I hate to be pushy or seem to be an alarmist but simply spinning ones’ wheels by listening to speakers bemoaning about the lousy ineffective politicians and the failure on the part of governments to provide adequate funding to our children, without making active steadfast demands on behalf of all developmentally disabled and back-up your demands and threats, it will take a very long time before our children will get out from under the isolation, deprivation, boredom, tedium, lack or training or education, the lack of community residential placement, lack of adequate medical and dental services, lack of well trained and compensated staff, practical seclusion and desolation and deterioration. Have I missed anything? Probably.
I have lived it in the 1970s when we forced the improvement of the conditions upwards and forwards. But today, programs for the developmental disabled are plummeting downward again. Plummeting downward ain’t good.
In September 2015, I wrote: “It is time to prepare for an inevitable clash with the administration of NYS OPWDD, NYS and the USA regarded the developmentally disabled as they are inexorably moving to an institutional system. In spite of the fact that it was clearly established that such system was archaic and had no ability to provide adequate services, residential or programmatically the State of New York and the United States seem to be hell bent to taking that course.”
Few people agreed, yet some others had the sense of concern, even fear and dread. Most others acted as if all was fine and could easily correct problems as soon as they share their concerns to the State and Federal administrations. In spite of the fact that they are demonstrably wrong. There has never been a time when government has voluntarily provided adequately, much less, appropriately for the needs of the developmentally disabled. Such blind belief without any proof supporting evidence leads me to believe that they are actually blind or intentionally blind. In an effort to avoid the appearance of the fear to fight they may alternatively make just enough noise to indicate that they care. However, the noise is never enough to make real efforts to protect the developmentally disabled. Small incremental benefits issued by government are distributed like candy to children. The only “new” system I can discern is a commitment on the parts of government to return to the dark days of the institutional system. Perhaps parents have suffered so much frustration that they have be forced to lower their expectations for their developmentally disabled children.
For those who refuse to open their eyes and incorporate the daily realities, seem to be delusional.
Until one learns the lessons of the past, one will revisit them time and time again.
My first three columns were a series that established that the archaic discredited institutional system is and has always been a failure in all respects. Yet, administrations continue to slide back and down into the hell of back wards. They love to use new words and made-up concepts and thoughts in order to camouflage their commitment and reality to permanently establish an institutional system.
An executive director recently admitted to me after I pressed as to why the voluntary agencies have not banded together to organize and make a commitment to resist and fight against what appears to be a wave of movement to re-establish an institutional system for the developmentally disabled. He initially avoided my inquiry. I again pressed for a direct answer. Ultimately, and reluctantly, the answer came, “I know how angry you are about where we are at. I feel it too - it burns me up. Other than what I said above, I don't know what else we can do.”
I do not understand that answer or accept it as the truth. I have held a longstanding opinion that the voluntary agencies should never become large and never imitate the government. I always favored small voluntary agencies as they maintain the primary goal and purpose is the best interests of the clients. The clients no longer seem to be the top priority. It appears to me that the top priorities are the existence of the agency and making certain that the executive directors are well compensated and the agency exists. In reviewing the report of the Division of Data Management and Performance Metrics of the New York State Office for People With Developmental Disabilities as of September 28, 2016, my random selection of 15 voluntary agencies operating in New York City and Long Island the average compensation for those executive directors were $361,220.00 annually each. Of those 15 executive directors the range of the compensations were $205,000.00 to $479,000.00. I found that those figures staggered me.
With all due respects most of the larger voluntary agencies are business men and women, Chief Executive Officers, and extensively not trained to be in your face advocates or warriors. Times are very tough and only powerful advocacy with a persistent tenacious commitment to fight the battle to the end. It is not easy nor is it pleasant but it is necessary. Everyone must pitch in and pull up its big boy and big girl pants and make a commitment and organize and fight. Government will not give in without being forced to do so. Government always liked and supported institutions and look back upon them as the good old days. Not all the good old days were very good for every one. Yes, there were fewer choices and some people thrived upon such limitations. Others felt as if they were being choked and strained for a breath.
We have lost too much time hoping and looking for some magical solution. The solution is within your own hands. It is all the power you have so long as you use it strategically, intensely and as a unified force.
I recognize that fear is a major issue. Most fear is the anticipation that something negative will occur. However, if you fight for your rights and those of your children and adults your feelings of fear will dissipate or reduce extensively.
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