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

Members of the NZDSA are invited to relive the best parts of the Virtual Down Syndrome Conference we hosted in October to celebrate the NZDSA 40th anniversary.

During the conference over 700 individuals and households joined one or more of the 22 events and presentations.

The 34 speakers hosted a staggering 2748 minutes of webinars, Q&A sessions and social gatherings.

Usually, organisations would charge large amounts to be part of such a comprehensive event, but the NZDSA decided to make the conference accessible as possible.

If you or your family enjoyed the conference and gained benefit from the information shared, we would like to ask you to show your appreciation by donating to the NZDSA.

As you can imagine, hosting the conference demanded significant resources from or staff, and we hope you will continue to support the NZDSA to enable us to host more events in the future.

If you missed the conference, the NZDSA has recorded some of the key webinars which are now available to view on our website.

The resources you find on the website are:

The Golden Years: Ageing and Down syndrome

An introduction to the needs of the older person with Down syndrome and how this may affect their health and wellbeing alongside the supports they may need.

Relationships – Theories and Practicalities

This session deals with a variety of issues that face everyone trying to create new relationships, but may be particularly challenging for someone with Down syndrome.

Supported Decision Making – a Human Right

This workshop will help participants to gain a greater understanding of the national and international legal context of Supported Decision Making, who may require decision making support, and the key principles and strategies for extending decision making support

Making visions work

Social skill development for identity across the lifespan.

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

Fiona will share tips for whānau, based on the latest research, about how whānau can set their child up for literacy success.

Individual Education Plan – The capabilities approach

The capabilities approach to a structured plan to explain, recognise, and deliver on all learning opportunities to fulfill goals and achievement for children and young people with learning disability and Down syndrome.

 

Families and whānau of people with a disability have expressed relief, hope and opportunity at the announcement of Ministry for Disability last week.

“The Family Alliance is delighted that disabled people and whānau will guide the establishment of the Ministry,” says Zandra Vaccarino, speaking on behalf of the Family Alliance.

“We welcome that disabled people will have a key role in the Accessibility Governance Board, but want to highlight the crucial role of family and whānau as the strongest advocate for their family member, so it is essential that these allies have a voice on the Governance Board,” says Vaccarino from the New Zealand Down Syndrome Association, one of the partners of the Family Alliance, alongside Care Matters,  Parent 2 Parent, Standards and Monitoring Services and other informal networks.

“The current system causes stress for many families and they have been calling for change for many years,” says Vaccarino.

“Families and whānau have advocated alongside disabled people for decades calling for an independent Ministry for Disabled People, so we welcome the announcement of the new Ministry for Disabled People, and this could address the inequalities and inaccessibility that disabled people continue to face in the current health and disability services,” says Vaccarino.

“It is also important to recognise that not all people with disabilities are able to advocate for themselves, so it is essential that the role of family and whānau advocates are recognised,” says Vaccarino.

 

People with learning disabilities, high and complex support needs and communication challenges are the most marginalised members of our community and Vaccarino says we all need to ensure that their allies who can communicate their needs are able to be part of the co-design process.

Tina Lincoln from Care Matters says that that families are ready and able to partner with disabled people, Māori, and the Crown to make this work.

“The Ministers have listened to our communities and understand the importance of working in partnership,” says Lincoln.

“We believe the new Ministry will create increased opportunities for families and whānau supporting their family members with disability to continue to embrace positive and creative way to work towards a good life.”

Lincoln says that last week’s announcement will hopefully be a move away from a deficit-based system and into a dedicated Ministry that empowers people with disabilities.

 

“In our vision an independent Ministry will have experience and knowledge and work together with disabled people, families, and whānau to enhance the lives of people with disability, which in turn can enhance the lives of the wider family and whānau,” says Lincoln.

She says that an independent Ministry will help ensure the ongoing ‘System Transformation’ will align with the Enabling Good Lives approach.

Enabling Good Lives (EGL) is a new approach to supporting disables people that offer greater choice and control over the supports they receive, so they can plan for the lives they want.

Disabled people and families have been working on the Enabling Good Lives approach for nearly a decade, starting in 2012.

Lincoln says there are multiple examples of where families in the demonstration sites describe the benefits of the Enabling Good Lives approach.

“The national Enabling Good Lives roll out will ensure equity regardless of where people live. Families are celebrating the opportunities to remove barriers and create solutions to live they can create.

“The Enabling Good Lives approach can be life-changing when the Enabling Good Lives principles and approach are applied and in the forefront of our thinking and how we do things.”

Lincoln explains that a key principle of Enabling Good Lives is to start early, and in the early years it is families and whānau that hold the vision for a good life.

