Aroha in action hui: Supporting tāngata whaikaha

[Animated graphic: Aroha in Action Family Start Hui 2023 graphic]

[Text on screen: Supporting tāngata whaikaha, Antnz Burgess]

[Text on screen: Antnz Burgess]

Antnz Burgess: 

Nau mai haere mai. Haere mai ko te kōrero oranga tino rangatiratanga, mana motuhake, tūrangawaewae o tangata whānau whaikaha. Nau mai haere mai ko te kōrero tīmatanga Tiriti ngā tāngata whaikaha, whānau whaikaha, kotahitanga, manaakitanga. Nau mai, haere mai. Kia ora. Welcome to a conversation about the overall wellbeing of disabled New Zealanders, at a time where we find our place in self-determined leadership in Aotearoa. It's also now the starting of a new time. A time where our government agencies and disabled people and their families are working together for better outcomes for our tohunga tamariki in your case. 

Ko Ngāti Tūwharetoa, Te Āti Haunui-a-Pāpārangi te iwi, ko Papaioea te kāinga, ko Enabling Good Lives Mid-Central Leadership Group. Nō Disability Reference Group, Royal Commission Inquiry into Historic Abuse in Care. Nō Disability reference groups Te Puna Aonui te rōpū. Ko Raven tōku āwhina kurī, ko Toni Burgess tōku ingoa. Nō reirā, ko Antnz ahau.

Kia ora. I hail from Ngāti Tūwharetoa and Te Āti Haunui a Pāpārangi. I live in Palmerston North. I'm on several different disability reference groups. I'm one of the founding disabled representatives of the Enabling Good Lives Mid-Central Leadership Group, and we'll get into what that is shortly. I have an assistance dog called Raven. If I have to suddenly just disappear for a second, and I disappear into my background, it is because Raven is really good at opening doors, but not so good at closing them behind her, and if she leaves the door open, I'm going to freeze. 

Welcome to my workshop.

[Slide on screen: Supporting Tāngata Whaikaha]

The name of the workshop is as you can see, ‘Supporting Tangata Whaikaha’, which is a relatively new term, whaikaha, for disabled people. What we discovered was a lot of people had historical connotations of whānau hauā, and so what we've really done was, trying to turn that into a strength-based learning process. Whaikaha means to be enabled in strength and a lot of the work done around this terminology was done by Mātua Maaka Tibble. 

The whole theme of today is promoting whānau wellbeing, the independence and resilience of disabled children through this thing called Enabling Good Lives, which is a reasonably, well for a lot of mainstream people, it's a reasonably new framework, however, it's actually been around for a little while. 

I have a small social enterprise called Antnz Ventures where I do silly things like take disabled people out into the bush and give blind people axes. The group of young people you see on the left of your screen is a group of 18- to 30-year-old disabled young people and we took them out for three days at a residential camp, just like every other kid, and for some of those guys that was their first camp that they had ever been allowed to attend. The photo up on the right-hand corner was me trying to take a classy photo with my dog at parliament, and that's what we ended up with. So sorry whānau, that's my girl, she's a bit of a goofball. 

Who am I? I grew up in Ashhurst, which is a little town just outside Palmerston North. You may have heard of it more recently because of this thing called the Manawatu Gorge and having to put a new road through there. At that time played hockey, played softball, grew up running around the awa and at the lake, although we lived in Ashhurst. Hockey player, squash player, and softball player, which is actually how I ended up injuring myself in 1998, with a quick ground ball playing shortstop. Re-injured myself in 2000 and since then I've been a wobbly walker. I've had to learn how to re-walk a couple of times now, but in 2000 ACC decided, in their wisdom, that my symptoms were psychosomatic, and they were going to remove my supports. Not an uncommon story, unfortunately. 

