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- 1. InsideWhat’s The caregivers’ world is running amok! New policies, new focus, new thinking, and new expectations are affecting every aspect of providing supportive care to individuals with special needs. There’s no place to hide. The changes (e.g. outcome-based quality assurance, person-centered planning, natural supports, etc.) are affecting every avenue of care from residential settings to vocational settings, from classrooms to community centers. Adopt, adapt, or adios. To the long term Direct Support Profes- sional (DSP), it can seem like just the ongoing fashion and fad of a discipline perpetually in search of itself. During this century they have seen the shift from family homes to state facilities, and now another shift back to commu- nity homes. And they’ve been asked to weather the storm, see the light, and get in step with change once more. Coping With Change FromWalking Upright to Supported Living FrontlineInitiativeNewsletter A Quarterly Newsletter of the National Alliance for Direct Support Professionals Frontline Volume 2 • Number 1 •Winter 1998 Change Initiative Change doesn’t come easily to humans. Sure we’re a resilient bunch, capable of learning new skills, even – if need be – of changing our posture (upright walking was a major change that some of us still struggle with). But the price of all this change can be high. When the unexpected becomes routine, something has to give. The stress of life affects us in the same way, whether it comes from providing care in a group home, or from listening to the sound of a lurking saber-toothed tiger from the scant shelter of a cave. Both churn up your insides and ruin your concentration, communication skills, focus, joy, and health. Staff at Orchard Village made big changes this year – their story on page 5. Pictured here – Maureen O'Nell, Shirley Loston, Gloria Gagliono and Raymond Clausson. “Coping With Change” continued page 11 The Real Scoop 2 Dedicated to Denise 3 My Friend’s Unpredictable Move 4 When the State Mandates Change 5 WhatWouldYou Tell Them? 6 The Pros & Cons of Staff Turnover 7 Management Seminars 8 Alliance Member Profile 9 The Problem Solving for Life Manual 10 Alliance Update 11 Change is the law of life. And those who look only to the past or the present are certain to miss the future. John F. Kennedy 1963
- 2. 2 Change can be hard. It can be invigorating, stimulating and challenging, but it is rarely without controversy or difficulty. Change is an integral part of today’s society and the work of the DSP is not an exception. This issue of FI looks at how some thrive while others barely survive when change comes their way. TheRealScoop From the Editors Welcome to our new question and answer column with Clifford and Seth. If you’ve ever had a burning question about the direct support profession, but were afraid to ask, here’s your chance. Fire away. Clifford and Seth can answer any question in the universe (well, almost), and they’re just waiting for your queries. Submit your question to— Susan O’Nell P.O. Box 13315 Minneapolis MN 55414 Fax 612.625.6619 Email onell001@ tc.umn.edu Please include your name, day phone, (for verification) and alias, if desired. Our first question raises the issue of the appropriateness of the lan- guage we often take for granted in our work. We hope you gain insight into your job and enjoy what Clifford and Seth have to offer. Adult Angst Dear Clifford and Seth, Is the term “adult” the most appropri- ate for individuals who cannot, due to their disability, conduct themselves as adults consistently, nor be held responsible for their behavior? – Seeking a better term Dear Seeking, “Adult” cannot just be a label that describes someone with perfect behavior, but must be recognized as a term that also includes persons with some inappropriate behaviors. A person’s behavior may be a part of what the disability is, but they should still be called an adult. Staff have to be sensitive to this, especially when they go out in public. They should decide before-hand how to deal with specific behavior problems, and should have training that helps them handle these inappropriate behaviors case by case. – Clifford Dear Seeking, I don’t know who you hang out with, but many of the adults I know without disabilities, including myself, and many others, don’t always conduct themselves appropriately. They don’t always hold themselves responsible for their actions or even care about them. So, I believe “adult” still is the most appropriate term for any individual over 18, and if they are competent to do so, they must be held responsible for their actions. Thanks. – Seth The Real Scoop DSP Q&A Frontline Initiative is a product of the National Alliance for Direct Support Professionals. The NADSP is a collaboration of organizations who are committed to promoting the develop- ment of a highly competent human services workforce that supports individuals in achieving their life goals. The following are some of those oranizations— •American Association on Mental Retardation •American Association of University Affiliated Programs •American Network on Community Options and Resources •The ARC •Association of Public Developmental Disabilities Administrators •CARF, The Rehabilitation Accreditation Commission •Council for Standards in Human Service Education •Human Services Research Institute •Institute on Community Integration (UAP), University of Minnesota •National Association of State Directors on Developmental Disabilities •National Association of State Directors of Vocational Technical Education •National Center for Educational Restructuring and Inclusion •National Center for Paraprofessionals in Education •National Organization of Child Care Workers Association •New Jersey Association of Community Providers •President’s Committee on Mental Retardation •Program in Child Development and Child Care, University of Pittsburgh, School of Social Work •Reaching Up •Self-Advocates Becoming Empowered •TASH Contact one of the NADSP co-chairs (page 11) for more information about the Alliance. Newsletter Frontline Initiative
