Opinion | 1 February 2024

Too Much About Us Without Us: Psychosocial Disability and the NDIS Review

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Muriel Cummins and Neil Turton-Lane

Written by Muriel Cummins and Neil Turton-Lane, in collaboration with six NDIS participants who are members of the Australian Psychosocial Disability Collective.

We understand that some of the changes suggested in the NDIS Review report may be distressing to read. Seek out a safe person if you need to. Also, we’ve included some support contacts below. We wrote this blog in tune with the UNCRPD ruling that all people have a right to know and understand changes that might happen in their lives.
The Review says that a new ‘pathway’ for psychosocial disability is required
The Report calls for new ‘foundational’ supports in the community, for people with psychosocial disability, who are not in the NDIS. The Report recommends these foundational supports be co-designed with people living with disability, their families, and the disability sector. The foundational supports could assist with things like housework, peer support, and some capacity building. The Report says that no NDIS changes should happen, until these new foundational supports are firmly established.
The Report also recommends a new pathway for new NDIS participants with psychosocial disability, called the ‘early intervention’ pathway [NDIS Review Support Analysis, Chapter 2, Section 6, p.516-521]. So what does ‘early intervention’ mean for people who have lived long-term with severe and enduring mental health conditions, who have proven permanent disability, who have already experienced years or even decades of mental health treatment, and are, on average, aged 35 or older?.
What exactly ‘early intervention’ could involve, is a little unclear from the Review report. What the Report does tell us, is most people with psychosocial disability who come into the NDIS, will have early intervention, for up to three years. They will have assessments frequently. They will have less choice in providers and services available to them compared to current NDIS participants. It is unclear if this pathway will include access to all current NDIS supports, such as NDIS home and living solutions. After three years, the Report predicts some people will no longer need the NDIS, with some people going on to ‘permanent’ NDIS. The Minister promised that the current 63,000 participants with psychosocial will not be removed from the NDIS
The Report seems to say that personal recovery (recovery of hope, and sense of self) is the same as overcoming disability. The assumption that many people with substantial psychosocial disability can recover function within three years, to the point that they no longer need the NDIS, is not supported by evidence. Mental illness, and psychosocial disability, are not the same.
Participants told us that they think the early intervention pathway would need a lot more development, if it is to become part of the NDIS. Participants told us they think people who clearly need the ‘permanent’ NDIS should not have to go through the early intervention pathway. Participants also told us about their concerns that they will have reduced choice and control under the new pathway – and they are worried the pathway might separate or even segregate psychosocial disability from the broader group of NDIS participants, through policy.

“We want a social model of disability where our human rights are respected, just like all other people with disability…not a return to a medicalised model of recovery”
NDIS participant with psychosocial disability

Does ‘Nothing About Us, Without Us’ apply to psychosocial disability in the Review report?
There were no NDIS participants with psychosocial disability or psychosocial lived experience representatives on the NDIS Review panel. Lived experience groups have described some of the Review recommendations as ‘backwards’ policy, particularly where participant choice and control may be reduced.
“They believe they know what is best for us, undermining our agency. We fear being chained to large providers not of our choosing. Why are they recreating the systems we fought to get away from?”
NDIS participant with psychosocial disability
A group of participants have formed the Australian Psychosocial Disability Collective, and have started a petition to Minister Shorten, calling for fairness in the NDIS for psychosocial disability. View the petition here.

On Trust and Trauma
The NDIS Review report does have some positive ideas and recommendations. For example, it calls for an end to restrictive practice, such as seclusion and restraint. It recognises that more services for people outside the NDIS are needed. The Report also says that some NDIS services should be ‘trauma-informed’, meaning not causing people distress and trauma.
A trauma-informed NDIS is a good idea, but should not be limited to some parts of the ecosystem, nor can it wait for five years while big changes are made. It has to start NOW. Changes to disability assessment need to be carefully co-designed, as research shows that disability insurance reassessment can cause harm to mental health . Add to this, complex system changes and a lot of negative media reports calling disability supports “cost-blow-outs”, and the need for trauma-informed approaches becomes very apparent.
The need to rebuild trust in the NDIS is well recognised. Rebuilding trust means genuinely including people with disability in planning disability supports and services, including the early intervention pathway. People with psychosocial disability and their allies told us that it is important not to rush changes, and to take the time to genuinely co-design foundational support and NDIS pathways to build an effective and trustworthy Scheme for the future.

Some readers may find these numbers helpful:
Lifeline 13 11 14
Suicide Callback Service 1300 659 467
Blue Knot Foundation (02) 8920 3611

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