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A case‐study of policy change in residential service provision for adult persons with intellectual disability in Ireland
Health & Social Care in the Community
Abstract
In Europe, many people with intellectual disabilities continue to live in congregated settings. In 2012, Ireland formally introduced a resettlement policy with people moving to live in more personalised arrangements. This longitudinal country case‐study aimed to monitor the implementation of this policy and the intra‐country variations that arose using the records maintained in the National Intellectual Disability Database. Details of over 4,000 people living in congregated settings were examined in 2007 and again in 2012 and 2017. In addition, people who moved from such settings from 2007 onwards were tracked and the number of new admissions to them was estimated over the 10‐year period. Overall there was nearly a 30% drop in the numbers of people in congregated settings but the reductions varied markedly across the country and by 2017 the disparity was greater than in 2007. Also by 2017 persons aged over 55 years were eight times more likely to be accommodated in congregated settings. The case‐study illustrates the value of a longitudinal dataset for monitoring policy implementation across a diversity of provider organisations and administrative areas.
... 17 Thus, policies of "resettlement" from hospitals to communities were introduced to supposedly allow those with mental illnesses more personalized care as part of the community, rather than be removed from it. 18 The shift to community care extended beyond Europe and the US, with different countries following suit, including India, 19 South Africa, 20 Brazil, 21 Uzbekistan, 22 and the Israelioccupied Palestinian territories (the West Bank and Gaza)-albeit with varying degrees of success. ...
... The trend appears to be upward and the lower rates of lone parenting of people with intellectual disabilities reported here may not persist as cultural change continues in Irish society (Brennan et al., 2018). But even if the present rates were to stabilize as has happened in the general population over the past 10 years, it will mean that an increasing proportion of children and adults with an intellectual disability will live with lone parents for some time to come, especially with the policy changes with respect to residential care (Kelly et al., 2019). This emerging reality will need to be addressed by family support services in a way that previous generations were not required to do so. ...
People with intellectual disability mostly require life-long care that in many countries is provided by parents. The increased risk of marital breakdown in these families has been a focus of attention but the research evidence is contradictory. This study overcomes the methodological shortcomings of past research by using national samples of lone parent carers and making comparisons with lone parenting in the general population based on four national censuses conducted from 2002 to 2016. Just more than one quarter of family carers of persons with intellectual disability in Ireland are lone parents, and the number has risen by nearly 50% in the past 15 years. Compared with the general population, a somewhat higher incidence is more apparent for lone carers of teenagers and young adults with intellectual disability, whereas its incidence is lower with children aged 0–9 years in each of the four census years and also for dependents aged older than 30 years. Only one in four lone carers were reported to receive respite breaks. The findings cautiously suggest that a breakdown in marital or cohabiting arrangements in Ireland is no more common among parents who have a child with an intellectual disability and may occur less often.
The paper is intended to show a system of institutional care for people with intellectual disabilities, which is characterized by a kind of ambivalence. The whole disquisition is based on two fundamental and dichotomous categories: control and subordination versus autonomy and independence. Each of these categories is connected with one of two perspectives within which a residential care facility can be captured. The first one arises from Goffman’s vision of a total institution, where a unit is presented as an objectified subject of other people’s actions, revealing a situation of isolation and personal dependence. The second perspective presents a model of relationships between the personnel and their charges; it is characterized by an individualistic approach toward the needs of people with disabilities regarding their right to autonomy and self-determination. The confrontation between these two perspectives and areas of issues is discussed in this paper.
Kolektivní monografie zpracovává aspekty přístupnosti v kontextu osob se zdravotním postižením či specifickými potřebami. Přístupný prostor není jen fyzický prostor, který je řešitelný úpravou po technické stránce. Přístupné prostředí je takové prostředí, kterési může užít každý člověk bez rozdílu. Být přístupný znamená být vybavený dostatečnými kompetencemi – jak komunikovat s jedinci se zdravotním postižením, jak reagovat, jak poskytovat osobní asistenci, průvodcovské služby, tlumočení apod. Informovanost co nejvyššího počtu lidí o dané problematice zajišťuje vyšší připravenost a možnost porozumění a přijetí jedinců se zdravotním postižením ve společnosti. Součástí publikace je interaktivní edukační materiál pro žáky 1. a 2. stupně ZŠ a jejich pedagogy (s možností stažení přes QR kód),který má potenciál k tomu, aby rigidní postoje a stereotypizované předsudky vůči osobám se zdravotním postižením byly postupně vymýceny.
