Washington Brain Injury Support Coalition

WABISC

History of TBI in Washington

Many Acronyms, Little Coordination

Since the 1980s, Washington State has addressed traumatic brain injuries (TBI) through programs and initiatives in the Washington Department of Social and Health Services (DSHS). A multiagency task force suggested study and training of TBI survivors and their families through a contract with the Brain Injury Association of Washington (BIAWA, at that time known as the Washington State Head Injury Foundation) and sponsored by the State Division of Vocational Rehabilitation. In addition, the task force recommended designating a TBI coordinator within each DSHS division.

In 1994, DSHS’ Aging and Adult Services Administration developed a Medicaid demonstration waiver to provide community or residential services to individuals with TBI. The waiver was not renewed but the department’s Medicaid elderly and disabled waiver was modified and expanded to meet the needs of individuals with TBI.

The University of Washington has a TBI Model System of Care funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) and an Injury Prevention Center funded by CDC. The state-initiated partnership with the TBI Model System has worked closely with researchers at the University of Washington through its HRSA grant.

Washington Protection and Advocacy (P&A) was also involved in early years. Now called Disability Rights Washington (DRW) it is part of the nation’s federally funded P&A system providing help to people with all disabilities to expand and defend their rights, including supporting self-advocacy groups and legal assistance.

Challenges of geography, multi-agency coordination and other reasons left Washington unsuccessful meeting the needs of people with brain injuries. In 2007, Washington passed a comprehensive piece of legislation to address those needs. The first Governor’s TBI Council was created and a DSHS support staff position established.

A superhero named Tommy Manning

Tommy Manning was a well-known disability rights advocate who strengthened the collective voice of all Washingtonians with brain injury. At 10 years old, he was in his family’s car on the Tacoma Narrows Bridge when a semi-truck hit the car head on. Tommy’s mother was killed and his sister’s neck broken. Tommy’s head injury left him comatose for 29 days during which he received multiple brain surgeries. After release from hospital, Tommy lived with his father in Beaverton, OR and began recovery. With significant cognitive and physical limitations, Tommy “would never be 100%” and TBI-complications continued throughout his life.

Recognizing the dire lack of resources and support for individuals with brain injury, Tommy contacted his local representative, Dennis Flannigan, a relationship which led to the signing of RCW 74.31.060 in May 2007, officially known as “The Tommy Manning Act.” At its core this legislation explicitly intended to fund brain injury support groups and community-based programs serving people living with TBI.

The act created the state’s first dedicated TBI fund (12T) sourced by a portion of fines levied on traffic violations. The legislation also created governor-appointed representation on the TBI Council to provide community input. From 2007 to 2020, the number and distribution of support groups expanded statewide.

Additionally, the state created a TBI Resource Center and conducted an annual conference for TBI survivors, caregivers and professionals. Tommy Manning’s dedication enabled thousands of other survivors and families to achieve their best lives after TBI.

RCW 74.31.060 — the Tommy Manning Act

2008-2011

Several brain injury support groups existed prior to this legislation serving local communities using donations and personal funds. With passage of TMA, many of those groups could now receive direct funding from DSHS, fulfilling the Act’s intent to expand services.

Those early groups had formed for the same reason Tommy Manning sought action—a dire need for community support for brain injured people. Washington has state-of-the-art trauma response systems and excellent rehabilitation clinics for the acute phase of brain injury. But once people leave hospital or rehab, fewer resources are there to support the chronic phase which often lasts a lifetime. This service gap negatively impacts survivors, families, and communities.

2012-2020: the BEST era

As TBI funding grew, the state issued a Request for Proposals (RFP) to administer it. Brain Energy Support Team (BEST)was awarded the contract and did so from 2012-2020 providing:

At its peak under BEST, 72 TBI support groups met each month across Washington

Groups determined their own content and purpose, and how to meet local needs connecting brain injured people with one another and with their communities. Some groups were exclusively for survivors, others included survivors and their families and friends. Many offered activity-based social connections such as outings, games, walks, etc. Other groups were more traditional, providing emotional support and shared coping resources. Education was a core component for most groups where members learned about navigating a complicated and disjointed health care system, traditional and alternative treatments and brain injury research.

In addition, funding enabled the annual TBI convention where hundreds of people gathered for education, information and socializing. For many survivors, it was the highlight of their year.

TBI Advisory Council

RCW chapter 74.31.020 created a TBI Council to advise the governor, legislature and DSHS on programs and funding to meet the diverse needs of individuals with TBI. It consisted of 25 representatives, 12 statutory positions (state agencies) and 13 governor appointments. They met in person six times a year and the public was invited to attend and participate. Each meeting reserved time for public comment and during other parts of meetings, council members commonly questioned or asked for comment from the public. When the Council moved into committees, members of the public were invited to sit in and work with those committees.

