The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, carers, and self-advocates that actively promotes worldwide research and information exchange about intellectual and developmental disabilities. IASSIDD does not speak to the legitimacy or legality of any ongoing war or armed conflict. The purpose of this article is to promote respect for the human dignity of all persons with intellectual and other developmental disabilities, and their families, who find themselves in such situations. Therefore, the aim of this article is to outline the impact that military conflict has upon people with developmental disabilities, and their families, and to introduce the IASSIDD position statement that opposes the human cost from military conflict. During military conflict, many children and adults with intellectual and other developmental disabilities, and their families, experience marked suffering and maltreatment. This occurs due to an inability to access healthcare, education, and rehabilitation, and is also due to serious physical injuries, starvation, psychological trauma, and of course death, caused directly by conflict. This group is disproportionately affected due to preexisting vulnerabilities, and they are likely to experience human rights violations. Challenging behaviour is likely to increase, and quality of life decrease, during conflict. Addressing need during conflict requires a multifaceted approach that includes humanitarian aid, psychological support, social support, rehabilitation services, caregiver support, and coordinated international efforts and advocacy. There has been too little research about the experiences of people with intellectual and other developmental disabilities, and their families, during military conflict. We know little about the number of refugees with intellectual and other developmental disabilities fleeing, nor do we have robust data about the number of people with intellectual and developmental disabilities who die, during military conflict. The basic human rights of people with intellectual and other developmental disabilities, and their families, are violated during military conflict; this is contrary to the United Nations Security Council Resolution 2475 as these rights are enshrined in the United Nations Convention on the Rights of Persons with Disabilities and the United Nations Millennium Goals.

This article describes how rights, the United Nations Sustainable Development Goals (SDGs), and the quality of life (QOL) framework are closely interrelated. Although legislation can be used as a tool for the practical application of QOL principles, QOL assessment information is required to further develop legislation and monitor the fulfillment of laws, policies, and the SDGs. A validated QOL model, which provides a set of concepts that can be one useful way for understanding and assessing QOL, can also function to assess many of the rights and goals promulgated in the Convention on the Rights of Persons with Disabilities (CRPD) and in the SDGs. This article illustrates the overlap between the CRPD, SDGs and QOL using the #Rights4MeToo Scale, a new measurement instrument for people with intellectual and developmental disabilities (IDD). The instrument's value lies in its potential to: (a) raise awareness about the rights enshrined in the CRPD; (b) design, implement, and evaluate the effectiveness of interventions aimed at facilitating the exercise of those rights and the achievement of the SDGs; and (c) ultimately improve the QOL of people with IDD.

Quality of life has emerged as a dominant concept in the field of intellectual and developmental disabilities, and has been conceptualized, measured, and applied in various ways. To date, the importance to quality of life assessment of personal factors that take on extraordinary prominence in people's lives has only been superficially recognized. This article argues that four main types of personal factors are sometimes extraordinarily prominent and consequently become dominant factors in assessing quality of life: those that are important to all people but have become particularly important to some individuals and families; those that are not very important to most people but are extremely important to some, often because of specific interests and talents; those that result from both positive and negative, often temporary, situations that emerge in life; and those that are a consequence of personal characteristics. It is purported that measurement and application methods that recognize the importance of personal quality of life factors need to be developed and used as a component of an overall quality of life paradigm.

The COVID-19 pandemic caused much disruption in many global sectors, including education where schools were closed in most countries and children had to learn remotely from home. This was particularly challenging for children with special learning needs and disabilities, often already somewhat marginalized, as they were more likely to be left behind and less able to adapt easily to remote online learning. This study inquired into the experiences of 67 parents from Slovenia and 15 parents from Canada who helped their children with special learning needs or disabilities learn remotely. Parents in both countries identified several specific advantages and disadvantages to learning remotely from home. The Slovenian children spent more hours per day at their lessons and attended more lessons than the Canadian children. Both samples of parents received some support from their schools, although the Slovenia parents perceived these as more satisfactory. This study provides a unique opportunity to study the effects of remote learning during a prolonged crisis situation, and it provides valuable lessons for how both families and school personnel can work to improve the potential educational experiences of students who are required to learn remotely. A 12-point framework for planning for future emergencies is provided.

