Just to See What is Going On - #3

The proper and logical conclusion is that the existence of an active independent court appointed panel (like the Willowbrook Review Panel) is required. With an independent panel of experts with authority to act resulted in having excellent group homes, available services and programs and, even, improved conditions at the institutions were achieved. From the termination of the Review Panel in the beginning of 1980 deterioration almost immediately took hold. As Chris Hansen, Esq. told the New York Times on October 31, 1981, “Two years ago, I couldn’t walk into a ward and find four or five patients stark naked. 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.”

The Chicago Tribune reported that the State of Illinois failed to fully disclose the behavioral histories to the group home executives. Those are the people who had the obligation to evaluate and provide appropriate services and programs to the developmentally disabled individuals under their care. However, unfathomably, the State withheld critically basic information required to provide appropriate services.

The State’s Human Services officials cut budgets that eroded quality of care decreasing residents’ independence. Human Services officials used the tactic of obscuring problems so no one could know that the services were inadequate in these so-called group homes. The name does not define a group home or residence or institution. It is what occurs and does not occur that defines a facility.

Illinois required Group home executives who wanted to provide services under the closure plans and participate in the “auction” had to sign a written pledge of loyalty extracting a vow “not to do anything to inhibit, diminish, or underline” the Illinois State’s closure plans. Further, the group home executives were mandated to sign the pledge lest they be foreclosed from participating in the auction and receiving no referrals of developmental center residents to fill empty beds. Under that threat, 67 group home operators signed the one-page pledge.

Illinois’ top officials and its Department of Human Services, as a part of their plan, promised and represented that the services to the residents residing in Jackson Developmental Center would be excellent and terrific in the new group homes. This representation was false, as never meaningful steps were implemented to enforce such promises and representatives. The entire plan from begin to end appeared to be a scheme to cut funds for the support and services for the developmentally disabled in favor of other services and other citizens. It is apparent to me that the residents moved from the Jackson institution to the alleged group homes did not improved their lives. They were moved from one institution to another.

Due to the misrepresentations, failures and refusals on the part of the State of Illinois and its Health Services officials to provide adequate and appropriate services to the Jackson Developmental Center transferees, the parents whose children reside at the Murray Developmental Center dug into their heels and participated in a powerful “SAVE MURRAY” strategy halting the State’s plan not against the utilization of group homes but because the State refused to distinguish the different needs required and tried “to fit everyone into the same–size shoe.”

A conflict developed between the parents at Murray and the Arc of Illinois. The parents wanted Murray to remain opened and Arc wanted institutions (ancient relics of the past) to be closed and residents should reside in appropriate group homes we all necessary and appropriate services

It is remarkable how the State twisted its failures away from the true issue into a battle between the parents and Arc, people who should be on the same side.

The utilization of these recent horrendous occurrences is to hope that we will realize that staunch similarities abound. Today, I am viewing a landscape as devastating and similar as the one I saw and lived through and so many died.

In the 1970s, the best interests of the developmentally disabled were promised appropriate and necessary services. So too, are they being promised such services today. But the States have failed and refused to deliver. Frankly, other than parents, family members, advocates, some citizens and those in the field, it does not seem to me that those in power do nor care about our children. Hide them somewhere so that cannot be seen or bother anyone.

In the 1970s, the abuse and neglect, flawed investigations and oversight and a rush to avoid litigation people we dumped out of institutions for the developmentally disabled and the mentally ill. New York State dumped many helpless, penniless and unassisted or unserved mentally ill into New York City in an effort to create a backlash to prevent the opening of group homes in the Willowbrook case.

In the 1970s, I am not certain that a lack of funding was the real problem. It was always my belief that only after the funds were appropriately used for the best interests of the clients could we know. However, the States were committed to systems of institutionalization that was two to four times more than the cost for community based group homes with all appropriate and necessary services. Why?

Federal and State Departments knew and know the truth. Each of those Departments was or should have been knowledgeable experts. Why would anyone require disabled persons to live in the horrendous vileness of institutions without services or the opportunity for meaningful lives, especially when the those individuals could live in meaningful lives in a community home at a far less cost than in any institution.

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