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www.spinalcord.org

Spring 2005

Vol. 2, No. 2

Leading the way in maximizing quality of life for people with spinal cord injuries and diseases since 1948.

NSCIA: The Bridge to Business

Summit Sponsors Seek the SCI Community

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rich and diverse group of forwardthinking companies and organizations who understand the benefits of partnerships with the SCI community are generous supporters of the SCI Summit 2005 and the SCI Hall of Fame to take place in Washington, D.C. this coming May 9-11. There is a growing realization across a variety of sectors that people with SCI and SCI stakeholders bring value to the table. The National Spinal Cord Injury Association is serious about wanting to do business with business for the mutual benefit of all. "These days corporations look less favorably upon groups coming to them for a handout. Now business is looking for a handshake," states Kevin Bradley, Director of Diversity Initiatives at McDonald's

Million Dollar Baby Gets It Wrong NSCIA and The Disability Community Speak Out

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he 2005 Academy Awards ceremonies honored the film Million Dollar Baby, directed by Clint Eastwood, with the

Oscar for Best Picture of 2005, in effect celebrating its central theme — that it is justifiable to end the life of a woman who

has become quadriplegic. NSCIA, along with other disability organizations including Not Dead Yet, has been speaking out vehemently in protest. On the whole, the mainstream media has neglected to address Million Dollar Baby's treatment of assisted suicide, choosing to protect the surprise plot twist in which Maggie, the lead character played by Hilary Swank, has her neck broken following an illegal "sucker punch" in her title fight. Also left unmentioned is director and star Clint Eastwood's contentious history with the disability community. He spent over $600,000 fighting accessibility measures at Mission Ranch, a resort he owns in Carmel, California, rather than invest the $7,000 the modifications would have cost. He testified to Congress in support of a bill that would weaken rights under the ADA. NSCIA wonders why, after a history like that, would a man make a movie like this, opening himself to accusations of a vendetta against the disability community? Marcie Roth, CEO of the National Spinal Cord Injury Association has been Continued on page 22

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NSCIA THANKS THE FOLLOWING SUMMIT SPONSORS

Platinum Sponsor

The Craig H. Neilsen Foundation The Medtronic Foundation

Gold Sponsor

The John F. Kennedy Center for the Performing Arts

Silver Sponsor

Bank of America

Bronze Sponsors

Acorda Therapeutics Christopher Reeve Paralysis Foundation Cingular Wireless McDonald's Corporation Microsoft Northwest Airlines Paralyzed Veterans of America United Spinal Association

Supporting Sponsors

America Online American Airlines Mitsubishi Electric America Foundation Pfizer Inc. Quickie / Sunrise Medical Shepherd Center The sanofi-aventis Group Therapeutic Alliances Inc.

Scholarship Sponsor

The Miami Project to Cure Paralysis

ADAPT Rolls In The Rain March in D.C. Directed at Governors By Michael Bailey, SCILife Contributor

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rom February 27-March 1, facing inclement weather, over 500 members of ADAPT (American Disabled for Attendant Programs Today) convened in Washington D.C. to demand that the National Governor's Association (NGA) pass an ADAPT-sponsored resolution calling for legislation to end institutional bias against people with disabilities in Medicaid law. Two legislative proposals currently pending in Congress seek to change federal longterm care policy, allowing flexible funding of support plans that would be created by the individual. Both would end the current institutional bias in Medicaid law. Senate bill S.301 — known as MiCASSA, the Medicaid Community Assistance Services and Supports Act — will make choice and community living the cor-

nerstone of Medicaid funding. It was recently re-introduced in the Senate by Senators Tom Harkin (D-IA) and Arlen Specter (R-PA). A companion bill in the House of Representatives, HR.910, is sponsored by Representatives Danny Davis (D-IL) and John Shimkus (D-IL). Another proposal called "Money Follows the Person" would also end institutional bias, allowing Medicaid-funded support money to go with the individual rather than go to licensed private or non-profit institutions. Sponsors in the Senate are Senator Harkin with Senator Gordon Smith (R-OR). Both proposals enjoy wide popular and bipartisan support. The nursing home lobby and the Bush Administration oppose both. As the National Governor's Association (NGA) met in the warm salons of the Marriott Hotel, the determined group of ADAPT activists braved snow, sleet, and icy

winds across the street to demonstrate for these reforms. Nearly all the demonstrators were wheelchair users, most draped in an array of flags, ponchos, banners, and mittens to keep out the cold. When the NGA met with the President at the White House there was little in the way of agreement. "What they are saying to states," said Wisconsin Governor Jim Doyle, "is, 'We're going to cut you and give you more flexibility' — and the flexibility is you can cut people off." Said New Mexico Governor Bill Continued on page 22


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Spring 2005


Spring 2005

from the editor

Because It’s Possible SCI Life STAFF

EXECUTIVE EDITOR: Gary Karp ASSOCIATE EDITOR: Janine Bertram Kemp DESIGN AND LAYOUT: Nikolai Alexeev ADVERTISING SALES: Joyce Parker DATA INPUT: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFF

CHIEF EXECUTIVE OFFICER: Marcie Roth CHIEF OPERATING OFFICER: Eric Larson COMMUNICATIONS DIRECTOR: Janine Bertram Kemp RESOURCE CENTER MANAGER: Charleene Frazier DEVELOPMENT CONSULTANT: Deanna Ackerman MEMBERSHIP SERVICES ASSOCIATE: Daniela Castagnino MEMBERSHIP SERVICES ASSOCIATE: Downey Hinrichs MEMBERSHIP COORDINATOR: Julie DeFea WEB SERVICES/PUBLISHING: J. Charles Haynes, JD WEBMASTER: Nikolai Alexeev

BOARD OF DIRECTORS

Executive Committee PRESIDENT: Harley Thomas VICE-PRESIDENT FOR CHAPTERS: Pat Maher VICE PRESIDENT FOR DEVELOPMENT: Tari Susan Hartman-Squire VICE PRESIDENT FOR MEMBERSHIP: Janeen Earwood TREASURER: Jeffrey D. Leonard SECRETARY: Janeen Earwood CEO/EXECUTIVE DIRECTOR: Marcie Roth Directors David Boninger, Ph.D. Jack Dahlberg Milita B. Dolan, MA Susan Douglas, MD John Fioriti Richard Hollicky Gary Karp Paul Mortensen Jim Root Christine Sang, MD Suzanne Wierbinski General Counsel Leonard Zandrow, Esquire

SCI Life PUBLISHERS

PUBLISHER: Charles W. Haynes PUBLISHER: J. Charles Haynes, JD SCILife is a publication of the

National Spinal Cord Injury Association 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. 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 901 East Willetta, Suite 2306, Phoenix, AZ 85006, e-mail: membership@spinalcord.org, fax: 602.239.6268, or phone us at 602.239.5929 or toll free at 877.778.6588. For questions not related to membership, write to: NSCIA National Office, 6701 Democracy Blvd., Ste. 300-9, Bethesda, MD 20817. Our voice phone is 301.214.4006 fax: 301.881.9817. Email us at info@spinalcord.org or go to 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, e-mail: chaynes@hdipub.com www.hdipub.com SCILife © 2005

By Gary Karp, Executive Editor, SCI Life

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hose of us who advocate for change in the world do so for a simple reason; we know in our hearts what is possible. We see across the gap between possibility and the current state of things. Our natural impulse is to close that gap. We believe that if we can convince others and line up the resources in the right way, the possible will become real. We are idealists who believe in change and can’t sit by knowing that people are being denied their full potential for a quality life. Spinal cord injury is a milieu infused with such un-manifested possibility. Our community is loaded with advocates who passionately want to bring those possibilities within the grasp of everyone with an SCI who is willing to make the effort to reach for them. We know that assistive technologies — from computers to the truly radical evolu-

tion of wheelchair design — extend the ability to communicate, work, and move in the world in unprecedented ways. We fight for funding to pay for these technologies, and encourage young professionals to explore the engineering and therapeutic roles that pull it all together because we know it’s possible. We strive to make rehabilitation efficient while making sure that people get access to services for as long as they need in order to reach their optimal ability. But the constraints of managed care have dangerously shortened length of stay. The pendulum has swung too far afield, making it much harder for people with recent injuries to achieve what’s possible. Our communities remain infused with physical and attitudinal obstacles, and the very right to live in those communities is impeded for some by public policies which direct funds only to virtual imprisonment in institutional settings, where very little real living is possible. Researchers continue the painstaking but steady forward process of solving the intricate puzzle of the spinal cord. The notion of cure — and the many ways that quality of life can be improved entirely apart from walking — evokes our sense of how far beyond our limits we’ve already leapt as a society. We can imagine reaching such grand visions to an extent that only ten or so years ago we could never have thought possible. And spinal cord injury need not equate with compromised health as we learn more about the impact of exercise

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and activity, how to manage the aging effects of life with SCI, and what is gained from optimal diet and being able to gain access to the local gym. Good health with SCI is ever more possible. Why else would we devote as much of ourselves as we do? We commit ourselves to lifelong careers, we start and lead organizations, we write books, we travel, we immerse ourselves in the minutiae of government and public policy, we take to the streets. Frankly, the denial of the possible has us pretty pissed off. And we come together to seek unity and collaboration, such as our community is about to do in Washington D.C. this May at SCI Summit 2005, where the passionate purruist of the possible is the very thing that unifies us. Each of us, at our core, shares this burning sense of lost possibility in the present, and truly attainable possibility for the future. It’s not just a dream. There are enough examples of the possible come true in the thousands of people with spinal cord injuries fortunate enough to have access to the resources and support they needed. They’ve proven many times over what life with SCI can really be, and what people can do when they get past the obstacles that all of us know to be artificial and externally imposed. We have the proof, we have the passion, we have the deep drive to make it all happen for anyone whose life has been changed by SCI. Because we know it’s possible.


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Spring 2005

from the executive director

Grasp the Opportunity By Marcie Roth, NSCIA Executive Director

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s you read this it is spring — the season of optimism. What an ideal time for a broad coalition of the SCI community to come together for the work and celebration of the SCI Summit and Hall of Fame. NSCIA cast a wide net and brought many people together to plan every aspect and detail of this event, a team that is deeply committed to bring our community together. We often speak of unity; our efforts in staging the SCI Summit demonstrates our commitment to walk the walk and roll the roll, leaving room for everyone’s agenda. Some have questioned whether we can truly build the bridges necessary to affect the change our constituents need. I say we have no choice. We must come together in the context of our separate agendas or not one of us will reach our real potential to make a difference. Every stakeholder invested in the issues affecting the lives of people with SCI/D will need to push past their comfort zone and commit to creating and then

bac profile

Medtronic

Lifelong Solutions for People with SCI/D By Tari Susan Hartman, NSCIA VP of Development

