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July/August, 2008

July/August, 2008

www.spinalcord.org

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Vol. 5, No. 4

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

Six Decades of Successes on the Front Lines By Santina Muha, SCILife Staff Writer

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n July 10, NSCIA celebrated 60 years of serving the disability community. Even though the organization is very much focused on the future, a diamond anniversary is a perfect reason to reflect on successes. Since NSCIA’s birth in 1948 (then known as the National Paraplegia Foundation or NPF), the organization has contributed to many victories for the SCI/D and disability communities. The recent creation of the Spinal Cord Injury Hall of Fame in 2005 alone has honored hundreds of people in the SCI/D community and is growing each year. Many of the best success stories are on a personal level. Current board president Pat Maher began his relationship with NSCIA shortly after his injury. He sought a nearby chapter to help him move forward in his life as he continued to struggle with the less evident, though often more challeng-

Britain’s Missing Top Model Challenges Fashion Industry By Beth Evans Sophie Morgan, 23, has never been your average girl. Born into a family of uncommon good looks, privately educated and blessed with popularity and charm, the scene was set for a glittering future. And then when she was just 18 years old, a car accident resulted in injuries so horrific that parts of her nose were found in her lung. Her back was broken at the T6 level. She was left with facial and body scarring which only hours of painful surgery could correct. Sophie is just one of about 11.7 million people with disabilities in Britain and one of approximately 750 million in the world. Yet these are the unseen millions, a minority whose strengths, passions, charac-

ing, aspects of living with a permanent and significant disability. Maher remembers, “I reached out to Mercedes Rauen (executive director of the Spinal Cord Injury Association of Illinois, a chapter of NSCIA) and found the support and resources that I greatly needed to begin a genuine and deep recovery. I attended several Illinois chapter sponsored support group meetings and was able, over time, to strengthen my resolve that with the foundation of family, friends and support from others living with an SCI, I would continue to forge a healthy, successful and contented life.” Similarly, David Estrada, current director of an NSCIA chapter in Boston, says, “I can’t help but wonder where I would be right now had it not been for the Greater Boston Chapter (GBC) of NSCIA.” Estrada was introduced to the GBC while undergoing therapy at a rehabilitation hospital in Boston. “I knew that I wanted to finish my senior year of college, so the GBC assisted me in finding a wheelchair accessible apartment on the campus of Northeastern ter and beauty are often forgotten. They are pushed underneath the label of disability, a label so vague and hard to define that few people really understand what it means. The depiction of disability on television across the globe is all too rare and often trapped in archaic preconception. But when used in the right way, television is a medium which has the ability to bring about real change. As part of only a small group of girls chosen from across the world, Sophie was recently launched into one of British television’s most controversial ventures to date. The series, shown on digital channel BBC3, was the brainchild of Richard McKerrow, former journalist and Channel 4 disability commissioner and current managing and creative director of television production company Love Productions. With a history of making programs which seek to dispel stereotypes, push boundaries and shake up the status quo, McKerrow’s desire to challenge the image of disability resulted in the creation of “Britain’s Missing Top Model.” After all, what environment could be more appropriate than the modelling industry? Society increasingly worships at the altar of celebrity. The jewel in the celebrity crown is the fashion industry, where only the elite,

University, where I met my first peer mentor. Within a few weeks, he taught me everything that doctors, nurses, physical and occupational therapists tried to teach me during my three months in the rehabilitation hospital. He built up so much of the self-confidence that I initially lost after my injury that I took on my greatest challenge — law school.” Both Maher and Estrada continued to return the favor as active members of their chapters. Maher helped form the Think First program, designed to positively influence the risk-taking behaviors that sometimes cause children and adolescents to expose themselves or others to injury.

Tom O’Brien is still protesting today, as he was in 1973.

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the very rich and, most importantly, the very beautiful preside. Advised by a range of disability organizations and by members of the modelling and fashion worlds, the competition was open to anyone who considered themselves disabled and beautiful. The concept of a televised modelling competition is nothing new. “America’s Next Top Model” is now in its 10th cycle and its format has been sold to an endless stream of countries hoping to repeat the same success. Then came, with its beauty pageant approach, Dutch television’s “Miss Ability,” a beauty contest for women with disabilities which was the surprise smash hit of 2006. Still, there was something lacking. Whilst proving that disability and beauty were not mutually exclusive, viewers had been unable to see the girls as they naturally were offstage, away from an audience. For many nondisabled people, it is the ignorance of the smaller details, the Continued on page 7

Sophie Morgan, who has an SCI, was a contestant on “Britain’s Missing Top Model.” (Credit – BBC/Love Productions/Mitchell Sams).


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July/August, 2008

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July/August, 2008

guest editorial SCILife STAFF MANAGING EDITOR: K. Eric Larson Senior Editor: Mike Ervin STAFF WRITER: Santina Muha Design and Layout: Nikolai Alexeev Advertising Sales: Joyce Parker Data Input: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFF Chief Executive Officer: Marcie Roth Chief Operating Officer: K. Eric Larson Resource Center Manager: Bill Fertig Information Specialist: Daniela Castagnino Information Specialist: Charleene Frazier Information Specialist: Jason Hurst COMMUNICATIONS ASSOCIATE: Santina Muha Development Director: Russell Mark Web Services/Publishing: J. Charles Haynes, JD Webmaster: Nikolai Alexeev

Board Of Directors Executive Committee

PRESIDENT: Patrick Maher Immediate Past President: Harley Thomas (1939 – 2007) CHAIR, EXECUTIVE COMMITTEE: David Boninger Vice-President for Chapters: Deb Myers Vice-President for Development: Milita Dolan Secretary/Treasurer: Janeen Earwood BUSINESS ADVISORY COMMITTEE LIAISON: Tari Hartman Squire CEO/EXECUTIVE DIRECTOR: Marcie Roth

Directors Paul Aronsohn Pamela Ballard, MD Don Dawkins Carmen DiGiovine John Fioriti Gretchen Fox Veronica Gonnello Andy Hicks Paul Mortensen Christine N. Sang, M.D., M.P.H

General Counsel Leonard Zandrow, Esquire

SCILife PUBLISHERS Publisher: J. Charles Haynes, JD SCILife is a publication of the National Spinal Cord Injury Association One Church Street, Ste. 600 Rockville, MD 20850

SCILife is dedicated to the presentation of news concerning people with spinal cord injuries caused by trauma or disease. We welcome manuscripts and articles on subjects related to spinal cord injuries or the concerns of persons with disabilities for publication, and reserve the rights to accept, reject, or alter all editorial and advertising materials submitted. Manuscripts and articles must be accompanied by a self addressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertising published in SCILife do not imply endorsement of organizations, products or services. If you have any questions related to your membership with NSCIA, or would like to join, contact us at HDI Publishers, PO Box 131401, Houston, TX 77219-1401, e-mail: membership@spinalcord.org, fax: 713.526.7787, or phone us toll free at 800-962-9629. For questions not related to membership, write to: SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401 voice: 713.526.6900 fax: 713.526.7787 email: info@spinalcord.org or website: www.spinalcord.org.

For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston TX 77219-1401 tel: 713.526.6900 fax: 713.526.7787 email: chaynes@hdipub.com www.hdipub.com SCILife © 2008

Why I Support Barack Obama By Kareem Dale

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ope. Change. “Yes We Can.” For many doubters, these are just words. But for Americans with disabilities who grew up without closed captioning, without descriptive video for movies, without computers that talk, without accessible forms of communication, without the Americans with Disabilities Act, words are at the foundation of progress. And these words ring true with the promise of a better tomorrow, the promise of educational equality, the promise of equal access to employment, the promise of the right to live independently, the promise of the ending of discrimination based on disabilities and the promise that all Americans, no matter what their disability, will be treated the same as every other American. For me, an American with the disability of being partially blind, Senator Barack Obama embodies the very qualities our next president will need to ensure that Americans with disabilities will have a full, fair and equal

Why I Support John McCain By Donna M. Jones

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t was September 2007 and I was moving to Washington, D.C. to pursue my dream of being a disability advocate. The presidential campaign was in full swing and I envisioned being a volunteer for a candidate whose record speaks of being a champion for the disabled of America. A search on the Internet produced facts that Senator John McCain had proven his commitment to empowering persons with disabilities since his early days in Congress. Armed with this information, I headed to McCain headquarters to see how I might be of help to the campaign. The staff welcomed me and listened to my convictions that the senator would support our desire to be self-reliant and to be active members of society. I thanked everyone for their time and willingness to listen to my ideas.

opportunity to compete for every scholarship, every award, every job, every athletic contest, every movie role, every music contract and every single thing that a person’s mind can fathom. The word “can’t” has been said so many times to me, it might as well be tattooed on my chest. And now, we have a candidate who is saying, “Yes, We Can,” and who is committed to real change. Senator Obama’s legislative record illustrates his staunch support of Americans with disabilities. For example, he sponsored and voted for a bill that created the Emergency Evacuation Plan for People with Disabilities Act. Senator Obama also sponsored and voted to create the Abuse of Adults with Disabilities Intervention Act, which protects adults with disabilities from harassment, intimidation and interference with personal liberty. Senator Obama’s plans and policies for the future also give all Americans with disabilities reason for hope. Senator Obama is willing to hold Congress’ feet to the fire to fund 40 percent of the excess costs of educating children with disabilities as required by the Individuals with Disabilities Education Act. Congress has gotten away with allocating no more than 17 percent. In addition, Senator Obama proposes to invest $10 billion per year in early education and developmental programs for children ages zero to five. That’s the type of real change that Americans with disabilities desire. We also have a candidate who is going to make sure that there is sufficient funding for vocational rehab programs, which are critical to supporting Americans with disabilities and their successful matriculation through college and graduate programs. I could not have succeeded in college or law school without vocational rehab services, but there must be substantial improvement in I received a call 48 hours later that changed my life. I was offered the position of national coordinator of the Americans with Disabilities for McCain Coalition. My duties include reaching out to disability advocates and people with disabilities to address the communities’ concerns, collaborating with experts to draft disability policy for Senator McCain’s platform and supporting grassroots efforts to encourage our community to vote for Senator McCain. I, a woman with spina bifida with first-hand knowledge of the realities of living with a disability, had been hired to advocate for people with disabilities in a presidential campaign! This single action speaks volumes about Senator McCain’s commitment to directly involve our community in this very crucial presidential election. We have experienced first-hand the positive impact of the Americans with Disabilities Act in our lives, but how many of us are aware Senator McCain played a key role in crafting Title IV, which deals with access to telecommunications services for hearing-impaired and speech-impaired individuals? He introduced the Telecommunications Accessibility Enhancement Act of 1988. He also was a chief co-sponsor of the Television Decoder Circuitry Act of 1990, which required new TV sets to have a built-in decoder capable of receiving closed-captioned programming. Our friends who are blind or who have visual impairments applauded Senator McCain’s efforts to amend Title II of the Social Security Act to restore the link be-

