Get Real: Talking mental health & disability

Why NDIS high intensity supports are essential for participants with challenging behaviours

The team at ermha365 Season 5 Episode 98

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Participants, families and providers across Australia are trying to make sense of what the latest NDIS Price Guide means for them – and this is in addition to the changes slated in the Federal Government’s Getting the NDIS Back on Track Bill. 

ermha365 is right behind the #4aBetterNDIS campaign that’s in response to the latest NDIS Pricing Review. 
This campaign is a joint effort of peak bodies – National Disability Services, Disability Intermediaries Australia, CEO Collab and Allied Health Professions Australia and their member organisations.

There are changes that particularly impact the NDIS support and services that the organisations of each of these Peak Bodies provide.   

For us at ermha365 the biggest impact is high intensity supports for people with complex and challenging behaviours being downgraded to standard supports category.  

This is a reduction in the funding available and a downgrading in recognition of the skill and experience of the workers in this area. 

For this special episode we are going to hear from ermha365 CEO Karenza Louis-Smith and Melbourne mother Anne, whose adult son James is supported by ermha365 as part of his NDIS plan. He has a diagnosis of schizophrenia and experiences other psychosocial conditions. James relies on daily, intensive support for daily living, including for complex and challenging behaviours.

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ermha365 provides mental health and disability support for people in Victoria and the Northern Territory. Find out more about our services at our website.

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ermha team:

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ermha team:

Welcome to Get Real talking mental health and disability brought to you by the team at Irma 365.

Anne:

Join our hosts Emily Webb and Corenza.

ermha team:

Louis-Smith, as we have frank and fearless conversations with special guests about all things mental health and complexity. We recognise people with lived experience of mental ill health and disability, as well as their families and carers. We recognise their strength, courage and unique perspective as a vital contribution to this podcast so we can learn, grow and unique perspective as a vital contribution to this podcast so we can learn, grow and achieve better outcomes together.

Anne:

When he first came to Irma, he wouldn't go out of the door of his house. Now he's out every day, which is amazing. We would hate to go back to that time again, where he was left unsupported and being looked after by people who don't really understand him or how to support him.

Speaker 5:

Welcome to Get Real talking. Mental health and disability. I'm Emily Webb. Participants, families and providers across Australia are trying to make sense of what the latest NDIS price guide means for them, and this is in addition to the changes slated in the federal government's Getting the NDIS Back on Track bill. Getting the NDIS back on track bill Irma 365 is right behind the For a Better NDIS campaign.

Speaker 5:

That's in response to the latest NDIS pricing review, which came out at the end of June this year. This campaign is a joint effort of peak bodies the National Disability Services, disability Intermediaries Australia, ceo, colab and Allied Health Professions Australia and all their member organisations. There are changes that particularly impact the NDI support and services that the organisations of each of these peak bodies provide. For us at IRMA 365, the biggest impact is high intensity supports for people with complex and challenging behaviours has been downgraded to standard supports category. This is a reduction in the funding available and a downgrading in recognition of the skill and experience of the workers in this particular area. Workers in this particular area IRMA 365 CEO Carenza Louis-Smith explains more about why providers and participants are so concerned.

Karenza Louis-Smith:

Providers like IRMA, who specialise in supporting the most complex and vulnerable participants, are kind of being pushed to the limit, and we're really worried that participants are going to be failed, distressed and disadvantaged and not supported. I guess, in the vision of the NDIS and if you think about what kind of NDIS do we want we want a safe, quality driven NDIS, and that's important for everybody. I think what we're really worried about is these are participants in the scheme, emily, who had high intensity supports. They've had them since 2018 and suddenly their plans have been slashed and cut overnight and their supports have been reduced to standard. So what does that mean? It's the difference between having a specialist worker who understands the participants needs and replacing them with a less skilled person, and expecting a less skilled person to be able to support people who have got really complex and challenging presentations and diagnoses. And that's really, really hard, emily, because what it does is it puts staff without training in situations of risk, but it also puts participants in situations of risk with staff that don't understand their needs, and I think what we're really worried about is these are participants who aren't always easy to work with, and they're not easy, because they might have mental health presentations as well as you know, disabilities. For example, it might be supporting someone who has schizophrenia, an intellectual disability and a history of trauma. Now you're not going to put somebody who's unqualified to work with someone who has quite complex needs, but that's what this change means. And so families are concerned because they're worried that by doing that, the people that we're supporting, without the right supports, their circumstances will worsen, perhaps their mental health will deteriorate, their disability will worsen, perhaps their mental health will deteriorate, their disability will worsen. And, as you can imagine, families are really really frightened.

