Field Of Intellectual Disability Research Articles

Vocational Calling, Meaningful Work, and Job Satisfaction Among Disability Services Providers

Abstract Recruiting and retaining a strong disability workforce remains an enduring concern in the field of intellectual and developmental disabilities. Yet little attention has focused on the sense of calling that disability service providers have to this important work and its relationships to their job satisfaction. We surveyed 269 disability service providers to examine whether they (a) perceive a calling in their life, (b) are living out that calling in their current work, (c) find meaning in their career, and (d) experience job satisfaction. The experience of both having and living out one’s calling in their current work was especially prominent among participants. Likewise, most providers indicated they drew considerable meaning and purpose from their work. Perceiving a calling contributed to higher job satisfaction through living out one’s calling and finding meaning in one’s work. Some variations in ratings were associated with personal demographics (i.e., sex, years of experience). These findings provide new insights into what might draw disability service providers into this work or sustain their commitment amidst challenging and changing working conditions. We highlight areas for research and practice aimed at place of calling within efforts to strengthening recruitment and retention.

A Legacy of Revision: Maintaining Professional Expertise Over the Changing Diagnosis and Classification of Intellectual Disability in the United States

ABSTRACT Drawing on publications produced by one of the oldest and leading professional associations dealing with intellectual disability (ID), this paper explores the continual maintenance of expertise over potentially contested classifications. I find that, given unforeseen difficulties among professionals in actually defining and classifying what is currently known as ID as well as the later addition of new stakeholders in the advocacy field, professionals’ understanding of revision shifted over time from a problem to ultimately be solved to a “legacy of revision” used to explain past changes in criteria and anticipate further ones. In analyzing this legacy, I focus on professionals’ understanding of several shifts surrounding diagnostic and classification criteria over the course of the twentieth and into the twenty-first century. To the extent that previous literature suggests that ambiguities surrounding classification are to be expected, this paper shows how professionals in the ID field drew on resonant themes and rhetorically (re)framed past and future changes in their maintenance of expertise in a field that dramatically shifted in what was acceptable in the treatment of people with disabilities.

Exploring independent living initiatives for people with intellectual disabilities: insights from the Spanish case

In the past four decades, Independent Living (IL) has gained prominence in inspiring services for people with intellectual disabilities. Yet, its practical application faces challenges within a field still influenced by medical-rehabilitative and paternalistic perspectives. This study seeks to explore the fundamental characteristics that IL models assume within the field of intellectual disabilities, focusing on the Spanish experience, identifying pioneering projects, influential models, and their ripple effects. A comprehensive mapping of IL projects has been conducted, analyzing publicly available information on 86 identified cases. In seven significant cases, in-depth interviews were conducted with people responsible for their development. Our analysis sheds light on some emerging tensions, with a focus on what is identified as a family-centered approach, an emphasis on skills-oriented services, and an overreliance on housing accessibility. Finally, this paper offers recommendations to enhance these initiatives and foster the integration of IL in the intellectual disability context.

Simulation to improve healthcare pathway and inequities for people with disabilities.

Introduction: The Convention on the Rights of People with Disabilities (1) reported that people with disabilities do not have equitable access to health services. People with intellectual disabilities, especially the ageing, are more susceptible to somatic disease and other lifestyle diseases than the general population (2, 3, 4, 5, 6). 
 General practitioners' (GP) competence in the field of intellectual disability is largely experience-based, not systematic and research-based (7). In municipalities, approximately half of healthcare workers (HCWs) at municipal housing for people with intellectual disabilities are unskilled. These HCWs have experienced not being taken seriously when calling either their patients’ GP or accident and emergency (A&E) department to report that the resident is 'not well', resulting in residents receiving inadequate healthcare. Municipal leaders and educators decided to address the inadequate clinical observation and communication skills among HCWs with a simulation-based training program (SBTP), to improve competence and treatment of residents when escalating levels of care.
 Methods: Based on national recommendations about ""Early detection of deteriorating condition"" and the urgency of the covid-pandemic, the SBTP was quickly rolled out to all HCW. The SBTP consisted of both theoretical teaching and e-learning in ABCDE, training in the tool NEWS2, as well as the communication technique ISBAR. Baseline NEWS2 scores were established for all residents.
 Based on positive experience with SBTP in donning and doffing of personal protection equipment (8) in the municipality early in the pandemic, and uncertainty about safer care for sick corona patients in residential homes, leaders requested continued use SMTP to improve observational skills.
 Results & Discussion: Evidence of improved competency at work and resulting improved escalation of care came fast.
 One example was of a resident with backpain whose relatives’ recommended painkillers. HCWs performed NEWS2 scoring, discovered pathological changes, contacted A&E, received treatment advice, continually followed up on NEWS2 measurements, secured ambulance help & reaction based on baseline NEWS2, and admission where sepsis was discovered. Similarly, another group of HCWs performed NEWS2 scoring on a patient with presenting manic symptoms, discovered clinical signs of somatic illness, which lead to a completely different medication than expected. These cases were seen as post-SBTP improvements in HCWs behavior, and patient safety.
 
