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Mind Matters Spring 2007 Survivor pursues her dream By Rhonda Howard Giving up” is not an acceptable phrase for 22-year-old Logan Olson and her mom Laurie. Born with congenital heart disease, Logan survived a heart attack at age 16 that sent her into a coma, causing a brain injury. After a long rehab, Logan wanted to move on with life. Her life’s dream pre-TBI was to attend beauty school. Though her beauty and fashion sense hadn’t changed, the rest of her life had. She searched for publications with fashion tips for young women with varying disabilities, and found nothing that inspired her. In Logan’s words, “It was all stuff for old men.” That’s when she and her mom, both from Spokane, got creative. For fun, they used magazine covers for their palette, and with cut-and-paste techniques, created their own fashion magazines. Logan’s teachers in the Spokane School District encouraged her to approach the state Department of Vocational Rehabilitation for assistance in acquiring the tools she needed to create a Web site, where she could develop her dream job. The DVR counselor she spoke with during her first visit didn’t see the “feasibility” of the project, and her request was denied. “We were sometimes tired, and very discouraged, but it gave me the learning tools I needed to become a stronger advocate for my daughter,” Laurie Olson said. “I knew if I gave up, she would too, so we pressed on.” Logan and Laurie attended focus groups and transition fairs. Each time they would display Logan’s creations and ask observers to fill out questionnaires regarding their interest in what she was trying to do. At a Transition’s Conference in Ellensburg, Logan and Laurie got such strong input encouraging them to pursue the dream that they decided it was time to re-approach DVR. Seeing the pages of signatures of people interested in subscribing to Logan’s proposed publication, DVR approved a “self-employment plan” for Logan — and agreed to pay for advisory services. Kathy Reichgerdt of Venture Advisory Services in Seattle was hired to assist Logan. Referring to her as the “football coach of advisory plans,” Laurie notes that “Kathy has helped many individuals with disabilities.” The rest of the story is in the publication itself. Last November, Logan and Laurie hosted the launch party for Logan Magazine. The current issue can be seen at http://www.loganmagazine.com.   Bill makes its way to the Governor Thanks to advocacy from Washington’s brain injury survivors and their families, the Washington State Legislature passed a bill supporting those with traumatic brain injuries. As of MindMatters press time, HB 2055 was at Gov. Christine Gregoire’s desk for her signature. Two bills were introduced at the beginning of the session — one in the Senate, by Sen. Ken Jacobsen and the other in the House by Rep. Dennis Flannigan. The bill that gained final approval in the House and Senate, HB 2055, would create a Washington Traumatic Brain Injury Strategic Partnership Advisory Council that would report to the Governor, the Legislature, and the Secretary of the Department of Social and Health Services (DSHS). Through a Traumatic Brain Injury Account, funded by an additional $2 fee on all traffic infractions, DSHS may authorize spending on information and services related to a public awareness campaign, support groups, or information and referral services. It is estimated that this fund would receive $1.9 million every two years. Most of these funds would be made available to community-based organizations to provide services to meet statewide needs of TBI survivors through a request-for-proposal (RFP) process. The Council would also be asked to consider using the Department of Information Services to develop a statewide registry. The bill is officially named “The Tommy Manning Act,” after survivor Tommy Manning of Tacoma. “We really owe quite a bit to Tommy Manning and to the other survivors of Tacoma,” said BIAWA Executive Director Gene van den Bosch. “It was their persistent advocacy and passion that inspired this legislation.”   Executive Director’s Message Changing for the better During my initial visits with board members, chapter leaders and the founders of this Association, I have heard one consistent theme. Everyone is aware that our surrounding environment has changed. You, our members, expect and want the Association to change as well — in fact, you want us to proactively anticipate — and initiate — change. The Brain Injury Association of America is now 27 years old, and the Washington affiliate will be 25 years old next year. During the past quarter of a century, this Association and its national affiliate have accomplished much with the support and participation of many fine, heroic people. Yet, times have changed and they continue to change. New issues and opportunities arise, and new challenges face us as well. Even as medical technology improves, traumatic brain injuries are increasing in Washington state. More than 4,500 new cases were diagnosed in our state’s hospitals in 2004, according to the Washington State Department of Health. That’s 1,000 more cases than were reported 10 years earlier. The