3

Examining Rehabilitative Care and Specialized Services for People Living with Lasting Effects of TBI

The workshop turned to an exploration of the care and services available to address the needs of those living with the lasting effects of traumatic brain injury (TBI). Speakers during the session highlighted the current state of rehabilitative care and specialized services, as well as gaps and barriers that pose challenges to achieving optimal TBI outcomes, and shared information on programs working to address such gaps. The session aimed to explore how different care systems and programs can rise to these challenges, ensuring that individuals with TBI are identified and supported at the right moments in their recovery. A panel featured examples of care programs focused on identifying solutions that better meet the complex and long-term needs of people living with TBI.

Stacy Suskauer, vice president of rehabilitation at the Kennedy Krieger Institute and professor at the Johns Hopkins University School of Medicine, introduced and moderated the session. Suskauer highlighted the complexity of managing TBI over a person’s life course, emphasizing the message heard throughout the workshop that TBI-related needs are often dynamic and individualized. She emphasized that people may continue to improve or face health declines years postinjury; different services may become needed, and care needs cannot be met using one-size-fits-all approaches. For instance, individuals with TBI who are also recovering from substance use may relapse as they reintegrate into community life. Children who sustained TBI early in life may experience complications in adulthood that they and their care providers do not connect to their childhood injury. These scenarios underscore the need for flexible, long-term support systems and integrating TBI awareness across all health care systems, not just within specialty rehabilitation services, she said. System-level challenges, such as the underidentification of TBI, that many individuals go unrecognized or may not seek care, and disparities driven by factors such as insurance status, underscore the need for improved screening, outreach, and timely treatment, Suskauer

said. Addressing systemic challenges will ensure individuals receive appropriate care when it can be most beneficial.

Before moving to panel presentations and discussions, three individuals living with the lasting effects of TBI shared their experiences and perspectives to inform the workshop (Box 3-1).

CHRONIC TBI CARE FOR VETERANS

Joel Scholten, executive director of physical medicine and rehabilitation at the Veterans Health Administration, outlined the Department of Veterans Affairs (VA) structured system of care for TBI and polytrauma. Containing 110 teams across the country, this system addresses the full spectrum of TBI severity and stages, treating veterans with mild, moderate, and severe TBI in the acute, transitional residential, and outpatient phases of care.

One challenge lies in identifying veterans with mild TBI from deployment who were not diagnosed immediately but later developed residual effects, often alongside multiple comorbidities. Unlike many health care systems, VA operates without insurance restrictions, he noted, allowing providers to focus on clinical need without limitations on the number or duration of therapy visits. However, care coordination remains a challenge even when resources are available, especially as veterans move from acute care to managing chronic TBI.

A cornerstone of TBI care is active veteran engagement and the integration of mental health into rehabilitation plans, Scholten said, describing the individualized rehabilitation plan as the VA hallmark of care for veterans with TBI and ongoing needs. An ongoing wellness plan is updated as clinically indicated and at a minimum on an annual basis. VA also collaborates with veterans’ service organizations to promote community reintegration through activities such as adaptive sports and encourages engagement beyond traditional clinical therapies. Despite decreasing stigma, mental health remains a barrier for some, making it important to embed these services directly into TBI rehabilitation and care plans. VA’s model benefits from having primary care providers collocated with rehab teams, creating a cohesive interdisciplinary approach to managing TBI as a lifelong condition, Scholten concluded.

POSTACUTE REHABILITATION SERVICES

Mark Ashley, executive chairman at the Centre for Neuro Skills, offered an overview of TBI rehabilitation services provided after hospital or inpatient discharge. Beginning in the 1970s, the field grew to over 1,200 facilities, some of which are accredited by the Commission on Accreditation of Rehabilitation Facilities, and now includes a wide array of settings such as outpatient clinics, residential facilities, in-home mentoring, and VA polytrauma transitional programs (Glenn et al., 2004; National Institutes of Health, 1998). Although individuals with mild TBI can benefit from postacute brain injury (PABI) rehabilitation, Ashley noted that it primarily serves those with moderate to severe TBI and complex neurobehavioral deficits. PABI rehabilitation is a vital component of recovery, Ashley

said, delivering functional, cognitive, and economic benefits. These settings enhance recovery, especially of procedural and episodic memory, because they provide environments that simulate or mirror patients’ actual living conditions.

