TOM GILHOOL AND ME

When disability rights attorney extraordinaire, Tom Gilhool, passed away on August 22, 2020, the Public Interest Law Center aptly and eloquently eulogized him:

Tom helped bring about generational advances in the rights of people with disabilities nationwide, leading the first case establishing the right to public education and championing the movement for services based in the community. He was also a founding figure in civil legal aid, and he used the law throughout his life to give voice to all those who are underrepresented and ignored in public policy, advancing access to healthcare, police accountability, education, and more.

Those who knew Tom recall his creativity, passionate spirit, perseverance, driving energy, and leadership. He was a force of nature. When he found a path forward for advancing justice, he inspired others to follow and gave them the tools and knowledge to do so.[1]

It would be difficult to overemphasize the importance of Tom’s leadership, innovation, and genius in the birth and flowering of the Disability Rights Movement. He was the legal brains and crafty lawyer behind the PARC [2] case,[3] the statewide, class-action, federal court lawsuit that inspired an eruption of court cases around the country establishing the right of students with disabilities to attend public schools, thereby effectively launching what became the Disability Rights Movement in America.[4]

Forty-five years ago, in 1975, Tom assumed a leading role in Halderman v. Pennhurst State School and Hospital, a lawsuit challenging the confinement of persons with intellectual disabilities in segregated institutions, where they were suffering egregious harm and abuse. Though the case took many twists and turns during appeals and remands up and down the judicial ladder, it ultimately led to a judicially-approved consent agreement between the parties, and Pennhurst was finally closed in 1987. Along the way, the lawsuit produced a ruling by Judge Raymond Broderick that segregation at Pennhurst and failure to achieve minimally adequate standards of habilitation violated equal protection – a holding that despite the spate of subsequent proceedings and wrangling was never reversed or vacated. The Pennhurst litigation helped inspire numerous other legal actions across the nation and provided a menu of legal claims upon which such lawsuits could be based.

The Pennhurst litigation helped inspire numerous other legal actions across the nation and provided a menu of legal claims upon which such lawsuits could be based.

Upcoming postings on the Disability Rights Movement section of the ADAchronicles website will describe the origins, trajectories, and impacts of the PARC and Pennhurst cases. But as groundbreaking and influential as the two cases were, they represent only a small slice of the disability rights legal advocacy that Tom participated in and inspired. Some great primary sources, including oral history interviews with Tom,[5] provide a wealth of information about Tom’s life and rich legacy. Having had the good fortune to know him and work collaboratively with him over many years, I want to share a few of my own experiences with Tom, and bring to light some lesser-known stories and perspectives about this dynamic, one-of-a-kind, wonderful guy.

LEARNING OF THE FOUNDATIONAL PARC CASE

I first heard about the PARC lawsuit in September 1971, at a time when preliminary court proceedings in the case were pending and the parties were trying to hammer out a consent agreement to settle the case. At an initial meeting to discuss feasibility of Notre Dame University sponsoring a disability advocacy project – which gave rise to the idea of establishing a National Center on Law and the Handicapped (NCLH) – officials of the local service agency serving people with intellectual disabilities excitedly mentioned that they had learned, through Arc scuttlebutt, about a trailblazing legal action they called “the PARC case” (Pennsylvania Association for Retarded Citizens (PARC) v. Commonwealth of Pennsylvania). We hurried to obtain the initial legal papers in the case, including the complaint filed by Attorney for Plaintiffs, Thomas K. Gilhool.

MEETING TOM

My initial face-to-face encounter with Tom occurred at an early meeting of the board of directors of NCLH in South Bend. One of the members of the board was Dennis Haggerty, the parent of a child with intellectual disability – like Tom, a Philadelphia lawyer – and co-chair of the American Bar Association’s Committee on Mental Retardation and the Law. Dennis had been a key figure in PARC’s engagement of Tom to initiate the lawsuit, and, at Dennis’s suggestion, the NCLH board invited Tom to its meeting. The circumstances surrounding Tom’s arrival were unusual. The members of the board had arranged to stay at a nearby motel, and, to save money, had agreed to double up on rooms. They assigned Tom to share a room with Harvey Bender, a professor in the Notre Dame biology department and vice president of the local Arc. On the morning prior to the start of the meeting, Bender, laughing and griping at the same time, told us “That Gilhool guy is whacko. He came in in the middle of the night and used up all the towels in the room to do headstands on.” So we quickly got the idea that Tom was something out of the ordinary.

During the meeting, Tom was terrific. He was friendly, obviously highly intelligent, insightful, down-to-earth, and eager to help us get NCLH going. He was quick to smile and joke, but also was serious about the mission we were undertaking and gave us invaluable guidance. As the staff attorney who was going to handle special education cases for the National Center, I made a special effort to engage and seek advice from Tom, and he generously gave his help without any condescension toward me as a still-wet-behind-the-ears lawyer.

