MEDICAID HOME & COMMUNITY-BASED SERVICES UNDER FISCAL CRISIS

1. MEDICAID HOME & COMMUNITY-BASED SERVICES UNDER FISCAL CRISIS GSA ANNUAL MEETING, SAN DIEGO Sunday 23 November, 2003 Martin Kitchener PhD MBA* Charlene Harrington PhD* Terence Ng MA* Risa Elias MPP (Kaiser Family Foundation) *Department of Social and Behavioral Sciences University of California, San Francisco Tel: (415) 502-7364 Email: martink@itsa.ucsf.edu Funded by: Kaiser Commission on Medicaid & the Uninsured, and National Institute for Disability & Rehabilitation Research (NIDRR)

2. Total US Expenditure for LTC in 2001 - $132 billion Source: Levit et al 2003

3. Medicaid Long Term Care Medicaid - joint federal-state program for poor 2001 total Medicaid LTC participants: 4 million 2001 total Medicaid LTC expenditures: $75 billion 43 states report budget deficits in 2003

4. Medicaid LTC Participants by Provision Type, 2001 Total Participants: Est. 4 million Source: HCBS (Kitchener et al 2003); Institutional (MSIS 2000 Data)

5. Medicaid LTC Expenditures by Provision Type, 2001 Total Expenditures: $75 billion Source: CMS Form 64 Data, Medstat 2003

6. Medicaid Long Term Care • Resource demands of institutional provision (e.g., nursing homes) and • Mounting pressures to extend HCBS: (a) Poor quality of Nursing Home care & increasing costs (IOM 2001) (b) Consumer preferences for HCBS, especially by disabled (c) Legal pressures including Americans with Disability Act (1990) & the Olmstead decision (1999). Litigation against states & settlement agreements

7. Study Aims & Method Aims • Examine trends in participation and expenditure on HCBS programs under fiscal crises. • Track states’ responses to financial crisis and legal challenges • Examine the impact of policy changes to access. Method • CMS Form 372 reports for waivers (data collected since 1992, n = 229 in 2001) • CMS Form 64 Data for Personal Care and Home Health, expenditure data available since 1992. • Survey of Personal Care (n = 28) and Home Health Programs (n = 51), ongoing since 1999. 4. Survey of Waiver Policy (2002), 91% response rate

8. Medicaid HCBS Programs • Home Health care Required in all states for those eligible for Medicaid institutional care • State Plan Personal Care optional benefit Available in only 28 states Must be statewide, available to Medicaid categorically eligible groups 3. HCBS waivers Must be nursing home eligible, selective recipient groups Slots & expenditures can be preset and limited Financial and medical eligibility vary across states Waiting lists can be established Can be restricted geographically Since 2002, can have community transition grants

9. Medicaid HCBS Participants by Program, 1999 - 2001 Kitchener, Ng, & Harrington, 2003. Medicaid HCBS Program Data 92-01. San Francisco, CA: UCSF

10. Medicaid HCBS Participants by Program, 2001Total 2,117,948 Kitchener, Ng, & Harrington, 2003. Medicaid HCBS Program Data 92-01. San Francisco, CA: UCSF

11. Medicaid HCBS Expenditures by Program, 1999 - 2001 Kitchener, Ng, & Harrington, 2003. Medicaid HCBS Program Data 92-01. San Francisco, CA: UCSF

12. Medicaid HCBS Expenditures by Program, 2001Total: $22 billion Kitchener, Ng, & Harrington, 2003. Medicaid HCBS Program Data 92-01. San Francisco, CA: UCSF

13. HCBS Participants and Expenditures by Program, 2001 40% 64% 26% 23% 34% 13% Kitchener, Ng, & Harrington, 2003. Medicaid HCBS Program Data 92-01. San Francisco, CA: UCSF

14. Waiver Expenditures by Recipient Type, 2001Total: $14 billion Kitchener, Ng, & Harrington, 2003. Medicaid HCBS Program Data 92-01. San Francisco, CA: UCSF

15. Waiver Expenditures and Expenditures per Participant, 1992 – 2001($17,070 per participant, 2001) Kitchener, Ng, & Harrington, 2003. Medicaid HCBS Program Data 92-01. San Francisco, CA: UCSF

16. Waiver Cost Control Policies • Limits on waiver financial and medical eligibility for those who are otherwise eligible for institutional care • Ceilings or caps on services and expenditures per recipient • Geographical limits within states • Limits on waiver slots • Establishment of waiting lists Kitchener, Ng, & Harrington, 2003. Waiver Policies HHCCSQ. Forthcoming

17. Waiver Financial Eligibility Limits As a % of SSI or Poverty Level, 2002 N=209 Waivers (91%)

18. “Caps” on Waiver Expenditures, 2002

19. Waiver Waiting Lists by Recipient Types, 2002 Total - 155,884

20. Waiting Lists for HCBS Waivers in Selected States, 2002

21. State Variation in Medicaid HCBS, 2001 Kitchener, Ng, & Harrington, 2003. Medicaid HCBS Program Data 92-01. San Francisco, CA: UCSF

22. Unmet Need for Medicaid HCBS • Large & long waiting lists for HCBS in many states • Cost of unmet need for Medicaid HCBS: $1.9bn for those living alone & $4.7bn for those living with others. • State officials report many groups not served (e.g., TBI, mentally ill). • Only 28 states offer State Plan Personal Care Option • Fiscal crises may impede HCBS program growth LaPlante et al, (in press); Kitchener et al, 2003

23. Conclusions I. Participation and Expenditure Trends (a) Persistence of large inter-state variation in HCBS program provision and growth (b) Differential and sometimes negative participation growth II. Data (a) Continue tracking HCBS program trends (b) Expand data gathering to include Home Health & Personal Care policies • Policy (a) Medicaid LTC expenditure growth likely/necessary (b) Distribution Choice 1: Medicaid vs tax cuts, military spending etc (c) Distribution Choice 2: Institutional vs HCBS (d) HCBS: cost controls, provider supply, regulation, quality (e) Large waiting list (e.g. Texas) and long wait times for waiver services