by Larry Biondi
Larry Biondi is a disability rights advocate.
May, 2001 -- The legislation known as MiCASSA (the Medicaid Community Attendant Services and Supports Act) is a life link to independence for people with disabilities stuck in institutions that want to get out. It's been on top of the agenda for ADAPT and other leading disability advocates who are trying to counter the institutional bias that exists in this country.
But the path it has taken has been slow.
Former Speaker of the House Newt Gingrich introduced the first version of the bill, then known as "MiCASA" in July 1997. The bill garnered bipartisan support in the 15th Congress and more than 200 national and state disability organizations and coalitions offered their support of the legislation. The groups met with and wrote letters to legislators and held workshops at conferences on the principles of MiCASA. Over 300 disability advocates packed a March, 1998 public hearing on the bill. But even with 72 cosponsors -- 46 Democrats and 26 Republicans -- MiCASA died in session.
Sen. Tom Harkin (D-IA) and Sen. Arlen Specter (R-PA) resurrected the legislation in Nov. 1999 as S.B. 1935 -- MiCASSA (the second "S" is for "Supports"). This version, at the suggestion of developmental disability and independent living groups, included other community-based supports besides "attendant services."
But S.B. 1935 never had the Congressional support and momentum that H.R. 2020 enjoyed.
What went wrong? It got introduced late in the session, and a kind of cat-and-mouse game ensued as senators held off co-sponsoring it, saying they wanted to wait until the Congressional Budget Office put a price tag on it.
ADAPT says the Congressional Budget Office has insisted that MiCASSA will "break the bank" -- people will try to use the program who don't really need it. Disability advocates tried to rebut that argument by pointing to community-based programs in Kansas and Oregon that they said saved millions of dollars.
Last May, Illinois Rep. Danny Davis, a Democrat, introduced a House version of MiCASSA, but, as with the Senate version, it gained little support.
How can the disability community forge ahead to change the Medicaid long-term care system, making MiCASSA the law of the land?
Change is occurring in increments, says national ADAPT organizer Bob Kafka. The fact that Congress appropriated $50 million last fall for "Real Choice Systems Change" grants and another $20 million for "Nursing Home Transition" projects is a testament to ADAPT's efforts and MiCASSA's momentum, says Kafka.. The "Real Choice System Change" language came from S.B. 1935, he says.
These grants "will improve the system, but will not fundamentally reform what is a broken 35-year-old institutionally biased system," he pointed out.
At their the recent winter meeting, the National Governors' Association adopted language in their position on long-term care that offered a spark of hope. "Beneficiaries generally prefer to live in their own homes and remain as independent as possible, yet current eligibility, coverage, and payment policies are biased toward institutional care," says their statement.
Such signals suggest to Kafka that "we're winning by state" -- that states are recognizing the injustice of the current long-term care system.
"It's like turning the Queen Mary," he says. "You can't see it, but it's turning."
Since MiCASSA was introduced, the number of openings for new clients to receive attendant services has increased in many states. Kafka believes this is a direct result of advocacy by grassroots groups.
"This issue isn't going to be won because of dollars and cents," Kafka continues. The disability community "has to build the political power to move it higher on the priority list of the Republicans and Democrats.
"This issue must be seen as bipartisan if passage is to be assured."
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