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The View From Here: Dealing With Developmental Disabilities In New Jersey

Justin
Justin

I didn’t want to write about this today.  I’ve been following the story for months, and truth be told it makes me feel raw.  It hits too close to home, takes me out of my comfort zone.

Which is why I have to write about it.

In the past few months two men with severe mental and physical disabilities died from choking after their transfer from the North Jersey Developmental Center in Totowa, N.J. to privately run group homes.  The move is part of a massive restructuring of care for disabled adults.

Their names were Richard Fornarotto, 54, and Steven Cortes, 65.

The state is closing the North Jersey Developmental Center and the Woodbridge Developmental Center in an effort to help improve the lives of thousands of disabled adults because this will help integrate them into their communitities.  Advocates for the disabled say the plans will unnecessarily disrupt lives, and many of the families are fighting the closures.

Nicole Brossoie, a spokeswoman for the State Department of Human Services, was quoted in an article by Stephanie Akin in NorthJersey.com as saying “there was no causal connection between deaths of residents and transfers from community centers.”  She also is quoted as saying that “the administration firmly believes that all individuals deserve to be cared for in the least restrictive environment available.”

Richard Fornarotto and Steven Cortes were under the care of state-appointed guardians as they had no living relatives to handle their affairs.  The two men had lived in state institutions since they were children.

They were two of the 639 residents in the centers scheduled to be moved from these centers to privately run group homes.

Cortes had lived in developmental centers since he was eight.  His care was supposed to include ground up food and constant supervision.  He choked on a sandwich while sitting alone in an office. By the time paramedics were summoned to the scene and discovered food lodged in his throat, it was too late.

Mr. Cortes died on May 17th.

Fornarotto grabbed a cupcake at Shoprite from a shelf and shoved it in his mouth while on an excursion.  When he started choking the group home staff members ran to get water and asked the store customers to watch him. State law requires staff must immediately perform CPR and call 911.

Mr. Fornarotto died on February 19th.

I didn’t want to write about all this today because the subject plays to my deepest fear- that for the 30 to 40 years Justin will grace this earth without me something terrible will happen to him, and neither his father nor I will be there to help.

The quote that struck me the most from the article was from my friend Geoff Dubrowsky, a member of the New Jersey Council on Developmental Disabilities and a guardian of three people with disabilities, who said “These deaths sadden me but they do not shock me.”  He also commented that “When you move somebody from a facility where they have been most of their lives, surrounded by the people who know what kind of care they need, these results must be expected.”

He was saddened, not shocked.  That alone is horrifying in and of itself.

I wish I had the answers to the state budget issues and a way to ensure each autistic individual’s personal care requirements.  I don’t.  But it strikes me that when contemplating closures of this magnitude each person must be looked at on a case-by-case basis, with strict precautions put in place to prevent injury and deaths such as these if they are relocated. 

I am left with questions. 

Why did Cortes have access to solid food? 

Why was he alone?

Why did staff members not perform CPR on Fornarotto in the store? 

Why was he left unattended even for a brief time with total strangers?

My son with severe autism graduates in 10 years.  Just a decade to go until Justin’s parents, who will be pushing sixty, have some difficult decisions to make.

As usual, I want to remain hopeful.

I admit however, when I contemplate his post-twenty-one future, the view from here leaves me scared.

Scared on a good day.

Steven Cortes.

Richard Fornarotto.

To both men and any remaining family members, I am so, so sorry.

Link to article in NorthJersey.com:

http://www.northjersey.com/news/two-deaths-in-privately-run-group-homes-stir-concern-in-n-j-1.1028426?page=all 

For more on my family visit my blog at autismmommytherapist.wordpress.com/

Follow me on Facebook at Autism Mommy-Therapist

 

 

 

 

 

 





anonymous June 16, 2014 at 11:54 PM
I have an aunt who has mental disabilities. She lives in a group home in upstate NY This article hits home for me as well. Only question is what can we do to help?????? Any ideas would help me put something together. Kim if you believe as I do that the people have the true power in any country maybe we can help each other. You have enough on your plate and would like to confront those responsible for this decision. Most people read or fish on there time off I take on social issues and would be glad to bring attn to this problem. ---------anonymous
Janet Clarke June 17, 2014 at 12:13 AM
I think about this every day. My severely autistic 9 year old will grow up one day. Then what? I am blessed to live in an area with an excellent special education program. He grows and matures every day. He has three older brothers who love him. Still, I worry about his spiritual, emotional and physical safety. Not all people working with disabled people are endlessly patient nor competent. Some are wonderful. I just worry about the ones who will be alone with my son. Will my son be able to trust them?
anonymous June 17, 2014 at 01:25 AM
This video will show you why we do what we do as well as why we are so proud of you for bringing this problem into the light. Its off you tube but says alot ---- http://youtu.be/m30dOkvCnq0 Please hon watch it------We must speak up for those without a voice------anonymous
lizod June 17, 2014 at 07:03 AM
Sadly our country doesn't prioritize the care of the most vulnerable. The only bright spot is that we have evolved as a society (somewhat) . Years ago, kids were institutionalized without therapies or any other intervention, leaving them never capable to actualize their potential.....It infuriates me that the state can rationalize the least restrictive environment for individuals who have never experienced an ounce of adult independence - My parents were told to institutionalize my brother in the 60's - they refused and with support and intense intervention he is doing well at 52.... our parents raised us to take care of each other and be each other's safety net in life - we (6 kids) promised our parents we would take care of him in his later years and never let him become a statistic...after reading this heart-breaking story it saddens me that we will have these kinds of tragedies , yet nothing will change.....
Jane Doe June 17, 2014 at 09:18 AM
Closing Developmental Centers and moving the residents to poorly supervised group homes is wrong on ALL levels. There aren't enough group homes to care for all these people and what happens to the others? They end up on the streets to fend for themselves. We have an autism epidemic in this country. All of these autistic children will one day be autistic adults. What then? What happens when their aging parents can no longer care for them? If there is a problem with Developmental Centers, then IMPROVE them. Make them state-of-the-art living facilities, staffed with professional caregivers and medical personnel. I don't understand what the problem is. Nursing homes aren't being closed and they provide care for those who need assisted living .... why is it wrong to provide "assisted living" to the mentally disabled? And I've seen some of these group homes. They can be a nightmare. I've visited Bancroft NeuroHealth in south Jersey. THEY should be the model for the care and residential living for the disabled. But transferring helpless people from the comfort of the the homes and care that they have known is heartless and stupid. Putting them into these half-arsed group homes is cruel. The only reason it's being implemented is because these poor souls can't speak up for themselves.

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