Between 2001 and 2009 I've periodically been involved within the Manawatu Lesbian and Gay Rights Association as a takatāpui person, helping younger takatāpui grappling with their identity and taking hold of it and moving as their best selves. 2003 was a real turning point for me. I'm just giving you an idea of who I am, because this is going to build into stuff in a minute. Back Up New Zealand was an organisation here in Aotearoa. Unfortunately, it doesn't exist any longer, but in a week, I went tramping, kayaking, scuba diving, rock climbing, paragliding, hiking. We did a whole lot of stuff and that's when I watched a guy with a broken neck pull himself up seven metres of rope and I went, “You know what? I can still kind of walk, what's my excuse?” So, I actually rang home and went, “Hey honey, can you ring the local polytech and see what adventure courses they do?” In 2007 I graduated the Diploma of Adventure Ecotourism in Palmerston North and actually became one of the first disabled New Zealanders to complete a tertiary level outdoor recreation qualification. 

2008 adult teaching. 2009 did a lot of work with Mountain Safety Council, mainly with Duke of Edinburgh programme, but the other job I was doing, like paid work, was actually with youth justice in the outdoors, so working with high-risk young offenders. In 2009 I helped design the first Code of Ethics for youth workers for Aotearoa. Actually, ran the climbing gym for the YMCA in Palmerston North. I was on a working group after the adventure industry reforms, where we were looking at guidelines and I participated in the artificial climbing structures, so that's climbing gyms and outdoor towers. Then 2013 was another huge turning point in my life. An assistance dog, Ben, got placed with me. He was the sole reason I could get out bush again by myself in 12 and a half years. Unfortunately, he's no longer with me, I have Raven, but assistance dogs are a big part of my life. 2016, unfortunately, late 2015 I had to give up the climbing gym job. I'd been contracted for 30 hours a week and working 60 and not getting the support or reasonable accommodations that I needed. 

2016 I finished a Certificate in Exercise and Sports Performance through UCOL. Kind of finished that off and in 2017 I was wondering, ‘Hey, what am I gonna do?’ and I saw an advert on Facebook that came through that went, “Hey, we're transforming the Disability Support Services. Come on down for this consultation,” and I thought it was gonna be another bullshit government tick box consultation that really just make my life, you know, but, that won’t help me at all, probably make my life harder. You know, what are we bothering to do this for? And what I found was six disabled people and their whānau actually saying, “You know what? Government wants to talk to us for a change.” So, being the big picture thinker I am, I went, “Does that see a mechanism for us to have something like the American or Canadians with Disabilities Act?” Everybody kind of went, “Mmm yeah, maybe in the very long term, but could you put your hand up for the local leadership group?” and here I am five years later, doing things like this.

At the moment, I do some delivery and training development for an organisation called Standards and Monitoring Services and we look at residential care providers, do a whole lot of developmental evaluations. I do accessibility and health and safety consultation under Antnz Ventures. I do some work with Visible, which is an organisation dedicated to the safeguarding adults from abuse response. That's kind of a upgrade from what some of the things that you do, because we identified there's a really big gap in the 18 to 65’s if somebody has a learning disability and somebody is worried about them. Like I said earlier, I'm on a couple of reference groups. The big one at the moment is the Royal Commission Inquiry, and Te Puna Aonui, which heads up Te Aorerekura, the strategy to eliminate family violence and sexual violence. 

I do a bit of event management, speaking and facilitation. I do a lot of adaptive outdoor recreation consultation.

[Slide on screen: What Am I Currently Doing?]

The reason I have, “YAAY,” there is because it is the young adult and youth group for our local Enabling Good Lives prototype. I've taken them on camps. We recently went up to the snow. We had 28 people and four assistance dogs running around on Mt Ruapehu for a couple of days. I do some work with Outdoor Training New Zealand and that keeps me in touch with my wairua and the outdoors and the Duke of Edinburgh programme. Currently I'm training to walk the half marathon in New York next year. 

[Slide on screen: Models of Disability]

These are the ways of thinking about disability that we've seen in New Zealand history to date. We talk about the charity model, which is kind of after, so we go through a phase where disability is really frowned upon, and then we go through a phase of, “The poor, disabled people need looking after and we need to pull them out of society, and they’re such a burden on their parents.” This is where some of that institutionalised thinking and things like that came from. I could spend a whole day on taking you through some of this stuff really in depth, but what I want you to do is start asking the questions. Where do I see this charity model playing out now? 

