Just to See What is Going On - #2

When Illinois determined to close some of its state institutions in April 2012, relocating adults with disabilities into group homes in the community, group home operators were hastily gathered at the Jacksonville Developmental Center.[1] Due to the existence of a class action pending against the State it felt pressured to empty JDC as soon as possible. The meeting was for the purpose of holding a hand-raising auction for the selection of institutionalized residents for their group homes relying upon “read aloud medical histories of residents” by a state official. The group home operators were required to select their picks based upon flimsy and inaccurate information by raising their hands. Now what could have gone wrong? Actually, most everything did go wrong and injured the clients.

Although the State of Illinois promised the “residents that group homes offered a new beginning – one that would bring them more independence, safe and compassionate care, even a private bedroom, those promises were never fulfilled and no effort was made to fulfill them. Rather, the State of Illinois obscured evidence of its failed promises. Many group homes were underfunded, understaffed and dangerously unprepared for new arrivals having complex needs. The money from the institutions was not shifted to the group home so-called program. In other words, institutions were closed; the developmentally disabled were transferred into so-called group homes without adequate funding for staff, food and other services; and, Illinois saved money on the backs of the developmentally disabled. Group homes that were to house four residents, housed as many as eight residents in an effort to secure funding. Numerous incidents occurred and by reading the articles above you can see many of the horrific details.

Since 1969, as a young man, husband, father, lawyer and advocate, I faced continuing resistance from the State of New York. The State was willing to spend large sums of money to maintain a failing, deteriorating inhumane and inhuman institutional system spending approximately $125,000.00 per person. At that time the cost for a group home was less than $60,000.00 per person. There never has been and there is no economy of size. INSTITUTIONS COST MUCH MORE MONEY THAN DO GROUP HOMES.

It is also important to know and understand that a residential facility of 5,300 beds like Willowbrook was, or 2,800 beds like the Suffolk Developmental Center on Long Island, NY, or 500 beds, or 50 beds, or 10 beds, or even one, two or three bed homes in a castle in a fancy neighborhood, can be an institution. The issues of isolation, boredom and monotony must be taken into account. Merely because a residential facility appears to be or is called a group home, does not change the reality. Criteria must be established and defined for any community residential residence or group home as certified as being acceptable, licensed and utilized.

The Willowbrook Consent Judgment required the State of New York to place those who resided in that institution into certifiable group homes. The State was obligated to place (not merely transfer) people into smaller residential facilities but such placement had to have adequate funding, sufficient number of trained staff and all other services including day programs, schools, medical and dentist services, opportunities to participate among its neighbors, therapies and more. All that a person needs and requires must be provided and available.

From the end of 1975 until the termination of the Willowbrook Review Panel (a Panel of independent experts submitted by the attorneys for the plaintiffs and the defendants and appointed by the Federal Court) when, at the beginning of 1980, the Legislature defunded the Panel, in spite of the fact that the group homes certifiable by the Panel created many very high level placements.

With independent committed supervision, an excellent system of small community residential homes with all services and requirements appropriate for each individual, all of the developmentally disabled may be provided a very high level life and living at a much less cost. It was done and it was a win-win.

In early 1980, the New York State Legislature terminated funds for the Willowbrook Review Panel. By the early of 1981 the State negotiated a stipulation with almost all the attorneys representing plaintiffs permitting amending the Willowbrook Consent Judgment permitting the increase in the size of residential facilities to 24 beds. The original maximum was ten beds. I originally objected to the stipulation and at two separate meetings voting on the issue, 100% of the parents (all entitled to vote) supported my position.

By the end of 1981 all attorneys for the plaintiffs were in Court seeking an order holding the State officials in Contempt of Court due to the horrendous conditions existed in Willowbrook and its more than 1,300 residents.

Mr. Peter Kihss a writer of the New York Times reported on October 31, 1981, about the hearing regarding that conditions at Willowbrook were seriously deteriorating. Mr. Kihss reported that Chris Hansen, Esq., representing many of the NYCLU plaintiffs, informed the Court that it was “ ‘a unanimous view that conditions at Willowbrook have deteriorated badly’ in the two years since a court-ordered review panel stopped monitoring the situation after the State Legislation refused to finance it. . . . ‘Two years ago, I couldn’t walk into a ward and find four or five patients stark naked,’ Mr. Hansen said. ‘Today I can. Two years ago there was no feces or urine on the floor. Today there are. Willowbrook as it is today is an abomination.’ ”

[1] Jacksonville was opened in 1851 by the State of Illinois and was closed in 2012

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Just to See What is Going On - #3, will be published next week.