Maternal and Child Health Journal

, Volume 19, Issue 8, pp 1744–1755 | Cite as

Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities

  • Michaela L. Zajicek-Farber
  • Gaetano R. Lotrecchiano
  • Toby M. Long
  • Jon Matthew Farber
Article

Abstract

Life course theory sets the framework for strong inclusion of family centered care (FCC) in quality medical homes of children with neurodevelopmental disabilities (CNDD). The purpose of this study was to explore the perceptions of families with their experiences of FCC in medical homes for CNDD. Using a structured questionnaire, the Family-Centered Care Self-Assessment Tool developed by Family Voices, this study surveyed 122 parents of CNDD in a large urban area during 2010–2012. Data collected information on FCC in the provision of primary health care services for CNDD and focused on family-provider partnerships, care setting practices and policies, and community services. Frequency analysis classified participants’ responses as strengths in the “most of the time” range, and weaknesses in the “never” range. Only 31 % of parents were satisfied with the primary health care their CNDD received. Based on an accepted definition of medical home services, 16 % of parents reported their CNDD had most aspects of a medical home, 64 % had some, and 20 % had none. Strengths in FCC were primarily evident in the family-provider partnership and care settings when focused on meeting the medical care needs of the child. Weaknesses in FCC were noted in meeting the needs of families, coordination, follow-up, and support with community resources. Improvements in key pediatric health care strategies for CNDD are recommended. CNDD and their families have multifaceted needs that require strong partnerships among parents, providers, and communities. Quality medical homes must include FCC and valued partnerships with diverse families and community-based providers.

Keywords

Family centered care Children with disabilities Medical home Pediatric health Coordination Partnership 

References

  1. 1.
    American Academy of Pediatrics (AAP). (2012). Policy statement: Patient and family-centered care and the pediatrician’s role. Pediatrics, 129(2), 394–404. doi:10.1542/peds.2011-3084.CrossRefGoogle Scholar
  2. 2.
    Boyle, C., Boulet, S., Schieve, L., Cohen, R., Blumberg, S., Yeargin-Allsopp, M., et al. (2011). Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics, 127(6), 1034–1042. doi:10.1542/peds.2010-2989.PubMedCrossRefGoogle Scholar
  3. 3.
    Landrigan, P., Lambertini, L., & Birnbaum, L. (2012). A research strategy to discover the environmental causes of autism and neurodevelopmental disabilities. Environmental Health Perspectives, 120(7), a258–a260. doi:10.1289/ehp.1104285.PubMedCentralPubMedCrossRefGoogle Scholar
  4. 4.
    Shapiro, B., & Batshaw, M. (2013). Developmental delay and intellectual disability. In M. Batshaw, N. Roizen, & G. Lotrecchiano (Eds.), Children with disabilities (7th ed., pp. 291–306). Baltimore: Paul H. Brookes.Google Scholar
  5. 5.
    Seligman, M., & Darling, R. (2007). Ordinary families, special children. New York: Guilford.Google Scholar
  6. 6.
    Trasande, L., & Liu, Y. (2011). Reducing the staggering costs of environmental disease in children, estimated at $76.6 billion in 2008. Health Affairs, 30(5), 863–870. doi:10.1377/hlthaff.2010.1239.PubMedCrossRefGoogle Scholar
  7. 7.
    Kogan, M., Strickland, B., & Newacheck, P. (2009). Building systems of care: Findings from the national survey of children with special healthcare needs. Pediatrics, 124(s4), s333–s336. doi:10.1542/peds.2009-1255B.PubMedCrossRefGoogle Scholar
  8. 8.
    Homer, C., Klatka, K., Romm, D., Kuhlthau, B., Bloom, S., Newacheck, P., & Perrin, J. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122, e922–e937. doi:10.1542/peds.2007-3762.PubMedCrossRefGoogle Scholar
  9. 9.
    Kuo, D., Bird, T., & Tilford, J. (2011). Associations of family-centered care with health care outcomes for children with special health care needs. Maternal and Child Health Journal, 15(6), 794–805. doi:10.007/s10995-010-0648-x.PubMedCrossRefGoogle Scholar
  10. 10.
    Healthy People 2020. (2015). Topics and objectives: Maternal, infant, and child health. Retrieved from http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=26
  11. 11.
    National Center for Medical Home Implementation (NCMI). (2014). What is a family-centered medical home? Retrieved from http://www.medicalhomeinfo.org/
  12. 12.
