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Vol. 6, No. 6

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Vol. 6, No. 6

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

Maher Honored with 2009 Henry Betts M.D. Employment Advocacy Award

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n December 3, 2009, the Rehabilitation Institute of Chicago (RIC) vocational rehabilitation department presented the Henry Betts M.D. Employment Advocacy Award to Patrick Maher, president of the board of directors for National Spinal Cord Injury Association (NSCIA) and director of nAblement, an information technology company which supports qualified candidates with disabilities in the information technology workforce. This award is given to individuals and/or organizations that have made significant contributions towards promoting employment for people with disabilities by providing job training, job opportunities and advocacy efforts. “I am truly gratified by this honor,” said Maher, “and will aspire to honor both Dr. Betts and RIC by working even more diligently with our many fine part-

ners as well as my colleagues at SPR to strengthen opportunities for passionate and qualified candidates with disabilities to achieve their career goals.” In addition to his many business accomplishments and his role with NSCIA, Maher has also served as Chair of the SCI Hall of Fame selection committee in 2006. Founded in 1948, the National Spinal Cord Injury Association is the nation’s oldest and largest civilian organization dedicated to improving the quality of life for all Americans living with spinal cord injury and disease (SCI/D) and their families. He has also served on and chaired a Chicago area Center for Independent Living (CIL) board as well as on the IL SCI Association’s board. In 1994, he co-founded Moving Mountains, a unique outdoor-based growth and adventure program for individuals with spinal cord in-

Choosing a Power Wheelchair: Pick the Right Provider First

going support and repair. So how does one go about selecting the right provider? Here are some questions to ask. Is the provider accredited by a recognized organization? There are accrediting organizations that specialize in inspecting and credentialing businesses that provide home medical equipment, a broad category that includes power wheelchairs. In fact, Medicare now requires all of its power wheelchair providers to be accredited by one of ten accrediting agencies. A successful accreditation indicates that the business has policies and regulations in place to provide quality products and services and allows itself to be periodically inspected by an independent agency. Only deal with companies that have obtained this type of accreditation. The ten organizations that are qualified to accredit home medical equipment companies are: Community Health Accreditation Program (chapinc.org); The Joint Commission (jointcommission.org); Commission on Accreditation of Rehabilitation Facilities (carf.org/dmepos); HealthCare Quality Association on Accreditation (hqaa.org); The Compliance Team, Inc. (exemplaryprovider. com); Accreditation Commission for Health

By Don Clayback, NCART Executive Director

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f you are looking for power mobility in today’s complex market, the selection of the company to buy your power wheelchair from is as important as the selection of the product itself. Some would say even more important. Why? Because the qualifications and experience of the provider will be a major factor in ensuring that the product selected is the most appropriate. A successful outcome involves meeting your seating and mobility needs as well as addressing financial, lifestyle, and quality-of-life considerations. You should be looking at both the initial purchase and at the longer term need for on-

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jury or other disabilities and the healthcare professionals who work with them Ninety guests from the business community attended the event to honor Pat and recognize his numerous accomplishments. Employment awards were also given to three Chicago area companies who have assisted the vocational rehabilitation department by hiring qualified candidates or accommodating their employees who have experienced serious injuries or illnesses. Those companies are CVS Caremark, GFS Fence, Guardrail and Signage and PepsiCo. Maher is a sales and marketing executive who has also served the disability community extensively since the onset of his spinal cord injury in 1981. He was injured while studying at the University of Illinois at Urbana-Champaign and returned to complete his B.S. from the College of Commerce and Business Administration following his rehabilitation at the Rehabilitation Institute of Chicago. Maher has represented a wide breadth of organizations during his professional career as a sales executive, including a Fortune 500 healthcare organization, a rehabilitation

Pam Capraro (left) and Elliot Roth (right) present award to Maher.

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Power wheelchairs must be configured to allow operation inside the home and provide accessibility to tables and work surfaces.


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Vol. 6, No. 6

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Vol. 6, No. 6

chapters and support groups SCILife STAFF MANAGING EDITOR: K. Eric Larson STAFF WRITER: Santina Muha Design and Layout: Nikolai Alexeev Advertising Sales: Joyce Parker Data Input: Bonnie J. Haynes

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

Board Of Directors Executive Committee

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

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

General Counsel Leonard Zandrow, Esquire

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

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

For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston TX 77219-1401 tel: 713.526.6900 fax: 713.526.7787 email: chaynes@hdipub.com www.hdipub.com SCILife © 2010

Where Would I be without NSCIA? By David Estrada NSCIA Vice President for Chapters and Support Groups; President, Greater Boston Chapter, NSCIA

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would like to introduce myself and let you all know that as the new vice president of chapters and support groups, I look forward to developing a stronger relationship with my fellow affiliates of NSCIA. I firmly believe that we can all learn from one another and that there truly is strength in numbers. We all share common goals as a result of the mission that was bestowed upon us when we decided to form chapters and officially became part of the oldest and largest grassroots organization in the country that helps people with SCI/D. I want to share with you something I wrote a couple of years ago, something that I feel still embodies all of what each of us strives to do across the country for others living with SCI/D. “As I write this, I can’t help but wonder where I would be right now had it not been

Making Choices and Having Choices to Make By Joan Manley, Ms Wheelchair Virginia 2009-10

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his is the second in a series of articles written by Ms. Wheelchair titleholders, sharing their experiences with their platforms and the work they have done to improve the lives of those living as wheelchair users. Ms Wheelchair Virginia is a 501(c)3 program whose mission is to raise awareness of the abilities and needs of those with disabilities. Each year, one woman is selected to be an ambassador to educate and advocate for Virginians with disabilities in order to influence attitudes and architecture for all Virginians. In the Spring of 2009, I was awarded the title of Ms Wheelchair Virginia. During my reign, I have logged hundreds of miles and met many people throughout the state -- sharing my platform, Making Choices and Having Choices to Make… reminding individuals of their right to choose; reminding leaders of the need for adequate choices.

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for the Greater Boston Chapter (GBC) of the National Spinal Cord Injury Association. After being struck by a car and paralyzed while riding my motorcycle home from work, I had no clue what the rest of my life would be like, especially being a wheelchair user. Luckily, I was introduced to the GBC while undergoing therapy at a rehabilitation hospital in Boston. I knew that I wanted to finish my senior year of college, so the GBC assisted me in finding a wheelchair accessible apartment on the campus of Northeastern University. To my good fortune, I wound up meeting a guy who had a similar spinal cord injury five years prior to mine. Within a few weeks, he taught me everything that doctors, nurses, physical and occupational therapists tried to teach me during my three months in the rehabilitation hospital. Ultimately, he became my first peer mentor. He introduced me to wheelchair racing and I completed twelve marathons in five years. He brought me out to bars and I watched in amazement as he would meet & establish relationships with women, even though he was a wheelchair user. He built up so much of the self-confidence that I initially lost after my injury that I took on my greatest challenge: Law School. Three years later I graduated and passed the bar exam on my first try. My mentor went on to get his MBA and now works for Medtronic, the makers of Baclofin and insulin pumps. Having this mentorship allowed me to reflect on the limitations I set up for myself as a person prior to my injury and the endless possibilities of post injury life. Although I swore that I’d never go back to the hospital where I rehabbed, as I became more involved with the GBC’s Peer Visitation Program, I realized that it would be a disservice to the newly injured; those who would benefit from the knowledge bestowed upon

me by my mentor. Another realization quickly occurred as I continued to root myself into the GBC. There were a handful of people who have “carried” this organization over years. The Greater Boston Chapter of the NSICA started out as a place for persons with SCI to come and share concerns, enjoy social events and ultimately feel like they “fit in.” The GBC continues to do that and so much more. We have two offices in two SCI rehabilitation hospitals, four part-time employees and over 30 trained peer volunteers. We continue to work with health care professionals to improve the treatment that persons with SCI receive. This enables us to not only monitor treatment, but also improve the overall quality of care that patients receive and deserve. But these hard working, dedicated people can’t do it alone. We continue to seek others who can make the commitment to continue to help those with SCI live healthy, fulfilling lives and bring greater awareness to the general population. We did it at the State House in 2004 with the passage of the Spinal Cord Injury Research Trust Fund and Spinal Cord Injury Awareness Month. With your assistance, we can continue to offer our programs and services to everyone living with a spinal cord injury in Massachusetts. Please consider donating your time and/or money to our organization today. Thank you.” David Estrada was elected to the position of vice president of chapters and support groups recently at the 2009 annual meeting of the NSCIA Chapter Liaison Committee. Estrada succeeds Debbie Myers, who served in that post for the previous three years. Myers will continue to serve on the board as a director at large.

In 1984, I became a spinal cord Injury quadriplegic as the result of an automobile accident caused by a drunk driver. At that time, I saw no choices. But as I adjusted to my disability, I developed skills to live independently, and eventually began to work with my local and state community to improve accessibility and remove barriers to independent living. I am committed to making independent living a realistic option for people with disabilities so they may become integral members of the community. I understand the sadness and frustration of experiencing a loss of function; I understand the joy and satisfaction of learning new ways to accomplish both simple and sophisticated goals. I found the tools and strategies that help me and I hope to share ideas and resources with all I meet. We are most fortunate to live in an era of sophisticated technology and clever adaptive devices. We need information about them and how to access them. We need information about services that will support our efforts to live independently in the community….affordable, accessible housing and personal care aides to help us with activities of daily living. We need affordable transportation that is available for more than just a trip to the doctor….we want to work and volunteer and socialize. I worry about those who live in nursing homes if they don’t know there are other options; and those who stay home because they don’t know about available transporta-

tion or can’t afford it or access it; and those who miss out on opportunities to be productive, contributing members of society because employers are unaware of work incentives, and those who go without basic and appropriate care because they don’t have a personal care aide. During my remaining year, I will continue to meet with community groups, state and local elected officials and program leaders to promote accessible, affordable and available services so that Virginians with disabilities can become fully participating members of the community. The state of Virginia is taking steps to reach out to those with disabilities to inform individuals about services and resources: developing a web portal called Virginia Easy Access, www.easyaccess.virginia.gov which provides disabilities-related information; by adopting person-centered practices that respect the individual as the decision-maker; by creating new on-line tools such as the Aged, Blind, and Disabled Medicaid application form. Virginia’s Olmstead Initiative, www. olmsteadva.com, has generated Virginia’s Community Integration Strategic Plan which identifies barriers and solutions to community integration and works strategically to implement. Communities are abundant with opportunities which are or can be inclusive. It is our right and responsibility, as individuals with disabilities, to challenge these programs to offer universal access for all.


