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Brain Injury Advocacy

Brain Injury Advocacy. Jill Hodges, Executive Director Alaska Brain Injury Network, Inc. Brain Institute Follow Up Teleconference January 14, 2013. Alaska Brain Injury Network, Inc. Track needs of Alaskans TBI survivors/family members are the experts.

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Brain Injury Advocacy

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  1. Brain Injury Advocacy Jill Hodges, Executive Director Alaska Brain Injury Network, Inc. Brain Institute Follow Up Teleconference January 14, 2013

  2. Alaska Brain Injury Network, Inc. • Track needs of Alaskans • TBI survivors/family members are the experts. • Make recommendations to Department of Health and Social Services and the Alaska Mental Health Trust • Bring brain injury services close to home • Prevention First! • Information and Referral • Online Resource Directory and Library Materials • Online Discussion Group • Library • Advocacy • Network of consumers, professionals, policy makers, and advocates to make systems change! ABIN Mission: Educate, plan, coordinate, and advocate on behalf of survivors of TBI and their families

  3. Purpose of a TBI Advisory Board In an instant… temporarily or for a lifetime. Life plans, Dreams, Abilities Can Change

  4. Presentation Objectives • What is advocacy? • Overview of the brain injury movement and importance of advocacy. • Draw conclusions on why there have been improvements in state brain injury systems development and why progress has taken decades. • Recognize your role in increasing awareness and legislative/administrative/regional/ community advocacy.

  5. What is advocacy? • Advocacy is defined as any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others. • How is advocacy different from lobbying? • Lobbying is only one kind of advocacy. Not all advocacy is lobbying but all lobbying is advocacy What types of activities can you think of that might be considered advocacy?

  6. What kind of activities comprise advocacy work? • Organizing: Build power at the base • Educate Legislators: Provide information on issues • Educating the Public about the Legislative Process: Introduce communities and constituencies to the legislators whose represent them • Research: Produce relevant resources that reflect the real story of your community. • Organizing events: Mobilize for your cause • Regulatory efforts: Take action at the agencies • Public education: Educate the community on the issues • Nonpartisan voter education: Inform the electorate on the issues • Nonpartisan voter mobilization: Encourage citizens to vote • Educational conferences: Gather, network, share information, and plan for the future • Training: Strategies for successful advocating • Litigation: Win in court for your cause or your community • Lobbying: Advocate for or against specific legislation. All nonprofits are permitted to lobby. 501(c)(3) public charities can engage in a generous but limited amount of lobbying. (each state has different rules on how to go about this)

  7. Brain Injury and Advocacy

  8. Be thinking… • Why is TBI a ‘Silent Epidemic’? • Why is TBI lesser known than other medical conditions? • What advocacy activities can I participate in or organize? • Share some examples of advocacy?

  9. Where do you live? All U.S. Rate**: 93 All Alaska Rate*: 92 Alaska Native Rate*: 174 * Crude rates are reported per 100,000 ** All U.S. rate for 2002-2006, per CDC. Region of Patient ResidenceNon-fatal TBI Hospitalizations in Alaska 2004-2008*

  10. Why advocate? • Alaska needs more awareness about brain injury prevention and identification. • Alaska needs more brain injury rehabilitation services. • Alaska needs community-based, long-term care services to support people with brain injuries.

  11. Nationwide Brain Injury Advocacy • Alaska is not alone! • Brain injury is happening nationwide. • More people are surviving brain injury than ever before: • Better emergency response systems and faster transportation • Improved medical technology and techniques • Safety features such as car seatbelts, child safety seats and airbags

  12. In the Beginning . . . Advocating for people with traumatic brain injury

  13. Marilyn Spivack- Mother of TBI survivor Founded “National Head Injury Foundation” in the late 70’s

  14. 1980’s- Other States • Advocates!!! • Brain Injury Association State Affiliates develop • Legislative Studies • Appointed Councils/Task Forces • Governor, State Department, Legislation

  15. 1980’s- Federal Government • 1989-Report • Establish "traumatic brain injury" as a category in reporting systems • Designate a lead Federal agency • State and local “working groups” -- Federal Interagency Task Force 1989 Report

  16. 1980-1990: Alaska (10 Years) • Virtually no awareness about traumatic brain injury • Advocacy begins with one person • Richard Warrington makes policy makers aware of the needs.

