On July 18^th of this year the Senate Health, Education, Labor, and Pensions (HELP) Committee released a report on the forward movement (or lack thereof) of Olmstead, titled “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act”. Olmstead v. L.C. is a Supreme Court decision which put states on notice that unnecessary segregation of individuals with disabilities is a violation of the Americans with Disabilities Act (ADA) of 1990. Olmstead envisioned that states would provide appropriate long-term services and supports (LTSS) to individuals with disabilities through home and community-based services (HCBS) and end forced segregation in institutions. As ending institutional bias has been a key priority for CDR since its founding, we have a vested interest in seeing Olmstead enforced.

The Senate HELP Committee report included numerous findings and recommendations. Ultimately though, it found that while states reduced the share of Medicaid spending on institutions, the population of individuals with disabilities under 65 in nursing homes actually increased. The results of the survey demonstrate that, with a few exceptions, state leaders continue to approach decisions regarding Medicaid from a social welfare and budgetary perspective. For the promise of Olmstead to be fully realized, state leaders must also approach decisions about Medicaid delivery options from a civil rights perspective. To do so, states must create an Olmstead plan with enforceable benchmarks. The findings were dismaying. While most of the responding states increased the number of individuals served in community settings, they also reported transitioning more individuals with disabilities from institutions into other congregate settings, including group homes, assisted living facilities, and other shared living arrangements. Meanwhile, hundreds of thousands of people with disabilities remain on waiting lists for HCBS services. Additionally, many states have focused more on enrolling people that are currently living in community settings into HCBS programs than on transitioning individuals living in institutional settings back into the community. Even when individuals are transitioned, it remains unclear whether they are transitioned to the most integrated setting possible or merely to a “less” institutional setting. Only 14 states provided information on the actual number of transitions from institutions to an individual’s own home, although HELP Committee Chairman Senator Harkin (D-IA) specifically requested this information. Many states’ Olmstead implementation efforts have not involved meeting specific benchmarks that are designed to transition people with all types of disabilities out of institutions, and into the most integrated setting in a way that is cost-effective. The Senate HELP Committee recommendations are broad and cover a wide range of needs with emphasis on coalition building. In fact, they call on the Centers for Medicare and Medicaid Services (CMS), the Administration on Community Living at the Department of Health and Human Services (HHS), the Office for Civil Rights at HHS, theDepartment of Housing and Urban Development (HUD), the Civil Rights Division at the Department of Justice (DOJ), the National Council on Disability (NCD), and the National Institute on Disability and Rehabilitation Research to create a high-level interagency task force within six months of the issuance of their report on Olmstead implementation; and notes that the task force should deliver a consistent message to states about their integration obligations and the federally created tools that can help them comply withOlmstead. Specific recommendations include: Congress:

• Congress should amend the ADA to clarify and strengthen the law’s integration mandate in a manner that accelerates Olmstead implementation and clarifies that every individual who is eligible for LTSS under Medicaid has a federally protected right to a real choice in how they receive services and supports.
• Congress should amend the Medicaid statute to end the institutional bias in the Medicaid program by requiring every state that participates in the Medicaid program to pay for HCBS, just as every state is required to pay for nursing homes, for those who are eligible.
• Congress should require clear and uniform annual reporting of the number of individuals served in the community and in institutions, together with the number of individuals transitioned and the type of HCBS living situation into which they are transitioned.

States:

• States should more fully examine the enhanced federal funding available under new federal programs designed to encourage states to transition more individuals into community-based settings and shift away from waivers, which allow states to set caps on the number of individuals served. Other federal programs – including the Community First Choice Option (CFC), the Balancing Incentives Program (BIP), and the 1915(i) option — provide significant additional federal resources in exchange for requiring the state to serve all of the eligible populations. Congress and CMS should help states to conduct analyses of the unmet need in individual states.

Federal Agencies:

• CMS should finalize its proposed rule defining what type of setting qualifies as “home” and “community-based”.
• NCD should review the various federal tools that have been created to assist states in moving away from institutions and toward HCBS. NCD should make recommendations to the Administration and Congress that will make it easier for state legislatures and Medicaid officials to understand their options, and to reward states that are proactive and avoid rewarding states that have been dragging their feet on Olmstead implementation.
• DOJ should expand its Olmstead enforcement efforts, to include investigations of segregated employment settings for individuals with disabilities and the inappropriate placement of young people with disabilities in nursing homes, especially in states that are in the bottom quartile of spending on HCBS and/or for discreet subpopulations.
• The Administration on Community Living at HHS and HUD should collaborate to develop and implement a national action plan to expand access to affordable, integrated, accessible, and “scattered site” housing for people with significant disabilities, consistent with the Olmstead decision.

CDR feels that these recommendations should in fact be requirements and will be following closely to see the next steps of states and federal entities. Please contact David Atias at datias@cdrnys.org or (585) 546-7510 if you want to get involved in advocacy efforts to enforce Olmstead.

CDR Review of HELP Committee Report on ADA Integration Measures