By Rose Hoban

Becky and Larry Knowles’ son, Michael, was 26 years old when the car he was riding in was involved in a collision. One side of Michael’s skull was crushed; he lost the vision in one eye and has only partial vision in the other.

That was 20 years ago.

In an instant, Michael went from being an active young man to someone with a traumatic brain injury who needs help walking, has speech problems and loses his balance easily.

“Michael remembers his life before his accident, so it makes it very difficult,” Becky Knowles said. “It’s frustrating for him that he can’t go out in the community and do things on his own.”

Michael still lives with his parents, who care for him all day, every day, except for the days when the Knowles come to Raleigh to advocate on behalf of people with traumatic brain injury.

They were at the legislature on Wednesday when the Joint Legislative Oversight Committee on Health and Human Services subcommittee on Traumatic Brain Injury unanimously approved recommendations that would enhance care and services for people with TBI.

After several months of hearing testimony from providers and family members of people with TBI, the committee is recommending that lawmakers appropriate $2.2 million in recurring state dollars that would cover a wide array of services to Medicaid recipients with TBI.

That money would also trigger federal dollars that match state dollars at a rate of two to one, meaning there could be as much as $6.6 million in services for TBI patients under a proposed Medicaid waiver.

“I think this is a wonderful first step,” said Patricia Porter, a speech-language therapist who has consulted with the General Assembly on TBI issues for several years. Porter is the former head of developmental disability services for the state Department of Health and Human Services.

“We’ve known for a long time that people with traumatic brain injury have been underserved in North Carolina,” she said. “This is a small and absolutely critical first step toward focusing on this population, which is the largest-growing population of people with disabilities in this state.”

Medicaid coverage

This past year, legislators earmarked about $2.3 million in money to pay for TBI services. That money goes to the state’s mental health management agencies to spend on services for people who don’t qualify for Medicaid or don’t have insurance to cover their treatment and supportive services. Some of that money goes to the Brain Injury Association to do training and family support.

[pullquote_right]Did you know NC Health News is not-for-profit? We depend on our readers to keep this service going. Please consider an end-of-the-year donation.[/pullquote_right]The new money would be in addition to what’s already being spent now and it would be targeted at people who are Medicaid eligible.

Many of the services needed by people with TBI are not covered under North Carolina’s Medicaid plan. Those services include things like day programs at brain injury clubhouses; longer-term physical, occupational or speech therapies; or paying for assistive devices such as an iPad that someone who has trouble speaking can use to communicate.

One problem for people with TBI in recent years has been new limits on the provision of personal care services for people with disabilities. In the past, people who could dress and feed and complete their activities of daily living could also get help for personal care services such as prompting and cueing.

The Knowles said that Michael was one of those people. He used to get 40 hours of personal care a week – someone to remind him what to do as he completed his daily activities, walk with him and monitor him when the Knowles aren’t at home.

Now his hours have been cut down to nine per week.

Carol Hornitz from the Brain Injury Advisory Council said prompting and cueing are essential to someone with brain injury, someone who can’t organize their life.

“They may be at a point where they don’t know what a toothbrush is,” Hornitz said. “They may physically be able to pick it up, but they don’t know what it is or what to do with it.”

“When you’re eliminating cueing and prompting,” she said, “you’ve eliminated that service for them, who desperately are in need of help and assistance in recovery.”

Drop in the bucket

DHHS staff need legislative approval to submit a proposal, known as a waiver, to the federal Centers for Medicare and Medicaid Services to allow for coverage of those items under North Carolina’s Medicaid plan. Final approval would have to come from the full legislature, but passage out of the subcommittee is considered a strong start. Porter said it’s the furthest any effort to support TBI has ever gotten in the legislative process.

Kevin Bausell from the Division of Medical Assistance said that once federal officials approve the waiver, the state could cover services to about 74 people in the first year.

No one is quite sure how many people have TBI in North Carolina. But according to Porter, the number could be 60,000 or more.

When asked whether serving only 74 people in the first year is a drop in the bucket, Porter said, “Not if you’re one of the 74.”

She also said that once the service is established, it can be scaled up statewide over time.

“What we were thinking is to have a phased approach, and that would be specific to one region of North Carolina,” Bausell told the committee. “We don’t feel like we have the amount of qualified providers and trainers for the TBI population.”

Bausell said he wasn’t sure which region of the state would be the first in which DHHS would roll out the services. He also said the state has not created a selection process for providing the services.

That was a concern for the Knowles, who are aging. Their other child, a daughter with Down syndrome, also lives with them, and they want Michael to get the assistance he needs to be more independent after they’re gone.

“I want to be sure that there’s an opportunity for my son, and I want an understanding and clear explanation of how this committee is going to come about picking the first group of recipients,” Larry Knowles said.

Correction: This article previously said that state money for TBI services went through the Brain Injury Association. The organization is actually contracted by the state to provide some services, but most services are provided by mental health LME/ MCOs.

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