Kate, 17, was taken to hospital for surgery to improve her life. It has led to a months-long battle with the hospital and the NDIS for a dramatically increased support plan. By Rick Morton.
The fight for NDIS support
A major Queensland hospital threatened to report a family to child protection services in a bid to have them discharge their profoundly disabled daughter from a ward two months after spinal surgery.
Executives at Queensland Children’s Hospital told the family they would make the call implying that the parents were neglecting their daughter, Kate, by not taking her home from the facility, even though they were physically incapable of providing support, including oxygen treatment.
More than a thousand people across Australia are in a similar position, being left in state hospital systems because the National Disability Insurance Scheme (NDIS) has not created adequate support for them to be discharged. There are also at least a thousand people in hospitals because they cannot get timely access to aged-care beds.
Now, as Covid-19 and influenza sweep the country, placing more pressure on an exhausted and burnt-out healthcare workforce, national cabinet has agreed to “identify practical improvements to the health system” that will target short-term solutions like these.
The official communiqué from Anthony Albanese’s first national cabinet as prime minister, held on June 17, says: “This includes working together to identify practical ways to get aged care residents and NDIS participants out of hospital and into a more appropriate setting.”
In addition to extending a temporary 50:50 split in hospital funding until the end of December, at a cost to the Commonwealth of $760 million, a review of health system funding arrangements will also look specifically at “the connections between GPs and hospitals”.
For Kate’s father, Patrick, who asked that his surname not be used, the policy situation noted by Australia’s leaders is all too real.
“When we had the discussion with the executive, he said, ‘Well, the hospital is not the right place for Kate,’ ” Patrick says.
“And I said, ‘Look, let’s make it very clear: I understand that you don’t want Kate, and I agree with you that the hospital is not the best place for Kate, but it is not her fault that the state government removed all the other options that are available during this time.’
“Unfortunately, Kate is in hospital until she gets an appropriate plan. If the plan is not appropriate, she’ll have to stay there.”
Kate – who is 17 and has a variety of disabilities including the exceedingly rare IQSEC2 Gene Syndrome, epilepsy, dysphagia and severe anxiety – was being cared for by her parents at their home in Brisbane with daytime support from her limited NDIS plan.
She was admitted to Queensland Children’s Hospital on April 21 for spinal surgery, a procedure that was meant to improve Kate’s quality of life, which has led to a months-long fight with the hospital and the NDIS for a dramatically increased support plan.
“The inference I got from our meeting with the hospital was that we were capable of taking Kate home but were refusing to do so, so they were going to call Child Safety,” Patrick says.
“I said if you feel the need to do that, just give us a letter. Because that would put more pressure on the NDIS.”
On Tuesday, delegates from the National Disability Insurance Agency told the family that the requested plan review “is still in progress”.
For its part, Queensland Children’s Hospital says it wants Kate to be safe.
“We continue to work with the National Disability Insurance Agency and Kate’s family to ensure an appropriate supported independent living package can be arranged for her ongoing care needs at home,” a spokesperson told The Saturday Paper. “We’ll continue to care for Kate as an inpatient in the Queensland Children’s Hospital until this matter is resolved.”
It is difficult to say precisely how many people are stuck in hospitals when they could be supported elsewhere, although data suggests some 1000 beds could be freed up if waiting lists for aged-care placements were eliminated. This figure does not include nursing-home residents who are sometimes sent to emergency departments because homes do not have the resources to care for them or because moving them to a hospital is a form of cost-shifting.
Senate estimates hearings revealed that, as of November last year, there were 1140 NDIS participants medically ready for discharge from hospital who were unable to leave because plan approvals from the disability agency had not come through.
“If you look at the average [median] length of stay for NDIS participants, we’re talking almost four months,” a NSW hospital executive tells The Saturday Paper.
“This has been a problem for some time and it is true to say that the wait times are getting better, slowly. But we are facing unprecedented pressure on all our healthcare systems right now and there is simply no more flex left in the bodies of our staff or the capabilities of our institutions.”
On June 14, there were 2749 hospital ward beds occupied by patients with Covid-19 across Australia, with a further 99 intensive care unit or paediatric ICU beds similarly full. These numbers are lower than the 3520 ward beds filled in mid-January during the early stages of the Omicron surge, but they compound the sustained and critical pressure on hospitals and ambulance services during the past two years.
