On June 24, 1997, then Speaker of the House Newt Gingrich introduced the MiCASA bill to the cheers of millions of Americans living with disabilities. The legislation—lobbied for by a consortium of disability rights groups—was intended to eliminate the institutional bias that made it difficult for individuals to use their Medicaid payments for community-based attendant care instead of nursing homes. Despite bi-partisan support, the bill never made it to a vote.
Fast-forward 11 years and the problem of institutional bias not only still exists, but continues to grow.
According to recent Congressional testimony by Andrew J. Imparato, president of the American Association of People with Disabilities (AAPD), there are currently over 53,000 individuals with developmental disabilities on waiting lists for community-based care. When all individuals with disabilities are included, that number rises five-fold.
“Today, in America, the land of the free, we have over a quarter of a million people in captivity—living in institutions for the sole reason that the federal money stream for the services they require only provides services in those environments,” Imparato said, at a Congressional hearing on July 10, 2007.
Imparato and other disability advocates are urging Congress to pass The Community Choice Act, a piece of legislation that is similar in spirit and intent to MiCASA. The fundamental principle touted by the bill’s advocates is a simple one: disability benefits should be allocated towards care by the person who receives them, not by the government.
“This legislation gives people a choice in every state about whether or not they want to live in a nursing home,” says Shelia Dean, an ADAPT activist who spent two different stints in a nursing home. Dean eventually received assistance from the Atlantis community in Denver, CO, a non-profit organization that helps those with disabilities transition from nursing homes to community-based care. The second oldest independent living center in the nation, the center is cited by many as a model for how the Community Choice Act could improve the lives of those with disabilities at a national level. It uses a mix of government funding, grants, and donations to provide “an alternative to nursing homes.”
The center shares a building with ADAPT, and many of its members that were integral in the push for accessible public transportation in the early 90s, are now working for the passage of the Community Choice Act. “Right now, getting people out of nursing homes who want to live in a community is our number one issue,” says ADAPT member Dawn Russell.
Besides the benefits to the disability community, the legislation has the potential to save taxpayers billions of dollars as well. A 2006 study conducted by the University of California San Francisco and the University of Maryland found that when compared with Medicaid institutional care, home-and community-based waivers were on average $43,947 cheaper per participant. Currently, 63% of the $94.5 billion that Medicaid allocates for long-term care goes towards institutional care—making the argument for The Community Choice Act a fiscally sound one.
But, does the bill have the Congressional support it needs?
Introduced by Senator Tom Harkin (D-IA) and Congressman Danny Davis (D-IL), the legislation currently enjoys widespread support with 82 co-sponsors in the House and Senate. It’s also supported by Democratic presidential candidates Hillary Clinton and Barack Obama, making proponents optimistic that the bill will become law under a Democratic president. However, in order to get through Congress, the legislation will need to be prioritized—a tough task considering the likelihood of the flailing economy and the Iraq war to take precedence in the next administration.
Senator Arlen Specter (R-PA), one of the bill’s earliest proponents, has made the urgency of the situation clear. “The time has come for concerted action in this arena,” Specter said.
For the hundreds of thousands of Americans in nursing homes, Mr. Specter’s words provide hope that a new, progressive philosophy for dealing with long-term disabilities is just around the corner.
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