Background:
Ireland has a growing population of adult persons living with family carers, thereby increasing the demand for residential places. Simultaneously, government policy aimed to reprovision residents living in congregated settings but at a time when funding was curtailed due to the economic crisis. This study examines the movements of people into and among three types of residential options between 2009 and 2014.
Method:
A cohort of 20,163 persons recorded on the National Intellectual Disability Database in 2009 was identified and tracked to the 2014 database.
Results:
An estimated 200 persons per annum (@1.6% of those living with families) moved from family care although the number of places available nationally fell by 9%. Moreover, transfers of existing residents into vacated places tended to exceed those from families.
Conclusions:
More people will have to continue living with their families and for longer if funding for new places remains curtailed.
In 2008, the Republic of Ireland descended into the deepest period of economic recession since the Great Depression of 70 years before. In the aftershock of recession, research suggests that it has been the nation’s children who have been hit hardest. Within this, intellectually disabled children are considered a particularly vulnerable socio-economic group. Nonetheless, the impact and experience of the recession for intellectually disabled children has received little specific attention within policy and literature, and as a consequence remains poorly understood. This article aims to expand upon discussions by drawing out a number of key themes through a review of the relevant literature. Lessons learned from the review are then used to inform a discussion around policy implications. It is suggested that better pathways to justice and an improved presence of the voices of intellectually disabled children, and their families, at a macro-political level are required moving forward.
This study examined service use and expenditures for people with intellectual and developmental disabilities (IDD) living at home and in the community in California in 2005 and 2013. The number of people assessed for IDD services increased, along with the percentage of individuals who did not receive any services between 2005 and 2013. Controlling for client needs, children age 3-21 were less likely than other age groups to receive any services using logistic regressions. All racial and ethnic minority groups were less likely to receive any services than were white populations. Females, younger people, and all racial and ethnic minority groups who received services had significantly lower expenditures, with wide geographic variations. The disparities by age, gender, race/ethnicity, and geography have persisted over time in California.
To describe the promise and potential of big data analytics in healthcare.
The paper describes the nascent field of big data analytics in healthcare, discusses the benefits, outlines an architectural framework and methodology, describes examples reported in the literature, briefly discusses the challenges, and offers conclusions.
The paper provides a broad overview of big data analytics for healthcare researchers and practitioners.
Big data analytics in healthcare is evolving into a promising field for providing insight from very large data sets and improving outcomes while reducing costs. Its potential is great; however there remain challenges to overcome.
Objectives:
The demand for places in supported accommodation is likely to rise due to the increasing longevity of people with intellectual disabilities and as their parents become unavailable or unable to care for them. However few attempts have been made to ascertain carer's views on alternative accommodation.
Method:
Four studies were undertaken in Northern Ireland to ascertain carer's views using three different methods. In all, 387 carers participated with the response being greatest for individual interviews conducted in the family home and least for self-completed questionnaires and attendance at group meetings.
Results:
The majority of carers envisaged the person continuing to be cared for within the family. The most commonly chosen out-of-home provision was in residential or nursing homes, living with support in a house of their own and in homes for small groups of people. Few carers chose living with another family. However only small numbers of carers envisaged alternative provision being needed in the next two years and few had made any plans for alternative living arrangements.
Conclusions:
The implications for service planning are noted, primarily the need for individual reviews of future needs through person-centred planning; improved information to carers about various residential options and their differential benefits, along with more services aimed at improving the quality of life of people living with family carers. These need to be underpinned by a commitment of statutory agencies to partnership working with family carers. The implications for mental health services are noted.
Purpose:
This article provides a conceptual framework for understanding healthcare disparities experienced by individuals with disabilities. While health disparities are the result of factors deeply rooted in culture, life style, socioeconomic status, and accessibility of resources, healthcare disparities are a subset of health disparities that reflect differences in access to and quality of healthcare and can be viewed as the inability of the healthcare system to adequately address the needs of specific population groups.
