Abstract
When children with disabilities receive appropriate services, they experience long-term developmental benefits. Yet, military families of children with disabilities in the United States report lacking access to needed services and having difficulty navigating service delivery systems. Unlike civilian families, military families face added stressors such as deployment and relocation. Parent advocacy may be critical for military families of children with disabilities to access needed services. However, little research has explored advocacy among military families. The purpose of this exploratory study was to examine the advocacy experiences of military families of children with disabilities. Using a snowballing sampling, we conducted individual interviews with 11 military parents of children with disabilities from five states. Participants reported unique military experiences (e.g., satisfaction with the coverage of their healthcare program but had difficulty navigating healthcare policies), barriers to advocacy (e.g., limited school resources), and facilitators to advocacy (e.g., perseverance and resilience). Based on the findings, implications for practice and research are discussed.
Highlights
-
An estimated 20% of military children have disabilities and require services.
-
Parent advocacy is critical for military families of children with disabilities to access services.
-
Military families of children with disabilities face added stressors, such as deployment and relocation.
-
Military families of children with disabilities are resilient and are strong advocates.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Author. (in press).
Balcazar, F. E., Keys, C. B., Bertram, J. F., & Rizzo, T. (1996). Advocate development in the field of developmental disabilities: A data-based conceptual model. Mental Retard, 34(6), 341–351.
Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71, 195–207. https://doi.org/10.1177/001440290507100205.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
Burke, M. M., & Hodapp, R. M. (2016). The nature, correlates, and conditions of parental advocacy in special education. Exceptionality, 24(3), 137–150. https://doi.org/10.1080/09362835.2015.1064412.
Burke, M. M., & Goldman, S. E. (2017). Documenting the experiences of special education advocates. The Journal of Special Education, 51(1), 3–13. https://doi.org/10.1177/0022466916643714.
Burke, M. M., Meadan-Kaplansky, H., Patton, K. A., Pearson, J. N., Cummings, K. P., & Lee, C. (2018). Advocacy for children with social-communication needs: Perspectives from parents and school professionals. Journal of Special Education, 51, 191–200. https://doi.org/10.1177/0022466917716898.
Burke, M. M., Patton, K. A., & Lee, C. (2016). Parent advocacy across the lifespan. International Review of Research in Developmental Disabilities, 51, 193–231.
Classen, A. I., Horn, E., & Palmer, S. (2019). Needs of military families: Family and educator perspective. Journal of Early Intervention, 41, 233–255. https://doi.org/10.1177/1053815119847235.
Creswell, J. W. (2013). Qualitative inquiry and research design: Choosing among five approaches. Sage Publications, Ltd.
Davis, E. E. (2014, April). Current knowledge about military-connected children with special health care needs and their families. In Military-connected children with special health care needs and their families (pp. 6–13). Bethesda, MD: Symposium conducted at the National Institute of Child Health and Human Development (NICHD) and the HSC Foundation. https://www.nichd.nih.gov/sites/default/files/about/meetings/2014/Documents/military_families_summary.pdf.
Davis, J. M., & Finke, E. H. (2015). The experiences of military families with children with Autism Spectrum Disorder during relocation and Separation. Journal of Autism Developmental Disorder, 45, 2019–2034. https://doi.org/10.1007/s10803-015-2364-2.
Davis, J. M., Finke, E., & Hickerson, B. (2016). Service delivery experiences and intervention needs of military families with children with ASD. Journal of Autism and Developmental Disorders, 46, 1748–1761. https://doi.org/10.1007/s10803-016-2706-8.
DiPietro-Wells, R., Krippel, M. D., Ostrosky, M. M., & Santos, R. M. (2020). Debunking myths to promote collaboration with military families. Young Exceptional Children, 23, 175–186. https://doi.org/10.1177/1096250619856015.
Erevelles, N. (2002). Immaterial citizens: Cognitive disability, race, and the politics of citizenship. Disability, Culture, and Education, 1, 5–25.
Farmer, E. M., Dorsey, S., & Mustillo, S. A. (2004). Intensive home and community interventions. Child and Adolescent Psychiatric Clinics, 13, 857–884. https://doi.org/10.1016/j.chc.2004.04.004.
Freuler, A., & Baranek, G. (2016). Military spouses caring for a child with autism: Exploring risk and protective factors. Journal of Family Medicine, 3, 1–7.
Gerwitz, A. H., Erbes, C. R., Polusny, M. A., Forgatch, M. S., & DeGarmo, D. S. (2011). Helping military families through the deployment process: Strategies to support parenting. Professional Psychology: Research and Practice, 42, 56–62. https://doi.org/10.1037/a0022345.
Glaser, B., & A. L. Strauss. (1967). The discovery of grounded theory. New York City: Aldine.
Goin-Kochel, R. P., Meyers, B. J., & Mackintosh, V. G. (2007). Parental reports on the use of treatments and therapies for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 1, 195–209. https://doi.org/10.1016/j.rasd.2006.08.006.
Guba, E. G., & Lincoln, Y. S. (1989). Fourth generation evaluation. Newbury Park, CA: Sage.
