Good morning, everyone, and good evening, good afternoon, wherever you are. Welcome to another intensivecareathome.com YouTube live stream. If you’re joining me from Sydney, Melbourne, from Brisbane, Adelaide, Perth or anywhere around the world, you are very welcome.

And a quick reminder: daylight savings started this morning here in Victoria, New South Wales, South Australia and the ACT (Australian Capital Territory). So if you thought you were early or late, that is why.

Please say hi in the chat and tell me where you’re watching from. If you’re an NDIS (National Disability Insurance Scheme) support coordinator, a family member, a nurse, a doctor, a hospital executive, put that in the chat as well, because it helps me to tailor what I’m talking about today and what I’m talking about in general, because I always want to make content that is relevant for you who is viewing the video.

Now, I also want to welcome our viewers on replay, because I know a lot of people are watching this on replay that can’t make it to the live session.

My name is Patrik Hutzel from intensivecareathome.com, and I’m your host of this show. We’ll be going for around 45 minutes. Today we are covering the topic of how NDIS support coordinators can advocate for 24/7 CCRN (Critical Care Registered Nurse) funding.

Here at Intensive Care at Home, we provide tailor-made solutions for long-term ventilated adults and children at home with 24/7 ICU and critical care registered nurses. We provide tailor-made solutions for long-term ventilated adults and children on BiPAP (Bilevel Positive Airway Pressure), CPAP (Continuous Positive Airway Pressure) without tracheostomy, with 24-hour ICU and critical care trained nurses. We provide tailor-made solutions for adults and children with tracheostomy at home without ventilation, with 24-hour critical care registered nurses and ICU-trained nurses. We provide home ventilation and tracheostomy weaning whenever medically appropriate. Cough assist management. We provide home TPN (Total Parenteral Nutrition), home IV (intravenous) fluids, home IV antibiotics, home IV potassium, magnesium and other electrolyte infusions, central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line and port management at home, SPC (Suprapubic Catheter), IDC (Indwelling Catheter), PEG (Percutaneous Endoscopic Gastrostomy) and PEJ (Percutaneous Endoscopic Jejunostomy) tube, as well as nasogastric tube and nasojejunostomy tube management at home. We’re providing palliative care services at home, as well as Level 2 and Level 3 NDIS support coordination, as well as TAC (Transport Accident Commission) and WorkSafe case management.

And today’s topic is really one I’m passionate about: how NDIS support coordinators can advocate for 24/7 CCRN funding, or ICU nursing funding. CCRN obviously stands for critical care registered nurse, which basically encompasses ICU and ED (Emergency Department) trained nurses. And obviously the funding would be for home care for NDIS participants, but I do believe today’s session also has many lessons around advocacy for Intensive Care at Home and ICU nursing funding at home in general. So stay tuned, even if you’re watching this in the US, in Canada, in the UK, in Ireland, in South Africa, in India, anywhere around the world. I think today’s session has many valid lessons for advocacy in general for Intensive Care at Home services.

And before we dive in, like the video, subscribe to my YouTube channel, share this video with as many people as possible who can benefit from it, click the notification bell, and leave your comments so I know what you like, what you don’t like, and what content you want me to create.

And before we dive in, let me say this upfront. If you are an NDIS support coordinator and you’re working on a case right now where someone is on a ventilator with a tracheostomy, on BiPAP without ventilation, on home TPN, and you’re struggling to get the right funding, pick up the phone and call us at intensivecareathome.com. You can call us on 1300 921 536, or you can call me on my mobile directly, 041 094 2230. I talk to NDIS support coordinators and families every single day.

And after this presentation, I will also put together a free resource for today, the 24/7 CCRN Funding Evidence Checklist for NDIS Support Coordinators. It’s a step-by-step checklist of the evidence you need, and that’ll go live once this video has been transcribed and gone onto our blog at intensivecareathome.com. So if you’re watching this on replay, it’ll probably be there.

So why does this topic matter today? I want to start with a warning, and I want to start with the Noah Johnston warning. So why am I talking about this topic today? Because every week I talk to NDIS support coordinators who are doing their absolute best for an NDIS participant, and they are hitting a brick wall. The participant is on a ventilator, or on BiPAP 20 hours a day, or has a tracheostomy, or is on TPN, needs IV fluids, you name it, and the plan comes back with disability support workers, or with nursing hours that don’t cover the night, or with nothing at all, or the plan is simply not meeting the participant’s needs.

