The Gift of Time: The Intersection of Aging and Lifelong Disabilities

1. The Gift of Time: The Intersection of Aging and Lifelong Disabilities Conference on Independent Living, June 10, 2010 Edward F. Ansello, Ph.D. Virginia Center on Aging Virginia Commonwealth University eansello@vcu.edu(804) 828-1525 www.vcu.edu/vcoa

2. Things are seldom as easy as you’ve been toldNor as difficult as you’d feared The Chronicles of Ed

3. Overview • Gift of Time: The Phenomenal 20th Century • New reality of aging with lifelong disabilities; major reasons and consequences • Common links between systems: invisibility, strained resources, inadequate geriatric triangulation, family caregivers • Differences between currently older (50+) and younger adults with ID/DD

4. Overview • Challenges and Opportunities • Common focus: Family caregivers need the “Three Rs” • Intersystem coalitions in practice • Keys to making coalitions work

6. The Future Ain’t What It Used To Be • Increased life expectancy is affecting both lifelong and late-onset disabilities • Our “consumers” are drawing us toward intersection • We don’t want a crash • We want to work smarter not harder

7. Unprecedented Changes in “The Way It Used to Be” • Wide broadcast of the “gift of time” • Decreased mortality across later life • Increased numbers with disabilities in later life, but prevalence may be down • Prolonged survival with late-onset disabilities • Increased survival with lifelong disabilities • Human development and the process of individuation

8. A Snapshot • The number of older (60+) adults with lifelong, developmental disabilities is growing, accounting for at least 1 in 100 today. “The DD Umbrella” • Most older adults with intellectual disabilities live in the community with their families • Two-generation geriatric families are becoming the norm for currently older adults with developmental disabilities

9. An Appraisal of the Status Quo • Chronic care by families is a value common to the fields of aging and disabilities, lifelong and late-onset • Older parents caring for aging children are being “discovered” by the Area Agencies on Aging (AAAs) • Plans for continuation of care tend to be absent or need assistance

10. An Appraisal of the Status Quo • These families tend to value their independence, underutilize existing resources, and fail to make permanency plans • The aging and developmental disabilities systems of researchers, educators, and providers have little history of meaningful interaction • There are examples of intersystem cooperation that may serve, wholly or in part, as models

11. Common Links • The thrust in both aging and disabilities is toward more and more local arenas of operation • Human services agencies regularly face shortages in good economic times and in bad • Client “invisibility” • Inadequate geriatric triangulation • Family caregivers • Client health/well being

12. Common Obstructions • Misunderstandings across networks/disciplines • Network/discipline jargon • “Regulations” (e.g., liability !!) • Funding requirements • Fear of losing (defending “turf”)

13. The Two-generation Geriatric Family Comes of Age • Four-generational families • Two-way assistance with lifelong and late-onset disabilities • Impact of family caregivers on longevity of care recipients • Common need for health promotion for caregiver and care recipient

14. National Survey of State Units on Aging and Developmental Disabilities Regarding Their Hot Button” Issues • Fragmented services, especially among the developmental disabilities (DD) • Aging with DD is a non-issue • Reactive rather than proactive practices by agencies—those who make noise….

15. Life Expectancies of Invisible Older Adults Have Increased • CDC study finds median life expectancy of adults with Down syndrome grew from 25 yrs in 1983 to 49 in 1997Yang et al.,The Lancet, 23 Mar 02 • Increase is 8 times national average • Adults with non-Down intellectual disabilities or with other developmental disabilities now have life expectancies close to mainstream population • Contributing factors include family caregiving and medications for common mid-life conditions

16. Shortage of Geriatrically Trained Physicians,Nurses, Pharmacists • There are some 700,000 licensed physicians in the United States • Some 7,000 have “Certificates of Added Qualifications” (CAQs) in geriatrics • There are critical shortages in the numbers of geriatric nurses, from R.N. to nurse assistant levels • There are few with triangular expertise, i.e., aging, medical specialty, lifelong disabilities

17. The Gift of Time: Challenges • Two-generation geriatric issues • Fear of the unknown • Transitions in care across longer life course • Living beyond the training mode • Permanency planning • Meaningful retirement • Common need for assisted autonomy

