National Academies Press: OpenBook

Evaluating the HRSA Traumatic Brain Injury Program (2006)

Chapter: Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State

« Previous: Appendix B: Interview Guide Developed by The IOM Committee on Traumatic Brain Injury With the Assistance of Holly Korda, Ph.D.
Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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APPENDIX C
State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TABLE C-1 Characteristics of State Traumatic Brain Injury (TBI) Programs by State, 2005

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Alabama

Alabama Department of Rehabilitation Services

Population: 4,447,100

2,780 hospitalized with TBI

24,351 emergency department (ED) visits for TBI

1,630 TBI disabled

Implementation: 1997, 1998, 1999, 2000

Post-Demonstration: 2001, 2002, 2004

Alabama’s statewide TBI advisory board was established within the Department of Rehabilitation Services in 1986. Its 35 members are appointed by the commissioner of the Department of Rehabilitation Services. Board members consist of 85% agency staff; 15% consumers/family. The board meets quarterly. It engages in advocacy, collaboration, education, planning, and the development and monitoring of the implementation of a statewide TBI action plan.

Alaska

Alaska Department of Health and Social Services

Population: 626,932

459 hospitalized with TBI

2,953 ED visits for TBI

177 TBI disabled

Planning: 2000, 2002

Implementation: 2003, 2004, 2005

Alaska’s statewide TBI advisory board was established within the Division of Mental Health/Developmental Disabilities in 2000. The 20–24 board members consist of 21% agency staff; 50% consumers/family; 29% elected other members. The board has monthly teleconferences and meets quarterly. It engages in advocacy, collaboration, information/referral, planning in addition to overseeing the statewide TBI resource/needs assessment, and eventual development of a statewide TBI action plan.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): Trust fund

State agency: Rehabilitation Services

Year funding source established: 1993

Annual amount(s): $1.2 million

Number served: 678 (information and referral); 1,359 (services) (2001–2002)

Alabama’s trust fund is supported through fines on impaired drivers with driving under the influence (DUI) convictions at $100 per conviction. A portion of revenue is used to support a TBI registry; remaining funds provide direct or purchased services.

Alabama has a trauma registry, TBI registry, and surveillance system. The TBI registry is mandated in statute, and data are reported to Alabama’s Department of Public Health. Consumers are contacted 3 months post injury and provided with information and linkage to resources.

—Alabama’s Interactive Community-Based Model (ICBM) pairs survivors with a care coordinator to address preemployment issues, is a model for other states.

—Alabama enacted graduated drivers’ license legislation in 2001–02.

—Alabama’s expanded ICBM model to children in 2001 has served 518 children through Children’s Rehabilitation Services Division.

—Alabama developed a screening tool, training for domestic violence providers in 2004 (five referrals made to vocational rehabilitation for employment services); implemented TBI screening for children in public schools, materials for educators.

State TBI funding source(s): General revenue

State agencies: Public Health; Mental Health/Developmental Disabilities

Year funding source(s) established: 2001, 2001

Annual amount(s): $106,000, $105,000 (2001–2002)

Number served: Not available, unknown

Funding to Alaska’s Division of Mental Health/Developmental Disabilities serves as match for HRSA grant.

Alaska has a trauma registry and surveillance system funded by the federal Centers for Disease Control and Prevention (CDC).

—Alaska’s statewide TBI advisory board has 50% consumer/family representation in an extremely rural area.

—Alaska is developing a Medicaid rehabilitation services pilot for persons with TBI who have mental illness and functional limitations.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Arizona

Arizona Department of Economic Security

State population: 5,130,632

4,114 hospitalized with TBI

25,229 ED visits for TBI

1,689 TBI disabled

Implementation: 1997, 1998, 1999

Post-Demonstration: 2001

Arizona’s statewide TBI advisory board was established by statute within the Department of Economic Security, Rehabilitation Services Administration in 1992. The 18-member board is appointed by Arizona’s governor. It consists of 11% nonvoting agency staff; 39% consumers/family; 44% others. The board meets at least quarterly and addresses both brain and spinal cord injury issues, and engages in collaboration, education, funding decisions, information/referral, planning, and policy development. The board has produced curricula and resources for personal care assistants, other health care providers, families, teachers, and administrators.

Arkansas

Arkansas Department of Education

State population: 2,673,400

1,263 hospitalized with TBI

15,225 ED visits for TBI

1,019 TBI disabled

Planning: 2001, 2002

Arkansas’ statewide TBI advisory board was established within the University of Arkansas Medical School System in 2001. Of its 24 members, 46% are agency staff; 50% are consumers/family; 4% are other. The advisory board was established jointly by the Arkansas Department of Health and the Partners Program to conduct a statewide TBI resource/needs assessment and develop a statewide TBI action plan. It meets on an as-needed basis.

California

California Department of Mental Health

Planning: 1999, 2001

California’s statewide TBI advisory board was established within the Department of Mental Health in 1999. Its 20 members are appointed by the director of the Department of Mental Health. They consist of 70%

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): Trust fund, Title V

State agencies: Rehabilitation Services, Health

Year funding source(s) established: 1992, 2001

Annual amount(s): $1.8–2.4 million,

Number served: Not available

A trust fund was established by statute, and is supported by surcharges on civil and criminal fines, penalties, forfeitures. The trust fund pays for prevention activities, case support, match against federal funding for vocational rehabilitation services, HRSA grant, staff positions, training, information, and referral. Title V funds augment service coordination, training/education, and prevention activities of service coordinators.

Arizona has a trauma registry and surveillance system.

—Arizona’s HRSA-funded resource cards have been replicated in other states.

—Continuum of care teams in Arizona have built referral protocols, $200,000 which link children and families with resources.

—Arizona’s trust fund provided a one-time appropriation of $3 million to sustain operation of two trauma centers in 2001–02.

 

 

Arkansas has been nationally recognized for instituting a model Olmstead plan,b which provides community long-term care support services for individuals with mental disabilities and brain injuries.

State TBI funding source(s): Trust fund

State agency: Mental Health

Year funding source established: 1988

California has a TBI surveillance system.

—California has caregiver resource centers for caregivers of adults with onset of cognitive and neurological impairments.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

California

State population: 33,871,648

22,413 hospitalized with TBI

108,698 ED visits for TBI

7,274 TBI disabled

 

agency staff; 30% consumers/families. The board meets quarterly and is engaged in advocacy, collaboration, and planning, and will produce the statewide TBI resource/needs assessment and statewide TBI action plan.

Colorado

Colorado Department of Human Services

State population: 4,301,261

3,206 hospitalized with TBI

21,054 ED visits for TBI

1,214 TBI disabled

Planning: 1999

Implementation: 2001, 2002, 2003

Post-Demonstration: 2004

*TBI-specific Medicaid waiver (1995)

Colorado’s statewide TBI advisory board, initially established in 1998 in Colorado’s Department of Human Services, Office of Behavioral Health and Housing, was designated lead coordinating agency for TBI by executive order in 2000. Its 32 members are elected by membership, and consist of 38% agency staff; 43% consumers/family; 19% others. The board meets quarterly and engages in advocacy, collaboration, education, information/referral, planning, and statewide TBI action plan development and implementation.

Connecticut

Connecticut Department of Social Services

Planning: 2003, 2004

*TBI-specific Medicaid waiver (1999)

Connecticut’s statewide TBI advisory board is no longer active.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

Annual amount(s): $1.1 million Number served: 622

A trust fund is supported by 66% of State Penalty Fund revenues from vehicle code violations. Approximately $950,000 was used to provide services to 622 persons in FY 2001; a portion was used for personnel costs and evaluations. Another portion wa used to draw down $620,000 in federal vocational rehabilitation funds, serving 30 persons.

 

—Attempts to repeal California’s safety helmet law in 2001–02 were defeated.

State TBI funding source(s): Trust fund, TBI-specific Medicaid waiver

State agencies: Human Services, Health Care Policy

Year funding source(s) established: 2002, 1995

Annual amount(s): $2.5 million (est.); $5,202,549

Number served: TBD, 284 (2001–2002)

Trust fund legislation imposes $10 and $15 surcharges for certain traffic convictions, requires 5% of funds be used to educate parents, educators, and nonmedical professionals in identifying TBI and assisting persons to seek proper medical care; 65% for services; 30% for research to promote understanding and treatment of TBI.

Colorado has a trauma registry and surveillance system.

—Colorado has a CDC-funded Craig Hospital Data Collection Project.

—Colorado established a TBI trust fund in 2002; created 13-member board.

State TBI funding source(s): General revenue, TBI-specific Medicaid waiver

State agencies: Social Services, Social Services

Year funding source(s) established:

Connecticut has a trauma registry.

—A person-centered plan is required for all Medicaid TBI waiver recipients in Connecticut.

—Connecticut legislature asked Department of

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Connecticut

State population: 3,405,565

1,518 hospitalized with TBI

8,494 ED visits for TBI

568 TBI disabled

 

 

Delaware

Delaware Department of Health and Social Services

State population: 783,600

1,294 hospitalized with TBI

2,731 ED visits for TBI

483 TBI disabled

Planning: 1997, 1998

*TBI-specific Medicaid waiver (2002)

Delaware does not have a distinct statewide TBI advisory board; however, the Governor’s Advisory Council on Aging and Adults with Physical Disabilities formed in 1997 does have a TBI steering committee. The TBI steering committee has 28 members, appointed by the division director, including 30% agency staff; 50% consumers/family; 20% others. It meets as needed when directed by the division director, is engaged in advocacy, collaboration, education, and funding decisions. It prepared a report on Delaware’s statewide TBI resource/needs assessment and developed a coma guide.

District of Columbia

D.C. Department of Health

State population: 572,059

651 hospitalized with TBI

3,268 ED visits for TBI

219 TBI disabled

Planning: 1997, 1998

Implementation: 1999, 2000, 2001

Post-Demonstration: 2002, 2003

The District of Columbia established a TBI advisory board within the D.C. Department of Health in 1997. The advisory board has 25 members appointed by the director of the Department of Health or a bureau chief. They include 50% agency staff; 20% consumers/family; 30% others. The board meets quarterly and engages in advocacy, collaboration, education, and planning. It played a role in development of Healthy People 2010 plan, has provided testimony on registry bill, provides technical assistance in planning and implementing grant activities, and was

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

1985, 1999

Annual amount(s): $2,027,330; $5,034,853

Number served: 2,240 (dup), 158 (2001–2002)

General revenue is used for direct services. Some funds are used for services to class-action lawsuit members. Medicaid TBI waiver has 500 slots; 158 persons had been served as of April 2002.

 

Public Health to study how a TBI registry could be developed and report back.

—Connecticut legislature passed legislation establishing group home pilot for older adults with TBI/acquired brain injury in 2005.

State TBI funding source(s): General revenues, TBI-specific Medicaid waiver

State agencies: Health and Social Services, Health and Social Services

Year funding source(s) established: 2001, 2002

Annual amount(s): $209,000, not yet implemented (2003)

Number served: Unknown, unknown

Delaware has a trauma registry and surveillance system.

—Delaware received Olmstead Systems Change and Assistive Technology grants from the Centers for Medicare and Medicaid Services (CMS) to improve their community long-term care support services for individuals with brain injury and mental illness.

—Disability Commission was created in the state in 2001–02.

The District of Columbia has no TBI-specific state funding at this time.

The District of Columbia has no data collection system in place but is working toward an Intentional and Unintentional Injury registry, which will include TBI. There are also plans for mandatory injury reporting for

—Collaboration with faith communities aims to improve education and care regarding TBI in community settings.

—Collaboration between the TBI advisory board and other stakeholders is reportedly moving D.C. to mandatory injury reporting.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

District of Columbia

involved in an injury reporting bill for 2002.

Florida

Florida Department of Health

State population: 15,982,378

12,719 hospitalized with TBI

65,345 ED visits for TBI

4,373 TBI disabled

Implementation: 1997, 1998, 1999, 2000

Post-Demonstration: 2001, 2003, 2004

*TBI-specific Medicaid waiver (1999)

Florida has an advisory board that addresses needs of both TBI and spinal cord injury that was established by statute in 1985. The board’s 16 members are appointed by the secretary of Florida’s Department of Health. They include 50% consumers/family; 50% others such as physicians, advocacy organizations, etc. The board meets quarterly and is engaged in developing and maintaining standards for designation in acute and sub-acute care, inpatient and outpatient rehabilitation, and transitional living facilities. It also participates in advocacy, collaboration, education, funding, information/referral, and planning; approves product development; recommends legislative changes as needed, and produces an annual performance report.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

 

hospitals, ambulatory clinics, Metropolitan Police Departments, D.C. Fire Department and Emergency Medical Services, and the Office of the Chief Medical Examiner.

 

State TBI funding source(s): Tobacco settlement, Medicaid TBI waiver, trust fund

State agencies: Health, Health, Health

Year funding source(s) established: 2000, 1999, 1988

Annual amount(s): $270,000; $4,300,000; $15,000,000

Number served: Approximately 850; up to 300; 3,167 (case management)/1,183 (other)

A trust fund derives revenue from a percentage of fees levied from traffic-related fines, surcharges for diving and boating under the influence convictions, and temporary license tags. A portion of the proceeds provides matching funds for the state’s Medicaid TBI waiver and supports research, case management and other staffing components for operating the registry, and various contracts.

Florida has a trauma registry and TBI registry. All hospitals, attending physicians, public, private, and social agencies are required to report all new moderate-to-severe brain injuries to the central registry. A case manager is required to contact the individual within 10 working days to determine eligibility for Brain and Spinal Cord Injury Program services, and to assist coordinating all state, federal, and community resources.

—Florida has a Nursing Home Deinstitutionalization and Diversion Project.

—Florida has specialty motorcycle tag in which 25% of funds collected annually go to the Brain and Spinal Cord Injury Program.

—State appropriations increased for TBI-specific Medicaid waiver slots in 2005.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Georgia

Brain and Spinal Injury Trust Fund Commission

State population: 8,186,453

5,581 hospitalized

40,787 ED visits for TBI

2,729 TBI disabled

Planning: 1997

Implementation: 1998, 1999, 2000

Post-Demonstration: 2004

Georgia’s statewide TBI advisory board was created in 1994. It is located within the Brain and Spinal Cord Injury Trust Fund Commission. Its 21 members include 33% agency staff; 33% consumers/family members; 33% others as appointed by the Advisory Board chairperson. The TBI advisory board meets bimonthly and is engaged in collaboration, education, funding decisions, information/referral, and planning.

Hawaii

Hawaii Department of Health

State population: 1,211,537

339 hospitalized with TBI

3,460 ED visits for TBI

232 TBI disabled

Planning: 1999, 2000

Implementation: 2002, 2003, 2004

Hawaii’s statewide TBI advisory board was established by state statute in 1997. Its nine members are appointed by the director of the Department of Health. The board consists of 44% consumers/family members and 56% others (trauma centers, rehabilitation facilities, private providers, maternal and child health representatives, neuropsychiatric institute). The board meets monthly. It engages in advocacy, collaboration, education, planning, and legislative advocacy, and produces the statewide TBI action plan.

Idaho

Idaho Department of Health and Welfare

State population:

Planning: 2000, 2001

Implementation: 2003, 2004, 2005

*TBI-specific

Idaho’s statewide TBI advisory board was established in 2000 and is located within the Department of Health and Welfare/Medicaid. Its 35 members are appointed by the director of that agency. They include representatives from three regional councils: 31% agency staff, 68% consumers/family,

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): Trust fund

State agency: Brain and Spinal Injury Trust Fund Commission

Year funding source established: 1998

Annual amount(s): $2,339,708

Number served: 1,883

The Commission distributes just over $2 million per year to individuals with TBI. Georgia does not have a Medicaid waiver specific to persons with TBI, but 30 slots in its Independent Care Medicaid waiver have been set aside for persons with TBI.

Georgia has a trauma registry, TBI registry, and surveillance system.

SB582 moved operation of the state’s TBI registry from the Division of Rehabilitation Services to the Brain and Spinal Injury Trust Fund Commission.

State TBI funding source(s): Special fund

State agencies: Developmental Disabilities/Health

Year funding source established: 2002

Annual amount: $600,000 (est.)

Number served: Not available

Hawaii passed legislation in 2002 creating a special TBI fund supported by fines from traffic violations. The state is developing criteria to access funds, anticipated for a TBI-specific Medicaid waiver match, registry, case management, and other direct services.

Hawaii does not have systems for collecting TBI-related data. The state hopes to establish a registry with special funds.

—Hawaii has person-centered Planning and Circle of Supports.

—Hawaii passed legislation creating a special TBI fund in 2002.

State TBI funding source(s): TBI-specific Medicaid waiver

State agency: Medicaid

Year funding source established: 1998

Annual amount(s): $546,674

Number served: 23

Idaho has a trauma registry.

—Idaho has been awarded a CMS Real Choices Systems Change Grant and a HRSA Telehealth Grant.

—Idaho passed trauma registry legislation in

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Idaho

1,293,953

599 hospitalized with TBI

7,330 ED visits for TBI

490 TBI disabled

Medicaid waiver (1998)

37% private providers. The TBI advisory board meets quarterly and engages in advocacy, collaboration, education, information/referral, and planning.

Illinois

Illinois Department of Human Services

State population: 12,419,293

7,896 hospitalized with TBI

37,257 ED visits for TBI

2,493 TBI disabled

Planning: 1997, 1998

Implementation: 2000, 2001, 2002

*TBI-specific Medicaid waiver (1999)

Illinois’ statewide TBI advisory board, located within the Hawaii Department of Human Services, was established by statute in 1994. Its 29 members are appointed by the governor. They include 28% agency staff; 28% consumers/family; 44% others. The statute specifies that the TBI advisory board, in addition to including agency staff and consumers/family, is to include neurosurgeons, orthopedic surgeons, and rehabilitation specialists. The board meets quarterly and is engaged in collaboration, education, funding, decision, information, referral, planning, and development of a statewide TBI action plan for both TBI and spinal cord injury survivors.

Indiana

No lead state agency for TBI

State population: 6,080,485

3,702 hospitalized with TBI

25,527 ED visits for TBI

1,708 TBI disabled

Planning: 1999

*TBI-specific Medicaid waiver (2001)

None.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

 

 

2002.

State TBI funding source(s): General revenue, TBI-specific Medicaid waiver

State agencies: Rehabilitation Services, Rehabilitation Services

Year funding source(s) established: 1999, 1999

Annual amount(s): $300,000; $5,823,376

Number served: 1,200; 1,400

Illinois has a trauma registry and a TBI registry. A general statute mandates reporting to the Department of Public Health, but trauma centers are most likely to comply. The Department of Public Health provides data, without identifiers, to the statewide TBI advisory board to use for planning. There is no formal followup with families/consumers.

Medicaid waiver case managers use a holistic approach to helping consumers address their needs.

State TBI funding source(s): TBI-specific Medicaid

State agency: Bureau of Aging and In-Home Services

Year funding source established: 2001

Annual amount(s): $1,523,948

Number served: 150

There is currently no registry for TBI data in Indiana.

The Indiana Protection and Advocacy system is funded with an HRSA federal TBI P&A grant and is in the process of collaborating with state agencies to identify a suitable lead agency.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Iowa

Iowa Department of Public Health

State population: 2,926,324

2,160 hospitalized with TBI

11,019 ED visits for TBI

737 TBI disabled

Planning: 1997

Implementation: 1998, 1999, 2000

Post-Demonstration: 2001, 2002, 2003

*TBI-specific Medicaid waiver (1996)

Iowa’s statewide TBI advisory board was established by statute in 1989. The board is located within the Bureau of Health Promotion and Disability in the Iowa Department of Public Health. Its 20 members are appointed by the governor. The board consists of 50% consumers/family member and 50% professionals, advocates, etc. Agency staff serve as ex officio members. The board meets quarterly and engages in advocacy, collaboration, information and referral, planning, and is responsible for developing and publishing the statewide TBI resource/needs assessment and statewide TBI action plan.

Kansas

Kansas Department of Social and Rehabilitation Services

Planning: 2001, 2002

Implementation: 2003, 2004, 2005

*TBI-specific

Kansas’ statewide TBI advisory board was established in 2001 and is located within the Department of Social and Rehabilitation Services. Its 21 members evolved from the TBI-specific Medicaid waiver steering committee and include 38% agency staff; 29% consumers/family; 33% others. The

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): General revenue, TBI-specific Medicaid waiver

State agencies: Public Health, Public Health

Year funding source(s) established: 1989, 1996

Annual amount(s): $68,885; $2,057,722 (match)

Number served: 1,000 (information and referral), 50 (Peer); 150

$68,885 is used to leverage additional funding.

