Refocusing on the Parent: What are the social issues of concern for parents of disabled children?

Abstract

A questionnaire was constructed to analyse the efficacy of service provision for disabled children from the parents' perspective, as well as the needs and issues pertinent to parents (Middleton, 1998, 1992). The familial and personal data identified deep parental concerns and fears regarding professional attitudes and dominance, neglect of parental knowledge, lack of counselling and therapy, coping in the future, support, and the child's aesthetics and body (Brown, 1998). Results indicate that professionals continue to control the parent-professional relationship, assuming the role of 'expert', rather than integrating and consulting parents in a negotiate decision-making process. Parental needs and issues are prescribed by professionals (Oliver & Barnes, 1998), thus marginalising and disempowering the parent (Appleton & Minchom 1991), and reducing opportunity for parental involvement and participation in an equitable 'partnership' relationship with professionals (Dale, 1996).