Notes From an Advocate

The last thing you encounter as an advocate is a shortage of dishonesty. It comes at you from every direction.

As readers of this blog know, the New York Department of Health has directed anywhere from eight to 18 agencies across the state to transfer brain injury survivors living in the community from their care even though many of the providers have adhered to all DOH requests, even though the lives of the survivors will be brutally disrupted and traumatized, and even though some survivors will likely find themselves back in nursing homes because there are no agencies in their area to pick up the slack, and even though the DOH has not talked to the survivors about this.

DOH Deputy Commissioner Mark Kissinger and his staff held  a telephone conference yesterday with the leadership of the TBISCC (Traumatic Brain Injury Service Coordinating Council). The TBISCC is headed by Michael Kaplen (former president of the Brain Injury Association of NY State and a man who has fought hard for the rights of brain injury survivors for years) and comprised of a group of people whose hearts and souls are committed to fact that all people living with brain injuries deserve a chance to reach their maximum level of independence. While I was not present at the meeting, I can tell you from firsthand experience that Kaplen and Council members advocate for survivors with all their might. So does the Brain Injury Association of NY State.

During this meeting Kissinger told the council that something along the lines of 63 brain injury survivors would have their lives disrupted by the DOH directive. He is misinformed or lying. Sources tell me more than 100 survivors in the New York City area alone will be effected by this and there is non-NYC provider faced with having to discharge 50 survivors. In other words, the number of brain injury survivors who will have their freedom of choice, meaning their independence ,meaning their rights as American citizens denied, is probably in the hundreds, if not more.

Yesterday morning I called Kissinger’s office and spoke to a person named Sheri. I told her that as head of the Kahrmann Advocacy Coalition I wanted to schedule a meeting with Kissinger and do so before we say, organize a sit-in in the lobby and bring the media. She said she would get back to me and she did, by email, later in the day, saying they were working on putting together the “phone conference” I requested with Kissinger. I wrote back reminding her – as if she needed reminding – that I did not ask for a phone conference, I asked for an in-person meeting.

As to why this is all happening? Here’s a thought. The DOH directive (see recent blog pieces for more complete explanation) will likely send quite a few people back into nursing homes. Given that some areas of the state will be left without agencies to provide community support staff, other survivors won’t be able to be discharged from nursing homes. Take these observations and connect them to this one; NY’s Nursing Home Transition Waiver is designed to allow people to leave nursing homes and return to life in the community. Is is possible this directive will short circuit that? If so, would it not be reasonable to ask if maybe the Nursing Home Lobby is behind all this?

Anyway, more notes to come. Keep the faith.



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