In early March (It feels about 4 1/2 years ago, but really about 3 weeks at this point), I attended the Gatlinburg Conference– a conference that focuses on “Research and Theory in Intellectual and Developmental Delays”. Despite its name, it was not held in Gatlinburg, TN, but this year was held in San Antonio, TX. Apparently, there’s a wonderful history of how a bunch of people found common research interests one day while they were in Gatlinburg, and it’s been a tradition ever since. There were people from around the world who research in the area of autism and IDD and other syndromes that I am ashamed to admit that I had never heard of. As a newbie, I was often asked, “Is this your first Gatlinburg?”- and I had to answer “Yes”- but it won’t be my last.
At this conference were psychologists, psychiatrists, and neurologists. I was one of the few teacher educators there- and I had a wonderful time wandering in and out of research topics and data that inform what I do and what I tell my students who are future teachers, but I can’t actually do myself. There were genetic manipulation of mice to determine effects of medication on “autistic mice”, hospital interventions and large-scale statistical modeling that crunch numbers in way that I can only admire. Throughout it all was a profound sense of respect- for children, for families.
Throughout the month of April, as part of Autism Awareness Month, in addition to my Blue Light Bulb, I’ll be sharing tidbits of research that I’ve found- about kids, about interventions, about families.
But to start it off- I wanted to share my research that I and Dr. Lynnette Henderson from the Vanderbilt Kennedy Center presented on IEPs.
And I want to emphasize that this is the FIRST wave of research- we would LOVE for parents AND teachers to participate in the ongoing study… PLEASE click HERE and tell us what you think about the IEP process…
Previous research has found that parental satisfaction with both the process and the outcomes of the IEP is highly related to professional etiquette and the parents’ level of education (Miles-Bonart, 2002), as well as the quality of ongoing academic achievement data that has been shared previously with parents (Green & Shinn, 1994).
Parents of children with physical or health impairments reported having significantly less satisfaction with their child’s IEPs than other areas of special education (Miles-Bonart, 2002), a finding consistent with reports that the more complicated a child’s educational needs, the less likely parents of children with autism were to report satisfaction with their child’s special education program (Bitterman et al, 2008).
Such satisfaction levels among parents of children with autism were also found to be inversely related to the amount of time that a child had been in special education (Spann, Kohler, & Soenksen, 2003).
As part of a larger survey examining parental satisfaction levels regarding the IEP, we sought to tease out factors that might explain parental satisfaction with their child’s IEP. Because of the high levels of correlation, we’ve chosen to look at the relationship of parental satisfaction to:
“To what extent do you feel decisions were made among the school personnel before the IEP meeting?”
Parents of student with ASD were asked to complete an online survey of their perceptions of the IEP meeting, and the planning process, their preparations for an IEP meeting, and their general satisfaction with the planned IEP and the actual educational services provided.
Study data were collected and managed using REDCap electronic data capture tools hosted at Vanderbilt University. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies, providing:
The 24 Caucasian parents who provided this survey data
- spoke English,
- were in their 30’s and
- had some college education
The importance of parental involvement has been recognized for 35 years since PL 94-142. IDEIA 2007 continues to legislate the collaborative intent of the Individualized Education Plan (IEP) and the importance of addressing parental and student goals and concerns during meetings.
Despite this emphasis, parent respondents in our sample felt that decisions were made among the school personnel before the IEP meeting more than expected (M= 74.71, 95% CI 63.26-86.16).
The extent to which parents perceived that decisions were made before the meeting was not related to the child’s social, communicative or behavioral characteristics, but was inversely related to the child’s age. Relevant qualitative comments from the survey included:
- The ‘system’ makes the decisions and parents do not have an equal voice when there are 10 school personnel and a parent in the IEP. They just increase their numbers if you increase yours.
- In regards to the IEP process, placement was predetermined, there is nothing offered in (County schools) but a 12 hour a week special education preschool classroom, and every child is expected to fit into this program. A program is not designed for each child. Best practices are not even close to being met and when questioned administrators will remark about current research but are not able to state what research or provide a copy to support their view. They also could not provide me with any data on the efficacy of the programs offered for ASD kids or even agree to keep daily data on my child. No matter what I asked or offered the team of 9 employees present would stick together supporting their predetermined planned.
- The younger the child, and the fewer IEPs the parents had participated in, the more parents perceived that decisions were made before the meeting.
- A finding that does not support the study of Spann, Kohler, & Soenksen, 2003
- Parents who had sought out advocacy training perceived themselves to be less excluded from the decision-making process.
- Experience with IEPs may be the driver of these results, since other correlates included consulting the student, and the student attending the IEP meeting, which tend to happen with older students.
- The perception that decisions are made without parental input tended to correlate with other aspects of parent empowerment and satisfaction in the parent-school collaboration.
- Not only does education of parents correlate with parental IEP satisfaction (Miles-Bonart, 2002), but so does education of the professionals.
- Perhaps school personnel with a more thorough understanding of the needs of students with ASD may be more comfortable seeking information from parental input and observation and may be more convinced of the benefits of parental participation in the IEP.
- School system personnel can improve parental satisfaction with the IEP and its effectiveness, as well as build long-term relationships by educating parents of young children and suggesting advocacy training during early IEP interactions, as well as communicating with parents of young children prior to the meeting
This study is limited in its generalization by the homogeneous preliminary sample. Data collection continues.
What was very amusing were the differences in the “So what?” implications that Lynnette and I reached. Her “solution” was for school districts to encourage parents to seek out advocacy groups. Me- knowing school systems- suggested that it might be wiser for schools to provide information up front and to provide additional time and information to parents of children who are newly diagnosed with ASD. While parental satisfaction might be increased with an advocate present, I have a feeling that school satisfaction would not… but it’s just a hunch.
So… PLEASE if you’re a teacher, or a parent of a child with ASD- PLEASE go to the web site: http://tinyurl.com/mla3wm and tell us what you think! Your responses are anonymous and no results can ever be traced back to you.