Category Archives: TBI

Ramblings From a Writer & Advocate

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My blog “pen” has been still for a time now and I am pulled back to this page because I feel a kind of welcome connection to the more than 1,500 people that read this blog every month. Any writer not humbled by that kind of attention is a fool. And, I’ve missed you all.

I’ve been fairly active. I’ve written three short stories recently and am, dare I say it, fairly pleased with them. I eyed the possibility of trading in my car for a new one and was reminded that if  you want honesty in your life, you’re not likely to find it in a car dealership.  But most on my mind, at the moment, is a recent presentation by several healthcare providers claiming to be experts in helping those who live with the dual challenge of substance abuse and brain injury. I don’t know all the players but two of the presenters were Albany-based Belvedere’s Brain Injury Program and Northeast Center for Special Care in Lake Katrine, New York.  One of the people from Belvedere explained that Belvedere’s counselors have sessions with survivors in their cars for privacy.

Those I talked to who attended were not only not impressed, they were horrified. Survivors of brain injuries were referred to as “those TBIs” – TBI stands for Traumatic Brain Injury – and one presenter said a survivor he knew had been a garbage man before his injury and so was probably special ed anyway.  No matter how you hold that disgusting observation up to the light, it is packed with bigotry. Survivors were talked about like they were products and, well, less than human.

Do these fools not realize that when you say all TBIs you’re spewing the same kind of bigotry as the voices who say all Blacks or all Jews or all Latinos or all gays or all lesbians? And don’t miss that the people who offered these presentations were picked by their company owners and leadership to represent their companies and, one would suppose, their views. Troubling, very troubling.

Anyway, it is good to be back. More soon. My best to you all.

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Kahrmann Coalition Meets with NY DOH Officials

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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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NY Department of Health Betrays Health Care Providers & Brain Injury Survivors

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More than 60 people with disabilities will have their lives brutally disrupted and in many cases traumatized as a result of a New York Department of Health that would rather hide behind labels than respect the people it serves.

Sources say DOH Deputy Commissioner Mark Kissinger says agencies providing community support staff to more than 60 survivors of brain injuries will have to discharge their survivors to other agencies (against the wishes of the survivors themselves in many cases) because they are not Licensed Home Care Agencies. Never mind that a number of these agencies filed their applications as requested and they’ve yet to get a response because of a plodding bureaucracy they have no control over.

While Kissinger’s point sounds reasonable, it’s not. The facts reveal that reason – not to mention equal rights for people with disabilities – has nothing to do with it. Kissinger’s response to this is reportedly, Don’t you think these people should be with licensed home care agencies?  Sounds good, but his assertion is nothing more than a political shell game. He and the DOH know full well that these agencies have been providing effective care for years and the notion that survivors are somehow are risk is, in a good light, misinformed and, in a poor light, disingenuous.

Some background. In 2007 the DOH informed companies providing community support staff to people with brain injuries through the TBI (Traumatic Brain Injury) Waiver – a form of Medicaid reimbursement – that they needed to become Licensed Home Care Agencies. Keep in mind that at the time, some of these companies had been effectively providing community support staff for more than a decade. The New York TBI Waiver began in 1995.  Nevertheless, the burdensome blanket of bureaucracy was draped over the providers and so many filed their applications, with, sources say, little if any guidance from the DOH.

Kissinger’s people didn’t bother to talk with any of the more than 60 people whose lives will be damaged by this. And the TBI Waiver, believe it or not, is supposed to be person centered, which means, in short, the person living with the brain injury is supposed to be in charge of their own life.

Sources say Kissinger said agencies with applications filed may still get approved to be Licensed Home Care Agencies and, if they do, their survivors can come back. It’s seems we survivors are absent our humanity in the eyes of the DOH. Just a bunch of inanimate objects to be moved about the landscape.

This blog would urge the survivors to ask for a fair hearing and it would also urge the providers to file suit against the DOH charging that this action is arbitrary and capricious and, if that move wouldn’t hold up, hold the DOH accountable for dropping the ball on it review of applications and hold them accountable.

And hey, here’s an idea, why doesn’t Kissinger himself meet with the more than 60 survivors. If you are going to work for a government agency that plans on pulling the rug out from under the lives of more than 60 people, why not meet them in person?

I am urging all interested parties to call the Brain Injury Association of NY State. As a former board member and a current member they are the state’s leading advocacy organization for brain injury survivors and a truly good group of people.  Their Family Help Line is (800) 228-8201 and their main line is (518) 459-7911. You can also e-mail them at info@bianys.org  While your at it, I would urge each of you to become a member if you are not one already.

