wawani mai ki te Hui. Ko Mihingarangi tenei, e mihi atu nei ki a koutou katoa. Welcome to The Hui ` Maori current affairs for all New Zealanders. E taro ake nei ` - (SCREAMS) - A whanau in crisis ` - No! (CRASH!) - and a mother at breaking point. - My great fear at the moment is that someone is going to die. - We look at one whanau's struggle to get their autistic son the support he needs. - He's our little superhero. He just deserves a good chance at life. - Then ` they were touched by tragedy on the moana. - Everyone was around crying and I didn't really realise it until I saw that casket. - Now, the tamariki whanau are sharing their water safety message. - If we know how to be on the water, then we have that responsibility to share that. www.able.co.nz Copyright Able 2022 - Tahuti mai. For a small but significant group of tamariki and young people in Aotearoa, mainstream health and education services don't go far enough to address their severe and complex behavioural needs. Often, these children can present a danger to themselves and others. Soon, we'll talk to two experts about the challenges whanau in crisis face, but first, one mother wanted to share her story with us to highlight how desperate the situation is for her whanau and how urgent the need is for greater co-ordination and support. We've chosen not to reveal their names. In a note to viewers, parts of the story are distressing. Anei te ripoata, a Ruwani Perera. - I want to stay here! - It's like living in a war zone. - Ow! Ow! Stop! - No! (CRASH!) - Come on. (BANG!) - I feel like I'm in a domestic violent relationship with an 11-year-old son I can't escape. - Her son's violent, explosive outbursts have pushed his mother to breaking point. - Punch me! Kill me, please. - My greatest fear at the moment is that someone's going to die. That's how serious our situation here at home is. - A whanau frustrated with how hard it is to access the help they desperately need. - He's our little superhero. He just deserves a good chance at life. So, that's what I'm fighting for. (SOFT PIANO MUSIC) - They could be any family anywhere in Aotearoa. - Who got these, Mum? - But for the South Waikato whanau, these moments of normality are rare. - So I have three children in the house on the autism spectrum. Yeah. Yeah, it's very hard. - After we have toast, can we have a cookie? - You know what to do. - Her struggle is compounded by the fact that one of his sons also has complex behavioural difficulties. - No! I don't want to do anything! - Diagnosed as autistic since four, he also has attention deficit disorder and global development delay ` - No! - which means his cognitive skills are of a much younger child. When did the violent behaviour start? - 4, 5. (CHILDREN CRYING) - He would be violent towards his brother. - Stop. - (SCREAMS) - He would look at his brother and, 'Oh, I haven't hit you today,' and he would go and just... blatantly smack him in the head. - We arrive as the boy is getting ready to go to school and he appears untroubled by our camera. - (YELLS INDISTINCTLY) - But his mood can change quickly. This angry outburst began after a minor disagreement with his mum over chocolate. - I want chocolate. - Well, you can't have chocolate right now. - (CRIES IN FRUSTRATION) - You know, I keep getting asked, 'What are the triggers?' - (YELLS INDISTINCTLY) - Could be any trigger for him, and he can go 0 to 100, quick smart. (BANG!) - So, now he's 11 and we're now dealing with knives. - I know! (SOBS) - He has been seen to grab a knife and attempt to stab his siblings. And at one point, he's been seen to stab himself. - There's no question that this boy is crying out for help. But because he's still under 12, he's considered too young to be properly assessed for his mental health. And he's too young for many of the places that deal with children with severe behavioural disorders. So you've had to capture stuff on video, in order to get people to sit up and take notice? - I'm not being heard, so if I capture it and show the right people, hopefully they'll listen and see. - (SCREAMS) (BLEEP!) - These are videos from a year ago. - And what's changed? - He's getting more violent and the incidences are becoming more dangerous, more volatile. It is scary. It's real. - The whanau has received financial assistance and engaged with more than 20 agencies over the years. This mother has also tried parenting courses and various family therapies, in search of ways to better manage her son's behaviour. But the whanau say no one agency has joined the dots and come up with an effective plan her boy so urgently needs. One of the challenges for young children and youth with mental health problems is that they're fragmented and spread across a wide range of services. Older children tend to receive the larger share of resource, because they're seen as a higher priority. Over and above his autism, this mother is convinced that her son's behavioural problems are related to his mental health, but a lack of coordination among services means it isn't being prioritised. Has anyone actually come here, spent time with you, seen it all unfold? - No. They still firmly believe