New SCI coalition will “speak with one voice” to lawmakers
By Rob Ingraham
In a broad new initiative aimed at coordinating national legislative and policy concerns, nearly 20 leading organizations dedicated to improving the lives of people with spinal cord injuries and disorders have formed the Spinal Cord Leaders Council. The coalition will, for the first time, provide a single forum for foundations, hospitals, associations, research facilities, and regulators to articulate priorities for lawmakers and policy-making groups across the country on issues important to the SCI/D population.
United Spinal Association was elected Secretariat of the new organization and President and CEO, Paul J. Tobin was elected Chair. “A coalition like the Spinal Cord Leaders Council has been a dream of ours for many years and we’re delighted to be part of bringing this powerful idea to fruition,” Tobin said. “By working together and speaking with one voice on policy and legislative issues, we can accomplish far more than we can individually and I am certain that the Council will become a major new force for improving the lives of people with spinal cord injuries and disorders around the country.”
In addition to United Spinal, participating organizations are the Christopher and Dana Reeve Foundation, the Kennedy Kreiger Institute, National Spinal Cord Injury Association, 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 Hospitals (CARF), National Rehabilitation Hospital, the Shepherd Center, the University of Utah, the Rehabilitation Institute of Indianapolis, and the Keck Center for Collaborative Neuroscience.
The group’s 2007-2008 Policy Agenda targets three major issues:
(1) Durable Medical Equipment and the controversial “In the Home” restrictions on wheelchair coverage from the Centers for Medicaid and Medicare Services. Current policy dictates that if a person with a disability needs a wheelchair for use only “in-the-home”—that is, between his or her bedroom, bathroom or kitchen—Medicare may cover the cost of a wheelchair or scooter. But if the individual wants to travel outside the home, to a pharmacy, for example, or a grocery store, bank, place of worship, physician’s office, work, or school, coverage is frequently denied. The Council will work to change this unreasonable policy.
(2) The Christopher and Dana Reeve Paralysis Act. H.R. 1727 was recently passed in the House of Representatives. This legislation seeks to enhance and promote research into paralysis and to improve rehabilitation and the quality of life for persons living with paralysis and other physical disabilities. A similar bill is pending in the Senate. The Council will push for full approval and implementation by Congress.
(3) Candidate Healthcare Platforms. The Council will seek to ensure that candidates are fully informed on critical healthcare issues of importance to all people with disabilities and demand that all healthcare issues are fully addressed in the 2008 national debates. Getting the message out efficiently is one of the Council’s primary goals and Lesley M. Hudson, MA, Executive Director of the American Spinal Injury Association, said, “The Spinal Cord Leaders Council is a timely and appropriate step forward. Bringing together key leaders from associations whose members are dedicated to the improvement of all aspects of medical care and quality of life for individuals with spinal cord injury and disease adds a critical efficiency to the communication process.”
