Kahrmann Coalition Meets with NY DOH Officials

In a wide ranging conversation marked by mutual respect and openness, representatives of the Kahrmann Consumer Advocacy Coalition met with Mark Kissinger, deputy commissioner for the New York State Department of Health, and members of his staff.

As founder of the KCAC, and one who will never blink when it comes to my support for the equal rights of all people, in this case, people with brain injuries and their families, today’s meeting very much appeared to be the beginning of what I suspect both sides hope will be an ongoing healthy dialogue.

The DOH said a newspaper article reporting that a hold had been put on the transfer of brain injury survivors consumers to licensed home care agencies was mistaken. While Kissinger and his staff  could not guarantee no consumers would wind up in nursing homes as a result of the transfer of services,  they assured us they were working on a daily basis with providers, focusing on each individual consumer, to make sure consumers are not going without the home and community support services they deserve. Moreover, the DOH said it is strongly discouraging nursing home admissions.

As for the timing of the late-December 2009 directive to providers requiring they transfer home community staff services to licensed home health care agencies in 30 days, Kissinger and his staff said waiver providers were told in 2006 that all agencies providing home and community services were required to be licensed home care agencies and, in 2007, were notified  of this requirement in writing. According the DOH, providers were directed to be in compliance by the end of September, 2009,  had that deadline extended to the end of December 2009, and then had that deadline extended another month.

A number of other possibilities were discussed, including, but not limited to:

  • Quarterly meetings between the KCAC and the DOH.
  • Quarterly meetings between the KCAC, the DOH and an alliance traumatic brain injury waiver health care providers.
  • Increase reimbursement rates for providers
  • The establishment of reimbursement for staff training relevant to the population being served.
  • Including KCAC members as unpaid participants on  DOH survey teams.
  • KCAC meeting consumers across the state in day programs offered by waiver providers.

As a civil rights advocate on all fronts: women, gay and lesbian, people with disabilities, blacks, Latinos, Jews, Muslims, and so on, and as one who lives with a brain injury, I, like many others, know only too well  what it is to be condescended to, or patronized. We were in no way treated like this by Mark Kissinger and his staff.  We were not condescended to or patronized, we were not rushed to end the meeting, and while all the answers were not every inch of what we hoped for, no question we asked was ducked or avoided. We were treated as equals. And that, no matter how you slice it, is good news.

Today was a good beginning for the relationship between the KCAC and the Department of Health. Next, we will be seeking to meet with the Providers Alliance and, of course, we look forward to a follow-up meeting with Mr. Kissinger and his staff.

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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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