[Slide on screen: Models of Disability]

Then we have the medical model, which really, it puts the disability on the person, and makes it really personalised. “There's something wrong with you that needs fixing. We can only fix you this much and this is what we can give you. Your child will never… Your child won't…” Do people have people, people recognise these sorts of conversations? Social model and the next model we’re gonna talk about are kind of where we're at at the moment. The social model really acknowledges that people have impairments. Our impairments may or may not need medical intervention. For me, I wear a piece of plastic on my foot to stop me falling over my foot all the time, but fundamentally it's the fact that people haven't built ramps, that they don't give me a seat in a queue. They’re the things that are the barriers for me, not so much my impairment. The fact that people don't provide a quiet space if people are having meltdowns. We could talk about the fact that restraints in education would definitely not be a social model practice. A social model practise would be providing that young person a quiet space where they can decompress. 

The social model is where we get the saying, “Nothing about us without us,” and this is where things take the real turn, because all of a sudden instead of having decisions made for us, we're actually part of the conversation. Right now, we are moving into the human rights model, and this is where I come at it. Human rights. Disabled rights are human rights. We have the same rights as everybody else, so the extension to the ‘nothing about us without us; is actually, ‘nothing about us without us, because it's all about us.’ What do I mean by that? Roads, housing, education, medical, all intersect with disabled people's lives. Disability is the only minority that cuts across age, religion, sex, gender identity etc etc etc. Disabled people thread through every part of society. It's up to us to help enable their human rights, and often when we talk about safeguarding, people are thinking, “Oh, we're safeguarding people from risk.” No, no, no, no no. We're safeguarding their human rights to live free from violence. 

[Slide on screen: NZ Disability History]

Often Māori had differing views on whānau hauā in different times of history. We have to acknowledge that at times it was a survival, it was a matter of survival. That's what we had to live with, and often actually our Māori tamariki were truly tohunga tamariki and taonga tamariki, and when we're talking about models of indigenous practice, taonga tamariki is one of those parts of Te Wheke. If you haven't looked at Te Wheke, it's a great model. And what that does, is it really acknowledges the treasures that are our young people. 

Often a lot of autistic people were considered tohunga, because they saw things in a different way. Colonial New Zealand had very, very set ideas of what was going to build a better life here in New Zealand. It was a new country, a place to start a new life, and we needed good, strong people and some people made it over here, some people were already here, but as we have seen legislation against Māori, we're also starting to see legislation against disabled people, and it starts in 1882 with the Imbecile Passengers Act and the Immigration Restriction Act, which actually still continues to some extent today. A lot of migrants with disabilities aren't even looked at in the migration process because our government feels we're gonna cost them money. Disabled people and those with psychosocial disabilities, that's new terminology for mental health disorders, were often looked at as undesirables and placed in asylums and hospitals and in those sorts of places. Some disabled people were considered habitable, maybe wheelchair users or amputees or somebody who might be blind, and our society was highly, highly influenced by eugenics. Plunket has a basis in eugenics, because using Plunket was a way to weed out those undesirables.

[Text on screen: Maraea Teepa]

Maraea Teepa:

Antnz, what’s eugenics?

Antnz Burgess:

So, eugenics is, a lot of people don't realise that when Hitler started killing off people, first he started experimenting on disabled people and killing disabled people, then he moved into other categories. Eugenics is the basis of, literally, looking at a sector of society and trying to breed that out and segregate it completely from society. Thank you for the question, and that's the sort of question that I want asked, because if you don't understand this, sometimes it's hard to understand where disability is at within Aotearoa at the moment. 

