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Disabled thank lawmakers

April 27, 2000
By: Michael Patrick Carney
State Capital Bureau

JEFFERSON CITY - Donna Lange says her husband was having trouble coping.

He asked Lange, who has multiple sclerosis and is blind, to go into a nursing home so that he "could get a break."

She entered a Pilot Grove facility, planning for a two month stay.

While there, Lange said aides often didn't respond to her cries for help, so she spent several nights sitting on the toilet. A male attendant sexually harassed her, she said.

Weeks passed before the mother of two received word from her husband.

I want a divorce, she remembered him saying.

Lange was stranded. She didn't know anyone. She was without options.

Lange spent months institutionalized, hoping to be taken back by her husband.

A little more than five years later she remains encumbered by her wheelchair and blindness, but empowered by her newfound independence.

It took years, but Lange now receives living assistance through the Personal Care Attendant program

Lange is part of the larger universe of disabled Missourians, each with a unique personal story of tragedy, hardship and strength.

Many are trapped in a steel cage on wheels. Others are trapped in the complexities their own mind. Regardless, those in attendance were united in the belief that the government should not automatically relegate them to institutionalization.

It was the PCA program, and others like it, that drew dozens of disabled persons to the basement of the State Capitol to thank lawmakers who supported a budget provision that makes portable $650 million in Medicaid money.

Under the budget provision, such persons will be able to choose between institutional and at-home nursing care.

"Missouri has been a leader in this process, insuring that people do have options. But there is much more to be done," said Candace Hawkins, national organizer for Freedom Clearinghouse, an Internet-based advocacy group for the disabled.

Options may be the law of the land.

The U.S. Supreme Court, with its June 1999 decision in Olmstead v. L.C. and E.W., held failure to provide a non-institutional option constitutes "discrimination based on disability."

Nursing homes and the like received about 73 percent of Medicaid spending for long-term care in Missouri during 1998, according to the Freedom Clearinghouse. The rest was spent on noninstitutional programs.

Lange and Milton said they want lawmakers to change those numbers to reflect the need for increased self-reliance and empowerment.

Nathan Milton, a 20-year old resident of Hamilton, is confined to a wheelchair. He chose to enter a nursing home after growing frustrated with the isolation of his family's small farmhouse.

"I got tired of living on the deck," Milton said, explaining why he made his decision.

However, Milton said he wants it to be his choice, not one driven by the whim of politics or pursestrings.