Academy Health Annual Research Meeting Washington DC, Monday, 9 June 2008

1. Academy Health Annual Research Meeting Washington DC, Monday, 9 June 2008 • Home & Community-Based Services: • National Trends in Programs & Policies

2. Home & Community-Based Services (HCBS) • Pressures to expand formal HCBS • Consumer preferences - especially among disabled • Legal pressures- includingthe Olmstead decision(1999), litigation against states • Federal and state policies and programs • Poor quality of nursing home care

3. Total US Long-Term Care Expenditures, 2006$177.6 billion Source: Catlin, Cowan et al, CMS Actuary, Health Affairs, 2008

4. Collect and Analyze State HCBS Policies and Programs • CMS Form 372 data on 1915c waiver program participants, expenditures and services from each state (since 1992) • State waiting lists for 1915c waiver programs • State participant and expenditure data for other state HCBS programs including personal care & home health care (since 1999) • State policies for 1915c waiver programs, personal care, and home health (since 2003)

5. Medicaid HCBS Programs & Polices (Data Sources) • HCBS waivers (CMS Form 372 Reports) - Optional, provides range of HCBS e.g. personal care - Must be nursing home eligible, selective groups - Slots, geography & expenditures can be limited - Financial & medical eligibility vary across states - Waiting lists can be established • Personal Care optional benefit (UCSF Annual Survey) - Optional, active in 30 states (2006) - Must be statewide, available to Medicaid categorically eligible groups • Home Health (UCSF Annual Survey) • - Mandatory in all states but only for those eligible for Medicaid institutional care

6. HCBS Participants & Expenditures as Percent of Total Medicaid LTC, 1997 - 2006 Institutional participants data from CMS MSIS; HCBS participant data from UCSF data. Expenditure data from Medstat (2007)

7. Medicaid HCBS Participants by Program, 1999 - 2004 2,700 2,567 2,382 2,137 2,061 1,898 Harrington & Ng, 2007. Medicaid HCBS Program Data 92-04. San Francisco, CA: UCSF

8. Medicaid HCBS Expenditures by Program, 1999 - 2004 $31.2b $28.2b $25.1b $22.1b $19.4b $17.2b Harrington & Ng, 2007. Medicaid HCBS Program Data 92-04. San Francisco, CA: UCSF

9. Medicaid HCBS Participants & Expenditures by Program, 2004 Total Participants: 2,700,163 Total Expenditures: $31.2 billion Harrington & Ng, 2007. Medicaid HCBS Program Data 92-04. San Francisco, CA: UCSF

10. Inter-State Variation in HCBS: 3 Highest & 3 Lowest Participants per 1,000 Population, 2004

11. Inter-State Variation in HCBS: 3 Highest & 3 Lowest Expenditures per Participant, 2004

12. Medicaid HCBS Participants per 1,000 Population, 2004 US Ave : 9.19

13. Medicaid HCBSExpenditures per Participant, 2004 US Ave: $11,565

14. Medicaid HCBS Programs: Financial Eligibility, Cost Caps, & Consumer Direction, 2006

15. 8 Largest Waiver Waiting Lists, 2006Total = 280,176

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

17. Estimated Cost of Providing Personal Care Services to Medicaid Participants with Unmet Needs LaPlante et al, 2007

18. Conclusions: Unmet Need for Medicaid HCBS • Continued growth in Medicaid HCBS participants & expenditures • Uneven growth across states • Large & long waiting lists for HCBS waiver program in many states • State officials report many groups not served (e.g., TBI, HIV/AIDS, mentally ill). • Only 30 active PCS programs • Deficit Reduction Act state options to provide extended HCBS but with limited services and stricter eligibility criteria. • Medicaid budget cuts threaten future growth

19. Long Term Care Challenges • Expand access to Medicaid HCBS services and eliminate unmet need • Ensure adequate numbers of providers and home and personal care workers • Improve standards and the quality of care for LTC • Keep costs at a reasonable level • Work for a comprehensive LTC system for all