Based in part on an interview with Judith Gran, Thomas Gilhool and James Conroy in Philadelphia on December 8, 2006, conducted by Bruce Kappel.
There are many dimensions to the story of the class action suit and subsequent closure of Pennhurst State Hospital and School. Among the threads that made such a difference for the residents of Pennhurst, and by example people with disabilities around the world, were a determined reporter who not only reported the facts but compelled political action, a Lieutenant Governor who became a federal judge and could not turn his back on the abuse he saw, some state employees who set out to demonstrate what was actually possible in the community for people with very challenging needs, a researcher who documented the differences, a group of families and ARC leaders who saw the need to move beyond politeness and go to court, and, of course, Gunnar Dybwad.
A Reporter and the Lieutenant Governor
One beginning of the story is with Raymond J. Broderick. He was Lieutenant Governor of the Commonwealth of Pennsylvania in the late 1960s. The story he told James Conroy was that during those years he got repeated calls from a reporter who insisted that Broderick had to visit Pennhurst State Hospital and School in the countryside outside of Philadelphia. It is quite likely that the reporter was David Baldini, a reporter from WCAU-TV in Philadelphia. In 1968, Baldini developed a five-part documentary about Pennhurst which exposed its abuses and inadequacies.
The reporter kept calling and calling, but Broderick just didn't have time for him. Eventually, the reported showed up at Broderick's home and told him he had to come with him. They drove to Pennhurst. Broderick told Conroy that at that point he knew he had to do something. In fact, as Lieutenant Governor there was not a lot he could do. He did manage to divert some funds to the development of community services in Pennsylvania. Five years later, he was strategically placed to make a much bigger difference. He was a federal judge in the 3rd Circuit. The case before him was Haldeman v Pennhurst.
The diversion of funds to the community, however, was quite important for the court case. In 1969 the Pennsylvania Legislature had dedicated $25 million to improving Pennhurst. That was in the aftermath of Baldini's "Suffer the Children" series. The Pennsylvania ARC had done an investigation of Pennhurst in 1967-68. Pennsylvania ARC went to Broderick and argued that funds should be dedicated to developing community living arrangements.
A Critically Important Demonstration
In April 1972, the Pennsylvania General Assembly allocated funds to the PA Office of Mental retardation to embark on deinstitutionalization and the prevention of deinstitutionalization. Mel Knowlton had come from Nebraska and worked for the Office of Mental Retardation. He and his colleagues oversaw the development of community living arrangements. Between 1972 and 1977, about 2,000 people moved into community living arrangements. Normalization was a cornerstone of state policy. By 1976-77 state policy limited the size of community living arrangements to three or fewer and began to phase out the six-to-eight bed homes developed earlier.
The community living arrangements that were developed allowed James Conroy from Temple University to undertake what came to be called "the twins study". Conroy matched people in the institution with their "developmental twins" in the community. His work demonstrated that everybody could be supported in the community. Those five years of experience and research related to community living arrangements proved crucial in what happened next.
Going to the Courts
Broderick's commitment to doing something about Pennhurst continued when he ran for governor in 1971. Tom Gilhool remembers that Broderick visited Pennhurst two more times during his campaign. He was defeated in that election. Shortly thereafter, President Richard Nixon appointed Raymond J. Broderick to the Federal court. And what case should come before him, but Haldeman v. Pennhurst State School and Hospital.
The court case brought Broderick's earlier experiences with Pennhurst together with critically important experience with community living arrangements as an alternative.
The court case was initiated in May 1974 by a group of residents of Pennhurst (Terri Lee Haldeman, Larry and Kenny Taylor, Robert and Theresa Sobetsky, Nancy Beth Bowman, Linda Taub, George Sorotos, Jo Suzanne Moskowitz, Robert Hight, David Preusch, Charles DiNolfi). The residents were supported by their parents, guardians, foster parents, and/or next friends. They were joined by the Pennsylvania Association for Retarded Citizens, the Parents and Family Association of Pennhurst, and the United States of America. The suit was launched on behalf of all residents of Pennhurst.
The involvement of the Pennsylvania ARC in the case had its roots in the 1967-68 investigation by PARC. Gunnar Dybwad, former Executive Director of the National ARC, had begun his long career at Brandeis University. He also spent a lot of time with the Pennsylvania ARC group1. Since 1954 and Brown v Topeka Board of Education, Dr. Dybwad thought the ARC movement should borrow a leaf from the civil rights movement playbook and turn to the courts and the law. When the leaders of Pennsylvania ARC sat down to consider their options following their investigation of Pennhurst, some came to share that opinion.
