Caregiver Perceptions of Insurance Coverage As Both a Barrier and Facilitator to ASD Resources

Background: The impact of healthcare coverage on access to autism-specific services and health related quality of life factors (HRQOL, WHOQOL-BREF) is largely unknown. Until recently, health insurance plans typically did not cover autism-specific treatment (Bouder, 2009 and Baller, 2015). Increased instability of healthcare coverage has reached a new high with the implementation of the Affordable Healthcare Act and its possible repeal, in addition to concerns around state-specific Medicaid funding. Many families are faced with difficult decisions and/or few options for healthcare. Autism insurance mandates have been implemented in 43 states and previous analyses suggest that the first few years of the mandate often result in low rates of utilization (Mandell 2016) largely due to system and services delivery challenges (Baller, 2016).

Objectives: This study aimed to 1) examine the relationship of insurance changes on HRQOL factors, and 2) explore caregiver’s perceptions of the healthcare coverage changes in a state with an autism insurance mandate effective in the past year.

Methods: A mixed-methods approach was used beginning with a quantitative survey assessing HRQOL and insurance changes. The survey was disseminated online to parents of youth who were part of research registry through UNC Chapel Hill. 365 caregivers completed the survey. In order to determine whether insurance variables significantly predicted HRQOL subscales (physical, psychological, social and environmental), a linear regression was conducted. Insurance variables hypothesized to predict HRQOL included the following: (1) changes in health insurance in the past two years, 2) perceived quality of change and 3) perceived quality of current insurance. For the qualitative component, 8 participants were interviewed. Qualitative interview questions were created to examine the relationship parents see between HRQOL and their own daily experiences; explore barriers and facilitators towards seeking out services, resources, or support; and elicit parental responses to potential mechanisms of disseminating support and various types of supportive providers. Theoretical thematic analysis was used to help describe transcript data. NVivo-11, a qualitative analysis software package, was used in the thematic analysis process for organization of codes and creation of themes. The current study focused on the theme “Resources.”

Results: First, a linear regression was conducted to examine whether a change in insurance predicted HRQOL subscales. Caregivers who reported changes in insurance coverage scored lower on overall psychological well-being (β =-.187, p =.025). Further, caregivers who rated the quality of their current coverage lower also reported poorer environmental conditions (β = 269, p =.000) and physical health (β = -.146, p = .05). Second, qualitative analyses examining the resource theme further explained caregiver’s concerns around insurance change (see Table 1): caregivers expressed concerns around loss of insurance coverage or loss of state Medicaid funding, the rising cost of services and challenges with traveling to providers who would accept their insurance.

Conclusions: Caregivers are voicing concerns around the instability of healthcare coverage, which is impacting their psychological and physical health as well as environmental quality of life. Further studies should examine potential supports for caregivers as they navigate healthcare coverage.