Abstract
Objectives Families, clinicians and policymakers desire improved delivery of health and related services for children with special health care needs (CSHCN). We analyzed factors associated with ease of use in obtaining such services. We also explored what were specific difficulties or delays in receiving services. By examining data from the National Survey of Children with Special Health Care Needs (NS-CSHCN 2009–2010) and using the revised criteria for “ease of use,” we were able to assess the percentage of parents who reported that their experiences seeking services for their children met those criteria. Methods We performed Chi square tests to examine associations between the independent variables and their relationship to the difficulties or delays assessed in the survey; including: eligibility, availability of services, waiting lists, cost, and access to information. We used logistic regression to determine the association of meeting the “ease of use” criteria with socio-demographic, complexity of need, and access variables. Results Overall, a third of families of CSHCN (35.3 %) encounter difficulties, delays, or frustrations in obtaining health and related services. The lack of access to health and community services in this study fell most heavily on children from racial/ethnic minority backgrounds, those in poverty, and those with complex emotional/behavioral or developmental needs and functional limitations. Conclusions for Practice CSHCN require services from a broad array of providers across multiple systems. Unfortunately, there are certain difficulties that hamper the accessibility of these systems. These findings underscore the need for both practice-level response and systems-level reform to ensure equitable distribution of health and community resources.
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Alker, J., Pollitz, K., Wachino, V., Libster, J., & Paradise, J. (2009). Children and health care reform: Assuring coverage that meets their health care needs. Menlo Park, CA: The Henry J. Kaiser Family Foundation.
Allison, P. D. (2009). Missing data. In R. E. Millsap & A. Maydeu-Olivares (Eds.), The Sage handbook of quantitative methods in psychology (pp. 72–89). Thousand Oaks, CA: Sage Publications Ltd.
Baker, D. L., Hebbeler, K., Davis-Alldritt, L., Anderson, L. S., & Knauer, H. (2015). School Health Services for Children with Special Health Care Needs in California. Journal of School Nursing. Epub ahead of print [1546-8364 (Electronic)].
Baruffi, G., Miyashiro, L., Prince, C. B., & Heu, P. (2005). Factors associated with ease of using community-based systems of care for CSHCN in Hawai’i. Maternal and Child Health Journal, 9(2 Suppl), S99–108. doi:10.1007/s10995-005-3861-2.
Bennett, A. C., Rankin, K. M., & Rosenberg, D. (2012). Does a medical home mediate racial disparities in unmet healthcare needs among children with special healthcare needs? Maternal and Child Health Journal, 16(Suppl 2), S330–S338. doi:10.1007/s10995-012-1131-7.
Berry, J. G., Hall, D. E., Kuo, D. Z., Cohen, E., Agrawal, R., Feudtner, C., et al. (2011). Hospital utilization and characteristics of patients experiencing recurrent readmissions within children’s hospitals. Jama, 305(7), 682–690. doi:10.1001/jama.2011.122
Bethell, C. D., Newacheck, P. W., Fine, A., Strickland, B. B., Antonelli, R. C., Wilhelm, C. L., 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
Centers for Disease Control. (2011). State and Local Area Integrated Telephone Survey. 2009–2010 National Survey of Children with Special Health Care Needs frequently asked questions. From http://www.cdc.gov/nchs/slaits/cshcn.htm
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.
DeCamp, L. R., Kieffer, E., Zickafoose, J. S., DeMonner, S., Valbuena, F., Davis, M. M., & Heisler, M. (2013). The voices of limited English proficiency Latina mothers on pediatric primary care: Lessons for the medical home. Maternal and Child Health Journal, 17(1), 95–109. doi:10.1007/s10995-012-0951-9.
Doig, J. L., McLennan, J. D., & Urichuk, L. (2009). ‘Jumping through hoops’: Parents’ experiences with seeking respite care for children with special needs. Child: Care, Health and Development, 35(2), 234–242. doi:10.1111/j.1365-2214.2008.00922.x.
Feldman, H. M., Buysse, C. A., Hubner, L. M., Huffman, L. C., & Loe, I. M. (2015). Patient Protection and Affordable Care Act of 2010 and children and youth with special health care needs. Journal of Developmental and Behavioral Pediatrics, 36(3), 207–217. doi:10.1097/dbp.0000000000000151.
Gannotti, M. E., Kaplan, L. C., Handwerker, W. P., & Groce, N. E. (2004). Cultural influences on health care use: Differences in perceived unmet needs and expectations of providers by Latino and Euro-American Parents of Children with Special Health Care Needs. Journal of Developmental and Behavioral Pediatrics, 25(3), 156–165. doi:10.1097/00004703-200406000-00003.
