Break for freedom – Day 12 (Adding distance and hills)

Day 12 – Tuesday, August 22, 2017 (Adding distance & hills)

6:08 a.m. – Years ago, not long after the shooting, me and my close friend Dane Arnold belonged to the 23rd Street YMCA in New York City.

We used to play paddle ball as a pair against these two old guys who were so good they barely had to move to, well, basically wipe the floor with us. That’s not quite true, we did win some, lost more, and were always in the game, but they were far more skilled with their placement of shots, and the English they could put on their shots would impress Houdini. As always, I played with all I had which meant diving for a ball, crashing into walls in order to fire off a shot, and so on. On one occasion, after I dove for a shot and crashed into a wall, one of the older guys, smiling from ear to ear and laughing, asked Dane, “Does he always play like this?”

Dane said: “Are you kidding me?! He does everything like this. You should see him wash the dishes; it’s like he’s trying to get the pattern out of the plate.”

Now, my gentle reader, I know this may sound silly, maybe even a stretch, but I believe the same part of my character that plays that hard, or, to put things in sharper focus, the part of me that doesn’t like giving up, is the same part of my character that helped me stand up after I got shot.

Right or wrong, it sure as hell is the same part of me that’s decided to double the hills and the length this morning’s walk.

7:54 a.m. – Back home.  A shade over one mile: 1.1 to be exact. I am smiling. A long way to go, but this morning felt good. Still does!

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For Dane Arnold

Break for freedom – Day 10 (The bullet)

Day 10 – Sunday, August 20, 2017 (The bullet)

7:51 a.m. – Back home from my walk. I looked up around 6:40-something this morning and said: “I want to go out.” In short order, out I went into the early morning cool.

I did not get as sweat-soaked today. I think (I don’t want to say this too loudly) I may be beginning to carve away power from fear. If you happen to bump into fear at a social event, please don’t let on. Fear is quite the control freak, any sign that someone is breaking free of its grasp makes it angry.

For whatever reason, perhaps because this is the month I got shot, I found myself thinking of the bullet lodged in the frontal lobe of my brain during the walk. The brain has no nerve endings, so I don’t feel it. If I were to identify one disappointment linked to its presence, it would be this; I don’t set off airport alarms. I had plans of approaching an airport metal detector and bowing my head forward so it would be the first to thing enter its realm. My thought was, the bullet will set the alarm off, the inspector will point at my head and ask, “So whattaya got in there?” and I’ll respond, “You’re never gonna believe this.” But, alas, these detectors don’t detect lead.

The bullet has been part of my being for most of my life now, 33 years the 24th of this month. It has done its damage, and no doubt plays a role in my life, to some degree. It has its limitations. Name one, you ask? Sure. It couldn’t stop me from taking my morning walk today.

KahrmannHeadXray2.jpg

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For James Scott “Jim” Brady aka Bear

NY StateTBI Providers Alliance in Disarray

Nearly the entire board of directors for the New York State Traumatic Brain Injury (TBI) Providers Alliance  walked out late last year after learning two board members, the presidents of the Belvedere Brain Injury Program and Elder Choice, filed grant applications for their companies falsely claiming their applications had alliance support, said several former board members who asked not to be identified.

According to former board members, John Mccooey, president of Belvedere and Aaron Harris, president of the Elder Choice Home Care Agency, filed grant applications claiming they had the support of the alliance when nothing could be further from truth. Former board members say when Mccooey and Harris were confronted about this and asked to see the complete grant applications, Mccooey and Harris refused their request. Moreover, until this writer sent repeated requests for comment to Harris and Mccooey (neither responded), the alliance website  continued to list names of the former board members as if they were current board members. Within 48 hours of this writer asking for comment, the names were removed (months after the board members had walked out).

A look at the alliance website today lists several board vacancies.

All this is bad news for the many good and decent TBI (Traumatic Brain Injury) and NHTD (Nursing Home Transition and Diversion) waiver providers. The providers alliance was a great idea, a chance for providers to really work together for the common good of all. And, for a time, they did exactly that. However, former board members say the one-vote-per-provider rule was jettisoned when Mccooey and Harris stacked the room with their staff: Karina Davis-Corr, for example, is listed on the alliance website as secretary for the Syracuse Utica North Regional of the alliance; she is Belvedere’s executive director in Syracuse.

Former board members expressed disgust, seeing Mccooey’s and Harris’s behavior as little more than self-serving power grabs.  Two former board members said they’re quite sure Mccooey intends to control as much of the two state waivers as he possibly can. Two said they’d never work with Mccooey again. One former board member said Mccooey “was a bit loony.” Perhaps the gentlest review came from one former board member who said the work at hand was far too serious to be spending time with adults who act like children.

