Kate Berryan never left her daughter Hannah’s side after she was hit by a distracted driver in 2014. She credits first responders for reviving Hannah, who later spent four months in a coma. Her mother didn't expect her to wake up.
"I was talking to her about a new red Chevy truck that was coming out," Berryan said. "And at that exact moment, she woke up and the entire building at Helen Hayes [hospital] went crazy.”
But then the hardest part began: Trying to find care for a traumatic brain injury, or TBI, close to home.
“I knew something wasn't right," Berryan said. "We were really advocating with OPWDD, which is the Office for People with Developmental Disabilities, and we weren't getting anywhere. Nobody wanted to help us.”
It sparked a journey for the mother on her daughter’s behalf. She tried to bring attention to what she says is a deficit of care in the state for TBIs.
This week marks a realization of her work as an advocate after state Sen. Michelle Hinchey’s bill to conduct a statewide review of TBI care was signed into law.
“We don't have the services and the amount of services that we need to actually serve the number of people that are struggling with TBIs," Hinchey said. "And so while we have, we do have some care around the state, we don't have enough.”
The bill directs the TBI Services coordinating council to gather data and develop recommendations related to TBI care in New York. The recommendations are required to be completed within a year and posted on the New York State Department of Health website. Advocates for TBI care say this is important for increasing care in rural parts of the state.
“Here's (rural areas) just not the proper care for an individual that sustains a brain injury and their families and their caretakers. So we are seeing that we need more in-home health care aides," said Christina LeBeau, advocacy and engagement director for the Brain Injury Association of New York State.
Right now, Berryan lives in a rehabilitation center in Oklahoma. She said it breaks her heart to have to leave her daughter’s side. But she's hoping to bring her home soon to better local care.
“She needs to come back," Berryan said. "She needs to be back into her community. She needs to be with her family. It will help her thrive. And sadly, (adequate TBI care) doesn't exist.”