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Vol. 6, No. 5

www.spinalcord.org

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Vol. 6, No. 5

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

George Flores: Standing Tall in Many Ways By Santina Muha, Staff Writer

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eorge Flores is making harps -- again. Flores was a harp technician when he injured his spinal cord in a motorcycle crash that left him paralyzed in 2004. But that did not stop him from building a “Harp for Charity”, a harp which will be auctioned off with proceeds benefitting the National Spinal Cord Injury Association (NSCIA). In order to complete a harp, or to tune and calibrate one, you must be able to stand to reach the highest point of this tall instrument. So how can a T5 paraplegic reach the top of a six foot tall concert grand harp, the

Ms. Wheelchair America A First Hand Account By Angie Plager

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ctober 2009. Not being at all familiar with the pageant world, I had no idea what to expect…not to mention what I was getting myself into! In March of 2009 I competed to become Ms. Wheelchair Iowa 2009. After earning the privilege to wear the crown and hold this annual title, I then elected to compete nationally in the Ms. Wheelchair America 2010 pageant. The mission of Ms. Wheelchair America, as stated on their website, is to provide an opportunity for women of achievement who happen to be wheelchair users to successfully educate and advocate for the more than 52 million Americans living with disabilities. This mission is also a base of the Ms. Wheelchair state programs. Additionally, this is a program for achievement and opportunity. Title holders are spokeswomen who positively communicate, to those

largest in the harp family? Thanks to a little modern technology and a lot of perseverance, Flores has been able to make it happen. A standing wheelchair made it possible for Flores to do much of the manipulating at the highest parts of this harp himself over a period of three months – quick turnaround for this painstaking process. Flores received the chair through a vocational rehabilitation program. “For me to service the harp from a standing wheelchair is significant because it carries history,” Flores said. “The image of harp makers has been inscribed on cave walls. Now, in more modern times, the image of me in my standing frame chair has been passed around the internet on a global scale.” Flores has become well known for his efforts from the disability community as well as the harp community. Flores says, “I’ve got the eyes of the world on me right now. There are people watching.” He goes on, “Now, if any, is a great time where I can do something and give something back on a huge scale. The entire world is focusing on my ability to do this successfully.” And now is a great time for Flores to chase this dream. Since his injury, he has spent the past five years working to get

his body and mind back in good health. He is particularly proud of this mission and hopes that completion of this harp brings more than music to people’s ears. “It’s something that I knew the world would connect with and I thought about the fact that harps are known around the world as being a healing instrument. I thought this would be a great opportunity to bring that same healing power to the world and people with spinal cord injuries.” Flores also credits the support of the Venus Harp Company in Chicago, who have enthusiastically supported Flores personally, as well as the donation of the harp to NSCIA. Venus is a leading maker of this classic instrument. The harp consists of many elements. Overall it is made mostly of wood, while

with and without disabilities, using her title to open doors and speak to those who may not normally listen. To prepare for this week long competition in August, I had to run my own campaign, raising enough money for the $1500 registration fee and to cover my expenses occurred from the Iowa activities and events. I chose to run on a platform that is an extreme passion of mine, “Accessibility Awareness” and putting it into action! Through public speaking, appearances and events, I raise awareness for the need of wheelchair accessibility, illustrating how to eliminate structural and physical barriers; and express that just because an individual uses wheels instead of legs, does not convey the absence of dreams, goals and aspirations! One project that has been completed is collaboration with Cambridge City Council, my hometown, to update sections of sidewalks around the City Park and the entrance to the Community Center, which also serves as our Voting Poll, making them wheelchair accessible. Before the national competition, I was averaging two events or appearances per week, but after South Dakota I’ve averaged one event every ten days or so. These are just events I attend as Ms. Wheelchair

Iowa 2009; I have had many other obligations as President of Spinal Cord Injury Association of Iowa (SCIA of Iowa) that required my attention as well. The August week spent in Rapid City, South Dakota was amazing, inspiring, and a

Continued on page 5

George Flores and his Harp for Charity (photo by Richard Oles). self learning experience! We had the opportunity to meet, and become friends with, 26 other state representatives. One highlight of the week was hearing many personal stories - They were truly inspiring and motivating. Continued on page 7

NSCIA Communication Associate Santina Muha and NSCIA Iowa Chapter president Angie Plager competed in the 2010 Ms. Wheelchair America competition.


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Vol. 6, No. 5

from the president

Reach for the Stars! SCILife STAFF MANAGING EDITOR: K. Eric Larson STAFF WRITER: Santina Muha Design and Layout: Nikolai Alexeev Advertising Sales: Joyce Parker Data Input: Bonnie J. Haynes

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

Board Of Directors Executive Committee

PRESIDENT: Patrick Maher Immediate Past President: Harley Thomas (1939 – 2007) CHAIR, EXECUTIVE COMMITTEE: Andy Hicks Vice-President for Chapters: Deb Myers Secretary/Treasurer: Janeen Earwood CEO/EXECUTIVE DIRECTOR: K. Eric Larson VICE-PRESIDENT FOR COMMUNICATIONS: Donald Dawkins VICE-PRESIDENT FOR DEVELOPMENT: Carmen DiGiovine, PhD VICE-PRESIDENT FOR MEMBERSHIP: John Fioriti

Directors Paul Aronsohn Pamela Ballard, MD John Fioriti Gretchen Fox Veronica Gonnello Christine N. Sang, M.D., M.P.H

General Counsel Leonard Zandrow, Esquire

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

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

For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston TX 77219-1401 tel: 713.526.6900 fax: 713.526.7787 email: chaynes@hdipub.com www.hdipub.com SCILife © 2009

By Patrick Maher, President, NSCIA Board of Directors

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n a Thursday evening late in September just west of Chicago, as a hint of autumn was beginning to tickle the senses – the sun appearing lower on the horizon and warming rather than torching us, fallen leaves just beginning to gather in remote corners of homes and buildings and crackle underneath us, Eric Larson and I, along with a small, committed group of volunteer host committee members and about 100 friends and supporters, personally celebrated NSCIA’s 60th year of service at our Stars under the Stars fundraiser. The evening was a great success, set in the elegantly appointed, historic Katherine Legge Lodge, to a theme that encouraged both our supporters and members to reach for the stars in all of life’s pursuits. Our theme was carried through in the playful décor of Chicago sports teams’ colors throughout, autographed sports memorabilia as well as some exceptional area cultural packages featured in our silent auction. The evening’s highlight was our conferring the title of “NSCIA Star” upon two extraordinary women – Linda Mastandrea and Jean Driscoll. Both Linda and Jean epitomize NSCIA’s emphasis on supporting and advocating for the highest possible

NSCIA Accepting Nominations for SCI Hall of Fame Class of 2009

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ominations for the 2009 Spinal Cord Injury (SCI) Hall of Fame are being accepted now through December 15, 2009. Anyone is eligible to nominate candidates online at www.spinalcord.org in any one or more of 17 available categories. Nominations will be vetted and confirmed for completeness and accuracy, and then NSCIA members choose the 2009 Hall of Fame Inductees in each category through an online voting process. Finalists will be reviewed by a Hall of Fame Selection Committee before the final inductees are

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quality of life for anyone with a disability, whether SCI/D or other. Both are Paralympic Gold Medalists, champions, authors, sought-after public speakers, professionals and, perhaps most impactful, advocates for change. We couldn’t have identified two stronger advocates to carry our mission, and the evening, forward! With an inspired video message from Coach Bruce Weber of the University of Illinois Basketball Team, our two honorees, both Illinois graduates and former varsity athletes on U of I’s renowned wheelchair basketball and track teams, were introduced to the warm and receptive guests. Linda was, unfortunately, unable to join us in person due to her being honored as a member of the Chicago 2016 Olympic Bid Team to make the final proposals to the IOC in Copenhagen. She did provide a wonderful message that you can find on www.spinalcord.org under the Stars under the Stars event link along with Coach Weber’s message. Thankfully, Jean was able to join us, and her message left the audience, allow me an obvious quip, “star struck”. As the first 8-time Boston Marathon Champion, among too many other extraordinary achievements to catalog in this brief commentary, Jean wouldn’t have needed to speak in order to be heard. She engenders so many exceptional qualities, including humility beyond measure and warmth that enveloped the room, that we were all sorry that the formal program, or at least her message, wasn’t longer. In essence, the message of our Stars as well as Coach Weber was that NSCIA’s mission continues to be essential to everyone in our nation dealing with the often overwhelming consequences of SCI/D. Our support, direct and indirect resources and public policy advocacy, both in Washington D.C. through our growing and engaged collaboration with United Spinal Association, as well as at the critical local and regional level through the great work of our chapters, continues to be as valid today as

it was at our founding 60 years ago. A high quality of life following the onset of SCI/D doesn’t just happen. NSCIA is a critical resource for thousands of our members, and non-members, who don’t know where to turn for life-impacting resources during the most challenging and overwhelming period in their lives. And that period isn’t always at the onset of the injury or diagnosis; it may be years down the road when serious physical, psycho-social or emotional health issues develop. We’re always there! My purposes in driving Stars under the Stars were twofold. First, as I’ve noted frequently of late, to emphasize that NSCIA and its board continue to work daily to help establish a firmer financial footing in this chronically challenging environment. Second, I wanted to be certain that my fellow board members recognize that our mission and message continues to ring true, and that each of us can help drive that message home, and can count on our friends, family, colleagues, neighbors and businesses in our respective regions of the nation to support our message and mission philosophically and financially – even in these trying times. SCI/D can happen to any of us, at any time. I want to thank Coach Weber, Julie Pioletti, Linda Mastandrea, Jean Driscoll, Katherine Legge Lodge and staff, Taste of Home Catering, our very dedicated Stars Host Committee, The George Mattson Trio, Frank and BK Maher, SPR Companies, deVine Wines, Marianjoy Rehabilitation Hospital, Nancy and Tony Parkinson, all of our silent auction donors, our Executive Director Eric Larson, and everyone who attended or supported Stars, for contributing to a great evening. You are gracious, valued and dear friends of NSCIA. To parrot Jean Driscoll from her eloquent message to our Stars under the Stars guests – quoting the visionary urban planner Daniel Burnham – “make no little plans; they have no magic to stir men’s blood”. Reach for the Stars!

announced. Formed by NSCIA in 2005, the SCI Hall of Fame was created to celebrate and honor individuals and organizations that have made significant contributions to quality of life and advancements toward a better future for all individuals with spinal cord injury and disorders. Categories currently include Assistive Technology, Benefactor, Corporate Executive, Disability Activist, Disability Educator, Entertainment, Entrepreneur, Government Executive, Grassroots Organizer, Legislative, Media, Research in Basic Science, Research in Quality of Life, Sports, Military, International and Direct Provider. Detailed descriptions of the categories, a full list of SCI Hall of Fame members and more about the SCI Hall of Fame are available online. In addition to the SCI Hall of Fame categories, nominations will be accepted for the 2009 NSCIA Emerging Leader Award for exceptional leadership qualities in a local or regional capacity toward the improvement of opportunities or quality of life for persons living with SCI.