Jagger, J. C., & Lederer, S. (2014). Impact of geographic mobility on military children’s access to special education services. Children & Schools, 36, 15–22. https://doi.org/10.1093/cs/cdt046.
Jensen, V. K., & Spannagel, S. C. (2010). The spectrum of autism spectrum disorder: A spectrum of needs, services, and challenges. Journal of Contemporary Psychotherapy, 41, 1–9. https://doi.org/10.1007/s10879-010-9161-1.
Kremkow, J. M. D., & Finke, E. H. (2020). The Effectiveness of a Distance Peer Mentor Training Program with Military Spouses with Children with Autism. Journal of Autism and Developmental Disorders, 50, 1097–1110. https://doi.org/10.1007/s10803-019-04334-0.
Kohler, P., Gothberg, J., & Coyle, J. (2017). Using the taxonomy for transition programming 2.0 to guide transition education. In A. L. Ellis (Ed.) Transitioning children with disabilities: Studies in inclusive education (pp. 169–182). Sense. https://doi.org/10.1007/978-94-6351-134-6_11.
Military on Source (2020). Special Needs-Resources. https://www.militaryonesource.mil/family-relationships/special-needs/special-needs-resources/
O’Toole, C. J. (2013). Disclosing our relationships to disabilities: An invitation for disability studies scholars. Disability Studies Quarterly, 33, 5 https://doi.org/10.18061/dsq.v33i2.3708.
Patton, M. Q. (2002). Qualitative research & evaluation methods. Sage Publications.
Russo, T. J., & Fallon, M. A. (2001). Helping military families who have a child with a disability cope with stress. Early Childhood Education Journal, 29, 3–8.
Savin-Baden, M. & Major, C. H. (2013). Qualitative research: The essential guide to theory and practice. Routledge.
Schneider, R. L., & Lester, L. (2001). Social work advocacy: A new framework for action. Belmont, CA: Wadsworth Publishing.
Stanley, S. L. (2015). The advocacy efforts of African American mothers of children with disabilities in rural special education: Considerations for school professionals. Rural Special Education Quarterly, 34(4), 3–17. https://doi.org/10.1177/875687051503400402.
Sturges, J. E., & Hanrahan, K. J. (2004). Comparing telephone and face-to-face qualitative interviewing: A research note. Qualitative Research, 4, 107–118. https://doi.org/10.1177/1468794104041110.
Taylor, N. E., Wall, S. M., Liebow, H., Sabatino, C. A., Timberlake, E. M., & Farber, M. Z. (2005). Mother and soldier: Raising a child with a disability in a low-income military family. Exceptional Children, 72, 83–99. https://doi.org/10.1177/001440290507200105.
Taylor, J. L., Hodapp, R. M., Burke, M. M., Rabideau, C., & Waitz-Kudla, S. N. (2017). Training parents of youth with autism spectrum disorders to advocate for adult disability services: Results from a pilot randomized controlled trial. Journal of Autism and Developmental Disorders, 47, 846–857. https://doi.org/10.1007/s10803-016-2994-z.
Trainor, A. A. (2010). Diverse approaches to parent advocacy during special education home-school interactions. Remedial and Special Education, 31, 34–47.
Tricare. (2021). Covered services. https://www.tricare.mil/CoveredServices.
U.S. Navy Office of Information. (2020). JAG Community Provides Dedicated Legal support to families in Exceptional Family Member Program. Retrieved October 28, 2020, from https://bit.ly/3cs9Iav.
Wang, M., Mannan, H., Poston, D., Turnbull, A., & Summers, A. (2004). Parents’ perceptions of advocacy activities and their impact on quality of life. Research & Practice for Persons with Severe Disabilities, 29(2), 144–155.
Wehmeyer, M. L., Shogren, K. A., Kurth, J. A., Morningstar, M. E., Kozleski, E. B., Agran, M., Jackson, L., Jameson, J. M., McDonnell, J., & Ryndak, D. L. (2016). Including students with extensive and pervasive support needs. Advances in Special Education, 31, 129–155. https://doi.org/10.1108/S0270-401320160000031009.
Wright, A. C., & Taylor, S. (2014). Advocacy by parents of young children with special needs: Activities, processes, and perceived effectiveness. Journal of Social Service Research, 40, 591–605. https://doi.org/10.1080/01488376.2014.896850.
Younggren, N. (2013). What’s the deployment cycle for military families? Early Intervention Strategies for Success. Retrieved October 10, 2013, from https://veipd.org/earlyintervention/2013/10/10/whats-the-deployment-cycle-for-military-families/.
Funding
This study was partially funded by the Military Service Knowledge Collaborative Seed Grant Program.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of Interest
The authors declare that they have no conflict of interest.
Consent to Participate
The authors declare no competing interests.
Additional information
Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Aleman-Tovar, J., Schraml-Block, K., DiPietro-Wells, R. et al. Exploring the Advocacy Experiences of Military Families with Children Who Have Disabilities. J Child Fam Stud 31, 843–853 (2022). https://doi.org/10.1007/s10826-021-02161-5
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10826-021-02161-5