US Senate Committee on Health, Education, Labor, & Pensions

After Year-Long Investigation, Senate HELP Committee Chairman Tom Harkin Releases Report Showing ADA’s Promise of Integration is Not Being Met for Many Americans with Disabilities

Thursday, July 18, 2013

After Year-Long Investigation, Senate HELP Committee Chairman Tom Harkin Releases Report Showing ADA’s Promise of Integration is Not Being Met for Many Americans with Disabilities

Supreme Court’s Olmstead Decision Ruled That Unnecessary Segregation of Individuals with Disabilities is a Violation of the ADA—but HELP Committee Report Finds That 14 Years Later, States Have Yet to Make Adequate Progress in Ensuring Independent Living

HELP Committee Report: Providing Services for People with Disabilities Outside of an Institution Is Most Cost-Effective Option, Yet More than 200,000 Americans with Disabilities Under Age 65 Remain Unfairly Segregated in Nursing Homes

Harkin: Enforcement of Olmstead is a Civil Rights Prerogative

WASHINGTON, D.C.—A Senate Health, Education, Labor, and Pensions (HELP) Committee report unveiled today by Chairman Tom Harkin (D-IA) revealed that 14 years later, many states are failing to live up to the integration mandate of the Americans with Disabilities Act. The Supreme Court ruled in Olmstead v. L.C. in 1999 that the unnecessary segregation of individuals with disabilities in institutions is a violation of the Americans with Disabilities Act, thus directing states to enable community-based long-term care services for these Americans.

The report, titled “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act,” is the result of requests for information sent by Chairman Harkin to all 50 states on the progress made to transition individuals out of institutions.  Harkin, who is the Senate author of the landmark Americans with Disabilities Act, has long sought to ensure that all Americans have a real choice to receive Medicaid-funded care in the community.  Today’s report is a comprehensive review of the types of community-based services states provide to individuals with disabilities compared to the institution-based services they must provide.  

The report reveals that almost a quarter of a million working-age Americans remain unfairly segregated in nursing homes, and the number of working-age Americans with disabilities confined to nursing homes is actually growing.  While progress has been made nationally, by 2010 only 12 states spent more than 50 percent of Medicaid funds on community-based care instead of 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.”

“Congress and our federal government can take additional steps to improve progress on Olmstead and fulfill the promise of independent living for Americans with disabilities that require long-term services and supports,” Harkin continued. “States must set clear benchmarks to make the right to live in the community a real choice for all Americans with disabilities.”

The HELP Committee report makes key policy recommendations to better ensure that the choice to live in the community becomes a reality for all Americans.  These recommendations include an amendment to the ADA to clarify and strengthen the law’s integration mandate in a manner that accelerates implementation and clarifies that every individual who is eligible for long-term services and supports (LTSS) under Medicaid has a federally protected right to a real choice in how they receive services and supports. The report also recommends Congressional action to amend the Medicaid statute to end the institutional bias in the program by requiring every state that participates in the Medicaid program to pay for home and community-based services (HCBS)—just as every state is required to pay for nursing homes, for those who are eligible.

The full report, with executive summary, can be found here.
A copy of responses from states can be found here.

Key findings from the report include:

  • In the years since the Olmstead decision, nationally there has been a fundamental rebalancing of spending on individuals with disabilities in institutions as compared to spending on home and community based services (HCBS) that allow Americans to be part of their communities. 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.
  • However, 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.
  • Studies show that 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.

 

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