@@Attn. Legislative Affairs Committee Cc Emma McBride Cc Kate Washington Date: 06/05/2024 Dear Legislative Affairs Committee, I am writing to you to express my concern about planned reforms to the National Disability Insurance Scheme (NDIS), as articulated in The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. I am a proud disabled man with over 15 years of experience in advocacy, I ask for your support in making sure the proposed reforms do not pass into law. These reforms pose many risks to people with disability in Australia. Changes to the NDIS Act, for example, that amend or remove government responsibility to provide access to reasonable and necessary disability supports, Co-Design: The Proposed bill heavily reflects the recommendations of the review, but one big thing is missing: Co-design! Everyone has been talking about the importance of it. Still, without it being mentioned in the law, there is no obligation for this government or any future governments to include disabled people in creating the new rules. If we are going to have an NDIS that considers group living, what is in and out, and who funds what then disabled people must have a seat at the table and not just so we make sure it benefits them but to deliver the outcomes that disabled people, Governments, taxpayers expect. In the Explanatory Memorandum it states “NDIS rules made for the purposes of proposed new paragraphs 10(b) and 10(c) will be Category A rules requiring the unanimous agreement of all States and Territories before they can be made (see item 115). As an interim measure, until new rules are made under paragraphs 10(b) and/or (c), APTOS will be incorporated to determine what is and is not an NDIS support (see item 124). Reliance on the APTOS is a transitional measure that will only be in place until4 new NDIS rules can be made. These rules will be developed with States and Territories as a priority.” A quick amendment to “These rules will be co-designed with States and Territories and people with disabilities as a priority” would cement disabled voices. Mandatory Registration of workers and providers:

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I believe any restrictions on the current self-management arrangements are unacceptable. Choice and control is a principle that has worked well for many disabled people long before the NDIS was created and continues to produce unimaginable benefits for disabled people, taxpayers and society.

Large registered providers have sexually and financially abused me. For example, my wife and I invited some of our support team as guests to our wedding. We clarified that this wasn’t a need for paid support but as guests at a wedding. Every support worker, apart from the registered provider, understood. Devastatingly, a week later, we received an invoice for 8 hours from that registered provider. He called and spoke abusively to my wife. Demanding we “approve the F$%king shift,” That support worker sent us a threatening letter with the registered provider’s letterhead. My wife and I reported it and were told by the provider that it wasn’t right that we spoke to him directly, even though he came to us first. We had sought legal advice, which left us out of pocket. As newlyweds, it wasn’t something we wanted to spoil our high from our wedding, not to mention the financial abuse of disabled people.

An experience of sexual abuse was on my first ever day of work. I was getting out of the shower, and the registered support worker sexually assaulted me while I was hanging in my hoist. This assault left me feeling hurt, confused and disempowered as I didn’t have a say in the training, hiring or firing of the support worker.

A good news story about my current support system is that late last year, the batteries in my electric wheelchair died. Any wheelchair user will tell you that you don’t get much warning, maybe a day or two before they won’t charge or stay charged. I contacted a registered repair company I knew would know the batteries I needed, but they had no stock, so I had to order them. The cost me close to $1100, that was before installation. A few hours passed, and I was worried. My support worker came that night to give me a hand into bed. I told her my issue. She is a bit of a tradie and knows her way around the basics of my chair. Together, we looked online at what local battery companies had and found a place that had THE LAST TWO BATTERIES! Being local, my support worker knows everyone and naturally had the shop owner’s number. It was after hours, but she linked me up with him since she knew him, and he could hold the batteries for me. They cost $400, a big difference from $1100! I asked my tradie support worker and another very handy support worker to put me and my hoist in the car and come down with me to the local battery shop.

In the back of the shop, my all-female pit crew got to work, and I sat on the floor with my sling around me. They saved the day. I was back on my wheels for the cost and time of 2 hours and roughly $600.

Without access to my bespoke, non-NDIS registered providers, this wouldn’t be the case, as red tape, costs, and time would all blowout. I couldn’t think what my life would have been if I had to spend three months in bed with the limited support hours I had. How would we pay rent? How would I be the husband my wife and I expect me to be?

If participants are agency-managed

A registered provider can access a participant’s portal to claim whatever amount without the participant’s approval, let alone see what has been claimed. Suppose you are on the new PACE system. In that case, payments get approved if the participant doesn’t reject it in 7 days, and this happens regularly, with participants or nominees only given a receipt..sometimes.

The participants have complete control when plan-managed, which won’t exist if the recommendations are adopted or self-managed. They are invoiced directly, and they decide if that invoice is correct or not. Participants can see patterns of invoices, support budgets in real time, and make fiscal assumptions for the plan’s duration. It’s also a hell of a lot cheaper for the NDIS!

