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3-Year-Old Koa’s NDIS (National Disability Insurance Scheme) Funding Has Been Cut, Is She Going to Die? How Can INTENSIVE CARE AT HOME Help?
Hi, it’s Patrik Hutzel from intensivecareathome.com where we provide tailor-made solutions for long-term, ventilated adults and children with tracheostomies and where we also provide tailor-made solutions for hospitals and intensive care units whilst providing quality services for long-term ventilated adults and children with tracheostomies, also otherwise medically complex adults and children at home including Home BIPAP (bilevel positive airway pressure), Home CPAP (continuous positive airway pressure), also home tracheostomy care when adults and children are not ventilated. We also provide Home TPN (total parenteral nutrition) which is home intravenous nutrition. We provide IV potassium, IV magnesium infusions at home, as well as IV antibiotic infusions at home. We also provide port management, central line management, PICC (peripherally Inserted Central Catheter) line management, Hickman’s line management, as well as palliative care services at home and that also includes ventilation weaning at home.
We also send our critical care nurses into the home for emergency bypass services which we’ve done for the Western Sydney Local Area Health District in touch program as part of a successful tender in the past where we avoid ED or emergency department presentations.
Now, today I want to comment about a case of the NDIS (National Disability Insurance Scheme) where there were recent funding cuts and I just want to play a media report. While some of it might be really distressing, but it just illustrates what’s going on at the moment, and I think people need to know about it and they also need to know that we are a solution for this here at Intensive Care at Home.
Let’s just play the media report of a little girl who had their nursing funding cut from the NDIS. So, let’s just play this from Ben Fordham from 2GB Radio:
“The crunch is coming for the National Disability Insurance Scheme. After letting the cost of the NDIS explode, they’re now trying to contain the extent of the damage. Families are receiving phone calls and they’re having their funding cut, and here’s why.
In recent years we’ve allowed people to charge all sorts of weird and wacky stuff onto the NDIS, from brothel visits to luxury cruises. And now we can’t afford the vital care that people really need.
Alicia writes, ‘The NDIS couldn’t even afford my family, the decency to speak to me. Instead, they emailed my support coordinator at 4:59 p.m. Her three-year-old daughter, Koa, has an incurable brain disorder and the NDIS has just decided to swing the ax on her support.
Now, what I’m about to play you is distressing, but this is how Koa’s sister, Ava, reacted when she heard what was happening to Koa.
‘She doesn’t live without all this help,’ she said.
‘Will Koa even survive without all this help?’ That’s her sister.
According to Koa’s mum, the NDIS has now taken away nursing supports, a wheelchair accessible vehicle, music therapy, and hydrotherapy. Alicia writes, ‘The biggest cut is to nursing support. They’ve done this to my little girl who experienced more than 120 seizures in one month and who relies on oxygen for life support to stay alive. Her sister is worried that all of these things are being taken away.
‘The people are taking these.’
‘Mommy’s going to fight really, really hard to make sure that it doesn’t happen.’
I know it’s heartbreaking to listen to, but this is what families are facing right now, and if you’ve found yourself in this boat in the last week or so, we want to hear from you.
The government allowed the NDIS to grow out of control and be exploited by people who don’t need it. And now, kids like Koa are paying the price. Alicia says, ‘She’ll die. She’ll die from this neglect. You have failed a sweet innocent girl, but you won’t hear the last of me. I will fight to the death, and this is what we warned about. They let too many pirates onto the ship and now good people are being ordered to walk the plank. We mentioned Nicholas a few weeks ago, his twin sons, William and Lee, are on the NDIS both severely disabled, receiving the same care but their packages have been reassessed out of the blue and Lee’s funding has been cut by one third.’
Now, brace yourself. There’s going to be a lot more of this happening. Children are having their plans automatically reviewed sometimes over the phone and their parents don’t even have the opportunity to produce reports to oppose any decision.
Mel says, ‘Many participants are having their plans reduced by up to 30%.’
Harry says, ‘Parents really need to get communication in writing with regards to plan rollovers and budgets.’
Here’s what’s happened, the NDIS is one of the fastest growing areas of spending. The Minister Bill Shorten took way too long to do something about it and now we have good people paying the price because too many bad people were allowed to take advantage. We’ll give the final word to a dad called Dean who has a disabled son who requires four therapists.
Dean says, ‘We’re now getting punished for everyone else rorting the system.’”
So obviously, that is absolutely heartbreaking, what’s happening here with little Koa and her family. And whilst I cannot talk about people rorting the system, I can’t talk about that because that’s certainly not our clientele here at Intensive Care at Home. They need intensive care nurses sometimes funded by the NDIS, sometimes funded by other funding bodies.
So, my discussion today is certainly not about people rorting the system because certainly not in our world. I can’t really comment about what’s happening with other participants with disabilities, what I can comment about is that our clients would be in intensive care if it wasn’t for our service. And to say that the NDIS cost is blowing out, I strongly disagree there because if it wasn’t for our service cutting, the cost of an ICU bed by 50%, it would be even more expensive. It’s just taxpayers’ money anyway. If people go to hospitals, then the state government is paying. The NDIS is obviously federal government funding. But at the end of the day, it’s all taxpayers’ money.
So, the notion that the NDIS cost is blowing out, I strongly disagree with because we are saving the healthcare system millions of dollars every year by sending patients home instead of them living in intensive care taking up a $5000 per bed day intensive care bed. This is obviously what’s happening here with Koa. If she doesn’t get the help she’s needing, she’ll probably end up in hospital and her care will be even more expensive because then she has to be kept alive in intensive care or in a hospital which is way more expensive than providing home care.
