- Tuia i runga, tuia i raro. Ka rongo te po, ka rongo te ao, i te korero i te wananga. Haumi e, hui e, taiki e! This week on the Hui ` - SHOUTS: Nothing about us... - ALL CHANT: Without us! - The disability community is fighting back after changes to funding support. - Enough is enough. - When we go to those agencies, we need to put on our battle armour. - We meet whanau and their kaiawhina who will be severely impacted. - People don't suffer because of their disability; we suffer because of the systems that are around us. - Plus, we join the one and only Isey... - My goodness. Who's this one from? - ...as she celebrates her 105th birthday in the far north. - You're the oldest Maori lady in New Zealand, that's for sure. - Yeah, I know I'm a Maori, but I like the name just lady. - (CHUCKLES) Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2024 - Nga mate o te wa, haere mai, haere. Tatou kei te pito ora, tihewa mauri ora, and welcome back to The Hui. The disability community was blindsided when the government recently imposed changes to funding support. Christchurch mum Lorraine Wiersma knows the huge pressure on whanau caring for tangata whaikaha. Her 26-year-old daughter, Ella Grant, has a high-need disability, and requires full-time care. Lorraine is worried about how long whanau will be able to hang on in a system which is already difficult to navigate. Anei te purongo a John Boynton. - There's a brisk southerly chill as the sun rises in Otautahi. Lorraine Wiersma and her partner Victor have had just a few hours of sleep. - We're not a normal family. We are extra. And that's OK. - They're on 24-hour call for their daughter, Ella. What is one word you'd use to describe Ella? - Wow. Um... Peaceful. Peaceful. Mm. Here you go, Ella. Good morning. - What's it like when you open up that curtain and you go and greet your daughter in the morning? - It's beautiful. It's a new start. (HUMS) There you go. - Ella has severe cerebral palsy. - Your lip's a bit dry. All her major muscles are affected. Her throat is affected. Her tongue is affected. Here we go. Here it comes, darling. (ELLA GROANS) Here we go. So essentially all the muscles in her body are affected by cerebral palsy. - Ella was born in Australia 26 years ago. - They said she was blind and deaf, and they didn't expect her to live. Victor and I, because we had lost a baby before, we just said to them, 'You keep her alive, and we can do the rest.' - They brought her home at the age of two to be surrounded by whanau. - She couldn't see or hear. We wanted her to feel... ( TEARFULLY) feel us. But she's still alive. - Ella's parents didn't want her to be excluded from society. - I remember, when Ella was born, all these special places for special families, special kids, special people. But inclusiveness is the answer. - She went to kohanga reo, attended her high school ball, and recently went to pop singer Pink's concert. - I wanted Ella to have a full life. (ELLA WHIMPERS) - You're OK, hon'. There we go. - But the reality is Ella requires intense full-time healthcare. - Well done. It was really tough in the early days. I mean, she was in hospital more than she was at home. - All her medicine, food and fluids have to be given through a tube. - You're OK, love. You swim or you drown. There've been a couple of times I haven't wanted to get out of bed. (ELLA MOANS DISTANTLY) But, you know, I hear her, and I get out of bed. - Did Ella have a good night? - She was a little unsettled, like` but she was just awake. - But Lorraine's had a strong and constant support system to turn to. Donna Clark has been Ella's support worker for 20 years. - Look, it's people that know us; people that have relationships with us. That's the most important thing. - My hands are a bit chilly, El. Sorry. - Every year, Lorraine has to reapply for funding ` the funding to keep Donna as Ella's caregiver. - All right, I'll take this out, and I'll be back soon. - We write the plan, and then there's a criteria to meet. - And families all around New Zealand are facing this administrative workload. - We employ people, we train people. We pay people. We put in invoices. We're running from agency to agency ` Ministry of Education, Ministry of Health. WINZ. It depends who's on the end of the phone or who's sitting across from us. I'm not there to educate them. I want someone sitting in front of me who's doing the job to know what my children's needs are. This is a full-time job, and I don't think people realise that. - Last month, the disability ministry, Whaikaha, imposed new rules for funding. - I can confirm that carers that were accessing the funding for care services such as massages, hairdressers, pedicures or for purchasing lotto tickets, alcohol or tobacco will be impacted. - There were also fears for the funding used to cover travel, accommodation and food for carers. - We'll have a look at what's going on, Ella. - We were blindsided. - Ruth Jones and her husband, Gary Williams, run Hei Whakapiki Mauri, a kaupapa Maori-based disability support service. - Thank you. - And they know the pressures of the job. - See you. Have a nice day. - That one-hour massage absolutely is key. Or a trip to the physiotherapist is absolutely key to keep us as supporters and loved ones going. I don't want whanau to get to a place where they give up their kids to Oranga Tamariki. - A recent Oranga Tamariki report