realities of 21st century warfare are contributing to these growing numbers. Brain injury is the signature war injury from Iraq and Afghanistan, and the number of Iraq war veterans returning with traumatic brain injuries will likely increase dramatically. An estimated one in five soldiers received brain injuries during the Korea, Vietnam, and World War II conflicts, and we know the numbers from Iraq will be larger. Thousands of veterans will return to live in Washington, and they and their families will need community-based support services. At our state Capitol, two bills were recently introduced proposing $1.9 million every two years for a Traumatic Brain Injury Account to fund community-based programs for public awareness campaigns, support groups, and information services for TBI survivors and their families. One of these bills — House Bill 2055 — is on its way to the governor for her signature. Our experiences in the Legislature highlighted another change: the increased speed of communication and decisions made by elected officials and policymakers. What took place over a week’s time 25 years ago seems to occur within minutes today. Keeping up with this fast-paced world requires us to have the technology to communicate with our stakeholders and respond to consumers, so we do not lose opportunities to provide the services that survivors and their families need. In this quickly changing environment, the Brain Injury Association of Washington must change as well — or die. Here is a short list of the changes we are making or are about to make to meet the needs of our consumers — survivors and families; solicit funding support for our programs and manage the funds with which we are entrusted in a way that most benefits survivors and their families, today and tomorrow. 1. Supporting the chapters and support groups, NOT being supported by the chapters and support groups I am told that in the past, some people perceived the state association as “taking our money” and “just asking for money.” We propose a completely different approach: Working with local support groups and regional chapters to provide services that are truly statewide. Rather than asking chapters to send the state association their funds, the state association will send most of the membership dues received within a chapter’s county to the chapter — to be used at the regional level. (Of course, a small amount will also be sent to our national affiliate, the Brain Injury Association of America.) The state association will take a similar approach with fundraising. Most of the funds raised by the state association from local or regional sources will be shared with the regional chapters. All of the funds raised by local and regional groups will remain with the local and regional groups. 2. Sharing, NOT taking Each local community and region has its own challenges and strengths. Each has its own experts on various topics related to brain injury. We are currently receiving funding and seeking funding to offer statewide training — using local and regional experts — for support groups and regional chapters. This training will be provided beyond our state’s urban areas. It will especially reach out to underserved, hard-hit Native American/tribal communities, as well as other rural/frontier areas of our state. 3. Customizing, NOT standardizing We are soliciting grants to provide greater accessibility for survivors and their families. This means we plan to use funds and volunteers to translate our informational materials into other languages — including Braille, for those who are blind. We plan to offer training that is culturally sensitive and matches the realities of each community we address. And for this, we will collaborate with other organizations and with each community’s experts. Customizing also means tailoring our relationship with each support group and chapter, recognizing that each group has a different mix of strengths and challenges. Some chapters, for example, will be more inclined to offer community education and initiate local fundraising projects. Others will be more involved in the advocacy process, or in building stronger support groups. Some chapters or groups may need assistance with conflict resolution, while others may need guidance in financial accountability. In the end, each chapter and each support group will develop a customized relationship with the BIAWA through new staff positions we are developing — a Support group coordinator and a chapter coordinator. These positions will be part time at first and we expect them to grow as new funding sources are achieved. 