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Preparing for the Journey: A Model of IEP Decision-Making for Diverse Parents of Children with Autism Jessica Oeth Schuttler, Ph.D., Steven Lee, Ph.D., Ann Turnbull, Ph.D. The University of Kansas Medical Center- Center for Child Health and Development. Background. Focus Group Sequence.

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Preparing for the Journey: A Model of IEP Decision-Making for Diverse Parents of Children with Autism

Jessica Oeth Schuttler, Ph.D., Steven Lee, Ph.D., Ann Turnbull, Ph.D.

The University of Kansas Medical Center-Center for Child Health and Development

Background

Focus Group Sequence

Ongoing Qualitative Analysis

Discussion

  • Participants describe decision-making as an ongoing, cyclical journey
  • A variety of factors impact parent decision-making, including unique characteristics of the child in comparison to peers, parent characteristics and emotions, and the influence of systems-level variables of the family, school and community
  • Parents report lack of knowledge as the greatest barrier to effective decision-making, consistent with existing research (Mitchell & Sloper, 2002)
  • Parents often feel as though they were working on the school’s terms, rather than collaborating.
  • Establishing relationships, trust, and communication were some of the most frequently mentioned facilitating factors, corresponding to findings that trust mediates parent involvement and role on the IEP team (Angell & Stoner, 2010)
  • Parents’ response repertoires include assertiveness, educating self, establishing autonomy, and deference.
  • Despite some negative experiences, parents and professionals maintained a hopeful, positive outlook on future interactions with IEP team members.
  • Parent participation in educational decision-making isimportant (Christenson & Sheridan, 2001; IDEIA, 2004).
  • Partnership in decision-making is especially important for parents of diverse culture and SES, who participate at lower rates, and for whom participation and partnership may mean different things (Epstein, 2001; Gaitan, 2004).
  • Partnering with parents of children with autism is a priority due to the complex effects of autism, a plethora of available resources and interventions, and negotiation of those resources
  • Decisions that diverse parents must make are often complex and their priorities may be different than those of the professionals with whom they work (Dunlap & Fox, 1999; Mandell & Novak, 2005)

Grounded Theory Model

Purpose and Hypotheses

IEP Decision-Making for Parents of Elementary-Aged Children with Autism in a Diverse, Urban School District in the Midwest

    • Purpose and Rationale:
    • To understand the IEP decision-making process for parents of children with autism in a diverse urban school district in the Midwest.
    • Understanding this process will inform interventions and supports to empower parents and schools to form or improve partnership practices related to IEPs.
    • Research Questions:
  • What factors (e.g. environmental, behavioral, relational) influence the decisions made by diverse parents of elementary-aged children with autism?
  • What are the decision-making needs of diverse parents of elementary-aged children with autism?

Future Directions

Participants

  • 5 parents (all mothers): 1 white, 2 African-American, 2 Latina
    • Age of child with autism: kindergarten- 5th grade
  • 5 education professionals: 1 principal, 2 SPED teachers, 2 social workers
  • All participants were constituents or employees of an urban, diverse school district in the Midwest
  • Expand the model to incorporate additional perspectives of other racial/cultural background, of fathers and other caregivers, as well as explore decision-making of families of children with other disabilities and perspectives of other school personnel.
  • School districts and policymakers should consider ways to incorporate parent perspectives in the decisions made regarding educational policy and practice.
  • Include more local-level parent information centers and parent support networks to provide the most relevant and specific information about working with LEAs.

Focus Group Structure

  • Separate focus groups for parents and professionals, met multiple times over the course of the school year, as part of a larger study.
  • Asked parallel guiding questions:
    • What decisions do you have to make in IEP meetings?
    • What factors do you consider in making decisions?
    • What are your preferences for how you might receive decision-making support?
  • Responses informed model and design of an IEP decision aid.
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