Source: The Patriot Ledger - Quincy, MA
Date: March 23, 2004
SPECIAL REPORT: RETARDED AT RISK
The day his heart stopped, David Malcolm woke at 8 a.m. and took his pills as usual. His seizures were getting worse, but he didn't know why. He didn't know some of his pills were missing or that he had been taking the wrong dosage for weeks.
Malcolm, a 39-year-old resident of a state-funded group home for retarded adults, was not focused on the medication mistakes of his caregivers.
He was focused on music. It was a passion that permeated his days, especially around Christmas. He listened to carols, classical songs and rock. His sister says music was his way to reach outside his disability, to show people that his life, for all its limitations, was still vibrant.
But a few days after Christmas 2002, that life fell silent. Early on Dec. 29, Malcolm suffered three violent seizures at the Weymouth group home where he lived. The last one left him bloody and shaking uncontrollably on a bathroom floor.
Less than a week later, he was dead.
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:
Since 1999, medical errors by low-paid care workers in group homes have caused deaths and life-threatening injuries. Nine recent abuse and neglect cases on the South Shore have involved medical error, including the one that resulted in Malcolm's death.
Overall, investigators statewide have substantiated more than 260 cases of abuse in each of the last five years. Since 2002, three people have died because of abuse or neglect and nine other deaths are under investigation.
Budget cuts are threatening efforts to improve care and oversight. State appropriations to help improve pay for care workers have stagnated, and cuts in funding for the Disabled Persons Protection Commission, the agency that investigates abuse, have caused the staff of investigators to shrink from 15 in 1997 to three this year.
The backlog of investigation reports has increased fourfold in past 2? years. The commission refers 90 percent of its investigations to the agencies it was created to oversee, including the state Department of Mental Retardation.
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 25 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 state certification 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.
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.
This story is from a news release issued by the American
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