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www.spinalcord.org

November/December 2005

Vol. 2, No. 5

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

Half Million Dollars Go To Hurricane Survivors Fund

Disaster and Disability

Philanthropist/Entrepreneur NSCIA a Key Leader in Hurricane Response Coalition ic and generous response. Says NSCIA Robert Klein Makes Donation By Gary Karp, Executive Editor, SCILife

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obert Klein, CEO of Safeguard Properties, Inc. and his wife Ita have made a personal gift of $500,000 to the National Spinal Cord Injury Association for the relief of people with spinal cord injuries and other disabilities who survived the ravages of Hurricane Katrina and other recent hurricanes. Safeguard Properties (www.safeguardproperties.com), based in Brooklyn Heights, OH is the nation’s largest privately held property preservation/mortgage field services company. According to NSCIA CEO and Executive Director Marcie Roth, a special, restricted fund named The Brian Joseph McCloskey Katrina Survivors with Disabilities Fund has been established. The fund is named in honor of Brian McCloskey, the late 18 year-old son of Joseph McCloskey, a close personal friend of Mr. Klein. Brian died suddenly in November, 2005. “In the midst of the largest natural disaster in this country’s history, the needs of people with disabilities were almost entirely disregarded,” said Roth. “Despite the best efforts of many of my colleagues, the vast philanthropic gestures were all directed to the general relief and recovery needs of people and animals affected by the devastating hurricanes. Thanks to Robert and Ita Klein,” Roth continues, “NSCIA will be able to begin to meet some of the many additional needs of people with spinal cord injuries and other disabilities in the Gulf States who have lost everything. Mr. & Mrs. Klein’s vision, leadership, and generosity towards these unmet needs is truly breathtaking.” In making the gift, Mr. Klein said: “My company has been working non-stop in the hurricane recovery effort by providing support to homeowners and the mortgage industry in New Orleans and all the Gulf States devastated by Hurricane Katrina. In addition, as human beings seeing the devastation firsthand, we have been deeply struck and touched by the heartache this and other hurricanes have caused to people with disContinued on page 10

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n August 29 Hurricane Katrina had struck the Gulf Coast, with Rita soon to threaten Houston. Within days survivors with disabilities were running out of critical supplies — or had been forced to leave things behind. With flood waters rising and life-threatening bacteria multiplying, emergency helicopter teams going house to house were only taking people — no wheelchairs — and three days of provisions, at most. Thousands of people found themselves away from home, out of state, in a shelter — or worse, a hospital or nursing facility — without their means of mobility. Reports came in of people with significant disabilities having to sleep on concrete floors. No emergency planning on the part of any government entity or any public relief agency had taken people with disabilities sufficiently into account. Word of the vast need of hurricane survivors with disabilities unleashed a dramat-

Your First Chair

Now There’s Real Choice By Richard Holicky, NSCIA Board Member

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ith so many choices of manufacturers, options, styles, and materials, shopping for a wheelchair these days can border on totally overwhelming. This has not always been so; in the not so distant past, picking out a chair was sort of like picking out one of Henry Ford’s Model Ts. You could have any kind as long as it was a heavy, clunky, folding, Everest & Jennings. After breaking his neck in 1956, Wally Dutcher spent eight months in a Chicago VA rehab hospital bed before getting his first chair, a chrome E&J 50 pounder. His only say in the matter was the color of the upholstery.

CEO Marcie Roth, “The disability community rallied, really stepped up.” Wheelchairs, walkers, sterile catheters, and various other supplies began accumulating in the Atlanta warehouse of Portlight Strategies, generously made available by Paul Timmons, who was experienced with transporting medical supplies around the world. But how to get these precious sup-

plies to the evacuees? There was no money to pay for the trucks and drivers and insurance necessary to get the warehoused treasures on the road. Many of the funding sources typically committed to disability issues had already committed themselves to the more generic relief agencies. Thanks to the serendipity of word on the street and the flow of Internet messages, $25,000 worth of relief came from an unlikely but very welcome partner; The Muslim Public Continued on page 8

Read about the experiences of three hurricane survivors with SCI on Page 8 “The rims were all slick chrome as well,” Wally recalls, “so they split rubber tubing and wrapped it around the rims for friction.” After a couple of years riding the standard E&J, Al DeGraff opted for the liberation of power and began fully exploring the campus of Southern Illinois University in 1970, one of the first campuses to make accessibility a priority. “That chair had a four-position joystick,” DeGraff explains, “Forward, Reverse, Left, Right. It had a drive belt that slipped a lot in the rain and a toggle switch to set the speed control at either high or low.” Things hadn’t changed much by 1968, when Anne Herman (C6-7) tried out her first chair, another E&J, in a Michigan hospital. Herman has struggled over the years to convince private insurance carriers that what she calls medical necessities aren’t frivolous extras. Medicare and

Anne and Paul Herman at their wedding in 1977.

Medicaid are just as notorious for saying “no” to necessities or prescriptions. Little known fact: Nearly 75% of all requests are denied. Nearly the same number of appeals are honored. In the 70s chair options expanded to include swing-away or stationary footrests, Continued on page 17


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November/December 2005


November/December 2005

from the editor

SCI Life STAFF

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

NSCIA NATIONAL OFFICE STAFF

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

BOARD OF DIRECTORS

Executive Committee PRESIDENT: Harley Thomas CHAIR, EXECUTIVE COMMITTEE: Janeen Earwood VICE-PRESIDENT FOR MEMBERSHIP: Pat Maher VICE-PRESIDENT FOR CHAPTERS: Shawn Floyd VICE-PRESIDENT FOR DEVELOPMENT: John Fioriti VICE-PRESIDENT FOR COMMUNICATIONS: Dana W. Matthews, SciD, JD, MBA TREASURER: Jeff Leonard SECRETARY: Susan Douglas, MD BUSINESS ADVISORY COMMITTEE LIAISON: Tari Susan Hartman-Squire CEO/EXECUTIVE DIRECTOR: Marcie Roth Directors Pamela Ballard, MD Tapan Banerjee, Ph.D. Teresa Fausti Blatt David Boninger, Ph.D. Milita Dolan Richard Holicky Paul Mortensen Christine N. Sang, M.D., M.P.H Cheryl Lady Vines Gary J. Viscio, Esq. Suzanne Wierbinski General Counsel Leonard Zandrow, Esquire

SCI Life PUBLISHERS

PUBLISHER: Charles W. Haynes PUBLISHER: J. Charles Haynes, JD

SCILife is a publication of the National Spinal Cord Injury Association SCILife is dedicated to the presentation of news concerning people with spinal cord injuries caused by trauma or disease. We welcome manuscripts and articles on subjects related to spinal cord injuries or the concerns of persons with disabilities for publication, and reserve the rights to accept, reject, or alter all editorial and advertising materials submitted. Manuscripts and articles must be accompanied by a self addressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertising published in SCILife do not imply endorsement of organizations, products or services. If you have any questions related to your membership with NSCIA, or would like to join, contact us at 901 East Willetta, Suite 2306, Phoenix, AZ 85006, e-mail: membership@spinalcord.org, fax: 602.239.6268, or phone us at 602.239.5929 or toll free at 877.778.6588. For questions not related to membership, write to: NSCIA National Office, 6701 Democracy Blvd., Ste. 300-9, Bethesda, MD 20817. Our voice phone is 301.214.4006 fax: 301.990.1265. Email us at info@spinalcord.org or go to www.spinalcord.org.

For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401, tel 713.526.6900 fax 713.526.7787, e-mail: chaynes@hdipub.com www.hdipub.com SCILife © 2005

Don’t Hate the Wheels By Gary Karp, Executive Editor, SCILife

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wheelchair. The very symbol of illness and loss. Anyone would be understandably horrified by the realization that they are about to spend their life “in a wheelchair.” And so of course the chair itself attains evil dimensions. The pain of a recent onset of SCI/D gets amplified by the prospect of being “confined” to a wheelchair. They can’t know, of course, how those of us who are active in the world with our disabilities have learned to value our chairs. We’ve learned that the wheelchair is a means of independence and freedom, a treasured tool that is virtually an extension of our body. It opens up potential and makes life possible. Given the plain reality of our disability, what could we do without it? It’s not confining, it’s liberating.

When the moment arrives to specify the chair itself — working, ideally, with the guidance of a qualified therapist and dealer — resistance often arises. The user isn’t ready to face the selection of their “prison,” nor often are family members or whoever is playing a supporting role. The attitude is often, “Just give me a chair!” However understandable the emotion, this is a grave mistake. In 1973 when I was injured, I didn’t have much of a role to play in the selection of my chair because, frankly, there wasn’t much to choose from. They measured my body, chose a seat width and depth, and away I went. Of course there were the features of balloon tires and removable armrests — not typical of the standard hospital-style chair — but still, specifying my chariot was not much of a challenge. It was not that great of a chair, but it was the best to be had at the time. Not knowing any better, I got out there and made my way in it nonetheless. Of course it helped a lot that I had the benefit of seven weeks in rehab in 1973, where they built my upper body up very substantially so I can push the monster around (see photo, page 17). The tradeoff, of course, is that the immense range of choices now available in wheelchairs makes it all the more imperative to fully participate in the process of selection. Most people will describe a litany of things that were wrong with their first chair — some of which I have to assume could have been avoided with greater participation, and having taken some time to learn all they could about chairs. First time users need

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to engage this process without letting their grief and resistance to the chair get in their way, difficult as that is. But the modern wheelchair has not arrived at its full fruition. Rory Cooper — a chair user of some years and an engineer of considerable esteem — shares some thoughts on the need to give priority to assistive technologies. Cooper, an SCI Hall of Fame inductee, is one of a cadre of very talented and dedicated researchers and designers — many of whom also use chairs — who intend to take us to the next generation of technologies and designs that will extend our mobility, independence, and quality of life more than we can imagine. Just as any of us riding the tanks of the 70s and before could not have realized that we’d have access to the customized, quiet, ultralightweight, computerized chairs we’re riding now. We need to liberate the chair from its symbolism of loss and pain, changing its image to its true function of freedom and possibility. The folks who had to leave their wheels behind as they were evacuated from the Gulf Coast hurricanes certainly learned a poignant lesson in how much that chair means in their lives. Our cover story sheds some light on how NSCIA and the disability community came together to reunite people and their chairs — or replace them — doing our utmost to be of service during the recent hurricanes. And they still need your help, which you may offer through your contributions to the Brian McCloskey Fund, which you can learn about on the cover page.


