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Opening in 1948, Willowbrook State School was at the time the largest institution in the world that was used for the treatment of those with developmental disabilities. Though Willowbrook was the largest institution at that time there were many smaller institutions all over the country and these institutions actually existed in Europe for many years before the models were brought to the United States. Since the opening of the school Willowbrook appeared as a safe and perfect place for their residents; although we know now that was not the truth.

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These changes were revolutionary. They can be linked to the placement of people with developmental disabilities in community residences, the growth of voluntary agencies, the expansion of special education and day programs, and the training of direct-care workers, therapists, teachers, and administrators.
Cover page for the class-action lawsuit that led to the Consent Judgement in 1975, listing the plaintiffs, made up of advocacy organizations and individual residents with their guardians.
Plaintiffs:
New York Association for Retarded Children, Inc.;
Benevolent Society for Retarded Children, Willowbrook Chapter, of the New York State Association for Retarded Children;
Lara R. Schneps, by her father Murray B. Schneps;
Nina Galin, by her mother Diana Lane McCourt;
Anthony Rios, by his father, Jesus Rios;
David Amoroso, by his mother Rosalie Amoroso;
Rose Evelyn Cruz, by her father Francisco M. Cruz;
Barry Friedman, by his father Melvin Friedman;
Lowell Scott Isaacs, by his father Jerome M. Isaacs;
Antoinette Magri, by her mother Sandra Magri.
Defendants:
Nelson Rockefeller;
Alan D. Miller, M.D.;
Roderic Grunberg, M.D.;
Robert E. Patton;
Charles Schleifer;
Jack Hammond, M.D.;
Robert W. Hayes;
Bertram Pepper, M.D.;
A. Anthony Arce, M.D.;
James M. Murphy, M.D.;
Manny Sternlicht;
Milton Jacobs, M.D.

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These changes were revolutionary. They can be linked to the placement of people with developmental disabilities in community residences, the growth of voluntary agencies, the expansion of special education and day programs, and the training of direct-care workers, therapists, teachers, and administrators.

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Willowbrook and the Lessons We Must Never Forget 

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Willowbrook and the Lessons We Must Never Forget 

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This article touches on the living conditions that residences faced in Willowbrook State School. Lack of funding by the government resulted in the resident to staff ratio to grow to levels that were impossible to sustain. Residences were living in filth, left to fend for themselves, and being neglected. A lot of the mistreatment in Willowbrook stemmed from staff being uneducated, there was not much information on disabilities, and misconceptions about people who are disabled.

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Willowbrook and the Lessons We Must Never Forget

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Throughout history and in the not-so-recent past, many people with developmental disabilities were considered ill and needing constant medical care. For some New York families with disabled loved ones in the second half of the last century, doctors advised that Willowbrook State School in Staten Island was the answer.

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This exert goes in depth on the Hepatitis study that was done by Dr. Krugman in the walls of Willowbrook State School. Because the conditions at the school were so bad and disease ran rampant Dr. Krugman began a study to see how bad the problem was getting; he thought that discovering a way to cure or make someone immune to hepatitis could benefit people all around the world. Although his studies did benefit the medical world, it was done in immorally and unethical ways; by infecting patients by putting stools with hepatitis in their food.

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The Willowbrook State School was a housing institution created by New York State in 1947 to house intellectually disabled children and young adults. At the time, there were little to no public resources for caregivers, and state schools like Willowbrook were created to address that problem. Conditions at Willowbrook were horrific - rampant disease, neglect, and abuse meant most individuals lived sad lives on the grounds of the institution. Robert Kennedy, then-senator of New York, described it as a "snake pit" after his unplanned visit in 1965 exposed horrific conditions . Dr. Saul Krugman, a professor of epidemiology, was brought to Willowbrook in 1955 to control and mitigate the spread of infectious diseases that spread like wildfire through the halls. However, Krugman didn't necessarily prevent the spread of disease; in some cases, explicitly encouraged it amongst residents, so he could test his theories on possible treatments. Thus, the Willowbrook Study was born.

Built on Staten Island to originally house 4,000 patients, the institution quickly swelled in population to 6,000, peaking in 1969 at 6,200 [10]. There were often not enough resources, including basic clothing and staff, to go around. Conditions at Willowbrook were grim; some 60% of patients were not toilet trained, and others could not feed or bathe themselves [9]. Abuse and neglect ran rampant, along with infectious diseases that patients suffered from due to unsanitary conditions. Facing these problems, the directors of the institution hired Dr. Saul Krugman from NYU medical school in 1955 to deal with the state of endemic diseases facing patients at Willowbrook. Dr. Krugman began by implementing an epidemiological survey to calculate the extent of the problem. These surveys discovered that children had a 1 in 2 chance of catching hepatitis in their first year at Willowbrook [6]. Further surveys showed 90% of patients had markers for hepatitis A, indicating a previous infection [6]. Hepatitis A is a disease that affects the liver, causing jaundice, loss of appetite, abdominal pain, and is usually spread via fecal to oral contamination. Dr. Krugman's studies also discovered the strain of hepatitis B, a sexually transmitted disease that lived in both adult and child populations in Willowbrook. In an institution where over half of the population was not toilet trained with not enough caretakers to go around, it was unquestionable how hepatitis became such an intense and ingrained problem in Willowbrook's halls [3].