LESSONS FROM TOM’S LEGAL DOCUMENTS

The initial legal documents that Tom prepared in the PARC case (including the Complaint and Memorandum Supporting Motion to Convene a Three-Judge Court) and drafts of a proposed consent agreement were an education in themselves. They provided excellent models of legal theories, evidentiary showings, and arguments that should go into this kind of case. I would later write:

In mapping out his strategy for the Pennsylvania lawsuit, Thomas K. Gilhool, the plaintiffs’ attorney, provided a blueprint for future litigation of this type. The two-barreled (due process and equal protection) attack has become standard fare in subsequent lawsuits. The legal analysis and arguments contained in the Complaint in PARC have been employed as a touchstone in the drafting of later complaints. Even though there have been a number of subsequent legal developments that have necessitated adjustments and new directions in such litigation, the impact of Gilhool’s initial legal insights are difficult to overestimate.[6]

NEED FOR EDUCATING JUDGES

One piece of advice that Tom offered me was that it was essential to educate judges who were hearing equal educational opportunity cases. His view was that many judges had no familiarity with, nor realistic understanding of, the abilities of people with intellectual disabilities, cerebral palsy, and so on. And they had no awareness of the education programs and techniques available for teaching such pupils. Equal education lawsuits on behalf of students with disabilities were not going to go anywhere if judges believed that students with intellectual disabilities, for example, were incapable of learning – in the terminology of the day, were “uneducable.” In the legal documents he filed, wherever possible, Tom included information to enlighten judges that all children could benefit from appropriate education services, no matter the degree of their disabilities. In the complaint in the PARC case, for example, Tom included enlightening allegations regarding children with intellectual disabilities, that:

• Whatever the traditional label applied to them – e.g., “mildly,” “moderately,” “severely,” or “profoundly” “mentally retarded”; or “uneducable” or “untrainable” – all of them “of any intelligence quotient are capable of benefitting from education.”
• Among every 30 persons with intellectual disabilities, if education is provided to them, 29 are capable of moving toward self-sufficiency: 25 would be able to achieve sufficient skills to enter the labor market and to secure employment in competitive jobs; four to secure employment in a sheltered or supervised setting; and one to achieve some degree of self-care.
• Education is even more important to the development of the person with an intellectual disability than it is to the “normal” person, for the latter may develop skills willy-nilly and informally, but the person with intellectual disability cannot without sustained educational attention.
• Absent education, individuals with intellectual disabilities will be unable to provide for themselves and will be in jeopardy of institutionalization and loss of liberty, may be incapable of self-care and in jeopardy even of life.
• The earlier children with intellectual disabilities begin their education, the more thoroughly they will benefit from it and the greater the likelihood will be of their realizing a capacity for self-sufficiency.

 

CRUCIAL EXPERT WITNESSES

To convince the court of the accuracy of such allegations about the educability of the plaintiff class of students with intellectual disabilities, the known programs and services needed to educate them, and the egregious harm they were suffering because of Pennsylvania’s failure to provide such education, Tom and PARC officials developed a panel of national experts on education of people with disabilities to testify at trial. They prepared a list of seven distinguished authorities, including Professor Ignacy Goldberg, early scholar and advocate on special education issues; Professor Burton Blatt, an outspoken scholar, author, and disability rights activist who advocated for the elimination of residential institutions and the expansion of community living programs and supports; and Gunnar Dybwad, a legendary legal scholar, tireless activist, and senior statesman in favor of maximal integration in society of people with developmental and intellectual disabilities.

Tom was instrumental in helping connect me with these and several other potential expert witnesses for the disability rights cases my colleagues and I were working on. In a later posting on this website, I will give more details about the incredible expert witnesses who lent their expertise and prestige to litigation efforts in the early seventies.

DEVELOPING MODEL DOCUMENTS

With Tom’s capable tutelage beginning when I started working as a student intern at NCLH in the fall of 1972, I was able to make rapid progress in the embryonic legal specialty of disability rights. I knew how fortunate I was to be learning about this innovative law reform field from the master. I also had some unique opportunities to learn from the materials we compiled at the National Center in its function as a clearinghouse of disability rights advocacy materials. At one point I gathered all the complaints we had obtained from equal educational opportunity cases around the country, starting with Tom’s PARC complaint; lined them up on a long cafeteria table; went through them one-by-one to see how they compared as to the claims they asserted and how they articulated the component allegations and legal theories; and borrowed from them what I thought were the best elements, or cobbled together an improved version drawing upon the original documents, to produce what I considered a “sample right-to-education complaint.” A similar effort enabled me to disseminate what I called a “model brief” in opposition to defendants’ motions to dismiss – a procedural maneuver defendants almost always filed in such cases and the one which was commonly the venue for major battles on legal analytical issues raised in the cases. Without too much exaggeration, I bragged to a few friends that I had become an “instant expert” on right to equal educational opportunity cases; whatever degree of truth was in my boast, it derived almost totally from Tom’s guidance, example, pioneering theories, and excellent legal documents.

