Just to See What is Going On - #1

In a week prior to the recent Presidential Election I began feeling upset and fearful. My concerns focused on the continuing deterioration of services and rights of the developmentally disabled throughout the United States. I am no longer a warrior (too old, you know) but hoped that I could be an older statesman offering advice, experience and encouragement. Within a few weeks following the election I understand that the opposition is not sleeping. The opposition is moving forward to implement its view. After some quiet reflection I feel that I share some experiences, thoughts, ideas and opinions I have.

My writings and communications are intended to be shared with parents, family members, advocates, citizens and those in the field of developmental disabilities, in the hope that will become actively in dealing with the truth that conditions, services and programs (residential and programmatic) continues to deteriorate without abatement. Parents have always led the way with their refusal to lower the expectations for their children and fight relentlessly to assure that their children will be provide with all necessary and appropriate services.

I recently read an article written by reporters Michael J. Berens and Patricia Callahan of the Chicago Tribune newspaper dated December 29, 2016, the final of a three part expose’ regarding the efforts by the Governor during a pending class action directed by the Court to remove developmentally disabled individuals from long standing institutions and place them into appropriate small community residences (group homes) with all of the services, programs and staff required by them.

I must divert. After so many years of being in the front lines and seeing so much, it is difficult to remember everything but in time so many of the memories re-appear. An article written by Peter Kihss of the New York Times published October 13, 1981, a period of almost two years following the denial of funding by the Legislature of the State of New York for the Willowbrook Review Panel, the State was seeking a new deal with all of the attorneys for the different Plaintiffs. They submitted a proposed stipulation approved by all of the attorneys other than my friend Michael S. Lottman, Esq. and myself. At that time, Mike and I were representing most of all of the named individual plaintiffs. The stipulation sought to alter the obligation of the State to place institutionalized Willowbrook class members directly into appropriate small community residences (group homes) with all of the services, programs and staff required by them, by permitting the State to utilize interim 24 bed size “transitional” facilities. Clearly, placement would be delayed extensively, even permanently, sentencing most of those people to extensive or lifelong institutionalization. I refused to agree and the parents unanimously supported my position rejecting the stipulation. In October 1981, 1,330 people still resided in Willowbrook of the original 5,338 at the time of the filing of the class action. It is my opinion that Willowbrook State School may still be open but for the fact that the stipulation was rejected. Willowbrook was closed in the September 1986.

Reading the Chicago Tribune investigative article my long standing opinion was confirmed that when it comes to the developmentally disabled, be it New York or Illinois or any other State of the Union, that each State seems to make separate determinations that are like cookie cutters. Invariably those determinations are not in the best interests of those to whom they are obligated to protect.

The series of three investigative articles referred to as (1) Illinois hides abuse and neglect of adults with disabilities; (2) Flawed investigations ignore victims of neglect; and, (3) In the rush to close institutions, Illinois glossed over serious problems in group homes. I recommend that you read all of the series at (1) www.chicagotribune.com/news/watchdog/ct-group-home-investigations-cila-met-20161117-htmlstory.html ; (2) www.chicagotribune.com/news/watchdog/ct-illinois-group-homes-cila-investigations- 20161120-htmlstory.html ; and, (3) www.chicagotribune.com/news/watchdog/grouphomes/ct-group-home-investigations-cila-met-20161229-htmlstory.html .

In reading the final article regarding supposed efforts to close institutions for the developmentally disabled and place them into small community residential homes, in January 2017, I was immediately transported to the early 1970s where people in the field who knew better and should have known better, failed and refused to make life better for those they were obligated to care for and protect. In fact, they made things worse at an extraordinary cost of money and humanity. In the 1970s institutionalization of the developmentally disabled was the most expensive and worst manner to present human services. To this day, institutionalization remains the most expensive, far less expensive than excellent group homes. Yes, it is true that group homes can be unacceptable but an important difference between a group home and an institution is that a group home can be improved and corrected and be an excellent home but an institution can never be excellent or good or most importantly, appropriate. Correcting problems in institutions are all but impossible. All people must live in appropriate loving homes. It is a commitment between the United States and our residents and must be enforced and assured.

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Just to See What is Going On - #2, will be published next week.

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