In late 1984, doctors at Royal Brisbane Children's Hospital told Russell Milne his baby girl had a rare genetic disease and did not have long to live.

Key points: A Queensland father is fighting to get his daughter out of a group home

A Queensland father is fighting to get his daughter out of a group home The family's case is an example of how wrong things can go for people living with disabilities

The family's case is an example of how wrong things can go for people living with disabilities The father will make a submission to the royal commission into the treatment of people with disabilities

She was eight months old and was wasting away from severe malnourishment.

The father-of-two had been away working as a farm manager on Queensland's Darling Downs and sending money home to his family in Brisbane when he received the devastating news.

"I was the only income [earner]," Mr Milne said.

He had no idea how bad his daughter's health had become and found it hard to comprehend when doctors told him they thought Yoey had a disease that affected the mitochondria in her cells.

Preparing for the worst, he and his wife took the little girl home, put her in a gown made from her mother's wedding dress and had her christened.

Yoey was born at a normal weight, but later doctors told her parents she was failing to thrive. ( ABC News: Brendan Esposito/Supplied )

But Mr Milne did not want to give up: "I said, 'No I'm not going to let her die'."

He arranged for Yoey to be transferred to Sydney Children's Hospital, then at Camperdown.

Within days, medical staff decided the real cause of her illness was not her genes. Her mother was diagnosed with Munchausen syndrome by proxy, where a carer deliberately makes their child sick to get attention.

She was separated from her baby and Yoey started to regain weight.

Mr Milne said he did not realise what had been happening while he was away working.

"I had no idea this thing was going on with my wife," he said.

Since then, he has learned a lot more — the life-changing impact of a diagnosis like that, the controversy around it and how another condition might have been in the mix all along.

Mr Milne sent Yoey to hospital in Sydney to save her life, but he also started the fight of his.

Out of famine, into foster care

Yoey, aged five, was living with foster parents who wanted to adopt her. ( ABC News: Brendan Esposito/Supplied )

Following the Munchausen diagnosis, Mr Milne's two children were placed in the New South Wales foster care system.

For Yoey, that move would be the start of a three-decade journey.

Although authorities made no finding Mr Milne had deliberately ill-treated his daughter, because he had failed to recognise his wife's abuse, it took Mr Milne until 1986 to prove he was a capable father.

Mr Milne had to leave his farming life behind and navigate a maze of courts, government departments and paperwork to regain custody of his children.

"I remember in those days I would write everything on a typewriter and if you got one letter or word wrong, they'd send it back to you and you'd have to do it all over again," he said.

What is Munchausen syndrome by proxy? The syndrome was first documented in the late 1970s and has been the subject of controversy, but it is officially recognised as a form of abuse. Munchausen by proxy is considered to be attention-seeking behaviour, where the caregiver deliberately makes a child sick. The doctor who first documented the condition was, at one stage, struck off because of his role in wrongful child murder convictions.

Documents show he voluntarily spent two weeks in an intensive in-house program run by Montrose Child Protection Centre.

Mr Milne remembers he had to stay in the former orphanage for two weeks with his children while his caring abilities were evaluated.

He was monitored alongside a mother who had been raped and given birth and another mother who accidentally burned her child.

"Then they went through me with a fine-tooth comb," Mr Milne said.

After two weeks, one of his children was returned to him and he was allowed to retain custody of another, born in the interim.

But authorities decided Yoey should not be returned. She would remain in foster care — in a home where she was one of up to eight children.

"I still to this day don't know why she wasn't sent to Montrose to be with me," Mr Milne said.

Yoey's fate is sealed by a minister

As she grew up, Yoey lived in a foster home before being sent to live in group homes. ( ABC News: Brendan Esposito/Supplied )

By the age of two, Yoey had developed signs of autism, epilepsy and delays associated with her poor start to life.

After leaving his wife, Mr Milne moved interstate to look after Yoey's siblings.

From his new home in Tasmania he continued his fight to get her back.

Documents from late 1989 show then-NSW minister for family and community services Virginia Chadwick, now dead, intervened in Yoey's case.

She decided Yoey was settled and it was in her best interests to remain with her foster parents.

"It seems a matter well suited to subsidised adoption," she wrote at the time, referring to a mechanism that allows adoptive parents to draw a foster care allowance.

Yoey remained with her foster parents until she was 16.

Mr Milne saw her just once in 1991, but he continued to write letters to the department.

He received no response and said he was left to assume Yoey had died.

"We kept sending stuff but we never got any reply. I made her a jumper. They just cut us off," Mr Milne said.

He said he remembered sitting on the front steps of his Tasmania home "just crying" because he felt so hopeless.

Graphic warning: This story contains video that some people may find distressing.

An important phone call

When Yoey turned 16, her foster parents placed her in the care of a New South Wales group home.

By this time, Mr Milne had become a high school art teacher, remarried and had two more children.

That was the year Mr Milne got a phone call out of the blue from the government department responsible for Yoey's care.

