Summary This paper is about 20 studies on people with intellectual disabilities in universities in different countries. It shows more people are getting the chance to study and work, but many people are still left out. It explains how universities try to include people, but there are still problems like money, rules, and support. Some of the research is written with people with intellectual disabilities, so their real voices and experiences are heard. This research matters because it shows people with intellectual disabilities can do well, and they should be included, listened to, and given fair chances.
ABSTRACT Background Aging for people with learning disabilities often occurs in contexts of inequality, affecting the continuity of support and participation in care decisions. This study utilizes inclusive research to co‐produce situated knowledge and recommendations that strengthen rights and care priorities in old age. Methods This qualitative, exploratory‐descriptive study was conducted with two advisory groups of people with learning disabilities acting as co‐researchers and experts by experience. Across three sequential phases (ideation, co‐analysis of external data, and prioritization of needs), participants co‐produced recommendations using accessible tools such as easy‐read materials, pictograms, and moodboards. Findings Four key domains emerged: fragmented programs and services with cognitive accessibility barriers; health and wellbeing issues regarding irregular follow‐ups and medicalization; post‐parental planning to anticipate housing and avoid non‐consensual care burdens; and perceptions of aging involving fears of grief and loneliness. Conclusions Co‐producing care needs promotes epistemic justice by redistributing interpretive authority to people with learning disabilities. The study advocates for integrated care models based on cognitive accessibility and person‐centered anticipatory planning to prevent reactive decision‐making in old age.
Background People with learning disabilities often face significant challenges in understanding health information. Pictorial supports are widely assumed to improve communication for people with learning disabilities, yet little research examines how visual communication can be effectively designed for this group.Methods The principles were developed out of findings from five co-design workshops with people with learning disabilities (n = 34) and through our public and patient involvement partnerships. We cocreated a health animation, Maria' Story and a series of infographics to disseminate information from a broader project, [name]. This research aimed to identify the multiple long-term condition patterns of people with learning disabilities.Findings This paper describes and illustrates the design principles to guide practitioners creating visual information. These include: (1) heterogeneity, (2) cognitive overload, (3) attention differences, (4) literal interpretation, (5) meaningfulness, (6) emotional affect, and (7) numeracy.Conclusions Three key messages underpin the principles. First, the need to cocreate visuals with people with lived experience to ensure they meet the needs of their intended audience. Second, the importance of including people's carers in interactions using the picture-based health information as communication partners. Third, the relevance of context and storytelling approaches to maximise understanding.
ABSTRACT Background Developing literacy and numeracy skills among patients in secure care/forensic inpatient settings can significantly support recovery and rehabilitation. Some patients in secure care/forensic services can have specific or generalised learning disabilities. In comparison to the Programme for the International Assessment of Adult Competencies (PIAAC) there is a notable disparity in literacy and numeracy skills between forensic inpatients and the general population. Aims This service evaluation aimed to explore how patients perceive the role of literacy and numeracy education within their treatment and recovery journey. Specifically, it sought to identify both the educational and personal impact of engaging with an ‘in‐house’ education service. Methods A cross‐sectional survey design was used. Twenty‐one male patients accessing an NHS education service within a secure care/forensic inpatient hospital in the North East of England completed a bespoke questionnaire. Participants included individuals with specific and generalised learning disabilities. Additionally, routinely collected data assessing the literacy and numeracy levels of 28 patients were reviewed. Results The initial assessment findings show that the majority of adult patients, with an age range of 18 to 65, accessing the education service in a secure care unit had an equivalent level of 5–7 years age for English and 7–9 years in Maths. In survey responses from patients who had accessed educational sessions they reported experiences of improved confidence in literacy and numeracy, along with perceived improvements in relationships, meaning‐making, and personal interests. Conclusions This evaluation highlights the multifaceted value of literacy and numeracy education within secure settings. Beyond skill development, education services may foster therapeutic benefits that support recovery. Further research and systematic evaluation would support understanding of long‐term outcomes and inform future service provision.
