Vol. 5, No. 6
Leading the way in maximizing quality of life for people with spinal cord injuries and diseases since 1948.
Lt. Gen. Russel Honoré Calls for Americans to Make a Change in Culture By Santina Muha, Staff Writer
ou shouldn’t be able to turn on a T.V.… and not hear about (emergency) preparation,” said Lt. General Russel Honoré (U.S. Army – Retired). “We need to make preparedness as important as football. Football won’t save your life, preparedness will.” Honoré reflected often on his experiences as Commander of Joint Task Force Katrina in the days and weeks following that killer storm, as he delivered the keynote address at a first-of-its-kind public policy event, “Building a Culture of Preparedness … Including Everyone” hosted by National Spinal Cord Injury Association (NSCIA) in New Orleans on November 18. This gathering of disaster preparedness
SCI Hall of Fame Welcomes Newest Members in New Orleans By Santina Muha, Staff Writer
he evening began in true New Orleans style with cocktail hour and the Salty Dogs brass ensemble making sure everyone was in the proper mood for celebration as NSCIA and guests prepared to officially induct 18 new members into the Spinal Cord Injury (SCI) Hall of Fame on Monday, Nov. 17 at the 4th annual SCI Hall of Fame induction ceremony and gala at the Contemporary Arts Center in New Orleans, LA. After being greeted by NSCIA’s CEO
experts leaned on their experiences in preparedness and recovery during hurricanes Katrina and Gustav to illuminate steps necessary to better prepare all Americans to take personal responsibility for their own welfare in any emergency. Leading experts from the public, private and civil sectors discussed disaster preparedness through the lens of people living with disabilities that impact their mobility. Honoré observed that Americans now live in “a new normal” where a reliance on electricity and the fact that as many as 42 percent of all Americans live in dense coastal population centers leaves us all vulnerable in an emergency. “When we have a disaster in this ‘new normal’ we live in, the impact of the absence of power is astronomical,” said Honoré. “When we lose power we’ll be set back to the way we lived 60 years ago.” and executive director Eric Larson and presenting sponsor AT&T’s Keith Hitchens, guests followed the brass band down a spiral ramp and into the artsy warehouse space where the ceremony and jazz concert would take place. With the sights and sounds and smells of the crescent city now well ingrained NSCIA President Pat Maher welcomed the incoming inductees and all the guests, kicking off the formal program. New Orleans was a particularly poignant choice for the host city of this year’s SCI Hall of Fame as NSCIA celebrated its 60th year of working on behalf of the hundreds of thousands of Americans living with spinal cord injury or disease. “Hurricane Katrina struck as we were pulling together our inaugural SCI Hall of Fame gala back in 2005 and changed the playing field almost overnight for those of us working in the disability field,” recalls NSCIA CEO K. Eric Larson. “To be in this great city and celebrating these amazing individuals while we host a discussion on ways in which emergency preparedness can be more inclusive of everyone just feels right.” NSCIA has played a significant role
General Russel Honore opens NSCIA’s town hall meeting.
Honoré focused his remarks on the need for at-risk communities to be prepared to weather the disasters of the future. Specifically, he called upon local and state governments to mandate that preparedness be taught in public schools and that businesses distribute affordable and comprehensive disaster preparedness kits.
Honoré’s remarks were followed by a panel discussion moderated by Marcie Roth, executive director of the National Coalition for Disability Rights and past executive director of NSCIA. Roth made a case for not treating Americans with disabilities Continued on page 8
Attendees at the 2008 SCI Hall of Fame gala enjoyed the music of the Ellis Marsalis quartet in a jazz club setting.
post-Katrina in working with both government and business to better prepare the disability community for future emergencies. During recent hurricanes Gustav and Ike, NSCIA served hundreds of people with mobility disabilities as they evacuated or recovered from the storms, and has continued a leadership role in working to make emer-
gency preparedness more inclusive. This year’s emcee, author/television writer/public speaker Allen Rucker shared a series of somewhat tongue-in-cheek stories of heroism – the kind of stories that make some laugh, others cringe – and then proceeded to present the first award of many Continued on page 13
If you use an
intermittent catheter, youâ€™ll take to LoFric like...
Take comfort in LoFric. It uses advanced technology that literally binds a slippery layer of water to its surface, making it 1,2 easier to insert and, just as importantly, remove. No wonder itâ€™s the intermittent catheter of choice for comfort.
'PSNPSFJOGPSNBUJPO DBMM-0'3*$ PSWJTJUXXXMPGSJDVT 1. Diokno AC, Mitchell BA, Nash AJ, Kimbrough JA. Patient satisfaction and the LoFric catheter for clean intermittent catheterization. J Urol. 1995;153(2):349-351. 2. Sutherland RS, Kogan BA, Baskin LS, Mevorach RA. Clean intermittent catheterization in boys using the LoFric catheter. J Urol. 1996;156:2041-2043. ÂŠ 2008. 21535 Hawthorne Blvd., Ste. 525, Torrance, CA 90503. LoFric is a registered trademark of Astra Tech, a company in the AstraZeneca Group. US-0408
guest editorial SCILife STAFF MANAGING EDITOR: K. Eric Larson STAFF WRITER: Santina Muha Design and Layout: Nikolai Alexeev Advertising Sales: Joyce Parker Data Input: Bonnie J. Haynes
NSCIA NATIONAL OFFICE STAFF Chief Executive Officer: K. Eric Larson Resource Center Manager: Bill Fertig Information Specialist: Daniela Castagnino Information Specialist: Charleene Frazier Information Specialist: Jason Hurst COMMUNICATIONS ASSOCIATE: Santina Muha Development Director: Russell Mark Web Services/Publishing: J. Charles Haynes, JD Webmaster: Nikolai Alexeev
Board Of Directors Executive Committee
PRESIDENT: Patrick Maher Immediate Past President: Harley Thomas (1939 – 2007) CHAIR, EXECUTIVE COMMITTEE: David Boninger, PhD Vice-President for Chapters: Deb Myers Secretary/Treasurer: Janeen Earwood CEO/EXECUTIVE DIRECTOR: K. Eric Larson
Directors Paul Aronsohn Pamela Ballard, MD Don Dawkins Carmen DiGiovine, PhD John Fioriti Gretchen Fox Veronica Gonnello Andy Hicks Christine N. Sang, M.D., M.P.H
General Counsel Leonard Zandrow, Esquire
SCILife PUBLISHER Publisher: J. Charles Haynes, JD SCILife is a publication of the National Spinal Cord Injury Association One Church Street, Ste. 600 Rockville, MD 20850
SCILife is dedicated to the presentation of news concerning people with spinal cord injuries caused by trauma or disease. We welcome manuscripts and articles on subjects related to spinal cord injuries or the concerns of persons with disabilities for publication, and reserve the rights to accept, reject, or alter all editorial and advertising materials submitted. Manuscripts and articles must be accompanied by a self addressed stamped envelope if return is requested.
Why Should Each of Us Donate to NSCIA? By Russell Mark
eople affiliate with a charitable organization for one simple reason – to bring meaning to their life. From civic groups to religious organizations, from political parties to homeless shelters or art centers, we are all drawn to be involved in efforts that bring meaning to our lives. People want to make a positive difference, so they “commit to a cause.” Yet, for as vast and varied the causes in this country, all of them have one thing in common: they need resources to fulfill their mission. From stamps on envelopes to the light bill to outreach of every kind (including this newspaper), it takes money to make it happen…and for people’s lives to be made better for having done it. NSCIA needs you and we need your financial support. It’s that simple. For 60 years NSCIA has been fighting
Missing Copies of SCILife?
Items reviewed in New Products Announcements and advertising published in SCILife do not imply endorsement of organizations, products or services. If you have any questions related to your membership with NSCIA, or would like to join, contact us at HDI Publishers, PO Box 131401, Houston, TX 77219-1401, e-mail: email@example.com, fax: 713.526.7787, or phone us toll free at 800-962-9629. For questions not related to membership, write to: SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401 voice: 713.526.6900 fax: 713.526.7787 email: firstname.lastname@example.org or website: www.spinalcord.org.
For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston TX 77219-1401 tel: 713.526.6900 fax: 713.526.7787 email: email@example.com www.hdipub.com
Become a member of our on-line community and get instant access to all previous SCILife issues.
successfully to improve the quality of life for people with spinal cord injury or spinal disease and their families, whether through advocacy on Capitol Hill, research, or improving access to healthcare, assistive technology, education and employment. We have been able to do this because foundations, corporations, government agencies and, most importantly, people like you and me have supported this incredible organization financially. But as you well know, there remains much work to be done. People still get injured or diagnosed each day and need reliable information to make informed life decisions. Too many in our community are still being “warehoused” in nursing homes when they could be living in their own homes. Basic needs are routinely denied by private health insurance or Medicare. Our teenagers and young adults are more mobile and better educated than ever, but careerfocused work is still so hard to find. Seniors with paralysis are living much longer than ever before and need support for successful aging. The list is truly endless. But stop and think what would happen if NSCIA went away tomorrow? Imagine what that impact would mean to you personally and to the people you care about. I’ve got too much “skin in this game” to let that happen and I bet you do too. If NSCIA did not make a real and lasting difference in people’s lives it would have ended a long time ago. But it does make a difference every day and so we’re still here, for you and your loved ones and for all those that will come after us. Nearly 80% of every dollar given to NSCIA goes directly to programs. So, NSCIA is a good steward of your hard earned
money. We don’t take your gift lightly. We know it means a lot to you to give and we are grateful. You may be thinking “Well, I don’t have much to give,” but I can tell you that truly every dollar makes a big difference, especially when it’s combined with everyone else’s gift. Plus, there are many ways to give to NSCIA beyond a simple check and over the next several issues of SCI Life we will explore those opportunities, such as planned giving. The first step, however, is realizing the need to give and how important your gift really is to NSCIA. We simply cannot do our work without you. This year NSCIA celebrates its diamond anniversary; turning 60 years young! If you’ve never given a financial gift before, what a great way it would be for you to say, “Happy Birthday!” You may have even seen our “Give 60” campaign. We are encouraging all of our members and friends this year to donate at least $60 or to get six friends to each donate at least $10 and join NSCIA for free. We’re also asking people to send us a note, along with your gift, telling us why NSCIA is important to you. We will collect and post these stories and statements on our website (with your permission, of course). You can donate to “Give 60” at www.spinalcord.org/give60. If you already support NSCIA, I’m asking that you consider making a special anniversary year-end gift and make NSCIA a regular part of your annual giving. For each of us, giving as much as we can makes a world of difference for those that need the help that NSCIA offers every single day. Together, we really can change the world…so please give generously.
