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Family carers of people with intellectual disabilities in Ireland: Changes over 10 years
Abstract
Data were obtained on nearly 20,000 Irish children and adults living in various family care arrangements in 2007, 2012, and 2017. Over 10 years, the percentage increase in adult persons living with family carers was three times higher than the rise in the general population, with people aged 50 years and over having the highest proportional increase. Also a greater number of persons aged 40-49 group continued to live with both parents in 2017 (47%) compared to 2007 (33%). However, there was marked variation across the nine Community Health Organization areas in the proportions of adults living with family carers (from 49% to 62%). In the coming decades, increased provision will be required in both the quantum and type of supports provided to families so as to sustain their caring role but ensuring equity of provision nationally will be a major challenge.
... In most countries, families are the main caregivers and these arrangements often extend into their old age as they continue to look after ageing sons and daughters. With the increasing life expectancy of persons with intellectual disability, family care will become even more extended (Kelly et al., 2021). ...
... A higher proportion of one parent caring of children with intellectual disability would be suggestive of more parental separations. Also with older parents, a differential in lone parenting might be linked to increased morbidity and mortality which studies suggest can occur with informal care givers (Kelly et al., 2021;Legg et al., 2013). ...
... However, the gender of the lone carer is not recorded. A small proportion of persons (around 10%) live with a relative (such as a sibling), or with a substitute family (foster or adoptive family) but the database does not identify if these persons were lone carers (Kelly et al., 2021). Hence, there is a possibility of a small undercount of lone parenting. ...
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.
... Most of those who did not live in the family home resided in group homes with substantial numbers living in congregated settings in campus style or ward-like settings. Only around 14% were living independently with or without support (Kelly et al., 2019). ...
... The study findings also suggest that family support may no longer offer the safety net for ageing persons with intellectual disability as it did in the past. People with intellectual disability are outliving their parents with siblings now taking on the role of primary carers (Kelly et al., 2019). The family members in the present study considered themselves to be sufficiently involved with their relatives with intellectual disability and valued having their own lives back. ...
Previous studies suggest that family members of people with intellectual disabilities prefer them to move to supervised living arrangements such as group homes. In Ireland, personalised arrangements are emerging, but families have had little exposure to this option. In this qualitative study, we explored the perspectives of family members following their relative's move to personalised support options, mostly from group homes. Semi-structured interviews were conducted in 2011 with a family member of 17 people who had previously moved, with follow-up interviews held with 12 of them up to 18 months later. Thematic analysis on interview transcripts was conducted by three researchers. The family members spoke favourably of the new arrangements. A core theme of enabled independence emerged with subthemes of greater self-reliance in personal care, increased confidence, more social inclusion and gains for relatives. Reservations focussed on the need for more support hours, managing risk and loneliness.
... Table 1 summarises the characteristics of the people living with family carers in the two chosen cohorts. Of particular note is the increased number of persons living with family carers -a 20% rise from 2007 -which is higher than the growth in the general population over the same period of 8.6% (Kelly et al., 2019). However, as Table 1 summarises, the percentage change varied across the different characteristics of the cohorts with the greatest change occurring in the numbers of people aged 50 years and over (79% increase), those with moderate levels of disability (34% increase) and people resident in CHO Areas 9 (44% increase) and Area 8 (32% increase). ...
The extra strains experienced by families who care for a relative with intellectual disabilities are well documented. The provision of overnight (respite) breaks or supports in the home are common ways of supporting family carers. Often demand exceeds supply. Using data from a national register in Ireland, child and adults who received overnight breaks and in-home support were identified along with the characteristics that distinguished them from families that did not have these services. Moreover, changes in provision over a 10-year period were monitored and variations in provision across the country were ascertained.
Findings
Overnight breaks were the dominant form of family support in Ireland. However, they were available to fewer persons in 2017 compared to 2007, whereas the provision of home supports remained constant. Persons with severe and profound disabilities were those most likely to receive home supports or overnight breaks as were persons aged 30 years and over. There were persistent marked differences across the country in the provision of home supports, although the variation in the usage of overnight breaks had contracted somewhat in 2017.
Applications
Additional investment is needed to provide supports for families, given the increasing numbers of persons with intellectual disabilities living at home. A wider range of support options would provide greater choice and arguably improve the cost-effectiveness of current resources. Frontline professionals, such as social workers, need to be to the fore in persuading service commissioners of these needs based on empirical data as well as their personal experiences.
Background
People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting.
Method
This qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants.
Results
Three themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care.
