Brain Injury State Partnership Program

Brain Injury Council of Alaska logo

About the Brain Injury State Partnership Program

The overall goal of this project is to increase capacity in Alaska to provide a continuum of care for individuals with brain injury and their families across the lifespan with services which are culturally responsive, person-centered, comprehensive and coordinated.

FY22-26 Program Objectives:

  1. Facilitate cross-systems collaboration involving a variety of stakeholders to identify brain injury service needs and barriers to independent living and person-centered care, and advise the State on overall systems planning;
  2. Determine the current TBI prevalence in Alaska, as well as the current state of brain injury services, including barriers to appropriate care;
  3. Facilitate implementation of the Alaska 5-Year State Plan for Brain Injury and update annually;
  4. Facilitate stakeholder engagement, with assistance from mentor state(s), in a process to inform the design and implementation of a TBI State Registry; and
  5. Expand capacity to screen and identify Alaskans with brain injury and provide evidence-based medical care.

 

This project was supported, in part by grant number 90TBSG0022-01-00, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

Alaska Traumatic and Acquired Brain Injury (TABI) Advisory Council

  • ACL Grant & Federal Requirements

    The federal guidance for the advisory council is as follows:

    The advisory board or council provides an opportunity to ensure a variety of stakeholders participate in determining the needs of individuals with TBI, their families, and support systems. It creates structure for statewide cross-systems collaboration, which is essential for systems change work. All grantees are required to establish and/or maintain an advisory board within the lead state agency.

    TBI advisory boards or advisory councils should include the following in accordance with and in addition to the mandates of 42 U.S.C., § 300d–52, and in alignment with ACL's commitment to independent living and person-centered planning:

    • Membership that is at least 50 percent comprised of people with TBI (i.e. survivors)
    • Family members of people with TBI
    • Center for Independent Living/State Independent Living Council representation
    • Aging and Disability Resource Center representation if one exists in the state
    • Protection & Advocacy agency representation
    • Long-term care ombudsman representation
    • NIDILRR-funded TBI Model System Center representation if one exists in the state
 
Mission
To understand, educate, and advocate for the needs of all Alaskans regarding traumatic and acquired brain injury.
 
Purpose
The purpose of the Statewide TABI Advisory Council is to engage in advocacy at the state and federal level and to create a vision for Alaska’s system of supports for persons with TABI. The TABI Advisory Council will support the development of an Annual State Plan for Brain Injury as well as the development of a state TBI registry, both of which are requirements of the federal TBI State Partnership grant.
 
History
The Statewide TABI Advisory Council is a requirement of the federal TBI State Partnership grant with the Administration for Community Living (ACL). The ÀÏ°ÄÃÅÁùºÏ²Ê¿ª½±¼Ç¼ Center for Human Development is the current state grantee for the federal grant. The Alaska Brain Injury Network (ABIN) served as the statewide TABI Advisory Council since 2001, when Alaska was awarded its first federal TBI grant. ABIN became a non-profit organization in 2003. The State of Alaska Division of Senior and Disabilities Services (SDS) is the designated the lead agency for TBI in Alaska and ABIN functioned as the Advisory Council under a Memorandum of Agreement with SDS. From May 2019 to May 2020, the Advisory Council was under the purview of the Governor’s Council on Disabilities and Special Education (GCDSE) and staffed by the ÀÏ°ÄÃÅÁùºÏ²Ê¿ª½±¼Ç¼ Center for Human Development. Beginning June 2020, the TABI Advisory Council moved to the ÀÏ°ÄÃÅÁùºÏ²Ê¿ª½±¼Ç¼ Center for Human Development. The Council currently has 26 members, of which 42% are persons with brain injury or family members. The Council has a total of 21 voting members, of which 52% are persons with brain injury.
 
