Category Archives: TBI Waiver

The TBI Waiver: Seeking a Household Unified

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New York State’s Traumatic Brain Injury Waiver came into existence in 1995. Essentially it is an admirable Medicaid program that offers a set of services that help people with brain injuries remain in the community and, not incidentally, costs far less money than keeping people in nursing homes.

Recently I am hearing some deeply disturbing  things, including, but not at all limited to, the following:

    • Survivors of brain injury are being told their services will need to be cut by contract employees of the New York State Department of Health who are not experts in the field of neurology and therefore would appear to be making decisions they do not appear qualified to make.
    • There is a service offered by the waiver called Independent Living Skills Training. According to the DOH’s waiver manual ILST “services may include assessment, training, and supervision of, or assistance to, an individual with issues related to self-care, medication management, task completion, communication skills, interpersonal skills, socialization, sensory/motor skills, mobility, community transportation skills, reduction/elimination of maladaptive behaviors, problem solving skills, money management, pre-vocational skills and skills to maintain a household.  ILST services are individually designed to improve the ability of the participant to live as independently as possible in the community. ILST may be provided in the participant’s home or in the community. This service is provided on an individual basis.”          However, I am hearing that survivors are having their ILST services cut against their will. Now I am sure that were one to look closely at those receiving ILST services there may very well be cases where services should be reduced, or stopped altogether. However, the problem, and it is a potentially dangerous one, is that the decisions to cut these services appear to again being made by people not qualified to make them.
    • There is another waiver service called CIC, Community Integration Counseling. CIC is essentially talk therapy designed to help a person living with a brain injury come to terms with living life with brain damage. Now I am hearing some survivors are being told to turn to the mental health community for their counseling. Again, dangerous. A brain injury is an injury, not an illness. Period.
    • I have also had some reports that some New York DOH contract employees are saying the waiver was never meant to be a permanent support for people with brain injuries. First of all, that is disingenuous, secondly, brain injuries do not entirely heal, and there are lifelong deficits some of us live with that will require support for us to remain in the community.

Now, I would be wrong to villainize the New York DOH as a whole. Like all government agencies that are under pressure to cut costs. All the more reason they deserve advocates standing with them against any and all forces that continue to put the quality of lives and the lives themselves at risk. Therefore all parties need to be at the table: the New York DOH, the Kahrmann Advocacy Coalition, the New York State Brain Injury Association and the Providers Alliance, a group of  40 or more waiver service providers.

Everyone involved in regulating and providing services as well as advocacy for people with brain injury should be at the table looking to remedy things. No one party, including the DOH, should be made or choose to go it alone.

Lincoln was right when he said, “A house divided against itself cannot stand.” A household unified can stand and then some.

 

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Feeney, the White House, Editors, Elected Officials & Criminal Investigations

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If New York State enters into a contract allowing Timothy J. Feeney to once again impact the lives of survivors of brain injury and those who provide services to them, several things will take place. Before I get to them, let’s review some of the facts.

  • Fact: For more 15 years now Timothy J. Feeney has misrepresented his educational credentials to New York State Officials, people with brain injuries of all ages, children with disabilities, educational institutions and healthcare providers.
  • Fact: Feeney’s so-called PhD and so-called Masters Degree were issued by Greenwich University, a now defunct diploma mill whose degrees are not recognized as valid anywhere in the world.
  • Fact: The New York State Department of Health now knows Feeney has misrepresented and continues to misrepresent his credentials.
  • Fact: STIC (the Southern Tier Independence Living Center), the provider likely to be awarded the contract and give the work to Feeney and his people, has been fully informed of Feeney’s past and present misrepresentations.
  • Fact: STIC and the New York State Department of Health have been informed that Feeney is under contract with the Fort Ann Central School District in New York’s Washington County to work with children (children!) with disabilities , where he is again misrepresenting himself in the process. Fort Ann has been informed as well and has continued working with Feeney; so much for putting the children first.
  • Fact: If Feeney is part of the contract he will be getting paid in taxpayer dollars, Medicaid dollars which means your money and mine will be paying a dishonest individual.

If New York State enters into any contract which allows Feeney to be part of the Statewide Neurobehavioral Project, an entity that wields enormous power over the lives of survivors of brain injury and their families as well as those who provide services to them, then New York and STIC are making it clear they have no respect for people with brain injuries. Why on earth should those of us who live with brain injuries have to deal with someone who lies about who they are? Someone who is unqualified?

And what was the dysfunctional thinking and the behind the scenes backslapping that went on that led to the decision to contract with someone everyone knows is a fraud? What did not go on behind the scenes was any real concern for those of us who live with brain injuries, our loved ones, and the honest healthcare providers that do give a damn. What did not go on was any respect whatsoever for the hard-earned taxpayer dollars that will pay Feeney and his crew.

Back to what  will take place should Feeney and his people be involved in the contract.

