Navigating School Interactions: Parents of Students with Intellectual Disabilities Speak Out


Purpose of Review

Our attraction to the verbiage of partnership casts a misleading conjecture that schools and parents are a collaborative unit with a single purpose. For too many parents, especially for those whose children present “problems” for schools, the relationship can be fraught with disillusionment and frustration. The purpose of this work is to highlight and contextualize the complex experiences of parents of children with intellectual disabilities as they navigate their child’s schooling.

Recent Findings

Through the presentation of research findings and project data, we explore the nature of the school parent relationships within the context of inclusive practice in schools.


Presented using data collected from 33 parent interviews, this work presents a summary of the struggles and successes of parent engagement within a system that vacillates between innovation and stagnation, between hypocrisy and integrity and between one version of school and another.

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Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. 1.

    Burke MM, Sandman L. In the voices of parents: suggestions for the next IDEA reauthorization. Research and Practice for Persons with Severe Disabilities. 2015;40(1):71–85.

    Article  Google Scholar 

  2. 2.

    Kleefman M, Reijneveld SA, Jansen DE. Prevalence and determinants of need for formal parenting support among parents raising a child with a borderline to mild intellectual disability. Journal of Intellectual and Developmental Disability. 2015 Jan 2;40(1):49–56.

  3. 3.

    Kurth JA, McQueston JA, Ruppar AL, Toews SG, Johnston R, McCabe KM. A description of parent input in IEP development through analysis IEP documents. Intellectual and developmental disabilities. 2019 Dec;57(6):485–98.

    Article  PubMed  PubMed Central  Google Scholar 

  4. 4.

    •• Reid, L., Bennett, S., Specht, S. White, R., Somma, M., Li, X., Lattanzio, R., Gavan, K., Kyle, G., Porter, G. & Patel, A. (2018) If inclusion means everyone, why not me? (2018). ARCH Disability Law Centre, Community Living Ontario. Comprehensive overview of parental experiences with schooling.

  5. 5.

    Lyons WE, Thompson SA, Timmons V. ‘We are inclusive. We are a team. Let’s just do it’: commitment, collective efficacy, and agency in four inclusive schools. Int J Incl Educ. 2016 Aug 2;20(8):889–907.

    Article  Google Scholar 

  6. 6.

    Porter GL, Towell D. Advancing inclusive education: keys to transformational change in public education systems. Toronto: Inclusive Education Canada (IEC); 2017.

    Google Scholar 

  7. 7.

    Reiser, R. (2012). Implementing inclusive education: a commonwealth guide to implementing article 24 of the UN convention on the rights of persons with disabilities. Commonwealth Secretariat.

  8. 8.

    Alnahdi GH. The positive impact of including students with intellectual disabilities in schools: children’s attitudes towards peers with disabilities in Saudi Arabia. Res Dev Disabil. 2019;85:1–7.

    Article  PubMed  PubMed Central  Google Scholar 

  9. 9.

    Parekh G, Brown RS. Changing lanes: the relationship between special education placement and students’ academic futures. Educational Policy. 2019;33(1):111–35.

  10. 10.

    Thompson SA, Timmons V. Authentic inclusion in two secondary schools: “It’s the full meal deal. It’s not just in the class. It’s everywhere.”. Exceptionality Education International. 2017;27(1):62–84.

    Google Scholar 

  11. 11.

    Jansen SL, van der Putten AA, Post WJ, Vlaskamp C. Do they agree? How parents and professionals perceive the support provided to persons with profound intellectual and multiple disabilities. J Intellect Develop Disabil. 2018;43(4):441–52.

    Article  Google Scholar 

  12. 12.

    Ryan C, Quinlan E. Whoever shouts the loudest: listening to parents of children with disabilities. J Appl Res Intellect Disabil. 2018 Mar;31:203–14.

    Article  PubMed Central  Google Scholar 

  13. 13.

    Burke MM, Meadan-Kaplansky H, Patton KA, Pearson JN, Cummings KP, Lee CE. Advocacy for children with social-communication needs: Perspectives from parents and school professionals. The Journal of Special Education. 2018;51(4):191-200.

  14. 14.

    Boshoff K, Gibbs D, Phillips RL, Wiles L, Porter L. Parents’ voices: ‘why and how we advocate’. A meta-synthesis of parents’ experiences of advocating for their child with autism spectrum disorder. Child Care Health Dev. 2016 Nov;42(6):784–97.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  15. 15.

    • Burke MM, Goldman SE. Documenting the experiences of special education advocates. The Journal of Special Education. 2017;51(1):3–13. Highlights difficulty with advocacy for children with special needs.

  16. 16.

    Amor AM, Hagiwara M, Shogren KA, Thompson JR, Verdugo MÁ, Burke KM, et al. International perspectives and trends in research on inclusive education: a systematic review. Int J Incl Educ. 2019;23(12):1277–95.

    Article  Google Scholar 

  17. 17.

    •• Slee R. Belonging in an age of exclusion. International Journal of Inclusive Education. 2019 23:9, 909-922, DOI: Comprehensive positional paper inclusion/parents.

  18. 18.

    Bentley JK. Lessons from the 1%: children with labels of severe disabilities and their peers as architects of inclusive education. International Journal of Inclusive Education. 2008;12(5–6):543–61.

  19. 19.

    Burke MM. Improving parental involvement: training special education advocates. Journal of Disability Policy Studies. 2013;23(4):225–34.

    Article  Google Scholar 

  20. 20.

