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During the last few years the prevalence of autism and Autism Spectrum Disorder (ASD) has increased greatly. A recurring issue is the overlap and boundaries between Intellectual Developmental Disorder (IDD), ASD and Schizophrenia Spectrum Disorders (SSD). In clinical practice with people with IDD, the alternative or adjunctive diagnosis of ASD or SSD is particularly challenging. The purpose of this paper is to define the boundaries and overlapping clinical characteristics of IDD, ASD and SSD; highlight the most relevant differences in clinical presentation; and provide a clinical framework within which to recognize the impact of IDD and ASD in the diagnosis of SSD.

A systematic mapping of the international literature was conducted on the basis of the following questions: first, what are considered to be core and overlapping aspects of IDD, ASD and SSD; second, what are the main issues in clinical practice; and third, can key diagnostic flags be identified to assist in differentiating between the three diagnostic categories?

Crucial clinical aspects for the differentiation resulted to be age of onset, interest towards others, main positive symptoms, and anatomical anomalies of the central nervous system. More robust diagnostic criteria and semeiological references are desirable.

The present literature mapping provides a comprehensive description of the most relevant differences in the clinical presentation of ASD and SSD in persons with IDD.

Information on the risk of dementia in aging persons with intellectual and/or developmental disability (IDD) in Manitoba, Canada is lacking. The purpose of this paper is to estimate dementia prevalence in adults with IDD.

Anonymized population-level health and non-health administrative data (1979-2012) contained in the Population Health Research Data Repository of the Manitoba Centre for Health Policy (MCHP) were linked to identify adults with IDD, and estimate the prevalence of dementia based on the presence of ICD codes. Prevalence of dementia was estimated for persons aged 18-55 years and 55+ years, and was reported by sex, type of residence, region of residence, neighbourhood income quintiles, and IDD diagnostic category.

Of the 8,655 adults with IDD identified, 8.1 per cent had an indication of dementia in their medical records; an estimate three times greater than that found for those without IDD (2.6 per cent). More than 17 per cent of Manitobans with IDD aged 55+ years had an indication of dementia, which was nearly twice the rate reported previously. Of those with IDD and dementia, 34.7 per cent lived in long-term care facilities.

Health and social support services are typically available to individuals with dementia aged 65+ years; thus, younger adults with IDD and dementia may not be eligible for those supports. To promote equity in health and access to care, dementia screening and increased supports for aging individuals with IDD are recommended.

This paper aims to report process findings of two online inclusive research projects with people with intellectual and developmental disabilities (IDD). It includes a discussion of the potential benefits and barriers of online inclusive research and its impact on the future of inclusive research.

Two researchers describe the transition of their inclusive research projects from in-person to online formats and highlight how they operationalized the principles of inclusive research throughout these transitions.

Potential benefits of inclusive research include enabling participation of research participants with IDD when in-person methods are not safe or feasible, increasing participant control of the research environment, stimulating participants’ online skill development and reducing geographic and support barriers to participation in research. A barrier to participation in online inclusive research includes people with IDD’s lack of access to online spaces and Web-enabled devices. Additionally, people with IDD have support and communication needs that are not always accommodated by online skills training and access to the internet. To conclude, inclusive researchers need to develop skills and reflexivity specific to online research environments.

Inclusive online research with people with IDD brings unique ethical and methodological challenges that have not been well explored in the literature. Engaging people with IDD in research using online tools expands the terrain of inclusive research, opening possibilities for even greater inclusion and participation.

Inclusive abstract

Two researchers could not do their research studies because of the pandemic. They did them online. The studies were with people with disabilities.

Being online can make it easier for people with disabilities to be a part of a study. They can choose how to be a part of the study. They can also learn more skills.

Being online can be hard for people with disabilities. Some do not have a computer or smartphone. Some do not know how to use them. Researchers may not know how to help people with disabilities to be a part of an online study.

The debate as to whether intellectual disability (ID) should be conceptualized as a health condition or as a disability has intensified as the revision of World Health Organization’s (WHO’s) International Classification of Diseases (ICD) is being finalized. Defining ID as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. The purpose of this paper is to include some reflections on the consensus document produced by the first WHO Working Group on the Classification of MR (WHO WG-MR) and on the process that was followed to realize it. The consensus report was the basis for the development of official recommendations sent to the WHO Advisory Group for ICD-11.

A mixed qualitative approach was followed in a series of meetings leading to the final consensus report submitted to the WHO Advisory group. These recommendations combined prior expert knowledge with available evidence; a nominal approach was followed throughout with face-to-face conferences.

The WG recommended a synonym set (“synset”) ontological approach to the conceptualisation of this health condition underlying a clinical rationale for its diagnosis. It proposed replacing MR with Intellectual Developmental Disorders (IDD) in ICD-11, defined as “a group of developmental conditions characterized by a significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills”. The WG further advised that IDD be included under the parent category of neurodevelopmental disorders, that current distinctions (mild, moderate, severe and profound) be continued as severity qualifiers, and that problem behaviours removed from its core classification structure and instead described as associated features.

Within the ID/IDD synset two different names combine distinct aspects under a single construct that describes its clinical as well as social, educational and policy utilities. The single construct incorporates IDD as a clinical meta-syndrome, and ID as its functioning and disability counterpart. IDD and ID are not synonymous or mirror concepts as they have different scientific, social and policy applications. New diagnostic criteria for IDD should be based on a developmental approach, which accounts for the complex causal factors known to impact the acquisition of specific cognitive abilities and adaptive behaviours. The paper focuses on a new clinical framework for the diagnosis of IDD that also includes and complements the existing social, educational and policy components inherent in ID.

