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Spinal Cord Injury Network

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SCI CONNECTOR November 2004


Hands are vital. With your hands, you can play, comfort, cheer, encourage, and you can fight—fight against ignorance and apathy. When you give to Community Health Charities (or Combined Federal Campaign) organizations like the Spinal Cord Injury Network, your helping hands are improving and even saving lives. Thank you for not being a silent partner. Lend a hand to all volunteer SCI Network through the CHC and/or CFC today. Our number in both fall 2004 campaigns is 6025.

SCI Network, Community Health Charities of the National Capital Area, and the CFC would like to thank all of you who have generously supported our members throughout the years. The compassion and spirit of giving is greatly appreciated. Each dollar donated to SCI Network makes a dramatic difference in the life of a person fighting to improve his or her life, because such a small percentage of your dollar goes to administrative costs: no salaries, no benefits; staff at SCI Network is all volunteer, all the time. The Network Provides information and referral, advocacy and visitation, peer and family support groups, and attendant care referrals from our Personal Assistant Registry for persons with mobility impairing conditions. We also operate an art gallery in which artists with and without disabilities display and sell their work.

Although services are provided primarily to the Washington Metropolitan area, it is not uncommon to furnish information and referral throughout the Mid-Atlantic. We sponsor, and are the fiscal agent for, the Adventist Rolling Knights, the best wheelchair basketball team in the area. In order to keep our members, a mailing list of approximately 1600 persons informed and up-to-date on the developments in technology, medicine and especially legislation affecting our community, we operate www.spinalcordinjury.net and we publish an award winning monthly newsletter: The SCI CONNECTOR. So give us a hand. Help us help. If your organization offers giving through the CHC or CFC, please remember Spinal Cord Injury Network, #6025.


Washington, DC- The National Spinal Cord Injury Association (NSCIA) announces the Summit on Spinal Cord Injury and the first Spinal Cord Injury Hall of Fame, May 9-11, 2005 at the Mayflower Hotel in Washington, DC. The Christopher Reeve Paralysis Foundation and The Medtronic Foundation are co-sponsoring the event. Co-sponsorship from other major corporate, foundation and spinal cord injury groups is pending. NSCIA is dedicated to helping people with spinal cord injury and disease (SCI/D) to achieve their highest levels of independence, health and personal fulfillment. Too often health and societal barriers block these achievements. Secondary conditions like pressure sores are one such barrier.

The world mourns the recent death of Christopher Reeve, which was caused by an infection from a pressure sore. Societal obstacles like architectural barriers, inaccessible transportation, and lack of attendant services and employment opportunities also impact the quality of life for those with SCI/D. Many of these societal barriers flow from outdated public policy a seminal issue to be addressed in the Summit. The Summit on Spinal Cord Injury is designed to galvanize all stakeholders in the SCI/D community so that we can celebrate hard won victories, define common priorities and develop shared agendas for addressing them.

Leaders in public policy, rehabilitation, research, healthcare, business, and disability advocacy will be joining forces and participating. There will be workshops on the state of SCI/D, a public policy seminar, Hill visits, and action-planning sessions. “NSCIA believes that the whole is greater than the sum of its parts,” stated Marcie Roth, CEO of NSCIA. “The Summit on Spinal Cord Injury seeks to maximize cooperation among organizations who share a common passion and commitment for our work in the SCI/D arena. Through this collaborative effort we will be able to use our collective strength to make real progress.² Roth continued. A highlight of the Summit will be the creation of the SCI Hall of Fame. The Inductee Ceremony will recognize leaders and allies with SCI/D and organizations for promoting positive images about disability and making significant contributions to all facets of society.

"The Summit will provide opportunities to share agendas, reach consensus, expand partnerships and celebrate the power and contributions of people with SCI/D,” noted Mark Johnson, Co-Chair of the Summit and Director of Advocacy at the Atlanta Based Shepherd Center for Catastrophic Care. Each day, thirty new people sustain a spinal cord injury. The National Spinal Cord Injury Association, founded in 1948, is the nation’s oldest and largest civilian organization dedicated to improving the quality of life for the hundreds of thousands of Americans living with the results of spinal cord injury and disease and their families. More information will be available on this web site as they become available.


LegislativeAlerts@Unitedspinal.org, The United Spinal Association, shares the following request: This is a critical time for the disability and aging communities. The Centers for Medicare and Medicaid Services (CMS), the federal agency that runs the Medicare program, is in the process of developing new Medicare coverage guidelines for power wheelchairs. United Spinal Association commends CMS for revising this outdated coverage policy. Unfortunately, the agency continues to state that these revisions will not address the problematic statutory language “used in the patient’s home”.

Currently Medicare will only cover power wheelchairs for beneficiaries who need to use them in their home. If a beneficiary is able to move from room to room in their own house (with or without the assistance of a walker, cane, or walls and banisters), but they are unable to walk to work, school, or even their mailbox at the end of their driveway, then Medicare will notpay for a wheelchair because it is being used outside the home! Medicare’s archaic policies and misguided practices are limiting the independence, stifling the potential, thwarting the ambition, and jeopardizing the well-being of many American wheelchair sers. We know that the health of individuals with disabilities, both physical and mental, is wholly intertwined with their ability to be as functionally independent as possible.

Therefore, any restriction that stifles the independence of beneficiaries, such as Medicare’s power wheelchair coverage policy regarding “in the patient’s home,” also threatens their health and well-being. We need to let CMS know that the “in the patient’s home”restriction is harmful to individuals with disabilities by limiting access to wheelchairs and compromises our independence, health and well-being. United Spinal Association is a member of the ITEM Coalition, a national, consumer-led coalition with over 70 member organizations working to improveaccess to assistive devices, technologies and related services. We urge you to help us, and the ITEM Coalition, fight this overly restrictive policy.

We need your stories regarding problems obtaining access to the wheelchairs that you or someone you know need to be healthy, independent and functional. We welcome stories not directly related to the policy change, including those that help people understand the barriers presented by the “in the patient’s home” restriction under Medicare coverage policy. Please submit your story to us via email at LegislativeAlerts@Unitedspinal.org, or call us at 202-331-1002 for more information. If you would like us to share your story as part of the Coalition’s public education campaign, please submit your contact information, including your name and a phone number where we may reach you.

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