Iowa has a trauma registry and a TBI registry. The TBI registry is established in statute. Data are reported to Department of Public Health, Bureau of Emergency Medical Services, but followup contact is not conducted.

—As part of HRSA grant activities, Iowa developed a discharge planner model and peer support network to meet information, support, and service linkage needs of families experiencing brain injury—known as the Iowa Brain Injury Resource Network functioning in 18 locations with 22 peer mentor volunteers.

—Brain Injury Association of Iowa and Iowa’s statewide TBI advisory board pushed to get a seat on new Mental Health/Developmental Disabilities Commission, 2002.

—Iowa passed legislation redesigning Department of Mental Health, Developmental Disabilities, and TBI (includes TBI in name and services, 2004.

—Iowa passed legislation designating Department of Public Health as lead state agency for TBI, $6.0 million appropriated to eliminate Medicaid waiver waiting lists, 2005.

State TBI funding source(s): TBI-specific Medicaid waiver, no-fault insurance

State agency: Department Social and Rehabilitation Services

Year funding source established: 1991

Department of Health and Environment is developing a trauma registry.

—Kansas implemented the first TBI-specific Medicaid waiver. It focuses on rehab and independent living and incorporates self-directed supports. Kansas was also

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Kansas

State population: 2,926,324

1,460 hospitalized with TBI

10,932 ED visits for TBI

732 TBI disabled

Medicaid waiver (1991)

TBI advisory board meets at least quarterly and is conducting a statewide TBI resource/needs assessment that will guide its future activities.

Kentucky

Kentucky Cabinet for Health Services/Department of Mental Health and Mental Retardation

State population: 4,041,769

1,857 hospitalized with TBI

18,274 ED visits for TBI

1,223 TBI disabled

Planning: 1999

Implementation: 2003, 2004, 2005

*TBI-specific Medicaid waiver (1999)

Kentucky’s statewide TBI advisory board, located in the Cabinet for Health Services, was established BY statute in 1998 in conjunction with the passage of Kentucky’s trust fund legislation. The board’s nine members include three positions mandated by legislation and six appointed by Kentucky’s governor: 22% agency staff; 33% consumers/Family; 45% others (secretary of cabinet of health services, state epidemiologist, Brain Injury Association of Kentucky, neurosurgeon, neuropsychologist, rehabilitation specialist, social worker, three consumers/family). It has an ad hoc committee to address issues broader than trust fund management and meets as needed but not less frequently than quarterly.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

Annual amount(s): $7.5 million

Number served: 118

—The TBI-specific Medicaid waiver has a rehabilitation focus with individuals typically remaining in service for 3–5 years, after which they may move to a different Medicaid waiver if they need lifelong support.

—No-fault insurance pays 85% of lost wages up to $900/month for 12 months; at least $4,500 medical and $4,500 rehab costs; $25/day for 1 year in substitution benefits; $2,000 funeral costs; AND $900/month survivor benefits. Law covers pedestrians hit by a car as well as persons injured in a car.

 

one of the first states to develop a teacher training/technical assistance project using a mini-team approach—the Neurological Disabilities Support Project.

—$2.5 million additional dollars were appropriated in Kansas to increase Medicaid match in 2002.

State TBI funding source(s): Trust fund, TBI-specific Medicaid waiver

State agencies: Mental Health/Mental Retardation; Mental Health/Mental Retardation

Year funding source(s) established: 1998, 1999

Annual amount(s): $2.2 million

Number served: 500, 95 of 110

A trust fund was established by statute and is funded with surcharges onfines for moving violations, DUI violations, overweight trucks, etc. A trust fund provides $125,000 for the registry, $2.75 million for direct services, and $60,000 for administrative costs. Fines/revenue were increased in 2004.

Kentucky has a TBI registry established in statute. The TBI registry is not population based, reporting is not mandatory, and there is no followup.

—A legislative task force was established in Kentucky 2002 to address need for long-term residential care, decriminalization of brain injury, and long-term case management. Legislation expanded trust fund capabilities by including court costs.

—Legislation passed adding TBI as eligibility category for Department of Mental Health & Mental Retardation and Developmental Disabilities services, 2005.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Louisiana

Louisiana Department of Social Services/Louisiana Rehabilitation Services

State population: 4,468,976

2,816 hospitalized with TBI

26,214 ED visits for TBI

965 TBI disabled

No Federal TBI Program grants received.

In Louisiana, an advisory board within the Department of Rehabilitation Services serves as the trust fund board for TBI and spinal cord injury. Its 13 members are appointed by the governor. They include 8% agency staff; 30% consumers/family; 62% mandatory others (director of Rehabilitation Services; executive director of the Brain Injury Association of Louisiana; the executive director of the Spinal Cord Injury Association; nominated psychologist; survivor of TBI and spinal cord injury; family member of each; presidents of medical society, hospital association, dental association, House, Senate). The board meets quarterly.

Maine

Maine Department of Human Services

State population: 1,274,923

519 hospitalized with TBI

4,534 ED visits for TBI

303 TBI disabled

Planning: 2003, 2004

Implementation: 2005

Maine’s statewide TBI advisory board, located within the Department of Human Services, was established in April 2002. The 25-member board was formed by joint invitation of the department director and the executive director of the Brain Injury Association of Maine. Activities of this new group focus on establishing a lead state agency for TBI; creating a mission statement, bylaws, and common definition for brain injury; and positioning itself to obtain a federal TBI Program grant from HRSA. The board meets bimonthly.

Maryland

Maryland Department of Health and Mental Hygiene

State population: 5,296,486

4,614 hospitalized with TBI

15,383 ED visits for TBI

Planning: 1998

Implementation: 1999, 2000, 2001

Post-Demonstration: 2003, 2004

*TBI-specific Medicaid waiver (2003)

Maryland’s statewide TBI advisory board, located within the Department of Health and Mental Hygiene, was established in 1998. State legislation passed in 2005 established the board statutorily. Target membership is 31 members. In 2003, Maryland reported 18 voting and 3 ex officio members appointed by the Mental Hygiene Administration. The board included 46% agency staff; 18% consumers/family; 36% others. The board meets six times per year. It is responsible for Maryland’s statewide TBI action plan,

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): Trust fund

State agency: Rehabilitation Services

Year funding source established: 1993

Annual amount(s): $1.3 million

Number served: 259

A trust fund was established by statute in 1993. It is funded by fees attached to fines for speeding, reckless operation, and DUI convictions. Trust fund spent $2.7 million in 2001–2002 because of a prior surplus.

Louisiana has a trauma registry that is not population based, a TBI registry, and a surveillance system. The TBI registry is established in statute. Reporting is mandatory but does not include followup contact.

Louisiana’s governor issued an executive order directing state agencies to develop short- and long-term plans to provide community-based services to individuals with disabilities and elderly who need long-term care, 2004.

Maine’s Medicaid state plan specifically targets persons with TBI in its rehab services package. Persons with TBI also benefit from a higher reimbursement rate for nursing facility services. Contingent upon eligibility criteria, they may also access Medicaid adults with developmental disabilities waivers. The number of persons benefiting from these services or expenditures is not available.

 

Maine’s Medicaid state plan rehabilitation package.

State TBI funding source(s): General revenues, TBI-specific Medicaid waiver

State agencies: Mental Hygiene, Mental Hygiene

Year funding source(s) established: 1996, 2002

Annual amount(s): $1.2 million

Number served: 14

The TBI-specific Medicaid waiver was implemented in 2003, when results were reported, so there is no

Maryland has a trauma registry, TBI registry, and surveillance system. TBI registry is established in statute. Reporting to the Office of Injury Prevention, Department of Health and Mental Hygiene is

—Maryland’s “all-payer system” established equitable rates for Maryland hospitals and ensures that individuals are able to obtain acute-care services regardless of income or insurance benefits. It is the only state in the United States with this system.

—Maryland developed a TBI pilot case

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Maryland

1,856 TBI disabled

 

and is involved in collaboration, education, information/referral, and planning.

Massachusetts

Massachusetts Executive Office of Health and Human Services/Massachusetts Rehabilitation Commission

State population: 6,349,097

2,835 hospitalized with TBI

10,200 ED visits for TBI

683 TBI disabled

Implementation: 2000, 2001, 2002

*TBI-specific Medicaid waiver (2002)

Massachusetts’ statewide TBI advisory board, established in 1985, is located within the Rehabilitation Commission. Its 18 members are nominated by the membership and appointed by the chair. They include 22% agency staff; 65% consumers/family; 11% others. The board meets quarterly and engages in advocacy, collaboration, education, funding decisions, and planning.

Michigan

Michigan Department of Community Health

State population: 9,938,444

5,893 hospitalized with TBI

34,054 ED visits for TBI

2,279 TBI disabled

Planning: 1998

Implementation: 2001, 2002, 2003

Post-Demonstration: 2004

Michigan’s statewide TBI advisory board, located in the Department of Community Health, was established in 1999. Its 54 members are appointed by the lead state agency for TBI. They include 33% agency staff; 13% consumers/family; 54% others. The board has five committees that meet monthly, and the full board meets twice per year. The board has produced brochures for consumers and professionals, and a resource guide, and a website.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

history yet.

mandatory but does not include followup contact.

management project within the mental health system.

—Maryland awarded an Independence Plus waiverc to assist individuals with disabilities to reside in their own homes, 2004.

State TBI funding source(s): General revenues, trust funds (2), TBI-specific Medicaid waiver

State agencies: Rehabilitation Commission, Rehabilitation Commission, Rehabilitation Commission

Year funding source(s) established: 1985, 1991, 2002

Annual amount(s): $6.1 million, $750,000

Number served: 520; 720 (information and referral), 40 (services); 250 slots

Massachusetts has a trauma registry.

—Massachusetts was one of the first states to develop a state TBI program using general revenue funds to pay for a range of services.

—Massachusetts worked with three culturally diverse communities to improve outreach and referral to state services.

State TBI funding source(s): General revenues, no-fault insurance

State agencies: Community Health, Office of Financial and Insurance Services

Year funding source(s) established: 2000, 1972

Annual amount(s): $1.0 million

Number served: Not available

$100,000 in general revenue is matched for the HRSA available for services to individuals. In Michigan, persons with Diagnostic and Statistical Manual–IV diagnosis

Michigan has a trauma registry; legislation authorizing it sunsetted in 1995. The state’s HRSA grant focuses on developing an integrated data collection system. Analysis of data from Medicaid, hospital discharge, ED visits, vital statistics, and

Michigan’s self-determination movement and Medicaid choice waiver.d

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Michigan continued

Minnesota

Minnesota Department of Human Services

State population: 4,919,479

2,796 hospitalized with TBI

15,467 ED visits for TBI

1,470 TBI disabled

Implementation: 1997, 1998, 1999

Post-Demonstration: 2002, 2003

*TBI-specific Medicaid waiver (1992)

Minnesota’s statewide TBI advisory board, established in 1990 by statute, is located within the Department of Human Services. The board must have no fewer than 10 and no more than 30 members appointed by the commissioner of the Department of Human Services. It includes 50% consumers/family; 50% providers or advocates. State staff are ex officio. The board meets bimonthly, engages in advocacy, collaboration, education, funding decisions, information/referral, and planning.

Mississippi

Mississippi Department of Rehabilitation Services

State population: 2,844,658

Planning: 1997

*TBI/spinal cord injury (SCI) Medicaid waiver (2001)

Mississippi has an advisory board that serves both TBI and SCI. It was established by statute in 1996 and is located within Mississippi’s Department of Rehabilitative Services. Its 10 members are appointed by the director of Department of Rehabilitation Services. The board consists of 60% consumers/family; 40% others. The board meets bimonthly and is engaged

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

are eligible for mental health/developmental disabilities services. HRSA-funded data project shows 80,000 persons with TBI diagnosis who are receiving Medicaid-funded services. No-fault insurance pays all medical costs up to 85% of an individual’s income to a ceiling of $4,027/month, $20/day replacement services (e.g., yard work), and $1 million property maximum.

insurance companies is being conducted to determine TBI incidence and costs since 1997. 23 hospitals are participating in collection of ED statistics.

 

State TBI funding source(s): Trust fund, TBI-specific Medicaid waiver

State agencies: Health, Human Services

Year funding source(s) established: 1991, 1992

Annual amount(s): $350,000; $17,017,589

Number served: Not available, 495

Persons whose driver’s license has been revoked must pay a surcharge to the revocation fee. As of July 2003, surcharge was increased from $145 to $380. 5% is credited to a TBI/spinal cord injury account to be disbursed as follows: 35% for contracted services to help persons with TBI access supports, and 65% to maintain the registry.

Minnesota has a trauma registry, TBI registry, and surveillance system. The TBI registry is established in statute, requires mandatory reporting, and includes followup contact at 3 months post injury.

—In 1993, state hospitals for the mentally ill in Minnesota began screening new admissions for TBI. Personal care services under the Medicaid state plan include cognitive and behavioral supports.

—Crisis support became available as a rehabilitation option to persons with TBI in the state in 2002.

State TBI funding source(s): Trust fund, TBI/SCI Medicaid waiver

State agencies: Rehabilitation Services, Rehabilitation Services

Year established: 1996, 2001

Annual amount(s): $1.3–$2.0 million, unavailable

Number served: 436; 400 slots/41 served

Mississippi has a trauma registry, TBI registry, and surveillance system. The TBI registry is mandated by statute. Data are reported to the Department of

 

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Mississippi

1,533 hospitalized with TBI

16,432 ED visits for TBI

1,100 TBI disabled

 

in advocacy, collaboration, education, funding decisions, and planning, and monitors the trust fund.

Missouri

Missouri Department of Health and Senior Services

State population: 5,595,211

4,575 hospitalized with TBI

28,797 ED visits for TBI

1,129 TBI disabled

Implementation: 1997, 1998, 1999, 2000

Post-Demonstration: 2001, 2002, 2004

Missouri’s statewide TBI advisory board was initially established by executive order in 1985 and, statute in 1986 and is housed in the Office of Administration. In 2005, it was transferred by executive order to the Missouri Department of Health and Senior Services. The board’s members are appointed: 21 members by the governor and 4 by the state legislature. They include 32% agency staff; 27% consumers/family; 41% others. The board meets bimonthly and has initiated the registry, funding for services, and a trauma center; sponsors conferences; and functions as an internal advocate for several agencies and departments within the state. It has produced reports, training modules, and educational booklets; maintains a web page; and has developed a playground safety program.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

A trust fund was established by state statute and is supported by a $25 surcharge on DUI violations and a $4 surcharge on other moving vehicle violations. It funds prevention, the registry, and direct services.

Health, which contracts with the Department of Rehabilitation Services to maintain the registry. Resource information sent to families; no further followup.

 

State TBI funding source(s): General revenue, Trust fund

State agencies: Health and Senior Services, Health and Senior Services

Year funding source(s) established: General revenue funding for the TBI advisory board, 1985; general revenue for state-contracted services and for Missouri’s Rehabilitation Center, FY 1986; Trust fund, 2002

Annual amount(s): $106,000 (planning/policy/council prior to 2000 was general revenue, shifted to trust fund in 2001); $41,750 (prevention); $1,724,298 (general revenue direct contractual services/service coordination); $10,907,435 Missouri (rehabilitation center, but not broken out for specific TBI services)

Number served: 443 (rehabilitation), not available

Missouri has a trauma registry, TBI registry, and surveillance system. The TBI registry was established by statute (1986). Reporting of surveillance data to the Missouri Head Injury Advisory Council is required, but there is not a followup contact system. Data are used for injury control and prevention program as well.

—Division of Special Education developed four training modules for educators. Missouri has provided training to case managers on person-centered planning.

—Trust fund legislation was passed in 2002.

—Developed data linkages project across all state agencies that has continued through Office of Administration; early information and referral protocols with trauma centers/rehab centers; core competences for direct-care providers and service coordinators that are being adopted across special health care needs programs.

—Legislation repealed comprehensive day rehab and other Medicaid optional services for adults, 2005

—Head Injury Program (GR) was cut by ~$800,000, 2005 for FY 2006.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Montana

Montana Department of Public Health and Human Services

State population: 902,195

452 hospitalized with TBI

5,578 ED visits for TBI

373 TBI disabled

Planning: 2001, 2002

Implementation: 2003, 2004, 2005

Montana’s statewide TBI advisory board, located within the Department of Public Health and Human Services, was established in 2001. Its 14 members are appointed by the Department of Public Health and Human Services. They include 21% agency staff; 29% consumers/family; 50% others. There is a broad-based interagency task force that addresses a wide range of issues and reports to the official TBI advisory board, which meets three times each year.

Nebraska

Nebraska Department of Education

State population: 1,711,263

824 hospitalized with TBI

6,799 ED visits for TBI

339 TBI disabled

Planning: 2000, 2001

Implementation: 2002, 2003, 2004

*TBI-specific Medicaid waiver (2002)

Nebraska’s statewide TBI advisory board, located within the Department of Education, was established by statute in 1999. Its 15 members are appointed by the commissioner of education. They include 20% agency staff; 47% consumers/family; 33% others. The board meets quarterly and is engaged in collaboration and planning activities. It also produces a report to the state legislature.

Nevada

Nevada Office of Community-Based Services

State population: 1,998,257

1,342 hospitalized with TBI

11,652 ED visits

780 TBI disabled

Planning: 1997, 2005

Nevada’s statewide TBI advisory board was created in 1993, but it had difficulty continuing to meet on a formal basis. Former board members continue to collaborate informally and have provided input to a 10-year strategic plan that includes persons with TBI.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): Medicaid Home and Community-based Waiver Program

State agency: Public Health

Year funding source established: Unknown

Annual amount(s): Not available

Number served: 97

Montana does not have a TBI-specific Medicaid waiver, but special services in the state’s Medicaid Home and Community-based waiver for the elderly and disabled may be used by persons with TBI.

 

Montana’s ability to piggyback on an existing Medicaid home and community-based waiver program is cost-effective. Post-acute rehabilitation services are reported to be exceptional.

State TBI funding source(s): TBI-specific Medicaid waiver

State agency: Not available

Year funding source established: 2002

Annual amount(s): Not available

Number served: 35

TBI-specific Medicaid waiver is a model waiver focusing on adult residential/supp living, ages 18–64.

Nebraska has a trauma registry and TBI/SCI registry that is population based and established in statute. Data are reported to the Nebraska Department of Public Health and Human services but the registry does not include followup contact.

Nebraska’s registry was reauthorized by the state legislature in 2002.

State TBI funding source(s): General revenus, tobacco settlement

State agencies: Community-Based Services, Community Enrichment

Year funding source(s) established: 1992, 2000

Annual amount(s): $300,000; $5.0 million

Number served: 10, Not available

General revenue used for direct services. Tobacco settlement used to

Nevada has a trauma registry.

—Nevada’s incorporation of alternative medicine into rehabilitation services.

—In 2002, Nevada received increases in personal care assistance, independent living service,s and equipment loans and defeated efforts to eliminate helmet law.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Nevada continued

New Hampshire

New Hampshire Department of Health and Human Services/Division of Developmental Services

State population: 1,235,786

466 hospitalized with TBI

3,980 ED visits for TBI

240 TBI disabled

Planning: 1997, 1998

Implementation: 2000, 2001, 2002

Post-Demonstration: 2003, 2004

*TBI-specific Medicaid waiver (1993)

New Hampshire has an advisory board that addresses TBI and spinal cord injury that was created by statute in 1998. The board’s composition is mandated in statute. The board includes 11 members designated by the governor, heads of the legislature, and department heads. It includes 11% agency staff; 33% consumers/family; 56% others (legislators, Brain Injury Association appointees, injury prevention center representative). The board meets quarterly and engages in advocacy, education, and planning.

New Jersey

New Jersey Department of Human Services

State population: 8,414,350

4,630 hospitalized with TBI

Implementation: 1999, 2000, 2001

Post-Demonstration: 2002, 2003, 2004

*TBI-specific Medicaid waiver (1993)

New Jersey’s TBI advisory board, located within the Department of Human Services, was established in 1998 by executive order and by statute. The board’s 26 members include 31% agency staff; 27% consumers/family; 42% others. The board meets quarterly and actively engages in advocacy, collaboration, education, and planning. New Jersey’s Federal TBI Program grant from HRSA focused on children’s

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

build a rehabilitation center at a college with therapist training programs.

 

State TBI funding source(s): General revenue, general revenue, general revenue, TBI-specific Medicaid waiver

State agencies: Brain Injury Association of New Hampshire, Developmental Services, Developmental Services, Developmental Services, Medicaid

Year funding source(s) established: 1993, 1993, 2002, 1993

Annual amount(s): $50,000; $50,000; $200,000; $5,657,499

Number served: Not available; 720; not avalable; 85

The Brain Injury Association of New Hampshire contract funds support New Hampshire’s TBI registry. Other general revenue supports information and referral, case management, and some direct services. New Hampshire’s Division of Developmental Services provides match for Medicaid state plan services. Medicaid TBI waiver spending authorized at $7.6 million; unused funds support services for non-waiver-covered persons.