 SBTP to improve observational skills in the municipality has led to better differential diagnosis in the early stage, more precise communication with GP and A&E which in turn has led to better healthcare pathways for a vulnerable patient group.
 Keywords: simulation, observational competence, competence, health rights

The humanistic perspective as “a lighthouse” for the perception of QOL/FQOL and its application

AbstractQuality of life (QOL) has become an increasingly important topic in the field of intellectual and developmental disabilities. Those efforts have included the structuring of models of QOL and more recently Family Quality of life (FQOL). The time has arrived to examine other developments and consider their place in a QOL paradigm. In this article, we have described one of the aspects of QOL that does not appear to be formally or directly structured into models of QOL, namely the role of the humanistic perspective as “a lighthouse” concept for the perception of QOL/FQOL and a vehicle for its application in practice. It is recognized that many researchers and practitioners have considered or practised a humanistic approach but the core beliefs and elements on humanism have received less specific or detailed attention in the QOL literature. This article proposes humanistic philosophy to be the basis for defining humanistic theoretical principles and guidelines for practice, and to be an important vehicle for operationalizing and applying quality of life.

Development of the Tiered Onsite Evaluation Tool for Organization-Wide Person-Centered Positive Behavior Support

Positive behavior support (PBS) is an evidence-based framework for improving quality of life and preventing challenging behavior that is often implemented in combination with person-centered practices in the intellectual and developmental disability (IDD) field. Recently, state agencies and organizations supporting people with IDD have adopted a system-wide approach to PBS, much like multi-tiered school-wide PBS for youth in educational settings (e.g., SW-PBIS). Fidelity tools for guiding team implementation and action planning are essential throughout every phase of implementation in any innovation. Although such tools exist for SW-PBIS, no widely used measure currently exists for assessing the implementation of organization-wide PBS in the adult IDD field. This article describes the initial development of a fidelity of implementation tool used to evaluate organization-wide implementation of PBS and person-centered practices in community settings. A Midwestern State Department of Human Services and a University Center on Developmental Disabilities (UCEDD) in the United States partnered to complete this project. The authors discuss the exploratory and descriptive evaluation process involved in the initial development of the tool and share data for 10 provider organizations over a 6-year period of implementation. A descriptive case study using mixed measures is used to provide more details about the implementation of PBS in one agency to show the types of changes captured by the fidelity tool.

Continuing conceptualising QOL through application to lives of young adults with Down syndrome

AbstractQuality of Life (QOL) has been used as a sensitising concept for decades, inviting all to consider the potential for individuals with intellectual and developmental disabilities to live a life full of meaning and purpose. This article presents the outcomes of our deliberations on domains of QOL undertaken for a study investigating lives of young adults with Down syndrome. Various groups have published domains and from these we distilled a list of six: Physical well‐being, Emotional well‐being; Self‐determination; Material well‐being; Personal beliefs and development; and Social inclusion. Our synthesis of domains raised two issues for further deliberation in the community of QOL scholars in the field of intellectual and developmental disability: the place of Information and Communication Technology (ICT) and Rights. ICT has not been considered as a domain but we argue it could be. Rights have been included as a domain by some researchers in previous conceptualisations but we do not. Instead we suggest they may be better placed as an underpinning principle, with fundamental impact on all aspects of QOL. A conclusion we are left with is that domains, while helpful for research, can never be a fixed list. What matters to individuals and society in general in framing lives of meaning and purpose will change over time. Even so, there is still value and need for setting domains for specific research studies.

Multiple molecular diagnoses in the field of intellectual disability and congenital anomalies: 3.5% of all positive cases

PurposeWide access to clinical exome/genome sequencing (ES/GS) enables the identification of multiple molecular diagnoses (MMDs), being a long-standing but underestimated concept, defined by two or more causal loci implicated in...

