a newsletter by
Summer I 2011
Heads Up headlines
Statewide Brain Injury Commission to Study Support Services
When Sen. Harriette Chandler (D-Worcester) was contacted by one of her constituents looking for help locating brain injury services, it quickly became apparent to the Senator that there were some significant gaps in services. As a result of that interaction, Sen. Chandler reached out to Representative Thomas P. Conroy (D-Wayland) and together they formed the Acquired Brain Injury and Traumatic Brain Injury Sen. Chandler (center) recently met with BIA-MA Staff and brain injury survivors to discuss brain injury issues and concerns. Commission. The goal of the Commission is for persons with both acquired injury’s moment and we are all to investigate the residential and and traumatic brain injuries in the called together in support of the Commission’s efforts.” community-based support services Commonwealth. The committee includes a wide The Commission will meet once cross-section of professionals in a month through August and then the field of brain injury, including submit a report of their findings to BIA-MA Executive Director Arlene the legislature by September 30, Korab, BIA-MA Western Regional 2011. Pedestrians: Manager Suzanne Doswell, Michael “My hope is that at the Take the steps to Hirsh, MD, Surgeon-In-Chief conclusion of our meetings we stay safe...........3 at UMass Memorial Children’s are able to present a thorough, Medical Center, Francesca focused report to the legislature and LaVecchia, PhD and Debra Kamen, have that report serve as the basis Professional both from the Statewide Head Injury of legislation that will improve Perspectives.........5 Program. the Commonwealth’s ability to “The establishment of a ABI/ adequately serve those with brain TBI Brain Injury Commission injuries and their families,” says BIA-MA Honors brings enormous focus to a major Sen. Chandler. Inta Hall.............10 health issue that has been sorely For more information about the overlooked in our Commonwealth,” Commission, visit www.mass.gov/ says Doswell. “This is brain hhs/braininjurycommission.
inside this issue
For more information about the BIA-MA, call 1-800-242-0030 or visit www.biama.org
any of us have been affected by the recent downturn in our economy, and the question of how to support our chosen organizations has become more difficult. As the government and private industry come under greater and greater pressure to slash budgets, it becomes more incumbent on individuals to fund the charities that are closest to their heart. The Brain Injury Association of Massachusetts is that organization for me. I first became involved with the association when my son sustained a brain injury 19 years ago. When such tragedies occur, it’s almost always sudden and one doesn’t know where to turn for help. BIA-MA was there for me and my family, so I wanted to give back. Getting involved in BIA-MA’s golf tournament seemed to be a great way to support the Association. This annual fundraiser has raised a lot of money over the years. In fact, since 2008 the golf tournament has raised nearly $75,000. That money has helped BIAMA provide outstanding services to brain injury survivors and their families, and offer prevention and education programs to an everwidening audience. When I got involved with the golf tournament, there were only a few members on the committee. I remember a few meetings when it was just Arlene and me. Today, the golf committee has eight energetic, enthusiastic members, and we’re hoping with your support that this will be the best event yet. This year’s golf tournament will once again be held at Juniper Hills Golf Course in Northborough which is ranked among the top ten courses in the state. The great thing about the course is that it’s challenging for more experienced golfers, yet manageable for those who want to participate to support a good cause. Over the years, I’ve gotten my wife, daughter, her husband, and my nephew’s family involved as well. I see it as a family day – a great way to have fun, relax, and help a very worthy cause. At the end of the day, I always feel good that I have participated. So, practice your swing and mark your calendar for Monday, August 8th. A large group adds enthusiasm, so why not ask a friend or colleague to join you. Maybe your company would like to become a sponsor? If you don’t want to play, you can volunteer to help at the event or join us for a wonderful dinner and raffle. There are many ways to participate, and we are always happy to welcome new friends. I believe that giving comes in many forms, and that time, energy, and enthusiasm are all gifts that have value. So, please join us. Mark Goldberg is a BIA-MA Board Member and President of Milton A. Goldberg Co., a promotional marketing company.
