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Evaluating the HRSA Traumatic Brain Injury Program APPENDIX D Profiles of TBI Initiatives in Seven States As noted in Appendix A, the Institute of Medicine (IOM) Committee on Traumatic Brain Injury agreed to take an in-depth look at traumatic brain injury (TBI) initiatives in seven states that would illustrate major successes and failures, as well as common themes, related to Federal TBI Program Grants. TBI initiatives in Alabama, California, Colorado, Georgia, New Jersey, Ohio, and Washington State are profiled in some detail below.1 The information presented here was obtained during the summer of 2005 via telephone or in-person stakeholder interviews with one or more representatives of various state organizations using the semi-structured interview guide presented in Appendix B.2 ALABAMA STATE TBI PROFILE Background Alabama has had a special focus on brain and spinal cord injury since 1979, after the shooting of former Governor George Wallace heightened 1 These states were thought to be representative of the considerable state-to-state differences in their preparedness for applying for TBI Program Grants. The criteria used to select the seven states are identified in Table A-1 of Appendix A. 2 Additional information on the interviews and findings in the seven states is presented in the consultant’s report in Appendix E.
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Evaluating the HRSA Traumatic Brain Injury Program public awareness of such injuries. The Alabama State Head Injury Program was created in 1981 to provide vocational and rehabilitation services for individuals with TBI. In 1989, the Alabama Department of Rehabilitation Services established the Alabama Head Injury Task Force and designated a statewide coordinator. A TBI work team made up of individuals with a TBI, family members, rehabilitation professionals, and medical and social services providers was also established to develop a service delivery model to address problems with traditional vocational rehabilitation services for people with brain injury. This group developed the Interactive Community-Based Model (ICBM) to decentralize and provide community integration services for people with TBI in local communities. The ICBM was piloted in three locations in Alabama from 1990 to 1992. In 1992–1993, the Alabama legislature created the Impaired Drivers Trust Fund. This trust fund allowed the expansion of the ICBM model and serves as the basis for the state’s activities related to grants from the Federal TBI Program. In 1997, the Alabama legislature enacted the Alabama Head Injury and Spinal Cord Injury Registry Act, designating the Alabama Department of Public Health the lead state agency for data and registry activities. Alabama’s Department of Rehabilitation Services was designated the lead state agency for TBI for Federal TBI Program Grants from the Health Resources and Services Administration (HRSA) in 1997. This department has established relationships and works closely with several state agencies and organizations, including the Alabama Head Injury Foundation, founded in 1983; TBI programs for adults and children within the Alabama Department of Rehabilitation Services; and the University of Alabama’s TBI Model System of Care, funded in 1998 by the National Institute for Disability and Rehabilitation Research (NIDRR), among others. Alabama has received funding for TBI-related surveillance from the federal Centers for Disease Control and Prevention (CDC), although it was reported in the summer of 2005 that funding for the current cycle had not been approved. As of the summer of 2005, Alabama had not developed a Medicaid TBI waiver. The federally mandated protection and advocacy (P&A) system for adults and children with developmental disabilities in Alabama is the Alabama Disabilities Advocacy Program. Since 1976, this program, at the direction of Alabama’s governor, has been administered by the clinical program of the University of Alabama School of Law. The Alabama Disabilities Advocacy Program is also the entity in Alabama designated to receive Protection and Advocacy for TBI (PATBI) Grants from HRSA. At the time it applied for a PATBI Grant, the Alabama Disabilities Advocacy Program had already operated several programs that served persons with
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Evaluating the HRSA Traumatic Brain Injury Program TBI and individuals with other disabilities, but it had limited capacity to serve persons with TBI (Table D-1). TBI Planning Grants. None. TBI Implementation Grants. To address the lack of service coordination for children with TBI, Alabama’s Department of Rehabilitation Services, in collaboration with the Alabama Head Injury Foundation, applied for and received a TBI Implementation Grant from HRSA for a statewide pediatric service delivery model known as PASSAGES. The PASSAGES model, an expansion of Alabama’s ICBM for adults with TBI, was designed to increase interagency collaboration, offer education/training opportunities for families and service providers, and provide coordinated intervention activities to strengthen the existing continuum of care for children with TBI. The Implementation Grant also supported Alabama’s efforts to build the capacity to link individuals of all ages who experience TBI to needed community-based services and supports through the Alabama Head and Spinal Cord Injury Registry, established in 1998. TBI Post-Demonstration Grants. Alabama received three TBI Post-Demonstration Grants from HRSA. The focus of the first grant was on the identification, accommodation, and referral of adolescents in schools to the Alabama’s Department of Rehabilitation Services’ Service Linkage Program; and educating family members about TBI. The second grant was used to address education and outreach to providers and the public about psychiatric disorders and TBI. The third grant was used to provide education and outreach about domestic violence and TBI, including providing outreach at women’s shelters. Protection and Advocacy for TBI Grants. The Alabama Disability Advocacy Program’s first P&A Grant from HRSA focused on mental illness and mental retardation. Newly available data were used to identify TBI cases in populations with mental illness and mental retardation and expand work related to the state’s Wyatt v. Sawyer case to end warehousing of individuals with mental illness and mental retardation, as well as to conduct outreach with TBI-serving agencies in the state to let them know about the Alabama Disabilities Advocacy Program. TABLE D-1 Federal TBI Grants Received by Alabama Federal TBI Grant Received from HRSA Years Awarded Planning Implementation 1997, 1998, 1999, 2000 Post-Demonstration 2002, 2003, 2004 Protection and Advocacy 2002, 2003, 2004, 2005
