MND (Motor Neuron Disease) and ALS (Amyotrophic Lateral Sclerosis) and Tracheostomy in Australia: What Your Doctors Won't Tell You, But You Must Know

My name is Patrik Hutzel from Intensive Care at Home at 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 BiPAP (Bilevel Positive Airway Pressure), CPAP (Continuous Positive Airway Pressure), non-invasive ventilation, where we provide tailor-made solutions for long-term tracheostomy adults and children without ventilation, where we provide tailor-made solutions for home ventilation weaning, cough assist management, home TPN (Total Parenteral Nutrition), home IV antibiotics, home IV fluids, home IV potassium, home IV magnesium infusions, home central line management, home PICC (Peripherally Inserted Central Catheter) line management, Hickman’s line as well as port management at home. We are also providing IDC (Indwelling Catheter) and SPC (Suprapubic Catheter), nasogastric, nasojejunostomy, PEG (Percutaneous Endoscopic Gastrostomy) and PEJ (Percutaneous Endoscopic Jejunostomy) tube management at home, as well as palliative care management at home.

I am a critical care nurse by background, having worked in critical care nursing for over 25 years in three different countries. I am the founder of Intensive Care at Home, founded in 2012. We are Australia’s only third-party and NDIS (National Disability Insurance Scheme) registered provider for Intensive Care at Home nursing. We have built the intellectual property for it.

Today I want to speak directly to anyone living with MND (Motor Neuron Disease) or ALS (Amyotrophic Lateral Sclerosis) in Australia who has been told bluntly, harshly, and without explanation or consultation, that a tracheostomy is not an option for them.

I have a question from Dion in Brisbane. Dion says:

“Hi Patrik,

I have MND, diagnosed in March 2026. I asked the MND clinic doctors if I could learn more about a tracheostomy, as I want one when it is due. I was told very bluntly, no, we don’t do this in Australia. With today’s technology, I want to live but need help. I have NDIS and I live in Brisbane. Please help.

From Dion.”

Dion, thank you so much for reaching out. Your question takes real courage, and I want to give you real answers — ones that your MND clinic may not have been willing or equipped to provide. I also want you to know that we can help you here at Intensive Care at Home, no matter what you decide. A tracheostomy may be right for some MND clients and may not be for others. I am not here to make that decision for you, but I am here to give you options and to guide you.

The answer is this: you absolutely can have a tracheostomy in Australia if you have MND or ALS. You absolutely can go home on a ventilator, and you absolutely can be funded through the NDIS to have critical care registered nurses support you around the clock so that you can live safely at home on your own terms. If that sounds impossible given what you were told, stay with me, because I am going to show you exactly how this works, who is doing it right now, and what you need to do next — which includes, but is not limited to, advanced care planning.

What Is a Tracheostomy and Why Does It Matter for MND and ALS?

Motor Neurone Disease, also known internationally as ALS, is a progressive neurological condition that attacks the nerve cells controlling your muscles, including the muscles you use to breathe and swallow. As MND progresses, most people will eventually lose the ability to breathe and swallow independently. At that point, you have choices. Invasive tracheostomy ventilation is one of the most effective and well-established of those choices.

A tracheostomy is a surgical opening into the neck that allows a tube to be inserted into the windpipe — the trachea — bypassing the upper airway entirely. That tube is connected to a mechanical ventilator which breathes for you. It gives you complete, reliable ventilation support 24 hours a day, 7 days a week.

For people with MND, this matters enormously because:

It bypasses the muscles of swallowing and speaking that MND progressively weakens
It allows effective suctioning of secretions, reducing the risk of chest infections
It provides full ventilation control — the ventilator does the breathing work your body can no longer do
It can dramatically extend life and maintain quality of life for years
It can be managed safely in your own home with specialist nursing support

Everything is evidence-based. Our published evidence-based Mechanical Home Ventilation Guidelines at www.intensivecareathome.com confirm that invasive tracheostomy ventilation at home has been used successfully for decades, with large published case series in both adults and children, which includes MND and ALS. It is explicitly identified as one of the primary conditions requiring this life-sustaining support 24 hours a day with critical care trained nurses.

What Your MND Clinic May Not Be Telling You

When Dion was told “we don’t do this in Australia,” that statement requires unpacking, because it is not accurate as a blanket statement. It may reflect the limitations of that particular clinic, service, or clinician — not the reality of what is medically and practically possible.

What may be true is that:

Some MND clinics in Australia do not routinely offer tracheostomy as part of their care pathway
Some clinicians have philosophical positions against prolonged mechanical ventilation in MND
Some health systems are not set up to transition MND patients safely from hospital to home on a ventilator
Some clinicians are genuinely unaware that a specialist service like Intensive Care at Home exists in Australia

But none of that means it cannot be done. It means you need the right team around you, and that is where we at Intensive Care at Home come in.

I have seen this pattern repeated many times over more than 25 years in critical care, both in Germany and in Australia — families and patients who were told “nothing more can be done” or “this isn’t available here,” who went on to live well at home on a ventilator with the right nursing support 24 hours a day with a tracheostomy.

