Submission 2050
I identify as a person with disabilities, and I also have a child with a disability. I wish to speak to the proposed amendments about reducing funding for specified groups of supports. I think it is fundamentally disingenuous for this government to be removing literal lifelines from disabled people at a time where our futures have never been bleaker. We are regularly forced to watch while our government ignores the fact that the wealth inequality in this country grows every day. It seems like more thought is given to protecting the interests of billionaires (including those exploiting our country’s natural resources), and corporations, rather than the most marginalised among us. I don’t think it’s right that people without disabilities can make these decisions without listening to the community properly, knowing that disabled people and their loved ones are often those with the least power.
My toddler is 2 years old and was recently approved for an NDIS plan. He has been diagnosed with Global Developmental Delay, because he is considered severely delayed in all measures. He is the most wonderful child, and as a neurodivergent parent, I was prepared for the possibility of a child who thinks and learns a bit differently. But the fact remains that he does need extra help and support compared to other children his age - and that’s okay!
His NDIS plan funds vital supports in allied health, including speech therapy and occupational therapy. We feel extremely lucky to have access to this, however, we now fear that it could be taken away. I have seen discussions about “capacity building” and putting responsibilities back onto parents, without considering repercussions. Our family has already reduced our earning capacity to spend more time with our child due to his additional needs. We are fortunate that we can do this, and that we actually cherish the extra time together. However, as a low income family, it’s already a struggle. If we were suddenly expected to become speech therapists and occupational therapists ourselves, I worry that we will burn out. Both my husband and I have severe ADHD, and with the treatments we are lucky enough to access (not through the NDIS) we make it work. But not everyone is so lucky. During a cost of living crisis, life is like a (rented) house of cards. If you add one more thing to the never ending list of extra responsibilities carers of people with disabilities who also have disabilities themselves face, things could all come tumbling down. I was once the family breadwinner. I do not foresee being able to save for our family’s secure future if we are not given the support to help our child develop more independence. We have been told there is a strong likelihood of permanent disability, and we just want to make sure we have the tools to give him everything he needs.
I am concerned about the disproportionate impact changes to the NDIS will have on women. When the government stops funding supports, the needs of disabled people don’t magically disappear. We know that caring responsibilities are unequally split, and in the many cases that already exist where funding is either not available or not adequate, it is typically women who find themselves with the extra burden.
As someone who spends a lot of my time invested in feminist advocacy, I am concerned about the ways that this unequal labour will further entrench inequality for women, girls and gender diverse individuals. I am on a domestic and family violence lived expertise policy advisory
Submission 2050
committee. At a time where misogyny is rife, it is irresponsible of the government to contribute to removing women’s economic independence, which typically happens when women are expected to adhere to traditional “gender roles”.
The NDIS should consider additional funding towards services helping parents to function in a healthy way - what you don’t see is the constant burn out some families face. It’s hard to keep a functioning home and feed yourself properly when your child is your priority. Things like domestic support work, cleaning services, respite care could benefit families and give them the energy to perform disability related care tasks more effectively. The NDIS should also consider those of us who are both disabled AND carers of disabled people. We face additional challenges, and while ADHD is not supported on the NDIS (which is very frustrating), this is where a model of funding for respite/auxiliary supports to help us function all together could be very beneficial. We struggle with executive function, which is more pronounced when stressed or otherwise unable to meet our own needs.
I have seen recent media reports of the shocking decisions some parents have made around ending children’s lives - and while I never condone such actions, these sickening, yet desperate actions will become more common if funding is stripped.
Almost 1 in 5 Australians currently have a disability, and yet only a small proportion are even on the NDIS. Those who are often face the indignity of having their needs questioned by people without medical or other relevant training, despite providing evidence. The rhetoric and media coverage surrounding changes in the Budget has also been infuriating - fuelling existing ignorance from Australians who are lucky enough not to need the NDIS. Yet anyone could become disabled at any time. The media seems to be complicit in furthering the misguided narrative that NDIS money goes directly into the pockets of people with disabilities or their carers. I am regularly disgusted by the ignorance repeated by the general public and not corrected by the press or those in leadership. They assume that we get assessed for a particular amount of funding, and then can basically go on lavish holidays. This is obviously not the case, but I feel that the government has been happy not to communicate this more effectively, to benefit from less outrage at times like this, at times of devastating pushback.
On the topic of fraud - it would make much more sense to enforce stricter regulations on providers, and limit their ability to profit. For profit systems are often exploited and don’t have the people who matter at the heart of things. There should be more oversight. That is where excess money could be saved, instead of cutting it from those who absolutely need it. Even if a tiny percentage of participants are deemed to be fraudulent, it is collective punishment to remove services from everyone else as a result of this. Given the complexities of approval in the first place, I am also extremely wary of assuming fraud by any participant - just like the random politicians making decisions about disabled people’s lives, I don’t know the full story about these individuals. I agree with the cutting back of reassessments, especially in cases of permanent disabilities where help will always be needed.
Submission 2050
These proposed changes have brought genuine terror and fear into the lives of people who are already struggling to cope in an uncaring society. I feel like nobody is listening, yet I have relative privilege. I can get by, I have support from my partner and family, English is my first language, and I can perform basic daily living tasks, even though this is with more difficulty.
worry about people who will have to quit their jobs - disabled people who can work because they are supported by a support worker in the workplace. I wonder how they will feed themselves. I worry about the single mothers fleeing domestic and family violence, who may have to make impossible choices and return to abusers because it’s the only way they can afford to balance their extra caring responsibilities with keeping a roof over their heads. I worry about children - like mine - who may never have the opportunity to show the world who they can be. Most of all, I worry about all the people who will feel that this is a sign this world is not for them anymore.
How many lives will be lost because this rich country cannot take care of its people properly.
Finally, I believe that this inquiry has not been given the time and publicity that it deserves. Australians with disability (or those caring for those with disability) did not have ample time to prepare a response. As someone in both groups, I think this is shocking. We are people who often have limited time and capacity. I have heard from some other members of the community that accessibility provisions for making a submission have been poor to begin with. I wish I had more time to write down everything I wanted to say, however, I worry it will not be heard anyway. Instead, I will invest my time in nurturing my child, and hope that this government sees him as worthy enough to also invest in.
Please listen to lived experience, and lived expertise. Please do not add to our load with this Inquiry, only to tick a box and say you did it. Thank you.