NY State’s Brain Injury Council & Association: the tip of the iceberg?

The early stages of a  Kahrmann Advocacy Coalition investigation into the make up of brain injury associations across the country is finding there is no shortage of personal injury attorneys on board of directors.  The investigation is also beginning to reveal that few (if any) of these attorneys received any formal training in the brain.  As many know, people with disabilities and people with brain injury disabilities are often seen (and treated) as if they are little more than potential revenue streams.

Two perfect examples of dysfunction in the world of brain injury disability will be on display tomorrow in Albany: he New York State Traumatic Brain Injury Services Coordinating Council (TBISCC) and the leadership of the state’s brain injury association; both ineffective groups when it comes to advocacy and, given what is going on around the country, they may well be the tip of the dysfunction iceberg when it comes to brain injury disability.  The TBISCC will meet in Albany in part to elect a new council chair. However, a major part of the day’s opening agenda is a presentation to the council by Judith Avner, an attorney who is the executive director of the Brain Injury Association of NY State, and someone who several sources say recently blocked people with brain injuries from being on a committee that represented people with brain injuries (fiction writers would he hard pressed to come up with story lines this dysfunctional).  So, council members and members of the public will get to watch Ms. Avner represent BIANYS to a council head by Michael Kaplen, a personal injury lawyer who continues to claim the chair position on the  council even though his term expired years ago.  Not to be outdone on the gall front, Ms. Avner resigned from the council at their last meeting; an organizational feat that would make a magician proud since her term had already expired nearly 10 years ago. Imagine that, resigning from a position you no longer have. Voila!

Despite the fact some of the council members genuinely care about the council’s mission (to provide goals, ideas and strategies to the DOH to improve the life of New Yorkers with brain injury disabilities), the council, to date, has failed miserably. There are several reasons for this. The two council chairs to date, first, Charles Wolf, then, Michael Kaplen, are about as self-serving as it gets. At one point Wolf nominated himself for the position of chair and Kaplen, well…Kaplen’s term as chair expired some years ago but there he sits, claiming the mantel. Another reason for the councils failure is the state’s Department of Health, about as insular and arrogant a state agency that’s ever “walked” the planet.

And then, of course, there have been members of the Brain Injury Association of NY State on the council which is a glaring conflict of interest given the fact the DOH provides the association with a sizeable grant.

There is some hope for the council. If council members elect Barry Dain as chair, the council has a chance of moving in the right direction. If it re-elects Kaplen, nothing will change, and New Yorkers with brain injury disabilities, their families, and the healthcare providers that really do care will be the ones that suffer. The meeting tomorrow is open to the public. Following is the agenda:

 

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

Empire State Plaza, Concourse Level

Meeting Room 125

Friday, May 31, 2013

10:30 AM – 3:30 PM

AGENDA

10:30 – 10:45 Welcome

Welcome new member Megan Clothier

Review and Approval of 1/23/13 Meetings Minutes

10:45- 11:15 Review of Brain Injury Association of New York State TBI Recommendations

Judith Avner, Executive Director, BIANYS

11:15 – 12:00 State Agency Updates

NYSED Gerri Malone

OPWDD Nicole Suto/Nina Baumbach

OMH Debby Zeterstrom

CQC Colleen Scott

OASAS Cher Montayne

OVS Ann Marie Calabrese

DFS Jeff Pohl

DOH Lydia Kosinski/Helen Hines/Kitty Gelberg

12:00 – 12:45 LUNCH (Members on their own)

12:45 – 1:15 Election of Chair

Nominees: Michael Kaplen and Barry Dain

1:15 – 2:30 Discussion of role and mission of TBISCC/

Discussion of Bylaw Revisions

2:30 – 3:00 Public Comment

3:00 – 3:30 Summary/Next Meeting Dates/Adjournment

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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.

BIANYS Avner sinks to new low

The executive director of the Brain Injury Association of New York State stopped people with brain injuries from being on the committee representing people with brain injuries, say several of the committee members whose identities will be protected.

