National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 submission

I have prepared this submission to the Getting the NDIS Back on Track No. 1) Bill 2024 inquiry as an NDIS participant. My experience illustrates clearly some serious risks with the new legislation. I strongly feel that this legislation should not be passed, even with modifications. I have had assistance from carers to prepare this submission, and have had several setbacks to my condition from my work on it.

I would like to divide my submission into seven parts, as follows:

• Summary

• Part 1– Overall Legislation Changes

• Part 2 – My story of my eligibility being revoked and the importance of the right to external review

• Part 3 – Problems with dividing participants into classes

• Part 4 – Problems with independent assessments

• Part 5 – Problems with revoking eligibility if a specialist report is not supplied within 90 days

• Part 6 – Costings

• Part 7 – Minister’s powers

The relevant sections of the draft legislation include: 10 (redefining an NDIS support), section 27 as it relates to 24 (rules which may modify the interpretation of the eligibility criteria), Subsection 30(2) in relation to revoking eligibility where a report is not supplied, section 32 where it relates to needs assessment and section 124. My understanding comes from the lawyers’ submissions, websites, and talks at the senate hearings.

Summary

Under the current legislation, after being accepted in with early roll-in, my eligibility was suddenly revoked. I appealed to the AAT, and the NDIA and eventually conceded. My plan went up substantially at the next plan review.

Under the proposed legislation, an independent allied health professional for each new plan, reviews eligibility and needs. This report can’t be appealed.

One person, who has never met you before decides your future for one year or, if you’re kicked out, the rest of your life. You cannot expect them to get it right the first time, for every single participant.

Carers assisted with typing but it is all my own words.

When I was kicked out, I had 75 medical reports consistent with my being eligible, and zero said I wasn’t eligible, yet the NDIA tried it anyway. At the end of a long appeal, they conceded they were wrong. It took an external process at the tribunal to make this happen. They balanced out the plethora of medical opinion about my disability and decided that I had a very severe disability that was likely to be lifelong.

I have had this condition for 22 years, and for the last 14 and half years, I have been very severely disabled, and completely dependent on the help of other people and technology for every aspect of daily living. This includes eating, drinking, taking medications, showering, leaving the house, exercising, communicating with people outside the house, or being a part of society. This would be a life more restricted than the toughest lockdown, with no end to the restrictions.

My lawyer told me that in the legal world, anyone who has a disabling condition for 3 or more years and undergone all the recommended evidence-based treatments has a disability that is likely to be lifelong. I have had the condition for 22 years, been severely disabled for 14 years, have an itemised list of over 100 treatments I’ve tried, 100 tests I’ve had, and 50 specialists I’ve seen (including independent ones). The opinion of one allied-health professional who has met you once should not ever be able to override this.

It is a dangerous precedent for a government to take away people’s right to appeal this most important of decisions. Almost every decision of government is reviewed.

We can’t do away with our legal system simply because it costs money or there would be no check to executive power or rule of law.

People with disabilities should have the same rights to appeal a government decision as people who were unfairly dismissed or passed over for promotion, or even more so because there should be a duty of care.

There should be no eligibility reviews (after the initial access to the scheme) without cause, such as that there has been a substantial increase on function to the extent that the participant may no longer need supports, or evidence fraudulent information was presented in the access request.

People’s supports should be individualised and not based on classes.

Part 1– Does the legislation meet its aims?

In light of the findings of the Robodebt Royal Commission, I would like to have more confidence that this legislation is both ethical and has been conducted according to proper legal process. The lawyers in the senate hearings told us it is highly unusual for these sweeping act revisions that rely heavily on rules to be drafted in the absence of any details about those rules, and that it is also highly unusual for decisions about eligibility and supports to be not reviewable. No justification has been given for why this should be the case.

The Disability Discrimination Commissioner Rosemary Kayess questioned the human rights issues around treating a person as an impairment alone. I have doubts that there can be different laws for different classes of people with disabilities without this constituting a form of discrimination, especially if people with rare disabilities fall through the cracks because

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Why are there conflicts between parts of the legislation?

they don’t fit into any “class”. Could there be conflicts between one part of the legislation and another? Why have points necessary for eligibility (e.g., Sections 10, 27 and 124) appeared outside the eligibility criteria (Section 24)?