there are no mental health issues at all. It's all behavioural. They don't like to diagnose them at this young age. 17 is... that's five years away. - Can you wait five years? - But trying to access those supports, they're finding that really hard. And it's either because of his age or where we live or... Yeah. - At last, this year, the whanau received 60 days of respite care, which they've used to give themselves a break for a few days at a time. It's a chance for his mother to catch her breath and get some relief. But it's a temporary solution. - It's just a Band-Aid, really. - What's the impact like on your marriage? - We're hanging on by a thread. We're doing the best that we can. - The agencies that you're dealing with, do you think they understand the severity of the situation? - No. And I've been very clear and honest. This has been going on for years. - So, do you think his behaviour is getting worse? - Absolutely. And it's the rest of the household who are suffering. - His behaviour has been assessed as putting others at significant risk and the whanau have been so desperate that they've made numerous reports of concern to Oranga Tamariki and police since September 2021. Police regularly are called here? - Yes. Every time, they've come, but because of his age, there's nothing they can do. - She's scared that the issues with her son could see her lose all three of her kids. Is that a possibility? - I still don't know. (BANG! BANG!) - This mother says she's left with no choice but to go public, desperate to get help before her worst fears are realised. - The lengths I've had to go to, just to be heard. We're at media, now. Are we going to get the help? Is this going to make a difference? - Do you love him? - EMOTIONALLY: I do. He's a beautiful boy. Don't go too far, please. And this is not just about me either. There are plenty of family out there, living the same nightmare, who don't have a voice. - Ka aroha na Ruwani Perera, tera purongo. Since filming, the whanau felt the only option left was to sign over care of their son to Oranga Tamariki. On June 30, the child was prioritised to be part of an intensive wraparound service, or IWS, a support for young people aged 5 to 14 who have behavioural, social and/or learning needs that are highly complex and challenging. Waikato District Health Board acknowledges the difficulties whanau face in navigating a number of agencies when seeking help and says it is working with the agencies to improve this. After the break, we speak to child adolescent psychiatrist Dr Hinemoa Elder and Dorothy Taare Smith from Taonga Takiwatanga Charitable trust. - We look at one whanau's struggle to get their autistic son the support he needs. Before the break, we met a whanau in crisis as they struggled to manage their son, who has multiple behavioural challenges. To discuss the challenges whanau like this face, I'm joined by Dorothy Taare Smith from Taonga Takiwatanga Charitable Trust, who support whanau with autistic tamariki, and child and adolescent psychiatrist Dr Hinemoa Elder. Tena korua. - Kia ora. - Just wondering if you could give us an update on the whanau? - OK. So, there's been huge update with this whanau, not so good. So, Thursday, I facilitated a hui with the agencies and with Oranga Tamariki. Um, at the time, our young man was in temporary care of Oranga Tamariki. At Thursday's meeting, whanau and the agencies who were present pleaded for Oranga Tamariki that it wasn't safe for him to go home at the moment until a transition plan and a crisis plan was put in place. How everything turned out, Oranga Tamariki were to drop him home last Friday at 11 o'clock. As a result of that, Mum got scared, picked up her whanau and left, because Mum can see the risk. - Can I just jump in there? So, since this story's been to air, this tamaiti has gone into the care of Oranga Tamariki, 'cause there's` because there's no other option for the whanau? - Yeah. So there's no other option for the whanau. - There's no support, nothing came through that they were asking for? - There was a couple of options put on the table. One was to... um, have full-time carers in the home, 24/7. Papa didn't agree to that. He didn't want strangers in his home. The other alternative was, there was no other alternative because, um... what had happened. - So they needed a break, right? They needed a break in the circuit. So Oranga Tamariki has taken this child. And, you know, what` What are their` What's their vision of it going to` is it, they want him home with some support? - Whanau want their son home, desperately, but they can't have him home at the moment. When I organised the hui with the agencies on Wednesday afternoon, I asked if they would be able to share a copy of a transition plan. So we need to remember that children on the autism spectrum, they need to be transitioned from one place to another. - Absolutely. - And that's a delicate... operation, I guess, and it's a lengthy operation, to make sure that the plan is in place, put in place by specialists who know and understand autism. - Ka pai. I'm going to come to you, Dr Hinemoa, because, you know, when we're talking about