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November/December 2005

from the executive director

Unnecessary Tragedy Hurricane Katrina’s Avoidable Pain By Marcie Roth, Executive Director, NSCIA

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n November 10, I participated in a briefing to the U.S. House of Representatives Bipartisan Disabilities Caucus on emergency management and people with disabilities, specifically addressing the recent hurricanes Katrina and Rita. This briefing was attended by House and Senate staff, and many representatives of cabinet and sub-cabinet level federal agencies. It was convened to share what happened to people with disabilities before, during, and immediately after the hurricanes hit. The focus was on how to avoid the failures in planning, response and recovery which occurred, and how to meet the urgent long-term needs and accessibility issues in the Gulf States. These include housing, health care, transportation,

travel India On Wheels Pockets of Affordable Access By Tapan Banerjee, NSCIA Board Member

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f you've always wanted to see India but have been concerned about wheelchair access, fear not. Traveling to the east coast of India last summer, my wife and I found excellent facilities. In the heart of Calcutta, the Oberoi Grand — an old and classical hotel — had recently been refurbished with a fully wheelchair-accessible room. Like the entire hotel, the accessible room is luxurious, featuring high, molded ceilings, lush carpeting, the most modern facilities, and a large and accessible bathroom with a roll-in shower and a sink that can be raised or lowered. Facilities available in the hotel include all those offered in five star hotels. Several restaurants offer both Eastern and Western cuisine (all excellent in quality). There is a quiet, oasis-like interior garden around a swimming pool, a hotel shopping arcade, a business center (which, at

communication, and replacement of assistive devices. My full testimony — and that of other national disability advocates — is on the NSCIA web site at www.spinalcord.org. But it is a personal experience from the saga of the hurricanes that shows what gives life focus and purpose to what we do. On the morning of August 29th, I received a call I will never forget. My friend and colleague Susan Daniels — a former appointee to the Social Security Administration — called me to enlist my help because her sister-in-law, Benilda Caixetta, a quadriplegic woman in New Orleans, had been unsuccessfully trying to evacuate to the Superdome for two days. She had been calling repeatedly for a ride but, despite promises, no one came. The very paratransit system that people with disabilities had been unable to rely on in good weather was even more unreliable in this emergency. In my naiveté I thought a few phone calls to the “right” people would help, certain that I knew who to call. Despite many such calls, Benilda was still not being evacuated. I assured her that I was doing all I could to make sure help would be coming as soon as possible, when suddenly, hearing the panic in her voice, she said, “the water is rushing in!” Then her phone went dead. Five days later we learned that she had been found in her apartment, dead, floating next to her wheelchair. Sometimes things like this can’t be prevented, but even given the magnitude of this catastrophe, this was NOT one of those times. Benilda need not have drowned. NSCIA’s efforts to avoid further tragedy redoubled. When we couldn’t get any help

from FEMA to move donated durable medical equipment and supplies into the Gulf states, we began to raise money. There were many people who simply needed a wheelchair, a feeding tube, or a sterile catheter. We are deeply grateful for a donation from the Muslim Public Affairs Council who stepped up to meet this need when no one else would, and the recently announced gift from Robert and Ita Klein that has allowed us to create The Brian Joseph McCloskey Katrina Survivors with Disabilities Fund about which you can learn more in this issue or on our web site. We worked around the clock for weeks to try to get disability experts into the shelters to assess people‘s needs. I have worked with others to rescue dozens of mobility devices left at the New Orleans airport and reunite them with their owners. I have learned during the past two months that, for all of the emergency planning that has gone on since the attacks of 9/11/01, people with disabilities are not in good hands. Without immediate and bold steps, their needs will remain entirely unmet when the next disaster strikes. However, with continued leadership from the disability community and adequate action from Congress, people with disabilities can begin to trust that their needs will be better met in future emergencies, and taxpayers and the general public can rest assured that we are maximizing limited resources and minimizing unnecessary waste. We have the specialized knowledge to solve difficult problems. We will make this country and our world a better place for our efforts. It’s the least we can do for Benilda and others like her who perished because of a lack of leadership.

present, is not wheelchair accessible), and a staff that is always willing to do anything required to make your stay pleasant and workable. Directly outside the hotel entrance one can find the heart of the tourist bustle — shops of all kinds, street merchants, a multi-storied shopping mall (with elevators), and restaurants. Within Calcutta, there is never a shortage of things to see and do. The Indian Museum built in 1875, only a block from the Oberoi, is probably the best museum in India and one of the best in Asia. The Victoria Memorial is close by — an imposing reminder of the former British presence in the city. It houses a magnificent Indian museum displaying memories of Queen Victoria's visit to India in 1877. In India there is no accessibility via ramps for public buildings such as museums, libraries, or even hospitals. One can arrange "human help" to carry you up or down the steps. You may roam the city by public taxis (sans air conditioning) which are very reasonable in price and are large enough to carry a wheelchair and allow for transfer. There are no specially-equipped vehicles with ramps or lifts in India. Next we flew 200 miles south to Bhubaneswar, the capitol of the state of Orissa, known as the "temple town". At one time it had over 7,000 temples in it, but is now down to about 500. Hotel

accommodations — which the generous staff at the Oberoi Grand prearranged for us — were equally pleasant. We stayed at the Oberoi Hilton and enjoyed the comfort of another recently-renovated and fully modern wheelchair-accessible room. From Bhubaneswar there are several places of interest to visit by taxi. The first, Puri, is one of the four holiest cities in India. One may see temples, visit markets both downtown and on the sandy beach, and watch the fishermen coming and going out to sea every morning and evening, peddling their catch upon return. A sidewalk runs along a considerable stretch of the beach in the downtown area from which one can see all the activities on the beach, but there are no walkways out over the sand. The town center by the beach is accessible, and one can roam freely among the kiosks using a wheelchair. Although there are no totally modern hotels in Puri, we found perfectly adequate accommodations at the BNR Railway Hotel (British National Railway). A portable shower chair might be important for you there, but everything else is manageable. While we were there, the owner built us a ramp within an hour to allow us to navigate the few stairs leading to the dining area. Such is their desire to please. From Puri one take can take a day trip by taxi to Konarak, one of the "must see" sites in India as it houses the famous Temple of the Sun, constructed some time

Partners

We gratefully acknowledge the following NSCIA Business Partners who help make this publication possible.

MEMBER VALUE PARTNERS Bank of America New Mobility/Leonard Media Group

BUSINESS MEMBERS EinSof Communications Three Rivers Holding LLC Wheelchair Getaways

Visit www.spinalcord.org for details during the 13th century. It was built by an Orissan King to celebrate a military victory. There are many shops, stalls, and places to buy handicrafts, colorful artifacts, and textile materials on the way to or from Konarak. Traveling in India is not very expensive — in fact, quite the contrary. The largest share of the cost will be your airfare. Almost all of the major airlines fly to India. From the east coast of the U.S., depending on the season (more expensive in summer and winter) it will cost from $1,200 to $1,700, round trip, per person. Once there, traveling within India is cheap, and hotel costs are reasonable; a wheelchair-friendly room in a four to five star hotel along with all meals will not exceed $100 per day for two persons. Even though India has not caught up with the Western world in providing widespread facilities for wheelchair users, staying in four- or five-star hotels and planning well, one can enjoy the culture and colors of an extremely beautiful country. Our own experience was more than we could have hoped for. Dr. Banerjee is a retired Foreign Commercial Service Officer, Counselor with SCORE, active participant with the World Bank Disability Program, SCI peer mentor at the National Rehabilitation Hospital, Marketing Director for E-Car Corporation, and a consultant with NIDDR.


November/December 2005

from the president

The Challenge of Growth By Harley Thomas, President, NSCIA

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onprofit organizations typically face a variety of challenges in their efforts to serve the day-to-day organizational mission, driven by a long-range vision typically determined by the Board of Directors. These committed individuals are responsible for steering where the organization needs to go and how best to get there. Sounds pretty simple on the surface, but unless the board works as a team with staff, goals are often misplaced and never achieved. In this sense, the National Spinal Cord Injury Association is a typical nonprofit organization in its makeup. We have a national Board of Directors, a small paid staff, numerous chapters and support groups around the country, and association members. The original goals and vision were set over 55 years ago, and although there have been transitions through the years, these goals have remained pretty much on track —

we are devoted to being leaders in maximizing quality of life for people with spinal cord injury and disease. One could easily think that, a half century after our founding, most of the problems would be behind us and we would be sailing on smooth seas. After all, we’re still in business! In reality the problems never really go away; they are perpetual. Staff members come and go, there is a constant demand for funding, and we are always in need of new board members. Staying up with these continuing demands is what it takes to fulfill the mission of the organization. NSCIA is constantly evolving and changing much like society changes from generation to generation. Over the past few years NSCIA has been re-inventing itself once again. This is an extremely exciting growth period for NSCIA. But with growth comes some pain; a larger board, larger staff, more programs, and that never ending need for more funding. Sound familiar? As we attempt the transition from a grassroots organization with few staff members to one of true national prominence, the board must make the transition to one of governance. Governing is all about making important decisions about what our organization is; where it is headed and how well it is performing on the way to the desired goal. We must increase staff proportionately and generate sufficient revenue to pay staff and fund our growing programs. For years the NSCIA board has thought of themselves as a “working” rather than a governing board. Typically traditional volunteer-driven “working boards” have a tendency to overextend themselves in doing nongoverning tasks that are often accomplished at the expense of the primary mission: to

govern. When board members are involved in planning fundraisers, developing the agenda for a national conference, overseeing the day-to-day operation of organizational programs, and a multitude of other tasks, the ability to govern becomes quite clouded. It can be excruciatingly difficult to sufficiently disengage from this detailed hands-on work to make necessary and serious governing board decisions. If we are to make the transition successfully, this is a must. NSCIA is truly blessed with a group of wonderful individuals that make up our current board. It consists of members of the business community, doctors, lawyers, professionals of all types, and most of us are also members of the spinal cord injury/disease community. Our bylaws allow for a maximum of thirty members on the Board of Directors. At the present time we have twenty board members which, of course, means we have room for ten more. If you are looking for a challenging job, one that will provide a high level of personal satisfaction knowing you are helping to serve others in need, we would love to have you apply for membership on our Board of Directors. We ask for only 3–5 hours per week, and participation in a monthly phone meeting. To be considered for membership on our national board, simply send me your resume. Any information you supply will be held in strict confidence and will not be used for any other purpose. Send it to: Harley Thomas, President, NSCIA Board, 6701 Democracy Blvd, Suite 300-9, Bethesda, Maryland 20817. It will be our honor to have you join us during this exciting time of growth and accomplishment for our organization and our community.

RESERVE YOUR 2006 EXPLORING SPASTICITY CALENDAR NSCIA has partnered with nine other non-profit advocacy organizations and Medtronic, Inc. to bring you Exploring Spasticity. This national education program showcases a sampling of the individuals who are working to overcome the everyday challenges of living with spasticity — a condition marked by tight, stiff muscles. Themed “Think Big,” this year’s program invited participants to submit written and artistic entries that illustrate a goal they are working to achieve or have already achieved. A total of 47 entries were submitted from across the nation. Twelve of these submissions will be highlighted in the 2006 Exploring Spasticity calendar. “We want the calendar to be a daily reminder to all affected by spasticity that they are not alone, there are others out there like them, and there is hope,” said Eric Larson, NSCIA COO. To take advantage of other resources through Exploring Spasticity visit www.exploringspasticity.com for: • Spasticity Information Center — Find information on spasticity, treatment options, and treatment centers. • Gallery — View the Exploring Spasticity entries. All submissions will be displayed in the gallery. • Advocacy Group Resource Room — Link to NSCIA and other groups working on behalf of those with spasticity. • Calendar Ordering — Send a friend or loved one a calendar as a holiday gift, or order one for yourself at no charge. You may also call 800.731.2921 to reserve calendars.

