More than surviving: Brain injury patient, mother navigate maze to get care

After more than a decade managing the care of her daughter following a traumatic brain injury, there’s one image that sums up the complicated, confusing, convoluted and time-consuming process for Rebecca Conway: a maze.

There’s a beginning and an end, but no easy route to navigating the web of organizations, piles of paperwork and ranks of bureaucracy, she said.

“That is honestly what it feels like,” said Conway, 47. “It’s some sort of a convoluted path that nobody can really get a clear direction on.”

In 2007 Conway’s daughter Erica suffered a traumatic brain injury, or TBI, at the age of 16, leaving her in a coma for months and starting a long road to recovery. It also started countless hours on the phone and filling out paperwork to make sure that Erica got the care she needed, a process that has been anything but easy.

After a lot of effort, she still comes up against walls, having to backtrack and find a different route to try. But on Thursday, Erica Conway was welcomed into her new home, an alternative family living home in Asheville, which is good news for the Conways, and a step closer to the end of the maze.

“I wholeheartedly believe that her best chance at being successful is being in a therapeutic (alternate family living) environment,” Rebecca Conway said.

That’s because there’s someone there that’s essentially like a parent, but isn’t so emotionally involved and has the backing of an agency and provider, allowing both Rebecca and Erica Conway to lead more independent lives.

“It’s a relief,” Erica Conway said Thursday, just minutes after being welcomed into her new home with balloons and more. “It’s beyond a relief.”

Traumatic Brain Injury is an injury that can change the way a brain normally functions, caused by an external force to the head, and according to the Centers for Disease Control and Prevention, is a leading cause of injury-related death in the country.

Those injuries can affect cognitive function like attention or memory, motor function, loss of hearing, vision and other sensations or emotion, and lead to depression, anxiety, aggression, impulse control or personality changes.

The CDC estimates about 2.8 million TBI-related emergency room visits in 2013, when TBI was a diagnosis in more than 282,000 hospitalizations.

According to the CDC, the total cost of emergency room visits, hospitalizations and deaths related to TBIs is more than $82 billion annually, including medical and work loss costs.

March was Brain Injury Awareness Month in North Carolina, and the proclamation signed by Gov. Roy Cooper states that more than 201,000 state residents are currently living with the long-term effects of a brain injury.

In that environment, her mom can still be close, providing relief for the caregiver whenever it’s needed and still able to pick her up for dinner or a long weekend.

“I want to be an extra support,” Rebecca Conway said. “I don’t want to be the only support.”

But it’s not been easy to get there.

One example is finding transportation. Erica Conway qualifies for transportation services under the Americans With Disabilities Act, but it took three months to actually get it sorted out, leaving Rebecca Conway wondering where the protocol, process and consistency are in these programs.

“It’s very difficult to find services and find providers who work with individuals with brain injuries,” said Karen Keating, regional coordinator with the Brain Injury Association of North Carolina.

Part of the reason behind that is just the unique nature of brain injuries themselves. As Keating puts it, “If you’ve seen one brain injury, you’ve seen one brain injury.”

It leaves people piecing together the puzzle on what services are needed, what they need to do and where they need to go, Keating said.

Her own son suffered a brain injury in a car accident, and she knows first-hand what it’s like to be left needing support and resources once out of therapy for the injury.

The alternate family living situation is just the latest step for the Conways, who moved to North Carolina specifically for programs like Hinds’ Feet Farm, an organization that offers meaningful day programs for survivors of brain injury.

Living in Hereford, Texas, a small town in the panhandle known as the Beef Capitol of the World, there just weren’t many resources, and Rebecca Conway said, “There definitely was some restlessness in seeing my daughter simply survive. We wanted to see potentially what she could develop or grow or build for a life.”

Asheville was one of the areas they researched, finding Hinds’ Feet Farm.

So Rebecca Conway drove the more than 20-hour route from Texas to North Carolina to check out the program. The day she visited, the group was at Warren Wilson College, where brain injury survivors were meeting with college students and talking in small groups of four or six each.

She couldn’t tell who were brain injury survivors and who were students. They were discussing fitting in and standing out.

“Everybody fits in somewhere and everybody stands out somewhere,” Conway said. “The only place my daughter really fits in is Hinds’ Feet Farm.”

That’s because the organization takes a lot of honest approaches to whatever deficit a person has, instead of shoving it under the table and pretending like it doesn’t exist, she said.

On day one in North Carolina, Conway walked into the local Vaya Health office with a stack of paperwork and her daughter, ready to get all checked in with the managed care organization that oversees Medicaid and other government funding for services related to mental health, substance abuse and intellectual or developmental disability needs.

She was given a card with an 800 number on it and told to call that intake number.

Disheartened, Rebecca Conway called from her couch to do the intake. While it went well and the representative was pleasant over the phone, she was told to fax in the paperwork, which she did at her then-husband’s workplace, careful to make sure everything was in order and praying the machine didn’t jam.

“It’s more like dealing with paperwork than dealing with people,” she said.

Conway describes being in meetings with representatives from seven different agencies sitting around a conference room table, and leaving feeling like it was a waste of time.

