Tag Archives: BIANYS

It’s About the Ethnic Cleansing, Stupid

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“What are they doing to us?” one young woman asked, her one functioning hand gently twirling a cup of coffee on the worn Formica table top.

“Anything they want,” came the reply, this from a short narrow man with kind wide-set blue eyes, a baseball cap perched on his head.

“It’s like we don’t exist,” the young woman returned, lifting and finishing the last of her coffee. “I was in college before my stroke. Twenty-four years old and a stroke. Go figure. Now look at me. Fat from meds, in a wheelchair, and now I got people saying maybe I shouldn’t get the support I need cause I don’t need it.”

Max, sitting quietly listening, unfolded and refolded his Daily News. For reasons known solely to Max, there was comfort in the act of folding and refolding the day’s Daily News. He had no interest in reading it. Never did. It was simply that the act brought comfort. Why, he was not entirely sure. And in the nuts and bolts of it, he didn’t care why. He was just glad it made him feel better. Looking up at his friends, all, like, him, survivors of brain injury, he said, “The fix is in.”

Martha, an older woman with dark chocolate skin, sharp clear brown eyes, shifted the position of her wheelchair, said, “Max is right the fix is in.”

Dolly’s eyes wet up. “What fix? What’s in?” She began to breathe hard. The young woman reached out and touched her shoulder. “Easy, Dolly, it’s okay.” They all knew Dolly had frontal lobe damage, after all when a drunk driver loses control of his car and runs you down, the front of your brain is bound to take a pretty hard whack. Sure enough. And they all knew that Dolly got upset race horse fast because her frontal lobe couldn’t modulate her emotions like it did in the past. It wasn’t like the damage drove all her emotions like this. Mainly fear, sadness and humor. Sometimes Dolly got to laughing so hard at something she couldn’t stop, and she had one of those infectious laughs so attempts to slow her laughter were, more often than not, overtaken by the inexplicable urge to join in and soon you had a table full of people laughing and that’s never a bad thing.

“It’s okay, Dolly,” Max said. “What I mean is it ain’t about helping us be safe or in the community, its about either they can make money off us, some folks are like that anyway, or, like now, when the government wants to save money, they toss us back into the sea and don’t give a shit if we swim or not.”

“My Daddy taught me to swim when I was three,” Dolly said, her wet red face now lit up with a smile.

“See,” Martha said, “you’re better off than you thought.”

“So what are they doing to us,” the young woman said, returning to the table with a refreshed cup of coffee.

“Looking for any excuse to cut our services or throw us off the waiver in the first place,” Max said. “It’s pretty much a version of ethnic cleansing. I read once that ethnic cleansing is "the planned deliberate removal from a specific territory, persons of a particular ethnic group, by force or intimidation, in order to render that area ethnically homogenous." Well, what do you call what’s happening. The ethnic group is us, we’re be tossed off services or denied services altogether, the Department of Health does whatever the fuck it wants, and what’s the result, we’re gone and only the non brain injured are left. Like I said, the fix is in.”

Martha nodded. “You here about that guy upstate. They denied him the waiver. My sister knows him, Freddie I think his first name is. Fell of a building when the scaffold broke, fell two stories.”

“Did he die?” asked Mort, always inclined to drift in and out of conversations, rarely getting the whole gist.

“Yeah, Mort, he died,” cracked Max. “And still he ain’t hurt bad enough for them to help him.”

“Fucked up,” said Mort, smiling, not at all minding that he’d missed the point, glad to be with his friends who loved him and he them.

“They said he didn’t have a brain injury,” Martha explained. “The RRDS said he had to get a neuropsych. Never mind his neurologist and neurosurgeon gave all kinds of records proving he’s brain injured.”

“What he do?” the young woman asked.

“Got the neuropsych. Neuropsych said yeah he’s brain injured and yeah he needs the waiver and the RRDS said not good enough and now they guy’s shit out of luck.”

“Like I said, the fix is in.”

“So what happens to us?”

“We hope we don’t get caught up in this ethnic cleansing.”

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.