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November/December 2005

bac

BAC Members Making News Leadership and Rapid Response By Tari S. Hartman-Squire, NSCIA BAC Board Liaison

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SCIA’s dynamic Business Advisory Committee (BAC) will be highlighted in an upcoming book focusing on Business & Disability by Charles Riley, a disability/media expert. He will be using our progressive BAC model as a prime example of how disability organizations initiate a paradigm shift in relating to corporate America — moving away from the provincial request for a “financial handout” to an offer for a mutually beneficial “fiscal handshake.” NSCIA knows how to DO business WITH business. Building upon the success of the last two focus groups, NSCIA members will be participating in a third focus group in the D.C. area in March, 2006. The BAC market research working group is harvesting rich, qualitative data from the focus groups as an informational springboard for creating a first ever NSCIA White Paper Report on building the business case for employment of and marketing with people with SCI/D. Stay tuned for more details in SCILife. The BAC welcomes its newest members representing retail, financial, and travel sectors. Corliss J. Fong, Operating Vice President for Federated Department Stores (Macy's and Bloomingdale's) who serves on the National Retail Federation's Council on Diversity. Deidre Davis, Director of Americans with Disabilities Act Services for Wal-Mart. Deidre is one of the few corporate executives with SCI, and was a Clinton presidential

legal

Your Rights as a Patient with SCI By Len Zandrow, NSCIA General Counsel

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o err is human, and no persons in our society are immune from making errors, including our medical professionals. When the quality of care they provide fails, the results can be tragic. According to a recent Harvard Medical Practice study, medical malpractice is the third leading cause of death in the United States. For patients with spinal cord injury, the appropriate response to medical malpractice is unique, fact-specific, and as varied as the particular circumstances involved. One of the best ways to protect yourself from substandard care is to be proactive, to be an

appointee to the State Department. Mavis Hall, EEO/AA Manager of Citigroup Global Workforce Diversity, with a wealth of experience in corporate diversity and recruiting. And Michael J. Caron, Vice President, Product & Program Development of Cendant (parent company of Avis and Budget Rental Cars). Michael established the very successful Avis Access™ program for drivers with disabilities. We thank BAC co-chair Annette Kellermann, former Senior V.P. of Accessible Banking for Bank of America for her disability community support as she moves on to another division within the bank, ending her tenure with us. With "brick and mortar," online, phone, drive thru, and Talking ATM® banking, and positioning National Disability Awareness Month on the bank’s homepage during October, she has built an accessible banking legacy in a few short years that gives the phrase "higher standards" a whole new meaning. She is greatly valued by many disability organizations, and will be missed. Under Annette’s leadership, Bank of America Accessible Banking and Military Banking divisions joined forces with NSCIA by sponsoring an ad in the Combined Health Charities/Combined Federal Campaign annual report to support Ma’rwa Ahteemi, the young Iraqi girl with a spinal cord injury who NSCIA brought to America for rehab. Michael Takemura of Hewlett-Packard was quoted extensively in the October issue of DiversityInc. in their National Disability Employment Awareness coverage. Northwest Airlines has just released its educated consumer, and to know and exercise your rights as a patient. Generally, our rights as medical patients are defined by a variety of federal and state statutes and by the common law. While specific provisions differ state by state, typically most laws provide protection in a variety of areas. Freedom of choice in the selection of a medical facility and a physician. This right, however, may be qualified in the case of emergencies when patients may be unable to make decisions about their treatment. Informed consent as to all alternatives which are medically viable. In order to evaluate risks properly, the patient must be advised in a reasonable manner of all significant medical information that the physician possesses — or reasonably should possess — that is material to an intelligent decision whether to undergo a proposed procedure. Prompt and adequate response. All reasonable requests must be answered within the medical facility’s ability. Right to obtain, upon request, basic information about the name and specialty of the physician or other person(s) responsible for coordinating the patient’s care. Some laws also require physicians, students, and other employees of medical

revised "Air Travel for People with Disabilities" brochure with a wonderful NSCIA surprise. The cover model is NSCIA VP of Membership Pat Maher (photo, right) who also serves on Northwest Airlines Customer Advisory Board on Disabilities. Visit www.nwa.com/services/onboard/special for information. Also pictured on Pat's wheelchair are the Natural-Fit handrims by NSCIA board member David Boninger's Three Rivers Technologies company (www.3rivers.com). BAC Companies Take the Lead in Disaster Relief Northwest Airlines was the first to operate in Gulf Port, MS, transporting evacuees. They activated their “Assist Program” to provide psychological and logistics support to employees, issued customer waivers to change travel, and donated one million WorldPerks miles to the Salvation Army. BAC co-chair Susan Mazrui of Cingular Wireless hosted a Disability Funders Network (DFN) teleconference to inform and motivate funders about disability-specific unmet needs with traditional disaster relief/emergency preparedness. As a result of that call — in which NSCIA CEO Marcie Roth provided disability briefing — DFN has raised over $100,000 for their “Rapid Response Fund.” BAC member Rayna Aylward of the Mitsubishi Electric America Foundation was the first to kick off the fund. Visit www.disabilityfunders.org. Dana Mathews, formerly with Pfizer, is Executive Director of “The Neighborhood,” a coalition on health care. They have donated an 80-passenger aircraft to bring support, medical supplies, and to transport people and doctors such as the Association of Black Cardiologists. Kathryn McDougal reported for Marilyn Hamilton of Sunrise Medical/Quickie that their corporate Human Resources director is providing assistance to the Red Cross. Products were shipped to several cities. They are working with Wheels for Humanity, and opened a

distribution center in Texas within 24 hours to house healthcare providers staffed through the Labor Day weekend. Sunrise is also matching employee donations to their disaster relief fund. Tom Wlodkowski of AOL reported one million dollars in Time Warner and WB network initiatives that employees matched within three days. The company equipped disaster relief centers with voice over Internet protocol (VOIP) and set up wireless network sites to connect family members. NSCIA honors and appreciates BAC member companies who have given so generously of their time and resources in response to the recent emergencies.

facilities to wear identification badges that display their photograph and disclose their name, license status, and staff position. Receipt of any rules or regulations which apply to the patient’s own conduct while he or she is being treated within a medical facility or institution. Confidentiality of all medical records and communications to the extent provided by the law. Privacy during care and treatment within any medical facility. Access to, and inspection of, the patient’s own medical records, upon request. The patient may be required to pay for any photocopying expenses for a personal copy of these records. If such records are required in order to support a claim for Social Security benefits or another governmental needs-based program, however, the records should usually be copied free of charge. Prompt life-saving treatment in an emergency without discrimination based upon economic status or otherwise. Receipt, upon request, of any information regarding financial assistance and/or free healthcare options for patients. Prompt and safe transfer to another medical facility, if the patient is refused nonemergency treatment because of economic

status or an inability to pay for services. Receipt, upon request, of an itemized invoice or statement of all medical-related charges submitted for payment to an insurance company or some other third-party. An explanation, upon request, regarding any relationship or affiliation of the patient’s healthcare facility to any other medical or educational institution. Right to refuse to be examined, observed, or treated by medical students. Right to refuse to serve as a research subject or to be examined or treated whenever the primary purpose of such care is educational or informational rather than therapeutic. Patients may also have a right to refuse treatment based upon the creed or tenets of a church or religious denomination whose beliefs limit the form and quality of treatment to which they may submit. Other laws may protect you as well depending upon your particular jurisdiction. Knowing and reasonably exercising these rights may be your best defense against possible oversight, neglect, or abuse. They also allow you to achieve the maximum reassurance for yourself and your loved ones that you know as much as possible about your care and the people providing it.

Pat Maher, NSCIA Board of Directors.


November/December 2005

travel

Advocating for Beach Access

someone shot us down with the logic that the state board assigned a similar mission would see it as a violation of the tax law. Two councilmen came to the rescue and suggested the town use a local beach fund to try the mats only. These local tax funds were made available, and the mats became a reality. Once across the deep sand, any chair, manual or power, can cruise along 26 miles of hard sand!

By Bart Brophy

T

hree years ago, Clif Hoge, a scooter user, Channing Heis, a manual wheelchair rider, and I, a power chair user, devised a way to get the beaches of Hilton Head Island, South Carolina accessible to people with disabilities. We lived on the island but did not have access to our own beaches. I had lived on Hilton Head for ten years, Clif more than twenty, and Channing just a few. Cities and counties are required to have processes in place to solve situations like this, but their procedures had entirely failed us. They had an annual survey in place for targeting and removing barriers to equal access which required the participation of people with disabilities. There was also a grievance policy and resolution procedure related to barrier removal. Most cities and counties have not hired an experienced, conscientious ADA coordinator, as required by federal regulation tied to use of federal money. The title of ADA coordinator is sometimes given to anybody convenient, who might even have an existing full time position. This is what we felt was happening on Hilton Head. We got a slow, almost nonexistent response from the city. They were clearly not going to correct the injustice, saying there was no funding. One person in a position of decisionmaking responsibility can prevent an entire sector of a population from participating in their own community or partaking of the tourist experience. We learned that the seriousness of someone having their rights violated can be trumped by the most ridiculous excuses. One excuse was that the Department of Natural Resources would never allow access for people with disabilities because of risks to turtle nesting or unpredictability of tides. We were told that the city could not get insurance for beach access or that they didn’t want people with disabilities on the beach for their own safety sake. We had some experience in grant writing, so we investigated the accommodation tax process or “bed tax,” a percentage charged to tourists at hotels and restaurants. Nonprofits are allowed to compete for the money it costs to accommodate tourists. We saw a direct fit, and wrote a grant. We focused on a product known as “mobi” mat, which the military can use to create helicopter landing pads in the desert, as well as other commercial applications like beach access. It is light, removable, and strong. We also had beach wheelchairs and other products for access. Hilton Head Island has a tax board that reviews locally submitted requests. They thought it was a great idea, until