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Evaluating the HRSA Traumatic Brain Injury Program The Alabama Disabilities Advocacy Program’s subsequent PATBI Grants from HRSA supported identifying and advocating for school children with TBI; improving services in the community for individuals dually diagnosed with mental illness and TBI; and providing training for law enforcement officers, mental health center directors, and mental health center clinical staff. TBI-Specific State Funding: Trust Fund, Waiver, Other In 1993, the Alabama legislature passed a law creating the Impaired Drivers Trust Fund to benefit individuals with brain and spinal cord injury. This trust fund is funded via fines on “driving under the influence” convictions, with assessments of $100 per conviction, and is the principal funding source for TBI (and spinal cord injury). A portion of trust fund revenues is used to support Alabama’s TBI registry; the remaining funds provide direct or purchased services. Alabama’s Impaired Drivers Trust Fund supports the following types of services: Alabama Head Injury Foundation’s toll-free help line, resource coordination, the ICBM, State of Alabama Independent Living Service, extended job support, respite care for families, housing assistance, and recreation. An advisory board oversees the use of the state’s Impaired Drivers Trust Fund. Trust fund revenues are estimated at $1.2 million. Money from the trust fund was used to provide 678 individuals with information and referral services and 1,359 individuals with other services in 2003. Although Alabama serves individuals with TBI through several state programs, it does not report dedicated funding for TBI. The state has not developed a TBI-specific Medicaid waiver, but it does have several Medicaid waivers that could be accessed by individuals with TBI. Services for People with TBI and Their Families To help individuals with TBI and their families to gain access to needed services and supports across state agencies and organizations, Alabama’s current established core service delivery network—the Interactive Community-Based Model—uses care coordinators, PASSAGES (pediatric) care coordinators, Alabama Head Injury Foundation family resource coordinators, and the TBI registry service linkage system. The state TBI registry, which is part of this system, allows for the identification and followup of individuals who sustain a TBI through hospital discharge data. The ICBM for adults was first piloted in the early 1990s. Alabama identified expansion of the ICBM to serve children and providing education and referral outreach for specific TBI populations for its Post-Demonstration Grants from HRSA.
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Evaluating the HRSA Traumatic Brain Injury Program Interorganizational Collaborations and Coordination Related to TBI The coordination and delivery of services and supports for persons with TBI and their families in Alabama is facilitated by a history of established relationships among key individuals and organizations involved with TBI throughout the state, as well as by more than two decades of state government leadership and commitment to addressing TBI. The lead state agency for TBI, the Alabama Department of Rehabilitation Services, collaborates closely with the Alabama Head Injury Foundation, the Alabama Disability Advocacy Program, the Alabama Department of Public Health, the University of Alabama, and others. TBI-Related Data Monitoring and Evaluation The Alabama Head Injury and Spinal Cord Injury Registry Act of 1998 mandated development of a TBI registry that has become an important component of Alabama’s core service delivery for individuals with TBI. Hospital discharge data are reported to the Alabama Department of Public Health, which works closely with the TBI registry coordinator of the Alabama Department of Rehabilitation Services. Consumers are contacted 3 months post-injury and provided with information and linkage to resources. In the summer of 2005, Alabama had recently completed a 3-year cycle of funding from CDC for TBI surveillance; however, the state did not receive continuing support. The TBI surveillance data have been sent to the state legislature and are used to support injury education programs. The Alabama Department of Public Health is represented on the board of Alabama’s Impaired Drivers Trust Fund. Alabama has access to more and better TBI data than many states, but the state has done little evaluation of its TBI programs. HRSA Grant Experience: Alabama’s Successes and Challenges With its Federal TBI Program Grants, Alabama has been successful in implementing its community-based PASSAGES model for children with TBI and has been able to obtain some state support to sustain the program (i.e., maintaining care coordinator positions). Communication and interagency linkages to maximize services and supports for individuals with brain injuries and their families were reported to have improved in the state. Outreach efforts to train providers, individuals with TBI and their families, and others in Alabama—especially outreach efforts involving schools and domestic violence programs—were reported to be successful. Efforts to bridge gaps in the mental health sector have been more difficult and require continued focus. P&A efforts on behalf of persons with TBI in Alabama also were reported to have increased.
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Evaluating the HRSA Traumatic Brain Injury Program CALIFORNIA STATE TBI PROFILE Background California has faced the obstacles of large geographic size and diverse population in seeking to develop and coordinate services and supports for persons with TBI and their families throughout the state, but the state has nevertheless managed to undertake several initiatives for this population. Early programs for persons with TBI and their families in the state included the following: (1) caregiver resource centers, developed in 1985 by the California Department of Mental Health to provide family support and service coordination for caregivers of brain-injured adults; (2) the Traumatic Brain Injury Project (now called Traumatic Brain Injury Services of California), established in 1990 as a result of action passed in 1988 to develop and pilot a post-acute continuum of care for persons with acquired TBI; (3) a TBI trust fund established in 1988 to support service programs; (4) a program of 28 independent living centers funded by the California Department of Rehabilitation to serve persons with a variety of disabilities; and (5) other programs. Injury surveillance has been undertaken by the California Department of Health Services. This department received a 7-year surveillance grant from CDC and was part of CDC’s national surveillance effort. In addition, California has an NIDRR-funded TBI Model System of Care;3 however, this does not participate substantially with California’s efforts to serve individuals with TBI and their families. When California applied for its TBI Planning Grant from HRSA, it designated the California Department of Mental Health as California’s lead state agency for TBI; however, California had no clearly defined responsibility vested in any single state agency, no statewide TBI advisory committee, no strategic plan, and no statewide needs survey for the TBI population. The California Department of Mental Health successfully brought together diverse stakeholder groups under the Planning Grant from HRSA. The statewide TBI advisory council’s activities ended soon after California was denied an Implementation Grant. A stakeholder workgroup to advise the California Department of Mental Health on TBI services is provided for in a state statute, however, and this group continued after the grant. The California government has undergone budgetary crises and reorganizations in recent years. 3 The NIDRR TBI Model System of Care Program provides grants to 16 state TBI Model System of Care to study the course of brain injury recovery and outcomes following the delivery of a coordinated system of emergency care, acute neurotrauma management, comprehensive in-patient rehabilitation, and long-term interdisciplinary followup services.
