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The development of inclusive education, characterised by both universal momentum and geopolitical differences, has largely omitted children and young people with profound intellectual and multiple disabilities. For this group, access to educational opportunities at all has been slow to be won, and separation for ‘special care’ for their very high support needs is the norm. There have been advances in recognising the human rights and indeed humanity of people with the most profound intellectual disabilities, but the focus of educationalists has often been on how to foster and document fine-grained learning gains and on the specialist nature of the teaching they need. In this chapter, in contrast, the emphasis is on how the spirit of ‘Nothing about us without us’ can extend to children and young people with profound intellectual disabilities such that they are at the heart rather than periphery of the education and research process. The potential for belonging in education and research is illustrated through exploratory work on doing research inclusively with children with profound intellectual and multiple disabilities in two English special school classes. The starting point is seeking to know them from being with them in a particular way. The knowledge shared in the chapter is a mix of big picture state of the art overview and deep intersubjective knowledge/feeling created together with children with profound intellectual and multiple disabilities. The implications for future research in inclusion include the need to start from a different mindset in which belonging and reciprocity inform an asset-based approach.

The notion of sexual health has become a buzzword across various spheres, including the scientific, political, and social arenas. In a similar manner, discussions about the subject of disability and sexuality are commonly articulated through the lens of sexual health and “healthy sexualities.” Greater focus has been placed on issues of protection, abuse, sexually transmitted diseases, and unplanned pregnancy. Opportunities to talk about sex, desire, and pleasure is missing in this discourse. Drawing on my experience conducting studies about disability and sexuality, I interrogate the (over)reliance and unproblematized use in terms of the language of sexual health and healthy sexuality when it comes to people labeled/with intellectual disabilities.

Parents of children with intellectual and developmental disabilities are frequently given news that is difficult to hear and can be very traumatic. Whether receiving an initial diagnosis for their baby or learning about guardianship options for their adult child, emotional reactions almost always occur, especially because of the interdependent relationship they have with their child. These emotions likely impact the meaning parents give to information and decisions they make for their children throughout their lives. Medical, education, and other support providers sometimes assume parents can objectively receive information that frequently is communicated in a technical and clinical way. They may not give parents the time to emotionally process what they have learned, limiting their ability to care for their child. This chapter presents the results from a series of focus groups with 21 parents of children with intellectual and developmental disabilities of varying ages. The participants discussed their emotional reactions to information communicated to them about medical, educational and social concerns related to their children. In addition, they discussed how emotions impacted their information processing and sensemaking as they gave meaning to what they learned. Analysis of the results identified eight emotion-based information processing and sensemaking themes that are described in detail. The discussion section provides an enhanced explanation for emotion's role in parental information processing and sensemaking. In addition, recommendations for providers communicating emotional information to parents are provided.

In 2008, the United States passed the Higher Education Opportunity ACT (Public Law 110-315). The goal of this legislation was to increase the participation of individuals with intellectual disabilities in post-secondary education (PSE) programmes and improve the abysmal (14%) employment rate among this population. To help start PSE programmes on college campuses, many universities waived their normal enrolment requirements and established unique entrance prerequisites for these specialised programmes to increase inclusive participation. Today, there are 318 PSE programmes located across 49 of the 50 United States. Utilising a qualitative design, researchers conducted semi-focused interviews with 13 recent PSE graduates to give voice to this marginalised group of students. Researchers examined graduates' perceptions of the benefits and shortcomings of their college experiences and how the programme prepared them for life after college. Using thematic and deductive analysis, 14 themes and 3 subthemes were identified. Implications of these findings for research and practice are discussed.

This chapter describes experiences of inclusion from the perspective of young adults with Down syndrome, participating in an intensive education to work (EtW) training programme. The programme, designed by a non-governmental organisation (NGO), was conducted within a private university in Australia working in partnership with the NGO.

Drawing from a broader formative evaluation of the programme, the case study investigated how inclusion was described and understood by the student participants and individuals involved in facilitating or supporting the programme. Data collection involved conducting a focus group interview with student participants and face-to-face interviews with their teachers, a student volunteer and two university lecturers who interacted with students in the programme. The findings have been used to improve the processes of the programme currently undergoing its third iteration.

Findings suggest the need to consider at least two levels of provision in the development of equitable education for individuals participating in this programme. These include considering their voices at the level of programme design, and secondly, deliberately facilitating disability confidence programs for university students and staff.

The study notes that embedding education to employment training programs for individuals with intellectual disabilities within university settings provide them with opportunities to experience and access higher education; however, more investigations are needed to ascertain what equitable higher education in practice means for them.

