Traumatic brain injury is damage to the brain following externally-inflicted trauma, producing temporary or permanent impairments in an individual’s physical, cognitive and/or psychosocial functioning. Although many people eventually recover or improve in functioning, some who survive will have multiple, life-long neurological disabilities that may range in severity from moderate to very severe. They may require services and supports for an extended period of time, some for the remainder of their lives.
While length of unconsciousness is a significant predictor of severity, other factors also influence degree of disability and functional status of people after traumatic brain injury. These include such things as age at injury, conditions and functioning before the injury, specific type of injury and area(s) of the brain involved, other bodily injuries occurring from the same event, type and length of acute medical treatment provided, and the kinds and amount of medical / neuropsychological rehabilitative services received. The family and social support network available to the person and financial resources are also critical variables.
The emotional and financial impact of serious traumatic brain injury can be devastating for both survivors and their families. Most caregiving responsibilities fall to a spouse, parents or other family members. Besides impairments in physical abilities, memory and thinking, what often is the most difficult for individuals and families is dealing with changes in personality and problems with behavior that may result after TBI. Psychological and financial stress can be overwhelming as personal and family resources are exhausted and little or no help is available from state and local resources.
People with traumatic brain injury have diverse and changing needs for a variety of services and supports. This makes it difficult for them to access existing services systems. Publicly funded state delivery systems typically are focused on diagnosis (e.g., mental retardation) or based on financial status (e.g., Medicaid). Few states have designated responsibility for the TBI population to a single agency. This is because federal funding streams have shaped state services, making it hard to restructure or expand them for new populations.
Services for people with brain injury are spread over many agencies such as health, social services, mental health, and vocational rehabilitation. In addition, in every state there is strong competition among many disability constituencies and others with special needs for funding and resources. In South Carolina, the Department of Education, Disabilities and Special Needs, Health and Human Services, Mental Health, and Vocational Rehabilitation are the primary public service providers for people with TBI in the state. Limited current service capacity was documented among these organizations, and local support groups are loosely organized and lack resources to provide direct supports and more effectively represent the TBI constituency.
The federal Traumatic Brain Injury Act of 1996 mandated that each state establish an advisory board within the appropriate department of the state. Advisory boards established under the TBI Act “shall advise and make recommendations to the state on ways to improve services coordination regarding traumatic brain injury. Such advisory boards shall encourage citizen participation through the establishment of public hearings and other types of community outreach programs. In developing recommendations under this paragraph, such boards shall consult with federal, state, and local governmental agencies and with citizens groups and other private entities.”
Through efforts supported by two grants from HRSA, the South Carolina TBI State Advisory Committee was organized. As it grew and continued to thrive, it was renamed the South Carolina Brain Injury Leadership Council (SCBILC) to reflect an emphasis on leadership development for building a stronger and more effective system of care for persons with brain injury and their families in the state.