Brain Injury Advocacy

Jill Hodges, Executive Director Alaska Brain Injury Network, Inc.

Brain Institute Follow Up TeleconferenceJanuary 14, 2013

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 ReferralOnline Resource Directory

and Library MaterialsOnline Discussion GroupLibraryAdvocacyNetwork of consumers,

professionals, policy makers, and advocates to make systems change!

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ABIN Mission: Educate, plan, coordinate, and advocate on behalf of survivors of TBI and their families

Purpose of a TBI Advisory Board

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In an instant… temporarily or for

a lifetime.

Life plans, Dreams, Abilities Can

Change

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.

Presentation Objectives

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?

What is advocacy?

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)

What kind of activities comprise advocacy work?

Brain Injury and Advocacy

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?

Be thinking…

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*

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.

Why advocate?

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

Nationwide Brain Injury Advocacy

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

Marilyn Spivack- Mother of TBI survivor

Founded “National Head Injury Foundation” in the late 70’s

Advocates!!!Brain Injury Association State

Affiliates developLegislative StudiesAppointed Councils/Task Forces◦ Governor, State Department,

Legislation

1980’s- Other States

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 Force1989 Report

1980’s- Federal Government

Virtually no awareness about traumatic brain injury Advocacy begins with one person◦ Richard Warrington makes policy makers aware of the

needs.

1980-1990: Alaska (10 Years)

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)

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

1990’s- Other States

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

1990’s- Federal Government

Defined TBI Authorized

funding to HHS Established TBI

program in CDC Created State

grant program (HRSA)

CDCPreventionDataPublic Education

NIHResearchConsensus

Conference

Federal- TBI Act of 1996

HRSA: Authorized $5

million each yr. 1997-1999 for State grants

Required States to have an advisory board

State match ($1 for $2)

1st State grant awards in 1997◦ Planning◦ Implementation

Technical Assistance Center

Federal-TBI Act of 1996 (con’t)

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

1990-2000: Alaska (20 Years)

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)

2000-2010: Nationally

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

2000-2010: Alaska (30 Years)

Reauthorization of the TBI Act HR 2600 PABI Plan Healthcare Reform

On the horizon: Nationally

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

2010-2020: Alaska (40 Years)

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)

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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.

What are we currently advocating for?

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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’.

Chapter 3- Plan of Action “10 Year Plan for TBI in Alaska”

Full report: www.alaskabraininjury.net

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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

Chapter 3- Plan of ActionCore Services- Services and Supports

Full report: www.alaskabraininjury.net

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Public Awareness, Prevention and Advocacy Outreach and Identification Training and Workforce Development Statewide Planning and Policy Coordination

Chapter 3- Plan of ActionCore Services- Systems Infrastructure

Full report: www.alaskabraininjury.net

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

Statewide Brain Injury AdvocacyAdvocacy- Hope, Determination, Persistence, and Patience

JC- Advocacy works!

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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/parn

ell/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.

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.

We owe a huge thank you to all advocates!

Advocacy Creates Resources

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

How can you get involved?

For More Information Jill Hodges, ABIN – 907 274-2824

jill@alaskabraininjury.net The Alaska Brain Injury Network

www.alaskabraininjury.net

Statewide Brain Injury Advocacy