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Living alone
Many mentally retarded people don't get the help they need to live on their own. And the state and counties rarely check on private companies.

By Spencer Hunt and Debra Jasper
The Cincinnati Enquirer

Roy Harrison died alone in an empty field one bitterly cold December morning, covered only by blowing snow, a thin pair of underwear and one blue sock.

In the months before he froze to death, neighbors often found him outside shivering, unable to remember how to open the unlocked door to his Wilmington apartment. Sometimes, the 78-year-old man couldn't recall where he lived. He forgot if it was day or night.

The Clinton County Board of Mental Retardation was supposed to care for Mr. Harrison, who was mentally retarded and lived by himself. The county was supposed to keep him safe.

It failed.

County officials knew Mr. Harrison was losing his memory and growing frail but say they could only pay someone to watch over him 10 hours each week. "If we give all the money to one person we can't serve anyone else," says Marietta Hilt, residential director for the county board. "Those are the choices."

Like Roy Harrison, about 4,800 mentally retarded Ohioans live in their own homes and rely on home-care aides to help them take their medicine, shop for groceries and do other everyday chores. Taxpayers spend more than $200 million a year on private companies to provide this care.

But the state and counties rarely check on whether companies do even adequate jobs. The mentally retarded, on their own and at the mercy of untrained, low-paid workers, routinely die preventable deaths or are abused, neglected or robbed, a Cincinnati Enquirer investigation has found.

Problems are likely to get worse. As part of a national movement to give people more independence, the government will spend up to $400 million over the next three years to move thousands more impaired Ohioans away from aging parents or licensed facilities and into places of their own. By 2005, the number of mentally retarded people living alone in Ohio is expected to double.

They will live in the least regulated homes in the state. An Enquirer computer analysis of thousands of pages of state inspection reports, and interviews with more than 200 mentally retarded people, their families and officials, reveal that in 2000 and 2001:

Seventy-seven of Ohio's 88 counties failed to make sure people got to doctors' appointments or took their medicine on time. Last year in Henry County, a home-care nurse repeatedly failed to show up to give insulin shots to a mentally retarded man with diabetes, and he was given the wrong dosages at least 12 times.

Seventy-two counties didn't know if workers they hired to help people buy groceries, pay bills or do other basic tasks actually did their jobs or even showed up. Overburdened county social workers, some of whom check on 150 people in homes that are miles apart, don't visit for months or even years at a time.

Fifty-three counties failed to report or investigate abuse, neglect and other serious incidents in private homes, as required by law. Defiance County didn't tell state investigators that a 39-year-old paraplegic was found at home suffering from urine burns, skin infections and pneumonia. Nor did the county report that when the mentally retarded man's catheter fell out, workers took four hours to get him to the emergency room and his kidneys temporarily failed.

"It's scary," says Claudine Poch of the Hamilton County Arc, one of the few advocacy groups in Ohio hired by a county to independently monitor at-home care. "Staff aren't familiar with people's medications. They don't know how to handle seizures. A lot of people are lonely and depressed."

The right to choose

Mental retardation systems across the country are troubled. But Ohio is worse than many states at giving people the government care they're entitled to by law.

That's because Ohio relies heavily on county tax dollars to pay for care and a haphazard network of county mental retardation boards to deliver it. The result is an unwieldy system where care varies wildly from county to county.

The lack of money and oversight affects nearly everyone in the system, from those living in institutions to those in group and private homes. But officials say the risks are highest for people who live alone or with a roommate - in Ohio, 8 percent of all mentally retarded people.

"Their situations are more uncontrollable," says Dr. Andrew Eddy, medical director of the Ohio Department of Mental Retardation. If a mentally retarded person is harassed by a bully, there may be no one around to help. If he suffers a seizure, there may be no one to call a doctor.

Most counties are ill-equipped to watch over the 450 companies and 2,900 individuals they hire to help impaired people at home. Yet Ohio, like more than 40 other states, is experimenting with ways to give mentally retarded people more freedom to live on their own.

Seeds for this "self-determination" movement were planted in the 1970s, when advocates for the mentally retarded first started fighting to close down abusive institutions and move people into smaller group homes.

