Exposing the salaries of NY State Dept. of Health officials

In a recent advocacy-email to  individuals involved with New Yorkers with brain injuries, I revealed the annual salary of a New York State Deputy Dept. of Health Commissioner Mark Kissinger.  A few people whose opinions I deeply respect and value called into question my decision to reveal Kissinger’s salary. As a result, I’ve given the matter a great deal of thought.

After doing so I arrived again at the belief that exposing his salary and the salary of others is not only the right thing to do, it is the just thing to do.

It would be a mistake to conclude my decision to reveal Kissinger’s salary was a kneejerk impulse on my part. It wasn’t. The genesis of the decision, and the continued foundation of the decision can be found by looking at one simple fact. The salaries of state employees are available to the public because they are being paid to serve the public. A visit to the website for the New York State Committee on Open Government reveals that nearly all records are available to the the public – including salaries. Therefore, the following line of reasoning holds no water for me. Salaries are available to the public but one is being unfair or unjust if they actually inform the public. 

I think New Yorkers have a right to know what their  state employees being paid. I think their right to know, and the importance of them knowing, goes up notch when, as in this case, th state employees are preparing – with what a reasonable person would believe is Governor Andrew Cuomo’s blessing – to demolish the lives of thousand of New Yorkers on the state’s Traumatic Brain Injury Waiver, and  put some of those trying to provide needed services to these men and women out of business for good measure.

The  NYSDOH has drafted a plan (without the input of stakeholders, including neurologists and neuropsychologists and without referencing a single study regarding traumatic brain injury, to transfer thousands of New Yorkers with brain injuries into managed care) that will not include the very services these individuals need and quire frankly deserve to remain in the community.

As a native New Yorker, I want to know how much money you’re getting paid to wreck the lives of thousand of my New Yorkers.

I do very much understand the concern of a few close to me over my decision to reveal Kissinger’s salary. They’re not comfortable with it, in many respects because each of them is a decent, caring, sensitive-to-others person.  I am very fortunate to have people like this in my life.

There is yet another reason for my decision. I know many, many New Yorkers with brain injuries. Many of them and a large number of their family members are my friends. People I  love and care about. So, if our friends are the family we pick, then the NYSDOH is looking to destroy the lives of some of my family members. And, yes, that makes me mad.

So, here’s some information for you; the rounded off salaries in 2014 for the following DOH staff:

Valerie Deetz, $120,000;  Jason Helgerson, $163,000;  Maribeth Gnozzio, $86,000,: Sue Kelly, $162,000; Mark Kissinger, $163,000.   This comes to a total of $694,000. In other words, more than a half million New York dollars are being paid to the very people pushing a plan that will destroy the lives of thousands of New Yorkers and put a fair number of New York companies out of business.

I think that should make any New Yorker mad. Hell, I think it should make any decent human being mad.

 

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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.

Proposal for NY State Brain Injury Waiver: Elephant #2: NYS Traumatic Brain Injury Services Coordinating Council: the Challenge & Remedy

The Challenge

Formed in 1994 by an act of the New York State Legislature, The 19-member NY State Traumatic Brain Injury Services Coordinating Council is “charged with recommending to the (NY State) department (of health) long-range objectives, goals and priorities”  for New Yorkers with brain injuries. The record shows it has done this. This is not to say there have not and are not council members who, if afforded the  chance to work with effective leadership, who care.

The problem with the TBISCC rests on two primary fronts. It’s leadership and the ongoing presence of blatant conflict of interest linked to some council members.

First, the leadership. Over its history the council has had two chairs: Charles Wolf, the former head of the Long Island Head Injury Association who left that post in disgrace, and, Michael Kaplen, an attorney whose practice focuses on landing people with brain injuries as clients and is the past president of the Brain Injury Association of NY State. Kaplen was a BIANYS board member during some of his time time as the council’s chair. Judith Avner, the executive director BIANYS has been co-chair for each, and therein lies the tip of the conflict of interest iceberg. BIANYS gets a large grant from the DOH.

A review of council minutes from its inception 18 years ago reveals not one single proposal designed to assist the department of health in developing and improving the state’s Traumatic Brain Injury (TBI) Waiver, established in 1995. Moreover, the fact that anyone from BIANYS or anyone who works for a waiver provider is on the council as a voting member wouldn’t pass the sniff test of even the most poorly written code of ethics. Moreover the council’s by-laws say: “Members shall refrain from participating in voting procedures where a potential conflict of interest may exist as defined under the Public Officers Law.” 

This has not stopped council members from blatantly engaging from conflict of interest even when they were warned not to. According to council’s own minutes for a September 16, 2010 council meeting  ex-officio council member Nick Rose warned Ms. Avner not to violate the Public Officers Law by voting on a proposed trust fund that would be raised from a surcharge on state vehicle registrations because “the Brain Injury Association of NYS ( was to) be contracted (with) to assist with the development”of the trust fund and, it is said, receive a financial percentage of the fund itself. Despite the warning, Mr. Avner and voted for the fund anyway, even though doing was clearly a conflict of interest according to the New York’s Public Officers Law.

BIANYS has a history of hands-off when it comes to the DOH. As a BIANYS member and a former board member it has been made clear to BIANYS staff, by Ms. Avner, that they are not to tamper with DOH related issues, i.e., the waiver. Is just a coincidence that the council offered to constructive proposal to the DOH regarding the waiver?

