PAS Center State of the Science Conference Washington DC, Friday 27 April, 2007

1. PAS Center State of the Science Conference Washington DC, Friday 27 April, 2007 • Home & Community-Based Services: • National Trends & Inter-State Variations

2. Home & Community-Based Services (HCBS) • Formal (paid), long-term care services & supports (e.g., home health & assistive technology) that are delivered in home & community settings, as opposed to within institutions (e.g., nursing homes)

3. HCBS Policy Background • 1. Pressures to expand HCBS: • (a) Consumer preferences - especially among disabled (Kaiser Family Foundation 2001) • (b) Legal pressures- includingthe Olmstead decision(1999), litigation against states • (c) Policies including Deficit Reduction Act of 2005 2. Continued demands of institutional provision

4. Total US Long-Term Care Expenditures, 2004$194.2 billion Source: Health Policy Institute, Georgetown University, 2006

5. Medicaid HCBS Programs & Polices (Data Sources) • Personal Care optional benefit (UCSF Annual Survey) Optional, active in only 30 states (2003) Must be statewide, available to Medicaid categorically eligible groups • HCBS waivers (CMS Form 372 Reports) Optional, provides range of HCBS e.g. personal care (62%) Must be nursing home eligible, selective recipient groups Slots, geography & expenditures can be limited Financial & medical eligibility vary across states Waiting lists can be established • Home Health (UCSF Annual Survey) • Mandatory in all states for those eligible for Medicaid institutional care

6. Percentage of HCBS Participants & Expenditures in Medicaid LTC, 1997 - 2005 Institutional participants data from CMS MSIS; HCBS participant data from UCSF data. Expenditure data from Medstat (2006)

7. Medicaid HCBS Participants by Program, 1999 - 2003 2,550 2,373 2,127 2,021 1,864 Kitchener, Ng, & Harrington, 2006. Medicaid HCBS Program Data 92-03. San Francisco, CA: UCSF

8. Medicaid HCBS Expenditures by Program, 1999-2003 (in Billions) $28.8b $25.4b $22.5b $19.7b $17.5b Kitchener, Ng, & Harrington, 2006. Medicaid HCBS Program Data 92-03. San Francisco, CA: UCSF

9. Medicaid HCBS Participants & Expenditures by Program, 2003 Total Participants: 2,550,005 Total Expenditures: $28.8 billion Kitchener, Ng, & Harrington, 2006. Medicaid HCBS Program Data 92-03. San Francisco, CA: UCSF

10. Inter-State Variation in HCBS: 3 Highest & 3 Lowest Participants per 1,000 Population, 2003

11. Inter-State Variation in HCBS: 3 Highest & 3 Lowest Expenditures per Participant, 2003

12. Medicaid HCBS Programs: Cost Caps & Consumer Direction In 2004

13. Personal Care Expenditures & Participants, 1999-2003: Estimated Effects of 1SD Change, Significant Variables

14. 8 Largest Waiver Waiting Lists, 2004Total = 253,000

15. State Estimated Annual per Participant Public Cost Savings from Medicaid HCBS Waivers, by Waiver Target Group, 2002 (National Average = $43,947, $40 billion). . 1Kitchener et al, 2006

16. Conclusions: Unmet Need for Medicaid HCBS • Growth in Medicaid HCBS participants & expenditures • Uneven growth, politically mutable factors • Large & long waiting lists for HCBS waiver program in many states • Cost of unmet need for Medicaid HCBS: $1.4-3.7bn for those eligible for SSI1 • State officials report many groups not served (e.g., TBI, HIV/AIDS, mentally ill). • $40 billion, state estimated public savings of waivers in 20022 • Only 30 active PCS programs; Deficit Reduction Act state options to provide extended HCBS without waivers 1LaPlante et al, 2007; 2Kitchener et al, 2006