment from HIV infection Financial: Income less than $44,000/year for a household of one, less than $59,200 for two, and $74,400 for three or more Liquid assets less than $25,000 v. HIV/AIDS Services Administration (HASA) Introduction: What is HASA? The HIV/AIDS Services Administration (HASA) provides services and benefits to individuals and families with AIDS and advanced HIV illness. Services Provided: Home and hospital visits Individualized service planning Intensive case management Direct linkage to Public Assistance, Medicaid and Food Stamp benefits Assistance applying for SSI/SSD benefits Emergency, transitional, and permanent housing assistance and rental assistance
  • 38. 37 Home care and homemaking services Employment and vocational services Information and referrals to community-based agencies Counseling for clients and their families on daily living skills and available support system Guardianship and permanency planning for families with children Burial assistance What long-term housing options are available? Congregate Housing Scatter Site I Housing Scatter Site II Housing Independent Housing Congregate Housing Congregate housing is multi-unit housing with support services for seniors and for adults with disabilities who do not want to live alone. It combines privacy and companionship by offering each resident a private bedroom or apartment, and shared living space and activities. It is a rental agreement and client pays none or a portion of the rent, no utility and it is furnished. Services: On-site support staff, meals, pantry, activities, groups. Scatter Site 1 Permanent housing for single adults and families. Apartments are leased in the community based organization’s name. Tenant pays 30% of their income. Services: Off-site support staff offer case management, groups, life-skills training. Scatter Site II Apartment programs where client’s name is on the lease and they only receive 3 months of case management. Services: Off-site support staff (first 3 months of case management) and life-skills training. Independent Apartment programs where lease is in client’s name. Tenant pays for rent, utilities, cable and furnishing. HASA Vocational Rehabilitation Services Program: Vocational Rehabilitation Services Program for HASA clients provides a comprehensive range of vocational and educational activities. The Vocational Rehabilitation Services are voluntary and may be an option for your clients. The HASA Certified Rehabilitation Counselor (CRC) offers specialized coordination with internal and external program services. Clients are referred to other agencies while participating in vocational services within the agency.
  • 39. 38 The services include: 1. Vocational Rehabilitation Counseling: Focuses on client employment activities. Clients receive vocational counseling with CRC. 2. Client Rehabilitation Plan: This is a client’s written plan. The plan outlines the specific goals for a client to get a job. 3. Vocational Group: This is a vocational forum, designed to accommodate 10-15 members each week. Facilitated by CRC. 4. Career Exploration: Examination of the variety of occupations available, periodically conducted by CRC for each client. 5. Skills Training: An array of training activities provided by licensed vocational schools and other training institutions. 6. Skills Upgrading: When a client posses certain skills, the CRC refers client to workshops and classes that specialize in those skills. 7. Job Placement: CRC identifies appropriate employment service agencies that offer placement into actual positions. 8. Resume and Cover Development: Clients learn how to write and prepare cover letters and resumes. 9. General Equivalency Diploma (GED): Clients are referred to GED programs. 10. Literacy Classes: HASA refers clients to classes. 11. English as a Second Language (ESL): CRC coordinates participation in basic ESL courses. 12. HASA Readiness Groups: prepares clients to deal with a range of vocational concerns. 13. Skills Day: Introduces clients to a variety of skills, including basic computer literacy, typing, preparation of resumes and cover letters, etc. 14. Employment Resources Library: Vocational Rehabilitation Program maintains a resource library with vocational-related material, such as videos. 15. Vocational Educational Services for Individuals with Disabilities (VESID): CRC makes referrals for clients who are eligible. VESID offers job placement, financial assistance for college, or training expenses. If you have questions about HASA Vocational Rehabilitation Program, call 212.971.3188. HASA Eligibility HASA eligibility is based solely upon an applicant's medical diagnosis and permanent residency within the five boroughs of New York City. To establish eligibility, an applicant must, at any time, have been diagnosed with clinical symptomatic HIV as defined by the Centers for Disease Control and Prevention (CDC) or with AIDS as defined by the New York State AIDS Institute.
  • 40. 39 HASA Eligibility (cont.) Verifiable, Physician-signed documentation of: T-Cell Count <200 Diagnosis of an AIDS Defining Illness or Opportunistic Infection There are no expiration dates on diagnosis: Diagnosis can be from ANYTIME since the client was diagnosed HIV positive. For more information on advocating HASA visit http://www.sbls.org/hivfact1.htm Advocating HASA: Advice to Share with Your Transitioning Youth If case manager does not get back to you, call the site supervisor. If that does not work, call the center director (see Additional Resources section for contact information). If you are having difficulty with HASA, call legal service agencies, such as South Brooklyn Legal Services (see Additional Resources section section). Persistence. Persistence. Persistence. Follow up!!! Follow up!!! Build relationships. A strong working relationship with government agency employees and housing providers is very helpful. Write clear cover letters. Make copies for everything you’ve submitted and confirm receipt of submissions. Use the chain of command and other forms of accountability. Cite procedures, protocol, litigation, or law relating to the issue. File fair hearings and HASA appeal hearings when needed (see below). Follow applications/paperwork along their paths and call to confirm their movement from one place to another. Use your social skills to finesse results. Search for creative solutions to obstacles that may arise. Maintain a realistic and positive attitude at all times. Make sure you are not turned away due to the type of documentation provided to the Service Line. Always call the Service Line to ensure documents were received. Ask caseworker for a copy of the HASA Clients' Bill of Rights. Always document conversations including date, name of contact, etc. Ensure that you receive receipts whenever applying for benefits or services. If an agency employee will not help you, ask for a written explanation of the denial and go to the site director. Make sure you follow up on everything. Do not assume that a HASA worker will take care of problems. Keep a list of the papers you need to take to HASA and the deadlines for bringing them in. Bring someone with you if you need support or ask someone to go in your place if you are too ill. If you can't keep an appointment, call to say you can't make it and schedule another appointment. Keep your appointments. If you are homeless or have no food or income, you should take your M-11Q or other documentation to the Service Line in person and ask for emergency assistance, including emergency housing placement. Don't give up if the employee will not help you right away. Always ask for the name of the person with who you are working.
