I recently had the opportunity to read an article written by David Ferleger, Esq., one of the leading attorneys in the field of the rights for the developmentally disabled. David was an attorney for the plaintiffs in the infamous Pennhurst State School v. Halderman case and has argued before the Supreme Court of the United States on approximately six occasions. To give you a time reference, note that the Willowbrook Class Action was filed in 1972 and the Pennhurst case was filed in 1974.
In May 2010, David wrote a law review article entitled, "The Constitutional Right to Community Services-Olmsted and the Constitution" but I only got to read his law review article in the past couple of weeks. Although, I had been evaluating and attempting to organize a new class action to vindicate the rights of the developmentally disabled establishing constitutional rights for all developmentally disabled and requiring them to be served in small community-based residential homes and residences, I could not get parents, advocates or voluntary agencies to join in with me. Some saw my point but never felt things became desperate. Programs and funding and small community residential facilities are deteriorating and not being developed. The system and programs are heading in a downward path, undeterred or analyzed. If the parents, advocates and voluntary agencies do not wake up, and soon, we will be in a wrong situation as we had in the Willowbrook days. Miserable new institutions will be more difficult to identify than the horrible backwards of Willowbrook and some many others. Unfortunately, I did not know anyone at that time that actually agreed or would participate with me until I recently read David Ferleger’s law review article.
I was filled with optimism and continue to believe that one-day others will see my point of view and, finally, the system will be one of small community residential facilities, based and supported by constitutional guarantees. Based upon years of experience, involvement, activity, advocacy and close observation, I am focusing upon my belief that if the developmentally disabled shall receive all they require and need, a serious detailed and specific constitutional determination by the Supreme Court of the United States. Such a determination must be applicable to all within the United States who are diagnosed as having developmental disabilities and supported by Congressional legislation.
For a long period of time I have been advocating for the ending of the utilization of institutions and institutional systems for all persons with developmental disabilities. I have simultaneously advocated for specifically defined and certified small community residential facilities with all necessary and required services, training, education, treatments and necessaries for each individual person with developmental disabilities.
At no time have we ever gotten closer to having a system for defined and certified small community residential facilities with all necessary and required services than we had under the APPENDIX “A” of the Steps, Standard and Procedures of the Willowbrook Consent Judgment. During that period of time (from 1975 to 2005) the developmentally disabled residing in New York State were receiving the opportunity for living in the community with needed and required services and programs. From one point of view, it can be concluded that a large number of people were receiving appropriate services. Such point of view is narrow and short sighted as it disregards thousands of others who received inadequate services. In my opinion the number of developmentally disabled individuals within the State of New York were but a meager number as compared to those who are not receiving full appropriate services within the State of New York and even more meager when compared with the number of all developmentally disabled individuals who are not receiving full appropriate services within the United States of America.
When I reached my conclusion in the early 1970s that one of my goals was to be certain that my daughter, Lara, would be safe within the State of New York, I was being young and immature and unable to foresee that which I was able to learn in the ensuing 40 years. I have learned that unless all developmentally disabled people within our land can be treated and accepted as human beings and not devaluated or separated from life and the community, and possessing equal rights, this country’s attitude towards the developmentally disabled will fluctuate; mostly towards the worst. We have always been living in a fluctuating situation where the developmentally disabled have never been a priority or favored. It is time that they are recognized as being human beings bestowed to all.
Should our children and we be required to constantly face the refusal of providing indisputably necessary and required services?
Will it be possible to secure the benefits to which our children are entitled and required without making a firm commitment to achieve, that which is necessary and required?
Does anyone believe that what we are doing as advocates will result in the benefit of providing all such necessary and required services? If you do, when will that occur?
It is my belief that we are fighting the wrong fight; a fight that is not important to win. It is imperative that we clearly outline our goals and in my opinion the goal must be the establishment of constitutional rights for the developmentally disabled throughout the United States to secure all necessary and required services, residential and programmatic, within a small community residential system. Such an all inclusive system backed up and supported by clear Federal Constitutional rights and Congressional Statutory support will assure that the securing of appropriate, necessary and adequate funding, including the direct care workers.
I have never heard nor seen any indication (other than the Willowbrook case) where consistent services were or will being provided. It does not exist and will only exist if we demand our system must be established under constitutional requirement.
I am reminded of the words contained within our United States Constitution that bars anyone to “deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.” I accept and support the words and intention of our Constitution and believe that while the road may be curvy, bumpy and unpaved we can get to the end of the road and secure the rights to which our children are entitled.
As an optimist I have always believed that if anything can be contemplated, it cannot be impossible. I refuse to accept the belief that important needs and requirements can be impossible to achieve. At the least, I will get very much closer to my goal.
What is your goal for your child?
What are you willing to sacrifice in order to achieve that goal?
Have you ever listed or itemized your fears?
Have any and which of those fears have ever materialized?
In my experience, for the most part, people are greatly influenced and even paralyzed by fear that is anticipated but never experienced. Invariably, should the fear you worry about befall upon you, that fear is not as fearful than anticipated. More than 80 years ago Pres. Franklin Delano Roosevelt attempted to calm the fears racking through its populace coined the famous quote, "only thing we have to fear is fear itself." Pres. Roosevelt also warned the nation that fear could be paralyzing.
I agree with David Ferleger, Esq. and Pres. Franklin Delano Roosevelt. If you do not wish to agree with me, that is not a problem. But, please, listen to them.
It is imperative to begin the hard work to win. It will not be an easy win. We will have ups and downs but that is simply the road we must travel. Your goals must be ultimate goals and not simply interim goals. Establish a road destined to get to your goals and rely upon your plan.
The States will fight like crazy but we have more at stake than they do. I know what parents can do. Once motivated and organized parents cannot be stopped.
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