  • Voting Members
    Voting members include TABI survivors, family members, medical providers, and representatives of the following agencies and organizations:
     
    • Access Alaska
    • Alaska Native Tribal Health Consortium
    • Daybreak
    • Disability Law Center
    • Division of Vocational Rehabilitation
    • Fairbanks Reentry Coalition
    • Helmets on Heads
    • Katmai Eye
    • Maniilaq
    • Providence Alaska Medical Center
    • SERRC
    • Shepherd Center
    • Southcentral Foundation
    • Southeast Alaska Independent Living
    • State Long Term Care Ombudsman
    • Statewide Independent Living Council
    • Stone Soup Group
  • Non-voting Members
    Non-voting members include TABI survivors, family members, medical providers, and representatives of the following agencies and organizations:
     
    • Alaska Mental Health Trust Authority
    • Concussion Legacy Foundation
    • State of Alaska Division of Public Health, Chronic Disease Prevention & Health Promotion
    • State of Alaska Senior & Disability Services
    • ÀÏ°ÄÃÅÁùºÏ²Ê¿ª½±¼Ç¼
  • Staff
    Lucy Cordwell, ÀÏ°ÄÃÅÁùºÏ²Ê¿ª½±¼Ç¼ CHD, Brain Injury Program Coordinator/Research Professional, lkcordwell@alaska.edu
    Sondra LeClair, ÀÏ°ÄÃÅÁùºÏ²Ê¿ª½±¼Ç¼ CHD, Community Services Director; sleclai1@alaska.edu
    Patty Raymond Turner, ÀÏ°ÄÃÅÁùºÏ²Ê¿ª½±¼Ç¼ CHD, Brain Injury Council of Alaska Coordinator; paraymond@alaska.edu
 

Alaska State Plan for Brain Injury

The FY21-25 Alaska State Plan for Brain Injury was finalized in August 2020. Thank you to everyone who contributed to the plan and provided public comment.

The State Plan is a document for everyone in Alaska. There is not one agency responsible for the completion of the plan. Instead, it explains where the greatest needs for improvement are. It is designed to be used by all agencies in the state to show where they could prioritize their efforts.

The full State Plan is available for download here.

  • State Plan Introduction

    Acknowledgement

    We would like to acknowledge contributions from the TABI Advisory Council, (named the Brain Injury Council of Alaska since 2023), listening session participants, the 311 people who completed the Brain Injury Needs Assessment survey, and individuals who provided public comment. Thank you. Your contributions and responses were important to the development of this plan.

    Purpose

    The purpose of the state plan is to clearly define measurable and achievable goals for the State in order to address system challenges and to increase capacity in Alaska to provide a continuum of care for individuals with brain injury and their families across the lifespan. It is expected that these services will be culturally responsive, person-centered, comprehensive, and coordinated.

    Methodology & Data Sources

    This plan was developed by the statewide TABI Advisory Council. The Council began by defining five priority areas: a) Prevention, b) Awareness, c) Resources, d) Data, and e) Infrastructure. On May 29, 2019 ÀÏ°ÄÃÅÁùºÏ²Ê¿ª½±¼Ç¼ Center for Human Development hosted a Brain Injury Data Party to review a variety of current data regarding brain injury in Alaska and identify gaps in services. Data was shared from the TBI Legal Needs Assessment, Brain Injury Needs Assessment survey, as well as data from secondary sources. In addition to meeting monthly, the Council worked in smaller groups based on the five identified priority areas. Each group used the following steps to develop a vision, purpose, and goals for the priority area: 1) Identify strengths, opportunities, weaknesses, and threats; 2) Define vision and purpose; and 3) Identify and refine goals and activities. The final step was to combine the work from all the groups and refine the goals and activities by considering achievability and eliminating redundancies. 

  • Priority Area: Prevention

    Vision

    We will have established a strong collaboration with statewide prevention and early intervention partners to coordinate culturally responsive and inclusive education campaigns, awareness of brain injury, and prevention strategies for the most common causes of brain injury. These coordinated efforts will result in a decrease in brain injury incidence and an increase in timely early intervention for brain injury survivors to improve the quality of life for Alaskans.

