Legislative: Transitioning the Older Adolescent Living with Autism Spectrum Disorder to Adult Primary Medical Home: A Call for Nursing Action.

Abstract

Autism Spectrum Disorder (ASD) is a neurodevelopmental, chronic illness characterized by abnormal or impaired development in social interaction and communication, and a restricted repertoire of activity and interests (American Psychiatric Association. 20001. The Centers for Disease Control and Prevention (20141 has estimated that 1 in 68 United States (U.S.) children have been diagnosed with ASD by the age of three; schoolaged boys comprise 1 in 42 of the children diagnosed with ASD. ASD is the fastest growing developmental disability (Autism Speaks. 2011: Centers of Disease Control and Prevention. 20141. Children and adolescents living with ASD may need care from both primary healthcare providers and medical specialists, as well as behavioral health, social, educational, and vocational services.Furthermore, children living with ASD are more frequently diagnosed with other developmental, psychiatric, neurologic, or medical co-occurring chronic illnesses than are children without an ASD diagnosis (Levy et al.. 20101. Analyzing Medicaid insurance claims of ASD children in eight states in the US through ICD-9-CM codes for ASD, Peacock, Amendah, Ouyang, and G rosse (20121 reported that 53% of the ASD children were commonly diagnosed with attention deficit/hyperactivity disorder, seizures, or intellectual disabilities and that the financial cost of managing these illnesses in ASD children was six times greater than for children with nonASD diagnosis. Peacock et al. (20121 also noted significant differences in the cost of outpatient services, medication, and inpatient services between children with ASD and children with non-ASD diagnoses.Due to the needs and complexities of children and adolescents living with ASD, care coordination by a primary care provider within a medical home model is strongly encouraged. Previous researchers have documented the benefits of access to a medical home for children and adolescents, especially if a special health need is present (Strickland et al.. 20041. Healthy People 2020 (U.S. Department of Health and Human Services, 20121 (MICH-30 and MICH-31) established a goal to increase access to medical homes for children with special healthcare needs (CSHCN) to ensure that every child's preventative and special healthcare needs are met without any gaps in care. A medical home, or patient-centered healthcare home, provides coordination of care with a primary healthcare provider who is able to offer a seamless transfer of pediatric-specific primary care into adulthood. Yet children and adolescents with ASD more often lack a medical home compared to children with other special needs, especially during their transition into adult, primary healthcare (Golnik. Ireland. & Borowskv, 20091.Resources for transitioning older adolescents and young adults living with ASD into any adult social or health services decrease dramatically after age 22 (Gerhardt. 20091. During this transitional period, gaps in healthcare services are likely to occur when an adult primary medical home is unavailable. Transitional medical homes are needed. Unfortunately, nursing does not have a significant presence in transitional medical homes. Reasons for the lack of nursing presence during this transition include the lack of knowledge about both ASD and the concept of transition from adolescent to adult healthcare services (Osterkamp. Costanzo. Ehrhardt. & Grom lev. 20131. We recommend the following approaches to promote effective transition from adolescent to adult services for people living with ASD: (a) development of an advanced practice nursing role to facilitate healthcare transitions, (b) education of all adult primary healthcare providers regarding ASD, and (c) legislative advocacy to educate elected officials about healthcare issues of people living with ASD and the need to support the continuation of the Combating Autism Reauthorization Act of 2011 so as to strategically plan the needs of people living with ASD. …