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.