The Quality of Life Supports Model as a major component in applying the quality of life paradigm

AbstractSocial change is built on paradigms and models. A paradigm needs an operational action model to successfully implement the paradigm, and an operational model needs a paradigm to give it credibility and content. This article describes the Quality of Life Supports Model (QOLSM) as a major pathway for applying the quality of life (QOL) paradigm. The QOLSM integrates the concepts of QOL and individualized supports. The article describes and illustrates: (a) the four elements of the QOLSM (core values, individual and family QOL domains, systems of supports, and facilitating conditions); and (b) the use of the QOLSM in the field of intellectual and developmental disabilities (IDDs) as a framework for supports provision. The article also discusses how the QOLSM represents a value‐based and actionable model that should be effective for solving problems regarding services and supports to people with IDD, developing new knowledge, making meaningful change, being evaluated, and contributing both theoretically and operationally to the field.

Self‐determination and quality of life of people with intellectual and developmental disabilities: Past, present, and future of close research paths

AbstractIn recent decades, research in the field of intellectual and developmental disabilities has targeted self‐determination and quality of life constructs. Quality of life has been extensively studied within various theoretical frameworks. It has been used to guide the provision of appropriate support in daily life. In addition, a vast body of scientific literature has focused on the theoretical and practical underpinnings of self‐determination as a construct in itself. To understand how self‐determination is an essential supporting concept in the quality of life paradigm, this brief report unravels the complementary but unique role that each construct (quality of life and self‐determination) embodies. Furthermore, we discuss the role of self‐determination in the scientific literature and in the quality of life of people with intellectual and developmental disabilities, reflecting on how both lines of research can converge and be aligned from a common approach. The aim is to drive attention to areas of future research development that strengthen understanding of quality of life and the self‐determination construct.

Correction to: Barriers to volunteering in the field of intellectual disability: a cluster analysis

Correction to: Barriers to volunteering in the field of intellectual disability: a cluster analysis

Understanding How Self-Determination Affects the Quality of Life of Young People with Intellectual Disability

ABSTRACT Quality of life (QoL) has been extensively studied within the field of intellectual disability, with various theoretical frameworks being developed to guide the provision of appropriate supports in daily life. However, the role that self-determination can play in the QoL of adolescents with intellectual disability has received little attention. This study explores the impact of personal characteristics (age, gender, intellectual disability level, and diagnosis of autism spectrum disorder) and the context-related variable of self-determination on QoL, overall and at domain level, in 100 adolescents with intellectual disability in a single school. The KidsLife scale of QoL and the AUTODDIS scale of self-determination were applied, with the participants’ teachers acting as respondents. The variable of self-determination had the highest influence on QoL, being positively related to all the domains under investigation. A diagnosis of autism spectrum disorder was positively related with Personal Development, Material Well-being, and Social Inclusion domains. Intellectual disability severity only had a negative relationship with QoL total level when not considered simultaneously with self-determination. We discuss the role that self-determination plays in the quality of life of youth with intellectual disability.

Development and initial psychometric properties of the Warwick-Edinburgh Mental Wellbeing Scale-Intellectual Disability version.

The Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS; Tennant et al., 2007) is yet to be validated in the intellectual disability (ID) population. The aim of this study was to report the development process and assess the psychometric properties of a newly adapted version of the WEMWBS and the Short WEMWBS for individuals with mild to moderate IDs (WEMWBS-ID/SWEMWBS-ID). The WEMWBS item wordings and response options were revised by clinicians and researchers expert in the field of ID, and a visual aid was added to the scale. The adapted version was reviewed by 10 individuals with IDs. The measure was administered by researchers online using screenshare, to individuals aged 16+years with mild to moderate IDs. Data from three UK samples were collated to evaluate the WEMWBS-ID (n=96). A subsample (n=22) completed the measure again 1 to 2weeks later to assess test-retest reliability, and 95 participants additionally completed an adapted version of the adapted Rosenberg Self-Esteem Scale to examine convergent validity. Additional data from a Canadian sample (n=27) were used to evaluate the SWEMWBS-ID (n=123). The WEMWBS-ID demonstrated good internal consistency (ω=0.77-0.87), excellent test-retest reliability [intraclass correlation coefficient (ICC)=.88] and good convergent validity with the self-esteem scale (r=.48-.60) across samples. A confirmatory factor analysis for a single factor model demonstrated an adequate fit. The SWEMWBS-ID showed poor to good internal consistency (ω=0.36-0.74), moderate test-retest reliability (ICC=.67) and good convergent validity (r=.48-.60) across samples, and a confirmatory factor analysis indicated good model fit for a single factor structure. The WEMWBS-ID and short version demonstrated promising psychometric properties, when administered virtually by a researcher. Further exploration of the scales with larger, representative samples is warranted.

The Right to Science: Centering People With Intellectual Disability in the Process and Outcomes of Science.