Conclusions
The themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population.
Key messages n Health resource allocation decisions-how much money clinical commissioning groups and local authorities get from the Department of Health, and on what basis-will soon come under increasing scrutiny as NHS funding slows, reforms are implemented, and local services are held more accountable. n While the principles behind and methods of resource allocation in England have changed little since the mid-1970s, the NHS has changed considerably. This paper argues that the resource allocation system needs to change too, not only to reflect the challenges facing the NHS today but to ensure that it is fit for purpose for the future. n We review how health resource allocation in England and the formula on which it is based have changed over time, with a detailed critique of how decisions are currently made and how the process will change from April. We also explore how politics has influenced resource allocation through the pace of change policy, as well as some of its unintended impacts.
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.
Individuals with intellectual and developmental disabilities (IDD) experience high rates of social and health disadvantage. Planning effective services that meet the needs of this vulnerable population requires good population-based data that are collected on a routine, ongoing basis. However, in most jurisdictions, none of the commonly available data (e.g., health or disability benefits administrative data) completely captures the IDD population. To more accurately identify persons with IDD in a population, one solution is to link data across multiple sources. To do this, the authors report on an effort to create a linked database to identify a cohort of adults, aged 18–64, with IDD in Ontario and use these data to examine how the linkage can help study health and healthcare access. The linked dataset was created using four health and one disability income support databases. Standardized differences were used to compare sociodemographic and clinical characteristics of the IDD cohorts identified through the health, disability income support, and linked datasets. Indirect estimation was used to evaluate which IDD subgroups might be over- or underestimated if only a single source of data was available. The linked database identified a cohort of 66,484 adults with IDD (0.78% prevalence). The health and disability income support data each uniquely identified approximately a third of the cohort. Health data were more likely to identify younger adults (18–24 years), those with psychiatric illnesses, and hospitalized individuals. The disability income support data were more likely to identify adults aged 35–54 and those living in lower income neighborhoods. By linking multiple databases, the authors were able to identify a much larger cohort of individuals with IDD than if they had used a single data source. It also enabled the creation of a more accurate sociodemographic and clinical profile of this population as each source captured different segments of it.
Abstract Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.
Background:
Planning for the future care of adults with an intellectual disability after the main family carer ceases their care, continues to be a sensitive and difficult time posing challenges for service providers internationally. Limited research has been undertaken on this topic because until recently, people with intellectual disability usually pre-deceased their parents. This study examined ageing carers' preferences for future care and the support systems required to make such future plans.
Methods:
The study was conducted in one region of the United Kingdom with a high proportion of family carers. A mixed methods design was employed. In Stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers; aged 60-94 years. In Stage 2, 19 in-depth semistructured interviews were undertaken with a sample of carers to explore a range of issues around future planning.
Findings:
Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. A third of these carers reported that their caregiving resulted in high levels of anxiety. The main preference of the carers was for the person to remain in the family home, with either the family and/or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. The majority of carers did not want their relative to move into an older people's residential/nursing facility. In the qualitative data, four main themes were identified around future planning: unremitting apprehension, the extent of planning, obstacles encountered and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future.
Conclusion:
Findings of this study clearly identify the emotional, informational and practical supports required by these ageing family carers. These findings have national and international relevance in influencing how governments and service providers support parent and sibling carers to proactively plan for the future, and in the development of both in-home and out-of-home options when a family carer can no longer provide care. This is more urgent than ever given the growing numbers of older persons with intellectual disabilities in future decades.
Increasingly greater numbers of older parents are providing care at home for their sons and daughters with intellectual disabilities. As attention needs to be paid to the supports needed by such families to assist them with their caregiving activities, it is prudent to identify the types of supports that will be needed when the parents are no longer able to provide care. Working with a cohort of older parent carers in Prince Edward Island, Canada, the authors undertook to examine older carer concerns and planning issues. Using both qualitative and quantitative methods to explore the key issues that older parents of sons and daughters with intellectual disabilities are currently facing and their preferences for care in the future, the authors initiated a population-case-finding process, undertook pilot interviews with a sample, and then used the resultant qualitative data to form the quantitative component of the study. Of 132 identified families in the province, 10 parents voluntarily participated in pilot interviews, and 33 parents agreed to complete in-depth interviews. Analysis of qualitative data resulted in the following five themes: (1) worry about the future care of son or daughter; (2) concern about services funding; (3) having housing and care options; (4) lack of provider understanding of carer's needs; and (5) helping son or daughter become a productive and active member of society. Key issues identified through quantitative analysis included interactions with the government, the need for respite care, and meeting social and emotional needs. Preferred types of housing and care options included “small option homes” and services that provide care to both older parents and their sons and daughters. The authors' results emphasize the necessity of adequate supports being made available to older parents who wish to support their sons and daughters with intellectual disabilities at home and to ensure that desired supports are available in the future when they are no longer able to provide care.
