Siblings together

We’ll probably never know for sure, but Shona suspects that her little brother, Roderick, might be the oldest person with Down syndrome in Aotearoa. Shona was two when Roderick was born, and the two have now been blessed with 75 years (and counting) of a loving sibling relationship which has helped shape the lives of many other families as well as their own, through the pioneering work of Hōhepa, which came about because of Roderick’s birth.

Shona and Roderick Stronach were born in the 1940s, and spent their early years with their parents and older twin sisters, Marian and Marjorie, on the wild and rugged Highcliff area of the Otago Peninsula, where the family had a clifftop farm. Shona only has vague memories of Roderick crawling along the passageways of that home, as both were still quite small when the family relocated to the gentler vicinity of Tomohawk Lagoon. 

“We bordered that lagoon and we had a wonderful life,” Shona recalls. “And of course there are a lot of stories about Roderick’s adventures there! He was a great one to run away. Once, we couldn’t find him and our mother found him right down the bottom of the next-door paddock – he was under the legs of a bull!”

It was a large family home, and Shona and Roderick spent much of their time playing together there. 

“We had this big veranda and we had this four-wheel jigger thing that I used to push him in. We created ghost trains and things like that,” Shona laughed as she recalled these early years together. “I was obviously a fairly helpful caregiver in terms of entertainment! Those were lovely memories.”

Shona can’t recall any negative attitudes towards Roderick – only the care of the neighbours. She also can’t remember her parents discussing the fact that Roderick had Down syndrome with her, or that she had much consciousness of it at all until the age of about 12.

“I do remember at early adolescence being self-conscious and realising he was different, and having to really grow to accommodate that over, maybe two or three years coming to terms with it.”

From his youngest years, Roderick possessed a friendly, warm, and radiant nature. “At family picnics you’d look around and say ‘Where’s Roderick?’ and he’d be off with the next group saying “I know you!” That’s lasted his lifetime those words – ‘I know you!’ – and that lovely friendliness and warmth.”

At that time, integrated or mainstream schooling weren’t options for Roderick, and so from the ages of seven to about ten, he attended Sarah Cohen School in Dunedin, a school established for pupils with special needs in 1926 that is still going strong today. Roderick was not academic, and though he learned some letters there he never became fully literate. 

In the background of the family’s lives, since the time of Roderick’s birth, their aunt, Marjorie Allan, had been pursuing ambitious goals that were inspired by her new nephew. At the time, Marjorie was overseas in London studying the work of Rudolph Steiner. When Roderick came along, she decided to move into training for therapeutic education and social therapy for people with intellectual disabilities based on Rudolph Steiner.  

Waipatiki picnic

“When Roderick was born she came back to meet him, then she returned to Europe and trained in the various Rudolph Steiner curative and therapeutic homes and schools where that work was developed and gathered up as much experience as she could. And then in 1956 she came back and toured New Zealand and lectured about the work, needing funds of course. When she was in Hawke’s Bay, a farmer called Lew Harris who had an intellectually disabled daughter, came forward and really wanted to help with the work, and was a really generous benefactor and donor.”

Thanks to Lew Harris (later Sir Harris), in 1957 the very first Hōhepa building was erected in Poraiti in the Hawke’s Bay, and became a residential school, initially for only nine children. One year later, a ten-year-old Roderick joined Hōhepa. After a short time in the school, he moved on to the newly acquired farm property in Clive, where he was to spend the next six decades of his life. 

Two years after Roderick made the move to Hawke’s Bay, Shona and her mother followed, their father having passed away. 

“My mother, Mary Stronach, took on the management and care of the house with the children and that freed up my aunt to concentrate on the valuable teaching and therapeutic work. My mother had a very important role holding the whole management together in terms of practicalities. She was good value! I went to Napier Girls High School but I lived there [at Hōhepa]. So it was an interesting time!” 

By this stage there were about 24 children, living in dormitories of six to eight, each cared for by women known as ‘dormitory mothers’. Though he was now living at the farm in Clive, Shona and her mother were thrilled to be reunited with both Roderick and Marjorie.

“You have your own life too by that age, so it was an interesting transition, but I was always very grateful for what I learned and received through Hōhepa. As a teenager you don’t always recognise it at the time! But I mean really it was wonderful. I got a chance to be one of the dormitory mothers on the weekend and I began to take responsibility which is good for teenagers.”

Once at the farm, Roderick initially lived at the main house and underwent some transitional schooling, alongside craft work, music, and therapies. At the beginning of his teens, he went to live at Anyon House, one of several small houses for around half a dozen residents at a time. At about this time, his mother and aunt purchased a beach house at Waipatiki that was to become a second home for the family.

