California foes of community living fight de-institutionalization
KEEP 'EM IN
By Josie Byzek
The headlines are startling:
Fourteen pages of news clips documenting accidents and mishaps at group homes around the nation.
These form the centerpiece of a report put out by the California Association of State Hospital Parent Councils for the Retarded (CASH/PCR). This report, and a study by University of California statistician David Strauss, are the big cannons in the war to stop the exodus of Californians labeled with severe mental retardation from institutions to the community.
Besides CASH/PCR, and the usual unions representing institution workers such as the California Association of Psychiatric Technicians, the institutions have the backing of the California Medical Association, the California ARC, the San Francisco Chronicle -- which ran an anti-community series of articles last winter -- and Senator Diane Feinstein, usually noted as a liberal supporter of civil rights.
They want a two-year moratorium on all moves out of the institutions, called Developmental Centers.
Feinstein "was against the transfer of developmentally disabled out of care. They were being kicked out into the streets. She expressed her outrage," said a staffer for Senator Feinstein in her Washington, DC office. Even though no one has been able to cite a single example of someone actually being 'kicked out" of California's Developmental Centers "onto the streets," Sen. Feinstein's reaction is typical.
California has had the fastest deinstitutionalization of any state so far -- 2,300 people since 1994. This exodus was the result of what is called the "Coffelt Lawsuit," brought by parents of people living in the Developmental Centers, who charged that over 2,000 people in these centers wanted community services instead. When the parents won the suit, the exodus began.
The Strauss report was published in July 1996. Dr. David Strauss, a statistician for the University of California, Riverside, found that people with developmental disabilities had a 72 percent higher chance of dying in the community than in an institution. The report was funded primarily by the federal government; some money came from what Strauss calls "allied groups" -- the California Association of Psychiatric Technicians is named as the primary union underwriter.
Fear of people with mental retardation living on the streets, coupled with the Strauss report, has stirred up worries of a repeat botched deinstitutionalization process like the one California experienced under Gov. Ronald Reagan when thousands of psychiatric survivors were freed from institutions without adequate funding or community supports and many became homeless.
Repercussions from what's currently happening in California have been felt across the nation from Tennessee to Pennsylvania. The Strauss report is being touted by such pro-institution groups as Voice of the Retarded (VOR), a parent organization, as definitive proof that people with mental retardation are much better locked up than loose in the community.
Had there been no Strauss report, most likely there'd be no move for a California moratorium on people with disabilities moving out of institutions into the community. Senator Feinstein would not so firmly believe that lives are at stake, or that people with mental retardation are being forced out onto the streets. The San Francisco Chronicle's series on community versus institution wouldn't have had the same bite -- it probably wouldn't have even been written.
But the report, coupled with the anecdotal evidence of community placement gone wrong, has brought the exodus from California institutions to a virtual halt, even without a formal moratorium on moves into the community.
"There is no credible evidence of a mortality crisis among those who are placed in community care settings," writes Dr. Jane Mercer in her report, "Statistics Should Not Undermine Freedoms for Development-ally Disabled Californians." Mercer, a sociologist, is also from the University of California at Riverside. Her report, compiled in the wake of the Strauss report, was released last July, a year after the Strauss report. "The statistics on death rates are incomplete and certainly misunderstood," it says. Mercer's report received no press at all, in stark contrast to the Strauss report.
Mercer's report outlines the history of California's most recent move from institutions: that in the 1980s, a group of parents grew tired of waiting for the state to create placements for their children with developmental disabilities in the community and sued the state of California. This resulted in the 1993 Coffelt settlement, in which the California Department of Developmental Services agreed to move at least 2,000 people with developmental disabilities from state developmental centers into the community in five years. California lived up to its agreement -- which sparked the backlash documented and supported by the Chronicle.
Mercer's report insists there's "encouraging evidence that the community placement has enriched the lives of many developmentally disabled persons." As part of the Coffelt agreement, Dr. James W. Conroy, Ph.D., an independent evaluator, has been conducting a study of the effects of community placement on those moved into the community. The Conroy study did not receive any mention in the Chronicle series either.