Karenza Louis-Smith:

Emily, and as service providers, I think we're really, really concerned. And I think what I'm really worried about is that when participants become really really unwell and services can't be provided, who's going to support them and what's going to happen? And from our experience, these participants are likely to end up in types of institutions that are not suitable, and by that I mean in locked hospital wards as social admissions, in a hospital where they might have to be mechanically restrained, ie tied to their beds, or, worst case scenario, in prison. And we know that's real and that's true and that actually happens. Now, changing those supports for this kind of NDIS participant frightens me. It's an awful scenario.

Karenza Louis-Smith:

And so service providers are saying why have you done this? It makes no sense. Why have you done this overnight? Why have you done this without any warning? Why have you done this without any consultation? Why haven't you spoken to participants and their families and their carers and their support workers and staff that support them? Quality, registered providers who provide such an important service? We actually want more safe, quality and skilled service providers, not less. This is what this price review threatens to do. And certainly, emma, when we're talking to families, they're really worried and they're saying are you going to change your support? Are you going to change the support workers? These support workers know my son, know my daughter and I know that my son or daughter are safe. And they're safe because you understand what's happening and going on and you can help my son or my daughter the person that I love day to day so that bad things don't happen to them. And that's really, really hard to answer, emily, because the funding isn't there to be able to do that.

Speaker 5:

To the general public who don't have interactions with the NDIS. There's a lot of thought that it's just a big money pit and that providers complaining about funding. Well, it's just about money. But, corinza, can you explain why? Yes, we are talking about pricing and funding, but what does that actually mean?

Karenza Louis-Smith:

Well, it's more than just about pricing, emily. I think it's about the type of NDIS that we want. You know, and I think when we think about people with disabilities in an NDIS scheme, if you were to ask me, you know just not as the CEO of Emma, not as co-host on this podcast with you even, but you know just as a person, you know what do I think. I think the scheme should be here to support people who are most vulnerable and whose day-to-day functioning is most impacted as a result of their disability, whether it's a psychosocial disability, an intellectual disability or a physical disability. And the bit that I don't get is we seem to understand that really, really well.

Karenza Louis-Smith:

For visible disabilities yes, karenza's got no legs. You know she's in a wheelchair, she needs carers and support to do all of these things for her, but we don't understand it for people with invisible disabilities, we don't understand that this might be a person with schizophrenia. You know autism, a history of trauma, whose day-to-day functioning is completely just as hard and just as difficult as it is for the Karenza without any legs in the wheelchair just as hard. And you know the invisible disability. Karenza needs as much support. And this is the bit that I think that's really hard for people sometimes to get to understand.

Karenza Louis-Smith:

You may not be able to see the disability, but the impact that that has on somebody's day-to-day life, quality of life, just to live, just to live a life is why the NDIS is life-changing. I mean, it's an awesome scheme, it's a wonderful scheme. It's changed the lives, undoubtedly, of hundreds and hundreds and hundreds of people, and everyone should care about the NDIS and we should all really, really care that people who most need what we call high intensity supports keep them. This isn't about giving something extra. This isn't about asking for more money.