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inneapolis-based Medtronic is the world’s leading medical technology company providing lifelong solutions for people with chronic conditions, including SCI/D. Medtronic developed the revolutionary IBT™ Intrathecal Baclofen Therapy in a refillable pump delivery system for the control of spasticity which dispenses small, precisely measured dosages of medication. This system gives those with SCI/D increased ability to be active in their chairs for extended periods of time at work, school, leisure, worship, and social activities. Medtronic and The Medtronic Foundation have been there every step (and roll) of the way for NSCIA, helping with organizational solutions to enhance the life-

advancing a shared agenda for the future. I am writing this on Dr. Martin Luther King Jr.’s birthday. He was a guiding light to many — myself included — who wonder what our world would be like if he were still among us. He set the bar high for civil rights and societal inclusion. It is in this spirit that NSCIA has organized the Summit to build unity, and launched the SCI Hall of Fame to acknowledge our leaders and celebrate our successes. I am acutely aware of the start of our President’s second term and the opening of the 109th Congress. The turf battles and partisan alliances that consume many here in our capital are in fact irrelevant to our community and our constituencies. Every new Administration and Congress presents a new opportunity for us to improve the quality of life for people with SCI/D — which is NSCIA’s impassioned mission. We have a fresh opportunity to educate policy makers about our issues. Our economy is global and the Internet has transformed communication. International links, shared resources, and collaboration are the wave of the future. It now makes more economic and political sense than ever to change the system and maximize quality of life for people with SCI/D. But systems change requires not only a national effort but well-planned initiatives in all 50 states where trust funds, Medicaid, housing, transportation, and employment programs are all implemented. If we unify and sing from the same page, this could be the Congress that embraces our solutions for smart public policy. Being part of — and of service to — a community that is so marginalized suits me just fine as the eternal optimist I am. NSCIA has no desire to be part of the problem through inaction, but to fuel the

solution through our advocacy and support of the SCI community. Recently Dr. Margaret Giannini, Director of the Office on Disability, U.S. Department of Health and Human Services, invited me to join her in a series of meetings concerning tsunami survivors. The NSCIA Board embraces the role we have to play in the international disability community, participating in the international leadership discussions around such events as an upcoming international summit on Iraqi’s with disabilities to be held in Warsaw. In these meetings, my role has been to draw attention to the additional needs of those with new and existing disabilities. Whether it was the days after the devastation of New York City on 9/11, the continuing loss in Iraq, the devastation of the tsunami, or just the daily struggles of people with SCI/D and their second class citizenship across the U.S., the failure to give priority to the needs and lives of persons with disabilities is all too familiar — no matter who they are or where they live. As I write to you, NSCIA Board President Carmen Jones’ term is ending. I am so grateful for the leadership and guidance she has given us. Carmen’s axiom is “solutions” and she infused our organization with the optimism and practicality needed to take NSCIA to a new level. Under the leadership of our new Board President, Harley Thomas, I am all the more excited about our future. In honor of Dr. King’s birthday, I share a favorite and most appropriate quote: “If we will make the right choice, we will be able to transform the jangling discords of our world into a beautiful symphony of brotherhood.” I call on us all to come together and make that music.

long quality of life for people with SCI/D, and the association itself. Medtronic and The Medtronic Foundation have provided incredible ongoing support to NSCIA at critical phases of our capacity building, helping us to survive and thrive.

Activists” planted the seeds for Marcie Roth to crystallize her thoughts on what ultimately led to the May 9–11, 2005 SCI Summit. Now, there’s a gift that keeps on giving! Medtronic the company funded NSCIA’s resource document on navigating the insurance maze for people with SCI/D (www.spinalcord.org/html/insurance) and NSCIA provides judges for

Medtronic is Passionate

Their website states “Medtronic is passionate about improving the health of people and communities…” No words were ever so true! Marcie Roth, NSCIA’s CEO, says, “Medtronic products greatly improve the physical health of millions with SCI/D, and support from The Medtronic Foundation greatly improves the organizational health of NSCIA.” Since 1998, The Medtronic Foundation has helped NSCIA incubate our P.E.A.C.E. project for those with violently acquired spinal cord injuries, move us from the dark ages of snail mail to an efficient electronic communications system to vastly improve contact with our membership, and to bring our e-newsletter and website plan into fruition. They have also had an immeasurable impact through their Leadership Development Award, capacity-building policy briefings, and workshops on an array of topics including “Non-Profit Life Cycles,” “Serving Diverse Constituencies,” and “Developing Constituencies.” Their training on “How You Change Members Into

their annual contest to find artists with spasticity to fill printed calendar pages on the issue of “freedom from spasticity.” This year’s calendar listed our SCI Summit, and sold out quickly. Recent Medtronic surveys of Physical and Occupational Therapists provided respondents an option to donate their honorarium to NSCIA. When NSCIA envisioned a first time ever SCI Summit/Hall of Fame it’s no surprise that The Medtronic Foundation was again first to help us bring yet another dream into reality. Without their support as a Platinum Sponsor, there would be no SCI

NSCIA will hold its Annual General Membership Meeting on Thursday, May 12, 2005, at The Mayflower Hotel. The address is 1127 Connecticut Avenue, NW Washington, D.C.

The Annual Meeting, held in conjunction with SCI SummitTM 2005 and the May meeting of the Board of Directors, is open to all NSCIA members in good standing.

Summit 2005™, or SCI Hall of Fame™. Medtronic and The Medtronic Foundation are certainly among the greatest of NSCIA’s friends. With their unwavering support, NSCIA has accomplished more than our own resources would ever allow, but we are grateful far beyond their financial support. Their spirit of collaboration and commitment to our shared constituency, and their belief in our potential has vastly extended our ability to improve quality of life for millions with SCI/D. David Etzwiler, Senior Director, Medtronic Foundation and Government Affairs says, “The Patient Link program of The Medtronic Foundation partners with over 50 organizations worldwide that educate, support, and advocate on behalf of those with chronic health conditions and disabilities. NSCIA is a leader in this advocacy community. We are proud to be partnering with such an effective organization.”

Passion Knows No Bounds

On the corporate side, Medtronic was recently presented the Secretary Recognition award from Secretary Tommy G. Thompson at the U.S. Department of Health and Human Services. They were host to the U.S. Department of Labor’s Assistant Secretary W. Roy Grizzard, and also welcomed Ollie Cantos, Special Assistant in the Civil Rights Division from the U.S. DOJ for “Disability Continued on page 22


Spring 2005

from the president

Our Past, Our Future By Harley Thomas, NSCIA Acting Board President

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uring the past two years as President of the NSCIA Board of Directors, Carmen Jones has been an outstanding leader, and a wonderful personal friend. Due to family health problems Carmen was compelled — despite her strong desire to continue to contribute — to step down from her duties effective February 1, 2005. In keeping with the NSCIA Bylaws, the Chair of the Executive Committee steps up and fills the position of Board President until the next annual meeting of the board, which will take place in Washington, D.C. in May. I’m honored to accept the role, and extend my thoughts and prayers to Carmen and her family. From my new vantage point as President of the NSCIA Board of Directors, I’m looking forward to the upcoming SCI Summit and Hall of Fame events which will be held here in

Washington, D.C. from May 9th through the 11th. The SCI Hall of Fame will be held at the historic Kennedy Center for the Performing Arts on the evening of May 9th. Please check out our notice at www.spinalcord.org relating to both the Summit and the Hall of Fame. NSCIA has a rich history, having been originally established by the Paralyzed Veterans of America on July 10, 1948 as the National Paraplegia Foundation (NPF). In the 1960s, NPF played an active role with congressional testimony leading to the establishment of the model system of rehabilitation, where staffs would be fully trained in all aspects of spinal cord injury. Although there have been numerous changes in name, location, and focus during the past 57 years, one thing has remained constant: NSCIA’s highest possible commitment to advocacy and promotion of quality-of-life issues relating to individuals with SCI. Over the past several years, NSCIA has once again reinvented itself with a dynamic board of directors and a rapidly growing staff of highly-motivated professionals. NSCIA continues to focus intently on the future, providing answers and solutions to the daunting questions newly-injured individuals and family members face following SCI. Individuals with SCI often experience periods of deep depression and anger following injury. “Why, why did it have to be me? Is this a dream? When will there be a cure?” These and many such ques-

MEMBER VALUE PARTNERS

Bank of America Cingular Wireless New Mobility/Leonard Media Group

tions and attitudes abound, and so NSCIA’s mission will be in front of us for some time. I have no doubt that there will be a cure for SCI some day. When that might occur is another story, but until there is a cure that allows individuals with SCI to leave their wheelchairs behind and once again walk upright, there is a much greater concern. Quality of life. You might ask, “What can I do to maximize my potential and be all that I can be?” Quite simply, join with those of us who refuse to sit, wait, and be angry and sullen, and instead help everyone with spinal cord injury to live fully with their SCI. I know this to be possible through my own life experience, and this belief rests at the core of everything NSCIA does. I believe in a future that will allow all individuals, regardless of disability, full access and inclusion into the mainstream of society. Passage of the Americans with Disabilities Act was a first step, but there is still a very great deal left to do. Together we have a strong voice and, believe me, we can make a difference in public policy. So until medical science finds that magic bullet that will restore lost function, please support us in our commitment to quality of life, and join us here in Washington on May 9-11th to help formulate policy for everyone with SCI towards that end. As the late disability advocacy pioneer Justin Dart said, “Lead, follow, or get out of the way!”

SMALL BUSINESS PARTNERS EinSof Communications Three Rivers Holding LLC Wheelchair Getaways

STRATEGIC PARTNERS Acorda Therapeutics Astratech Darden Restaurants Medtronic Medtronic Foundation

Visit www.spinalcord.org for details

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employment Personal Assistance at Work The Issues, Your Rights By Susan Clair

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our journey back to work as a wheelchair user can be fraught with roadblocks such as employer discrimination, complicated accommodations, and simply keeping up the inertia needed to succeed. Knowing how to be an effective self-advocate, based on a well thought out roadmap and a clear agenda is the route to success. If you require Personal Assistance Services (PAS), you face one of the greater challenges of the employment path — but certainly not an insurmountable one. At Project HIRED, a community benefit, not-for-profit organization in Santa Clara, CA, we specialize in assisting people with disabilities to gain competitive employment. We have watched many people successfully navigate the road back to work — reaching their goals by knowing their rights and responsibilities under the law, negotiating for needed accommodations, and being confident in achieving their goals. Since every situation is unique, the best expert is always the person with the disability, who nonetheless needs to bring creative thinking to the task. Begin by identifying your complete set of the most effective accommodation requirements, both expensive and inexpensive. The list might include accessibility in the workplace, an ergonomic workstation, or accessible technology — as well as PAS. A valuable resource to help with this process is your local State Department of Rehabilitation (DOR), which provides vocational rehabilitation services, ADA technical assistance, and training. Your State DOR will also be closely aligned with the local Independent Living Center (ILC), which provides information and referral services. (Find a list of ILCs by state at www.virtualcil.net/cils.) According to the Americans with Disabilities Act (ADA) the employer is required to provide "reasonable accommodations," but the accommodation solution is the choice of the employer. It must only be effective, not necessarily what would be your first preference. Roadblocks can arise when communication is not clear. Starting off from an adversarial stance, asserting that "it is my right to have a personal assistant in the workplace" is more likely to lead to a collision of wills rather than the cooperative, mutual relationship you are seeking. Partner with the employer and try to understand their point of view. Both sides want the same solution — a happy and productive employee. You will want to educate the employContinued on page 21


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Spring 2005

sci hall of fame inductees ASSISTIVE TECHNOLOGY Dr. Rory Cooper

Dr. Rory Cooper is Distinguished Professor and Chair of the Department of Rehabilitation Science and Technology at the University of Pittsburgh, where he also serves as Director of the Human Engineering Research Laboratories and VA Rehabilitation Research & Development Center of Excellence in Pittsburgh, PA. Dr. Cooper has been selected for numerous awards, including the Paralyzed Veterans of America John Farkas Leadership Award (1997, 1999) and the DionJohnson Award for Spinal Cord Research (2000). Dr. Cooper has published widely and is the author of two books: "Rehabilitation Engineering Applied to Mobility and Manipulation,” and “Wheelchair Selection and Configuration.”

CORPORATE/GOVERNMENT EXECUTIVE Duane French

Duane Martin French was born to Robert and Peg French on December 19, 1953 in Hastings, Nebraska, one of six brothers and sisters. At age 14, Duane’s C3/4 SCI occurred from diving into the Platt River. After earning bachelor’s and master’s degrees in rehabilitation administration, he started his career as a Vocational Rehabilitation Counselor. He then transitioned to Independent Living, progressing from Counselor to Executive Director of Access Alaska, the state’s largest independent living center. In 1995, Governor Tony Knowles appointed Duane Director of the Alaska Division of Vocational Rehabilitation, where he served for almost eight years.

