28 The QUEE NS Courier • june 23, 2016 for breaking news visit www.qns.com FAMILIES IN CRISIS By Charlie Perry cperry@qns.com/@QueensCourier Decades after the infamous Willowbrook State School closed on Staten Island, there is still much work to be done for people with developmental disabilities and autism. Our publications will be running a series of articles in the coming weeks featuring stories about families with children with developmental disabilities and autism. They appear in our print publications, as well as online at QNS.com and Brooklyn Reporter.com. A fountain spewing thick, he was appalled by the unsanitary white water 6 feet into the and inhumane conditions air greets visitors as they he witnessed, calling the approach the College of school a “snake pit.” People Staten Island. Guests walk were naked with vomit and past the fountain down a red feces caked on their bodies. and brown brick path lined Residents were malnourished with old-fashioned street and drenched in urine. lamps resembling a roaring The institution had been 1920s era. Cherry and pine forced to downsize its staff trees take root on either side due to budget cuts There were of the brick walkway, inviting two or three workers caring a walker’s gaze to rich fields for 70 people at a time. of green filled with colorful Ironically, under Governor flowers and foliage. At first Nelson Rockefeller’s budget glance it may be difficult to cuts, the people living in imagine the horrors that once Willowbrook were once again took place on this property. affected in the early 1970s. In 1965, Willowbrook In 1972, a 29-year-old housed more than 6,000 people investigative reporter named in a school built for no more Geraldo Rivera took his camera than 4,000. It was the largest through the back door of state-run institution for people Willowbrook to expose the with developmental disabilities atrocities taking place at the in the United States. school after the budget cuts. When Robert F. Kennedy With picketing and protests, visited the institution in 1965, the New York Civil Liberties Victoria Schneps (left) picketing at Willowbrook State School in 1972 and a child at one of its wards. Union and the Legal Aid Society offered their services to angry parents who had begun to organize against the school, and a class action lawsuit was filed with the United States New York District Court on April 10, 1973, on behalf of the 5,000 residents of the Willowbrook State School. The case was won. In April of 1975, Judge Orin Judd signed The Willowbrook Consent Decree. The legislation called for the relocation of Willowbrook State School residents to residential homes that could better serve them. Progress has been made since Willowbrook was closed but there are still problems to address. Federal and state support for people with developmental disabilities has once again put them in situations filled with struggles for services. A group of concerned parents of children with autism and developmental disabilities met at the Life’s WORC Family Center for Autism in Garden City Long Island. Coffee cups in hand, they sat in red felt chairs around a foldout table, discussing the problems that affect their families today. Our series will tell their stories. We begin with the lawyer Murray Schneps, whose new book “I See Your Face Before Me; A Father’s Promise,” tells the story. His article is featured below. BE A PART OF THE SOLUTION By Murray B. Schneps More than 40 years ago, the Federal Court found the 5,000-bed institution known as “Willowbrook” to be wholly inadequate at its purported purpose of caring for our disabled citizens. It was a place of almost unimaginable neglect, misery and abuse. The resulting Willowbrook Consent Judgment mandated the development of a Community Placement Plan. The CPP required appropriate small community residential homes and services with adequately trained direct care and support staff providing appropriate medical, dental, habilitation, treatment, training, educational and recreational services. The CPP also mandated full and complete access to and enjoyment of the community. If all such services were not rendered, it did not qualify as a community placement. The term “placement” was a term of art applying only to a valid community home bed. The term “placement” would not be applied to an institution or institutional bed. Recently, I learned that the United States Department of Justice sued the state of North Dakota for the use of “sterile, highly restrictive group homes” and questioned the state of Florida having “placed those children in nursing homes.” The developmentally disabled are currently being forced to reside in inappropriate group homes and nursing homes. The source of the report is an article written by Matt Apuzzo of The New York Times on May 2, 2016, entitled “South Dakota Wrongly Puts Thousands in Nursing Homes, Government Says.” The report and the article stung me. Such actions are being openly and shamelessly instituted in many states, including here in New York. More importantly, few people recognize that such purported placements are essentially a move backward into the deprivation and darkness of institutions. Moving the developmentally disabled into nursing homes or sterile, restrictive group homes is a blatant denial of services. In addition, the residential and supportive services to all developmentally disabled is being diminished, albeit subtly. Only those who can work and earn a living will be provided with placements in the community. The day of providing appropriate services to all of the developmentally disabled (whether characterized as mildly, moderately, severely or profoundly disabled) is all but over. Those who are less able to earn a living or less able to be independent will suffer the most. Those who cannot demonstrate calculable improvement will receive fewer and fewer services. Why waste money for those who cannot measure up!! As services are cut, many residential facilities will become institutions regardless of size. They may not look like Willowbrook but will, nonetheless, be institutions. The same isolation, neglect and idleness will expand. As time goes by and parents or family members are no longer able to maintain their loved ones at home, what will occur? No available small community residential homes will exist, as none are being developed. Simply, the state will locate a bed somewhere, anywhere — most likely in an underutilized or closed nursing home or hospital. Politicians do not care about our developmentally disabled citizens and will not advance this cause without a concerted and consistent push from us. It is time for all of us to give voice to our concerns and demand appropriate services and residences for our developmentally disabled brethren. A steel fist under a velvet glove is required. The most direct avenue is to vote for a liberal president who will nominate a liberal, or at least moderate, Supreme Court Justice. That is something that each of us can do to help insure that the care and services provided to our developmentally disabled is not thrown back to the horror of places like Willowbrook. Without a forward-thinking U.S. Supreme Court, any legal action to insure services and residences for our developmentally disabled will fail. Murray B. Schneps is a longstanding advocate for the developmentally disabled and the author of a book “I See Your Face Before Me.” Visit his website (www.murrayschneps.com) and his Facebook pages.
QC06232016
To see the actual publication please follow the link above