Advertisement

Maternal and Child Health Journal

, Volume 21, Issue 1, pp 36–44 | Cite as

Disparities in Quality and Access to Care for Children with Developmental Disabilities and Multiple Health Conditions

  • Nancy C. Cheak-ZamoraEmail author
  • Matthew Thullen
Article

Abstract

Background

The Maternal Child Health Bureau identified six indicators of quality and accessibility essential in achieving coordinated, family-centered, community-based care for children with special healthcare needs (CSHCN). Previous research examined associations between children with single conditions and individual indicators. We sought to identify disparities in meeting quality and accessibility indicators for children with different condition types.

Methods

The 2009–2010 National Survey of CSHCN is a nationally representative cross-sectional study with caregiver’s reports on 40,242 children (0–17 years). Children were categorized into one of seven conditions groups: physical health (PHC), mental health (MHC), developmental disability (DD), physical and mental (PHC and MHC), physical and developmental (PHC and DD), mental and developmental (MHC and DD) and physical, mental and developmental (PHC, MHC, and DD). Unadjusted and adjusted analyses determined associations between condition group and quality and access indicators.

Results

Children with DD, alone or in combination with another condition, were significantly less likely to meet each indicator (p < 0.01) after adjusting for individual demographic, child’s activity limitations and family-related characteristics. Compared with children with PHC, those with all three conditions (PHC, MHC, and DD) had the lowest odds of access to medical home (61 % decreased odds (DO)), community services (67 % DO), and adequate insurance (26 % DO); MHC and DD had the lowest odds of partnering in decision making (51 % DO); DD had the lowest odds of healthcare transition service (66 % DO).

Conclusions

Children with DD and multiple conditions experience disparities in quality and access to healthcare services, meeting most indictors half as often as other CSHCN.

Keywords

Children with special health care needs Maternal and child health Quality of care 

