Chat 21 - Winter 2023

CHAT 21

ISSUE 94, Winter 2023

ISSN 2744-4627

A journal about & for the New Zealand Down syndrome community.

Kia ora, and welcome to this special Election 2023 edition of Chat 21! It’s not long now until Saturday 14th October, when every New Zealand resident aged 18 and over has the chance to cast a vote. Thanks to our Mixed Member Proportional (MMP) electoral system, every single one of those votes will count, and we’ll have the chance to vote for our political party of choice as well as our choice of who to represent us in our local area.

We are proud to bring you a special Election Selection in this edition, including an exclusive interview with the Minister for Disabilities and the Disabilities portfolio holder from the other three largest political parties in our current Parliament. The Honourable Priyanca Radhakrishnan (Labour), Member Maureen Pugh (National), Member Jan Logie (Greens), and Member Toni Severin (ACT), all generously took the time to speak with me about their parties’ policies and records on disability rights and some of the key issues facing the Down syndrome community at this election.

Also featured in our Election Selection, is our very own Easy Read Election Guide, a special report from the STRIVE and STEPUP crew, bonus questions for our politician interviewees, and two wonderful quatrain poems composed by Andrew, Vinnie, and Duncan on the topics of voting and our Prime Minister.

Have you spotted anything else special? If you’re reading a physical copy of this, you can’t help but notice we are in FULL COLOUR!

A big thank you to Zandra and the NZDSA leadership team for making the call to provide extra funding for this! We’d love it though if we could make this change permanent without taking away budget from anything else. SO – if you or someone you know works for or runs a business that might be keen for a great advertising opportunity, tell them to give me a buzz at editor@nzdsa.org.nz so we can keep enjoying our wonderful community news and updates in the full rainbow spectrum! In addition to our exciting Election Selection, we also bring you loads of your favourites – Down Write Brilliant, On the Socials, Around the World, updates from Champion Centre, UpsideDowns, Zandra, Kim, the IHC Library, and stories and images from loads of our members. We celebrate 10 years of the Music and Fun Playgroup in Auckland, and the many sporting successes of our Down syndrome whānau – honestly, there were just so many it was hard to squeeze them all in! Special Olympics, Virtus Games, Hamilton Summer Games, cycling milestones… look out sporting world!!

So get yourself a hot drink, find your favourite Oodie, and light a fire in your belly with our Winter Election Special edition of Chat 21!

With Finja and Zoe at the Music and Fun 10th birthday celebrations

Around the World

Los Angeles, USA: Barbie film premiere

With the upcoming film released this winter, Barbie is EVERYWHERE, which is why it’s such great timing that Mattel released their first Barbie with Down syndrome this year. At the LA premiere, actress Sofia Sanchez (14), dressed as the Barbie on the red carpet with a custom-made gown, shoes, and jewellery that perfectly matched the new Barbie she brought along with her. The Ukrainian-American will soon be on the red carpet again as one of the stars of the upcoming Hunger Games prequel.

Brisbane, Australia: Time to get preparing for World Down Syndrome Congress 2024!

Registrations and the call for abstracts are now open for next year’s World Down Syndrome Congress. This time, it’s just over the ditch in Brisbane! The hosts are excited to invite the world to their home town. Their website states “Preparations are well under way to deliver an educational and informative event that brings together leading international experts and advocates in a broad range of fields, as well as the opportunity to experience Australia with its unique wildlife and environment.

The Organising Committee is also preparing an exciting social program to bring you the best of Australian music, culture and cuisine.”

Ontario, Canada: Here I Am photo series explores aging and Down syndrome

Canadian photographer, Hilary Gauld, and the Canadian Down Syndrome Society (CDSS) have teamed up to create a beautiful photo series that challenges the misconception that people with Down syndrome don’t live into old age. With the life expectancy doubling in Canada (and here!) over the past 40 years, Gauld says “After photographing Canadians with Down syndrome for almost a decade, I felt it would be a valuable project to explore aging and Down syndrome and to challenge the misconception that people with Down syndrome don’t live into old age. They very much do and where they go and live changes as they get older.”

On the Socials

Open Future Learning on Tiktok — @open_future_learning

If you’re in the mood for a laugh, check out some of the videos from this group. Although their content can be quite specific to the UK context, there’s certainly enough to relate to! Many of their videos star people with Down syndrome and satirise some of the more ludicrous expectations out there. Highlights include videos with a giant pill prop, a conversation conducted entirely in acronyms, and ‘Different Types of Disability Support Staff’.

What would you do? On YouTube

This channel is based on an American TV show that has actors do all kinds of out-there things to see how the strangers around them react (the strangers don’t know they’re being filmed until it’s revealed to them later). They’ve had a couple of videos over the years involving an actor with Down syndrome. It’s heartwarming to see a vast array of people reject some of the harmful stereotypes and misconceptions around, and often entertaining to see their reactions when the cameras come out of hiding! This one comes with a viewer warning though – the actors who play the baddies use some terrible language as part of the act.

San and Zen on Instagram - @zen.11.21

Adorable children and an ENORMOUS fluffy white dog – honestly, I defy you to not love this one. This Japanese account follows the adventures of two kids, the youngest of whom has Down syndrome, and their Pyrenean Mountain Dog. My distant memories of Year 12 Japanese are unfortunately not enough to figure out who is San, who is Zen, and if these are the children’s names or the dog’s name is there somewhere too. Either way, it’s well worth a look, but tread with caution if you’re feeling clucky (for dogs or babies).

VIRTUS GAMES

A Night at the Movies

The team at UpsideDowns loves a trip to the cinema, so when one of our members suggested we host a fundraising screening to support our work, it was lights, camera, and action!

The UpsideDowns member in question happened to be Briar March, acclaimed local filmmaker behind some powerful recent documentaries. Briar’s films have covered important topics like climate change (There Once Was an Island), housing rights (A Place to Call Home), and nuclear disarmament (Mothers of the Revolution). For our Movie Night, she offered to screen her inspiring 2022 documentary, Dame Valerie Adams: More Than Gold.

The film follows Olympian shot put champion Valerie Adams on her journey to compete in the Tokyo 2020 Olympic Games. Dame Val is one of the country’s best known sporting personalities and a role model for young sportspeople who have to overcome challenging circumstances to succeed. It’s a story of determination, perseverance, and aroha — a perfect match to the values of our little charity.

Briar kindly offered to hold a Q&A session following the film and Auckland building company Our Projects generously agreed to sponsor the event, so it was shaping up to be a night to remember. All we needed was a place to show the movie. Fortunately, Auckland’s iconic Capitol Cinema on Dominion Road was able to squeeze us in amidst a busy season of film festivals. Built in 1923 in a beautiful neo-Greek style, the Capitol Cinema is a film culture mainstay in Auckland and UpsideDowns is thrilled to now be a tiny part of that history.

A wonderful film and a beautiful screen should usually be enough to pull in the punters, but we wanted to make sure we had plenty to lure people out of their homes on a dreary midwinter evening. Luckily, UpsideDowns’ local business supporters came through in a big way. We were able to offer a goodie bag with every ticket, which included treats from The Baron, Cookie Time, Giapo Ice Cream, Honest Chocolate, and McPherson's beauty products.

We also held a post-movie raffle, with awesome prizes from Eden Park, Mineral Wines, and Kiss Kiss eatery (a neighbour to the Capitol).

With all that sorted, it was time to sit back and enjoy the show. If you haven’t yet seen More Than Gold, we highly recommend you do (it’s currently streaming on Neon TV). The film gives a candid glimpse into the often challenging life of a legendary sports star who pushes past limiting expectations about age and motherhood. It’s sweet, sad, shocking, and triumphant — one to watch with the whole family. Following the film, the audience was treated to some wonderful yarns from the director about working with Dame Val, the challenges of shooting during the pandemic, and amazing journeys promoting the film around the Pacific. We also got to hear about Briar’s next project; a short film about the relationship between a mother and her daughter with Down syndrome called I See You. Sounds like the perfect film for UpsideDowns’ next Movie Night!

UpsideDowns is a charitable organisation providing funding for speech and language therapy for Kiwi kids with Down syndrome – visit www. upsidedowns.co.nz to stay up to date with future events.

IHC’s 2023 Election Forum

Are you a disabled voter seeking to make your voice heard ahead of this year’s election?

Come along to IHC’s 2023 Election Forum featuring politicians from a range of parties. Designed specifically for disabled voters like you, this free event is a great opportunity to share your concerns and perspectives. Drinks and nibbles will be provided.

Every voice matters, and we need yours!

You can send questions for politicians on the panel ahead of and during the event by emailing us at advocacy@ihc.org.nz.This event will be streamed online. We will also have sign language interpreters and it will be live captioned.

If you have any specific accessibility needs or questions, please email advocacy@ihc.org.nz. Please feel free to wear a mask. If you’re ill, please stay home and watch the livestream.

Where: Te Wharewaka, 2 Taranaki Street, Wellington

When: 4pm on Wednesday, 20 September 2023

Register here:

https://ihcnewzealand.eventsair. com/ihc-election-event-2023/electionevent

This event is hosted by IHC New Zealand in partnership with:

Getting election ready

By Sarah Paterson-Hamlin

Saturday October 14 this year is Election Day in Aotearoa New Zealand. It’s important as many of us have our say as possible so we can be represented well for the next three years, including people with Down syndrome. Check out our Easy Read guide to the voting below. If you have more questions, you can phone 0800 36 76 56 for free.