Now, advocates and even some mentally retarded people themselves argue that even eight-bed group homes are too institutional. They say the government should give mentally retarded people what they want; the chance to live on their own outside of institutions.

The U.S. Supreme Court agrees, ruling in 1999 that states must place developmentally disabled people in the least restrictive environments possible - a mandate many advocates embrace.

"Ask an elderly person where they would rather live, a nursing home or at home, and most of them will tell you at home," says Gary Tonks, director of the Ohio Arc, a statewide advocacy group for the mentally retarded. "People with mental retardation should have the same rights to choose where to live as anyone else."

Tunnel vision

To get services to more of the 12,000 mentally retarded Ohioans waiting for them, legislators last year freed up $400 million in Medicaid money to move thousands more people into their own apartments.

Advocates and officials paint a bright picture of the services that money will buy. They say many people thrive in community settings, where they can get jobs, play sports and get involved in their neighborhoods. They cite case after case where people are happy with the care they receive at home and would never want to live in an institution.

But an Enquirer review of state records, along with visits in the past year to dozens of homes from Cincinnati to the small Appalachian towns of Ogden and Somerset, show that at-home care is not always what advocates envision.

Until this year, for instance, 46-year-old Chuck Gallina lived in a run-down Cincinnati apartment in Mount Washington. Gang symbols decorated a cheap closet door and dead roaches lay matted in the floor.

During a visit last summer, Mr. Gallina told Hamilton County Arc supervisor Rebekah Elliot that he rarely saw a county social worker or private caregiver and didn't have anyone to take him to the doctor or help him cook or do other chores.

"I could use some more clothes," he added, his toes jutting from holes in his left sock. "I've been skimping on them, as you can see."

Mr. Gallina said he likes living on his own but needs help getting treatment for an ulcer, arthritis, allergies, migraines and other medical problems. A coffee table in one corner was filled with prescription bottles covered by crudely drawn stick figures. Mr. Gallina, who can't read, drew one stick figure inside a square - symbolizing a person in bed - to remind him to take that medicine only at night.

Cindy Wright, executive director for Community Supports, a Cincinnati home-care company, says her workers stopped helping Mr. Gallina because "Chuck made choices that made it unsafe to go to his apartment." Confidentiality rules, she adds, prohibit her from being more specific.

Mr. Gallina's mother, Rita Gallina, says a group of neighborhood men sometimes stole his Social Security money. "There's guys in there that threatened him and beat him up,'' she says.

Ms. Elliot, whose agency was hired to check on people and report any problems to the Hamilton County Mental Retardation Board, told the county that Mr. Gallina might be in danger and should move closer to his family. "When I looked in the refrigerator at Chuck's house I was a little choked up," she says. "He had four little Michelina's dinners. That's all."

In January, his family gave up waiting for the county to take action and moved him to Saylor Park near his mother. "He's in a nice apartment now," Ms. Gallina says. "I feel really confident in the people he has caring for him. They take him to the doctor and the store and anywhere else he needs to go."

Cheryl Phipps, superintendent of the Hamilton County mental retardation board, says the Arc's intervention with Mr. Gallina illustrates why outside monitors are needed.

"In any organization it's very easy to get tunnel vision. With Chuck, it's easy for staff to say, `Oh, that's just Chuck,' " Ms. Phipps says. "But outside people can say, `Yeah, that's just Chuck, but this is a serious situation.' "

Problems rampant

The problems endured by Mr. Gallina are common in private homes across Ohio.

State officials say they are trying to improve. But even with touted reforms, the state evaluated fewer than half of all county mental retardation boards in 2000 and 2001. Also during those two years, the state on average only checked on two people getting at-home care in each county.

Even those statistically small reports reveal widespread problems.

Regulators found that home-care workers in 77 of Ohio's 88 counties failed to give people medications, gave them the wrong drugs or didn't understand their side effects. Private agencies in 42 counties hadn't checked the criminal backgrounds of their workers or had failed to provide CPR, first-aid or other mandatory training.

