Online ISSN: 2325-7466
2006
Triannual
National Association of Special Education Teachers (NASET)
United States

Articles

But… How Helpful is That? Parents’ Views on the Helpfulness of Selected Resources When Making Educational Decisions for Their Young Children with Disabilities

María Isolina Ruiz, Ph.D., Linda Flynn-Wilson, Ph.D., Lauren Giovingo, Ph.D., Philip G. Wilson, Ph.D.
  • María Isolina Ruiz, Ph.D. (Author) University of Louisiana at Lafayette image/svg+xml
    María Isolina Ruiz, Ph.D. is an assistant professor of special education at the University of Louisiana at Lafayette. Her research focuses on parents’ participation in the processes associated with the education of their children with special needs; school collaboration with culturally and linguistically diverse families; effective assesment and instruction of diverse students, including English; and the development of responsive pre-service and inservice teachers.
  • Linda Flynn-Wilson, Ph.D. (Author) University of New Orleans image/svg+xml
    Linda Flynn, Ph.D. is a professor at the University of New Orleans. Her areas of research include services and supports for families of children with disabilities, supporting children with disabilities in inclusive settings, and priorities of culturally and linguistically diverse children and their families. She has served as visiting professor at the University of Vienna and has served as Co-Director of the International Symposium between the University of New Orleans and the University of Innsbruck.
  • Lauren Giovingo, Ph.D. (Author) Louisiana State University image/svg+xml
    Lauren K. Giovingo, Ph.D. served as the LEND coordinator, ASD Interdisciplinary Clinic coordinator, and an educational consultant for the Human Development Center at the Louisiana State University Health Sciences Center-New Orleans at the time this study was completed. Her teaching, training, and research interests include interdisciplinary collaboration, early identification of autism spectrum disorders, academic and behavioral strategies and interventions, and data-based decision making to improve student outcomes.
  • Philip G. Wilson, Ph.D. (Author) Louisiana State University
    Philip G. Wilson, Ph.D. is an associate professor in the School of Allied Health Professions and director of the Human Development Center at the Louisiana State University Health Sciences Center-New Orleans. His teaching and research interests include promoting and supporting the full participation of individuals with disabilities and their families in all aspects of community life.
DOI
https://doi.org/10.64546/jaasep.399
Abstract
Q-methodology was used to explore parents’ views on the helpfulness of selected resources when making educational decisions for their young children with disabilities. Parents’ determination to get what was best for the child and school staff who understood the child’s disabilities averaged the highest scores. Children’s age and type of disability seemed to influence parents’ perceptions of the helpfulness of specific resources. However, participants agreed that each one of the selected resources could be helpful to them at some point in their journey to secure adequate education and services for their children. By-person factor analysis identified three distinctive viewpoints on the helpfulness of resources presented to participants: a) using a balanced combination of internal and external resources, b) preference for internal or within-parent resources, and c) a focus on external resources. Parents suggested other resources that they thought would help them when making decisions about their children’s education.
Keywords
Advocacy, Decision Making, Parent Attitudes, Parent Teacher Cooperation, Preschool Children, Resource Materials
References

Ainbinder, J. G., Blanchard, L. W., Singer, G. H. S., Sullivan, M. E., Powers, L. K., Marquis, J. G., & Santelli, B. (1998). A qualitative study of parent to parent support for parents of children with special needs. Journal of Pediatric Psychology, 23 (2), 99-109. DOI: https://doi.org/10.1093/jpepsy/23.2.99

Alsem, M. W., Siebes, R. C., Gorter, J. W., Jongmans, M. J., Nijhuis, B. G. J., & Ketelar, M. (2013). Assessment of family needs in children with physical disabilities: Development of a family needs inventory. Child: Care, Health and Development, 40 (4), 498-506. doi:10.1111/cch.12093. DOI: https://doi.org/10.1111/cch.12093

Ayvazoglu, N. R., Oh, H., & Kozub, F. H. (2006). Explaining physical activity in children with visual impairments: A family systems approach. Exceptional Children, 72, 235-248. DOI: https://doi.org/10.1177/001440290607200207

Bailey, D. B., Hebbeler, K., Scarborough, A., Spiker, D., & Mallik, S. (2004). First experiences with early intervention: A national perspective. Pediatrics, 113 (4), 887-896. DOI: https://doi.org/10.1542/peds.113.4.887