Our New Zealand Government New Zealand is led by a Prime Minister and 119 other Members of Parliament (MPs). This is our current Prime Minister, Chris Hipkins.

These MPs are in groups called parties. Each different party has different ideas about lots of different issues in New Zealand. For example health, education, climate change, money, houses, and crime.

In New Zealand, our MPs are currently in 5 different parties. They are Labour, National, Green, Act, and Te Pāti Māori (The Māori Party).

Together, these 120 MPs pass laws and organise things like our health and education systems. Their job is to represent and listen to all of us here in New Zealand, including people with Down syndrome.

Stuartyeates

Voting in an election

Every 3 years, people in New Zealand choose who they want to be MPs. This is called voting in an election.

EVERYONE who is 18 and older and who is enrolled can vote. If you want to enrol or check if you are already enrolled, you can visit this website: https://vote.nz/enrolling/enrol-orupdate/enrol-or-update-online/

When you vote, you get 2 choices. First, you can choose your favourite party. Second, you can choose the person you want to represent the area where you live. This is called an electorate. Both choices are completely yours to make.

If you want to, you can choose someone for your electorate who is not in the party you choose. For example, you can vote for the National Party and for a person in the Labour Party for your electorate. It’s up to you!

On election day, you can vote any time between 9am and 7pm. There are lots of places to vote on election day, like schools, churches, libraries, and community centres. Just look for the orange signs.

Toni Severin, Disability Issues Spokesperson, ACT Party

By Sarah Paterson-Hamlin

Although contact with NZDSA was new for her, Severin does have personal experience when it comes to the Down syndrome community.

“I do have a godson with Down syndrome. I haven't seen him as much as I'd like to in the last three years, and it's just amazing how quickly he has grown from a little boy to now a teenager. My husband had an aunt with Down syndrome. [ACT List MP] Simon Court, his youngest, Louis, has Down syndrome. So, our whole caucus is quite familiar with children and adults with Down syndrome.”

Severin also has lived experience of a learning disability, having been diagnosed with dyslexia at the age of 21. Identifying learning disabilities within the education system is one area where she sees the biggest need for change In Aotearoa.

Toni Severin is a List MP for the ACT Party with the Disability Issues, Corrections, and ACC portfolios within her party. She is nearing the end of her first term in Parliament and lives in Christchurch East with her husband.

Severin describes that the day to day of this role involves shadowing the Government’s work as it relates to her portfolios, sitting in on select committees, answering questions from people who get in touch with her, and helping where she can.

“I also write what we call parliamentary written questions. So, if somebody [else in the ACT Party] sends me something, and I think, well, this is a little bit odd, I can see if there's answers that we can get from the Minister for Disabilities.”

“There are great teachers out there that identify [learning disabilities]. But also, with all the teachers that I have spoken to, or even the trainee teachers, a lot of them don't get any training on it. I'm also a big mover to really look at how they're teaching reading. And that's what Speld and Mike Stiles is trying to push with a petition. This has been left too long, and we're now reaping the consequences, because if you haven't been picked up, if you're now an adult, where are you? Are you gainfully employed or are you struggling or are you in prison?”

When asked about her opinion on the Government’s Budget that was released this winter, Severin’s main concern was how the new Ministry Whaikaha was spending.

Some of the language in this interview has been altered slightly for clarity and to fit with NZDSA’s editorial guidelines

To my mind, what Whaikaha should ideally be working out is what are the needs, because we know they are very vast. But we still need to know what is happening with all that money that has been given.” One of ACT’s policies is disestablishing the Human Rights Commission. I asked Severin what this might mean for people with conditions such as Down syndrome, when the Commission works in areas such as accessible housing, employment rights for disabled people, and inclusive education.

“I’d hope that Whaikaha would be the one-stop-shop and take on that role. They should be the ones that should have a little bit more power around housing design, as well as employment, but also listen to all groups, because I know some groups have been shut out.”

The ACT Party is founded on principles of reducing the size and scope of Government, so would a Government with ACT as a coalition member consider disestablishing Ministry Whaikaha or reducing its scope?

“We would like to know what they're doing, and what their basis is because at the moment, they’re a year old, and I know that they're still establishing themselves. If anything, we just don't want it to be a tokenism ministry, we want it to actually work for the disability communities, and listen to all because you know, [some groups have] bigger representation, have ‘the ear’ as I have understood, for many years.

stating that she sees “most of that as being pretty good.” However, she pointed out that it was still early days.

“We also know that one size does not fit all. So, we have to make sure that Enabling Good Lives is actually working for those different areas.”

The unemployment gap for people with a disability is a significant one, and it is even more serious for people with Down syndrome and similar conditions. ACT has a welfare policy to introduce Electronic Income Management. This is where people receiving a benefit have their spending controlled via the use of an electronic card. Their website states, “it is not the recipient’s money. It is taxpayer money and has always been given under a range of conditions such as seeking work.”

Member Severin was cautiously positive on the principles of Enabling Good Lives that underpin the Ministry Whaikaha,

“We would like to know what the Ministry Whaikaha are actually doing with the money and budget.”

“We need to be all inclusive, and some groups might not like each other. But we have to include everybody, because we need to hear everybody's voice.”

I asked Severin what this might mean for people who face serious barriers to employment, such as those with Down syndrome, and whether this would represent a restriction of freedoms and choices that Enabling Good Lives seeks to move away from.

“It’s not so much for the disability community, it's more for the more ablebodied people, especially around those that are not necessarily taking employment when they could, those that you know, are short money all the time, constantly going back to WINZ asking for top-ups because they can't afford the power etc. because we know that the disability community's needs are different, so it's more around, you know, the unemployed, those on the child support benefits and all that sort of stuff.”

A few hours after our interview, Severin called me to let me know she’d taken the query back to her colleagues and confirmed that the policy was not aimed at disabled people.

Written by members of STRIVE and STEP-UP

We also discussed education, and ACT’s plan for a Teaching Excellence Award scheme. Given recent calls from teachers’ unions for funding for classroom support rather than their own pay necessarily, I asked if a Teacher Aide Excellence Award might also be on the cards. While it isn’t currently, Member Severin did write it down enthusiastically to take to her team. As one of very few MPs with a known learning disability, Member Severin had these words of inspiration for Chat 21 readers.

“Well, one thing I've learned is that we're all able, and we've all got abilities, and it's just a matter of recognising our abilities, and being able to use them to our full potential. It's identifying our superpowers and using them, and not to give up. I think you need to find what you love – the passion.”

Vote on the 14th October

We all have the right to vote.

Article 29 in the United Nations Conventions on the Rights of Disabled People says we have the right to be involved and taking part in politics. Voting in general elections is really important to us because we get to decide who and what we vote for.

It is important that people do not tell you who to vote for – voting is private and your decision.

You have the right to have an assistant if we need additional assistance.

How can you get involved in politics?

You can watch television to see what politicians are doing for people with Down syndrome

Read about information in the newspapers. You can join the IHC online Election Forum on the 4th September. The NZDSA will share the link in Enews.

Jan Logie, Disability Spokesperson, Green Party

By Sarah Paterson-Hamlin

Jan Logie has been a Member of Parliament for the Greens since 2011. Originally from Invercargill, she studied at the University of Otago and now lives in Porirua. As well as being party spokesperson for disability, she also holds the ACC, Child Poverty Reduction, Children, Public Services, Te Tiriti o Waitangi, Women, and Workplace Relations and Safety portfolios. Logie explains that all her portfolios connect, and that she tries to incorporate the interests of disabled people in everything she and her colleagues do. “We work with disability organisations, firstly through the Inclusive Greens within the Green Party - which is super helpful for guiding me in my work, because

…the way I try and approach the work is consistently

For me, as someone who doesn’t identify as having a disability, it means that I’m trying to ground everything I do with people who have lived experience.” She also spends as much time as she can working with organisations such as Access Matters and People First, for example when it comes to the Accessibility legislation that is currently going through Parliament.

“My very first term in politics I did a tour around the country with a colleague around economics and politics and how do we change so the systems work for all of us? People First had a speaker at every single one of these events about the rubbish reality of working a full-time job and still having to deal with Work and Income - the lack of respect.

When I go around the country and touch base with communities, I’ve been trying to go out and meet with different disability organisations and providers to try and get that sense of the national voice as well as local issues and realities.”

Highlights for Logie from the recent Budget include the removal of the minimum wage exemption and extensions to Total Mobility. She was, however, concerned that the new Ministry Whaikaha wasn’t receiving the funding it needed to achieve its remit.

“I really want to acknowledge that from a government’s perspective it’s a really critically important piece of work and it is complex, but I worry that we’re not yet seeing the kind of drive to get the changes in place and deal with some of those gnarly issues.”

‘nothing about us without us.’

She’d also hoped to see more in the way of increases to benefits for those living with disability.

“We have so much evidence in terms of the impact of poverty and how entrenched that is for disabled people and families impacted by disability, that I am really gutted that we haven’t yet seen anything specifically to address those levels of poverty for disabled people.”

Within her ACC portfolio, Logie is keen for reform. She points out that when ACC was initially established, it was set up as a first stage, with the idea that ultimately all situations where rehabilitation, social support, income compensation and other things would be covered, not just when a specific accident was the root cause.

