Senate Community Affairs Legislation Committee

PO Box 6100 Parliament House Canberra ACT 2600 Australia

Dear Senate Community Affairs Legislation Committee,

I am writing to share my concerns about the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024.

The NDIS is very important to me. I am worried about the following parts of the Bill:

Reasonable and Necessary Budgets Changing from ‘reasonable and necessary supports’ to ‘reasonable and necessary budgets’ will limit the supports people can get. People need support to live an ordinary life.
Narrower Definition of Supports The new definition of supports are too narrow. It will exclude important supports that people need to be part of the community and achieve their goals.
Increased Powers for the NDIA The NDIA would have more power to make people undergo assessments or provide information. If people do not comply, their plans could be suspended or revoked. This could be very hard for people with disability, especially during a crisis or if we have complex needs.
Restrictions on Self-Managing and Plan-Managing Funding The NDIA could stop people from self-managing or plan-managing their funding if they have made mistakes before. This goes against the principle of choice and control.

Overall, I am worried that this Bill moves away from the original vision of the NDIS. The NDIS is meant to give people with disability choice and control over their supports. This Bill is more focused on saving money than helping people with disability.

I think the Bill should be paused or stopped. There should be real co-design with people with disability. We need changes that truly meet the needs of people with disability.

I urge the Committee to recommend significant changes to this Bill or making other moves to save money. There must be thorough consultation with people with disability and our representative organisations.

The NDIS is too important to get wrong. We must get this right, with people with disability at the centre of the process.

Thank you for considering my submission.

The promise of the NDIS

“The NDIS currently provides tailored, individualised support to people living with substantial disability. Many residents rely on the NDIS to provide a fighting chance of accessing a pathway out. International policy trends and research have demonstrated that a combination of capacity building and housing solutions provided through individualised funding packages, are key to a life beyond the walls of PCC settings [3].” https://everyaustraliancounts.com.au/opinion/implications-of-the-ndis-amendment-bill-2024-for-some-of-australias-most-marginalised-people/

Problems: Independent Assessments to help provide funding packages.

There are some diagnoses for which there are no standardised assessment tools.
I am a participant on the NDIS, and my diagnosis is one of those diagnoses where there is no diagnostic tools (and no, I do not have an ASD diagnosis).
People with severe disabilities do not fit into boxes.
Any assessment tool would need to be evidence-based and verifyable.
The NDIA are not the orgnisation to be developing assessment tools, especially in circumstnces where:
the NDIA do not have an ethics committee
some of the people they are seeking to assess, have diagnoses where health professionals who specialise in those conditions, and wh are working on assessment tools, currently do not have anything suitable.
Currently there is no evidence-based tool to assess funding for all people regardless of disability. It doesn’t exist.
The idea that the NDIA would subject everyone to one assessment tool is unrealistic and out of touch.
The whole purpose of the NDIS was to have whole-person based approach to support and funding needs. This aspect of the proposed amendment bill flies in the face of underlying principles of the NDIS
This part of the proposal is several steps backwards for the disability community and Participants on the NDIS.

Problems: “The Bill … declares that participants can only access supports for the impairments identified at the point of access to the NDIS – not emerging or acquired disabilities, which are frequently experienced by people living in PCC.”

There are a percentage of people on the NDIS who have degenerative conditions. It is unrealistic and out of touch to think that impairments are going to stay the same after he point of access.
For anyone with a severe disability, It is unrealistic and out of touch to think that impairments are going to stay the same after the point of access to the scheme.
If things are working well as supports are in place, detail will be come clear about the impairments as time goes on;
If, as is the case for may of us, we contiue to struggle to access suitable and appropriate supports for our circumstances, needs, impairments, goals and presentation, then often impairments get worse over time with deterioration.
The NDIS and interaction with the NDIA specifically, is profoundly traumatising as an NDIS participant, especially where the NDIA continues to be adversarial and require participants and families to bargain from the NDIA’s opening position of “no” (even where AAT and High Court Decisions confirm that something can be funded, and is reasonable and necessary support as a result of that person’s impairments. Gaslighting, lying, poor communication , lack of respect for Participants is a common problem and experience from NDIA staff.
With truama comes deterioration.

The whole purpose of the NDIS was to have whole-person based approach to support and funding needs. This proposal flies in the face of the goals the NDIS that we as a disaility community fought so hard for.
This is several steps backwards for the disability community.

