Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop (2023)

Chapter: 4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury

Previous Chapter: 3 Elements of a System of Follow-Up Care for Mild TBI
Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

4

Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

The fourth session of the workshop featured examples of programs designed to address care needs following traumatic brain injury (TBI), including social, emotional, and structural factors that influence recovery. John Corrigan, emeritus professor, Department of Physical Medicine and Rehabilitation and director, Ohio Valley Center for Brain Injury Prevention and Rehabilitation, The Ohio State University (OSU), opened the session and highlighted that the 2022 Traumatic Brain Injury: A Roadmap for Accelerating Progress report stated that fully addressing TBI requires a framework that extends beyond a medical model of injury to include personal, social, and environmental factors that affect recovery (NASEM, 2022). The report included recommendations that health care systems connect with (1) partners outside of health care, (2) expertise in domains that contribute to health equity, and (3) community members and institutions with which patients interact. Moreover, the report recommended that equity should be institutionalized in the infrastructure of organizations and in their community partnerships.

ADDRESSING SOCIAL DETERMINANTS OF HEALTH THAT AFFECT TBI RECOVERY

Monique Pappadis, associate professor in the Department of Population Health and Health Disparities, University of Texas Medical Branch, discussed the effects of social determinants of health on TBI recovery at the individual, family, community, and societal levels. Social determinants of health exist in five major domains: economic stability, education, health care access and quality, neighborhood and built environment, and social and community context. Health disparities are preventable historical or current differences in burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations. Many TBI patients experience these disparities, she said. A research framework developed by the National Institute on Minority Health and Health Disparities examines how domains of influence—biological, behavioral, physical/built environment, sociocultural, and health care system—operate at the individual, interpersonal, community, and societal levels (NIMHD, 2017). Facilitators of, and barriers to, health within each domain can change over time.

Pappadis outlined numerous social factors that can affect TBI recovery at the individual level. Race and ethnicity are social constructs with effects ranging from personal interactions to the structure of systems—influencing who has access to health care—and have been shown to result in health disparities (Lequerica et al., 2023). Education and socioeconomic status also affect recovery patterns. For example, food insecurity creates barriers to adequate nutrition for good health that can negatively affect well-being after a TBI (Driver et al., 2019). Lack of transportation affects an indi-

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

vidual’s ability to follow a recommended care plan. Pappadis noted that many of the patients with whom she has communicated had missed followup appointments because of transportation challenges. In working with Spanish-speaking persons with TBI, she has found limited English language proficiency to be a major barrier to accessing care and achieving full recovery (Pappadis et al., 2022).

Many health care settings do not provide care in a culturally competent manner and lack appropriate translation services and information accessible to all individuals (Arango-Lasprilla, 2012). Health literacy plays a role in outcomes, warranting efforts to both increase health literacy and improve the information provided to patients as well as their access to appropriate health care. To address individual-level social determinants of health that influence TBI treatment and recovery, she suggested developing culturally relevant interventions, addressing discrimination, providing supports and resources to improve health and well-being, and using technology to better monitor patient health.

Families play a large role in TBI recovery, and supporting the family unit can bolster treatment plans, said Pappadis. Interpersonal social determinants of health that influence TBI recovery include the caregiving burden, family dysfunction, decreased social networks, education and employment of family members, interpersonal discrimination, access to health providers, and patient–provider interactions (Baker et al., 2017; Gordon et al., 2015; Sodders et al., 2020; Trexler et al., 2016). Family supports to enhance recovery can include direct services to family members, resource facilitation at the institution and state levels, and interventions to improve and implement culturally humble practices. Pappadis remarked that in her work connecting TBI survivors with needed services, she has found that many institutions have not developed sufficient community partnerships and therefore lack the capacity to make appropriate referrals to address patient needs related to social determinants of health.

Pappadis emphasized that community factors such as environment, community, neighborhood, crime, poverty, and safe and stable housing can affect a TBI patient’s ability to adhere to a treatment plan (Budnick et al., 2017; Moore et al., 2016; Pappadis et al., 2012; Sander et al., 2011). Strategies to address community-level social determinants of health include service coordination and establishing partnerships with community agencies, connecting TBI patients and their families to needed services, advocating for housing programs and policies to improve safety, and creating community-based intervention programs.