    Purpose

    Awareness of brain injury and its causes will be commonplace so that individuals, families, and stakeholders will be better equipped to prevent brain injury. A sustained coordinated statewide effort among brain injury stakeholders will ensure a widespread message that is consistent with evidence surrounding brain injury prevention and early intervention.  Knowledge of the common symptoms of brain injury will allow people to recognize symptoms when it occurs so they can get help in a timely manner.

     

    Goal 1: Establish TABI Advisory Council representation on existing injury prevention and other relevant coalitions

    Year 1 Activities:
    1. Identify existing coalitions focused on injury prevention including suicide, falls, and/or overdose prevention
    2. Identify TABI Advisory Council members to represent the Council on relevant coalitions 
    3. TABI Advisory Council representative(s) coordinate with 1-2 existing coalitions to join meetings and prevention efforts
    4. Establish regular lines of communication between existing coalitions to TABI Advisory Council work
     
    Year 2-5 Activities:
    1. Identify and join 1-2 additional coalitions for collaboration
    2. Continue to coordinate outreach to identified partners
     

    Goal 2: Develop and distribute information on brain injury prevention

    Year 1-2 Activities:
    1. Identify barriers to communicating to rural communities such as lack of access to internet and cultural differences
    2. Identify existing prevention communications and how to develop partnerships with those implementing these communications
    3. Identify the mediums (e.g., social media, television, radio, print) that can be used to communicate
    4. Identify Alaska specific TABI causes and focus on those targeted prevention areas (e.g., utilizing data from the Trauma Registry or Health Facilities Data Reporting)
    5. Develop a plan for coordinated efforts towards brain injury prevention
     
    Year 2-5 Activities:
    1. Advocate for funding or pursue funding opportunities
    2. Implement plan and revise as needed
    3. Evaluate impact of communication strategies
  • Priority Area: Awareness

    Vision

    Collaborative and coordinated training and advertisements produce raised awareness across Alaskan communities, including within healthcare, employment, and schools resulting in de-stigmatization for survivors, better understanding of TABI signs, and improvements in diagnostic and treatment practices. 

    Purpose

    Increased awareness of this invisible disability, including symptoms, services and impacts of TABI on individuals and families can produce societal change by increasing empathy toward survivors, and by revealing the need to develop and connect available services to produce an accessible, person-centered continuum of care. 

    Goal 1: Increase brain injury awareness within Alaskan communities

    Year 1 Activities include:
    1. Identify target populations in collaboration with community stakeholders
    2. Consider barriers to communicating with different populations (e.g. hold focus groups)
    3. Perform environment scan of existing awareness campaigns and determine how to develop partnerships
    4. Identify potential methods of dissemination, e.g., web, social media, television, radio
    5. Determine priority information to be communicated (e.g., by utilizing findings from the Brain Injury Needs Assessment)
    6. Create awareness plan
     
    Years 2-5 Activities include:
    1. Advocate for funding or pursue funding opportunities
    2. Implement plan and revise as needed
    3. Evaluate impact of communication strategies
     

    Goal 2: Develop and expand learning opportunities for healthcare, behavioral health, and service providers

    Year 1 Activities include:
    1. Identify target audiences in collaboration with community stakeholders and with particular consideration for providers working with underserved, vulnerable, and/or at-risk populations
    2. Determine feasible number of training events
    3. Consider appropriate venues or communication methods
    4. Determine and prioritize training topics (e.g., by utilizing findings from the Brain Injury Needs Assessment)
    5. Consider potential educators
    6. Identify existing learning opportunities and potential partnerships
    7. Establish, with the Alaska Brain Injury Network, an annual brain injury conference that is routine and predictable as a way to increase learning and build partnerships across the state
    8. Continue Head Injury ECHO, consider longer-term sustainability, and incorporate brain injury into other ECHOs where appropriate
     
    Years 2-5 Activities include: 
    1. Advocate for funding or pursue funding opportunities
    2. Collaborate on Annual TABI conference
    3. Share outcomes from Head Injury ECHO and advocate for funding
    4. Evaluate impact of learning opportunities 
  • Priority Area: Resources

    Vision

    Individuals who have experienced a brain injury have information about, and access to, available direct resources and telehealth resources that will assist in their recovery and ongoing quality of life. Services are expanded and additional resources developed based upon identified gaps. 

