Tag Archives: New York DOH

NY State needs and deserves its TBI Waiver

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If you take a Rolls Royce, arguably the best made car on the planet, and put a lousy driver behind the wheel, the car is going to have mishaps, accidents, and probably have a tough time staying on the road. This does not mean you get rid of the Rolls Royce, it means you get a better driver. And so it is with New York State’s Traumatic Brain Injury Waiver. The TBI Waiver is an extraordinary presence in the state and, as one recent person commented on this blog accurately pointed out: “Without the comprehensive services (of the waiver and its) dedicated staff …survivors (of brain injuries) will be forced to live in nursing homes and out of state facilities. These folks will never have the opportunity to live – albeit with supports – as independently as possible in the community, rebuild friendships and relationships, and enjoy life as any other person would.”

The problem is not the waiver. The problem is the insular and dysfunctional staff at the New York State Department of Health who are dangerously mismanaging the waiver, along with a disturbing public silence in support of the waiver from groups like the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) and Brain Injury Association (BIANYS). I would urge both groups to publicly support the waiver and do so soon.

The TBI Medicaid Waiver came to New York in 1995 so brain-injured New Yorkers living in nursing homes oftentimes in Massachusetts yet paid for by New York dollars, could come back to New York and live in the community. The waiver also helped and continues to help brain-injured New Yorkers at risk for nursing home placement remain in the community.  It is worth noting too that it is less expensive for someone to be on the waiver than in a nursing home.

Time is very much  of the essence. The current behavior of the DOH (along with a well-fed rumor mill that says the state is looking to dump the waiver) is putting the lives of those on the waiver at risk; at real risk. Let’s not forget that a federal court had to step in and protect the life of waiver participant Francine Taishoff from the DOH. Let us not forget that the DOH was seeking to dump Ms. Taishoff from the waiver, charge her $24,000 in back housing subsidies, knowing full well that their actions would’ve probably rendered Ms. Taishoff, who is a senior with a brain injury, homeless, which may well have ended her life. Slashing housing subsidies with little if any explanation, holding off on signing service plans (waiver lingo for treatment plans) for inexcusably long periods of time, blocking waiver staff from supporting their clients at Medicaid Fair Hearings when their services or homes are being threatened, all adds up to a hostile, dangerous, and life-threatening environment.

It was worrisome when,  after publicly warning the TBISCC during their September 12 meeting that lives were at risk,  council chair Michael Kaplen immediately responded by adjourning the meeting, never mind the threat to people’s lives  and never mind that Mr. Kaplen’s term on the council, we later learned, ended in 2004.

None of us want to wake up one morning and learn that someone has died because of the behavior of the DOH; but it is the DOH, not the waiver that is the problem. If the waiver is not protected and better “drivers” placed at the helm, tragedy awaits. It’s inevitable.

This country was founded on the belief that individual freedom is an unalienable right. Freedom includes independence, and all people, with or without disabilities, deserve the maximum independence possible. To dismantle or abbreviate the waiver, rather than supporting it, building it, and giving it better “drivers,” would be the denial of freedom and independence which is, when all is said an done, about as un-American as it gets.

 

A Renegade NYS Agency

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There are, as you might guess,  state and private agencies who put great effort  into convincing the public at large that they truly care about the people they serve and are working very very hard to meet their needs. Peel back a  few layers of public-relations spin and you will oftentimes find nothing could be further than the truth. Too often the motive is to look rather than do good, and raise a little money while you’re at it.

A few people I work closely with are beginning to look deeper into the activities of a non-profit agency. As those of you who read this blog already know, the NYS Department of Health is a problem in nearly every sense of the word when it comes to the lives of brain injury survivors in the state. However, in fairness to the DOH, it does not fall into the category of an agency who tries to look good. It makes little to look good at all because it is hard to determine who is actually holding them accountable. They are an arrogant renegade state agency if their ever was one. The way they treated the TBISCC (Traumatic Brain Injury Services Coordinating Council) earlier this month reeks of arrogance.

The TBISCC, to its credit, has asked the DOH to speak on the problems with Medicaid Fair Hearings being faced by brain injury survivors on the state’s TBIU Waiver because the DOH last year gave a verbal directive blocking their case managers from advocating for them at the hearings. The day before the TBISCC’s meeting on April 14, the DOH notified TBISCC Chair Michael Kaplen that no one would be available to discuss the matter.

Now, this writer and others wrote to the DOH’s  Cheryl Veith asking her to put us on a several years old email-list that tells the public when the TBISCC is having its public meetings and sends out agendas and minutes when they become available. Apparently the DOH has decided the mailing list was too friendly. Ms. Veith responded with “We have recently implemented a process whereby announcement of scheduled TBICC meetings, minutes of the last meeting, and a draft agenda for the next scheduled meeting will be posted for the public to view on the Department of Health website at: www.nyhealth.gov/events/meetings/index.htm.”

