The NDIS is on life-support. But my aunt Vicki is why this vital scheme needs to be saved

Our health editor Natasha Robinson was at the National Press Club in Canberra this week as Health Minister Mark Butler laid out his vision for NDIS reform. At home, her family was grappling with a broken system.

Natasha Robinson's grandfather, Dan Long, was the lifelong carer of his daughter, Vicki, who lives with severe disability. Picture: Supplied

This week, as federal Health Minister Mark Butler rose to speak at the National Press Club in Canberra to face the fire of the “burning platform” of National Disability Insurance Scheme sustain­ability, my aunt Vicki, who lives with severe disability, lay in hospital.

She’s bored and frustrated, as is the young man in her shared room; he has Down syndrome and is deaf, and never receives visitors. But life on the ward – which also houses a person with disability who has been in hospital for a whole year – provides snippets of joy. “I watched Home and Away last night,” Vicki told me with delight when we spoke after Butler’s speech. “It’s really beautiful here. The only thing I’m sad about is that Daddy’s not here.”

Vicki’s daddy was my grandfather, who died this year aged 104. My mother has been busy during the past week, grappling with the endless bureaucracy of managing her sister’s NDIS plan – a particular nightmare this month when Vicki, aged in her 60s, was admitted to hospital because she broke her wrist after a fall.

Vicki has severe cerebral palsy and intellectual disability and lives in supported disability accommodation after the death of my grandfather, her lifelong carer. While in hospital, NDIS support has been required because Vicki cannot feed herself. Organising this was very difficult. What support bucket does this fall under? Will anyone, such as Katrina A, answer the phone at the National Disability Insurance Agency?

The first question I had for my mum when she was relaying the struggle was: “Why can’t a nurse on the ward help Vicki to eat?”

I do understand that hospitals are overburdened and understaffed. Nurses are frequently run off their feet. However, the scramble to have an NDIS-funded disability worker attend hospital, paid by the hour, to help feed my aunt seems to me a classic example of the cost and responsibility-shifting that has accompanied the advent of the NDIS, which should be cherished by all of us alongside Medicare as Australia’s second great social welfare scheme.

Natasha Robinson's grandfather Dan with his daughter Vicki, who lives with profound disability. Picture: Supplied

Rather than a celebrated national treasure, the NDIS has become the answer to everything that’s too hard for mainstream services and now is widely viewed as a fiscal burden rather than a vital safety net. This cost and responsibility-shifting for disability care and support has taken place at a national scale across the past decade as state governments pulled critical but threadbare services, but also at a personal scale within families.

There is much national concern at the ballooning cost to the federal budget of the NDIS, and much of the blame simplistically falls on the large number of struggling families who have signed up to the scheme their children with autism or developmental delay.

But it seems to me, seeing up close for the whole of my life in my family the reality of the parental grind of caring for a child with disability, that there is one factor many Australians don’t appreciate about the spiralling cost of this vital national insurance scheme.

It’s this truth: the cost of care was previously well-hidden from policy designers – care hidden within state institutions and family homes. This is because it long has been largely parents who frequently have carried out the enormously intensive, grinding work of disability care, out of sight, their labour unquantified.

Health and NDIS Minister Mark Butler addressed the National Press Club in Canberra this week to lay out his vision for securing the future of the NDIS. Picture: Martin Ollman/NewsWire

They’ve done it out of love, of course, and fidelity, but also out of necessity. Now they have help and they’ve rightly accessed it, and by God don’t they and their children deserve it, and yes, it is extremely expensive. That’s not helped by a welfare scheme that has inflated the cost of everything.

On my grandfather Dan’s death this January, Mum and I pondered on how much he and his wife Annie must have saved the Australian taxpayer across the course of their lifetimes. Dan stayed at home until the age of 103, for about seven years after my nanna’s death. Vicki stayed at home with him, the pair rubbing along in their single-storey fibro shack in the southern Sydney suburbs with its sprawling backyard, Hills hoist in pride of place.