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Evaluating the HRSA Traumatic Brain Injury Program The Brain Injury Association of California established in 1993 was involved with California’s early HRSA grant efforts, but this organization was not operational as of the summer of 2005. A brain injury hotline sponsored by a state-supported TBI program to facilitate information and referral was forced to close in July 2005 because of a lack of funding. The California Department of Mental Health has worked closely with the California Department of Rehabilitation, Collaborative Services Section, for several years and continues to do so. The California Department of Health Services’ application to CDC for TBI surveillance funding was not approved. As of the summer of 2005, although California’s statewide TBI advisory board was no longer meeting, the California Department of Mental Health’s TBI coordinator continued as coordinator as part of her broader responsibilities. California’s federally mandated statewide P&A system for adults and children with developmental disabilities is Protection and Advocacy, Inc. This organization has served people with disabilities, including individuals with TBI, since 1978. It has 200 employees at four locations throughout California. Protection and Advocacy, Inc., is also the recipient of California’s PATBI Grants from HRSA. The organization also operates the Office of Clients’ Rights Advocacy under a contract with the California Department of Developmental Services; it also operates the Office of Patients’ Rights under contract with the California Department of Mental Health. Protection and Advocacy, Inc., served individuals with TBI within its general disability programs prior to receiving PATBI Grant funding from HRSA, but the organization’s programming did not have a TBI-specific focus (Table D-2). TBI Planning Grants. At the time of California’s application for a TBI Planning Grant from HRSA, the state had designated the California Department of Mental Health as the lead state agency for TBI activities, but it had no TBI service infrastructure. The Planning Grant focused on development of three of the four core capacity components of a TBI service system: a statewide TBI advisory board, a statewide TBI needs and resources assessment, and a statewide TBI action plan.4 The state applied for two 1-year Planning Grants from HRSA to complete these tasks. TBI Implementation Grants. California submitted an application for a TBI Implementation Grant from HRSA, but the application was denied. 4 The four core capacity components of a TBI service system are the following: (1) a lead state agency and state staff person responsible for state TBI activities; (2) a statewide TBI advisory board (or council); (3) a statewide TBI needs/resources assessment; and (4) a statewide TBI action plan that is a comprehensive, community-based system of care that addresses the need of individuals with TBI and their families.
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Evaluating the HRSA Traumatic Brain Injury Program TABLE D-2 Federal TBI Grants Received by California Federal TBI Grant Received from HRSA Years Awarded Planning 1999, 2001 Implementation Post-Demonstration Protection and Advocacy 2003, 2004, 2005 TBI Post-Demonstration Grants. None. Protection and Advocacy for TBI Grants. California Protection and Advocacy, Inc. has focused its PATBI Grant from HRSA on the TBI Community Living Project to increase community living options for TBI survivors. The PATBI Grant funds were directed to do the following: (1) increase awareness of TBI activities in the community; (2) increase the understanding and capability of the Protection and Advocacy, Inc. to serve the TBI community; and (3) ensure participation of the TBI community as California redesigns its long-term care system in response to the Olmstead decision.5 TBI-Specific State Funding: Trust Fund, Medicaid Waiver, Other California established a TBI trust fund in 1988 to provide services to individuals and TBI program support. The trust fund receives 0.66 percent of State Penalty Fund revenues from vehicle code violations, and has been generating approximately $1 million annually. In FY 2004, money from California’s TBI trust fund was used to provide services for 1,204 individuals, as well as to cover personnel and evaluation costs. Another portion was used to draw down federal vocational rehabilitation funds, serving 30 individuals. State respondents report that trust fund resources have been quickly spent down for services as California’s budgetary crisis continues. There are no Medicaid waivers or sources of dedicated funding for TBI other than the trust fund in California. 5 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.
