Attn. Legislative Affairs Committee

Date: Friday 17th May 2024

I am writing to you to express my concern about planned reforms to the National Disability Insurance Scheme (NDIS), as they are articulated in The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. As an NDIS participant and a Carer for NDIS participants, 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, will disadvantage many disabled Australians; and prove more expensive in the long term as disability needs are neglected.

Many things concern me regarding this Bill. Tinkering around the edges and making a few changes will not make it acceptable. It needs to be stopped, scrapped, and the process completely restarted, with co-design, and input from those with specialised knowledge in human rights, which seems to have been missing this time round.

There will be many capable people making submissions, so I will only expand on a few points that I care the most deeply about (noting that all the points I have seen raised by others so far have been important, but I have less ability to contribute on some issues). I have used some points from other people to help structure my comments. I have rushed this so please excuse any errors.

My main areas of concern include the discrimination of psychosocial participants and the harm that will result from that, the excessive power given to the CEO regarding requests for information particularly implications with regard to victim/survivors, and the assessment process.

Lack of Parliamentary Oversight

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.
As yet, there is no publicly available Bill Implementation plan (or formal acceptance of the NDIS Review recommendations), while implementation has clearly 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.

This Bill itself does not make the changes to the NDIS that the Government and Minister Shorten have been proposing, but it does open the door to them, in some cases it opens the door very wide indeed. When the legislation is considered in light of the changes they are proposing, this is concerning. But even what is contained in the Bill itself is concerning enough.

Trust us – We Pinky Promise the Next Step will be Co-Designed. Passing this legislation would require placing a large amount of trust in the Government about as yet undefined Rules for much of it, or decisions by the CEO, including regarding access, methods of assessments, and supports.

Because the legislation gives the power to change these Rules and Decisions more easily than if they were in the legislation, we need to not only trust the current Minister and CEO, but anyone who may occupy those roles in the future. That is a lot to ask.

The Government is promising that the new NDIS Rules will be co-designed with people with disability. Many in the disability community are sick of hearing this. They have promised co-design many times over the past two years, yet the Government has spectacularly failed to do this. Some examples of this are below.

The 8% Growth Cap

The 8% growth cap (yes they called it a target at first but the language changed to “cap” at least for one point in time), was done with no consultation, and to date, they STILL will not release any information around their Framework, even to the Senate. This lack of transparency is not acceptable.

Joint Standing Committee on the Capability and Culture of the NDIA

There has still not been a response to this report, 6 months later. This report found that the practices of the NDIA in some cases were illegal, yet the NDIA has continued with these and is trying to now put these policies into legislation. More than that the Memorandum that goes with the Bill states that that is one of their intentions, noteing that it has been administratively doing these things anyway. They are currently acting against the legislation, they know that, and yet they have continued anyway.

From the JSC report:

“2.29 The NDIA’s distinction between ‘primary disability’ and ‘secondary disability’ has no basis in its governing legislation or the reality of participants’ lives. This section will consider the impact that this imposed differentiation, which operates as a form of discrimination, has on participants. As a starting point, it can result in participants being denied supports for impairments that the agency determines are not related to their ‘primary disability’

I would like to request that the Senate Committee look into the NDIA’s Policies and Guidelines around the issues identified in the JSC report further (such as those around invisible and multiple disabilities), including decisions that have been made since this report came out and any implications for participants.

While it has been claimed that the reforms to the NDIS include a whole-of-person approach and will no longer include primary and secondary disabilities, the distinction between the impairments recognised at Access shows this

The NDIA’s Use of Terminology

to be false. The NDIA cannot even consistently use the terms condition/diagnoses/impairment/disability, using them interchangeably at will. The new legislation provides less clarity in this regard, not more.

The Independent Review into the NDIS

The Independent NDIS Review was supposed to be “Independent”, but this is incredibly questionable.

Is there a definition of “Independent”, a set of requirements that must be met for the Government to claim something as being “Independent”, or can the word be thrown around with abandon? Is it just down to if people think it passes the “pub test”?

In the NDIS Quarterly Report for 2023-2024 Q1 (September 2023) it states that:

“The NDIA has actively engaged with the Independent Review into the NDIS (NDIS Review). The NDIA Chief Executive Officer and Board Chair regularly met with the NDIS Review Co-Chairs during the quarter, for strategic discussion on the NDIA’s reform priorities and the NDIS Review’s emerging recommendations. The NDIS Review will report to the Disability Reform Ministers Council in November 2023.”

“The Review panel has been consulting widely and listening to the community, and the Agency has contributed extensively throughout the Review. A final report is expected to be provided by the Independent Review Panel to Disability Reform Ministers in November 2023, and more information can be found on the NDIS Review website. It is expected that the NDIS Review will lead to changes in the NDIA’s work plan. Initiatives and activities described in this report, many of which commenced prior to the announcement of the NDIS Review, should be viewed in that context.”