tamariki in Oranga Tamariki, full stop, they need lots of support and careful management. But when we're dealing with tamariki, such as this tamaiti, what kind of support does he need in his whanau? - Kia ora. Tuatahi, e mihi kau atu ana ahau ki a ratou ko te whanau e noho i roto i enei... wheako piere nuku. This is a` this is a very, um, an incredibly stressful situation, and I want to salute this family for courageously, and in their desperation, coming forward to the media. How could they best be supported? I think, in my experience, what's needed at the heart of the best, most effective support and healing support is that they actually need one person that works with them who is the point of contact for all the other services. That's the first thing. And this is a person that they can begin to trust, with cultural and clinical expertise, who will take the time. And we heard that as a theme, didn't we, from the mama in this whanau. Time is such a crucial element, which is often forgotten about in the planning around keeping our mokos that are going through these situations at the centre. So that person has to be reliable and predictable and turning up no matter what, and ensuring that the voice of that moko and their whanau is absolutely at the centre of the plan. Communication is key, too, and` and, you know, there's going to be some challenging, ongoing challenging of how the whanau is working with their with their tamaiti, and all of the kids. So this is about somebody who can actually be the right person. You know, we've` We know about these kinds of people. In some communities, it's a Whanau Ora navigator, in some, it's a person from Child and Adolescent Mental Health Services. But it's the person who is going to have that relationship. Without that, you've got very little. - And that's what the legislation says ` we're putting the tamaiti at the centre of everything and everything works around it. In this situation, are you seeing that? Are they having one person who they're working with? - When I attended the hui on Thursday, so I facilitated the hui, and, in my opinion, it was a mess. There were delays. No one was responding to follow up emails and text messages and phone calls. No one knew how to access the services. Oh, sorry, I guess they did, but there was not a lot of thinking outside the square. So I had suggested if, you know, I'm totally against it, but trying to find, outside of Waikato, who can, you know, support this whanau. - What's the situation as it stands right now? - So the situation as it stands right now is that this young man is in custody of Oranga Tamariki and he's currently staying in a motel with two support workers or carers. - And what are they wanting to` What's the plan for him? - Mum doesn't know. Mum doesn't know when he'll be coming home. She tried contacting Oranga Tamariki after she shot off on Friday. Came back. She` She came back because she was scared that` and she was worried about her boy and she was scared she'd get in trouble by the authorities. Now, Mum shared with me that she's been in state care before and it wasn't a good time for her, so she's worrying about her boy. - We're going to keep on this and we're going to keep in touch with you and the whanau. Hinemoa, for whanau, just generically, if you have someone or whanau like this in your community or in your whanau, you know, how's the best way for me and you to support people? - Yeah. It's really hard, isn't it? Because we need to recognise our own judgements. Witnessing this kind of whanau suffering really pushes people's buttons and it can shut people down. It can` It can also make people run from the kinds of services that they actually need. So, it's complicated. I think we need to learn as a community what these concepts like global developmental delay actually mean, and to help understand the needs of our mokopuna with those` and whanau with those complex issues. We also need more people to do training to become respite caregivers. It's one of the big things missing from this whole landscape. And one of the key things we know that our tamariki that live with these complex issues is that they can become culturally disadvantaged as well. So these whanau become very isolated. Our tamariki are not included in, particularly, cultural activities. And maybe, if there's one last thing I'd like to say is, I hear this discussion around the difference between what's called behavioural and mental health issues, and that really troubles me. These young, young tamaiti who are grappling with developmental delay, which affects their emotional growth, their` the way that they think and see themselves in the world, use their behaviour as communication, so, you know, to` to try to separate their behaviour from their mental development, their ability to cope with distress is incorrect and is pathologizing. So if there's something else that we can do, as community people, is to hold to account anyone who tries to use those labels and those ways of understanding human behaviour in a way that essentially keeps our kids in pain and suffering. - Tena korua. Thank you so much for coming on today. And Dorothy, we're