18. The Gift of Time: Opportunities • A fuller life for our children • Multi-directional care (between generations and between service systems) • Help for family caregivers • Grassroots initiatives • Coalitions (inter-system and inter-segment) • Best practices • Common need for creative approaches

19. Why Haven’t We Worked Together? Barriers to Intersystem Cooperation • Differences in perceived benefits • Tree versus forest mentality • Restrictive mental geography • Shortage of crossed-trained personnel • Absence of clear-cut goals • Lack of a non-threatening (neutral) broker

20. For the disabilities system, aging is a success. For the aging network, disabilities is a failure.

21. Why Should We Work Together?Benefits of Intersystem Cooperation • Broader range of options for individual, caregiver, planner, and provider • Reinforced self-care • Cost-effective resource sharing • Reciprocal (often no-cost) cross-training • Preparation and skills development for future needs, benefiting all involved

22. One to the Tenth Power Is Still One The Wisdom of Connections: • Creative marginality • Foremast lookout • Advocacy in “hard times” (It’s always hard times)

23. Coalitions: An Answer • Coalitions between advocacy groups and agencies, and between agencies across systems (aging, ID/DD, late-onset, health, social services, religious, recreation) can improve services, produce savings, and reinforce families and people with disabilities. • Coalitions are time-limited • Coalitions can be laboratories for public policy development

24. Maintaining Health with Lifelong Disabilities across a New Life Expectancy: The Individual • Lifelong health a new issue • Exercise and fitness • Health knowledge by individuals • Behavioral adaptation to functional losses • Improved assistive technology • Well-being and spirituality • Need for advocacy and to learn from late-onset

25. Family Caregivers Need • Recognition • Reinforcement • Reliable resource

26. The Overlooked Caregiver: Putting Life on Hold • Parent’s focus has been on his or her child • Marriage may be affected; “age-less” mentality • Perennial parenting (caregiving) wherever the child is living • At home or away • Postponed mid-life self-analysis • A key for one’s own continued growth • Use the energy that overcame obstacles • Focus inward

27. Family Caregivers Tend To: • See themselves as ageless • Take great pride in their independence and self-sufficiency • Keep to themselves how much they do • Be under-appreciated for their role in long term care • Fail to make realistic plans for continuity of care

28. Family Caregivers Need: Recognition • Family caregivers provide the overwhelming majority of chronic care to individuals with disabilities, whether life-long or late-onset • Family caregiving is one of the main contributors to the increased longevity of persons with lifelong, developmental disabilities and the well being of adults with late-onset disabilities

29. Family Caregivers Need: Recognition • Family caregivers are the unrecognized core of the long-term care system • Family caregivers save governments (local, state, federal) billions of dollars in chronic care costs • Recognition is the least tangible of the needs of family caregivers, but it sets in motion ways of meeting the other needs of reinforcement and reliable resource

30. Family Caregivers Need: Reinforcement • Family caregivers need added skills and knowledge to continue doing what they want most, to be left alone

31. Family Caregivers Need: Reinforcement • Family caregivers need training on matters related to aging with developmental disabilities or aging with late-onset, such as • Conditions and impairments • Self-health • Environmental press • Community resources • Advocacy • Probate, entitlements, and special needs trusts

32. Family Caregivers Need: Reinforcement • Often, family caregivers have postponed their own “mid-life crises” and other recognitions of their own aging. As a result, permanency planning (“futures planning”) is not common

33. Family Caregivers Need: Reinforcement • It would be fiscally prudent to strengthen the capacities of family caregivers to continue their caregiving • For policy makers, potential avenues of strengthening family caregivers include: • Caregiving stipends or grants • Tax deductions • Tax credits • Service credit banking

34. Family Caregivers Need: Reliable Resource • Family caregivers need information that is: • On various topics (health, insurance, government programs, services, etc.) • Coordinated, rather than scattered among various locations • Reliable, coming from a source that is likely to be there when needed

35. Family Caregivers Need: Reliable Resource • Aging and disabilities agencies overestimate the likelihood that family caregivers desire and will take direct services from them

