2018 BIAMI Impact Report

IMPACT STATEMENT 2 0 1 8

Cover artwork created by Cheryl Jackson, brain injury survivor

WE ALL GET BY WITH A LITTLE HELP FROM OUR FRIENDS

Our 2018 strategic planning process, approved by the Board in January of last year, made explicit what the Brain Injury Association of Michigan (BIAMI) has always held implicitly: It’s all about survivors. To that end, our staff and the Association’s members have focused single-mindedly on that objective, and it’s my privilege in this Impact Statement to highlight what we’ve done, and what we’ve achieved, in each of the six pillars of our mission: advocacy, awareness, education, prevention, research, and support.

What’s remarkable about this past year is that while in the midst of advocating to preserve the Auto No-Fault (ANF) system of care, the BIAMI was able to achieve more than ever before in terms of survivor impact in every single area of operations. While that’s indeed a credit to our staff, members, and supporters, we have no intention of resting on our laurels. Whatever challenges arise throughout 2019, new or old, we’ll be redoubling our efforts – and will continue to do so as long as survivors and their families need our support. I invite you to learn more in the following pages about what the BIAMI does and the impact we have. And I invite you, as well, to join us and lend your support to our mission of reducing the incidence and impact of brain injury however you may prefer – as a volunteer, a member, a sponsor, or a donor.

Thomas J. Constand President and CEO Brain Injury Association of Michigan

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CIVIC ENGAGEMENT DAY One of the truly extraordinary examples of BIAMI’s impact in 2018 was Civic Engagement Day. Held on March 22 in Lansing, the event was designed to teach attendees the “who, what, where, when, how and why” of advocacy — with the objectives of not just developing more knowledgeable and informed citizens, but encouraging and increasing self- advocacy among the survivor community. Attendees included survivors, their families, and caregivers, but the event was also open to professionals interested in becoming more effective advocates for themselves and those they serve. In addition to a presentation on civic engagement, attendees had the opportunity to meet legislators who sit on health- and disability-related committees, and to observe a committee meeting. In itself a remarkable achievement, what made Civic Engagement Day extraordinary is the fact that more than 250 individuals attended, representing 30 different disability and/or health-related organizations. Among the groups present for this event were the Epilepsy Foundation of Michigan, the Michigan Chapter of the Sickle Cell Disease Association of America, Disability Network, the Disability Rights Coalition, the Developmental Disabilities Council, Susan G. Komen, Michigan Paralyzed Veterans, The Arthritis Foundation, and the Michigan Chapter of the National Multiple Sclerosis Society. Planned and led by BIAMI Vice President Nichole Shotwell, Civic Engagement Day demonstrated our commitment to and leadership in Michigan’s survivor and disability forward in giving voice to the voiceless.

CAPITOL DAY Advocating for the rights of survivors and families has been, is, and will continue to be a priority for the BIAMI. During Capitol Day , for example, the BIAMI brought together representatives of the survivor and provider communities to meet directly with key Michigan legislators in their Lansing offices. While the BIAMI employs many strategies to educate and inform our state representatives about the needs of survivors, nothing is as effective as direct personal engagement. Additionally, our joint discussions with legislators have further sparked interest in increasing penalties for distracted driving, a growing cause of death and catastrophic injury. AUTO NO FAULT A significant portion of our efforts in 2018 were focused on the legislative battle to help lower Michigan’s auto insurancepremiumswhilepreserving its Auto No-Fault (ANF) system of care. We once again faced widespread opposition in the form of an extraordinary multi-front campaign funded by insurers, but supported by a number of private and public sector groups.Whether aggressively postured in the media or spoken only behind closed doors, the overarching goal of the opposition was the complete elimination of No-Fault. And with that, the willingness to return to a costly and unwieldy tort system, and a staggering lack of concern for current and future catastrophic accident survivors and their families who would be faced with an uncertain future.While a last-minute attempt to overturn no-fault was silenced during lame duck session, we knew that efforts would begin again in 2019 and worked in concert with our CPAN coalition member organizations to prepare for the battle ahead.

ADVOCACY GIVING VOICE TO THE VOICELESS

In May 2018, advocates met with their legislators on the topics of Auto No Fault and distracted driving.