estimates up to 87% of children engaged with their services have a disability. Gary Williams knows the devastating impact of state care on disabled tamariki. - Gary has cerebral palsy, but from a young age he was identified as a gifted student. However, no mainstream high school could take him, so Gary was sent away to residential care. - Gary would spend the next 30 years in and out of state care, where he suffered physical, emotional and sexual abuse. - However, the 63-year-old overcame these dark times to become an advocate for the disabled community. - Gary received a New Zealand Order of Merit for services to disability support, while Ruth also received a Queen's Service Medal. - Families need to be celebrated when they have a disabled baby, just like any other baby that's been born. This child's a taonga. - That's where Hei Whakapiki Mauri works to empower tangata whaikaha. - I wanted to create a whanau so we could support each other to be Maori first. - Ham and baked beans coming up next. - We hang out as a whanau and we do things as Maori. We have a feed, we practice karakia. We have marae noho when we can. - Today they're meeting at Lorraine's whare. They're rallying together for a protest to combat government changes. - We do it for the people that are gonna come after us. (GENTLE GUITAR MUSIC) - Hi. How are ya? - Mwah. - It's the morning of the protest in central Christchurch. - Welcome to the Bridge of Remembrance for the Disability Fights Back. (CHEERING, APPLAUSE) - Kia kaha... - ALL CHANT: Be strong. - A vocal crowd is gathering. - They want to take away the things that we want to do with our life, and they want to make it a really hard life for us. - You deserve it, Jessica. You deserve to be cared for. (APPLAUSE) - Fight tooth and nail, because it's for us and future generations that we do this. - I don't think the government expected to have much backlash, and it just shows how vocal we can be. (ELLA MOANS) - You're just gonna feel my hands under here. - This is a massive battle for tangata whaikaha and their whanau. - Sometimes we're just keeping our kids alive. And the worry that we carry with that, that responsibility ` that's a huge load to carry. - I think of all the mamas and caregivers who are fighting and who are tired, and thinking how long, you know` they'll keep on doing it, but it's a` it's a hard road, eh. (POIGNANT MUSIC) - Ah, whakatangata, kia kaha. Stay with us on the Hui, e te iwi. Whai muri i nga whakatairanga, we'll explore further the issues facing tangata whaikaha with lawyer and disability advocate Dr Huhana Hickey. Hoki mai ano ki ta tatou Hui. Lots to discuss arising from John Boynton's story. And we did approach the minister to be a part of an interview; her office didn't get back to us. So joining us now is disability advocate and co-director of Pukenga Consultancy, Dr Huhana Hickey. Ia te uri o te Whakatohea, tena koe. Nau mai, and welcome. - Tena koe. - Why is the system so complex for those of us who are looking after their own, when we all know they can do it better than anyone else? - Well, it was` there was a solution in 1967, when Sir Owen Woodhouse presented his report, and that was going to be implemented, but a change of government meant only ACC arm of it was implemented. The medical side was never touched. And so we've been seeing is deinstitutionalisation coming into the community, that the costs are just growing and growing and growing, and there's been no effort at all made to find out how do we pay for this cost. And that is one of the problems. It's not sustainable. - So I'm` Just so I'm clear, Sir Owen was the father of ACC. - Yes. - So are we talking about something like a levy which would then take care of the no-fault accident that might happen, and therefore tangata whaikaha? - Ae. We need something that makes it financially sustainable. Draining the books does not help disabled people or, you know, the community. We need a way of doing it. So social investment appears to be one of the best solutions. And Warren Forster actually wrote a report on ACC and has offered a model, and within his report, that model could go a long way to bringing back equity, which we've got missing right now. - How would that be equitable? - Well, we would be able to implement EGL ` Enabling Good Lives ` fully ` go across the whole country. But with a levy, we can then start to sustain some of the costs that come to caring for us. But when you look at it, it still works out cheaper to keep us in the community than to institutionalise us. And that is` if you look at every prisoner, you're looking at 150,000 to 200,000 per prisoner per year. It's a lot less for us. And yet with that kind of money, we could be managing and be fully in the community, have full cares, and the whanau and that could become our carers. - OK, so let me put something to you, then. That sounds ultimately possible, plausible, practical. But is it probable... given... where we are at now? (CHUCKLES) And you know what I mean here. - I think... - Cos you're laughing at what I'm saying. - Well, our problem is politics, and it's politics that stop it. The NDIS in Australia was actually framed on the Owen Woodhouse report. And so they showed that it was possible, but they removed the levy system for that right at the beginning, just before they implemented it. So they did exactly what we did over here