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Vol. 6, No. 6 As 2009 draws to a close, I want to highlight just a few of our recent accomplishments. In the past 12 months alone, we have:

from the executive director

Why We Need You!

By K. Eric Larson, • Executive Director and CEO, NSCIA

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SCIA has brought great meaning to my life in the more than 15 years I’ve been part of this organization. And, much more importantly, it has brought critical, sometimes life-saving support, to hundreds of thousands of people living with spinal cord injury and disease, and to their families. It’s been a richly rewarding experience for me and one in which I am very fortunate to have played a role. Approximately six million people in the United States are living with paralysis. NSCIA is the leading nonprofit provider of education, advocacy, research and resources to support people with spinal cord injury and disease (SCI/D), empowering them to achieve their highest level of independence, health, and quality of life.

Grown membership to more than 24,000 and kept it FREE for individuals. Educated and informed our members through publications like SCILife and SCI e-news. Connected thousands of individuals with information and resources to help them achieve the highest quality of life. Represented you at the highest levels in meetings with top White House officials, elected representatives and key national agencies. Launched our upgraded and rebranded resource center, www.spinalcordcentral.org to help more people navigate the many challenges of living with a spinal cord injury. Created www.spinalcordadvocates.org as part of a public policy collaboration with United Spinal Association that gives people with SCI/D a stronger voice in the debate on healthcare and critical legislation that impacts their life. Worked with the business community as we led a major new initiative to improve consumer access to complex rehabilitation equipment and services that has just been endorsed by three major trade associations.

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Added to our network of local Chapters and Support Groups with new chapters serving Michigan, Kansas, Missouri and Tennessee. Represented consumers with spinal cord injury and disease on the steering committee of a planned State of the Science Conference on Spinal Cord Injury Rehabilitation to define an agenda for SCI rehabilitation research and development for the next decade by examining cutting edge innovations and research findings that have the potential to change practice and policies and improve rehabilitation outcomes for individuals with spinal cord injury, and to stimulate national and international collaboration in research and development. Attended consumer. Supported the 2nd Annual Disability Leadership & Policy Summit hosted by United Spinal Association at Hofstra University to promote an exchange of ideas between people with disabilities and public officials, disability rights advocates, educators, transportation providers, business leaders, and health and human service professionals. Continued an active leadership role in the Spinal Cord Leaders Council

We accomplish these great successes with limited financial resources – and we’re proud of that. But to effectively continue our mission of empowering people living

with spinal cord injury and disease, we need your involvement and support!

Lives literally depend on NSCIA…and that’s why we need you.

If you were able to make a financial gift in 2009, I thank you from the bottom of my heart. That gift, whatever the amount, will help us continue to fulfill our mission of empowering Americans with spinal cord injury and disease to achieve the highest possible quality of life. Traditionally, it is the end of the year when we are most likely to think about giving gifts – whether to our friends and family, or to charitable organizations like NSCIA who depend on our gifts to continue operations for the causes we understand and value. But I am challenging you all to go beyond that. Whether you have recently sent us a gift, or if you haven’t done so for a while, I’m urging you to join me in making a gift to NSCIA to kick off the new year. In this time of economic uncertainty every dollar makes a huge difference in the lives of people living with SCI/D…and those that will in the future. Simply put, it takes the resources of caring people like us for NSCIA to be there when our help is needed. Donations can be made simply, and safely, online at www.spinalcord.org or by mail to: NSCIA, 0ne Church Street, Suite 600, Rockville, MD 20850. Thank you in advance for your generosity. May the year ahead bring you much fulfillment and happiness!

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Vol. 6, No. 6

from the president

The Sky is NOT Falling By Patrick Maher, President, NSCIA Board of Directors

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e’ve all heard, read, embraced or at times dismissed the many references, adages, or sayings around the theme of “next year” – wait ‘til next year, it’s a new year, it’s a fresh year, this is our year – and on and on. I know that we can relate at NSCIA. I flatter myself that I’m not one to dismiss the here and now and look only to the future. After all, 2009 was a successful year on many fronts for us, thanks in part to many, but clearly driven by the steady and creative leadership of our CEO, Eric Larson. Exemplary of this, we strengthened our extraordinary partnership with United Spinal Association and launched both Spinal Cord Central (www.spinalcordcentral.org), our unique e-community and resource center for members and friends, and Spinal Cord Advocates (www.spinalcordadvocates.org), our community for driving grass roots’ efforts and knowledge related to critical legislation, networking and support that impacts all of our lives. And, we

legal How to Maximize your Gift to the NSCIA By Len Zandrow, NSCIA General Counsel

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s the calendar year ends and tax season approaches this spring, many people consider making charitable donations and their related tax implications. This article briefly outlines some of the relevant factors for members, friends and supporters contributing to the NSCIA.

Tax-Deductible Donations.

The simplest and most common form of contribution is an out-right gift of cash or property. Since the NSCIA is a Section 501(c)(3) corporation under the Internal Revenue Service’s (“IRS”) guidelines, any donations to the organization are tax-deductible. Such contributions can also be a way to avoid capital gains tax on gifts of appreciated property. Personal or corporate checks are perhaps the most conventional means of making

are approaching the 25,000 member mark! We helped drive a critical review of policy through a grass roots effort related to the provision of complex rehab – including appropriate wheelchairs to enhance quality of life – and much, much more. And we achieved all of this in what is commonly accepted as the worst economic environment since the Great Depression! The obvious question that comes to my mind, then, is what great milestones can NSCIA achieve in a more forgiving environment as we embark on our next 60 years? I can assure you that the board and staff have our wishes. I’m sure you have yours as well. Some of my passions are that we continue to drive this notion of a cookie cutter complex rehab process and provision from consideration in the halls of power. Complex rehab is just that – complex – and critical to health and well-being for hundreds of thousands of Americans living with SCI/D. We must be assured that everyone with a genuine need for this equipment can be serviced by a reputable and qualified DME provider. I agree that there is waste and fraud in the current system that must also be rooted out – that’s in everyone’s best interest – but a small, elite group of providers is illogical and would inevitably sacrifice quality and service for up-front cost to the system. And the cost savings would be short-lived, with the most vulnerable users of complex wheelchairs and related equipment prone to escalating and serious – if not life-threatening – complications. Another challenge on my short list is continuing to push the fight for both recognition and a living wage for “all” personal assistants, whether a family member or other. This discussion appears to be moving in the right direction, but the fight’s not over. Dedicated, educated and

compassionate day-to-day support for our members with the most severe challenges is integral to their long-term health – and by extension their capacity to remain or become the most productive citizens possible. While I have many more dreams regarding the direction and future of NSCIA and its members, another at the top of my list is representation by a recognized and active chapter of NSCIA in all 50 states. This is our charter in my opinion, and we’re heading deliberately toward that goal. So, how do we achieve these and other lofty goals? Through our passion, effort, drive, and membership growth? These are certainly key elements that will support our success. But the only way to maintain our mission and keep the promise to our members and many supporters moving forward is through development dollars. Clearly we must count on NSCIA board, committees, partners, staff and key constituents to drive

your gift. Outof-pocket expenses incurred on behalf of the NSCIA and in furtherance of its mission may also be deductible. To document these expenses, you should retain adequate records and receipts to verify any costs (like travel expenses, etc.) that you paid while volunteering for the national office, a local chapter or a support group. For those who seek the benefit of a 2009-dated tax deduction, but who may wish to delay payment, you may charge your contribution to a credit card by December 31st. That way, you will qualify for a 2009 deduction, but won’t have to pay the bill until 2010. Obviously, this suggestion will not be prudent if you do not pay the full balance when the credit card bill comes due, because the interest charges may cancel out any tax savings.

eficiaries. Tax laws and investment choices change over time, so it is always good to review and update your estate plan, even if the primary component is just a simple will. Persons wishing to add a bequest to a nonprofit organization such as the NSCIA need not re-write their entire will. Instead, in most jurisdictions, you can simply amend your will with a short writing called a codicil and thereby leave a charitable bequest. Monies held in a qualified retirement plan, such as an Individual Retirement Account (“IRA”) or a Section 401(k) plan, are generally taxable to the recipients once the plan participant dies. This rule does not apply, however, to non-profit charities like the NSCIA. As a result, those wishing to provide for charitable organizations in their estate plan may wish to consider donating monies from their IRA and 401(k) plans to their favorite charities and distributing other assets and securities to their spouse, children or other heirs. Under current IRS rollover laws, NSCIA supporters over the age of 70 and ½ years can direct an IRA distribution to the organization of up to $100,000 and exclude the entire amount from their taxable income.

Estate Planning and Bequests.

Estate planning is a longer term method of managing and preserving assets during your lifetime and of maximizing the contributions ultimately available to your ben-

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this support. But it can’t stop with us. We must implore you, our extended family and friends, to do whatever you can – even in these challenging times – to support our mission through your financial generosity. I’m not embarrassed to ask this since I have seen the impact our efforts make every day, and I have lived with SCI for my entire adult life. I know the valuable services and support that we provide for anyone living with or incurring SCI in our nation. And I know the passionate desire that we have to continue providing those services and supports. Please visit us on line (www.spinalcord. org), call us or one of our many fine chapters or support groups, or reach out to me directly to discuss how your support will help to assure that NSCIA can continue to lead the way in helping to maximize quality of life for anyone living with SCI/D in our nation.

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Charitable Trusts.

