CPJXXX10.1177/0009922818774344Clinical PediatricsShahidullah et al 774344research-article2018 Commentary Clinical Pediatrics 2018, Vol. 57(13) 1496 –1505 Linking the Medical and Educational © The Author(s) 2018 Article reuse guidelines: sagepub.com/journals-permissions Home to Support Children With DOI:https://doi.org/10.1177/0009922818774344 10.1177/0009922818774344 Autism Spectrum Disorder: Practice journals.sagepub.com/home/cpj Recommendations Jeffrey D. Shahidullah, PhD1 , Gazi Azad, PhD2, Katherine R. Mezher, PhD3, Maryellen Brunson McClain, PhD4, and Laura Lee McIntyre, PhD5 Abstract Children with autism spectrum disorder (ASD) present with complex medical problems that are often exacerbated by a range of other intellectual and psychiatric comorbidities. These children receive care for their physical and mental health from a range of providers within numerous child-serving systems, including their primary care clinic, school, and the home and community. Given the longitudinal nature in which care is provided for this chronic disorder, it is particularly necessary for services and providers to coordinate their care to ensure optimal efficiency and effectiveness. There are 2 primary venues that serve as a “home” for coordination of service provision for children with ASD and their families—the “medical home” and the “educational home.” Unfortunately, these venues often function independently from the other. Furthermore, there are limited guidelines demonstrating methods through which pediatricians and other primary care providers (PCPs) can coordinate care with schools and school- based providers. The purpose of this article is 2-fold: (1) we highlight the provision of evidence-based care within the medical home and educational home and (2) we offer practice recommendations for PCPs in integrating these systems to optimally address the complex medical, intellectual, and psychiatric symptomology affected by autism. Keywords autism spectrum disorder, primary care, medical home, pediatrics, interprofessional collaboration Introduction Integrated care is particularly important for children with special health care needs. The Maternal and Child Integrated Care Movement Health Bureau describes children with special health care The integrated care movement is centered on making needs as being at “increased risk for chronic physical, health care more accessible and effective. Although the developmental, behavioral or emotional conditions and notion of integrated care is not new, the concept of a who also require health and related services of a type or 3(p138) model that coordinates physical and behavioral health amount beyond that required by children generally” services and providers within a unified delivery system These children typically require longitudinal care within a was more recently reemphasized via the Patient- chronic care model (CCM) that recognizes that these con- Centered Medical Home (PCMH) model in the Patient ditions are lifelong disorders involving profound Protection and Affordable Care Act.1 Unfortunately, impairments that permeate a multitude of settings and there is an inadequate standard of care for a number of 1Rutgers University, New Brunswick, NJ, USA and Rutgers Robert chronic health conditions, including developmental and Wood Johnson Medical School, New Brunswick, NJ, USA behavioral disorders. More specifically, physical and 2Johns Hopkins University, Baltimore, MD, USA and Kennedy behavioral health systems are largely silos of care, char- Krieger Institute, Baltimore, MD, USA 3Miami University, Oxford, OH, USA acterized by separate and distinct settings, providers, 4 and care management approaches. These fragmented Utah State University, Logan, UT, USA 5University of Oregon, Eugene, OR, USA systems lead to diminished quality of care as a result of inefficiencies, lack of communication, duplication and Corresponding Author: Jeffrey D. Shahidullah, Rutgers The State University of New Jersey, 152 gaps in services, and patients feeling overwhelmed and Freylinghuysen Rd, GSAPP, Office A353, Piscataway, NJ 08854, USA. 2 marginalized in their care. Email: [email protected] Shahidullah et al 1497 systems. Relevant child-serving systems for children with Practice Guidelines special health care needs include the home, community, primary care clinic, and school. According to the American Academy of Child and Although the emphasis on integrated care has focused Adolescent Psychiatry (AACAP), the multiple develop- on coordinating physical and behavioral health services mental and behavioral challenges associated with ASD and providers within the medical home, the child’s necessitate comprehensive services. The AACAP prac- school system (ie, “educational home”) often functions tice parameters