The heinous among us

If you know someone with a disability then you know there are people in the public and private sector who willfully make and support decisions denying equal rights to people with disabilities (PWD).  Decisions and policies that put peoples homes  and lives  at risk, deny, reduce or take away services that allow PWD to attain their maximum level of independence, send them out of state for sub-par care; in short, treat them as something less than human.

I do not understand how one human being can treat another human being like they are little more then feces and sleep at night. People who treat people like this are the misguided heinous among us and should be exposed and held accountable at every turn.

Some in the private sector see us (I live with a disability) merely as a way of making money. We are revenue streams, nothing less, and certainly nothing more. Not long ago there was a phone conference in my home state of New York among various parties involved in the state’s Traumatic Brain Injury Medicaid Waiver. The idea of allowing family members to act as home staff and get paid for doing so came up, the argument being that the presence of family, of loved ones in someone’s care, can help in the rehab process.

Some in this phone conference, including providers, thought this was a good idea. However, another provider complained that allowing family members this role would mean he would “lose hours.”  While I will not name this person, I know him. He told me once he had considered becoming a monk and, as far as I know, attends church on a regular basis.

Now, I’ve been an equal rights advocate for some time. I’ve never run across a government agency more ruthless and inhumane in its treatment of, in this case, people with brain injury disabilities, than Andrew Cuomo’s New York State Department of Health.  If actions speak louder than words, they do not care a wit about the lives of New Yorkers with brain injuries.

First of all, those in the DOH who oversee the TBI Waiver program and write the TBI Waiver Manual have absolutely no formal training or formal education in the brain. Not one iota. When I recently asked Deputy DOH Commissioner Mark Kissinger for the names of those in the DOH drafting the TBI Waiver manual, he would not tell me. Finally, a FOIL request pried the names from the DOH’s secretive claws. Who are those drafting the manual? Kissinger, Maribeth “Knuckles” Gnozzio, Lydia Kosinski, a DOH attorney and a member of the office staff. Not one of them has any formal training or education in the brain.

Along with the DOH, New York has the Traumatic Brain Injury Services Coordinating Council. Advocates for people with brain injury disabilities are waiting to see if, under its new leadership, the TBISCC will, finally, hold the DOH accountable, present real proposal to the DOH, and publicize all the council is doing online for all to see. It has been repeatedly suggested to the TBISCC that it create its own facebook page and or start its own webpage. This has not happened, yet, but if they are as sincere as we are hoping, these webpages will appear.

The TBISCC was formed by an act of the New York State Legislature in 1994 to ” to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.” One need look no further than the council’s minutes to confirm the DOH’s lack of interest in doing anything to respect and grow the lives of NYers with brain injuries. Consider this. Not once, in 20 years, has the DOH asked the council for input on how best to serve New Yorkers with live with brain injuries.

Some time ago a friend of mine was cautioned about me by a now retired individual who was in the field of brain injury: “Be careful he doesn’t turn on you,” she warned.  This individual knew at the time that I don’t “turn on” people. She also knew at the time that I will expose people or groups, private or public, who are denying people their rights, treating people as if they are less than human. Such was the case with this person. She was once part of a committee drafting a proposal on behalf of people with brain injuries when other committee members pointed out there needed to be people with brain injuries on the committee. She said this was not true. There was no need for people with brain injuries, after all, she explained, she spoke for them.

Rubbish.

The heinous among us. The greatest justice we can do ourselves and them, is to bring their behavior into the light, expose them. Whatever discomfort this might cause them is nothing compared to the torment and suffering their putting PWD through, and making a living doing it.

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