When Will It Be Our Time?
AS I WAS SAYING . . . When Will It Be Our Time?
By Murray B. Schneps
June 29, 2017
I wish to express my appreciation to all who have read any of my articles. Thank you for your time and interest. I feel compelled to accept the challenge of a new book that will require careful consideration encouraging and convincing parents and family members having children and family members who are developmentally disabled.
I am troubled by the fact that things and life is not better for the developmentally disabled individuals I am committed to protect and elevate. Today, it is more difficult to feel hopeful and optimistic in the face of the challenges each day. In the 1970s and early 1980s (when I was in my early 30s until my middle 40s), the lack of adequate support from the parents, the relatives, the small band of advocates (ballsy parents and some committed attorneys) seemed quite lonely but I know that I could and would accomplish my goals. And I did. And I am proud of it.
Every parent should and must feel that all goals for their children will be achieved. If not now, when? If not now, it may take many winters before the end of the freeze. During winter days at the Willowbrook State School during the 1970s, I would shed my winter coats, sweaters, gloves and scarves to various men residing there. That may be a sweet story but I recognize that such meager efforts do not address the critical need and necessity for the developmentally disabled.
Since the past 40 years we have known how to effectively operate an excellent system of small community residential homes with related and necessary services and programs. Yet, we have moved further away from the system of small community residential homes with related and necessary services and programs and are moving ever closer to the horrific system of institutionalization. In my opinion, the system of institutionalization never left us. Institutions were never eliminated and it appears to be always lurking for an opportunity to takeover by those who may agree that a system of small community residential homes and services is superior and less expensive. Why do people follow their own worst interests? I really do not know all of the reasons why. Have I reminded you that the actual per person cost for an institution is greater than the cost per person residing in a small community residential home. This is not an opinion. This is a fact. No one with any credibility in the field of the developmentally disabled can fairly or legitimately argue that small community residential homes are more expensive than are institutions. And what do you get for the most expensive residential facility, the institution? NOTHING! NOTHING GOOD!
Never forget that. It is true and has always been so. Institutions can never be decent but small community residential homes, group homes and apartments, can be excellent and problems can be more easily improved.
Obviously, there seems to be a well-established inclination toward the isolation of the developmentally disabled in large institutions. I have many thoughts and ideas on the subject but honestly cannot answer correctly. The older I get, the more I learn, the more I think about it, the more possibilities I can see them as a part of a mass of countervailing thoughts.
During a time when our developmentally disabled are suffering and are under siege, the priority must be to fight as hard and for long possible to make important changes. Neither the Federal or State governments are the font for the source of all wisdom and knowledge. Governments must be viewed and participated with suspicion. Neither you nor your children are governments’ priority; priority has always been money uber alles (above all).
My philosophy, answer and goal are to commit to a system of small community residential homes and services. I can only discern the philosophy, answer and goal of governments and voluntary agencies based upon their acts are focused upon funding and ready to hide away the severe and profoundly developmentally disabled multi-handicapped people. Out of sight, out of mind. Some people require little to forget about the truth. Perhaps, self-blindness is the most destructive handicap.
Our children are neither the top priority nor considered to be on any list of priority. If we are to get our fair shares and our children are to live the best lives possible providing all they need and require, you must demand for what you want, do not be shy, refuse to accept “no,” be more and more united and aggressive. Government will not give you treasure unless you demand it and force them to provide it.
There is a huge outlet for public media readily available to anyone committed to do so. And do not stop. When you lose, attack again. When you win, attack again. Attack and attack until you achieve all required to protect and provide an appropriate life to each of our children.
Work hard and fear not, or at least, fear less.
You can do this. Regular people have done it before and there is more data, facts and information to make your course less complicated with the knowledge in existence and available.
In time, you will begin to notice that the institutional wall begins to give a bit and then crack here and there and you will know that you can and will get it done. However, do not accept any deal no matter how great it appears unless there is provided a permanent structure of oversight by a designated panel of parents, experts, governmental employees and those in the field.
It is our time. Right now.
Until I see you again and AS I WAS SAYING . . .
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My column will be suspended
while I am writing a new book