  • 41. Fair Hearing: Ask your unit supervisor for a case conference. This is an informal meeting at your welfare center. A fair hearing is a formal hearing in front of an Administrative Law Judge (ALJ). If you win (over 90% of clients win their hearings), the ALJ can order HASA to fix your problem. There are two different types of fair hearings available to HASA clients, one through the state government and one through HASA itself.You should request both hearings. The phone number to request a state fair hearing is 1-800-342-3334 or 877-209-1134; fax to 518-473-6735 or you can request a hearing in person at the Office of Temporary and Disability Assistance located at 14 Boerum Place in Brooklyn. The phone number to request a HASA fair hearing is (212) 620-9893; the fax number is (212) 620-9894.You can also request a hearing in person at the HASA Fair Hearing and Appeal Unit located at 12 West 14th Street, 6th Floor in Manhattan or online at www.otda.state.ny.us. The reception desk at your HASA center should have the forms for a HASA fair hearing available. 40
  • 43. 42 Additional Resources Transition Tools Transitional Charts: Documents to Monitor Young Adults’Transitional Processes Transition begins when the child is young. It is important that your youth understands that one day he/she will be have another provider. As the current provider, it is your responsibility to document your client’s transition achievements. You can include the following documents in your client’s chart to document transition: 1. Transition Tool White areas are suggested ages to address individual skills but plans should be individualized based on development Provider should initial and date each achievement 2. Adolescent Individualized Transition Plan This plan should be based on your client’s needs and interests 3. Transition Healthcare Assessment Your teen should fill out this sheet so you can assess their transitional needs You can discuss the assessment with your teen 4. Adherence Tool The staging questions, seven day recall, and general questions can be used to assess client’s current state of adherence The stage-specific activities are recommended activities This tool can be used multiple times to assess and assist with medication adherence
  • 44. 43 Name: DOB: MR# < 11 years of age 11 to 14 years of age 15 to 24 years of age Date Initiated: Date Disclosure: Discussed Achieved Discussed Achieved Discussed Achieved Knowledge of Health Condition and Management Child interacts directly with health care team, asks questions. Assess child's knowledge and perception of diagnosis. Build on their understanding. Assess adolescent/family's readiness and assist with disclosure. Able to answer "What is HIV?" Able to answer "What are T cells?" Able to answer "What is a viral load?" Verbalizes names and dosages of medications. Verbalizes rules for taking medications (with food, etc). Able to fill prescriptions and obtain refills. Verbalizes known possible side effects of medications. Takes medications independently. Able to independently make appointments. Able to independently give history. Verbalizes when and how to call the doctor. Verbalizes when and how to access urgent/emergent care. Able to set up transportation for appointments. Keeps calendar of appointments. Able to identify members of the health care team, roles and how to contact. Adolescent Engages in Preventative Health Behaviors Visiting dentist every 6 months. Current with immunizations and health screenings. Engages in preventative behaviors (exercise, nutrition, TSE, BSE, etc). Abstains from using alcohol, drugs, cigarettes and/or aware of risk reduction behaviors. Adolescent Demonstrates Knowledge of Responsible Sexual Activity Identifies high risk situations for exploitation and victimization. Knowledge of contraception options, STD, STD prevention Understands implications of diagnosis on pregnancy. Adolescents Demonstrates Knowledge of Health Insurance Concerns and Issues Identifies when eligibility terminates for health insurance. Verbalizes type of insurance, limits of coverage, how to contact. Knowledge of AIDS Insurance Continuation Program. Adolescent Demonstrates Knowledge of Community Resources Case Management - THAP, etc Support Groups ADAP: AIDS Drug Assistance Program White areas are suggested ages to address individual skills but plans would be individualized based on development, social situation & time of entrance into program. Please date and initial discussion/achievement boxes. 1. Transition Tool
  • 45. 2. Adolescent Individualized Transition Plan UniversityofSouthFlorida,PediatricInfectiousDisease Pre 21 year old Transition Assessment Projected Date: Participants: Education, Vocation, Career Plan: Family Support: Housing/Goals for Independent Living: Transportation: Funding (insurance, copay, prescriptions, OTC, SSI): Discuss timing of transition to adult care: Other: Plan: Signature: 24 year old Transition Assessment Projected Date: Participants: Education, Vocation, Career Plan: Family Support: Housing/Goals for Independent Living: Transportation: Funding (insurance, copay, prescriptions, OTC, SSI): Transition to adult care, choose provider: Plan: Signature: Initial Adult Care Appt: Physician: Phone: Records release consent signed: Records forwarded: First appt follow up phone call: 3 month follow up phone call: 44 44
  • 46. 45 Do you understand your health condition and how to take care of yourself? circle one 1 Do you understand what caused your medical condition? Yes No Not sure 2 Do you understand the changes/symptoms caused by your medical condition? Yes No Not sure N/A 3 Do you manage your own daily treatment needs? Yes No Sometimes 4 Do you have any problems with your daily treatment needs? Yes No Sometimes 5 Do you understand the tests (blood, x-ray) you have to take? Yes No Not sure 6 Do you know how to prevent spreading this to others? Yes No Not sure Do you know what to do to keep healthy? circle one 1 Do you have a Primary Care Physician (PCP) that you see at least once a year? Yes No Not sure 2 Are your shots up to date? Yes No Not sure 3 Do you use alcohol, cigarettes, drugs? Yes No Sometimes 4 Do you have unprotected sex? Yes No Sometimes N/A 5 Do you exercise 3 times a week or more? Yes No Not sure 6 Do you see a dentist every 6 months? Yes No Not sure 7 Do you brush and floss your teeth daily? Yes No Sometimes Do you know what to do to keep healthy? circle one 1 Do you have a phone to use in case of an emergency? Yes No Sometimes 2 Do you have the phone numbers of family and friends to call in emergencies? Yes No N/A 3 Do you have the phone numbers of health and non-health emergency services, such as poison control, fire and police? Yes No Not sure 4 Do you know where the closest emergency room is? Yes No Not sure Do You know how to monitor any special health care needs? circle one 1 Can you recognize when you are getting sick? Yes No Sometimes 2 Do you know when you need to call the doctor? Yes No Sometimes Do you know how to manage health care needs? circle one 1 Are you responsible for making your own appointments? Yes No Sometimes 2 Are you responsible for refilling your own medications? Yes No Sometimes 3 Do you know what pharmacy you use and have their phone number handy? Yes No Not sure 4 Do you know the names and doses of your medications? Yes No Not sure N/A 5 Do you know the common side effects? Yes No Not sure N/A Do you know how to communicate with health care providers? circle one 1 Do you know where to look for answers to your health questions? Yes No Sometimes 2 Do you feel comfortable asking questions at your appointments? Yes No Sometimes 3 Do you know how to contact your social worker or case manager? Yes No Not sure Do you know how to use community services? circle one 1 Have you used services in your community? Yes No Sometimes 2 Do you discuss your health care needs with your school nurse? Yes No Sometimes Do you demonstrate responsible sexual activity? circle one 1 Are you able to provide a reliable sexual history? Yes No Not sure N/A 2 Do you know what an STD is and how it can affect you? Yes No Not sure N/A 3 Do you have enough information about birth control and ways to prevent STDs? Yes No Not sure Do you obtain information and reproductive counseling when needed? circle one 1 Do you understand how your medical condition affects becoming pregnant or having a child? Yes No Not sure N/A 2 Do you understand the problems associated with an unplanned pregnancy? Yes No Not sure N/A 3 Do you think you understand the responsibilities of being a parent? Yes No Not sure Continued on following page. ¡ 3. Transition Healthcare Assessment