They may have let the public make submissions and have their say (although it should be noted that the percentage of PWDs that made submissions was small compared to other groups), but the views of the disability community have then been ignored. That is NOT co-design.

Community Research Reports

There is a series of four “Community Research Reports” that can be found on the NDIS webpage. The fourth report shows that people find some of their proposed reforms like changing SIL ratios to 1:3 and raising the thresholds for children with developmental delay “unpalatable”. This report then looked at ways to present ideas that would provide “qualified tolerance“ for these reforms. The use of these points can be seen in the language they have been using, particularly since the Review came out.

This is not co-design, it is manipulation. It is not acceptable.

Community Research Report 4 Titled “NDIA Reform Communications Testing: Round Two Focus Group Research Report October 2023” By Redbridge – Influence with Integrity

https://data.ndis.gov.au/reports-and-analyses/other-analyses

“Changes to Supported Independent Living and Developmental Delay Threshold: Proof Points Provide Qualified Tolerance for Otherwise Unpalatable Reforms”

“After presenting respondents with the above proof points that provide vital, believable context of reforms designed to benefit participants, we were able to elicit a degree of qualified tolerance for reforms that would restrict either eligibility for the Scheme (raising the threshold for children with developmental delay) or the amount of support high-need participants would receive (moving to a 1:3 care model for Supported Independent Living participants). That is, respondents do not like these reforms but they may be willing to tolerate them where there are certain compensating factors.”

They then suggest points that might provide this tolerance such as:

Carve-outs for exceptional circumstances (i.e., we are not forcing everyone into the same box, and the most in need are still fully supported).

“2. Initial goodwill generated by the measures to humanise the Scheme and to protect participants (and the Scheme) from exploitation. Conversely, there is a strong resistance to any discussion of costs alone as a driver of reforms. Indeed, cost discussion without prior contextualisation via the humanising reforms led to opposition that was considerable and intense. We therefore do not recommend discussing either reform in isolation.”

“3. Alternative or ‘offsetting’ benefits in place. For example, in relation to the threshold for developmental delays, there is more (but not out-right) acceptance once respondents had been treated with the idea of investing in mainstream supports for children (through schools/kinders/etc) to enable earlier intervention and improve the safety net. In relation to the Supported Independent Living (SIL) changes, these become more acceptable when couched in benefits around reducing social isolation and ensuring people don’t fall through the cracks”

The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 This legislation has been dropped unexpectedly on the disability community. Yet again, this is NOT co-design.

So when Minister Shorten and the NDIA say trust us, we had to do it like this, the Rules and the rebuilding of the Scheme will be co-designed, I do NOT trust them to do this.

There must be transparency, and there must be parliamentary oversight of the development of the future NDIS.

Segregating groups of participants through a ‘classes of participants’ system determined by ‘identifiable characteristics’, is discriminatory. The proposed Bill mentions the phrase “classes of participants” several times, and it outlines that they will have the power to treat these “Classes” differently, in terms of Access and Supports. While the exact Classes have not been defined (at least not publicly), in the legislation they have given themselves the power to define Classes based on ANY IDENTIFIABLE CHARACTERISTIC. This should ring alarm bells. There is a very real risk of discrimination through enabling this.

The proposed changes will disproportionally impact and potentially exclude, people with psychosocial disability. Psychosocial Participants will very clearly be one of the “Classes”, based on the stated intention of the Government to discriminate between them and other participants by putting most psychosocial participants onto an Early Intervention Pathway. This targeting of psychosocial participants should not be accepted.

Early Intervention for Mental Illness is NOT the same as an Early Intervention Pathway In the Community Research Report #4, as available on their website, it says that

“Early intervention is universally perceived as an unalloyed good with transformative potential - both for the lives of the affected individuals and also for the broader benefit of society/the community at large through preventing the harms that accrue with untreated/unsupported disabilities. Early intervention in the psychosocial context proved powerful because mental health issues can produce an immediate ‘risk of life and harm’, while early intervention for children was perceived as a critical means of preventing such crises into the future.” However, when talking about early intervention, this term SHOULD mean intervention at the start of a person’s illness, when they first show signs of it. It should NOT mean early in their interactions with the NDIS. They are not the same thing, and should not be confused.

Many psychosocial participants have lived with their disabilities for years, if not decades, by the time they apply to the scheme. There are already huge barriers for those with psychosocial disability applying to the NDIS and

Changes to Access for Those with Psychosocial Disability

Getting the supports they need. The utilisation rate of plans is also lower. This has even been stated in peer-reviewed journals looking at exactly this issue.

Is early intervention for mental illness a good thing? Yes.

Is an “Early Intervention Pathway” for psychosocial participants in the NDIS a good thing? No.