The aim of this article is to review recent studies on the care burden of families with a member having intellectual and developmental disorder.
The family is the core unit for providing care to people with intellectual and developmental disorder, regardless of where they live. Recent research on this issue has been focused on two areas: the lifelong burden itself and its impact on the family. The research has incorporated a range of different approaches and has yielded diverse findings.
The longevity of people with intellectual and developmental disorder has made caring for older adults with intellectual developmental disorder developing dementia a new challenge. In addition, worldwide deinstitutionalization has made it possible for people with intellectual and developmental disorder to live within their communities and integrate with the general population. Because disabled individuals may become parents themselves, the requirements of family care for children born to persons with intellectual and developmental disorder may be different from previous generations of parents who raised children with IDD.
The purpose of this article was to collate evidence to describe where people with mental retardation or developmental disabilities live in five developed countries: United States, Canada, England, Wales, and Australia. Family homes are important dwelling places for people with mental retardation. They are the home of the great majority of children with mental retardation and a considerable proportion of adults with mental retardation. The likelihood of placement outside the family home increases with adulthood and progressively as people age. Adults with mental retardation live in a wide variety of settings, with formal residential provision frequently dependent on the arrangements that the authorities responsible for providing service support have chosen to make. There has been a considerable move away from accommodating people in large segregated and geographically isolated institutions in the countries considered. However, the current range of accommodation includes much with a distinctively different character to the homes where other citizens live. Many people still live in larger groups than would be ordinarily found in typical homes and this may necessitate departure from the architectural norm. In all of the countries considered, there has been a recent trend towards small community settings, compatible with typical housing architecture. This appears furthest advanced in the U.S. but is discernible elsewhere. Availability of residential services at a national level varies between 100 and 155 places per 100,000 total population. Regional variation within countries is even greater. In no case is the national availability considered adequate to meet the demand arising from changing need or expectations. MRDD Research Reviews 7:115–121, 2001. © 2001 Wiley‐Liss, Inc.
With improved general health status many adults with intellectual disabilities (ID) are living to old age, much like other adults. The World Health Organization has recognized the needs of this older population and identified the challenges they pose for governmental ministries and non-governmental organizations charged with planning, advocacy, financing, and delivery of specialty lifecare services and rehabilitation programs. These challenges include a range of issues normally confronting older adults, such as pensioning and financial security, changes in lifestyles associated with retirement and adaptations to living arrangements and housing, modifications in daily activities and community inclusion, changing physical and sensory abilities, and greater demands for support for aging families and other carers. As older adults with ID may also be affected by latelife or age-related conditions and begin to experience secondary impairments, these challenges may be more pronounced when encountered by NGOs located in countries with developing market economies. In these instances, the onus on promoting healthy aging will fall upon national entities which are responsible for targeting people with disabilities from infancy and childhood, and providing lifelong supports for adolescents, adults, and families. Ideally, if such efforts are undertaken early, they will lead to actions that can be undertaken to promote better health as people with ID age and ensure that the latter part of their lives are experienced as ‘quality of life years.’
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.
Background:
Carers of children with intellectual disability show high rates of parent-related stress and are at an increased risk for deleterious physical and mental health.
Materials and methods:
This study investigated the relationship between demographic and social characteristics and parenting stress, within two different cross-sectional samples of carers: those who care for an adolescent with an intellectual disability and carers from a population based sample. Participants were 1152 carers from the Household Income and Labour Dynamic in Australia study and 284 carers of adolescents with intellectual disabilities from the Ask study.
Results and conclusions:
The results supported previous research suggesting carers of children with intellectual disabilities experience high parent-related stress. The results also support the buffer model of social support, as high social support was related to lower parent-related stress. Self-rated prosperity, financial pressure and relationship status were also related to lower levels of parent-related stress.
