Another Disappointment

AS I WAS SAYING . . .

ANOTHER DISAPPOINTMENT

By Murray B. Schneps

February 22, 2017

A coalition of advocates and voluntary agencies (bFair2DirectCare) have been pressing Gov. Andrew Cuomo to grant funding of $45 million to provide a living wage for direct care workers offering services for the developmentally disabled. A good and strong effort was made but to no avail. They were disappointed by yet another rejection by the Governor who seems to have turned his back against the developmental disability. Mr. Cuomo seems to have turned a blind eye towards the developmentally disabled during his quiet endeavor to become the Democrat Nominee for President of the United States. Rather than fulfill his obligations to provide adequate and necessary services to and for the developmental disabilities, he is dedicated to continue to cut his budget to the great detriment to those in need.

It had been my opinion that the coalition was spending too much time and effort to assure a more equitable salary to the direct care staff, in spite of the fact that it is and has been imperative to pay a fair living wage with benefits to those in the front lines of the provision of services to the developmentally disabled. I thought that the primary target should be a direct challenge against the return to the institutional system and re-establishing a solid permanent system of small community residential homes and services.

I had always thought that the State’s arrogance and laziness would be its own Achilles’ heel. The State has demonstrated that my longstanding view remains strong, well and alive. As the coalition began to strengthen, I predicted that the Governor would throw a bone to the coalition and the direct care providers; much less money than was required or sought but an amount to let many think that they have achieved a win. Encouraged by limited success parents and others will continue to press further to fill-up the funding gap. Such venture down the rabbit hole would take much steam from the engine.

Governor Cuomo made a strategic error politically. Now I am not and will never consent to let anyone suggest that I am a politician; however, I do think and I can reason. The Governor delivered a clear and indisputable message, to wit: neither the developmentally disabled nor their parents, nor family, nor direct care providers are important to me. No money or power you know!

Considering the fact that Gov. Cuomo is supposed to be a sharp operator, tough guy, a political guru, he cannot prove it by his own behavior regarding the developmentally disabled that are sinking back to institutionalization. Politically, both neither his father, Gov. Mario Cuomo, nor Gov. Hugh Carey, would agree with his tactics.

I urge all parents, family member, supporters and advocates to use this misstep by Mr. Cuomo to punish his stupidity and meanness toward the developmentally disabled. Follow-up his off the cuff rejection and make him pay for it. Cry out loud to all in the media making them know that we will neither stop nor relent until all developmentally disabled people are in a safe appropriate environment with the State of New York and beyond that to the United States. Until all developmentally disabled people are safe in the United States, no one of them will actually be safe.

It is my hope that not any parents, family members, advocates, direct care employees citizens and those in the field of the developmentally disabled have lowered their expectations for their children and adults. This is a time where it seems to be so easy to give up because it is too hard to overcome. However, this is the time to be strong, unify for the common benefit, rely upon each other, get angry and make demands and be apparently present in words and actions. Gather strength from the challenges. We have been given a real opportunity to eliminate the institutional system for once and for all and permanently establish a humane fair and appropriate system of small community residential homes and services.

If you do not join in aggressively, with a feeling of anger and concern, our children will lose. The children are losing more and more, day by day, as we are speaking. You can win to any degree you elect. The degree of your success is based upon your effort, will and tenacity. Long ago I knew that my daughter, Lara, could never be safe unless all developmentally disabled are safe. After my daughter’s death more than 30 years ago, I continue to press this issue as the State of New York and other State’s are relentless in pursuing the existence of the institutional system.

Within the next few weeks I will be presenting my Abridged Willowbrook Consent Judgment Appendix “A” of the Steps, Standards, and Procedures for all to see what the Willowbrook Class members, at a minimal, received. It is a prescription for class members or not. As a taste, I leave you with a quote from both the Willowbrook Consent Judgment and a separate decision Judge Orrin G. Judd referring to the Steps, Standards, and Procedures of Appendix “A” as:

“not optimal or ideal standards, nor are they just custodial standards. They are based on the recognition that retarded persons, regardless of the degree of handicapping conditions, are capable of physical, intellectual, emotional and social growth, and upon the further recognition that a certain level of affirmative intervention and programming is necessary if that capability for growth and development is to be preserved and regression prevented.”

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