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

Media release – World Down Syndrome Day highlights barriers to full inclusion

New Zealanders with Down syndrome continue to face unsurmountable barriers stopping them from being fully included in their community.
“The reality for people with Down syndrome in 2022, is that they still face daily battles to fully participate and contribute to society,” says Zandra Vaccarino, the National Executive of the New Zealand Down Syndrome Association (NZDSA).
The global theme for this year’s World Down Syndrome Day (WDSD), on March 21, is #Inclusion Means.
“The theme was chosen to make people consider and understand what full inclusion actually means,” says Vaccarino.
“Inclusion can mean a lot of different things for people with Down syndrome, but also for the people around them. What inclusion looks like should always be considered in the human rights framework and then one should explore how one can be inclusive in all aspects of life including employment, education, sport, arts, community participation and social events.”
Vaccarino says that by signing the UN Convention on the Rights of Persons with Disabilities, New Zealand has obligations to uphold the intent of the UNCRPD but this has not translated into full community participation, or the privileges and rights other Kiwi citizens may take for granted.
“Inclusion is not just having people with Down syndrome present in our schools, our streets or our malls. It means that we need to give them equitable access, so they have real access and support where needed to fully participate in all parts of our society,” says Vaccarino, who hopes that this year’s campaign will encourage New Zealanders to take stock and see how they can better include people with Down syndrome in their schools, work places, sports teams and social events.
This year, Covid 19 restrictions have again stopped Down syndrome groups around the country from hosting their usual WDSD celebrations, so the NZDSA has pulled together a mega-online community event, The Big Connect, which on Monday night will host a who’s-who from the disability sector.
The Big Connect will be opened by the Minister for Disability Issues, the Honourable Carmel Sepuloni, before she hands the stage to the President of Down Syndrome International, Bridget Snedden, and Paula Tesoriero, the Disability Rights Commissioner.
Snedden and Tesoriero will then be part of an intriguing panel of high-profile experts and advocates around human rights, education, employment, sports and arts to discuss the WDSD theme #Inclusion Means.
Vaccarino says that Covid restrictions last year forced the NZDSA to come up with the first Big Connect, which turned out to be a huge success.
“Last year, over 100 families from all over the country joined us and they were all really excited about being connected.
“People with disabilities are often more isolated than others during the pandemic, so we really hope that we get an even bigger turnout this year.”
“We are incredibly proud and grateful to host such an amazing group to share their ideas and experiences around inclusion and we hope the discussion will be an inspiration for people with Down syndrome and the wider community,” says Vaccarino.

For more information, contact Zandra Vaccarino on 021-1587150.

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.

 

 

 

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.

 

Bridget Snedden from Auckland was last week recognised for her years of advocacy work around the world when she was elected as the new President of Down Syndrome International (DSi) at their 2021 Annual General Meeting.

“I am very humbled and proud to lead DSi Board of Trustees along with Vice President Rhonda Faragher from Queensland,” says Bridget who been a Trustee of DSi since 2008 and in recent years filled the role of Vice-President.

Bridget has been heavily involved in the Down syndrome movement at a local, national and international level since her son Alex was born in 1988.

After first joining her local Auckland association for support, she found herself on the Auckland committee a few years later.

At a meeting at the IHC office in Wellington, she met Cindy Johns where they hatched a plan and approached JB Munro to support them in rebuilding the New Zealand Down Syndrome Association, which at that stage was in abeyance and needed a new impulse.

The NZDSA was soon re-established and from 1993 until 2000, Bridget acted as the Executive Officer of the NZDSA.

The new DSi Presidents lives by the motto “You breathe, You belong” and is driven by her commitment to social justice.

“I believe that every New Zealander has the same right to live and enjoy life like their neighbours and friends,” says Bridget, who has had significant experience across the disability sector in both governance and delivery.

Bridget says she is proud to have been able to contribute to the change that many families of disabled children have made, so that their children can live a good life.

NZDSA National Executive Officer Zandra Vaccarino says Bridget’s appointment is a wonderful recognition for the work she has done for the Down syndrome community in New Zealand and abroad.

“Bridget has been a driving force behind the NZDSA for many years, and the wider Down syndrome community in New Zealand and abroad, so I think we can all feel very proud to have one of our own community leading the amazing work DSi does all over the world to improve the life of people with Down syndrome,” says Vaccarino.

 

 

 

Launching at the Tokyo 2020 Paralympic Games, WeThe15 plans to initiate change over the next decade by bringing together the biggest coalition ever of international organisations from the world of sport, human rights, policy, communications, business, arts and entertainment.

At a time when diversity and inclusion are hot topics, the 15% who have a disability want effective change to remove the inequality and inactivity. Like race, gender and sexual orientation, we want to have a movement all persons with disabilities can rally behind. A global movement that is publicly campaigning for disability visibility, inclusion and accessibility.

WeThe15 will shine a light on 15% of the world’s population. It will build greater knowledge of the barriers and discrimination persons with disabilities face on a daily basis at all levels of society. By doing so we will break down these barriers so all persons with disabilities can fulfil their potential and be active and visible members of an inclusive society.