Why were large sections of Explanatory Memoranda added the very day submissions were due? And why make organisations participating in consultation sign non-disclosure agreements?

Rushing in this legislation without proper process and without informed consultation of people with disabilities is risky. There doesn’t seem to be a reason for such a hurry. Yes, the NDIS review involved a lot of consultation, but the review is not the review recommendations and the review recommendations are not the legislation.

Prof Bruce Bonyhady AO, the chair of the NDIS review, when questioned by Senator Holly Hughes, said he had not realised that the needs assessment was not reviewable in the draft legislation and believed that it should be.

If the review had asked participants “Would you like to have a tick-box questionnaire by an independent assessor you’ve never met to decide your future with no right to appeal, to be kicked out because you couldn’t get into a specialist, or to lose your individualised supports in exchange for a list of supports to choose from, none of which accommodate your needs?” then you could argue that there was proper consultation. Most people don’t know that this is in the proposed legislation.

I would question whether new legislation is required to achieve the purported aims of this draft legislation. The original legislation does not prohibit longer plans, more flexibility, more opportunities to self manage, or eligibility based on function. If participants with certain diagnoses were erroneously granted access via List A, they could simply move just these diagnoses to List B, without overhauling the whole NDIS. Or if they wanted to do more, they could remove List A and List B, and make all participants fit the section 24 criteria.

The supports that are better placed within the education system are already excluded under the current reasonable and necessary criteria, for this reason. If the NDIA want more people to be allowed to self-manage their plan, they can do this at a policy level without changing legislation.

The only thing they really can’t do with the current legislation is grossly cut funds from the most vulnerable participants who easily meet the eligibility criteria with no appeal right: and that is a very good thing!

Part 2 – My story of my eligibility being revoked and the importance of the right to external review.

“People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.” [NDIS Act Chapter 1, part 2 section 4 (3)]

Before the NDIS, I’d been severely disabled and completely dependent on my elderly parents and self-funded equipment for nearly five years. Everything I do is impacted and has to be done in a special way.

Carers assisted with typing but it is all my own words.

I had been accepted into the NDIS in 2015 with early roll-in and a plan over $100,000 in the first year. In the second year, I requested more care as my mother was providing more than 100 hours per week care for my disabled father and me. There was no medical evidence that challenged my eligibility, only my diagnosis, which is irrelevant, but more than 75 reports that supported my eligibility.

I needed assistance with all aspects of daily living but we could not afford the level of care that would prevent or even slow down the decline in my condition, and I was at serious risk.

I worry that the way the legislation is written, the NDIA could kick me out again at any time, and I worry for the other people they could do this to.

Without the support of people and equipment or modifications I could not get through the day, with no capacity for eating, drinking, showering, exercising, cleaning, shopping, laundry, phone calls and emails, social interaction or entertainment. With the support of the NDIS I can do all of these things.

It is already too easy to revoke a participant’s eligibility, or substantially reduce their plan, but if you remove the right to appeal it is utterly unfair and unconscionable. Instead, section 30 should be changed so that the NDIA may only review eligibility when there is a major change of circumstances or evidence of fraud.

NDIS Act Section 4 (4) General principles guiding actions under this Act Principle 7 states:

“People with disability have the same right as other members of Australian society to pursue any grievance.”

Decisions of this magnitude in just about any other area of Australian law are reviewable. Workers’ Compensation, missing a promotion because of discrimination, taxation private rulings, parking fines, vaccine mandates, and countless other reasons. Internationally this is also the case. If we cannot appeal a critically important decision such as this, then we are not given the same rights as other Australian citizens to pursue a grievance.

Part 3 – Problems with dividing participants into classes

Section 124 states: “a support is taken to be an NDIS support for a person for the purposes of the National Disability Insurance Scheme Act 2013 if:… And… If a heading in the table indicates that supports listed under that heading are only for people in a particular class—the person is a person in that class.”

