Letter from the President Ann Turnbull Dear Colleagues, This will be my last letter as President, and I want to take this opportunity to communicate with you on the topic that is my top professional priority which is family quality of life. At the AAMR annual meeting in Philadelphia, my Presidential Address on Thursday afternoon, June 3 will address this topic. The title of that address is “Wearing Two Hats: Perspectives on Family Quality of Life”. In this talk, I will share thoughts about the essence of family quality of life from my perspective as a researcher who focuses in this area, as well as from my dual perspective of being the parent of a young adult with intellectual and mental health disabilities. For now, I want to share some of the findings from the Family Life Strand of the National Goals Conference held last year through the leadership of The Arc of the United States with over 20 sponsoring organizations, including AAMR. One of the most exciting aspects of the National Goals Conference was that many stakeholders – self-advocates, family members, researchers, policy leaders, service providers, and administrators – came together in 12 “strands” for intensive work focusing on our nation’s “policy promises” to individuals with intellectual and developmental disabilities and their families. The stakeholders in each strand also analyzed the current knowledge base, made recommendations for future research, and made recommendations for future knowledge utilization. In this letter, I will highlight the key findings from the Strand on Family Life. Overarching Goal and Five Associated Goals Based on a thorough analysis of national legislation and Supreme Court decisions, the Family Strand identified a single overarching policy goal and five associated goals reflecting our country’s “promises” to individuals with intellectual and developmental disabilities and their families pertaining specifically to family life. These goals are as follows: Overarching goal: To support the caregiving efforts and enhance the quality of life of all families so that families will remain the core unit of American society. Goal A: To ensure family-professional partnerships in research, policy-making, and the planning and delivery of supports and services so that families will control their own destinies with due regard to the autonomy of adult members with disabilities to control their own lives. Goal B: To ensure that families fully participate in communities of their choice through comprehensive, inclusive, neighborhood-based, and culturally-responsive supports and services. Goal C: To ensure that services and supports for all families are available, accessible, appropriate, affordable, and accountable. Goal D: To ensure that sufficient public and private funding will be available to implement these goals and that all families will participate in directing the use of public funds authorized and appropriated for their benefit. Goal E: To ensure that families and professionals have full access to state-of-art knowledge and best practices and that they will collaborate in using knowledge and practices. Knowledge Base For each of these six policy goals, the Family Strand members conducted a review of the research literature and identified 5-8 studies that encapsulate the current knowledge available pertaining to the substance of each goal. The Family Strand authors organized a table to highlight key research studies. This table had a section for each of the six goals. You can click table sample to review the studies identified relating to the overarching goal of enhancing quality of life of all families. Key trends relating to the knowledge base were identified as follows: Research has demonstrated the benefit of family support through parent-responsiveness training, parent behavioral training, positive behavior support, cognitive-behavioral stress management, parent-to-parent support, deinstitutionalization, respite care, cognitive coping, family enrichment, family therapy, family advocacy, person- and family-centered action planning, and eco-behavioral interventions. Research has generally focused on European American families with middle class socioeconomic levels, and there is a need to ensure that families from culturally and linguistically diverse backgrounds are sufficiently included in family research. Recommendations for Future Research There was generally consensus within the Family Strand that it is especially important to conduct family research with families as contrasted to on families. Group members affirmed the value of participatory action research in which researchers and the intended beneficiaries of research (in this case families) partner through all phases of research starting at the point of formulating important questions to address and then working through data collection, data analysis, dissemination, and knowledge utilization phases. For the overarching goal of enhancing family quality of life, the family strand members recommended the following nine research questions as important ones to be addressed in future research studies: How and to what extent can we improve the quality of life for caregiving families by supporting the processes that lead to positive adaptation and positive perceptions of families across the lifespan? What policy changes consistent with the overarching goal do families recommend and what will be the specific impact of policy on family quality of life outcomes? How can family quality of life outcomes most effectively be used as criteria for monitoring and evaluating agencies that provide services and supports to families? How can family quality of life differ across families with varying characteristics, including marital status, racial/ethnic background, income, and community type? What are the most advantageous ways for determining individual family preferences for services and supports that can enhance family quality of life outcomes? What alternative approaches are most appropriate to use in combining the responses of individual family members on outcome measures into a composite family score? How does a composite family score differ from the individual scores of the primary caregiver? What is the relationship between caregiver satisfaction, caregiver burden, and satisfaction with family quality of life for families across the lifespan? Recommendations for Future Knowledge Utilization In addition to making recommendations on the relevant substantive focus of research, recommendations were also made on how the field might do a better job of using knowledge to “keep our policy promises” to individuals with disabilities and their families. Key recommendations include: The current knowledge base related to best practices in family support, mostly in the form of state policy evaluations need to be analyzed to identify best practices and “lessons learned”, made accessible to others developing programs, and extended into more rigorous evaluation and research models. The knowledge base on family support should be translated into performance standards to reflect evidence-base practices. Dissemination of knowledge to every day users – families, service providers, policy leaders, and program administrators – should be done through technology-based clearinghouses so that information is easy to understand and points people to effective action. New models are needed for distribution of knowledge to neighborhood venues such as family-directed service agencies and offices of practitioners who are in daily contact with families. Real Lives What does all of this mean for families’ real lives? Overview of family challenge. Jerome Davis is the 15-year old son of Elizabeth and Charles Davis, African-American citizens who live in the inner city of a major metropolis. Jerome has autism. His father, Charles, works in an automobile