New Hampshire has a TBI registry. The TBI registry is population based and is established in statute. Reporting to the TBI registry is mandatory; data are reported to New Hampshire Hospital Association. A followup/outreach mechanism, which begins with initial contact in the acute hospital setting, is being piloted.

—Focus of HRSA Implementation Grant in New Hampshire is to build neurobehavioral service capacity.

—Additional general revenues was received in 2002 in New Hampshire and will be used to establish a statewide case management system. Any excess will be used for prevention, respite, home modifications, and family support.

State TBI funding source(s): Trust fund, TBI-specific Medicaid waiver

State agencies: Human Services, Human Services

Year funding source(s) established: 2002, 1993

Annual amount(s): $3.4 million; $14,557,615

Number served: Not available, 250

New Jersey has a trauma registry and a surveillance system.

—New Jersey offers cash and counseling; Medicaid buy-in for employed individuals; and mentoring program for persons with TBI (HRSA grant).

—New Jersey passed legislation establishing Brain Injury Research

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

New Jersey

18,953 ED visits for TBI

1,268 TBI disabled

 

sports injuries, and developing guides for public school staff.

New Mexico

New Mexico Department of Health

State population: 1,819,046

954 hospitalized with TBI

9,233 ED visits for TBI

618 TBI disabled

Implementation: 2001, 2002, 2003

New Mexico’s TBI advisory board, located within the state’s Developmental Disabilities Planning Council, was established by statute in 1997. Its 18 members are appointed by the governor. They include 17% agency staff; 40% consumers/family; 43% others. The board meets quarterly and is engaged in a broad range of activities, including advising the Department of Health on funding recommendations. The board anticipates forming a subcommittee to suggest a drug formulary.

New York

New York Department of Health

State population: 18,976,457

12,840 hospitalized with TBI

51,185 ED visits

5,159 TBI disabled

Implementation: 1997, 1998, 1999, 2000

Post-Demonstration: 2001, 2002, 2004

*TBI-specific Medicaid waiver (1995)

New York’s TBI advisory board, located in the Department of Health, was established by statute in 1994. The statute mandates the participation of representatives from state agencies and others appointed by the governor or leaders of the New York legislature. The board’s 19 members include 42% agency staff; 31% consumers/family; 26% others. The board meets quarterly and engages in advocacy, collaboration, education, planning, and analysis.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

A trust fund was established by statute and is funded by surcharges on motor vehicle registrations.

 

Act, making New Jersey the first state with dedicated funding for research on TBI, 2004.

—New Jersey developed a TBI family and peer support program involving clergy and the faith community, as well as families and consumers.

State TBI funding source(s): Trust fund

State agency: Health

Year funding source(s) established: 1997

Annual amount(s): $2.0 million

Number served: 572

A trust fund was established by statute by a combination of $600,000 in general revenue and $5 from each traffic violation fee. $100,000 has been used for HRSA grant match; remaining funds have been allocated to direct services.

New Mexico has a trauma registry.

—Crisis services and life skills training are available statewide in New Mexico.

—New Mexico’s governor signed legislation authorizing a Medicaid home and community-based waiver that could be used for individuals with TBI, 2005.

State TBI funding source(s): General revenue, general revenue, TBI-specific Medicaid waiver

State agencies: Various, Health, Medicaid

Year funding source(s) established: 1995, 1995, 1995

Annual amount(s): $2.0 million, $4.0 million, Not available

Number served: Not available; 750; 1,000

The $2.0 million appropriation supports various planning and policy activities. The $4.0 million pays for rent subsidies and housing support to waiver recipients.

New York has a trauma registry and a surveillance system.

—New York’s TBI program provides rent subsidies and housing supports to waiver participants. A Neurobehavioral Resource Project trains staff; and service providers; consults on crises; and provides technical and clinical support to TBI providers.

—Participated in CMS pilot of participant evaluation survey for individuals served by Medicaid TBI waiver.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

North Carolina

North Carolina Division of Mental Health, Developmental Disabilities, and Substance Abuse Services

State population: 8,049,313

4,485 hospitalized with TBI

36,883 ED visits for TBI

2,468 TBI disabled

Implementation: 1997, 1998, 1999

Post-Demonstration: 2001

North Carolina’s TBI advisory board evolved from a task force established in 1995 to write North Carolina’s statewide TBI action plan. The current advisory board has been in effect since 1998 but is not mandated. It has 30 members invited by a TBI specialist. It includes 43% agency staff; 15% consumers/family; 42% others. The board uses subcommittees and meets monthly.

North Dakota

North Dakota Department of Human Services

State population: 642,200

267 hospitalized with TBI

2,281 ED visits for TBI

153 TBI disabled

Planning: 2003, 2004

*TBI-specific Medicaid waiver (1994)

North Dakota’s TBI advisory board, located within the Department of Human Services, was established in 2001. Its 20 members are appointed by the director of the Division of Aging. They include 50% agency staff; 10% consumer/family; 40% others. The board meets quarterly and is involved in advocacy, planning, collaboration, education, and funding activities.

Ohio

Ohio Rehabilitation Services Commission

Implementation: 1998, 1999, 2000

Post-Demonstration: 2002, 2003, 2004

Ohio’s TBI advisory board, located in the Ohio Rehabilitation Services Commission, was established by state statute in 1990. The 1990 statute mandates the involvement on the TBI advisory board of agency directors/designees and others appointed

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): General revenue, general revenue

State agency: Mental Health/Developmental Disabilities/Substance Abuse Services; Vocational Rehabilitation Independent Living

Year funding source(s) established: 1993, 1999

Annual amount(s): $1,596,702; $251,627

Number served: 1,519,446

$400,000 will be appropriated as a Medicaid TBI waiver match. Wide range of consumer supports provided case by case. The Division of Vocational Rehabilitation Services supports two positions and case service for independent living.

North Carolina has a trauma registry which captures information on persons treated at 21 of its 115 hospitals. North Carolina attempted to establish a TBI registry, but efforts were ineffective due to no mandatory requirement to report.

—North Carolina’s inclusion of TBI within developmental disabilities definition enables people of all ages with TBI to use developmental disabilities agency service coordination and broad developmental disabilities funding.

—North Carolina’s General Assembly authorized a Medicaid TBI waiver and a bike helmet law for ages 0–16.

State TBI funding source(s): TBI-specific Medicaid waiver

State agency: Human Services

Year funding source established: 1994

Annual amount(s): $580,982

Number served: 32 (37 slots)

Persons with TBI in North Dakota may also be served under programs designed for those not eligible for Medicaid waiver but who need personal and homemaker services through Aging Services.

North Dakota has a trauma registry.

 

State TBI funding source(s): General revenue

State agency: Rehabilitation Services Commission

Year funding source established: 1990

Ohio has a trauma registry and is a Model Systems site.

—Ohio has collaborated with the Ohio Legal Rights on housing initiative and on a Medicaid guide. It is contracting with a development specialist to

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Ohio

State population: 11,353,140

7,607 hospitalized with TBI

38,624 ED visits for TBI

2,585 TBI disabled

 

by the executive director of Ohio’s Rehabilitation Services Commission. The board’s 21 members include 47% agency staff; 33% consumers/family; 25% others. The board meets six times per year and engages in a wide range of activities; it has produced guides and an incidence report.

Oklahoma

Oklahoma Department of Health

State population: 3,450,654

2,560 hospitalized with TBI

18,398 ED visits for TBI

817 TBI disabled

Planning: 1997, 1998

Implementation: 1999, 2000, 2001

Post-Demonstration: 2003, 2004

Oklahoma’s TBI advisory board was established in 1991 and was appointed by the governor. A revised TBI advisory board was established in 1997 in the Oklahoma Department of Health to better address Federal TBI Program mandates. The board has 26 members of whom 68% are agency staff and 32% are consumers/family. The board engages in activities that include reviewing and approving grant project products and curricula. The full board meets quarterly; task forces meet six to eight times a year.

Oregon

Oregon Department of Education

State population: 3,421,399

2,828 hospitalized with TBI

17,964 ED visits for TBI

1,202 TBI disabled

Planning: 1997

Implementation: 1998, 1999, 2000

Post-Demonstration: 2001, 2002, 2004

Oregon’s TBI advisory board was established in 1997 with the state’s federal TBI Program Planning grant from HRSA. The TBI advisory board’s 42 members are invited by the state Department of Education or nominated by their agencies. They include 21% agency staff; 38% consumers/family; 64% others. The board’s executive committee has met often. The board focuses on federal TBI Program grants from HRSA and sustainability. The full board meets as needed.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

Annual amount(s): $346,000

Number served: Not available

General revenue provides funding for planning, prevention, research, services, and development. Persons with TBI who meet eligibility requirements may access one of six Medicaid waivers (three nursing facility level of care and three intermediate level of care facilities for people with mental retardation).

 

educate public policy makers.

—Medicaid waivers may be used for individuals with TBI.

—The Ohio legislature awarded an additional $50,000 for TBI-related services in tight budget times, 2002.

Oklahoma is in the process of developing a Medicaid waiver. Individuals who meet eligibility criteria can currently access one of four other waivers.

Oklahoma has a trauma registry and a surveillance system.

—Oklahoma has improved discharge planning practices.

—Oklahoma has increased funding for a trauma system approved by the legislature in 2002.

—Oklahoma passed legislation establishing Consumer-Directed Personal Assistance and Support Services for adults with disabilities, 2004.

Adults with TBI in Oregon can access the Medicaid aging and disabled waiver if they meet eligibility requirements.

Oregon has a trauma registry.

Oregon’s TBI Consult Team funded by the Department of Education provides support to local educators; the Oregon Brain Injury Research Network provides information. An executive order created the governor’s TBI task force and recommended a TBI trust fund, 2002.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Pennsylvania

Pennsylvania Department of Health

State population: 12,281,054

8,550 hospitalized with TBI

41,282 ED visits for TBI

2,762 TBI disabled

Planning: 2001, 2002

Implementation: 2003, 2004, 2005

*TBI-specific Medicaid waiver (2002)

Pennsylvania’s TBI advisory board, located within the Department of Health, was established in 2001. Its 18 members are appointed by the secretary of the Department of Health. They include 44% agency staff; 34% consumers/family; 22% others. The board meets monthly, and its current focus is on statewide TBI resource/needs assessment and developing a statewide TBI action plan.

Rhode Island

Rhode Island Department of Human Services

State population: 1,048,319

531 hospitalized with TBI

2,500 ED visits for TBI

214 TBI disabled

Planning: 1999, 2000

Implementation: 2002, 2003, 2004

Rhode Island’s TBI advisory board was established by state statute in 1986. Its 13 members are appointed by the governor and include 31% agency staff; 31% consumers/family; 38% others. The board meets monthly and engages in advocacy, education, and planning, and makes funding recommendations to the governor.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): Trust fund, TBI-specific Medicaid waiver

State agencies: Health, Public Welfare, Insurance

Year funding source(s) established: 1985, 2002, 1980s

Annual amount(s): $3.0 million; not available; not applicable

Number served: 175; 50 slots; unknown

A trust fund was established by statute It is funded by DUI and moving violations and provides services and coordination to adults with incomes at or below 300% of the federal poverty level. A catastrophic loss fund was available 1984–1989 to auto accident victims, but it is almost exhausted as claimants have hit the $1.0 million lifetime limit.

Pennsylvania has a trauma registry and surveillance system.

 

State TBI funding source(s): General revenue

State agency: Human Services

Year funding source established: 1986

Annual amount(s): $2,000

Number served: Not available

The Department of Human Services provides funding from general revenue to the Brain Injury Association of Rhode Island to provide informationand referrals. Rhode Island does not have a TBI-specific Medicaid waiver, but more than 700 persons with TBI access services from five other Medicaid waivers.

Rhode Island has a TBI registry, mandated in statute and population based. Data are reported to the Department of Health, which sends out resource information to individuals with brain injury and families within 3–6 months.

Rhode Island’s new habilitation waiver is expected to serve as many as 25 persons with TBI.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

South Carolina

South Carolina Department of Disabilities and Special Needs

State population: 4,012,012

2,203 hospitalized with TBI

20,551 ED visits for TBI

908 TBI disabled

Planning: 1997, 1998

Implementation: 2000, 2001, 2002

Post-Demonstration: 2004

*TBI-specific head and spinal cord injury (HASC) Medicaid waiver (1995)e

South Carolina’s TBI advisory board was established in 1997. Initial membership on the board was by invitation of the South Carolina Department of Disabilities and Special Needs, the lead state agency for TBI. The TBI advisory board is becoming an independent entity, and new members are selected by the board. Of its 40 members, 35% are agency staff; 38% are consumers/family members; 27% are others. The board meets quarterly and engages in range of activities, including statewide TBI action plan development, data collection and reporting on comprehensive rehabilitation, employment and residential services.

South Dakota

State population: 754,844

341 hospitalized with TBI

3,845 ED visits for TBI

257 TBI disabled

No Federal TBI Program grants received

Profile not available

Tennessee

Tennessee Department of Health

State population: 5,689,283

3,575 hospitalized with TBI

Implementation: 2000, 2001, 2002

Post-Demonstration: 2003, 2004

Tennessee’s TBI advisory board, located within the Department of Health, was established by state statute in 1993. Its nine members are appointed by the governor. The board consists of 33% agency staff; 55% consumers/family members; 11% others. The board meets quarterly and engages in advocacy, collaboration, funding decisions, planning activities, and developing program policies.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): General revenue, TBI-specific Medicaid waiver

State agencies: Department of Disabilities and Special Needs, Medicaid

Year funding source(s) established: 1994, 1995

Annual amount(s): $6.0 million, not available

Number served: 600, 50

South Carolina has a surveillance system and a CDC-funded followup project that may lead to development of a TBI registry.

South Carolina has an individuals rehabilitation support project to prepare persons for return to work for greater independence.

General revenue in the state includes appropriations, Medicaid match for TBI/SCI waiver, and money collected from a surcharge on DUI fines. The Medicaid waiver has 440 slots, most occupied by individuals with spinal cord injury. Approximately 100 persons with TBI use the state’s Medicaid mental retardation and developmental disabilities waiver.

 

State TBI funding source(s): General revenue, trust fund

State agencies: Vocational Rehabilitation, Health

Year funding source(s) established: 1998, 1993

Annual amount(s): $108,000; $750,000

Number served: 40; 2,603

Tennessee has a trauma registry and a TBI registry. The TBI registry was established by statute and is population based. Reporting to the Department of Health is

—Beginning in 1999, the Tennessee TBI program developed distance learning to train TBI providers. To date, 754 professionals have attended sessions.

—The Tennessee legislature defeated repeal of the helmet law in 2002.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Tennessee

27,860 ED visits for TBI

1,864 TBI disabled

 

Texas

Texas Department of Health and Human Services

State population: 20,851,820

14,229 hospitalized with TBI

85,593 ED visits for TBI

5,728 TBI disabled

Planning: 1997, 1998

Implementation: 2000, 2001, 2002

Post-Demonstration: 2004

Texas’ TBI advisory board, located in the Texas Health and Human Services Commission, was established in 1997. Its 21 members are appointed by the commission and include 38% agency staff; 38% consumers/family; 24% others. The board meets quarterly and addresses long-term services and systems coordination, engages in advocacy, collaboration, education, information and referral, and planning. It has produced concussion cards and “First Steps” brochures.

Utah

Utah Department of Human Services

State population: 2,233,169

1,410 hospitalized with TBI

10,065 ED visits for TBI

549 TBI disabled

Planning: 2001, 2002

Implementation: 2003, 2004

*TBI-specific Medicaid waiver (1996)

Utah’s TBI advisory board, located within the Department of Health, was established in 2001. Its 28 members are appointed by the bureau director. The board composition is as follows: 35% agency staff, 22% consumers/family; 22% health care providers; 21% advocacy or research groups. The board meets quarterly. It has focused on statewide TBI resource/needs assessment and statewide TBI action plan development.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

General revenue supports TBI at the Tennessee Rehabilitation Center, which also receives $98,000 from trust fund. Remaining trust funds are used for planning, registry, services, information, and referral. A trust fund was established by legislation and is supported by fines on motor vehicle violations.

mandatory. Follow up occurs within 6 months post injury with information brochure.

—Tennessee increased fines/revenue for trust fund, 2004.

State TBI funding source(s): Trust fund

State agency: Rehabilitation Commission

Year funding source established: 1991

Annual amount(s): $10.0–10.5 million

Number served: 450

A trust fund, established by statute, serves TBI and spinal cord injury and pays for eligible inpatient medical rehabilitation, outpatient rehabilitation-focused, post-acute cognitive. The trust fund is payer of last resort, and recipients must be Rancho IV or higher and at least 16 years old upon completion of rehabilitation.

Texas has a trauma registry, surveillance system, and TBI registry. The TBI registry was established by statute and is population based. Reporting to the Department of Health, Injury Epidemiology and the surveillance program is mandatory. The registry does not include followup contact.

Eight legislative issues related to TBI were addressed by Texas in 2002. Most of them involved including or directing services or amending laws to benefit TBI survivorship.

State TBI funding source(s): TBI-specific Medicaid waiver

State agency: Health Services

Year funding source established: 1996

Annual amount(s): $1,391,570

Number served: 68

Children receive services through Utah’s mental retardation/developmental disabilities waiver and the public school system.

Utah has a trauma registry and a surveillance system.

Utah’s governor signed legislation that adds/defines acquired brain injury as an eligible diagnosis for the state’s Division of People with Disabilities.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Vermont

Vermont Division of Vocational Rehabilitation

State population: 608,827

228 hospitalized with TBI

2,385 ED visits for TBI

160 TBI disabled

Planning: 2001, 2002

Implementation: 2004, 2005

*TBI-specific Medicaid waiver (1994)

Vermont’s TBI advisory board, located within the Vermont Division of Vocational Rehabilitation, was established in September 2002. Its 24 members are appointed by the Division of Vocational Rehabilitation. They include one-third each of agency staff, consumers/family, others. In 2003, outside consultants were chairing meetings every 2–3 months until the board could be fully established. The steering committee met every 2–3 weeks. The board undertakes broad activities, but its initial focus was on the HRSA grant.

Virginia

Virginia Department of Rehabilitation Services

State population: 7,078,515

4,586 hospitalized with TBI

28,711 ED visits for TBI

1,921 TBI disabled

Planning: 1998, 1999

Implementation: 2002, 2003, 2004

Virginia’s TBI advisory board, located within the state Department of Rehabilitation Services, was established in 1986 by executive order. Its 31 members were appointed initially and sustained by election. They include 52% agency staff; 23% consumers/family; 25% others. The board, which meets at least quarterly, advises the commissioner of the Department of Rehabilitation Services and is involved with development and implementation of strategic plan.

Washington

Washington Department of Social and Health Services

Planning: 2000, 2001

Implementation: 2003, 2004, 2005

Washington’s TBI advisory board was established in Washington in 2000 and is located within the Department of Social and Health Services. Its 25 members are appointed by the division director. The board includes 40% agency staff; 50% consumers/family; 10% others.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): TBI-specific Medicaid waiver

State agency: Vocational Rehabilitation

Year funding source established: 1994

Annual amount(s): $2,151,635

Number served: 50

Vermont has a trauma registry.

Vermont’s person-centered Medicaid TBI waiver.

State TBI funding source(s): General revenues, Trust fund

State agencies: Rehabilitation Services, Rehabilitation Services

Year funding source(s) established: 1984, 1998

Annual amount(s): $1,801,000; $1.1 to 1.5 million

Number served: Unknown

General revenues support registry (also federal vocational rehabilitation funds), direct services, long-term rehabilitation case management. Virginia’s trust fund was established in statute and is supported by drivers’ license reinstatement fees. It is used to fund research and grants to community rehabilitation providers. Persons with TBI in Virginia can access one of six Medicaid waivers if eligible.

Virginia has a trauma registry and TBI registry.

—Virginia’s Department of Rehabilitation Services developed and annually sponsors a Life Skills Trainer Program for individuals and organizations interested in obtaining more training working with persons with TBI.

—Virginia’s general assembly approved using some trust fund money to hire a staff person to manage the trust fund.

Washington does not have any dedicated TBI-specific funding sources, but for people with disabilities housing supplements are provided up to 6 months from the Civil Penalties Fund to assist transition from nursing homes.

Washington has a trauma registry.

 

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Washington

State population: 5,894,121

4,147 hospitalized with TBI

25,763 ED visits for TBI

1,724 TBI disabled

 

The board meets monthly and is engaged in collaboration and planning and in producing the statewide TBI action plan.