Regarding safety, plan-managed and self-managed participants are very good at having systems in place. Why would they pay for these “Shonks” the minister keeps talking about? Disabled people can spot dodgy a mile away; we’ve had a lifetime of it!

Suppose these safeguards are no longer available and the only real option is agency-managed, in an ecosystem where every provider knows you are an NDIS cash cow. In that case, the only people overseeing it are the understaffed, time-poor NDIA, or worse, a robotic computer system that doesn’t consider participants’ lived experience and expertise. There are going to be far more cases of financial and horrific physical and physiological abuse caused by one service type and by the systems built for it.

It is clear from the review that there could be some improvements to the self-management test. The review team and the minister have recommended that a risk assessment be applied to the support types. Assessing risk based on support type is a fundamentally flawed concept.

For example, a 21-year-old participant has moved out of home and is looking for someone to assist with mowing. Knowing the 21-year-old is on the NDIS, the provider can charge an enormous rate. The 21-year-old is likely to pay this as he is a new single bachelor trying to prove to his parents that he’s “got this”.

On the other hand, a young professional human rights lawyer could need high care for short periods during the day. Because she is stuck using a “standard” registered provider, the worker she will have is someone she doesn’t know, doesn’t have the same values as the participant and looks like a deer in the headlights when the young lawyer asks them if they have any opinions on the social model of disability.

My recommendations for safeguarding of all participants: Currently, NDIS providers are subjected to 24 acts nationwide, including the Quality and Safeguards Commission, regardless of registration status. What is missing is an investment in upskilling the justice system that would support the safeguarding of people with disabilities in and outside the NDIS.

A $5b a year for ten years investment in the following

$3b per year for emergency services to upskill the first responders and the courts to undertake training and policy development that assists disabled people in equitably accessing the justice and emergency system.

This investment should not only be co-designed by NDIS participants but also include any training that can be developed, facilitated, and overseen by disabled consults and facilitators.

$2b per year for investment to ensure that service providers have a paid steering committee overseeing practice standards with an award-waged FTE Disability liaison officer who consults consumers and their families.

Service Providers and the government would share the cost. The DLO must not be a client of the service provider and must not be subjected to NDAs (gag orders)

A separate investment of $1b a year for ten years to advocacy organisations to deliver rights-based awareness campaigns, advocacy and leadership initiatives for people with disabilities, and is to be designed, run and evaluated by people with disabilities.

My Recommendations for fraud mitigation while ensuring the rights of NDIS participants are:

Document OG Creating your plan 20231230, pages 8 states:

“Your plan will include information about: • you and your living situation • your goals, or things you want to work towards • who supports you, for example your family, friends, community, and other government services • any NDIS supports we fund

how you can use your NDIS funding
who will manage your NDIS funding
when we’ll change your plan.

This guideline is about how we make decisions when we create your plan”

It is clear that these OG are not being followed and are not being used to asses someone’s suitability to self-manage correctly. The first four dot points must be considered in deciding whether self-management is appropriate, as this will improve risk mitigation.

*I note the recently proposed Bill introduced in March will also allow the NDIA to consider if a participant’s budget has been overspent in determining if self-management is appropriate. Thisl presents a high risk of people being forced off self-management with no recourse.

In addition, I put forward the following recommendations.

Suppose participants enter the scheme wishing to self-manage but have never self-managed a state or territory health or disability package. The participant is offered a 1 to 2-year plan management plan. At the end of the plan, the NDIA must prove that the participant is not

Changes to Reasonable and Necessary Supports and what the NDIS will fund:

At the moment, R&N applies to the support you need. Things like AT, support workers and small bits and pieces like gloves, grabbers to pick up things or that weird stick thing you use to pick up things independently. The bill says all of that is the same however, the NDIS will create a list of “NDIS Supports” and where you can buy it. But how would the NDIS know what you need more than you? And what if you can’t find it near you?

What is more concerning is what R&N will be applied to..Funding! Currently, plans are decided based on the support you need, not the funding. For example, 6 hours of support a day, 2 physio sessions a week and some assistive tech to help you reach your employment goals. With the help of the price guide along with your reports, the NDIA then calculates how much all of that will cost and then, hopefully, a few weeks later your plan arrives.