JOIN US For the NSCIA Summit on Spinal Cord Injury October 15-17, 2006

As many other barrier removal projects have shown, the impact of the accessible beaches was far-reaching for Hilton Head Island’s entire tourist draw — the reason they can levy an accommodation tax. Now it was easy for strollers, bikes, and the elderly. People in chairs from all over the world have been on Hilton Head beach. An international wheelchair tennis tournament is held here every year now, and is very popular. I have seen a guy get out of his chair, go swimming, and jump back into his wheels independently. Being dragged across the deep sand was a humiliation they used to endure for love of the beach but now they were totally independent! Exhausted after this battle, we remain ostracized from our community. The systemic issues have never been corrected. We know there is much more that should be done. For convenience, the town provider of beach chairs, umbrellas, bicycles, and other water equipment should provide the equivalent for locals and tourists with disabilities. There should be accessible carts for golfers with disabilities, boat boarding equipment for tour boats. If you have a mobility disability, accessible usable affordable transportation does not exist here. In my new position as director of a center for independent named LIFE Inc. in Savannah, Georgia, we have convinced Tybee Island, GA to provide access. They now have mats and beach wheelchairs including a lounger that allows children with disabilities to experience the ocean. Please do not sit around and wait. The decision-makers need your input. Call and see if you have an ADA Coordinator overseeing your interests. They should know all the relevant policies, practices, and procedures. Ask for a copy of the annual barrier removal plan and the time schedule for the removal of those barriers found. Our success proves that you can get things done, even when everybody says it’s impossible. Now we can party down on the beach! Bart Brophy is the recently-hired Executive Director of LIFE (Living Independence for Everyone), a center for independent living. He is quadriplegic from an accident playing lacrosse while a college student twenty three years ago.

and the SCI Hall of Fame awards ceremony at the John F. Kennedy Center for the Performing Arts Visit www.spinalcord.org/summit for more details

FILLER

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November/December 2005

Disaster and Disability Continued from page 1

Affairs Council (www.mpac.org) which works to promote an accurate portrayal of Islam and Muslims in mass media and popular culture. This initial funding in hand, distribution points were set up at operating independent living centers in the disaster areas, where successive truckloads could be dropped off for local delivery. Parallel efforts were under way by groups including Wheels for Humanity, the Wheelchair Foundation, Hope Haven International, and Joni and Friends Wheels for the World who collectively shipped over 1,500 mobility devices to Louisiana, Mississippi, and Texas. Manufacturers Invacare, Pride, and Sunrise Medical delivered over 300 new wheelchairs and scooters. NSCIA’s Roth was at the frontlines of the effort, facilitating a coalition of groups digging in to respond to the emergency. “Everybody tried to use their best skills,” she says. “Because of my experience after 9/11, people were looking to me to coordinate.” Mark Johnson, director of advocacy at the Shepherd Center and Lex Frieden chairperson of the National Council on Disability were among others who played key leadership roles. Frieden, based in Houston, had his own experience with a previous flood in which he found himself chest deep in water, his house ultimately destroyed. In the chaos, it has been impossible to gather hard data, but the Scripps Howard News Service reported that over 4,800 people had been evacuated from hospitals, nursing homes, and group homes to other cities. The U.S. Census Bureaus reports that over 15% of New Orleans’ residents had a disability of some kind.

Real Stories, Real Loss

H

ere are just a few examples of the actual experiences of people with spinal cord injury impacted by the Gulf Coast storms. Their stories are sadly typical, and our hope is that their experiences will not be entirely in vain, but help with the effort to establish effective emergency preparedness and disaster relief policies and systems. These stories can and should have been about needs being met, rather than lives being compromised.

Jason

“To Whom It May Concern: Presently, Jason — eleven years post injury — and I are homeless and living in a Salvation Army Shelter due to Hurricane Katrina.” With this message, Wilmarine Hurst sent her impassioned call for help to every email address she could find. NSCIA Executive Director and CEO Marcie Roth returned her call overnight and learned of the family’s plight.

Gulf Coast advocates faced their own losses. Eight staff members of The Advocacy Center in New Orleans lost everything in the storm and ensuing floods. Disability advocates were thwarted in their efforts to share their expertise with staff from the Federal Emergency Management Agency (FEMA) — whose temporary trailer offices were inaccessible — and the American Red Cross, who denied them access to their shelters — even to assess people’s needs. Deaf evacuees couldn’t hear the announcements over loudspeakers — with sign interpreters frequently denied access as well — and those with vision impairments couldn’t see the signage directing them to assistance. The Red Cross was by far the largest recipient of public donations at $1.63 billion, which allowed them to field over 200,000 mostly volunteer relief workers and to serve more than 27.4 million hot meals, among other undeniably good works. But they believed it was not their role to address disability, sending people to “special needs” shelters, where, explains Marcie Roth, ”in one case, it was so overcrowded, that one woman told me she ended up sleeping in her wheelchair for days on end.” Continues Roth, “After many thwarted efforts to get the Red Cross to acknowledge their failures to address the needs of evacuees with disabilities, Senior Red Cross staff are beginning to recognize that they need to do things differently.” Despite the many failings, there was real heroism on the part of rescue teams, as demonstrated in this woman’s account: “To get me off the ninth floor with no elevator, the firemen came in, carried me down two flights of stairs, cut a hole through the wall to the parking lot, put me in the back of a pickup truck, and took me down to the ambulance. Then we drove all night to safe-

ty in Houston." The Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities (ICC) — where representatives from 24 federal agencies work together and are able to reach the highest levels of government — were able to address some critical needs. Dr. Margaret Giannini, Director of the Office on Disability in the U.S. Department of Health and Human Services, worked with the Center for Medicaid and Medicare (CMS) to establish waivers for Medicaid recipients who were moved to other states. “You live in Louisiana, you’ve been transferred to Montana,” explains Roth, “and you’ve got nothing. You need to see a doctor, need your medicine.” CMS assured providers that they would be paid for services and should presume the eligibility of people seeking services. This was just one of a long list of items on the ICC action list, thanks also to the leadership of Daniel Sutherland of the Department of Homeland Security. The ICC offers extensive emergency preparedness information at www.dhs.gov/ disabilitypreparedness.html. The future is very much in the sights of disability advocates, with important lessons to be learned for future disaster management planning. Emergency preparedness and Katrina-specific material is available from the National Organization on Disability (www.nod.org) as part of their Emergency Preparedness Initiative launched following the attacks of 9/11, and the National Council on Disability (www.ncd.gov), an independent government agency. These and other advocacy groups have the topic high on their agendas. In Texas, 7,000 available housing units were identified by the U.S. Department of

Housing and Urban Development (HUD). Advocates are wondering why those units were not made available in previous years to people languishing on long waiting lists for housing. Success stories in the hurricane response have revealed weaknesses in the broader system of meeting the needs of people with disabilities. NSCIA is working to ensure that these needs are taken into account. In her testimony to the House of Representatives Bipartisan Disabilities Caucus on November 10, NSCIA’s Marcie Roth emphasized, “Please listen to those who know best, not those who have a financial interest in filling nursing home beds or denying basic medical equipment that maximizes health and independence. We can help make Medicaid and Medicare, housing programs, and other programs work better for people with disabilities and save a lot of taxpayer dollars in the process.” The need for donations remains great. Nonprofit organizations serving Katrina survivors with disabilities may apply for Rapid Response Funds from the Disability Funders Network, www.disabilityfunders.org. DFN is a trade association through which companies like American Express, Cingular Wireless, IBM, and McDonald’s recognize the importance of granting money to disability causes. Says Executive Director Jeanne Argoff, “I knew we could get the money to the right place because of relationships such as we have with Marcie and NSCIA.” You can make a donation through an Independent Living Center of your choice. A full list can be found at www.ilru.org. Also visit www.katrinadisability.info, a site set up during the emergency which continues to be a central information source, and read ongoing reports at the NSCIA web site, www.spinalcord.org.

Jason, in his thirties now, acquired a high-level spinal cord injury as a result of a random gunshot outside a friend’s home during college. He lived with his mother until Katrina struck hard in New Orleans’ 9th ward. Forced to leave without Jason’s power chair and only the essentials for three days, they ended up in a Salvation Army facility that was entirely unequipped to support them. “We have not been able to secure clothes or any basic funding,” wrote Wilmarine. “FEMA is taking a long time to help and we are missing out on everything because we're not able to get around. Jason is using an old manual wheelchair and I have to push him everywhere.” Jason spent several weeks in a hospital as a direct result of living in the shelter without the proper resources. This educated, family-oriented, mother and son had lost everything. “Normally, I would never find myself in this sort of begging position,” she continued. “But this has been anything but normal. People's lives were totally shattered. Families were torn apart. Please help us.” They now feel it was a good decision to leave, but not to leave everything

behind. Not only has their home been lost, but Jason’s dog was left behind and lost and a large collection of books, many signed by the authors, that Jason and his mother shared. Jason and Wilmarine, who has other children, including twins in college, have rented a home in Plano TX. They hope to be able to get back to New Orleans in the near — but uncertain — future.

continue working and have access to healthcare and other disability related services. $100,000 won’t pay off his mortgage and it won’t allow him to buy a new home in Baton Rouge. The cost of housing is just too high there.

Charles

Charles, a man with a good job, his own home in New Orleans, and flood insurance, hasn’t been able to bathe in ten weeks. He is quadriplegic and homeless following the hurricane. The lack of personal care in the shelter he was evacuated to has landed him in the hospital twice and he now has a staph infection as a result of his last hospitalization. His insurance will pay over $100,000 to repair his accessible home, but his community is destroyed. There is no public transit system, no grocery store, and no healthcare system. He can’t afford to keep paying the mortgage and taxes on a home he can’t live in and he can’t afford to move to Baton Rouge where he could

Selena

Selena, also quadriplegic, lived in her own home in Bayou La Batrie, Alabama. She had chosen to pay for college rather than pay for homeowners insurance, gambling that it was a better investment. On August 29th, she evacuated first to family, and then to a crowded, understaffed special needs shelter where she slept in her wheelchair. Selena survived the hurricane but she hasn’t done so well in the ten weeks after the hurricane. When the shelter was unexpectedly closed down, she was sent to a bed and breakfast without an accessible bathroom. Ultimately her skin couldn’t take the abuse and she developed a lifethreatening pressure sore. She ended up in the hospital and then was transferred to a nursing home. Due to inadequate care, she now faces surgery and months of recovery. She is living in a nursing home. She has no place else to go.


November/December 2005

The Products of Therapeutic Alliances

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NeuroEDUCATOR

(937) 879-0734 • (937) 879-5211 fax www.ERGYS.com • info@ERGYS.com

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

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

ERGYS State-of-the-art functional electrical stimulation (FES) ergometry to give those with SCI the healthful benefits of using their leg muscles again. ERGYS®, REGYS, SpectraSTIM®, NeuroEDUCATOR®, and The Power of Your Muscles are trademarks of Therapeutic Alliances Inc. Parastep® is a trademark of Sigmedics Inc. ©2005 Therapeutic Alliances Inc.

