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January/February, 2008

January/February, 2008

www.spinalcord.org

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Vol. 5, No. 1

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

NSCIA Celebrates 60 Years Maximizing Opportunity for People with SCI/D! By SCILife Staff

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n July 10, 2008, the National Spinal Cord Injury Association (NSCIA) will celebrate its 60th birthday. The organization that is now NSCIA was formed in 1948 as the National Paraplegia Foundation (NPF) by members of the Paralyzed Veterans of America (PVA), which was only two years old at the time. Even at that early time in its own history, PVA had already recognized the need for a counterpart to serve civilians with spinal cord injuries, and to increase focus on sci/d research. A lot has happened since those early days and 60 years later, the association is stronger than ever. With more than 21,500 members and 40 chapter and support group affiliates, NSCIA today reaches people liv-

Southern California Emergency Preparedness for Citizens with Disabilities Still Needs Improvement By Santina Muha, SCILife Staff Writer

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s wildfires swept through southern California at the end of 2007, citizens with disabilities were forced to evacuate their accessible homes. Each day meant a new challenge. In the aftermath of Hurricane Katrina, disability rights activists were outraged by horror stories of neglect and ill-preparation that left people with disabilities in dire straits. In 2007, SCILife investigated a county in Florida whose citizens with disabilities were desperate to find accessible

ing with SCI/D across the country, and at times, around the world. A clear and strong voice for its constituents in the development of public policy and in a wide range of collaborative partnerships, NSCIA is a leader in the U.S. disability community and a loyal partner in a common mission to advance the rights and opportunities of the 650 million people with disabilities worldwide. “This anniversary actually snuck up on us,” said executive director and CEO, Marcie Roth. “Our focus is on today and the future, and that doesn’t leave much time to think about the past. But we do understand that the work we do today builds on the deep commitment, passion and leadership of many others over the past 60 years.” Rather than attempt to chronicle in detail the long and winding road from 1948 to today, this article highlights several themes shelters. Did those who planned and handled the California evacuations do a better job? Reactions have been mixed. Some believe lessons were learned from past mistakes and improvements were made. Others believe the state continues to make the same mistakes and emergency preparedness for citizens with disabilities is nowhere near where it is expected to be in 2008. Through her role as co-chair of the Consortium for Citizens with Disabilities Emergency Task Force, and her expertise in addressing the disaster related needs of people with disabilities NSCIA CEO, Marcie Roth was contacted throughout the evacuation and asked to assist with connecting people with sheltering, suppllies, housing, and a myriad of other needs and those charged with addressing those needs. Thankfully, several notable national disability and disaster experts are Californians, and Californians have had many opportunities to exercise their response capabilities. Even so, there was confusion between elected officials and emergency management personnel over who was responsible for the sheltering needs of people with disabilities and many of the problems were with addressing needs that should have been adequately prepared for and exercised. Roth remains concerned that the level of confusion would be much higher in almost every other state.

that have, from the beginning, been, and remain, fundamental to the organization.

Our Mission

The original Articles of Incorporation for NPF included the following as the organization’s “purpose”: •

To form a national foundation for the benefit of persons regardless of race, color or creed, who have suffered injuries or diseases of the spinal cord. To aid and assist in carrying on educational programs and in procuring benefits for such persons by acquainting the

Ruthee Goldkorn, owner of No Barriers Disabled Access Consulting Services and executive board member of Californians for Disability Rights, was at the Orange Show Fairgrounds evacuation center in San Bernardino. She says evacuees with disabilities had to go five days without an accessible shower. Julie Williams, a systems change advocate for the Rolling Start, an organiza-

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public on a national scale with the needs and problems of paraplegics. To establish a foundation for research in the several fields connected with injuries and diseases of the spinal cord. To advocate and foster and maintain complete and effective reconditioning programs for paraplegics including a thorough physical reconditioning program, physiotherapy, competent walking instructions, adequate guidance (both vocational and educational), academic vocational education (both in hospitals and educational institutions), Continued on page 6

tion which empowers people living with disabilities to lead independent lives, was also there. She remembers, “Necessities did start to arrive, but some not until the last day of the evacuation. It had been going on for days, but it wasn’t until Richard Devylder came that the connection with the Red Cross was made for us.” Continued on page 3

Bathrooms at the Orange Show Fairgrounds evacuation center in San Bernardino, Calif. were not accessible for wheelchair users. (Photo Courtesy of The Sun; Photographer: Therese Tran).


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January/February, 2008


January/February, 2008

from the editor

Hang On Tight! 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 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 Pamela Ballard, MD Paul Mortensen Christine N. Sang, M.D., M.P.H John Fioriti Carmen DiGiovine Don Dawkins Veronica Gonnello Gretchen Fox

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 Our voice phone is 713.526.69.00 fax: 713.526.7787 Email us at info@spinalcord.org or go to www.spinalcord.org.

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

By Mike Ervin, SCILife Senior Editor

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ell it looks like 2008 is going to be a wild ride here in the SCILife shop so hang on tight. Two big things are happening. First, as you can see from our lead story, this is NSCIA’s 60th anniversary. As Marcie Roth, executive director and CEO, says in our lead story, the whole thing sort of snuck up on us. That’s what happens when you’re focused on keeping up with all that’s happening today and moving toward the future. But, fortunately, NSCIA has a rich history and throughout the year we will focus on a different angle of our past in every issue of SCILife. As our lead story also notes, NSCIA, from the very beginning, was dedicated to quality of life issues for people with SCI/D. This was quite an enlightened idea at the time. Mere survival was a lofty goal for people with significant disabilities back then. NSCIA leaders have also been out front on issues long before they were fashionable, such as sexuality. More on

Southern California... Continued from page 1

Devylder, who was born without arms or legs, advises the California Office of Emergency Services and the Governor’s Office of Homeland Security on how disaster preparedness, response and recovery impact people with disabilities. “My role is the point person. I’m a nag and ask them a lot of questions.” Devylder arrived at the fairgrounds on the fifth day of the evacuation. Says Williams, “There was nobody in there representing the disabled population until that day.” Devylder was able to orchestrate the installation of an accessible shower within 24 hours. “We were able to get two unions from the area to get people to volunteer to build a ramp and within 24 hours an ADA ramp was built to the toilet/shower combo,” Devylder says. “The ramp was ADA compliant, but the toilet/shower wasn’t. So the vendor was told to find an accessible shower and he did.” Inaccessible cots were another huge issue for the fairgrounds. Devylder was able to get one woman a hospital bed within 24 hours, but many others were relocated to motels with the help of Rolling Start and other volunteers. Williams remembers, “I worked with a quad who was six feet nine inches tall and he couldn’t transfer to the cot. We worked to get him into a motel, and then struggled to assist him in transferring

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that in our next edition. But it’s really fascinating for us to look back at where we were and where we are, not just as an organization but a movement. In the final analysis, it’s a tale that inspires hope and renewed commitment. We also just received word here in our newsroom that apparently there is going to be an American presidential election later this year. So we’ll be hot on our toes keeping up with that too. In recent editions, we’ve outlined what the hoards of declared candidates have said, or not said, about disability issues. As soon as the field is whittled down to the final major nominees, we’ll explore what to expect from each should they be elected. This kind of information will have to come from publications like SCILife because none of the remaining contenders are talking about issues of greatest importance to our community, such as long term care reform, in larger public forums or mainstream press. The candidates all have, however, participated in varying degrees in disability forums and they will be asked to respond again. We’ll let you know what they have to say. We’ll also talk about the major issues they’ll have to address if they want to earn our votes. Check out Cheryl Stowe’s great story in this edition about the outrageous, infuriating waiting periods people applying for Social Security disability payments have had to endure. Also see our front page story about emergency preparedness for people with disabilities and how it still leaves a lot to be desired. We’ll be doing some new stuff too. The members of NSCIA’s SCI Hall of Fame are all interesting, accomplished people. So we’ll take a closer look at those that were most recently inducted in 2007. This

time we feature Michael Collins and Kim Anderson. Also, I believe it was Winston Churchill who said, “If it ain’t broke, don’t fix it.” Or maybe it was Yogi Berra. Whoever it was, we subscribe to the wisdom in that philosophy. So we’ll be doing more of the kind of SCILife coverage that we think works well. We’ll be doing more in-depth interviews with people with disabilities who have a unique perspective. In our March/April edition, staff writer Santina Muha interviews Allan Rucker, author of “The Best Seat in the House: How I Woke up One Tuesday and was Paralyzed for Life.” It may not sound like it from the title but it’s a very funny book. We’ll also continue our In Motion section, where we cover adapted sports and recreation. We approach this through first person accounts from those who enjoy these activities most because they can tell us best the powerful role sports, recreation or just doing other fun things with friends can play in restoring and reaffirming the spirits of people with disabilities, especially those who are recently disabled. We’ll also expand the scope of this section to include pursuits that aren’t athletic, such as cooking. And of course we’ll continue to feature all of our columnists. We’re proud to be a part of the disability media. One of the reasons we reach anniversaries like these is because we have developed communication vehicles that inform, motivate, agitate, celebrate, incite, inspire, build consensus and chart a course. Through our media we find each other, hook arms and move forward. Before we know it, more than a half century has past, and a lot of amazing things have happened. Onward.

