Thank you to Home Instead Wollongong for inviting me to speak today and thank you to Debbie Atherton for your earlier presentation.

 

I would first like to acknowledge the traditional custodians of Dharawal country, the land on which we meet and pay my respects to Elders past, present and emerging. I would also like to extend my respect to any Aboriginal and Torres Strait Islander people present here today.

 

This year saw a Labor government elected for the first time in nearly a decade. And it was during the last Labor government over ten years ago, that the hard work began on developing a new system to care for people living with a disability in Australia. This hard work would eventually lead to the conception, trial, and implementation of the National Disability Insurance Scheme. A major piece of public policy, initially designed to put people living with a disability right at its centre.

 

To ensure that they had choice and agency when it came to their care.

 

But I know - that as NDIS providers yourselves - you have all faced extremely challenging times over the past several years – and especially the past two years. A scheme which was supposed to build trust and positive relationships between clients and providers has fallen off track.

 

I have advocated on behalf of so many people who have encountered problems or unfairness with the NDIS for almost a decade. I know just how bad it has become.

 

One case that you may be aware of through media stories, unfortunately over a number of years, is Professor Justin Yerbury AM.

 

Professor Justin Yerbury is the Professor of Neurodegenerative Diseases at the Illawarra Health and Medical Research Institute at the University of Wollongong, managing 17 people in his research team.

 

Justin was also diagnosed with Motor Neurone Disease in 2016 and is completely paralysed and on a ventilator for life support. Justin has faced numerous barriers to living life to the best of his ability. There have been constant obstacles to his success and even to his life in general.

 

I have helped Justin and his smart, amazing and dedicated wife, Rachel who is also his fiercest advocate, time and again to deal with challenges and the unfairness that the bureaucracy has thrown at them.

 

I first supported Justin in 2018, when he was in Intensive Care, and the NDIA denied him a wheelchair to fit his height as he is very tall – Justin used to play basketball for the Illawarra Hawks.

 

I had to fight, what I felt at the time was a really long and hard battle with the NDIS, to have the case re-assessed and the wheelchair was funded, along with other disability supports required. We had had a few cases in Sharon’s office but when I look back now, this really was just the beginning of many battles with the NDIS that lay ahead.

 

While not directly related to the NDIS, in 2020 Justin sought to challenge a decision made by the National Health and Medical Research Council, based on equity. I liaised with the Minister for Health advocating to ensure that Justin’s matter was given due consideration. The decision was reconsidered and the Research Council acknowledged the barriers to access by disabled academics. Justin then had an opportunity to assist the council to refine their policies on achievements relative to opportunity which was a great outcome.

 

Justin and Rachel then had further issues just this year with their plan. Justin had a review in September 2021 and submitted the plan and they were then kept in limbo without approval for over six months. The stress that this uncertainty caused the family was just horrid. We advocated, again, and finally it was sorted out and we managed to get the plan that they had submitted approved.

 

My heart breaks every time I have to go in to bat for this family and every family I have advocated on behalf of. It’s just not right. People living with disabilities should not have to battle this hard to live their lives to the best of their abilities and should not have to fight so hard all the time. This not only places stress on them and their families, it also places stress on the support workers who are left in limbo too.

 

Unfortunately, it doesn’t just end there. I read with horror the article in the Illawarra Mercury where Justin was denied access to a seven-night cruise that he and his family had booked. A cruise that should have been a memorable and special time with loved ones, but instead caused pain and frustration.

 

For four months they had sent countless emails to the cruise provider and filled out the necessary special needs forms so that Justin could travel with them. They received no objections and travelled to Sydney only to be told on the day, at the terminal, that Justin would not be allowed on the cruise. And despite getting Justin’s neurologist on the phone to advise the ship’s doctor that he was currently stable. They still denied him. This was after spending $4000 to courier Justin’s equipment to Sydney.

 

To end Justin and Rachel’s story on a more positive note, I am grateful I was able to help Justin overcome future travel barriers though.