    Florian L. On the necessary co-existence of special and inclusive education. Int J Incl Educ. 2019 Aug 3;23(7–8):691–704.

    Article  Google Scholar 

  21. 21.

    Tomlinson S. A sociology of special and inclusive education: exploring the manufacture of inability: Taylor & Francis; 2017.

  22. 22.

    • Missiuna C, Pollock N, Campbell W, DeCola C, Hecimovich C, Sahagian Whalen S, Siemon J, Song K, Gaines R, Bennett S, McCauley D. Using an innovative model of service delivery to identify children who are struggling in school. British Journal of Occupational Therapy. 2017;80(3):145–54. Explores innovative service delivery.

  23. 23.

    Sider S, Maich K, Morvan J. School principals and students with special education needs: leading inclusive schools. Can J Educ. 2017;40(2):1–31.

    Google Scholar 

  24. 24.

    Villeneuve M, Chatenoud C, Hutchinson NL, Minnes P, Perry A, Dionne C, et al. The experience of parents as their children with developmental disabilities transition from early intervention to kindergarten. Can J Educ. 2013:36(1).

  25. 25.

    Bennett S, Gallagher T, Shuttleworth M, Somma M, White R. Teen dreams: voices of students with intellectual disabilities. Journal on Developmental Disabilities. 2017;23(1):64–75.

    Google Scholar 

  26. 26.

    Jordan A. The supporting effective teaching project: 1. Factors influencing student success in inclusive elementary classrooms. Exceptionality Education International. 2018;28(3):10–27.

    Google Scholar 

  27. 27.

    Schwab S, Sharma U, Loreman T. Are we included? Secondary students’ perception of inclusion climate in their schools. Teach Teach Educ. 2018;75:31–9.

    Article  Google Scholar 

  28. 28.

    Burke MM, Hodapp RM. The nature, correlates, and conditions of parental advocacy in special education. Exceptionality. 2016;24(3):137–50.

    Article  Google Scholar 

  29. 29.

    Hall E. Spaces of social inclusion and belonging for people with intellectual disabilities. Journal of Intellectual Disability Research. 2010;54:48–57.

  30. 30.

    Nussbaum M. The capabilities of people with cognitive disabilities. Metaphilosophy. 2009;40(3–4):331–51.

    Article  Google Scholar 

  31. 31.

    Burke MM, Hodapp RM. Relating stress of mothers of children with developmental disabilities to family–school partnerships. Ment Retard. 2014;52(1):13–23.

    Article  Google Scholar 

  32. 32.

    Mueller TG, Vick AM. Rebuilding the family–professional partnership through facilitated individualized education program meetings: a conflict prevention and resolution practice. J Educ Psychol Consult. 2019;29(2):99–127.

    Article  Google Scholar 

  33. 33.

    Trainor AA. Diverse approaches to parent advocacy during special education home–school interactions: identification and use of cultural and social capital. Remedial and Special education. 2010;31(1):34–47. doi:

  34. 34.

    İlik ŞŞ, Er RK. Evaluating parent participation in individualized education programs by opinions of parents and teachers. J Educ Train Stud. 2019;7(2):76–83.

    Article  Google Scholar 

  35. 35.

    Mueller TG, Vick AM. An investigation of facilitated individualized education program meeting practice: promising procedures that Foster Family–Professional Collaboration. Teach Educ Spec Educ. 2019;42(1):67–81.

    Article  Google Scholar 

  36. 36.

    Scanlon D, Saenz L, Kelly MP. The effectiveness of alternative IEP dispute resolution practices. Learn Disabil Q. 2018;41(2):68–78.

    Article  Google Scholar 

  37. 37.

    Ryan J. Inclusive leadership and social justice for schools. Leadership and Policy in schools. 2006;5(1):3–17.

  38. 38.

    McConnell D, Savage A. Stress and resilience among families caring for children with intellectual disability: expanding the research agenda. Curr Dev Disord Rep. 2015 Jun 1;2(2):100–9.

    Article  Google Scholar 

  39. 39.

    Machalicek W, Lang R, Raulston TJ. Training parents of children with intellectual disabilities: trends, issues, and future directions. Current Developmental Disorders Reports. 2015;2(2):110–8.DOI

  40. 40.

    Mortier K, Hunt P, Leroy M, Van de Putte I, Van Hove G. Communities of practice in inclusive education. Educ Stud. 2010 Jul 1;36(3):345–55.

    Article  Google Scholar 

  41. 41.

    Theoharis G. Social justice educational leaders and resistance: toward a theory of social justice leadership. Educational administration quarterly. 2007;43(2):221–58.

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Corresponding author

Correspondence to Sheila Bennett.

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The authors declare that they have no conflicts of interest.

Human and Animal Rights and Informed Consent

“The Inclusion of Students with Developmental Disabilities” has been approved by the Western University Research Ethics Board. The Western University NMREB operates in compliance with the Tri-Council Policy Statement Ethical Conduct for Research Involving Humans (TCPS2), the Ontario Personal Health Information Protection Act (PHIPA, 2004) and the applicable laws and regulations of Ontario. Members of the NMREB who are named as Investigators in research studies do not participate in discussions related to, nor vote on such studies when they are presented to the REB. The NMREB is registered with the U.S. Department of Health & Human Services under the IRB registration number IRB 00000941.

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Bennett, S., Specht, J., Somma, M. et al. Navigating School Interactions: Parents of Students with Intellectual Disabilities Speak Out. Curr Dev Disord Rep (2020).

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  • Intellectual disabilities
  • Inclusion
  • Parents
  • Special education