ABSTRACT Implementation failures in the intellectual disability context are often attributed to poor delivery, yet their roots frequently lie in the pre‐implementation phase. Although highlighted in implementation frameworks, pre‐implementation is commonly treated as administrative preparation rather than a decisive determinant of success. In the intellectual disability context, inadequate preparation is particularly consequential: fragmented governance, limited evidence bases and heterogeneous service‐user needs heighten vulnerability to early‐stage weaknesses. This conceptual debate paper argues that many implementation failures, both within research studies (e.g., randomised controlled trials, RCTs) and in implementing interventions into routine practice, originate in underdeveloped pre‐implementation processes and that structural features of the intellectual disability context further amplify these risks. We propose repositioning pre‐implementation as strategic core work through a pragmatic, co‐designed and multi‐level approach. The perceived tension between urgency and preparation is better understood as a false dichotomy; structured pragmatism allows services to act while learning. We outline a coordinated strategy comprising clarified governance, systematic readiness assessment, concurrent evidence generation, visible leadership engagement and institutionalised co‐design to strengthen conditions for equitable, sustainable and durable implementation.
ABSTRACT As the population of people ageing with intellectual disabilities grew in the 1980s, the Hong Kong government supported research exploring their needs and recommended a range of initiatives, including the promotion of community inclusion. This study aimed to identify how the government has understood and responded to the ‘problem’ of people ageing with intellectual disabilities since that time. A total of 53 documents published by the Hong Kong government between 2004 and 2024 related to ageing with intellectual disabilities, including reports, funding agreements, financial budgets, and policy recommendations, were identified. They were thematically analysed to identify how ageing with intellectual disabilities was represented as a problem and how the government responded to the problem. The findings show that people ageing with intellectual disabilities are portrayed as declining physically and ageing prematurely, their needs as no longer being met by vocational adult services, and their families as having limited capacity to meet their increasing care needs. With a few exceptions, government policies have not pursued specialist programs targeting ageing people or their families. Rather, policies have enhanced the capacity of general services for adults with intellectual disabilities to address health care needs, the capacity of parental caregivers through education and allowances, and have alleviated parental anxiety about future care through the establishment of Special Needs Trust. While recognising the changing needs of the growing number of people ageing with intellectual disabilities, the Hong Kong government has nonetheless continued the policy trajectory established in the 1980s that emphasises lifelong care and protection of people with intellectual disabilities rather than promoting community inclusion and independent living.
Pain assessment of people with intellectual disabilities (PWID) represents a complex clinical task that often results in underestimation and inadequate treatment. The Serafico Institute has undertaken research in children and young adults with intellectual disabilities (ID) associated with multiple sensory, physical, and psychobehavioral impairments to improve the ability to detect pain in this vulnerable population. Participants unable to pain self-report, presenting with unexplained behavioral changes, were assessed with the revised Face, Legs, Activity, Cry, Consolability (R-FLACC) scale by trained educational and health staff from February to July 2023. Data was compared to retrospective information collected from February to July 2022, before the training of educational and health personnel had been undertaken. Five hundred fifty events of unexplained behavioral changes were evaluated in 87 participants with ID. Among those, 202 were assessed as pain-related events, 345 were judged as distress events and three events were not clearly identified. The cause of pain was identified in 55% of events. Compared to the retrospective data, we could observe an increase in the detection of pain-related episodes and a reduction in events that, while not clearly rated, were still treated with analgesics or analgesics plus sedatives. The results of the study highlight that formal training of educational and health personnel, along with the use of a validated tool for pain assessment in PWID can lead to identifying pain-related events that might otherwise have been overlooked. The fact that the R-FLACC was found to be very useful for signaling a state of "discomfort," while not being discriminatory regarding its nature and the cause of pain in this complex population, calls for new studies to identify a tool capable of more accurately discriminating the cause of the pain.
This study investigates the economic situation of adults with intellectual disabilities (ID) living in the community in the United Kingdom, utilizing data from the Family Resources Survey. The analysis covers 8 years of data (2012/13-2019/20) to provide a comprehensive overview of income, material hardship, and employment status among this population. Adults with ID are shown to experience heightened levels of poverty and material hardship compared to the general population and other groups with disabilities. The findings reveal that nearly a third of households with an adult with ID live below the official poverty line, and many struggle with essential needs, such as heating and food security. The study highlights the unique challenges faced by adults with ID, including low levels of paid employment and high costs associated with their condition, which are not adequately covered by disability benefits. The findings underscore the need for policy interventions to address the economic and social vulnerabilities of adults with ID. Suggestions include increasing the Personal Independence Payment for those with ID and considering economic support through a household-based lens to accommodate the needs of family members involved in caregiving.
