A hint of dawn through a dark night for Allowah hospital

Capital Letters: Family shame, disability and politics

Before we look at how God may use our chaotic democracy to bring a more just society, especially for children with disabilities, I need to open up on a disturbing family secret.

For some reason, my kids are a thousand times sweeter than I ever was. When I was a young teen, I openly mocked people with disabilities with my friends. We thought it was damn funny.

One day, in the car with our mother, one of us role-played an intellectually disabled boy, a character we called “Ricky.” Everyone laughed. Except mum. A gentle woman, she exploded with rage.

Later that day, we learnt that my mother had a brother. He had been kept from us, living in a state-run facility on an island in the Hawkesbury River. He lived with an intellectual disability. And his name happened to be Ricky.

It was the mother of all coincidences. For us kids, that moment redirected our lives. In some ways, the shame never left us. Over time, moral pressure and love led us all to connect with our uncle Ricky, driven by my sister.

One of our happiest times as a whole family was taking a weekender in the Hunter Valley with all our young children, our mum and dad, our aunt and cousins, and sharing it all with Ricky; our children tucking him into bed with his toothless smile. Once we had pretended he didn’t exist. Now he was the centre of attention.

Ricky affected our working lives too. My sister is a director in the public service working in child protection, disability and mental health. My brother started his career as a psychologist working in an employment agency for people with disabilities. Me? I’ve had a career in advertising and government relations: leaving me with unresolved tension. Partly guilt. Partly wanting to see that people with disabilities are honoured in a way that we had failed to.

If it wasn’t for Allowah providing care one or two days a week … they don’t think their families would hold together.

Recently, I got my big chance. Allowah Presbyterian Children’s Hospital contacted me. Just north of Parramatta, they’re the only hospital in NSW and, I think, Australia, dedicated to caring for children with complex disabilities. Toddlers and tweens who live with intellectual disabilities and are extremely vulnerable to health problems. In other words, children like Ricky.

As Eternity covered in Rebecca Abbott’s excellent article, what makes Allowah special is the way they don’t just provide medical care and disability supports for kids like Ricky — they help the families. The mothers I’ve spoken to at the hospital say the same thing. If it wasn’t for Allowah providing care one or two days a week, helping them with NDIS forms, sharing skills on how to provide the care their child needs — they don’t think their families would hold together.

I think of my grandmother and grandfather, taking Ricky home from hospital after he was born, and slowly coming to the point of crisis — the realisation that there was no way they could meet his needs. A realisation that, eventually, led them to effectively relinquish him to the care of the state.

Allowah is there for that moment of crisis — but now it’s facing its own. A painful funding gap has opened up. The federal government’s National Disability Insurance Scheme funds the disability supports Allowah provides to around 120 children at present and some children have private health cover. But the reality is that neither of these sources of funding covers the cost of what it takes to care for these children who have complex medical needs and disabilities. Allowah provides other services, such as holiday programs, to help fund this gap, but when COVID hit, the hospital had to close them down and admissions were restricted by lockdowns. The federal JobKeeper and state JobSaver and Social Service Sector Fund provided much-needed support over the past two years but it has not been enough. They need $2 million this year to keep going.

We faced a devil’s problem …  this is a federal responsibility because we’re talking about kids with disabilities [but] Allowah is a hospital which provides medical care — this is a state funding problem.

I met with some private donors, who have been extremely generous. But we all knew that this kind of funding can only be sustained by governments. It’s here we faced a devil’s problem.

Starting with administrators in the state health system, the message was clear — this is a federal responsibility because we’re talking about kids with disabilities.

Talking to senior staffers in the federal government, the problem was perfectly obvious. Allowah is a hospital which provides medical care — this is a state funding problem.

After months of letters, meetings and petitions, and several arm-twisting sessions where prominent Australians put pressure on some helpful local MPs, some well-meaning junior ministers and some strangely curt senior ministers, we were still stuck. Hospital managers began letting the families know there could be bad news ahead.

It was at that moment that the most beautiful and bizarre solution emerged: democracy.

Democracy is, without question, as Winston Church pointed out, the worst form of government, except for all the others that have been tried. A system where haggling, emotional blackmail, networks, favours, abuse via social media and, occasionally, carefully reasoned arguments give just outcomes to the people of Australia. Make no mistake, it’s how Julia Gillard got Tony Abbott to agree to the NDIS in the first place.

It was at that moment that the most beautiful and bizarre solution emerged: democracy.

For me, the breakthrough involved a bike ride in Canberra.  I was tracking along with a guy I later learnt was a backbencher from Queensland. We talked a bit about family. And he mentioned he had four daughters, one of whom lives with a disability. I told him about Allowah, which isn’t in his constituency of course, and he said he’d do what he could. So, not a lot to go on.

The next thing I knew, the Liberal candidate for the federal seat of Parramatta was calling me. Maria Kovacic is one of those doers you meet, who likes to solve problems. Could she meet with the guys from Allowah?

We’d tried both sides of politics. For the hospital, this was the first hint of dawn through a very dark night. I honestly didn’t care exactly what the exact motivations of Candidate Maria were; she was someone who could put Allowah, and the children it cares for, on the political agenda, where decisions actually get made and force actions to happen.

This is the only way I can explain what happened last Tuesday morning at Allowah. Though dozens of us had been writing careful letters, hundreds of Presbyterians have been praying, thousands of Christians petitioning – and seemed to get nowhere – I found myself introducing a number of children with disabilities to Senator Anne Ruston, who was then the federal Families and Social Services Minister.

With the room full of these beautiful children, listening to a volunteer playing piano and singing Sunday School choruses, I took the moment, like an idiot, to address the Senator and talk policy. How there was a gap between what the states are responsible for and what the Commonwealth is responsible for.

It didn’t matter how we’d got here, the great thing was the political class was now involved. These children were being heard.

She gave me a firm reply, “Matt, isn’t what really matters is that these guys get the money?”

She had a point. With those children quietly humming and cooing, some of them dancing in a way with a nurse holding their hand, all that policy stuff was very hard to get excited about. When it was time for the obligatory campaign photographs, I took myself to a corner of the playground and had a little cry. It didn’t matter how we’d got here, the great thing was the political class was now involved. These children were being heard.

Of course, now that the Coalition has lost government, Senator Ruston’s promise of $2 million for Allowah (for which the families and the hospital are very grateful) may mean nothing as she moves to the opposition benches. But at least the needs of children with disabilities, which are beyond the scope of the NDIS alone, are now on the agenda of the nation’s most powerful people. Children like Ricky, who my family had once ignored.

A friend of mine, Nick, told me that ignoring is part of the Australian story. That, historically, we’d always put people with disabilities in places they can’t be seen or heard. There’s a myth, that may be true, that people with disabilities couldn’t travel on the King’s roads, so the places set aside for their care have always been on waterways. So Peat Island was for people with disabilities. And Callan Park, on the estuary of Sydney Harbour, was for the mentally ill. It makes me happy to think that Allowah is right in the middle of the greater west of Sydney. And maybe now, like King David bringing Mephibosheth to his table, we’ll have politicians, from both sides, vying to prove they want to care for all people, including people with disabilities, to a place where they are seen, honoured – and properly funded.

Matt Busby Andrews is a communications consultant based in Canberra.