Model System:

SCI

Reference Type:

Journal article

Accession No.:

Journal:

Archives of Physical Medicine and Rehabilitation

Year, Volume, Issue, Page(s):

, In Press, In Press, Not yet available

Abstract:

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 Callender