He charms all the wait staff with his beaming smile and infectious laugh, finding delight in the smallest pleasures, like the fresh cream on top of his favourite milkshake.

Mr de Kok is 30 and has lived with cerebral palsy all his life.

The condition means 24/7 care and specialised equipment for all his daily needs.

He is a participant of the National Disability Insurance Scheme, which is supposed to make life easier for him and his parents.

But navigating the scheme has been an uphill battle from day one, as his mum Lorraine de Kok explains.

She has welcomed the 29 recommendations put to the government in the new NDIS review but wants to see them put into action.

"I want to see laws implementing these recommendations," Ms de Kok said.

"They are good recommendations, we've been finally been heard, but we don't want it to be shelved like lots of other reports.

"We need to make them all accountable."

The report, prepared by former finance department secretary David Tune, focused on cutting wait times and removing red tape.

His report found, among a number of issues, that the scheme was too complex to navigate, too cumbersome, too ambiguous and was underfunded.

Ms de Kok and her family know all too well what it's like to be on the receiving end of the bureaucratic system, which costs around $22 billion a year to run annually.

It took over a year for them to obtain a shower chair for Nathan and are still waiting on more vital equipment.

"Nathan does not have the ability to perform a simple task like clearing his throat, so if a drop of it gets in his lungs he will develop pneumonia and die. It sounds dramatic, but that's what we live with every single day," Ms de Kok said.

"When it comes to the NDIS our lives - his life - is literally in other people's hands.

"All it takes is the stroke of a pen and we wait months and months for vital equipment.

"Even recently they tried to cut Nathan's funding by huge amounts on his new plan. When I stood up and challenged it, I ended up getting more funding than when we started, and other people aren't so lucky."

She said there was still a big gap when comparing regional services to metropolitan ones.

"In Warrnambool there's a shortage of high-needs occupational therapists, in fact we don't even have one in town ours comes from Ballarat," Ms de Kok said.

"What we need now is for the government to be proactive - there's nothing in that report that can't be implemented straight away.

"It's just common sense."

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