1 CROSSING ALERT TRILLS UPLIFTING MUSIC Captions by Desney Shaw. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 SOLEMN MUSIC Marlena and David's son, Ashley, has autism. 15 years ago, they asked for support from mental health experts. Ashley was placed in care. But for the past five years, he's spent most of his days isolated and in seclusion. It's a situation they never expected. This is their plea for a review of Ashley's care. That's my son, Ashley, just coming out of the surf. He used to really love surfing at this beach. We used to spend half a day out here every day, and that was marvellous. He's our only child, and, uh, he's in a helpless situation. There's nothing he can do about it. There's nobody, really, who can get him out of where he is. Political pressure in NZ has led to a shift from institutional care since the 1980s, but the United Nations has criticised ongoing practices of seclusion. That's about the size of the room he's been in for the last five years. We're not allowed to go in there. Uh, it's, sort of, forbidden, mainly because of privacy issues, I believe. He's got a paranoia about being in a prison, and effectively, it is one. It's a terrible situation, particularly since he's autistic. It's almost like torture to somebody like that to be in a situation like that. So it's just, uh, unbelievable that it'd happen` this sort of thing happens in the 21st century. We have to cope. If we don't cope, then Ashley won't cope, so... Well, seclusion is` is another word for solitary confinement, meaning you're locked up by yourself for 22 hours a day or more and not able to interact with another human being. And in countries around the world, nobody ever describes what they're doing as solitary confinement. It's always got different labels. SLOW PIANO MUSIC He had a very difficult birth ` like, 28 hours. He was just very very quiet, and I thought, 'Oh, this is great.' Didn't know what was coming... was having autism. He wasn't diagnosed until his teens, but he was just such an anxious child. Anything new was a real challenge. He went to school, loved the outdoors. He didn't really want to learn. He always wanted to go surfing. He'd knock on my bedroom door at 5 in the morning. 'Mum, come take me surfing!' (CHUCKLES) And I'd think, 'Oh no.' But because he enjoyed it so much, I'd get up and take him out to the surf before school. Sometimes there would be ice on the sand. Yeah. Very gentle. Very shy. Not very verbal. Loved the animals, of course. When there were baby roosters, he would insist that I help him take these roosters about 2km or 3km down through the paddocks so that they wouldn't get their heads chopped off. (CHUCKLES) He loves nuts. He's so routine driven that he's always wanting to have the same thing every day. Expects it and gets very angry and annoyed if he doesn't get it. One thing about Ashley is he is very grateful, and so often he'll say, 'Oh, Mum, you're so good,' and, um, 'You really help me.' Really caring for Ashley more than most parents would for the last 20 years, so if we're routine driven too, it's not surprising. Yeah. Oh, yep, we're fine for time. OK, good. OK. SLOW MUSIC How do you think he'll be today? I hope he's better than he was yesterday. Tawhirimatea ` it's, uh,... a unit for forensic patients. It's supposedly a rehabilitation unit. It's definitely long term. BIRDS CHIRP Ashley has lived here for 10 years. For the last five, he's spent much of his time locked in the seclusion area. Formal requests to film inside the facility were denied. Five days a week, we spend an hour with him. He does his watering the garden, um,... (CLEARS THROAT) and maybe plants a few plants that we bring along, um, go for a bit of a walk around, uh, the courts, and sometimes if we're lucky enough, we go down... we walk down to the chapel. Ashley is allowed to move beyond his unit for an hour or so each day. Today is a treat. His parents have permission to walk Ashley down the road outside the facility. You often sing a song to me. What's the song? # If you go down to the woods today` # No, no, not that one. # Here comes the sun` # WHISPERS: Happy Happy Joy Joy. Oh yeah! # Happy happy joy joy! # Happy happy joy joy! # Happy happy joy joy! # Happy happy joy joy! # BOTH LAUGH Five years ago, before he went into seclusion, we would have half a day together nearly every day. Oh, Mum's a godsend. That was really good, because he could do things he really enjoyed, like, you know about diving, surfing, a bit of trout fishing, even. It was really` really great. # Little darling, it seems a year since it's been there. # Here comes the sun. Here comes the sun. # And I say, 'It's all right. # I'm gonna` < Oh, Ashley, no! (SHOUTS) Hey! It's only the bloody body. < Ashley, you're too excited. < Shh. No, no, no, no, no. < Ashley, you're too excited. Take a deep breath. Nah, come on. Here you come. Here. Here, boy. He has all these impulses coming in through sight and through auditory processes, and he can't make sense of them. They all come in too much of a jumble, and particularly his