Bakermans-Kranenburg, M. J., van IJzendoorn, M. H., Bokhorst, C. L., & Schuengel, C. (2004). The importance of shared environment in infant-father attachment: A behavioral genetic study of the attachment Q-sort. Journal of Family Psychology, 18, 545-549. DOI: https://doi.org/10.1037/0893-3200.18.3.545

Breitkreutz, R., Wunderli, L., Savage, A., & McConnell, D. (2014). Rethinking resilience in families of children with disabilities: A sociological approach. Community, Work & Family, 17 (3), 346-365. Retrieved from http://dx.doi.org/10.1080/13668803.2014.893238 DOI: https://doi.org/10.1080/13668803.2014.893228

Brown, S. R. (1980). Political subjectivity: Applications of Q methodology in political science. New Haven, CT: Yale University Press.

Brown, J. D., Moraes, S., & Mayhew, J. (2005). Service needs of foster families with children who have disabilities. Journal of Child and Family Studies, 14 (3), 417-429. DOI: https://doi.org/10.1007/s10826-005-6853-3

Burke, M. M., & Hodapp, R. M. (2014). Relating stress of mothers of children with developmental disabilities to family-school partnerships. Intellectual and Developmental Disabilities, 52 (1), 13-23. doi:10.1352/1934-9556-52.1.13. DOI: https://doi.org/10.1352/1934-9556-52.1.13

Caldera, Y. M. & Lindsey, E. W. (2006). Coparenting, mother-infant interaction, and infant parent attachment relationships in two-parent families. Journal of Family Psychology, 20, 275-283. DOI: https://doi.org/10.1037/0893-3200.20.2.275

Coogan, J., & Herrington, N. (2011). Q methodology: An overview. Research in Secondary Teacher Education, 1 (2), 24-28.

Creswell, J. W., & Poth, C. N. (2017). Qualitative Inquiry & Research Design: Choosing fromFive Approaches (4th Ed.). Thousand Oaks, California: Sage Publications, Inc. Fish, W. (2008). The IEP meeting: Perceptions of parents of students who receive special education services. Preventing School Failure, 53 (1), 8-14. DOI: https://doi.org/10.3200/PSFL.53.1.8-14

Freedman, R. I. & Boyer, N. C. (2000). The power to choose: Supports for families caring for individuals with developmental disabilities. Health and Social Work, 25, 1-10. DOI: https://doi.org/10.1093/hsw/25.1.59

Gane, L. W., Iosif, A. M., Flynn-Wilson, L., Venturino, M., Hagerman, R. J., Seritan, A. L. (2010). Assessment of patient and caregiver needs in fragile x-associated tremor/ataxia syndrome by utilizing Q-sort methodology. Aging and Mental Health, 14, 1000-1007. DOI: https://doi.org/10.1080/13607863.2010.501066

Garwik, A. W., Patterson, J. M., Bennett, F. C., Blum, R. W. (1998). Parents' perceptions of helpful vs. unhelpful types of support in managing the care of preadolescents with chronic conditions. Archives of Pediatric and Adolescent Medicine, 152, 665-671. DOI: https://doi.org/10.1001/archpedi.152.7.665

Granger, S., des Rivieres-Pigeon, C., Sabourin, G., & Forget, J. (2010). Mothers’ reports of their involvement in early intensive behavioral intervention. Topics in Early Childhood Special Education, 20 (10), 1-10. doi:10.1177/0271121410393285. Retrieved from http//tecse.sagepub.com DOI: https://doi.org/10.1177/0271121410393285

Heiman, T. (2002). Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 14, 159-171. DOI: https://doi.org/10.1023/A:1015219514621

Hess, R. S., Molina, A. M., & Kozleski, E. B. (2006). Until somebody hears me: parent voice and advocacy in special educational decision making. British Journal of Special Education, 33 (3), 148-157. DOI: https://doi.org/10.1111/j.1467-8578.2006.00430.x

Hiebert-Murphy, D., Trute, B., & Wright, A. (2011). Parents’ definition of effective child disability support services: Implications for implementing family-centered practice. Journal of Family Social Work, 14, 144-158. doi:10.1080/10522158.2011.552404 DOI: https://doi.org/10.1080/10522158.2011.552404

