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13 April 2022

Remember the classic Aussie song I’ve Been Everywhere? The lyrics might jog your memory. “I’ve been everywhere, man I’ve been everywhere, man …. “I’ve been to Wollongong, Geelong, Kurrajong, Mullumbimby, Mittagong, Cooranbong, Grong Grong, Goondiwindi, Yarra Yarra, Bouindarra, Wallangarra, Turramurra, Boggabri, Gundagai, Narrabri, Tibooburra, Gulgong, Adelong, Billabong, Cabramatta, Parramatta, Wangaratta, Coolangatta.”

Sometimes it feels like that being a politician.

With inconvenient lockdowns and COVID, I’ve spent the past three years traversing Australia meeting people with disability, service providers and sector experts.

When we couldn’t travel, my team and I worked on Zoom and beamed into offices and living rooms wherever we could.

I wanted to know how the NDIS was working and what needed to be fixed. Not only have the scheme’s problems — and some of the solutions — become apparent, but so too have stories of great depth, sometimes sadness, humour, courage and inspiration.

From Coffs Harbour to Cairns, and Parramatta to Perth, it’s been an honour and a privilege to meet people with disability everywhere.

In the shadow of the upcoming election, I was in Reid in Sydney’s inner west last week and I want to tell you a story. Well, five actually.

We were invited along to Eurella, a 70-year-old community organisation for people with disability and their families. I was privileged to be able to meet several mothers of younger and older people with disability.

Five of the mums told me their children’s stories. They wanted to be heard and I had some time to listen.

Each of them was desperate for help from the NDIS. Each of them had been let down in some way.

What I heard was nothing short of heartbreaking.

Let’s start with 80-year-old Philomena, who is the carer for her profoundly disabled 57-year-old daughter, her own 104-year-old mother, as well as her own husband who has cancer and dementia.

Philomena told me she and her daughter have never been apart and they go everywhere together.

They are mother and daughter, not carer and patient.

When Philomena’s daughter was physically unable to walk up the stairs of the family home, Philomena requested home modifications from the NDIS. That was two years ago.

Instead of modifying the home the NDIS wanted Philomena to send her daughter into a home.

So, without any other reasonable choice, Philomena has been left to drag her daughter up and down the stairs each day (at 80, I reiterate).  She is tired and worn out.

I also met Margot, a high school teacher with a 27-year-old son, Max, who has Down syndrome. Margot is a lovely mum who was very frustrated. Frustrated by the overcharging, the lack of job options for her son and the totally inconsistent funding decisions.

For example, Margot told me that instead of the supports her son’s medical and allied health experts recommended, and Margot knew he needed, Max was given hours and hours of time with a government-paid occupational therapist walking someone else’s dog.

I’ll just leave that there with you.

Jane told me she had been waiting months and months for the NDIS to fix her profoundly disabled son’s wheelchair.

She also spoke of unqualified carers who were supposed to feed her son, but instead stood by and said it wasn’t their job.

Jane said she wanted empathy and more carers who knew what they were doing.

Chantelle, a mother of twins with severe autism, broke down in tears speaking about the lengths she is going to to keep her sons safe.

The stress of caring for her children alone, trying to find a home and appealing cut-price NDIS decisions had just got too much. Another woman, who was advocating for two daughters with mental illnesses, said she had asked repeatedly for help to simply care for her children.

She was worried about their future. All parents with children on the NDIS can relate, I’m certain.

People are tired and worn out. They want to be treated decently, not capriciously. They don’t want to beg.

The NDIS that is supposed to be there to help them has been negligently mismanaged for a decade by successive Coalition governments.

For a decade, people with disability have been subjected to fear campaigns, cuts and complete disrespect from the Coalition.

Their reign of negligence and deliberate cuts has had dire results, including a number of deaths.

The mismanagement has seen people with disability and their families living in fear that their funding to survive could be cut at any moment, leaving them or their loved one without essential care, equipment and accommodation.

Labor will release its NDIS policy in the coming week. Only an Albanese Labor Government will restore trust in the National Disability Insurance Scheme for people with disability.

This was first published in The West Australian on Wednesday, April 13.