An Update In Advance of The Abridged Form of the Appendix “A”
AS I WAS SAYING . . .
By Murray B. Schneps
March 22, 2017
I have been working diligently to complete the Abridgement form of the Appendix “A” of the Willowbrook Consent Judgment.
It is incontrovertible that the Willowbrook Consent Judgment and its Appendix “A” with extensive Steps, Standard and Procedures is one of the most important and relevant documents to the developmentally disabled. I remain awed and astounded after first seeing and reading the Consent Judgment with the Appendix “A” in 1975 (almost 42 years ago). Each time I read the document, I see more and more in it. I see it as an incredible manifesto and a beacon to luminate our way home.
Those who are parents, family members, friends, neighbors, advocates, citizens and in the field of providing services to the developmentally disabled are urged to read my Abridged Appendix “A” to learn what was won, what was taken away and what can and should be required to every developmentally disabled person residing in the United States. Perhaps, I should say the World as I made a serious mistake years ago but only addressing those within the State of New York.
I must believe that few of any of you have ever read the Appendix “A” and of those who have read it, in whole or in part, probably read it many years ago and are unable to recall many if any of the provisions. It will envelop you and inspire you to take real action to insist that similar or identical services be provided to all developmentally disabled persons.
Almost 42 years ago, its was known what and how to provide appropriate care, treatment and services to the developmentally disabled. It was provided under the Willowbrook Consent Judgment. Approximately, 35 years ago the State of New York decided to destroy the effectiveness of the Willowbrook Consent Judgment by eliminating real oversight, failing and refusing to fund the Willowbrook Review Panel.
From that period thereafter, we have witnessed consistent, persistent deterioration of services especially to those who are the most severely and profoundly disabled. Most recently, the NYS Office for People With Developmental Disabilites has had the audacity to make a great deal of noise and spent a large sun of money (even inducing some well respected experts in the field) in a wasteful spurious search to learn what is required for the developmentally disabled. I am referring to OPWDD’s Transformation Panel where it was said to be the Mission to “provides capacity building by promoting policies, plans and best practices that:” and where Acting Commissioner Kerry Delaney said that she asked the Transformation Panel “to shape clear and actionable recommendations to guide our path forward.”
Little if anything happened except that the State continued to eliminate the development of small community residential homes, reduced community based services and programs especially for those who were older than 21 years of age and were severely or profoundly developmentally disabled. Being multiple-handicapped reduced one’s chances for more services. The State continues to play out its plans while looking for some magical non-existing plan. They always love to delay, delay and delay.
We had a great plan and it worked extremely well. Take a look at it and read the Willowbrook Consent Judgment with its Appendix “A.” It will be available (unabridged) on my website, www.murrayschneps.com., on March 29, 2017. To access the Abridged Appendix “A”, click “DOCUMENTS” at the top right; then, see “COURT DECISIONS” with a list of items at the left. Click the first item on the left the Abridged form will appear.
In future weeks I will set forth some commentary regarding the Appendix “A” and be available to answer any questions or debate any issues.
This is a very difficult time as we are being presented with similar problems and issues faced many years ago. Some hoped the Willowbrook case would close the door to a system of institutionalization for the developmentally disabled. However, life is a repetitive cycle and vindication of the rights of our children is an endless plight. We cannot afford to lose.
“Those who fail to learn the lessons of history are doomed to repeat them.” This well-known quote has been attributed to both Edmund Burke and George Santayana. It is a painful reminder life and people do not change greatly. Yesterday will give us the answers for today.
I wish you health and peacefulness with the release from the feelings of being dazed, disoriented and confused. It is possible to stop the slide and establish things right with establishing a nationwide system of small community residential homes and all related services can happen. It will not be easy to accomplish this. It will require a commitment to the cause of always providing the best for your children. Actually, the “best” is the provision of all that is required, appropriate and necessary.
Although, for the past more than 40 years I have supported and urged the establishment of small community residential homes and residences of no larger than three beds.
The following are some words from section V. COMMUNITY PLACEMENT of the Appendix “A” of the Willowbrook Consent Judgment:
“a ‘community placement’ shall mean a non-institutional residence in the community in a hostel, hallway house, group home, foster care home, or similar residential facility of fifteen or fewer beds for mildly retarded adults, and ten or fewer for all others, coupled with a program element adequate to meet the resident’s individual needs.” (paragraph 4.); and
“The primary goal of Willowbrook and the Department to ready each resident, with due regard for his or her own disabilities and with full appreciation for his or her own capabilities for development, for life in the community at large. To this end, defendants shall develop a full program of normalization and community placement with a full complement of community services.” (paragraph 9.).
Who would trade with what you have now and what appears to be the future, rather than receiving the terms, conditions and provisions set forth under the Willowbrook Consent Judgment with its Appendix “A”? Read it and I am certain that you will agree with me, in a heartbeat.
I am pleased to inform you that on March 29, 2017, my Abridged Appendix “A” will be ready and published on my website (www.murrayschneps.com). Click at the top of DOCUMENTS and the document will be found at the top list of Court Decisions.
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My next column will be published next week.