- 3. 3 I would like to share a story about a young woman I am fortunate to work with – Denise. I have worked with Denise for over ten years. Over time we have become good friends, and in this friendship I have received many rewards for my work, even surprises and wonderful discoveries. A few years ago, I took Denise shopping for shoes and then to lunch. I told her to pick out a pair of tennis shoes she liked. After surveying the assortment in her size, she finally picked out a pair. But they cost more than she could afford. I told her this, and suggested she find another pair she liked. Again she looked around the shelves, picking through the different kinds, and found another pair that suited her and that she could afford. She took the shoes and went to pay for them. Denise gave the cashier her money. When the cashier turned to us to give back her change, however, she started to hand the money to me. I told her, “You didn’t receive the money from me. You got it from this woman.” The cashier then gave the change to Denise. Denise picked up her bag with her new shoes in it and we headed for lunch. I will never forget the big smile on Denise’s face when I reminded the cashier that she had paid for the shoes and the change should go to her. This kind of experience, which has happened many times in the ten years I’ve worked with Denise, has made my time and work very fulfill- ing and satisfying. In all the time I have worked with Denise, I had never heard her speak. Recently, I made a startling discovery. I was in her home putting dishes in the dishwasher when I heard someone say, “I done *#!*.” I turned around to see who it was. Denise was standing in the hallway. I knew that it wasn’t her, though, because I knew she couldn’t talk. I figured someone else in the home had walked by and said it, so I went back to loading the dishwasher. I heard the same phrase, again. I thought maybe that I was hearing things because I knew it couldn’t be Denise. Defying my stub- born disbelief, however, Denise said the phrase a third time when I could see it was her. I was shocked and happy. I thought, in addition to speak- ing, she had also said a complete sentence. I think she was proud of herself and wanted me to be proud of her also, which I was. Since then, she has been practicing more speech, and I let her know how proud I am of her. When I started working with people living in institutions 19 years ago, I knew I wanted to make a difference in someone’s life. That someone turned out to be Denise. I enjoy working with people. I feel my work is important not only to myself, but also to the people I am helping to learn new things, to have a more positive outlook on life, and to have a more meaningful lifestyle. I know it takes time, but with patience, you know that you are making a differ- ence and it feels good. Susan Petty is a Developmental Assistant at the St. Charles Habilitation Center in St. Charles, Missouri. Frontline Initiative runs a first- person article by a DSP about the reason they work in the field – why they do it and why they stay despite the challenges. If you would like to contribute your “Frontline Story” we would love to hear it. Issue DSP shares story of satisfaction and discovery Dedicated to Denise FrontlineStory Editor · Tom Beers Supervising Editor · Susan O’Nell Managing Editor · Amy Hewitt Board Members •Pamela C. Baker, Long Beach, MS FAAMR •Bill Ebenstein, New York, NY Reaching Up •Gina Farrer, Provo, UT Danville Services Corp. •Glenn Frick, Philadelphia, PA COMHAR-H •Sally Jochum, Lenexa, KS DSP, Johnson County Developmental Supports •James Meadours, Metairie, LA SABE •T. J. Monroe, Cincinnati, OH SABE •Cynthia Mowris, Staatsburg, NY DSP, Anderson School •Donna Ohling, Peoria, AZ AZTEC •Mark Olson, Minnetonka, MN DSP, Opportunity Partners •Rick Rader, Chattanooga, TN Orange Grove Center •Lori Schluttenhoffer, Minneapolis, MN DSP, Nekton •Marianne Taylor, Cambridge, MA HSRI •Marci Whiteman, O’Fallon, MO Self-Advocacy Coordinator •Elaine Wilson, San Diego, CA DSP, ARC If you are interested in commenting on or contributing to Frontline Initiative, or in becoming a member of the editorial board, please contact— Tom Beers, Editor P.O. Box 13315 Minneapolis MN 55414 Tel. 612.624.0060 In Each Information Denise cleaning laundry filter with support from Susan – November Editorial
- 4. 4 I would like to share with you the story of my friend Sally and how moving from a nursing home to a group home affected her life. As a cofounder of Self Advocates Becoming Empowered (SABE), I have met and worked with many people with disabilities and have fought for the inclusion of individuals in our society. Sally was no exception. I met Sally about three years ago when I got a job at the nursing home where she lived. Helping her eat was my only task. She had cerebral palsy, and had difficulty swallowing. After spending many hours with her, I discovered that the only extended time she spent with anybody else was when she was eating. It was no wonder that she enjoyed her meal- times so much. After about eight months, I decided that I didn’t want to be paid to be her friend and quit my job. I went in and told her. She didn’t understand my reason for leaving and was upset. I sat down with her and kept questioning her about her friendships. She kept telling me over and over that she didn’t have any friends. The only people in her life were her family and nurses. I had a difficult time accepting this. Finally, I asked her why she was upset: “Are you upset with me because you can’t understand why I want to be your friend — just to be your friend?” She nodded her head and began to cry. Sally had to have more friends, I decided. I suggested to her and her mother that she move into a group home. I wanted to let her know about the possibility, at least. After a year of looking, Sally hesitated to make her decision. She wanted to be able take her own furniture with her and wanted her own room. She was also afraid of how people would view her living in a group home. She overcame her apprehension, however, and decided to move to a group home in the same area where I worked. She loved it. She got her own room and was able to decorate it the way