By Petula Dvorak
Washington Post Staff Writer
Wednesday, October 22, 2008
"Mr. Johnson" badly burned himself while trying to cook. There were roaches on him when he showed up for medical appointments. He had difficulty using the toilet and rarely took his medication.
But for years, the 65-year-old was deemed ineligible for help by the District agency that cares for mentally and physically disabled residents. For bureaucratic reasons, he officially did not exist.
In February, the District finally approved funding for him.
It was for his burial.
That detail made the District's acting attorney general, Peter Nickles, call it "a sad story, the ultimate sad story," and a case that "fell through the cracks." City officials yesterday acknowledged mishandling the case and vowed to investigate.
Mr. Johnson, the pseudonym used by lawyers who took up the man's case in recent years, was hit by a bus when he was a toddler, in the 1940s. Doctors concluded that he was left mentally disabled, and for decades he remained at home under his mother's care.
When the mother died 15 years ago, the man's well-being fell to a volunteer who cleaned, shopped and tried to arrange medical care from the city's agency for the mentally disabled. But the volunteer's efforts could not keep the man from living in squalor, hurting himself, skipping his medication and ultimately dying in a diabetic coma.
Mr. Johnson was caught in a bureaucratic loop. Because his childhood care was provided by his mother, he was not part of the government system and therefore was denied services as an adult, according to a report released by University Legal Services last week.
Instead of getting the services the man needed and qualified for, "he was rejected," Mayor Adrian M. Fenty said at a news conference he called yesterday in response to The Washington Post's questions about the case. "The Department of Disabilities Services, upon review of the records, mishandled the case on two occasions."
The legal advocacy group said it wrote the report to shine a light on a bureaucracy's fatal focus on paperwork protocol that kept a person in need from getting help.
"We have other clients like him who have been waiting around for services, and they are denied services simply because they don't have the right records, usually documents from D.C. public schools," said Mary Nell Clark, managing attorney for University Legal Services.
The group represents abuse victims in a 30-year-old lawsuit against the District over quality of care in group homes for the mentally and physically disabled.
Mr. Johnson's case began with the help of James Burrell, 78, a retiree who worked in an AARP outreach program. In 1989, the former Department of Defense worker volunteered with AARP and was assigned to help the man and his mother with paperwork and bills.
When the man's mother died in 1993, it was clear that the government would have to step in because the man had no other relatives. Burrell made some calls and kept helping the man while awaiting answers, he said.
Paying bills turned into doing laundry, buying groceries, scheduling medical appointments and cleaning the house of a man who functioned as a small child, Burrell said.
Burrell was aging, too, and was having difficulty caring for the man. He called multiple government agencies but had a terrible time getting anyone to see the need.
"I know the District has rules and regulations, but this was too much red tape just to get some help," he said. Burrell applied for help through the disabilities agency, but services were denied repeatedly.
According to the University Legal Services report, "In a letter dated May 2002, DDA's acting intake chief informed Mr. Johnson that his application for services was denied because of a lack of pre-18 diagnostic information."
Because childhood medical records are a standard part of most clients' information packages, the Developmental Disabilities Administration kept asking for more documentation instead of moving forward with the man's case, Clark said.
"The man had an IQ of 45. What other documentation do you need to get him some help?" she said.
Fenty said it was a case of agency workers spending "a lot of time making sure the t's are crossed, i's are dotted."
Burrell helped the man for four more years before he got anyone else to take action. He fumigated the apartment and collected the old televisions that Johnson loved to tinker with. He lined up a weekly grocery donation from a food bank.
In January 2006, the nonprofit Family and Child Services agency in Washington assigned the disabled man a social worker. The worker was able to get a report from a doctor saying that Johnson was "not able to take care of himself and that 24-hour supervision in a residential facility was needed."
Still, no help came. Even after 2007, when the man received a neuropsychological report that should have proved his mental disability, the department denied assistance and "requested an MRI of Mr. Johnson's brain to determine a diagnosis of pre-18 mental retardation," according to the report.
Late last year, attorney Myrna Fawcett volunteered to become the man's legal guardian. Fawcett finally got the District to rule Nov. 6 that the man was eligible for services. Even then, officials did not schedule a meeting to determine what the man needed until January, one month before he collapsed in his apartment and later died.
"After we had the meeting to determine him eligible, they kept saying they would help, they would help," said Fawcett, who was trying to secure an appointment during the holiday season. "Then he died."
Nickles said he is preparing a report to examine what went wrong in Mr. Johnson's case and how the regulations should be changed. "We sit on our butts, requiring a strict burden of proof," rather than providing help, Nickles said.
There are 214 people waiting for services from the agency, and 55 of them, like Mr. Johnson, lack the pre-18 documentation. Nickles said that such cases will be given expedited reviews.
Fenty said he plans policy changes and possible disciplinary action once Mr. Johnson's case is investigated.
D.C. Council member Tommy Wells (D-Ward 6) will hold a hearing to examine the case.
"We knew," Wells said. "We knew he was in trouble, and the ball was dropped."