ENTERTAINMENT

Teddy Pendergrass Teddy Pendergrass was born on March 26, 1950 in Philadelphia, PA, and raised by his mother, Ida Pendergrass, a God-fearing South Carolina sharecropper’s daughter. It was Teddy’s mother who recognized his singing ability at only two years of age when he began singing in church. In the fall of 1976, Teddy embarked on his solo career. He scored big right from the start with “I Don’t Love You Anymore,” “You Can’t Hide from Yourself,” “Close The Door,” “Love TKO,” and “Turn Off The Lights.” On March 18, 1982 Teddy’s life was changed dramatically when he was paralyzed from the chest down in an auto accident. He spent the next six

LEGISLATIVE

The Honorable Tom Harkin Tom Harkin is a product of small town Iowa who has not forgotten his origins. He was born November 19, 1939 to a coal miner father and a Slovenian immigrant mother who passed away when Tom was ten years old. He earned his degree at Iowa State University in government and economics. Tom Harkin has been a consistent supporter of the rights of people with disabilities. Tom's brother, Frank, was deaf since childhood, so Tom knows firsthand the challenges facing Americans with disabilities. He was a principle author of the 1990 Americans with Disabilities Act, the landmark legislation that protects the civil rights of more than 54 million Americans with physical and mental disabilities. He's

Injured at T7-8 in 1980, Dr. Cooper began building wheelchairs as he pursued his advanced education in engineering, rising to the top ranks of the assistive technology effort, particularly related to wheelchair mechanics and ergonomics. Not satisfied with just doing research, he has always worked hard to ensure that advances in science get out to the people who need it most. He initiated the creation of the Center for Assistive Technology (CAT), a clinic in Pittsburgh that provides services directly to individuals with disabilities who need assistive devices for mobility, hearing, speech, and other essential everyday needs.

He now serves as Director of the Division of Employment and Assistance Programs for the Washington State Department of Social and Health Services, Economic Services Administration. Duane was a strenuous advocate for passage of the Air Carrier Access Act of 1996, Civil Rights Restoration Act, Americans with Disabilities Act, Civil Rights Act of 1990, and other critical pieces of federal, state, and local legislation. Duane strives to live a soulful life making love the central focus of everything he does. Duane believes government and its leaders must commit every day to achieving a greater good for all humanity.

months in the hospital and in rehab before returning home. Teddy returned to recording the year after his accident and recorded “Love Language.” The year 1985 also marked Teddy’s return to the stage with a stirring appearance at Live Aid. The following year Teddy’s autobiography entitled “Truly Blessed” was published. Now an outspoken advocate for people with disabilities, he recently founded the Teddy Pendergrass Alliance (TPA), a national organization that helps people with spinal cord injury rebuild their lives.

also led efforts to improve educational opportunities for children with disabilities. Senator Harkin played a major role with NSCIA in bringing Ma’rwa Ahteemi to the United States for medical care. Ma’rwa is a 13-yearold Iraqi child who sustained a spinal cord injury from an errant mortar attack. He is also a longtime leader in the fight to improve healthcare. As ranking Democrat on the Senate panel that funds most health programs, he has fought to preserve and protect Social Security and Medicare and co-sponsors the Medicaid Reform bill, MiCASSA.

BENEFACTOR

Christopher Reeve Since becoming paralyzed in 1995, renowned actor Christopher Reeve put a human face on spinal cord injury for the mass public. In 1999, Reeve became the Chairman of the Christopher Reeve Paralysis Foundation (CRPF), a nonprofit organization that supports research to develop effective treatments and a cure for paralysis. CRPF also makes quality of life grants. In 2002 the Christopher & Dana Reeve Paralysis Resource Center was founded in Short Hills, NJ to provide a comprehensive source of information for people living with paralysis. Reeve served as Vice Chairman of the National Organization on Disability and on several boards of directors: World T.E.A.M. Sports, which organizes

DISABILITY AWARENESS/ ACTIVISM Barry Corbet

Barry Corbet, perhaps best known as the editor of New Mobility magazine from 1991 to 2000, was also an outdoorsman, a filmmaker, and a widely published author who chronicled the disability experience. In 1963 Corbet, a member of the first American team to ascend Mount Everest’s west ridge, yielded his place on the summit to his fellow mountaineers, figuring he’d return some day. But he never made it to Everest’s summit, after a helicopter crashed near Aspen, Colorado in 1968 from which he was filming. The crash caused a T12/L1 spinal cord injury. Corbet shot three groundbreaking films about

ENTREPRENEUR

Marilyn Hamilton Marilyn Hamilton has been athletic and energetic since childhood, even after becoming paraplegic in a 1978 hang gliding accident. Dismayed by the prospect of living her life from a cumbersome 50pound wheelchair, Marilyn channeled her energies into designing a lightweight, adjustable chair with a modular frame, responsive performance, and a fun personality. The Quickie was born, and immediately revolutionized the wheelchair industry. Marilyn co-founded Motion Designs in 1979 and began manufacturing the Quickie. In 1986, the company was purchased by Sunrise Medical, where Marilyn serves as Vice President of Global Strategic Planning. Marilyn has touched millions of lives, and her story has appeared in books, magazines, and national

MEDIA

John Hockenberry From covering the plight of Kurdish refugees in Iraq to advocating for the full inclusion of all people with disabilities, John Hockenberry has led by example in print, radio, and television. He is the recipient of three Peabody Awards and four Emmy Awards, For over twenty years he has been a sought-after journalist and commentator on a broad spectrum of subjects, including technology, design, architecture, the media, international conflicts, and has to his credit a huge body of work on disability issues. He is, perhaps, best known for his critically acclaimed memoir, "Moving Violations — War Zones. "Moving Violations" was popular not only

Photo: Timothy Greenfield-Sanders

NSCIA is extremely proud to announce the first inductees of the SCI Hall of Fame. They will be honored in a gala event on May 9, 2005 at the Kennedy Center for the Performing Arts in Washington, D.C., as part of the SCI Summit 2005. sporting events for athletes with disabilities; TechHealth, assisting in the relationship between patients and their insurance companies; and LIFE (Leaders in Furthering Education) supporting education and opportunities for the underserved population. Since becoming paralyzed, Reeve starred in a remake of the classic Hitchcock thriller “Rear Window” for which he was nominated for a Golden Globe and won the Screen Actors Guild Award for Best Actor in a Television Movie or Miniseries. He also directed several films. Christopher Reeve died on October 10, 2004 at the age of 52 years. His wife, Dana Reeve, carries on in his stead as Chairman of CRPF. spinal cord injury: Changes, about coming to terms with SCI, Outside, about living an active life, and Survivors, about aging with a disability. In 1980 he wrote Options: Spinal Cord Injury and the Future, now in its 10th printing. That path led to what he sometimes referred to as a “second life,” one very different from his first, but equally fulfilling. Corbet said. “Real life doesn’t give a damn about the particulars of how you live it. It just keeps flowing and happening and creating and destroying — and you get the whole ball of wax, with or without a disability.”

news programs including “60 Minutes.” She was named California Business Woman of the Year and a member of the California Governor’s Hall of Fame for People with Disabilities. She also founded WOW (Winners on Wheels) — a scouting program for disabled children. An award-winning skier and tennis player, Marilyn has inspired a generation of wheelchair athletes. In fact, her story and tennis chair are now touring the country in the Smithsonian collection. Marilyn Hamilton has given the world more than just a revolutionary wheelchair. She has given inspiration, encouragement, and hope.

among people with disabilities, but with the general public as well. It was nominated for the National Book Award and Hockenberry performed a one-man show in NYC based on his book. In all of his professional endeavors, John has an incredible flair for making the extraordinary seem reasonable and the inane seem humorous. Having done this with a T-5 spinal cord injury would make some people think this was some sort of "inspirational guy," but that is not a role or title he wants. He is fiercely independent and driven and has shown that the most basic instinct is to adapt and thrive in your environment.


Spring 2005

sci hall of fame inductees RESEARCH

Wise Young, Ph.D., MD Dr. Wise Young is founding director of the W .M. Keck Center for Collaborative Neuroscience, Chair of the Department of Cell Biology and Neuroscience and a professor at Rutgers University in New Jersey. In 1984, he was appointed Director of Neurosurgery Research. In 1997, as part of Rutgers' commitment to the future, Dr. Young was recruited to establish and direct a worldclass center for collaborative neuroscience. He was a member of the team that discovered and established high-dose methylprednisolone (MP) as the first effective therapy for acute spinal cord injuries. This team also played a major role in Andy Blight's signal work on 4-aminopyridine (4-AP), which shows significant promise for increasing nerve

SPORTS

Randy Snow Randy Snow is an achiever, all the more since he has used a wheelchair as a T12 SCI paraplegic. At the age of sixteen he was working on a farm when a 1000pound bale of hay crushed him. Initially discouraged with his new life, Randy soon realized that change was less painful than staying the same. Eventually, he not only accepted his life, he embraced it, discovering new options and opportunities for achievement. And achieve he did. A serious athlete prior to his injury, Randy has since won ten U.S. Open tennis singles titles, and earned a silver medal in an exhibition race at the Los Angeles Summer Olympics. He is the only athlete in history to compete in three different

sci summit 2005 breakout topics

conductivity. Dr. Young developed the first standardized rat spinal cord injury model used worldwide for testing therapies, formed the first consortium funded by the National Institutes of Health (NIH) to test promising therapies, and helped establish several widely accepted clinical outcome measures in spinal cord injury research. Founder and once editor-in-chief of the Journal of Neurotrauma, Dr. Young serves or has served on advisory committees for the NIH, the National Academy of Sciences, and NICHD, and for various spinal cord injury organizations.

summer Paralympic Games and earn medals in three different sports. Because of his pioneering achievements, Randy received the Paralympic torch from President Clinton to launch the Atlanta Paralympic Games in 1996. And in 2004, he was the first Paralympian inducted into the U.S. Olympic Hall of Fame. Today, Randy is an award-winning author, a Fortune 500 speaker, and the president of NOXQs (No Excuse), Inc., through which he inspires people to respond to life changes by discovering new options and opportunities.

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.

It’s Free! JOIN OUR GROWING NATIONAL FORCE FOR CHANGE

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cut out & return

In Washington, D.C. from May 9–11, NSCIA will host the first Summit on SCI, gathering over 200 key players in the spinal cord injury community. With its theme, "Facing Issues, Creating Solutions," the Summit will address five main topics in concurrent breakout sessions. Here are brief articles on each — by no means all-inclusive — offered as an initial offering to "prime the pump" for the lively and productive interchange to take place in D.C. in May.