GILHOOL ALERTING US TO SECTION 504 BEFORE IT WAS ENACTED

One vivid memory I have involving Tom took place during a Conference on the Mentally Retarded Citizen and the Law at Ohio State University on May 4-6, 1973. The event, the first of its kind, convened a variety of scholars and activists interested in legal advocacy for people with disabilities at a time when, as the associate dean of Ohio State – the host institution – would say later, “there were only a score of lawyers with a strong focus on legal advocacy for the developmentally disabled.”[7] Tom was a featured speaker and was on stage as part of a late afternoon panel on Friday, May 4,1973. Along with other participants and attendees, I was seated in the audience for the session. A member of the conference staff came on stage, approached Tom and whispered something to him. Tom then turned to the audience and said, “Please excuse me, but I’m told I need to take an important call from Washington.” I suppose we all thought this a bit odd, but the other panelists continued their discussion until Tom returned a few minutes later. He apologized for the interruption but said he had some really exciting news from contacts within the U.S. Senate staff.

It turned out that the news Tom had received was about rehabilitation legislation pending in Congress that had previously failed. Congress had passed the Rehabilitation Act of 1972 to revise and extend the federal vocational rehabilitation program, but President Nixon pocket-vetoed it. In March of 1973, Congress passed another version of it, but Nixon vetoed it and Congress failed to override the veto. The rationale Nixon asserted for the vetoes was fiscal restraint: he described the pieces of legislation as “fiscally irresponsible, badly constructed bills” that were part of a “Congressional spending spree.” After the second veto, congressional leaders continued to meet with White House representatives to discuss possible compromises and made several concessions to lessen the legislation’s financial impact.

Part of the news that Tom received in the phone call was that the negotiations had succeeded: a revised version of the bill was accepted by both sides and was headed for enactment. But Tom’s sources also let him in on the fact that the current version still contained a final provision, designated “Section 504,” from the previously vetoed bills that had not received any fanfare or discussion.

CONTENT AND SIGNIFICANCE OF SECTION 504

Tom seemed as spellbound as the rest of us as he read aloud to us the language of the provision that he had jotted down during the call:

NONDISCRIMINATION UNDER FEDERAL GRANTS

SEC. 504. No otherwise qualified handicapped individual in the United States, as defined in section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.

Beginning to digest the legislative language from a single oral reading left many of us in the audience reeling, if not hyperventilating. Aware of the near ubiquity of federal financial assistance in the U.S., we knew that the scope of coverage of this prohibition of disability discrimination would be broad. And it would be (with only minor exceptions) the first federal law outlawing discrimination on the basis of disability. For those going to court to challenge such discrimination with only broad constitutional principles upon which to base their cases, a federal statute prohibiting discrimination against people with disabilities would be like manna from heaven.

Congress passed the compromise bill, the Rehabilitation Act of 1973, and President Nixon signed it into law on September 26, 1973, and so, without any congressional debate or commentary, Section 504 became the law of the land.[8]  Though Section 504 had some limitations and flaws, it was an historic advance in the rights of individuals with disabilities, and was widely acclaimed in the disability community, with one authority at the time calling it “the single most important civil rights provision ever enacted on behalf of disabled citizens in this country.”

As soon as the Rehabilitation Act of 1973 was signed by the President, I hastened to send a memorandum to all attorneys and organizations that were involved in or preparing equal educational opportunity lawsuits advising them to include a claim under Section 504 (or to amend their complaints to add it) – a strategy that would prove quite successful since most public education programs received federal funds. As one of those present in the hall when Tom read, in his melodious voice, the language of the about-to-be-enacted, historic provision, I will always associate the origins of Section 504 with Tom’s revelation of it at the Ohio State conference.

NCLH LAWYERS WORKSHOP

In the fall of 1973, I was in charge of organizing an NCLH workshop for lawyers involved in equal educational opportunity cases. Tom agreed to be the headline presenter at that gathering, which took place on Oct. 12-13, 1973. Twenty-five attorneys from around the country attended, and Tom and other first-rate speakers helped attendees find answers to problems and questions they were encountering in fashioning or litigating “right to education” lawsuits in their states. A key feature of the workshop was introducing the attorneys to leading experts on the education of children with disabilities, including Ignacy Goldberg who had been one of Tom’s expert witnesses in the PARC litigation.[9]  Tom and the experts advised the attorneys how to use the knowledge and expertise of the witnesses most effectively in court – information that was put to good use in their cases. The workshop was a small milestone that continued and enhanced the momentum of the educational rights litigation for people with disabilities, and, once again, Tom Gilhool was at the forefront.

