The Ambiguous Impact of Performance Measurement on Service Quality.

Background: Performance measurement is growing in importance as a management tool in services for disabled people. Aim: The aim of this article is to add to the existing literature by exploring (a) the motivation for the introduction of such measurements, (b) the reasoning behind the choice of current indicators, and (c) the impact of performance measurements on service delivery. Methods: (1) A study of documents (national and, if available, also local) on the motivation for, choice of, and implementation of quality measurements, and (2) interviews with top and middle managers in community services for people with intellectual disabilities or mental health difficulties. Results: A varied set of motivations have been identified, including the intention to introduce a more facts-based and transparent governance, the need for information that supports the management of scarce resources, and as a tool in the development of service quality for users. The motivation appears to be dependent on level of government, and the attitude among service unit managers tends to be ambivalent; they want performance measurements but cannot see how to measure the important aspects of service quality. The choice of actual indicators is subject to a process bias; that is, one measures what is easily available in administrative systems. The results concerning impact on services are less clear and also context dependent. We have identified usage in the search for cost-cutting possibilities, defense against critique, and that reporting runs the risk of reinforcing routinization of services. Discussion: The possible impact on services is discussed. Layers of ambiguity are outlined, as measurements can be tools both for quality development and in the defense of current services against "unrealistic demands" from the media or stakeholders. The measurements tend to be used more as sources of governance information than tools for quality development. Conclusion: The impact of quality measurement is rather ambiguous. On the one hand, it functions as a tool for budget control, whereas on the other hand, unit managers call for better measurement of user outcomes and expect that such measurement can balance the current preoccupation with input indicators, such as expenditures.

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.

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.

Marriage, Separation and Beyond: A Longitudinal Study of Families of Children with Intellectual and Developmental Disabilities in a Norwegian Context.

BACKGROUND: This study addresses family structure in families raising a child with disabilities in Norway. The aims are to add to the literature on termination of parental relationships and to explore family research topics that are rarely discussed in disability research, such as cohabitation versus marriage and repartnering. METHODS: Longitudinal survey data on families of children with intellectual and developmental disabilities who were born 1993-1995 were compared with register data on all families of same-aged children (five waves 1999-2012). RESULTS: Parents of children with disabilities had slightly lower termination rates and formalized their partnerships earlier. Furthermore, the rate of repartnering among divorced/separated mothers of young children with disabilities was similar to that of other mothers but decreases later in the child's life course. CONCLUSIONS: Results support the view that findings diverge and are most likely dependent on context.

Prevalence, Trends and Custody Among Children of Parents with Intellectual Disabilities in Norway.

BACKGROUND: This study addresses children of parents with intellectual disability in Norway. The aim was to examine: (i) the impact of definitions of intellectual disability on prevalence, (ii) whether numbers were increasing, (iii) the prevalence of motherhood and fatherhood and (iv) rates of lost custody. METHODS: Analyses of national registers (n = 30 834) and mapping in four municipalities (n = 85). RESULTS: 0.19% of all children had parents with recorded intellectual disability, increasing to 0.87% with wider inclusion criteria. The number of children born to parents with intellectual disability has been declining since the mid-1980s. The proportion of mothers with intellectual disability was twice that of fathers. Parental custody was revoked for 30-50% of children, with single mothers being at particular risk. Parents with intellectual disability accounted for 20-25% of all custody cases. CONCLUSIONS: The results show that prevalence depends on the definition of intellectual disability. The decreasing number of children and the need for development of specially adapted family supports are discussed.

Self-reported health and sickness benefits among parents of children with a disability.

This article investigates the possible consequences in self-reported health and receipt of sickness benefits when parenting a child with a disability This study uses data from the population health study, The Nord-Trøndelag Health Study (HUNT 2), and the historical event database, FD-Trygd, which contains Social Security and national insurance data for the Norwegian population. In the analysis, we compare 1587 parents of a child with a disability to other parents. Results indicate that parenting a disabled child impacts on self-reported health, particularly among mothers; however, being a parent to a disabled child has a much stronger effect in explaining the variance in received sickness benefits, and also length of time and frequency of having received sickness benefits. Parents with disabled children report just slightly lower self-reported health but are on sickness benefits more often than other parents which may be attributed to their extended care responsibilities.

Ageing and health status in adults with intellectual disabilities: results of the European POMONA II study.

BACKGROUND: POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). METHOD: The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. RESULTS: Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. CONCLUSIONS: Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.

Sampling and ethical issues in a multicenter study on health of people with intellectual disabilities.

OBJECTIVES: To study health inequalities in persons with intellectual disabilities, representative and unbiased samples are needed. Little is known about sample recruitment in this vulnerable group. This study aimed to determine differences in ethical procedures and sample recruitment in a multicenter research on health of persons with intellectual disabilities. Study questions regarded the practical sampling procedure, how ethical consent was obtained in each country, and which person gave informed consent for each study participant. STUDY DESIGN AND SETTING: Exploratory, as part of a multicenter study, in 14 European countries. After developing identical guidelines for all countries, partners collected data on health indicators by orally interviewing 1,269 persons with intellectual disabilities. Subsequently, semistructured interviews were carried out with partners and researchers. RESULTS: Identification of sufficient study participants proved feasible. Sampling frames differed from nationally estimated proportions of persons with intellectual disabilities living with families or in residential settings. Sometimes, people with intellectual disabilities were hard to trace. Consent procedures and legal representation varied broadly. Nonresponse data proved unavailable. CONCLUSION: To build representative unbiased samples of vulnerable groups with limited academic capacities, international consensus on respectful consent procedures and tailored patient information is necessary.

Family attitudes to deinstitutionalisation: changes during and after reform years in a Scandinavian country.

BACKGROUND: Research shows that many families initially oppose relocation from institutions to community care, but also that a majority change their mind after resettlement. The paper addresses the question of whether this post-resettlement preference for community services is only short-term or likely to last. METHOD; Data were gathered at three points in time on people resettling from institutions in Norway: before resettlement (1989/90), shortly after resettlement (1994/95), and about ten years after resettlement (2001). Participants in 1989/90 and 1994/95 were identical (N = 222, aged 18-67 in 1989). The 2001 sample was different (N = 176, aged 20-67). Data gathering consisted of interviews with staff and a postal questionnaire to families. RESULTS: In 1989/90, only 17% of families preferred community care, while in 1994/95 and 2001 respectively, 73% and 76% of families preferred community care. CONCLUSIONS: The preference for community care appears not to be short-term. The question of empowerment/choice associated with the pattern of change from before to after resettlement is briefly discussed.