Care Coordination in Primary Care
- 20 Downloads
Families embarking on the journey of ASD evaluation and treatment face a complex road ahead, and the Primary Care Clinician (PCC) can play a key role in navigating that journey successfully in the context of the medical home. Given the high frequency at which children visit their PCCs in early childhood, PCCs participate in early identification through developmental surveillance and screening and provide referrals for children who require further evaluation. Throughout childhood, PCCs facilitate crucial linkages to community resources and specialty providers while also providing routine preventive care to children with Autism Spectrum Disorder (ASD). To varying degrees, PCCs provide direct care for co-occurring medical or mental conditions and assist families in securing treatment services. To execute this role effectively, modifications to the medical home may be necessary. This chapter provides an overview of the knowledge, processes, and skills necessary to provide comprehensive care coordination for children with ASD in the medical home setting.
KeywordsPediatrics Autism spectrum disorder Neurodevelopmental Autism Management Treatment Interdisciplinary Primary care Medical home
- Agency for Healthcare Research and Quality. (2018, August). Care coordination. Retrieved from http://www.ahrq.gov/ncepcr/care/coordination.html.
- American Academy of Pediatrics, Council on Children with Disabilities. (2005). Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs. Pediatrics, 116, 1238–1244.Google Scholar
- American Academy of Pediatrics Publications Reaffirmed and Retired. (February and May, 2008). Pediatrics, 122, 450.Google Scholar
- Applied Behavior Analysis: A Parent’s Guide (2018). Autism Speaks Autism Treatment Network, Autism Intervention Research Network on Physical Health. Retrieved from https://www.autismspeaks.org/sites/default/files/2018-08/Applied%20Behavior%20Analysis%20Guide.pdf.
- Baio, J. (2008). Centers for Disease Control & Prevention. Prevalence of autism spectrum disorders- autism, & developmental disabilities monitoring network, 14 sites, United States. Morbidity and Mortality Weekly Report, Surveillance Summaries, 61.Google Scholar
- Centers for Disease Control and Prevention. (2019, September 23). Autism spectrum disorder (ASD), treatment for autism spectrum disorder. Retrieved from https://www.cdc.gov/ncbddd/autism/treatment.html.
- Committee on Children with Disabilities. (2001a). American Academy of Pediatrics: The pediatrician’s role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107, 1221–1226.Google Scholar
- Committee on Children with Disabilities. (2001b). American Academy of Pediatrics: Developmental surveillance and screening of infants and young children. Pediatrics, 108, 192–196.Google Scholar
- Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., … Silverstein, M. (2016). Reducing disparities in timely autism diagnosis through family navigation: results from a randomized pilot trial. Psychiatric Services, 67, 912–915.Google Scholar
- Glascoe, F. P. (2018). PEDStest. Retrieved from https://pedstest.com.
- Greenspan, S. I., & Wieder, S. (1999) The developmental individual-difference, relationship-based (DIR/Floortime) model approach to autism spectrum disorders. In E. Hollander & E. Anagnostou (Eds.), Clinical manual for the treatment of autism (pp. 179–209). American Psychiatric Publishing, Inc.Google Scholar
- Hagan, J., Shaw, J. S., & Duncan, P. M. (Eds.). (2017). Bright futures: Guidelines for health supervision of infants, children, and adolescents (4th ed.). American Academy of Pediatrics.Google Scholar
- Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. L. (2012). Autism Diagnostic Schedule, Second Edition (ADOS-2), Western Psychological Services.Google Scholar
- Marks, K. P., & LaRosa, A. C. (2012). Understanding developmental-behavioral screening measures. Pediatrics in Review, 33, 448–457; quiz 457–458.Google Scholar
- McGuire, K., Fung, L. K., Hagopian, L., Vasa, R. A., Mahajan, R., Bernal, P., … Whitaker, A. H. (2016). Irritability and problem behavior in autism spectrum disorder: A practice pathway for pediatric primary care. Pediatrics, 137(Supplement 2), S136–S148.Google Scholar
- Mesibov, G. B. S. V., & Shopler, E. (2004). The TEACCH approach to autism spectrum disorders (issues in clinical child psychology). USA: Plenum Publish Corporation.Google Scholar
- National Institute for Children’s Health Quality. Creating a patient and family advisory council: A toolkit for pediatric practices. Retrieved from https://www.nichq.org/sites/default/files/resource-file/PFAC%20Toolkit.pdf.
