The relationship between the medical home and unmet needs for children with autism spectrum disorders

Maternal and Child Health Journal

Volumn 18, Issue 3, 2014, Pages 672-680

  Farmer, Janet E ^a   Clark, Mary J ^b   Mayfield, Wayne A ^b   Cheak Zamora, Nancy ^a   Marvin, Alison R ^c   Law, J Kiely ^c,d   Law, Paul A ^c,d  

^a UNIVERSITY OF MISSOURI   (United States)

^b University of Missouri   (United States)

^c KENNEDY KRIEGER INSTITUTE   (United States)

^d JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

Autistic disorder; Delivery of health care; Health services; Medical home; Patient centered care

Indexed keywords

ADOLESCENT; AUTISM; CHILD; FEMALE; HEALTH CARE DELIVERY; HEALTH SERVICE; HUMAN; INFANT; MALE; PATIENT CARE; PRESCHOOL CHILD; QUESTIONNAIRE;

ADOLESCENT; CHILD; CHILD DEVELOPMENT DISORDERS, PERVASIVE; CHILD, PRESCHOOL; FEMALE; HEALTH SERVICES ACCESSIBILITY; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; INFANT; MALE; PATIENT-CENTERED CARE; QUESTIONNAIRES;

EID: 84896492411     PISSN: 10927875     EISSN: 15736628     Source Type: Journal    
DOI: 10.1007/s10995-013-1292-z     Document Type: Article

References (35)