In the mid-1960s people were entering Pennhurst in their teens. A major reason for institutionalization was the lack of access to a public education and the support that provided to parents. Dr. Dybwad convinced PARC to sue for the right to education as a way to close the institution by drying up the demand. PARC v Commonwealth of Pennsylvania was the first right to education case. It led to a consent decree that Congress ultimately codified as the Education for All Handicapped Children Act of 1975. Thomas K. Gilhool of the Public Interest Law Center of Philadelphia was lead counsel in the case. He recalls that in 1970, 15,000 school aged children were going into institutions. By 1978 (the effective year of the 1975 legislation), that dropped to 1,500.
But the PARC decision to go to court did not come easily. Tom Gilhool remembers that Dennis Hagerty's photos from Pennhurst "did the final sell" to the PARC leaders. But some PARC leaders thought it untoward to sue the very state leaders upon whom individuals and families would depend for services. Some leaders, including a former president of the National ARC, resigned from PARC when it decided to sue. The debate was strong and bitter.
That hard won decision by the leaders of PARC was one of a number of critical decisions that led groups everywhere to use the courts. In rapid succession, court decisions in the late 1970s set a course for the future. The Pennhurst decision came in 1977. The preliminary injunction in Michigan ARC v Smith was filed in 1978. In late 1978, Connecticut ARC files a complaints against the Mansfield Training School.
Ironically, a 1976 study of institutions by Butterfield published by the President's Committee rated Pennsylvania, Illinois, Michigan and Connecticut as the top four in terms of quality of residential care in institutions. Prophetically, Butterfield concluded "if Illinois, Connecticut, Michigan or Pennsylvania are not providing excellent residential care, then none of our states are."
Resistance within ARC and by Parents
The resistance within the ARC movement to untoward and too highly personal attacks through the courts was one obstacle in the Pennhurst process. The other was the resistance of some of the parents who had institutionalized their children. The efforts that began in Pennsylvania gave rise to a national organization – The Voice of the Retarded – dedicated to keeping institutions open. VOR had 160 affiliated groups in 2005. Polly Spare, a former President of VOR, had two children at Pennhurst.
Judith Gran, Public Interest Law Center of Philadelphia, has been involved in numerous court cases on institutional closures. In case after case, she notices two groups of parents who institutionalize their children. One group is typically upper middle class with Puritan ethics that emphasize one's chosen-ness and perfectibility. Parents focus on a cure for their children's disabilities. They marshal their resources in search of the cure. When that fails, they institutionalize their children. They are angry and bitter, often feeling hopeless and reject their child. The other group includes typically working class families, often from minority communities, who do everything they can to keep their children at home. It is only when there are no services to support their decision that they reluctantly institutionalize their children. Especially in the days when there was no right to education, mothers and fathers would wear out and often breakdown.
Judith Gran met a family in Tennessee that exemplifies the second group of families. A man had died in the Arlington Developmental Center outside of Memphis. He had a massive infection and his mistreatment led to gangrene and his death. He came from a very poor rural Tennessee family. They did not want their son to go to Arlington. When he was institutionalized, staff had to practically rip him away from the family.
The Fialkowski's Set the Example
The Fialkowski family in Pennsylvania typifies the kinds of efforts such families take to change the pattern of institutionalization in the United States. Leona and Marion Fialkowski had 11 children. In the words of Leona:
Of those eleven, two (Walter and David) were born severely and profoundly impaired. When Walter and David were growing up, severely handicapped children were excluded form public schooling, and community services were nonexistent. In fact, these children were considered to be uneducable and prevailing wisdom suggested that the rational treatment was institutionalization. Marion and I could not find it in our hearts to give up hope on any one of our children. (A Letter written by Leona Fialkowski "From My Heart")
For thirty years, not giving up hope meant changing the world to better accommodate Walter and David.
Time Line: The Contributions of Leona and Marion Fialkowski
And in the End, It's All about Learning to Use the Phone
Tom Gilhool remembers that Judge Broderick always had pictures from Pennhurst on his office walls. He thinks they were Martha Perske drawings. Gilhool also remembers that Broderick told one story with joy and pride. After people left Pennhurst, Broderick answered a late night phone call. There was silence on the other end, then a halting voice asked "Judge Broderick?" Broderick said "yes". The voice said, "I left Pennhurst. I've learned to use the phone. I wanted my first call to be to you to say thank you."