Sunday, February 11, 2001

Aging parents of mentally disabled worry ...
Who will take care of my child?

States ill-prepared for growing number of retarded adults

By Debra Jasper
Enquirer Columbus Bureau

        COLUMBUS — Joanne Collins worries about dying.

        She thinks about it in the afternoon as she waits for her daughter to get off the bus.

        She wonders who will cook dinner for Maureen and if they will let her watch Pokemon and Power Rangers on TV. She prays they will care enough to help Maureen take a bath each night and tuck her into bed.

        Mrs. Collins and her husband have done all those things for their daughter since she was a little girl.

[photo] Cliff and Joanne Collins worry about what will happen to their daughter Maureen when they're gone.
(Michael E. Keating photos)
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        Maureen is now 52 years old.

        “To us, she's still a child,” Mrs. Collins, 76, says of her daughter, who is mentally retarded and has severe epileptic seizures. “I worry constantly. When something happens to us, what will happen to Maureen? This is just tearing me apart.”

        In Ohio, the Collinses and thousands of aging parents like them have reason to be afraid.

        As medical advances allow people with mental retardation to live into their 60s and 70s, their numbers are exploding. In the past decade, the population served by county agencies for the mentally retarded and developmentally disabled jumped 51 percent - from 37,000 in 1990 to 56,000 in 1999.

        But while the need for services has skyrocketed, the state has done little to help counties straining to keep up with demand. More than 12,000 people in Ohio, and thousands more in Kentucky, are on waiting lists to move into group homes or other special housing that provides staff to help with daily tasks.

        Many have waited for years, some for more than a decade. Thousands could find themselves in a new crisis soon as their aging parents die without first finding someone to care for them.

        And the waiting lists just grow longer.

        “There has been no expansion of residential care in Ohio in the last seven years, and families are truly losing hope,” says Charlie Arndt, executive director of the Ohio Association of County Boards of Mental Retardation and Developmental Disabilities.

[photo] Joanne escorts Maureen from the bus that carries her home from her daily workshop.
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        “The waiting lists are almost a joke,” he says. “People who are on them aren't going anywhere.”

The money isn't there
        Historically, Ohio has cared for people with mental retardation in institutions, such as nursing homes or the 12 state-run facilities that are staffed 24 hours a day. About 9,300 mentally retarded people live in Ohio's private and public institutions.

        Increasingly, however, people with mental retardation are seeking more independent living arrangements in apartments and group homes in communities.

        And that's where it gets complicated.

        Federal Medicaid money and state funds pay for people to live in institutions. But before Medicaid can be used for community housing, waivers from federal rules must be obtained, and the state must contribute part of the cost.

        Ohio officials estimate the state would have to come up with $300 million to match $450 million in Medicaid money to help 6,000 people who need waivers most. About 2,900 people currently have them.

        But with a slowing economy, and a billion-dollar education proposal before Ohio lawmakers, officials say the state can afford to help -- at most -- 1,000 people over the next two years.

        Even if they wanted to, officials say they couldn't just stop providing institutional care, save $551 million a year and use that money for waivers. Some cutbacks at state-run institutions are planned, but shutdowns are highly unlikely. Institutions have strong union and family support and care for many people who cannot manage more independent living elsewhere.

        Out of time

        As state lawmakers debate all this in coming weeks, officials urge caution. They cite problems that must be fixed before too many more people are drawn into the system.

        Federal auditors last year issued a scathing report on Ohio's group homes, saying state and county officials had failed to ensure that people with mental retardation are protected from abuse and neglect.

        There is little or no oversight, and “important safeguards are either absent or inadequate,” the report said.

        But solutions could take years. And aging parents with mentally retarded children are running out of time.

        “If we are going to wait to grow the system until we fix it, we're going to be dealing with a lot of people in crisis,” says Tom Eamoe, executive director of the Hamilton County chapter of the Arc advocacy group.