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November/December 2005

arts

The Beauty of Movement

AXIS Dance Company’s Disability Vocabulary --

By Lyena Strelkoff

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hat does it mean to dance and who gets to be a dancer? No less compelling questions are asked by the existence of the AXIS Dance Company. Named for the hub of a wheelchair wheel where individual spokes meet and cooperate to turn the wheel, AXIS is pioneering an inclusive dance form they call “physically integrated dance.”

and without disabilities. Able-bodied dancers leap and run while quadriplegic dancers in power chairs weave brisk patterns around them. In a piece called “Flesh,” multi-body, human sculptures shape-shift atop power chairs whose quadriplegic users maneuver the group through precise patterns on the floor. Or two dancers offer variations on a theme, one elegantly posed standing, her arms waving lyrically above her head while the other, seated in her wheelchair, waves her arms in unison with the first. Such variations

her crutch, using it as a pivot on which to spin, or to elongate her torso in a gravitydefying arch. In these ways, AXIS’ choreography doesn’t just accommodate its dancers’ different abilities, it is dependent on them. Able-bodied movement is translated for disabled bodies, but disabled movement is also translated for able-bodies. Founding company member Bonnie Lewkowicz, who dances with a spinal cord injury, cannot open her hands. In “Secret Ponies,” her able-bodied partners shape their hands to match Lewkowicz’s, which are choreographically interesting. Current artistic director and co-founder Judith Smith was not a dancer but a champion equestrian at the age of 17 when her neck was broken in a car accident. “I sat still for a lot of years feeling completely alienated from my body,” she says. When a personal attendant began doing improvisational movement with her, she remembers, “I got really excited

AXIS dancers, from left, Katie Faulkner, Sonsheree Giles, and Bonnie Lewkowicz.

Founded in 1987 by a group of people with and without disabilities — and with and without dance experience — this professional troupe now boasts more than forty original repertory works, many choreographed by luminaries in contemporary dance. Founded in 1987 by a group of people with and without disabilities — and with and without dance experience — this professional troupe now boasts more than forty original repertory works, many choreographed by luminaries in contemporary dance. Each of their works includes dancers with

Donation... Continued from page 1

abilities. Their plight has stayed hidden under the radar screen, and it is our hope that this donation will make the first dent in addressing their additional needs. It is also our hope that others in the business and philanthropic communities will come forth to help those who have been most in need of recovery and rehabilitation.” "The generosity of Mr. Robert Klein will be measured not in dollars, but in the restoration of dignity, community, and productivity for countless persons with disabilities struggling for recovery following Hurricanes Katrina and Rita," said Margaret

are traditional in modern dance for their beauty and complexity. Each dancer’s assets are used in service to the choreography. Refreshingly, disabled dancers’ crutches, prosthetic legs and feet, and wheelchairs are considered assets. Nadia Adame, a former AXIS dancer with an incomplete spinal cord injury, uses her crutch to create three points of contact with the floor, meaning she can lean and stretch in unique ways. In addition to using her free arm, torso, and head to express movement, she also exploits the possibilities created by

about moving.” Years later, when Smith, Lewkowicz, and others choreographed their first dance piece, the question at hand seemed simple: “Why not dance with a disability?” Challenging internal and external prejudice is never simple but what has emerged from the dedicated seeking of this company might now be considered revolutionary. In addition to a five-month performance season, AXIS offers classes for adults and children with and without disabilities in schools, residencies, and at their studios in Oakland,

J. Giannini, M.D., FAAP, Director of the Office on Disability, U.S. Department of Health and Human Services. "While considerable effort has focused on the short-term needs of those struggling to rebuild their lives following these twin disasters, Mr. Klein's generous gift will help enhance long-term recovery for persons with significant disabilities in the Gulf Coast region." Secretary of Homeland Security Michael Chertoff has estimated that there are one million people with disabilities who were adversely affected by Hurricane Katrina alone. It is estimated that at least ten percent, or 100,000, were people with significant disabilities, and at least two percent, or 20,000, were those with severe disabilities. The Brian Joseph McCloskey Katrina

Survivors with Disabilities Fund will provide: • • • • • •

Direct assistance with down payments, deposits, and where other resources are not available, cash to rebuild homes Cash to replace durable medical equipment not covered by private insurers, Medicaid, or Medicare Assistance in furnishing homes, replacing items that will not be replaced through FEMA or other sources Replacement of lost vehicles with wheelchair lifts and/or hand-controls Advocacy to create disability-specific funding to address the additional needs of hurricane survivors with disabilities Support for work to maximize public policy initiatives to address the current

CA. Teaching often in integrated pairs (again, with and without a disability), AXIS dancers obliterate notions about the nature of dance and who gets to do it. Students are encouraged to develop their own movement vocabularies while collaborating with others — with striking results. AXIS’ impact extends far beyond people with disabilities and its own students. In an oft-described moment, company member Stephanie Bastos tumbles and leaps with her stagemates then, at center stage, quietly takes off her prosthetic leg and continues to dance. It is a stunning moment that challenges cultural myths of what having a disability means — and what it doesn’t mean. The broader dance community has gained greater perspective and imagination, too, thanks to AXIS’ contributions. Choreographers and teachers hired by AXIS must reexamine their standard movement vocabularies in order to embrace the limitations, and possibilities, of AXIS dancers. Those who greet the challenge find an opportunity to refine their expressive abilities. Even visionary choreographer, Bill T. Jones, commissioned by the company in 2000 said, “AXIS showed me what dance could be.” Alisa Rasera, Education Director and an able-bodied company member can relate. She first witnessed integrated dance in a film featuring England’s CandoCo Dance Company and was fascinated. Years later, watching AXIS perform live, she felt “heartdrawn” to the work. For her, as a dancer and choreographer, integrated dance has offered a wider arena for creativity. In addition to many triumphs, including winning major grants and multiple awards, AXIS faces numerous challenges. Touring, a significant source of revenue for the company, is a mixed blessing. Delta Airlines once dropped Smith’s power chair off a conveyor belt jeopardizing imminent performances, and many of the dancers find traveling grueling. Venues and towns are frequently less accessible than they should be, though AXIS has turned many such circumstances into powerful advocacy. Thwarted by a lack of curb cuts and other accessible features while on tour in New England, company members — and the media attention they drew — inspired city planners to tackle some of these issues. These and many other obstacles, like the non-existent pool of professionally-trained dancers with disabilities capable of executing AXIS’ sophisticated and highly specialized choreography, are constant, nagging companions posing, as yet, unanswerable questions. Yet AXIS continues to grow; its members know that even when there are no answers, there is power in the asking. disaster mitigation efforts as they affect people with disabilities, as well as for future catastrophic events Says NSCIA’s Roth, “We join the Klein family in offering condolences to the McCloskey family at this very sad time. We will do all we can to honor Brian’s life and his memory through our efforts to make a very big difference for hurricane survivors with disabilities. Brian’s name will forever be associated with a truly wonderful effort.” To make a donation to the The Brian Joseph McCloskey Katrina Survivors with Disabilities Fund, go to www.spinalcord.org or send a check in any amount to NSCIA, c/o HSS, One Church St., Suite 600, Rockville MD, 20850.


November/December 2005

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November/December 2005

YOU

{

ARE THE MOVING PART

We like to think that the ERGYS is one of the alltime great marriages of man and machine. Take an incredibly clever engineering design and combine it with a motivated rider and you get one intense workout. And with five computers operating in perfect harmony, there’s only one thing missing: THE POWER OF YOUR MUSCLES The ERGYS for home and clinical use is a prescribed device for C- and T-level SCI and other neurological conditions. ©2005 Therapeutic Alliances Inc.

ERGYS®, “You are the moving part,” and “The Power of Your Muscles” are trademarks of Therapeutic Alliances Inc.

333 North Broad Street Fairborn, Ohio 45324 USA (937) 879-0734 • (937) 879-5211 fax www.ERGYS.com • info@ERGYS.com


November/December 2005

sports

Wheelchair tennis athlete Sonja Peters.

Who Wants to Play Tennis? By Harriet Enzor

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heelchair tennis is one of the fastest growing recreational and competitive sports across the globe and is becoming one of the most accessible and integrated sports around the world. This game of tennis is for everyone — all ages, and all levels of disabilities including quads. It can be played with other wheelchair players or as an “up/down” match (wheelchair players with or against able-bodied players). The only boundaries in this sport are the lines on the court. The court dimensions are the same as able-bodied tennis, the net height is the same, and the racquets are the same. Wheelchair tennis also follows the same rules, except that the ball is allowed to bounce twice for the wheelchair player. The second bounce can be either inside or outside the court boundaries but the first bounce must be inside the lines. The higher the level of play the less likely a player will use the second bounce — which would give their opponent time to reposition to return the ball and score. There is more opportunity to participate in wheelchair tennis than ever, as close as your own neighborhood. Numerous wheelchair tennis clinics and camps are held on college campuses, in city parks, in tennis centers, and at medical facilities — whether for recreational players or those interested in high performance training. There are camps for ladies, for beginners, quads, and juniors (players under the age of 18), allowing players to learn basic skills and try out the specialized sports chairs designed for tennis. Your level of disability will influence how you hold the racquet and move the chair on the court. Mobility is the key. Sports chairs are specifically designed with angled, or “cambered,” wheels to increase stability, agility, and speed. Most sports chairs are equipped with anti-tip casters. Quadriplegics strap their racquets to their hand with medical tape. Many players use straps over the feet, around the waist, hips, and chest to give them greater security in the chair. The player and the chair move as one. The idea is to use whatever it takes to get you moving on the court except your feet, which may not touch the court. That is considered a “foot fault” — which loses you the point. Your wheels may not cross the base line before you serve the ball. As the organizing body for wheelchair tennis, the United States Tennis Association (USTA) promotes, develops, and exposes wheelchair tennis across the nation through each state’s tennis association. Top professional players like Pete Sampras, John McEnroe, Conchita Martinez, Chris Evert, and Martina Navratilova have participated in exhibitions around the world to promote wheelchair tennis. Players looking for good old fashioned competition can participate in the many tournaments held each year across the U.S. and around the world. There are several levels of play for adult, senior, and junior paras

and quads in singles (one player playing against another) and doubles (two players on a team playing against another team). The Open division is the highest level of competition. One can earn a national and international ranking playing in these tournaments — along with winning prize money! For the first time in the history of wheelchair tennis there were high performance wheelchair tennis players from the United States and Europe at the U.S. Open this past September in New York. These players will go on to compete in the U.S. Open USTA National Wheelchair Championships at the Barnes Tennis Center in San Diego, CA. U.S.A. League tennis has embraced the concept of up/down play and this acceptance continues to grow in the minds of traditional tennis players. It is refreshing to go out on a tennis court in a sports chair, motorized chair, or an everyday chair and always have someone to hit with. For the first time in the history of wheelchair tennis, there are national league teams of able-bodied and wheelchair players on the same team competing in an able-bodied arena. To imagine one man’s dream becoming a reality for the whole world is phenomenal. Brad Parks is considered the founder of wheelchair tennis. He will tell you he had no idea that the sport would explode across the world as it has, but he knew it had potential to be a good sport to play in a chair for anyone with any level of disability or ability. That’s what so great about tennis —

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Heart Disease, You, and Your SCI By Larry F. Hamm, Ph.D.