Community Living By Stephanie Thomas, National ADAPT Organizer

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etting people with SCI and other disabilities into their communities — and keeping them living there — involves two critical issues; attendant services (also know as personal assistance or PAS) and housing. Education, employment, transportation, relationships, and other community living factors that contribute to quality of life cannot be addressed until an individual has appropriate access to both of these critical — and achievable — resources. For those who need help with daily living tasks such as bathing, getting in and out of bed, toileting, etc., attendant services are the key to living independently. Yet when government pays for those services, in whole or in part, they are not made available to people without housing. The two are bureaucratically tied together Funding for these vital services must be our first priority, especially in view of recent and proposed federal and state spending reductions. Across the states you will hear of long waiting lists, especially for programs with greater consumer control and an enriched package of services. Medicaid, the largest funder of attendant services, is under heavy fire from a conservative Congress and administration seeking to reduce domestic spending. These services are vital and must be retained. Too many of us are in nursing homes or other institutions for lack of other options. 67% of funds go to nursing homes and other institutions while 33% go to community-based services. By focusing our advocacy efforts on a shift away from the institutional bias in long term care funding, we can promote better use of the money already being spent. In general, community-based services have been found to cost two-thirds the amount of the institutional equivalent services. The Money Follows the Person program currently proposed in the U.S. Senate is the purest means to address this problem. Under this approach, the money that pays for an institutionalized person’s services would be moved from the institutional budget to the community budget. States are able to do this right now, yet many ignore this option. In addition, a proposed federal bill would provide that, in certain states, the costs of a person moving into the

community would be paid fully with federal dollars. States rights is currently the driving force in government philosophy, making it necessary to fight for these issues at the state as well as federal level. More control is being pushed onto the states while they are simultaneously being denied federal resources. Advocates need to know what their state is doing, and what it could be doing. In the area of housing there are three main issues: affordability, accessibility, and integration. While not all people with SCI are poor, with a 75% unemployment rate, much higher medical costs, and much more limited options on how to cover these costs, many in the disability community fall into the lowest income levels. Unfortunately, the trend in housing is toward a higher level of income. The housing that was developed a generation ago with commitments to provide units for those with very low incomes is aging out of these commitments. Little is being done to replace these units. Rental assistance for tenants is in extreme demand while affordable, accessible housing stock has never begun to meet that demand. Accessibility is vital. Housing that people can’t get in and out of on their own is widespread, and cancels the benefits of any gains in public accessibility, transportation, or employment. Enforcement of existing laws like Section 504 of the 1973 Rehabilitation Act and the Fair Housing Act Amendments would help address this concern. Some government bureaucrats and even advocates look the other way while more barriers are constructed. Visitability, or very basic access to single family housing, is another idea that is spreading across the nation. With this basic level of access, a home can more easily be modified for an individual’s use. Often the few affordable housing developments being built use funds for disability-only housing, failing the imperative of integration and inclusion. It does not take much imagination to see this as just another ghetto not much different from the institutional model. We are under fire and likely to lose hardwon gains. We must focus on the basics and be savvy. However, with standards and programs back on the federal and state tables, if we play our cards right we can grab the opportunity to slip through the barriers and make real strides toward our goals of equality and community living.


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Health Promotion By Thilo Kroll, Ph.D.

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aving a spinal cord injury (SCI) entails a unique set of healthcare issues, yet people with SCI are as at risk as the general population for the full array of possible diseases and conditions, including cancer, cardiovascular disease, diabetes, or osteoporosis. There is even mounting evidence that people with SCI may be at a higher risk for developing bladder cancer or cardiovascular disease — preventable or treatable secondary conditions. There are widespread prevention and health education campaigns for the general population, and screening guidelines have been drawn up for the practitioner community, yet little attention has been given to health promotion for people with disabilities. The risk factors are well known, among them; being overweight, lack of exercise, smoking, and alcohol consumption. Data from the National Health Interview Survey (NHIS) show that people with activity limitations, including people with SCI, are more likely to report these factors than peo-

Rehabilitation By Gary Ulicny

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s goes healthcare in general, so goes medical rehabilitation. So it follows that the field of medical rehabilitation is facing an increasing number of people with no insurance or limited benefits, which has put huge demands on medical rehabilitation facilities. Due to the severity of their disabilities and the paucity of return-to-work resources, many people with spinal cord injuries eventually become Medicaid-eligible. In many states Medicaid does not provide specific benefits for rehabilitation, leaving a growing number of people without the services that would allow them to return to an independent lifestyle. Add to this the growing number of undocumented immigrants injured in this country, and it’s clear that the future of our ability to provide quality spinal cord rehabilitation to all who need it looks bleak. Managed care has imposed shorter lengths of stay. Providers have been forced to find new and unique ways to serve individuals, including the expansion of day programs and outpatient services. Still, many people are returning to their communities without fully realizing their rehab potential. These communities often have very little to offer in terms of support services or expertise in SCI issues. The result: a huge increase in secondary complications. A recent study by Jones & Evans, 1998, published in Topics in Spinal

ple without. If we look at only these three areas more closely, we find substantial gaps in the area of health education and promotion. Few well-documented and accessible programs exist that provide people with SCI the opportunity to tackle weight problems or exercise. Most gyms in the U.S. lack accessible equipment or knowledgeable staff to assist people with SCI with workouts. Moreover, researchers have been slow to understand the need for exercise guidelines that address the unique needs of people with para- or quadriplegia. Alcohol abuse is a widely underresearched area. Over time, excessive drinking has the same detrimental health effects on a person with SCI as we observe in the general population. Yet many people with spinal cord injury regularly drink alcohol. This may be easily dismissed as a misguided attempt to deal with chronic pain or loneliness, but it more accurately reflects a lack of awareness in the practitioner and research communities. Accessibility of routine preventive services such as mammograms, prostate exams, and bone mineral density scans is often limited. Even if the medical office is accessible, exam tables, scales, and mammography machines usually are not, nor would one find adequate support for safe and

appropriate transfers from wheelchairs. As long as these barriers are not addressed, people with SCI cannot benefit from health-preserving practices widely available to those without mobility impairments. People are more inclined to make changes in their lives if activities like weight loss and exercise programs are fun and gratifying. The role of humor in achieving these heath promotion objectives is largely underappreciated. Health education and promotion activities focused only on change in knowledge, beliefs, intentions, and behaviors are missing out on a key point. While the advice columns on sexuality fill nearly every magazine and sexuality is displayed ever more frankly on TV and the Internet, it remains a taboo topic where people with disabilities are concerned. Sexuality is often the first topic removed from patient education programs under the pressure of ever-shorter inpatient rehabilitation stays. Women are offered insufficient information about birth control or pregnancy specific to their SCI. After discharge from rehabilitation, many individuals are largely left alone to find answers to their questions. The life expectancy of people with SCI today is higher than ever before, approaching that of the general population. Living a long and healthy life does not only mean staving

Cord Injury Rehabilitation found a clear correlation between lengths of stay and the increase in pressure ulcers amongst model systems consumers. As long as our healthcare system is based on a managed reimbursement model, there is little incentive for insurers to provide ongoing support that prevents costly secondary complications. Some states have enacted legislation to create “trust funds” (institutionally rather than individually controlled), funded by a surcharge to speeding and DWI/DUI (driving while intoxicated or under the influence) tickets. These funds are intended to provide services not covered by private insurance, Medicare, or Medicaid. Yet in some states the money is administered by a state or contracted agency, many of the dollars are going to administration. Also, some states limit the services or goods that can be paid for, while in effect letting other agencies off the hook for services they should be providing. In other states, though, the legislation actually limits how much can be spent on administration and provides for a great deal of spending flexibility. The role of public health services and independent living centers can play in this will need continuing assessment. There are also clearly gaps in quality of care. Many insurers refuse to pay for patients to travel to regional centers of excellence. In addition, there is a huge discrepancy in outcomes amongst model systems programs. Many newly injured individuals are being forced to receive rehabilitation from organizations that lack expertise in the treatment of spinal cord injury. All is not gloom and doom. Research

in the areas of technology, cell implantation, and activity-based therapies is exploring potential advances that could improve the functional ability of persons with spinal cord injury. But while these are still in the research phase these advances should not be hailed as revolutionary when in fact they have yet to be adequately shown to be scientifically sound. It will be extremely important in the next decade to develop a best practice methodology that looks at evidence-based therapies for improving quality of life for people with SCI. On the horizon are new medical insurance programs being touted as consumerdirected. These products typically have high deductibles and high-level catastrophic coverage. While this may seem like an excellent way to deal with catastrophic injury, the jury is still out on whether those products will provide for adequate rehabilitation care. It is an exciting time in the field of medical rehabilitation as we begin to explore new technologies to improve the functional rehabilitation of people with spinal cord injury. It is critically important that resources be made available to allow this to happen. Society in general must take the long-term view that urges development of programs to provide services that will not only pay off for people with disabilities, but are also cost effective. Gary Ulicny is the President and CEO of the Shepherd Center in Atlanta, GA, and an advocate for the full inclusion into the community of people with disabilities.

off medical complications and secondary conditions, it means actively taking steps to live well with an SCI. This encompasses physical, emotional, and social health. People with SCI need access to activities according to their individual interests just as anyone else does. For them, health promotion demands an enabling environment specifically designed for their needs. Programs should be developed in close collaboration with people with SCI so that interventions are as feasible and acceptable as possible. Without the dismantling of both physical and attitudinal barriers, full social participation is not possible. Researchers need to provide the basis for screening and health behavior recommendations, so that scientifically demonstrated health promotion measures — many of which are easily implemented and affordable — can achieve their great potential to reduce preventable medical challenges and extend independence for people with SCI. Thilo Kroll Ph.D. is a senior research associate at the National Rehabilitation Hospital Center for Health & Disability Research in Washington, D.C. His research focuses on access to health care, health promotion, and community integration issues for people with SCI and physical disabilities.

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sci summit 2005 breakout topics

Research By Maria Amador

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esearch on multiple fronts is currently underway to address both “care” and “cure” of persons with SCI. Increasing numbers of laboratories located worldwide now pursue what 20 years ago was considered unthinkable — the repair of neural tracts and full restoration of body functions in those with paralysis. SCI regeneration research is on a systematic advance toward clinical trials for testing repair of spinal cord functions. New treatment approaches are needed to rescue neurons and prevent axonal damage, replace dysfunctional neurons and promote axon regeneration, and guide the regrowth and remyelination of axons. Rehabilitation strategies will also be needed to promote recovery of function. Only a comprehensive approach — drawing on expertise in the fields of cell biology, electrophysiology, pharmacology, molecular biology, transplantation, surgical interventions, regeneration, and rehabilitation — will comprise an effective recovery strategy. Several reparative approaches with potential for translation to clinical trials are emerging. These include: neuroprotective strate-

Technology By Jane Berliss-Vincent

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hile medical technology focuses on direct modification of the body, adaptive technology (also known as assistive technology or AT) is any product — high, low, or no tech — that helps with modification or negotiation of the environment for a person with a disability. Prosthetic hands, for example, are a medical technology, while spoons with easy-to-grip handles are AT. Although this distinction is not always precise, the implications can be significant. Funding from sources such as Medicare may be available for "medically necessary" technology, but not for AT. A consumer may be more interested in products that improve environmental shortcomings over modifications that extend their physical capabilities. AT that was initially developed to meet the needs of people with SCI or other disabilities sometimes find an audience with the broader public. Reachers with gripping ends are increasingly being marketed to nondisabled individuals, for example. There is now a large body of AT that can be acquired at mainstream retail stores — some WalMarts even have an AT section. Mainstream products can also serve AT purposes, either out of the box or with modifications. One example is Roomba, a small robot whose sole function is vacuuming floors. Roomba is available for under $200, or about the price of a traditional vacuum cleaner, and is being marketed to a variety of consumers — including, without fanfare, wheelchair users.

gies to curtail the cascading damage to the spinal cord that occurs following injury; auto-transplantation methods using adult human cells (Schwann cells, olfactory ensheathing glia, and oligodendrocytes); embryonic, fetal, and adult (stem) cells and tissues for transplantation; and molecular and pharmacological approaches to counteract the inhibitory spinal cord environment and to guide axon growth and synapse formation. The challenge will be to translate these emerging treatment strategies into practical use through welldesigned and systematic clinical trials. New rehabilitation-based techniques are being designed and tested to follow up on preserved or repaired spinal circuitry, and to improve muscle strength and function. While these are not curative, therapies such as body weight support gait training, electrical stimulation assisted-walking, and exercise programs have been shown to improve muscle strength, cardiovascular health, and in some cases their ability to move. Recent research suggests that intense activity-based therapies may help re-establish partial movement in some people with SCI. Meanwhile, other important research addresses quality of life issues such as pain, spasticity, aging, sexual function, fertility, and bowel and bladder function. From the broad scope of ongoing research, promising new treatments may

emerge but their implementation can often be a challenge. Treatments are costly, and clinicians with specialty training are in limited supply. Examples of therapies that have been developed and researched but that have not experienced widespread use are FES (functional electrical stimulation), lower extremity cycle ergometry, FES assisted walking, hand neuroprotheses, and bladder stimulation devices. Whether insurance agencies will approve reimbursement for such care to a narrow segment of persons with SCI and whether biotechnology companies can survive economically with such small constituencies of users remains to be seen. In the attempt to bring therapies to clinical trial, researchers consider what treatment strategies should be taken to clinical trial, how the protocols should be designed, when clinical trials should commence, and who would be included in the first trials for chronic injury. Researchers also must consider the potential risks in deciding who is to be included in a specific protocol. Who has the most to gain from a treatment or the least to lose? To their credit, scientists have now opened pathways of communication to formally address these issues. In February of 2004 The International Campaign for Cures of spinal cord injury Paralysis (ICCP) supported and funded the first international clinical trials workshop on SCI in Vancouver, British Columbia where a work-

