Life changed significantly for Penny Lalor after she had a stroke in 2020.

The former disability worker, who lives in Sydney’s south, now requires full-time care, with a lot of support coming from her family, including daughter Bethany.

After her stroke, Penny, who now finds it difficult to speak, joined the National Disability Insurance Scheme (NDIS).

“We’re very thankful for the NDIS because that allowed us to bring her home when we were being told to put her in a nursing home,” Bethany said.

“It’s been fantastic up until the most recent plan."

Penny’s package has now been reduced to include five hours a week care through the NDIS — a fraction of the 36 hours she got in her first package — with no explanation for the reduction.

Penny’s family and health practitioners say she needs 24-hour care, and have challenged the package reduction in the hope they can have more hours added.

“If we don’t get what we need in the review, most of her care will be provided by family — which is going to cause a lot of issues, because we all have to work as well,” Bethany said.

While an estimated 4.4 million Australians live with disability, just over 500,000 are on the NDIS.

Plenty more are trying to access support, without success.

Appeals against NDIS decisions have spiked in recent months, with complaints at the Administrative Appeals Tribunal surging by 400 per cent between July 2021 and January 2022.

Labor pledges review if elected

In a major policy announcement regarding the multi-billion-dollar NDIS, Labor on Tuesday vowed to review and "restore trust" in the scheme if it wins the May 21 election.

It comes amid warnings about the long-term sustainability of the NDIS, and as advocacy groups say some on the scheme, such as Penny, have been facing significant cuts to their plans in recent months.

It also follows a bitter fallout from the government's hugely contentious and now-scrapped independent assessment reforms, which some disability advocates said damaged the disability community's trust in government.

Labor unveiled six key measures it said would "return the scheme to its original vision", aimed at fixing "wastage" on the administrative side of operations and putting people with disability "back at the top" of the NDIS.

They include:

• an expert review that will "guarantee plans will not be arbitrarily cut"
• lifting staffing levels at the National Disability Insurance Agency (NDIA), which runs the NDIS
• reviewing the use of external lawyers and consultancy contracts, as well as cracking down on "cowboys out there taking advantage of the NDIS money"
• streamlining the planning and appeals process to make NDIS decision-making "more efficient, fair and investment-focused" 
• and appointing a senior officer within the NDIA to boost service delivery in regional areas 

"What we'll do is stop the expensive carpet-bagging consultants and the top end of town lawyers growing rich on taxpayer money to stop people getting their wheelchairs or home shower modifications," Labor's NDIS spokesman Bill Shorten said.

Labor says it will also increase funding for advocacy by $10 million, pause changes to supported independent living and investigate ways to cut red tape for people with a disability seeking appropriate housing, establish an employment "centre for excellence" and develop a national autism strategy.

"Sometimes disability doesn't always get the attention I think it deserves, but it's an iceberg issue," Mr Shorten said.

There have been multiple reviews of, and parliamentary inquiries into, the NDIS in recent years, the most significant of which was undertaken in 2019 by former public servant David Tune.

The review found areas of the NDIS Act were rigid, participants were experiencing lengthy waits to find out if they would receive support, and decision-making was inconsistent. 

The government then announced it would introduce independent assessments, before being met with enormous backlash from the disability community and outcry from Labor and the Greens.

What does the Coalition say?

The Coalition has in the last few years warned the NDIS — which is funded by both the federal government and the states and territories — faced sustainability issues and was growing faster than expected.

It said last year spending was on track to pass that of Medicare.

Announcing in his budget speech last month that spending on the scheme would rise to $157.8 billion over four years, Treasurer Josh Frydenberg said the NDIS would "always be fully funded" under the Coalition.

The latest NDIS quarterly report shows the average plan budget fell by 4 per cent in 2021 to about $68,000.

In a statement, NDIS Minister Linda Reynolds said the Morrison government was providing record funding for the growing scheme, which is "only possible because we have a strong economy".

She said the "economic insecurity" offered by Labor was a risk to that record funding.

"Labor's introduction of an additional layer of bureaucracy with 'expert reviews' will slow down decisions for participants," she said.

Senator Reynolds said Labor's promise to remove the NDIA staffing cap and add extras needed to be "properly accounted for" in policy costings.

'This election is a critical moment'

NDIS campaigner group Every Australian Counts welcomed Labor's announcement but said it was looking forward to seeing more detail about it.

It also called on the Coalition to further outline its plans for the future of the scheme.

"People with disability, families and our supporters see this election as a critical moment. We are asking our elected representatives to stop, listen and get the NDIS back on track. People with disability deserve no less," campaign manager Jean Cotchin said.

"People with disability are being forced to jump through impossible hoops to access the essential supports and services they need, while the NDIA spends millions on intimidating private lawyers who are hired to take on the very people the NDIS is intended to support."

Children and Young People with Disability Australia also welcomed Labor's proposals and said it was calling on all parties to increase equity for children and young people with disability.

"The majority of NDIS participants are aged under 25 years, and we hope all parties make similar commitments and continue to invest in improving the NDIS," CEO Mary Sawyer said.

"The NDIS is currently extremely difficult to navigate for children and young people with disability and their families, with many struggling to access and juggle the complexity of the scheme. These announcements to streamline the NDIS, based on co-design, are welcome."