in Aotearoa, and took out that levy. The ability to fund it was taken out. And that is the problem. We need to be fully funded in order to be able to implement it properly. If we don't keep doing this, we're going to see people going back into institutions, back into rest homes, back into care, because whanau can't care on nothing. - Because there will be those people who are watching and listening now ` they hear 'Levy,' they equate that to tax. - Well... - And we are not in a tax world now, Takuta. - No, we're not. - You know that. So what do we do now, then? If that's not a probability, what happens? - Well, then the state needs to support by GDP, and possibly put a percentage, 1% to 3% of GDP to cover all disability funding. That isn't going to work either, because that's another form of payment that has to be found. We can't keep dropping taxes. If you look at places like Finland, they are the happiest country in the world. They have free social services. Everything is covered. We need to do the same here. That's how we used to be ` social democracy. That was the dream for Aotearoa. We've gone from social democracy into a capitalist society, and it's not benefiting those who can't keep up with the capitalism that is needed for us to function ` you know, wages, everything else. We need something that works better for us. And that would be either a levy system, GDP, a certain dedication to disability funding; some form of social investment has to happen in order for it to be sustainable and long-running. Now ACC works, doesn't it? - Yep. - And it works OK if we've` - Based on a levy system. Yep. - Yes. And it's based on the levy system. - So I'm sure this has been said to the minister. And yes, we put the expression of interest out to the minister to try and come on the programme. We didn't get a response back. So the minister has made some comments. You would have seen that in the story. - Yes. - What do you make of the response so far that you've got from the minister` the new Minister for Disability Services? - Inadequate. - Why? - Well, because it's wrong. I mean, yes, one or two people will always rort a system. You get that in everywhere. And a couple of people grabbed a bit of lotto, some gambling, some cigarettes and some booze. The majority of us` because we're all monitored, everything goes through Xero Accounting package. We know that we are being monitored for everything we spend. So why then did they not stop, and stop the people that were abusing the system instead of punishing over 50,000 of us that are desperately needing... - OK. And we could say... - ...that funding. - ...and people could say` and look, we're getting a lot of comment on social media. People watching our live now ` that will say, 'Well, hang on a minute ` new minister.' Right? Very, very short term in the job. So has there been a meeting with the minister? Has the minister sought advice, particularly from people like you? - We've tried. We've tried. - How have you tried? Talk to me about that. - Well, people have asked and called out to Minister Simmonds, but she has not been responding to anybody` any of the organisations. I belong to Te Ao Marama, which is TAMA, a Maori disability organisation. We've reached out. A lot of them have tried to reach out to her, but she's not meeting with people, which is unusual. We've always meet with the ministers around disabilities. We've always done that over many decades, and I've done that with National, done that with Labour, I've done that with every party, that there's an expectation that we meet with them and we lay out what we expect from them, and they tell us what they're going to offer. This minister has not done that. She's been a roadblock from day one. - E te Takuta, Dr Huhana Hickey, tena koe. - Tena koe. - Thank you so much for coming on the programme. Really appreciate your time. - Thank you. - Kia ora mai ra. That was Dr Huhana Hickey. If you have a story you think the Hui should cover, get in touch with us. Whakapa mai ki a maturu i te matou karere hiko. It is... That's... Kei ita tonu mai, e te iwi. Stay with us. After the break, we'll take you to a very special birthday celebration for someone who has had more than 100 of them. He huihuinga, he tuituinga. Kia ora mai ra tatou katoa. Isey Cross has never had Covid, she still has her hearing and eyesight and lives in her own home. Nothing particularly remarkable about that, perhaps, except Isey has just turned 105. Her family believes Isey is the oldest living Maori woman in Aotearoa, and reckon her secret is her upbringing in rural Karetu in Te Tai Tokerau. Earlier this month, Isey was treated to one heck of a birthday party, and Ruwani Perera was lucky enough to score an invite. (GENTLE ACOUSTIC GUITAR MUSIC) - A Kawakawa farm in the far north is where you'll find our most famous mother and son. - This is absolutely awesome. - Yeah. Yeah. - This month, Isey Cross turned 105. - My goodness. Who's this one from? - (LAUGHS) READS: 'Dear Aunty Isey, with love and... best wishes.' - 'Best wishes.' - Yeah. Oh, you got more money than honey. (LAUGHS) - It's clear to see how loved Isey is. - (CHUCKLES) - READS; 'Happy birthday wishes.' That's lovely, that. Look at that. - Any money in that one? - Eh? Oh. Wait on. - Might've fallen out. - No. - You're the oldest Maori lady in New Zealand, that's for sure. - I know I'm a Maori, but