4. Minimizing, NOT maximizing Many non-profit organizations of the past embraced the “bigger is better” mindset. They hoped to maximize their influence through an ever-increasing square-footage of office space and number of full-time staff. Of course, office space and full-time staff are sometimes quite helpful — even necessary for certain types of services. But for our Association, a different approach seems to be advisable — at least for now. We will minimize our operations in certain ways in order to maximize our services for survivors and their families. How will we do this? We will resist the temptation to drain local and regional groups of funds to support statewide services. We will remind ourselves that support services and training are best when they happen at the local level. We will get away from providing services that are best provided at the local level and seek instead to build up, support and train local services. One of our primary jobs as a state association is to support local and regional services for survivors and their families. Consequently, we must remind ourselves that the exercise of control by the state association and its officials over local support groups and regional chapters needs to be kept to a minimum. And when such “control” is exercised, it should be done only for the sake of the survivors and families involved, and not to build structure for structure’s sake. A minimalist approach will characterize the re-emerging Brain Injury Association of Washington. We will reduce, wherever possible, our financial needs so that our limited funds may be invested in solid programs. And we will ensure that our programs are outcome-based and actually improve the system, increase public awareness, and support survivors and families lost and confused as they attempt to navigate through difficult, complicated, and fragmented community services. We must minimize our requests for information, forms, committees, compliance and more as we support local support groups and regional chapters. Is some structure necessary? Of course it is. And wisdom will mean knowing what is helpful and what is just diverting limited energy, and time and funds from more important work. Are we fully minimized yet? No, but we must get there — and as fast as possible. Looking back, looking forward After reading this, you may react in different ways. You may be apathetic. You may say to yourself, “We’ve heard all this before.” You may disagree with me. You may agree, strongly. You may be defensive because change seems threatening. You may think change is too hard, too impossible or too late. You may think we should keep on doing the “same-old, same-old” and yet expect different results. But remember, life and our world are always changing and those who want to survive — even thrive — must change as well. We may choose to change a little or change a lot. We may choose to act dramatically or do nothing at all. But whatever course we take will be costly. The question is: What costs are worthwhile? Let’s celebrate 24 years as a statewide affiliate as if we are adults — and not teenagers or children. We know the difference. An adult remembers lessons learned, looks forward to the future, and is more willing to change to meet the real demands of the day and the expected demands of tomorrow. We face new issues, new challenges and new opportunities. Let’s be willing to change and let us — together — get to work. Gene van den Bosch, Executive Director Chairman's Message: We are at a point in the organization’s development that we can actually handle more than one urgent and important project at the same time. And we are doing it well and succeeding. Many hands do make light work. BIAWA is off to a most exciting start in 2007. We are actively and vigorously pursuing legislation that could result in profound short- and long-term changes for TBI survivors in the state of Washington. Legislation that was introduced in January 2007 proposed creating a dedicated fund for TBI resources totaling approximately $160,000. The legislation has morphed into something more profound, with dedicated funds approximating $2 million. The momentum is with us. But we need to push this issue to conclusion. Our executive director and president, along with many board members and volunteers, are going full throttle on this issue. Many others are actively involved. Can you imagine what we could do with just a portion of these funds? At the same time, we are reviving our statewide presence. We have just approved policies and procedures that will allow chapters to grow in Spokane, Tacoma and Yakima. Leaders have been identified in each of these areas and they are committed to establishing viable, reliable and vibrant chapters. These leaders will be presented as nominees for inclusion on the board at the April Board meeting. We have also committed to sponsoring a significant fundraising auction/gala on Oct. 27, 2007 at the Seattle Grand Hyatt. A contract has been signed. We have a major sponsor (UBS) agreeing to underwrite $20,000 of the costs of the event. Many board members and volunteers are meeting, planning, consulting and getting the “blueprints” ready to make this a first class event. Can we do this all at the same time? The answer is simple. Yes. However, starting something is very different than completing it. We all have other commitments that require ongoing balancing of time and calendars. I am confident that our board members and volunteers are ready for action and ready for results. Thank you for all that you do. Our many hands are making work lighter, but we now need all hands. Let’s finish what we started as we have the opportunity to accomplish something truly significant for TBI survivors, their families and our community. We can and will make