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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),non-invasive ventilation, tracheostomy care at home without ventilation, home cough assist management, home ventilation, weaning management, Home TPN (Total Parenteral Nutrition), home IV potassium, home IV magnesium, home IV antibiotics, home IV fluid management, PICC line, central line, Hickman’s line, port management at home, PEG (Percutaneous Endoscopic Gastrostomy), PEJ tube, nasogastric tube, nasojejunostomy tube, management at home, indwelling catheter (IDC), suprapubic catheter (SPC) management at home as well as palliative care services at home.

In one of my videos last week, I talked about why Noah Johnson would still be alive with 24/7 CCRN (Critical Care Registered Nurse) support.

I’ll put a link to that article and video. I encourage you to have a look at it and check it out.

In today’s video, I actually want to follow up from that video because it’s made quite a few headlines in the Daily Telegraph. We had clients reach out to us asking whether we knew Noah, whether we knew about his story. Like I highlighted in my previous video about Noah, Noah was actually one of our clients. We were doing day shifts there but not night shifts because there was no funding. And the case was actually at the AAT (Administrative Appeals Tribunal), at the tribunal court, and while Noah was waiting for approval of 24-hour nursing, 24-hour ICU nursing because he was ventilated with a tracheostomy, he passed away, even though the NDIA (National Disability Insurance Agency) knew about the risk because there were independent nursing assessments, independent medical assessments, and the NDIS (National Disability Insurance Scheme) kept ignoring it, was dragging it to court instead. And while Noah was waiting for life-saving funding for CCRNs, he died instead

Now, today I want to honor Noah Johnston again in this video. His mom Kylie left a comment on my YouTube channel after I published the video, and I want to read out a comment. It’s quite insightful. Kylie says,

“Noah’s life was worth far more money than the world could ever print. Thank you for honoring Noah. Everyone who had the privilege of getting to know Noah recognized how beautiful he was and how loved and valued he was and always will be. I miss Noah every second of every day. Noah was full of love and smiles. Noah was not only my son but also my best friend.”

Those are the heartbreaking words from Noah Johnson’s mom left as a comment on my YouTube channel and every time I read them, I feel a mix of profound sadness and absolute fury. I have met Noah and Kylie and I’ve known Kylie for many years, but I’ve also met Noah and our nurses that have worked with Noah also are devastated by this news, because here’s the truth. Noah would still be alive today if he had proper 24-hour critical care registered nurse support at home, which is, by the way, evidence-based as per the evidence-based and best practice Mechanical Home Ventilation Guidelines that we have published on our website.

And today I want to talk about again something that should have never happened, the preventable death of Noah Johnson. More importantly, I want to explain why the NDIS legislation actually mandates that they fund 24-hour CCRN support when independent clinical evidence is present. When you’re talking about someone like Noah, a young man who was ventilator dependent with a tracheostomy and medically complex secondary to his NDIS funded disability, you’re not talking about basic care needs, you’re talking about life sustaining medical interventions that require expert critical care nursing knowledge, 24 hours a day, 7 days a week, and here’s what many people don’t understand, including some people within the intensive care hospital community. Ventilator-dependent patients can deteriorate in minutes, including at home, seconds matter. You need someone who understands ventilator and tracheostomies, ventilator settings in particular and can troubleshoot immediately, can recognize subtle changes in respiratory status before they become life threatening, knows how to manage airways, suction appropriately and respond to emergencies, can interpret clinical signs and intervene without waiting for an ambulance.

That’s not a general registered nurse, it’s definitely not a support worker. It’s a critical care registered nurse, an ICU nurse and according to the evidence-based and best practice Mechanical Home Ventilation Guidelines  that we have published on our website at intensivecareathome.com  it’s exactly what’s recommended for complex ventilator dependent patients at home with or without a tracheostomy.

Also, let’s look at what the NDIS legislation actually says. And that’s where it gets really interesting and where the NDIS has failed Noah and many other families. The NDIS Act in 2013, from 2013 clearly states that supports must be reasonable and necessary, based on evidence, designed to meet the participant’s needs and goals. When you have independent clinical evidence, which we have seen for Noah especially, there was a doctor’s report confirming that Noah needed 24-hour critical care nurses.

Again, that’s an independent report which confirms what our evidence-based Mechanical Home Ventilation Guidelines  clearly outline on our website, the NDIS is legislatively mandated to fund appropriate supports.

Let me break this down.

Reasonable and necessary support. Well, it’s certainly not reasonable that Noah died. That’s very unreasonable. Section 34.1 of the NDIS Act requires that funded supports be reasonable and necessary for a ventilator dependent child like Noah. 24/7 CCRN support is not a luxury, it is life sustaining. The guidelines I’ve referenced make it very crystal clear that patients with complex ventilation and tracheostomy needs require critical care level nursing. That is the evidence. That is what is reasonable. That is what is necessary.

The NDIS is supposed to make decisions based on best available evidence, once again, the Mechanical Home Ventilation Guidelines, which are evidence-based, provide exactly that evidence-based recommendations for safe home ventilation and for safe Intensive Care at Home.

Once again, I put the link towards the evidence-based Mechanical Home Ventilation Guidelines that clearly document that there must be a critical care trained nurse on site 24 hours a day in a home care environment for clients like Noah.