For more information go to: www.wethe15.org

 

 

Amelia Meades was recognised at the National Achievement Awards for her incredible accomplishments in 2019.

 

The year 2019 was most definitely the year of Amelia.

It kicked off in February with Amelia attending a four day “Making it on my own” (MIOMO) course with about 30 other teenagers and young adults.

The course is offered to under 25s and aims to increase independence and support the transition to adulthood and resulted in a noticeable shift in Amelia’s view of herself.

 

But in terms of taking responsibility for her own development, this event was far outshone by Amelia’s decision a few months later to tackle head-on her long-term and debilitating needle phobia. Blood tests, vaccinations, dentists, everything that involved needles was a trial.

With a safari trip to Kenya planned for the end of the year, Amelia undertook a graduated exposure therapy at Anxiety Trust that culminated in a visit to the local doctor’s clinic to get up close and personal with some needles.

Amelia made a conscious decision to take part in the therapy in order to help herself and the therapist said that her engagement with the process was the key factor that led her to the point where she was able to receive her six vaccinations for Kenya without a qualm.  Her family were so proud of her – no more needle phobia for Amelia!

The five-week trip to Kenya and Australia with her family was reward in itself. Glamping in safari conditions and viewing the wonderful animal life.

Fortunately Amelia loves taking photos so she will have memories she can revisit for years to come.

Quickly following on from this though was the most exciting event of the year for Amelia and a significant achievement for a person with Down syndrome.

She was chosen from a large cast of wannabe models to walk in the NZ Fashion Week for an upcoming, edgy label called “Starving Artists Fund”.

To be selected required walking out alone in front of a bank of selectors with clipboards and cameras. Not for the faint hearted, but Amelia strutted her stuff like a pro, both in the casting and again in the fashion show at the Auckland Town Hall a few weeks later.

Subsequently she has had a couple of follow-up gigs, one being an article and photo shoot for Good magazine.  Look out for their September issue.

She also appeared on TV twice and featured in an article about her agent – Grace Stratton from “All is for All” – in the Air New Zealand on-board magazine.

Talk about the lives of the rich and famous!

But the year’s achievements didn’t stop there.  Amelia progressed so well in her weekly yoga classes across the other side of the city – a train and then bus ride away on a Thursday evening – that by the second half of the year she was invited to join the advanced class.

She also completed two silent residential weekend retreats during the year, both focussed on mindfulness through movement meditation.

 

Amelia was invited by Recreate to represent their Moxie produce team with her friend Abigail at the NZ Disability Services conference in Wellington and the two won for best market stall at the conference.

She helped man the merchandise stall at Buddy Walk for the second year running and was on the Sales Team for Moxie at several markets around Auckland.

Amelia also continued to participate in Special Olympics Aquatics twice a week with the Central Auckland team.

Meanwhile there was also the ongoing activity of completing her studies and working.

Amelia graduated at the end of the year from the two-year New Zealand Certificate in Skills for Living and Working programme at Unitec, achieving Merit in every unit.

In 2020 she continues to work part-time as a waitress and is in the pipeline for a second waitressing job.

She volunteers one day a week at the Titirangi Community Art Gallery where she helps mount exhibitions and supervise visitors, and two other days with Recreate’s Moxie programme, both in the garden and in the kitchen.

It’s a busy life!

 

Jacob Dombroski is an incredibly talented young man. James Webber from the Wellington Down Syndrome Association wrote the following nomination to describe Jacob’s achievements.

Jacob is well known in the Wellington region and nationally.

He has a passion for people with extra needs and is keen to advocate for people at a Government level.

Jacob is an actor, dancer, musician and basketball player amongst other talents.

I first met Jacob in 2016 when he was performing in a show that he had written, choreographed and performed, BigJStylez.

My eldest son, sister and I watched Jacob perform. It gave us such hope and joy and made the future of my youngest son seem much brighter amongst all the medical issues and fears for the future.

Jacob went on to win many awards for his show and this led to other acting, dancing and performance opportunities.

Jacob Domboski with Governor General Dame Patsy Reddy, right, and NZDSA national executive Zandra Vaccarino.

His acting career became viral when he did a short stint acting on Shortland Street as Winston Kimiora. I’m sure this helped to advocate for people who were born with Down syndrome.

His acting must have been fabulous as he was asked to act again as a barman on Shortland street. There have been many reviews about Jacob and his performance and one described him as “totally a performer who is going to connect to any audience”.

I believe this sums up Jacob well. He definitely connected with the audience when he was asked to speak at the Frances Clarke awards in Wellington in 2019.

During lockdown with Covid 19, Jacob contacted the WDSA chairperson, asking how he could help people with extra needs during this time.

He also created a workout video that he shared with others during COVID.

I don’t know all of Jacob’s story and journey however I am keen to learn more about this amazing young man who inspired me and my whanau when I had a little baby who was starting his journey.

The WDSA is blown away by Jacob’s talent, his empathy for others and his keenness to advocate for many different people.