The death of a 39-year-old Weymouth man last year called attention to serious problems with medical care for the 8,700 retarded adults living in group homes. The people caring for them are poorly trained and ill-paid for the challenge of meeting their complex health needs.
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Rachel Deline, a 50-year-old retarded woman, died after she was given a double dose of a powerful anti-depressant. No one denies that the system failed her, but no one has been held accountable.
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Many group home workers know too little English to understand instructions on giving medicines to retarded residents and fail a state certification test over and over.
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Tom Quinlan lives in Weymouth at a home for retarded adults. He spends weekends with his mother, Mary Quinlan,right, in Hanover.
very different experiences
BY SUE REINERT~
THE PATRIOT LEDGER
Mary Quinlan's son lives in a group home in Weymouth with other retarded men.
Ann and Bill Macdonald have a severely autistic daughter at a group home in Milton.
The two families' experiences with the system that cares for their children could not be more different.
Consider these contrasts:
Quinlan couldn't get the agency that formerly ran her son Tom's home to answer her questions about his health and his care, she says. Three years ago, when another company operated the home, Tom got another client's medicine by mistake, and when she took him home for a weekend last year, the new agency's workers sent a double dose of drugs.
"At the time of these things I get so very upset and frustrated I just want it to be over," Quinlan said.
In October, Tom had to move to another home when his residence closed. And this month a new agency took over the home, the fourth big change in Tom's life in less than three years.
The Macdonalds, on the other hand, enjoy a close and long relationship with the manager of their daughter Maryann's home and the agency that operates it.
Workers have never made a mistake with Maryann's medicines and they respond quickly to the Macdonalds' concerns.
They've seen only one new manager in the 20 years their daughter has lived in the home, Ann Macdonald said.
"We've been so fortunate," she said. "I'm not saying there haven't been problems, but we've always been able to reach (agency officials) and make changes."
The Macdonalds and Quinlan have never spoken with each other, but they do agree that the quality of their children's care depends largely on the staff at each home, especially the managers.
Other relatives have said the same. When the Department of Mental Retardation wanted to remove Community Group Inc. from running six South Shore homes in 2002, families of clients at a Weymouth home objected.
The state said Community Group had mismanaged the homes, but relatives said the long-time manager and workers gave excellent care.
Two months after the state hired South Shore Mental Health of Quincy to run the home in October 2002, a resident died after his prescription for anti-seizure medicine ran out.
Exercise in frustration
Mary Quinlan was no fan of Community Group - an employee of the agency gave her son the wrong medicine. She had high hopes when South Shore Mental Health took over.
"I thought, 'Now we're going to get someone good,'" she said. Instead it was an exercise in frustration, she said.
Under South Shore Mental Health, the manager of Tom Quinlan's home supervised two other homes and never returned her phone calls, she said. Higher-ups at the Quincy agency promised information but didn't deliver.
She said she could not find out when her son was going to the doctor or get the results of tests.
"Community Group would at least call you back and listen even if they didn't do what they said they would do," Quinlan said.
South Shore Mental Health officials declined to comment on Quinlan's complaints, but said last summer that the chief executive of the agency, Harry Shulman, would meet with her. Quinlan said she is still waiting.
"We're not going to talk about Mrs. Quinlan," agency spokeswoman Tamara Crosby said.
The Macdonalds had no problems getting answers from workers, managers and high-echelon officials at Human Service Options, the Weymouth agency that runs their daughter's home.
The manager of their home isn't assigned to other residences, making it easy to contact her, Bill Macdonald said.
"They have always been very receptive," he said.
When their daughter left their Quincy home in 1984 to move into the Milton residence, the Macdonalds were worried.
"We knew we should plan for a future while we were around to do it," Ann Macdonald said.
Their daughter is now doing extremely well, the couple said. She earns enough money to support herself assembling hot and cold packs for the healthcare industry at Employ+Ability, an unusual Randolph work program that pays market wages to disabled workers and gets no state money.
Maryann's care isn't perfect. Last year, the Macdonalds met with Human Service Options officials with a list of concerns such as "making sure Maryann is appropriately dressed and gets to work on time and gets picked up on time," Ann Macdonald said.
"They're not serious but we like to get to them before they get serious," she said.
The agency corrected all the problems after the meeting, Bill Macdonald said.
"We never want (the agency staff) to think we don't appreciate them," his wife said. "Her health and her care are good."
Mary Quinlan says she remains frustrated and skeptical. After South Shore Mental Health closed her son's home and moved him into another one, he was the only client there who did not need a wheelchair. She said workers did little more than wash and feed him, and never took him out for movies and other activities that he enjoys.
Now another agency is running the home, one Quinlan had a hand in choosing. But she still doesn't trust his caregivers or state officials to give her son the care he needs, she said.
"They can promise me the world," Quinlan said. "I don't believe anyone."
South Shore Mental Health fired a worker at a group home in Randolph in 2001 for ordering a female resident to grab a male residentís genitals. There was no criminal investigation because it was the retarded woman who committed the assault, and if the worker applies for a job at another group home, the employer would have no way to find any record of the abuse. Budget cuts have prevented the Disabled Persons Protection Commission from making its registry of abusive workers available to employers.
A resident of a group home operated by Vinfen Corp. in Rockland slept with a shard of glass from a window that had broken next to his bed in 2002. The worker who found the glass when he arrived that morning said he had trouble awakening the employee who had been on duty overnight. Because the resident was not hurt, then Disabled Persons Protection Commission did not investigate.
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ABOUT THE TERMINOLOGY
In this series we use the term "retarded" to describe people with mental handicaps because it is direct and commonly understood. We do so with respect and an understanding that some prefer such alternatives as mentally challenged or intellectually disabled on the grounds that retarded carries a stigma. Arguments on both sides of the debate are posted here on the web.