Notes

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

References

  1. Beal, A. C., Dougherty, D., Jorsling, T., Kam, J., Perrin, J., & Palmer, R. H. (2004). Quality measures for children’s health care. Pediatrics, 113(Supplement 1), 199–209.PubMedGoogle Scholar
  2. Busch, S. H., & Barry, C. L. (2009). Does private insurance adequately protect families of children with mental health disorders? Pediatrics, 124(Supplement 4), S399–S406.CrossRefPubMedPubMedCentralGoogle Scholar
  3. Cheak-Zamora, N. C., Yang, X., Farmer, J. E., & Clark, M. (2013). Disparities in transition planning for youth with autism spectrum disorder. Pediatrics, 131(3), 447–454.CrossRefPubMedGoogle Scholar
  4. Chen, A. Y., Schrager, S. M., & Mangione-Smith, R. (2012). Quality measures for primary care of complex pediatric patients. Pediatrics, 129(3), 433–445.CrossRefPubMedGoogle Scholar
  5. Child and Adolescent Health Measurement Initiative. (2012). National profile of children with special health care needs and autism specrum disorders: Key findings from the 2009/10 NS-CSHCN and 2007 NSCH. Retrieved from www.childhealthdata.org.
  6. Chiri, G., & Warfield, M. (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. doi: 10.1007/s10995-011-0833-6.CrossRefPubMedGoogle Scholar
  7. Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K., Simon, T. D., et al. (2011). Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538.CrossRefPubMedPubMedCentralGoogle Scholar
  8. Coller, R. J., Nelson, B. B., Sklansky, D. J., Saenz, A. A., Klitzner, T. S., Lerner, C. F., & Chung, P. J. (2014). Preventing hospitalizations in children with medical complexity: A systematic review. Pediatrics, 134(6), 1–20.CrossRefGoogle Scholar
  9. DuPaul, G. J., Carson, K. M., & Fu, Q. (2013). Medical home care for children with special needs: Access to services and family burden. Children’s Health Care, 42(1), 27–44.CrossRefGoogle Scholar
  10. Fedele, D. A., Molzon, E. S., Eddington, A. R., Hullmann, S. E., Mullins, L. L., & Gillaspy, S. G. (2014). Perceived barriers to care in a pediatric medical home the moderating role of caregiver minority status. Clinical Pediatrics, 53(4), 351–355.CrossRefPubMedGoogle Scholar
  11. Halfon, N., Houtrow, A., Larson, K., & Newacheck, P. W. (2012). The changing landscape of disability in childhood. The Future of Children, 22(1), 13–42.CrossRefPubMedGoogle Scholar
  12. 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.CrossRefPubMedGoogle Scholar
  13. Houtrow, A. J., Okumura, M. J., Hilton, J. F., & Rehm, R. S. (2011). Profiling health and health-related services for children with special health care needs with and without disabilities. Academic Pediatrics, 11(6), 508–516.CrossRefPubMedPubMedCentralGoogle Scholar
  14. Jobe, J. B., White, A. A., Kelley, C. L., Mingay, D. J., Sanchez, M. J., & Loftus, E. F. (1990). Recall strategies and memory for health-care visits. The Milbank Quarterly, 68(2), 171–189. doi: 10.2307/3350095.CrossRefPubMedGoogle Scholar
  15. Kenney, M. K., & Mann, M. (2013). Assessing systems of care for US children with epilepsy/seizure disorder. Epilepsy Research and Treatment. doi: 10.1155/2013/825824.PubMedPubMedCentralGoogle Scholar
  16. 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.CrossRefPubMedGoogle Scholar
  17. 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.CrossRefPubMedGoogle Scholar
  18. Liptak, G. S., Orlando, M., Yingling, J. T., Theurer-Kaufman, K. L., Malay, D. P., Tompkins, L. A., et al. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of Pediatric Health Care, 20(4), 245–252.CrossRefPubMedGoogle Scholar
  19. Litt, J. S., & McCormick, M. C. (2015). Care coordination, the family-centered medical home, and functional disability among children with special health care needs. Academic Pediatrics, 15(2), 185–190.CrossRefPubMedGoogle Scholar
  20. Lollar, D. J., Hartzell, M. S., & Evans, M. A. (2012). Functional difficulties and health conditions among children with special health needs. Pediatrics,. doi: 10.1542/peds.2011-0780.PubMedGoogle Scholar
  21. Maternal and Child Health Bureau. (2008). The National Survey of Children with Special Health Care Needs Chartbook 20052006. Rockville, MD..Google Scholar
  22. 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.CrossRefPubMedGoogle Scholar
  23. Montes, G., Halterman, J. S., & Magyar, C. I. (2009). Access to and satisfaction with school and community health services for US children with ASD. Pediatrics, 124(Supplement 4), S407–S413.CrossRefPubMedGoogle Scholar
  24. Nageswaran, S., Parish, S. L., Rose, R. A., & Grady, M. D. (2011). Do children with developmental disabilities and mental health conditions have greater difficulty using health services than children with physical disorders? Maternal Child Health Journal, 15, 634–641.CrossRefPubMedGoogle Scholar
  25. Nageswaran, S., Silver, E. J., & Stein, R. E. (2008). Association of functional limitation with health care needs and experiences of children with special health care needs. Pediatrics, 121(5), 994–1001.CrossRefPubMedGoogle Scholar
  26. Newacheck, P. W., & Kim, S. E. (2005). A national profile of health care utilization and expenditures for children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 159(1), 10–17.CrossRefPubMedGoogle Scholar
  27. Park, M. J., Adams, S. H., & Irwin, C. E. (2011). Health care services and the transition to young adulthood: challenges and opportunities. Academic Pediatrics, 11(2), 115–122.CrossRefPubMedGoogle Scholar
  28. Porterfield, S. L., & DeRigne, L. (2011). Medical home and out-of-pocket medical costs for children with special health care needs. Pediatrics, 128(5), 892–900.CrossRefPubMedGoogle Scholar
  29. Raphael, J. L., Mei, M., Brousseau, D. C., & Giordano, T. P. (2011). Associations between quality of primary care and health care use among children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 165(5), 399–404. doi: 10.1001/archpediatrics.2011.33.CrossRefPubMedGoogle Scholar
  30. Strickland, B. B., Jones, J. R., Newacheck, P. W., Bethell, C. D., Blumberg, S. J., & Kogan, M. D. (2014). Assessing systems quality in a changing health care environment: The 2009-10 National Survey of Children with Special Health Care Needs. Maternal and Child Health Journal,. doi: 10.1007/s10995-014-1517-9.Google Scholar
  31. Strickland, B. B., van Dyck, P. C., Kogan, M. D., Lauver, C., Blumberg, S. J., Bethell, C. D., et al. (2011). Assessing and ensuring a comprehensive system of services for children with special health care needs: a public health approach. American Journal of Public Health, 101(2), 224–231. doi: 10.2105/AJPH.2009.177915.CrossRefPubMedPubMedCentralGoogle Scholar
  32. van Dyck, P. C., McPherson, M., Strickland, B. B., Nesseler, K., Blumberg, S. J., Cynamon, M. L., et al. (2002). The national survey of children with special health care needs. Ambulatory Pediatrics, 2(1), 29–37.CrossRefPubMedGoogle Scholar
  33. Vohra, R., Madhavan, S., Sambamoorthi, U., & St Peter, C. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism, 18(7), 815–826.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  1. 1.Department of Health SciencesUniversity of MissouriColumbiaUSA

Personalised recommendations