Germany’s 25-Year Track Record and Australia’s 13-Year Track Record with MND

I trained and worked as a critical care registered nurse in Germany before coming to Australia in 2005. In Germany, home ventilation for patients with MND and ALS has been standard clinical practice for over 25 years, whether non-invasive ventilation with BiPAP and CPAP, or invasive ventilation with a tracheostomy.

Germany established proof of concept for Intensive Care at Home in the late 1990s and early 2000s, and I was part of it. I helped establish Intensive Care at Home in Germany before setting it up in 2012 in Australia. Patients with progressive neuromuscular diseases, including MND and ALS, routinely receive tracheostomy invasive ventilation and go home with specialist 24/7 intensive care nursing teams supporting them around the clock, 24/7 365 days a year.

These are not experimental arrangements. They are fully developed, government-funded, well-governed care models that have been running reliably since the late 1990s in many European countries, but mainly in Germany. We have been running very successfully in Australia since 2012.

The outcomes speak for themselves:

Patients with MND in Germany regularly live for years, sometimes more than a decade, following tracheostomy at home ventilation
Quality of life is maintained through communication devices, powered wheelchairs, eye gaze technology, and community inclusion
Hospital and ICU (Intensive Care Unit) readmissions are dramatically reduced when specialist nursing is present in the home 24/7 with critical care trained nurses
The model is cost-effective when compared to long-term ICU hospitalization

The most prominent patient with MND was Stephen Hawking from the UK, who lived with a ventilator and a tracheostomy for decades, contributing to society as a scientist. If Stephen Hawking could do it, others can too — but the key point is that, similar to our MND clients here, he had 24-hour intensive care nurses.

Our evidence-based Mechanical Home Ventilation Guidelines on our website at intensivecareathome.com confirm that mechanical home ventilation as a treatment of choice has been employed for many decades, mainly in countries such as Germany, Austria, and now Australia. Germany’s experience is not a pilot program. It is proof that this works. It is also proof that choice and control for patients and families works. Australia is catching up, and we at Intensive Care at Home are leading that change.

MND and Tracheostomy in Australia Today

I want to tell you about Ian Haywood, one of our current clients living with MND in Australia, who has a tracheostomy and is supported by Intensive Care at Home nurses, funded by the NDIS 24 hours a day, 7 days a week. Ian received a tracheostomy in 2019 because he had an advanced care plan — meaning he advocated for his own tracheostomy before he even needed it.

Ian’s situation attracted national media attention in 2021 when his NDIS funding for 24/7 nursing care was at risk of being cut — a decision that put his life at immediate risk and led to coverage in The Guardian newspaper in Australia. Ian was facing, for a period of time, re-hospitalization because without 24/7 critical care registered nurses in his home around the clock, he simply could not have survived. You can read The Guardian‘s coverage of Ian Haywood’s case via the link provided.

Ian’s story illustrates two critically important realities:

First, MND patients with tracheostomies are living in Australia right now in 2026, supported by Intensive Care at Home‘s specialist nursing team. This is not theory. This is happening right now.

Second, funding for this level of care is possible, and when it is in place, it is life-sustaining. When it is threatened or cut, it puts lives at direct risk.

Ian Haywood and others with a tracheostomy and MND are alive at home today in 2026 in Australia. So Dion, whatever your MND clinic told you in Brisbane, it is simply not accurate. You are more than welcome to contact me, and I can give you more information about how those clients got a tracheostomy. Some of it comes down to advanced care planning, documenting what you want if you ended up in ICU or deteriorated and needed a breathing tube, which can then be replaced with a tracheostomy in many MND cases. That is the power of what we do.

Key point for you, Dion, and anyone in a similar situation: you are not alone. You are not the first person with MND in Australia to want a tracheostomy, to want to go home, and to want to live. There are people doing exactly this right now in 2026 with our support. This path exists. We know how to navigate it.

Our Evidence-Based Approach

At Intensive Care at Home, we do not improvise. Everything we do is grounded in our evidence-based Mechanical Home Ventilation Guidelines, which are published on our website and inform every clinical decision we make. These guidelines cover:

Invasive tracheostomy ventilation — the method most relevant for advanced MND and ALS
Non-invasive ventilation (NIV), BiPAP, CPAP, APAP (Auto-titrating Positive Airway Pressure), VPAP (Variable Positive Airway Pressure) — often used in earlier stages of MND before a tracheostomy
Client and family selection criteria for home ventilation
The minimum staff qualifications required — critical care registered nurse level — to safely support a ventilated patient at home
The full range of neuromuscular diseases, explicitly including MND and ALS, that are appropriate for home ventilation

The guidelines make one thing absolutely clear: any nursing service providing home ventilation support without critical care trained nurses puts the ventilated patient at risk. This is not a preference. It is a clinical and ethical minimum standard that is evidence-based.

That is why we at Intensive Care at Home operate exclusively with critical care registered nurses. We have over 150 of them across Victoria, New South Wales, the ACT (Australian Capital Territory), and Queensland. They are not general community nurses. They are specialists with ICU-level clinical competencies, trained and experienced in exactly the kind of complex care that Dion and people like Ian Haywood require.

