Australian Psychosocial Disability Collective submission regarding the (Getting the NDIS Back on Track No. 1) Bill 2024 to the Community Affairs Legislation Committee inquiry. May 2024.

Psychosocial disability is real disability and should be treated with equal rights under the NDIS Act

The Australian Psychosocial Disability Collective (APDC) believes the NDIS Amendment Bill 2024 sets the scene for manifold discrimination toward people with psychosocial disability.

Following the 12-month NDIS Review, a new Bill (Getting the NDIS back on track 2024) has been introduced into parliament which includes substantial changes to how the NDIS will operate in future. The NDIS Bill amendments represent a fundamental redesign of many aspects of the NDIS, and are the most significant changes to the scheme since it started more than a decade ago.

Many of the NDIS’s values and principles based on a social model of disability, also seem likely to be damaged in the name of budgetary responsibility and sustainability.

Changes to the National Disability Insurance Scheme framed by the legislation would have severe adverse implications for people with psychosocial disabilities, both existing participants and new applicants to the scheme. These are expected to include access, eligibility, assessments, plan budgeting, defined supports, narrowing the range and depth of supports to be provided in an NDIS plan, and making the scheme less personalised and more generic. Participants would lose a large degree of the NDIS’s key guiding principle of choice and control.

More than 60,000 people with psychosocial disability have been receiving life-changing, practical and meaningful support through the NDIS. The scheme has undoubtedly saved many lives.

The APDC and its mission

We wish to introduce ourselves as the Australian Psychosocial Disability Collective, a grassroots lived-experience systemic advocacy group campaigning to protect the rights of people with psychosocial disability in the context of the NDIS. We are a group of first-hand NDIS participants, who experience daily severe and enduring struggles of psychosocial disability, and we are facilitated by a lived experience advocate-ally.

We are appealing for the Community Affairs Legislative Committee to listen to our voice in our struggle to maintain and enhance the important role of psychosocial support and care in NDIS and prevent harmful changes in this area.

We are calling for the Government and the National Disability Insurance Agency to follow up on promises to engage transparently and publicly with the disability community in genuine co-design processes for any changes to the NDIS, at every stage of the reform processes.

Co-design should be written into the Legislation. Co-design with the disability community was meant to be at the heart of reforms to the NDIS. This promise appears to have

Sweeping changes to the NDIS

The NDIS Bill amendments will require significant numbers of new psychosocial NDIS participants to be placed onto a yet-to-be-designed and untested psychosocial disability early intervention pathway with a narrower range of specified supports and practices.

At a wider level, yet-to-be-established “foundational supports,” run at state and territory levels by block-funded large NGOs promoting the notion of “recovery-based” support services, have the potential to further limit access to the NDIS for people with genuine and substantial needs that will be unable to be met under these service models. Under the legislation and coming rules some present participants may be diverted to foundational supports and/or denied access to the NDIS altogether.

The introduction of foundational supports is said to be a means to address burgeoning needs outside the NDIS system. While the Minister has stated that present participants would keep their NDIS plans, we are concerned this is only in the immediate term and that current psychosocial participants will be targeted again in a year or two.

We are alarmed that psychosocial disability is being subjected to discrimination and downgrading in the NDIS system. This is most prominently visible in the proposed introduction of an early intervention pathway for all new NDIS participants with a psychosocial disability, thus creating policy segregation whereby the level and type of support provided to participants with a psychosocial disability is markedly separate from that provided to other disabilities within the NDIS.

This is an incursion on our human rights under the United Nations Convention on the Rights of People with Disabilities (UNCRPD), of equal rights to live and participate in the community. We maintain that psychosocial disability is real and permanent disability for the purposes of the present NDIS eligibility criteria and deserves equal rights under the NDIS.

While the Bill does not specifically refer to psychosocial disability-related changes, it refers to “classes” of participants and classes of supports. Further tranches of legislation are supposedly to come. Creating artificial and ill-informed classifications of types and levels of disability is a marked departure from the person-centred support currently provided by the NDIS. It’s the APDC’s belief that the classification of participants and supports is a recipe for great harm for people with a psychosocial disability who already have experienced significant and ongoing trauma from not having their needs understood by health and disability systems.

Some changes will be made under the new rule-making powers of the Minister and the NDIA CEO. The rules will include NDIS eligibility criteria, “Support Needs Assessment,” assessment mechanisms, NDIS plan budget formulas with “flexible” funding models, defined supports, “black listed or white listed” support types within the NDIS, and more. This places enormous concentrations of power into the hands of the Minister and the CEO, with many

important changes relegated to the rules and subject to minimal parliamentary oversight or

public scrutiny.

Likely implications for psychosocial disability of such shrouded implementation methods are indicated in the context of public statements by the Minister and senior members of the Review referring to “people with mental health challenges” – when psychosocial disability is often severe, complex, multi-layered and enduring. Claims that support for participants would be strengthened by a focus on “recovery” lack credibility and are disingenuous to those with lived experience of struggling each day with psychosocial disability.