Siblings play a vital role in each other's lives. When one sibling has an intellectual or neurodevelopmental disability, this may influence the typically developing sibling's emotional responses and the quality of the siblings' current and future relationships. This study examined a predictive model of emotional responses, which were categorized as active negative, passive negative, and positive, among emerging adult siblings of individuals with Down syndrome or autism. The model assessed the influence of optimism, with perceived social support evaluated as a mediating variable. The data indicated that siblings who have a brother or sister with autism experienced significantly greater active and passive negative emotions than those with a brother or sister with Down syndrome, whereas the latter reported higher levels of positive emotions, optimism, and perceived social support. Gender differences emerged, with sisters of individuals with DS/autism expressing more positive emotions than brothers. Mediation analyzes revealed that perceived social support significantly mediated the relationship between optimism and both passive negative and positive emotions, but not between optimism and active negative emotions. These findings highlight the sometimes-challenging emotional responses by typically developing siblings, particularly those of individuals with autism, and highlight the protective role of perceived social support. The study emphasizes the importance of developing targeted interventions to support sibling well-being, especially among male siblings of individuals with autism.
People with intellectual disabilities experience poorer health than the general population, largely due to preventable non-communicable diseases. Although randomized controlled trials (RCTs) are the gold standard for evaluating health promotion interventions, they are rarely conducted with young people with intellectual disabilities because of inadequate research procedures. This methodological paper draws empirical insights from a research program and relevant literature involving co-design and an upcoming RCT of a digital health promotion intervention. Using the core RCT components, randomization, control, and trial procedures as an analytical framework, the paper integrates empirical experience and literature to examine challenges in conducting inclusive RCTs. Participation and accessibility emerged as overarching methodological considerations influencing recruitment, retention, engagement, statistical power, generalizability, and overall trial validity. Empirical experiences illustrated how relational, organizational, and methodological adaptations can address these challenges in practice. By combining evidence from the literature with empirically grounded strategies developed across the research program, this paper advances more inclusive and feasible RCT methodology for research involving young people with intellectual disabilities.
Informal support networks are essential for the inclusion and quality of life of people with intellectual disabilities, especially in light of increasing pressure on formal care systems due to staff shortages and budget cuts. Volunteers can play a key role in these networks by providing companionship, emotional support and leisure activities. Research on the needs of volunteers involved in the care of people with intellectual disabilities is limited. A better understanding of how volunteers perceive their role, and what they need to be and remain engaged is crucial to effectively support and integrate their contributions within care. Therefore, this study explores the needs of volunteers, how they perceive their role and how they can contribute to the care and lives of people with intellectual disabilities. In this qualitative study, 22 volunteers were interviewed in three focus groups covering residential care, daycare activities and leisure activities settings. A semi-structured interview guide was used and data were analysed using reflexive thematic analysis to identify key themes related to volunteer motivations, needs and perceived roles. Volunteers were primarily motivated by close and reciprocal relationships with the people they support, which they considered to be the foundation of their volunteering experience. They emphasised the importance of experiencing autonomy in their work, alongside alignment with personal interests, clear role definitions, practical information and organisational support. Being recognised and included by support staff enhanced their sense of belonging. These findings suggest that volunteering offers meaningful experiences for volunteers and supports positive interactions with people with intellectual disabilities. The results underscore the importance of more equal collaboration with staff, clearer role definitions and stronger organisational support to maintain and strengthen volunteer involvement. Further research is needed to confirm these findings.
Active Support is a staff practice that increases people with intellectual disabilities' engagement in purposeful activities and social interactions, but variability in its implementation has been found across accommodation services. To explain this variability, researchers have examined predictors of either the quality of Active Support or levels of engagement but have not analysed them together. The aim of this study was to examine predictors of the quality of Active Support and in turn levels of engagement. Multilevel path analysis was used to test models comprising predictors of two dimensions of Active Support-Technical and Interpersonal-as well as engagement in social and non-social activities. Data were available for 573 people with intellectual disabilities across 198 accommodation services. The multilevel path analysis showed that strong practice leadership, culture of Supporting Well-Being, smaller sized services and higher adaptive behaviour of people with intellectual disabilities predicted Technical and Interpersonal Active Support. In turn, Technical Active Support and adaptive behaviour predicted non-social engagement. Interpersonal Active Support, adaptive behaviour, age, and two dimensions of challenging behaviour predicted social engagement. The findings confirm and extend previous evidence about predictors of the quality of Active Support and levels of engagement. The path models provide evidence for previously assumed connections between key variables important for the quality of Active Support and higher levels of engagement. The path models could provide guidance in what to focus on to implement and improve Active Support and engagement in services.
