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NDIS (National Disability Insurance Scheme) Funding for Sonya: How Sarcoidosis and Respiratory Failure Can Lead to 24/7 ICU Care at Home!

“NDIS funding for Sonya: How sarcoidosis and respiratory failure can lead to 24/7 NDIS funded ICU care at home.”

My name is Patrik Hutzel from intensivecareathome.com, where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies by sending critical care nurses into the home for ventilation tracheostomy, but also for tracheostomy without ventilation,  and for ventilation without tracheostomy such as BIPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure), also Home TPN (Total Parenteral Nutrition), IV antibiotics, PICC (Peripherally Inserted Central Catheter) line management, central line management, Hickman’s line management, port management, cough assist management, and palliative care at home, and more.

Today, I want to talk about Sonya, a 50-year-old lady with a long and complex ICU history. Her funded NDIS diagnosis is sarcoidosis with pulmonary involvement, which has led to chronic hypoxic respiratory failure, pulmonary hypertension, and the need for a long-term tracheostomy and ventilation. This permanent and significant disability means Sonya has lost the ability to manage her own airway, breathing, nutrition, mobility, and overall health. On top of this, she has end-stage renal disease, on dialysis, a PEG (Percutaneous Endoscopic Gastrostomy) feeding tube, and the sacral pressure injury.

So, why does this matter for NDIS (National Disability Insurance Scheme)? The NDIS Act 2013 requires that supports be reasonable and necessary, Section 34, because Sonya’s sarcoidosis has caused permanent respiratory impairment, which clearly meets NDIS eligibility under the criteria for significant and permanent disability.

From this funded diagnosis flow, the support she requires, including 24/7 tracheostomy and ventilation management funded under high intensity daily personal activities, airway suctioning and oxygen therapy, PEG feeding and nutritional management, complex wound care for her pressure injury, dialysis support and care coordination, rehabilitation and mobility support. These are all explicitly listed by the NDIS as high intensity supports which requires the skill and training of qualified critical care nurses, certainly not support workers.

Why ICU is the wrong place for Sonya? Keeping Sonya in ICU costs the health system between $5,000 to $6,000 per bed day, yet it offers her and her family no quality of life. The NDIS can fund 24-hour critical care nurses at home at a fraction of the cost, while giving her the chance to rehabilitate and live in her own environment surrounded by her family.

So, how does Intensive Care at Home make this possible? We provide independent nursing assessments that tie Sonya’s sarcoidosis diagnosis to her functional impairments and demonstrate the need for 24/7 critical care nursing. We advocate directly with the NDIS, ensuring planners and case managers understand why her needs cannot be met safely by support workers or general registered nurses. It needs to be ICU nurses. We set up the home environment with the right equipment, ventilator, tracheostomy supplies, suction monitoring, PEG feeding, and wound care equipment.

We work closely with allied health such as OT (occupational therapists) and physiotherapists to make all of that happen. We provide rehabilitation at home so she can begin to rebuild her strength. We ensure her family is supported and her NDIS plan includes both core supports, nursing care, and capacity building supports, rehabilitation, therapy, and skill development.

The bottom line, Sonya’s case is a clear example of how a funded NDIS diagnosis, sarcoidosis with pulmonary involvement leads to severe permanent functional impairments that make 24/7 critical care nursing at home not just reasonable but absolutely essential.

At intensivecareathome.com, we’ve helped many clients like Sonya transition home under the NDIS, and we are ready to help more families secure the supports their loved ones are entitled to under the NDIS (National Disability Insurance Scheme).

So, if you have a loved one in ICU with the tracheostomy and ventilation needs, similar to Sonya and the funded NDIS diagnosis, don’t accept being told hospital is the only option. With the right advocacy and NDIS support, we can bring your loved one home safely, and we also work very closely, of course, with NDIS support coordinators to make that happen.

Now, with Intensive Care at Home, we are currently sending our ICU and critical care nurses into the home, 24 hours a day. We are providing the following:

• Home care services for ventilated adults & children with tracheostomies with critical care nurses 24 hours a day
• Genuine alternative to a long-term stay in intensive care or at long-term acute care
• Tracheostomy care
• Home care services for patients on non-invasive ventilation such as Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure)
• Home TPN (Total Parenteral Nutrition), which is also known as IV nutrition
• Home IV potassium and home IV magnesium infusions, IV fluids, and IV antibiotics
• Providing central line management, PICC (Peripherally Inserted Central Catheter) line management, Hickman’s line management, as well as port management at home.
• Providing nasogastric tube and PEG (Percutaneous Endoscopic Gastrostomy) tube management at home
• Use cough assist machines for our clients for airway clearance at home
• Palliative care services at home
• Ventilator weaning 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 $2,000 per patient that we keep at home, instead of them going to an emergency department.