she wanted. She was treated as part of the family, and she was very happy. We were elated. One day, I went to her new home to visit her. The staff would not let me see her. I was baffled. How could this be? I went back two weeks later. Same story: “You can’t see Sally.” In my outrage, I went to our regional director and explained to her what was going on. We paid the house a visit. When we got there, the staff were surprised to see me with our director, and they let us in. We found her in bed, with sores and stiff. She had not been moved for some time, and her stretching exercises had not been done. They had been feeding her in bed, isolated from the rest of her housemates, and she had lost 40 pounds since she moved in. I insisted that she be moved out immediately. Our director informed me that there was no place for her to go; we agreed with the group home to give them two weeks to help Sally get better or find another place for her to live. Things changed for the worse. On the day that I was supposed to go back, her staff called me and said that she had turned blue and quit breathing. She had been transferred to the hospital. I went to the hospital. She turned blue two more times. Nevertheless, Sally fought back. We began to look for another place, but because of the bureaucracy, it would take too long. The group home was still able to take her back, temporarily. Our search, however, did not prove very fruitful: another nursing home was our only solution at the time, and this nursing home would only take her under the condition that she must have a gastrostomy tube inserted into her stomach for feeding. They did not want to spend the time required to help her eat. With the reluctant consent of her guardian, the proce- dure was done and Sally moved into the nursing home. She was devas- tated. Not only had she lost her hope of finding a better home, and moved back to a nursing home, but this time with even less interaction with people and without her favorite daily plea- sure — eating. This neglect should never have happened. We had thought that the move to the group home would automatically help her be more independent and she would be treated as an individual, but in this instance it turned out in disaster. Sally eventually moved from that nursing home to a home in the community with nursing care. Eventually, she passed away there. She received adequate care there from nursing staff and was treated as an individual. I visited her and took her out for dinner, bowling, confer- ences or whatever she wanted to do. Even these outings had their share of obstacles, but through persistence, we managed to get out and be a part of the community. Sally made changes in her life in order to be more involved in the community and asserted herself as an individual in it. The alternatives for homes for people in situations like Sally must improve, though, so that they have better choices and better services, and so that the change in their lives will be for the better. Nancy Ward is a self-advocate and cofounder of SABE, and serves as Self-Advocacy Coordinator for Oklahoma People First. My Friend’s Unpredictable Move Self-AdvocatePerspective
- 5. 5 Some people don’t seem too ruffled by the word “change.” They even seem to enjoy the word and all that it means. Others head quickly for ear plugs when they hear it. Although there are people who get a kick out of change, I’ve yet to meet a person who truly appreciates it when significant change is dictated to them. We at Orchard Village, an agency in Illinois that provides both residen- tial and vocational supports to people with developmental disabilities, recently went through one of those grueling experiences. The state of Illinois mandated that all agencies receiving state funds must become accredited by a nationally recognized accreditation institution within a year to continue being licensed. We had nothing against accreditation, but we didn’t like the idea of being told we had to become accredited within a certain timeframe. I’m no expert on how groups work, but I doubt that we are the only group that started the process begrudgingly. “How dare they! How can they? What will they do if we don’t comply?” After the initial temper tantrum was finished – and yes, there were others – we got down to business. Even deciding which accreditation group to use seemed like an insur- mountable task. There were several groups available to us. We could go with a group that would focus on our paperwork, and we knew that our paperwork was in good order. We could go with a group that would focus on the individual outcomes of the people we provide services to, even though we knew that we had a great deal of work to do in this area. Ultimately, we selected a group that we felt best matched our philosophy of person-centered supports. We decided to put the energy into the process that would most likely benefit the people to whom we provide supports. The training coordinator was given the role of leadership, core groups were assigned, and we were off. At times the course seemed clear, at other times, unforeseen hurdles seemed to appear in our path. I am proud to say that after less than a year of blood, sweat, and tears, we received a two-year accreditation. After the review, a group of direct support workers from the agency sat down to examine why we were successful and what we could have done better. Our greatest strength, and primary liability, was communica- tion. On the positive side, people felt that their supervisors had taken the time to discuss the changes that were coming. A formal training schedule had been developed so that everyone knew what topics would be discussed for several months. Staff talked to each other, to the people receiving services, and to their supervisors in order to work through the changes in expectations. We knew that we couldn’t make it without teamwork. On the negative side, staff initially thought the changes would be tempo- rary, like many other things manage- ment had passed down. The sense was, “Here we go again.” Everyone felt the pressure to make the change quickly. One way we could have improved our communication was to get