At the societal level, social determinants of health include laws and policies that influence the behaviors of patients, families, providers, organizations, payers, and governments. For example, most states have Medicaid Home and Community-Based Services waivers in place to provide care and

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

services to persons with disabilities and older adults, but only about half of these waivers include TBI-specific services. Changes at the policy level could increase institutional capacity to provide appropriate care, which in turn could enable providers to improve the care they offer, leading to improved outcomes after TBI.

FUNDAMENTALS OF TRAUMA-INFORMED CARE FOR VULNERABLE POPULATIONS

Julianna Nemeth, assistant professor of Health Behavior and Health Promotion, Ohio State University College of Public Health, discussed the fundamentals of trauma-informed care for vulnerable populations. As a scientist focused on health equity interventions, she conducts community-based participatory action research to help survivors of interpersonal violence with chronic brain injuries change health risk behaviors and access safety, health, and social services. Her early-career direct advocacy work in domestic violence and sexual assault programs took place in settings including courtrooms and emergency departments. Upon recognizing a need for changes in the interpersonal violence evidence base, she moved to academia to conduct research with violence survivors.

Violence is a social and structural determinant of health, Nemeth emphasized, and trauma from interpersonal violence is pervasive. For instance, one in three women will experience severe violence from an intimate partner in her lifetime; the rate for men is only slightly lower at one in four. Populations with lower levels of access to social and structural resources supporting health are simultaneously at increased risk of experiencing violence, including TBI. The Substance Abuse and Mental Health Services Administration defines individual trauma as “an event or circumstance resulting in physical, emotional, and/or life-threatening harm that has lasting adverse effects on the individual’s mental, physical, emotional, social, and/or spiritual well-being” (SAMHSA, 2022). Providers of advocacy services for survivors of violence understand that current traumatic events occur within a larger context that includes historical and intergenerational trauma and social determinants of health.

Because trauma-informed care is standard practice for working with survivors of violence, agencies that focus on this population have adopted trauma-informed practice frameworks, Nemeth explained. These frameworks use a flexible approach to service delivery that centers on the needs of the client. Adopting this approach can require changing organizational practices, policies, and procedures (SAMHSA, 2014). Trauma-informed practice entails efforts to avoid retraumatizing survivors by acknowledging the widespread effect of trauma on individuals’ lives, recognizing signs and symptoms of trauma, and responding with sensitive services that integrate

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

trauma knowledge into practice. Many survivors of violence engage in high-risk behavior and struggle to access and find success with health and safety services. Noting a link between domestic violence, sexual violence, childhood abuse, community violence, and suicide, she underscored that high-risk behaviors can be life threatening.

TBI and Interpersonal Violence

Nemeth remarked that brain injury considerations are infrequently applied to interventions for survivors of domestic violence, despite the higher risk of TBI among this population. To address this need, OSU uses a federally funded, public health planning process to help domestic violence agencies improve service access for survivors facing mental health and/or TBI challenges. Nemeth and colleagues used data from a needs assessment—conducted with 46 survivors of domestic violence receiving services at five programs across Ohio—to inform intervention design. The assessment revealed that 72 percent of survivors accessing services had experienced blunt force head trauma—half of whom had been struck in the head more times than they could accurately count—and 80 percent had experienced strangulation with subsequent alteration in consciousness. The head and neck are the most common target sites for domestic violence; 44 percent of participants reported that their first experiences of violence toward their head or neck included concurrent blunt force head trauma and strangulation. The assessment also inventoried the current physical, emotional, and cognitive symptoms that the survivors of domestic violence were experiencing, including seizures (15 percent of participants), anger or rage (61 percent), memory issues (72 percent), drug or alcohol concerns (13 percent), and thoughts of suicide (11 percent).

Approaches to Care Informed by Trauma and TBI

Despite the high rate of head trauma and associated symptoms among survivors of domestic violence, advocates and survivors who participated in the research were largely unaware that repeated head trauma and strangulation could result in brain injury, reported Nemeth. She recounted a survivor, who tried to end her life 10 years after experiencing strangulation and TBI, who said, “If the right person had the right knowledge, this all could have been avoided.” In response to such insights, OSU and the Ohio Domestic Violence Network created a trauma- and brain-injury informed framework—the CARE approach—that considers social and structural determinants of care that affect the daily lives of violence survivors (see Box 4-1).1

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1 More information about the CARE program and Ohio Domestic Violence Network is available at https://www.odvn.org/brain-injury (accessed June 29, 2023).

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

The approach focuses on accommodations and accessibility and is integrated into a package of service provider tools.