And I want to start with a story that many of you will already know, a story that should have never happened.

Noah Johnston was 22 years old. His story has been reported in the media in January this year, and his mom, Kylie, has chosen to speak publicly about it. So I’m going to share what’s already on the public record.

Noah had a hypoxic brain injury at birth. He lived with cerebral palsy, epilepsy and chronic lung disease. And over time, he became completely dependent on a ventilator with a tracheostomy. He couldn’t take a breath on his own.

As has been reported in January 2026, the NDIS downgraded Noah’s care from 24/7 critical care registered nurses to only 12 hours a day of critical care registered nurses, with disability support workers. His family challenged that, and the matter went to the NDIS tribunal. And here’s the thing that really gets me. An independent physician’s report that the NDIA (National Disability Insurance Agency) itself had commissioned warned that Noah needed 24/7 critical care registered nurses, because any disconnection from the ventilator could be fatal within minutes. The risk was actually documented. The NDIA knew.

And in December 2025, during the night, Noah’s ventilator became disconnected from his tracheostomy. There was no registered nurse there to reconnect it, and Noah died, just as everybody who knew the case predicted. Noah’s lawyer, Belinda Kochanowska, has said publicly that if a 24/7 registered nurse had been present, Noah would still be alive. His mom has said the same thing. And I was quoted in the Daily Telegraph in January this year when the story broke as well.

Now, I’m not telling you this story to shock you. I’m telling you because if you’re a support coordinator for the NDIS, there’s a really important lesson here. The evidence was there, the reports were there, and the decision still went the wrong way and stayed the wrong way while the review dragged on. And Noah passed away while the review was dragging on. So advocacy isn’t just about getting a report in. It’s about making the risk impossible to ignore, escalating in writing, and pushing for an urgent decision when someone’s life depends on it. That’s what we’re going to talk about today.

So who actually needs 24/7 ICU nurses at home? Let’s get specific. Who are we actually talking about? Because I want to be really clear. I’m not saying every NDIS participant with complex needs needs 24/7 intensive care nurses at home. I’m talking about three groups of people, and three only.

Number one, people on invasive ventilation with tracheostomy. The ventilator breathes for them through a tube in their neck. If that circuit disconnects, if the tube blocks with secretions, if there’s any ventilation failure, if the tracheostomy tube comes out, they may have minutes, potentially seconds, definitely not hours. We’re talking about seconds to minutes. And that was Noah Johnston’s case. So in this case, 24/7 critical care registered nurses are needed, ICU-trained nurses 24 hours a day.

Number two, people on non-invasive ventilation, such as BiPAP or CPAP, without a tracheostomy, especially people who depend on BiPAP or CPAP for long periods of the day or around the clock. People who can’t take their own mask off or put it back on. People with a weak cough and lots of secretions. People that have BiPAP and CPAP needs and seizure management. We see this a lot with motor neurone disease, MND (Motor Neurone Disease), but we’ve also seen it lots with cerebral palsy, for example. And they also need 24-hour ICU nurses, critical care trained nurses, similar to an ICU, because that’s where those patients would end up if they don’t have the 24-hour ICU nurses at home, or they die, which is even worse.

Number three, people with a tracheostomy without ventilation. A tracheostomy is an artificial airway. It can block. It can come out, day or night. And when it does, someone needs to know exactly what to do within seconds and minutes.

Now, I always use the pilot analogy. If you get on an airplane, you want a trained pilot in the cockpit. You don’t want someone who’s lovely and reliable and had a 2-hour crash course. You want someone who knows what to do when the alarm goes off at 30,000 ft. It’s exactly the same with a ventilator running at 3:00 a.m. The person in the chair beside the bed has to be the pilot. They have to read the monitor, troubleshoot the ventilator, suction the airway, do an emergency tube change, bag the patient and escalate correctly, all within seconds to minutes.

And this isn’t just my professional opinion. We’ve published evidence-based Mechanical Home Ventilation Guidelines on our website at intensivecareathome.com. I’ll put a link in the show notes once this video has been transcribed on our website. They’re based on national and international guidelines, including the German S2 guideline for invasive and non-invasive ventilation in chronic respiratory failure.

