By Chris Lane
By Jeff Balke
By Aaron Reiss
By Angelica Leicht
By Dianna Wray
By Aaron Reiss
By Camilo Smith
By Craig Malisow
For years far too many people were kept in state mental institutions who had no reason to be there. But in the movement to push everyone into the community, some tragedies have occurred.
In Washington, D.C., a recent series by Washington Post staff writer Katherine Boo showed that with the closure of the notorious asylum Forest Haven, many of its former residents were preyed upon when they tried to live in group homes. The courts documented more than 350 incidents of abuse, neglect, molestation or stealing in group homes and day programs in the 1990s. According to the Washington Post articles, some of the retarded worked for the city for wages as low as 50 cents a week. Their day programs profited by this through private contracts for sending the residents to do the work. Some had no day treatment at all. For others the "treatment program" consisted of hours of shoveling horse manure at the program operator's stables.
In another forced ousting of residents, more than 2,000 mentally retarded people were to be removed from California state institutions in five years. The state hurried up and accomplished this two years early, says Tammy Hopp, executive director of Voice of the Retarded (VOR), a nonprofit advocacy group working for the mentally retarded. "The community-based provider network was not equipped to meet the higher needs," she says, and as a result, mortality rates shot up for these people.
In a 1997 report suppressed from the public until the next year, the California Department of Social Services reviewed 20 deaths and concluded that 16 were "preventable or questionable." Among the case studies was a retarded quadriplegic woman who was moved to a community care home supposedly because she wanted to be, according to her files. Her IQ was only six. Nine days after the move she died, the San Francisco Chronicle reported.
In a study by Robert Shavelie and David Strauss of the University of California at Riverside, printed in the American Journal on Mental Retardation, it was noted that of the 1,878 clients moved between April 1993 and December 1995: "There were 36 deaths, an 88-percent increase in risk-adjusted mortality over that expected in institutions."
Mike Bright, executive director of ARC of Texas, an advocacy group for the mentally retarded based in Austin, acknowledges the California and Washington, D.C., situations but speaks calmly and confidently when he says such things would not happen in Texas.
"I would just say that every state has a different kind of service system. In Texas we have a very strong set of rules and regulations in place," Bright says.
His group, numbering 3,700 members in Texas and 110,000 nationwide, advocates "that people should be served in their community so that everyone has the opportunity to live at home."
And that does mean everyone to ARC. "Even people with the most severe levels of retardation can live effectively in community-based environments," Bright says. And, "There is no one whose level of disability mandates they they live in a congregate or institutional environment." ARC has thousands of people still on waiting lists for placement in group homes, he says, and is asking the Legislature for more money to do that.
Opponents of ARC refer to these kinds of statements as "doctrinaire." They charge that ARC wants to remove their choice to decide what is best for their mentally retarded loved ones in favor of a one-size-fits-all package that simply does not exist.
Hopp says her group steers a more middle course than ARC and supports state institutions for certain people. Increasingly VOR's membership, which originally was composed of parents, now counts physicians and care providers, people concerned that some bad decisions are being made about the more severely mentally retarded.
Gladys Conner, an independent lobbyist on behalf of the mentally retarded, who is guardian of her daughter and two other residents at Richmond, sees rather clear-cut battle lines. "ARC and Advocacy Inc. want the state schools closed so they can have the money."
"We want choice," Conner says. Her "kids" include Jimmy, a thalidomide baby abandoned at birth in Houston, who is now 30. Larry was abandoned at 14. He has spina bifida. "He lives on a gurney with his face down.
"Jimmy had been in a group home in Beaumont. They couldn't keep him busy. Jimmy got tired of it. He started cursing everybody out."
As much as she loves her daughter, Conner says it doesn't work to have her at home. "Right now if I brought Linda home she would drag me from room to room. She's knocked me down twice. She's just dragged me all over the place. I can't handle her. She's 40. She's smaller but stronger than I am."
It was on her 24th birthday that Louise Abt took her four-year-old only child to Denton State School and walked away. It had gotten impossible at home. Walt kept pounding his head on the floor over and over and over. She couldn't get him to stop and didn't really know what to do with any baby, let alone this one, who had multiple physical handicaps and was mentally retarded to boot. Abt was supposed to have been a musician. She'd studied piano for years and had gone to college when she was only 16, but she'd married, dropped out, and now this had happened, and her husband couldn't deal with it. She had tried her best and was out of options. There weren't very many back then.