“We’d all be there for weekends or holidays and my sisters would come down too. So this beach at Waipatiki was very special and a lot of the people who worked at Hōhepa shared that as well.”

Over the next sixty years, Roderick moved through various stages of life at the farm, always directed by his preferences and aspirations.

“He moved himself through his life stages at the farm, he was a farmer and a gardener, and used to get the milk and work the cows. Then he moved into the workshops and did woodwork and then there was the copper workshop. Each time he would let people know he wanted to move on.”

Highcliff farm

As he got older, Roderick struggled with the noise of the copper workshops, having never liked loud sounds. He chose to move on to the candle workshop, before eventually selecting what he termed ‘Quiet Care’ – the retirement home section of the Hōhepa community where he still lives. Though he has many interests, two in particular stand out to Shona that he’s been able to enjoy more, once moving into retirement.

“He carries an enormous interest of the officialdom of all the meetings that he’d been to with my aunt and the Trust Board and conferences. That was in him, and he’d take his bundles of papers and do his office work. In 2018, he was given honorary life membership to the Hōhepa Homes Trust Board.”

The other great love of Roderick’s life has been classical music – unsurprising when considering both his mother and aunt began their careers as music teachers before the Hōhepa journey began.

“He always wanted to be a conductor, if there were any musicians around or bands at the fair or anything, he would be up there conducting and he was good too. Music was one of his real loves and he still has that.”

Now an “elderly and distinguished gentleman”, for the past year or so, Roderick has been unable to weight bear, and prefers to spend most of his time in his room. “But he’s still very present. I was there last week and we had such a good time – the cat had got up on the arm of his chair and was determined to interject in our conversations. It was lovely, Roderick was right on the ball. But then the next day he was just so tired.”

Although less physically capable, Roderick’s mind is unaffected by dementia, and he retains the ability to “just radiate” that Shona recalls characterising him from his infancy.

“He never had any shyness. He would just go up to people. His “I know you”, that was to strangers, but people he knew he would say ‘Are you happy?’ He’s 75 and that’s the main thing that he says now – ‘Are you happy?’. It was like, when you reach out to somebody you’re telling them that you recognise them. So that’s followed him all his life. He has a lot of humour and I think I played up a lot with that too in terms of the fun and the games and the songs, you know. Even now he’s not so capable but he can come up with some incredible humour. He’s got a twinkle in his eye behind what he’s saying.”

Recent chat

Shona lives in Christchurch now, but the siblings have never stopped seeing each other multiple times a year, and their bond is indelibly strong. “When we’re together there’s no barriers between us, we’ve got a good rapport.” 

Just as Roderick’s arrival started her mother and aunt on an extraordinary journey that would ultimately found the beloved Hōhepa organisation, so too was Roderick always a part of Shona’s life pathways.

“As a 5-year-old I announced I wanted to be a children’s nurse when I grew up. And that resolve followed and shaped my career decisions throughout my life. I trained as a nurse and stayed close to the work with children. I lived up in Hawke’s Bay for ten years and for a good six of those I was working as a community nurse at Hōhepa.  I think the care model which surrounded Roderick very much influenced the course of my life.”

Today, Hōhepa has branches in Canterbury, Auckland, and Wellington, as well as the original community in the Hawke’s Bay incorporating both the original school community at Poraiti, and the 50-acre Clive farming and workshop community where Roderick lives. 

“Some might say that Hōhepa is an institution but it’s not. It’s a community of people and wonderful people that come and go from all over the world… The essence of Hōhepa is community and it still is, it’s not institutionalising. I know Hōhepa’s had to work very creatively to retain community but also to be out in the wider community. It has widened its web but it hasn’t lost its community sense.”

It’s a community – and now series of communities – that have made an immense difference to so many lives: residents, students, staff, volunteers, and Trustees, and without Roderick Stronach, who knows if it would have ever come to pass? Shona speaks with an incredible warmth, respect, and love for her mother and aunt, and for the many others who have worked to continue their legacy at Hōhepa. But most of all, her affection shines through when she speaks about her brother.

“I hope I’ve given you a reasonable picture of somebody who is very special.”

 

Colin Bailey continues to be a role model and trailblazer for people with Down syndrome, 40 years after he became New Zealand’s first ever Special Olympics athlete.

A Hutt Valley athlete, Colin, who has attended every Special Olympics National Summer Games since its inception in 1985, has many stories to tell.

In December, Colin will again be attending the Freemasons New Zealand Special Olympics National Summer Games, his tenth games, where he will be competing alongside 1,200 athletes in ten sports across eight venues in Hamilton.

