On Thursday, Senate Health, Education, Labor and Pensions (HELP) Committee Chairman Tom Harkin (D-IA) released a report assessing states' ability to fulfill the integration mandate contained within the Americans with Disabilities Act (ADA). As is clear from the title, "Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act" Harkin found states' actions woefully inadequate. Harkin was the Senate author of the ADA, which was signed into law in 1990. In 1999, the Supreme Court decision Olmstead v. L.C. articulated that the ADA requires people with disabilities must receive services in the most integrated settings appropriate.
The report finds that nearly 250,000 adults with disabilities remain segregated in nursing homes, with this number increasing as the population ages and people are living longer. The report says that though there has been progress towards transitioning people from institutions into home and community based services (HCBS), as of 2010 only twelve states spent more Medicaid funds on HCBS than on institutional care.
"The Supreme Court's decision in Olmstead was a landmark moment for the disability community - holding that the ability to live in the community is a protected civil right under the Americans with Disabilities Act. Yet my report reveals that 14 years later, many states are still not making a commitment to provide all individuals with disabilities the choice to live in their own homes and communities. This is amazing given that study after study has shown that home and community-based care is not only what people want, but is more cost-effective," Harkin said. "The report makes clear that we need to honor the anniversary of the ADA by redoubling our efforts to give people with disabilities who remain in institutions a chance to experience the same dignity and freedom-the same shot at the American Dream-as every other citizen."
The report is the result of information requests made by Harkin to all fifty states. The report highlights programs in several specific states and discusses those states' successes and challenges in implementing various federal programs. The state responses used to create the report are available here.
Key findings from the report include:
- Between 1995 and 2010, states reduced the share of Medicaid spending on institutions, including nursing homes, mental hospitals and institutions for people with intellectual and developmental disabilities from 79 percent to 50 percent.
- Despite this progress, only 12 states spent more than 50 percent of Medicaid LTSS dollars on home and community based care by 2010, and the population of working age Americans with disabilities in nursing homes actually increased between 2008 and 2012. This is true even though 38 studies over the past seven years have clearly demonstrated that providing HCBS is more cost-effective than providing services in an institution.
- Widespread inequities in access to HCBS still exist across states. In 2009, the percentage of spending on HCBS LTSS varied from more than 80 percent to less than 20 percent, and 38 states spent less than 50 percent of LTSS costs on HCBS. Hundreds of thousands of people with disabilities remain on waiting lists for community based services.
- From 2000 to 2007, nursing home use actually increased among adults age 31 to 65 in 48 states. Current data shows that there are still more than 224,000 individuals younger than 65 in nursing homes-almost 16 percent of the total nursing home population.
- Perceived uncertainty about the potential total cost of providing HCBS to every eligible individual in the state may be preventing states from exercising new federal options for HCBS. 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.
- When individuals are transitioned, it remains unclear whether they are transitioned to the most integrated setting possible or merely to a "less" institutional setting, and each state defines specific settings very differently.
- Many states' Olmstead implementation efforts have not involved meeting specific benchmarks designed to transition people with all types of disabilities out of institutions and into the most integrated setting consistently in a way that is cost-effective. No clear reporting system for HCBS programs exists to make it possible to analyze and compare how effectively states are meeting the Olmstead mandate.
Key policy recommendations from the report include:
- 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.State and federal efforts should focus on helping people live in their own homes. Virtually all people with disabilities can live in their own apartment or house with adequate supports. Accordingly, for virtually all people with disabilities, the most integrated setting appropriate is their own home.
- 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 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.
- 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 discrete subpopulations.