Helen Polley (Tasmania, Australian Labor Party) Share this | Hansard source

I rise to speak on the National Disability Insurance Scheme Amendment (Streamlined Governance) Bill 2019. The amendment only focuses on the governance of the National Disability Insurance Scheme and appointments to the board of the National Disability Insurance Agency and the Independent Advisory Council. This bill only relates to matters between governments and has no impact on people's access to the NDIS or the supports available to NDIS participants. But what we really need to do is focus on fixing a system that is broken. For far too long, the scheme has been without a leader—at a crucial time of rolling out the NDIS. My understanding is it was only this morning that a new CEO was appointed.

The National Disability Insurance Scheme was introduced under the previous Labor government. It is a scheme that was designed to give people who are living with disabilities a chance to have a choice and control over their lives. While there are some good experiences around people accessing the NDIS, there are also many horrific stories of those who are missing out due to the whole bureaucratic process and a process that is bogged in the sand.

Recently, in Launceston, the shadow minister for the National Disability Insurance Scheme, the Hon. Bill Shorten, and myself hosted a round table to meet with participants and providers. What we heard was a scheme that is failing. During our discussions, we met with a participant who is suffering from an acute degenerative disease that is terminal. Ms Piper has been sleeping on a couch in her lounge room for nine months. This is due to delays in receiving an answer to the bedroom modifications from the NDIS. This is a terminal woman who is having to sleep on a couch in her own lounge room because she can't get advice from the NDIS. Ms Piper would be in pain, as the couch is not necessarily comfortable, especially with the disease that she has. She's at risk of getting pressure sores that could very well lead to bigger health problems that could potentially mean her having to stay in hospital.

The unfortunate part is that this is not the first time that Ms Piper has waited on the NDIS. She had to wait six months for bathroom modifications, and then still didn't receive an answer. She ended up having to use her own savings so that she could use her own bathroom. She was very frustrated, as you can imagine. Having to wash in a bucket is not something that you should be doing as a recipient of the NDIS, and certainly not when you have a terminal disease. It's just not right. I found out that the NDIS rang Ms Piper the day after her story made the local news. Only yesterday, they approved the plans for the bedroom to be modified.

Why should families have to get to the stage that they must lobby their local senator and members of parliament? Why should families have to go to the media to make their story highlighted in the hope that they can get some support to get answers? I know from the shadow minister responsible, the Hon. Bill Shorten, that this has happened every time he's held forums around the country and participants have told their stories—they receive a phone call. That's great for those individuals, but it shouldn't be that you have to go to a forum organised by the Labor Party before you get the assistance that you deserve.

Can I say that Ms Piper's situation is not an isolated one. Other families have had their stories put out into the public domain. Some people find it hard, as they don't like to have their private lives made public. Ms Piper and her family should not have this stress for over 12 months while they're constantly fighting the government for the assistance that they need. What Ms Piper and her family should be doing is making lifelong memories for the future because of her particular circumstances so that she can leave some good and happy memories for her family—not further stress, not further pain and certainly not sleeping on her couch. Communication is a big concern when dealing with the NDIS. Emails go unanswered, phone calls are never returned and there is no consistency in the information being provided. People can ring the 1800 number and ask the same question three times and get three different answers.

Another concern is the time delays people are experiencing, especially in Launceston, my home city in the electorate of Bass, where only a skeleton staff are working. Plans and plan reviews are taking longer than needed. As a result, people are left without plans and with no money for the supports. Providers are doing love jobs as they're propping up the scheme by providing support with the verbal guarantee that they will get paid by the scheme, only to then be told that they won't be getting paid at all. Providers can't afford to do that. Businesses are writing off thousands of dollars in debt they will no longer get as they must still pay their staff and overheads while trying to be a viable business. On the one hand the NDIS is encouraging new innovative businesses to come on board, yet on the other hand it has no incentive to make businesses want to stay when there are delays in payments or no payments at all. No business can continue under those circumstances over time.

Delays in planning approvals and delays in communication are adding to the stress of participants and their families. This all comes to the outrageous underspend of $4.6 billion in the NDIS by this government just so that it can bring down a budget with a surplus. What I ask is: at what cost? The cost is to the most vulnerable in our community. The delays in participants' plans are creating bed blockages. Currently at the Launceston General Hospital there are at least four people who are waiting to have their supported independent living plans reviewed so that they can move into a house that has been specifically built for them. To put it into perspective, we have a brand-new house sitting empty while beds in hospitals are being used by clients who don't require hospital care.

In Launceston, participants are waiting up to 18 months to see allied health professionals. A young mother has just brought her situation to my attention. Her young son needs OT assistance. She's been told she'll wait for 18 months, but that doesn't guarantee that he will ultimately get the services that he needs, and it certainly doesn't guarantee he'll get them at the time he needs them. These services need to be delivered in a timely manner. Why should a young boy and his family be so stressed because the NDIS can't ensure he gets the therapy he needs? Without that therapy, the consequences to his future education are adding more stress onto his family. The time delay for people waiting for speech and occupational therapy and physio can mean that they are not getting the support that they need. Research shows that early intervention in speech is extremely important. Children having to wait these ridiculous waiting times will miss out on therapies that may help them speak, walk, write—the list goes on and on.