“Colin is an amazing person in his own right, but he holds a very special place in our community,” says Carolyn Young, Chief Executive Officer of Special Olympics New Zealand.

“Colin and the other pioneers showed the way for thousands of athletes who have followed his great example, so we are extremely grateful to him and those supporting him.”

Colin’s Special Olympics journey started in 1982, when he was spotted by visiting American doctor Dottie Fitzgerald. They encouraged the talented young swimmer and his coach Grant Quinn to attend the Special Olympics World Summer Games in Baton Rouge the following year, as well as starting a New Zealand branch.

That fateful meeting changed both of their lives forever, and one year later Quinn, Colin and his three team-mates found themselves on their maiden plane trip to the United States.

Colin, who recently turned 60, says he best remembers the stunned crowd in Louisiana, as the small, but boisterous Kiwi contingent burst into a haka at the closing ceremony.

More importantly, the young swimmer made an even bigger impression in the pool, getting a special tribute from Special Olympics founder Eunice Kennedy Shriver, sister of John F Kennedy, as well as praise from four-time Olympic champion John Naber who could see no flaw in Colin’s impeccable technique.

Colin and his team may have returned with a bagful of medals, however his fondest memories are not from the pool, but from making new friends from all around the world.

 

 

“And that’s what it’s all about for Colin. Having fun and meeting people,”

says Mum, Lee, who has been poolside for longer than she can remember.

Colin continued to attend every National Summer Games since 1985 and has suggested his Mum needs a bigger house for all his trophies and ribbons!

After decades in the pool, Colin swapped his swimming goggles for a ten-pin bowling ball. “I wonder if that was to get away from his Mum, because I was the swimming coordinator,” laughs Lee.

Whether in the pool or the bowling alley, Special Olympics is all about camaraderie, especially for Colin.

While many people with disabilities mingle with peers at school, residential care, or at day activities, Colin worked most of his adult life at Hirepool.

“So Special Olympics was the only way for him to meet his peers and make new friends,” says Lee, who adds that COVID-19 restrictions had been hard on her son, with Special Olympics training on hold for the past six weeks.

Once training resumes, Colin and his Hutt Valley team will start preparing for the National Summer Games in Hamilton, starting on December 8.

“He is not as good in bowling as he was at swimming, but he doesn’t care,” says his mother.  “As long as he has fun and can meet new people.”

 

As the Down syndrome community prepares for the exciting premiere of Down for Love, a show all about people living with Down syndrome who are on a quest for romance, I sat down with the Series Producer – and my sister –  Robyn Paterson.

 

First of all – what is Down for Love?
It’s a TV series that will follow six people living with Down syndrome on their quest for romance. At its heart it’s about diversity, and love. People with Down syndrome need to be treated and respected equally. Our search for love is universal – no matter who we are.

What is your role in the production?
I am the Series Producer which means I oversee the series. I’ve brought a team on board who have been doing an excellent job, and then I supervise it creatively and otherwise. I’m working alongside Dan Buckingham who is the Executive Producer (and also the CEO of Attitude). 

How did you get involved in Attitude yourself?
I’d just moved from Wellington to Auckland having finished work on my feature documentary, Finding Mercy, and was looking to do some directing work up here. I did about a year freelancing for Attitude then worked on some other projects, but always maintained a connection with Attitude. When COVID-19 struck at the start of 2020 I was in the middle of directing an episode. There was a sudden shift for the whole industry – we had to work out how we could carry on      delivering episodes and relevant content under those circumstances. I took on some of that task for Attitude and ended up as Series Producer. When the idea for Down for Love came along, it made sense to take that on too.

What do you like about working for Attitude?
I like the kaupapa of Attitude as a disability-led organisation, and an organisation that puts disability first; putting people in the lead of their own stories as participants rather than telling stories about people living with a disability. When I work in any capacity, I always like what I do to feel like it has meaning and purpose and a positive impact in some way, shape or form. And that can vary – it doesn’t mean I don’t work in forms that are pure entertainment – but it is important to me that what I do has integrity. There’s a purpose in putting it out there into the world. Attitude is a really nice space to work in in that regard because it’s documentary in style, we do full half-hours so there’s time to do good story-telling, and it has value in the community. 

Where did the idea for Down for Love come from?
It was really organic. Robyn Scott-Vincent who runs the company had an idea to do something in the realm of dating, and then the concept developed over time as a collaboration of the creatives involved. We were interested in that universal experience of love and how much everyone needs and desires connection – whether that’s romantic love or close friendship or whatever that may turn out to be. There’s a misconception that those living with an intellectual disability don’t have the same needs or wants or desires, which of course isn’t true. We were looking at doing something that was fun and uplifting, but also educates an audience along the way.

