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.

REGISTER HERE

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.

 

UpsideDowns, New Zealand Down Syndrome Association, and Small Talk Therapy, are proud to bring you this free webinar on speech and language therapy for children and young people with Down syndrome.

Are you looking for ways to support your child’s speech during lockdown?

Are you new to speech and language therapy?

Have you been engaging with speech and language therapy for a long time but are looking for new ways to engage with your child’s communication journey?

Are you frustrated or confused by what public speech therapy is being provided? Are you keen to start with speech and language therapy but don’t know where to begin?

If you’ve answered yes to any of these questions, then this webinar is for you!

Fiona Kenworthy, a specialist in speech and language therapy for children with Down syndrome, Sarah Paterson-Hamlin, CEO of UpsideDowns, and Zandra Vaccarino, National Executive Officer of the New Zealand Down Syndrome Association, are answering questions from over 100 families, followed by a brief presentation by Fiona on some tips and tricks for lockdown SLT.

 

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!