State-Level Autism Policies and Their Impact on Families’ Access to Early Intensive Behavioral Interventions

Background: There is increasing evidence of the effectiveness of early intensive behavioral interventions (EIBI) to impact core autism symptoms. However, few young children have access to or engage in the recommended 20 hours of intervention. State-level policies affect access to EIBI by informing guidelines on who can provide an autism diagnosis, shaping workforce development policies for specialty service providers, and impacting insurance coverage and reimbursement for services. Yet, few studies have examined policy-responsive barriers to such services, instead focusing primarily on individual or systems-level barriers. Project EARLY is a multi-site comparative effectiveness trial of a strategy to improve early identification and linkage to services among ethnically diverse, low-income families of children at risk for autism. The trial takes place in Massachusetts, Connecticut, and Pennsylvania, and provides an opportunity to study state-specific policies and practices that may impact families’ engagement with and access to EIBI.

Objectives: To identify the potential state-level policy levers that can address disparities in access to and engagement in EIBIs for children with autism.

Methods: We conducted semi-structured qualitative interviews with stakeholders in Massachusetts (n=8), Connecticut (n=1), and Pennsylvania (n=2), that included policy experts, service coordinators, and Part C Early Intervention directors. Interview questions were guided by the Consolidated Framework for Implementation Research (CFIR). Interviews were audio-recorded, transcribed, and double-coded. They were analyzed via thematic and content analyses and mapped on to CFIR domains. Data collection for Pennsylvania and Connecticut is ongoing. We project a total of 15 interviews at the end of this study. We will utilize triangulation and member-checking to assess new policy-levers identified in upcoming stakeholder interviews to assess their generalizability and applicability to different state policy environments.

Results: Preliminary results from Massachusetts stakeholder interviews identified several policy-sensitive barriers that low income, ethnically diverse families experiencing when accessing EIBIs: 1) a shortage of certified providers who can provide behavioral interventions; 2) delays in obtaining diagnostic assessments, a prerequisite to obtaining EIBI in Massachusetts; and 3) cultural and linguistic barriers among EIBI providers. Massachusetts stakeholders expressed interest in understanding state policies and regulations that a) support the provision of more integrated early childhood services – e.g. Pennsylvania, which integrates Part C and B services for children birth through age 5 and b) decrease barriers to diagnostic assessment - e.g. Connecticut, which offers diagnostic assessment through Part C programs. These findings map onto the CFIR domains of engaging, tension for change, and external policy and incentives.

Conclusions: Preliminary findings identified potential policy levers to address disparities in access to and engagement in EIBI. Findings from Massachusetts will inform areas of further exploration with Connecticut and Pennsylvania stakeholders regarding state policies regulating certification of providers, provision of diagnostic services, and workforce development. As demand and funding for EIBI expands, states are faced with the challenge of meeting the increased service needs. Using an implementation science framework – CFIR - as a scaffolding to understand the role of state-level policies to increase access and provision of EIBI will support dissemination of findings to state policy makers and advocates.