1. Project conducted with support from JFK Partners, University of Colorado Health Sciences Center, Corey Robinson, Director Aging Families of Adults with Developmental Disabilities: Needs and Service Alternatives S. H. Qualls Department of Psychology and Center on Aging, University of Colorado at Colorado Springs Aging with Developmental Disabilities: Normative Challenges Aging is the phase of the life cycle that has received the least attention from providers of services to adults with developmental disabilities. Unique physical health problems: Social and work contexts: Absence of retirement and leisure planning; Friendship networks tied to formal life structures (e.g., work, housing) Age-related cognitive deterioration processes (Janicki, et al., 1999; Walsh, et al., 2001). These challenges can create psychological distress for the individual or family members that can lead to a dual diagnosis of mental disorder and mental retardation for the first time in later life. Age-related changes also can lead to rapid decisions to institutionalize a person who has lived successfully in the community for their entire life, a transition that can be traumatic for the person with developmental disabilities (Essex, et al., 1997). Family Systems Families Structures Parents are the primary caregivers Siblings …. Families continue to provide strong support ( ) Developmental Transitions in Later Life Parents become unavailable to provide care or oversight because of frailty or death Adult with disability shows age-related deterioration that affects daily life structures (Roberto, 1993) Impact of Transitions on Person with Cognitive Disabilities Distress for parents who fear for the well-being of adult child when parent can no longer provide care Increased probability of institutional placement that disrupts life structures for person with disability Sibling role confusion ( ) Planning Ahead A key variable in how family members adjust to age-related changes is how the family system anticipates, accommodates, and responds to the changes. The willingness of aging parents of adults with developmental disabilities to consider the future impact of their own frailty and death on the life of their dependent child influences outcomes for the person with disabilities (Seltzer, et al., 1997). Families who plan ahead have the opportunity to prepare for anticipated changes using alternatives consistent with their values, preferences, and resources. Families who do not plan leave their member with disabilities vulnerable to institutional placement as the likely alternative. Research Questions 1)How do aging processes challenge consumers, families, and service providers? 2)What programs have emerged in Colorado to address age-related challenges? 3)What services are needed to support consumers, families, and service providers to persons with cognitive disabilities? 4)What formal and informal linkages exist among service providers to persons with cognitive disabilities? National Models of Support for Aging Families Education Supportive Problem-Solving Family Planning Family Counseling Needs Assessment: Support for Aging Families (Current Project in Progress) Survey of Providers Participants Program staff at Community Center Boards, ARC offices, P&A Survey Instrument Semi-structured format focusing on: What challenges are faced uniquely by your older adult clients with developmental disabilities? What would help you meet the needs of your older adult clients with developmental disabilities? What programs do you have in place that focus specifically on older adults? Have you adapted existing programs in any way for older clients with developmental disabilities? In providing services for older adults, with what other service delivery programs do you work closely? How do you communicate with those providers? Focus Groups of Clients and Families Participants Family members Consumers Providers (primary care physicians, mental health center geriatric team, day programs, DD employment programs, contractors of in-home services) Topics Questions focus on their awareness of changes with age, concerns about aging processes, thought/concerns about family transitions References