Some who live with brain injuries live with memory deficits, processing challenges, and more. Wading through a website can be tantamount to climbing Mt. Everest without oxygen.  This fact has been shared with Ms. Veith and other DOH officials like Deputy Commissioner Mark Kissinger, Mary Ann Anglin, Lydia Kosinski and Carla Williams, all of whom will do their level best to convince anyone who crosses their path that they really really really care about brain injury survivors. So far, a large number of survivors and their families and healthcare professionals who work hard to help us think that’s bunk.

Reinstating the email list is, to use a phrase right out of the ADA, a reasonable accommodation for those of us who live with brain injuries. I doubt they will reinstate it   because for some time now there are two words no one links to the NYS DOH: reasonable and accommodating.

NYS DOH Evasiveness, the BI Council & Unpaid Providers–Part II

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NYS Department of Health numbers released at last week’s meeting of the TBISCC (Traumatic Brain Injury Services Coordinating Council) reveal that TBI Waiver providers across the state may not be getting paid for nearly 11 percent of those individuals on the waiver. The DOH figures for March reveal that while there were 2,839 people were on the waiver, only 2,527 were billed for and 312, or 10.98 percent to be precise, were not.

In every region in the state it appears waiver providers are doing significantly more work than they are getting paid for, a fact the DOH was and is quick to blame on anyone but the DOH.  Some of the numbers are staggering. In New York City it seems providers are not getting paid for nearly 22 percent of those on the waiver with 374 enrolled and only 293 getting billed for. In Long Island providers were not paid for 14.2 percent of their waiver participants and in the Binghamton/Southern Tier region they were not paid for 12.29 percent.

While TBISCC chair Michael Kaplen pressed DOH officials at the meeting for an explanation of the numbers’ discrepancies, both Kaplen and DOH Official Maribeth Gnozzio speculated that the reasons for the discrepancies in the numbers may the responsibility of anyone but the DOH itself.  Gnozzio was more generous with her finger pointing, placing the reason for the discrepancies at nearly everyone’s feet but the DOH’s. She blamed the counties, delays in billing, lapses in service coordination, and fair hearings. Kaplen, on the other hand, speculated that the reasons may some are on the waiver who don’t need to be and others may not getting waver services. However, Kaplen made it clear the issues was a significant one when he said, “This is a huge number to go unaccounted for.”

Kaplen said, “If you have a discrepancy, and I’m just going to use Syracuse (with) approximately 40 individuals (that providers have not been paid for), it means… it could mean that some of these individuals don’t need services and that’s why there’s no billing and they really should be examined to determine whether or not they need to be on the waiver. It’s also possible being that some of these individuals need services and are not getting services and that’s why there’s no billing taking place. But I think there would be important to look at both of those items.”

This writer can tell you that he cannot remember single instance of a provider refusing to give services to a survivor. Moreover, both Gnozzio and Kaplen failed to mention what may well be the primary reason for the differences in the enrollment and billing numbers. When CMS (Centers for Medicare & Medicaid Services) recently audited the state’s waiver, they made it clear that providers could not bill until the received signed approval in the form of an NOD (Notice of Decision) from the DOH. Sources from around the state make it clear the DOH is often slow off the mark in signing NODs and some, including this writer, think at times this may be by design. Providers are only allowed to back-bill 90 days. So, if the NOD takes four to five months to get signed by the DOH, the providers lose one to two months of revenue they’ve truly earned.

The following are the regional numbers provided in the chart provided to the TBISCC by the DOH:

Syracuse: 321 enrolled, 287 billed for.

Rochester: 492 enrolled, 463 billed for.

NYC: 374 enrolled, 293 billed for.

Lower Hudson Valley: 236 enrolled, 212 billed for.

Long Island: 246 enrolled, 211 billed for.

Capital District: 356 enrolled, 324 billed for.

Buffalo: 273 enrolled, 257 billed for.

Binghamton/Southern Tier: 301 enrolled, 264 billed for.

Adirondack: 240 enrolled, 216 billed for.

 

Now Is Not The Time

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It is safe to say I am not the poster boy for patience these days. Things I’d normally let roll off my shoulders are being snapped at.

There are a few stressors at the moment. I have to leave where I am living as a member of my landlord’s family needs the home. My landlords have, for these past nine years, proved themselves to be the greatest landlords in the world.  I am also on disability with a sprinkling of money here and there for writing along with the occasional speech; there is a reason there is no fancy car in the driveway. Truth is I wouldn’t want one anyway no matter the state of my revenue.