Problems: “The Bill would enable a new ‘classification’ system, classifying participants through yet-to-be disclosed criteria. People who live in PCC generally live with complex and overlapping disabilities, and many will not fit neatly into a ‘classification’ system” “https://everyaustraliancounts.com.au/opinion/implications-of-the-ndis-amendment-bill- 2024-for-some-of-australias-most-marginalised-people/

People with severe experiences of impairments and disability are already outliers. They already do not fit into boxes. People with profound disaiblities do not need another system in their life in which they are again tried to be forced into boxes that are unsuitable for their needs, circumstances, goals and impairments.
The whole purpose of the NDIS was to have whole-person based approach to support and funding needs. This aspect of the proposed amendment bill flies in the face of underlying principles of the NDIS
This part of the proposal is several steps backwards for the disability community and Participants on the NDIS.
The NDIA needs significantly more oversight rather than less. Any bill that results in less scrutiny and due process by the NDIA needs to be strenuously resisted.

Problems: Lack of appeal processes

Any aspect of a scheme where there is not an ability for decisions to be reviewed and appealed has the potential of being abusive.
At least currently, there is the ability to ask for review, via S48, S100, and then at the AAT.
It is vital for the safety and wellbeing of our most vulnerable that the NDIA’s conduct and decision making be closely scrutinised. Frankly, internal decisions by the NDIA and Services Australia should be scrutinised at a higher level than what is occurring right now, because how Participant’s are being treated is appalling.
The NDIS Amendment Bill is a step in the wrong direction, and is going to make existing problems significantly worse.
This part of the proposal is several steps backwards for the disability community and Participants on the NDIS.
These steps will open the door to Robodebt – the NDIS Edition, which we are already starting to see as Participants in the NDIS.
Any legislative amendment for the NDIS that proposes this needs to be strenuously opposed for the wellbeing of Participants, but also for the wellbeing of our economy, society, and citizens overall.

Problems: the Automatic Topup Lie

There has been a lot of talk in the media recently about Automatic Top-ups of NDIS plans.
As an NDIS participant, they do not exist.
The only way to access additional funds if your plan runs out f founding, is if your circumstances change via an S48 review.
I will also say that, most people’s plans are significantly underfunded. So this idea that the NDIS Participant’s plans are well funded for what people need (and what people’s allied health and medical teams have identified is criticial for those Participants) is a lie. It is uncommon for someone to receive funding at the level of supports that is less than the bare minimum.
All reviews need to be processed and considered by a Delegate of the NDIA. There is no automatic top-up.

Problems: the requirement that someone respond within 90 days – unfair and unreasonable

The Amendment that allows for “NDIA CEO can revoke participant status if the participant simply does not respond to correspondence from, or provide requested information to, the NDIA within a 90-day timeframe. This amendment could significantly impact PCC residents, as many have difficulty self-advocating and navigating complex systems. Many do not have access to family or a formal or informal advocate and have limited or no access to their own medical records, or communication methods including phone, or email.” ”https://everyaustraliancounts.com.au/opinion/implications-of-the-ndis-amendment-bill-2024-for-some-of-australias-most-marginalised-people/
This is another thing that is out of step with the reality that the NDIA’s clients are people with profound disability, some of whom struggle to access appropriate supports.
Consistently the NDIA do not follow Participant’s communication plans. So I predict if this goes through, situations where the NDIA fail to communicate per a disabled person’s needs around accessibility, and contact them in a way that is inaccessible, and then use that to boot people off the Scheme.
Why should a Participant have to reply within 90 days, where NDIA staff do not have to meet the same standards.
The NDIA’s obligated timeframes for reply have been unable to be met for a long time, and as far as I’m aware, there is no commitment from the NDIA or the Govrnment to get those timeframes back on track.
The approach is inconsistent with a Scheme that is purporting to be there to help people access reasonable and necessary supports to live an ordinary life, and is tone deaf to the challenges that people on the NDIS experience daily.
Any legislative amendment for the NDIS that proposes this needs to be strenuously opposed for the wellbeing of Participants and sustainability of the scheme.
Circumstances where someone might be not answering communications need to be approached with compassion and with assistance in mind. Circumstances where someone is not responding, could be for many reasons, including because someone is at risk because their funding is insufficient. Cutting people off when they are struggling is heinous. Anyone who supports such actions should be ashamed of themselves.

Increased flexibility: Another lie

Don’t believe that there is going to be increased flexibility as a result of the changes to the NDIS bill.
No Legislative amendment is necessary for increased flexibility.
The NDIS is controlling how participants can access funding through the NDIS Price Guide, which already does not allow for Participants to use their funds for reasonable and necessary supports to assist in achieving goals, or in line with the current NDIS Act.
The NDIS already militantly seeks to impose restrictions over and above what is possible to be claimed through the NDIS Act.
The NDIA do not need more tools to restrict funding or restrict accessing certain supports. The NDIA already have what they need.
Authoritarian approaches for people with very diverse circumstances and support needs and needs for support delivery are not helpful, and will result in people not being able to access critical and life saving supports.
Any legislative amendment for the NDIS that proposes this needs to be strenuously opposed for the wellbeing of Participants, but also for the wellbeing of our economy.