into a vehicle because there was no accessible public transportation. When he was at the motel, I worked with in-home supportive services to bring him meals, assist him, etc. And we checked on him ourselves.” Goldkorn volunteered three days at the fairgrounds. She says, “There was a complete breakdown of communication within the Red Cross and that led to problems in evacuating citizens with disabilities.” According to Devylder, “Some Red Cross employees were administering medication while others were claiming they were not allowed to handle medication. We need consistency.” Devylder also says coordinating accessible public transit was a big problem. “Some rural areas don’t have bus services, or they don’t operate on Sundays. For those areas, how can the surrounding areas assist them?” All acknowledge that at least minor improvements were made since southern California’s wildfire emergency in 2004. Devylder says he heard no complaints of service animals being turned away. And most of all, he says, “There were no special needs shelters. People with disabilities were able to integrate into general population shelters. It’s clear that they’re not going to be as comfortable as they are at home. Some people went to motels, but many stayed at the Fairgrounds. People with disabilities have the right to be in general population shelters. It is the responsibility of whoever is in charge of opening those shelters to accept and assist citizens with disabilities. We’ve been trying to give tools and resources to local governments to learn.”

Goldkorn adds, “In 2004, people with disabilities were being turned away. This was not happening in 2007. This time they were let in, but the next step is to establish a working relationship with the disability community and the agents working with the disability community.” Goldkorn is still angered by the slow pace of progress. “The devil is in the details. There is no detail. There is no attention paid to the soup to nuts of these evacuation plans. Who are the local independent living center heads? Who from the regional center can come out? These are simple issues. It gets complicated when they’re not addressed before the emergency.” Williams says, “It’s so important to have people there from independent living centers. A lot of people need one-on-one assistance to identify their needs. And many times they need an advocate for them to be a little aggressive.” All also acknowledge that there’s a lot of work to be done to prepare for the next disaster. Williams says, “It was a big effort by our whole staff to try to find people who needed us and identify their needs. We’re working very hard to get involved with as many committees as we can to make sure they take action and prepare better for the next emergency.” But Devylder says that in the realm that matters most, the emergency response turned out all right, at least this time. “The greatest success is that we didn’t hear of people with disabilities losing their lives due to this disaster.”


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January/February, 2008

from the executive director

A Time to Celebrate, but Not to Rest By Marcie Roth, Executive Director and CEO, NSCIA

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t’s been 60 years since NSCIA was formed and I just celebrated my 6th anniversary as the CEO. In the coming months, we will be bringing you stories about NSCIA over the years. We will also give you lots of opportunity to see how we’ve grown. Over the past 6 years, the organization has expanded from 4000 members to almost 22,000 members, our staff has grown from one fill time and four part time staff to a team of over 17 staff and consul-

tants and we have increased from serving 20 -30 people each day to serving over 150 people with new injuries, families, service providers and other stake holders daily. Our publications, the newspaper SCI Life that you are reading right now and our monthly electronic newsletter eNews are distributed to each of our members and are also found in hospitals and community organizations serving people with disabilities across the globe, and our online resource center at www.spinalcord.org receives almost 2000 unique visitors each day. Our network of 40 chapters and support groups continues to grow, and we anticipate adding three new chapters soon. All three are well underway and others are in earlier stages of formation. One area of change I am especially proud to report about is the significant growth in communication between all of the organizations serving people with SCI/D. NSCIA’s SCI Summit 2006 was the launch pad for the Spinal Cord Leaders Council, which now has members from 26 SCI organizations. To learn more about the SCLC, go to: http://www.spinalcordleaders.org The SCI Hall of Fame, first developed in 2005 now has 39 inductees and plans for our 2008 Gala are underway with some very exciting additions planned, and the next Summit on SCI is also going to include some important changes.

Much has changed in 60 years and even over the past 6 years, there have been many changes, but I continually ask myself what has changed in the daily lives of our constituents? While I can honestly say a lot has changed in 60 years, I am not sure the past 6 look much different. Whether its improvements in health care, research findings that translate into real change for real people, increases in employment rates, expanded housing options, increased access to transportation or even accurate portrayals of the lives of people with disabilities in the media, it is disturbing that not much has changed. Even in one of the biggest news stories each day, the upcoming elections, talk about disability issues remains absent when the candidates talk about their health care, antipoverty, employment, civil rights and other platforms. Even talk about long term care and nursing home reform refers only to seniors, when the truth is that nursing homes are populated by people with disabilities, not seniors! No one goes to a nursing home because they are old. The only ticket into a nursing home is disability related functional needs that an individual’s community has been unable or unwilling to meet. Many disability leaders have been very active in assisting campaigns to develop policies that address our most pressing issues and you can find much of this on our website, with links to candidate websites where

information has been provided to us.. But, despite all efforts to remind the candidates and the party leaders about the incredibly attractive potential voting bloc of 40 million voters with disabilities, the candidates rarely talk about their plans to address our issues. While there may be many reasons for this, the solutions remain quite simple.. As the father of the Americans with Disabilities Act, Justin Dart used to say, “Get into politics as if your life depended on it, because it does.” I have chosen to get involved and I hope you will too. A lot is at stake in November. If we want to see real change in the lives of people with disabilities in the coming years, it requires that systems, services and strategies undergo significant change. In the words of Mahatma Gandhi; “Be the change you wish to see”. Volunteer for a campaign at the local, state or national level, help people with disabilities to register and make sure they have a way to get to the polls in November and make sure those polling places are accessible. Join us in demanding that candidates talk about us and include our issues as priorities. Please help NSCIA to celebrate our 60th birthday, and get involved with us as we continue to build bridges. There is an important role for each person reading this, and I challenge you to contact us so we can help you find the right fit for you.

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 Michigan Model Spinal Cord Injury Care System Ann Arbor, MI (734) 763-0971

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

Northeast Ohio Regional Spinal Cord Injury System Cleveland, OH (216) 778-8781

National Capital Spinal Cord Injury Model System National Rehabilitation Hospital |MedStar Research Institute|. Washington, DC (202) 877-1425 (202) 877-1196

Georgia Regional Spinal Cord Injury Care System-Shepherd Center, Inc. Atlanta, GA (404) 350-7591

University of Pittsburgh Model Center on Spinal Cord Injury Pittsburgh, PA (412) 586-6941 www.upmc-sci.org

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

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

Cardinal Hill Rehabilitation Hospital Lexington, KY 859.254.5701

Brooks Rehabilitation Hospital-University of North Florida Jacksonville, FL (904) 858-7600