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Evaluating the HRSA Traumatic Brain Injury Program Services for People with TBI and Their Families Services for people with TBI and their families in California are formally coordinated through seven California Department of Mental Health sites that serve limited numbers of clients, and beyond these sites, coordination of services does not occur. The seven California Department of Mental Health sites offer an umbrella of services and are listed on a state-sponsored website. These sites—two of which are hospital-based and five of which are community-based—demonstrate diverse approaches to service delivery and coordination. Services and coordination available through these sites is reportedly good, but little is known about the independent services used by individuals served outside these sites. The TBI-related services provided in California do not focus on children. Interorganizational Collaborations Related to TBI California’s Department of Mental Health, as designated lead state agency for TBI, developed and facilitated coordination of the TBI advisory board during the period of California’s TBI Planning Grant activities. Obtaining representation from all regions of California was challenging, and the group struggled to find common goals. With professional facilitation, however, the group was able to come to consensus on a statewide action plan for a comprehensive, community-based system of care for TBI. After the California’s TBI grant support from HRSA ended and the state experienced continuing fiscal crisis, the state’s TBI advisory board disbanded and many state offices were reorganized. As of the summer of 2005, the Brain Injury Association of California was no longer operational. A brain injury hotline operated in its place for a while but had to close in July 2005 because of a lack of funding. California’s TBI coordinator continues to collaborate informally with the California Department of Vocational Rehabilitation and serves as a TBI contact as needed, in addition to performing other official duties. Injury surveillance in California has been undertaken by the California Department of Health Services, but funding from CDC for TBI surveillance has ended and will not be continued. TBI-Related Data Monitoring and Evaluation During the period of California’s TBI Planning Grant from HRSA, the California Department of Health Services, Injury and Epidemiology Section, developed TBI incidence data and attended statewide TBI advisory board meetings. California received CDC funding for TBI surveillance for a 7-year period but was not subsequently refunded. As of the summer of 2005, California did not have a TBI registry; however, the state does mandate the submission of hospital data to the state and has electronic data
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Evaluating the HRSA Traumatic Brain Injury Program from hospitals, including both discharge and emergency room data, which could be linked with death records from Vital Statistics for a comprehensive view of TBI in the state. HRSA Grant Experience: California’s Successes and Challenges California succeeded in developing the core TBI program components under its TBI Planning Grant from HRSA. California’s statewide TBI advisory board experienced an initial lack of focus and difficulty coming together as a group, but it was able to come to consensus in identifying priorities for the statewide TBI action plan. California did not receive funding from HRSA for a TBI Implementation Grant. Fiscal crisis in the state further contributed to reorganizations and placed activities of the state’s TBI-related infrastructure on hold. The lack of strong community-based organizations, including the Brain Injury Association of California, also contributed to difficulties sustaining this basic infrastructure. Protection and Advocacy, Inc., has reportedly made progress moving forward its focus on TBI at the organizational and case levels and maintains contact with the California Department of Mental Health’s TBI coordinator, who continues to serve as the state TBI contact. The California Department of Rehabilitation, Collaborative Services Section, continues to work together with the California Department of Mental Health’s TBI coordinator. COLORADO STATE TBI PROFILE Background Colorado had a long history of grassroots activity involving persons with brain injury and their family members, state agencies, and other stakeholders prior to its involvement with the Federal TBI Program administered by HRSA. The Brain Injury Association of Colorado formed in 1980, has long been an active force behind brain injury advocacy and systems and services development. The Rocky Mountain Regional Brain Injury Center, established in 1989, has played an important role in developing TBI services and systems in Colorado. Developed as a 4-year federally funded regionwide project from the Rehabilitation Services Administration to Colorado Rehabilitation Services (now the Colorado Division of Vocational Rehabilitation), the Rocky Mountain Regional Brain Injury Center facilitated the beginning development of a statewide infrastructure to support persons with TBI and their families. In 1992, the Brain Injury Association of Colorado and the Rocky
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Evaluating the HRSA Traumatic Brain Injury Program Mountain Regional Brain Injury Center established the Brain Injury Task Force, a broad-based coalition of state agency representatives, persons with TBI and their family members, Craig Hospital, and other providers and stakeholders formed to influence public policy and legislation in areas relating to brain injury. The Brain Injury Association of Colorado and the Brain Injury Task Force have successfully advocated for legislation in areas of brain injury prevention, automobile insurance, Medicaid managed care, attendant care, and other issues. In 1997, the Brain Injury Legislative Coalition was established to merge the efforts of the Brain Injury Association of Colorado, the Brain Injury Task Force, the Pikes Peak Challenge Committee for Long-Term Funding for Persons with Brain Injury, and other stakeholders to make recommendations to establish a catastrophic fund for Coloradoans with brain injury. Soon thereafter, representatives from the Brain Injury Association of Colorado and the Brain Injury Task Force approached the manager of the Colorado Department of Human Services’ Office of Behavioral Health and Housing (CDHS-OBHH) (formally the Colorado Office of Rehabilitation Services) to lead Colorado’s TBI-related activities. CDHS-OBHH is responsible for Colorado’s Alcohol and Drug Abuse Division, Division of Mental Health, Developmental Disabilities Services, and Supportive Housing and Homeless Programs. CDHS-OBHH led efforts to form Colorado’s TBI State Planning Group, a subgroup of which prepared the state’s first application to HRSA for a TBI Planning Grant. Colorado reapplied for a Planning Grant from HRSA in 1999 and was funded, following a year of CDHS-OBHH support, to begin development of Colorado’s Brain Injury Planning Initiative to establish the four core capacity components of a TBI service system. Colorado is home of Craig Hospital’s NIDRR-funded TBI Model System of Care, and has conducted CDC-funded TBI surveillance. Colorado developed a Medicaid TBI waiver in 1995 and established a TBI trust fund in 2002. Colorado’s federally mandated statewide P&A system for adults and children with developmental disabilities is the Center for Legal Advocacy, established in 1976. This organization provides legal representation, advocacy, education, and legislative analysis to protect and promote the rights of people with disabilities and older people in Colorado. It is also the state recipient of PATBI Grants from HRSA. The Center for Legal Advocacy has offices in Denver and Grand Junction, and served persons with TBI within its disability programs, but did not address TBI as a specific programmatic focus at the time of its PATBI Grant application. The Center for Legal Advocacy met with Colorado’s TBI program director as it prepared its PATBI Grant application to identify program priorities. The Center for Legal Advocacy became part of Colorado’s statewide TBI advisory board at that time (Table D-3).
