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

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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