Critical care decisions in fetal and neonatal medicine: ethical issues
Living with disability
35 Discussion of disability in the specific context of the long-term future of severely ill babies must pay close attention to the relationships that will be available to that individual, and broader social provision. Contemporary understanding of ‘disability’ means that terms such as ‘impairment’ and ‘normal’ and ‘abnormal’ have to be understood within a wider social context. Increasingly, disability is no longer viewed simply as something that resides in the body of a person and which has to be coped with by him or her and their family, in isolation. Disabled people, their families and many researchers tend to refer to a ‘social’ model of dis- ability rather than the ‘medical’ model, which is embedded in much of the medical literature describing outcomes after neonatal intensive care. Parents may be presented with overly negative images of the future lives of their children, which are not balanced by more positive information about the day-to-day lives of disabled people (paragraphs 3.29–3.34 and 7.3).
36 Caring for a child with disabilities is likely to entail the need for support from a variety of sources, including healthcare, social services and educational systems. Many children will be cared for at home, which can place additional demands on their parents and family. It has become clear to us that accessing the relevant support or care can be very difficult, as a coordinated approach across services is not in place in the UK. Support may not be tailored to the needs of the child or the family, and information for parents on services is often inadequate (Chapter 7).