Journal of Intellectual Disabilities, 25(2), 2021, pp.183-191.
Publisher:
Sage
Place of publication:
London
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
(Edited publisher 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.
(Edited publisher abstract)
Summary: 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
(Edited publisher abstract)
Summary: 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.
(Edited publisher abstract)
Subject terms:
short break care, learning disabilities, social work, home care, carers;
This summary report brings together the main findings from an evaluation of three Action for Children services in Cardiff, Glasgow and Edinburgh. These services provide specialist short breaks and intensive support services to families and learning disabled young people with severely challenging behaviours. The report provides a literature review and a detailed analysis of the model of service that has evolved at the three locations. An overview of staff employed by the services shows that most have some form of higher qualification and access to regular training. Families using the service tend to be from poor backgrounds, with many being lone parent families, and many living in rented accommodation and dependent on benefits. More boys than girls accessed the services. Most were teenagers and most attended special schools, with many also being diagnosed with autism. About a quarter were dependent on others for feeding, dressing and toileting. Key workers rated the changes in children and families over the preceding six months and reported that a sizeable proportion had shown some improvements in communication and personal care. Interviews with stakeholders involved with a sample of children revealed a very positive evaluation of the services. The children benefitted from participating in a range of activities, but their social inclusion remains limited. The report concludes with recommendations on the future developments of these services.
This summary report brings together the main findings from an evaluation of three Action for Children services in Cardiff, Glasgow and Edinburgh. These services provide specialist short breaks and intensive support services to families and learning disabled young people with severely challenging behaviours. The report provides a literature review and a detailed analysis of the model of service that has evolved at the three locations. An overview of staff employed by the services shows that most have some form of higher qualification and access to regular training. Families using the service tend to be from poor backgrounds, with many being lone parent families, and many living in rented accommodation and dependent on benefits. More boys than girls accessed the services. Most were teenagers and most attended special schools, with many also being diagnosed with autism. About a quarter were dependent on others for feeding, dressing and toileting. Key workers rated the changes in children and families over the preceding six months and reported that a sizeable proportion had shown some improvements in communication and personal care. Interviews with stakeholders involved with a sample of children revealed a very positive evaluation of the services. The children benefitted from participating in a range of activities, but their social inclusion remains limited. The report concludes with recommendations on the future developments of these services.
Subject terms:
learning disabilities, short break care, young people, carers, challenging behaviour, children, families;
Journal of Applied Research in Intellectual Disabilities, 23(1), January 2010, pp.85-94.
Publisher:
Wiley
Using data from a national database in Ireland of around 16,000 people with learning disabilities living with family carers, the availability of overnight respite provision was monitored over an 8-year period along with the recorded needs for such services. Despite marked rises in the number of people receiving respite breaks resulting from increased government funding, there were marked
Using data from a national database in Ireland of around 16,000 people with learning disabilities living with family carers, the availability of overnight respite provision was monitored over an 8-year period along with the recorded needs for such services. Despite marked rises in the number of people receiving respite breaks resulting from increased government funding, there were marked inequalities in the availability of provision across the country. In recent years the inequalities decreased but still remained. The proportion of families requiring breaks also rose and a similar pattern of inequalities were found here too. This study highlighted some of the complexities in reducing inequalities in the provision of respite services and in identifying the need for them. It would be advantageous to develop more explicit criteria regarding the need for respite provision and to record the family's preferences for the form this provision might take. These adjustments would add to the value of any national database as a service planning tool.
Subject terms:
learning disabilities, short break care, access to services, adults, carers, children, families;
Journal of Social Work, 6(1), April 2006, pp.65-79.
Publisher:
Sage
The evaluation of a project instigated by a voluntary group provided an opportunity to investigate the benefits of holiday breaks to both carers and participants. Feedback was obtained from over 100 people with intellectual disabilities through individual and group interviews, as well as from their carers using self-completed questionnaires. Overall, the breaks were thoroughly enjoyed by the project members, providing them with a range of activities and leisure pursuits in the company of their friends and, on certain breaks, with non-disabled people as well. Carers reported more benefits to their relative in the later years of the project and became more willing for their relative to attend. Three main issues are discussed: the use of mainstream settings and services, rather than specialist facilities, to provide short breaks; how best to encourage other carers of people with more significant needs to avail themselves of these opportunities; and ways of improving the social and leisure networks of people living with families so that the benefits of the ‘holiday’ experience could be recreated more locally and more frequently.
The evaluation of a project instigated by a voluntary group provided an opportunity to investigate the benefits of holiday breaks to both carers and participants. Feedback was obtained from over 100 people with intellectual disabilities through individual and group interviews, as well as from their carers using self-completed questionnaires. Overall, the breaks were thoroughly enjoyed by the project members, providing them with a range of activities and leisure pursuits in the company of their friends and, on certain breaks, with non-disabled people as well. Carers reported more benefits to their relative in the later years of the project and became more willing for their relative to attend. Three main issues are discussed: the use of mainstream settings and services, rather than specialist facilities, to provide short breaks; how best to encourage other carers of people with more significant needs to avail themselves of these opportunities; and ways of improving the social and leisure networks of people living with families so that the benefits of the ‘holiday’ experience could be recreated more locally and more frequently.