“We know the boundaries of the scheme are imbedding inequities by the cause of disability and also that disabled people are struggling to access the scheme for

genuine accidents. The number of stories

I’ve seen where people’s injuries have been overlooked because of assumptions and biases within the health system, or they’re told – far too often on dodgy medical grounds – that it’s somehow connected to your condition. Which I do not believe is consistent with how the scheme was intended or the public good, let alone the rights of the people involved.”

Logie has spoken passionately in the past about the need to enforce the rights of disabled people and has several ideas as to how this could be progressed.

“I support the need for there to be more social marketing to address discrimination. I think there’s a lot of work to do as a country in terms of getting our heads around the value of diversity in lots of different ways.

Recognising people with Down syndrome might also be Māori or Pasifika or women or queer and there’s intersection. As a country I think we’re coming to that point where we’re getting ready to have those conversations.

“Looking at the Accessibility legislation that’s going through parliament at the moment, [the Greens] are supporting the call for standards to be able to be set and legally enforceable, because even where we’ve got them they are unenforceable. Our schools are supposed to be inclusive by legislation for example, and yet…

“The ERO report on the inclusiveness of our education showed that it’s not necessarily about the amount of money that the schools have because poorer schools are showing that they are often more inclusive - I feel like that needs to be repeated often. There was that recommendation for an independent oversight, and I think that’s really important, because this has just drifted for decades.

“Our building code is the same. Accessibility standards are not being met because there is no consequence. And

I get that you don’t necessarily jump to consequences before you’ve done the education, but we’ve been having this conversation for a very, very long time, and when some are doing it and others are not, that really starts to look like a conscious choice, and that sits very badly with me.”

The Greens are predominantly known for being an environmentalist party, so I asked Logie how environmentalism supported people with Down syndrome.

“This is a little bit of a weird answer – but I think in terms of us and environmentalism, it’s about recognising that the world is an ecosystem and humans are part of that, and an ecosystem needs diversity. So that means that when we’re looking at communities and people, that’s also part of our thinking – how do we support this diversity to thrive – as opposed to shutting things down or having a one-size-fits-all.

“So, I think our environmentalism is part of why we’re so passionate about this work [in the disabilities sector]. We want everyone to be a part of this work towards a future where we’re living in balance, avoiding catastrophe. Then it’s the smaller things like making sure there are walks in nature and people can get into wild spaces that are accessible to a range of people’s needs and that the information about that is in a format that people find understandable. It’s about that integration of it all.”

When it comes to the new Ministry Whaikaha, Logie was hopeful, and keen to see it develop further.

“I think it’s a really crucial important step. I’m really hopeful about it. My concern is whether it is independent enough. I have so much respect for the CE [Paula Tesoriero, former Disability Rights Commissioner] and have great experiences of being at the other end of her advocacy when she was at the Human Rights Commission. That work of being that person to champion change across the public sector from the inside is useful, but I do worry a bit in terms of the roll out of Enabling Good Lives and the role of system change and monitoring. How do you monitor yourself?” Logie described her ideal election result as being a strong Green Party with around 15-20 MPs supporting a Labourled Government. If that happened, she had high hopes for what her Party could deliver for people with Down syndrome.

“Inclusion and equity are at the heart of Green Party values and kaupapa. Government has a huge amount of work to do to remove the barriers to living a full life that are currently in place. That is something that is central to our thinking.”

Te Pāti Māori

By Sarah Paterson-Hamlin

We had hoped to bring you an interview with the disabilities portfolio holder from all five of the current parliamentary political parties. Unfortunately, Te Pāti Māori did not respond to our invitations, and as they are the smallest parliamentary party with only two MPs, they do not have allocated portfolios in the same way as the larger parties.

In lieu of an interview, we have pulled together some of Te Pāti Māori’s policies currently available for Election 2023 that relate to disability and located quotations from their two MPs and co-leaders. Income and welfare policies

• Double baseline benefit levels,

• individualise benefits,

• remove financial penalties, sanctions, and work-test obligations, including repeated proof of disability or sickness.

“The evidence is overwhelming that incomes are inadequate for many people, both those receiving a benefit and those in low-paid work. Current levels of support fail to cover even basic costs for many people, let alone allowing them to meaningfully participate in their communities.”

Education policies

• Fund free digital devices and free internet for all children from Yr4 – Yr13

• Remove the power of schools to expel any student younger than the school leaving age of 16

• Establish a Māori-led taskforce with the mandate to transform how Māori students with disabilities and learning differences are taught and supported.

“Excluding children from school does irreparable harm - 51 per cent of all prisoners were kicked out of their schools as children. The education system must be responsive to the needs of all students, not throw up its hands and leave young people to fend for themselves.”

“The education system has completely failed to support tamariki who learn differently and have extra accessibility. Four in ten disabled Māori adults had no formal educational qualifications – almost double the proportion of non-disabled Māori.

We know that there needs to be greater resource for funding support teachers and appropriate facilities and ensuring professional development for educators.” Co-leader quotes Rawiri Waititi, Parliamentary debate, June 2022: “Around 26 percent of Māori identify as disabled, 40 percent of the Māori adults with disabilities have no formal education qualification, almost double the proportion of non-disabled Māori. We need to massively overhaul funding for support teachers, appropriate facilities, and professional development for all teachers.”

Debbie Ngarewa-Packer on steps of parliament to disability rights advocates, March 2021: "We saw the pain that the whānau went through to just give her [Ngarewa-Packer’s niece) the beauty of freedom and dignity…To all of those of you here today that teach us in every way, what discrimination takes away, and the opportunities they don't afford for the absolute magic you have within you."

Fun Election Facts

Current disabled MPs include Golriz Ghahraman of the Green Party who has multiple sclerosis, Toni Severin of the ACT Party who has dyslexia, and Chlöe Swarbrick of the Green Party who has ADHD.

New Zealand sign language (NZSL) became New Zealand’s third official language in 2006. This year was the first time a Government Minister, Priyanca Radhakrishnan, communicated in NZSL in Parliament.

In 1893, New Zealand became the first country in the world to allow women to vote.

The National Party MP for Invercargill, Penny Simmonds, has a daughter with Down syndrome.

New Zealand’s first deaf MP was Mojo Mathers, elected in 2011 for the Green Party.

Maureen Pugh, Spokesperson for Disability Issues, National Party

By Sarah Paterson-Hamlin

Today, she is the National Party’s spokesperson for disability and carers, and also holds the community and voluntary sector portfolio. Putting disability and carers together in the same portfolio is something that was only introduced in the National Party in January of this year when Pugh took over the role.

“From a National Party point of view, the two roles are intertwined and inextricably so.”

Being relatively new to the role, Pugh works closely with her predecessor, who has a close connection to the Down syndrome community.

“My colleague, Penny Simmonds, she herself has a Down syndrome daughter, and so we still work very closely together… I think between the two of us, we will be able to make some really good, positive inroads.”

Pugh describes the disability and carers portfolio as “a much bigger portfolio than I thought it was going to be, because

Maureen Pugh has had one of the bumpier rides to being a Member of Parliament. Two elections in a row, in 2014 and in 2017, despite what initial results indicated, she ended up just missing out on being a List Member for National. But then in 2016 and again in 2018, she did end up as an MP when she replaced MPs who were leaving. This led Pugh to describe herself as the ‘yo-yo MP’! But in 2020, she had a much higher list ranking, and came into Parliament without any further yo-yos.

there are so many strains to it, from intellectual or mental disability through to physical disability, and even temporary disability through accidents for example…

We’re talking over 20% of the population of our country.

So it’s not insignificant in terms of the people that it impacts, especially when you consider the flow-on effects within a family or within a wider whānau group.”

Prior to her time in Parliament, Pugh was a Councillor and then the Mayor of Westland. Through that role in local government, she came into contact with people in her community with Down syndrome and other disabilities. Discovering the work of nation-wide networks such the New Zealand Down Syndrome Association has been an exciting learning curve for her in more recent months. Pugh’s earliest memories of disability were of her intellectually disabled uncle, and her grandfather who became paraplegic in a mining accident before she was born. He later learned to drive with a special all-inone clutch, brake, and accelerator.

“I’ve still got that mechanism that he had to be attached to cars!”

Regarding more recent developments, Pugh agrees with Chris Ford’s assessment that the 2023 Budget released this winter by the Government “only does just enough but no more for disabled people.” Although she appreciates any government faces a gap between what they’d like to do and what they’re able to do because of financial constraints, she spoke to some of the other options available.

“I’ve had some very good conversations with people about some of the nonfinancial support and changes that could be made, simply around committing to not increasing barriers when anything is being decided. We’d like to make sure we’ve got that target of 15% accessible homes which looks like it might be getting to the target, but that’s not all there is to it. There’s very simple things, like a brand new pedestrian crossing being installed right behind the beehive. But when the light goes green, there’s no sound telling people that you can cross the street… These are the sorts of things I’m talking about.”

As Kim points out in her President’s Pen this season, the Down syndrome community has not been immune from disagreement regarding COVID-19 vaccinations. This is something Pugh has also had a journey with, being described by media as a “vaccine holdout” after being one of the last MPs to get her vaccine, several months after they became available.

She discussed her initial decision not to get vaccinated and then her ultimate reversal of that decision in order to be able to do her job.

“I think the division that has happened in this country as a consequence of the mandates and still happens has been heart-breaking. And I saw many cases in public meetings that I’ve been to where families have been divided, because of the fear that was created around COVID. And I think ruling by fear is a cruel way to manage anything… It has been a very divisive time in New Zealand’s history.”