[Slide on screen: NZ Disability History]

The return of our World War I vets actually had a huge impact, because all of a sudden we had these heroes that had fought and given body parts for our country, but they were also potentially now undesirables. So, we had to kind of, flip a bit of a switch there, and this is where we started seeing a more institutionalised programme come up with fixing the problems, bringing the world to those that have been injured. “Let's get them out of society. Let's look after them.” So, we’re really, really in that charity, medical model. “We'll fix what we can.” 1928 the Mental Defectives Act saw the first creation of the first Psychopaedic Institute. Now psychopaedic is a unique word to Aotearoa. If we look at it, psycho – mental, paedic - child. This is where the children's special needs schools and residential programmes really started. Many of the first community-based services are really, really grounded in parent advocacy. IHC and CCS were both started as parent advocacy services to say, “Hey, we want better for our kids.” 

Now you're starting to see the evolution of more of us disabled people going, “Hey! We actually want better for ourselves as well.” In 1985 our government decided that ‘Hey, we shouldn't have people in long term institutes. We're going to deinstitutionalise. We're gonna shut them all down and send people out into community.’ It had a big impact here in Palmerston North because we had both Lake Alice and Kimberley quite close. So, people were to be supported at home and in sheltered workshops, but the problem with that is the funding was hugely inadequate to provide true support so all we've ended up with, is basically, many institutes out in community and that's where we currently stand. I've just put the website address on there for a really interesting paper from the Office of Disability Issues where I took most of the references from. 

[Slide on screen: The Basics of Disabled People’s Communities.]

Right. Basics of our community. One in four people are disabled, one in three in rainbow communities. Disabled people are in every single section of society, until recently, hidden away. Disability is a social issue because we have not constructed society to work for all. Not everybody has the same access to places, spaces, communication and information, and community. Unfortunately, if we have a look at the social wellbeing indicators, the social wellbeing indicators for disabled people are hugely disproportionate compared to non-disabled people. 54% of disabled people currently are unemployed, compared to 8% of the general population. Most disabled people, by the time they get to my age, unfortunately, have experienced some form of abuse, harm, or neglect, including institutionalisation and systemic segregation. 

Right, 2006 something quite significant happened and New Zealand signed the UN Convention for the Rights with People with Disabilities. I call this UNCRPD because we're trying to UNCRPD the world, and I always need a catchphrase to remember things.

[Text on screen: Antnz Burgess]

What this did was, it actually puts the onus on our government to do something about their accessibility issues, and there's a lot of people in the sector that go, “You know what? If the government really knew what they were signing up to, they probably wouldn't have done it,” because it means it gives us leverage to actually have better lives.

[Slide on screen: The Basics of Disabled People’s Communities.]

At the moment, our current systems are all very, very siloed and focused on medical criteria and diagnosis. What we need is a new way of thinking and Enabling Good Lives is for everyone. Yes, it has started in the disability sector, but you can overlay it into any community that you work within. 

[Slide on screen: Potential Barriers to Services]

We're going to talk about some of the potential barriers to services, and yes, I have a wheelchair toilet sign there with stairs up to the accessible bathroom. Things like, people calling deaf people on the telephone, or sending letters to visually impaired. But we'll get into some of those sorts of things. Multi-systemic approach - disabled people have to liaise with at least four different government agencies just to get along in life. It's a pain in the backside. Family relationships can be a really big barrier, because if your parents can't get to services, how are they going to access those services for their tamariki? We've got internal bias around disability. We've also got a lot of shame around disability, particularly in our Pacifika whanau. We need to have open, courageous conversations. 

There's still a whole lot of systemic bias against disabled people. We've got sectioned and very siloed thinking of services. We discovered an education there were 21 different funding streams from ECE through to tertiary, so it’s trying to navigate all of those sorts of things. Often services forget that we're whole people. We just get treated as little bits of a person. “Oh no, this is about your budgeting problems.” “Oh no, this is a disability service.” “Mental health? Oh, nah, you're probably just depressed about your disability.” All these things lead to disabled people giving up trying to get services. 

Lack of appropriate and accessible information. If you have a mum with learning disabilities, has she got access to good information about parenting? Lack of physical access. If you have sexual health needs and you're in a wheelchair in Kapiti, you can't even get into the sexual health clinic. So, can people actually access your service, physically? The lack of knowledge and demonstration of accessible and inclusive practices is a huge barrier and so often why we hear, “And we'll get to disabled people.” And that's why I'm here, because I want to give you some skills to better work with our tāngata whaikaha, whānau whaikaha. 

