Abstract
Children and young people with disabilities and chronic require a range of health and disability support services in order to reach their potential, and it is undesirable that a paucity of data should preclude them featuring in prioritisation, planning and resource allocation decisions.
This report reviews a range of routinely collected hospital admission, mortality and survey data, with a view to identifying the numbers of children and young people with chronic conditions and disabilities accessing secondary health services in New Zealand. In addition, given a trend towards deinstitutionalisation and a greater emphasis on community care, this year‘s in-depth topics consider common issues faced by the families of children and young people with chronic conditions and disabilities, and their implications for health and disability support services. Specifically, the issues considered in these topics are:
1. Disability, Disability Support Services and Transitions to Adult Care: This topic provides a brief overview of disability, disability support services and issues with transition to adult care. It begins by briefly defining disability, before reviewing the most common conditions leading to disabilities in New Zealand children and young people. New Zealand‘s historical approaches to service delivery for those with disabilities are then reviewed, before an overview is provided of New Zealand‘s current disability support services, and the areas of unmet need most commonly identified by families caring for children and young people with disabilities, both in New Zealand and overseas. A final section considers the transition of young people with disabilities from paediatric to adult care, some of the difficulties inherent with this transition, and a range of overseas models which consider how such transitions might be improved.
2. Models of Care for Medically Fragile Children: Medical advances over recent decades have resulted in an increase in the number of medically fragile or technology-dependent. This, in combination with advances in portable technology and a trend for shorter hospital stays and less institutional care has meant that there are increasing numbers of children with complex health care needs living at home. This review examines the funding supports available, some of the inherent problems that arise from caring for medically fragile children at home, and some models of care. The section concludes with a review of transitions from paediatric to adult services for adolescents with chronic medical conditions.