Needless to say (or perhaps not), the ones that will suffer the most are the many good and decent providers and the individuals who are or could be receiving services from the two waivers. A 2011 interview about the alliance with Aaron Harris  which can be seen on youtube is unsettling, in part because Harris tried and failed to define a TBI, saying the answer depends on who you ask. Not true. Here’s the answer. Acquired Brain Injuries are any brain injuries that occur after birth regardless of the cause. A traumatic brain injury is a subset of these. A TBI is a brain injury caused by external blow to the head: car accident, gun shot, fall, mugging…and so on. Strokes, for example, would not fall into the category of TBI.

As for Mccooey and Harris, both serve as  reminders that Abraham Lincoln was right: “Nearly all men can stand adversity, but if you want to test a man’s character, give him power.”

 

 

 

Backstabbing Cuomo & New Yorkers with disabilities

Examination of proposed changes to the by-laws for a New York State brain injury council reveals a state agency’s attempt to weaken a council, already in disarray, put the council under the state’s control, and weaken the current requirement that people with brain injuries and their families be fairly represented on the council.

The council was signed into being by former New York State Governor Mario Cuomo and the proposed changes are being proposed by current governor Andrew Cuomo’s department of health. It is reasonable to believe, given the current governor’s admirable efforts on behalf of people with disabilities to date,  that the DOH is engaging in practices that violate all Governor Cuomo stands for and all his father stood for.

Now, let’s take a look at these proposed changes.  In one glaring instance of undermining the council, the state DOH proposes removing the following clause from the bylaws in its entirety: “Assuring the appropriate consumer representation of persons with brain injuries and their families is represented in the activities of the Council.”  Were this to be removed the bylaws would in no instance include a requirement that there be ample and fair representation of people with brain injuries and their families on the council. One has to question the council’s willingness to oppose this, especially since the person still claiming to be the vice-chair, even though her term on the council ended more than nine years ago, Judith Avner, the Brain Injury Association of NY State’s executive director, is the very person who blocked persons with brain injury from being on a now defunct committee that was seeking to represent persons with brain injury.

Proposed changes on pages 3 and 4 of the bylaws would, if adopted, allow a  member of a state agency to be the vice-chair of the council (something the current bylaws appropriately blocks because the council is designed to be an independent entity) and the bylaws put the vice-chair in charge of the executive committee. This would allow the state to essentially take over the council, something that must be fought and resisted at all costs.  These proposed changes weaken the requirement for council members attendance (thus weakening the council) by allowing council members to miss two meetings over a period of two years without risking their place on the council rather than two meetings in one year as the current bylaws requires. The council is required to meet a minimum of three times a year,  in case you think the current meeting requirement for council members is too strict.

And then, the DOH proposes a weakening of council documentation. Current bylaws require that a written record of the meeting be mailed out to council members “within 30 days of a meeting.” DOH wants that requirement replaced with “as soon as practicable.”

As a July 5, 2011 post in this blog accurately observed, this council, called the Traumatic Brain Injury Services Coordinating Council, has never done its job as designed by the state legislature: “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is mandated to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.”” As this blog previously reported , “more than 10 years of TBISCC meeting minutes tell us the council” has “failed to come up with any real comprehensive proposals for the DOH”at all. Not a one.

History tells us this is just fine with the DOH. Over the years the DOH has proven resistant to any kind of real inclusiveness and input. On page 6 of the proposed changes, the DOH wants the word expert removed in a sentence that currently permits the council  (italics mine) “to provide technical and expert assistance to the Council…” Given the DOH’s resistance to input, one can only conclude the ridding themselves of having to deal with real experts makes it even easier for them to reject input.

The DOH has a history of being unfriendly to New Yorkers when it comes to brain injury. Before the TBISCC’s meeting last December, the DOH’s Cheryl Veith (who later said she was directed to do so by her superiors yet refused to identify said superiors) sent out an email that included this:

Executive Law 166
The Department of Health is required, pursuant to Executive Law § 166, to keep a record of those who appear before it.   All attending the meeting need to complete the attached form.  Below is the form that will need to be completed upon your arrival at the TBISCC meeting so it will save time if you complete it before you arrive. Please print the completed form and bring to the meeting.

Several problems with this: The form would require anyone attending to share the personal address and phone number. Second, the law doesn’t apply for two reasons. First, those in attendance are not appearing before the DOH, they are attending a meeting of the TBISCC which is an independent body. Second, the form is meant for lobbyists, not for members of the public who should not and are not required to hand over the personal information at public meetings.  And then, there is this: the TBISCC was perfectly aware of what the DOH was up to, and they said nothing.

This writer contacted Robert Freeman, head of the NY State Committee on Open Government, who confirmed that Executive Law 166 did not apply. Freeman called Deputy DOH Commissioner Mark Kissinger who agreed the law did not apply. Nevertheless, when this writer and others showed up for the meeting, there Veith was, trying to insist members of the public fill out the form.

The DOH and council’s penchant for stiff arming the public  is also revealed by the fact there is a TBISCC meeting this Wednesday, January 23, and still the council and DOH have not released the agenda. The meeting will run from 10:30am to 3:30pm in Meeting Room A of the New York State Museum in Albany.

