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Evaluating the HRSA Traumatic Brain Injury Program APPENDIX F Glossary, Abbreviations, and Acronyms GLOSSARY OF TERMS Activities of Daily Living (ADLs): Basic personal activities such as bathing, eating, dressing, mobility, transferring from bed to chair, and using the toilet. Brain Injury Association of America: A nonprofit organization working on behalf of individuals with brain injury and their families. Children’s Health Act of 2000 (P.L. 106-310): A federal law passed by Congress that included several provisions related to children’s health, as well as Title XIII, which reauthorized the grant programs established under the Traumatic Brain Injury Act of 1996 (P.L. 104-166). In addition, the act authorized HRSA to award Protection and Advocacy Grants for TBI to federally mandated protection and advocacy (P&A) systems in the states, territories, and the District of Columbia to bolster their P&A services for individuals with TBI and their families. Core components of a state’s TBI infrastructure: Under the HRSA TBI Program, the four core components of a TBI infrastructure are the following: (1) a statewide TBI advisory board charged with advising and making recommendations on ways to improve coordination of TBI services; (2) a lead state agency for TBI responsible for coordination of state TBI activities; (3) a statewide assessment of TBI needs and resources completed or updated within the last 5 years and including the full spectrum of care and services from initial acute treatment through community reintegration for individuals of all ages having TBI; and
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Evaluating the HRSA Traumatic Brain Injury Program (4) a statewide TBI action plan to provide a culturally competent, comprehensive, community-based system of care that encompasses physical, psychological, educational, vocational, and social aspects of TBI services and addresses the needs of individuals with TBI, as well as family members. Defense and Veterans Brain Injury Center (DVBIC): A partnership of the Department of Defense, the Department of Veterans Affairs health care system, and a civilian partner that includes seven clinical care and surgery sites and conducts clinical research on brain injury. When founded in 1992, it was known as the Defense and Veterans Brain Injury Program. Health Resources and Services Administration (HRSA): A federal agency, within the U.S. Department of Health and Human Resources, that is charged with providing access to health care for the medically underserved. HRSA operates five bureaus including the Maternal and Child Health Bureau, Bureau of Primary Health Care, Bureau of Health Professions, Healthcare Systems Bureau, and HIV/AIDS Bureau, as well as 11 special offices. HRSA’s Maternal and Child Health Bureau administers the HRSA TBI Program. HRSA TBI Program: A federal grant program administered by HRSA’s Maternal and Child Health Bureau. The HRSA TBI Program includes two state-based grant programs intended to improve access to health care and other services for individuals with TBI and their families: (1) the TBI State Grants Program, and (2) the Protection and Advocacy for TBI (PATBI) Program (see below). Implementation Grants: One of three types of state grants that have been awarded to states, territories, and the District of Columbia under the HRSA TBI State Grants Program. Implementation Grants funded various TBI program implementation activities, including the implementation of a state’s TBI action plan, programs to address identified needs of TBI survivors and their families, and initiatives to improve access to services for TBI survivors and their families. Medicaid head and spinal cord (HASC) injury waiver: A type of Medicaid home and community-based services waiver to provide services to individuals with TBI, spinal cord injury, or a similar disability. Medicaid home and community-based services (HCBS) waiver: A Medicaid waiver that allows a state to waive Medicaid provisions in order to allow long-term care services to be delivered in community settings; it is the Medicaid alternative to providing comprehensive long-term services in institutional settings. This allows a state to provide additional services to Medicaid beneficiaries with TBI (e.g., case management, respite care, life-skills training) through a waiver program.