 

The TBI Waiver: Seeking a Household Unified

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New York State’s Traumatic Brain Injury Waiver came into existence in 1995. Essentially it is an admirable Medicaid program that offers a set of services that help people with brain injuries remain in the community and, not incidentally, costs far less money than keeping people in nursing homes.

Recently I am hearing some deeply disturbing  things, including, but not at all limited to, the following:

    • Survivors of brain injury are being told their services will need to be cut by contract employees of the New York State Department of Health who are not experts in the field of neurology and therefore would appear to be making decisions they do not appear qualified to make.
    • There is a service offered by the waiver called Independent Living Skills Training. According to the DOH’s waiver manual ILST “services may include assessment, training, and supervision of, or assistance to, an individual with issues related to self-care, medication management, task completion, communication skills, interpersonal skills, socialization, sensory/motor skills, mobility, community transportation skills, reduction/elimination of maladaptive behaviors, problem solving skills, money management, pre-vocational skills and skills to maintain a household.  ILST services are individually designed to improve the ability of the participant to live as independently as possible in the community. ILST may be provided in the participant’s home or in the community. This service is provided on an individual basis.”          However, I am hearing that survivors are having their ILST services cut against their will. Now I am sure that were one to look closely at those receiving ILST services there may very well be cases where services should be reduced, or stopped altogether. However, the problem, and it is a potentially dangerous one, is that the decisions to cut these services appear to again being made by people not qualified to make them.
    • There is another waiver service called CIC, Community Integration Counseling. CIC is essentially talk therapy designed to help a person living with a brain injury come to terms with living life with brain damage. Now I am hearing some survivors are being told to turn to the mental health community for their counseling. Again, dangerous. A brain injury is an injury, not an illness. Period.
    • I have also had some reports that some New York DOH contract employees are saying the waiver was never meant to be a permanent support for people with brain injuries. First of all, that is disingenuous, secondly, brain injuries do not entirely heal, and there are lifelong deficits some of us live with that will require support for us to remain in the community.

Now, I would be wrong to villainize the New York DOH as a whole. Like all government agencies that are under pressure to cut costs. All the more reason they deserve advocates standing with them against any and all forces that continue to put the quality of lives and the lives themselves at risk. Therefore all parties need to be at the table: the New York DOH, the Kahrmann Advocacy Coalition, the New York State Brain Injury Association and the Providers Alliance, a group of  40 or more waiver service providers.

Everyone involved in regulating and providing services as well as advocacy for people with brain injury should be at the table looking to remedy things. No one party, including the DOH, should be made or choose to go it alone.

Lincoln was right when he said, “A house divided against itself cannot stand.” A household unified can stand and then some.

 

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Tim Feeney, John Mccooey & NY State DOH

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Sources say Belvedere Brain Injury Program owner John Mccooey may be behind an effort to get Tim Feeney another contract with the New York State Department of Health to again oversee the Neurobehavioral Project for the state.  State officials are looking into the matter. Belvedere has sites in Albany and Syracuse.

Tim Feeney had three consecutive five-year contracts with the NY DOH to oversee the Neurobehavioral Project despite the fact his doctorate and masters degrees are bogus, not recognized as valid anywhere in the world. In his last years under contract, Feeney and Mccooey worked closely to develop a substance abuse program for Belvedere that, sources say, continues to deny participants choice and in some instances locks the doors when workshops begin, telling participants they will not be allowed back in if they have to use the bathroom or go for a drink of water.

Feeney is currently under contract with the Fort Ann School District in Washington County New York  to work with children, including children with disabilities and is again representing himself as Dr. Feeney or Tim Feeney PhD. School officials, including Fort Ann School Superintendent Maureen VanBuren, have been told about his bogus degrees but it seems they are continuing to work with Feeney anyway, the welfare of the children be damned.