Karenza Louis-Smith:

This is about saying people with these needs, who have had this support, they need to keep this support. This is the support that they need. This isn't providers whinging and complaining for more money. This is about why have you stripped away and taken away this specialist support that people with invisible disabilities really, really need? And I could fire up Emily for hours on this topic, but I do think that we should hear from Anne and her story and you know the supports for James, because I think it's a really powerful example of why this is so important.

Speaker 5:

For this special campaign episode. We're going to hear from Melbourne mother Anne about the family perspective of this NDIS support. Anne's adult son, james, has been supported by Irma365 for the past five years as part of his NDIS plan. He has a diagnosis of schizophrenia and experiences other psychosocial conditions. James relies on intensive support for daily living, including for complex and challenging behaviours. This means James has support workers who are trained and experienced in behaviour support and who work closely with behaviour support practitioners. Firstly, we hear from Anne about James' support, what things were like, where they are now and how it has changed their lives.

Anne:

He has severe mental health issues. He has attempted to take his life. He needs constant, 24-hour-a-day, seven-day-a-week care. He now is gaining a lot of confidence. He knows that he has a lot of support. He suffers a lot of confidence. He knows that he has a lot of support. He suffers a lot of fear and by having the support workers around him all the time, it alleviates his fear. When he first came to Irma he wouldn't go out of the door of his house. Now he's out every day, which is amazing. He has a program every day. Well, most days he has support workers who have been supported themselves in understanding what James's symptoms are and how to handle him when his symptoms become very severe. So really, for James, he feels safer, he feels loved, he feels part of an extended family with the support workers and he's had the opportunity to follow through on things that he's really wanted to do but been too fearful to do, mainly creative stuff like music and poetry and reading. Creative stuff like music and poetry and reading nature walks, things like that that really help him to get back into society, into the community, and help him with his communication skills with people that he meets in everyday life. Like you know the checkout people at the supermarket, like you know the checkout people at the supermarket. He's been able to get more regularly to doctor's appointments, to dentist appointments, because the staff are able to take him and follow through on that. His health is so much better. His medical team is so much better, so his medication's been reduced a lot, so he's much clearer in his mind. So I think it's really overall the incredible support that he's getting that makes him feel special, makes him feel important and is always there for him if he's struggling, which he does struggle every day, sometimes for hours on end every day.

Anne:

What's very important for James is to have a regular team, to have predictability as to what support workers are coming in on what days. So what he does have is exactly that. So he knows that on Monday, sunday and Monday there's a particular support worker who does those shifts. Tuesday there's another Wednesday, thursday there's a support worker that does those shifts. It's predictability for James and he knows that he's got a team not just of the support workers, but he's got a team that includes a psychologist, a social worker, an art therapist, a sound and music therapist, and you know, having that team around him is just so, so important, and having a regular team that is sharing the load so they don't get burnt out is really really important as well.

Anne:

He's in a private rental at the moment, but he's been down for an SDA for the last five years and the company that is doing the SDA have had incredible amount of trouble getting builders in Victoria and getting finance for it. It's been really, really difficult because he should have been in there about three years ago. Hopefully it will start and be completed by the end of next year, but we've been told that like year after year, it's really very, very frustrating. At the moment. He's got what he needs and that is one person in private rental. There's no way in the world he could go into a group home for two reasons he feeds off everybody else's energy and so if he's with other people who have mental health issues or psychosocial issues, he would just be really, really distressed. And then, on the other hand, the people living with him would actually be really distressed, because when James is distressed, he is really distressed, frustration and all of that. So he really does need a one person unit with a support worker.

Speaker 5:

Anne got emotional when we asked her about the struggle over the years to get James the support he needs.

Anne:

For us it's been 30 years, 30 years of supporting James. He became unwell when he was 11 and he had unusual behaviours before that. But at 11 years of age he became very unwell with severe OCD. He then, from there, developed schizophrenia and spent a lot of time at 12 years of age in hospital, which was extremely distressing. He was there for six months. They couldn't work out what was wrong because they'd never seen a child of his age with such severe symptoms. They didn't even want to diagnose him, but eventually they did, with schizophrenia. So he has been treated for that.

