National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1561

I write to you as a mother of a 37 year old son with intellectual disability and a wife to a husband (71) who has suffered from Parkinsons Disease for the last 20 years.

I have volunteered as an advocate for people (especially children and young people) with a disability for almost 30 years and have been involved in a consultative capacity cross a range of disability areas over these years, including working with Bill Shorten in the early days of the concept and creation of the NDIS. I strongly urge you to consult closely with Mr Shorten, who came to truly understand what we, parents and advocates, were fighting for back at that time. We were all exhausted and terrified about what would happen to our children when we died. At that point, some 10 – 15 years ago, this fear was well founded – there was nowhere for our children to go or services to help them survive, if we were no longer there.

The NDIS was a ground breaking and visionary achievement, when finally launched. It was built in recognition that people with disability were shut out of the world around them, left behind, forced into poverty, isolated in their homes and denied the support they needed to live an “ordinary” life. And it has gone a long way to helping many of them “enter” this ordinary life, because it was created around individual need. Each person’s support should be based on their Individual disability, life, family situation, home, community and goals. But the funding cuts currently proposed are “general” and over whole categories of support with NO consideration of each person’s circumstances and dignity. Every single person with a disability is completely different to the next!

The major issues/problems within the NDIS you should be considering before making changes to the current scheme are:

• The NDIS was originally conceived to address the needs of people with significant and permanent disability, not people with possibly mild or temporary disability which could be managed by the State based disability services (which everyone was using prior to NDIS). This was reflected in the projected funding budgets created at the beginning of the NDIS. But this goal evaporated quickly as the NDIS came on tap. It grew far too quickly and accepted categories of disability not originally expected along the way. Then as the State based disability service started to disband (because the Allied health professionals could earn far more in the NDIS than in the State disability services) , panic set in and every family gravitated to the NDIS as there was

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1561

nowhere else to go. And as they were increasingly accepted, NDIS costs started blowing out substantially and understandably. This was all sparked by very high maximum hourly rates as set by the NDIS, which became the new “normal” hourly rate for these services. The new Thriving kids programme is an example of government strategy to deal with this problem, but as the NDIS pay rates are now universal, I doubt that the funding issues will improve, but rather simply move to a different government organization?

2. ALSO and very importantly, when considering the finances of the NDIS, (and lost from the collective government memory it seems) is that the original Productivity Commission Report on the NDIS emphasized that the services provided by the NDIS would allow many parents/carers to remain at work or go back to the workforce, thereby boosting family incomes and economic productivity around Australia to partially offset the rising costs of the NDIS. (I had to stop working , as an example, to look after my son). But this seems to be have been conveniently ignored by recent governments. Noone has provided the “net” rise in NDIS costs, when considering the financial and mental health benefits Australia has received from many more people being able to work and have a better quality of life.

3. Fraud – the degree of fraud which has occurred almost from Day 1 of the NDIS has been shocking. BUT this should NOT be a reason to then penalise the very people the scheme was set up for. That was administrative error by a government owned body and as such , needs to be responsible and accountable for it and for dealing with the problem! Do not make the most vulnerable people in Australia suffer for the problems of others. This would truly be unconscionable!!

Please consider all these points, before politicians (who may not be entirely familiar with the conception, the history and the enormous benefits of the world beating NDIS scheme), make random, across the board decisions to cut funding from the very people at the core of this scheme, for whom it was created – those with profound, permanent disability and their families.