Miami County, for example, didn't report that a mentally retarded woman had so many bruises, scrapes and rug burns that her county social worker said she "looks like WWIII." In Lawrenceburg County, a social worker said she would like private companies to report incidents to the county but "that has not been worked out yet."

And in Ashland County, a social worker was responsible for 150 mentally retarded people. Another worker oversaw 100 people - impossible numbers to check on.

Ken Ritchey, director of the Ohio Department of Mental Retardation, acknowledges that major problems exist but says the state is pushing counties to do better. He says the state will soon start withholding Medicaid money from counties that don't lower caseloads and keep people safe.

"We're telling people they've got to improve things, and we're going to hold them accountable," Mr. Ritchey says. "We've had a system in place where the state hasn't provided oversight for more than 20 years. You've got to start somewhere."

`They do not care'

Investigators don't just criticize counties. Their reports frequently fault the private companies hired by counties to provide hands-on care.

One of the most blistering state reports centered on care given a Defiance County man by Specialized Alternatives for Families and Youth, a private Delphos company that last year provided at-home care to 35 people in 16 counties.

The state report and the lack of county follow-up show how people can struggle on their own for years without the help they need. In most cases, confidentiality rules let counties keep secret whether they fix or ignore problems.

In this instance, the report described Thomas Finkenbiner, a 39-year-old mentally retarded paraplegic who lives in his own home and needs help with his catheter, colostomy and other medical conditions.

A nurse visiting Mr. Finkenbiner in November 2000 filed a report with Defiance County saying she found him so "wet (with urine) from head to toe" that his skin was breaking down. She said a Specialized Alternatives worker declined to change his bedding and told her, "All I can do is hand him things."

Two months later, the nurse again visited Mr. Finkenbiner and reported he had urine burns and his catheter was leaking. In April 2001, the nurse reported that "T.F.'s body is going to pot" and questioned whether his home-care worker cleaned him enough.

State officials noted that the county failed to report several major incidents to the state, including that Mr. Finkenbiner had been hospitalized four times in 2001 for a blocked catheter, skin infections, pneumonia and kidney failure.

Mr. Finkenbiner repeatedly told investigators the county board "acts like they do not want to help me."

"I just get the feeling they do not care," he said.

`Our hands are tied'

Specialized Alternatives chief executive Druann Whitaker says it's not a matter of not caring. Despite the state's serious concerns about Mr. Finkenbiner's health and safety, Ms. Whitaker says neither state nor county officials ever contacted her company about the problems.

Ms. Whitaker declined to be interviewed, but in a letter to the Enquirer says the company deals promptly with lapses in professional behavior by staff and that it plans to "refute the documented findings'' in Mr. Finkenbiner's case. She adds, "Unfortunately, the confidentiality owed to our clients prohibits (Specialized Alternatives) from providing your office with a copy of our response."

County officials acknowledge they don't have a strong system in place to ensure such incidents don't happen again to Mr. Finkenbiner or anyone else.

Rick Edmonds, superintendent of the Defiance County Mental Retardation Board, says it was difficult to protect Mr. Finkenbiner because he initially declined to fire Specialized Alternatives. Under self-determination, people with mental retardation are allowed to choose the agency that cares for them.

"We have no control over these (care) providers for the most part," Mr. Edmonds says. "The system is so consumer-driven that if a (mentally retarded person) makes a bad choice, it's awful tough for the county board to correct the situation." Counties also are limited to choosing among the home-care companies that operate in their regions, and the quality varies wildly, he says.

Mr. Ritchey, director of the Ohio Department of Mental Retardation, says what happened to Mr. Finkenbiner is "unacceptable" and "shocking." He faults the county.

"People can make bad choices, but that is not an excuse," he says. "When they do (make a bad choice) counties have the right to step in and say this is not tolerable. They can't let somebody stay in a home if they are at risk."

Eventually, Mr. Finkenbiner decided to try a new home-care company. On a hot Thursday afternoon last month, he explained that his health has improved although he worries about having enough money to replace a crumbling roof and pay for repairs to his 1995 wheelchair-accessible van.

