- Last month I was asked to accompany parents and advocates of people with developmental disabilities to Albany to meet with various lawmakers to discuss the pending budget cuts. I was surprised when sitting with a legislative aide that she had never heard of Willowbrook and what happened there almost 40 years ago.
Granted, she was not old enough to remember seeing a 20-something Geraldo Rivera
sneak into the hospital with cameras in tow, but, especially considering her position, I thought she should know. I explained to her that many children and adults who now reside in nice, clean homes within our communities do so, in part, because of Rivera's exposure of the atrocities at Willowbrook. Even mention of the name of that infamous place evokes fear and terror for families whose loved ones once lived there.
Willowbrook State School first opened its doors to mentally retarded (now referred to as developmentally disabled) people in 1947 with the intent on caring for 2,000 children and adults. By the time Rivera entered the facility, the number had swelled to more than 6,000.
Overcrowding, combined with an undertrained and uncaring staff, caused Robert Kennedy
to refer to Willowbrook as "a snake pit." Typically 70 to 80 people were basically warehoused in large, dimly-lit rooms, naked and sitting in their own urine and feces. Some were even placed in straitjackets. One can only imagine the "overwhelming stench" that Rivera spoke about during his visit.
Willowbrook epitomized everything that was wrong with the "system." New York State had allowed its most vulnerable citizens to be abused and neglected for many years but was now forced to right its many wrongs. The result was the Willowbrook Consent Decree.
The Willowbrook Consent Decree was enacted in 1975 and called for de-institutionalization, availability of community-based services, upgraded state services, daily programming activities, appropriate staffing ratios, and a safe environment. In essence, it paved the way for people with developmental disabilities to have a happy and meaningful life in a place where people cared for them and loved them.
It was the Willowbrook Consent Decree that allowed private not-for-profit organizations to develop community-based group homes and day programs designed to provide a home-like environment and meaningful work opportunities within the community. These agencies are dedicated to helping children and adults with developmental disabilities to realize their full potential as human beings and as contributing members of society.
Walter W. Stockton
, CEO of the Independent Group Home Living Program (IGHL
), a not-for-profit organization based in Manorville that operates over 85 homes and programs on eastern Long Island, remembers the effect that the fulfillment of the Willowbrook Consent Decree had on the lives of the first eight people who were welcomed to IGHL's first group home in Mount Sinai, "We found that they thrived in their new home, not because of what we were doing, but because of the potential that they had within themselves."
Today many of those who survived the horrors of Willowbrook live in places where they are loved and cared for and are allowed to enjoy life and experience everything the world has to offer. Today they are people again.