Children with exceptional needs: Welfare, rights and caring responsibilities
All children are inevitably dependent upon others – physically, emotionally and ﬁnancially. Children need to be cared for. Critically ill children and children with severe disabilities or complex needs have magniﬁed needs according to their physical or mental health or impairments: ‘The much more extreme dependence of those with disabilities goes on forever, cannot be commodiﬁed to anything like the extent to that of normal children, and is much more extreme in any case.’1 Parents are entrusted with the primary responsibility for the care of children but depend upon others, professionals, family members, volunteers, or other parents of children with similar needs, to support them in fulﬁlment of their caring responsibilities, creating a web of dependencies, reliance and trust. In this chapter I explore gendered caring responsibilities through consideration of the welfare, rights and care of children with exceptional needs; that is, children who are dependent upon the care provided by others due to critical illness, complex needs or severe disabilities. I ﬁrst consider the impact of the welfare principle upon decisions about the care of children with exceptional needs, then the rights of children with exceptional needs and those who care for them before exploring the intensive, and gendered, nature of caring responsibilities for children with exceptional needs. My aim is to develop understanding of the complex nature of caring responsibility in human life in which children depend upon their carers, carers depend upon others to support them in fulﬁlment of their caring responsibilities and the state depends upon others to fulﬁl responsibilities to those in need of care.