“You Need to Strategize and You Also Need Recommendations, Advice, and Counsel from Others.” Disability Income Insurance: Perspectives of People with MS and Care Partners

Background: There has been considerable change in the personal insurance environment since the last comprehensive insurance survey of people with MS (PwMS) was conducted. The Affordable Care Act has been a boon in terms of access but many individuals have found its cost prohibitive with regards to co-pays and deductibles. Since the economic down turn of 2008, many PwMS, like the rest of the working population, have experienced loss of or reduction in work, the primary source of disability income, long term care and life insurances. In order to gain a greater understanding of the personal insurance environment and the related changes in coverage, concerns and consequences that occur, we plan to conduct a national survey with PwMS. The first step in this process is to conduct focus groups with PwMS to inform the development of this national survey.  

Objectives: N/A

Methods: Focus groups were conducted to explore the views and experiences of people with MS and care partners with regard to health, life, long-term care and disability insurances. Constant comparative analysis was used to identify themes within the narratives.

Results: Thirty-six people with MS and 24 partners participated in 8 focus groups conducted at 4 National MS Society chapters in geographically distinct regions. Of those with MS, 75% are female and 81% are White, with a mean age of 53 years; 50% are employed and 55% have disability income insurance. Three-quarters of care partners are spouses, 96% are White, 50% are female and their mean age is 60. Three themes related to disability income insurance emerged that are broadly grouped as burden, subtle symptoms, and applications denial. Participants perceive the initial application and appeals processes as burdensome and stressful in terms of effort, uncertainty of outcome, and duration. Some disabilities resulting from MS are not always readily apparent (e.g., fatigue and cognitive impairment) and may be difficult to demonstrate to prove eligibility even though they impact job attendance and performance.  Furthermore, participants perceive that most initial applications are denied and that the manner in which applications are completed is of utmost importance in determining eligibility decisions. Thus, they recommend that applicants seek legal assistance to increase the likelihood of approval yet recognize that cost may be a barrier to accessing legal services.

Conclusions: These data will help assure that the insurance survey we conduct will address matters important to PwMS and their families.