The Complex Road to ASD Interventions: Parents’ and Providers’ Views of Barriers and Facilitators

Background: As a result of autism insurance mandates, health plans in many States are required to cover the cost of ASD behavioral health treatments (BHT). While there is a growing body of research evaluating the effectiveness of BHT, little is known about what helps or hinders participation in recommended BHT services.

Objectives: To identify factors that influence parent participation in and compliance with recommended BHT services for their child with ASD.

Methods: We conducted interviews (N=84) with parents and clinical providers of children with ASD referred for BHT by Kaiser Permanente. We used a non-probabilistic purposive sampling approach to capture the range of race/ethnic groups among patients (13 white, 10 Asian, 6 Hispanic, 3 African-American, 8 Other) and their experiences with BHT treatment (child never started (N=10), child started but discontinued (N=8), child currently receiving (N=22). The provider group included KP clinicians (16 pediatricians and psychologists, 11 case managers) and non-KP BHT providers (17 ABA interventionists and supervisors). Three interviewers trained in qualitative methods developed guides and conducted all interviews. Areas explored with parents included acceptability of care, attitudes and beliefs about autism, language and literacy, involvement in care, education/income, stigma, family functioning, and specific experiences with the treatment process. Questions to providers about their experiences with the services and with their patients completed the picture. Interviews, in person or by telephone, ranged from 30 minutes to 2 hours.

Results:  Many parents expressed confusion and difficulty navigating a complex system to access BHT. Obstacles to initiating or continuing BHT included financial burden, gaps in care coordination, deficient quality of care, and other effects of treatment such as the financial impact of the number of hours recommended, and the invasion of privacy resulting from in-home therapy. Immigrant families encountered additional obstacles including language, cultural, and literacy barriers, and lack of culturally competent support. Many KP providers echoed the parents’ frustration with the system, which they perceived as overloaded, unwieldy, lacking high quality interventionists, and too restrictive for case managers. From the point of view of BHT providers, barriers to families initiating and continuing BHT services include lack of capacity of BHT providers to keep up with the number of referred children, family difficulties with choosing or committing to a vendor, vendor difficulties establishing contact and scheduling visits with families, turnover in intervention teams, and the practice of assembling teams for each child, rather than having permanent, full time staff onboard. There is a shared perception among some parents and providers that business interests trump the care of individuals. Possible solutions suggested by parents, KP clinicians and BHT providers included improved education and training for parents and providers, active case management, improved care coordination, availability of translated materials, interpreters trained in ASD, culturally competent providers, and introduction of patient navigators.

Conclusions: The interviews provided insights about the experiences of an ethnically diverse group of ASD families referred to BHT services. Many barriers were experienced by both families and providers. Overcoming them is necessary in order to reap the benefits of BHT.