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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 & 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 patients and medically complex patients at home, including home TPN.
In last week’s blog, I talked about,
INTENSIVE CARE AT HOME IS NOW PROVIDING LEVEL 2 AND LEVEL 3 NDIS SUPPORT COORDINATION! PART 2
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to share a podcast with Jessica Dale, our NDIS Support Coordinator.
Interview with Intensive Care at Home Specialist NDIS Support Coordinator, Jessica Dale
Patrik: Hello, and welcome to another intensivecareathome.com podcast. At Intensive Care at Home, we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies. We also provide tailor-made solutions for hospitals and intensive care units whilst providing quality care for our clients who are medically complex. It also includes services for Home TPN (total parenteral nutrition), also for BIPAP (bilevel positive airway pressure) and CPAP (continuous positive airway pressure) ventilation.
Now, in today’s blog, I want to talk about NDIS, Level 2 and Level 3 Support Coordination. To talk about today’s topic, I brought on our guest, Jessica Dale. Hi Jessica.
Jessica: Hi, Patrik. Thanks for having me.
Patrik: Thank you so much for coming on to the call. Just for our viewers, so we have just recently started our own NDIS Support Coordination Division, and we have now employed Jessica who’s an experienced NDIS Level 2 and Level 3 NDIS support coordinator.
Jessica, can you tell us a little bit more about your background and what you’ve done to this point?
Jessica: Absolutely. I started working in the NDIS space at the beginning of 2019. Started as a Level 2 Support Coordinator and very quickly showed a big interest in the more complex participants that were funded through the NDIS (National Disability Insurance Scheme). I really enjoyed the advocacy side of things and ensuring that participants were getting the right funding that met their needs.
At the beginning of 2020, I actually continued Support Coordination, but started working for a different provider where they were receiving a lot of referrals from participants who were stuck in hospital and didn’t have the right funding in their plan to be able to safely go home.
Right about that time is when COVID hit. I worked with the director there quite closely to develop a rapid hospital discharge program, specifically aimed at those participants who were stuck in hospital. We advocated for them and pushed the NDIS to make their decisions in a more prompt manner to ensure that we could start working alongside the care teams in the hospitals with those participants to ensure they could come out of hospital and moving to appropriate accommodation, whether it’s their homes or funded accommodation, and also, receive the care that was appropriately funded for them.
Patrik: That’s great. Some of our viewers who watch my videos regularly, I have talked about NDIS Support Coordination in other videos. What we have found over the years, and one of the main reasons why we are now starting to offer that service in-house is simply that not many NDIS support coordinators from our experience really are well-versed in the advocacy for our clientele.
Most of our clients have intensive care nursing needs. They can only really safely discharge from hospital by having 24-hour intensive care nursing. Most NDIS support coordinators don’t have enough working knowledge around the NDIS and around the advocacy to make that happen. We have some wonderful NDIS support coordinators in our network, and if you’re watching this, you know who you are.
We have just found that without building that skill in-house and having that skill in-house, that more and more clients will miss out on quite literally life-saving services and spend time in hospitals unnecessarily too long or go home with inadequate support.
If they go home with inadequate support, we have seen in NDIS participants die because of it, and it’s just simply not good enough. We are really here to bridge the gap between level two and level three NDIS support coordination and the nursing care that we are providing to make sure that (A), patients can leave the hospital safely. Also, making sure that hospitals feel confident in using our service to empty their bed blocks in hospital and in ICU. Obviously, clients and NDIS participants need to feel confident that they have the right support when they’re going home so they’re not bouncing back into hospital all the time.
Jessica, with your experience around rapid hospital discharges, can you talk more about the nursing side of things, what the NDIS funds? What the NDIS doesn’t fund? How to go about the gathering the evidence? I can speak about it from my experience, but you have more of an NDIS view. Maybe if you can talk about what evidence is required to get to 24-hour nursing care.
Jessica: Absolutely. At the end of the day, anytime you’re asking the NDIS for funding, you need to be able to provide relevant and appropriate evidence from an allied health professional or a treating practitioner or clinician. In terms of nursing funding, you will need to have a full nursing assessment completed by either a critical care nurse or a registered nurse.
Within that assessment, they will then develop a report that will outline every single support need that you require that has to be delivered by a nurse, and why it cannot be delivered by a support worker or a carer or a family member.
