I would dearly hope to be able to inform you that conditions for the developmentally disabled are improving. The State of New York continues to press for a persistent commitment to an ever-expanding institutional system. In my more than the 40 years I have been in the midst of this struggle. In the years before the execution of the Willowbrook Consent Judgment in early 1975, neither the State's attorneys, outside experts or staff could not stand up to plaintiffs' attorneys (individually or as a group), plaintiffs' experts or parents or staff who were in a desperate place, worked harder and cared and understood the issues. Nonetheless, Class Actions are very difficult in winning as the Governor, the Legislature, the Unions, the Voluntary Agencies, many Direct Care Staff and some parents are opposed to change and are cozy in their little castles. Mostly, many parents are fearful, feel helplessness and over the years they have lost too many expectations for their children. Rather than the priority issue is one of life or death, there seems to be a secondary forgotten issue of services, treatment, training and appropriate community residential homes and group homes.
In addition, it appears to me that in the early 1970s there seemed to exist some less fear. Today, everyone seems to be very fearful. It seems astonishing to me that when the clients are taking a flat out dive in a frighteningly race to the bottom. Sadly, they think that both they and their children will be soaring near upper space. More sadly, they are refusing to see and understand the vicious truth that our children are not anyone’s priority. Why should we be expected to stand by and wait for a miracle that will not arrive unless we demand and seize it? When you are only complaining and expressing hurt and anger and disappoint, you are not being advocates. You must be active aggressive advocates and permit yourself to sit at home and not going to war.
Most everyone is about scared to death both on the side of the parents and the government. I am certain that many people are contemplating the organization and design of new effective litigation. I have always been in favor saying and doing what I said. In fact, I really loved litigation. In the Willowbrook case we had a large advantage but still feared we may lose. A few years later, we won again in the Suffolk Developmental Center case, in spite of the fact that the State’s attorneys learned too much from us demonstrating more skill and effective resistance a few years later and Judge Jack B. Weinstein, the judge overseeing the case felt reluctant to grant relief that upon appeal the conservative majority would render a political decision. The Federal Second Circuit Court (one of the regional appellate courts) in spite of the fact that we knocked the heck out of the State and its army of attorneys at trial and Judge Weinstein was cautious in his decision to minimize the reversal of his decision. Nice try Judge Weinstein but the Second Circuit Court of Appeals, reversed your decision and returned it with some questions to be answered by you, the trial judge. The State opted to refused to continue to wage a trial that made the State looking bad, stupid and mean. Instead the State agreed to sign Judge Weinstein’s detailed decision granting less relief than we felt was entitled based upon the evidence and proof presented, and much less relief than provided under the Willowbrook Consent Judgment.
I still believe that a new class action can be successful and even ultimately settle the underlying differences. For the past almost close to 50 years I have been unable to understand or find any sense, logical or reasonability to satisfy me why the State and others remain committed to maintaining and growing a terrible, inadequate, injurious and ridiculously high-priced institutions. Such facilities should not exist so why would politicians risk much to approve and support unacceptable and identified Sen. Robert Kennedy characterized them as "Snake Pits" in 1965. Frankly, I prefer the characterization of the institutions to be portrayed as "concentration camps" like Auschwitz, Dachau, Bergen-Belsen, Buchenwald, Sachsenhausen, Majdanek et al.
In 1966, the great Dr. Burton Blatt, a professor at Syracuse University, declared that “there is a hell on earth and in America there is a special inferno – the institution.”
Some urge me to retire working as an advocate but such retirement would not convert the special inferno (referred to by Dr. Burton Blatt) into a sweet home in the community. That is my obligation as a human being and as Lara’s father, and I will fight at any level I am capable of performing.
Although, we appear to be opposite to and incompatible with the State, our positions are not really based upon some theoretical or philosophical beliefs. We have different goals, different purposes and different jobs and responsibilities. Yet, we easily engage in foolish controversy with them. It would be best for all, especially the developmentally disabled, to work cooperatively to build an appropriate system.
It is important for us to engage in honest discussions with the State seeking to achieve mutual agreements and philosophical acceptances. We all required to alter our points of view based upon strength and not weakness; based upon the strength for cooperation and consolidation and not relying upon the feigned weakness of litigation.
Litigation appears to be an important part of the dance that costs too much money, time and effort. We must educate and teach the government, the legislature and ourselves that we have different goals and different obligations. The State of New York and the Legislature must understand and accept us and accept and adopt our priorities.
The alternative will generate more and more, wider and wider litigation. I must admit and acknowledge that the Class Actions I was actively involved with (Willowbrook and Suffolk Developmental Centers cases) Class Members received a much higher level of good services ,especially in small community residential homes, and both of those institutions were closed.
Although I feel that Willowbrook was a key case maintaining excellent philosophically thoughts and ideas throughout the case. However, those who got the most benefit from the Willowbrook Case, the first winner of the best prizes winners were the voluntary agencies, its top administrators, experts and government administrators and employees. In addition, that same group enjoyed more than 30 years of peace.
I wanted the clients and the direct care staff to be the priority beneficiaries for the victory but they have remained to be at the bottom level, secondarily rather than priority.
How could this happen? It makes me cry.
Such issues will be further discussed and I will accept and respond to any thoughts or questions you may have.
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