    Carbone, P., Behl, D., Azor, V., & Murphy, N. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40, 317–324. doi:10.1007/s10803-009-0874-5.PubMedCrossRefGoogle Scholar
  13. 13.
    Singh, G., Strickland, B., Ghandour, R., & van Dyck, P. (2009). Geographic disparities in access to a medical home among CSHCN. Pediatrics, 124, S352–S360. doi:10.1542/peds.2009-1255E.PubMedCrossRefGoogle Scholar
  14. 14.
    Bellin, M., Osteen, P., Heffernan, C., Levy, J., & Snyder-Vogelman, M. (2011). Parent and health care professional perspectives on family-centered care for children with special health care needs: Are we on the same page? Health Social Work, 36, 281–290. doi:10.1093/hsw/36.4.281.PubMedCrossRefGoogle Scholar
  15. 15.
    Fine, A., & Kotelchuck, M. (2010). Rethinking MCH: The life course model as an organizing framework. Rockville, MD: U.S. Department of Health and Human Services. 2010. Retrieved from http://mchb.hrsa.gov/lifecourse/rethinkingmchlifecourse.pdf.
  16. 16.
    Lu, M. (2014). Imrproving maternal and child health across the life course: Where do we go from here? Maternal and Child Health Journal, 18(339–343), 1007. doi:10.07/s10995-013-1400-0.Google Scholar
  17. 17.
    Bernheimer, L., Gallimore, R., & Weisner, T. (1990). Ecocultural theory as a context for the Individual family service plan. Journal of Early Intervention, 14(3), 219–233. doi:10.1177/105381519001400304.CrossRefGoogle Scholar
  18. 18.
    Bronfenbrenner, U. (1986). Ecology of the family as a context for human development: Research perspectives. Developmental Psychology, 22, 723–742. doi:10.1037/0012-1649.22.6.723.CrossRefGoogle Scholar
  19. 19.
    Jeffcott, S., Ibrahim, J., & Cameron, P. (2009). Resilience in healthcare and clinical handover. Quality and Safety in Health Care, 18, 256–260. doi:10.1136/qshc.2008.030163.PubMedCrossRefGoogle Scholar
  20. 20.
    Richardson, J. (2008). From risk to resilience: Promoting school-health partnerships for children. International Journal of Educational Reform, 17(1), 19–36. doi:10.2105/9780875530062ch24.Google Scholar
  21. 21.
    Zajicek-Farber, M. (2013). Caring and coping: Helping the family of a child with a disability. In M. Batshaw, N. Roizen, & G. Lotrecchiano (Eds.), Children with disabilities (pp. 657–672). Baltimore: Paul H. Brookes.Google Scholar
  22. 22.
    National Center for Cultural Competence (NCCC) Georgetown University Center for Child and Human Development. (2007). A Guide for advancing family-centered and culturally and linguistically competent care. Retreived from http://mchb.hrsa.gov/grants/fcclcguide2007.pdf
  23. 23.
    Murphy, N., Carbone, P., & Council on Children with Disabilities. (2011). Parent-provider-community partnerships: Optimizing outcomes for children with disabilities. Pediatrics, 128(4), 795–803. doi:10.1542/peds.2011-1467.PubMedCrossRefGoogle Scholar
  24. 24.
    Bamm, E., & Rosenbaum, P. (2008). Family-centered theory: origins, development, barriers, and supports to implementation in rehabilitation medicine. Archives of Physical Medicine and Rehabilitation, 89(8), 1618–1624. doi:10.1016/j.apmr.2007.12.034.PubMedCrossRefGoogle Scholar
  25. 25.
    Jolley, J., & Shields, L. (2009). The evolution of family-centered care. Journal of Pediatric Nursing, 24(2), 164–170. doi:10.1016/j.pedn.2008.03.010.PubMedCrossRefGoogle Scholar
  26. 26.
    Kuo, D., Houtrow, A., Arango, P., Kuhlthau, K., Simmons, J., & Neff, J. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305. doi:10.1007/s10995-011-0751-7.PubMedCentralPubMedCrossRefGoogle Scholar
  27. 27.
    Segaric, C. A., & Hall, W. A. (2005). The family theory–practice gap: A matter of clarity? Nursing Inquiry, 12(3), 210–218. doi:10.1111/j.1440-1800.2005.00270.x.PubMedCrossRefGoogle Scholar
  28. 28.
    Shannon, P. (2004). Barriers to family-centered services for infants and toddlers with developmental delays. Social Work, 49, 301–308. doi:10.1093/sw/49.2.301.PubMedCrossRefGoogle Scholar
  29. 29.