Faced with these grim conditions, Dr. Krugman came to a conclusion; discovering a way to inoculate children against hepatitis would help not only those institutionalized but could reap benefits around the world. In short, he wanted to use the conditions already established at Willowbrook to create a vaccine for hepatitis. Gathering consent from parents, Dr. Krugman and his team ran several experiments to observe the benefits of gamma globulin injections, a type of antibody-containing blood plasma, from those who have recovered from hepatitis into those who have not yet been infected [1]. Some experiments exposed children to hepatitis with no administered globulin injections; others were injected and then exposed to the virus; and some were injected and were never exposed to the virus, all carefully observed by the medical team. One way the study exposed children to the hepatitis virus was by taking the feces of infected residents and combining it with chocolate milk for the study's participants to consume unwittingly [10]. The children who participated in these studies were housed separately from the rest of the patients, in newer, cleaner facilities with round-the-clock care, while the other residents of Willowbrook still lived in squalor [6]. Krugman's studies later encapsulated measles and rubella studies, resulting in his 20+ year stay as a medical director at Willowbrook. Only much later in his career did he receive backlash from the medical community regarding his study participants and methods.

Krugman claims he did not choose Willowbrook because he could prey on vulnerable disabled children. Instead, he argues that his experiments helped the children at Willowbrook and defended their morality and ethics until the day he died. He argued hepatitis was already rampant at Willowbrook; anyone who came to live there was bound to get it at some point . Under his lab's controlled experiments, Dr. Krugman argued, the patients had better care and a better chance of survival than in the main facilities at Willowbrook [6]. In the study, residents had the opportunity to become immune to hepatitis without ever falling ill and facing its dangerous effects through Dr. Krugman's experiments. Even if they did, they had access to excellent care from his team of doctors and nurses. However, Krugman missed a key component of any study's ethical backing. Purposefully infecting children with hepatitis, no matter how "likely" it is they will get it in the future, puts them needlessly in harm's way. No matter how well cared for the patients were, hepatitis is known to be a potentially fatal disease. Additionally, the infection method of feces-contaminated food and drink is a deplorable method that hints at possibly worse conditions of the Willowbrook study. Nobody, no matter what they've consented to, should be unwittingly drinking human excrement. This egregious violation of moral and ethical standards, even to professionals in the 1950s and 60s, shows how poorly these patients were treated. Every physician takes an oath to first do no harm. Dr. Krugman violated this with his treatment of intellectually disabled children at Willowbrook State School.

Other issues regarding the Willowbrook Study were the methods of informed consent. On paper, everything seemed fine. Potential patients' parents were given a tour of the facility, allowed to ask questions to the researchers, and were given various forms of education on the purpose of the study. They met with a social worker and were allowed to discuss the study with their private doctors if they wanted to. Parents knew they could withdraw from the study at any time. No orphan or ward of the state was allowed to become a potential participant in the hepatitis studies. Dr. Krugman also asserts that their methods of informed consent were innovative, and paved the way for the standard of human experimentation. However, there is evidence to suggest that the undue influence of admittance to Willowbrook is a further kink in Krugman's ethical armor. Willowbrook was already inundated but was one of the only state institutions for intellectually disabled children operating in New York State. Parents believed that the only way to get their child into the selective school was by allowing them to participate in the hepatitis study, as that gave them priority registration. Otherwise, these caregivers had practically no options. State institutions were some of the only interventions available at the time. Willowbrook already had a huge waitlist while operating at 1.5x capacity. Although sending your child to an overpopulated institution may not seem like the best option, sometimes it was all these families had to provide care for their loved ones. This instance of undue influence further establishes how unethical Dr. Krugman's study was.

What brought the downfall to a 20-year study? Geraldo Rivera, an up-and-coming investigative reporter, created a documentary airing on ABC in 1972 showing the horrible abuse and neglect people at the Willowbrook State School had to endure. Willowbrook: The Last Great Disgrace led a call-to-arms from the people of Staten Island, who were horrified such an atrocity could occur on their very shores. A class-action lawsuit was filed that same year, with a final ruling that Willowbrook had to begin closing procedures in 1975. Around this time, other members of the medical field started criticizing Dr. Krugman's studies and questioned the necessity of human experimentation for immunization studies. Dr. Krugman's later studies developing hepatitis B vaccines using chimpanzees created conflict in the medical community, as chimpanzees are considered an acceptable model for human epidemiology studies for vaccine development, yet Krugman decided on human trials before primates. However, even after the study ended at Willowbrook, Dr, Krugman was still lauded for his advancements in the epidemiology field with not just hepatitis, but also developments of measles and rubella vaccinations later in his time at Willowbrook . Until the very end, Krugman defended his choices and decisions regarding the treatment and methods used at Willowbrook State School.