There has been an increase in research exploring the area of intellectual and developmental disabilities (IDD) and diabetes. Despite being described as instrumental to diabetes care for people with IDD, the role and experiences of family carers, such as parents and siblings, are often neglected in this research. However, it is clear that family carers do not feel that they have sufficient knowledge about diabetes. The purpose of this commentary is to extend the content from “Diabetes and people with learning disabilities: Issues for policy, practice, and education (Maine et al., 2020)” and discuss how family carers can feel better supported when caring for someone with IDD and diabetes.

This commentary discusses specific efforts such as STOP diabetes, DESMOND-ID and OK-diabetes for people with IDD including family carers. Encouragement is given for health care providers to recommend such programmes to people with IDD and their family carers. It is also suggested that health care providers involve family carers in diabetes care planning and implementation for people with IDD.

It is hoped that if changes are made to current diabetes practices and more research with family carers is conducted, diabetes prevention and management for people with IDD will be more successful and family carers can feel more confident in providing support to their loved ones.

Research exploring the role of family carers in diabetes care for people with IDD and diabetes is very limited. This commentary makes recommendations to help family carers feel better supported in their role. It also provides areas for future research.

This study aims to contribute to a better understanding of organizational strategies, attitudes and supports that can help people with intellectual disabilities to access competitive jobs through supported employment.

A multiple case study was carried out based on an intentional sampling involving the coworker mentors of six people with intellectual disabilities currently working in standardized environments. Semi-structured interviews were performed with the participants, and an inductive thematic analysis was used for data analysis.

The study identified five critical factors in the work of people with intellectual disabilities in standardized work environments, which potentially could act as facilitators or as obstacles, depending on how they were managed. The study also identified two key factors that acted mainly as facilitators and one as an obstacle.

The study reveals the existence of factors that sometimes act as facilitators and sometimes as obstacles, depending on how they are managed by the company leaders or the disabled worker himself.

The purpose of this paper is to provide a contextual and general overview of intellectual and developmental disability (IDD) in Nigeria.

The paper uses a chronological approach, providing an assessment of the understanding and treatment of people with IDD from the pre-colonial era to the present.

Nigeria has experienced a different historical path in terms of treatment and service provision for people with IDD compared to industrialised and developing countries such as the UK and Brazil.

Nigeria is the most populous country in Africa with an emerging economy and thus important to review the treatment and social inclusion of people with IDD in the country’s development.

The purpose of this paper is to adapt a social climate measure for use within a forensic intellectual and developmental disabilities (IDD) service and examine perceptions of social climate and the links with patient aggression across three levels of security.

Four staff participated in a focus group to discuss how the Essen Climate Evaluation Schema (EssenCES) could be adapted for IDD patients. Subsequently, a pilot study with three patients highlighted some difficulties in administering the adapted measure. Alterations in the administration of the measure were implemented with a further ten patients residing across three levels of security. The EssenCES was adapted to include more visual prompts to assist in the patients’ completion of the measure. The frequency of aggressive incidents in each of the three settings was also collated.

Statistical analysis revealed a non-significant trend where positive social climate ratings increased as the security level decreased. There was a significant difference in the frequency of aggressive incidents across the three levels of security; however, there were no significant relationships found between the questionnaire ratings and the frequency of incidents.

The results lacked statistical power due to the low number of participants. Further studies with adapted social climate measures need to be conducted to assess the implications of social climate on individuals with IDD in secure forensic services.

The study adapted and piloted a social climate measure for individuals in a forensic IDD service.

This study examined access to and quality of supports for families of adolescents with disabilities.

An online survey was completed by family members of transition-aged young adults who had participated in parent training sessions on topics related to transitions to adulthood. Survey responses came from all 50 states, the District of Columbia, and 4 U.S. territories.

More than one-third of families reported unmet information needs related to areas such as employment, housing, preparing for adult relationships, and preparing others to support the family members with disabilities. Families of younger transition-aged youth, youth with Autism Spectrum Disorder or other disabilities, and families with lower household incomes reported more unmet needs. The overall quality of services families reported receiving was 2.19 on a 4-point scale of 1 to 4. Parents reported needing more information and quality of supports related to the transition of youth from school to adulthood.

Given the scope of unmet needs, ongoing collaboration between schools, agencies, organizations, and other entities that serve families is critical. While schools play a key role in supporting the transition process, other organizations also have a role.

The results from this survey demonstrate that the need for support is not limited to youth with disabilities, but that family members also have information and support needs related to their roles as caregivers in the transition process.

This survey provides information about unmet needs and current services from a national sample that includes often underserved populations and includes sufficient numbers of respondents to allow comparisons between families, based on the type of disability their family member had.

This study aims to describe patients presented in an interprofessional, virtual education program focused on the mental health of adults with intellectual and developmental disabilities (IDD), as well as present interprofessional recommendations for care.

In this retrospective chart review, descriptive statistics were used to describe patients. Content analysis was used to analyze interprofessional recommendations. The authors used the H.E.L.P. (health, environment, lived experience and psychiatric disorder) framework to conceptualize and analyze the interprofessional recommendations.

Themes related to the needs of adults with IDD are presented according to the H.E.L.P. framework. Taking a team-based approach to care, as well as ensuring care provider knowledge of health and social histories, may help better tailor care.

This project draws on knowledge presented in a national interprofessional and intersectoral educational initiative, the first in Canada to focus on this population.