"They said she wasn't with the foster home anymore. "She wasn't dead.

"I started swearing at them. Then they hung up. Then I had to start researching how to get her home."

In 2002, he started making his way through the legal hurdles needed to reunite with his daughter.

At a time when some parents were begging to get adult children with profound disabilities into care, Mr Milne was fighting to get his daughter back.

He said during this period he obtained a letter from Yoey's file written by a psychiatrist who assessed Mr Milne's first wife in the 80s.

In it, the doctor claimed to have also examined Mr Milne.

He penned a phrase that Mr Milne said still haunted him to this day: "I felt that at the very least he was complicit in the abuse."

Mr Milne said he had never met the doctor and his report conflated his ignorance of the neglect with actual physical abuse.

Mr Milne believes that was why he was not allowed to bring Yoey home.

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Reunited at last

When Russell Milne visits his daughter Yoey in Sydney, he wears a bright shirt because she likes the colours. ( ABC News: Brendan Esposito )

It would be four more years before Mr Milne and Yoey would meet again.

The setting for the reunion was shocking.

Mr Milne visited his daughter in her state government group home in western Sydney.

"It was like a prison — keys everywhere. All these holes in the walls," he said.

"There were four people there who shouldn't have been together and it set Yoey off all the time."

He was elated to see his daughter again, but he was deeply traumatised to see where she had ended up.

Mr Milne started lobbying the government to get Yoey into a better group home — he won that small battle, but admitted he made few friends along the way.

It was during this time he took Yoey to the beach for the first time in her life.

Space to play or pause, M to mute, left and right arrows to seek, up and down arrows for volume. Watch Duration: 27 seconds 27 s Russell takes his daughter Yoey to the beach for the first time ( Supplied )

"She wouldn't get out of the water," Mr Milne said.

"I was just amazed how they'd never taken her to the beach before."

But there were more surprises ahead.

A mysterious brown envelope

Mr Milne is a document man.

Over the years he estimates he has spent thousands on lawyers and Freedom of Information (FOI) requests to get access to Yoey's files.

"If you've ever done FOIs … it's about what they don't give you," Mr Milne said.

Russell Milne has fought to get his daughter back since 1984. ( ABC News: Brendan Esposito )

In 2007, he was sent a box of documents on Yoey and on top was a mysterious brown envelope.

In it were details of a sexual assault on Yoey, then aged 12, while she was in a respite centre away from her adopted parents.

"Someone obviously had a conscience and had put this at the top of the pile," Mr Milne said.

"I was just astounded."

Mr Milne made inquiries and no-one involved in Yoey's case knew anything about it.

"There'd been no collection of the DNA or anything, no convictions, not even a statement to the police."

Ever her champion, Mr Milne took the case to the Royal Commission into Institutional Responses to Child Sexual Abuse.

Despite the hard work of pro bono lawyers, Mr Milne did not get the outcome he wanted for his daughter.

"They didn't prosecute because Yoey has a disability and is unable to give evidence," he said.

He has applied for Yoey to receive funds from the redress scheme and hopes she can use any money to build a better future.

Two life-changing diagnoses

During this period, Mr Milne took Yoey to a new psychiatrist.

That doctor's diagnosis changed his understanding of Yoey completely.

"He said 'Oh this is Smith-Magenis syndrome'," Mr Milne said.

The doctor showed Mr Milne diagrams of distinctive facial features associated with the condition, including a square face, heavy brows, prominent forehead, broad nasal bridge and upward slanting eyes.

A broad nasal bridge is one of the common facial features of someone with Smith-Magenis syndrome. ( ABC News )

In documents seen by the ABC, the respected psychiatrist said Yoey had "a number of cardinal features", including failure to thrive as a child.

This new diagnosis rocked Mr Milne.

He wondered if it could explain why Yoey was starving when she was young and whether his daughter had potentially been removed from his care — and kept from him for three decades — for the wrong reasons.

Smith-Magenis is a chromosomal condition, which was only discovered in 1982. There was no blood test for it until recently.

Yoey's blood tests came back inconclusive, but the facial features are considered part of a diagnosis.

Yoey was removed from her parents' care in 1984. ( ABC News: Brendan Esposito )

Mr Milne said he suspected the original Munchausen by proxy diagnosis was probably also accurate.

But, on reflection, he said he believed it was not the only reason Yoey's life had been so tough.

Munchausen syndrome by proxy has attracted controversy since it was first identified by UK paediatrician Roy Meadow in the late 1970s.

In 2005, Dr Meadow was struck off the British medical register after it emerged his testimony in court cases had led to numerous wrongful child murder convictions.

Dr Meadow eventually got his licence back, but controversy over the syndrome has remained.

In Australia, the Queensland Supreme Court ruled in 2004 that it was not a "psychiatrically identifiable illness" and it was up to juries to consider motive.

Today it is formally recognised as a form of abuse in the 2013 edition of the psychiatry bible, the Diagnostic and Statistical Manual of Mental Disorders.

