Health minister wants to cut disability support by 99% without legislation - Greg Jericho
Labor's cruel NDIS cuts will make it worse for families like mine
In the year’s budget, the government decided to cut the NDIS and in doing so will destroy lives.
The nominal funding cuts didn’t look too bad – at least spending remained steady:
But in real terms, it was budgeting for a 12% fall:
The NDIS legislation – cruelly titled “National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill” – outlined how severe and arbitrary those cuts would be.
It gives the health minister the power to use regulations to “to reset funding for groups of supports like social, community and civic participation and capacity building”.
The Explanatory Memorandum provides an example of how this would work:
“Example - Omar
Omar has an old framework plan with $40,000 in the Assistance with Social, Economic and Community Participation budget. The Minister could make a determination that the funding component for Assistance with Social, Economic and Community Participation will be reduced by for example 25 per cent.
If Omar’s plan is renewed, the amount that he can spend on community participation supports under his new plan will be the funding amount set in the new plan for community participation reduced by 25 per cent. This means he will have $30,000 in his Assistance with Social, Economic and Community Participation budget.”
Nothing in the example relates to Omar’s needs. Nope, the minister has just decided that everyone’s funding for social, economic and community participation is to be cut by 25%.
The law will be such that any future health minister can cut by up to 99% without any need for legislation.
That’s a cruel hell of a law.
Thing is right now my wife and I are in the midst of NDIS hell.
This is not an unknown position for parents or others dealing with the scheme.
Our youngest daughter is about to turn 20. She has Down Syndrome. She can speak a few words but not a full sentence.
She likes to say “sorry”. Sometimes it is because she has done something wrong, mostly it is because she thinks we have done something wrong, and that we should say sorry.
She needs a consistent routine. She used to catch a bus to her special school. Sometimes they changed the bus because it was getting serviced or being used elsewhere. She would strongly and loudly refuse to get on it – even though it was the same driver and carer on board. I would have to drive her. (Our car was safe; the new bus, not).
We really can’t leave her alone for too long. Two hours is about the maximum, and while we know she will happily lie on her bed watching her iPad, if anything were to go wrong, she would be helpless.
She still needs to be reminded to go to the toilet.
She cannot make her own meals.
She has a wicked sense of humour. Her favourite books are Bluey books and Meg and Mog. No matter how long she lives, and no matter how many articles I write, she will never read a word of them nor ever have any comprehension of what I do, but she still gets a thrill when she sees me on TV.
She, by any definition, has a permanent and significant disability (although once an NDIS officer just wanted to check if she still had Down Syndrome).
Like anyone in the system, we have had our challenges dealing with the NDIS.
Last year was her final year of school. For three months she transitioned to the new day programs she was to move to full-time this year.
These are programs where she does small tasks like recycling with Lids4Kids, or assists at a special café, does activities to learn how to interact with other adults, how to buy things from a shop, how to be more self-sufficient, how to, in short, live a life.
In September last year, we began the process of updating her NDIS plan for these new circumstances.
And we entered NDIS hell.
My wife spoke to the case officer, sent her quotes for the day programs at the two NDIS registered not-for-profit providers, and ended the email, “Please let me know if I need to do anything else.”
We waited.
In November, we emailed for an update and were told we needed some other information – such as her address and date of birth – which was fine, but a bit odd since presumably they had her file.
In December, we sent the case officer a revised quote. Twice. My wife rang and was told the plan had yet to be processed.
In February, we emailed again and also rang. We were told her case was pending but not to worry because when her current plan ran out at the end of the month it would just automatically roll over and be topped up if the funds ran out.
Because we had enough funds, we carried on. But then the funds ran out … and did not automatically top up.
We emailed again explaining the situation, but got no response.
Both of us work full-time. I rang during work hours but discovered I could no longer speak on my daughter’s behalf because now she was an adult I needed to re-register (even though I am her legal guardian and power of attorney).
Last week, my wife rang and was told our case officer would ring us the next day. They didn’t.
She rang again and was told to ring before 5pm.
She did and was finally told that actually no one had ever reviewed our daughter’s new plan. It had “fallen through the cracks”. Oddly though, the person was able to see our trail of emails and all the paperwork we had filed.
We were asked if our daughter really needed this program. Was it not possible for one of us to stay home from work instead? We also should fill in another change of plan forms (that we already did nine months ago).
We were told to wait, and that while we waited maybe we should take our daughter out of her programs because they might not be approved. Yes – for a girl who cannot cope with a different bus, and who needed three months accompanied by a personal carer she knew to become comfortable at her current situation.
Hell!
But here’s the thing – the program we are desperately trying to get approved is the very type that the health minister, Mark Butler, has singled out for warranting an arbitrary cut – say 25% (hell the Explanatory Memorandum gives another example of a 50% cut).
Few have spoken against the cuts. The Liberal Party loves them – and loves that it allows them to further gut the scheme should they ever return to government. Some of the independents have shown the humanity lacking in the ALP, LNP and One Nation.
Kate Cheney, for example, noted in her speech on the bill:
“this funding is not discretionary spending in any meaningful sense. For many participants, it’s what makes the difference between a full life and an isolated one. It funds the sporting activities, outdoor experiences and community engagement that allow people with disability to be members of their community, to build skills and independence and to experience the ordinary dignity of participation in public life.”
And so we live in NDIS hell – worried that our daughter’s plan will not be approved, and worried that even if it is, in a year’s time it could be cut by 25% or more.
All so that, as Mark Butler suggests, the NDIS can return to its original intent of “providing lifetime supports for Australians with permanent and significant disability”.
Cruel hell.
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Cruel and exhausting. Thank you for sharing your experience.
I hear stories where people have ended up in complete humiliating isolation as adults because they lack family and NDIS, including from my GP.
Family can do so much but when people become adults they also need to see other people and participate in broader life and the current reality is that help is needed to make that happen. Our society has not evolved in a way that naturally provides this kind of inclusion in big urban centres.
I worry the govt are going to determine “permanent and significant disability” as someone who can’t go to toilet or feed themselves - but for eg, those who can manage those things but are still limited from broader participation due to intellectual disability, or severe communication difficulties will be deemed “fine”.
This is not the test that the UN convention on the rights of people with disabilities set in terms of maximising human rights a fundamental freedoms.
My sister was severely disabled at age 2 - medical negligence. My parents were told they had to put her into full-time care. 4 hours drive from home. They were told to think of their other child. This was 1972. My parents had battles with the system over the years. I was protected from much of it. Social workers actually existed then so my mother had someone to talk to. My sister died in institutional care - medical negligence again.
When the NDIS was introduced I thought finally families would be recognised as a unit that needed a system working for them not against them.
Looks like we are back to a shitshow of leaving the most vulnerable in society on the fringes while pretending to care.
I'm sorry this happening. I really thought we would have matured as a society.