Public outrage over the conditions at Willowbrook spurred several laws and acts into being over the 70s and 80s. After the 1972 class action lawsuit was settled in 1975, the Willowbrook Consent Decree was signed, stating that the institution had to start deflating its population from around 5,000 to 250 in six years, among other reforms regarding the treatment of patients at the facility. Other acts, such as the Education for All Handicapped Children Act (1975) and the Bill of Rights Act (1975) worked to ensure disabled populations were protected in society. Other programs, such as the Protection and Advocacy System of the Developmental Disabilities Assistance were formed to further preserve the rights of disabled individuals. The Belmont Report, published in 1976, also worked to establish ethical standards regarding human experimentation revolving around their three principles: Respect of Persons, Beneficence, and Justice.

The tragedy of Willowbrook State School is a permanent mark on the scientific community's mistreatment of human research participants. The unacceptable treatment and conditions that children and adults were forced to face while institutionalized were a disgrace to scientific research. While there have been many scientific discoveries resulting from this study, including the creation of a hepatitis A & B vaccine, the ends never justify the means in human experimentation.

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By J Capone, Agriculture and Environmental Education Major, '24 The Willowbrook State School was a housing institution created by New York State in 1947 to house intellectually disabled children and young adults.

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The Willowbrook Hepatitis Studies Revisted: Ethnical Aspects 

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The Willowbrook Hepatitis Studies Revisted: Ethnical Aspects 

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This document was written by Dr. Krugman one of the doctors who carried out the hepatitis study within Willowbrook. The ethicality is discussed in the first hand account a Krugman explains that hepatitis was already spreading all through the institution and it was almost always a mild case. Dr. Krugman along with his colleagues used this information in order to justify the intentional infection of residents, although parents did consent and everything seemed fine; parents did not really know the full truth. K

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50th Anniversary of the Willowbrook Expose 

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50th Anniversary of the Willowbrook Expose 

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This article deals Geraldo Rivera's expose about the Willowbrook institution and how it lead people to see the truth about this place. This video revealed the terrible living conditions, the inhumane practices, the overpopulation of residences, and the abuse. After the release of this video the public were outraged at the treatment that people were facing at the hands of people who supposed to be caring for them. There was a lawsuit that emerged from the parent of residents at Willowbrook that causes the NY state senator to create the first Protection and Advocacy for People with Developmental Disabilites.

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50th Anniversary of the Willowbrook Expose

This month marks the 50 th anniversary of the Willowbrook expose, a very important part of the disability rights movement. In 1972 Geraldo Rivera, a reporter, did an exposé called Willowbrook: The Last Disgrace,on the conditions at Willowbrook State School which was an institution for children with intellectual disabilities located on Staten Island in New York City from 1947 until 1987. Rivera exposed the institution's serious overcrowding, dehumanizing practices, dangerous conditions and regular abuse of residents. The school was designed for 4,000, but by 1965 it had a population of 6,000.

Following the exposé, there was public outrage, a lawsuit from parents of Willowbrook residents that alleged conditions at Willowbrook violated the constitutional rights of the residents, and a legislative push for change. The expose spurred NY state's senior senator, Jacob Javits, to action, incorporating the first P&A program - Protection and Advocacy for People with Developmental Disabilities (PADD) - in 1975 in the renewal of the Developmental Disabilities Assistance and Bill of Rights (DD) Act. There is a designated P&A in every state and territory. Disability Rights South Carolina is the designated P&A for South Carolina.

One key to making the P&A system successful was that Congress gave every P&A broad authority to access service providers that provide services, care, and treatment to people with disabilities. This includes, but is not limited to, schools, group homes, day programs, adult care homes, nursing homes, psychiatric hospitals, and residential treatment facilities. With our access authority we can go into any setting where services are provided, unannounced, to check in on the people who are there. The people who run these settings must allow us to come in and speak to anyone we want. We can ask questions and look for things that could hurt someone. We can also educate the individuals served and the staff about the rights of people with disabilities. Our access authority applies to both state-run and privately owned settings.

Congress made it clear that P&As were here to make sure Willowbrook never happened again. Since the beginning of the P&A system, Disability Rights South Carolina's core mission has been to stop and end the abuse and neglect of people with disabilities. Although, we have achieved a lot in the 50 years since this expose, we must also recognize there is much more still to do.
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50th Anniversary of the Willowbrook Expose - Disability Rights South Carolina

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This month marks the 50th anniversary of the Willowbrook expose, a very important part of the disability rights movement. In 1972 Geraldo Rivera, a reporter, did an exposé called Willowbrook: The Last Disgrace, on the conditions at Willowbrook State School which was...

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This explains the lawsuits against Willowbrook school and how they influenced education and protection for those who are disabled. After the expose by Rivera parents pushed for a lawsuit against Willowbrook; although there were many negotions after about three years something was finally put in place. The case was settled by Judge Judd signing the Willowbrook Consent Judgment. However there was still more to be done years to come as the Developmental Disabilites Assistance and Bill of Rights Act, The Education for All Handicapped Children Act, and The Civil Rights of an Institutionalized Person Act were enacted by legislation.