BIA-MA Board of Directors Officers Kenneth Kolpan, Esq. President Shahriar Khaksari, Ph.D., CFA Past-President David Dwork, Esq. Treasurer Harold Wilkinson, M.D., Ph.D. Secretary David “Chip” Bradley, Jr. Survivor Council, Co-Chair
Members Ulrike Berzau, MM, MHS, PT, FACHE Vice President, Inpatient Rehabilitation, Spaulding Rehabilitation Network Robert C. Cantu, M.D., M.A., FACM Neurosurgeon & Co-Founder, Sports Legacy Institute Tim Cooney Executive Director, Central Mass Safety Council Ellen Deibert, M.D., CBIST Neurologist & Clinical Consultant, ImPACT Listo Fisher Radio Announcer and Host Mark Goldberg President, Milton A. Goldberg Co. Agnes Moses President/Owner, Standards Care Staffing Stephanie Goldberg Paskievich Social Worker, Department of Children & Families Edna Pruce Family Member of TBI Survivor Marilyn Price Spivack Founder of BIAA and Family Member
Executive Director Arlene Korab
Advertising deadline for the Fall issue is July 8. To advertise, please contact Pam Bush at firstname.lastname@example.org or 508-475-0032, ext. 18.
BIA-MA does not support, endorse or recommend any method, treatment or program for persons with brain injury. We only aim to inform you. No endorsement is intended or implied.
prevention Pedestrians: Take the steps to stay safe Look both ways when you cross the street. It’s advice you heard a thousand times when you were growing up, and have said many times yourself — and for good reason. According to the National Highway Traffic Safety Administration, about 4,100 pedestrians — one every two hours — died in the United States in 2009, and one pedestrian was injured every nine minutes. “We want people to walk and run and be outside more, but we want to make sure that the roads are safe for them,” says Bella Dinh-Zarr, PhD, MPH, North American director of Make Roads Safe. Pedestrians — whether they are walking, running, jogging, sitting in strollers or using wheelchairs —
are everywhere. Most pedestrian deaths occur at night and in urban settings. Interestingly, only about one in four pedestrian deaths occur in intersections. The three groups at greatest risk for pedestrian death and injury are people older than 65, children and alcohol impaired pedestrians. According to Safe Kids USA, about 630 child pedestrians die each year. Alcohol-impairment — either for the driver or for the pedestrian — is reported in about half of the traffic crashes that result in the death of a pedestrian. By heeding a few simple precautions, you can protect yourself and those you care about from becoming statistics. Crossing at intersections — where drivers expect
By Teddi Dineley Johnson pedestrians — is much safer than crossing in the middle, especially on high-speed roads. But don’t proceed until you’ve made eye contact with the driver. And just because the “walk” sign is on, don’t assume you’re safe. Walk on the sidewalk if one is available, and walk facing oncoming traffic if there isn’t a sidewalk. At night, visibility is very important. The number one thing pedestrians can do to stay safe is just pay attention. “Just like a driver, pedestrians need to focus when they are on the roads,” Dinh-Zarr says. “Pedestrians don’t have several thousand pounds of metal protecting them and need to be extra vigilant about protecting themselves.” Reprinted with permission from The Nation’s Health newspaper, APHA.
support network Ambassadors Increase Awareness of Brain Injury The statistics tell a sobering story of the prevalence of traumatic brain injury in our country, but two women from Cape Cod recently spoke of their very personal stories of brain injury to a rapt audience of Rotarians at a weekly meeting of the Rotary Club of Hyannis. Tracy Tarvers and Sharyn Lindsay shared their stories as Ambassadors for BIA-MA. Ambassadors are volunteer speakers who have either sustained a brain injury or have a loved one with a brain injury. They tell their stories to increase awareness and help others avoid this devastating tragedy. Tracy Tarvers wheeled herself in front of the audience and spoke very candidly about her accident thirteen years ago, which left her a quadriplegic. Tarvers always wore a seat belt, except this one time. She was hit from behind on Route 6 and suffered a spinal cord injury and a traumatic brain injury in the accident. Tarvers spent seven months in recovery at a rehabilitation hospital and spoke of how quickly she
New England Rehabilitation Hospital The center for Brain Injury recovery. At New England Rehabilitation Hospital, we specialize in brain injury, but most of all, we specialize in your recovery. With personalized treatment plans, and the most advanced rehab technology, we’re able to give our patients and their families the care and support they need. • Inpatient and Outpatient Programs • Patient and family education • Bioness® H200™ and L300™ • Home assessments for discharge planning • Behavioral management New England Rehabilitation Hospital is proud to support the work of the Brain Injury Association of Massachusetts.
