Tag Archives: BIANYS

Notes From an Advocate

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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.

_______________________________

Caring for Appearances and $ Only

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I have lived with a brain injury for more than 25 years now as a result of being held up and shot in the head in 1984. Since then I have met people who care and don’t about those of us who live with brain injuries. I’ve also met those successfully manipulate many, myself included, into believing they do care when in fact they don’t.

I can tell you from firsthand experience that those who work for the Brain Injury Association of New York State care with all their hearts and souls. They have helped me through some tough times over the years and I can honestly say I love the people who work there. I am proud to be a member and would tell anyone who lives in New York they are making the world a better place by becoming a member.

I know people in the New York State Department of health who care with all their might. I recently met with two DOH official who care and then some, so be careful not to write off government agencies and or employees as being absent compassion and caring. Moreoever, I know healthcare providers in my state and other states care with all their might.

I also know healthcare providers who don’t care. Who see us as a means of making money and or as a means to inflating their dysfunctional egos by seeking to and, in too many cases, succeeding in controlling our every move.

In my years of working with people with brain injuries I have worked with two company owners who both put on quite a show of caring. One, who has since passed away, I’ve come to realize really did care. Sadly, very sadly in fact, his personal demons got in the way of his acting on his compassion in a healthy way. The second owner continues to put on quite a show of caring but in fact continues to operate a program in which participants rights are too often not respected.

I was forced out of the latter owner’s place because I would not be quiet when I saw people with brain injuries being denied their rights. Do I hate this owner or the one referenced earlier? No. I hate the latter’s behavior and feel sorry for the arrogance that blinds him to the fact life happens to him too whether he likes it or not – just like the rest of us. Were he wounded in life, I’d help him.

Anyway, one day at a time.

I’ll continue to expose those who misstep on the human rights front and support those who don’t, and, thankfully, there are many people in the latter group.

Kahrmann Acceptance Speech

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Note to the reader:

On June 5 the Brain Injury Association of New York was kind enough to give me this year’s Ted Weiss Advocacy Award. It is the second time they have given me this award and I am deeply grateful. A United States congressman from 1977 to 1992, Congressman Wiess was an advocate, not just for his constituents, but for all people. He was particularly fierce in the arena of healthcare, not blinking when taking on shoddy health practices for veterans, in nursing homes and more. It is a humbling experience to have my name linked in any way to so honorable a human being as Congressman Ted Weiss.

At this year’s conference I gave an acceptance speech which has prompted an enormously positive response. It is one of the few speeches I actually wrote beforehand and it was recorded. In light of the intensely positive response, I am publishing the text of the speech here.

Ted Weiss 2009 Advocacy Award Acceptance Speech

Before I get started let me first tell you that my favorite movie is, It’s A Wonderful Life. In that movie there’s a scene where Clarence the angel tells Jimmy Stewart that every time you hear a bell ring it means an angel has gotten their wings. I have decided that every time I hear a cell phone ring, say, during a speech, it means an angel has gotten their wings. That’ll make it easier for all of us.

For me, advocacy is an allegiance to the one thing all of us have a right to expect – equality. Advocacy has to be a tenacious alliance with an individual or group when their equal rights are being threatened. We hold these truths to be self-evident, that all men – and women – are created equal, that they are endowed by their Creator with certain inalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

These rights – your rights – will die on the vine of hope if they are not given the water of respect and the sunlight of dignity. Your voice and mine play major roles in this task.

We’ve lost some extraordinary voices this year, a man I never met though I’m sure was deeply special, he was a drummer, Patrick Cavallo[1], and two who worked in this field, Frank Pierce[2] and Mark Ylivisaker[3]. Like many of us, both men knew the difference between those who really knew them and those who merely sought to use them. Neither man allowed the latter group to distract him from helping others. And, by the way, they’ve got their wings.

While it is true that time will still all our voices, I believe the voice of the human spirit lasts forever. The human spirit is alive and well in each of you: it lives in those of you who teach us you do not have to stand up to stand tall; it lives in those of you who teach us you do not have to have sight to have vision; and it lives in those of you who teach us you do not need hearing to know the sounds of injustice.

There will always be some who look to rob others of their equality because they are more concerned about fattening their wallets and thickening their bank rolls. I know there are people like this because I’ve met them and been wounded by them. I have heard their sweet sounding sugar coated words packed with arsenic. I’ll say one thing for brain injuries, I’ve never seen a fat wallet or thick bank roll protect someone from getting one.

Like other advocates, I have endured the efforts of those who would like to silence me.

But I will not be silent.

I will not be silent when I see anyone – any of you – being treated as if you are some form of diminished humanity. I will not be silent because what I am really talking about here today is freedom – your freedom and mine. The freedom to be who you are – safely – with equality – in the world you live in.

And when it comes to preserving our freedom, silence is never an option.

It is a wonderful life. Remember to live it. Many of you have earned your wings already.

Thank you, I love you all.


[1] Brother of BIANYS president, Marie Cavallo

[2] BIANYS board member, brain injury survivor, veteran

[3] Clinician know worldwide for his remarkable and innovative work with survivors of brain injuries.