A look back at the first three years of the ACL Traumatic Brain Injury State Partnership Program in Florida, and what comes next.
An estimated 4.9 million Floridians are living with an acquired brain injury, counting traumatic brain injury, stroke, epilepsy, and brain tumor. Three years ago, the state had no coordinated way to connect any of them to help. Today Florida has a standing advisory board, a five-year action plan, a network of trained resource facilitators, and an information line open to all 67 counties.
That system was built under the federal Administration for Community Living’s Traumatic Brain Injury State Partnership Program, which the University of Florida took on in 2023, and with it the role of Florida’s lead agency for brain injury. The work runs through UF’s BRAIN Center in partnership with Brain Injury Florida (BIF). Here is what three years produced.
“We used to treat brain injury as something that ends at discharge,” said Michael Jaffee, MD, director of the UF BRAIN Center and chair of neurology. “It is better understood now as a chronic condition, which does not mean symptoms forever. It means the support has to still be there years later, when somebody needs it.”
A Statewide Voice: The Florida Brain Injury Advisory Board
We convened the Florida Brain Injury Advisory Board with 18 members representing every region of the state. It has since grown to 20, more than half of whom live with brain injury themselves, deepening both its clinical expertise and the lived experience at the table.
The Board’s first task was to listen. Through a statewide needs assessment and a May 2024 listening session, we gathered 386 responses from survivors, caregivers, and providers across 41 of Florida’s 67 counties. What we heard reshaped our priorities:
- 48% of survivors responding rated their quality of life as poor or fair.
- 84% of respondents reported earning below Florida’s average income.
- 40% of respondents did not know how to reach a brain injury professional who could help them find resources.
- 45% of respondents said a motor vehicle crash caused their traumatic brain injury.
- 40% of respondents sustained their first brain injury in childhood.
“We asked Floridians living with brain injury what they needed and they answered in plain language,” said Denny Armington, MHA, founding board president of Brain Injury Florida. “We are addressing day-to-day needs and priorities! We did not sit in a room and invent priorities.”
A Plan for the Whole State: The Florida Brain Injury Action Plan (2025–2030)
Those findings became the foundation of the Florida Brain Injury Action Plan (2025–2030), drafted at a stakeholder retreat in Lake Nona in January 2025, formally adopted by the Advisory Board, and shared with the public through a statewide webinar in June 2025.
The plan set three priorities: improving quality of life, building education and awareness, and strengthening the service system. Three workgroups, each chaired by a Board member, now meet monthly to move the plan forward. It is in its second year of implementation.
Help That Reaches People: The Sunshine NeuroResource Facilitation Network
A plan matters only if it reaches the person who needs it. The Sunshine NeuroResource Facilitation (NRF) Network grew to seven NeuroResource Facilitators across six regions, and the statewide Brain Injury Information Line is open to every one of Florida’s 67 counties. In 2025 the line handled 413 information and referral contacts from 40 counties, a quarter answered directly by trained volunteers and the rest connected to facilitators for deeper support. To meet families where they are, BIF facilitators completed Certified Brain Injury Specialist training through the Academy of Certified Brain Injury Specialists (ACBIS).
“We put facilitators in the field because the research is clear,” said Drew Nagele, PsyD, ABPP, founding vice president of Brain Injury Florida. “When somebody helps a person with a brain injury navigate a system scattered across dozens of agencies, outcomes change. Resource Facilitation is not just a promising idea; it has been demonstrated in research to be effective at reducing recidivism and getting people back to productive activities in their lives.”
Standing With Families: Support Groups and Everyday Tools
Recovery does not end at discharge, and neither does the need for support. Brain Injury Florida convenes Florida’s brain injury support group leaders and helps new groups get started, so that a family looking for a room of people who understand has one to find. BIF also maintains the statewide directory of those groups.
The Advisory Board’s Quality of Life workgroup also put a practical tool directly into people’s hands: the Brain Injury Wallet Card, developed with Disability Rights Florida, giving a person a simple way to communicate their injury and needs to first responders, clinicians, and law enforcement. Roughly 1,700 cards have gone out across the state.
Education and Awareness Across Florida
For 40% of respondents to the needs assessment, the first brain injury came in childhood. That is why the education work starts in schools. Combining UF’s research reach with BIF’s grassroots presence, we carried brain injury education into communities all year:
- Joint webinars presenting the Florida Brain Injury Action Plan to the public.
- Talks and exhibit tables at conferences and community events around the state.
- Brain Awareness Week outreach in K–12 schools, reaching children with prevention messages early.
- A concussion and brain-safety talk for parents, delivered through Alachua County’s parent-education program and now being offered to districts across the state.
- Our inaugural Statewide Brain Injury Research Symposium, held alongside BIF’s Brain Injury Education Conference, putting the research and the community programs under one roof.
This education work also deepened two partnerships beyond Florida’s borders. It draws on the national materials of the Brain Injury Association of America, whose Brain Injury Action Coalition is chaired by the BRAIN Center’s director, Dr. Michael Jaffee. And the DJ Lagway Foundation’s gift funds the concussion education cards now moving through Florida schools, youth sports leagues, and community partners.
Milestones Worth Marking
- The inaugural Statewide Brain Injury Research Symposium (May 2026) brought together faculty from universities across Florida for research, clinical translation, and trainee scholarship. Attendee feedback launched a new quarterly virtual Lab Spotlight series. The symposium is now an annual event.
- Advisory Board member Alexandra de Roos was crowned Miss Florida 2026 on a brain injury awareness platform, The Blue Project, and went on to win the Quality of Life Award at Miss America in West Palm Beach in September 2026 for that advocacy. She carries the cause to audiences we could never reach alone.
What Comes Next
ACL has renewed the program for another three years, through September 2029. The next phase extends the NRF Network into Florida’s rural regions, adds brain injury screening through the Online Brain Injury Screening and Support System (OBISSS), run by the National Association of State Head Injury Administrators (NASHIA), in settings where injuries too often go unrecognized, and continues to strengthen the Advisory Board and the statewide Action Plan.
“We built the parts,” Jaffee said. “Now they have to reach the person in a rural county who still does not know any of this exists.”