Parents of children with developmentally disabled are easy targets of the political bait and switch. Parents and their children are dependent upon the local schools, special schools and programs and the State and Federal governments to assure that the services and programs they require are provided. They daily face a dependency upon government to fund and provide necessary services and programs, residential and programmatic. Unfortunately the funds, programs and services flow in an inconsistent, sporadic and illogical manner. Government and many citizens seem to be unclear of whether the developmentally disabled are believed to be equal human beings or something less due to their disabilities. A good economy generates a greater generosity toward the developmentally disabled but the attitude fades with a poor economy. I believe that too many state governors and state legislators have failed to make a specific commitment or reached a conclusion whether the developmentally disabled are entitled to being fully viewed as valuable human beings, entitled to receive protection, care, treatment, education, training and other related and required services, residential and programmatic. It is remarkable to me that neither the courts nor the Federal or State legislatures have declared and defined constitutional rights entitled to the developmentally disabled. Until that constitutional issue is faced and determined in favor of the developmentally disabled by Congress and the Supreme Court of the United States, life will remain to be scary and inconsistent for them. Only then will the developmentally disabled achieve the status of being a human being in all respects.
Recently, several parent organizations supported, perhaps, urged by several voluntary agencies, organized to secure more funding to raise compensation for direct care workers. Qualifying, training and appropriately paying direct care workers will elevate their lives and, simultaneously, elevate the lives of those who they serve. It will also benefit the voluntary agencies, as they will be able to pay greater compensation to those employees, anticipate a staff with better training and securing full-time staff with a greater opportunity that they stay on the job and reduce no-show days. Frankly, I support the providing of a living wage to each employee with appropriate benefits. However, I question the concept of the parents taking the lead to press for higher wages. In my mind, the voluntary agencies should take the lead for that fight against the administration and legislature with parents agreeing and supporting those requests.
The parents waged an excellent challenge against Governor Andrew Cuomo. Once the parents began to organize, march and petition and more, making it apparent that they will remain diligent, the Governor’s original rejection of their pleas, (a serious mistake as it angered and severely disappointed the parents) surprised me. It would have been a better idea to approve some of the funds sought to keep the parents quiet and off balance. My concern was that this was in fact a bait and switch, making the parents feel successful and sated. They got some of what they sought but not enough as needed. However, they received enough to reduce the feelings of frustration, anger, loss and powerlessness. The bait and switch will have eliminated, delayed or diverted some of them from the ultimate goal of providing appropriate and required services to all developmentally disabled through out the United States, residential and programmatic.
Following an announcement from Governor Cuomo that he would include millions of dollars in his budget for direct care staff, the parents and voluntary agencies thanked the Governor and celebrated their victory. I always rejected celebrations until the work was done.
Has this ploy worked? Will the parents feel self-satisfied and no longer feel that it is necessary to press to the next level of demands until they face the ultimate show down that will be required? Will they recognize and accept that the system and services are deteriorating, intentionally?
Since 1975, there was no longer any excuse for anyone to say that he or she does not know what services and programs are necessary and appropriate for each developmentally disabled person, child or adult.
I have previously written about OPWDD’s Transformation Panel, a bait and switch manipulation to attempt to convince the parents, family members, advocates, the citizenry and the voluntary agencies and staffs, that the goal was to develop a new and better system to provide better and more appropriate services to the developmentally disabled. The truth is that the Transformation Panel was allegedly a creation by the Acting Commissioner convincing really good people to serve as the Panel. If those experienced and knowledgeable individuals were so easily herded as members to that Panel perhaps everyone must cause a re-evaluation of their knowledge and goals.
The Transformation Panel did not address the issue of a better way to provide services and programs to the developmentally disabled. Rather, it was a ploy and delay tactic to have the time to develop its real plans to brutally cut the budget and force severely and profoundly developmentally disabled children to live at home with inadequate services, programs or support and without an opportunity to live in an appropriate small community residential home. Few small residences are being acquired or constructed. Adults are being forced to remain with their parents, without appropriate or required services and without respite for even elderly parents.
The ploy was apparent after a year or so and many parents became angry and some wanted to take some revenge against the Governor and joined with the move for higher wages to the direct care workers.
I am hopeful that the organizations will take strength and energy from their win and lead the fight for the ultimate goal. We will get there, ultimately, but sooner is better. And never forget that the battle is never really over and you must remain vigilant, independent and suspicious.
Parents cannot afford to be disappointed, discouraged, disheartened, dispirited or despairing, except as a passing feeling. Anger, commitment, toughness and tenacity are much better and will support a winning strategy.
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