When committee members complained that there was no one with a brain injury on the committee, Judith Avner is said to have claimed she and BIANYS represented people with brain injuries and pointed out that one of the  committee members had a family member with a brain injury. Avner does not have a brain injury.

Avner did not respond to several requests for comment.

The committee was comprised of providers and others and was tasked with drafting a proposal on behalf of New Yorkers with brain injuries for the state’s Medicaid Redesign Team. The proposal had to be filed by a specified date. Not long after Avner took her  stance against people with brain injuries being on the committee, the committee folded.

People with disabilities, including those of us with brain injury disabilities, encounter people and systems who hold to the inaccurate and misguided belief that we are unable to speak for ourselves. Slowly, slowly, this perception is eroding. However, when someone who has been in a leadership position in brain injury for years oppresses the very people she claims to care about, it is beyond unconscionable. It is a kind of moral fraud. It is also bigotry.

What would happen if a committee claiming to represent Jews or Italians or African-Americans refused to allow Jews or Italians or African-Americans to be on the committee? One would hope there would be an uproar of indignation. One would also hope that those blocking the participation of people they claim to represent are fired.

Life with a brain injury disability can be difficult enough; it is made all the more so when those who claim to care are some of the biggest oppressors.

Twenty-Eight Years Ago Today

Twenty-eight years ago today I was held-up on my way to pick up my cab and shot in the head at point blank range. The bullet remains lodged in the frontal lobe of my brain. This is not a depressing day for me, not at all. In fact, as others who have survived similar moments have said, today is a second birthday of sorts.

What is worth noting is that it would be 10 years after the shooting before I would hear the words, brain damage. My experience is not unique. I know people with brain injuries all over this country and many went years before hearing the words brain injury, traumatic brain injury, TBI. Many of us were left to deal with the effects of brain damage not knowing that brain damage was the force behind the problems we were grappling with. We were, in  a sense, managing life blind folded, hands tied behind our back. We did our best, but it is hard to be successful when you don’t know or don’t understand what it is you’re up against.

All this is why it is so important for any state with a brain injury program to make sure those who design an implement the program have a solid working knowledge of the brain.

But this is not my reason for writing this today. My reason for writing this today is to share some thoughts with you. There is little doubt in my mind that you too have faced or are facing challenges that feel as if they have total control over every aspect of your life. I am here to tell you they don’t. They really, really don’t. The truth-telling, right-sizing equation goes like this; because something feels like it has total control doesn’t mean it has total control. It simply means it feels that way.

Believe me, there were times the damage to my brain felt all powerful. There were times too that the idea of returning to life after the combined experience of some kid put a gun to my head and firing and then another guy puts a gun to my head less than nine months later had so much power I did not step foot out of my house for nearly a year.  Were it not for some close friends who were my neighbors at 286 East 2nd Street in NYC, I don’t know how I would have stayed clothed and fed. In time, and with treatment, and the support and love of close friends, I began to reclaim my life and leave the house. 

And then there is this, you have a relationship with life and all the elements that come with life. I have a relationship with my brain injury. I have a relationship with the the Post Traumatic Stress Disorder that is, today, my number one opponent. There are still days I can’t get myself to leave the house. The point is, these relationships are no different than relationships  between two people. They can be healthy or unhealthy. The challenge is this. Don’t let the elements of life that look to impeded your freedom to be you of have decision making power. Relieve them of decision making power every chance you get. There may be times you can’t. Okay. Relax. Don’t worry. Get some sleep, wake up the next day,  do your best.

The last thing these life-impeding elements deserve is to be behind the wheel of your life. That is your rightful place.

Thanks for listening. Take care of yourself. Remember to live.