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New York State Association for Retarded Children v. Carey

A watershed case in the evolution of the legal rights of people with disabilities to live in dignity arose out of public awareness of the horrific conditions under which children and adults with disabilities were living at the Willowbrook State Developmental Center in New York. This case set important precedents for the humane and ethical treatment of people with developmental disabilities living in institutions. This, in turn, served as the impetus for accelerating the pace of community placements for people with developmental disabilities, expanding community services, increasing the quality and availability of day programs, and establishing the right of children with disabilities to a public education.

Inhumane Conditions at Willowbrook

Willowbrook was a complex of buildings on Staten Island housing children and adults with developmental disabilities. At its highest population, in 1969, 6,200 residents were living in buildings meant to house 4,000. Understaffed, overcrowded and underfunded, Willowbrook was little more than a "human warehouse," according to William Bronston, a physician at Willowbrook. The institution's overcrowding fostered abuse, dehumanization, and a public health crisis. Hepatitis was so rampant that several researchers took advantage of the situation to use residents as participants in a controversial medical study in which residents were intentionally exposed to the deadly virus, without their consent, in order to test the effectiveness of various vaccines.

In 1965, Senator Robert Kennedy paid an unannounced visit to Willowbrook. He found thousands of residents "living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo." Kennedy went on to describe the institution as a "snake pit." The visit put conditions at Willowbrook into the national spotlight and the state of New York responded by developing a five-year improvement plan. However, after making minor adjustments, conditions at the institution quickly reverted to the inhumane conditions that had thrust it into public consciousness.

In 1972, ABC News investigative reporter Geraldo Rivera again drew national attention to Willowbrook with a television exposé that was watched by millions. Willowbrook: The Last Disgrace, exposed the institution's serious overcrowding, dehumanizing practices, dangerous conditions and regular abuse of residents. The public was again outraged. However, this time, the outrage served to spur parent advocacy groups to take action in federal court.

The Willowbrook Lawsuit

Following the Rivera exposé, parents of Willowbrook residents filed a class action suit in U.S. District Court for the Eastern District of New York on March 17, 1972. The lawsuit alleged that conditions at Willowbrook violated the constitutional rights of the residents. Parents outlined multiple violations, including:

Confining residents for indefinite periods;

Failing to release residents eligible for release;

Failing to conduct periodic evaluations of residents to assess progress and refine goals and programming;

Failing to provide habilitation for residents;

Not providing adequate educational programs, or services such as speech, occupational, or physical therapy;

Overcrowding;

Lack of privacy;

Failure to provide protection from theft of personal property, assault, or injury;

Inadequate clothing, meals, and facilities, including toilet facilities;

Confining residents to beds or chairs, or to solitude;

Lack of compensation for work performed;

Inadequate medical facilities; and

Understaffing and incompetence in professional staff.

The lawsuit sought immediate injunctive relief to improve conditions at Willowbrook, including hiring more staff, providing adequate medical care, prohibiting the use of seclusion and improper physical and chemical restraints, and providing adequate and appropriate clothing and physical conditions for residents. The plaintiffs alleged that the existing conditions violated the residents' constitutional right to treatment under the Due Process Clause of the Fourteenth Amendment, and that their denial of a public education violated the Equal Protection Clause of the Fourteenth Amendment.

In April 1973, U.S. District Court Judge Orrin G. Judd rejected the plaintiffs' arguments that the Due Process Clause guaranteed a right to treatment and that the denial of public education violated the Equal Protection Clause. However, he did find that the conditions in Willowbrook violated the constitutional right of persons living in state custodial institutions to be protected from harm. According to Judge Judd, the plaintiffs' constitutional right to protection from harm in a state institution meant that the residents of Willowbrook were "entitled to at least the same living conditions as prisoners." This right, he continued, "may rest on the Eight Amendment, the due process clause of the Fourteenth Amendment or the equal protection clause of the Fourteenth Amendment (based on irrational discrimination between prisoners and innocent mentally retarded persons)." Accordingly, Judge Judd granted much of the requested injunctive relief, including prohibiting the use of seclusions and restraints, increasing medical, therapeutic and recreational staffing, requiring maintenance, and requiring regular progress reports.

With this injunctive order in place, the case proceeded to trial on October 1, 1974, with the parties continuing negotiations for months afterwards. The case was settled on April 30, 1975, when Judge Judd signed the Willowbrook Consent Judgment: New York State Association For Retarded Children, Inc., et al., v. Hugh L. Carey, 393 F. Supp. 715 (1975).

The Willowbrook Consent Judgment

The Willowbrook Consent Judgment set forth guidelines and requirements for operating the institution and established new standards of care for all Willowbrook residents at the time of the settlement. These standards of care were "not optimal or ideal standards, nor... just custodial standards." They were based on the recognition that people with developmental disabilities, "regardless of the degree of handicapping conditions, are capable of physical, intellectual, emotional and social growth, and upon the further recognition that a certain level of affirmative intervention and programming is necessary if that capacity for growth and development is to be preserved, and regression prevented."