Has COVID-19 been a factor in much of the production?
When the concept was developed, we were focused on Down syndrome specifically because of 2021 coming up and were investigating all kinds of ways we could do content relating to Down syndrome. We also did the ‘T21’ digital series, and we incorporated a considerable amount of Down syndrome content into our 2021 series. Down for Love was the biggest thing we had planned, and it was originally scheduled to air in 2021, but due to COVID-19 that has been pushed back into 2022.

In terms of filming, we were actually really lucky as the vast majority of our filming was done when there was no COVID of any type in the community in New Zealand. We as a country have been incredibly lucky and also had great leadership in that regard and so we’ve been able to live relatively COVID-free for two years while the rest of the world was facing it. We get asked this question a lot by international groups as this was launched at MIPCOM which is the major international market for      television. It’s only our final two episodes that have been filmed during a different phase, post-Omicron, and so we’ve had to look at those really differently.

We film under Screen Safe Red Protocol guidelines, our crew have firm guidelines, and our final dates after the lockdown hiatus have been filmed under strict protocols.

Where did the name Down for Love come from?
We wanted to reference Down syndrome and also describe what the show was in a fun but respectful way. We didn’t want to go with a sensational title like you sometimes see. Attitude is a disability-led organisation and getting language right is really important to us. The title felt appropriate and fun, – many of our participants have described themselves as being “down for love”. 

What’s been the most challenging part of the production so far?
The first episode of any brand new series is always enormously challenging because there’s no template for it. You might have references you’re inspired by, but you’re carving new territory. The team goes out and films and gets certain things, but it’s always in the edit suite of the first episode of a new series that the real work happens. That can be a really challenging process for everyone involved: series producer, director, and editor. There are a lot of things to get right with this one that were really important to us to get right. There’s the balance of being a TV show that has to work for a mainstream television      audience, but it was important to us that it also worked for the community, that it maintained its integrity, that it maintained Attitude’s kaupapa of being disability-led and people in control of their own narrative, and that it had an educational purpose at the same time as being a good show to watch. I would say apart from Omicron that is definitely the most challenging part – the edit of the first episode. We’re incredibly pleased with the result though and how it’s come together. We’re really proud of the show.

How have the community been involved in the process?
NZDSA has been directly involved; they’ve watched episodes and given us feedback and been more actively involved in the consultation process, including helping to find keen participants. Zandra has been amazing, we’ve really valued her input and the consultation with her has been really valuable. We had several good conversations ahead of filming and she was great at talking through things we should be mindful of.

Then there are the many organisations we’ve reached out to far and wide – such as UpsideDowns who’ve been really helpful. Any organisation that’s related to Down syndrome and intellectual disability that we can think of including, private residential organisations, activity-based services, workplaces that employ people with disabilities… We’ve also engaged with the community on social media, which is where the regional DSAs have supported us too with posts and casting calls.

We worked with a lot of Duty-of-Care protocols, as we didn’t want anyone to feel under any undue pressure. Being on camera can be intense and we wanted to make sure people felt comfortable and were able to have these experiences and enjoy them for what they were. So in terms of our timing and how we worked, we always had that in mind. We made counselling available to participants if they should want it either during or after filming. No one’s taken it up yet but it has been made clear that it is on offer. We always make sure that where possible somebody else is with the director so they can be keeping an eye on people’s wellbeing throughout, and we’ve always made sure participants have the choice to travel with a companion: a parent or sibling or friend. So Duty-of-Care has always been a big consideration throughout. 

How do you match the dates? What are you looking for?
This comes down to our wonderful researchers. We’ve had Justin Scott for the first part of the series who also works as a director for the main Attitude series and who directed the T21 digital series. It turns out Justin has excellent match-making instincts which we feel he should capitalise on somehow! For the second part of the series we’ve had Daniella Baldock who’s a fantastic researcher as well, originally from the UK. Both of them have done an amazing job. And then in the later stages I’m involved in that process as well. We pre-interview people on zoom so we’re able to look at those interviews and make decisions from there, and have a chat about who might match well with who. What we’re keen to know is what they’re looking for in a partner, what level of seriousness they’re wanting in a relationship, and what their interests are. Like you would with any matching, that’s what we’re looking for. Also, one of the things I really wanted to look at in this series is what people are doing already in their efforts to connect and find people, and to work with them along those lines as well. So it’s providing a little bit of help more than artificially creating a connection.

