Spinal Cord Injury/Disorder Groups Unite to Advance National Policy Issues

January 3, 2008
Kennedy Krieger's International Center for Spinal Cord Injury Joins with Organizations from around the Country

(Baltimore, MD) - At a recent summit in Washington, DC, 19 national organizations and institutions working to improve the lives of individuals with spinal cord injuries or disorders joined together to establish the Spinal Cord Leaders Council. The purpose of the Leaders Council is to advance federal legislative and regulatory policies that would empower persons with SCI/D to lead more active and productive lives.

Participating organizations in the Spinal Cord Leaders Council include the Christopher and Dana Reeve Foundation, the Kennedy Krieger Institute, the National Spinal Cord Injury Association, the Paralyzed Veterans of America, the Sam Schmidt Paralysis Foundation, the Miami Project to Cure Paralysis, Craig Hospital, the American Spinal Injury Association, the Commission on the Accreditation of Rehabilitation Facilities, the National Rehabilitation Hospital, the Shepherd Center, the United Spinal Association, the University of Utah-Rehabilitation Services, the Rehabilitation Institute of Indianapolis, the Keck Center for Collaborative Neuroscience, the Craig H. Neilsen Foundation, the ITEM Coalition, New Mobility magazine, the American Association of SCI Nurses, the American Association of SCI Psychologists and Social Workers, the American Paraplegia Society and the American Spinal Injury Association.

Launched during a 2006 summit on spinal cord injury, hosted by the National Spinal Cord Injury Association, the Spinal Cord Leaders Council was formalized by the leaders of the 19 active organizations in November 2007. The New York City-based United Spinal Association was elected secretariat of the Council, and its president, Paul J. Tobin, was elected the Council's first chairperson. Tobin noted, "the formation of the Council is a unique opportunity to pool resources and grass roots voices of people with SCI/D in our nation to achieve breakthroughs on issues too long neglected."

The Council selected three major issues for its 2007-2008 Policy Agenda: first, to abolish the Centers for Medicare and Medicaid Services "in the home" policy, which allows issuance of a power-operated wheelchair or scooter to a beneficiary only if it is needed to move within the home, but bans this type of wheelchair if needed to move within the community; second, enactment by the Congress of the Christopher and Dana Reeve Paralysis Act to promote spinal cord paralysis research and to improve SCI/D rehabilitation; and third, ensure that critical health care issues facing Americans with spinal cord injuries and dysfunction are clearly articulated in the health care platforms of the 2008 presidential candidates.

About the International Center for Spinal Cord Injury

The International Center for Spinal Cord Injury at the Kennedy Krieger Institute is the first center of its kind dedicated to restoration recovery of chronic spinal cord injury and paralysis in children. The interdisciplinary team at ICSCI is committed to the philosophy that with the right combination of therapies, recovery is always possible-even many months or years after an injury. The center's therapy programs follow techniques that have shown great promise in helping individuals with chronic spinal cord injuries recover sensation, movement and independence, as well as achieve improved health and quality of life. For more information on ICSCI, visit www.spinalcordrecovery.org. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.

About the United Spinal Association

The United Spinal Association is a non-profit organization dedicated to improving the quality of life for all Americans with spinal cord injuries or disorders. For over 60 years, we have fought for veteran's rights and for the rights of all individuals with disabilities. Our initiatives in research and education, government policy and legislation, civil rights and advocacy, accessibility and architectural design, and competitive athletics ensure that veterans and all Americans with spinal cord injury and disease live healthier, more independent and productive lives as active members of their communities. For more information, please visit www.unitedspinal.org or call 800-404-2898.