Moses Cone Inpatient Rehabilitation Center Greensboro, NC 336.832.7000

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

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

Organizational Members of NSCIA

Florida SCI Resource Center Tampa, FL (800) 995-8544

Push to Walk Bloomingdale, NJ (973) 291-6370


January/February, 2008

from the president

To Your (Our) Health! By Patrick Maher, President, NSCIA Board of Directors

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aving recently had the opportunity to enjoy the holiday season with loved ones, eat, drink and be merry more than we know is “healthy”, and at least ponder our resolve for the new year, all of us at NSCIA have returned to our mission full speed. After closing out 2007 with a great series of events and dynamic meetings in Washington, D.C., we are poised to do our part, along with our members and strategic partners, to make 2008 the healthiest year yet for anyone living with spinal cord injury or disease. And while we know we are on a journey that is far from complete, it is worth noting the progress we made in the past year, and celebrating every step toward fulfillment of our mission. During this past year we have taken many such steps. NSCIA members selected a robust class of new inductees to the SCI Hall of Fame™ and celebrated their accomplishments at a highly visible and successful event at the Kennedy Center in Washington, D.C. We helped shepherd the diverse group of spinal cord leaders that coalesced at our 2006 SCI Summit through its first year of

activity, culminating in its initial face to face meeting in Washington, D.C. and to its formalization as the Spinal Cord Leaders Council (SCLC). Our staff continued to develop and strengthen internal systems and processes that will serve us well in the future and our board of directors is continuing to drive its efforts at committee level in fulfillment of NSCIA’s strategic plan. Our chapter and support group network continues to be a vital part of NSCIA, and we continued to support that network through consistent contact as well as by conducting a strategic chapter development workshop last fall. We are currently in active efforts to create additional chapters or support groups in six states! We strengthened strategic relationships with other organizations and agencies while cresting the 21,000 mark in our membership! In an effort to strengthen service and outreach to that membership we’ve improved access to our web site, www.spinalcord.org, and launched our online store. NSCIA is poised as never before to impact the well-being of our members in this, our 60th anniversary year. Our staff is robust, beyond capable, and passionate in their work to carry our efforts forward. Our board is growing and energized – though we always welcome new committee members who might want to support a specific effort and even consider prospective board membership. Our strategic partners are bolstering our efforts while we are, hopefully, bringing value to their respective missions as well. And, most importantly, our numbers as reflected in membership continue to grow and strengthen our capacity to influence decision-makers, both private and public sector, to support the highest possible quality of life for persons living with spinal cord injury or disease. Here’s to reaching that goal well before the next 60 years have passed.

Visit Member’s Section for More To ensure you receive SCILife, SCI e-news and other member communications, log on through our newly upgraded Members Section at www.spinalcord.org/members • • • •

update your profile and contact info access SCILife and SCI e-news archives read and contribute to special member features learn about member discounts and services

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January/February, 2008

NSCIA Celebrates 60... Continued from page 1

psychotherapy, psychological orientation and readjustment to family, friends and society, and occupational therapy (both functional and diversional) and to carry on treatment and hospitalization to affect foresaid purposes.

These initial purposes were extremely broad, even far reaching in scope. Reading them today, one cannot help but notice subtleties like the lack of reference to quadriplegics (who frankly at the time weren’t given much chance of survival, let alone independent life) or the use of the phrase “suffered injuries” as opposed to our more likely use today of a term like “living with and surviving injuries.” Yet it is telling even at a time when the entire concept of “living with spinal cord injury” was still new to most, our founders understood and outlined in specific terms so much that remains so relevant today. Drafted in 2002 and reaffirmed in 2006, NSCIA’s current mission is to “enable people with spinal cord injury and disease (SCI/D) to achieve their highest level of independence, health, and quality of life by providing resources, services, and peer support.” Different words, supported by tactics and technology undreamed of 60 years ago – but clearly still in keeping with the original intent of our founders.

Grassroots Activity

In the early years of the organization, PVA chapters throughout the country played a significant role in supporting and participating in the organization and in reaching new members. Some of the notable PVA members who took active roles in the foundation’s formation were Gil Moss, Alfred Gore, Marcus Orr, Bernard Shufelt, and Robert Moss. Robert Moss was to be a dominant figure at the beginning and then 20 years later when he re-ignited his interest in the association and played a very important role until the time of his death in the mid-1980s. Over time, NSCIA formed affiliations with its own network of chapters and support groups around the nation. Chapters were actively involved throughout the country in raising funds to promote local research; in beginning the process of educating communities about issues related to SCI and the need to reach out to people who were spinal cord injured; in providing newly injured persons and their families with the information they needed to survive; and in providing peer support to help facilitate adjustment to life with the new disability.” Today, NSCIA is more committed than ever to its national network of affiliates, providing support in such forms as a recent day-long chapter development workshop and a series of regional meetings planned for later this year, according to Debbie Myers, NSCIA’s vice president for chapters.

Partnerships with the Medical and Scientific Communities

In the early years of the organization there was a strong alliance with the medical profession. A medical advisory committee was quickly formed. This committee included many of the nation’s leading physicians who

were doing research, as well as those promoting improved care and treatment for people with SCI. One of the key figures serving on the medical advisory committee from its beginning and until his death in 1969 was Dr. L. W. Freeman, a scientist at Indiana University whose commitment to finding a cure for SCI was legendary. Today, NSCIA continues to value the work being done in the medical and scientific communities and has recently formed a new medical and scientific advisory committee. The organization’s SCI resource center includes a RN on staff and the board of directors currently includes two physicians, one who is an expert on pain, another who is a leading physiatrist, an SCI nurse, physical and occupational therapists, a rehabilitation engineer and a psychologist.

Care AND Cure

From time to time NSCIA leaders have had discussions and even disagreements about what the focus of the organization should be. There have been those people who say the organization should do nothing but promote research and then there have been those who said someone else should promote research and the organization should deal exclusively with quality of life issues. In fact, NSCIA was formed to do both and throughout its history, the organization has consistently led on both. Research is enormously important and will lead to both a cure for paralysis and methods for preventing paralysis at or immediately after injury. Every person who has been involved, or is currently involved with NSCIA believes that and is committed to that. We are also committed to a broad research agenda that goes far beyond prevention and cure. NSCIA has always been active in research that improves the quality of life for our constituents. This includes bowel and bladder function, respiratory and skin health, preventing secondary conditions and complications like cardiovascular disease and spasticity, and it also includes research that expands our ability to address housing, transportation, employment, fertility, mental health, wheelchair design, assistive technology and a myriad of other important aspects of maximizing quality of life after SCI/D. What’s most important is that during the last 60 years, tens of thousands of people with spinal cord injuries or disorders have had the support to adjust to the impact of their injuries, to receive the care and treatment necessary to allow them to maximize their health and function, and have had services and resources available to them in their communities that did enhance their quality of life. These things were made possible by NSCIA through its chapters, through its public education initiatives and by providing the necessary resource materials. NSCIA brought forth the most up-to-date information, at any point in time, which would assist persons with a SCI/D, family members and allied health professionals to be up-to-date and well connected. This is no small accomplishment for an organization that remains modest in terms of staff and funding.

Education and Communication

From its earliest days through the 1960s, NPF held its annual meeting in conjunction with the conventions of the PVA. Typically, there was a half-day annual meeting for

NPF and members of both groups joined together for a banquet held at the end of the convention. In 1970, NPF’s board of directors decided that it was time to take another step in the foundation’s efforts to promote and provide education and information about spinal cord injury by conducting their own annual convention. A group of board members and chapter leaders from the Midwest convened to begin planning the first NPF convention which was held in Chicago in 1971. After that, annual education conferences served the organization and the community well for many years, but as technology, travel and the communications habits of our constituents changed, and new alternatives became available, NSCIA’s approach has also evolved. There is little need for people to travel great distances to obtain information readily available via Internet these days. The NSCIA SCI resource center serves more than 1,500 inquiries per day between its online resource listings, and responses to telephone, fax and email inquiries. NSCIA’s flagship publication SCILife has gone through multiple iterations including a number of years as a full color quarterly magazine. Today’s newspaper format and bi-monthly publication combines with a monthly electronic newsletter, SCI e-news, to reach the association’s growing membership with important news and information on a timely basis. Over the past decade, NSCIA has become a leader in using the Internet and electronic communications to conduct all of its business. Since 2001, the entire NSCIA organization operates via “virtual office,” keeping overhead costs low, maximizing technology and most importantly maximizing our ability to employ the best people regardless of disability or geographic location. Today’s NSCIA members reflect this as well, being as likely to meet each other in cyberspace, through one of our forums, or www.myspace.com/nscia as they might be to meet in person. Of course, face-to-face interaction continues to have its place. For example, NSCIA’s ground-breaking SCI Summit in 2005, followed by a second summit in 2006, brought key leaders from around the

nation together to assess the “state of sci” and set a shared agenda for how the many stakeholders in our community could work together on this agenda. And, with early plans shaping up for our next summit, we know that history will be made once again!

People

As with any successful venture, NSCIA has from day one been about the people. In the early days, PVA members like Gil Moss, Gore, Orr, Shufelt and Robert Moss played key roles in defining who the organization would become. Others like James Smittkamp, Professor Timothy Nugent and Don Olson, Ph.D. played pivotal roles during the association’s early history. So important are the people in our community and their contributions, that in 2005, NSCIA created the SCI Hall of Fame as the first formal program to recognize excellence and honor individuals and organizations that have made significant contributions to quality of life and advancements toward a better future for all individuals with SCI/D. Participation has grown each year with more than 160 nominees nationwide for induction in 14 categories in 2007. The stories behind the current leadership are as colorful as NSCIA’s history. As this year progresses, SCILife will cover some of these stories in more detail as we take a look at the state of living with SCI/D during the past six decades, the role played by NSCIA throughout our history and where we see our role and our impact in the future.

