Caregiver-Reported Use of Autism-Related Services in the Dallas-Fort Worth Metroplex and Associated Satisfaction Ratings

Background:

The prevalence of Autism Spectrum Disorder (ASD) has risen rapidly to 1 in every 59 children. Being one of the fastest growing developmental disorders, the need for services outpaces availability for individuals with ASD. Texas is ranked 50^th (out of the 51 states included) in providing community-based services for people with developmental disabilities. In order to make community- and state-level policy recommendations to address this issue, it is important to understand the specific landscape of met and unmet needs of individuals with ASD. By identifying gaps in service availability and use of services, policymakers, healthcare providers, and community advocates will be better equipped to design programs that facilitate access to appropriate and timely interventions.

Objectives:

We aimed to identify patterns of service utilization among individuals with ASD and their families in the Dallas/Fort Worth (DFW) area, a large population center in northeast Texas. We predicted that service navigation and financial burden would be among the most difficult challenges caregivers faced.

Methods:

We conducted a cross-sectional study to assess the services used by individuals with ASD in the DFW area, and satisfaction with these services. We created the Autism Service Utilization and Satisfaction survey by combining new items with adaptations of two existing instruments, the Pathways in ASD and the Community Services Outcomes for Families and Children with ASD. The survey was delivered to caregivers of individuals with ASD and adult self-advocates with ASD using REDCap, an online secure project management service. The survey captured family demographics, services utilized (e.g., type, setting), and associated satisfaction. Preliminary analysis included 26 caregiver respondents; demographics are presented in Table 1.

Results:

Preliminary qualitative analysis revealed several notable trends in caregivers’ self-reports of the most challenging issues they faced after a diagnosis was made. Caregivers reported difficulty navigating services: 47% struggled to find the appropriate services for their child, 29% did not know where to start, and 24% had difficulty scheduling and maintaining appointments with providers. Overall, 29% reported that affording services and qualifying for help was one of their three most challenging issues. Additionally, 82% of caregivers affirmed that they identified a resource but could not pay for it, 67% were satisfied with the diagnostic services provided by their school district, and 71% were satisfied with education programs meeting the recipient’s behavioral and emotional needs. Finally, 88% either disagreed or were neutral about overall satisfaction with available services and providers.

Conclusions:

Preliminary examination of responses suggests that caregivers in the DFW area have difficulty navigating their child’s diagnosis and case management. Participants confirmed our hypothesis that they were satisfied with the diagnostic and educational services the school provided; however, they had trouble paying for the services and qualifying for help through insurance and other means. This further emphasizes the importance of identifying resources that families are using, and where the gaps lie in their access to these resources. Data collection is ongoing through partnership with clinics, schools, and community organizations in Dallas-Fort Worth.