2 Rehabilitation Way • Woburn, MA 01801 • 781-939-1875 www.newenglandrehab.com
By Sandra Madden
was “shut off, closed down, left without the ability to live a normal life.” She needs assistance with all aspects of her daily life. But she remarks that now her life has changed in a positive direction — she has written a book, paints and writes poetry, attends the YMCA, and volunteers at schools. She also volunteers for BIA-MA’s Brains at Risk program and speaks as an Ambassador. She says, “I would give anything to have simply put my seat belt on that day.” Sharyn Lindsay spoke of her son Caleb, who was once a successful young businessman, until a skateboarding accident nearly took his life in 2007, when he was 25 years old. Caleb was holding on the side of a friend’s truck while on his skateboard, and the board caught under the rear tire, lifting Caleb up in the air and then landing him on his head. “He had not a scratch on his entire body, but his head was split open like a ripe cantaloupe. Caleb was not wearing a helmet,” Lindsay says. Caleb was first given a seven percent chance of living and spent six months in the hospital. Once out of the hospital, physical, occupational and speech therapy became the norm of the week’s events. Caleb is blind in one eye, deaf in one ear, has lost his short term memory and lost most of his friends, but the hardest part for Lindsay is “that Caleb remembers who he was before (the accident) and cannot quite figure out how to return to that person. He is lost and burning with questions.” “I am speaking to you today in the hope that I am able to help even one other human being to avoid the pain we have lived each day of our life since Caleb’s accident,” Lindsay told the group. “Then I will feel something good has come out of his tragedy. I have set my intention to no longer let brain injury be the silent epidemic.” The Ambassador Program focuses on injury prevention and education for all ages, and is tailored to individual audiences. Each Ambassador’s story is unique and puts a personal face on the issue of brain injury. If your organization is interested in having an Ambassador from BIA-MA speak, call Kelly Buttiglieri at 508-475-0032 or email email@example.com.
professional perspectives Recognizing and Coping with Empathy Fatigue Rehabilitation professionals are taught that empathy is the foundation for building an alliance with clients. Even the Code of Professional Ethics for Rehabilitation Counselors clearly states that the professional should make every effort to place the client’s interests and needs before their own. And while most individuals who choose helping roles understand that empathy is a necessary part of the job, most do not understand the possibility for empathy fatigue. Empathy fatigue is similar to professional burnout; however, burnout happens gradually where as empathy fatigue can occur suddenly. Often empathy fatigue occurs in new professionals because they are less aware of the realities of working with individuals with chronic illnesses and disabilities. However, the individual with greater self-awareness is more likely to cope with empathy fatigue. So what are some of the risk factors for empathy fatigue? Here are a few to help one recognize the signs in him or herself or a co-worker: • New to the helping professions • Unrealistic expectations of self and the job • Inexperienced working with chronic or severe disabilities • Lowered levels of enthusiasm for the job • Higher levels of cynicism towards the job • Maladaptive coping skills • Increased use of alcohol, tobacco, caffeine, or other drugs • Organizational insensitivity towards employees • Personal values or beliefs that are not consistent with the clients or the company • Inadequate support systems outside of work
By Amanda Sexton
3. Focus of team members’ emotions regarding cases and validate feelings. 4. Balance case loads so that individuals are not overwhelmed with demanding clients. 5. Promote education and wellness of employees. By creating a work environment that allows professionals to express negative feelings and stress, empathy fatigue will become easier to recognize in its early stages as well as easier to deal with. By teaching employees how to care for themselves both inside and outside of work, individuals will learn more selfawareness and be better able to avoid empathy fatigue.
Recognizing empathy fatigue early is essential in dealing with it effectively. So what are some ways an organization or an individual experiencing empathy fatigue can deal with its effects? 1. Participate in peer support groups that meet regularly to vent emotions and stress. 2. Use clinical supervision with new professionals to monitor and teach coping skills.
For more support and resources, contact BIA-MA at 1-800-242-0030
advocacy & collaboration Get Involved with BIA-MA — Become a Legislative Advocate Are you a medical professional, survivor, family member or friend who has navigated the health care system on behalf of a brain injury survivor? Are you frustrated by the lack of services? Have you come up short when looking for resources? Do you want to increase awareness and create policy change? If you answered “yes” to these questions, you might be an ideal candidate to become a BIA-MA Legislative Advocate. Legislative Advocates are representatives of the BIA-MA who will:
• Share the results of your efforts with BIA-MA so we can better support and collaborate with you.
• Meet with their legislative representatives on behalf of individuals with brain injury. • Will put a “face” on brain injury by sharing anecdotes and personal stories. • Educate legislators and state agency administrators through testimony at public hearings, written comments, and phone calls. • Get others involved in becoming an advocate – there is power in numbers.
