IF AMERICANS remember Willowbrook -- and all other large, state-run institutions for the retarded -- we recall the scandals, the ill-clothed, urine-soaked patients shackled to bedposts or lying on the floor. We have remarkably little interest in the day-to-day ingredients which provoke the crises; the low salaries for employes, the staff cutbacks, the reluctance of legislatures to pay for alternatives.
This remarkable book illustrates another little-seen chapter in the saga of America's care of its dependent. It is the story of what happened after the television klieg lights faded in 1972 and the legal tussles began, when the state of New York had to make good on its court-ordered promise to find homes in the community for the 5,400 disabled residents living at its Willowbrook State School on Staten Island.
The Rothmans, both historians at Columbia University who write extensively on social policy (David Rothman has authored two excellent books on the history of asylums in America), have provided a valuable service by making gripping reading out of an exhaustive cycle of meetings and agreements between disability specialists, social services bureaucrats and lawyers. As in other states, it was public-interest law groups, in this case the New York Civil Liberties Union and the Mental Health Law Project, which moved Willowbrook past the recurring expos,es it had weathered into the courts where real improvements were made.
At its base, this is a story of a review panel, seven citizens who were empowered by the court to make sure the residents were put in decent homes and not dumped into smaller versions of Willowbrook or into indifferent boarding homes, both situations which have occurred with depressing regularity in other states compelled to empty large institutions.
In comparison to other jurisdictions, this panel was powerful, as it reported directly to the judge who originally ordered the sweeping improvements in the residents' lives in 1975. In the District of Columbia, for example, the citizen panel that is monitoring the court-ordered removal of mentally-ill patients from St. Elizabeths Hospital reports only to the patients' attorneys. Its only weapon is persuasion.
The Willowbrook panel, on the other hand, could seek contempt charges directly. That extra edge gave it some leverage over a recalcitrant staff at Willowbrook and a state bureaucracy that wanted cheaper alternatives than homes with a 10-to-15 bed limit as the panel and consent decree demanded.
The saga shows, to no one's surprise, that there are no easy answers. The legal processes in acquiring a community home, overcoming neighborhood resistence and finding private contractors to offer the disabled residents the needed services were often months and years in the making for each house.
But the effort succeeded, due chiefly to the fact that the review panel and several dedicated public servants in the Department of Mental Retardation spent five years of their lives to find foster parents and community homes for these retarded youths who had been denied a clean environment, sensory stimulation and safety from harm for so long. Most of the credit goes to a special unit formed within the bureaucracy, the Metropolitan Placement Unit, and a state employe named Barbara Blum, the mother of a handicapped son, who relied on churches and nonprofit community groups to find and run the new group homes.
The MPU, its hard-working staff and the insistence of the panel that the money that supported the residents in Willowbrook follow them to their new homes were the "secret" of the success in emptying Willowbrook. It is now a state institution serving 250 persons, all residents of Staten Island. It is a success story of how a lawsuit can change inhuman conditions. B
UT IN THE LAST MONTHS of the exodus, a new
administration in the state social services took office and the legislature finally was able to abolish
the hated review panel by eliminating its money.
By this time, public interest had waned in the Willowbrook case. Also, judges throughout the country were rejecting their short-lived roles as institutional reformers and no longer felt comfortable telling state officials how to run their prisons, mental institutions and the like.
A special master replaced the panel, but the damage was done. With the consent of both sides, the original court decree was modified to accept 50-bed units. As a result, the remaining several hundred Willowbrook residents were placed in much larger facilities.
Surprisingly, the Rothmans do not make a judgment about whether the care of the residents is better now. They include first-person reports on days and evenings spent in some of these new, smaller group homes and none of their sample show any of the horrors produced at Willowbrook, where visitors found the heavily-tranquilized patients had their names written on their legs with indelible ink and where one barefoot 17-year-old girl, kept in seclusion for seven years, had had her teeth extracted because she bit someone.
But the Rothmans point out that scientific control groups are not possible for this population, and therefore, they cannot as research scientists point to the groups homes as inherently better.
But this conclusion is undercut by their own actions, as they admit that their long years of attendance at panel meetings and historical knowledge about the consent decree and every facet of the Willowbrook case made them experts who were in demand by community groups interested in setting up group homes. "Accordingly, we would occasionally be asked to attend a meeting to advise on how to open group homes or change a monitoring procedure, and we complied with such requests," they wrote. B
BY THESE actions, the authors definitely crossed the line from observer to participant, which raises troubling questions about the neutrality of the book. Their defense? "People who had spent hours making sure we understood one or another facet of implementation were entitled to something in return." They note that the friends of the consent decree made more of an effort to help them with this project than its foes and added that their access to the state office on mental retardation was reduced in 1981.
But although their conduct was not proper for journalists, it is understandable why they felt more sympathy for the forces trying to aid the residents, rather than the parts of the bureaucracy who were worried about money as wl as the individuals in their care.
Because their participation was stated openly and their accounts of the field visits and panel meetings contain such balance, the net effect is not a diatribe against the state, but an appreciation for the results of different motives.
But as a coda to their findings, the Rothmans chide the state for not having learned its lesson from the expensive Willowbrook litigation and aftermath. A large facility on New York's Welfare Island was closed by the review panel as grossly inadequate for Willowbrook residents, only to be reopened recently as a men's shelter.
"We are unwilling to learn that herding the dependent into such places will inevitably generate yet another scandal," they wrote. "We seem even less prepared to grapple with the fact that crowding such a population into one area is to guarantee substandard conditions and neighborhood opposition.
"Three homeless men can evoke a sympathetic response. Four hundred will only produce fear and disgust."
The Rothmans show us that the road to institutional change in a democracy is paved with delay, compromise and inertia. The heroes are the handful of caring individuals who gave years of their lives to fight for homes, rather than institutions, for society's most vulnerable population.
Other states grappling with deinstitutionalization should read this story in the slim hope that some of the clashes can be avoided. At the very least, The Willowbrook Wars should be an epitaph to the existence of large, impersonal state institutions, the human warehouses so aptly described by Jim Clements, the chairman of the review panel, as "places where children were sent to die, except they didn't."