There was a sense of cooperation, communication and collaboration between DSHS staff, the TBI Council, support group facilitators and the TBI community. It was not unusual for Council members or DSHS staff to reach out directly to group facilitators with questions or information. Facilitators connected with each other and with DSHS staff and Council members.

In the year leading up to the COVID pandemic, DSHS sought to cut the use of TBI funds for community support groups. They did not value funding peer-led groups which provided opportunities to practice life skills; engage in sports, cooking, crafts and other meaningful activities; to attend supported outings in the community or nature; or to share experiences and give mutual support. There was a shift favoring professionals as the sole source of information to support groups.

While education and professional knowledge is important, the connection to people with lived experience is equally valuable. Peers sharing and modeling recovery skills is powerful. Many in the TBI community felt DSHS devalued their knowledge from lived experience; nor did DSHS understand the therapeutic value of engaging in life skills and community activities in the safe context of a peer support group.

In 2019, DSHS announced the State Brain injury Conference in 2020 would be the last one. These annual events brought hundreds of professionals, educators, people living with brain injury and their families to gather for presentations, mini-trainings, and learning about resources around the state. That 2020 conference was cancelled because of COVID and there has been no apparent interest in the TBI Council or DSHS to restore these valuable events.

COVID – Present

In 2020 just before the pandemic, DSHS ended the BEST contract and completely defunded all TBI support groups in the state. Despite monies in the 12T fund, DSHS did not reach out to find alternative ways for groups to continue such as virtual platforms or phone contacts. Suddenly abandoned, TBI survivors, their caregivers and families struggled through years of profound loneliness and isolation.

Eventually, DSHS funded online support groups through Pasadena-based “Hey Peers.” The immediate feedback from the few who attended these meetings found them frustrating, difficult to access and fraught with cognitive and sensory challenges difficult for people with brain injury.

Those able to log onto Hey Peers reported most of each meeting was a PowerPoint presentation on generic topics chosen by DSHS having little relevance to living with a brain injury.

Another frustration was facilitators who allowed only positive comments during group check-ins and dismissed participant requests to engage in supportive conversations. For example, one presentation about how to be more organized was appropriate in a workplace of neuro-typical people but when participants suggested these just don’t work with TBI, the facilitator suggested trying a little harder, they would be successful. This type of feedback is common from ill-informed friends, coworkers, providers and others who do not understand TBI. Even if well-intended, it feels dismissive.

During pandemic, the TBI Council met rarely for shorter meetings on Zoom. The public was not allowed to comment, ask questions or participate in any way. The 25-member Council was gutted; less than half the seats were filled, often by people without criteria mandated by statute. This advisory board became dominated by state agencies creating disconnection and leading to programs and spending decisions out of touch with the real needs of the TBI community. It left little or no record of proposals, discussions and spending decisions. Bylaws and procedures were adopted to discourage public participation which only furthered its disconnection. The Council did, however, change its name to the Washington Traumatic Brain Injury Strategic Partnership Advisory Council.

In early 2024, the TBI community urged legislators to require DSHS to fulfill its mandate to fund community-based support groups. Despite DSHS opposition, legislation passed out of committee but then died when staff reported to budget committee all 12T funds had been allocated to other projects and no money remained for community services. The legislature voted an additional $125,000 from the general fund directing DSHS to use for support groups. However, their delay issuing an RFP and its onerous requirements, limitations, and schedule demands resulted in the money being returned to the general fund unspent.

Although COVID was near extinction for Washington brain injury support groups, in the spirit of Tommy Manning, facilitators came together creating the Washington Brain Injury Support Coalition (WABISC), not only to support each other but to restore our state as a good and safe home for people with brain injuries.

WABISC proposed:

Moving forward with CBIRT

In the 2025 legislative session, WABISC advocacy helped secure passage of RCW 74.31 amending the Tommy Manning Act to restore funding for community based TBI support groups.

DSHS promptly “onboarded” staff and less promptly issued an RFP, more than a year later contracting with the Center on Brain Injury Research and Training (CBIRT) at the University of Oregon to design and administer the latest acronym.

WA TBI SOS

The great news is CBIRT understands brain injury unlike DSHS ever did. They listen to survivors, families, facilitators and researchers and collaborate to build (or rebuild better) a comprehensive, flexible Washington TBI System of Support of:

WABISC is fully committed to this partnership and serving the needs of Washingtonians dealing with brain injuries.

Start here @ WA TBI SOS portal