Category Archives: disability rights advocates

Love for Patricio

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When I learned this week that Patricio “Pat” Figueroa Jr. had died, it felt as if the air left the day. I was gutted.  He was 63, much too young to be leaving the world in my book.

Pat was, in so many ways, an extraordinary human being. Testimony to this can be found, in part, when you pause to consider the fact that I only met him once, several years ago, and yet, here I am, thoroughly staggered by his death. Granted, we had quite a few phone conversations, I write for Independence Today, the national disability rights newspaper he published. Our conversations ranged over all kinds of areas, including our love for New York City’s Lower East Side, a place where we both lived.

So what was it about this good and decent man that caused him to mean so much to me? I don’t know that I’ll be able to answer the question completely in this essay and I’m too damned sad to try. I can tell you that one of the reasons was his pure unfettered compassion for people and, in more than one instance, for me personally. He enjoyed reading this blog and after reading one piece that talked about my struggle to keep food on the table he told me the piece moved him to tears. The man knew poor, he knew struggle.

So here’s the thing, if Pat came to mean so much to me after so little time together, I can only imagine what those who knew him far better than I are going through. I’ve met his wife Denise and daughter Melissa.  I love them both too. In fact, only those who don’t pay attention would fail to love these three truly beautiful human beings.

I have no magic words to offer those deeply wounded by Pat’s death. What I can tell them, simply because it is true, is this: even death has its impotence. My father died when I was 15. For years I believed, on a thinking-level, that he was all gone. Then, one day, it hit me, he was (and is) present in my mind and heart on a daily basis. In a very concrete real way, he is still with me every day of my life. Death did not take the all of him away from me. Nor will death take the all of Pat away from those who loved him and love him still. He is not all gone.

pat figueroa

Pat Figueroa

I Hear I’m Controversial

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Sometimes a part of our truth can be right in front of us and we can’t see it. Case in point: I sheepishly confess that I was utterly entirely flabbergasted this morning when a friend of mine said, “Well, you know you’re controversial, Peter.”  It was, I’ve gathered since talking to others since this morning’s conversation, and enduring everyone’s laughter by the way, a rather prominent deer in the headlights moment for me. I instinctively responded by saying, “Why should equal rights be controversial?”

They are.

I asked them why they think I’m controversial. The theme of their answers was the same. You call out people, companies, agencies, government agencies on their actions or lack of actions. You don’t politically walk on eggs. You are deeply sensitive to all minorities and you don’t hesitate to identify those who persecute them, even when you know it is going to cost you. People know if you see people being mistreated you’re going to say it and name names. One person said, You drag things into the light.

Well, if that all makes me controversial then I’m glad I am. I was recently in a meeting where someone I respect a great deal said part of advocacy is about pushing the envelope.

One person said, Some folks hope you’ll just go away.  Those who hope I’ll just go away are those who through action or inaction support things that deny people their rights.

I know of too many people whose support for minorities like people with disabilities, Gays, Lesbians, blacks, Latinos, Jews, Muslims, Native Americans is cast in lip service and self-aggrandizement. Bad news for these folks. I’m not going away. I can’t. I’m controversial.

Actions Speak Louder than Words

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Actions speak louder than words. A cliché. When I was a boy my father reminded me there are reasons clichés become clichés, and the reasons are often good ones, which I believe to be the case with actions speak louder than words.

As one who lives with a disability, in my case a brain injury, I am weary of the many who offer up words of advocacy and support for brain injury survivors yet when it comes down to standing up to those who deny our rights they do nothing.  In the world of brain injury there are all kinds of people in the profit and non-profit arenas who, when it comes to taking a stand for equal rights, fail miserably. Too many who claim to care remain silent when they know brain injury survivors are being denied equal rights, real quality care and support, meaning, in part, that those providing the care are qualified to provide the services they are being paid to provide, paid with taxpayer dollars no less!

