With their hearts on my mind

I will be testifying today at a public hearing being held by members of the New York State Assembly about Governor Andrew Cuomo’s plan to demolish the lives of New Yorkers with brain injuries by moving them into managed care and annihilating the services they need and deserve to protect their independence – and keep their homes.

I’ve got plenty of motivation. In addition to my own brain injury, I live with a bullet lodged in my brain as a result of being held up and shot in the head, I know hundreds of New Yorkers with brain injuries. Incredible individuals who only ask for respect, and respect includes access to the care they deserve and the independence they have a right to keep.

  • I know a young man who suffered his brain injury in a car accident; he witnessed the decapitation of two of his friends during the accident.
  • I know a woman who one winter day was walking through a park with her husband pulling her two toddlers on a sled. A drunk snowmobile driver crashed into them. When this woman came out of a coma she learned she would never again move from the neck down, and she learned that both her children had died in the accident.
  • I know a brave woman who is a wheelchair user as a result of her brain injury, an injury caused by meningitis caused by a mosquito bite.
  • I know five good men who, like me, suffered their brain injuries from being shot in the head.

That’s just a sampling of the many survivors of brain injuries I know. I can barely see through the tears now as I think about them all, and contemplate the suffering  the Cuomo administration wants to inflict on them. I will testify today with the hearts of thousands on my mind. Not at all incidentally, the very people in Cuomo’s Department of Health who devised this plan openly acknowledge they know nothing about the brain or brain injury.

Now, there are some truly good people in the New York State legislature.  I’ve met them. I even believe in them.  I know too that to do the right thing for New Yorkers with brain injuries they will have to stand up to some intense opposition from a governor who many say is something of a bully.

I do not fear bullies. Not even a little.

I believe members of the state’s legislature have it in them to stand up and do the right thing. Consider the document below. It is the triage assessment of me the morning I got shot. The circled area says, in part, Patient walked into the ER accompanied by the police. Profuse bleeding from head wound. It was five in the morning when I got shot. When I regained consciousness, there was no one around. I got back to me feet and got myself help. So, if I can stand up and get myself help after being shot in the head at point blank range, I have no doubt members of the NY State Legislature have the capacity to stand up and do the right thing for New Yorkers with brain injuries. The question is, will they?


Cuomo’s dysfunctional Department of Health remains unchecked

An attorney for New York State’s records access office says the state’s Department of Health does not maintain records identifying how many New York State Medicaid recipients with brain injuries are placed out of state. A shocking admission given the DOH has spent roughly 1.5 billion of the state’s Medicaid dollars on New Yorkers placed out of state from 2003 to 2013.

In a March 21 letter responding to a FOIL (Freedom of Information ) request filed by this writer asking, in part, how many New York State Medicaid recipients with brain injury disabilities are currently placed out of state, Elizabeth Sullivan, an attorney for the state’s records access office,  says “the department [of health] does not maintain Medicaid data for those diagnosed with (brain injuries) as no such coding exists exclusively for these diagnoses.”

Just when you think it impossible for the state’s DOH to appear even more dysfunctional – and disingenuous – the DOH proves you wrong. There is ample evidence of disingenuousness when it comes to the DOH. One example would be a sentence in Ms. Sullivan’s letter to me: “Upon further review of your conversations with Mr. (John) Harper (of the state’s Office of Health Insurance Programs) this office has determined the following enclosed tables are responsive to your request.”  Kudos to Ms. Sullivan for a well-written sentence. One minor problem with its content; I never had conversations with Mr. Harper. As for the tables she references. They list the numbers of New York residents on Medicaid placed out of state but whether they have brain injuries or not is anyone’s guess.

Another example of the DOH’s disingenuousness is its public assertion that it cares about New Yorkers who live with brain injuries yet when those who are stakeholders seek to work with the DOH to improve the lives of NYers with BID, the DOH gives them the straight arm. The DOH recently took part in a phone conference with representatives from  the Brain Injury Association of NY State, the Center for Disability Rights, Disability Rights NY (the state’s protection and advocacy agency), the Traumatic Brain Injury Services Coordination Council (TBISCC) and the state’s Justice Center. It didn’t matter that the DOH had the agenda for a week, nor did it matter the agenda asked the DOH to clearly identify the number  of New Yorkers with BID placed out of state, and, clearly identify what support family members of those placed out of state could count on from the DOH. DOH representatives on the call provided none of the information sought. The DOH would not commit to a follow-up meeting with the stakeholders.

There is an effort underway to create an independent office for brain injury in the state. Good idea. But the current effort asks that the office remain in the control of the DOH. The very notion of the office being under the control of the DOH is a betrayal of New Yorkers with BID and their families. In truth, the office would be well-situated in a non-state agency, a non-profit that knows the plight of those who live with disabilities: CDR (Center for Disability Rights) would, at this point, be this writer’s choice. In fact, if the Cuomo administration wants to prove their claim of caring about individuals with BID is more than lip service (as well as his voiced commitment to ethics reform), then it should recognize that both the TBI and Nursing Home waivers  would be well-served under CDR’s leadership.

Over the past few years this blog has more than once memorialized the truly sickening mess that is the DOH. Examples abound: for 15 years plus  if you were a participant in the state’s Traumatic Brain Injury (TBI) Waiver and filed a complaint, the DOH never informed you of the results of your complaint. For 15 years the DOH’s most powerful person, when it came to the TBI Waiver, was Timothy J. Feeney, who then and now misrepresented his educational credentials, telling all the world he had a PhD and a Masters Degree when, in truth, both documents were issued by a now defunct diploma mill off the coast of Australia and were not and are not recognized as valid anywhere on planet earth.

