WEDNESDAY 23 SEPTEMBER 2020 from 1:00pm to 2:30pm
Save Our Sons Duchenne Foundation will welcome Shadow Minister for the National Disability Insurance Scheme (NDIS), the Hon Bill Shorten MP, and Senator Deborah O’Neill to talk about the challenges being faced by the Duchenne and Becker community in Australia as they try and secure services, equipment and assistance through the NDIS.
Join the Save Our Sons Facebook Live Event from 1:00pm to 2:30pm on Save Our Sons Facebook Page https://www.facebook.com/SOSDuchenneFoundation
A few issues relating to the NDIS from our keynote Report, Living with Duchenne & Becker in Australia: Supporting Families waiting for a Cure:
- A “cost-of-disease” study undertaken for this report shows that Duchenne in particular is associated with significant lifetime health and social care costs. It is estimated that these can total up to $2.25 Million for a child living until their mid-thirties. In addition, informal care costs total up to $630,000 in terms of reduced female participation in the workforce. On average, the financial cost of Duchenne over the lifetime of a child born today can be expected to be $1.3 Million with the cost for a child living to their mid-thirties of $2.88 Million.
- A remarkable 16.6 per cent of respondents to a survey of families completed for the report stated that the $22 Billion NDIS had worsened their situation, and a further 31.1 per cent said that the scheme had neither improved nor worsened their situation – an astonishing 47.7% in total. Delays in receiving equipment was a key issue raised by those indicating that the NDIS had worsened their situation.
- Families reported high out-of-pocket medical costs, ranging to $1800 per month. Out-of-pocket costs were much higher in NSW than in other States and Territories. Out-of-pocket costs in NSW were $430.43 per month on average, compared to $250 per month on average across the other States and Territories.
- A high proportion of parents, being 23.5 per cent, have more than one child with Duchenne or Becker, with the majority having two children with Duchenne or Becker.
Got a question? Email the Save Our Sons team at firstname.lastname@example.org, questions submitted by 4pm, Wed 16th of September 2020 will be posed to our special guests.