Trusts are but one vehicle for obtaining estate planning and tax advantages. Their levels of complexity and sophistication can vary sub-

stantially. Two types of trusts with special philanthropic features are charitable remainder trusts and charitable lead trusts. Typically, charitable remainder trusts are designed to provide income to the persons creating them and to their family members or beneficiaries until the trust period ends. At that point, a charitable organization such as the NSCIA receives what remains in the trust. The amounts of income received by the creators and their family members depend upon the terms of the trust. The amounts may either be fixed or calculated as a percentage of the value of the trust when established or the annual income generated by its assets. Charitable lead trusts are structured differently and offer different benefits. They typically distribute annual income to the charitable organization while the trust is open, thereby generating annual tax deductions for the trust. When the trust period ends, the assets are then distributed to the beneficiaries of the trust’s creator.

Conclusion.

Estate, investment and tax advice represent distinct specialties, and professionals in the fields of finance, accounting and law should be consulted before undertaking any significant planning. Doing so, however, may help you maximize both the monies that you keep and those that you give to those persons and causes most important to you.


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Vol. 6, No. 6

public policy

Broadband Accessibility for People with Disabilities: Barriers, Opportunities, and Policy Recommendations

or health issues make working from home more appealing. Those Americans living with paralysis who have broadband access use it for work as well as access to health care and also for educational purposes. To increase the access to broadband and its use by this population, the National Spinal Cord Injury Association and United Spinal Association make the following specific recommendations for inclusion in the FCC’s national broadband plan: •

Continuation and expansion of programs that encourage broadband investment and network build out in

By Peggy Hathaway In recent years, broadband technology has spurred innovation and new opportunities in virtually all aspects of life. Americans are able to see a doctor from the convenience of their own homes or learn about ways to improve health. Unfortunately, not all Americans are able to take advantage of these exciting changes. For too many in rural parts of the country, a broadband connection remains out of reach. For people with serious conditions such as spinal cord injuries or diseases and families the ability to share medical information with a physician or get up to date information regarding healthcare can mean avoiding serious complication and lengthy hospital stays. Following are excerpts of the formal statement for the record given at an FCC forum on broadband accessibility in Washington, D.C. on Oct 20, 2009 by Peggy Hathaway, vice president for public policy with Spinal Cord Advocates, a Public Policy Collaborative of United Spinal Association & National Spinal Cord Injury Association.

Barriers and opportunities for people with SCI/D and mobility disabilities

Good Morning. I am Peggy Hathaway. I represent both United Spinal Association and the National Spinal Cord Injury Association on federal public policy issues. Eric Larson and Mary Brooner of the National Spinal Cord Injury Association regret that they are unable to be here today. Both the National Spinal Cord Injury Association and United Spinal Association serve Americans living with paralysis resulting from spinal cord injuries or disorders – or SCI/D. While the causes and the specific levels of impairment vary, people with SCI/D generally have gross and fine motor skill limitations. It is important to understand that these physical limitations impact not only mobility – getting to work, to school and so forth, and then moving around in those environments, but can often also impact their ability to operate commonly used communications devices such as telephones, computers and keyboards – both the hardware itself and commonly used software. The degree and type of motor skill limitation vary widely with SCI/D – built in access works in some cases, while others require specialized assistive technologies such as voice activated controls, to have access to communications technologies. The population of people impacted in this way is significant. A recent population study conducted by The University of New Mexico, School of Medicine Health Sciences Center shows that • Approximately 6 million people in the United States are living with paralysis.

This is nearly 33% more than previous estimates showed. Household income for those who reported being paralyzed is heavily skewed towards lower income brackets, and is significantly lower than household income for the country as a whole as reported by the United States Census. While paralysis is fairly evenly distributed between males and females, paralysis due to spinal cord injury is greater among males and men are nearly twice as likely (1.77) to incur a spinal cord injury as females. Just over three-quarters of those who reported being paralyzed were White (77.8%). Nonetheless paralysis is disproportionately distributed among minority communities, including African Americans and Native Americans, when compared to ethnicity data from the United States Census. Among Hispanics, however, those who reported being paralyzed represented approximately the same percentage as those who reported being Hispanic in the United States Census.

Yet, people with spinal cord injuries and diseases are quite capable of contributing meaningfully to the United States economy and achieving economic independence. For people who have acquired spinal cord injuries or disorders, on-line education and skills training can often lead to new careers. Access to broadband Internet has made telecommuting attractive to employers and employees -- enabling increased employment opportunities for people for whom mobility

rural areas to provide the means for unserved users to connect. Cost is a major barrier to broadband access for many of our constituents. Programs subsidizing equipment and connection expenses, as well as necessary assistive technology, (similar to the USF) are critical to persons with SCI/D. For example, to someone living on an SSI payment of about $674 per month – as many people with disabilities do – the cost of a computer and adaptive software and equipment – not to mention the cost of subscribing to a service -- is prohibitive. On the other hand, if they have these things, they may be able to be employed, and they can use these tools to minimize social isolation and communicate with their service providers. Programs designed to educate prospective broadband Internet users should be implemented so they can more quickly realize the benefits. Programs should be designed to incorporate messaging and training about access for persons with disabilities, including those living with the results of SCI/D. In addition, communications should be encouraged that are targeted directly at the disability community. For example, the FCC may consider re-working its own website so that information about broadband and programs to support broadband are clearly called out for various disabilities so that it is easy for a consumer with SCI/D or some other disability to find the information that will most help him or her. The National Broadband Plan should

have incentives to develop or build Broadband equipment operable without touch or pressure from touch. Speech, eye movements, brain wave activity are ways many of the most severely impaired can use BB. Applied research needs funding. Above all, the FCC should advocate a path for continued private investment so these realities can be achieved

Accessibility and Affordability Barriers to Broadband and Internet Faces by People with Disabilities.

Employment is a huge priority for people with SCI/D because of the broad positive impact employment has, first on the emotional, mental and physical health of the individual but also on the community and economy. People with spinal cord injuries and diseases are quite capable of contributing meaningfully to the United States economy. If a person acquires SCI/D through an injury or illness as an adult, his or her skills and training are intact. What is needed are employment accommodations for the paralysis. Here, broadband along with appropriate software and assistive technologies are huge opportunities for returning to the work force. In addition, for people who have acquired spinal cord injuries or disease, on-line education and skills training can often lead to new careers. Unemployment rates are dramatically higher among SCI/D constituents than in the population as a whole. According to 2007 Disability Status Report published by Cornell University : • In 2007, the employment rate of working-age people with disabilities in the US was 36.9 percent. • In 2007, the employment rate of working-age people without disabilities in the US was 79.7 percent. • The gap between the employment rates of working-age people with and without disabilities was 42.8 per-centage points. • Employment of non-institutionalized working-age people (ages 21 to 64) with “Physical” disabilities was 31.3%. According to the University of Alabama Spinal Cord Injury Information Network , about 40% of persons with paraplegia and 30% of persons with tetraplegia (quadriplegia) eventually return to work. Access to broadband Internet has made telecommuting attractive to employers and employees enabling increased employment opportunities for people who mobility or health issues make work from home more appealing. In an April 2009 study sponsored by Beaumont Enterprise, the author found that increased broadband Internet access could lead to the creation of 273,000 new telecommuting jobs. Even beyond the benefits to employers, employees, and the economy, telecommuting will provide our members and others like them with the not only support their families but to contribute to the greater good of society. It is our belief that universal broadband Internet access combined with new assistive technologies will provide everyone with a spinal cord injury or disease an opportunity to work and earn a living. Continued on page 8


Vol. 6, No. 6

Aging Well with Spinal Cord Injury: Sleep Problems and Medications By Researchers at the University of Washington’s Aging Rehabilitation Research and Training Center

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n our last column, we discussed a number of factors, including medications, that can cause sleep problems. In this column, we will go into a little more depth about ways that medications can disrupt sleep patterns, and how to resolve these issues. As with any issues or questions you may have related to your medications, your doctor should be the first person you talk with. Pharmacists can also be excellent resources for information about medications. A class of sedative medications that are sometimes prescribed for sleep are called benzodiazepines, and includes Valium©, Xanax©, Klonopin©, Seresta©, and Restoril©. Although these drugs are often prescribed for insomnia, they can actually have a negative impact on sleep by inhibiting REM (rapid eye-movement) sleep, an important stage of the sleep cycle. REM is a psychologically restorative part of the sleep cycle, and contributes to healthy functioning of the brain. People may also become dependent on these medications and their bodies may build tolerance requiring larger doses and continuing the cycle of disturbed REM sleep. Other negative physical and psychological side effects are also associated with long term use of benzodiazepines for those who are aging with disability. For these reasons, benzodiazepines are usually not recommended as a long-term solution to chronic sleep problems. However, it is very important to understand that abruptly discontinuing benzodiazepines “cold turkey” can be very dangerous. If you are taking medications that fall into this category, talk to your doctor about how to slowly and safely adjust them for your long-term benefit. This may include tapering them until you no longer take them at all. There has been a lot of research over the years on how benzodiazepines affect sleep, some going all the way back to 1968. This research includes how the medications act in the body, what side effects they cause, and what kinds of interactions may affect people who take them. The most recent research has focused on how people should taper off benzodiazepines. Some evidence has shown that melatonin, a hormone that regulates sleep and wake cycles, may be negatively affected by the benzodiazepine drug class. Increasing melatonin levels may help people to taper off benzodiazepines safely. Talk to your doctor if you’re interested in learning more about melatonin and how it could possibly help tapering off benzodiazepines.

