Background: Despite humanistic declarations regarding the rights of people with intellectual disability to live a full, meaningful life, in practice, resulting from dilemmas experienced by direct support provides, support is often limited to a focus on functional independence. The aim of this research was to define the theoretical principles by…

Unpaid (informal) family caregivers provide vitally important supports to people with intellectual and developmental disabilities (IDD), but receive little support or training. This study's aim was to examine how states across the nation supported informal family caregivers in their Medicaid Home- and Community-Based Services (HCBS) programs for…

Adult siblings are potentially important sources of care, support, advocacy, and friendship for their brothers and sisters with intellectual and developmental disabilities (IDD). Drawing on data about 851 adult siblings who completed an online national survey, we examined predictors and potential key moderators of siblings' mental distress,…

Background: People with intellectual disabilities are more likely to experience sleep problems, which can affect quality of life, physical health, mental health and well-being. Methods: An integrative literature review was conducted to investigate what is known about behavioural sleep disturbances in people with an intellectual disability. The…

Background: Effects of staff provided positive behaviour support (PBS) for individuals with intellectual disabilities are unclear. Method: Using a multicentre non-randomised cluster controlled design, 26 teams of residential group homes, including 245 staff members of 167 individuals with intellectual disabilities, were allocated to a PBS or…

This brief uses publicly available data from the National Core Indicators® (NCI)-IDD Staff Stability Survey to compare wages of direct support professionals (DSPs) to what people earn in other similar professions. It also puts them in context by comparing DSP wages to living wages--the cost of living based on typical expenses that meet minimum…

This study examined the agreement of perceived health-related quality of life (HRQOL) between caregivers and autistic children and adolescents (n = 133, 5-12 years) using the Pediatric Quality of Life Inventory Generic Core Scales, Fourth Edition (PedsQL 4.0). Results reveal good to excellent agreement over this age range across the total,…

The aim of this study was to investigate the oral health status and quality of life (QOL) of the parental caregivers of individuals with Down syndrome (DS), and to evaluate whether there is an association between these variables. The sample of this cross-sectional study was composed by parental caregivers of children with DS (CCDS) and parental…

Background: Psychological distress is highly noticeable among caregivers working in residential youth care (RYC). Maintaining and enhancing caregivers' professional mental health and quality of life is crucial to achieve effective outcomes in RYC. Nevertheless, trainings to protect caregivers' mental health are scarce. Considering the buffering…

Voices of people with disabilities in Kenya have yet to influence disability services and the issues affecting their lives. This is in part due to the dominance of disability discourses from Global North contexts from which international policies on disability such as the United Nations Convention on the Rights of People with Disabilities borrow…

Carers of adults on the autism spectrum often experience high levels of stress, worry, and caregiver burden. There are few studies identifying the predictors of carer mental well-being and none have been conducted in Australia. Data from the Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Autism in…

Background: Though the concept of encounter promises to move the field of social inclusion beyond the dichotomy of presence and participation, new work in political theory pushes encounter in a different direction, making freedom -- not inclusion -- the central value at stake. Methods: Interpretative video analysis was conducted on an online…

Background: This study aimed to examine the associations between individual staff and staff team characteristics and quality of life of individuals with intellectual disabilities and challenging behaviours. Method: With multilevel analyses, we examined educational level, experience, attitudes and behaviours of 240 staff members, in relation to…

We propose a justice-based partnership between employees and family members as a means to create services and support systems for people with intellectual disability, enhancing quality of life indicators. More specifically, we examine the links from mutual intergroup justice to three outcomes reported by family members: satisfaction with the…

Current mainstream care for autistic individuals is fragmented, narrow, and poorly individualized. To better describe cutting-edge autism care, we searched for care programs in the United States that had been collaboratively designed with patients and families and that carry the highest potential to improve the quality of life of autistic…