Category Archives: BIANYS

An Update for My Readers

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Since the birth of this blog in late 2006 this has been the longest stretch of “silence” on my part. I thought it might be a good idea to bring regular blog readers (there are more than 1,500 of you) up to speed.

As some of you know already, I recently moved to Berkshire County in Western Massachusetts. I am steadfastly going through box after box of my belongings, deciding what to keep and what to toss. It is astonishing how much stuff one accumulates over the years. I work on this culling process on a daily basis and, after careful calculation, have determined that I will complete it on April 15, 2032, at 2:07 p.m.

I have several times been tempted to write about New York State Governor Andrew Cuomo’s proposed state agency that would, or so the governor says, pursue allegations of abuse of people with disabilities in the care of the state. In my view the proposal is little more than a headline grabber intended to make the governor look good – or so he hopes. It is especially troubling when the 100 or so companies that came out in support of the proposal are, for the most part, the very companies that would be overseen by the agency. Disability rights advocate Michael Carey is spot on accurate when he said the governor’s proposal was an example of the fox guarding the henhouse. Carey’s 13-year-old son, Jonathan, who lived with autism, was killed while in the care of the state.

I advocated for people with brain injuries for years in New York State and, until recently, the state never informed people with brain injuries what the results of their complaints were. This withholding of information was by design, not by happenstance, and it serves to underscore Mr. Carey’s point.

If New York or any state is sincere about tracking allegations of abuse for those under state care, they’ll make sure it is done by an independent group. The fact the proposed agency would be a state agency serves to document the insincerity of the proposal.

Here’s a suggestion. If New York State wants to get serious about protecting people with disability in its care, an independent entity like the Center for Disability Rights out of Rochester might well be the way to go.

Enough on this – for now.

I’ve been back on my bike for the first time in a long time and it feels good. I live near Mount Greylock. At nearly 3,500 feet it is the tallest peak in Massachusetts and there is a road filled with switchbacks that winds its way to the top. The climb is about six and a half miles and I have every intention of biking that before winter arrives. I also have my eyes on a bike ride of about 50 miles to help raise funds for the Western Massachusetts Food Bank.

And, of course, I am reading, voraciously as always. I do not think I would have lived as long as I have without books. I mean this sincerely. They have provided refuge for me during difficult times and vacations for me during good times.

I’ve received a emails from people lamenting the fact I was not at this years conference hosted by the Brain Injury Association of NY State. I was not invited. BIANYS leadership does not like being held accountable, at least not publicly, and certainly not by me. There are good people on the BIANYS board and I think those at the head of BIANYS are essentially good people. But they need to humble up and realize that the world, meaning, in this case, the association, does not revolve around them.

I can remember some time ago when BIANYS leadership, to its credit, had a number of us who facilitated support groups meet to discuss ways of improving and growing the support groups. Nothing came of it. In fact, when I suggested that BIANYS take a page from the Brain Injury Association of Massachusetts and run background checks on group facilitators, the idea was immediately shot down by Judy Avner, the executive director, because, she said, it would be too costly. I pointed out, to no avail, that were a group facilitator to do something truly out of line somewhere down the road, not only would group members suffer, but, when it came to light that BIANYS willfully chose not to run background checks on group facilitators, things would be far more costly.

Enough on this – for now.

Those of you who know me and know my own struggles with my brain injury and PTSD will be happy to know I am getting out of the house more than I was a few months ago. I am, like you are, a work in progress.

It has been good writing this rather rambling missive to you all. I wish I could truly tell my regular readers how very grateful I am to you, and how humbling it is for me to know you read my writing on a regular basis. To those passing by, thank you for the visit. And to all of you, I hope life is treating you well, and always, always, remember to live.

And yes, I’ll be back.

Michael Kaplen needs to go

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If I could flip a switch that would completely remove one person from the world of brain injury, Michael Kaplen would vanish.

Apparently, the fact his term on NY State’s Traumatic Brain Injury Services Coordinating Council ended in 2004, coupled with the fact elections appear to be way overdue for the position of council chair, a post he clings to like Linus clings to his blanket, means nothing. The agenda released for the TBISCC’s meeting on March 1 (see below) reveals Kaplen has no intention of addressing either of these issues. One  hopes council members and the New York State Department of Health will hold him accountable, even though doing so may result in a Kaplen hissy fit.

Living with a brain injury is a formidable challenge and then some. But we are not the only ones facing tough challenges.  The challenges the New York State Department of Health  faces in it relationship to services for New Yorkers with brain injuries are formidable to say the least. So too are the intensely formidable challenges the Brain Injury Association of NY State faces in its work. 