Some Background

On more than once occasion I have been asked what led me to investigate and  Feeney’s credentials, or, as it turned out, his lack thereof.  Some think it is because when I was forced out of Belvedere, John Mccooey said Feeney made him do it. First of all, by the time Mccooey told me that he had about as much right to claim the mantel of honesty as Willie Sutton had to a job as bank manager. Mccooey’s finger pointing at Feeney is not what led me to investigate the on again off again rumors that Feeney’s credentials were, in a word I feel comfortable using in this blog, bullshit. What led me to investigate his credentials was a change in his, Feeney’s, pattern of behavior.

One of the things they teach you in behavior management is that a change in a person’s common behavior pattern means something. In 2007 it had become clear that my advocating for the rights of those participating in Belvedere’s Albany substance abuse program was going nowhere. Participants were being talked to in degrading ways by Belvedere employee Michael Loiselle, they were being denied choice as provided for in the regulations and in their rights as human beings, and John Mccooey was doing nothing about it. At the time I had a close relationship with Pat Green Gumson and Bruce Rosen in the Department of Health. I reached out and let them know that there were real problems and something needed to be done. Feeney and his crew were sent in to deal with the problems. Historically, when the DOH caught wind of participants being denied their rights, they corrected things. Not this time.

This time the punitive rights-denying behavior of Belvedere was supported. There had been a change in Feeney and the DOH’s  normal pattern of behavior.

And so now we are looking at the possibility of Feeney being reinstated and a dysfunctional company owner named John Mccooey being involved.

Equal Rights Will Prevail

Yes, it is disheartening to encounter people like Mccooey and Feeney who apparently see people with disabilities as a way to make money and make themselves feel big and strong (both men are wimps, by the way). But do not give up. There are in fact, some good people in the New York State Department of Health and there are some truly good people in the advocacy community who offer more than simply lip service to the cause of equal rights. I can tell you that in those rare moments when I get down, I remember Mandela, King, Elie Wiesel, Simon Wiesenthal, Rosa Parks, Gloria Steinem and countless others; God knows they paid heavier dues than I have. So no, I will never give up and I hope you won’t either.

Make Your Voices Heard

If you share my concerns you can make your voices heard by calling the complaint line at the Brain Injury Association of NY State – 518-459-7911 – the Commission on Quality of Care at 518-388-2887 or the DOH at 518-474-6580 or you can write to the Kahrmann Advocacy Coalition at kahrma1@gmail.com

Keep the faith.

____________________________

 

Kahrmann Coalition to Meet with NY DOH

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Members of the Kahrmann Consumer Advocacy Coalition are expected to meet with Deputy Commissioner Mark Kissinger and other New York Department of Health officials in early February in part to discuss concerns about a recent DOH directive to transfer injury brain injury survivors living in the community to agencies that may not be prepared take them and, in doing so, destroy relationships with agencies that have been providing effective care, in some cases, for years.

“We’re concerned that freedom of choice is being denied, that survivors may find themselves in places not equipped to support them and others may find themselves placed in nursing homes,” said coalition founder, Peter S. Kahrmann. 

Kahrmann, who lives with a brain injury as a result of being held up and shot in the head at point blank range in 1984, hopes the meeting will prove beneficial to all. “If they are talking with consumers and if this directive is being supported by consumers, that’s a healthy thing.  That’s not we’re hearing. Something simply being inflicted on consumers, not so healthy.”

Kissinger says agencies providing community support staff to 63 survivors of brain injuries will have to discharge their survivors to other agencies because they are not Licensed Home Care Agencies. Some of the agencies being asked to transfer people have been providing quality care for years with the Department of Health’s blessing.

Kahrmann said the Coalition has heard  the number of consumers being transferred exceeds the 63 reported  by DOH officials. “Right now the number we’re hearing is in the neighborhood of 150 people,” Kahrmann said.

The KCAC is a coalition of brain injury survivors, family members and other interested parties. “It is an extraordinary thing to see the coalition grow,” said Kahrmann.

Kahrmann said all coalition members are urged to become members of the Brain Injury Association of New York State. “They are the centerpiece for advocacy in the state,” he said.

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Note: People interested in joining the KCAC can write to Mr. Kahrmann at peterkahrmann@gmail.com or write to, Kahrmann, P.O. Box 19, Westerlo, NY 12193

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