  • Letters will be written to the editors of all daily newspapers in New York State and neighboring states detailing the actions of the State and Feeney and STIC.
  • Letters will be sent out to a wide array of State and Federal officials, including President Obama, Healthcare Secretary Sibelius, as well as various members of law enforcement given that historically Feeney has interacted with the judicial system again misrepresenting himself in the process.
  • Last, but by no means least, letters will be sent to CMS (Centers for Medicare & Medicaid Services), the Federal Agency the oversees the spending of Medicaid and Medicare dollars in all states, and an agency that will not be pleased to here New York has knowingly entered into a contract with someone they know is misrepresenting his credentials.

The ball is in the court of the State and STIC. We’ll see what happens.

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We Are Not Cottage Industries

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A few years ago I was talking with a woman whose husband suffered a brain injury. She said, “The moment he got his disability he became a cottage industry.”  While the definition of a cottage industry involves work done at home, the point she was making was and is spot-on accurate. People with disabilities are often seen as a way of making money.

As those of you who are regular readers this blog know, I live with a brain injury and have worked in the field for 15 years, for the most part in the arena of New York’s Traumatic Brain Injury Waiver, a welcome form of Medicaid reimbursement that funds services designed to help survivors of brain injury remain in the community and grow their independence.  Companies and individuals who provide waiver services run from the gamut, from superbs to slugs. The superbs are those who really work to help someone grow his or her independence which results in their actually needing less services over time. The slugs are those who pile on as many services as possible, often more than any person, brain injured or not, can handle, or, for that matter, needs. The slugs do all they can to keep survivors in their program and have no intention whatsoever of helping them increase their independence.  I call it community-based warehousing.

A perfect example of a slug provider at work was an example cited in an April blog post.

“I know someone who lived with a brain injury. She is extremely bright and nobody’s fool. Were she in a coma she could likely outwit 99 percent of the people I know. Anyway, she was attending a day program and made it known she wanted to get a part time job. So the program tells this woman that they will clear out a little office space they have and set it up with candy and soda so she can sell the items a few hours a week and she can keep some of the money. This woman said to me, “Do they think I’m stupid or what? Do they think I don’t know that the only reason they’re offering this is so they can bill for the hours I’m in selling their damned candy?” In other words, all this Albany-based provider cared about was not losing the money they would lose if this woman had a part time job in the, wait for it, community!”

This same provider enlisted some in their program to clean their offices, paid them a pittance, and reported them as people that had successfully returned to the workforce. Oh, the program billed Medicaid for the time the survivors were cleaning their offices. Bill trumps humanity on too many fronts.

We are not cottage industries, we are human beings.

There are some extraordinary providers who know this. Cortland Community Re-Entry Program in Cortland is wonderful, Living Resources in the Albany area is too, and  so is the Long Island-based program, RES. They know we are not cottage industries and they also know something else too. By providing high quality services, people with brain injuries grow their independence, the word gets out, and more people want to go to their programs.

If you are inclined to blame the current state of affairs solely on the New York State Department of Health, don’t. Like most state agencies,  in my view, they are, through no fault of their own, understaffed and overworked. It is not easy for them to send out the number of survey teams they’d like to in order to take the slugs to task and praise the superbs.

The responsibility of making a slug a superb falls on all our shoulders. The dysfunction of dehumanization needs to be brought into the light. If you are someone who knows of this type of dysfunction and you are unsure of what to do with it, or you are scared of what might happen if you do act, drop me a line.

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Feeney Facts Plain and Simple

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It is  amazing how stone cold facts sometimes get a bit foggy,  or so some would hope. So, I thought I’d lift the fog a bit.

Fact: Timothy J. Feeney continues to say he has a valid PhD and a valid Masters Degree when he doesn’t.

Fact: The Southern Tier Independence Center in Binghamton New York may well get the contract from the New York State Department of Health to be the Statewide Neurobehavioral Project for New York’s Traumatic Brain Injury Waiver.

Fact: All indications are Southern Tier has every intention of giving the work, once again because they did it before, to Feeney and his team. 

Fact: The New York State Department of Health and the Southern Tier Independence Center are fully aware of  Feeney’s bogus degrees and both parties have received communication from brain injury survivors, family members and, in some cases, providers, asking to be protected from having Feeney and his company in their lives. Some providers have said they will stop providing services if Feeney returns.

Fact: If the Southern Tier Independence Center gets the contract and gives work to Feeney and the state doesn’t step up and stop this from happening that means that the Southern Tier Independence Center and the NY State DOH are okay with a dishonest and unqualified individual impacting the lives of the 2700 or so brain injury survivors on the waiver, their families, and the dozens of honorable healthcare providers trying to provide waiver services.

Fact: If the last Fact were to happen, it would mean Southern Tier and the State are not putting the survivors, their families, and the providers first.  And, by the way, it would mean both parties are sticking  it to the taxpayers because it is taxpayer dollars that would foot the bill, and taxpayers deserve honesty too.

