Abstract
Objectives
This study describes rates of perceived and unmet need for family support services (care coordination, respite care, and family mental health care) among a national sample of children with special health care needs (CSHCN), distinguishing children with emotional, behavioral, or developmental problems (EBDPs) from children with primarily physical chronic conditions. It also examines if a child having EBDPs is associated with perceived and unmet family support service needs and investigates public versus private health insurance's moderating effect on this association.
Methods
Using data from the National Survey of Children with Special Health Care Needs (2005/2006 and 2009/2010), this cross-sectional study uses multi-level, fixed effects logistic regression.
Results
When compared to CSHCN with no EBDPs, parents of CSHCN with EBDPs report greater need for all family support services and greater rates of unmet need for all support services. This pattern of greater need for CSHCN with EBDPs versus those without is similar among those with public and private health insurance. Among CSHCN with family support needs, however, the pattern differs. For CSHCN with EBDPs, having public insurance is associated with lower probabilities of unmet needs compared to private insurance. For CSHCN without EBDPs, having public insurance has a mixed effect on probability of reporting unmet need.
Conclusion
Having EBDPs and public insurance is associated with increased perceived need, but public insurance also confers particular benefit for children with EBDPs.
Similar content being viewed by others
References
Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior, 36(1), 1–10. https://doi.org/10.2307/2137284
Bailey, B. C., & Davis, T. S. (2012). Mental health parity legislation: Implications for children and youth with serious emotional disturbance. Social Work in Mental Health, 10(1), 12–33. https://doi.org/10.1080/15332985.2011.609776
Biel, M. G., Tang, M. H., & Zuckerman, B. (2020). Pediatric mental health care must be family mental health care. JAMA Pediatrics, 174(6), 519–520. https://doi.org/10.1001/jamapediatrics.2020.0065
Blanchard, L. T., Gurka, M., Blackman, J. (2006). Emotional, developmental, and behavioral health of American children and their families: A report From the 2003 National Survey of Children’s Health. Pediatrics, 117(6), e1202–e1212. https://doi.org/10.1542/peds.2005-2606
Blumberg, S. J., Welch, E. M., Chowdhury, S. R., Upchurch, H. L., Parker, E. K., & Skalland, B. J. (2008). Design and operation of the National Survey of Children with Special Health Care Needs, 2005–2006. Vital and Health Statistics. Ser. 1. Programs and Collection Procedures, 45, 1–188.
Bramlett, M. D., Blumberg, S. J., Ormson, A. E., George, J. M., Williams, K. L., Frasier, A. M., Skalland, B. J., Santos, K. B., Vsetecka, D. M., Morrison, H. M., Pedlow, S., & Wang, F. (2014). Design and operation of the National Survey of Children with Special Health Care Needs, 2009–2010. Vital and Health Statistics. Ser. 1. Programs and Collection Procedures, 57, 1–271.
Bramlett, M. D., Read, D., Bethell, C., & Blumberg, S. J. (2009). Differentiating subgroups of Children with Special Health Care Needs by health status and complexity of health care needs. Maternal and Child Health Journal, 13(2), 151–163. https://doi.org/10.1007/s10995-008-0339-z
Brown, N. M., Green, J. C., Desai, M. M., Weitzman, C. C., & Rosenthal, M. S. (2014). Need and unmet need for care coordination among children with mental health conditions. Pediatrics, 133(3), e530–e537. https://doi.org/10.1542/peds.2013-2590
Cheak-Zamora, N. C., & Thullen, M. (2017). Disparities in quality and access to care for children with developmental disabilities and multiple health conditions. Maternal and Child Health Journal, 21(1), 36–44. https://doi.org/10.1007/s10995-016-2091-0
Child and Adolescent Health Measurement Initiative. (2012a). 2009–2010 NS-CSHCN indicator and outcome variables SPSS codebook, Version 1. Data Resource Center for Child and Adolescent Health. Accessed 14 Dec 2020.