Individuals with intellectual and developmental disabilities face significant challenges in accessing and comprehending complex medical documents, contributing to health disparities and unmet healthcare needs. To address this issue an AI-driven tool (MTCAI) was developed and designed to simplify medical texts in accordance with the evidence-based Minimized Text Complexity guidelines. Unlike traditional Plain Language approaches, Minimized Text Complexity guidelines are tailored to readers with limited literacy, including those reading below a third-grade level. This study evaluated MTCAI's effectiveness in simplifying after-visit medical summaries for adults with IDD. The project involved two phases: (1) development and refinement of MTCAI using large language models to systematically automate and apply the Minimized Text Complexity guidelines, and (2) conducting a participatory needs assessment and message testing with five adults with intellectual and developmental disabilities. Participants reviewed medical reports in both their original format and in MTCAI-simplified formats. Quantitative analyses revealed that MTCAI-generated texts significantly reduced reading complexity, achieving levels comparable to those of second-grade texts. Qualitative findings showed that all participants preferred the simplified reports, demonstrated improved comprehension, and expressed a willingness to engage with the simplified documents independently. These results suggest that MTCAI is a promising tool for enhancing health communication accessibility for individuals with intellectual and developmental disabilities. Future research should investigate broader implementation and assess the long-term effects on health outcomes.
Unquestionably, with the increase in life expectancy, dementia has become a significant health issue in Down syndrome (DS). However, in at least a subset of these individuals, cognitive aging can be considered normal, with absence of dementia symptoms even in the presence of Alzheimer's neuropathology. Therefore, it is essential to understand the complex interactions between risk and protective factors for dementia in this population. Studies are needed to address and elucidate those factors that may improve resilience against cognitive deterioration. Cognitive reserve (CR) is a theoretical construct proposed to explain variability in responses despite similar brain insults. Research addressing CR proxies in people with intellectual disability is limited; evidence is mostly derived from literature reviews or extrapolations from other populations. The present study aims to explore the association between specific proxies of CR and the occurrence of cognitive decline and dementia among adults with DS. Two complementary methodologies were adopted: a retrospective and observational study and a cross-sectional study involving aging adults with DS. Severe levels of intellectual disability and older age were associated with a higher prevalence of cognitive decline or dementia. We observed a correlation between some proxies of CR. Previous engagement in occupational activities was correlated with regular school attendance, and higher parental education was associated with increased literacy in individuals with Down syndrome. The level of intellectual disability was associated with cognitive decline. Previous engagement in occupational activities and regular school attendance were identified as factors that may be associated with the construct of cognitive reserve and deserve future investigation. Higher parental education was a potential parameter that appears to affect the literacy of their child with trisomy 21.
Despite international efforts to implement a rights-based approach in services for individuals with intellectual and developmental disabilities (IDD), concerns about rights violations-both overt and subtle-remain present in everyday practice. This study examines the perceptions of 1134 professionals working in IDD services across 10 Spanish regions regarding the extent to which service users' rights are respected, their needs and preferences are addressed, and the emotional and attitudinal responses of staff. Findings indicate that while most professionals perceived general respect for rights, important concerns were reported regarding specific areas, particularly privacy, social inclusion, and legal recognition. Longer professional tenure was associated with a greater likelihood of reporting perceived shortcomings in rights implementation. Emotional responses such as pity, overprotection, and ambivalence were more frequently reported when professionals worked with individuals with higher support needs. Notably, 27.7% of respondents believed that the right to privacy was not adequately respected, and 38.7% identified lack of attention as a form of inappropriate treatment. These findings highlight the ethical relevance of professional perceptions and organizational practices and underscore the need for ongoing ethical reflection and service-level improvement. Interpreted within the framework of the UN Convention on the Rights of Persons with Disabilities and the Quality of Life Supports Model, the results point to the importance of aligning everyday support practices with person-centered and rights-based principles.
