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.

Scoping review on communication systems used by adults with severe/profound intellectual disability for functional communication.

BACKGROUND: Adults with severe/profound intellectual disability typically face poor communication outcomes as they are often nonverbal and need their supporters to provide for their communication needs. This review aimed to identify studies focused on the communication resources people with severe/profound intellectual disability use for functional communication, and the enablers and barriers to functional communication. METHODS: Nine databases were systematically reviewed with keywords pertaining to the functional communication of adults with severe/profound intellectual disability. Out of 3427 identified articles, 12 met the inclusion criteria. Hand searches and ancestral searches identified another 4 articles. Out of the 16 articles, two did not meet the quality assessment criteria and were excluded. Thus, 14 articles were included in this review. RESULTS: The findings revealed that picture exchange communication systems is the most common communication system used to support the development of functional communication. The most common functions enabled by the communication systems were choice-making and making requests. Several barriers (e.g., individual factors related to adults with severe/profound intellectual disability, others' attitudes, behaviour and knowledge) to and enablers (e.g., accessibility and availability of the communication system, training for those supporting adults with severe/profound intellectual disability) of functional communication were identified. CONCLUSIONS: Removing the barriers and enabling functional communication is essential to developing the functional communication of adults with severe/profound intellectual disability.

"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.

The role of mobile technology in promoting social inclusion among adults with intellectual disabilities.

BACKGROUND: Mobile technology has the potential to assist adults with intellectual disabilities to initiate and maintain social connections in important areas of their lives, such as family, friends and work/volunteering. METHOD: The present study investigated how specific aspects of mobile device/app use are associated with the social inclusion of people with intellectual disabilities. The study also examined what background attributes were associated with particular patterns of mobile device/app use and social inclusion. RESULTS: The findings revealed that the use of mobile technology among adults with intellectual disabilities was positively associated with their social inclusion with family, friends and work/volunteering. There were also some key background attributes associated with participants' use of mobile technology and the extent to which mobile technology assisted their social inclusion. CONCLUSIONS: Implications for practice and policy are discussed.

The impact of self-advocacy organizations on the subjective well-being of people with intellectual disabilities: A systematic review of the literature.

BACKGROUND: A high sense of subjective well-being has been associated with more prosocial behaviours, better health, work productivity and positive relationships. The aim of this systematic review was to explore what impact self-advocacy has on the subjective well-being of people with intellectual disabilities. METHOD: The authors reviewed articles focusing on the perspectives of adults with intellectual disabilities engaged with self-advocacy groups. Searches were performed in PsychINFO, Web of Science, SCOPUS, MEDLINE and CIHNL databases, resulting in 16 articles meeting the inclusion criteria. A framework synthesis approach was used to extract data deductively based on the Dynamic Model of Wellbeing. RESULTS: While self-advocacy has a positive impact on all domains of the Dynamic Model of Wellbeing, negative impacts associated with participation in a self-advocacy group were also reported. CONCLUSIONS: The benefits of participating in self-advocacy groups on the well-being of individuals with intellectual disabilities outweigh the disadvantages.

Picture my well-being: Listening to the voices of students with autism spectrum disorder.

BACKGROUND: Student well-being, though widely researched, continues to be a poorly defined concept. Few student well-being studies focus on students with autism spectrum disorder (ASD), who may have a poorer sense of well-being compared to typically developing students. AIMS: The current study aims to explore the conceptualisation, barriers, and ways to enhance the well-being of students with ASD from their perspectives. METHODS AND PROCEDURES: Photovoice, a participatory research method was used to elicit the views of 16 high school students with ASD to explore the concept of well-being. Data analysis was conducted using a grounded theory approach. OUTCOMES AND RESULTS: Students conceptualised well-being as multidimensional, identified sensory barriers, social barriers, and barriers that were associated with learning, and several external and internal assets that could support their well-being. CONCLUSIONS AND IMPLICATIONS: To promote well-being, barriers should be mitigated, while external and internal assets developed. Researchers should also consider the use of Photovoice to enable students' meaningful participation in research studies.

"They don't have a good life if we keep thinking that they're doing it on purpose!": Teachers' Perspectives on the Well-Being of Students with Autism.

In recent years, student well-being is increasingly on the research agenda. Yet, little is known about the well-being of students with autism spectrum disorder (ASD). The current study used semi-structured interviews and sought the views of 20 high school teachers of students with ASD to investigate the concept of well-being for this group of students. Grounded theory approaches were used to analyse the data. Teachers conceptualised well-being as consisting of three domains (i.e., peer relationships, sense of safety, engagement), identified three categories of barriers (i.e., teacher's ability to effectively teach students with ASD, impact of ASD, environment), and several external and internal assets of well-being. Discussion on recommended practices for schools to enhance the well-being of students with ASD are provided.

Parents with intellectual disabilities and their perspective of peer support: "It depends on how they give it".

BACKGROUND: Parents with intellectual disabilities face particular challenges, such as lack of sufficient support with their parenting. Peers can be an important source of support for parents in the general population; however, there is a limited knowledge about peer support for parents with intellectual disabilities. The aim of this study was to explore experiences of parents with intellectual disabilities with social support with a focus on the role of peers. METHOD: Twenty-six parents with intellectual disabilities in New South Wales, Australia, took part in a semi-structured interview. RESULTS: The inductive content analysis of data revealed three main themes; this article reports on one of them-Developing interdependence. CONCLUSIONS: The source of support was less important than the way support was offered. Parents valued support offered by someone who respected them as a person and parent, and was interested in what they wanted and needed.