A quarterly magazine for mobility challenged people who want to live easier and better SCI Life Special Get $2 off a year’s subscription $10 for one year - $15 for 2 years if you use coupon or mention this special when you call 888-372-3737, e-mail: firstname.lastname@example.org P.O. Box 1000, Bloomington, IL 61702 www.Specialiving.com
Focuses on • Travel • Products • Accessibility • Health • Inspiration • People • Relationships “I enjoy SpeciaLiving Magazine big time. I’m always anxious to get the next issue.” Steve Norbert, North Dakota “ I love SpeciaLiving — absolutely love it.” Marilyn Berg, Beverly Hills, Florida NAME_________________________________________________________ Street ________________________________________________________ City__________________________________________________________ State________________________
SCILife © 2009
_______Check enclosed _______ Credit card #_____________________________exp. date______
from the executive director
Making Change Real By K. Eric Larson, Executive Director and CEO, NSCIA
n November 17, we held our annual SCI Hall of Fame™ gala in the heart of the French Quarter, enveloped in the rich flavors of New Orleans and surrounded by the jazz of music-great Ellis Marsalis and rising star Jonathan Batiste. But the real stars of the evening were our 18 new SCI Hall of Fame inductees and a new Emerging Leader, whose stories of courage, creativity and incredible dedication to improve the lives of people with spinal cord injury or disease are both moving and energizing. I encourage you to read their profiles on our website,
Paul Aronsohn By Santina Muha, Staff Writer
n addition to personal family experience with disability, NSCIA board member Paul Aronsohn has proved to be a wonderful asset for the disability community and for NSCIA – and he brings some interesting credentials to this role. The only NSCIA board member who has appeared on Comedy Central’s The Colbert Report, Aronsohn has established quite a life path for himself. While running for Congress, Aronsohn’s campaign interns loved the show, and he finally agreed to allow one of them to submit him for a segment that featured incumbent Congress members. Aronsohn says, “I only agreed thinking it was the longest of long shots.” Still, Aronsohn made it onto the program, which is widely known for poking fun at politics and show guests. “Despite advice from advisors that going on the show was too risky,” Aronsohn says, “I agreed to do it.” He notes the experience as one of the most “exciting, yet stressful moments of my campaign.” Aronsohn, who joined the board this past spring, was first introduced to NSCIA by past CEO and executive director Marcie Roth. Aronsohn, who calls Roth his good friend and mentor, says, “Through her, I came to know, appreciate and support the organization.” His interest in disability rights stems from growing up with a sister living with a neurological disorder.
www.spinalcord.org and to join me again in thanking our sponsors, whose generous donations make programs like this possible. At our first ever town hall meeting on November 18, Lt. General Russel Honoré (US Army Ret.) gave an eye-opening keynote address on how far this country has to go to be truly prepared for catastrophic events like Hurricane Katrina. “Building a Culture of Preparedness…Including Everyone” focused on the lessons learned from storms along the Gulf Coast to recent fires in California. People with disabilities are without a doubt the most vulnerable in these situations, yet there is much we can do by taking responsibility for our own safety and pro-actively engaging with federal and local authorities, businesses and consumer groups to truly be prepared. The panel discussion that followed with representatives from the Department of Homeland Security, industry partners and disability consumer groups reinforced that there is so much work left to be done, but preparation can and must happen for lives to be saved. In the coming months you will hear more about what NSCIA will be doing to help build this culture of preparedness in our community. We left New Orleans energized and renewed, and even more dedicated to the mission of National Spinal Cord Injury As-
sociation and truly grateful to those who have supported us through the years. For 60 years, NSCIA has fought for access to better healthcare and scientific research that improves quality of life; we’ve worked to empower individuals and families through peer-support, education, access to jobs and transportation, adaptable housing and assistive technologies that open up the world to our community, and ultimately for everyone. Knowing that in America today, more than a million people and their families live with paralysis due to spinal cord injury and disease (SCI/D), NSCIA is still there providing education, advocacy, research and resources to this vibrant community; empowering survivors of catastrophic spinal disorders to achieve their highest level of independence, health, and quality of life. In my last message, I talked about change being “what we make of it” and shared some thoughts on common themes to effective change – purpose, direction and support. Now, just as president elect Obama and his transition team are doing, we need to begin to make this promise of change real and we have taken some very real steps in recent weeks. At our recent board meeting in New Orleans, the NSCIA board of directors clarified our purpose by renewing its commitment to our mission of enabling people
In 1989, Aronsohn’s family learned that his sister, Patti, had a devastating medical condition. The condition has yet to be effectively diagnosed. In an article published in the May 8, 2008 issue of USA Today, Aronsohn writes, “Watching the progression of Patti’s terrible disease has been heartbreaking. First, there was her need for a walking cane. Then the need for crutches. Then the need to leave her job… the need for a wheelchair… the need for anti-psychotic medications… the need for a part-time nurse… and the need for a feeding tube. And throughout this slow, steady, painful process, we have watched as Patti lost her ability to lead any semblance of a ‘normal’ life.” “My passion for SCI/D is rooted in my more general passion for disability issues,” says Aronsohn. “I firmly believe that there is much that can be done and should be done to enhance the quality of life for people with disabilities. In fact, I believe there is both a moral imperative and an economic imperative to providing greater opportunities to people with disabilities and their families – opportunities to live more comfortably, to live more productively, and to live more fully. This, in my mind, is the great civil rights challenge of our time.” Although most of Aronsohn’s work these days involves healthcare, his early professional career was heavily steeped in national security issues. “Following graduate school and my work on the 1992 Clinton Presidential Campaign, I spent the next eight years working on foreign policy/national security issues at the U.S. Department of State and the U.S. Mission to the United Nations. The focus of much of my work was arms control and nonproliferation.” Aronsohn graduated from The George Washington University with a Bachelor of Arts degree in political communication and a Master of Arts degree in political science. While in school, he held congressional in-
ternships with former senators Bill Bradley and Charles Robb. He then spent several years working on foreign policy and national security issues as a member of the Clinton administration. His experience in government did not end there, and this led to his contributions to the disability community. Aronsohn was the Democratic nominee for New Jersey’s 5th Congressional District seat in 2006. “As a congressional candidate, NSCIA board member Paul Aronsohn (far right) with forI would speak forcefully and mer President Bill Clinton, sister Patti and mother Margot. frequently about healthcare issues, including the importance of stem It was Aronsohn who introduced NSCIA to cell research. But I would consciously avoid Pfizer, and in turn, he says Pfizer has since discussion of my sister’s struggle against a “realized the importance of supporting this terrible neurological disorder. Simply stat- tremendous organization.” ed, my sister’s situation was too personal Recently wed, Aronsohn states, “I am and too painful for me to discuss.” married to the love of my life, Marie, who “But Marcie helped me to understand the is an Emmy-award winning television reimportance of sharing Patti’s story…the im- porter and the mother of my two wonderful portance of sharing my personal feelings… stepchildren – Anna, 15, and Luke, 11.” He and the importance of becoming an advocate says, “A ‘perfect day’ is difficult to describe, for those with disabilities,” says Aronsohn. but I know that it would include the four of “And I haven’t shut my mouth since!” us just hanging out together – something we Aronsohn was elected to a four year love to do.” term on the village Council in Ridgewood, In his free time, Aronsohn loves to read NJ in May 2008, and says, “One of my first non-fiction, watch movies, and spend time acts after being elected to my town council this past spring was to create a community- with his family. He also enjoys playing tenwide disability advisory committee.” Aron- nis, playing softball and taking long walks sohn serves on various committees includ- when time permits. Aronsohn seems content to have found ing: Chairman, Citizens Safety Committee; balance between success in politics, business Council Liaison to the Library Board of and personal life. “Generally speaking, my Trustees; and Member, Parks and Recreation greatest accomplishment has been my ability Committee. He has also established a committee to focus on issues affecting Ridge- to balance my love of family with my love of wood’s disability community – the “Access public service. Both can be all-consuming. Both can be very demanding with respect for All” Committee. Aronsohn currently works for Pfizer to time and energy. But both have allowed Inc., where he is a public affairs executive. me to live a complete life.”
with SCI/D to achieve their highest level of independence, health, and personal fulfillment by providing resources, services, and peer support. The board also confirmed clear direction for the next 12 months with a focus on our core services of our Resource Center, member communications and public policy advocacy, along with active engagement of our national Chapter network. The remaining element we need to make change real is sufficient and consistent financial support. In December, we shared real, human stories as part of a year-end e-mail campaign designed to highlight the impact that NSCIA has on the lives of people with SCI/D and their families. We did this to make sure our members not only understand our mission, but also have the chance to support it financially. We plan to continue to highlight stories like these throughout 2009 as part of our “Give 60” campaign celebrating our 60th year of service. In the coming weeks, I will be reaching out to all our donors and corporate partners, and introducing NSCIA to others, as we make the case for supporting the core services that NSCIA provides. Thank you for being a member of NSCIA, and thank you for your support.
from the president
A Time of Great Change By Patrick Maher, President, NSCIA Board of Directors
ear Members and Friends. I’d like to heartily congratulate President-elect Obama and note that, while I’d have personally preferred more “people-first terminology” in his reference to the disabled and non-disabled in his acceptance speech from Grant Park on Chicago’s beautiful lakefront – I’m a bit prejudiced both in my focus on the impact of language and on the beauty of my hometown’s lakefront – I was equally impressed that our new President has at least recognized that persons with disabilities are a vital constituency in our nation and will be, we hope, considered and respected during his administration. It is crystal clear in my mind that Presidentelect Obama’s stature as a person, and now President, of color can only strengthen his support and empathy for the challenges of
the largest minority in our nation – those of us living with a disability. This year has, by any measure, proven one of the most disruptive and challenging in decades if not longer. We have a new administration, new and daunting challenges as a nation, a new financial market for all intents and purposes – with new debts that will be borne by all of us. Retirements have been shaken, investments lost, homes foreclosed, past alliances further challenged around the world, and all of our futures impacted. If there’s a constant in this new landscape, it’s that anyone living with SCI/D or other disability continues to face the same challenges to maintain, or forge, a quality of life that we did before all of these extraordinary new influences on our world. NSCIA itself is in a new era, with the transition of Eric Larson, former COO and Director of Operations, to our CEO and Executive Director. Our immediate past CEO Marcie Roth has now taken the reins at the National Coalition for Disability Rights and ADA Watch. Marcie has been instrumental in strengthening NSCIA in several strategic areas since 2002, and we
are deeply indebted to her for her passion, abilities and leadership. That noted, NSCIA is in the unique position of having a clear and highly-qualified successor in Eric Larson to reset the compass, add his own unique imprint to the mission, and move us forward with the enthusiastic support of our board, staff and affiliate chapters and support groups around the nation. Look for some exciting transitions as we move into the New Year! On the national scene, in light of the many constraints that we are now facing, it might be accepted as understandable, even logical, that our critical needs to move forward and be fairly supported might be dismissed as secondary to the “greater good”. We cannot allow that to happen. All of us should take this opportunity in our nation’s evolution to engage with others more actively, to take on or campaign for service positions on both disability specific and non-disability boards, committees, faith groups, local or municipal roles and associations – in short, to establish and raise our profile in each of our communities so that we may be recognized as part of the larger solution versus part of the problem. Become influencers, be recognized for your unique strengths, be an agent for and of positive change. For those of you who have already been doing so, I thank and applaud you. You are forward-thinking and emissaries for everyone living with the challenges
of disability. If there’s a clear silver lining in the current national and global environment, I believe it resides not only in the obvious opportunity for President Obama and his administration to take our nation in a new direction, but more uniquely to us in the force of the recently enacted ADA Amendments Act and its weight in supporting our civil rights around opportunities in the workforce, reasonable accommodations, and the validation of the impact of disability on major life activities. I am hopeful that its passage will encourage more of our citizens with SCI or other disabilities to be of service to others, take some risks, press for opportunities, and believe in our ability to succeed. Now is not the time to accept the chronic disparity between working age persons with disabilities and the broader labor pool, or assume that President Obama and his staff will be our agents for change. In fact, it’s the optimal time to sharpen our skills, get back to class, impress a prospective employer, network as widely as possible, and ultimately contribute to strengthening our nation’s future, and by so doing, our own opportunities. Let’s honor the hard work and dedication of everyone responsible for the passage of both the ADA and ADA Amendments Act by shining in this time of pervasive challenge and profound opportunity in our nation. Seize the day! • Created strong relationships with potential team sponsors • Planned a fundraiser in March at the Nautica Charity Poker Festival We have achieved a lot, we have a lot of work ahead of us… it is an amazing adventure for all of us and we will hit the road running! The excitement is undeniable… quad rugby is coming to Cleveland!