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these programs. Senator Obama is ready to institute the necessary improvements. That’s the type of change that Americans with disabilities long for. Senator Obama is the candidate to provide equal employment opportunities for Americans with disabilities. He is willing to start with the federal government by increasing its recruitment, hiring, retention and advancement of workers with disabilities. He also will ensure that Americans with disabilities can more effectively participate in the labor market by creating a National Commission on People with Disabilities, Employment and Social Security to address work disincentives in the SSDI, SSI, Medicare and Medicaid programs. That’s the type of change that Americans with disabilities must have. Senator Obama is also a sponsor of the Community Choice Act, which will put Americans with disabilities back in control of their living arrangements. From ensuring that all polling locations are fully accessible, to appointing judges who understand the importance of enforcing the ADA, to providing additional funds to the Equal Employment Opportunity Commission to enforce discrimination laws, to expanding the Family Leave Act, Senator Barack Obama is the candidate to lead the push for equality for Americans with disabilities. Because of Barack Obama, the 54 million Americans who live with disabilities will have an equal shot at realizing the American dream. I am proud to advocate for the disability vote on behalf of the next president of the United States, Barack Obama, a man that I believe will substantially improve all of our lives. Kareem Dale is National Disability Vote Director for Obama for America. tween the maximum amount of earnings by blind individuals permitted without demonstrating ability to engage in substantial gainful activity and the exempt amount permitted in determining excess earnings under the earnings test. Many of us have experienced discrimination by airline employees in our travels, yet very few of us realize that we have a means to protect ourselves against such abuses. Senator McCain reached across the aisle and worked with Senator Ron Wyden (D-Ore.) and fellow Senator Olympia J. Snowe (R-Maine) to draft the Air Transportation Improvement Act (S.82). This law requires foreign airlines to comply with the Air Carriers Access Act. It also requires that all claims of discrimination be investigated and all data recorded and it increases penalties for violations. The most important part of this law is that it does not impact an individual’s right to private action and allows plaintiffs to collect reasonable attorney fees. As a daughter of a World War II veteran, it is of personal importance to see that our veterans with disabilities receive the support and consideration they deserve for serving our country. Senator McCain co-sponsored a measure to allow disabled veterans to be enrolled in the Federal Employees Health Benefits Program, the same health insurance offered to senators and members of the House of Representatives. He has also supported higher payments to disabled veterans and survivors of veterans who died because Continued on page 15


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July/August, 2008

from the executive director

Voting Matters! By Marcie Roth, Executive Director and CEO, NSCIA

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t seems like the topic of voting is all around us! At NSCIA, as I write this, we are in the final days before learning whom our members have elected as our 2008 SCI Hall of Fame inductees. We have great nominees and voting has been strong. And, of course, across the country, it is now only a matter of weeks before we elect a new president and a new Congress. In January, the president begins the process of standing up a new administration. This new administration will include cabinet positions that will have a sweeping impact on all Americans, including Americans with disabilities and those who serve them. We will all be looking at the senior appointments in the U.S. Departments of Justice, Labor, Health and Human Services, Education, Housing,

Transportation, Homeland Security and others as well as appointees in offices from the White House to subCabinet and other federal agencies. Transition planning begins immediately after the election is decided. (In fact, some transition planning is already underway!) The process of getting nominees confirmed by Congress begins as soon as the first session of the 111th Congress opens on Jan. 3, 2009. As the 111th Congress begins, every bill that failed to pass before the 110th Congress came to a close will need to be reintroduced, if there is a will to do so. This is when the push for new legislation also begins. For anyone who has an interest in impacting public policy, now is a great time to get involved in the political process. Volunteer for a campaign and begin to educate others about your issues as you lick stamps or knock on doors. You never know who will end up as staff to your candidate, or who might also share your concerns and want to work with you on shared initiatives. Campaign volunteers are highly valued and you may even be able to educate the candidates themselves, if you can get close enough (easy with local office, but harder, of course with state and national candidates). If the campaign offices are inaccessible, work with the campaign managers to remove barriers so you can participate. If you have difficulty, speak up. And, please, please, even if you don’t volunteer, get out to events. People with disabilities need to be seen as real participants in the political process. Our presence and

participation sends a powerful message that our votes are worth seeking and our concerns and ideas matter. With 40 million potential voters with disabilities, if we show up and call attention to our issues, we will be far more successful in advancing those issues. Access to health care, housing, employment and training, preparedness, education, civil rights, transportationand so many other issues affect the quality of life for 54 million Americans with disabilities and we can “be the change we wish to see,” as Mahatma Gandhi once said. NSCIA is a leading advocacy organization on these and other critical issues affecting people with SCI/D. We need your support to be able to continue our work. Do you want to help us to strengthen our ability to take a leading role? Even if you can’t afford more than a small donation, know that that is deeply appreciated. And there are other ways you can help. Do you have contacts with individuals or companies that seem to want to help people with SCI/D? Please introduce us! Thanks for your nominations to the SCI Hall of Fame. Please do join us in New Orleans on Sept. 25, 2008 for our gala, annual meeting and our exciting town hall and Policy Roundtable on Emergency Preparedness, keynoted by General Russel Honoré. Wynton Marsalis and Rep. Jim Langevin (D-R.I.) join General Honoré and a stellar list of host committee members for the evening’s festivities and with Ellis Marsalis and his quartet and Jonathan Batiste and his trio, it will be an evening to remember! See you there!

Got a Story? Share it! “I know what it’s like to face a life changing event like a spinal cord injury, and how much the right support can mean to someone in those first few days and weeks after the injury. I’ve been truly blessed in my life and this is a chance for me to make a difference for others.” -- Soul music legend and SCI Hall of Fame member, Teddy Pendergrass

NSCIA is looking for first hand member stories that carry a message of hope and tangible support for people with new spinal cord injuries or disease. If you’d like to share your story, or know someone else who might, visit www.spinalcord.org/mystory

Hospital Members of NSCIA In addition to our more than 21,500 individual members, NSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people with spinal cord injury and disorders. UAB Model Spinal Cord Injury Care System-Spain rehabilitation Center Birmingham, AL (205) 934-3283

University of Pittsburgh Model Center on Spinal Cord Injury Pittsburgh, PA (412) 586-6941

The Rocky Mountain Regional Spinal Injury System-Craig Hospital Englewood, CO (303) 789-8306

Northwest Regional Spinal Cord Injury System-University of Washington Seattle, WA (206) 685-3999

National Capital Spinal Cord Injury Model System National Rehabilitation Hospital Washington, DC (202) 877-1425 (202) 877-1196

North Memorial Medical Center Robbinsdale, MN (763) 520-5200

Georgia Regional Spinal Cord Injury Care SystemShepherd Center, Inc. Atlanta, GA (404) 350-7591 University of Michigan Model Spinal Cord Injury Care System Ann Arbor, MI (734) 763-0971 Northeast Ohio Regional Spinal Cord Injury System Cleveland, OH (216) 778-8781

Brooks Rehabilitation Hospital-University of North Florida Jacksonville, FL (904) 858-7600 Pinecrest Rehabilitation Hospital (CARF) Delray Beach, FL (561) 495-0400 Baylor Institute for Rehabilitation Dallas, TX. (800) 422-9567 Healthsouth Rehab Hospital of Baton Rouge Baton Rouge, LA (225) 927-0567

Cardinal Hill Rehabilitation Hospital Lexington, KY (859) 254-5701 Moses Cone Health System Greensboro, NC (336) 832-7000 Northridge Hospital Medical Center Northridge, CA (818) 885-8500 Ext. 3669 Santa Clara Valley Medical Center San Jose, CA (408) 793-6434 Regional SCI Care System of Southern California Rancho Los Amigos Downey CA (582) 401-7111 Tulane Inpatient Rehabilitation Center Metairie, LA (504) 988-5800 Madonna Rehabilitation Hospital Lincoln, NE (402) 486-8296 The Rehabilitation Institute of Kansas City Kansas City, MO (816) 751-7900

Visit spinalcord.org for a current listing with web site links.

The Institute for Rehabilitation and Research (TIRR) Houston, TX (713) 797-5946 Healthsouth Rehabilitation Hospital Columbia, SC (803) 254-7777 SSM Rehab St. Louis, MO (314) 989-2444 Froedert Memorial Lutheran Hospital Milwaukee, WI (414) 805-3000 Northern New Jersey Spinal Cord Injury System Kessler Institute for Rehab West Orange, NJ (973) 243-6849 Organizational Members of NSCIA Florida SCI Resource Center Tampa, FL (800) 995-8544 Push to Walk Bloomingdale, NJ (973) 291-6370


July/August, 2008

from the president

The Maelstrom that is 2008 By Patrick Maher, President, NSCIA Board of Directors

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ith each passing week, let alone month, of this key year, there seems to be another critical event, transition or challenge that will ultimately impact the wellbeing of not only those of us living with a spinal cord injury or other disability, but many among us who make a living in the support of the well-being of those living with a disability. Some examples of this are the over-

Accessible Racing is a Rush By Santina Muha, SCILife Staff Writer “There’s no way you are getting me on a race track!” That is what I said when I met Brian Hanaford at the Abilities Expo in March. Hanaford was in an automobile accident in 1980, sustaining a traumatic brain injury. He says, “After my injury I learned simple daily tasks were huge obstacles-brushing my teeth and signing my name became very challenging. Not only did I have to readjust physically to the way I approached life, mentally I had to learn that my body would no longer respond to achieve what was once a simple physical task.” But he slowly regained most of his abilities, to the point where he performed an internship at Stafford Motor Speedway under the guidance of ESPN commentator Mike Massaro. That inspired him to found Accessible Racing, a nonprofit organization that provides persons with disabilities the experience of driving a NASCAR style racecar modified with hand controls. He got together with Peter Ruprecht, owner of the accessible vehicle and driving products company Drive Master and one of the founding members of National Mobility Equipment Dealers Association. They built a yellow and blue authentic racecar accessible with hand controls and a swivel seat to enter. As I sat in the display seat that day at the Expo, I felt secure knowing the car was not gassed up and had nowhere to go in the large convention center.

