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Parents and guardians may not know that students can participate in their Individualized Education Program (IEP) team meetings at any age and not just during post-secondary transition planning in high school. In describing the IEP team, the Individuals with Disabilities Education Act states “the public agency must ensure that the IEP Team for each child with a disability includes … [w]henever appropriate, the child with a disability” (IDEA, 2004).
Appropriate participation will vary at any given time for an individual student. This provision is an opening, however, to engage younger students in their education in order to foster self-advocacy skills throughout their schooling. Nothing about us without us can and should be established as early as possible if only to avoid the horrifying scenario of a student being invited to the IEP table for the first time at 16 and discovering a team of adults has been talking about them, behind their back, for years.
Student participation in the IEP process does require disability disclosure. Once establishing with them why they have an IEP, caregivers can tell children about their specific IEPs (or 504 Plans) in an age-appropriate way. Our family* began talking about “the contract with the school” as early as kindergarten when our older son noticed that he had accommodations other students did not. As young as five, children can identify “I like this/I don’t like that” about school. Making clear that the adults are there to work with them is a solid foundation to advocate from that will serve them for their whole lives
In the Meeting
Let them know the conversation is taking place and invite them to participate however they may be comfortable doing so. Children may visit the meeting space ahead of time. Previewing who will be sitting around the table and their roles is important. If the principal is to be present, for instance, the child should know they are there as a support for other grownups and not because the student is in trouble.
For very young students or those who are not yet at ease communicating in a meeting with the team, stopping by to say hello or being there to greet staff as they arrive is a good start. As students are ready, they may directly share what is working at school and what they would like to be different. They may be able to stay for longer periods to hear progress updates and pose goals. Keeping the focus strengths-based and solution oriented during their participation will set the tone for the rest of the meeting. The team is talking about a whole person, not a series of objectives to be met.
The IEP team can talk about standard scores and percentiles very abstractly – and without parents’ concerns being heard. The impacts of relative weaknesses in working memory and processing speed are made real when a child tells their teachers, “I have a hard time keeping all the ideas in my head” and “[The aide] made me mad when she kept telling me to do something over and over in front of my friend and she didn’t wait.” Everyone is more inclined to listen and want to help. In this case, my first grader was then able to offer feedback on the team’s ideas and suggestions.
Students who are not comfortable at the table can be interviewed separately to gather their input. This can be recorded (with consent) and played for the team or sent ahead of time to help inform the conversation. Their voice in the room, however it is shared, is a powerful tool. Others may want to write or dictate a letter to the team, draft slides to present themselves or be shared on their behalf, or create an art project to capture their life at school.
In the IEP
Post-secondary transition planning should incorporate educational preferences, employment, and life in the community (IDEA, 2004). Though obviously subject to change, young students often have a sense of something they are interested in learning about, a possible career, how they would like to spend their spare time, etc. Even without a dedicated space on the IEP form, a child’s vision can be incorporated through parent input developed with the child. A vision can encompass the next year, several years out, and/or extend into adulthood. Transition periods should be highlighted (e.g., “In middle school, I want to…”). Practicing self-determination conversations early helps to ease pressure around what may feel very high stakes later in their education.
Accommodations are a good entry point for younger students into their IEPs. If they have sensory sensitivities, for instance, they are the experts on when they may require accommodations to successfully participate and what will work best in those situations. Starting from existing accommodations, we ask our children what they are currently accessing, what they are not using any more, and what else may help.
For students not yet ready to participate in their IEP meetings, there can be a self-advocacy goal encompassing understanding themselves as a learner and being able to share what they need in different settings. Older elementary students may have objectives to partner with providers on developing personal goals. My sixth grader has given input when crafting a self-report form for data collection.
- Treat IEP development like a process rather than a one-off conversation. Students can then be included throughout its crafting.
- Practice. Smaller clinical discussions and informal meetings with one or two adults are less daunting than annual meetings with everyone present. Having the student email the staff about issues is another means to practice self-advocacy. When a proposal came up in a larger team meeting that we suspected our fifth grader would not want to have implemented, he wrote (with support) to the special educator to ask for time to work through his concerns. They were able to come up with a different plan together.
- Encourage staff to ask the student directly for input during the year to familiarize the adults with including students in decision making. When a teacher was unsure how our child would respond during a lesson about autism acceptance, we had her ask him if he wanted to be present or not. While being clear he did not need to self-disclose his autism, choosing to participate in class discussion about autism among his kindergarten peers normalized neurodivergence for all of them from the start.
- Seek other opportunities for children to practice advocating for what they care about. My then-second grader was able to attend a community meeting about a town playground rebuild project to lobby for certain equipment, for instance.
- Meet children where they are. Saying no or sharing that they are not yet comfortable participating is self-advocacy, too.
Ultimately, self-awareness and self-advocacy are critical skills for autistic people throughout their lives as their needs and the contexts around them change. Practicing from an early age to get their needs met empowers them in the long term to become confident, self-determined adults.
*Stories about Amanda’s children are shared with their permission.
Individuals with Disabilities Education Act, 34 C.F.R. § 00.321 (2004). https://sites.ed.gov/idea/regs/b/d/300.321
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