Anne Leopold, MSc of JBS International
By now, most people, including medical providers, insurance providers, policymakers, and researchers, know that recovery from traumatic brain injury (TBI) can be a long-term process that begins at the time of the injury. The process can last for many years and usually requires individuals with the TBI to have access to services in their home and community beyond the acute phase of recovery. Post-acute services and supports such as vocational services, cognitive and psychological therapy, assistance with social participation, and help with financial and educational skills are available to help individuals with TBI improve their function after their injury. These services can be delivered in various settings, including residential facilities, outpatient or day treatment programs, home-based programs, and community programs such as clubhouses. However, even though these services are available and have been shown to be effective for addressing individuals’ needs, a great proportion of individuals with TBI report unmet needs one year after their injury or one year after hospitalization (Corrigan et al., 2004; Florida Department of Health, 2009; Heinemann et al., 2002; Pickelsimer et al., 2007) suggesting that individuals’ needs may not be matched effectively with available services and/or that services may not be delivered effectively.
If we are to improve the long-term outcomes and quality of life of individuals with TBI, we need to ask ourselves: Why are individuals not receiving the services and supports they need? What are the barriers to providing and accessing service beyond the acute phase? We, JBS International, including Disability Research Analyst Anne Leopold of the JBS International Disability Services Center have set out to answer these questions by conducting a comprehensive systematic review of peer-reviewed articles and state and agency reports from the past 13 years. Using the framework developed by Ottenbacher and Graham (2007), we identified and monitored barriers according to four domains: financial, structural, personal, and attitudinal.
It is not surprising that financial barriers emerged as the barriers mentioned most often in the literature. Factors such as coverage for services, reimbursement policies, funding streams, and out-of-pocket expenses are some of the greatest barriers individuals with TBI face when trying to obtain services and supports after their injury. There are several reasons for this. First, great variation exists with regard to the types of services that are covered by insurance providers and the duration of coverage; many insurance policies are not sufficient to cover long-term TBI needs. Repetition and stimulation are essential for the brain and body to relearn how to function following neurological injury, but this fact does not seem to have been embraced by many insurance providers, private or public. Rather, recovery may be considered a linear event, and it may be assumed that individuals have recovered when they are discharged from structured settings. In addition, it is important that services be available in the early stages of the recovery. However, long waiting lists and waiting times for waiver services, lasting an average of 25 months for individuals reliant on Medicaid, prevent individuals from receiving services when they would be the most effective. Individuals and families who have financial resources can pay for services out of pocket, but where does that leave the majority of individuals with TBI who have low incomes and few or no resources?
The structure of the post-acute service delivery system—the referral system, discharge planning, training, and education—also creates barriers for individuals with TBI to get the services they need. Services and programs exist to support individuals in their home and community after they leave acute-care settings, but these services are often not linked or coordinated efficiently, resulting in a fragmented service delivery system. In fact, many states have no central point of referral or central authority to coordinate and target appropriate services, and acute-care providers rarely communicate with inpatient and community-based providers. There is also a considerable lack of knowledge about what services are beneficial, what services are available in the community, and how to access these services. Providers, individuals with TBI, and their family members report not having enough knowledge and not receiving enough education about available community services. How can providers coordinate effective discharge planning if they are not aware of the social and psychological consequences of TBI? How can individuals and family members ask for services if they do not know what services are available or where to turn for help?
The post-acute rehabilitation system is complex. Individuals have to navigate insurance policies, transition from structured settings, deal with a variety of providers, keep track of their appointments and medications, while trying to return to normality as much as possible. Navigating these different tasks is difficult for anyone. For an individual who experiences cognitive or behavioral impairments, navigating these tasks successfully seems almost impossible. Memory impairments and poor concentration can compromise individuals’ ability to remember appointments, take medications, or get to locations where services are provided. Mood instability, irritability, and behavioral symptoms can make it difficult to deal with the care system and to build relationships with providers. Many individuals may have a spouse or partner and a supportive social network providing tangible supports and assistance throughout the recovery process, but others may not or may become isolated because they do not feel understood. Findings also show that race, ethnicity, and age may be associated with disparities in access to services. It is unclear whether these disparities are due to attitudes, namely bias or discrimination or whether other factors such as language or location play a role in access to services.
Clearly, many barriers impede access to needed post-acute services for individuals with TBI. This is particularly concerning given that the length of stay in acute inpatient rehabilitation settings has decreased, which places a greater importance on post-acute rehabilitation for the recovery process. To overcome these barriers, efforts are needed from multiple sources, including policymakers, public and private insurance providers, researchers, biopsychosocial providers, caregivers, families, and individuals with TBI. Knowing what barriers individuals with TBI and providers face beyond the acute phase provides a starting point for developing and implementing solutions.
What barriers have you encountered when trying to access services and supports in your community and home for yourself or your family member? What have you done to overcome these barriers?
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Corrigan JD, Whiteneck G, Mellick D. Perceived needs following traumatic brain injury. J Head Trauma Rehabil. 2004;19(3):205-16.
Florida Department of Health. Traumatic brain injury: enhancing the system of care. Florida’s five-year strategic plan [Internet]. Tallahassee (FL): The Department; 2009 Feb [cited 2012 Aug 30] 36 p. Available from: http://wellflorida.org/wp-content/uploads/2012/10/TBIStrategicPlan09.pdf
Heinemann AW, Sokol K, Garvin L, Bode RK. Measuring unmet needs and services among persons with traumatic brain injury. Arch Phys Med Rehabil. 2002;83:1052-9.
Ottenbacher KJ, Graham JE. The state-of-the-science: access to postacute care rehabilitation services, a review. Arc Phys Med Rehabil. 2007;88:1513-21.
Pickelsimer EE, Selassie AW, Sample PL, Heinemann AW, Gu JK, Veldheer LC. Unmet service needs of persons with traumatic brain injury. J Head Trauma Rehabil. 2007;22:1-13.