This trend should help counter the stigma of AT as a body of specialized products designed only for people with disabilities, ideally resulting in greater product availability and reduced prices for consumers. It is less clear that product quality will automatically improve. In 1993, when voice recognition technology for computer input was still primitive, one researcher wrote that users with disabilities "have been shown to tolerate poor recognizer performance as it may provide their only means of completing a task independently." User satisfaction standards for AT should be no different than for other products. Commitment to performance quality will naturally result in better AT — and increase the likelihood that, where appropriate, products will be adopted by mainstream users. Consumers with SCI must insist that AT products meet their standards of satisfaction. The stereotype of AT is that it tends to be complex, expensive, and highly specialized. For example, media reports on AT for people with SCI often highlight eyegaze systems, which allow a user to move a cursor on a computer screen via their eye movement. In truth, this technology is relevant to only a small minority of people with SCI who have substantial upper extremity impairment. Without question, specialized or highend AT products should be readily available for individuals whose capabilities are best served by them. However, there is also an ongoing need to find and disseminate information about creative functions for existing lower-end technologies. Of course, AT quality is irrelevant if the products are unable to reach consumers. A variety of potential bottlenecks are in the way: • Product developers who estimate a small

market share are naturally reluctant to create products or follow through on prototypes. End users can help by demonstrating the benefits of AT features to mainstream users to help generate more demand. • Federal funding for the Assistive Technology Act that was reauthorized in 2004 has been eliminated in the 2006 budget. This Act funds centers that provide objective information about AT. At the same time, information distributed by the government's "Buy Accessible" database contains highly subjective statements written by product and service vendors. This "information gap" needs to be filled in. • While there are a variety of initiatives aimed at making AT available to children, this is far less true for adults and seniors. Advocates need to direct their energies to promoting and expanding the reach of the federal Alternative Funding Program, Departments of Rehabilitation, and insurance providers. The successful development and distribution of AT is a win-win-win situation. A range of vendors who are committed to developing quality AT are seeing sufficient sales volume to thrive. Funding sources are able to demonstrate that they are providing the right resources to the right individuals. Most importantly, AT users are significantly aided in their ability to work, study, play, and live independently. Jane Berliss-Vincent is the Director of Adult/Senior Services at the Center for Accessible Technology in Berkeley, CA. www.cforat.org.

ing panel was established to develop guidelines for SCI clinical trials. Since the early 1980s there has been growing interest by seasoned and young investigators alike to uncover the mysteries of healing in the spinal cord. The National Institute of Neurological Disorders and Stroke (NINDS), The Miami Project to Cure Paralysis, the Christopher Reeve Paralysis Foundation (CRPF), and others have invested in the training of young scientists and now thousands of researchers worldwide have dedicated their careers to SCI research. While spinal cord repair remains an extraordinary challenge, a worldwide community believes that successful treatment strategies can be found. While the ultimate goal of finding a cure has yet to be met, these high caliber efforts deserve accolades and continued attention and support from scientists, governmental entities, consumer-based organizations, and individuals directly impacted by SCI. Maria Amador, BSN, CRRN is the Director of Education for The Miami Project to Cure Paralysis at the University of Miami Miller School of Medicine. Her office provides information about the Miami Project’s mission and research programs to individuals with SCI, their families, healthcare professionals, and scientific visitors.

THE NSCIA RESOURCE CENTER We provide customized, personalized telephone support for any question you have regarding spinal cord injury. Our staff — which includes an SCI registered nurse — draws from a wide range of information resources, and is able to serve Spanish-speaking callers. We will gladly provide written materials to those without Internet access.

We can help you with:

Seeking local resources NSCIA chapter and support group locations Non-NSCIA sources of support Locating rehabilitation facilities Funding information and insurance guidelines Relevant web sites Families with new injuries are given top priority.

Toll free 800.962.9629 Weekdays 8:30 a.m. to 5:00 p.m. Eastern Time info@spinalcord.org Hablamos español


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Spring 2005

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SpectraSTIM® Four channels of powerful, portable electrical stimulation to retain muscle mass and improve overall health. A great complement to the ERGYS.

Parastep® by Sigmedics Neuromuscular electrical stimulation (NMES) providing the potential for the spinal cord injured patient to stand and ambulate.

ERGYS® State-of-the-art functional electrical stimulation (FES) ergometry to give those with SCI the healthful benefits of using their leg muscles again. ERGYS®, REGYS, SpectraSTIM®, NeuroEDUCATOR®, and “The Power of Your Muscles” are trademarks of Therapeutic Alliances Inc. Parastep® is a trademark of Sigmedics Inc. ©2003 Therapeutic Alliances Inc.

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Tub/Slider System • The multichair 6000 is a tub/slider system which eliminates bathroom transfers and is an effective alternative when installing a roll-in shower isn’t possible. With it’s welded construction it’s stonger and lighter then the original multichair 5000, yet easily fits in the included carrying case. • Push handle adjustable cloth back, fold-back padded locking arms, adjustable swing-away footrests, total-lock brakes on 5" casters. • Lightweight and Portable for travel use.

JOIN US For the NSCIA Summit on Spinal Cord Injury May 9–11, 2005 Mayflower Hotel, Washington, D.C. and inaugural SCI Hall of Fame awards ceremony at the John F. Kennedy Center for the Performing Arts Visit www.spinalcord.org for more details.


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The ERGYS 2 for home and clinical use is a prescribed device for C- and T-level SCI and other neurological conditions. ©2004 Therapeutic Alliances Inc. ERGYS® and “The Power of Your Muscles” are trademarks of Therapeutic Alliances Inc.


Spring 2005

the arts

Lisa Thorson Lives Her Art By Janine Bertram Kemp, Associate Editor, SCI Life

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isa Thorson embodies a creative blend of jazz singer, activist, and professor. She was in her senior year of professional training at Boston Conservatory in 1979 when, while doing acrobatics, she flipped the wrong way and injured her spinal cord at the C5-6 level. She spent the next seven months at a rehabilitation hospital. “Because of progress the independent living movement has made, health care systems have improved a great deal since 1979,” Thorson says. “Now someone with SCI would never have to spend seven months in a hospital.” No moss grew under Thorson. While in rehab and after release, she continued her studies. She graduated from Boston Conservatory with a Bachelor of Fine Arts in May of 1980. Wanting a deeper theoretical understanding of music, she took a masters degree in Jazz Vocal Performance from the New England Conservatory of

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Music. Her career began in theater and evolved into jazz performance. “Initially in my career, people were surprised that I was a wheelchair user. The press wanted to 'talk' about the injury, disability, and access, ad nauseum,” states Thorson. “I stopped answering the questions. They’re irrelevant. I think my situation is unusual but I don't worry about it. My job is to produce great music, entertain, and share with my audience,” she concludes, “not to make them feel comfortable with the fact that I'm a chair user.” Thorson’s voice is pure, rich, and sassy. She has that true timbre that results from classical training yet infuses her art with all the emotions evoked by her skilled interpretation of a piece. Lisa has since produced five recordings as a leader. In 2004, she composed and produced “Jazz Art Signs,” an ambitious performance where arts and disability meet. It is a total access experience that features Thorson’s vocalizations backed by her quartet, and integrated with sign language interpretation and “screened visual descriptors.” It also features Boston painter Nancy Ostrovsky, who creates a work on canvas concurrent with the music. “Jazz Art Signs is cutting edge in its multi-sensory approach,” states Jane Forde, Artistic Director of The Music Hall in Portsmouth, N.H. “It is an amazing experience for the audience.” Lisa has that relatively rare understand-

ing that people with SCI and those with other disabilities share common interests. While some advocate only for programs and services for those with their given disability, Thorson pursues her advocacy along an inclusive, cross-disability model. In addition to her careers as a musician and professor, she has consistently advocated for access for artists with all disabilities. Thorson knows that success in artistic fields involves more than training and talent. In lectures she stresses the need for artists to be highly disciplined with an organized marketing plan. “Turning obstacles into assets is a way of life for people with disabilities, and that’s what you need to succeed as an artist,” Thorson asserts. “People with disabilities are used to forging a new path every day; when the ramp is blocked, there is no interpreter, no raised signage, no benefits, no housing, no transportation,” Lisa says, “or just an ignorant attitude that says ‘stay away’. If you are a young artist with a disability, look at your assets,” she advises. “You already have the strength to fight back, to advocate, and to find a different path, because as people with disabilities we improvise every day. That is creativity and tenacity rolled into one.” Lisa has achieved success in the arts primarily for arts sake. “Our mission is to share musicmaking that has heart, soul, spirit, humor, and originality,” she says. “We want our listeners to be active participants in the live music experience; to breath, sigh, laugh,

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Lisa Thorson and tap their feet as we make conversation through adventurous music." Those lucky enough to catch a performance by Thorson and her group can say with enthusiasm, “Mission accomplished.” Lisa Thorson performs May 9th at the John F. Kennedy Center of the Performing Arts prior to the SCI Hall of Fame. To book Lisa Thorson or order her music, visit www.lisathorson.com

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Spring 2005

You never know what hand life might deal you. That’s why Kessler is here. At Kessler Institute for Rehabilitation, we have helped

consistently ranked one of U.S.News & World Report’s top

individuals with spinal cord injuries meet complex physical,

rehabilitation hospitals.

emotional and social challenges for more than 55 years. By combining focused medical care with advanced technologies and a powerful team approach, Kessler has earned an international reputation for treatment and research. We’re a designated model system for spinal cord injury — one of only 16 in the nation — and are

Experience, innovation, compassion. That’s the Kessler difference, and it can make all the difference in your life. For a free CD on Spinal Cord Injury Rehabilitation or to learn more about our specialized programs, contact Sandra DeLeon at (973) 243-6927 or sdeleon@kessler-rehab.com.