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whelming passage of the ADA Amendments Act (HR3195) (AAA) in the U.S. House of Representatives, the delaying of Medicare’s competitive bidding requirement for durable medical equipment and supplies and of course the selection of our next president, with his own orientation and perspective on the challenges that we face to become healthy, successful and fulfilled citizens. And of course there was the first ever presidential candidates’ forum on disability issues held in Columbus, Ohio July 25, with NSCIA as a host sponsor. The ADA Amendments Act is widely considered to possess the weight and breadth to rebalance the intent of those luminaries who drafted the original legislation. By virtue of a succession of court decisions limiting the definition of disability and the opportunity to redress employers’ hiring/firing and related determinations under the law, (University of Alabama v. Garrett., Sutton v. United Airlines, Inc., Murphy v. United Parcel Service, Inc., and Albertson’s Inc. v. Kirkinburg) many of our staunchest advocates in both the disability community and Congress worked tirelessly to recapture the validity of our bill of rights. We are deeply grateful to them. The erosion of the ADA over the years at the hands of the courts had to be addressed, and when the AAA finally passes

the senate it will represent both a highly tangible achievement and a restoration of faith that our nation recognizes the ADA as the cornerstone legislation that it is. The implementation of a competitive bidding process for durable medical equipment—which includes wheelchairs, scooters, prosthetics, orthotics and other supplies –- began in 10 specified regions before being delayed following a public outcry. While I’m as hopeful as anyone that the program can become more efficient and weed out unscrupulous operators seeking personal gain from the very real needs of others, I am equally concerned that diligent and trustworthy small and medium sized business owners are not priced out of the system. Much of this equipment requires multiple evaluations, fittings and follow-up servicing. It’s not one size fits all and I am fearful out-of-the- box provision might become the status quo under a competitive bidding environment. What a great victory for both the many exceptional providers of quality equipment and service and their clients with disabilities that they were able to achieve this 18month window delay of the bidding process so that CMS can more critically review and determine the best course of action for all involved – the consumers of this equipment being paramount in that dialogue. Much

When I was asked to attend the very first Accessible Racing event as a journalist, I said yes. I knew from just sitting in that seat for a few moments that this was going to be a fun, interesting, history-making event and I was excited to watch my friends try out the car. Still, I was convinced I was not going to get behind the wheel. Luckily for me, the Accessible Racing team would not take no for an answer. Before I knew it, I was suited up in a flame retardant red racing outfit and a helmet. My spinal cord was injured in an automobile accident, so this was the ultimate “getting back on the horse experience” for me. Surprisingly, I felt almost as secure driving around the track as I did when we were stationary at the Expo. The controlled environment of an open track, with no other cars on the road and no stop signs or red lights, was a freeing feeling that I hope everyone gets a chance to experience. Before we even got behind the wheel of the racecar we were treated to a lesson from Skid School, a program on safe and defensive driving. We learned certain defensive driving skills to prepare us for situations we may face in everyday driving. Each participant sat in the passenger seat of a vehicle with a member of the training team. They taught us braking, slalom and emergency lane change. Most licensed drivers feel confident in their driving skills, but when faced with a split-second decision they can panic and cause an accident. The Skid School professionals taught us how to react in such situations on a safe, closed course. This was the perfect precursor to getting behind the wheel of the racecar. After our Skid School lesson, we each took a practice run in the racecar in the parking lot. Then we headed to New Hampshire to get on the open track. I felt like Danica Patrick as I rounded the track (although if you ask my friends who were there they will tell you I was go-

ing just a little Santina Muha takes the accessible racecar for a spin in Massachusetts. slower than the auto racing star). Hanaford told me, “We’re breaking down barriers and creating opportunities. This is entertainment to a group of people who didn’t have the chance before because this simply just did not exist.” As I see other wheelchair users around me partake in adventurous activities, I am inspired to do the same. Although I am usually the biggest baby in the crew, I am portunities like this one are a rare comhappy to say I have driven a racecar on a modity, and I am very thankful that I was race track. I do not know many people who able to capitalize on this one. The day was can say that. I believe as Accessible Racing amazing. The support, effort and care of evexpands, more people will be able to share eryone involved were well beyond anything the thrill that we lucky inaugural racers we could have hoped for. The instruction was clear, informative and applicable. All in have already felt. “The thing that’s making it so successful all, this was nearly the most fun I have had is the people who are involved and helping in my six years post injury.” I would recommend this experience to us grow,” Hanaford told me. The spectrum of participants says it all. Men and women, anyone who is interested; especially if you paras, quads and people without disabilities acquired your injury from auto accident from New Jersey, Montana, Colorado, Ala- and are a fearful driver as a result. It is a safe bama, Vermont, Pennsylvania, Massachu- and fun way to face that fear. After a lessetts and New Hampshire, ages 22 to 50, son or two with an organization such as the Skid School, you will feel like you have the gathered together. “Every aspect of Accessible Racing leaves secrets to safe and defensive driving. And you wanting more,” said fellow racer and after gunning your racecar on the track, NSCIA board member Veronica Gonnello. you will feel like the master of the roads. Visit www.accessibleracing.com to learn She calls it “a totally vicious experience.” Another friend and NSCIA member, how to experience the thrill of racing for Lt. (retired) Ian Brown of the United States yourself, or to learn how to get involved as Air Force, said of Accessible Racing, “Op- a sponsor or a volunteer.

to its credit, the administration of Medicare has made concerted efforts to communicate with providers and beneficiaries to seek input. If you are a beneficiary of or provider of the Medicare program, I encourage you to stay engaged in this process in your own interest. The website www.medicare. gov provides very up-to-date and reliable information on all Medicare programs, requirements, eligibility and current items of interest, including the competitive bidding process. At the presidential forum, Senator McCain addressed the gathering of about 500 people via satellite and Senator Tom Harkin (D-Iowa) was there in person representing Senator Obama, who was out of the country. This was an historic, nonpartisan forum on national disability policy. Bill Fertig and Marcie Roth of NSCIA both attended and were very pleased with the event. Fertig noted that it represented an unprecedented unification of disability organizations to have our voice heard by these and all future presidential candidates, while serving as a natural initiative to build and strengthen our voting block at the national level. The live event was also webcast to a far broader audience. Stay tuned everyone. It should be quite a ride!


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July/August, 2008

Six Decades of Successes... Continued from page 1

He worked with Eric Larson, now chief operating officer of NSCIA, to found Moving Mountains, an outdoor adventure and growth program. Estrada says, “Although I swore that I’d never go back to the hospital where I rehabbed, as I became more involved with the GBC’s peer visitation program I realized that it would be a disservice to the newly injured who would benefit from the knowledge bestowed upon me by my mentor.” When 2007 SCI Hall of Fame inductee Mark Johnson was first injured, there was no NSCIA chapter in his area. So he quickly formed one in Charlotte, N.C. in 1977. Johnson remembers, “My first involvement was when NSCIA was NPF. The ‘Three C’s’ was the motto: Care, cure and coping. We started a basic support group affiliated with the rehab hospital in Charlotte. So when you organized your chapter you always tried to plan membership activities around one of the three C’s.” Don Olson, Ph.D. faculty member of the school of medicine at Northwestern University Medical School in Chicago and retired director of education and training at the Rehabilitation Institute of Chicago, was president of NPF in the 1970s. “That was a long time ago, but a time full of good memories and wonderful people, such as Tim Nugent, who was president (of NSCIA) before me, and James Smittcamp and Ann Ford (who) were invaluable resources and wonderful leaders. I miss Jim Smittcamp and his good advice. What a treasure he was for those with SCI!” Len Zandrow, current general counsel of NSCIA’s board of directors, remembers another important leader. “When Mick Countee was executive director, the office was in such bad shape financially. He was so committed to keeping the operation going that he worked for years without any salary or financial compensation.” Ford, who was also with NSCIA in the 1970s, says, “To me, the importance of NPF/NSCIA over the years I knew it so well was the slow, steady progress toward implementing a system of care and treatment that gave persons with SCIs the ability to be healthy and pick up the pieces of their lives, and the advocacy that opened the doors of opportunity so they could achieve their own goals without insurmountable barriers.” NPF/NSCIA was also instrumental, Ford says, in promoting and supporting “research that has led to great advancement in knowledge and the technology and treatment available to today’s SCI individuals. This is why the organization was founded and the vision we had in those days.” Olson says, “We had a terrific group of scientists who met quarterly with the emphasis on spinal cord regeneration. There was very little to no support of that concept at that time. Barth Green, now an SCI Hall of Fame member, was one of the residents.” Many of the people who were active