Hughes, M. T., Valle-Riestra, D. M., & Arguelles, M. E. (2008). The voices of Latino families raising children with special needs. Journal of Latinos and Education, 7 (3), 241-257. DOI: https://doi.org/10.1080/15348430802100337

Individuals with Disabilities Education Act Amendments of 1997, 20 U.S.C. 1400. Retrieved from http://www2.ed.gov/policy/speced/leg/idea/idea.pdf

Individuals with Disabilities Education Improvement Act of 2004, 20 U.S.C. 1400 et seq. Retrieved from http://idea.ed.gov/

Ingber, S., Al-Yagon, M., & Dromi, E. (2010). Mothers' involvement in early intervention for children with hearing loss: The role of maternal characteristics and context-based perceptions. Journal of Early Intervention, 32 (5), 351-369. DOI: https://doi.org/10.1177/1053815110387066

Kalyanpur, M., Harry, B., & Skrtic, T. (2000). Equity and advocacy expectations of culturally diverse families’ participation in special education. International Journal of Disability, Development and Education, 17 (2), 119-136. DOI: https://doi.org/10.1080/713671106

Lake, J. F. & Billingsley, B. S. (2000). An analysis of factors that contribute to parent-school conflict in special education. Remedial and Special Education, 21 (4), 240-251. DOI: https://doi.org/10.1177/074193250002100407

Litt, J. S. & McCormick, M. C. (2015). Care coordination, the family-centered medical home, and functional disability among children with special health care needs. Academic Pediatrics, 15 (2), 185-190. DOI: https://doi.org/10.1016/j.acap.2014.08.006

Mandell, D. S. & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11, 111-122. DOI: https://doi.org/10.1177/1362361307077506

McDonnall, M. C., Cavenaugh, B., S., & Giesen, J. M. (2010). The relationship between parental involvement and mathematics achievement for students with visual impairments. The Journal of Special Education, 20 (10), 1-12. doi:10.1177/0022466910365169. Retrieved from http://journalofspecialeducation.sagepub.com

McKeown, B. & Thomas, D. (1988). Q methodology. Newbury Park, CA: Sage Publications. Miedel, W. T., & Reynolds, A. J. (2000). Parent involvement in early intervention for disadvantaged children: Does it matter? Journal of School Psychology, 37 (4), 379-402. DOI: https://doi.org/10.1016/S0022-4405(99)00023-0

Montes, G., Halterman, J. S., & Magyar, C. I. (2009). Access to and satisfaction with school and community health services for US children with ASD. Pediatrics, 124, 407-413. DOI: https://doi.org/10.1542/peds.2009-1255L

Olivos, E. M. (2009). Collaboration with Latino families: A critical perspective of home-school interactions. Intervention and School and Clinic, 45 (2), 109-115. DOI: https://doi.org/10.1177/1053451209340220

Olmsted, M.G., Bailey, D.B., Raspa, M., Nelson, R.E., Robinson, N. D., Simpson, M.E. & Guillen, C. (2010). Outcomes reported by Spanish-speaking families in early intervention. Topics in Early Childhood Special Education, 20 (10), 1-11. DOI: https://doi.org/10.1177/0271121409360827

Rahi, J. S., Manaras, I., Tuomainen, H., & Hundt, G. L. (2004). Meeting the needs of parents around the time of diagnosis of disability among their children: Evaluation of a novel program for information, support, and liaison by key workers. Pediatrics, 114, 477-482. doi:10.1542/peds.2004-0240 DOI: https://doi.org/10.1542/peds.2004-0240

Roberts, W. L. (1986). Nonlinear models of development: An example from the socialization o competence. Child Development, 57, 1166-1178. DOI: https://doi.org/10.1111/j.1467-8624.1986.tb00445.x

Sexton, D., Snyder, P., Wadsworth, D., Jardine, A., & Earnest, J. (1998). Applying Q methodology to investigations of subjective judgments of early intervention effectiveness. Topics in Early Childhood Special Education, 18, 95-122. DOI: https://doi.org/10.1177/027112149801800205

Sheppard, M. E. & Vitalone-Raccaro, N. (2016). How physicians support children with disabilities and their families: Roles, responsibilities and collaborative partnerships. Disability and Health Journal, 9, 692-704. DOI: https://doi.org/10.1016/j.dhjo.2016.05.007

Sloper, P., Greco, V., & Beecham, J., & Webb, R. (2006). Key worker services for disabled children: What characteristics of services lead to better outcomes for children and families? Child: Care, Health & Development, 32 (2), 147-157. DOI: https://doi.org/10.1111/j.1365-2214.2006.00592.x

Spann, S. J., Kohler, F. W., & Soenksen, D. (2003). Examining parents' involvement in and perceptions of special education services: An interview with families in a parent support group. Focus on Autism and Other Developmental Disabilities, 18 (4), 228-237. DOI: https://doi.org/10.1177/10883576030180040401

Stephenson, W. (1953). The study of behavior: Q-technique and its methodology. Chicago, IL: University of Chicago Press.