Quite often, lack of reasonable accommodations and workplace adjustments. So, when I travel for conferences I take a PA, and I actually ask that as a reasonable accommodation from whoever's contracting me, because otherwise I am just wrecked by the end of the day. That could be ramps, accessible format, large print braille. There's a whole lot of different ways that we need to adjust places better. The lack of consideration of intersectionality. People assume that being disabled is the only part of your life that matters. Well, it doesn't. We're mums, dads, teachers, brothers, sisters, police, we're everywhere. Actually consider the fact that if you are Māori, disabled, a woman, you're probably at about 85% risk of being abused somewhere along the line. That's because you start stacking up those factors of those intersections of the minorities, and it adds those prejudices up and up and up. 

There's a whole lot of fear out there. There's the fear of communicating properly. What if I offend somebody by asking them, ‘Hey what's going on? How can I help you?’ Fear of how to keep someone safe, and that's the big one we see. People think that putting locks on gates, high locks on gates or locking the gate, is gonna solve a lot of problems. Well, we know from Residential Secure Services that it only adds about 45 seconds onto a person’s escape time. Risk aversion is a big one as well. You know, we're going to take the safest option, but that might not necessarily be the best option. Another big barrier is you can't be what you can't see, and as a disabled person this is a big one. Have you got any disabled parents in your service? Have you got any disabled employers, employees? And the big, huge barrier for all of you, that we fully acknowledge, is your time. You don't have enough time with the people that you need to interface with.

[Text on screen: Maraea Teepa]

Maraea Teepa:

A big kaupapa from us was, themes that came out, was access for our whānau whaikaha, that prevents access, communication, but one of our rōpū actually have interpreter for our deaf whānau based in their area. But definitely, even that having a sense of that freedom of movement from some of our whanau that have whaikaha needs and just the struggles and really accommodating our whānau. So those communication and access was huge, that prevent our whānau from accessing our Family Start programme. What about you?

Antnz Burgess:

That’s awesome. Again, it's that cultural competency and actually having knowledge out there. Accessing that information for our Pacifika whānau can be quite difficult, and even the understanding of where to go.

[Slide on screen: Current State of Play]

2011's really significant, that's when the Enabling Good Lives Report got written. What is Enabling Good Lives? What happened was Whānau Ora came out. Some fantastic principles in Whānau Ora. Some key members of the disability community bumped into Whaea Tariana Turia in a koro lounge and went, “Hey Whaea, these principles are really, really cool. I wonder what they would look like for the disability community,” and she went, “Well go and find out then.” So, in 2011 the report came out and there's five key elements. The first one is building knowledge and skills of disabled people in their whānau and our community, actually investing in our families, change in our communities, changes to service provision, and changes to government systems and processes, and we are at the start of that process. 

There have been EGL prototypes and trials running. The first was in Christchurch because we literally needed flexibility because there were no buildings, and that was a cohort of school leavers. Then there was a high and complex need cohort in Waikato, and that's currently at 270 something. Then there's a prototype in Mid-Central called Mana Whaikaha. Anybody that access disability support services was in on the new system. We designed a system for 1600 people. We now currently have 2970 something, but when we opened the doors, we had 1800 on our waiting list.

2020 the Health and Disability System Review was released, which actually said that disability support services should be devolved back to DHB's, and basically the entire disability community around the country went, “You are no way in hell gonna do that. That's not what we want.” So, in 21 there was the announcement of the Ministry of or for Disabled People and the announcement of some access legislation, and they announced the rollout of Enabling Good Lives across the country, which is huge. Haven't got to all the funding stuff yet, but we'll get there. 