NDIS Funding for 24/7 Critical Care Nursing at Home

If you have NDIS funding and you live with MND or ALS, you may be entitled to have 24/7 critical care registered nurses in your home, fully funded through your NDIS plan.

This is not simple to navigate, but the NDIS funding process for high-intensity nursing support is achievable. Yes, it is complex, and many NDIS support coordinators, plan managers, and even NDIS planners do not fully understand the clinical complexity involved. That is why specialist advocacy and specialist clinical input matter enormously.

Here is what you need to know:

NDIS covers high-intensity nursing supports for participants with life-sustaining needs, including ventilator dependency at home
24/7 nursing funding is possible and has been successfully established for virtually all of our Intensive Care at Home clients who are NDIS-funded
The clinical case must be made clearly and compellingly, which requires people to understand both the clinical complexity and the NDIS framework

We work with NDIS participant support coordinators and families to build that case and advocate for the right level of support. This also includes working with OTs (Occupational Therapists), physiotherapists, speech therapists, doctors, nurses, and others.

We operate all around Australia — in all major capital cities, in all states and territories, and in all regional and rural areas — which means Dion in Brisbane is absolutely within our service reach.

Dion, you said you already have an NDIS plan. That is a critical starting point. We can help you understand what your plan may support now and how to advocate for the right level of funding to keep you safely at home on your own terms.

Quality and Safety

When you are choosing a nursing service to support you or someone you love on a home ventilator with a tracheostomy, you are making one of the most consequential decisions of your life. The wrong choice can be fatal. That is why accreditation matters.

We are proud to be Australia’s only third-party accredited specialist home nursing provider for Intensive Care at Home nursing. That means we are the only Intensive Care at Home nursing service that has built the policies, procedures, and intellectual property — verified independently by government auditing bodies. You can view the full details of our accreditation at intensivecareathome.com/accreditation-quality.

Our accreditation includes, but is not limited to:

ISO 9001:2015 Quality Management System certification
NDIS Quality and Safety Commission certification
Independently audited by BSI Group

Our NDIS provider number is 4050000298.

No other Intensive Care at Home nursing service in Australia holds this level of third-party verified accreditation. This is not a marketing claim. It is a verifiable, independently audited fact.

For a family making a life-or-death decision about home nursing support for a loved one with MND, that accreditation is not a detail. It is the difference between a service you can trust and one you cannot.

So why does accreditation matter for MND and ALS home nursing?

Tracheostomy care and invasive ventilation management in the home require specialist-level competency. Our ISO 9001:2015 and NDIS-accredited clinical governance framework means every nurse we send to your home meets rigorous, audited standards. It also allows us to not only employ but also attract and retain only critical care registered nurses, ask other providers if they can attract the most highly trained nurses in the country, which are critical care trained nurses that we manage to deploy successfully into the community bringing you the highest level nursing skills into your home.

What You Need to Do Right Now

If you are living with MND or ALS in Australia — or if you are a family member, NDIS support coordinator, case manager, or clinician supporting someone in that position — here is what I want you to do:

Do not accept a blanket no. If an MND clinic has told you that a tracheostomy is not done in Australia, or that going home on a ventilator, whether invasive or non-invasive, is not possible, do not accept that as the final word. Seek a second opinion. Speak to a service that specializes in exactly this area, and that is us.

Understand your NDIS options. Get your current NDIS plan reviewed by someone who understands high-intensity nursing supports, who can help you understand what is possible and how to advocate effectively for the right level of funding. Also know that the NDIS actually has a dedicated MND NDIS pathway, and we have used that pathway for one of our MND clients.

Contact us at intensivecareathome.com. We have been doing this since 2012. We have MND clients with tracheostomies in our care right now. We also have MND clients without tracheostomies on BiPAP, with PEG tubes and cough assist machines. We know how to help you. This conversation starts with a phone call or an email.

Final Thoughts

Dion, I want to close by speaking to you directly one more time. You were diagnosed with MND in March 2026. You did something that many people in your situation don’t do. You asked. You pushed back. You said, with today’s technology, I want to live. That instinct is right. That fight is worth fighting, and you do not have to fight it alone.

We have been helping people like you since 2012. Even in my early nursing career, I was looking after MND patients with tracheostomies in Germany in the early 2000s. This is not a novelty. We are talking about something that people are entitled to, and have been entitled to, for a long time.

Think about Stephen Hawking — a very prominent figure who lived with MND and a tracheostomy for decades. He was working. He contributed to society. You can do the same.

We have clients with MND and tracheostomies living at home right now in Australia. We have navigated the NDIS for families in exactly your situation since the NDIS has existed. We have the clinical expertise, third-party accreditation, the nursing team, and the experience to help you do what you have already decided you want to do.

Please call us or reach out via our website at intensivecareathome.com. You can call me directly on my mobile on 0410 942 230 — that’s again 0410 942 230.

The conversation you have with us will be very different from the one you had at your MND clinic, and it will change everything.

If you know someone living with MND or ALS in Australia who has been told that tracheostomy or home ventilation is not possible, please share this post and this video. The information here could save your life.

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.