As a component of the CARE approach, connecting refers to service providers connecting with patients to extend their understanding beyond injury and abuse to a survivor’s personal priorities and motivations, learning what matters and is meaningful to each individual. For example, a TBI patient experiencing domestic violence may have needs that supersede follow-up care appointments. Therefore, meeting both the immediate and longer-term needs of survivors can facilitate recovery. Nemeth reported that many survivors of violence have had negative past experiences while receiving health care; connection can provide reassurance, consistency, and a context for trust.

The second step of the CARE approach is acknowledging the effects of both trauma and TBI, said Nemeth. Acknowledgment in advocacy practice involves understanding that (1) head trauma and mental health challenges are common in survivors of violence, and that (2) brain injury and social determinants of health affect service engagement. In health care, acknowledgment refers to recognizing that domestic violence, trauma, and social determinants of health will affect follow-up care after TBI. Numerous short- and long-term consequences of experiencing violence and head trauma—including substance use, suicidal ideation, and executive dysfunction—are recognized as common among survivors of violence. Executive dysfunction can affect survivors’ ability to access safety and basic services and to fully engage in both daily activities and in life-saving processes. Many survivors do not attend follow-up care

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

appointments, criminal justice proceedings, or counseling sessions despite the high stakes that may be involved (for example, maintaining custody of their children). She suggested that rather than framing a survivor’s lack of follow-through as unwillingness, executive dysfunction may be the cause. Reframing why a survivor “will not” engage in follow-up care to asking why she “cannot” can enhance problem solving in both advocacy and health care, she added.

Responding to survivor needs is the third step of the CARE approach. Providers should offer accommodations and effective, accessible referrals for an individual’s needs related to TBI, strangulation, and mental health challenges. Offering support tailored to a person’s unique needs creates opportunities to address potential barriers to success. Nemeth explained that the final step in the CARE approach is to evaluate whether the accommodations and supports have been effective in meeting a survivor’s needs, then determining whether changes are needed to increase effectiveness.

To facilitate the integration of connection, acknowledgment, response, and evaluation into practice, the Ohio Domestic Violence Network and OSU developed CARE tools distributed to agencies working with survivors of violence, as well as offering brief trainings on brain injury and mental health issues to enable advocates to discuss these topics with survivors of violence in nonmedical ways. During the first year of implementation, agencies used the CARE tools in courtrooms, shelters, and counseling centers, said Nemeth. An assessment indicated that use of the CARE tools strengthened trauma-informed practices agency-wide to address head trauma, strangulation, mental health, substance use, and suicide (Nemeth et al., 2023). Additionally, implementation of the CARE framework facilitated survivor empowerment and increased the sense of support that staff felt in providing trauma-informed care. Staff reported feeling empowered to better address brain injury after being equipped with the language and tools included in CARE (Kemble et al., 2022). Staff members using CARE tools are also more likely to reframe survivor behavior as “cannot” rather than “will not,” she said, and thus are more likely to provide survivors with accommodations, structural and functional supports, and self-help efforts.

Community-Based, Trauma-Informed Systems of Care

Increasing survivor engagement in follow-up care can be a challenge for advocates working in medically disconnected, community-based organizations, remarked Nemeth. The high rates of brain injury among survivors of violence warrant efforts to better connect systems of TBI response and treatment to community-based organizations working with this population. To that end, OSU is soliciting community input from safety, justice, and social service organizations serving survivors of violence to translate research on

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

violence-based chronic brain injury into services for survivors. Thus far, OSU has hosted two large gatherings of community-based organizations and survivors of violence to cocreate models and practice processes with communities.

DESIGNING AND ACCESSING APPROPRIATE COMMUNITY SERVICES

Rebeccah Wolfkiel, executive director, National Association of State Head Injury Administrators (NASHIA), explained that her organization is a national nonprofit trade association that assists state governments in creating systems of care to support people living with brain injuries. NASHIA contributes technical assistance, training, networking, and advocacy to state efforts to build TBI service capacity. Most states have a state-level program dedicated to this issue; however, the programs’ services, policies, and location within government vary—for example, they can be housed in vocational rehabilitation (VR) agencies, aging and independent living services, behavioral health services, public health, human services, or state universities. The department in which a state brain injury program is located influences its priorities and the services it offers.

States use a variety of resources and funding sources to build programming and systems of care for TBI, said Wolfkiel. Among federal programs accessible to state governments, the Administration for Community Living (ACL) delivers a state grant program for TBI that awards competitive grants to approximately 30 states.2 These infrastructure-building grants fund state-level positions focused on creating systems of care for brain injury and partnerships with other relevant agencies. Many states also dedicate budget line items to TBI systems of care, she added.