C

everyone can play. Whatever the level of impairment, tennis can be adapted to the disability, not the disability to tennis. Playing tennis benefits one’s health and fitness, builds self-confidence and self-esteem. It provides an avenue for socializing and fellowship and can actually help develop movement skills necessary for independent living. Playing tennis provides one with a sense of accomplishment whether you choose to play recreationally in your area parks or choose to become a high performance player. So let’s get out there and play! I’ll see you on the courts. Dr. Harriet L. Enzor is an associate professor in counselor education at Campbell University, Buies Creek, NC. She is an L5 para and a national U.S. Open wheelchair tennis champion who has received numerous awards. Dr. Enzor is a Professional Tennis Registry-certified tennis instructor in able bodied and wheelchair tennis. She may be contacted at enzor@campbell.edu Contact www.usta.com to find out more about wheelchair tennis, or call your state tennis association.

callahan

HD, CAD, and CVD. How’s that for alphabet soup? These are acronyms for various categories of diseases that can affect our circulatory system, which includes the heart, arteries (blood vessels that carry blood from the heart to all parts of the body), and veins (blood vessels that carry blood from all parts of the body back to the heart). CHD is Coronary Heart Disease, and affects the heart and circulatory system. CHD is also known as Coronary Artery Disease, or CAD. The underlying disease process that causes CHD is “atherosclerosis,” a blocking of arteries. “Athero” refers to gruel or paste, and “sclerosis” means hardness. Atherosclerotic blockage is the result of fatty deposits in the walls of arteries. Over time, these collected deposits restrict the flow of oxygen transported in the blood. When atherosclerosis occurs in the already relatively narrow arteries that supply blood and oxygen to the heart muscle, it is termed CHD. Cardiovascular Disease — or CVD — refers to various diseases that may be present in the circulatory system but outside of the heart. The heart muscle needs a constant supply of oxygen in order to properly do its job of pumping blood to all parts of our body twenty four hours a day, seven days a week. If the supply of blood and oxygen to the heart muscles is significantly reduced, it can have a negative effect on the heart’s function, causing damage to the heart muscle (heart attack) or even death. Established, modifiable risk factors for developing CHD include: • • • • • • •

High levels of low density lipoprotein cholesterol (LDL-C), “bad” cholesterol. Low levels of high density lipoprotein cholesterol (HDL-C), “good” cholesterol High blood pressure (hypertension) Cigarette smoking Lack of physical activity or exercise Diabetes mellitus Being overweight or obese

While spinal cord injury does not directly increase your risk, SCI may increase the risk for Coronary Heart Disease because many of the risk factors for CHD are magnified in people with SCI who: 1) tend to have low levels of regular exercise and physical activity, a risk factor noted above; 2) are living longer after their injury and therefore have a longer period of time during which to develop atherosclerosis and CHD, and 3) in some instances have high levels of bad cholesterol (LDL-C) and low levels of good cholesterol (HDL-C). To stay healthy, it is recommended that adults engage in exercise or physical activity for thirty minutes at least five days a week. Participation in regular exercise or physical activity poses unique challenges for most people with SCI. Barriers include physical limitations, access to standard and adapted exercise equipment, and transportation issues. Another lifestyle issue related to CHD risk is diet. Persons who eat a diet that is high in calories and fat content can often be overContinued on page 17


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November/December 2005

nscia chapter

Moving Mountains in Illinois

Taking on “The Rock” By Erin Hayes, Debbie Pucci, and Kristin Balfanz-Vertiz

W

hen was the last time you climbed a mountain? Moving MountainsTM is an outdoor adventure program designed for individuals with spinal cord injury. Presented by the Spinal Cord Injury Association of Illinois (SCIA–IL), the program is run by volunteers and takes place during weekends in the spring and fall at the Mississippi Palisades State Park in Savanna, Illinois. Though Moving Mountains changes slightly with each outing, the program is most well known for an activity that involves individuals with SCI using adapted equipment to climb an eighty-foot rock. Other program activities include kayaking in the backwaters of the Mississippi River, tent camping, hiking on the park trails, handcycling, cooking, and art therapy. Moving Mountains was initially created by Eric Larson and Pat Maher in 1995, and since then hundreds of people have participated. The program has evolved over time with the help of many, including people with SCI, rehabilitation professionals, climbers, kayakers, outdoor adventure experts, and other volunteers.

Moving Mountains participants are recruited by the SCIA-IL through partnerships with area rehabilitation hospitals, and both individuals with SCI and rehabilitation professionals are invited to attend. The mission of the program is to create a safe yet challenging outdoor experience for people with SCI, particularly for those who might not otherwise have access to such an opportunity. A secondary purpose is to expose rehabilitation professionals to a range of adapted outdoor experiences to better prepare them to serve their patients with SCI. In addition to these explicit program goals, for both groups, Moving Mountains serves as an excellent networking opportunity. During the course of the program, people with SCI and rehabilitation professionals come together to share information; often about how they’ve overcome barriers in their own lives or workplace. Many discussions have taken place around picnic tables and campfires — about how to improve home accessibility or facilitate a more successful rehabilitation experience. Though occurring over one weekend, the hope is that the program’s impact will extend well beyond the three days it takes place, and that participants will incorporate the experience into their daily living. In fact, the program often pushes participants with SCI to think about other goals in life. For some — particularly participants with more recent disabilities — Moving Mountains serves as a jumping off point, a place from which they can say, “I accomplished these goals, now it’s time to set and accomplish others in my life.” The program also pushes rehabilitation professionals to think more about how to better prepare their patients for an active life once they leave the hospital.

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.

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

Street Phone

E-mail (very important, if available) Please check membership level: ■ Individual with SCI/D ■ Family member ■ Individual SCI Service Provider ■ Professional ■ International (US Funds only) ■ Silver (Org/Hosp, budget less than $1 million). ■ Gold (Org/Hosp, budget greater than $1 million). ■ Platinum (Org/Hosp, budget greater than $5 million)

■ Check Enclosed ■ Credit Card (Visa, Mastercard, Amer. Exp.) Name on card Credit Card # Expiration Date My donation is $ NSCIA Member Services 901 East Willetta, Suite 2306 Phoenix, AZ 85006 Phone (602) 239-5929

included participants “learning about patients’ realities,” “how they reintegrate into the community,” their problems with inaccessibility, tricks around accessibility.” They testified to learning the “importance of certain skills that need to be emphasized in therapy (like transfers), as well as the need to focus on patients’ goals in therapy,” and that the weekend “raised awareness of post-rehab possibilities/opportunities for patients.” As a volunteer enterprise, organizing two programs each year remains an ongoing challenge. In the future we hope to continue to provide Moving Mountains for people with SCI, knowing that the program has brought much to our participants, volunteers, and even our chapter. It is an amazing experience for all, and a visible event in the community. We encourage others to think about how to begin such a program; there are many different shapes and forms that such an experience can take, many ways to provide individuals with opportunity and encouragement to meet the challenges in their lives, whatever they may be. For more information about Moving MountainsTM in Illinois, contact SCIA-IL at 708.352.6223, sciinjury@aol.com, www.sciillinois.org. For information on programming outside of Illinois, contact Eric Larson at elarson@spinalcord.org. Erin Hayes, PhD, is a Research Fellow in the School of Public Health at the University of Illinois at Chicago. Debbie Pucci, MPT, ATP is a Physical Therapist in the Wheelchair and Seating Center at the Rehabilitation Institute of Chicago. Kristin Balfanz-Vertiz, MSW, LSW is the Director of the Extended Services Department at Schwab Rehabilitation Hospital.

Moving MountainsTM is a trademark of Larson Communications Group.

Spinal Cord Injury Volunteers are Needed

Become a Member Today.

Name City, State, Zip

Whatever the specific outcome, our intention is for participants to take something lasting from the weekend. We recognize that mountains don’t just come in the form of rocks; we strive to encourage people to meet their own challenges, whatever they may be. Many components come together to create a successful Moving Mountains program. First and most obvious is the organization of activities, which involves coordinating with experienced climbers, kayakers, and a handcycling company to provide volunteers and equipment for the weekend. We make camping arrangements (which involves securing an accessible camping site and camping equipment for all participants), and attend to issues of safety and first aid, equipment (wheelchair) maintenance and, of course, food (have you ever cooked for forty people in the wilderness?). We also arrange for less physical activities, such as art therapy. While this provides something to do for those who are either waiting for or have already completed other activities, we’ve discovered that this allows people time to reflect on their experience. In 2002 we conducted an evaluation of two Moving Mountains programs. Surveys were completed by 53 participants, including 16 people with SCI and 37 able-bodied participants. Among the participants with SCI, 100% reported that they would recommend the program to others, saying it had given them “a chance to challenge themselves and their disability,” that the weekend “is good therapy for people with newly-acquired injuries,” and that it allows participants “to try new things — to realize your potential.” Rehabilitation professionals were asked what they had learned that might impact their work once they returned home. Responses

You MAY BE eligible if you are:

FREE! FREE! FREE! $100.00 $100.00 $250.00 $500.00 $1000.00

1870 years old Have been diagnosed with a Spinal Cord Injury Have had chronic neuropathic pain for at least 3 months

I am interested in supporting NSCIA with:

■ Gifts of stocks or mutual funds ■ Gifts of real estate ■ Including NSCIA in my will Toll free (800) 962-9629 Fax (602) 239-6268 e-mail: membership@spinalcord.org web site: www.spinalcord.org

The Translational Pain Research Group at the Brigham and Women‘s Hospital is conducting clinical trials that evaluate various medications to help relieve chronic neuropathic pain as a result of a Spinal Cord Injury.

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FOR MORE INFORMATION CALL 1617525PAIN (7246) OR EMAIL US AT PAINTRIALS@PARTNERS.ORG


November/December 2005

in memorium

Steven A. Towle

L

ongtime disability rights activist Steve Towle died on October 5, 2005 at the age of 53. Born in Tokyo and raised in Maryland, Steve survived a C5-6 spinal cord injury sustained while on active duty in the Air Force in 1974.

Steve Towle He served as NSCIA’s Vice President for Chapters from 1997–2003, President of the Spinal Cord Injury Network of the Metropolitan Washington Area, NSCIA’s D.C. area Chapter, for over 15 years, and it was he who first introduced current Executive Director, Marcie Roth to NSCIA in the mid–1990s. Steve was the 2005 Thomas H. “Mick”

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Countee awardee for extraordinary generosity of spirit, time, and resources in support of NSCIA, and for exemplary dedication, vision, services, and volunteerism to the SCI community at large. Steve served as a key partner in the NIDRR-funded Rehabilitation Research and Training Center on SCI: Promoting Health and Preventing Complications through Exercise. He was the Washington Liaison for the National Association on Alcohol, Drugs & Disability, Vice-Chair of the Montgomery County Maryland Commission on People with Disabilities, and an active member of the Spinal Cord Injury Consortium of the Greater Washington D.C. area. He chaired the Maryland Statewide Independent Living Council for several years and co-founded Capitol Area ADAPT. For those who knew Steve, his passion for justice, his magnificent, dry sense of humor, and his ability to say just the right thing at just the right time will be missed most of all. Steve had a huge impact on advancing rights and opportunities for people with disabilities, though few would know that he had played such a significant role. Most people will remember him flying past them in his bright red Bounder power chair, or quietly listening to a discussion on almost any topic before finally delivering a succinct summary and perfect solution. With Steve’s death, NSCIA has lost a true friend, but his passionate leadership will never be forgotten.