The National Party has released their ‘Welfare that Works’ policy, which includes Job Coaches, intensive support for Jobseekers, and sanctions. This last aspect of the plan in particular has drawn significant criticism from disability advocates such as Jonathan Mosen, the Workbridge CEO, who describes it as unfair “to sanction disabled people for other people’s misconceptions.”

Pugh has a more optimistic view, responding that it would defy common sense for disabled people to experience these sanctions “and I doubt very much whether we’re going to do away with common sense.”

This existing lack of common sense within the Ministry of Social Development is something she particularly took away from the experience of being on the select committee for the Accessibility for New Zealanders Bill.

“We had a young man come in and talk about having to get a doctor’s opinion every year [for Disability Allowance]. He says, I’m an amputee, my leg isn’t going to grow!”

When it comes to this Government’s removal of the minimum wage exemptions for disabled people, Pugh was disappointed in the move. She spoke warmly of visiting Kilmarnock Enterprises in Christchurch. “They are not there to exploit or to make profit, or, you know, unreasonable profit, because everything comes back in to supporting the people. And so, when you do away with [minimum wage] exemptions then you put those places at risk. So, we’ve been very supportive of places like that, those social enterprises that support people.

“I’m very keen to make sure that [social enterprises] are recognised for the work that they do and the work that the employees do, like the Down syndrome people that work there, is also valued. But we also need to understand that they will never have the same production as someone who is able-bodied or ableminded would be able to contribute. So, it’s fair reward for fair effort. And I think we do a real disservice to places like that in terms of the social interaction that happens and the learning that goes on.”

In New Zealand’s MMP electoral system, any National-led Government is likely to need the support of the ACT Party, just as any Labour-led government would need the support of the Greens and potentially Te Pāti Māori. With ACT having discussed reducing or eliminating a number of Ministries, it was important to seek clarification from Pugh on this issue.

“If you’re talking about wasted expenditure then that’s very much where we will go, but reducing funding and support for those in need… we are actually looking to increase support. What that looks like is yet undecided.”

Pugh was part of the select committee that oversaw the Accessibility for New Zealanders Bill. While she and the National Party ultimately opposed that legislation, she describes it as a helpful process to have been a part of for her role in shaping National Party policy on disabilities and carers.

“We had a huge number of submitters come along, and a lot of that information has helped inform me of not only the challenges but the solutions that people have got in the disability and carers space.

“I try to step back and look at the whole picture and how we as a National Party look at the whole social investment approach investing early and up-front for long-term benefit. But of course, that’s an expensive first hit, and until we know what commitments the current Government is lining up for the next few years, we don’t know what the financial situation is going to be, so it would be irresponsible of us to make a commitment now and then find we have to walk it back because there’s simply no money left.

“The commitment that I have made is that we will continue to have those conversations across the different ministries, because we can’t make a decision in a siloed way… we all need to be cognisant of each other’s portfolios.”

“I’m absolutely adamant that there will be no reduction in funding for the disability sector.”

Priyanca Radhakrishnan, Minister for Disability Issues, Labour Party

By Sarah Paterson-Hamlin

The Minister first came to Parliament in 2017, having been a member of the Labour Party since 2006. She was born in Chennai, India and went to school in Singapore before moving to Aotearoa New Zealand. She is also Minister for the Community and Voluntary Sector and for Diversity, Inclusion, and Ethnic Communities. She is Associate Minister for Social Development and Employment, and Workplace Relations and Safety. In her role as Minister for Disability Issues, Radhakrishnan has been trying to meet with as many disability organisations as she can since taking on the role in February.

So, for example, today I was out on [Auckland’s] North Shore to meet with I.Lead – a youth-focused group for young disabled people around leadership… after that I went to Creative Abilities which is also out on the North Shore which supports people particularly with high and complex needs, again, met with them to find out a little bit more about what they do but also some of the challenges for some disabled people there and also their families who are often the primary caregivers for them.”

Immediately before our interview, she had been at Hearing House which operates out of her Maungakiekie electorate.

“I got to witness the switching on of a cochlear implant for a one-year-old –which was really sweet!”

Though Radhakrishnan clearly enjoys these visits, they aren’t just for fun.

“A lot of what we’re wanting to do and working towards is a society that is inclusive and is accessible - knowing what the main barriers are and working across Government to remove them. That’s what I get to do as a Minister, and I love it – love being able to go out and hear from people directly.

“As long as I am the Minister this will be something I continue to do. One side of the Ministerial role is the engagement, and

“One of the things I’ve really learned is just how diverse the disability communities are.”

the other side is what we do with what we hear, and that’s what happens with the days that I’m in Parliament in sitting weeks.

I’m talking with the Ministry Whaikaha and officials there about the work they’re doing to transform the disability support services system. I’m also giving feedback in terms of what I’m hearing; pressing issues, conversations that then need to be had, either with my Ministerial counterparts or with the Ministry or with other agencies and the portfolios they have as well. So far, I’d say so good -

The Minister was proud of the Budget that the Labour Government released this winter, highlighting several aspects that foregrounded the needs of disabled people, including $863 million going towards the disability support services system, making Total Mobility half-price fares permanent, funding for specialist services for disabled people experiencing family and sexual violence, and contestable funding that allows organisations such as refuges to become more accessible “so if a disabled person decides a specialist service is the way to go or a mainstream service, they should be able to have choice around that service provision.”

One of the more complex challenges featured in this Budget, was the scrapping of the minimum wage exemption for disabled people. Radhakrishnan explained that this existed because of an outdated viewpoint that disabled people’s time was less valuable.

“We’ve wanted to address that in a way that makes things fairer and ensures that disabled people can get at least minimum wage for the work that they’re doing, but to do it in a way that doesn’t then compromise opportunities for employment… The exemption that we’ve worked through is basically a top-up for employers, but the outcome is that it is fairer for employees.”

It’s impossible to view this most recent Budget however, explains Radhakrishnan, without seeing it in the wider context of the impact of the new Ministry Whaikaha, the first of its kind in the world, and the shift in mindset this represents.

“We’ve moved from a health model of looking at disabled people as needing to ‘fix’ the disability, to a social model understanding that people are further disabled by the society they live in and the barriers that are presented to them. The Ministry was set up to ensure that disability support services continue to be delivered and to transform that system based on the Enabling Good Lives principles. Their other purpose is to influence systemic change in government and across government agencies, to remove those barriers that exist in society that are disabling and disempower disabled people.”

…people have been incredibly generous with their time and sharing what life is like for them, which is incredibly valuable.”

The Ministry has been co-designed with disabled people and focuses on aspirations as well as need. Radhakrishnan describes its establishment as “transformational - because we’re moving from a system that is less flexible, which is government telling disabled people what they need, to something that really puts disabled people central to their own lives.” She described the establishment through Ministry Whaikaha of Regional Leadership Networks, which ensure disabled people co-design the rollout of Enabling Good Lives nationally based on their knowledge of what some of the local issues in different parts of the country are.

“If you’ve got an ECE [Early Childhood Education] centre for example in that area of the regional network, that needs to be accessible for disabled people, this group will be able to work with them to help realise that.”

The past two Budgets have provided funding to roll the Enabling Good Lives (EGL) approach out beyond the three pilot sites where it is available currently. “The evaluation from that’s been great. I’ve met with people who’ve gone through EGL in some of the pilot sites, and it’s clear to me, hearing their stories, the difference that the flexibility and shift in mindset makes. And then also their confidence, for example some being able to work as a result of it which they couldn’t do previously – it’s pretty powerful.” Beyond the work that Whaikaha is doing in terms of support services, the Minister outlined the other key aspect of its creation which is something called “systems stewardship”. This is Whaikaha’s role of influencing change where decisions are being made across Government so that we move towards being a more inclusive nation.

“So much of what we’re hearing needs to change sits outside the Ministry’s issues portfolio specifically, when you look at transport, education, housing, access to healthcare, all of that sits with other government agencies. So, my expectation would be that Whaikaha works with other government agencies who affect change in those areas that are topical and most important for disabled people.”

Part of this will be Whaikaha’s role in leading the Government’s responses to the recommendations from the UN Convention on the Rights of People with Disabilities, working across all Government agencies to action change. As the first Ministry of its kind, Whaikaha also has a role to play in providing thought leadership on a global scale.

Beyond Whaikaha, the Minister also discussed the current Labour Government’s record on accessible housing.

“The need for more accessible housing gets raised with me a lot. It was only in 2019 under a Labour Government that Kāinga Ora adopted an accessibility policy that meant they now have a 15% target of all new builds to be built according to the Universal Design Standard. So we’ve been on a pretty ambitious plan to increase housing stock, but also now increase housing stock that is accessible which is something that we desperately need to do. We’ve just delivered 12,000 public homes which has meant we’ve been building more than any government since the 1950s. Kāinga Ora is on track now, mid this year, to meet that target of 15% accessible homes when it comes to their new builds.

“So that’s an example of work we’ve undertaken as a Government to make sure that we’re progressing the needs of our disabled people and disability community but there’s always so much more work to be done.”

“We don’t want [Ministry Whaikaha] to be a tick box exercise. We want it to be something that really holds the government to account and creates progress across various areas.”

Bonus questions for politicians

Are the current speech and language therapy provisions adequate for children with Down syndrome?

Toni Severin (ACT): “I'm not 100% sure, and I've got to be honest with that, but I know in general, there is a shortage to get kids in, and it doesn't matter if you have Down syndrome or are just having problems with speech. It's just having enough people out there, which is a huge thing that we're missing is a lot of qualified people.”