Fact: The Kahrmann Advocacy Coalition, whose membership will soon be larger than that of the prestigious Brain Injury Association of NY State, is paying close attention, which is fairly relevant since the coalition was founded by brain injury survivors and their loved ones, they very people all the aforementioned parties say they care about.

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Where the Facts Lead

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Advocacy is not easy.

As a human rights advocate you see the ability of human beings to dehumanize other human beings, often for financial game and, almost as often, so those doing the dehumanizing can feel powerful, though it takes no power to dehumanize someone, just an ability to be heartless. You see lives lost, figuratively and literally.

I hold fast to something Dr. Martin Luther King Jr. once said. “"The ultimate measure of a man  is not where he stands in moments of comfort and convenience, but where he stands at a time of challenge and controversy. The true neighbor will risk his position and even his life for the welfare of others." Is is easy to hold fast in times of challenge and controversy?  No, of course not. It can be brutally hard, scary, painful, and, at times, deeply lonely. But I can live with all that. What I can’t live with, what is far more painful, is the task of staying silent when bigotry and discrimination is at work.

Perhaps one of the most grueling things for me is when I see other advocates set aside their advocacy when it is a friend or family member or business colleague or revenue source doing the dehumanizing. Staying silent, or turning a blind eye when people are being denied their rights, or are being misled, lied to, hurt, is not in my repertoire. In my more selfish moments, I wish it was, but it is not. It is painful when people you know stay silent when someone they happen to know is doing the dehumanizing, the discriminating. I’ve had some who I’ve admired and genuinely liked lash out at me when my advocacy efforts bump into members of their inner circle.

I can’t help where the facts lead.

Once, many years ago, I worked for a long-term healthcare facility in the Bronx. The company held a Christmas Party in a restaurant’s basement level banquet hall. To get to the hall you had to walk down a very long steep flight of stairs. There were no bathrooms on the same floor as the hall and, there was no elevator. This, of course, posed a problem for a good friend of mine who, like me, worked for this healthcare company and was a wheelchair user. Jim Cesario is about as dazzlingly good with a wheelchair as one can get, but still, rolling down a steep flight of stairs and then up again when you had to leave or, say, use the bathroom, would be rather difficult.

Anyway, once I’d learned of the set-up I announced I would not attend the party. Jim along with his wife and daughters were not going, for obvious reasons, and several staff members decided not to go in protest because of the sites inaccessibility. Marked as the ring leader, I was called into the administrator’s office where a few things were explained to me. Yes, they knew this was not fair to Mr. Cesario but after all he was the only wheelchair user on staff and they’d gotten a really good discount price for the hall. And secondly, didn’t I understand that my refusal to go was a blatant sign of disrespect for the company owner and the company as a whole? I said it didn’t make a difference if it was one wheelchair user or dozens, and as far as disrespecting the owner was concerned, perhaps the owner and all members of upper management ought to consider how they’d feel if they had to be carried up and down stairs – in front of their spouse, children and co-workers no less! – every time they needed to use the bathroom.

Needless to say, the party was held in the basement hall. I didn’t go. What’s worth noting is the party was thrown by a healthcare company that would tell the world it fully supported equal rights for wheelchair users, unless of course there was a discount to be had.

And then, in recent history, I uncover the fact that Tim Feeney was lying when he told – and continues to tell -  the world that he is Dr. Feeney or Tim Feeney PhD, when the only valid college degree he has is a bachelors. For fifteen years he was arguably the most powerful voice in the implementation of New York State’s Traumatic Brain Injury Waiver, a form of Medicaid reimbursement for survivors of brain injury living in the community. During that time Feeney would dictate policy and procedures to companies providing waiver services, inflict admission holds, direct that some survivors  be removed from the waiver or stop others from getting on the waiver.

Now you would think that when the truth was revealed, the advocacy community, not to mention the survivors, their families and providers would be glad. Most were. But some attacked me for bringing the truth into the light. Why? In some cases it was because Feeney was linked to people they liked and were friends with, namely former New York DOH employee Patricia Green Gumson and current DOH employee Bruce Rosen.  Both oversaw the waiver for many years and did many truly good things during that time. However, investigation of Feeney revealed there was ample reason to believe both both Gumson and Rosen knew about Feeney’s misrepresentation and covered for him.

I can’t help where the facts lead.

And now it again appears that Feeney may be given the same powerful position in the waiver even though the DOH and STIC (Southern Tier Independence Center) in Binghamton, the company likely to be awarded the contract with DOH that may lead to Feeney’s return, are fully aware of Feeney’s dishonesty. Needless to say I’ve already had people reach out to me telling me that STIC is a highly reputable center. They are right. It is. But even the best of us, myself included, make mistakes in judgment sometimes. Do we deserve to be villainized? No. Do we deserve to be held accountable? Yes.

Which is exactly what I am doing.

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