2 | 2018 Impact Statement

Unmasking brain injury 2.0 The key to reducing the incidence and impact of brain injury lies, first, in making the public aware of the prevalence and potentially severe effects of traumatic brain injury (TBI). An equally important goal is informing the public, particularly key target audiences such as healthcare professionals, coaches, and school administrators, on TBI prevention strategies and tactics. While it’s unfortunate that TBI is so little known, especially compared to less common diseases and medical conditions, BIAMI has taken aggressive steps to bring brain injury to the forefront. In 2017, we initiated “Unmasking Brain Injury,” a colloborative program with Hinds Feet Farms and the Brain Injury Association of North Carolina through which often voiceless survivors are encouraged to decorate paper mache masks to express their perceptions and feelings about their injury. (To see some of the masks created, see inside cover.) The masks are then publicly displayed along with brief stories about their creators. In 2018, we developed “Unmasking Brain Injury 2.0,” in which 12 videos exploring survivor stories “behind the mask” were debuted at the BIAMI Fall Conference and in the Capitol Rotunda in March and October. community outreach Although “Unmasking Brain Injury 2.0” is impactful in bringing the physical and emotional toll of brain injury topublic consciousness,this programrepresents onlya small portionof ourawareness activities. Virtually the entire month of October is focused on awareness issues throughout the state, including lectures, presentations, film screenings, panel discussions, and more.

AWARENESS & PREVENTION BRINGING THE REALITY OF BRAIN INJURY TO THE PUBLIC

LIDS FOR KIDS

We are very proud of our long- term partnership with the Sinas Dramis Law Firm in supporting the “Lids for Kids” bike helmet giveaway

Area students had the opportunity to view BIAMI’s “Unmasking Brain Injury”display during a field trip to the Capitol.

programs and riding safety awareness efforts by the media. At the annual events held in Grand Rapids, Lansing, and Traverse City, BIAMI provides free toddler and kid bikes as giveaways, donates approximately 5oo helmets at each 2-hour events and provides volunteers to staff our booth and help fit the helmets. To date, more than 10,000 bike helmets have been given to children of all ages through this worthwhile program.

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EDUCATION REACHING OUT TO SURVIVORS, CAREGIVERS AND PROVIDERS

Conferences, focused programs and speaking engagements are just a few of the ways BIAMI helps to educate its constituents – from survivors and their families to diverse members of our provider community. FALL CONFERENCE The Annual Fall Conference, a 2-day event in Lansing, is our major educational showcase featuring nationally-known keynote speakers and scores of expert- led continuing education-accredited breakout sessions on topics of interest to attendees. In additional, the conference provides exhibition opportunities for a record 150 vendors in 2018, as well as networking, dining, and social opportunities for both survivor participants and members of the provider community. Last year, in partnership with the Michigan Disability Support Alliance (MI-DSA), our Fall Conference included a highly successful session for survivors on voting rights for people with disabilities. QUALITY OF LIFE CONFERENCE The Quality of Life Conference provides education and information of interest to survivors, families, and caregivers – ranging from stress management to post-TBI sexuality to a presentation from the Michigan Attorney General’s Office on dealing with phone and email scams. 148 survivors and professionals attended the 2018 event. LEGAL CONFERENCE The Legal Conference is a one-day event, primarily for attorneys, case managers, and related providers, that explores the complex legal issues affecting brain injury survivors and families. Last year’s intensive sessions were attended by 207 professionals.