Halfon, N., & Hochstein, M. (2002). Life course health development: An integrated framework for developing health, policy, and research. The Milbank Quarterly, 80(3), 433–479. doi:10.1111/1468-0009.00019.
Karliner, L. S., Jacobs, E. A., Chen, A. H., & Mutha, S. (2007). Do professional interpreters improve clinical care for patients with limited English proficiency? A systematic review of the literature. Health Services Research, 42(2), 727–754. doi:10.1111/j.1475-6773.2006.00629.x.
Kingsnorth, S., Gall, C., Beayni, S., & Rigby, P. (2011). Parents as transition experts? Qualitative findings from a pilot parent-led peer support group. Child: Care, Health and Development, 37(6), 833–840. doi:10.1111/j.1365-2214.2011.01294.x.
Knapp, C. A., Madden, V. L., & Marcu, M. I. (2010). Factors that affect parent perceptions of provider-family partnership for children with special health care needs. Maternal and Child Health Journal, 14(5), 742–750. doi:10.1007/s10995-009-0503-0.
Krauss, M. W., Wells, N., Gulley, S., & Anderson, B. (2001). Navigating systems of care: Results from a national survey of families of children with special health care needs. Children’s Services: Social Policy, Research, & Practice, 4(4), 165–187. doi:10.1207/s15326918cs0404_02.
Kuo, D. Z., Cohen, E., Agrawal, R., Berry, J. G., & Casey, P. H. (2011). A national profile of caregiver challenges among more medically complex children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 165(11), 1020–1026. doi:10.1001/archpediatrics.2011.172.
Lewis, C. W. (2009). Dental care and children with special health care needs: a population-based perspective. Academic Pediatric, 9(6), 420–426. doi:10.1016/j.acap.2009.09.005.
Lukemeyer, A., Meyers, M. K., & Smeeding, T. (2000). Expensive children in poor families: Out-of-pocket expenditures for the care of disabled and chronically ill children in welfare families. Journal of Marriage and the Family, 62(2), 399–415. doi:10.1111/j.1741-3737.2000.00399.x.
Maternal and Child Health Bureau. (n.d.). Achieving and measuring success: A national agenda for children with special health care needs. Resource document, from http://www.mchb.hrsa.gov/programs/specialneeds/achievingsuccess.html
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 and Child Health Journal, 15(5), 634–641. doi:10.1007/s10995-010-0597-4.
National Survey of Children with Special Health Care Needs NS-CSHCN 2005/06. Data query from the Child and Adolescent Health Measurement Initiative. Data Resource Center for Child and Adolescent Health website. Retrieved 11 July 2014, from http://www.childhealthdata.org/browse/survey/results?q=448&r=1
Newacheck, P. W., Strickland, B., Shonkoff, J. P., Perrin, J. M., McPherson, M., McManus, M., & Arango, P. (1998). An epidemiologic profile of children with special health care needs. Pediatrics, 102(1 Pt 1), 117–123.
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. doi:10.1542/peds.2005-1088.
Skinner, A. C., & Slifkin, R. T. (2007). Rural/urban differences in barriers to and burden of care for children with special health care needs. The Journal of Rural Health, 23(2), 150–157. doi:10.1111/j.1748-0361.2007.00082.x.
Stabile, M., & Allin, S. (2012). The economic costs of childhood disability. The Future of Children, 22(1), 65–96. doi:10.1353/foc.2012.0008.
StataCorp. (2009). Stata statistical software: Release 11. College Station, TX: StataCorp LP.
Strickland, B. B., Jones, J. R., Newacheck, P. W., Bethell, C. D., Blumberg, S. J., & Kogan, M. D. (2015). Assessing systems quality in a changing health care environment: The 2009–2010 National Survey of Children with Special Health Care Needs. Maternal and Child Health Journal, 19(2), 353–361. doi:10.1007/s10995-014-1517-9.
van Dyck, P. C., Kogan, M. D., McPherson, M. G., Weissman, G. R., & Newacheck, P. W. (2004). Prevalence and characteristics of children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 158(9), 884–890. doi:10.1001/archpedi.158.9.884.
Wang, G., & Watts, C. (2007). Genetic counseling, insurance status, and elements of medical home: Analysis of the National Survey of Children with Special Health Care Needs. Maternal and Child Health Journal, 11(6), 559–567. doi:10.1007/s10995-007-0200-9.
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Rosen-Reynoso, M., Porche, M.V., Kwan, N. et al. Disparities in Access to Easy-to-Use Services for Children with Special Health Care Needs. Matern Child Health J 20, 1041–1053 (2016). https://doi.org/10.1007/s10995-015-1890-z
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DOI: https://doi.org/10.1007/s10995-015-1890-z