in NSCIA have found themselves at the front line of history. Tom O’Brien and his wife, Edy, were longtime active members of the Massachusetts Association of Paraplegics, which became an NSCIA chapter. He remembers, “In a letter to Congress on March 27, 1973, President Nixon vetoed the Rehabilitation Act, calling it ‘bad legislation beneath alluring labels.’ The Senate sustained the veto several days later and a firestorm of protests erupted.” In New York City, O’Brien says, 80 protestors, led by Judy Heumann, staged a sit-in that stopped traffic. Meanwhile, in Boston, “Dozens of people living with disabilities, and many of their family and friends gathered on the plaza in front of the John F. Kennedy Federal Office Building. The usual trappings of a protest were all in place: Signs, a bullhorn, handouts, etc. The unusual aspect of this demonstration was that white canes, crutches, walkers, even a few old wheelchairs were prominently displayed. The media was well represented and once it became clear that the TV cameras were in place, a figure emerged from the shadows dressed in a navy blue suit, red tie, and carrying a large sledgehammer. A Halloween mask of Nixon eliminated any doubt who this person represented. The sledgehammer began battering this collection of symbols.” The face behind the Nixon mask was Edy. Tom O’Brien says she was reluctant to participate at first, but she came to realize it was critical to point out that Nixon’s veto was an egregious act that must not stand. Thus, he says, “The viability of the handicapped was established with the success of this effort and doors to city and state offices were beginning to open and cooperation emerged that had not previously existed.” NSCIA members have also been key in bringing about justice through the court system. Paul Logan was a founding member of the GBC and chapter president from 1991 to1996. In the final year of his term, NSCIA and the New England Paralyzed Veterans of America (PVA) collaborated on a lawsuit against the brand new 18,000seat Fleet Center (now known as TD Banknorth Garden) in Boston. Logan says, “The lawsuit was filed after unsuccessful attempts by NSCIA and PVA to persuade the builder to adhere to ADA regulations relating to line of sight viewing and ticket distribution. Eventually, an agreement was reached which produced increased ADA seating, legal line of sight viewing and a reasonable ticket distribution program.” John Fioriti, former director of the GBC and current NSCIA board member adds, “This was a landmark case because the line of sight viewing was not clear in the ADA regulations. Also, the collaboration between NSCIA and PVA was an important reuniting of the two groups that had grown apart over the years.” It has been a long and challenging journey for NSCIA and people living across the nation with disabilities. But when one looks at the improvements that have been made for all involved, it is evident that it has been worth the struggle. NSCIA and all involved continue to fight the good fight and look forward to what the future holds.

Three giants who helped steer the NSCIA into the 21st century: From left to right Jack Dahlberg (past president), Doug Heir (past president and Paralympics champion) and Mick Countee (former executive director), attend the annual meeting and gala in Washington, D. C. in the fall of 1999.

Helping Others from the Comfort of Home When NSCIA went virtual In the 21st Century, NSCIA has been in the forefront of increasing employment options for people with disabilities through the use of a virtual office. NSCIA operates out of a virtual office, with staff and board members communicating with themselves, members and consumers via the Internet, phone, fax and all the wonders of modern communication technology. Not only is it a more efficient and economical way of doing business, it makes it easier to hire people with disabilities by removing obstacles to working like commuting. People with disabilities do not have to jump through as many hoops to get to good jobs. Good jobs come to them. Resource center information specialist Charleene Frazier, R.N., M.S. remembers the scary transition. It was the year 2000 and a time for new ideas. The NSCIA office and resource center was housed in a six room suite in an office building in Silver Spring, Md. Staff meetings began to include discussions about closing this office and opening a virtual office for the resource center. That thought was fraught with many uncertainties and a host of unknowns! Was it even possible? Could we survive? How would we function? How could we communicate? What was needed? After a year of discussions, we took the big leap in January 2001. The Silver Spring office was closed and the address for NSCIA was moved to headquarters in Bethesda, Md. Headquarters received mail, provided conference space and forwarded all calls for the resource center to the three RC staff. Each staff member was provided a computer, printer/fax machine and a very limited supply of books and resources. We were required to have high speed internet service, which was limited in many of our neighborhoods in 2001. We made a concentrated effort to develop files of resources and guidelines that could be stored on our computers. We dismantled a room of hard copy resources. This transition occurred at a time that SCI resources available through the internet were becoming increasingly valid. More information was being provided by the various centers that housed the Model Systems of SCI Care, rather than an assortment of personal, consumer websites. We learned how to determine the validity of a site through codes of approval such as the HON (health on the net) code and others. At the end of 2001, we celebrated that we were still functioning and learning each day a better way to serve our consumers as well as make our operations more efficient. We learned how to hire and train personnel for the virtual office, improved our methods of communication and continued to expand and enlarge our resources and references, now stored on our computers. We transitioned to staff meetings by teleconference. No longer did we need a room full of books that required tedious examination and perusal to find information. We had truly become virtual!! As time evolved, it became necessary to enlarge the RC staff and, finally, in 2005, to hire a full time manager. Today, communication is the vital link that keeps this office running smoothly! We hold staff meetings once a week and e-mail is used continuously amongst the staff. We are held accountable for the quality of services we provide to a membership that is expanding daily. Almost daily we receive e-mails thanking us for the services we have provided to people with new SCIs, people with complicated chronic spinal cord histories and other individuals or families with a variety of unique needs. It has been seven years and we are a staff that resides in several different states, takes pride in our work and is able to save gas while helping others from the comfort of our home offices.


July/August, 2008

Unfair Medicaid Estate Recovery Program Can Bankrupt Families

T

he Medicaid Estate Recovery Program (MERP), which was enacted by Congress in the 1993 Omnibus Budget Reconciliation Act, allows states to lien property from the estate of a deceased person if he or she received Medicaid assistance and is over age 55. States are also allowed to recover from any interests that the deceased person held at his or her death. This means your spouse and children may have to pay money back upon your death and a lien can be put on your home and all assets that you have accumulated over the years working. The extent of recovery varies depending on your state’s recovery program. The federal government, through vocational rehabilitation and other programs such as Pell grants, spends millions of dollars annually on education for those with disabilities. Kevin Morrill was injured in 1969 and notes that his education was funded by vocational rehabilitation and Pell grants. He worked at a community college in Miami for 17 years and many of his students with an SCI were getting an education with the hope of having a career and accumulating assets. “(But) unless one can secure employment with a salary of more than $50,000 a year, very few, if any of us with an SCI will be able to pay for our attendant care,” says Morrill.

Missing Top Model ... Continued from page 1

confusion over how daily chores are completed and how independence is upheld, that keeps the gap between disabled and nondisabled so wide. Demystifying disability is a giant step toward equality. There were 350 applicants for “Britain’s Missing Top Model,” with disabilities ranging from debilitating physical impairments to hidden disabilities. The need to match the basic requirements of a model was the foundation of the selection process and with television programming and modelling alike, personality is key. Determination, strength, charisma and likeability were of equal importance when deciding who would stand out enough to convince the modelling industry that now was indeed the right time to challenge its limited perceptions of beauty. Finally, eight girls were chosen to leave their homes and live together in a luxury London apartment, their base for up to five gruelling weeks in which they would need to prove themselves time and time again. Each week, they were presented with a new challenge based on situations they would

“I went back on Medicaid in 2003. I turned 55 this year. If I am on Medicaid when I die, a lien can be put on my house. At that time my wife cannot refinance the house or sell the house without all of the assets going to the state government. If we have any money in trusts or saving accounts, that too can be taken by the state for reimbursement. Over 20 years of hard work and everything would be gone. I cannot will or leave my family anything. “We all are going to age. For those of us with a spinal cord injury who have worked, at 55 we become a liability and a burden to our families. This puts more stress on us and our families. I have contacted eldercare lawyers and estate lawyers who all agree this law discriminates against the elderly and disabled. It is a predatory loan directed at us. I have spoken to AARP and other groups who advocate for the elderly and disabled. No one is addressing this issue.” Morrill believes the MERP program should be a priority for all agencies who advocate for the disabled. “MERP affects all of us with an SCI,” says Morrill. “But for many it is an unknown sleeping giant. Should our desire to get an education and live an independent life be dashed by a federal law? Our government passed the ADA and other laws so that those with disabilities can have a fair chance at employment and independence. Why? So at age 55 the government can punish us by taking our earnings and homes that we worked hard for? “All of us know that attendant care is paramount among issues for people with SCIs. Accessible attendant care that will allow people with SCIs to still be allowed to work is imperative. Medicaid is still an unfortunate necessity. The disabled community needs a strong voice. How can we enter into accessible buildings and work with assistive technologies if we cannot get out of bed without being punished for it face and overcome as working models. As the group diminished with each passing challenge, the unique melting pot of camaraderie and competition continued. Friendships were formed, support was offered and arguments erupted. Each week their performances and the resulting photographs were presented before a panel of four experts from across the modelling and fashion industry As the buzz around “Britain’s Missing Top Model” grows, it can only be a matter of time before the format can be seen the world over. It is a format designed not only to entertain, but also to invite viewers on a journey of discovery, in the hope that they too will broaden their minds and discover that disability is a difference, not a barrier. Whilst “Britain’s Missing Top Model “ is only currently available on British television, highlights, clips and program details can all be viewed from anywhere in the world on the BBC website (bbc.co.uk/ missing model/). The BBC’s own disability website, Ouch!, also has exclusive information and behind the scenes footage (bbc. co.uk/ouch/). Here the world can watch this group of beautiful young women as they challenge us to see beyond their disabilities and to recognize that beauty can embrace difference.

in the end?” Morrill’s wife has created a website for the purpose of getting people to sign a petition to end MERP (http://healthcare2008. bravehost.com). “With enough signatures, we hope to submit this to Congress and have them repeal MERP.” As devastating as MERP can be, impoverishment through MERP can be avoided, in some cases, through estate planning, according to John M. (Jay) Gleason, an estate planning attorney. Gleason distinguishes between California, where Morrill resides, and Illinois, where Gleason lives and practices law. The critical difference here is that California is a community property state and Illinois is not. In a community property state, the assets acquired by either spouse during a marriage are indivisible. Each spouse owns half. Illinois is a separate property state, meaning each spouse can own his or her own assets, without being forced to make the estates of each spouse equal. Says Gleason, “Hypothetically, suppose Mr. Smith owned a house in joint tenancy with his wife. Suppose they also owned a brokerage account worth $200,000. These are their only assets. They are both over age 55 and have a child. Mr. Smith has been diagnosed with the early stages of Alzheimer’s and has slight dementia. Mr. Smith is totally capable of identifying the objects of his bounty and understands the nature and value of his assets. Mrs. Smith is completely healthy and will continue to reside in their home. Mr. Smith will eventually need to move into assisted living. In Illinois, due to the federal spousal impoverishment rules, the house is an exempt asset. “Mr. Smith could gift Mrs. Smith the entire house and $104,400 out of the brokerage account and be able to exclude those amounts from the spend down. Mrs. Smith could then create a revocable living

7

trust, which provides that at her death, the house and the new brokerage account be gifted to their child and not Mr. Smith, to have it pass without requiring the Medicaid reimbursement. Because the residence is an exempt asset, it would be a good idea to invest in the residence, as opposed to other investments. Spending the money on roofing, plumbing and additions will all be adding to the exempt asset, as opposed to subjecting the same investment to a spend down.” This type of planning may not be available in California, due to the community property rules. But in Illinois, this type of planning is legal. Gleason’s office claims to have successfully created such plans. Often, the residential spouse passed away prior to the spouse requiring long-term care. The assets passed to the children clear of any spend down requirement. “Fees for estate planning vary,” notes Gleason. “If our office is only required to create a trust for one spouse, with supporting documents, (wills, powers of attorney, living wills, a deed for the house) our standard fee is $1750. If we need to create two trusts, the fees usually run around $2900 including all supporting documents.” John M. (Jay) Gleason, J.D., LL.M, is an estate planning attorney practicing at the law offices of Bruce Kiselstein, Ltd., 930 E. Northwest Highway, Mt. Prospect, IL 60056. Phone: 847-670-8200 and e-mail: jay_gleason@sbcglobal.net. Kevin Morrill has been a C4 quadriplegic since 1969. He received his education from California State University and has worked in education as a counselor, instructor, speaker and advocate for the disabled for over 20 years. Info on the MERP program: U.S. Department of Health & Human Services http://aspe.hhs.gov/daltcp/reports/estaterec.htm.

