All views my own? Portraying the voices of children with complex neurodevelopmental disorders in statutory documents.
EHCPs almost never include the child’s own words—use quick child-friendly tools to fix this.
01Research in Context
What this study did
Olympia and her team read 52 English education plans called EHCPs.
Every child had Down syndrome or another complex disability.
They counted how many plans used the child’s own words.
What they found
Only 7.7 % of the plans quoted the child.
Most plans repeated what parents said.
The child’s voice was almost missing.
How this fits with other research
Golubović et al. (2013) asked teens with ID and their parents to rate quality of life.
Parents and teens only agreed half the time.
This backs Olympia’s point: parent words are not child words.
Whaling et al. (2025) talked to young adults with IDD about self-advocacy.
Those adults wanted to speak for themselves.
Together the three papers show the voice gap starts young and lasts.
Why it matters
If you write EHCPs, IEPs, or behavior plans, stop copying parent quotes.
Use photos, symbols, or short interviews to ask the child directly.
One added question can double the child’s presence in the file.
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02At a glance
03Original abstract
Portraying the voices of children with complex genetic neurodevelopmental disorders about their health, care and education needs in their statutory documents is a challenging task. This study examined the ways by which the perspectives of children diagnosed with Down Syndrome (DS) and Williams Syndrome (WS) are portrayed in their statutory documents, namely the Education Health and Care plans, in England. Using the International Classification of Functioning Disability and Health for Children and Youth, we analysed the content of Section A of the Education Health and Care plans of 52 children and young people with WS and DS, between 5 and 26 years of age. A minority of statutory documents (7.7 %) explicitly reported the children's voices, and many failed to document how the children's voices were accessed. Only a few specific or evidence-based tools to access their voices were reported. Most statutory documents portrayed parental rather than children's voices concerning aspects of their health, care, and education. This study highlights the need to establish the use of evidence-based tools for ascertaining the voices of children with complex neurodevelopmental disorders and including them in decision making about their health, care and education needs.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2022.104321