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  Residents Languish; Profiteers Flourish

INVISIBLE LIVES
Forest Haven
Milton the cat helps stimulate Eileen, a retarded resident at a home operated by Community of the Ark, acknowledged as one of the Districtís best. (Michael Williamson – The Washington Post)
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D.C.'s Troubled System
For the Retarded

Sunday:
Forest Haven Is Gone, But the Agony Remains
Olympic Achievements Out of Reach
An Elaborate Structure of Care
Hundreds of Abuses, No Fines

Monday:
Residents Languish; Profiteers Flourish
Nonprofits Struggle in Current of Greed
Death Among the Mentally Retarded
Second of two articles

By Katherine Boo
Washington Post Staff Writer
Monday, March 15, 1999; Page A1

Frederick Brandenberg carried a Bible and lisped through ill-fitting false teeth. He loved country ballads and, unfortunately, sang them -- his voice could knock starlings from the sky. His life at a Wisconsin Avenue NW group home passed about as normally as life passes for a retarded person in the care of the D.C. government. Until one winter morning.

"Alert, smiling," noted his doctor in the last week of Brandenberg's life, declaring the 57-year-old free of a cold. "Active and talkative," reported a health inspector who happened, the same week, to be doing an annual inspection at the home -- one of 14 facilities for the mentally retarded run by a for-profit company called D.C. Family Services. But the inspector was jarred on the second day of her visit. Brandenberg was in the throes of what she termed "a major change": lethargy so pronounced that she suspected he'd been drugged. The guy with opinions on everything -- why University of Virginia football mattered, why old black-and-white movies are better than candy-colored new ones -- could this January 1997 morning barely rise from his bed.

When the inspector inquired, a group home staff member said that Brandenberg had been sedated with Ativan, a potent tranquilizer, to calm him down for a morning appointment at George Washington University Hospital -- an appointment, the staff member said, the clinic had suddenly canceled. Health inspectors later learned that the group home itself had canceled the appointment. Brandenberg remained so heavily sedated at dinner time that it took two staff members to hold him up to sip a Coke.

The next day, still lethargic, Brandenberg started sweating, breathing slowly, according to a subsequent D.C. Health Department report obtained by The Post. No one called a doctor. No one recorded his vital signs. And the following morning -- 48 hours after being drugged, and without recovering from the sedation -- Fred Brandenberg was dead in his bed.

A decade ago, when retarded people died in the District's asylum called Forest Haven, in Laurel, they were removed to shallow graves in an unmarked field, from which the overflow of a nearby creek would sometimes disinter them. But in 1991, with the aid of a federal lawsuit and the U.S. Department of Justice, Brandenberg and his peers were rescued from the place that had become national shorthand for the inhumanity of large institutions for the mentally disabled. They were requited for their suffering by what was designed to be one of America's most compassionate social policy reforms. Forest Haven shuttered, they were brought home to the District and the presumptive safety of their community's watchful eye.

Today, the District's mentally retarded population is among the most deinstitutionalized in the country. More than 1,000 people under city care are scattered among 150 homelike facilities run by private contractors in neighborhoods from Chevy Chase to Congress Heights. The services the retarded receive -- in their group homes, and in therapy, skills training or work programs they attend daily outside the home -- cost as much, per person, per year, as four years at Harvard.

A decade into reform, however, a Washington Post investigation has found that the ideal of compassionate care and municipal accountability has yielded to a reality of profiteering and fraud, facilitated by city agencies that have for years demanded little accountability and little human decency in return for a vast outlay of public money. For corporate wrongdoers, the consequences for cruelty and neglect have been negligible. For the city's retarded men and women -- men and women who are politically, and sometimes literally, voiceless -- the consequences have been swift, direct and sometimes fatal.

