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Supporting family carers of children and adults with intellectual disability
- Authors:
- KELLY Caraíosa, CRAIG Sarah, McCONKEY Roy
- Journal article citation:
- Journal of Social Work, 20(5), 2020, pp.639-656.
- Publisher:
- Sage
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)
Critical features of short break and community support services to families and disabled young people whose behaviour is severely challenging
- Authors:
- McCONKEY Roy, GENT Clare, SCOWCROFT Emma
- Journal article citation:
- Journal of Intellectual Disabilities, 15(4), December 2011, pp.252-268.
- Publisher:
- Sage
- Place of publication:
- London
Short break services are commonly provided as a support to families with learning disabilities and challenging behaviour, although many of these services have not been adapted to children with complex needs. The aim this article is to describe the essential features of a successful short break and community support service run in 3 UK cities by Action for Children for families with children who have developmental disabilities and severely challenging behaviours. In total, 123 families accessed the services in the period 2008-2010, with 63 children receiving residential short breaks only, 23 receiving community support only, and 37 receiving both forms of support. The model was documented and validated through several methods including individual and group interviews with around 30 different stakeholders. The services are embedded within multi-agency partnerships between Action for Children and a wider service network which includes learning disability teams and child and adolescent mental health service teams. Four particular features of the model are highlighted: the values and ethos underpinning the service; the service procedures; the organisation of short breaks; and the role of an intensive support/outreach service. The rationale for complex service models is discussed and the key lessons for replicating this model are reviewed.
Working out of the box: an evaluation of short breaks and intensive support services to families and disabled young people whose behaviour is severely challenging: summary report
- Author:
- McCONKEY Roy
- Publisher:
- Action for Children
- Publication year:
- 2011
- Pagination:
- 46p.
- Place of publication:
- London
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.
Inequalities in respite service provision: insights from a national, longitudinal study of people with intellectual disabilities
- Authors:
- McCONKEY Roy, et al
- Journal article citation:
- 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 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.
Holiday breaks for adults with intellectual disabilities living with older carers
- Authors:
- McCONKEY Roy, McCULLOUGH Joanne
- Journal article citation:
- 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.