In that report, it’s really important that the person writing that includes the risks associated with not receiving that funding. If this participant was not to receive the funding and not to have this level of care in the community, what potentially could happen? Without giving that information to the NDIS, they will assume that the participant is capable and able to manage it at home without nursing support. It is really important that you have that evidence and it’s strong evidence.
From a support coordination perspective, it’s really important as well that anytime you’re asking for additional funding or an additional support to a participant’s plan, that you back up that evidence with a supporting letter from yourself to talk about the social and emotional needs of the participant as well. The additional support that you are also required to give to that participant, should the funding not be approved.
Patrik: Look, this is pretty much, we have done so many nursing assessments for the NDIS over the years, really highlighting that when it comes to mechanical ventilation and tracheostomy, even if someone is not ventilated but has a tracheostomy, that this is an intensive care nursing skill, not a support worker skill or not even a general registered nurse skill. Furthermore, even when it comes to noninvasive ventilation such as BIPAP, CPAP, if it’s for a clinical condition, even that, is not the skill of a general registered nurse. Again, if those patients are in hospital, they’re usually in intensive care.
Also, another aspect of our care deliveries, often NDIS participants that have neurological conditions such as stroke, seizures. They’re often on benzodiazepines or on opiates. Again, which is not a support worker skill, it’s the skill of a registered nurse. Other clients that we look after is, for example, home TPN. For anyone wondering what TPN is, TPN stands for total parenteral nutrition. In short, it’s intravenous nutrition for patients, often with gastroparesis or any other digestive issues. Also, sometimes for end-stage gastric cancer, where people have no more ability to take in oral nutrition or fluids, for that matter.
Other client conditions that we are looking after in the community, cerebral palsy, Rett syndrome, motor neurone disease, Guillain-Barre syndrome, spinal muscular atrophy, Duchenne syndrome, acquired brain injuries, traumatic brain injuries, and of course, high spinal injuries, C1 to C4. Most of them all require invasive or a non-invasive ventilation. A large proportion of our clients have a tracheostomy as well.
Also, Jessica, we also quickly want to address other NDIS support coordinators. We are also willing to help other NDIS support coordinators in their quest to get the right level of funding for their NDIS participants. It’s not that we’re here to say we can serve every client. We quite simply can’t. It’s a case of doing what’s right for the participants and get them the funding they need. Do you want to say anything about how we can help other NDIS support coordinators?
Jessica: Absolutely. I think if you’re an NDIS support coordinator, you would be very well aware that this space is ever-changing and it’s always a very steep learning curve. Your participants are thrown into situations and they come to you for support, and you may not have direct or firsthand experience navigating some of the challenges that they’re faced with.
My biggest piece of advice is, don’t stop with any education. Keep reading, keep trying to build your skillset and invest in further education in regards to all types of support coordination.
If you do have a participant that’s stuck in hospital and they’re needing your help to discharge, I would highly recommend you get in touch with us because we’d certainly be able to support you with that. It is a very niche space, and unless you’ve had a client in that situation, you often don’t know what you’re doing. I know when I had my very first hospital discharge client, I was deep in the water and I had to swim my way out of it. But from doing it over and over again and developing a really solid process, we were able to work out a way to do it very quickly and very successfully for participants.
Patrik: Well, on that note, when we’re talking about rapid hospital discharges, we also want to address hospital employees starting right from the top, whether it’s hospital executives, hospital CEOs, hospital directors of nursing, all the way down to an intensive care level. Doctors, nurses, discharge planners, also bed managers in hospital. All of them would know that there are bed blocks either in ICU or on a respiratory ward often or on a general medical ward, patients sitting there on a ventilator with a tracheostomy.
Hospitals often don’t have any idea, (A), what services are available in the community? If they do know there is a service, they often don’t know how to obtain the right level of funding. This podcast is also about educating hospitals, what to do next.
Jessica, what would you advise if there’s a participant in hospital and he’s not even on an NDIS plan yet? What would you advise are the first steps, either from a hospital point of view or from a participant’s point of view?
Jessica: Absolutely. Try and get in touch with a social worker at the hospital and get that access form filled out and submitted to the NDIS as soon as you can. The evidence required for your initial application doesn’t need to be submitted at the same time as your access form. Definitely, make sure you’re having that conversation with whether it’s your OT in the hospital, your physio, your treating practitioner, and the social worker, and let them know that you feel that you would like to access NDIS funding. Let them know that you’ll need a multidisciplinary functional capacity assessment completed.
