Submission on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Dear Committee,
I am an NDIS participant, as well as a Carer of NDIS participants, and I want to respond to the proposed changes to the NDIS Bill.
Firstly, I want to thank the Senate Committee for extending the time to properly consider the new NDIS Bill. This legislation must not be rushed through without proper co-design with people with disability.
Thank you for standing up to Mr Shorten’s increasing hostility to both the Senate and most importantly to people with disability. Please don’t allow yourselves to be pressured into accepting legislation that will be detrimental to those who depend on the NDIS. We have increasingly become just numbers in the budget, a burden, or it is being implied we are all fraudulent or greedy. There has been an escalating push by the government to turn this into an ‘us’ and ‘them’ situation. Please don’t let that happen. We are people. All it takes is a moment in time and anyone’s life can change, you or those you love may need the NDIS. Please consider how important it would be for you to be able to live with dignity, to live “an ordinary life”, and to have choice and control over your supports.
Amendments While I would like to see this Bill scrapped and new legislation created by properly co-designing it with people with disability, if this is not to happen, then I hope that there will be significant amendments made before it is passed. Although to be clear, I do not think it is possible to eradicate the harm that will be caused by this legislation by amendments alone.
This Bill is a seismic shift in the whole purpose and intent of the NDIS. Please understand how dangerous this legislation is. The submissions already made to the Senate Inquiry by respected people such as Dr Darren O’Donovan and Rosemary Kayess, the Disability Discrimination Commissioner for the Australian Human Rights Commission, the DROs, and the many participants, should be listened to and taken seriously. And I hope that you will also listen and take seriously this second intake of submissions.
While it is good to see that the government has made some amendments to the Bill, some do not go far enough, and some very significant issues haven’t been addressed at all. Many of these will be covered at length by others, but I will include some that I think are important, and that I have not seen mentioned by many people.
Summary Of Amendments To The Bill That I Would Like To See Considered:
1) Definitions of Disability and Impairment
2) Consideration of the Whole Person
3) Carefully defined limits to the power of the NDIA and CEO to request information from participants
Definitions Of Disability And Impairment
There should be clear definitions of these terms. This could be implicitly, or perhaps a statement that they are to align with the definitions used by the WHO (in case those are ever updated).
At present the NDI uses Diagnosis or Condition as their default way of making Access and Funding decisions although they refer to that as being the ‘impairment’ or the ‘disability’. Or
they refer to ‘disabilities’, which is not used in the Act at all. In practice they use the terms interchangeably, at will, to mean whatever they want it to at the time.
This means that while they say the new Bill will remove primary and secondary disability, they then go on to say they will only cover “impairments” that meet Access criteria. What does that even mean? If one diagnosis or condition results in multiple impairments, are they going to pick and choose which of those they think should be covered now? What if more than one diagnosis contributes to the same impairment? Aren’t they just imposing the same limitation but changing the terminology how is this any better? I could even end up being much worse.
Knowing what disability is would seem to me to be pretty important for those working at let alone in charge of the NDIA or the Q&S Commission. The acting Q&S commissioner Mr Phelan was asked by Senator Steele-John in the Senate Estimates hearings on 3 June 2024 (page 118 Hansard transcript) to explain the social model of disability, which he couldn’t do. He was then asked the following:
Senator STEELE-JOHN: Alright. Let’s just do the most basic one then. What is a disabled person?
Mr Phelan: I don’t have a definition of that, Senator.
That’s not good enough.
Consideration Of The Whole Person
Following on from point one, the whole person needs to be considered and supported. There will be many people making submissions on this point so I will not go into this further.
Carefully Defined Limits To The Power Of The NDIA And CEO To Request Information From Participants
People have focused on the problems with the NDIA being able to demand that a participant have an assessment or get medical information within 90 days and the threat to have access revoked if this is not done. These concerns are very valid.
But I see a much wider problem with this. There is no limitation to the information that can be demanded. This isn’t just to get a report but could be your whole medical history, not just what is relevant to your application or plan. This is not something they just could do, but currently already do. So assurances that this won’t happen without it being specified in the legislation mean nothing.
At the moment they do this to participants at the AAT. There have been several examples of this in the media in the past year. There are reports of medical records containing sexual assault being subpoenaed. They think this is reasonable. Giving them the power to hold this over people, not just at the AAT when their external top-tier law firms are going against vulnerable people, but now at any time they decide they might want to revoke access, could potentially lead to a horrendous abuse of power. I haven’t had this happen, but I have been scared of it for a long time now, and it does affect how open I can be with my care team (and I mean those in mainstream systems, not NDIS-funded supports).
They could compel you to provide the most personal information about yourself to strangers to judge if you are “worthy” of support. Will the NDIA choose to focus on the report from that
- misogynistic or ableist doctor who treated you with contempt 10 years ago, or the clinician you currently work with who understands your disability and who you trust?
I’m sure many will say that if you want help from the government you need to be prepared to wear this invasion of privacy. Or that it would only be a problem if you have something to hide. But please think of your own medical records. Every doctor you have seen, every consultation, every medication you have been on, or every test you have had. Do you have anything disgraceful in your records, that infection you had once, the time you were reckless and injured yourself, your Viagra prescription, or things that you prefer to remain private, a miscarriage or infertility, what about trauma, assault or abuse?
