Hannah Berryan’s life was forever changed on July 12, 2014. Just 16 at the time, she was walking down Morton Boulevard in the Town of Ulster when she was hit by someone texting while driving, leaving her with a traumatic brain injury.

Luckily, Ulster Hose Co. No. 5 Fire Chief Shawn Heppner was several cars behind the scene when the crash happened. The instant emergency response saved Hannah’s life.

Ever since, Hannah, now 23, and her mother Katherine Berryan have struggled to find the help they need in the Hudson Valley and have been met with a lack of cooperation — and even simple communication — from the state Office for People with Developmental Disabilities.

The family has enlisted the help of Ulster County Comptroller March Gallagher, who is helping them as a pro bono attorney to navigate a sea of red tape spewed out by a system she says is broken. “I’ve worked with disability clients pro bono,” Gallagher said. That includes with this agency, she added.

“We're blessed March contacted us,” Berryan said. “It's really created movement.”

The family’s nightmare began when Hannah came home from the hospital after awakening from a coma and all the help she was getting just stopped. “At the hospital people are overseeing you,” she said. “When you come home that disappeared.”

She found herself on her own when looking for anyone medical personnel trained and certified for traumatic brain injury. “Hannah needs physical therapy, behavioral therapy,” Berryan said. “TBI is very multidimensional, and she received nothing.”

Berryan said Hannah still needed to finish school and she ended up going to a private school because her home district, the Onteora Central School District, was not set up to handle students with traumatic brain injuries. “It was supposed to be three years, she ended up doing less than a year before she graduated," Berryan said.

But once Hannah graduated the family was left in another lurch, Berryan said. The school district is done providing services, transferring that responsibility to OPDD. The state agency hasn’t done much of anything to help, she said.

“Hannah was not received, I was knocking at their doors, networking, asking for the simplest of things,” Berryan said. “They haven’t been able to produce one single resource.”

Now that her daughter is an adult, Berryan serves as her full-time caregiver under a consumer directed home care program. It’s her only job. She said the state pays her $11 an hour for her work, less than fast-food joints offering a $15/hour starting wage.

The family is working on a move to Long Island where they will be closer to the kind of services Hannah needs. Berryan might, Gallagher said, receive some increased benefits because Long Island is still more expensive to live in than the Hudson Valley, recent real estate surges notwithstanding.

Community members Daisy Kramer Bolle, Erin Cadigan and Peter Humphries, along with Gallagher, have launched a fundraising effort — click here for the GoFundMe page — to help with the move. They hope to raise enough to cover the first month’s rent and security, beds and other furnishings, moving costs, transportation needs for Hannah’s appointments until her benefits are transferred over, and a financial emergency cushion.

Berryan said the family is raising funds so Hannah can move to a residential community on a 16-acre horse farm owned by an accomplished equestrian.

The opportunity, Berryan said, sort of fell into the family’s lap after Gallagher had all but given up on the farm issue. Hannah absolutely loves animals and anything to do with farms, her mom said.

“We looked at farm communities in Columbia County, they were not the right thing,” Gallagher said. When they looked for experts who could help Hannah, they found them centered around SUNY Stony Brook on Long Island.

Now all they needed was a farm. That came in the form of a house being rented by a farrier, a tradesperson who repairs horseshoes. “It checked all the boxes — it has chickens, roosters and goats,” Gallagher said.

As the family seeks to make the move from a one-room cabin in the Town of Olive, Gallagher said she saw on social media the community trying to help right after Hannah’s accident, but she didn’t really know Katherine that well at the time. “We met as kids in Woodstock,” she said.

The family has received an outpouring of assistance from neighbors — food, medical support and financial assistance from St. John’s Roman Catholic Church. The Oakes family provided a storage unit for the family, the Table at Woodstock gave meals and groceries, and many others pitched in with groceries and supplies.

Now, after collaborating exclusively on Zoom, Gallagher is looking forward to meeting the Berryans once they make the move to Long Island. The COVID-19 pandemic only laid bare the lack of services and support available to those with traumatic brain injuries, she said.

“I reached out to Katherine, she was not getting the kind of therapies and services, medical care and financial support this family needed,” Gallagher said. Gallagher said she immediately passed on the family’s predicament to state Sen. Michelle Hinchey (D-Saugerties) and they worked with the senator’s constituent services team to help move things along.

Dogged determination

Gallagher said the family has also spent years trying to convince OPDD that Hannah needs a service dog for crucial help with seizure alerts, as well as grasping, gait, posture and behavioral issues she’s dealt with post-injury. Gallagher ended up filing a request for more details about the holdup.

“They refused to give us a dog,” Gallagher said. Still, it felt like a small victory because it represented the first time the family had any decision at all on medical treatment or therapy in six years of wrangling with OPDD.

Gallagher isn’t giving up on the dog though. “We’ll get her a dog,” she said. “Soldiers use these dogs all the time.”

Even as Hannah prepares to go to the farm community, Gallagher recalled how they dealt with the agency’s refusal to give a list of certified agencies. "Hannah is the one suffering the consequences of an agency funded to take care of her."

"We're gravely concerned people don't have access to information," Berryan said. People with traumatic brain injury end up getting lumped into autistic programming not specialized TBI programs.

And finding such a program came with no guarantee of access. "The family found people with experience with TBI, who do behavioral therapy in Beacon. OPDD refused to allow access to that person," Gallagher said.

Berryan said she and Hannah now feel forced out of the community by the OPDD refusing to do its job. And Gallagher reiterated her frustration over the family having to figure all these things out on their own. “This doesn’t make sense, it's not even a tax savings,” said the comptroller.

A request for comment by OPDD was not returned by time of publication.

Donations can be made online or by check to Katharine Berryan, PO Box 542, Shokan, NY 12481.