Understanding Health Care Disparities Among Families of Children with ASD: The Role of Advocacy, Empowerment, and Parent-Professional Relationships

Background: Children with ASD have complex service needs due to a unique combination of core symptoms and comorbid conditions that affect child and family functioning. Consequently, these families utilize a greater number of services than families of children with other special healthcare needs. However, they also report more unmet service needs and less satisfaction with the services they receive. These disparities are even more pronounced in low-SES families. This may be due in part to the factors that support access to services, such as parental advocacy, parent empowerment, and parent-professional partnerships, which may differ across high and low SES families. 

Objectives: This analysis will address two questions: 1) what might explain differences in service adequacy based on family SES; and 2) who is likely to advocate for services if their needs are not met.

Methods: Parents of children with ASD (n=248; M=9.9 years old) completed a 30-minute anonymous survey. The survey included a demographics questionnaire, services inventory, Autism Behavior Checklist, Family Empowerment Scale, Family-Professional Partnership Scale, and an advocacy questionnaire designed for this study. Recruitment utilized both online and in-person data collection strategies in an effort to maximize the diversity of the sample. Parent education (college degree vs. no college degree) was used as a proxy for SES.

Results: An independent samples t-test demonstrated that higher SES families (M=.48, SD=.29) were more likely to perceive their services as adequate than lower SES families (M=.35, SD=.22), t(246)=-3.70, p<.001. Parent empowerment, parent-professional partnerships, and parent advocacy were examined as potential mediators of this relationship. Controlling for child’s age and level of severity, parent-professional partnership was a significant mediator of the effect between SES and service adequacy (Sobel test: z=2.81, se=.017, p<.005).

To examine potential predictors of parent advocacy, multiple regression was used. Child severity (β=-.157; p=.018), service adequacy (β=-.170; p=.017), and parent empowerment (β=.229; p=.001) were each independent predictors of parent advocacy. Controlling for child severity, a moderated regression found that service adequacy and parent empowerment interacted to predict parent advocacy, (ΔR²=.013, FΔ(1,243)=3.706, p=.055), such that parents who experienced a low level of service adequacy and high level of parent empowerment were most likely to advocate for their child.

Conclusions: As families have a finite amount of time, energy, and resources, it is important to understand how they can most effectively navigate the service system. Results suggest that parent-professional partnerships may be an important factor that explains some of the disparities in service adequacy for lower-SES families. Additionally, for those families who do not receive adequate services, empowerment may be an important component in making the decision to advocate. Strategies aimed at reducing disparities in service adequacy for lower-SES families of children with ASD should consider methods for improving parent-professional partnerships and increasing parent empowerment. It will be important to expand the study in order to determine if the trending results reach significance in a more diverse sample.