Charlene Harrington PhD* Terence Ng JD, MA Department of Social & Behavioral Sciences University of California, San Francisco 3333 California Street, Suite 455 San Francisco, CA * Funded by: Kaiser Commission on Medicaid & the Uninsured, and National Institute on Disability & Rehabilitation Research (NIDRR) Medicaid LTC & HCBS Trends in Programs and Policies

Total US Long-Term Care (LTC) Expenditures, 2011 $221 billion Source: Historical National Health Expenditure Data, CMS

Medicaid HCBS Policy Issues 1. State & federal budget deficits and increased austerity. 2. Continued demands of institutional provision 3. Consumer preferences 4. Legal pressures- Americans with DisabilitiesAct (1990) & the Olmstead decision (1999). 5. Litigation against states 6. Legislation including Deficit Reduction Act and Affordable Care Act 7. Program initiatives such as Money Follows the Person and Cash & Counseling

Study Aims & Method Aims Examine trends in participation & expenditure on Medicaid HCBS programs Examine state HCBS policies Method 1.CMS Form 372 reports for HCBS waivers (n = 283 in 2008) 2.State Survey of Medicaid State Plan Personal Care (PCS) Optional Benefit (n = 32) 3.State Survey of Medicaid Home Health (n=51)

Medicaid HCBS Programs Personal Care optional benefit (UCSF Annual Survey) - Optional, actively available in 32 states (2010) - Must be statewide, available to Medicaid categorically eligible groups Home Health (UCSF Annual Survey) - Mandatory

Medicaid HCBS Waivers HCBS 1915c waivers (CMS Form 372 Reports) -In 2008, 49 states offer 283 waivers (VT and AZ use 1115 managed care waiver & RI started in 2009) -Optional program - provides range of HCBS and may include personal care -Must be targeted to selected recipient groups (up to 14 waivers in some states) -Must be nursing home eligible -Financial & medical eligibility vary across states -Slots, geography & expenditures can be limited -Must be cost neutral - Waiting lists can be established

Medicaid HCBS Participants & Expenditures by Program, 2008 Ng & Harrington, Medicaid HCBS Program Data San Francisco, CA: UCSF Total Participants: 3.07 millionTotal Expenditures: $45 billion

Medicaid HCBS Participants by Program, m 2.1m 2.4m 2.6m 2.7m 2.8m Ng & Harrington, Medicaid HCBS Program Data San Francisco, CA: UCSF

Medicaid HCBS, Participant per 1,000 Pop US – 10.09

Medicaid HCBS Expenditures by Program, $17b $19b $22b $25b $28b $32b $35b $38b $42b Ng & Harrington, Medicaid HCBS Program Data San Francisco, CA: UCSF $45b

Medicaid HCBS, Expenditures per Capita US - $147.91

Waiver Participants & Expenditures by Target Group, 2008

Medicaid HCBS Cost Control Policies HCBS Waivers Limits on waiver financial for those who are otherwise eligible for institutional care (68 waivers in 19 states less than 300% SSI) 11 waivers in 9 states have more restrictive functional eligibility Gaps in waivers (23 states cover children, 22 TBI/SCI, 15 HIV/AIDS, 1 mental health waivers) Ceilings or caps on services and expenditures per participant Geographical limits within states - 18 waivers Limits on waiver participants (slots) - establish waiting lists State Plan Personal Care Services Ceilings or caps on services and expenditures per participant Services vary between states – 18 states limit hours Not available in 19 states except through waivers Home Health Services vary between states

Consumer Direction & Forms of Cost Controls, 2010 HCBS Waivers (n=293) State Plan PCS (n=32) Home Health (n=51) Consumer Direction 119 (41%)12 (35%)7 (14%) Cost Controls Hourly/Service Limits 49 (17%)18 (53%)21 (41%) Cost Limits89 (30%)3 (9%)5 (10%) Geographic Limits 18 (6%)32 active statesnone Waiting Lists149 (51%)none

Waiver Slots and Waiting Lists by Target Group, 2010 Total Slots: 1,420,365 Waiting List: Total 428,571

States with Largest Wait Lists for HCBS Waivers, 2010 (Total: 428,571) Texas – 125,385 on 6 wait lists Ave. wait time: 20 months Ohio – 44,293 on 3 wait lists Ave. wait time: 3 months Illinois – 33,114 on 3 wait lists Ave. wait time unknown Florida – 32,753 on 10 wait lists Ave. wait time: 39 months Indiana – 32,355 on 5 wait lists Ave. wait time: 18 months Maryland – 27,810 on 7 wait lists Ave. wait time: 41 months

The Institutional Bias in Medicaid LTC, 2008 Source: HCBS (Ng and Harrington, 2011), Institutional (CMS Form 64 Data, Medstat 2010; MSIS 2008 Data) Expenditures: $107 billion Participants: 4.8 million

Study Aims & Method Aim: To determine whether Medicaid HCBS waivers save money Methods Examine the national average Medicaid spending on waiver participants Examine the national average Medicaid spending on institutional participants who might be served in waivers Examine the cost savings to Medicaid when serving persons in waivers rather than institutions Data Sources 1.CMS Form 372 reports for HCBS waivers (n = 283 in 2008) 2.Estimation of housing costs through SSI and SSP

Medicaid Annual HCBS Savings, by Waiver Level of Care, 2008

Total Savings, 2008 ($m) US Total Savings - $61 Billion

States Can take Advantage of ACA Provisions State balancing incentive payment (for states that spend less than 50% on HCBS) -- 5% increase for 0-25% HCBS and 2% for 25-50% HCBS Community First Choice Option - Allows states to cover Personal Care for those with an institutional level up with incomes to 300% of SSI (receive 6% increase in federal match) – 19 states have no PCS program Allows HCBS waiver to become a state plan option for incomes up to 300% of SSI without cost neutrality requirements New regulations allows states to consolidate HCBS waivers Expanded Money Follows the Person program to transition individuals out of NHs

Medicaid HCBS : Conclusion Many gaps in coverage for waiver groups in some states Aged receive fewer expenditures per participant than DD Waiver service and cost caps impact on program growth and create unmet needs Large & long waiting lists for HCBS waiver programs in many states 19 states had no state plan personal care Wide inter-state variation in HCBS service provision and spending on services Concern that state may cutback because of deficits and not take advantage of ACA provisions