The new lifeline fund, part of $1.8 million set aside in the most recent ACT budget to address problems with the NDIS, came amid harrowing stories of people forced into hospitals and children surrendered to the government by families in crisis.

Four years into the scheme, many of the 6409 Canberrans on NDIS support plans are thriving and the number of disability providers has shot up.

But dozens of organisations also report they have been left in financial trouble, struggling to keep essential services going after the new model saw states largely withdraw from disability funding.

While eleventh hour intevention from the ACT government saved a number from collapse in the past year, including SHOUT and Epilepsy Association ACT, peak body National Disability Services has called on the territory to do more in a recent budget submission.

ACT manager at NDS Rey Reodica said a Canberra provider had been forced to shut up shop just in the past few weeks.

"A couple have recently closed, many are relying on money from other areas to try to cross-subsidise and make it viable," he said.

Under the scheme, providers no longer receive block funding from governments. Instead, participants are awarded their own pool of money to buy services. It's designed to increase choice and control for people with disability, as well as boost market competition.

But on the ground services say funding is now limited to a set criteria of approved supports, excluding costs such as staff training or community programs.

Glenn Vermeulen, president of the ACT Deafness Resource Centre, said his organisation was one of the lucky few to secure an NDIS grant this financial year - and it was still running on the "smell of an oily rag".

"We get nothing from anywhere else, if we miss out on a grant next year, and that's likely, we'll be closed by Christmas, we've already had to cut down our hours and [services]," Mr Vermeulen said.

"Everyone's suddenly expected to become self-funding. We've been doing what we do for more than 30 years, we can't just ask people to pay."

Pegasus Riding for the Disabled also lost all its government funding in the change, turning to the Canberra community and philanthropic donors to stay afloat amid a $240,000 shortfall.

Executive manager Matthew Watson said that, while the therapy program wasn't in any danger of closing just yet, funding was not certain either.

"We managed to get an NDIS grant but that's for a new program, it won't help us keep the doors open," he said.

"The NDIS hurt us, but we want to figure out how to work with it too."

When the money at Epilepsy ACT ran out in February, ACT Health stepped in at the last minute with $100,000 to see the organisation through until July

"We don't know what happens after that," executive director Fiona Allardyce said. "We missed out on NDIS grants, but the demand isn't going away, it's increasing."

Ms Allardyce said a number of people with epilepsy struggled to secure NDIS support.

"We're seeing kids who have seizures every day, where it's affecting their schooling, their lives, knocked back."

This month, Office of Disability ACT director Ellen Dunne said there was a lot of work underway to assess and avoid a market failure in the sector.

A spokeswoman for the agency which runs the NDIS said the scheme was never intended to replace mainstream services such as health, education or housing, and the agency worked with state governments to assist people in crisis.

It plans to roll out a new pathway offering more specialised supports to people facing a range of challenges including homelessness, incarceration and mental health issues. Up to 15 per cent of NDIS participants are expected to require this level of support, the spokesman said.

"It's important to remember, the NDIS is not welfare – it is insurance," he said. "[It] takes a lifetime approach."

As people reached their goals and became more independent, they often no longer needed the same level of NDIS supports or support at all, he said.

In 2017, after The Canberra Times reported a number of families were considering relinquishing care of their children amid the closure of respite services, the agency responded by boosting its prices for providers.

Last financial year, the ACT Office of Disability spent more than $300,000 helping six people in crisis and advocated for 130 NDIS participants directly with the agency. Since July, the new fund has paid for things like emergency accommodation, respite and in-home support, a government spokeswoman said.

In its own budget submission, People with Disabilities ACT warned that only about 10 per cent of the 65,000 Canberrans with disability are supported by the NDIS, and the ACT government still had a "substantial role" to play in the sector.

An ACT assembly inquiry into the implementation of the NDIS will report its findings this month.