Background Adults with intellectual disabilities, particularly those with Down's syndrome, are at increased risk of developing dementia, yet early changes are often subtle and first noticed by family members or paid support staff rather than clinicians. While validated diagnostic instruments exist, they are designed for specialist assessment and serve a different purpose from routine caregiver observation and documentation.Methods Using an iterative co-design approach, we combined an updated review of existing instruments, secondary analysis of lived-experience data, discussion groups, consensus workshops, and qualitative usability feedback involving people with intellectual disabilities, family carers, paid support staff and clinicians.Findings Co-design identified priority domains reflecting functional, behavioural, emotional and communication changes that may precede diagnosis, particularly among people with Down's syndrome. A 14-item informant-based checklist and tracking framework were developed. Face and content validity were supported through stakeholder review. Users estimated completion time at 10-15 min and reported good acceptability and usability.Conclusion EarlyMind-ID represents a co-designed, early-stage checklist and tracking framework intended to support caregiver observation alongside existing diagnostic assessment processes. Further work is required to examine feasibility, implementation and measurement properties before any clinical application.
Background Residential care settings can prompt adults with intellectual disabilities to exhibit attachment behaviours towards care staff. This study explored the psychometric properties of the Adult Attachment Behaviours Inventory for Intellectual Disabilities (AABI-ID). We also examined the association between attachment behaviours and adaptive and behavioural profiles and reflected on the clinical use of the AABI-ID.Methods The AABI-ID aims to assess the presence and selectivity of attachment-related behaviours in adults with intellectual disabilities towards care professionals. In this study, it was completed for 152 adults. Individual support workers (ISWs) and other support workers (OSWs) provided ratings alongside assessments of adaptive and challenging behaviours.Results Results indicated excellent internal consistency and good test-retest reliability. Differential profiles were observed in ISWs and OSWs. Furthermore, significant positive associations were identified with the Vineland Adaptive Behaviour Scales, Second Edition and Behavior Problems Inventory.Conclusions The AABI-ID appears to be a promising tool for fostering professional reflexivity and enhancing the integration of attachment behaviours in daily clinical practice.
Background This service evaluation was conducted with an NHS Community Learning Disability Service (CLDS), which provides multi-disciplinary care for people with learning disabilities, their families and care providers. Understanding how bereavement is addressed in learning disability services is important, given the often complex impact of grief* on people with learning disabilities' mental health and behaviour.Aims This study aimed to evaluate whether bereavement was considered as a factor of service user distress by a community learning disabilities team. It also aimed to identify concepts regarding the service response strategies to bereaved people with learning disabilities in distress.Methods This evaluation explored whether a CLDS considers the impact of bereavement when supporting service users in distress. This study also evaluated the CLDS response strategies to bereaved people with learning disabilities in distress. A mixed-method approach was used to analyse 33 service user records and conduct five interviews with CLDS staff.Results Findings showed that most service users received interventions for grief-related distress. Four categories were constructed from the data: 'Psychology Input', 'Supporting Care Providers', 'Multi-Disciplinary Team (MDT) Working', and 'Guidance'. Interviews resulted in additional categories, including 'Recognising the Global Impact', 'Being Client-Led', and 'Systemic Challenges'. The most common service response strategies were 'Guidance' and 'MDT Working'.Conclusions Recommendations include maintaining a systemic approach and continuing to develop written guidance for discussing death. The increased use of measures to identify grief-related distress, further training provision and reflection opportunities for staff were also recommended.
Introduction Support staff (e.g., support workers) play a key role in the lives of adults with a learning disability in residential settings in England. However, the care relationship between the two seems under-researched with potential care practice implications.Methods We conducted online interviews with 23 support staff, exploring their perspectives on care relationships and what makes them positive. We used reflexive thematic analysis and generated four themes, namely The care relationship as a conundrum; Care relationships in a material and ideological reality; The skilled worker; and Relationships matter.Findings The care relationship is 'a strange, grey area', a conundrum occurring within staff's and residents' intertwined realities. The material and ideological conditions surrounding the relationship can facilitate or hinder it. The person expands beyond the resident. Building and restoring relationships requires various skills. The absence of positive relationships can be detrimental.Conclusions Praxis is at the core of care relationships as they operate within emotional, practical, and socio-political spheres, directing us towards a care ecology. Staff's and residents' (shared) humanity can be used relationally.
