The National Disability Insurance Scheme (NDIS) has brought positive change for most people with Down syndrome but significant challenges remain, a 2018 national survey by Down Syndrome Australia (DSA) has found.
DSA CEO Dr Ellen Skladzien said the survey found people with Down syndrome and their families are receiving more support than ever before.
“Respondents are experiencing positive impacts on independence, wellness, employment and education.
“However, our 2018 survey found people continue to experience challenges interacting with the NDIS and it can be difficult to understand how the National Disability Insurance Agency (NDIA) works,” Dr Skladzien said.
“People with Down syndrome and their families do not always understand how plans developed by the NDIA are meant to be implemented, and the level of knowledge at the NDIA about Down syndrome is not as good as it could be.
“Survey respondents said they want more information on how to get ready to enter the NDIS. They want to know more about ‘relevant goals’ and the kind of evidence they need to produce to be eligible for assistance. People also want better support to self-manage their NDIA plans.”
Better access to peer support and advice from other families who have negotiated the system are among other suggestions to improve the NDIS.
“NDIS participants want greater consistency, staff who understand Down syndrome and a more appropriate process for access to the scheme,” Dr Skladzien said.
The DSA 2018 national survey attracted 396 respondents, representing every Australian state and territory. More than half of respondents (57%) were from metropolitan areas, 38% were from regional areas and 4% were from remote areas. Aboriginal or Torres Strait Islander people accounted for 2% of total respondents.
More to this story:
Comment by Down Syndrome Australia CEO Dr Ellen Skladzien
Read the 2018 national survey results (pdf)
Media contact:
Dr Dominic O'Grady. M: 0400 110 169 E: dominic.ogrady@downsyndrome.org.au
