photo by: Jonah Wagner via Kansas Reflector

Jonah Wagner credits Kansas’ brain injury waiver program with helping him recover after a life-altering accident.

Topeka — Twenty-six-year-old Jonah Wagner can now operate a light switch with his left arm — a maneuver he counts a win.

Wagner was left with a traumatic brain injury after an automobile accident in July of 2021. He was in a medically induced coma due to brain swelling and infections. Wagner spent about three months in rehabilitation care in Nebraska before he was sent home to begin in-state care.

He applied for state Medicaid-funded rehabilitation services while he was out of state, and was able to immediately start services when he returned, becoming one of hundreds of Kansans using the brain injury waiver. The waiver offers rehabilitation services for people who have a medically diagnosed brain injury.

While the brain waiver doesn’t have a waitlist — unlike several of the state’s other Medicaid-funded waivers, which have thousands of Kansans waiting years for help — health care experts are worried inaction will lead to a waitlist soon.

“Thankfully, at the time, at least,” Wagner said, “there wasn’t a waitlist.”

At the beginning of his recovery, Wagner had to re-learn how to breathe, chew and swallow. Then he had to undergo physical, occupational and speech therapy. He credits community-based therapy for helping him become able to walk on his own, along with increasing his arm mobility.

“At this point, I’m just over two years out from my accident,” Wagner said. “I’ve had an incredible amount of progress compared to the expectations.”

Waiting years for services is detrimental for people living with intellectual or developmental disabilities, disability advocates say. But for people with brain injuries, a lack of immediate action could prove disastrous, as delaying care could leave irreversible damage.

The brain waiver has managed to evade waitlists thus far due to the typically shorter amount of time that services are needed, and because the waiver had been limited.

Enrolled Kansans are evaluated every six months until they either no longer need services, or plateau in progress and are transferred to another program. In 2020, the waiver was expanded to allow access for people with types of brain injuries other than traumatic brain injuries. Lawmakers have also voted to expand services to children under 16. The increased eligibility has almost doubled enrollment numbers in recent years.

In fiscal year 2018, the list was at 515. In 2019, the list grew to 537 Kansans, growing until 739 people were enrolled in 2021, the same year that the Kansas Department for Aging and Disability Services told lawmakers the system needed more funding.

At the time, KDADS Secretary Laura Howard warned the expanded eligibility had led to a spike in enrollment. In the first seven months of 2021, the waiver had already served more individuals than authorized by the waiver. Howard said the department would look at implementing a waitlist if the boom continued.

Gov. Laura Kelly staved off the imminent waitlist with extra funding allocated in her budget, but the threat still lingers.

Current status of the waiver program

The brain injury waiver, according to the most recent data, is now up to 965 eligible participants.

Janet Williams, CEO of Mind Matters, one of the state’s largest providers of brain injury rehabilitation services, said she was concerned with system backlog. While Williams champions the efficacy of the program, she’s become increasingly worried about the possibility of a waitlist.

“The beauty of this waiver is it is rehabilitation,” Williams said. “The average amount of time someone’s on this waiver is between two and three years. It’s in between. So then they go off and some can become completely independent and off Medicaid.”

“It’s about full inclusion,” she added. “You’re in your own home. You get your own therapies, you get your own attendant care, you get a job in the community like other people do.”

One problem is accountability. Williams said her organization transfers about 13 to 15 people off of services every month, but some of them aren’t removed from the waiver program.

“They were never transitioned off the brain injury waiver, so that’s a loop that needs to be closed,” Williams said.

Susan Brocklesby, director of program development at Thrive Therapy of Kansas, also alerted lawmakers of the problem during an Oct. 11 legislative meeting on health care.

“I know that the BI waiver does not have an extensive wait list like many of the others that we’ve heard about today, but I do foresee that coming down the road,” Brocklesby said.

Committee lawmaker Rep. Brenda Landwehr, R-Wichita, pushed back on the idea.

“I would be rather shocked if we ever see a waitlist on that, because I think the Legislature’s made it very clear that that’s not a waiver that can afford to have a wait list,” Landwehr said. “If you do not deal with those individuals immediately, then you don’t heal the brain, and when you don’t heal the brain, you don’t get the improvement you need.”

But providers like Williams want to see more action.

“It is my belief that the process is stuck,” Williams said. “I believe that there are people on this waiver not getting any services.”

— Rachel Mipro reports for Kansas Reflector.