The right to science has been identified in multiple human rights treaties; however, there has not been a clear framework for how governments or research organizations can advance this right particularly ensuring equitable engagement of people with intellectual disability (ID) in the process of scientific research. Although the feasibility and impacts of engaging people with ID in the process of science have been repeatedly demonstrated there remain systemic barriers including ableism, racism, and other systems of oppression that sustain inequities. Researchers in the ID field must take steps to dismantle systemic barriers and advance participatory approaches that advance equity in the process and outcomes of science.

The UK psychiatrists' experience of rationalising antipsychotics in adults with intellectual disabilities: A qualitative data analysis of free-text questionnaire responses.

Overprescribing of off-licence psychotropic medications, particularly antipsychotics, for challenging behaviours in people with intellectual disabilities without a psychiatric disorder is a significant public health concern. In the United Kingdom, the National Health Service England launched an initiative in 2016, 'STopping Over-Medication of People with learning disabilities, autism or both (STOMP)', to address this concern. STOMP is supposed to encourage psychiatrists in the United Kingdom and elsewhere to rationalise psychotropic medication use in people with intellectual disabilities. The current study aims to gather UK psychiatrists' views and experience of implementing the STOMP initiative. An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disabilities (estimated 225). Two open-ended questions allowed participants to write comments in response to these questions in the free text boxes. One question asked about the challenges psychiatrists faced locally to implement STOMP, and the other asked for examples of successes and positive experiences from the process. The free text data were analysed using a qualitative method with the help of the NVivo 12 plus software. Eighty-eight (estimated 39%) psychiatrists returned the completed questionnaire. The qualitative analysis of free-text data has shown variation within services in the experience and views of the psychiatrists. In areas with good support for STOMP implementation provided through adequate resources, psychiatrists reported satisfaction in the process with successful antipsychotic rationalisation, betterlocal multi-disciplinary and multi-agency working, and increased awareness of STOMP issues among the stakeholders such as people with intellectual disabilities and their caregivers and multidisciplinary teams, and improved quality of life caused by reduced medication-related adverse events in people with intellectual disabilities. However, where resource utilisation is not optimum, psychiatrists seemed dissatisfied with the process with little success in medication rationalisation. Whereas some psychiatrists are successful and enthusiastic about rationalising antipsychotics, others still face barriers and challenges. Much work is needed to achieve a uniformly positive outcome throughout the United Kingdom.

Evaluating workforce needs for higher specialist training for psychiatry of intellectual disability in Kent, Surrey and Sussex: a workforce scoping service evaluation

PurposeWhilst recruitment and retention of high-quality staff is vital to providing a good service, at the time of the evaluations, Kent, Surrey and Sussex (KSS) was the only area of the UK without a Higher Specialist Training (HST) scheme in intellectual disability (ID). The purpose of this project was to identify barriers to recruitment and support the need for change.Design/methodology/approachThis evaluation included conducting interviews with 16 practitioners in the region with links to ID to consider the gaps in training and find solutions.FindingsFour themes were identified, namely, good experiences are important to recruiting people into the ID field; bad experiences or lack of exposure to people with ID are likely to prevent engagement with this field; there is an ongoing need for specialist psychiatrists in ID services; and there is a developing need for specialists in neurodevelopmental disorders. Finally, the challenge means we need to think differently about developing a workforce. Seven recommendations to support workforce delivery in KSS were developed.Originality/valueThis paper highlights an important rationale for ongoing need for HST in ID work and also reasons to engage people in this field. This has not been undertaken in the ID field in this way previously.

The Genetics of Intellectual Disability

Intellectual disability (ID) has a prevalence of ~2-3% in the general population, having a large societal impact. The underlying cause of ID is largely of genetic origin; however, identifying this genetic cause has in the past often led to long diagnostic Odysseys. Over the past decades, improvements in genetic diagnostic technologies and strategies have led to these causes being more and more detectable: from cytogenetic analysis in 1959, we moved in the first decade of the 21st century from genomic microarrays with a diagnostic yield of ~20% to next-generation sequencing platforms with a yield of up to 60%. In this review, we discuss these various developments, as well as their associated challenges and implications for the field of ID, which highlight the revolutionizing shift in clinical practice from a phenotype-first into genotype-first approach.