Also, call Mark Kissinger’s office at 518-402-5673 and or e-mail him at mlk15@health.state.ny.us

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2010: Rethinking It All & Thanking My Readers

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By and large 2009 has been a rewarding year for me.  It’s had it’s blows but all years do, nothing new there. The readership of this blog has more than doubled from last year. At times more than 2,000 viewed these pages in a given month. While a large majority of the readers are from my country, there have been readers from around the world: Canada, Israel, Saudi Arabia, Great Britain, France, Slovenia, India, Korea, Ireland, Columbia, Romania, Brazil, Australia, Morocco, Norway, Paraguay, South Africa, Thailand, Taiwan, Luxemburg, Croatia, Spain and so on.

I cannot tell you how grateful I am to those of you who visit here, whether you are stopping buy one time or, like more than I ever imagined, you stop by regularly. You can be sure this blog will keep going. In fact, this is the 228th piece I’ve written for it this year alone.

This year has had some fine realities:

  • I am still sober and without my sobriety, none of what is wonderful in life would be available to me.
  • A workshop I began in early 2008 for survivors of brain injuries and others continues to flourish and will celebrate its second anniversary in early 2010.
  • My friendship with Michael continues to show us both we are brothers, and my love for my nephews: Vincent and Philip, and now Jay, is as powerful as can be. My love for Frieda, Michael’s wife of the heart, runs so deep she is, without question, family to me too.
  • I saw Tischa Toon,  my childhood friend, who I love very much, for the first time in years, met her husband, David, a beautiful human being, and saw pictures of their sons.
  • I have a group of wonderful male and female friends and am forever grateful.
  • The survivors of brain injury, their loved ones, and all others who come to my workshops and those I have met throughout this state are people I genuinely care about and, in many cases, genuinely love. Whatever good I may bring to their lives pales in comparison to the good they bring to mine.
  • My advocacy has done some good this year, I hope, and for those who know that streak in me, you can be sure it is as alive and well and as tenacious as ever.
  • I met Christine Mansfield in Cape Cod and fell completely and utterly in love with her. And just in case that wasn’t enough, I met her daughters, Emily and Anna, extraordinary young women in their own right, and love them both.
  • I am on the New York State Council on Independent Living and I can tell you that is one spectacular group of people.
  • Although on disability, life is wealthier than ever.

This year, like any year, has had its not so fine realities as well:

  • My friend Jimmy died too soon at age 57. There is a little less light in the world with him gone.
  • I met some who offered lip-service friendships with love and loyalty firmly tied to the foundation of hot-air.
  • While there are some positive signs and things may be looking up in my state for people like me who live with brain injuries, we are not out of the woods, and I and those connected with me around the state are paying close attention.

On the horizon:

  • There are some new steps on the advocacy to be taken this year, one is already underway, the formation of a statewide coalition of brain injury survivors so that we too will have a unified voice.
  • I will devote more of this year to writing than ever before and may cut back in other areas to do this.
  • I am quietly adding things to my bucket list and will be acting on them.
  • I will begin writing a piece this year revolving around my experience of my state’s relationship with those of us who live with brain injuries
  • And more….

In the meantime, please take care of yourselves and each other. Don’t forget to say I love you to those you love. They deserve to hear it and you deserve to say it.

And, remember to live. Thank you again for reading this blog.

Warmth and respect to you all,

Peter

The Frontal Lobe: Riding the Waves

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Emotion is the fuel.

Many of us who live with frontal lobe damage have to wait for a wave of emotion in order to get things done. Absent emotion, many tasks lapse into stillness. Years ago I worked with a young man  whose physical functioning made it impossible for him to manually power a wheelchair so a power chair was ordered. He’d sustained his brain injury from a motorcycle accident. The day his power chair arrived he was overjoyed.

Once he was situated in the chair I said, “Okay bro, rock on. Kick your injury’s ass.” He drove that chair out into the hall, made a right and drove down the hall a good 20 yards or so, navigating the chair beautifully. He then came to a stop. I caught up with him and said, “You can do it, don’t let the injury control you, go for it.” And off he went, but this time only half the distance he covered the first time. After a time, no matter what I said, he didn’t drive the chair.

Confused, I talked to a neuropsychologist.  She explained what was happening. “The emotion provides the fuel for the action.  It temporarily overrides the frontal lobe damage. As soon as the emotion fades, the injury takes over.”

And so it is that many of us who live with frontal lobe damage wait for those waves of emotion to get certain things done. I do this with my writing. There are all kinds of things I want to write, I’m working on three books for God sakes. But unless I can locate an emotional wave to ride, I can’t get myself to the writing table. It is the same with this blog,  I have ideas for essays, but unless I can locate an emotional wave, I can’t get them written.

Those who work with brain injury survivors need to understand this, if they want to be effective in their work. Too often I have heard those with the symptoms of frontal lobe damage referenced here referred to as lazy, which is brutally and abusively wrong. Laziness has nothing to do with it. The part of our brain that serves as the ignition to begin a task doesn’t work. While the engine is there, the ignition is not. Emotion is needed to hotwire the engine so we can begin the task, so we can ride the waves.