Focusing on the Needs of Vulnerable Working Age Populations

1. Focusing on the Needs of Vulnerable Working Age Populations Nancy A. Miller, Ph.D. University of Maryland, Baltimore County Meeting the Nation’s Needs for Personal Assistance Services State of the Science Conference, April 27, 2007

2. Overview • The changing composition of the nursing home population • A profile of vulnerable working age individuals • Some factors to note • Research needs related to vulnerable working age individuals • Federal and state policy initiatives

3. The changing composition of the nursing home population • Working age individuals (ages 18-64) are a growing segment of the nursing home population (CMS, 2005) • Share of the nursing home population that is working age increased between 2000 and 2004 • Growth was pronounced among individuals age 31 to 64, increasing from 10 to 12% of the population • Increase was experienced across all states and the District of Columbia • Share of the nursing home population that is working age was particularly large in Alaska (23.5%), Illinois (16.3%), Louisiana (16.0%), Arizona (15.9%), California (15.2%)

4. A profile of working age individuals in nursing homes • Behavioral Model of Health Care Use for Vulnerable Populations (Gelberg, Andersen, & Leake, 2000) • Predisposing (Miller & Weinstein, 2007) • Traditional • 52.7% never married • 63.4% Black • 2-18 years of education; 47.3% not a high school graduate • Vulnerable • 11.8% homeless prior to the precipitating acute event • 24% resided with a family member • 14.2% resided in another institution

5. A profile of working age individuals in nursing homes • Vulnerable • 11.8% homeless prior to the precipitating acute event • 24% resided with a family member • 14.2% resided in another institution

6. A profile of working age individuals in nursing homes • Enabling • Traditional • 8.9% privately insured • 18.7% insured through Medicare • 44.8% insured through Medicaid • 27.6% uninsured • Vulnerable • 61.2% had family/friend involvement in the decision • 25.8% did not know the medical provider who had made the nursing home admission decision

7. A profile of working age individuals in nursing homes • Need • Traditional • Majority reported fair (34.8%) or poor (27.0%) health • Vulnerable • Cardiac conditions – 49.8% • Diabetes – 27.2% • HIV/AIDS – 27.2% • Paralysis – 25.8% • Developmental disability/epilepsy – 25.4%

8. A profile of working age individuals in nursing homes • Site variability in admissions cohorts (Miller, Brody, Kang, & Harrington, 2006) • Predisposing, vulnerable • San Francisco participants more often came from a single room occupancy setting (22.0%) • Washington D.C. participants more often homeless (22.2%) • Enabling, vulnerable • San Francisco and Washington D.C. participants reported less family/friend involvement (44.0%, 34.0% vs. 61.2%) • Diabetes more prevalent among Washington, D.C. participants (48.0% vs. 27.3%, 18.0%)

9. A profile of working age individuals in nursing homes • Site variability in admissions cohorts (Miller, Brody, Kang, & Harrington, 2006) • Need, vulnerable • HIV/AIDS more prevalent among Maryland (27.3%) and San Francisco (28.0%) • “Outcomes”, vulnerable • Participants in San Francisco less likely to be aware of expected length of stay (64.0% vs. 82.4%, 74.1%) • Participants in Washington, D.C. less aware of alternate settings for care (48.2% vs. 72.3%, 82.0%)

10. A profile of working age individuals in nursing homes • Relative to older individuals, younger individuals are: • Predisposing, traditional (DHHS, 2002) • Less often married (44.6% vs. 11.8%) • More often minority (27.3% vs. 12.9%) • More often male (50.4% vs. 25.7%) • Enabling, traditional • More often insured by Medicaid (75.8% vs. 56.8%)

11. A profile of working age individuals in nursing homes • Need, vulnerable • Less often in need of assistance with ADLs (13.4% vs. 4.1%) • Younger working age adults typically experience conditions arising from mental retardation and developmental disabilities or acute trauma (Fries, et al., 2004) • Older adults experience chronic conditions such as diabetes and cardiac disorders

12. Factors related to discharge from a nursing home among the working age • Preference to return to the community (+) (Snyder, 2006) • Support to return to the community (+) • Married (+) • White (+) • Female (+) • Greater than high school education (+)

13. Factors related to discharge from a nursing home among the working age • Urinary incontinence (-) • Feeding tube (-) • Prior nursing home residence (-) • Cognitive loss (-) • Prior stay in a psychiatric facility (-)

14. Some factors of note • Predisposing • Traditional • Growth in racial and ethnic minorities • Enabling • Traditional • Declining insurance coverage • Vulnerable • Availability and accessibility of HCBS • Availability of PAS providers • Affordable and accessible housing

15. Some factors of note • Need • Vulnerable • Increasing prevalence of chronic conditions • Increasing disability associated with chronic conditions • Diabetes and its complications • HIV/AIDS

16. Research needs related to vulnerable working age individuals • Pathways to vulnerability • Insurance • Patient/provider interactions • Relative contribution of predisposing, enabling and need factors to risk for institutional use and discharge • Interventions to reduce risk/vulnerability • Housing issues • Management of chronic conditions to reduce disability • Provider cultural competency

17. Research needs related to vulnerable working age individuals • Interventions focused on long stay (6 months+) individuals • Supported housing • Cognitive issues • Medical issues • Mental health issues • Methods to increase individuals’ participation and choices related to HCBS • Hospital decision making

18. Federal and state policy initiatives • Ticket to Work and Work Incentives Improvement Act • President’s New Freedom Initiative • Centers for Medicare & Medicaid Services (CMS) Real Choice Systems Change Grants • Deficit Reduction Act of 2005 Money Follows the Person Demonstration