Background: The REACHE project started in January 2023, when a group of nursing and allied health professional academic researchers from the University of Liverpool, people with learning disabilities and representatives from local learning disability support organisations (People First Merseyside and MOWLL) collaborated to co-produce a short video to promote inclusion within research. Methods: The project consisted of six phases which took place over 14 months (January 2023-March 2024). The REACHE project was co-produced at every stage and all members used inclusion and respect as core values throughout. This paper reports on the REACHE project's journey and the findings from phase 2, which was a co-design meeting. Findings: Three themes from a co-design meeting which influenced the creations of all resources were: research partnerships and resource development, ethical approval-balancing risk with an inclusive approach and reasonable adjustments. Conclusions: This project resulted in a co-produced short video clip and imagery. It demonstrated the value of partnership working and collaboration throughout this project. It reinforces the need for inclusive research practice in healthcare research.
Background Adults with intellectual disabilities experience higher rates and earlier onset of dementia, however post-diagnostic support within community intellectual disabilities services remains inconsistently structured. Existing approaches often emphasise information provision or ad hoc advice, with limited availability of clearly specified, manualised psychosocial interventions tailored to this population.Methods POST-ID was developed through a staged, iterative and co-produced intervention development process aligned with Medical Research Council guidance. Qualitative findings from caregivers and wider stakeholder engagement informed intervention design. Six caregivers, family and paid participated in structured review cycles to refine session content, materials, and delivery within routine community intellectual disabilities services. The final intervention was fully specified using the Template for Intervention Description and Replication (TIDieR) checklist.Findings Stakeholder feedback led to substantive refinements, including delivery across six structured sessions, prioritisation of emotional safety and identity preservation, and explicit focus on carer-mediated behaviour change. A central intervention output is a co-produced Dementia Support Plan, designed to translate facilitated discussions into consistent, day-to-day caregiving practices across settings. These processes resulted in a structured, manualised, behaviourally informed psychosocial intervention deliverable by existing community intellectual disabilities clinicians.Conclusion POST-ID provides a clearly specified, behaviourally informed post-diagnostic psychosocial intervention designed for implementation within routine intellectual disabilities services and is ready for feasibility and implementation testing.
Background In Canada, people with an intellectual disability and their families often have trouble accessing federal programs. Applications can be hard to understand, services may be disconnected and information is not always easy to find.Methods Six online focus groups were conducted with 30 participants, exploring the question: What are the experiences of people with an intellectual disability and their families in trying to access federal programs and services in Canada, and how could a navigator help make these systems easier to use? Groups were co-facilitated by researchers with and without disabilities using accessible materials.Findings Six themes emerged from the focus groups: (1) difficulty finding program information, (2) reliance on informal networks, (3) complex and inaccessible applications, (4) challenges at transition points, (5) need for holistic, personalised navigation and (6) importance of navigator quality and consistency.Conclusions Participants indicated that navigation supports are desired to help people with an intellectual disability and their families access federal programs. They work best when designed with input from people with lived experience with disability, and navigators are properly trained. Navigation can be a helpful tool to improve equity, but broader changes in policies and systems are also needed to remove barriers.
Background and Aims Learners with profound and multiple learning disabilities are frequently marginalised within conventional assessment systems because these systems rely heavily on verbal self-report and standardised attainment measures. This study examined whether engagement could be observed and interpreted as a meaningful indicator of learner state in complex needs contexts.Methods Using an integrated qualitative and quantitative observational design, six learners aged 10-14 who did not use speech as their primary means of communication were observed across baseline activities and learning conditions aligned with self-determination theory. Engagement and motivation were examined through behavioural coding, motivational profiling and interpretive observational analysis. Interrater reliability demonstrated good to very good agreement, with Kappa values of 0.71-0.82.Results Thematic analysis identified four interrelated dimensions of engagement: relational safety, supported autonomy, regulation through disengagement and re-engagement and assessment as interpretive practice. Autonomy- and relatedness-oriented conditions were more consistently associated with sustained engagement than competence-focused activities.Conclusions The findings suggest that engagement may offer a useful, context-sensitive alternative to deficit-based assessment for learners with profound and multiple learning disabilities when interpreted relationally and cautiously. Rather than functioning as a measure of compliance or attainment alone, engagement may help practitioners understand participation, readiness and environmental fit in complex needs contexts.