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

As discussed in the preceding blog post, this is Part 1 of what will ultimately be a four-part proposal for the New York State’s Traumatic Brain Injury Medicaid Waiver. The first three parts of this proposal will each be published in two segments. The first segment will outline the problem, the second segment will offer a remedy. The fourth part of the proposal will be a summation, along with some final thoughts. I would urge my readers to please share this proposal with all interested parties. If, in your respective journeys, you hear people say it is too late or too soon or its impossible to do anything or change anything, you might want to remind them that there is no time like the present to improve things and, as for any of this proposal being impossible, perhaps they should pause for a moment to consider what it is like for those who are trying taking part in life again when they can’t walk, talk, think, or remember the way you used to. Nothing that will be proposed here is impossible.

The four parts of this proposal, and with a tip of the hat to the phrase, there are three elephants in the room, are:

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

Part 2) Elephant #2: The 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

I am encouraging readers to understand that what I am setting down here is rooted in two facts: I worked in the field of brain injury for nearly 20 years and I’ve lived with a brain injury that will, this August 24th,  celebrate it’s 28th birthday. Over nearly 30 years I have seen agencies that care and agencies that don’t. I’ve seen department of health officials who care and those who don’t. I’ve seen groups and individuals that advocate with their heart and soul and I’ve seen groups and individuals that say they are advocates and they are not. Moreover, I’ve seen individuals and groups who are so sadly self-absorbed that they will gladly  and boisterously support a proposal, if and only if, they can figure out a way to claim the proposal is theirs. And, if someone sees something in this proposal they like and they want to claim it is their idea, that’s fine by me. I don’t care whose idea it is. What I care about, and, what I believe most involved with the TBI Waiver care about (and yes, with some exceptions, I am including  those in the DOH), is that the state’s TBI Waiver, whatever its ultimate form, provides New Yorkers with brain injuries with the kind of services that give them the best chance of reaching their maximum level of independence.

 

Elephant #1: Lack of knowledge about the brain

 

Note: You will hear me talk about how those providing waiver services have, over time, developed a level of knowledge about the brain that is far superior to those in managed care companies (and many others). This  should in no way be seen as a contradiction of the assertion that a lack of knowledge about the brain is a rather global problem. Many waiver staff have learned as a result of their individual efforts and as a result of employers who, when able, will take the financial hit that comes with sending a few of their employees to at least some training. The need to increase knowledge of the brain on all fronts, including (and in fairness to) the state’s department of health, is very real.

The good news (and it truly is good news), is this: the majority of companies providing waiver services (we’ll call them waiver providers) are trying with all their might to provide the best services possible, but they are doing so without being able to give their staff the proper training because, in most cases, it is far too costly.  There is no reimbursement for staff training and there needs to be. Those who say it is up to the provider to do this on their dime are just plain wrong. It is simply too expensive. Moreover, there can be no argument that properly trained staff mean a more effective delivery of services and, as a result, those receiving the services will experience outcomes that will grow their independence and thus reduce their need for services, which, for the bean counters, means Medicaid dollars saved.

The way things stand now if a waiver provider wants to send five staff members at a time for training, they must pay the staff while they’re going through training. The waiver provider may or may not have other staff that can do the work of the staff in training. Yet, in some cases, when it comes to counseling services, this strategy would be therapeutically irresponsible.

Lack of knowledge about the brain can and often does result in waiver participants receiving more services than they really need. Lack of knowledge about the brain also provides the less ethical waiver providers – and they know who they are – with an excuse to engage in community-based warehousing, a trend that would be much harder to hide were staff better trained and providers held to a higher training standard.

Right now the lack of knowledge about the brain is leading decision makers to consider changes in waiver services that would be dangerous for waiver participants and, in some cases, stop some people with brain injuries from ever rejoining the community while causing others, now living in the community, to be placed in nursing homes. This is not an overstatement.

Let me be specific:

HCSS (Home and Community Support Services): HCSS staff provide services that help waiver participants manage life in the community with the minimal support necessary for doing so. Apparently, cutting these services dramatically and or entirely is under consideration, the thought being to replace HCSS staff with PCAs, personal care assistants, who are trained to provide a higher level of  care (hands on when necessary). Hands on care is  not needed by many of the waiver participants now receiving HCSS services. There is a gaping flaw in the reasoning behind what is being considered here that can be directly attributed to a lack of knowledge about the brain.