1. Gurney, J. G.; McPheeters, M. L.; & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism. Archives of Pediatrics, 160, 825-830.
2. Bitterman, A.; Daley, T. C.; Misra, S.; Carlson, E.; & Markowitz, J. (2008). A national sample of preschoolers with autism spectrum disorders: Special education services and parent satisfaction. Journal of Autism and Developmental Disorders, 38(8), 1509-1517.
3. Croen, L. A.; Najjar, D. F.; Ray, G. T.; Lotspeich, L.; & Bernal, P. (2006). A comparison of health care utilization and costs of children with and without Autism Spectrum Disorders in a large group-model health plan. Pediatrics, 118(4), e1203-e1211.
4. McGrath, R. J.; Laflamme, D. J.; Schwartz, A. P.; Stransky, M.; & Moeschler, J. B. (2009). Access to genetic counseling for children with autism, Down syndrome, and intellectual disabilities. Pediatrics, 124(Suppl 4), S443-S449.
5. Brachlow, A. E.; Ness, K. K.; McPheeters, M. L.; & Gurney, J. G. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs. Archives of Pediatrics and Adolescent Medicine, 161, 399-404.
6. Sheldrick, R. C.; & Perrin, E. C. (2010). Medical home services for children with behavioral health conditions. Journal of Developmental and Behavioral Pediatrics, 31(2), 92-99.
7. Kogan, M. D.; Strickland, B. B.; Blumberg, S. J.; Singh, G. K.; Perrin, J. M.; & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005/2006. Pediatrics, 122, e1149-e1158.
8. Krauss, M. W.; Gulley, S.; Sciegaj, M.; & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41(5), 329-339.
9. Ruble, L. A.; Heflinger, C. A.; Renfrew, J. W.; & Saunders, R. C. (2005). Access and service use by children with autism spectrum disorders in Medicaid managed care. Journal of Autism and Developmental Disorders, 35(1), 3-13.
10. Chiri, G.; & Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16(5), 1081-1091.
11. Starfield, B.; & Shi, L. (2004). The medical home, access to care, and insurance: A review of evidence. Pediatrics, 113(5 Suppl), 1493-1498.
12. Farmer, J. E, Clark, M. J.; Drewel, E. H.; Swenson, T. M.; & Ge, B. (2011). Consultative care coordination through the medical home for CSHCN: A randomized controlled trial. Journal of Maternal and Child Health, 15(7), 1110-1118.
13. Homer, C. J.; Klatka, K.; Tomm, D.; et al. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122(4), e922-e937.
14. Child and Adolescent Health Measurement Initiative. (2012). National profile of children with special health care needs and autism spectrum disorders: Key findings from the 2009/10 NS-CSHCN & 2007 NSCH. Retrieved from www.childhealthdata.org.
15. Golnik, A.; Scal, P.; Wey, A.; & Gaillard, P. (2011). Autism-specific primary care medical home intervention. Journal of Autism and Developmental Disorders, 42(6), 1087-1093.
16. Thomas, K. C.; Ellis, A. R.; McLaurin, C.; Daniels, J.; & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37(10), 1902-1912.
17. Interactive Autism Network. (2011). Interactive Autism Network: Linking the autism community and researchers. Retrived from http://ianproject.org.
18. Lee, H.; Marvin, A. R.; Watson, T.; et al. (2010). Accuracy of phenotyping of autistic children based on Internet implemented parent report. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 153B(6), 1119-1126.
19. Daniels, A. M.; Rosenberg, R. E.; Anderson, C.; Law, J. K.; Marvin, A. R.; & Law, P. A. (2012). Verification of parent-report of child autism spectrum disorder diagnosis to a web-based autism registry. Journal of Autism and Developmental Disorders, 42(2), 257-265.
20. Child and Adolescent Health Measurement Initiative. (2009). Measuring medical home for children and youth. A resource manual for childhealth program leaders, researchers and analysts, pp. 1-55. Retrieved from http://www. childhealthdata.org/docs/medical-home/mhmanual-withappendices-updated-12-7-10- pdf.pdf.
21. National Center for Health Statistics. (2012). NCHS Urban-rural classification scheme for counties. Retrieved from http://www.cdc.gov/nchs/data- access/urban-rural.htm.
22. Medical Decision Logic Inc. (2013). Clinical research management system. Retrieved from http://www.mdlogix.com/news-events-2/crms-at-hopkins.
23. Strickland, B. B.; Jones, J. R.; Ghandour, R. M.; Kogan, M. D.; & Newacheck, P. W. (2011). The medical home: Health care access and impact for children and youth in the United States. Pediatrics, 127(4), 604-611.
24. Reichow, B. (2012). Overview of meta-analyses on early intensive behavioral intervention for young children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 512-520.
25. Kuo, D. Z.; Houtrow, A. J.; Arango, P.; Kuhlthau, K. A.; Simmons, J. M.; & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297-305.
26. Kuo, D. Z.; Frick, K. D.; & Minkovitz, C. S. (2011). Association of family-centered care with improved anticipatory guidance delivery and reduced unmet needs in child health care. Maternal and Child Health Journal, 15(8):1228-1237.
27. Ngui, E. M.; & Flores, G. (2006). Satisfaction with care and ease of using health care services among parents of children with special health care needs: The roles of race/ethnicity, insurance, language, and adequacy of family-centered care. Pediatrics, 117(4), 1184-1196.
28. Carbone, P. S.; Behl, D. D.; Azor, V.; & Murphy, N. A. (2009). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40(3), 317-324.
29. Hyman, S. L.; & Johnson, J. K. (2012). Autism and pediatric practice: Toward a medical home. Journal of Autism and Developmental Disorders, 42(6), 1156-1164.
30. Murphy, N. A.; & Carbone, P. S. (2011). Parent-provider-community partnerships: Optimizing outcomes for children with disabilities. Pediatrics, 128(4), 795-802.
31. Agency for Healthcare Research and Quality. (2011) Coordinating care in the medical neighborhood: Critical components and available mechanisms (AHRQ Publication No. 11-0064). Retrieved from http://www.pcmh.ahrq.gov/portal/server. pt/gateway/PTARGS-0-12547-955653-0-0-18/.
32. Cohen, E.; Kuo, D. Z.; Agrawal, R.; et al. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529-538.
33. Cohen, M. S. (1999). Families coping with childhood chronic illness: A research review. Families, Systems and Health, 17, 149-164.
34. Coury, D.; Jones, N. E.; Klatka, K.; Winklosky, B.; & Perrin, J. M. (2009). Healthcare for children with autism: The Autism Treatment Network. Current Opinion in Pediatrics, 21(6), 828-832.
35. Kataoka, S. H. (2012). Fixing a broken system: The story of autism, one state at a time. Journal of the American Academy of Child and Adolescent Psychiatry, 51(8), 759-761.