    Summers, J., Marquis, J., Mannanb, H., Turnbulla, A., Fleming, K., Poston, D., & Kupzyk, K. (2007). Relationship of perceived adequacy of services, family–professional partnerships, and family quality of life in early childhood. International Journal of Disability, Development and Education, 54(3), 319–338. doi:10.1080/10349120701488848.CrossRefGoogle Scholar
  30. 30.
    Turnbull, A., Summers, J., Turnbull, R., Brotherson, M., Winton, P., Roberts, R., & Stroup-Rentier, V. (2007). Family supports and services in early intervention: A bold vision. Journal of Early Intervention, 29, 187–206. doi:10.1177/105381510702900301.CrossRefGoogle Scholar
  31. 31.
    Leiter, V. (2004). Dilemmas in sharing care: Maternal provision of professionally driven therapy for children with disabilities. Social Science and Medicine, 58(4), 837–849. doi:10.1016/S0277-9536(03)00258-2.PubMedCrossRefGoogle Scholar
  32. 32.
    Bernheimer, L., & Weisner, T. (2007). Let me just tell you what I do all day…: The family story at the center of intervention research and practice. Infants and Young Children, 20(3), 192–201. doi:10.1097/01.IYC.0000277751.62819.9b.CrossRefGoogle Scholar
  33. 33.
    Siebes, R., Wijnroks, L., Ketelaar, M., van Schie, P., Gorter, J., & Vermeer, A. (2007). Parent participation in pediatric rehabilitation treatment centers in the Netherlands: A parents’ viewpoint. Child Care Health and Development, 33, 196–205. doi:10.1111/j.1365-2214.2006.00636.x.CrossRefGoogle Scholar
  34. 34.
    Halfon, N., Stevens, G., Larson, K., & Olson, L. (2011). Duration of a well-child visit: Association with content, family-centeredness, and satisfaction. Pediatrics, 128, 657–664. doi:10.1542/peds.2011-0586.PubMedCrossRefGoogle Scholar
  35. 35.
    Williams, P. G., Tomchek, S., Grau, R., Bundy, M. B., Davis, D. W., & Kleinert, H. (2012). Parent and physician perceptions of medical home care for children with autism spectrum disorder in the state of Kentucky. Clinical Pediatrics, 51(11), 1071–1078. doi:10.1177/0009922812460333.PubMedCrossRefGoogle Scholar
  36. 36.
    Garbutt, J. M., Leege, E., Sterkel, R., Gentry, S., Wallendorf, M., & Strunk, R. C. (2012). What are parents worried about? Health problems and health concerns for children. Clinical Pediatrics, 51(9), 840–847. doi:10.1177/0009922812455093.PubMedCentralPubMedCrossRefGoogle Scholar
  37. 37.
    Trivedi, H., Pattison, N., & Baptista, N. (2010). Pediatric medical home: Foundations challenges and future directions. Child and Adolescent Psychiatric Clinics in North America, 19(2), 183–197. doi:10.1016/j.chc.2010.02.006.CrossRefGoogle Scholar
  38. 38.
    Cooley, W., McAllister, J., Sherrieb, K., & Kuhlthau, K. (2009). Improved outcomes associated with medical home implementation in pediatric primary care. Pediatrics, 124, 358–364. doi:10.1542/peds.2008-2600.PubMedCrossRefGoogle Scholar
  39. 39.
    Ghandour, R., Perry, D., Kogan, M., & Strickland, B. (2011). The medical home as a mediator of the relation between mental health symptoms and family burden among children with special heath care needs. Academic Pediatrics, 11(2), 161–169. doi:10.1016/j.acap.2010.12.015.PubMedCrossRefGoogle Scholar
  40. 40.
    Katz, M., Laffel, L., Perrin, J., & Kuhlthau, K. (2012). Impact of Type 1 diabetes mellitus on the family is reduced with the medical home, care coordination, and family-centered care. Pediatrics, 160, 861–867. doi:10.1016/j.jpeds.2011.10.010.CrossRefGoogle Scholar
  41. 41.
    Toomey, S., Homer, C., & Finkelstein, J. (2010). Comparing medical homes for children withADHD and asthma. Academic Pediatrics, 10(1), 56–63. doi:10.1542/peds.2008-2600.PubMedCrossRefGoogle Scholar
  42. 42.
