A Ballarat woman who had $29,000 worth of support payments from the National Disability Insurance Scheme (NDIS) cancelled has criticised the organisation's handling of her case.

Tracey Roberts, who suffers from mast cell disease and Postural orthostatic tachycardia syndrome, was granted $29,000 from the National Disability Insurance Agency (NDIA) in July after having her initial application declined.

She requested an appeal to seek additional funds for a new wheelchair, but was informed in November the decision to provide her with $29,000 in support payments had been reviewed and cancelled.

"I got a phone call saying I no longer met eligibility for NDIS and everything in my plan stopped," Ms Roberts said.

"I've lost quite literally all my supports. Just simple things, going to grocery shop, that sort of thing. I'm heavily reliant on my family now."

No clear path forward

Ms Roberts said her condition has been classified as a health issue, not a disability.

"I can basically stand for about 10 to 15 minutes before my blood pressure will drop dangerously low and my heart rate will go really high," she said.

Tracey Roberts wants greater clarity around why her NDIS funding was cancelled. ( ABC Ballarat: Dominic Cansdale )

"I'm basically allergic to many, many things and my triggers change every day.

"I have my major triggers like perfume, cigarette smoke and a lot foods, but also I can eat something today and then eat the same thing tomorrow and go into life threatening anaphylaxis."

While she still receives a disability support pension, Ms Roberts has lost access to the Victorian Government's Home and Community Care (HACC) program because she was once eligible for the NDIS.

"I'm desperate at the moment. I don't know where to go," she said.

"I've had to ask for so much more help off my family, which I'm very lucky to have their support, but it's very difficult for me to do so because I'm not someone that asks for help easily."

The Victorian Government began rolling back the HACC program in January.

It funds local councils to help people under the age of 65 find at-home support services such as cleaning, cooking and shopping.

Report recommends more clarity and transparency

People dissatisfied with an NDIA decision or plan can have it reviewed, but the NDIS Act requires it be conducted "as soon as reasonably practicable", and does not outline any specific timeframe for a decision to be made.

A Productivity Commission report handed down in October recommended the NDIA "publicly report on the number of unscheduled plan reviews of decisions, review timeframes, outcomes of reviews and stakeholder satisfaction with the review process".

In its submission to the report, Down Syndrome Australia stated "the agency (NDIA) rarely provides a contact name for appeals or provides a process by which participants can escalate their concerns … This is not customer friendly nor does it encourage participants to best advocate for their rights".

Brain Injury SA said, "The information provided to participants about review is unclear and inadequate.

"There is minimal information about the process and no information about where participants can get help with a review."

The NDIA agreed it could improve its reporting in this area, and said work was being done on improving participant and provider pathways.

But Ms Roberts said her interactions with the NDIA had left her feeling invisible.

"The people that answer on the 1800 line are wonderful and I don't believe that it's their fault," she said.

"But when they say 'We've escalated this situation, someone will give you a call in a couple of days', I've been told that since February this year and I have not had a phone call from a planner."

A spokesperson for the NDIA was unavailable to comment.