WNYT: TBI Patients Urge Lawmakers to Keep Medicaid Waiver Programs (video)

By Benita Zahn, 10/8/15 (video at link)

ALBANY – Around 142,000 New Yorkers were treated in emergency rooms for traumatic brain injuries in 2012.

That’s the most recent figure available.

How their ongoing care is paid for is an emotionally charged issue, drawing a large crowd to a hearing in Albany on Thursday.

It surrounds New York’s Medicaid waivers that help people with traumatic brain injuries get care at home.

“And then for the first month of the recovery I couldn’t walk,” Joseph Fisher told lawmakers.

Joseph, a high school sophomore, traveled from his Buffalo home for the hearing.

Fisher is one of the 400 people who suffer a TBI – traumatic brain injury, every day in New York.

He wants lawmakers to understand how important quality care, in the community, is for people who suffer brain injuries and not to change how those programs are paid for.

His stemmed from a concussion on the football field. More often TBI’s happen from falls and accidents affecting people of all ages.

“So we’re here to try and establish that the waiver program stays in place for those who need it but that we need expanded services for all people with brain injury,” explained Dr. Lois Tannenbaum, the board chair of the Brain Injury Association of New York State.

Tannenbaum, a TBI patient and some 40 people came to Albany to implore state lawmakers not to change their insurance.

Currently, New York’s Medicaid waiver program provides Medicaid services in the home for TBI patients. It’s a fee for service program. However, the State Health Department wants to do away with waivers, moving these people into managed care plans.
“As you know, we have millions of people in the managed care system in New York. Managed care organizations currently have broad care coordination responsibilities that will apply to these populations as well,” noted Mark Kissenger with the NYS Department of Health.

The change won’t save money, at least not in the short haul, Kissenger explained.

So this group wants to know, then why potentially disrupt the provision of highly specialized services that managed care may not cover – or prevent them from seeing doctors they’ve come to trust or programs that help them stay independent.

“Over the years those people become very close, like family to me,” acknowledged Sheree Lateer, a TBI waiver participant.

Changing who pays for the care raises fears that independence will give way to life in a nursing home.

“And they have to take care of me? No, I don’t like that,” remarked Karen Huse, another TBI waiver participant.

State health figures show 3,088 New Yorkers are enrolled in the TBI waiver program.

In advance of this hearing, the health department had agreed to delay the transition from waiver services to managed care until January 1 2017. That means it will be some time before a final decision on the change is made.