Stanley-Gane, L., Flynn, L., Neitzel, K., Cronister, A., & Hagerman, R. J. (1996). Expanding the role of the genetic counselor. American Journal of Medical Genetics, 64 (2), 382-387. DOI: https://doi.org/10.1002/(SICI)1096-8628(19960809)64:2<382::AID-AJMG30>3.0.CO;2-9

Tetreault, S., Blais-Michaud, S., Deschenes, P. M., Beaupre, P., Gascon, H., Boucher, N., & Carriere, M. (2012). How to support families of children with disabilities? An exploratory study of social support services. Child & Family Social Work, 19, 272-281. doi:10.1111/j.1365-2012. DOI: https://doi.org/10.1111/j.1365-2206.2012.00898.x

00898.x Tractinsky, N., & Jarvenpaa, S. L. (1995). Information systems design decisions in a globa versus domestic context. Management Information Quarterly, 19 (4), 507-534. DOI: https://doi.org/10.2307/249631

Trainor, A. A. (2010a). Reexamining the promise of parent participation in special education: An analysis of cultural and social capital. Anthropology & Education Quarterly, 44 (3), 245-263. DOI: https://doi.org/10.1111/j.1548-1492.2010.01086.x

Trainor, A. A. (2010b). Diverse approaches to parent advocacy during special education home school interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31 (1), 34-47.van Exel, J. (2005). Q methodology: A sneak preview. Retrieved from http://qmethod.org/articles/vanExel.pdf DOI: https://doi.org/10.1177/0741932508324401

Vanegas, S. B., & Abdelrahim, R. (2016). Characterizing the systems of support for families of children with disabilities: A review of the literature. Journal of Family Social Work, 19 (4), 286-327. Retrieved from http://dx.doi:org/10.1080/10522158.2016.1218399 DOI: https://doi.org/10.1080/10522158.2016.1218399

Wagner, J. Y., & Katsiyannis, A. (2010). Special Education litigation update: Implication for school administrators. NASSP Bulletin, 94 (1), 40-52. DOI: https://doi.org/10.1177/0192636510372251

Wang, M., & Brown, R. (2009). Family quality of life: A framework for policy and social service provisions to support families of children with disabilities. Journal of Family Social Work, 12, 144-167. doi:10.1080/10522150902874842. DOI: https://doi.org/10.1080/10522150902874842

Watts, S., & Stenner, P. (2012). Doing Q methodological research: Theory, method, an interpretation. Thousand Oaks, CA: Sage Publications Inc. DOI: https://doi.org/10.4135/9781446251911

White, N. & Hastings, R. P. (2004). Social and professional support for parents of adolescents with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 17 (3), 181-190. DOI: https://doi.org/10.1111/j.1468-3148.2004.00197.x

Zionts, L. T., Zionts, P., Harrison, S., & Bellinger, O. (2003). Urban African-American families’ perceptions of cultural sensitivity within the special education system. Focus on Autism and Developmental Disabilities, 18, 41-50. DOI: https://doi.org/10.1177/108835760301800106

There are 50 references in total.
How to Cite
Ruiz, M. I., Flynn-Wilson, L., Giovingo, L., & Wilson, P. G. (2019). But… How Helpful is That? Parents’ Views on the Helpfulness of Selected Resources When Making Educational Decisions for Their Young Children with Disabilities. Journal of the American Academy of Special Education Professionals, 14(2), 130-148. https://doi.org/10.64546/jaasep.399

Spring/Summer 2019

Article Information

  • Article Type Articles
  • Submitted May 3, 2019
  • Published June 15, 2019
  • Issue Spring/Summer 2019
  • Section Articles
  • File Downloads 0
  • Abstract Views 5
  • Altmetrics
  • Share
Download data is not yet available.