General Education
Sometimes you will need information quickly, and there are [great] SCI Organizations that rise to the challenge. The Christopher and Dana Reeve Foundation offers support from trained information specialists who are available by phone or e-mail. This organization will also connect you with a peer mentor who shares similar SCI characteristics.
Disability Policy and Advocacy
Disability rules are very important for people with Spinal Cord Injuries (SCI). These rules help them get the support, tools, and chances they need. Laws like the Americans with Disabilities Act (ADA) make sure people with disabilities are treated fairly at work, in public places, and on transportation. These rules help people with SCI be more included and live more independently. Without strong disability rules, it would be much harder for them to get healthcare, therapy, jobs, and be part of everyday life. This would make their challenges even harder.
Advocacy is very important for people with Spinal Cord Injuries (SCI). It helps break down systemic barriers like inaccessible spaces and unfair treatment. Advocacy also helps make sure people with SCI can get the healthcare, therapy, and tools they need. It helps their voices be heard so they can make their own choices and help change rules to get better support. Advocacy also teaches others about SCI, fights stigma, and builds caring communities. This helps people with SCI not just live, but live with respect, chances to grow, and be part of the world around them.
Here are some prominent spinal cord injury (SCI) policy advocacy groups:
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United Spinal Association: One of the oldest and biggest groups in the U.S. for people with spinal cord injuries, the United Spinal Association has worked hard to support disability rights, including helping pass the ADA. They focus on helping and speaking up for people with spinal cord injuries and all wheelchair users.
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Christopher & Dana Reeve Foundation: This national group works to find ways to treat and cure paralysis caused by spinal cord injuries and other neurological disorders. They also work hard to make life better for people living with disabilities.
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Paralyzed Veterans of America (PVA): Started in 1946 by soldiers who came home from World War II with spinal cord injuries, PVA has worked hard to help its members get better healthcare, support research for spinal cord injuries, and make sure people with these injuries get the benefits they need.
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North American Spinal Cord Injury Consortium (NASCIC): NASCIC brings together groups from across the U.S. and Canada that speak up for people with spinal cord injuries. They work to make research, healthcare, and policy better for people living with SCI.
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American Association of People with Disabilities (AAPD): The AAPD is a national nonprofit group that helps speak up for all people with disabilities, not just those with spinal cord injuries. Their work helps make sure everyone’s voice is heard, which also helps people with SCIs.
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Determined2Heal Foundation: Founded by a quadriplegic, this organization runs SPINALpedia.com, providing information and peer mentoring for newly injured individuals, including on topics like legal and employment assistance.
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Academy of Spinal Cord Injury Professionals (ASCIP): This group’s advocacy team works to teach people and share helpful tools so more people can learn about and join in advocacy. Their goal is to make healthcare and life better for people with spinal cord injuries or diseases (SCI/D).
SCI Research Advocacy Course
The North American SCI Consortium has designed a course to increase the knowledge of the research process so that individuals with SCI and their support persons feel prepared to serve as research advisors and that SCI researchers and healthcare providers are better able to effectively partner with the SCI community.
SCI Specialty Care Challenges
Because spinal cord injuries (SCI) don't happen to a lot of people, like strokes do, the doctors and nurses at skilled nursing facilities (SNFs) or long-term acute care (LTAC) places might not know everything about SCI. Two groups in the U.S. that help people with SCI, called ASIA and ASCIP, have worked with doctors and people with SCI to make helpful and easy-to-use information for busy providers. You can find these guides online. Also, the Paralyzed Veterans of America has made clinical practice guidelines for medical helpers who work with people with SCI. You can share these with health professionals.