    Knapp, C., Hinojosa, M., Baron-Lee, J., Fernandez-Baca, D., Hinojosa, R., & Thompson, L. (2011). Factors associated with medical home among children with attention-deficit hyperactivity disorder. Maternal and Child Health Journal, 16(9), 1771–1778. doi:10.1007/s10995-011-0922-6.CrossRefGoogle Scholar
  43. 43.
    Bennet, A., Rankin, K., & Rosenberg, D. (2012). Does a medical home mediate racial disparities in unmet healthcare needs among children with special health care needs? Maternal and Child Health Journal, 16(Supplement 2), 330–338. doi:10.1007/s10995-012-1131-7.CrossRefGoogle Scholar
  44. 44.
    Hamilton, L., Lerner, C., Presson, A., & Klitzner, T. (2013). Effects of a medical home program for children with special health care needs on parental perceptions of care in an ethnically diverse patient population. Maternal and Child Health Journal, 17(3), 463–469. doi:10.1007/s10995-012-1018-7.PubMedCrossRefGoogle Scholar
  45. 45.
    Zickafoose, J. S., Gebremariam, A., Clark, S. J., & Davis, M. M. (2011). Medical home disparities between children with public and private insurance. Academic Pediatrics, 11(4), 305–310. doi:10.1016/j.acap.2011.03.006.PubMedCentralPubMedCrossRefGoogle Scholar
  46. 46.
    Cassel, C., Mendez, D., & Strauss, R. (2012). Maternal perspectives: Qualitative responses about perceived barriers to care among children with orofacial clefts in North Carolina. Cleft Palate Craniofacial Journal, 49(3), 262–269. doi:10.1597/09-235.CrossRefGoogle Scholar
  47. 47.
    Hyman, S., & Johnson, J. (2012). Autism and pediatric practice: Toward a medical home. Journal of Autism and Developmental Disorders, 42, 1156–1164. doi:10.1007/s10803-012-1474-3.PubMedCrossRefGoogle Scholar
  48. 48.
    Darrah, J., Wiart, L., Magill-Evans, J., Ray, L., & Andersen, J. (2012). Are family-centered principles, functioning goal setting and transition planning evident in therapy services for children with cerebral palsy? Child Care Health and Development, 38(1), 41–47. doi:10.1111/j1365-2214.2010.01160.x/full.CrossRefGoogle Scholar
  49. 49.
    Kilmer, R., Cook, J., & Munsell, E. (2010). Moving from principles to practice: Recommended policy changes to promote family-centered care. American Journal of Community Psychology, 46(3–4), 332–341. doi:10.1007/s10464-010-9350-9.PubMedCentralPubMedCrossRefGoogle Scholar
  50. 50.
    United States Census Bureau. (2014). State and County quick facts. District of Columbia quick facts. Retrieved from http://quickfacts.census.gov/qfd/states/11000lk.html
  51. 51.
    Kelly, K., Clark, B., Brown, V., & Sitzia, J. (2003). Good practices in the conduct and reporting of survey research. International Journal for Quality in Health Care, 15(3), 261–266. doi:10.1093/intqhc/mzg031.CrossRefGoogle Scholar
  52. 52.
    Family Voices. (2008). Family centered care self-assessment tool. Retreived from http://www.familyvoices.org/admin/work_family_centered/files/fcca_FamilyTool.pdf
  53. 53.
    Center for Medical Home Improvement (CMHI). (2014). Medical home index. Retrieved from http://www.medicalhomeinfo.org/
  54. 54.
    Data Resource Center for Child and Adolescent Health. National Surveys of Children’s Health and Children with Special Health Care Needs. Retrieved from http://www.childhealthdata.org/learn/NS-CSHCN
  55. 55.
    National Center for Family and Professional Partnerships (NCFPP) of Family Voices, Inc. (2014). Family driven quality measurement to promote family-centered care. Retrieved from http://www.fv-ncfpp.org/activities/fcc-tool-validation/
  56. 56.
    Statistical Package for Social Sciences (SPSS) Software. IBM. Available http://www-01.ibm.com/software/analytics/spss/
  57. 57.
    Faul, F., Erdfelder, E., Lang, A., & Buchner, A. (2007). G*Power 3: A flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behavioral Research Methods, 39, 175–191.CrossRefGoogle Scholar
  58. 58.
    Murphy, N., Caplin, D., Christian, B., Luther, B., Holobkov, R., & Young, P. (2011). The function of parents and their children with cerebral palsy. Physical Medicine and Rehabilitation, 3(2), 98–104. doi:10.1016/j.pmrj.2010.11.006.Google Scholar
  59. 59.
