Description and Outcomes of a Parent Education Package in the Context of a Comprehensive Applied Behavior Analysis Early Intervention Program

Background:  Young children with autism spectrum disorder (ASD) receive recommendations for a range of services, accessed through different service systems (e.g., insurance, schools). For parents, availability of education about how to obtain services is inconsistent. Following diagnosis, Applied Behavior Analysis (ABA) therapy is often recommended. In Washington State, wait times for ABA may exceed 1-2 years, often because families lack knowledge of how to navigate the service system. In effort to provide comprehensive early intervention services, and to potentially reduce wait times for ABA therapy, the ABA Early Intervention (ABA EI) Program at Seattle Children’s Autism Center is a short-term (3 months), comprehensive, intensive treatment model that includes a parent education/support package. As part of this package, parents are taught how to access services, including accessing longer-term ABA therapy through insurance.

Objectives:  The objective of this study is to highlight the parent education/support package included in the ABA EI Program, and to explore its effects on access to care following discharge, parent satisfaction, and parent stress and empowerment from baseline to post-treatment. Access to care findings for ABA EI patients are compared to a population of children with ASD served in an outpatient clinic in order to compare how many children accessed ABA therapy across groups.

Methods: Participants thus far include 43 children diagnosed with ASD, ages 18 months-9 years, and their parents. Children were selected from two groups: ABA EI Program participants (N = 23) or general outpatients (N = 20). To compare access to care across groups, an independent chart review was completed to determine if patients with referrals for ABA therapy were receiving it. Percent of children receiving ABA in each group was then calculated as the primary outcome measure. Additional secondary measures are being completed to evaluate changes in parent stress and empowerment from baseline to post-treatment (Parenting Stress Index; PSI; Abidin, 1995 and Family Empowerment Scale; FES; Koren, DeChillo & Friesen, 1992). The ABA EI Parent Satisfaction Survey is also being collected at post-treatment.

Results: Data collection is ongoing. Results from the primary outcome measure indicate that 61% (N = 23) of children in the ABA EI program successfully accessed ongoing ABA therapy, compared to 15% (N = 20) of outpatients. The mean ABA EI Satisfaction Survey score (N = 8) was 5 (SD = 0) on a scale of 1-5 (1 = unsatisfactory; 5 = very satisfactory). Results from other secondary measures (PSI and FES) have not yet been analyzed, as data collection is ongoing. Projected enrollment prior to presentation of results is 20-30 children.

Conclusions: Families receiving an intensive parent training/support package in the context of a brief early intervention program successfully accessed ongoing ABA therapy services at a much higher rate than children receiving less intensive outpatient services. Parents reported high satisfaction with the ABA EI program. These pilot findings suggest a focus on increased family support may be important for insuring families are able to navigate the complex service systems involved in caring for children with ASD.