    Purpose

    TABI survivors can receive timely and accurate information to aid in their healing and wellness. Awareness and access to TABI assessments, treatments, and community resources can allow a person-centered approach to meet each individual's physical and recovery needs inside their community. This system can adequately support survivors requiring both short- and long-term service and support.

     

    Goal 1: Develop and produce brain injury resources based on data and identified needs

    Year 1 Activities include:
    1. Perform environmental scan of current resources delivered
    2. Develop a Brain Injury Resource Guide for families and professionals to identify existing services and resources in both urban and rural health systems, including telehealth resources
    3. Determine how Brain Injury Resource Guide information would be continuously gathered and maintained
    4. Develop a structure for the Brain Injury Resource Guide including budget, staffing, procedures (e.g., where staff are housed, funding)
     
     Year 2-5 Activities include:
    1. Continue to gather data on unmet needs (e.g., from the Brain Injury Needs Assessment) to identify gaps and guide new resource development
    2. Advocate for funding or pursue funding opportunities
    3. Evaluate success of developed resources
     

    Goal 2: Expand Brain Injury Screening Clinics [1]

    Year 1 Activities include:
    1. Identify 2 new communities for rural screening clinics
    2. Identify high-risk populations, e.g., Department of Corrections, and build relationships
    3. Clarify process for verification of diagnosis
    4. Improve clinic data collection for documenting clinic outcomes
    5. Build partnerships with local providers and offer educational opportunities
    6. Consider and investigate options for telehealth screening and follow up
     
    Years 2-5 Activities include:
    1. Advocate for funding or pursue funding opportunities
    2. Continue outreach to communities across Alaska
    3. Implement plan and revise as needed
     

    Goal 3: Establish statewide brain injury screening

    Year 1 Activities include:
    1. Identify provider types and systems for incorporating screening, particularly considering providers working with underserved, vulnerable, and/or at-risk populations
    2. Establish protocols for screening based on provider type
    3. Establish methods for collecting data on screening efforts
    4. Consider methods for telehealth screening
    5. Develop plan for brain injury screening with phases for implementation
     
    Years 2-5 Activities include:
    1. Train providers on brain injury screening
    2. Collect data on screening training and implementation
    3. Implement plan and revise as needed 
     

    [1] The brain injury screening clinics have been offered by the Alaska Brain Injury Network as part of the federal grant through ÀÏ°ÄÃÅÁùºÏ²Ê¿ª½±¼Ç¼ CHD. The clinics include a pre-screening with the OSU-ID and then in person assessments with specific providers, e.g. physical therapist, speech therapist, occupational therapist, mental health counselor, optometrist. For many the end result is a verification of diagnosis that can be used to access programs like the TABI mini grant.  

  • Priority Area: Data

    Vision

    Reliable data from across Alaska that is available for an annual report on brain injury and can be used to inform a TBI registry, continued funding, resource allocation, infrastructure development, systems change and state planning efforts. 

    Purpose

    Meaningful data can be used to advocate for programs and services that benefit individuals with disabilities. Data can help determine how systems are functioning and how to make improvements. Data, like the TBI Registry, can be used to help connect people to services. Individuals and family members may also have a voice by participating in data collection like community needs assessments. 