West Virginia

West Virginia Division of Rehabilitation Services

State population: 1,808,344

770 hospitalized with TBI

8,033 ED visits for TBI

538 TBI disabled

Planning: 1997

Implementation: 1999, 2000, 2001

Post-Demonstration: 2002, 2004

West Virginia has an advisory board, located in West Virginia’s Division of Rehabilitation Services, that serves both TBI and spinal cord injury. The board was established by statute in 1996. Its has 23 members, of whom 39% are agency staff and 61% are consumers/family. State agency representatives serve as ex officio members; consumers/family are appointed by the governor. The board meets quarterly and addresses broad issues.

Wisconsin

Wisconsin Department of Health and Family Services

State population: 5,363,675

2,728 hospitalized with TBI

20,067 ED visits for TBI

1,343 TBI disabled

Planning Grant: 1997, 1998

Implementation: 1999, 2000, 2001

Post-Demonstration: 2002, 2004

*TBI-specific Medicaid waiver (1995)

Wisconsin’s statewide TBI advisory board, created in 1998, is an ad hoc committee of the Developmental Disabilities Council. The 17-member committee includes 31% agency staff; 38% consumers/family; 31% others. The lead state agency for TBI, the Wisconsin Department of Health and Family Services, recommends appointments to the ad hoc committee. The committee meets five times per year. It addresses a wide range of issues and engages in collaboration, education, and planning.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

A medical institution income exemption allows persons to have money to maintain their home. Persons with TBI may use the Medicaid aging and disabled waiverf based on functional abilities rather than diagnosis.

 

State TBI funding source(s): General revenue

State agencies: Division of Rehabilitation Services

Year funding source established: 1998

Annual amount(s): $250,000

Number served: 7,551

7,551 persons received information and referral services; 80 also received case management and direct services. Persons may also use Medicaid mental retardation and developmental disabilitiesg or aging and disabled waivers if eligible.

West Virginia has a trauma registry, TBI registry, and CDC-funded surveillance system. The TBI registry is established in statute. The Division of Rehabilitation Services contracts data collection. It currently does not include followup contact.

—West Virginia has developed a transportation guidebook, accreditation standards, and a resource coordination model.

—A resolution was passed to study dedicated funding for TBI/spinal cord injury, 2002.

—Medicaid mental retardation and developmental disabilities and aging and disabled waivers may be used by TBI eligibles.

State TBI funding source(s): TBI-specific Medicaid waiver

State agency: Department of Health and Family Services

Year funding source established: 1995

Annual amount(s): $14,397,750

Number served: 225

522 persons with TBI are also served via other Medicaid waivers in Wisconsin. The state’s lead agency for TBI provides matching funds to support the Medicaid TBI waiver.

Wisconsin does not have any formal reporting mechanisms but is in the process of developing a TBI registry. Current HRSA grant activities include development of an annual report based on hospital discharge information.

Wisconsin uses personal futures planning for all programs and has developed a short screening tool to identify persons with TBI in the Federal Temporary Assistance for Needy Families Program who have barriers to employability.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State, Lead State Agency for TBI, and Other Informationa

Federal TBI Program Grant(s) Received from HRSA

Statewide TBI Advisory Board

Wyoming

Wyoming Department of Health

State population: 493,782

281 hospitalized with TBI

3,426 ED visits for TBI

229 TBI disabled

Planning: 2005

*TBI-specific Medicaid home and community-based waiver (2001)

A task force of Wyoming’s Developmental Disabilities Advisory Board serves as Wyoming’s statewide TBI advisory board. This task force is located in the Wyoming’s Division of Developmental Disabilities within the Department of Health. Its eight members are appointed by the director of the Division of Developmental Disabilities. They include 5% agency staff; 70% consumers/family; 25% providers. The task force meets periodically. It engages in a wide range of activities, including advocacy for and approval of a Medicaid home and community-based waiver for individuals with acquired brain injury.

NOTE: Data displayed in this table are compiled from state self-reports collected by the National Association of Head Injury Administrators (NASHIA). Programs or accomplishments reported in this table may be unique to an individual state.

aState population numbers are from the 2000 U.S. Census. Estimated data on the number of individuals with TBI hospitalization, emergency department (ED) visits, and number of individuals disabled as a result of TBI are from the most recent Centers for Disease Control and Prevention (CDC) TBI Surveillance Program and National Center for Health Statistics data as of May 20, 2005.

bOn 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.

cThe goal of the Independence Plus Grant, initiated in 2001 by the Centers for Medicare & Medicaid Services (CMS), is to develop a federal waiver that will allow individuals with disabilities to direct their own individual budget and choose the services and supports that best meet their needs in the community.

dA Medicaid choice waiver allows states to implement managed care delivery systems, or otherwise limit individuals’ choice of provider under Medicaid.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TBI-Specific State Funding

Availability of TBI-Related Data

Promising Practices and Recent Legislation Related to TBI

State TBI funding source(s): General revenues, TBI-specific Medicaid waiver

State agencies: Health/Developmental Disabilities; Health/Developmental Disabilities

Year funding source(s) established: 1999, 2001

Annual amount(s): $1.9 million, $4.5 million

Number served: 12, 80

General revenue supports the Visions Program, a residential program for persons with TBI.

 

—Wyoming refined eligibility for its TBI-specific Medicaid waiver and will be able to determine individual budgeted amounts for each person.

—Medicaid waiver implementation, funding through 2004 approved 2002.

eSouth Carolina’s Medicaid head and spinal cord injury (HASC) waiver is a type of Medicaid home and community-based services waiver, which allows states 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. Individuals served by the HASC waiver must have TBI, spinal cord injury (SCI), or a similar disability and must apply for the waiver before their 60th birthday.

fThe Medicaid aging and disabled waiver provides an alternative to nursing home care. The program includes services that allow a person to continue living in his or her home (e.g., adult day care, an emergency response system, orthotics and prosthetics, personal care and respite services).

gThe Medicaid mental retardation and developmental disabilities waiver is part of the Medicaid home and community-based waiver program, and provides services to individuals with developmental disabilities, including TBI, incurred before the age of 22.

SOURCE: Connors S, King A, Vaughn S. Guide to State Government Brain Injury Policies, Funding and Services. 1st ed. Bethesda, MD: NASHIA, 2003; King A, Vaughn SL. Guide to State Government Brain Injury Policies, Funding and Services. 2nd edition. Bethesda, MD: NASHIA, 2005.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TABLE C-2 Accomplishments of State Traumatic Brain Injury (TBI) Programs by State, 1997–2005

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Alabama

Implementation: 1997, 1998, 1999, 2000

Alabama Department of Rehabilitation Services

Post-Demonstration: 2001, 2002, 2004

Alaska

Planning: 2000, 2002

Alaska Department of Health and Social Services

Implementation: 2003, 2004, 2005

Arizona

Implementation: 1997, 1998, 1999

Arizona Department of Economic Security

Post-Demonstration: 2001

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Improved Alabama’s communication and interagency linkages to maximize services and supports for individuals with brain injuries and their families.

  • Developed and implemented the PASSAGES Model—a sustainable, community-based system of care for children and youth with TBI that is individual and family centered.

  • Trained vocational rehabilitation transition counselors to screen individuals for TBI.

Though Alabama had initiated and sustained significant TBI systems changes previously, Alabama’s Federal TBI Program grants from HRSA have led the state to identify other important issues to be addressed—for example, the need to address catastrophic insurance coverage, the potential for a TBI-specific Medicaid home and community-based services waiver, and the addition of personal care and targeted case management as optional services under Medicaid.

  • Established Alaska’s Department of Health and Social Services, Division of Behavioral Health as the lead state agency for coordinating TBI grant activities.

  • Established Alaska’s statewide TBI advisory board with members from different communities, cities, and villages, which is in the process of applying for 501(c)(3) nonprofit status.

  • Completed a statewide TBI needs/resources assessment and a statewide TBI action plan for Alaska.

  • Integrated TBI into Alaska’s existing screening tool, which is used by all community mental health and substance abuse grantees.

Alaska continues to incorporate TBI into existing systems. The state is working to raise awareness of TBI issues in the school setting so as to improve educational outcomes for students with TBI. The state is also incorporating TBI issues in other complementary federal grant projects, such as the federal Substance Abuse and Mental Health Services Administration’s jail diversion program, as well as the compacting process with the federal Indian Health Service.

  • Developed new TBI-related educational materials for Arizona and purchased and disseminated existing educational materials to consumers and providers.

  • Developed and provided professionals (e.g., educators, nurses, agency personnel) with TBI-related training on the service and support needs of children with TBI.

  • Convened an interactive TBI symposium with policy makers to discuss multiagency systems change issues.

  • Developed Arizona’s statewide TBI service coordination program within the Maternal

Despite Arizona’s many sustained accomplishments and systems changes, the Federal TBI Program grants from HRSA have helped the state identify the need for additional systems changes—for example, coordination among systems serving children, development of TBI service standards, identification of children with TBI, and mitigating policy and program eligibility differences among service programs that limit the delivery of services.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Arizona

 

Arkansas

Planning: 2001, 2002

Arkansas Department of Education

 

California

Planning: 1999, 2001

California Department of Mental Health

 

Colorado

Planning: 1999

Colorado Department of Human Services

Implementation: 2001, 2002, 2003

 

Post-Demonstration: 2004

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

and Child Health Bureau, Office for Children with Special Health Care Needs.

  • Identified Arkansas’ Department of Education as the lead state agency for coordinating TBI grant activities.

  • Established a culturally and geographically diverse statewide TBI advisory board for Arkansas.

  • Conducted a statewide TBI needs/resources assessment and created a statewide TBI action plan for Arkansas.

With additional funding, Arkansas plans to improve educational services to students with TBI; implement hospital discharge and school re-entry procedures; and develop an infrastructure to facilitate leadership and advocacy skills among the brain injury community. Another important area of need, according to the statewide TBI needs/resources assessment, is development and coordination of community long-term supports, including housing and employment services.

  • Established California’s Department of Mental Health as the lead state agency for TBI for coordinating TBI activities.

  • Established a statewide TBI advisory board

  • Completed a statewide TBI needs/resources assessment and developed a statewide TBI action plan.

Although limited resources have temporarily precluded active implementation of California’s statewide TBI action plan, efforts continue at the grassroots level to increase awareness of TBI and improve access to existing services through statewide training, a new website, and the nationwide toll-free information hotline. Legislation has been introduced to extend the sunset date of California’s TBI Fund, and advocates continue to promote permanent establishment of the fund.

  • Developed methods for providing individuals with TBI and their families in Colorado with accessible and appropriate information and referrals.

  • Initiated a cross-training program with the state’s Disability Determination Service to reduce the high disability denial rate for people with TBI.

Although Colorado’s TBI trust fund will be able to support some of the activities initiated under the Federal TBI Program grants from HRSA, there remain other issues, as identified by Colorado’s TBI action plan, that require focus—for example, development and integration of additional service coordination networks; training of professionals who serve and educate

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Colorado

 

Connecticut

Planning: 2003, 2004

Connecticut Department of Social Services

 

Delaware

Planning: 1997, 1998

Delaware Department of Health and Social Services

 

District of Columbia

Planning: 1997, 1998

D.C. Department of Health

Implementation: 1999, 2000, 2001

 

Post-Demonstration: 2002, 2003

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

children and youth with TBI; and training of state agency personnel. As professionals in California become more aware of TBI-related issues, they will be better prepared to identify and coordinate state program and policy changes.

  • Appointed members of Connecticut’s diverse and representative statewide TBI advisory board (appointment by the commissioner of the Connecticut Department of Social Services).

  • Had members of Connecticut’s statewide TBI advisory board participate in several trainings on TBI 101 and TBI among Southeast Asians.

  • Conducted seven forums on services and resources for persons with TBI throughout the state.

  • Hired a project coordinator.

Connecticut’s TBI advisory board members have drafted a bill to have the board legislatively mandated. Connecticut continues to develop the members of the advisory board and complete Connecticut’s TBI needs/resources assessment in order to create a statewide TBI action plan that will define the optimal coordination system of services and supports for individuals with TBI and their families in the state.

  • Completed Delaware’s statewide TBI needs/resources assessment.

  • Developed a statewide TBI action plan.

  • Identified barriers individuals with TBI and their families face in trying to access appropriate services and supports.

  • Developed educational resources for caregivers, families of individuals with TBI.

Delaware has received approval for a TBI-specific Medicaid TBI waiver and is currently in the process of implementation. Other issues identified in the statewide TBI action plan may be addressed in the future with additional funding.

  • Produced culturally sensitive educational materials related to TBI.

  • Collaborated with the faith-based community to promote TBI awareness

  • Established a TBI registry for D.C.

D.C. continues to work with appropriate stakeholders to ensure the sustainability of the D.C. TBI registry. D.C. is also addressing the transition process to daycare, preschool, middle and high school, as well as the transition to post-secondary options for infants, children, youth, and young adults with TBI.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Florida

Implementation: 1997, 1998, 1999, 2000

Florida Department of Health

Post-Demonstration: 2001, 2003, 2004

Georgia

Planning: 1997

Brain and Spinal Injury Trust Fund Commission

Implementation: 1998, 1999, 2000

 

Post-Demonstration: 2004

Hawaii

Planning: 1999, 2000

Hawaii Department of Health

Implementation: 2002, 2003, 2004

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Adapted the Partners in Policymaking model of leadership training for individuals with TBI in Florida.

  • Increased awareness of TBI-related issues and available resources for individuals with TBI and their families in Florida through public awareness campaigns with the copyrighted slogan: “Brain Injury, It’s the last thing on your mind, until it’s the ONLY thing.”®.

With each additional Federal TBI Program grant, Florida addresses yet another area in its statewide TBI action plan. Currently, state resources are being leveraged to improve the employment outcomes for individuals with TBI and their families. Florida has also been successful in integrating TBI issues in its Olmstead planninga and its Real Choice Systems Change Grant from the Centers for Medicare & Medicaid Services (CMS).

  • Transitioned the lead state agency role to the Brain and Spinal Injury Trust Fund Commission.

  • Worked with the Brain Injury Resource Foundation to expand access to family resources.

  • Enhanced the state’s TBI registry by changing methods for data collection.

As the new lead state agency for TBI, Georgia’s Brain and Spinal Injury Trust Fund Commission is redeveloping the former statewide TBI advisory board as a permanent body to lead systems change. Additionally, efforts are underway to update the statewide TBI needs/resources assessment. The statewide TBI action plan has identified the need to increase access to transportation, neurobehavioral, and cognitive rehabilitation services; lifelong services; and supports that include rehabilitation and housing.

  • Completed Hawaii’s statewide TBI needs/resources assessment and developed a statewide TBI action plan.

  • Developed and maintained a toll-free help line for information and referral that receives an average of 25 calls per month.

  • Implemented a distance learning program in brain injury with George Washington University.

  • Produced a website and resource directory.

  • Disseminated a TBI information packet for acute care and rehabilitation hospitals.

Hawaii continues to educate the community about TBI through a speakers bureau and other mechanisms and develop the capacity of the statewide TBI advisory board members to lead systems change efforts. Among the priorities identified in the statewide TBI action plan are the need to gather and utilize reliable information from program evaluations, increase TBI awareness, and improve access to coordinated TBI services throughout the state.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Idaho

Planning: 2000, 2001

Idaho Department of Health and Welfare

Implementation: 2003, 2004, 2005 Illinois Planning: 1997, 1998

Illinois Department of Human Services

Implementation: 2000, 2001, 2002

Indiana

Planning: 1999

Indiana Department of Health

 

Iowa

Planning: 1997

Iowa Department of Public Health

Implementation: 1998, 1999, 2000

 

Post-Demonstration: 2001, 2002, 2003

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Presented a Virtual Program Center prototype at a congressional fair for the U.S. Senate in June 2002.

  • Developed and produced the Virtual Grand Rounds semester-long series, attended to date by 350 individuals.

  • Downsized tripartite advisory councils to maximize efficiency and effectiveness.

  • Finalized charter for Idaho’s lead state agency for TBI signatures.

  • Assisted with passage of trauma legislation

  • Completed Idaho’s annual statewide TBI needs/resources assessment of providers, agency personnel, persons with TBI, and family members.

  • Completed a policy analysis of payment systems and a review for cost neutrality.

Idaho’s fall 2004 Virtual Grand Rounds were being coordinated with Washington State. Idaho also expected to continue its economic analysis in collaboration with the Real Choice Systems Change Grant from CMS; the development of the TBI Virtual Program Center; its continued coordination with state and federal community integration and self-determination efforts (e.g., Commission on Aging, Consortium of Idahoans with Disabilities, and Telehealth Idaho).

  • Completed Illinois’ statewide TBI needs/resources assessment and developed a statewide TBI action plan.

  • Improved the state’s infrastructure for providing appropriate information and resources to individuals with TBI, families, and service professionals.

  • Conducted TBI training programs in the state.

  • Developed a satisfactory survey instrument.

Illinois is working to implement elements of the statewide TBI action plan. For example, efforts continue to improve access to transportation, improve vocational rehabilitation services and employment outcomes, and increase access to educational services and institutions.

  • Established Indiana’s lead state agency to coordinate TBI grant activities.

  • Established a statewide TBI advisory board.

  • Completed a statewide TBI needs/resources assessment.

  • Developed a statewide TBI action plan.

Indiana has utilized a TBI Planning Grant to identify and begin to organize state resources. The state’s planning activities have provided valuable information that will help establish priorities for future TBI systems change activities.

  • Established the Iowa Brain Injury Resource Network as part of the Brain Injury. Association of Iowa’s coordinated discharge planning program at more than 50 trauma, rehabilitation, and service/support locations.

  • Implemented the Iowa Family Support Network—a peer-to-peer mentoring network of 26 families—within the Iowa Brain

A priority for Iowa’s TBI program is to identify and secure alternative sources of financial support to ensure the long-term sustainability of projects initiated during the grant. Additionally, Iowa continues to work on developing and implementing Injury standards of care to ensure service

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Iowa

Kansas

Planning: 2001, 2002

Kansas Department of Social and Rehabilitation Services

Implementation: 2003, 2004, 2005

Kentucky

Planning: 1999

Kentucky Cabinet for Health Services/Department of Mental Health and Mental Retardation

Implementation: 2003, 2004, 2005

Louisiana

No Federal TBI Program grants received

Louisiana Department of Social Services/Rehabilitation Services

 

Maine

Planning: 2003, 2004

Maine Department of Human Services

Implementation: 2005

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

Resource Network.

  • Increased access to educational materials, services, and supports for individuals with TBI and their families, including development of a website, www.biaia.org.

quality and cost effectiveness, make case management available to all individuals with TBI, and ensure that the Brain Injury Association of Iowa is recognized as the single point of contact for statewide information and referral services.

  • Established Kansas’ statewide TBI advisory board.

  • Conducted a statewide TBI needs/resources assessment and developed a statewide TBI action plan.

  • Collaborated with a local Veterans Administration Center on the development of a statewide TBI conference.

  • Planned statewide forums on TBI for professionals from various disciplines.

Kansas continues to address areas of need as identified by its statewide TBI action plan by promoting awareness of TBI within various professional communities; developing a screening tool and licensure process for substance abuse counselors; and further developing the statewide TBI advisory board.

  • Completed Kentucky’s TBI needs/resources assessment and developed a statewide TBI action plan.

  • Hired staff and signed agreements to implement the natural support networks.

  • Established a mechanism for the permanent, required inclusion of brain injury in Division of Mental Retardation training.

  • Drafted a brain injury training model under a memorandum of agreement with the Division of Mental Health.

Kentucky is also working to address other issues as identified by the statewide TBI action plan: maximizing the ability of individuals with TBI and their families to plan for and support themselves in their homes and communities and establishing sustainable funding for needed services.

  • Established Maine’s statewide TBI advisory board.

  • Conducted 12 focus groups and 13 personal interviews with and distributed 550 surveys to individuals with TBI and their families; also conducted five focus groups with and distributed 200 surveys to providers as part

Maine will address some of the issues identified in its statewide TBI action plan to improve the lives of individuals with TBI.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Maine

 

Maryland

Planning: 1998

Maryland Department of Health and Mental Hygiene

Implementation: 1999, 2000, 2001

 

Post-Demonstration: 2003, 2004

Massachusetts

Implementation: 2000, 2001, 2002

Massachusetts Executive Office of Health and Human Services/Rehabilitation Commission

 

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

of the statewide TBI needs/resources assessment process.

  • Completed Maryland’s statewide TBI needs/resources assessment, developed a statewide TBI action plan, and established a statewide TBI advisory board.

  • Established a workgroup to identify and assess state agency data on brain injury services and supports.

