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My name is Patrik Hutzel from intensivecareathome.com, where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies, where we provide tailor-made solutions for long-term ventilated adults and children on  Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure), ventilation without tracheostomy, tracheostomy care at home without ventilation, home cough assist management, home ventilation weaning. Home TPN (Total Parenteral Nutrition), Home IV potassium, home IV magnesium, home IV fluids and home IV antibiotic infusions, central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line and port management at home, as well as PEG (Percutaneous Endoscopic Gastrostomy), PEJ tube, nasogastric tube, nasojejunostomy tube, as well (IDC), suprapubic catheter (SPC) management at home as well as palliative care services at home.

So today, I want to keep talking about the story that made a lot of headlines in the last few weeks with Noah Johnston’s preventable death.

And today I need to talk about something that’s really keeping me up at night.

Noah Johnston’s death in December was preventable, full stop. And I’m going to explain exactly why the NDIS legislation actually mandates funding for 24/7 critical care registered nurses, CCRNs, when independent clinical evidence is present.

Noah was just 22 years old when he died because his ventilator tube came loose. His mom Kylie was in the middle of a legal battle fighting for 24/7 critical care registered nursing at home when this tragedy occurred, I should say when this preventable tragedy occurred.

If Noah had the 24/7 critical care registered nursing support that the independent clinical evidence clearly demonstrated he needed, he would still be alive today, it’s that simple.

There’s not a lot of margins for error when clients at home on a ventilator or with a tracheostomy. That’s why an intensive care nurse is needed to be there 24 hours a day, similar to an intensive care unit. These are split-second life or death situations that require immediate expert intervention.

But here’s what people don’t understand about NDIS funding for 24/7 registered nursing care. The legislation is actually on our side, let me break down what section 7.4B of the NDIS Act specifically states.

The NDIS is responsible for, and I quote: “Supports that enable the person to undertake activities of daily living, including maintenance supports delivered or supervised by clinically trained or qualified health practitioners, including allied health professionals, where these are directly related to a functional impairment and integrally linked to the care and support a person requires to live in the community.”

I’ll read that again.

The NDIS is responsible for, and again I quote: “Supports that enable the person to undertake activities of daily living, including maintenance supports delivered or supervised by clinically trained or qualified health practitioners, including allied health professionals, where these are directly related to a functional impairment and integrally linked to the care and support a person requires to live in the community”.

Clearly, when clinical evidence shows that 24-hour CCRN support is integrally linked to keeping someone alive in the community, the NDIS is legislatively mandated to fund it.

And the clinical evidence is crystal clear, when you look on our website at intensivecareathome.com, we have published the evidence-based Mechanical Home Ventilation Guidelines, which provide independent clinical evidence that outlines exactly what level of care ventilator dependent adults and children require at home. It’s not my opinion, it’s evidence-based best practice, supported by national and international research and clinical standards.

When you have independent clinical evidence demonstrating that the participant needs 24-hour critical care nursing to undertake activities of daily living and live safely in the community, section 7.4B creates a legal obligation for the NDIA to fund that support.

Now here is the real cost of cutting corners. We’ve now had 3 clients die within 18 months after their intensive care nursing was cut from their NDIS plans despite overwhelming and non-ambiguous independent clinical evidence. This actually includes Noah. In the other two cases besides Noah, support workers simply could not manage their complex care needs, they were taken to hospital and they died.

And we have warned the NDIS and the NDIS Quality and Safety Commission that this would happen. I have evidence, I’m happy to supply that evidence, and it was simply ignored.

And, you know, the NDIS was choosing to ignore this evidence and choose to let these clients die, and it’s not just about the human cost, though that should be enough in and of itself.

Let me give you the numbers here. An ICU bed costs $5,000 to $10,000 per bed day. Our 24-hour CCRN care at home is roughly half that cost. So, the NDIS and the taxpayer in general are actually costing taxpayers more money by refusing to fund what the legislation actually mandates.

I’ve got another patient who’s been stuck in a metropolitan ICU for 12 months now. The client could be discharged immediately if the client could access 24/7 critical care registered nurses at home, but the NDIA so far will only allow support workers.

Think about that, this patient can’t even go to a general ward in a hospital because regular and general RNs don’t have the intensive care nursing skills he needs, yet the NDIS wants to send the client home with support workers who have even less training.

It’s like flying an airplane with a cabin crew and not with a pilot. It would be, and it is a death sentence, as has been shown by recent deaths, avoidable, preventable deaths.

