Willowbrook State School. Will the pendulum ever swing back?

This morning I happened to see an article in the Long Island Press about the demolition of the buildings at the King's Park Psychiatric Hospital Campus.  Having grown up a few blocks away from what once was the Edgewood and Pilgrim State Psychiatric Hospital grounds I always wondered what lead to these sprawling campuses being abandoned and shuttered in the eighties and nineties.  Was it a case of modern medicine becoming so effective at treating many of the disorders that the residents suffered from that large scale institution had become a thing of the past?  Had the cost to maintain these facilities gotten so out of hand that the state couldn't afford to run them anymore? Had mainstreaming and community based care supplanted the need?

In reality it was all of these reasons and none of these reasons.  Mass institutionalization may have been the cutting edge of medical science when these facilities were constructed, but without adequate staff, budget or treatments available many of them turned into warehouses. Recently I watched a documentary entitled "Unforgotten:  25 years after Willowbrook."

The Willowbrook State School was a facility located in Staten Island.  Opened in 1947 it was created to house, educate and treat children who were mentally retarded or developmentally disabled.  As the years passed it devolved and by 1965, Willowbrook housed over 6,000 mentally disabled children, despite having a maximum capacity of 4,000. Senator Robert Kennedy toured the institution in 1965 and proclaimed that individuals in the overcrowded facility were "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" and offered a series of recommendations for improving conditions. "Excerpts From Statement by Kennedy", The New York Times, September 10, 1965. The school gained a reputation as a warehouse for New York City's mentally disabled children, many of whom were presumably abandoned there by their families, foster care agencies or other systems designed to care for them.

In 1972 a doctor who worked at the school contacted CBS investigative reporter Geraldo Rivera.  Rivera's expose entitled Willowbrook: The Last Great Disgrace uncovering a host of deplorable conditions, including overcrowding, inadequate sanitary facilities, and physical and sexual abuse of residents by members of the school's staff.  The public outcry was huge and steps were taken to reform the school, with it eventually being closed down in 1987.  The residents there had been transferred out to group homes or other less restrictive environments.

Following Willowbrook the pendulum shifted and the focus became one of mainstreaming the developmentally disabled.  No one can argue with the positive results this has had, both for the developmentally disabled population and our society in general.

However, we have to keep in mind that without constant attention any system can break down.  I have yet to hear a colleague who deals with mental hygiene law ever say, "You know what there are too many of?  Group homes.  There are just too many beds and too many choices." There aren't enough beds.  There are not enough choices.  We also have to keep in mind that in the rush to close budget gaps and deficits, some programs are more vulnerable than others.  When it comes to programs for vulnerable populations, trimming the fat off the budget is never kind. 

For the time being I think the memory of Willowbrook and the other schools like it is too fresh in the minds of mental hygiene practitioners and the family members of the developmentally disabled to ever let mass institutionalization come to the table as an option in the war against the deficit.  But a few generations removed from now will a spreadsheet presented at a budget meeting somewhere show that one large facility is more cost effective than four dozen smaller ones?  And if so, will someone at that meeting remember Willowbrook.