Kansas denied care for these victims of brain injuries. That’s finally changing

Jul. 1--Antoinette Hunter suffered a stroke three years ago that damaged her brain, impaired her mobility and left her unable to take care of herself.

She's spent a good portion of every day since lying in bed in an Overland Park nursing home.

"I'm ready to go home," Hunter, 55, said last week. "I'm ready to get out of here. I think three years is a very long time."

Hunter, who is on Medicaid, couldn't get the rehabilitation services she needs because of a quirk in Kansas law: Only people who have a traumatic brain injury -- from a blow to the head -- qualify. People like Hunter with an "acquired brain injury" due to internal forces like strokes, tumors or asthma attacks were not eligible.

If they couldn't pay out of pocket for in-home supports and rehab, they would either have to rely on family members to take care of them or end up in a nursing home like Hunter.

That's about to change.

Starting Monday, thanks to the work of an unusual bipartisan coalition, the state is expanding its Medicaid support services for brain injuries to include those with the acquired type as well. The change comes after years of lobbying by advocates like Heather Matty, who works at the Brain Injury Association of Kansas and Greater Kansas City.

"We got so many calls for people that were not eligible," Matty said. "It was a sad reality. I'm just very thankful that they finally were able to get this changed and they finally came to an agreement because it's taken a long time to get this done. And it's going to help a lot of people."

Janet Williams is the founder of Minds Matter in Overland Park, the state's largest provider of services to people with brain injuries.

She said Kansas was the first state, in 1986, to develop a Medicaid "waiver" specifically to allow people with brain injuries to get all the same rehabilitation services at home that they could get in an institution.

From the beginning, though, lawmakers have limited it to people with traumatic brain injuries because they were worried about the costs of offering it to everyone with brain damage.

"They were afraid of the numbers and it was supposed to be like a trial to see if it worked, and then every time we came back to get the definition changed, they'd bring up the fear of numbers," Williams said.

Advocates like Williams argued that providing the services can actually save money in the long-term if they help people live more independently.

Since then other states have enacted their own waivers and some, like Iowa, include all brain injuries. But Missouri and Kansas have continued to restrict it to traumatic brain injury, or TBI. Kansas also restricts it to residents age 16 to 65.

The restrictions, and the fact that people come off the waiver when they complete their rehab, have kept the program well under budget. There are only 346 people using it right now, which Williams said is the "lowest number in 10 years." About 65% of them are Minds Matter clients.

The financial cushion helped convince lawmakers to expand the program, after an unusual coalition formed for it in Topeka.

Longtime advocates like Democratic Sen. Laura Kelly (who is now governor) and moderate Republican Sen. Vicki Schmidt (who is now state insurance commissioner) lent their support. But this time they were joined by conservatives like Mark Dugan, the former campaign manager for former Gov. Sam Brownback.

Dugan's young daughter, Joyce, had sustained a traumatic brain injury a year earlier, and in the course of her rehab he and his wife, Karissa, met kids with internal head injuries who could never qualify for the Medicaid services, like a 12-year-old named Mason who'd had a stroke.

Dugan said that didn't make sense, because their rehab needs were so similar to his daughter's.

"When Karissa and I visited with our ER doctor who had ordered an MRI -- in one of the more difficult conversations we had -- she solemnly shared with us that Joyce's long-term injury would be 'stroke-like,'" Dugan told lawmakers. "As we've come to know kids like Mason and others with acquired brain injuries, their recovery needs and protocols are close to identical to Joyce's TBI protocol."

Dugan's support helped get the changes across the finish line. He said Republican Rep. Brenda Landwehr and former state Aging and Disability Services Secretary Tim Keck were also key, joining Kelly and Schmidt in "an impressive bipartisan and bicameral effort."

Legislators approved the inclusion of acquired brain injuries starting July 1 and also voted to expand services to children under 16. The second piece won't go into effect until October, giving the state time to develop an assessment to determine what services the kids need.

Williams said there's no way to know how many people might benefit from the change because there's no good count of the number of Kansans with internal head injuries.

But Minds Matter is already lining up new clients.

"We've got probably 25 who could come on pretty quickly," Williams said. "But we're also getting a lot of folks off, so I'm not sure it's going to increase the numbers that much and I don't know anyone else who's identified that many people."

Antoinette Hunter is one of the 25. Williams said Minds Matter staff is already working on finding her housing (which is not covered by the Medicaid program).

Then she will be assessed to see what services could help her live as independently as possible, a list that could include physical therapy, occupational therapy, speech therapy, cognitive therapy and behavioral therapy.

"She probably won't need all of those," Williams said. "She'll develop her own goal plan and tell us what she wants to do, once she's home. All of those therapies will be based on whatever goals she has."

Hunter said the first thing she wants is to get in better shape, to get help finding exercises she can do to get up and out of bed and moving.

She has not gotten that at the Overland Park Center for Rehabilitation and Nursing -- one of the lowest-rated nursing homes in the area.

"I've been sitting here wasting away," Hunter said. "I missed three birthdays in here. It will sure be a big help for me. I just can't wait to go."

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