NSCIA hosted the 4th annual SCI Hall of Fame Induction Ceremony and Gala last fall in New Orleans to recognize the anniversary of Hurricane Katrina. In conjunction with the celebration, NSCIA hosted Building a Culture of Preparedness...Including Everyone, a town hall meeting on disaster preparedness, which featured a keynote address by Lt. Gen. Russel Honore (U.S. Army Ret.). The mission of The National Spinal Cord Injury Association (NSCIA) is to enable people with spinal cord injury and disease (SCI/D) to achieve their highest level of independence, health, and quality of life. NSCIA actively advocates for best practices and public policies that proactively affect people with SCI/D, their families and service providers. The association conducts public policy initiatives through its local chapters and at the national level and actively collaborates with other national organizations on issues of mutual concern. For more information about the SCI Hall of Fame, visit www.spinalcord.org or contact NSCIA at info@spinalcord.org or 1-800-962-9629.


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Vol. 6, No. 5

from the executive director

Now it’s Your Turn By K. Eric Larson, Executive Director and CEO, NSCIA

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f you read SCILife or SCI e-news, if you attend industry shows like Medtrade, or frankly if you run into me on the street – you’ve likely heard me talk about the need, and the opportunity for a strong, independent consumer voice for people living with spinal cord injury and disease. Now it’s your turn! As your national consumer organization, we have been, and continue to be, the mouthpiece for this voice in a range of venues. Just this month we presented testimony to the Federal Communications Commission (FCC) on the importance of universal, affordable access to broadband (high speed) internet connectivity for ALL Americans. We have been in communication with major industry and professional trade associations on issues related to improving access to complex rehabilitation products and services. And we’ve worked on dozens of fronts related to healthcare reform. The goal is to enhance our position in the nation’s capital and to expand our reach into the community of people with disabilities. Guided by input from NSCIA’s and United Spinal’s public policy committees, Spinal Cord Advocates public policy staff will work from a Washington D.C.-based office to develop clear and well defined policy positions representing the community of people with spinal cord disabilities. But the most exciting opportunities for making our public policy voice more robust might be just around the corner. Those are the opportunities for you to play a more direct part in the process, and here are three ways you can get started. First, wheelchair users can start raising your voice today by sharing your thoughts about your most recent wheelchair purchase experience at www.spinalcord.org/survey. National Spinal Cord Injury Association (NSCIA) has been joined by several other national consumer organizations in a consumer-driven, industry-supported initiative to collect and analyze objective data useful in educating policy makers on the consumer’s need for certain high-end rehab items and services

related to these items (fittings, home visits, etc.). Results from the online survey will be presented to policymakers on Capitol Hill and at CMS, in an effort to address the fact that Medicare has limited or no coverage and payment for many such items impedes consumers’ abilities to fully engage in their communities and realize their highest possible quality of life. Our hope is that what we learn from this initiative can also guide future consumer driven efforts to educate consumers and to improve policy on other key issues impacting people with mobility disabilities. Organizations that have supported us in developing this survey include United Spinal Association, United Cerebral Palsy Association, Muscular Dystrophy Association (MDA) and Paralyzed Veterans of America (PVA), ITEM Coalition, National Multiple Sclerosis Society, and The ALS Association. The group has also sought and accepted input from respected clinicians and from members of industry groups. The initiative has been formally endorsed by three leading trade associations including National Registry of Rehabilitation Technology Suppliers (NRRTS), American Association for Homecare (AAHomecare) and the National Coalition for Assistive and Rehab Technology (NCART). Second, you can visit the new consumer web portal spinalcordadvocates.org for the grassroots component of our public policy program. See what your peers are saying about the issues, and then add your voice by posting your own comment. It’s easy to navigate and lets you hone in on what’s important to you. You can even sign up to receive email updates. Third, become active in your community. One of the best ways to do that is through your local NSCIA chapter. If you don’t know if there is an NSCIA chapter near you, or don’t have the contact information, we can help. Look on our web site under “Local Resources by State” (http:// www.spinalcord.org/chapters) and the NSCIA Chapter in your state will be the first resource listed for your state. Or just call us at 800-962-9629. Or consider taking on a leadership role as an Advocacy Leader within Spinal Cord Advocates. Our public policy collaboration with United Spinal Association gives members of both organizations the opportunity to bring important advocacy issues to the “grassroots” of our community, and provide us with feedback from your community as well. Spinal Cord Advocates aims to recruit, organize and train community leaders, then support them in organizing and implementing grassroots activities. And our Advocacy Leaders will play a key role in making this strategy effective. Email me directly at elarson@spinalcord.org if you want to learn more about this opportunity. As always, thanks for being a member of NSCIA and thanks for your support.

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

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Vol. 6, No. 5

legal How Will the Supreme Court’s Newest Member Rule on ADA Cases? By Len Zandrow, NSCIA General Counsel

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he NSCIA has maintained a long-standing, leadership role opposing assisted suicide, because it tends to discriminate against and degrade the lives of people with disabilities. In Baxter, the disability organizations argued that assisted suicide serves no legitimate public interest because of the great threats it poses to persons with disabilities. This past August, Sonia Sotomayor was sworn in as the 111th justice of the U. S. Supreme Court. She is the first Hispanic and the third woman to serve on the court. Her background has attracted much atten-

George Flores... Continued from page 1

the action, or upper mechanized part of the instrument, is comprised of brass and steel. The strings are made of steel, nylon and animal gut. According to Flores, no synthetic material out there has been able to match the sound quality that is attained when the instrument is made with such parts from nature. The entire piece is finished and decals are hand painted on the soundboard, all of which Flores had a part in. There is also new technology which was implemented in this particular harp that no other harp in the world has. “It’s a competitive industry, so this technology will remain a secret for now,” Flores shares. Flores admits he will not be making harps for too much longer, so it was a great victory for him to be able to accomplish this in his lifetime post-injury. After Flores wheels away from the world of making harps, he hopes his legacy will continue. “I want to train an apprentice to learn some of the tricks of the trade that I have come to know, because the reality is, sooner or later it is going to take a physical toll on me.” Building this harp certainly has not been an easy task for Flores. After suffering severe injuries from the motorcycle accident, complications followed, forcing him to endure multiple surgeries and go through various medications. “My immune system, from everything I have been through, is still recovering.” There are many physical challenges to building an instrument of such size and detail. Flores’ body was often left sore and achy from working for long periods of time.

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tion. Her life story began in a Bronx housing project. She ultimately attended two Ivy League schools and then pursued a legal career that included stints with a District Attorney’s office, a corporate law firm, and a legal defense fund. She was appointed a judge of the Federal District Court in 1992 and was later elevated to the Circuit Court of Appeals based in New York. Judge Sotomayor took the bench for the first time when the Supreme Court opened its latest session on October 5th. Many court watchers have speculated how she will impact the court and affect the outcome of key controversies. For the disability community, one natural concern is how Judge Sotomayor will likely interpret the Americans with Disabilities Act (ADA). Her past judicial record may offer some insights into her future inclinations. Thus far in her judicial career, Judge Sotomayor has participated in at least 21 published decisions involving ADA claimants. In general, her record on these cases appears to be evenly balanced. In eleven of the controversies, she has sided with the individual plaintiffs, and in ten controversies she has sided with defendants, most often employers. It can be difficult and potentially misleading to attempt extrapolating too much meaning from these decisions. Some of the cases, like the Simmons decision in 2002, involve technical or procedural issues like the application of a particular filing deadline in the unique circumstances. In addition, 15 of the 21 ADA cases were de-

cided by a judicial panel comprised of three members, so Judge Sotomayor’s personal opinions are not necessarily clear nor reflected in the language of the decision. Of the six ADA opinions that the judge has personally authored, four have favored the plaintiffs and two have favored the defendants. Judge Sotomayor’s most famous ADA ruling is probably Bartlett v. New York State Board of Law Examiners, a case with a convoluted history through the court system. After conducting a 21-day trial in Bartlett, Judge Sotomayor originally rendered a decision in favor of the plaintiff. This decision was then reviewed twice by the Second Circuit Court of Appeals and once by the U. S. Supreme Court, which considered whether the plaintiff was disabled within the meaning of recently decided precedent. Eventually, the case was remanded back to Judge Sotomayor, who conducted an additional 5-day trial in light of the newlyclarified ADA standards. Ultimately, the judge concluded that the plaintiff Bartlett’s dyslexia was a disability under the ADA and that she had been wrongly denied reasonable accommodations while taking her bar examination. Another noteworthy ADA decision authored by Judge Sotomayor is her dissenting opinion in Equal Employment Opportunity Commission v. J. B. Hunt Transport, Inc., in which she criticized the majority for concluding that a motor carrier had not discriminated against truck drivers for using certain prescription medications. In

two other decisions, the judge reversed the judgments of the trial court and reinstated ADA claims against employers – the Norville v. Staten Island University Hospital case (the reassignment of disabled nurse did not constitute a reasonable accommodation in the circumstances) and the Parker v. Columbia Pictures Industries case (the disputed nature of the evidence required a trial on the issues of reasonable accommodation and the employer’s mixed motives in discharging the disabled employee). The two rulings authored by Judge Sotomayor that were adverse to ADA claimants involved unusual and problematic situations. In Anthony v. City of New York, for example, the judge upheld a lower court decision that police officers’ actions in seizing and involuntarily hospitalizing a woman with severe psychiatric problems did not violate her rights under the ADA. In Valentine v. Standard & Poor’s, the judge ruled that certain acts of gross misconduct by an employee suffering from a manicdepressive disorder constituted a legitimate non-discriminatory reason for terminating him. Obviously, Judge Sotomayor’s legacy on ADA jurisprudence is only beginning. She is 55 years old and among the youngest appointees to the high court bench. As she begins her tenure on the Supreme Court and if her past track record on the ADA is any indication, the disability community has reason to hope that she will favorably interpret this important civil rights legislation for years to come.

