1. Charlene Harrington PhD, Terence Ng MA Department of Social & Behavioral Sciences University of California, San Francisco 3333 California Street, Suite 455 San Francisco, CA 94118  415-476-4030  Charlene.Harrington@ucsf.edu www.pascenter.org Funded by: Kaiser Commission on Medicaid & the Uninsured, and National Institute on Disability & Rehabilitation Research (NIDRR) 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- including the 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 Harrington & Ng, 2007. Medicaid HCBS Program Data 92-04. San Francisco, CA: UCSF 1,898 2,061 2,137 2,382 2,567 2,700

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

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

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 HCBS Expenditures per Participant, 2004 US Ave: $11,565

14. Medicaid HCBS Programs: Financial Eligibility, Cost Caps, & Consumer Direction, 2006 Home Health (N=51) Personal Care (N=32) Waiver (N=271) Discretionary cost caps Hours of care only Cost limits only Geographic limit only Combination limits No limits 12 (24%) 4 (8%) 0 1 (2%) 34 (67%) 12 (38%) 1 (3%) 0 1 (3%) 18 (56%) 20 (7%) 70 (26%) 5 (2%) 15 (6%) 161 (59%) Consumer direction 12 (24%)10 (31%)96 (35%) Independent providers N/A12 (38%)N/A

15. 8 Largest Waiver Waiting Lists, 2006 Total = 280,176 Texas – 119,760 on 6 wait lists Ave. wait time: 20 months Indiana – 31,499 on 7 wait lists Unknown wait time Pennsylvania – 24,926 on 2 wait lists Unknown wait time Florida – 20,009 on 5 wait lists Ave. wait time: 42 months Wisconsin – 16,024 on 3 wait lists Ave. wait time: 50 months Oklahoma – 8,580 on 3 wait lists Ave. wait time: 28 months Maryland – 8,400 on 3 wait list Ave. wait time: 27 months Louisiana – 8,110 on 4 wait lists Ave. wait time: 62 months

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 No. of Persons with Institutional Level of Care and Unmet Need in Personal Care Estimated Annual Average Expenditures Basic Financial Eligibility (100% or less of SSI or FPL) 607,000$3.1bn Expanded Financial Eligibility (300% or less of SSI or FPL) 886,000$5.3bn 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