Journal of Policy and Practice in Intellectual Disabilities最新文献

People with disability continue to face barriers to substantive and meaningful inclusion in accommodation and community settings. The aim of this systematic review was to examine the characteristics of the literature on ‘inclusion’, ‘integration’, ‘exclusion’, and ‘segregation’ for people with disability in accommodation and community settings. This literature is important because it provides the evidence base that informs policy and practice. We identified 457 articles that primarily related to the experiences of people with intellectual disability and psycho-social disability. We found: (1) the volume of publications relating to the ‘inclusion’, ‘integration’, ‘exclusion’ and ‘segregation’ of people with disability in accommodation and community living settings has increased each year since 2006; (2) high-income western countries were overrepresented in research outputs; (3) most research has been undertaken in the health sciences; (4) only 30% of literature directly engaged with people with disability; (5) less than 50% of the publications we reviewed (223 out of 457 manuscripts) identified inclusion, integration, exclusion and segregation as their primary focus; (6) ‘inclusion’, ‘integration’, ‘exclusion’ and ‘segregation’ were predominantly used in the context of specific populations—psycho-social disability and intellectual disability; (7) there is great variation in the attention paid to the experiences of different communities of people with disability; and (8) the notable absence of current scholarly literature on the experiences and outcomes of people with disability living at home with parents and/or siblings. Each of these findings have important implications for the research agenda, policy, and practice.

While remote monitoring supports have many benefits and the use of remote supports for people with intellectual and developmental disabilities (IDD) is increasing, they are a relatively new technology for IDD service provision and yet to be widely available. However, during the COVID-19 pandemic, there was a rapid uptake in technology in Home and Community-Based Services (HCBS) for people with IDD, including the expansion of telehealth and remote supports. The aim of this study was to examine if, and, how, remote monitoring support services were provided to people with IDD in HCBS across the United States in fiscal year (FY) 2021. To do so, we analyzed Medicaid HCBS 1915(c) waivers for people with IDD. In FY 2021, 10 states (22.22%) provided remote support services to people with IDD through 19 HCBS waivers (17.76%); they provided a total of 36 different remote monitoring services. A total of $22.4 million was allocated for remote support services for 3039 people with IDD. We found states often provided remote support services to people with IDD in HCBS to promote independence, health, and welfare, and reduce and/or replace services. States implemented a number of rules and requirements to help keep people with IDD safe while remote support services were being used, including informed consent, encryption, emergency backup plans, and the prohibition of use in private spaces. Further attention to remote supports in HCBS is necessary to ensure that people with IDD who want to utilize these services are able to do so.

Individuals with intellectual disability living in a care facility are at high risk of sexual abuse. Formal policies on sexual abuse within these care facilities and their effective implementation are a prerequisite to reducing the risk of sexual abuse in this group. The present study aimed to determine the state of affairs in this regard in the Netherlands and identify areas of improvement regarding both policy formulation and implementation. An online survey was sent to the management boards of 129 Dutch care facilities for individuals with intellectual disability. Sixty-nine managers completed the survey on behalf of their care facility. Descriptive statistics were used to characterize the state of affairs regarding policies on sexual abuse. Areas of improvement reported by the managers were examined qualitatively by thematic analysis. Most care facilities complied with the national legal requirements on sexual abuse, which include the availability of a protocol on sexual abuse and mandatory reporting. It varied across the care facilities to what extent the protocols on sexual abuse are brought to the staff's attention and used in practice. About half of them provided no staff training on the protocol on sexual abuse, while nearly one-third of the care facilities provided no organizational protective factors on sexual abuse, such as a special-task official on sexual abuse, sexuality or sexual abuse department, or cooperation with the vice squad. Most areas of improvement reported by the managers pertained to the need for staff training and the improvement of practical use of policies and protocols on sexual abuse. In conclusion, the availability of policies and protocols on sexual abuse in care facilities for individuals with intellectual disability does not guarantee a caring culture in which these policies and protocols are implemented effectively, and in which sexual abuse is prevented and detected in a timely way.

In 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.

Although increasing the healthcare workforce serving those with intellectual and developmental disabilities (IDD) remains critical, we know little about how current healthcare workers began serving this population. Surveying 153 U.S.-based healthcare professionals who work with persons with IDD, this study examined the presence, influence, and nature of their disability-related experiences. The most common and influential experiences involved pre- and post-professional disability training. Less frequent, albeit influential, experiences included being a sibling or having other family members with disabilities and working at disability-related camps. First encounters with persons with IDD occurred during the child and adolescent (i.e., preprofessional) years for 38% of respondents, with slightly lower percentages occurring earlier (34%, involving family) or later (28%, during pre- or post-professional training). Those with family or child–adolescent first encounters more often also reported disability experiences in subsequent periods. Respondents spoke of the formative effects of hands-on disability training as well as of family and child–adolescent experiences, although some disability-related careers also featured an element of chance. Practical and policy implications are discussed.

Promoting the flourishing of people with intellectual and developmental disabilities (IDD) requires consideration of the same breadth of life domains that might matter to any other person. Like anyone else, many people with IDD (as well as their families) consider spirituality and religious participation to be central to their personal thriving. Yet, this dimension of their lives is often overlooked or ignored in the areas of assessment, planning, practice, and support. This article addresses the salience of spirituality and religion; their impact on QOL; the complexities of addressing these areas among people with IDD; the ways in which they can be conceptualized and assessed; and implications for policy and practice.

Trauma informed care has become an evidenced based approach for inpatient and residential services for people in the general population who are likely to have been impacted by trauma. Given the increased vulnerability to psychological trauma for adults with an intellectual disability, it should follow that residential services for adults with an intellectual disability would also benefit from a trauma informed care approach. Two focus groups and individual interviews with seven adults with an intellectual disability and six workshops with seven service providers were conducted to co-produce a trauma informed care framework for residential services that was evidence-based and guided by established models (MRC, Developing and evaluating complex interventions, London: MRC & NIHR, 2019; Wight et al., Journal of Epidemiology and Community Health, 70, 520–525, 2016). The framework was developed into four chapters: ‘Setting the context’; ‘Organisational change’; ‘Workforce development’; and ‘Trauma focussed services’. A logic model outlining the mechanisms of change was refined over the course of the co-production workshops. This is the first study to develop and co-produce a trauma informed care framework for residential and supported living accommodation for adults with an intellectual disability. The framework has implications for local policy and practice in its current cultural context. Future development is required to operationalise and test the framework and to explore its adaptability to international contexts.

Children with intellectual disability receiving residential support, according to the Swedish Disability Act, need substantial support to cope with everyday life. These children have cognitive and communicative limitations, entailing difficulties for staff in consulting the children regarding their support arrangements. In addition, due to lack of research there are knowledge gaps and uncertainties concerning how staff can provide the children's support. To deliver high qualitative support, research suggests that disability organisations should (1) continuously work with quality improvement, (2) adopt a multi-dimensional framework that explains human functioning and disability as a basis for understanding individual support needs, and (3) use person-centred approaches. Based on these principles, this study has applied a realist evaluation to identify enablers and barriers during the implementation of an improvement programme aimed at improving staff's ability to provide support to children living in special residences.

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.