Anne:

So what it does to our family. In fact, I just came across something I'd written about eight years ago, before James was with Irma or the other organisation he was with prior to that, just how it was for me, for us, and I had written pages, which I've just condensed down to sort of one, of just the exhaustion. It's just total exhaustion physically, mentally and emotionally, because physically you're always on edge, you're not sleeping well, you're hypervigilant, looking out for what you can do to help researching, finding doctors, finding programs. So it's physically exhausting. It's emotionally exhausting because you have a child who you actually can't help. There's nothing that you can do. It's not like his leg's going to be fixed in six months' time, but when you've got like a social illness, your life's like a roller coaster because from one minute to the next you just don't know what it's going to be like. He may be happy one minute and then 10 minutes later be punching holes in walls because of the frustration, of the severity of the thoughts that consistently keep running through his head. So you know, emotionally, having to deal with that and see your own person, your own son or daughter, in that much distress and not be able to do anything about it, is just unbelievable.

Anne:

And there's also just coordinating with professionals, professionals who just don't get it, who are supposed to know and be able to support you. Before I came to Irma, that was just a constant. I would always be trying to get you know the professionals talking to each other to get team meetings going and of course it was near impossible to do that. And one thing with Irma is fantastic because we have team meetings. We have a set team for James, we get together regularly. So that's taken a lot of pressure off and me too, you know back in those days, getting James to appointments all the time.

Anne:

Now I don't necessarily have to do that, because the support staff can get him to have his eyes tested, his hearing tested, his teeth done, as well as his psychiatrist, as well as his psychologist, as well as all of those other therapists that he's seeing. You know, I don't have to do all that and in fact I couldn't have done all that. It was too much for one person. There's my husband as well, and he's been supportive the whole way through, but he doesn't think like. I think Most of my friends who I've met through mental health have separated or divorced because, you know, it's too hard. It's too hard.

Speaker 5:

The stability of his support means James has come a long way in the past five years. He recently travelled interstate with support workers to attend a family celebration.

Anne:

It was James's first trip with support workers to attend a family celebration. It was James's first trip with support workers in about four or five years up to Brisbane. That was for my brother's 60th and James wrote the most beautiful poem and basically had my brother in tears. You know, most people just see his trauma and his symptoms but no one ever sees that deeper part of him and it was so lovely for that to be able to come through. You know he's come a long way in being able to do that. He uses with the encouragement of the workers as well, and Irma uses a lot of his time writing and artwork and all of that, so that's a great benefit.

Speaker 5:

James's dad, john, popped into the room while Anne was talking with us, so it was a bonus to get his thoughts on the NDIS too.

John:

Look, it seems to be immensely complex and I think people who didn't have an advocate would easily fall out of it. So you've got to have someone pursuing it for you, but if you do, it's fantastic. Absolutely, absolutely world-class, leading, I would say.

Anne:

So what difference has it made for us as a family?

John:

Oh, immense For James. The care that he's got because of the quality of the people is what has made the difference. You know he doesn't need an aged care worker who comes in, ensures that he gets washed and makes his bed. It's a lot more than that and it would set him back five years if they did that.

Anne:

Yes, he needs staff that have been educated on mental health. So staff with extra qualifications. Yes, absolutely. Listen to the families, listen to the clients and know that there is a full range of disability, from very intense requirements down to less intense, and the people that need it the most well, they all need it, but you can't take away from the people that need it the most. You really can't take away from them, especially when they've experienced how incredibly wonderful the support that they're getting has been and what a huge difference it's made to their lives and their families' lives. It would be devastating, devastating to take any of that care away when the NDIS is doing such a fabulous job in supporting high-needs people.

Speaker 5:

Anne and John acknowledge there are decisions that need to be made within the NDIS, but not by reducing crucial supports for participants.

John:

If they're looking to save money instead of pruning little bits off the edge, then they have to get in there and get the very clear rorting that goes right through the system, and they all know that it's there and, for whatever reasons, they don't seem to act on it.