Left unaddressed,  blatant conflict of interest or the perception of conflict interest undermines the ability of this or any council to do the work it is called upon to do.

The fact BIANYS has voting members on the TBISCC is particularly disturbing. I doubt it is a coincidence that both groups, BIANYS and the TBISCC, were stone silent when New Yorkers with brain injuries were and still are going through some tough times. Neither group said anything when the DOH decided waiver providers could not support waiver participants at Medicaid Fair Hearings. Neither made an iota of effort to make sure waiver participants were informed of the results of complaints they filed. It was only last year that the DOH, to its credit, changed this policy. The point is, BIANYS members have had a role in the TBISCC and, more specifically, the TBISCC’s leadership virtually from the council’s beginning. As noted earlier, Ms. Avner was co-chair under both council chairs and Mr. Kaplen is past BIANYS president.

Does anyone with any degree of common sense in their possession think it is merely a coincidence that neither BIANYS or council says word one to the DOH about the waiver?

It is also worth noting that, until this blog exposed it, Ms. Avner’s and Mr. Kaplen’s terms on the council had expired eight and seven years ago respectfully. Apparently, Mr. Kaplen has been reappointed by a, one would hope, misinformed Speaker of the New York State Assembly, Sheldon Silver. I am not sure about Ms. Avner’s status. I am sure there terms as chair and co-chair ended a long time ago.

The bottom line is this. The TBISCC can be a positive and constructive force in the lives of New Yorkers with brain injuries. Mr. Kaplen should remove himself from the council. Barring that, he should certainly refrain from seeking the chair or co-chair position. Mr. Kaplen’s history strongly indicates that unless he can be the center of attention, his participation in council activities will rapidly decline. And,  his behavior reflects an individual who has no business being on a council like this. His disdain for individuals with brain injuries and, on more than one occasion, his colleagues on the council ought to send him packing.  I remember attending a council meeting some time ago when Mr. Kaplen responded to a series of utterly reasonable questions posed to him by Mary Ann Anglin, the DOH Director of the Division of Home & Community Based Care Services, with a level of nasty defensiveness that ought to have embarrassed him and, it must be said, did nothing to ruffle or intimidate Ms. Anglin.

In must be said too that under Mr. Kaplen’s leadership, council committees have all but ceased to exist, and executive sessions, rarely, if ever, happen. Mr. Kaplen’s rather self-absorbed dictatorial streak has run both off the road, and, as co-chair, Ms. Avner has either supported this or been ineffective in doing anything about it.

Kaplen should go. I’ve heard first hand reports of how he has yelled at people in person and on the phone, sometimes leaving them in tears, and, as this blog reported, I was present at a BIANYS board meeting when he threatened everyone to embarrass everyone at the table.

However, Ms. Avner and the presence of BIANYS, whose presence on the council needs tweaking,  should not be sent packing.

 

The Remedy

The relationship between the TBISCC and the DOH does not have to be adversarial. The TBISCC is there to recommend “to the (NY State) department (of health) long-range objectives, goals and priorities” for New Yorkers with brain injuries. Then do so!

The DOH has plenty on its plate as it is. One would think it would appreciate a sincere effort by the council to develop and propose objectives, goals and priorities. Everyone with any semblance of knowledge about the state’s TBI Waiver has known for years the lack of training in the brain is a real problem, yet the TBISCC has done nothing? Not a single idea presented? Waiver providers throughout the state have made it clear – and made it clear to the TBISCC – that the requirements for billing for services and other rules are not uniform throughout the state. There is one set of rules in one region, another set of rules in another. The council has offered nothing.

The problems with the  council are not because it is absent members – voting and non-voting – who care. It is, in my view, because the only two council chairs, Messrs.’ Kaplen and Wolf were all about Messrs.’ Kaplen and Wolf, and because of the blatant areas of conflict of interest just described.

Several things must happen in order for the TBISCC to be effective. If they do, the TBISCC can be a truly healthy influence on the lives of New Yorkers with brain injuries and a well-deserved support for the state’s DOH.

1) All areas of conflict of interest must be immediately addressed and remedied. No member of BIANYS and no one working for a TBI Waiver Program should be voting members of the council. However, both BIANYS and the providers, represented, for example, by the Providers Alliance and other such groups, should, like various state agencies, OASAS (Office of Alcohol and Substance Abuse Services) and the CQC (Commission on the Quality of Care for People with Disabilities) to name two, should have a seat at the table as non-voting members. Advocacy groups should be at the table as well. All have important and relevant knowledge to share.

2) Even if only symbolic in nature, the council should vote to uphold its own by-laws.

3) The council would be well-served to consider itself a working committee and discuss matters at hand during their meetings rather than have each meeting as a platform for presentation from outside groups who are not relevant to what is going on with, for example, the TBI Waiver.

4) The council would be wise to begin its own blog – free of cost at blogger.com – and use that format to announce meetings, publish proposals, and report on the response to those proposals.

5) The council would be wise to invite neuropsychologists and neurologists and physiatrists, not to mention people with brain injuries and their friends and families,  to get there input so council proposals would be better informed.

6) Last, and not least, and perhaps most obvious, the council is lacking in members who have brain injuries and family members who have people in their families with brain injuries.

 

Please distribute to all interested parties

 

Next: Elephant #3 Lack of effective oversight of  TBI Waiver

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

 

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!