A very commonly prescribed sleep medication that is similar to the benzodiazepine class of medication is Ambien©. This medication (also called Zolpidem) binds to receptors at the same location as benzodiazepines. It’s effects are also similar to benzodiazepines, but it is chemically different. Like benzodiazepines, this medication is not recommended as a long term solution for sleep problems. Long term use can lead to tolerance, dependence, and withdrawal, and tapering to reduce or stop the medication is necessary. Some research also shows that aging people are more sensitive to the effects of the drug. Another commonly prescribed medication, Lunesta© (or Eszopiclone), also acts like the benzodiazepines. It can be helpful for short term relief from sleep problems but can lead to dependence and withdrawal over the long term. Like all the other medications we’re discussing, it’s important to talk to your doctor before you start or stop Ambien© or Lunesta©. A class of drugs called “antidepressants” (Trazodone©, Amitriptyline©, Paxil© and Zoloft©) can have a positive impact on sleep. These medications help to restore a healthy sleep cycle, including both REM sleep and deep sleep, even when taken at doses lower than those normally given to treat depression. As mentioned before, REM sleep is restorative psychologically. Deep sleep (also known as “stage 3” and “stage 4” sleep) is a stage of sleep that is different than REM sleep. Deep sleep is restorative physically. According to research, this is the part of the sleep cycle that antidepressants impact. Although these medications may shorten REM time, research suggests the positive effects of these medications on deep sleep outweigh the reduced REM sleep for people with sleep problems. These types of medications may also help with sleep disorders such as sleep terrors. Talk to your doctor if you’re interested in the possibility of taking this class of medications for sleep even if you do not have depression. It is important to note, however, that some disorders (such as restless legs syndrome and REM sleep behavior disorder) may be negatively affected by antidepressants. Some people use another class of medications to help with sleep: allergy medications or anti-histamines. These work to cause drowsiness because they counteract histamines in the central nervous system. Some people find that these medications can help with sleep on occasion, but they are not recommended to be used as regular sleep medications. And even if used occasionally, all over the counter medications should be taken strictly according to the package guidelines. If you’re having sleep problems and have been thinking about taking allergy medicines to help, it would be a very good idea to talk with your doctor about your sleep problems and the benefits and costs of using these medications (or any other medication) to help. Your doctor will be able to give your more information on how to address sleep problems, and can advise on over the counter medications that may help and that won’t interact with anything you’re currently taking. Antihistamines, for example, may not be safe if you have glaucoma, heart problems, or enlarged prostate.

There’s a lot of advice out there about how to get better sleep, and there are a number of medications that may help you do just that. It is important to remember to be careful about what medication to take for sleep, and to know the costs and benefits of each type of medication. We cannot emphasize enough that, for your health and safety, it is of utmost importance to always talk with your doctor if you’re think-

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ing about starting, stopping, or changing and medications. The contents of this column were developed under a grant from the Department of Education, NIDRR grant number H133B080024. However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the federal government.

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

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


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Vol. 6, No. 6

Broadband Accessibility.. Continued from page 6

Let me describe a real life example of how access to broadband – with individualized adaptive technology and software can enable someone with severe SCI to be employed and participate in the community. Tom Cooke, a member of the United Spinal Association Board, had a severe SCI at age 19 in 1990. His injury is quite high in the spine – he cannot use his hands, though he can nod his head. After a year in the hospital, he went on to earn both a bachelor’s and a master’s degree. Tom lives in Queens in New York City and has access to high speed internet. Speech recognition/voice activated internet access has made all the difference to him. Tom uses head action to use a mouse. By contrast, when he was in college, he used a mouth stick to type 15 page papers which is very time-consuming. He uses the computer for emails, phone calls, reading the news, watching speeches, etc. These tools enable him to work – and to participate in the community. He ran his own campaign for New York City Council (which he lost) and was employed as the campaign director for another New York City Council candidate.

Choosing a Power Wheelchair... Continued from page 1

Care, Inc. (achc.org); American Board for Certification in Orthotics & Prosthetics, Inc. (abcop.org); Board of Certification/Accreditation International (bocinternational. org); National Association of Boards of Pharmacy (nabp.net); The National Board of Accreditation for Orthotic Suppliers (nbaos.org). Does the provider employ credentialed rehab technology specialists? A trained, experienced, and credentialed specialist should be available and involved. This individual will be a critical partner in the assessment and delivery process. He or she should have recognized credentials in this area such as Assistive Technology Professional (ATP) or Certified Rehab Technology Specialist (CRTS). These credentials are issued by two different organizations, RESNA (resna.org) and NRRTS (nrrts.org), respectively. This specialist should have a wide breadth of knowledge and experience in the areas of mobility and positioning. The person should be well versed in the variety of available technology and actively participate in the assessment and recommendation process. An experienced and credentialed rehab technology specialist is your best source for matching your needs to the right products. Does the provider perform a proper evaluation and offer a variety of products from different manufacturers? There is no “one model fits all” wheelchair. A proper assessment includes identifying your needs and then identifying wheelchair models and accessories that best match these needs. In many cases the provider may be working with your physical or occupational thera-

He has also had paid employment tutoring high school students for standardized tests. Tom’s employment and substantial civic engagement are both enabled by his access to broadband and software and equipment that meet his individual needs. Because Tom’s injury was while he was in the military, as a veteran with a service connected injury, he is entitled to VA benefits. He can afford to get a new computer every couple of years and it’s manageable to pay $100 for new software. This enables him to get new technology as it comes out. It is not just the accessibility of the internet but the ability to afford appropriate equipment and to be trained in using it that is essential. Even if broadband is available in public libraries, if it doesn’t have the right software and equipment to enable a particular person with disabilities to use it, it doesn’t do that person any good. Tom has a van in which he can ride as a passenger but it is often better to take public transportation in NYC. With telecommuting, he can do a great deal of work at home. Tom is confident that in most jobs he can be productive with his level of disability – because of access to broad band and appropriate computers, software and equipment. Tom hopes that broadband will be available throughout the country – and that adaptive computers, software and other pist. The provider needs to consider and understand your goals and objectives in order to recommend appropriate options and alternatives. A provider should have access to a variety of manufacturers to offer the best available options. He or she should also be able to clearly explain and demonstrate the differences among products and present each of them in light of their specific advantages and disadvantages. Does the provider actively assist with funding arrangements? Powered mobility is not inexpensive. The provider should actively assist in identifying and pursuing all funding options. The provider’s staff should have the experience and persistence to pursue available funding aggressively and successfully. Coordinating documentation requirements, obtaining appropriate prior approvals, and submitting the claim to the respective payer(s) is critical. The provider should take responsibility to make sure that the claim is handled as efficiently as possible from submission through payment. Funding can be a very involved and complicated process and an experienced company can minimize your out-of-pocket expense. Does the provider employ qualified technicians to assemble, deliver, and adjust the equipment? Given the complexity of the technologies available today, qualified supporting service technicians should be available to assist as needed. These individuals should receive ongoing training from the manufacturers and be familiar with the assembly and adjustment of the wheelchair, its drive control system, and related accessories. Much of today’s technology is complex and you don’t want an untrained person handling assembly and adjustments. Ask for details on the type and depth of the technician’s training. Does the provider have the capabilities to provide timely “after-the-sale” service? This is a critical area to investigate

technology will be available to everyone who needs it – with subsidies for people who cannot afford these things. These will make a huge difference in people’s personal lives, lives and can help them be employed – and be taxpayers. It’s a win-win for the individual and for American productivity. Thank you for this opportunity to participate in these panels on behalf of both the National Spinal Cord Injury Association and United Spinal Association. We look forward to continued participation and partnering with the FCC. Peggy (Margaret V.) Hathaway is vice president for public policy with Spinal Cord Advocates, a public policy collaborative of United Spinal Association & National Spinal Cord Injury Association. Previously she served as a Joseph P. Kennedy Jr. Foundation Fellow on Senator Baucus’ Senate Finance Committee staff. Ms. Hathaway has served as an attorney with the Office of Civil Rights at the U.S. Dept. of State, as Counsel with Thacher Proffitt & Wood, as Director of Commercial Real Estate Finance at the Mortgage Bankers Association, and as staff to the California Senate Local Government Committee. She holds a B.A. from the University of California at Davis and a J.D. from the University of California at Berkeley and is a member of the California, D.C. and U.S. Supreme Court Bars.

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

The control system on this wheelchair allows operation based on the “sips” and “puffs” of the user. It also allows the seating system to be tilted back for pressure relief and has a secondary control system at the rear for attendant operation.

at the front-end. Unfortunately it is often overlooked and becomes a major problem when a wheelchair needs service or repair down the road. What are the capabilities to handle maintenance and repair after the sale? A qualified provider should have an on-site repair facility, trained and experience service technicians, and an adequate inventory of repair parts. Providers who have made the investment in this area clearly show their long-term commitment to the needs of their customers. These are some of the questions to ask to

identify qualified providers and avoid dealing with the bad apples. Finding a qualified power wheelchair provider is critical to getting the best outcome when it comes to power mobility. The right choice will bring real benefits at the time of purchase and well into your future. Don Clayback is Executive Director of the National Coalition for Assistive and Rehab Technology (NCART) and can be reached at dclayback@ncart.us or 716-839-9728. Also visit the group’s website at www.ncart.us


Vol. 6, No. 6

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Vol. 6, No. 6

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Vol. 6, No. 6

Maher Honored... Continued from page 1

technology start-up, and both the durable medical equipment and assistive technology industries. Of note, he joined Sigmedics, Inc., a 1988 venture capital supported rehabilitation technology firm, as Director of Sales Support and remained with the organization as they launched the development, marketing, and implementation of the Parastep-I速 System to the rehabilitation community. The Parastep-I received FDA Pre-Market Application (PMA) approval in 1994 and continues to be used in many model spinal centers in the United States and Europe as a therapeutic gait development tool. As the Director of SPR/nAblement, www.sprinc.com, he manages business development for this IT consulting firm related to the support and placement of professionals with disabilities into the information technology field. SPR is headquartered in Chicago with additional offices in Milwaukee and Indianapolis. Currently serving as the President of the Board of Directors with The National Spinal Cord Injury Association (NSCIA), he also serves on the Steering and Education Committees for Abilitylinks, www. abilitylinks.org, as well as on the Consumer Advisory Board (CAB) for Air Travelers with Disabilities for Northwest Airlines. He has also served on the Illinois chap-

ter of the Spinal Cord Injury Association board. In 1994, he co-founded Moving Mountains, a unique outdoor-based growth and adventure program for individuals with spinal cord injury or other disabilities and the healthcare professionals who work with them.