suggest the use of an interdisciplinary assessment and treatment approach and the coordination separately from this system of care. The educational 6,9 home is where children spend roughly 40 hours a week of care within and across those services. The coordi- in a performance-based environment where social, nation of services is particularly imperative as individu- behavioral, cognitive, and academic challenges are most als reach milestone transitions, such as the transition likely to present. Furthermore, this is a setting that posi- from early childhood to school age or the transition from tions a multidisciplinary team of school-based providers adolescence to adulthood. Transitions are often associ- to support children with special health care needs on a ated with a transfer of services from one system of care to another and, therefore, particularly prone to miscom- daily basis over the span of years. Despite the scope of 10 services offered in the school setting, research shows munication. Although the AACAP guidelines for ASD that this care is not coordinated with the medical home allude to an integrated approach, by using words such as and that pediatricians have little interface with, and “comprehensive,” “collaborative,” and “interdisciplin- knowledge of, school support services such as special ary,” there is no mention of a specific integrated care education programming.4 The current fragmented func- model or approach to care coordination (note: the term tioning of the medical and educational homes will con- integrated care in this article is used to broadly refer to tinue to foster ineffective care as a result of the numerous coordination of care across settings and providers to per- identified systems inefficiencies.2 mit integration of services that is centered on compre- hensive needs of the patient/family). Primary care providers (PCPs) are ideally suited to Autism Spectrum Disorder facilitate integrated care for children with ASD. Given Children with special health care needs, such as autism that the American Academy of Pediatrics (AAP) recom- spectrum disorder (ASD) are in need of integrated health mends ASD screening at the 18- and 24- month well-child care services. In the Diagnostic and Statistical Manual of visit, PCPs are often the first point of contact when par- ents have concerns about their child’s development or Disorders, Fifth Edition (DSM-5), ASD is described as a 11,12 neurodevelopmental disorder characterized by persistent behavior. With a valid screening and subsequent diag- deficits in social communication and social interaction nosis, parents are often faced with a multitude of treat- ment options, given the 27 intervention practices that across multiple contexts as well as restricted, repetitive 13 patterns of behavior, interests, or activities. These symp- meet criteria for an “evidence-based practice” in ASD. toms must be present in the early developmental period Therefore, it is not surprising that families experience sig- nificant challenges to timely identification, diagnosis, and but may not fully manifest until social demands exceed 14 capacities. The complex symptoms related to ASD cause management of their children’s needs. Children with ASD typically do not receive coordinated services. For significant impairments in daily living, including social, 15 occupational, and other important areas of current func- example, Farmer et al asked 371 parents of children 5 with ASD to complete the Access to Care Questionnaire. tioning. The diagnostic criteria for ASD elucidate the Less than one-third (29.9%) of the children received coor- need for a variety of services across the medical and edu- dinated care. More than half of the children (63%) had cational home to address the multitude of needs in this unmet needs, with the highest unmet need for behavioral pervasive and chronic disorder. Given that ASD falls on therapy. Furthermore, the challenges associated with inte- a spectrum, children with this complex disorder present grated care are exacerbated for underserved communities, with a wide range of symptoms.6 Often, these children such as those living in rural areas and/or those from racial also are diagnosed with comorbid conditions related to 14 and ethnic minority groups. their physical (eg, immunology, gastroenterology, and neurology), mental (eg, attention-deficit/hyperactivity disorder [ADHD], anxiety, and depression), and cogni- Systems of Care tive (eg, intellectual disability) functioning.7,8 The multi- faceted nature of ASD speaks to the need for involvement Medical Home from providers from multiple disciplines to be involved The PCMH model was developed from the CCM frame- in a child’s care. work with the goal of improving care for chronic health 1498 Clinical