information out as soon as it was received. At times people felt that if they knew of a change earlier, they could have started working on it right away. Gradually everyone started to understand and support the process. We were starting to practice person- centered planning, not just talking about it. A greater sense of conviction grew – this wasn’t just going to be a passing phase. We weren’t just working for accreditation, we were committing to provide better support to the people who receive our ser- vices. It was scary at first. We worried, “What will be the consequences if we don’t make it?” However, when a person who had always wanted to work with cars started volunteering at a car wash, and another person who was told that he could never use a motorized wheelchair was able to, we stopped being so concerned about making it to the accreditation finish line. What we were working toward took on new meaning. Outside of meeting the accreditation goals, we actually liked the process. We were living up to our mission and our vision in ways we hadn’t before. Nobody was thrilled to have the state order us to change. Yet, not one of us would alter what we have been through, or what we have accom- plished. Our success came from a strong commitment to what we do. We examined what had to be done in order to comply with the mandate and put it in the context of where we wanted to go. Ultimately we used the change as a tool to become stronger. The best advice we can give about how to deal with change is to look at how the change will affect the people receiving services. Use that under- standing to guide what you do. Maureen O’Nell is Residential Director for the CILA program at Orchard Village in Skokie, Illinois. When the State Mandates Change: One Agency Uses Change to Become Stronger AgencyPerspective Gradually everyone started to understand and support the process. We were starting to practice person-centered planning, not just talking about it.
- 6. 6 • Weed out those who are not suited for DSP jobs. Don’t be afraid to fire people who aren’t working out. Don’t keep workers just because you are short-staffed. • We want to live by the certification principles. Better pay, educational incentives, incentive for long-term employees. Smaller homes for clients. Pay should increase with years, performance and responsi- bilities. Christmas bonus. • Recognize my opinions and years in the field, give me some say so in how I support the individuals I work with, and also some say in how the money is spent for programs. • Form a support group within the agency for people with burn out, but who want to continue in this field. I would tell the Governor of Missouri – • Create tax incentives for businesses to hire individuals with disabilities. Professionalization of DSPs (i.e. higher wages, too). Create more state-wide and state- funded training for individual agencies that work with individual with disabilities. • Higher pay raises across the board, better benefits. • Recognize and give recognition to the work that the DSPs do in their state. Start a task force for DSPs to voice their opinions. • More funding for programs, etc., educational programs/statewide campaign to teach the public more about what we do and the people we serve. • Pass the bill for a credential for DSPs to provide a better level of care to the individuals we serve. They, too, are entitled to a higher quality of living as all human beings. I would tell the President of the United States – • There should be a nationally recognized criterion for DSPs so that your training goes with you from state to state. • We need adequate funding, and some kind of federal incentive (tax break) for people working in this field. Make sure the public is adequately educated about people with developmental disabilities. • Support DSPs. Push the state to give more incentives to DSPs. Visit different sites to show your support. • Someone should consider signing legislation into law that if you work with individuals with any type of disability there should be mandatory drug testing. • Quit making committees that talk, and create a committee that actually does something, and listens to people. I would tell other Direct Support Professionals – • Further your educational require- ments with the constant changes in the field of MR/DD. Continue to write your legislators. They do work for us. • Advocate for selves, share input and ideas. It does make a differ- ence. • Have fun while you work. Take yourself less seriously. Brainstorm for ideas to improve our job performance. DSPsSpeakOut I would tell Agency Administrators – • Create a better curriculum for seasoned employees and incentive programs for career advancement and the ideal employee. If DSPs are the backbone, they should be better educated. • We need better wages to be able to keep good DSPs in this field. Provide a shift-differential for evening and night shift. We need more positive recognition for a job well done! • We need opportunities to increase education, more contact between DSPs and administrators. They need to consult us before changes are made. They need to visit where we work more often. • Treat people with respect, and give credit where credit is due. • Listen to the direct care staff. We have good ideas. We are the people who do the hands on job. Don’t be afraid to get out there, roll up your shirt sleeves and work if needed. • It would help to tell us why things need to be the way they are: improve communication. The following are excerpts of comments from Direct Support Professionals who attended the St. Charles County Conferences in Missouri last year. Each quote is addressed to either agency adminis- trators, the Governor of Missouri, the President of the United States or other DSPs. Do these reflect any of your feelings or thoughts? What Would You Tell Them? Missouri Workers Speak Out