Participants with Psychosocial Disability are already discriminated against. While the Government likes to quote data for Eligibility for Access Requests for psychosocial participants over the entire 10-year period of the NDIS’s operation to argue that it is not true that it is harder for them to get accepted, they are avoiding the relevant statistics that show that psychosocial participants are now much, much less likely to be found eligible compared to those with other disabilities.

The 2023-2024 Q3 supplementary data for the Quarterly Report was released on the NDIS website this week. hhttps://dataresearch.ndis.gov.au/reports-and-analyses/quarterly-report-supplements

In “Supplement E National 2023-24 Q3.xlsx” on sheet E8 it shows that while the percentage of access decisions eligible for psychosocial disability over time is 69%, for Q3 (i.e., the quarter to March 2024) was just 42% (it has been around this level, or below, for several successive quarters). The only categories lower than this were the “Other” categories. All of the other named categories had eligibility rates between 73% and 100%. Please note this is the percentage eligible, so arguments that they have processed fewer applications because of the change to PACE are not relevant.

It is also worth noting that the rates are very different based on age, with very few applications for participants <25 years old being successful. Since many mental illnesses start in the teenage years or early 20’s many people are missing out on help. But if the argument is that those currently missing out are the ones they want to target with the early intervention pathway, leaving other participants able to become full NDIS participants, then that would mean a significant increase in both participant numbers and funding required for those with psychosocial disability, which is definitely not what has been indicated. There has been a clear intent to decrease psychosocial participant numbers.

Mr Shorten said in an interview last year that they were expecting 27,000 psychosocial participants would be “diverted” from the scheme.

The Government is well aware that supports for people with psychosocial disability outside of the NDIS are far from adequate. There is nowhere to “divert” people to. Yet no significant measures to address this have been made. The decrease in Better Access appointments from 20 to 10 last year has made things worse for people with severe mental illness. The budget measure this week about the addition of online mental health services to be used for people with less severe symptoms even than those requiring the Better Access sessions is a joke. This is not a solution. Proposed changes to the NDIS will cause further disadvantage in this group.

Changes to Access for Those with Psychosocial Disability Will Directly Cause Harm

The whole NDIS process is very stressful. Although I am now a participant, I have serious concerns for others, especially those with psychosocial disability. To put psychosocial participants on a pathway where unlike other participants they don’t have certainty of support for their lifetime, but will instead be placed on an Early Intervention pathway for “up to 3 years” with “frequent reassessment” to see if they need to be on the NDIS, or if they should be kicked off into non existing “Community Supports” WILL lead to significant harm, and I strongly believe an increase in suicide among this population. The impact that the lack of certainty and the fear of losing supports will have cannot be overstated.

I would like to refer you to an article that supports the view that this reassessing of participants will cause harm.

‘First, do no harm’: are disability assessments associated with adverse trends in mental health?

A longitudinal ecological study

Barr B, Taylor-Robinson D, Stuckler D, et al. j Epidemiol Community Health 2016;70:339– 345.https://jech.bmj.com/content/jech/70/4/339.full.pdf

In summary, this is a paper from 2016 from the UK, where they introduced reassessments for disability payments (I think more like our DSP). Doctors and disability rights organisations reported they thought that the reassessment was having an adverse impact on the mental health of claimants. So the researchers checked it out.

They concluded “The programme of reassessing people on disability benefits using the Work Capability Assessment was independently associated with an increase in suicides, self-reported mental health problems and antidepressant prescribing. This policy may have had serious adverse consequences for mental health in England, which could outweigh any benefits that arise from moving people off disability benefits.”

While there are differences between this research and what the NDIA is proposing, I believe this is still very relevant, because that reassessment process is there, and the fear of losing support is there. That is even before any effects of people actually losing their supports because of a reassessment is considered.

In trying to look into this more I contacted the corresponding author of the paper. When I described the proposed changes to psychosocial participants, where they are put on a pathway that would include frequent reassessment for eligibility, he agreed that their paper seemed very relevant. I will note that he was replying to what I had explained, and not directly to the policy itself.

Decisions that affect psychosocial participants like this must not be made without carefully considering the harm that will be caused to this population.

When considering whether to let this bill pass, can you please carefully consider what is the amount of harm to people with disability that you are willing to tolerate, and how many deaths you can accept, for the sake of reducing costs to the budget? I am hoping your answer is none.

For those who still want to weigh economic costs and benefits over the human aspects, please also consider that the harm that will be done will also not be without financial cost to the scheme or the “taxpayer”. Because by reducing supports to participants and causing harm (and this goes for all participants, regardless of their disability), there will be increased costs in other areas of the economy.

For those who are more interested in the dollar amount in the budget, please consider the bigger picture.