Just a couple of weeks ago, I had to make a decision to call an ambulance for a young client with a brain injury. And she also lost the right to have registered nurses care for her at home, that’s also NDIS related. When the last nursing shift finished, we had no choice but to admit her to hospital to keep the client safe because the funding went down. The client is safe now, but there’s no the quality of life in a hospital bed. This is someone who should be living in the community, in her own home, with family, with 24 hour CCRN support, that section 7.4B says she’s entitled to, once again, also for this client, like for any other client that I’ve just talked about, there’s independent, non-ambiguous evidence that supports that only 24 hour critical care registered nurses can keep the clients safe at home.

Once again, I’ve raised these concerns with the NDIA, the National Disability Insurance Agency, before these deaths occurred. I’ve reported it to the NDIS watchdog. People are falling through the cracks between the healthcare system and the NDIS. And the most vulnerable Australian citizens are paying with their lives because they’re on life support.

The NDIA keeps saying that where health needs are acute, support should be provided in a hospital or other healthcare settings, but that completely misses the point of what the NDIS legislation actually requires under section 7.4B. If someone can live in the community with appropriate supports and independent clinical evidence demonstrates what those supports need to be, then the NDIS has a legislative obligation to fund them.

In my opinion, the NDIS and state and territory health departments should split the cost of registered nursing at home 50-50. Overall, it would save taxpayers’ money and more importantly, it would save lives.

Noah Johnston would still be alive today if he had the 24/7 CCRN support that independent clinical evidence showed he needed. His death was preventable, and every day the NDIA continues to deny or cut 24-hour registered nursing care for ventilator and plus minus tracheostomy dependent participants, they are putting more lives at risk.

The legislation is clear. The clinical evidence is clear. What’s missing is the NDIS willingness to follow their own legislative mandate under section 7.4B when independent clinical evidence is present.

If you or someone you love is facing NDIS funding cuts to critical care nursing, you need to understand your rights under the legislation, the evidence-based guidelines exist, the legal framework exists, now we need the NDIA to actually follow them and keep the pressure on.

If you need help navigating NDIS funding for 24/7 critical care nursing at home, contact us at intensivecareathome.com. We employ hundreds of years of intensive care nursing experience combined in the community, where we bring our expertise into people’s homes 24 hours a day, and we understand exactly what the legislation requires.

Subscribe to my YouTube channel, if you like my videos, click the like button, click the notification bell and share the video with your friends and families.

Do not, let your loved one or yourself become another preventable tragedy, know your rights, demand the care that the legislation mandates, and go and speak up.

Don’t stop here.

So, with all of that said, with Intensive Care at Home, we are currently sending our critical care nurses into the home 24 hours a day. Therefore, we are providing a genuine alternative to a long-term stay in intensive care for ventilation, tracheostomy, home BIPAP (Bilevel Positive Airway Pressure), home CPAP (Continuous Positive Airway Pressure), ventilation without tracheostomy and tracheostomy care without ventilation, home TPN, home IV potassium, home IV magnesium, home IV antibiotic, and home IV fluids. We’re providing cough assist management at home, ventilation weaning management at home, central line, PICC line, Hickman’s line, as well as port management at home. We’re also providing nasogastric tube, nasojejunostomy tube, PEG, PEJ tube management at home, as well as IDC (indwelling urinary catheter) and SPC (suprapubic catheter) management at home as well as palliative care services at home.

We’re also sending our critical care nurses into the home for emergency department bypass services. We have done so successfully as part of the Western Sydney Local Area Health District, their in-touch program, saving approximately $2000 per patient that we keep at home instead of them going into an emergency department.

That also means we’re in a position to cut the cost of an ICU bed by around 50%. An intensive care bed costs between $5,000 to $10,000 per bed day depending on location.

Intensive Care at Home costs approximately 50% of that and we’re freeing up the most sought-after bed in the hospital, which is the ICU bed. Most importantly, we’re improving the quality of life for patients and their families, which is a win-win situation for all stakeholders.

With Intensive Care at Home, we’re currently operating all around Australia in all major capital cities as well as in all regional and rural areas. We are an NDIS approved service provider all around Australia, TAC (Transport Accident Commission) and WorkSafe in Victoria, as well as the Department of Veteran Affairs all around Australia, we’re also ISO 9001:2015 accredited.

Our clients and we as a service provider have also received funding through public hospitals, private health funds, as well as departments of health. We are the only service provider in Australia that has achieved third party accreditation for Intensive Care at Home nursing in 2025. We have been achieving this high level of accreditation since 2012. No other provider in Australia has achieved the Intensive Care at Home level of accreditation in the community and has created more intellectual property when it comes to Intensive Care at Home nursing than we have.

This puts us in a position to employ hundreds of years of critical care nursing experience combined in the community. No other service provider in 2025 employs a higher skill level in the community than we do, and that enables us to look after the highest acuity adults and children in the community in Australia safely.

