Nicci Carlson sits in her Canberra apartment working on some needlepoint craft.
Since her husband passed away a few months ago, she's found that art therapy helps with her grief and keeps her mind occupied.
Ms Carlson has multiple autoimmune conditions, including psoriatic arthritis.
She is constantly in pain and is concerned she will soon lose her eyesight.
"I have pain every day,"
she said.
"All day, every day."
Nicci has found needlepoint to be a good outlet. (ABC News: Georgia Roberts)
Ms Carlson lives with these worries every day, but the burden of the proposed cuts to the NDIS — and potentially her own care — has instilled fear in her and the wider disabled community.
NDIS support is something she has had to fight for, advocating for herself time and time again.
"Fight, fight, fight for everything, it's never been easy," Ms Carlson said.
Nicci's friends all gave her a word to describe her that she could work into a painting as part of her art therapy. (ABC News: Georgia Roberts)
She has been present at rallies against the proposed cuts in the ACT, which she lists as another burden people living with a disability have to face daily: advocating for themselves.
She's exhausted, but she knows this is something she will have to keep fighting for.
"I keep seeing people lately who are angry and saying half the people on the NDIS are fakers," Ms Carlson said.
"Please point them out to me, because how did they get on if they're faking? Because it is incredibly hard to get on the NDIS. Well, it was for me; that's been my experience.
"Everything to do with them has been hard; it's never been easy."
The proposed overhaul
Under the proposed NDIS changes announced in April, recipients would be kicked off or prevented from accessing the now-$50 billion scheme, with many moved on to yet-to-be-built state-run supports.
According to government modelling, more than 240,000 people would exit the NDIS over four years, and an estimated additional 110,000 people who are not yet participants would be diverted from accessing the scheme by 2031.
The changes would save more than $30 billion over the next four years, and address concerns that the NDIS has been growing faster than Medicare, and that it has been exploited by rorters.
Nicci Carlson is worried the NDIS cuts will affect her. (ABC News: Georgia Roberts)
"I had people say to me, 'Well, it won't be you', 'It won't be people like you', — and I thought well, I've heard far too many stories already about people who have had various things removed that you wouldn't think would be removed," Ms Carlson said.
"If they can take a blind person's guide dog away, they can take anything from anybody, any time.
"And if they change the legislation the way they want to, they literally can."
Social and community participation cut
Ms Carlson is concerned that the proposed legislation grants the NDIS minister sweeping new powers to control funding, restrict participant eligibility, and set pricing.
"I'm worried they are giving way too much power to one person," she said.
Those concerns are shared by Greens Senator Jordan Steele-John, who lives with a disability himself.
Greens Senator Jordan Steele-John (ABC News: David Sciasci)
The senator has been a staunch advocate for the disabled community during the fallout from the proposed cuts, and led the charge on the deal brokered with the federal Labor government to allow a longer inquiry period into the changes.
"This really knocked a number of people to the ground when people were just starting to get up," he said of the proposal.
The cuts to social and community participation alone are expected to account for about a third of the over $30 billionin projected savings over the next four years.
Ms Carlson and Senator Steele-John are worried this will strip NDIS recipients of support workers who assist with everyday tasks like shopping, appointments, and exercise.
"People think that it's [cutting things] like fun, going into the community... and yes it is that too, but it is also [assistance to] go to hydrotherapy, go to a doctor appointment, go to the hospital," Ms Carlson said.
Senator Steele-John fears it will limit choice and autonomy.
"People won't be able to go outside if they need support to do that," he said.
Kelly Brown, chair of the Disability Advisory Council in the ACT. (ABC News: Simon Beardsell)
Council 'concerned' by lack of federal consultation
The ACT government's Disability Advisory Council (DAC), which gives advice to the disability minister of the day, also warned the cuts could bring on unintended consequences.
"We think reform is a good thing; we are just concerned we have had a lack of consultation," the DAC chair, Kelly Brown, said.
Ms Brown welcomed the federal government's decision to extend its inquiry into the cuts.
However, she said further extending the period of consultation would allow the government to work through more of the concerns of the disabled community.
In a statement, ACT Disability Minister Suzanne Orr said she understood the concerns raised by the disability community both in Canberra and across the country about the need for more consultation, planning and safeguards.
"Keeping people with disability at the centre of any reform is critical," Ms Orr said.
"Our priority is that people receive the right supports, and it is important that services outside the NDIS are appropriately funded to meet demand."
A final report from the federal government's extended inquiry into the cuts is set to be handed down on August 14.