That also means, we’re also in a position to cut the cost of an intensive care bed by around 50%. An intensive care bed costs between $5,000 to $6,000 per bed day. Our services costs between $2,500 to $3,000 per bed day, 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. Of course, quality of life is much improved surrounded by families and by a team of dedicated intensive care nurses in the home care setting instead of in an intensive care unit.

With Intensive Care at Home, we are currently operating all around Australia in all major capital cities as well as in all regional and rural areas. We work with NDIS (National Disability Insurance Scheme) clients all around Australia, TAC (Transport Accident Commission) and WorkSafe in Victoria, Department of Veteran Affairs (DVA) all around Australia. 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 having policies and procedures for Intensive Care at Home nursing and we’ve built all the intellectual property for Intensive Care at Home since 2012. No other provider in Australia 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, which 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 long-term, or if you’re going to the hospital and ED all the time, and you realize that you don’t have the right level of support at home, or if you are stuck in an ICU, I’ll give you a real-world example today, how we can help you.

One of our first clients when we first got started in 2012, was a client who was at home initially on a ventilator with a tracheostomy with a support worker model 24/7. Of course, support workers are not equipped to look after a client at home on a ventilator with a tracheostomy. That is dangerous and it’s simply negligent. Having support workers looking after a client at home on a ventilator with a tracheostomy is like flying the airplane with a cabin crew instead of the pilot. Because anyone on a ventilator with a tracheostomy is at very high risk of medical emergencies 24/7, or even at high risk of dying if they don’t have a team of dedicated critical care nurses looking after them 24/7 at home. This is actually evidence-based and is documented in our Mechanical Home Ventilation Guidelines that you can find on our website at intensivecareathome.com.

Think about it, in an intensive care unit in a hospital, you wouldn’t have support workers looking after your critically ill loved one or after any critically ill patient on a ventilator with a tracheostomy. So, why would anyone in their right mind do that in the home care environment in the community?

So, this client at the time found out about us eventually, and the ICU that he was basically living in also knew about us and eventually reached out to us. We were proving our concept with this client very fast. When we worked with this particular client, we sent him critical care nurses, 24 hours a day. He never ever went back into ICU ever again, as long as we were working with this client.

We can do the same for you if you’re not safe at home and help you with keeping you at home predictably. Otherwise, we would not be in business. Again, the same is applicable for those stuck in an ICU, similar to this case study that I’ve just given you, or if you’re going back to ED all the time, please reach out to us. We can help you with taking you through the right steps, including how to get funding with different funding bodies.

This is also why we are providing NDIS Support Coordination. We have a team of NDIS Support Coordinators, and they have a wealth of knowledge. I’ve done an interview with Amanda Riches, one of our NDIS support coordinators, and I’ll put a link to an interview with Amanda in the written version of this blog. 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 from another organization watching this, and you’re looking for nursing care for your participants, please reach out to us as well. If you need more evidence for nursing care, we are also writing NDIS nursing assessments with legal nurse critical care consulting nurses.

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

If you are looking for a career change as a critical care nurse, we’re currently hiring for jobs for critical care nurses in Melbourne, Sydney, Brisbane, in Albury, Wodonga, in Bendigo, in Geelong, in Warragul in Victoria. If you have worked in critical care nursing for a minimum of 2 years pediatric ICU, ED, and you have already completed a postgraduate critical care nursing qualification, we will be delighted hearing from you.

I do have a disclaimer though, because we are offering a tailor-made solution 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 staff. So, if you’re looking for agency work, where you can come and go, this will not be the right fit for you. We are 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 solid relationships with us and with our clients.

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 you 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, and you get the same level of care.

If you’re a hospital executive watching this and you have bed blocks in your ICU, ED, and respiratory wards, or for home TPN, please reach out to us as well. We can help you eliminate your bed blocks very fast.

If you’re in the U.S. and 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, 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, share this video with your friends and families, and comment below what you want to see next or what questions and insights you have from this video.

Thank you so much for watching.

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

Take care for now.