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
Parent participation in educational decision-making is important (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)

Focus Group Sequence

Parent Focus Group #1
Guiding Questions, Review existing research

Ongoing Qualitative Analysis

After Each Meeting:
Recordings transcribed and analyzed

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 schools 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.

Professional Focus Group #1

Guiding Questions, Review existing research, and findings from Parent Group

Analysis
Microanalysis, coding, and categorizing (Strauss & Corbin, 1992/2006)

Professional Focus Group #2

Confirm themes, clarification

Findings Confirmed
Second reader, member checks

Parent Focus Group #2

Confirm findings, verify model

Trustworthiness Established
Member checks, second reader, triangulation and thick description (Creswell, 207)

Grounded Theory Model

Purpose and Hypotheses

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 elementaryaged children with autism? What are the decision-making needs of diverse parents of elementary-aged children with autism?

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

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

Future Directions
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.