Conroy matched 118 "movers" with 118 "stayers" of the same age and sex and with similar levels of disability and found, not surprisingly, that the movers indeed were now able to get out more and socialize; that they had friends, went to church, attended school, went to the mall and other places people socialize.
"The great victory is that 2,300 people have gotten a shot at life outside an institution," says Conroy. "Those who can speak to us are very happy about it. Those who can't speak -- we've measured every quality of their lives: behavioral progress, physical aspects of homes, integration, employment, and so on. I've talked to thousands of people. Everybody says they're doing great, they'd never go back. So what is this commotion about? It's bizarre!"
Conroy thinks the Strauss report will be debunked. "The essence of science is replication," he says. "No one has replicated his findings, certainly not I."
The Strauss report, he said, found a 72 percent higher mortality rate in folks who moved out of institutions -- whether they lived in group homes or with mom and dad made no difference This finding seems very odd to people like Conroy. In his own research, Conroy said, "I get the total opposite." That's why, he said, "you can't just depend on one researcher. Other researchers have to find it out in other states."
He compares the Coffelt settlement with the 1978 Pennhurst case in Pennsylvania, which moved over 1100 people into the community, and which he evaluated. "I tracked all those [Pennhurst] people every year right up to today. There's no question of 'in the community' or 'institution,' because everyone went to the community. Based on past years, 15 per thousand people per year die in institutions. By 1990 182 people would have died. Instead, all those people moved into the community and only 132 people actually died."
Originally the project Strauss worked on was run by Dr. Richard Eyeman. He retired, and the project was continued by Strauss, who was advised to do a mortality investigation. "He did so," says Conroy, "but with very complicated mathematical models. After his adjustments, he claimed that the rate of death is higher in the community than in institutions."
Another researcher with the same data would get very different results, Conroy thinks. "Cold fusion was published," he points out, "and found to not be true. It was a great stir, a huge controversy, widely published, but never replicated."
Yet the Strauss report remains a powerful gun. The finger on the trigger of that gun is the Voice of the Retarded, a small but potent pro-institution group that has strong ties with unions representing institution workers. California CASH/PCR is allied with VOR.
"The attempt at reconciliation and finding common ground has failed because of bad faith with VOR and CASH/PCR," says Conroy. "They come to the table, negotiate compromises, then betray them behind your back. They've done this in Pennsylvania, Montana, Tennessee, Florida and Connecticut. They have us running scared right now, but the facts are so far in our favor, so clear. Thirty years of research, there has never been a contradictory finding."
Conroy spoke with Ed Bradley from 60 Minutes a few years ago, during filming of a story on state institutions. He says Bradley told him that as of 1995, VOR had a $1.3 million war chest. Yet the group appears to have only have 600 members nationwide. Some VOR leaders, such as Polly Spare in Pennsylvania, are open about receiving funds from unions that support workers in institutions. Some disability rights advocates have wondered whether groups such as VOR and CASH/PCR are merely fronts for the unions and not representative of parents at all.
Even with foes like VOR, pro-community family members are still confident that the battle against California's institutions will be won. "What we have done is almost completely stop new admissions to the Developmental Centers. That's a major step forward," says Bob Little, whose daughter with mental retardation lives in the community. Bob is also a member of People First, a self-advocacy group. "Parents of young children with disabilities no longer think about putting their children in Developmental Centers." The only pro-institution group, he says, are the older parents "who are afraid of what they did fifty years ago. They regret it, and they feel guilty about it. Now they have to face the fact that they made a bad decision about it."
In order for people with disabilities who move out of institutions to be full members of the community, the community must change, says Little. "How do you change the attitudes of communities so people are more welcome when they come? Some of us think we have to go out and sell this idea to the city council, the mayor; let them know there are some changes that are occurring. Things like sheltered workshops are no longer appropriate, and so on. That there needs to be access and transportation. A whole infrastructure that needs to be in place. That there's a need for ADAPT, People First and Senior groups, and they need to work together."
