Families of children with disabilities possess wisdom to inform and empower one another in the navigation of processes and systems across their child’s lifespan. As members of a culturally and linguistically diverse collaborative transition coalition network, researchers used survey (n = 27) and interview (n = 6) data from parents of children with disabilities in one state, analyzed through a mixed methods design to compile authentic information for families of children and adults with disabilities. The aim was to design a parent guidance timeline that is useful and inclusive of culturally and linguistically diverse parents. Though most parents responding and interviewed were white and middle class (45,000–150,000) or affluent (150,000 and up), there were some differences in ease of navigation across the lifespan for people of color as compared to white parents, evident in qualitative survey responses and in the interview. Quantitative data revealed that different supports are more important at different points in the lifespan. Frameworks for the analysis included funds of knowledge and causal agency with an emphasis on empowerment. Qualitative data yielded four themes: shared power, hope and resilience, compliance versus care, and relational capital/assets. The four themes converged to center navigation as an overarching construct connecting parental advice to their experiences. Implications for research and practice to empower families of children with disabilities to navigate systems are discussed, as well as a call to include advice from a more diverse sample.
Aleman-TovarJ.RiosK.BurkeM. M. (2022). Transition planning: Knowledge and preferences of Latinx families of youth with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 60(2), 128–144. https://doi.org/10.1352/1934-9556-60.2.128
2.
Americans With Disabilities Act of 1990, 42 U.S.C. § 12101 et seq. (1990).
3.
BarrowD. M. (2017). A phenomenological study of the lived experiences of parents of young children with autism receiving special education services [Doctoral dissertation, Portland State University]. https://doi.org/10.15760/etd.5919
4.
BatzR.YadavA. (2023). Parents’ experiences navigating early intervention and early childhood special education services: A qualitative metasynthesis. Journal of Early Intervention, 46(1), 19–38. https://doi.org/10.1177/10538151231164902
5.
BeightonC.WillsJ. (2019). How parents describe the positive aspects of parenting their child who has intellectual disabilities: A systematic review and narrative synthesis. Journal of Applied Research Intellectual Disability, 32, 1255–1279. https://doi.org/10.1111/jar.12617
6.
BennettB.GunrowA.ParkS. (2022). Improvement science at your fingertips. Improvement Collective and ISC LLC.
7.
BujnowskaA. M.RodríguezC.GarcíaT.ArecesD.MarshN. V. (2019). Parenting and future anxiety: The impact of having a child with developmental disabilities. International Journal of Environmental Research and Public Health, 16(4), 668. https://doi.org/10.3390/ijerph16040668
8.
BurkeM. M.FrancisG. L.Aleman-TovarJ. (2020). Family involvement in adolescent transition planning. In ShogrenK. A.WehmeyerM. L. (Eds.), Handbook of adolescent transition education for youth with disabilities (2nd ed., pp. 138–150). Routledge. https://doi.org/10.4324/9780429198342-13
9.
CelikP.UzunA. (2023). Stressful experiences and coping strategies of parents of young children with Down syndrome: A qualitative study. Journal of Applied Research in Intellectual Disabilities: JARID, 36(4), 881–894. https://doi.org/10.1111/jar.13108
10.
ChakrabortiM.GitimoghaddamM.McKellinW. H.MillerA. R.ColletJ. P. (2021). Understanding the implications of peer support for families of children with neurodevelopmental and intellectual disabilities: A scoping review. Frontiers in Public Health, 9, 719640. https://doi.org/10.3389/fpubh.2021.719640
11.
ChengA. W. Y.LaiC. Y. Y. (2023). Parental stress in families of children with special educational needs: A systematic review. Frontiers in Psychiatry, 14, 1198302. https://doi.org/10.3389/fpsyt.2023.1198302
DouglasS. N.MeadanH.SchultheissH. (2021). A meta-synthesis of caregivers’ experiences transitioning from early intervention to early childhood special education. Early Childhood Education Journal, 50, 371–383. https://doi.org/10.1007/s10643-021-01165-6
14.
Ellis-RobinsonT.SlusarzE.Haji-GeorgiM.SlichkoJ.MohammedA.TerryK.HazellK. (2025). Collaborative action research with diverse stakeholders: Building the Disability Champions Mentoring Network. Career Development and Transition for Exceptional Individuals, 48(1), 21–33. https://doi.org/10.1177/21651434231200176
15.
FinkeE. H.KremkowJ. M. D.DragerK. D. R.MurilloA.RichardsonL.SerpentineE. C. (2019). “I would like for my child to be happy with his life”: Parental hopes for their children with ASD across the lifespan. Journal of Autism and Developmental Disorders, 49, 2049–2068. https://doi.org/10.1007/s10803-019-03882-9
GonzálezN.MollL. C.AmantiC. (2005). Funds of knowledge: Theorizing practices in households, communities, and classrooms. Routledge.
18.
GriffinJ.GoreN. (2023). ‘Different things at different times’: Wellbeing strategies and processes identified by parents of children who have an intellectual disability or who are autistic, or both. Journal of Applied Research in Intellectual Disabilities: JARID, 36(4), 822–829. https://doi.org/10.1111/jar.13098
19.
GriffithsA.-J.AlsipJ.HartS. R.RoundR. L.BradyJ. (2021). Together we can do so much: A systematic review and conceptual framework of collaboration in schools. Canadian Journal of School Psychology, 36(1), 59–85. https://doi.org/10.1177/0829573520915368
20.
