Developing the self-determination of children and young people with intellectual disabilities in schools: A systematic review of the literature.

BACKGROUND: Self-determination is associated with lifelong positive outcomes. Students with intellectual disabilities typically have lower self-determination than their peers. Universal basic education access offers schools the opportunity to rectify this disparity. This is the first systematic review investigating the school-based practices that target self-determination development for students with intellectual disabilities. METHOD: The review follows the PRISMA guidelines, spanning five databases (ProQuest databases, EMBASE, Scopus, Sage Journals, Taylor and Francis Online) from 2006 to 2021. RESULTS: Across the 18 studies, the most used practice is the SDLMI. Research focuses on United States-based transition-aged students with mild to moderate intellectual disabilities. Social validity tends to be assessed in summative and informal ways. Students are not generally involved in decision-making about practices and individualisation of support. CONCLUSIONS: Self-determination development for this population can begin before puberty. Future research should critically investigate social validity and holistic integration of student self-determination learning opportunities throughout the pedagogical cycle.

"I am not a number!" Opinions and preferences of people with intellectual disability about genetic healthcare.

There is limited research exploring the knowledge and experiences of genetic healthcare from the perspective of people with intellectual disability. This study, conducted in New South Wales (Australia), addresses this gap. Eighteen adults with intellectual disability and eight support people were interviewed in this inclusive research study. The transcribed interviews were analysed using inductive content analysis. The findings were discussed in a focus group with ten adults with intellectual disability and in three multi-stakeholder advisory workshops, contributing to the validity and trustworthiness of the findings. Five main themes emerged: (i) access to genetic healthcare services is inequitable, with several barriers to the informed consent process; (ii) the experiences and opinions of people with intellectual disability are variable, including frustration, exclusion and fear; (iii) genetic counselling and diagnoses can be profoundly impactful, but translating a genetic diagnosis into tailored healthcare, appropriate support, peer connections and reproductive planning faces barriers; (iv) people with intellectual disability have a high incidence of exposure to trauma and some reported that their genetic healthcare experiences were associated with further trauma; (v) recommendations for a more respectful and inclusive model of genetic healthcare. Co-designed point-of-care educational and consent resources, accompanied by tailored professional education for healthcare providers, are required to improve the equity and appropriateness of genetic healthcare for people with intellectual disability.