The intention of the National Insurance Disability Scheme (NDIS) is not being delivered for a 38-year-old disability pensioner who is living in adverse conditions despite over $188,000 of funding being approved for his support.

Key points: Over $188,000 of funding approved for Mr Allen under NDIS

Over $188,000 of funding approved for Mr Allen under NDIS No money spent so far on daily activities and specialist behavioural intervention support

No money spent so far on daily activities and specialist behavioural intervention support Funding does not guarantee client will receive it

But NDIS managers have put the problem down to the disability support sector being in its infancy and because workers were not always available in all areas.

In the case of Bendigo man Warwick Allen, over $188,000 was allocated to him under NDIS yet much remains unspent, while he lives isolated in an unkempt house.

The 38-year old disability pensioner with mental health issues was diagnosed with Asperger's Syndrome at the age of 17 and had spent a greater portion of his life living in Sandhurst — Bendigo's former institution for people with severe disabilities.

While Mr Allen received some help under previous institutional care, under the National Insurance Disability Scheme (NDIS) he has no case manager, no caseworker or no key worker assigned to him.

"He has no one in Human Services [department] or anywhere else that regards themselves as having a responsibility for him," his stepfather, David Coxon said.

"All the people that should have some responsibility for him.

"None of them have actually come to this unit to see his physical living circumstances."

Mr Allen's lawyer said he needed an enormous amount of help and encouragement to participate in day programs and organise his life. ( ABC Central Victoria: Larissa Romensky )

No home support available

Mr Allen sits in semi-darkness in a room filled with rubbish.

He does not have the personal skills to maintain his home.

Food scraps and discarded packaging cover the entirety of the kitchen bench, and the floor is strewn from one end to the other with clothing and broken items.

"In the time he's been here his bed sheets haven't been changed in 22 months — his toilet hadn't been cleaned nor his shower," David Coxon said.

In the warmer months, towards the end of the day "the stench is unbearable".

"He tries to leave his doors open to let in some fresh air but it's nowhere near enough," said Mr Coxon.

Warwick Allen (left) and his stepfather David Coxon (right) in Warwick's loungeroom. Warwick often stays at David's home. ( ABC Central Victoria: Larissa Romensky )

At the mercy of government bureaucracy

Mr Allen currently lives in a unit at the rear of a Department of Health and Human Services (DHHS) owned facility, fenced off from the shared house.

Dinner is provided; left in the middle fenced off area between the two dwellings.

"I was up here one night when it was raining heavily, Warwick had to put on his rain hat and raincoat to go out and get his meal off a chair, which had been covered over with a plate to stop it from getting wet," Mr Coxon said.

Stepfather David Coxon visits as regularly as he can to take Warwick for a walk. ( ABC Central Victoria: Larissa Romensky )

Mr Allen's solicitor, George Ryan, is also both exasperated and frustrated by the governmental bureaucracy he said Mr Allen was at the mercy of.

"The living conditions Warwick is left to endure are scandalous. He has little ability to complain, or to see the Disability Act is complied with," Mr Ryan said.

Instead Mr Allen has an NDIS plan he does not understand.

"Its terms are vague and meaningless to anyone but insiders," Mr Ryan said.

Despite being allocated a total of $188,522.99 from October 2017, as of late April 2018, just over $4,000 had been spent, most of it on support coordination.

While he has a local area coordinator and a funded support coordinator under his plan, listing allocated funding for such items as daily activities and specialist behavioural intervention support, no money has been spent on these services thus far.

State manager concedes no guarantee under NDIS

For many people having direct access to their funds via NDIS, allowing them to choose their own providers, is a preferable option but for those with more complex needs and challenging behaviours it has proved problematic.

National Disability Services State Manager David Moody said under the transitioning scheme there was no guarantee.

"In parts of Victoria and Australia the development of the sector is still in its infancy," he said.

"That means that in some parts of Australia merely because you have significant funding for significant supports doesn't mean that in all instances you will get it."

Mr Moody said there simply was not a comprehensive coverage of "every conceivable possible support" that every NDIS participant might require.

Mr Allen receives food, in the form of cereals and milk for breakfast and an evening meal which is handed over the fence. ( ABC Central Victoria: Larissa Romensky )

While he is not over the specific details of Mr Allen's case he acknowledged the "terrible circumstances " of his living conditions and said it was unacceptable.

"Essentially, he could be one of the participants that's fallen through the cracks," Mr Moody said.

His advice was for a plan review, but a recent Commonwealth Ombudsman's report found plan reviews took about nine months.

In the event of another plan being drawn up only to bear similar outcomes Mr Moody conceded: "There's not a lot that can be done about it."

Who's responsible?

Program Manager Mental Health and Disability Advocacy at Victoria Legal Aid, Sonia Law said the complexity of the system even baffled lawyers.

"Lawyers at Victoria Legal Aid have certainly found it very difficult as people who know the system and who are used to advocating and asking for things and knocking on doors," she said.

While there were support coordinators in the new system they were not always available, or they lacked the skills.

"Or they might not be as active as case managers were," Ms Law said.

"It is really concerning if a person has support coordination funds coming out of their plan but no other funds and no other supports available."

Consequently many people that attended their first year plan reviews found unspent funds were met with a reduction of funding the following year.

Ms Law said it was unclear what recourse there was for a person in need of more intensive support.

"There is no enforceable obligation in the NDIS for you to get the services in your plan," Ms Law said.

She said Legal Aid's number priority was that a provider of last resort be identified and made transparent to people.

"So they know where to go because it is unclear," Ms Law said.

Warwick Allen struggles to keep his house clean. ( ABC Central Victoria: Larissa Romensky )

Someone to talk to

Mr Coxon said the NDIA had great teething problems.

"It's been rolled out too quickly. They haven't got enough of their own employees who have been trained. They are relying far too much on Human Services people," Mr Coxon said.

Ideally he would like to see his stepson living in an independent unit attached to a facility where he had access to the staff and where a lot of the chores were done for him.

"And Warwick can have some money to spent on activities and everything else," he said.

Mr Ryan said his exclusion from these opportunities was a denial of his human rights.

"Like all human beings he needs the opportunity to live with some people around his own age and share a sense of community with them, and to have opportunities to do useful work and improve his social skills," he said.

Mr Allen agreed and said he was lonely and in need of company.

"I need someone to talk to," he said.