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Families’ views on their relatives with intellectual disability moving from a long-stay psychiatric institution to a community-based intellectual disability service: an Irish context
- Author:
- DOODY Owen
- Journal article citation:
- British Journal of Learning Disabilities, 40(1), March 2012, pp.46-54.
- Publisher:
- Wiley
In Ireland in recent years there has been a shift regarding the care of people with intellectual disability from a psychiatric hospital to residential homes within both community- and campus-based accommodation. This study aimed to explore families’ views regarding the movement of people with intellectual disability from a long-stay psychiatric institution to campus-based accommodation within a local intellectual disability service. The client group involved in the transfer consisted of 36 individuals who moved to 6 campus-based bungalows. Interviews were conducted with 11 family members and the data transcribed. Two key themes were identified: the positive transition resulting from the move; and the enlightened thinking that has developed as a consequence of the move. Overall the families expressed positive thoughts about the move to community houses, believing that life was better for their family members in the community compared to the institution. The study indicates the importance of care and care delivery from the family’s perspective, and the interaction of staff with families.
Reaching out to people with learning disabilities and their families from black and minority ethnic communities
- Authors:
- POXTON Richard, et al
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2012
- Pagination:
- 32p.
- Place of publication:
- London
People with learning disabilities and their families from Black and Minority Ethnic (BME) communities continue to experience inequalities in health and social care despite various efforts to improve engagement. The aim of the Reaching out to Families project was to find new ways of addressing this issue - with particular attention to the role of third sector organisations and the use of action learning techniques in order to identify examples of good practice. Four areas agreed to become ‘development sites’: two London boroughs and two English cities, all with very diverse populations. The project used a broad action learning approach, supporting participants to work together to solve real work-based problems, acknowledging and building on actions already being taken in each site. A number of themes were identified through analysis of the interviews with families and in-depth discussion about the issues: effective identification of the needs, concerns and aspirations of different local communities; making sure that people understand what’s available and how local systems work; getting to grips with ‘personalisation’; developing local responses with community organisations; a competent workforce; working together; and being able to measure the impact of policies and practices on different BME communities. This report focuses on these aspects.
Families and personalisation project: key learning outcomes summary for families, local authorities and support providers
- Author:
- NATIONAL DEVELOPMENT TEAM FOR INCLUSION
- Publisher:
- National Development Team for Inclusion
- Publication year:
- 2012
- Pagination:
- 9p.
- Place of publication:
- Bath
The Better Lives programme was set up in response to concern about how families of people with learning disabilities were, or more commonly were not, becoming involved in and benefiting from the personalisation process. Specifically, the aim was to understand how to engage, inform and support families to achieve real personal outcomes beyond just a personal budget. The programme involved working with groups of families in 3 locations (Suffolk, Calderdale and Wolverhampton) over a period of 18 months. Despite each of the local authorities having people or departments responsible for engaging with and informing families, very few families who took part in the programme had previously been aware of the personalisation agenda and those few knew very little. The programme involved a variety of methods which included information sharing, planning, engaging with statutory services, and delivering real outcomes for the participating families. This document summarises the suggested learning outcomes from the programme for: working with families; local authorities; and support providers.
Utilising behavioural family therapy (BFT) to help support the system around a person with intellectual disability and complex mental health needs: a case study
- Authors:
- MARSHALL Keith, FERRIS Jan
- Journal article citation:
- Journal of Intellectual Disabilities, 16(2), June 2012, pp.109-118.
- Publisher:
- Sage
- Place of publication:
- London
Family members and staff who provide support to people with intellectual disabilities with mental health difficulties are more likely to experience increased stress. Previous research has demonstrated that psycho-educational family interventions have a positive impact on the person with mental health difficulties and on the family members who support them. This article uses a case study to illustrate the implementation of a family intervention with the support system around ‘George’, a 45 year old man with mild intellectual disabilities and diagnoses of schizophrenia and autism. Following behavioural family therapy, which encourages service users to take the lead in discussions about how their illness affects them and their family, the family members reported a decrease in levels of strain. Both the family and team members reported improvement in functioning within the support system. The authors concluded that the family based intervention was a cost-effective way of building resilience and reducing stress.
Love is simply not enough
- Author:
- TOMLINSON Caroline
- Journal article citation:
- Tizard Learning Disability Review, 17(1), 2012, pp.26-31.