But here’s the difference. When I talk with BIANYS leaders like Judith Avner, the executive director, and Marie Cavallo, the president, there  are things we agree on and things we disagree on. What all three of us have in common is this; we all truly care. When I talk with Mark Kissinger, Deputy Commissioner for the DOH, and Mary Ann Anglin, a division director for the DOH, there are things we agree and disagree on. But again, what do we have in common? We all care.

I don’t believe for a millisecond that Michael Kaplen cares. I don’t think he cares about anything but Michael Kaplen. I can also tell you that if you ever want to speak with him and can’t find him, just take out a camera and he’ll appear before your eyes in a flash. One particular rather self-serving behavior of Kaplen’s provides, perhaps, a clue to what he is all about. Past BIANYS board members as well as this writer remember times at board meetings that he would go around the table and place a business card – from his law firm – at each person’s place at the table. One year at the NYS DOH’s Best Practice Conference, at a time when Kaplen was the BIANYS president, a couple of us noticed that he was going around the entire room, which seated 1,000 people if not more, placing business cards from his law firm on each and every table. To this day he may not know that I went around the room and, with the help of an ally, removed nearly all the cards.

It will surprise few, if any, that when the BIANYS board voted on a well-designed ethics policy, every board member voted in favor, except for Kaplen. He chose to abstain.

In my opinion, Kaplen is a bully. I have seen him threaten to embarrass every member of the BIANYS board of directors because there were some who had an opinion that differed from his. In fact, his behavior was so nasty,  the board had to break so some members could gather themselves. One board member, a woman with a brain injury who was at her first meeting,  was so frightened by Kaplen’s behavior she was shaking.

In one of the first TBISCC meetings I attended I watched an exchange between Kaplen and Mary Ann Anglin. Ms. Anglin was asking a series of perfectly reasonable questions. Kaplen could not have been more unpleasant or acted more put out if he’d gone to Actor’s Studio  to master the display of both conditions.

At another TBISCC meeting an American Veteran in attendance who lives with a brain injury asked a question of a presenter. The veteran was immediately pulled up short by Kaplen who sternly explained that now was not the time for him to be asking questions. When, moments later, two council members offered to give their time to the veteran so he could voice his question, Kaplen yelled at them. Like I said, he’s a bully, and like most bullies, he’s a wimp.

Kaplen has also taken his runs at me. A few years back he represented me (with significant help from another attorney behind the scenes) in a case against what was then called the NY State Crime Victims Board. On one occasion I left him a voice mail with some questions. He then left me a voice mail angrily telling me not to ask him stupid questions (this from a man whose law firm claims to act with compassion towards people with brain injuries). Then, when the judge had the case under review, I left him a message telling him that whatever the judge decided, we needed to talk to determine how best to roll out our response to the media.

Can you guess how I found out the judge ruled in our favor? A reporter called me to ask me my response to the ruling. Who told the reporter? Right. Kaplen. And so, I decided to have some fun. I left Kaplen a voice mail. In it I told him that he should be grateful that it was not 25 years earlier because had he done this back then I simply would’ve taken him outside and slapped the sh*t out of him. He later whined that I’d threatened him. No, I explained, I did not threaten you. I simply explained what would’ve happened to you 25 years ago, so, be happy; you’re a lucky man.

The world of brain injury in New York is not lucky to have Michael Kaplen in their midst. It is my hope the council will stand up to his bullying and cut him loose.  If they do, then we can all be lucky together. And then, we can all focus on the difficult challenge of supporting each and every New Yorker with a brain injury in their just quest to reach their maximum level of independence.

****

As promised:

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

875 Central Avenue, Albany, New York

(Main Conference Room)

Thursday, March 1, 2012

10:30 AM – 3:30 PM

AGENDA

10:30am – 10:45am Welcome

Introduction of New Member

Review and Approval of Minutes from

September 12, 2011 Meeting

10:45am – 12:00pm New York State Five Year TBI Action Plan

Carla Williams, Deputy Director, Division of Long Term Care, NYSDOH

12:00pm – 1:15pm LUNCH (Members on their own)

1:15pm – 2:00pm Impact of MRT proposals on TBI and NHTD waivers:

Medicaid Managed Care and Repatriation of individuals served out of NYS

Jason Helgerson, Deputy Commissioner, Office of Health Insurance Programs and NYSDOH Medicaid Director

2:00pm – 2:30pm Coordinated Medicaid Managed Care Program for Individuals with TBI

Joseph Vollaro, PhD.

2:30pm – 3:00pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:00pm – 3:30pm Public Comment/Summary/Next Steps/Adjournment

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.