Attn. Community Affairs Legislation Committee - National Disability Insurance Scheme (NDIS) Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

(*hereafter called ‘the Bill’)

Submission - response to the

Bill and latest amendments to it.

As family members and NDIS nominees of a participant with complex needs, we welcome the opportunity to provide a submission in response to the National Disability Insurance Scheme (NDIS) Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill) and represent the wishes and interests of a person who cannot speak adequately for himself.

Our Background

We are the parents of a middle-aged NDIS participant with high and very individual needs and a life-long history of needing supports. We have contributed to the disability discussion for over forty years as educators and advocates and worked with medical and allied health professionals, special and mainstream schools and adult disability service providers over that time. We have developed a model of support for our son described by his current therapists as exemplary.

This submission follows our earlier contributions to the now completed Community Affairs Legislation Committee Inquiry that reported on 20 June 2024 published as ‘Name withheld’ (Submission 179).

Contents:

• Our Background p1
• Too many cooks spoil the broth p1
• It looks like history is repeating itself p2
• Some of our remaining concerns p2
• Some suggestions to save money and build a better scheme p4
• Conclusion p5

Too many cooks spoil the broth

A great many stakeholders were consulted before the NDIS came into being and that brings to mind a retelling of an Aesop’s Fable in the 1960s Victorian third grade school reader. It was called “Trying to Please Everybody” and the moral of the story was that you can’t actually please everybody.

The government of the day wanted to improve disability support, create jobs and design a cheaper more efficient scheme. Academics, actuaries and disability providers argued for a competitive NDIS marketplace with private providers. People with disability wanted supports that gave a chance to live a satisfying life similar to non-disabled people.

The NDIS ACT 2013 was designed to please each of these stakeholder groups but the government and the providers had louder voices. As a result, the Act was too complex with competing imperatives and, in spite of all the forums and consultations, was designed for disabled people not with them. (We attended many early workshops but were told not to come back because providers did not like participants and families being there.)

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The emphasis was on service provision, keeping costs down and protecting the scheme. Later Compilations have focused on compliance, risk, safety, costs and punitive measures. Objectives and Principles have been drowned out and the focus is on participant and provider behaviour, not on providing reasonable and necessary supports. It has been acknowledged that the scheme has not delivered for disabled people in the way everyone hoped. The broth had too many cooks and the wrong ingredients.

3. It looks like history is repeating itself

The original Act 2013 was rushed through in a wave of enthusiasm before a federal election. Revisions of the Act have been formulated quickly in response to problems without co-design.

It looks like history is repeating itself. This Bill has been formulated as a response to the recognition of escalating costs and fraud and there will be another federal election soon. The NDIS Review provided opportunities to talk about problems with the scheme and suggest new directions but the Bill is being rushed through and designed for disabled people, not with them.

4. Some of our remaining concerns

5. There are still just too many unknowns. Some of them are:

• This Bill is a ‘Framework’ intended to be filled in by future Rules. Amendments have sought to reassure us by amending the information about the process for creating the Rules but we still don’t know what the Rules will be or how they will be applied. They cannot be scrutinised through any process yet because they do not currently exist.

• We still don’t know who will eligible to be a participant and who will be directed to “Foundational Supports’. We don’t know what those ‘Foundational Supports’ will be or how the NDIS will complement them because they do not exist. We don’t know what will be considered ‘NDIS supports’ or what ‘classes of participant’ will be able to have.

• We don’t know what different States and Territories will put in place and if provision of support will be a bigger postcode lottery than it is now. Leaving the design and provision of supports to the States and Territories does encourage local solutions and innovation but it also means greater potential inequity based on where you live.

• The National Cabinet is currently supportive of reform and States are willing to increase their share of funding. But States have budget problems and outstanding loans. We don’t know how long or far cooperation will extend between the Commonwealth and the States or if we will end up with future arguments about who is funding what. We have little information about how long it will take to build a functional ‘ecosystem’ to support the NDIS from the ground up or what that ecosystem will look like.

