Survivors'
Voices
Matter.

Speak up, be heard, and create change.

The world needs more stories that only the survivors can tell.

By sharing your story with other survivors, legislators, policymakers, and healthcare providers, you help them understand brain injury and close gaps in care.

Your lived experience and what matters most—better outcomes.

Below are sample letters, including the important issue of dedicated waivers for TBI survivors in Virginia, that you can copy and paste—along with a link to connect you with state and national leaders.

Every survivor can find hope and a stronger future.

Survivors share their stories.

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How You Can Help Drive Change

Your voice is one of the most powerful tools for change.

By sharing your story with legislators, policymakers, and healthcare leaders, you help shape better services, stronger protections, and more informed care for people living with brain injury. Whether you’re just starting your advocacy journey or looking to do more, when you set goals and speak up with confidence, you turn your experience into better outcomes for others.

Legislator Lookup

Virginina Brain Injury Council

Template Letter to Legislators

Dear [Legislator Name],

My life changed significantly after a brain injury, and I am writing to share how the current gaps in Virginia’s care system impact my daily recovery. While I strive for independence, navigating fragmented services often feels like an uphill battle. I am calling on your leadership to prioritize outcome-focused legislative solutions for survivors.

Specifically, I urge your support for:

• Expanded Access to Essential Services: Funding community-based programs that provide long-term stability.

• Seamlessly Coordinated Care: Streamlining communication between health systems to prevent survivors from falling through the cracks. We need effective managed care options through Medicare, Medicaid, and private insurance.

• Reliable Accessible Transportation: Ensuring affordable, consistent para‑transit and transportation options so survivors can reach medical care, work, and community activities.

• Stable, Accessible Housing: Increasing the availability of safe, affordable, and accessible housing options for people living with brain injury.

• Robust Program Support: Increasing state investment in Virginia’s existing brain injury resource networks.

Your support will help ensure that survivors across our Commonwealth have a clear path to recovery, independence, and community participation. I look forward to your response on these vital issues.

Warm regards,
Your Name
Your Address

Template Virginia Legislators: Dedicated TBI Waivers

Dear [Legislator Name],

We, the citizens, brain injury survivors, caregivers, case managers, and medical advocates of the Commonwealth of Virginia—joined in purpose with our community leaders and state advisors—are writing to urge the Virginia General Assembly to correct a structural gap that is leaving thousands of vulnerable Virginians behind.

Our demand is clear: we call on our legislators to establish a dedicated, fully funded, independent Virginia Traumatic Brain Injury (TBI) Waiver, separating specialized brain injury services from the limitations of the current Developmental Disability (DD) waiver framework.

By trying to stretch a framework built for a completely different population, our state has created a systemic gap in specialized resource facilitation. Over 14,000 individuals remain backlogged on state waiting lists for DD waivers. Meanwhile, dedicated community providers are left stretched to their limits, frequently relying on private donations for significant portions of their budgets just to provide fundamental case management to those in need.

A Unified Crisis Requiring Direct Legislative Action

For years, frontline nonprofit organizations like the Brain Injury Association of Virginia (BIAV) have worked tirelessly to handle crisis navigation, education, and case management for survivors. Simultaneously, the Virginia Brain Injury Council (VBIC)—composed of survivors, family members, and medical experts—has diligently fulfilled its role advising the state on necessary program improvements.

Even our state program administrators within the Department for Aging and Rehabilitative Services (DARS) and the Department of Medical Assistance Services (DMAS) work around the clock to maximize every available penny. Yet, despite the collective expertise of these organizations and administrators, their hands are tied by a broken statutory framework.

Forcing our administrators to squeeze a rapidly growing population into a system built for a completely different set of needs creates an operational gridlock. It forces community providers to heavily rely on private fundraising just to keep vital programs running and restricts our state agency leaders from deploying truly specialized neurobehavioral and rehabilitation resources.

Moving Beyond Deadlocks in House Appropriations

Our community has felt deeply stuck by the ongoing lack of traction within the House Appropriations Committee. Our state administrators and advisory councils do not need more underfunded mandates or temporary study committees; they need the General Assembly to structurally fund a dedicated, independent waiver.

Funding a TBI waiver is not a fiscal burden—it is a common-sense, fiscally responsible investment that helps individuals recover their independence and actively prevents the far higher long-term costs of institutionalization, crisis medical care, and emergency interventions.

While organizations like BIAV build structural safety nets and VBIC advises on community trends, individual citizens must remain vocal to build true legislative momentum. A real solution to separate TBI from the DD Waivers is long overdue. HB 1064, which sought to establish an explicit neurobehavioral waiver program, failed to pass in 2024, but our combined community of survivors, providers, and advocates is not giving up.

Why is this important?

Why is this critical for Virginia families?

The human cost of these systemic budget delays is devastating. Thousands of Virginians living with brain injuries are barred from critical waiver support simply because of their age at the time of injury.

An estimated 300,000 to 350,000 Virginians live with a disability due to a brain injury, including roughly 166,000 to 168,000 individuals specifically living with disabilities caused by traumatic brain injuries.
Approximately 28,000 individuals sustain a brain injury in Virginia each year.

When a person survives a severe brain injury, the medical crisis does not end at hospital discharge—that is exactly when the lifelong logistical and financial challenge begins.

Risk of Nursing Home Placement: Without a dedicated TBI waiver or access to appropriate community resources, adult survivors are routinely forced into geriatric nursing homes long before their time.
Lack of Rehabilitative Funding: The CCC+ waiver only provides basic custodial care (such as bathing and dressing). It does not fund cognitive retraining, speech therapy maintenance, or behavioral modifications. Failing to provide these services means survivors miss critical windows of recovery, turning treatable deficits into permanent dependencies.
Unfair Burden on Families: When the state fails to provide dedicated waiver slots or residential support, the entire burden of 24/7 care falls squarely on family members, impacting their ability to work and survive financially.
Crisis Exposure: Without specialized neurobehavioral waiver programs to support survivors safely in their communities, individuals are at an exceptionally high risk of experiencing homelessness or being unjustly funneled into the criminal justice system due to secondary behavioral changes caused directly by their brain injury.

We call on our Virginia legislators to take notice, respect the guidance of our state advisory councils, unbind the hands of our program administrators, and pass a dedicated TBI Waiver. No longer should our survival be treated as an administrative afterthought.