Quad Rugby Comes to Cleveland
If you have any questions, comments, or are interested in being a part of our team, please contact Amy Winslow at email@example.com
By Amy Winslow
uad rugby is the fastest growing wheelchair sport in the world and it is not hard to understand why if you have ever watched even a few moments of a game. Fast-paced, intense, physical, demanding; it has all the ingredients necessary for an exciting, crowd-pleasing sport. This is the reason why the sport has quickly reached over 20 countries throughout the world and has 40 teams in the U.S. alone! Already a Paralympics sport, quad rugby is growing fast and furious, just the way the sport is played. Cleveland, Ohio feels no different than the rest of the world and we are on our way to being a part of this exciting phenomenon. Toward the end of 2007, a few individuals in the Cleveland area began feeling like they would want and deserve a team of their own. With the support of the Northeast Ohio Chapter of the National Spinal Cord Injury Association (NSCIA), this interest has evolved into the newest quad rugby team in the nation. These dedicated individuals have been working for the past year on gathering information regarding the sport, gaining support from the community, fundraising, and reaching out to the
rugby community to build on their dream of creating their own team. It has involved a great deal of work, as the sport requires players, coaches, gym space, equipment, and expense (one new chair can cost up to $4,500). However, this hard work has paid off and it is the goal of the Cleveland quad rugby team to compete in tournaments at the start of the 2009 season. I write this article for two reasons. First, I aim to get the word out to the SCI community about our new team. We have come far; however, we have a long road ahead of us. We are still looking for community support, players, coaches, volunteers, and resources. The budget for a single season is high and we have extremely limited resources, therefore it is our community that we must rely on to obtain success. Assistance ranging from monetary donations, time, marketing, and support is always needed and appreciated. The second aim of this article is to reach out to other organiza-
tions, to provide advice and help, to seek advice and help. It is an enormous venture to create a new organization such as ours and it cannot be done without the support of others. With that in mind, we would like to offer our support, knowledge, and experience with any other group that would benefit from it. In this past year, the Cleveland quad rugby team has achieved many objectives and has involved itself in many activities: • We have eight players and two coaches • Received generous offers from 12 volunteers • Purchased two used quad rugby chairs • Located and secured a practice facility • Hosted four fundraisers to assist with our budget demands and purchase new chairs • Increased our marketing throughout greater Cleveland, OH • Written several grant proposals
For 60 years NSCIA has led the way to a better life for people with spinal cord injury and disease.
Help us help others, like we’ve helped you.
Please support “Give 60” at spinalcord.org/give60. Make a secure donation at
profile Darrell Gwynn Foundation Gives Wheelchairs and Hope to Those in Need By Santina Muha, Staff Writer
arrell Gwynn has been living life in a wheelchair since 1990. He has been helping others living in wheelchairs since 2002. The former National Hot Rod Association star, injured in a racing accident, decided to dedicate his life to helping others in situations similar to his to improve their quality of life. He formed the Darrell Gwynn Foundation (DGF) in 2002, later adding the Wheelchair Donation Program. Recent examples of the program’s work include donations of a top of the line wheelchair to a seven year old boy with cerebral palsy in front of tens of thousands of NASCAR fans in Bristol, Tenn. and the donation of a wheelchair worth more than $26,000 to a 23-month old girl with a muscular disorder in Pembroke Pines, Ga. “We’ve made great strides and we never thought it’d be this big,” Gwynn says. “We’re going to give 37 power wheelchairs away this year, and those are $10-15,000 wheelchairs. When we first started out we gave four away, and now we’re able to raise a lot of money
Darrell Gwynn speaking at a news conference in October at Atlanta Motor Speedway. and do a lot of great things.” After his injury, Gwynn still attended races, and he began to notice that many of his fans who used wheelchairs were stuck in what he calls “shoddy equipment”. “So many people were visiting me at races with some of the worst equipment I’d ever seen and I was hearing these horror stories about people getting denied by their insurance companies and insurance wasn’t paying for the proper wheelchairs,” said Gwynn. “So we thought that this would be a great thing to do.” Arranging for special presentations, many of the children and young adults receive these custom-built power wheelchairs under extraordinary circumstances. From Daytona to the Homestead Miami Speedway to Gainesville, Fla. and beyond,
a wheelchair gift from Gwynn often proves to be an exciting event for the recipient. In addition, Gwynn personally visits almost every recipient, providing words of hope and encouragement. To add to the excitement and uniqueness of these presentations, Gwynn says, that about 80 percent of the donated chairs have been themed – everything from Barney the Dinosaur to Miami Heat to Winnie the Pooh. In addition to their Wheelchair Donation Program, DGF has started a Spinal Cord Injury Awareness Week in Florida during which quadriplegics, media celebrities and others speak to high school students and the general public, focusing on SCI prevention and education. Explains Gwynn of the this year’s third annual event, “We speak to the schools, have an education program, have posters in rehabilitation centers, run a thousand public service announcements with myself and Tony Stewart on how to prevent SCI and more. All of the NASCARs that are racing in the Homestead Miami Speedway Ford 400 will have our decals on them.” “Our foundation is doing things that others aren’t,” says Gwynn. “There was never an SCI awareness week until three years ago. This is something we’re looking to take national.” The mission of his foundation, Gwynn tells is, “Prevention, education, awareness and quality of life. And research is a portion of it, where we have partnered with the Miami Project to Cure Paralysis. We’re not the experts on the research. – That’s why we’ve aligned ourselves with whom we feel are the experts.” Gwynn says, “My philosophy is…. until
there’s a cure, we’ve got to help the people that are out there. Hopefully one day we can put the wheelchair companies out of business, but right now we need them. Because do I think that the Miami Project will find a cure in our lifetime? Absolutely. But guess what? There are a lot of people (living with SCI/D) in the meantime.” And the DGF plans to keep up the good work and stay on mission. “We’ve got our work cut out for us right where we’re at. We’ve got our niche carved out and we’ve got to stick to our mission. We’ve got a lot more to go and there are more things to do within our mission.” Gwynn’s favorite part of this journey is giving away wheelchairs. “When you see the smile on that person’s face, you know you’re changing their lives forever,” he says. A 2007 SCI Hall of Fame nominee, Gwynn says, “It’s quite an honor to have been nominated. I know there have been a lot of popular people that have been injured and a lot of movers and shakers in the industry, and it’s an honor to be associated with those people.” Gwynn believes, “I’m really no different than any other quadriplegic other than the fact that I’ve got a great support system around me and a great family and we’re just trying to do the right thing.” Gwynn may not race cars anymore, but he remains a strong force and public figure. And he has found a way to feel victory. “I’ve replaced the feeling of winning a race by giving a wheelchair away to someone who needs it most,” says Gwynn. To apply for a wheelchair donation, or to find out more about DGF, visit www.DarrellGwynnFoundation.org.
THE NATIONAL SPINAL CORD INJURY ASSOCIATION The National Spinal Cord Injury Association (NSCIA) is a non-profit membership organization for people with spinal cord injuries, diseases and dysfunction, their families, their related service providers, policy makers, organizations, hospitals and others interested in the issues affecting the spinal cord injury community. Our mission is to enable people with spinal cord injuries, diseases and dysfunction to achieve their highest level of independence, health and personal fulfillment by providing resources, services and peer support.
Become a Member Today.
JOIN OUR GROWING NATIONAL FORCE FOR CHANGE
Name Street City, State, Zip
E-mail (very important, if available)
Please check membership type: Individual with SCI/D Family member or friend Individual service or health care provider Organizational
Check Enclosed Credit Card (Visa, Mastercard, Amer. Exp.) Name on card Credit Card # Expiration Date My donation is $ NSCIA Member Services SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401 Phone (713) 526-6900
FREE! FREE! FREE! Contact Us
I am interested in supporting NSCIA with: Gifts of stocks or mutual funds
Gifts of real estate Including NSCIA in my will Toll free (800) 962-9629 Fax (713) 526-7787 e-mail: firstname.lastname@example.org web site: www.spinalcord.org cut out & return
OPTION-v™ catheters give you the option to eliminate urine bags and are clinically-proven to deliver comfort, mobility, and to make normal daily activities easier. When no bag is attached, urine is stored in your bladder until you squeeze the drainage valve. OPTION-vm™ male valved catheter*
Ask your doctor if bladder cycling using an OPTION-v valved urinary catheter should be part of your care. Call us or visit our website for more information. *Also available: OPTION-vf ® female catheter (not shown)
OPTICON MEDICAL Innovative Products for Urinary Management
7001 Post Road, Suite 100, Dublin, OH 43016 (614) 336-2000 www.opticonmedical.com
Do you have an overactive bladder due to multiple sclerosis or spinal cord injury?