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November/December 2005

from the edge

wheelchair takes luck, a knowledgeable and effective advocate, or both. Occupational or physical therapy teaching programs pay insufficient attention to AT, offering little hands-on experience. Some clinicians gain more skill through the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) Assistive Technology Provider (ATP) and Rehabilitation Engineering Technology (RET) credentials. Many people with SCI find little support following rehabilitation. Outpatient services are rationed by most providers. The Department of Veterans Affairs (VA) Spinal Cord Injury Centers are an exception, allowing veterans with SCI to stay longer and return at any time for followup care. Some privately-funded systems try to accomplish this, but only serve a small percentage of the population of people with SCI. Amidst concerns about rising costs, and fraud and abuse by a few unscrupulous suppliers and clinicians, Medicare and others insurers are making it more difficult to obtain needed AT — items as basic as wheelchairs, cushions, or driving aids. Artificial barriers are created by such outdated restrictions as Medicare’s “useful in the home” criteria for wheelchair prescriptions — a misguided regulators’ interpretation. Research funding for assistive technology is totally inadequate, be it the private sector, state, or federal government. The entire annual federal budget for rehabilitation research wouldn’t buy a single state-of-

the-art military airplane. Assistive technology is only a fraction of that amount. The National Institutes for Health (NIH) nearly doubled its budget over five years, but the funding for assistive technology research hardly received a bump. The Small Business Innovative Research (SBIR) program — which facilitates creating the businesses which bring new ideas to market — keeps growing, but doesn't support the science itself which is necessary to create leap-forward technologies. The National Institute on Disability Rehabilitation and Research (NIDRR) is arguably best at funding assistive technology research, but few people with SCI direct these programs or their major grants. The same can be said for the Veterans Health Administration, the National Science Foundation, or the Department of Defense, all involved in SCI-related projects. Most health care providers and health policy analysts do not understand assistive technology, but they exercise significant control over our access to it — and therefore our lives. And let’s face it, U.S. healthcare policy towards people with SCI is largely founded on the antiquated idea that our lives are largely not worth living, and that medical science has failed to find a cure. Healthcare dollars and even research funds are focused on acute care and on cure — in other words on preserving life or on offering a cure immediately following SCI. When I was lying in a hospital bed with my fresh spinal cord injury, a friend half-joked that “ditch digger” is out; you’ll have to work with your brain instead of your back. We laughed, but his comment carried two important mes-

sages: I would go back to work, and I would need to learn something that didn’t require strenuous physical labor. We need to convey the importance of getting people into the workplace and promoting them through the ranks. More people with SCI are working, but still too few. The barriers to employment remain substantial, and I believe that is largely due to misperceptions of society about the potential capabilities of people with SCI — made possible, often, by appropriate assistive technologies, starting with the optimal wheelchair. There is a lack of commitment to provide the resources to effect real change, where the technology available for returning to work needs to be part of a larger plan. More of us need to be involved in advocating for appropriate public policy, study physical or occupational therapy, become an SCI physician or rehabilitation counselor or an engineer. We need to exercise greater control over funding priorities, review panels, and agency leadership. Funding for SCI research does not have sufficient participation of people with SCI. Most decisions are made in our absence, but we must be intimately involved in defining what is appropriate, and ensure full availability of continuing advances in technology. We should lead a coalition of all involved parties to improve public policy related to AT, be it research, development, funding, education, employment, or rehabilitation. No one knows better than we do ourselves.

denies a claim, you are entitled to appeal that decision under state or federal law. Insurance plans from large corporations or unions are typically self-funded, and governed by a very complex federal statute known as ERISA (the Employment Retirement Income Security Act). Under ERISA, your employer may enter into any type of insurance coverage plan as long as they do not discriminate or arbitrarily enforce the policy. The insurance carrier in this situation only “administers” the claims. Your right to appeal a denial of a claim under ERISA is limited normally to two appeals with that carrier. If the denial is upheld you have the right to bring a lawsuit in Federal Court under the ERISA Statute. However, under current law, if you succeed you will only recover the cost of the treatment, surgery, or equipment, and not the attorney and expert witness fees you incurred during the lawsuit. Most self-insured carriers are aware that an insured’s likelihood to sue is very small so they will hold firm on claim denials. In the case of non self-funded or HMO plans where your employer only pays premiums, state law governs claims issues — and every state is different. Some states such as New York and California allow appeals to an independent external review agency once an insurance carrier has denied a claim. The laws in those states mandate that if a treatment is medically necessary, even if specifi-

cally excluded by the plan, it must be covered and the denial reversed. When you submit a claim, whether it is for an extension of rehabilitation, medical treatment, or equipment, you have the right to appeal a denial of that claim. Just because your insurance company says you are only entitled to seven weeks of rehabilitation or that certain medical procedures or equipment are not covered does not necessarily mean they are legally correct. Taking “no” for an answer is a dangerous practice. Never rely on the word of a claim representative who denies coverage. Read your policy. Mistakes are very common. The written policy is the deciding factor. Nor should you count on your doctor or hospital to fight for your rights or appeal your denial. They are dealing with thousands of claims. It’s your responsibility to ensure that you are being protected. Review your policy for requirements when submitting claims and be aware of deadlines to file appeals. Always file by certified mail to ensure — and hold proof — that your filing was received. Your insurance policy will outline the number of appeals that you are afforded, to whom they must be sent, and whether you are entitled to an external independent appeal. You also have the right at any point to file a complaint with the Insurance Commission in your state — as well as the state where the insurance carrier is

based — and the United States Department of Labor if your plan is self-funded. Complaints are taken very seriously. Grounds for complaints can include delays in processing claims and/or appeals, improper treatment, or discrimination. The way you were injured can impact your healthcare benefits and financial compensation. For example, injuries on the job are covered by Worker’s Compensation, which means you cannot sue your employer for your injury. However, there may be a third party responsible for your claim if a defective machine caused your injury, or the premises in which you were injured is not owned or maintained by your employer. You may be able to recover costs of your medical care beyond your health insurance policy if defective products or safety devices were involved in your injury. In automobile accidents, the vehicle manufacturer at fault would be liable for claims. These types of claims may allow recovery of damages for pain and suffering and future medical expenses. You always have legal recourse, whether it be appealing a denied claim, filing for damages against the entity that caused your injury, or even a claim under the Americans with Disabilities Act. If at any time you have any questions regarding insurance issues you should speak with an attorney who specializes in that area. Don’t let an insurance company tell you otherwise.

Access to Assistive Technology A Call for Action By Rory Cooper, PhD

I

am a scientist, trained to be somewhat distant from my work. But if anything raises my passion it is assistive technology. “AT” is absolutely critical to living a full life with a spinal cord injury, and is largely misunderstood by the greater society. It is certainly under-appreciated. And one of the most critical components of AT is the wheelchair. As the quality of rehabilitation has declined, with reductions in services and shorter lengths of stay, many people get shoved out so fast that they aren’t equipped with the skills to move beyond basic self-care. It astonishes me how few people with paraplegia know how to do a wheelie or who still use anti-tip wheels on their wheelchairs. People without sufficient family support or who don’t progress fast enough are simply sent to a nursing home when the time comes to be discharged from rehab. This is just institutionalization in disguise — shortsighted at best and, in an enlightened society, could be viewed as a human rights violation. Getting a properly-adjusted and fitted

Got You Covered Your Insurance Rights By Gary Viscio, NSCIA Board Member

I

nsurance plan coverage is sometimes the last thing on one’s mind after sustaining a traumatic, diabling injury. But being prepared is truly the only way to ensure that you or your loved one will be cared for. A will, a living will, or a healthcare proxy should be in place and updated. Insurance, such as mortgage insurance, long term disability, or a similar insurance that will pay your mortgage payments, credit card, and other debt are also important and often overlooked. If you are chronically disabled, will your health insurance coverage end if your employment ceases? The answer is normally yes. Some carriers will intentionally delay claims waiting for your coverage to end. You will likely have to go on a disability or Medicaid policy, then the original insurer will not have to bear any additional costs. Make no mistake about it, insurance companies are in the business of turning a profit, but if your current policy excludes, limits, or

Rory Cooper, T7-8 paraplegia, a recent NSCIA SCI Hall of Fame honoree, heads the Human Engineering Research Lab at the University of Pittsburgh in Pennsylvania.


November/December 2005

Your First Chair... Continued from page 1

armrest styles (desk or full length) and height, adult or narrow width, upholstery color, the size of the caster wheels, or types of quad pegs. By the time Dennis Bossman was injured in the early 80s, the Everest & Jennings monopoly had been broken, lightweight aluminum had been introduced, and the chair revolution had begun. Quadra and then Quickie were the chairs of choice, and options had expanded to include such exotic features as caster locks, wheelie bars, brake handle choices and locations, numerous colors, and either rigid or folding frames. In the 90s the choices expanded much further, with the introduction of titanium, composite materials, suspensions, a huge offering of posture-enhancing backs and lateral supports, even power-assist wheels. Power chair options were also evolving, with quiet, direct drive motors, drive wheel choices (front, middle, or rear), smaller and more compact bases, tilts, reclines, elevating seats, etc. In the process, these chariots became much more stylish than the clunky chrome behemoths of yesteryear. It’s great to have so many choices! And it’s stressful to have so many choices! Your level of function and lifestyle will help narrow the options down quickly. Part of what’s kept Anne Herman independent all these years has been swing-away footrests — which get her closer to wherever she’s transferring — and padded desk style armrests that give her something to hold on to, making her transfers far safer and easier. Sometimes she’s found that accessories can have unintended consequences, like the lateral supports on her chair back that helped her scoliosis but interfered with transfers. The lesson? Try before you buy. How much driving will you be doing? How many times each day will you be in and out of the car? The answers might determine whether you want a rigid frame chair that needs to be dismantled or one that easily folds up and can be pulled into the car. If you will drive a van from your chair, you’ll need a product which accepts a lock-down. For power chair users the advice “try before you buy” definitely applies; it’s not uncommon for a chair to make your home more inaccessible. A mid-wheel drive chair — which can essentially rotate on a dime — might be the only type that will make the

Heart Disease...