    Carbone, P. (2013). Moving from research to practice in the primary care of children with autism spectrum disorders. Academic Pediatrics, 13(5), 390–398. doi:10.1016/j.acap.2013.04.003.PubMedCrossRefGoogle Scholar
  60. 60.
    Bethell, C., Newacheck, P., Fine, A., Strickland, B., Antonelli, R., Wilhelm, C., et al. (2014). Optimizing health and health care systems for children with special health care needs using the life course perspective. Maternal and Child Health Journal, 18(2), 467–477. doi:10.1007/s10995-013-1371-1.PubMedCrossRefGoogle Scholar
  61. 61.
    Center for Disease Control (CDC) (2012). Prevention. Learn the signs: Act early. A developmental- behavioral pediatrics curriculum. Retrieved from http://www.cdc.gov/ncbddd/actearly/ACT/class.html
  62. 62.
    Guo, M., Chock, G., Parlin, L., Yamashiroya, V., & Rudoy, R. (2013). Utilization of children with special health care needs (CSHCN) Screener© by O‘ahu’s pediatricians. Hawaii Journal of Medicine and Public Health, 72(5), 162–166. PMCID: PMC3689516.PubMedCentralPubMedGoogle Scholar
  63. 63.
    Murphy, N., & Carbone, P. (2008). Promoting the participation of children with disabilities in sports, recreation, and physical activities. Pediatrics, 121, 1057–1061. doi:10.1542/peds.2008-0566.PubMedCrossRefGoogle Scholar
  64. 64.
    Akins, R., Angkustsiri, K., & Hansen, R. (2010). Complementary and alternative medicine in autism: An evidence-based approach to negotiating safe and efficatious interventions with families. Neurotherapeutics, 7(3), 307–319. doi:10.1016/j.nurt.2010.05.002.PubMedCrossRefGoogle Scholar
  65. 65.
    Zimmer, M., Desch, L., Rosen, L., Bailey, M., Becker, D., Culbert, T., & Wiley, S. E. (2012). Sensory integration therapies for children with developmental and behavioral disorders. Pediatrics, 129(6), 1186–1189. doi:10.1542/peds.2012-0876.PubMedCrossRefGoogle Scholar
  66. 66.
    Coury, D., Jones, N., Klatka, K., Winklosky, B., & Perrin, J. (2009). Healthcare for children with autism: The autism treatment network. Current Opinion in Pediatrics, 21(6), 828–832. doi:10.1097/MOP.0b013e328331eaaa.PubMedCrossRefGoogle Scholar
  67. 67.
    Ruble, L., McGrew, J., Dalrymple, N., & Jung, L. (2010). Examining the quality of IEPs for young children with autism. Journal of Autism and Developmental Disorders, 40(12), 1459–1470. doi:10.1007/s10803-010-1003-1.PubMedCentralPubMedCrossRefGoogle Scholar
  68. 68.
    Vismara, L., & Rogers, S. (2010). Behavioral treatments in autism spectrum disorder: What do we know? Annual Review of Clinical Psychology, 6, 447–468. doi:10.1146/annurev.clinpsy.121208.131151.PubMedCrossRefGoogle Scholar
  69. 69.
    National Registry of Evidence-Based Programs and Practices (NREPP), SAMHSA. (2014). Find an intervention. Retrieved from http://www.nrepp. samhsa.gov/Search.aspx.
  70. 70.
    Dauz Williams, P., Piamjariyakul, U., Graff, J., Stanton, A., Guthrie, A. C., Hafeman, C., & Williams, A. (2010). Developmental disabilities: Effects on well siblings. Issues in Comprehensive Pediatric Nursing, 33(1), 35–39. doi:10.3109/01460860903486515.CrossRefGoogle Scholar
  71. 71.
    Kogan, M., Newacheck, P., Blumberg, S., Heyman, K., Strickland, B., Singh, G., & Zeni, M. (2010). State variation in underinsurance among children with special health care needs in the United States. Pediatrics, 125(4), 673–680. doi:10.1542/peds.2009-1055.PubMedCrossRefGoogle Scholar
  72. 72.
    Catalyst Center. (2014). Public insurance programs and children with special health care needs. Retreived from http://www.hdwg.org/catalyst/publications/aca
  73. 73.
    Meschan Foy, J., Perrin, J., & For the American Academy Pediatric Task Force on Mental Health. (2010). Enhancing pediatric mental health care: Strategies for preparing a community. Pediatrics, 125(S3), 75–86. doi:10.1542/peds.2010-0788D. Retrieved from http://pediatrics.aapublications.org/content/125/Supplement_3/S75.full.html.