     

    Goal 1: Establish an operational TBI registry to connect people to services as per

    Year 1 Activities include:
    1. Determine registry purpose and use (e.g. connecting people to services, supporting research/needs assessments)
    2. Determine data sources
    3. Review existing state registries for budget, staffing, etc.
    4. Create structure for registry including budget, staffing, procedures  (e.g., who has access, where is it housed, how is it funded, how to ensure HIPAA compliance, how to connect people to services)
    5. Create registry plan
     
     Years 2 - 5 Activities include:
    1. Advocate for funding or pursue funding opportunities
    2. Implement plan and revise as needed
    3. Consider addition of non-traumatic brain injuries to the registry (e.g., brain injury as a result of stroke, COVID-19, aneurysms)
     

    Goal 2: Establish an Alaska Brain Injury Data clearinghouse 

    Year 1 Activities include:
    1. Define brain injury data needs
    2. Review available data sources through state and local agencies (e.g. Vocational Rehabilitation, TABI Mini Grants, TABI Case Management)
    3. Determine location, budget, and staffing
     
    Year 2-5 Activities include:
    1. Developing timeline for annual report on brain injury
    2. Develop annual report on brain injury
    3. Add brain injury questions to Behavior Risk Factor Surveillance System (BRFSS) and Youth Risk Behavior Survey (YRBSS)
    4. Approach public health about adding brain injury specific questions to any future follow with COVID-19 survivors
  • Priority Area: Infrastructure

    Vision

    Create a plan to develop infrastructure in Alaska to support the healthcare and community rehabilitation needs of Alaskan’s recovering from brain injury and reduce the number of people being discharged home with no follow up. In addition, the TABI Advisory Council will exist in a more permanent structure as a way to stabilize state infrastructure and support advocacy. 

    Purpose

    Individuals will have access to local resources in the post-acute phase of recovery and as a result have the potential for improved outcomes. The TABI Advisory Council will develop by-laws and a means for advocating for the state plan and improved services.

     

    Goals 1: Establish permanent TABI Advisory Council

    Year 1 Activities include:
    1. Determine statutory vs. voluntary board structure and make recommendation
    2. Determine placement within state structure and make recommendation
    3. Secure funding to support a position for TABI Advisory Council work
    4. Establish sub-committees based on each priority area and including a sub-committee focused on cultural and tribal relations
    5. Create Council by-laws
     
    Year 2-5 Activities:
    1. Sustain TABI Advisory Council
     

    Goals 2: Explore development of a model for brain injury rehab in Alaska

    Year 1 Activities include:
    1. Explore models for brain rehab in Alaska
    2. Explore models that are mindful of challenges faced by rural and remote communities
    3. Make recommendations on a feasible model for the state
    4. Build collaboration and by-in from community and state programs to develop support 
     
     Years 2-5 Activities include:
    1. Conduct cost benefit analysis on in-state vs out-of-state placement for rehab services
    2. Review payors - Medicaid, private insurance, workers compensation
     

    Goal 3: Establish a TABI Waiver and/or other structured long-term support option

    Year 1 Activities include:
    1. Review waivers from other states
    2. Explore options within the Alaska system including 1115 or 1915c waivers, or Community First Choice state plan option
    3. Coordinate with behavioral health and Senior and Disabilities Services
    4. Make recommendations on feasible option for long-term support
     
    Years 2-5 Activities include:
    1. Review of costs and cost benefit analysis

Resources, Training & Data

Resources

Head Injury ECHO for providers

Training

Post-Concussion and Traumatic Brain Injury (TBI) Training Series with Amy L. Murphy, DO:

by Amy Kolarova, DO and Yevgeniya Sergeyenko, MD, MPH:

    • Training focused on brain injury as it relates to first responders. Topics covered include:
      • Concussion signs, symptoms and screening
      • What to do when symptoms overlap, e.g. alcohol induced memory loss versus post traumatic amnesia
      • Agitation management in brain injury and how this differs from other conditions  
      • How to support individuals with a history of brain injury

    • Includes tools for health care providers when working with adults or children with concussion and brain injury
    • Materials for patients about repeated head impacts and what to expect after a concussion

Data

Alaska Injury Prevention Facts: Traumatic Brain injuries in Alaska