Matrix Parents Presents: Expanding Parents' Power in Special Education and Beyond

Matrix Parent Network and the Marin Center for Independent Living funded and supported the production of this podcast. 

If you are the parent of a child with a disability you have very likely experienced a feeling that you missed something when you walk out of an IEP meeting.  Many parents report that schools seem to go through the steps of the IEP but what comes out is a muddled mix of goals, accommodations and services.

Parents also report that they don't feel like they are true members of their IEP team, that the IEP document they are asked to sign was developed by school staff with little or no input from those who know the child the best.

This episode explores what parent participation really means, that the definition goes beyond school to encompass the child's entire life, in and out of school. 

Research indicates that parents of children with disabilities have strong desires for their children to work on skills at home and in the community versus in school. 

Other parents report focusing on involvement outside of school as a strategy to escape the anxiety and confines of school expectations and potential feelings of judgement from their special education teams. 

article referred to in the episode:

https://pmc.ncbi.nlm.nih.gov/articles/PMC12356156/

Thanks to  soundimage.org for the free access to the AI generated music used in this podcast (https://soundimage.org/) 

Transcript

A very common issue parents of students with disabilities report to me is that they often leave IEP meetings, or after conversations with school staff, feeling like there was something they missed.  It’s not exactly a feeling of being gaslighted, but there is a component of not being able to pick up something vital, something missing.

I almost always assure them they didn’t miss anything, that there is a sort of cultural gaslighting that takes place in communications with schools that is not necessarily purposeful, but has the same effect as if it was.  

To help reinforce the idea that you are not nuts, I looked for a research article that quantifies, or at least qualifies the reality most parents face.  If you are the parent of a child with a disability, I am pretty sure you will recognize the truth of the research and be assured at least that your reality is in actuality, reality.

The article I am using does not actually focus on parents’ experiences but uses them as a reason for their research.  The research addresses the conceptual models that educators use to guide decisions that address parents’ involvement in their children’s education.  It explores different models and makes recommendations for changes.  I am including some of the recommendations but not using the research that leads to it.

As clarification, the models that guide how schools work with parents contain all of the things most general ed parents consider to be typical of school involvement; teacher conferences, volunteering, observing classrooms, etc.  School district guidelines and rules around parent involvement make a circuitous route onto school sites, but they do get there from research eventually.

The article is titled, “Expanding the Concept of Parent Involvement to Special Education: Considerations for Inclusivity”

 The authors, in the introduction, write,

“Parents of children with disabilities are distinctly involved with their children inside and outside of school as they partake in special education procedures and support individualized child needs. Yet standards for parent involvement are largely designed for parents of children without disabilities”.

Later, they describe parent involvement for all students, “…the traditional concept of parent involvement has received criticism for being overly school-centric and placing the onus on parents to adapt and meet school standards for participation, thus making them passive participants and relegating relational power to schools.  Emphasis on school-based forms of participation and encouragement for parents to modify their behaviors and values rather than a push for systemic or institutional change from schools”. 

And “in general education, parent involvement is primarily viewed from an achievement standpoint, where parents’ involvement efforts support children’s school outcomes; in contrast, parent involvement in the context of a child’s disability often associates parents’ involvement with their adherence to the procedural aspects of the special education system and fulfillment of procedural mandates”

You have very likely experienced this in your interactions with IEP teams in particular, the need to get through the process, complete all of the boxes, and spend very little time actually talking about your concerns and goals for your child.  

But In accordance with the Individuals with Disabilities Education Act (IDEA), parents are expected to be involved in their children’s education services and actively participate on their child’s Individualized Education Program (IEP).  

The authors add, “In principle, although IDEA emphasizes family participation, it fails to enumerate exact parent roles, leaving school teams to determine strategies for participation and the degree to which parents are involved, often resulting in practices that favor the school. 

For instance, parent IEP meeting attendance is strongly emphasized, yet it is common practice for special educators and service providers to prepare the IEPs before meetings. To schools, this practice increases efficiency, but it consequently positions the school team to control special education decisions; by the time the meeting begins, there is often little opportunity for parent input or new ideas to be included.”

