Funded Projects

Problem:

Autism Spectrum Disorder (ASD) is an increasingly prevalent condition characterized by difficulties with social interactions, communication, and restricted, repetitive behaviors. It is critical for patients diagnosed with ASD to access services quickly, but families often face multiple barriers and delays when trying to connect with the complex network of recommended services. Children with ASD also have trouble accessing preventive healthcare, and are less likely to receive coordinated, family-centered care consistent with the Patient-Centered Medical Home (PCMH) model.

Goals and Objectives:

The intervention has 3 goals: (1) to connect children with ASD to essential services at the time of diagnosis and during key transition periods, while providing education and strategies to mitigate stress and increase caregiver agency; (2) to utilize population management methods to ensure patients with ASD receive appropriate preventive care; and (3) to create educational tools and conduct trainings across the primary care sites to facilitate connectivity between patients with ASD and their communities. Key outcome objectives include: increasing service connectivity for patients with ASD, decreasing caregiver stress, increasing caregiver knowledge and agency, and providing 95% of patients with an ASD diagnosis with annual well child care.

Methodology:

We propose to develop, implement and evaluate an Autism Care Navigator (ACN) model within the PCMH. The intervention will take place at the Boston Children's Hospital Primary Care Practices, and the target population includes approximately 1,000 primary care patients with ASD. The majority of patients are Hispanic/Latino or Black and have public insurance, with 23% requiring an interpreter for medical visits. The ACN will meet with children with a new diagnosis of ASD and prior to key transition periods when children are at risk of losing access to services. The ACN will make direct referrals and provide education and support. We will also track well-child visits to ensure all children with ASD in the PCMH are receiving Bright Futures recommended preventive care. We intend to create a model of care and a toolkit of resources that can be reproduced by other pediatric practices.

Coordination:

We have formed a Project Advisory Board as well as partnerships with local community organizations, government agencies, pediatric networks, and a parent partner to help us develop and refine the intervention and resources. These partners will help us develop a culturally and linguistically sensitive care model, resources, and educational sessions that can be widely disseminated.

Evaluation:

We have developed a number of outcome and process measures in alignment with our 3 goals. Data will be collected through a combination of surveys, focus groups, and Electronic Medical Record data to help us understand the efficacy of the intervention. We will review the data at regular intervals to refine both the intervention and the measures as we continue to reassess our program and methods.