We’ve been working New Zealand-wide. We’ve tried to find matches close to home when we can, but it’s not always possible, and sometimes that’s actually led to some really great experiences. For those outside of main centres, it can be harder to meet a wider circle of people.

Not everyone in the show necessarily has Down syndrome is that right?
No. All of our main participants are living with Down syndrome, that’s key as it’s a show that’s based in the world of Down syndrome, but it’s open in terms of people that they date. All of them are living with an intellectual disability but not necessarily Down syndrome. So we have a whole spectrum in there amongst our dates from Global Developmental Delay to Williams’ syndrome and others.

Have there been some successful matches?
There have been more successful matches than we could have imagined! I would say our researcher may have a new career as a matchmaker. Yes, we’ve had a lot of successful matches and a lot of great connections between people even if they haven’t gone on to be a long-term romantic match. That’s all I’ll say!

What do you think the wider public will enjoy the most about watching it?
I think they will enjoy getting to know the people involved. One of the things that was really important to us in doing this show was to show the diversity within Down syndrome. There’s that misconception within disability that people get lumped into categories. You have references to people living with Down syndrome as though that’s just one thing. But of course there’s a huge diversity within Down syndrome just as there is anywhere, and one of the things we wanted to show was different personalities – and that really comes through. There are some amazing people living extraordinary lives and I think that’s the thing we’ve taken the most pleasure in, is really bringing that to the screen and it’s wonderful to watch.

What do you hope comes across to those watching it?
I really hope that people come away with a better understanding of Down syndrome and that they may be more aware of people in their communities living with Down syndrome and other intellectual disabilities – that they may be more cognisant of their rights and needs.
That there are certain things in life that are universal, and we are more similar than we are different.

What will Chat21 readers enjoy about it?
I hope that people within the community will enjoy seeing themselves on screen in a positive way, and will enjoy relating to the people that they do see, and that it might inspire them to follow their own love journeys.

Will there be more than one season?
We very much hope so! We can’t confirm that yet but we’d love to think so     

Finally, why do you think we’ve both ended up working with the Down syndrome community?
I really don’t know, but I would say it’s a wonderful coincidence! 

Image: Robyn Paterson with little sister Sarah Paterson-Hamlin, little brother Keith Paterson, and her nephews, Ezra and Lonan

Down for Love premiered on the 9 May 2022 at 8:30pm on TV2 and will be available to watch on TVNZ on demand.

Breakfast TV’s John Campbell did a wonderful segment for World Down Syndrome Day interviewing Lily Harper and NZDSA National Executive Zandra Vaccarino.

You do not want to miss New Zealand’s biggest Down syndrome video call on March 21.

The theme of this year’s World Down Syndrome Day, is “What does inclusion mean?” which we would also like to expand to” What do I want in the future?”.

This year the NZDSA is calling on you to tell us what inclusion means to you or what you want for your future.

We invite people with Down syndrome, their whānau, carers, support people and anyone else in our community to share with us your thoughts and aspirations — this could be by sending us a video, a written message, a photograph or even a drawing!

We will be sharing your stories on social media over the next three weeks and asking a few of you to speak at The Big Connect.

You can send the NZDSA messages on Facebook or email us at [email protected]

While our people are spread throughout all corners of Aotearoa and unable to connect in person, we believe The Big Connect will be a great way to celebrate our community and ensure we are all together to celebrate World Down syndrome Day.

The Big Connect is Back – Monday 21st March 2022 at 7pm

In 2021, the New Zealand Down Syndrome Association hosted the first BIG CONNECT, the country’s largest zoom call, to celebrate World Down Syndrome Day. Join us on Monday the 21st March at 7pm for another star-studded zoom event as we explore Inclusion means# the 2022 theme for World Down Syndrome Day.

Topic:     Big Connect

Date:    21 March 2022

Time:    07:00 PM

Join Zoom Meeting

Meeting ID: 861 9763 8020

Passcode: 988116

Other Online Events to Mark World Down Syndrome Day

Down Syndrome and Autism Spectrum Disorder – A dual diagnosis. Thursday 24th March at 7pm 

This session will include the launch of a new digital resource “Down Syndrome and Autism Spectrum Disorder”.  This digital resource is presented by Geraldine (Dina) Whatnell and she provides an overview, offers information, shares insights and demonstrates best practice when supporting people with Down syndrome and Autism Spectrum Disorder.

This online session will also include a Q&A time with Geraldine.

Geraldine Whatnell is the Nurse Practitioner Mental Health and Addictions Service, Palmerston North Hospital. Geraldine brings with her nearly forty years of professional skills and knowledge in the specialist area of developmental disabilities (intellectual disabilities and/or Autism Spectrum Disorder) and mental health.