2. The consultation process is flawed and incomplete:

• The Bill is a response to the NDIS Review. We were led to believe the Review was held to improve participant experiences and provision of support. The disability community gave of its time, exposed issues, re-lived traumas to report on difficult experiences as participants and offered up their best suggestions during the Review. But it looks like many participant contributions have been misinterpreted. Participants expected recommendations would address the way the scheme is run, that the participant experience would be fixed from beginning to end and they would not have to fight or be traumatised to gain reasonable and necessary supports. However, the Review has focused on reducing supports, restricting access, removing participants from the scheme and increasing the administrative burden on participants and providers alike. Some Review recommendations have shocked many in the disability community and are not in accord with expected outcomes. In the interests of protecting a flawed scheme, the Reviewers have recommended taking away human rights, reducing participant power and control over their own lives and supports and giving greater control to the NDIS and these recommendations are the ones addressed in this Bill.

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• The Bill does not contain a legal requirement for co-design. Recent amendments to the Bill passed by the Lower House introduced a requirement for the Minister to have regard to the value of co-design in relation to subsection 4(9A) of the NDIS Act when making legislative instruments about needs assessments and how a participant’s budget is calculated. The Minister does not have to actually co-design these instruments; he just has to think about it. This is a big concern because, having recognised the importance of co-design to the disability community, the amendments don’t clearly make co-design a requirement for any section of the Bill. The current wording leaves the door open to ignore the disability community completely but creates an impression there will be co-design.

• This Committee recommended that the Bill require the Minister to be more transparent about how the disability community was consulted during development of each legislative instrument and a statement describing any consultation that occurred could be a requirement when developing all legislative instruments under the NDIS Act. This would improve transparency and aid Parliamentary scrutiny: a worthy end in itself. But it does not require meaningful consultation to occur and if the Minister can make a case for limited collaboration, Rules with little or no community input may escape Parliamentary veto.

• The Bill may still limit a participant’s right to make complaints. As fewer ‘decisions’ are made by NDIS officers and there is greater reliance on tools, scores and algorithms, there will be fewer reviewable decisions. The government has also indicated it wants to change the Administrative Appeals Tribunal system and we have no certainty that there will be an effective external umpire.

• Because the government is in a hurry to pass this Bill, we are struggling to identify all of our concerns and bring them to the table. Even advocacy groups are limiting their responses to subsections of the Bill with the most potential harm to participants. There has not been enough time to have proper consultation about the Bill itself. We are fearful something important is slipping through without comment from the community.

3. The focus of the Bill is still on saving money and reducing the cost of the NDIS, even at the expense of participants:

• The Bill gives greater power and control to the NDIS and takes choice and control away from Participants. Decisions about what constitutes an ‘NDIS Support’, the ‘classes of participant’ and who can ask for what are going to be made by the NDIS. This power is intended to be used to ’make it fair’ (standardise supports) and save money. The government has recognised concerns over Section 10 and says it will engage with the disability community when defining ‘NDIS Supports’. However, there is no clear indication of what ‘engagement’ will be and no commitment to co-design. We don’t know how broad or narrow or flexible these supports will be. Although the amendments may improve Rules made under Section 10, there is still great uncertainty about how this will reduce participant’s choice and stop them asking for necessary supports.

• The government intends to stamp out criminal activity and abuses of the scheme and has made separate provision to increase governance of providers. But this Bill targets participants. There are undoubtedly a few who have taken advantage of the scheme and engaged in criminal activity but the vast majority have not. They are being penalised for a badly set up and poorly run scheme. Participants believe they can spend funds flexibly because they are told they can. It is hard to clarify what can be purchased flexibly and what cannot because the participant side of the NDIS website lacks detail and NDIS staff routinely say “NO” to if asked. Participants don’t set provider rates. They have little if any control over invoices sent to plan-managers or the NDIS and little choice of providers in regional areas. Even self-managed NDIS Plans can contain Stated Agency managed supports and participants have no oversight of invoices sent to the Agency. Yet this Bill aims to limit participant funding, increase control over spending and bring in measures to punish participants such as raising debts or removing participant status. This Bill places too much blame and restriction on participants.