Child and Adolescent Health Measurement Initiative. (2012b). Who are children with special health care needs (CSHCN)? (supported by Cooperative Agreement 1‐U59‐MC06980‐01). Data Resource Center, US Department of Health and Human Services, Health Resources and Services Administration, and Maternal and Child Health Bureau. https://www.cahmi.org/wp-content/uploads/2014/06/CSHCNS-whoarecshcn_revised_07b-pdf.pdf
Cook, B. L., Doksum, T., Chen, C.-N., Carle, A., & Alegría, M. (2013). The role of provider supply and organization in reducing racial/ethnic disparities in mental health care in the US. Social Science & Medicine, 1982(84), 102–109. https://doi.org/10.1016/j.socscimed.2013.02.006
Cordeiro, A., Davis, R. K., Antonelli, R., Rosenberg, H., Kim, J., Berhane, Z., & Turchi, R. (2018). Care coordination for children and youth with special health care needs: National survey results. Clinical Pediatrics, 57(12), 1398–1408. https://doi.org/10.1177/0009922818783501
de Voursney, D., & Huang, L. N. (2016). Meeting the mental health needs of children and youth through integrated care: A systems and policy perspective. Psychological Services, 13(1), 77–91. https://doi.org/10.1037/ser0000045
Dey, M., Wang, J., Jorm, A., & Mohler-Kuo, M. (2015). Children with mental versus physical health problems: Differences in perceived disease severity, health care service utilization and parental health literacy. Social Psychiatry & Psychiatric Epidemiology, 50(3), 407–418. https://doi.org/10.1007/s00127-014-0944-7
Dusing, S. C., Skinner, A. C., & Mayer, M. L. (2004). Unmet need for therapy services, assistive devices, and related services: Data from the National Survey of Children With Special Health Care Needs. Ambulatory Pediatrics, 4(5), 448–454. https://doi.org/10.1367/A03-202R1.1
Frank, R. G., Goldman, H. H., & Hogan, M. (2003). Medicaid and mental health: Be careful what you ask for. Health Affairs, 22(1), 101–113. https://doi.org/10.1377/hlthaff.22.1.101
Garrett, A. B., & Gangopadhyaya, A. (2016). Who gained health insurance coverage under the aA, and where do they live? (SSRN Scholarly Paper ID 2896220). Social Science Research Network. https://papers.ssrn.com/abstract=2896220. Accessed 22 May 2019.
Gelberg., L, Andersen, R. M., & Leake, B. D. (2000). The behavioral model for vulnerable populations: Application to medical care use and outcomes for homeless people. Health Services Research 34(6), 1273–1302.
Graaf, G., & Snowden, L. (2019). Public health coverage and access to mental health care for youth with complex behavioral healthcare needs. Administration and Policy in Mental Health and Mental Health Services Research. https://doi.org/10.1007/s10488-019-00995-2
Graaf, G., & Snowden, L. (2020). Medicaid waiver adoption for youth with complex behavioral health care needs: An analysis of state decision-making. Journal of Disability Policy Studies, 31(2), 87–98. https://doi.org/10.1177/1044207319897058
Grace, A. M., Noonan, K. G., Cheng, T. L., Miller, D., Verga, B., Ruben, D., & Rosenbaum, S. (2014). The ACA’s pediatric essential health benefit has resulted in a state-by-state patchwork of coverage with exclusions. Health Affairs (Project Hope), 33(12), 2136–2143. https://doi.org/10.1377/hlthaff.2014.0743
Harrington, C., Ng, T., LaPlante, M., & Kaye, H. S. (2012). Medicaid home- and community-based services: Impact of the Affordable Care Act. Journal of Aging & Social Policy, 24(2), 169–187. https://doi.org/10.1080/08959420.2012.659118
Howell, E. M. (2004). Access to children’s mental health services under Medicaid and SCHIP. The Urban Institute. http://webarchive.urban.org/publications/311053.html. Accessed 22 Apr 2015.
Inkelas, M., Raghavan, R., Larson, K., Kuo, A. A., & Ortega, A. N. (2007). Unmet mental health need and access to services for children with special health care needs and their families. Ambulatory Pediatrics, 7(6), 431–438. https://doi.org/10.1016/j.ambp.2007.08.001
Keller, D., & Chamberlain, L. J. (2014). Children and the patient protection and affordable care act: Opportunities and challenges in an evolving system. Academic Pediatrics, 14(3), 225–233. https://doi.org/10.1016/j.acap.2014.02.004
Kenney, M. K., & Chanlongbutra, A. (2020). Prevalence of parent reported health conditions among 0- to 17-year-olds in rural United States: National Survey of Children’s Health, 2016–2017. The Journal of Rural Health, 36(3), 394–409. https://doi.org/10.1111/jrh.12411
Kilmer, R. P., Cook, J. R., Munsell, E. P., & Salvador, S. K. (2010). Factors associated with positive adjustment in siblings of children with severe emotional disturbance: The role of family resources and community life. American Journal of Orthopsychiatry, 80(4), 473–481. https://doi.org/10.1111/j.1939-0025.2010.01050.x
Koyanagi, C., Alfano, E. & Stein, L. (2008). Following the rules. Bazelon Center for Mental Health Law. Retrieved from http://www.bazelon.org.
