Jess Walsh (Victoria, Australian Labor Party) Share this | Hansard source

I also welcome the opportunity to speak about the National Disability Insurance Scheme Amendment (Streamlined Governance) Bill 2019, because this bill screams that the government has its priorities completely wrong when it comes to the NDIS.

There are urgent problems for NDIS participants and their supporters, but instead of addressing those problems the government is holding yet another review. And then, with this bill, it is pre-empting the findings of that review. There have already been 20 reviews into the NDIS, and it's now time to get on and invest in solutions. With this latest strategy, the government is not even focusing on the most pressing problems in the NDIS but instead on the matters that are covered by this bill. So let's look at what this bill does and also at what it doesn't do.

The bill seeks to change the process for the Minister for the National Disability Insurance Scheme to consult with state and territory governments around the appointment of board members to the NDIA and to the NDIS Independent Advisory Council, other than the chairs of those organisations. In effect, this bill means that agreement from only a majority of state and territory governments will be required for those appointments when, at the moment, agreement by all governments is required. That could have the effect of reducing the participation of the states and territories in the extremely important governance decisions in the NDIS. Today, states and territories are absolutely critical and crucial in the delivery of the NDIS, and that critical role is just not recognised in this bill. That's why Labor is not keen on the introduction of the term 'host jurisdiction' in place of 'state and territory', because that change appears completely unnecessary. It devalues the role of the states and territories and it does nothing to address the real problems faced by NDIS participants today.

Let's look at what this bill doesn't do. What it doesn't do is to provide any help to get more services out to NDIS participants who are desperately in need of those services today. Today there are tens of thousands of participants, carers and service providers who are battling through severe levels of dysfunction in the way that the NDIS is administered, trying to get access to funds and access to services. Right now, the money is just not getting out to the people who need it. That is no surprise, given the government has underspent $4.6 billion on the NDIS—$4.6 billion! That is a lot of money. It's real money; it's real money that could have gone to participants and ensured that children weren't waiting for over a year to get a wheelchair. It should have gone to participants to make sure that they don't have to set up GoFundMe pages because they think that might be a quicker way of getting assistance than trying to navigate the NDIS.

As we know, the Prime Minister says that this underspend is because the NDIS is a demand based program and that there is just not the demand for the services. Well, that is complete and utter rubbish. It is completely ridiculous. It is not that there is less demand from Australians with disabilities; it's that they can't successfully navigate a system that has a whole lot of problems that bar them from accessing the services that they need. The demand is just not being met today, and there are far too many people who are having to go through hell and back to get access to the funds and services they need.

The NDIS is a great Labor initiative and we are proud of it, but it hasn't been implemented properly by this government. Let's take a look at the condition of the agency that is supposed to be administering the scheme. There is a real lack of representation and understanding of Australians with a lived experience of disability in the NDIA. A huge problem is the understaffing crisis, which is leading to longer wait times and less access to services because of the government's arbitrary and dangerous staffing cap. I do congratulate the disability activists and the Community and Public Sector Union for their advocacy in pushing the government to deal with this staffing cap and add 800 much-needed extra staff, but the NDIA remains chronically understaffed, and the government haven't removed the cap; they've just reset it. To top it all off, as we know, the NDIA was without a CEO for months, and it's seen an exodus of senior staff from its ranks. All of this is having a huge impact on the lives of the people who need assistance and services the most.

While the government continues to turn a blind eye to the problems that are plaguing the NDIS today and tries to pretend that everything's fine and there's just no demand for the services, we are constantly hearing about the issues faced by those trying to get access, and everyone in this place is hearing these problems. I know that my office and the offices of my colleagues receive a nearly constant stream of requests for help from our constituents in dealing with the problems of the NDIS, but, through a lack of leadership, people are falling through the cracks as the rollout of the NDIS continues, and this is what we're hearing time and time again from those on the ground: the participants, the carers, the providers and the state and territory governments.

The stories of people who are contacting our offices and the stories that are featured in the media are incredibly upsetting. Can you imagine being permanently disabled but having to come in every year and prove it? Can you imagine having to get multiple therapists to provide proof because someone decided that one therapist's proof wasn't quite enough? How would it make you feel to go through that every year, often getting a different NDIS plan depending on which NDIS planner you see? There is very little consistency in this scheme, and navigating the system is an absolute nightmare for participants. Families are often asked to provide reports, and then there's a delay, and then the planner they've been seeing at the agency changes, and the new planner wants new information. They want to see everything again, and they decide that you don't qualify. You are then forced to appeal.

What is really concerning is not only that the number of appeals is increasing but also that the number of families that have to engage a lawyer to help them navigate the system is increasing as well. You should not need to engage a lawyer to access the support that you need for your child with a disability or for yourself. You should not have to access a lawyer. And what about those NDIS participants who are trying to navigate the new arrangements for access to transport services?

Taxi allowances in the NDIS are so inadequate that people are using them up within weeks, when they are meant to last for a whole year. If you live in the bush, this transport is really the difference between being able to get out and, as Mr Morrison likes to say, have a go or being stuck at home quietly by yourself, isolated and unable to get out and participate in the broader community.

