“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
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.