Benchmarking based on medical diagnosis is a very inaccurate and unfair way of determining a participant’s needs, and is antithetical to the NDIS notion of individually-tailored plans which is foundational to the NDIS. If there were suddenly only three different types of plans for autism, for example, this would be like a surgeon replacing their scalpel with a sledgehammer.

The problems with dividing people into classes are manifold, but include:

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Part 4 – Problems with independent assessments

I cannot count the number of times I’ve been required to prove I’m disabled, prove that my disability is likely to be permanent, or prove that I can’t do various activities. Every time this occurs it involves bringing up past trauma and pain.

After every assessment (either from an independent physician, independent allied health practitioner, or an NDIS reviewer or planner) I have experienced a setback lasting months to years.

A great deal of money is spent on these medico-legal assessments that could be put to better use in funding supports.

With this legislation, the NDIA would reassess the eligibility and needs of every Australian with a permanent disability (over 600,000 participants) every five years. This is an incredible expense and could only save money by kicking out genuine cases. What is the point of reassessing the eligibility of people who have already proven their impairment is permanent? What about a participant with no arms. Do we really need to check that their arms haven’t grown back? What a senseless waste of taxpayer money.

Underlying all of this is an assumption that people with disabilities are not to be trusted, not capable of understanding their own needs. While this might be true in some cases it is not true in all or even the majority of cases.

The implication by calling such professionals “independent” is that the other practitioners are somehow biased, simply by virtue of the fact that they might have met you before (in a

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Part 5 – Problems with revoking eligibility if a specialist report is not supplied within 90 days.

This is an incredibly unfair and discriminatory clause. It is discriminatory because it privileges people in urban areas with money to spend who do not have impediments to seeing or booking a specialist based on their disability. It has no consideration whatsoever for how much a disability can impact on self-management, mobility to attend appointments, use of telehealth devices (internet or phone), or even communicating with the NDIA. It is incredibly unfair that the NDIA can take a whole year (in my experience) to contact me about an OT report, and lose about 50% of reports supplied by a participant (in my experience) but we get 90 days, or cut off everything that keeps us alive.

The people with disabilities should be the ones who need extra time, not the public servants.

The most serious problem with this clause is that it is almost certain that it will oust people from the scheme who meet the eligibility requirements and particularly those with more severe disabilities, people in remote areas (especially those in remote Indigenous communities), people from culturally and linguistically diverse backgrounds, and people with limited family support to assist with the arrangements. This is because the clause does not stipulate that they must only do so if the report is necessary to their meeting the eligibility criteria. As it stands, a blind and deaf quadriplegic in a remote community could be kicked out of the scheme because they didn’t notice the report request.

I have numerous experiences which highlight problems in this clause, including:

• The wait time for any neurologist where I live (public or private) was 12 months.
• I’ve had two occasions with two different planners where it took 6 months of attempting to contact them or anyone in their team before somebody told me they had gone 6 months ago.
• This year I emailed the NDIS officer who notified me of a plan rollover to ask a question about it, and I finally got a reply 2 months later, telling me to contact someone else instead.
• In my AAT appeal, the NDIA’s T Documents were missing about half my reports submitted to them, all reports that were the most in my favour. I’ve heard the same story from numerous other participants and carers. In one family the NDIA had lost the daughter’s updated diagnosis from developmental delay to autism.

6. For one assistive technology request it took the NDIA two months just to acknowledge receipt of the OT report, and six months to decline the item. Their determination came on the first day of the Covid-19 lockdown.

7. Recently we were asked to supply receipts and service agreements for a number of items added to the portal. The notice gave us 10 days to supply them. This 10-day period included the Easter long weekend. After receiving the notice 1 day before the Easter long weekend, we then received an overdue notice one day after the long weekend, five days before it was due. This was likely a computer system error, which would most likely be the same computer system that works out the 90 days since a report request was made before eligibility is revoked. Have we learnt nothing from Robodebt?

How can this 90-day rule be fair in this context?

