UPDATES

Nov. 1, 2004 - Officials investigate treatment of a woman in a Randolph group home.

April 20, 2004 - A key legislative committee is saying no to $132,000 more for the cash-strapped agency that oversees care of the retarded

April 16, 2004 - $20M more for salaries proposed for caretakers of mentally retarded

March 26, 2004 - State owes a promise of safety - Editorial

March 25, 2004 - A bill to increase into abuse stalls in the legislature

March 25, 2004 - Care for retarded people in Massachusetts has serious shortcomings - Editorial

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.
Read more ...

Case files

Graphic shows abuse cases.

Timeline

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.
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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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Case files

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.
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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.
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A tale of two families with retarded children in group homes.
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Case files

Graphic shows workload up, staffing down.

Family photo

David Malcolm died last year after the manager of a group home for the retarded allowed his anti-seizure medicine to run out. Show here with a newborn nephew in 1998.

SYSTEM FAILURES

For thousands who live
in group homes,
medical errors and neglect
are matters of life and death

BY CASEY ROSS ~ THE PATRIOT LEDGER
First of a three-part series

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.

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."

Alarming statistics

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 seven 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 21/2 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 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."

Second-class care

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.

SUMMARY | NEXT STORY

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.

YOUR VIEWS

We want to know what you think about this series and the issue of health care for the retarded. Here’s how to tell us.

Write: Your Views, The Patriot Ledger, 400 Crown Colony Drive, Quincy, MA 02169

Fax: 617-786-7393

Call: 781-340-3156

E-mail:
Please include your home address and telephone

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.