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Devastating hardly covers the effect that a diagnosis of Parkinson’s disease had on my dear twin sister when she was in her late 40s. A retired nurse, Louise knew it was incurable and progressive, and symptom management is fraught with complications.
Every small task for her is frustratingly difficult or impossible now – moving, eating, washing, dressing, reading. Her life is marked by sequential losses. But the one thing that has made her life bearable, so far, has been the assistance and companionship she receives from carers funded through the National Disability Insurance Scheme.
This has enabled me to keep working as a GP, seeing mainly vulnerable people and those with chronic and complex needs; it also means my sister has been able to continue living with us.
Our NDIS journey began with an email search for an application form – no such luck, so I phoned the National Disability Insurance Agency, the authority that manages the scheme.
“Oh, no, you can’t access the form online,” I was told. “We need to ask you specific questions.”
“OK,” I said, “what do you need to know?”
“Your address.”
I presume such tactics are used to test desperate applicants and advocates. The form arrived about 10 days after it was posted and we had four weeks from the posting date to complete the paperwork, including reports from a GP and a specialist, for whom it normally took months to get an appointment. So I called in lots of favours.
Then it was off to a lengthy session with an NDIA representative, who devised a cunning list of needs and lofty goals, about work and independence, which my sister had lost due to Parkinson’s, hence the need for support. We were then directed to the local NDIS office, which was located somewhere in an ageing office tower with no directory and no one about. When we finally found it, behind a wooden door emitting B-grade private-eye vibes, I was told, “Sorry, we close at 4.” My foot already in the door, I surged forward. “That’s OK, it’s 10 to, and we won’t take long.”
We decided to self-manage the NDIS package my sister was awarded. That’s extra work for me, not least because of the jargonistic language you must negotiate to ensure you claim for the right artificial category. The idea was to use the money to support her, rather than watch it evaporate in management fees and unnecessary care.
We were deluded. The carers are wonderful but they only receive about 55 per cent of the fee paid by my sister (and reimbursed by the NDIS); the rest goes to the private company that supplies the workers. In one month, for instance, we were billed $8442 for 86 hours of care. Of this, about $3800 went to the company. That’s NDIS money – taxpayers’ money. It’s not good value for my sister or for the taxpayer.
The company does minimal work to get this money. It does the rostering. It sends out some flashy online newsletters about what a great job it’s doing. It writes up irrelevant care plans in the first person on behalf of the client.
The carers, most of whom are women and hired as casuals, are provided no equipment and minimal support, and some have been hauled into the office for telling-off. My sister has recently lost a carer who left after feeling bullied, and one of her hardest-working carers has found work elsewhere after being denied multiple shifts. The company has thousands of clients and has aggressively acquired competitors; it’s now part-owned by a private equity investment group. It is promoted on the My Aged Care website.
By comparison, I work at a non-corporate medical centre. I take home 70 per cent of my billings (and since I mainly bulk-bill, the centre is hardly raking it in). For the 30 per cent it takes, the practice provides everything – the consultation room, medical equipment, reception and nursing support. It has huge running costs – IT, accreditation, vaccine fridges, power bills and more. And it treats me very well.
Private care providers are not the only ones taking advantage of carers and the aged or disabled people they care for. A non-slip silicone mat for my sister’s food tray would have cost more than $100 at a disability equipment store; we bought one for under $5 at a supermarket.
We need the NDIS but, for all the talk of weeding out fraudsters and fakes to rein in costs, the way it is managed by the government enables profiteering. Like the aged care and childcare sectors, the disability sector, under the NDIS public-private equation, has become a licence for printing money for large outfits. People with disabilities should be the core concern of the scheme but the conversation from Canberra frames people with disabilities, and a few shysters, as the cause of cost blowouts.
In economic terms, Australia is still a lucky country, albeit with a very unequal distribution of wealth. With the right systems in place, we have the capacity to provide quality public childcare, aged care and disability services. We are paying for these now but the funding is part of the business model of private interests. This is where the government needs to look for cuts, by setting maximum profit margins and ensuring the money gets to where it’s needed, rather than lining the pockets of the aspirational.
Dr Marie Healy is a general practitioner in Redfern, Sydney.
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