Studies from the Center for Outcomes and Assessment Research at Kessler Foundation
Navigating Government Programs After Spinal Cord Injury Public assistance can ease financial strain, but complex rules may add new challenges
The Key Takeaway: Government programs can support community living, but confusing rules and limits often make them difficult to access.
Terms to Know: Spinal cord injury: Damage to the spinal cord which can cause permanent paralysis that affects movement, sensation, and other body functions.
A spinal cord injury changes daily life in an instant, and it often changes a family’s finances just as quickly. Government programs can ease that pressure by helping to pay for care, equipment, and the basic needs that make community living possible. But attaining that help is rarely simple. Kessler Foundation Researchers at the Northern New Jersey Spinal Cord Injury System (NNJSCIS) and seven additional collaborating spinal cord injury model systems centers across the United States wanted to hear directly from people living with spinal cord injury about their experiences accessing financial assistance after injury. Ten 1-hour online focus groups were conducted using Zoom for Healthcare between August 2022 and March 2023, in either English or Spanish. In these conversations, participants described what government programs they used, what challenges they encountered, and how public assistance affected their daily lives
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Social Security Disability Insurance: A federal program that provides income support to people whose disability limits their ability to work. Medicaid: A government health insurance program that helps cover healthcare costs for eligible people with limited income and resources.
(Continued, from first page) “This project was a deep dive into the topic of financial assistance and financial strain experienced by people living with spinal cord injury. The goal was to develop a novel tool that could be used to assess this topic across the spinal cord injury population over time,” said Amanda L. Botticello, PhD, MPH, lead investigator on the study. Participant roles Participants shared personal experiences about income support, healthcare coverage, employment support, and assistance for basic living needs Pros • Income support: Social Security Disability Insurance and Supplemental Security Income helped replace lost wages and provide financial stability • Healthcare coverage: Medicare, Medicaid, and Veterans Affairs programs helped cover medical care, wheelchairs, supplies, home care, and services that support independence • Basic living needs: Housing, food, transportation, and utility assistance programs helped some people meet everyday expenses
• Employment support: Medicaid Buy-In helped some participants return to work and many used vocational rehabilitation programs to support their work goals through education, job training, adaptive equipment, vehicle modifications, and transportation needed for work Cons • Barriers to access: Participants described confusing rules, denials, long waits, overpayment issues, and difficulty finding reliable information • Limits on savings: Income and asset restrictions made it difficult to save for emergencies, equipment, home modifications, or future needs What can be done? Participant stories point to a need for clearer rules, better guidance, and more flexible support, according to Dr. Botticello. The study suggested practical ways to make benefits easier to use including shorter acceptance waiting times, and reduced denials caused by paperwork issues. Support should not end once the first form is approved, Dr.
Botticello stated. Life keeps moving. People living with SCI return home and work, grow older, and may face new healthcare costs. Ongoing benefits counseling could help them avoid overpayments, maintain coverage, and plan for equipment, transportation, home changes, and personal assistance. Learn more: This Real-Life Science summary is based on the peer-reviewed study “Qualitative Insights into Government Financial Assistance Use After Spinal Cord Injury,” published in Archives of Physical Medicine and Rehabilitation (2026). The lead researcher was Amanda L. Botticello, PhD, MPH, associate director, Center for Outcomes and Assessment Research at Kessler Foundation. Additional investigators included colleagues from Kessler Foundation and collaborating spinal cord injury model systems centers across the United States.
To read the full study, scan the QR code below or visit: doi.org/1 0.1080/17581869. 2025.2554561 Easy-to-read Real-Life Science summaries explain how our research applies to everyday health, work, and living.
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