  • 47. 46 Do you have knowledge of health insurance concerns and issues? circle one 1 Do you know the rules and requirements of your health insurance? Yes No Not sure N/A 2 Are you able to cover expenses not covered by your insurance? Yes No Not sure N/A 3 Have you applied for income assistance, SSI or other public services? Yes No Not sure N/A 3. Transition Healthcare Assessment - continued Do you use transportation safely? circle one 1 Do you have a drivers license? Yes No N/A 2 Do you use buses or other forms of public transportation? Yes No Sometimes N/A 3 Do you use bus or other travel schedules for getting rides? Yes No Sometimes N/A 4 Do you have the money you need to get bus passes or use your car? Yes No Sometimes N/A 5 Do you have any problems in getting to where you need to go? Yes No Sometimes N/A 6 Do you use Medicaid Share Van, Medicaid Cab? Yes No Sometimes N/A 7 Do you feel safe taking the bus, van, or driving? Yes No Sometimes N/A 8 Do you know how much time you need to get to your appointments on time? Yes No Sometimes N/A Comments or Questions: Name: DOB: MR# Adapted from California Healthy and Ready to Work transition matierials, 1 MCJ D6HRW9-01-0, University of Southern California, Department of Nursing: www.cahrtw.org Do you keeps track of your health records? circle one 1 Do you have a copy of your health records, current medications, doctor contact number, and address? Yes No Not sure 2 Do you have an insurance card or copy of it? Yes No Not sure N/A 3 Do you have a method of keeping tract of your health care appointments? Yes No Not sure
  • 48. 47 ID: ____________________________ Date and Day of Week: ___/___/___ _______ Medications: What times did you take HIV meds each day? Did you miss any doses? Which doses did you miss? Why did you miss these doses? If meds were taken at different times each day, why? For clients not on meds: What times do you think would be good to take HIV meds each day? Adherence Tool SEVEN-DAY RECALL Activities: What was your schedule like this week? Is this what your schedule is typically like? If no, what was different and why was it different? Feelings: How did you feel (emotionally and physically) this week? Why do you think you felt this way? Is this how you typically feel? If no, how do you usually feel? AM AM AM AM AM AM AM PM PM PM PM PM PM PM
  • 49. 48 For clients taking HIV meds: 4) What times did you take HIV medications on that holiday? 5) Did you miss any doses on that holiday? 6) Which doses did you miss? 7) If meds were taken at a different time on that holiday, why? For all clients: 1) What did you do and how did you celebrate the last holiday? 2) Did your schedule differ at all from your typical daily schedule? If so, how was it different from your daily schedule? 3) How did you feel (emotionally and physically) on that holiday? Please list all medications taken, including the # of doses/day, and times taken. 1) 2) 3) 4) b) If yes, why were you hospitalized? For all clients: 1) Were you hospitalized during the previous month? a) If yes, when were you hospitalized? 3) How many bottles of medicine do you have at home? 4) Did you have any problems this month in getting your HIV medsmedications from your pharmacy? If yes, please explain. For clients taking HIV medications: 1) When was the last time you called or spoke to your pharmacy? 2) Who called the pharmacy for your last pick-up? 5) 6) 7) 8) HOLIDAYS HOSPITALIZATIONS PHARMACY INFORMATION ID: ____________________________ Date and Day of Week: ___/___/___ _______ Adherence Tool
  • 50. 49 Assess client’s knowledge of HIV pathogenesis, viral load, t-cell count and educate client on these issues based on their level of knowledge and understanding. Discuss clients’ feelings and knowledge about HIV and meds and explore the sources from which client gets his/her info. Begin to introduce new or additional information on HIV to correct any misinformation. Elicit information about client’s HIV experience, previous medical care, and use of HIV medications. Help raise clients’ awareness of the potential risks and/or consequences of their actions and behaviors. Explore client’s feelings and understandings of illness, treatment and medications. Assess client’s level of comfort with health professionals and cultural attitudes toward health care. Introduce the concept of “client-provider partnerships” in decision- making and the importance of open communication. Begin to discuss disclosure and help person to become more comfortable with their own HIV status. Begin discussing with caregivers the possibility of disclosing their child’s HIV status to those children (particularly for older children and adolescents) who are unaware of their own status. Suggest client get involved with peer counseling/groups and begin talking to peers who take meds or give meds to their children. List others: _______________________________________________________ _______________________________________________________ Inquire if client has heard anything about HAART meds from “uninformed sources” in order to correct misinformation. Have client speak with someone in same situation who has been successful with medications. Discuss how meds impact self-image—“I’m sick.” Assist clients to develop an accurate risk perception of the costs and benefits of taking the medications, along with realistic expectations of taking meds. Begin to connect benefits with client’s long-term goals. Link benefits of taking medication to client’s long-term goals (e.g., finishing school, having a healthy baby, etc.) Do a mock medication week/month with candy. Have client keep a diary of daily activities before starting meds. Present the options of journal writing to explore feelings around HIV, illness, taking medications and self-image. Have client think of a friend/support person who could remind them to take/give meds. Explore with client how their current behavior and actions and the new behavior may impact their self-image. Help client to understand and assess their options for resolving prob- lems that may hinder their ability to take medications or maintain adherence. List others: ________________________________________________________ ________________________________________________________ Stage Specific Activities for Providers Working with Clients Regarding Medication Adherence CONTEMPLATIONPRECONTEMPLATION (Please circle activities you used:)ID#: ______________________ Have you been taking medications regularly for more than 6 months? Yes (Maintenance Stage) No (go to next question) Are you in the process of trying to take medication regularly? Yes (Action) No (go to next question) In the next 30 days, are you going to consider taking medication regularly? Yes (Preparation Stage) No (go to next question) In the next 6 months, are you going to consider taking medication regularly? Yes (Contemplation Stage) No (Precontemplation Stage) Use the following questions to identify your client’s current stage: Adherence Tool
