A Denial & A Memo

 The Denial

It came as no surprise today when I received a notice from the New York State TBI Waiver denying my request for white noise machines and a life alert. 

Never mind that I live with significant noise sensitivity secondary to the brain damage and never mind that I live with brain damage, a heart condition, PTSD and asthma and, by the way, live in a rural area far from a hospital. Never mind that my physician and my psychotherapist wrote letters documenting that the requested items were medical necessities.

What is clear is that the denial I just received, and similar denials being issued across the state, more often than not include every form of reasoning except the best interest of the brain injury survivor.

The denial was, I suspect, issued by some so-called medical director, who, in all likelihood, knows little about brain injury, never reviewed my records, never talked with my doctors or, perish the thought, me.

There are, as some of you may know already, a dramatic increase in fair hearing requests across the state in response to survivors of brain injury receiving notices that they are being kicked off the waiver,  or having their services reduced or  cut altogether.

Will I be asking for a fair hearing, a form of appeal provided by the law?  You bet.

More to come.

Memo to DOH

Early in  his first term President Obama said, “Sunshine is the best disinfectant.”  He meant that bringing things into the light, into the open, creating transparency, was the best way to shed light on dysfunction and wrongdoing, make it more difficult to engage in shady backroom deals. This sunshine also brings into the open the fine things that are being done, the hard working efforts that people and agencies and companies do make. Yesterday’s blog post praised Sunnyview Rehabilitation Hospital along with Natalie Marabello for ultimately handling a complaint in class way rich with integrity. Which is, more than can be said of the DOH, which is still reviewing the same complaint and has a complaint line protocol that does not require it to even respond to the complainant.

Over the years, in public and in private,  my stance has always been the same. If individuals, groups, companies or government agencies make decisions that truly protect the equal rights of people with disabilities (and all people by the way) and  assure that those who work with us are supporting our quest for independence, I will openly praise and support you.

If, on the other hand, there are individuals, groups, companies or government agencies making decisions that deny our equal rights and deny our right to achieve independence then I will, after private attempts at communication fail, expose you every single time.  That’s what advocates do!

I know some do not like it when this blog brings things into the open. But some of those who don’t like it bear some responsibility for things appearing in the blog. Consider this: when attempt after to attempt to communicate is not responded to,  what should the person with the disability do? Fall silent? If we do, then we are allowing the lack of communication to still our voices, and that is the last thing that should happen.

Silence has no place in this – sunshine does.

One thought on “A Denial & A Memo

  1. Peter, You might want to check with your local Department of Social Services (DSS) about the Lifeline. In the past, if a person received Personal Care Services(PCA), even for just a few hours a week, through the DSS they were allowed to have a lifeline installed in their home, and, I believe, paid for by Medicaid. I realize that you are on the TBI Waiver and that some of the rules may have changed regarding waiver participants and HCSS/PCA services. However, I highly recommend that you contact your local DSS, briefly explain your serious medical history and current unmet needs, especially about the medically-approved lifeline, and see if they can help out. You might also want to try calling the 800 telephone number for Medicaid or Medicare (if you have it) to see if they will cover the whitenoise machine. Then, if you find out that you can get one or both of the aforesaid machines from one or more of these other sources, I recommend that you discuss it with your SC and/or the RRDS beforehand just to make sure that it wouldn't impact your TBI Waiver services in any way. I sincerely hope this helps. Best of luck!


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