Failures to increase accountability and liability for impacts of funding decisions by NDIA staff

There are already numerous problems because there is no accountability or criminal responsibility for risks to health and safety as a result of insufficient and inappropriate decisions by NDIA staff.
Decisions of NDIS delegates are directly linked to the health and safety of NDIS

participants.
• The Public Servants making decisions for funding on critical supports for NDIS Participants are directly responsible for the effects of that. Eg. if someone dies because they didn’t have funding to be supervised 24/7 and they die because someone was not on hand to keep them safe NDIS needs to be able to held accountable for those decisions.
• Until we have criminal liability for everyone involved in support decisions, then NDIS delegates will not be able to act in the best interests of Participants, and internally advocate for better systems and better conditions for Participants.
• Any legislative amendment for the NDIS that fails to propose this needs to be strenuously opposed for the wellbeing of Participants, but also for the wellbeing of our society.

Funding decisions based on diagnosis rather than impairment is a step in the wrong direction

• Diagnosis is not sufficient to describe someones life or someones disability support needs.
• The same bucket of funding for everyone with the same diagnosis is problematic because not everyone has the same circumstances, training, informal supports.
• There is a range in every diagnosis. For some diagnoses no presentation is the same. It is critical that support solutions are individually assessed on individual needs and goals.
• The approach is inconsistent with a Scheme that is purporting to be there to help people access reasonable and necessary supports to live an ordinary life, and is tone deaf to the challenges that people on the NDIS experience daily.
• Any legislative amendment for the NDIS that proposes this needs to be strenously opposed for the wellbeing of Participants, but also for the wellbeing of our economy.

Consider the effect of stress on peoples health and wellbeing

• As far as I can see, there have been no published statistics on Participants misspending funds.
• As a Participant, I would guess that the misuse of funding, by Participants, is actually very low.
• A punitive approach towards Participants, is the wrong way to go. There needs to be a process of education and engagement and willingness to help Participants, rather than fear of receiving a bill in the mail, that a Participant cannot appeal, and which could result in Bankruptcy.
The effect of stress on my disability is deterioration. The NDIA needs to start being realistic and honest at the severe amount of stress that it’s approach (which is not compliant with current legislation), has on the lives of Participants and their families.
Increasing stress and financial pressure on Participants and their families is going to result in worse outcomes for everyone, deterioration for Participants, increased support needs as a result of higher points of crisis, and increased support costs.
This is amemdent bill and the Approach of the government is wrong in every way

As an NDIS Participant, what I need:

• I need help from someone whose approach is “How Can I Help”, who is willing and capable (with appropriate qualification and professional training and professional memberships) of working with me and my providers to ensure I have funding to access the funding that I need.
• I need to not experience daily nightmares as a result of having to deal with NDIA staff, and their failures to communicate clearly. The trust is gone.
•I need for NDIA staff to be required by law, and held criminally liable for harm to me. They need more accountability, not less accountability.
•I need the NDIA to be more competent at making accessibility a critical point to be addressed through every business decision in Australia.
•I need the NDIA’s approach not to want me to disengage from them.

I need the NDIA ’s approach t obe to help, and to not cause harm. This is not what the NDIA or Services Australia is. Complaints about staff go no where. There is no humanity in the portion of the Public Service who is there to support the most vulnerable in our society.
I need to be able to access the same services as anyone else. Currently I cannot even access urgent care, as the hospitals are unsafe and I’m told do not even have a disability liaison, or system for ensuring the safety of people with profound disabilities. This week my GP begged me to go to Urgent care, and we had to have the conversation where we had to discuss and consider my safety in attending. Ultimately we determined that I would be less safe attending urgent care.
At work, I need to be able to make a claim to the Fair Work Commission, and be supported in that process, as opposed to being told that the only accessibility features available to people are the lifts and ramps in the building.
In accessing supports, I need to be dealing only with people who legitimately care, and have the approach of “what can I do to help you” rather than coming at me with “no”,
In accessing supports, I need to be able to deal with companies who are not obligated to their shareholders to turn a profit at any cost - ie. at cost to me.
In accessing supports, I need to pay the same amount that other people in the community pay.
In accessing supports, I need to be able to access a range of supports that are tailored to me, and my circumstances, I need an NDIA who clearly communicates reporting requirements, with templates, and examples to show how to fill out forms, and feedback if required. Rather than, what I have experienced being an NDIA Delegate telling me, “the allied health should know what we need”, and then rejecting support requests, even in crisis, whilst simultaneously refusing to provide clear and actionable feedback so we can determine what gaps exist in the NDIA staff member’s understanding, and why they disagree with 3 medical specialists, and general physician, an OT, and a physio about a single aspect of my support needs.
In accessing supports, I need a system that is less adversarial. The conversation needs to change.