  • 51. 50 Have client speak with someone in same situation who has been successful with meds. Explore clients’ fears about meds via role play. Help client identify and develop skills needed to begin taking meds or to improve adherence if already on meds (see examples below.) Teach and practice pill swallowing with candy. Conduct a medication taste test with clients on liquid meds. Use medicine diluters, e.g., flavored milk or yogurt. Have client do a “dry run” of taking meds with candy to make sure med times really work with daily routine. Develop a plan for management of side effects, including ways to manage them and pre-prescribe the solution, e.g., Imodium for diarrhea. Link client to home services, pharmacy support, and home medicine deliveries. Help client develop and keep to a regular daily schedule. Review available resources to use as reminders, e.g., beepers, pill boxes, calendars. Provide additional reminders if needed. Provide a resource list of stress reduction, respite, and medical care services. List people who are important and are affected by whether client takes meds. Discuss how these people can help with the medication regimen. Encourage client to take responsibility for choosing and carrying out changes. Provide both individual and family counseling for preparing to begin medications. Home care intervention when necessary and feasible; offer in-home support, help to set up appropriate medication storage, assist with scheduling and administration of child’s medications. List others: _____________________________________________ _____________________________________________ Help clients to develop contingency plan to prevent potential relapses. Review basic HIV and medication education and provide client with additional updated information when available. Continue to conduct medication regimen review. Give extra support and guidance during life transitions, e.g. client changes schools. Help promote support groups by providing lunches and/or parties. Schedule the support groups’ medical appointments on the same clinic day. Work around environmental barriers, upcoming vacation, family gatherings, holidays. Suggest client become a peer educator to other clients on HAART. Continue to reward client at pre-set benchmarks for their success with HAART. Suggested rewards include: ceremonies, special lunches, incentives, giving client extra attention, publicly rewarding client. Continual review of ALRs if needed. Continue to assess clients’ service needs (visiting nurse service, home health aide, counseling, support group, family support, childcare, etc.) Encourage clinic staff and other members of clients’ support network to acknowledge barriers client has overcome and to congratulate them for their successes. Notice and compliment changes client has made in his/her social environment that support adherence. Encourage client to remember times before taking meds and compare to present situation. Stress the benefits of the present situation and changes made. Help client to reframe temporary relapses. Discuss with clients how they can learn from the experience to help him/her succeed later. List others: _____________________________________________ _____________________________________________ Continue to assess and build upon skills needed to maintain good adherence (e.g., problem solving skills, self-efficacy, making positive changes in environment.) If client is having difficulties, remind him/her of another difficult experience/behavior that was achieved or overcome. Normalize coping skills. Discuss how taking meds might be disrupting client’s daily schedule. Link med schedule to daily activities and change med schedule when needed. Set med times when client will be home to avoid public administration of medication. Have client assess where they spend time outside of home and leave a day’s worth of medication there, e.g., relative’s house. Create a chart graphing client t-cell count and viral load in order to track his/her progress and success. Reward client at pre-set benchmarks for their success with HAART. Suggested rewards include: ceremonies, special lunches, incentives, giving client extra attention, publicly rewarding client. Encourage clinic staff to recognize client success and congratulate client. Continue to assess clients’ service needs (for adherence and other needs) and assist client in making appropriate arrangements to receive such services. Meditation or other forms of relaxation therapy to manage symptoms. If English is not client’s native language, have pharmacy print instructions in second language. If client’s reading level is low, have pharmacy print instructions in symbols. Maintain frequent contact with clients new to HAART. Encourage client to make changes in their social environment that will help with adherence (e.g., making new friends who support adherence.) Encourage clients to attend appropriate support groups. After each successful week, have client give him or herself a “treat.” Give clients compliments and statements of appreciation and understanding for their efforts. Have providers from different department inquire about clients’ meds to build overall support system for clients’ adherence. List others: ________________________________________________ Stage Specific Activities for Providers Working with Clients Regarding Medication Adherence MAINTENANCE ACTIONPREPARATION (Please circle activities you used:)ID#: ______________________
  • 52. 51 Self-Advocacy and Self-Care Information published in this booklet is considered to be true and correct at the date of publication. Changes in circumstances after the time of publication may impact on the accuracy of the information. We have no control at all over the information on linked sites. About HIV TRUE FALSE DONT KNOW HIV and AIDS are the same thing HIV is a virus that attacks a person’s immune system The cells of the immune system that fight infection are called “T-cells” or “CD4 cells” The amount of HIV in a person’s blood is called “viral load” There is a cure for HIV You can tell if a person has HIV by looking at him or her People with HIV may feel healthy for years A person with HIV will stay healthy if their “T-cells” are high and their “viral load” is low There is a vaccine for HIV Even though a person with HIV may feel healthy, the virus is damaging his/her immune system AIDS is the last stage of HIV HIV stands for Human Immunodeficiency Virus AIDS stands for Acquired Immune Deficiency Syndrome People with AIDS my get sick easy, lose weight, have yeast infections, pneumonia, and low “T-cells” Treatment TRUE FALSE DONT KNOW There is a cure for HIV If I take my medicine, I don’t have to use condoms when I have sex It is OK to miss doses of medication If I stop taking one HIV medication, I should stop all of my HIV medication I should call the doctor/nurse/pharmacist if I stop my medicine If I miss doses of medicine, the virus will become resistant and the medicine won’t work I should see the doctor and check my “T-cells” and “viral load” every 2-3 months The cells of the immune system that fight infection are called “T-cells” or “CD4 cells” The amount of HIV in a person’s blood is called “viral load” A person with HIV will stay healthy if their “T-cells” are high and their “viral load” is low If my viral load is “undetectable” I am cured of HIV Alcohol, marijuana and other drugs do not interact with my HIV medicine If I forget to take my medicine, I should take it as soon as I remember, even if it is a few hours University of South Florida/All Children’s Hospital, Pediatric/Adolescent Infectious Disease The following tool can be used to assess adolescents’ knowledge of HIV: HIV Assessment
  • 53. 52 Primary Doctor Date: Time: Location: Doctor's Name: Questions for Doctor & Discussion Topics: Important Issues Presented by Doctor: Next Appointment Date: Referrals Date: Time: Location: Doctor's Name: HIV Assessment In addition, we have provided an ‘Appointment Tool’ that may be used by patients to document their medical encounters with their primary care physician and specialists.
