Getting what's needed from the U.S. health care system can be difficult, but it’s even more challenging for people living with traumatic brain injuries.

“One hundred-and-fifty-seven New Yorkers every day are sustaining a brain injury,” said Eileen Reardon of the Brain Injury Association of New York State.

Traumatic brain injury (TBI) advocates rallied Wednesday at the state Capitol in Albany to call on state leaders for further assistance.

“If we had all of the knowledge that we know we should be able to have, we would be able to continue to progress with the injury,” said Azzura’e Wilson.

Having sustained a traumatic brain injury when a drunk driver crashed into her family’s car in 2012, the Bronx woman’s life was changed forever.

“My grandmother and my father were stuck under the car for three hours, but I got ejected out the back window,” she explained. “I got hooked onto his truck somehow. He dragged me for half a mile, and then I got run over by another car.”

Gaps in the continuum of care impact not only survivors themselves, but their caregivers and families.

“You’ve got to navigate everything on your own,” Reardon said. “From insurance companies, to potentially legal, to potentially Medicaid. It becomes extremely overwhelming.”

In the Keystone State in 2023, Akiko Medley’s brother was involved in a car crash in which he experienced a traumatic brain injury.

“He had insurance in Pennsylvania, which was Medicaid, but I had to terminate it to bring him here to reapply,” she explained. “It was really silly.”

But the process did not deter Medley from becoming her brother’s caregiver.

“He tends to wander away. He has some cognitive impairment, so you have to be there to explain things to him,” she said. “It’s mostly monitoring him, making certain he has personal care.”

Medley admits, it’s tough work and that she is stretched so thin that her daughter chose nursing school in hopes of being able to share the burdens of being a caregiver. But she says they wouldn’t have it any other way.

“I’m happy that I was able to find him, that I was able to provide all this support. And being able to advocate and to get him to where he is today,” she said.

These are all reasons why advocates are calling for a $1 million commitment from New York state to help establish a neuro-resource facilitation and care coordination program.

“The continuum of care takes that pressure and really provides that level of support and advocacy to that family,” Medley said.