“It is time for a new generation to build an advocacy team to continue the good work that Inta Hall started,” says Arlene Korab, BIA-MA Executive Director. “With so many newly elected legislators, there’s a lot of opportunity.” For more information on becoming a Legislative Advocate, please email firstname.lastname@example.org and visit www.biama.org to learn more about ongoing legislative activities.
If you decide to get involved, BIA-MA will provide you with: • • • •
Training Talking points on key issues Updates on key issues Information, fact sheets and materials
An Opportunity to Live in the Community
Vinfen provides a comprehensive array of services to children, youth and adults with psychiatric, developmental and behavioral disabilities. Vinfen • 950 Cambridge Street • Cambridge, MA (617) 441-1800 www.vinfen.org
200 Ivy Street Brookline, MA 02446-3907 • (617) 620-7779 • Clinical, educational, vocational, day and residential therapeutic programs for students with acquired brain injuries and other neurological challenges. • Monthly Family Support Groups • Consultation and Inclusion Support Services • Interdisciplinary Team Approach • Year-round programs for adolescents age 13-22 • DOE and OCCS approved
If you or a loved one with a brain injury is living in a nursing home or rehabilitation hospital and would like to move into the community, Medicaid will be accepting applications for residential and non-residential programs from June 13 through July 1, 2011. Applications must be postmarked during the application period. There will be opportunities for applicants to transition to a variety of community living arrangements, including their own apartment, a group home, the home of a friend or family member, or adult foster care. Support services include case management, individual skill trainers, adult companions, homemaker services, respite, transitional supports and home modifications. “Living in the community has a remarkable impact on the quality of a survivor’s life,” says Arlene Korab, BIA-MA Executive Director. “We hear stories of dramatic physical and cognitive improvement, and an ability to live more independently.” Survivors of all types of brain injury, including TBI, can apply. For an application or more information, call 1-866-281-5602 or visit www.biama.org.
survivor tips Tips to Maximize Stroke & Aphasia Recovery
By Paul E. Berger
I had a stroke from a ruptured aneurysm when I was 36. I was severely disabled, paralyzed on my right side (hemiplegia) and unable to talk, read, or write (aphasia). I had inpatient rehabilitation until my insurance ended. Although I made great progress in the hospital, when I came home I could not walk, I could only say a few words, and I was struggling to regain my reading skills. I wanted to continue my recovery, and believed that I could get better. It was hard, but I did it. Here’s how you can do it too. Tip # 1: Take responsibility for your recovery. Consider your doctors, therapists, and other health care professionals as partners or coaches who guide you in making decisions. Tip # 2: Set treatment goals that are important to you. You and your family should work with your health care “coaches” to set goals that will motivate you to work hard on your recovery. Tip # 3: Maximize inpatient therapy. Research in the field supports what I learned from my own experience: you should push for as much intensive rehabilitation and therapy as you can take every day. Tip # 4: The end of insurance coverage does not mean the end of recovery. Physicians often prescribe the amount of therapy that is typically covered by insurance, and some therapists scale their treatment plans the same way. Work with your therapists and physicians to develop and continually revise a treatment plan. Tip # 5: Before insurance ends, try to negotiate more. Since insurance companies, including Medicare, set general rules for coverage, find out exactly how many dollars or sessions your plan covers for each type of therapy. If you have a treatment plan that goes beyond their rules, urge your therapist or physician to call or fax on your behalf to extend coverage. Tip # 6: Consider all forms of therapy and rehabilitative care for stroke recovery. This means speech, occupational, physical, respiratory, recreational, psychological, spiritual, and vocational. Consider alternatives like yoga and massage. Tip # 7: If your insurance doesn’t cover it, look for alternate funding sources. Certain programs have sliding fee scales based on need, including county recreational and educational resources. There are government-funded grants and resources for adaptive equipment. Tip # 8: Do multiple activities every day. Going to therapy sessions is not enough. You need to extend what you learn in therapy and stimulate your brain and your body with a variety of activities every day. Tip # 9: Try new things. Keep an open mind and a positive attitude. Medical device and treatment innovators are focusing more and more on stroke, and any day something new could be just the thing for you. Tip #10: Get Involved. You can find new and different products, services, and approaches to stroke and aphasia recovery by getting involved in local programs. Ask to serve on consumer committees for your hospital or stroke association, or join with other stroke survivors and professionals to start your own group.