Jan Logie (Greens): “I think there should be the appropriate services for every kid in terms of being able to fully participate – so I think that means no!”

Maureen Pugh (National): “I have to be honest because I don’t know what the service looks like right now. I think the people with the best knowledge about these things are the people that work in it and use it. If we were going to make any decisions about that we would rely on the conversations happening between the users and the providers. I know that there is huge demand and probably not enough resource across all speech therapy, not just in the Down syndrome sector. We all know that more would be better, but we’ve got to be able to find better ways of providing services that don’t just keep requiring more and more money to be thrown at it when we can possibly find other ways. I will be guided by the advice of people involved in that. It’s a responsibility that we hold as policy makers to make sure that we’re not simply announcing funding for these things but we’re actually supporting the sectors to resource it.”

UpsideDowns has been fighting for better SLT provision for two decades

Priyanca Radhakrishnan (Labour): “I know that children with Down syndrome can benefit greatly from speech therapy in terms of addressing communication and swallowing delay and difficulties as well. I understand that it’s currently recognised as a skills shortage in New Zealand and that Government is working to encourage skilled SLTs from overseas to work here. The child development services provided through Whaikaha are going through an improvement programme at the moment, looking at what new funding models might be developed and what service pathways may be needed to be able to meet that demand. The shift toward Enabling Good Lives and the increased flexibility of services, will enhance the use of personal budgets for children to be able to access SLT. There is acknowledgement that things are tough in that space and demand has increased but there’s a range of things we’re doing to address it.”

How do you feel about the removal of the $5 co-payment for prescriptions?

Toni Severin (ACT): “It doesn’t add up. We do know that people are struggling to fill prescriptions. But we also know that there's a lot of people that then pick and choose what prescriptions they do fill in general. So, it will help some but it's about targeting the right people.”

Jan Logie (Greens): “While I’m really excited about removing prescription fees, I’m concerned there hasn’t been anything put in place to protect people’s access to Disability Allowance, Child Disability Allowance and Temporary Accommodation Service as a result of these add-ons with Work and Income, because it may mean that in effect for people and families that are impacted by our disabling society or have health needs, that it’s government giving with one hand and taking with another.”

Maureen Pugh (National): “We didn’t support it for a range of reasons. It’s not targeted, so it means that everybody has the benefit of prescription charges taken off. But the reality is that there are places now that don’t charge those $5 fees anyway. Community card holders

and people who are high use, so that use $100 or more, don’t pay after that. When you’re on a high, high lot of medication, it doesn’t take long for that $100 to ramp up. But there are people who don’t mind paying that because the medication in this country, most of it is still available free of charge. We just thought that people who possibly still can afford to pay for it should be paying for it. And those in need should be the people who have that subsidy applied [to them].”

Priyanca Radhakrishnan (Labour): “That is an initiative in Budget ’23 that I’m really excited about. It sounds like a small initiative, but it’s pretty powerful. We know that in the last year 135,000 adults didn’t pick up their prescription because of the payment. This is an initiative that helps people stay healthier, then also that further downstream helps prevent additional costs to our health system, and it levels the playing field for community pharmacies as well. For disabled people, we know that because it’s often per medication rather than per script [that the $5 co-pay is applied to] it’s a cumulative saving. I am aware that through the Disability Allowance, some would have been able to access funding to cover prescription costs but that’s not everybody within the disability community. So, I do think it’s one that will particularly benefit disabled people if they are needing to access more medications.”

Whether or not to charge $5 for prescriptions is an issue the political parties disagree on

What should be top of mind for the Down syndrome community when it comes to the 2023 Election?

Toni Severin (ACT): “My biggest thing is for people to vote on the principles and values around the parties that they align with, and their beliefs as well. And, you know, we all want the party vote, so I'd like them to give it to ACT. But the biggest thing of all, for any group, is not go for what we call the lolly scramble policies, where different political parties will throw out titbits to try to attract you. Because, in general, what's good for New Zealand is good for everybody.”

Jan Logie (Greens): “For me it’s about voting for a party that you believe is going to work to create the inclusive society where everyone in the whānau has the chance to thrive. Looking at what different policies there are and how they will work towards that end. I’m still a Green in terms of where we are at in the world with climate change and climate action. I don’t think we can separate those things. If we’re to be able to be settled and have hope, it’s about doing all of those things.”

Maureen Pugh (National): “My first reaction is to be really supportive of my own party of course, it is that time! But I think if anyone has any knowledge of the social investment approach that was developed by Bill English when he was Prime Minister…

that is the National Party’s philosophy that we live by. We need to invest in social support, and we need to do it up front in a really considered way. So, we see that when we talk about social investment for our young people who are finding themselves in trouble. We’ve announced military-style academies because a lot of these kids now are leaving school unable to read and write. We need intensive wrap-around care for them, so they come out being able to make meaningful contributions to society in terms of their own families, their workplace because they need to be in work, and also their community. So, when people are voting they need to look behind the shortterm lolly-scrambles that happen and look at the long-term, not only for individuals and communities, but New Zealand as a whole. More than any other time in history we can look at this at how we are pulling apart at the seams at the moment. There has never been a more important time to think about how we stitch ourselves back together as communities and as a nation. And hopefully when people are making their choices, they share that philosophy.”

Priyanca Radhakrishnan (Labour): “At the start of this conversation Sarah you mentioned Easy Read voting guides, to enable people to participate and exercise their democratic right to vote, and I think that’s exactly what everyone should be mindful of, or aware of, that they have a right to vote and that this is how our democracy is strengthened. The other things I would say is that we’ve taken a number of steps towards ensuring disability communities have greater choice and control over their decision making but there’s still so much more we need to do in that space and working towards a society that is inclusive. There is political will to do that and I would encourage everyone to bear that in mind as they vote.”

Improving Opportunities for Babies to Learn

Parents are the child’s first teachers. Parents provide a plethora of learning opportunities for their babies naturally, across many contexts and throughout the day. Parent and caregiver involvement that is specifically aimed at play is a critically important element. It turns out that for babies and young children who face the challenges of motor delays – as is often the case for babies with Down syndrome – the physical position a baby is in might matter a great deal.

Recent research from the Journal of Developmental Psychobiology has shown that babies appear to have the greatest opportunities for learning when they are in a sitting position, not a supine (lying down) one. In a sitting (or another upright) position, babies are able to use their hands easier, as they don’t have to work so hard against gravity. They are more easily able to be face to face with people and object. Parents and caregivers are found to interact more with their babies when they are sitting.

This does not mean that parents should be propping up their babies all the time. Researchers are clear that even 30 seconds of sitting – if it is filled with active interaction and play – can maximise opportunities for babies. And once an opportunity is maximised, it builds a foundation for more. Different “postural experiences” allow for more opportunities in general. Researchers make three recommendations, all of which are simple and all of which respect a baby’s motor development, no matter where it is at the time.

First, actively engage in play and interaction with your baby when they are lying down. It can be easy to be less involved with a baby who is lying happily on a mat. You do not need to interact with them all the time, nor intrude upon them when they are settled and occupied, but see if you make it a habit of creating opportunities for learning, play and interaction. Second, increase opportunities to experience the sitting position which might be congruent with typical motor development. This can be short and sweet, never pushing a baby to be uncomfortable, and always with a gentle and enjoyable tone. Remember, this can be just 30 seconds and they can be sitting supported by you or by another, as well as an appropriate piece of equipment. Lastly, engage in early intervention. Physiotherapy intervention, such as provided at places like the Champion Centre, integrates the development of motor skills so they are integrated effectively and at full potential. This will accelerate opportunity and growth across all realms, including learning.

Reference:

Finja learning in seated position

Anneliese and Mum

Paige learning in seated position

Kretch, K. S., Koziol, N. A., Marcinowski, E. C., Kane, A. E., Inamdar, K., Brown, E. D., & Dusing, S. C. (2022). Infant posture and caregiver provided cognitive opportunities in typically developing infants and infants with motor delay. Developmental Psychobiology, 64(1), e22233.

Kai Pai Charlotte. Seven year old Charlotte braved her fear of loud noises, and fully participated in her local Matariki festival, representing her school in the junior Kapa Haka group. A fantastic performance, front row on stage.

Poetry Section

This edition’s two poems are both ‘ABBA’ quatrains written together by Duncan Armstrong, Andrew Oswin, and Vincenzo Vaccarino.

Our Prime Minister

He is not Mr Whippy, nor is he a joker. He is not a broker, he is called Chippy!

Voting Don’t be a goat, you have a choice to use your voice remember to vote!

President’s Pen

By Kim Porthouse

I can’t believe how quickly the year is going by. The election is nearly upon us and yet it seemed an eternity away when it was announced! I hope you are all keeping an eye on policies likely to affect the disability world when thinking about your vote.

I know the restrictions and mandates put in place because of the Covid-19 pandemic have created some quite strong political views that will no doubt affect the election result! For me, I was grateful for the measures taken. Individuals with Down syndrome are immunocompromised just by having the condition. We saw overseas the devastating outcomes that occurred for people with Down syndrome when governments were too slow to put restrictions in place. In the beginning I was petrified for Brendon because he, like so many with DS has a heart condition and Covid-19 was affecting the heart and causing cardiomylitis (inflammation of the heart muscles). I was also concerned for myself as I have asthma. The restrictions put in place along with hand-washing and mask-wearing gave the time for vaccines and anti-viral medicines that were effective in limiting the disease, to be developed.