Credits

When NSCIA celebrated its 50th anniversary in 1998, Ann Ford (then associate director of NSCIA) authored the History of the National Spinal Cord Injury Association 1948-1998, originally published in 1998 in SCILife. This article draws heavily on the factual information Ann collected for that article and we thank her greatly for her hard work to preserve our history. We invite you to share your stories and memories of NSCIA’s history. Please send your stories and photos to smuha@spinalcord.org or SCILife Senior Editor, National Spinal Cord Injury Association, One Church Street, Ste. 600, Rockville, MD 20850.

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


January/February, 2008

SSDI/SSI Appeals Backlogs Reach Crisis Proportions By Cheryl Stowe, SCILife Correspondent

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even months after applying for Social Security disability benefits, I received The Letter. The words “Notice of Disapproved Claim” stared at me in bold letters from the top of the form. In disbelief I read, “Although you do suffer from a spinal cord injury due to a motor vehicle accident, the evidence shows your condition has not resulted in disabling weakness, paralysis, or loss of control of your limbs.” I became a C4/C5 quadriplegic on March 29, 2005. I have considerable paralysis on one side of my body and, at the time I received this letter, had great difficulty performing tasks of daily living. These inabilities and deficiencies are clearly defined and documented in the weighty medical records forwarded to the Social Security Administration several times at their multiple requests. I knew they received each set of information, because I followed up meticulously with my doctors in an attempt to be as thorough as possible. My emotions escalated from confusion to incredulity and, ultimately, fury. Had the SSA scheduled just one appointment for me with any of the “doctors” who reviewed my case, they would have found their claim of my physical wellness to be utterly untrue. They would have seen the uncontrolled spasticity in my right hand, seen my left hand’s inability to grasp objects, seen my other functional limitations. The problem, of course, was not my insufficient paralysis, but that first-time claim denial seems to be standard practice for SSA. In fact, in 2005, according to government statistics, 63 out of 100 disability claims were initially deemed invalid. Remarkably, only 22 of those 63, or 35 percent, were appealed for reconsideration. And, during reconsideration, 19 of the 22 were denied again. As the process drags on, fewer and fewer people choose to appeal. It’s a numbers game and the government is winning. To literally add insult to injury, the average appeals process takes more than 500 days, according to a Dec. 10, 2007 article in The New York Times. In fact, if a person must carry the disability review process from start to finish – from initial review to a hearing with a District Court judge – it takes a whopping 1,760 days, according to the government’s own statistics. That’s almost five years! SSA is drastically underfunded, and faces office closings and employee layoffs at an astonishing rate. These layoffs, coupled with anticipated SSA employee retirement, mean only a one to eight employee replacement ratio for field office employees, those who directly handle disability applicant cases. In 2006 there were 2,134,088 new applications for SSDI benefits. By October

2007, there were already 1,844,898 new claims for the year. The agency has a new plan to increase the number of appeals judges by 150 from the existing 1,025 in an attempt to reduce the appeals backlog, but currently the plan is not financially realistic. President Bush has proposed a $9.6 billion budget for the SSA for the 2008 fiscal year, but the addition of these 150 new appeals judges will require $100 million more. Ultimately, I was very fortunate. My husband is and has been the primary breadwinner for our family. We had the means and resources to survive the full 15 months it took to begin receiving the SSDI money to which I was entitled. But Linda Fullerton knows all too well the damaging effect this appeals backlog can have on a person’s life. “After almost dying and continuing to battle several incurable diseases, I had to wipe out all my life savings and pension money due to the enormous wait for my SSDI claim to be processed,” she says. “I will never be able to recover from the financial, physical, and emotional devastation that was caused.” On Nov. 3, 1996, Fullerton bumped her head while getting out of her car. This freak accident, coupled with a series of misdiagnoses, led to the serious illnesses and related brain surgery that left Fullerton permanently disabled and in need of disability benefits. When she applied for SSDI, however, she says she “discovered that the Social Security disability claims process is currently structured to suck the life out of its applicants in hope that they give up or die trying.” Fullerton found herself not being able to afford health insurance, medicine and household necessities while her health continued to worsen. SSA can determine that an individual has “dire needs”, a determination that may speed the appeals process. Unfortunately, SSA assigns this determination only when foreclosure, eviction, or utility shut-off are imminent. Linda wrote her elected officials – all of them, including the president – to plead her case. Few responded, and the ones who did offered little help. “It was totally appalling and unacceptable to me that never once did they say that they would do anything to try and correct the flaws in the system.” Fullerton was eventually granted her claim. But the ordeal has had serious lasting effects. “Even though I won my case, I continually deal with enormous stress and face the looming threat of bankruptcy and homelessness due to the cost of my healthcare and basic living expenses. Even though I am now receiving my monthly SSDI checks, they are no where near enough to live on for the rest of my life..” Now, helping others navigate the often confusing and decidedly difficult maze of SSDI/SSI appeals process has become Fullerton’s crusade. Her Social Security Disability Coalition was founded in January 2003 and is a national grassroots organization offering free information and support, with a focus on reform. The SSDC website (www. groups.msn.com/SocialSecurityDisabilityCoalition) is a clearinghouse of information for those battling a disability claim denial, from codes and terms definitions, to online forms, to Social Security statistical data. “I wanted to use what I learned from my

horrible experience with the SSDI program to help those still struggling to get their benefits by sharing information, and trying to get legislative reform of this important benefits program,” she says. Fullerton has written legislation called the Fullerton-Edwards Social Security Reform Act, which calls for, among other things, the removal of wait times for eligibility, more federal funding for SSA and easier determination criteria, which should all speed the time it takes to process a disability claim. In the meantime, Fullerton’s goal is to empower people with disabilities to become their own best advocates for benefits

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by taking as active a role as possible in the claims process. Among her most important tips: communicate as much as possible with SSA, get copies of all examiners’ notes and medical records for your own files, be sure to mention all physical and mental problems you have and be sure your doctors are supportive of you and your disability claim. Fullerton is quick to point out that disability does not discriminate, and can happen in the blink of an eye. “Studies have shown that most Americans have about two weeks of financial resources to live on. How long could YOU survive with absolutely no income if you got sick or hurt and could no longer work?”

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January/February, 2008

Recognizing Excellence: A Look at the Newest SCI Hall of Fame Inductees

Michael Collins: Government Executive

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program aimed at children and teens. Of her induction, Anderson says, “It was a great honor and has made all the struggles of the past 19 years worthwhile.” In her acceptance speech, Anderson said, “You should all know there are a lot of people out there doing amazing work all for people with spinal paralysis.”

ike Collins joined the National Council on Disability as its executive director in June 2007. He previously served as the first executive director of the California State Independent Living Council, where he served for more than 10 years. Raised as part of a large family in a small town in the desert farming country of eastern Washington, Collins was injured in 1988 at the C5/6/7 level during a skiing accident. Right from the start Collins became involved, joining his NSCIA local chapter during rehabilitation. He was immediately elected vice chair. Since then, he has written articles for the Spinal Network Resource Book, New Mobility and other publications dealing with disability and SCI issues. He has also served on many disability-related advisory committees. Of his induction, Collins says, “I was very honored and humbled, since it was by a vote of my peers and friends, instead of some outside organization. I also know many people who are government executives who are deserving of this award and who will be nominated in the future. It’s rewarding to know that I am considered to be on the same plane as they are.” “It is extremely gratifying to have the opportunity to make a difference in the lives of so many people every day,” Collins says. “Both the State Independent Living Council, where I worked when I was nominated for this award, and the National Council on Disability, are very proactive in trying to make lives better for people with any type of disability. I have thoroughly enjoyed being the executive director of both of those agencies because of the impact of what they do.” Collins says, “Even when the work piles up there is going to be some type of gratification from the completion of a quality work product or an opportunity to interact with others for the benefit of the community of people with disabilities. In thinking back, there hasn’t been a day in the past few years when I’ve ever thought twice about my desire to go to work.”

day-to-day life to play, no matter what their disability is. It’s really for everyone, as we have ways for people with varying degrees of disability to enjoy playing. We even have players who control and drive their wheelchair with their head or chin. A majority of our players are male, but that does not mean it’s a game that is meant only for men. The female players are just as into it as the males and can even be more ag-

gressive. I hope to see more females enjoying the sport as we continue moving forward. I will be starting my 12th PowerHockey season in May. I’ve been playing since the first PowerHockey teams were formed. I have spinal muscular atrophy and every summer at MDA camp we would play floor hockey, so that was my first exposure to playing any kind of hockey. PowerHockey basically formed from MDA campers who loved playing floor hockey and decided to get together outside of camp to play, then made an official league. PowerHockey has both physical and social impact. It gives you a chance to interact with others who share similar abilities. But really, it’s a good opportunity to get out and do something, and you get to know a lot of really great people and make great friends with others who just want to play a sport and be an athlete like you do. One may not think driving your chair around playing PowerHockey is a work-out, but it is! Sometimes after 45 minutes of driving your wheelchair up-and-down the court, you are really tired, especially if you’re in an intense game. More physically able players use their arms a lot to try and reach for the ball and hit the ball. You can work up a sweat and even get an adrenalin rush. PowerHockey is a really exciting sport.