The Productivity Commission 2020, Mental Health, Report no. 95, Canberra, includes a section on the cost of mental ill-health and suicide. On page 149 it states the following:

The cost of mental ill-health and suicide is large and pervasive … It is not necessary to quantify the cost of mental ill-health and suicide to know that it results in damaging and costly effects on the lives of individuals, their families and friends, business, and the community. Nevertheless, our aggregate community-wide estimate of the costs of mental ill-health and suicide, based on the data available, provide valuable insights. In particular, it is a motivating force to develop a person-centred vision for Australia’s mental health system, to improve the lives of those with mental ill-health and their families and carers.

In 2018-19, the annual cost to the economy of mental ill-health and suicide in Australia was estimated to be up to $70 billion.

Direct expenditure on mental healthcare and support services is in the order of $16 billion.

The annual cost of lower economic participation and lost productivity was up to $39 billion.

The total annual cost of replacing the support provided by carers of those with mental illness was about $15 billion. The cost of disability and premature death due to mental illness, suicide and self-inflicted injury was equivalent to a further $151 billion per year.

The social and emotional costs of lower social participation or stigma associated with mental ill-health are considered qualitatively.

Increased power for the CEO to Request Information. Giving the CEO such power to request information as described in the new legislation opens the door to the possibility of abuse by systems that are supposed to look after the vulnerable. Giving the CEO the ability to remove participants from the scheme if they do not submit the requested information within 90 days is alarming, and should not be allowed.

Abuse of power when requesting records of victim/survivors of abuse The NDIA has been using the subpoenaing of medical records to punish people at AAT for years. It is used to draw out proceedings and to bully. It is done to increase the chances the participant will give up. There are several instances of lawyers representing the NDIA in AAT proceedings asking for medical records from specialists or sources unrelated to the participant or prospective participants, appeal. At times the AAT Member has rightly denied this.

Some people in the public may think that if you are asking for help for a disability then the NDIA should have every right to access all your records. However, the harm that can be done by this can be seen in recent instances that have been exposed in the media, where the NDIA has subpoenaed files that include records of a participant’s sexual assault. When called out on this, instead of apologising for the over-reach, they justified it saying it was relevant.

I have recently been accepted as a participant. I spent a significant amount of time during the application process considering what I would do if denied, which has a lot to do with my medical records and any information about abuse that might be contained in them. The thought of going through an internal review and the AAT process if needed, knowing that the NDIA does not behave as model litigants and does subpoena participant’s records, had made me afraid of this possibility, and I was already thinking ahead that I would not have been able to cope with that happening.

It can take years of trust with a health professional to disclose abuse. Privacy of participants should not be violated by the NDIA as a way to bully participants into giving up their human rights. No one should be afraid to ask for help, because they are afraid their trauma could be used as leverage against them. While the government may promise this won’t happen, that doesn’t carry much weight given they already do this. Enshrining their right to do this in law, should be stopped.

To give the CEO even greater powers in this respect, when they are already overstepping the privacy and rights of participants in this way, is unconscionable. The legislation needs to have safeguards for participant’s privacy, especially in relation to victim/survivors of abuse. It should be noted that people within the disability community are many times more likely to have been abused during their lifetime than non-disabled people.

There is a very real risk of harm to already vulnerable people if this Bill is not stopped. The use of threats to demand participant’s sensitive information should cease, and not be further enabled, and protection should be placed in the legislation.

Misinformation from the use of historical/out-of-date records With requests for historical medical records comes the risk of misinformation, which could be used to deny Access or Supports for disabled people. Some conditions can take years, and many doctors, to come to reach a correct diagnosis. If it takes 10 doctors to find one that is knowledgeable about a disability (which it does for some disabilities), that means the first 9 got it wrong. Historical records also do not give the full picture, as

Disability can change over time, even if reports were accurate at the time they were written. To request and use historical records against people is just wrong. There should be safeguards against this happening.

Assessments

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’ 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.

That the Government wants to introduce Independent Assessments 2.0 is beyond disappointing. The legislation as proposed in the new bill should not be passed, particularly when there is no transparency around how assessments will work.

Respect for Medical and Allied Health Professionals

The reports of professionals that are treating the participant, or that have been sought out for the purposes of assessment, should be trusted and their qualifications given the respect that they deserve. If there are points not covered, then questions should be directed to the professional, they should not be requiring participants to hand over their medical records. Participants should also not be forced to interact with professionals not of their choosing. To do so shows a distinct lack of understanding around trauma.

Current practices by the NDIA during planning, and also by their lawyers during appeals, show a complete disregard for professionals, and people with disability. They request thousands of dollars worth of reports, that are time-consuming and can be distressing, then don’t read them, or NDIA staff with no relevant qualifications discount them in preference to their box-ticking procedures and guidelines, that often run counter to the legislation.

I am writing to ask you to STOP the changes to the NDIS Act (2013) going through until due diligence around Commonwealth government responsibility to disabled people, has occurred.

Thank you.