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

• 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
  • University of Alaska Anchorage

• Staff
  Lucy Cordwell, UAA CHD, Brain Injury Program Coordinator/Research Professional, lkcordwell@alaska.edu

  Sondra LeClair, UAA CHD, Community Services Director; sleclai1@alaska.edu
  Patty Raymond Turner, UAA 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 University of Alaska Anchorage 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 UAA 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 statute 47.80.500

  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

Alaska Brain Injury Resource Locator

The Concussion Guidebook for Alaskan Patients and Caregivers

Head Injury ECHO for providers

Access Alaska

Daybreak, Inc.

Maniilaq Association

Southeast Alaska Independent Living, Inc.

Training

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

• • Post-Concussion and TBI Training Series Part 1 - Definitions of TBI, Epidemiology, Physiology, Radiologic Studies
  • Post-Concussion and TBI Training Series Part 2 - Screening Tools, Physiological Considerations in TBI
  • Post-Concussion and TBI Training Series Part 3 - Q&A

Traumatic Brain Injury 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

Traumatic Brain Injury and Concussion Materials for Health Care Providers

• • 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