I must admit that I am and has always been sort of a “lone wolf.” I was blessed with having parents who pressed me to go to school and I became an attorney. Originally, I wanted to be a surgeon but in some respects I was able to utilize my litigation knowledge and skills as a scalpel to excise foolish thoughts and open the arteries and veins to flow toward critical thinking. Thanks, mom and dad. I think more and more that courses in critical thinking would protect our citizens to be more resistant to regrettable destructive thoughts and ideas. It appears to me that too many people tend to vote in their worst best interests, rather than pursuing their best interests and those of their children. This is not an issue of selfishness. It is an issue of self-protection and survival.
It seems to be apparent that some organizations like the ones Ms. Elly Rufer works endlessly with and for NYC FAIR and bFair2DirectCare3. Elly thrives to get her child and all others to get to the Promised Land. This is an appropriate and worthy goal. However, if we are going to get to the Promised Land with our developmentally disabled children we need to critically, honestly and openly face the truth of where we are and where we want to end up. What will your Promised Land look yet? The United States is the Promised Land but needs a few adjustments. Simple adjustments seem to be overwhelmingly impossible by those who will not or are afraid to venture into common sense and reality. Fearful is destructive and unless without critical thinking, fear becomes more intense and functioning becomes restricted until it comes to a stop - frozen.
I do admit that I was always a good fighter but never thought of myself as being a warrior. Sure I can go to battle and emulate being a warrior but that is not within my heart. If there were others to be warriors I would happily sit home. I would always stop and listen to identify others to make the move. When no one stepped up to the bat, I got up and took a few swings.
I continue to press for the recognition and acceptance by the parents and others that our children are in serious jeopardy and we must engage government throughout this country, now. We require a coordinated, committed, educated and aware parents, family members and advocates with a strategy to achieve our goals. What are your goals? My goals were and have essential been the same: (a) to move my daughter out of Willowbrook and into a small community residence with a full array of services in the community; (b) to close Willowbrook and all of the State owned and operated institutions for the developmentally disabled; and (c) to covert our institutional system to a small community based residential and services to all. We removed my daughter from Willowbrook, placed her into a community residence a few weeks from our home (she lived in a three bedroom apartment with two other profoundly developmentally disabled multiply handicapped children, Willowbrook and all but one or two institutional residential facilities exists. By 1977 we had a functional system of small community residential home with services and the Willowbrooks were being eliminated.
There is but a single area in the Appendix “A” of the Willowbrook Consent Judgment that I fought against unsuccessfully was the number of persons residing in each community residence. It was and remains my opinion that no residential facility should occupy more than three people. The Consent Judgment permitted 15 residents each for moderately and mildly developmentally disabled people and up to 10 residents for such who are profoundly, severely or are multiply handicapped.
In order for the State to receive credit for a certified placement of a person from an institution to a community residence every person to be considered to be a certified placement the residence must be properly staffed and trained and providing all that the residents require. In addition, all necessary services, training, education, medical and dental services must be available and arranged for each resident.
The moving of a person from one institution to another is a “transfer” not a “placement.” A “placement” requires the provision of all services in the community residence and in the community. In order to get credit State required producing certified placements.
The Willowbrook Consent Judgment, the Willowbrook Review Panel and the Willowbrook Placement Unit was a very successful and effective legal intervention and the developmentally disabled were receiving appropriate services both children and adults.
The voluntary agencies grew greatly and rapidly and some of them had huge budgets and high wages for it top executives. I may or may not ever tell that story but I may be able to be convinced.
Most people will recognize and acknowledge that this is a dangerous time where many of the gains won and extracted from the State of New York are being lost. I see us being moved ever more closely to a new institutional system that in many ways can be worse than what existed more than 40 years ago. The new institutions will be smaller and thereby more difficult to recognize and identify as being institutions.
We require a new approach to address the current strategy. Fortunately, the State is not very creative and goes to its old strategies like fear, threats, withholding services, giving some funding to have you feel that you are successful so you can relax and feel that you gained something important. Governor Cuomo recently did that in order to shut up or shut down Elly Rufer’s organizations.
Recently, Elly Rufer and her groups won a victory. I appreciate what she and they accomplished but it is important to choose the right fight, the right goal and the right time. Yes, it is important to secure adequate compensation to the direct care employees but if you select that as a goal it should only be an interim goal along the road to the building of the ultimate success. This is not at time to take a victory lap. It is time to use and convert your success into a greater force than you were the day before.
The goals must always be in focus and we must never turn our eyes away from the objective.
Today my objectives and goals are similar but are more extensive and inclusive. Our strategy must extend to vindicate the rights of all developmentally disabled in the United States. Almost 50 years ago I first concluded that I would earn as much money required in order to protect my daughter to protect Lara. I soon realized that as I was likely not to out live, I required a new strategy. I came to the conclusion that I could only protect Lara by protecting all developmentally disabled in New York State. I never made it. We require to be inclusive by accepting the developmentally disabled as full citizens of the United States with clear, specific and detailed constitutional rights. The goal must be to establish clear definable Federal constitutional rights to all residing in the United States, finding that institutions are unconstitional with a detailed definition and a detailed definition of small community residential homes and services as being constitutional.
We did this once before and it worked quite well. It was not that difficult to organize it and supervise it. It can be more easily done today. Take it out of the reach of the politicians and have it supervised and overseen by the Federal court. It was less expensive than the institutional system and would remain less expensive. Many people will actually be saved.
To move ahead in this way parents, family members, advocates, citizens and those in the filed of developmental disabilities must decide that this is what they want and are willing to make a commitment to accomplish that goal.
Can anyone tell me why this should not be implemented?
Visit my Facebook pages [Murray B. Schneps and I See Your Face Before Me];
My website [www.murrayschneps.com].
Visit my new column, AS I WAS SAYING . . ., on my website Link.