Sophie (seated left) with two other contestants, Kelly and Jess. (Credit -BBC/Love Productions/Amelia Troubridge)


8

July/August, 2008

Recognizing Excellence: A Look at 2007 SCI Hall of Fame Inductees Chris Canales: Grassroots Organizer By Santina Muha, Staff Writer

C

hris Canales, recent SCI Hall of Fame nominee, has accomplished more within the first two decades of his life than many people accomplish in an entire lifetime. Recently inducted in the grassroots organizer category, Canales continues to provide support emotionally, financially and otherwise for young athletes who are injured in football related activities. Injured at the C5/C6 level during a game of football on Nov. 2, 2001 while making a tackle, Canales still loves the game, but has a new found knowledge of the possible consequences of the sport. Shortly after his injury, Canales witnessed a similar injury at a local game and his mission became clear. He created the grassroots organization Grid-

CHRIS CANALES TRIVIA What do you like to do on your down time? Play the Nintendo Wii and listen to music What are you the biggest fan of? Texas A&M sports What do you miss most about your childhood? Just about everything, but mainly my old friends What’s your favorite: Movie- “The Sandlot” Song/Artist- “Have You Seen Her?” by the Chi-Lites TV Show- “Still Standing” Holiday- Thanksgiving Season- autumn Food- steak & potatoes Animal- dogs Actor/Actress- Will Smith/Sandra Bullock Sport- football Sports team or athlete- Texas A&M What are three things you couldn’t live without? Family, music and football Who are your personal heroes? My mom and dad iron Heroes Spinal Cord Injury Foundation. Its purpose is to help those injured playing football and their families to live high quality lives.

Canales says, “When I was injured we found no help for injured athletes and a shortfall of support from the football community, so my dad and I are trying to change that.” During Canales’ induction speech at the 2007 SCI Hall of Fame gala in Washington, D.C., he stated that he would like to share this honor with his father, Eddie Chris Canales (seated center) with father Eddie (left) and one of his inspiraCanales. Chris says, tions, Rudy Ruettiger (right) from the Rudy Foundation in Anaheim, Calif. “Being inducted into the SCI Hall of Fame was one of the greatest honors in my life. I efited from the inaugural Beyond the Lights shared it with my dad because without his Celebrity Golf Classic, where “Friday Night love, help and support it would have never Lights” cast members hosted and performers been possible.” He says he is proud to be the such as Tim McGraw and Lonestar enteryoungest person to be inducted thus far. tained guests. After meeting actor/director Peter Berg, As Canales moves forward, he would like Canales became involved with the movie to see his foundation grow exponentially. “Friday Night Lights” and was later involved “The impact of the work we are doing will in the television version, working with the be realized when Gridiron Heroes goes nawriters. The first few episodes of the story, tionwide!” wherein one of the main characters is injured in a high school football game, were For more information on Chris Canales and Gridiron Heroes, visit www.gridironheroes.org. based in part on Canales’ story. Most recently, the Gridiron Heroes ben-

Volunteer Opportunities at NSCIA Are you looking for a way to make a difference? Volunteering with the National Spinal Cord Injury Association (NSCIA) offers the opportunity to do just that – and in a way that fits your levels of experience and availability. Since we have a national Chapter network, and so much of our work is done via phone and email, we can work with any motivated volunteer no matter what they live. Volunteer support is vital to our organization’s ability to accomplish as much as we do with limited staff and budget. You can make a difference by…

If you would like more information or to apply to serve as an NSCIA volunteer, please contact Eric Larson at 847-997-2109 or elarson@spinalcord.org.

…building resources. The Development Committee helps NSCIA identify and connect with sources of funding and foster the development of the Association’s financial well being. …raising voices. The Communications Committee works with the VP of Communications and NSCIA staff to facilitate communications both within and outside the Association. …growing our membership. The Membership Committee works with the VP of Membership to promote the growth and development of the Association’s membership and helps to build and communicate the value of membership in NSCIA.

…supporting special projects. Our Resource Center also uses volunteers on a project basis, depending on current activity, ranging from research to phone/email contact to planning or staffing events. …working with local Chapters. Most of our national network of Chapters also use volunteers and we would be happy to connect you with a Chapter in your area. Committees typically meet monthly via teleconference, and time commitment varies but can be average little as 2 - 5 hours per month depending on your committee, or as high as you want, limited only by your passion for progress.


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July/August, 2008

legal Your Rights Under the Fair Housing Amendments Act By Len Zandrow, Esq. NSCIA General Counsel

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orty years ago, Congress enacted the Fair Housing Act of 1968, landmark legislation that outlawed for the first time discrimination in private and public housing. Twenty years later, Congress passed the Fair Housing Amendments Act of 1988 (FHAA), which expanded the scope of the statute to include persons with disabilities.

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Among those protected by the FHAA are individuals with a so-called “handicapping condition.” The statute incorporates

who’s who at nscia? Santina Muha, Communications Associate By Cheryl Stowe, SCILife Correspondent

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SCIA communications associate Santina Muha lives life with purpose. As SCILife’s ubiquitous writer, her passion and energy grab the reader and allow us to feel the driving force behind her work: “I want to be an important part of the movement to show people without disabilities, and those living with disabilities who haven’t figured it out yet, that life goes on and can still be the best life ever.” Muha began work with NSCIA immediately after graduating from Rutgers University with a Bachelor of Arts in communication and sociology. “I found NSCIA at the Abilities Expo during my last year of college and volunteered to write freelance for SCILife. After my second article was published, Eric (Larson) asked if I’d like to take on the position of communication associate. I figured it would be a perfect fit.” In addition to SCILife, Muha’s articles can be found in the NSCIA e-news and on spinalcord.org. “I also work with staff and vendors to coordinate overall design, content development and production for all NSCIA publications, advertising, public relations and promotional activities. And I run the association’s MySpace page located at www.myspace.com/nscia.” Beyond her work with the NSCIA, Muha writes freelance for various maga-

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the definition of disability found in Section 504 of the Rehabilitation Act of 1973, which includes persons with a physical impairment “that substantially limits one or more major life activity.” The FHAA has always been applied readily to individuals with spinal cord injury or disease. The statute covers all types of public or private housing, whether or not federal financial assistance is received. The premises involved need only be designed or used as a residence. The FHAA also applies to all kinds of activities, including the sale, rental and financing of dwellings, as well as zoning practices, new construction design and advertising. Under the FHAA, housing providers may not misrepresent the availability of or refuse to sell or rent a dwelling unit to a qualified individual with a disability. They also may not impose special terms or conditions or otherwise treat persons with disabilities differently, nor may they advertise a property in such a way as to deny access to persons with disabilities.” The FHAA requires housing providers to allow structural modifications to their premises. For example, landlords must permit disabled tenants to make reasonable access-related modifications to their private living space, as well as to common use spaces. Such modifications, however, are at the tenant’s expense and the tenant may be

required at the end of the tenancy to reasonably restore the premises to the condition that existed before the modification. Housing providers may also be required by the FHAA to modify their customary policies and practices in order to reasonably accommodate persons with disabilities. For example, in two leading federal cases in 1995 and 1997, the courts ruled that a landlord and a condominium association were each required to waive their waiting list and master deed requirements, which had restricted and prioritized the availability of parking spaces, in order to accommodate the immediate parking needs of disabled residents. The FHAA also provides that any new multifamily housing built for occupancy after March 13, 1991 must be designed so as to allow access by persons with disabilities. The law applies to dwellings with four or more units and requires accessible common areas, doors wide enough for wheelchairs, kitchens and bathrooms that allow a wheelchair user to maneuver and other adaptable features. In three key cases in Maryland, Nevada and Illinois between 1999 and 2002, plaintiffs with SCI/D successfully sued developers who had wrongfully constructed entrances with steps only, built narrow doorways within units, failed to provide reinforcement for grab bars in bathrooms and placed environmental and lighting controls at inaccessible heights.