By Santina Muha, SCILife Staff Writer Kim Anderson: Research in Basic Science

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r. Kim Anderson is an assistant adjunct professor in the Department of Neurological Surgery at the Reeve-Irvine Research Center. Her research focuses on translational investigation and bridging the gap between basic science and clinical science, in relation to SCI. Anderson was injured at the C6 level at age 17 in a car crash. She graduated cum laude from Texas A&M University and earned a Ph.D. in Biomedical Sciences from the University of New Mexico in 2000. Here, she received the Khatali Award for Outstanding Senior Graduate Student. Anderson has accomplished many great things, but she says she is most proud of conquering SCI rather than allowing her SCI to conquer her. She has lived her life with no regrets. “I grew up everywhere. I was a military brat,” Anderson says. Now settled in southern California, a typical day for Anderson is long and extremely full. Her canine companion of 11 years was always a big part of her day, but sadly, he recently passed away. Anderson is currently working on an SCI and sexual dysfunction survey. “Seeing the opportunity to make changes in the research field that will truly benefit people living with SCI/D,” says Anderson, “makes me passionate about my work.” She has also established an Orange County chapter of the Think First Foundation, which is a brain and spinal cord trauma prevention

Kim Anderson skydiving, her favorite activity.

Kim Anderson Trivia What do you like to do on your down time? Read, listen to music, skydive, travel What do you miss most about your childhood? The simpleness of life What are three things you couldn’t live without? My Roho cushion, iGlide chair and my adapted vehicle. Who is your personal hero? My father. What’s your favorite: • Movie? The Good, the Bad, and the Ugly • Song? Fade to Black • TV Show? Lost • Game? Risk • Holiday? Memorial Day • Season? Summer • Food? Mexican • Animal? Shark • Actor/Actress? Clint Eastwood

in motion PowerHockey is Rough and Tumble Fun By Jen Onsum, Veteran PowerHockey Player

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owerHockey is played on a gym floor with a whiffle ball instead of a puck and players use either a plastic hockey stick or a composite stick. Players sometimes have a dowel going through the blade of their stick as a way to help propel and control the ball. Some players with less strength attach their stick to their wheelchair. PowerHockey follows pretty much the same rules as ice hockey, with some variations, such as we play offsides at the center line instead of the blue lines. Rules may also slightly vary in each state/province. PowerHockey players are classified in three levels, based on their strength and abilities. We welcome and encourage any individual who uses a power wheelchair in

Michael Collins escorting his daughter, Barbie, down the aisle on her wedding day.

Michael Collins Trivia What do you miss most about your childhood? Being young. Of what accomplishment are you most proud? The family I’ve helped create - particularly my two daughters and three grandsons. Do you have any regrets? It seems like most of the time when I meet someone new they become a friend at one level or another. I guess I regret not taking more time to meet more such friends because I was too busy in the past. What are three things you couldn’t live without? My power wheelchair, a vehicle I can drive and the ability to get out of bed on a daily basis. Who are your personal heroes? Those pioneers who went ahead of me to create the accessibility and the civil rights that we all count on today. They are not all in wheelchairs, but people like Justin Dart, Lex Frieden, John Kemp, Barry Corbet, Bob Kafka, Sam Maddox, John Lancaster and so many more have made a real difference in my life before I ever got to know them as friends. Photos Credit: Coral Moore.

People who see it for the first time usually don’t expect it to be as exciting and intense as it is. Most are impressed by it. I love the fact that I can be an athlete and that I can be as competitive as my friends without disabilities. More information can be found at http://powerhockey.com


January/February, 2008

9

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ThinkFirst: Using Your Mind to Protect Your Body

which scientists and physicians currently cannot cure. Programs utilize curriculum and multimedia presentations given by injury prevention specialists and VIP speakers. The injury prevention specialists explain the various causes of injury, how and why they occur and how they can be prevented through the actions we take. They also use models of the brain and spinal cord to explain the function of these systems and how injuries

By Debby Gerhardstein

thoughts, loss of personality . . . and loss of friends.

Programs, Tools and Curriculum

ThinkFirst staff, with the assistance or consultation of the program advisory committee and outside experts, develops the injury prevention programs and tools for ThinkFirst chapter use. These are available to chapters, along with chapter training. ThinkFirst encourages chapters to survey picture courtesy ThinkFirst Iowa.

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raumatic injuries are a leading cause of death and disability in the United States: the number one cause of death for ages one through 44. Each year there are more than 160,000 deaths and 29 million nonfatal injuries due to traumatic injuries caused by motor vehicle crashes, violence, falls, sports and other causes (CDC 2007). While brain and spinal cord injuries (SCI) can lead to permanent disabilities, other injuries such as bone fractures, lacerations, back injuries and sprains also account for high numbers of emergency room visits and lost work time. The ThinkFirst National Injury Prevention Foundation is in its 22nd year providing injury prevention programs to schools and community groups. Founded by the American Association of Neurological Surgeons and the Congress of Neurological Surgeons, ThinkFirst‘s mission is to be a leader in injury prevention through education, research and public policy by offering theory-based and evidence-based educational programs to schools and community groups. As injury is the leading cause of death for children, teens and young adults, ThinkFirst’s goal is to help students make safe choices to prevent injury. Through a network of more than 200 chapters, ThinkFirst incorporates evidence-based curriculum and dynamic presentations in their programs. VIP speakers – Voices for Injury Prevention—share their personal stories of how a brain, spinal cord or other traumatic injury affected their life forever. Together with injury prevention specialists, they help students understand that injuries can happen to anyone, but are largely preventable if they “think first” to protect themselves. Topics focus on safe and sober driving, safety belt use, helmet use, sports and diving safety, prevention of falls and violence prevention. Students learn about the permanence of the most serious injuries, those to the brain and spinal cord, through literacy-based curriculum, engaging presentations, and by hearing from our VIP speakers. Program studies demonstrate evidence of increased knowledge and increased safe behavior choices among program participants.

The Theory behind ThinkFirst

ThinkFirst educational programs are based on the Health Belief Model, and are congruent with Healthy People 2010. The ThinkFirst Foundation has developed and implemented programs that educate students on the ramifications of the most serious injuries, those to the brain and spinal cord. Students learn that we are not merely talking about a scrape on the knee or a bump on the head. We are talking about injuries that cause permanent damage to vital parts of the body, causing disabling brain injuries or paralysis: permanent disabilities

11

the classroom teacher to utilize. ThinkFirst for Youth is also curriculum based, providing teachers in grades 4-8 with innovative safety lessons and activities to excite adolescents. Science lessons include anatomy of the brain and spinal cord, while games and exercises help students learn to confidently make safe choices on their own and with their peers. ThinkFirst for Teens is a fast-paced, dynamic presentation for health classes, driver education classes or assemblies. Speakers who have sustained a brain or spinal cord injury share with students how an unsafe choice can change a person’s life forever. Through personal testimony, students learn the importance of making safe choices. This program is offered free of charge to high schools, middle schools and colleges.