This article was reprinted in part with permission from the author. Paul Berger is a speaker and author. To find out more about his programs and services, visit www.StrokeSurvivor.com or call (703) 241-2375
caregiver tips You are the Trustee of a Special Needs Trust – Now What? By Lisa Olinger It is important to understand that your role as trustee can be confusing and you should consult with a qualified attorney, financial advisor, and tax professional. A special needs trust is drafted to ensure that the disabled person’s (beneficiary) funds will be properly managed and to provide for continued access to government assistance. Such assistance provides for essentials, but may not provide for everything a person needs to have a good life. The funds in the Special Needs Trust can provide for these additional things without being counted towards the resource limits for federal or state assistance. For example, trust funds may be used for things such as clothes, vacations, or recreation. Basic Duties as a Trustee • Carefully follow the instructions in the trust document and protect the trust property, make sure it is not lost or misused. • Invest the assets for a reasonable rate of return (check the trust document for any investment restrictions). • Make sure required taxes are paid. • Provide a financial accounting to the beneficiary (the disabled person or their legal representative), normally once a year (unless the trust document specifies more frequently). Initial Steps • Find out which public assistance program the beneficiary receives. • Obtain an Employer Identification Number (EIN) from the IRS and use this number on all trust bank accounts and investment accounts. • Identify the property that is part of the trust (i.e. bank accounts, real estate, life insurance). • If this is a new trust, place the trust property in the name of the trust. • Make sure valuable assets are insured. • Avoid reducing Social Security Income (SSI). • Don’t give the beneficiary cash. • Don’t give the beneficiary any food or shelter items (this is supposed to come from SSI), or “in kind” items such as paying for rent, mortgage, real estate taxes, electricity, water, etc.
• Pay the beneficiary bills directly (other than food or shelter items) - such as a dentist bill. Beneficiary Who Receives Only Social Security Disability Insurance (SSDI)/No SSI It is much easier to manage a trust in this case because there is no resource test, only the previous work earnings. You can give this person cash, or food/ shelter money without reducing the SSDI benefit. Financial Record Keeping • Bank statements, brokerage statements, sale/purchase of stocks, dividends received • Certificate of Deposit • Income tax returns • Receipts/invoices for purchases (helpful to keep notes as to why purchase was made) • Updated trust asset values • Personal records regarding the beneficiary • Personal records such as legal name, SS #, date of birth • Income, medical insurance, public assistance • Contact information of service providers, case managers, residential manager, legal guardian, close family members • Legal documents Summary provided based upon “Managing A Special Needs Trust: A Guide for Trustees” by Barbara D. Jackins, Esq., Richard S. Blank, Esq.,Ken W. Shulman, Esq., and Harriet H. Onello, Esq., (2010).
research Natural History of Recovery from Brain Injury After Prolonged Disorders of Consciousness By Douglas Katz, M.D. The natural history of recovery from brain injury typically consists of a period of impaired consciousness, a subsequent period of confusion and amnesia, followed by a period of post-confusional recovery of function. Patients with more severe injuries may have more prolonged episodes of unconsciousness or minimal consciousness and may not fully evolve through this continuum of recovery. There is limited information on the course of recovery and long-term outcome of patients with prolonged unconsciousness, particularly those with extended periods in the minimally conscious state. Further, patients with impaired consciousness are frequently denied access to hospital-based rehabilitation services because of uncertain prognosis and a perceived lack of benefit from rehabilitative interventions. Consequently, a study was conducted involving a consecutive series of 36 patients with traumatic (TBI) and non-traumatic brain injury (nonTBI) in a vegetative state (VS) or minimally conscious state (MCS) on admission to a specialized, slow-to-recover brain injury program in an acute rehabilitation hospital. The patients were retrospectively reviewed to evaluate course of recovery during rehabilitation hospitalization and in follow-up, 1â€“4 years post-injury. There were a number of independent variables in the study, including time to resolution of VS, MCS and confusional state/posttraumatic amnesia (CS/PTA) based on a variety of industry criteria. In addition, outcome measures (calculated separately for TBI, nonTBI, VS, or MCS on admission subgroups) included proportion of patients who recover and recovery time to MCS, CS/PTA stages, household independence, and return to school or work, as well as Disability Rating Scale (DRS) scores at 1, 2, 3, and 4 years post-injury. The results? The majority of the patients emerged from MCS (72%) and CS/PTA (58%) by latest followup. It took significantly longer for patients admitted in VS (16.43 weeks for MCS , 30.1 weeks for CS/PTA) than MCS (7.36 weeks for MCS, 11.5 weeks for CS/ PTA) to reach both milestones. Whatâ€™s more, almost all who failed to clear CS/PTA by latest follow-up were
patients with nonTBI or TBI, with VS lasting over eight weeks. The duration of MCS was a strong predictor of the duration of CS/PTA after emergence from MCS, accounting for 57% of the variance. Nearly half the patients followed at least one year achieved recovery to, at least, daytime independence at home and 22% returned to work or school, with 17% at or near preinjury levels. The conclusions drawn from this study? Patients in VS whose transition to MCS occurred within eight weeks of onset are likely to continue recovering to higher levels of functioning, a substantial proportion to household independence, and productive pursuits. Patients with TBI are more likely to progress than patients with nonTBI, though significant improvement in the nonTBI group is still possible. As a result, active, higher intensity rehabilitation should be strongly considered for patients with severely impaired consciousness after brain injury, especially for patients with TBI who have signs of progression to MCS. Douglas I. Katz is with the Department of Neurology, Boston University School of Medicine, in Boston. He also heads the Brain Injury Program at Braintree Rehabilitation Hospital in Braintree, MA.