Why has the Rehabilitation Institute of Chicago been the #1 rehabilitation hospital in the country for 18 consecutive years? Knowledge. Our professionals’ thirst for knowledge and our robust continuing education programs provide expertise that is vital in helping our patients live fuller and more productive lives. Collaborate with a group of world-renowned physicians and provide therapy to patients with musculoskeletal/orthopedic and post-surgical diagnoses. This environment supports a functional, evidence-based, treatment-focused approach, including an emphasis in mechanical diagnosis and treatment and neurodynamics. Requires a Bachelor’s in PT and IL license. 2+ years’ experience is optimal, but new grads are welcome. We don’t measure success in terms of our #1 status alone. Our success is measured by each employee’s commitment to enriching the lives of our patients. The strength of our reputation is achieved through the
Visit www.ric.org/jobs or send your resume to email@example.com to bring your strengths to our team.
#1 Rehabilitation Hospital in America Equal Opportunity Employer
The Dignity study needs you! The Dignity study is investigating a potential new medication to control urinary incontinence as a result of an overactive bladder in people with multiple sclerosis and spinal cord injury. For further information: ) call 1-888-61-STUDY (1-888-617-8839) visit www.DignityStudy.com
The protocol for the Dignity study has undergone the appropriate review by regulatory authorities and ethics committees.
Lt. Gen. Russel Honoré... Continued from page 1
as citizens with “special needs” during a disaster when nearly 54 million (or almost 20 percent) of Americans can be identified as living with a disability. “I will argue they are not ‘special’. I would argue, when we’re talking about one in every five Americans, we’re talking about the needs of a community,” said Roth. “Very few groups really mean ‘everybody’ when they talk about preparedness.” Also echoing General Honoré’s commitment to preparedness and call for personal responsibility were the other members of the panel, including: Lt. Colonel Jerry Sneed (U.S. Marine Corps, Ret.), the City of New Orleans’ Director of the Office of Homeland Security and Emergency Pre-
paredness; Judy Sykes, ADA technical assistance specialist and coordinator with the Coalition for Citizens with Disabilities in Mississippi; Kenny Ratton, co-founder and vice president of sales and marketing for Radiant RFID, and Charlie Tubre, systems advocacy specialist for the Advocacy Center, Louisiana’s federally mandated and funded protection and advocacy (P&A) center. Sneed made it clear that while his office is constantly trying to learn the lessons of the past, saving lives should be more of a priority than political correctness. “I come from a culture of 30 years of not ever having to worry about people with disabilities (in the United States Marine Corps),” said Sneed. “We can’t be worried about offending someone or not doing it the right way if lives are in jeopardy. If I have to pick them up and throw them on the train, we’re going to do that.” According to Tubre, Sneed’s no-non-
sense approach was a step in the right direction, but much more needs to be done to ensure that those with mobility disabilities have equal access to evacuation plans and emergency shelters. “If you don’t see in your mix at the table of the planning process informed people with disabilities to keep you apprised of what is happening where our wheelchairs hit the road … you perhaps would be better prepared if you could have some of those voices there with your experts,” said Tubre. Honoré further suggested a mandate that first aid and preparedness be taught in schools. He showed examples of a sample evacuation kit stocked with an electronic memory device (containing important documents, medical records, photos, etc.), food, cash, etc., which he said would make perfect gifts for friends and family. For citizens with disabilities, medical and assistive equipment, medication, personal care
NSCIA board members Don Dawkins and Janeen Earwood in audience.
Panelists (left to right) Marcie Roth, Col. Jerry Sneed, Judy Sykes, Kenny Ratton, Charles Tubre.
Eric Larson gives opening remarks at NSCIA’s town hall meeting.
Panel moderator Marcie Roth.
NSCIA CEO and executive director Eric Larson, Gen. Russel Honoré and NCDR executive director and past NSCIA executive director, Marcie Roth.
Panelist Col. Jerry Sneed addresses the audience.
needs, etc. would be necessary additions to the evacuation kit. Honoré also expressed frustration at the challenges to obtaining release of medical records at the time of an emergency, “That wasn’t the purpose of HIPPA.” For people living with disabilities, it is especially important to keep your medical records handy in case of emergency, he added. While Honoré’s speech focused mainly on emergency preparedness in general, the panel discussion’s focus was the inclusion of people with disability in that process. “Emergency preparedness, as you heard General Honoré talk about, is a moral imperative in my mind” said Roth. “This is a very important discussion, (but) not a lot of folks make time in their day or in their week or work to focus on this. If people think that somebody else is taking care of all this for them, they’re mistaken. In fact, our community remains dangerously un-
General Russel Honore talking with Marcie Roth and Susan Mazrui.
General Russel Honoré.
Panelist Judy Sykes.
November/December, 2008 prepared.” Panelists generally were in agreement on the importance of personal responsibility as a key part of the process. The programs and shelters must be made available, but the citizens must enlist and register and prepare themselves for maximum inclusion in such disaster preparedness and ultimately, carrying out these plans in the case of an emergency. Sneed explained, “Since Hurricane Katrina, we have worked hard to refine the plan to take any person, no matter what the reason they can’t leave, to come up with a plan to help them.” This plan was implemented for the first time during Hurricane Gustav. He says, “We feel we evacuated 93 percent of our citizens. The biggest key to that success was our citizens listening.” Sykes agreed that people must be willing to take steps to help themselves and each other. She simply suggests, “Get to know your neighbors.” She says, “It is so important to know who lives beside you, in front of you, and behind you. When something happens, you can go to them, they can come to you. We can help each other create our plans.” Another important point stressed by the panel referred to ensuring that all emer-
gency shelters are made accessible. Sykes says, “We’re segregating, and we need to stop it.” Roth states two points to that fact. “If we concentrate all of those resources in the ‘special needs shelter’ and that shelter is at ground zero, and you end up disbursing people to other shelters that have not adequately prepared for people with disabilities, we have missed a very important opportunity.” Secondly, she said, “I think it is of the utmost importance that we preserve those medical facilities for the people that need it.” NSCIA intends to continue this dialogue between government, business and concerned advocates. “If we expect to create a system to serve everyone in time of emergency, we have to include everyone in creating that system,” said K. Eric Larson, NSCIA executive director and CEO. “And ‘everyone’ includes people with disabilities.” Roth noted the importance of not separating people with disabilities from their necessary assistive belongings, explaining that for people with disabilities, getting separated from their equipment with no way to track the assistive technology is a huge problem. “Customized equipment could take, on a sunny day, three to six months to
replace. When large numbers of people need to have equipment replaced at the same time, you can imagine that will take a longer period.” This problem has proved to be costly not only for the individual and their insurance, but for the state as well. Roth explains, “When people were separated from their families and their natural supports, they couldn’t provide for themselves. Those individuals were dependent on systems and sometimes they ended up in nursing facilities. They didn’t need to be providing for the people that live independently when they are not in the middle of a disaster. Those medical facilities needed to be able to be available for people that had additional medical needs.” Ratton said his company is working on a way to keep people connected to each other and to their belongings through a tracking system, similar to that used when delivering packages. Using such technology, Ratton says, “With Hurricane Gustav and Hurricane Ike we were able to reunite families in minutes instead of weeks.” Panelist Tubre notes that, “Post Hurricane Katrina, while people evacuated with special needs were left for several days, many of them became quite ill. They developed pressure sores, which years later they are still dealing
with at tremendous cost.” Tubre believes leaving assistive technology with those who need it will avoid such secondary conditions.” Honoré also stressed the importance of the business community being involved in the solutions and for them to also plan ahead. He says, “When they (phone companies) got rid of the landline networks and we went to digital phones, there is a responsibility of businesses to take into account what we are going to do.” He also says, “These big companies need to be ready for their corporate responsibilities. You put these little stores out of business over the years, now you have an obligation.” “We’re seeing some progress in those areas that have had practice with various disasters,” noted Roth. “Of course, more work needs to be done. But the dialogue is open and thanks to the tireless work of people such as General Honoré, NSCIA and the esteemed members of this panel, emergency preparedness problems, and those for people with disabilities in particular, are certainly being addressed.” A full transcript of Honoré’s speech and the panelist’s discussion is available at www. spinalcord.org. Contact NSCIA’s resource center to find out how you can locate emergency preparedness resources in your state.
Hospital Members of NSCIA In addition to our more than 23,000 individual members, NSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people with spinal cord injury and disorders. Visit www.spinalcord.org for a full list of Hospital Members with links to their web sites. UAB Model Spinal Cord Injury Care System-Spain rehabilitation Center Birmingham, AL (205) 934-3283
Northwest Regional Spinal Cord Injury System-University of Washington Seattle, WA (206) 685-3999
The Rocky Mountain Regional Spinal Injury System-Craig Hospital Englewood, CO (303) 789-8306
North Memorial Medical Center Robbinsdale, MN (763) 520-5200
National Capital Spinal Cord Injury Model System National Rehabilitation Hospital Washington, DC (202) 877-1425 (202) 877-1196 Georgia Regional Spinal Cord Injury Care SystemShepherd Center, Inc. Atlanta, GA (404) 350-7591
Brooks Rehabilitation Hospital-University of North Florida Jacksonville, FL (904) 858-7600 Pinecrest Rehabilitation Hospital (CARF) Delray Beach, FL (561) 495-0400 Baylor Institute for Rehabilitation Dallas, TX. (800) 422-9567
University of Michigan Model Spinal Cord Injury Care System Ann Arbor, MI (734) 763-0971
Healthsouth Rehab Hospital of Baton Rouge Baton Rouge, LA (225) 927-0567
Northeast Ohio Regional Spinal Cord Injury System Cleveland, OH (216) 778-8781
Cardinal Hill Rehabilitation Hospital Lexington, KY (859) 254-5701
University of Pittsburgh Model Center on Spinal Cord Injury Pittsburgh, PA (412) 586-6941
Moses Cone Health System Greensboro, NC (336) 832-7000 Northridge Hospital Medical Center Northridge, CA (818) 885-8500 Ext. 3669
Santa Clara Valley Medical Center San Jose, CA (408) 793-6434 Regional SCI Care System of Southern California Rancho Los Amigos Downey CA (582) 401-7111 Tulane Inpatient Rehabilitation Center Metairie, LA (504) 988-5800 Madonna Rehabilitation Hospital Lincoln, NE (402) 486-8296 The Rehabilitation Institute of Kansas City Kansas City, MO (816) 751-7900 The Institute for Rehabilitation and Research (TIRR) Houston, TX (713) 797-5946 Healthsouth Rehabilitation Hospital Columbia, SC (803) 254-7777 SSM Rehab St. Louis, MO (314) 989-2444 Froedert Memorial Lutheran Hospital Milwaukee, WI (414) 805-3000
Northern New Jersey Spinal Cord Injury System Kessler Institute for Rehab West Orange, NJ (973) 243-6849 The Williamsport Hospital and Medical Center Gibson Rehabilitation Center Williamsport, PA. (570) 321-1000 Woodrow Wilson Rehab Center Fishersville, VA (800) 345-9972 Adventist Rehabilitation Hospital of Maryland Rockville, MD (240) 864-6000 Carolinas Rehabilitation Charlotte, NC (704) 355-4300 Mount Sinai Spinal Cord Injury Model System New York, NY (212) 659-8587 Immanuel Rehabilitation Center Omaha, NE (402) 572-2121 Organizational Members of NSCIA Florida SCI Resource Center Tampa, FL (800) 995-8544 Push to Walk Bloomingdale, NJ (973) 291-6370
RTI sci arm Feb2008
The world’s leading FES leg cycle is now an FES arm cycle too. It's the breakthrough therapy you’ve been asking for.