That’s where all the whole Allied Health team will all complete a part of an assessment. It will be put all into one big report, and that will form as the basis of your application for funding. What that’s going to do is give the NDIS a really good picture of what your support needs are, what you can do, what you can’t do, what the treating team’s recommendations are for you to be able to be safe in the community once you’re discharged. That way, you’re going to get a package or a plan from the NDIS that accurately represents what your support needs are.
Patrik: What would you recommend to a participant that is in the community, which we have seen over the years. What we’ve seen, for example, is that there might be someone with a tracheostomy and/or a ventilator in the community looked after by support workers. They either go back to hospital all the time or because clearly, this is an intensive care nursing skill, not a support worker skill, either that they go back to hospital all the time or see the support workers drop off those rosters because they realize they have someone’s life in their hand. It’s completely outside of their skillset. Then the clients realize, “Oh, this is no longer safe.” They need an urgent plan review. NDIS support coordinators don’t know how to do that or they’re scared of doing it. I’ve seen enough of that now over the years. What’s your advice if a participant is in a situation like that?
Jessica: Well, my biggest piece of advice to a support coordinator is you work for the participant. If the participant needs something and their plan is not reflecting that, it’s up to you to advocate for them. Contact the NDIS, send them an email and follow up with a phone call and say, “I need to speak to a planner or a delegate for this participant. They are at risk of losing all of their supports. They’re going to decline very rapidly if they don’t receive these supports, and we need actions straight away.” The sooner you get in contact with them, the sooner they’re aware and they do have an obligation to respond to that initial request within seven days.
Patrik: That’s great. Just an observation that I’ve had over the years where we sometimes have inquiries to our service from NDIS support coordinator saying, “Can you look after this participant on a ventilator with the tracheostomy or not? Ventilated, has a tracheostomy?” Then we say, “Yes, we can do that because that’s all we do and that’s bread and butter for us.” Then we hear from an NDIS support coordinator, but the NDIS only pays for a support worker. My response to that is, that’s a death sentence. I have evidence to back up what I’m saying here, that patients in the community have died on ventilators with tracheostomy because they were looked after by support workers, not by intensive care nurses. It’s like flying an airplane with a cabin crew and not with a pilot. That’s the comparison that I’d like to make.
All of our clients that we’ve looked after now for over 10 years all have the funding for 24-hour nursing care. If you are a participant, a family member, an NDIS support coordinator watching this, it is all there. It just needs to be backed up by the right evidence. The same if you are a hospital executive for hospital health professional watching this. It’s all there, it just needs to be backed up with a right level of evidence, and the NDIS, or potentially other funding bodies will fund. Whether it’s the TAC (Transport Accident Commission) in Victoria, whether it’s iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), whether it’s the DVA, the Department of Veteran Affairs.
I found now over the years, the advocacy process is always almost the same, what needs to be given to the funding bodies. It’s not unique to the NDIS actually. However, the NDIS is one of those organizations at least who acknowledges that there needs to be an NDIS support coordinator to move it in the right direction.
Jessica: Yeah, absolutely. It really always comes down to the evidence. If you’re a hospital executive or a staff member at the hospital and you feel that your team would benefit from any training on completing those assessments and putting together those reports and what to include in them, get in touch with us because we’d be happy to provide training and guidance on what the NDIS looks for and how to write in the NDIS language.
Patrik: Yes, that is very important, to write in the NDIS language. On that note as well, we are also providing NDIS nursing assessments. If you need an NDIS nursing assessment, you can reach out to us as well.
Another thing, Jessica, that we haven’t mentioned yet, as much as we have focused on this call on NDIS support coordination for ventilation, tracheostomy, anyone with high medical needs, we are also providing NDIS Support Coordination for other participants too. Do you want to talk about that quickly?
Jessica: Yeah, absolutely. You may not be in the hospital discharge space or the medically complex space, but you may have an NDIS plan. You may have just received one and you have no idea where to start. What we do with our support coordination space is we actually sit down with participants for an initial meeting and we go through what the participant’s goals are. Break down the funding for them. Talk them through what services and supports they can access with that funding, and give them the opportunity to go away and have a think about whether we might be the right fit for them. If we are and you sign a service agreement, then what we’ll do is we’ll start working on a planning tool, which essentially breaks down your funding for you. Gives you a minimum of three options of all of your supports that you’ve requested and the supports that you need to achieve your goals.