Lutenbacher, M., Karp, S., Ajero, G., Howe, D., & Williams, M. (2005). Crossing community sectors: Challenges faced by families of children with special health care needs. Journal of Family Nursing, 11(2), 162–182. https://doi.org/10.1177/1074840705276132
Mark, T. L., Levit, K. R., Vandivort-Warren, R., Buck, J. A., & Coffey, R. M. (2011). Changes in US spending on mental health and substance abuse treatment, 1986–2005, and implications for policy. Health Affairs, 30(2), 284–292. https://doi.org/10.1377/hlthaff.2010.0765
McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., Perrin, J. M., Shonkoff, J. P., & Strickland, B. (1998). A new definition of children with special health care needs. Pediatrics, 102(1), 137–139. https://doi.org/10.1542/peds.102.1.137
Miller, R., Tumin, D., Hayes, D., Uffman, J. C., Raman, V. T., & Tobias, J. D. (2018). Unmet need for care coordination among children with special health care needs. Population Health Management. https://doi.org/10.1089/pop.2018.0094
Nageswaran, S. (2009). Respite care for children with special health care needs. Archives of Pediatrics & Adolescent Medicine, 163(1), 49–54. https://doi.org/10.1001/archpediatrics.2008.504
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. https://doi.org/10.1007/s10995-010-0597-4
Nygård, C., & Clancy, A. (2018). Unsung heroes, flying blind—A metasynthesis of parents’ experiences of caring for children with special health-care needs at home. Journal of Clinical Nursing, 27(15–16), 3179–3196. https://doi.org/10.1111/jocn.14512
Serchuk, M. D., Corrigan, P. W., Reed, S., & Ohan, J. L. (2021). Vicarious stigma and self-stigma experience by parents of children with mental health and/or neurodevelopmental disorders. Community Mental Health Journal. https://doi.org/10.1007/s10597-021-00774-0
Silverstein, M., Diaz-Linhart, Y., Cabral, H., Beardslee, W., Broder-Fingert, S., Kistin, C. J., Patts, G., & Feinberg, E. (2018). Engaging mothers with depressive symptoms in care: Results of a randomized controlled trial in head start. Psychiatric Services (Washington), 69(11), 1175–1180. https://doi.org/10.1176/appi.ps.201800173
Strunk, J. A. (2010). Respite care for families of special needs children: A systematic review. Journal of Developmental and Physical Disabilities, 22(6), 615–630. https://doi.org/10.1007/s10882-010-9190-4
Thomas, K. C., Williams, C. S., deJong, N., & Morrissey, J. P. (2016). Examination of parent insurance ratings, child expenditures, and financial burden among children with autism: A mismatch suggests new hypotheses to test. Pediatrics, 137(Supplement 2), S186–S195. https://doi.org/10.1542/peds.2015-2851Q
Uberoi, N. K. (2015). The Patient Protection and Affordable Care Act’s Essential Health Benefits (EHB) (R44163); p. 21). Congressional Research Service.
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. https://doi.org/10.1177/1362361313512902
Wei, X., & Yu, J. W. (2012). The concurrent and longitudinal effects of child disability types and health on family experiences. Maternal and Child Health Journal, 16(1), 100–108. https://doi.org/10.1007/s10995-010-0711-7
Funding
The authors have not received external funding for this study.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no conflict of interest.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Appendix
Appendix
See Table 4.
Rights and permissions
About this article
Cite this article
Graaf, G., Annis, I., Martinez, R. et al. Predictors of Unmet Family Support Service Needs in Families of Children with Special Health Care Needs. Matern Child Health J 25, 1274–1284 (2021). https://doi.org/10.1007/s10995-021-03156-w
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10995-021-03156-w