4 | 2018 Impact Statement

The Brain Injury Association of Michigan participates in two major research centers – the Southeastern Michigan Traumatic Brain Injury System and the Ohio Valley Center for Brain Injury Prevention and Rehabilitation. BIAMI President and CEO Tom Constand serves on the Boards of both Centers, of which there are only 16 in the U.S. The Southeastern Michigan Traumatic Brain Injury System (SEMTBIS) is a program of research that studies a variety of topics related to traumatic brain injury (TBI). Since 1987, SEMTBIS studies TBI treatment, recovery, and health outcomes and in 2017, the Center received a 5-year, $2.3 million government research grant to advance its longitudinal studies. According to Robin Hanks, Ph.D., SEMTBIS project director and chief of Rehabilitation Psychology and Neuropsychology at RIM and WSU professor of Physical Medicine and Rehabilitation, “This research grant will give us an opportunity to continue our longitudinal research on the recovery from traumatic brain injury, and also allow us to conduct research on optimizing outcomes in those who care for persons with traumatic brain injury.” Day-to-day research activities are conducted at the Rehabilitation Institute of Michigan (RIM), but the project has strong ties with Wayne State University and the larger hospital network of the Detroit Medical Center. Research findings are shared with TBI survivors, families, caregivers, and health care professionals locally, nationally, and internationally. Recent projects include: Safety and Feasibility of Minocycline in the Treatment of TBI Utility of MRI Techniques in Prediction of TBI Outcome Development and Assessment of Crosswalks in the TBIMS Database Measuring Quality of Life in Traumatic Brain Injury: the Next Generation of Instruments (TBI-QOL) Sexuality after Traumatic Brain Injury: A Traumatic Brain Injury Model Systems Collaborative The Ohio Valley Center (OVC) for Brain Injury Prevention and Rehabilitation provides education and training, conducts research, and develops new programs for rehabilitation following a TBI. The OVC serves as the umbrella for TBI grant funding and research within Ohio State’s Department of Physical Medicine and Rehabilitation. Under the direction of Jennifer Bogner, Ph.D., ABPP, FACRM, current research includes: Comparative Effectiveness of Rehabilitation Interventions for Traumatic Brain Injury This project will study therapies provided during acute rehabilitation of traumatic brain injury to determine what activities, with what pragmatic characteristics, are associated with better outcomes. Comparison of Sleep Apnea Assessment Strategies to Maximize TBI Rehabilitation and Outcome This project compares different methods for detecting sleep apnea during inpatient rehabilitation for traumatic brain injury. Improving Transition from Acute to Post-Acute Care Following Traumatic Brain Injury This study compares the effectiveness of two methods for transitioning from acute to post-acute care.

RESEARCH FINDING HOPE FOR THE FUTURE OF BRAIN INJURY SURVIVORS

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Everything the BIAMI does is intended for the benefit of survivors, but nothing is closer to the heart of our mission than support. A DIRECT LINE TO HELP That support is manifest on a daily basis via our toll-free hotline, which received almost 3000 calls last year from survivors, family members and even healthcare professionals. These calls range from frantic “what do we do now?” pleas from relatives of TBI survivors just released from the hospital with no idea of “what next,” to those asking about available financial resources, legal assistance, referrals to CARF-accredited rehabilitation facilities, and questions on the availability of TBI-oriented specialized care in physical medicine, psychological support, vision, case management, and vocational, occupational, speech, physical, and other therapeutic regimes. Long-time BIAMI staffer Kathie Sell fields many of these calls and provides the kind of empathy and helpful responses unique to those with personal experience of brain injury. Additionally, during the 2018 holidays, BIAMI was pleased to assist eight survivor members and their families through our Adopt-A-Family program supported by BIAMI and our partners. COMMUNITY ENGAGEMENT While a hotline call can suffice for many informational purposes, there are times when a personal meeting is preferable. To that end, BIAMI staff meet frequently with survivors and family members. Chapters and support groups have been, since the BIAMI’s founding, a linchpin of our connection to, and bond with, survivors and families. As of December 2018, 20 chapters and support groups have been established, including two new support groups in areas not recently served. Each group provides a primary source of support, information, activities, and camaraderie for its members and attendees. For many survivors, chapters serve an even more critical purpose – they’re a lifeline to recovery, a means to re-engage in the community, and a bridge to a higher purpose. The Baba Jones story (next page) is unique, yet emblematic of what the BIAMI and its chapters and support groups make possible.

SUPPORT FOR SURVIVORS AND THEIR FAMILIES

Survivors and their families enjoy a Detroit Tigers baseball game, one of many regular activities organized by the Brain Injury Association of Michigan.

6 | 2018 Impact Statement

THE JOURNEY OF BABA JONES SURVIVOR AND RESPECTED ADVOCATE

A fter surviving a serious motor vehicle accident in 2005, Baxter “Baba” Jones’ life was changed forever. The crash resulted in severe physical and mental injuries as well as lasting impacts including traumatic brain injury, spinal cord damage, neuropathy, blackout episodes, and reliance on a wheelchair for mobility. Prior to the accident, Baba’s passion was rooted firmly in the world of athletics and outdoor adventure – not only as an avid athlete himself, but as a physical education teacher in the Detroit Public Schools and coach for USA and AAU Junior Olympic Track and Field teams. Given his commitment to an active, athletic lifestyle, it’s hardly surprising that after his injuries, Baba became reclusive and susceptible to anger, blame, shame, pity, depression, loneliness, and difficulty in accepting his new reality. That negativity, in turn, affected the progress of his rehabilitation therapy. Fortunately, with the help of his doctors and loved ones, Baba began to adjust to his new lifestyle and decided to try and return to teaching – a process which didn’t end well after two years of diligent effort. Not just one, but three unexpected transfers between schools stressed his ability to cope and his job was eventually terminated under the state government-imposed Emergency Financial Management process. As a result, Baba was stripped of his earned seniority, and most importantly, lost the only job-related medical insurance benefits on which he could depend. That experience underscored Baba’s status as a Person With Disabilities (PWD), and with that status, the harsh realities of ableism, inequity, and discrimination – challenges that in his view parallel the inhumanity of racism. The specifics include his being refused reasonable

accommodations by his employer, denied representation by the teacher’s union, and a complete lack of protection by any governmental “safety net” law, policy, or organization such as Family and Medical Leave Act or Equal Employment Opportunity Commission.