Methods:
This article uses a narrative method to identify and critique the main conceptual frameworks that have been used in analyzing disparities in healthcare access and quality, and evaluating those frameworks in the context of healthcare for individuals with disabilities. Specific models that are examined include the Aday and Anderson Model, the Grossman Utility Model, the Institute of Medicine (IOM)'s models of Access to Healthcare Services and Healthcare Disparities, and the Cultural Competency model.
Results:
While existing frameworks advance understandings of disparities in healthcare access and quality, they fall short when applied to individuals with disabilities. Specific deficits include a lack of attention to cultural and contextual factors (Aday and Andersen framework), unrealistic assumptions regarding equal access to resources (Grossman's utility model), lack of recognition or inclusion of concepts of structural accessibility (IOM model of Healthcare Disparities) and exclusive emphasis on supply side of the healthcare equation to improve healthcare disparities (Cultural Competency model). In response to identified gaps in the literature and short-comings of current conceptualizations, an integrated model of disability and healthcare disparities is put forth.
Conclusion:
We analyzed models of access to care and disparities in healthcare to be able to have an integrated and cohesive conceptual framework that could potentially address issues related to access to healthcare among individuals with disabilities. The Model of Healthcare Disparities and Disability (MHDD) provides a framework for conceptualizing how healthcare disparities impact disability and specifically, how a mismatch between personal and environmental factors may result in reduced healthcare access and quality, which in turn may lead to reduced functioning, activity and participation among individuals with impairments and chronic health conditions. Researchers, health providers, policy makers and community advocate groups who are engaged in devising interventions aimed at reducing healthcare disparities would benefit from the discussions. Implications for Rehabilitation Evaluates the main models of healthcare disparity and disability to create an integrated framework. Provides a comprehensive conceptual model of healthcare disparity that specifically targets issues related to individuals with disabilities. Conceptualizes how personal and environmental factors interact to produce disparities in access to healthcare and healthcare quality. Recognizes and targets modifiable factors to reduce disparities between and within individuals with disabilities.
The authors discuss recent developments in services for people with intellectual disabilities (ID) in the Nordic countries. They note that all of the countries saw important reforms during the 1990s, regarding both deinstitutionalization and decentralization. However, they posit that the litmus test of the reforms is not what happens during reform years, but after the reform energy decreases and political attention fades. Thus, developments after 2000 are of particular interest. The comparative analysis is based on research reviews in the five Nordic countries. The analysis observed a trend toward larger group homes and congregations, inequality across municipalities, marketization, and new public management, but also an increasing emphasis on consumer rights and the use of the personal assistance scheme in services for people with ID. The authors conclude that diverging trends coexist, with improvements going together with significant setbacks. They explore the trends from a political science perspective and, in particular, note how they relate to recent shifts in public management and changing drivers of change.
There is increasing recognition that the development of evidence-informed health policy is not only a technical problem of knowledge exchange or translation, but also a political challenge. Yet, while political scientists have long considered the nature of political systems, the role of institutional structures, and the political contestation of policy issues as central to understanding policy decisions, these issues remain largely unexplored by scholars of evidence-informed policy making.
We conducted a systematic review of empirical studies that examined the influence of key features of political systems and institutional mechanisms on evidence use, and contextual factors that may contribute to the politicisation of health evidence. Eligible studies were identified through searches of seven health and social sciences databases, websites of relevant organisations, the British Library database, and manual searches of academic journals. Relevant findings were extracted using a uniform data extraction tool and synthesised by narrative review.
56 studies were selected for inclusion. Relevant political and institutional aspects affecting the use of health evidence included the level of state centralisation and democratisation, the influence of external donors and organisations, the organisation and function of bureaucracies, and the framing of evidence in relation to social norms and values. However, our understanding of such influences remains piecemeal given the limited number of empirical analyses on this subject, the paucity of comparative works, and the limited consideration of political and institutional theory in these studies.
This review highlights the need for a more explicit engagement with the political and institutional factors affecting the use of health evidence in decision-making. A more nuanced understanding of evidence use in health policy making requires both additional empirical studies of evidence use, and an engagement with theories and approaches beyond the current remit of public health or knowledge utilisation studies.
Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability.