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Evaluating the HRSA Traumatic Brain Injury Program neighborhoods, often through partnerships with faith-based organizations. Family and peer support programs involving local clergy were successfully implemented. The third grant provided education and outreach to staff at the state’s “one-stop” centers, available in each county to provide vocational support, employment, and workforce development services. Protection and Advocacy for TBI Grants. New Jersey Protection and Advocacy, Inc. has focused efforts on outreach and education strategies to leverage the limited PATBI Grant funds available from HRSA. The organization’s PATBI Grants from HRSA are directed to the following: (1) planning and assessment of P&A services with community partners, including state agencies, the Brain Injury Association of New Jersey, and consumer groups; (2) providing information and referral, legal advocacy and representation, and systemic and legislative advocacy; (3) providing outreach, training, and technical assistance, especially in communities of color; (4) promoting and supporting self-advocacy of persons with TBI and their families; and (5) establishing a distinct but integrated TBI P&A program in New Jersey. TBI-Specific State Funding: Trust Fund, Medicaid Waiver, Other A Medicaid 1915(c) home and community-based waiver for individuals with ABI was created by New Jersey in 1993. During the period that New Jersey was operating with Federal TBI Program Grants from HRSA, New Jersey’s Division of Disability Services was able to secure additional state appropriations to increase the available waiver slots by 100. As of the summer of 2005, 350 individuals were being served under New Jersey’s Medicaid waiver. In 2002, New Jersey passed legislation creating a TBI trust fund. The TBI trust fund in New Jersey provides flexible funding support for services to individuals and program development activities, which are contracted to the Brain Injury Association of New Jersey. Administered by the New Jersey Division of Disability Services (formerly, State Office on Disability Services), the TBI trust fund has been used to sustain programs and activities initiated with Federal TBI Program Grant funding from HRSA and shown to be successful (e.g., training and outreach). The TBI trust fund generates approximately $3.4 million per year and is funded by a $.50 surcharge on motor vehicle registrations. As of the summer of 2005, New Jersey’s TBI trust fund had provided direct financial support to approximately 450 individuals. In 2004, the New Jersey legislature established a TBI research fund, making New Jersey the first state with dedicated funding for research on TBI. The TBI research fund, which was spearheaded by the father of a son with a brain injury, is funded by a surcharge on motor vehicle accidents.
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Evaluating the HRSA Traumatic Brain Injury Program Services for People with TBI and Their Families New Jersey’s TBI-related services are provided through informal collaboration and are not formally coordinated. When TBI-related services are coordinated, the coordination occurs through a specific program, such as Medicaid, that includes case management as part of New Jersey’s Medicaid TBI waiver. State services in New Jersey are available through generic disability programs rather than TBI-specific services. Respondents identified the justice system as an area where collaboration and linkages need further development. Meetings between the justice system and the New Jersey Division of Disability Services were initiated in fall 2005. Interorganizational Collaborations Related to TBI New Jersey’s TBI services involve multiple agencies and offices of state government, and close collaboration with the Brain Injury Association of New Jersey. Both the state program and New Jersey Protection and Advocacy, Inc., have expanded outreach and education to involve new TBI partnerships, including efforts with faith-based communities and inner-city minority neighborhoods. There is interest in improving communications and collaboration between advisory board organizations and the justice system. TBI-Related Data Monitoring and Evaluation The New Jersey Department of Health and Senior Services, Center for Health Statistics, serves as the TBI data resource for New Jersey’s statewide TBI advisory board. The major data source used by the TBI advisory board has been CDC-funded TBI surveillance data; however, CDC surveillance funding has not been continued in this funding cycle. Respondents noted they have no good data on mild and moderate TBI. New Jersey’s Center for Health Statistics has been working since 2001 with two groups in the state on development of TBI and SCI registries that will provide patient-level data. The TBI and SCI registries were “brought to life” by the Christopher Reeve Foundation and the father of a TBI survivor and are viewed as an important avenue to pursue for TBI prevention and service planning. New Jersey’s TBI research fund, established in 2002 and funded through a surcharge on motor vehicle accidents, has supported some minimal evaluation to date. HRSA Grant Experience: New Jersey’s Challenges and Successes New Jersey used its TBI Program Grants from HRSA as seed money, thereby drawing a focus to TBI in state government, with providers, and in
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Evaluating the HRSA Traumatic Brain Injury Program communities. Funding levels and short time frames for 1-year grants in the state were reported to be frustrating. Nonetheless, there were reported improvements in direct TBI program activities, such as the mentor program and building partnerships in underserved, minority communities. New Jersey’s TBI advisory board was developed as a result of HRSA’s requirements under the Federal TBI Program. Spillover effects where change was a consequence but not a direct result of HRSA funding were also apparent in New Jersey. Such effects include an increased number of Medicaid TBI waiver slots, the establishment of a TBI trust fund, and the establishment of a TBI research fund in New Jersey. Through TBI trust fund disbursements, New Jersey has been able to sustain successful components initiated through the HRSA grant, such as training and education efforts. New Jersey Protection and Advocacy, Inc., has engaged in several activities in tandem with the state program, addressing similar areas of need. OHIO STATE TBI PROFILE Background Ohio has a