MANAGING time and finances is hard enough but imagine if your child had autism and the funding in the government support package was cut.

That's what happened to Kathrin Baer, whose 10–year–old son Dean's National Disability Insurance Scheme support was cut by 30 per cent midway through last year.

It meant Kathrin could no longer afford crucial speech therapy sessions for Dean, and they had to cut back on physiotherapy sessions.

"Going to the physio is Dean's opportunity to build his core strength so he can participate in activities at school (even having the strength required to sit upright in chair at school) and work on his general coordination and fitness," she said.

"Dean has a really great relationship with his physio assistant who is able to push him out of his comfort zone and can practice managing frustration in a safe environment he is comfortable with.

"We had to prioritise occupational therapy which in itself is less often than he needs it.

"We are faced with the decision of do we want him to have support to work on his emotional regulation so he can manage when things don't go to plan, his social skills so he is better able to interact with those around him and maintain his friendships as he gets older, his fine and gross motor skills so he can actually write his responses to school work, play sport and sit in his chair in class, or work on basic self–care skills."

Kathrin said the cuts to her son's funding package do not make sense.

"I don't think they (the NDIS) read any of the reports they insisted we provide for them," she said.

"We provided reports from all his allied health team but they certainly have not provided anywhere what was asked for therapy wise.

"In the Freedom of Information request I made, they mentioned that we underspent on his last plan (which was his first plan ever) – there was $1000 left because of a variety of reasons including availability of services, learning who to refer to (we do not have support coordination), COVID appointment cancellations, and I was so cautious to not overspend so made sure I stretched the plan out over the full year.

"I thought I did really well budgeting, they thought it meant our therapy funding should be halved."

Kathrin applied for a review in August but is still waiting for follow up calls from the NDIS.

"I am on a Facebook discussion group with parents of children with autism and every day there are posts about funding cuts," she said.

According to NDIA, which administers the NDIS, "there is no directive to reduce funding to any NDIS participant plans, for any disability category".

A NDIA spokesperson said total support for NDIS participants with autism equalled $6.5 billion at December 31, 2021, and some 33 per cent of NDIS participants have autism (167,111 in total), making it the largest disability group accessing the NDIS.

"It is important to note NDIS participant plans can go up or down depending on an individual's changing disability–related needs," NDIA said is a statement.

"Funding for a participant's plan is based on the reasonable and necessary supports a participant requires.

"There are a range of reasons why a participant plan may go up or down, including up–front funding for equipment or transitioning to a more stable phase of support.

"Review outcomes are dependent on individuals' circumstances, and all NDIA decisions continue to be made in accordance with the NDIS Act."

Indi independent federal MP Helen Haines, said experiences like those faced by Kathrin and young Dean show accessing supports is "too difficult and frustrating".

"Even when someone is an approved participant, plans are getting cut in an opaque system that is difficult to challenge," she said.

Dr Haines said she had successfully advocated on behalf of many NDIS participants in Indi.

"It shouldn't be up to individuals to make time–consuming Freedom of Information requests to understand why their plans have been reduced, the system should be much easier to understand," she said.

"The rate of adverse decisions (cuts) appears to be on the increase, particularly in regards to people living with autism.

"I believe the government must invest properly in the NDIS, focusing on an adequately trained and qualified workforce.

"The NDIA staffing cap must be lifted so that NDIS participants in rural and regional areas can access the services they need without waiting months."

Dr Haines made a submission to the Tune Review into the NDIS, recommending participants be able to approve their plans before they are agreed with the agency, there be better training for planners, and housing be considered in the planning process.

She also recommended that plans in rural and regional Australia account for travel costs, where services are often harder to access.

"I call on the government to implement all the recommendations of the Tune Review and focus on improving the experience of families like Kathrin and Dean, instead of searching for ways to make accessing help more difficult," Dr Haines said.

Labor shadow minister for the NDIS, Bill Shorten, who visited Wangaratta last week, said he had listened to "people in Benalla, Wangaratta and Beechworth tell some disturbingly similar stories".

"There are clearly some big problems with the way the NDIS is being administered and the fact the experiences are so diverse is deeply concerning," Mr Shoten said.

"After nine years of mismanagement it is time for the NDIS to be run properly."