They continue, “Existing practices place enormous burden on parents and require them to fight for both their child’s services and their own place in education system, including procedures and timelines that lack transparency and dense documents with unfamiliar, technical terms. Such processes further constrain parents’ involvement by requiring them to possess specific economic and cultural capital to participate and advocate effectively for their child on the special education team  Parents may already struggle to participate actively and confidently in meetings given the unfamiliar and complex nature of special education procedures. They must learn to navigate a highly specialized system”.

Members from the school team, such as special educators and administrators, tend to speak more in meetings, while families may be positioned as passive participants and provided few opportunities by the school team to make contributions. 

One possible explanation for this gap is tenuous home–school relationships. Although schools report that they desire the involvement of parents in special education, parents overwhelmingly report negative experiences, often feeling excluded and powerless on school teams. Schools’ wording on special education documents lacked terminology that supported parents as equal, active members of the school team and instead indicated that parents were outside sources of information. 

These findings suggest that existing school practices may relegate parents to roles as “token participants” in their children’s education, where they have reduced power and influence.  

Research has found that if parents assert themselves and push to have an active presence at school, schools may view this as adversarial, annoying, threatening, or overinvolvement. Active parent participation challenges hierarchical power dynamics where schools have historically retained control.   

In situations where tensions escalate and parents and school teams disagree over educational decisions without compromise, they may move to a due process hearing, where the matter is settled by an independent officer through mediation or, in some cases, state or federal court. This is a long, arduous process that requires parents to have substantial, additional economic and cultural capital to navigate successfully and have their voices heard. 

The following excerpts are from later in the article where the authors discuss ways to improve the situation. 

Expansions to conceptual work should consider further accounting for contexts beyond school. Scholars have suggested shifting involvement perspectives from children’s schooling to children’s learning more broadly.  

Research in general education has indicated that forms of involvement outside of school may take more subtle, intrinsic forms, such as parenting styles or individual family factors, and may have a comparable, if not stronger, influence on child outcomes. 

Parents themselves may view involvement as their behaviors at home or in the community, in contrast to schools, which often consider parents’ involvement as it relates to school-based activities.  Research on parents of children with and without disabilities has found that parents felt their involvement did not stop at the school environment but rather continued into the home. 

Parents of children with disabilities indicate stronger desires for their children to work on skills at home and in the community versus in school. Other parents report focusing on involvement outside of school as a strategy to escape the anxiety and confines of school expectations and potential feelings of judgement from their special education teams. 

Everyday interactions with their children, such as providing moral support or living by example can be important opportunities for all parents to support their children’s learning robustly and transmit distinct, useful skills that may not be directly related to the content of school (i.e., funds of knowledge).  Understanding these involvement opportunities beyond school is particularly critical for parents of children with disabilities. 

For instance, in a study of parents of children in early intervention services, parents reported participation with their children in activities that supported their developmental goals, such as taking walks, engaging in social interactions, guiding emotion regulation, and steering household routines and chores.

Parents of children with disabilities often spend substantial time coordinating their children’s services researching and gaining knowledge, attending parent trainings and support groups and acting as important models for their children’s development. Compared with parents of children without disabilities, these families’ lives are often exceptionally child-driven, with parents spending additional time and effort modifying family life to be aligned with their child’s support needs. 

American schools may sometimes assume that all parents share the same knowledge, understanding, and response to disability and parenting expectations as schools do and that all families contribute and equally leverage social and cultural capital.  However, this is far from the case: There is no one-size-fits-all approach to family involvement and research suggests that more nuanced approaches are needed. 

Parents of children with disabilities have reported lower perceptions of the usage of family-centered approaches in their child’s services than service providers, suggesting a need for practitioners to better understand parents and individual family characteristics to ensure authentic incorporation of family contexts.

Having an effective, functional IEP team is critical to high-quality special education services; thus, power imbalances and organizational issues should be addressed.  Schools can shift to view each IEP as a unique opportunity to build home–school relationships and shift away from a “battleground” approach to partnerships. 

This teamwork and support should empower parents and promote their existing values and expertise. In past perspectives of involvement and partnerships, parent support, although perhaps well-intentioned, was sometimes used to control parent behavior and guide it to meet school standards of involvement.  Schools must be careful to avoid a savior perspective that focuses on “teaching” parents to be involved and work to understand parents’ strengths, existing expertise, and contributions to their children’s lives; this includes championing parent perspectives, advocating for parent input on the special education team, and guiding parent capacity building.