And it all comes down to what the guidelines say. Mechanical home ventilation must be provided by critical care trained nursing staff 24 hours a day. The day-to-day nursing team needs a minimum of 18 months of intensive care nursing experience. We decided that’s not good enough for us. We actually go with 24 months of intensive care nursing experience minimum. As a matter of fact, the average nurse on our books probably has closer to 8 to 10 years of intensive care nursing experience. As a matter of fact, we are employing hundreds of years of critical care nursing experience combined in the community. No other provider in Australia can match that in 2026. We’re bringing the highest skill levels into the community.

The designated specialist nurses managing the care, like I said, need at least two years of recent ICU experience and a postgraduate critical care nursing qualification. And really important for NDIS support coordinators: the funding, the equipment and the resources must be secured before a ventilated or tracheostomy participant is discharged from intensive care, from hospital.

And by the way, you might also be wondering what makes me qualified to speak about a topic like that extensively. I have worked in critical care nursing for over 25 years in three different countries. As part of that, I have worked as a nurse manager in intensive care for over 5 years. I was part of setting up Intensive Care at Home services in Germany in the early 2000s with a company called Brambring Jaschke. Big shout out to Jörg and Kristoff here, who were pioneers in Germany. I was lucky enough to join them as a pioneer. Then I went traveling, went to the UK, worked in ICU there, came to Australia in 2005, and then I saw the gap in the market. I saw the need, and that’s when I started Intensive Care at Home in 2012, and that’s how long we’ve been operating.

I’m also running a consulting and advocacy service for families in intensive care, and you can find that at intensivecarehotline.com.

All in all, I can confidently say that we have saved many lives with Intensive Care at Home as well as with Intensive Care Hotline, and you can verify that on both websites in our testimonial section. So what we do is not experimental. It’s proven. It’s been around since the early 2000s in other countries. It’s been around in Australia since 2012. So we have not reinvented the wheel. We have just successfully copied what’s already happening in Germany since the early 2000s, where it is a proven and accepted model that long-term patients from ICU can go home with Intensive Care at Home services.

So let’s now look at why the NDIS refuses or reduces 24/7 ICU nursing or CCRN funding. If the need is that clear, why does funding get refused or cut? From what we’ve seen over the years, it usually comes down to a few things.

Number one, the evidence describes the diagnosis, not the risk. I see letters that say, quote unquote, “John has MND and uses BiPAP.” Okay. What does an NDIS planner do with that? Nothing. What the NDIS planner needs to understand is: How many hours a day is that person ventilator dependent? How many times a night do they need suctioning? What happens if the mask slips and they can’t move their arms? How long do they have if the tracheostomy tube blocks? How long do they have if the BiPAP comes off and they can’t put it back on themselves? That’s the story. That’s the details that need telling. The more detailed, the better. The more descriptive, the better. The more the risk is highlighted, the better. The more you can actually provide evidence and say in the reports that without 24-hour ICU nurses a patient will die, the more the penny might drop with NDIS bureaucrats who are not clinicians.

Number two, clinical tasks get treated like personal care. Ventilation management, tracheostomy care, emergency airway management, deep suctioning: they are clinical nursing tasks. When they get lumped in with showering and meal prep, it becomes easy to say, “Well, a disability support worker can do that.” Nothing could be further from the truth. Many patients have died under this so-called delegated model of care that the NDIS says is sufficient. Plenty of people have died under that model, and the NDIS knows exactly what clients I’m talking about, because I’ve lodged all these incidents with the NDIS Quality and Safeguards Commission as a warning before they passed away. Unfortunately, I was right every single time that if 24/7 critical care registered nursing funding is removed, people will die, and unfortunately, I was right.

Number three, delegated care gets used as a default. Now, I want to be fair and accurate here. In some states and under some frameworks, certain tasks can be delegated to trained support workers under the supervision of a registered nurse. For some very stable clients, that may be appropriate. But for someone who’s fully ventilator dependent, or has a tracheostomy, who has a high-risk airway, who can’t call for help, needs, for example, TPN, IV fluids, etc., delegation is not appropriate, and it has cost lives. It should never be the cheap default, and in my clinical view, for the three groups I just described, it is not safe, and like I said, people have died, and it could have been prevented.

