I'm pleased to make a contribution on the National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021. My home, the Hunter region, was a pilot region for the NDIS in 2013, introduced by the Gillard-Rudd Labor governments. I always welcome the opportunity to speak on the NDIS because, unfortunately, it is one of the main issues my constituents contact my office about when seeking assistance.
This bill implements changes to the NDIS Act 2013 in response to the Tune review of the NDIS Act and NDIS participant service guarantee, and the independent review of the act by Ernst & Young in 2015. Other than the recommendations for the insidious independent assessments, which have caused such fear and anxiety for participants, Labor has been supportive of the Tune review's recommendations. Schedule 1 of the bill contains the participant service guarantee. This guarantee was an election commitment by the Morrison government to legislate time frames for NDIS decisions, which was also recommended by the Tune review. It's a damning indictment of this government and clearly demonstrates their attitude to the NDIS that they have not managed to legislate time frames for the NDIS decision in the last 2½ years. We are literally on the second-last day of the 46th Parliament and only now is the government getting around to legislating something they committed to at the 2019 election. What a disgraceful attitude. It is demonstrable of the contempt this government has for everyone who is participating in the National Disability Insurance Scheme.
Regarding schedule 1 of the bill, many in the disability community believe the proposed changes might create a backdoor for the government to achieve its original aim of independent assessments, which was to cut funding to participant programs. This was the government's intention, and, just because the minister has paused the assessments, given the government's track record it is not surprising they are trying in any way they can to make cuts to the NDIS.
In speaking on the participant service guarantee bill, it's relevant to share some of the experiences my constituents have had. I've been a member of this House for 8½ years, and one of the issues I'm most passionate about is the National Disability Insurance Scheme. The member for Maribyrnong, the shadow minister, is entering the chamber, and I want to recognise again his contribution, with Jenny Macklin, to founding this great scheme. It is a scheme that has changed the lives of so many people.
As I said, I was very proud that the Hunter was a pilot region for the scheme in the early years. In the early years it was very rare for me and my office to receive constituent inquiries on the NDIS. The system was generally working well. In those early years, there were certainly inquiries complaining about significant delays in getting responses from the agency and, of more concern, about participants and their carers getting no response to repeated general telephone inquiries. One mother I met in 2019 was so annoyed at receiving no return calls to her repeated inquiries that she travelled over half an hour to the NDIS office in Charlestown and literally spent hours and hours in the reception room refusing to leave until she actually got to speak to someone. This should not happen.
Participants and their families and carers have complicated lives as it is, without having to deal with a complicated and inefficient bureaucracy. Another shocking example that came to my attention a few years ago was a planner trying to cut funding to a young boy's plan because 'He has autism, and the plan isn't working, because he isn't getting better.' Let me repeat that: a planner tried to cut a young participant's plan because he wasn't recovering from autism. Anyone who has dealt with the challenges of autism, or knows someone who deals every day with autism, knows that you don't recover from it; you learn to live with it. Sadly, this is not an isolated case when I speak to disability advocates.
Another example from a few years ago was a participant who was told that they could not access music therapy in their plan. This was despite there actually being a line item for music therapy. To make matters worse, the parliamentary liaison at the time told my office that the participant could not access music therapy. I had to obtain confirmation in writing from the minister that the participant could indeed access music therapy. This is a shocking example of a participant receiving appalling service from the agency.
One of the most dramatic changes to the National Disability Insurance Scheme came when the government introduced independent assessments. Let there be no mistake: the Morrison-Joyce government have an agenda to continue to cut funding to the NDIS. There is no other explanation for these independent assessments than to cut funding to participants' plans. This is relevant to the participant service guarantee bill, because if plans are cut there needs to be a timely review process for participants. As an aside, I have never been contacted by a constituent who had an independent review and received extra support and funding after the assessment. They've only been constituents who have had their plans cut, in some cases dramatically.
The most shocking and cruel example I came across was a cut to another young boy who has a rare genetic disorder. His plan was cut from 35 hours of support a week to just three hours. This was a cut of $100,000, reducing this young boy's funding to a mere $8,000 a year. The horrific reason given by the planner was that now that the participant was at school this represented respite for his mother and he no longer needed the support. The first point here is that the boy's genetic condition required significant support for him when he was not at school. Secondly, his mother worked when he was at school, and work is not respite.
I ask the government this question: who is best placed to determine a participant's needs and support for their plans, medical practitioners and experts who have an intimate knowledge of their condition, or some random assessor who spends a few hours with them and then makes decisions which can have horrific consequences for people living with a disability? I am not convinced the Liberals and Nationals won't try and bring back these disgusting independent assessments, and only an Albanese Labor government will ensure this does not happen.
Unfortunately, over the last few months there has been a significant increase in NDIS inquiries to my office. Let's not forget that those needing support from the NDIS are some of the most vulnerable people in our community. They deserve dignity and respect in their dealings with the agency and should not have to endure long waits because of an incompetent bureaucracy.
Liv Kalavasi is a constituent of mine. She is seven years old and has Williams syndrome. I previously met with her mother Gemma, a really lovely and articulate woman who is passionate about the NDIS and her family. Late last year, her plan was cut by 45 per cent, from $36,700 to $20,300. Gemma's summary of this process is very relevant. These are her words—the mother of a participant: 'There is a real disconnect between the coordinator dealing with the participant and the person making the decision.' Gemma is now having to go through the arduous process of an appeal to the Administrative Appeals Tribunal after an independent review upheld the original decision.
Someone else in similar circumstances is Ian Waller from Belmont South. I spoke about the savage cuts to Ian's plans earlier in this place. Ian is vision impaired and the NDIA have, incredibly, cut funding for his guide dog. There are no words to describe how despicable it is. They have cut funding so that Ian does not receive any funding for his guide dog. Ian is also going to have to appeal to the AAT. In the meantime, with help from his coordinator, he's relying on assistance from a GoFundMe campaign to keep his guide dog. I want to thank NBN News for their outstanding work drawing our community's attention to Ian's fight. The donations have been generous and are a great reflection of the decency of the people I represent. I want to recognise and thank everyone who has contributed to the GoFundMe campaign, and in particular, to thank Shane Spruce, the owner of PETQuarters who is generously supporting Ian and his guide dog. But this should not be happening. The whole point of the NDIS is for participants to be provided with the support that they need to live in dignity and to fulfil their full potential.
In conclusion, as I've said many times, the National Disability Insurance Scheme is a contract from the Australian people to Australians living with a disability. It's a contract that says: 'No matter how your disability occurred, whether it was through birth or an accident, no matter whether you had insurance cover or not, we will assist you. We will make sure that you live a life full of dignity and respect, and we enable you to live to your full potential.' Unfortunately, under the nine long years of this Liberal-National government, the NDIS has not grown and developed as it was originally intended to, and people with a disability and their families and carers are bearing the consequences of the cruel conservative approach to government of the Morrison-Joyce government.