36. Barriers to Intersystem Cooperation • Little or no history of interaction • Differences in perceived benefits • Tree versus forest mentality • Restrictive mental geography • Shortage of crossed-trained personnel • Absence of clear-cut goals • Lack of a non-threatening (neutral) broker

37. Creating the Climate for Partnerships • Several previous projects brought aging, lifelong disabilities, and other systems together for cross-training on priorities, funding streams, practices, resources • Partners III enabled local partnerships to field-test a model for collaboration suggested by these experiences and to report feedback and improvements

38. Potential Roles for Academics • Neutral broker • Convening site • Trainer • Source of interns/ practicum students • Evaluator of outcomes; researcher • Developer of aging with disabilities curriculum • Innovator

39. Potential Benefits for Academics • Real world focus • Academe-community partnerships • Intern/practicum sites for students • External advocates for the gerontology unit • Grant or project development • Cutting edge subject matter; FTEs

40. Model Projects Led by Academic Gerontologists • The Oneida-Lewis (NY) Coalition (Lucchino) • The Florida Project: ADDIE and FLAG (Sherman and Bloom) • The Texas Project (Stone) • North Carolina Task Force’s Blueprint (Baumhover and Folts) • The Partners Projects in Maryland and Virginia (Ansello et al.)

41. Oneida-Lewis Coalition’s Processes • Facilitator from local college’s institute on gerontology • Core group of people who would remain stable within the coalition, including consumers, service providers, administrators, representatives from public and private agencies • Prospective coalition members received information on reason for meeting, short concept paper describing needs and proposed goal • First meeting at local college (neutral site)

42. Oneida-Lewis Coalition’s Processes • Coalition members refined goal and outcomes and created subcommittees to address them • Planning strategy includes planning in stages of 1, 3, and 5 years • Coalition had own mailbox and letterhead, and was administratively separate from any organization that provides direct services • Coalition continued from the mid-1980s until 2001, when it considered its goals to be met

43. The Texas Project The model involves four strategies: • Coalition building • Community awareness, identifying community resources and gaps • Interagency cross-training • Needs assessments of older adults with DD and their families (Stone, 2000)

44. The Florida Model Rationale: For service systems to assume a proactive stance to aid families: • Models of service collaboration between aging and developmental disabilities service networks must be constructed • Elderly parent caregivers must be identified, their needs assessed, participation in service planning invited, and supported assistance offered (Sherman & Bloom, 2000)

45. The Florida Model • Sought to identify existing capacities of the local service systems, as well as the needs of the individuals, and to plan collaboratively for services • Marked the first time in Florida that the aging and developmental disabilities service systems worked in concert • Borrowed from attributes of models in Ohio, New York, Illinois, Maryland, and Virginia, all of which include some degree of grassroots control and incorporate some form of collaboration, outreach, and capacity building (Sherman & Bloom, 2000)

46. Project FLAGS (Florida Local Action Group) Objectives included: • Cross-training • Coordinate strategies to bring older adults with disabilities into aging network programs while retaining disabilities services • Identify older adults with DD, whether served or not, who could benefit from aging services • Recruit mentors for older adults with DD to facilitate their transition into senior programs (Sherman & Bloom, 2000)

47. Partners I, II, III in Maryland and Virginia: 1986-1997 Identified the key elements of effective intersystem cooperation as (1) formal mechanisms for collaboration at local and state levels, (2) diverse outreach strategies by local coalition acting as a virtual organization, and (3) capacity-building opportunities for staff, caregivers, and consumers Identified central roles for neutral brokers

48. Partners III Project: The Integrated Model of Services • Assembled best practices from several previous projects • Created and field-tested with AoA support a model for cooperation between the aging and developmental disabilities systems • Evaluated results in urban, suburban, and rural settings: Evidence-Based

49. Partners III Project: The Integrated Model of Services • Collaboration • Outreach • Capacity Building Ansello, Coogle & Wood, 1997)

50. Integrated Model of Service • Collaboration • Statewide Mechanisms • Memoranda of Understanding/Agreement • Professional/Consumer Advocacy Council (PCAC) • Area Planning and Services Committee (APSC) • = essential element