advocacy & collaboration BIA-MA Honors Inta Hall, Legislative Advocate and Champion for Brain Injury
Representative Garrett Bradley and Inta Hall
(L to R) Massachusetts Rehabilitation Commission (MRC) Commissioner Charles Carr, BIA-MA Executive Director Arlene Korab, Inta Hall, and Former MRC Commissioner Elmer Bartels
On February 17th, family, friends, health care professionals, and members of state government gathered together at the Massachusetts State House to honor Inta Hall, BIA-MA’s Public Policy Consultant who retired after nearly 30 years of service to the brain injury community. Hall was one of the founding members of the Brain Injury Association of America (formerly the National Head Injury Foundation) and, over the years, has worked with the administrations of Governors Michael Dukakis, Paul Cellucci, Mitt Romney, and Deval
Planning is Key
(L to R) Statewide Head Injury Program Director Debra Kamen, Inta Hall, and BIA-MA Executive Director Arlene Korab
Patrick. She was instrumental in the formation of the Statewide Head Injury Program (SHIP), the Head Injury Trust Fund, the first seat belt law, and the Hutchinson vs. Patrick class action settlement which has moved individuals with brain injury out of nursing homes and into the community. Additionally, Hall has served as a member of the State Advisory Council of the Statewide Head Injury Program, Massachusetts Rehabilitation Council, Advisory Council of SSA Disability Determination Services and the Developmental Disabilities Council.
Slide ‘n Ride Ski Event Raises $6,000
Individuals with a brain injury, whether acquired or traumatic, and their families, can often feel overwhelmed when thinking about the future. The best way to ease your mind is to have the proper planning in place. We’re here to help.
Special Needs Planning Guardianship and Considering Alternatives Transition Planning & Adult Services Advocacy For information about our legal services, contact Attorney Fred Misilo at email@example.com or (508) 459-8059.
Save the Dates!
Annual Special Needs Trust Training - 10/30/2010 NEW Transition Training (Turning 18) - 11/20/2010
Offices in Framingham, Hyannis & Worcester l www.ftwlaw.com
BIA-MA Executive Director Arlene Korab and Peter Noonan of Supportive Living Inc.
This March, BIA-MA and Supportive Living, Inc. collaborated on Slide ‘n Ride, a fun day of skiing and snowboarding for participants of all ages to help raise awareness of brain injury. Almost 100 people participated in the event, which raised roughly $6,000 for brain injury programs and services.
education & awareness Faces Exhibit Garners Media Attention
BIA-MA Celebrates Volunteers’ Work
In March, visitors to the Massachusetts State House were treated to an exciting exhibit titled Faces of Brain Injury. As part of Brain Injury Awareness month, BIAMA compiled the stories and pictures of 10 brain injury survivors to raise awareness and educate the public. The exhibit received extensive media coverage, with stories appearing in the Boston Sunday Globe, New Bedford Standard Times, Health Care Review, Metro Boston, and many others. If you are interested in borrowing the exhibit, contact Pam Bush at pbush@ biama.org
In recognition of National Volunteer Appreciation Week (April 10-16), BIA-MA hosted an evening of fun and games at the Best Western Royal Plaza Hotel in Marlborough. Invited guests included office volunteers, prevention program speakers and presenters, Ambassadors, board members, support group leaders and various committee members. Approximately 60 people enjoyed the festivities which included a light supper followed by several rounds of trivia. BIAMA thanks all those who dedicate time to helping the organization!