Chapter Structure

The ability to reduce the incidence of injuries is dependent on wide-spread programming. The successful national reach of ThinkFirst is due largely to the organized chapter structure and the relationship the Foundation has with the chapters. Trained chapters operate independently through hospitals, universities and medical offices, using ThinkFirst curriculum and materials to deliver ThinkFirst injury prevention programs to schools in their local communities. Each chapter has a sponsoring physician who helps with program promotion. Designated State Chapter and Training Centers coordinate ThinkFirst efforts with other chapters in their state. The State Chapter Directors Subcommittee is a close network, meeting monthly by teleconference for the purpose of chapter development. State chapters and chapters otherwise function equally in their local communities, recruiting and training speakers, scheduling and presenting programs to schools and community groups, and serving as injury prevention resources to their sponsoring organization and community. Many are involved in injury prevention coalitions at the local, state and national levels. to these areas can cause paralysis and affect the brain’s ability to control cognitive, emotional and physical functions. A VIP speaker is a young adult who gives a personal testimony on the circumstances that lead to a brain or spinal cord injury, and how such an injury has been life altering. The VIP speaker puts a real face to the facts. Whether in video or in person, their stories hit home with the listener. They are people who had familiar goals and aspirations as a child, but because of choices they made, or a perpetrator made, their dreams were shattered. The audience recognizes the poor choice, and often can relate to a close call with similar circumstances. They hear the pain that was experienced at the scene, in the hospital, and in rehabilitation. They ask how their family and friends reacted when they went home, and how they dealt with an injury. They learn about the realities of life after paralysis: using a catheter to urinate, needing the assistance of family members to dress and bathe, learning to adjust to using a wheelchair and adaptive equipment. They learn about brain injuries causing loss of memory, loss of articulating

program participants on a regular basis to determine program effectiveness and opportunities for improvements. Several published studies showing increased knowledge and behavior changes in students after participating in ThinkFirst programs can be found on our website. Programs include ThinkFirst for Kids, ThinkFirst for Youth and ThinkFirst for Teens. Programs at all levels explain the anatomy of the delicate brain and spinal cord, how injuries to these areas can cause permanent disabilities and the importance of protecting our bodies. Safety topics include vehicle safety, bicycle safety, playground and sports safety, water safety, and violence prevention. The message is “think first: use your mind to protect your body!” Students learn that while anyone can become injured, most injuries are preventable; we are each responsible for to making safe choices to protect ourselves and others. ThinkFirst for Kids is an evidencebased curriculum for grades 1-3, introducing “Street Smart,” the safety hero, and his friends through an animated video and song, followed by lessons and activities for

Improving Quality of Life for People with Disabilities

While injury prevention is clearly the primary mission of ThinkFirst, the program creates two additional powerful opportunities for improving the quality of life for people with SCI and other disabilities. First is a direct opportunity for individuals with SCI to participate actively in their local communities and schools. As part of the process, they also receive presentation skills training that could prove useful in a myriad of ways, not the least of which is in gaining employment. For some, the experience is actually a “first job” after injury, as VIP speakers are compensated for their presentations. Second, ThinkFirst brings an accurate and positive “disability awareness” message to young people, providing many children and teens with their first direct personal interaction with someone with a disability; someone who has overcome obstacles and is dedicated to helping others “think first. Debby Gerhardstein is Executive Director of the ThinkFirst National Injury Prevention Foundation. To learn more, visit the ThinkFirst website at www.thinkfirst.org.


January/February, 2008

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January/February, 2008

resource center

AgrAbility is Ready to Help Farmers with Disabilities By Taylor McLean and Charleene R. Frazier

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griculture is one of the most hazardous occupations. Each year hundreds of thousands of people working in agriculture experience injuries that limit their ability to perform essential farm tasks. Tens of thousands more become disabled as a result of a non-farm injury, illness, other health condition, or aging. For most farmers or ranchers, regardless of the size or complexity of their operation, the presence of a disability jeopardizes their rural and agricultural futures. Rural isolation, a tradition of self-reliance and gaps in rural service delivery systems frequently leave farmers with little idea of what to do next. If you are a farmer or rancher with a disability, you are not alone. The NSCIA resource center is loaded with information and resources. Go to NSCIA’s website under “A-Z Resource Listing: Rural Issues” or your State Resources pages. Not only will you find helpful resources for all facets of your life, you’ll also find a link to a wonderful program called AgrAbility, which serves farmers and ranchers with disabilities across the nation. Becky Brightwell, project manager of AgrAbility in Georgia, often compares Georgia farmer and AgrAbility client Andy Byrd to Walt Disney. Byrd is not a famous screen producer and Disney was certainly not a C5-C6 quadriplegic organic farmer. But both are visionaries, she says. Byrd created Whippoorwill Hollow Organic Farms, all from the seat of his wheelchair. As you turn into the driveway of Andy and Hilda Byrd’s farm, a bright, colorful sign welcomes you and blooming daffodils and fruit trees come into view as the drive winds toward the Rabbit Shack, the lively headquarters of Whippoorwill Hollow. On the porch is a board announcing the fresh produce of the day, freshly gathered eggs, and selection of potted plants, along with unique knick-knacks for sale. The character of this comfortable and welcoming place is a reflection of its proud owners. Andy and Hilda grew up only a few miles from each other in a small Georgia town called Walnut Grove. Andy’s family owned a grocery store and everything Hilda’s large farming family didn’t grow themselves they bought at Byrd’s grocery. Andy recalls that his favorite jobs as a youngster were working in the produce section, traveling to the farmers market with his father and working on his uncle’s dairy farm. Andy always

dreamed of having a farm of his own. As a young adult, Andy sustained a spinal cord injury from a diving accident at his family’s lake house. Andy’s accident did nothing to dampen his dream or get in the way of his passion for farming. In November 1997, Andy and Hilda finally purchased a farm of their own on 74 acres in Covington, Ga. In the beginning of 2000, the Byrds learned of AgrAbility. This United States Department of Agriculture funded grant program was created in the 1990 Farm Bill to assist people with disabilities employed in agriculture. It links cooperative extension offices with nonprofit disability service organizations to provide practical education and assistance to farmers, ranchers, farm workers and their families with disabilities who want to live a full and healthy rural lifestyle. AgrAbility has about 150 staff members in 24 states. They provide training, on-farm assessments and technical assistance directly to the farmer or rancher with a disability, as well as outreach, information and referral. farm and their invitation21:50 to the public scilife19:SCILIFE 12/30/2007 Page is6 alAgrAbility in Georgia, a project of the ways “come watch us grow.” University of Georgia and the Institute on Andy says, “We wouldn’t be where we Human Development and Disability, first are now if it weren’t for the connection to put Andy in touch with the Small BusiAgrAbility.” ness Development Center at the UniverTo learn more about AgrAbility, visit sity, where Andy developed a feasible busiSeptember/October 2007 the 6national website at www.agrabilityprojness plan for achieving growth of the farm. ect.org or call toll-free (800) 914-4424. To Georgia’s AgrAbility next brought in an access a wide variety of resources for living employee of Tech-Able, a nonprofit agency specializing in assistive technology, who taught Andy how to use Dragon Dictate, a software program that allows him to independently answer e-mails and do the farm’s bookkeeping. The National Spinal Cord Injury Association (NSCIA) is a non-profit membership organization for people with spinal In order to be able to roll between the cord injuries, diseases and dysfunction, their families, their rerows of his vegetable beds to observe the lated service providers, policy makers, organizations, hospitals crops, Andy learned to make a three-foot and others interested in the issues affecting the spinal cord inwalkway between every third row and built jury community. Our mission is to enable people with spinal cord injuries, diseases and dysfunction to achieve their highest each row of vegetables up on raised beds. level of independence, health and personal fulfillment by proUniversity of Georgia students and comviding resources, services and peer support. munity members volunteered to build and decorate raised flower beds which are placed Name at the perfect height for Andy’s wheelStreet chair. The height of the beds, combined with adaptive gardening tools, allow Andy City, State, Zip to work in the flower beds independently. E-mail (very important, if available) AgrAbility staff continue to work with the Byrds to find adaptive technology, such as automated gardening tools. Though Andy and Hilda have already Please check membership type: achieved so much at Whippoorwill Hollow, � Individual with SCI/D they continue to dream and in the process � Family member of friend they are enriching the lives of so many oth� Individual service or health care provider ers. Hilda recently became peer support co� Organizational ordinator with AgrAbility in Georgia. She and Andy are committed to being positive role models for other AgrAbility clients by showing them that the challenges of farming with a disability can be overcome by � Check Enclosed team work, determination, assistive tech� Credit Card (Visa, Mastercard, Amer. Exp.) nology and the desire to succeed. One of Andy’s next projects is constructing a small Name on card amphitheatre on the farm to be used for edCredit Card # ucational programs and community events. Expiration Date The Byrds are working with landscape arMy donation is $ chitects and other professionals to ensure that the farm is fully accessible, so that, as NSCIA Member Services Andy says, “People using a wheelchair can SCILife, HDI Publishers, PO Box 131401, sit anywhere and go anywhere they want Houston, TX 77219-1401 Phone (713) 526-6900 to, not just in designated places.” Andy and Hilda have big plans for the future of their

13

Farm Owners Andy and Hilda Byrd.

with spinal cord injury, visit www.spinalcord.org or contact the NSCIA resource center toll-free at (800) 962-9629 or email: info@spinalcord.org Taylor McLean is coordinator for the National AgrAbility project, a program of Easter Seals. Charleene Frazier, RN MS. is an Information Specialist in NSCIA’s Resource Center.

