News | 20 February 2015

Home Sweet Home: the housing crisis for people with disability.


For all the money and resources being funnelled into the NDIS as the rollout continues, the lack of suitable housing remains a major stumbling block for many joining the scheme.

Young people in nursing homes?

No one understands this better than Dr Di Winkler, chief executive of the Summer Foundation. The Summer Foundation is a body which aims to help the more than 6000 young Australians who are stuck living in nursing homes.

Last year Winkler wrote an article for a major newspaper about a young man called James, who was admitted to a nursing home after an unprovoked assault resulted in a brain injury at the age of 18.

Winkler cited Summer Foundation and Monash University research which found that 53 per cent of young people in nursing homes are visited by friends less than once a year. A third never have the opportunity to go shopping, visit friends and family or enjoy other leisure activities.

Winkler called the plight of James and others like him “a sad reality for young members of the community with a disability”.

“It is here where their lives become melancholy,” she said. “They have low self-esteem and become despairingly miserable.”

While it is already clear the introduction of the NDIS has changed the lives of thousands of people for the better – and it has the potential to change hundreds of thousands more – the Summer Foundation report shows that the introduction of the NDIS would not reduce the number of young people in nursing homes because there is a shortfall in accessible housing.

Elderly parents despair for their children

And it’s not just young people who have housing issues. People across the sector experience difficulty finding suitable housing. For example, middle-aged people with disabilities living in the homes of their elderly parents may be unable or unwilling to maintain the family home after their parents die. Where then do they go?

Where is the plan?

It’s with these sorts of issues in mind that the National Disability Insurance Agency (NDIA) penned an options paper to address the housing crisis. The board-approved paper was duly passed on to government, yet it has now languished untouched for a year. And while the paper sits in the proverbial “too-hard basket”, the housing crisis only gets worse.

A range of new housing is needed

Here’s what Winkler said about the housing crisis in the sector:

“There is an urgent need for a significant increase in the scale and range of accessible and affordable housing for people with disability.

“For the past 20 years, the group home has been the dominant model, with people expected to live with five or more others. But group homes do not work for everyone. Many young people in nursing homes acquire their disability as adults; some have partners or are parents. They want to live in their own homes.”

And here’s what Graeme Innes, chairman of the board of Livable Housing Australia, said in a recent address to the National Press Club: “The debate over the National Disability Insurance Scheme has moved disability more into mainstream conversation. There is not much livable-design housing yet, but more than there was. And greater government and industry support needs to occur fast, if the aims of the NDIS are to be achieved.

“A voluntary model was agreed as a Rudd government initiative, but industry and government are still on their way to the party.”

The sort of housing required by NDIS users can range from simple suburban houses or apartments with proper wheelchair access, to something a little more sophisticated.

Winkler’s Summer Foundation recently bought two apartments close to train stations and shops, which maximise the residents’ independence and inclusion and minimise transport costs and reliance on paid support. If necessary, residents can use a tablet or smartphone to control lighting, heating, cooling, blinds, doorbells and doors, and to contact 24-hour on-call support staff.

That sort of living might be a dream for most, but experts, advocates and support providers across the sector have called on the government to try to make it a reality for as many NDIS users as possible.

One part of the solution, for instance, could be for the NDIA to use its massive purchasing power to underwrite – not own in its own right – the buying purchasing of houses by others, so that private and community sector developers and providers could build the right sort of houses in the places they’re needed and at rents people with disabilitiesy could afford. That’s just one option of many more possibilities. We should stress that that is not an official policy, but it’s an example of the sort of far-reaching creative thinking required here.

Release the NDIA housing options paper!

What we know for sure is that a solution to the housing crisis facing people with disabilities must be found. Releasing the NDIA board’s housing paper is an essential next act.

The housing paper was and is a good idea by an NDIA board that understands the challenges ahead for rolling out the NDIS on time, within budget and as intended. But no one except the NDIA board and government has seen what it contains. How can we work together – people with disabilities, families, carers, support or housing providers, the NDIA and governments – if we can’t even discuss the ideas and options we know have been canvassed by the board’s paper?

Every Australian Counts believes the path ahead is clear. It’s time government took housing out of the too-hard basket.  It’s time to release the NDIA options paper and engage the whole community in discussing and developing solution to the housing crisis that limits the hopes of people with disabilities and threatens the successful roll-out of the NDIS.

TAKE ACTION: Take 1 minute to ask the NDIA to release their Disability Housing Options paper.

John Della Bosca is national director of the Every Australian Counts Campaign.


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December the 13th was a very special day. It was the day my son and daughter moved into their new shared accommodation home called Karroong.

They were diagnosed in their teens with Kufs Disease, a neurological condition that causes the dead brain cells to accumulate and prevent signals getting through. Resulting in epileptic seizures, lack of balance and a rapid deterioration of normal brain function.

When trying to support them both in private rental units, it soon became very apparent how vulnerable they were. They were swindled out of money and possessions and were easy prey to unscrupulous door to door marketers. Support such as meals on wheels and home help didn’t work, the kids would not answer the door because they were afraid.

Having witnessed the decline and death of their mother in her early 40s, they were fully aware of what lay ahead. I never once heard a word of complaint. Sure I heard the occasional “This Fu****** sucks”, but they just kept soldiering on. They never, never lost their sense of humour.

Nursing homes or “aged care facilities” are great places, if you’re in your eighties and on the slippery slide to meet your maker.

But when you are a young person it can be a living hell. I remember asking Craig what the food was like and he said “mush, slush and more mush.” Care was adequate but staff found it difficult to handle the energy levels of younger people not content to sit around all day and reminisce. They needed loud music and chewable food. Rebellions occurred. One solution was to get Craig a punching bag.

I feared the call saying: “ we can’t cope with this behaviour you’ll have to come and get them.” It’s hard to describe my feelings during this period, guilt helplessness and overwhelming sadness. Visits were traumatic and very depressing. The only thing that kept me going was the absolute certainty that had I not followed this path, they would both have died sooner.

When we both saw Karroong Nicole said “This is my home and I love it”. Craig said “When can I move in?”. When I visit them now and see how happy they are I come away with a smile on my face and a positive feeling about the future. We are made to feel welcome by everyone there, and although we can see the rapid deterioration with the kids it’s a good feeling to know they are happy, safe and loved.

The journey for Craig will soon end but I know the best people did the very best to give him as much quality of life as possible.

God bless them all.

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