Rehabilitation Institute of Chicago Business TEAM

Established in 1973, the RIC Business TEAM consists of over 100 of the most influential Chicago area Businesses, people with a disability and the vocational staff of the Rehabilitation Institute of Chicago. The mission of the TEAM Committee is to facilitate the hiring of people with a disability. Its purpose is to engage the active participation of the business community to enable qualified individuals with a disability to obtain employment and succeed in the workforce. It provides education to employers on the benefits of employing and accommodating people with a disability. To achieve the goals of its mission, the committee works through four subgroups: Training Subcommittee, Employment Subcommittee, Advisory Board, and Membership Subcommittee. Information is disseminated through TEAM quarterly meetings, an annual corporate award program, and a semi-annual newsletter. The newsletter is distributed to 150 Illinois companies and individuals. In addition, the TEAM sends out a monthly Career Candidates list and holds a Career Day each year.


Vol. 6, No. 6

Caregiving

Giving Back to Our Loved Ones By Marc Kiven

O

n an intellectual level I had always been able to empathize with people going through life and death dramas with their family members, especially since my mother died suddenly when I was just 16 years old. But it was when my father began to develop Alzheimer’s disease that I began to truly feel the pain of others who had been thrust into the role of caregiver on a very visceral level. My father, up until the onset of dementia, was the highly energetic and charismatic entrepreneurial leader of the family. When it quickly struck me that I would be in charge of the rest of his life, it changed not just how I saw him, but the entire framework of what I knew to be my family. I would now reverse roles with him at a time when I also had extremely demanding family, business and community responsibilities. Through discussions and research, I quickly learned of the challenges faced by millions of Americans in a similar situation of providing care to family members. I was at first daunted by the task of being responsible for taking care of my father, after

all caring for a loved one is not scripted or learned in school. But, before long, I began to see how this challenge of raising my children and developing my businesses (I like my father am a serial entrepreneur), would fit with caring for my father, and become a transformative opportunity for all of us. I actually started to think that somehow this was something that my father had prepared me for all my life. Taking care of my father meant being a real human being. What would be more important than stepping up for one’s own parent? I in a strange way I felt empowered and mission-driven like never before. It even drove me to create a website that would help other caregivers cope with and manage the care of a loved one. (I really am my father’s son; everything is an opportunity to create something new!) My father’s health situation has ultimately required round the clock care both to keep him safe, since Alzheimer’s victims in many cases no longer have the judgment to know what is hazardous and what is not, and to keep his mind as stimulated as possible. For my father the goal was to keep him out of an assisted living facility for as long as possible. Recent studies indicate that the progression of the disease can be slowed if the patient is engaged in stimulating activity on a frequent basis. Though his very skilled and sensitive caregiver provides a great deal of support and stimulation, nobody can completely replace family. It is amazing to watch my dad interact with my children and me when we are all together. It is easy to really get a sense that he is somehow tuned into that fact that he

is surrounded with those who love him. He seems to be more calm and attentive during family visits than usual and he always tries, in his own special way, to tell a story about the fleeting bit of his past that he has the ability to remember. My father, luckily, is in the fortunate position to be able to afford a full time caregiver, which has provided him with the privilege of remaining in his own home. We credit this level of care and engagement with slowing the pace of his degeneration. Prior to fulltime assistance it was typical to see my father’s state decline in easily marked 2 – 3 month stages. Now, with someone by his side for the last two years, it has been clearly evident that the progression of the disease has slowed to declining in 6-month stages. What is most interesting, and at the same time concerning, about this is that too many families and their loved ones, do not have these options, and the personal and financial expenditure can be quite challenging – or even impossible. While my case involved Alzheimer’s, the experience is shared with those families dealing with spinal cord injuries and diseases. The care we provide in all cases introduces the potential for physical and emotional stress, fatigue, and burnout. In addition, many also face financial challenges. Being placed in this role severely compromises the caregiver’s ability to maintain steady, stable employment and income let alone the impact of the non-reimbursable out of pocket hours and expenses that mount and accelerate over time. In total it is estimated that caregivers contributed to 8.5 billion unpaid hours at an estimated value of $94 bill a year

{} Resources

CareRunner.com provides a wide range of tools that enable caregivers to share information, manage health and prescription records, coordinate care, communicate privately and securely, and learn more about health conditions and caregiving strategies. The service is free and can be accessed at carerunner.com National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers’ lives by removing barriers to health and well being. Visit thefamilycaregiver.org

Spinal Cord Central can help you learn how to prepare yourself for a new caregiving role and find specific information related to caregiving as it related to SCI/D. Call or email Spinal Cord Central’s information specialist with your questions. Visit spinalcordcentral.org

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(yes, those are billions!) I have an extremely busy schedule, and, like many working parents, I can’t miss a beat. If, as a family, we were not in a position to have a caregiver for my father, there is no doubt that matters would be considerably different. So many Americans are in this “Catch 22” situation and everyone suffers mightily. We have recently received a number of stories sent into our website describing just how devastating this kind of situation can be for caregivers and their families. Their stories are compelling and palpable, and their strain is evident in their choice of words. It is clear that many of them feel guilty that they can’t provide the level of care that their loved ones deserve, even when, in essence, they’ve given up their lives to provide that care. At the same time we hear about empowerment, and how caregiving has tapped into the humanity of the caregiver in ways they could not have imagined. My own experience has confirmed that this can have transformative power. I know that my time with my father is limited and that it is, and will be progressively more, compromised by his declining condition. Nevertheless, this experience has taught me a lot about myself, and I’m proud that I have been able to step up and be the best son possible. Anyone who has helped out at a soup kitchen or given a homeless person warm clothes or a ride to a shelter knows what I mean. You just feel that somehow you’ve become a better and fuller person. You zero in on what matters and dispense with the inconsequential. You focus. Not incidentally, I’m also proud that my children have been witness to this experience as well and frankly I think that anything that I can do to make them proud of me is good for them and it helps to build a sense of priority and purpose for them. As for my father, I’m not sure that he can process much at this point, but I am quite sure that he feels and senses the care and love we give. It’s the least I could do for the loving father who raised me with such care and purpose.

Out of Necessity: The Creation of CareRunner.com

Over the years, I struggled to communicate efficiently with all of the people who were interested in my father’s condition, and clumsily managed his care with disparate and disconnected organizational resources. Slightly over a year ago as it occurred to me that I could create an internet site about caregiving that would have the potential to help some of the 40 million caregivers across the country who struggle with similar frustrations and challenges. That vision has become a reality, and the recently launched CareRunner.com has been designed to provide non-professional caregivers with the online tools, information and support to more easily manage the care of loved ones, and all in a single site. The site, which was recently launched, provides a wide range of tools that enable caregivers to share information, manage health and prescription records, coordinate care, communicate privately and securely, and learn more about health conditions and caregiving strategies. The service is free and can be accessed at www.carerunner.com.


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Vol. 6, No. 6

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www.newmobility.com 888-850-0344, ext. 209


Vol. 6, No. 6

he latest technology and vehicle modifications are enabling people with disabilities the kind of mobility in society that was once only a dream. It is this mobility that provides freedom and independence like never before. In part, what has made the world more accessible and convenient is the advance-

individuals that lack the strength or range of motion to utilize manual hand controls. These controls are modular and can range from steering to acceleration and braking. The EMC system can be modified to any existing vehicle and will enable a person to drive that vehicle with only two hands or just one. “That is probably the most exciting product advancement in the industry because it provides true independence to those with spinal cord injuries, Spina Bifida, Muscular Dystrophy and many of the disabled military veterans we have returning,” said Kinstler. “People can now really get back into life regardless of what life has thrown at them.” Another great advancement is the Turning Automotive Seat (TAS) from Bruno, which is a great product for anyone who lacks the strength to get themselves up into a vehicle. This system provides easy access to an automotive seat by having the seat rotate, come out of the vehicle, and down toward the ground where the person can easily transfer.

in our industry is inventory. We have a lot full of brand new, modified vans as well as a large selection of used, modified vehicles,” said May. “People can come here and leave the same day with a vehicle they want, that is perfectly suited to their needs and within their budget. It used to be that people would bring in full-sized vans to be modified and that would take six to eight weeks,” he said. As you can imagine, some of the new converted vans can be expensive. However, a full range of new and used vehicles with different models, colors and prices are available now. This wasn’t the case even five years ago, when people had to wait weeks for delivery of their vehicle and even start making payments on a van they didn’t have yet. Also, the advancements like lifts, automatic seats and digital/electronic controls usually can be partially or fully funded by outside sources. To help tackle the expense, United Access works with their customers to help find funding sources through federal, state and Veterans Administration sources. They also help arrange vehicle financing, through

ment of wheelchair accessible vehicles, driving systems, mobility seats, scooter lifts, and other vehicle modifications. “I think the new, lowered-floor minivan has evolved to be the best, all-around advancement in this field because it accommodates most anyone in a wheelchair or scooter and provides unparalleled flexibility,” said Stephen Kinstler, a Mobility Specialist with United Access of St. Louis, who sell, install and service all types of advanced mobility technology. Kinstler has been with United Access for five years. He got his first modified vehicle after he lost the use of his legs from a rare viral disease. Now he passionately educates people on the products and services that enable him to drive to work and raise a family. “Vehicle mobility used to be primarily the full-size vans with the bulky platform lifts,” said Kinstler from the inside of a sparkling, minivan-filled showroom. “The lowered floor minivans that we offer from manufacturers like VMI, Braun, Viewpoint and Eldorado provide greater access to facilities, more comfort and better gas mileage, while also enabling the person in the wheelchair to sit up front and drive, which is what I do in mine,” Kinstler said. Technology is making a big impact in this industry with advancements like the digital and electronic driving controls from EMC. These controls are used for those