Number four, the health versus disability argument. Sometimes NDIS planners say this is a health system issue, not an NDIS issue. But under the NDIS rules, disability-related health supports, and that can include respiratory and tracheostomy-related supports, can be funded where they’re needed because of the person’s disability and they meet the reasonable and necessary criteria. Your evidence needs to make that link really clearly. To put this in a tangible example, take MND, motor neurone disease, which is the funded NDIS disability. That in and of itself doesn’t mean anything, but because it’s a funded disability, it leads to those disability-related health issues, which are BiPAP dependency, tracheostomy, PEG tube. So that’s the link, and that’s when the NDIS actually needs to fund. And it doesn’t matter whether it’s MND. It could be cerebral palsy. It could be anything else.

Number five, informal supports are overestimated. Is it reasonable to expect a mom or a dad or a spouse or a partner to stay awake every night watching a ventilator and then go to work, look after the other kids, run a household? Is that reasonable? Absolutely not. It is insanity, and the evidence should say so.

Number six, short plans and reassessments. Even when 24/7 nursing gets funded, it can be cut at the next reassessment if the evidence hasn’t been kept current. So this is ongoing work, not a one-off. Keep that in mind.

Next, tracheostomy, non-invasive ventilation and MND. Now let’s talk about MND specifically, because I get so many questions about it. And let me say first, the decision about whether someone has a tracheostomy, stays on BiPAP, or chooses neither is a deeply personal decision. It’s made by the person with their neurologist, their respiratory physician and their family. My job today is to explain the options, not to tell anyone what to do.

Let’s look at non-invasive ventilation. BiPAP is usually the first step when MND starts to weaken the breathing muscles. It’s through a mask, often just overnight to start with. For a lot of people, it improves sleep, energy, headaches and quality of life in general. But MND is progressive. Over time, some people need BiPAP more and more of the day, and some become dependent on it around the clock. And then you’ve got real clinical challenges: mask fit, pressure injuries on the nose and face, secretions they can’t clear because the cough is weak or absent. And if the mask comes off at night and they can’t put it back on themselves, that is a serious risk. That’s when 24/7 critical care registered nurses come into the picture for BiPAP-dependent clients.

Next, tracheostomy ventilation is an option for some people with MND. Our evidence-based home mechanical ventilation guidelines describe when it may be considered: when non-invasive ventilation can’t be fitted, isn’t tolerated, or isn’t working anymore; when there are severe bulbar symptoms and recurrent aspiration; or when secretions can’t be managed non-invasively. And always, always, always in line with a fully informed person’s wishes and consent.

And here’s what frustrates me immensely. I mentioned a minute ago that I was working in the Intensive Care at Home space in Germany in the early 2000s, and home tracheostomy ventilation for MND has been part of the system there for decades. In Australia, it’s offered far less often, and I hear from families all the time who were never told it’s even an option. You’ve probably seen the media coverage recently about people with MND fighting for access to tracheostomy here in Australia, people like Aaron Reardon in Brisbane. And people deserve to know all their options so they can make an informed choice. And some people will choose neither. They’ll choose comfort and palliative care, and that’s a valid choice that deserves to be respected and supported just as well. But there needs to be choice, and Australia can’t limp 30 years behind what other countries have been doing for 30 years and deny people choice and control. That is unheard of. It can’t happen, mustn’t happen, in a first world country like Australia.

So coming back to the big question today: Does the NDIS fund 24/7 ICU nurses or critical care registered nurses for people with MND? The answer is yes. We have seen the NDIS fund 24/7 critical care registered nurses for some participants with MND, both with tracheostomy ventilation and with around-the-clock BiPAP ventilation, where the clinical evidence clearly showed the needs. Every case is decided on its own merit and on its own evidence. So nobody can guarantee an outcome, but it’s possible with the right evidence, and that’s exactly why the quality of the evidence matters so much.

And one more thing, because I’ll keep saying it over and over again: NDIS access depends on applying before you turn 65. If you’re diagnosed with MND at 66, you’re in the aged care system, and it’s a completely different and, frankly, much harder story. That’s a system gap that needs fixing urgently, because MND clients after the age of 65 get offered voluntary assisted dying instead of 24-hour nursing care. That is extremely concerning. It’s actually shocking that in 2026, in a first world country like Australia, we are discriminating against people above the age of 65. That is unheard of. That needs to stop. We must value life and not offer people voluntary assisted dying to leave this earth instead of providing them with the option of 24-hour nursing care if they choose. So I’m all for choice and control. If people choose voluntary assisted dying, then I respect that too. But I do believe the emphasis needs to be on life, not on death.

