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INTERVIEW WITH INTENSIVE CARE AT HOME SPECIALIST NDIS SUPPORT COORDINATOR, AMANDA RICHES
Patrik: 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 care for long-term ventilated adults and children with tracheostomies and medically complex patients at home, including Home TPN (total parenteral nutrition), Home BIPAP (bilevel positive airway pressure), Home CPAP (continuous positive airway pressure), as well as potassium, magnesium infusions, palliative care, and IV antibiotics.
In today’s blog post, I want to share a podcast with Amanda Riches, our Specialist NDIS (National Disability Insurance Scheme) Support Coordinator.
Hi, Amanda.
Amanda: Hi, Patrik.
Patrik: Nice to see you again and thank you for coming onto the call.
Amanda: No worries. Thank you very much for having me.
Patrik: That’s great. So today, I really want to talk about Level 2 and Level 3 NDIS support coordination, and that’s why we brought Amanda on. Amanda is a very experienced Level 2 and Level 3 NDIS Support Coordinator. Obviously, it goes without saying that we are an NDIS approved or accredited service provider here in Australia.
Amanda, tell us a little bit about your experience and why you joined Intensive Care at Home and some of the things we want to be working on with you.
Amanda: Yeah, so I have been extremely fortunate to work in the disability sector for almost 30 years. I absolutely love what I do and really enjoy assisting people. So, I’ve got a lot of experience through from behaviors of concern all the way through to quite complex and spinal cord injury participants and assisting them to get the right outcomes.
So, what brings me to Intensive Care at Home? So, Patrik and I started having a conversation and figured we were all pretty much on the same page. We had the same goals that aligned quite well and just want the best for the people that we support with the right training and education behind us as well to be able to support people properly.
Patrik: I think, Amanda, one thing obviously, we are a nursing service first and foremost, and we have been dealing with NDIS Support Coordinators for many years. But one thing that led us to look for our own NDIS Support Coordinator, something that you and I discussed at length, which is simply that the quality of NDIS Support Coordinators across the board is not really suited to what our clients need who are very vulnerable, obviously with coming most of the time from ICU units on life support.
Many NDIS support coordinators, with all due respect, they don’t really know what to advocate for these vulnerable clients. Obviously, you have worked in this space for much longer than I have when it comes to support coordination, but I think you have seen the pitfalls for clients and more importantly the gaps. You’ve identified the gaps, we’ve identified the gaps, which is why we think this is such a good match going forward.
What have you identified in terms of gaps in this space?
Amanda: I guess from a support coordination point of view, it’s not having the right supports in place for when people, like in our example, if people are leaving hospital and they need to liaise with the family and around supports that might be required, it’s the first NDIS plan for a lot of people. So, a lot get missed and then they end up being exited from hospital with great big gaps in their NDIS plan, which isn’t ideal. Then, you’re ending up having to put in reviews and trying to get all that additional funding extra on top of that, which really puts the families at a great disadvantage because they aren’t nursing care themselves, which is just such a shame and care burnout happens very quickly because of that. So, that’s one of the main gaps I’ve noticed recently and over the time that I’ve done support coordination.
Patrik: I mean, most of our clients have intensive care nursing needs. They can only really safely discharge from hospital by having 24-hour intensive care nurses at home. From my experience, Amanda, and most of our other nurses too, most NDIS Support Coordinators don’t have enough working knowledge around the NDIS and what the NDIS is actually funding with the right level of evidence, advocacy, documents that need to go to the NDIS, which from our perspective is of course a nursing assessment, a specialist nursing assessment, an OT report, often a physio report, sometimes a doctor’s letter.
Can you talk about advocacy and your working knowledge around the NDIS, which I think is next level, which is what I think we need for our clients? Can you talk about that?
Amanda: Yeah, definitely. So, I guess my main role is to identify any of the complex barriers for people, and then I work with the team at Intensive Care at Home and liaise with the nursing staff around what we need to build for that person. Sorry, Patrik, do you want to repeat that question?
Patrik: Yeah, no, sure, for sure. So, your working knowledge around the NDIS I think is really very good and something that I just haven’t seen with other NDIS Support Coordinators, because you’ve clearly identified, when you and I first interviewed, you clearly identified to me, okay, these are the steps we need to take to go from hospital discharge to 24-hour nursing care, which are certainly the steps that we had identified over the years. However, a lot of NDIS Support Coordinators, I believe, thought it’s too much hassle, number one, (B) too much work, and number three, they didn’t really want to negotiate or deal with the NDIS.