The characteristics of five existing European intellectual disability databases from four countries (Iceland, Latvia, Ireland, and two in France), were discussed on the basis of ideal criteria set by a working group on childhood intellectual disability as part of the Surveillance of Cerebral Palsy in Europe Network (SCPE-NET). Mean prevalence values for severe intellectual disability for the birth years 1990 till 2002 were compared across databases.
Methods of case recruitment and diagnosis differed across databases, but classification of intellectual disability and completeness were similar. Severe intellectual disability (IQ<50) prevalence estimates were significantly (p<0.001) different across databases (south-east France: 3.3 out of 1000; south-west France: 3.0 out of 1000; Latvia: 3.9 out of 1000; Ireland: 5.0 out of 1000; and Iceland 5.1 out of 1000).
In spite of differences in diagnosis and case inclusion across databases, the construction of a common database for severe intellectual disability was deemed feasible through harmonization of certain criteria, such as age, and through restriction to those with severe intellectual disability.
As understanding of health deficits among people with intellectual and developmental disabilities (IDD) increases, concerns grow about how to develop comprehensive, sustainable surveillance systems to reliably monitor the health of this population over time. This study reviews literature from 12 countries in which retrospective administrative data have been used to estimate population-based prevalence of IDD, identifies promising practices in that literature, and discusses the feasibility of applying those promising practices to other countries. Administrative data sources can be used to identify the number of people with IDD (numerators) in the presence of population estimates from which people with IDD are drawn (denominators) for discrete geographic locations. Case ascertainment methods, age groupings, data years captured, and other methods vary, contributing to a wide variation in prevalence rates. Six methods are identified from five countries that appear to offer the greatest likelihood of expanded applications. Approaches in which administrative data collections are linked with other population-based data sources appear promising as a means of estimating the size and characteristics of populations living with IDD in defined geographic locations. They offer the potential for sustainability, timeliness, accuracy, and efficiency.
Purpose
To document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland.
Design/methodology/approach
Ireland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 through to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups.
Findings
From 2011 onwards, cuts in Government funding coincided with a continuing reduction in the overall provision of residential accommodation for adults with ID. There was a parallel increase in the number of people living with family carers, especially persons aged 55 years and over. The greatest reduction was in residential centres which was in line with recent policy but this was not matched by an increase in alternative options, with fewer people aged 20-34 living in residential accommodation of any kind. Compared to Great Britain, Ireland has proportionately more residential places with fewer people living independently.
Originality/value
This national dataset is a valuable tool for monitoring changes in service provision over time and for determining the impact of government policy and funding decisions.
The requirements for a rigorous cost-effectiveness analysis are considered. The evidence base on services for people with ID is then reviewed with an emphasis on the transition from institutional services to those in the community and postdeinstitutionalization research on the costs and outcomes of different forms of community provision. Despite certain limitations, a number of conclusions are possible: (a) overall, community services provide for a better quality of life than institutional care; (b) whether community service costs are more or less than institutional costs may depend on factors such as funding mechanisms, wage rates and the level of investment in institutional services prior to deinstitutionalization, that are likely to differ between countries; (c) economies of scale are not pervasive but may arise among settings with very small group sizes depending on staffing model; (d) the costs of staffing are a major element in total service package costs and there is scope to relate staff input more precisely to the needs and characteristics of service users; (e) the factors responsible for variation in costs and outcomes are incompletely understood; (f) however, resource input does not appear to result in enhanced outcome; (g) greater staff input is inefficiently translated into performance which affects service users; and therefore, (h) operational culture and staff training and management are important determinants of ultimate outcome. More research is required on the factors that drive costs on the one hand and outcomes on the other. An international consensus is required on the important variables to be described when doing research on residential support arrangements, so that relationships between environmental characteristics and either costs or outcome can be identified with greater confidence.
In many countries, public responsibility over the funding and provision of long-term care services is held at the local level. In such systems, long-term care provision is often characterised by significant local variability. Using a panel dataset of local authorities over the period 2002-2012, the paper investigates the underlying causes of variation in gross social care expenditure for older people in England. The analysis distinguishes between factors outside the direct control of policy makers, local preferences and local policy spillovers. The results indicate that local demand and supply factors, and to a much lesser extent local political preferences and spatial policy spillovers, explain a large majority of the observed variation in expenditure. Copyright © 2015 John Wiley & Sons, Ltd.