  • Developed a directory of resources for people with TBI, families, professionals.

  • Conducted TBI training program for state agency personnel.

  • Created training modules for self-advocacy for individuals with TBI and their families

  • Implemented a TBI-specific Medicaid waiver.

Maryland is continuing its efforts to increase statewide awareness of TBI and to ensure individuals with TBI and their families have access to the information they need to access appropriate services.

  • Developed, translated, and now has available TBI information in multiple languages for Massachusetts residents.

  • Conducted TBI training programs, including train-the-trainer programs, for providers from diverse communities.

  • Recruiting case managers and clinical consultants within organizations of underserved populations and establishing support groups within these communities.

  • Presently working with the Chinese, Vietnamese, Cambodian, and Latino communities as an integral part of the state’s system.

  • Hired a consultant who is both African American and Native American and has a brain injury to assist in multicultural outreach.

  • Has ensured that the state staff now includes individuals whose cultural backgrounds and primary language are Chinese, Vietnamese, and Cambodian.

Other needed systems change priorities identified in the Massachusetts statewide TBI action plan include the need to increase access to community-based services, family support services, school capacity to serve children with TBI, and the need for improved funding, among others.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Michigan

Planning: 1998

Michigan Department of Community Health

Implementation: 2001, 2002, 2003

 

Post-Demonstration: 2004

Minnesota

Implementation: 1997, 1998, 1999

Minnesota Department of Human Services

Post-Demonstration: 2002, 2003

Mississippi

Planning: 1997

Mississippi Department of Rehabilitation Services

 

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Designated Michigan’s Department of Community Health as the lead state agency for TBI.

  • Established a statewide TBI advisory board.

  • Completed a statewide TBI needs/resources assessment.

  • Developed a statewide TBI action plan.

  • Developed and distributed a resource guide for persons with TBI and their families.

  • Initiated TBI training for service and support consumers and providers.

  • Developed a diary, a training manual, and access guidelines for persons with TBI.

Michigan is developing strategies to maximize the effective and efficient use of public funds, promote public-private partnerships, improve service coordination, and ensure TBI services and supports are comprehensive and support individually determined outcomes to the extent possible.

  • Established Minnesota’s statewide TBI advisory board, completed a statewide TBI needs/resources assessment, and developed a statewide TBI action plan, which continues to be updated.

  • Formalized the preexisting strong partnership between five state agencies and the Brain Injury Association of Minnesota with an Interagency Agreement to address agency gaps and overlaps in policy, funding, and services, creating the Minnesota TBI Interagency Leadership Council.

  • Expanded the Interagency Leadership Council to include Minnesota’s Department of Corrections, the TBI Protection and Advocacy Program, and the TBI Program at the VA Medical Center, Minneapolis.

  • Implemented the “Hospital Discharge Model” (now “resource facilitation”), which wa developed and enhanced by the federal TBI Program grants statewide. The 2003 Minnesota state legislature funded a special surcharge, part of the TBI-dedicated funds.

Minnesota’s statewide TBI action plan identifies systems change needs in addition to work begun and sustained by the state’s Federal TBI Program grants from HRSA. These additional needs include improved access to pertinent information; better linkage to resources in various systems (e.g., education, work, behavioral health, etc.); coordinating with “border hospitals” in neighboring states; and outreach to the underserved.

  • Identified Mississippi’s Department of Rehabilitation Services as the lead state agency for TBI.

With an additional Federal TBI Program Planning Grant from HRSA, Mississippi plans to convene a statewide TBI advisory board, which will conduct a statewide TBI needs/resources assessment and formulate a statewide TBI action plan. As a

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Mississippi

 

Missouri

Implementation: 1997, 1998, 1999, 2000

Missouri Department of Health and Senior Services

Post-Demonstration: 2001, 2002, 2004

Montana

Planning: 2001, 2002

Montana Department of Public Health and Human Services

Implementation: 2003, 2004, 2005

Nebraska

Planning: 2000, 2001

Nebraska Department of Education

Implementation: 2002, 2003, 2004

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

result of the initial planning phase, several significant systems change needs were identified. For example, it was learned that individuals with TBI and their families are often unaware of existing TBI services and supports and have difficulty accessing appropriate services and supports, or services and resources are unavailable in some communities.

  • Developed and trained rural service providers in Missouri, expanding the rural provider base

  • Developed and initiated a service coordinator training program and evaluation system that focuses on outcomes (e.g., community inclusion, competitive employment) for Missouri’s Head Injury Program

  • Developed and initiated an outreach and education initiative to ensure that underserved communities have access to TBI information

Missouri is working to implement a service coordination and Futures Planning model statewide, and to ensure that reliable, person-centered outcome data are utilized to evaluate programs. Other priorities identified in its statewide TBI action plan include: addressing the needs of individuals with behavioral issues; improving employment outcomes; addressing the unique needs of children with TBI.

  • Completed Montana’s statewide TBI needs/resources assessment

  • Montana legislation created a special revenue fund for public information and education on TBI and established a governor-appointed statewide TBI advisory board

Montana continues to develop its information and referral program; create coordinated services within two Indian Reservations; and create training modules for providers and individuals with TBI and their families. Cultural competence is infused in the project via the Native American representation on the statewide TBI advisory board.

  • Completed Nebraska’s statewide TBI needs/resources assessment and developed a statewide TBI action plan

  • Designed and established a coordinated service structure with a designated “point of entry”—NEBrainstorm, the state’s brain injury resource network

Nebraska’s priorities, as identified by its statewide TBI action plan, are to increase awareness of the service and support needs of individuals with TBI and their families, increase the local availability of services and supports, and improve the

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Nebraska

 

Nevada

Planning: 1997, 2005

Nevada Office of Community-Based Services

 

New Hampshire

Planning: 1997, 1998

New Hampshire Department of Health and Human Services/Division of Developmental Services

Implementation: 2000, 2001, 2002

Post-Demonstration: 2003, 2004

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Initiated a brain injury network focused on community awareness and education.

  • Established new services, including a service collaborative of vocational rehabilitation, health, and education agencies.

coordination of services and funding sources.

  • Identified Nevada’s lead state agency for TBI.

  • Conducted a statewide TBI needs/resources assessment.

Nevada has completed a number of important statewide planning and organizational activities. These efforts have identified the need to develop a coordinated approach to services and supports delivery, increase access to information and referral services, increase access to services and supports, and increase public awareness of TBI-related issues.

  • Completed New Hampshire’s statewide TBI needs/resources assessment and a statewide TBI action plan.

  • Developed an acquired brain disorders training curriculum and an education program for individuals with TBI and families.

  • Trained providers in evaluating and treating neurobehavioral consequences of TBI via mobile resource teams. Team sustainability is pending legislative authorization.

  • Developed a peer mentoring program to train mentors (both individuals with TBI and family members) and match mentor to mentee.

  • The New Hampshire Legislature has appropriated $200,000 that, in part, funds the Brain Injury Association of New Hampshire’s resource facilitation program.

  • Established agreements with four rehabilitation facilities throughout New Hampshire to support monthly family trainings.

New Hampshire is also working to address other issues as identified by the statewide TBI action plan: increasing the knowledge base and skills of professionals; developing statewide capacity to provide responsive service coordination and referral; and continuing to strengthen the statewide TBI advisory board.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

New Jersey

Implementation: 1999, 2000, 2001

New Jersey Department of Human Services

Post-Demonstration: 2002, 2003, 2004

New Mexico

Implementation: 2001, 2002, 2003

New Mexico Department of Health

 

New York

Implementation: 1997, 1998, 1999, 2000

New York Department of Health

Post-Demonstration: 2001, 2002, 2004

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Developed a mentor training program for family members and individuals with TBI in New Jersey.

  • Expanded the capacity of hospital chaplains and community clergy to support individuals with TBI and their families.

  • Produced print and electronic materials for individuals with TBI, families, service providers, and education system professionals in multiple languages and alternate formats.

  • Developed an urban pilot for outreach and support for persons with TBI in underserved populations with a community agency.

New Jersey continues to develop and disseminate educational materials for various audiences. New Jersey also integrates TBI in other disability initiatives, including Olmstead planning initiatives and its Real Choice Systems Change Grant from CMS. With the establishment of the New Jersey TBI Fund and a Brain Injury Research Fund, New Jersey has gained a significant boost ($3.4 million annually) toward the sustainability of its systems change efforts initiated with the Federal TBI Program.

  • Required all TBI program providers in New Mexico to provide customer satisfaction surveys.

  • Developed a TBI education/resource manual in English and Spanish, Navajo audio, CD, and website formats.

  • Increased the number of telephone calls to the information and referral line by disseminating a TBI wallet information card.

  • Conducted advocacy training sessions for 50 individuals.

  • Achieved TBI-favorable policy changes improving TBI awareness.

  • New Mexico legislature appropriated $100,000 yearly for continuation of awareness and education projects, including billboards, public service announcements, a TV special, posters, and bumper stickers.

New Mexico is working with several contractors to conduct program evaluations of existing state TBI service and support systems. The results of these evaluations will help to guide future systems change activities. A refresher advocacy training course will be given to the 50 advocacy graduates in preparation for passage of the TBI-specific Medicaid waiver in the 2005 legislative session.

  • Established a collaborative partnership among New York state agencies, service providers, consumers of services, and advocacy organizations.

  • Developed culturally competent educational materials and tools, discharge planning models, and training modules for the African-American/Caribbean, Chinese American, and Latino communities.

  • Completed analyses of TBI-specific Medicaid waiver participant satisfaction and submitted report to HRSA with recommendations.

New York continues to evaluate the efficacy and cost effectiveness of service and community reintegration. Other ongoing activities include increased service coordination, and collaboration with insurance companies and health maintenance organizations.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

North Carolina

Implementation: 1997, 1998, 1999

North Carolina Division of Mental, Developmental Disabilities, and Substance Abuse Services

Post-Demonstration: 2001

North Dakota

Planning: 2003, 2004

North Dakota Department of Human Services

 

Ohio

Implementation: 1998, 1999, 2000

Ohio Rehabilitation Services Commission

Post-Demonstration: 2002, 2003, 2004

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Graduated North Carolina’s TBI action plan from an informally updated document to a proactive tool for policy development, legislative initiatives, and program expansion.

  • Developed or modified existing TBI educational materials for distribution to service professionals and individuals with TBI as well as their families.

  • Worked with North Carolina trauma centers to ensure key hospital support staff members have the information and training necessary to assist individuals with TBI and their families as they prepare to leave the hospital.

  • Developed a skill pack for hospital staff to improve the outcomes of the discharge process.

In North Carolina, in addition to the systems changes addressed by Federal TBI Program grants, the statewide TBI action plan has identified a need to increase public awareness about TBI-related issues, develop rehabilitation programs that include prevocational and vocational rehabilitation with therapies, secure financing to support local service and support programs, and develop a regional information and resources infrastructure.

  • Established North Dakota’s statewide TBI advisory board with representation from the Native American community and service providers.

  • Initiated North Dakota’s statewide TBI needs/resources assessment process.

  • Conducted a focus group process in five Native American communities and five urban communities.

  • Began the survey process of TBI service (medical and program) providers.

North Dakota is working to establish a lead state agency for TBI and complete its statewide TBI needs/resources assessment. The results of this process will provide the information needed to develop a comprehensive statewide TBI action plan, which will provide the foundation and direction for future systems change activities in North Dakota.

  • Further developed a state blueprint—The Ohio Plan—for a comprehensive, resource coordination system that includes a statewide toll-free helpline; regional community support network (CSN) offices; and individual services coordination.

  • Added four CSN offices (two in Appalachia, two in metro areas).

  • Developed communication and accountability infrastructure supports for The Ohio Plan including website and Internet access, interoffice network, and databases documenting numbers served, customer satisfaction, and programs and services.

  • Promoted community capacity-building initiatives through involvement of CSN

Ohio is updating its joint Brain Injury Advisory Committee—Brain Injury Association of Ohio statewide TBI action plan and working with policy makers to ensure access to services and supports for persons with brain injury and their families.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Ohio

 

Oklahoma

Planning: 1997, 1998

Oklahoma Department of Health

Implementation: 1999, 2000, 2001

 

Post-Demonstration: 2003, 2004

Oregon

Planning: 1997

Oregon Department of Education

Implementation: 1998, 1999, 2000

 

Post-Demonstration: 2001, 2002, 2004

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

personnel, TBI Collaborative Groups, support groups, and individuals with TBI and their families.

  • Conducted “town hall” meetings providing forums for citizens with brain injury and their families to voice their needs and to generate greater awareness about TBI.

  • Implemented a pilot hospital pre-discharge planning model in three hospitals in Oklahoma.

  • Developed, implemented, and evaluated TBI training curricula for vocational rehabilitation counselors, allied health students, and law enforcement.

  • Developed, distributed, and evaluated four TBI brochures for emergency departments, hospitals, vocational rehabilitation, and the Brain Injury Association of Oklahoma in English and Spanish.

  • Assisted in marketing, client base expansion, and service evaluation of the Brain Injury Association of Oklahoma.

  • Conducted a TBI Practice and Research Symposium in 2003 with high attendance and excellent evaluation results.

Oklahoma is sharing its discharge planning model improvement recommendations with hospitals and other groups. Oklahoma’s statewide TBI action plan has also identified a need to improve prevention of common secondary effects of TBI.

  • Implemented the Oregon TBI Resource Team to provide TBI-related information and assistance to local school systems.

  • Established the Oregon Brain Injury Resource Network to provide timely, appropriate TBI information to individuals with TBI, families, and service providers.

  • Developed a family-advocacy training curriculum.

  • Established the Oregon Brain Injury Council, a state-level coordinating group.

  • Established a Governor’s Brain Injury Task Force to inform state-level infrastructure decisions.

  • Established a Curry County Collaborative to build regional capacity to improve access to community-based services.

Oregon continues to develop a single point of contact where individuals with TBI, families, and service and support providers can access information about TBI services and supports and to expand the Cadre Model to work with larger communities around the state. The state’s partners continue the legislative efforts begun under the grant.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Pennsylvania

Planning: 2001, 2002

Pennsylvania Department of Health

Implementation: 2003, 2004, 2005

Rhode Island

Planning: 1999, 2000

Rhode Island Department of Human Services

Implementation: 2002, 2003, 2004

South Carolina

Planning: 1997, 1998

South Carolina Department of Disabilities and Special Needs

Implementation: 2000, 2001, 2002

 

Post-Demonstration: 2004

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Established Pennsylvania’s statewide TBI advisory board.

  • Conducted a statewide TBI needs/resources assessment and developed a statewide TBI action plan.

  • Reviewing materials for the information and referral clearinghouse, library, and trainings.

Pennsylvania continues to strengthen its interagency collaborations to address issues identified in its statewide TBI action plan, including the need for greater public awareness of TBI and the improvement in the quality of care and services for those with TBI and their families.

  • Completed Rhode Island’s statewide TBI needs/resources assessment and developed a statewide TBI action plan.

  • Increased communication and collaboration with stakeholders, individuals with TBI, and their families.

  • Established a TBI resource center in an accessible storefront location.

  • Increased telephone queries and walk-ins to the TBI Resource Center by 300 percent—most likely due to the more than 8,000 fact sheets (in English, Portuguese, Spanish, and Cambodian) and emergency medical technician cards (in English and Spanish) distributed statewide, plus radio broadcasts and a television news story.

Future activities include increasing public awareness of the causes and consequences of TBI, improving the TBI knowledge and skills of health and service professionals, improving access to information and resources on TBI for individuals with TBI and families, improving service coordination statewide, and increasing the focus on person-centered services and supports, among other issues. Also, Rhode Island continues to develop its Needs and Resource Directory as well as training videos. Legislation has been introduced to expand the Governor’s Permanent Advisory Council and to establish a trust fund to pay for expanded services for people with TBI and their families.

  • The Brain Injury Alliance of South Carolina is developing as a unified statewide consumer organization affiliated with the Brain Injury Association of America.

  • The South Carolina Brain Injury Leadership Council is becoming more active and effective as the statewide TBI advisory board.

  • Initiated the “Community Opportunities” model (which includes a resource/drop-in center, individual rehabilitation supports, and a vocational interests and productivity program) into four areas of South Carolina.

  • Increased the number of people with TBI served by the program and increased the number of people with TBI employed.

Although South Carolina has a basic service structure in place and some dedicated funding for TBI, implementation of specialized employment preparation for individuals with TBI and TBI training for state agency staff and professionals remain important areas of need.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

South Carolina

 

South Dakota

No Federal TBI Program grants received

Tennessee

Implementation: 2000, 2001, 2002

Tennessee Department of Health

Post-Demonstration: 2003, 2004

Texas

Planning: 1997, 1998

Texas Department of Health and Human Services

Implementation: 2000, 2001, 2002

 

Post-Demonstration: 2004

Utah

Planning: 2001, 2002

Utah Department of Human Services

Implementation: 2003, 2004

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Established the TBI Training Institute within the University of South Carolina School of Medicine, Center for Disability Resources.

  • Developed a TBI curriculum entitled “Brain Injury 101: Supporting Students with Brain Injury in the Classroom” to raise awareness of TBI and to provide information to those serving students with TBI.

  • Produced an educational video entitled “Take Two: Life After TBI” to illustrate the effects of brain injury on three Tennessee families.

  • Trained over 1,000 with the “Brain Injury 101” curriculum.

  • Established the Project BRAIN Summer Institute, an intensive training for BRAIN ResourceTeams.

  • Established 17 multidisciplinary Resource Teams of education professionals.

Tennessee’s statewide TBI action plan has identified the need to secure sustainable financial support for TBI services and supports, improve access to the information and services individuals with TBI and their families need, and to improve service coordination.

  • Reviewed and commented on TBI-related Texas legislation and reports.

  • Informed the Texas state legislative process during enactment of legislation prohibiting insurers from excluding cognitive rehabilitation coverage for individuals with TBI; worked with the state Department of Insurance to draft implementing regulations.

  • Provided training on TBI to case managers.

  • Developed and disseminated concussion cards to emergency medical service providers and family packets to trauma centers.

The Texas TBI program continues to participate with state agencies to ensure that barriers to coordinated and comprehensive TBI services and supports are eliminated, and to ensure that individuals with TBI and their families are appropriately served across the state.

  • Designated Utah’s Department of Human Services as the lead state agency for TBI.

  • Increased the diversity of the statewide TBI advisory board by 20 percent.

  • Completed a statewide TBI needs/resources assessment.

  • Developed and promoted the statewide TBI action plan.

With its Implementation Grant, Utah began its analysis of current state policies for functionality and as a basis for promoting TBI-favorable systems change. Utah will also continue its efforts to develop a comprehensive information and referral system and improve the case

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

Utah

 

Vermont

Planning: 2001, 2002

Vermont Division of Vocational Rehabilitation

Implementation: 2004, 2005

Virginia

Planning: 1998, 1999

Virginia Department of Rehabilitation Services

Implementation: 2002, 2003, 2004

Washington

Planning: 2000, 2001

Washington Department of Social and Health Services

Implementation: 2003, 2004, 2005

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Initiated a rural pilot to improve the case management and education services provided to those with TBI and their families.

management and education services, among others, for those with TBI and their families.

  • Established Vermont’s statewide TBI advisory board.

  • Conducted a statewide TBI needs/resources assessment.

  • Developed a statewide TBI action plan.

With its Planning Grant, Vermont made great strides in identifying the next steps in achieving systems change for those with TBI and their families. The Implementation Grant will allow Vermont to address a subset of the needs identified by the statewide TBI action plan.

  • Played a significant role in garnering $1 million in new state funding for brain injury services in Virginia.

  • Involved in local group that successfully established the Center for Independent Living services in underserved areas.

  • Developed three TBI documentaries, two of which aired on public access; also, public service announcements aired in two areas.

  • Developed best practice manual for primary and secondary education, as well as a policy maker’s manual on TBI.

  • Developed an “Advocacy Academy” for consumers and family members.

  • Developed and disseminated 500 “TBI and Domestic Violence” tip cards.

Virginia will continue to address needs identified by its statewide TBI action plan: regional resource centers, a central registry, neurobehavioral treatment, case management, personal assistance, improved employment outcomes, transportation, and individual/family support.

  • Completed Washington’s statewide TBI needs/resources assessment and developed a statewide TBI action plan.

  • Incorporated existing Federal TBI Program products and others into a TBI Tool Kit using a consumer-directed process.

  • Developed a framework to enhance public and professional education through product development and dissemination.

  • Developed an interactive TBI educational series targeting the needs of rural and urban communities in collaboration with the University of Washington’s TBI Model Systems and Idaho’s Federal TBI Program grants.