- Ning, M., Daniels, J., Schwartz, J., Dunlap, K., Washington, P., Kalantarian, H., … Wall, D. P. (2019). Identification and quantification of gaps in access to autism resources in the United States: An infodemiological study. Journal of Medical Internet Research, 21, e13094.Google Scholar
- Perrin, E. C., Sheldrick, C., Visco, Z., & Mattern, K. (2016). The survey of well-being of young children (SWYC) user’s manual. Floating Hospital for Children at Tufts Medical Center. Retrieved from www.floatinghospital.org/The-Survey-of-Wellbeing-of-Young-Children.
- Robins, D. L. (2019). M-CHAT. Retrieved from mchatscreen.com.
- Sheldrick, R. C., Henson, B. S., Merchant., S., Neger, E. N., Murphy, J. M., & Perrin, E. C. (2012a). The preschool pediatric symptom checklist (PPSC): Development and initial validated of a new social-emotional screening instrument. Academic Pediatrics, 12, 456–467.Google Scholar
- Souders, M. C., Zavodny, S., Eriksen, W., Sinko, R., Connell, J., Kerns., C., … Pinto-Martin, J. (2017). Sleep in children with autism spectrum disorder. Current Psychiatry Reports, 19, 34.Google Scholar
- Squires, J., & Bricker, D. (2009). Ages and stages questionnaire®, third edition (ASQ®-3). Paul H. Brookes Publishing, LLC. Retrieved from https://agesandstages.com.
- Squires, J., Bricker, D., & Twombly, E. (2015). Ages and stages questionnaires, social-emotional, second edition (ASQ:SE-2). Paul H. Brookes Publishing, LLC. Retrieved from https://agesandstages.com/products-pricing/asqse-2/.
- U.S. Department of Education. (1974). Family Educational Rights and Privacy Act (FERPA) 34 CFR § 99.31. Retrieved from https://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html.
- U.S. Department of Education. (1990). Individuals with Disabilities Education Act (IDEA). Retrieved from https://sites.ed.gov/idea/.
- U.S. Department of Education, Department Office of Special Education and Rehabilitative Services. (2017). A transition guide to postsecondary education and employment for students and youth with disabilities. Retrieved from http://www2.ed.gov/about/offices/list/osers/transition/products/postsecondary-transition-guide-2017.pdf.
- U.S. Department of Health and Human Services Health Resources and Services Administration Bureau of Health Workforce and the National Center for Health Workforce Analysis. (2018). The US health workforce chartbook: Part IV: Behavioral and allied health.Google Scholar
- Van Cleave, J., Holifield, C., Neumeyer, A. M., Perrin, J. M., Powers, R., Van, L., & Kuhlthau, K. A. (2018). Expanding the capacity of primary care to treat co-morbidities in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48, 4222–4230.Google Scholar
- Vasa, R. A., Mazurek, M. O., Mahajan, R., Bennett, A. E., Bernal, M. P., Nozzolillo, A. A., … Coury, D. L. (2016). Assessment and treatment of anxiety in youth with autism spectrum disorders. Pediatrics, 137(Supplement 2), S115–S123.Google Scholar
- Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracker, J., State., M., & American Academy of Child and Adolescent Psychiatry Committee on Quality Issues. (2014). Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child Adolescent Psychiatry, 53, 237–257.Google Scholar
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.Google Scholar