"Rewriting the Myths, Redefining the Realities"
by Larry Biondi
Eleanor is 75 years old and has Multiple Sclerosis. She requires round-the-clock personal assistance to live independently. But because she’s a senior citizen living in Illinois, she can’t get enough personal assistance hours and was forced to live in a nursing home. Freddy, 26, has Autism but can function well in the community. Nonetheless, he’s institutionalized in a nursing home because his parents died and no Home and Community-Based Services were available. Amy has a cognitive disability and needs assistance with managing her money and supervision in the community.
The key to freedom and independence for Eleanor, Fred, Amy and millions of others who are senior citizens or persons with disabilities is pending legislation. Senate Bill 1935, authored by ADAPT, allows Medicaid funds to be shifted from nursing homes to Home and Community-Based programs. Community Attendant Services and Supports Act (MiCASSA), replaces the cumbersome Medicaid waiver program.
In November 1999, responding to an outcry from the disability community, Senator
Tom Harkin (D-Iowa) and Senator Arlen Specter (R-Pennsylvania) introduced MiCASSA. In 1998, 44 billion Medicaid tax dollars were spent to keep people of various ages and disabilities in nursing homes and institutions. During that year, only 14 billion Medicaid dollars were spent on Home and Community-Based Services, or just 25% of the long-term expenditures.
Clearly, an institutional bias exists in this country. Under Title XIX of the Social Security Act, every state is required to have nursing home care but not community-based services. It’s cheaper for states to provide home care services than nursing home care, but politicians fail to see the light.
This institutional bias is what ADAPT has been fighting against for the last ten years. After winning passage of the ADA, ADAPT turned to the crisis in Personal Assistance Programs (PAS). In order to raise the consciousness of the public regarding PAS, ADAPT staged demonstrations across the country. Initially ADAPT demanded 25% of Medicaid funding for nursing homes be shifted into PAS programs. That struck a nerve with the American Health Care Association (AHCA), which is an influential lobbying group for the nursing home industry. Fearing the consequences of ADAPT’s demand, the AHCA rejected the proposal and sought an injunction blocking ADAPT demonstrations at their annual convention.
ADAPT, feeling that their demonstrations against the nursing home industry weren’t achieving their goals, changed strategies. Members of ADAPT, most of whom use PA services, drafted legislation and sought to have it introduced into Congress. They targeted then Speaker of the House, Newt Gingrich, to sponsor MiCASA (Spanish for “my home”). They camped out in front of Speaker Gingrich’s apartment in Washington and held demonstrations. After hounding Gingrich for three years, ADAPT got its wish. In June, 1997, the Speaker introduced MiCASA – H.R. 2020.
MiCASA-H.R. 2020 garnered bipartisan support and had 72 cosponsors in the 105th Congress; 47 Democrats and 25 Republicans. More than 500 national, state and local organizations gave their support to H.R.2020. The momentum for the legislation really took off.
The voice of the disability community was finally heard on Capitol Hill in March of 1998, when the Health and Environmental sub-committee of the Commerce Committee had a public hearing on MiCASA-H.R. 2020. Over 150 people with disabilities jammed the Congressional hearing room to demonstrate their support for the bill. They gave riveting personal testimonies of what it would do for them and their brothers and sisters. One person testified that he was forced to leave his home state to avoid institutionalization in a nursing home because his state did not provide adequate services. After the hearing, the bill lost its momentum and died in the 105th Congress. The resignation of Gingrich was another setback.
As we enter a new millennium, Senator Harkin introduced a new version of MiCASSA, giving people with disabilities and senior citizens REAL CHOICES about where they live. All the MiCASA supporters from 1997 remain on board. The major difference between the old and new version of the bill are the words “Attendant Services” and “Supports” to include cognitive assistance to the developmental disability community - hence “MiCASSA”.
The life span of a Bill is two years. Senator Harkin introduced MiCASA with 14 months left in the 106th Congress. That leaves little time for its advocates to join forces and urge its passage, especially when influential opponents with big bucks are banging on Congressional doors with the aim of killing this legislation.
The Voice of the Retarded, a parent group which advocates for the institutionalization of persons with developmental disabilities, opposes MiCASSA. They fear that the passage of MiCASSA will close institutions, leaving their children without a place to live. That won’t happen. MiCASSA is about giving people options; if people want to remain institutionalized, fine. But give us the liberty to decide.
It’s time that society realize that segregating persons with disabilities and senior citizens in nursing homes, institutions and group homes is no different than the segregation of African Americans in the 1950’s. Having a national PAS program is a civil right, not a privilege. To pass MiCASSA-S.B.1935 in the 106th Congress, or even the next one, requires the nation to achieve a maximum understanding of the rights of people with disabilities to live with freedom and independence. Its opponents have the money to wage a sustained battle against its passage, but we, the disability community have reason and right on our side. OUR HOMES, NOT NURSING HOMES!
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Copyright 2002 A&H Publishing Corporation