Because I am familiar with the story of Jonathan Carey (be warned: this is a YouTube video and a true story that will make you cry; I couldn’t even get all the way through it), I have been attempting to investigate recorded cases of abuse and neglect at residential educational placement schools. This has proven much more difficult than I ever would have believed. I started by writing an e-mail to Michael and Lisa Carey, Jonathan’s parents (I had actually spoken on the phone once before to Michael Carey, but he was days away from the election in which he was running for the NYS Senate and our conversation was brief).
Shortly after receiving my e-mail, Lisa Carey called me and we spoke on the phone for a while; she is more than willing to help me in any way she can. We listened to one another’s stories and she said she was shocked at how similar our experiences were – her son attended Wildwood School as well before being placed in a facility, and they went through similar nightmares as what happened to us in October. Lisa was very kind. She gave me her phone numbers and even offered to meet me sometime in person. I now know a lot more about specific facilities in this state and the possibility and likelihood of abuse, particularly toward non-verbal children, and it scares the living hell out of me. That being said, I know I am listening to the worst case scenario when I speak with Lisa so I am trying to stay calm and objective and research accordingly.
So I called Bob Freeman, the executive director of the Committee on Open Government, someone I know from working at a press association and meeting him at several of our conventions. He suggested I speak with the records access officer at OPWDD to learn more about FOILing records from their office regarding recorded cases of abuse and/or neglect from specific facilities across the state during specific time periods. He said if I did not get anywhere or needed more help that I should feel free to call him back. This man is a wealth of information and is also extremely helpful.
So I called the records access officer at OPWDD, who basically told me my request would be for a statement of deficiency and plan of corrective actions, which would be a tremendous amount of information (including citations for such minor offenses as a bedroom not being swept regularly) and would likely not contain the records I was looking for). She told me I was welcome to make the FOIL request, but that it could take a long time and be expensive as well; the records are not provided for free and only go back 6 years. She was kind as well, telling me she would look into it some more on her end and that I was welcome to call and speak with her on Tuesday. She then suggested I call the local DDSO and speak with them.
As soon as I hung up, I happened to get a phone call from the director of admissions of another facility we are considering, who had recently received Jonah’s paperwork from the school district and had some questions for me. I answered his questions and then flat-out asked him about cases of abuse and neglect at these facilities, and whether I could request these records directly from each facility. He told me that the facility itself would be unable to release such information to me; he cited a mental health law (I forget exactly which one now but am going to investigate) that protects privacy or some such shit. What the living hell? A law that protects the privacy of facilities that abuse and neglect developmentally disabled children?
Good God. Looks like I’ve got a lot of digging to do, and a lot of educating myself about the law.
I imagine I can, in the meantime, request referrals from these facilities – names of other parents of children who are living there. In fact I’ve been able to obtain a few with the help of Laurie, my favorite social worker at Wildwood (with the parents’ permission). I will be speaking to as many people as I can about all of these places.
This past week, two staff members from St. Colman’s came to visit and observe Jonah at school; evidently they were able to witness him both working (I think he was doing math) and attacking (he launched himself at the teacher and bit him, from what I understand), so now they know what they would be dealing with. We haven’t heard anything yet from them. Maybe they ran away and never looked back. <– sad attempt at humor.
Oh, and one of our cars is still in the shop with a blown transmission – evidently one came in but it was cracked so we have to wait some more – joy. I am going to help with Jonah this weekend as much as I can – I will likely take him to grandma’s or on a trip through his favorite mall (which was the sole topic of my February article for the Capital District Parent Pages, where I have a monthly column).
If and when and however I come out the other side of all of this, I intend to speak with every publisher and press connection I know, every government official I can find to listen, every bit of writing skill I have, to SHOUT and SCREAM and bitch and advocate for something MUCH better for all of the developmentally disabled.
The budgets are being cut on all their programs – the programs and services are shrinking – the pay for the hardworking caregivers is disgustingly low – the availability of help is disappearing…and just the opposite should be happening in all of these cases. I am going to do something about all of this ridiculousness or die trying.
Watch me.
Amy, you go girl!!! If anyone has the guts to do this it is you,no matter how drained you seem to be, you keep on going bound and determined. And I know it is the drive of a loving caring mother and human being. It is ridiculous that such information is not readily available to ALL!!! I just want to let you know too, that this week I saw Jonah at a few points at school where he seemed to have a smile on his face and was doing ok……it was a very nice sight to see. Hang in there kid…..as always prayers will continue for you!!!!
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I second Sue’s comment that if anyone has the guts to make former incidents of abuse at residential facilities transparent, it is you. I wonder whether your moral outrage, your intelligence, your writing and research skills and your tenacity are not a package of gifts given to you so that you can make a difference for all developmentally disabled children and adults in New York.
You may want to google New York Ombudsman for the Disabled and check out whatever help may be forthcoming from that office. In 2006 I lodged a complaint with the New Jersey Ombudsman for the Institutionalized Elderly against the assisted living facility from which my sisters and I had just removed our mother. As two nurses who were employed there told us, this investigation by the Ombudsman is a big deal. The director and head nurse shook in their shoes during the several days that the Ombudsman’s representative reviewed records and questioned staff and residents. The Ombudsman’s representative found the facility guilty of the charge I alleged and told me that she would be making future periodic, unannounced visits there to assure that current residents were treated properly.
Having done everything I could to protect current residents of that assisted living facility, I thought about how to alert families who might be contemplating that facility for a loved one. So I lodged a complaint with the Better Business Bureau of the county in which the facility is located. You might run residential facilities you are considering through the local BBB to check for complaints.
You go, Amy! I have a very strong intuition that in protecting Jonah from potential abuse, you will be protecting all developmentally disabled people. This is a BIG DEAL, a BIG, IMPORTANT DEAL! And I wish you all the lucky breaks in the world in your quest.
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Nightmares and red tape indeed. I have just watched the video and can see why you were reduced to tears. It is truly heartbreaking.
Some day in the future I have no doubt that yours and Jonah’s name will be among those listed as having made a difference. I wish you well with your research and can only stand amazed that such abuse happens and can continue to be allowed to happen.
We as a human race should take stock of what we pay our carers and what we pay our city bankers and our ‘so-called celebrities’ and redress the balance. A vain hope perhaps?
Take care 🙂
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You are an amazing mom and a wonderful adovate for Jonah. I know you will do all it takes to research and make the best choices for your family. Thank you for updating us and keeping it real!!
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Dear Amy,
You are going to hit a brickwall. Bring a shovel, a pick, and learn how to dig. Also look for a backdoor. Best way in.
EG: Trembling mother ran up to me a few years back at a local SEPAC Mtg. Her son was beaten at local Middle School
We get to her son, go to local emergency room get admitted, & deal with situation. Go to Police Dept for report, Denied-Underaged. Go to School SuperIntendent-Denied-Underaged, also I am not Legal Guardian of anyone involved. Call child I know in hallway-Got the whole scoop. Tah-Dah
Call Editor of Local Paper-Won’t speak to me. I’m National Media. No story on page one in 3 local papers. Police Chief, Local school board, Local gov’t bury story-bad PR Tourist season starts in 4 weeks-SSHHHHHH
Go back to scene of “crime” Ironically near “Diversity” banner hanging in school cafeteria. No one here practices what there preaching Peace, JCP
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Amy,
You are a pillar of inspiration for others to get involved and care about the heartwrenching events.
Your Jonah is precious and you are a most Wonderful mom. God Bless always. (abbreviated by Amy)
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