shows a young man in a wheelchair with other family members, one is playing a guitar
Zack Irby sits with family in their living room, while he gets entertained. Photo courtesy: Irby family

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By Thomas Goldsmith

Carol Ornitz wants to make sure that her only son, Mark, 45, continues to live at home instead of in a nursing home, despite the disabling traumatic brain injury he sustained in a bike race 13 years ago.

“He’s not confused enough not to know where he is put,” North Raleigh resident Ornitz, 73, said this week. “Just because he has these other moments, it doesn’t mean he wouldn’t know.

“He’s actually reading things. He responds to some news reports; he responds to football and baseball games.”

About the waiver

The state Department of Health and Human Services announced April 20 that a four-county pilot project will kick off May 1 designed to facilitate rehabilitation for people who suffered TBI injuries at age 22 or older.

Actual services will likely begin in August for people who take part in the program’s coverage area of Wake, Durham, Johnston and Cumberland counties.

Medicaid is the federal health insurance program for low-income people and those with disabilities. A waiver allows DHHS programs to provide designated clients with help beyond the level specified in state and federal Medicaid rules.

“This waiver is an important milestone in North Carolina’s commitment to improving the life and well-being of individuals who experience a traumatic brain injury,” said Dr. Mandy Cohen, DHHS secretary.

To have the waiver approved by the federal Medicaid authorities, DHHS had to show that the program would save money, include input from stakeholders, use patients and families to drive the planning process, supply a choice of providers, allow for appeals, and meet assessment and monitoring conditions, among other requirements.

The TBI waiver will make possible Medicaid reimbursement for “extended occupational therapy, physical therapy and speech therapy; supportive services such as respite, home and vehicle modifications; and assistive technology, equipment and supplies,” DHHS said. Medicaid will also pay for Medicaid beneficiary services including supported employment, life skills training, cognitive rehabilitation and day supports.

Advocates such as Ornitz and Jeannie Irby, of Burlington, place a high value on the long-term improvements possible for their family members. Irby has been focused for five years on care for her son Zack, 28, who has lived with a TBI since a horrific car wreck.

Like many caregivers, Irby has patched together public, private and nonprofit resources to augment the considerable out-of-pocket expenses needed for someone to receive care in settings that encourage his development.

“I’ve gotten him into a two-day-a-week day program at the Lamb’s Chapel,” Irby said. “He goes to be part of a group. Being with people that aren’t necessarily like him, I think it’s helping him come to terms with his disability. It took him a while to acclimate.”

Medicaid and the state of North Carolina recently announced they’ll spend a combined $6 million for a higher level of services for people such as Mark and Zack, to be delivered in the community and not in expensive long-term care settings. The program will include such life-advancing services as occupational, speech and physical therapy; cognitive rehabilitation; supported employment and assistive equipment.

But there’s a catch: The Medicaid pilot program applies, at first, only to residents of Wake, Durham, Johnston and Cumberland counties, the catchment area for Alliance Behavioral Healthcare. Lasting for three years, it will touch 47 people the first year, 99 the second and 107 the third.

That means that Mark Ornitz’s family can at least apply for additional services because they live in Wake County, but not Zack Irby’s family, at least for now.

“We need this work to be expanded”

Advocates want the wave of help to reach the much wider group of the state residents who also need it, as many as 200,000 by one estimate. Citing support from legislators such as Sens. Tommy Tucker and Louis Pate, Reps. Nelson Dollar and Verla Insko, and former Rep. Marilyn Avila, activists said this week they appreciate the new aid and hope that it will be scaled up statewide sooner than later.

“We at minimum would like for it to (expand) right after three years,” said Ken Jones, executive director of the Brain Injury Association of North Carolina. “There’s a process of getting the providers prepared; that will probably be something that is manageable the first year.”

Said Irby, “Even for those four counties, it’s not going to be a tremendous amount of help.

We need the money to be expanded and we need this work to be expanded into other counties because the need is so great.”

Zack Irby gets help eating dinner. Since his traumatic brain injury, Irby’s family members give him dozens of hours of care each week. Photo credit: Irby family

For families with a member affected by TBI, a number of ifs remain. Ornitiz can apply for more services for Mark, who already receives some care via Medicaid, but there’s no guarantee he’ll be accepted.

“I’m sure there are other people who have acute needs coming out of the hospital,” said Ornitz, who spends as much as 16 hours a day caring for her son. “They’re going to have to make some tough choices — I understand that.”

Putting the change into perspective, Ornitz said the first attempt at a waiver for adults with TBI came 25 years ago. Other attempts followed in 2009 and 2013. The General Assembly passed legislation allowing the waiver in 2015 and the Centers for Medicare and Medicaid Services recently approved it.

“I think this community has waited long enough,” Ornitz said.

The years of delay that have occurred could have had significant impacts on thousands of TBI patients, advocates say.

“The brain has something called neuroplasticity — it can create new pathways around the injury,” Ornitz said. “But it takes a lot of years to do that.”

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Thomas Goldsmith

Thomas Goldsmith worked in daily newspapers for 33 years before joining North Carolina Health News. Goldsmith is a native Tar Heel who attended the UNC-Chapel Hill, and worked at newspapers in Tennessee...