NDIA Accountability Project

Advocacy for mental health consumer wellbeing within NDIS reform

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National Mental Health

Consumer & Carer Forum 0

Submission to the Senate Standing Committees on Community Affairs Inquiry into the National Disability Insurance Scheme Amendment (Getting the NDS Back on Track No. 1) Bill 2024 [Provisions]

17 May 2024

Submission from National Mental Health Consumer and Carer Forum

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Date: 17 May 2024

The National Mental Health Consumer and Carer Forum (NMHCCF) is pleased to provide the following submission to the Australian Government Department of Social Services NDIS Provider and Worker Registration Taskforce.

The NMHCCF is a combined national voice for mental health consumers and carers. We listen, learn, influence and advocate in matters of mental health reform.

The NMHCCF was established in 2002 by the Australian Health Ministers’ Advisory Council. It has historically been funded through contributions from each state and territory government, which have now (FY23-24 onwards) been amalgamated and are afforded by the Australian Government Department of Health and Aged Care. It is currently auspiced by Mental Health Australia.

NMHCCF members represent mental health consumers and carers on many national bodies, such as government committees and advisory groups, professional bodies, and other consultative forums and events.

Members use their lived experience, understanding of the mental health system and communication skills to advocate and promote the issues and concerns of consumers and carers.

The NMHCCF chose to respond to this submission opportunity as Australia’s national voice representing the Lived Living Experience of mental ill-health, and the Disability Representative Organisation (DRO) and Disability Representative and Carer Organisation (DRCO) for psychosocial disability in Australia. The NMHCCF is committed to working with the Government throughout the reform of the NDIS by informing and supporting each step.

We would be happy to provide any further information to support the issues raised in this submission. Please contact the NMHCCF via the Secretariat at nmhccf@mhaustralia.org or 02 6285 3100.

Yours sincerely,

Kerry Hawkins Helen Day Carer Co-Chair Consumer Co-Chair

Introduction

The National Mental Health Carer and Consumer Forum (NMHCCF) welcomes the opportunity to contribute to the Senate Standing Committees on Community Affairs Inquiry into the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 [Provisions] (the Bill). This Bill marks only the beginning of a long-awaited and significant tranche of legislative changes in response to the Independent Review into the National Disability Insurance Scheme (NDIS Review).

The NMHCCF believes it is important to respond to the proposed amendment and its impacts on people with lived and living experience of psychosocial disability and their carers, family, and kin, as too often policy and legislation enacted within the disability space will overlook or misrepresent psychosocial disability. Being the peak voice for mental health consumers and carers in Australia and with NMHCCF members representing lived experience of mental health challenges and service engagement throughout the country, the NMHCCF speaks as an authority on psychosocial disability across the Australian landscape.

The NMHCCF commend the Government for taking an ambitious approach to reforming the NDIS and endeavours to aid and support the Government throughout this process. The inclusion of psychosocial disability in the NDIS has been seen as a significant development to assist people have meaningful lives in the community. The importance of choice and control, a recovery-orientation, life-long support and the successes that can be achieved through a well-functioning NDIS cannot be underestimated for people with psychosocial disability.

This submission will discuss what impact the Bill will have on the experiences of NDIS participants with lived experience of psychosocial disability and their carers, family and kin. Further, the NMHCCF notes that this Bill is the first of several upcoming amendments to the NDIS Act 2013 (NDIS Act) which are intended to improve the experiences of NDIS participants. In recognition of this, this submission will also address the approach to NDIS and broader disability reform currently being taken by the Government.

The NMHCCF is supportive of the principles of the changes to the NDIS Act that have been included within the Bill. This includes amending the legislation to better facilitate a whole of person approach in determining participant support needs, improving the quality of services and safeguards, and reforming participant pathways onto the NDIS. However, the NMHCCF are concerned that the Bill lacks an understanding of psychosocial disability and the experiences of people with lived experience. Further, the NMHCCF is disappointed that greater efforts to consult on the Bill during its development were not pursued by Government.

Recommendations

  1. The NMHCCF recommends that the definition of NDIS Supports within the Bill be removed, and that Government undertake broader consultation on the proposed definition and its impact with people with lived and living experience of various disabilities, including psychosocial. Consultative efforts should include scenario testing.

  2. As done within the Official Statement on the NDIS Review, the NMHCCF recommend that nationally consistent definitions of the terms ‘psychosocial disability’ and ‘psychosocial disability service provider’ be established which follows those provided in the NMHCCF’s position statement. These definitions must precede the current proposed legislative changes.

  3. The NMHCCF recommends the increased Ministerial powers introduced in the Bill be removed. If they are not removed, the NMHCCF recommends additional provisions be included where the Minister is allowed to make determinations that stipulates consultation and engagement with the sector must be undertaken.