Washington continues to further strengthen its various interagency collaborations and its statewide TBI advisory board to achieve the priorities as identified in the statewide TBI action plan, including the development of support for a housing option specifically for those with TBI.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and Lead State Agency for TBI

Federal TBI Program Grant(s) Received from HRSA

West Virginia

Planning: 1997

West Virginia Division of Rehabilitation Services

Implementation: 1999, 2000, 2001

 

Post-Demonstration: 2002, 2004

Wisconsin

Planning: 1997, 1998

Wisconsin Department of Health and Family Services

Implementation: 1999, 2000, 2001

 

Post-Demonstration: 2002, 2004

Wyoming

Planning: 2005

Wyoming Department of Health

 

NOTE: Data displayed in this table are compiled from state self-reports collected by the National Association of Head Injury Administrators (NASHIA). Programs or accomplishments reported in this table may be unique to an individual state.

aOn 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.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State TBI Program

Continuing Efforts by the State

  • Surveyed 10,000 service providers across West Virginia to identify local service and support capacity

  • Conducted TBI and service coordination training for service and support professionals across the state

  • Developed, implemented, and disseminated a TBI training curriculum and the “Road Map to the Future” (resource coordination organizational tool) to increase state agencies’ capacity to provide appropriate, person-centered TBI services

West Virginia will continue to collaborate with other state projects including the Real Choice Systems Change Grant from CMS and the Nursing Home Transition Project to address other issues prioritized by the statewide TBI action plan: improved self advocacy training for individuals with TBI; and comprehensive and coordinated systems of services and supports, from hospital discharge to community integration, among others.

  • Established the Brain Injury Association of Wisconsin as a central point of contact for information and referral services

  • Established a data system to record and analyze data on service needs, individual outcomes, program evaluation, and customer satisfaction

Wisconsin is incorporating the TBI service delivery system into existing state and county services. The emphasis at this time is to develop further the statewide TBI advisory board; address the various needs of the Native American and other underserved populations; and explore sustainability options for activities initiated under Federal TBI Program grants. A partnership between the Brain Injury Association of Wisconsin and the Association for Retarded Citizens of Wisconsin continues as the organizations work to increase disability service capacity in rural areas.

As of March 2005, Wyoming did not have results to report from its 2005 TBI Planning Grant from HRSA.

SOURCE: Connors S, King A, Vaughn S. Guide to State Government Brain Injury Policies, Funding and Services. 1st ed. Bethesda, MD: NASHIA, 2003; King A, Vaughn SL. Guide to State Government Brain Injury Policies, Funding and Services. 2nd ed. Bethesda, MD: NASHIA, 2005.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

TABLE C-3 State-Based Protection and Advocacy (P&A) Systems for Individuals with Developmental Disabilities: Goals and Accomplishments Related to P&A for Individuals with Traumatic Brain Injury (PATBI) by State, 2005

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Alabama

Alabama Disabilities Advocacy Program

PATBI Grant: $150,000

  1. Increase outreach and advocacy services to adults and children with TBI and their families residing in Alabama’s rural areas.

  2. Advocate for appropriate treatment or rehabilitation for persons with TBI residing in state-funded institutions or participating in state-funded community programs.

  3. Advocate for proper treatment of people with TBI in the criminal justice system.

  4. Advocate for the reduction of seclusion and restraint practices for adults and children with TBI residing in state-funded institutions and community programs.

  5. Assist and represent people with TBI in their right to access services and programs free of discrimination by providing technical assistance, training, developing materials, and/or assisting with complaints.

Alaska

Disability Law Center of Alaska

PATBI Grant: $150,000

  1. Conduct self-advocacy trainings for individuals with TBI and their families.

  2. Produce a TBI addendum to the Disability Law Center’s Special Education and the Law handbook.

  3. Provide direct legal assistance to students with TBI from rural areas to obtain a free appropriate public education.

  4. Increase outreach and services to the homeless and veterans groups.

  5. Collaborate with Alaska’s statewide TBI advisory board and support groups.

Arizona

Arizona Center for Disability Law

PATBI Grant: $150,931

  1. Develop outreach materials describing P&A services for the TBI community.

  1. Provide information on the project and P&A services to organizations throughout the state.

  2. Provide information about P&A services to individuals with TBI via the Center’s website.

  3. Perform a series of outreach and training events

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Involved in Alabama’s TBI planning process.

  • Involved with University of Alabama TBI research project.

  • Reviewed 89 TBI Wyatt class cases for best practices.

  • Attended two statewide TBI conferences; held eight focus groups.

  • Collaborated on parent training and a train-the-trainer model for youth.

  • Advocated for 17 individuals with TBI in special education classes.

  • Published an article on assistive technology and TBI.

  • Involved in TBI training initiatives for law enforcement.

  • Developed and distributed TBI brochures and posters.

The Alabama Disabilities Advocacy Program will continue to provide case advocacy for individuals with TBI, education and training regarding rights of those with TBI, and outreach to individuals with TBI residing in rural areas.

  • Project staff members serve on subcommittees of Alaska’s statewide TBI advisory board.

  • Providing training to TBI support groups through the Independent Living Council.

  • Partnering with the special education service agency to develop a special education publication.

  • Conducting outreach to homeless and veterans shelters.

The Disability Law Center of Alaska will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Collaborating with Arizona’s TBI lead agency on several initiatives, including a conference in June 2003.

  • Participated in trainings for service provider staff, e.g., case managers and special education personnel.

  • Increased number of TBI calls.

The Arizona Center for Disability Law will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Alabama

around the state targeting individuals with TBI, their families, and caregivers.

  1. Co-sponsor a half-day conference on TBI in collaboration with the Arizona Governor’s Council on Spinal and Head Injury.

  2. Provide direct representation of those with TBI who experience barriers in applying for publicly funded services and obtaining employment.

Arkansas

Disability Rights Center, Inc.

PATBI Grant: $100,000

  1. Monitor the implementation of Arkansas’ Olmstead planb by attending meetings of the governor’s housing taskforce and publish information gained on the Disability Rights Center website.

  2. Collaborate with the state Department of Education and other agencies important to individuals with TBI in order to support Arkansas in its effort to receive a Federal TBI Program Implementation Grant from HRSA.

  3. Assist in developing Arkansas’ statewide TBI advisory board consisting of over 50 percent TBI survivors and family members and advise on TBI advocacy needs, outreach strategies, and service priorities.

  4. Produce and distribute two informational flyers and a public service announcement as recommended by the statewide TBI advisory board; contribute to updated general Disability Rights Center materials and newsletters; and publish in English and Spanish.

  5. Identify future legislative and public policy needs for improved access to and coordination of TBI services and supports for individuals with TBI and families.

  6. Collaborate with other organizations to share information and post proposed bills to the 2005 Arkansas General Assembly Forum on the Disability Rights Center website message board.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Over 100 individuals with TBI, their families, and service providers attended June conference. Participants requested an annual event.

  • Created an internal resource book that contains general information about TBI for the staff as well as callers.

  • Participated with Arizona’s TBI lead agency and the Brain Injury Association to identify gaps in the continuum of services and to close those gaps and develop a speakers bureau.

  • Conducted one TBI staff training session for the Disability Rights Center and took part in training at the University of Arkansas at Little Rock for staff teaching students with TBI.

  • Collaborated with the Brain Injury Association of Arkansas to presen

The Disability Rights Center is planning advocacy and outreach strategies for training medical technicians, first responders, and coaches and a public relations project utilizing Arkansas’ statewide TBI advisory board members’ stories in a press release.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

California

Protection & Advocacy, Inc.

PATBI Grant: $241,487

  1. Increase awareness in the TBI community about Protection & Advocacy, Inc.’s advocacy services and the rights of individuals with TBI in California to community-living services and supports.

  2. Develop or modify existing materials outlining available services and supports from Protection & Advocacy, Inc.

  3. Translate these materials into Spanish and one Asian language.

  4. Provide training and presentations to individuals with TBI and providers as part of the outreach effort.

  5. Provide training on disability rights to individuals with TBI who are Native American.

  6. Increase the understanding and capacity of Protection & Advocacy, Inc., to serve the TBI community.

  7. Prepare and disseminate information to Protection & Advocacy, Inc. staff and board about the TBI project.

  8. Increase the number of TBI clients served by Protection & Advocacy, Inc.

  9. Ensure participation of the TBI community in the California Olmstead planning process.

Colorado

The Legal Center for People with Disabilities

PATBI Grant: $150,000

  1. Plan, assess, and expand the Colorado P&A system’s capacity to serve people with TBI.

  2. Develop a process to prioritize issues to be addressed by Colorado’s program for P&A for individuals with TBI and their families.

  3. Enhance the Colorado P&A system’s process of and Older information and referral, and provide to people with People TBI and families.

  4. Provide self-advocacy assistance and direct legal representation to those with TBI and family members to access appropriate supports and services. 5. Implement collaborative activities to research and address systemic issues regarding access to services.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

Not available.

Protection & Advocacy, Inc. in California will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Participates on Colorado’s statewide TBI advisory board. Still working with the Colorado TBI lead agency and the Brain Injury Association affiliate to clarify where service systems are lacking.

  • Attempting to clarify priority issues: vocational rehabilitation; health/insurance/medical; mental health counseling.

  • Currently serving 14 individuals under the Federal PATBI Grant.

  • Coordinating with the Brain Injury Association of Colorado to develop a CIRCLE group in western Colorado to network service providers.

The Legal Center will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Connecticut

Connecticut Protection & Advocacy for Persons with Disabilities

PATBI Grant: $100,000

  1. Increase the Connecticut P&A system’s capacity and competence to provide protection and advocacy services for individuals with brain injuries.

  2. Develop an effective coalition of allied advocacy groups to promote relevant, accessible, consumer-responsive systems of service; sound public policy; and community support for people with brain injuries.

  3. Increase participation by members of racial and ethnic minority communities in organized advocacy efforts on behalf of people with brain injuries in Connecticut.

  4. Complete a resource guide and a comprehensive assessment of unmet service and advocacy needs.

  5. Co-host consumer focus groups with the Brain Injury Association of Connecticut, including groups representing minority communities.

  6. Develop and present information regarding needs to policy makers.

  7. Develop an interagency case referral protocol between Connecticut P&A and the Brain Injury Association of Connecticut.

  8. Co-host a 1-day statewide conference for consumers and families.

  9. Secure representation from the brain injury community on the Connecticut P&A system’s governor-appointed advisory board.

  10. Develop the Connecticut P&A system’s service priorities that reflect the needs of people with brain injury.

Delaware

Community Legal Aid Society, Inc.

PATBI Grant: $150,000

  1. Collaborate with the brain injury and policy and law committees of the State Council for Persons with Disabilities in analyzing state legislation, regulations, Medicaid waivers, and selected policies with significant effect on TBI prevention and recourse options as well as access to “safety-net” health and financial benefits.

  2. Collaborate with the State Council for Persons with Disabilities and the Governor’s Advisory Council for

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Developed relationships with the key stakeholders in brain injury in the state.

  • Membership on Connecticut’s TBI statewide advisory board.

  • Actively representing individuals with TBI.

Connecticut Protection & Advocacy for Persons with Disabilities will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Drafted and secured enactment of an airbag safety bill to deter fraud and reduce incidence of TBI due to vehicular accidents.

  • Identified TBI special education resource materials and successfully promoted $5,000 Developmental Disabilities Council grant to purchase and distribute to special educators to improve identification and programming for students with TBI.

The Community Legal Aid Society is researching a bill to raise the mandatory bicycle helmet age in Delaware from under 16 to under 18.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Delaware

Exceptional Citizens to promote the timely and valid identification of students with TBI in implementation of Senate Bill 105.

  1. Provide advocacy services to individuals with TBI facing program eligibility or significant service denials/terminations in “safety-net” health and financial public benefits contexts (e.g., Supplemental Security Income, Medicaid, and Food Stamps).

  2. Provide technical assistance to persons with TBI, families, and professionals in response to inquiries concerning service needs.

District of Columbia

University Legal Services

PATBI Grant: $100,000

  1. Promote expansion and responsiveness of the TBI service delivery systems.

  2. Inform the general public and disability community of the TBI project including its purpose and priorities.

  3. Provide systemic and individual advocacy to clients with TBI.

  4. Provide information and referral, short-term services, and legal representation.

  5. Collaborate with the Brain Injury Association of D.C.

  6. Evaluate the overall effectiveness of the TBI project through an annual Public Input Survey and Client Satisfaction Survey; gather individual client data and statistics.

Florida

Advocacy Center for Persons with Disabilities, Inc.

PATBI Grant: $154,458

  1. Provide direct advocacy to assist individuals with TBI with issues related to employment and related services and supports.

  2. Provide systemic advocacy on employment and related services and supports.

  3. Provide outreach to the TBI community (including previously underserved populations) regarding the programs and services of the Advocacy Center for Persons with Disabilities, especially in the area of employment.

  4. Conduct research and planning for future activities and initiatives regarding employment and related

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Sponsored a training session for 36 advocates, case managers, and interested persons in issues related to acquired brain injury and long-term care.

  • Successfully advocated for the state Department of Health and the Mental Retardation and Developmental Disabilities Administration to change their positions and commit to serving people with developmental disabilities (with or without mental retardation) under the Medicaid home and community-based waiver.

University Legal Services in D.C. will continue to provide outreach and education on TBI and advocate on behalf of people with TBI.

  • Completed 40 information and referral requests and worked on 16 cases involving employment and government benefits issues.

  • Conducted outreach with TBI support groups and service providers; and attended the Brain Injury Association of Florida’s annual conference.

  • Conducted initial research on the provision of mental health services to persons with TBI.

The Advocacy Center for Persons with Disabilities, Inc., in Florida continues to work in the focus areas of its Federal PATBI Grant from HRSA, as well as respond to other requests for individual advocacy as they arise.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Florida

services and supports; special education for children and youth with TBI; access to health care services; and mental health services.

Georgia

Georgia Advocacy Office, Inc.

PATBI Grant: $116,532

  1. Ensure that individuals with TBI will be safe from abuse and neglect and will be guaranteed basic personal rights in a culturally competent manner.

  2. Ensure that individuals with TBI reside in integrated community settings.

  3. Ensure that individuals with TBI and their families have increased access to advocacy skills to enable themto effectively seek and secure adequate and appropriate treatment and support.

Hawaii

Hawaii Disability Rights Center

PATBI Grant: $150,000

  1. Provide information and referral.

  2. Provide education and outreach.

  3. Provide individual and family advocacy.

  4. Provide individual and/or systemic legal representation.

  5. Provide self-advocacy coaching and assistance.

Idaho

Comprehensive Advocacy, Inc. (Co-Ad, Inc.)

PATBI Grant: $150,000

  1. Increase Co-Ad expertise in advocacy for people with TBI in Idaho.

  2. Increase Co-Ad capacity for advocacy services by expanding staff to include another full-time equivalent employee.

  3. Reserve staff time from specially trained staff in the regional office exclusively for TBI advocacy.

  4. Establish the involvement of people with TBI and their families in the development of annual priorities, objectives, and case acceptance criteria.

  5. Increase and improve information and referral materials related to TBI advocacy issues.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Hired a full-time TBI Olmstead advocate who is integrated into the Georgia Advocacy Office’s existing organizational structure.

  • Opened numerous cases this past year. One of the most complex involves a young woman with a TBI who was thought to be mute and incoherent. The project obtained equipment so that her voice might be heard, reintroduced visitation with her children, prevented termination of her parental rights in court, and helped develop a plan for her to live in the community.

The Georgia Advocacy Office will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Provided individual case advocacy for 43 individuals with TBI.

  • Provided information and referral to 72 individuals.

  • Provided training, education, and outreach to 213 groups.

  • Distributed 6,000 TBI brochures.

The Hawaii Disability Rights Center anticipates providing the following services in the upcoming year: individual case advocacy for 45 individuals with TBI; information and referral to 180 individuals; training, education, and outreach to 197 groups; and the distribution of 6,600 TBI brochures.

  • Collaborating with the Brain Injury Association of Idaho and Idaho State University’s Institute on Rural Health.

  • Developed a PATBI program brochure and informational material.

  • Integrated all aspects of the PATBI Grant into the P&A disability advocacy program.

Co-Ad will continue its collaboration with the Brain Injury Association of Idaho and Idaho State University’s Institute on Rural Health. It will monitor and refine home and community-based services provided through Medicaid waivers; develop position statements and strategies on public policy issues affecting people with TBI; and influence

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Idaho

  1. Include specific TBI issues in systemic advocacy with state agencies, the legislature, and in Olmstead compliance activities.

Illinois

Equip for Equality, Inc.

PATBI Grant: $187,123

  1. Identify some of the systemic issues uniquely affecting the Illinois community at large.

  2. Provide one-on-one advice and assistance in self-advocacy to eligible individuals with TBI through the Training Institute.

  3. Provide legal services to those who fall within the priorities of employment discrimination, guardianship rights, and abuse and neglect.

  4. Develop resource information and training in disability rights to individuals with TBI and their families.

Indiana

Indiana Protection and Advocacy Services

PATBI Grant: $106,286

  1. Assess Indiana Protection and Advocacy Services’ responsiveness to disability rights issues affecting individuals with TBI.

  2. Provide information and referral services to individuals with TBI and their families.

  3. Provide advocacy services to individuals with TBI and families to protect their rights and assist them in accessing appropriate services and supports in their communities.

  4. Increase the quality, availability, and effectiveness of educational and community-based programs designed to prevent disease and improve health and quality of life.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

system change through direct and systemic advocacy.

  • Developed a needs assessment tool in English & Spanish to better understand the needs of people with TBI in Illinois. The tool has been distributed to advisory board members and to attendees at outreach activities and trainings.

  • Developed training materials in English & Spanish for outreach activities and educational seminars to people with TBI, family members, and service providers.

  • Presented training on the Americans with Disabilities Act and TBI to numerous centers for independent living, brain injury support groups, and brain injury case management agencies across Illinois.

  • Developed a TBI webpage on Equip for Equality’s website in English and Spanish.

  • Developed a TBI project brochure.

  • Conducted research to determine the status of various TBI programs and resources in Illinois, including a previously unknown teacher’s manual from the Illinois board of education relevant to students with TBI.

Equip for Equality will continue to implement its grant objectives nd provide aadvocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Serving individuals with TBI in regards to assistive technology and education issues.

  • Developed a brochure outlining the goals of the TBI program and is also in the process of developing an informational packet to be provided to parents of school-aged individuals with TBI as their children exit from rehabilitation units and services.

  • Continue to support the Brain Injury Association of Indiana’s efforts to reorganize and solidify themselves as a legitimate, functioning agency.

Indiana continues to attempt to identify a lead state agency for procurement of additional Federal TBI Program grant monies to fund P&A activities.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Indiana

  1. Develop and implement outreach strategies to assure that Indiana P&A services will be delivered appropriately for individuals with TBI and their families.

  2. Collaborate with appropriate partners to identify and utilize relevant research-based information about service needs of individuals with TBI and “state of the art” systems development approaches to enhance TBI-related services.

Iowa

Iowa Protection and Advocacy Services, Inc.

PATBI Grant: $100,000

  1. Enhance family and provider access to information about services and supports necessary for individuals with TBI and their families.

  2. Improve the capability of Iowa’s service providers to serve children and adults with TBI, inappropriately placed in public and private residential facilities, working to ensure that they receive appropriate programming and treatment and are free from abuse and neglect.

  3. Ensure that children diagnosed with TBI shall receive a free, appropriate public education within Iowa’s public school system and be free from abuse and neglect.

  4. Ensure adults and children with TBI who are unserved/underserved experience appropriate placement, treatment, therapy, and programming.

Kansas

Kansas Advocacy & Protective Services

PATBI Grant: $100,000

  1. Advocate for rights of individuals with TBI to have adequate numbers of safe, affordable, decent, and accessible housing.

  2. Strive toward eliminating abuse, neglect, and exploitation by decreasing the use of seclusion, restraints, life-threatening injury, or deaths of persons with TBI.

  3. Promote the rights of persons with TBI by ensuring that they have knowledge of and access to appropriate community services of their choice.

  4. Promote and advocate for access to free and appropriate education under the Individuals with Disabilities Education Act.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Participated in the TBI grant-funded Iowa Brain Injury Resource Network and have gained knowledge and skill in working with individuals with TBI.

As Iowa moves toward a community-based service system, Iowa Protection and Advocacy Services will diligently and systemically advocate that persons with TBI be placed where they can receive habilitative and rehabilitative services as well as work with individuals with TBI in realizing and selecting appropriate placement and program service opportunities within community programs.

  • As a result of advocacy provided by Kansas Advocacy & Protective Services and other collaborating disability partners, the 2004 Kansas legislature increased TBI services funding by $500,000.