I also think what I’ve observed from you is you seem to have a good working knowledge around NDIS plans, what needs to be in there, how you can sometimes look at different aspects of the plan, how you can shift potentially finances around. It’s just something that I haven’t seen before where there seems to be a good working knowledge around how to work the system, so to speak.
Amanda: Yeah. I guess for me, it’s not my life. So, if a participant is requesting a particular thing out of their NDIS plan, thankfully there’s some flexibility within those plans. I will research the ways that we can use that funding to the best of the ability to be able to support the participants. So, I will do the research and try and gather the information around ways to manipulate the funding, I suppose, to best support the person with doing research and staying within those guidelines, but also meeting the participants’ needs. So, that really nice fine balance between the NDIS and the participants.
Patrik: The other thing, Amanda, that we’ve identified over the years, and I know you’ve seen it within the last few months that you’ve worked with us, unfortunately, I’m not exaggerating when I’m saying that if the clients that are on ventilation tracheostomy, if they don’t get the 24-hour nursing care, they either have died in the past at home because the nurses weren’t around, weren’t funded, or unfortunately, it’s a ticking time bomb. One thing that I think we’ve done over the years very well overall, at least with the Support Coordinators that were willing to listen, is to get this into the NDIS space and saying, “Hey, look guys, here’s the evidence why this participant needs twenty-four-hour nursing care with intensive care nurses.” It can’t just be a support worker. It can’t even be a general registered nurse without intensive care nursing experience.
The number of Support Coordinators over the years that I’ve seen who were even baffled that the NDIS would even fund a nurse that didn’t even know that it’s part of the guidelines or the scheme, whatever the technical term is, where I believe us as a nursing service who has the specialized knowledge around what nursing care client needs and you having the working knowledge of the NDIS guidelines, what evidence needs to be provided, I believe really will work very well for our clients. We’ve already seen it in the last couple of months how well it works when both worlds align, which is the working knowledge of the NDIS and our knowledge about the specialist skills that a participant needs, and which is really what we want to achieve going forward to make our clients’ life better.
Amanda: So, one of the things that the NDIS really likes to do, and it’s called a delegated model of care, which means that a nurse oversees the participant and oversees the staff and puts in training in place for the support workers. However, what we’ve seen a lot of is that support workers don’t technically need any formal qualifications to be support workers. In a lot of cases, they’re offering a Certificate 3 or a Certificate 4, and then allowing people to be working with people who have tracheostomy, are looking at PEG (Percutaneous Endoscopic Gastrostomy) feeds, that type of thing. They’re training every 3 months if they’re lucky with either a hospital or an external provider, which that’s not the level of support that our participants especially need because of the complexity and how quickly that our participants’ health needs can change.
I advocate very, very heavily for 24-hour nursing care and offering that person that choice around what their care actually looks like. This is a life-changing event for them and taking that choice and control away from them when they’ve lost everything, it’s absolutely horrific. The mental health decline of a lot of the people because of this is quite concerning.
Patrik: Absolutely. But there’s more to that, Amanda. You and I have spoken more about what the NDIS wants with the delegated model of care, and as you know, we’ve done some research around that.
Amanda: Absolutely.
Patrik: That we will go public with at some point. But the bottom line is two things in regards to that. Number one, registered nurses are not allowed as part of our AHPRA (Australian Health Practitioner Regulation Agency) and nursing and midwifery board code of conduct and code of ethics. We are not even allowed to delegate care to a disability support worker for ventilation, tracheostomy. Like I said, we’re not even allowed to delegate it to a general registered nurse. The NDIS says this can be delegated to a disability support worker. With all respect, that’s like flying the airplane with a cabin crew and not with a pilot. That’s number one.
Number two is internally, but also externally now, we know there was a court case in 2022 where the NDIS challenged the federal court about a case where the AAT (Administrative Appeals Tribunal), the NDIS tribunal gave nursing care to an NDIS participant. The NDIS didn’t want to do that, and they took it to the federal court, and the federal court decided in favor of the NDIS participant saying, “No, you need nursing care.” This wasn’t around ventilation tracheostomy. This was around PEG tubes, it was around pressure area care, it was around diabetes management and insulin management. So that wasn’t even high end, which is what we are looking at in the community, high acuity in the community.
So, when it comes to entry level of nursing care, if that needs to be provided by registered nurses, how can high-end nursing care in the community when it comes to ventilation, tracheostomy, TPN (Total Parenteral Nutrition) and all the rest of it, how can that be delegated to a support worker? None of it makes sense.
Amanda: I think on the other side of that as well, Patrik, is that specialist support coordination is specialist support coordination for a reason, and the participants that we are supporting do have those complex needs. So, you would have a Support Coordinator that understands those needs.