- 7. 7 • Come to work when scheduled. If you don’t, it puts a hardship on co-workers. See if the programs you develop work before expecting someone else to do them. Stop complaining and do the job you were hired to do. Take advantage of continuing education. • Share your experiences with your co-workers. Take the new staff under your wing and help them along. Provide encouragement- positive feedback as well as constructive criticism. Keep an open mind. View disagreements as an opportunity to learn. Don’t shut out new or different ideas. Have fun and laugh a lot! • Actually do your job! Don’t expect just to go shopping or out to eat. Our participants deserve better. Suggest activities they want to do and will enjoy. • We have to work together, and complement one another’s skills, to be the best we can to be effective. We need to be motivated to take advantage of the training opportu- nities and develop our career. • Work together in defining goals (realistic and attainable) and go to management with concerns and ask for follow-up to these concerns. Support one another. Working in the field of social services for just two years, I’ve already seen numerous staff come and go. Some opt for better paying jobs, some don’t realize exactly what they’re getting into when they start, others just get burned out. But for whatever reason, many leave. While usually thought of as a bad thing, I find that the high rate of staff turnover has both a bad and a good side. First, the bad side. The people who experience the most disruption from staff turnover are the consumers of services. Those who receive supports are affected in a number of ways, ranging from losing a friend to inconsistency with the types of assistance they receive. A lot of consumers don’t have many friends or much family contact, so they rely mostly on the staff for the human connection that we all need. Often, as soon as a consumer finds that connection in a staff person, the staff quits or moves on. Many staff do not realize the effect this has on a person. Just imagine yourself learning to trust someone, and the next day they’re gone. Then you have to start the process all over again, again, and again. I’ve worked with people who hardly ever open up or get used to staff, and I would wonder why. Now I know. Inconsistency with daily activities and disruption of routines are other problems caused by staff turnover. When I started working in the group home, many of the challenging behaviors displayed by the people who lived there increased. Why? Because changes in staff affect every part of their lives. Now the good side. One positive aspect of turnover is that new staff members bring new ideas. I worked with a staff member who came from another part of the country and the agency in which she had previously worked did things differently. Her new ideas resulted in the consumers going out to new and exciting places, and new approaches on how to respond to people when they dis- played undesirable behaviors. After this new person started, you could definitely see a change for the better in the people to whom we provided supports. Another positive side of staff turnover is that people who feel burned out leave. In this field, when staff gets burned out, the consumers suffer most. When the staff do not enjoy what they’re doing, enthusiasm drops, job performance declines, and consumers lose essential support. Although turnover has a positive side, it is definitely too high. In the two years that I’ve been in this field, I’ve seen many different faces come and go. In fact, of the entire group I trained in with two years ago, only two (including myself) of about twenty still remain. People had various reasons for leaving: some found better jobs, some needed more money, others went back to school, etc. Whatever the case, this rate of turnover greatly influences the lives of the people who receive supports and many staff probably do not realize how much their departure affects people’s lives. As we look to the future in providing services, we must give staff better alternatives. There will always be turnover, but if staff are leaving for reasons we can control (esteem, co-worker difficulties, better opportunities), we can decrease the rate of turnover, and the people who receive their services will have better lives. R.E. Scott, Jr., is a DSP for ARC in San Diego, California. The Pros and Cons of Staff Turnover DSPPerspective
- 8. 8 In order to promote the participa- tion and acceptance of individuals with disabilities in the community, support professionals must know how to help people plan desired lifestyles, teach needed skills, and communicate effectively with families, profession- als, and other community members. Using highly interactive training methods, the Quality Service and Support (QSS) seminars offered by the Center for Disabilities Studies in Delaware examine current concepts and practices in the support of individuals with disabilities. The QSS Certificate Program consists of 78 hours of classroom study during the fall and spring semesters. The following are some of the topics covered by the seminars— • Lifespan Issues in Developmental Disabilities — examines the major events that all individuals face over the course of a lifetime while highlighting special issues confronted by people with disabilities and their families. • Families — profiles how disabili- ties commonly effect families. • Effective Communication — discusses the variety of ways we communicate, with and without words. • Community and Natural Supports — overviews natural supports, the often unused resources available in local communities. • VocationalTraining — surveys and evaluates diverse models of vocational support including competitive, supported, and sheltered work. • Recreation and Leisure — explores aspects of life that are often overlooked by traditional program- ming. • AssistiveTechnology — surveys applications of technology in the support of people with disabilities in the areas of communication, mobility, and self-care. For the development of manage- ment and supervisory skills, the center also offers the Quality Manage- ment and Supervision in Human Services (QMS) Certificate Program. This program will offer the newly promoted manager or supervisor a framework of management techniques that will assist in the transition from a staff position to a formal position of responsibility and leadership. In order to receive a QMS certifi- cate, participants