June 16, 2014

The View From Here

Posted in AMT's Faves tagged , , , , , , , , , , , at 8:32 am by autismmommytherapist

 

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 New Jersey 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 thirty to forty 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 ten 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

 

 

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February 24, 2014

Parents of Autistic Children (POAC) Gala 2014

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , at 3:57 pm by autismmommytherapist

POAC 1(Gary Weitzen, Executive Director of POAC)

This past Saturday evening I had the luxury of having a girls’ night out with a dear friend at the annual Parents of Autistic Children (POAC) gala, a celebration of fifteen years of their service to the New Jersey autism community. I was deliriously happy to get out of my house (this winter has taken its toll in more ways than one, ask my poor scale), and an event with parents of children with autism as well as autistic adults themselves was something I’d eagerly been looking forward to for weeks.

In addition to good music, good food (a pasta appetizer bar!) and even greater company I always seem to come away from this evening reenergized, more able to focus not only on the issues my two children on the autism spectrum are experiencing, but on their accomplishments as well. And in addition to eating and dancing the night away, everyone in attendance spends a good part of the night bragging about their kids’ successes to people who “get it.”

Frankly, it’s a fabulous perk of the night, right up there with those addictive chocolate-covered strawberries Eagle Ridge always serves at the end.

As my friend Babette and I settled into our table I prepared myself for POAC Executive Director Gary Weitzen’s annual speech (he never fails to make me cry at least once), searching through my night purse for a pen to take notes as my memory (and many other things) aren’t what they used to be. As usual, with his words I was rewarded. Gary did a wonderful job outlining the myriad ways in which POAC, which is the largest provider of free autism training and education in the entire state for both teachers and law enforcement officials, also provides a myriad of free recreational events for families.

POAC 2(Me, Gary, and fabulous friend Babette)

He also recounted a moving anecdote about his wonderful adult son Chris, regaling us with his desire to hear his then four-year-old child speak just one single word, a wish thankfully granted. Gary went on to inform us that for the past decade-and-a-half POAC had been building a parachute for families, and that now their focus would also include job and residential opportunities autistic individuals over twenty-one. As always, POAC is always looking both to improve their services, and to plan for the future of our children.

I have no doubt they’ll come through for all of us.

The night’s speeches were capped off by a moving slide show featuring autistic children and their families at various events, as well as the volunteers who single-handedly make POAC such a successful autism organization. Traditionally this hails my second crying spectacle of the night, and for once in an effort to preserve my mascara I permitted myself to turn away and take a good look, a really good look, around the gorgeously decorated room.

As I scanned the tables I saw fierce and Congress-celebrated autism advocate Bobbie Gallagher rubbing the shoulder of her beautiful adult daughter Alanna, and couldn’t help but recall how she’d helped me when I first moved to our town, assisting me in navigating the special education component of our school district. I watched as Simone Tellini (Gary’s right hand at POAC) was held rapt by the power point, and thought of the struggles she’d shared with me about her adult son with autism, how she’d moved mountains for him during a time when nobody really knew much about the disorder or truly seemed to care.

As I shifted in my seat I felt behind me the presence of Geoff and Roe Dubrowsky, two advocates who have advised politicians and served on every local, state and federal committee known to man, who also have an adult child on the spectrum. I truly looked around the room at one hundred and fifty people in their finery, all here to support one another as well as the organization hosting them.

I entered that room and saw it mostly full of strangers. By the end of the presentation, I felt myself to be an integral part of a growing, vibrant, and incredibly committed community.

POAC 4(Geoff Dubrowsky, Gary Weitzen, Roe Dubrowsky)

I’ve been a POAC member since shortly after I moved here in 2008, and I cannot emphasize enough how much this organization has meant to my family, and to countless others in the state. They are a well-spring of information, and provide those all-important recreational events for families in a safe environment, where no child or adult is ever judged. I am truly grateful to them for their continued support, and most importantly for the friendships I’ve made there, men and women whose acceptance, kindness, and humor have helped get this family through some dark times into the light.

It’s possible I appreciate their humor the most.

Whether you’ve had the “autism experience” for over a decade as I have, you have a child who’s newly diagnosed, or you’re simply looking for a wonderful place to volunteer, I can’t recommend POAC enough. I’ll list their contact information below, and I encourage you to reach out, whether it’s to gain help, or to offer yours. We are a community unto itself.

And if you’re seeking a community who cares, you’ve found your home.

Contact POAC at www.poac.net