SCILife editor Gary Karp in his first chair, 1973. turn to get into your hallway bathroom. Posture aids, pressure relief, and how the chair is controlled (joystick, head rest, sipand-puff ) all enter into the purchase equation. As with manual wheelchairs, more accessibility indoors sometimes means less maneuverability outdoors. “Trial and error and listening to the pros can teach you most of what you need to know,” says Brian Johnston. By the time those first lightweight chairs became available, Johnston, a totally independent C5 quad, knew what he wanted and needed. He still needed the armrests for security. He made his own set of brakes and a pair of grade-aides to help him on hills. He found a company to coat his rims with some rough rubber rather than the standard vinyl, which gets slick when wet. He slowly eliminated the accessories when they became too much of a hassle or he found he could do without them. And he experimented. “I tried different adjustments to the chair. I found that maneuvering the chair was easier if I lowered my butt.” With so many choices, following the advice of OTs and PTs can prove invaluable. They know what works, what causes trouble, what fits, what breaks down and, maybe most important, what gets paid for. But they need your help to identify the wheelchair that will be as liberating as possible for you. In this new age of wide choice, learning as much as you can will translate to comfort and independence. •

Continued from page 13

weight or obese and have high levels of LDLC in the blood. How can you reduce your risk? Before beginning any lifestyle changes, you should always discuss the idea with your doctor, but here are some ways to improve your heart health: •

• •

Try to be physically active for thirty minutes, five days each week. This could involve several shorter sessions during the day (e.g., three ten-minute sessions) or one session of thirty minutes or more of continuous activity. Stop smoking! Know your blood pressure and work with your doctor to keep it below 140/90 mm Hg.

• •

Know your bad cholesterol value (LDL-C). A value of less than 130 mg/dL is recommended and less than 100 mg/dL is optimal. Know your good cholesterol value (HDLC). A value of less than 40 mg/dL is low and 60 mg/dL or higher is good. Eat a diet that is low in saturated fats (e.g., meats and dairy products) and trans-fats (e.g., certain types of margarines and oils), and high in grains, fruits, and vegetables. Do not eat more calories than is needed to meet your daily energy needs.

Dr. Larry Hamm is a Senior Research Scientist at the National Rehabilitation Hospital and Program Director of the Washington Heart Medical Fitness and Wellness Center in Washington, D.C. For the full consumer fact sheet on CHD and SCI, visit scihealth.org/publications/index.php and click on “Consumer Publications” at the bottom.

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November/December 2005

NSCIA CHAPTER NETWORK ARIZONA Arizona United Spinal Cord Injury Association 901 E. Willetta, Ste. 2306, Phoenix, Arizona, 85006 Telephone: 602.239.5929 Telephone:877.778.6588 Fax: 602.239.6268 Website: www.azspinal.org Email: info@azspinal.org Contact: Paul Mortensen CALIFORNIA WYNGS, NSCIA 7900 Nelson Rd., Panorama City, California, 91402 Telephone: 818.267.3031 Fax: 818.267.3095 Website: www.wyngs.org Email: wyngs4sci@msn.com Contact: Michele Altamirano CONNECTICUT Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, Connecticut, 6492 Telephone: 203.284.1045 Website: www.sciact.org Email: nscia@sciact.org Contact: Bill Mancini DISTRICT OF COLUMBIA SCI Network of Metropolitan Washington, NSCIA Plaza West 9, 51 Monroe Street, Rockville, DC, 20850 Telephone: 301.424.8335 Fax: 301.424.8858 Website: www.spinalcordinjury.net Email: jessiep@iben.com Contact: Jessie Parker E-mail: david@ecnv.org Contact: David Burds

FLORIDA FSCIA, Spinal Cord Support Group of Collier County, Inc. 313 Spider Lily Lane, Naples, Florida, 34119 Telephone: 239.825.9999 Email: spinal@naples.net Contact: Mindy Adaspe ILLINOIS Spinal Cord Injury Association of Illinois 1032 South LaGrange Road, LaGrange, Illinois, 60525 Telephone: 708.352.6223 Fax: 708.352.9065 Website: www.sci-illinois.org Email: SCIInjury@aol.com Contact: Mercedes Rauen INDIANA Calumet Region Chapter, NSCIA 2109 Cleveland St., Gary, Indiana, 64404 Telephone: 219.944.8037 Email: rjackson@ci.gary.in.us Contact: Lucille Hightower KENTUCKY Derby City Area Chapter, NSCIA 1518 Herr Ln., Louisville, Kentucky, 40222 Telephone: 502.589.6620 E-mail: dallgood@calky.org Contact: David Allgood

MASSACHUSETTS Greater Boston Chapter, NSCIA HEALTHSOUTH, New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 1801 Telephone: 781.933.8666 Fax: 781.933.0043 Website: www.sciboston.com E-mail: sciboston@aol.com Contact: Kevin Gibson NEW HAMPSHIRE New Hampshire Chapter, NSCIA P.O. Box #197, No. Salem, NH 03073 Telephone: 603.479.0560 Fax: 928.438.9607 Website: www.nhspinal.org E-mail: lthompson@nhspinal.org Contact: Lisa Thompson NEW YORK New York City Chapter, NSCIA Telephone: 212.659.9369 Fax: 212.348.5902 Email: NYCspinal@NYCspinal.org Website: NYCspinal.org Contact: James Cesario Telephone: 914.969-7257 (H) Telephone: 914.325-3059 (C) Contact: John Moynihan NEW YORK Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Telephone: 585.275.6097 Contact: Karen Genett Email: rochesternscia@yahoo.com Telephone: 585.275.6347 Contact: Kathy Flannagan Email: ascaramu@frontiernet.net Contact: Amy Scaramuzzino

NEW YORK New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine, 1 Gustave L. Levy Place, Box 1240, New York, New York, 10029 Phone: (212) 659-9369 Fax: (212) 348-5902 Website: www.nycspinal.org E-mail: nycscia@yahoo.com Contact: James Cesario Phone: (914) 969-7257 Contact: John Moynihan NORTH CAROLINA NCSCIA 3701 Wake Forest Rd., Raleigh, North Carolina, 27609 Telephone: 919.350.4172 E-mail: dmyers8@triad.rr.com Contact: Deborah Myers E-mail: kvasquez@wakemed.org Contact: Karen Vasquez OHIO Northwest Ohio Chapter, NSCIA 10117 Woodmont Way, Perrysburg, Ohio, 43551 Telephone: 419.872.5347 Website: www.spinalrap.org E-mail: jbeckley@woh.rr.com Contact: Jim Beckley E-mail: DOstra1338@aol.com Contact: Debra Ostrander SOUTH CAROLINA NSCIA South Carolina Chapter 2009 Hampton St., Suite A Columbia, SC 29204 Telephone: 866.445.5509 Toll free: 803.252.2198 Fax: 803.376.4156 Website: www.scscia.org

TEXAS Rio Grande Chapter Highlands Regional Rehabilitation Hospital 1395 George Dieter, El Paso, TX 79936 Telephone: 915.532.3004 Contact: Sukie Armendariz, Telephone: 915.298.7241 Contact: Ron Prieto

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

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

For a current listing of Chapters and Support Groups, visit www.spinalcord.org, or call (800) 962-9629.

NSCIA SUPPORT GROUP NETWORK CALIFORNIA Leon S. Peter’s Rehabilitation Center Community Medical Center Fresno P.O. Box 1232, Fresno, California, 93715 Telephone: 559.459.6000 ext. 5783 E-mail: rgreenberg@cmc.org Contact:Ray Greenberg

CALIFORNIA St. Joseph’s General Hospital 2200 Harrison Ave., Eureka, California, 95501 Telephone: 707.445.8404 E-mail: richbsherry@yahoo.com Contact: Richard Sherry

FLORIDA Florida Rehabilitation and Sports Medicine 5165 Adanson St., Orlando, Florida, 32804 Telephone: 407.823.2967 Contact: Robin Kohn Telephone: 407.623.1070 Contact: Carl Miller

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

FLORIDA HEALTHSOUTH Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, Florida, 5315 Telephone: 850.656.4800 Contact: JoAnna Rodgers-Green FLORIDA Tampa Bay Area Support Group Healthsouth 90 Clearwater Largo Rd., Largo, Florida, 33770 Telephone: 800.995.8544 Telephone: 813.844.4286 Fax: 813.844.4322 Website: www.flspinalcord.us E-mail: info@flspinalcord.us Telephone: 727.821.9131 Contact: Barry Marshall

MARYLAND Kernan Hospital SCI Support Group 2200 Kernan Drive, Baltimore, Maryland, 21207 Telephone: 410.448.6307 Website: www.kernanhospital.com/kernan E-mail: lmwilson123@yahoo.com Contact: Lisa Wilson

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

PENNSYLVANIA HEALTHSOUTH Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, Pennsylvania, 16602 Telephone: 800.873.4220

PENNSYLVANIA HEALTHSOUTH Greater Pittsburgh Rehabilitation Hospital 2380 McGinley Rd., Monroeville, Pennsylvania, 15146 Telephone: 800.695.4774 Telephone: 412.856.2584 E-mail: kristy.nauman@healthsouth.com Contact: Kristy Nauman, P.T.

GEORGIA Columbus SCI Support Group Telephone: 706.322.9039 E-mail: rvcost@mchsi.com Contact: Ramona Cost

MISSOURI Southwest Center for Independent Living 2864 S. Nettleson Ave., Springfield, Missouri, 65807 Telephone: 417.886.1188 Telephone: 417.269.6829 Website: www.paraquad.org E-mail: mtrimble@swcil.org Contact: Marion Trimble

PENNSYLVANIA Delaware Valley Spinal Cord Injury Association 2610 Belmont Ave., Philadelphia, Pennsylvania, 19131 Telephone: 215.477.4946 Contact: Bruce McElrath

GEORGIA HEALTHSOUTH Central GA Rehab Hospital 3351 Northside Dr., Macon, Georgia, 31210 Telephone: 800.491.3550, ext. 643 Telephone: 478.471.3500, ext. 643 Fax: 478.477.6223 Contact: Kathy Combs

OHIO Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, Ohio, 44484 Telephone: 330.856.5861 (H) Telephone: 330.856.4303 (W) Contact: Mike Logan Telephone: 330.841.3700 Contact: Sue Joy

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

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

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

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

If you cannot find a chapter or support group in your area, why not start your own? Contact the National Office for assistance on our business line 301.214.4006 or our Helpline: 800.962.9629.


November/December 2005

NEW PRODUCT “The comfort and support I achieve with Better Pant is perfect for my active lifestyle.” David Wagner, Gold Medalist 2004 Paralympics

Better Pant™ Leg Bag Holder & Comfortable Unisex Undergarment Used with external collection systems (Condom, Foley or Superpubic). Holds 500ml or 1000ml leg bags without leg straps! Latex free. Cotton/Poly/Spandex. Machine washable. Black, Gray or White; Sizes Small thru 3X Patent Pending

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Call (888) 833-8875 Or www.elderstore.com and enter QUEST under coupon for discount. Uro Concepts Inc.

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Do you have questions? We have answers.

THE NSCIA RESOURCE CENTER We can help you with: Seeking local resources NSCIA chapter and support group locations Non-NSCIA sources of support Locating rehabilitation facilities Funding information and insurance guidelines Relevant web sites

Families with new injuries are given top priority. priority.

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

www.betterpant.com

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November/December 2005

SCILife, Vol. 2, No. 5  

November/December, 2005. Read about the experiences of three hurricane survivors with SCI on Page 8 For additional information on advertisi...

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