This scoping review addressed the following questions: (a) What types of caregiver interventions are being done in both aging and developmental disability research? (b) How are these interventions similar and different? (c) What kinds of outcomes do these interventions have? (d) What innovative approaches are these interventions using? and (e) What can each field (developmental disabilities and gerontology) learn from the other based on this review? The disability review spanned 20 years (1992-2012), resulting in 14 studies; the aging review spanned 5 years (2008-2012), resulting in 55 studies. Data from the final selected studies were then extracted and compared on research design, type of intervention (governmental programs, small-group psychosocial, and other), and outcomes. Generally, in both fields, family-support interventions benefited participants' well-being and improved service access and satisfaction. Increased partnership between the fields of aging and developmental disabilities is critical to future scholarship in caregiving for both populations.
Purpose
The aim of this paper is to report on the age‐specific administrative prevalence of learning disabilities in England.
Design/methodology/approach
The paper's approach is secondary analysis of data from national education, health and social care agencies.
Findings
There is an abrupt decline in the age‐specific administrative prevalence of learning disabilities at the point of transition to adult services.
Research limitations/implications
The results highlight the existence of a “hidden majority” of adults with learning disabilities.
Originality/value
The data in this paper have implications for commissioning better health services for people with learning disabilities. First, health information systems should incorporate better ways of identifying patients with mild and moderate learning disabilities. Second, consideration should be given to the extension of annual health checks to include all young people who have had a Statement of Special Educational Needs.
Purpose
– The purpose of this paper is to describe trends in the age-standardised mortality rate and life expectancy of people with learning disabilities in Sheffield over three decades and to compare these with trends in the general population of England and Wales.
Design/methodology/approach
– Data were extracted from the Sheffield Case Register and compared with data published by the Office for National Statistics for England and Wales.
Findings
– There was a sustained reduction in age-standardised mortality rates and a sustained increase in life expectancy for people with intellectual disabilities over the 33-year period. These changes are extremely similar to those observed in the general population of England and Wales.
Originality/value
– There is little evidence of any closing of the gap in age-standardised mortality rates or life expectancy between people with intellectual disabilities and the general population.
This paper reviews evaluation studies of family placement schemes offering long-term care for adults with learning disabilities in Britain. The model is widely used, but there is very little research describing such schemes. It is suggested that evaluation is made difficult because the goals of placement schemes for people with learning disabilities are not made clear in the literature. A theoretical structure for evaluation based upon an ecological view of quality of life is suggested and research is reviewed within this model. Where possible, comparisons are made to American literature on similar models of care.
Background:
In keeping with worldwide demographic changes and an ageing population, people with intellectual disabilities are living longer and all the evidence suggest that this trend will continue. This 'new' population of older people and their carers will pose challenges for health and social care providers.
Aim:
This paper presents a review of the literature on key issues influencing caregiving for older people with intellectual disabilities and their ageing family carers.
Methods:
The review was undertaken using a framework adapted from the NHS Centre for Reviews and Dissemination. Papers were identified through the use of databases including CINAHL, Science Direct, PsychoInfo, Blackwell Synergy, the Cochrane Library and MEDLINE.
Findings:
The key themes which emerged from the literature and which consequently form the basis of this review include: ageing family carers, future planning and support services. In the context of family caregiving, older people with intellectual disabilities represent a unique group insofar as they are unlikely to be married and therefore have no spouse or dependents to care for them in later life. As a result, parents (usually mothers) have to continue caring for their son or daughter with an intellectual disability as they both grow older, often resulting in a mutually dependent relationship. The caregiving situation is further complicated by poor emergency and future planning and by a lack of appropriate services for this group of individuals.
Conclusions:
In light of the emergence of a 'new' population of older people with intellectual disabilities, there is an urgent need to develop services and support structures which will enable these individuals and their ageing carers to 'age in place' and when this is no longer possible, to have appropriate alternatives that recognise the duality of their needs as older people and as people with intellectual disabilities.
Implications for practice:
Opportunities for supervision could be one way to increase individuals' awareness of their own role in the team.
Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.
This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis.
Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support.
Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions.
The European region has seen remarkable heath gains in those populations that have experienced progressive improvements in the conditions in which people are born, grow, live, and work. However, inequities, both between and within countries, persist. The review reported here, of inequities in health between and within countries across the 53 Member States of the WHO European region, was commissioned to support the development of the new health policy framework for Europe: Health 2020. Much more is understood now about the extent, and social causes, of these inequities, particularly since the publication in 2008 of the report of the Commission on Social Determinants of Health. The European review builds on the global evidence and recommends policies to ensure that progress can be made in reducing health inequities and the health divide across all countries, including those with low incomes. Action is needed--on the social determinants of health, across the life course, and in wider social and economic spheres--to achieve greater health equity and protect future generations.
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.
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.
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