  • What will happen to waiver participants who require no hands on care but who live with a memory (cognitive) deficit that will stop them from finding their way home if they leave their house?
  • What will happen to the waiver participant who has, let us say, no problem whatsoever writing down his or her shopping list but, when they enter the supermarket, the lights and noise and physical activity will be cognitively overwhelming and, were it not to the presence of an HCSS staff member, the shopping trip would not reach a successful conclusion?
  • What will happen to the waiver participant who, in addition to living with his or her brain injury, lives with PTSD  and, as a result,I s unable to leave their home and go for walks or community excursions without an HCSS staff member?

None of the above scenarios requires hands on care, i.e., someone with a PCA level of training. To remove HCSS from the mix would be dangerous and would signal a worsening of services. It would also result in the end of independence for many and the end of a chance at independence for many others.

 

CIC (Community Integration Counseling): CIC is a form of psychotherapy designed to help a waiver participant manage the experience of living life with a brain injury.

  • Any cuts or caps currently being considered to this service are dangerous and, again, very likely a result of the lack of  knowledge decision makers have of the brain. First, the idea of removing CIC as a waiver offering and handing it over to a managed care company is essentially throwing the baby out with the bath water. There are CICs across the state who over time have developed a really admirable knowledge and understanding of people who live with brain damage, to remove them from the mix is a step backwards. There is little enough knowledge of brain injury in the first place, don’t remove or displace those that have the knowledge that is so desperately needed. The shortage of those who understand the brain is severe enough, there is no healthy reason to make it worse.
  • The idea of limiting CIC, requiring that it end at some point, is another example, albeit an understandable one, of decision makers not understanding the brain. The following point is critically important for everyone to understand, to fully grasp. A brain injury is not, I repeat, not a fixed thing. It is not static. For the person with a brain injury it is one experience when they are rested, often another experience when they are tired. The role a brain injury plays in one’s life changes over time. From 1995 to about 2004 I was able to work full-time hours and then some. On or about 2004, that changed. Fatigue became a factor, and, for the first time, a marked sensitivity to noise emerged. I had arrived at a place where I could maybe work 10 or 12 hours a week at most. Dealing with change like this is a formidable emotional ride, which is why CICs are so deeply important, and why no one but the CIC and the waiver participant should be deciding when or if the therapy should end.
  • The idea of ridding the waiver of CICs altogether is, like that of slashing or ending HCSS, or, for that matter, Service Coordination (Case Managers), a bad one. It will be discarding a slew of people across the state who have a far better understanding of the challenges faced by those living with brain damage than any of their perspective counterparts in  managed care companies.

Service Coordination (Case Managers): Service Coordinators, the waivers term for case managers, work with a waiver participants to help them identify and utilize the services that would best support their quest for independence. Like other waiver service providers, CICs, the Behaviorists, and so on, these Service Coordinators have, over time, developed a working knowledge of the brain that is far superior to any of the case managers in managed care companies who, by the way, are burdened with case loads that are, in brief, largely inhumane. Once again, these Service Coordinators are a valuable resource, to discard them would be, in short, a disaster.

Regional Resource Development Centers (RRDCs): RRDCs are agencies under contract with the state’s DOH to oversee waiver providers and participants in specific regions throughout the state. Some RRDCs are superb (Southern Tier Independence Center out of Binghamton and the Southern Adirondack Independent Living Center out of Queensbury, to name two), some are not. To remove the RRDCs from the picture and hand their work over to managed care companies would  be a disaster. The good RRDCs have a working knowledge of the brain and the waiver itself that far exceeds anything a managed care company can bring to the table; it is not even close.

In other words, to sum up this portion of the proposal, decision makers must be careful not to discard those that have, through hard work and experience, accrued a real knowledge of brain injuries and those that live with them. The notion that informed waiver service providers are  important resources applies to all the waiver services, not just those mentioned here.

***

Moving on.

