Qualitative insights into government financial assistance use after spinal cord injury.

Abstract

To identify the types of government financial assistance programs accessed by individuals and their families after spinal cord injury (SCI) and user experiences. Qualitative analysis of data collected from focus groups conducted during the initial phase of a mixed-methods questionnaire development project. Ten 1-hour online focus groups held via Zoom for Healthcare in English or Spanish. Not applicable. Forty-seven community-dwelling adults with chronic impairment from traumatic or non-traumatic SCI, recruited from eight SCI Model Systems Centers located in California, Colorado, Georgia, Michigan, Minnesota, New Jersey, Texas, and Virginia. Not applicable. Analysis revealed two overarching domains of government program use and experiences, each with interconnected themes. Participants reported accessing income assistance, health insurance, vocational rehabilitation, and programs providing in-kind support for housing, food, transportation, and utilities. While these programs offered essential financial support, participants described challenges including denials, unclear eligibility criteria, and long waiting periods, which contributed to confusion and diminished quality of life. Income and asset thresholds restricted the ability to save for emergencies, major expenses (e.g., vehicle repairs, wheelchair replacements, home modifications), and future needs associated with aging with SCI. Government financial assistance programs are critical for replacing lost income, reducing material hardship, and meeting basic living needs after SCI. Efforts to simplify and expand access are needed to reduce financial strain and promote greater financial independence and a better standard of living among this population.