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This Bill does not contain measures to deal with the running of the scheme itself:

• There are no requirements to make Rules about improving NDIS staff performance. There are currently inadequate consequences for NDIS staff who make poor decisions, misinterpret the meaning of subsections of the NDIS Act or treat participants adversely after receiving complaints. Poor NDIA decisions have cost many tens of thousands of dollars to rectify for our participant and if replicated across the scheme would have cost many millions.

• The are no requirements for genuine collaboratively co-designed NDIS plans. The current system is the the participant provides information and evidence and can request particular supports. The Agency creates the Plan for the participant. Participants rarely see a draft for comment and often find out about their new Plan a week or more after it has started. Genuine collaborative planning would mean participants could use supports from day one and would minimise conflict and the need for reviews.

• There is nothing about restructuring or downsizing an underperforming NDIS workforce. There is no indication NDIS staff training and qualifications will be improved or how that will be achieved to gain better and more consistent outcomes for participants.

• There are no measures to make it easier to complain about the general performance of NDIA or a staff member to an external body.

5. The raft of amendments passed or proposed have tinkered with bill:

• The amendments passed or proposed do not substantially change the content or intent of the Bill.

• Statements in the Explanatory Memoranda do not seem to accurately reflect the effects the Bill will have.

6. Nobody is ready:

• The resources are just not available to restructure the scheme as set out in the Bill. The States and Territories shut down disability supports and would have to create supports from scratch. Universities would have to redesign existing courses to cope with the inclusion of disabled people in ’Fundamental Supports’ such as schools and it will take time for students to graduate.

• There are not enough allied health professionals to keep up with the current demand for service and in answer to a question on notice from Senator Jordan Steele-John (Public Hearing – 14 June 2024), Mr Swainson said “The National Disability Insurance Agency has not received any advice on the capacity of allied health professionals to deliver National Disability Insurance Scheme needs assessments.” Without that modelling nobody can predict how long it may take for a participant to get an assessment. Participants could face long wait times without any support or be kicked off the scheme because there are not enough providers.

• It is not clear what will happen to people who remain participants over the age of 65. The current age care system is not set up to take on more people with high support needs. Will there be Rules made to remove them from the scheme? What will happen to them if they fail to provide evidence in time and get kicked off the scheme?

Some suggestions to save money and build a better scheme:

• Reject this Bill until it can be co-designed. Include requirements for co-design of all Rules and regulations under the NDIS Act.

• Reform the internal workings of the NDIA and Quality and Safeguards Commission to re-focus on the core business of providing support to participants.

• Include requirements for genuinely collaborative co-designed NDIS Plans to avoid reviews and litigation.

• Simplify how NDIS staff make decisions. Currently they have to consider too many competing things when deciding what is ‘reasonable and necessary’.

• Simplify the whole scheme so planners don’t have to try to please everybody. There are too many proscriptive Rules and Regulations. There are too few that allow for variation and innovation to meet individual needs. This leads to conflict and reviews and extra costs.

• Help participants to make better use of their funds. Don’t ban specific supports such as groceries and holidays. I bought face masks meeting Australian standards from a discount manchester store for as little as $1.25 a box but a registered NDIS provider was charging $45 for the same item. A well run farm-stay holiday would provide an almost identical experience to a short respite stay with a rural registered provider at a fraction of the cost. It doesn’t take an allied health professional to light and sit around a campfire or help a participant feed a chicken.

• Take a different tack to controlling NDIS providers. Equip other agencies such as ASIC, the ACCC and the police to be inclusive organisations that protect and regulate NDIS providers so there is less for the NDIS and the Commission to do.

• Require NDIA and outsourced Local Area Coordinators to retrain to build understanding and empathy. (Ex-LAC employees have said they were trained to show no empathy to participants and discourage spending.) This will reduce repeat applications and reviews.

• Identify participants who are innovative and frugal and learn from them.

• Require invoices submitted to the NDIA by providers or plan managers to be checked and service confirmed with the participant before they are paid.