Imagine, if you will, two scenarios that quite a few waiver participants have experienced.

Scenario #1: You’ve had a stroke or been in a car accident and your head hit the windshield. As a result, you find that you still think as clearly as ever but every time you try to talk you have trouble putting the words together.

Scenario #2: As a result of a stroke or car accident, you find that you have the same desire you always did to keep your house clean or go for long walks or go to the gym, but you just can’t get yourself to do or finish any of these things.

Scenario #1 describes someone who is dealing with what’s called expressive aphasia. There is likely due to damage to an area on the left side of the brain’s front lobe called the Broca’s Area. It is there that the brain provides you with the ability to accurately say what you want to say. When it is damaged, the person is thinking as well as they ever did but their ability to say what they want to say is damaged. Scenario #2 describes a symptom attributed to frontal lobe damage wherein the person is telling the truth when they say they want to cook a meal or go for a walk and go to the gym, but the internal ignition, as it were, is not there, or, the “fuel” needed to complete the task is not there. It’s as if you were sitting in the driver’s seat of a car your loved but the car had no ignition, or no fuel, or, was absent both.

 

Structured Day Programs (SDPs): If there is any waiver service that finds itself in the arena of being overprescribed, it is structured day. When well run, and they often are,  these programs are critically important and very helpful. I’ve seen the structured day program offered by RES, a waiver provider in Long Island, and it is, in a word, spectacular. Living Resources in Albany is excellent. The same can be said of the structured day program that was offered at the Cortland Community Re-Entry Program under the remarkable leadership of Joseph Abdulla. Sadly, Healthcare Associates, Inc., parent company to the Cortland program, dropped the ball, and the Cortland program is no more.

Having said this, some SDPs are prime examples of community-based warehousing and a blatant disregard for the rights of the participants and the realities of their injuries.

Let me first explain a reality faced by everyone who lives with brain damage. Simply put, part of your brain doesn’t work anymore which means the rest of your brain must pick up the slack. It has to work harder, in other words. A good analogy would be, you have a car with a six-cylinder engine. One of the cylinders stops working. The engine still runs, but it is now five cylinders are being asked to do the work of six. The fact that the injured brain is working harder is one of the primary reasons fatigue is a factor for many of us. Moreover, the brain itself has no nerve endings so, unlike your arms and legs who, bless them, will let you know when they’re tired, the brain won’t. You have to learn to read the signals as it were.

Some of the less ethical waiver providers don’t want their staff to learn more about the brain because they don’t want to reduce any services for anyone. As the wife of a man with a brain injury once told me, “The second my husband got his brain injury he became a cottage industry.” I remember becoming a CBIST (Certified Brain Injury Specialist Trainer) which meant I had the expertise to train others to CBIS (Certified Brain Injury Specialist) levels of expertise. The Albany-based provider I was working for at the time never once utilized my skills on this front and even scoffed at the CBIS training manual as being useless, never mind that the manual was thanks to the input of a wide range of neurologists, neuropsychologists, and so forth.

A frequent pattern in SDPs run by the less ethical waiver providers is as follows. Waiver participants are often expected to attend the SDP Monday through Friday and stay for the full five hours the waiver provider is legally allowed to bill for. Whether they attend five days a week or not, they and their clinicians are told that they cannot leave structured day to meet with a clinician. They can meet with the clinician during their (the participant’s) lunch hour, or at home in the evening. Why is this? The waiver provider doesn’t want to lose a single solitary hour of billing for structured day. Never mind that the participant will be exhausted in the evening, it doesn’t matter. I know of cases where participants arrive home, exhausted after a full day of structured day, only to have one to three hours of clinical time at home. And, if the participant finally says enough, stop, the provider will drag them in front of the RRDC claiming the participant is refusing the care they agreed to. Now imagine trying to defend yourself if, as described above, you had expressive aphasia.

These are some and by no means all of the challenges now being faced by New York State.

 

Please distribute to all interested parties

 

Next: Lack of knowledge about the brain – a remedy