UNCRC Series

17, Oct 2019

All children have the right to appropriate and equitable support from Government services. Rare diseases can bring extra challenges for children and their families. Health, disability, and education are all areas that families may need to be supported in. They may need to alter their homes for a wheelchair, or perhaps need some changes made at school to help their child. The Government provides assistance in ways such as the National Disability Insurance Scheme. This aims to identify the support needed and helps to provide the resources required to support those needs. It is important that the Government regularly reviews their support programs, as these support services are very important to the families of children with rare diseases. Australia’s first National Strategic Action Plan for Rare Diseases is currently in development and includes a key focus on care and support, which is informed by a new report, ‘Disability and Rare Diseases: Towards Person Centred Care for Australians with Rare Diseases’.

Share This