Key Topics Related to Developing Policy-oriented Research to Benefit People Living with Spinal Cord Injury

Last Updated: 12/07/2020

This resource was developed to help researchers conduct policy focused research to support people with spinal cord injury (SCI). It outlines key policy priorities related to people living with SCI and provides links to organizations advocating for these priorities. Individuals with SCI often face many challenges due to their injury, especially when it comes to accessing healthcare, finding employment, and participating in everyday life. To help individuals with SCI access opportunities in these areas and foster their independence, it is important for SCI researchers to identify and develop research to support these priorities. Another way to advocate for these issues is to be in conversation with organizations that support funding for state and federal programs that help people with SCI to address related challenges, and research about SCI. The organizations outlined in this resource may also be viewed as potential research partners that researchers can engage to make policy research more relevant to stakeholders.

Key policy issue 1: Access to affordable healthcare

Individuals with SCI often lack access to high quality, affordable healthcare. The following policy issues address access to affordable healthcare.

  • Increased access to medical equipment, therapy, and prescription drugs.
  • Improved medical insurance coverage, especially for assistive technology (e.g., wheelchair accessories).

Key policy issue 2: Employment and independent living

Individuals with SCI face many challenges to find gainful employment and live independently. The following policy issues address employment and independent living.

  • Increased access to affordable housing
  • Improved access to transportation
  • Expanded coverage for long-term services
  • Increased access to competitive employment

Key policy issue 3: Consumer directed health care and community integration

Individuals with SCI often lack access to community-based services and customized care, which may inhibit their participation in society. The following policy issues address consumer healthcare and community integration.

  • Increase the use of home and community-based services and provide opportunities for individuals with SCI to receive in-home services.
  • Advance best practices for delivery of healthcare and provide options to individuals to help them pay for these services.

Key policy issue 4: Disability rights

To achieve independence, individuals with SCI need laws such as the Americans with Disabilities Act and other similar laws that protect against discrimination to be continually applied and advanced.

  • Safeguard laws that protect against discrimination for individuals with SCI.

Key policy issue 5: Funding for SCI Research

Funding for SCI research is essential for advancing treatment practices that improve the health and wellness of individuals with SCI.

  • Ensure adequate funding for SCI research.

Disclaimer

The contents of this policy brief were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DP0082). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this brief do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.