COLLABORATION AND CONFLICT IN HALDERMAN V. PENNHURST CASE

In 1980, Tom and I worked together at the U.S. Supreme Court level in the Halderman v. Pennhurst State School & Hospital case, and had a legal strategy disagreement for the only time in our many collaborations. Halderman was an incredibly complex and lengthy lawsuit. In 1985, the district court judge wrote: “No one . . . anticipated that this civil action commenced on May 30, 1974, would be actively litigated for more than ten years, requiring 2,192 docket entries, about 500 Court orders, twenty-eight published opinions, and three arguments before the U.S. Supreme Court.”[10]  In 1990, the U.S. Court of Appeals for the Third Circuit called the still continuing case “seemingly endless litigation.”[11]  I will not seek to trace the convoluted course of the lawsuit in any detail here, but will just provide a brief overview.

ORIGINS OF HALDERMAN CASE: ADMINISTRATOR ASKS PARENT TO SUE HIM

Pennhurst State School and Hospital, originally known as the Eastern Pennsylvania State Institution for the Feeble-Minded and Epileptic, was a residential facility for individuals with mental and physical disabilities in southeastern Pennsylvania. By almost all accounts, it was a terrible, abusive, inhumane institution. Some officials and staff of Pennhurst were among those disturbed and appalled by the abysmal conditions and practices there. Thus, when the mother of Terri Lee Halderman complained to the assistant superintendent in charge of the facility that her daughter had been grievously abused and seriously injured (including more than 40 documented injuries and incidents) while residing at Pennhurst, he told the mother to “call David Ferleger and sue me,” which she did.

Ferleger, a Philadelphia lawyer like Tom, had, in the early 1970s, begun to make a name for himself advocating for the civil rights of persons with mental disabilities. On May 30, 1974, he filed a class action lawsuit in the U. S. District Court for the Eastern District of Pennsylvania on behalf of former and current residents of Pennhurst against the institution, its superintendents, and state officials responsible for Pennhurst’s operation. The complaint alleged that the confinement in unsanitary, inhumane, and dangerous conditions of the residents at Pennhurst violated their constitutional rights under the Eighth, Ninth, and Fourteenth Amendments, and the Pennsylvania Mental Health and Mental Retardation Act of 1966. In addition to seeking injunctive and monetary relief, the complaint urged that Pennhurst be closed and that “community living arrangements” be provided for its residents. The complaint was amended in 1975 to add claims of violations of two federal statutes – Section 504 of the Rehabilitation Act and the Developmental Disabilities Assistance and Bill of Rights Act (DDABRA) (42 U.S.C. §§ 6001 et seq.).

A short time after the original complaint was filed, the U.S. Government intervened in support of the plaintiffs, and the Pennsylvania Association for Retarded Citizens (PARC), represented by Tom and his colleagues at the Public Interest Law Center, also joined the case as plaintiff-intervenor. Tom argued to the federal district court that “there is no reason for any person to be at Pennhurst.”

TRIAL COURT RULING

After a thirty-two-day trial, Judge Raymond Broderick found that Pennhurst was overcrowded, understaffed, lacked programs needed for adequate habilitation, and employed restraints, including seclusion rooms, physical restraints and psychotropic drugs “as control measures in lieu of adequate staffing.” Pennhurst was “hazardous to the residents, both physically and psychologically,” was “not only not conducive to learning new skills, but it is so poor that it contributes to losing skills already learned.” Judge Broderick ruled that the defendants had violated the residents’ (1) “constitutional right to be provided with minimally adequate habilitation under the least restrictive conditions consistent with the purpose of the commitment” (pursuant to the due process clause and the Thirteenth Amendment right to be free from cruel and unusual punishment); (2) constitutional right to be free from physical harm (pursuant to the Eighth and Fourteenth Amendments); and (3) constitutional right to nondiscriminatory habilitation, and to be free from confinement, isolation, and segregation (under the equal protection clause of the Fourteenth Amendment). The court found that these rights had been violated, and ordered Pennhurst and its officials to find “suitable community living arrangements” for all of the residents of Pennhurst, with community services necessary to provide the residents with “minimally adequate habilitation.”

MULTIPLE APPEALS

Judge Broderick’s decision was appealed, which began something of a rollercoaster – a protracted series of appeals, reversals or affirmations of decisions, remands, appeals to the U.S. Supreme Court, re-remands, and re-re-remands. David Ferleger would later note with some amazement: “I argued the Pennhurst case three times in the Supreme Court.”

