ALBANY — On March 26, Troy resident and traumatic brain injury (TBI) survivor Caleb Brunick and his mother and caregiver, Jessica Camprone, joined local advocates to call on the New York State legislature to include a $1 million investment for Continuum of Care for Resource Facilitation for brain injury survivors in the Executive Budget. The Brain Injury Association of New York State (BIANYS) hosted the Advocacy Day press conference to shed light on the issue.
The accident happened when Brunick was 23. While on his way home from working as an opener for a comedy act, a tractor-trailer jackknifed in the road, and Brunick’s vehicle collided with it. The accident killed Brunick’s friend in the car and left Brunick with severe injuries and a TBI.
At the time, he had been living in Estonia to pursue his education. He would remain there for several months to receive intensive care before being transferred back to the United States to receive more treatment.
Brunick had to relearn how to walk, talk, eat, and breathe on his own. He far exceeded expectations for recovery; however, the journey afterward and returning to normalcy posed yet another challenge.
In the current system, it is on the patient to navigate the healthcare system to get further treatment and therapies for their brain injury. The Continuum of Care proposal would change this and establish a resource facilitation and care coordination program to address the needs of brain injury survivors, their families, and caregivers after they leave the hospital and continue the road to recovery.
Survivors, families, and caregivers will have the information they need and will be connected to doctors, rehabilitation services, and other community-based services, improving outcomes and preventing unnecessary hospitalizations and medical care.
Life after a TBI is a process that is “very difficult to navigate,” said Camprone. Speech and physical therapy were the easier therapies to locate; however, Camprone shouldered the immense responsibility of finding and identifying viable resources to help Brunick.
“Although everyone we’ve spoken to along the way has been wonderful, those services are very hard to find. Some of the services that Caleb has acquired through this, we could have acquired sooner,” reflected Camprone.
“The TBI waiver is something that he didn’t enroll into a while after,” she added. “That was me looking into what is out there for people who have acquired brain injuries. I didn’t even know that service was out there. I have to ask questions, do a lot of Googling, and research. From there, it was getting doctors’ approvals… It’s a very tedious process.”
“A majority of all the services that I have received were not done by me; they were done by my mother, who is my caretaker,” said Brunick. “She has been a tremendous help to enable me to do more.”
“I have interacted with so many TBI folk, and I’ve seen how they don’t have my level of support network. I feel bad for them,” he continued. “There is nothing I can do about that, but hope and pray that this [funding] enables them to do more. That is why we’re asking for $1 million. Am I saying that it will change the lives of everyday people? No, but it will make everything easier. “
To Camprone, increased funding would assist in bringing about a necessary systematic change to streamline the process and make it more efficient. “They should look at patients as their whole life, not just dismiss them once they can take two steps by themselves,” she said.
Questions she hopes will be systematically looked at for patients are: What is the survivor’s life like? How are they getting to appointments? Who is going to help them? How many services do they require? How will they return to a sense of normalcy?
“It’s really about returning to the quality of life and the best life that you can lead. That part of recovery really falls short,” she added.
Camprone also recognized how her parents supported Brunick’s recovery and how her circumstances allowed her to care for him. “I feel bad for the people where it is their story that it may be an older person, someone who is single, or someone who has a big family and can’t dedicate every second to their care,” she said. “I feel like those survivors get pushed to the side.”
Brunick hopes that funding for TBI survivors will allow them more time to ‘breathe’ and less necessity to rush through their recovery process without a proper support system. “Your whole life you put on the back burner,” said Brunick regarding recovery. “You fully shift to your health.”
Before Brunick’s accident, Camprone considered herself ‘uneducated’ regarding TBIs. “I knew that it existed, but I didn’t have any personal experience with survivors and never understood how much it encompasses not only the survivor but immediate family and their relationships,” she said. “Every part of your life is now changed. A TBI is a very invisible injury.”
Brunick and Camprone’s advocacy has led them down the path of teaching others and spreading awareness. “I think it’s important for people to understand that this truly can happen to anybody at any age at any time in their life,” she said. “A brain injury has no limitations— from an infant to someone who is 100 years old.”
“Every TBI survivor is different in what they can and can’t do,” added Camprone. “Take the time to understand. Don’t expect them to be the person that they once were, but don’t denounce the person that they are.”
Increased understanding and education are also essential to the systematic work of improving the quality of life for TBI survivors. On the community level, Brunick’s goal is to start the education process one person at a time.
“I think what people can do is start reading about it or looking into it. TBIs come in at different levels with their impacts,” said Brunick. “You can’t expect the person to be the exact same day in and day out. There has to be some give for understanding.”
Brunick’s dream is that people be taught about TBIs at a young age, starting in schools. “If someone had told me about the TBI world before— when I was in 6th grade— things may have had a different outcome,” he mused.
Since receiving his TBI in 2021, Brunick has ‘learned to live’ with it. He called it a newfound ‘gift’ that he has come to ‘appreciate.’ “When you receive a TBI, life is not over,” he said. “Yes, it sucks, but it’s not over. You live through what you live through.”
“Every day is a gift,” added Camprone.