So, we are very lucky with Intensive Care at Home that I may not have a nursing qualified background, however I do have nurses that I liaise with quite frequently and add to my knowledge base that I know and understand what people need. If I don’t, I have a fantastic team that I can reach out to and say, “This is the case, can you help us out with it?”
So, it’s not a Level 2 Support Coordinator, or Level 1 Support Coordinator even that’s working with the people that we support who do have such complex barriers and complex support needs. So again, you wouldn’t go and ask the flight crew to fly the plane. So, specialist support coordination is really, really important when we’re dealing with the people because we need that knowledge and background of all of the support to minimize harm within that person’s life, and so they can return home.
Patrik: Absolutely. Absolutely. Another challenge, Amanda, that we’ve seen over the years is there’s two challenges we’ve seen over the years. One challenge is families contacting us saying, “Hey, my family member has been in ICU now for 6 months. How can we get them home? We haven’t even spoken to the NDIS yet.” So, one challenge that we’ve seen is how to even get on the NDIS. That’s one challenge we’ve seen. Could you help with that? If we had an inquiry in saying, “Hey, look, how do we get on the NDIS?” Is that something we can help participants with?
Amanda: Absolutely. It’s something that I’ve done quite a lot of and gathering that information and assisting people with access requests. It’s really important that all of the documentation that people are gathering all aligns to support exactly what supports they’re going to need. So, if you’ve got three people involved in doing allied health reports, so physio, occupational therapists, and the exercise physiologists, they all need to be basically repeating each other and saying the same thing in all of the documentation to reinforce what you need. But sometimes that’s just too difficult for a lot of our families, and that’s where we can step in and say, “Hey, that’s okay. We will gather the information for you and then we will liaise with that person around what that needs to look like going forward.”
Patrik: Great, great. Because I think when families are in such a vulnerable situation and they might hear NDIS and they haven’t got any experience with it, it’s so overwhelming for them, so daunting to take those first steps. It’s important for anyone watching this or listening to this or reading this, there is help at hand. You just need to reach out to us so that we can walk you through those steps.
Now, Amanda, another thing that I’ve picked up on over the years, and I know we’ve seen it now in the last couple of months, even since you’ve been with us, and it’s been so frustrating for me over the years when we didn’t have our own NDIS Support Coordinator. So, I have Support Coordinators sometimes reaching out to us saying, “Hey, I’ve got a patient in ICU. They are on a ventilator. They’re with the tracheostomy. They’re ready to go home. Can you provide 24-hour support workers because the NDIS is funding 24-hour support workers?” And I say, that’s a death sentence. Someone listening to this might go, “What are you talking about here?” Well, I can tell you what I’m talking about here, like I’ve been highlighting before, when it comes to ventilation tracheostomy, even BIPAP, CPAP ventilation without a tracheostomy, when it comes to tracheostomy without ventilation, they are intensive care nursing skills. They’re not support worker skills. They’re not even a registered nurse skills without intensive care experience.
So, if the NDIS is funding 24-hour support workers, again, it’s like flying the airplane with a cabin crew and not with a pilot. It’s almost like a death sentence. We have seen patients die, unfortunately, in the community because of lack of funding. Some of the responses that I had from NDIS Support Coordinator are, “Well, that’s all the NDIS funds.” And I say, “No, that’s all the NDIS funds you because we wouldn’t be in business, and we wouldn’t be having all these case studies if the NDIS wasn’t funding 24-hour nursing care.”
What’s your experience with that and how can we help families to challenge a situation like that? Because I know there’s families out there who are in that situation, how can we help them challenge them?
Amanda: A lot of the time, it’s about that advocacy. As much as we’re told as support coordinators, we are not advocates. We are actually advocates. We speak up for the people that we are supporting and express. We gather that information on behalf of the participant to prove why you need nursing care. So, we will get clinical nursing assessments and OTs and all of the people that we need to possibly get to prove that you require that level of support. It can be very tedious trying to gather that information and making sure all the reports are in the right terminology and things like that for when it comes to NDIS, because they do like their terminologies to be used a lot of the time. It’s not my life. This is what people need in their lives. So, I will stand up for what they want in their lives every single time. It’s not for me to judge. So, that’s the approach I generally take when it comes to this sort of thing. It’s really important to advocate for people’s wants and needs.