“It is all around physical on the body. It is the excruciating time and effort of working from the wheelchair that makes it difficult, but you have to be innovative and figure out ways to conserve the use of your body.” Still, little by little, this feat will be conquered and the 47 stringed instrument will stand tall at an auction which all hope will bring NSCIA some funding needed to help fulfill the mission of enabling people with spinal cord injury and disease (SCI/D) to achieve their highest level of independence, health, and personal fulfillment by providing resources, services, and peer support. “I think NSCIA has done a great of job of helping to make changes and I think they need to continue to get the message out.” Having had a relationship with NSCIA for a few years now, the organization has been happy to follow Flores’ post-injury career and assist in any way possible, and is grateful that he has decided to give back in such a creative and inspirational way. “NSCIA came to my aid a few times. Bill Fertig, the association’s Resource Center manager, was instrumental in helping me get through to some of my doctors. He made phone calls to the hospital for me when I did not have the energy to do it myself.” He goes on, “NSCIA intervened at a time when I needed a little support and could not do certain things alone.” When Flores originally set out to obtain a standing frame wheelchair, NSCIA jumped in to support him. “Even though it wasn’t NSCIA who physically provided me with the chair, they were a fly in someone’s ear - the grease that needed to be put on somebody’s wheel.” When Flores came up with the concept of “Harp for Charity”, he pitched the idea

to several organizations, trying to find the best fit. “Several organizations approached me, but none had the personal spin on it that NSCIA did. With NSCIA it wasn’t all about the money, but rather what we can do and who we can help with the money. And I remembered all the things the organization did for me. So I went with my gut and am happy to be doing this in conjunction with NSCIA.” Getting to where he is today was clearly not a pleasant journey and was one filled with trials and tribulations, some that nearly cost him his life. But overall Flores remains optimistic. “I have no bitter feelings toward the wonderful people in health care that truly want to take care of people,” he offers. “My complications were the result of a failed health system that focused on profit rather than the person struggling with SCI and I hope the current administration is successful in reforming the system to benefit people with SCI and find ways to improve the quality of care.” To other people out who there who may be facing similar challenges, Flores advises to make a goal in your life. He says, “Think of a realistic point where you want to be. Consider what is possible. Ask yourself what you are capable of doing. You can do it, you just have to be innovative and think differently.” He also warns, “Listen to your body. Even though certain parts of your body cannot feel, they will still talk to you in different ways. My body gives me signs, and I listen to them. That’s one of the reasons I’ve been successful.” Flores states the completion of this harp is a closing chapter in his life. “It was a goal I made from my bed and it is a goal I reached.

It’s a way of saying, ‘I did it.’” Besides doing this to fulfill a personal goal, Flores says, “I did this for my mother who passed away a year before my accident. Without the beautiful gift of life, it would never have been possible.” “I also did this for the wonderful people of NSCIA and to all my brothers and sisters who live with SCI every day.” For more information on Venus Harps, visit www.VenusHarps.com and for more information on George Flores, visit www. myspace.com/george_flores.

Flores utilized a standing wheelchair to reach the highest parts of the instrument.


Vol. 6, No. 5

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medical/science Technology Options for Managing Chronic Pain By Jennifer French

C

hronic pain is a silent condition that commonly goes untreated or under treated. Nearly 76.5 million Americans are affected by chronic pain, according to the American Pain Foundation. In this issue of the Neurotechnology Series, we will visit some of the technology options for treating chronic pain, specifically neuropathic (nervous system generated) pain. Each application discussed in this series, may not be specifically approved for spinal cord injury or diseases. Rather, the therapies mentioned have been approved for specific types of pain. Before considering any treatments, discuss the options and your type of pain with a medical professional familiar with your specific case. These options are not a “cure” for the pain, but a means to manage the pain or an alterative to prescription medications. Despite the years of development and availability, technology options are not typically conventional options. There are many areas of neurotechnology that are being investigated for the treatment of chronic pain, such as deep brain stimulation, and transcranial magnetic stimulation. For this article, we will discuss two areas of treatment that are currently available; transcutaneous electrical nerve stimulation (TENS) and spinal cord stimulation (SCS).

TENS therapy

It is an external device which means all components are outside the body. These units

business NSCIA Executive Director Joins HME Consumer Panel in Looking at Medicare Policy From User’s Perspective

work by delivering low level electrical stimulation through electrodes placed directly on the skin of the affected area. The low level electrical stimulation causes a reaction in the sensory and motor nerve fibers that helps to alleviate pain by blocking pain messages being sent to the brain. TENS therapy requires a prescription. It can be a non-invasive, and economical solution to pain management with low side effects. This is typically partnered with physical therapy.

Spinal Cord Stimulation (SCS)

This is a hybrid system comprised of implanted electrodes and a neurostimulator along with an external control unit. The system uses electrical stimulation to block the pain pathways to the brain that travel through the spinal cord. The electrodes are positioned using a small needle or by making an incision and then connecting them to the neurostimulator, which is also the power source. The user has the ability to keep the system on permanently or as needed. Once the permanent system is implanted, it is adjusted for the specific needs of the user. With the 10 year life on the implanted rechargeable battery, the user can use the external control unit to adjust the system.

Battling the Pain

Life was under control for Michelle; manager of a medical practice, wife, and mother of 2 sons. Juggling these responsibilities, Michelle was on the go. One day, “I remember; it was October 21,” Michelle reflects. “I picked up my son and it was extremely painful.” The cause was herniation of her L4, L5 and S1 vertebrae. The doctors discovered that she had a tumor in her spine; the monster was awake. Since it was not cancerous, she decided against surgically removing the tumor and deal with the pain. But it was that pain that consumed her life. This medical burden was also a financial burden; she could no longer juggle her responsibilities. Michelle left her job how to better advocate for their interests as consumers of home medical equipment and services. The panel included Eric Larson, executive director and CEO of National Spinal Cord Injury Association, Paul Tobin, president and CEO of United Spinal Association, Barbara Rogers, president and CEO of National Emphysema/COPD Association, Tracy Nasca, co-founder and senior VP, TalkAboutSleep.com, and Jeff Leonard with New Mobility magazine. Blackburn raised some critical questions to start the discussion. For instance: •

By Alexandra Bennewith, MPA, Senior Manager, Government Affairs; American Association for Homecare (AAHomecare)

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s part of Medtrade 2009 in Atlanta, the American Association for Homecare and Medtrade held the show’s first consumer advocacy panel session, which was moderated by Georgie Blackburn of BLACKBURN’s. The consumer advocates discussed a range of personal and policy issues related to Medicare, disabilities, and

Medicare covers durable medical equipment only if required within the home. Is that in concert with promoting optimal function and quality of life? Medicare policies have become so complex that physicians are electing to discontinue serving Medicare beneficiaries. How will the growing demand for care be met? Beneficiaries find there is an insufficient number of HME providers to handle service and repair requests. Do Medicare’s reimbursement methodologies reduce access to ongoing service? Would the government remove a beneficiary’s right to elect to purchase or

Resources TENS Alpha-Stim: www.alpha-stim.com Empi: www.empi.com Dynatronics: www.dynatronics.com RS Medical: www.rsmedical.com Zynex Medical: www.zynexmed.com SCS Consumer Support St. Jude Medical Neuromodulation: www.PowerOverYourPain.com or contact Michelle directly at Michelle.Revello@sjmneuro.com Medtronic: www.TameThePain.com Boston Scientific Neuromodulation: www.ControlYourPain.com and became a recipient of social security disability. Management of the pain should include a variety of options. For Michelle, she tried every option she could find; physical therapy, acupuncture and aquatics, to name a few. Her daily schedule turned into a dance of trade-offs to do only one major activity per day, such as grocery shopping or taking a shower. At age 37, she began to lose bowel and bladder control. That is when she decided to take the tumor out. She found Dr. Giancarlo Barolat at Thomas Jefferson University Hospital. He successfully extracted the tumor in her spine, but the pain did not go away with it. After researching her options, Michelle went back to her neurosurgeon, Dr. Barolat, to see if she was a candidate for SCS technology. Before getting the SCS implanted, there is a trial period. During the trial period, there are two percutaneous leads implanted into the spine with an external control unit. Michelle’s trial was for five days. She was not afraid of the trial but afraid that it would not work. “It was my last resort.” After the

trial, Michelle waited seven months before going ahead with the surgery. It was not due to insurance restrictions; as a Medicare recipient, she was eligible for coverage. She was hesitant due to her expectations of the system. “Now that I have my SCS, I have my life back.” After she realized that SCS is similar to a pacemaker for pain, she decided to get one. It worked. Now able to manage her pain and adjust the stimulation to her needs, life is no longer filled with tradeoffs. She can go grocery shopping, shower, and attend a school meeting all in one day without being limited by her pain. Passionate about this technology, Michelle started to volunteer her time to answer questions for other people who are considering SCS. “I would like to see the option of SCS move up the continuum of care. It should not be a last resort.” As the founder of the Ambassador Program at St. Jude Medical Neuromodulation, she is back to working full-time and managing 40 other volunteers across the US. To other people seeking options for treating chronic pain, Michelle encourages people to be informed consumers. “Knowledge is power,” advises Michelle. “Embrace the knowledge of your options to manage pain.” She encourages people to connect with those who have lived with pain. Any treatment options should be discussed with a professional trained in interventional pain medicine. Further information can be found in Part 1 and 2 of the Neurotechnology Fact Sheet available through the NSCIA website. The contents of this column were developed under a grant from the Department of Education, NIDRR grant number H133B080024. However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government.

rent by eliminating the first-month purchase option? Tracy Nasca was diagnosed with severe mixed sleep apnea at age 35. In her remarks to the audience, she spoke of the importance of consumers educating themselves about the equipment they need. Initially, Nasca was given the “choice” of having a tracheotomy or death. At the time, she was unaware of what equipment was appropriate for her. Ultimately, she received the correct bi-level mask, which will enable her to live a full, independent life. Barbara Rogers spoke of the need for providers and consumers working together. Consumers are entitled to a plan of care for their oxygen therapy, and consumers must speak up about that entitlement. Rogers asked, how can providers be expected to continue to provide the level of service and care that consumers deserve without having adequate reimbursement to provide that care? Tobin mentioned a range of issues that

Jeff Leonard And Eric Larson. affect his members, including the “in the home” restriction – Medicare’s policy that covers durable medical equipment only used in the home. The United Spinal Association advocates against this restrictive policy, a barrier to freedom and independence. Larson spoke of the need to retain an independent consumer voice and working with other consumer groups and providers to ensure the best education and advocacy resources for those in need. Following the session, all participants were invited to visit the exhibit hall to see the newest and most innovative mobility, respiratory and other home medical equipment products available.


