Evidence-informed stakeholder consultations to promote rights-based approaches for children with disabilities.
Keiko Shikako, Jonathan Lai, Paul Y Yoo and 2 others
PMID 38742042WHAT IT FOUND
Stakeholders agreed rights-based approaches matter but found academic language too broad to apply in daily practice.
Youth reported their rights are limited by inaccessible transport and stigma. Clinicians should translate policy concepts into concrete, routine-focused supports rather than relying on high-level frameworks.
Key findings
01Organizations and parents agreed on the importance of rights-based approaches but found the academic language too broad or high-level to guide actual service standards.
02Youth with disabilities perceived human rights primarily as a matter of accessibility, citing inaccessible physical spaces and transportation as constant violations.
03Parents and organizations identified the lack of integrated services as placing a heavy economic and psychological burden on families, especially women.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The youth sample was very small (n=5) and limited to one school in Montreal, restricting generalizability. Participants were recruited via convenience sampling from specific networks (government-listed orgs, social media), likely excluding families without internet access or those not engaged with advocacy groups. The photo-elicitation method excluded children who are blind or have visual impairments. The literature review explicitly excluded education-focused rights approaches, creating a gap in the evidence base presented to stakeholders. This is a qualitative consultation study, not an efficacy trial; it reports perceptions and priorities, not outcomes of any intervention.
Declared interests
Funded by Kids Brain Health Networks of Centres of Excellence and the Government of Canada. One author received a fellowship co-funded by the Centre for Innovation in Autism and Intellectual Disabilities.
The easy way to misread this
Do not interpret the stakeholders' agreement on 'rights-based approaches' as evidence that these approaches improve clinical outcomes. The study reports what people value and find important, not what works. There is no data here on whether framing therapy as a 'right' changes functional progress or quality of life.