manufacturing plant. His mother, Elizabeth, used to work in the family’s church as secretary and financial officer, but she has had to leave her job to care for Jerome and the family’s new grandson, the child of Jerome’s older sister and her husband, both of whom work. The Davis’ income places them just above the federal poverty level, and Charles’ employer-sponsored health insurance program has exclusion provisions that bar reimbursement for many of Jerome’s therapies. Jerome’s disability and the failure of his schools to implement positive behavior support in his IEP are contributing to his problem behavior and cause him to be increasingly placed out of the general education program at school. At his many IEP conferences and at other meetings with his teachers, Elizabeth is often confused by the technical terms the teachers use. When she asks why Jerome continues to be suspended or “asked to go home,” the faculty tell her they are doing their best. Having attended some local parent-support programs to learn what Jerome’s rights are and what resources may be available to his family, Jerome’s sister Danielle says his teachers are not using the best possible techniques for working with him. She wants to come to the school meetings despite the fact that his teachers say she is not allowed to be there. She also is upset that her parents are paying a private therapist to do what the schools are required to do—to assess why Jerome behaves the way he does and to intervene so he will not be sent to the “alternative education” program far from his home school. Elizabeth continues to raise a fundamental question: “What will become of my brother once he leaves high school? Where will he work and live? Does anyone here plan for his future, or do we just take him back home, like some baby, which he won’t be?” How research can enhance the quality of life for Jerome and his family. Jerome’s transition to adulthood did not depend entirely on his mother Elizabeth, his father Charles, and his sister Danielle. Nor did it end with his commitment to a state institution or the criminal justice system. That tragic trajectory, so common for so many other 16-year old students with problem behavior in a school system that values discipline over education and that is “free at last” (in the words of a school board member) of the “restrictions” of Individuals with Disabilities Education Act, was averted because Jerome’s teachers, prodded by his sister Danielle, decided to challenge the “old paradigm” and to adopt the “new paradigm” of disability—the one that says that the world has to change to accommodate Jerome, even as he learns how to fit into the world of his home community. In challenging the status quo, these courageous teachers—the “advocates,” they called themselves—were joined by Elizabeth, Charles, Danielle, and a host of family members and friends of the family. Among the most important reliable allies were the directors and staff of a community-based parent resource center. “We’re into empowerment and leadership development,” said the co-directors of that center. “We know where families want to be and what the outcomes of policy and services should be, but we didn’t know exactly how to get there because we didn’t have the information we needed about the behavior of Jerome and other students like him. The answer, thankfully, is that we became partners with a consortium of universities that conducted research on positive behavior support and that partnered us in their research, from the very beginning. We provided the ‘living laboratory’ – the students, families, and schools, and they provided the research power—systematic procedures. And neither we nor the researchers could have made much of a difference without the ‘advocates.’” The result of that multi-member partnership was remarkable. Instead of offering special education alone, Charles’ teachers secured his effective participation in the general curriculum of his school. In place of punishment and exclusion, they used positive behavior support, and they enlisted his family and members of his home community in using that approach, too. Instead of just “dropping” Charles at the door-step of the local developmental disabilities service agency, his teachers and his family and their friends became partners in a long-term, person- and family-centered planning process. The plan’s ultimate goal was that Charles will receive “self-determination” funding under the “Independence Plus” Medicaid option. They kept uppermost in their mind Jerome’s oft-repeated statement, “Momma, I don’t want to be a baby any more. I want to be my own man.” Subsidiary goals included his work for the local veterinarian, a job that pleased Charles because he delighted in taking care of the small and large animals. It also provided him with health insurance that, when combined with his Medicaid funding, reimbursed all of his therapies and medications. A strange thing happened to Jerome on his way to adulthood. One of the other assistants at the veterinarian’s—an older man partially disabled by toxic fumes in the first “Gulf War”—became Jerome’s mentor, connecting him with the independent-living movement in their city and linking his family with a political-action organization concerned with not just disability issues but with neighborhood revitalization and citizen control of public services. By the time Jerome left school at the age of 21, services at school and in the adult agency and independent living movement targeted not just him but also his family and its support needs. Jerome was enrolled in the self-determination option under the Medicaid Independence Plus option, ensconced in his own apartment near his family’s home, and elected to the governing board of the local family-directed Community-Based Parent Resource Center. His mother Elizabeth had secured an appointment to the staff of the city councilman from her district; his father had been appointed to the state special education advisory committee; and both Jerome and his parents had received computers—a gift of the local disabled-veterans’ organization—to use at home so they could stay current on the research about family support and independent living and also constantly monitor and lobby their elected and appointed federal and state representatives. Jerome’s “don’t want to be a baby any more” is now replaced by “Momma, I’m a full citizen, now,” to which his father Charles adds, “Yes, and so are we all.” But it is Elizabeth, ever the not-fully-satisfied member of the family, who has the last word. Speaking about the partnership among her family, Jerome’s providers, the community-based parent resource center, and the research consortium, Elizabeth stated “our lesson” in less than the proverbial twenty-five words: “Knowledge is power only if the knowledgeable act powerfully and the powerful act knowledgeably.” Closing In closing, I will only reiterate Elizabeth’s lesson: “Knowledge is power only if the knowledgeable act powerfully and the powerfully act knowledgeably.” In the area of family support, as well as on all other relevant topics, research provides an opportunity for informed decision making moving toward the goal of family quality of life. I hope to see you at the “Presidential Address” where I will address family quality of life in much more depth sharing examples of lessons learned – sometimes painfully and sometimes joyfully – from my own family. Because this is my last opportunity to communicate with you in this format, I want to say what a privilege it is for me to serve as President of AAMR, and I look forward to devoting my continued efforts toward reaching all of the promises that our country has made to individuals with intellectual and developmental disabilities and their families. Respectfully, Ann

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