this a better place because of our time, dedication and efforts. Richard Adler President/Board Chairman   20 attend facilitator training workshop Twenty BIAWA facilitators and co-facilitators recently participated in a two-day training workshop led by Janet Novinger, board member and professional facilitator. The training started with an informal Friday night “meet and greet” that allowed facilitators to network; a welcome dinner; service awards for Board President Richard Adler, and retirement ceremonies for long-time facilitators Bill Nelson and Lou Nash. On Saturday, an all-day workshop focused on what is needed to run a successful support group and practicing the skills necessary to become a good facilitator. The facilitator training workshop was funded through a federal TBI Implementation Grant awarded to Washington State Department of Health and Human Services Aging and Disability Services Administration. Additional donations of time, gifts and funding were made by BIAWA volunteers and board members.   Helpline assistance expands Since the BIAWA receives virtually no “walk-in” requests for information, moving our Helpline support services to satellite home offices — each linked by phone, fax and email — allows us to actually expand our services, even as we stay within our current budget. Our current statewide toll-free number Helpline services are offered by two staff members working 30 hours per week, with call-back assistance responding to voice mail received during other hours. Janet Mott, Ph.D., is our new program director; Arlene West House is our new Helpline manager and Valerie Wootton is our new Helpline coordinator. Our expanded Helpline assistance program includes these features: 1. Information is provided primarily by telephoneso that the TBI survivor or caregiver can obtain information about rehabilitation and independent living programs, services, and resources that are appropriate. These services are soon to include a statewide toll-free Helpline service provided by trained peer mentors, graduate-level interns supervised by a rehabilitation professional, and language translation services available by appointment. 2. Telephone call-back assistance is offeredto train and empower TBI survivors and their caregivers to become more knowledgeable about — and predisposed to use — basic problem-solving and decision-making tools to properly access services, particularly those relating to employment, supported employment, and independent living. 3. Supportive materials(including updated resource directories for each region of the state, and information packets or printed “Toolkits” — planned to soon include a Native American Toolkit) offer critical information for caregivers and for professionals who provide care and critical services for TBI survivors and their caregivers. Telephone case management supports the development of the individualized plan for employment and rehabilitation. It also provides follow-up support for TBI survivors and their caregivers seeking to interact and use the services of our community partners and any other agency, organization, or professional offering services in the areas of transition and employment programs as well as rehabilitation services. We are recruiting and requesting partners and volunteers to build the following supportive groups to achieve our desired outcomes: Three advisory councils — comprised of survivors, caregivers and professionals — to provide critical perspectives for needs assessment, guidance and project evaluation, and to help program staff understand the challenges faced by a person recovering from a TBI and his or her caregivers. Ongoing routine and formal quarterly evaluationsof the project’s processes and outcomes — including input from consumers, advisors, and staff — and recognition of time-specific benchmarks, responsible parties, delays, barriers and accomplishments. Ongoing formal quarterly communicationwith professionals from state agencies, community partners, and public officials within a 35-member Washington State Traumatic Brain Injury Strategic Partnership to target resources to the areas of greatest need. The desired outcome of this demonstration project is for individuals with traumatic brain injuries and their caregivers — particularly those living in underserved tribal communities and rural areas and those with significant and severe communication challenges — to participate more effectively with professionals in meeting the vocational, independent living, and rehabilitation needs of individuals with TBI living in Washington state. The targets for this project include: Trainingall of the Association’s 20 TBI support group facilitators and three regional chapter leaders to enlist their support and assistance for this project at their own local and regional areas. Providingat least one training in each of Washington’s counties over each 12 months of this project’s 60-month period for TBI survivors and their caregivers living in that county. DistributingTBI information packets (TBI Toolkits) to the caregiver-service agencies and organizations in Washington, along with a description of this project and an invitation to participate in this project’s training sessions as trainers or as students; assisting in the distribution of further information on TBI; and referring TBI survivors and caregivers to BIAWA for telephone information and training support. 　 