The $400,000 girl

Mr Milne said he believed Yoey's life was an example of just how wrong things could go for someone with a disability.

Yoey's current group home was run by the NSW Government until the sector was privatised under the NDIS.

During the State Government's tenure, Yoey started going blind from cataracts caused by medication and because self-harming had led to a detached retina.

During one visit, Mr Milne was walking through the home with a medical specialist who was using a video camera for an environmental assessment.

"We heard Yoey smashing herself up in a toilet," he said.

"If she doesn't want to do something, she goes to hit herself in the head.

"She's got extreme anxiety plus autism, so it's a massive [amount of] information coming into her and she can't deal with it."

At the time Yoey, who was supposed to have one-on-one care, was one of four people in the home, sharing one carer.

The video captured images of Yoey self-harming, but it also showed how with a few simple tricks Mr Milne calmed her down.

Space to play or pause, M to mute, left and right arrows to seek, up and down arrows for volume. Watch Duration: 54 seconds 54 s Russell tries to calm Yoey down after she attempts to self-harm

Mr Milne said under the home's new service provider, the Cerebral Palsy Alliance, conditions had not improved.

"She's gone downhill," he said.

Late last year, Yoey was hospitalised seven times in three weeks.

Mr Milne said the Cerebral Palsy Alliance had provided him with multiple explanations, ranging from stomach upsets to reactions to medications.

"They started blaming the NDIS. 'We don't get enough money from the NDIS to give enough staffing to Yoey'," he said.

He discovered that under Yoey's NDIS plan, more than $400,000 a year was allocated for her care.

In a statement, a National Disability Insurance Agency (NDIA) spokesperson said Yoey's case had been looked at in great detail.

"The NDIA has considered this case closely in order to be confident that the participant is receiving appropriate supports and services," the statement read.

It also said the funding in these plans was matched to the participant's needs and goals.

Much of the NDIS money goes to the alliance and is supposed to be for one-on-one care.

But Mr Milne said the way the organisation spent the funds meant there was sometimes only one carer at night for all four clients in the home, which he thought was not enough.

"She's just a walking ATM," he said. "It's abominable. My word for it is criminal."

Russell visits his daughter Yoey. ( ABC News: Brendan Esposito )

In a statement, a spokesman for the Cerebral Palsy Alliance said it was not able to comment on individual cases but there was confusion over the meaning of one-on-one care.

"This type of high-needs care does not mean having a carer watching one individual exclusively, 24 hours a day," the statement read.

"It does mean that an individual will have sole attention from a carer for a defined period of each day.

"We are very proud of the high level of care delivered by our staff who are dedicated to ensuring Yoey's health and wellbeing."

Mr Milne said he wanted Yoey at home in Queensland and he estimated that under the NDIS he could arrange full independent care for almost half of what the alliance spends.

He said he was planning on making a submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with a Disability, which began in Brisbane on Monday.

What will this royal commission look at? Its official title is the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with a Disability. The $527 million inquiry will run for three years and be based in Brisbane, but it will travel across the country to hear evidence. The royal commission comes after multiples reports of systemic abuse across state, federal and not-for-profit sectors. Two of its six commissioners have been criticised over perceived conflicts of interest.

"This royal commission, it may actually clean out a lot of the problems," Mr Milne said.

There are parts of Yoey's story that experts in the sector have heard many times before.

Executive officer of the Intellectual Disability Rights Service, Janene Cootes, said it was common to hear concerns about staffing, medication and quality of care from families of those living in group homes.

"But you don't see them all put together like [Yoey's] often," she said.

A lack of staff training and experience along with high rates of casual staff were also problems.

"Without consistency it makes harder," she said. "The organisations would say the NDIS rates don't allow them to staff enough."

Ms Cootes said group homes could be well run, but could also become "mini institutions".

Some clients were surrendered as children and their parents were actively encouraged not to return, she said.

"That means a lot of people who have grown up without a family."

The court of public opinion

Reflecting on his situation, Mr Milne's theory was that people could be quick to believe a father could hurt his daughter.

He said he thought the one thing that could explain the perplexing decisions of authorities were some of the documents that remained on his file.

"I've been tarred with the same brush," Mr Milne said.

Now a father of seven children, he pointed to their success today as proof of his ability as a parent.

"They're all healthy individuals and some of those children I had to raise as a sole parent in poverty and re-train as a teacher," Mr Milne said.

"There's nothing wrong with our family."

Mr Milne said he would continue his fight to reunite his daughter with the rest of her family simply because "she's missing".

He said he wanted to establish a home for Yoey in Queensland so her siblings could care for her after he died.

"Yoey has been deprived of her family. It's not the other way around," Mr Milne said.

"She's lived a life of hell."

He said Yoey's resilience had encouraged him to keep up the fight to bring her home.

"Basically she's an amazing human being," he said.

Notes: Yoey's mother and foster carers are unable to be identified for legal reasons and the ABC was unable to contact them for comment.