history of community advocacy for children and adults with brain injury and their families beginning in 1983, with the incorporation of the Ohio Brain Injury Association (now known as the Brain Injury Association of Ohio). In 1990, Ohio legislation created the Ohio Head Injury Advisory Council (now known as the Brain Injury Advisory Committee) as the state-level, intergovernmental planning and coordinating body. The mission of the new organization was complementary to the mission of the Brain Injury Association of Ohio—to improve services to persons with brain injury through development of a comprehensive, coordinated delivery system and through prevention efforts. Ohio’s Brain Injury Advisory Committee and its affiliated Head Injury Program (now Brain Injury Program) were originally located within the Ohio Department of Health, but were both transferred to the Ohio Rehabilitation Services Commission in 1991 to maximize federal matching funds through the Vocational Rehabilitation Act. The Ohio’s Brain Injury Advisory Committee and the Brain Injury Association of Ohio have worked closely through the years. Ohio’s first statewide TBI needs/resources assessment was completed in 1992, and joint action (strategic) plans were developed for 1995–1999, with plans for 1999–2004, and 2005 to follow. The ongoing partnership between Ohio’s Brain Injury Advisory Committee and the Brain Injury Association of Ohio led to development of “The Ohio Plan: Building Ramps to the Human Service System for People with Brain Injury”—with a vision for a comprehensive model service coordination continuum and a strategy to further develop the model continuum. The
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Evaluating the HRSA Traumatic Brain Injury Program system’s three components are as follows: (1) help line and information clearinghouse; (2) community support network; and (3) individualized resource facilitation services. Ohio’s TBI Implementation Grant from HRSA focused on developing Operation MAPS, the community support network component, by adding four community support networks to the two already developed by the Brain Injury Association of Ohio. A total of 15 community support networks were envisioned statewide. “The Ohio Plan” also drew expertise and support from Ohio State University’s NIDRR-funded TBI Model System of Care project, the Ohio Valley Center for Brain Injury Rehabilitation and Prevention, other state agencies, and community organizations. Ohio does not have a TBI trust fund. The state has eight Medicaid home and community-based waivers, but none are specific to TBI. Ohio’s federally mandated statewide P&A system for adults and children with developmental disabilities is the Ohio Legal Rights Service, an organization with a history of working with persons with TBI. This organization is also the recipient of PATBI Grants from HRSA. The Ohio Legal Rights Service has served on Ohio’s Rehabilitation Services Commission Brain Injury Advisory Committee since well before the HRSA grant. The organization has worked on creating a model Medicaid waiver, housing issues, and other TBI-related issues (Table D-6). TBI Planning Grants. None. TBI Implementation Grants. Ohio’s first TBI Implementation Grant application to HRSA did not get funded, but the state did receive funding for an Implementation Grant in 1998. The Implementation Grant was viewed as a way to add four additional community support networks to Ohio’s network of two community support networks. Subcontracts to the Brain Injury Association of Ohio were developed to establish sites in the new service areas. Securing additional funding to sustain all the sites proved to be a challenge, and Ohio has not been able to fund two community support networks of the six total community support networks established statewide. TABLE D-6 Federal TBI Grants Received by Ohio Federal TBI Grant Received from HRSA Years Awarded Planning Implementation 1998, 1999, 2000 Post-Demonstration 2002, 2003, 2004 Protection and Advocacy 2002, 2003, 2004, 2005
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Evaluating the HRSA Traumatic Brain Injury Program TBI Post-Demonstration Grants. Ohio received three TBI Post-Demonstration Grants from HRSA. The first was to enhance collaboration between Ohio’s statewide TBI advisory board and the Brain Injury Association of Ohio in order to increase buy-in of participants. Ohio’s second and third Post-Demonstration Grants had a different focus and involved working with a partner in Akron to conduct hospital-based education and work with families of individuals with TBI. Protection and Advocacy for TBI Grants. The Ohio Legal Rights Service directed its PATBI Grants from HRSA to the following: (1) adding, identifying, and providing protection and advocacy to children with TBI in special education to its agency priorities; (2) increasing the knowledge and skills of parents, educators, other professionals, and advocates and expanding planning activities with TBI stakeholders; and (3) expanding the capacity of the Brain Injury Association of Ohio’s community support networks and education advocates. TBI-Specific State Funding: Trust Fund, Medicaid Waiver, Other Ohio does not have a TBI trust fund or a TBI-specific waiver, although persons with TBI can access one of six Medicaid home and community-based services waivers (three nursing facility level, three intermediate-care facilities for people with mental retardation) if eligible. The Ohio Rehabilitation Services Commission receives $226,012 in general revenue that provides funding for planning, prevention, research, services, and development relating to TBI. Services for People with TBI and Their Families Ohio uses the community support network model outlined in “The Ohio Plan” to coordinate services for persons with TBI and their families in the four service areas where community support networks have been established. Other areas of the state are not served by the community support networks. A statewide database for information and referral is also available to facilitate access to TBI-related services. As of the summer of 2005, nine agencies were represented on Ohio’s TBI advisory board, some of which serve persons with TBI and some of which do not. There was no single point of entry. Service coordination in Ohio is reportedly “haphazard,” depending on which agency provides service, what benefits are provided, which door one comes through. Generic Medicaid waivers are available for individuals with TBI who meet eligibility requirements.
