Dear Senate Community Affairs Legislation Committee,

I am writing to express my serious concerns about the National Disability Insurance

Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024.

As a person living with Psychosocial Disability and a NDIS participant for over 7 years, I

believe this Bill could have a detrimental impact on the lives of people with disability and undermine the original intent of the NDIS.

I describe myself as a survivor living with a complex history of trauma from across my

lifespan, including family violence, childhood sexual abuse and physical and sexual assault as an adult. Every aspect of my life has been impacted including education, work, career, income and financial status, family and interpersonal relationships.

I have been accessing the mental health system since I was 18 and I am now in my mid 50’s, having been on a DSP for decades. Many psychosocial participants I know have

been harmed by the public mental health system. The NDIS empowered me to escape the broken state funded public mental health system, one that often failed and re- traumatised me due to lacking truly competent trauma-informed care and support.

The NDIS has allowed me to have choice and control over finding competent trauma informed supports, rather than the mental health system imposing services upon me because it thinks it knows what is best for me. Along with many Psychosocial participants I know, the NDIS helped me gain personal agency over my supports, enabling me to have a more meaningful life, for which I am grateful.

The thought of being forced into an early intervention pathway or Foundational Supports just fills me with dread. I am not saying that will happen, but there are suggestions that participants may be reassessed at some future point and may have their status revoked. This is of particular concern to me. I refuse to go back to a system that harmed me and erased my choice and control. I fear being forced back into using such services and would rather disengage from services entirely than have that happen.

personal autonomy is of paramount importance to my well-being.

No-one disagrees with the concept that there should be support services outside of the

NDIS, for those with less chronic disability. However, can we stop making out people with psychosocial disability just have not been trying hard enough or have not been

connected to the right service. That somehow, we can be fixed. It is insulting, hurtful and stigmatising rhetoric and above all incredibly ableist.

While there are countless things to be concerned about, I am particularly worried about

the following aspects of the Bill:

1. The shift from 'reasonable and necessary supports' to 'reasonable and

  necessary budgets'. I fear this change could lead to arbitrary limits on the
  supports people can access, rather than focusing on what each individual

   actually needs to live an ordinary life. People with Disability should not be put into
  boxes and subjected to algorithms, but instead be treated as a whole person,
   including whether we have multiple disabilities and intersectional attributes.

2. The tighter definition of what supports the NDIS will fund. I am concerned

    this definition is too narrow and could exclude vital supports that people with
    disability rely on to participate in the community and pursue their goals.

  Recently I have been alarmed and seriously distressed by the NDIS Minister Bill
  Shorten saying in Parliament and elsewhere, that he intends to ban Somatic
  Therapy and equating it with NDIS participants spending funds on

   cryptocurrency, crystal therapy, clairvoyants and tarot card readings etc.

  Somatic Therapy is an important trauma-informed therapy modality that is based

    in neuroscience and highly regarded in the trauma field. It is practiced by
   registered allied mental health professionals such as psychologists, social

  workers, counsellors etc. Somatic Therapy is recognised by the Psychotherapy
 and Counselling Federation of Australia (PACFA) and to somehow equate it as

being obscure or on the fringe is misinformed.

While I have never found a magical cure to rid me of my psychosocial disability,

Somatic Therapy has helped me understand how trauma impacts my mind and body. My c-PTSD symptoms physically manifest in my body, which has caused

me immense distress throughout my adult life. Somatic Therapy has been a lifesaver for me as it helps me make sense of how trauma is stored in the body

and physically manifests when triggered. The NDIS funding allowed me to see a psychologist that uses Somatic Therapy to help me build capacity to manage my daily struggles and attempt to lead a meaningful life. I would be devastated to

lose this trauma informed support as it enables me to cope with the chronic and disabling symptoms I live with.

It is essential that NDIS supports such as Equine Therapy, which often is provided by practitioners trained in Somatic Therapy are also not banned. I’ve been able to try equine therapy and it was amazing in terms of building capacity around self-regulation and engaging in social connection with both the horse and the humans around me. We should not dismiss such things outright, based on

making uninformed assumptions as to their usefulness, without understanding the benefits.

