Category Archives: New York State Department of Health

It’s About the Ethnic Cleansing, Stupid

Posted on by
Reply

“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.”

Now Is Not The Time

Posted on by
2

It is safe to say I am not the poster boy for patience these days. Things I’d normally let roll off my shoulders are being snapped at.

There are a few stressors at the moment. I have to leave where I am living as a member of my landlord’s family needs the home. My landlords have, for these past nine years, proved themselves to be the greatest landlords in the world.  I am also on disability with a sprinkling of money here and there for writing along with the occasional speech; there is a reason there is no fancy car in the driveway. Truth is I wouldn’t want one anyway no matter the state of my revenue.

Thinking I was moving to Herkimer County New York we switched my NY TBI Waiver benefits there and now, given that the deal for the house we’d hope to buy looks to be dead in the water, I find myself without rent or utility subsidies and despite the fact I may be moving to a place close to my current home, I am dealing with a state Department of Health that will likely make it impossible to regains the subsidies. Those of us on the TBI Waiver are having their services sliced and diced and, in too many cases, entirely denied  by a DOH that essentially creates regulations on the fly and doesn’t even follow what few regulations they have set forth in the manual they wrote.

Moreover, because of the presumed move to another county, there are, for this month, no food stamps. So, a for man who has  been homeless before, hospitalized twice for hunger pains, the pressure is on. While intellectually I know I will not wind up homelessness, I think it fair and accurate to say that once you have experienced real homelessness in your life, its specter is always near. Along with this, my body, normally an ally, has paid the price. Nights are fairly packed with back spasms which strike sporadically throughout the day as well.

This too shall pass, as they say and I know that. I have been reading some good books, having, I am ashamed to say, started reading John Dos Passos for the first time this year (a staggeringly brave and brilliant writer).

Having said all this, now is not a good time for someone to give me any grief. Some years ago someone I was working with said, “You’re a tough guy you know.” I was mortified! To me tough guy meant bully and not only have I never been a bully I have always been the one who has looked to take on the bully. I took my mortification to my friend and sister in my heart, Judy.

“You got a minute?” I asked.

“Sure,” she said, sitting down, smiling.

“Am I a tough guy?”

“Tough guy?”

“Yeah. Tough guy. Like in bully.”

“You’re not a bully, no. But you are a tough guy.”

“What do you mean?” More mortification.

“You don’t take any shit from people.”

Now that I could live with. And it’s true, I don’t take any shit.

Especially now.

NY DOH Wounds Rights of Brain Injured

Posted on by
1

Reliable sources say the New York State Department of Health has told TBI waiver staff that they must side with the DOH and against their clients when their clients appeal decisions made by the DOH in a Medicaid Fair Hearing.

A Fair Hearing affords people the chance to contest a DOH decision. As regular readers of this blog know, the DOH recently denied this writer’s request for white noise machines and a life alert.

Sources say the DOH Legal Department claims companies and individuals approved to provide waiver services are under contract with the state and therefore it would be a conflict of interest if they were to side with the brain injury survivors, the very people they are supposed to serve. Asked what options waiver staff have if they disagree with the DOH’s decision, sources say waiver staff can help survivors find community advocates to appear with them at the hearing.

The denial of my request came in the form of a letter from the Capitol Region’s Regional Resource Development Center (RRDC).

RRDCs are contract employees of the DOH who oversee those who provide and receive Traumatic Brain Injury Waiver services in their region. The TBI Waiver is an array of services that helps brain injury survivors live in the community. TBI Waiver Providers are companies and individuals who provide these services. Service Coordinators are providers who act as case managers and work with waiver participants in identifying  the services and developing the treatment plans that best serves waiver participants. Essentially, the Service Coordinator is the quarterback of the treatment team that works with and for the participant.

This legal directive was, according to sources, presented to RRDCs across the state in monthly conference calls facilitated by DOH employee Beth Gnozzio. Ms. Gnozzio has developed a reputation on several fronts for not responding to emails or phone calls.

The directive itself appears to violate the DOH’s TBI Waiver manual which reads, in part, that waiver participants must “Receive support and direction from the Service Coordinator to resolve (their) concerns and complaints about services and service providers” The directive’s rather apparent conflict with the manual does not stop there. The  TBI Waiver manual  says (bold is mine): “An individual has the right to seek a Medicaid Fair Hearing for many reasons including issues related to the …TBI waiver”. The manual also says brain injury survivors will “Have your service providers (to) help protect and promote your ability to exercise all your rights; identified in this document”, the document being the manual itself.

How on earth service providers, comprised of service coordinators and, for that matter, all waiver staff, can help protect and promote the survivors ability to exercise their rights, one of which is the right to a fair hearing, while at the same time they are being told they must stand against the survivors in a fair hearing is beyond me.

A Dangerous Combination

Posted on by
2

What is becoming increasingly clear is the absence of regulations, the absence of clear cut policies and procedures, leadsto chaos and chaos leads to suffering. I am talking here about New York State’s Traumatic Brain Injury Waiver which is overseen by the state’s department of health. While recent posts have detailed the kind of callous treatment I’ve been enduring at the hands of the state’s DOH, I am not alone. Many are going through the same kind of experience throughout the state.