When I visited, we’d sit in the garden in the sun under a magnolia tree, and as the years went by and as Grandpa grew deaf, it was Vicki who acted as the conversation intermediary. Vicki’s slow, loud, deliberate way of relaying my words to Grandpa was easily heard and understood by him, despite Dan being unable to hear me at all. Vicki and Dan were symbiotic. It was Vicki who saved Grandpa’s life a few years back when he fell on a path in the garden taking the rubbish out. She wondered why he’d taken so long and called triple-0. His heart rate when paramedics arrived was less than 35 beats per minute, but he survived to live another day.

I’m convinced part of the reason for this may have come down to the driving imperative of his life, also felt so deeply by my nanna, who never wanted to let go of Vicki, who never wanted her consigned to a group home in the days when they were sometimes horrific, who backed her daughter in when a late-teenage Vicki picked up the phone and told the sheltered workshop she’d been signed up to, to labour for no income, to shove it and she wasn’t coming back. My nanna, who had lost an infant child to spina bifida, never wanted to lose another to indifference or poor care.

This is the heartbreak, the constant gripping fear of trusting services to care for your vulnerable child, or adult child, with disability. The fear of a lack of proper care, of exploitation, of abuse – when there is care at all. Fear tragically not unfounded. And this, combined with a dearth of services, is why so many parents, before the NDIS, shouldered the disability care burden alone and out of sight.

It’s true that the NDIS has strayed badly from its policy design and intentions. It’s true that eligibility has come to rely on medical diagnosis rather than functional capacity, and the net has been cast much too wide. But it’s also clear to me that it simply wasn’t obvious until now how much of the disability burden ageing parents were carrying.

Health Editor Natasha Robinson with her aunt, Vicki. Picture: supplied

Dan and Vicki are a case in point. For many years even as Grandpa aged, their care was relatively cheap for the taxpayer. Dan’s aged care package combined with Vicki’s NDIS package meant they could employ in-home carers, which allowed Vicki to live with her dad until he moved to a nursing home a year before his death. Since his death, her support package costs have risen by about $300,000 a year.

Despite all the talk about the extraordinary proportion of those with autism or developmental delay who are on the NDIS – about 40 per cent of the scheme’s participants – the reality is that their packages are small, averaging $16,000 each, and it’s the profound end of the disability spectrum that is so hugely costly.

And that is precisely why it’s so important for the federal government now to carefully steer the NDIS mothership. As a recent Grattan Institute report notes, design flaws and governance failures have been baked into the scheme from the start. More spending hasn’t translated to better results. Too lax regulation has seen the NDIS metastasise into a bureaucratic nightmare for participants.

Accessing the scheme, as Bruce Bonyhady documented in his 2022 review, is complicated and confusing. The bureaucracy is faceless, cannot be contacted and frequently fails even to know the nature of the participant’s disability as it demands expensive reports, denies crucial services and doles out unnecessary funding in other buckets.

A flourishing industry of middle managers creams off funds that should go to frontline care. Most care providers are unregistered. Fraud still abounds. Cuts to packages even for the most profoundly disabled have become cruel and arbitrary even as the numbers of those with milder disability being supported explode.

The beating heart of the NDIS is a dignified life for those who deserve it, as we all do. This is not in any sense just a story about a monumental threat to the national budget. It’s the devilish mission of what Butler described as returning the NDIS to its “north star”: an insurance scheme with a compassionate core that truly cares for people with lifelong disability, by delivering adequate and proper services but also by ensuring the responsible and sustainable fiscal underpinning of the entire scheme. That takes in not only the rational provision of support packages but also ensures the scheme functions as per its original intent to enable carers, and some of those with disability, to return to the workforce, and to enable a flourishing care economy.

If we get this policy machinery of the NDIS right, it is a scheme that delivers money back to the taxpayer rather than being a drain. The task ahead of Butler and NDIS Minister Jenny McAllister is monumental.