THE NATIONAL SPINAL CORD INJURY ASSOCIATION Become a Member Today.

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� Gifts of stocks or mutual funds � Gifts of real estate � Including NSCIA in my will Toll free (800) 962-9629 Fax (713) 526-7787 e-mail: membership@spinalcord.org web site: www.spinalcord.org

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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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January/February, 2008

legal

The Benefits and Features of Special Needs Trusts By Len Zandrow, NSCIA General Counsel

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hen SCI is the result of an accident, it may be possible to recover compensation from the party responsible for the injury. Any monies eventually received in a settlement, however, are often inadequate. Typically, settlements do not fully replace an individual’s economic losses. Compromises may have been necessary due to the uncertainties of litigation, the difficulties in proving negligence, the limited insurance coverage available to satisfy a judgment, medical or other liens and the costs of pursuing the claims. Even in cases where a recovery approximates the individual’s economic loss, it is wise to coordinate the settlement with any governmental benefits which that person may also be receiving. Doing so may help as-

who’s who at nscia?

Veronica Gonnello: Board Member By Santina Muha, SCILife Staff Writer

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eronica Gonnello is one of NSCIA’s newest board members, joining the board in November 2007. She has been a friend to the organization for the past two years, through her work as the show manager for Abilities Expo, a disability related trade show NSCIA sponsors. Eric Larson, NSCIA’s chief operating officer, and Gonnello have worked closely to develop a strong partnership for increased awareness and support for both organizations. In addition, she has served on the planning committee for the SCI Hall of Fame during the last two years and is a member of NSCIA’s Communications Committee. All who have met Vern would agree, she is one of NSCIA’s most dynamic personalities! She says, “When I was asked to be on the board of NSCIA with the amazing people that have devoted so much of their time, it was a huge high!” With a strong background in managing trade shows and conferences and expertise in special events planning, operations and sponsor recruitment, Gonnello has dabbled in many industries including art, fashion, beauty, pharmaceuticals, plastics and luxury travel. She has even done some modeling.

sure that he or she will be able to maintain as secure and independent a future as possible.

Special Needs Trusts

Special needs trusts are becoming increasingly popular for maximizing an injured party’s assets after a settlement. In the past, lawyers had traditionally relied on structured settlements, whereby sums were paid directly to the injured person in installments. Such periodic distributions offered certain advantages. They spread income over time. They avoided the risks of a single, lump sum payment which increased an individual’s exposure to liens and the potential for squandering by relatives or others. Like lump sum payments, however, periodic or structured payments were made directly to recipients and thus jeopardized their eligibility for governmental needs-based benefits, like Supplemental Security Income (SSI) and Medicaid. Similarly, lump sum buyouts have generally presented the same disadvantages and risks. Special needs trusts provide a better alternative. They are essentially ordinary trusts, In 2001 she took on her most important position of all – mother of six year old Lorenzo. Gonnello says she is most proud of graduating from college after working full time to pay for it. She is also proud of being a single mom while juggling a “great career and a fun life.” Larson says of Gonnello, “I first got to know Veronica in her role of managing Abilities Expo, a venue that is very important to our members. Right from the beginning, she has been a great listener and very willing to share ideas. Veronica brings us a valuable business perspective on the disability community and companies that market to our members. And she has a way of making almost anything seem fun!” Gonnello does not have an SCI, but she is passionate about our mission. “It’s the people that I have met at Expos, the friendships that have been created and the stories told. Many of the individuals are dynamic to say the least. The talents, determination, fight and devotion to making life happen is mind blowing.” Still, Gonnello understands what a person with serious medical issues may go through. She inherited a kidney disease from her mother called polycystic kidney disease. Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide. ADPKD affects more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined. Gonnello remains optimistic. She says, “There is no treatment or cure, but there is hope!” A typical day for Gonnello begins at 5:30 a.m. and ends at 11 p.m. She commutes three hours a day in good traffic, from

but are designed for a specific purpose. Like most trusts, they authorize a trustee or fiduciary to distribute monies for the benefit of a beneficiary. They also help protect a person’s assets from unwise or fraudulent distributions. A special needs trust goes further, however. It specifically limits the trustee’s ability to spend trust assets on services and goods covered by a government program. It also prevents the government from accessing trust funds in order to reimburse itself for benefits provided by programs like SSI and Medicaid. Since most needs-based government programs are based on the availability of assets and a person’s actual distributions of income, the special needs trust helps preserve a person with a disability’s financial resources. These trusts can substantially enhance the value of any settlement that the individual receives.

Common Features

No single type of special needs trust is ideal in every situation. A successful trust strikes a proper balance. Its language will be rigid enough to withstand attempts to invade it by forcing the payment of assets otherwise covered by governmental programs. At the same time, it will be flexible enough to adapt to the possibility of changed circumstances, both in the beneficiary’s personal needs and in the eligibility criteria of the particular programs involved. A well-written trust will

permit amendments to keep up with changing legal requirements. In general, however, a sound special needs trust has the following common features and operates in the following manner: • • •

• •

the trust must be irrevocable; the beneficiary cannot have direct access to, or be able to demand, the assets; cash distributions are not made directly to the beneficiary (instead, payments for items like food, clothing and shelter are tendered directly to the third party providing these services); the trustee is given the discretion to make distributions to the beneficiary, but is not required to do so; language in the trust provides that any distributions are intended to supplement, and not replace, governmental benefits; and the trust’s terms allow amendments for future changes in the law or in the beneficiary’s circumstances.

Eligibility under SSI and Medicaid may differ somewhat from state to state. Trust planning thus requires a careful analysis of the laws in each jurisdiction where the beneficiary now lives and where he or she may foreseeably move in the future. This is an area of potential pitfalls, because the law frequently changes. Only a specialist in this field should be consulted and relied upon.

Veronica Gonnello with her son, Lorenzo. her home in Boontown, N.J. to Manhattan. “A perfect day is when my son looks at me and says, ‘Mom – You’re wearing me out!’” On her down time, Gonnello says she loves to cook. “I could watch the food channel for hours on end.” She claims to sing like she was a rock star in a former life and though never professionally trained, she has won awards for dancing. Often described as intense, comical and artsy, Gonnello is a modern day Lucille Ball. She would love to host her own talk show or star in her own sitcom someday. She says, “Believe me, my life is a sitcom!” To those living with a SCI/D, Gonnello says, “GET OUT THERE! Take what could be a negative experience and embrace what the positives actually are. Realize that the disability does not define you, but is just a part of you.”

Gonnello’s personal heroes are the kids. “It is the best when a child comes over to me, smiles and says, ‘Thank you for doing this for us.’ It makes me cry every time!” Another personal hero is the parent that drives eight hours to an expo to get disability related products that benefit their child.

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


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

To find out more about the SCI Hall of Fame or to see a list of previous inductees or this year’s nominees, visit www. January/February, 2008 15 spinalcord.org.

Who’s Who in American Law 1985 through present

Attorney Ronald R. Gilbert

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

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

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

°

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

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. 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 ° Legal Options• Finding And Choosing An Attorney • Getting Help: A Guide To Organizations ° Improving Safety Action Details, GoLegal To Ron’s Website — • ForThrough www.fscip.org For Legal Options And ° Finding and Choosing An Attorney Professional Help. ° Getting Help: A Guide To Organizations

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TEL: EMAIL: Questex Media Group provides certain customer contact data (such as names, addresses, phone numbers and e-mail addresses) to third parties who wish to promote relevant products, services and other opportunities which may be of interest to you. If you do not want Questex Media Group to make your contact information available to third parties for marketing purposes, simply call 800-385-3085 between the hours of 9 am and 5 pm (EST) and follow the instructions to remove your name from Questex lists. © 2008 Questex Media Group. All rights reserved.