The first appeal to the Supreme Court occurred after the Third Circuit Court of Appeals decided that it did not have to reach the issue of the constitutional grounds relied on by the trial court to reach a decision if it upheld Judge Broderick’s ruling based on the Developmental Disabilities Assistance and Bill of Rights Act (DDABRA).[12]  The Third Circuit recognized that “t]he federal courts have long been directed to decide whether causes of action can be supported on statutory grounds before they adjudicate constitutional law issues.”[13]  After reviewing the language and legislative history of DDABRA, the Court of Appeals ruled that the Act provided the plaintiffs with a federal statutory “right to habilitation” in “the least restrictive environment.”[14] The defendants appealed that ruling to the Supreme Court.

BRIEF REQUESTED FROM ME

A short time later, as they were beginning to work on their Supreme Court briefs, David Ferleger, representing the plaintiff class, and Tom Gilhool, representing PARC, hatched the idea that it would be helpful to have an amicus brief focusing on the history and legislative history of developmental disabilities legislation, particularly DDABRA, perhaps with the support of state “protection and advocacy systems (P&As),” funded under DDABRA to protect and advocate the human and legal rights people with developmental disabilities. At the time, I was working at the Developmental Disabilities Law Project (DDLP), funded primarily by federal developmental disabilities money, with the responsibility of assisting and coordinating the P&As. After discussions with David and Tom, I undertook to develop an amicus brief in the Halderman case, and invited the association of P&A executive directors, the National Association of Protection and Advocacy Systems (NAPAS), to spearhead the effort and help round up P&As to sign onto the brief. Ultimately, I represented NAPAS and 45 state P&As.

TOM CHECKS HIMSELF INTO PENNHURST

During the period when I was conceptualizing and beginning to write the first draft of the amicus brief, I learned that Tom had gone to live for a while at Pennhurst, reportedly because he wanted to immerse himself in what living at the institution felt like up close and personal, to get himself in the right frame of mind for his appearance at the high court. I never talked with Tom about what he got out of his experience of the unorthodox residency at Pennhurst, but it seemed consistent with what I knew of his way of throwing himself heart and soul into causes he was committed to, even by means of a course of action that might seem unusual or radical to others.

OUR HALDERMAN BRIEF

The amicus brief that I, supported by my DDLP colleagues Dawn Oxley Musgrave and Patrick P. Spicer, was preparing had straightforward objectives. It described the history and purposes of DDABRA, including the DD Bill of Rights, which incorporated states’ rights respect for differences and sovereignty, a private right of action, and establishment of P&As. We emphasized that the DD Bill of Rights contained a right to treatment, services, and habilitation in a setting least restrictive of the individual’s personal liberty, with an emphasis on community living alternatives to institutionalization.

The brief documented that the P&As were explicitly established “to protect and advocate the rights of persons with developmental disabilities,”[15] described accomplishments of the P&As in fulfilling that statutory mandate, and stressed that an enforceable DD Bill of Rights was essential to accomplishment of their vital mission. At the end of our brief, I wrote: “In order not to stultify the Congressional intent expressed in §§ 6010 and 6012 [of DDABRA], and the initiatives of the individual states in authorizing and appointing their P & A agencies, the decision of the Circuit Court of Appeals should be affirmed.”

STRATEGY SPLIT: DEMAND SHUTDOWN OF PENNHURST OR NOT

We managed to squeeze all these arguments and discussion within the Supreme Court’s 30-page limit for amicus briefs, and felt pretty good about how our brief would complement and harmonize with the approaches that would be taken in the plaintiffs’ briefs. In a discussion with Tom, however, I learned of a potential rare point of significant disagreement between us. The Third Circuit had upheld the district judge’s ruling that DDABRA provided residents of Pennhurst with a right to “treatment” or “habilitation,” that they could sue to enforce that right, and that such a suit could be filed in federal court. But the circuit court expressly did not affirm the lower court’s orders directing the eventual closing of Pennhurst, and banning all future admissions to Pennhurst.[16] The appellate court, while observing that “[t]he clear preference of the Act … is deinstitutionalization,” added that for some residents “the Act contemplates that institutionalization might be appropriate once adequate habilitation and living conditions are established.”[17]