Patrik: Yeah. Yeah, absolutely. I think that’s what it’s all about, really, the NDIS. The NDIS is setting a framework, but we’ve certainly seen the gaps within those frameworks, and it’s all about closing those gaps and getting the people what they want in those situations, but also what they need on a clinical level. As much as the NDIS is a disability funding scheme, from my perspective, you can’t really separate disability from health or the other way around. It all goes hand in hand, and you can’t separate one from the other. It needs to go hand in hand so that the clients can have the best possible quality of life.
Amanda: Definitely. I guess to a degree, with a lot of our participants, if I am not able to find or the NDIS plan won’t fund for a particular thing, and we’re still in the middle of trying to push back on the NDIS and gathering that information, one of the roles of a Specialist Support Coordinator is to find if there is any other agencies or any other funding bodies that will assist in trying to close that gap. So, sometimes, it’s in the realm of medical rather than in the realm of disability. It should be under the umbrella of NDIS, and I get that there is medical component to most disabilities, and we just need to be really aware that yes, there are crossovers, however, they usually come in under the same umbrella.
Patrik: I think another one of your strengths that I’ve seen since you’ve worked with us is you have a good network, which is probably a result of your decades in the disability sector, which is also one of the strengths that we can help our clients to leverage what the NDIS plans because it is really important that you have a network of OTs, physiotherapists, but also having a network of other NDIS Support Coordinators. I mean, it’s all about networking. It’s all about helping each other, really. Also knowing where other providers are, who’s a good provider in the space, who’s not such a good provider. It’s all very important knowledge in this space that you’re bringing to us, which I have found to be very, very valuable since you’ve worked with us.
Amanda: Not everyone is going to have the same fit either. We are a very niche and very specific service, and we service very specific type of people. So, if we have somebody who has some mental health complexities or something along those lines, then we would tend to refer out to another good coordinator or coordination group to ensure that, that person is getting the best from that area. We aren’t the best at that. We’re the best at helping people get home and nursing care services, and that’s what we do really well. So, we need to utilize that network as much as possible. We don’t gatekeep participants either, so if I can’t assist that person, we’re straight up very honest, “Hey, we won’t be able to assist you, but here’s some other avenues that you can pursue if you want to. Or we can help you get in contact with people as well.”
Patrik: Yes, absolutely. I think you’re making a very valid point here, Amanda, that most of the videos that I’m making are really targeted to a family who has the need of nursing care. But what is important here is obviously we’re bringing both worlds together here, which is the nursing side and the NDIS support coordination side. Like you said, we are so specialized, ventilation, tracheostomy, non-invasive ventilation such as BIPAP, CPAP, TPN, we’re doing home TPN, we’re also doing home IV potassium, home IV magnesium infusions. We’re doing fair bit of palliative care as well. We need the insights from yourself, from the NDIS Support Coordinator to really help our clients faster to go home from hospital, or if they are at home already, to stay at home predictably.
The other thing that I would like to mention here, we are also, or you Amanda, you’re also providing TAC (Transport Accident Commission) care coordination if need be. Someone might be watching this who’s falling under the TAC. So, we’re also providing TAC support coordination. We’re also providing iCare, new South Wales support coordination or case management, whatever the right technical term is. So, if you need help with that, we’re also here for you.
Amanda: I’ve got a lot of experience with remote support coordination as well. So, I’ve been able to offer support coordination to people who are in quite remote and rural areas as well as across Australia. So, Queensland, New South Wales, South Australia have a really good understanding of a lot of these places. I have visited a lot of these places as well. So, it’s really good collective knowledge around the best supports that are in that area as well. Plus, we have an amazing clinical nursing team within all of those areas that I’m able to again, chat with and see what have been stick out support providers in those areas. So, whether it’s occupational therapy that might be a little bit more neuro-specific, or a physio that might be a little bit more of a respiratory physio rather than just a regular physio. So, we’re very great, we’ve got a really great network here, and it’s really wonderfully supported for our participants. And that the brains trust of Intensive Care at Home is quite amazing.
Patrik: Yeah, no, thank you. Thanks, Amanda. That also leads me to, someone might be watching this and wondering, “Oh, where do you operate?” Well, we are Melbourne-based, but we are really going all around Australia. We are not location dependent. The NDIS is obviously a national funding scheme, and we are definitely not location dependent, we have provided service in regional and rural areas as well. We are actually providing services in regional and rural areas as well. So, no matter where you are in the country, you are more than welcome to reach out to us at intensivecareathome.com by calling us on one of the numbers on the top of our website or send us an email to [email protected].
Amanda, before we wrap this up, do you have any other final thoughts?