There are a few bylaw revisions proposed by the DOH that do make sense. Limited the chair’s term to one year rather than two, and having elections by written ballot rather than voice vote. I would also suggest a term-limit clause permitting any chair and or vice-chair to serve no more than two consecutive terms, thus freeing the council from being under the grip of the rather dictatorial likes of former chair Charles Wolf and Michael Kaplen. The latter still claims he is the council’s chair even though his term as chair expired years ago.

Lastly, for now, there is this. Several council members are directly linked to BIANYS and BIANYS gets a sizeable annual grant from the DOH. Is it any wonder that the council has a documented history of not providing the DOH with anything mandated under the above reference Public Health Law? Is it any wonder that the council avoids holding the DOH accountable for some of its destructive behavior towards those with brain injuries who find themselves in the state’s TBI Waiver?

The problems at set forth here go all the way to the top of the DOH. This writer has sent several emails directly to DOH Commissioner Dr. Nirav Shah (and called his office several times) outlining the council’s problems. He has never responded. Never mind that the Kahrmann Advocacy Coalition has more members with brain injuries than the BIANYS has had in its entire history.

A proposal for NY State’s TBI Waiver: Elephant #1: Lack of knowledge about the brain: a Remedy

We have thus far identified the four parts of this proposal. In short they are the three elephants in the room and a summation with final thoughts.

Part 1:  Elephant #1: Lack of knowledge about the brain

Part 2:  New York State Traumatic Brain Injury Services Coordinating Council

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

Part 4: Summation and final thoughts

The proposal format for Elephant #1 is being published in two parts. The first part, the outlining of the problem or challenge, was published yesterday, and this is the second part, a proposed remedy to the issues outlined in part 1. I had thought elephants #2 and #3 would need to be addressed in two parts, but they may be able to be successfully addressed in one part. We’ll see.

Let me say that not for a minute do I think the remedy, as set forth here, is in any way perfect nor am I claiming that it can’t be improved on. It can, and it should be. What I believe is that the remedy I am about to describe here is a solid step in the right direction and, if it is applied, it will, in addition to dramatically benefitting the lives of those men and women with brain injuries currently on New Yorks TBI (Traumatic Brain Injury) Waiver and the lives of future waiver participants, save Medicaid dollars, a lot of them, to put it mildly.

Thus far I have, I hope, successfully outlined some salient points. First, as the current waiver molds into its new form, decision makers must be very careful not to discard the plethora of waiver staff and others (RRDCs) who have, over time, developed an understanding of the brain and brain injury that is rare in general and rare in the over-worked folds of managed care companies. Second, anyone providing and or monitoring/regulating waiver services must be trained and deserves to be trained to a level of expertise that is currently sorely lacking. Third, there can be no doubt that truly well-trained waiver staff, RRDCs and DOH staff, will create a program and delivery of services that will result far more positive outcomes and save money to boot. Brain Injury 101, which is offered by the Brain Injury Association of New York State (BIANYS) free of charge, is excellent for those seeking a cursory overview of the brain, but it does not provide the level of knowledge needed and deserved by those providing waiver services nor those overseeing and regulating them.

However, BIANYS has staff qualified to train individuals to become a CBIS (Certified Brain Injury Specialist) or a CBIST (Certified Brain Injury Specialist Trainer). The CBIST is qualified to train people to the CBIS level of expertise. Both CBIS and CBIST are offerings linked to ACBIS, the Academy of Certified Brain Injury Specialists.

Now, I am anything but oblivious to the fact that Medicaid dollars, any dollars for that matter, are in short supply. There is a fee for each person sent for CBIS or CBIST training, something in the neighborhood of $300 per individual. Even if a reimbursement rate for staff training is instituted, and it must be if this program is ever to reach its full potential and save money in the process, $300 per individual is far too costly for providers. So, here is what I propose.

  • Identify some key staff members who meet the criteria for becoming CBISTs as set forth by ACBIS, and send them for the training.
  • Once they are CBISTs, they are then able to train staff to a CBIS level of expertise. No, ACBIS will not be issuing certificates because no fees were paid, but yes, staff will be at a significantly higher level of expertise and, to my knowledge, there is nothing preventing providers or the RRDCs or the DOH from issuing certificates of achievement to those staff members who have reached the CBIS level of expertise.

Were this proposal to be enacted, waiver programs would operate at a markedly higher level of expertise, waiver participants would benefit greatly, and, in the long run, would require less services to maintain and increase their independence, which is, after all, the point of the waiver in the first place.

Now, I think at some point the DOH must make this level of training mandatory, but not until one of two things happen. There is either a reimbursement rate instituted for staff training that, I have neglected to say until now, must be relevant to those who live with brain injuries, or, there is a higher reimbursement rate awarded for waiver services once the training is successfully completed.

 

Please distribute to all interested parties

 

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