These failings in the government's rollout of the NDIS have real consequences for real people. They have real consequences in my own family. My nephew is an NDIS participant. Cenk is a beautiful, happy 15-year-old boy. Both his parents—my sister and her husband—are absolutely devoted to him. Cenk has autism and he is entirely non-verbal. In addition to that, he needs help with the basics of life, like showering, getting dressed and going to the toilet. His difficulties communicating can lead to very challenging behaviour. One minute he can be very sweet, content and happy and the next minute he can fly into a fit of frustration and rage. His parents do an absolutely amazing job, but they really need help. Cenk attends a specialist school, and that school is focused on his needs. But he may need to live with his parents throughout his adult years. His parents—my sister and her husband—need help, they need respite and they need qualified, skilled and consistent help at home.

Let me tell you a little bit about my sister's experience in trying to navigate getting access to that support, because she has found the process of negotiating the NDIA absolutely disempowering. She herself is a qualified teacher of children with disabilities, and she has strong networks of families who are facing similar challenges. So she, you would imagine, would be very well placed to navigate the NDIA and to advocate on behalf of her son. But she has been absolutely overwhelmed by the hoops that you have to jump through to get help, the barriers that appear to be put in your way.

The first program provided to my nephew was completely inadequate. It left them without help, it left them frustrated and it left them completely overwhelmed. What they need most is respite and help at home—someone to meet my nephew at the bus and spend two hours with him before his parents get home from work, someone who might be able to let my sister and her husband get out of the house from time to time. The first program offered very little funding for respite. It did, to be fair, offer funding for other programs, but those programs were difficult for her to access. The money was tied to certain programs which she couldn't find anyone to deliver and programs which did not meet her core need of respite. Meanwhile, other families that she knew who had children with very similar needs were being allocated either much more help or, like my sister, not enough.

To the participants of this program the outcomes seem entirely unfair, entirely arbitrary and, in many cases, unreasonable. People trying to navigate the system are constantly worried about whether they're doing a good enough job. People find the NDIA process adversarial. They are made to feel like they are gaming the system when they are just trying to get assistance for themselves and for their family members. People are constantly worried about whether they're doing a good enough job advocating for themselves or advocating for the persons with disabilities that they're assisting to get help, whether they're saying the right things, whether they're providing the best information, whether they're navigating the system as best they can and, crucially, whether anyone is listening and whether they will be heard.

Within all of this my sister decided to seek a new plan. Again, the process was absolutely frustrating and disempowering—again, frustrating and disempowering for a person who is very well qualified to navigate the system. Every time she goes to the NDIA she sees a new person and has to tell her whole story over and over again. As of just last month, the NDIA decided to more than double her core funding in recognition of Cenk'ssignificant disabilities and significant needs and in recognition of how little assistance she was already receiving. She's finally found a person who manages Cenk's routines and behaviours, and she does have the extra help that she needs. But let's be clear: it should not have to be that hard. Again, she's a qualified teacher of children with disabilities, advocating on behalf of her son. Imagine if you had to go through that to advocate on your own behalf. I think everyone here knows that I have barely scratched the surface when it comes to these problems with the administration and implementation of the NDIS.

The government's determination to tear down the NDIS instead of building it up shows how little compassion this Liberal government has. Its approach to the NDIS is like so much of what this government does, like attacking the most vulnerable people in our community, attacking people on social security with mandatory drug tests, stigmatising and penalising Newstart recipients with restrictive cashless cards, telling pensioners that their pension is 'generous', and doubling down on the arbitrary, stressful and draconian robo-debt scheme. All this shows no heart and no compassion.

This is a government that does not stand up for Australians with disability. It's a government that does not stand up for ordinary Australians, full stop. They won't stand up for you if your child has to wait for over a year to get a wheelchair. They won't stand up for you when you're told you're not disabled enough. They won't stand up for you if you think that starting a GoFundMe page is going to be quicker and more effective at getting the funding and support that you need.

This whole process of navigating the NDIS needs to be quicker. It needs to be easier. It needs to be simpler for participants to manage and take control of their own plans. Right now, today, what I hear from NDIS participants is that they have to learn a whole new language in order to be able to navigate the NDIS with any degree of success.

We really need to see staff levels increase in the NDIS to help clear the huge backlogs of people who are waiting for help. It is fantastic that advocates have been successful in raising the government's staffing cap. But let's be clear: more staff are needed. The government have just moved the staffing cap; they haven't abolished it, and they need to abolish it.

Most of all we need to make sure that the NDIS is properly resourced. With all of these problems that we are all hearing about, there can be no more convenient underspends on the NDIS—in the order of $4.6 billion—just in order to prop up the government's budget bottom line. There is already a huge list of issues that have been identified with the NDIS, and really what we all need to see is the government getting on and fixing those problems. We don't need a review that the government obviously isn't serious about, and we don't need this bill.

If the government were serious about the NDIS, it would focus on the real issues that are facing participants today. Unlike this government, Labor will always stand up for Australians with a disability, their families and loved ones. We conceived and established the NDIS. We can imagine the future that it could have. We can still see the hope that it offers so many Australians, and so we will continue to tell their stories in this place and expose the government's neglect of the NDIS and its participants. We will keep fighting for the participants of the NDIS.