To date there are more than 50,000 readers of this blog and from time to time some of them take me to task, sometimes harshly. But, to their credit, their opinions are driven by the search for truth, a justifiable desire to hold me accountable, and, at times, a straight-up  difference of opinion. In other words, they hold my feet to the fire and sometimes when they take me to task, they are right. I’d be a fool to be anything but grateful to them, and I am. Very.

What is markedly absence from my readers when they take me to task is lip service. They say what they mean and mean what they say. The substance of their honesty is refreshing. They are a lesson in the absence of lip service, a lesson that ought to be learned by some in the department of health and even some in the advocacy community who say all the right things but do nothing. After all, we are talking about people’s lives, the quality of their lives and, in some cases, their ability to keep their lives.

A Dangerous Combination

The absence of regulations coupled with a penchant for lip service is a dangerous combination.

Some weeks ago I met with three DOH officials: Deputy Commissioner Mark Kissinger, Director of  Division of Home & Community Based Care Services Mary Ann Anglin,  and Deputy Director of the Office of Long Term Care Carla Williams. Truth be told, I genuinely like all three of them. Mr. Kissinger certainly seems to be a good and decent man whose heart is in the right place. Ms. Williams is an extremely sharp refreshingly no-nonsense individual and Ms. Anglin is an extraordinary thinker and communicator.

There are, however, two things (among others) that an advocate has to be careful about. One, as an advocate you can’t allow the fact you dislike someone or that someone dislikes you to drive your decisions. Conversely, you can’t allow the fact you like someone or that someone likes you to stop you from holding them accountable. Advocacy is not pain-free.

During this meeting Carla Williams said the state’s TBI Waiver is the best of its kind in the country. Well, a couple of things. Certainly having a waiver is far better than not having a waiver. No argument there. But, if New York’s waiver is the best in the country, that doesn’t say much for the waivers in other states, because New York’s waiver, which is absent any clear regulations, is, sadly, a minefield of dysfunction.

The Providers Alliance, a group of about 40 companies that provide waiver services has clearly documented that no clear-cut billing policy for waiver providers around the state exist and this has proven highly problematic and costly, both for the providers and survivors.

There have been instances, for example, when a doctor will issue a written order directing that a survivor needs staff to be with him or her throughout the day. The provider is compelled to, wants to and does provide the staff right away. The problem is there are times the DOH has not signed off on the service and may not do so for weeks, which means the provider may not get reimbursed for the service they’re providing.

To its absolute credit, the Providers Alliance has provided the DOH with a carefully thought-out series of recommendations to improve the unwieldy TBI Waiver manual (I’ve seen their work, it is superb), yet there has been no real response to their efforts. Curiously, the TBI Waiver manual lists six indexes, none of which are present in the manual!

Moreover, the DOH is informing quite a few survivors of brain injury around the state that there services will be cut and, in some cases, discontinued all together. The problem here is these decisions are being made by people who have utterly no understanding of brain injury, much less any real working knowledge of the human brain.

 

Actions Speak Louder than Words

Once when I was a boy I complained to my father about the fact some phrase was a cliché. My father, the greatest gift life has ever given me by the way, smiled and said, “Well, Pete, there’s a reason they become clichés.”  He was right.

Which brings me to the cliché, actions speak louder than words.

So, let’s compare Words versus Actions:

Words: The TBI Waiver manual provides a list of participants rights on Page 6, one of which reads says participants must “Be treated as an individual with consideration and respect”.

Actions: Waiver participants, including this writer, are having their services cut, reduced or delayed by the DOH without warning and, in my case and certainly others, without explanation. Moreover, requests for explanations are largely ignored. Consideration and respect?

Words: Participants must  “Be treated as an individual with consideration and respect”.

Actions: Capitol Region RRDS Natalie Marabello implies this writer is feigning the need for a life alert and white noise machines and further implies that he is wasting her time. Result? Ms. Marabello is promoted to Lead RRDS. Consideration and respect?

Words: DOH officials insist they will decide whether to approve requests for things like life alerts and white noise machines along with other forms of assistive technology and, in some cases, mediations, on the merits, and, in this effort ask for documentation from doctors supporting the request.

Actions: This writer and others across the state have requests in from assistive technology with the required letters from both a doctor and psychotherapist, the RRDC has signed off on the request and the DOH still does not sign off on it. What form of measurements, specifically, does the DOH use to determine the merits?

Words: One section of the participants rights in the TBI Waiver manual reads, “Have your complaints responded to and be informed of the resolution.”

Actions: The waiver complaint line protocol between the Brain Injury Association of NY State and the DOH not only fails to set forth any time lines within which a complainant must get a response, it fails to mandate that a complainant get a response at all.

The point is, all parties need to get together to resolve this, the DOH it seems has a penchant for behaving in a rather insular fashion, and this serves no one’s interest, unless of course we are talking about  Social Darwinism and all that drives the DOH is a desire to be the big kid on the block.

My hope is that all will come together and resolve all this, because in the mean time, survivors, families, and providers are suffering.

 

 

 

NY State Department of Health Blocks Medical Treatment

Posted on by
1

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.