Due to these measures, Brendon and I managed not to contract Covid-19 for over three years. We recently tested positive to Covid-19 for the first time. We have had all four vaccinations and were able to start the anti-virals on the same day as we tested positive. I was really impressed by the follow-up from local health entities. We were supplied with a pulse-oximeter which measures oxygen levels in the blood (very reassuring to know they were being maintained). We were also rung each day for several days to check on our wellbeing and check if any specific assistance or follow-up was required. Fortunately, we only suffered mild symptoms and recovered well, which I firmly believe is because of the vaccinations we have had and the medication that is now available for vulnerable individuals to take. I, for one, applaud Jacinda Arden and the government for making the tough decisions that kept so many New Zealanders safe from the worst of the devastating effects we saw overseas. We, like so many New Zealanders, are once again able to live our lives to the fullest potential, participating in work and leisure activities such as StarJam and tenpin bowling for Brendon, and able to enjoy the company of friends and family. In the last edition I mentioned we had started a friendship group. This is going well & we are all enjoying getting out and about together – parents and kids alike!

Brendon and Elle

Brendon and Harry at a ten-pin tournament

My experience as volunteer Photographer for Special Olympics

By Carlos Biggemann a member of STEP-UP

It was called “New Zealand Special Olympics National Summer Games Hamilton 2021” the event was from the 8th until the 12th of December 2022. The participants came from Otago, Waikato, Northland, Canterbury, Papakura, Rotorua, Manukau, North Harbour and many more from all corners of New Zealand- Aotearoa, arrived the day before.

I took part as one of the media that covered the ‘Special Olympics HamiltonKirikiriroa Waikato Games”. There were more than 1,400 athletes and couches, 600 volunteers. It was a four days nonstop of excitement, intense work, glory and dedication. Ten sports in total across eight venues.

The sports that I covered as a photographer along with other collages of mine were Athletics, Basketball, Bocce, Bowling, Equestrian, Football, Golf, Inner Balls, Powerlifting and Swimming. Let’s not forget the opening ceremony. The majority of the games were on the Hamilton- Arena. “ Claudelands” Anyways my sweet mom and I on our very first day we went to pick up our t-shirts and other bits and pieces for Special Olympics. The day comes I was so enthusiastic to photograph just about everything, and of course I started with the “Torch parade”, there weren’t many people, but I took many pictures from that memorable lifetime episode.

After that I went to the Arena to download my pictures and to select the best ones to put on the Facebook page and other media as well. I stayed all morning and this repetition it was about the 4 days that I have stayed in Hamilton.

The other volunteers on the Claudelands floors they were in charge of the lunch, dinner, and break-up afternoons for the athletes and for us.

On that night it was the “BIG OPENING CEREMONY” I was ready at any moment there was a opportunity to take action and to capture for the athletes to bring it home those moments that for them were precious.

Every sport that I took photographs of it was like to be in the “ Special Olympics and acting as a paparazzi.” I have meet so lovely people lots of new friends I’ve made and lots of acquittance to know.

Sadly, the enclosure of the games and the disco had been cancelled as it was because of the number of cases of Covid were raising up.

At the end I did have a wonderful experienced as being the photographer of the Summer Games.

My mom and I were part of the volunteers for the games which were held on 2021 and sadly some cases of covid made us postpone it to 2022.

We were invited to be part of the games and we didn’t hesitate it, we flew over to Auckland so my sister could drive us to Hamilton the next day. To those who don’t know about Hamilton- Kirikiriroa its about 1hr drive full of green tones and it’s a hot humid city.

I photographed swimming and basketball, there I saw couple of familiar faces because I used to know them when I was participating in those sports. The swimming participants had stopped when positive cases of Covid had spread out.

And I used to play basketball, but I have quited as they were a bit taller tan me. In those 10 sports that I took photos of. My favourite would be swimming, the opening ceremony and the torch parade, but on the other hand my least favourite is Tenpin bowling. I know my cámara settings were right, it has lots of movements going on and the light wasn’t just right. On the 2sc floor there were a good variety of healthy foods, every day were different dishes. There were a big group of volunteers helping out in weighing height and waists. Also, what to eat as well such as less sugar and more healthy options The beautiful part was everyone participated according to their age group and their capacity, It was nice to see how the brotherhood of each city helped one and another.

Every 4th year this unique “Special Olympics” happens and this time it would be in Christchurch- Otautahi and of course I am ready and cannot wait to be again the photographer shooting away as a paparazzi. This is not my 1st time as a volunteer I helped in Newcastle Australia in the Asia-pacific games.

NEO Notes

Citation

“Ms Cindy Johns has worked, both voluntarily and professionally, alongside people with a learning disability and their families for more than 30 years.

Kia ora

National Volunteer Week, celebrated from the 18-24 June 2023 was an opportunity to honour the collective energies and mana of all our volunteers in the Down syndrome community. This year the theme was ‘Time to Shine – He wā pīataata’.

I am sure you will join me in thanking all our wonderful volunteers for the difference they’ve made and the impact they’ve had on those we help.

I would like to shine a light on Cindy Johns, a recognised volunteer in our community who became an Officer of the New Zealand Order of Merit (ONZM) in the New Year Honours List 2023 for her services to people with learning disabilities. In addition to her various volunteer roles, Cindy is known for encouraging parents to become volunteers and then building the capacity and capability of these volunteers. I am sure you will join me in congratulating Cindy on this welldeserved award.

Ms Johns established the Taranaki branch of the New Zealand Down Syndrome Association in the 1980s and served on the Association’s national board, two IHC committees, and Kapiti Special Olympics for many years. She is the current chair of Family Networks New Zealand. She was a national advocate for IHC in the 2000s, during which she assisted with establishing People First New Zealand, a disabled persons organisation for people with learning disabilities, where members learn about disability rights and speaking up in their life, community and to government. She has been the National Manager of People First New Zealand since 2009. She has promoted Easy Read, a way of writing in everyday words and images that assist understanding, to be a recognised alternate format. She is a member of the Disabled Persons Organisation Coalition, which works to implement disability rights to improve the lives of disabled people in New Zealand. For the last six years, Ms Johns has assisted Sir Robert Martin to undertake his role as an independent expert on the United Nations committee for the Rights of Persons with Disabilities”.

Cindy Johns and Zandra Vaccarino at the celebration of Cindy’s ONZM

Tribute to another wonderful volunteer, Carmen Slater

It was with sadness that we learnt that Carmen Slater returned to her mother’s arms, peacefully at home with her family by her side on Monday 1 May 2023. Carmen Slater was a well-known and much-loved member of the Wellington and New Zealand Down Syndrome Association. Carmen had served on both the Wellington and National Committee for a number of years. She was a passionate advocate for people with Down syndrome and her warmth, compassion and wisdom provided support to so many people with Down syndrome and their whānau. Carmen was the regional coordinator of Wellington for a number of years and during this time organised a number of educational events, was actively involved in organising the Frances Clarke Awards and involved in the establishment of VIVA, a social group for people with Down syndrome. In addition to her governance role for the NZDSA, she volunteered for additional projects and was involved in organising educational events, contributed to the establishment of STRIVE and lead the way to adopting social media as a means to engage with our community. Carmen’s legacy will continue to support families and people with Down syndrome. The NZDSA would like to acknowledge her service and contributions to the Down syndrome community. We also want to extend our thoughts to her family: her husband Gerry and her sons, Gabriel, Beau and Conor, her parents, siblings, whānau and her many friends.

The NZDSA certainly would love to shine a light on all our other wonderful volunteers so I encourage you to nominate a volunteer for a Rose Award so we can honour and thank our volunteers. To find out more about the Rose Award see the Notice page.

General Elections – 14th October

Why vote? My response would be … for the Down syndrome community! Your voice and vote can make a difference. Your vote counts and has the power to determine which political party will govern Aotearoa New Zealand. So before you vote, take the time to consider which political party you believe will implement policies that will facilitate people with Down syndrome to enjoy full citizenship rights. This year Sarah has spoken with members of the various political parties and highlighted each parties’ response to key issues for the disability sector. We hope that this will provide an overview of a few key areas of interest and will assist you in deciding who should get your valuable vote.

I would like to invite you to another election event. This year the NZDSA is delighted to be partnering with IHC and a number of other organisations to host IHC’s 2023 Election Forum which will feature politicians from a range of parties.

Carmen Slater

The event will be held on the 20th September at 4pm. You can attend in person or it will be streamed online. We will be sharing more details via social media and Enews. We are inviting you to send questions for politicians on the panel ahead of and during the event by emailing advocacy@ ihc.org.nz. This Election Forum is designed specifically for disabled voters and whānau.

NZDSA’s Annual Appeal – September to October 2023

The NZDSA is very grateful that Southern Stars, a Charitable Trust, is once again running the 2023 annual fundraising telephone campaign on behalf of the NZDSA.

The funding that the NZDSA has received from generous donors over a number of years, has enabled the NZDSA to host camps and workshops for people with Down syndrome, to publish CHAT 21, as well as enabling the NZDSA to produce resources like our New Parent Pack, Plan for the Future, Turn the Page, Transition from School, Creating a Positive Hospital Experience, Play and Daily Routine, Dear Community, Dear Health Professionals, #We Decide digital story, the Employment Resources and the more recent participation in the #Ridiculous Excuses Not To Be Inclusive campaign.

If you receive a call from a Southern Stars team member, take a moment to thank them for supporting our community and if you do make a donation, thank you!