must attend 18 seminars and colloquia for the fall and spring semesters. Individual modules may also be attended on an open-enrollment basis by anyone not interested in obtaining a certificate. The QMS Seminars include— • Introduction to Supervision — examines the basic skills of management, supervision and leadership that human service managers need to manage success- fully in a changing environment. • Morale and Motivation — profiles proactive and reactive strategies that enhance the work environ- ment in ways that affect morale and motivation favorably. • Coaching — explores techniques used by good coaches to get average employees to do excep- tional work. Delaware Center Offers Seminars for Support and Management • Working withYour Boss and Other Professionals — examines the importance of establishing solid relationships with bosses and other professionals. • Counseling and Disciplining — teaches counseling and discipline skills related to employee miscon- duct, and outlines the progressive steps necessary for termination. • Budgeting — teaches budget skills including reading and creative budgets. For more information on these programs, contact Beverly Stapleford at 302.831.4688 or email beverly.stapleford@MVS:UDEL:EDU. EducationInitiative
- 9. 9 The American Association on Mental Retardation (AAMR) was founded more than 120 years ago in Media, Pennsylvania, when six pioneers met to discuss the future of a new field. From that meeting came a vision and direction that has evolved into the AAMR of today, an association which has more than 9,500 members in the United States and 55 other countries. To accommo- date the diverse interests of mem- bers, AAMR has nine Special Interest Groups, including one for Direct Support Professionals, and 16 divisions which include such areas of interest as Community Services, and Leisure and Recreation. The Association’s basic mission is to increase the knowledge and skills of individuals working in the field of mental retardation and related developmental disabilities by exchang- ing information and ideas. It strives to enhance life opportunities for people with disabilities and their families by promoting progressive public polices, new research opportu- nities, and services that support individual choice and human rights. Current goals of AAMR include the following: (1) promoting high-quality services and supports that enable full community inclusion and participa- tion, (2) advocating for progressive public policies, (3) expanding the capacity of organizations, (4) promot- ing research and its dissemination and application, (5) influencing public awareness and attitudes, and (6) promoting the human rights and dignity of people with mental retarda- tion and related disabilities. Services offered by AAMR include publications, education and training programs, annual conventions, leadership development opportunities, public education, and advocacy. Among its publications are important books such as Quality of Life, mono- graphs, training manuals, fact sheets, a useful newsletter entitled News & Notes, and Innovations. Innovations is a popular new series that translates ground-breaking research in areas such as vocational training and behavioral support into practical information. The Association’s periodicals, The American Journal on Mental Retardation and Mental Retardation, are among the most respected journals concerning people with mental retardation in the world; six issues of each are published annually. The Association's chapters and regional units sponsor meetings and training sessions. The national organization holds an annual conven- tion each May which attracts more than 2,000 people from all over the world including 700 speakers, many of whom speak about direct service issues. The AAMR Training Institute sponsors workshops on timely topics such as managed care, leadership training, and ethical challenges. In early December, there is an Annual Public Policy Forum in Washington, D.C., where recent policy changes and future directions are discussed. The Association is a member of the Consortium for Citizens with Disabilities and works in Washington, D.C., in support of positive disability legislation and improved regulation. It also serves as amicus curiae (or advisor) to the courts as the need arises. A major challenge facing our disability service network is attracting and keeping a well-trained, committed workforce. We continue to be plagued by high turnover, low wages, and increased competition for workers. The Association has been involved in workforce issues for decades. In fact, at AAMR’s 43rd Annual Meeting in Chicago in 1919, staff shortages due to low salaries was a major issue. Over the years, AAMR has played an important role in supporting workers by providing skills training and promoting leadership development. Recently, in addition to creating the AAMR Special Interest Group for Direct Support Professionals, the Association restructured its member- ship categories and actually reduced the cost of dues so that workers with limited incomes could afford to join and benefit from the many fine AAMR programs. Furthermore, AAMR has actively supported John F. Kennedy, Jr.’s worker initiative “Reaching Up,” and helped to create the National Alliance for Direct Support Professionals. We have done this because we recognize the long-term viability of our field is dependent upon a stable, well-trained workforce. It will take many people working together in many different ways to achieve this important goal. Such cooperation is essential, however, if we are to achieve our vision of an improved quality of life for people with disabili- ties in our society. American Association Alliance Member Profile: on Mental Retardation AllianceMemberHighlight The association’s basic mission is to increase the knowledge and skills of individuals working in the field of mental retardation and related developmental disabilities by exchanging information and ideas. Additional information about AAMR may be obtained by calling 800.424.3688 or by visiting our web page at http:www.aamr.org. Doreen Croser is the Executive Director of AAMR in Washington, D.C.