One of the most advanced mobility options is the Advanced Transport and Retrieval System (ATRS) from Freedom Sciences LLC. This system integrates cutting-edge robotics technology with a laser guidance system that will deploy and position a power chair next to a lowered vehicle passenger enabling self transfer. The ATRS makes it possible for a limited mobility individual to safely transport their mobility aid into and out of a vehicle of their choice without the assistance of a caregiver. “The independence enabled by the TAS and ATRS is really impressive,” said Alan Brown, another Mobility Specialist at United Access who has been with the company for 18 years. “When I started with the company, all I saw were big, slow lifts in full-size vans,” said Brown. “Now, the products and technology available are amazing and enable anyone with a disability to do just about anything. It’s been impressive to see our business grow and improve the way it has,” he said. Almost like a microcosm of the vehicle mobility industry, United Access has grown from one small store in St. Louis in 1997 to seven branches including Kansas City, Columbia, Mo., Springfield, Mo., Memphis, Tenn., Springfield, IL., and Champaign, IL., with plans to add two more branches next year. “I think one of the best advancements

their banking partners, to fit different budgets. In some cases, extended term financing of up to 10 years is available. The mobility available now to those who use wheelchairs, power chairs or scooters is amazing, while the products, quality and service have improved dramatically, just in the last 10 years. From large inventories to choose from, to the dozens of mobility options to fit specific needs, to help with funding and extended financing, there is a lot to be excited about in the vehicle mobility industry. “I’ve been in this industry since the beginning and the new products and technology are great,” said May. “But what I love about this business is reaching out and helping people gain freedom, independence and mobility in life.”

travel

The Latest and Greatest in Disabled Mobility By Chris Usselman

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United Access, one of the largest mobility dealers in the nation, is a full line dealer as well as an exclusive supplier of some technologies, which enable them to offer multiple vehicle solutions for any specific need. Founded in 1971, United Access began its journey in the medical equipment business. Its product line evolved to include van modifications and since 1997 United Access has been solely focused on distributing and servicing wheelchair accessible vehicles, driving systems, mobility seats, scooter lifts, and other vehicle modifications. (www. unitedaccess.com)

15

Voting on NSCIA Hall of Fame Open Through End of January

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nline voting for the 2009 Spinal Cord Injury (SCI) Hall of Fame Inductees is now open at www.spinalcord.org and will run through the end of January, 2010. Candidates were nominated in 2009 in 17 available categories. Voting is open only to NSCIA members, but individual membership in NSICA is free and it is easy to join online. Finalists will be reviewed by a Hall of Fame Selection Committee before inductees are announced. Formed by NSCIA in 2005, the SCI Hall of Fame was created to celebrate and honor individuals and organizations that have made significant contributions to quality of life and advancements toward a better future for all individuals with spinal cord injury and disorders. Categories currently include Assistive Technology, Benefactor, Corporate Executive, Disability Activist, Disability Educator, Entertainment, Entrepreneur, Government Executive, Grassroots Organizer, Legislative, Media, Research in Basic Science, Research in Quality of Life, Sports, Military, International and Direct Provider. Detailed descriptions of the categories, a full list of SCI Hall of Fame members and more about the SCI Hall of Fame are available online. In addition to the SCI Hall of Fame categories, nominations will be accepted for the 2009 NSCIA Emerging Leader Award for exceptional leadership qualities in a local or regional capacity toward the improvement of opportunities or quality of life for persons living with SCI. NSCIA hosted the 4th annual SCI Hall of Fame Induction Ceremony and Gala last fall in New Orleans to recognize the anniversary of Hurricane Katrina. In conjunction with the celebration, NSCIA hosted Building a Culture of Preparedness...Including Everyone, a town hall meeting on disaster preparedness, which featured a keynote address by Lt. Gen. Russel Honore (U.S. Army Ret.). The mission of The National Spinal Cord Injury Association (NSCIA) is to enable people with spinal cord injury and disease (SCI/D) to achieve their highest level of independence, health, and quality of life. NSCIA actively advocates for best practices and public policies that proactively affect people with SCI/D, their families and service providers. The association conducts public policy initiatives through its local chapters and at the national level and actively collaborates with other national organizations on issues of mutual concern. For more information about the SCI Hall of Fame, visit spinalcord.org or contact NSCIA at info@spinalcord.org or 1-800-962-9629.


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Vol. 6, No. 6

community outreach

Observations on Self-Advocacy By Patrick Maher

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mong the recent developments in healthcare are shorter inpatient hospital stays, limited personal resources, and increasing health care costs. “There is a need for

long term psychosocial treatment, rehabilitation and support that addresses quality of life, functional skills and accessing environmental supports.” So, what becomes of the individual after they have completed their approved course in the medical system and rehabilitation has ended according to their insurance benefits? Specifically, what happens to the individual after a life changing medical event occurs; or to the individual who has ongoing multiple medical or chronic conditions that require extended care? Does the existing medical system or current array of rehabilitation services assist individuals with reentering their community? There are a number of factors that contribute to successful community integration and many that impede this transition. This paper will highlight a few of these barriers including the lack of an individualized rehabilitation system, the initial hospitalization process, and the current medical model of care. After nearly 30 years of living with a spinal cord injury, I am moderately confident that I can speak to some core truths, or at least my experiences, related to advocating

for appropriate equipment and supplies to support a healthy and active life. Self-advocacy is unique for each of us living with mobility challenges and DME needs, but I do believe there are consistent principles that we can all follow to help assure our needs are met. As I write this, I’m speaking to the consumer, but as a provider, therapist or other healthcare professional, you can read this from your client’s point of view and help share with them how effective self advocacy can help them live healthier, more independent lives. First, you need to understand your coverage specific to medical equipment. Review your policy and make a call to the support services number. Before calling, know what you want to ask – write questions down and have them in front of you – such as

what documentation will you need to support the provision of everything from your evaluation, fittings, equipment provision and follow-up to make sure you’re not surprised with expensive bills on the back end of the process. Be cordial, but always get the first and last name of the representative with whom you’ve spoken– even when they might not care to share it. Keep a log of all communications including date and time, what was discussed and what you were told. If you’re challenged to write, be creative… tape record notes immediately following the call, have a friend or significant other take notes, dates, names, etc. I have ample personal experience in “fighting” some very expensive bills related to equipment and procedures, and such documentation has been critical to successfully defending my position in many cases. If you do find yourself in a challenge over equipment provision, payments, or related – know and follow the appeal processes of your provider. Don’t relent simply because it’s frustrating or the process doesn’t seem to be a straight line. It is often any-

thing but a simple and direct process to secure complex rehab equipment and have it supported. Another great asset can be one or more members of your critical care team – your physiatrist, physical therapist and certified rehab technician. Keep them apprised of progress and enlist their support fairly. People with coverage from more than one insurer (ex; Medicare and Blue Cross), need to know which policy is primary and which is secondary – or for that matter even a third carrier in some cases. They can go to www.medicare.gov/Coverage/Home.asp, and critically review this information if they are covered by Medicare or might have dual Medicaid coverage. There are strong FAQ links for both as well as toll-free numbers for any eligibility inquiries. There is nearly always an on line resource for private coverage as well. If not, make sure that you have the most current hard copy of the coverage/ policy manual and review the key sections on medical equipment or DME coverage. Finally, consumers should not assume that self-advocacy begins and ends with questions of insurance coverage and support. Advocating is a life-long pursuit which includes gaining knowledge, networking with others and exploring available resources – and there are many. Most will find peer support groups right in their own community. If not, they can consider forming their own support group. And I strongly encourage all individuals to seek out and engage appropriate, respected consumer organizations such as ours, National Spinal Cord Injury Association (NSCIA) (www.spinalcord.org), and others including United Spinal Association, Paralyzed Veterans of America (PVA), National Multiple Sclerosis Society, United

Cerebral Palsy Association, Muscular Dystrophy Association (MDA) or The ALS Association. These groups can be tremendous assets in holding fast to your rights – assuring that you are well-informed of those rights, and perhaps most importantly taking responsibility for your own health and well-being. Years ago I read an abstract from a clinical study related to levels of SCI and the incidence of skin ulcers. What I remember most clearly was that the incidence of serious skin breakdown was more prevalent in those with greater independence or lower injuries where the subject had more personal control to observe and monitor their tissue health. My experience has been that with knowledge, confidence in that knowledge and a healthy insistence on controlling our own well-being, all of us who depend on complex or even less complex DME for our mobility are well-prepared to advocate for ourselves or others for a lifetime. In addition to serving as president of the board of directors for NSCIA, Mr. Maher is a sales and marketing executive who has also served the disability community extensively since the onset of his spinal cord injury in 1981. He was injured while studying at the University of Illinois at Urbana-Champaign and returned to complete his B.S. from the College of Commerce and Business Administration following his rehabilitation at the Rehabilitation Institute of Chicago. Mr. Maher has represented a wide breadth of organizations during his professional career as a sales executive, including a Fortune 500 healthcare organization, a rehabilitation technology start-up, and both the durable medical equipment and assistive technology industries.


6

September/October 2007

Vol. 6, No. 6

in motion SPINAL CORD INJURY ASSOCIATION THE NATIONAL

Crazy 8’s Wheelchair Rugby Tournament This Weekend

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

Become a Member Today.

It’s Free!

JOIN OUR GROWING NATIONAL FORCE FOR CHANGE

Name

Rugby Rams and St. Louis Street Wheelchair City, State, Zip Athletic Association Host 3rd if available) E-mail (very important, Annual Tourney Please check membership type: he St. Louis Rugby Rams wheelchair ■ Individual with SCI/D rugby team and the St. Louis Wheelchair ■ Family member of friend Athletic Association (SLWAA) recently ■ Individual service or health care provider hosted the 3rd Annual Crazy 8’s Wheel■ Organizational chair Rugby Tournament, December 5-6, at Southwestern Illinois College-Belleville. Quad Rugby is a fast-paced, full wheelchair contact, four-on-four sport played by ■ Check Enclosed athletes with various The tour■ Credit Card (Visa,disabilities. Mastercard, Amer. Exp.) nament, sponsored by United Access of St. Louis (www.unitedaccess.com), is comprised Name on card of Credit three Card teams; # the St. Louis Rams, Texas Stampede the Frazier TNT. Expirationand Date This year, two of the St. Louis Rugby My donation is $ Rams, Kerri Morgan and Clayton Braun, became the first Rams to Services qualify for the NSCIA Member SCILife, HDI Publishers, Box 131401, U.S. National Rugby Team.PO They recently Houston, TX 77219-1401 traveled to Buenos Aires, Argentina for the Phone (713) 526-6900 Americas Zone Championships where they

T

Phone

FREE! FREE! FREE! Contact Us

I am interested in supporting NSCIA with:

■ Gifts of stocks or mutual funds faced Brazil, and Canada. The ■ GiftsArgentina of real estate U.S. team won the tournament in the final ■ Including NSCIA in my will game against Canada, 76-23. “I love this sport because it’s a chance to be active,” said David a Rental CoToll free (800)Miles, 962-9629 Fax (713)Access 526-7787 ordinator at United and new meme-mail: membership@spinalcord.org ber of theweb Rugby Rams. “Everyone looks site: www.spinalcord.org at people in wheelchairscutlike are fragile. out &we return

17

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

N

SCIA will celebrate 14 new inductees and an emerging leader at the 3rd annual Spinal Cord Injury (SCI) Hall of Fame gala and induction ceremony on the evening of Tuesday, Nov. 6, at the John F. Kennedy Center for the Performing Arts in Washington, D.C. in recognition of the accomplishments of people with SCI and those committed to their quality of life. Once again, NSCIA will be host to a performance on the Millennium Stage, followed by the 2007 induction ceremony and a dessert reception in the Roof Terrace Restaurant. Nashville based singer/songwriter JP Williams will perform on the Millennium Stage, and award-winning journalist, Leon Harris will emcee the event. Hosted last year by inaugural SCI Hall of Fame member and former Dateline NBC correspondent John Hockenberry, this black tie optional celebration is attended by business professionals, government officials from a variety of departments including the U.S. Departments of Health This proves that we aren’t fragile – weEducan and Human Services, Labor, Justice, do just about anything. That’sDevelopment a big thing to cation, Housing and Urban me,” and he thesaid. Social Security and Veterans AdQuad Rugby, or wheelchair rugby,media is one ministrations, healthcare providers, of the most popular wheelchair sports inand the representatives, researchers, individuals, world, crowds the Paralymfamiliesboasting – all of large whom share at a commitment pics Games, Veterans Wheelchair to maximizing the quality of life for Games people and It was develwithWorld spinalCup cordcompetitions. injury and disease.

oped in Canada in the late 1970s and was originally called “Murderball.” The game was introduced to the United States in the 1980s and the name was changed to Quad Rugby in order to give the sport greater name recognition and identity. “The year’s game categories is very physically intense,” This include Assistive said Miles. “My first practice I had stop Technology, Benefactor, Corporate to Execubecause I was exhausted. Now, my teamtive, Disability Activist, Disability Educator, mates push me toEntrepreneur, get better. My endurance Entertainment, Government and strengthGrassroots has improved a lot, which helps Executive, Organizer, Legislative, me in theResearch game but life,” he Research said. Media, in also BasicinScience, Wheelchair sports quadInrugby play in Quality of Life, andlike Sports. addition, an important role in the rehabilitation proNSCIA will award an “Emerging Leader,” a cess of award the person a physical last disabilspecial whichwith was introduced year ity. It provides the opportunity to improve in conjunction with the 2006 SCI Hall of physical, Fame. emotional, and social well-being through monthly The weekly processpractices, began in Augusttournawhen ments, and setting goals for success. NSCIA called for nominations. Far exceedMiles’ position as a rental coordinator ing last year’s nominations by almost 50 with United Access (www.unitedaccess.com) stellar nominees, NSCIA has received more of St. Louis keeps him in a position to help than 165 qualified nominees! These nomithose with disabilities. United Access has nees were the voted on by members sponsored Crazy 8’s NSCIA tournament since and reviewed by a selection committee to it began and is an industry-leading provider ratify the voting. One nominee from each of wheelchair accessible vehicles, driving categorymobility will be inducted andother celebrated at systems, seats, and adaptive the gala. vehicle modifications. technology Formed in 2005, theTourSCI The Crazyby8’sNSCIA Wheelchair Rugby Hall of Fame was created to celebrate nament began in 2007 in memory and and celhonor individuals organizations ebration of the life and of teammate Jasonthat De have made significant qualSalvo who passed awaycontributions in October ofto2006. ity of was life and advancements better Jason an active membertoward of the aRugby futurewho for all individuals with inRams truly embraced thespinal spiritcord of rugjuryand andproudly disease.wore the #8. by, To find out more about the SCI Hall of Fame or to see a list of previous inductees or thismoreyear’s nominees, visit8’s Wheelwww. For information on the Crazy chair Rugby Tournament, go to stlquadrugby.com. spinalcord.org.

Who’s Who in American Law 1985 through present

Attorney Ronald R. Gilbert

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

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

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

°

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

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

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

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

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

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O

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18

Vol. 6, No. 6

NSCIA Chapter & Support Group network ARIZONA Support Groups East Valley Support Group (COMPASS) Phone: (602) 241-1006 Contact: Pauline Staples E-mail: plstaples@msn.com Flagstaff Support Group Phone: (928) 527-8567 Contact: Al White Grupo de apoyo en Español Gentiva Rehab Without Walls, 7227 N 16th St #107, Phoenix, Arizona Phone: (602) 943-1012 Contact: Diane Prescott Support Group Phone: (623) 209-0311 Contact: Gary Hershey SCI Women Support Group Banner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307 Contact: Jill Greenlee, CTRS CALIFORNIA CHAPTER WYNGS, NSCIA 7900 Nelson Rd., Panorama City, California, 91402 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano Website: www.wyngs.org E-mail: wyngs4sci@msn.com Support Groups Southern California SCI Support Group Casa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, California, 91769 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano, WYNGS Email: wyngs4sci@msn.com Leon S. Peter’s Rehabilitation Center P.O. Box 1232, Fresno, California, 93715 Phone: (559) 459-6000 Ext. 5783 Contact: Ray Greenberg E-mail: rgreenberg@communitymedical.org CONNECTICUT CHAPTER Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, Connecticut, 06492 Phone: (203) 284-1045 Contact: Jeff Dion Website: www.sciact.org E-mail: nscia@sciact.org DISTRICT OF COLUMBIA CHAPTER SCI Network of Metropolitan Washington, NSCIA Attn: SCIN, 14 Wolf Drive, Silver Spring, Maryland, 20904 Phone: (240) 429-6141 Contact: Kimball Gray E-mail: kimballg@ecnv.org FLORIDA Support Groups Peer Support Contact 313 Spider Lily Ln, Naples, Florida, 34119 Phone: (239) 353-5894 Contact: Mindy Idaspe E-mail: scidconsultant@hotmail.com Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, Florida, 32901 Phone: (321) 984-4600 Contact: Ellen Lyons-Olski E-mail: ellen.lyons-olski@healthsouth.com Pinecrest Rehabilitation Hospital Spinal Cord Education Group 5360 Linton Blvd., Del Ray, Florida, 33484 Phone: (561) 495-3048 Contact: Mary Kaye Email: Mary.kaye@tenethealth.com Phone: (561) 495-3636 Contact: Christine Grant Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, Florida, 32308 Phone: (850) 656-4800 Contact: JoAnna Rodgers-Green Florida Rehab. and Sports Medicine 5165 Adanson St., Orlando, Florida, 32804 Phone: (407) 823-2967 Contact: Robin Kohn Email: rkohn@mail.ucf.edu Phone : (407) 623-1070 Contact: Carl Miller

HEALTHSOUTH - Support Group 90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866 Contact Vicki Yasova Tampa General Hospital SCI Support Group 2 Columbia Dr., Tampa, Florida, 33601 Phone: (800) 995-8544 GEORGIA Support Groups Columbus SCI Support Group Phone: (703) 322-9039 Contact: Ramona Cost E-mail: rvcost@mchsi.com Central Central GA Rehab Hospital 3351 Northside Dr., Macon, Georgia, 31210 Phone: (800) 491-3550 Ext. 643 Fax: (478) 477-6223 Contact: Kathy Combs ILLINOIS CHAPTER Spinal Cord Injury Association of Illinois 1032 South LaGrange Road, LaGrange, Illinois, 60525 Phone: (708) 352-6223 Fax: (708) 352-9065 Contact: Mercedes Rauen Website: www.sci-illinois.org E-mail: SCIInjury@aol.com INDIANA Support GroupS Calumet Region Support Group 2109 Cleveland St., Gary, Indiana, 46406 Phone: (219) 944-8037 Contact: Rita Renae Jackson Email: rjackson@ci.gary.in.us Northwest Indiana SCI Support Group 1052 Joliet Rd, Valparaiso, Indiana, 46385 Phone: (219) 531-0055 Contact: Joe White E-mail: heyjoewhite@comcast.net IOWA CHAPTER Spinal Cord Injury Association of Iowa 3936 NW Urbandale Dr, Urbandale, Iowa 50322 Phone: (515) 554-9759 Contact: Angie Plager Website: www.spinalcordiowa.org Email: SCIAofIowa@hotmail.com Kansas CHAPTERS Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: Linda.Klaiber@healthsouth.com KENTUCKY CHAPTER Derby City Area Chapter, NSCIA 305 W. Broadway, Louisville, Kentuky, 40202 Phone: (502) 588-8574 Contact: David Allgood, President Website: www.derbycityspinalcord.org E-mail: david.allgood@amerihealthmercy.org Support Group Friends with Spinal Cord Injuries 3785 hwy 95, Benton, Kentucky, 42025 Phone: (270) 205-5675 Contact: Anndrea Coffman E-mail: whelygurl@yahoo.com MARYLAND Support Group Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, Maryland, 21207 Phone: (410) 448-6307 Contact: Jenny Johnson Website: www.kernan.org/kernan/ MASSACHUSETTS CHAPTER Greater Boston Chapter, NSCIA New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 01801 Phone: (781) 933-8666 Fax: (781) 933-0043 Contact: Kevin Gibson Website: www.sciboston.com E-mail: sciboston@aol.com

SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, Massachusetts Phone: (617) 414-5000 Website: www.sciboston.com/support.htm Spaulding Support/Discussion Group 125 Nashua Street, Boston, Massachusetts Phone: (857) 222-5123 Contact: Betsy Pillsbury Website: sciboston.com/support.htm Whittier Westborough Support Group 150 Flanders Road, Westborough, Massachusetts Phone: (508) 871-2000 Ext. x2165 Contact: Deb Website: sciboston.com/support.htm Michigan CHAPTER MSCIA 1938 Woodshee Drive, Troy, Michigan 48083 Phone: (248) 288-2270 Contact: Stacey Murphy E-mail: smurphy@americaremedical.com MISSISSIPPI Support Group Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, Mississippi, 39532 Phone: (601) 969-4009 Contact: Michelle Bahret Website: www.lifeofms.com Email: mbahret@yahoo.com MISSOURI CHAPTER Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: Linda.Klaiber@healthsouth.com Support Group Southwest Center for Independent Living 2864 S. Nettleson Ave., Springfield, Missouri, 65807 Phone: (417) 886-1188 Contact: Marion Trimble Website: www.swcil.org E-mail: mtrimble@swcil.org NEVADA CHAPTER Nevada Chapter, NSCIA 4708 E. Rochelle Avenue, Las Vegas, Nevada, 89121 Phone: (702) 988-1158 Fax: (702) 951-9637 Contact: Brian “Moose” Hasselman Website: www.nscia-nv.org E-mail: b.moose@cox.net NEW HAMPSHIRE CHAPTER New Hampshire Chapter, NSCIA 21 Chenell Drive, Concord, NH 03053 Phone: (603) 216-3920 Fax: (603) 432-1549 Contact: Debbie Krider E-mail: debbie@gsil.org Website: www.nhspinal.org NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Phone: (585) 275-6097 Contact: Karen Genett E-mail: rochesternscia@yahoo.com Phone: (585) 275-6347 Contact: Amy Scaramuzzino E-mail: ascaramu@frontiernet.net New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine Attn: James Cesario 1 Gustave L. Levy Place, Box 1240 New York, New York, 10029 Phone: (212) 659-9369 Fax: (212) 348-5901 Contact: James Cesario or John Moynihan Website: www.nycspinal.org E-mail: NYCspinal@NYCspinal.org Support GroupS SCI Network of Central New York ARISE, 635 James Street, Syracuse, New York, 13203 Phone: (315) 464-2337 Fax: (315) 464-2305 Contact: Tammy Bartoszek E-mail: bartoszt@upstate.edu Phone: (315) 247-0927 Contact: Maria Froio E-mail: scin4cny@yahoo.com

Long Island Spinal Cord Injury Phone: (631) 221-9255 Contact: Ron Quartararo Website: www.testaverdefund.org E-mail: info@testaverdefund.org NORTH CAROLINA CHAPTER NCSCIA 3701 Wake Forest Rd., Raleigh, North Carolina, 27609 Phone: (919) 350-4172 Contact: Deborah Myers E-mail: dmyers8@triad.rr.com Contact: Karen Vasquez E-mail: kvasquez@wakemed.org OHIO CHAPTERS Northwest Ohio Chapter, NSCIA 13745 Archbold Whitehouse Rd Swanton, Ohio 43558 Phone: (419) 875-4029 Contact: Hank Burney, President Website: www.nwonscia.org E-mail: bjbiii77@windstream.net Phone: (419) 531-6401 Contact: Becky Gay E-mail: beckkevn1@aol.com Northeast Ohio Chapter, NSCIA c/o Jeff Schiemann, PO Box 934 Chesterland, Ohio 44026 Phone: (440) 442-5550 Fax: (440) 442-5789 Contact: Jeff Schiemann E-mail: jjscpajd@aol.com Website: www.metrohealth.org/NORSCIS Support Group Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, Ohio, 44484 Phone: (330) 841-3856 Contact: Rebecca Lebron E-mail: rlebron@forumhealth.org Phone: (330) 889-2158 Contact: Rick Ackerman E-mail: bird196@aol.com PENNSYLVANIA Support GroupS Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, Pennsylvania, 16602 Phone: (800) 873-4220 Greater Pittsburgh Rehabilitation Hospital 2380 McGinley Rd., Monroeville, Pennsylvania, 15146 Phone: (800) 695-4774 Contact: Kristy Nauman E-mail: kristy.nauman@healthsouth.com Delaware Valley SCIA 2610 Belmont Ave., Philadelphia, Pennsylvania, 19131 Phone: (215) 477-4946 Contact: Bruce McElrath Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, Pennsylvania, 19102 Phone: (215) 587-3174 Fax: (215) 568-3736 Contact: Marie Protesto Website: www.mageepeers.org Rehabilitation Hospital of York 1850 Normandie Dr., York, Pennsylvania, 17404 Phone: (800) 752-9675 Ext. 720 Phone: (717) 767-6941 Contact: Tammy Derk E-mail: tammy.derk@healthsouth.com SOUTH CAROLINA CHAPTER SCSCIA 2935 Colonial Drive, Columbia, SC 29203 Phone: (866) 445-5509 (toll free) Phone: (803) 252-2198 Contact: Diane Epperly, Executive Director E-mail: scscia@att.net Contact: Rafe Ellisor, Chairman E-mail: rafe.ellisor@healthsouth.com Website: www.scspinalcord.org Support GroupS Chester Area SCI Support Group Purity Presbyterian Church on 135 Wylie Street, Chester, South Carolina, Phone: (803) 385-2270 Contact: Bill McDonough E-mail: leftwich@sccoast.net Florence, SC Area SCI Support Group Phone: (843) 679-9932 Contact: Ronnie McFadden E-mail: ronnnie1mc@yahoo.com

Greenville Area SCI Support Group 190 McCall Road, Honea Path, South Carolina, 29654 Phone: (864) 369-2791 Contact: Byron Armentrout E-mail: wheelin19@aol.com North Charleston Area SCI Support Group 172 Bayboro Circle, Goose Creek, South Carolina, 29445 Phone: (843) 863-1165 Contact: Ruth Jones Phone: (843) 792-2605 Contact: Richard Aust E-mail: aust@musc.edu Orangeburg, SC Area SCI Support Group 627 Flatwoods Road, Bowman, SC 29018 Phone: (803) 829-2043 Contact: Rebecca Felder E-mail: Rebecca.felder@yahoo.com Spartanburg, SC Area SCI Support Group 101 St. Matthews Lane, Spartanburg, South Carolina, 29301 Phone: (864) 595-1947 Contact: Dot Colson E-mail: DColson@Dennys.com York/Rock Hill Area SCI Support Group Phone: (803) 366-5659 222 S. Herlong Avenue, Rock Hill, SC 29732 Contact: Bob Alders E-mail: bobcatawba@comporium.net Tennessee CHAPTER Tennessee Spinal Cord Injury Association (TSCIA) 105 Ballentrae Drive, Hendersonville, TN 37075 Phone: (615) 947-6204 Contact: Cheryl Stowe, Executive Director E-mail: cherlystowe@yahoo.com Website: www.standuptn.com TEXAS CHAPTER Rio Grande Chapter Highlands Regional Rehab. Hospital 1395 George Dieter, El Paso, Texas, 79936 Phone: (915) 298-7241 Fax: (915) 298-7298 Contact: Sukie Armendariz Contact: Ron Prieto E-mail: riograndenscia@aol.com VIRGINIA CHAPTER Spinal Cord Injury Association of Virginia P.O. Box 8326 Richmond, VA. 23226 Phone: (804)726-4990 Fax: (888) 752-7857 Contact: Steve Fetrow Email: steve.fetrow@sciava.org Website: www.sciava.org WASHINGTON Support Group SCI Forum University of Washington Medical Center Cafeteria Conference Room B/C 1959 NE Pacific St, Seattle, Washington 98195 Phone: (206) 685-3999 Contact: Cynthia Salzman E-mail: Csalzman@u.washington.edu WEST VIRGINIA Support Group West Virginia Mountaineer Support Group P.O. Box 1004, Institute, West Virginia, 25112 Phone: (304) 766-4751(W) Fax: (304) 766-4849 Contact: Steve Hill E-mail: steveh@mail.drs.state.wv.us WISCONSIN CHAPTER NSCIA Southeastern Wisconsin 1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215 Phone: (414) 384-4022 Fax: (414) 384-7820 Contact: NSCIA-SWC Office E-mail: office@spinalcordwi.org Contact: John Dziewa E-mail: president@spinalcordwi.org Website: www.spinalcordwi.org

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


Vol. 6, No. 6

RaRe DeDication.

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Craig Hospital in Denver is

exclusively dedicated to specialty rehabilitation and research for persons with spinal cord injury and traumatic brain injury. Craig is committed to helping rebuild lives following catastrophic injury — and to unsurpassed clinical outcomes, patient and family satisfaction, and financial value for the insurance industry and society. As an international leader in the field, Craig consistently serves more than 1,700 inpatients

and outpatients from 47 to 50 states each year. Craig is federally designated by NIDRR as a Model Systems Center for SCI and TBI, and is the NIDRR TBI National Data and Statistical Center. Craig has been ranked in the Top 10 Rehab Hospitals for 20 years — every year since the rankings began in 1990, and is one of only a few Magnet® Recognized rehabilitation hospitals in the U.S. The success of our patients is due to Craig’s focused expertise and resources, remarkable longevity of staff and physicians, large patient milieu, family services and on-site housing, financial stability and an upbeat culture of contagious caring and compassion. As a non-profit, independent hospital governed by a volunteer board of directors, the Craig “family” is dedicated to delivering the highest quality of rehabilitation treatment available anywhere. Ask anyone who has ever been associated with Craig Hospital and you’ll receive a consistent answer: Craig is a very special place. We look forward to serving you.

Craig Hospital Caring exclusively for patients with spinal cord and brain injuries.

3425 South Clarkson Street | Englewood, Colorado 80113 |

www.craighospital.org

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Vol. 6, No. 6

Self-Cath®

Trusted for over 30 years

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

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

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

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

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

2.

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

3.

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

4.

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

For the Medical Supplier:

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

For more information, please visit www.coloplastmedicare.com or www.us.coloplast.com, or call the Coloplast Help Line at 1-800-525-8161. Coloplast Corp. Minneapolis, MN 55411 1.800.533.0464 usmedweb@coloplast.com www.us.coloplast.com

YCYC-Ad_SCILife_8.5x11.indd 1

and Self-Cath ® are registered trademarks of Coloplast A/S.

© 2008-12. All rights reserved. Coloplast Corp., Minneapolis, MN USA.

12/22/08 1:29:14 PM


SCILife, Vol. 6, № 6