COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare.  Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff.  Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs.

BACKGROUND: With increasing reductions in funding for social care across many countries, the need to ensure that resources are used to best effect is becoming increasingly important, in particular for those with severe and complex needs. METHODS: In order to explore the outcomes and costs of skilled support for this group of people, quality of life was assessed for 110 people in 35 services in England. Information on costs was also collected. RESULTS: People who received consistently good active support experienced better outcomes in terms of several quality of life domains. Good support did not require significantly more staff time, and there was no evidence of higher total costs for those receiving good support. CONCLUSIONS: The inclusion of active support in government guidance and local commissioning practices related to people with severe intellectual disabilities is likely to improve user outcomes. Observation should be an important element in measuring service quality.

COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

Use of quality information in decision-making about health and social care services--a systematic review.

User choice and personalisation have been at the centre of health and social care policies in many countries. Exercising choice can be especially challenging for people with long-term conditions (LTC) or disabilities. Information about the quality, cost and availability of services is central to user choice. This study used systematic review methods to synthesise evidence in three main areas: (i) how people with LTC or disabilities and their family carers find and access information about the quality of services; (ii) how quality information is used in decision-making; and (iii) what type of quality information is most useful. Quality information was defined broadly and could include formal quality reports (e.g. inspection reports, report cards, etc.), information about the characteristics of a service or provider (e.g. number and qualifications of staff, facilities, etc.) and informal reports about quality (e.g. personal experience, etc.). Literature searches were carried out using electronic databases in January 2012. Thirteen papers reporting findings from empirical studies published between 2001 and 2012 were included in the review. The majority of papers (n = 9) had a qualitative design. The analysis highlighted the use of multiple sources of information in decision-making about services and in particular the importance of informal sources and extended social networks in accessing information. There is limited awareness and use of 'official' and online information sources. Service users or family carers place greater emphasis on general information and structural indicators. Clinical or quality-of-life outcomes are often difficult to interpret and apply. Trust emerged a key issue in relation to quality information. Experiential and subjective information is highly valued and trusted. Various barriers to the effective use of quality information in making choices about services are identified. Implications for policy and future research are discussed.

Dispersed or clustered housing for adults with intellectual disability: a systematic review.

BACKGROUND: The purpose of this review was to evaluate the available research on the quality and costs of dispersed community-based housing when compared with clustered housing. METHODS: Searches against specified criteria yielded 19 papers based on 10 studies presenting data comparing dispersed housing with some kind of clustered housing (village communities, residential campuses, or clusters of houses). The studies reported the experience of nearly 2,500 people from four different countries. RESULTS: In five of eight quality of life domains there were no studies reporting benefits of clustered settings. In respect of interpersonal relations, emotional, and physical well-being, clustered settings had some advantages. However, in many of these cases the better results refer only to village communities and not to campus housing or clustered housing. In terms of costs, clustered housing was usually less expensive because of lower staffing levels. In two of the three studies that examined costs controlling for user characteristics, there was no statistically significant difference. CONCLUSION: Dispersed housing appears to be superior to clustered housing on the majority of quality indicators studied. The only exception to this is that village communities for people with less severe disabilities have some benefits; this is not, however, a model which can be feasibly provided for everyone. Clustered housing is usually less expensive than dispersed housing but this is because it provides fewer staff hours per person. There is no evidence that clustered housing can deliver the same quality of life as dispersed housing at a lower cost.