Aging with a Developmental or Psychiatric Disability: A Forgotten Minority

1. Aging with a Developmental or Psychiatric Disability: A Forgotten Minority Charlie Bernacchio, EdD, CRC & Donna Falvo, PhD, CRC University of North Carolina at Chapel Hill

2. Aging with a DD or PD Participants will be able to identify: • What is known about people w. DD and PD who are aging • Some of the challenges and barriers to consider for older people w. DD or PD • The need for aging research • Potential for increased demands on a strained system of public health care

3. Aging with a DD or PD • Developmental disabilities are severe, life-long disabilities attributed to mental and/or physical impairments, manifested before age 22. (pop. of DD is about 4.5 million) • Psychiatric disabilities are a heterogeneous group of mental disorders, that can affect a person’s thinking, feeling, moods, ability to relate to others, and capacity for coping with the demands of life. (pop. of PD estimated to be between 5-10 million adults)

4. Aging with a DD or PD • Historically, people with DD and most people with PD (chronic, severe and persistent mental illness) were receiving institutionalized care and often a poor quality of health care, that many would succumb to other chronic medical conditions for which they were at-risk. This would then result in fatality earlier in their adulthood, so life expectancy was low. (Horwitz et al. 2000)

5. Aging with a DD or PD • Widely varying estimates notwithstanding, the actual size of the population of older adults with DD is unknown- • In any event it is clear that: • A substantial number of older adults have one or more DD • However large this number is, it will likely go up rapidly as “baby boom” members approach advanced age • Both service delivery networks are unprepared to deal with this population increase

6. Aging with a DD or PD Factors making it difficult to accurately define the population include- • Many older people w. DD live in community settings and tend to remain “unknown” to formal service delivery networks • Inconsistencies exist across disciplines as to what conditions qualify as life-long disabilities

7. Aging with a DD or PD Factors making it difficult to accurately define the population include- • Lack of interactions among various service delivery network staff or constituents • Concerns about the capacity to meet the needs of this population may influence attempts to accurately determine the depth and breadth of the need (Ansello & Eustis, 1992)

8. Aging with a DD or PD • In the last ten years it’s estimated that an increase in the number of older adults with DD living in NC occurred equal to between 1000- 2000 (even by conservative estimates) • Formulas for estimating range from 1 in 100 to 5 in 1000. (Folts & Baumhover, 2001)

9. Aging with a DD or PD • Older Americans (ages 55 years and older) comprise 21% of the population (US Census Bureau, 2000). • Almost 20% of adults age 55 and older experience specific mental disorders that are not part of “normal” aging (DHHS, Surgeon General’s Report, 2004).

10. Aging with a DD or PD • Representing only 13% of the population individuals age 65 and older accounted for 18% of all suicide deaths (NIMH, 2004). • Of the nearly 35 milllion Americans age 65 years and older, an estimated 2 million have a depressive illness and another 5 million may have depressive symptoms that fall short of meeting full diagnostic criteria for a disorder (NIMH, 2004).

11. Aging with a DD or PD • Yelin & Cisternas (1997) using roughly 10 years of NHIS identified old age and non-white status to be negatively related to labor force participation among people with PD • Although labor participation generally goes down as age increases, the phenomenon among persons with PD occurs at an earlier age and to a greater degree

12. Aging with a DD or PD • Older people with PD are a group whose numbers will increase disproportionately to the general population as society ages and are in need of specialized attention (Burke-Miller et al. 2006) • Social characteristics of people with PD, i.e., age, gender, race and others are clearly related to work outcomes in a vocational rehabilitation context

13. Aging with a DD or PD Barriers for people w. PD include- • Attitudinal • Lack of support systems • Co-existing medical and psychiatric disorders • Uncoordinated services • Financial • Inadequate support to families • Limited geriatric specialization (Hatfield, 1999)

14. Aging with a DD or PD • Onset is an important issue since less attention is given to aging, health and related care when the DD condition is acquired at an early age • People w. disabilities are vulnerable to early onset of frailty, lives within the context of an aging, social support and care giving system and have reported problems of access to primary and preventive health services. (Aronow & Hahn, 2005)

15. Aging with a DD or PD • Concern over the small number and low percentage of geriatric grants are troubling • A fewer number of aging applications are submitted by new investigators to NIMH; significantly below compared to number of applications to other program areas • The low number of awards to geriatric applications may have been due to bias or lack of expertise in the review groups (NIMH, 2004)

16. Aging with a DD or PD • NIMH devoted 8.5 % of its FY 2002 portfolio to aging research; compares favorably to other NIH Institutes • More of the NIMH budget is devoted to studies in the child area (4:1) although rates of MH disorders are similar between groups; the geriatric segment of the population will be growing drammatically.

17. Aging with a DD or PD • There is a need for more geriatric research applications to NIMH; there’s an alarming dearth of Level1 Career applicants in the aging area, despite the high likelihood of funding. • Effort at NIMH requires a F-T aging expert to manage grants and NIMH must make a concerted effort to develop new applications in geriatrics.

18. Aging with a DD or PD • ADD has several priority areas for projects of national significance- a review of ten of the 16 areas of grant funded projects, only two programs were remotely involving older people with DD (housing & health) • No ADD publication could be found at their DHHS web site pertaining to aging and people with DD

19. Aging with a DD or PD • Other research priorities pertinent to the aging DD or PD population are among funded programs within NIDRR and NIH that often encompass all people with disabilities. • AOA has also identified related funding areas which are inclusive of all people with disabilities

20. Aging with a DD or PD Areas of Need in NC- • Identify/describe older population with DD • Estimate impact and service needs • Determine current and future supports in NC • Baseline data on well-being and support systems in aging and DD networks • Compile info on future care planning • Develop community-based partnerships (Folts & Baumhover, 2002)

21. Aging with a DD or PD • Psychiatric conditions, i.e., depression and dementia are common among aging Americans; yet, America’s current health care system is not positioned to appropriately identify and treat these problems. • An impending need for mental health care among the elderly is on the horizon; the AOA examined services and health care available to elderly Americans with mental illness and found that older Americans are denied access to needed treatment and services. (AOA Older Adults with Mental Illness, 2001)

22. Aging with a DD or PD • A longitudinal study (1982-2002) of 172,227 adults 70+ years of age showed rates of disability declined, yet smaller decreases were seen in least advantaged SES groups, specifically in ADL limitations from disability. • Racial and ethnic disparities in old-age disability have persisted over 20 years, while SES disparities have increased.