Thousands of families relying on the National Disability Insurance Scheme (NDIS) across the country are living in fear their funding will be slashed, as the number of appeals balloon.

Data shows the Administrative Appeals Tribunal is congested with cases of people trying to have their cuts reinstated, with appeals against NDIS decisions skyrocketing 270% in the last 12 months alone.

Sydney mum, Kaija Ross, whose six-year-old daughter Jemima has cerebral palsy, says the situation causes immense stress on her family.

“Approval took a long time and every year we have to reapply for funding. This involves assessments and reports by all of her allied health team (speech pathology, physio, OT and a social worker),” Mrs Ross says.

Her daughter has been under Early Intervention with the NDIS since she was three years old, but the family still spends the bulk of funding on reports to reapply for that same level of care.

“It takes a couple of months to coordinate and is very costly - a large portion of her funding goes to this.”

Mrs Ross says the funding has allowed them to buy Jemima’s equipment, including her wheelchair and new orthotics every six months - but the family face uncertainty not knowing if their level of funding will be matched.

Founder of Disability Support service Kynd.com.au Michael Metcalfe, says the system is complex and clunky, with an overhaul of the system needed to better support the 500,000 NDIS participants.

"People living with a disability, their families and the Support Worker ecosystem are fundamentally reliant on reasonable, consistent and certain funding for NDIS Participants. Whole system changes are needed,” he says.

"Why not give Participants a three-year plan for funding certainty, but to ensure sustainable support, release funds on a monthly basis, with rollovers of unused funds.”

"That will help to avoid emergency NDIS plan reviews, which put participants needing complex and critical support at risk, while negatively impacting workforce supply.”

"We urge the next government to direct the NDIA to make the scheme simple and sustainable for both participants and providers”.

Mrs Ross says the initial approval to get on the NDIS took months.

“It was hard to get answers as to where we were in the approval process and what the delays were. Many phone calls later, we found out that one of her reports had not been uploaded correctly - a five-minute fix that took months of calls for someone to finally look into and tell us what the delay was,” she says.

Mr Metcalfe has identified four key areas he believes are in desperate need of change:

* Funding certainty (including a Medicare style funding levy)

* Rolling Releases (Give a 3 year-plan)

* Provider Viability (Adopt a virtual NDIS payment card)

* Smart Technology (address the hidden cost of poor technology)