Report on Community Living
[Fourteen] 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.
Key findings:
- 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.