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  • 55. 54 Employment Employment Certificate (previously known as Working Paper) Students 14-17 who work must have an Employment Certificate. Students should contact their school or regional office for information about where to obtain an Employment Certificate. All NYC public intermediate/junior high and high schools are required to issue Employment Certificates to public school students as well as to students who attend private, parochial and out-of-state schools. They are required to issue the Certificates until the last day of the official school calendar. For further information please contact: New York City Department of Education Office of Attendance 212.374.6095 Education & Job Information Center Brooklyn Public Library Grand Army Plaza Brooklyn, NY 11238 1.718.230.2177 http://www.brooklynpubliclibrary.org/ejic.jsp Agencies for Young Adults NOTE: Proof of eligibility is required in most places. Age and income requirements may apply. Call each site for details. Access for Women New York City College of Technology Expanding Options for Teen Parents & Youth 300 Jay Street, H-407 Brooklyn, NY 11201 718.552.1131 Academic skills, Pre-GED preparation, career education and family life counseling. For out-of- school youth. Ages 16-21. Catholic Charities Diocese of Brooklyn Dr. White Community Center 200 Gold Street Brooklyn, NY 11201 718.875.8801 In-School Youth Program: tutoring, counseling, job readiness preparation. Income and other eligibil- ity requirements. Ages 14-18. Colony South Brooklyn Houses 297 Dean Street Brooklyn, NY 11217 718.625.3810 Summer youth program: vocational training and job placement for the summer. Ages 14-21. In- School Youth Program: basic skills, work readiness, tutoring, mentoring. Income restrictions. Ages 14-18.
  • 56. 55 Covenant House Regional Training Center: 346 West 17th Street New York, NY 10011 212.727.4014 Brooklyn Resource Center: 75 Lewis Avenue Brooklyn, NY 11206 718.452.6730 20 New York Avenue Brooklyn, NY 11216 718.398.5136 http://www.covenanthouseny.org Job training and employment services. After completing job readiness training at a Brooklyn Resource Center teens may participate in programs offered at the Regional Training Center: bank teller, culinary arts, desktop publishing, introduction to computers, silk screening, nurse’s aide, con- struction, security guard. Youth currently working are welcome to come to community site to meet counselors and participate in life-skills workshops. Ages 16-21. Crown Heights Service Center 1193 Dean Street Brooklyn, NY 11216 718.774.9800 In-School Youth Program: academic support, job readiness, counseling, career guidance, college advisement and placement in summer youth employment program. Two-year program. Ages 14-18. Educational and career guidance for out-of-school youth. Crown Heights Youth Collective 915 Franklin Avenue Brooklyn, NY 11216 718.756.7600 http://www.cfapa.com Job readiness workshops and career counseling. Ages 14-26. Monday-Friday: 10 AM-4 PM. The Door 121 6th Avenue (enter at 555 Broome Street) New York, NY 10013 212.941.9090 http://www.door.org Job readiness and job placement. Also legal, health, counseling, day care, educational and recre- ational services. Ages 12-21. English, Spanish and Chinese spoken. Call for appointment. FEGS/Career Development Institute 105 Bruckner Boulevard, 2nd Floor Bronx, NY 10454 718.292.3930 www.fegs.org GED preparation, job placement and computer workshops. Income and other eligibility require- ments. Ages 19-21.
  • 57. 56 Grand Street Settlement 80 Pitt Street New York, NY 10002 212.674.1740 Contact: Pablo Tejada, ext. 288 http://www.grandstreet.org Youth on the Move Program: job readiness and job placement. Participants must join Teen Services, a comprehensive youth program. Ages 14-19. Job Corps Nonresidential Program: Brooklyn Job Corps Academy 585 DeKalb Avenue Brooklyn, NY 11205 718.623.4000 Admissions and Residential Program: 185 Montague Street, 4th Floor Brooklyn, NY 11201 718.624.8939 http://jobcorps.doleta.gov http://www.jobcorpsny.com Federally funded education and job training/placement for low-income, at-risk youth. Residential and nonresidential programs. Stipend included. Pre-admissions orientation Mondays and Tuesdays, 1:45 PM, at Montague Street location (birth certificate and Social Security Card required). Ages 16-24. New York City Department of Youth and Community Development NYC Youthline 800.246.4646 800.246.4699 (TDD) Confidential and anonymous counseling for parents and youth. Information about thousands of services throughout the city, such as vocational/career opportunities, tutoring and after-school pro- grams. Monday-Friday: 9 AM-9 PM; Saturday-Sunday: noon-8 PM. New York City Job and Career Center Manhattan Branch 255 West 54th Street, 2nd Floor New York, NY 10019 212.247.5650 Job application, resume and interviewing workshops. Career guidance. College and vocational exploration online. Group learning for fee. Ages 14+. New York State Department of Labor Youth Services http://www.labor.state.ny.us/working_ny/finding_a_job/youth/youth.htm Listing of state-funded Youth Education, Employment and Training Programs (YEETP) for in-school and out-of-school youth; also apprenticeship programs and career information. Opportunities for a Better Tomorrow Youth Employment Program 783 Fourth Avenue Brooklyn, NY 11232 718.369.0303 http://www.obtjobs.com Job training, clerical skills, basic computer training, typing, business courses, ESOL and GED classes. Ages 17+. Call for appointment.
