Building a National Action Plan

By Lauren Moore, Marketing and Communications Manager, Brain Injury Association of America

During the Brain Injury Association of America’s (BIAA’s) annual trip to Washington, D.C. in March, we will be launching a National Plan of Action – a groundbreaking effort to prioritize the voices, experiences, and needs of brain injury survivors. This ambitious plan seeks to establish a comprehensive framework for improving survivor outcomes through enhanced research, care, and community support.

These efforts follow in the footsteps of other groups that advocate for communities affected by chronic health conditions, explained Denver Supinger, BIAA’s Director of Advocacy and Government Relations. “This is a needed step for the federal government to take brain injury seriously and put it on the national agenda. We have bipartisan support for brain injury and brain injury systems, and we believe this will be well-received by members of Congress,” she said. “In coordination with our trusted partners, BIAA hopes to be a leading lobbying and federal voice around this, to create spaces in which various agency heads and leaders can hear and see the concerning gaps in our brain injury community to further support the need for the plan.”

The National Plan of Action calls for the creation of an advisory council of federal agencies, advocacy organizations, and people with lived experiences that would advise the Secretary of Health and Human Services on how to create a federal government structure that puts brain injury survivors first. Through this, the Secretary of HHS, in conjunction with their federal agency partners, would look at existing resources, costs, and barriers.

“Historically, we’ve advocated for the TBI Reauthorization Act, which funds programs in certain siloed agencies,” Supinger explained. While federal organizations like the CDC, Administration for Community Living, Department of Defense, Veteran’s Administration, National Institutes of Health, and Centers for Medicare and Medicaid Services, all touch the brain injury community, there’s little linkage of data, on-the-ground experiences, and progression within these agencies. “The National Plan of Action hopes to thread all that we’re doing across the nation into one space, so we can work in a more collaborative and effective manner,” Supinger added.

The National Plan of Action has several key components, including:

1. Recognizing both traumatic and non-traumatic brain injuries that occur post-birth, reflecting the diverse experiences of survivors
2. Focusing on improving survivor care, access to resources, and the coordination of services across the country
3. Including brain injury survivors and caregivers alongside medical experts to ensure survivor perspectives shape the plan’s actions and recommendations
4. Requiring annual evaluations of programs and outcomes, centering survivors’ well-being, and reducing financial and emotional burdens on families
5. Collaboration among federal agencies in providing comprehensive data, enabling better care and policy decisions that directly benefit survivors
6. Ensuring the plan delivers measurable outcomes by 2030, prioritizing survivors’ urgent needs

This effort places brain injury survivors at the heart of a coordinated national plan, addressing critical gaps in care, recovery, and support systems, and ensures survivors’ voices and experiences guide research, policy, and services. It will be the core focus of our legislative ask on March 5, as attendees of the National Brain Injury Conference and Awareness Day meet with their representatives on Capitol Hill. The conference will include a session led by BIAA about what to expect during meetings with Congressional representatives and their staffers, as well as tips for making your message heard.

Supinger said that it’s important for advocates to bring their passion and support for the National Plan of Action to their representatives’ local offices. “You have a more intimate touch in your own backyard,” she explained.