Support service improvements Here is an example of other improvements BIAWA has made to support services: More TBI Toolkits to be distributed: Thanks to a federal TBI grant to Washington’s Department of Social and Health Services (DSHS), the BIAWA recently received a contract to distribute 625 more TBI Toolkits and Resource Guides — basic information and resources on traumatic brain injury — throughout the state of Washington. This contract followed an earlier contract to distribute 1,400 initial Toolkits and Resource Guides in 2006. Support group training and coordination: Under a contract from DSHS, the BIAWA will be providing 200 hours of services to sustain BIAWA-affiliated support groups for survivors of traumatic brain injury and their family members within a three-month period of time, ending June 30, 2007. A BIAWA-affiliated support group is a TBI-related support group in Washington state with a group facilitator trained by the BIAWA. Valerie Wootton will serve as the association’s support group coordinator, and will provide up to 200 hours of outreach and technical assistance for BIAWA-affiliated groups through in-person contact, or will refer other BIAWA consultants as appropriate for the support groups’ needs. In addition to outreach, funds from this contract will sponsor four regional support group facilitator trainings, and will also cover information packets for support groups and family members requesting TBI information, and mailing equipment. In addition, the grant allows the purchase of audiovisual equipment for the BIAWA to lend to facilitators for use in support group meetings. Family training and helpline assistance support program in development: The BIAWA is applying for grants from federal and state sources, and is requesting donations from private foundations and individuals to initiate a statewide Family Training Program that would benefit all family members, caregivers and guardians of individuals with traumatic brain injury. The model demonstration project would use $500,000 in federal grant funding (for example, $100,000 per year) and $1,297,000 in non-federal funds over 60 months (or five years). The project would provide training and information to enable individuals with traumatic brain injuries and their caregivers to participate more effectively with professionals in meeting the vocational, independent living, and rehabilitation needs of individuals with TBI living in Washington State — with service priority and special focus on those who are: living in underserved tribal communities and rural areas; who are also low-functioning TBI and deaf or low-functioning TBI and hard of hearing; and/or are youths with TBI or parents/caregivers of youths with TBI. Training and information would be provided for residents of every county in Washington state in collaboration with local, regional, state and national partners. This project will use paid professional staff, contractual services, as well as graduate school interns and volunteers. Distribution of training and information will be sensitive to the cultures of the audience addressed and use local/regional experts with high credibility for each audience, as practical.   How you can support ‘Heroes At Home Act’ On March 29, U.S. Senator Hillary Rodham Clinton (D-NY) introduced the Heroes At Home Act of 2007, a series of initiatives to improve services and support for Armed Forces personnel with TBI and their families. Senator Susan Collins (R-ME) is an original co-sponsor. Brain Injury Association of America Honorary Spokesperson Lee Woodruff and President/CEO Susan Connors were among the invited speakers at the press event. Together they emphasized the need for public/private cooperation in the provision of post-acute care and called for increased family caregiver training and support. BIAA proudly endorses the Heroes at Home Act of 2007 as a critical step forward in meeting needs of service members with TBI. The bill contains two key provisions of interest to BIAA: Implementation of an objective, computer-based assessment protocol to measure cognitive functioning both prior to and after deployment in order to improve the screening process for TBI in soldiers deployed to Iraq and Afghanistan. Establishment of a Traumatic Brain Injury Family Caregiver Personal Care Attendant Training and Certification Program, which would train and certify family caregivers of TBI patients as personal care attendants, enabling them to provide quality care at home while also qualifying for compensation from the VA. Note that the legislation specifies that the curricula for the TBI Family Caregiver Personal Care Attendant Training and Certification Program “shall incorporate applicable standards and protocols utilized by certification programs of national brain injury care specialist organizations.” BIAA state affiliates can take two key actions to support this bill: Initiate a letter-writing campaign as soon as possible to generate short notes from brain injury advocates