  • 58. 57 Project Reach Youth 199 14th Street, 3rd Floor Brooklyn, NY 11215 718.768.0778 http://www.pry.org Variety of teen programs, such as GED preparation and tutoring. Job training and placement. Ages 13-18. Call for information. Ridgewood/Bushwick Senior Citizens Council Youth and Education Department 1474 Gates Avenue Brooklyn, NY 11237 718.381.9653 Youth Employment Program: job readiness, tutoring, career exploration and counseling, intern- ships. For low-income, in-school youth. Ages 14-18. Registration in late August. St. Nicholas Neighborhood Preservation Corporation/YouthWorks 161 Graham Avenue Brooklyn, NY 11206 718.486.7180 Twelve-week training program prepares unemployed, out-of-school youth to work in programs for school-age children, such as day care, community recreation centers and after-school programs. Daily stipends for lunch and MetroCard; plus completion stipend upon graduation. Also GED prepa- ration. Ages 19-21. Vannguard Urban Improvement Association, Inc. 613-619 Throop Avenue, 3rd Floor Brooklyn, NY 11216 718.453.3330 GED preparation for out-of-school youth. After-school education programs for in-school youth. Ages 14-20. Vocational Foundation, Inc. One Hanson Place, 14th Floor Brooklyn, NY 11243 718.230.3100 ext. 1025 http://www.vfinyc.org Job training in hospitality/travel and tourism, medical billing and computer technology. Also aca- demic classes, counseling and job placement. Reading level of 7th grade or above required. Ages 17-30 (young fathers); ages 17-21 (all others). YouthBuild Urban Strategies YouthBuild 287 Sumpter Street Brooklyn, NY 11233 718.452.5479 Combined GED/job training program in which youth learn construction skills by building affordable housing in local communities. Income restrictions. Out-of-school youth only (proof required). Ages 16-24.
  • 59. 58 Permanency Planning Legal Assistance Agencies we recommend contacting regarding wills/permanency planning to ensure adolescents have documents in place. The Family Center Manhattan 66 Reade Street New York, NY 10007 - 212.766.4522 The Family Center Brooklyn 584 Nostrand Avenue Brooklyn, NY 11216 718.230.1379 http://www.thefamilycenter.org/programs/legal.php Gay Men’s Health Crisis The Tisch Building, 119 West 24 Street, New York, NY 10011 212.367.1000 http://www.gmhc.org/programs/legal.html HIV Law Project 15 Maiden Lane, 18th Floor New York, NY 10038 Phone: 212.577.3001 http://www.hivlawproject.org/NEW_SITE/whats_new.html Bronx AIDS Services, Inc. www.basnyc.org 540 East Fordham Road Bronx, NY 10458 Phone: 718.295.5605 Fax: 718.733.3429 New York Council on Adoptable Children (COAC)/AIDS Orphans Program www.coac.org 589 8th Avenue, 15th Floor New York, NY 10018 Phone: 212.475.0222 Queens Legal Services Corp. www.queenslegalservices.org 89-00 Sutphin Blvd. Jamaica, NY 11437 Phone: 718.657.8611 South Brooklyn Legal Services, Corp. B - HIV Project 105 Court Street Brooklyn, NY, 11201 718.237.5546, 718.237.5509, and 718.237.5569
  • 60. 59 Staten Island AIDS Task Force www.aidsinfonyc.org/siatf 25 Hyatt Street Staten Island, NY, 10301 718.981.3366 If you would like more information on health care proxies or to obtain a copy of a health care proxy, feel free to contact the National Alliance for the Mentally Ill at 800-950-3228. Entitlements Medicaid Application Process Your client can apply for Medicaid by writing to, calling, or visiting their local department of Social Services: http://www.health.state.ny.us/health_care/medicaid/ldss.htm We have provided a list of Medicaid offices in the New York City area below. Your client can also complete common Medicaid and Family Health Plus application: http://www.health.state.ny.us/nysdoh/fhplus/application.htm If your client has questions regarding Medicaid call 1-877-472-8411. Documents Needed to Apply Proof of age, like a birth certificate Proof of citizenship or alien status* Recent paycheck stubs (if you are working) Proof of your income from sources like Social Security, Supplemental Security Income (SSI), Veteran's Benefits (VA), retirement Any bank books and insurance policies that you may have Proof of where you live, like a rent receipt or landlord statement Insurance benefit card or the policy (if you have any other health insurance) Medicare Benefit Card *NOTE: Medicaid coverage is available, regardless of alien status, if you are pregnant or require treatment for an emergency medical condition. A doctor must certify that you are pregnant or had an emergency, and you must meet all other eligibility requirements. Documentation checklist: Please see next page for documentation checklist. Checklist can also be accessed at: http://www.health.state.ny.us/nysdoh/fhplus/pdf/4220b.pdf
  • 61. 60 PROOF OF IDENTITY/DATE OF BIRTH AND RESIDENCE: You must show ONE of the documents listed in both categories to see if you are eligible for health insura n c e. Discuss this with the person helping you with your application. Photocopies are acceptable. Drivers license/Official Photo identification Passport* Birth certificate* Baptismal/other religious certificate* Official School records Adoption records Official Hospital/doctor birth records* Naturalization certificate* Marriage records RESIDENCY/HOME ADDRESS (this must match the home address in Section A, and the proof must be dated within 6 months of the application) ID card with address Postmarked envelope, postcard, or magazine label with na me and da t e (cannot use if sent to a P.O. Box) Drivers license issued within past 6 months Utility bill (gas, electric, cable), or correspondence from a government agency which contains name and street address Letter/lease/rent receipt with home address from landlord Property tax records or mortgage statement Paycheck stubs (4 consecutive weeks) Letter from employer on company letterhead, signed and dated Income tax return/W-2** Business records Award letter/certificate Benefit check Correspondence from Social Security Administration Award lettertificate Check stub Statement from bank, credit union or financial institution Letter from broker Letter from agent PROOF OF CURRENT INCOME: You must provide a letter, written statement, or copy of check or stubs, from the employer, person or agency providing the income. Submit all that apply. Provide the most recent proof of income before taxes. The proof must be dated, include the employees name and show gross income for the pay period. Letter from person pro v id i ng support Letter from court Child support/alimony check stub Signed and dated income tax return and all Schedules** on Records of earnings and expenses Award letter Check stub Award letter Benefit check stub Correspondence from Veterans Administration Award letter/certificate Benefit check Correspondence from NYS Dept. of Labor Letter from roomer, boarder, tenant Check stub Statement from pension/annuity Signed statement or letter from family member ** W-2s or income tax returns for other than self-employed may be used for applications prior to April of the following year. If later, you must include another form of documentation. * May also be used to document citizenship or immigration status. Your enrollment cannot be completed until all checked items are received. Please return these items by ___________. If you need help getting any of these items, let us know. Applicant Name__________________________________________________________ Application Date _____________________ IDENTITY/DATE OF BIRTH (not required for recertification) DOCUMENTATION CHECKLIST For Health Insurance Wages and Salary Social Security Military Pay Self-Employment Child Interest/Dividends/Royalties Unemployment Benefits Worker's Income from Rent or Private Pensions/Annuities Veteran's Benefits Support from Other Family Members