auditory processing. And that, tallied with his reactions to loud noises, or even more than one person talking at the time is difficult for him. So if you get two or three people holding a conversation or joking together, he will feel right out of it. Yeah, it disorientates him. He can't process all this information coming at the same time. Just take it calmly. ...a nice little boy when I went to school. About 10, 12 years ago, when I was working for the council in Gisborne, and Ashley was going to a job centre where they looked after people with disabilities, and he came up to see me, and I was at the tea room at the time. It was incredibly noisy. People were playing darts, and it was, sort of, at the end of a championship, and the noise was absolutely horrendous. He sat with me for a while, and, um, he just got more and more agitated, and then suddenly he flew across the room and started to try and punch this work colleague. Several of us realised what was going on. We rushed over, and we grabbed him and separated and had to send him off to the hospital. They called the police, and he ended up in seclusion. Even prior to being hospitalised, he'd always had this phobia. I don't know where it came from, but he always thought he'd end up in prison. So the psychiatrist, he said he was going to put Ashley in seclusion, and Dave queried this, and he said, 'Oh, it will steel him up.' Well, it certainly didn't steel him up. And Dave, sort of, argued with him, but this guy was adamant. We love you very much. Love you too, Mum. Oh, I love you. (SPEAKS INDISTINCTLY) Mmm. OK. (CHUCKLES) Great to see you, eh. You're doing really well. And I think that the experience of the seclusion was so traumatic for him that it really made his life a lot harder. The Working Group on Arbitrary Detention have said, uh, following on from what a UN special rapporteur expert on torture had said that you should never be locking up people who've got mental disorders or intellectual disabilities in solitary, and even for those people who are not disabled, the maximum anybody should be locked up is 15 days, because of the... After 15 days, it's called prolonged solitary confinement, and it can have irreversible psychological effects. These animals need` deserve fair treatment, like I do. The United Nations has recommended NZ review this practice. Now he's in a situation where there are loud noises, and this is the sort of thing that can set things off. It can be just three or four people talking close by. He then goes` maybe tries to assault a staff member or something, and then he gets pushed into seclusion again. And it's all to do with the environment he's in. That's what's really distressing. And no real allowance has been made for that. During the season when... (SPEAKS INDISTINCTLY) ...get bipolar disorder. Well, bipolar disorder's from having been locked up in a cell. They say it's negative. And I do not agree that bipolar disorder is negative. They just keep prescribing antipsychotics and saying, you know, 'If we get the treatment right, then he'll come right.' But it's not gonna happen while he's in that environment. That's why we're so adamant that he has to get out of there. What do you remember when you were little? I still am a little boy. I still am a little boy. A nice little boy. I see him as a young man very` very much in a great struggle, um, just to keep himself... together in some sort of way ` in a way that we wouldn't really recognise. I doubt if I could've survived what he survived. So I've got a lot of admiration for him, really. I just love being with him. I think the same counts for him too. We love each other in that sort of way ` a simple way, yeah. Capital and Coast DHB declined our request to discuss Ashley's care and asked that footage of Ashley not be shown. They're trying to, uh, limit his freedom of expression, and unless it's going to be dangerous to his health, I really can't see that they've got any grounds for, uh, stopping, uh, filming. I mean, I'm assuming they're frightened of legitimate criticism or media comment. It may not be criticism. Um, what have they got to hide? Social connectedness is so important to him ` to have the right sort of people that you can trust. And people that` that understand him. Yeah, that's right. Give him those people in a more normal situation with normal comings and goings of people. Yeah, an ordinary life. Hopefully he can get more and more trips like that out and eventually get out to a nice place in the country where he can do that every day. Let's face it. He only does that about once a fortnight or once a week at the very most. Yeah, if he's lucky. # Happy happy joy joy! # Happy happy joy joy! # To lock somebody up, you normally have a psychiatrist and traditionally somebody less senior, like a psychiatric nurse. Even back in the Victorian days, we used to have two GPs would lock you up. We're worse off than we were then, because if it is a psychiatrist and psychiatric nurse, there's an imbalance of power there. There's not two equals, so it's, in my view, too