The state of Kansas has a special program to help some people who have suffered serious brain injuries. It's a part of the Medicaid program, but is managed under a waiver from the federal government. That waiver is up for renewal, some people are concerned that access to the program may be cut back.
To qualify for services under the Traumatic Brain Injury program, a person must have a disability caused by a blow to the head. They must also meet the financial guidelines for Medicaid. About 600 Kansans are on the program, which offers help with things like daily living skills, medical equipment, and technology to help the client live as independently as possible. Before they can file to renew the program or make changes in it, state officials must get input from people on the program and the loved ones who help care for them. During a recent call with these stakeholders, Paige Johnson, the state official who manages the program, outlined changes being considered. One would require people to apply for services within three years of being injured.
“We would also like to implement a time limitation on the waiver of three years, with the potential to extend for one additional year," Johnson says.
Those ideas did not go over well with stakeholders on the call.
"How can you do this?" one of them asked. "I am a survivor. My name is Teressa Harvey. I received my first brain injury when I was 14 years old, and I am 64 years old. I got to read my first book. Everybody should have the right to learn. And you want to rip it away from me?”
Those objections were heard loud and clear.
“The public has spoken clearly about what they want to see continue, and what they think can be improved upon," Gina Meier-Hummel says.
Hummel is in charge of community services and programs at the Kansas Department on Aging and Disability Services, or KDADS, the agency that oversees the TBI program.
“Generally speaking, folks don’t like that we would require an injury to have occurred within three years, so folks want to see that maybe you can be eligible for this waiver if the injury occurred longer than three years," Hummel says. "There’s concern about the limit on how long somebody can be on the waiver.”
Though the objections were heard, Meier-Hummel stopped short of promising that no changes would be proposed when the waiver renewal is filed. That was supposed to happen by the end of March, but technical problems with a federal web portal delayed the filing. But it is expected to be done any day. Angela DeRocha is a spokeswoman for KDADS. She says one change that will be proposed would require applications for services to include documentation of the brain injury. That documentation could come from medical and therapy records, police reports, and vocational rehab assessments. DeRocha says the goal is to improve oversight.
If that is the extent of the changes proposed, Rocky Nichols would consider it a victory for the people he serves. Nichols heads the nonprofit Disability Rights Center.
“I’ve talked personally with Secretary Sullivan," he says. "I won’t speak for the Secretary, but he took to heart the concerns that we and others brought to his attention, and I’m very hopeful that KDADS and the Secretary will not go forward with these negative changes, and if that happens that’ll be a great day for Kansans with traumatic brain injuries.”
Nichols says KDADS officials stated at a public meeting that the restrictions were originally proposed to keep from having to put people on a waiting list. He says doing that would break a promise the Brownback Administration made to federal officials last year that they would increase the number of Kansans receiving services.
“This is Brownback’s waiver, and he proposed that he would serve 767 people," Nichols says. "That was a very good thing for the governor to do. And when you make that promise, you have to follow through with it. So, if the legislature cuts the funding, or whatever happens, you still have to serve ‘em. And there was enough money appropriated to serve those people.”
Heading into the renewal process, Nichols hoped the state might remove some existing restrictions and expand eligibility for the TBI program. Currently, people whose injury is caused by something other than a blow to the head aren’t eligible. Neither are children. Regardless of when they suffered their brain injury, they can’t get services until they’re 16. As Nichols sees it, keeping these people off of the TBI program is a costly mistake.
“Someone who accesses the specialized cognitive therapies of the brain injury waiver will improve their functioning, and they’ll be less likely to need services and supports at a higher level in the future,” he says.
Advocates like Nichols are anxiously waiting for the renewal to be filed…and to find out what, exactly, the State of Kansas is proposing.