Copyright © 2015 John Wiley & Sons, Ltd.
Background:
Small-scale community accommodation is the preferred alternative internationally to the institutional and congregated services that previously dominated residential care for persons with intellectual disability. The strategies required for changing to new service models are not well researched.
Method:
The National Intellectual Disability Database in Ireland provided the data to explore the changes in provision that occurred over a 10-year period and the extent of the intra-country variation across eight administrative areas for health services. Data were extracted for 2 years, 1999 and 2009, for over 7000 adult persons resident in either congregated or community-based accommodation. Comparative indicators were calculated for the eight areas as well as nationally. In addition, over 4000 persons living in congregated settings were tracked over the 10 years to ascertain relocations as well as gathering information on the numbers of people newly admitted to each type of accommodation.
Results:
Marked variations across the eight areas were found in the overall numbers of people in residential accommodation, the proportion of persons living in congregated settings and the extent of changes in the numbers of people in each type of accommodation. Moreover, fewer than 15% of people had relocated nationally from congregated settings over the 10-year period and the number of new admissions to this form of provision remained high in certain areas.
Conclusions:
The implementation of new forms of provision was not uniform across Ireland and possible reasons are proposed. Among the wider lessons internationally is the need for robust systems to monitor service provision nationally and locally if equity of access is to be achieved.
Intellectual disability is an extremely stigmatizing condition and involves utilization of large public health resources, but most data about its burden is based on studies conducted in developed countries. The aim of this meta-analysis was to collate data from published literature and estimate the prevalence of intellectual disability across all such studies. The review includes studies published between 1980 and 2009, and includes data from populations that provided an overall estimate of the prevalence of intellectual disability. Meta-analysis was done using random effects to account for heterogeneity. Sub-group analyses were also done. The prevalence of intellectual disability across all 52 studies included in the meta-analysis was 10.37/1000 population. The estimates varied according to income group of the country of origin, the age-group of the study population, and study design. The highest rates were seen in countries from low- and middle income countries. Studies based on identification of cases by using psychological assessments or scales showed higher prevalence compared to those using standard diagnostic systems and disability instruments. Prevalence was higher among studies based on children/adolescents, compared to those on adults. Higher prevalence in low and middle income group countries is of concern given the limitations in available resources in such countries to manage intellectual disability. The importance of using standardized diagnostic systems to correctly estimate the burden is underlined. The public health and research implications of this meta-analysis have been discussed.
This study describes a national data audit of the National Intellectual Disability Database (NIDD). The NIDD is a national information system for intellectual disability (ID) for Ireland. The purpose of this audit was to assess the overall accuracy of information contained on the NIDD, as well as collecting qualitative information to support the improvement in the quality of data contained on the NIDD. A nationally representative sample was generated from the NIDD. Twenty-five auditors were recruited from senior staff within statutory and voluntary intellectual disability services and trained by the authors. They carried out 250 clinical interviews with individuals with ID, their families and/or paid carers, using structured questionnaires. The data collected were analysed using frequency analyses and compared with the existing NIDD data set to assess accuracy. Qualitative information was also collected. Overall, the results from the audit indicate that almost three quarters (72.2%) of all the data recorded on the NIDD are accurate, with 19.3% inaccurate, and 8.5% of the sought audit data not returned. The audit found that the NIDD significantly overestimated the need for enhanced residential care services. The study highlights the need for clinician and service user involvement in specialist service data collection, in order to both conduct valid research and to best plan for ID service development.
Large-scale reviews of research in deinstitutionalization and community living were last conducted about 10 years ago. Here we surveyed research from 1997 to 2007. Articles were included if the researchers based the study on original research, provided information on the participants and methodology, compared residential arrangements for adults with intellectual disability, and were published in English-language peer-reviewed journals. Sixty-eight articles were found. In 7 of 10 domains, the majority of studies show that community-based services are superior to congregate arrangements. These studies provide more evidence of the benefits of deinstitutionalization and community living and continue to indicate variability in results, suggesting that factors other than the basic model of care are important in determining outcomes.
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