Tag Archives: BIANYS

Remembering Frank Pierce

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Frank Pierce died three years ago today. The kindness and compassion Frank showed me and the many he loved and cared about was genuine and loving and sincere beyond description. Those who knew him knew a man whose caring and commitment to others, brain injury survivors and their loved ones were what I witnessed the most, was matched by few and outdone by none. He touched the hearts of those who knew him, including mine.
Not long after Frank died I was talking with his wife, Jane. I told her how Frank would say, Love you, brother, to me, and I thought it wonderful that was an expression he used with people. “No,” Jane said, “That was just for you.” Like I said, Frank touched my heart. He touches it still.
Frank left this world, but not our hearts, two years ago today. Having said that, I am republishing a piece I wrote on December 9, 2008, one day after Frank died. I loved and love Frank very much.

– Peter

LOVE YOU BROTHER

Remember to say I love you to those you love. I don’t know what it is about those three often maligned and misused words, I love you, that makes them as special as they are, but I do believe that when they are meant, they should be said. Not only to the many who deserve to hear it, but by the many who deserve to say it.

My friend Frank died at 7:35 yesterday morning with the two he loved and who loved him the most by his side. Like many others, I loved Frank. And whenever I’d say, Love you Frank, he’d smile at me and say, Love you brother. And I knew he meant it. I can still hear his voice saying those words to me, Love you brother. He meant them too, all three of them.

The words I love you are remarkably hard for some of us to say. For still others, they are difficult to hear. Still others avoid the phrase because it is has been used as a tool for manipulation and, in some cases, cruel manipulation, in too many scenarios.

However, I think the only necessary guideline for saying it is honesty. Say it if you mean it. Your history, those who betrayed you, used the phrase to manipulate you in one way or another, denied your ever hearing the phrase, none of these people deserve so much control over you today that they stop you from saying it at all.

A woman I love very much said to me recently, “Peter, you love everybody.” Not true. Not by a long shot. Rest assured, there are people I don’t love and there I even people I dislike, some intensely. But what I do believe in is letting those you feel love for know it. While there is certainly such as thing as too much hate in the world, there is no such thing as too much love. However, there is such a thing as not enough love – and not enough expression of the love that is there.

The first game the Yankees played after Yankee captain Thurmon Munson’s tragic death in 1979 was in Yankee Stadium against the Baltimore Orioles. The Orioles catcher was Rick Dempsey, a former Yankee and back-up catcher for Munson. The Yankee manager was Billy Martin. Dempsey sent a note to Martin in the Yankee clubhouse before the game. In it he told Martin that he, like so many others, loved Thurman and he, like so many of us, did not always remember to tell people he loved that he loved them. And so, in this note, he told Martin that he loved him.

And so if you love people in your life, whether you love them as friends or more, tell them. Use the words I love you – all three of them. I would ask the few of you who might feel saying I love you is a wimpy thing to do why saying it is so hard for you to do? Were it an act of weakness, to say them, it ought to be easy, no?

Take care of yourselves in life. Love each other as best you can. And when you do, say so.

I am going to miss you terribly, Frank.

Love you brother.

A win for all NY TBI Waiver Participants

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As a result of the relentless pressure brought to bear on the NY State Department of Health by the Kahrmann Advocacy Coalition, several sources across the state this week confirmed that last month the DOH  instituted a form letter that will inform TBI Waiver complainants of the results of their complaints.

The letter will identify the content of the complaint received, the fact the investigation was carried out, whether the complaint was or was not substantiated, and, if substantiated, the steps that were taken as a result. Moreover, if the complaint is about the Regional Resource Development Center – the RRDC is the agency contracted with the DOH to oversee the waiver in regions throughout the state which includes investigating complaints – or the investigation is not within the RRDC’s abilities, the complaint will be forwarded to DOH for investigation. This is a huge win for the advocacy community and for all New Yorkers who live with brain injuries.

KAC members who relentlessly pressured the DOH to institute a policy of informing complainants of the results of their complaints deserve the heartfelt gratitude of all who live with brain injuries and their loved ones. This change would not have come about were it not for their efforts.

It is also very important to make note the following. This confirmed information did not come from Deputy DOH Commissioner Mark Kissinger, nor did it come from anyone in the DOH in Albany. This is important to know for a few reasons.

  • It is very likely the last thing  the DOH in Albany wants to do is give credit to any advocacy group for this policy change.
  • It is very likely the DOH did not publicly announce the change because in doing so they would have to admit their policy of not providing complaint results has been unjust and immoral all along.
  • And just to fire a warning shot across the bow of the good ship DOH, don’t even think about linking this change to the fact the Brain Injury Association of NY State’s contract for answering the complaint line ended as of October 1. BIANYS was never the reason complainants weren’t informed of the results.  The sole responsibility for that inhumane policy rests squarely on the shoulders of the DOH.

