Sustaining the Family: Meeting the Needs of Families of Children with Disabilities

Abstract

A dramatic rise in the survival rates of children born with disabilities (particularly those born prematurely) has been reported in the last decade. The nature of their disabilities is, at times, significantly different from that previously reported, posing problems for the families attempting to nurture the development of these children. Barry Carpenter, Chief Executive of Sunfield, considers the needs of the self‐defining family, the implications for interdisciplinary practice, and the changing pattern of early childhood disability. He asks a fundamental question: ‘How can professionals sustain the family of a child with disabilities?'

Experiential knowledge challenges ‘normality’ and individualized citizenship: towards ‘another way of being’

“…In challenging dominant images of normality this paper contributes to earlier work which has argued that parents of disabled children often do not subscribe to the personal tragedy model of disability (Glendinning, 1983;Goodley and Tregaskis, 2004;Roll-Petterson, 2001 andCarpenter, 2000).…”

Šeimos, Auginančios Vaiką Su Negalia, Realybės Mokslinis Rekonstravimas

“…Tyrimai rodo (žr. Dellve, Samuellson, Tallborn ir kt., 2006;Carpenter, 2000), kad tėvo ir motinos streso išgyvenimai vaiko negalios situacijoje yra panašūs. Tačiau tyrinėjant šeimos išgyvenimų realybę svarbu įtraukti visus šeimos narius, o ne tik apklausti juos pavieniui ar konstruoti "šeimos jausmą" remiantis tik motinos pasakojimu.…”

Parental Involvement in Open and Distance Schooling: A Case Study of Parental Perceptions at NAMCOL, Namibia

“…Literature shows that parents have an inherent concern for the wellbeing of their children (Carpenter, 2000;Khong and Pak, 2005;Altichul, 2011). Regardless of the misconceptions about NAMCOL and the open school system (Brown, Haufiku and Paavo, 2011;NAMCOL, 2012), parents still think NAMCOL is a second opportunity in life.…”

“…Findings from the interviews indicated that their children are happier with the style of teaching by NAMCOL tutors compared to what they were provided with in the conventional education system. Carpenter (2000) claims that it is inherent in all parents to long for a brighter future for their children. This hope for a brighter future is captured in the initial phase of simply ensuring access to an educational institution.…”