It’s a long, arduous process for people to get what they need, Keating said. There’s no one path to send families down.

The biggest obstacle, consistently, is funding.

Erica’s accident happened in 2017, when she was 16. She was horsing around on the hood of a moving car driven by a good friend and fell. She was transported by helicopter to a hospital in Amarillo, Texas.

Rebecca Conway, two-and-a-half hours away working a dress rehearsal for a production at Texas Tech University that she had designed costumes for, turned in her paperwork and left, headed for the hospital.

Conway spoke to the neurosurgeon on the phone en route, who told her Erica would need surgery to save her life. The surgeon ended up removing her right frontal lobe, telling Conway that the injury was among the worst he’d seen.

There was so much pressure on her brain it came out of her skull during surgery, and she was in a coma for three-and-a-half months.

“You don’t get prognoses. They don’t say, ‘In about two weeks, she’ll be off the ventilator and breathing,’” Rebecca Conway said. “They don’t give you an idea with a brain injury.”

But Erica has recovered tremendously, described by the neurosurgeon as the first brain injury patient he’s had to actually recover and progress into having a life rather than just surviving.

She’s had a good recovery, Rebecca Conway said, but the struggle is being able to provide for that recovery.

“Yes, she’s going to survive, we know that, but now I want her to have the opportunity to thrive, to find that niche,” she said.

She doesn’t want her daughter to become boxed into a life of waking up, taking medication, watching TV, taking a nap, eating lunch, coloring, eating dinner then going to bed over and over again.

“That’s not a life for someone who’s 27,” she said.

Conway now works as a contractor with Flat Rock Playhouse, which she said has been very supportive and as flexible as possible. But if she’s going to be able to function as an adult and a community member and pay her bills, she can’t provide the level of care that Erica needs all by herself, which is why the alternate family living situation is such a good fit.

“I’ve watched my mom struggle these past 12 years,” Erica Conway said. “She deserves a life of her own, and I deserve a life of my own, and that should not butt heads at all.”

What it boils down to is the need for more support for care providers, Rebecca Conway said.

At the time the accident happened, Conway’s ex-husband had recently started a job that provided insurance for the family, but the accident quickly topped the first-year cap of $25,000 — the helicopter flight alone was around $13,000 — but since Erica was 16 at the time, she qualified for Medicaid assistance.

Erica receives funding for her care through Medicaid, but has to find separate funding sources within Medicaid for different programs.

She qualified for a new funding stream called long-term community supports, but Easter Seals, the contractor providing the service, had to lobby Vaya Health for an increase in funding to cover the cost of the alternate family living and there are worries that the funding stream may not be sustainable. Rebecca Conway said the caregiver working with Erica hardly makes minimum wage for her time.

Erica also qualifies for a Medicaid Innovations Waiver, having received her injury before age 22, but Conway said they have been on the wait list for four years, and she has been told to expect another decade or so.

In North Carolina, Keating said, brain injury is considered a developmental disability, which is where the state funding comes from.

But there are a lot of resources out there, including the Brain Injury Association of North Carolina and DisAbility Partners in Sylva and Asheville, where Associate Director Eva Reynolds and staff help people deal with the difficulties of the system.

The work DisAbility Partners does most of the time is one-on-one, and it can be things like sitting with them in meetings and helping empower parents and grandparents to be a part of the process.

Reynolds said the group is a “work with,” not a “do for” agency, and it helps folks with post-secondary issues like further education or employment, hosts social gatherings and even a computer lab.

DisAbility Partners and the Brain Injury Association also advocate on the state and federal level for a wide range of changes, but Reynolds said there’s not really any low-hanging fruit in that area, encouraging folks to be their own self-advocates.

Keating said she hears stories like the Conways’ over and over, and that all survivors want to get back to normal, to get working and have relationships — things that anybody would want.

“One of the biggest things is just raising awareness, the fact that it is more prevalent than people realize,” she said.

It’s also important to look at people on an individual basis as far as their needs when it comes to day programs, housing, employment and recreation.

“There’s just not enough access to these things,” Keating said.

Rebecca Conway compares the situation to a person who fell off a ship and is drowning, saying that’s how she and other families feel, like they’re being asked to save themselves.

“I will fight for her until I have no fight left in me. Then I’ll take a nap. Then I’ll fight for her again,” Conway said. “I moved here to North Carolina to give my daughter a quality of life.”

Now Conway said she feels hope for the future, with plans to become an advocate rather than a caregiver, and Erica is looking to enroll in Asheville-Buncombe Technical Community College. She’s interested in speech, creative writing and theater, as well as equine therapy programs in Tryon.

Erica said she didn’t know how she was going to achieve that goal, but she’ll continue to fight for it. And Rebecca Conway wants to make sure there’s potential for her to have a better life.

“How am I going to do that?” she said. “I’m going to keep asking questions, show up on doorsteps, shed a tear, share her story. I’m going to scream it from the top of the mountain, because somebody has to hear. At some point, the lady on the other end of the phone is going to be the right person, and I’m going to get what I need for my daughter.”

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Katina Tate