And so it is that this year my eye will be on the actions versus words arena. When the actions don’t match the words, I’ll say so. Yes, I know, I will upset some. I don’t care. Why should I? The ones I’ll be upsetting are the ones spewing lip service. They  don’t deserve caring, not when the rights of others are being denied and their silence and inaction makes them one of the forces contributing to the denial those rights.

Everyone and every organization is fair game. I am overjoyed that my state’s new governor has made it clear ethical standards are a must and in some instances in this state, they are severely lacking. True that governor.

It’s All About Respect

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In order for relationships of any kind to work, each person must be able to be who they are safely with the other. I’m talking about emotional, physical, spiritual, and intellectual safety. It is all about respect.

Too often people give up who they are to remain connected to another. It never works, at least not if happiness and fulfillment and your ability (and right) to be you is concerned.

Judgment is one of the primary poisons that can make being who you are risky business. People see the way you look or hear the way you sound and in the blink of an eye draw all kinds of conclusions, more often than not inaccurate ones. If you are black or Latino, Gay or Lesbian, Muslim, female, Jewish, and so on, the judgment flies. When I met my first wife she’d just left the high-paying field of modeling for a low-paying job in marketing. When I asked her why she’d made the change she said, “I was tired of people talking to my looks and not me.”

Judgment precludes respect. This holds true if you live with a disability as well.  I’ve seen people who for some odd reason conclude that people who use wheelchairs must be hard of hearing. People often draw the same baffling conclusion about people who are blind.

And then there is the number one well-founded complaint I hear from people with disabilities; we are treated as if we’re children. There is no respect in that.

Respecting others is rooted in a commitment to accept others for who they are, which requires being on the lookout for when a lifetime of inaccurate teachings may be skewing your view of another, including your view of your self.

Many of us are slaves to our histories and as a result do not see ourselves clearly. If you were raised being told you were stupid or ugly or bad you may still be under the grip of those damaging inaccuracies. Equally true, if you were raised being told you were better than  or smarter than or better looking than you too are under the grip of damaging inaccuracies.

Dare to discover your truth and the truth of others; doing so is all about respect, for others and your self. Others deserve the respect. So do you.

Note:  The title of this essay is the title of the book I am working on about my experiences in the field of brain injury.

NY State Department of Health Blocks Medical Treatment

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Whether you are intentionally blocking medical treatment or you are doing so because you are incompetent, it is cruel and inhuman treatment, particularly when the treatment is prescribed by the doctor and wanted by the patient.   When it’s the New York State Department of Health blocking the treatment,  heads ought to roll.

As I mentioned in an earlier blog post, “Those close to me are beginning to think, with some justification it seems, that the New York State Department of Health is not only purposely dragging it’s feet signing off on a life alert and some assistive technology its own RRDC has approved for me, but is, in fact, preparing to boot me off the state’s traumatic brain injury waiver.”  I went on to say that the jury was still out for me but after a careful review of emails ranging from February 2010 to October 23, 2010,  it is clear the concerns of those close to me are on target. The DOH behavior is either intentional or it is incompetence.

If it is the latter, as many think, it means there are people with brain injuries in this state who are enduring the same kind of neglect I am.

A Review, an Anecdote, and the Timeline

Review

My brain injury was sustained in 1984 when I was held up and shot in the head at point blank range. The bullet remains lodged in the frontal lobe of my brain with bone spray throughout the left frontal and temporal lobes. One of the things I’ve learned over the years both from living with the damage and from working in the field of brain injury for more than 15 years is this; the role the injury plays in one’s life changes over time. For the past six years or more I am unable to work a full time schedule of any kind, fatigue has become that much of a factor. Moreover, my sound sensitivity has become very pronounced over the years, so much so that I will often use a fan or an old white noise machine so I can sleep, read, write, at times concentrate on a conversation.

In addition to this, my health has changed. I have a heart condition called a blocked left bundle branch. The left and right bundle branches are your heart’s pacemaker. When one becomes blocked, it is not always clear why, it never becomes unblocked. Research says a blocked left bundle branch is potentially the more problematic of the two. In addition, I deal with asthma, PTSD, and an on again off again fight with depression.