I like to be named just 'lady'. - (CHUCKLES) - And I am a lady. - You're a queen, Isey. - Oh, that's one up higher. (LAUGHS) (UPBEAT MUSIC) - And just like a queen, she's getting the royal treatment ` a birthday bash for 200 guests. - We've got a big crew today, which is good. - Celebrations are at the Waitangi Golf Club, and whanau are going all out. - She's the last of the Mohicans. And she's the best. - To stage an event like this for his adored mum is an honour for Gavin Cross. Can you tell me what she means to you, Gavin? - (BREATHES SHAKILY) Lots. - Special lady. - Both. Dad, Mum. Yeah. - Little brother James is not only Isey's full-time carer, he's also planned all of his mum's extravagant birthday parties over the years. - I run it by her, and she gives me` 'That's what I want to do.' And she gives improve, and I go ahead and do it, because she basically trusts me. (DRAMATIC MUSIC) More balloons. Some more banners in here. - Yep. - And some balloons. - Just everywhere. You happy with that? - Yeah. But this is too much. - Take that one off? - We've got the chair there, and you've got two there. And then you've two on the outside. This is the way that it has to be celebrated. I don't cut corners. - Is there any part of these celebrations that you're not involved in? - I'm the director, the producer, the artist. You name it, I'm it. (TV STATIC) SINGS: # I don't care just what they say... - James was once an entertainer who had ambitions of making it big in Hollywood. (MUSIC SLOWS, ECHOES) But news his father Charles had cancer brought James back home from Los Angeles in 1990. After his father's death, James couldn't leave his mum on her own. - SINGS: # Why do birds suddenly appear # Every time # Isey is near? # Just like James ` that's me. # They long to be... - BOTH SING: # ...close to her. - He's never been too far from her side since. - I put my mum first before me in everything I do. - To have her still here with us at this age, you know, is unbelievable. And I really credit James. Having him in her life and him caring for her all these years ` just amazing. - Isey's eldest and only daughter Lorraine Walters is grateful for all the sacrifices James has made. - I don't know if I could do it. I'm not as patient as him. He's very, very patient. - They don't make cards going past a hundred. It's been, like, over 40 years I've been caregiving, 24/7, without a break. But I wouldn't be anywhere else. - Are there any regrets that you have in your life, James, of not having your own family? - I don't need a wife to confirm` or children to` to feel complete. That'll be nice. But my mum is my leading lady always. And she comes number one. (HAIRDRYER WHIRRS, PEOPLE CHATTER) - What are you looking forward to the most about your party? - Just enjoying myself... and all my friends. - All right, Mum, how about this, eh? Mumm Champagne? (CORK POPS) Oh, fabulous. - Cheers to Isey. (ALL CHEERS) - All this cheers business ` I'd rather have a Jim Beam. (ALL EXCLAIM) - There you go. - Woo-hoo! - Preloading complete, Isey rides off in style to make her grand entrance... (ALL PERFORM HAKA) ...kicking off a glitzy evening celebrating her extraordinary life. (ALL SING WAIATA) - Thank you for coming out on this beautiful day. You know, for Mum to be 105, I'm blessed every day to have her in my life. Thank you for coming to honour my mum. 105th year old today. (APPLAUSE) - Isey boasts the unique distinction of receiving birthday messages not just from a queen, but from a king as well. - SINGS: # Will I be pretty? # Will I be rich? # Here's what she said to me... - Isey steals the show once again, just like she did starring in the 2021 home-grown hit documentary James and Isey. - A little woman like me, catching marlin. (CHUCKLES) - And how many marlin have you caught before? - All told, I think about 10. (PERCUSSIVE MUSIC) - Yay! Whoa. - Did you like the movie ` becoming an instant celebrity? - Oh, yeah. I'll accept that. I'll accept that. Yes. - BOTH SING: # Oh, hula, hula, hula to my 10 guitars... - Always the showman, James has vowed to keep planning these annual extravaganzas for his mum. - Everyone that meets her says, 'God, How old is she?' But, I mean, you look at her. Look at her. - She ain't going anywhere. - She ain't going nowhere. She's bloody amazing. - ALL SING: # Happy birthday to you. # Happy birthday to you. - His way of honouring the Kawakawa queen who has captured all of our hearts. # Happy birthday to you. # - Hip-hip... ALL: Hooray! - I'll say it again ` 105. E mihi ana e te mareikura. Hei te wiki e tu mai nei e hoa ma, coming up next week on the Hui ` (RAPID GUNFIRE) Decades had passed since the Vietnam War. How much do rangatahi know about our tupuna who went off to war? - I didn't know about this before. - Mm. Like, we don't learn this at school. - It's so important for the rangatahi to learn about this kind of stuff. - Stories of how they sacrificed their lives for a better future. - That's a big part of our history. As Maori, we're storytellers. - I think it's important to know the catastrophes of war. - The stories of our heroes that our rangatahi need to know. - Just to be acknowledged in Aotearoa for that bravery. I think it's super important. - We'll see you next week. Until then, kia mau ki te turanga o Taputapuatea. Haumi e, hui e, taiki e! Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2024