Kathy and Daniel Dwyer fear they will no longer be able to get the critical services they need for their two daughters, both on the autism spectrum, as support coordinators abandon the industry amid an ongoing pricing freeze.
Living in Murwillumbah on the north coast of NSW, the family's access to services for sisters, Jade and Brooke, is limited.
"Until we got a good support coordinator, we had so much trouble getting the support we needed," Mr Dwyer said.
"We were pulling our hair out, almost in tears trying to find help."
The Dwyer family is among tens of thousands of National Disability Insurance Scheme (NDIS) participants affected by a price freeze on support coordinators and plan management services, which has been confirmed for the third year in a row.
If included in an NDIS plan, support coordinators can help participants understand their plan, communicate with the NDIS, and connect participants with appropriate services.
The Dwyers say, without a support coordinator to assist with the complex needs of their two daughters, sleepless nights and constant worry will be the norm.
"When you get off a phone call with the NDIS, you're emotional, to say the least. It's almost like they're accusing you of being an inadequate parent," Mr Dwyer said.
"We're not educated in the NDIS system and how it works. Support coordinators get us the support we need," he said.
"Kathy and I are time poor as small business owners. We do a lot of work to keep a roof over our children's heads and put food on the table."
Following the pricing decision, the Dwyer family's provider, Your Plan Manager in Tweed Heads, has cut services in half and is considering closing the doors on its support coordination services.
Director Tanya Walford said the pricing freeze did not add up, given many other services in the disability sector had seen price increases, with the relevant award raised 4.6 per cent this year.
"When we haven't had a funding increase in three years, we can't pay staff, and small, quality providers like us can't compete with the big end of town," Ms Walford said.
With the region hit by floods earlier in the year, Ms Walford said her already traumatised clients were going to become even more vulnerable.
"People need more support, but the agency didn't increase people's funding," she said.
"We had participants who were flooded, whose special beds or wheelchairs were destroyed."
A survey by the peak body, Disability Intermediaries Australia (DIA), revealed more than 250 providers said they have decided to close or indicated a likely exit within the next year.
"Participants are supposed to have choice and control. That's the spirit of the NDIS," Ms Walford said.
"Instead, it's diluting the market, so you're left with one provider in the town or the whole region."
The NDIS justifies the decision to freeze prices again this year with a DIA survey that found 41 per cent of support coordination providers reported a profit in 2020–21 and 39 per cent broke even.
Quality concerns
DIA director Jess Harper recognised there was a quality control issue in the sector.
"This year's freeze will 100 per cent have an impact on quality within the market," Mr Harper said.
"So far we are seeing good and high-quality providers exit."
An NDIS Quality and Safeguards Commission spokesperson said the agency "monitors the quality and safety of NDIS services by regulating all registered and unregistered NDIS providers and their workers".
According to an NDIS spokesperson, 320 new providers have registered as support coordinators in the first half of the financial year.
"Not all but in the main, we are seeing these new entrants operating at lower and unsustainable levels of quality in order to be viable," Mr Harper said.
"Despite the NDIA's repeated reviews into support coordination and claims that they 'monitor the market', the NDIA has not developed a cost model for support coordination … and we have seen little evidence of such monitoring given the current quality variability and market condition."
While the sector is hopeful the NDIS will increase the price for support coordinators, the Dwyer family are concerned they may become "lost in the system again".
"It scares me what's going to happen and how we're going to survive," Mr Dwyer said.
"This is going to have a lasting and major impact on good, hardworking families that want nothing but the best for their kids, for them to grow into adults and have these supports to become independent."
An NDIS spokesperson said the agency "continues to manage and support participants to find alternative providers" and that "feedback from the sector will be taken into account for any future reviews of the NDIS".
NDIS Minister Bill Shorten said in a statement he had spoken to support coordinators who have "expressed their concerns about the latest NDIS Price Review".
Mr Shorten said he had "brought forward the 2023 NDIS Review … to bring known issues within the NDIS under a microscope".