in your state thanking Senator Clinton for introducing this bill and for her leadership on brain injury issues. (See a sample letter, below.) Sample letter to Senator Clinton Date Senator Hillary Rodham Clinton Russell Senate Building, Suite 476 United States Senate Washington, DC 20510 Dear Senator Clinton: I am writing to express my sincere appreciation to you for introducing the “Heroes at Home Act of 2007,” and for your leadership in the Senate on brain injury issues. Your legislation represents a critical move forward in meeting the rehabilitation and emotional adjustment needs of traumatic brain injury (TBI) survivors of Operation Iraq Freedom (OIF) and Operation Enduring Freedom (OEF). Following in the footsteps of the successful passage of last year’s “Heroes at Home Act of 2006,” your introduction of this follow-up bill further demonstrates your understanding of the gravity and complexity of TBI as it is impacting so many of America’s brave young men and women serving in the Armed Forces, as well as millions of civilians. Your recognition of the critical role played by family caregivers in facilitating recovery from brain injury, and for addressing the pressing need to increase support for these caregivers by providing access to education, training and financial compensation, is also greatly appreciated. Again, thank you for your continuing leadership on brain injury issues. Sincerely, Your signature here   2. Encourage brain injury advocates to write to their senators and encourage them to cosponsor the Heroes at Home Act of 2007. (See sample letter, below.) Sample letter to your own Senator Date Senator XXXXX XXX Senate Office Building United States Senate Washington, DC 20510 Dear Senator XXXXX: I am writing to ask you to cosponsor the “Heroes at Home Act of 2007,” which represents a critical move forward in meeting the rehabilitation and emotional adjustment needs of traumatic brain injury (TBI) survivors of Operation Iraq Freedom (OIF) and Operation Enduring Freedom (OEF). This legislation was introduced by Senator Hillary Clinton (D-NY) on March 29, 2007, and is supported by the Brain Injury Association of America, Wounded Warrior Project, American Legion, National Military Families Association, Military Officers Association of America, Gold Star Mothers and Lee Woodruff, TBI caregiver and co-author with husband Bob Woodruff of the New York Times bestseller In An Instant. This legislation recognizes the critical role played by family caregivers in facilitating recovery from brain injury, and for addressing the pressing need to increase support for these caregivers by establishing a Traumatic Brain Injury Family Caregiver Personal Care Attendant Training and Certification Program. This program would train and certify family caregivers of returning soldiers with TBI as personal care attendants, enabling them to provide quality care to their loved ones at home and at the same time qualify for compensation from the VA. The “Heroes at Home Act of 2007” will also take important steps to establish a protocol for the assessment and documentation of cognitive functioning of each member of the Armed Forces both before and after deployment, including appropriate mechanisms to permit the differential diagnosis of TBI and post traumatic stress disorder (PTSD) in returning service members. There is a great need for improved diagnostic capabilities in detecting the occurrence of one or, as frequently occurs, the coexistence of both conditions. Again, as a constituent of yours, I urge you to cosponsor the “Heroes at Home Act of 2007,” to proactively address one of the most important issues related to the War on Terror, the unanticipated high incidence of traumatic brain injuries among America’s brave soldiers returning from combat. Sincerely, Your signature here 　 Shop for Cause nets dollars for BIAWA BIAWA participated for the first time this spring in Shop for the Cause, a fundraising event for non-profit organizations in the Northwest. For one month, ending on March 17, Shop for the Cause Savings Passes were sold for $5 each. BIAWA received $5 for each Savings Pass sold by BIAWA members. Thanks to Macy’s and its sponsorship, BIAWA has added $1,260 to its treasury. Special thanks go to Dana Lough for selling the most Savings Passes. Dana and Michael Lough were indeed the BIAWA ambassadors as they greeted hundreds of shoppers at Alderwood Mall and shared our newsletters with interested parties on March 10 and 17. Chairman of the Board Richard Adler was the runner-up for selling the most Savings Passes.   