Survivor Baxter “Baba” Jones (L) is pictured with BIAMI President and CEO Tom Constand.

The ensuing downward spiral left him with no income, no insurance, the inability to pay bills, mortgage foreclosure, and a resulting loss of possessions and assets, and even temporary homelessness. Worse, every plea for help seemingly went unanswered. After applying for Social Security benefits, Baba began receiving Social Security Disability and Medicaid insurance by the end of 2011 and Medicare benefits by the end of 2013. With some of his financial and medical burden eased, he was able to focus on learning how to reinvent himself — thanks in part to the community of activists and advocates who rallied around him, his medical caregivers, the Detroit Chapter and statewide support team of BIAMI, and current caregiver Peggy Hong. Baba now serves as Co-Vice President of the Detroit Chapter of BIAMI and Vice Chair of the Michigan Democratic Party Disability Caucus. He remains a respected activist locally, regionally, and nationally, and is proud to be a Brain Injury Survivor.

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BIAMI BOARD OF DIRECTORS 2018-2019

OFFICERS Martha Nield Board Chairperson Kevin Arnold Immed. Past Chairperson Erica Coulston Vice Chairperson Bethany Agauas Treasurer Thomas Sinas, Esq. Secretary Board Members Cheryl Angelelli Roderick Arnold Saundra Gay Tammy Hannah Jeffrey Hoover, Esq. Linda Michaels Gruber Sheila Perlman Colleen Rapson Heidi Reyst, Ph.D. Jack Richert George Sinas, Esq. Phillip Weaver Joyce Wright Marty Zobrovitz Tom Judd MBIPC Representative Tom Constand BIAMI President & CEO

MEET THE STAFF OF THE BRAIN INJURY ASSOCIATION OF MICHIGAN

(Listed in alphabetical order)

THOMAS J. CONSTAND President and CEO

DIANE DUGAN Program Outreach Coordinator

LINDSAY FLOOD Event Coordinator

JACEY PRINCE Administrative Assistant and Board Liaison

SHARON SCHANNAULT Officer Manager and Bookkeeper

NATHANIEL SMITH Communications Associate

ALEXANDRA WESTON Program Coordinator

JANNA WILSON Director of Marketing and Communications

KATHIE SELL Information and Resources Coordinator

NICHOLE SHOTWELL Vice President of Programs and Operations

8 | 2018 Impact Statement

2018 IN REVIEW

SOME FACTS

AND FIGURES

CONFERENCE ATTENDANCE The 2018 Fall Conference attracted more than 1,700 attendees and 150 exhibitors during the 2-day event in Lansing. BIAMI”s Fall Conference is the largest one of its kind in the U.S. MEETINGS & SOCIAL EVENTS Last year, BIAMI chapter meetings, support groups, and planned social and recreational events afforded almost 4000 unique opportunities for survivors, their families, and professionals. NUMBER OF CALLS In 2018, the BIAMI received more than 2,000 calls from survivors, family members, providers, and others requesting assistance with matters relating to brain injury.

MEMBERSHIPS As of December 2018, BIAMI boasted more than 1,091 memberships, including 426 corporate memberships and 665 individual memberships. SOCIAL MEDIA FACTS At the end of last year, BIAMI’s consistent social media presence had resulted in 7,862 Facebook followers; 305,100 impressions on Twitter, and 845 views on YouTube. FUNDRAISING In 2018, BIAMI held four major fundraising events, yielding approximately $418,800 in revenue.