Kansas Advocacy & Protective Services will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Kansas

  1. Promote options to and the appropriate use of guardianship or conservatorship.

  2. Promote positive systems and policy changes that will increase the independence of Kansans with TBI and enable them to live with dignity, independence, and respect in the most integrated setting possible.

  3. Promote appropriate diversion, treatment, and discharge planning for persons with TBI who are in or entering the criminal justice system.

  4. Provide disability rights advocacy to individuals experiencing barriers in eligibility and application processes because of TBI.

  5. Educate policy makers when proposed laws or regulations impact the rights of individuals with TBI.

Kentucky Kentucky Protection & Advocacy

PATBI Grant: $150,000

  1. Educate and provide information to legislators regarding the high incidence of TBI in Kentucky.

  2. Work with the TBI consumer advocacy committee and other advocacy and education organizations to develop advocacy strategies regarding issues and policies impacting lives of people with TBI.

  3. Provide training and outreach to un/underserved, minority and refugee populations regarding rights of persons with TBI.

  4. Represent two to three persons with TBI unnecessarily institutionalized or at risk of institutionalization to ensure the most integrated setting possible for their services and living arrangements.

  5. Represent five persons whose Medicaid waiver services have been denied, reduced, changed, or terminated.

  6. Provide short-term assistance and information and referral to persons with TBI who do not meet priority for representation.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Met with consumer advocacy group. (The meeting was arranged by the Office of Family Leadership.) This group now serves as the project advisory group.

  • Working closely with the Kentucky Brain Injury Association affiliate and the Office of Family Leadership in areas such as legislative initiatives.

  • Representing seven individuals in hearings on special education, assistive technology, and Medicaid waivers.

  • Conducted self-advocacy training.

  • Presented an advocacy workshop at the state Brain Injury Association affiliate’s sponsored brain injury summit.

Kentucky Protection and Advocacy will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Louisiana

Advocacy Center

PATBI Grant: $150,000

  1. Ensure that P&A services are known to individuals with TBI and their families.

  2. Assess the needs of the TBI population and to modify P&A priorities if indicated.

  3. Identify and begin work on systems advocacy priorities for the TBI population.

  4. Foster the reactivation of a state association for TBI and foster the submission of a proposal for a state grant by Louisiana.

  5. Represent individuals with TBI in the areas of special education, abuse and neglect, and community access.

  6. Initiate outreach program to key persons in the TBI community.

  7. Design a needs assessment instrument that will be used with the outreach activities.

Maine

Disability Rights Center

PATBI Grant: $150,000

  1. Conduct outreach to Maine citizens in at least four facilities.

  2. Implement training and necessary policy, procedure, and practice changes in facilities where abuse, neglect, or personal rights violations are found.

  3. Train the staff on consumer perspectives on treatment and on rights in at least one facility.

  4. Include people with TBI in Olmstead planning to assure that individuals with TBI receive necessary supports in integrated settings.

  5. Obtain housing in an inclusive setting in the community of choice for those who are forced to enter or remain in a living situation more restrictive than what the client wants and needs.

  6. Develop sustainable, interactive workshop to train people with TBI, families, and guardians on self-advocacy skills and rights.

  7. Develop and collect state-of-the-art training materials, resource information, and information on best practices to be made available to individuals with TBI and their families.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Established a Brain Injury Alliance of Louisiana that will apply for Brain Injury Association affiliation in 2005. Toll free number operational, spring, 2005.

  • Conducted town meetings and delivered presentations on findings of the Federal TBI Program needs assessment at injury prevention and rehabilitation conferences.

  • Conducted outreach and self-advocacy trainings to underserved communities via health clinics and TBI support groups.

  • Ongoing analysis of TBI needs assessment and communication of needs to service delivery systems for improved access.

  • Expanded the numbers of persons with TBI and their families who are aware of the resources available through the P&A.

  • Developed TBI-specific information and referral resource manual.

The Advocacy Center in Louisiana will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Working on Medicaid waivers and other funding streams to expand capacity.

  • Completed several trainings for multiple audiences, including support groups, in-home service providers, hospital emergency room staff and social workers, and the long-term ombudsman program.

  • Started an Acquired Brain Injury Council (Corrections and Transportation representation) last year.

  • Currently handling several abuse and neglect cases.

The Disability Rights Center in Maine will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Maryland

Maryland Disability Law Center

PATBI Grant: $102,472

  1. Advocate for people with TBI in state psychiatric facilities and nursing facilities to promote community-based alternatives to institutionalization.

  2. Provide information and training to individuals with TBI and advocates regarding home and community-based options.

  3. Advocate for public policy changes needed to expand community options for individuals with TBI.

Massachusetts

Disability Law Center, Inc.

PATBI Grant: $104,038

  1. Establish a PATBI advisory board including seven members with TBI or family.

  2. Develop and conduct a comprehensive statewide needs assessment to update the last assessment conducted in 1998.

  3. Develop a mini-resource guide that will be mailed to every individual and agency receiving the needs assessment.

  4. Conduct, in collaboration with other organizations, six regional trainings on available services and the importance of the needs assessment for individuals with TBI and their families.

  5. Continue to provide information and referrals to individuals with TBI and their family members and to develop a mechanism for capturing information from callers.

  6. Continue to provide direct representation for individuals needing legal representation under the current system until the needs assessment is complete.

  7. Begin to explore with advisory board ways to develop a self-advocacy/peer-advocacy curriculum for the TBI community.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Helped several persons with TBI, who were charged with minor criminal offenses, found incompetent to stand trial, and kept in institutions for years without being tried (in violation of constitutional rights) obtain release and community services, and sued on behalf of similarly situated persons, while seeking necessary changes in law.

  • Succeeded in changing policies that prevented nursing facility residents with TBI (and others) from accessing needed waivers and community services.

  • Helped individuals with TBI resolve forced medication, discharge, waivers, community services, and other issues.

The Maryland Disability Law Center will continue efforts (through legislative advocacy, litigation, and otherwise) to eliminate unconstitutional confinement of persons with TBI found incompetent to stand trial but not promptly restored to competency or tried. The Maryland Disability Law Center will continue to provide community services access for those with TBI to avoid/eliminate unnecessary institutionalization.

  • Conducted five statewide needs assessments trainings for more than 500 participants in collaboration with the Massachusetts Brain Injury Association and three regional special education trainings with more than 50 participants.

  • Provided information and referral to 100+ individuals and their families in FY 2004.

  • Provided legal representation for 36 individuals.

  • Spent an additional $16,000 in unrestricted funds serving individuals with TBI.

The Disability Law Center will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Michigan

Michigan Protection and Advocacy Service, Inc.

PATBI Grant: $175,055

  1. Represent referrals when lack of services jeopardize the health and safety of the individual; person is at risk of placement in a more restrictive setting; eligibility for services is denied; and lack of person-centered discharge planning.

  2. Provide information and referral services to individuals with TBI.

  3. Provide self-advocacy training to people with TBI and families.

  4. Develop a TBI advocacy network in conjunction with the Brain Injury Association of America.

  5. Focus on the following two systemic issues: increased access to disability-related public services and discharge from congregate care facilities, both through the use of a person-centered planning process.

Minnesota

Minnesota Disability Law Center

PATBI Grant: $150,638

  1. Ensure that advocates for persons with TBI in Minnesota counties know about TBI waivers and how to access them.

  2. Work with counties, providers to foster development of services in rural, and other areas with limited or no services.

  3. Facilitate client access to appropriate services.

  4. Monitor and ensure institutional and agency compliance with the Olmstead decision.

  5. Investigate abuse and neglect issues for TBI clients, in particular inappropriate treatment plans and treatment settings.

  1. Provide outreach to communities of color about the TBI waiver and how to access services.

  1. Conduct presentations to service providers on the TBI waiver.

  2. Address specific legal issues for persons with TBI through referrals received from the Brain Injury Association of Minnesota.

  3. Work with providers, including TBI hospitals, to negotiate appropriate individual service plans.

  4. Advocate for and represent clients with TBI and families at fair hearings when TBI-waiver services are denied or delayed.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Participated in Michigan’s statewide TBI advisory board meetings.

  • Coordinated training with the Michigan lead agency for TBI. The P&A conducted several self-advocacy trainings throughout Michigan, and the lead agency for TBI has continued conducting training for select providers.

  • Increased outreach efforts throughout state.

  • Conducted training at the Michigan Brain Injury Association’s conference.

  • Developed a brochure.

  • Increased direct client representation to more than three times the number from the previous year.

The Michigan Protection and Advocacy Service will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Project staff members attend meetings of Minnesota’s statewide TBI advisory board.

  • Participate in meetings with lead state agency for TBI and regional Brain Injury Association affiliates.

  • Partnered with legal services and brain injury groups on outreach within the Latino community.

  • Served 75 clients in FY 2004; 67 new cases were opened, and 56 cases were closed.

The Minnesota Disability Law Center will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Mississippi

Mississippi Protection and Advocacy System for Developmental Disabilities, Inc.

PATBI Grant: $100,000

  1. Provide information and referral services to persons with TBI.

  2. Provide training concerning best-practices treatment and assistive technology to persons with TBI, their parents/guardians, and service providers.

  3. Handle all TBI cases for individuals within the agency’s priority areas.

  4. Identify and correct at least one systemic problem.

  5. Engage in extensive outreach efforts in order to advise persons with TBI and their family members/guardians of the services of this agency.

Missouri

Missouri Protection and Advocacy Services, Inc.

PATBI Grant: $153,925

  1. Provide information and referral services to 50 individuals with TBI and their family members and service providers per year.

  2. Provide legal-based advocacy and litigation services to 18 persons with TBI per year in the areas of special education, employment accommodations, housing, benefits, guardianship, access to community services, and other legal issues.

  3. Provide four sessions of education and training in self-advocacy to individuals with TBI and their families per year and three sessions for other professionals per year.

  4. Work collaboratively with other entities in this field to produce two manuals and one brochure during the course of this grant.

Montana

Montana Advocacy Program

PATBI Grant: $100,000

  1. Provide information, referral, and advice.

  2. Develop an informational brochure regarding the TBI P&A program.

  3. Provide individual and family advocacy.

  4. Provide legal representation.

  5. Develop self-advocacy training for individuals with TBI and their families.

Nebraska

Nebraska Advocacy Services, Inc.

PATBI Grant: $150,000

  1. Create an internal advisory structure that collaborates with Nebraska’s statewide TBI advisory board.

  2. Conduct staff and board training.

  3. Conduct information and referral on legal and

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Provided information or referral to other federal, state, or private agencies or organizations serving 33 individuals with TBI and/or their families.

  • Provided advocacy for 10 individual TBI cases.

  • Identified and addressed one systemic issue around Medicaid and power wheelchairs.

  • Trained TBI family members and service providers in at least three conferences.

  • Provided outreach to the Methodist Rehabilitation Center and other service providers for persons with TBI.

The Mississippi Protection and Advocacy System for Developmental Disabilities will continue to identify persons with TBI who are being served by this office and provide outreach services.

  • Completed training for Missouri P&A staff.

  • Provided legal and advocacy services to consumers and families.

  • Provided presentations to consumers, family members, and service providers on aspects of legal advocacy and P&A services.

  • Produced a brochure on Missouri’s PATBI Grant Program.

  • Developed a productive working relationship with all of the Federal TBI Program grantees and service providers in the state.

Missouri Protection and Advocacy Services will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Not available

The Montana Advocacy Program will continue to implement its grant objectives and advocate for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Participating on Nebraska’s statewide TBI advisory board.

  • Participating on state interagency information and referral committee convened to develop a single point of referral.

Nebraska Advocacy Services will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Nebraska

financial issues.

  1. Provide legal advocacy planning by developing the capacity of attorneys and case advocates to be able to respond to the most significant issues for those with TBI and their families.

  2. Complete comprehensive analysis of existing state and federal laws and regulations regarding TBI together with other entities.

  3. Strengthen existing network of peer and family support groups.

Nevada

Nevada Disability Advocacy and Law Center

PATBI Grant: $100,000

  1. Increase Nevada P&A system’s capacity for advocacy services.

  2. Increase Nevada P&A system’s expertise in advocacy for people with TBI.

  3. Develop outreach materials describing P&A services for the TBI community.

  4. Provide information and referral to individuals with TBI and families.

  5. Provide assistance with self-advocacy or direct advocacy to individuals with TBI and their families.

  6. Perform a series of training events around the state targeting individuals with TBI, their families, and caregivers.

  7. Provide targeted outreach to minority and underserved populations in Nevada.

New Hampshire

Disability Rights Center, Inc.

PATBI Grant: $150,000

  1. Right to choice, self-determination, and freedom from coercion and other harm such as undue control, abuse/neglect, and inappropriate restraint/seclusion.

  2. Discrimination in public services, public accommodations, and government funded services.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Hired dedicated TBI staff in March of 2005.

  • Met with representatives from various state agencies to coordinate projects.

  • Developed an in-service training on TBI for staff to increase internal capacity; is revising the training based on evaluations.

accessing services and supports to meet their needs.

Not available.

The Nevada Disability Advocacy and Law Center will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Conducted approximately 60 trainings for 500 individuals and their families.

  • Developed and implemented 5-year diversity plan.

  • Represented a class of individuals with TBI in a lawsuit against the state challenging the waitlist under the Medicaid waiver program.

  • Took the lead in collaboration with 20 organizations to reduce exclusionary practices of schools and ensure equal educational opportunities for students with disabilities.

The Disabilities Rights Center will continue to implement its grant objective and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

New Jersey

New Jersey Protection & Advocacy, Inc.

PATBI Grant: $167,640

  1. Create a blueprint for enhancing current protection and advocacy services for individuals with TBI and their families in New Jersey through a consumer-driven planning and assessment process.

  2. Identify and include individuals with TBI, their family members, and other key stakeholders for inclusion in the assessment and planning activities, such as surveys and focus groups.

  3. Conduct focus groups with individuals with TBI and their families as part of a needs assessment.

  4. Survey the brain injury community to identify additionally needed P&A services and barriers to accessing such services.

New Mexico

Protection & Advocacy System

PATBI Grant: $150,000

  1. Provide information and referral to individuals with TBI and their families.

  2. Provide assistance in or self-advocacy or direct advocacy to individuals with TBI and their families.

  3. Provide legal representation to individuals with TBI and their families.

  4. Conduct public policy advocacy to expand and improve service systems.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Provided services to 41 individuals to several more information and referral/technical assistance.

  • Completed numerous outreach/trainings for providers and Brain Injury Association New Jersey family support staff; and self-advocacy training for individuals with TBI.

  • Prepared revisions to th 1995 TBI guide/advocacy handbook; developed brochure and separate website page for TBI. Published a newsletter article on TBI and TBI Bulletin.

  • Established an advisory council for New Jersey’s Federal PATBI Grant.; working toward TBI-specific program internally.

  • Served as liaison to New Jersey’s statewide TBI advisory board.

  • Met with staff members of two state representatives in Washington, D.C., to advocate for the needs of individuals with TBI.

New Jersey Protection & Advocacy, Inc., will continue and expand outreach, education, and promotion of self-advocacy to individuals with TBI, their families, providers, and service organizations.

  • Assisted state partners with their “empowerment project” by providing training for individuals with TBI and their families.

  • Worked with the Brain Injury Association affiliate in New Mexico and New Mexico’s statewide TBI advisory board to develop and pass state legislation in 2004 to establish and fund a Medicaid home and community-based services waiverc applicable to persons with TBI. The bill was pocket vetoed by the governor in 2004. The P&A system continues to work with TBI partners to pass TBI legislation in 2005 that will meet the governor’s concerns.

  • Provided input to New Mexico’s TBI lead agency to develop a new self-directed Medicaid waiver program for TBI to assure adequacy and appropriateness to the needs of individuals with TBI.

  • Successfully resolved the majority of individual cases in which advocacy and representation were provided to individuals with TBI.

New Mexico’s Protection & Advocacy System will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

New York

New York State Commission on Quality Care for Persons with Disabilities

PATBI Grant: $169,023

  1. Ensure that individuals with TBI are afforded due process under all Medicaid home and community-based services (HCBS) waivers.

  2. Ensure that individuals with TBI receive access to comprehensive, high-quality health care services.

  3. Ensure that children with TBI receive appropriate post-rehabilitation special education services.

  4. Assist the state Department of Health in developing a comprehensive quality assurance program.

North Carolina

Governor’s Advocacy Council for Persons with Disabilities

PATBI Grant: $115,864

  1. Conduct systemic analysis and policy implementation.

  2. Inform general public and the disability community about the TBI project.

  3. Collaborate with individuals, organizations, P&A Ad hoc Subcommittee, and others to identify and develop multi-faceted solutions to the educational and community integration barriers encountered by persons with TBI by the end of the first year.

  4. Develop outreach materials for those with TBI that describe services offered by the P&A system and the legal rights of persons with TBI.

  5. Coordinate with the Brain Injury Association of North Carolina to hold focus groups with the existing 23 support groups.

  6. Implement appropriate legal and regulatory changes.

  7. Protect individuals with disabilities through age 21 with TBI and ensure a free appropriate public education in the least restrictive environment.

  8. Provide individual assistance to a minimum of 50 individuals with TBI through information and referral, advocacy, and legal services for those who fall within the project’s priorities.

  9. Enforce, monitor, and promote the rights of persons with TBI to live in an integrated community setting.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Assisted with individual appeals and has been working with the state agency that sponsors HCBS waivers to institute better due process notices.

  • Moving toward a more systemic approach to insurance problems given the number of complaints involving health insurers.

  • Distributing special education cases within the Commission’s P&A network. The Federal PATBI Program worked with the Developmental Disabilities Planning Council to fund a special education intervention program for students with TBI.

  • Assisted in the development of quality assurance measures for the Department of Health TBI waiver.

The PATBI Program will join the Brain Injury Association of New York State in training judges and attorneys regarding the needs of individuals with TBI; help people with TBI overcome barriers that interfere with access to benefits and services to which they are entitled; and continue working with the major state agencies to provide coordinated services for individuals with TBI and other correlated disabilities.

The Governor’s Advocacy Council for Persons with Disabilities (GACPD), in collaboration with the Brain Injury Association of North Carolina, has held meetings throughout North Carolina to inform citizens about the work being done through the PATBI Grant. As a result, TBI-related calls and cases coming into GACPD have increased dramatically. The statewide meetings have also given GACPD insight into the needs of North Carolina’s TBI population.

The Governor’s Advocacy Council for Persons with Disabilities is working with North Carolina’s TBI Advisory Council to shape the service delivery system for North Carolina’s TBI population.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

North Dakota

Protection and Advocacy Project

PATBI Grant: $150,000

  1. Provide information and referral services to individuals with TBI and their families.

  2. Train all disability advocates on TBI and develop a training packet for presentation at TBI support group meetings.

  3. Participate in ongoing education of TBI issues through North Dakota’s statewide TBI advisory board activities, staff meetings with stakeholders.

  4. Develop a minimum of eight additional TBI support groups in North Dakota, including one on each of the four American Indian reservations.

  5. Provide training to the TBI support groups.

  6. Present session on “advocacy” at each of the annual conferences sponsored by the Brain Injury Association North Dakota and the Indigenous Peoples Brain Injury Association.

  7. Visit the American Indian reservations.

  8. Access information on individuals with TBI who reside in long-term care facilities.

  9. Advocate for and legally represent individuals with TBI.

  10. Advocate for the state of North Dakota to pursue and implement Planning and Implementation Grants from the Federal TBI Program.

  11. Develop a plan and successfully advocate for financial support of TBI-related services.

Ohio

Ohio Legal Rights Service

PATBI Grant: $181,937

  1. Provide protection and advocacy services to students with TBI regarding identification, assessments, and individualized education plans.

  2. Investigate and review complaints of inadequate special education services provided to students with TBI and provide representation or other levels of service as appropriate.

  3. Provide information and referral about special education services and assistance available to students during the course of case management.

  4. Increase the knowledge and skills of parents, educators, other professionals, and advocates and expand planning activities with Ohio’s TBI stakeholders.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Made contact with three of the four reservations/tribal governments; have outreach activities in two.

  • Provided training/information to providers and several support groups (one advocacy case opened as a result of the latter).

  • Opened six cases under the project.

  • Was invited to attend a rehabilitation hospital discharge planning meeting.

  • Provided assistance to North Dakota’s Department of Human Services in its application to HRSA for North Dakota’s TBI Planning Grant and secured private funding to ensure match funds.

  • One staff attorney serves as member at-large on the Brain Injury Association of North Dakota Board of Directors.

The Protection and Advocacy Project in North Dakota will continue to implement the grant objectives and advocate for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Sitting on Ohio’s Housing Committee and working to reactivate the Special Education Committee.