If you’re at home already and you’re watching this or you’re stuck in an ICU and you realize that you don’t have the right level of support, I can give you many examples where we helped clients with funding, how we advocate for funding. We had to go from our first case study to advocate successfully for funding to many other case studies where we had to advocate successfully for funding with the right evidence, of course, because it is crystal clear that, disability support workers, for example, who are registered nurses without ICU experience cannot look after ventilated clients at home, whether adults or children with or without a tracheostomy, and it’s simply dangerous and negligent.

Plenty of examples where clients with support worker models or even RN models without ICU experience have died at home and have evidence to back up everything that I’m saying here because it’s a bit like flying the airplane with a cabin crew instead of the pilot, and it could simply be deadly, and this can be avoided by having, simply 24 hour, critical care nurses at home, because our clients are at high risk of medical emergencies or worse without critical care nurses 24 hours, and this is actually also evidence-based in the community and is documented in our evidence-based Mechanical Home Ventilation Guidelines on our website at intensivecareathome.com.

Think about it, in an intensive care unit in a hospital, you wouldn’t have support workers or general registered nurses looking after a critical care patient on a ventilator with a tracheostomy, so why would anyone in their right mind do that in a home care environment where there are fewer resources?

Clients that have found us have been at home long-term, predictably and permanently with critical care nurses. They are, alternative would have been to either die or stay in ICU long term and our clients don’t go back to ICU. They stay at home permanently and predictably, and the insurance bodies save half of the cost of an ICU bed it’s a win-win situation all around.

We can do the same for you if you’re stuck in ICU or if you’re not safe at home, which includes the advocacy for funding and the network that goes along with it. We have always successfully advocated for our clients or we have the network to successfully advocate for you and for your family member, otherwise we wouldn’t be in business. The same, again, is applicable for those stuck in an ICU which is similar to many of our, if not most of our cases.

This is also why we are providing NDIS Support Coordination. We have a team of experienced NDIS support coordinators, and they have a wealth of knowledge. We’re also providing TAC case management and WorkSafe case management in Victoria with Lucy McCotter. If you’re an NDIS support coordinator or a case manager or a social worker from another organization or a hospital watching this and you’re looking for nursing care for your participants, please reach out to us as well.

If you’re looking for funding for nursing care for your participants and you don’t know how to go about it and how to advocate for it, what evidence to provide, I encourage you to reach out to us as well, we have the network to make that happen.

We will help you with the right level of funding and with the right level of advocacy. We’re also providing NDIS specialist nursing assessments done by critical care nurses with a legal nurse consulting background.

If you are a critical care nurse and you’re looking for a career change, and you want to join a very progressive, dynamic, successful and high performing team of critical care nurses in the community, we are employing hundreds of years of critical care nursing experience combined.

If you’re looking for a career change, we’re currently hiring for jobs for critical care nurses in Melbourne, Sydney, Brisbane, in Albury, Wodonga, in Bendigo, in Geelong, in Warragul, and also in Wyelangta in Victoria.

If you have worked in critical care nursing for a minimum of 2 years, adult ICU, pediatric ICU, ED, and you have already completed a postgraduate critical care nursing qualification, we will be absolutely delighted hearing from you.

I have a disclaimer though, because we are offering a tailor-made solutions for our clients which includes regular staff. Our clients also do want the same staff coming over and over again because they are so vulnerable and so special, that’s why we need regular, reliable staff.

If you’re looking for agency, work where you can come and go, this will not be the right fit for you. We’re looking for consistency and our clients are looking for consistency, so please only apply with us if you can give us regular and consistent availabilities for shifts and you’re really keen on building relationships with us and with our clients. Reliability is also a must.

If you’re an intensive care specialist or an ED specialist, we also want to hear from you, we’re currently expanding our medical team as well. We can also help you eliminate your bed blocks in your ICU and in your ED for your long-term patients or for your regularly readmitting patients with our critical care nursing team at home.

We’re here to have to take the pressure off your ICU and ED beds, and in most cases, you won’t even pay for it, even if you do pay for it, it is so much more cost-effective than what you’re paying for in ICU and ED settings. You get the same level of care and simply more patient and family satisfaction because you also want to partner with your consumers.

If you are a hospital executive watching this, we can help you free up your ICU and ED (Emergency Department) beds.

If you’re in the U.S. or in the U.K. and you’re watching this and you need help, we want to hear from you as well. We can help you there privately with one-on-one consulting and with hiring nurses privately.

Once again, our website is intensivecareathome.com, call us on one of the numbers on the top of our website or simply send us an email to [email protected].

If you like my videos, click the like button, subscribe to my YouTube Channel for regular updates for families with Intensive Care at Home and intensive care, click the like button, click the notification bell, and share this video with anyone who has a family member in intensive care long term or needs to see this.

Thank you so much for watching.

This is Patrik Hutzel from intensivecareathome.com, and I’ll talk to you in a few days.

Take care for now.