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Hi, it’s Patrik Hutzel from Intensive Care at Home, where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies, and where we also provide tailor-made solutions for hospitals and intensive care units whilst providing quality services for long-term ventilated adults and children with tracheostomies and medically complex patients at home, including home TPN.
So, in today’s blog post, I want to talk about, “What role NDIS (National Disability Insurance Scheme) support coordinators or specialist support coordinators play with Intensive Care at Home clients, or also what role NDIS support coordinators or specialist support coordinators play when it comes to long-term ventilation with tracheostomy for adults and children?” So, let’s break this down today because with us working in the NDIS space in Australia, we work with a number of NDIS support coordinators and we talk to a lot of NDIS support coordinators, or in some instances NDIS specialist support coordinators. As a matter of fact, given that our NDIS participants are medically complex, generally speaking, with a high degree of disability, we often work with specialist NDIS support coordinator. So, let’s get to the nitty gritty of it.
Obviously, for anyone watching this, the NDIS is the National Disability Insurance agency in Australia. We, as a service, operate all around Australia with NDIS participants, but also with other funding schemes, of course.
So, one thing has become apparent when we talk to NDIS support coordinators, they don’t even know that the NDIS is funding nursing care. As a matter of fact, they’re funding specialist nursing care like they do with Intensive Care at Home. We send intensive care nurses into the home predominantly for long-term ventilation and tracheostomy, but also for clients or non-invasive ventilation, or for clients that are not ventilated, but have a tracheostomy. We provide home TPN (Total Parenteral Nutrition), which is IV or intravenous nutrition. It’s all NDIS funded as well as it’s funded through other often government bodies, or private health insurance, or hospitals directly.
Anyway, the purpose of this video is to not only educate NDIS support coordinators or especially support coordinators, but also to educate families or NDIS participants that funding is available through the NDIS for intensive home care nursing. Otherwise, we wouldn’t be in business. Otherwise, I wouldn’t be standing here making this video.
So, a lot of NDIS support coordinators unfortunately don’t have a clinical background, and they often don’t understand the advocacy process as well that needs to go in to getting the 24-hour nursing care for someone on a ventilator with a tracheostomy, whether they’re an adult or a child.
Now, before I go deeper into the subject, there’s also the issue of what does the Department of Health do? Is it health versus disability? Both is playing a role, and as you may well be aware, the state governments in Australia, as well as the federal governments, have the so-called COAG (Council of Australian Governments) agreement where the NDIS is paying for parts of the healthcare sector and vice versa, from what I understand, anyway. So, the notion that the NDIS should not be paying for any healthcare related issues is not accurate because of, once again, the COAG agreement between the states and the federal government.
So, coming back to NDIS support coordinators, one thing that you need to understand first and foremost is that when someone is ventilated with a tracheostomy or not ventilated, but has a tracheostomy, they need an intensive care nurse, 24 hours a day.
Now, when you look on our website at the mechanical home ventilation guidelines that are evidence-based, you will see that those evidence-based guidelines are clearly saying that only intensive care nurses with a minimum of two years ICU or pediatric ICU experience can look after ventilated or tracheostomy clients at home. That’s a minimum standard, and we can provide that minimum standard because we exclusively employ intensive care nurses or pediatric intensive care nurses with a minimum of two years critical care nursing experience. Most of our nurses, as a matter of fact, have a post-graduate critical care nursing qualification. Now, that’s the evidence.
Next is the accreditation, third party accreditation. As far as I’m aware, we are the only service provider in Australia that has NDIS and ISO (International Organization for Standardization) accreditation for Intensive Care at Home nursing, which makes us the only private service that is third-party accredited to look after ventilated and tracheostomy clients in the home, but also other services such as home home TPN.
Next, we are well aware that some support worker agencies are trying to do intensive care nursing work and that’s frankly quite rather dangerous. It’s like flying an airplane with a cabin crew instead of the pilot. Now, to make it more tangible even, but also, more dramatic even, we know, and we have evidence that at least five clients in the community have passed away in the last few years because of support worker agencies, families, or even general registered nurses could not manage medical emergencies with ventilation and tracheostomy, and clients have passed away in the home because of that.
