The quality and coordination of post-acute TBI service systems remains inadequate, although progress has been made in some states. Many people with TBI experience persistent, lifelong disabilities. For these individuals, and their caregivers, finding needed services is, far too often, an overwhelming logistical, financial, and psychological challenge.

• Individuals with TBI-related disabilities, their family members, and caregivers report substantial problems in getting basic services, including housing, vocational services, neurobehavioral services, transportation, and respite for caregivers. Yet efforts to address these issues are stymied by inadequate data systems, insufficient resources, and lack of coordination.

• TBI services are rarely coordinated across programs except in some service sites. Furthermore, in most states, there is no single entry point into TBI systems of care. Access to service systems and financial support is typically driven by nonclinical variables, such as family income, health coverage, geography, and other socioeconomic factors that may change over time.

• Little is known about how persons with persistent TBI-related impairments fare in today’s fragmented and disparate service systems. Persons without health insurance, racial and ethnic minorities, non-English speakers, rural residents, children, and individuals in prolonged coma are especially underserved. Persons with TBI-related neurobehavioral problems, but no obvious physical impairments, face unique obstacles getting needed services.

• Although the collection of health care data is outside the committee’s charge and HRSA’s purview, the committee notes that the establishment of relevant data systems is integral to “impact evaluation” as strictly interpreted and prescribed by the federal Office of Management and Budget.