Where Are The Next Generation of Parent Advocates For Our Children? Services Are At Risk!

I often get questions from parents of children with special needs about my community and professional involvement in the developmental disability arena. Some of the questions ask: How come you are the President of the Board of Arc of Westchester?  Why do you go to Albany to sit on the NYSARC Board of Governors?  Why do you spend so much of your time volunteering for organizations and agencies that work with people with disabilities and their and their families? How come you have devoted your professional career to advocating for the rights of people with disabilities and their families? How come you do so many workshops teaching families how to advocate and understand their rights?

My answer is that I have a child with Autism and I must protect the services he will need for the rest of his life.  How could I not?  I also realize that it was not so long ago that children, like my son, had absolutely no right to an education or services.  It was PARENTS who stood up and advocated for the rights that our children have today.  Did you know that it was not until the 1980’s that there was finally a comprehensive infrastructure for programs, services and benefits for people like my son in New York State?  It scares me to no end that there is not that new generation of parents to take the lead especially when our children’s services are now at risk!

Let me give you an example of what things were like 40 years ago.  I know a wonderful inspiring woman, who lives in the Westchester Rivertowns community.  She has a son with developmental disabilities who is now in his 50s.   He had significant developmental delays and many behaviors such as not sleeping, screaming and fleeing if he was not supervised.  These behaviors may sound familiar because many of us deal with these types of behaviors with our own developmentally disabled children.  The difference is that she and her husband went to the local school district and asked if they had some sort of class for their son.  The school district did not.

Not only did the school district not have a program, but also they sent the parents away because the school district had absolutely no obligation to take the boy. There was no right to early intervention or education at all at that time if you had a child with a developmental disability and there were no benefits available or any programs that the parents could utilize to assist them. This family tried and tried to keep their son at home, but with the sleep deprivation and having to handle five children and still make a living, they realized they could not do so anymore.

The ONLY option for this family was to place this child in an institution.  The institution these parents were forced to put their child into was Willowbrook.  You may have heard about Willowbrook and if you have not, I urge you to watch this short YouTube video http://www.youtube.com/watch?v=k_sYn8DnlH4 and then if you wish to see more, see the entire documentary.

This woman and her husband did not abandon their son at Willowbrook. There was ABSOLUTELY no other choice for this Westchester Rivertowns family.  It was heartbreaking for them.  When I hear this mother speak about her visits with her son at Willowbrook you cannot help but cry. New York State treated children and adults with disabilities in many cases like un-trainable animals.  On a positive note this wonderful man is now living at a group home in Scarsdale where he lives a happy, productive and meaningful life.

I recently visited the site of another institution that housed people with developmental disabilities in Rockland County: Letchworth Village.  Letchworth Village was a state run facility that closed and has a history muddied with having at one time a population twice what it could hold and had allegations of mistreatment.

If you have never heard of or seen Letchworth Village please watch this short YouTube video http://www.youtube.com/watch?v=G-wAwqq_y20. It is mostly abandoned at this time, but there are some local state offices at the site.  If you visit Letchworth today you need to visit the graveyard where 910 anonymous graves are marked with T-shaped metal markers with no names, just numbers.  How the state devalued the lives of the poor souls buried there by not even finding the need to pay for gravestones?  There were some parents that placed headstones for their children – the oldest one I saw being 39 and the youngest 6.  The average age was 15-20.

You may ask – how did we get from where we were in the 50’s 60’s and 70’s to where we are today?  It had a lot to do with powerful people like Kennedys, who were champions for people with disabilities, and the conditions of Willowbrook being exposed by reporters like Geraldo Rivera.

However, the most significant changes came from the work of PARENTS.  It came from parents who would not take no for an answer when it came to their children. It started when a woman placed an advertisement in the local paper looking for a playgroup for her developmentally disabled child.  Parents began meeting and the “Arc” movement began in New York.  Today there is a local Arc chapter in almost every New York County and in most States in the U.S.  The Arc membership and governance has and continues to be mostly made up of parents.

These now much older parents advocated and lobbied tirelessly for the rights of their children to be included in society, be educated and have a meaningful lives.   They were very successful.  For more information about Arc of Westchester you can go to www.westchesterarc.org, for information about another Arc chapter in New York State please go to www.nysarc.org, and for information about an Arc chapter outside of New York please go to www.thearc.org.

Currently New York State has an array of services for a child like my own starting with early intervention, to preschool services, to school age services to adult services. Children with special needs make significant gains with early intervention, school services and with adult support.  Today, people with disabilities can be educated, employed, married, live in residences or independently and lead full lives.

However, these precious services our children receive are at risk.  Where are the parent advocates of today? The older generation needs to pass the torch.  Did you know that the New York State School Board Association is lobbying to cut mandatory special education services in New York?  Did you know that we are heading towards a system of managed care for our adult children with developmental disabilities?  Did you know that many agencies are cutting their early intervention and preschool services because they cannot afford to provide them anymore?

We cannot attempt to balance the New York State budget on the backs of our children. Our children are not sick! When they are sick we take them to the doctor.  They cannot adequately live a meaningful life under a managed care umbrella or with decreased services. We cannot compete with the hospitals and nursing home industry and the school boards; the developmental disability field is not as powerful.

However, parents have done it before and can do it again. We can be more powerful and we must be. We must be the voice for our voiceless children!  Our children are being blamed for a budget that is not their fault.  When the economy is difficult as it is today, people lash out and blame the voiceless; it is easy to blame those that cannot defend themselves.  We need to be proactive and make sure every single governmental official who wants to cut services for our children understands that we will NEVER let that happen.  Our children deserve a full, included, meaningful life. Get involved!

We cannot take for granted that our special needs children, if born a generation ago would not have been educated or have the services we have today. The government must know that the services we get for our children are the necessary services our children require to make progress and live fulfilling lives.  Where are you, parents?

We need to ensure that our children are counted, are integrated into the community, and have the opportunity to live meaningful and happy lives like their non-disabled counterparts. We must look at pictures and see the faces of the children and adults of Willowbrook and the unmarked graves at Letchworth, understand our history, and come together for and with our children and say to New York State NEVER AGAIN!  I know it seems like a daunting task, but parents did it before us and we can and must continue the fight! There is strength in numbers! I hope you will join me.



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