  • 62. 61 DOCUMENTATION CHECKLIST For Health Insurance DEPENDENT CARE COSTS: DEPENDENT CARE COSTS: DEPENDENT CARE COSTS: Presumptive Eligibility Screening Worksheet completed by qualified provider Statement from medical professional with expected date of delivery WIC Medical Referral Form Proof of Proof of income for the month(s) in which the expense was incurred Proof of residency/home address for the month(s) in which the expense was incurred For determination of eligibility for medical expenses from the past three months: U.S. Birth Certificate U.S. Baptismal record, recorded within 3 months of birth U.S. Passport Naturalization certificate Official Hospital/doctor birth records Citizenship Bank Statement Life Insurance policy Deed or Appraisal for Real Estate Copies of stocks, bonds, securities Motor Vehicles — Estimate from dealer, “blue book” value Burial Agreement Trust Fund Resources (persons age 19 and over, only if checked by interviewer) DHS form I-551 (Green Card) USCIS form I-94, I-210 letter, I-220B, or I-181 Other USCIS documentationorcorrespondence (I-688B, I-766, I-797) OtherUSCISdocumentation,or correspondence to or from the USCIS, that shows that the alien is PRUCOL; that is, the a lien is living in the U.S. with the know ledge and permission or acquiescence of the USCIS, and the USCIS does not contemplate enforcing the alien’s departure from the U.S. Insurance policy Termination Letter Certificate of Insurance Medicare Card Insurance card Other Written statement from day care center or other child/adult care provider Canceled checks or receipts PREGNANT WOMEN ONLY MEDICAID/CHILD HEALTH PLUS A ONLY FOR MEDICAID, CHILD HEALTH PLUS A AND FAMILY HEALTH PLUS ONLY
  • 63. 62 Medicaid Offices NOTE: Offices are open from 9:00 AM to 5:00 PM, Monday through Friday, except Coney Island, which is also open on Saturdays from 9:00 AM to 12:00 PM. Human Resources Administration 718.557.1399, or 1.877.472.8411 (toll-free within the five boroughs of New York City) Bronx Medical Assistance Program Bronx Lebanon Hospital Medicaid Office 1316 Fulton Avenue (1st Floor) 718.860.4634/4635 Jacobi Hospital Medicaid Office 1400 Pelham Pkwy. (Ambulatory Care Pavilion –1st fl.) 718.822.5435/5432 Lincoln Hospital Medicaid Office 234 East 149th St. (Basement – Room B-75) 718.585.7872/7920 Morrisania Medicaid Office 1225 Gerard Avenue (Basement) 718.960.2799/2752 North Central Bronx Hospital Medicaid Office 3424 Kossuth Avenue (1st Fl. – Room 1A 05) 718.920.1070 Boerum Hill Medicaid Office 35 4th Avenue 718.623.7427/7428 East New York Medicaid Office 2094 Pitkin Avenue (Basement) 718.922.8292/8293 Coney Island Medicaid Office 30-50 West 21st Street 718.333.3000/3001 Woodhull Hospital Medicaid Office 760 Broadway (Ground Floor) 718.630.3397/3398
  • 64. 63 Brooklyn Kings County Hospital Medicaid Office 441 Clarkson Ave. “T” Bldg. Nurses’ Residence (1st Fl.) 718.221.2300/2301 Bellevue Hospital Medicaid Office 466 First Avenue and 27th St. “G” Link (1st Floor) 212.679.7424 Columbia Presbyterian Hospital Medicaid Office 622 West 168th St. (1st Fl.) PH 040 212.342.5102/5103 Gouverneur Hospital Medicaid Office 227 Madison Street (7th Floor) 212.238.7790 Harlem Hospital Medicaid Office 530 Lenox Avenue (Ron Brown Bldg.) – 1st Floor, Rm. 1061 212.939.8504 (Use the 137th. Street Entrance) Manhattan Metropolitan Hospital Medicaid Office 1901 First Avenue (1st Fl. – Room 1D-27) 212.423.7006 Elmhurst Hospital Medicaid Office 79-01 Broadway (Room D4-17) 718.476.5904 Jamaica Medicaid Office 90-75 Sutphin Blvd. (6th Floor) 718.523.5699 Queens Rockaway Medicaid Office 219 Beach 59th. St. (1st. Floor) 718.634.6910 Staten Island Staten Island Medicaid Office 215 Bay Street 718.420.4660/4732Family Health Plus
  • 65. 64 Family Health Plus Application Process To download an application: http://www.health.state.ny.us/nysdoh/fhplus/application.htm To apply for Family Health Plus, you will need to have a personal interview where you will complete an application, provide proof of certain information, and select a health plan. Enrollment facilitators are available near your home or work, to help you apply, ease the enrollment process and answer your questions. Many facilitators are available during weekend and evening hours at locations around the State. Local social services districts can also help you apply. Enrollment facilitators and local social service districts will make an appointment with you to help you complete an application. Click here to find an enrollment facilitator near you: http://www.health.state.ny.us/nysdoh/fhplus/where.htm New York City Family Health Plus Application Centers Affinity Health Plan 866.AHP.5678 Alianza Dominicana 212.740.1960 Bellevue Hospital Medicaid Office 212.679.7424 CenterCare, Inc. 800.545.0571 Children's Aid Society 212.503.6804 Columbia Presbyterian Hospital Medicaid Office 212.342.5102/5103 Community Premier Plus, Inc. 800.867.5885 Fidelis/NYS Catholic Health 888.343.3547 Generations + /Northern Manhattan Health Network 718.579.4900 Bronx or 212.423.7000 New York Gouverneur Hospital Medicaid Office 212.238.7790 Harlem Congregations for Community Improvement, Inc. 212.491.1119
  • 66. 65 Harlem Hospital Medicaid Office 212.939.8505 / 8511 Health First PHSP, Inc. 800.404.8778 English or 800.408.8778 Spanish HealthPlus, Inc. 888.809.8009 HIP 800.HIP.TALK or 800.447.8255 Hispanic Federation 212.233.8955 Medical and Health Research Association of New York City, Inc. 212.748.0400 MetroPlus Health Plan 800.475.METRO or 800.475.6387 Metropolitan Hospital Medicaid Office 212.423.6583/7006 Neighborhood Health Providers/Royal Health Care 800.826.6240 New York City Department of Health 212.788.5500 NewYork-Presbyterian Community Health Plan 800.261.4649 Union Health Center 212.812.3690 United Healthcare of NY, Inc 888.617.8979 WellCare of New York, Inc. 800.288.5441 Documents Needed to Apply Documentation checklist: See page 60 for documentation checklist. The same checklist applies for Medicaid and Family Health Plus.
