Early Intervention ASD Practices through Part C Systems: Results from a Nationwide Inquiry

Background: Part C of IDEA federally mandates that early intervention is provided to children under three years of age in order to enhance the development of infants and toddlers with disabilities, reduce educational costs, and enhance the capacity of families to meet their child’s needs (IDEA, 2004). Governors determine which state agency administers the program. These agencies, guided by the Interagency Coordinating Council, determine eligibility including whether children at risk for disabilities, including Autism Spectrum Disorder (ASD), are served. Early interventions for children with suspected or confirmed ASD should address core and associated features through evidence-based Naturalistic Developmental Behavioral Interventions (NDBIs; Schreibman et al., 2015) that actively involve caregivers (Zwaigenbaum et al., 2015). However, community agencies often do not have the accessibility to ASD specific interventions and thus families are not recipients of these practices (Hume et al., 2007; Stahmer et al., 2005; Siller et al., 2013).

Objectives: To evaluate Part C practices across all 50 states regarding management of children with ASD.

Methods: Agency administrators within the state agency that determines intervention eligibility were contacted via phone and/or email. They were asked three questions about treatment dose, whether a specific method(s) of intervention was recommended, and whether Applied Behavior Analysis was provided through Part C. They were also encouraged to provide additional comments, challenges, or state-specific issues regarding treatment provision for children with ASD. Responses were entered into a database so descriptives could be calculated and comments could be evaluated to detect themes.

Results: To date, agency administrators from 27 states have responded. Dose ranged from 30 minutes per week to 25 hours per week. Eleven states recommended a specific method. Reported recommended methods included ABA (4 states), Floortime (3 states), Pivotal Response Training (2 states), and the Early Start Denver Model (2 states). Two states did not recommend a particular method, however they did refer clients and providers to the evidence-based practices identified in the National Standards Project (NAC, 2015). Two broad themes emerged within open comments: Medicaid waiver and Individualized Family Service Plan (IFSP). State guidelines relative to Medicaid waiver often influenced whether a Part C program recommended ABA services or other supplemental interventions. Dose and method were frequently determined by the IFSP, as intended by law. Twelve state agencies indicated that they provide ABA services through Part C or refer families for ABA services through the Medicaid system.

Conclusions: Part C early intervention practices for children with ASD vary widely across the 27 states analyzed for the current proposal. However, the IFSP was consistently used to determine dose and method. Funding mechanisms, primarily Medicaid, was frequently referenced relative to supplemental (ABA) interventions. Two NDBIs (PRT and ESDM) were recommended by four of the 27 states (15%). These preliminary findings provide insight into community early intervention practices and highlight the research to practice gap highlighted by previous studies (Dingfelder & Mandell, 2011). These findings also provide researchers with a clear picture of real-world early intervention practices and highlight opportunity for community based research. Data collection is ongoing.