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Spring 2005

legal

Tort Reform and SCI By Len Zandrow, NSCIA General Counsel

A

battle for justice is being waged in this country which could potentially have monumental impact on the SCI community. Not since the enactment of the Americans with Disabilities Act in July, 1990 have the stakes been higher. President George W. Bush has made socalled “tort reform” a priority. He is joined by insurers, corporations, and healthcare professionals who want to reduce consumer rights and cap jury awards for non-economic damages — or “pain and suffering.” This spring, the U. S. Congress and over one dozen states are weighing various proposals to limit jury verdicts, curtail class action lawsuits, and partially immunize the asbestos and pharmaceutical industries. Such tort reforms would disproportionately harm the approximately 11,000 Americans who acquire a spinal cord injury each year, preventing them from receiving full compensation for their injuries. Those who cause life-altering injuries would be less accountable in court for their mistakes, such as those responsible for auto accidents, the leading cause of SCI. The evidence casts doubt on the necessity for such dramatic changes. There is no real tort litigation “explosion.” Data from the National Center for State Courts has shown that tort filings in the U. S. actually declined by nearly ten percent from 1993 to 2002. Disputes between businesses actually comprise the single largest category of lawsuits filed in the Federal courts — businesses sue four times more often than individuals. This is where the true problem lies. Neither is there evidence of inflated or excessive jury awards. According to the Bureau of Justice Statistics, verdicts dropped more than 56% between 1992 and 2001. The median amount of compensation in all

tort cases, adjusted for inflation, is only $28,000. Increases in medical malpractice premiums are not caused by tort verdicts. Malpractice suits have increased largely because the number of U. S. doctors has doubled (from 366,425 to 750,000) between 1975 and 2001. Premiums have also increased because of unsound investment practices by insurers. Approximately 80% of all medical malpractice premiums have been invested in the bond market. A General Accounting Office report in October, 2003 concluded that these investments suffered a huge hit from 1998 to 2001 when interest rates on bonds fell, leading to proportional increases in premiums. Laws capping damages do not reduce doctors’ insurance premiums. The Center for Justice and Democracy found no correlation between tort reform and insurance rates when they compared states that have enacted tort restrictions and those that have not. After limits on insurance company payouts were enacted in Ohio, Florida, Texas, Oklahoma, and Nevada in the past two years, rates went up, not down. On average, malpractice premiums were no higher in the 27 states that have no limitations on malpractice damages, than in the 23 states that do have such limits. The healthcare and insurance industries are generally vibrant and profitable. Weis Ratings indicates that HMOs earned $10.2 billion in 2003, an 86 percent increase from 2002, nearly doubling their net profits. The property/casualty insurance industry was expected to earn profits of $36 billion in 2004, an all-time record. Malpractice costs account for less than two percent of healthcare spending — private or governmental. Negligent healthcare professionals are more responsible for high jury awards than lawyers. In Massachusetts, one-fourth of one percent of all the doctors (98 of the 37,369 doctors) accounted for more than 13 percent of all the malpractice payments, $134 million of the $1 billion in total payments. While medical malpractice is pervasive and the third leading cause of death in the U. S., a Harvard Medical Practice Study indicates that only 2% of patients injured

callahan

Continued on page 19

17

Special Needs Trusts Managing Money for Disability By Barbara Jackins

M

any persons affected by SCI are the beneficiaries of special needs trusts. These trusts are managed by trustees who carry a number of important responsibilities. Here are some key dos and don’ts for trustees. Do keep accurate and detailed financial records of the trust activities. A trustee can be exposed to risk because of inadequate records. Bank statements, cancelled checks, check registers, brokerage statements, invoices, and receipts should all be organized chronologically and kept with the trust records. Some trustees keep notes on why they felt a large disbursement (such as a vacation for the beneficiary and staff or friends) was a good idea. In short, there should be a paper trail for every dollar that comes in and goes out of the trust account. Don’t disclose private information about the trust unless there is a legitimate reason to do so. Case managers, social workers, and the merely curious may want to know how much money there is in the trust. In most cases, it’s none of their business, and you owe it to the beneficiary to protect his or her privacy. Of course, you must disclose information about the trust to any interested government agency such as the Social Security

Administration, the state Medicaid agency, or the local housing authority. Do invest the trust assets so that they earn a reasonable rate of return. Don’t let them sit in a non-interest bearing account. Many states have adopted the Uniform Prudent Investor Act that governs investments by trustees. This law requires the trustee to diversify the assets in a mix of cash, stocks, bonds, and mutual funds, unless there is a valid reason not to do so. For example, some trusts direct the trustee to make only “safe” investments like CDs, bonds, and money market funds. A knowledgeable investment advisor can explain the trustee’s duties in this critical area. Do become familiar with any and all public benefit programs that assist the beneficiary, such as SSI, SSDI, Medicaid, and Section 8 housing. Understand how any distributions from the trust can affect program benefits. For example, in most states, any distributions for food or shelter can cause SSI to be reduced up to $213 per month (in 2005). Don’t borrow money from the trust. In fact, the trustee should avoid having any personal financial dealings with the trust. These transactions, which are called selfdealing, are widely considered to be a breach of the trustee’s fiduciary duty. Some Continued on page 19

REAL PEOPLE REAL CHALLENGES REAL SOLUTIONS NY Metro April 15-17, 2005 Edison, NJ

Chicago Metro September 16-18, 2005 Rosemont, IL

Southern California June 3-5, 2005 Anaheim, CA

Texas Sept. 30-Oct. 2, 2005 Houston TX

Metro Detroit August 26-28, 2005 Novi, MI

Northern California November 18-20, 2005 Santa Clara, CA

www.abilitiesexpo.com • unlimited free passes • venue information • workshop schedule • special events • exhibitor list Abilities Expo is sponsored by the National Spinal Cord Injury Association. Stop by and visit the booth at any of the Abilities Expos.

Abilities Expo showcases the latest products and services to enhance the lives of people with disabilities. Visit the free exhibit hall packed with vendors featuring equipment demonstrations, attend free professional and consumer workshops, participate in special events, and visit with local organizations, all under the same roof!

ADMIT ONE Bring coupon to any 2005 Abilities Expo and save the $5 on-site entrance fee. Coupon must be filled out to be valid and may be photocopied for additional registrants. For information call: (800) 385-3085. NAME: ________________________________________________________________________ ADDRESS:______________________________________________________________________ CITY: __________________________________________________________________________ STATE: ________________________________ ZIP: ____________________________________ EMAIL: ________________________________________________________________________

Advanstar Communications provides certain customer contact data (such as customer's names, addresses, phone numbers and e-mail addresses) to third parties who wish to promote relevant products, services and other opportunities which may be of interest to you. If you do not want Advanstar Communications to make your contact information available to third parties for marketing purposes, simply call 800-331Produced and 5706 between the hours of 6 am and 7 pm (CST) and follow the instructions to remove your Managed by: name from Advanstar's lists.

SCI All events are wheelchair accessible. © 2005 Advanstar Communications Inc. All rights reserved.


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Spring 2005

NSCIA CHAPTER NETWORK ARIZONA Arizona United Spinal Cord Injury Association 901 E. Willetta, Ste. 2306, Phoenix, AZ 85006 Telephone: 602. 239.5929 Telephone:877.778.6588 Fax: 602.239.6268 Website: www.azspinal.org Email: info@azspinal.org Contact: Paul Mortenson CALIFORNIA Los Angeles Chapter, NSCIA 311 N. Robertson Blvd., Suite 823 Beverly Hills, CA 90211 Telephone: 310.553.4833 Fax: 310.230.0999 Email: peers@westworld.com Contact: Paul Berns, M.D.

DISTRICT OF COLUMBIA SCI Network of Metropolitan Washington, NSCIA Plaza West 9, 51 Monroe St. Rockville, MD 20850 Telephone: 301.424.8335 Fax: 301.424.8858 Website: www.spinalcordinjury.net Email: stevetowle@cs.com Contact: Steven Towle or Don Woodruff FLORIDA FSCIA, Spinal Cord Support Group of Collier County, Inc. 313 Spider Lily Lane Naples, FL 34119 Telephone: 239.825.9999 Email: spinal@naples.net Contact: Mindy Adaspe

CALIFORNIA WYNGS, NSCIA 7900 Nelson Rd., Panorama City, CA 91402 Telephone: 818.267.3031 Fax: 818.267.3095 Website: www.wyngs.org Email: wyngs4sci@msn.com Contact: Michele Altamirano

ILLINOIS Spinal Cord Injury Association of Illinois 1032 South LaGrange Rd., LaGrange, IL 60525 Telephone: 708.352.6223 Fax: 708.352.9065 Website: www.sci-illinois.org Email: SCIInjury@aol.com Contact: Mercedes Rauen

CONNECTICUT Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, CT 06492 Telephone: 203.284.1045 Website: www.sciact.org Email: nscia@sciact.org Contact: Bill Mancini

INDIANA Calumet Region Chapter, NSCIA 2109 Cleveland St., Gary, IN 46404 Telephone: 219.944.8037 Email: rjackson@ci.gary.in.us Contact: Lucille Hightower

KENTUCKY Derby City Area Chapter, NSCIA 1518 Herr Ln., Louisville, KY 40222 Telephone: 502.589.6620 E-mail: dallgood@calky.org Contact: David Allgood

Fax: 212.348.5902 Email: NYCspinal@NYCspinal.org Website: NYCspinal.org Contact: James Cesario Telephone: 914.969-7257 (H) Telephone: 914.325-3059 (C) Contact: John Moynihan

MASSACHUSETTS Greater Boston Chapter, NSCIA HEALTHSOUTH, New England Rehabilitation Hospital Two Rehabilitation Way, Woburn, MA 01801 Telephone: 781.933.8666 Fax: 781.933.0043 Website: www.sciboston.com E-mail: sciboston@aol.com Contact: Kevin Gibson

NEW YORK Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY 14602 Telephone: 585.275.6097 Contact: Karen Genett Email: rochesternscia@yahoo.com Telephone: 585.275.6347 Contact: Kathy Flannagan Email: ascaramu@frontiernet.net Contact: Amy Scaramuzzino

NEW HAMPSHIRE New Hampshire Chapter, NSCIA P.O. Box #197, No. Salem, NH 03073 Telephone: 603.479.0560 Fax: 928.438.9607 Website: www.nhspinal.org E-mail: lthompson@nhspinal.org Contact: Lisa Thompson

NEW YORK New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine Attn: James Cesario 1 Gustave L. Levy Place, Box 1240 New York, NY 10029-6574 Telephone: 212.659.9369

SOUTH CAROLINA NSCIA South Carolina Chapter 2009 Hampton St., Suite A Columbia, SC 29204 Telephone: 866.445.5509 Toll free: 803.252.2198 Fax: 803.376.4156 Website: www.scscia.org

TEXAS Rio Grand Chapter, NSCIA c/o Rio Vista Rehabilitation Hospital 1740 Curie St., El Paso, TX 79902 Telephone: 915.532.3004 E-mail: riograndenscia@aol.com Contact: Sukie Armendariz, Ron Prieto

VIRGINIA Old Dominion Chapter, NSCIA P.O. Box 8326 (1st Class mail only) Richmond, VA 23226 Telephone: 804.726.4990 E-mail: whlbound@comcast.net Contact: Shawn Floyd

NORTH CAROLINA NCSCIA 3701 Wake Forest Rd., Raleigh, NC 27609 Telephone: 919.350.4172 E-mail: dmyers8@triad.rr.com Contact: Deborah Myers E-mail: kvasquez@wakemed.org Contact: Karen Vasquez OHIO Northwest Ohio Chapter, NSCIA 10271 Roachton Rd., Perrysburg, OH 43551 Telephone: 419.872.5347 Website: www.spinalrap.org E-mail: nwonscia@hotmail.com Contact: Debra Ostrander

WISCONSIN NSCIA Greater Milwaukee Area Chapter 1545 S. Layton Blvd., Rm. 320 Milwaukee, WI 53215 Telephone: 414.384.4022 Fax: 414.384.7820 Website: www.nsciagmac.org E-mail: nsciagmacwi@aol.com Contact: John Dziewa

NSCIA SUPPORT GROUP NETWORK CALIFORNIA Leon S. Peter’s Rehabilitation Center Community Medical Center Fresno P.O. Box 1232, Fresno, CA 93715 Telephone: 559.459.6000 ext. 5783 E-mail: rgreenberg@cmc.org Contact:Ray Greenberg CALIFORNIA St. Joseph’s General Hospital Samuel Burre Conference Room 2200 Harrison Ave. Eureka, CA 95501 Telephone: 707.445.8404 E-mail: richbsherry@yahoo.com Contact: Richard Sherry FLORIDA Florida Rehabilitation and Sports Medicine 5165 Adanson St., Orlando, FL 32804 Telephone: 407.823.2967 Contact: Robin Kohn Telephone: 407.623.1070 Contact: Carl Miller