Let’s now look at the NDIS support coordinator’s advocacy playbook. This is the practical part. If you’re an NDIS support coordinator, grab a pen, or better still, look at the transcript that I’ll be publishing after this video goes live on our blog at intensivecareathome.com, because it follows the steps that I’m going to discuss. And everything I’m about to say happens with the participant’s consent, with the participant at the center.

Step number one, start with the NDIS participant’s goals. Under section 34(1) of the NDIS Act, it starts with the participant’s goals. What does this person want? To live at home with their family, to stay out of hospital, to see their kids grow up, to keep studying. Write their goals down in their own words. Everything else connects back to that.

Step number two, get the treating specialist on paper: the respiratory physician, the neurologist, the ICU specialist, the rehab specialist. Ask for a letter that covers diagnosis and prognosis; the type of ventilation and the hours of dependency; the airway risk, so what happens if there’s a disconnection, a blockage, or the tube comes out; secretion and cough management; and their professional opinion on the level of nursing needed. And I want to be clear: it has to be the specialist’s own opinion. You’re asking them to put their clinical judgment in writing, not to sign something you wrote.

Step number three, get an independent CCRN nursing assessment. You need someone with critical care nursing experience to assess the person and write a detailed nursing assessment. That should include a 24-hour breakdown of clinical tasks, how often interventions happen overnight, emergency scenarios, emergency procedures, response times, skills needed, a proper clinical risk assessment, and a clear statement on whether delegation to support workers is clinically safe or not for this type of participant.

Step number four, map everything to the reasonable and necessary criteria. Section 34(1) of the NDIS legislation has a list of criteria. Don’t make the planner join the dots. Address each one directly. Does the support help the participant pursue their life goals? Does it support social and economic participation? Is it value for money? Is it likely to be effective and beneficial, having regard to current good practice? And this is where, again, our evidence-based mechanical ventilation guidelines, which are national and international evidence, come in. What’s reasonable to expect of family and informal supports? And is it most appropriately funded by the NDIS?

On value for money, here’s an argument people forget. Compare 24/7 critical care registered nurses or ICU nursing care at home with long-term ICU beds. In our experience, home care with Intensive Care at Home costs around 50% of what an ICU bed costs, and it frees up that precious, scarce and high-in-demand ICU bed for someone else. That is definitely value for money.

Step number five, medical records and incident history. This is huge. Every hospital admission, every ICU admission, every near miss, every emergency tube change, every ventilation failure, every time the mask fails, every ambulance call-out, every sign of carer burnout: keep a dated log. Request hospital discharge summaries and medical records. Participants have a right to access their own medical records. Records turn high risk from an opinion into a documented and evidence-based pattern.

Step number six, don’t let a ventilated participant leave ICU without funded 24-hour ICU nursing care. Our evidence-based mechanical ventilation guidelines are clear on this. If someone’s getting ready to leave ICU on a ventilator or with a tracheostomy, the funded supports need to be in place first. Push for discharge planning meetings early, put the risks in writing, and get the funding approved.

Step number seven, escalate risk in writing and use the review pathways. If the plan doesn’t fund what the evidence says is needed, help the participant request an internal review. That’s generally within 3 months of the decision. And if the review doesn’t fix it, the Administrative Review Tribunal, generally within 28 days of the review decision. And where there’s an immediate risk to life, say so in writing clearly and ask for an urgent decision. Make sure the treating team knows and that the participant has an emergency plan in place. Remember Noah Johnston. Don’t let a review drag on quietly while someone is at risk.

Step number eight, make sure there’s enough support coordination in the plan. Complex, high-risk situations often need Level 3 NDIS specialist support coordination, and enough hours to actually do this work properly. If you’re running out of hours halfway through a review, that’s a problem for the participant, and that can be a life-threatening problem for the participant.

Next, I know some of you watching are thinking, “Patrik, this is a lot. I’ve got a participant in exactly this situation right now.” So let me tell you how we can help. If you need 24/7 critical care registered nurses at home, or a detailed CCRN nursing assessment to support a funding application, call us at intensivecareathome.com. Call us on one of the numbers on the top of our website, or you can even call me on my mobile phone directly, 041 094 2230, or you can also book a call with me on the website through the schedule appointment button, or you can send me an email to [email protected].