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Evaluating the HRSA Traumatic Brain Injury Program Interorganizational Collaborations Related to TBI Ohio involves nine TBI agencies and other stakeholder organizations on its statewide TBI advisory board for the Federal TBI Program Grants from HRSA. Brain injury and other organizations, including the Ohio Legal Rights Service, had been collaborating for many years prior to the grants and continue to do so. Until recently, the Brain Injury Association of Ohio and Ohio’s TBI advisory board conducted joint strategic planning. Ohio State University’s TBI Model System of Care funded by NIDRR has provided strong technical and information analytic assistance to support development of services coordination. Many organizations have “intertwined” membership and share board representatives. Ohio recently conducted a planning retreat to refocus the statewide TBI advisory board to its “advisory” mission and clarify relationships with service-directed organizations such as the Brain Injury Association of Ohio. TBI-Related Data Monitoring and Evaluation Ohio has a legally mandated trauma registry, which is not used for followup or service assistance. Confidentiality issues reportedly pose challenges to the state’s use of patient-level data. The state relies on CDC information about TBI and does not have a CDC-funded surveillance program. With assistance from the Ohio State University TBI Model System of Care funded by NIDRR, Ohio has developed a comprehensive information and referral database of services available statewide. The TBI Model System has provided data and information analysis in support of TBI services delivery in the state. HRSA Grant Experience: Ohio’s Challenges and Successes Ohio has successfully used grants from the Federal TBI Grant Program administered by HRSA to develop community support networks to advance Ohio’s TBI plan. Still, sustainability after HRSA funding has ended has been a problem. The state has not been able to fund two community support networks of the six total community support networks established statewide (including four HRSA-funded). Ohio’s TBI plan was initiated prior to the HRSA grant on the basis of a close collaboration involving the Ohio Brain Injury Advisory Committee and the Brain Injury Association of Ohio. The Ohio Legal Rights Service has participated in these efforts and has directed its PATBI Grant funding from HRSA to support state activities. Ohio has many brain injury commit-
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Evaluating the HRSA Traumatic Brain Injury Program tees and advisory boards. As the state’s TBI-related efforts have matured and increased in complexity, some confusion has emerged regarding organizational missions and direction. Attempts were being made in the summer of 2005 to clarify roles and relationships. WASHINGTON STATE TBI PROFILE Background Washington State has addressed issues associated with TBI through programs and initiatives within the Washington Department of Social and Health Services since the 1980s. A multiagency task force convened in Washington State at that time resulted in a study and training of individuals with TBI and their families through a contract with the Brain Injury Association of Washington (then the Washington State Head Injury Foundation) and sponsored by the Washington State Division of Vocational Rehabilitation. In addition, the multiagency task force recommended designating a TBI coordinator within each division of the Washington Department of Social and Health Services. In 1994, the Washington Department of Social and Health Services’ Aging and Adult Services Administration developed a Medicaid demonstration waiver to provide community or residential services to individuals with TBI. The waiver was not renewed, but the department’s Medicaid elderly and disabled waiver was modified and expanded to meet the needs of individuals with TBI. The University of Washington has a TBI Model System of Care funded by NIDRR and an Injury Prevention Center funded by CDC. The state-initiated partnership with the TBI Model System has worked closely with researchers at the University of Washington and the TBI Model System through its HRSA grant. As of the summer of 2005, TBI-related studies were continuing at Harborview Hospital and included research addressing TBI and substance abuse. When Washington applied for a TBI Planning Grant from HRSA, individuals had been identified as TBI coordinators for Washington Department of Social and Health Services divisions, but no overall responsibility had been assigned for coordination of these and other services in a comprehensive, statewide manner, and services remained fragmented. The Washington State legislature has passed primary prevention key head injury legislation—including mandatory use of car seats and seat belts, motorcycle helmets, and stronger drunk driving laws—but the state has been unable to establish a TBI trust fund. The Brain Injury Association of Washington discontinued operation following fiscal and other difficulties
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Evaluating the HRSA Traumatic Brain Injury Program after 2001; as of the summer of 2005, efforts were underway to rebuild the organization. Washington State does not have a Medicaid TBI waiver or other dedicated funding for TBI, but includes individuals with TBI in its numerous home and community-based waivers. The federally mandated statewide P&A system for adults and children with developmental disabilities in Washington State is Washington Protection and Advocacy, which has provided advocacy and legal representation to individuals with disabilities for more than 30 years. This organization is also the recipient in the state of PATBI Grants from HRSA. Washington Protection and Advocacy had provided services for individuals with TBI as part of its general disabilities programming, but it did not have a specific TBI focus at the time it applied for its first PATBI Grant from HRSA. Washington Protection and Advocacy has worked with Washington’s statewide TBI advisory board and works closely with the Washington State TBI program (Table D-7). TBI Planning Grants. When Washington State applied for its TBI Planning Grants from HRSA, the Division of Rehabilitation served as lead state agency for TBI. Washington’s first Planning Grant focused on developing a statewide TBI advisory board; the second Planning Grant focused on developing a statewide TBI needs/resources assessment and a statewide TBI action plan. Washington State experienced initial difficulties searching for and retaining a project director. A number of TBI advisory board processes reportedly posed challenges to effective collaboration and development of core TBI components. It was reported that (1) large, diverse membership made consensus difficult; and (2) attendance at monthly meetings was difficult for members from regions separated by geographic distance. Nevertheless, all of the state’s Planning Grant goals were addressed. A University of Washington researcher under contract to the advisory board provided data and analytic support for the statewide TBI needs/resource assessment. TABLE D-7 Federal TBI Grants Received by Washington State Federal TBI Grant Received from HRSA Years Awarded Planning 2000, 2001 Implementation 2003, 2004, 2005 Post-Demonstration Protection and Advocacy 2002, 2003, 2004, 2005