Topic: Down Syndrome and Autism Spectrum Disorder – A dual diagnosis

Date:   24 March, 2022

Time: 07:00 PM Auckland, Wellington

Join Zoom Meeting

Meeting ID: 861 9318 1571

Passcode: 034268

Writer/director Linda Niccol is delighted to have her feature film Poppy selected for the 28th edition of Slamdance Film Festival in Park City, Utah in January and regrets that COVID travel restrictions will prevent her from donning her snow-boots and attending in person.

Linda joins a range of illustrious Slamdance alumni who had early films selected by the festival including Bong Joon Ho (Parasite), Rian Johnson (Knives Out), Ari Aster (Midsommer), Lena Dunham (Girls), Jon M. Chu (Crazy Rich Asians) and Christopher Nolan (Dunkirk).

Slamdance self describes as anti-algorithm. It’s a festival “by filmmakers for filmmakers” known for challenging the status quo, for discovering overlooked talent and unique voices.

Poppy was selected from the over 1500 feature films submitted this year. It will feature in the small Unstoppable selection.

Slamdance President and co-founder Peter Baxter identifies a focus this year on “storytellers who are changing the media narrative and elevating the art of independent film “. The Slamdance Unstoppable section is programmed by alumni with visible and non-visible disabilities – an initiative “aiming to eliminate prejudices and gate-keeping that have historically kept disabilities from being represented in the entertainment industry”.

Poppy is played by Libby Hunsdale. Her portrayal of a young woman with Down syndrome who takes control of her life in order to follow her dreams, has been singled out for praise – as has her onscreen chemistry with fellow performers Ari Boyland, Seb Hunter and Kali Kopae.

Poppy was filmed in Kāpiti in 2020 (before and after lockdown) and released in New Zealand cinemas this year where it enjoyed a 14-week release and a 4-week slot in the top 10 at the box office.

It is produced by Robin Laing and Alex Cole-Baker and funded by the New Zealand Film Commission’s 125 Fund (celebrating 125 years of women’s suffrage in NZ), by TVNZ, NZonAir, IHC Foundation and private philanthropic funders.

Poppy has previously screened at three international film festivals – CinefestOz, Cinemagic Belfast, and LAFemme where it was a finalist for Best Feature.

 

 

 

When:  Saturday, 9th October 2021

Time:    10am – 11am

Where: Zoom

Who:    Sir Robert Martin

What will he talk about?

From Institution to Knighthood

 

A little more about Sir Robert Martin

Sir Robert has spent his life advocating on behalf of disabled people and in particular people with learning disability, both in New Zealand and around the world

Sir Robert was New Zealand’s nominee for the Committee for the United Nations Convention of the Rights of Persons with Disabilities and was successfully elected to this role in June 2016. He has completed his first four-year term as an Independent Expert and was re-elected for a second term  which started in 2021.

Sir Robert received his knighthood in January 2020 for his achievements and it is believed that he is the first person with a learning disability to have received such an award.

 

 

When:   Thursday,  14th October 

Time:    7pm – 8pm

Where: Zoom

Who:   Erika Butters

What will she talk about?

Supported Decision Making – a Human Right

Everyone has the right to make decisions, and everyone has the right to access support to make those decisions. This workshop will help you understand Supported Decision Making in New Zealand and the rest of the world. It will also help you understand who may require decision making support and give suggestions on how to practice supported decision making. The workshop will also talk about capacity, will and preference, and safeguarding.

A little more about Erika

Erika works as the Director of The Personal Advocacy and Safeguarding Adults Trust. She wants all New Zealanders to have their rights and well-being protected and promoted. Erika has worked to make independent advocacy and support for decision making available to all disabled people in New Zealand. Erika works and lives in Wellington.

 

When:  Thursday, 21st October 2021

Time:    7pm-8pm

Where: Zoom

Who:    Dr Mark Sinclair

What will he talk about?
Managing your feelings

A little more about Dr Mark Sinclair

Dr Sinclair is a registered psychologist with 40 years of experience in clinical psychology in New Zealand and Canada. He has worked in a variety of mental health services within the public and private sectors, specializing in developmental disorders and challenging behaviour.

He continues to have a private clinical practice in Auckland and Thames which includes forensic assessment for the Family Court and reports in relation to immigration matters.

 

When:              Thursday, 21st October 2021

Time:                7pm-8pm

Where:             Zoom

Who:                Meet all the Stars

What will they talk about?

They will tell us why they got an award or a nomination for an award?

They will also share with you how they create a great life.

