Who Benefits? a Mixed Methods Study of Financial Assistance and Unmet Financial Needs After Spinal Cord Injury 9063

Research Objectives: To identify the financial resources used by people living with spinal cord injury (SCI), understand user experiences with government financial assistance programs and other resources accessed to cover unmet needs and living expenses.

Design: A mixed methods observational study.

Setting: Participants recruited from 8 SCI Model Systems Centers participated in one of 10 online focus groups conducted between August 2022 and March 2023 in either English or Spanish.

Participants: Forty-seven adults with chronic impairment from either traumatic or non-traumatic SCI who were at least one-year post-injury.

Interventions: Not applicable.

Main Outcome Measures: A semi-structured focus group guide was used to lead discussions about government financial assistance programs and non-governmental sources of financial support that participants had used and continued to use after injury. Using a grounded theory approach and an iterative, qualitative coding process, recurring themes were identified. The financial resources mentioned by the participants were then summarized to identify frequencies and patterns in participants’ experiences.

Results: Participants were from 18 states and represented all four regions of the U.S. The average age was 48.5 years (SD=11.4), and the average number of years post-injury was 16.7 (SD=12.7). The participants used a wide range of government programs for financial support including income assistance, healthcare, vocational rehabilitation, and housing, transportation, and food assistance programs. These programs were described as essential for independent community living, particularly by providing cash for living expenses, medical services, and medical devices. Confusion with program eligibility, asset limitations, and not enough income to meet basic needs were identified as key barriers to financial stability. Frequently mentioned unmet needs included transportation (i.e., for the purchase and/or modification of an adapted vehicle), food, and medical devices and supplies. Most of the sample discussed receiving cash, material goods, or help with basic needs and medical care expenses from family and friends (64%) and non-governmental community resources, such as non-profit or religious organizations and fundraisers (60%).

Conclusions: People with SCI in the U.S. report the necessity of receiving benefits from a wide range of government programs to support their independent living needs. However, widespread gaps exist, and many people find it necessary to seek financial assistance from their families and communities. Continuing to find ways to simplify and expand access to formal assistance is necessary not only to alleviate the financial strain that occurs with SCI, but to promote greater financial security and independence for this population.

Author(s) Disclosures: None