- 10. 10 A major part of the Direct Support Professional’s job is to help people with disabilities build commu- nity connections. One of the difficul- ties faced by both DSPs and consum- ers is the dependency that has been built as many people receiving supports have learned to rely on DSPs to make decisions for them. In order to be safe and enjoy the community fully, people need skills in how to use their own judgment. The Problem Solving for Life Manual, developed by the Learning for Life training project at the Center for Development and Learning at the University of North Carolina at Chapel Hill, provides session-by- session instructions on teaching problem-solving in a group format. The program was designed to teach individuals with developmental disabilities how to handle common problem situations. The sessions focus on five easy problem-solving steps that are taught primarily with role- play and visual aides. The sessions include lots of repetition and partici- patory activities to help individuals at various levels of cognitive functioning to learn the concepts. One of the main premises of the curriculum is that problem-solving skills are essential for community living. Recent interest in mental health issues in persons with mental retardation has called attention to difficulties in daily problem solving. Controlling anger and frustration in social or interpersonal situations is important for social adjustment at home and work. For many people with developmental disabilities, the lack of problem-solving and social skills poses serious obstacles for job success and community living. Acquiring interpersonal skills enables people to choose appropriate solutions in frustrating, anger-arousing, and puzzling social situations. The Problem Solving for Life Manual uses a format that allows individuals with disabilities to participate. Active learning methods involve the participants and provide opportunities to run parts of each session. Visual aids and role-play help students with limited language skills understand the problem-solving concepts. The role-play situations are taken from real life, the scenarios are very simple, and they can include as much or as little dialogue as the participants wish to use. The sessions include plenty of repetition to help participants learn and remember the information. The manual delineates five problem-solving steps— 1. Relax and take a deep breath. 2. Use a positive self statement (say something nice to yourself). 3. Identify the problem. 4. Think of solutions. 5. Choose and use a solution. These steps are presented one at a time, with several sessions for practicing each step before a new one is added. The manual provides directions to help instructors explain each step in a simple way. The problem-solving manual is meant to be adapted to meet indi- vidual instructor’s needs. Past instructors have added their own creative touches (which have been noted in the manual as additional ideas). The program can be easily integrated into other curricula, and once the basic problem-solving steps are mastered, this modified format can be used for teaching more specific problem-solving skills (e.g., using public transportation, cooking, buying groceries, budgeting, etc.). The manual is currently in a draft form and not available for distribu- tion, but it is possible to pilot it at different sites. For more information on this manual, contact — Irina Paraschiv University of North Carolina CB#7255 Chapel Hill, NC 27514 Tel. 919.966.4846 Fax 919.966.2230 Email iparaschiv@css.unc.edu No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro This book is an investigation of the lives of people with disabilities and their political awakening in America: a growing civil rights movement that no longer accepts the ignorant prejudices of our society. Shapiro delineates the history of a developing self-consciousness over four centuries of American life, dispelling the myth of the tragic disability for both those with and without disabilities. Published by Times Books, a division of Random House, Inc., New York, ISBN: 0-8129-1964-5, and can be found or ordered at local booksellers. Youth Today This nationally distributed, bi- monthly newspaper published by the American Youth Work Center in Washington, DC, features a wide range of the latest strategies, policies, resources, and issues relating to youth and the DSPs who work with them. For more information, contact Youth Today, American Youth Work Center, 1200 17th St. NW, 4th Floor, Washington, DC 20036-3006 or call 202.785.0764. The Problem Solving for Life Manual FrontlineResources
- 11. 11 DSPs already have more than their share of stresses: mounds of regula- tions, varied family expectations, a skeptical community, murky job descriptions, compartmentalized professionals, inadequate training, and financial hardship. When you add the dynamics of change to the cauldron, you begin to stir up a stressful stew. Change is difficult because it usually involves loss and disruption. We are creatures of habit and even if the change is a positive one and will eventually prove worthwhile, the transition is stressful. Change can involve a loss such as being displaced from our social support system when moving from one group home to another, or new expectations such as being required to input data on a computer when you’re used to writing reports or filling out forms by hand. Take Carla, for example. She is a DSP who worked for over 15 years in a group home where eight people lived. She transferred to a supported living environment where two of the eight men she previously worked with had moved to share an apartment. While she knew the improved living conditions and opportunities for those two men were important, she started to dread coming to work each day. She missed the interplay of the diverse