Vol. 6, No. 5

in motion

Ricky James Captures Another Victory

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ollowing his domination this past July where rookie driver, Ricky James, stunned the competition by winning rounds 7 and 8 of the Lucas Oil Off Road Series in Lake Elsinore, CA., he did it again by taking the victory in Round 9 and a 2nd in Round 10 this past weekend in Surprise, AZ. James, the 21 year-old paraplegic race car driver from Murrieta, CA had somewhat of a roller-coaster weekend but once-again displayed his natural driving ability by placing his SoCal SuperTrucks Super Lite on the podium. After a mishap saw Ricky roll his vehicle during Friday’s qualifying, he still managed to pull through with the 2nd fastest time, meaning he would start in 7th position due to an inverted start. While the SoCal SuperTrucks crew was preparing the truck Friday night for Saturday’s race, they noticed some major engine issues, meaning Saturday’s race was doubtful for the team. Some quick work Saturday morning, and an engine loaned by fellow competitors Speed Technologies, got the truck race-ready just before the Super Lite start and James picked his way through the field, eventually taking the victory by a 25 truck-length margin. Sunday’s race looked to be a repeat of Saturday for Ricky, but a blown engine with 3 lap’s to-go and the fact he ran out of tearoff’s during the mandatory caution made things interesting. James led the race but,

Ricky James continues to excel in the world of Pro Trucking. JnL Photo.

with two lap’s to-go, was passed by Chad Leising. He was able to hold on to the 2nd place position. “I’m so proud of my crew this weekend”, said Ricky James. “ These guys worked so hard to get my SoCal SuperTrucks Super Lite ready for Saturday’s race and I’m happy to reward them with a victory. I want to thank Ryan and Bryan for wrenching tirelessly on the truck, Tom Morris from Wide Open Baja for setting the thing up amazing and, of course, Casey and Bill at SoCal SuperTrucks for having trust in me and giving me the opportunity. Also, my parents for making me a racer and continuing to support me. Casey Coughlin, co-owner of SoCal SuperTrucks added, I think Ricky’s motto, “Perseverance”, rang true for all of us this weekend. We were pretty sure we weren’t going to be racing Saturday morning and to end up with a victory is nothing short of amazing. We couldn’t of done it without the support and help of John Harrah and the crew at Speed Technologies. We had a tough weekend mechanically, but that’s racing and we are happy to walk away with a victory and 2nd place finish.” Ricky’s other accomplishments include, 2008 West Coast Pro Truck Champion, 2008 West Coast Pro Truck Rookie of the year, 2008 70.3 Ironman World Champion, 2008 X Games Adaptive Motocross Silver medalist, 2008 Challenge Athlete of the year, 2007 Baja 500 finisher. Ricky James is sponsored by SoCal SuperTrucks, K&N Filters, ICON Vehicle Dynamics, Racing Plus, Alpinestars, MasterShift, Oakley, and Total Power batteries. For more info, please check out www.socalsupertrucks.com and www.rickyjames824.com or contact SoCalSuperTrucks@NXTagency.com. Source: NXT Agency

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SoCal SuperTrucks helped James get ready for his race. JnL Photo.

The only way to GUARANTEE you receive every issue of SCILife is to subscribe! Only $15.00 for all six annual issues! Visit www.spinalcord.org/scilife

Ms. Wheelchair America... Continued from page 1

While networking with these accomplished women, I learned more about the possibilities that exist for outreach, opportunities of future collaboration of our efforts for a larger impact, and ways to overall improve the quality of life for those who use wheelchairs. During the course of the week we attended workshops on public speaking, team building, interviewing, self-defense, self-image, an accessible camp facility in the area, tips and accomplishments from former Ms. Wheelchair America 2009, and specific sections of the ADA Laws. In addition, we were privileged to hear a few keynote speakers during evening sessions. A more intense part of the week was daily judging sessions. Each day, at a designated time, we would individually be interviewed by the panel of five judges behind closed doors. I personally enjoyed getting to speak with the judges daily and appreciated their perspectives. I also enjoyed the additional cameras watching our every move. This is because a film crew was there making a documentary titled, “Defining Beauty: Ms. Wheelchair America”. I can’t wait to see this 85+ minute full-featured film next spring! Friday, August 28, 2009 was semi-formal attire and the evening was designed for each contestant to deliver her platform speech, and one last chance to prove to the panel of judges why we each deserve to be Ms. Wheelchair America 2010! Saturday, August 29, 2009…the big day, the day of final decisions! Contestants gathered in the morning for a long dress rehearsal…with-

out the dresses…then we were pampered by students from Paul Mitchell College who were flown in from Idaho, getting our hair and makeup done! Then off to our rooms for wardrobe change, before rushing down for backstage line up! And let the night begin! The Crowning Ceremony has begun, the emcee has warmed up the audience and now…drum roll please…the contestants of Ms. Wheelchair America 2010!! We were introduced individually as we rolled up on stage, then we stated our name, state and platform. I felt honored to have a couple speakers tell us how we’ve inspired them and then a woman dedicated two songs to us with her performance. The top five contestants were announced, additional awards were given, and then the final announcement, the one we’ve all been waiting for…the suspense was killing me…and the title of Ms. Wheelchair America 2010, goes to…Erika Bogan, from North Carolina!! Followed by hugs, tears, and pictures of course! What a great week! Not only did I learn about others, make new friends, and network, I also learned more about my own potential and possibilities of how I can help improve the lives of other wheelchair users! I would like to extend my personal gratitude to all those who made this year’s pageant possible. A special thanks to the National Spinal Cord Injury Association (NSCIA) for their involvement. This year, NSCIA was represented by two contestants Santina Muha of New Jersey, NSCIA’s Communications Associate, and of course, me. If you have any interest in being a contestant at next year’s national pageant, which will be held in California, please contact the Ms. Wheelchair America organization to connect with your state coordinator! Find them online at mswheelchairamerica.org.


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Vol. 6, No. 5

Wheel Be Ready: Emergency Preparedness and the Disability Community

Emily Munson represented Indiana in the Ms. Wheelchair America competition this August. Her platform focused on emergency preparedness and the disability community. During her reign, Munson worked with the Mayor’s Advisory Council on Disability on emergency preparedness planning. The Council’s relationships with the Red Cross, the Fire Department, and the disability community have permitted great opportunities for collaboration and progress. At a more grassroots level, she continues to distribute a pamphlet she prepared on disaster planning for people with disabilities at her various speaking engagements. Here now is Munson’s platform, in her own words:

By Emily Munson, Ms. Wheelchair Indiana 2009

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This is the first in a series of articles written by Ms. Wheelchair titleholders, sharing their experiences with their platforms and the work they have done to improve the lives of those living as wheelchair users. MWA contestant Emily Munson with Indianapolis Mayor Greg Ballard at a NOD event recognizing the city’s accessibility.

resource center

Spinal Cord Central. ‘Simply for you’ By Bill Fertig, Manager, Spinal Cord Central

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he jointly operated spinal cord injury and disease (SCI/D) resource center, Spinal Cord Central (SCC) combines the extensive geographical and subject area resources of both the National Spinal Cord Injury Association and United Spinal Association. Anyone who has experienced a life-altering spinal cord injury or spinal cord

ome of my earliest childhood memories are of VIP night at MDA Camp. Every year, well-intentioned firefighters would come to serve us dinner and share tips about fire safety. Unfortunately, the sum of their advice was often “stop, drop, and roll.” Like most of my fellow campers, I was about as likely to be harmed by this process as I would be by a fire! As I gained more experience, I realized that the failure to create emergency plans that consider and account for the needs of people with disabilities is endemic in our society. Studying bioethics in graduate school, I learned the disturbing reality that those with disabilities are frequently discriminated against in medical interactions, and that this practiced inequality is likely to cause severe discrepancies in treatment during emergencies. (More on this later.) But even those unversed in public health and medical protocols saw how people with disabilities were flooded with disproportionate amounts of discomfort and tragedy by Hurricane Katrina. Katrina washed away many facades, leaving Americans to face the facts. The particular fact that individuals with disabilities must accept is that they are in the best disease knows all too well how many areas of one’s life are affected. Spinal Cord Central and our team of information specialists can provide specific and insightful support as you navigate this vast spectrum of subject areas.