At any rate, all of the previous realities, along with the fact I live alone in a rural area, led me, along with my case manager, doctor, therapist and loved ones to conclude I would be wise to bring two forms of assistive technology into my life: three white noise machines so they can be kept in various areas of the house so my quality of life and ability to comfortably function would improve and, of critical importance, a life alert, so in the event of a medical emergency I can get assistance with the mere push of a button.

Anecdote

Several years ago I was meeting with a group of brain injury survivors, there was about 20 of us. One of those in the group, a friend of mine I’ll call Terrence, had, like me, sustained his injury from a gunshot wound to the head. Terrence and I were facing each other, each sitting at one end of two adjoining tables. Someone raised the question of what we would do if anyone ever pulled a gun on us again, threatened our lives again. Terrence was and is a cheerful animated human being with a beautiful heart and soul, but now his face darkened. So did mine. Terrence said, “Next time someone threatens my life they better not miss  ‘cause I’m gonna try’n kill’m. I’m sick of it.”  We were heart and soul joined in this. Our eyes were joined as I said, “Me too.” In both of us, and those like us, there is a bone chilling electrified intimacy when someone tries to kill you, threatens your life.

There is a heartless cruelty found in the minds of those who knowingly put the lives of others at risk. And, I can tell you, some of what joined me and Terrence in that moment churns through my veins now as I experience a Department of Health that is knowingly putting me – and no doubt others – at risk.

The Timeline

See Information Key Below for Further information

  • Discussion of sound machines/life alert surfaces in emails, in Feb. 2010
  • Feb. 26 email referencing voice mail from Sue Williams, from CFDS saying they will help me get sound machines.
  • April 9 email to Jessica Pakatar from William Buse (my therapist) documenting need for sound machines and life alert.
  • April 12 email documenting first unpleasant conversation with Natalie Marabello in which she said Jessica Pakatar should reach out to Rob Korotich to make sure therapist email enough. Note: Marabello does not inform us a letter from an MD will be needed for life alert and white noise machines.
  • May 21 email documents conversation that day with Sue Williams in which she said Jessica Pakatar could work with someone in CFDS business office to order to obtain sound machines.
  • Circa late May we are told by RRDC office that all necessary documentation was in for white noise machines and life alert approval.
  • Two months later on August 12 email documents phone call with Rob Korotich who says Jeanette Biggs of DOH now says MD letter is needed for sound machines and life alert. This is Four months after April 12 conversation with Marabello.
  • August 12: approx date I filed a complaint with DOH via BIANYS complaint line re: Marabello’s earlier behavior on the phone and poor handling of assistive technology request.
  • August 12 email from me filing complaint directly to DOH complaining about handling of Assist. Tech request sent to: Mark Kissinger, Mary Ann Anglin, Cavallo, Jessica Pakatar – No response from DOH
  • August 18: Marabello calls to investigate assist. tech. complaint, announces she is aware I have active complaint against her but says she cannot investigate that complaint. I hang up on her when she appears to imply I am feigning need for white noise machines and life alert. I send out an email same day to: Mark Kissinger, Mary Ann Anglin, Maribeth J Gnozzio, Bill Combes, Sim Goldman, Marie Cavallo, Beth Cassidy, Jessica Pakatar, Maria Relyea, KAC Leadership Team notifying them of her behavior. – no response from DOH
  • Circa August 19 file separate complaint with Sunnyview Hospital, Marabello’s employers re: her behavior.
  • August 26, extensive telephone Interview with DOH’s Jan Koenig  re: Marabello complaint and assist tech. complaint.
  • Letter sent same day as above via email to Jan Koenig at her request documenting complaint interview
  • Sept. 7 letter from my Primary Physician documenting need for life alert & white noise machines sent to SC & DOH (RRDC)
  • Sept. 14, Jessica and I meet w/Marie Relyea and Wendy Tracy re: Marabello complaint filed with Sunnyview.
  • Sept. 28 email sent to Jan Koenig expressing concern that I have heard nothing about Marabello complaint – no response from DOH
  • Sept. 28 send letter to NE Health CEO Dr. James Reed seeking status of complaint filed against Marabello via Sunnyview
  • Sept. 29 letter mailed to NE Health CEO Dr. James Reed re: Marabello
  • Oct 4 RRDC signs off on assist tech and life alert and forwards to DOH for signature
  • Oct 6 email to Gnozzio asking about HEAP and food stamp contacts in county I am moving to – no response from DOH.
  • Receive Oct. 6 letter from Sunnyview CEO Edward J. Eisenman presenting their complaint findings. Send thank you letter the following day.
  • Oct. 6 email sent to Beth Gnozzio copying Mary Ann Anglin, Lydia Kosinski and Jessica Pakatar again inquiring about hold-up on sign off on assist tech – no response from DOH
  • October 7 email to Jan Koenig copying Mary Ann Anglin and Mark Kissinger inquiring about complaint status – no response from DOH
  • October 12 email to Beth Gnozzio copying Lydia Kosinski and Mary Ann Anglin again seeking status of assist tech request – no response from DOH
  • Oct 13 email from Beth Gnozzio saying she has made recommendations and under internal review; does not address assist tech.
  • Oct 13 email to Beth Gnozzio asking when  assist. tech will be signed off on – no response from DOH
  • Oct 14 email to Beth Gnozzio inquiring about sign off – no response from DOH
  • Oct 17 email to Beth Gnozzio inquiring about sign off – no response from DOH
  • Oct 19 Mary Ann Anglin resends Beth Gnozzio’s Oct 13 email referenced above
  • Oct. 21 email to Beth Gnozzio copying Mary Ann Anglin and KAC Leadership Team inquiring about sign off for assist. tech. et al – no response from DOH
  • Oct 22 email to Beth Gnozzio copying Mark Kissinger, Mary Ann Anglin, Lydia Kosinski, Carla Williams, Bill Combes, Sim Goldman, Marie Cavallo and KAC Leadership Team – letting them know another complaint now filed via BIANYS – no response from DOH