The Saturday Paper has obtained state-specific data for Victoria that shows on Monday last week there were 1328 public hospital staff unable to work because they were sick with Covid-19. This figure does not include other sick leave and days lost due to influenza, which is in its peak season in Australia.
In addition to these rolling gaps, 45 public health services in the state reported about 2150 full-time equivalent vacancies in April this year.
The causes of this are many but include the disruption of international recruitment pipelines, failure by university training places to keep pace with population needs, and rural and regional workforce shortages exacerbated by the pandemic.
Replicated nationally, there are some 15,000 gaps or vacancies in the healthcare workforce at any one time. The consequences are enormous.
“We probably have enough nurses in the country right now to deal with the demand we have, but they are just not prepared to,” a senior nursing figure tells The Saturday Paper, referring to qualified nurses who have left the sector or retired.
“This is especially true in the critical and acute care areas of hospitals. There are vacancies everywhere. The burnout is genuine.”
Nurses and doctors who have spoken on condition of anonymity told The Saturday Paper that staff-to-patient ratios have been abandoned in some hospital wards, even in high-dependency units, and care has been compromised by overwork and exhaustion.
“There really isn’t much room in the system for a crisis as it is, let alone one that goes on for more than two years,” a nurse says.
“What I’m finding is that important things are being missed. Whether it’s medication or care plans on handover, this is the stuff that really matters. We can’t keep going like this. Something has to give.”
Longer-term solutions to a workforce crisis involve relying more heavily on skilled, highly competent nurses who already do the lion’s share of caring in primary healthcare settings but who are subordinate clinically and systemically to doctors.
Other issues that have been highlighted are flaws in the funding arrangements for general practitioners. The Saturday Paper understands national cabinet was told last Friday by at least one state leader that Medicare billing rules do “not encourage the best standard of care”.
Part of this is due to GPs finding it difficult to recoup expenses on short consultations, leading to an increase in out-of-pocket expenses for patients over the past decade.
“If GPs never charge a co-payment, it’s hard for them to make a living. Additionally, some people can’t be appropriately treated in six minutes,” a source said.
Since 2009-10, for example, the average patient contribution for each out-of-hospital service under Medicare was $34.55. In the December quarter for last year, that cost had doubled to $69.
Although bulk-billing rates themselves have been increasing over the same period, the location of these services is not necessarily uniform. It is also not always possible to secure appointments on time with GPs whose books are already full or close to full.
“It’s not a good design feature, then, that people who are desperate for affordable healthcare have one final option to be seen quickly, and that is to turn up at the emergency department of a hospital,” an emergency department doctor tells The Saturday Paper.
“I don’t blame them but it does make our job much, much harder.”
In 2020-21, one-third of all presentations to public emergency departments in Victoria were by patients who could have been seen by GPs or other primary healthcare clinicians away from a hospital – if the help were available.
National cabinet has agreed to have the first secretaries of each state’s Department of Premier and Cabinet and the territories’ equivalents work together to identify the best locations for 50 Medicare urgent care clinics promised by the federal Labor government. The working group, led by the new secretary of the Department of the Prime Minister and Cabinet, Glyn Davis, will also be looking at other hospital and health reform.
Albanese said states and territories agreed that the establishment of Medicare urgent care clinics could be expedited and would take some pressure off hospital emergency departments. They also agreed that extra Commonwealth funding for hospitals was needed until the end of the year, because there were still thousands of people admitted with Covid-19.
For Patrick and his daughter, Kate, a properly funded NDIS support package would get her out of the hospital where her recovery has been compromised. It would also free up a vital hospital bed, as well as the two full-time assistant-in-nursing staff and security guards who are caring for Kate, among a panoply of other clinicians.
Patrick and his wife have been repeatedly told by management at Queensland Children’s Hospital that there are “no extra staff” for Kate’s care, despite her extremely high needs, because of Covid-19, the flu and recent bad weather in Queensland.
“I imagine it is costing them something like $50,000 a week just to keep her there,” Patrick says. “The hospital expects us to give up but the risk is, if we bring her home, we put her in danger. We do not have the funds and the human manpower to do that. And then you get to the NDIS and they expect us to give up, because that’s what a lot of people do. We won’t be giving up.”
This article was first published in the print edition of The Saturday Paper on June 25, 2022 as "Fight for care".
A free press is one you pay for. Now is the time to subscribe.