- My name is
redactedand I am a mum of two girls aged 13 and 15.
Our youngest has been diagnosed with ASD2 (PDA profile) and ADHD. She has been registered with the NDIS for 6 years. The initial plan provided for her was woefully inadequate and I had to spend the next 3 months submitting a review. We were finally provided with an appropriate amount of funding to meet her needs and it literally saved our family. This is not just a glib phrase - I am not sure we would be a family without the therapies and support workers that have been life changing for our daughter. They have increased her independence exponentially and provided our family with a base of support that without we may not have survived her middle childhood years.
She is now a teenager and has different needs but still requires supports to be in place. Without them I am worried where she and our family will end up. I completely oppose the proposed NDIS legislative changes.
There are so many reasons why these changes should not be passed. The biggest one is the loss of dignity and independence that people with disability have finally been able to achieve with appropriate supports in place. The government’s scare tactics around the social and community supports that include people with disability can currently access through NDIS, like being able to ‘go out and get a haircut’ or ‘go out for coffee’ or ‘participate in a community activity’ are ridiculous and hurtful to all of us as humans. Can you imagine not being able to do these things yourself and having to rely on family or friends, if you have any, to support you to do these activities? All sense of independence would go out the window and they again would feel like a burden to family and friends.
This ‘care burden’ is notoriously going to fall to women and we will see some incredibly talented women currently in the workforce, once again having to give up their careers and rightful place in the economy. This is a devastating grief that most men would ever have to contemplate. My promising career tanked as our family lived in survival mode for many years even with NDIS supports. I was very lucky and able to maintain part time work as my daughter was mostly still able to attend school. I am still living on tenderhooks constantly worried that she may hit a period of burnout. This is likely a guarantee if we lose NDIS support. The domino effect on our family would be severe. I would have to decrease my work hours even further to have to support her and any education she was able to do at home.
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My other daughter, who is highly anxious after experiencing the high tension that comes with life with an Autistic PDA ADHD sibling throughout her childhood would be become further withdrawn and anxious with the increased strain on the family. My husband who already has high blood pressure would struggle further with stress and chronic disease symptoms would increase. All of us would become a further drain to the health system and cost the government even more money in the long run. I voted Labor in the last election and thought they were supposed to stand up for women’s rights, the most vulnerable era me in the community - people with disability and yet here we are with proposed legislative changes that will put the most marginalised people back in the dark ages.
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Even people of average intelligence can see that these NDIS changes are just cost shifting to so called ‘foundational supports’ and will actually increase impacts on the already strained health system. Does the Labor party really think people are that dumb when they spout how much they have ‘saved’ tax payers by reducing the cost of the NDIS? We all know that nothing has been ‘saved.’ In fact it has cost shifted to even more costly system - the health system and will be even more expensive as families and people with disability will be in crisis and need a lot more support to dig themselves out of the black holes they fall into after NDIS supports disappear.
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Don’t get me started on how much more strain will occur with every state and territory’s child protection system. Even with the NDIS as it is there are parents who cannot do it any more with the lack of real practical support for their child/ren with disability. No average person could expect to be a functioning parent in many of the situations families with disability find themselves in. There will be more parents like the recent Mosman Park family where death seems more attractive than life with children with severe disabilities with the proposed changes to the NDIS. What kind of society have we become? Are the politicians going to be able live with themselves when suicide and homicide of families with disability become a regular news item?
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What does the ‘all appropriate treatments’ even mean as a proposed change to be able to access NDIS? The hoops that people with disability have to jump through now to be eligible for the NDIS are too much of a burden as it is and cost an enormous amount in diagnostic testing and for professionals to write reports. Are you saying that a person or family with disability has to try all treatments before even coming to the NDIS for support - who is going to pay for all those treatments? Isn’t that the point of NDIS to support the cost of therapies and support? Would you expect someone with cancer to
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go and self-fund a whole of different treatments before coming to the public government funded health system for treatment - of course not!
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The proposed new change where NDIS supports can be cut without appeal also strike me as very undemocratic, especially if you combine this with AI algorithms to determine the supports a person with disability should receive. There will be no checks and balances in such a system. We will be in the robodebt situation all over again. That will not get the Labour party anymore votes…
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What the committee needs to do is pause all changes until authentic and widespread co-design has been conducted with people of all different disabilities across Australia to determine considered and equitable changes to the NDIS. This includes any off shoot services such as foundational supports. Alternate streams of support, if decided to be developed, should also be set up before changes are implemented. This is basic common sense to ensure no-one falls through service gaps.
Do better Australia and the Labor party.
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