When independent clinical assessments show that 24/7 critical care nurses are required, the NDIS can’t just ignore it because of the cost. Legislation doesn’t work that way. But let’s talk about cost.

For a childlike Noah who otherwise would be in intensive care, the cost is $5,000 to $10,000 per bed day, depending on location, depending on condition and diagnosis. Intensive Care at Home and NDIS funding in this case would be about 50% of the cost. It’s a win-win situation. Half of the cost instead of being in intensive care and we’re freeing up ICU beds, which are the most sought-after beds in a hospital.

But here is what really keeps me up at night, the NDIS has a duty of care to their participants. When they fund inadequate supports for someone who’s ventilator dependent with a tracheostomy like Noah, they’re not just failing to meet their needs, they’re putting lives at risk, or, in Noah’s case, he died. Because Noah’s death is proof of that.

Let’s look at why generic nursing isn’t enough. I’ve seen this way too many times. The NDIS will try to fund generic RNs without ICU experience or even worse, support workers instead of CCRNs claiming, it’s more cost effective, but here’s the reality. A registered nurse without critical care experience is not equipped to manage a complex client like Noah on a ventilator with a tracheostomy, cos that’s an intensive care nursing skill. It’s definitely not a support worker skill. It’s laughable. It’s unprofessional. It’s dangerous. It is actually outrageous.

Would you send a general practice GP to manage a patient in ICU? Of course not. So why would you expect a nurse or a support worker without critical care training to manage complex ventilation, tracheostomy, high-risk airways, life threatening and life threatening emergencies at home?

Once again, the evidence-based Mechanical Home Ventilation Guidelines set the gold standard, specifically recommend critical care trained nurses for complex patients 24 hours a day at home. That’s because the evidence shows it saves lives.

So, what do families need to know? If you’re fighting the NDIS for appropriate support for your loved one, here’s what you need to understand.

1. Get independent clinical evidence.

You need comprehensive assessments from specialists who understand ventilation, tracheostomy, critical care, and Intensive Care at Home and the home supports, make sure they reference evidence-based guidelines like the Mechanical Home Ventilation Guidelines.

Next, reference the NDIS legislation, point directly to section 34 of the NDIS Act, argue that 24/7 CCRNs are reasonable and necessary based on independent clinical evidence.

Next, challenge inadequate funding decisions if the NDIS offers generic nursing instead of CCRNs. Challenge it. Point to evidence. Point to client cases like Noah so that they can be prevented in the future, argue that it doesn’t meet your family member’s needs and puts their life at risk.

Do not under any circumstances accept cost as a reason, because once again your loved one will go back to ICU if they’re not getting the care, that will double the cost. Therefore, the NDIS can’t simply refuse funding because it’s expensive. It’s way more expensive in a hospital. If the support is reasonable, necessary, and evidence-based, they are legislatively required to fund it. It’s not a choice.

This is why working with experts like us at intensivecareathome.com is making all the difference. We understand the clinical requirements, the legislation, how to build a case that the NDIS can’t ignore. And Noah’s mom is right. Her son’s life was worth far more than the world could ever print. It’s not about money. That beautiful boy should still be here, he should still be smiling, he should still be with his mom, his best friend. But he’s not because the NDIS failed to provide the evidence-based support he needed to stay alive.

We can’t change what happened to Noah, but we can make sure it doesn’t happen to another NDIS participant or to any other patient for that matter. That means demanding the NDIS to follow their own legislation, insisting on evidence-based care standards, refusing to accept inadequate supports, fighting for every family until 24-hour intensive care nurses or CCRNs are funded when they’re clinically required.

At intensivecareathome.com, we specialize in helping families secure the critical care support their loved one’s need at home. Whether you’re dealing with NDIS, fighting for appropriate funding with any other funding body, trying to navigate complex medical care at home, we can help. We understand the clinical requirements for safe home ventilation, we understand NDIS legislation, how to use it, how to build evidence-based cases for funding, how to source and coordinate 24-hour CCRN support.

Don’t wait until it’s too late. Take action now.

If your loved one is ventilator dependent or has complex medical and disability needs and you’re not getting appropriate, either NDIS or other funding bodies don’t want to pay, call us directly at intensivecareathome.com. Speak to myself or others about your situation. Email us to [email protected]. Send us your NDIS plan or your care plan, and the NDIS decisions for review and of course, subscribe to my YouTube channel for ongoing education and advocacy tips.

Final thoughts?

Noah Johnston deserved much better. His family and his mom in particular deserve much better. And every other family in Australia with a critically ill loved one deserves better. The NDIS legislation is clear; the evidence is clear. The need for 24/7 CCRNs for complex ventilator dependent patients is clear. It’s time the NDIS stopped putting costs ahead of lives. It’s time they followed their own legislation, and it’s time we demanded nothing less than the best for our loved ones, because as Noah’s mom so beautifully put it, Noah’s life was worth far more money than the world could ever print. Every life is precious. Rest in peace, Noah. Your story will change lives.

So go to intensivecareathome.com and call us  today.

Don’t let your loved one become another preventable tragedy. Until next time, I’ll see you then.

My name is Patrik Hutzel from intensivecareathome.com

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.