Whaikaha, the Ministry of Disabled People, is going to be using the Enabling Good Lives approach to build all their services and transform their systems from here on out. We'll get into the approach in a second. Whaikaha has two functions – (1) provide disability support services funding, (2) cross government influence in policy implementation and developing all of that alongside disabled people and their whānau. Last year we had our independent international monitoring report from the UN, from UNCRPD and there's 64 different points we have to work on. One of them is around our children and making sure that our tāngata whaikaha kids are well supported. 

[Slide on screen: Key Messages from Community]

Key messages from community. I've spoken to parents, I've spoken to educators, I've spoken to service directors. Parents are doing their best. Disability’s not a parenting problem. You're there because that whānau is in crisis, and for all the parents, “Please don't send us on another fucking parenting course.” Honestly, I've heard people say that. What are the unmet support needs? Shit’s going down in that family if there's a disability going on because they haven't had their support needs met. Have they got the right respite? Have they got the right communication methods? Have they got the support that they need? Have they got the equipment that they need? Can they even get into their house? Have they got windows that little Johnny's not going to kick in? Communication needs need to be a top priority. If a young person has communication needs, whether they are deaf and need a NZSL interpreter, are they blind and need tactile? Do they have communication needs and need to be taught with, maybe, first signs or flash cards so that then we can build on using alternative augmentative communication devices such as TalkLink.

What you do now, as that whānau’s caseworker, will either drastically reduce or drastically enhance that young person's opportunities for the entirety of their life. That's a big one. For one young mother that I've known - at 19 gave birth, baby had a stroke in the womb. Young couple. Dad went, “Oh shit, wasn't expecting this,” and gapped it. Naturally, Mum's overwhelmed. She's got this kid with very, very high needs cerebral palsy. Somebody rings up and goes, “There’s this disabled kid in squalor,” because she hadn't kept on top of the housework because she hadn't been able to do all the dishes and those sorts of things, because she was completely overwhelmed. What are the unmet support needs? How about we get some home help in there? How about we get somebody to take baby for an afternoon once a week so you can actually just chill for half an hour and go and get your hair done? 

There is a huge, huge gap though, in teaching our whānau how to deescalate their kids when they're going off their rockers. That's one of the things that we're grappling with right now, as these families, they don't want that clinical behavioural modification training. They don't. Some of those parenting courses might give them a little bit of a hand, but they want tips and tricks of, “How do I stop Johnny kicking in the windows now?” because at the moment it's a three and a half year waiting list for behavioural support. If Johnny's nine now and kicking in the windows, what's gonna to happen when he's 15?

[Slide on screen: Key Messages from Community]

Disabled parents are not inherently susceptible to parenting problems. Just because somebody has a learning disability, doesn't mean they're gonna be a shit parent. I know plenty of shit parents that are fully able-bodied. I know somebody who is a fantastic father, that had to fight for joint custody of his daughter because he has cerebral palsy and couldn't pick her up. We need to stop these sorts of things. How about we have the right support in alongside that dad? How about we have some support in alongside the epileptic mum who OT, I've had parents who have been threatened of their kids being uplifted because mum's epileptic and what happens if she's having a seizure and bathing baby? We need to stop thinking those ways and thinking - how do we support that parent to actually parent in the best ways possible? Well supported homes are safe homes. 

This was the best way that I could actually put somebody's response was, “Keep them out of bloody residential care.” I asked them, “What's your key question for, key message for OT workers?” Try and keep people mainstreamed as long as you can. Uplifting is a last resort for a reason. Encourage those whānau to get their young ones out to playcentre. They might be going, “Oh but playcentre doesn't know how to deal with the risks.” Well, that young person has a whole lot of other young people who are the best inclusion practice people on the planet, and some of the best health and safety managers, called their peers. As soon as somebody goes into care, we know that getting them out is so, so much harder. So that mum who had the baby that stroked in the womb has never had her child back. 

We know through the Royal Commission that the care to Corrections pathway is strong. Once you segregate somebody, getting them unsegregated is really, really difficult. The other key message from our community is when whānau are involved in wider community, it enhances those natural relationships and wellbeing, because we can go, “Hey cuz, do you mind looking after Johnny for half an hour while I go and actually pick up my prescription,” or ring the coach go, “Do you mind picking him up from practice or dropping him home?” Those natural relationships are huge.

