Families shut out of respite care in Canberra have been granted a last-minute reprieve after a deal was struck between Marymead and the National Disability Insurance Agency over the weekend.
But the ACT government and advocates have warned the solution is only temporary, described by families as a "bandaid" fix, and further work is needed to address national funding shortfalls in overnight care for young people with disabilities.
Last month, The Canberra Times reported that clients with high needs would be shut out of Marymead's respite service from October 26, as the provider announced it could no longer afford to run the service under NDIS funding.
Respite at Marymead was to be radically reduced from seven nights a week to four and about 70 per cent of the 120 families using the service locked out.
Several families who spoke to The Canberra Times said they were seriously considering giving up their children as a result, unable to continue caring without the regular break of overnight care.
On Tuesday, Marymead chief executive Camilla Rowland announced a solution had at last been reached between Marymead and the agency, with the support of the ACT Office of Disability, that would allow young people with high needs to continue using the service.
The individual support plans of those affected by the changes will be topped up by the agency with extra dollars for respite (also known as short-term accommodation), allowing Marymead to charge a higher rate for the service.
It is understood affected clients should be put on new temporary plans from next week, though these plans are only expected to last for the next six months as the agency awaits the outcome of an independent review of its pricing.
Karna O'Dea at home with her son Malcolm, who has complex needs and uses Marymead's respite service every second weekend. Photo: Jamila Toderas
Last month, Marymead said it had been "running at loss" for some time under the agency's current funding rate of $501 a night, and had long been advocating for a price that better reflected clients who required more care, as well as penalty rates for staff working weekends.
Advocacy groups, along with the ACT government, expressed similar concerns about the low rate, warning of a "looming crisis" in respite care that could extend beyond the territory as the NDIS was rolled out around Australia.
On Wednesday, ACT Minister for Disability Rachel Stephen-Smith said she was very pleased a solution had been found for affected families, but said "the ACT government will continue to advocate for a sustainable pricing model for short-term accommodation".
Fiona May, chief executive of the ACT Disability, Aged and Carer Advocacy Service, also welcomed the short term fix. Having been flooded with calls from distressed carers since Marymead's service changes were revealed in September, she called on the agency to now recognise the importance of respite care within the national scheme.
"The uncertainty for families, the fear and concerns they were all experiencing was surely unnecessary," she said.
"Now we need to look to the long-term, and that's not going to be sorted just in the ACT."
Ms May was hopeful the pricing review, due to report its findings at the end of the year, would deliver a higher price for respite care to ensure the service was sustainable.
Lucy McCarthy said her family had been left "at breaking point" under the shadow of the Marymead respite reduction.
She described the solution as a "band-aid" but welcomed the extra support, which would mean her 16-year-old son Logan could continue using the service for one week a month.
Canberra parent Nick, who did not want his last name published, had also been unable to find an alternative provider for his teenage son, who has complex autism.
He said he chased the agency for an answer last week, before being told of the new plan, which he said brought a lot of relief.
"But what I fear is, if there's not an acceptable outcome from the pricing review, we'll be back in this position again in a few months," he said.
"Unfortunately, it doesn't look like we're going to get a long-term solution any time soon."
Karna O'Dea, whose son Malcolm uses Marymead's respite service every second weekend, said she was angry that the situation had come to this but glad to hear something had been done.
"But I am worried that not all the families locked out will be looked after, just those of us who said we couldn't keep caring."
Last month, the ACT's only other provider of respite for young people, the Disability Trust, said it was also considering reductions to its service in light of NDIS funding shortfalls. It is unclear whether it will be reach a similar agreement with the agency.
Ms May said the Marymead solution could set a precedent for the agency when dealing with respite funding problems across Australia ahead of the pricing review's outcome.
A spokeswoman for the agency said the NDIA was committed to supporting people with disability, along with their families, carers and providers.
"[We aim to] identify and resolve issues as we implement the NDIS which is a major and complex reform," she said.
The Office of Disability said it was pleased that an interim solution had been reached in the ACT, having "worked diligently" to support families affected by respite funding shortfalls.
'We continue to work with the NDIA for a long term solution," a spokesman said.