New Injury Knowledge Book of SCC

The challenging and sometimes foreign new journey into SCI/D is made much clearer by utilizing the ‘new injury’ Knowledge Book within SCC. The new injury Knowledge Book of SCC first provides direction about locating the appropriate SCI specific rehabilitation hospital in your area or helps you locate one that specializes in the type of SCI care needed. NSCIA member hospitals are among the leaders in these areas of care! The NSCIA ‘Insurance Guide’ and ‘Guidelines for Selecting a SCI Rehab Facility’ provide direction to assure a beneficial rehab experience. Once rehab

position to protect themselves from disaster. Two approaches are needed to secure greater safety in times of emergency; first, we need to become more active in policy formation and, second, we need to accept more personal responsibility in creating our preparedness plans. Because many policymakers – be they legislators or administrators – are not familiar with the needs of people with disabilities, laws and regulations often fail to take account of these needs. Consider a scenario in which an evacuation is mandated. Many people with disabilities either do not own a personal vehicle or may not be able to drive it. While the locality might provide public busses to aid evacuation efforts, there is no guarantee that these vehicles will be wheelchair-accessible. Another illustrative example of policymakers neglecting to be inclusive and pragmatic involves medication. Frequently-circulated emergency preparedness documents suggest that individuals keep a 30-day supply of medication on-hand. This advisory ignores the reality that many people with disabilities live on fixed incomes and cannot afford the advanced purchase of medication. Laws forbid those legally taking controlled substances to keep emergency doses in the event of emergency. And even if individuals do produce their 30-day supply to medical professionals at a shelter, there may not be a refrigerator for medications that require storage at cool temperatures or adequate safety to keep medications from being stolen. Alternatively, policymakers can exaggerate what they perceive as needs of the disability community, which can lead to segregation from the greater community in medical need facilities. These facilities have become popularized under the theory of “special needs populations,” that tries to ensure that those groups with extenuating circumstances are accounted for during has begun, one can then focus on new goals such as planning and funding of needed home modifications for the newly injured person who most often returns home from rehab as a wheelchair user. Financial assistance, family support and local resources are some of the more prominent resource pages of the ‘new injury’ Knowledge Book.

SCC is web based and interactive

Spinal Cord Central contains many subject area Knowledge Books in addition to that relating to a new injury. Specific books on a variety of health and wellness subjects as well as locating of doctors, advocacy resources and ventilator use are but a sampling of the available book topics. If you do not see the resource you need among the existing books, you can submit an information request form by email or call one of the SCC Information Specialists for that information. SCC is staffed by Information Specialists who have SCI’s themselves, as well as an SCI rehabilitation nurse and by a credentialed Social Worker experienced with SCI/D.

How to best use Spinal Cord Central

To best utilize the resources of SCC, first search the existing Knowledge Books for the resources you need by following the

emergencies. Unfortunately, this group also includes prisoners, and several emergency plans throughout the country do not indicate how those with disabilities will be kept safe if sheltered with convicts. As people with disabilities, we need to get involved in the policymaking process. We can lobby our representatives, and testify at hearings. We can run for office (“If you want it done right…”), or seek jobs in the public policy sphere. Even a simple letter expressing your own experiences can help educate the public. At the same time, we need to watch out for ourselves. We know our needs and routines better than anyone else, and are therefore in the best position to help ourselves. Before an emergency, we can meet with neighbors and friends to create feasible preparedness plans. We can practice concisely explaining our needs and the locations of vital equipment to first responders. We can know the law, so we are backed with authority when shelter personnel try to evict our guide dogs or medical professionals at hospitals try to give our ventilators to those with a “better quality of life.” There are no excuses. We have the same human rights as able-bodied people, as well as the same responsibilities. Can’t get to an interior bathroom or basement during a tornado? Put an empty garbage can over your upper body to protect it from debris. Still not an option? Have someone cover you with as many pillows and blankets as are available. Even those who are bedbound can create circumstances that promote personal safety. Remember that preparing for emergency can save your life, as well as the lives of those near you. Wheel be ready! For more information about Emily or emergency preparedness, visit www.emilymunson. com. book topic headings. Chapters of those books may already contain the information you seek. If you require more detailed information from an SCC Information Specialist, contact SCC staff by completing the information request form and an Information Specialist will promptly respond to your email. Include your location and phone number for best results. If you need even more timely assistance, have complicated and/or multiple questions or do not have internet access, you can still phone an Information Specialist.

Best of NSCIA and United Spinal

Spinal Cord Central web based resources, programs and Information Specialists provide the best resources and expertise of both organizations more than 120 years of combined SCI/D experience. Come and give SCC a ‘test drive’ through SCI/D resources from newer injuries to conquering conditions secondary to SCI/D educational and employment opportunities and beyond! Find the information and resources you need at www.spinalcordcentral.org, or contact an information specialist at help@spinalcordcentral.org or 800-962-9629 M-F, 8:30am - 5:00 pm (ET).


Vol. 6, No. 5

NeuroEDUCATOR 4

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Vol. 6, No. 5

board profile

Gretchen Fox By Santina Muha, Staff Writer

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SCIA board member Gretchen Fox has been working with spinal cord injury (SCI) for years, though she is not living with one herself. Fox’s clinical background as an OTR was in SCI rehabilitation in the only SCI CARF accredited program in Indiana. She says, “I still have that passion for persons with spinal cord injury. My current role at Rehabilitation Hospital of Indiana (RHI) is in marketing so I thought that combination of marketing knowledge with my clinical expertise in SCI might be a good fit for serving on the NSCIA board.” Fox first became affiliated with NSCIA through fellow board member Janeen Earwood. “In her role as program director of the RHI Spinal Cord Injury Program,” says Fox, “Janeen hired me and had the confidence in me to teach me from knowing nothing about the diagnosis and treatment to developing clinical expertise.” Although she has familiarized herself with the world of SCI over the years, Fox is still learning. Over the past year with NSCIA, Fox notes, “As a clinician I did not really touch or have interest in the political

side of SCI/D. For better or worse, I have learned about this area during my time with NSCIA.” “I’ve known and trusted Janeen (Earwood) for years, so when she said she was bringing someone up as a candidate to serve on our board, frankly my expectations were high,” said K. Eric Larson, NSCIA’s executive director and CEO. “And I was not disappointed. Even after just a year, Gretchen’s really demonstrated some great insights and a true commitment to our organization and our members.” According to Fox, the key to achieving a high quality of life following the onset of an SCI or other significant disability is quality education up front, partnered with rehab with experience in SCI. Fox explains, “Too many folks do not know the difference between rehab and rehab focused on SCI, and are unfortunately going to places that just do not see enough people with SCI to gain that type of experience.” She goes on, “It’s also important to make lifelong connections to that individual for questions and complications that may occur over time.” Over the years, Fox has many achievements of which to be proud, both professionally and personally. “I have been afforded great opportunities to excel at RHI. I was given the opportunity to open a 20 bed rehab unit and then run it until it was closed three years later.” In her personal life, Fox is raising two children, Nick, 12 and Sydney, 9, who she describes as amazing and awesome. She says, “Both challenge me and encourage

me to grow almost every day.” While each of her children stays active in extracurricular activities, Nick in football, swimming and wrestling, as well as playing in the band, and Sydney in soccer, softball and swimming, as well as the Girl Scouts, Fox says she enjoys watching them compete and trying new things. “When not at a sporting event, we love to fish,

swim, hike and visit with friends and family or travel.” When not hanging out with her children, what Fox calls “Mom Days,” she says she loves visiting with friends and enjoying a great glass of wine with a nice dinner out. Fox has some extracurricular activities of her own, and enjoys following the Indy Racing League and attends several races every year. An avid football fan, Fox says, “I love every level of football from middle school to NFL.” She also enjoys wine tasting and swimming. With all of this, Fox still spends a large amount of her free time volunteering. Besides volunteering on the NSCIA board, she also donates her time to the RHI Sports Program Board and the University of Indianapolis Alumni Board. In addition to that, Fox says, “I volunteer for many special events each year ranging from Sam Schmidt Paralysis Foundation to the ALS walk.” She adds, “And my kids volunteer too!” The family also finds time to get away from it all. Fox says, “One of my favorite vacations every year is taking my kids with my parents to our family cabin in Canada. It is remote with access only by boat. We have no running water so we use an outhouse and bathe in the lake. There is no internet access and rare cell coverage. It is the best and most beautiful vacation ever.” Fox notes, “I am a pretty good fisherwoman too!”

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Vol. 6, No. 5

health Aging Well with Spinal Cord Injury: Addressing Psychological Factors for Sleep Problems By researchers at the University of Washington’s Aging Rehabilitation Research and Training Center

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ike the physical issues related to sleep problems and the ways to address them discussed in our last column, there are also ways to deal with psychological factors that can contribute to sleep problems. The most common psychological factors that can interfere with sleep are anxiety, depression, and repetitive, worrying thoughts at night. These issues can either keep you from falling asleep in the first place, or prevent you from falling back to sleep if you wake up in the middle of the night. If your sleep problems are due to psychological factors, the first step is to identify what type of issue might be interfering with your sleep, and then you will know more about how to address that issue. Anxiety can cause you to have problems falling asleep at the beginning of the night.

If that is the type of sleep problem you are experiencing, you may want to talk to your doctor or another healthcare provider to learn more about anxiety and ways to combat it. We have provided here a few ways to address anxiety that may help you get a better night’s sleep. 1. Regular aerobic exercise can help with anxiety. Daily aerobic exercise is a great way to address sleep problems, but even exercising less often than this can help. Aerobic exercise can result in a physiological and psychological state of calm (a “good” kind of tired) due to the chemicals released in the body during exercise. This in turn helps create a better physiological and psychological state for sleeping. Exercise can be more difficult with SCI, but there are resources at the National Center on Physical Activity website (www.ncpad. org), including videos and routines, that can help. 2. Counseling (in particular, Cognitive Behavioral Therapy) can also help with sleep problems caused by anxiety. This type of therapy helps people to learn to avoid negative thinking during the quiet time before drifting off to sleep. 3. Self-hypnosis can also help. This involves training the mind to think calming thoughts and imaging calming images as a way to avoid anxious thoughts or repetitive worrying. It takes some training and practice, but many people find that self-hypnosis helps them to relax and get a better night’s sleep. 4. Keeping a journal is another way to help prevent anxiety from causing sleep

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problems. The strategy involves setting aside 5-15 minutes every day, earlier in the day, to write down problems you might be anxious about and come up with strategies for dealing with those problems. Some people find that a structured approach like this is helpful, while others find writing “stream of consciousness” style most effective. Then, at night, if thoughts about the things you have written down in your journal enter your mind, you can just tell yourself, “There is a time to think about these issues, and THIS is not that time. NOW, it is time to think reassuring thoughts.” You can tell yourself that you can address anything you are thinking about that is causing you worries the next day during your appointed journaling time, and allow yourself to experience reassuring images. 5. Avoid “anti-anxiety” medications like Xanax and Valium, which can in fact increase anxiety over time. This happens because the body becomes tolerant to these drugs. The effect of the drugs can also wear off at night and end up keeping you up or give you difficulties falling back to sleep if you wake up in the middle of the night.