Information Key:

BIANYS: Brain Injury Association of NY State

CFDS: Center for Disability Services, Albany, NY

RRDC: Regional Resource Development Center: Agency under contract with DOH to oversee waiver providers and services in a region of the state

Mary Ann Anglin: DOH Director, Division of Home & Community Based Care Services

William Buse, LCSW, PhD: Therapist

Jeanette Biggs: DOH employee.

Marie Cavallo: President of BIANYS

Bill Combes: NY State Commission on Quality of Care

Edward J. Eisenman: CEO of Sunnyview Rehabilitation Hospital

Sim Goldman: Senior Attorney for Disability Rights Advocates, Albany NY.

Lydia Kosinski: DOH Assistant Director, Divison of Home & Community Based Services

Natalie Marabello: RRDS (Regional Development Specialist) working for Capitol Region’s RRDC

KAC Leadership Team: Leadership committee for Kahrmann Advocacy Coalition

Mark Kissinger: Deputy Commissioner, NY State DOH

Jan Koenig: Member of the DOH employee assigned to investigate assistive tech. complaint and complaint against Ms. Marabello

Rob Korotich: RRDS in the Capitol Region

Jessica Pakatar: My case manager/service coordinator through Catholic Charities Disabilities Services, Albany, NY

Dr. James Reed: CEO of Northeast Health

Marie Relyea: RRDS Capitol Region

Wendy Tracy: RRDS Capitol Region

Carla Williams: DOH Deputy Director Office of Long Term Care

Sue Williams: Director of Service Coordination for CFDS

Endnote

The Key’s content clearly documents the number of people aware of the DOH’s behavior. Nevertheless, the DOH does not sign off on my assistive technology request which has been deemed a medical necessity by my doctor and therapist and approved by their own RRDC. As a result, no white noise machines and no life alert which, in short, damages the quality of my life and puts me at risk. What is even more unsettling is this; if their treatment of me is not aimed at me personally, that means there are many men and women around the state absorbing the same neglect and thus being placed at risk.