Then, of course, you have the saga of Maribeth “Knuckles” Gnozzio. Knuckles, who wields enormous power on both the TBI Waiver and the Nursing Home and Transitions Waiver fronts, appears to have escaped federal prosecution thanks to a deal cut by her husband, Robert Janiszewski, who was convicted in 2002 of extortion and tax evasion by federal prosecutors. As this blog pointed out in January, Cuomo’s stated commitment to ethics reform is nothing more than smoke and mirrors if Gnozzio remains in place.  Reform “doesn’t seem to be on Knuckles Gnozzio’s mind. In 2010 she was the one who issued the verbal directive blocking waiver staff from advocating for waiver participants at Medicaid Fair Hearings, a move that has undermined the ability of many to truly represent themselves, which was Knuckles plan? Was it Cuomo’s plan as well? Or did he simply not know what his DOH was doing. He has known for some time now, and still not change. It was also Knuckles Gnozzio that directed that the housing subsidy this writer was receiving when he was on the TBI Waiver be taken away and it was Knuckle’s Gnozzio who led the effort to deny this writer a request for white noise machines secondary to sound sensitivity related to my brain injury. Gnozzio needs to go and, if Cuomo is telling the truth about his commitment to ethics reform, she will. If he isn’t, she won’t.”

It seems to me that the best thing that could happen for New Yorkers, in and out of state, who live with BID, is for the DOH to be removed from the equation altogether.

Preview: Proposal for NY State’s TBI Waiver: the Three Elephants in the Room

Although New York State is still reviewing it’s Traumatic Brain Injury Medicaid Waiver Program, one thing appears clear already, the waiver will be moved into managed care. The question is, will revisions to the structure of the waiver services  best serve the nearly 3,000 New Yorkers with brain injuries currently on the waiver, future waiver participants, and best serve the providers who are, in the majority of cases, trying with all their might to their level best?

The jury is still out.

Over the next week or so this blog will be offering a proposal that will be published in three parts. What will become of it will ultimately depend on several things: the commitment of government officials, the commitment of those who provide waiver services (the majority of them are superb, the question is will they be able to manage and, if necessary, expose the problem providers who are, thankfully, in the minority), the inclusion of people who live with brain injuries, their families, and advocates in the discussion, and, last but not least, the inclusion of persons who understand the brain: neuropsychologists like Albany-based Dr. Maria Lifrak, and neurologists.

Historically, this kind of inclusiveness has been missing.  And, while all parties say they are committed to providing the best services,  we all know that actions speak louder than words.

The waiver came to New York in 1995 as a result of the heartfelt efforts of people with brain injuries, their families, advocates, and, very much to their credit, health care professionals. It was clear then and even clearer now that many of us who live with a brain injury can, with varying degrees of support, remain in the community, and not, as all too often happened in the past, find ourselves tucked away in nursing homes. Furthermore, it costs less money to support someone in the  community than it does in a nursing home.

The phrase, the elephant in the room, is highly applicable here with a small revision: there are three elephants in the room. If the state truly addresses them, it will be able lift its head with justified pride, dramatically improve the services provided by the waiver, and save even more Medicaid dollars in the process. If the state, i.e., the powers that be, operates in a vacuum, meaning they might have held public hearings but the fix is in, life will get worse for New Yorkers with brain injuries, their families, and those who provide services to them.

Including all stakeholders in the program’s design (not just at public hearings) is a must. Doing so guarantees a program that will run with a higher degree of efficacy and dollars.


The Three Elephants

Elephant #1: Lack of knowledge about the brain on virtually all fronts.

Elephant #2: The New York State Traumatic Brain Injury Services Coordinating Council.

Elephant #3: Lack of effective oversight of those providing services to those on the waiver, a problem which is severely exacerbated by Elephant #1.


Next: Elephant #1


Note to reader: Please forward this blog piece and the upcoming proposal segments to all interested parties. Thank you!

An Update for My Readers

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.

NY State’s DOH Dysfunction Continues

There is no doubt New York’s new governor Andrew Cuomo has his work cut out for him in his push for ethical and accountable behavior on the part of state employees and state agencies. Evidence of the widespread dysfunction is certainly on display in the response I received in yesterday’s mail  to a FOIL (Freedom of Information Law) request I filed on December 12, 2010 seeking documents from the state’s department of health.

The December 12 FOIL request asked for the following (quoted directly from the request itself):

Any and all policies and procedures and any and all emails or other forms of written or recorded communications that are related to Medicaid Fair Hearings.

– Any and all policies and procedures and any and all emails or other forms of written or recorded communications that are related to the state’s traumatic brain injury waiver, the RRDCs ( Regional Resource Development Centers) and RRDSs (Regional resource Development Specialists) and assistant RRDSs and their role in Medicaid Fair Hearings

– Any and all policies and procedures and any and all emails or other forms of written or recorded communication that are related to directives from DOH (and or contract employees of DOH) that relate to TBI Waiver providers and their role in Medicaid Fair Hearings

– Any and all information that relates to DOH Policies and Procedures that apply to Medicaid Fair Hearings

And what arrived in yesterday’s mail as a response, a slim binder used to training fair hearing officers. A disturbing and seemingly disingenuous response to say the least. Upon reflection here is what is far more disturbing; I wasn’t surprised.

I’ve filed another, far more specific, FOIL request.

Stay tuned.