In their brief for the plaintiff class respondents, David Ferleger and Penelope Boyd called upon the Supreme Court to “fully affirm the District Court’s orders, including the requirement that the large isolated and irredeemable institution called Pennhurst be replaced through the existing Pennsylvania continuum of structured community residential and support services.” Hedging their bets in accordance with attorneys’ option to “plead in the alternative,” their next sentence declared that “[i]n the alternative, the decision of the Court of Appeals should be affirmed ….” While presenting these two alternatives – to affirm the trial court’s order that Pennhurst was to be closed down or to affirm the Third Circuit’s decision that the institution was not required to close – the brief for the plaintiff class respondents put a finger on the scale in favor of the latter, by commenting that the courts’ decisions “were not, and as a practical matter could not be intended to wipe the slate clean by one bold stroke …. Nor did Congress mandate the impossible. A states’ effective action to provide individually appropriate habilitation under § 6010 of [DDABRA] cannot be completed in a day, but it can be undertaken.”[18]

For his part, Tom consistently viewed the Halderman case as a vehicle for closing down Pennhurst as soon as possible. Judge Broderick’s decision ordering Pennhurst and its officials to find suitable community living arrangements for all of the residents of Pennhurst pretty much fulfilled Tom’s hopes. The Third Circuit’s partial affirmation, however, did not sit well with him because it did not uphold Judge Broderick’s orders directing the eventual closing of Pennhurst and banning all future admissions.

My own view was (and is) that Pennhurst and its ilk were inhumane, dangerous, and overcrowded places, that provide little if any care, habilitation, training or even basic nourishment for the residents. They deserve the characterizations as “snake pits,” “human warehouses,” “virtual prisons,” “hell-holes,” “horrific,” and the like that they have at times been accorded. I am totally in agreement with the sentiment of legendary developmental disabilities leader, legal advocate, and scholar, Gunnar Dybwad, whom I worked with on the case of Horacek v. Exon in challenging the confinement and mistreatment of people with developmental disabilities at a Nebraska residential institution, who said that he looked forward to one day sitting atop a bulldozer and knocking down walls to begin demolishing the “Beatrice State Home for the Mentally Retarded.”

DIVERGING VIEWS

Tom, Ferleger, and I all shared Judge Broderick’s belief that Pennhurst ultimately needed to close and be replaced by community living programs and supports. But it turned out that Tom and I had different views on how to get there, particularly in the context of the Supreme Court proceeding we were working on. He wanted to push the Supreme Court to direct that Pennhurst be closed. The problem as I saw it was that what was before the Court was an appeal of the decision of the Third Circuit under DDABRA that was in favor of the plaintiffs but held that Pennhurst did not have to close. Because of my knowledge of DDABRA and my research and analysis for our brief, I was convinced that, while DDABRA had provisions that provided a basis for ruling, as the Court of Appeals had held, that institution residents had a right to habilitation in the least restrictive alternative and requiring the development of community living alternatives, it unfortunately did not include language warranting the closing of a state residential facility.

I subscribed to the view of many advocates and developmental disability professionals I had spoken to that the most promising means for getting rid of institutions was to develop community services programs as an alternative to state residential institutions, while also setting standards for improving the conditions and staffing, and reducing the numbers of residents in existing institutional facilities. An underlying impetus for establishing large state institutions in the first place had been the fiscal benefits of “economy of scale.” The combination of reducing how many people were housed in institutions, plus requiring significant expenditures to provide adequate numbers of properly trained staff; proper nourishment; necessary repairs and improvements to the physical facilities; and decent living conditions, would over time make institutions fiscally unsustainable.

TRYING TO AVOID TRAGIC CONSEQUENCES OF PRIOR MISAPPLICATION OF “DEINSTITUTIONALIZATION”

Many of us thought such an approach of constraining, regulating, and phasing down institutions to precipitate shutting their doors preferable to precipitously chucking residents out without having made certain that alternative services and programs were available for them to go to. The latter, a catastrophic policy blunder, had occurred in regard to mental health facilities in the mid-1950s and 1960s when a number of states, under the rationale of “deinstitutionalizing” residents of mental health facilities, abruptly threw them out of such facilities without any adequate arrangements for their future care, treatment, or housing. An editorial in the New York Times would later explain the history of “deinstitutionalization”: “Through the 1960s and 70s, that meant dumping mental patients out of state hospitals onto local communities, with promises of community treatment that never came true. What deinstitutionalization ended up meaning was ‘homeless.’”[19]

To avoid the disastrous specter of such “dumping” of Pennhurst residents, a strong argument could be made that alternative community service programs had to be developed before the closing of Pennhurst should be endorsed. Courts had been reluctant to rule that states had to terminate their residential institutions, and the High Court would be unlikely to require such closure before community alternatives could be shown to be in place and functioning properly.

Tom passionately believed that the Halderman case should be the vehicle for putting an end to Pennhurst. The plight of Pennhurst residents had been the concern that had brought PARC to enlist Tom’s aid in the first place, and, while he had suggested the option of the special education case that led to the PARC decision and devised the successful legal strategy in that case, challenging confinement at Pennhurst was still an overriding priority.