 

“We congratulate Minister Sepuloni and Minister Little’s for their courage.”

 

 

 

The NZDSA is extremely pleased we can offer our members an invaluable new resource to learn about the needs of the older person with Down syndrome, as well as a follow-up workshop to answer your questions.

The digital resource The Golden Years, Ageing and Down syndrome is presented by expert Geraldine Whatnell and discusses how ageing may affect their health and wellbeing, as well as supports they may need if they are diagnosed with dementia.

The valuable video offers background on a range of subjects and demonstrate best practice when supporting people with Down syndrome. The subjects include:

(Click here to watch or download the full video).

  • Ageing and Down syndrome
  • Importance of health checks
  • Explores the connection between  Down syndrome and dementia
  • Looks at the myths about Down syndrome and dementia
  • Assessment and diagnosis of dementia
  • Understanding dementia and the stages of dementia
  • Strategies we can use
  • How we can help people with Down syndrome who live with dementia.

Presenter Geraldine (Dina) Whatnell is the Nurse Practitioner Mental Health and Addictions Service Palmerston North Hospital.

Geraldine brings with her nearly 40 years of professional skills and knowledge in the specialist area of developmental disabilities (intellectual disabilities and/or Autism Spectrum Disorder) and mental illness.

Alongside this, Geraldine has a wealth of personal lived experience as her younger brother Mark having a diagnosis of Down syndrome .

Getting older is associated with many changes, both biological and social. For someone with Down syndrome these changes can be particularly daunting and difficult.

There is evidence to suggest that some biological problems related to ageing can occur earlier in people with Down syndrome than in the general population.

The marked improvement in life expectancy for people with Down syndrome (an average of 60 -70 years, compared to an average of 9 years around 1900) also means that the problems relating to the condition and old age are only now being researched and addressed.

Unfortunately,  there are very limited few resources available for families and whānau who support and care for aging people with Down syndrome.

The NZDSA recognises this gap and decided to develop this resource to start filling this void.

In New Zealand there is no strategy or plan to address dementia for the general population therefore there is even less knowledge, information and support for people with Down syndrome.

If you are interested you can read and support this open letter to the Government to be more pro-active in this area.

https://mailchi.mp/alzheimers/stand-with-us-sign-our-open-letter-to-government?e=59bc99ddea

Click here to watch or download the video.

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

 

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

 

 

‘Stand Tall’ is a new app designed to dodge those tricky money situations – like getting to the end of the week and finding there’s no cash left for dinner.

The app is being developed by IHC and online gaming company InGame to make handling money easier for young people with disabilities who want to be independent.

“It’s a character-based game, so you choose your avatar – what you’re going to look like in the game,” says Phil Clarke, IHC Head of Library and Information Resourcing. “The background changes as you make decisions in the game and move around your flat and out to the gym or the movie theatre. As you move through the day there are various choices that have to be made.”

Phil says other characters or situations crop up that challenge what players plan to do and how they plan to spend their money.

Another key aspect of the game is shopping, particularly grocery shopping. Players are asked to decide what they’re going to eat.

Phil says each purchase has a consequence and players can see their available money dropping as they spend. But the consequences are not just monetary. The game has two bars for measuring progress – money and wellbeing. Players can go at their own pace and repeat stages, and a voiceover is available for people who can’t read the screen.

Phil says the idea of a resource to help young disabled people handle money was first discussed two years ago with Merrill and John Holdsworth. The Holdsworth Trust is a longstanding supporter of the IHC Library.

“We wanted to do something with teens with intellectual disability who were thinking of moving out of home. We knew that our initial audience would be people who were tech savvy,” Phil says.

The Holdsworth Trust donated $20,000 in seed funding to explore the idea of an online app with local digital technology company Optimation. Feedback was sought from people with intellectual disabilities and a parent of a teenager.

“It was teasing out what an online application would be and identify what some of the issues were for people who were looking to live independently,” Phil says.

“In the end we came up with the idea that we wanted something fun in the form of a game that would help people with money.”

A brief was written and IHC approached InGame, a gaming developer with a background in interactive training and educational games.

The new app will provide a fun way to help young disabled people handle money.

More money was needed to develop the game, and the timing was right. Post COVID-19, the Ministry of Social Development (MSD) had funding available for initiatives to help people with disabilities stay active and connected in their communities. IHC received $75,000 from the fund.

“We were successful up to a point. We got about half of what we were asking for. Funding from MSD is going to enable us to get to the point of a working prototype, but not a published app. But it will have all of the elements of the game that will be expanded in the published version.”

It will also be something to show potential funders. IHC is now seeking a further $100,000 to finish the project and to make the app free to download.