Inclusive research recognises the right of people with intellectual disability to collaborate, lead and direct research projects rather than participate only as subjects. Researchers have a responsibility to make the process of research accessible and open to researchers with disability. This narrative review is a response to Walmsley et al.'s article that discusses the value of inclusive research. The review aimed to provide an update on the progression of inclusive research and ascertain current practices and strategies for inclusive research whilst identifying and analysing gaps in knowledge. Thematic analysis of papers identified four areas underpinning inclusive research: (1) highlighting the voices of people with intellectual disability in research; (2) ensuring accessible research; (3) encouraging collaborative research; and (4) committing to reflexive improvement. However, the literature also indicated that there is no standard practice when it comes to inclusive research. This highlights the need for a uniform curriculum for inclusive research training that ensures the active participation of people with intellectual disability within research projects.
This study examines parents' perspectives on the role of technology in the daily functioning of their adult children with intellectual disabilities (ID). Responses from 91 parents were analysed to explore technology access, usage patterns, and perceived opportunities and risks. Approximately half of the parents reported noticeable changes in their children's functioning due to technology use, with perceived impacts being both positive (e.g., enhanced autonomy, skill development, and social engagement) and negative (e.g., addiction, safety risks, and exploitation). Significant differences in technology-related activities emerged based on gender and degree of disability. Daughters and individuals with moderate disabilities were more frequently reported to use technology for educational purposes, while those with severe disabilities primarily used it for leisure activities like listening to music and taking photos. Parents observing changes were more likely to impose restrictions, often citing safety concerns. The findings highlight the dual role of technology as a facilitator of development and a potential risk factor. The study emphasises the need for targeted interventions to support safe and effective technology use by adults with ID, alongside caregiver training to enhance digital mediation. These insights contribute to understanding the complex dynamics of digital inclusion for individuals with intellectual disabilities.
Parents of children with severe and profound intellectual disabilities (SPID) experience an enormous burden of care, which affects family function and well-being. Formal and informal support can contribute to the family's functioning. This study explores perceived support among these parents. Sixty Israeli parents of children with SPID completed questionnaires on (1) Family quality of life (FQoL); (2) Shame and guilt; and (3) Parental stress. They were also asked to respond to open-ended questions regarding their experiences with formal and informal support. Parents' statements underwent inductive content analysis. Parents rated the importance of formal support as very high, yet the attainment of the domains was rated below average. The importance of informal support was rated high, and its attainment was above average. The child's medical challenges increased parental personal responsibility, which mediated higher levels of parental shame, guilt, and stress. Informal, but not formal support, mitigated this effect, reducing the association between medical problems and parental stress and guilt. Parents expressed the need for reliable and accessible support systems to ensure stability for the child and family. Disability-related services need to be strengthened to better meet the expectations and needs of parents of children with SPID. Professionals should assess and encourage the utilization of extended family and community resources.
This study explores the impact of parental engagement in Community-Based Rehabilitation (CBR) programs on daily functioning in individuals with intellectual disabilities in Malaysia, focusing on self-management, motor skills, social skills, and other essential abilities. Conducted across 14 CBR centers in Malaysia, the study used quantitative methods. Surveys with Likert scale assessments measured parental engagement's influence on trainee development. Data were analyzed using SPSS. A strong correlation emerged between active parental participation and positive developmental outcomes, with significant improvements in trainees' daily activity skills, self-development, and independence. Findings underscore the importance of parental involvement in fostering self-development and independence in CBR participants. This study advocates for policies and practices that encourage parental engagement and collaboration among program administrators, families, and policymakers, ultimately optimizing benefits for individuals with intellectual disabilities and their families.
Personal development and inclusive education are fundamental rights. However, people with intellectual disability face significant barriers in accessing these rights. Empowering them is crucial to enable the exercise of their rights and achieve full social inclusion, which can be facilitated through tools that capture their experiences in personal development and education. The United Nations Convention on the Rights of Persons with Disabilities mandates the collection of statistical data to inform policies, evaluate compliance, and identify barriers. The study aimed to refine and validate a subscale designed to monitor the fulfillment of rights to personal development and inclusive education, and to examine its relationship with age, gender, and type of education (inclusive or mainstream). A total of 237 people in Spain participated in the study, using the pilot self-report or third-party version of the subscale related to personal development and inclusive education rights, which is part of the #Rights4MeToo Scale. This group included 138 students with intellectual disability, 15 family members, and 84 professionals. The analyses confirmed that the subscale has adequate evidence of reliability and validity. No significant relationships were found between the rights to personal development and inclusive education and age, gender, or educational setting among participants. The final version of the subscale serves as a valuable tool for monitoring these rights, crucial for planning policy and interventions to improve the quality of life for people with intellectual disability. To maximize outcomes in personal development and inclusive education, comprehensive sexuality education, flexible educational environments, vocational training tailored to individual aspirations, and inclusive recreational opportunities are needed.