        Mr. Eamoe notes that three elderly parents in the Cincinnati area in the past two years were so distraught at the prospect of leaving behind their mentally retarded children that they killed them and then killed themselves.

        In 1999 in Fort Wright, 79-year-old Elmer Dedden shot and killed his 40-year-old son, Dale, who had Down syndrome.

        Mr. Dedden took his son through the Hardee's drive-through every day for double-cheeseburgers. He lovingly called him “Buddy.” But after his wife died, Mr. Dedden apparently became convinced there would be no one to take care of Dale.

        Mr. Eamoe warns that such incidents could increase as demand for special housing rises and shortages intensify. More than 4,500 people in Ohio care for mentally retarded relatives over the age of 41. In Kentucky, more than 8,000 people over age 60 care for mentally retarded family members.

        “Kentucky is no better than Ohio,” Mr. Eamoe says. "We have a lot of people desperately trying to meet overwhelming needs with grossly inadequate amounts of resources.”

"A very serious situation'
        People with mental retardation and their advocates are becoming increasingly angry that little is being done. They have protested on the Statehouse lawn, sent hundreds of letters to legislators and even mailed Gov. Bob Taft a 40-foot poster depicting their stories.

        “There is a level of grass-roots advocacy going on that I haven't seen in more than 10 years, and I think that indicates the intensity of the need out there,” says Jeff Davis, deputy director of the Ohio Department of Mental Retardation and Developmental Disabilities. “I think we have a very serious situation here.”

        Dave Zwyer, executive director of the Ohio Developmental Disabilities Council, a federally funded advocacy group, says demand for waivers is so high because many people with mental retardation either want to leave institutions or never want to live in them in the first place.

        “Institutions are better places now than they were 20 or 30 years ago, but there are still big differences between living in one and living in your own home,” Mr. Zwyer says. “In an institution, you have so little control over your own life. You have to go to bed every night at the same time. Everything you do is regulated.”

        Sixty-eight-year-old Stuart Warshauer, chairman of the Hamilton County Board of Mental Retardation and president of the Ohio Disabilities Council, understands firsthand why thousands of mentally retarded people prefer to live in communities.

        His 42-year-old daughter, Susan, lived in an institution before he received a Medicaid waiver in 1992 that helped pay for her to live in an apartment with caregivers. Before the move, Susan banged her head on walls, screamed constantly and ate leaves and paper. Now, he says, she likes to go out with her family for nice dinners. She's happier and well-adjusted.

        “Susan can't speak, but she can make her needs known,” Mr. Warshauer says. “But if you are taking care of 15 or 20 people at a time, you don't have time to worry about what she's trying to say.'

        The institutions do have supporters.

        Sonya Mawhorter, executive director of the Ohio League for the Mentally Retarded, a 7,000-member organization made up of families as well as union workers, says many parents want the kind of structure that institutions provide.

        She says parents also are wary of problems in community housing, such as those cited by federal auditors.

        “People are not warehoused anymore,” Ms. Mawhorter says. Called 'developmental centers,' the institutions “provide wonderful care,” she says.

        The U.S. Supreme Court weighed in on the debate in 1999, ruling that states, in most instances, must place the disabled in less-restrictive environments. The ruling came in a case involving two Atlanta women who wanted to move from institutions into community-based settings.

        The women's doctors successfully argued that they would best be cared for in community programs, even though they were mentally retarded and had been diagnosed with schizophrenia.

        The ruling eventually could have major ramifications for Ohio, which institutionalizes 48 percent of mentally retarded people it houses. That's higher than 37 other states, including Michigan, Wisconsin, California and New York.

        Mr. Arndt says the lack of Medicaid funds for community-based services is particularly hard for aging parents who opted years ago to keep their children out of institutions and don't want to put them there now.

        “Families who have saved the state tons of money by caring for their son or daughter at home for 40 years don't understand why, when they finally ask for help, it's not there,” he says.

Waiting for a crisis
        County officials say they often can't afford to provide community-based care to people with mental retardation until they reach a crisis. As a result, many families suffer trauma that could have been avoided.