Brain Injury Rehab Brain Injury Programs
We are proud to be the first rehab hospital in Massachusetts to earn The Joint Commission’s Gold Seal of Approval™ for acquired brain injury rehabilitation. We’re even prouder of what that means for our patients. With the latest in technology, and a team specializing in neurological trauma, Braintree Rehabilitation makes a difference in the life of every patient we treat.
DOUG KATZ, MD Acquired Brain Injury Program Medical Director
S U P E R I O R PAT I E N T O U TC O M E S
AT B R A I N T R E E
250 Pond Street Braintree, MA 02184
METROWEST MEDICAL CENTER 67 Union Street Natick, MA 01760
Together, we provide affordable, accessible housing with individualized supports so that survivors of brain injury can achieve their highest level of independence in the community. Each of our residences provides a barrier-free, homelike atmosphere with individualized supports provided in accordance with residents’ needs and preferences. Private-pay units now available For more information, visit: www.SupportiveLivingInc.org www.AdvocatesInc.org/Services-BrainInjury
Strength is physical. Strength is mental. Strength is emotional. We help you find the strength you need. Spaulding is proud to support the Brain Injury Association of Massachusetts.
our sincere thanks
Donations Platinum Corporate Sponsor Spaulding Rehabilitation Network Gold Corporate Sponsor Braintree & New England Rehabilitation Hospitals Bronze Corporate Sponsor Vinfen Donations for Think-A-Head Program Central Middle School Holbrook Jr./Sr. High School Holy Family School Johnson Middle School Marblehead High School Mount Alvernia High School St. James St. John School St. Joan of Arc-St. George School The Islamic Academy Town of Wellesley Westfield High School Ambassador Program Donations Burlington Rotary Club Annual Appeal Save One For Susie Foundation Deborah Ayabe Louise Beaudreau William and Karen Bloom Thomas and Alice Bray Carla-Lisa Caliga Mary Cashman Andrew Castiglioni Frederic Clifford Bernard Colson Jeffrey and Victoria DeCarli Ita Dennehy
James Garabedian John and Barbara Gardner Rita Gardner Scott and Ann Gillespie Mel Glenn Cheryl Hanington Thomas and Patricia Hawes Otto Judicke Thomas and Barbara McGuirk Anne Morley Beverly Mullen Karen & Peter O’Donnell Adelaide Osborne Tina Petricca Linda Z. Podbros Donna Rego D. D. Rossman Mary Rotchford Peter and Kellie Rowell Ralph Sbrogna Daryl and Denise Simoneau Nancy Smith Maxwell Solet Carrol Stephens Jean Tsokanis Paul and Rita Zarella General Donations Elizabeth Adams BABIS Thea Curry Tara Gouin Bruce Martin New Habitat, Inc. Taryn Ouellette Partners Healthcare Systems Martha Schiff Elliot & Marcie Tardiff United Way of Southern PA
Anthony Venuti Edward & Lorraine Webber Westfield State University John Zakian Honorarium for Inta Hall William & Mary Lou Allan Duane & Rosalie Berquist Jean Bush James & Eileen Chernoff Alice M. DeMichelis Ann & Sccott Gillespie John & Clare Keane Staff at SHIP /Mass Rehab Commission James & Anni Zechello Memoriam for Michael Carey Kristina Carey Cherus Lanman Memoriam for Doris Cormier Lawrence Litwak Memoriam for Irene Furness Robert & Joyce Brown Edward & Therese Forget Judith Levardi Helen Maislen Robert & Barbara Robinson Memoriam for Doris LeBlanc Patrick & Ann Toomey Memoriam for David Malloy Lucille DiGravio Memoriam for Robert O’Donnell Andrea O’Donnell
Memoriam for Alex Paganelli Thomas & Lori Alighieri Joseph & Barbara Beausang Thomas Bourque Ann Bowles Richard & Kerry Carrara Marissa Cotsonas-Bachand Gretchen Coyle-Donohue John & Nancy Fahey Susan Grant Lynne Greeley Nick Grout Joe Gruseck Kettel & Chantal Jean-Pierre Neil & Ann-Maria Johnson Ann Marie Johnson Cynthia Joseph Kent & Jean LaMere Melinda Lee Arlen & Lindsay Li Phillip & Julie Martinos Owen & Jane McElhinney Laura McGovern Milton Primary Care, LLC Colleen Nixon David & Lisa Sanderson Richard & Janice Savery David & Robert Singer Roberta Singer Mike Sweeney George & Carol Tucker Andris & Rebecca Vizulis James & Pamela Watts Jillian Zack Memoriam for Richard Souza Sandy Forrest
Congratulations to the Brain Injury Association of Massachusetts! “Making lives better for those with brain injuries.” Attorney Kenneth Kolpan www.kolpan.com firstname.lastname@example.org
