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Sept. 9, 2003 -- One hundred and sixty disability rights advocates from nearly 20 states are in the 6th day of their 14-day, 144-mile march from Philadelphia's Liberty Bell to Washington, DC to press Congress to pass the Medicaid Community-Based Attendant Services and Supports Act. The website www.freeourpeople.org is chronicling the event, with photos available to reporters for downloading, press releases, background information and profiles of marchers.
This is the first time people in wheelchairs have staged such a grueling and difficult march -- one reminiscent of the shorter marches undertaken by civil rights activists in the 1960s calling for passage of the Voting Rights Act. "We are marching for our lives, our freedom," Delaware marcher Daniese McMullin-Powell told the crowd on Saturday as the group paused in its march through the state. "I lost my whole 30's," 40-year-old Marlene Turon of Philadelphia told fellow marchers. "I was 31 when I went in and I just got out." Marcher Ursula Manley of Scranton, who turned 72 on Sunday, said, ""I have no respect for any nursing home." She told fellow marchers she'd been in a nursing home for 7 years.
Over 15 wheelchairs broke down on Day 1 of the march, but vans were dispatched and wheelchair repair available at the church in Glenolden, PA, where marchers camped. A significant number of the marchers have lived in nursing homes. Some still do.
The Medicaid Community Attendant Services and Supports Act, known as MiCASSA (S971 and HR2032), would redirect the focus of the Medicaid long-term services program from institutions to "home- and community-based services and supports" -- requiring Medicaid to pay for services in one's own home -- paying for assistance with bathing, dressing, meal preparation, money management and certain health-related tasks. The bill was first introduced in 1997 by then-Speaker of the House, Rep. Newt Gingrich (R-GA). A 1999 decision by the U.S. Supreme Court in Olmstead vs. L.C. and E.W ruled that keeping people in institutional settings when they could be served in the community constituted discrimination, and was therefore illegal.
Marcher Anita Cameron from Colorado told a reporter back home that she knew firsthand what it's like to live in a nursing home. "Twenty years ago, the civil rights advocate was committed to a mental institution for a year because she was diagnosed with epilepsy and the courts felt she was a danger to herself," wrote The Greeley, Co. Tribune's Matt Schuman. "She wants to make sure no one has to live in one if they choose not to."
Alice Bozeman told reporters of finding her husband, Ricky Bozeman, in his nursing home bed "lying in feces from his shoulders to knee." Bozeman kept saying their were "lizards" all over him. Alice discovered that it was mice crawling on him. His wife also found mouse droppings in his dresser drawers" "When you saw what the nursing home was doing to other people and to him it just floored you. You can't even imagine," said Bozeman.
"Would you want to live in a nursing home?" ADAPT spokeswoman Judy Neal asks.
Cheryl Hampson of Delaware told reporters she worries "that if she becomes ill after her children move out, she may be forced into a nursing home because of her disability. 'I'm very, very concerned.' "
The marchers are part of ADAPT, American Disabled for Attendant Programs Today, the group considered the activist, "direct-action" arm of the U.S. disability rights movement.
Follow the progress of MiCASSA at http://thomas.loc.gov/
More about MiCassa from ADAPT, the group behind the legislation.
OTHER ITEMS OF INTEREST:
The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.
Consumer Choice and Control:
Personal Attendant Services and Supports in
America: Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability
"Understanding Medicaid Home and Community-Based Services: A Primer" -- from the U.S. Dept. of Health and Human Services, available at http://www.aspe.hhs.gov/daltcp/reports/primer.htm
Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services
How States' "Nurse Practice" Acts work against consumer direction -- from the January, 1999 Ragged Edge magazine
Overview
Abuse of seniors under-reported, says study
The Institutional Bias of Public Policy
Consumer Direction in Personal Assistance
Study Validates Consumer Control's Superiority
In-home services: Implementing the Olmstead decision