Here are some ways to help alleviate depression that may be resulting in sleeping problems: 1. The first solution for sleep problems caused by depression is to treat the depression itself appropriately. This treatment can include cognitive behavioral therapy and anti-depressants. Both of these treatments are effective, and both together have been shown to be more effective than either alone (although cognitive behavioral therapy has been shown to have greater long-term benefits than anti-depressants alone). 2. As with sleep problems related to anxiety, regular aerobic exercise also helps with depression. Exercise has been found to be an effective anti-depressant. 3. Another way to address sleep problems related to depression is to schedule pleasurable activities daily as a way to improve depression. This can help with the negative feelings associated with depression and can result in better sleep.

Depression is another psychological factor that can contribute to sleep problems, and often results in waking up early and not being able to fall back to sleep. If you think you may be depressed, talk to your doctor or another healthcare provider about the best treatment for you.

The contents of this column were developed under a grant from the Department of Education, NIDRR grant number H133B080024. However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government.

While this is just a start for addressing sleep problems caused by psychological factors, these tips may help you get some more rest in the long run.

Hospital Members of NSCIA In addition to our more than 23,000 individual members, NSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people with spinal cord injury and disorders. Visit www.spinalcord.org for a full list of Hospital Members with links to their web sites, and information on how your hospital can join NSCIA. Alabama UAB Model Spinal Cord Injury Care System-Spain rehabilitation Center Birmingham, AL (205) 934-3283 California Northridge Hospital Medical Center Northridge, CA (818) 885-8500 Ext. 3669

Pinecrest Rehabilitation Hospital (CARF) Delray Beach, FL (561) 495-0400 Georgia Georgia Regional Spinal Cord Injury Care System-Shepherd Center, Inc. Atlanta, GA (404) 350-7591

Regional SCI Care System of Southern California Rancho Los Amigos Downey CA (582) 401-7111

Illinois Memorial Medical Center. Neuromuscular Sciences & Orthopedic Services Springfield, IL 217-788-3000

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

Indiana Rehabilitation Hospital of Indiana Indianapolis, IN 317-329-2000

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

Louisiana Healthsouth Rehab Hospital of Baton Rouge Baton Rouge, LA (225) 927-0567

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

Tulane Inpatient Rehabilitation Center Metairie, LA (504) 988-5800 Kentucky Cardinal Hill Rehabilitation Hospital Lexington, KY (859) 254-5701

Maryland Adventist Rehabilitation Hospital of Maryland Rockville, MD (240) 864-6000 Michigan University of Michigan Model Spinal Cord Injury Care System Ann Arbor, MI (734) 763-0971 Minnesota North Memorial Medical Center Robbinsdale, MN (763) 520-5200 Missouri The Rehabilitation Institute of Kansas City Kansas City, MO (816) 751-7900 Nebraska Madonna Rehabilitation Hospital Lincoln, NE (402) 486-8296 Immanuel Rehabilitation Center Omaha, NE (402) 572-2121 New Jersey Northern New Jersey Spinal Cord Injury System Kessler Institute for Rehab West Orange, NJ (973) 243-6849

New York Mount Sinai Spinal Cord Injury Model System New York, NY (212) 659-8587 North Carolina Moses Cone Health System Greensboro, NC (336) 832-7000 Carolinas Rehabilitation Charlotte, NC (704) 355-4300 Ohio Northeast Ohio Regional Spinal Cord Injury System Cleveland, OH (216) 778-8781 Pennsylvania University of Pittsburgh Model Center on Spinal Cord Injury Pittsburgh, PA (412) 586-6941 The Williamsport Hospital and Medical Center Gibson Rehabilitation Center Williamsport, PA. (570) 321-1000 South Carolina Healthsouth Rehabilitation Hospital Columbia, SC (803) 254-7777

TEXAS Baylor Institute for Rehabilitation Dallas, TX. (800) 422-9567 TIRR Memorial Hermann (The Institute for Rehabilitation and Research) Houston, TX (713) 799-5000 Virginia Inova Mount Vernon Hospital Alexandria, VA 703-664-7592 Woodrow Wilson Rehab Center Fishersville, VA (800) 345-9972 Wisconsin Froedert Memorial Lutheran Hospital Milwaukee, WI (414) 805-3000 Organizational Members of NSCIA

Florida SCI Resource Center Tampa, FL (800) 995-8544 Project Walk Carlsbad, CA Phone: (760) 431-9789 Push to Walk Bloomingdale, NJ (973) 291-6370 Quest to Walk Overland Park, KS (913) 451-1500


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Vol. 6, No. 5

NSCIA Chapter & Support Group network ARIZONA Support Groups East Valley Support Group (COMPASS) Phone: (602) 241-1006 Contact: Pauline Staples E-mail: plstaples@msn.com Flagstaff Support Group Phone: (928) 527-8567 Contact: Al White Grupo de apoyo en Español Gentiva Rehab Without Walls, 7227 N 16th St #107, Phoenix, Arizona Phone: (602) 943-1012 Contact: Diane Prescott Support Group Phone: (623) 209-0311 Contact: Gary Hershey SCI Women Support Group Banner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307 Contact: Jill Greenlee, CTRS CALIFORNIA CHAPTER WYNGS, NSCIA 7900 Nelson Rd., Panorama City, California, 91402 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano Website: www.wyngs.org E-mail: wyngs4sci@msn.com Support Groups Southern California SCI Support Group Casa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, California, 91769 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano, WYNGS Email: wyngs4sci@msn.com Leon S. Peter’s Rehabilitation Center P.O. Box 1232, Fresno, California, 93715 Phone: (559) 459-6000 Ext. 5783 Contact: Ray Greenberg E-mail: rgreenberg@communitymedical.org CONNECTICUT CHAPTER Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, Connecticut, 6492 Phone: (203) 284-1045 Contact: Jeff Dion Website: www.sciact.org E-mail: nscia@sciact.org DISTRICT OF COLUMBIA CHAPTER SCI Network of Metropolitan Washington, NSCIA Attn: SCIN, 14 Wolf Drive, Silver Spring, Maryland, 20904 Phone: (240) 429-6141 Contact: Kimball Gray E-mail: kimballg@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 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 Pinecrest Rehabilitation Hospital Spinal Cord Education Group 5360 Linton Blvd., Del Ray, Florida, 33484 Phone: (561) 495-3048 Contact: Mary Kaye Email: Mary.kaye@tenethealth.com Phone: (561) 495-3636 Contact: Christine Grant Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, Florida, 32308 Phone: (850) 656-4800 Contact: JoAnna Rodgers-Green Florida Rehab. and Sports Medicine 5165 Adanson St., Orlando, Florida, 32804 Phone: (407) 823-2967 Contact: Robin Kohn Email: rkohn@mail.ucf.edu Phone : (407) 623-1070 Contact: Carl Miller HEALTHSOUTH - Support Group 90 Clearwater Largo Rd., Largo,

Florida, 33770 Phone: (727) 588-1866 Contact Vicki Yasova Tampa General Hospital SCI Support Group 2 Columbia Dr., Tampa, Florida, 33601 Phone: (800) 995-8544 GEORGIA Support Groups Columbus SCI Support Group Phone: (703) 322-9039 Contact: Ramona Cost E-mail: rvcost@mchsi.com Central Central GA Rehab Hospital 3351 Northside Dr., Macon, Georgia, 31210 Phone: (800) 491-3550 Ext. 643 Fax: (478) 477-6223 Contact: Kathy Combs ILLINOIS CHAPTER Spinal Cord Injury Association of Illinois 1032 South LaGrange Road, LaGrange, Illinois, 60525 Phone: (708) 352-6223 Fax: (708) 352-9065 Contact: Mercedes Rauen Website: www.sci-illinois.org E-mail: SCIInjury@aol.com INDIANA Support GroupS 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: Angie Plager Phone: (515) 554-9759 Email: SCIAofIowa@hotmail.com Kansas CHAPTERS Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: Linda.Klaiber@healthsouth.com Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: Linda.Klaiber@healthsouth.com KENTUCKY CHAPTER Derby City Area Chapter, NSCIA 305 W. Broadway, Louisville, Kentuky, 40202 Phone: (502) 588-8574 Contact: David Allgood, President Website: www.derbycityspinalcord.org E-mail: david.allgood@amerihealthmercy.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 MARYLAND Support Group Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, Maryland, 21207 Phone: (410) 448-6307 Contact: Jenny Johnson Website: www.kernan.org/kernan/ MASSACHUSETTS CHAPTER Greater Boston Chapter, NSCIA New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 01801 Phone: (781) 933-8666 Fax: (781) 933-0043 Contact: Kevin Gibson Website: www.sciboston.com E-mail: sciboston@aol.com

SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, Massachusetts Phone: (617) 414-5000 Website: www.sciboston.com/support.htm Spaulding Support/Discussion Group 125 Nashua Street, Boston, Massachusetts Phone: (857) 222-5123 Contact: Betsy Pillsbury Website: sciboston.com/support.htm Whittier Westborough Support Group 150 Flanders Road, Westborough, Massachusetts Phone: (508) 871-2000 Ext. x2165 Contact: Deb Website: sciboston.com/support.htm Michigan CHAPTER MSCIA 1938 Woodshee Drive, Troy, Michigan 48083 Phone: (248) 288-2270 Contact: Stacey Murphy E-mail: smurphy@americaremedical.com MISSISSIPPI Support Group Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, Mississippi, 39532 Phone: (601) 969-4009 Contact: Michelle Bahret Website: www.lifeofms.com Email: mbahret@yahoo.com MISSOURI CHAPTER Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: Linda.Klaiber@healthsouth.com 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 21 Chenell Drive, Concord, NH 03053 Phone: (603) 216-3920 Fax: (603) 432-1549 Contact: Debbie Krider E-mail: debbie@gsil.org Website: www.nhspinal.org NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Phone: (585) 275-6097 Contact: Karen Genett E-mail: rochesternscia@yahoo.com Phone: (585) 275-6347 Contact: Amy Scaramuzzino E-mail: ascaramu@frontiernet.net New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine Attn: James Cesario 1 Gustave L. Levy Place, Box 1240 New York, New York, 10029 Phone: (212) 659-9369 Fax: (212) 348-5901 Contact: James Cesario or John Moynihan Website: www.nycspinal.org E-mail: NYCspinal@NYCspinal.org Support GroupS SCI Network of Central New York ARISE, 635 James Street, Syracuse, New York, 13203 Phone: (315) 464-2337 Fax: (315) 464-2305 Contact: Tammy Bartoszek E-mail: bartoszt@upstate.edu Phone: (315) 247-0927 Contact: Maria Froio E-mail: scin4cny@yahoo.com

