WDSM VIRTUAL CONFERENCE 2023
Save the date
The NZDSA is pleased to announce that once again we will be hosting the 2023 Virtual Conference to Celebrate Down Syndrome Awareness Month.
We are delighted to share that once again we will be offering free registrations to everyone.
This year the conference will run from the 3rd – 21st October. We will be offering sessions at either 12pm or 7pm. The sessions will be 1 hour long.
We will continue to explore the WDSD theme “With Us Not For Us”. This year the NZDSA is joining the international network to campaign for the right to legal capacity, supported decision-making and easy-to-understand communication. Because of this we will be exploring supported decision-making at the Virtual Conference.
We have a few events that have zoom links and the rest of the programme will require you to register for the conference. The zoom links for these events are shared below and clearly outlined.
Week One Events
Getting to the Good life – The importance of having a Vision
3rd October
7pm
With Bridget Sneddon – President of Down Syndrome International (DSi), Executive Director of Family Network NZ
Theme: Creating a vision – With Me Not For Me
Audience: Parents, whānau, people with Down syndrome and professionals
A rights-based approach to inclusion for all students at school
4th October
12pm
With Trish Grant – Inclusive Education Lead at IHC
This session will examine a rights-based approach to inclusion for all students at school, and the legislation, policy and practice levers needed to achieve a lived experience of inclusive education in inclusive communities. In addition, the session will outline IHC’s legal action, why it’s important, and describe opportunities for engagement with the action and what it would mean to provide evidence in the Human Rights Review Tribunal.
Theme: Education – With Me Not For Me
Audience: Parents, whānau, educators and professionals
What might be Better – Holding a Vision for a Personally Meaningful Future
4th October
7pm
Society has taught us to believe that people with disabilities are incapable. As families, we are guided into this incapability trap by the medical system, the school system, and our social networks. And we remain stuck in this incapability thinking until we can see our loved ones in a different light. To get out of the incapability trap, we must break free of the ‘Special Needs’ narrative and open our mind to the possibility of an ordinary Life. But, here is the catch; no one is going to do this for you. It is your responsibility.
With Lorna Sullivan
Theme: Creating a vision – With Me Not For Me
Audience: Parents, whānau, people with Down syndrome and professionals
Career planning and bringing your skills to the workplace. A guide for job seekers and employers to support more people with Down syndrome into the workplace
5th October
12pm
This presentation will cover off a brief introduction into the work that Kindred and the New Zealand Down Syndrome Association has done to collate research and resources to build resources for our kiwi jobseekers with Down syndrome and support prospective employers to increase their understanding of the benefits of hiring someone with Down syndrome.
With Georgina Kirk and Kate Maroulis – Directors & Registered Organisational Psychologists, Kindred – Psychology at Work
Theme: Employment – With Me Not For Me
Audience: Parents, whānau, people with Down syndrome, educators and professionals
With US Not For Us
You do not need to Register for the conference to be able to join this event.
7th October
4pm – 5pm
STRIVE and STEP-UP members will share how they use their voices to raise awareness about the importance of people with Down syndrome having rights. They will also share the work they do to advocate for the importance of doing things with people with Down syndrome and not doing things for them.
STRIVE MEMBERS:
STRIVE is the NZDSA’s leadership and advisory group for people with Down syndrome.
- Erin Smith
- Abigail Knight
- Mohit Chand
- Vincenzo Vaccarino
- Duncan Armstrong
- Peter Rees
- Rochelle Waters
STEP-UP MEMBERS:
STEP-UP is the NZDSA’s National Self-Advocacy group.
- Andrew Oswin
- Edward Borkin
- Carlos Biggemann
- Jeffrey MacLean
- Emily Thompson
Theme: Creating a vision – With Me Not For Me
Audience: People with Down syndrome, parents, whānau, and professionals
Join Zoom Meeting
https://us02web.zoom.us/j/88952123177?pwd=UWJITXlvSmxBbThSZEJXMlBZQXVzZz09
Meeting ID: 889 5212 3177
Passcode: 005198
Week Two Events
Navigating Work and Income
10th October
12pm
How to navigate Work and Income’s information-packed website for everything you need to know about assistance and support
With Karen Barber – Employment Coordinator, Ministry of Social Development, Work and Income
Theme: Creating a vision – practical supports
Audience: Parents, whānau, educators and professionals
What does helpful supported decision-making look like?