Tactile symbols are effective communication tools for children with intellectual disabilities and visual impairments, supporting access to information and fuller participation in daily activities. In Japan, however, no sustainable, standard set of tactile symbols exists that is adapted to the local educational and cultural contexts. Unique features of Japanese schools, such as indoor shoes, designated gym uniforms, and the subject of "independent activities", differ from the routines assumed in the existing standardized tactile symbols system in the US. In addition, a prefectural-level teacher rotation system and a shortage of licensed specialists in schools for the blind hinder continuity of expertise. This study investigated the utilization (actual use) and the perceived necessity (teachers' recognition of need) of tactile symbols for children with intellectual disabilities and blindness in Japanese schools for the blind. One teacher from each school nationwide was invited to participate, with 44 valid responses obtained. A total of 47 survey items were developed: 18 related to places, 18 to activities/subjects, and 11 to people. McNemar's test was used to analyze the relationship between utilization and perceived necessity, revealing significant differences in one places item and five people items. Possible reasons include limited time for symbol creation, insufficient teacher training, and inadequate systems for information sharing among teachers. Classification analysis showed that places items were divided into [utilization (high)/perceived necessity (high)] and [utilization (low)/perceived necessity (low)], while 14 activities/subjects items (77.8%) were utilization (high)/perceived necessity (high). All people items were [utilization (low)/perceived necessity (low)], suggesting that people themselves may serve as distinctive tactile cues. Overall, tactile symbols are both used and considered necessary in Japanese schools for the blind, yet gaps remain between actual use and perceived need. The findings support the development of culturally appropriate standardized tactile symbol system in Japan.
Considering the possible influence of employment on the equality of rights, health, and quality of life of individuals with intellectual disabilities, it is imperative to consider their well-being at work, which is a key factor in job retention. The objective of this review was, therefore, to collect the existing empirical evidence on the subject of well-being at work among individuals with intellectual disabilities. Once the keywords had been selected, a search was conducted in six multidisciplinary databases: PubMed, PsycINFO, PsycArticle, Psychology and Behavioral Sciences Collection, SocINDEX, and SPORTDiscus. The review encompassed all studies that evaluated the well-being of individuals with intellectual disabilities in the workplace. The quality of the included studies was evaluated using the Mixed Methods Appraisal Tool. This systematic review has been registered on PROSPERO, with the registration number CRD42023485235. Of the 1827 identified studies, 14 were deemed eligible for inclusion, in addition to two studies identified outside the search process in the databases. The 16 studies included a total of 3291 participants with intellectual disabilities, employed in either sheltered or integrated work settings. The results indicate that job satisfaction is a key indicator of well-being in this population and the most extensively studied factor. Work-related factors and individual factors have been significantly associated with well-being at work in individuals with intellectual disabilities; yet no intervention has been tested to demonstrate their effects. The analysis of the extracted data and the methodological quality of the studies has revealed a lack of consensus on the measurement tools of well-being at work used among this population. This limits the possibilities for comparison and reproducibility of results. Further studies are required to identify the predictors of well-being at work in this population.
This study explored how a peer-mediated intervention (PMI) conducted at an inclusive preschool in Taiwan encouraged social interactions and eliminated problem behaviors in a child with severe and multiple disabilities (SMDs). The author used a single-subject experimental reversal design to analyze the case of a 6-year-old girl named Penny. Changes in Penny's social interactions and problem behaviors during the PMI were examined. When the PMI was introduced, Penny exhibited significant improvements in her social interactions and reductions in her problem behaviors, especially in the B2 phase. Furthermore, positive feedback and support from Penny's parents and classmates bolstered the efficacy and acceptance of the intervention strategies. These findings demonstrate that a PMI can promote social engagement and eliminate problem behaviors in children with severe disabilities, thereby underscoring the importance of adopting such interventions more widely in inclusive educational settings.