"Nobody cares about this stuff," he told the Enquirer. "But I've been worried about it for years."

Still, his small, blue ranch home is clean and he says his new agency, Champaign Residential Services Inc., is doing "pretty good." Workers change his sheets regularly and take him to the grocery and doctor, he says. He just got a free membership to the YMCA and hopes to start working out.

"I'm not against the county or anything," he says. "I'm just trying to get by."

`Very disturbing'

The problems experienced by Mr. Finkenbiner and others don't surprise Ms. Elliot, whose Hamilton County Arc team routinely documents a lack of medical care, missed medications, untrained staff and other problems with at-home care.

During her visits to several homes around Cincinnati, private agency staff workers admitted that they didn't know the side effects of medications they dispense each day.

In one home, a worker told Ms. Elliot he had recently taken a mentally retarded man to a rock concert and then lost him for several hours. "He went to the bathroom and never came back," the worker said, laughing. "Finally I was like, `Wonder what happened to him?' "

Ms. Elliot and others say workers are in such high demand that supervisors often work two or three shifts just to fill in when employees call in sick or quit. Half of all private home-care workers - who earn an average of $8.50 an hour, barely fast-food wages - leave their jobs each year.

Robin Brenner, another Arc social worker, says the difficulties in finding good workers only underscore the importance of having outside monitors in every Ohio county.

"I visited one elderly man with diabetes and congestive heart failure, and the staff worker who'd worked with him for eight years didn't have a clue about a diabetic diet," she says. "It's very disturbing."

Hamilton County won't release the names of people visited by the Arc, but in one case, Edward Frey gave the Enquirer permission to review Arc documents related to him and use his name.

Mr. Frey, 47, now lives in a licensed group home in Cincinnati, but for years he lived in his own apartment while working at a doughnut shop and a bookbinding factory.

"Ed's house was extremely unsanitary," a 1997 Arc report says. "The linoleum floor didn't look as though it had been washed in months. The kitchen tabletop was filthy and had dried food on it. There were dirty dishes on the countertops. The bedding was soiled and stained."

The report says Mr. Frey frequently paid fees for writing bad checks and ran up massive credit card bills ordering a Nordic Track exercise machine and other items from television shows.

"I'd see stuff on TV I wanted and got myself in a bind. The bills ended up getting out of control," Mr. Frey says.

Cami Short, program director for Habilitation Opportunities of Ohio, which provided care for Mr. Frey, says the company knew he was misspending money but there was nothing anyone could do.

"It's his right to do whatever he wants to with his money but finally, he was like, `Oh God, how am I going to pay my bills?' "

Eventually, Mr. Frey started forgetting to take blood pressure medication and had a minor heart attack. "My blood pressure was so high it had reached the stroke level," Mr. Frey says, shaking his head. "A lot of times I was stressed out. I was all worried and nervous. I'm lucky to be alive."

'No doubt he'd be dead'

Spend a day with Jo Ann Mason and it's easy to see why improving oversight is critical. Ms. Mason is a guardian with Advocacy and Protective Services, a state-funded agency that provides guardians to more than 3,400 severely mentally retarded Ohioans in institutions, group homes and private homes.

One of her first stops is to see Dennis Perry, a 58-year-old mentally retarded man who lives with a roommate in a modest ranch home in Perry County in southern Ohio. Mr. Perry has kidney and liver trouble and other serious medical problems. He follows a strict diet and takes psychotropic drugs.

Yet Mr. Perry is quick to tell Ms. Mason that he had just been to a party over the weekend in Columbus with a female worker from an agency hired by Perry County to watch over him. "They (the worker and her friends) were drinking beer. I was drinking, too," he says excitedly.

A report on the incident submitted to state investigators revealed another caregiver arriving at work that weekend found two unfamiliar men asleep in Mr. Perry's living room. The report showed one of the men was sleeping next to the female staff member.

The worker who reported the incident suspected drinking was involved. "The one man on the couch wouldn't wake up, so (the female staff member) and the other man carried him to the door,' " the report said.