        Parents die without knowing what will become of their mentally retarded children. Caseworkers struggle to make emergency placements that may not necessarily fit people's needs.

        And people with mental retardation -- already grieving and bewildered by the loss of loved ones -- sometimes end up living miles away from where they grew up.

        “Do we really want to take this person who has been living in our neighborhoods, shopping and going to church here all their lives, and say, "You can't live here anymore. You have to move?'” Ms. Long says. “I don't think so.”

        Cheryl Phipps, superintendent of the Hamilton County Board of Mental Retardation, says the mentally retarded are further traumatized by having to adjust on their own to new surroundings.

        “It's terrible,” she says. “When one parent dies or goes to the nursing home, it's a double trauma for the person left behind. The family is gone, and now they find themselves living with complete strangers. It's not something I would wish on anybody.”

        Ms. Phipps says Hamilton County spends $13 million each year to house people in apartments, group homes and other community-based care. But because county tax money cannot be used to obtain Medicaid waivers, the county must bear the cost alone.

        "It's very frustrating to think about the millions of federal dollars that are available but we aren't getting,” Ms. Phipps says.

        Discouraged by the lack of state money available to get waivers, the county agencies' association recently put forth its own proposal. The association says counties are willing to pool the money they raise from local tax levies and turn $300 million over to the state. The state could then use it to obtain Medicaid waivers.

        “They ought to embrace us and say, "Wow, this is wonderful. How can we get this done?'” Mr. Arndt says.

        Sen. Eric Fingerhut, D-Cleveland, agrees. He notes that institutions can cost $100,000 a year or more per person compared to community-based settings, which cost an average $40,000 per person per year. "The state's approach to this is just inexplicable," he says.

        State officials, however, point out that county tax levy money is an unpredictable funding source that depends on the will of voters. Ohio might have to come up with hundreds of millions of dollars each year to continue helping people if county levies fail or some counties decide to stop providing matching funds.

        “How do you assure a local funding structure stays in place, and what about tax equity?” asks Frank Blazewicz, an expert in the state Medicaid office. “People are just beginning to grapple with those issues.”

Painful choices
        As Ohio officials wrangle over solutions, Mrs. Collins and her 84-year-old husband, Clifford, wonder how much longer they can wait to find a home for Maureen.

        Mrs. Collins has heart problems. In the past year, her husband has broken both hips and had severe hemorrhaging, several strokes and a heart attack.

        Propped up on a flowered sofa in the couple's Westwood home, Mr. Collins is blunt about his future.

        “I could go anytime,” he says between coughs.

        Mrs. Collins is well aware of her husband's condition. The countless nights spent in the hospital, the trips to the doctor and constant fear of losing him as well as Maureen are starting to take their toll. Caring for them both means she can leave the house only a few hours each week when a neighbor takes her to buy groceries. Lines of exhaustion etch her face.

        And she's haunted by recurring nightmares.

        “Maureen is in trouble, and I keep running and running but I can't get there to help her. I wake up panicked and my heart is pounding,” she says. “But there is nothing I can do.”

        She would love to find a nearby apartment and caregivers for her daughter, and perhaps a roommate, but she doesn't hold out much hope of getting government funding for such care.

        She recently found a Medicaid-paid facility across town that might accept Maureen, but placing her there would force her daughter to leave her friends and the workshop she's attended every day for almost 20 years.

        It also would mean that Mrs. Collins, who can't drive and can't afford many $25 cab rides, could rarely visit.

        “It's like taking a girl who is 7 or 8 years old and telling her to go out on her own. I just can't do it,” she says.

        “These are terrible decisions to have to make, and I keep saying my prayers, I keep saying, "Please, dear God, give me help,'' Mrs. Collins says.

        “You've heard of throwaway children? Well, I feel like I'm being forced to throw my daughter away after 52 years.”

'A special kind of love'
- Aging parents of mentally disabled worry ...

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