Experiencias de personas adultas con discapacidad intelectual sobre el derecho a la vida independiente: Un estudio de caso

In the field of intellectual disability, the development of an independent life has been configured as a human and civil right that allows these people to articulate desired life plans. Despite the advances, at the international level, research on aspects related to independent living in people with intellectual disabilities continues to be very scarce. Generally, the approaches to the study of this construct are based on broader investigations dedicated to evaluating the levels of quality of life or self-determination of this population in residential services or sheltered housing. Precisely, this study analyzes, through a case study, the meanings that an advisory group made up of eight adults with intellectual disabilities has on the concept of independent living in the Chilean context in order, on the one hand, to identify relevant elements for the definition of the construct from the perceptions and experiences of this population; and on the other, to propose guidelines at various levels that allow progress in the realization of this right. To collect the data, a semi-structured group interview was designed whose questions were grouped around four themes: previous conceptions of the participants about the construct of independent life, satisfaction with life and possibilities of the context for the development of personal independence, role of family, friendship and partner in independent life, and opportunities of the work context for the achievement of personal independence. During the interview, another strategy was incorporated in which visual language gained more relevance. Specifically, a set of ten moodboards were used that allowed participants to delve into the different topics addressed. The results of the code validation process were calculated using Krippendorff's alpha statistics (.954) and Cohen's kappa (.953), which showed a high level of inter-judge agreement. As a result of this process, categories (N = 6) and subcategories (N = 17) were established. The results show how various needs, barriers and facilitators for the development of independent life are identified from the interviews of the interviewees. Among the main needs is the performance of a paid work activity or the establishment of solid affective relationships. With regard to the barriers that hinder personal independence, the most notorious are related to the difficulty of being financially independent or to the lack of accessibility in the work environment. Regarding the elements that facilitate the development of an independent life, the role of the couple stands out as a constant figure of support for independence and personal empowerment. These results suggest some guidelines for planning interventions on this construct. Among others, they should seek the acquisition of skills that strengthen the self-care capacity of this group; should promote increased opportunities for making meaningful choices in the workplace, personal and community; and they must adapt to the spaces in which people with intellectual disabilities operate in adulthood. On the other hand, it is assumed that one of the main limitations of this research is that the results are not generalizable. However, this study has some strengths. Among others, it contributes to enriching the bulk of research on independent living, this being an aspect barely addressed in the literature. It also complements the results of other research regarding the elements that can condition the development of skills for personal independence. This allows for the design of interventions that provide opportunities for independent living based on the felt needs of these people. In addition, it raises future lines of research related, for example, to the importance of the informed choice of the residential environment or to the study of the possibilities of the digital world as an incident phenomenon in the acquisition of skills for personal independence. https://doi.org/10.16888/interd.2023.40.2.18

Behavioural adjustment of children with intellectual disability and their sibling is associated with their sibling relationship quality.

Understanding sibling relationship quality is important, as it is associated with mental health outcomes in both childhood and adulthood. Arguably, these relationships are even more important for individuals with intellectual disability, as siblings can be important sources of care, support, advocacy and friendship for one another. The intellectual disability field, however, has a tendency to assume that the relationship lacks reciprocity, and that it is the sibling with intellectual disability who affects the sibling, and that this effect is somehow 'negative'. We examined whether the behaviour problems and prosocial behaviour of 500 child sibling pairs, where one child has an intellectual disability, were associated with their sibling relationship quality. Measures included the Strengths and Difficulties Questionnaires and the Sibling Relationship Questionnaire. Family poverty, the gender of both children, birth order and whether the child with intellectual disability had autism or Down syndrome were also included in the analyses. Confirmatory factor analysis indicated an adequate model fit for the latent variables measuring sibling relationships. The final structural model found that the prosocial behaviour and internalising problems of the children with intellectual disability, their typically developing siblings' prosocial behaviours and sibling birth order were associated with intimacy-companionship in the sibling relationship. The internalising, externalising and prosocial behaviours of the children with intellectual disability, their siblings' externalising behaviours and sibling birth order were associated with antagonism-quarrelling in the sibling relationship. We found that the behaviours of both the child with intellectual disability and their sibling were associated with both 'positive' and 'negative' dimensions of their sibling relationship. This indicates a bidirectional and reciprocal effect.

Reference Based Pricing for Employee Healthcare Needs

Agencies that provide supports and services to individuals who have intellectual and/or developmental disabilities operate within a system in which governmental agencies typically control the price to be paid for the provision of these supports and services. One consequence of the imposition of these fixed prices is a chronic shortage of those staff who provide direct supports and services to people who have disabilities. Because agencies have no control over the prices they can charge for the provision of supports and services, they are unable to raise staff wages sufficiently to create an equilibrium between supply of and demand for staff. Instead, equilibrium must be sought by cost reduction measures. Strategies to reduce costs are essential to the continuation of this service model as substantial increases in governmental funding are unlikely. Reference based pricing for employee health insurance is described and proposed as a cost reduction strategy within the intellectual and developmental disability community. An example of the adoption of this strategy within the intellectual disability field is provided.