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January/February, 2008

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… …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.

…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.

…raising voices. The Communications Committee works with the VP of Communications and NSCIA staff to facilitate communications both within and outside the Association.

…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.

…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.

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.

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.


January/February, 2008

bac

BAC Founding Member Ron Pettit One By Air, Too By Sea By Tari Hartman Squire, BAC Liaison to the NSCIA Board of Directors

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hether ensuring accessible airline travel or cruise vacations, founding BAC member Ron Pettit is on the case, and the sky is the limit. In 2004, when NSCIA’s BAC was a twinkle in Kevin Bradley’s eye, Pettit was ready. As manager of customers with disabilities for Northwest Airlines, he created an award-winning customer advisory board on disabilities Ron Petit, BAC member. that serves as a blueprint for input from a variety of people with disabilities. Pettit immediately recruited NSCIA’s

current board president Pat Maher, when Maher was Chapter Liaison for Northwest’s advisory board, then later used Maher as the model in the revised disability brochure and updated disability training video for front line airline personnel. Under Pettit’s leadership, Northwest conducted training with the airline’s team at Washington, D.C.’s Reagan National Airport utilizing NSCIA’s Metro Washington D.C. Chapter, Spinal Cord Injury Network. In 2006, Pettit left his airline career on the tarmac, jumped ship to become access manager for Royal Caribbean Cruises, Ltd. and wasted no time increasing accessibility there too. As he was driving from Minneapolis, where Northwest is based, to Miamibased Royal Caribbean, his reputation preceded him. EIN SOF Communications was tapped to help cast a male model who uses a wheelchair for a promotional spot of the company’s newest ship, Freedom of the Seas. The NSCIA network was activated and Pete Anziano from Atlanta based Shepherd Center was selected. Royal Caribbean noticed an increase in cruising among people with disabilities and decided to pursue this market. A study by the Open Doors Organization found that 12 percent of Americans with disabilities have taken a cruise in the last five years, compared to 10 percent of the total U.S. population in the last three years. Royal Caribbean is one of the world’s largest cruise companies, operating Royal Caribbean International, Celebrity Cruises and Azamara and Pullmantur brands, with 35 ships and six more under construction. One of Pettit’s many responsibilities is ensuring new ships have all required acces-

sibility features. Two new ships will be introduced in 2008: Royal Caribbean International’s Independence of the Seas in May and Celebrity Cruises’ Celebrity Solstice in December. Independence of the Seas will share the title of world’s largest cruise ship with sister ships, Freedom of the Seas (launched in May 2006) and Liberty of the Seas (May 2007). Freedom class ships have 32 accessible staterooms, the most of any cruise ship. Solstice class ships will have 30 accessible staterooms, the most in Celebrity’s fleet. Accessible staterooms will feature automatic doors, a first for Celebrity Cruises. Accessible staterooms also have 32 to 34- inch doors, roll-in showers, grab bars, lowered sinks and vanities, lowered closet rods and safes and a five-foot turning radius in sleeping and bathroom areas. Royal Caribbean offers a wide range of products, features and services for guests with disabilities, including: • • •

spacious corridors, pool and whirlpool lifts and ramped public areas; Braille on menus, stateroom doors, public area room signs and elevator buttons; portable room kits including a visual door knocking alert, smoke detector and alarm clock with an under-pillow vibrator; closed-captioned televisions, amplified telephones in staterooms and public areas and assistive listening systems.

Royal Caribbean follows the ADA guidelines to ensure its ships are accessible and is completing a multimillion dollar renovation

project to upgrade and enhance offerings on all ships. This project ensures fleet-wide consistent accessibility features. NSCIA CEO Marcie Roth sums it up best. “Royal Caribbean is a longtime leader in accessible cruising and having had the pleasure of two cruise experiences along with people who use wheelchairs, I got to enjoy many features that make cruising a wonderful way to travel for all. With NSCIA friend Ron Pettit in a key role serving accessibility needs of people with disabilities, Royal Caribbean demonstrates true commitment to meeting the needs of an important segment of the traveling population.” Cruises are ideal for people with disabilities, particularly wheelchair users, because travelers have less accessibility surprises, both onboard ship and at vacation destinations. Travelers with disabilities should identify their specific needs with their travel agent and/or the cruise line when booking. Although Royal Caribbean does not require information about your disability, the more information the better prepared they are to meet your needs, especially if you require assistive equipment or customized accommodations. At most cruise lines, arrangements are made directly with the access department. Contact the Royal Caribbean access department at 866-592-7225 or special_needs@rccl.com. “One of the reasons I joined the Royal Caribbean team is because I knew they have the best program for guests with disabilities,” Pettit says. “Royal Caribbean are innovators and many of their innovations, like rock climbing walls and ice skating rinks, are accessible. That shows their solid commitment to people with disabilities.”

NOTICE NSCIA’s mailing address has changed _iWdel[hWYj_l[XbWZZ[hYWki_d] oekjeb_l[WdkdZ[hWYj_l[b_\[U

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17

One Church Street Ste. 600 Rockville, MD 20850

Mail or packages sent to our old Bethesda address will NOT be forwarded.


18

January/February, 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

Contact: Robin Kohn Email: rkohn@mail.ucf.edu Phone : (407) 623-1070 Contact: Carl Miller

Fax: (781) 933-0043 Contact: Kevin Gibson Website: www.sciboston.com E-mail: sciboston@aol.com

Contact: Ron Quartararo Website: www.testaverdefund.org E-mail: info@testaverdefund.org

HEALTHSOUTH - Support Group 90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866 Contact Vicki Yasova

Support Groups East Valley Support Group (COMPASS) Phone: (602) 241-1006 Contact: Pauline Staples E-mail: plstaples@msn.com

Tampa General Hospital SCI Support Group 2 Columbia Dr., Tampa, Florida, 33601 Phone: (800) 995-8544

SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, Massachusetts Phone: (617) 414-5000 Website: www.sciboston.com/support.htm

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

Flagstaff Support Group Phone: (928) 527-8567 Contact: Al White

GEORGIA Support Groups Columbus SCI Support Group Phone: (703) 322-9039 Contact: Ramona Cost E-mail: rvcost@mchsi.com

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 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

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 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/

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

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

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

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: http://www.metrohealth.org/ body.cfm?id=2391&oTopID=2391 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

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

SOUTH CAROLINA CHAPTER NSCIA South Carolina Chapter 500 Taylor Street Suite 403, Columbia, South Carolina, 29201 Phone: (866) 445-5509 Fax: (803) 376-4156 Contact: Debra Matney Website: www.scscia.org Email: debscia@bellsouth.net

Long Island Spinal Cord Injury Phone: (631) 221-9255

SUPPORT GROUPS Chester County Chapter Peer Support

The Chester Regional Medical Center, Rehabilitation Dept. 1 Medical Park Drive, Chester, South Carolina, 29706 Phone: (803) 482-4389 Contact: Lee Carter E-mail: llctcarter@chestertel.com Columbia, SC Area Support Group 500 Taylor St, Columbia, South Carolina, 29201 Phone: (803) 252-2198 Contact: Richard Bridges E-mail: richardscia@bellsouth.net Florence, SC Area Support Group Phone: (843) 679-9932 Contact: Ronnie McFadden E-mail: ronnielmc@yahoo.com Orangeburg, SC Area Support Group Phone: (803) 829-2043 Contact: Rebecca Felder E-mail: bfelder@orbgdpu.com Rock Hill Area Support Group Phone: (803) 366-5659 Cotact: Bob Alders Email: bobcatawba@aol.com Spartanburg, SC Area Support Group Phone: (864) 595-1947 Contact: Dot Colson E-mail: DColson@Dennys.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, NSCIA P.O. Box 8326 , Richmond, Virginia, 23226 Phone: (804) 726-4990 Contact: Shawn Floyd Website: www.odcnscia.org E-mail: shawn.floyd@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: Bill Wright Mary Rostkowski Website: www.nsciasew.org E-mail: nsciagmacwi@sbcglobal.net

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. 1  

January/February, 2008. Southern California Emergency Preparedness for Citizens with Disabilities Still Needs Improvement. NSCIA Celebrates...