During a meeting with Tom at our offices, after I had explained the reasons I was not planning to argue that DDABRA sounded the death-knell for Pennhurst, he looked me straight in the eye and said, “Have the courage of your convictions, Bob.” I was taken aback. Luckily, by that time I had enough experience and success to have gained sufficient confidence in my legal analysis and professional judgment that I did not wilt when my hero and a leading light in the disability rights firmament accused me of falling short in my advocacy because I was lacking in courage. I retorted that it was not a question of my courage; it was a matter of legal strategy – of trying to win this important case – and that we were not going to prevail in convincing the Supreme Court that the feeble language of DDABRA mandated the closing of a large state institution. If we could succeed in getting the Court to affirm Judge Broderick’s decision, it would be a major advance in the law; would address some of the worst practices, abuses, and conditions at Pennhurst; while preserving for future proceedings the constitutional and other legal grounds for ultimately closing Pennhurst that Judge Broderick had recognized.

Not that I had had any doubt, since I first visited and became involved in challenges to institutions confining people with disabilities, that doing away with such abominations was an absolutely urgent priority in protecting the basic human and legal rights of institution residents. In addition to direct involvement in deinstitutionalization and community alternatives cases, I had devoted many pages of my writing to documenting the horrible abuses and other inhumane aspects of, and calling for the elimination of, such institutions,[20] in the spirit of Burton Blatt’s vivid exclamation, “Scratch an institution and the pus oozes.”[21]  To me, the issue was not about the destination – getting rid of those damnable institutions – but rather finding a route that had a realistic chance of moving us closer to getting there; and I was convinced that proclaiming to the Supreme Court that DDABRA had outlawed institutions was not a viable path. Both Tom and I knew that there were nuances and complexities entangled in our disagreement, as, for example, that improving conditions at institutions might reduce pressure for shutting them down, and that a court might order phased-out closing of an institution, but our basic difference was over our diverging assessments of how far the Supreme Court would go in applying DDABRA.

HOW OUR DISAGREEMENT PLAYED OUT

In the end, I went ahead with my approach and our brief asked the Supreme Court to affirm the decision of the Third Circuit and did not contend that the appeal in the case should result in ordering the closure of Pennhurst. Tom persisted in believing that my position did not go far enough. Thankfully, however, I did not see any estrangement in my subsequent working relation with Tom; it was one of numerous instances in which benevolent lawyers can argue vehemently based upon principle over an issue, but still maintain respectful relationships with one another.

It turned out that our dispute was somewhat beside the point, as the Supreme Court ruled that DDABRA was not enforceable at all. The Third Circuit’s attempt to sidestep the other legal grounds upon which Judge Broderick had relied by focusing on DDABRA fell flat on its face. The litigation continued for a long time and led to reversal of some aspects of Judge Broderick’s initial ruling, including reliance on Pennsylvania state law, as inconsistent with the Eleventh Amendment to the U.S. Constitution. In 1985, while these holdings were on appeal, the parties reached a settlement agreement requiring community living arrangements for the remaining residents of Pennhurst. Pennhurst was finally closed on December 9, 1987.

ENORMOUS IMPACT

Along with David Ferleger. Tom was a major force in the Halderman v. Pennhurst marathon saga, as he had been in the PARC case. In each of these cases (among many others), he made an indelible mark in the annals of disability rights law. In all of these battles, Tom sought to use his skills and knowledge to raise the bar of legal rights for people with disabilities as high as he possibly could. That attitude was exemplified in a statement he made when asked if people were vigilant enough in advocating and preserving the legal rights of those with disabilities:

Not nearly, not nearly, and there are terrible traps. The largest one, the largest trap for the Disability Movement, for any movement, for anyone with a need and a deep wish to see the equality commitments of the United States recognized and more fully realized – it’s summed up in one of two phrases, “that’s the best we can do,” or “it made no sense to try because we wouldn’t have gotten anything.”[22]

His appetite for securing the most equality and justice he could garner for those he represented is a big part of Tom’s legacy and a worthy aspiration for all of us involved in disability rights advocacy.

At an event titled “TASH’s Outstanding Leadership in Disability Law Award Dinner and Symposium Honoring Thomas K. Gilhool,” in Washington in June 2017, I had the chance to tell Tom personally how much I treasured and respected him, and appreciated the huge impact he had on my career and on the course of civil rights of people with disabilities in America. He grinned sheepishly at me as if all he had done was not such a big deal. But of course it was. His contributions were truly pivotal and historic, and he is surely missed.