I submit that the Senate needs to be asking why the NDIA has not been following existing legislation, and how many issues we are dealing with, because of ongoing poor implementation by the NDIA. I submit that the Senate needs to be considering the wellbeing of Participants and their families at the core of their assessment. I submit in considering these things, the Senate needs to be looking at matters at AAT, and how may of those claims are actually rejected, the cost of those items vs the cost of having matters before the AAT. I submit that he Senate needs to investigate the PACE system. It doesn’t work. It’s horrible to interact with, it isn’t getting better, and there is a lot of news about bribes from the people holding the tender for the software. When asked at Senate Estimates recently, the NDIA were unable to provide percentages of bad spending by Participants.

These are costs of NDIA’s negligence. These are the costs that the Government should be targeting. The Approach of the NDIA under Services Australia is a massive problem, and the basis of a lot of the problems with costs The current bill proposal will do nothing to address the core of the rot, which has nothing to do with NDIS Participants. The current bill will not get the NDS back on track.

I submit that this Amendment Bill is an attempt to scapegoat participants and hold them

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responsible for actions of previous governments, the NDIA in their decisions around the price guide, and failure to fund people’s plans at the rates they need funding, and providers. The government needs to remember that having a profound disability doesn’t make a person less of a person. We still pay taxes. We still vote. We are still people, people who need your care and compassion.

The NDIS is an opportunity for our society and culture to reconnect with our humanity. The Approach of the Government through this bill is going to result in the opposite of what is needed.

These are the top reasons why we must stop the government from passing this Bill:

The NDIA can demand any information from you and kick you off if you don’t give it to them in 90 days.
The NDIA can decide your main disability without telling you, and you can’t dispute it.
The NDIA will only fund supports based on what they think your main disability is, even if you disagree.
The NDIA can make you pay back money if they don’t like how you spent your funding - You could get in trouble and have to pay back money for what your support coordinator does, even if you didn’t agree to it.
The NDIA can force you to use supports that don’t work for you or aren’t available where you live.
The NDIA can make you use providers that treated you badly and make you feel unsafe.|7. The NDIA can make you use providers that go against your identity, culture, religion, or sexuality, even if it’s discrimination.
The NDIA wants to assess your funding without explaining how and won’t promise to listen to disabled people later.
The NDIA will have confusing lists of what supports you can and can’t get, and can make you pay back money if they think you used a wrong support.
The NDIA can demand all your private medical information without saying why, and you can’t say no.
You could get punished and have to pay back money because of a provider’s mistake that wasn’t your fault.
The NDIA can take away your control over supports if they disagree with how you used your funding.
Hard times in your life could get you kicked off the NDIS without you realising it, leaving you with no supports and bills to pay.
The NDIA can change how you manage your funding. From Self-Managed or Plan-Managed to Agency-Managed because you didn’t spend your funds exactly how they thought you should.

What is necessary:

Equal and fair to access regardless of what category your disability falls into. Your ability to navigate through bureaucracy should not determine your access to supports or ability to stay on the scheme.
Customisable on a case by case basis. There is no ‘one size fits all’ when it comes to disability. Supports should be based on individual needs and goals.
Putting disabled people at the centre of decision making. Participants must always have the right to appeal decisions made about their supports and drive any changes made to our NDIS. Agency powers should never eclipse the rights of disabled people.
The ability to appeal is at the core of our democracy. Any solution that does not allow appeal of a decision by a public servant including those at the NDIA is a risk to the health

and safety of our disability community.

These changes are highly problematic.

As an NDIS paiiparticipant I am extremely concerned.

The amendments proposed to the NDIS legislation will not improve the user experience for NDIS Paiiparticipants, and represents a profound safety issue for the hundreds of thousands of people on the NDIS.

The NDIS is an oppo1iunity to put accessibility at the forefront of eve1y business decision in Australia. Accessibility doesn’t just help people who need additional accessibility assistance. Accessibility assists eve1yone. And by having to think about accessibility, we are thinking about how we are suppo1i ing each other (rather prioritising number one, and the all powerful dollai-).

By thinking about each other, we can improve the lives of all Australians.

The path to better accessibility cannot be poorer accessibility for our most vulnerable. The entire approach of this Amendment bill is poorly designed and poorly implemented.

We should not be rnshing to push through shoddy legislative changes, so that Labour can go to the next election with a “win” under its belt.

I am, as an NDIS Paiiparticipant, ve1y concerned. I ah-eady have nightmai·es about the NDIA reaching out and asking me to pay back funding. I ah-eady have nightmai·es about whether I will be reimbursed for disability suppo1i items that have previously been approved.

Please, do not pass this bill.

Please. I am ve1y concerned, and this is the wrong way to go. It is not too late to reject this bill. Please reject this bill.

Yours sincerely, An NDIS Pa1iparticipant, -