NDIA Accountability Project

Autistic child’s NDIS support and parental care challenges

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To those concerned,

I would like to make a submission on this bill which I find very frightening and upsetting.

Before I start, I would like to take attention away from the CEO and Minister touting the needs to keep NDIS sustainable and instead bring your attention to the fact it already is and more. Please see the article in The Canberra Times: Cuts to NDIS cuts will harm Australian economy: National Disability Services report.

I will add the link at the end of this document but here’s a quote:

“In a report to be published on Thursday, progressive think tank Per Capita examined the cost and benefits of the NDIS and scrutinised the government’s controversial cost projections. The analysis found the scheme was a major economic multiplier, with every dollar of investment delivering a return of $2.25 as a result of job creation and spending on small local businesses. On those numbers, the scheme would have delivered a $52 billion economic boost to the nation in the past financial year.”

I am deeply concerned at the tactics being used which I find evident throughout this bill which is very vague whilst at the same time giving enormous power to both the CEO and the Minister. It’s also very concerning that this amended bill did not include amended rules when you consider that throughout this bill - particularly when there is a power imbalance, there is also constant referring to the rules, rather than legislation. Considering rules can be changed at any time and does not need to be debated in parliament like legislation, makes this very dodgy in my view.

One would have hoped that after the independent assessment fiasco that both the CEO and Minister would have shown much more substance to their words around co-design with people with disabilities and their families. However, it seems that they are simply continuing to power ahead, forcing these changes any way that they can.

“Actions Speak Louder Than Words”

I cannot in good faith trust this government and NDIA/NDIS, I am sickened by their seemingly disgust for those with disabilities. I cannot fathom how a bill written like this could be allowed to pass.

For background, I am a mother with ME/CFS, I am not on any form of mainstream support or NDIS. My 16 yo is Autistic with a Pathological Demand Avoidance profile and at times, suicide

I need to homeschool due to not coping with school environment due to complex factors of PDA and disability. Dad, who supports us, has incurable blood cancer and works full time.

I have to fight NDIS currently because they deem parental responsibility, I am unable to keep up, I can feel myself declining in functioning. I cannot be all people to my teenager who will be 17 in less than 6 months and deserves to build independence from us.

This year could’ve been a good year to increase support and functioning for my 16yo whilst our state was stable with managing Covid but NDIS have not supported this opportunity and I feel chances slipping away with our state opening up this month and we will once again be back where we started due to the distress of Covid.

I have not been able to rely on other mainstream support as they do not cut the mustard with disability. For example, take suicide ideation, our one and only mental health unit for children in SA only has 12 beds. Every time we go there, we are turned away. To be honest, I don’t feel they would know how to manage the disability and so they are probably correct when they say that they would only cause trauma.

Whilst I fight this current plan I am concerned with future plans being even more bleak. You only need to spend a short amount of time in online disability groups to read about how barbaric NDIS are right now, not only are they cutting plans by large amounts but some PWD are reporting getting new plans without any contact during the S100 review.

So here are my concerns:

  • Firstly, Too Many Rules: I just want to express that I believe there are way too many rules and not enough legislation around important powers and rights of those with disabilities. We need all of the important bits legislated so as to protect those with disabilities and keep both the CEO and Government accountable and honest. Please do not allow this to go unchecked because as it is currently written it is open to abuse and they show time again that they cannot be trusted on blind faith.

  • In Sections 47A and 48 the CEO is given substantial powers on variations of participant plans, to the point where the CEO can initiate a plan variation without consent. I’m all for a small amount of power that allows for a plan variation at the participants request particularly when it’s to fix mistakes.

It’s important this is able to be done without needing to go through a review or reassessment. This will free up so much time and stress for both participants and staff.

But as it stands the CEO can deny the request for a variation and instead decide to do a reassessment to cut support from the participants’ plan or perhaps even to kick them off NDIS.

What’s even more frightening is the powers actually allow the CEO to reassess a participants plan after they have been through the process of AAT therefore undoing the changes decided on at the tribunal.

I hope you can see the potential for abuse and intimidation here towards people with disabilities?

Please ensure that this power for variations and reassessments can only be used at the participants request and only done with their consent, collaboration and the final draft of the variation to be approved by the participant/nominee. The CEO should not be able to initiate this, let alone without consent. Imagine waking up one day, logging in to the portal to discover you’re out of funds to pay your supports because your plan was changed without your knowledge? Or that your wheelchair that was recommended and quoted for by your occupational therapists has been changed to a cheaper model that may not even be suitable? Just because the CEO said so?

This is disgraceful that they have even written this!

3: Becoming a Participant. I’m concerned about the vagueness of what is written and how that may be interpreted by the CEO and delegates. I feel this could easily be abused if it’s not defined more in the legislation.

Take my mother for instance, she was denied access, her shoulders are bone on bone and she also has problems with her neck and hands. In the health system she just keeps being put on waiting list after waiting list, this has been going for several years now. It’s been really sad to watch my very independant and stoic mum lose functions. She has to carry around a ruler to try to pull up her pants because she doesn’t have the mobility. She’s now on yet another waiting list of who knows how long, to have an operation on her first shoulder that if successful cannot cure but may give some functioning back. How that goes will determine whether to do the next shoulder and then eventually sometime in hopefully her lifetime they will then be able to look at her neck and then her hands.

But as it stands now she has been told by the surgeon that she needs intensive physio to even get enough mobility to even be able to rotate her shoulder to operate. So without that, cannot operate. Of course that’s pretty hard to do on the disability pension with 5 sessions of Medicare funded physio per calendar year. To top that off, she is also at risk of death to even have an operation so just the decision to do it is massive.

I’m just not sure how it could be decided that she does not qualify, whilst it’s vaguely possible that some functioning may be improved if all the stars are aligned and the magical wish fairy comes to visit, she is still going to have a physical disability and her functioning is going to continue to decline in the meantime.

There was mention of fluctuating functioning for psychosocial disabilities but there are other disabilities that need to be included. I’m concerned that this could be used to deny those that are not psychosocial.

Also what about disabilities like ME/CFS that has no proper evidence based treatment or medication other then pacing ourselves?

I think legislation and rules around these need to be defined more with the protection and rights of those with disabilities in mind. When you read the rules on becoming a participant please keep my mum in mind and what rights you think she should have.

4: Payment of Supports: There is some concern that those of us that self manage will be forced to change the way we manage a plan. I would like it to be legislated that we can continue to self-manage the way we currently are and use the providers we are currently able to use. Please do not allow them to take away our choice and control around this.

That brings me to another concern in regards to paying funds in instalments, this is very insulting but also again reduces choice and control. Supports are not always linear, they can fluctuate for various reasons.

I am also concerned that this may go further such as what is happening in the welfare system with the indue card which I think is disgusting. If it’s all within the rules then these rights can be denied at any time in the future without parliamentary debate.

The ability to self manage can be very empowering and allows the participant to be able to keep watch for mistakes that occur and keep providers accountable as well as ensure that invoices are paid on time. It also provides more choice and control in choosing supports and allowing the ability to save funds. No other management does this better than self management - with agency management being the most restrictive and also the most open to fraud. Self management is good for NDIS and needs to be protected and supported.

I do not trust this government or CEO. Please protect us.

5: Reasons for Decisions: Please ensure that it is legislated that we will automatically receive a document outlining their reasoning each time a decision is made. We shouldn’t have to go through a process of requesting this, it should always happen for ALL decisions. This ensures all participants/nominees are aware, not just those that have more awareness of their rights. It should also be accessible and in plain English.

Thank you for reading,

Links:

The Canberra Times: NDIS Cuts Would Harm Australian Economy Report.