Key concerns about the Bill include:

All existing NDIS participants will be subject to mandatory review of eligibility and types and levels of supports. This is likely to lead to widespread fear and distress, with high levels of negative impact on mental health, and risks to health and wellbeing.
Existing NDIS participants determined by the NDIA CEO to have their plans reduced or removed from the scheme after a Support Needs Assessment will no longer have recourse to internal or external review. This will also apply to new applicants in what is already a difficult, complex, and bureaucratic system. Nuanced aspects of psychosocial disability, such as complex and multiple disabilities, will be even harder to get across.
The new “Support Needs Assessment” will not provide an appropriate mechanism to determine the funding and support needs of people with psychosocial disability. Separating functional and support needs assessments is a regressive step, as an individual’s ‘whole of person’ disability support needs cannot be accurately gauged without a thorough understanding of a person’s functional limitations.
The APDC is concerned about the extraordinary power granted to the NDIA CEO and delegates to determine plan budgets within the introduced Bill with so little detail about how this process will occur. The legislation must clearly define what ‘Assessment of participant’s need’ means and how this assessment will occur.
Budgeting for NDIS plans, described as “flexible” funding, will take place in a virtual black box. Line-by-line itemised funding will be replaced by amalgamated figures based on yet-to-be-designed methods under a label of “reasonable and necessary budgets,” a phrase that originally referred to “reasonable and necessary supports.” This change of emphasis is expected to actually reduce flexibility and underpin funding cuts for the NDIS.
The introduction of a new, narrower definition of what constitutes NDIS support under Section 10 amendments has considerable implications for people with a psychosocial disability. Under more stringent criteria under yet-to-be-determined NDIS rules, it may exclude existing supports that participants find highly beneficial to their well-being and ability to function.

Towards a better understanding of psychosocial disability

Psychosocial disability is often misunderstood in the NDIS area and the wider community. Some seem to regard it as a “lesser” or milder disability, but this is far from true.

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Psychosocial disability can be defined as the often severe and enduring consequences of mental ill hhealth, combined with other social, economic, cultural, and environmental factors, together with co- occurring disabilities and health conditions, the effects of trauma and stigma, and other complex issues.

It is important that psychosocial disability not be conflated with mental ill health in the NDIS context because mental ill health is only one part of a much broader picture - both in terms of lived experience and the combined severity and pervasiveness of the impairments.

Psychosocial disability is complex, multi-factorial, and affects people in varied ways. It impacts virtually every aspect of life; including employment, education, relationships, social interaction, community participation, cognition, communication, self-care, mental and emotional wellbeing, and maintaining energy and motivation. Psychosocial disability tends to be linked to co-occurring serious physical health conditions and earlier mortality. Such problems, exacerbated by stigma and discrimination, contribute to high levels of disadvantage, including poverty, housing stress and homelessness, social isolation, food insecurity, disenfranchisement, substance issues and, sadly, a high incidence of suicide compared to the population averages.

Many people with psychosocial disability also say they were poorly served, harmed and even had disabilities caused by mental health treatment and “support” systems. The breadth and depth of needed supports, provided under the NDIS are simply unavailable in mental health services. Many participants experience the clinical mental health system, grounded in a medication-based medical model, as harmful, traumatising, denuding of hope, coercive, judgemental, stigmatising, and systemically violent.

Reaching out to NDIS Minister Mr Bill Shorten with an Open Letter

The Australian Psychosocial Disability Collective has written an Open Letter/ Petition to NDIS Minister Mr Bill Shorten, asking him to protect the rights of people with psychosocial disability in the NDIS.

The Open Letter calls for the NDIS to fully maintain and further develop services for people with psychosocial disability under the scheme, with genuine co-design with participants on any changes. 4010 people have so far signed the petition on Change.org.

The letter said:

“We are concerned about the impact changes will have on our lives; how you will make the decisions once support from the NDIS and who does not; and the nature of the services, if any, that will be offered to us as alternatives. We are seeking that the debate about changes to NDIS eligibility for people with psychosocial disability be undertaken in a transparent and public manner.”

We, the Australian Psychosocial Disability Collective, personally gave evidence to the Independent Review Panel on the NDIS and made a submission written collaboratively with a group of Occupational Therapists. Our recommendations were apparently ignored; instead, powerful mental health lobby groups had their (very harmful) recommendations taken up.

Recovery-based models are inappropriate and add insult to injury

Organisations proposing so-called “recovery-based” NDIS service models are, in many ways, promoting an inappropriate and paradoxical approach in the NDIS context. When

people are assessed as having severe and permanent disability, qualifying them for the scheme, recovery is complex at best and virtually intractable in many instances. So many of us have been trying our hearts out for years, or even decades, to be well enough even to survive, let alone function. Sheer day-to-day maintenance is often a significant achievement.