Part 6 – Costings

Before I was severely disabled, I worked in public service policy for five years. The word “sustainable” was a loaded word. When a program to assist the public on a not-for-profit basis was run by a private contractor, “making the program sustainable” was code for withdrawing all government funding in the hope they’d find some miracle donor to pay for it. There is no miracle donor to provide this level of support. The assumption behind the term in the NDIS is that if we spend money on the NDIS now, this will come out of NDIS funding in the future. But is this true?

Ask yourself, have you ever heard someone in Government say “We can’t afford these nuclear submarines because they’re not sustainable?” I haven’t, there is no assumption that defence spending now will hurt defence spending later, similarly, we don’t cut out funding for neurologist appointments now so we can afford them later in Medicare.

Medicare, in particular, is kept out of the annual budget cycle because it is an essential need. This was the original intention of the NDIS. The 2011 Productivity Commission study which gave rise to the NDIS stated:

“The scheme would not be tied to the annual budget cycle but would have mandated funding hypothecated to a separate fund.” “Funding of the scheme should be a core function of government (just like Medicare).“

It needs “legislation that protected the scheme from political influences.“

“The Commission proposes several options for providing certainty of future funding. Its preferred option is that the Australian Government should finance the entire costs of the NDIS by directing payments from consolidated revenue into a ‘National Disability Insurance Premium Fund’, using an agreed formula entrenched in legislation. The amount needed could be funded through a combination of cuts in existing lower priority expenditure, fiscal drag, and if necessary, tax increases.”

This is not what has occurred.

This concept was proposed in 2017 to increase the Medicare levy to also cover the NDIS. The Productivity Commission’s report argued that it would be fair for all Australians to

Hypothecated Funding

Contribute because anybody could become disabled. A possible exception might be people over 65 who aren’t already in the scheme, as they will never be eligible.

Hypothecated funding provides security for future budgets, and less biased decision-making processes.

The justification for this was:

“Most families cannot adequately prepare for the risk and financial impact of significant disability. The costs of lifetime care can be so substantial that the risks and costs need to be pooled.”

This could not be achieved without mandated hypothecated funding.

In fact, this report argued that the more you spend now, the less you need to spend later, because of the principle that a stitch in time saves nine. For example: “Under-servicing in one area — such as not enough access to respite and home modifications — results in costly additional servicing in another less appropriate area or at a later time (such as someone staying in hospital because their home has not been modified).” And: “There would be some savings over the longer-run from the fruits of early intervention…“

The money invested now in supporting me to exercise now means that in the future, I am less deconditioned and less dependent on supports than I otherwise would have been. Supports that relieve the burden on family carers make their assistance more sustainable in the future.

Support workers assisting a participant with showering and transport, or vehicle and bathroom modifications might allow them to attend work. Respite care might also allow the family of a participant to return to work.

Of course, it is always important for the NDIA to act more efficiently, and to minimise fraud. There can be savings in less frequent plans and allowing more people to self-manage their funds, but not $14 billion worth. Denying people the right to appeal one of the most important decisions of their life is never justified under “Sustainability.”

The main flaw of the Productivity Commission Study was not to set the bar too low for access, but to grossly underestimate the unmet need there was in the community. People like me who didn’t have previous support were not known to the system.

Here are some reasons for NDIS cost increases recently:

• When the scheme first started the oldest participants were 64. Now they’re 74. This extra cost has been taken out of Aged Care.
• Minimum shift times have increased from 1 hour to 2 hours, meaning if you can’t use them for 2 hours you’re paying anyway.
• Wage growth for carers, inflation on equipment.
• Participants can do more therapies and outings since the lockdowns lifted, and their function declined while these were restricted.
• Covid expenses like RATs, PPE, and special covid provisions.

The Minster has been given unprecedented powers, such as powers over an individual applicant’s access request, and the time at which their access commences. This kind of waitlist to access Government funding for supports even though the provider of the supports has availability has been used for many years in the Aged Care system. There is no justification for this and it could only be used either for blatant cost-cutting, or to discriminate against certain individuals or groups. Why does the Minister need to intervene at this level?

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