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Things Are Too Quiet


Things Are Too Quiet

By Murray B. Schneps

June 13, 2017

Things seemed to have gone quiet. Quiet, can be the most frightening sound during time when parents are to be engaging and letting all know about their frustrations, demands and intent to change this broken/nonexistent system for alleged services for the developmentally disabled.

Now, it has been more than two months since the confrontation against Governor Cuomo in which Ms. Elly Rufer and several parent organizations secured an agreement from the governor to provide additional funds for compensation for direct care employees. While Gov. Cuomo agreed to provide additional funds, he did not agree to provide the amount sought.

Initially, I was hopeful that, Gov. Cuomo would reject the plea for additional funding as such rejection may activate the parents and parent organizations to become more aggressive and fight for all the developmentally disabled are entitled to. I feared that Gov. Cuomo would provide a substantial but inadequate amount of funds. By providing funds for direct care employees many parents will conclude that they are finding and need not take serious action.

Unfortunately, the governor agreed to provide an amount of money to initially satisfy the parents and voluntary organizations. To me this was a plain and simple manipulation. For all the years I have been working as an advocate on behalf of the developmentally disabled (once referred to as the mentally retarded) jousting and battling against the State of New York beginning in or about 1969, New York State and its Department of Mental Hygiene always utilized a similar (if not identical) game plan. First, deny, deny and deny. Second, delay, delay and delay. Third, befriend and co-opt as many parents as possible. Fourth, make parents feeling grateful with tidbits like conferring with them, providing “secret” information and suggestions of special handling . Fifth, provide funding at an inadequate level that the parents and agencies can argue that they secured substantial gains toward goals leading to the next round of negotiations when their ultimate victory will be achieved.

Once the parents accept an inadequate funding package, or fail to take action to overcome inadequate funding, they are stuck and their odds for a successful litigation may be jeopardized.

Keep in mind that you are powerful people who are opposed to providing adequate, required and necessary services to poor, elderly and handicapped people. I have said it before and will say it again and again until parents recognize that the developmentally disabled or not favored in our society. They simply do not love our children.

In order to be successful in changing the direction of the State of New York pressure must be applied on a continuous basis. It takes time, effort and great tenacity to never give up. Remember that the State has an advantage in that its employees are paid to work on a full time basis. Few parents have the luxury of spending full-time without earning a living. However, we have the greatest stake in success of our children and a smarter, more knowledgeable, more angry, more frustrated, more desperate and more ready and willing to fight harder.

It is imperative for parents to know and understand that without active parent participation and leadership such an effort can never be successful. Of course, others will be necessary including lawyers, public relations people, the media that is greatly extensive and varied, experts and those in the field of developmental disabilities but the turning around an institutional system and getting back on the road for a real permanent system of small community residential homes and necessary services.

Some may think that I simply repeat my own mantra and perhaps that is true. However, it can be my own mantra and still be true. No one has ever presented to me a better system seen or heard of a better resolution for the developmentally disabled as that provided in the Willowbrook Consent Judgment. I do not believe that parents and others have concluded that the system of small community residential homes does not provide better and less expensive services and programs. Rather, too many parents, family members, neighbors, friends, advocates and those in the field of developmental disabilities have been beaten down, frightened and lowered their expectations for their children.

On March 28, 2017, Gov. Cuomo issued a promise to include in the current budget being negotiated a specific sum of funds for increasing compensation to direct care employees. It is now the end of May 2017 and the budget has still not resolved or enacted by the legislature. It appears to me as if those who pressured Gov. Cuomo to fund a raise to direct care employees have taken no further action to continue making demands and pressuring the governor and all administrators and legislators.

As I see it, taking a victory lap is premature and possibly injurious. Even if adequate funding for the direct care employees is provided by the legislature (an excellent example of excellent advocacy) we will still have difficult and more important goals and accomplishments in order to provide proper lives to our children.


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My next column will be published on June 29, 2017

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