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.
The Never Normal 
I am astounded they used the phrase “most restrictive environment” in that email. The idea of providing people with the least restrictive care possible at any given time is an important one in the mental health field. I’d be worried about a place that has that sort of perspective as in that email.
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In case you haven’t taken this step, it could be worthwhile to find the right computer whiz to do a deep search of years of newspaper stories about the schools you are wondering about.
Although records are protected, charges of abuse, mismanagement, etc. often make the papers, as do legal dustups such as the one about the Higashi School near Boston. There are stories about various charges, lawsuits, letters to the editor, etc. that can provide useful info.
Finding a person to do this digging might be a project a friend or relative could take on.
Source: http://www.usnews.com/articles/education/2009/08/05/when-does-physical-restraint-become-abuse.html
http://www.nytimes.com/2007/12/25/nyregion/25shock.html
http://leftbrainrightbrain.co.uk/2011/01/current-trends-in-autism-conference-april-29-30-2011/
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Thanks for the advice – something I’ll definitely pursue!
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Although the Current Trends conference (above) has a co.uk url, the conference will be in Boston, MA. The list of speakers and their areas of research and practice seems like a good resource for your files.
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Nursing homes have to keep their most recent NYS surveys on-site and produce them when asked for (It’s the law). Aren’t the places you’re researching similar?
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OK I see that that St. Colman’s denied the placement, but really. If they don’t see that their program would give Jonah the best advantage, then good for them to admit it. After all, they are experienced, and if they realize that admitting Jonah would not make it easier for you, as a parent, then good for them to say so. Plenty of places will admit you just for the money, funding, whatever, without taking into account the child and his or her overall life.
You will find a place that will suit. Don’t settle for second best.
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Hi Amy,
Been reading your blog since you sent me the link although I haven’t yet had a chance to comment until now.
I remember when I used to process FOIL requests, people had the option of coming in to our agency and going through what records were available (someone would still have to redact them, after the Legal Dept went through them to decide what was ok and what wasn’t) and then they could choose what ones they actually wanted copies of, rather than having to, say, pay $0.25 a copy for 1500 pages as you said. Another option would be to ask them if they can scan and e-mail things to you, when it’s a lesser amount of papers. They can’t charge you for redacting or for their time, only for copies they physically make you unless the law has changed. Bob Freeman, as you mentioned you have already been in contact with, would have the answer to that.
Just to let you know also that we all think about Jonah all the time, and Sam especially misses him and wonders if he ever asks for her! She is finally working again, phew!
Good luck,
Jen
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Many years ago CQC, (New York State Commission on Quality of Care) used to publish reports regarding problems at the DDSOs. I believe that CQC still receives federal Protection and Advocay monies. Perhaps they can assist with info on residential programs.
Good Luck
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