  4. The NMHCCF suggests that the Australian Government broaden its scope of the health workforce capability recommendations to include psychosocial disability upon implementation, and that the Workforce Strategy be followed as a guide for implementation. As a caveat, these workforce recommendations are specifically targeted to benefit people with psychosocial disability and may not be suitable for people with co-occurring disabilities.

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Themes

Many of the issues and themes identified by the NMHCCF about this Bill were discussed in the NMHCCF Official Statement on the NDIS Review.

Introducing ‘NDIS Supports’

The NMHCCF recognises the need to revise the legislative framework that denotes what and how supports are accessed through the NDIS. The NMHCCF also support transitioning to terminology such as ‘NDIS Support’, as part of the ongoing reform. However, the Bill goes beyond introducing an amended definition for what can be deemed a NDIS support and includes examples of things that would not classify as a NDIS support. The NMHCCF believe that this inclusion of these distinctions contradicts the principles that underpin the purpose of the NDIS.

One of the fundamental principles of the NDIS is participant choice and control. The origin of this can be traced back to the Social Model of Disability and the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Yet, the explicit exclusion of items within the definition of NDIS Supports removes an individual’s autonomy when determining the support they need. No two people with disability can be assumed to have the same support needs. The environment in which they live, ability to access informal supports, individual means, and personal preference all impact how a person lives their life and the choices they make. The NMHCCF recognise that there must be limits to what is a NDIS support however they do not agree that these limits dictate what is not a support.

Recommendation

The NMHCCF recommends that the definition of NDIS Supports within the Bill be removed, and that Government undertake broader consultation on the proposed definition and its impact with people with lived and living experience of various disabilities, including psychosocial. Consultative efforts should include scenario testing.

Understanding psychosocial disability

The NMHCCF engaged extensively with the NDIS Review, throughout this engagement, it was made evident that improved outcomes for participants with psychosocial disability cannot be achieved without a common and consistent understanding of psychosocial supports. Whilst the NMHCCF recognises the intent of Government to begin reform sooner rather than later, The NMHCCF believes there has been a mis-prioritisation of initiatives, and the introduction of the Bill without a sound understanding of psychosocial disability, will adversely affect the current and future success of the Scheme and participant outcomes.

Many people living with primary psychosocial disability report that the NDIS lacks an understanding of their needs. This is particularly pronounced for populations with additional contextual needs such as the LGBTIQA+ community, those from culturally and linguistically

diverse communities, rural and remote areas and people who experience co-occurring

disability or chronic illness. Processes and policies that affect people with psychosocial disability must be founded on the principles of being conceptually and culturally competent to deliver on the needs of those living with primary psychosocial disability. To address this issue, the NMHCCF have long called for greater consistency in defining what psychosocial disability is.

The NMHCCF notes various aspects of the Bill are intended to be mechanisms under which recommendations in the NDIS Review about psychosocial disability are fulfilled. Whilst these changes may be necessary at a point in time, the NMHCCF urges Government to introduce greater consistency in defining psychosocial disability before changing the processes and frameworks in which the NDIS operates.

Recommendation As done within the Official Statement on the NDIS Review, the NMHCCF recommend that nationally consistent definitions of the terms ‘psychosocial disability’ and ‘psychosocial disability service provider’ be established which follows those provided in the NMHCCF’s position statement. These definitions must precede the current proposed legislative changes.

Informed engagement The NMHCCF, like many others within the disability sector, have requested that Government provide more information and insight into the process, approach, and intent of changes before commencing legislative reform. Examples of requested information include a timeline for transition, proposed funding models and eligibility frameworks for a new pathway. Yet, the process adopted to develop and introduce this Bill suggests that it is not the intent of Government to undertake communal consultation before legislative reform.

The Bill makes possible a range of further changes that the Government has indicated will be consulted on and implemented at a later date. The NMHCCF acknowledges the complexity that can be associated with legislative change and understands why the Government has pursued increased powers for the Minister for the NDIS (the Minister), instead of requesting each change individually. However, NMHCCF believes that the well-being of participants and the long-term sustainability of the NDIS should not be jeopardised in pursuit of reduced red tape.

At present, the NDIS Act 2013 allows the Minister to make a range of determinations about the Scheme which include the development of NDIS Rules. Under the current Act, Ministerial decisions must be guided by the general principles of the Act listed in Part 2 – section 4. One of the principles states: “People with disability are central to the National Disability Insurance Scheme and should be included in a co-design capacity.“ Yet, despite the inclusion of this principle, co-design and the consultation approach taken for this Bill was nearly non-existent.