  • 67. 66 Supplemental Security Income (SSI) Application Process Can apply the day a youth turns 18 – not dependent on parent’s income Clients must apply with the Social Security Administration, the federal agency that administers SSI. Contact local Social Security office to make an appointment; with an appointment, a representative will help client apply for benefits. To find local Social Security office: https://s044a90.ssa.gov/apps6z/FOLO/fo001.jsp Documents Needed to Apply You may not need all of the following documents. Sometimes one document can substitute for another. The lists are not all–inclusive. Social Security representatives will tell you what you need and what other documents are acceptable. Representatives will also help your client get docu- ments if they are having trouble. Social Security card or number Proof of age: A public birth record recorded before age 5; or A religious birth record recorded before age 5; or Other documents showing age or date of birth Citizenship or alien status: Birth certificates showing you were born in the United States; or Religious record of birth or baptism showing your place of birth in the United States; or Naturalization certificate; or U.S. passport; or Certificate of citizenship For aliens: a current immigration document, e.g., I–551 (Permanent Resident Card) or I–94 (Arrival/Departure Record) Proof of Income: Earned Income – payroll stubs, or if self–employed, a tax return for the last tax year Unearned Income – any records you have (for example––award letters, bank statements, court orders, receipts) showing how much you receive, how often, and the source of the payment Work Expenses Proof of Resources: Bank statement(s) for all checking and savings accounts Deed or tax appraisal statement for all property you own besides the house you live in Life or disability insurance policies Burial contracts, plots, etc. Certificates of deposit, stocks, or bonds Car titles or registrations Proof of Living Arrangements: Lease or rent receipt Names, dates of births, medical assistance cards or Social Security numbers for all house hold members Deed or property tax bill Information about household costs, food, utilities, etc. Medical Sources: Medical reports Names, addresses, and telephone numbers of doctors and other providers of medical services and dates treated. Work History: Job titles Type of business Names of employers Dates worked Hours worked per day
  • 68. 67 HASA Application Process To download application: http://www.nyc.gov/html/hra/html/medical_insurance/hasa.shtml Step One: the HASA Service Line is the central intake point for all applications for HASA. The client, either directly or with assistance from a case manager, social worker, medical provider, or other advocate, faxes or mails eligibility documentation to the Service Line. Service Line: 400 Eighth Avenue, New York, New York 10001 Tel: 212.971.0626 Fax: 212.971.0820 Monday – Friday: 9am –5pm Step Two: Service Line will contact medical provider to verify that information is correct. Cases will be prioritized to determine the need for a Case Manager. Immediate Case Managers are assigned to the following: Homeless; or Homebound; or Facing an eviction Step Three: The client will be assigned to a HASA Unit in a HASA Center in any of the boroughs. Clients with children under 18 are assigned to a Family Unit. Homeless clients will be assigned to either an Intensive Housing Service Unit, and/or to an emergency hotel placement, until permanent housing is found. If client is in hotel placement for more than 90 days, s/he is assigned to the Transitional Housing Unit. Step Four: The HASA Case Manager must determine client’s immediate needs and assist client in securing benefits and services. Emergency and Immediate Needs may include the following: Facing eviction No Food in the house No income coming to the family. Documents Needed to Apply Acceptable forms of proof are: M11-Q form signed by a doctor Letter of diagnosis on Dr.’s letterhead ADAP application signed by doctor Referral form sent by hospital Comprehensive Medical Summary from prison
  • 69. 68 HASA Contact Information Elsie del Camp, Deputy Commissioner of HASA, 212.620.4655/44 Coney Island (#63) Site Director: Chilove Kernizan 718.333.3340/1 Brownsville (#73) Site Director: Jennifer Carroll 718.923.5861 Greenwood Center (#85) Site Director: Janice Scott 718.694.8994/5
  • 70. 69 ADAP Application Process To download applications go to: http://www.health.state.ny.us/diseases/aids/forms/adapforms.htm or call ADAP at 1.800.542.2437 to request an application for your client. Same application can be used for ADAP, ADAP plus, and HIV home care. Note: an additional application is required for APIC. If you have questions regarding ADAP, call 800.542.2437 (9am-5pm). Documents Needed to Apply Proof of residency, income, and assets. A Medical Application signed by a licensed medical professional is required, verifying HIV- infection and indicating the applicant's medical status. A treatment plan by a physician must also be submitted for Home Care applicants.
  • 71. 70 Children's Hope Foundation www.childrenshope.org Partnership for Family Health: Northern Manhattan HIV Consortium MHRA, Inc. www.pffh.org