Kōrero and Kai series

I have truly valued the opportunity to meet with members of our community at the Kōrero and Kai events that the NZDSA has hosted in Northlands, Auckland and Nelson. The focus of these sessions was to connect with our community and to explore Enabling Good Lives. It is so inspiring to learn from others and to see our community connecting or reconnecting post lockdowns and isolations and having conversations about a Good Life.

In July, the NZDSA hosted a meet and greet in Hokitika. We will also be returning to Northlands and Nelson to share more about Enabling Good Lives and to Explore EGL in Education with Dr Maree Kirk. In August we will be in Hokitika on the West Coast and back to Auckland and then we are planning to visit the East Coast and Southland.

Please see the NZDSA Enews and Facebook page for more details. We hope to see you at these events.

The NZDSA meeting with the Northlands families at one of the events

Congratulations

The NZDSA congratulates Prudence Walker on her appointment as the new Kaihautū Tika Hauātanga Disability Rights Commissioner.

Whaikaha – Ministry of Disabled People has marked their first anniversary and announced being gifted a sign name on behalf of the Deaf community, making it the first Ministry to have a name in all of Aotearoa New Zealand’s official languages.

CHAT 21

CHAT 21 has evolved from a newsletter, typed and photocopied on blue or pink paper, to printed in black and white, then moving to a coloured cover, and to full colour in a digital format so it is very exciting to know we will reach another milestone with this edition of CHAT 21printed in full-colour! The team at the NZDSA will be celebrating when we receive the first shipment of CHAT 21 in colour.

Congratulations to Sarah, Dan and everyone involved and a special thanks to all our donors, Southern Stars and Lion Foundation for making this possible. We hope that you have enjoyed reading this edition in colour and we would love to know what you think of this edition, so please share your feedback with Sarah editor@nzdsa.org.nz or Zandra neo@nzdsa.org.nz

I also want to remind you to read the Notice page for important information.

Matariki

In closing, I am writing this on the eve of Matariki. So I hope that you had time to gather with your whānau and friends to celebrate what has been and what is to come. July also marks the beginning of a new financial year for the NZDSA so we will be reflecting on what we have done over the past year, remembering those who have passed on, celebrating achievements, and looking to what we will be doing for the next twelve months. Please join us at our AGM so we can share our reflections of the 2022 to 2023 financial year.

Ngā mihi o Matariki, te tau hou Māori Zandra

Top left: Freedom, Erin and Thomas providing a helping hand at the NZDSA under 12 event

Top right: Prudence Walker the Disability Rigths Commissioner and Zandra

Bottom: Zandra meeting with families in Nelson

Special Olympics World Summer Games demonstrate what sport is really about

The Special Olympics World Summer Games wrapped up in Berlin this week and Coen Lammers looks back at 10 incredible days as part of the New Zealand team, watching courage and camaraderie in buckets.

The Special Olympics World Summer Games are the largest inclusive sports event on the planet, as 7000 athletes with an intellectual disability from 190 countries competed across 26 sports. Despite the size of the event and the global involvement, the World Summer Games do not have the profile of the ‘real’ Olympics or even Paralympics. Thankfully the past week, the New Zealand public caught a glimpse of what 39 fantastic Kiwi athletes achieved in Berlin, earning a record haul of 34 medals, which helped to put the team on the radar, for at least a few days.

The public and the media can relate to medals, but Special Olympics is about much more than medals.

Every athlete in Berlin wanted to win a medal, but those who finished eighth also put their hands in the air to celebrate and walked away with big smiles on their faces. The modern Olympic Games were founded in 1896 under the motto that participating is more important than winning, but somewhere along the way that seems to be lost in our obsession with medals.

Every so often, athletes with no chance of a medal capture our imagination, like the Jamaican bobsleigh team or ski-jumper Eddie the Eagle, and they even make movies about them.

At the Special Olympics, these unlikely heroes are everywhere you turn.

Founder of the modern games, Pierre de Coubertin would be smiling if he saw the athletes at the World Summer Games demonstrating the Olympic spirit.

At the opening ceremony, Special Olympics athlete representatives pledge to “Let me win, but if I can’t win, let me be brave in the attempt”. Most of them did not win, but they all felt like winners and were celebrated accordingly.

Most mainstream athletes would not be able to contemplate the challenges many Special Olympics athletes have to overcome, physically and mentally, just to be able to play sport and then make it all the way to the World Summer Games. Anyone fortunate enough to watch the 26 sports in Berlin, was left inspired with a smile on their face and tears in their eyes. Nobody who watched the 800m freestyle races in the pool will ever forget Henry Liversage, an athlete with an intellectual as well as a physical disability, making it difficult to gather any speed.

The South African moved his arms as fast as he could, slow but steady.

After 13 minutes when the rest of the field had finished, Henry still had 15 laps to go.

The German lifeguards were getting increasingly concerned, following the swimmer step by step, but Henry wasn’t worried. The sold-out crowd had blisters from clapping and their excitement nearly took the roof off when the South African finally touched the wall, more than 10min after the rest of the field.

Few will remember who won the race, but few will forget the courage of Henry. And he was not alone. Each competition included athletes who had triumphed just by getting to the starting line.

The powerlifting arena is always filled with plenty of drama, but watching the smallest athletes squeeze every ounce of energy out of their tiny frames, just to be able to lift an empty bar, and seeing their excitement and pride, was awe inspiring to witness.

The local population in Berlin soon caught onto the incredible spectacle on show all over their city, and by the closing weekend, long queues were snaking out the door of every packed venue.

As well as these personal successes, the joy and camaraderie spills from each arena.

Making friends is one of the key reasons most athletes want to come to the World Summer Games, whether they are in your team or the opponents.

When a player gets hurt, or otherwise upset, the match or race will often be interrupted by athletes stopping what they were doing to check on their opponent, in some cases to the frustration of their coaches.

Some of the coaches take winning more seriously than others, but they all agree that trying your best is all that counts. In Special Olympics personal bests are

regarded more significantly than a medal, and of course, make sure you have fun doing it.

Every sportsperson starts their career for the fun of the game, but as things get more serious and parents, coaches or team-mates start measuring success by victories, instead of joy or improvement, many lose sight of the original goal. So if anyone wants to be reminded what sport is really about, find out where the next Special Olympics event is in your region and join the party.

Coen Lammers is a veteran of three Olympic Games and six FIFA World Cups and attended his first Special Olympics World Summer Games in Berlin. He is also the former editor of Chat 21!

Bella Lammers, Jesse Williams, Matthew Smith, and Haven Drinnan with their bronze medal for the 4x25m relay

Opening ceremony of 2023 Special Olympics World Summer Games in Berlin

Music & Fun Playgroup turns ten!

By Sarah Paterson-Hamlin

In a church hall in Newmarket Auckland, fortnightly choruses of ‘Where is Poppy?’, ‘Our Lovely Lycra’, and ‘Open Shut Them’, have now been ringing out for an entire decade.

The incomparable Margaret Davidson, a retired paediatric neurodevelopmental therapist and her team of volunteers run the group every second Wednesday for under 5s with additional needs from all over Auckland. Among the regular attendees, those with Down syndrome have been by far the most significant group numerically, joined by other children with conditions such as autism and Global Developmental Delay. Siblings of various ages have always been a welcome addition as well, from very new babies to high schoolers on holiday. The group sings various educational and fun songs together, opening and closing with Hello and Goodbye songs that incorporate Makaton. Some weeks involve a theme such as the colour red or teddy bears’ picnics. There’s a chance for free play with provided resources, during which Margaret and her volunteers circulate and offer guidance or a friendly ear. There’s also a time to enjoy morning tea together, with the children partaking

of their own snacks from home (or bottles or Mum!) and adults enjoying a cup of tea or coffee and a biscuit provided by the volunteers.

Over the years, it has become an invaluable safe space for parents on this journey together and fostered countless lifelong friendships. It has also been an informal way for groups such as UpsideDowns and the Auckland Down Syndrome Association to connect with their members and share opportunities for support.

During the COVID-19 period, the group was naturally conscious of the immunecompromised nature of their attendees, and online sessions continued to provide a connection and a bright spot in the day – including themed dress-ups!

For so many whānau, it’s impossible to imagine any of the last ten years without these joyful Wednesday sessions. Margaret and her team have created an extraordinary legacy for the Auckland Down syndrome community, and it was a privilege to be able to celebrate this together this July for the 10th birthday celebrations. Here’s to the next decade!

Photos by Mara Sommer (marasommer.com)

IHC Library

First signs: everyday words

By Jenna Brockett

First Signs contains 13 New Zealand Sign Language signs with details and illustrations on how to do them.

It includes the two official languages of New Zealand - Māori and New Zealand

Sign Language

‘First Signs’ gets you started with key signs to help you communicate with your little one, easing frustration (for everyone!) by giving them a means to express their wants and needs.

The autism friendly cookbook By

Lydia Wilkins

Summary: “The Autism-Friendly Cookbook was created by journalist Lydia Wilkins for autistic adults and teens to turn to when cooking for friends, lacking inspiration, or on those low-energy days. With recipes to suit any occasion, the book is written in clear, jargon-free language which makes ‘the obvious’ obvious. Recipes are categorised by meal with additional guidance on the level of energy needed to tackle them, with options for low-energy or meltdown days, or days when you’re able to take on a new challenge. They contain adaptations and options to suit different dietary needs including vegetarian, vegan, gluten-free and dairy-free, and additional modifications for those who are sensory seekers, sensory avoiders or who want to expand their repertoire in the kitchen.”—

Amazon

Traveling different: vacation strategies for parents of the anxious, the inflexible, and the neurodiverse

By Dawn M Barclay

Traveling with children is always challenging, but for parents of children with autism spectrum disorder and/or mood and attention and distraction disorders it can be especially intimidating. How should parents of children experiencing meltdowns deal with clueless and judgmental onlookers? What are the best methods to alleviate motion sickness when your child might already be on a cocktail of drugs? Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse answers these and many other questions parents may have when traveling with their children.