Van Brooks C5 RT300 Rider
FES cycling is now available for your arms, from the established leader in FES cycles, Restorative Therapies. The same advanced technology as our leg cycle, the same compact design, the same remarkable performance. For a whole new part of the body. Reverse atrophy, reduce spasms, improve circulation and increase range of motion in your arms and your legs.Without transferring. Automatically. Monitored via the Internet. It’s also suitable for children as young as four years old. And it’s only from Restorative Therapies. Take your therapy higher with the RT300. You can.
Call us at 1-800-609-9166, or visit restorative-therapies.com
Shop for a Cause Buy great products you need at a competitive price – and support NSCIA at the same time!
• • • •
Sun Artisan Odor Eliminator NaturalFit Handrims Books by authors like Allen Rucker and Gary Karp Music by ProfessirX
• Wheelchair accessories by Case Logic • Dining with Dignity specialty flatware • And many more products perfect for your lifestyle!
www.spinalcord.org/store NSCIA Helpline: 800-962-9629
Summit Express Medical Supply Tired of suffering from Urinary Tract Infections? If you are an intermittent catheter user, help is on the way.
Contact Summit Express Medical Supply at 1-888-269-6605 and ask about the â€œclosed systemâ€? catheter. Easy Â&#x;
to use and delivered right to your door.
All Catheters are LATEX FREE and come Â&#x; with everything you need.
Why wash dirty catheters and risk infection? Specializing in Intermittent Sterile Catheters
Call TODAY 1-888-269-6605
or email us at firstname.lastname@example.org for a FREE BACKPACK and a FREE SAMPLE. We are an Accredited Medicare Provider.
Summit Express Medical Supply
SPECIALIZING in intermittent sterile catheters.
New Mobility is a colorful lifestyle magazine for wheelchair users, focusing on education, work, love, sex, parenting, art, recreation, travel and much more.
Kids on Wheels is a dynamic quarterly magazine for young wheelchair users and the adults who care about them.
* Regular 12-issue subscription is $27.95, US only.
(Your subscription includes the kidsâ€™ and adult issues)
* Reg $14.95 per year, 4 issues U.S. Only.
#ALL TODAY TO START YOUR NEW SUBSCRIPTION
The BEST in discount medical products
Spinalcord.org is looking for experienced volunteers to moderate our on-line forum Please contact us at email@example.com
800-633-2139 exmed. net Ostomy Respiratory Personal Care Incontinence Infection Control Foot Care Skin & Wound Care Urologicals Wheelchairs & Accessories 08.indd 99
N.G00 I P IP $95
SHers over E RE ord
12/10/07 12:37:40 PM
Call for a FREE Catalog
1/17/08 5:03:16 PM
NeuroEDUCATOR 4 Neuromuscular therapy to return or improve voluntary muscle control. See the signal getting through to the muscle.
State-of-the-art functional electrical stimulation (FES) ergometry to give those with SCI and other neurological conditions the healthful benefits of using their leg muscles again.
Neuromuscular electrical stimulation (NMES) providing the potential for the spinal cord injured patient to stand and ambulate.
over matt e
Parastep by Sigmedics
Ne h uroSwitc
Quadriplegia? Loss of speech? Unable to use contact or breath switches? NeuroSwitch owners control Assistive Technology text and voice communicators, internet and email programs, TV remotes and approved powered devices. Fast, easy, painless, portable.
333 North Broad Street Fairborn, Ohio 45324 USA (937) 879-0734 • (937) 879-5211 fax www.ERGYS.com • info@ERGYS.com
ERGYS®, NeuroEDUCATOR®, and “You are the moving part” are trademarks of Therapeutic Alliances Inc. Parastep® is a trademark of Sigmedics Inc. NeuroSwitch is a trademark of Control Bionics Inc.
SCI Hall of Fame... Continued from page 1
that recognized true achievement, not mere survival. The SCI Hall of Fame was created to celebrate and honor individuals and organizations that have made significant contributions to quality of life and advancements toward a better future for all individuals with spinal cord injury. The first award of the evening was presented to this year’s Emerging Leader, Jessica Greenfield. Greenfield, who survived a T-4 SCI as a high school senior, was recognized for her efforts with her camp GLAHM (Good Life and Healthy Minds). This week-long camp, started in 2006, helps in building the self-esteem of girls by catering to the special needs of these young women in areas of beauty, skin care, nutrition, fitness and clothing. After Greenfield’s acceptance speech, in which she thanked her family, doctors, boyfriend and NSCIA for the opportunity, a screen onstage played a video of famed jazz musician Wynton Marsalis introducing his father Ellis Marsalis and bringing the Ellis Marsalis quartet to the stage. The sounds of piano, drums, bass and xylophone filled the room as guests bobbed their heads to the music. Later the audience was treated to the fresh sounds of rising jazz star Jonathan Batiste and his trio.
NSCIA president Pat Maher.
NSCIA executive director and CEO Eric Larson.
Both Marsalis and Batiste were welcomed back throughout the evening as it became apparent that this intimate gathering of persons with disabilities, SCI professionals, their families and friends were being treated to a truly wonderful and special evening. As Rucker told audience members, “Now you’ll leave New Orleans really knowing what jazz is all about.” A video montage of special moments from past SCI Hall of Fame galas played as the induction ceremony was well under way. Maher reminded the audience of the importance of this annual event. “The SCI Hall of Fame recognizes these extraordinary people who symbolize our mission, to achieve our highest, personal fulfillment through resources, services and peer support.” Accepting their induction in person were: Laura Cohen, Principal for Rehabilitation and Technology Consultants in Atlanta, GA; Susan Mazrui, disability and consumer advocate for AT&T; Kathleen Dunn, clinical nurse specialist and rehabilitation case manager for the SCI Center at the Veterans Affairs San Diego Healthcare System; Carmen Jones, Founder of Solutions Marketing Group; Kendra Betz, Prosthetics Clinical Coordinator for the Prosthetics and Sensory Aids Service at the Veterans Administration Central Office; Edward Hall, past President of the National Neurotrauma Society and researcher in Basic Science; and Marty Ball, wheelchair sports veteran. The following inductees were not in attendance, though they sent their gratitude: Bernie and Billie Marcus, benefactors through the Marcus foundation and more; David Apple, Jr., M.D., former Medical Director at the Shepherd Center and an orthopedic surgeon; Marc Buoniconti, ambassador for the Miami Project and founder of the Marc Buoniconti Foundation; Robin Williams, major contributor to SCI research through the Christopher and Dana Reeve Foundation; Jennifer Sheehy Keller, Director of the National Institute on Disability and Rehabilitation Research and Director of Policy and Planning in the Office of Special Education and Rehabilitative Services in the US Department of Education; Alana Shepherd, co-founder of the Shepherd Center; Senator Edward Kennedy, the senior Democrat on the Health, Education, Labor and Pensions Committee; Harriet McBryde Johnson (1957-2008), author and activist; James Krause, Ph. D., Professor and Associate Dean for Clinical Research in the College of Health Professions at the Medical University of South Carolina; and Luis Gallegos, Ecuadorian Ambassador to the United States and Chairman of the Global UN Partnership for Inclusive Information and Communication Technologies and President of the International Rehabilitation Foundation. A delicious dessert reception closed the evening as inductees posed for photos together and networked with others. NSCIA plans to continue acknowledging all SCI Hall of Fame members throughout the year with features in SCILife, as well as keeping the general public and NSCIA mem-
(left to right) Board member Andy Hicks, Mrs. and Mr. Ed Hall (2008 SCI Hall of Fame inductee for Research in Basic Science) and NSCIA president Pat Maher
New Orleans brass band, the Salty Dogs lead attendees from the opening reception in to the main room for the 2008 SCI.
bers informed of any current and ongoing achievements by all nominees. The evening was presented by AT&T and supported by a host of generous sponsors, including platinum sponsors Medtronic Foundation, as well as Motorola and the Motorola Foundation, New Mobility, Acorda Therapeutics, Allergen, AARP, Abilities Expo, Alseres Pharma-
ceuticals, Christopher and Dana Reeve Paralysis Foundation, Independence Technologies – a Johnson & Johnson Company, Pfizer and Sunrise Medical, Astra Tech and Shepherd Center, Ability Magazine and HDI Publishers. A special thanks also went out to the Craig H. Neilsen Foundation for their 2007 grant to support the SCI Hall of Fame.
a personal injury law firm different?
DIANNE HENDERSON R.N., B.A. Psych., M.Ed.,
knowledge and skill sets in the areas of spinal cord and brain injury allow GLUCKSTEIN & ASSOCIATES LLP to consult directly with all of the healthcare providers.
in combining more than
a century of legal expertise BERNARD GLUCKSTEIN,
with medical & rehab
TURN WE ENSURE THAT
you and your loved ones receive the absolute best in health care delivery.
“OUR MULTIDISCIPLINARY teams’ goal is to protect your rights while advocating for maximum compensation and recovery of lifestyle.”
P E R S O N A L
& A SS OCI AT E S
I N J U R Y
L A W Y E R S
GLUCKSTEIN & ASSOCIATES LLP, and there is no such thing as business-as-usual here.