- Publisher:
- Emerald
Drawing on personal experience, this article aims to tell the story of the author's son, who has learning disabilities, and how the family tried to ensure quality of life for him and themselves. The author explains the importance of families working together and ensuring good networks, or circles of support, of people who care about what happens. The article emphasises that the experiences of individuals and their families are central to an understanding of how to ensure a good life now and in the future, and provides examples of initiatives for people with learning disabilities and their families. The author reports that her son, now 23 years old, was one of the first people in the country to self-direct his own support.
The balancing act: meeting the needs of all children including an adolescent with disabilities
- Authors:
- KOCH Cecelia, MAYES Rachel
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(5), September 2012, pp.464-475.
- Publisher:
- Wiley
Meeting the needs of all children can pose a significant challenge to parents. The needs of children in any family may differ and compete; however this may be heightened when one child has a disability. The aim of this qualitative study was to explore parents’ experiences and strategies used when meeting the needs of all their children, including an adolescent with disabilities. The study was conducted in 2 phases: secondary analysis of ecocultural interviews with 12 parent-carers of more than one child, including an adolescent (10–21 years) with intellectual disabilities; and in-depth, semi-structured interviews with a sub-sample of 4 parent-carers. The findings showed that parents balanced their children’s needs through a combination of strategies driven by their goals, beliefs and values. Parents found this very challenging. They were always conscious of the needs of all of their children, although they could not necessarily meet all their children’s needs equally. Strategies that attended to all children simultaneously were preferred by most parents, but could not always be used. Parents, at times, used strategies that prioritised the needs of the adolescent with disabilities or siblings.
Reaching out to people with learning disabilities and their families from black and minority ethnic communities: guidance for practitioners from social care and health services in developing culturally competent practice
- Authors:
- COLE Angela, BURKE Christine
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2012
- Pagination:
- 19p.
- Place of publication:
- London
The Reaching out to families project set out to find new ways of addressing the inequalities that people with learning disabilities from Black and Minority Ethnic (BME) communities and their families experience in health and social care. The project paid particular attention to the role of third sector organisations and used action learning techniques to identify good practice. During the project it became clear that many families are left frustrated by their contact with statutory social care and health services. The identified themes revolved both around culturally competent practice and basic good practice around contact with families. This guidance was produced in order to support practitioners to respond effectively to people and families from BME communities. It comprises 3 parts: essential do’s; essential don’ts; and things to check out. In addition, 2 core elements of good practice with people with learning disabilities from BME communities which underpin all others are emphasised. Firstly, it should not be assumed that people from the same minority community share the same beliefs, aspirations, or social circumstances; person-centred approaches are central to an effective response. Secondly, it is important that practitioners go beyond a person-centred approach and consider the whole family.
Health care for disabled children and young people: a review of how the health care needs of disabled children and young people are met by the commissioners and providers of health care in England: special review
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2012
- Pagination:
- 48p.
- Place of publication:
- Newcastle upon Tyne
This review looked at the support available for families with children that have a disability. It focused on families that have children under the age of 19 with: a learning disability; autism or autistic spectrum disorders; communication needs; sensory needs; mental health and behavioural support; mobility needs; and technology dependence. In particular, this review looked at: the availability of specialist health services for disabled children and young people and their families; an assessment of the quality of support in a geographical area linked to primary care trusts; and the ‘building blocks’ of the care pathway that are of particular importance to families. The review presents the views and experiences of disabled children and their families as well as survey data from commissioners and acute hospitals about services provided from September 2009 to September 2010. Findings suggested that families felt access to and involvement in services was a challenge and that they waited too long for access to services and for initial diagnosis. Contributors felt services were not joined up and that different services did not work well together. Many disabled children and their families also reported they had not been consulted on how their care had been provided. There was also significant disparity between the experiences of disabled children and their families, which were overwhelmingly negative compared to the data supplied by primary care trusts, which showed high levels of access and user-centred care.
Commentary on "Love is simply not enough"
- Author:
- WILLIAMS Val
- Journal article citation:
- Tizard Learning Disability Review, 17(1), 2012, pp.32-35.
- Publisher:
- Emerald
Drawing on research findings and recent policy about personalisation to consider factors influencing the development of effective family and professional partnerships, this paper provides a commentary on Tomlinson's article about the development of a circle of support for her son, who has learning disabilities. The paper argues that in some cases families have been undermined by authorities responsible for providing support, and emphasises the importance of local authorities working more effectively with family carers and the voluntary sector. It also notes that although a lifelong caring role may be a positive choice for some families, not every family wants or is able to lead support services for their own disabled relative so it should not be a requirement.