Do you even know what is in your record? I have gone through some of mine and my family’s recently, and they are littered with mistakes. I have medications listed that I have never taken, kids were listed as being born by caesarean that weren’t, problems that were treated as insignificant or “all in my head”, that many years later were correctly diagnosed as auto-immune disease. An immunologist I saw for an allergy had written in the letter to the GP that I have a diagnosis of COPD, but I do not. I only saw it because I requested a copy be sent to me, often doctors don’t do that. I was able to get them to correct it, but there are so many others that I haven’t. Who will they believe? The legislation will not give us an avenue to appeal this. Even if it does, that would be a long and difficult fight, and the process itself could be used to bully people into giving up their supports rather than disclosing information. Or worse.
There needs to be a very clear limit on what can be requested. I would like to see it be limited to information requested from current providers only (unless the participant wants to contact older providers for relevant information or provide older reports, diagnosis letters etc). It should also be limited to assessments or reports, or even better specific questions to guide the response, not their entire record with that provider. There is no need for more than that. Anything more is open to an abuse of power.
The Current Pressure To Pass This Legislation Quickly
The Spotlight on Fraud The rush to pass the legislation is being pushed along by sensationalist claims, like ‘look over there, they are buying drugs, we have to fix this quickly’. But the legislation doesn’t change this at all. Because drug dealing inside or outside the NDIS was, is, and always will be, illegal, and we have a police force and courts for that. We don’t need “don’t buy cocaine” in our list of dis/approved supports. The other things Mr Shorten often lists, like gambling and alcohol, are already not allowed as NDIS supports. These are red herrings to win support for the changes. But if you agree to legislate that lists of allowed or disallowed supports can be later revealed by the Rules, which have much less oversight, these won’t be the only things on the list, and many things that people need will be excluded.
The talk of fraud and misuse of funds is all out of the playbook of The Redbridge Reports, commissioned by the NDIA last year for around $400,000, of how to produce “qualified support for unpalatable reforms” like 1:3 SIL, and kicking off autistic individuals, and segregating and pushing psychosocial participants to a different pathway. It’s spin, pure and simple.
Don’t fall for it. See the legislation for what it is. Evaluate the legislation as written, versus what they say they intend. If it doesn’t match up, then there is a problem that needs to be fixed.
Plan Inflation
There are two types of plan inflation. Intra-plan inflation, which is what Mr Shorten mostly talks about, and inter-plan inflation. I want to make this point very, very clear:
There is no such thing as an "auto top-up"
I, and many others in the disability community, am angry and upset this is being perpetuated and no one is fact-checking it. It is straight out a lie, that has been spread to every media outlet and corner of the internet. This needs to stop. Perhaps there should be another amendment to the Bill, that the Minister and NDIA should not defame or incite mistrust or hatred of participants or the wider disability community.
If you want to know what the government intends to do by changing the legislation, you can get an idea by looking at the changes they have been making before the Bill even passes.
The NDIA has been, since last October when PACE came in, conducting “check-in” phone calls. These are supposedly just to see how a plan is going. They do this unexpectedly and unannounced. It is cold calling, people are scared to answer their phones now. When Mr Shorten quoted how many participants are “uncontactable” and that this is unacceptable and used that as an excuse to give the CEO extraordinary powers to compel information and threaten to suspend supports or kick people off the scheme altogether if they don’t comply in 90 days, my gut feeling is that people being “uncontactable” is from fear. They also insist on phoning those who have their preference for communication as email or written, not phone.
On these cold call “check-ins”, they assure people these are not plan reviews even if asked directly. People are often not given the chance to get reports in about their needs (which can take weeks or longer to organise), or given the option of having anyone to support them on the call. We are talking about a vulnerable group of people, some who require this support.
Did you know it is in the legislation that a plan MUST be done WITH the participant? If a participant does not know it is a plan meeting, how can people advocate for their needs adequately? If they don’t know it’s a plan meeting, are they able to participate or consent to this at all? How is this allowed to continue?
These “check-ins” can be anywhere within the time frame of their plan, so months or years before they are due for a review. Mr Shorten and the NDIA at the Senate Hearings say it is participants asking for top-ups that is causing back-logs. Then why do they have so much time for these unscheduled, unwanted “check-in” plans?
Imagine you have a plan and work out what supports you can utilise for the next 1,2 or 3 years. Getting this plan has potentially been exhausting and difficult. But 2 weeks after one of these phone calls some of these people magically get a new plan, which they were assured wasn’t going to happen, with their funding immediately slashed. They have 3 choices here. One is to try and live off the reduced support, which is sometimes not possible. Another is an S100, a review of a reviewable decision. An internal review by the NDIA, which is largely a tick and flick no. After your request is rejected, you can start the lengthy, and traumatising path to the AAT (which they are about to drastically cut access to). The other is a Change of Circumstances. You get your reports together (that you would have done if you had actually been told you had a planning meeting), and submit a S48. Yes, you are asking for more funding, because it won’t last you for the length of the time, because they cut most of your vital supports doing an illegal (not a) plan
meeting. There is nothing “auto” about an S48. You get evidence, apply, they can accept, deny, or they can use it as an excuse to review your whole plan and cut the funding you do have. This is at the moment taking many months. Again, people are scared of this. This experience for some is incredibly traumatic when essential supports that they need to live, let alone live “an ordinary life” are suddenly and unexpectedly cut. I have not yet had one, but I am afraid I will get one, and trying to prepare for one as best I can.
I have had to go to the AAT previously, and it was incredibly difficult and distressing, even if the outcome was very positive. But that the right to appeal some decisions will not be guaranteed in the new legislation is not acceptable. The right to reviews and appeals need to be clearly defined and stated.
Thank you for your due diligence on this vital legislation. It is important to so many, that it is sound legislation.