Financial Assistance Available through Fundraising By Bill Fertig, NSCIA Resource Center Manager and Lynn Coughlin Samson, Esq., Executive Director of NTAF
n the first days and weeks after a spinal cord injury (SCI) or onset of a spinal cord disease, the ability of the individual and his or her family to access all available resources is vital. The injured person and their extended network of family and friends must address many and varied obstacles to begin to rebuild their lives and they need to do this all – sometimes all at the same time. The information specialists of the National Spinal Cord Injury Association (NSCIA) Resource Center can help identify and evaluate appropriate SCI rehabilitation hospitals, highlight home modification resources and
A Structured Solution An Expert in Resolving Physical Injury Cases Offers Suggestions for Recent Accident Victims By Janet Rubin Fields
f you’ve been in an accident and are negotiating a lawsuit settlement, you are literally setting the foundation for your future. The decisions you make today, especially if your injuries are severe, may be the difference between financial security and instability, as you get older. America is experiencing its worst financial crisis in 50 years and many claim that the country is already in a recession. Regardless of what happens next, there is no doubt that financial uncertainty is everywhere – and while we are unable to predict when the pendulum will swing, settling your case empowers you to control the result and manage the proceeds. So with your settlement looming and the stakes so high, what do you do? For starters, be deliberate. The mediation process allows you to resolve built-up stress from the accident, prepare for a “new beginning” and plan for your financial future needs. Second, consult with a financial expert experienced in helping those who have been injured in conjunction with the mediation. This provides the neces-
connect family members with a myriad of resources in their own state. NSCIA staff provides direction when the road ahead seems impossibly confusing and uncertain. Among the realities that set in after SCI is the realization that the person’s regular system of financial support has been disrupted just as the injured person’s body has been damaged. There may already be many forms of financial assistance in place for the injured person and their family such as health insurance and government entitlement programs but very often resources needed to remake the life of the newly spinal cord injured person simply do not exist. That is when fundraising is needed and when the Catastrophic Injury Program of the National Transplant Assistance Fund (NTAF) can guide the way. Lynn Coughlin Samson, Esq., NTAF Executive Director conducted a training session on NTAF services for NSCIA national staff members and chapter representatives nationwide. The following are quotes from that training illustrating how an individual with an SCI and her friend were supported by the NTAF fundraising program after being referred by NSCIA: Allyn: “When I called NSCIA, they referred me to the NTAF Catastrophic Injury Program when I asked about financial assistance. I did not understand at the time the power of community based fundraising to
help Denise (my friend) pay for uninsured medical care, health insurance premiums and home aide costs. These were costs that Denise could not even fathom after her injury, costs that may have meant financial crisis had we not been able to fundraise. NTAF Patient Services Representatives taught us the how to’s of fundraising. With the help of NTAF, our community did several fundraising events including a dinner and auction raising over $100,000. NTAF provided flyers, instructions and forms for in-kind gifts, and access to a personal webpage for Denise that allowed secure on-line donations. The advantage of working with NTAF was that the funds raised were tax deductible and did not affect Denise’s income as she sought other government assistance. The funds raised are available to pay medical bills.” Denise: “I was really not tuned into the whole fundraising effort, as I was focused on restoring my health and independence. I do remember feeling incredibly grateful and humbled by the efforts put forth by my friends. The funds raised were an invaluable assistance paying for medical bills and for home health aides while I got my situation sorted out with the state. I would encourage every family (of someone with a catastrophic injury) to allow their community to come alongside them to fundraise. I have come to recognize that communities want to help,
but don’t know how. NTAF gives communities a vehicle and instructions to make a real difference in the lives of healing people.” NTAF has assisted newly injured persons raise funds for adapted vans, durable medical equipment, uncovered medical bills and personal care services as above. Lynne Coughlin Samson, Esq. came to NTAF as Executive Director three years after her stepdaughter was paralyzed and her family’s community “stepped up” to conduct a fundraising campaign through NTAF. Samson believed so strongly in this model providing financial assistance to patients and as an avenue for assistance for family and friends, that she joined the organization to share the message when the opportunity arose.
sary knowledge to make an informed decision on whether to settle your case. Financial planning is difficult even in the best circumstances and given today’s uncertainties and your need for specialized care, you have little margin for error. Financial experts can help in two ways. First, they can create a detailed projection of your living, medical and rehabilitative needs. Second, they will probably have a good understanding of federal, state and private benefit programs for which you or a family member may be eligible. While the cost of medical and rehabilitation care continues to spiral upward at roughly twice the inflation rate, the U.S. stock market is at about the same level it was in 1998 – in other words, during a 10-year period, the annualized after-tax return is approximately zero. This imbalance can create the risk of a shortfall as you get older – and for many accident victims, this may have negative implications. To minimize this, you can consider allocating funds into a “structured settlement” (www.nssta.com). A structured settlement, which must be set up prior to your final settlement, allows you to set up a payment stream tailored to your future needs. You can plan funds for future operations, rehabilitative care or equipment replacement such as a new wheelchair. These payments can be guaranteed for a specific period or for your life or even for the life of your spouse or child. All payments are funded through a life insurance annuity, which means they are backed by multiple layers of state consumer protection regulation. That also means your payments aren’t affected by world events or sudden economic changes. In addition to the guaranteed income, the federal government makes a structure financially appealing by exempting your payments from taxes on income, interest, dividends and capital gains. Another benefit:
If your payments are made irrevocably into a special needs trust, they are not counted against Medicaid and SSI income limits. Many plaintiffs choose to combine these two recommendations by working with a structured settlement consultant to create their payment stream. Many structured settlement consultants have specialized expertise in designing payment streams that anticipate the medical and living needs of spinal cord injury victims and others. Nevertheless, a structured settlement isn’t always the full or complete solution.. Successful settlements are achieved when a survivor knows they can receive six months or more of up-front cash for emergencies. Make sure you have this cash reserve established before you consider structuring any additional part of your settlement. Settlement amounts of less than $10,000 may not deliver sufficient tax benefits to justify the effort and may not create the incentive for a structure. Most experienced neutrals in anticipation of settlement, will encourage the parties and their counsel to arrange for a professional consultant be present at mediation to help you decipher whether a structure is worthwhile to answer your questions on varied structured plans, their interest rates and tax benefits. Finally, remember, this is the settlement of your case and the outcome affects your life just as the accident changed your life. Not only is it important to be financially secure for the future, I encourage plaintiffs to enjoy life and set aside a portion of their proceeds for a vacation or whatever else is on their “wish list.” As a mediator who has resolved thousands of cases during the past 11 years, I have had the occasion to observe survivors of many accidents. What is almost as tragic as the injuries sustained from an accident, is when someone loses his or her one opportunity for guaranteed security due to poor
financial decisions. The result of this, or even from bad timing or things outside their control, can be devastating.
NTAF helps transplant and catastrophic injury patients afford critical but uninsured medically related expenses through fundraising guidance, patient support and resources, as well as financial assistance. For more information visit the catastrophic fundraising section at www.catastrophicfund.org or call (800) 642-8399. Connecting people with NTAF is just one example of a resource referral that NSCIA provides. For assistance from the information specialists of the NSCIA Resource Center, on this or any topic, contact firstname.lastname@example.org or phone (800) 962-9629 Monday through Friday 8:30 a.m. - 5:00 p.m. Eastern time.
In 2008, Janet Rubin Fields was named a Top Neutral in California by the Daily Journal, “Best Lawyers in America” in Alternative Disputer Resolution and a Southern California “Super Lawyer.” She is a mediator and arbitrator in Los Angeles and Orange Counties. More information about structured settlements can be found at: StructuredSettlement.info.
“Give 60” For 60 years NSCIA has led the way to a better life for people with spinal cord injury and disease.
Help us help others, like we’ve helped you.
Please support “Give 60” at spinalcord.org/give60. Make a secure donation at
Scuba Diving By Jim Gatacre II
he driving force behind accessible scuba is the idea that those with disabilities can learn and participate in scuba diving. Anyone with a physical disability can learn to scuba dive if they pass the physical examination for diving, which is exactly the same as it is for those without physical disabilities. Fitness for diving is not about physical prowess; it is about medical issues such as seizure disorders and asthma. Scuba diving is a great sport for adventurous people with paraplegia, quadriplegia or hemiplegia over the age of 10. It is important to understand that people living with spinal cord injuries (SCI) face a greater risk for decubiti due to hard and abrasive surfaces, such as boat decks, beaches and coral. There are also greater risks at the water’s surface due to the inability to use fins if
the diver is not properly trained to accommodate this difference. However, these risks can be greatly reduced if you receive proper training and follow the rules for scuba diving, and there are only a couple of critical rules to remember. Scuba divers always dive in a buddy team so if one of them gets into trouble they have their buddy to help them. Therefore, a big issue for divers with disabilities is the buddy system because some may not be able to perform a rescue if their buddy gets into trouble. Another issue is that due to certain disabilities, such as a quadriplegia, a diver may need assistance swimming or operating their equipment. Their dive buddy does this for them, which requires the buddy to have a high level of diving skill. The Handicapped Scuba Association (HSA) was founded in 1981 to ensure people with disabilities have access to proper training and diving opportunities. We worked within the diving industry with the top people in diver education to accomplish this. It is important to note that the diving industry has never been opposed to people with disabilities scuba diving, but want to be sure everyone is properly trained. The HSA is what they call in the diving industry a “Certifying Agency.” We have our own Physical Performance Standards and training for certifying
John Visicaro boards a dive boat in Bonaire.
How Protection and Advocacy Services May Help You By Len Zandrow, Esq. NSCIA General Counsel
rotection and Advocacy (P&A) agencies are among the best advocates for individuals with disabilities. They break down barriers, make all aspects of society more accessible and work to overcome past discrimination. P&A’s have the authority to provide legal representation and other services. Where appropriate and available, they may provide training and technical assistance, legal support and legislative advocacy. The concept of P&A agencies was first created in 1975 in response to prominently
reported abuse and neglect in mental health care in New York. Thus, P&A systems were first incorporated into the renewal of federal developmental disabilities legislation. Eventually, Congress expanded the role of P&A services from the mental health sector to a variety of other legislative contexts and programs including rehabilitation and assistive technology. For example, just within the past decade, Congress has authorized P&A programs in the Ticket to Work and Work Incentives Improvement Act (TWWIIA), which assists Social Security beneficiaries who wish to return to work and the Help America Vote Act (HAVA), which secures election access for voters with disabilities. Congressionally mandated P&A systems and related Client Assistance Programs (CAP) have grown into a nationwide network with offices in each state. The P&A/ CAP system is now the largest provider of advocacy services for persons with disabili-
Julia Dorsett, paralyzed at the T6 level, and Jim Gatacre diving in Cayman Brac, Grand Cayman Islands.
Open Water Scuba Divers with disabilities, Dive Buddies & Instructors. What is unique about the HSA is that it was created as a result of the founder’s (Gatacre) sustaining a disability. Floundering for a sense of new identity, he learned about scuba diving while attending the University of California, Irvine (UCI). The first pilot program was conducted through the Veterans’ Office on UCI Campus in 1975. Throughout the entire development and running of HSA, people with disabilities have been the key players. The HSA functions from the point of view of the persons with disabilities. Although there have been no studies regarding the health and social benefits, many participants believe that scuba has a large and positive impact on those that become divers. From a health standpoint scuba requires the person to be very physically active, as every muscle that still functions will be working. To get involved in scuba diving, visit our website, locate an HSA scuba instructor and learn to dive. Then you can join us on an HSA adventure such as those listed below. Through the HSA website you can learn about future HSA dive trips and receive support from the HSA at email@example.com or go to our website at www.hsascuba.com.