Facing mighty fears about trying new things

By Dawn Heubner

First time jitters are normal, but when they turn into tears and outright refusal, the world shrinks in problematic ways. Facing Mighty Fears About Trying New Things teaches children to manage uncertainty about new experiences. Fun Facts engage children while a Note to Parents and Caregivers and a supplemental Resource section make this the perfect guide for parents and mental health professionals.

This book is part of the Dr. Dawns Mini Books About Mighty Fears series, designed to help children ages 6-10 tackle their fears and live happier lives.

Just ask!: be different, be brave, be you

Sonia Sotomayor

By

Feeling different, especially as a kid, can be tough. But in the same way that different types of plants and flowers make a garden more beautiful and enjoyable, different types of people make our world more vibrant and wonderful.

In Just Ask, United States Supreme Court Justice Sonia Sotomayor celebrates the different abilities kids (and people of all ages) have. Using her own experience as a child who was diagnosed with diabetes, Justice Sotomayor writes about children with all sorts of challenges - and looks at the special powers those kids have as well. As the kids work together to build a community garden, asking questions of each other along the way, this book encourages readers to do the same. When we come across someone who is different from us but we’re not sure why, all we have to do is Just Ask.

Whole child reading: a quick-start guide to teaching students with Down syndrome and other developmental delays

be adapted for learners of any age who are reading at a third grade level or below. If you have at least five minutes a day to work on reading, you have enough time to get started using Whole Child Reading!

Featured Journal article

The disability gap in voter turnout and its association to the accessibility of election information in EU countries by Teglbjærg, Jonas Henau, Chapman, Madeleine, Dammeyer, Jesper, Mamali, Freideriki Carmen Series: Disability & Society; 37 (8) 1342-1361: 2022 Read this Article

Summary: It is known that people with disabilities encounter barriers to participation in national elections. These barriers often lead to differences in voter turnout between people with disabilities and those without (referred to as the disability gap). This study analysed the disability gap in national elections between 2006 and 2016 in 24 European Union countries… The study found that individuals with disabilities are more likely to vote in countries where election information is provided in accessible formats than in countries where it is provided in standard, non-accessible formats. Accessible formats include those that use easy-toread layouts, large print, tactile writing systems, and read-aloud systems.

2nd edition

By Natalie Hale

Summary: Discover the keys to teaching children and adults with Down syndrome and other developmental disabilities how to read for meaning. Written for today’s busy parents and teachers, this easy-to-use guide explains how to go in through the heart to hook beginning and struggling readers, but then how to teach to the brain; so that learning is fast and permanent. The methods in the book can

If you are interested in any of these items or would like to know what else IHC has, please contact your library team (Phil, Ros and Michael) on 0800 442 442, email them at librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha. co.nz/

You can watch their library video at https://www.youtube.com/ watch?v=AunmBYTIZTM

Kim Porthouse President 0800 693 724 president@nzdsa.org.nz

Gwen Matchitt Vice President

Zone 2 Representative Waikato, BOP & Taranaki 0800 693 724 zone2@nzdsa.org.nz

Angelique van der Velden

Zone 5 Representative Ashburton & all areas above 0800 693 724 zone5@nzdsa.org.nz

Bev Smith

Zone 1 Representative Northland 0800 693 724 northland@nzdsa.org.nz

Zone 3 Representative Whanganui, Manawatū, Gisborne & Hawkes Bay 0800 693 724 zone3@nzdsa.org.nz

Glen Jelley Zone 6 Representative All areas below Ashburton 0800 693 724 zone6@nzdsa.org.nz

Maia Faulkner

Zone 1 Representative

Auckland 0800 693 724 auckland@nzdsa.org.nz

Carey-Ann Morrison

Zone 4 Representative Wellington & Wairarapa 0800 693 724 zone4@nzdsa.org.nz

Averill Glew Self-Advocacy Portfolio averill@nzdsa.org.nz

Zandra Vaccarino National Executive Officer 0800 693 724 neo@nzdsa.org.nz

Linda te Kaat National Administrator 0800 693 724 na@nzdsa.org.nz

Shelley Waters Treasurer treasurer@nzdsa.org.nz

Daniel te Kaat Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz

Jess Waters Social Media & Information Officer hello@nzdsa.org.nz

Sarah Paterson-Hamlin CHAT21 Editor editor@nzdsa.org.nz

Paula Beguely Auckland Community Liaison Officer 0800 693 724 clo@adsa.org.nz

Pauline Marshall Canterbury Community Liaison Officer 0800 693 724 cdsainc@gmail.com

Siobhan Vaccarino Administration Support Officer hello@nzdsa.org.nz

Kathryn Sadgrove Northland Coordinator 0800 693 724 ksadgrove@xtra.co.nz

NZDSA Socials

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. facebook.com/NZDSA

Follow us on Instagram to see what our communities are up to at nz_down_syndrome

Check out the NZDSA’s website at nzdsa.org.nz

Sandra Slattery Taranaki Community Liaison Officer 0800 693 724 taranakidownsyndrome@gmail.com

NZDSA Membership

Membership is now done online. For all details please go to www.nzdsa.org.nz or for any queries please ring 0800 693 724. If you have not received an email to update your membership online please call the number above.

Donations

The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you can make a donation big or small, please go to www.nzdsa.org.nz or ring 0800 693 724.

NZDSA Committee

NZDSA Staff Regional Liaison Officers

Announcing the NZDSA Annual General Meeting

Date: 16th October 2023

Time: 07:30 PM

Join Zoom Meeting

https://us02web.zoom.us/j/83551947595?pwd=ZjBMU

jBaVXZlK2RPRkc4UTg2aUFldz09

Meeting ID: 835 5194 7595

Passcode: 882298

Share your employment stories

The NZDSA is asking people with Down syndrome and their employers to share their employment story. We have a range of ways of contributing to this resource.

• If you live in Auckland we are calling for people to participate in a video production.

• If you want to share your story but would prefer not to be on camera then just send us a written story.

• Film a short video of you at work answering the following questions:

For people with Down syndrome:

• Tell us about your job.

• Tell us about the things that you do at work.

• What are the favourite parts of your job?

• What does having a job mean to you?

For employers:

• Can you tell us a bit about your company?

• What does inclusion mean to you in your workplace?

• Can you tell us about some of the positive aspects of having someone with Down syndrome as part of your team?

Please also make sure your video is no longer than two minutes and is filmed in a landscape format. We would like to share these stories with our network to raise awareness. This may include online via our website and social media, so please make sure that anyone included in the videos is comfortable with this. Please contact Zandra neo@nzdsa.org.nz before the 30th June to indicate your expression of interest in participating in a video or sending in your written or video contribution.

Numicon Kits

We still have Numicon kits available if you are interested in loaning one for the school year. Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon the website is http://www.numicon.co.nz/

• The NZDSA has 16 kits to loan to NZDSA members.

• These kits can be used at home or school.

• The loan period is from February/March to the end of November.

• The NZDSA does require you to pay a refundable bond of $60.00.

• The NZDSA will reimburse you the $60.00 bond if the kits are returned clean and complete.

• The only cost to you is the courier and handling fee which is $35.00 and the cost of returning the kit to the NZDSA.

If you would like to borrow a kit please contact Linda te Kaat at na@nzdsa.org.nz or 0800 693 724

Tell us your story!

We are looking for adults with Down syndrome to tell their life stories! We will either publish these stories in a book or include them in CHAT21 or on the NZDSA’s website. We will be looking at different aspects of life stories, for example education, work, friends, love, leisure time, spirituality, inclusion, and dreams for the future. If you are interested in being part of this project, please contact Zandra at neo@nzdsa.org.nz and we will send you a list of questions that you could have a look at. We will organise a Zoom meeting where you can tell us your life story. You are welcome to bring a support buddy or whānau member to this Zoom session. Hope to hear from you soon!

Thanks

Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year:

• Lottery Grants Board

• COGS: Christchurch

• COGS: Rodney/North Shore

• COGS: Hamilton

• COGS: Auckland City

• COGS: Coastal Otago

• COGS: Manukau

• COGS: Waitakere City

• COGS Southland

• COGS Manawatū/Horowhenua

• Holdsworth Charitable Trust

• Eastern & Central Community Trust

• Te Whatu Ora — Health NZ

• Ministry of Social Development

• Joyce Fisher Charitable Trust

• Pub Charity

• Rata Foundation

• T G Macarthy Trust

• Lion Foundation

• Grassroots Trust

• Southern Stars

• Lindsay Foundation

Our People

The CDSA go to Caddyshack

Top left: Julia Flanagan & Aiden Walsh

Top Right: Harry Mitchell with Vanessa Mitchell (on course) & Vicki Lynch

Centre left: Lydia Wilkinson

Centre Right: Julia Flanagan

Bottom left: Cheeky lads — Harry Mitchell & James Lynch

Bottom Right: Aiden Walsh