NY State needs and deserves its TBI Waiver

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If you take a Rolls Royce, arguably the best made car on the planet, and put a lousy driver behind the wheel, the car is going to have mishaps, accidents, and probably have a tough time staying on the road. This does not mean you get rid of the Rolls Royce, it means you get a better driver. And so it is with New York State’s Traumatic Brain Injury Waiver. The TBI Waiver is an extraordinary presence in the state and, as one recent person commented on this blog accurately pointed out: “Without the comprehensive services (of the waiver and its) dedicated staff …survivors (of brain injuries) will be forced to live in nursing homes and out of state facilities. These folks will never have the opportunity to live – albeit with supports – as independently as possible in the community, rebuild friendships and relationships, and enjoy life as any other person would.”

The problem is not the waiver. The problem is the insular and dysfunctional staff at the New York State Department of Health who are dangerously mismanaging the waiver, along with a disturbing public silence in support of the waiver from groups like the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) and Brain Injury Association (BIANYS). I would urge both groups to publicly support the waiver and do so soon.

The TBI Medicaid Waiver came to New York in 1995 so brain-injured New Yorkers living in nursing homes oftentimes in Massachusetts yet paid for by New York dollars, could come back to New York and live in the community. The waiver also helped and continues to help brain-injured New Yorkers at risk for nursing home placement remain in the community.  It is worth noting too that it is less expensive for someone to be on the waiver than in a nursing home.

Time is very much  of the essence. The current behavior of the DOH (along with a well-fed rumor mill that says the state is looking to dump the waiver) is putting the lives of those on the waiver at risk; at real risk. Let’s not forget that a federal court had to step in and protect the life of waiver participant Francine Taishoff from the DOH. Let us not forget that the DOH was seeking to dump Ms. Taishoff from the waiver, charge her $24,000 in back housing subsidies, knowing full well that their actions would’ve probably rendered Ms. Taishoff, who is a senior with a brain injury, homeless, which may well have ended her life. Slashing housing subsidies with little if any explanation, holding off on signing service plans (waiver lingo for treatment plans) for inexcusably long periods of time, blocking waiver staff from supporting their clients at Medicaid Fair Hearings when their services or homes are being threatened, all adds up to a hostile, dangerous, and life-threatening environment.

It was worrisome when,  after publicly warning the TBISCC during their September 12 meeting that lives were at risk,  council chair Michael Kaplen immediately responded by adjourning the meeting, never mind the threat to people’s lives  and never mind that Mr. Kaplen’s term on the council, we later learned, ended in 2004.

None of us want to wake up one morning and learn that someone has died because of the behavior of the DOH; but it is the DOH, not the waiver that is the problem. If the waiver is not protected and better “drivers” placed at the helm, tragedy awaits. It’s inevitable.

This country was founded on the belief that individual freedom is an unalienable right. Freedom includes independence, and all people, with or without disabilities, deserve the maximum independence possible. To dismantle or abbreviate the waiver, rather than supporting it, building it, and giving it better “drivers,” would be the denial of freedom and independence which is, when all is said an done, about as un-American as it gets.

 

More on compassion, love & advocacy

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Three very thoughtful comments in response to the last blog post,  Anger, compassion, love, advocacy & BIANYS,  along with some equally thoughtful emails and phone conversations have helped me recognize it would be wise for me to write more about what one reader accurately summed up: “Your recent blog piece sounds like you are reviewing your advocacy tactics.” It’s true. I am and always try to with varying degrees of success.

All of us are wise to keep track of the patterns we find ourselves in. Sometimes it takes those close to us to point them out, and if we are centered enough, we can try on these observations and change accordingly without falling into the trap of clinging to old habits. John Steinbeck once wrote, “We are creatures of habit, a very senseless species.” How true.

I want to comment a bit on some of what I’ve read and heard in response to the last blog piece. But first  we must stipulate to the fact that the very act of holding people and organizations accountable may upset people. I can’t do anything about this. What I can do is advocate with intensity and tenacity and honesty and do my level best not to make anything sound personal. But, if leaders of various groups, government agencies, and others blatantly ignore those they claim to serve, I am going to say so. If organizations do not do what they tell people they do, I am going to say so. I have no other choice. One thing is very clear, things can’t go along business as usual when it comes to the realities currently being faced not just by brain-injured New Yorkers but by all people with disabilities in this state and beyond.

What I must pay close attention to is my contribution to the push for change. People in leadership positions must recognize and, in their choices, live the following reality: the Kahrmann Advocacy Coalition is not about Peter Kahrmann any more than the Brain Injury Association of NY State is about Judy Avner or Marie Cavallo, or the Traumatic Brain Injury Services Coordinating Council is about Michael Kaplen and Judy Avner. These groups are about and only about the people they are there to serve. And if any of us – including me! – gets too it’s-all-about-me, people around us need to call our attention to this and we need to listen and change accordingly.