  17. 1990’s- Other States • Surveillance/Data/Registries • Trauma/EMS • Rehab & Community Services • State Appropriations • Trust Funds • Dedicated Funding • State Funded TBI Rehab Units • Expanded Existing Programs • Developmental Disabilities • Designated VR TBI Counselors • Special Education Support • Medicaid State Plan Services • Findings • Uninsured or underinsured • Unemployed • Long-term care and support needs • Family support • Challenges • Determining numbers/needs • Funding • Affects multiple agencies and programs • Workforce with expertise • Prevention • Traffic Safety Legislation • CDC Grants (Injury Control; Secondary Disability Prevention)

  18. 1990’s- Federal Government • CMS developed TBI HCBS Waiver Prototype • IDEA 1990 added TBI as disability to report • DVBIC (DVHIC) created in 1992 • Americans with Disabilities Act of 1990 • Olmstead Decision (1990) • TBI Act of 1996

  19. Federal- TBI Act of 1996 • CDC • Prevention • Data • Public Education • NIH • Research • Consensus Conference • Defined TBI • Authorized funding to HHS • Established TBI program in CDC • Created State grant program (HRSA)

  20. Federal-TBI Act of 1996 (con’t) • 1st State grant awards in 1997 • Planning • Implementation • Technical Assistance Center HRSA: • Authorized $5 million each yr. 1997-1999 for State grants • Required States to have an advisory board • State match ($1 for $2)

  21. 1990-2000: Alaska (20 Years) • Richard Warrington continues public testimony, legislative testimony, and knocking on policy maker’s door • Brain Injury Association of Alaska forms • Mid 90’s: State of Alaska, DHSS, applies for CDC grant to study traumatic brain injury rates in the Alaska Trauma Registry • Late 90’s: State of Alaska, DHSS, Division of Mental Health/DD (now DBH), applies for TBI Act funding

  22. 2000-2010: Nationally • TBI becomes the signature injury of the OIF/OEF wars • Media coverage increases • More federal funds supporting research • More recognition of concussions • Large organizations (i.e. NFL) get involved to increase awareness • More collaboration between civilian and military researchers and professionals • TBI Act Reauthorized in 2006 • More awareness of Pediatric Acquired Brain Injury (Sarah Jane Foundation founded by father)

  23. 2000-2010: Alaska (30 Years) • 2000- The Trust funds TBI advisory board • 2003- Primary seatbelt law passed • 2004- Behavioral Health screens for TBI • 2006/07- ABIN advocates for increased funding: Resource Navigation, Training • 2008/10- Funding approved for Case Management, Mini-grants, more training; booster seat/child seat legislation passed

  24. On the horizon: Nationally • Reauthorization of the TBI Act • HR 2600 PABI Plan • Healthcare Reform

  25. 2010-2020: Alaska (40 Years) • 2010- SB 219 Passes (first official SOA T/ABI Program, Registry and Targeted Case Management) • 2011- HB 15 student-athlete concussion bill passes • 2013 Session: January –April 2013 • ABIN FY14 Budget recommendations: • $300,000 Traumatic/Acquired Brain Injury Program: • Case Management for Northwest Region (serving 100 people) • $675,000 Complex Behaviors Collaborative

