National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 116

Dear Committee

Re the NDIS bill: autism level 3, severe intellectual disability and profound expressive and receptive language disorders, we are extremely concerned about the future

For 32 years since suffered a major regression, we have spent huge amounts of our own money, taken out additional mortgages, given up careers in order to help as best we can.

We had our first meeting for under the NDIS on 1st July 2013, when it was in its “trial” phase, and soon after had an NDIS plan. However, if a family member hadn’t assisted, would not even have been able to access appropriate respite: indeed within a few years of being on the Scheme, had lost both day support program and the respite program had accessed successfully. A family member funded a dome for , and we became SDA providers for . It also meant that we had to transition to living away from home much sooner than we would have liked (at an increased cost to the NDIS). This was the only way forward given that we live in a regional area in Tasmania.

In the last two years, the Scheme has become so much harder to navigate. With receiving funding for SIL, has to have a Positive Behaviour Support Practitioner. along with other allied health professionals, have concluded after extensive assessment and writing reports that requires 2:1 support to enable to be able to live best life and access the community. Their firm view is that that is the only way to keep support workers and the community as safe as possible, given propensity to run off without regard to surroundings including traffic, and to have very sudden behaviours of concern.

However, for the last two years, we have been battling planners who either do not read the reports, do not understand them, or wilfully ignore them. We have had a number of reviews, which take up huge amounts of our valuable time and resources to no avail. If funding levels work and keep stable, then that is a success. If funding is reduced, then will regress - we have seen it happen before, and we are not prepared to let it happen again.

The Scheme is far too bureaucratic. We should not have to obtain reports on an annual basis to tell the NDIA what it already knows: that has a lifelong disability, and all her reports every year say that has a lifelong disability and is highly unlikely to have any more than incremental improvements - but we would also add that any regression can be catastrophic for and it would put and support workers and the community at great risk.

Added to this, we have had a number of care providers. We have always had an active role in life, but after a while two of them (and as we speak now a 3rd) have decided that while they are happy to receive a big funding package, they are not prepared to do the work required, even with our support and assistance. They are not prepared to follow goals in plan in order for to have every opportunity to fulfil potential, and would much rather “babysit”, which would leave to regress.

For some reason it seems that adults with autism, intellectual disability and who are non verbal do not seem to matter to the NDIA planners, or even perhaps society. The media portrays many people with autism as being “odd” but highly intelligent. Not all people with autism fall into that category, and many do require high levels of support, which is expensive. However, support workers who care for these people are then employed, pay taxes, and do not have such a big claim if any on welfare, which has to be a win-win.

For a rich country such as Australia, if we can afford to support a huge team to go to the Olympics, to spend money on recreation facilities for communities, fund football stadiums etc, we can and should look after our most vulnerable.

We would also argue that the NDIS is about people who have lifelong disabilities. If they are going to have their plans reduced, then certainly the administrators of the Scheme should be reduced and have their

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 116

incomes reduced. It is simply not fair to have the most vulnerable forced to have their care needs put at risk. It is simply dangerous.

To be very clear: there are many young people whose plans are underfunded. Our young people are being punished when the NDIA chooses to pay rorters by not checking what they are paying for.

We do not recognise the NDIS as it was presented to the country in the early days. There is a constant barrage of changes, all of which are highly complex, and time consuming to understand. We all deserve better than this.

Kind regards

Sue and Stephen Ferris