WARNING: This article contains references to mental health and suicide.
Some days, Kristin Gillespie's disability is so debilitating she can't make a meal, leave the house or rememberhow to use her phone.
On those days, life feels like "swimming laps in an Olympic-sized swimming pool full of mud".
"I have terrible brain fog. I have a lot of trouble thinking clearly and I feel completely overwhelmed," she said.
Ms Gillespie, 60, lives with psychosocial disability and has a string of mental health diagnoses, including complex post-traumatic stress disorder, bipolar disorder and major depressive disorder.
She was diagnosed with depression at 16 years of age — a time that also contained her first "acutely suicidal episode" — and has been seeing mental health specialists on and off ever since.
Ms Gillespie always wanted to work and "give back to her community", having been employed in retail and administration roles. She also started several of her own businesses selling clothing and books.
But as time went on, the mum-of-three came to the "devastating" realisation she may never be able to hold down a job again.
"I do really well for a little bit, then I would crash into a really severe depression ... and eventually I realised that this was a pattern," she said.
Ms Gillespie feels lucky to be a participant of the National Disability Insurance Scheme (NDIS) and receives funding for several supports, including art therapy, transport and assistance with household tasks like cooking, cleaning, and shopping.
But not everyone with a psychosocial disability has the support they need to thrive.
Advocates say psychosocial disability is also shrouded in stigma, and with the community set to be majorly impacted by planned changes to the NDIS, there's concern many could be without critical supports.
What is psychosocial disability and how does it differ to a mental health condition?
Psychosocial disability is an umbrella term for disability that arises from a mental health issue.
It's not just about having a diagnosis of a mental health condition, but how that condition interacts with someone's social environment and impacts their ability to function.
"We call it a disability because it's a disabling, often long-term experience of mental health challenges ... impacting a person's life," said Jordan Frith of the National Mental Health Consumer Carer Forum, a lived experience advocacy body.
Ms Frith, who lives with psychosocial disability, said that can include things like reduced participation in the community and economy, or ability to keep up with day-to-day needs.
Psychosocial disabilities can fluctuate and affect people differently, and not everyone who has a mental health condition will also have a psychosocial disability.
Because of its nuances and invisibility, advocates describe psychosocial disability as one of the most misunderstood areas of disability.
"It's a very difficult to describe in normal medical language ... and it's often associated with really stigmatised experiences, like substance use and experiences of suicide," Ms Frith said.
"So you kind of get the double whammy effect: stigma of having a disability as well as the stigma of experiencing a mental health condition."
Left 'in the lurch'
Finding effective support for psychosocial disability is a challenge, with many people finding themselves caught between the NDIS and the mental health system.
Ms Frith said many services that used to be run through the states and territories were defunded when the NDIS was introduced, which now left many people with psychosocial disability "in the lurch".
While 63,508 NDIS participants have psychosocial disability listed as a primary diagnosis— making them the fourth biggest cohort on the scheme — it's well below the 1.1 million people estimated to be living with one.
NDIS participants with psychosocial disability are employed at half the rate (11 per cent) of everyone else on the scheme aged 15 - 64 (23 per cent). They also experience lower social and community engagement.
Ms Frith said that's because the NDIS workforce didn't understand psychosocial disability well enough and supports had not been tailored.
Occupational therapist Muriel Cummins, who is part of an alliance of advocates that made submissions on psychosocial disability to the recent NDIS review, said Australia now had an opportunity to build a better support ecosystem.
"People with complex psychosocial disability absolutely need the NDIS," she said.
"Hopefully in future there will be fewer gaps, but it's going to take a lot of work and engagement [to get there]."
NDIS fears
People with psychosocial disability stand to be greatly affected by the recommendations from last year's NDIS review and many worry reforms will affect the support they receive.
Those recommendations include a "a new approach to NDIS supports for psychosocial disability, focused on personal recovery", a new early intervention pathway, and granting access to the scheme based on functional need rather than diagnosis.
"People with psychosocial disability need to know what's ahead," Ms Cummins said.
"There's a lot of talk of change ... There's a lot of fear they might be removed from the NDIS."
Ms Frith said many also felt like they hadn't been adequately consulted.
She said lack of clarity around the focus on recovery— given NDIS participants currently need to demonstrate the permanency of their disability to access the scheme— was particularly concerning, as were the new early intervention pathways.
"You can have some great years and you can have some bad years— at what point do we delineate and say, 'you qualify for the full support' and 'no, you qualify for the early intervention support'?"
Ms Frith said it was crucial people with psychosocial disability were "invited to the decision-making tables" and the next iteration of the NDIS didn't simply "duplicate what we already have".
In a statement, NDIS Minister Bill Shorten said psychosocial disability "will remain in the scheme" and he expected the size of the cohort to "increase, not decrease".
"I want to reassure Australians that the NDIS is here to support people with permanent significant, psychosocial disability," he said.
"The independent NDIS review told us that the NDIS needed to change and improve when it came to psychosocial disability. We want to make sure there is a new dedicated approach to psychosocial disability that better meets people's episodic needs and focuses on recovery."
Mr Shorten said changes "putting people back at the centre of the NDIS" would take "significant time" and needed to get underway.
"There are opportunities for deep engagement and I encourage people with disability to get involved," he said.
Ms Gillespie said the help she's received through the NDIS have been life-changing and that everyone with psychosocial disability deserves the same level of support.
"Our disability is real," she said.
"It has huge impacts and we should have equal rights with other disabled people."
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