The Consent Judgment outlined specific procedures and instructions for treatment of residents, covering issues such as resident living, the environment, programming and evaluation, hiring of personnel, education, recreation, food and nutrition, dental and medical care, therapy services, use of restraints, conditions for residents to provide labor to the facility, and conditions for research and experimental treatment.

Significantly, the Consent Judgment also declared as the primary goal of the institution and the New York Department of Mental Hygiene to "ready each resident...for life in the community at large" and called for the placement of Willowbrook residents in less restrictive settings. The Consent Judgment set a goal of reducing the number of residents living at Willowbrook to no more than 250 by 1981 although this did not prove feasible.

Although the parties ended up in Court many more times in disputes over the ongoing implementation of the Consent Decree, it was, in a sense, fully implemented in 1987, when the Willowbrook State School and Hospital officially closed.

What Happened Next?

The political reaction to this case led to the enactment of legislation such as:

The Developmental Disabilities Assistance and Bill of Rights Act and CRIPA were the first federal civil rights laws protecting people with disabilities, leading to the enactment of the Americans with Disabilities Act (ADA).

Willowbrook Resources and References

Videos and Multimedia Resources

Articles and Other Secondary Sources

This article was originally printed in the December 2012 issue of The Federal Lawyer and is used with permission.

Opinions

District Court

Initial Injunctive Relief: New York State Association for Retarded Children v. Rockefeller, 357 F. Supp. 752 (1973)

Approval of Consent Decree: New York State Association for Retarded Children v. Carey, 393 F. Supp. 715 (1975)

Consent Decree

US Court of Appeals, Second Circuit decisions concerning implementation of Consent Decree:

References

1. The Minnesota Governor's Council on Developmental Disabilities, The ADA Legacy Project, Willowbrook Leads to New Protections of Rights, Moments in Disability History 9, 2013. Can be found at: ^http://mn.gov/mnddc/ada-legacy/ada-legacy-moment9.html

2. ^New York State Ass'n for Retarded Children, Inc. v. Rockefeller, 357 F. Supp. 752, 764 (1975).

3. ^New York State Association For Retarded Children, Inc., et al., v. Hugh L. Carey,. 393 F. Supp. 715 (1975) at ¶1.

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The Closing of Willowbrook - Disability Justice

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A watershed case in the evolution of the legal rights of people with disabilities to live in dignity arose out of public awareness of the horrific conditions under which children and adults with disabilities were living at the Willowbrook State Developmental Center in New York.

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In the article light is shed on the impact that Willowbrook State School had for the rights of people who are disabled. The Willowbrook Consent judgement that signed over 50 years ago still has a lot of impact today as it helped to lay the foundations of rights as well as advocating for those who have been mistreated because of their disabilities.

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A 1972 exposé by Geraldo Rivera exposed the revolting conditions at the Willowbrook State School, a facility for youth with intellectual disabilities, in Staten Island, New York. The abuse and neglect revealed by this report led to national outcry, successful legal action, and the establishment of a federally mandated network of legal advocacy agencies protecting the rights of persons with disabilities (the Protection & Advocacy Network). 51 years since the exposé's release, Protection & Advocacy (P&A) agencies, like Disability Rights Tennessee (DRT), are continuing this critical work of investigating conditions of abuse and neglect, reporting these findings, and advocating for workable solutions.
History of Willowbrook

Willowbrook State School, the largest institution for the treatment of people with disabilities, was opened in 1948, separating this population from the mainstream of society. ¹ Located in Staten Island, New York the facility was pictured by administration to be a safe institution for residents to receive therapy, opportunities, resources, and proper care. On the contrary, it was understaffed, riddled with disease, and unsafe.

In the mid-1900's, when institutions like Willowbrook were established, there were very little education or therapy opportunities for children with disabilities and families lacked the resources within their communities to care for a child with disabilities. Families were also encouraged by medical professionals to explore institutional placements like Willowbrook. This guidance, coupled with the lack of community support and resources, made Willowbrook seem like the lesser of two evils. Unfortunately, the reality of living (and working) in these facilities during this time was unimaginable. Residents at Willowbrook had a wide range of disabilities, each requiring individualized interventions and specialized care. However, due to severe understaffing and a lack of funding, residents received a "one size fits all" level of care which was later revealed to be widespread neglect and inhumane treatment. Willowbrook residents, which were mostly children, were left unsupervised for hours at a time without support to meet their basic needs, much less access to care that would allow them to reach their full potential.