easy to lock somebody up. And then it's hard to get out. Ashley's parents are his legal guardians, but the district health board now has responsibility for his care. A psychiatrist determines treatment. Seclusion is regarded as a treatment. But his parents have repeatedly tried to get Ashley a life in the community. This is something me and you talked about last week. You know, what do we want for Ashley most? We all` We all agree, I think, that we want to see him in a rural environment in a very peaceful place where he's, um, supervised, uh, probably 2:1, at least. I'm an advocate primarily to Ashley, but, um, most of my work is with Dave and Marlena, his parents. It's, uh... It's hard to not work with the person, um directly, but in Ashley's case, no, his living situation is so compromised, I have to do it with his welfare guardians. He's quite able to live a good life in the community in the right setting. In the right setting. > So I think we need to think about how those steps out are gonna eventuate. And I think your idea of getting more volunteers down to try and take him out, uh, is something we can do pretty well straight away. I think we'll have to think quite creatively about how we introduce people. I guess we need to get to know the person first. The right to freedom is a fundamental human right. Everybody takes it for granted. Can you imagine what it would be like just to be locked up in seclusion for a short period of time, a few days, let alone for years and years and years? There are many human rights violations, and many of the worst involve disabled people, but much of the public doesn't understand this. SOLEMN MUSIC # Happy happy joy joy! # Happy happy joy joy! # Happy happy joy joy! # It's not just being in a room on your own. Seclusion is... supposedly low stimulus. On the one hand, if there's no other people about, it's deathly quiet. And then if you've got three others in that same unit and they're all screaming for 24 hours a day, it's totally unbearable. What happens to many people is that because of some behaviour or perceived behaviour or risk within a mental health facility or a similar facility, they get placed into what's called seclusion. They might be put there to calm down, to de-escalate; there might be a locked door. But there are better ways of doing these things. Josh Barber also has behavioural challenges. He has 24-hour care, but he lives in the community. I've always been worried that my son ` that Josh ` that if something happened, that he'd be taken away from us and either put in seclusion or something like that and we'd lose him; that we wouldn't be able to help him. Josh is in residential care, um, with 24-hour, seven-day-a-week support, because he needs that. So, he's severely autistic, and he's non-verbal. Actually, he can't read or write, so he can't speak, um, and he has behavioural issues ` quite severe at times. He can headbutt, and he has headbutted me. He has headbutted my husband. One time, um, when Gary said no about something, he just ran straight across the room ` boomf. And, I mean, it nearly knocked my husband out. Spectrum do a lot of outside activities, a lot of visits to the community, which is what we've always wanted for Josh ` to be able to be part of the community, cos he` he should be. And they do really strive to do that. He's got friends. One of the boys in the house with him, he's quite` actually, they get on quite well together. And it's pretty full. Josh has got a bigger room with a rocking chair ` a easy boy ` that he loves to stretch out in. He can play his music or put telly on. And he'll go into his room, and he loves that space. Whee, whee. (CHUCKLES) Jump, jump. (CHUCKLES) I feel that he's happy and he's safe and he's living a fulfilled life as he can. And I think that's` that's good. SEAGULLS SQUAWK WOMAN: What about seclusion? Can you tell me about that? Uh, I don't really like being in seclusion. It's too tough on my head. (EXHALES) Why is he in there? Because... he ended up going into the mental health system instead of, um, into a service matched to his needs, probably a service more matched to his intellectual disability, his learning disability. He went in, and because they couldn't find a place, he became conditioned into the mental health system. And what is your room like? Oh... (EXHALES) Well, I cleaned it up going back five days ago. It's a cell. It's got no toilet or running water. It's go a bedpan, a bed, which is usually a plastic mattress and nothing else. TUI SINGS QUIETLY His room is where people go when they're in deep distress or when they're being aggressive or when they're being` when they're in trauma. WATER RUSHES, TRICKLES GENTLE MUSIC You know, I've experienced seclusion, but for Ashley, he's... he's had significant periods ` you know, years ` living in seclusion. But from my experience, for me, it was... I mean, it's like death. For me, that's the only word I could really put to it. It felt like I was completely... All my choice and ability to have a voice was taken away, um, because you're locked