National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 200
I am the autistic mother of an autistic ADHD young adult and implore you to totally rethink the changes proposed to the NDIS. Recent media attention on the NDIS has shown the Minister vilifying certain disabilities and talking about the “most disabled” as though there is some type of scale. It is not the diagnosis that determines the level of disability, it is the impact it has on that person’s life.
As a late diagnosed autistic woman I now know it is autism that has robbed me of fulfilling the potential that my academic abilities suggested I could achieve. I wasn’t unmotivated, I was unsupported and overwhelmed and the right help, understanding and accommodations could have changed my life. I did have a successful career, but it was so highly stressful that I could not fathom how I would cope with both parenting and a career. Parenting has been a huge challenge too, trying to advocate for my children when I found the school environment traumatic as a child, then trying to assist my child struggling even more than I did, still not understanding that the struggle was autism. She nearly died because she was misdiagnosed with mental health issues, hospitalised and over medicated. It took a wonderful psychologist to work out that she was autistic, and that I couldn’t see it because I am autistic too.
The NDIS was set up to help disabled people lead an ordinary life. That is all we ask, and we are grateful for the support it is now giving us. But we have gone through too much. Diagnosis and constant questioning of our functional levels and reassessments are extremely stressful, that is not an ordinary life. Those in the scheme have shown they have a lifelong disability, please don’t accept a scheme that makes us keep on having to prove this, it is soul destroying to have to keep discussing deficits and failings.
Everyone’s ordinary life looks different, and even within a type of disability everyone’s needs are different. So having lists of what should and shouldn’t be funded based on disability does not work. For example being told you can have a support worker to help you shop and cook as your executive function is so bad you can’t meal plan or your sensory overwhelm is so high you can’t go to the shops. That sounds great except I have executive dysfunction and my house is a mess so I would need help to get that under control first, I also have a disabled teenager who cannot stand having other people in our home and becomes distressed. So funding the preparation cost of some pre-prepared meals either delivered or from the supermarket, while my teen continues to work with her psychologist around the idea of accepting some support and developing a relationship with a support worker with the aim of her becoming comfortable with others entering the space and helping us get it clean and tidy, is a much better option.
There have been so many media articles about participants using their funding inappropriately, it’s clearly a planned attack designed to sway public opinion. It’s also being used as an excuse to force participants to only use registered providers. As someone on the scheme what I see is large registered providers trying to push participants to overspend on their services and then ask for a plan reassessment to get more funding, they literally ask to see your plan the moment you book an OT appointment, then tell you how much of the funding they will be using and that you’ll need an early review, the report for that will use up any funding you have left. I’m bombarded with ads on social media for respite or STA providers, NDIS registered companies, who will book you into a hotel or resort and arrange experiences or activities charging you the maximum rate plus a huge booking fee, but providing no actual support and giving you gift vouchers to pay for meals etc. It would be far cheaper to have a travel agent do it than a “registered provider” yet we’re being told making all providers registered is the answer. The answer I’m seeing to this is to force respite to be in “residential care” type facilities. Many disabled people have trauma from such facilities and all they want is a break both for and from their informal carers and possibly a chance to be supported to trial
National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 200
some independence, so allowing them to have accommodation, support and activities within a budget should be what matters and the choice should be up to them.
There are so many other areas where this bill is removing choice and control from disabled people. We are scared, we are scared of having to undergo more degrading assessments, we are scared of having to continue to prove we are worthy of support to public servants who don’t understand that our disabilities, be they physical, neurological, hidden or visible are very real but in some cases we’ve spent a lifetime trying to hide them. We are scared to spend our budgets as we risk being ordered to pay it back, even when it is on things we so clearly need, we are scared to ask for what we need and be seen as greedy. We are scared of this bill, it lacks detail, it gives the minister power to decide what is or isn’t a suitable support, why is he more qualified than the reports (reports the NDIS demanded we get) done by professionals to say what we need help with. We are scared that we are going to be left unsupported, stuck being told to use currently non existent foundational supports or to only use registered providers, many of whom only see us as a commodity, we are scared we will not get to choose the provider and support that is best for us.
I had been hopeful that with the support of the NDIS my daughter could complete her university degree and go on to a fulfilling and productive life needing minimal support and contributing the huge amount she has to give to society. Now I am scared. Her clinical psychologist helps her understand the world around her and her response to it, and has helped her to leave a dysfunctional relationship where she was preyed upon due to her vulnerability. A support worker or mentor at university could teach her that academic staff are not to be feared and help her make safe friendships within her course. Help with Daily Activities has given her assistance with tasks most people take for granted, who could have known that that “messy bun” was actually a sign she hadn’t brushed her hair for a week and needed help. Assistance with community access has seen her find a sporting team that accept and welcome her and are a safe and positive group of friends, ongoing assistance with individualised support could see her flourish in her sport. Support in employment could have prevented some unpleasant and frankly illegal experiences in the workplace and would allow her to gain confidence and be ready to start her career, as well as planning now to ensure that the career she chooses has the flexibility she needs to accommodate her disability. She wants an ordinary life, she doesn’t want a package of disability supports for autistic people, she wants tailored support now so she can flourish and not need it in the future.
Please don’t get lost in the rhetoric of the minister, go back to the NDIS review, fix the issues that have been identified with the current system instead of throwing it out and creating a whole new set of issues. Ensure, no matter what happens, that the views of disabled people don’t just have to be considered, but that they MUST be involved in setting policy. This is about real people’s lives, there is a real risk that people who lose support will lose their lives, we are scared.