Healthy Tomorrows Partnership for Children Program - Autism Spectrum Disorder (ASD) is an increasingly prevalent condition affecting an estimated 1 in 36 children in the United States. It is important for children diagnosed with ASD to receive a diagnosis promptly as well as early and intensive services to achieve the best short- and long-term developmental outcomes. Currently, fewer than half of children with ASD are evaluated before age 3, and the average age of diagnosis is over 4 years of age. The American Academy of Pediatrics recommends that primary care providers (PCPs) screen for ASD at the 18 and 24 month well child visits, and PCPs are usually the first to detect symptoms and refer children for evaluation. Yet universal screening can be logistically difficult to accomplish in the busy primary care setting, and referred children often have to wait over a year for evaluation. Furthermore, given the shortage of specialists to provide ongoing care and services for autistic youth, many patients do not have regular follow-up with a specialist and do not receive ASD therapies. PCPs are increasingly being called on to manage all aspects of care for autistic youth, but face knowledge, time and resource limitations to providing that care. Families also face multiple barriers and delays when trying to connect with the complex network of recommended services. In addition, children with ASD often have trouble accessing preventive healthcare and are less likely to receive coordinated, family-centered care consistent with the Patient-Centered Medical Home (PCMH) model. Given the growing prevalence of ASD and the shortage of specialists and community services, as well as the continuity of care provided through the PCMH, there is a need to increase capacity within the PCMH to provide a continuum of autism care. This Autism Care Integration in the Patient-Centered Medical Home project is designed to integrate all aspects of ASD care into the PCMH. We propose creating an Autism Care Integration model within Boston Children’s Hospital Primary Care, which consist of three large pediatric clinics in the Boston area. Together the clinics serve 24,000 patients with 68,000 visits per year, including 1,600 patients with ASD. The majority of patients are Hispanic/Latino or Black and have public insurance, with 23% requiring an interpreter for medical visits. We believe that by more fully integrating ASD care into the PCMH, we can improve identification of ASD and increase access to services as well as the quality of care provided to patients. This multifaceted project includes the following goals: 1) To increase ASD screening rates at the 18 and 24 month well child visits as recommended by Bright Futures, as well as appropriate referrals for positive screens; 2) To create an internal autism diagnosis program staffed by trained general pediatricians; 3) To implement a behavioral support and training program for families while they await services in the community, including individualized consultation and topic-based workshops; and 4) To develop and test an online ASD curriculum for primary care providers and other staff. We will continue activities already ongoing in our primary care clinics including maintaining a registry of patients with ASD, utilizing an Autism Care Navigator to help families with care coordination, and ensuring patients with ASD are up-to-date on well child care. We believe that by providing a full continuum of care for patients with ASD within the PCMH, we will be able to mitigate barriers and ultimately help children be diagnosed earlier and access services more quickly.
