Toby lost her life

company caring for her lost its license

Safeguards meant to protect the disabled in Maryland group homes failed this time.

August 01, 2004|By Sara Neufeld | Sara Neufeld,SUN STAFF

When Toby Adele Heller went for a physical exam July 26, 2002, the doctor found blood in her stool and recommended that a specialist evaluate her for, among other things, a tumor.

Toby was profoundly retarded and could not speak for herself, so it was up to Baltimore-based Autumn Homes - paid $127,672 a year by the state to care for her in a group home - to follow through on the recommendation. They never did.

Over the next 11 months, Toby would often lash out in apparent pain: screaming, pushing people, banging her head, according to records and interviews. By the time she entered St. Agnes Hospital in June 2003, the cancer was taking up half her colon.

On July 18, 2003, Toby died. She was 46.

Her parents did not learn of the physician's recommendation that she see a gastroenterologist until January, when they were told by a reporter. Florence Heller said they were in "disbelief that she was treated like that."

"Who would have believed that this would happen in a licensed group home?" she said.

Although Autumn Homes officials declined to be interviewed, their attorney said in a letter to The Sun that the company "categorically denies it caused Ms. Heller's premature and unfortunate death."

License revoked

Toby's death accelerated state action against Autumn Homes. Finding other residents in jeopardy, officials banned admissions last fall to the for-profit company's 14 group homes in the region. On July 22, they ordered the company to shut down, a step they have taken just six other times since 1997 in a system with 180 providers.

State officials say that what happened to Toby, though inexcusable, is rare in a system with safeguards to protect people who are exceptionally difficult to serve.

Nevertheless, state Health Secretary Nelson J. Sabatini said the day after the license revocation, "I wish we would have been more aggressive in taking the action we took yesterday sooner."

Toby's case exposes holes in the state system of care for 5,000 developmentally disabled people living in licensed facilities.

Employee turnover is high - 42 percent a year among aides - and wages are low. Even with recent state-imposed increases, caregivers on average make less than $10 an hour. Quality of care varies with their skills and compassion. And regulators rely heavily on the facilities and families of residents to report problems.

But with nearly 7,000 people on a waiting list for residential services, relatives are often afraid to complain, fearing that their loved ones would have nowhere else to go.

Still, Toby's family had every reason to expect that she was getting good care: The state was paying top dollar for her to receive services and around-the-clock staffing, and backing it up with a regulatory system.

Because her needs were so complicated, Autumn Homes received more money to care for Toby than for any of its other 32 clients in 2003, when the state paid the company $2.6 million.

Yet police and state records and other evidence suggest that, in the final year of Toby's life, she was physically abused and her needs were neglected:

Howard County police were called to Toby's Ellicott City group home in July 2002 after a nurse found her with a black eye for the third time in two months.

In August 2002, state inspectors found one of the housemates asleep on the floor while a caregiver slept in her bed. Two months later, the mother of the third housemate wrote to the state detailing shortcomings at the home, including a lack of necessities such as food and toothpaste.

In early 2003, state inspectors found that 10 of 22 Autumn Homes residents whose records they reviewed had not received recommended health care. Toby was one.

Autumn Homes has disputed many of the inspectors' findings.

Florence and George Heller, ages 76 and 79, agreed to help The Sun tell their daughter's story, providing access to medical records and other confidential documents, in the hope of protecting others.

Visits to the park

It is the fall of 1966, and the Heller family is on its weekly outing to Druid Hill Park. George, a Census Bureau statistician, snaps a picture of his wife and three little girls as they gaze into an animal cage.

The Hellers would save that picture as a memory of the healthiest days of Toby's life.

At the time it was taken, Florence and George had already spent years coming to terms with the fact that their brown-haired, brown-eyed first-born - whose delivery on June 3, 1957, was complicated by excessive bleeding - was mentally retarded. Before she was a day old, Toby turned blue because of insufficiently oxygenated blood and lost consciousness.

Late in 1960, the Hellers found a place for Toby at Angel's Haven, a home for disabled children in Glen Burnie, about 30 miles from their own home in Silver Spring. Every week, they would pick her up for an outing.

Baltimore Sun Articles
Please note the green-lined linked article text has been applied commercially without any involvement from our newsroom editors, reporters or any other editorial staff.