The Bill introduces substantial new powers for the Minister which are intended to shorten the timeframe of reform, yet the introduction of the Bill has provided little assurance that the disability sector will be consulted during future decision-making processes. Whilst the additional powers are also subject to the guiding principles, the NMHCCF questions whether, once again, future changes will not provide an opportunity for the voices of lived experiences participants of all kinds, their carers, family and kin, to be listened to and embedded in the reform.

The NMHCCF noted that the introduction of an early intervention pathway for people with psychosocial disability, requirements for needs assessments, and a new budget framework are included as Ministerial determinations within the Bill. Many of these changes were recommendations within the NDIS Review, however that does not mean they have been wholly welcomed. There is still a strong need for co-design around any changes with people with lived experience of psychosocial disability and their carers, family, and kin. The Lived Experience community of psychosocial disability is distrustful of the NDIS Review recommendations in that they predominantly appear to favour the recommendations submitted by the large psychosocial service providers in their APA NDIS Review submission. This distrust is still present and will continue if mental health consumers and carers are not leading the implementation process.

Whilst the Government has been clear in communicating its intent to undertake reform in partnership with people with disability and the community, there can be no assurance that any future Minister will share values with the NDIS and those with lived experience, meaning that future changes. As these increased Ministerial changes will be provided to any current and future Minister for the NDIS, the NMHCCF questions how Government can ensure that any changes won’t be affected by the politics of the day.

Recommendation The NMHCCF recommends the increased Ministerial powers introduced in the Bill be removed. If they are not removed, the NMHCCF recommends additional provisions be included where the Minister is allowed to make determinations that stipulate consultation and engagement with the sector must be undertaken.

Participant pathways

The NMHCCF supports the introduction of new participant pathways that are targeted to address the needs of people lived with primary psychosocial disability. However, the operation and success of the new pathways, as defined within the NDIS Review, are greatly dependent on factors external to the NDIS.

The Review outlines the importance of evidence-based early intervention services and specific pathways for people with a psychosocial disability entering the Scheme. The NMHCCF has previously stated that the nature of psychosocial disability and its formation over an extended

period contradicts the relevance of an early intervention pathway, particularly within the Scheme. Early intervention pathways should be implemented at a community level, with the Scheme providing support for more complex needs. Where early intervention pathways are enabled in the community level, the quality and reliability of supports cannot be assured due to ongoing workforce shortages.

A stronger, more equitable, and improved workforce is a necessity to improve psychosocial outcomes and recovery, which includes supporting the mental health peer workforce and the many benefits it provides. The mental health peer workforce is also able to espouse and uphold the values and principles of psychosocial recovery. The Department of Health and Aged Care has established the National Mental Health Workforce Strategy 2022-2032, which is a roadmap to building and sustaining an appropriate mental health workforce across Australia.

This becomes a further issue as the proposed reasonable and necessary budget framework is intended to align with the original intent of the NDIS to support people with permanent and significant disability as part of a larger landscape of supports outside of the NDIS. It is well known that this larger landscape does not currently exist, and it will take time to build. It is also dependent on workforce availability to meet the needs of people accessing supports outside the Scheme.

Recommendation The NMHCCF suggests that the Australian Government broaden its scope of the health workforce capability recommendations to include psychosocial disability upon implementation and that the Workforce Strategy be followed as a guide for implementation. As a caveat, these workforce recommendations are specifically targeted to benefit people with psychosocial disability and may not be suitable for people with co-occurring disabilities.

Whole-of Person Approach The importance and impact of viewing disability supports through a whole-of-person approach has become increasingly known. This approach is welcomed and encouraged by the NMHCCF as this approach, when done correctly, can accept that people with disability often have co-occurring disabilities and that treatment and recovery are led by the person with disability, in partnership with their carers, family and kin, and can require coordinated care teams. Unfortunately, whilst the Bill intends to enable avenues for this approach to operate within the NDIS, many of the proposed changes will do the opposite.

Most changes reject a whole-of-person approach by introducing stringent guidelines for different processes and protocols that do not acknowledge life changes. The NMHCCF believes this is the case for the changes related to plan management and needs assessments that have been included in the Bill. Most notably, the changes fail to ensure that participant

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plans will be determined in a way that ensures the wellbeing of participants is prioritised, instead of the cost of the plan.

As noted earlier, the new budget framework is intended to align with the original intent of the NDIS to support people with permanent and significant disability as part of a larger landscape of supports outside of the NDIS. Yet supports outside the NDIS currently barely exist. If participant plans moving forward are determined using the assumption that certain supports should be accessible to participants and their informal supports, many individuals will lose access to supports and services they need. Provisions must be included within the Bill that ensure participant well-being is the primary consideration through assessment and planning.