Neurological Resource Facilitation

Wolfkiel emphasized that resource facilitation, care coordination, and resource navigation services help people with TBI access available community resources, such as vocational rehabilitation, housing, and transportation support, and contribute to improved long-term outcomes. Most state programs feature a resource navigator who conducts a needs assessment to make a holistic determination and prioritize areas of need, then identifies the top three community service needs that are most likely to help an individual return as close to their baseline as possible. Length of services differs between states—ranging from months to years or even indefinitely, in some

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2 For information on the ACL’s State Partnership Grant Program, see https://acl.gov/programs/post-injury-support/traumatic-brain-injury-tbi (accessed July 27, 2023).

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

states—and outreach frequency is typically biweekly or monthly. Alabama, Colorado, Iowa, and Minnesota have mature neurological resource facilitation programs that have been in operation for over three decades, she noted.

In 2000, the U.S. Department of Health and Human Services funded the Brain Injury Association of America (BIAA) to create a best practices guide on resource facilitation for individuals with brain injury (Connors et al., 2001).3 State facilitation approaches vary widely, she noted, but are often flexible and person centered. Some states use a regional approach in lieu of a statewide program to contend with a lack of resources. Programs that provide a limited range of agency-specific services typically direct patients with additional needs to state-level affiliates of BIAA or the United States Brain Injury Alliance. She noted that active referrals—in which the medical discharge planner contacts an advocacy organization on behalf of the patient—are more beneficial than simply providing patients with the organization’s contact information.

The services TBI survivors most frequently seek out via resource facilitators are support groups and physical, occupational, and/or speech therapy; other common needs include in-home care, assistive technology, housing support, and a host of other services designed to assist individuals in returning to school or work. Because of the variability of programs across states, NASHIA and the Moody Foundation have partnered to conduct a Delphi-based consensus process, bringing together a group of national experts in the field to determine the common components that provide the most benefit for people using resource facilitation programs.4 Taking place in 2023, the process will also explore outcome measures and work toward establishing a gold-standard model that states can replicate. Wolfkiel highlighted growing research on the efficacy of neuro-resource facilitation, particularly in vocational and return-to-school settings (Davis et al., 2018; Seymour et al., 2008; Trexler and Parrott, 2022; Trexler et al., 2016).

ALABAMA TBI SYSTEM OF CARE

April Turner, director of Traumatic Brain Injury Programs within the Alabama Department of Rehabilitation Services, provided an overview of

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3 This manual outlines elements including assessment, planning, identification, negotiation in prioritizing services, monitoring, reassessment, outreach, education and training, and emotional support and advocacy. Best practices are guided by the principles that facilitation is individualized, accessible, holistic, effective and valued, participant-driven, flexible, and builds community partnerships.

4 The Delphi technique is a systematic, consensus-development method of forecasting using the opinions of a panel of experts.

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

the Alabama system of care for TBI,5 which serves individuals with head injuries ranging from concussion to severe brain injury. The system is partially funded by federal grants and features resource navigation services, an advisory council, a task force, a trust fund board, and a head and spinal cord injury registry. This newly created statewide navigation system receives referrals from hospitals, the state trauma registry, medical providers, advocacy organizations, community agencies, website inquiries, and state departments including mental health, senior services, veteran affairs, and vocational rehabilitation. Navigators funded by federal TBI grants staff a toll-free helpline and respond to referrals with a range of resources and services offered to individuals at no cost. These include education and training, online screening, resource facilitation, referral, and case and pediatric/adult care coordination among a variety of public and private community providers, such as cognitive remediation, neuropsychological testing, therapeutics, socialization, suicide prevention, and behavioral health services. In partnership with NASHIA, Alabama has also conducted statewide needs assessments, a state TBI plan, increased advocacy, and public awareness of TBI.

The Pediatric and Adult TBI Care Coordination program uses master’s-level social workers and rehabilitation counselors to provide in-home services within 2 years postinjury, Turner noted. Care coordinators connect individuals with service providers and resources (e.g., referrals, support groups, telehealth, vocational rehabilitation services) to help them achieve their specific goals, with the overall aim of reintegrating individuals in school, employment, and community settings. In 2022, the Alabama TBI system of care received 6,874 referrals for TBI and spinal cord injury from Alabama hospitals including all Level 1 trauma centers. Turner noted that of those referrals, 526 individuals received resource facilitation and referral services, 383 children entered the Pediatric Care Coordination program, 378 people received support from an adult care coordinator, and 211 individuals engaged in information, education, and training offerings. Alabama’s TBI resource facilitation and care coordination programs have been in place for years, and Turner noted that they have continued to improve program models by creating a TBI navigation and helpline system to increase access to community services for individuals with head injuries, their families, and care providers.

