What your NDIS experience tells us


NDIS is a huge change to how the disability sector works for people with a disability.  It provides families with choice and control over the services that they receive and has created consistency across States and Territories which never existed before.  

Most people with Down syndrome have found that the NDIS has led to access to better services and greater choice. But as with any major social reform, the implementation of NDIS has not been without issues. One of the issues of highest priority for our advocacy is making sure that the NDIS is working well for people with Down syndrome and their families.

The recent survey which we conducted on experiences with NDIS illustrate both the positive impact of the scheme and some of the challenges that are being experienced. You can read the detailed outcomes of the survey here: xxx.

Collecting data on the experience of people with Down syndrome and their families with the NDIS is just the starting point.  We have work underway to address a number of the issues that people have raised as concerns.

Access to the scheme

We have repeatedly heard that people are frustrated that people with Down syndrome do not have automatic eligibility to the NDIS.  The survey revealed that many families who spent a lot of money to get specialist reports in order to get access to the scheme. We have also heard from families who have told us about having to repeatedly prove the eligibility of their family member.  We are aware of a few families where people with Down syndrome have initially been denied access to the Scheme. In all of the cases that we are currently aware of, this has been overturned on appeal. Regardless, it is obviously very distressing to families to be denied access and stressful to have to go through an appeal process.  

DSA is actively advocating to the NDIA the need for a change to the access process for people with Down syndrome.  We have requested data from the NDIA regarding the number of people with Down syndrome who have been denied access and how many of these have been overturned on appeal.  We are providing NDIA with an evidenced-based argument that the current approach to access is leading to unnecessary expense and time for families as well as causing unnecessary administrative costs for the NDIA.  This work is underway and we will continue to work with the agency on improving the access process for people with Down syndrome.

Planning experiences

The results of our survey have shown that planning experiences are variable.  Some people have had good experiences, where as others have found it to be quite difficult.  It is concerning to find that nearly half of respondents indicated that the planner had a poor or fair understanding of Down syndrome.  Similarly concerning was that a third of people indicated that the communication of the planner was poor/fair. Given these results, it is perhaps not surprising that nearly a third of respondents indicated that they were not happy with their plan.

The NDIS has acknowledged the need to improve the experience of participants.  They are working on a new ‘participant pathway’ which includes a number of changes which should improve the planning experience. DSA has been providing input into this process through the Peaks CEO forum which we participate in.  In addition, DSA has been working with the NDIA on improving the information and training that planners have on Down syndrome. This has included the development of a ‘snapshot’ for planners on Down syndrome as well as input into a new training program being developed for planners.  This work is essential in order to improve both the participant experience but also to ensure that the right plans are being develop initially. This will hopefully reduce the number of unscheduled reviews and the backlogs that have developed.

Plan Implementation

The DSA survey has also revealed that some people are experiencing barriers to implementing their plans once they have been approved.  Key barriers include difficulty finding the right services or support workers, lack of services available, and lack of understanding of NDIS or the NDIS plan.

The NDIA is currently doing a lot of work around workforce and availability of services within regional areas.  The move to support more people to self-manage will also enable greater flexibility around the implementation of plans.  DSA will continue to provide feedback to the agency around workforce issues and availability of services.

We are also planning to address the concerns which were raised about information.  People have indicated that they want more information about NDIS and particularly information that will help them to develop a good plan.  They want to know about age-relevant goals and to be supported to think creatively about how to use NDIS supports to both access basic support needs but also to achieve greater inclusion and involvement in the community.  Over the next few months, DSA will be developing some age-specific resources to support people in the planning process.


The DSA survey on NDIS experiences has provided some very useful insights into how the NDIS is working for people with Down syndrome and their families.  We will be using the outcomes of this survey to inform our advocacy to NDIA as well as to develop better information resources for our community. It is only thanks to the willingness of our community to be involved through completing surveys or sharing their experiences that we can continue to advocate on your behalf.  Please stay in touch and contact me if you have concerns about your experience with the NDIA.

More to the story:

NDIS brings positive change but falls short in key areas

2018 National Survey Results (pdf)

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