The conditions at Willowbrook were appalling. Eventually, physicians employed at the institution began to complain. One physician, William Bronston, referred to Willowbrook as little more than a "human warehouse." 2 Willowbrook State School was a public health crisis, fostering abuse and dehumanization of its residents, while actively deceiving the public. Dr. Michael Wilkins shared with reporter Geraldo Rivera that a staggering 100% of residents at Willowbrook contracted hepatitis within six months, ³ and it was so rampant here that researchers took advantage of the situation using residents in medical trials and intentionally exposing them to the deadly virus without their consent. ⁴ The reason many parents were deceived into consent for these medical trials was that participation prioritized a child's acceptance into the institution, and many felt their children needed to be housed and cared for here.

The Exposé of Willowbrook

Willowbrook State School first caught public attention when Senator Robert Kennedy visited the institution in 1965. He found thousands of residents "living in filth and dirt, their clothing and rags, in rooms less comfortable and cheerful than the cages in which we put animals in the zoo." ² This event, along with journal articles by reporter Jane Kurtin, put Willowbrook in the spotlight prompting the New York State Government to develop a five-year plan for improvement. However, State officials were indifferent to how these residents were being treated, due to an individual with disabilities being "devalued by society" at this time. 2 As this was a "total institution," conditions quickly returned to being unsafe.

Following the failed attempts to expose the horrors at this facility by journalists and staff, investigative reporter Geraldo Rivera released the monumental firsthand investigation and exposé Willowbrook: The Last Disgrace in 1972, catching the public's attention internationally. This exposé was made possible by two of Willowbrook's physicians: William Bronston and Michael Wilkins. They reached out to Rivera and brought him onto the grounds to film, allowing him entrance to building six. This moment would become revolutionary for the disability community, the residents in this facility, and Geraldo himself as he captured the abhorrent conditions within.

Rivera's visit to the unit was unannounced, allowing for a true observation of the setting, without the administration's ability to prepare. Rivera recalled the experience of this raw moment, stating that "the doctor warned me it would be bad; it was horrible... how can I tell you about the way it smelled? It smelled of filth, it smelled of disease, and it smelled of death."

Rivera and his team witnessed what they describe to be some of the most unspeakable things they had ever seen in their life. Children were grouped together on the floor, covered in their own feces with one attendant responsible for managing the care of 50+ residents. They were left to sit alone, without social interaction or access to necessary education or treatment. The video documenting this visit shocked the American public, inspiring action and change for the disability community.

Resulting Legislation

Disturbed by the conditions of their children, the parents of Willowbrook residents filed a class action suit alleging that conditions at Willowbrook violated the constitutional rights of residents including the failure to provide habilitation for residents, lack of privacy, and inadequate medical facilities. ² In summary, these residents had a constitutional right to be free from harm within this facility. A U.S. District Court Judge went on to sign the Willowbrook Consent Judgment which set guidelines and requirements for the institution's operation, and established standards of care for all Willowbrook residents at the time of the settlement. This Consent Judgement has had lasting effects that we can see even today, 51 years later.

Political reaction to this case led to the enactment of more legislation such as the Protection and Advocacy (P&A) system in the Developmental Disabilities Assistance and Bill of Rights Act, the Education for all Handicapped Children Act, and the Civil Rights of Institutionalized Persons Act (CIRPA). ² The Developmental Disabilities Assistance and Bill of Rights Act and CIRPA were the first federal civil rights laws that protected people with disabilities, eventually leading to the enactment of the Americans with Disabilities Act (ADA). 2 These Acts paved the way for advocacy today, and their legacies live on even if the laws themselves have changed. They laid a foundation for the needs and rights of individuals with disabilities to be respected and prioritized within care facilities.

Institutions Today

As a result of historic legislation protecting the rights of persons with disabilities, Protection & Advocacy agencies were created to ensure people with disabilities are treated equally. As the Protection & Advocacy (P&A) agency for the state of Tennessee, Disability Rights Tennessee works daily to protect and expand the rights for people with disabilities across the state. Through individual and systemic advocacy, DRT ensures Tennesseans with disabilities are free from harm, have access to appropriate treatment, are empowered, and are included in their community. Although the respect for the rights of all persons has made advancements, there is still a critical need for protection and advocacy. Willowbrook: The Last Disgrace set a foundation for agencies like DRT to be present within facilities, monitoring and advocating for those within.

Last year DRT released two reports on this topic after observing facilities in Tennessee under the supervision of the Department of Children's Services (DCS). These reports have demanded public attention and served as a catalyst for change, just as Rivera's Willowbrook exposé did 51 years ago. In April 2022, Disability Rights Tennessee (DRT) released a report with Youth Law Center (YLC) titled Designed to Fail. After receiving numerous reports of educational neglect and the use of aversive behavior modifications like solitary confinement and restraint, DRT conducted an 18-month investigation into Wilder Youth Development Center, a facility run by the Tennessee Department of Children's Services in West Tennessee. The release of this report in early 2022 was a catalyst for significant changes within the facility and prompted the creation of a legislative and oversight committee for TN's Juvenile Justice practices. Read this report or the executive summary here. In December, DRT and YLC released another report on DCS, Families not Facilities. This report includes additional findings and focuses on a series of recommendations, solutions and steps that need to be taken to improve the situation for children, families and youth trapped in the systems of DCS and the greater youth justice system. Read this report here.