personalities of the eight guys with whom she had become so familiar. In the past, if she had difficulty relating to one of the house members, she had seven others to relate to. In the new setting, she felt these opportunities were limited. She realized she was more comfortable in a larger setting. After struggling for 6 months, she left the agency and the field. Then there was Bryson, an area supervisor in a sheltered workshop AllianceUpdate The Alliance and its members have been extremely active in bring- ing attention to the issues faced by Direct Support Professionals through- out the United States. Activities supported or influenced by the Alliance have included: (1) the PCMR publication Opportunities for Excellence: Supporting the Frontline Workforce; (2) presentations at numerous national and state confer- ences regarding direct support issues; (3) the publication and dissemination of Frontline Initia- tive, a national newsletter for Direct Support Professionals; and (4) provision of technical assistance to agencies and states regarding direct support recruitment, training, and retention. The Alliance has several commit- tees and work groups actively working to implement strategies designed to achieve the five Alliance goals — 1. Enhance the status of Direct Support Professionals. 2. Provide better access for all Direct Support Professionals to high quality educational experi- ences (e.g. in-service training, continuing and higher educa- tion) and lifelong learning, which enhances competency. 3. Strengthen the working relation- ships and partnerships between Direct Support Professionals, self-advocates, other consumer groups and families. 4. Promote systems reform, which provides incentives for educa- tional experiences, increased compensation, and access to career pathways for Direct Support Professionals through the promotion of policy initia- tives (e.g. legislation, funding, practices). 5. Support the development and implementation of a national voluntary credentialling process for Direct Support Professionals. To share your ideas, volunteer to participate in a work group, learn more about developing a local initia- tive, or for general information regarding the National Alliance for Direct Support Professionals contact one of the following co-chairs— Amy Hewitt Institute on Community Integration University of Minnesota 204 Pattee Hall 150 Pillsbury Dr. SE Minneapolis, MN 55455 Tel. 612.625.1098 Fax 612.625.6619 Email hewit005@tc.umn.edu Seth Krakauer Direct Support Professional/ Kennedy Fellow, AHRC 446B 124th St. Rockaway Park, NY 11694 Tel. 718.474.4103 James Meadours Self Advocates Becoming Empowered 3321 Edenboren Ave., Apt. 315 Metairie, LA 70001 Tel. 504.888.0134 Email fhfgno@ix.netcom.com on the Alliance The National Alliance for Direct Support Professionals promotes the development of a highly competent human services workforce which supports individuals in achieving their life goals. Update Coping With Change, continued from page 1
- 12. Frontline Initiative Newsletter P.O. Box 13315 Minneapolis, MN 55414 t Address Correction Requested where 75 people with developmental disabilities assembled food trays for an airline caterer. Bryson was with one agency for six years and enjoyed the challenge of weaving together social, vocational, and education experiences for the people who worked there. When the workshop model was changed to a community integration model, the 75 workers were dispersed to over 20 different work settings, providing them with new opportunities. Bryson found that he needed a new set of skills to work effectively in this new setting. He became coordinator of the program and embraced the added challenge of preparing and supporting not only the people he already knew, but also the workers at new sites. It was an opportunity he would not have had if nothing had changed. Both examples illustrate typical changes now being felt throughout the field of support services for people with disabilities. They demonstrate how two people respond to a complete upheaval of their roles, needs, and skills. Most scenarios of change don’t result in such cut-and-dried responses of either thriving or leaving, but rather represent peaks and valleys of reception and rejection attitudes. All changes reflect a loss and win situation. Because it is likely that change will always be part of this field, a DSP who can be flexible and open to new opportunities will do the best. The following are suggestions for coping with changes experienced by DSPs– • Keep abreast of the thought shifts in the profession. Prepare for the inevitable changes in the scope and focus on providing supportive care. Try and keep from being blind-sided by changes you never saw coming. • Learn new skills. Familiarize yourself with new technologies, philosophies, people skills, collabo- ration efforts and research tech- niques. Learn to use the tools of change. • Equate change with opportunity.Look to see how you could contribute to the successful transformation that change inspires. A positive attitude usually prefaces a positive performance. • Initiate change. Instead of being an innocent bystander of change, be an agent of change. Take a critical look at how things are done at your agency or throughout the profession and make suggestions to improve outcomes. Eric Hoffer observed in his book The Ordeal of Change, “In human affairs, the best stimulus for running ahead is to have something we must run from.” And Remember–“Nothing is permanent but change.” –Heraclitus, 500 B.C. Rick Rader, M.D., is Director of the M.J. Kent Habilitation Center in Orange Grove Center, Chattanooga, Tennessee and is a Fellow of the American Institute of Stress. Nothing is permanent but change. Heraclitus, 500 B.C. Frontline Initiative will be made available in alternative formats upon request.