gonna keep in touch and we're gonna keep on top of this story. - Kia ora. - Kia ora. - Kia ora. - Akuanei ka tutaki atu ki tetehi whanau e tautoko ana i te kaupapa World Drowning Prevention Day. - We look at one whanau's struggle to get their autistic son the support he needs. It's a kaupapa that raises awareness and also commemorates the lives lost by drowning. There are 77 fatal drownings in Aotearoa every year. One whanau taking part in this year's commemorations is hoping to save other whanau from the heartache they've suffered. Anei te purongo a John Boynton. (SOLEMN MUSIC) - For generations, Rihari Wilson's whanau have found a path back to the moana. - My great grandfather was a descendant of great fishermen and people knowledgeable of the moana. So that kind of matauranga was handed down right up until us. Even my nephews and nieces, they're well versed in tikanga on the water. - Rihari is part of the Tamaariki whanau from Ngati Whatua Orakei, who are well-known kaitiaki of the moana. His earliest memories are filled with days out on the water with his dad, uncles and cousins. We always went as a whanau onto the water. Yeah, out to Rangitoto. Fishing, diving, swimming, keeping that kind of aroha for the moana alive within us. But when Rihari was just 6 years old, tragedy struck his whanau. His father, Jack Arama Wilson, died at the age of 29 while diving, suffering an asthma attack in the water. - All I can remember is being in the car. It was wet and miserable. Not long after, we were up at my great grandmother's house, and everyone was around crying and I didn't really realise until I saw that casket. - To lose a loved one out at sea was a devastating blow, and a mamae they carried for many years. - For my dad to pass away in the water, it should not have happened. - Years later, his koro would share an important lesson he'd taught Jack about tikanga on the water. - So he told us, 'I told him, if you're ever sick, 'don't go out on the water.' But he didn't listen. - Did it change your relationship with the moana? - It definitely did. We come from a whanau full of divers and fishermen, and that's just not me. You know? I've only told a couple of people that I can't go down under the water. I just keep on thinking, 'Oh my God, this is where my dad was, and... 'was this the last place that he remembers, being down there?' - But in 2016, his whanau would lose another whanau member in the water. Rihari's brother, Jack Arama Wilson, died in a swimming pool in Rarotonga after suffering a heart attack. - Yeah, that was hard, losing my brother. Especially because he was the potiki. He was the baby. He was our baby brother, so... - His younger brother left behind a partner and two young tamahine. - I think the process was to look after who he had left behind, and that was paramount to anything else. His girls were everything to him. Whanau was everything to him. Just like Dad, so... - Maori continue to suffer high rates of death on the water. In 2021, 74 people drowned in Aotearoa with 23 Maori fatalities. This accounted for 31% of all drownings. - I'm really passionate about adding the humanity back into the drowning statistics, that this is someone's life and they have great importance to those that love and care for them. - Nicola Keen Biggelaar is from Drowning Prevention Auckland, an organisation which has formed a close relationship with the Tamariki whanau. - For me, as Pakeha, it's really interesting to understand the Maori view that you come from water and we are water. It is who we are and where we come from. And I really look forward to pulling that thread across all of our education. - OK, everyone understand that now? - Harry Aonga is helping to pull those threads together for his organisation. - And why you need to hold on to your life jacket tightly is to keep you warm. - Today, he's holding a week-long Safe Swim program for children aged 11 to 17. - So that's targeting at-risk communities when it comes to drowning, which is Pacific, Maori and Asian. Giving them a free program that they can engage in and learn new water competencies, not only to keep themselves safer in the water, but to keep their whole family safer. - Yep, nah, you can go. Step out nice and far. - Being able to provide this education, like how to use life jackets, is integral to reducing drowning rates. - When they come here, it's not just about swimming, it's about learning new activities. And when they are learning new activities, that's something that they're going to go home and teach their loved ones. - Guys, get close together. Get close together. - Rihari Wilson knows what it's like to not have loved ones come home from the water. This month, he's taking part in commemorations for World Drowning Prevention Day, representing his whanau and sharing their matauranga of water safety. - We all need to work together. And especially when the water is not just ours. If we know how to be on the water, we have that responsibility to share that. - Na John Boynton tera ripoata. Kua u tenei waka korero ki uta e kare ma. Noho mai ra. Captions by Sally Harper. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2022