  • Conducting seven regional meetings (three in collaboration with the Brain Injury Association affiliate) for parents on barriers and getting through them.

  • Handled 16 special education cases.

  • Assembled a statewide advisory committee to provide guidance in developing a self-advocacy document for parents of children with TBI to help guide them through the special education system. Membership includes parents and family members.

The Ohio Legal Rights Service will continue to represent students with TBI on issues specific to the receipt of an appropriate education.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Ohio

  1. Develop a self-advocacy document for parents of students with TBI that will describe student and parent rights, self-advocacy tools, and information germane to students with brain injuries.

Oklahoma

Oklahoma Disability Law Center, Inc.

PATBI Grant: $100,000

  1. Provide information and referral.

  2. Provide education and outreach.

  3. Provide individual and family advocacy.

  4. Provide individual and/or systemic legal representation.

  5. Provide self-advocacy coaching and assistance.

Oregon

Oregon Advocacy Center

PATBI Grant: $100,000

  1. Provide person- and family-directed P&A services that are responsive to TBI issues, culturally competent, and planned and implemented with involvement of persons with TBI and families.

  2. Create the internal infrastructure and staffing for the program and provide information and referral services.

  3. Advocate for preservation and restoration for state-funded health care, in-home supports, and other services.

  4. Continue litigation challenging service cuts and educate policy makers about impact of cuts to TBI-related services and supports.

  5. Develop TBI specific outreach materials and information.

  6. Conduct advocacy training for community groups and Hispanic parents group.

  7. Meet with native tribal leaders to identify TBI needs and provide effective, culturally competent P&A services to individuals with TBI and their families.

  8. Provide case advocacy for benefits, health care, in-home supports, and education matters.

  9. Collect service data and submit data and reports to HRSA as required.

  10. Evaluate program effectiveness and report results.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

Communicated with the Oklahoma Department of Health to establish a working relationship on issues related to traumatic brain injuries.

The Oklahoma Disability Law Center will continue to implement its grant objectives and provide advocacy for individuals with TBI and families in accessing services and supports to meet their needs.

Not available.

The Oregon Advocacy Center will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Oregon continued

  1. Collect and evaluate all program satisfaction indicators.

  2. Evaluate progress of systems advocacy initiatives.

Pennsylvania

Pennsylvania P&A, Inc.

PATBI Grant: $186,451

  1. Increase the availability of and timely access to services for Pennsylvanians with TBI within their own communities.

  2. Provide technical assistance and case services to individuals with TBI and, as appropriate, to their families.

  3. Provide information on rights, resources, and self-advocacy to individuals with TBI and their family members.

  4. Collaborate with other stakeholders serving the TBI population in Pennsylvania.

  5. Conduct program evaluation and report on outcomes.

Rhode Island

Rhode Island Disability Law Center, Inc.

PATBI Grant: $150,000

  1. Improve individual and family coping skills and knowledge in order to better access culturally competent and appropriate services.

  2. Improve existing provider quality and competency.

  3. Build in-state capacity for TBI-competent services not currently available.

  4. Increase the reports of ease of access to information and quality of services by at least 20 percent by the middle of the project and 50 percent by the end.

  5. Increase provider test scores on TBI training by at least 20 percent from pre- to post-test administration.

  6. Have at least one new residential and one new day habilitation service provider accredited in TBI establish practices in Rhode Island.

  7. Increase overall state funding for TBI by at least 10 percent.

  8. Demonstrate at least 80 percent of followup interviews with information-line callers resulted in appropriate information and referral.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Developed simpler language document called “Seven Steps to Success” with Community Skills Program as an aid to people who want to strengthen or start a brain injury support group.

  • Continued working with TBI stakeholders to increase awareness of TBI issues.

  • Collaborated with Dauphin County staff to support the Dauphin County Brain Injury Panel, now a vibrant gathering.

  • Recorded 92 TBI callers in the intake system this year and 14 callers the last year. Reviewed almost 50 intakes; handled 30 individual cases this year and two cases last year.

Pennsylvania P&A will continue to provide information on rights, resources, and self-advocacy to individuals with TBI, family members, and interested professionals where appropriate. Pennsylvania P&A will also collaborate with other stakeholders and external advocacy organizations to ensure inclusion of TBI service issues in all planning processes and program designs.

  • The executive director sits on Rhode Island’s statewide TBI advisory board.

  • Developing a video for individuals with TBI and their caregivers.

  • A TBI staff attorney started at .50 FTE in April.

  • Participated in the Rhode Island Brain Injury Association’s second annual conference.

The Rhode Island Disability Law Center will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

South Carolina

Protection and Advocacy for People with Disabilities

PATBI Grant: $150,000

  1. Recruit and train staff who will be managing TBI priorities.

  2. Publicize the TBI program at the P&A system through public news media, newsletters of disability organizations and agencies, and the P&A system’s own newsletter and outreach radio broadcasts.

  3. Conduct consumer focus groups within Brain Injury Association of South Carolina’s support network to identify the topics for systemic advocacy.

  4. Provide information, referral, and technical assistance services on self-advocacy to individuals with TBI.

  5. Provide advocacy and legal services related to community integration and equal access to individuals with TBI.

  6. Identify procedures and policies related to significant barriers for individuals with TBI and modify these procedures or policies through systemic advocacy.

South Dakota

South Dakota Advocacy Services

PATBI Grant: $150,000

  1. Provide information and referral services on disability-related issues as appropriate to eligible individuals and their families.

  2. Provide advice, consultation, and self-advocacy and skill development training including Partners in Policymaking to eligible individuals and their families.

  3. Provide personal and legal representation as necessary to protect the rights of eligible individuals and their families.

  4. Investigate and review disability-based complaints of inadequate service being provided to eligible individuals.

  5. Provide education, training, and outreach on the purpose and goals of the Federal PATBI Program to potential clients, collaborating entities, interested groups, and public and private providers.

Tennessee

Tennessee P&A, Inc.

PATBI Grant: $154,383

  1. Educate individuals with TBI, staff at facilities, and the general public about the rights of individuals with disabilities to be free from abuse and neglect by conducting three trainings on abuse and neglect,

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Participated in the activities of South Carolina’s leadership council and systems development committee.

  • Prevented a significant decrease in the amount of funds available to the Medicaid head and spinal cord (HASC) injury waiverd participants for home and vehicle modifications.

  • Conducted outreach, focus groups, and self-advocacy trainings at brain injury support groups, community opportunity centers, hospitals, nursing homes, and at statewide brain injury conferences.

  • Publicized the P&A system’s TBI program by publishing articles in newsletters of several disability and service provider groups and through radio broadcasts.

Protection and Advocacy for People with Disabilities in South Carolina will continue to provide advocacy and legal services related to community integration, employment, housing, and education.

  • Participated in a coalition of TBI stakeholders in developing awareness to increase and enhance state TBI services and supports.

  • Linked with the revitalized Brain Injury Association of South Dakota, rehabilitation centers, Indian reservations, brain injury support groups, and state agencies.

  • Provided information and referral services to approximately 46 people; served 10 individuals in areas such as housing, education, employment, Social Security, and guardianship.

  • Provided testimony to support a bill that would create a statewide TBI advisory board for South Dakota/TBI rehabilitation and research.

  • Disseminated ~2,300 brochures related to P&A for individuals with TBI and their families.

South Dakota Advocacy Services will continue to implement its grant objectives and advocate for individuals with TBI and their families in accessing services and supports to meet their needs.

  • Created information on specific goals and objectives of this grant that is provided to the TBI community. Created an article for the Tennessee P&A newsletter.

Tennessee P&A will continue efforts to have a P&A representative on Tennessee’s statewide TBI advisory board.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Tennessee

by providing informational materials to 200 persons in institutional settings, and by authoring four articles on abuse and neglect on any website and/or in any newsletter.

  1. Advocate for students with TBI with the goal of effecting systemic impact in two of the cases.

  2. Inform and empower persons with TBI regarding self-advocacy and the Tennessee P&A system’s services with 18 presentations, focus groups, listening sessions, information fairs, outreach, trainings, and/or collaborations; develop and and disseminate 130 family-needs surveys and resource packets of information to persons with TBI.

  3. Develop a TBI community coalition to share information and collaborate on projects concerning persons with TBI.

Texas

Advocacy, Inc.

PATBI Grant: $178,147

  1. Increase direct casework to people with TBI above the 2004 target by at least 10 percent.

  2. Focus policy efforts on informing state officials about impact of legislation and continue systemic advocacy for rehabilitative services covered under Medicaid and other state-funded services.

  3. Continue relationship with state and local organizations representing survivors of TBI, families, and brain-injury professionals.

  4. Develop relationships across the states and support education and advocacy efforts of the Texas TBI advisory board.

Utah

Disability Law Center

PATBI Grant: $150,000

  1. Receive continuous feedback from the TBI community in the needs assessment and planning process through focus groups and collaboration with the Federal TBI State Program Grant to Utah.

  2. Invite participation of individuals with TBI in the governance of the Disability Law Center.

  3. Provide high-quality information, referral, and short-term assistance services to persons with brain injury.

  4. Design a low-literacy brochure for the TBI community explaining P&A services.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Contacted all TBI service coordinators statewide and provided information on the project and services.

  • Conducted presentations for local chapters of Brain Injury Association of Tennessee to inform them of the TBI program and other Tennessee P&A programs.

  • Developed collaborative relationships with the Department of Health and the Division of Vocational Rehabilitation on TBI issues.

Advocacy, Inc., served 97 individuals with TBI P&A funds in fiscal year 2004.

Advocacy, Inc., will continue to advocate for the development and availability of additional community support services for individuals with TBI in Texas.

  • Increased TBI-related calls by over 350% (since the inception of the program).

  • The Brain Injury Association of Utah did a brown-bag sensitivity training for staff.

  • The director of the Brain Injury Association of Utah and a member of the Disability Law Center’s board of trustees conducted a Disability Law Center board training on TBI issues.

  • Conducted two legal rights trainings at Utah’s Brain Injury Association affiliate.

  • Participated at the 2004 Brain Injury Association

The Disability Law Center was a member of the planning committee for the conference of the Utah Trial Lawyers/Brain Injury Association of Utah planned for March 2005 and a member of Utah’s TBI program. The Disability Law Center was expected to conduct a focus group on March 17, 2005, with a TBI

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Utah

  1. Provide high-quality legal services using issue team structure.

  2. Conduct case finding activities at the Utah State Hospital.

  3. Conduct legislative advocacy.

  4. Increase awareness of the Disability Law Center’s services and legal rights among persons with brain injury, their families, and the legal profession.

Vermont

Vermont Protection and Advocacy, Inc.

PATBI Grant: $150,000

  1. Provide individual advocacy to obtain access to community-based services and supports for people with TBI living in residential facilities.

  2. Enhance access to comprehensive and coordinated supports and services for people with TBI and their families through system advocacy with partner agencies.

  3. Collaborate with Vermont’s State Implementation Grant awarded by HRSA from the Federal TBI Program in attainment of goals and objectives of the statewide TBI action plan, specifically by improving access to TBI services and increasing TBI expertise of vocational counselors through educational trainings.

  4. Work with state government agencies and legislature to expand services, supports, and funding available to persons with TBI.

  5. Enhance the knowledge base of individuals with TBI and their family members, service providers, and legislators about resources and provision of TBI services and supports.

Virginia

Virginia Office for Protection and Advocacy

PATBI Grant: $111,141

  1. Develop outreach materials for TBI community that describe available P&A services and legal rights of persons with TBI.

  2. Provide information on the project and available P&A services to individuals with TBI to organizations that serve this community throughout the state.

  3. Provide information about P&A services available to individuals with TBI on the website.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

of Utah’s Family and Professional Conference.

  • Conducted five focus groups.

  • Developed a new and improved TBI brochure.

support group at a local hospital.

  • Project staff members attend all meetings of Vermont’s statewide TBI advisory board and steering committee.

  • Developed a training program for individuals with TBI, their families, and a service providers.

  • Developed and published a legal resource manual.

Vermont Protection and Advocacy is scheduling trainings for individuals with TBI, family members, and service providers on legal resources for all areas of Vermont and working with the Vermont legislature and state agencies to expand services, supports, and funding available to individuals with TBI.

The Virginia Office for Protection and Advocacy has developed a partnership with the Brain Injury Association of Virginia.

The Virginia Office for Protection and Advocacy will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Virginia

  1. Perform a series of outreach and training events around the state that target individuals with TBI, families, and caregivers.

  2. Direct representation of 10 people with TBI who are experiencing barriers in accessing appropriate services. These cases will include those with dual diagnosis: TBI and bipolar disorder or TBI and mental retardation.

  3. Provide ongoing direct representation of persons with TBI and families in health care, mental health care, employment, abuse and neglect, access to community services, and education.

Washington

Washington Protection and Advocacy

PATBI Grant: $155,191

  1. Increase the number of people with TBI who have information and referrals regarding their rights and increase the number of people with TBI who receive short-term advocacy services.

  2. Increase the number of systemic or policy issues that affect people with TBI being addressed by policy makers.

  3. Increase the number of people with TBI who receive adequate mental health services in large city jail and psychiatric hospitals.

  4. Increase the number of people with TBI who receive appropriate discharge planning from a large city jail and decrease the number of people with TBI who have unnecessarily extended stays in psychiatric hospitals.

  5. Increase the number of people with TBI who receive adequate housing, mental health, and other supports in the community.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • Conducted investigation of conditions in a city jail for prisoners with developmental disabilities, mental illness, and TBI, which resulted in changes in several policies.

  • Lawsuit against state of Washington regarding inadequate discharge and funding of services for people with developmental disabilities, mental illness, and TBI.

  • Provided hundreds of people with TBI and family with information, referral and short-term advocacy services.

  • Provided People First and Self-Determination input to the statewide TBI advisory board as it created the TBI Toolkit.

  • Handled special education legal cases and conducted outreach to the special education community, and attorneys.

  • Conducted employment trainings that reached 540 people.

  • Advanced Mental Health Parity legislation.

  • Preserved funding for Healthcare for Workers with Disabilities (Medicaid Buy-In).

Washington Protection and Advocacy will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
×

State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

West Virginia

West Virginia Advocates, Inc.

PATBI Grant: $100,000

  1. Establish collaborative relationships through written memorandums of understanding with other key stakeholders.

  2. Advocate and assist with the exploration, development, and implementation of an array of services that meet the culturally diverse needs for individuals with TBI.

  3. Provide direct-advocacy services/legal representation for at least 25 individuals with TBI in accordance with established priorities and objectives.

  4. Include individuals with TBI and/or family members on the Program Advisory Council.

  5. Provide assistance in self-advocacy to persons with TBI and families.

  6. Provide outreach and education to citizens of West Virginia to increase awareness of individuals with TBI.

  7. Develop and/or adapt outreach and TBI educational tools.

  8. Conduct TBI forums in at least four geographic areas in West Virginia.

  9. Provide outreach to health care providers, social workers, individuals with TBI, and family members in rehabilitation hospitals and the two existing trauma centers in West Virginia.

Wisconsin

Wisconsin Coalition for Advocacy

PATBI Grant: $152,799

  1. Conduct effective outreach and provide high-quality information and referral and individual advocacy assistance to people with TBI and their families throughout Wisconsin.

  2. Increase the self-advocacy skills of people with TBI and their families throughout Wisconsin.

  3. Improve Wisconsin’s TBI service delivery system through legislation, policy and and impact litigation strategies.

  4. Elevate the TBI competencies of the Wisconsin Coalition for Advocacy staff, county and state employees, and others through a combination of training and materials development/dissemination.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

  • West Virginia Advocates has actively recruited individuals with TBI for membership on the West Virginia Advocates Program Advisory Council.

  • Provided direct advocacy services, community education, and referral to individuals with TBI and their guardians and/or family members.

West Virginia Advocates will continue to provide a TBI P&A program that is responsive to the needs of individuals with TBI and their families.

  • Appointed to Wisconsin’s statewide TBI advisory board.

  • Established a memorandum of understanding with the State Brain Injury Association affiliate to collaborate on conferences and referrals.

  • Conducted outreach to 21 Brain Injury Association support groups.

  • Published TBI information on the website.

  • Beginning to work with criminal justice system; also doing outreach to women’s shelters under another contract, but including information on TBI.

  • Increase in referrals—35 between January and March 2005, and 47 total in 2004.

The Wisconsin Coalition for Advocacy will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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State and State-Based P&A System for Individuals with Developmental Disabilitiesa

Federal PATBI Grant Received from HRSA Period: 9/01/2004–8/31/2006

Goals Under the Federal PATBI Grant

Wyoming

Wyoming P&A

PATBI Grant: $100,000

  1. Develop an outreach brochure describing P&A services for the TBI community.

  2. Provide information on the TBI Program to organizations statewide.

  3. Provide a series of training and outreach events around Wyoming targeting individuals with TBI, their families, and caregivers.

  4. Provide information and referral services on disability-related issues as appropriate to eligible individuals and their families who are seeking TBI program services.

  5. Provide advice, consultation, self-advocacy assistance, and legal representation as necessary to protect the rights of eligible individuals and their families to assist them in addressing disability-related issues.

NOTE: Data displayed in this table are compiled from state self-reports collected by the National Association of Head Injury Administrators (NASHIA). Programs or accomplishments reported in this table may be unique to an individual state.

aUnder the Developmental Disabilities Assistance and Bill of Rights Act (42 U.S.Code 6012), each state seeking a federal grant for protection and advocacy (P&A) services for individuals with developmental disabilities must establish a protection and advocacy system independent of service-providing agencies, to empower, protect, and advocate on behalf of persons with developmental disabilities. The Children’s Health Act of 2000 (P.L. 106-310) directed the Health Resources and Services Administration (HRSA) to make grants to state-based P&A systems to provide information, referral, and self-advocacy to individuals with TBI and their families.

bOn 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.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Accomplishments of the State-Based P&A System Under the Federal PATBI Grant

Continuing Efforts Related to P&A for Individuals with TBI and Their Families

Prepared an annual report that details all of the Wyoming’s P&A system’s accomplishments of goals 1–5.

Wyoming P&A will continue to implement its grant objectives and provide advocacy for individuals with TBI and their families in accessing services and supports to meet their needs.

cThe Medicaid home and community-based services waiver allows states 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.

dThe Medicaid head and spinal cord injury (HASC) waiver is a type of Medicaid home and community-based services waiver. Individuals served by the HASC waiver must have TBI, SCI, or a similar disability and must apply for the waiver before their 60th birthday.

SOURCE: Connors S, King A, Vaughn S. Guide to State Government Brain Injury Policies, Funding and Services. 1st ed. Bethesda, MD: NASHIA 2003; King A, Vaughn SL. Guide to State Government Brain Injury Policies, Funding and Services. 2nd edition. Bethesda, MD: NASHIA, 2005.

Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Suggested Citation:"Appendix C: State TBI Programs and Protection and Advocacy Systems: Characteristics and Accomplishments, by State ." Institute of Medicine. 2006. Evaluating the HRSA Traumatic Brain Injury Program. Washington, DC: The National Academies Press. doi: 10.17226/11600.
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Next: Appendix D: Profiles of TBI Initiatives in Seven States »
Evaluating the HRSA Traumatic Brain Injury Program Get This Book
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A traumatic brain injury (TBI)—a brain injury caused by a sudden jolt, blow, or penetrating head trauma that disrupts the function of the brain—can happen to anyone. The effects of a TBI vary from person to person, depending on the force dynamics of injury and the patient's anatomy and physiology. People with TBI-related disabilities and their family members and caregivers need comprehensive, coordinated, person-centered systems of care that attend to their changing needs long after their acute injury has been treated medically. At least 5.3 million Americans are estimated to have a TBI-related disability.

The Health Resources and Services Administration's (HRSA) TBI Program, initially authorized by the Traumatic Brain Injury Act of 1996 (P.L. 104-106) and reauthorized by the Children's Health Act of 2000 is a modest federal program with broad ambitions: a $9 million grants program aimed at motivating states to create systems improvement on behalf of persons with TBI with disabilities and their families. In 2004, the federal Office of Management and Budget (OMB) questioned the effectiveness of the HRSA TBI Program, noting that there had been no regular independent evaluations of the program's effects on TBI patients and their families.

To address these concerns, HRSA contracted with the Institute of Medicine (IOM) in the spring of 2005 to conduct a study: (1) to assess the impact of the HRSA Program on how state systems are working or failing to work in support of individuals with TBI; and (2) to advise HRSA on how it could improve the program to best serve individuals with TBI and their families. The IOM appointed an 11-member Committee on Traumatic Brain Injury to perform the study. This report presents the IOM Committee on Traumatic Brain Injury's assessment of the HRSA TBI Program's impact and recommendations for improving the program.

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