TBI organization support profiles: Neurology Vocational Services Unit The Department of Neurology Vocational Services Unit (NVSU) at Haborview is in its second year of a federally funded Project With Industry (PWI) grant. NVSU has a target population of clients with neurological disabilities such as TBI, epilepsy, multiple sclerosis and stroke. Through this grant, the program helps find meaningful and financially viable work for those who are unemployed and underemployed with neurological disabilities — at no cost to the client. The goals of the grant include serving 450 clients with neurological disabilities over a three-year period, and assisting 270 clients to find job placement. The Neurology Vocational Services Unit ended the first year of this grant with a 60-percent successful placement rate and an average hourly salary of $12 for 30 hours of work per week. A significant segment of the clients seek part-time work to complement Social Security subsidy. Work at the center suggests that two-thirds of clients with severe TBI can return to work with specialized interventions. The PWI grant allows clients to attend a twice-weekly job club, receive job leads screened to match their needs and abilities, and have on-going vocational advisement and follow-up. In addition to seven partner companies providing openings, the project has an incorporated employer board and a Business Advisory Council (BAC), which is building to 40 companies. Once hired, clients have access to paid co-workers as trainers and receive follow up from date of hire for one year, including quarterly dinner Career Enhancement sessions. New client referrals who would like to consider entering the program are invited to meet with an experienced vocational counselor any Tuesday morning at 10:30 a.m. If you have TBI and are seeking work, you are encouraged to come to the Pat Steel Building, 401 Broadway (corner of Broadway and Jefferson), Ste. 2088, in downtown Seattle. Please call 206-744-9130 for more information, or visit the Web site at nvsrehab.org. Pedestrian InRoads Pedestrian InRoads was founded by Andrea Okomski in 2006, two years after her teenage son was nearly killed crossing the street to catch the city bus to high school. He suffered severe traumatic brain injury and remained comatose for over three months. The organization’s mission is “to claim for each person the basic human right to walk and move freely throughout our communities without fear or pain of sudden violent loss through a traffic collision,” Okomski said. “Prevention and healing go hand in hand. Our greatest wish is that no more families suffer as we have from preventable injury. Our greatest hopes for our loved ones surviving with TBI are the same as for anyone, that they find purpose and acceptance in this life.” Pedestrian InRoads hopes to partner with BIAWA and other community organizations to build a TBI Clubhouse for the Puget Sound Area. A clubhouse is a day center run by and for TBI survivors, with minimal staff control. It is a place where survivors, friends, and family reconnect with the broader community to build a future. Clubhouses are based on the idea that work is healing. “We can build from proven successful clubhouse models like the nationally accredited Midwest Brain Injury Clubhouse,” Okomski said. “We will incorporate values of empowerment, fellowship, dignity and independence, and embrace a holistic health and wellness orientation, focusing on spirit, mind and body. And strengthen partnerships with educational and health institutions to foster greater understanding of the changing needs of survivors and families.” For more information on Pedestrian InRoads, visit www.peinroads.org. 　 Why we must support those living with TBI By Penny Condoll Ed. Note: Penny Condoll, facilitator of the Tacoma Brain Injury Support Group, wrote this article as an op-ed piece that appeared in the March 20 Tacoma News-Tribune. Living with a traumatic brain injury can be a life altering experience. Closed and open head injuries often happen in a matter of seconds, without warning and without preparation for what will come next. The seconds it took to change my life left me with short-term memory problems, difficulty organizing, planning, initiating and sequencing of tasks, irrational anger outbursts, trouble being in situations with various stimuli (overload) and seizures. My injury happened as the result of a fall in my driveway. I have no memory of the month afterward, but can vividly remember the years that followed. It has taken that long to learn new strategies to manage the requirements of being a mother, an employee and frankly, a valuable resident of Washington. My injury sidelined my career as a social worker and manager for Group Health Cooperative at St. Joseph Medical Center. After my brain injury, I was struck by the inadequacy of services and support for persons with brain injury and their families. I now volunteer as the facilitator of the local Tacoma Brain Injury Support Group. Every two weeks when we meet, I hear similar stories about the uncoordinated services, the hurdles of managing both medical and rehab services, challenges with insurances and transportation, and the frustration of trying to understand our “new” selves. Many survivors simply fall through the cracks of the state’s health care and social service safety nets because traumatic brain injuries are medical in nature but usually require support, guidance and long-term care that are underfunded and uncoordinated. However, new hope is emerging as our Legislature is finally taking notice of our plight. Our support group recently learned of an important bill that would start to address these inadequacies. HB 2055 was introduced by Rep. Dennis Flannigan (D-Tacoma) and has received strong support in the House of Representatives. It now