It just doesn’t make sense. And whether it’s Bill Shorten from the NDIS, whether it’s state government health officials, it doesn’t really matter. Get on a table, get together and work out what’s best for families and for their sick children or for their sick family member. Work that out. Don’t make it about us versus them. Just use common sense because it is common sense to cut the cost of an intensive care bed by 50% when possible. It doesn’t make sense to cut funding altogether for nursing.
With Koa, she’s having 120 seizures every month, that’s about four seizures every day. So, with seizures, especially Grand Mal or tonic-clonic seizures, airways can become compromised and that is not something that can be managed with a support worker. For example, with a disability support worker, if airways become unstable, if medications such as benzodiazepines or other anti-seizure medications need to be given, or opiates need to be given, that is the skill of a registered nurse. Often when airways are compromised, it is the skill of an intensive care nurse, not the skill of a support worker. Sometimes, the NDIS wants people make-believe.
It is absolutely heartbreaking what’s happening with Koa, and I can also encourage Koa’s family to reach out to us here at intensivecareathome.com because I believe we can help Koa because we also provide Level 2 and Level 3 NDIS Support Coordination.
Again, I don’t know Koa’s case inside out but what we have learned over the years is often that some NDIS Support Coordinators are not providing or gathering the evidence that is needed for the NDIS. Again, I can’t comment on Koa, but we have a lot of experience with providing the evidence for nursing care funding for the NDIS including intensive care nursing. Our NDIS Support Coordinator, Amanda, knows all about that. So, I can only encourage you to reach out to us here at intensivecareathome.com. We also have our own NDIS Support Coordinator.
And what we’ve done from Day 1, we’ve been in business now since 2013. All we did from Day 1 is advocate for our clients to help them get the funding they need. But once again, keep in mind, this is a win-win situation. If our clients were in intensive care, taking up an intensive care bed that is in high demand, it would cost the taxpayer $5000 to $6000 per bed day. Whereas with Intensive Care at Home, it’s about 50% of the cost and we’re freeing up an ICU bed. So, it’s a win-win situation all around.
So, with all of that said, with the Intensive Care at Home, we currently operate all around Australia and all major capital cities as well as in regional and rural areas. We are a NDIS accredited service provider. We are also a TAC (Transport Accident Commission) and WorkSafe approved service provider in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme) in Queensland, DVA (Department of Veteran Affairs) all around the country. We have received funding through public hospitals, private health funds as well as departments of health.
We also provide Level 2 and Level 3 NDIS Support Coordination which is what little Koa needs urgently. She needs a really good NDIS Level 3 Support Coordinator who knows what they’re doing. We also provide specialist NDIS nursing assessments. We have our legal nurse consultant team that can provide those NDIS specialist assessments.
Like I said, we also send our nurses into people’s home to avoid ED admissions and if you are a NDIS Support Coordinator and you need help with advocacy because again, most NDIS Support Coordinators are not clinical, they don’t really know what to advocate for because they haven’t worked in intensive care. They don’t really understand what level of skill needs to be brought into people’s home to keep them out of hospital predictably and keep them alive predictably because this is what’s probably happening here to little Koa. If she doesn’t get the nurses, she will either die or she will go into hospital.
I hope Bill Shorten sleeps well at night or anybody else who is involved in the lack of funding. I hope those people sleep well at night, and that’s all I can say here.
Now, you’re watching this, and you might be at home already and you might realize that you don’t have enough support at home, then once again, I encourage you to reach out to us as well. We have helped so many families with Intensive Care at Home to turn the funding around, making sure they get the intensive care nurse. You might be at home already and you might realize, “Hey, whatever I’ve got here is not working. The NDIS is trying to give me support workers for intensive care nursing work.” That’s definitely not going to work because that’s like flying the airplane with the cabin crew instead of the pilot. So, it’s very important that you get the right level of support before it’s too late. People have died because of it. When the NDIS is not coming to the party with the right level of funding, people have died because of it, and we have all the evidence to back up what I’m saying here.
If you are a critical care nurse looking for a career change, we want to hear from you as well. If you have worked in critical care for a minimum of two years in ICU, pediatric ICU, or ED, ideally with a postgraduate critical care qualification, we absolutely want to hear from you. We currently have jobs in Melbourne, Sydney, Brisbane, but also in Bendigo in Country Victoria, as well as in Warragul in Country Victoria. We want to hear from you. We also have jobs in Albury, Wodonga on the Victoria, New South Wales Border, and we absolutely want to hear from you.
Please keep in mind we provide a tailor-made solution to our clients, which means we don’t want nurses coming and going. We are looking for nurses who want to build relationships with our clients. We’re looking for nurses that we can build a relationship with, that want to work in the community. We are not a nursing agency where people come and go. We want regular staff, and our clients want regular staff. So please keep that in mind.
If you are an intensive care specialist, we are also currently expanding our medical team. So, if you’re an ICU consultant, please reach out to us.
If you’re an intensive care specialist, ICU consultant working in ICU, and you have bed blocks of long-term patients in ICU, adults, children, long-term ventilation, tracheostomy, palliative care, we want to hear from you as well. We can help you eliminate your bed blocks, and you don’t even pay for it.
If you’re a hospital executive watching this, we also want to hear from you. We can help you eliminate your bed blocks in ICU, in hospitals, and in the emergency department. You can reach out to us as well.
The best way to reach out to us is on our website at intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].
If you are in the U.S. or in the U.K. and you need help, please reach out to us as well. We can help you there privately.
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Thank you so much for watching.
This is Patrik Hutzel from intensivecareathome.com and I will talk to you in a few days.
Take care for now.