Having to grapple with the NDIS is no blessing – it’s a matter of government policy

When Catherine, the mother of four-year-old Ethan, asked Scott Morrison about the Coalition’s plans for the national disability insurance scheme, the prime minister had an unfortunate response.

Ethan is autistic and Morrison told Wednesday night’s debate he and Jenny were “blessed” to have “two children that don’t – that haven’t had to go through that”.

Morrison initially blamed Labor for politicising his comments, though the reaction from an offended disability community suggests words matter. He later apologised.

Another part of the exchange, which garnered significantly less attention, was more important to Catherine.

When host Kieran Gilbert asked if she was satisfied with the PM’s answer – he noted the Coalition was “fully funding” the NDIS – Catherine revealed her son’s NDIS funding had been cut by 30%.

Morrison showed concern and promised he and his staff would look into her case, a common and fair enough response from politicians in such a situation.

Viewers might have thought Catherine’s funding situation was the sort of one-off bound to happen in a $30bn scheme now supporting 500,000 people.

But the truth is, it’s not.

We don’t know exactly how exactly many people have had their plans cut recently but the rising dissatisfaction is neatly captured by a 400% rise in legal appeals against NDIS decisions post-July 2021. Such an increase is shocking and cannot be dismissed.

There has also been an avalanche of NDIS participants dumbfounded by cuts to their funding packages who have spoken to the media.

In the Guardian, examples include Ian, who has motor neurone disease and who had his 24-hour nursing support cut, and Sarah, who said she may have to quit her job because her 11-year-old autistic son’s package was cut by 70%. One mother, Michelle, who won a landmark NDIS funding case in the federal court, had her son Liam’s funding cut again late last year.

These cases are not just in national media like the Guardian and the ABC’s PM program, but are also being covered by local papers and TV stations. Talkback hosts say when they mention the NDIS, they are flooded with callers complaining about cuts.

The stories follow a similar pattern: a person with disability has been getting a previously funded support (like support workers, or transport funding, or therapies) but when their plan expires and is reviewed, the support – that is, the funding – is reduced or cut entirely.

Advocates are certain something has changed in the NDIS, likely the internal advice given to NDIS planners making these decisions, but the government has insisted things are as normal.

Yes, there are plenty of other cases where plans are still being increased, meaning the individual cuts are not captured by the overall national data, which shows only a 4% fall in average plan sizes in 2021.

But disability advocacy organisations, who assist people with disability to challenge cuts to their plans, insist they’ve been flooded with an unprecedented number of requests for help. They are increasingly seeing plans reduced by 30%, 40% or 50% or more.

And when they examine the letters that stressed and confused NDIS participants receive, they note an increase in the use of phrases such as that particular funding was not “value for money” or was a “parental responsibility”.

Quick Guide How to get the latest news from Guardian Australia Show

Thank you for your feedback.

The government counters that overall NDIS funding in the budget continues to increase, which it does, and significantly so. Critics say this can be explained by the increased – and admittedly unforeseen – number of participants joining the scheme, also an issue worthy of policy attention.

It should be noted, too, that the NDIS leadership last year established a secret Sustainability Action Taskforce, intended to “slow growth in spend per participant”. It has refused to exactly say what this secretive unit did, refusing FOI requests and stonewalling questions in parliament.

Labor says that, like Catherine’s son, Ethan, many of the cuts are to the funding packages of autistic children. Advocates believe the NDIS leadership is concerned there are too many autistic children getting on the scheme, and too few moving off it despite “early intervention” support.

In Catherine’s case, she noted the cuts to her son’s package after a first NDIS review “with no reason why” means she can’t “access intensive therapy” for Ethan.

Labor outlined a plan to “fix” the scheme this week. Some pledges, such as a crackdown on rorting, need more detail, but the idea of a better planning and review process is a necessary acknowledgment that people with disability should not be forced to essentially take legal action – in some cases being pitted against lawyers from private firms hired by the NDIA – to get what they are entitled to.

Many say dealing with these cuts – that is, gathering the evidence and information needed to challenge a decision – is like a full-time job. This is contrary to the very purpose of the NDIS.

And indeed, this goes to one of the defences put forward by Morrison’s colleagues to defend his “blessed” comments – that meant he had been blessed not to have to deal with the NDIS.

Morrison spoke glowingly about the NDIS, but he noted it “still has faults” and could be a “very difficult system” to navigate.

If having to deal with the NDIS is not a “blessing”, that’s not a matter of bad luck. It’s a question of government policy and administration.