 

Joining this star cast

Libby Hunsdale – actor in the movie Poppy

Michael Holdsworth – member of the New Zealand Order of Merit

Rochelle Waters – NZDSA National Achievement Award

Amelia Eades – NZDSA National Achievement Award

Jacob Dombroski – NZDSA National Achievement Award

Luka Willems – nominated for the Attitude Youth Award

Lily Harper -nominated for the Attitude Creative Award

Carlos Biggemann – nominated for the Attitude Creative Award

Bradley Lewis – nominated for the Attitude Enterprise Award

Alfie Linn – nominated for the Attitude Sporting Endeavour Award

 

 

You do not want to miss this.

Make sure you check out the long list of world-leading presenters, who will cover most key topics that may be important to people with Down Syndrome as part of the NZDSA Virtual Down Syndrome Conference.

REGISTER HERE

The NZDSA this month will celebrate its 40th anniversary by hosting the largest Virtual Down Syndrome Conference ever organised in this country, to coincide with World Down Syndrome Month.

The virtual conference will offer a stunning variety of high-profile Kiwi and international expert speakers who will cover a wide range of topics including education, health, speech, relationships, ageing and legal issues.

The conference will have several presentations focused on health with Andrea Simonlehner from Natural Equilibrium doing two sessions on gut health and fussy eaters, while Geraldine Whatnell will share her expertise on growing old with Down syndrome.

One session that will be exciting to parents as well as younger adults with Down syndrome will be relationship expert Dave Hicks talking about the theory and practicalities of getting into a relationship. Dave is likely to become a familiar face on New Zealand television as he was the expert on the upcoming television series Down With Love.

One of the speakers from the United States will be Kavita Krell from Massachusetts General Hospital who will explain how you can develop an innovative online health plan from anywhere in the world, while her colleague Dr Brian Skotko will do a presentation about and for siblings of people with Down syndrome.

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The conference will also offer sessions wellbeing, speech therapy, advocacy and educations, so there will be there something for all stages of life and every member of our community.

The conference will also include a number of sessions specifically for people with Down syndrome, so for the full list of those events, please click here (all these sessions are marked in orange below).

The NZDSA has hosted many conferences, seminars and workshops during its history, but geographical and financial restraints often restricted the number of people who were able to attend.

All those barriers have now been removed by modern technology and the new digital skills we have learned during lockdown.

With modern video conferencing technology, there is no reason to miss out so keep an eye on our E-new and Facebook page for upcoming details how to register.

To get all this information, make sure we can send you our newsletters, so please register your details on the NZDSA website FOR FREE, at www.nzdsa.org.nz

Some sessions will be recorded as a future resource, but many others will not, so make sure you do not miss out on the webinars you are interested.

The NZDSA is non-for-profit charity that receives no Government funding and fully depends on grants and donations, so when you register or think the webinars are of value to you and your community, please remember to make a donation, so we can continue to offer these services to raise the awareness and knowledge around Down syndrome.

REGISTER HERE

 

THE FULL PROGRAMME OF THE VIRTUAL DOWN SYNDROME CONFERENCE

Tuesday 5th October, 7pm – 8pm

Bridget Snedden, President of Down Syndrome International(DSi)

Theme: Wellbeing and Rights

Title:  Getting to the good life – The importance of having a vision

Audience:  Everyone

 

Wednesday 6th October, 7pm – 8pm

Dr Mark Sinclair, Private Practice

Theme: Wellbeing

Title: Keeping an Emotional Balance (At home with children and teens)

Audience:   Parents, whānau, professionals – all ages

 

Thursday, 7th October, 7pm – 8pm

Trish Grant, Director of Advocacy IHC

Theme: Education and Rights

Title: Are we there yet?

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Saturday, 9th October, 10am – 11am

Sir Robert Martin

Theme: Rights and Wellbeing

Title: From Institution to Knighthood

Audience: Everyone

 

Tuesday, 12th October , 7pm – 8pm

Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

Title: Supported Decision Making – a Human Right

Audience: Parents, whānau, professionals with a focus on youth and adults

 

Wednesday, 13th October, 7pm – 8pm

Dr Maree Kirk, Director, STPDS NZ

Theme: Education

Title: Individual Education Plan – The capabilities approach

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Wednesday, 14th October, 12pm-1pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Brain and Gut Health for people with Down syndrome

Please note this session will view the recorded session hosted in September (there will be no Q&A)

It will be beneficial to view this for the session with Andrea on the 27th October

Audience: Parents, whānau, professionals – all ages

 

Thursday, 14th October, 7pm – 8pm

Who: Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

What: Supported Decision Making – a Human Right. 

