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Paying the piper and calling the tune?: the relationship between parents and irect payments for people with intellectual disabilities
- Authors:
- WILLIAMS Val, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 16(3), September 2003, pp.219-228.
- Publisher:
- Wiley
The aim of this paper is to investigate the role parents are playing in direct payments provision for their son or daughter with intellectual disabilities. The paper draws on a UK-wide inclusive research project, carried out by researchers who were members of an organization of people with intellectual disabilities. The purpose of the project as a whole was to explore what support works best for people with intellectual disabilities to access direct payments provision in the UK, and one of the key supports for certain people was found to be parents and families. Drawing on interviews with 29 family carers, the researchers found that parents were often strong advocates of independence for their son or daughter, and only acted as barriers to direct payments when they did not have sufficient information. Parents were found to be playing significant roles as initiators, managers and supporters of direct payments for their son or daughter; however, these roles were matched by important gains in quality of life and relationships within the family. The paper considers the implications of the power balance between persons with intellectual disabilities, their parents and their staff. Direct payments can alter that balance radically, but it is still important to have a good, independent direct payments support scheme to enable the person with intellectual disabilities to be in control.
Room to move: a book for parents of young people with learning disabilities leaving home
- Author:
- COWEN Alison
- Publisher:
- Pavilion,|Joseph Rowntree Foundation
- Publication year:
- 2001
- Pagination:
- 114p., bibliog.
- Place of publication:
- Brighton
Leaving home is a rite of passage which most young people take for granted. For young people with learning disabilities, the decision to leave home usually has to be taken in a more carefully planned way. The book looks at the practical and emotional issues involved when a young person leaves home to live independently of their family. The book draws on the experiences of parents and young people, showing how they cope during and after the move. There are practical tips for parents and also views from the people who are the focus of the book, the young people themselves.
Information needs of parents about learning disabilities
- Author:
- McCONKEY Roy
- Journal article citation:
- Journal of Learning Disabilities, 7(3), September 2003, pp.211-219.
- Publisher:
- Sage
A survey of over 400 parents and carers of children and adults with severe learning disabilities was undertaken in N. Ireland. The aim was to identify the persons approached by the parents, the information required and the means used. The data are relevant to the setting up of national information centres as proposed by the government. The most common informants were social workers, staff in schools and centres, and GPs, but little use was made of voluntary services. A similar pattern was found regarding future informants. The most common topics were available services, leisure and holidays, and benefits. Parents of children under 10 were more likely to want information on education and therapies. The preferred means of getting information was through face-to-face contacts in the home.