Despite the proven effectiveness of PABI rehab, he highlighted an important barrier to access because of restrictive insurance structures and outdated funding models. Ashley noted that most covered rehabilitation designs are oriented toward short-term musculoskeletal rehabilitation rather than the extended, complex needs of neurologically injured patients. This mismatch restricts access to the treatment intensity and duration required for optimal recovery, he said, which is often outside of traditional hospital settings. For example, while optimal functional recovery is achieved after 210–240 days of rehabilitation, most TBI patients only receive about 90 days, suggesting many are discharged before reaching their full recovery potential (Ashley et al., 2018). Texas has taken a lead in addressing this gap by legislating against insurance exclusion of brain injury rehabilitation, while Medicaid programs still impose length-of-stay restrictions that can only be waived through a utilization review, he said.

Empirical evidence supports the clinical and economic value of intensive, long-duration PABI rehab, Ashley emphasized. A 2008 review showed that receiving intensive rehabilitation yields greater functional gains, shorter hospital stays, improved employment outcomes, and reduced long-term supervision needs (Turner-Stokes, 2008). Additionally, a study involving 51 TBI patients found that rehabilitation costs were offset within 14 months owing to reduced lifetime care needs (Turner-Stokes, 2007). Another study of 36 patients showed a $1.5 million average reduction in life care costs and improvements in Disability Rating Scale, Mayo-Portland Adaptability Inventory, and community integration scores (see Figure 3-1; Griesbach et al., 2015). Earlier admission to rehabilitation and younger patient age were both associated with better outcomes, though older adults showed higher scores in community integration, potentially reflecting familial and cultural support dynamics.

The current postacute care landscape is complicated by terminology inconsistencies and variability in care delivery, Ashley said, yet its necessity is underscored by the complex needs of TBI patients. Patients with TBI average 24 International Classification of Diseases, Tenth Revision (ICD-10) codes per hospital admission, compared to fewer than three codes for the general population, highlighting their medical complexity (Walker et al., 2012). A sharp decline in acute and inpatient rehabilitation lengths of stay since the 1990s has been associated with a 500 percent increase in postdischarge mortality (Ottenbacher et al., 2004). He called for broader adoption of evidence-based reimbursement models and care standards that reflect the biological complexity of brain injury and the principles of neuroplasticity.

TBI TRANSITIONAL CARE

Tolu Oyesanya, associate professor at the Duke University School of Nursing, outlined challenges in accessing TBI transitional care. Oyesanya’s research focuses on the transitional care needs of adults with TBI and their caregivers, particularly those discharged directly home from acute care. These individuals often face challenges including poor postacute health outcomes, difficulty managing symptoms, and struggles with care coordination and health care navigation (Ibemere et al., 2024; Oyesanya et al., 2021a,b,c). A lack of outpatient providers with TBI-specific expertise, disrupted continuity of care, and limited access to community-based resources, services, and supports exacerbate these issues, Oyesanya said, especially for people without health insurance. Social determinants of health play a role in shaping patients’ recovery experiences and access to care, she noted,

given the documented disparities in TBI outcomes associated with economic stability, age, sex, race or ethnicity, and language.

The burden of care frequently shifts to family members, who must help their loved ones manage complex physical, cognitive, and mental health needs, often without adequate guidance or support. In the absence of formal resources, caregivers rely on trial and error while also managing their own well-being and responsibilities. Despite widespread acknowledgment from both patients and caregivers of the need for more structured support during the first 4–6 months postdischarge, services remain fragmented. This period is critical for establishing recovery trajectories, she emphasized, yet many individuals are left without coordinated assistance, intensifying stress and impeding recovery.

There are no national guidelines for TBI-specific transitional care despite its proven effectiveness in other conditions such as stroke and heart failure, and this reflects a significant gap in U.S. health care policy and research, Oyesanya said. Transitional care, which ensures continuity and coordination between care settings, has been shown to improve outcomes across multiple populations yet remains underdeveloped in the brain injury field. Oyesanya emphasized the pressing need for the development of interventions tailored to the TBI population, including culturally and linguistically appropriate approaches. She identified strategies such as personalized education, care coordination, and community-based referrals as potentially effective but still underexplored in TBI contexts.

