‘I have got my life back’: users' experience of direct payments

Abstract

After years of activism by disabled people's organizations, the Community Care (Direct Payments) Act 1996 made Direct Payment (DP) schemes a reality. Proponents of DP argue that it allows greater freedom and control for those people using it, but as these programmes only came into effect in 1997, few studies have tried to substantiate these claims. This paper reports on a two‐year evaluation of two DP schemes in Wales. Using primarily users' feedback the paper focuses on the effects of DP and difficulties encountered, as well as why people chose—or did not choose—DP in the first place. User responses indicate a broad range of beneficial outcomes, including improved self‐esteem, increased control over lives, deeper and more lasting relationships, and new interpersonal, vocational and lifestyle opportunities, as a result of the greater flexibility and freedom of choice enabled by DP. Family carers expressed similar satisfaction with DP schemes, also citing greater freedoms as a result of increased flexibility. While some potential users expressed concern over the administration of a DP scheme, users found that, with support from a user driven Independent Living Scheme, the administrative burden was manageable, and that ultimately the DP scheme was a welcome approach to support.