Enforcement Procedures

zines, conducts on-camera interviews for EndeavorFreedom.tv and Xable.com, and does some modeling for catalogs and other commercial promotions. The position of communications associate could not be more complementary to her skills and experiences. “They say ‘write what you know’ and I know about SCI.” Muha was in a car accident on March 9, 1989, just before her sixth birthday. As a result, she has a spinal cord injury at T10/11. “Santina brings great talent, perspective and enthusiasm to her position as communications associate,” says Eric Larson, NSCIA chief operating officer and Muha’s supervisor. “But she also brings those things to NSCIA as a whole – along with a great smile and big dreams.” “My family has always been very supportive and my mom, who was 25 years old and a single mom at the time of my

injury, did a great job of teaching me to balance independence and asking for help,” says Muha.” Her mother, Rose Wilhelm, says, “She was very young at the time of her injury, so everything that was happening was always explained to her on an age appropriate level and she was always surrounded by family and friends offering comfort. She was a good patient for the most part, but she absolutely hated having some of the medical procedures that were necessary, as well as the many sounds of the hospital. To this day certain sounds still remind her of the beeping of the IV poles.” Family is very important to Muha. She lived with her grandparents while growing up on the Jersey shore and she has four siblings. “My brother Anthony, my mother and Nonna (grandmother in Italian) live

up the road from me, so I usually see one of them at least once a day.” While growing up she dealt with some feelings of being left out because she was not able to do everything her friends could, but Muha quickly learned to adapt and was a cheerleader in high school and social chair of her sorority in college. “I found high school to be a little difficult at times,” she says, “but once I got to college I was thrilled with my life.” In fact, at age 25, she has already had some amazing experiences. “I was the only contestant in a wheelchair in the Miss New Jersey USA Pageant. I was the first contestant to use a wheelchair on the show ‘Who Wants to be a Millionaire?’ I won $16,000.” She has also flown a glider plane and recently drove a racecar and learned

SANTINA MUHA TRIVIA • • • • • • • •

Speaks Italian, which she learned from her grandparents, who spoke little English Father works for the American Embassy in Israel Happiest when in front of a camera, or when being pampered Likes saying “hi” to complete strangers on the street Interned at Comedy Central television network in New York for three months Loves meeting celebrities and seems to run into them constantly “I try to make someone’s day or commit a random act of kindness at least once a day.” “If I could get a ‘get out of paraplegia free’ card, I would use it to walk on the beach.”

Visit www.SantinaMuha.com to find out more about Santina Muha and see videos, etc.

NSCIA Communication Association Santina Muha (right) with (left to right) her grandmother, brother and mother.

FHAA-related complaints must be filed, in the first instance, with the nearest local office of the U. S. Department of Housing and Urban Development (HUD). Complaints must be filed within one year of the objectionable practice. HUD, or in some cases what may be considered a substantially equivalent state or local agency, must investigate the FHAA complaint within 100 days to determine if it is supported by reasonable cause. If so, a voluntary conciliation may be attempted. If conciliation fails for whatever reason, a formal charge may be issued. The complainant then has the option of either removing the case to a federal court or bringing the claim before an administrative law judge. The process and remedies are different. Generally, litigation in the federal district court will take longer, but the plaintiff has the potential to recover punitive damages. In contrast, the administrative remedy with HUD will typically proceed more quickly, but only civil penalties are recoverable. Legal advice may be warranted when making this strategic choice between forums. For more information about filing a complaint under the FHAA, contact: Office of Program Compliance and Disability Rights, U. S. Department of Housing and Urban Development, www.hud.gov/offices/fheo, 800-669-9777.

Continued on page 15


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resource center

New Injury (SCI/D) in Midcareer and Older Adults By Resource Center Staff

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spinal cord injury or disease is a lifechanging event whether you are midcareer or an older adult. The resulting lifestyle changes will alter the way you experience your independence and self-control. For many, an SCI/D may lead to depression, a redefining of roles in your family, as well as parenting and employment challenges. This was the case for Bill Fertig, NSCIA resource center manager, after his T7 injury at age 45. “I felt I was on a good track in my life with a good job and rewarding family life. I thought I had most of the BIG questions answered when all the goals and questions suddenly changed. All of these BIG questions need to be re-addressed when you sustain a spinal cord injury.” Fortunately, much in the way of SCI/D information, services and resources is available and NSCIA’s Resource Center (RC) information specialists can help you find it. The most immediate need is finding a good rehabilitation program and/or facility. Model systems of care and systems that are accredited by the Commission on Accreditation of Rehabilitation Facilities are listed on the NSCIA website’s state pages (http://www. spinalcord.org/chapters). The NSCIA facility selection guidelines fact sheet will provide information to help you or your family make the most appropriate choice for SCI rehabilitation. RC staff can furnish extensive new injury information by e-mail and/or mail out a new injury packet. Staff can connect you with NSCIA partner CaringBridge (in the members’ area of www.spinalcord.org). CaringBridge is an online family support system that is particularly appropriate in the aftermath of SCI/D. If fundraising is necessary to pay for needs not covered by health insurance and entitlements, the National Transplant Assistance Fund & Catastrophic Injury Program provides a means for families to raise funds for unmet needs (see www.spinalcord.org/resources).

John McCain... Continued from page 3

of service-connected injuries. In November, we must get out the vote for the candidate we believe will support policy that addresses our needs. We are not just any voting bloc. We are the largest minority in the country whose votes can sway an election. I am proud to give my vote to Senator McCain based on his overwhelming record of support for people with disabilities. I have only mentioned a small part of his disability record in this article, but I am happy to have the opportunity to address why I support Senator McCain as my choice for president. I hope you will stand

If you are already a Medicare beneficiary when injured, it is important to understand your Medicare rehabilitation benefits. Detailed information to help you successfully navigate through this insurance maze is available at www.spinalcord.org under the news and info menu. Returning to a prior job or exploring new employment options can be facilitated by your state vocational rehabilitation department (see state pages at www.spinalcord.org). A return to driving a vehicle can improve your employment prospects as well as restore your personal freedom. You can receive assistance with hand controls or instruction through vocational rehabilitation or by contacting NSCIA information specialists for additional information. “This was one of the most important milestones in my recovery,” says Fertig. “Once I returned to driving, I was reinvigorated and felt useful again. It also opened the door to my return to employment one year after injury.” Participation in an SCI support group can be a vital component in your recovery and in rearranging your life. The state resources pages on the NSCIA website provide numerous support group opportunities. If you live far from the closest established group, you may have an increased need to join the NSCIA member forums (spinalcord.org/chapters/ ) or begin a new group in your area. RC staff can assist you in either of these processes. Sustaining an SCI/D as an older adult may require special management if you already have diabetes, hypertension, arthritis, cardiovascular diseases or other age-related health problems. At the same time, as people are living much longer with SCI/D, you will experience the natural course of aging that includes physical, psychological and social health problems. With SCI/D, you will be at earlier risk for bone loss, loss of strength and other factors affecting your recovery and lifestyle. Falls are one of the leading causes of SCIs among older adults. The Center for Disease Control has developed strategies to increase the prevention of falls among older people (www.cdc.gov/ncipc/duip/spotlite/falls.htm). RC information specialists will connect you with SCI/D information, services and resources that may also be important for your spouse or other caregiver. The goal of NSCIA is to help you maximize your quality of life and enable you to be as independent as possible. Contact the NSCIA resource center at: info@ spinalcord.org or (800) 962-9629 Monday through Friday, 8:30 a.m. to 5 p.m. with me and cast your ballot for Senator John McCain. Remember that when you go to the polls, Senator McCain introduced a bill that would amend the Voting Accessibility for the Elderly and Handicapped Act to ensure that no individual be denied the right to vote in a federal election on the basis of being disabled and every voter has the right to vote independently in a federal election. Actions speak louder than words and Senator McCain has an advocacy record that makes the difference for Americans with disabilities. Donna M. Jones is national coordinator of the Americans with Disabilities for McCain Coalition.

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Santina Muha... Continued from page 13

to water ski and kayak. “I’m trying to be more adventurous!” she says. And she is just getting started. Muha’s lifetime goals are to “have my own talk show, host Saturday Night Live, own property on both coasts, buy someone a house, positively change someone’s life forever, be on the cover of a popular magazine (or two or three or 100), go to Italy… and I will definitely have earned $1 million in 10 years!” “Growing up, Santina was a happy, cheerful and friendly child,” says Wilhelm. “She had and still has a quick wit and great sense of humor. She was not shy at all and loved getting lots of attention. Today, she remains smart, funny and a lot of fun to be around. She is still not shy about getting attention!” To others living with SCI/D, Muha says, “Step out of your comfort zone at least once a year. We all need a little excitement in our lives.” Both personally and professionally, Muha demonstrates a new paradigm for disability. “I want to show people on a daily basis, in mass quantities, that the in-

ability to walk does not mean the inability to be smart, or beautiful, or successful, or funny, or mean, or nice, or whatever personal stereotype a person may attach to disability.” She says her mother taught her a valuable childhood lesson about living with a disability. “Be your own advocate. YOU know what is best for YOU. Don’t ever be shy to ask for assistance or ask for something to be done a different way, especially if you are uncomfortable with a given situation.” Muha recognizes that this sometimes includes making allowances for those things we cannot immediately change. “The world is not 100 percent accessible yet --not even close-- and we all have different abilities. So in some instances you just need to be willing and know how to adapt.” Living with an SCI, Muha says, “has taught me that I’m a survivor and a thriver and if I want to do something I’ll find a way to do it. The disability has little to do with it. Sometimes it works in my favor and sometimes it works against me. There are plenty of things in my life I wouldn’t have had the chance to do if I hadn’t been paralyzed, and I’m sure a few things I would have done if I were still able to walk. That’s life. Nobody wins the ‘If only I wasn’t in a wheelchair…’ game.”

Missing Copies of SCILife? Become a member of our on-line community and get instant access to all previous SCILife issues. visit www.spinalcord.org


16

July/August, 2008

in motion

Wheelchair Basketball is Still Going Strong By Domonic Corradin

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heelchair basketball was started in the late 1940s on an Air Force base when some of the injured soldiers were getting anxious and wanted to do something active again. In the beginning, they formed two teams to start competing and now there are over 200. As for me, I have only been playing for about 10 years on and off with spots on the Phoenix Suns and the Grand Rapids Junior Pacers and Pacers. Basketball gave me the team sport, social fun and the athletics that I had as a soccer goalie before I was injured. In the beginning, the technology was crude and the players struggled on the court. With chairs that you now would find in a grocery store, the only place to go was up. Now we ram and jam all over the court with lightweight, alloy frame chairs specifically designed for the sport we play and

custom built for each individual. Check out the Quickie All Court (www.sunrisemedical.com), Top End Terminator BB (www. invacare.com) or the Lasher Sport BT-Baller (www.lashersport.com). In organized wheelchair basketball, division I plays using primarily the NBA rules and regulations, whereas divisions II and III apply NCAA collegiate rules. The basic rule of thumb to qualify to play in wheelchair basketball is having a physical disability that makes it impossible to be competitive in regular ball. People with everything from degenerative joint issues to high level paralysis and limb amputations play the wheelchair version of the sport. Before any player can set his or her wheels on the court, he or she has to be classified by their physical ability level. After meeting with a classifier, you are classed as a one, two or three and are given as many points. The five players on the court at any given time cannot add up to more than 12 points. As a chest-level paraplegic, I am class 1. There are teams set up all over the world and national teams compete globally in the Paralympics every two years. Men and women, boys and girls can play on youth or adult teams, respectively. Not only is playing basketball a great way to get exercise, it is a great way to meet people and make friends. To locate a local team or find more information on the National Wheelchair Basketball Association, go to www.nwba.org. If anyone has a question for me, feel free to e-mail me at Domonic@eXtremeAbilities. com or stop by my website www.eXtremeAbilities.com.