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Evaluating the HRSA Traumatic Brain Injury Program TBI Implementation Grants. For its TBI Implementation Grant applications to HRSA, Washington State changed its lead state agency for TBI to the Disabilities and Long-Term Care Administration (now Aging and Disability Adult Services Administration, Home and Community Services Division). The new lead agency has been considered a better fit for the program given its broader array of services for persons with TBI. The Brain Injury Association of Washington was not a viable partner at the time, but the state developed and maintained strong collaboration with the TBI Model System of Care funded by NIDRR, Washington Protection and Advocacy, and other state agencies. Washington State’s TBI Implementation Grants were developed from Washington’s statewide TBI action plan, refined with assistance from the TBI Technical Assistance Center, and addressed the following goals: (1) create a strong statewide information and resources system that would increase appropriate referral and services for persons with TBI; (2) increase capacity for appropriately identifying and serving persons with TBI within state and other systems that build upon the needs assessment; (3) collaborate with state and other agencies that administer services for persons with brain injury and their families in developing programs to address housing/service needs of persons with TBI; and (4) strengthen Washington’s statewide TBI advisory board. Washington State, with the NIDRR-funded TBI Model System of Care, developed toolkits and educational materials and videoconferences as part of the Implementation Grant. The TBI Model System in the state had established capabilities in these areas, and the partnership resulted in several sustainable products. TBI Post-Demonstration Grants. None. Protection and Advocacy for TBI Grants. Washington Protection and Advocacy directed its PATBI Grant from HRSA to enhance and add focus to the services of its resource systems advocacy teams for the needs of people with TBI, and the provision of new legal advocacy team services. The organization also conducted outreach with its own organization and with community providers and has been an active collaborator with state agencies, other agencies, and the University of Washington’s TBI Model Systemsof Care. TBI-Specific State Funding: Trust Fund, Medicaid Waiver, Other Washington State has no dedicated funding sources for TBI. The state does not have a Medicaid TBI waiver or a TBI trust fund. On the other hand, the state does have a medical institution income exemption that allows persons to have money to maintain their homes, a community transition service, and a residential care discharge allowance. Persons with TBI
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Evaluating the HRSA Traumatic Brain Injury Program in the state may use the Medicaid aging and disabled waiver on the basis of a multifactorial assessment, including psychosocial factors, and other eligibility requirements. Services for People with TBI and Their Families Many people are reported to receive in-home services throughout Washington State. The Seattle area is location to a cluster of facilities with services for persons with TBI, including University of Washington’s Harborview Hospital, but Seattle-based services are not readily accessible to the state’s more rural residents. More limited hospital services are available in other parts of the state. Community-based services are difficult to access in urban and rural areas. There is limited coordination of services unless an individual is enrolled as a participant in a specific program that offers case management or related services. Interorganizational Collaborations Related to TBI Interorganizational collaboration in Washington State is complicated by geography, with services located in metropolitan Seattle, state offices in Olympia, and a large rural population in the eastern part of the state. Pulling together diverse organizations for Washington’s statewide TBI advisory board was an early challenge to the state’s HRSA grant efforts. With the shift of the lead state agency for TBI after the state received a Planning Grant from HRSA, the statewide TBI advisory board was downsized and has since achieved more effective results. Interlocking directorates on advisory boards of TBI-collaborating organizations is common and is viewed as an effective method of interorganizational communication. The Washington State TBI program and Washington Protection and Advocacy have separate advisory boards. The Washington State TBI advisory board meets in the offices of Washington Protection and Advocacy. TBI-Related Data Monitoring and Evaluation The Washington State Aging and Disability Adult Services Administration is using several sources to collect data on persons with TBI served by state services. The University of Washington’s TBI Model System of Care funded by NIDRR and university-affiliated researchers have provided support to the HRSA grant’s information and evaluation activities from the beginning. Washington Protection and Advocacy and other groups have also provided evaluation input. However, the lack of, and need for data
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Evaluating the HRSA Traumatic Brain Injury Program about TBI was identified as an ongoing issue of particular importance when approaching the legislature. HRSA Grant Experience: Washington State’s Challenges and Successes Washington State experienced difficulties in coordinating agencies and organizations on its statewide TBI advisory board and in finding an appropriate lead state agency “home” for the state TBI program in the initial stages of its Planning Grant from HRSA. The loss of the Brain Injury Association of Washington as an organization and statewide TBI advisory board participant also challenged the state’s TBI-related efforts. Nonetheless, Washington State was able to complete numerous products and trainings with the help of committed participants and collaborations with other community-based organizations. The state has produced products and educational materials through the implementation grant and is currently working on a TBI waiver to address the specialized housing and service needs of persons with TBI that are in or likely to be placed in state hospitals. The state’s grants from HRSA succeeded in leveraging resources with close collaborators, Washington Protection and Advocacy, and the University of Washington’s TBI Model System funded by NIDRR. As of the summer of 2005, new leadership was rebuilding and reinvigorating the Brain Injury Association of Washington. Washington Protection and Advocacy has been and continues to be an active collaborator with community-based TBI organizations in Washington State. It identified three legislative victories in rehabilitation: (1) a 7-year effort involving 125 organizations leading to passage of a mental health parity law; (2) legislative successes in the area of guardianship and the right to vote; and (3) a bill on court accommodations relating to abuse among people with disabilities. As of the summer of 2005, there was interest in Washington State in pursuing development of a TBI trust fund. The state’s TBI advisory board was also working on a Medicaid waiver request.