  74. 74.
    Coker, T. R., Rodriguez, M. A., & Flores, G. (2010). Family-centered care for US children with special health care needs: Who gets it and why? Pediatrics, 125(6), 1159–1167. doi:10.1542/peds.2009-1994.PubMedCrossRefGoogle Scholar
  75. 75.
    Kerfeld, C. I., Hoffman, J. M., Ciol, M. A., & Kartin, D. (2011). Delayed or forgone care and dissatisfaction with care for children with special health care needs: The role of perceived cultural competency of health care providers. Maternal and Child Health Journal, 15(4), 487–496. doi:10.1007/s10995-010-0598-3.PubMedCrossRefGoogle Scholar
  76. 76.
    Montes, G., & Halterman, J. (2011). White-black disparities in family-centered care among children with autism in the United States: Evidence from the NS-CSHCN 2005–2006. Academic Pediatrics, 11(4), 297–304. doi:10.1016/j.acap.2011.02.002.PubMedCrossRefGoogle Scholar
  77. 77.
    Halfon, N., Larson, K., Lu, M., Tullis, E., & Russ, S. (2014). Lifecourse health development: Past, present and future. Maternal and Child Health Journal, 18(2), 344–365. doi:10.1007/s10995-013-1346-2.PubMedCentralPubMedCrossRefGoogle Scholar
  78. 78.
    Anda, R., Felitti, V., Bremner, J., Walker, J., Whitfield, C., Perry, B., & Giles, W. (2006). The enduring effects of abuse and related adverse experiences in childhood: A convergence of evidence from neurobiology and epidemiology. European Archives of Psychiatry and Clinical Neuroscience, 256(3), 174–186. doi:10.1007/s00406-005-0624-4.PubMedCentralPubMedCrossRefGoogle Scholar
  79. 79.
    Kent, A. (2012). Developmental origins of health and adult disease: What should neonatologists/paediatricians be considering about the long-term health of their patients? Journal of Paediatrics and Child Health, 48(9), 730–734. doi:10.1111/j.1440-1754.2012.02541.x.PubMedCrossRefGoogle Scholar
  80. 80.
    Mueller, T., & Buckley, P. (2014). The odd man out: How fathers navigate the special education system. Remedial and Special Education, 53(1), 40–49. doi:10.177/0741932513513176.CrossRefGoogle Scholar
  81. 81.
    Pelchat, D., Lefebvre, H., & Perreault, M. (2003). Differences and similarities between mothers’ and fathers’ experiences of parenting a child with a disability. Journal of Child Health Care, 7(4), 231–247. doi:10.1177/13674935030074001.PubMedCrossRefGoogle Scholar
  82. 82.
    Daniels, A., Rosenberg, R., Anderson, C., Law, J., Marvin, A., & Law, P. (2011). 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. doi:10.1007/s10803-011-1236-7.CrossRefGoogle Scholar
  83. 83.
    Corcoran, J., & Nichols-Casebolt, A. (2004). Racial/ethnic disparities in the use of ecological framework for assessment and goal formulation. Child and Adolescent Social Work Journal, 21, 211–235. doi:10.1023/B:CASW.0000028453.79719.65.CrossRefGoogle Scholar
  84. 84.
    Zajicek-Farber, M. L., Nanavati, J., Rodkey Buehler, E., Long, T., & Lotrecchiano, G. (2015). Does perception of family centered care predict satisfaction with medical home services in families of children with special health care needs? Presentation at the annual meeting for the Society of Social Work Research (SSWR), New Orleans, LA.Google Scholar
  85. 85.
    Perrin, J., & Coury, D. (2012). Improving health care for children and youth with autism and other neurodevelopmental disorders. Pediatrics, 130(S2), S57–S201. doi:10.1542/peds.2012-0900A.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  • Michaela L. Zajicek-Farber
    • 1
  • Gaetano R. Lotrecchiano
    • 2
  • Toby M. Long
    • 3
  • Jon Matthew Farber
    • 4
  1. 1.National Catholic School of Social Service (NCSSS)The Catholic University of America (CUA)WashingtonUSA
  2. 2.Department of Clinical Research and Leadership and of Pediatrics, School of Medicine and Health SciencesGeorge Washington University (GWU)WashingtonUSA
  3. 3.Center for Child and Human DevelopmentGeorgetown University (GU)WashingtonUSA
  4. 4.ALL PediatricsAlexandriaUSA

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