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Evaluating the HRSA Traumatic Brain Injury Program Medicaid mental retardation and developmental disabilities waiver: A Medicaid waiver that is part of the Medicaid home and community-based waiver program; this waiver allows a state to waive Medicaid provisions in order to provide services to individuals with developmental disabilities, including TBI, incurred before the age of 22. National Association of State Head Injury Administrators (NASHIA): The national membership association for state TBI program officials and other individuals concerned with state and federal brain injury policy. National Disability Rights Network (NDRN): A voluntary national membership association of protection and advocacy systems and client assistance programs. NDRN is formally known as the National Association of Protection and Advocacy Systems (NAPAS). Olmstead decision: On June 22, 1999, the U.S. Supreme Court held in Olmstead v. L.C. that the unnecessary segregation of individuals with disabilities in institutions may constitute discrimination based on disability. The court ruled that the Americans with Disabilities Act may require states to provide community-based services rather than institutional placements for individuals with disabilities. Many states now implement Olmstead plans, which provide community-based services for individuals with disabilities in accordance with the Olmstead ruling. P&A system: Under the Developmental Disabilities Assistance and Bill of Rights Act (42 U.S.C. 6012), each state seeking a federal grant for P&A services for individuals with developmental disabilities must establish a P&A system independent of service-providing agencies to empower, protect, and advocate on behalf of persons with developmental disabilities. PATBI Grant Program: A grant program authorized by the Children’s Health Act of 2000 that is one of two grant programs that make up the HRSA TBI Program (see above). Under this program, HRSA awards PATBI Grants to federally mandated P&A systems in states, territories, and the District of Columbia to bolster their P&A services for people with TBI and their families. Planning Grants: One of three types of grants that have been awarded to states, territories, and the District of Columbia under the TBI State Grants Program. Planning Grants were used to establish the four core components of a TBI system infrastructure—namely, a statewide TBI advisory board, a lead state agency for TBI, a needs/resources assessment, and a statewide TBI action plan. Post-Demonstration Grants: One of three types of grants that have been awarded to states, territories, and the District of Columbia under the TBI State Grants Program. Post-Demonstration Grants were awarded to help states or other entities that have satisfactorily completed an
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Evaluating the HRSA Traumatic Brain Injury Program Implementation Grant further their efforts to build TBI service capacity. Supported employment: The provision of ongoing support from an external source (e.g., a community rehabilitation provider or state agency) to an individual in a paid, community-based employment setting where the majority of workers do not have disabilities. TBI Model Systems: A research initiative, administered by the National Institute on Disability and Rehabilitation Research (NIDDR), with the objective of studying the course of brain injury recovery and outcomes following the delivery of a coordinated system of emergency care, acute neurotrauma management, comprehensive inpatient rehabilitation, and long-term interdisciplinary followup services. The 16 TBI Model Systems of Care sites throughout the country are Birmingham (Alabama), San Jose (California), Englewood (Colorado), Boston, Detroit, Rochester (Minnesota), Jackson (Mississippi), Edison (New Jersey), New York City, Charlotte, Columbus, Philadelphia, Pittsburgh, Dallas, Richmond, and Seattle. TBI State Grants Program: A program authorized by the Federal Traumatic Brain Injury Act of 1996, and later reauthorized in the Children’s Health Act of 2000, that is one of two programs in the HRSA TBI Program (see above). Under this program, HRSA awards grants to states, territories, and the District of Columbia to help them improve their TBI infrastructure and state-level capacity for meeting the post-acute needs of persons with TBI. TBI State Program Grants: Federal grants awarded by HRSA under the TBI State Grants Program (see TBI State Grants Program). TBI Trust Funds: Funds that are established in a state from fines or other fees imposed from a variety of sources that provide a funding stream for services and supports for individuals with TBI. Traumatic brain injury (TBI): A brain injury caused by a sudden jolt, blow, or penetrating head trauma that disrupts the function of the brain. The effects of TBI vary from person to person, depending on the force dynamics of injury and the patient’s anatomy and physiology. When TBI occurs, the brain may be injured in a specific location or the injury may be diffuse and located in many different parts of the brain. The effects of TBI may be temporary or permanent and include a broad range of physical, cognitive, and behavioral impairments that result from externally inflicted trauma to the brain. Traumatic Brain Injury Act of 1996 (P.L. 104-166): A 1996 federal law that directed three agencies of the U.S. Department of Health and Human Services—HRSA, the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health (NIH)—to implement several first-time programs related to TBI. HRSA was mandated to imple-
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Evaluating the HRSA Traumatic Brain Injury Program ment a grants program to foster state-based TBI infrastructure and service systems for meeting the post-acute needs of individuals with TBI and their families. CDC was directed to address prevention of TBI through surveillance, research on prevention, and public information and education programs. NIH was charged with conducting a consensus conference; expanding participation of academic centers of excellence in TBI treatment and rehabilitation research and training; and conducting research on diagnosis, prognosis, and treatment from acute care through rehabilitation. ACRONYMS AND ABBREVIATIONS ADA Americans with Disabilities Act ADL Activities of Daily Living BIAA Brain Injury Association of America CDC Centers for Disease Control and Prevention CMS Centers for Medicare & Medicaid Services DHHS Department of Health and Human Services DVBIC Defense and Veterans Brain Injury Center FY fiscal year HRSA Health Resources and Services Administration IOM Institute of Medicine MCHB Maternal and Child Health Bureau NAPAS National Association of Protection and Advocacy Systems NASHIA National Association of State Head Injury Administrators NIDRR National Institute on Disability and Rehabilitation Research NIH National Institutes of Health OMB Office of Management and Budget OSEP Office of Special Education Programs OSERS Office of Special Education and Rehabilitation Services P&A protection and advocacy PART Program Assessment Rating Tool PATBI Protection and Advocacy for TBI RSA Rehabilitation Services Administration SSA Social Security Administration SSDI Social Security Disability Insurance TBI TAC Traumatic Brian Injury Technical Assistance Center TBI traumatic brain injury TBICS Traumatic Brain Injury Collaborative Space VR Vocational rehabilitation