10th October
7pm
In this presentation, Carolyn and Lizzie will talk about what helpful supported decision-making looks like in practice. They will draw on their research and share what people with learning disabilities told them works, and doesn’t work, for them. In this interactive presentation, Carolyn and Lizzie will ask for your input, and to share what works for you.
With Carolyn Stobbs – Project Manager, Consumer Voice, MASH Trust and Lizzie Waring – Cancer Support, Te Whatu Ora
Theme: Supported Decision-Making
Audience: Parents, whānau, educators and professionals
Healthy bowels and bladder
11th October
12pm
In this session Lisa will discuss what normal healthy bowel and bladder function is in our Tamariki. We have to have knowledge about what is normal and how to ensure we keep our kids’ bowels and bladders healthy, especially when they spend longer times away from home and our care.
With Lisa Smith –Children’s Continence Nurse, Children’s Continence Service
Theme: Health
Audience: Parents, whānau, educators and professionals
Early Intervention – Practical suggestions to support your child’s communication development
11th October
7pm
Lee’s presentation will be a very practical discussion on how best to support children’s development when access to Early Intervention may be difficult. She will share tips gathered from her multidisciplinary teams offering suggestions of practical activities or strategies that can be incorporated into everyday home life. Lee will also discuss how to make the most of any support you receive from services.
With Lee Bennetts – Speech-Language Therapist at the Champion Centre in Christchurch
Theme: Early Intervention
Audience Parents, whānau, educators. speech and language therapists and other professionals
Assistive equipment to support independence
12th October
12pm
Assistive equipment can help people live more independently and engage in meaningful activities more easily, thereby creating a greater sense of wellbeing and control over their lives. In this session, I will be talking about the various types of equipment that can support people with Down syndrome to engage in daily living activities.
With Kate Spear – Occupational Therapist and Clinical Services Advisor , Enable New Zealand
Theme: Creating a vision – With Me Not For Me – practical supports
Audience Parents, whānau, educators. speech and language therapists and other professionals
Exploring the need for Adult Legal Guardianship
12th October
7pm
This presentation will explore Adult Legal Guardianship with an opportunity to ask questions. It will also provide a useful framework for presentations that will explore Supported Decision-Making.
With Iris Reuvecamp – Principal, Vida Law
Theme: Legal Capacity and Supported Decision-Making
Audience: Parents, whānau, educators and professionals
Bridging Generations and Perspectives
13th October
12pm
As a SibLeader, I find myself in a unique position between two generations: the camp parents, who are incredible, and the siblings. This position allows me to facilitate collaboration and communication, providing insights from both perspectives and contributing an additional viewpoint.
Parent to Parent’s SibSupport program creates an environment where I can genuinely say, “My brother and I are best friends now.” I share this message with the siblings I work with, assuring them that despite the challenges they face now, it can get better. I am grateful for the circle of support that Parent to Parent provides.
My professional journey, coupled with my personal experiences, has deepened my understanding of the challenges individuals with disabilities encounter while seeking employment and support. It has fuelled my passion for assisting others in navigating the system effectively and finding meaningful employment opportunities. Thank you for the opportunity to share my journey and insights.
With Summer Findlay, Parent to Parent
Theme: Siblings
Audience: Siblings, parents, and professionals
It’s me, Alfie – playroom to podium!
You do not need to Register for the conference to be able to join this event.
14th October
4pm
A talk about how Alfie has overcome prejudice, low expectation and social barriers to become an international sports champion through hard work, family belief, positive encouragement, self-determination, resilience, self-advocacy and a ‘can do’ attitude.
With Alfie Linn – Self Advocate and Jane Linn – Parent
Theme: Creating a vision – With Me Not For Me
Audience: People with Down syndrome, parents, whānau, and professionals
Join Zoom Meeting
https://us02web.zoom.us/j/81807120524?pwd=YmZCd0VEL2RQa1hrSW5tL0VTclI0UT09
Meeting ID: 818 0712 0524
Passcode: 007662
Week Three Events
Exploring Supported Decision-Making
You do not need to Register for the conference to be able to join this event.
