When I was a young man I had little patience waiting time for something important to occur. This was especially true when my first child, Lara Rebecca, was born soon revealing that she suffered from profound developmental disabilities with multiple handicaps. My daughter remained an infant throughout her life. There was little time to waste. I always felt and knew deep within my heart that time was never our friend. I felt that I had to see to it that my Lara would be protected, safe, provided a real life and cared for during her entire life in the State of New York; a time I anticipated would continue after my death.
I was fooled though. Lara died on February 21, 1986. Now, 31 years later my bounce is a bit more like a shuffle. But will neither stop nor give up. I continue to make efforts to be certain that all developmentally disabled in the United States are provided with care, treatment, education, training and a life in the community. Love and commitment can and must endure. Honesty and tenacity will win out.
Things are not doing very well for the developmentally disabled and their families. We are persistently being forced into an institutional system utilizing larger and larger buildings, rather than rather than small community residential homes. The State insists and implies that smaller institutions are more expensive to operate. That is a demonstrable falsehood. Institutions have and are more expensive than are small community residential homes. There is no economy in size. Clearly and simply it is incontrovertible that institutions providing bare necessities and few adequate services are more expensive than are small community residential homes with a full array of services.
It is clear for anyone to see that such services are being reduced and eliminated especially for those who cannot grow and develop toward normalcy.
I recently received a copy of the plaintiffs’ attorney Amended Complaint and Jury Demand in D.K., Z.O. and B.R. v. Tiffany Teams, et al. This action is filed in the Federal District Court in Manhattan seeking money damages for alleged injuries and abuse sustained by three of the 20 residents residing in a large residential home suggested to be a group home. It is an insult to every developmentally disabled person and his parents and family to refer to that place as a group home. IT IS AN INSTITUTION, PLAIN AND SIMPLE. Think, consider and learn the language and not the phony words used and urged by government and wannabes. Those words seem to elevate some by believing that they are experts and others are being distracted. This is a very old tactic. In the late 1960s or early the 1970s, the NYS Department of Mental Hygiene told us that they were establishing a new program called, “Decompression.” How they loved technical/scientific words. When I insisted for an explanation of that word, they chose the term “decompression” rather than acknowledging the fact that Willowbrook was grossly over crowded. This is a diversion tactic.
In the D.K., Z.O. and B.R. case, money damages and enjoining the NYS Office of People with Developmental Disabilities from violating the rights from the three Plaintiffs under federal law.
The defendants named are direct care staff, supervisors and the name of the Acting Commissioner of the Office of People with Developmental Disabilities. I cannot understand why the attorneys failed to name Governor Cuomo as a defendant. Maybe they have a strategy I am unfamiliar with.
I am also disappointed to note that the relief seeks for the following separate items:
compensatory damages against the staff members named in the amended complaint – an action seeking money for the three defendants;
compensatory damages against OPWDD administrators - an action seeking money for the three defendants;
punitive damages - an action seeking money for the three defendants;
enjoining OPWDD Defendants from violating Plaintiffs’ rights under federal law;
awarding attorneys’ fees and expenses from the State of New York under federal statutes, New York State statutes and New York City statutes; and
a standard omnibus request for the Court to grant “such other and further relief as the Court may deem just proper.”
I was disappoint that plaintiffs’ counsel failed to seek to close the facility and move all residing in the building and placed into appropriate small community residential homes and group home together with all necessary and required services in the community. In addition, no request sought for relief under the United States Constitution.
While my approach is different from plaintiffs’ attorneys, each point of view must be respected.
It is important to be realistic and seek only the actual truth rejecting diversion and distraction. Sometimes we need some diversion and even fantasy but never when it comes to our children. Many people avoid confrontations in the hopes of a reasonable solution that will result in the improvement of the conditions and lives of the developmentally disabled. The avoidance of confrontation in the face of continuing deterioration of residential and programmatic programs is a foolish fantasy. We have never achieved serious vindication of the rights of the developmentally disabled without confrontation and committed litigation. The promised abridged form of the Appendix “A” with its Steps, Standards and Procedures of the Willowbrook Consent Judgment will introduce most people to the remarkable benefits and expansive coverage of services won for the Willobrook Class members.
The Willowbrook Consent Judgment and its Appendix “A” was executed and entered by the Court almost 42 years ago. At that time everyone knew what is needed and required for each person who is developmentally disabled. Now, the people at the State of New York and OPWDD have been asking for advice and how and what to do to improve conditions for those with developmental disabilities. And, we have bought into that baloney and gone into a dazed, disoriented and confused twilight swimming in a pool of slow motion. Just read the original or abridged Appendix “A” and you will see what your children have been missing.
Wake up everyone. This is the real living world and time moves on with you or without you.
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