In recent years, interest for siblings of people with intellectual and developmental disabilities (IDD) has increased. Scholars from different backgrounds have investigated the particular experiences of siblings of all ages. However, less is known about their quality of life perceptions as siblings. The aim of this doctoral thesis is to explore siblings’ quality of life perceptions from their own voice and through a family quality of life lens. A systematic review of the literature was performed to find relevant information about quality of life perceptions of siblings of people with IDD in the context of a family. It highlighted the lack of research from non-English speaking countries and research with younger siblings. Consequently, interviews and discussion groups with young siblings (5-11 years old) living in Catalonia (northeast Spain) were conducted to explore their perceptions of quality of life as siblings and the influence of family dynamics and parental performances on their quality of life. Despite the cultural, religious and linguistic characteristics of Catalonia, findings were in line with those of similar research; revealed the particularities of the experience of having a brother or a sister with IDD and the singular effect external influences might have on siblings’ perceptions of quality of life. Additionally, results have shown siblings mature giving rise to critical views regarding their families. It is important then to listen to siblings of all ages and to spread awareness around the necessity that researchers, practitioners and policymakers consider siblings’ views and perceptions, in order to provide siblings and their families with better services and support.

The paper reviews the international literature on quality of life (QoL) for persons with neurodevelopmental disorders (NDD) in order to define the theoretical frame for optimal assessment. The application of the QoL approach to assessment procedures should be based on three main aspects: shared QoL, personal QoL and family QoL. The first aspect refers to characteristics of individual life that are shared with other people. The second aspect proceeds from the fact that each individual has a changing set of personal attributes that determine the subjective experience of life. In the third aspect the previous two are applied to the family that includes a person with NDD. Disability impacts the whole family and the determination of appropriate conceptualization of family outcomes requires an understanding of the impact of members with a disability on family QoL. At any level, it seems best to take a comprehensive approach to assessing QoL, integrating subjective and objective aspects, self-reports and hetero-evaluations. The QoL approach is above all a way to explore the rich intricacies of personal quality of life. Such assessment may be used effectively with people with NDD, independently from the severity of their functioning impairment. Individuals with profound ID may express their inner states through consistent behavioural repertoires, which can be discerned by persons closest to them and validated by more independent others. Attention must be paid in using non-generic instruments, such as those that measure health-related QoL. Although they do focus on the individual person, they still support a theoretical perspective of QoL that has not departed significantly from the traditional medical approach. Currently available generic tools, although they have some common conceptual and evaluation characteristics, still show considerable differences in the areas to be included in "shared QoL", the dimensions used to evaluate "Individual QoL", and the role attributed to indicators of QoL. QoL assessment should not represent a classification of individuals, services or systems, but it should help provide, within service systems and organizations, a value system that is consistent with those values held by people with NDD.

Issues The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior. Findings The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning. Conclusions Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

Quality of life is a concept that has had robust development and application in the field of intellectual disability in recent decades. It functions as an apt goal for individuals to enhance their lives, as well as for policy and disability support. Quality of life helps address ethical issues by acting as a key guidepost in ethical considerations. Current philosophical and human rights approaches to disability support the view that intellectual disability is no reason to assume poor quality of life. Moreover, individuals with intellectual disabilities themselves typically rate their own quality of life quite high. Similarly, families perceive disability as contributing to family quality of life in some ways, although this is tempered by social constructs, especially normalcy, that support marginalization and discrimination. Disability Studies, and critical disability theory that constitutes much of its foundation, offer an alternative perspective of intellectual disability that values its contribution to larger society-intellectual disability as a positive and necessary aspect of the diversity within the human mosaic. It is argued that this perspective of intellectual disability negates the necessity of new eugenics practices.