To address this unmet need, Oyesanya and her team are currently testing the effectiveness of the Brain Injury Education, Training, and Therapy to Enhance Recovery (BETTER) intervention at Duke University (Oyesanya et al., 2022, 2023, 2024). BETTER is a patient- and family-centered, culturally responsive transitional care model designed to provide support during the first 4 months following discharge, she said. It includes centralized support to help patients and caregivers navigate health systems, develop coping strategies, and connect to community-based resources. All program materials are available in English and Spanish. The intervention aims to improve patient quality of life and reduce caregiver strain, laying the groundwork for future expansion of evidence-based transitional care in the TBI field.

Oyesanya identified transitional care strategies that represent starting points for the development of TBI-specific transitional care programs:

• Identification of family caregiver(s) to support the person with TBI
• Discharge planning and preparation
• Patient and family needs assessment
• Goal assessment, setting, and support for goal achievement
• Referral to community-based services and resources based on needs and goals; services and resources may be TBI-specific

• Patient and family education and training on self and family management of TBI and on brain injury coping skills
• Medication and condition complexity management
• Care coordination and patient navigation
• Interdisciplinary provider collaboration and accountability
• Development of individualized urgent/emergent care plans
• Addressing patient and caregiver well-being
• Handoff to resource/service-providing entity for further support (e.g., national or state-affiliated brain injury association)

NORTH DAKOTA BRAIN INJURY NETWORK

Rebecca Quinn, associate director for the Center for Rural Health at the University of North Dakota School of Medicine and Health Sciences, described the role of the North Dakota Brain Injury Network (NDBIN) in addressing the needs of individuals with TBI across the state. NDBIN functions as an affiliate to the state brain injury advocacy organization, and it provides a toll-free hotline, resource facilitation, outreach, education, and training. The network actively supports 200–300 individuals at a time, most of whom are not connected to formal health care systems and are referred from community sources long after their initial injury. Many clients sustained their injuries 6 months to several years prior and received little or no rehabilitation at the time, having been discharged directly home. In rural North Dakota, access to brain injury rehabilitation and knowledgeable providers is extremely limited, she said, particularly given the state’s frontier geography and prior lack of a Level 1 trauma center.

Before the opening of North Dakota’s only Level 1 trauma center in 2018,¹ many patients were transferred out of state for acute and rehabilitation care, Quinn said, most often to Minneapolis or Craig Hospital in Colorado. Upon returning home, these individuals frequently were not connected to local services, with no continuity of care or referrals. This lack of postacute support created significant challenges in navigating recovery, she said, especially for those who had received care from institutions unfamiliar with North Dakota’s local resources. NDBIN steps into this gap by connecting patients and families with existing community services, supporting transitions in care, and helping individuals navigate the limited resources available in rural settings.

In addition to facilitating service access, NDBIN emphasizes education for both health care providers and families to improve TBI care management. Quinn noted that many local clinicians feel unprepared to manage

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¹ https://news.sanfordhealth.org/news-release/sanford-fargo-re-verified-as-level-i-adult-trauma-center/ (accessed August 31, 2025).

brain injury cases, so the network trains them to build competence in the absence of specialized expertise. Simultaneously, families are empowered through educational resources to become advocates and educators themselves, often guiding providers on how best to support their loved ones. This dual approach of enhancing provider preparedness and fostering patient–family advocacy is central to the network’s strategy to strengthen long-term recovery and care quality for North Dakota’s rural TBI population, she said.

MAINE DEPARTMENT OF HEALTH AND HUMAN SERVICES

Derek Fales, waiver services director at the Maine Department of Health and Human Services (MDHHS), described Maine’s comprehensive approach to supporting individuals with TBI through Medicaid-funded services and federal partnerships. Maine offers three distinct Medicaid programs that provide specialized care in skilled nursing facilities and through home and community-based services aimed at maximizing independence, safety, and quality of life. Additional support is available through community-based neurorehabilitation clinics that focus on improving daily functioning in work, home, and social environments. Maine also participates in the federal Administration for Community Living TBI State Partnership Grant Program, one of 31 states to do so. Although the grant provides only $200,000 with a required $100,000 state match, it funds essential services such as resource facilitation, educational outreach, support groups, and a toll-free hotline to connect survivors, caregivers, and families with critical information and assistance.

