[Headline] Wheelchair protesters
[Subheading] Activists with disabilities travel so they can stay home
Yvonne Duffy

The 300 or so members of American Disabled for Attendant Programs Today (ADAPT) who stormed Gov. John Engler's residence and blocked entrances to the state Capitol in Lansing last week have dispersed, perhaps leaving in their wake more questions than answers.

Who are these Wheelchair "terrorists," as administration officials called them, who demonstrate against government leaders and the health care industry to seek less Medicare spending for nursing homes and more money for in-home care?

They are dedicated men and women, most with significant disabilities, who spend their own money to travel from all over the country to participate in ADAPT "actions."

Some cut their protest teeth back in the 1960s. Others have come more recently to the disability movement, and are new to the idea that they may be able to influence their destiny.

Many are former nursing home residents who have experienced firsthand the mind-numbing isolation, indifferent care (at best), and lack of freedom that inevitably accompany institutionalization.

The woman who screamed from the governor's driveway, "Let (lawmakers) lie all night in their own (waste)" probably is a former nursing home resident. She understands all too well that once one undergoes such degradation, one is changed forever.

The World Institute on Disability defines personal assistance services as "assistance of another with those tasks which individuals would normally do for themselves if they did not have a disability."

ADAPT maintains that adequate personal assistance services and other support could enable one of every 10 nursing home residents to live in his or her own home, resulting in a better quality of life and reduced cost to taxpayers.

[Image]
[Image caption] Wayne Becker of Austin, Texas, and Hector Racine of Brandon, Vt., were among protesters at governor's house. File photo by Julian H. Gonzalez/Detroit Free Press.

Why did ADAPT choose to turn the national spotlight on Michigan? As Republicans attempt to return more government power to the states, members of the Denver-based organization seek federal legislation that would unify the hodgepodge of services now administered by states.

Since Engler is perceived as an influential force in a national welfare reform, ADAPT wants to educate him on the need to include community-based personal assistance services in the final package. Engler also is regarded as a close associate of House Speaker Net Gingrich, who was targeted by ADAPT last May.

Gingrich has verbally endorsed the idea of national legislation governing personal assistance services. Yet he has not introduced in the House ADAPT's proposed Community-based Attendant Services Act (the measure's acronym, CASA, means "home" in Spanish). That bill, if passed, would make these services a reality.

ADAPT members believe people with disabilities are the real experts on what they need. An essential feature of the CASA bill is consumer control, based on need rather than age or specific disability. This approach to independent living contrasts sharply with the medical model now used by most states to determine eligibility.

To finance the proposed program, ADAPT calls for redirecting 25 percent of the current Medicare allocation for nursing homes. The proportion now earmarked for in-home assistance is less than five percent.

The need is crucial: A 1992 Families USA study reported that 64 percent of Americans who needed personal assistance services could not get them. In Chicago last year, personal assistants struck for a day to protest their low wages and lack of benefits, stranding the employers who relied on them to get out of bed.

Hiring honest, responsible people to provide personal assistance, for little more than the minimum wage and without health care or retirement benefits, is fast becoming next to impossible. In a healthy economy such as ours, these essential jobs are among the first to go unfilled, as demand for workers opens up higher-paying positions.

What drives ADAPT members to undergo financial expense and personal hardship as they demonstrate around the country year after year, to try to focus attention on an issue about which few Americans care?

They keep on because they are acutely aware--often from personal experience--of what most other people with disabilities can scarcely bear to acknowledge, because the specter is so horrifying. Each of us who must depend on personal assistance services to live is but a heartbeat away from a nursing home.

Yvonne Duffy writes the "Disabled in America" column for the Free Press

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