in there without even the ability to get a drink of water. When you're distressed, particularly at the time, distress makes it more damaging. So I'm` when I've been in those situations, it is like I've died; I had, sort of, death experiences. And that's what it reminds me of when I look back on it. I got out on a review, and I've got out a few times by walking out, running out, um, and then going back as an advocate or going back and explaining why I left. And by doing that, I've often found that I've taken back the power of the situation. SEAGULLS SQUAWK You tell 'em what the plant is, Ash. This plant's called kawakawa, and it's very good for medicine purposes and emotional well-being. (SNIGGERS) Three times a week, Ashley is taken into the community with support workers. Hell of a walk back. Yep, they did very well. Ashley's case is just a big, dark cloud. You know, he should not be living in solitary confinement. He should be living in the community and cared for. When I was a young boy, I used to study a book on entomology. Entomology is about insects. These insects are mayflies. (SPEAKS INDISTINCTLY) ...on a fishing line would be a... pheasant tail nymph. Yeah. So they're actually... If you want to know the right sort of hooks to use in this area ` on the Tongariro ` they're the size-14 long shank, yep. OK. And what else we got here? # Little teddy bears are having a lovely time today. # Watch them, catch them unawares. # ALL LAUGH NZ has been examined by the United Nations on the Convention against Torture and Ill-treatment and on the Convention on the Rights of People with Disabilities. And both these committees have said that NZ can improve around its seclusion practices. We can end seclusion. We can build best practice into what we do in our mental health facilities and other facilities so that this doesn't need to happen. The, um, UN Convention on the Rights of Persons with Disabilities, which was a 2006 convention, NZ interestingly chaired the working group, but they haven't since then, uh, signed up to the optional protocol which allows people to make individual complaints. So we were gung-ho, how wonderful this was and advanced in international law, and then we were extremely backwards about putting it into place. And in the bush, I am very happy. Cos... (SINGS) 'When you're happy and you know it, clap your hands. Whoo! 'When you're happy and you know it, clap your hands. Whoo-hoo! 'When you're happy and you know it, and you really want to show it, 'when you're happy and you know it, clap your hands.' Good. Are we happy? That's it, girls. (SINGS) 'Come on, everybody.' I'm very happy. We are very happy. Are you happy? We are very happy. BOTH CHUCKLE Let's get to the next stream. People should not leave rubbish lying around, cos rubbish makes the place untidy, so put this in the bin. Now, rubbish can actually be recycled, cos that does harm to the Earth. Recycling is very good. I am very behind... When I was a young boy, I used to believe in Cash for Cans. Our, uh... I used to do Cash for Cans. I used to have a friend called Jimmy McNiel, and him and I would drive all the way to Mahia to do Cash for Cans, yes, and we'd make a lot of` we'd make money for our friends, and then we'd have enough for a can each. I mean, he's with friends, with people he trusts and knows. He's just having a lovely time. And he's, sort of, a bit overexuberant at times,... (CHUCKLES) which is to be expected. Ooh. Who's a lucky boy? Ooh. Who's a lucky boy? We... Ooh. Am I being selfish, am I? Couldn't have that, could we? So we can all have a cup of tea at the chapel, I reckon. What do you reckon? Take your sausage roll, and we can go to the chapel and have a cup of tea with your sausage roll, OK? At the chapel? At the chapel. Bargain. Let's go. What he was talking about the nymphs in the stream, pretty accurate. And the type of hooks you use ` number-14 long-shank hook with a pheasant tail. It's all trout fishing stuff. (CHUCKLES) Ah, gee. Oh, wasn't he gorgeous? He was such a gorgeous wee fellow. Loved to dance and... Motorbike. I never really wanted him to be, like, a doctor or anything special. I just wanted him to have a... a very... normal... life, happy, um... Contentment, I suppose, is what I wanted. To do the things that we all expect our children to do in their lives ` have a job and maybe a family; just whatever made him happy. So that was, sort of, the life where Ashley was used to ` out in the country, enjoying the outdoors, fresh air. And here he is now locked up in a cage. Pretty damned annoying, actually. Where would you like to live? A little fishing hut. We haven't got much time left. We have to do it. We're getting older. We would like to see him in a nice, safe, quiet environment so that he's got some chance of some sort of a life, you know. We're not expecting miracles. You can't treat autism. It's a neurological disorder. But he can be managed in a place where he's got some chance. And that's what we're hoping for. Captions by Desney Shaw. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015