 

[1] Public Interest Law Center, Remembering Thomas K. Gilhool, at https://www.pubintlaw.org/law-center-news/remembering-thomas-k-gilhool-a-civil-rights-champion/

[2] Beginning in 1973, the National Association for Retarded Citizens (NARC) underwent a series of name changes, from National Association for Retarded Children to Association for Retarded Citizens, to Association for Retarded Citizens of the United States and then The Arc of the United States. Its state and local chapters followed suit. In recent times, the term “retarded” has come to be considered pejorative and has fallen out of use. For simplicity and consistency, in this posting, the Pennsylvania Association for Retarded Citizens will be abbreviated as “PARC,” other state and local chapters as “Arcs,” and the National Association as “The Arc,” except in case names and other titles.

[3] Pennsylvania Association for Retarded Children v. Commonwealth of Pennsylvania, 343 F.Supp. 279 (E.D.Pa. 1972).

[4] In my law school case book (1980), I wrote that “[t]he PARC case generated a great deal of publicity and stimulated similar litigative efforts in other parts of the country. As one of the first statewide, federal, class action lawsuits brought on behalf of [persons with disabilities], it is often considered the cradle of the whole legal rights movement for [people with disabilities].” Robert Burgdorf, The Legal Rights of Handicapped Persons, at p. 90, n. 1.

[5] See, e.g., Thomas K. Gilhool, “Legal Advocate for Deinstitutionalization and the Right to Education for People with Developmental Disabilities” conducted by Fred Pelka between 2004 and 2008, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2010, found at https://digitalassets.lib.berkeley.edu/roho/ucb/text/gilhool_thomas.pdf ; Temple University, Visionary Voices, Interviews, Thomas K. Gilhool, Chapter 10: Impact of Right to Education Case on Tom’s Career, Lisa Sonneborn, Project Coordinator, found at http://www.temple.edu/instituteondisabilities/voices/detailVideo.html?media=006-10

[6] Robert Burgdorf, The Legal Rights of Handicapped Persons, at p. 90, n. 1 (1980).

[7] Michael Kindred, “Notes on the Personal Support System Needed for Developmentally Disabled Persons: Legal Advocacy, Lay Advocacy, and Protective Services,” Sec. I, p. 1 (Sept. 9, 1977), enclosed with letter of September 12, 1977, to Miles Santamour of the President’s Committee on Mental Retardation, found at https://mn.gov/mnddc/parallels2/pdf/70s/77/77-NPS-MKA.pdf

[8] Pub. Law No. 93-313, Section 504, 87 STAT. 394.

[9]The workshop is described in “Law Center Enters Second Year,” Journal of Leaning Disabilities, vol. 7, issue 3, p. 183 (March 1, 1974, found at https://journals.sagepub.com/doi/abs/10.1177/002221947400700311?journalCode=ldxa

[10] Halderman v. Pennhurst State School and Hosp., 610 F. Supp. 1221, 1222 (E.D. Pa. 1985).

[11] Halderman v. Pennhurst State School and Hosp., 901 F.2d 311, 314 (3d Cir. 1990).

[12] Halderman v. Pennhurst State School & Hospital, 446 F.Supp. 1295 (E.D. Pa (1978); aff’d in part and modified on appeal, 612 F.2d 84 (3d Cir. 1979); rev’d and remanded, 451 U.S. 1 (1981). DDABRA was enacted in 1975 as Pub.L. 94-103, 89 STAT. 487.

[13] 612 F.2d 84, ¶ 25 (3d Cir. 1979).

[14] Id. at ¶¶ 41 & 96.

[15] 42 U.S.C.§ 6012.

[16] 612 F.2d 84, ¶ 138 (3d Cir. 1979).

[17] Id. at ¶ 96.

[18] Brief for Respondents Terri Halderman, et al., Halderman v. Pennhurst State School & Hospital, at p. 72 (October 20, 1980).

[19] The New York Times, Opinion, “Redeinstitutionalization” (Aug. 25, 1986) found at https://www.nytimes.com/1986/08/25/opinion/redeinstitutionalization.html

[20] See, e.g., Burgdorf & Burgdorf, “A History of Unequal Treatment: The Qualifications of Handicapped People as a ‘Suspect Class’ Under the Equal Protection Clause,” 15 Santa Clara Lawyer 855, 883-898 (1975); Burgdorf, The Legal Rights of Handicapped Persons: Cases, Materials, and Text, Ch. 6 (1980).

[21] Burton Blatt, Exodus from Pandemonium, 158 (1970).

[22] The Public Interest Law Center, “Remembering Thomas K. Gilhool” (2020), https://www.pubintlaw.org/law-center-news/remembering-thomas-k-gilhool-a-civil-rights-champion/ quoting Temple University, Visionary Voices, Interviews, Thomas K. Gilhool (Lisa Sonneborn, Project Coordinator), Chapter 10: “Impact of Right to Education Case on Tom’s Career,” at http://www.temple.edu/instituteondisabilities/voices/detailVideo.html?media=006-10