Botched renovations approved by the NDIS have come close to breaking Garry Saville, a recent widower and father of a daughter with a disability.

Key points: Garry Saville has spent almost 18 months trying to get botched NDIS renovations to his home fixed

Garry Saville has spent almost 18 months trying to get botched NDIS renovations to his home fixed The builder had no required permits and the agencies who arranged the work said they are not responsible

The builder had no required permits and the agencies who arranged the work said they are not responsible The work still isn't officially approved so Garry's daughter, who lives with a disability, can't move home

He has spent almost 18 months fighting to repair the works at his home, west of Ballarat — which were done without a building permit.

Mr Saville said the frustration is almost too much to bear.

"I am not a stupid person … this has got the absolute best of me," he said, tearing up.

But he has had no luck negotiating a bureaucratic maze that includes a care support service, an NDIS provider, the NDIS itself, and the builder who did the work.

In the meantime, because the work has not been officially approved by the local council, Garry will struggle to insure or sell his house and his daughter with a disability cannot move in.

Garry Saville said he is beyond frustrated with the NDIS. ( ABC News: Scott Jewell )

Renovations approved to help dying wife

In November 2017, renovations were approved by the NDIS for Mr Saville's home in Elmhurst.

The changes to the home were ordered to help care for Mr Saville's wife, Marilyn Lindsey, who died in January 2019 as the dispute continued.

Marilyn Lindsey died in January 2019 after living with multiple system atrophy, a degenerative disease. ( Supplied: Garry Saville )

Ms Lindsey lived with multiple system atrophy, a degenerative disease with symptoms including loss of muscle control and difficulties with speech.

She spent almost all of the last 14 months of her life at home and for most of that time, the fight over the NDIS renovations was a source of constant stress for the couple.

"It got that bad toward the end, Marilyn kept saying … 'Put me in a home, Garry. You don't deserve this'," he said, crying.

The dispute over the renovations began almost as soon as they were completed.

A certificate signed by East Grampians Health Service in December 2017 only covered the functional side of the work, for things like handrails that were installed to help Marilyn.

Garry Saville and his late wife Marilyn Lindsey in happier times. ( Supplied: Garry Saville )

Despite the supporting walls being removed and the doorways being widened, the builder — Maker Constructions Pty Ltd — never obtained a building permit.

The couple were unhappy with several aspects of the work, including water that pooled in the shower part of a large "wet area" bathroom and laundry.

They also objected to a temporary support beam installed after a support wall was removed.

Much to their frustration, fixing these problems turned out to be extremely complicated because of multiple parties involved.

Bureaucratic maze to fix the renovations 1. The agency that provided therapists to assist Marilyn, East Grampians Health Service, selected the builder. 2. The provider that administered Marilyn's NDIS plan, SWEP, hired the builder. 3. The NDIS paid for the work. 4. The builder, Maker Constructions, did the work.

Builder paid by NDIS provider, despite objections

Water pooling in the shower part of a large "wet area" bathroom and laundry was found to be unsafe for carers. ( ABC News: Scott Jewell )

Despite Mr Saville and Ms Lindsey's objections, in February 2018 the supervising provider, the State-wide Equipment Program (SWEP), paid the builder $32,850 — money from the NDIS.

Mr Saville eventually hired a registered building inspector to review the renovation.

The inspection cited numerous problems including the lack of a building permit and, crucially, found the water issue made the wet area unsafe for carers.

After the inspection, carers were not allowed to work in the renovated area.

"I had to reverse roles, I done the showering, looked after my wife, and the carer done the housework," he said.

Mr Saville continued to fight for the problems to be fixed, even contacting the then-minister for social services, Dan Tehan. But he is still no closer to a resolution.

The biggest consequence is being felt by Garry's 45-year-old daughter, Theresa.

She lives with an acquired brain injury and currently resides in a Melbourne hospital under the guardianship of Victoria's Office of the Public Advocate (OPA).

The OPA and Mr Saville want her to move home, so he can look after her.

But that can not happen until there is official approval for the renovations, which still do not have a building permit.

"The way it's going, I don't even know about the future of my daughter, or myself," said Mr Saville.

Frustrating cycle with no one responsible

For Mr Saville, it's a frustrating cycle in which no one is accountable for the botched renovation.

Both the service that selected the builder and the agency that administered the NDIS payment said it is not their responsibility to ensure the builder has all the required permits.

Garry Saville outside his home in Elmhurst, Victoria. ( Supplied )

The NDIS said it is not responsible either, and that its handling of the case has been cleared by the Commonwealth Ombudsman.

"It's a lot of duck-shoving, to put it mildly," said Judi Smith, a disability advocate who's been trying to help.

Garry complained about the work to the Victorian Building Authority (VBA).

As a result of their investigation, Maker Constructions is facing disciplinary action.

When contacted by the ABC about the works, the builder declined to comment.

But the VBA does not have the power to order the builder to repair the work.

"So we are left in no-man's-land, and it is unbelievably unfair," Ms Smith said.

"It goes against everything that the NDIS was ever brought in for."

Disability activists said dealing with problems and navigating the system is often a daunting prospect.

"I'm really sad to say that we hear lots of terrible stories," said Kirsten Deane, the director of Every Australian Counts.

"One of the huge problems of the NDIS is that there's this huge bureaucratic maze you have to work your way through, and there's no one there to help you."