Background People with learning disabilities should be involved in conversations around funerals. Conversation-starter pictures were developed to support funeral conversations between people with a learning disability and support staff. How this resource is used in practice and how staff asks questions about the funeral pictures need exploration. This study explored how known-answer questions were posed and pursued when people with learning disabilities and support staff talk about funeral pictures.Methods Seven sessions with people with learning disabilities and support staff using funeral resources from an end-of-life care planning toolkit were video-recorded, transcribed, and analysed using Conversation Analysis. Known-answer questions were identified and analysed in two sessions involving the 'Let's Talk About Funerals' resource.Findings Staff asked known-answer questions where the recipient should provide a 'correct' answer. Questions were initially open, not indicating that a specific answer was needed. Staff pursued answers through follow-up questions targeting funeral terms and by minimally acknowledging the proposed responses. This led to missed opportunities to elaborate on these responses.Conclusions Support staff should be mindful about pursuing answers as it may close the conversation and not allow for exploration of the perspective of the person with a learning disability.
Background Our research reviewed outcomes for autistic individuals and those with learning disabilities against Transforming Care objectives in a secure Provider Collaborative and compared these to the mental health cohort to further examine inequalities.Methods Data routinely collected by the Provider Collaborative were used to explore the number of individuals in secure care, lengths of stay and whether admissions were within the Provider Collaborative network. The data were grouped by diagnosis and compared both within and across cohorts.Findings The number of individuals in secure care reduced due to a reduction in the number of individuals with learning disabilities without autism. Conversely, the number of autistic individuals increased. Lengths of stay were longer for individuals with learning disabilities. A greater proportion of autistic individuals and individuals with learning disabilities were placed in independent sector hospitals. Out-of-network placements were reduced across all cohorts.Conclusions A reduction in the number of admissions (learning disabilities only) and fewer placements outside of the network area were noted. Length of stay for autistic individuals without learning disabilities was comparable to the mental health cohort.
Background Arts-based activities and experiences are often beneficial for health and wellbeing, however people with learning disabilities and complex needs and their families are often excluded from arts programmes, venues and activities due to inaccessible facilities, practices and cultures. This paper reports on how an inclusive arts-based programme, Art and Us, supported the development of art and organisational practices that could better include children with learning disabilities and complex needs and their families.Methods This was a qualitative project involving four surveys, 14 interviews and two focus groups with families, artists and wider Gallery staff (26 participants).Findings The findings show that inclusive arts programmes are valuable to children, families and artists, and can help galleries understand how better to include them. Arts activities enable marginalised families to be included in art practices and spaces in ways they had not done previously.Conclusions Inclusive arts programmes not only provide an important provision for children with learning disabilities and complex needs and their families but also develop the inclusive practices of artists and galleries. Mainstream galleries may not always be able to meet this group's needs though inclusive arts programmes can help to create more accessible programmes, cultures and spaces.
Background and Aims Initial teacher education has been identified as a key factor in preparing prospective Physical Education (PE) teachers for inclusive education. However, limited research has examined the role of external practicums in shaping perceptions of inclusion and self-efficacy. This study aimed to analyse prospective PE teachers' perceptions and self-efficacy towards inclusion before, during and after their practicum.Methods A retrospective sequential mixed-methods design was employed with 54 final-year students enroled in a Primary Education degree specialising in PE. Quantitative data were collected using the Self-Efficacy Scale for Physical Education Teachers towards Students with Disabilities, while qualitative data were obtained through two focus groups (n = 16). Descriptive statistics and content analysis were conducted.Results Findings revealed a clear shift in perceptions over time. Initial feelings of insecurity and insufficient practical preparation evolved into increased confidence and a more nuanced understanding of inclusion. Participants reported moderate-to-high levels of self-efficacy across intellectual, physical and visual disabilities (M approximate to 3.4). Qualitative data highlighted the importance of direct contact with pupils with disabilities, inclusive teacher modelling and structured lesson planning.Conclusion The practicum experience played a transformative role in shaping prospective teachers' perceptions and strengthening self-efficacy towards inclusion. These findings emphasise the importance of experiential learning within teacher education programmes to better prepare future teachers for inclusive practice.
