Examining Part C Early Intervention Services for Families with Children at Risk- or with Autism Spectrum Disorder

Background:  As the rates of Autism Spectrum Disorder (ASD) continue to increase and ASD pediatric screening efforts intensify, more infants and toddlers are entering the Part C system (e.g., Corsello, Akshoomoff, & Stahmer, 2012). Part C service delivery to toddlers with ASD varies greatly across states, rural/urban settings and family resources (Stahmer & Mandell, 2006). Research recommends receiving 20 or more hours per week of specialized evidence-based intervention for young children with ASD to achieve optimal outcomes—reducing intellectual impairment, improving social communication/skills and language development— (e.g., Dawson et al., 2010, Lord and McGee, 2001). However, Part C providers tend to use general developmental guidance which is not effective for ASD (Ingersoll et al., 2012). It is assumed that evidence-based practices are not the norm, and are especially difficult to access in low resourced areas. To improve community services to under resourced children with ASD, a better understanding of the current Part C system service delivery is needed.

Objectives:  To obtain a comprehensive understanding of the early intervention delivery system for children with or at-risk for ASD at multiple levels of the Part C delivery system, across states and family income level.

Methods:  Participants include 5 state Part C coordinators, that nominated 10 agency administrators serving mainly low resource areas, who nominated 20 early intervention providers within those agencies, that finally nominated 32 caregivers of children with or at-risk for ASD. A semi-structured on-line survey was conducted at these multiple levels. Descriptive and contingency analyses were conducted to explore the objective of the study.

Results:  Lower income families report receiving one-third of the intensity of higher income families, with less access to specialized treatments. Despite this, lower income families report higher rates of satisfaction. Agency Administrator’s and Provider’s reports of service intensity are consistent with the caregiver’s reports, while Part C coordinators overestimated the service intensity and quality provided to lower resources areas. Both Part C coordinators and Agency Administrator showed very little training in ASD. The home setting was consistent among the 3 administrative levels to be the principal delivery setting. In general, there were neither specific methods used for early intervention in ASD nor for parent training. These results highly vary among states.

Conclusions:  Results suggest that special efforts are needed to increase evidence-based ASD training for Part C providers serving low income families and low resource areas to improve care for this population. Results also showed the need of stronger advocacy for lower income families, both in service quality and intensity needed. Data will be used to adapt an evidence-based practice that has previously shown efficacy in a randomized clinical trial. The adaptation will target the needs of rural and low resourced areas and will fit within the frame of the current Part C delivery system.