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Paying the piper and calling the tune? The relationship between parents and direct payments for people with intellectual disabilities

Background  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.

Materials and methods  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.

Results  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.

Conclusions  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.

Access source material through DOI
Additional Titles
Journal of Applied Research in Intellectual Disabilities

Key Information

Type of Reference
Jour
ISBN/ISSN
1468-3148;1360-2322
Resource Database
Social care online
Publication Year
2003
Issue Number
3
Volume Number
16
Start Page
219-228