DISCUSSION

Corrigan moderated the discussion. He began by asking panelists how soon after a brain injury should professionals address needs related to

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5 More information about Alabama TBI services is available at https://www.alabamatbi.org and https://rehab.alabama.gov/services/vr/tbi (accessed July 8, 2023).

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

social determinants of health, domestic violence, trauma, and community services? Subsequent topics arose in response to comments and questions from participants.

Time-Sensitive Social Determinants of Health Support

In response to Corrigan’s opening question, Turner emphasized that promptly addressing these issues facilitates easier care transitions and supports recovery. Therefore, the Alabama model aims to attend to these issues within the first 2 years postinjury, although services can extend beyond that time frame. Referrals enter the trauma registry via hospitals, local doctors, and Level 1 trauma centers, and the program uses established relationships with hospitals to ensure that hospitals’ floors and discharge areas make referrals. Care coordinators guide services and remind patients of followup appointments. Wolfkiel added that some models feature a hospital employee responsible for making active referrals to community resources, thereby shortening the timeline between discharge and service engagement. Nemeth stated that these issues should be addressed as quickly as possible for all patients because they can be critically important for survivors of violence. Safety is paramount for survivors of intimate partner violence, human trafficking, or sexual assault. Furthermore, survivors of violence are often isolated from support networks. Therefore, immediate efforts to address social determinants of health and any barriers to accessing both health and safety services are essential for this population. Pappadis concurred that social determinants of health should be addressed early and support needs should be reassessed regularly, as numerous factors influence recovery and circumstances can change over time.

Care Coordination Funding and Caseloads

A participant remarked that care coordinators and patient navigators contribute their expertise in social issues, regulations, and laws when providing input to clinicians. She asked how best to advocate for the types of successful, well-used programs presented in this session, noting that such programs often do not receive adequate funding despite the social benefit their services provide. Wolfkiel responded that NASHIA advocates for funding for these programs and that some states use federal funds, including ACL. TBI grants, for this purpose. She added that additional cost/benefit research is needed, as data indicating the long-term benefits associated with these programs would strengthen requests for increased federal funding.

In response to a question about the average caseloads of navigators, Wolfkiel stated that navigators in most states serve 50–65 patients, with some states reaching navigator caseloads as high as 175 individuals. Turner

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

noted that the Alabama program stretches an operating budget of approximately $1 million across care coordination services, advocacy, and independent living. Care coordination positions in Alabama are funded via fines imposed for driving under the influence, she said. These monies fund four care coordinators for the entire state, creating coordinator regions so large as to necessitate 3-hour drives to meet with clients in their homes. The governor has included line-item funding in the state budget that will add two additional care coordinators and reduce caseloads to approximately 40 clients per coordinator, she said. Turner added that Alabama used TBI grant funding from the ACL to develop its resource model in which navigators handle resource facilitation calls, thus relieving care coordinators of this responsibility and enabling them to dedicate more time to home visits.

Incorporating Social Determinants of Health into Guidelines

Mark Bayley, professor in the Division of Physical Medicine and Rehabilitation, University of Toronto, asked about embedding social determinants of health considerations into practice guidelines. Pappadis suggested applying the lens of vulnerable populations to the process of developing clinical care guidelines for TBI to identify whether specific recommendations would have limited accessibility or applicability for certain subgroups. Gathering input from TBI survivors from vulnerable populations is the best way to incorporate their needs into guidelines, she added. Nemeth stated that guidelines should explicitly name vulnerable and special subpopulations, and that experts working with these subpopulations should be engaged in the guideline development process. Bringing together expertise from different areas can create guidelines that better meet the needs of TBI survivors. Turner noted that most states have advisory councils, and that these can serve as a mechanism for soliciting guidance and input from individuals with lived experience with TBI.