Long Island Spinal Cord Injury Phone: (631) 221-9255 Contact: Ron Quartararo Website: www.testaverdefund.org E-mail: info@testaverdefund.org NORTH CAROLINA CHAPTER NCSCIA 3701 Wake Forest Rd., Raleigh, North Carolina, 27609 Phone: (919) 350-4172 Contact: Deborah Myers E-mail: dmyers8@triad.rr.com Contact: Karen Vasquez E-mail: kvasquez@wakemed.org OHIO CHAPTERS Northwest Ohio Chapter, NSCIA 13745 Archbold Whitehouse Rd Swanton, Ohio 43558 Phone: (419) 875-4029 Contact: Hank Burney, President Website: www.nwonscia.org E-mail: bjbiii77@windstream.net Phone: (419) 531-6401 Contact: Becky Gay E-mail: beckkevn1@aol.com Northeast Ohio Chapter, NSCIA c/o Jeff Schiemann, PO Box 934 Chesterland, Ohio 44026 Phone: (440) 442-5550 Fax: (440) 442-5789 Contact: Jeff Schiemann E-mail: jjscpajd@aol.com Website: www.metrohealth.org/NORSCIS Support Group Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, Ohio, 44484 Phone: (330) 841-3856 Contact: Rebecca Lebron E-mail: rlebron@forumhealth.org Phone: (330) 889-2158 Contact: Rick Ackerman E-mail: bird196@aol.com PENNSYLVANIA Support GroupS Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, Pennsylvania, 16602 Phone: (800) 873-4220 Greater Pittsburgh Rehabilitation Hospital 2380 McGinley Rd., Monroeville, Pennsylvania, 15146 Phone: (800) 695-4774 Contact: Kristy Nauman E-mail: kristy.nauman@healthsouth.com Delaware Valley SCIA 2610 Belmont Ave., Philadelphia, Pennsylvania, 19131 Phone: (215) 477-4946 Contact: Bruce McElrath Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, Pennsylvania, 19102 Phone: (215) 587-3174 Fax: (215) 568-3736 Contact: Marie Protesto Website: www.mageepeers.org Rehabilitation Hospital of York 1850 Normandie Dr., York, Pennsylvania, 17404 Phone: (800) 752-9675 Ext. 720 Phone: (717) 767-6941 Contact: Tammy Derk E-mail: tammy.derk@healthsouth.com SOUTH CAROLINA CHAPTER SCSCIA 2935 Colonial Drive, Columbia, SC 29203 Phone: (866) 445-5509 Phone: (803) 252-2198 Contact: Diane Epperly, Executive Director E-mail: scscia@att.net Contact: Rafe Ellisor, Chairman E-mail: rafe.ellisor@healthsouth.com Website: www.scspinalcord.org Support GroupS Chester Area SCI Support Group Purity Presbyterian Church on 135 Wylie Street, Chester, South Carolina, Phone: (803) 482-4389 Contact: Lee Carter E-mail: llctcarter@truvista.net Florence, SC Area Support Group Phone: (843) 679-9932 Contact: Ronnie McFadden E-mail: ronnielmc@yahoo.com

Greenville Spinal Cord Injury Support Group 343 Malone Rd., Honea Path, South Carolina, 29654 Phone: (864) 369-2791 Contact: Byron Armentrout E-mail: baja19@peoplepc.com North Charleston SCI Support Group 172 Bayboro Circle, Goose Creek, South Carolina, 29445 Phone: (843) 863-1165 Contact: Ruth Jones Phone: (843) 792-2605 Contact: Richard Aust E-mail: aust@musc.edu Orangeburg, SC Area Support Group Phone: (803) 829-2043 Contact: Rebecca Felder E-mail: oburgscisupport@peoplepc.com Spartanburg, SC Area Support Group 101 St. Matthews Lane, Spartanburg, South Carolina, 29301 Phone: (864) 595-1947 Contact: Dot Colson E-mail: DColson@Dennys.com York/Rock Hill Area Support Group Phone: (803) 366-5659 Contact: Bob Alders E-mail: bobcatawba@comporium.net Tennessee CHAPTER Tennessee Spinal Cord Injury Association (TSCIA) 105 Ballentrae Drive, Hendersonville, TN 37075 Phone: (615) 947-6204 Contact: Cheryl Stowe, Executive Director E-mail: cherlystowe@yahoo.com Website: www.standuptn.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 Spinal Cord Injury Association of Virginia P.O. Box 8326 Richmond, VA. 23226 Phone: (804)726-4990 Fax: (888) 752-7857 Contact: Steve Fetrow Email: steve.fetrow@sciava.org Website: www.sciava.org WASHINGTON Support Group SCI Forum University of Washington Medical Center Cafeteria Conference Room B/C 1959 NE Pacific St, Seattle, Washington 98195 Phone: (206) 685-3999 Contact: Cynthia Salzman E-mail: Csalzman@u.washington.edu WEST VIRGINIA Support Group West Virginia Mountaineer Support Group P.O. Box 1004, Institute, West Virginia, 25112 Phone: (304) 766-4751(W) Fax: (304) 766-4849 Contact: Steve Hill E-mail: steveh@mail.drs.state.wv.us WISCONSIN CHAPTER NSCIA Southeastern Wisconsin 1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215 Phone: (414) 384-4022 Fax: (414) 384-7820 Contact: NSCIA-SWC Office E-mail: office@spinalcordwi.org Contact: John Dziewa E-mail: president@spinalcordwi.org Website: www.spinalcordwi.org

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


September/October 2007

6

Vol. 6, No. 5

THE NATIONAL SPINAL CORD INJURY ASSOCIATION The National Spinal Cord Injury Association (NSCIA) is a non-profit membership organization for people with spinal cord injuries, diseases and dysfunction, their families, their related service providers, policy makers, organizations, hospitals and others interested in the issues affecting the spinal cord injury community. Our mission is to enable people with spinal cord injuries, diseases and dysfunction to achieve their highest level of independence, health and personal fulfillment by providing resources, services and peer support.

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cut out & return

17

Join Us at NSCIA’s 3rd Annual Spinal Cord Injury (SCI) Hall of Fame Gala

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SCIA will celebrate 14 new inductees and an emerging leader at the 3rd annual Spinal Cord Injury (SCI) Hall of Fame gala and induction ceremony on the evening of Tuesday, Nov. 6, at the John F. Kennedy Center for the Performing Arts in Washington, D.C. in recognition of the accomplishments of people with SCI and those committed to their quality of life. Once again, NSCIA will be host to a performance on the Millennium Stage, followed by the 2007 induction ceremony and a dessert reception in the Roof Terrace Restaurant. Nashville based singer/songwriter JP Williams will perform on the Millennium Stage, and award-winning journalist, Leon Harris will emcee the event. Hosted last year by inaugural SCI Hall of Fame member and former Dateline NBC correspondent John Hockenberry, this black tie optional celebration is attended by business professionals, government officials from a variety of departments including the U.S. Departments of Health and Human Services, Labor, Justice, Education, Housing and Urban Development and the Social Security and Veterans Administrations, healthcare providers, media 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.

This year’s categories include Assistive Technology, Benefactor, Corporate Executive, Disability Activist, Disability Educator, Entertainment, Entrepreneur, Government Executive, Grassroots Organizer, Legislative, Media, Research in Basic Science, Research in Quality of Life, and Sports. In addition, NSCIA will award an “Emerging Leader,” a special award which was introduced last year in conjunction with the 2006 SCI Hall of Fame. The process began in August when NSCIA called for nominations. Far exceeding last year’s nominations by almost 50 stellar nominees, NSCIA has received more than 165 qualified nominees! These nominees were voted on by NSCIA members and reviewed by a selection committee to ratify the voting. One nominee from each category will be inducted and celebrated at the gala. Formed by NSCIA in 2005, the SCI Hall of Fame was created to celebrate and honor individuals and organizations that have made significant contributions to quality of life and advancements toward a better future for all individuals with spinal cord injury 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. 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 in 35 stateshelmet, collect thevehicle compensation product or cord useinjured of a persons product (e.g. eventhey if deserve. 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:

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18

Vol. 6, No. 5

community living A Physical Therapist’s Perspective of Community Integration By Debra Glazer, PT, MPH