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2 0 1 8 BRAIN INJURY ASSOCIATION of michigan TOTAL REVENUE, EXPENSES & NET ASSETS

1,200,000

 2018  2017  2016  2015

1,000,000

800,000

600,000

400,000

200,000

0

NET REVENUE

TOTAL EXPENSES

TOTAL ASSESTS

10 | 2018 Impact Statement

2 0 1 8 BRAIN INJURY ASSOCIATION of michigan functional expenses

 Other operating expenses | 34%  salaries | 34%  conferences & meetings | 17%  marketing & advertising | 4%  occupancy | 3.5%  employee benefits | 3%  payroll taxes | 3%  printing and publications | 1.5%

 program services | 80%  fundraising | 10%  management & general | 10%

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2 0 1 8 BRAIN INJURY ASSOCIATION of michigan support and revenue

 Program Service Fees | 49%  fundraising events | 37%

 contributions | 7%  membership fees | 6%

 other income | .75%  grants & united way | .25%

12 | 2018 Impact Statement

Kathi & David Colpaert Lisa & John Cornack Erica Coulston Pam & Michael Dabbs Brad Darooge Barbara & Gerald Distelrath Diane & Skip Dmytryshyn Debra & John Dorr East Muskegon Roofing and Sheet Metal Co Elaine & Mel Erdos John Freeman Patricia Gaston Kathy Gaydos Dr. Marlana J. Geha Denis Glaspie Heather Glazer Goodwill Industries of Mid-Michigan Inc. Kathy & Dan Green Rochelle Greenberg Julie Gronek Stephanie Guzak Sharon & Lamar Hankamp Tammy Hannah Linda & Steven Harwood Susan Henderson Brandon Hewitt Cathy Higgs Jordan Hodges Anne & Kevin Housemeyer Victor Huddas Sandy Hudson The Huskinson Family Greg Jones Dr. Denyce Kerner Amy & Charles Kerschbaum J.M. Eridon Mark Evans J.M. Fedel Paula Finkel Jack Finley

Amy Kessler Katrina Kill Cheryl Kirby Caron Klement

CHAIRPERSON LEVEL Special Tree Neurorestorative Eisenhower Center Rainbow Rehab president LEVEL Hope Network Neuro Rehabilitation Health Partners Miller & Tischler director LEVEL Lighthouse Dignitas, Inc. Community Connections Advisacare Sinas Dramis Law Firm friends of biami (in alphabetical order) Tina Adoglu Bethany Agauas Bonnie & Glen Anderson Cheryl Angelelli Roderick Arnold Karen & Kevin Arnold Cynthia & Timm Barnbrook Lana Berry Jerryl Birchmeier

A SINCERE THANK YOU TO THE ORGANIZATIONS AND INDIVIDUALS WHO MADE FINANCIAL GIFTS LAST YEAR IN SUPPORT OF THE BRAIN INJURY ASSOCIATION OF MICHIGAN

Margie & John Kline Aleksandr Kokoszka Marta & Raymond Kramer Linda Krumm Fred Lebowitz Lexus Champions for Charity (CMGRP, Inc.) Martin Lipton Maple Hill Auto Group Elaine Margolis Delores McCauley Deborah McCormick Jeannette & Bob McCrickard Phillip McRoberts, DPM Linda Michaels Gruber Wayne J. Miller Keith Moore Teresa Neal Martha Nield Amanda Paganetti Gerda & Michael Paschal Barry Pearlman Sheila & Dr. Owen Perlman Alissa Pianin Tom Pollack Portage Fit Body Boot Camp Don Prior Mark Rosner Lori Rucinski Jacquelyn Sage Randi & Stuart Sakwa Marcia & Dr. Charles Seigerman Henry Shymanski Jack Richert Lori Rintala Leslie Rosenwasser

Karen & Steve Siporin Marilyn Sofa-Adams Aimee Sova Jennifer & Joseph Spaly

Alisha Spencer Holly Stenberg Melissa Stewart Susana Stoica Michael Streicher Sally & Rick Sutherland Lisa, Bethany & Randy Thomas Caryn & Larry Thurston UHY Cares Monica VanAcker Jill Vandercook Philip Weaver Webasto Convertibles USA, Inc. Wellbridge of Novi Patti & Christopher Welborn Patricia Wendel Chris Wilcox Lynn Williams Willowbrook Rehabilitation Dorothea Wilson

Reva Bornstein Susan Bornstein Dr. Randal Bruce Barry J. Bruns Lindsey Burton

Charity Golf International Teresa & Charlie Cannon David E. Christensen

Joyce Wright Marian Zeir Marty Zobrovitz

Marcy Coffman Dr. Evan Cohen

George Sinas Thomas Sinas

7305 GRAND RIVER, SUITE 100 | BRIGHTON, MI 48114-7379 PHONE: 810.229.5880 | TOLL-FREE: 800.444.6443 BIAMI.ORG

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