Recovery is a notion that lived experience advocates often describe as personal recovery, in which a person can work towards more control over their life circumstances and trajectories through a range of inputs and supports. It is not necessarily about clinical recovery, a cessation of symptoms, or alleviating the severe life challenges we face.

Since the late 1990s, the mental health consumer/survivor/lived experience movement has been leading discussions about the concept of recovery in mental health in holistic and empowering ways, which would seek to tailor supports to participant’s needs and aspirations and follow the person into their lives in the community.

Many advocates say service providers have co-opted the hard-won concept of recovery over time with superficial centre-based methods, such as blanket Recovery College pedagogies or “coaching” approaches. There is a clear danger this trend could be replicated in the NDIS to the detriment of participants. The best and most realistic version of recovery may be measured in terms of surviving and living our lives in the best ways possible.

Where support services have over-blown or even coercive presumptions around recovery for participants with psychosocial disability, this can erode the provision of sustained and person-centred supports and cause more harm or even trauma. These supports are supposed to be informed by the expressed needs of participants, under the guiding principles of maximising choice and control by participants, and our right to lead “an ordinary life”.

There is a need for ongoing, trustworthy, holistic and individualised services based on a social model of disability. This means services that support, empower and resource participants in their life in the community, according to their needs and wants - with an emphasis on the choice and control that was a key imperative of the NDIS’s original design.

NDIS supports, when working well, can help the person with daily living support and practical tasks, such as housework and shopping, meal preparation, transport, attending appointments, meeting with friends or family, participating in groups and activities in the community, managing from day to day, and providing personal support in difficult times (including overnight when required). There are also capacity-building supports available through the NDIS, and these, too, have been life-changing for many psychosocial participants – enabling access to effective and efficacious services that are simply not available through the mental health system.

New pathways in the NDIS area – Where do they lead?

We reject the assertions of the NDIS review panel report (based on influential mental health lobby group recommendations), which assumes most psychosocial disability can be addressed by an early intervention pathway that will somehow lessen the impact of this disability on the lives of most participants. Psychosocial disability is real disability and should be treated with equal rights under the NDIS Act.

Reliance on delegated legislation (Rules and Determinations)

The NDIS Amendment Bill poses problems to the disability community with its lack of detail and transparency, with many important changes relegated to yet-to-be-written Rules and Determinations. This seems especially the situation with psychosocial disability.

We do not agree with the reliance on delegated legislation where The Minister will be given the power to decide on many fundamental things in the NDIS- and with very limited oversight by Parliament or public scrutiny. For example, many Rules and Determinations will not need to be passed by parliament.

We do not agree with the Minister having the power to make a range of legislative instruments (Rules and Determinations) - at some unknown future date- that will determine many fundamental things in the NDIS and to the lives of people with disabilities.

Some examples of these are:

The details about access and eligibility to the NDIS.
Method for calculating budgets for individual NDIS plans.
Types of supports that the NDIS will fund. (Defined supports.)
Decision-making processes about disability requirements.
Decision-making processes about early intervention requirements.
Decision-making processes about Foundational Supports.
How Support Needs assessments will be undertaken?
Who will conduct assessments, and what skills, training and education should they have for this exacting role?
Can treating professionals write reports, and who will pay?

We say: Write these in the legislation – not the rules.

Delegated legislation will be fundamental to the way the NDIS will work. Delegated legislation will have a huge impact on people with disabilities - both existing participants and new applicants. The content of these Rules will be significant for people with disability.

It is essential that the government does not pass this Bill and, at the very least, begin to honour their promise of co-design with people with disability - and to meet with the APDC about psychosocial disability.

The Minister “may” consult before making a legislative instrument, but the legislative instrument will be valid and enforceable even if the Minister does not consult. Yet the Government said they were committed to developing this Delegated Legislation with people with disability. Do not make decisions without us. Nothing about Us without Us!

We do not want to return to draconian days when people with disabilities had no rights and no say about their lives - and were forced into custodial ‘care’ - or neglect. This is unjust and humane, and history proves this uses far more long-term resources.

Access to the NDIS may be restricted

Access to the NDIS may be restricted ( Section 34 ) Some supports will be provided by the NDIS; and other supports in another system (Section 10)

Impact of Assessments on Participants

The new Bill clearly states that ALL existing participants will have to undergo a Support Needs Assessment. This can be very distressing and feels like a threat to our well-being, with a possible loss of support—even if we don’t happen to lose funding. A co-designed plan needs to be developed, including how to mitigate risk and impact.
Trauma and even tragedies arising from Robo-Debt are illustrative of what can happen.

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The new Bill is threatening to dismantle the NDIS social model of disability. The social model of disability is fundamental for a sustainable and ethical NDIS – and to our rights as Australian citizens.

The Australian government should not lose sight that the NDIS is underpinned by the UNCPRD.

Yours sincerely,

Members of the Australian Psychosocial Disability Collective.