Maybe someone needs to tell that to the California Medical Association. They're one of the groups who passed a resolution for a moratorium.
"There's been a lot of reflection in the CMA over the resolution they passed," says Mark Polit, President of the Alameda County Developmental Disabilities Planning and Advisory Council. "They probably realized it was passed with incomplete information, only hearing one side of the story, as well as putting them in the uncomfortable position of suggesting we keep people in Developmental Centers because of lack of adequate medical care in the community. If that is true, they need to not be the cause of inadequate care."
And the resolution passed by the ARC? "A lot of people in the ARC don't even realize they have a moratorium resolution," says Polit. "It was drafted by CASH/PCR members on ARC's board and then presented to the group." He says ARC has "since issued a clarification" but that they're still "divided" over the matter.
The division exists in part because those fourteen pages of headlines about community-living-gone-bad are true stories. Of course, there are also thousands of true torture tales about life inside institutions, but it is clear that institutions do not hold a monopoly on horror stories.
"The most important things that lead to abuse are when people are isolated from their communities or other people, and when people are put in a position of lack of power; when their caretakers have lots of power over their lives, and when they're taught to obey," says Polit. "Those are the key factors that lead to abuse. Those factors exist disproportionately in institutions." But, he goes on, "There are also some group homes that are isolated, where the caretakers have a disproportionate amount of power."
Abuse can happen both in institutions and in the community. But there's one clear difference, says Polit: It is possible in the community to be free. "Moving people into our communities is about freedom. It's about civil rights. It's about access to enjoyable and stimulating things. None of us would choose to live in an institution."
The argument for or against community has been framed as being between institutions and group homes. But some advocates don't see it that way. Take institutions completely out of the picture, they say; group homes will be the next dinosaur to disappear.
"Most people don't want to live in a group home either," says Wendy Wolfe, an advisor to Bay Area People First. "Like nobody's ever heard of owning your own home, or shared housing? If you think about the possibilities, you can work with your community and create them."
Many advocates are pushing beyond the group-home model to supported living, which is very similar to the personal assistance services used by people with physical disabilities.
"The person could have an arrangement where they could live on their own," says Wolfe. "They could choose the supports they want. Maybe a neighbor, a best friend, or someone from a service provider. The Supported Living agency is more like a service broker. The consumer would get the in-home services they need. It's happening here in California. A lot of people who are coming out of the institutions are going into supported living. It's more creative."
"We're just getting a toehold on supported living," says Ellen Goldblatt, Senior Attorney for Protection and Advocacy, Inc. of California. "The idea is that people with disabilities control their homes and the service providers come and go, and the level of service goes up and down as people need it. Supported living separates housing from services; you rent your apartment, buy your home, and then get a provider. If the provider changes, you don't have to move."
"We need to get more into supported living," says Bob Little. "We must have the dollars from the institutions flow into the community, with the person. In Tennessee, people have control of their own dollars."
"Look at what happened in Oklahoma," says Conroy. "The Hisom Memorial Center closed, and no one was placed in a group home. Everyone went to supported living." They picked where they lived and picked their staff, he said. "If they couldn't, then a strong attempt was made to get unpaid circles of support including family members, neighbors, churchgoers, and so on to help make those choices. In Oklahoma, absolutely the strongest, most positive outcomes were from supported living."
If groups like CASH/PCR, VOR and unions representing the workers inside institutions get their way, thousands of Californians will never get the chance to live on the other side of the wall. The outcome of the battle in California will most likely foreshadow similar battles in other states.
Unfortunately, the message that has been sent across the nation from California is that deinstitutionalization wasn't working. But the message is wrong. It is working, and California disability rights advocates are already eyeing the next battle: getting more consumer-controlled support services, creating a system where the money follows the person, so that person can live the way she wants to live, like every other American.
Jose Byzek works as a civil rights specialist for the Pennsylvania coalition of Citizens with Disabilities and is a member of ADAPT.
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