Before we examine how God can use our chaotic democracy to bring a more just society, especially for children with disabilities, I must reveal a disturbing family secret.
For some reason, my kids are a thousand times sweeter than I ever was. As a teenager, 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 played a mentally disabled boy, a character we called “Ricky.” Everyone laughed except Mom. A gentlewoman, she exploded with anger.
Later that day, we learned that my mother had a brother. And his name was Ricky. He had been kept from us and lived in a state institution on an island on the Hawkesbury River. He lived with an intellectual disability.
It was the mother of all coincidences. For us children, that moment changed our lives. In some ways, the shame has never left us. Over time, moral pressure and love brought us all in touch with our Uncle Ricky, driven by my sister.
One of our happiest times as a family was going away for a weekend in the Hunter Valley with all our young children, our mom and dad, our aunt, and cousins, sharing it all with Ricky; our kids put him to bed with his toothless smile. We used to pretend he didn’t exist. Now he was the center of attention.
Ricky also influenced our working lives. My sister is now a senior executive who works in disability policy. My brother started his career as a psychologist at an employment agency for people with disabilities. Me? I’ve had a career in advertising and government relations, leaving me with unresolved tensions—partly blame. I partly wanted to see people with disabilities honored in a way we haven’t.
If Allowah didn’t provide care one or two days a week… they don’t think their families would stay together.
Recently I got my big chance. The Allowah Presbyterian Children’s Hospital has contacted me. Just north of Parramatta, this is the only hospital in NSW and, I believe, Australia that is dedicated to caring for children with complex disabilities. Toddlers and tweens living with intellectual disabilities and extremely vulnerable to health problems. In other words, kids love Ricky.
As Eternity covered in Rebecca Abbott’s excellent article, what makes Allowah special is how they don’t just provide medical care and disability assistance to kids like Ricky – they help the families. If Allowah hadn’t provided care one or two days a week, helping them with NDIS forms and sharing skills on providing their child’s care, they don’t think their families would stay together. The mothers I spoke to in the hospital say the same thing.
I think of my grandmother and grandfather, who took Ricky home from the hospital after he was born and slowly came to the point of crisis—realizing there was no way they could meet his needs. A realization that eventually led them, in effect, to hand him over to the state’s care.
Allowah is there for that crisis – but now it stands for itself. A painful funding shortfall has emerged. The federal government’s National Disability Insurance Scheme funds the disability support Allowah provides to approximately 120 children, and some children have private health insurance. But the reality is that none of these funding sources will cover the cost of what it takes to care for these children with complex medical needs and disabilities. Allowah offers other services, such as vacation programs, to help fund this gap, but when COVID hit, the hospital had to close lockdowns, limiting them and admissions. The federal JobKeeper and the state’s JobSaver and Social Service Sector Fund have provided much-needed support over the past two years, but it wasn’t enough. They need $2 million this year to continue.
We faced a sinister problem… this is a federal responsibility because we are talking about children with disabilities [but] Allowah is a hospital that provides medical care – this is a state funding problem.
I have met several private donors who have been extremely generous. But we all know that governments could only support this kind of funding. It is here that we are faced with a sinister problem.
Starting with administrators in the state health system, the message was clear: This is a federal responsibility because we’re talking about children with disabilities.
When I spoke to senior federal officials, the problem was clear. Allowah is a hospital providing medical care- a state funding problem.
After months of letters, meetings, petitions, and several sessions of prominent Australians pressuring some helpful local MPs, some well-meaning secretaries of state, and some strangely curt senior ministers. Hospital managers began letting the families know that bad news might be coming.
At that moment, the most beautiful and bizarre solution emerged: democracy.
Democracy is, without a doubt, as Winston Church pointed out, the worst form of government, except for all the others that have been tried. A system in which haggling, emotional blackmail, networking, favors, social media abuse, and sometimes carefully reasoned arguments produce just results for the Australian people. Please make no mistake; it’s how Julia Gillard got Tony Abbott to agree to the NDIS in the first place.
At that moment, the most beautiful and bizarre solution emerged: democracy.
For me, the breakthrough was a bike ride in Canberra. I followed along with a man I later learned was a backbencher from Queensland. We talked a bit about family. And he said he had four daughters, one of whom lives with a disability. I told him about Allowah, which is not in his constituency, and he said he would do what he could. So not much to go on.
Before I knew it, the Liberal candidate for Parramatta’s federal seat called me. Maria Kovacic is one of those doers you meet who likes to solve problems. Could she meet Allowah’s boys?
This was the first hint of dawn for the hospital on a very dark night. We had tried both sides of politics. Frankly, I didn’t care what candidate Maria’s exact motives were; she was someone who could put Allowah and the children it cares for on the political agenda, where decisions are made and actions are enforced.
Only in this way can I explain what happened at Allowah last Tuesday morning. Although dozens of us had written careful letters, hundreds of Presbyterians prayed, thousands of Christians petitioned—and seemed to be getting nowhere—I found myself introducing some children with disabilities to Senator Anne Ruston, then Federal Secretary of State for Social Affairs.
With the room filled with these beautiful children, listening to a volunteer play the piano and sing Sunday school choirs, I took a moment, like an idiot, to address the senator and talk about policy. How there was a gap between what the states were responsible for and what the Commonwealth was responsible for.
It didn’t matter how we got here; the great thing was that the political class was now involved. These children were heard.
She gave me a firm answer: “Matt, isn’t it really important that these guys get the money?”
She had a point. With those kids quietly humming and cooing, some dancing in a way with a nurse holding their hand, all that political stuff was really hard to get excited about. When it was time for the obligatory campaign photos, I went to a corner of the playground and cried. It didn’t matter how we got here; the great thing was that the political class was now involved. These children were heard.
Now that the coalition has lost the government, Senator Ruston’s $2 million promise to Allowah (for which the families and the hospital are very grateful) could mean nothing if she goes to the opposition benches. But at least the needs of children with disabilities, who are beyond the reach of the NDIS alone, are now on the agenda of the most powerful people in the country—kids like Ricky, whom my family once ignored.
A friend, Nick, told me that ignoring is part of the Australian story. Historically, we always place people with disabilities where they cannot be seen or heard. There is a myth, which may be true, that people with disabilities cannot travel on the king’s roads, so the places reserved for their care have always been on waterways. So Peat Island was for people with disabilities. And Callan Park, at the mouth of Sydney Harbour, was for the mentally ill. It makes me happy to think that Allowah is in the middle of the greater west of Sydney. And perhaps now, as King David brings Mephibosheth to his table, we will have politicians from both sides vying to prove that they want to take care of all people, including those with disabilities, to a place where they are seen and honored. – and well-funded.
