A hint of dawn through a dark night for Hallowa Hospital

Before looking at how God can use our chaotic democracy to bring about a more just society, especially for children with disabilities, I must open up on a troubling family secret.

For some reason, my kids are a thousand times nicer than I’ve ever been. When I was a young teenager, I openly mocked people with disabilities with my friends. We thought that was pretty damn funny.

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

Later that day, we learned that my mother had a brother. He had been hidden 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.

She was the mother of all coincidences. For us children, this moment redirected our lives. In some ways, shame has never left us. Over time, moral suasion and love led us all to connect with our uncle Ricky, led by my sister.

One of our happiest times as a family was spending a weekend in the Hunter Valley with all of our young children, our mom and dad, aunt and cousins, and sharing it all with Ricky ; our children tucking him into bed with his toothless grin. Once we pretended he didn’t exist. Now he was the center of attention.

Ricky has also affected our professional lives. My sister is now a senior executive working in disability policy. My brother started his career as a psychologist working in an employment agency for people with disabilities. Me? I had a career in advertising and government relations, which left me with unresolved tensions. Partly out of guilt. Partly wanting people with disabilities to be honored in a way that we had failed to do.

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

Recently, I had my big break. Allowah Presbyterian Children’s Hospital contacted me. Just north of Parramatta, it’s the only hospital in New South Wales, and I think Australia, dedicated to caring for children with complex disabilities. Toddlers and preteens who live with an intellectual disability and are extremely vulnerable to health problems. In other words, kids like Ricky.

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

I think of my grandmother and grandfather, bringing Ricky home from the hospital after he was born, and slowly coming to the point of crisis – the realization that there was no way to meet his needs. A realization that ultimately led them to actually hand him over to the care of the state.

Allowah is here for that moment of crisis – but now he’s facing his own. A painful funding gap has developed. The federal government’s National Disability Insurance Scheme funds the disability supports that Allowah currently provides to approximately 120 children and some children have private medical coverage. But the reality is that none of these funding sources cover the cost of what it takes to care for these children who have complex medical needs and disabilities. Allowah provides other services, such as vacation programs, to help fill this gap, but when COVID hit the hospital had to close them and admissions were limited by the closures. The federal JobKeeper and state JobSaver and Social Services Sector Fund have provided much-needed support over the past two years, but it hasn’t been enough. They need $2 million this year to keep going.

We faced a diabolical problem…it’s a federal responsibility because we’re talking about children with disabilities [but] Allowah is a hospital providing medical care — it’s a state funding issue.

I have met private donors, who have been extremely generous. But we all knew that this kind of funding can only be supported by governments. This is where we faced a diabolical problem.

Starting with administrators of the state health system, the message was clear: This is a federal responsibility, because we are talking about children with disabilities.

Talking to senior federal government officials, the problem was abundantly clear. Allowah is a hospital providing medical care — it’s a state funding issue.

After months of letters, meetings and petitions, and several pressure sessions in which prominent Australians lobbied some helpful local MPs, some well-meaning junior ministers and some suspiciously dry senior ministers, we were still stuck. Hospital managers have started letting families know that there may be bad news ahead.

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

Democracy is, without a doubt, as Winston Church pointed out, the worst form of government except all the others that have been tried. A system where bargaining, emotional blackmail, networking, favours, abuse via social media and, at times, carefully reasoned arguments yield just results for the Australian people. Make no mistake, that’s how Julia Gillard convinced Tony Abbott to accept the NDIS in the first place.

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

For me, the breakthrough involved a bike ride in Canberra. I was stalking with a guy who I later learned was a backbench MP from Queensland. We talked a bit about family. And he mentioned that he has four daughters, one of whom lives with a disability. I told him about Allowah, which is not in his riding of course, and he said he would do what he could. So, not much to do.

The next thing I knew was that 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 the guys from Hallowa?

We had tried both sides of politics. For the hospital, it was the first sign of dawn on a very dark night. Honestly, I didn’t really care about contestant Maria’s exact motivations; she was someone who could put Allowah, and the children he cares for, on the political agenda, where decisions are actually made and actions force actions to happen.

This is the only way for me to explain what happened last Tuesday morning in Allowah. Although dozens of us wrote painstaking letters, hundreds of Presbyterians prayed, thousands of Christians petitioned – and seemed to get nowhere – I found myself presenting a number of children disabled to Senator Anne Ruston, who was then the federal Department of Families and Human Services Minister.

With the room full of these beautiful children, listening to a volunteer play the piano and sing the Sunday school choirs, I took the moment, like an idiot, to address the senator and talk politics. 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 got there, what was great was that the political class was now involved. These children were heard.

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

She was right. With these kids quietly humming and cooing, some of them dancing in a certain way with a nurse holding their hand, it was very hard to get excited about all this political stuff. At the time of the obligatory campaign photographs, I went to a corner of the playground and let out a little cry. It didn’t matter how we got there, what was great was that the political class was now involved. These children were heard.

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

A friend of mine, Nick, told me that ignorance is part of Australian history. That historically we always place people with disabilities in places where they cannot be seen or heard. There is a myth, which may be true, that people with disabilities could not travel on the king’s roads, so the places reserved for their care were always on the waterways. So Peat Island was for people with disabilities. And Callan Park, on the Sydney Harbor estuary, was reserved for the mentally ill. It makes me happy to think that Allowah is right in the middle of Sydney’s Great West. And maybe now, like King David bringing Mephibosheth to his table, we will have politicians, on both sides, vying to prove that they want to take care of everyone, including the disabled, to a place where they will be seen, honored – and properly funded.

Matt Busby Andrews is a communications consultant based in Canberra.

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