16th October
12pm
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.
This presentation will also include how choice and control align to Enabling Good Lives Principles. Hear from community members and whānau.
With Erika Butters, Peter Allen, Dr Carey-Ann Morrison, Apryl Cadman
Theme: Supported Decision-Making
Audience: Parents, whānau, people with Down syndrome, educators and professionals
Join Zoom Meeting
https://us02web.zoom.us/j/85122283664?pwd=bllhVXFvUUliUHFQQnlEVGM3SUZndz09
Meeting ID: 851 2228 3664
Passcode: 116094
NZDSA AGM
You do not need to Register for the conference to be able to join this event.
16th October
7.30pm
Join Zoom Meeting
https://us02web.zoom.us/j/83551947595?pwd=ZjBMUjBaVXZlK2RPRkc4UTg2aUFldz09
Meeting ID: 835 5194 7595
Passcode: 882298
Down Syndrome Clinic to You (DSC2U)
17th October
12pm
Researchers at Massachusetts General Hospital and Harvard Medical School have now created “Down Syndrome Clinic to You” (DSC2U) as a way to bring the latest advances in health and wellness for people with Down syndrome directly to caregivers’ home computers. With DSC2U (dsc2u.org), caregivers complete an online intake form, where they identify current concerns about their son or daughter with Down syndrome. Their responses generate two personalized documents: a plan for caregivers and another one for the primary care providers of their sons/daughters. This workshop will include a demonstration of DSC2U so that all families feel empowered to begin using DSC2U in their own homes.
With Dr Brian Skotko – Emma Campbell Endowed Chair on Down Syndrome Massachusetts General Hospital, Director, Down Syndrome Program
Medical Geneticist, Massachusetts General Hospital, Associate Professor, Harvard Medical School
Theme: Health
Audience: Parents, whānau, and professionals
Constipation
17th October
7pm
This session will go into detail about the complex and often sneaky problem of constipation in children which does not present in the same way as adult constipation. Lisa has 20 years practical experience in managing children with chronic constipation and will share tried and tested methods of conquering constipation.
With Lisa Smith – Children’s Continence Nurse, Children’s Continence Service
Theme: Health
Audience: Parents, whānau, educators and professionals
Dive Beneath the Label of Coeliac Disease
18th October
12pm
This presentation will explore
- Down syndrome and coeliac disease
- Getting diagnosed (symptoms and diagnosis)
- How to eat gluten-free (a gluten-free diet and avoiding cross contamination)
- Shopping guide (reading labels)
- Promoting the conference happening on the 18th of November
With Lisa Jury – Health Promotion Manager, Coeliac New Zealand Inc
Theme: Health
Audience: Parents, professionals and whānau
Empowering your Child’s Journey: The Crucial Role of Speech-Language Therapy for a Fulfilling Life
18th October
7pm
This presentation is aimed at parents of young people with Down syndrome, focusing on the profound impact of speech-language therapy in enhancing their child’s quality of life. The presentation will emphasise how speech-language therapy goes beyond communication skills, serving as a key component in fostering independence, confidence, and overall well-being.
With Victoria Smith – CEO of UpsideDowns Education Trust and Polly Newton – Speech Language Therapist at Speech Teacher
Theme: Speech and language therapy – With Us Not For Us
Audience: Parents, whānau, educators. speech and language therapists and other professionals
Flexible Funding Options
19th October
12pm
This session will be an opportunity to discuss the purpose and use of person-directed funding. This will be an opportunity to learn about all the flexible funding models available through Whaikaha, their general purpose and the guidelines for use, for example understanding the Purchasing Rules. This session will be interactive and an opportunity to share ideas and perspectives.
With Claire Ryan – Portfolio Manager – Commissioning, Design and Delivery – Whaikaha – Ministry of Disabled People
Theme: Creating a vision – With Me Not For Me – practical supports
Audience: Parents, whānau, and professionals
Whānau working with Health Care providers to achieve Best Outcomes
19th October
7pm
With Dr Rosemary Marks – Developmental Paediatrician
Theme: Health
Audience: Parents, professionals and whānau
Cocktail hour
21st October
7pm
Join us for informal evening as we wrap up the Virtual Conference and connect with each other.
Audience: All Welcome
