Model System:
SCIReference Type:
Journal articleAccession No.:
Journal:
Archives of Physical Medicine and RehabilitationYear, Volume, Issue, Page(s):
, In Press, In Press, Not yet availablePublication Website:
https://www.archives-pmr.org/article/S0003-9993(26)00572-1/abstractAbstract:
Objective
To identify the types of government financial assistance programs accessed by individuals and their families after spinal cord injury (SCI) and user experiences.
Design
Qualitative analysis of data collected from focus groups conducted during the initial phase of a mixed-methods questionnaire development project.
Setting
Ten 1-hour online focus groups held via Zoom for Healthcare in English or Spanish.
Participants
Adults with chronic impairment from traumatic or nontraumatic SCI recruited from 8 SCI Model Systems Centers located in California, Colorado, Georgia, Michigan, Minnesota, New Jersey, Texas, and Virginia (N=47).
Interventions
Not applicable.
Main Outcome Measures
Not applicable.
Results
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. Although 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 (eg, vehicle repairs, wheelchair replacements, and home modifications), and future needs associated with aging with SCI.
Conclusions
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.
Author(s):
Amanda L. Botticello, Stephanie Jimenez, Trevor Dyson‑Hudson, Denise C. Fyffe, Susan Charlifue, Jeffery W. Rankin, Debbie Coleman, Angela Hanks, Michelle A. Meade, Ronald T. Seel, Librada CallenderParticipating Centers:
- Northern New Jersey Spinal Cord Injury System
- Rocky Mountain Regional Spinal Injury System
- Southern California Spinal Cord Injury Model System
- Southeastern Regional Spinal Cord Injury Model System
- Minnesota Regional Spinal Cord Injury Model System
- Michigan Spinal Cord Injury Model System
- Virginia Traumatic Brain Injury Model System
- North Texas Traumatic Brain Injury Model System