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MRDD funding change has many people worried

COLUMBUS (AP) - After being warehoused for decades in state institutions - years went by when she rarely left her room - Elaine Gaines is out in the world.

Despite having to rely on a motorized wheelchair because of cerebral palsy, Gaines paints regularly, works at Goodwill, goes to Columbus Clippers baseball games and faithfully attends Westgate Baptist Church on Sundays.

Ask her whether she's happy, and a smile sneaks across her lips.

Maybe it's an involuntary twitch caused by her lifelong battle with her disability. It could be, however, that Gaines, at 72, finally has found a measure of joy in her life.

''I wanna stay here. The people are nice,'' Gaines said of her home, Park West Court Apartments, a specialized-care facility for 70 people with mental retardation and developmental disabilities.

But change could be in the works for Gaines and about 7,800 others who live in 387 similar ''intermediate-care facilities'' as well as 10 remaining state developmental centers.

Funding for Park West and the other facilities would shift under a proposal included in Gov. Bob Taft's $51.3 billion budget unveiled last week.

A new Medicaid ''waivers'' program would mean that about $655 million that now goes directly to Park West and similar private and nonprofit facilities would be channeled directly to clients.

The state says that would allow the clients to choose other providers and services or stick with the ones they have.

However, many people in the facilities are worried that the change would narrow, rather than expand, choices and could result in the loss or delay of vital services.

Worse yet, some fear they would be forced to move.

State officials say that isn't likely to happen, but the lingering uncertainty - a blank slate of unknown options - frightens this small universe of people, their families and their caregivers.

Jane Robinson, director of human resources at Franklin University, has a brother at Park West and three other disabled siblings at a similar facility in Fairfield.

She fears getting a phone call like one she got a few years ago when she learned that the Athens County facility where her brother lived was closing. She had 30 days to find somewhere else for him to live.

''I have no idea what I would do,'' Robinson said. ''My brother requires 24-hour care. I'm not going to put him out on the street.''

Kenneth W. Ritchey, Ohio's MRDD director, defends the waivers plan and promises that no one will go without care.

Language setting the change in motion is part of Taft's proposed budget, although it would not take effect for two years.

''I feel we're better off when the customer controls the system,'' Ritchey said. ''The idea is giving people control over their choices.

''Nobody has been put on the streets since I've been director. That isn't going to happen.''

Ritchey said the state's hand was forced by a 16-year-old court case, Martin v. Taft, filed for children and adults who wanted to receive MRDD services in the community rather than state institutions.

The case is pending in federal court, but a proposed settlement would shift money away from intermediate-care facilities.

''I'm not saying everything's perfect,'' Ritchey said. ''I can't guarantee that everyone will get every penny'' of the money they are now receiving for services.

''We've been struggling to change the system, shifting it to a person-oriented approach with more self-determination.''

Taft administration officials don't call it a belt-tightening measure but acknowledge it might save money. For example, it's unlikely that all current services - including room and board, which costs about $65 million a year or $11,563 per resident - would be covered by a Medicaid waiver. Presumably, the room and board would come from ''personal resources,'' typically an individual's Social Security benefits, Ritchey said.

Cutbacks large and small have rolled over the MRDD system for the past four years. A tiny ripple in the $50 million worth of cuts made during that span ended a $50-per-resident annual clothing allowance (it was once $200) that residents often used to buy winter coats. That will save the state $250,000 a year in the current budget.

Although it's rare when people hope the state remains in charge of services, many caregivers fear the unknown even more.

Nearly eight years ago, Lee Willis, of Gahanna, faced the decision about how to care for her brother, Nate Davis, 52. Nonverbal and severely disabled, Davis lived with his mother in Cleveland until she became ill and died.

He now resides at Park West; Willis is his legal guardian.

Switching to a waiver program, with its uncertainties, is ''a scary thing to think about,'' she said during an interview at Park West. ''Things have been going well. This will open up some old wounds that happened during my mother's illness.''

Davis, nattily dressed in a black suit and tie for the interview, sat quietly by his sister's side. Willis said he has a big CD collection and is fond of Motown music, especially the Temptations.

Few state lawmakers know the tender underbelly of the system better than Rep. Merle Grace Kearns.

The veteran Republican from Springfield, now the House majority floor leader, formerly headed a human-services subcommittee.

The legislature rebuffed Taft's proposed funding shift during the budget battle two years ago.

Kearns said she doesn't have all the answers but argues that Taft's plan ''is an effort to empower consumers more and give them an understanding that the money is their money.''

''We do not want to do anything to damage any of the residents or make their lives more unsettled. There's nothing that says they have to leave. … If you love where you are, stay there. That's your choice.''

That's more easily said than done, said Maureen M. Corcoran, head of the Ohio Provider Resource Association, the group representing 135 care facilities - many of them nonprofit - that look after from four to more than 100 individuals.

Corcoran said a major concern is that the existing Medicaid community-waivers program, which primarily covers MRDD services for those living at home, is riddled with problems. Federal Medicaid officials, in a series of critical letters last year, warned state officials that hundreds of millions of dollars are ''at risk'' unless the state gets its act together.

''Things are not going well on the community side,'' Corcoran said. ''There is no track record to say, 'Sure, we trust you.'''

Corcoran and other representatives shared their concerns recently during a meeting with the governor.

''We're talking about a very significant impact on the lives of 7,700 people,'' she said. ''At this point, the administration can give no details on how it will affect these people's lives.

''This is not an anti-waiver conversation. We support waivers and choice, but not at the cost of clients and caregivers.''

Further, there are long waiting lists for some waiver services, Corcoran said.

Marla Root, of Lewis Center, has been on such a list for two years, trying to obtain services for her son, Eli, 8, who is autistic. She said she is 300th on the list in Delaware County, after starting out 325th.

''We're really starting to struggle,'' she said. ''I don't think these community services are helping people.''

Mary Levino, a social worker at Park West, hopes change, although inevitable, will not mean a setback for Gaines. Levino says she doesn't play favorites, but her admiration for Gaines is obvious.

''Look at her strength, her talent, her personality. She's one of the special people.''

Born in Hamilton County in 1932, Gaines was institutionalized at an early age, first at the Gallipolis Developmental Center and later at Orient.

She spent some time in a Dayton nursing home before coming to Park West six years ago. Her only family is a brother in Chicago.

Cody Miller, an instructor at the Art Bridge Studio, operated by United Cerebral Palsy, said Gaines has a wonderful talent for folk art.

Reserved and often unable to express her feelings verbally, she speaks through art, Miller said.

She paints small areas - about the size of the circle made by closing a forefinger on the thumb - with the aid of a device strapped to her wrist and forearm.

Miller's favorite Gaines painting is Canary in a Coal Mine, showing a bright yellow bird in a cage - all on a black background.

''Her paintings have an immediacy to them, a spontaneity, a certain kind of urgency to get out.''

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Information from: The Columbus Dispatch, http://www.dispatch.com