Concerns Regarding the Proposed Changes to the National Disability Insurance Scheme

Under the proposed bill, a R&N budget will be given to you based on the whole person and the government has been using that tagline “see the person, not the disability” Something that strikes me as odd being a disability insurance scheme but sure. The funding will be decided on what “NDIS supports” you need, not frequency or why and will be given in one big (or small) bucket. The Government says this will be better because it gives people more flexibility over funding. Instead of having a physio bucket and a support worker bucket it will just be one bucket. Still, it all sounds good; however, when your bucket is smaller than what you need, it will be very hard for people to challenge it. You won’t be able to go back to them and say “I need more personal care” because they will look at your funding and say there’s plenty in there. This will mean you will have to choose between that physio session or hanging out with your family on Christmas day, or buying those headphones to help with sensory issues and giving up support to help you go out to the movies with your mates. Those outcomes are looking a bit sad.

In closing, I am concerned that:

The Bill places essential Scheme architecture to the legislative instrument (the Rules), rather than placing essential architecture in the primary legislation; this means there will not be parliamentary oversight of the development of the future NDIS.
The expected cost savings to reduce the rate of cost growth (targeting 8% p.a) will not eventuate, and participant outcomes and potential safe access to essential disability support, could be compromised by the changes contained in the Bill proceed.
As yet, there is no publicly available bill implementation plan (or formal acceptance of the NDIS Review recommendations), and implementation has begun. This plan needs to be shared transparently and as a priority so that the community, and parliament, can understand the vision and intention of the Bill.
There are safety risks associated with rapid change management and access to support during transition periods, how have these been identified and mitigated?
There is not enough detail and scaffolding in the Bill, regarding Needs Assessments. These will be mandatory assessments and will determine plan budgets. These must be delivered by qualified health professionals, as recommended by the NDIS Review. We must get the design right BEFORE legislation is changed. Appeal rights will need to be clarified.
The Support Needs Assessment will directly inform plan budgets. The ‘method’ will for this will be determined by the Minister (subclause 32K(2)). – this should be detailed in the primary legislation. Without transparency principles outlined in the legislation, this process will not have parliamentary oversight, and we return to the issue of the method of budget-setting taking place in a ‘black-box’ i.e. utilising assessment scores in an unknown and potentially unproven manner. Key principles around this ‘method’ will need to be included in the NDIS legislation, for transparency, trust, sound fiscal management; and to protect the rights of NDIS participants.

Concerns Regarding Future NDIs Supports

NDIS supports will be more limited in future and will only include defined supports - people may miss out on essential disability supports.
The Bill should not be passed until the foundational supports are in place, to prevent creating service gaps.
Leading lawyers have indicated the APTOS table is not ‘useable law’ and should not be linked to the legislation. More work must be done with States and Territories to ensure there are no service gaps.
The full impact of the Bill on the care economy has not been considered – what is known about the impact on access to supports? Employment of carers and people with disability? Loss of essential support providers? Access to allied health? Impact on small business and sole traders? Without detailed analysis, the Bill may lead to unintended or unconsidered consequences.
Segregating groups of participants through a ‘classes of participants’ system determined by ‘identifiable characteristics’, are at risk of becoming discriminatory.
The proposed changes will disproportionately impact and potentially exclude people with psychosocial disability.
Section 30 of the Bill grants enhanced Plan Revocation powers to the NDS CEO - we suggest these may need to be reviewed, especially the 90-day non-response timeframe - where there is evidence that the delayed participant response is disability-related. There are risks for high-needs participants. We refer the reader to the case of David Harris for such an example. David Harris was left to die alone after his NDIS payments were cut off (smh.com.au)
An amendment to Section 34 (item 46), means that only impairments identified at the point of NDIS access can have supports funded, which may disadvantage complex, acquired and progressive disability.
The process to determine, and offer, defined NDIS Early Interventions would need to be described in the Bill, to ensure the scaffolding for effective, evidence-based, contemporary, and co-design of early intervention is in place.
The structure of the flexible budget, should the budget be insufficient to meet basic ‘core’ support needs, may mean that capacity building is not possible due to participants needing to prioritise day-to-day living needs as a priority. This could mean participants cannot access capacity-building supports, allied health, or other supports that have potential to reduce longer-term needs. This could ultimately increase the cost of the Scheme.

Currently, I’m concerned the changes will impact the participants I work and live with every day. The Participant Service Guarantee is currently on pause. There are unprecedented delays in plan reassessments, impacting access to supports, and causing enormous distress for participants and families. I am concerned these issues will only get worse, should the changes outlined in the Bill proceed. More work must be done to ensure the scaffolding contained in the Bill is solid enough to set up an optimal NDIS 2.0, BEFORE dissolving the current legislative framework through Bill ratification.

I am writing to ask you to STOP the changes to the NDIS Act (2013)

goin“g throu”h unti“l du”e dili“gence aroun”d Commo“nwelth governmen”t respon“sibility t”o disab“led peop”le, ha“s occu”rred.

Rega“ds,

Jarr“od Marri”non