needs to clear the Senate and Governor’s office. In a world were TBI is rarely discussed or understood, our group is excited about the chance to educate the legislature and our community. HB 2055 would create an Advisory Council to help state leaders understand the needs of those with traumatic brain injuries. It would also support the work of organizations currently providing services and support to survivors of brain injury, and it would create a public awareness campaign. Jim Kelly, a longstanding support group member, is the father and caregiver for his 40-year-old daughter, Beverly, who has a brain injury. Although his family is largely self sufficient, he has seen many others fall through the cracks because they do not have anyone to speak for them. Many are mistakenly diagnosed with something else or simply ignored by both civilian and military health systems. Instead they may be “force fitted” into mental institutions, sentenced into correction facilities or simply left to fend for themselves on the street leaving the root cause untreated. The extent of this crisis is hard to ignore. Over 100,000 Washington residents live with a disability because of a brain injury. At least 20,000 Washington residents will suffer a traumatic brain injury this year. These injuries often alter the survivor and their family’s lives forever. Vets returning from the wars in Iraq and Afghanistan have intensified the need to address the problem of brain injury in Washington. Rep. Ahern (R-Spokane) recently remarked in a House floor debate on HB 2055 that of the vets coming back from Iraq and Afghanistan “4,500 right now have one degree or another of traumatic brain injury.” Later he added, “You are all only a car wreck away from a TBI.” The Tacoma Brain Injury Support Group is celebrating Brain Injury Awareness Month this month. We are a wonderful support group that has been in existence for more than 20 years. This group meets every second and fourth Thursday of each month at TACID. It provides the opportunity to learn, make friends and feel heard by others who understand our unique challenges. We strongly support this bill and hope that others will join us to tell the legislature that it is time for a different approach to this problem. 　 BIAWA briefs Save the date: Oct. 27 fundraising auction “Unmasking the Myths of Brain Injury” is the theme of gala auction and fundraising dinner scheduled for Saturday, Oct. 27, 2007 at the Grand Hyatt Hotel in downtown Seattle. The event will include dinner and a silent and live auction, with all proceeds benefiting the BIAWA. Look for more details in the next issue of MindMatters. Next social event: ‘Spiderman’ May 19 Survivors and caregivers are invited to attend the Saturday, May 19, BIAWA social event, which includes seeing the movie “Spiderman” at the Pacific Science Center’s IMAX Theater at 4:45 p.m. and dinner at the Seattle Center Food Court. If you want to attend, email biawasocial@comcast.netor call the BIAWA office at 253-238-6085. Participants will meet at the stage in the Center House. Those running late should go directly to the Pacific Science Center ticket kiosk in the Seattle Center (not the Denny Street entrance). Cost of the movie is $7 for survivors; caregivers are free. All attendees must also pay for their own dinner at the Food Court. Anyone interested in helping with future event planning, administration and general assistance, or developing a phone tree to call people without email addresses, send an email to biawasocial@comcast.net. New chapters being formed Two new BIAWA chapters in Spokane and Tacoma are now being formed. In addition, meetings to form regional chapters are planned for Seattle and Yakima. Ashley Richards is president of the Spokane chapter-in-formation and Penny Condoll is president of the Tacoma chapter-in-formation. Caregiver conference June 4 in Tukwila “Challenges in Caregiving: Giving Care, Taking Care” is the topic of a day-long conference sponsored by the Washington State Aging and Disability Services Administration June 4. The conference runs from 9 a.m. to 4:30 p.m. at the Tukwila Community Center. Issues to be covered include techniques for managing challenging behaviors; effective ways to improve communications with family members and professionals; healthy ways to cope with emotions and stress; and legal and financial planning issues. The keynote speaker will be Donna Benton, director of the Los Angeles Caregiver Resource Center and an expert on family caregiving issues. Cost is $25 for family and volunteer caregivers and $50 for those who are agency-based. Pre-registration is required. Call 360-725-2544 or toll-free 800-422-3263 to receive a registration form by mail. 　 Support Groups: Click here for the current listing   We sincerely thank our sponsor! Improve your thinking skills Communicate Better Work on physical rehabilitation Adult day health program for adults with acquired brain injuries ages 18-59. Many funding options. www.elderhealth.org   Newsletter Archives  Winter 2004(.pdf file format)  Summer 2005(.pdf file format)  Winter 2005(.pdf file format)  Summer 2006(.pdf file format)  Fall 2006(.pdf file format)  Winter 2007(.pdf file format)