FLORIDA Tampa Bay Area Support Group Healthsouth 90 Clearwater Largo Rd., Largo, FL 33770 Telephone: 800.995.8544 Telephone: 813.844.4286 Fax: 813.844.4322 Website: www.flspinalcord.us E-mail: info@flspinalcord.us Telephone: 727.821.9131 Contact: Barry Marshall GEORGIA Columbus SCI Support Group Telephone: 706.322.9039 E-mail: rvcost@mchsi.com Contact: Ramona Cost GEORGIA HEALTHSOUTH Central GA Rehab Hospital 3351 Northside Dr., Macon, GA 31210 Telephone: 800.491.3550, ext. 643 Telephone: 478.471.3500, ext. 643 Fax: 478.477.6223 Contact: Kathy Combs

FLORIDA HEALTHSOUTH Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, FL 32901 Telephone: 321.984.4600 Email: Ellen.Lyons-Olski@healthsouth.com Contact: Ellen Lyons-Olski

MARYLAND Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, MD 21207 Telephone: 410.448.6307 Website: clubs.yahoo.com/clubs/kernanscisupportgroup E-mail: lmwilson123@yahoo.com Contact: Lisa Wilson

FLORIDA HEALTHSOUTH Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, FL 32308-5315 Telephone: 850.656.4800 Contact: JoAnna Rodgers-Green

MISSISSIPPI Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, MS 39532 Telephone: 800.721.7255 Website: www.lifeofms.com Email: LIFEofCentralMS@aol.com Contact: Michelle Bahret

MISSOURI Southwest Center for Independent Living Telephone: 417.886.1188 Telephone: 417.269.6829 Website: www.paraquad.org E-mail: mtrimble@swcil.org Contact: Marion Trimble OHIO Hillside Rehabilitation Hospital 8747 Squires Ln. Warren, OH 44484 Telephone: 330.856.5861 (H) Telephone: 330.856.4303 (W) Contact: Mike Logan Telephone: 330.841.3700 Contact: Sue Joy PENNSYLVANIA HEALTHSOUTH Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, PA 16602 Telephone: 800.873.4220 PENNSYLVANIA HEALTHSOUTH Greater Pittsburgh Rehabilitation Hospital 2380 McGinley Rd. Monroeville, PA 15146 Telephone: 800.695.4774 Telephone: 412.856.2584 E-mail: kristy.nauman@healthsouth.com Contact: Kristy Nauman, P.T. PENNSYLVANIA Delaware Valley Spinal Cord Injury Association 2610 Belmont Ave. Philadelphia, PA 19131 Telephone: 215.477.4946 Contact: Bruce McElrath

PENNSYLVANIA Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, PA 19102 Telephone: 215.587.3174 Fax: 215.568.3736 Website: www.mageepeers.org Contact: Marie Protesto

PENNSYLVANIA HEALTHSOUTH Rehabilitation Hospital of York 1850 Normandie Dr., York, PA 17404 Telephone: 800.752.9675 ext. 820 Telephone: 717.767.6941 Contact: Lisa Schneider

TEXAS Dallas/Ft. Worth SCI Support Group 3908 Ovilla Road, Ovilla, TX 75154 Telephone: 972.617.7911

WEST VIRGINIA West Virginia Mountaineer Support Group P.O. Box 1004 Institute, WV 25112-1004 Telephone: 304.766.4751 (W) Telephone: 304.727.4004 Fax: 304.766.4849 E-mail: steveh@mail.drs.state.wv.us Contact: Steve Hill

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 business line 301.214.4006 or our Helpline: 800.962.9629.


Spring 2005

The Importance of Exercise …and Its Pertinence to SCI By Melinda Neri and Joshua George

T

he physical, psychological, and healthrelated benefits of exercise and physical activity can be especially important for individuals with spinal cord injury (SCI), regardless of weight, age, or ability — not only to maintain a healthy body, but also a healthy frame of mind. Researchers with the Rehabilitation Research and Training Center (RRTC) on SCI: Promoting Health and Preventing Complications through Exercise, are working on studies that seek to determine the role of exercise and physical activity in the promotion of a healthy lifestyle for individuals with SCI — and the prevention of sec-

ondary conditions such as pressure sores and heart disease. One RRTC study utilized focus groups to learn about the place of exercise and physical activity in their lives. Working with individuals with SCI, researchers will then develop exercise programs for both home and communitybased settings. The focus group discussions revealed many practical concerns that prevented adults with SCI from exercising. There were concerns about safety and the accessibility of exercise facilities and equipment, but they also expressed a lack of motivation to exercise. The individuals who were quite active tended to be the ones who exercised and were physically active before they acquired their SCI. Exercise was already a part of their lives before they were injured, and they just continued exercising postinjury. But how can those who were not physically active before their injury incorporate exercise into their lifestyle? Exercising and becoming physically active after acquiring a SCI can be difficult because individuals may not have the appropriate resources (be they financial, personal assistance, or transportation) or

know where or how to exercise independently, safely, and effectively. Accessible gyms may not exist in their area, and staff may not be knowledgeable enough about SCI to train them on equipment. Motivation plays an important role in incorporating exercise and physical activity into a post-injury lifestyle, and might be lacking, regardless of the nature or degree of their injury. Proper motivation and an awareness of the benefits of exercise can be a powerful combination that can propel any individual, with or without an SCI, towards a healthy lifestyle. The Division of Rehabilitation at the University of Illinois has long recognized the importance of exercise for people with disabilities. For over fifty years, the university has hosted specialized sports programs. They currently sponsor men’s and women’s wheelchair basketball teams, a coed wheelchair racing team, and operate an accessible gym available to anybody on campus with a physical disability. All students with disabilities registered with the Division of Rehabilitation are encouraged to formulate a weekly workout schedule. Shortly after beginning a workout routine for the first time, the students begin coming in because they want to, not because they have to. They quickly realize that exercise makes them feel good, which motivates them to keep coming back. Rarely do students miss their scheduled workouts. For some individuals with SCI, the psychological benefits of exercise can be even more valuable than the physical benefits. Not only does the body’s natural chemical reaction leave it feeling better when it is active and in good shape, but for individuals with SCI, the act of exercising itself integrates them with others who are physically active, gives them a sense of accomplishment, and boosts their self-esteem and confidence. This psychological aspect of exercise can be the greatest motivational tool for those who are newly injured — as well as individuals who have had their SCI for many years. Regardless of the availability of accessible resources and facilities, personal motivation and goal-setting habits are what ultimately allow a person with SCI to overcome the accessibility and personal barriers in the way of an active and healthy life. Mel Neri, melinda.t.neri@medstar.net, is the Project Coordinator of the RRTC on SCI (www.sci-health.org) at the National Rehabilitation Hospital in Washington D.C. Joshua George, jgeorge@uiuc.edu, is a student at the University of Illinois, an elite athlete, and a 2004 Paralympian.

Tort Reform and SCI Continued from page 17

by physician negligence nationwide sue. The tort reforms proposed by President Bush are not only unjustified, but detrimental to the SCI community. Disabled claimants should not have to sacrifice their rights to recover adequate compensation for their pain and suffering. Proposals to require periodic payments would penalize injured individuals, while permitting large insurers to earn greater investment returns from the monies they retain.

Special Needs Trusts Continued from page 17

examples of self-dealing are lending money to the trust, lending trust assets to one’s family or friends, buying property from the trust, or selling property to the trust. Do obtain an employer identification number from the Internal Revenue Service and use it on all trust bank and investment accounts. You can obtain an EIN by calling 800.829.4933. Do not use the beneficiary’s social security number. Do promptly report all taxable earnings and pay any income taxes due. In most cases, if the trust was “self-funded” (that is, it contains the beneficiary’s own money, such as from a personal injury settlement), the earnings can be “passed through” to the beneficiary and taxed at his or her own individual rate. Do provide accounts to the beneficiary

19

Some lament that tort liability has driven certain products off the market. A commonly cited example is the disappearance of diving boards from hotels and public pools. With 1,000 people suffering SCI in diving accidents each year, fewer diving boards may not be such a bad thing. A federal task force study in 1977 concluded that most products driven from the market had been, in fact, unreasonably unsafe. The real “crisis” in our law today is one of perception and politics. The SCI community needs to protect its interests. Please contact your representatives now and express your concerns. on a regular basis. An account (or accounting) is a summary of the financial activity of the trust for a specific period of time, usually a year. It shows the income and expenses for the trust and how the assets are invested. Many trusts require accounts to be provided annually, if not more frequently. And even if an annual account is not an express requirement, it can be an implied requirement. As far as the beneficiary is concerned, the trust records should be an open book. The goal is simple: no surprises. A trustee with questions or concerns should not hesitate to contact a qualified attorney. The National Academy of Elder Law Attorneys (www.NAELA.com), which has chapters in all 50 states, is a good referral source. Barbara D. Jackins practices law in Belmont, Massachusetts. Her book The Special Needs Trust Administration Manual: A Guide for Trustees is available from disabilitiesbooks.com.


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Spring 2005

NSCIA Trains Airline Ground Crew By Pat Maher, NSCIA V.P. for Chapters

O

n September 14, 2004, NSCIA, in concert with our SCI Network Chapter of Greater Metropolitan Washington, D.C., conducted a training for more than twenty customer service and ground operations staff with Northwest Airlines (NWA) at Reagan National Airport to deepen their understanding of how best to serve air travelers with disabilities. The program was a collaboration between NSCIA and Ron Pettit, Director of Disability Services for NWA and chair of their Consumer Advisory Board (CAB). NSCIA intends this to be a model for similar training at NWA’s operating hubs and stations nationwide. “This is a great example of one type of partnership we can have with a business,” said Eric Larson, Director of Operations for NSCIA. “We look forward to expanding the program into other markets during the next year.” The training was presented by Pettit, Pat Maher, NSCIA V.P. for Chapters, SCI Network’s President Steve Towle and board member Ann Cody, and customer service managers for NWA at Reagan National. The NWA customer service training

was designed to assist NWA customer service and ground personnel when working with travelers who use a wheelchair or other type of wheeled mobility. It was also a chance for the three NSCIA representatives to gain deeper insight into internal issues that NWA staff faces, including operational process and security concerns. Says Maher, “I expect this training will better enable their staff to communicate more effectively with people with disabilities.” Each of the three NSCIA presenters, after introducing themselves and giving some background of their disability, gave personal examples of positive and negative travel experiences — without noting any specific carrier. This was then followed by a question and answer session. The personal perspective of the training prompted NWA staff to consider how they might have handled any of these situations. Among the topics discussed: • Safe handling and stowing of power wheelchair equipment, including the complexities of battery storage, tie downs, and power connections. Attendees discussed development of a working form that could be used to track the movement of a power chair from and to the traveler

• Disability etiquette for ticket counter, gate, and flight attendant staff • Communicating emergency management procedures to travelers who have a disability • The wheelchair user’s responsibility to understand her equipment’s operation and to be able to communicate relevant details to airline personnel (or have instructions noted on their equipment) • The importance of passengers with special needs arriving at the airport early enough to provide adequate time for staff to manage their equipment and needs • The need for airline personnel to understand that each person with a disability is unique with unique air travel needs Based on the comments following the session, this initial collaborative training session was clearly highly successful. NSCIA, our SCI Network affiliate, and our corporate partner Northwest Airlines all reported that the training was worthwhile, and worth continuing to explore in more depth. Ray Santana, Manager, Customer Service Ground Operations for NWA at Reagan National, expressed a strong interest in conducting future training sessions for the benefit of the entire customer service staff. To participate in a training session for NWA customer service staff in your area, please contact Pat Maher, NSCIA V.P. for Chapters, at pmaher@sprinc.com or 630.220.8895.