Willowbrook: The Last Disgrace was the stimulus for lasting change in the disability rights world. The bravery of those advocating for its residents resulted in lasting change, still seen today. Although we have made a lot of progress in recognizing the rights of individuals with disabilities, issues are still present. Just as an example, isolation and restraints were improperly used in the mid 1900's and are still used in this manner today. The work done by P&A agencies nationally is important, as most people will have or know someone with a disability. Disability Rights Tennessee is proud to be a Protection & Advocacy agency in a network established by groundbreaking legislation resulting from the Willowbrook exposé. If you or someone you know is experiencing abuse or neglect in any facility, contact DRT at 800-342-1660 or GetHelp@DisabilityRightsTN.org.
Resources

1. https://www.csi.cuny.edu/about-csi/president-leadership/administration/office-vp-economic-development-continuing-studies-and-government-relations/reporting-units-and-initiatives/willowbrook-mile/about

2. https://disabilityjustice.org/the-closing-of-willowbrook

3. https://mn.gov/mnddc/parallels/five/5f/willowbrook.html#:~:text=100%25%20of%20patients%20at%20Willowbrook,Who's%20in%20charge%20here%2C%20Jerry%3F

4. https://bioethicsresearch.org/resources/case-studies/hepatitis-studies-at-the-willowbrook-state-school-for-children/#:~:text=Case%3A%20Hepatitis%20studies%20were%20conducted,that%20children%20would%20contract%20Hepatitis.

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Willowbrook 51 Years Later: A look at history and modern advocacy - Disability Rights

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A 1972 exposé by Geraldo Rivera exposed the revolting conditions at the Willowbrook State School, a facility for youth with intellectual disabilities, in Staten Island, New York. The abuse and neglect revealed by this report led to national outcry, successful legal action, and the establishment of a federally mandated network of legal advocacy agencies protecting the rights of persons with disabilities (the Protection & Advocacy Network).

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People With Disabilities , Willowbrook, and Trauma

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People With Disabilities , Willowbrook, and Trauma

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This small passage highlights how in the past people with disabilities were often put away, not cared for properly, and even ignored by society; so when Willowbrook opened it is was a monumental moment for parents who thought that their child would finally get the right care. However behind closed doors residents were abused and neglected and although horrible things happened within the walls good things prevailed from it. Acts for protection of those individuals who are developmentally disabled were created and these are still prevalent in schools today.

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Abuse and trauma among people with disabilities is something that I have deal with for seven years I have been in the Human Services field. People with all types of disabilities are considered a vulnerable population, especially those who have limited intellectual capacity. History is wrought with stories of abuses against individuals who have intellectual and developmental disabilities. Thankfully, there are now laws and agencies in place to offer protection from abuse and neglect. However, the trauma of the past is still apparent in many of the individuals who have survived.

Prior to about 1800, people with disabilities were seen as problematic. Individuals were cast away from their families, locked away in prisons or sanitariums, or completely ignored by general society because of their differences. It was not until the 19 th century that disabilities began to be studied and people began to take notice of the issues surrounding the treatment of the disabled. Institutionalism became increasingly popular and remained so until the 1970s. Willowbrook State School on Staten Island was one of these institutions that housed developmentally disabled children and became one of the major reasons for the institutionalization overhaul in the United States. Geraldo Rivera headed an exposé into the horrific living conditions of the 5000 children in Willowbrook (Office for People With Developmental Disabilities, n.d.). The severity of abuse and neglect in the institution was so awful that it prompted investigations into other institutions. The disabled children were kept in cribs constantly or housed in a single open area with no privacy. They were naked and sitting in their own excrement. To make matters worse, they were the subjects of state-sanctioned experiments that included feeding the children live hepatitis viruses. The effects of the abusive and neglectful treatment made already vulnerable and fragile individuals regress even farther into their disabilities, while others did not survive their time at the school. Those exposed to the despicable living conditions have had to overcome speech and language issues, behavioral issues, as well as serious medical implications from contracting hepatitis (Geraldo Rivera, 2017). The exposé by Rivera was only done in 1972, and many of the individuals from Willowbrook are still alive and living throughout New York State and other parts of the country (Office for People With Developmental Disabilities, n.d.).

One of the best achievements that came out of the tragedy of the institutions was the enactment of legislation to protect individuals with developmental and intellectual disabilities. In particular, the Developmental Disabilities Act of 1963, The Developmental Disabilities Assistance and Bill of Rights Act of 1975, and the Civil Rights of the Institutionalized Persons Act of 1980 (The ARC, n.d.). One of the most recent protections put into place in New York State was the establishment of the NYS Justice Center in 2012. The NYJS is designed "to protect the health, safety, and welfare of vulnerable New Yorkers." (The New York State Senate, 2015). Special accommodations are also made for the survivors of Willowbrook, including intensive case management. This case management has much stricter guidelines for monitoring and protecting the Willowbrook individuals than non-Willowbrook. These guidelines were put into place to help ease some of the effects of the trauma that the individuals were exposed to.