Audience: People with Down syndrome

 

Saturday, 16th October, 10am – 11am

Dr Brian Skotko,  Director of the Down Syndrome Program at Massachusetts General Hospital

and Susan Levine, Co-founder and social worker at Family Resource Associates, Inc.

Theme: Siblings 18+

Title: Adult brothers and sisters of siblings with Down syndrome: Exploring past experiences and current roles

Audience: Siblings 18+

 

Tuesday, 19th October,  7pm – 8pm

Fiona Kenworthy, Speech & language therapist

Clinical Director /Small Talk Therapy

Theme: Speech and Language Therapy

Title: Early literacy skills for children with Down syndrome – Families making a difference

Audience: Parents, whānau, professionals with a focus on early literacy skills (not age specific)

Hosted by UpsideDowns Education Trust and the NZDSA

 

Wednesday, 20th October, 7pm – 8pm

Dave Hicks, Academic Programme Manager – Unitec

Theme: Wellbeing

Title: Relationships – Theories and Practicalities

Audience: Parents, whānau, professionals – all ages

 

Thursday,21st October, 12pm -1pm

Gretchen A. Good, PhD, Senior Lecturer in Rehabilitation and Disability Studies, Massey University and Jane Lee, MSW, Tutor in Rehabilitation and Disability Studies, Massey University

Theme: Wellbeing and Rights

Title: Parenting during a pandemic:  Have any lessons been learned?

Audience: Parents, whānau, professionals – all ages

 

Thursday 21st October, 7pm – 8pm

Who: Dr Mark Sinclair, Private Practice

What:  Managing your feelings

Audience: People with Down syndrome

 

Saturday, 23rd October, 10am – 11am

Kavita Krell, Director of Customer Experience for Down Syndrome Clinic to You (DSC2U)

Theme: Health

Title: DSC2U: An online personal care plan for caregivers and primary care physicians

Audience: Parents, whānau, professionals  – all ages

 

Tuesday, 26th October, 7pm – 8pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Fussy Eaters

Audience: Parents, whānau, professionals – relevant for all ages

 

Wednesday, 27th October, 7pm – 8pm

Geraldine (Dina) Whatnell, Nurse Practitioner Mental Health and Addictions Service Palmerston North Hospital

Theme: Health

Title: The Golden Years: Ageing and Down Syndrome

Audience: Parents, whānau, professionals – focus on adults who are 25+

 

Thursday, 28th October, 7pm – 8pm

Who: Libby Hunsdale, Michael Holdsworth, Rochelle Waters, Amelia Eades, Luka Willems, Lily Harper, Carlos Biggemann, Bradley Lewis, Jacob Dombroski, Alfie Linn

What: Meet the Stars!

Audience: People with Down syndrome, but others are welcome to join

 

Saturday, 30th October, 10am – 11am

Dr Maree Kirk, Director, STPDS NZ

Theme: Education/Wellbeing

Title: Making visions work – Social skill development for identity across the lifespan

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Many familiar faces in the Down syndrome community have been named as finalists in this year’s Attitude Awards to recognise their amazing achievements.

The Down syndrome community has been well presented in five different categories and the winners will be announced at a gala dinner on December 1.

The NZDSA congratulates all the nominees and wishes them all the best for the awards ceremony.

The nominees from the Down syndrome community are:

Attitude Enterprise Award

Bradley Lewis from Invercargill runs his own business, K9 Munchies, making dog treats. Selling online and locally in Invercargill, Bradley is looking to expand his brand nationally to continue the journey to his own financial freedom.

Attitude Youth Award

Luka Willems is on his way to becoming an influencer in his community, to inspire and encourage others. He’s a YouTuber with some of his work being used by local and international Down Syndrome Associations and he represents Canterbury as a Para swimmer.

Attitude Creative Award

Carlos Biggemann is an internationally recognised photographer, who also writes poetry. He’s collaborated with 14 poets to create a book featuring his photography.

Lily Harper’s big passion is acting, recently taking on the lead role in “Up Town Girl”, performing in Palmerston North and Wellington. The show won three awards, with Lily taking the “emerging actor in a play” award.

Attitude Sporting Endeavour Award

Alfie Linn is a popular competitor in the Table Tennis community, and has represented New Zealand at international level. He loves feeling part of a team, is a great sportsman and his attitude to others, no matter who they are, is fair and just and he loves competing at all levels. 

Attitude Community Champion Award

Sarah Ferens as a teenager started a weekly social group for young people with Down syndrome, to help her sister Emma make friends. Using her disability knowledge, she created ‘A Family Collective’ which supports families and their young people to work and live independently.