[Slide on screen: Enabling Good Lives Vision]

Enabling Good Lives vision - in future, disabled people and their family have choice and control. That's the basics of it. We want to be able to actually make those choices in our lives.

[Slide on screen: Principles]

The reason I have a picture of me doing my 10k there, is because Achilles, without even realising it, represents these principles really, really well. Self-determination is our first principle. People should be able to determine how they interact with your service. People should be able to determine what they eat for breakfast, when it gets down to it. The other thing around self-determination is around informed consent. People can't actually use informed consent and self-determination if they don't understand what's going on, and that is a huge issue for a lot of our whānau, particularly with impairments because our literacy rates are so low. 

Beginning early - and this is why I'm so pleased to be doing this session because you can't get much earlier than zero to six. The sooner we get supports around people the better. The second thing about beginning early, is that we need to begin with aspirations. Parents of disabled children hear so much around what their kids won't do, what they can't do and what they'll never do, that we actually need to say, “Hey, what do you want your kids to achieve? What do you want to achieve as a whānau? Person-centred.” We mean person directed, but that's gonna take, we have to put a whole Cabinet paper through and that's a good 18 months.

[Text on screen: Antnz Burgess]

That whānau should be in the centre of what you're doing with them. There is no point making a really good plan for a whānau and not actually talking to them about it, and that's often what happens in our sector because people think that they're experts in disability. The parents and the whānau are the experts with what's happening with that young person in their lives. 

Ordinary life outcomes - disabled people should be hitting the same milestones as other people. I’ve had, a friend of mine was like, “My child, she's wanting to leave her special needs unit.” I'm like, “Well, how old is she?” She's like, “18.” I'm like, “Well.” Because you can actually stay at special needs units until you're 21, and that's when transition usually happens, and this mum is like, “No, but I want her in the unit.” It's an ordinary life outcome that she should be out doing, flatting and all that kind of stuff.

[Slide on screen: Principles]

Mainstream first. I want to see this one called universal access. Everything should be accessible - places, spaces, information, communication, and community, and you will hear me say those five things over and over and over. The other thing that happens with Mainstream first is we need to acknowledge twin track programmes. So kaupapa Māori programmes where they're needed, Pacifika programmes where they're needed. Deaf people far prefer to work with deaf whānau because it's a cultural way of thinking. In the adult space, Te Aorerekura is your mainstream prevention method, but our safeguarding adults from abuse response is our twin track specialist response. With this, as well, also goes along with, do we need supported decision-making people in alongside us if our disabled parent has a learning disability, so we know that they fully understand what's going on? 

Our next principle is mana enhancing. As Māori, some people go, “Oh you can’t enhance mana.” Mana is inherent, yes. You can't add to it and take away from it, but what we're sick of seeing is people coming out of services feeling worse about themselves than when they go in. Give people information, give them connections, try and uplift them a little. Say, “Hey, can I pass your number onto the Down Syndrome Association?” for instance. Parents are too frazzled to go look up another number. Be that intermediary and their advocate if you need to be. 

Easy to use - do I need to speak a whole lot about this one? If our systems aren't easy to use, people won’t access them. Stop ringing deaf people, stop sending blind people letters, stop making me fill in the same form every two years to say that I still have cauda equina. Those sorts of things. 

Relationship building is the key to it all. Whanaungatanga. Yeah? Do I need to say much more about that? No, because when people are connected, we know that things work better.

[Slide on screen: Relationship & Resource Building]

But what I did do is put together a bit of a brainstorm around ways for you to expand your relationships and resources in your community.

Maraea Teepa:

What I loved about your kōrero Antnz, is that you gave us some tips and tricks and those honest conversations. E te whanaunga, Antnz, tēnei te mihi ki a koe i whai wāhi mai ki tō tātou wāhanga.

[Animated graphic: Aroha in Action Family Start Hui 2023 graphic]

[Text on screen: Presented by]

[Graphic: Tākai logo]