Travel Traders 1/8 b/w


Spring 2005

21

Personal Assistance at Work The Issues, Your Rights Continued from page 5

er on your accommodation, advocating for what you need. Sell them on it. Tell them how your accommodation will improve your performance, lower costs, or get the job done better. In the case of personal assistance, it might be the first time they have encountered this accommodation request. Don't assume that any resistance you perceive is discrimination; it could simply be their unfamiliarity that is stopping the wheels from turning. Note the example of Richard, who got hired at a call center as a customer service representative. He uses Paratransit to get to work, a telephone headset, an alternative computer input device for typing, and co-workers to provide PAS such as feeding and toileting. Richard had been working for over a year, when one of his co-workers who had been providing personal assistance unexpectedly informed the employer that he no longer was comfortable in the role. Richard was open and flexible to another solution. After some research and discussions with his supervisor, Richard was allowed to bring in his own personal assistant to be paid for by the employer. What do you do if the employer is unwilling to accept an accommodation of a personal assistant or is not willing to pay for the assistant? According to the ADA, employers are required to provide PAS in the form of work-related assistance, but not PAS for personal care. The law does, however, require the employer to consider allowing employees with disabilities to bring their own personal attendants into the workplace. Title I of the Americans with Disabilities Act (ADA) provides the legal authority regarding the use of personal assistance services in the workplace. Check it out at www.usdoj.gov/crt/ada/adahom1.htm. The Job Accommodation Network (www.jan.wvu.edu) has a vast database of accommodation solutions matched to almost every disability need as well as good definitions of a Personal Care Attendant and a Job Assistant. Information, creativity, patience, willingness to negotiate, belief in what you have to contribute — all the elements it takes to find the job you'll love. Establish a mutually beneficial relationship with your employer, and they will soon learn that your disability is not what determines what you have to offer their organization, but your skills and desire to live an independent, productive life. Susan Clair is an Employment Specialist at Project HIRED (www.projecthired.org) in Santa Clara, California. She was assisted by CEO George Archambeau, and Program Director, Sheila Sanchez.


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Spring 2005

Million Dollar Baby Gets It Wrong Continued from page 1

quoted in the media in such mainstream sources as the L.A. Times and the New York Daily News, and in the conservative Washington Times. "I'm saddened but not surprised that he uses the power of fame and film to perpetuate his view that the lives of people with disabilities are not worth living," said Roth. The movie is rife with flaws, and utterly misrepresents the issue of assisted suicide. Following her SCI, Maggie was shown mostly lying in a hospital bed. In reality, she would have been actively involved in a range of therapies. In a single scene she is shown sitting in a wheelchair that she cannot propel by herself, rather than a puff and sip-controlled chair that would surely have been provided by the rehab center. Maggie develops serious skin lesions on her arms and loses a leg to a severe circulatory problem. These are extremely atypical experiences — even for someone with high quadriplegia — and would more likely have been a result of negligence. Maggie had just won a bundle of

money as a boxer, which should have ensured her access to the best available rehab, adaptive technologies, and therapies to foster any possibility of recovery. In time, Maggie may well have gotten weaned from the vent or regained a degree of arm movement. She never got the chance, so illequipped was she to have made so serious a life choice as asking to die. At that point, she could not have had a clear sense of her real options in life, still in the thick of her initial grief. Indeed, Maggie had a constitutional right to a sedative and to ask for the removal of the ventilator, just as Clint Eastwood has the right to whatever form of creative expression he chooses. He simply presented the context of Maggie's choice inaccurately. Nor could the general public in the real world consider the issue of euthanasia from an informed perspective based on the view offered by this movie, but instead are manipulated by a worst-case scenario into believing that Maggie is better off dead.

Of the media's general enthusiasm for the film, journalist John Hockenberry of NBC, paraplegic with SCI, wrote that the "critics failed millions of Americans with disabilities by accepting as utterly plausible the plot-twist that a quadriplegic would sputter into medical agony in a matter of months and embrace suicide as her only option in a nation where millions of people with spinal cord injuries lead full, long lives." Says actor Robert David Hall of television's CSI — a double leg amputee and National Chairman of the Performers with Disabilities Caucus for SAG, AFTRA, and Equity — "I think somebody has to say: Even if you are severely disabled, life is still worth living." A small number of mainstream journalists got it right. Diane Carman of the Denver Post dedicated a column to the disability perspective as did the Chicago Times. The New York Times also felt it more important to address the euthanasia issue than to protect the ending of the movie from early revelation.

Chicago Times film critic Roger Ebert wrote that it was inevitable that these characters in these circumstances would have made these choices. But Maggie could just as well have realized that the capacity for perseverance and excellence she discovered as a boxer could have been brought to bear in response to her disability. Eastwood had an opportunity for a transcendent demonstration, but chose instead to go the other way solely for the sake of greater dramatic impact. We know that, regardless of the degree of impairment, people have a very great capacity to carry on with their lives following SCI. However horrifying the notion of high quadriplegia rightfully is to some people, many say that once you're there things look different. Some people with SCI do indeed have an impulse to give up their life in the beginning, but as they learn what's possible, they choose to live. NSCIA considers Million Dollar Baby's depiction of assisted suicide as the preferred choice — particularly during the initial period of grief — to be unfortunate and grossly irresponsible.

ADAPT Rolls In The Rain

promptly handcuffing themselves to the icy metal posts to symbolize the imprisonment of up to two million people in nursing homes and institutions against their will. No one came out to acknowledge them. Today, two of every three long-term care dollars go to nursing homes and institutions. Federal law requires states to provide institutional services while community services remain optional. With overwhelming evidence that people prefer to live in their own homes, many are nonetheless forced into institutionalization. Medicaid is a cost sharing agreement in which every dollar of state money appropriated for long-term care is matched by a certain amount of federal dollars. States have become dependent on federal Medicaid dollars and policy to fund their services — and constrained by the built-in bias toward institutionalization. "To demonstrate in this chilling snow with the extremely wide range of health and mobility issues of the ADAPT members during these post-Patriot Act times, took a high degree of courage indeed," said Carolyn Lieberg of Oregon ADAPT. "This is my first ADAPT action but I will keep coming back, as we all will, until everyone is free."

NSCIA: The Bridge to Business

group," says Eric Larson, NSCIA Chief Operating Officer. "It is very diverse, and includes individuals with various levels of function and relationship: quadriplegics, paraplegics, family members and friends, healthcare service and product providers, as well as general businesses. People with SCI purchase durable medical equipment and pharmaceutical products," Larson continues, "and they also go to movies, banks and restaurants, and use cell phones and computers. You also find people with varying levels of income, education, and interests. It's an entire community constellation." The SCI community has much to bring to the corporate world. "We help them with understanding how to interact with and market to people with disabilities, with problem solving and best practices," notes Tari Susan Hartman, Co-Chair of SCI Summit 2005. "We can also offer insights into product development, accessibility, and we are a pipeline to prospective employees. These are strengths that NSCIA and other SCI groups can bring to business." McDonald's Bradley notes that companies who engage in diversity marketing regularly receive feedback from members of other minority groups but rarely hear from people with disabilities. Members of NSCIA and others in the disability arena can fill this gap, and play a key role by encouraging business to broaden their outreach to our communities. If you find an accessible product that meets your needs, dine in a restaurant that has accessible seating, or attend a concert in an accessible venue, take a moment to e-mail, write, or call that organization and express your appreciation. If you see a commercial featuring a wheelchair rider, let the advertiser know you notice their marketing efforts. "The companies and organizations sponsoring the SCI Summit and SCI Hall of Fame are investing in improving the quality of life for people with spinal cord injuries," says NSCIA's Larson. "We can encourage their interest and show our appreciation by giving them our business."

Continued from page 1

Richardson, "We are still far apart." Cutting domestic spending in order to reduce the federal budget is the cornerstone of the President's budget. Medicaid is the largest and most obvious target for cuts, bringing the issue to the forefront of the national agenda as services are steadily cut. Returning from their meeting at the White House, the governors were greeted by ADAPT members surrounding their hotel chanting the message: "end institutional bias, support choice, free our people!" The governors passed the resolution, but with some disappointing amendments. They specifically declined to endorse MiCASSA, Money Follows the Person, or acknowledge the Supreme Court mandate for choice in community settings in the Olmstead decision, but they did vote to support a redirecting of federal policy to support community alternatives over institutional ones. The protesters then moved off down Pennsylvania Avenue and lined up in front of the White House fence, many people

Medtronic Continued from page 4

Mentoring Day.” They play a leadership role in the U.S. Business Leadership Network, and the Career Opportunities for Students with Disabilities and Youth to Work Coalition. And it doesn’t stop there; The Minnesota State Council on Disability named Medtronic its Employer of the Year, and ARC of Minnesota granted them the Distinguished Community Service Award. Internally, employees spearheaded two resource groups: ABLED (Awareness Benefiting Leadership and Employees with

Disabilities), and Parents of Children with Special Needs. NSCIA salutes Medtronic and The Medtronic Foundation for dedicating their efforts to improving the individual and collective lives of people with SCI/D. While NSCIA is the immediate recipient of their generosity, millions of men, women and children with SCI/D and their families are the true beneficiaries. To learn more about Medtronic and The Medtronic Foundation, visit www.medtronic.com.

Continued from page 1

Corporation. In addition to fostering McDonald's sponsorship of SCI Summit 2005, Bradley also serves on NSCIA's Business Advisory Committee, having served as its founding Chairperson. It is no surprise that a diverse group of businesses, organizations and agencies is partnering with SCI Summit 2005 and SCI Hall of Fame. Our sponsors range from foundations — like Medtronic Foundation — who have a history of understanding and supporting SCI, to more mainstream businesses like Bank of America who was among the first to include wheelchair riders in their advertising and understand the SCI community as a viable financial services market with certain needs. Their goals match perfectly with the summit's goals. SCI Summit 2005 is designed to bring together all the various players in the SCI community to assess spinal cord injury policy progress and issues in five areas: rehabilitation, research, community living, health promotion, and technology (see articles, beginning on pg. 7). Priorities and possible solutions will be presented on the final day of the Summit to panels of key federal appointees for discussion and action planning. Many of the organizations participating in SCI Summit 2005 deal with a specific aspect of SCI. They do a great job on one piece of the puzzle. Some focus on research, for example. Some work on adaptive technology and some on accessible housing. Others address personal assistance and community integration. The SCI Summit is a forum for building bridges across this broad array of groups to bring all of the pieces of the puzzle together. "NSCIA understands that the SCI Community is not a single organization or


Spring 2005

Freedom to choose where, when and how to explore life is the aspiration of virtually every American. For many persons with physical disabilities and special transportation needs, having choices to fit their individual needs provides a rewarding experience. Ford Mobility Motoring offers valuable financial and practical assistance, including reimbursement for the exact amount of vehicle adaptations, up to $1,000 on adaptive equipment and up to $200 on alerting devices, lumbar support and running boards.* Ford Credit Mobility Financing — Offering flexible finance terms for persons with physical disabilities and their families. In addition, they will finance both the vehicle and the adaptive equipment for qualified customers enrolled in the Ford Mobility Motoring Program. Roadside Assistance — Tire changes, towing, fuel delivery, lockout assistance and jump-starts are now just a phone call away. In times of need, a 24-hour toll-free number can bring assistance any day of the year.

In memory of Christopher Reeve. The Christopher Reeve Paralysis Foundation (CRPF) is committed to funding research that develops treatments and cures for paralysis caused by spinal cord injury and other central nervous system disorders. The Foundation also vigorously works to improve the quality of life for people living with disabilities through its grants program, Paralysis Resource Center and advocacy efforts.

www.mobilitymotoringprogram.com

1-800-952-2248 1-800-833-0312 TTY

1952 - 2004 *Total reimbursement is not to exceed $1,000. Options available for factory installation are not considered eligible under the terms of the program.

MA8629/12-04/1

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Spring 2005

Self-Cath CLEANLY.

Self-Cath REGULARLY.

Self-Cath MENTOR. Š December 2003 Mentor 0309015

24

www.mentorcorp.com

(800) 328-3863

SCILife, Vol. 2, No. 2  

Spring 2005.

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