National SCI Awareness Month – Tools and Resources for People with SCI, Caregivers, Family Members, and Others

September is National Spinal Cord Injury Awareness Month. According to the National Spinal Cord Injury Statistical Center’s annual Facts and Figures report (PDF), about 17,800 people experience a spinal cord injury (SCI) each year. As these individuals, their families, and their care teams are starting down the path of life with SCI, here are a few tools and resources from the NIDILRR community and elsewhere which may help answer some of questions and challenges that come up along that path.

Getting the Facts

The Model System Knowledge Translation Center collaborates with the Model SCI System Centers to create information resources for people living with SCI and their supporters. Explore the collection by topic, from the basics of SCI to complex issues like employment and hiring and managing personal care attendants.

The Reeve Foundation’s Paralysis Resource Center’s Living with Paralysis resource collection covers health, rehabilitation and recovery, choosing wheelchairs and other technology, and much more.

Mapping the Path

Several NIDILRR grantees have developed tools to help people with SCI look ahead to life after injury. These calculators use data collected over more than 40 years to understand how factors like age, injury type, activity levels, and health behaviors impact life expectancy for people with SCI. While these tools should not be used as the basis for important healthcare decisions, they can help guide discussions with healthcare providers.

  • Life Expectancy Calculator from the National Spinal Cord Injury Statistical Center (NSCISC) uses data collected from persons treated at any current or previously funded Model SCI System Centers. It uses demographics and injury information to estimate life expectancy based on average experiences of similar individuals.
  • SCI Facts and Figures at a Glance (PDF) includes average yearly expenses for people living with SCI and estimated lifetime costs. These figures include health care and living expenses.
  • SCI Life Expectancy Calculator from the Health, Employment, and Longevity Project (HELP) uses data from a study of socioeconomic factors and life expectancy after SCI. Learn more about this calculator in the FAQ (PDF).
  • Unintentional Injury Calculator and the Fall-Related Unintentional Injury Calculator, also from HELP, can help users understand the risk of unintentional injury for people with SCI, such as burns, dislocations, and broken bones. These calculators take into account factors like age and injury level, but also asks about medication and substance use.

Connecting to Community

People with SCI and their families can turn to several resources to find support and information online and in their community. Here are a few resources, funded by the Administration for Community Living, that provide such support:

  • In addition to publishing a wealth of information resources, the Paralysis Resource Center has a Peer & Family Support Program. People with SCI and their supporters can connect with an experienced peer mentor who is living with paralysis and understands their experience.
  • Centers for Independent Living are community organizations run by and for people with disabilities. They have information and resource specialists to connect with state and local programs. Many also offer employment counseling, housing resources, activity programs, and support groups. Find a center serving your community.
  • State Assistive Technology Projects assist people with disabilities in accessing technology (AT) solutions to live independently. They have information about a wide array of AT solutions, from home safety products to modified vehicles. Find your state’s AT Program.

These are just a few resources available to help people new to SCI learn about their injury and find the right supports for the road ahead. If you would like assistance in finding more information, either online or in your community, please contact our information specialists!

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