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.

On October 27, at 7pm, Geraldine will host a live webinar as part of the NZDSA 40th Anniversary Virtual Down Syndrome Conference in which she will answer questions from our community. We suggest you watch the video first before you sign up for the webinar. (Click here to sign up) .

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 .

 Click here to sign up for the webinar on October 27.

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.

 Click here to sign up for the webinar on October 27.

The New Zealand Down Syndrome Association (NZDSA) sends a heartfelt message of gratitude to Her Excellency Dame Patsy Reddy for her support as the Patron of the organisation as it marks the start of Down Syndrome Awareness Month.

This week  is the start of a month of celebrations to mark the 40th anniversary of the NZDSA, who have supported families and advocated for people with Down Syndrome since 1981.

Dame Patsy last week finished her term as Governor General and NZDSA President Kim Porthouse says that the 40th anniversary of NZDSA is a terrific opportunity to also mark the wonderful contributions by its distinguished Patron.

“On behalf of all our members, staff and the wider Down syndrome community, we want to send a genuine message of thanks to Her Excellency Dame Patsy Reddy and we would like to wish her every success in her future endeavours,” says Porthouse.

The NZDSA President says that her community has appreciated Her Excellency partnering with the NZDSA to promote its vision that people with Down syndrome are respected, valued and equal members of their community fulfilling their potential and aspirations.

“What has also been notable is the way she leads by example, always showing genuine warmth and respect when engaging with people with Down syndrome and our wider community,” says Porthouse.

“Dame Patsy’s participation in the work of the NZDSA has assisted to change the attitudes and perceptions of the wider population, so that communities are more welcoming and include people with Down syndrome.”

Porthouse is particular grateful for the Governor General hosting the annual National Award ceremonies and presenting the Achievement Awards to people with Down syndrome.

“Being able to come to Government House and be hosted by the Governor General acknowledges the significance of these national achievements and serves to convey the important message that people with Down syndrome are worthy and contributing members of their community,” says Porthouse, adding that Her Excellency’s support of World Down Syndrome Day has facilitated greater awareness about the aspirations and abilities of people with Down syndrome.

The NZDSA started from a humble coffee group in Auckland in 1981 and will mark its 40th anniversary with the largest Virtual Down Syndrome Conference ever hosted in New Zealand.

The conference will offer webinars throughout October to cover a huge variety of important topics around health, employment, decision-making, relationships and well-being.

Porthouse says that the scope and variety of the webinars is unparalleled in the NZDSA’s long history and the conference is a significant event to mark this milestone month.

“It will also be a wonderful opportunity for the Down syndrome community to connect, support each other and focus on ensuring people with Down syndrome realise their aspirations and lead full, meaningful lives within their communities.”

For the full programme and to register, please go CLICK HERE.

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

 

The New Zealand Down syndrome community is urging people with Down syndrome not to let the traumatic events in Mt Albert stop them from seeking independence and to be at the heart of their communities.

“We are heart-broken for Lena Zhang Harrap’s whānau and friends and we hope that the wider community will continue to surround them in love,  support and respect their wishes to grieve in private,” says Zandra Vaccarino, the National Executive Officer of the New Zealand Down Syndrome Association.

“Lena’s death has shocked our community to the core and many parents have expressed increased fear and anxiety about giving their children with Down syndrome the independence any person deserves.

“We totally understand this sentiment, but we want to encourage all families not to give into this fear by keeping their loved ones at home.

“The reality is that this horrific incidence is an anomaly in New Zealand and we know that a person with a learning disability is safer in an inclusive community where they can fully participate in all aspects of life,” says Vaccarino, also speaking on behalf of the UpsideDowns Education Trust, ADSA and Down Syndrome International (DSi) who are liaising to best support their community.

Vaccarino says Lena was a wonderful example of someone who was fully immersed in her local community.

“This crime has sent shock waves through New Zealand as we grapple with the fact that a perpetrator targeted Lena because of an imbalance in power,” says Vaccarino.

“Leading a full independent life is a human right for disabled people and inclusive communities are safer and healthier communities.”

On Friday night the NZDSA, ADSA, the President of DSi and the UpsideDowns Education Trust hosted a national zoom call where families were able to share and talk about their shock and anxiety and will continue to look at ways to give families and people with Down syndrome support and reassurance.

The NZDSA in October 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 New Zealand Virtual Down Syndrome Conference will be offering a huge 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 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 newsletter and Facebook page for dates.

The NZDSA is in the process of finalising the programme and will share the experts, the topics and dates once they are locked in.

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

And if you do happen to miss a webinar of your interest, many sessions will be recorded and made available as a valuable future resource.

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.

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.

 

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