Fales emphasized the need for better TBI screening practices, pointing out that many individuals with a history of concussion do not recognize it as a brain injury and are often not asked about such injuries by health care providers. This gap is echoed by findings from a 2025 Harris Poll conducted by the Brain Injury Association of America, which showed that most respondents were not screened for TBI by their providers (Brain Injury Association of America, 2025). He said that MDHHS collaborates with behavioral health partners and uses the National Association of State Head Injury Administrators’ Online Brain Injury Screening and Support System (OBISSS),² a tool that evaluates lifetime exposure and symptomatology to identify brain injury in individuals struggling to access behavioral health, aging, or medical services.

Maine has prioritized raising awareness among physicians and care providers to improve diagnosis, referrals, and support pathways, Fales said. Framing TBI as a lifelong condition, Fales emphasized the importance of

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² https://www.nashia.org/resources-list/obisss (accessed August 31, 2025).

educating both providers and families, promoting routine screening, and offering direct support through resource lines and community programs. The state’s approach aims to create a culture of recognition and inclusion, where people living with TBI have access to tailored supports and are not left to navigate their care alone. This long-term commitment helps address long-term and evolving medical, social, and behavioral challenges associated with brain injury and reinforces the message that those affected are not alone in their journey, he said.

MOVING FROM FRAGMENTED TO PERSON-CENTERED TBI CARE SOLUTIONS

Shannon Juengst, clinical investigator and senior scientist in the Brain Injury Research Center at TIRR Memorial Hermann and adjunct associate professor at the University of Texas, Houston, described the current TBI care system as “a thousand different islands” representing scattered services and programs. While some effective evidence-based programs exist, many individuals with TBI struggle to reach them, and access often depends on geographic proximity, insurance status, stage of injury, and patients’ ability to identify these resources. The only constant across this system is the person with the brain injury and their family, she said, who are disproportionately responsible for navigating transitions and managing ongoing care needs. Drawing on the metaphor of care transitions as bridges, Juengst argued that building piecemeal bridges between fragmented programs will be insufficient. She argued for the importance of also equipping patients and caregivers with better “boats”—providing the skills, tools, and confidence for effective self-management across systems and services.

Juengst underscored the importance of incorporating environmental and social determinants of health into care design and delivery for TBI. She pointed out that care often fails to account for the contexts in which people live; such contexts shape access and outcomes, including transportation access and local health care infrastructure. Intervention models that overlook these variables are less effective, she said, particularly in underserved communities. To overcome these barriers, Juengst called for a paradigm shift. Rather than expecting people with TBI to find and navigate services on their own, she argued, systems should bring evidence-based interventions into communities in adaptable and accessible ways. Success, she continued, hinges not only on program quality but also on thoughtful community-specific implementation that reduces burden on patients and families.

Central to Juengst’s vision is the importance of both lived experience and scientific evidence. She called for more meaningful inclusion of individuals with TBI in research and program design as cocreators of solutions.

Juengst noted that rebuilding trust between the TBI community and the health care system requires moving beyond persuasion about the importance of services and toward a stance that affirms the inherent value and expertise of those with lived experience. Coproduction of care models, she concluded, is vital for building responsive and sustainable systems that truly reflect the realities of people living with TBI.

DISCUSSION

Recognizing TBI as a Chronic Condition as Part of Systemic Change

Suskauer opened the discussion noting the recent inclusion of TBI on a list of chronic conditions from the Centers for Medicare & Medicaid Services (CMS) and asking how greater recognition of TBI as a chronic condition could improve care. Quinn highlighted how CMS recognizing TBI as a chronic condition enables Medicaid reimbursement for services provided by community health workers (CHWs) to individuals with TBI. Since these services were previously unavailable to the TBI population, North Dakota is now integrating brain injury education into its developing CHW certification process. Fales noted that many primary care providers, therapists, and clinicians still wrongly believe that only recent TBIs have rehabilitation potential. He emphasized that education on the lifelong effects of TBI is crucial to shift these outdated perceptions and ensure continued access to care. Quinn agreed with the importance of educating primary care providers so they can make appropriate referrals to CHWs trained in TBI care navigation. In the veterans community, Scholten described how VA uses ICD-10 codes to annually identify veterans with moderate to severe TBI, enabling targeted outreach to connect individuals with services such as annual TBI assessments regardless of how long ago the injury occurred or where they received initial treatment. He described the strategy as a safety net to capture both newly diagnosed veterans and those navigating long-term symptoms.

