Work Group on Community Living: Who We Are
The United States has reached a watershed moment. The Baby Boom is rapidly becoming the Elder Boom, and people with lifelong disabilities are living much longer. If cost-effective long-term supports, policies and programs are not crafted, these groups may lose the community-based supports and services essential to avoid institutionalization. Particularly vulnerable groups include people with a disability present from birth or that arose by midlife who now are entering their later decades of life. However, because of research gaps and a dearth of best practice knowledge, human service professionals are largely unprepared to help this population remain independent and active in the community.
Formed in the Spring of 2015, the KU Work Group on Community Living (WGCL) brings together the expertise of researchers at the University of Kansas who have built four specialized programs to benefit people with disabilities and older adults. These programs are: The Research and Training Center on Independent Living (RTC/IL), the Center for Research on Aging and Disability Options (CRADO), the Institute for Health and Disability Policy Studies (IHDPS), and the Kansas University Center on Developmental Disabilities (KUCDD). The mission of WGCL is to develop and study innovations related to the needs across the lifespan of Americans who have lifelong or early onset disabilities. Our overall aim is to maximize their well-being and independence. We highlight the unique strengths of each Work Group member below.
The Research and Training Center on Independent Living (RTC/IL) has a 35-year history of research designed to enhance Independent Living (IL) for people with disabilities. Research and training projects bridge local, state and national levels, with a commitment to participatory action research and partnership with community-based agencies that support people with disabilities. Areas of emphasis are community living and participation, health care access, secondary health conditions, emergency preparedness, and disability policy. The center’s current project on community living for people with disabilities conducts interventions on housing advocacy, home visitability, building community capacity for centers for independent living (CILs), health promotion assistance, access to recreation, and training for informal (unpaid) personal assistants. In addition, secondary data analysis related to community living provides information for policymakers. Recent projects focus on health disparities among people with disabilities, access to housing, and vocational rehabilitation.
The Center for Research on Aging and Disability Options (CRADO) in the School of Social Welfare (SSW) has been long recognized as a leader in applied research to improve long-term supports and services policy and practice. The KU SSW is the conceptual home of the strengths perspective, and CRADO has pioneered application of the strengths-based approach to the provision of community-based long-term supports and services. CRADO has specialized in conducting studies and developing interventions to help maintain independence and quality of life for people with disabilities at times of transition. Researchers have used large state (Medicaid) and federal (MDS) databases to conduct longitudinal research on diversion from Nursing Facilities. CRADO has also done extensive research on mental health needs of both institutionalized and isolated community-dwelling older adults with physical disabilities and their access to services. We also help educate future social workers.
The Institute for Health and Disability Policy Studies (IHDPS) brings expertise in employment incentives, program evaluation, survey design and administration, mixed methods, and health care policy to the project. The mission of the Institute is to conduct timely and meaningful research and evaluation to inform health and disability policy, with the goal of improving access to and quality of care for all people, particularly for those with disabilities and chronic illnesses. The Institute’s research has demonstrated that employment is a health determinant and that the ability to accumulate assets above usual federal limits is associated with better health and quality of life for people with disabilities. IHDPS’s work has also included determining whether the move toward increased use of managed care results in diminished access to care for people with disabilities. Their research on the implementation of Medicaid managed care identified multiple problem areas.
The Beach Center on Disability and the Kansas University Center on Developmental Disabilities (KUCDD) are home to international leaders in the development of theoretical frameworks, assessment tools, and interventions to promote self-determination and promote school and community inclusion, particularly for people with intellectual and developmental disabilities and their families. Beach Center/KUCDD researchers have developed widely adopted assessments of self-determination as well as interventions (i.e., the Self-Determined Learning Model of Instruction and the Self-Determined Career Development Model, Self-Determined Healthy Lifestyles Model) to promote skills associated with self-determination (goal-setting, problem solving) that have been linked with the attainment of valued outcomes, including enhanced self-determination, employment and community participation. Beach Center/KUCDD researchers are exploring the impact of self-determination on employment outcomes, are part of the National Resource Center on Supported Decision-Making (funded by ACL), and are authors and developers of leading support needs assessment tools, including the Supports Intensity Scale-Adult Version and Supports Intensity Scale-Children’s Version.
The exceptional strengths and capacities of the work group members places WGCL in a unique position to study and develop interventions for people who are aging with lifelong and early onset disabilities. We are experts in community-based participatory research and propose to conduct research at individual, community, state, and national levels. Studies will center on three major areas outlined in the Administration for Community Living strategic plan: Advocacy; Self-Determination and Control; and Long-term Services and Supports (LTSS). Initial research will focus on understanding the supports and services individuals aging with a disability need to remain healthy and active in both rural and urban communities, particularly at times of transition. We will examine the intersection of disability, health and employment across the lifespan, the supports needed for decision making, and impact of managed LTSS on these groups. Crafting effective interventions based on our research and motivating their adoption is our ultimate intent.