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mong the recent developments in healthcare are shorter inpatient hospital stays, limited personal resources, and increasing health care costs. “There is a need for long term psychosocial treatment, rehabilitation and support that addresses quality of life, functional skills and accessing environmental supports.” So, what becomes of the individual after they have completed their approved course in the medical system and rehabilitation has ended according to their insurance benefits? Specifically, what happens to the individual after a life changing medical event occurs; or to the individual who has ongoing multiple medical or chronic conditions that require extended care? Does the existing medical system or current array of rehabilitation services assist individuals with reentering their community? There are a number of factors that contribute to successful community integration and many that impede this transition. This paper will highlight a few of these barriers including the lack of an individualized rehabilitation system, the initial hospitalization process, and the current medical model of care. As patients and their families anticipate being discharged from the medical system, many questions arise: What will come next? How will they pay for all of the care with limited resources? How will members in our peer group react and treat us? After discharge, individuals with a new disability often experience “loneliness, over-dependence on service providers and families, and discomfort being around others.” Often patients and families are overwhelmed with the recovery process and are still grieving for life as they once knew it. Factors such as one’s coping techniques prior to their injury, opinions on personal responsibility, prior medical background, insurance plan, and whether or not the individual has a good personal support network of friends and family impact the success of a full return to community life. Unfortunately, the rehabilitation system as it is set up today does not allow practitioners to account for individual differences. Too often, rehabilitation programs are structured in such a way to work against this process of recovery. These programs tend to have rigid guidelines for acceptance. They tend to have linear program designs in which a person must enter at point “A” and move through a series of consecutive steps to arrive at point “B”. This kind of system does not allow for individuals to “try and fail, and try again”, which is necessary for ultimate recovery and successful re-entry into one’s community. In addition to an expanded and more individualized rehabilitation system, what else is needed to better prepare persons for reentering the community? An improved understanding of an individual’s initial hospital course is necessary to provide needed insight

regarding the direct affect that this experience has on the person’s ultimate recovery. The majority of one’s hospital stay in today’s healthcare climate is devoted to diagnosis, reduction of symptoms, crisis management, and discharge planning. There is very little time dedicated to true rehabilitation services or psychological support. Nurses are being asked to do more and more and often have less time to provide a friendly ear to listen to their patient’s fears and concerns. Social workers are often only available for acute crisis management (i.e., those who are suicidal) and usually have such large caseloads that they themselves are often overwhelmed with the demand for their services. All of the recent changes have an impact on preparing the person for what comes next. Offering support services to newly disabled individuals that help give them some sense of control in an out of control situation is not only therapeutic, but also a necessary part of the healing process. Unfortunately, in the current ambiance of cost-cutting and managed care, this often is missing in most rehabilitation programs. Preparing a person for the long road of rehabilitation requires understanding and support from the medical community. True, rehabilitation focuses on restoration and the enhancement of coping skills, improving one’s quality of life, and the expectation of recovery. In standard rehabilitation programs, the role of the healthcare professional is actually de-emphasized and the burden is shifted to the individual in favor of personal autonomy and responsibility. A common theme in hospital settings these days are rehabilitation standards of care or “protocols”. These “road maps” help create a multidisciplinary, collaborative treatment plan that are often helpful to the healthcare professional, but too often “dismiss individual preferences, needs, and goals.” Another important factor in preparing a person for rehabilitation and community reentry is the ability of healthcare providers to answer questions about available community services. Many healthcare professionals, especially those in the hospital setting, are unaware of what resources are available in the community and are often unaware of what barriers their patients may face after they are discharged back into their communities. In a study titled, “Barriers to Access: Frustrations of People Who Use a Wheelchair for FullTime Mobility,” all of the participants had feelings of frustration concerning access, independence, and attitudes of others toward people with disabilities, including medical professionals. One participant in the study stated, “I don’t ever remember anybody talking with me about the problem of being in a wheelchair and getting around.” While in the hospital, the priority is obviously to medically stabilize the patient, but healthcare professionals often miss the opportunity to provide success stories of previous patients that have gone on to live successful lives in the community. These stories are critical in creating hope in patients during a very difficult phase of their recovery. In looking past the initial hospitalization, another suggested improvement is identifying how our current medical model of care prevents us from looking at the individual first and the disease process second. “This disease model is limited in that many health conditions cannot be traced to a specific disease, and the same disease could have different symptoms in different patients. Health care

providers, including rehabilitation professionals, are reluctant to treat symptoms without a diagnostic label. The reality is that in the current medical system, reimbursement incentives and one’s individual insurance plan often dictate what type of treatment the person will receive. If services do not correlate with the specified diagnostic code, the provider risks not being reimbursed. Dr. Mary Tinetti, an international expert on the effects of falls in the elderly and on home-based rehabilitation for older adults, proposed a new alternative model of care. She is encouraging health care providers to look at the “complex interaction among genetic, lifestyle, cognitive, environmental, cultural, and psychosocial factors when diagnosing a patient”. She notes that lifestyle-related issues such as exercise and diet clearly play a major role in the treatment plan for newly disabled individuals. This alternative model of care would require a change in the current reimbursement system. Providing education about necessary lifestyle changes is not enough to keep an individual enrolled in a skilled rehabilitation program, and therefore many patients re-enter the community prematurely. The majority of rehabilitation professionals are extremely strong patient advocates, but are often faced with conflicting pressures about productivity, reimbursement from third party payers, and detailed regulations by agencies such as Medicare, JCAHO, HCFA, and OSHA. These governing bodies serve as watchdogs to the medical industry to prevent harm and misconduct to the patients, as well as to expose fraudulent health care providers. More often than not, individuals who do not clearly fit into the medical model dictated by these existing organizations or who cannot advocate for themselves often fall through the cracks of this system. This system was designed to work well for the patient with a straightforward diagnoses such as a hip fracture. These patients usually move smoothly through our system. However, the current system does not work as well with patients who have multiple issues such as a patient with a hip fracture who is also paraplegic. Physical therapists as well as other rehabilitation professionals are constantly forced to discharge patients from the medical system because the individuals no longer meet the stringent and rigid criteria of these governing bodies or reimbursement organizations. Discharging patients under these circumstances does not adequately reflect whether or not the patient has met their personal goals. Instead, it reflects a model of care dictating specific treatment based on a diagnoses instead of allowing the individual and health care professional to make these decisions based on the actual needs and wishes of the patient. An example of this disconnect is seen with the need to educate and inform patients about existing exercise and recreational programs within the community. “Health promotion activities are critical for people with disabilities who are prone to have a more sedentary lifestyle and have a tendency for under, over, or misuse of various muscle groups.” Enrolling in some sort of exercise program or recreational activity is just as important for some patients leaving the medical system as taking their prescribed daily medication. The need of patients to participate in fitness programs is often overlooked by the current medical model, especially for individuals

with specific disabilities. “Often exercise regimens are recommended for discharged patients as a way to maintain gains during treatment and not as an avenue of fitness.” The majority of patients leave the medical system with few resources and little guidance about what recreational programs and community services are available within their community and are left to research available programs on their own. This trend is unfortunate because “participating in recreation activities has been found to be an important factor in successful community adjustment.” “The laws have paved the way for people with disabilities to live, learn, work, and recreate in settings alongside peers without disabilities,” but the links between the traditional medical system, rehabilitation services and the community are fragmented or have yet to be built at all. Ultimately, we as rehab professionals provide a strong foundation and necessary structure to our patient’s lives when everything seems to be out of control. We offer guidance and assist them through the initial phase of recovery, but often we do not provide effective connections that lead our patients back to life as unique and successful individuals within their own communities. The information provided here is offered as a service only. The National Center on Physical Activity and Disability, University of Illinois at Chicago, the National Center on Accessibility, and the Rehabilitation Institute of Chicago do not formally recommend or endorse the equipment listed. As with any products or services, consumers should investigate and determine on their own which equipment best fits their needs and budget.

Magazines 1.

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3. 4.

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Bullock,C. & Luken, K. Reintegration through recreation: A community-based rehabilitation model. In S.E. Iso-Ahola & D. Compton. Leisure in Mental Health (1994). pp 215-233. Pierce, L. L. Barriers to Access: Frustrations of People Who Use a Wheelchair for Full-Time Mobility. Rehabilitation Nursing (1998). 120- 125. Keith, R. A. Comprehensive Rehabilitation: Themes, Models, and Issues. Medical Aspects of Disability (1999). p. 22. Deegan, P. (1999-01-01). Recovery: The Lived Experience of Rehabilitation. In R. Marinelli & A. Dell Orto. The Psychological & Social Impact of Disability (1991). pp4754. Stuart J. Schlein, M. Tipton Ray, Frederick P. Green, Stuart J. Schleien. (1998-08-01). Community Recreation and People with Disabilities. In Community Recreation and People with Disabilities. Strategies for Inclusion (1997). p.1,2.

Proceedings

1. Compendium, Sargent College of Health and Rehabilitation Services. (2001-2002, winter). Treating the Patient and Not the Disease. This fact sheet was last updated on 12-21-2005. This copyrighted article is reproduced from the National Center on Physical Activity and Disability at www.ncpad.org. It may be freely distributed in its entirety as long as it includes this notice but cannot be edited, modified, or otherwise altered without the express written permission of NCPAD. Contact NCPAD at 1-800-900-8086 for additional details.


Vol. 6, No. 5

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Photos courtesy of Hans Gutknecht

Kristina Ripatti: Getting back in the game. On June 3, 2006, Kristina Ripatti, a 33-year-old, Los Angeles Police Department (LAPD) officer, was shot twice and critically wounded while chasing an armed robbery suspect. The injuries (T2 complete) paralyzed the ten-year LAPD veteran from chest down. “Following my injury, I was looking for something to replace running so that I could get a good cardio workout. The NuStep has been great! My trainer designed a workout for me using the NuStep on a daily basis, so that I can get cardio workouts in again. I highly recommend using the NuStep machine.�

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Vol. 6, No. 5

Self-Cath®

Trusted for over 30 years

April 1, 2008, Medicare changed coverage for intermittent catheter users. For more information visit www.coloplastmedicare.com

Did you know that you can now receive single-use Self-Cath® intermittent catheters? To receive single-use Self-Cath® intermittent catheters

Bring this page to your prescriber and do the following: Ask your healthcare provider for Self-Cath® brand intermittent catheters. Discuss increasing the number of catheters you are currently receiving. You and your provider can determine the number that is right for you. Get a new prescription from your healthcare provider and take it to your medical supplier. If you do not have a medical supplier or are having difficulty receiving Coloplast Self-Cath® intermittent catheters, please call our help line at 800-525-8161. Make sure your prescription says Self-Cath®.

For the Prescriber: A new prescription is required to increase utilization. The following must be documented: 1.

PERMANENT CONDITION: The patient must have a permanent impairment of urination or an undetermined time period of more than 90 days.

2.

COMMON DIAGNOSIS CODES: 788.20 (Retention of Urine) or 788.30 (Urinary Incontinence, Unspecified).

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FREQUENCY: Document the number of times a day/week/month the patient is cathing. This must match what’s listed on plan of care.

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BRAND NAME, for example Self-Cath®, must be written on prescription for user to receive the determined choice of catheter; generic scripts may be filled by a medical supplier with cheapest product available resulting in no savings to the healthcare system or benefit to the catheter user.

For the Medical Supplier:

The choice of intermittent catheter was determined by the user and their healthcare professional. Please fill prescription as written. The following Medicare HCPCS codes apply to intermittent catheters A4351, A4352, or A4353.

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12/22/08 1:29:14 PM

SCILife, Vol. 6, № 5  

September/October, 2009

SCILife, Vol. 6, № 5  

September/October, 2009

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