A Bendigo mother has slammed the NDIS and says the system to review plans is not allowing people living with a disability to have the continuity they need.
Disability support worker Jo Boyd spent almost a year fighting to increase her 19-year-old son's NDIS funding.
Lachlan Boyd, who has autism spectrum disorder and is non-verbal, graduated from Bendigo Special Developmental School last year.
Lachy is considered high needs and requires full-time care.
After flourishing in his final year of school, his mother said he would not leave his room and feared he was withdrawing.
"Without the funding in place we weren't able to even start investigating these things," Ms Boyd said.
"We weren't able to let him know what we might be doing [after graduation] because we didn't know if we could confirm that later on with funding."
The Bendigo mother of three started working with local area coordinators on Lachy's plan in February last year, nine months before leaving school, anticipating his care needs would increase after graduation.
Ms Boyd expected he would go from three hours of funded support a week to 30 or 40 hours a week.
"We were hoping we would be able to establish maybe four or five days a week, like a 9-3 [school day]."
A spokesperson for the NDIA says average payments per participant have increased by 10.8 per cent per year over the past three years, and the NDIA makes all planning decisions in accordance with the NDIS Act.
Participants 'massively disrupted'
Leah Taaffe is the chief executive of Community Living and Respite Services, an NDIS provider based in Echuca with 350 clients.
She said most of the provider's clients had had their funding reduced in the past 18 months.
"On average, that is a reduction of 11 per cent.
"That's quite significant when people need support 24 hours a day, seven days a week, and that's support for their daily living as well as their therapeutic support.
Ms Taaffe said her organisation could not deliver programs without funding as it was "unsustainable".
"If someone's been seeing someone once a month, that goes to once every two months because the therapist can't afford to be seeing people for free," she said.
NDIA declines all funding reviews, provider says
Melissa Zera, acting chief executive at Amicus Community Services in Bendigo, said her organisation was also seeing a lot of funding issues.
"There really appears to be some internal messaging or internal practices that are impacting on the planner's decision making, resulting in a reduction to plans," she said.
To challenge a decision made about NDIS funding when plans are reviewed, people can ask the agency to reconsider, referred to as a "review of a reviewable decision".
All of Amicus's participants who have submitted a review of a reviewable decision over the past 18 months have had their request declined by the NDIA.
Disability advocates and legal services say there has been a large spike in the number of NDIS participants who have taken their cases to the Administrative Appeals Tribunal (AAT) after having their funding cut.
"This is a very stressful and long process," Ms Zera said.
A spokesperson for the NDIA said the agency was continuing to work with participants, their families and carers on improving the scheme's experience.
"The NDIA understands the challenges associated with finding support providers in regional and remote areas, and urges participants and their support networks to contact their local area coordinator who may be able to help find services in their area, or work out other options for their situation," the spokesperson said.
They also said there was no directive to reduce funding to NDIS participant plans and planning decisions made by the NDIA continued to be made in accordance with the NDIS Act.
Delays with funding puts parent out of work
Missed meetings, delays, incorrect information and nonsensical assessments have frustrated Ms Boyd, who has worked as a disability support worker for years, while caring for her three kids.
She said advocating for her son's needs and finding him the right care had become a second part-time job.
"Every night I come home and I have a bunch of emails to go through," she said.
She is not alone, with hundreds of people with autism and intellectual disabilities losing funding, resulting in parents becoming full-time carers or having to sell their homes.
Ms Boyd said her mental health had suffered from the stress of organising Lachy's funding, carers and activities — something a local area coordinator or support coordinator is supposed to do.
"I'd get that legwork all done and I'd get things in by the end of the week," she said.
"And then it'd be a month later before you get a call back from someone, and it's in that month Lachy has regressed to the point where he doesn't want to get out of bed."
No cuts to the NDIS, government says
An NDIA spokesperson said the agency respected a participant's right to request a review of any decisions made.
They also said the average payment per plan had increased.
"There was no reduction in the average plan budgets of participants who were in the scheme at March 31, 2021 and at March 31, 2022," the spokesperson said.
"In the Loddon region, average payments per plan have increased from $40,700 to $41,800 in the last six months."
The NDIA had implemented a range of activities and was trialling a range of approaches to help participants access the supports they needed, the spokesperson said.
"This includes higher price limits for support in remote and very remote areas."
Minister for the NDIS Linda Reynolds said there had been no cuts to the scheme.
Ms Reynolds said that $157 billon was $41 billion more than what was forecast in last year's budget, and more than $5 billion in operational funding for the NDIA.
She also said in the latest NDIA quarterly report that 39 per cent of plans increased at review by more than 5 per cent, and 16 per cent of plans decreased by more than 5 per cent.
"We also know that the majority of NDIS participants are satisfied with the planning process with an 86 per cent satisfaction rate in the March quarterly report, rising from 83 per cent in December," Ms Reynolds said.
