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.
To both men and any remaining family members, I am so, so sorry.
Link to article in NorthJersey.com:
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