17/02/2016 6:01 AM AEDT | Updated 15/07/2016 12:51 PM AEST

Whatever Happened To The NDIS?

Our political leaders need to find a new sense of enthusiasm and urgency for the NDIS. It is the most important social reform in Australia since the introduction of Medicare more than 40 years ago, but it seems to be waning in political importance.

Robert Cianflone via Getty Images
MELBOURNE, AUSTRALIA - MAY 01: Australian Prime Minister Julia Gillard meets Sophie Dean (L) and Dr George Taleporos (R) from the disabled community after a press conference at the Commonwealth Parliamentary Office on May 1, 2013 in Melbourne, Australia. Gillard has announced that the Federal Government will increase the Medicare levy on income tax from 1.5 to two percent to help fund the National Disability Insurance Scheme (NDIS). The levy will begin on July 1, 2014 and is expected to raise around $3.2 billion annually towards the NDIS which is expected to cost $8 billion per year. (Photo by Robert Cianflone/Getty Images)

Julia Gillard and Tony Abbott were the best of enemies. For three years they struggled to find a subject on which they could be civil, let alone united. But the one thing even they agreed on, in April 2012, was that Australia should introduce a National Disability Insurance Scheme.

Both Labor and the Coalition put point-scoring to one side to do the right thing -- help Australians with disabilities. To help the Aussies who most need help. It was an historic moment, but sadly -- four years on -- the NDIS has become bogged down in a quagmire of confusion and political posturing.

Far from improving the lives of people with disabilities, the protracted roll-out of the NDIS is causing additional and unnecessary suffering to many. The agonisingly slow pace of agreement between state governments and Canberra over how the NDIS will work has led to a creeping paralysis of the disability care sector.

Queensland has yet to even sign a bilateral agreement with the Federal Government.

Although NDIS 'transition sites' are due to be launched in three regional communities in Queensland this year, there is no indication when the scheme will begin operating across the rest of the state. As a result, the uncertainty that has surrounded disability services for the past 18 months is worsening and we have seen a growing reluctance on the part of the State Government to release new funding.

Queensland has been slowest off the mark, but progress across Australia has been little better. And all the while, our charity has been called on to help young people who have suffered traumatic injuries or been diagnosed with debilitating diseases. Yet we cannot tell them when the NDIS will begin or how they should plan for their long-term care.

What makes the situation even more frustrating is that when NDIS funds -- eventually -- start flowing to the young Aussies we support, there will still be a huge shortage of suitable housing options for them to move into.

Around 7000 Australians under 65 are forced to live in completely unsuitable aged care facilities because there is nowhere else for them to go. An estimated $2.3bn of new building would be needed to provide the specialist accommodation required, but the NDIS will do nothing to directly stimulate construction.

Despite all the hopes raised in 2012, the outlook for young people trapped in aged care facilities remains very bleak.

What can be done to get the NDIS back on track?

I believe our political leaders need to find a new sense of enthusiasm and urgency for the NDIS. It is the most important social reform in Australia since the introduction of Medicare more than 40 years ago, but it seems to be waning in political importance.

We have had four Prime Ministers since 2012 and under each one the NDIS seems to fade a little further from view. The advent of the Turnbull government saw the disabilities portfolio disappear entirely as a separate ministerial entity. Responsibility for the sector -- and the NDIS -- now resides within the broad portfolio of the new Social Services Minister, Christian Porter.

The low priority given to the disability sector is replicated at state level, with the big-hitters usually assigned to health, treasury and education. In fact, the politicians' priority for the NDIS does not seem to be launching it at all -- but cutting its projected cost.

This year has already seen a raft of stories about the financial implications of the NDIS, and many in the disability sector fear cuts in spending which hasn't even occurred yet.

Our message to Canberra is clear: Hands off the NDIS cash. The funding must not be squeezed. As unpalatable as it may be to Treasury, the National Disability Insurance Agency should actually release more funding to encourage suitable housing provision if the NDIS is to achieve its aims.

Youngcare still believes strongly in the NDIS, no matter how frustrating the past few years have been. But we want to remind politicians on both sides that they themselves recognised our system of care was broken. It did not meet the needs of people with a disability and hadn't for a long, long time.

The NDIS will be a massive advance for people living with a disability. It will empower them and give them the financial clout to decide their own futures. But until it arrives, they will be dictated to by impersonal and under-funded government agencies.

Each day someone else is paralysed in a car accident or diagnosed with multiple sclerosis. It could happen to any one of us -- or to any of our loved ones. Let's stop delaying the NDIS and help people with disabilities build a brighter future for themselves.

If Gillard and Abbott could agree on that, why can't the rest of us?