So, for any NDIS support coordinator watching this, you need to understand the gravity of the client’s condition when you’re dealing with a ventilator and a tracheostomy. If those clients couldn’t be managed at home with our service, they would be back in intensive care. So, you need to understand the gravity of it. I also have found out that sometimes NDIS support coordinators don’t even understand the gravity of ventilation and tracheostomy that this requires intensive care skills.
So next, you may also find whether you are a family watching this, a participant watching this, or if you are an NDIS support coordinator, specialist support coordinator watching this, you will probably also find that if you have agencies looking after ventilation and tracheostomy at home and they’re working with support workers, God forbid, you will see that those support workers don’t stick around because they could be, with all due respect, they could be working in a supermarket for the same amount of money and not have someone’s lives in their hands. And that’s dangerous. And again, NDIS participants have died because of the NDIS not funding what’s clinically appropriateand also because of NDIS support coordinator not knowing about the advocacy, not knowing about the clinical gravity. So, we would really welcome you to reach out to us so we can educate you on the process, what evidence needs to be provided and so forth.
I hope that sums it up today.
Lastly, I was at the NDIS exhibition in Melbourne in Australia a few weeks ago. We had a booth there, a lot of people interested in what we do, and we spoke to a lot of NDIS support coordinators, which we do week-by-week anyway, but because of the exhibition, there were many NDIS support coordinators there. They had no idea that the NDIS is funding nursing care. They were sort of coming to us and saying, “Oh, well what’s an organization like Intensive Care at Home doing here?” Well, then we explained to them that the NDIS is actually funding nursing care for our clients. So, I hope that explains.
Also, if you get inquiries from ICU directly as an NDIS support coordinator and you don’t really know what to do, again, you should contact us. We are a group of intensive care nurses. We understand what needs to happen between a discharge from intensive care into the home care environment. We can make that safe. You should contact us if you don’t know what your next step might be if you’re having an inquiry from intensive care. So, I hope that helps to understand more about where the NDIS kicks in with nursing care, especially when it comes to ventilation, tracheostomy, non-invasive ventilation such as BIPAP (bilevel positive airway pressure), CPAP (continuous positive airway pressure), seizure management, also as well as home TPN.
Now, if you have a loved one in intensive care, again, and you want to go home, please contact us. Even if you are in the United States, you should contact us as well. We can help you in the United States, as well as in the U.K. But we are, at the moment, operating all around Australia and even if you can’t access the NDIS, you should contact us. We work with many other funding bodies as well.
And if you are an NDIS support coordinator, please contact us as well. If you have any questions about our service or if you know of someone that can benefit from our service, call us on one of the numbers on the top of our website or simply send us an email to [email protected].
Also, if you are a critical care nurse watching this with a minimum of two years ICU or pediatric ICU, or ED (Emergency Department) experience, you should contact us as well, because we have jobs in Sydney, Melbourne, and Brisbane, and in other areas in Australia as well, including rural and regional areas.
If you are an intensive care specialist in Australia, we are currently wanting to expand our medical team as well. So, for any ICU consultant watching this and has an interest in what we do, please contact us as well.
If you’re watching this and you are at home, or your loved one is at home on a ventilator with a tracheostomy, or any other medical complexities where you would benefit from an ICU nurse at home, please contact us as well.
We also have a membership for families in intensive care at intensivecaresupport.org. There, you have access to me and my team, 24 hours a day, and we answer all questions, intensive care and Intensive Care at Home related.
Also, if you need a NDIS nursing assessment or a medical record review for your loved one in intensive care or in hospital, please contact us as well. We can do either of that.
Subscribe to my YouTube channel for regular updates for families in intensive care and Intensive Care at Home, share the video with your friends and families or with your colleagues, click the like button, click the notification bell, and comment below what questions you have about the things that I talked about today, or any other comments are most welcome.
Thanks for watching.
This is Patrik Hutzel from intensivecareathome.com and I’ll talk to you in a few days.