Today marks the twenty-third anniversary of the signing of the Americans with Disabilities Act.
The most brutal form of discrimination that Americans with disabilities continue to face is our forced segregation in institutions and nursing homes. A report released last week by Senator Tom Harkin (D-Iowa), chairman of the Health, Labor, Education and Pensions Committee, shows that state governments have been slow to change the policies and spending priorities that are responsible for this segregation.
In the 1999 case of Olmstead v L.C. and E.W., the U.S. Supreme Court ruled that state governments violate the ADA when they require all people with disabilities in need of such publicly funded long-term services and supports to be institutionalized in order to receive help.
There are millions of disabled Americans who, like me, need the assistance of others to perform routine daily tasks like dressing and bathing. A state program pays the wages of workers I hire to assist me in my home. But there are many others who still don't have such programs available to them and thus end up in nursing homes.
There has been concrete, positive change. Harkin's research found that the proportion of Medicaid funding spent on programs supporting people like me in our homes and communities has increased from 20 to 50 percent since 1995.
But the research also found that only 12 states spent more than 50 percent of these Medicaid funds on home and community-based service programs. Hundreds of thousands of people are on waiting lists for such programs, the research also found. Meanwhile, the number of people with disabilities under age 65 living in nursing homes actually increased between 2008 and 2012, according to Harkin's research.
States continue to segregate, even though 38 studies released in the last seven years show home and community-based options are less expensive, the research says.
But there are powerful political forces, like the nursing home industry with its billions of dollars in profits, that benefit from the oppressive status quo and work hard to keep it in place. Some leaders of unions representing employees of equally oppressive state-operated institutions also fight efforts to give people with disabilities a real choice of where and how to live.
Activism is what brought ADA about.
More intense activism is what it will take to fulfill the ADA's true promise.
Let's use this anniversary to dedicate ourselves to taking action.
Mike Ervin is a disability rights activist with ADAPT.