Policy, Partnerships, and Capacity

Fales described Maine’s proactive use of Medicaid funding and its Administration for Community Living TBI State Partnership Grant to extend services beyond the acute phase. Because TBI symptoms can reemerge or evolve over time, ongoing rehabilitation access is important. For example, an individual may return to work but experience new cognitive challenges that necessitate reengagement with care. Fales argued that such flexibility along with provider education on TBI’s chronic nature reduces long-term costs and potential misdiagnoses, such as mistaking TBI

for Alzheimer’s disease. Owen Perlman, Associates in Physical Medicine & Rehabilitation, PC, added that most postacute TBI residential rehabilitation programs remain privately operated and are largely unknown to primary care providers. He called for collaboration among hospital systems, emergency departments, and local medical societies to expand provider awareness and build referral capacity.

Ashley pointed to Texas as a model for systemic improvement because legislation mandates that private insurers cover TBI rehabilitation services. This policy shift has allowed the expansion of comprehensive rehabilitation through both private and public funding. Ashley emphasized that earlier access to care leads to faster and more cost-effective recovery, warning that delaying rehabilitation by 3 years triples both cost and time required to achieve similar outcomes. He also noted the inconsistency of Medicaid waiver programs across states, which often leave gaps in service provision. Juengst reinforced the concern that many individuals with chronic TBI symptoms fall off the radar of health care services after initial treatment. Most rely on visits with primary care providers, who frequently lack TBI-specific training, especially in mental health. She advocated for integrating TBI content into medical and graduate curricula as a way to ensure future providers are equipped to address these needs.

Gaps in Pediatric TBI Services and the Role of Schools

Panelists also addressed the lack of systems supporting children and adolescents with TBI. Fales described Maine’s lack of a coordinated return-to-learn policy for children with TBI, despite having a return-to-play statute. Sharing a personal story about his daughter’s concussion, he emphasized the advocacy required by families to secure services through Individualized Education Programs or Section 504 plans.³ Although some school-based services exist, he said, most are not TBI informed and are designed for adults. Ashley observed that schools have effectively become the default medical safety net for children with TBI, yet they rarely provide comprehensive services unless strong advocacy is present. Many parents, especially working ones, face logistical barriers to accessing outpatient therapy for their children. Suskauer added that better communication between educational and health care systems is essential, as the school system’s focus on educational goals may not align with the full scope of TBI-related needs,

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³ Individualized Education Programs (IEPs) and Section 504 plans provide specialized instruction or accommodations to ensure students have access to appropriate education and support services to comply with the Individuals with Disabilities Education Act (34 C.F.R. Part 300) and Section 504 of the Rehabilitation Act of 1973 (34 C.F.R. Part 104).

and there can be significant gaps when students graduate and lose access to structured services and life skills planning.

Integrating TBI Services in Intimate Partner Violence Contexts

The panel concluded with a discussion on TBI in survivors of intimate partner violence (IPV). Quinn explained that during an early screening project, IPV service providers expressed fears that identifying a brain injury could inadvertently cause harm to survivors by raising doubts about their cognitive capabilities or negatively affecting custody decisions. As a result, NDBIN adopted a trauma-informed approach to TBI screening that aims to account for these risks while still providing appropriate support. Fales echoed the need for cross-sector collaboration and community partnerships, describing a collaboration in Maine with behavioral health agencies to conduct TBI screenings among incarcerated women, many of whom were IPV survivors. Both speakers emphasized that education, stigma reduction, and relationship building with IPV service providers are key to safely identifying and supporting survivors with TBI. These efforts reflect a broader need to center community partnerships and lived experience in TBI care.

REFERENCES