Program Attrition

Regarding client attrition, Turner noted that a service gap can occur between referral and the initial care coordinator home visit. However, once the care coordinator establishes service with an individual, very few clients in the Alabama system disengage from services before they have achieved their goals. She attributed this to the warmth and focus on relationships with which care coordinators approach service provision, adding that many clients continue to stay in touch with their coordinators for years or even decades after services have ended. Corrigan remarked that in-person services such as those provided by Alabama’s system of care tend to experience lower levels of dropout, whereas services provided through telephone- or

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

remote-based models are more likely to be periodic in nature with larger service gaps. Such trade-offs will need to be considered when designing systems of TBI follow-up care and services.

TBI and Elder Abuse

In response to a question about whether TBI research has been conducted with older survivors of abuse, such as people living in nursing facilities, Nemeth emphasized that violence typically targets vulnerable populations. Older adults, children, survivors of natural disasters, immigrants and refugees, people with disabilities, and individuals dependent on others for care are more vulnerable to experiencing violence than the general population. She remarked that more research and efforts to engage vulnerable populations in community services are needed to ensure that those at greatest risk for acquired TBIs are receiving services and resources. Pappadis commented that the University of Texas has received funding to explore the intersection of elder mistreatment and TBI; she is currently researching how best to improve screening and service referrals to ensure that older adults are in safe environments.

Fostering Community Partnerships

Corrigan asked about the readiness of community agencies to partner with health care systems. Wolfkiel replied that community agencies frequently operate via collaboration and partnerships, and are therefore primed to contribute to such endeavors. Turner commented that the Alabama patient navigation system has expanded twofold over its lifetime, demonstrating both the need for these services and the community’s willingness to help meet the need. She noted that Alabama’s TBI system of care has also partnered with federal and state departments of veterans affairs to ensure that veterans with TBIs are linked to care. She reflected that additional funding for TBI services could enable further program expansion to serve a greater number of TBI survivors.

Nemeth commented that community organizations are typically open to partnerships but may not have the workforce capacity to take on additional initiatives. The COVID-19 pandemic led to an increase in domestic violence and head trauma, taxing the capacity of programs with limited budgets. Innovative methods of partnership, outreach across states, and enhanced funding for health services for survivors of violence can increase engagement with potential community partners. Noting that community partners often have inadequate resources to meet the needs they are working to address, Pappadis acknowledged the potential challenge that new partnerships can generate additional clients needing services. However,

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.

developing partnerships among multiple community organizations addressing similar needs can also help to distribute the additional client load across groups, she said.

A participant agreed that creative problem solving can enable collaborative relationships within underresourced systems. For example, she worked at a county hospital in Tennessee that contributed to a community partnership by providing a free office space to a care coordinator and obtaining permission from the state to share patient information with her. This coordinator sent letters to hospitalized patients so they had immediate access on their return home to information about housing, rehabilitation, Medicare and Medicaid, and support groups. Corrigan added that the resource facilitation program in Ohio contracts an Ohio Domestic Violence Network employee to enable ongoing collaboration for referred individuals who have needs related to TBI and violence. Turner shared that coordination across state systems can also be useful to address services for TBI patients. For instance, the neighboring states of Alabama and Tennessee collaborated to address needs in which patients from a Tennessee-based hospital near the border have been referred to the Alabama TBI system of care.

Wolfkiel remarked that community services agencies often receive less public and policy attention than medical and research communities, despite the important roles they play, and that providers and researchers should recognize and advocate for TBI-relevant community services. Nemeth highlighted that funding via the Violence Against Women Act primarily supports criminal justice responses to violence versus health justice responses.6 Notwithstanding the higher rates at which survivors of violence use emergency health services, health has not been a focus of federal funding for this population. She added that some survivors of violence are also members of populations that experience higher rates of incarceration and police encounters; therefore, they may be reluctant to participate in responses focused largely on criminal justice but may be more inclined to engage in services to meet health needs. Health justice work would also benefit from further advocacy and funding, she suggested.

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6 Violence Against Women Act of 1994, Public Law 103-322, 103rd Cong., 2d sess. (September 13, 1994).

Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
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Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
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Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
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Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
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Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
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Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
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Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
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Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
Page 50
Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
Page 51
Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
Page 52
Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
Page 53
Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
Page 54
Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
Page 55
Suggested Citation: "4 Achieving Effective Follow-Up Care Systems During the Initial Year Postinjury." National Academies of Sciences, Engineering, and Medicine. 2023. Improving Systems of Follow-Up Care for Traumatic Brain Injury: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27205.
Page 56
Next Chapter: 5 Improving Systems of Follow-Up Care: Perspectives on the Roles of Certification, Reimbursement, and Information Management Systems
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