Protecting the rights and lives of individuals with intellectual and developmental disabilities is an ongoing process and the programs that serve these individuals are ever-changing to reduce the risk of abuse and neglect. Trauma can impact those with disabilities in different ways than people without disabilities and it is important to ensure that they have the necessary supports to both address trauma and to prevent it from happening as much as possible.

Office for People With Developmental Disabilities. (n.d.). Retrieved April 22, 2017, from https://opwdd.ny.gov/

Geraldo Rivera. (2017), From Geraldo's book, Willowbrook: A Report On How It Is And Why It Doesn't Have To Be That Way. Retrieved April 22, 2017, from http://geraldo.com/folio/willowbrook

The ARC. (n.d.). Public Policy and Legal Advocacy. Retrieved April 23, 2017, from http://www.thearc.org/what-we-do/public-policy/know-your-rights/federal-laws

The New York State Senate. (2015, October 05). Senate Passes Legislation to Protect People With Special Needs and Disabilities From Abuse and Neglect. Retrieved April 24, 2017, from https://www.nysenate.gov/newsroom/press-releases/senate-passes-legislation-protect-people-special-needs-and-disabilities
View all posts

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People With Disabilities, Willowbrook, and Trauma

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Abuse and trauma among people with disabilities is something that I have deal with for seven years I have been in the Human Services field. People with all types of disabilities are considered a vulnerable population, especially those who have limited intellectual capacity.

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References

About | Willowbrook mile | College of Staten Island website. (n.d.). College of Staten Island (CSI) CUNY. https://www.csi.cuny.edu/about-csi/president-leadership/administration/office-vp-economic-development-and-community-partnerships/reporting-units-and-initiatives/willowbrook-mile/about

The Aggie Transcript. (2023, May 24). Willowbrook’s hepatitis study. https://aggietranscript.ucdavis.edu/willowbrooks-hepatitis-study/

Cook, M. (2017, April 24). People with disabilities, Willowbrook, and trauma. Boston University. https://sites.bu.edu/daniellerousseau/2017/04/24/people-with-disabilities-willowbrook-and-trauma/

Departments of Pediatrics, New York University, S. K. (1986, January). The Willowbrook Hepatitis Studies Revisited: Ethical Aspects. Grand Valley State University. https://www.gvsu.edu/cms4/asset/F51281F0-00AF-E25A-5BF632E8D4A243C7/willowbrook_hepatitis_studies.pdf

Disability Justice. (2023, April 20). The closing of Willowbrook. https://disabilityjustice.org/the-closing-of-willowbrook/#:~:text=Following%20the%20Rivera%20expos%C3%A9%2C%20parents,constitutional%20rights%20of%20the%20residents

Disability Rights South Carolina. (2022, February 24). Www.disabilityrightssc.org. www.disabilityrightssc.org | 520: Web server is returning an unknown error. https://www.disabilityrightssc.org/news/50th-anniversary-of-the-willowbrook-expose/

Florida Self Advocate Network. (2018, March 20). Willowbrook and the lessons we must never forget. flsand. https://www.flsand.org/single-post/2018/03/20/willowbrook-and-the-lessons-we-must-never-forget

Klacik, J. (2023, January 6). Willowbrook 51 years later: A look at history and modern advocacy. Disability Rights. https://www.disabilityrightstn.org/willowbrook-51-years-later-a-look-at-history-and-modern-advocacy/#:~:text=Political%20reaction%20to%20this%20case,Institutionalized%20Persons%20Act%20(CIRPA)

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Willowbrook State School was an institution that housed residents that had developmental disabilities, it was opened in a time when more research and knowledge was being developed about those who are disabled so it was seen as a stepping stone in the right direction. On the surface it seemed like a good place to parents who were sending their children there to get better care as well as to become educated. However all of this was actually the opposite of what was really going on within Willowbrook.

Residences were often neglected, left sitting in their urine and feces, abused, and lived in unhygienic conditions. Lack of funding for the institution left students outnumbering the staff and there were usually more than 50 people huddled in one room together. The neglect was not even the worst that happened in this institution. Dr Saul Krugman constructed an experiment using residences from Willowbrook in order to find a treatment/ vaccine for hepatitis. To conduct this experiment he infected peoples foods with feces from people who had hepatitis, and tried to justify this study by stating that they were in good hands and this was the best care they will receive.

After being exposed by Geraldo Rivera parents were livid and filed a lawsuit against Willowbrook State School. This brought the Willowbrook Consent Judgement which set forth requirements for operating the institution and made new standards for the care of students. The political reaction to this case led to the enactment of other acts such as The Education for All Handicapped Children Act and the Developmental Disabilities Assistance and Bill of Rights Act. Though what happened at Willowbrook was terrible, it helped to pave the way for those who are disabled. In schools today we have rights for students who have physical or developmental disabilities such as IEP, 504 plans, student aids and so much more; without these acts and without Willowbrook equal education might not be guaranteed for students who are disabled.