Background Across Canada, people with an intellectual disability continue to face systemic barriers and inequities in employment. To raise awareness and promote change, a self-advocate led participatory disability theatre project acted as both inquiry and advocacy.Methods Guided by the principles of Critical Disability Studies and Disability Justice, people with an intellectual disability, in partnership with Community Living Society, Massey Theatre, and UBC's Canadian Institute for Inclusion and Citizenship, developed and performed a disability theatre production, We Deserve to Work. This manuscript examines the experiences of self-advocate co-creators using focus group methods.Results Six themes emerged from the focus groups with self-advocates: (1) Self-Determination and Desire for Voice, (2) Emotional Journey of Participation, (3) Personal Growth and Learning, (4) Control of Narrative and Storytelling Power, (5) Advocacy Through Creative Expression, and (6) Building Community.Conclusion Theatre has the potential to function as a powerful medium for learning, advocacy, and social change, particularly when accessibility is grounded in relationships, trust, and collaborative practices. Furthermore, positioning self-advocates as leaders in initiatives that affect their lives and communities, alongside inclusive creative collaboration, can reshape public attitudes toward disability by highlighting it as a source of strength, expertise, and knowledge.
Background and Aims Mothers of young adults with intellectual and developmental disabilities in minority Arab communities undergoing rapid social transition navigate complex tensions between traditional collectivist norms and emerging modern orientations. This study examined mothers' perspectives on their children's adult futures and explored how shifting cultural values shape expectations for autonomy, family life, education, employment and long-term care.Methods A qualitative design was employed using semi-structured interviews with 10 mothers of adolescents and young adults with mild to moderate intellectual and developmental disabilities. Interviews were transcribed verbatim and analysed using thematic content analysis. Trustworthiness was enhanced through researcher triangulation, iterative consensus building and peer debriefing.Results Mothers described an ongoing negotiation between collectivist family responsibility and selective openness to autonomy, education, employment and social participation. Adulthood was usually imagined within continuing family support rather than as separation from it. These expectations were strongly gendered: daughters were more often oriented toward basic daily independence, whereas sons were more often imagined in relation to work and, at times, marriage and future family life, usually with continued maternal involvement.Conclusion These findings indicate that, in a society shifting from collectivist norms to modern orientations, adulthood for people with intellectual and developmental disabilities is imagined not through separation from family support, but through negotiated relational forms of adult life. The study highlights how expectations are shaped by family centrality and gendered assumptions about roles. It underscores the need for culturally responsive approaches that expand opportunities for participation while remaining attentive to relational support.
Background Research rarely focuses on the perspectives of individuals with learning disabilities in relation to access to visual arts, resulting in significant gaps in understanding their preferences, needs, and lived experiences. This underrepresentation reflects a broader societal pattern in which voices of people with learning disabilities remain marginalised in cultural discourse. This qualitative study, informed by the framework of crip curation, explored how 11 artists with learning disabilities perceived and experienced access to visual arts.Methods Semi-structured interviews and fieldnotes were used to centre their perspectives as both artists and audience members.Findings Our findings showed that participants conceptualised access in three interrelated ways: first, as an interpretative orientation shaped by previous normative art experiences as audience members; second, as a multimodal form of engagement in which personalised and flexible strategies were valued over standardised access provisions; and third, as a relational process in which access was conditionally recognised. Together, these findings highlighted the tensions between the forms of access envisioned by participants and prevailing access practices.Conclusions We argue for curatorial approaches that embrace subjective, relational, and co-created forms of access, aligned with the principles of crip theory.