  26. Advocacy Created These Programs • TBI Advisory Board (ABIN) • Information and Referral • ImPACT-concussion management • TBI Training • Intro to TBI course • 8 week CEU training on Advanced Brain-Disorders, • Brain Injury Conference • Brain Institute • State T/ABI(September 2010) • TBI Program Coordinator- Christy Wallace, SDS • Longitudinal Registry- Data collection, Sharilyn Mumaw Research Analyst III • Targeted Case Management ($1.2 million) • T/ABI Case Management- Access Alaska (serves 100 people) • $200,000 Mini-grant program for people with ATBI (managed by LINKS)

  27. What are we currently advocating for? Comp Plan Goals: • Living with Dignity: People with ATBI will be productively engaged in meaningful activities throughout their communities. • Health: People with ATBI will be able to access high quality treatment, recovery and support services, as close to one's home community as possible.

  28. Chapter 3- Plan of Action “10 Year Plan for TBI in Alaska” Core Services • Services and Supports- INDIVIDUAL • Refers to the services needed to assist individuals in recovery or relearning • Systems Infrastructure- SYSTEM • Refers to the foundation and infrastructure needed to support the ‘system’. Full report: www.alaskabraininjury.net

  29. Chapter 3- Plan of ActionCore Services-Services and Supports • Information and Referral • Service Coordination (i.e. case management) • Acute and Post-Acute Rehabilitation • Children and Youth: Educational and Related Services • Vocational Rehabilitation and Employment • Long-Term Care and Ongoing Support Full report: www.alaskabraininjury.net

  30. Chapter 3- Plan of ActionCore Services-Systems Infrastructure • Public Awareness, Prevention and Advocacy • Outreach and Identification • Training and Workforce Development • Statewide Planning and Policy Coordination Full report: www.alaskabraininjury.net

  31. Statewide Brain Injury AdvocacyAdvocacy- Hope, Determination, Persistence, and Patience • The Vision: • Fewer number of Alaskans sustaining TBI • Efficient and coordinated TBI services • Recovery is maximized • Improved health, safety, social, educational and employment outcomes for individuals with TBI

  32. JC- Advocacy works!

  33. Brain Injury Traumatic/Acquired Brain Injury Program: $300,000 GF/MH • Money is in the Governor’s FY14 Budget • Send thank you letters or emails to Governor Sean Parnell • http://gov.alaska.gov/parnell/contact/email-the-governor.html • Will need advocates to provide letters and/or testimony in support of this budget increment. • From FY14 Governor’s Budget: Senior and Disabilities Services proposes to expand multiple year grants to nonprofit organizations and agencies in the Northwest Alaska region to provide person-centered, goal-oriented case management services with innovative programs/training to improve independence and vocational outcomes for people with acquired and/or traumatic brain injury (TABI). This increment will add $300.0 GF/MH to the current $300.0 baseline GF/MH. This project may emphasize special populations such as veterans and other residents living in rural areas. In addition, there are service members returning home with TBI who may be served. This increment will allow SDS to serve an additional 100 individuals, doubling the state's capacity to serve Alaskans with TBI.

  34. Complex Behaviors Collaborative $650,000 GF/MH: needs advocacy • Not in Governor’s Budget • Will need letters and/or public testimony in support of this budget increment.

  35. Advocacy Creates Resources We owe a huge thank you to all advocates!

  36. How can you get involved? • Email contact@alaskabraininjury.net to let us know you want to get involved • Request a meeting with your Senator and Representative • Call or email ABIN if you want help organizing a meeting with your legislator and/or developing talking points • Write a letter, email, or call the Governor, Mayor, or Tribal Leaders in your area • Write a letter to the editor of your local newspaper • Organize an awareness event in your community • Provide Public Testimony • ABIN • Alaska Mental Health Trust Authority • Legislative Budget Hearings • Bill Hearings • Support a consumer/client to participate in Advocacy activities

  37. Statewide Brain Injury Advocacy For More Information • Jill Hodges, ABIN – 907 274-2824 jill@alaskabraininjury.net • The Alaska Brain Injury Network www.alaskabraininjury.net

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