 

In Perth, in 2019, Justin was a keynote speaker at an International MND conference. I organised for the family to liaise with the dedicated staff at Qantas to ensure the airline would provide accessible and supported travel for Justin. And thankfully, the flight and conference were a success.

 

Unfortunately, as we all know, Justin’s story is not unique.

 

But it doesn’t have to be this way.

 

The government and Minister for the National Disability Insurance Scheme, Bill Shorten, have major plans to reinvigorate the NDIS and I am grateful to be able to share some of those plans with you today:

 

• Stop the unfair cuts to NDIS participants' plans with an expert review mechanism.

 

• Labor will identify and solve the problems with the design and operation of the scheme, ensuring solutions are evidence based and are co-designed with people with disability, their families and carers, and service providers and workers.

 

• We will make all proposed changes to the scheme transparent to rebuild trust between the NDIS and the people who rely on it for support.

 

• We will publish data so the scheme can be properly monitored, evaluated, and interrogated. We will identify gaps in the current evidence base and gather more information, data and research.

 

• We will increase the number of people with disability on the NDIA executive and board so that the voice and experience of participants is returned to the scheme.

 

• We will share governance with people with disability and their families and State and Territory Governments, and ensure the scheme is working with mainstream services.

 

• We will stop waste in the system by lifting the NDIA staffing cap, reducing service provider fraud, and spending on external lawyers and consultants.
  • Because the providers doing the right thing need fair competition.

 

• Appoint a senior officer within the NDIA to tackle the barriers to service delivery in remote areas of Australia and other areas.

 

• Pause the current changes to Supported Independent Living (SIL) that were being progressed by the Morrison Government without proper consultation.

 

• Investigate the $500 million Specialist Disability Accommodation (SDA) underspend to ensure people with disability can access appropriate housing.

 

• And we will investigate the NDIA Call Centre operation so participants and their families get the best possible service.

 

• The Federal Government will work with state and territory ministers as a priority to develop a strategy to improve safe and timely discharge of NDIS participants from hospital. It is unacceptable that there are people eligible for NDIS support, ready to leave hospital but are still in hospital beds for hundreds of days. That’s not fair on the health system and it’s not fair on the person with the disability.

 

In the Illawarra, NDIS services commenced just over five years ago on the 1 July 2017. As of 31 March 2022, the NDIS was supporting 9,197 participants living in the Illawarra and Shoalhaven region. Of that number, more than a third (3,196) are children aged 0 to 14.

 

By 2030 the number of people receiving NDIS support is expected to nearly double to around 17,000. This will place enormous pressures on the active disability providers in our region. Which, in the January to March Quarter, numbered 474.

 

Currently, there is a shortage of 83,000 workers in the sector, and almost one-third say they want to leave their job within the next 12 months.

 

To appropriately serve the growing number of clients, the government intends to attract more people to work in the disability sector, and to ensure they are properly qualified and renumerated to support participants and people living with a disability.

 

From 1 July 2022 price limits on NDIS supports delivered by disability support workers have increased by nine per cent - including a two per cent temporary loading for 2022-23. All current NDIS plan budgets will increase automatically to account for these changes.

 

As Minister Shorten has stated - “These improvements will better support participant outcomes and reduce workforce turnover by funding better conditions for NDIS workers”.

 

It was a Labor government that developed and introduced the NDIS and it will be a Labor government that fixes it. We will work in consultation with people with disability, their families and carers, and service providers and workers, to build trust and empathy, and to support better outcomes for people with disability.

 

We will listen and work with you all. As the member for Cunningham I am here to listen to your ideas and concerns, and to advocate on your behalf in the federal parliament.

 

I want to hear from you about how we can better help you to do what you do best - caring for some of the most vulnerable people in our society.

 

As your local Member for Cunningham, I will advocate strongly for access, equity, and inclusion working to ensure that people with disabilities can live their very best lives.

 

I thank you all for the work you do and I look forward to speaking with you as we continue to make our nation and our community an even better place. Thank you.