Residential Inc., the private agency, fired the staff worker. Ms. Mason says the incident shows why mentally retarded people getting at-home care sometimes need guardians, or at least outside monitoring.

"Dennis is psychotic," she notes. "I would say that for him, drinking is a real problem."

Ms. Mason says a guardian is critical for Mr. Perry. "There's no doubt he'd be dead without one."

Joel Yeager, executive director of Residential Inc., of New Lexington, says there was no evidence that Mr. Perry had been given alcohol. He says the incident with Mr. Perry should never have happened but it's difficult to find good workers. His company pays $7 an hour and expects people to work on nights and weekends.

"You can imagine what kind of people we have applying for those jobs," Mr. Yeager says. "The pay's not great. The hours aren't great. They have to change adults' diapers, they might get hit or hurt. You tell me what our work force looks like. We do the best we can."

No one did anything

Mr. Harrison, the man who froze to death, had no guardian like Ms. Mason to ensure he got enough attention and good medical care.

Clinton County records show that workers went for days in 1998 without checking on the man. In the summer of 1999, he was confused about his medication and often forgot to take it. Fluids seeped from sores on his legs, a rash covered his body and he shook periodically.

An October 1999 memo from Ms. Hilt, the county board's residential director, says a worker with Residential Management Systems had checked on Mr. Harrison on Sept. 28 and saw that "Roy's legs were really bad. She had noticed the stains in his sheets and socks."

The worker took no action, however. Ms. Hilt's memo said that Mr. Harrison was allergic to rubber but had been wearing compression socks with rubber content for several days. She took him to the emergency room.

Ms. Hilt says efforts to get help for Mr. Harrison were "very, very frustrating, and Roy is just one of the people in the system we have had to fight to get care for."

Paul Kaifas, regional director for Residential Management Systems, a private agency in Cincinnati, says his company broke off its contract to care for Mr. Harrison two months before he died because the county couldn't afford to pay for the care he needed. "Roy definitely had some fragile medical issues. We were very concerned about Roy," he says.

He says Residential Management asked the county to do more for Mr. Harrison. Because of "differing opinions about the kind of care people needed," Mr. Kaifas says his company also terminated contracts to care for nine others and left Clinton County.

The county then hired IHS Services Inc. to care for Mr. Harrison. An official with IHS declined to comment.

By November 1999, records show Mr. Harrison was hallucinating and complaining of nightmares. Ms. Hilt says she knew something had to be done but the county couldn't pay someone to watch him every day. "He would have been on a waiting list (for 24-hour-care). I have 42 people on that list, and Roy would have been somewhere in the middle," she says.

Ms. Hilt says she wanted to move Mr. Harrison to a group home, but he had once lived in a state institution and didn't want to go back. She decided in November it might be time to override Mr. Harrison and applied to get him a state-funded guardian.

While the request was being processed, Mr. Harrison wandered into the snow and died.

"Unfortunately," Ms. Hilt says, "the wheels turn slowly."

Mr. Harrison's neighbor, Robert Quigley, is angry about his old friend's death, saying it was both tragic and preventable.

Standing at Mr. Harrison's graveside one rainy Monday afternoon, Mr. Quigley explained that everybody loved "Rockin' Roy" - who whiled away his days sitting in the downtown square, waving at passersby and listening to his boom box.

"We kept telling people he was forgetting things, that sometimes he couldn't even remember how to get into his apartment," Mr. Quigley says, choking back emotion.

"But no one ever did anything about it."


 
Inside the Report
Living alone
Many people don't get the help they need to live on their own.

At last, a decent home
Pete Angler lived in danger for years, but now he's safe.

Flexibility yields solutions
Some counties tailor programs to individuals who need help.

Hamilton County reports
Open-to-public inspections help families choose providers for loved ones.

Who's accountable
The agencies and departments charged with prosecuting crimes against the mentally retarded.

What's been done
Find out what's changed since the first two installments of Ohio's Secret Shame

Photographer's album
A visual journey into the lives of Ohio's mentally retarded.

For Pete's Sake
A photo essay of Pete Angler and his advocates' 10-month struggle.

Ohio's Secret Shame

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