Willowbrook in the Early 1970s
Journalist Geraldo Rivera uncovered the disgrace at Willowbrook. He produced a documentary six years after Senator Robert Kennedy made the above statement. The statement said that the overhauling was long overdue, but it took many years before changes happened.
Geraldo Rivera gained access to Willowbrook State School with the help of doctors who were appalled by the conditions at the institution.[i]He sneaked in unannounced and documented the horrors that took place there. The public can still view this documentary on the internet.[ii]
At the time of Rivera’s documentary, cruel budget cuts changed the ratio of attendants at Willowbrook from 4 residents to 1 attendant to 30 or 40 residents to 1 attendant. Residents sat all day doing nothing and did not have any opportunities for training. They were unattended and left to their own devices. They had nobody to talk to and no one talked to them. They contracted diseases such as hepatitis, parasites, and pneumonia. They sat on the floor naked, filthy, smearing feces, and making moaning sounds. They needed to be fed quickly because of the lack of staff. Attendants slopped globs of mush into their mouths. This put the residents at risk for aspiration pneumonia. It was a disgrace. [iii]
Quote from Senator Robert Kennedy on State Institutions
I visited the state institutions for the mentally retarded and I think particularly at Willowbrook, we have a situation that borders on a snake pit…the children live in filth. Many of our fellow citizens are suffering tremendously because of lack of attention, lack of imagination, lack of adequate manpower. There’s very little future for these children and for those that live in these institutions. Both need tremendous overhauling…it’s long overdue that something be done about it.
-Senator Robert Kennedy, 1965
No Proof Conditions Were Caused by Congregate Care Model
This is the way the public views institutional care. However, there was never any proof that it was the congregate care that made Willowbook and other institutions so bad. It’s more likely that budget cuts, the lack of trained staff, and the horrific conditions were the culprits.
Improvements and History of Excellence in Congregate Care
Over the years, various lawsuits addressed the poor quality of care in facilities serving individuals with disabilities, which led to court orders requiring states to improve conditions. These legal actions raised awareness and enforced the need for better standards.
The establishment of intermediate care facilities for individuals with intellectual disabilities (ICF/IID) regulations for these facilities also significantly upgraded care quality. These facilities are required to meet specific federal standards, such as providing “active treatment” and ensuring compliance with health and safety requirements. [i] This regulatory framework helped standardize care and ensure consistent quality across facilities
In the early 1900s, the Wrentham State School in Wrentham, Massachusetts (Currently called the Wrentham Developmental Center) was a good place. Under Dr. George Wallace, the facility was a place of learning, bustling with activities and humane care. Unfortunately, over the years, care eroded.[i]
Ricci V. Okin Leads to Consent Decree Appointing Judge Joseph L. Tauro in Charge of the IDD System
In Massachusetts in the 1970s, Benjamin Ricci fought for better conditions in the institutions. He detailed his advocacy efforts in his book, Crimes Against Humanity. [i] He brought state lawmakers to see the Belchertown State School. In one scene in the book, a lawmaker vomited in the parking lot after viewing the conditions there. His lawsuit, Ricci V. Okin, and the ensuing consent decree, was instrumental in improvements made in the system of care for those with IDD in Massachusetts. The Ricci v Okin class action lawsuit in the 1970s and 1980s improved the lives of thousands of people.
Judge Tauro’s Improvements Turns Massachusetts System into a National Model
Following the Ricci lawsuit, U.S. District Court Judge Joseph L. Tauro oversaw the improvement of care for the intellectually and developmentally disabled in Massachusetts from the 1970s until 1993.
Tauro’s work resulted in major capital and staffing improvements to the facilities and a program of community placements. Under Judge Joseph L. Tauro, Massachusetts made significant strides in improving the care for individuals with intellectual and developmental disabilities. His landmark rulings led to substantial improvements in living conditions, staffing, and overall care in state institutions. By most accounts, the horrific conditions of past institutional care were dramatically reversed.
[i] Ricci, Benjamin, Crimes Against Humanity, iUniverse, May 5, 2004
[i] Grenon, Ingrid, From One Century to the Next, Nova Publishers, 2014
[i] https://www.cms.gov/medicare/health-safety-standards/certification-compliance/intermediate-care-facilities-individuals-intellectual-disabilities-icfs/iid?form=MG0AV3
[i] Revisiting Willowbrook 50 years later with reporter Geraldo Rivera, Eyewitness News 7, April 1, 2022
[ii] Willowbrook: The Last Great Disgrace – Geraldo Rivera Documentary (1972), Internet Archive, February 9, 2022
[iii] Rivera, Geraldo, Willowbrook: The Last Disgrace, 1972