Background

1. 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.