Also, what’s important, like I said: you need the doctor’s letters, you need the nursing reports, you need the OT (Occupational Therapist) functional capacity assessment, you need the physio report, the speech therapy report. You need all of them, and they all need to say the same: that 24-hour critical care registered nurses and ICU nursing is needed.

And if you’re a family or a support coordinator who wants independent advice from a critical care nurse, you can contact me, or you can also have a look at our sister site at intensivecarehotline.com.

Now let’s quickly talk about Intensive Care at Home, and a word on choice and control. Let me tell you a little bit more about Intensive Care at Home for those of you who are new. We are, to my knowledge, in 2026, Australia’s only third-party accredited Intensive Care at Home nursing service, a specialist home ICU nursing provider. In 2026, we’re accredited to ISO (International Organization for Standardization) 9001:2015 for Intensive Care at Home nursing, and we’re also a registered NDIS provider, and you can read all about that on our accreditation and quality page on our website at intensivecareathome.com/accreditation-quality.

So why does third-party accreditation matter? Because it means an independent organization has audited our systems, our processes, our intellectual property and our quality. It’s not just us saying we’re good. Someone has independently checked.

We work exclusively with critical care trained registered nurses, i.e., ICU nurses. And we have hundreds of years of critical care and ICU nursing experience combined employed here, which means the average ICU nurse here has around 8 to 10 years ICU experience. Something I’m very proud of. We managed to assemble the highest skilled team in the community in Australia in the Intensive Care at Home nursing space.

Right now, we operate all around Australia, in all states and territories, in all regional, remote and metropolitan areas. We work with NDIS, TAC, WorkSafe, DVA (Department of Veterans’ Affairs), private health funds, departments of health, hospitals directly, and private funding. And like I said, we also provide Level 2 and Level 3 NDIS support coordination, which obviously includes specialist support coordination. We also provide TAC and WorkSafe case management.

And I want to say something really important here, because it matters to me and it matters to the NDIS Commission as well. Because we provide both support coordination and nursing, we take conflicts of interest seriously. If we are your support coordinator, you are completely free to choose any nursing provider you like. Choosing us for one service never means you have to choose us for another. And every support coordinator, including ours, should be presenting options and helping the participant make their own informed choice. Choice and control belongs to the participant, full stop.

Let’s now do some questions and answers. Thanks to those of you that have sent questions in before today’s live show. And if you have a question now, please type it into the chat. I’ll get to them in one second. I do need to moisten my throat so I don’t lose it, and then we’ll get to questions and answers.

So number one: Can the NDIS actually fund 24/7 registered nurses at home?

Yes, it can, as a disability-related health support, where it meets the reasonable and necessary criteria for that person. But it depends entirely on the individual’s evidence. There are no guarantees, which is why the evidence has to be so strong. To recap, take MND, take cerebral palsy, take a stroke, all NDIS-funded diagnoses. The NDIS will fund 24/7 critical care registered nurses for ventilation, tracheostomy, tracheostomy ventilation and so forth, if the health issues are a result of the funded NDIS disability, i.e., a stroke leads to ventilation and tracheostomy. That is likely to succeed. But the evidence has to be robust. It needs a specialist doctor’s letter, an independent NDIS nursing assessment, an OT functional capacity assessment, a physiotherapy assessment, potentially a speech assessment, and they all need to say the same: that 24-hour critical care registered nurses are needed, for the reasons that are broken down.

Next question: What’s the difference between a registered nurse and a critical care registered nurse?

A critical care registered nurse is a registered nurse with specialist intensive care experience and specialist intensive care training, usually a postgraduate critical care nursing qualification. Under our evidence-based mechanical home ventilation guidelines, the day-to-day team caring for a ventilated person at home needs at least 18 months ICU experience. Because it’s a specialist skill set, we have gone even further. We say they need a minimum of 24 months ICU experience.

Next question: Can a support worker manage a tracheostomy or a ventilator?