What we’ll do is we’ll sit with you once a quarter and go through those goals again and see how you’re tracking with everything once we’ve got those supports implemented.
If things aren’t working, we’re there to support you to help find another provider or rectify things with your current provider. Once you get to the end of your plan period, what we’ll do is again. We’ll sit down and go through your goals. Have you achieved them? Have you not? If you have achieved them, do you have new goals that you would like to achieve? If you haven’t achieved them, what have been the barriers? We’ll start preparing you for your next plan review meeting to ensure that your funding for the next period will either be the same as what you had previously if your circumstances have not changed.
If they have changed and you need less funding, then obviously, that’s pretty self-explanatory. We’ll let the NDIS know. If you have declined or you need additional funding, we will be there to help you advocate to ensure that your plan will reflect those needs. Pretty much, we are open to supporting all types of participants, not just medically complex. Psychosocial participants, people on the autism spectrum, intellectual disability, physical disability, whatever it may be.
I also have given with I guess my hospital discharge planning extensive experience with SDA and SIL applications. If you have any accommodation challenges that you’re facing at the moment within that NDIS space, we are very well-equipped to help you with those.
Patrik: That’s great, Jessica. Thank you so much for summing this up for our viewers. I think we’ve covered pretty much everything that we wanted to cover in this short podcast. Thank you very much, Jessica, for coming onto the call.
If you have a family member in intensive care or in the hospital wanting to go home and they’re stuck in the hospital, they’re ventilated, they have a tracheostomy, they may not be ventilated but have a tracheostomy, they may not have a tracheostomy but are non-invasively ventilated via BIPAP, CPAP, or if you’re stuck in hospital with TPN needs, we can provide home TPN. Then I strongly encourage you to reach out to us whether you have or you haven’t an NDIS plan as you’ve heard. Now, we can help you with the funding side of things.
I just want to make one more final comment. The funding from our perspective has never been the issue. The issue has been, quite frankly, the NDIS support coordinators. They have been the issue. I think that by bringing you on board, Jessica, that we can speed up the process of getting our clients that inquire about our service home. It really comes down to a good NDIS support coordinator. They will make all the difference in the world. Funding has never been the issue with the right advocacy really. Word of encouragement here for everyone that feels like they’re stuck in a hospital, they don’t know where to go next. I can only encourage you to reach out to us.
Now, if you are an NDIS support coordinator or watching this, again, we strongly encourage you to reach out to us as well for help. Or if you have a participant that needs 24-hour nursing care or other nursing care, please reach out to us.
If you are a critical care nurse and you know of patients in ICU that are stuck there, you know where to reach us. Also, if you are a critical care nurse and you’re looking for a career change, please reach out to us. We currently offer jobs for critical care nurses with a minimum of two years critical care nursing experience in Sydney, Melbourne, and Brisbane.
If you are an intensive care consultant, we are currently also expanding our medical team. If you have a patient in intensive care that can benefit from our service, please reach out the same. If you’re a hospital executive and you know about your bottlenecks in hospitals and wanting to improve the lives of your patients, please reach out to us as well.
Now, thanks again, Jessica, for coming onto the call.
If you like my videos, please subscribe to my YouTube channel for regular updates for families in intensive care and Intensive Care at Home, like the video, click the notification bell, share the video with your friends and families, and comment below if you have any questions or whether you want me to cover another topic.
Thanks for watching and thanks Jessica again for coming onto the call.
Jessica: Thanks for having me, Patrik.
Patrik: Thank you.
Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected]. That’s Patrik, just with a K at the end.
Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.
Intensive care at home Case studies
And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.
And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Sunbury, Bendigo, Mornington Peninsula, Bittern, Patterson Lakes, Frankston area, South Gippsland, Drouin, Warragul, Trida, Trafalgar and Moe as well as Wollongong in New South Wales.
www.intensivecareathome.com/careers
So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran Affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.
Thank you for watching this video and thank you for tuning into this week’s blog.
This is Patrik from Intensive Care at Home, and I’ll see you again next week in another update.