HiranoK. A.RoweD.LindstromL.ChanP. (2018). Systemic barriers to family involvement in transition planning for youth with disabilities: A qualitative metasynthesis. Journal of Child & Family Studies, 27(11), 3440–3456. https://doi.org/10.1007/s10826-018-1189-y
21.
Individuals With Disabilities Education Act, 20 U.S.C. § 1400 (2004).
22.
JuS.ZhangD.LandmarkL. J. (2018). Culturally and linguistically diverse family involvement in transition planning: A research synthesis. Journal of Special Education Leadership, 31(1), 16–26. https://eric.ed.gov/?id=EJ1275181
23.
KimK.-H.MorningstarM. E. (2020). Postschool outcomes for Korean American young adults with intellectual/developmental disabilities, and parental perceptions of transition planning. Social Behavior and Personality: An International Journal, 48(12), e9421. https://doi.org/10.2224/sbp.9421
24.
KucharczykS.OswaltA. K.WhitbyP. S.FrazierK.KochL. (2022). Emerging trends in youth engagement during transition. Rehabilitation Research, Policy, and Education, 36(1), 71–98. https://doi.org/10.1891/RE-21-16
25.
LincolnY. S.GubaE. G. (1985). Naturalistic inquiry. Sage.
26.
MahmicS.KernM. L.JansonA. (2021). Identifying and shifting disempowering paradigms for families of children with disability through a system informed positive psychology approach. Frontiers in Psychology, 12, 663640. https://doi.org/10.3389/fpsyg.2021.663640
MilesM. B.HubermanM. A.SaldañaJ. (2020). Qualitative data analysis: A methods sourcebook. Sage.
29.
MollL. C.AmantiC.NeffD.GonzálezN. (1992). Funds of knowledge for teaching: Using a qualitative approach to connect homes and classrooms. Theory Into Practice, 31(2), 132–141. https://doi.org/10.1080/00405849209543534
30.
Moran-EllisJ.AlexanderV. D.CroninA.DickinsonM.FieldingJ.SleneyJ.ThomasH. (2006). Triangulation and integration: Processes, claims, and implications. Qualitative Research, 6(1), 45–59. https://doi.org/10.1177/1468794106058870
MurrayM. M.HandysideL. M.StrakaL. A.Arton-TitusT. V. (2013). Parent empowerment: Connecting with preservice special education teachers. School Community Journal, 23(1), 145–168.
O’CathainA.MurphyE.NichollJ. (2010). Three techniques for integrating data in mixed methods studies. BMJ, 341, c4587. https://doi.org/10.1136/bmj.c4587
35.
OsborneE. E. (2020). Parent perspectives on their role in the transition planning process of children with significant support needs (Dissertations No. 716). https://digscholarship.unco.edu/dissertations/716
36.
ReschJ. A.MirelesG.BenzM. R.GrenwelgeC.PetersonR.ZhangD. (2010). Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55(2), 139. https://doi.org/10.1037/a0019473
37.
RossettiZ.BurkeM. M.HughesO.Schraml-BlockK.RiveraJ. I.RiosK.Aleman TovarJ.LeeJ. D. (2021). Parent perceptions of the advocacy expectation in special education. Exceptional Children, 87(4), 438–457. https://doi.org/10.1177/0014402921994095
38.
SaldañaJ. (2021). The coding manual for qualitative researchers. Sage.
39.
SandersonK. A.AquinoM. (2023). It’s a 24/7 deal: Parents of adults with intellectual and developmental disabilities discuss natural supports. Journal of Applied Research in Intellectual Disabilities, 36(6), 1264–1275. https://doi.org/10.1111/jar.13145
40.
SandersonK. A.BumbleJ. L. (2023). Parent perspectives: Understanding the postschool concerns of parents of transition-age youth with disabilities. Career Development and Transition for Exceptional Individuals, 46(3), 120–132. https://doi.org/10.1177/21651434221128490
41.
ShikarpuryaS.GilsonC. B. (2023). Resisting legacies of racialized adversities: Counterstories of South Asians navigating transition planning. Career Development and Transition for Exceptional Individuals, 47(1), 62–75. https://doi.org/10.1177/21651434231200817
42.
ShogrenK. A.WehmeyerM. L.PalmerS. B.Forber-PrattA. J.LittleT. J.LopezS. (2015). Causal agency theory: Reconceptualizing a functional model of self-determination. Education and Training in Autism and Developmental Disabilities, 50, 251–263. https://doi.org/10.1007/978-94-024-1042-6_5
43.
TrainorA. A. (2010). Reexamining the promise of parent participation in special education: An analysis of cultural and social capital. Anthropology & Education Quarterly, 41, 245–263. https://doi.org/10.1111/j.1548-1492.2010.01086.x
44.
TrainorA. A.CarterE. W.KarpurA.MartinJ. E.MazzottiV. L.MorningstarM. E.NewmanL.RojewskiJ. W. (2020). A framework for research in transition: Identifying important areas and intersections for future study. Career Development and Transition for Exceptional Individuals, 43(1), 5–17. https://doi.org/10.1177/2165143419864
45.
WalkerK.HicksG.JohnsonK.BooneB. (2022). Partnering with families through special education. The Ohio Statewide Family Engagement Center. https://ohiofamiliesengage.osu.edu
46.
WebsterS. (2023). Creating family–school partnerships: From ‘talking to’ towards ‘learning with’. Taylor & Francis.
47.
YossoT. J. (2005). Whose culture has capital? A critical race theory discussion of community cultural wealth. Race, Ethnicity and Education, 8(1), 69–91. https://doi.org/10.1080/1361332052000341006
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