Anne:

Clear the rorting. Get rid of the rorting, but don't take money away from those who desperately need it.

Speaker 5:

Anne would like to see far more understanding about psychosocial disability, not only from the general public, but even from health professionals and the NDIS.

Anne:

Right from the very beginning, psychosocial wasn't even included in the NDIS and even now when I get stuff from other medical things they'll say can he walk, can he talk, can he shower himself? And I'll say yes, yes, yes. Oh well, you know three quarters of the questionnaires are about physical disability. Do they ever ask can he cope when he goes out into society? Can he have good communication with people? What are his symptoms, what are his coping mechanisms? What support does he need with those? They just don't ask any questions relating to psychosocial. But the NGOs initially had no understanding at all and I think still does not put psychosocial on the same level as physical or intellectual disability. It's a massive disability.

Speaker 5:

Anne's message to the decision-makers is clear Her son's life is at stake if NDIS pricing interferes with the support he relies on.

Anne:

With the intensity of the support he's getting, both the physical support of the support workers being there, knowing how to deal with his condition, teaching him how to deal with it, how to think differently. With all the support he is getting now, we can't see that that suicidal tendency will come to any awful end. That was a terrible, terrible time, and we would hate to go back to that time again where he was left unsupported and being looked after by people who don't really understand him or how to support him. We need mental health, trained, intensive, trained support workers who are paid, who are paid the money they deserve. I'm sure they're not even paid the money they deserve. Now, you know, james, if he's having symptoms and he's crossing a road, he won't see the cars coming. All of that. If there's a fire in the unit, he won't know what to do. He is really very, very, very vulnerable unless he has this high intensity support.

Speaker 5:

I have a lot of thoughts after hearing Anne and knowing the work that we're doing at Irma365 and also seeing the advocacy by providers all over the country, so I wanted to wrap up the conversation with Corenza Lewis-Smith again. So I wanted to wrap up the conversation with Corenza Lewis-Smith again. Hey, corenza, I know for me, I'm not a frontline worker, but I work at Irma 365 and I'm learning so much about the NDIS and seeing how amazing it is, and I do have a lot of thoughts about why it is so terrible some of these things that are being proposed, the cuts. I don't think it's too dramatic at all to say people's lives are on the line.

Karenza Louis-Smith:

Look, I agree, and I think when you hear just what Anne was talking about and the impact that that's having on James imagine stripping away James's specialist staff who understand his mental health, who understand his disability, who are able to support and help him you know she's really worried. What's going to happen to James? I'm really worried. What's going to happen to James. You know, and I think this is the piece that we should all be really fired up about. I mean, we want an NDIS that we can all look at and go. This is fantastic. This is supporting people with, you know, a lot of vulnerabilities. You know, and I know if that was my son or my daughter, I would be walking all the way to Canberra Hill. You know, banging on the minister's door, going, what have you done? We should all be thinking like that.

Speaker 5:

I agree, and I think it's also important for people to think that you may not access the NDIS right now, but you may need to in the future and people that you love may need to, and I think, once you shift your mindset about that, really every Australian, everyone living in Australia, should be wanting an NDIS that is well-funded. I know there's been rorting and stuff. It's another podcast.

Karenza Louis-Smith:

Emily, we should do a podcast on that. But absolutely we want an NDIS that's safe, quality driven and it's important for every single Australian.

Speaker 5:

Thank you to Anne and John for talking to us for this podcast and sharing their experience. To find out more about the For a Better NDIS campaign and to have your say, go to the website, for that's the number for abetterndiscomau. The details are in the show notes for this episode. You can also check out the hashtag forabetterndis on social media.

ermha team:

You've been listening to Get Real talking mental health and disability, brought to you by the team at Herma 365. Get Real is produced and presented by Emily Webb, with Carenza Louis-Smith and special guests. Thanks for listening and we'll see you next time.

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