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Dachel Wake Up: NY State Housing Opportunities for Developmentally Disabled

Dachel Morning Wake UoBy Anne Dachel

Sept 13, 2016, ABC13 Buffalo: Group sues state over living opportunities for adults with developmental disabilities

BUFFALO, N.Y. (WKBW) -A group of local parents and caregivers has filed a class action lawsuit against Governor Andrew Cuomo, accusing the state of providing an insufficient number of residential living opportunities for adults with developmental disabilities.

The lawsuit, filed in federal court in Buffalo on behalf of more than 2,000 Western New Yorkers, claims the governor and Kerry Delaney, acting commissioner of the New York State Office for People with Developmental Disabilities, violated their obligations under the Americans with Disabilities Act to provide proper residential accommodations. 

According to the lawsuit, more than 11,000 people with developmental disabilities statewide are awaiting placement by the state in a certified residential community that can meet their needs.

Bruce Goldstein, attorney with the Buffalo law firm of Kenny, Shelton, Liptak, Nowak LLP, says this lawsuit aims to provide peace of mind to the aging parents and caregivers of New Yorkers with Down Syndrome, autism and other conditions, knowing before they die that their adult children will be cared for properly.

This is just the beginning of course. If anyone thinks 11,000 people with disabilities on waiting lists in New York State is terrible, ten years from now, it's going to be a whole lot worse.  And while this lawsuit is intended to "provide peace of mind to the aging parents..." it probably won't. This is just the first wave of the ASD tsunami to make landfall. It's a local story out of Buffalo, NY, and no matter how often groups of parents in individual states demand the government do something, it'll never be a national health crisis, and we won't be hearing about it on CNN.

While Down Syndrome is mentioned along with autism, it's clearly the autism that's the problem, since no one has documented a sudden increase in DS.

So why the waiting lists? Hasn't NY always taken care of their disabled adult population? Why can't these 11,000 individuals go where they have been in the past?

While federal health officials have never actually stated that there are more children with autism, there's clearly something wrong here. (Note the caveat that is always issued whenever the Centers for Disease Control updates the autism rate: We don't know if THIS increase means there's been a change the number of affected children, or if it's merely better diagnosing of the disorder by doctors. Of course they're referring the previously rate, not the autism numbers over the last twenty-five years.)

Somehow we're all supposed to believe that after the definition of autism was expanded in 1994 to include less severe forms, doctors took twenty years to accurately recognize all the kids who have it. (And no one knows if it will stop at 1 in 68.)

1995 1:500

2001 1:250

2004 1:166

2007 1:150

2009 1:110

2012 1:88

2014 1:68

The mysterious disorder overwhelmingly affecting children that we still don't understand, but that has always been here, shows no signs of going away. No official has ever been alarmed over the fact that there isn't a comparable rate among adults. They won't even look for autism in middle aged and elderly people, most likely because they know they won't find it.

In the end, this disaster will be dumped on the states. It'll be up to the taxpayers to provide for all these kids as adults at the same time autistic children will continue to fill our schools. And just as we've all gotten used to hearing about children with autism and the need for awareness, we will now turn our attention to more and more young adults on waiting lists. As the years pass, autism will become just part of the human condition, and we won't remember a world where vast numbers of people weren't "on the spectrum." Lots of people will be employed because of autism: diagnosing it, providing therapy, manufacturing medication, and teaching and caring for all those with ASD.

Welcome to the United States of (Autistic) America. (And New York State should definitely turn its attention to building group homes and training caregivers. They're going to need them.)

Comments

Gayle

We are the parents of an adult son with autism who aged out of school in New York eight years ago. The wait list for housing since then has grown astronomically with more being added to the list every day. Our son is on a list called New York Cares and the system has a priority code attached to each person. Priority one is if a parent dies or has a catastrophic illness and can no longer provide care. Priorities two and three mean that you will be waiting years for a placement in a group home. We, the parents, are left with the nagging fear of what will happen to our loved ones after we are gone. The anxiety this is causing many parents I know who are in the same position is unimaginable. Governor Cuomo and Kerry Delaney should be held accountable and maybe this lawsuit will bring about a change in New York policy for the disabled.

Jeff

I will say one thing in Cuomos defense, reluctantly. I know several people who work in the group homes. They are put through a rigorous training course in West Seneca for a month plus. They learn skip moves, mandated reporting, individuals (residents) rights, etc. Injuries and possible hazards are thoroughly documented and they are making a genuine attempt to protect the rights and integrity of the people. They come in to their position fully trained and aware of what is expected of them. Still way understaffed though. Maybe Cuomo should sit back down with Kennedy and actually listen this time.

Jeff

The first rebuttal you will encounter is that they closed institutions like Willowbrook and that is where the disabled adults used to go.

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