Subject terms:
holidays, learning disabilities, older people, short break care, adults, carers;
This report culminates from research undertaken into the feasibility of adult placement schemes in meeting the needs of older carers and their relatives with learning disabilities in Northern Ireland. This research was funded in part by a grant from the Foundation for People with Learning Disabilities, as part of the GOLD (Growing Older with Learning Disabilities) Programme.
This report culminates from research undertaken into the feasibility of adult placement schemes in meeting the needs of older carers and their relatives with learning disabilities in Northern Ireland. This research was funded in part by a grant from the Foundation for People with Learning Disabilities, as part of the GOLD (Growing Older with Learning Disabilities) Programme.
Journal of Learning Disabilities, 8(3), September 2004, pp.267-282.
Publisher:
Sage
Few family placement schemes involve adult persons, and rarely have they been targeted at older carers. Twenty-five carers, aged 55 years and over, of people with intellectual disabilities using one of two placement schemes in Northern Ireland were studied, along with a further 20 carers recommended for these schemes. Semi-structured individual interviews were used to obtain the views of carers, people with intellectual disabilities and placement providers. The placement schemes were very favourably received. Carers welcomed the break and valued the relationship with the placement provider. Individuals with disability reported greater opportunities to participate in activities. Placement providers were very satisfied with the way the schemes operated: the main complaint was the low level
Few family placement schemes involve adult persons, and rarely have they been targeted at older carers. Twenty-five carers, aged 55 years and over, of people with intellectual disabilities using one of two placement schemes in Northern Ireland were studied, along with a further 20 carers recommended for these schemes. Semi-structured individual interviews were used to obtain the views of carers, people with intellectual disabilities and placement providers. The placement schemes were very favourably received. Carers welcomed the break and valued the relationship with the placement provider. Individuals with disability reported greater opportunities to participate in activities. Placement providers were very satisfied with the way the schemes operated: the main complaint was the low level of payments. Key factors affecting the further development of services include recruitment of male providers, registration issues, training of providers and the difficulty in meeting the needs of multiply disabled persons.
Journal of Intellectual Disabilities, 16(1), March 2012, pp.29-43.
Publisher:
Sage
Place of publication:
London
Previous research has indicated that people with intellectual disabilities often have marked gaps in their knowledge around relationships and sexuality. However, their opportunity to participate in relationships and sexuality education (RSE) are often constrained by the attitudes and perceptions of family carers, frontline support workers, and professional staff. The aim of this study was to examine the attitudes in Northern Ireland of these 3 stakeholder groups to the provision of RSE for teenagers and adults with intellectual disabilities. A qualitative mixed methods research design was adopted involving: 2 focus groups with 26 family carers; individual interviews with 24 professionals including learning disability nurses and social workers; and 5 focus groups with 24 frontline staff.
Previous research has indicated that people with intellectual disabilities often have marked gaps in their knowledge around relationships and sexuality. However, their opportunity to participate in relationships and sexuality education (RSE) are often constrained by the attitudes and perceptions of family carers, frontline support workers, and professional staff. The aim of this study was to examine the attitudes in Northern Ireland of these 3 stakeholder groups to the provision of RSE for teenagers and adults with intellectual disabilities. A qualitative mixed methods research design was adopted involving: 2 focus groups with 26 family carers; individual interviews with 24 professionals including learning disability nurses and social workers; and 5 focus groups with 24 frontline staff. The findings demonstrate that there is agreement on the need for RSE. Four barriers were commonly reported: the need to protect vulnerable persons; the lack of training; the scarcity of educational resources; and cultural prohibitions. The impact of these barriers could be lessened through partnership working across these groups involving the provision of training and information about RSE, the development of risk management procedures and the empowerment of people with intellectual disabilities.
Subject terms:
learning disabilities, sex education, sexuality, social workers, attitudes, carers, care workers, health professionals;
Journal of Policy and Practice in Intellectual Disabilities, 3(2), June 2006, pp.87-94.
Publisher:
Wiley
... 1995 and records details of those living with family carers. In Northern Ireland, regional databases provide similar information. Using both sources, data were obtained on over 12,500 people living with family carers; half of whom lived with two parents, around 30% with a lone parent, and just under 20% with another relative. More people in Northern Ireland were identified as living with family carers, which was attributed mainly to less available residential alternatives. Only a minority of carers received respite breaks and domiciliary supports although higher proportions required them. The authors conclude that family care arrangements have received relatively little attention within government policy making, and hence service provision has been largely reactive. Future research should focus on the changing needs of carers over time and how they can be better supported in their role.
Many families provide lifelong support to their relative with an intellectual disability. However, relatively little information is available for national populations on the characteristics of the people for whom these families care and the supports they receive or need. A database of all persons in receipt of intellectual disability services has been operating in the Republic of Ireland since 1995 and records details of those living with family carers. In Northern Ireland, regional databases provide similar information. Using both sources, data were obtained on over 12,500 people living with family carers; half of whom lived with two parents, around 30% with a lone parent, and just under 20% with another relative. More people in Northern Ireland were identified as living with family carers, which was attributed mainly to less available residential alternatives. Only a minority of carers received respite breaks and domiciliary supports although higher proportions required them. The authors conclude that family care arrangements have received relatively little attention within government policy making, and hence service provision has been largely reactive. Future research should focus on the changing needs of carers over time and how they can be better supported in their role.
Subject terms:
learning disabilities, parents, relatives, unmet need, access to services, adults, carers, families;