A review of tens of thousands of documents from four city agencies and the federal courts revealed more than 350 incidents of abuse, neglect and robbery of retarded residents in the '90s. A sampling: A man tied up after "making noises" and "asking for cookies." Clients so drugged by their caretakers they kept falling down. A woman starving because her for-profit group home wouldn't buy her what a doctor and a nutritionist were begging for -- a few cans a day of a liquid supplement called Ensure. Yet none of these and other documented reports of abuse led to fines or criminal penalties against the offending group home operators.

The group home and day program operators treated with such lenience included a convicted embezzler and a D.C. nightclub owner on his way to prison. A high-level city official responsible for monitoring the quality of day programs bought a private home for a contractor he was overseeing -- a popular treatment provider who, court records allege, billed Medicaid for thousands of treatments she didn't actually deliver to the retarded in her care.

And then there are the dead. Fifty-three group home residents have died in the last three years. When retarded people died at Forest Haven during its final years, the Justice Department rushed in to investigate whether poor treatment had contributed. But of the 53 recent deaths, only three have received even cursory inquiry from the city or federal government.

Frances Bowie, administrator of the Department of Human Services agency that serves as custodian of the District's retarded wards, says the deaths are a demographic inevitability: The average group home resident is over 40, with "a lot of medical problems." But her agency refused to release the names or ages of the dead, or even summary information about how and where they died, citing privacy concerns. The Washington Post identified Brandenberg only after dozens of inquiries within the community where he died.

Operating without public scrutiny, city officials have routinely closed death cases with no more than a brief account written by an employee of the group home or day program -- the entities that might be liable if poor treatment were found to have contributed. A paid representative of D.C. Family Services Inc. probably would have written the story of the death of Fred Brandenberg, too, except for happenstance: A health inspector had witnessed the prolonged sedation that preceded his death.

The Health Department's conclusions about Brandenberg's death were dark. It found that the group home staff had not only lied about one missed medical appointment, but also had withheld previous key medical treatment. Although Brandenberg had a history of heart disease, the home had failed to carry out orders by his cardiologist to increase his heart medicine and to obtain lab tests to ensure that the treatment was working.

The report didn't note a fact contained in health inspectors' own files and in the files of D.C. Medicaid monitors assigned to safeguard the federal funds spent for care of the city's sickest retarded people: In the previous two years, poor medical care had been found repeatedly in homes that D.C. Family Services runs across the city. Just three weeks before Brandenberg's death, for instance, health inspectors cited a D.C. Family Services home for delaying medical treatment to a profoundly retarded man who had received two head injuries over the course of a few days -- and who had been physically restrained by what health inspectors called "hostile staff."

Sheila Gaither, co-owner of the company, declined to comment on Brandenberg's case. Her partner, Capitol Hill dentist Arthur Stubbs, did not return repeated phone calls.

Last year, D.C. Family Services received $6.3 million in public funds to run its group homes, records say. And last November -- about the time that health inspectors cited another case of medical neglect at Brandenberg's old home -- the Department of Human Services awarded $6.6 million to another company run by Gaither and Stubbs, this one to help welfare recipients get jobs.

Fred Brandenberg didn't even get the autopsy that, records say, his doctor requested from the city. The D.C. medical examiner didn't perform one. "If we had known the full circumstances, there probably would have been an autopsy," said Jacqueline Lee, the deputy chief medical examiner.

Health inspectors didn't refer their findings to the U.S. attorney or anyone else; they say they haven't referred a group home death to higher authorities in five years. The death certificate read: heart disease. The case was filed away. After a life of not quite being there, Fred Brandenberg was gone altogether. And the Department of Human Services assigned another retarded person to his bed.

City officials, responding to The Post's findings, acknowledged systemic failures that have hurt the well-being of the retarded after the closing of Forest Haven: poor monitoring they attributed in part to budget cuts, miscommunication among agencies and a failure to implement regulations that would allow companies that mistreat the retarded to be fined.

On documents turned over to The Washington Post under the Freedom of Information Act, city officials -- citing the privacy of the retarded -- expunged the name of Fred Brandenberg and thousands of his peers with heavy swaths of black ink. The symbolism sears. This is a story of lives and deaths that, even in the midst of communities, remain invisible.

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