Childhood Dementia and the National Disability Insurance Scheme (NDIS)

Right now, in Australia, there are an estimated 2,300 children and young people suffering from dementia. Their quality of life is extremely poor, the burden on their loved ones who care for them is immense, and their needs are not currently met by health and social systems. Families report that while the NDIS is vital, the progressive needs of their child(ren) are not understood or accommodated and they are constantly 'battling', building and defending their case for support.

Appointment of specialist advisors for children with dementia should be the first step to improving the access to the NDIS for children with dementia. This would lead not only to better outcomes for the children, but efficiencies for the NDIA.

Childhood dementia and the National Disability Insurance Scheme (NDIS) outlines the benefits of specialist advisors and provides information on current family experiences and the need for change.

Download the discussion paper