Thinking I was moving to Herkimer County New York we switched my NY TBI Waiver benefits there and now, given that the deal for the house we’d hope to buy looks to be dead in the water, I find myself without rent or utility subsidies and despite the fact I may be moving to a place close to my current home, I am dealing with a state Department of Health that will likely make it impossible to regains the subsidies. Those of us on the TBI Waiver are having their services sliced and diced and, in too many cases, entirely denied  by a DOH that essentially creates regulations on the fly and doesn’t even follow what few regulations they have set forth in the manual they wrote.

Moreover, because of the presumed move to another county, there are, for this month, no food stamps. So, a for man who has  been homeless before, hospitalized twice for hunger pains, the pressure is on. While intellectually I know I will not wind up homelessness, I think it fair and accurate to say that once you have experienced real homelessness in your life, its specter is always near. Along with this, my body, normally an ally, has paid the price. Nights are fairly packed with back spasms which strike sporadically throughout the day as well.

This too shall pass, as they say and I know that. I have been reading some good books, having, I am ashamed to say, started reading John Dos Passos for the first time this year (a staggeringly brave and brilliant writer).

Having said all this, now is not a good time for someone to give me any grief. Some years ago someone I was working with said, “You’re a tough guy you know.” I was mortified! To me tough guy meant bully and not only have I never been a bully I have always been the one who has looked to take on the bully. I took my mortification to my friend and sister in my heart, Judy.

“You got a minute?” I asked.

“Sure,” she said, sitting down, smiling.

“Am I a tough guy?”

“Tough guy?”

“Yeah. Tough guy. Like in bully.”

“You’re not a bully, no. But you are a tough guy.”

“What do you mean?” More mortification.

“You don’t take any shit from people.”

Now that I could live with. And it’s true, I don’t take any shit.

Especially now.

The Trust Given Me

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I recently told New York State Department of Health Officials they can trust me, and they can. I told them what I have told others.  I will stand against anyone or anything that denies people their equal rights, and I will stand with anyone or anything that supports equal rights – for all people. It’s that simple.

In early 2008 I was pretty much tossed out of the Belvedere Brain Injury Program because I would not remain silent when I saw program participants denied their equal rights by the leadership of Belvedere’s substance abuse program. The owner of the program, John Mccooey said, in front of witnesses I might add, that while my financial relationship would not change, my relationship with Belvedere would change, meaning I had to leave. Mccooey continued to pay me for awhile short time later he said I’d told someone that he was paying me for my silence which is about as absurd as it gets given the reason I was tossed from the program in the first place was my very lack of silence. So, he used a lie as an excuse to stop paying me.

While I hear mixed reviews of Belvedere today, it is worth noting that Belvedere is the only brain injury waiver provider in the state that will not allow the Kahrmann Advocacy Coalition, founded by brain injury survivors and their loved ones, to meet with program participants. As the saying goes, actions speak louder than words.

Anyway, there I was, from weekly paycheck to no income at all. I’d been an independent contractor so unemployment was not an option. Given that I had not been working a full-time schedule because of my brain injury, I sought public assistance, received a rush of help from friends, began monthly trips to a food pantry, and went back on disability and my state’s TBI Waiver which, while it has its problems, is a blessing to nearly 3,000 people.

Back then some of the people who love me said things like, We know you care and we know you don’t like it when people are being denied their rights, but you’ve got to keep your mouth shut sometimes so you can keep your job, a roof over your head.  I can’t. Not then. Not now. Not ever. Who am I to put my income over another person’s right to their equality? I look at the sacrifices made by others in the battle for civil rights and when all is said and done, losing a job or a home is not that high on the trauma scale, not when others have paid for their work with their lives.

Not long after the Belvedere blow, I met up with my friend Eric Mitchell. Eric and I worked together at Belvedere and had become close friends. I told him what happened with Belvedere and said, “At least I wasn’t assassinated.” Eric paused, said, “In a way you were,” and gave me a hug.

There are quite a few brain injury survivors along with their loved ones who trust me to stay loyal to them, to not fold when their equal rights are threatened, no matter the cost.  I will not betray their trust. Their trust is one of life’s greatest gifts to me; the fact the above referenced coalition is now the largest survivor-led coalition in the state is testimony to this gift.

I was recently asked if, as a human rights advocate, I ever get scared. Yes,  I do. All the time. But I agree with Nelson Mandela’s take on courage. He said, “I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.”

So yes, the DOH and others can trust me. They can trust that I will always stand up for equal rights and stand against any force that seeks to deny equal rights.