You could argue in theory they could, and you could argue that some tasks could be delegated to trained support workers under supervision in some situations. But in my clinical experience, for people on invasive ventilation, non-invasive ventilation such as BiPAP or CPAP, and people with a high-risk tracheostomy, you need 24-hour ICU-trained critical care registered nurses, and that decision always has to come from an individual clinical risk assessment. Keep in mind, if a patient or a participant like that goes back into hospital, they’re not being sent to the car park. They’re being sent to ED and ICU, and there are critical care registered nurses in ICU and ED. Why would it be any different in the community?

A support coordinator asks: “My NDIS participant’s plan was just cut. What do I do first?”

Great question. I’m glad you’ve asked. Check the date of the decision, because the internal review window is generally 3 months. Gather the specialist letters, the CCRN nursing assessment, the OT functional capacity assessment, the physio assessment, the speech therapy assessment, and the incident history. If there’s an immediate risk to life, put it in writing to the NDIA straight away and ask for an urgent decision. And give us a call at intensivecareathome.com if you need help.

Next: Is tracheostomy ventilation really an option for MND in Australia?

It can be, for the people who choose so. It depends on the person’s condition, their wishes and their treating team. It’s offered less often here in Australia compared to Germany. My advice is, ask the neurologist and the respiratory physician about all the options so the decision is a fully informed one.

Next: Does the participant have to be under 65 to access the NDIS?

Yes. The person needs to apply before they turn 65. Once someone’s a participant, they can stay on the scheme. People diagnosed after the age of 65 go through aged care, and that’s a much harder road for this level of care. I covered this earlier.

Next: Do you only work in Melbourne?

No. We work across all states and territories around Australia, in all regional, rural and metropolitan areas. And once again, if you’re in the US, in the UK, in Canada, India, anywhere around the world, and you’re interested in Intensive Care at Home, we welcome your call. We can help you there through different avenues.

So let me bring this all together. When someone depends on a ventilator, BiPAP machine or a tracheostomy to breathe, the question isn’t whether they need care. The question is whether the person beside the bed at 3:00 a.m. has the skills to keep them alive. NDIS support coordinators, you have a very powerful role in that. Your job is to make sure the evidence says it clearly, to escalate when it’s ignored, and to keep the participant’s goals and choices at the center of everything.

Noah’s family fought for the care the evidence said he needed. Let’s make sure the next family doesn’t have to fight that hard. If you’re working on a case like this, don’t do it alone. Call us at intensivecareathome.com on 1300 921 536, or call me on my mobile on 041 094 2230. You can book a call with me through the website. Click on the schedule appointment button, or send me an email to [email protected].

Also, our own NDIS support coordinator is very happy to work with you and show you the tools of the trade. We are very collaborative here, and we want to help everyone to get the best outcomes. Thank you so much for joining me today. Like, comment, subscribe, share this video with anyone who will benefit from it, and I will talk to you again next week.

 

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 long-term stay in intensive care for:

• Ventilation
• Tracheostomy
• Home BiPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure)
• Tracheostomy care without ventilation
• home TPN (Total Parenteral Nutrition)
• Home IV potassium
• Home IV magnesium
• Home IV antibiotics
• Home IV fluids

We’re providing:

• Cough assist management at home
• Ventilation weaning management at home
• central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line as well as port management at home
• nasogastric tube, nasojejunostomy tube, PEG (Percutaneous Endoscopic Gastrostomy), PEJ (Percutaneous Endoscopic Jejunostomy) tube management at home
• IDC (Indwelling Catheter) and SPC (Suprapubic Catheter) management at home
• 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 Health District’s In Touch program, saving approximately $2,000 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.

Our Coverage and Accreditation

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 Veterans 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 Need Help

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 advocate successfully for funding from our first case study 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 or 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.

There are plenty of examples where clients with support worker models or even RN (registered nurse) models without ICU experience have died at home and I 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.  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. 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. Their 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. But 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.

Our Support Coordination Services

This is also why we are providing Level 2 and Level 3 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.

Join Our Team

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, Albury-Wodonga, Bendigo, Geelong, Warragul, and also in Wyelangta in Victoria.

If you have worked in critical care nursing for a minimum of two 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 tailor-made solutions for our clients which includes regular staff, our clients do also 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.

For Medical Professionals and Healthcare Executives

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 help to take the pressure off your ICU and ED beds. 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, and 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 beds.

International Support

If you’re in the U.S. or in the UK 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 Hotline. 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.