The purpose of this paper is to expand upon some of the issues raised in “An evaluation of a speech and language therapy eating, drinking and swallowing service for adults with intellectual disability” (Crocker et al., 2024).

This commentary outlines considerations for multidisciplinary team working and professional roles both within and beyond the community learning disability team. It discusses models of service delivery and competency frameworks relating to eating, drinking and swallowing services.

Services should be integrated, include a broad multidisciplinary team and aim to increase competency in all contexts supporting people with eating, drinking and swallowing needs. Outcomes of service provision need to be measured outside of individualised care.

This paper broadens the discussion of quality of eating, drinking and swallowing services beyond speech and language therapy and considers a whole systems approach.

The purpose of this study is to highlight the need to develop and expand specialized support for people with ASD, examining the effect of these services on their families' quality of life. Despite efforts to promote diversity and equal opportunities for people with disabilities, Cyprus faces challenges in various levels such as in society, education, and employment. Unlike other countries, there is limited literature and data on adults with ASD in Cyprus, which prevents from forming an accurate assessment of their needs and the impact on their quality of life. Further, as a European Union Member State, Cyprus has restrictions on specialized programs and benefits, which makes it difficult to fully implement the UN Convention on the Rights of Persons with Disabilities (CRPD). This led to a lack of effective support services for adults with ASD and their families. Consequently, parents express concerns about the support that will be available for their adult children in the future. This study uses qualitative data obtained through the constant comparative method and is part of a larger project that includes both quantitative and qualitative research methods. The study presents important issues such as the positive impact of services on these adults and their families, families' concerns about specialized support and programs for people with ASD, and their relationships with their parents. The results are expected to raise awareness, promote social policy development, and improve the quality of life of people with ASD and their families in Cyprus.

The COVID-19 pandemic exacerbated food insecurity and insufficiency in the United States. However, the causes of food insufficiency among people with disabilities during the pandemic are not well understood. This paper examined how loneliness and household structure are associated with food insufficiency among working-age adults (ages 18–64) with disabilities during the COVID-19 pandemic. Using 2021 National Survey on Health and Disability data, we conducted logistic regression to estimate the association between loneliness, household composition, and food insufficiency. Measures of household structure, such as the number of children in the household and living with other adults, were not associated with food insufficiency during the COVID-19 pandemic. Secondary analyses found that loneliness had a strong association with food insufficiency for those who live alone. Respondents who lived alone and reported feeling lonely had the highest odds of being food insufficient during the pandemic. Our findings indicate that in addition to household structure, it is important to assess psychosocial well-being, such as measures of loneliness, when examining food insufficiency among working-age adults with disabilities.

There is a paucity of empirical research on poetry pedagogy within inclusive higher/post-secondary education programmes for students with intellectual disabilities. This chapter goes some way to address this omission by presenting an investigation of poetry pedagogy as informed by university students of the Trinity Centre for People with Intellectual Disabilities (TCPID), School of Education, Trinity College Dublin. By asking the question: How can university students with intellectual disabilities be supported to respond to poetry? two themes were identified in the findings: ‘Curriculum content’ identified the importance of providing background information on the poet and selecting poems that directly relate to their life experience. The second theme ‘Pedagogical approaches’ examined how the utilisation of a variety of teaching and learning strategies, informed by a Universal Design for Learning (UDL) approach, can be successfully used to develop Arts, Science and Inclusive Applied Practice (ASIAP) students' interpretations of poems.

In India, the population of persons with disabilities is estimated as 26.8 million of whom 15.7 million are in the age range 15–59 years (Census 2011). This has proved to be a challenge to the right to education, particularly when there is a situation of poverty and gender-specific issues, which along with disability, lead to further marginalisation. The study reported investigated factors that enabled and/or inhibited progress in the lives of people with disabilities who are doubly disadvantaged. The authors focused on the lived experiences of 14 persons with disabilities and collected data from them using semi-structured interviews. Interview responses were transcribed and coded and validated before grouping into themes of facilitators, inhibitors and opportunities for a better future. The results revealed that family support, support from members in the community and the confidence of persons with disability on their own capabilities were enabling factors. Lack of public awareness, poor facilities for continuing education, untrained teachers, lack of accessible environment and resources, the trauma of having to prove themselves to gain acceptance were inhibitors of their progress. Caregivers of persons with intellectual and developmental disabilities expressed concern for their child's future. Poverty, living in remote areas and/or being a female formed further obstacles to accessing higher education and employment.