NY State DOH Sinks Lower

I’m not the first to think someone couldn’t sink lower only to be proven wrong. In my Medicaid Fair Hearing today the New York State Department of Health, represented by RRDS’s Maria Relyea and Robert Korotitich, proved they will sink as low as it takes  to prevent a brain injury survivor from getting the support he or she needs, and they’ll mislead and change the rules as they go to serve their purpose.

Today was the Medicaid Fair Hearing I asked for because the DOH denied my request for a life alert and three white noise machines.

Let’s review. All parties agree that the subject of my getting white noise machines to help me manage a marked sensitivity to sound and a life alert was first raised in March 2010, nine months ago. By June of 2010 all documentation was in and we, my case manager and I, were told the letter from my therapist supporting my request was enough. Months pass with no news and then the DOH changes its mind and says the therapist letter is not enough, we need a letter from a medical doctor. A letter from a medical doctor supporting me was provided.

On October 4 – seven months after the request was first made and four months after all the paperwork was in – I received an email from Rob Korotitich saying all the documentation I needed to justify my request was in, they were approving it and sending it on to DOH for signature.

In late October I receive notice that DOH has denied both requests.

Then, on November 10, I have a pre-conference with Relyea, Korotitich and my service coordinator, a remarkable person named Jessica Pakatar from Catholic Charities. A pre-conference is a standard way for parties to meet and try and resolve differences which would negate the need for a Fair Hearing. In the middle of the conference Relyea and Korotitich announce they didn’t realize it was the pre-conference (despite their having confirmed they were attending the pre-conference in response to an email I’d sent them two days earlier on November 8). However, in this meeting they said if I fully explained my medical condition it may help get the life alert request approved and if I had more evidence of my sound sensitivity it might help on the white noise machines front.

And so we provided yet another, far more extensive letter from my doctor, one that detailed the brain injury, chronic asthma and a heart condition and mentioned the fact I live alone in a rural area. We provided letters from people who know me and have witnessed firsthand my struggle with sound sensitivity. We provided documentation from the Mayo Clinic and the Arizona Center for Advanced Medicine documenting the prevalence of sound sensitivity in brain injury survivors as well as documentation from a military site talking about the prevalence of sound sensitivity when there is the combination of brain injury and PTSD. Moreover, Kristin Weller from the Brain Injury Association of New York State was there and provided an overview of the prevalence of sound sensitivity in brain injury survivors.

All this was not enough to satisfy the DOH. Maria Relyea, who lost all my respect for her today,  said the life alert had to be tied directly to the brain injury and that the other medical conditions were not relevant because I’m on a brain injury waiver. I asked her why the DOH had waited until now, the Fair Hearing, to make this point and why hadn’t she made this point during the pre-conference? No answer.

She went on to say that even with all the new sound sensitivity evidence provided there still wasn’t enough justification for the sound machines. There should be an assessment made, she said (never mind they’ve been provided three assessments, one by my therapist and two by my doctor). Once again she was asked by me why they’d waited until now to bring this up?  Now they wanted some kind of assessment, the specifics of which Relyea could not identify, even when asked to by the judge.

Then, Relyea questioned the need for three white noise machines (which had been explained in the letter from my doctor as being needed for different areas of the house). We think that might be a duplication of services, she said, which no doubt got her the prize for achieving the most juvenile and asinine moment of the day. Bad math too. To follow up on the asinine reasoning trail, it would be tripling the services, not doubling. It’s three machines, Maria, not two.

Christine Waters, the attorney for New York State’s Commission on Quality of Care,  accurately pointed out that the DOH was just raising the bar every time we met their requests.

I’ll be notified of the Fair Hearing results by mail in a few weeks.