I think it is outrageous that the Minister dared to even suggest Somatic Therapy be banned. This goes to the point of why it is extremely dangerous to allow the Minister of the day or the NDIA CEO to make arbitrary and reactionary decisions

as to the types of supports that are considered acceptable or not, without evidence or co-design. Basing opposition to a support due to the vibe of the thing

or misinformed public sentiment is not evidenced based or sound reasoning and needs to be prevented. I realise what I’ve written is wordy but this issue is

immensely important to me. As a NDIS Psychosocial participant, I have felt extremely distressed by Minister Shorten attacking a support that I value highly and has given me a reason to live.

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3. The increased powers for the NDIA to require people to undergo assessments or provide information, with the threat of plans being suspended or revoked for non-compliance. This fails to recognise the many barriers people with disability can face in engaging with bureaucratic processes, especially if they are experiencing a crisis or have complex needs.

It also fails to acknowledge how terrifying and distressing it can be for people with disability that have complex histories of trauma to be able to engage with someone they do not know and whom they do not feel safe with. It is extremely distressing having to tell your story over and over again, especially when it involves abuse. As we know from the Disability Royal Commission people with disability have experienced high rates of abuse and trauma. This newly yet to be defined model of assessment, is likely to lead to very bad outcomes in terms of understanding a participant’s needs.

We saw with the death of David Harris that people with psychosocial disability can be quite vulnerable. Revoking someone’s status without thorough understanding of what is going on will cause harm.

4. The potential for Policy Segregation and Discrimination against People with Psychosocial Disability is seriously concerning. Despite the protestations of the NDIS Minister that People with Psychosocial Disability will remain on the scheme, it is clear that we’ve been targeted both in the Review process and in the writing of the NDIS Bill. God knows what the rules and guidelines will contain and what that will mean for us.

Creating classes of participant within the Bill is a red flag to many of us, because it signals that there is an intent to categorise people with disability into various groups of the worthy and unworthy. The messaging has been clear that the Minister and the NDIS Review Panel wish to divert People with Psychosocial Disability away from the scheme. This is discrimination and is an abject failure in policy to recognise the significant disability that people with psychosocial

As a person with a chronic and permanent Psychosocial Disability I demand to be treated equally with dignity and respect and have access to a social model of disability just like every other person with a disability.

I do not want people, including the Minister, NDIA CEO, NDIS Review panel members and the Mental Health industry lobby, dictating to me what they think is best for me.

The pervasiveness of the NDIS recovery-oriented framework has misled people into thinking many of us will be cured of mental illness and not need the NDIS.

This is so far from reality it is beyond frustrating, given many of us have experienced psychosocial disability for decades despite accessing the mental health system and our best attempts at recovery. The co-opted and medicalised approach to Recovery is a meaningless construct these days and matters little to me in my day-to-day existence.

I request that my personal agency be respected. I know what helps and what does not, and I wish to maintain choice and control over my own life.

Overall, I am deeply worried that this Bill represents a shift away from the original vision of the NDIS - to give people with disability choice and control over the supports they need to live an ordinary life. It seems more focused on cutting costs than on improving outcomes for people with disability.

I strongly urge the Committee to recommend significant changes to this Bill. At a minimum, there must be thorough consultation with people with disability and our representative organisations to ensure any reforms genuinely meet the needs of the people the NDIS is intended to support.

Note that when I refer to representative organisations, in the case of people with psychosocial disability, I am referring to organisations made up of people with lived

experience of disability and not providers or the mental health industry lobby, whom have vested interests in regaining control over psychosocial participants and the

revenue streams that go along with us. I fully support and appreciate the amazing work done by organisations such as the Justice and Equity Centre and Villamanta, both of

whom have shown themselves to be wonderful allies to people with disability.

The NDIS is too important to get wrong. We must take the time to get this right, with

people with disability at the centre of the process.

If the Committee is not willing to listen to the legitimate concerns of People with Disability and our many Allies, then I think the Bill should not be passed.

Please do the right thing by People with Disability and respect our community’s concerns over this rushed Bill.

Regards,

Byron Stol.