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Posts Tagged ‘Devereux’

Talk about Catch-22

FOILing information from government agencies is like pulling teeth.  There are laws in the way of the core information I want and need – Mental Hygiene Law 33.13, Education Law 29.29, and of course dear ol’  HIPAA.  I can write to request “statements of deficienies” and the course of corrected action taken, but will the statement refer to the nature of the kind of problem(s) I’m looking for (abuse/neglect)?

Not to mention that every page provided to me costs 25 cents, which could end up costing me a small fortune if I’m FOILing 1500 pages of “statements of deficiencies” to sift through.

I thought they could redact (black out or edit) identifying information, but that takes time, first of all, and the records keeper at OPWDD tells me she cannot disclose allegations/complaints/findings of misconduct or convictions – and would never be able to disclose cases of abuse and/or neglect, no matter what – because of those 3 laws I mentioned above. 

I tried to research the laws but I’m like someone in 8th grade science class trying to study quantum physics.  It all reads in legal-ese and makes no sense to me. 

The records keeper was kind enough to send me a 5-page document called “Access to Mental Hygiene Records” but according to that information, I am not a “qualified person” (either the abused person or a family member of the abused) and thus would be denied access to records and documents pertaining to allegations and investigations into any abuse.  Really?

I have to read the whole document more carefully, but to be honest I am getting better (and more) information from simply speaking to other parents who’ve had to make the decision Andy and I are facing.  If that means I’m not intelligent enough because I have failed to acquire a law degree, so be it.

I’ll find out what I can, how I can.

So far Jonah’s been denied admission at both St. Colman’s (they sent me an e-mail explaining “we feel that Jonah needs a more consistant (sic) program and one that does not include the vacation periods that we have.  Our thought is to move him to the most restrictive environment and then move him after a couple of years to an environment like our program.”) and Devereux (because of Jonah’s eye problems), so we’re on to looking at Springbrook, Tradewinds, and maybe a place I hadn’t heard of called The Center for Discovery – a mom told me her son is doing wonderfully there. 

And I think I might re-read Heller’s Catch-22 again. 

There was only one catch and that was Catch-22, which specified that a concern for one’s safety in the face of dangers that were real and immediate was the process of a rational mind. Orr was crazy and could be grounded. All he had to do was ask; and as soon as he did, he would no longer be crazy and would have to fly more missions. Orr would be crazy to fly more missions and sane if he didn’t, but if he were sane he had to fly them. If he flew them he was crazy and didn’t have to; but if he didn’t want to he was sane and had to. Yossarian was moved very deeply by the absolute simplicity of this clause of Catch-22 and let out a respectful whistle.

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Yesterday was day two of Jonah having zero aggressions at school – not sure how long it’s been since we’ve had two days in a row, and once again the hope rises in me.  The people at Wildwood are determined, wonderful social workers, teachers and staff…they do not give up but rather continually change and tweak and modify each child’s individual program, tenaciously working toward an answer, resolute in their skillful, caring methods to lead every child to his or her best self.  I am so grateful to have them.

Yesterday after work M and I came over to the house to watch Jonah for a while.  Andy went to the library and to pick up Jonah’s pull-ups, and I played with Jonah (he loves to jump on the bed, yelling “Jump!  jump!  everybody jump!”), fed him his dinner, and put him to bed.  It was so nice to spend a little time with him, brief as it was, even though I had a nagging fear in the back of my head the whole time that we was going to attack me.  On Saturday M and I took Jonah for a few hours but when I brought him back inside the house and asked him for a kiss, he tipped his little head up toward me and as I bent down to give him a kiss, he grabbed my glasses with one hand and pulled a chunk of my hair in the other.  Andy quickly intervened, leading him away, and I just left, saddened by the end of what was, all in all, a nice visit.

Today it’s snowing hard – we’re expecting 7 to 12″ before the storm’s over, so there’s no school.  Andy is taking Jonah to an early morning eye doctor appointment in this mess, and then maybe Jonah will want to play in the snow or go sledding.  I hope Jonah is good for Andy today.

Yesterday I did some research on four more schools, all of which have 365-day-a-year residential programs for children with autism:

The Anderson Center for Autism (near Kingston/Rhinebrook) will be conacting us in a day or two to set up a tour.  http://andersoncenterforautism.com 

Devereux (Red Hook) Campus – 1:1 ratio – I left a message with them so I don’t know what our status is – supposedly all these schools have been sent admission packets about Jonah.  http://www.devereuxny.org

Tradewinds Education Center at the foothills of the Adirondacks – Utica/Rome (serves cerebral palsy and autism kids) – they have a 12-month residential school program but have not yet received paperwork on Jonah.  They have no current openings but there should be 7 or 8 this year.  http://www.upstatecerebralpalsy.org 

Springbrook (near Oneonta) – spoke with admissions coordinator Cheryl DeDecker; she did not receive any paperwork on Jonah yet.  They are a 365-day-a-year program, and currently there are no beds available.  There should be beds in April and May, and in September they are starting a brand new autism program which can handle 24 more students.  www.springbrookny.org

There is another one in Massachusetts that I forget the name of, and our caseworker from Catholic Charities told us about a place in Baltimore, MD (I forget the name of that one too) that takes kids w/autism who have severe behavioral problems, puts them through an intensive ABA program for 3-6 months, and then sends them home again.  We’ll be looking into that too.

If anyone knows anything about any of these programs or places, or knows of any other ones (the closer to Albany, NY the better), please share whatever you know.  The more informed we are, the better.

The snow is so pretty outside my window at work right now.  I’m going to just stare at it for a while and try to forget that I’m searching for a place to send my precious boy away.

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