Some things are not personal. It is not a personal attack for me to point out that Michael Kaplen and Judy Avner are sitting on a council even though their terms expired seven and eight years ago respectively. There is something not right about this and it needs to be addressed and I would point out this truth gives them the opportunity  to do what anyone – including me – in leadership positions must do – and that is recognize when we’ve fumbled or gone wrong and do the right thing. There is nothing personal about my pointing out that the council, certainly under Kaplen’s chairmanship, has failed to do pretty much of anything it was designed to do, and this is something he needs to reflect on, step down, and let others take the lead.  Upon hearing that George Washington stepped down after his second presidential term, King George of England said, “If Washington gave up power he is the greatest man on earth.”

Now, to the comments.

One person wrote in a beautiful statement about Marie Cavallo and I could not agree more. Marie has very much given and continues to give her heart and soul to the cause of brain-injured New Yorkers. It is true too that she is in a position where speaking what she really thinks is politically risky, and here is where, like me, she may want to do some reflection; is the “forced” silence worth the position? Only she can decide that. I love her no matter what she does, and I can say the same about Judy.

Another person wrote, in part, about the importance of establishing partnerships; they too are right. It is important (I am quite sure my correspondent knows this) that groups who form partnerships understand they are partnerships, meaning one group can’t simply say to another; you must accept everything about us as is, especially when some of the as is hinders or impedes equal rights for brain-injured New Yorkers.

Another person wrote in pointing out that BIANYS  is no longer the answering component for the complaint line, now the regional representatives for DOH will do that. Two things: this change does not change the fact complainants never get the results of their complaints and perhaps now BIANYS will be able to openly advocate that they do.

We are all works in progress – including me.

Anger, compassion, love, advocacy & BIANYS

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I am always surprised when I hear there are or may be people who are scared of me or perceive me as being a walking bundle of anger when it comes to my advocacy. Our view of ourselves never matches the way others see us and so we are fortunate to have friends and loved ones who are honest with us.

There are some who mistakenly believe I have some personal anger and dislike for people like Judith Avner and Marie Cavallo, executive director and president of the Brain Injury Association of New York State. The fact of the matter is I love them both very much and if word reached me tomorrow that life had wounded either of them in any way I would be there for them in a  heartbeat. The fact we have  some significant differences on other fronts in no way diminishes my love for each of them.

There is a fine line between holding people and organizations accountable as opposed to lashing into them with what comes across as personal anger;  and I am not about to pretend or claim that I’ve walked that line perfectly. I do know that my responsibility, a chosen responsibility, is to be honest with the world around me, which means being honest about what I know to be my flaws. I am not perfect nor will I ever be. I am deeply honest and deeply compassionate and I am deeply committed, right to the marrow of my very soul, to equal rights for all people – all people.

When it comes to equal rights, whether they be for people with brain injuries, blacks, Latinos, Jews, gays and lesbians, Asians, Muslims and so forth, it is not about me, and I can’t make my choices or write pieces here in this blog based on what I find emotionally comfortable or pleasing. On a deeply personal level I hate holding people I love like Judy and Marie publically accountable for things; my heart hurts over my current estrangement from BIANYS. I have had a relationship with them for many years.

BIANYS does certain things magnificently. They are the best educational  and information resource on brain injury in the state (It blows my mind that the New York State Department of Health doesn’t take advantage of BIANYS trainings for its staff who are involved with brain injury).  BIANYS has a grant from OPWDD (Office for People with Developmental Disabilities) that allows them to employ a group of people who are able to advocate for brain-injured New Yorkers if they received their injuries before the age of 18. The BIANYS staff who do this work are superb. However, BIANYS does  not have the staff and, in my view, because they do not want to risk losing a grant from the New York State Department of Health, will not publically hold the DOH accountable for some of its ongoing horrendous behavior when it comes to the TBI Waiver, and, as a result, does not publically advocate for people on the TBI Waiver, people  who sustained their injuries over the age of 18 and under the age of 64. Therein lies our differences; you can’t claim the mantel of leading advocacy agency for brain-injured New Yorkers in the State and remain silent when it comes to DOH behavior.

Now, about my anger, and yes, it is there, not as much as you might think but there are times, yes, I am angry. It is true that behind most anger is heartbreak, sadness. And it breaks my heart, deeply saddens me when I see brain-injured New Yorkers being treated by the DOH and others as if they are less than human, and, in some ways, as if they are disposable. And so I can’t remain silent, nor will I. All I ask is that people and organizations actually do what they say they do. No more, no less.

But let me say again; Judy and Marie are not my enemies, I do not dislike either of them. As I said, I love them both, very much. I hope as the days move forward some of the gap can be closed. We’ll see, it takes movement on both sides, one day at a time.