Butler’s National Press Club speech – his first major comments as the senior minister in charge of the scheme on the retirement of Bill Shorten and the change of government – pulled no punches.

Butler began by rooting the cause to his own background in Adelaide as secretary of the United Workers Union, where he would frequently tour the institutions that housed many of the profoundly disabled and severely mentally ill. The Labor stalwart saw first-hand and upfront in his early working life the sometimes hellish conditions in psychiatric institutions and disability homes such as Strathmont and Minda in South Australia, or institutions such as the one known as the “Home for the Incurables”.

It was the dire circumstances of some souls housed in such places that sparked the disability rights movement and eventually led to the birth of the NDIS. As Butler noted, the difference for those with severe disability today to the dire state of affairs 30 years ago is “beyond profound”.

That is precisely why restoring and rehabilitating the social licence of the NDIS is now Butler’s fervent task, along with rescuing the federal budget. As Grattan’s Sam Bennett has noted, the NDIS currently doesn’t operate like an insurance scheme with clear and enforceable eligibility criteria, consistent and data-led resource allocation and a sophisticated operational risk-management approach. Policy levers are insufficient to manage the mounting fiscal pressures on the scheme.

The enormous scale of the task is easily encapsulated in raw numbers. The scheme originally was anticipated to cater for about 410,000 participants. It now has about 740,000 enrolled. Its costs have been growing in recent years at more than 20 per cent a year and are almost equivalent to the defence budget. The NDIS is on track to cost taxpayers $105bn across the coming decade, increasing its share of GDP by 0.5 per cent – equivalent to the growth in Medicare, defence and aged care spending combined as a share of GDP. The government met its target last year of reining in growth in spending to 8 per cent but wants to slash that growth to between 5 and 6 per cent.

It plans to do so in large part by clamping down on eligibility to enter the scheme. Astoundingly, one in six boys in year 2 nationally receives support from the NDIS. This is in large part because, as Butler acknowledged, families caring for these children have nowhere else to go. The transitioning of these children into mainstream early intervention, health and social services will be a national project, but it’s far from clear that the states are keen to contribute to the extent they must. Foundational supports outside of the NDIS must be in place lest these children be cast adrift.

Since the NDIS’s inception, overwhelmed schools have encouraged parents to seek an autism diagnosis to attract extra funding to help deal with these kids. The patient numbers of private psychiatrists have exploded and parents have faced huge expenses to achieve diagnoses.

Many children have been placed on medication and will enter adulthood with potentially profound implications for their identity and self-perception. Exceptionalism has become almost the norm; costs underwritten by the taxpayer.

Politically, it’s an easy win in selling NDIS reform to focus on an eligibility crackdown for those with milder autism diagnoses. But it is not just those caring for children with profound disability who are worthy of state support. It’s also the parents of children with autism who can’t attend school, whose behaviour can be so enormously difficult to manage that parents’ ability to cope sits on a knife-edge daily. Butler points out these children are being over-serviced compared with anything else you’d see in the mainstream health system, receiving 70 therapy sessions on average a year without any rigorous assessment process for the funding.

In future these children will be able to access early intervention and mainstream care under a program to be dubbed Thriving Kids, with a new bulk-billed Medicare item devoted to early intervention. That the idea has not received universal condemnation, even from autism groups, speaks to its common sense.

But the task of saving the NDIS goes much further than eligibility. The widespread concern in the community at the sheer costs of this runaway scheme is exceeded only by the drumbeat of discontent in the disability community at what they see as an inhuman bureaucracy at the helm of the NDIS ship that often makes arbitrary and illogical decisions without accountability.

A more rational scheme hopefully will mean a more human one. I know it would have been one of the last wishes of my grandparents when they went to the grave that this scheme delivers the care for Vicki that they provided so lovingly in their lifetimes.

All people with disability deserve as much.

The Australian’s health editor, Natasha Robinson, was this week recognised at the National Press Club’s health journalism awards, where she was named the overall winner for the second year in a row.