Day 1 - March 20, 2004
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.
Graphic shows abuse cases.
Day 2 - March 22, 2004
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.
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.
Day 3 - March 23, 2004
When retarded people suffer mistreatment and abuse inside group homes, too often no one outside takes action or even notices, advocates and family members say.
Group home workers responsible for recognizing signs of illness in retarded adults and for giving them medicine are paid about the same as cashiers at fast-food restaurants.
A tale of two families with retarded children in group homes.
For thousands who live
Click to view graphic that shows abuse cases on the South Shore.
A state investigation determined that Malcolm died after the manager of a home operated by South Shore Mental Heath, the largest social services agency on the South Shore, failed to fill a prescription for stronger medication to control his seizures.
Such lapses are not isolated occurences at group homes in Massachusetts. Although deaths are rare, medical errors and neglect are growing problems for the 8,700 retarded adults living in the care of agencies paid millions of taxpayer dollars each year to manage their daily needs.
"I want to see change, but nothing ever really changes the way you want because my brother is never coming back," said Malcolm's sister, Lisa Malcolm. "I just want them to make things right so this doesn't happen again."
A Patriot Ledger review of state investigation reports for the past four years and interviews with care workers, advocates for the retarded, investigators and others has revealed that the state's system of care is falling short on multiple fronts.
Among the findings:
In an interview, the commissioner of mental retardation, Gerald Morrissey, said the cases of abuse represent a small percentage of care provided to retarded adults every day.
He said his department is working with the University of Massachusetts at Worcester to improve "health care access and coordination" throughout the group home system.
"It's a big issue for us," he said.
Many advocates for the disabled say there are too many complex medical issues for care workers to manage, too many opportunities for lapses that can cost lives.
Massachusetts began its transition to group home care in the early 1990s when the state hospitals that provided care for most of the state's retarded adults were closed.
Typically built for four to eight people, group homes offered the promise of more personalized care and independence for residents, and many homes still earn praise for their emphasis on making retarded adults part of their communities.
The state is paying private agencies $448.7 million to run group homes this year. Residents pay 75 percent of their income from Social Security and other sources toward rent, food and other expenses.
Advocates and group home operators themselves say the budget does not provide enough money to hire professionally trained workers to manage residents' myriad medical needs.
More than 95 percent of group home residents need drugs to treat conditions ranging from behavioral disorders to chronic illnesses. On average they take 12 doses of medicine every day.
But the people responsible for administering those medications and recognizing symptoms of overdose or illness are not nurses. In most cases, they took a 16-hour training course and passed a multiple-choice exam.
"If they were only giving routine medications to routine people it wouldn't be so bad," said David Schildmeier, spokesman for the Massachusetts Nurses Association, which wants nurses to administer drugs to group home clients. "But we're talking about people in these group homes who are severely compromised. It's very dangerous."
Advocates for the retarded say that when group home residents go to a physician or a dentist, they may get second-class care. Steven Perlman, a Lynn dentist who supports training doctors and dentists to care for the retarded, says treatment has focused more on social services and less on health care.
DEBEE TLUMACKI/The Patriot Ledger
|Lisa Malcolm with a photo of her late brother, David Malcolm, the victim of a medical error at a group home for the retarded. He suffered fatal seizures after his prescription ran out.|
"As services evolved, our attention to health lessened," he said. "We've done a lot, but the health part has just not kept pace."
A University of Massachusetts Medical School report says certain illnesses often go untreated in retarded people, such as ear infections, stomach problems, infected teeth and osteoporosis.
David Malcolm relied on his caregivers to manage his medication and help control worsening seizures. But on Dec. 27, despite warnings from one caregiver, the medication ran out.
The state investigation report described the chaos surrounding his final hours of consciousness. The seizures came at 4 a.m. and again at 6, causing his teeth to clench as his body gyrated violently. The final attack struck at 8, causing Malcolm to collapse to the floor.
"He had a cut on his forehead above his nose and was bleeding, biting his tongue and shaking," the report said.
"(The worker) held him in his arms to try to control the bleeding, held his face to try to stop him from biting his tongue and was also holding the phone talking to 911."
At South Shore Hospital, Malcolm slipped into a coma. He died six days later.
In 2001, the manager of a South Shore Mental Health group home in Quincy waited more than a month to take a retarded, deaf resident to the doctor to treat a painful foot infection. The manager refused to be interviewed by a state investigator.
Workers at a Vinfen Corp. group home in Weymouth ignored massive bruising on a resident's chest and left arm for at least three days in 2002. Doctors determined that he had a broken collarbone.
A retarded woman living at a South Shore Mental Health group home in the Fall River area collapsed in May 2002 when her pacemaker battery ran out. It had not been tested in two years because the only worker who knew how had left.
A resident of a Vinfen group home in Boston was hospitalized in 2001 after she overdosed on pills ordered for a former client who had left the home three years before. The medicine should have been discarded but was left in a desk drawer. The remorseful manager took full responsibility for the mistake.
In 2001 a Growthways Inc. group home in Brockton put one client on the wrong van to go to his day program. He was brought back to the home, but was locked out because the workers had left.
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Write: Your Views, The Patriot Ledger, 400 Crown Colony Drive, Quincy, MA 02169
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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.
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