HSA is conducting two accessible dive trips in 2009: Malaysia 2009 will include a tour of Kuala Lumpur city, Colors of Malaysia Parade, six days of incredible diving & Borneo tours in the orangutan reserve and a river trip to observe Proboscis monkeys and other wildlife; and a trip to Hawaii (the Big Island) for great diving with the giant Manta Rays, turtles, sharks, and visits to six of the world’s climatic environments.
ties in the country. This network serves a wide variety of purposes guarding against abuses, advocating basic legal rights and ensuring accountability in health care, education, employment, housing, transportation and criminal justice. One area of particular need and interest for the SCI community is in the administration of Social Security benefits. In 1999, the TWWIIA program was enacted to help beneficiaries of Social Security with an overall goal of returning to work. This legislation, codified at 42 U.S.C. sec. 1320b-21, includes a P&A named PABSS (Program for Beneficiaries of Social Security) that helps persons with disabilities obtain information, advice and advocacy in a variety of areas as long as they are generally related to employment. For example, this P&A is authorized to provide advocacy and related services to individuals with disabilities in the areas of disability benefits and work incentives, rights and conditions of employment, wage and hour issues, vocational rehabilitation and preparation, health care, rights and reasonable accommodation under the Americans with Disabilities Act access to and disputes with community services, special education and transition issues, transportation con-
cerns and housing problems. Although P&A agencies are not required to take every case, whenever their services are available, they are generally provided free of charge. The PABSS agency is not authorized to provide assistance in areas such as direct cash assistance; advice or representation with personal injury, malpractice or criminal defense matters; attempts to obtain guardianship and property and probate issues. In addition, this P&A agency is not permitted to offer advice or advocacy on issues that are not generally related to the disabled beneficiary’s employment nor may it assist with an initial Social Security disability determination. Instead, help with Social Security determinations should be sought from agency personnel, legal aid services or private attorneys. To explore whether a P&A may help you with a Social Security matter or other legal issue, you should consult the National Disability Rights Network:
SCUBA RESOURCES] • PADI (Professional Association of Diving Instructors) – www.padi.com, Ph. 800.729.7234 • NAUI (National Association of Underwater Instructors) – www.naui.com, Ph. 800.553.6284 • HSA (Handicapped Scuba Association International) – www.hsascuba.com, Ph. 949.498.4540 • IAHD (International Association for Handicapped Divers) – www.iahd.org • Eels on Wheels – www.eels.org • Underwater Safaris – www.hsascubaillinois.com, Ph. 773.348.3999 • The Diveheart Foundation – www.diveheart.org, Ph. 630.964.1983 • Handi-Divers, LLC – www.handi-divers.com.
National Disability Rights Network 900 Second Street NE, Suite 211 Washington, DC 20002 (202) 408-9514 fax: (202) 408-9520 email inquiries: firstname.lastname@example.org
NSCIA Member Services SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401 Phone (713) 526-6900
Toll free (800) 962-9629 Fax (713) 526-7787 e-mail: email@example.com web site: www.spinalcord.org
cut out & return
representatives, researchers, individuals, and families – all of whom share a commitment to maximizing the quality of life for people with spinal cord injury and disease.
To find out more about the SCI Hall of Fame or to see a list of previous inductees or this year’s nominees, visit www. November/December, 2008 17 spinalcord.org.
Who’s Who in American Law 1985 through present
Attorney Ronald R. Gilbert
Advocate forthe theSpinal Spinal Cord Injured Attorney for Injured Put nation's top personal injury specialist to workbeen for you.injured Ron Gilbert has(1) helped if the you, a friend or loved one, has by: A over 200 spinal cord injured persons in 35 states collect the compensation they deserve. product or use of a product (e.g. helmet, vehicle even if it is a If you suffered a spinal cord injury, maybe he can help you.
one vehicle accident and you are the driver, ladder, trampoline
more), (2) from On successful someone property (e.g. falls, gunshot, Compensation andelse’s responsible litigation can open doors to a betrecreation events more), (3) a medical ter life. With the or highathletic cost of disability related expenses, youDuring need to know all your opprocedure as a result of a prescription drug — YOU MAY BE tions. It takes anor experienced, committed, caring specialist to make the system work for ENTITLED TO ECONOMIC RECOVERY. you. Put the nation’s top personal injury specialist to work for you. Ron Gilbert has helped over 300 spinal cord injured in 35 legislation states collect thespinal compensation they deserve. If ° persons Helped sponsor benefiting cord injured persons. you have suffered a spinal cord injury, he will try to help you. Among Ron Gilbert's many prevention and advocacy efforts, he has:
Founded the Foundation for Aquatic Injury Prevention and the Foundation for Compensation from successful and responsible litigation Spinal Cord Injury Prevention, Care and Cure (www.fscip.org). can open doors to a better life.
° Some Servedof as Secretary and a member of the Board ofto Directors the spinal cord Ron Gilbert’s many efforts help of the National Spinal Cord Injury Foundation. community include: ° • Received appreciation forbenefitting Prevention work from thecord injured Helpeda certificate sponsorof legislation spinal Michigan PVA. persons.
Served Secretary and member of the Board ° • Served as aas member of the SCI/TBI Advisory Committee - Michi- of Directors of the Spinal gan and National Vice Chairman 1988 Cord - 1996.Injury Foundation. • Received a Certificate of Appreciation for Prevention work
Time may be working against you. The rule of law called the Statute from Michigan PVA. of Limitations puts a limit on the time in which you may file an injury Time may working against you. ruleseriously of law called the claim. This time be can be as short one-year. If you haveAbeen injured andof haven't talked with a lawyer, time mayin bewhich runningyou out. may file an Statute Limitations puts a time limit Don't wait. It won't cost time you a cent talk with us. And may be the If you have injury claim. This can tobe as short as itone year. most important telephone call you'll evermay make.be running out. Don’t wait. been seriously injured, time
There is no cost to talk to Ron.
Got a Story? Share it! “I know what it’s like to face a life changing event like a spinal cord injury, and how much the right support can mean to someone in those first few days and weeks after the injury. I’ve been truly blessed in my life and this is a chance for me to make a difference for others.” -- Soul music legend and SCI Hall of Fame member, Teddy Pendergrass
NSCIA is looking for first hand member stories that carry a message of hope and tangible support for people with new spinal cord injuries or disease.
If you’d like to share your story, or know someone else who might, visit www.spinalcord.org/mystory
To get help, started, call call Ron Gilbert today fortoday a free review your legal options. proFor Ron Gilbert for aof free review ofHe'll your vide legal help as well as assistance in planning, networking and coping with the physlegal options. He’ll provide legal help as well as assistance in ical, emotional and and legal challenges face. planning, coping withyou the physical, emotional and other
challenges you face.
1-800-342-0330 1-800-342-0330 Ronald R. Gilbert, PC Cases Handled Personally Cases Handled Ronald R. Gilbert, P.C. www.fscip.org / firstname.lastname@example.org Nationwide www.fscip.org / email@example.com Personally Nationwide www.aquaticisf.org firstname.lastname@example.org If you have suffered a spinal cord injury, call today to receive a free legal consultation If you have suffered a spinal cord injury, call Injury today to receive a and complementary membership in the National Spinal Cord Association, includfree legal consultation and complimentary copy ofandSpinal ing the publication Options, a complementary copy of Spinal Network a handNetwork a handbook legal book on legaland options for survivors ofon spinal cordoptions injuries. for victims of spinal cord injuries.
OPTIONS FOR SURVIVORS FOR VICTIMS OF OF SPINAL CORD INJURIES
SPINAL CORD INJURIES FinancingManaging The Future: Disability Managing Re° Financing The•Future: Disability-Related Expenses lated Expenses Liability, Compensation And Your Rights • ° Prevention: Helping Others Avoid Accidents • Legal Options Legal Action ° Liability, Compensation And Through Your Rights • Improving Safety ° Legal Options• Finding And Choosing An Attorney • Getting Help: A Guide To Organizations ° Improving Safety Action Details, GoLegal To Ron’s Website — • ForThrough www.fscip.org For Legal Options And ° Finding and Choosing An Attorney Professional Help. ° Getting Help: A Guide To Organizations
NSCIA Chapter & Support Group network ARIZONA Support Groups East Valley Support Group (COMPASS) Phone: (602) 241-1006 Contact: Pauline Staples E-mail: email@example.com Flagstaff Support Group Phone: (928) 527-8567 Contact: Al White Grupo de apoyo en Español Gentiva Rehab Without Walls, 7227 N 16th St #107, Phoenix, Arizona Phone: (602) 943-1012 Contact: Diane Prescott Support Group Phone: (623) 209-0311 Contact: Gary Hershey SCI Women Support Group Banner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307 Contact: Jill Greenlee, CTRS CALIFORNIA CHAPTER WYNGS, NSCIA 7900 Nelson Rd., Panorama City, California, 91402 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano Website: www.wyngs.org E-mail: firstname.lastname@example.org Support Groups Southern California SCI Support Group Casa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, California, 91769 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano, WYNGS Email: email@example.com Leon S. Peter’s Rehabilitation Center P.O. Box 1232, Fresno, California, 93715 Phone: (559) 459-6000 Ext. 5783 Contact: Ray Greenberg E-mail: firstname.lastname@example.org CONNECTICUT CHAPTER Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, Connecticut, 6492 Phone: (203) 284-1045 Contact: Jeff Dion Website: www.sciact.org E-mail: email@example.com DISTRICT OF COLUMBIA CHAPTER SCI Network of Metropolitan Washington, NSCIA Plaza West 9, 51 Monroe Street, Rockville, Maryland, 20850 Phone: (301) 424-8335 Fax: (301) 424-8858 Contact: Jesse Parker E-mail: firstname.lastname@example.org Contact: David Burds Website: www.spinalcordinjury.net E-mail: email@example.com FLORIDA Support Groups Peer Support Contact 313 Spider Lily Ln, Naples, Florida, 34119 Phone: (239) 353-5894 Contact: Mindy Idaspe E-mail: firstname.lastname@example.org Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, Florida, 32901 Phone: (321) 984-4600 Contact: Ellen Lyons-Olski E-mail: email@example.com Pinecrest Rehabilitation Hospital Spinal Cord Education Group 5360 Linton Blvd., Del Ray, Florida, 33484 Phone: (561) 495-3048 Contact: Mary Kaye Email: Mary.firstname.lastname@example.org Phone: (561) 495-3636 Contact: Christine Grant
Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, Florida, 32308 Phone: (850) 656-4800 Contact: JoAnna Rodgers-Green Florida Rehab. and Sports Medicine 5165 Adanson St., Orlando, Florida, 32804 Phone: (407) 823-2967 Contact: Robin Kohn Email: email@example.com Phone : (407) 623-1070 Contact: Carl Miller HEALTHSOUTH - Support Group 90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866 Contact Vicki Yasova Tampa General Hospital SCI Support Group 2 Columbia Dr., Tampa, Florida, 33601 Phone: (800) 995-8544 GEORGIA Support Groups Columbus SCI Support Group Phone: (703) 322-9039 Contact: Ramona Cost E-mail: firstname.lastname@example.org Central Central GA Rehab Hospital 3351 Northside Dr., Macon, Georgia, 31210 Phone: (800) 491-3550 Ext. 643 Fax: (478) 477-6223 Contact: Kathy Combs ILLINOIS CHAPTER Spinal Cord Injury Association of Illinois 1032 South LaGrange Road, LaGrange, Illinois, 60525 Phone: (708) 352-6223 Fax: (708) 352-9065 Contact: Mercedes Rauen Website: www.sci-illinois.org E-mail: SCIInjury@aol.com INDIANA Support Group Calumet Region Support Group 2109 Cleveland St., Gary, Indiana, 46406 Phone: (219) 944-8037 Contact: Rita Renae Jackson Email: email@example.com Northwest Indiana SCI Support Group 1052 Joliet Rd, Valparaiso, Indiana, 46385 Phone: (219) 531-0055 Contact: Joe White E-mail: firstname.lastname@example.org IOWA CHAPTER Spinal Cord Injury Association of Iowa 3936 NW Urbandale Dr, Urbandale, Iowa 50322 Contact: Tim Ascherl Email: email@example.com Phone: (515) 270-1522 Contact: Angie Plager Phone: (515) 554-9759 Email: SCIAofIowa@hotmail.com Kansas CHAPTER Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: Linda.Klaiber@healthsouth.com KENTUCKY CHAPTER Derby City Area Chapter, NSCIA 305 W. Broadway, Louisville, Kentuky, 40202 Phone: (502) 589-6620 Contact: David Allgood, President Website: www.derbycityspinalcord.org E-mail: firstname.lastname@example.org
Support Group Friends with Spinal Cord Injuries 3785 hwy 95, Benton, Kentucky, 42025 Phone: (270) 205-5675 Contact: Anndrea Coffman E-mail: email@example.com MARYLAND Support Group Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, Maryland, 21207 Phone: (410) 448-6307 Contact: Jenny Johnson Website: www.kernan.org/kernan/ MASSACHUSETTS CHAPTER Greater Boston Chapter, NSCIA New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 01801 Phone: (781) 933-8666 Fax: (781) 933-0043 Contact: Kevin Gibson Website: www.sciboston.com E-mail: firstname.lastname@example.org SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, Massachusetts Phone: (617) 414-5000 Website: www.sciboston.com/support.htm Spaulding Support/Discussion Group 125 Nashua Street, Boston, Massachusetts Phone: (857) 222-5123 Contact: Betsy Pillsbury Website: sciboston.com/support.htm Whittier Westborough Support Group 150 Flanders Road, Westborough, Massachusetts Phone: (508) 871-2000 Ext. x2165 Contact: Deb Website: sciboston.com/support.htm Michigan CHAPTER MSCIA 1938 Woodshee Drive, Troy, Michigan 48083 Phone: (248) 288-2270 Contact: Stacey Murphy E-mail: email@example.com MISSISSIPPI Support Group Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, Mississippi, 39532 Phone: (601) 969-4009 Contact: Michelle Bahret Website: www.lifeofms.com Email: firstname.lastname@example.org MISSOURI Support Group Southwest Center for Independent Living 2864 S. Nettleson Ave., Springfield, Missouri, 65807 Phone: (417) 886-1188 Contact: Marion Trimble Website: www.swcil.org E-mail: email@example.com NEVADA CHAPTER Nevada Chapter, NSCIA 4708 E. Rochelle Avenue, Las Vegas, Nevada, 89121 Phone: (702) 988-1158 Fax: (702) 951-9637 Contact: Brian “Moose” Hasselman Website: www.nscia-nv.org E-mail: firstname.lastname@example.org NEW HAMPSHIRE CHAPTER New Hampshire Chapter, NSCIA 54 Wentworth Ave Londonberry, NH. 03053 Phone: (603) 216-3920 Fax: (603) 432-1549 Contact: Joan Nelson Website: www.nhspinal.org
NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Phone: (585) 275-6097 Contact: Karen Genett E-mail: email@example.com Phone: (585) 275-6347 Contact: Amy Scaramuzzino E-mail: firstname.lastname@example.org New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine Attn: James Cesario 1 Gustave L. Levy Place, Box 1240 New York, New York, 10029 Phone: (212) 659-9369 Fax: (212) 348-5901 Contact: James Cesario or John Moynihan Website: www.nycspinal.org E-mail: NYCspinal@NYCspinal.org Support GroupS SCI Network of Central New York ARISE, 635 James Street, Syracuse, New York, 13203 Phone: (315) 464-2337 Fax: (315) 464-2305 Contact: Tammy Bartoszek E-mail: email@example.com Phone: (315) 247-0927 Contact: Maria Froio E-mail: firstname.lastname@example.org Long Island Spinal Cord Injury Phone: (631) 221-9255 Contact: Ron Quartararo Website: www.testaverdefund.org E-mail: email@example.com
Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, Pennsylvania, 19102 Phone: (215) 587-3174 Fax: (215) 568-3736 Contact: Marie Protesto Website: www.mageepeers.org Rehabilitation Hospital of York 1850 Normandie Dr., York, Pennsylvania, 17404 Phone: (800) 752-9675 Ext. 720 Phone: (717) 767-6941 Contact: Tammy Derk E-mail: firstname.lastname@example.org SOUTH CAROLINA CHAPTER SCSCIA Phone: (866) 445-5509 Phone: (803) 252-2198 Contact: Rick Huntress Email: email@example.com TEXAS CHAPTER Rio Grande Chapter Highlands Regional Rehab. Hospital 1395 George Dieter, El Paso, Texas, 79936 Phone: (915) 532-3004 Contact: Sukie Armendariz Contact: Ron Prieto E-mail: firstname.lastname@example.org
NORTH CAROLINA CHAPTER NCSCIA 3701 Wake Forest Rd., Raleigh, North Carolina, 27609 Phone: (919) 350-4172 Contact: Deborah Myers E-mail: email@example.com Contact: Karen Vasquez E-mail: firstname.lastname@example.org
VIRGINIA CHAPTER Old Dominion Chapter P.O. Box 8326 (1st Class mail only), Virginia, Phone: (804) 726-4990 Fax: (888) 752-7857 Email: email@example.com Website: www.odcnscia.org Contact: Steve Fetrow Email: firstname.lastname@example.org
OHIO CHAPTERS Northwest Ohio Chapter, NSCIA 2654 Green Valley Dr, Toledo, Ohio, 43614 Phone: (419) 389-6678 Contact: Debbie Burke E-mail: TiggerLady99@aol.com Phone: (419) 455-0748 Contact: Jim Beckley Website: www.nwonscia.org E-mail: email@example.com
WASHINGTON Support Group SCI Forum University of Washington Medical Center Cafeteria Conference Room B/C 1959 NE Pacific St Seattle, Washington 98195 Phone: (206) 685-3999 Contact: Cynthia Salzman E-mail: Csalzman@u.washington.edu
Northeast Ohio Chapter, NSCIA 2500 MetroHealth Drive Cleveland, Ohio 44109-1998 Phone: (440) 813-2783 Fax: (440) 293-6503 Contact: Adam Sweeney E-mail: firstname.lastname@example.org Phone: 440.442.5550 Contact: Jeff Schiemann E-mail: email@example.com Website: www.metrohealth.org/NORSCIS
WEST VIRGINIA Support Group West Virginia Mountaineer Support Group P.O. Box 1004, Institute, West Virginia, 25112 Phone: (304) 766-4751(W) Fax: (304) 766-4849 Contact: Steve Hill E-mail: firstname.lastname@example.org
Support Group Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, Ohio, 44484 Phone: (330) 841-3856 Contact: Rebecca Lebron E-mail: email@example.com Phone: (330) 889-2158 Contact: Rick Ackerman E-mail: firstname.lastname@example.org PENNSYLVANIA Support GroupS Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, Pennsylvania, 16602 Phone: (800) 873-4220 Greater Pittsburgh Rehabilitation Hospital 2380 McGinley Rd., Monroeville, Pennsylvania, 15146 Phone: (800) 695-4774 Contact: Kristy Nauman E-mail: email@example.com Delaware Valley SCIA 2610 Belmont Ave., Philadelphia, Pennsylvania, 19131 Phone: (215) 477-4946 Contact: Bruce McElrath
WISCONSIN CHAPTER NSCIA Southeastern Wisconsin 1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215 Phone: (414) 384-4022 Fax: (414) 384-7820 Contact: NSCIA-SEW Office E-mail: firstname.lastname@example.org Contact: President E-mail: email@example.com Website: www.nsciasew.org
For a current listing of Chapters and Support Groups, visit www.spinalcord.org, or call 800.962.9629. If you cannot find a chapter or support group in your area, why not start your own? Contact the National Office for assistance on our Helpline: 800.962.9629.
I N T E R M I T T E N T C AT H E T E R
with m 3 technology
Trusted for over 30 years
April 1, 2008, Medicare changed coverage for intermittent catheter users. For more information visit www.coloplastmedicare.com
Did you know that you can now receive single-use Self-Cath® intermittent catheters? To receive single-use Self-Cath® intermittent catheters
Bring this page to your prescriber and do the following: Ask your healthcare provider for Self-Cath® brand intermittent catheters. Discuss increasing the number of catheters you are currently receiving. You and your provider can determine the number that is right for you. Get a new prescription from your healthcare provider and take it to your medical supplier. If you do not have a medical supplier or are having difficulty receiving Coloplast Self-Cath® intermittent catheters, please call our help line at 800-525-8161. Make sure your prescription says Self-Cath®.
For the Prescriber: A new prescription is required to increase utilization. The following must be documented: 1.
PERMANENT CONDITION: The patient must have a permanent impairment of urination or an undetermined time period of more than 90 days.
COMMON DIAGNOSIS CODES: 788.20 (Retention of Urine) or 788.30 (Urinary Incontinence, Unspecified).
FREQUENCY: Document the number of times a day/week/month the patient is cathing. This must match what’s listed on plan of care.
BRAND NAME, for example Self-Cath®, must be written on prescription for user to receive the determined choice of catheter; generic scripts may be filled by a medical supplier with cheapest product available resulting in no savings to the healthcare system or benefit to the catheter user.
For the Medical Supplier:
The choice of intermittent catheter was determined by the user and their healthcare professional. Please fill prescription as written. The following Medicare HCPCS codes apply to intermittent catheters A4351, A4352, or A4353.
For more information, please visit www.coloplastmedicare.com or www.us.coloplast.com, or call the Coloplast Help Line at 1-800-525-8161. Coloplast Corp. Minneapolis, MN 55411 1.800.533.0464 firstname.lastname@example.org www.us.coloplast.com
and Self-Cath ® are registered trademarks of Coloplast A/S.
© 2008-12. All rights reserved. Coloplast Corp., Minneapolis, MN USA.
12/22/08 1:29:14 PM