Amanda: I think it’s best to approach an organization, ask some questions, do your research around the organization before going. It’s okay to ask for an initial meeting before signing on with the company, make sure they’re a good fit and that you’re going to get along well with the person who’s going to be supporting you. I think they’re probably the take homes for a lot of people that are looking for support. Don’t just settle for whoever you’re given.
Patrik: Yeah, I agree with that. I agree with that. Amanda, yes, one thing that I forgot to mention, which I think is also a very important aspect of the work that you and I do, but I think it’s more important for you even, our clients are obviously very complex, they come with conditions such as motor neuron disease, cerebral palsy, Rett syndrome, they might come with acquired brain injuries, they might be quadriplegic, stroke, might have a stroke, might have myasthenia gravis. There’s a large number of conditions that we are looking after at home. It’s also very important to know how to get in front of an NDIS complex planner. Is that correct, that whenever you get on the NDIS scheme, it’s important that, especially in the world that we are living in, that you’re talking to a complex NDIS planner? Is that the right technical term?
Amanda: Yeah, I think the easiest way to remember is if your condition is being classified as complex, then you need support on the other end that are going to support that. So complex NDIS planner, there is an entire complex team that’s dedicated just to participants who have this higher level of care, and they have a better understanding of the people who do require that more complex care and a more complex NDIS funded plans. So yeah, you’re exactly right, Patrik, there is an entire team that is dedicated to that.
Patrik: I think what it really comes down to, Amanda, is because our clients are so complex, so vulnerable, and they need so much help, you really need to validate the right team behind you. That starts with NDIS support coordination, who can get you what you need, continue with OT physiotherapy, the nursing side of things, but also on the other side with the NDIS, the right planner.
Amanda: Definitely. I think it’s a bit of a fine balance. There is the coordinator tends to be the balance between the NDIS and also the participant. When it comes to referral processes and things like that, a physio just isn’t a physio, especially for complex needs. There’s many different types of physio, and it just depends on the person. So learning all of that information after you’ve had a serious injury or coming onto the NDIS, I think it’s really important, especially for your first few plans, at the very least, is to have NDIS support coordination and also that Level 3 support coordination, not the Level 1 and not Level 2, because there is a lot more complexity to the person. You need Level 3 coordination.
Patrik: When some families might be watching this and they’re thinking, “Oh, I’m not even on the NDIS yet, but we can help the families to go to the NDIS.
Amanda: Absolutely.
Patrik: Get the application and then also get the right level of NDIS support coordination, which in most of our cases would be a Level 3.
Amanda: Absolutely. Absolutely. We will support families in this. Unfortunately, one of the other things that comes along with this is a lot of administration tasks. So, the role of a Support Coordinator can actually alleviate some of that administration stuff, whether that’s sitting on the phone to the NDIS for you, or putting through documents to the NDIS for changes of circumstances or plan reviews. So, that is part of the role of the Support Coordinator as well.
Patrik: That’s great. That’s great. Well, Amanda, thank you so much for coming on to the interview, and thank you very much for joining us at Intensive Care at Home.
Amanda: Thank you, Patrik.
Patrik: I think we’re very lucky to have you. Your advocacy for the clients that you’ve worked with so far has been outstanding, and we want to see more of that.
If you are in need, if you’re watching this, you have a loved one in ICU or you have someone at home that doesn’t have the support that they need, doesn’t have the team they need, I encourage you to reach out to us once again at intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].
We are operating all around Australia in all major capital cities and regional and rural areas. We are a TAC (Transport Accident Commission) approved service provider in Victoria, WorkSafe in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), DVA (Department of Veteran Affairs) all around Australia. We have received funding through public hospitals, departments of health, as well as private health insurances. So, it doesn’t necessarily have to be the NDIS, but currently most funding is coming through the NDIS (National Disability Insurance Scheme).
We are also currently looking for critical care nurses in Victoria, in Sydney, and in Brisbane, mainly Melbourne, but also country Victoria such as Bendigo and the Warragul area, as well as Albury, Wodonga.
If you are an intensive care specialist and you’re watching this, you might have patients in your ICU, but we are also wanting to expand our medical team. If you’re interested in collaborating with us, we want to hear from you as well.
You might be a hospital executive watching this, and you might have problems with your bed blocks in hospital, mainly in ICU, ED, respiratory wards. You’re welcome to reach out to us as well because we know we can help you eliminate your bed blocks.
Lastly, if you like my video, subscribe to my YouTube channel, share the video with your friends and families, comment below what you want to see next, what questions or insights you have, and click the like button, click the notification bell.
Thanks again Amanda, and I’ll talk to you soon.
Amanda: No worries. Thank you, Patrik.
Patrik: Thank you.