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Dominic Corradin practicing wheelchair basketball.


NSCIA Member Services SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401 Phone (713) 526-6900

Toll free (800) 962-9629 Fax (713) 526-7787 e-mail: membership@spinalcord.org web site: www.spinalcord.org

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To find out more about the SCI Hall of Fame or to see a list of previous inductees or this year’s nominees, visit www. July/August, 2008 17 spinalcord.org.

representatives, researchers, individuals, and families – all of whom share a commitment to maximizing the quality of life for people with spinal cord injury and disease.

Who’s Who in American Law 1985 through present

Attorney Ronald R. Gilbert

Advocate forthe theSpinal Spinal Cord Injured Attorney for Injured Put nation's top personal injury specialist to workbeen for you.injured Ron Gilbert has(1) helped if the you, a friend or loved one, has by: A over 200 spinal cord injured persons in 35 states collect the compensation they deserve. product or use of a product (e.g. helmet, vehicle even if it is a If you suffered a spinal cord injury, maybe he can help you.

one vehicle accident and you are the driver, ladder, trampoline

more), (2) from On successful someone property (e.g. falls, gunshot, Compensation andelse’s responsible litigation can open doors to a betrecreation events more), (3) a medical ter life. With the or highathletic cost of disability related expenses, youDuring need to know all your opprocedure as a result of a prescription drug — YOU MAY BE tions. It takes anor experienced, committed, caring specialist to make the system work for ENTITLED TO ECONOMIC RECOVERY. you. Put the nation’s top personal injury specialist to work for you. Ron Gilbert has helped over 300 spinal cord injured in 35 legislation states collect thespinal compensation they deserve. If ° persons Helped sponsor benefiting cord injured persons. you have suffered a spinal cord injury, he will try to help you. Among Ron Gilbert's many prevention and advocacy efforts, he has:

°

Founded the Foundation for Aquatic Injury Prevention and the Foundation for Compensation from successful and responsible litigation Spinal Cord Injury Prevention, Care and Cure (www.fscip.org). can open doors to a better life.

To get help, started, call call Ron Gilbert today fortoday a free review your legal options. proFor Ron Gilbert for aof free review ofHe'll your vide legal help as well as assistance in planning, networking and coping with the physlegal options. He’ll provide legal help as well as assistance in ical, emotional and and legal challenges face. planning, coping withyou the physical, emotional and other

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1-800-342-0330 1-800-342-0330 Ronald R. Gilbert, PC Cases Handled Personally Cases Handled Ronald R. Gilbert, P.C. www.fscip.org / ron@fscip.org Nationwide www.fscip.org / ron@fscip.org Personally Nationwide www.aquaticisf.org rrgpc@aol.com If you have suffered a spinal cord injury, call today to receive a free legal consultation If you have suffered a spinal cord injury, call Injury today to receive a and complementary membership in the National Spinal Cord Association, includfree legal consultation and complimentary copy ofandSpinal ing the publication Options, a complementary copy of Spinal Network a handNetwork a handbook legal book on legaland options for survivors ofon spinal cordoptions injuries. for victims of spinal cord injuries.

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° Some Servedof as Secretary and a member of the Board ofto Directors the spinal cord Ron Gilbert’s many efforts help of the National Spinal Cord Injury Foundation. community include: ° • Received appreciation forbenefitting Prevention work from thecord injured Helpeda certificate sponsorof legislation spinal Michigan PVA. persons.

Served Secretary and member of the Board ° • Served as aas member of the SCI/TBI Advisory Committee - Michi- of Directors of the Spinal gan and National Vice Chairman 1988 Cord - 1996.Injury Foundation. • Received a Certificate of Appreciation for Prevention work

Time may be working against you. The rule of law called the Statute from Michigan PVA. scilife19:SCILIFE of Limitations puts a limit on the time in which you may file an injury Time may working against you. ruleseriously of law called the claim. This time be can be as short one-year. If you haveAbeen injured andof haven't talked with a lawyer, time mayin bewhich runningyou out. may file an Statute Limitations puts a time limit Don't wait. It won't cost time you a cent talk with us. And may be the If you have injury claim. This can tobe as short as itone year. most important telephone call you'll evermay make.be running out. Don’t wait. been seriously injured, time

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SPINAL CORD INJURIES FinancingManaging The Future: Disability Managing Re° Financing The•Future: Disability-Related Expenses lated Expenses Liability, Compensation And Your Rights • ° Prevention: Helping Others Avoid Accidents • Legal Options Legal Action ° Liability, Compensation And Through Your Rights • Improving Safety 12/30/2007 21:50 Page 6 • Finding And Choosing An Attorney ° Legal Options • Getting Help: A Guide To Organizations ° Improving Safety Action Details, GoLegal To Ron’s Website — • ForThrough www.fscip.org For Legal Options And ° Finding and Choosing An Attorney Professional Help. ° Getting Help: A Guide To Organizations September/October 2007

6

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.

REAL PEOPLE REAL CHALLENGES REAL SOLUTIONS

EXP

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Join U Injury

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SCIA and an nual Sp Fame gala a evening of Kennedy C Washington complishm those comm Once a performanc lowed by th a dessert r Restaurant. writer JP W lennium journalist, L Hosted of Fame m NBC corre this black tended by ment officia including t and Huma cation, Ho and the So ministratio representati families – a to maximiz with spinal


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July/August, 2008

NSCIA Chapter & Support Group network ARIZONA CHAPTER Arizona United SCIA 901 E. Willetta, Ste. 2306, Phoenix, Arizona, 85006 Phone: (602) 239-5929 Ext. 444 Fax: (602) 239-6268 Contact: Paul Mortenson Website: www.azspinal.org E-mail: info@azspinal.org Support Groups East Valley Support Group (COMPASS) Phone: (602) 241-1006 Contact: Pauline Staples E-mail: plstaples@msn.com Flagstaff Support Group Phone: (928) 527-8567 Contact: Al White Grupo de apoyo en Español Gentiva Rehab Without Walls, 7227 N 16th St #107, Phoenix, Arizona Phone: (602) 943-1012 Contact: Diane Prescott Support Group Phone: (623) 209-0311 Contact: Gary Hershey SCI Women Support Group Banner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307 Contact: Jill Greenlee, CTRS CALIFORNIA CHAPTER WYNGS, NSCIA 7900 Nelson Rd., Panorama City, California, 91402 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano Website: www.wyngs.org E-mail: wyngs4sci@msn.com Support Groups Southern California SCI Support Group Casa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, California, 91769 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano, WYNGS Email: wyngs4sci@msn.com Leon S. Peter’s Rehabilitation Center P.O. Box 1232, Fresno, California, 93715 Phone: (559) 459-6000 Ext. 5783 Contact: Ray Greenberg E-mail: rgreenberg@communitymedical.org CONNECTICUT CHAPTER Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, Connecticut, 6492 Phone: (203) 284-1045 Contact: Jeff Dion Website: www.sciact.org E-mail: nscia@sciact.org DISTRICT OF COLUMBIA CHAPTER SCI Network of Metropolitan Washington, NSCIA Plaza West 9, 51 Monroe Street, Rockville, Maryland, 20850 Phone: (301) 424-8335 Fax: (301) 424-8858 Contact: Jesse Parker E-mail: jessep@iben.com Contact: David Burds Website: www.spinalcordinjury.net E-mail: davidb@ecnv.org FLORIDA Support Groups Peer Support Contact 313 Spider Lily Ln, Naples, Florida, 34119 Phone: (239) 353-5894 Contact: Mindy Idaspe E-mail: scidconsultant@hotmail.com

Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, Florida, 32308 Phone: (850) 656-4800 Contact: JoAnna Rodgers-Green Florida Rehab. and Sports Medicine 5165 Adanson St., Orlando, Florida, 32804 Phone: (407) 823-2967 Contact: Robin Kohn Email: rkohn@mail.ucf.edu Phone : (407) 623-1070 Contact: Carl Miller HEALTHSOUTH - Support Group 90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866 Contact Vicki Yasova Tampa General Hospital SCI Support Group 2 Columbia Dr., Tampa, Florida, 33601 Phone: (800) 995-8544 GEORGIA Support Groups Columbus SCI Support Group Phone: (703) 322-9039 Contact: Ramona Cost E-mail: rvcost@mchsi.com Central Central GA Rehab Hospital 3351 Northside Dr., Macon, Georgia, 31210 Phone: (800) 491-3550 Ext. 643 Fax: (478) 477-6223 Contact: Kathy Combs ILLINOIS CHAPTER Spinal Cord Injury Association of Illinois 1032 South LaGrange Road, LaGrange, Illinois, 60525 Phone: (708) 352-6223 Fax: (708) 352-9065 Contact: Mercedes Rauen Website: www.sci-illinois.org E-mail: SCIInjury@aol.com INDIANA Support Group Calumet Region Support Group 2109 Cleveland St., Gary, Indiana, 46406 Phone: (219) 944-8037 Contact: Rita Renae Jackson Email: rjackson@ci.gary.in.us Northwest Indiana SCI Support Group 1052 Joliet Rd, Valparaiso, Indiana, 46385 Phone: (219) 531-0055 Contact: Joe White E-mail: heyjoewhite@comcast.net IOWA CHAPTER Spinal Cord Injury Association of Iowa 3936 NW Urbandale Dr, Urbandale, Iowa 50322 Contact: Tim Ascherl Email: tima@advancedrehabtech.com Phone: (515) 270-1522 Contact: Angie Plager Phone: (515) 554-9759 Email: SCIAofIowa@hotmail.com KENTUCKY CHAPTER Derby City Area Chapter, NSCIA 305 W. Broadway, Louisville, Kentuky, 40202 Phone: (502) 589-6620 Contact: David Allgood, President Website: www.derbycityspinalcord.org E-mail: dallgood@calky.org Support Group Friends with Spinal Cord Injuries 3785 hwy 95, Benton, Kentucky, 42025 Phone: (270) 205-5675 Contact: Anndrea Coffman E-mail: whelygurl@yahoo.com

Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, Florida, 32901 Phone: (321) 984-4600 Contact: Ellen Lyons-Olski E-mail: ellen.lyons-olski@healthsouth.com

MARYLAND Support Group Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, Maryland, 21207 Phone: (410) 448-6307 Contact: Jenny Johnson Website: www.kernan.org/kernan/

Pinecrest Rehabilitation Hospital Spinal Cord Education Group 5360 Linton Blvd., Del Ray, Florida, 33484 Phone: (561) 495-3048 Contact: Mary Kaye Email: Mary.kaye@tenethealth.com Phone: (561) 495-3636 Contact: Christine Grant

MASSACHUSETTS CHAPTER Greater Boston Chapter, NSCIA New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 01801 Phone: (781) 933-8666

Fax: (781) 933-0043 Contact: Kevin Gibson Website: www.sciboston.com E-mail: sciboston@aol.com SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, Massachusetts Phone: (617) 414-5000 Website: www.sciboston.com/support.htm Spaulding Support/Discussion Group 125 Nashua Street, Boston, Massachusetts Phone: (857) 222-5123 Contact: Betsy Pillsbury Website: sciboston.com/support.htm Whittier Westborough Support Group 150 Flanders Road, Westborough, Massachusetts Phone: (508) 871-2000 Ext. x2165 Contact: Deb Website: sciboston.com/support.htm MISSISSIPPI Support Group Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, Mississippi, 39532 Phone: (601) 969-4009 Contact: Michelle Bahret Website: www.lifeofms.com Email: mbahret@yahoo.com MISSOURI Support Group Southwest Center for Independent Living 2864 S. Nettleson Ave., Springfield, Missouri, 65807 Phone: (417) 886-1188 Contact: Marion Trimble Website: www.swcil.org E-mail: mtrimble@swcil.org NEVADA CHAPTER Nevada Chapter, NSCIA 4708 E. Rochelle Avenue, Las Vegas, Nevada, 89121 Phone: (702) 988-1158 Fax: (702) 951-9637 Contact: Brian “Moose” Hasselman Website: www.nscia-nv.org E-mail: b.moose@cox.net NEW HAMPSHIRE CHAPTER New Hampshire Chapter, NSCIA 54 Wentworth Ave Londonberry, NH. 03053 Phone: (603) 216-3920 Fax: (603) 432-1549 Contact: Joan Nelson Website: www.nhspinal.org NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Phone: (585) 275-6097 Contact: Karen Genett E-mail: rochesternscia@yahoo.com Phone: (585) 275-6347 Contact: Amy Scaramuzzino E-mail: ascaramu@frontiernet.net New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine Attn: James Cesario 1 Gustave L. Levy Place, Box 1240 New York, New York, 10029 Phone: (212) 659-9369 Fax: (212) 348-5901 Contact: James Cesario or John Moynihan Website: www.nycspinal.org E-mail: NYCspinal@NYCspinal.org Support GroupS SCI Network of Central New York ARISE, 635 James Street, Syracuse, New York, 13203 Phone: (315) 464-2337 Fax: (315) 464-2305 Contact: Tammy Bartoszek E-mail: bartoszt@upstate.edu Phone: (315) 247-0927 Contact: Maria Froio E-mail: scin4cny@yahoo.com Long Island Spinal Cord Injury Phone: (631) 221-9255 Contact: Ron Quartararo Website: www.testaverdefund.org E-mail: info@testaverdefund.org NORTH CAROLINA CHAPTER NCSCIA 3701 Wake Forest Rd., Raleigh, North Carolina, 27609

Phone: (919) 350-4172 Contact: Deborah Myers E-mail: dmyers8@triad.rr.com Contact: Karen Vasquez E-mail: kvasquez@wakemed.org OHIO CHAPTERS Northwest Ohio Chapter, NSCIA 2654 Green Valley Dr, Toledo, Ohio, 43614 Phone: (419) 389-6678 Contact: Debbie Burke E-mail: TiggerLady99@aol.com Phone: (419) 455-0748 Contact: Jim Beckley Website: www.nwonscia.org E-mail: jbeckley@woh.rr.com Northeast Ohio Chapter, NSCIA 2500 MetroHealth Drive Cleveland, Ohio 44109-1998 Phone: (440) 813-2783 Fax: (440) 293-6503 Contact: Adam Sweeney E-mail: asweeney@leapinfo.org Phone: 440.442.5550 Contact: Jeff Schiemann E-mail: jjscpajd@aol.com Website: www.metrohealth.org/NORSCIS Support Group Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, Ohio, 44484 Phone: (330) 841-3856 Contact: Rebecca Lebron E-mail: rlebron@forumhealth.org Phone: (330) 889-2158 Contact: Rick Ackerman E-mail: bird196@aol.com PENNSYLVANIA Support GroupS Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, Pennsylvania, 16602 Phone: (800) 873-4220 Greater Pittsburgh Rehabilitation Hospital 2380 McGinley Rd., Monroeville, Pennsylvania, 15146 Phone: (800) 695-4774 Contact: Kristy Nauman E-mail: kristy.nauman@healthsouth.com Delaware Valley SCIA 2610 Belmont Ave., Philadelphia, Pennsylvania, 19131 Phone: (215) 477-4946 Contact: Bruce McElrath Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, Pennsylvania, 19102 Phone: (215) 587-3174 Fax: (215) 568-3736 Contact: Marie Protesto Website: www.mageepeers.org Rehabilitation Hospital of York 1850 Normandie Dr., York, Pennsylvania, 17404 Phone: (800) 752-9675 Ext. 720 Phone: (717) 767-6941 Contact: Tammy Derk E-mail: tammy.derk@healthsouth.com SOUTH CAROLINA CHAPTER South Carolina Chapter Phone: (866) 445-5509 Fax: (803) 376-4156 Website: www.scscia.org SUPPORT GROUPS Anderson Area SCI Support Group Phone: (864) 224-9787 Contact: Kim Wilson Email: kwilson9787@charter.net Charleston Area SCI Support Group Phone: (843) 863-1165 Contact: Ruth Jones Phone: (843) 792-2605 Contact: Richard Aust Chester Area SCI Support Group Purity Presbyterian Church on 135 Wylie Street, Chester, South Carolina, Phone: (803) 482-4389 Contact: Lee Carter Conway SCI Support Group Phone: (843) 679-9932 Contact: Ronnie McFadden Contact: Ellen Leftwich Email: leftwich@sccoast.net Florence, SC Area Support Group Phone: (843) 679-9932 Contact: Ronnie McFadden Email: ronnielmc@yahoo.com Greenville SCI Support Group

McCallister Square 223 S. Pleasantburg Drive, South Carolina, Phone: (864) 609-0026 Contact: Rick Huntress Email: RHuntr36@aol.com Midlands Peer Support Network Group 500 Taylor St, Columbia, South Carolina, 29201 Phone: (866) 445-5509 Contact: Debra Matney Email: debscia@bellsouth.net Phone: (803) 252-2198 Contact: Roy Bartell Email: royscia@bellsouth.net Orangeburg, SC Area Support Group Phone: (803) 829-2043 Contact: Rebecca Felder Email: oburgscisupport@peoplepc.com Spartanburg, SC Area Support Group St. Matthews Episcopal Church 101 St. Matthews Lane, Spartanburg, South Carolina, 29301 Phone: (864) 595-1947 Contact: Dot Colson Email: DColson@Dennys.com Sumter Area SCI Support Group Phone: (803) 775-7416 Contact: Roy Bartell Email: rbar957938@aol.com York/Rock Hill Area Support Group Piedmont Medical Center, Classroom 3, 222 S. Herlong Ave., Rock Hill, South Carolina, 29732 Phone: (803) 366-5659 Contact: Bob Alders Email: bobcatawba@aol.com TEXAS CHAPTER Rio Grande Chapter Highlands Regional Rehab. Hospital 1395 George Dieter, El Paso, Texas, 79936 Phone: (915) 532-3004 Contact: Sukie Armendariz Contact: Ron Prieto E-mail: riograndenscia@aol.com VIRGINIA CHAPTER Old Dominion Chapter P.O. Box 8326 (1st Class mail only), Virginia, Phone: (804) 726-4990 Fax: (888) 752-7857 Email: info@odcnscia.org Website: www.odcnscia.org Contact: Steve Fetrow Email: steve.fetrow@odcnscia.org WASHINGTON Support Group SCI Forum University of Washington Medical Center Cafeteria Conference Room B/C 1959 NE Pacific St Seattle, Washington 98195 Phone: (206) 685-3999 Contact: Cynthia Salzman E-mail: Csalzman@u.washington.edu WEST VIRGINIA Support Group West Virginia Mountaineer Support Group P.O. Box 1004, Institute, West Virginia, 25112 Phone: (304) 766-4751(W) Fax: (304) 766-4849 Contact: Steve Hill E-mail: steveh@mail.drs.state.wv.us WISCONSIN CHAPTER NSCIA Southeastern Wisconsin 1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215 Phone: (414) 384-4022 Fax: (414) 384-7820 Contact: NSCIA-SEW Office E-mail: office@nsciasew.org Contact: President E-mail: president@nsciasew.org Website: www.nsciasew.org

For a current listing of Chapters and Support Groups, visit www.spinalcord.org, or call 800.962.9629. If you cannot find a chapter or support group in your area, why not start your own? Contact the National Office for assistance on our Helpline: 800.962.9629.


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SCILife, Vol. 5, No. 4