Service providers have concerns. One in particular has 35 residents living in a large residential facility in Hobart. This provider is working with their clients to give their clients choice and control over the type of care facility that they would like to live in. But the problem that the provider faces is not knowing whether their clients will qualify under the funding model for specialist disability accommodation. This lack of clarity over the rules and implementation of the rules makes business wary of taking on innovative ideas, fearing they will be left picking up the expenses if the NDIS pulls the pin.

One participant—for privacy reasons I'll refer to her as Belinda—is currently living in a rental property with easy access for her wheelchair. The downside is that the owner is selling the property, and Belinda is required to relocate. The housing crisis in Tasmania is bad, but it's even worse when a person has limits on their mobility. Belinda has approached the NDIS for a plan review and was told she would hear back within two weeks. She has now been waiting for seven weeks. Again, the lines of communication are broken. No-one is taking responsibility, and this waiting game could potentially strip Belinda of her freedom to live independently. Belinda could have to move into a nursing home at the age of 53. That's just not good enough.

That was not the intention when the previous Labor government rolled out and introduced the NDIS. Under this current Liberal government the NDIS system is broken and urgently needs repair. It has gone off the road and, quite frankly, it's bogged in the sand. While the scheme is kind of working for some people, for others it is not. The NDIS is a bureaucracy. Service providers are having to fund the gaps that have been created. There's not enough transition support and not enough planning on how to increase the workforce in disability to encourage people to take on job roles to support people with disabilities.

Recently in Launceston the local Liberal member for Bass, Mrs Bridget Archer, held a forum for NDIS participants. In fact she planned and advertised for three forums but had to cancel two of those. As her advertisement had stated this, the local newspaper questioned her over her commitment to the other forums and why they had to be cancelled. But the invitation was for current participants only. What about those people who are waiting to see whether they can access the NDIS? After advertising the sessions, she ended up running only one. I can say with a great deal of certainty that, at the one and only session that did go ahead, there were only five participants. In fact she had more representation from her own office and the NDIS office than she did participants. Maybe people were too scared to turn up and scared that they might be blacklisted for speaking out.

What Mrs Archer fails to realise is that there are many people in Launceston who are transitioning onto the National Disability Insurance Scheme and are waiting for plans, waiting to even meet with a local area coordinator. This is an issue, as these people are struggling each day with limited access to services. Recently I heard of a gentleman in Launceston who was unable to meet with the NDIS, due to time delays, who was walking from Launceston to Rocherlea, a nine-kilometre walk. The gentleman has a developmental delay, also has issues with his legs, was on a disability support pension and was unable to afford a taxi or a bus. How can Mrs Archer know that these are the real problems for people if she excludes them from coming and having their say to be able to highlight these problems that are occurring in her own electorate?

I wonder if Mrs Archer knows the reasons people are having such long delays to access the system. In Launceston the NDIS office has had high turnover of staff. Now the office is understaffed and is going to be advertising for more staff. You can't blame the staff for under-resourcing. You can't blame the staff for resigning and leaving their jobs, because they're so badly under-resourced. Why would this government not have already advertised for staff, knowing there's a backlog of people waiting to access the scheme? The staff in the local office at Launceston are working as hard as they can. But we are hearing that the staff are going on sick leave. They are stressed. The pressure of the workload is just too high for some of those individuals. This just isn't acceptable.

In Tasmania we're hearing that there is a shortage of supports and that this shortage of supports is seeing people being unable to access the services that they have been funded for. Participants are finding it hard to get reports written to show evidence of their needs, as they are waiting up to six months and beyond, and some providers' books are closed to new participants. The Liberal government needs to act now, to look at the issues and to fix them. There is no point holding discussions if you're not really interested in hearing about the problems and you don't have any influence—which, obviously, Mrs Archer, the local member, doesn't have—to fix the problems and to give the support that is needed to participants and to staff. They have taken one step, after more than 170 days, to finally appoint a CEO of this important organisation, but people with disabilities were promised choice and control. It's about time this government allowed people this right, instead of holding them to ransom.

Labor on this side of the chamber will continue to lobby and advocate for people with disabilities until this government show compassion to the people who are struggling with a system that is broken and a system that needs urgent attention. They should be doing everything that they can to ensure participants have access to the services that they need, and the local member, Mrs Archer, and the Liberal Senate team in Tasmania should do whatever they can to ensure that the University of Tasmania introduces more courses so that we can have more OTs, more physios and more allied health professionals trained and educated in our home state so that we can take that step that is needed to train and skill up the people who are needed and will continue to be needed around not only disability but also aged care. If we educate those people, we will then have a better chance of keeping them in the state.

But what I hear from those opposite is deadly silence. As I said, when Mrs Archer advertised for three forums, she only wanted to hear from the participants. And I can assure you that, of the five participants who were there, three of those are people who I know and who have come to me for assistance. So what is Mrs Archer, as the federal member and as a member of this Liberal government, really doing and what influence, if any, does she have to ensure the people in her electorate of Bass have access to the OTs, to the physios and to having their plans reviewed in a timely manner? And what is she doing to support providers?

I want to put on the record how much the participants and the providers appreciate the fact that Bill Shorten took the time to come to Launceston and to Hobart to listen to the real concerns. We didn't want to hear about just the good stories. Obviously we wanted to hear about the things that are working, but, more importantly, we wanted to hear about the concerns that are had so that we can play our role in making sure that this government is held accountable. Nothing less will be accepted.

Debate adjourned.

Ordered that the resumption of the debate be made an order of the day for a later hour.