regional updates Southeast Office Hosts Emergency Preparedness Workshop Hurricane Katrina and the earthquake that recently struck Japan are just two examples of the kinds of emergencies that could strike our families. Such disasters have a disproportionate impact on people with disabilities. How should we prepare? Nathaniel Trull answered that question for members of the Southeastern Region’s support groups during a presentation of Emergency Preparedness for People with Disabilities, Getting Ready for an Emergency. Trull and his mother, Elizabeth, a charter member of the Brilliant Buzzards Support Group, are survivors of brain injuries, sustained in a car crash. Trull, chairperson of the Powerhouse SelfAdvocacy Group and a workgroup member of the Massachusetts Task Force on Emergency Preparedness and People Requiring Additional Assistance, presented the group with instructions such as what to have on hand in an emergency, items to include in a “Go Bag” (a bag packed and ready to grab on the way out the door) and making plans with friends and family. One of
the attendees, Matt, said after the presentation, “I feel so much better after hearing Nate’s presentation. I am going to go right home and do all of the things that he recommended.” Trull can be reached at email@example.com
Western Office Continues Efforts to Raise Awareness of “Natalie’s Bill” Collaborating with BEST (Belts Ensure a Safer Tomorrow) and over 35 other supporting organizations, BIA-MA is at the forefront of legislative advocacy for the passage of Massachusetts’ primary enforcement seat belt bill. Beatriz Fuentes, BIA-MA staff member and mother of Natalie De Leon for whom the bill has been named, continues to work tirelessly toward its enactment. Fuentes, who lives in Springfield, has been traveling across the Commonwealth to share her story and gain support from legislators, minority groups, civic organizations, and the general public. She has recorded public service announcements at Children’s Hospital in Boston, was a cover story in AAA’s Horizons magazine, was the subject of an editorial in the Springfield Republican, and has been interviewed by numerous newspapers, radio and television stations. Most recently, she attended the BEST Coalition’s legislative breakfast at the Massachusetts State House. The momentum for a primary seat belt law is building. Passage would increase compliance use by
at least 10 percent, save lives and prevent debilitating brain injuries. “It’s shocking that Massachusetts ranks 48th among states in seat belt compliance. Now is the time for change,” says Fuentes. BIA-MA’s Western MA Office has amassed volunteers to canvas communities, visit businesses and religious organizations, call legislators and reach out to friends and colleagues. From the Cape to the Berkshires, the effort is growing daily with hundreds of letters and cards of support flowing to legislative offices. BIA-MA Board Member Edna Pruce has also gotten involved. As Chairwoman of the Massachusetts Brain Injury Advisory Board, she has contacted her legislators and reached out to members of the Black and Latino Legislative Caucuses. Sen. Harriette Chandler and other legislators have expressed their support at public meetings, while Sen. Pat Jehlen has helped to separate the question of racial profiling from the issue of seat belt safety and saving lives. As more legislators join the effort, prospects for passage of the bill are looking good. Go to www.biama.org and get involved.
news & events Mark Your Calendars for These Upcoming BIA-MA Events BIA-MA Annual Golf Tournament Monday, August 8, 2011 Juniper Hills, Northborough, MA Boston University Sports Concussion Conference Friday, October 28, 2011 Sponsored in part by BIA-MA BIA-MA Pediatrics Conference Thursday, November 3, 2011 Best Western Royal Plaza Hotel, Marlborough, MA BIA-MA Workshops and Trainings Fall 2011 Dates and Locations TBD For more information about these and other BIA-MA events, visit www.biama.org or call 1-800-242-0030.
Clinical Programs & Services • Post-Acute Skilled Nursing Facility
• Wound management
• Certified Brain Injury Specialists
• 24-hour Skilled Nursing
• Staff trained in Crisis Intervention
• On-staff Physician and Nurse Practitioners
• Behavior Specialists 7 days a week
• Tracheostomy and oxygen management
• Neuropsychiatry and Psychiatric services • Neuropsychological testing
• Physical, Occupational and Speech Therapy services
• Multitrauma rehab
• Dysphagia treatment
• Support and supervision from intensive supervision to community re-entry
• Physiatrist consults
• Life Skills Trainers work with rehab to retrain critical skills
• Family support
All insurances accepted.
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