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.

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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.

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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

 

‘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.

The New Zealand Down Syndrome Association is extremely proud of Michael Holdsworth becoming a member of the New Zealand Order of Merit in this week’s Queen’s Birthday Honours.
The NZDSA believes Michael is the first person with Down syndrome in New Zealand to receive this kind of honour.
Michael was recognised for his decades of work for Special Olympics and his advocacy work for full inclusion of people with Down syndrome in their community in New Zealand.
NZDSA President Kim Porthouse says that Michael has been a trailblazer for people with Down syndrome, both during his education in mainstream schools and his employment with IHC.
“Michael has been a great role model and has helped to remove a lot of barriers for people with Down syndrome,” says Ms Porthouse,
“Aside from that, he is also an accomplished musician and his piano performances have been a regular feature during the NZDSA National Achievement Awards at Government House,” says Ms Porthouse, adding that Michael himself was a recipient of the National Achievement Award in 2012.


“Every person with Down syndrome and their families in New Zealand will be extremely proud of Michael’s achievements and it is wonderful to see this recognised in the Queen’s Birthday honours.”
Michael represented New Zealand at the World Down Syndrome Conference in Dublin, Ireland, in 2009 to share his story of advocacy and inclusion.
He has been involved with Special Olympics for 32 years, as an athlete, advocate and as a Global Ambassador, and has been working for IHC in the library for almost 27 years, being the helpful voice at the end of line for people looking for resources.
The Special Olympics swimmer and skier says he is very honoured.
“With all the years of Special Olympics it has been the best thing of my sport,” he says.
The NZDSA President says that Michael is yet another example of the amazing things people with Down syndrome can achieve.
“More and more people and organisations are starting to realise what people with Down syndrome are capable off and what a great asset they are to their community.
“Michael has been one of the trailblazers and we are excited to see so many other young people following his footsteps.”

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The New Zealand Down Syndrome Association has launched a wonderful new resource to fill a “huge void” for health professionals when dealing with new parents of a child with Down syndrome.

“We have received overwhelming feedback from parents and whānau that the health professionals they deal with in those whirlwind first days, often do not have the information they need, so we hope that this will help both parties fill this huge void,” says Zandra Vaccarino, the NZSDA’s National Executive Officer.

Vaccarino says that new parents deal with a variety of health professionals, from their midwife, early intervention team and paediatrician to the Plunket nurse and GPs.

“Often these professionals seem to think that one of the other will have given given parents and whanāu specific information on Down syndrome, but often the parents fall in a big information-free abyss,” says Vaccarino.

The National Executive says that the Down syndrome diagnosis is a surprise for many parents so they have lots of questions and need to learn more about Down syndrome as well as navigate where and how to access  support.

“Parents are looking for answers and support, but often the first conversations are unnecessarily stressful and very upsetting, when the health professionals have no information – or worse – provide misinformation,” says Vaccarino.

The new brochure, Tips For Health Professionals, provides professionals with resources, key contacts and useful tips on how to approach these vulnerable parents in a respectful and sensitive manner.

“In many cases, doctors, nurses or other support workers will have limited knowledge of Down syndrome and may not be aware of the amazing resources and support organisations available to the parents.”

A large section of the brochure covers the language professionals are suggested to use and what phrases to avoid, as they may be considered offensive or archaic.

The brochure also includes a milestone map specifically for children with Down syndrome.

“Usually parents are given a milestone list for typical children. Having a specific Down syndrome road map will provide parents with realistic expectations about their child’s development and hopefully avoid unnecessary concerns and frustration.”

Health professionals and anyone interested in people with Down syndrome can download Tips For Health Professionals, and other resources on the NZDSA website. The resources are free to download once you have registered your contact details.

 

 

Actor Duncan Armstrong stars in a series of new videos released by the Health and Disability Commissioner and the Nationwide Health and Disability Advocacy Service to help people with learning disabilities think about their own experiences with using disability services and their rights under the Code.

There are five videos, each with a different story. The videos look at how Sam, played by Duncan, and his friends use disability support services and how they resolve any concerns that they have.

The videos were produced by Film for Change Aotearoa and made locally in Wellington with Wellington actors, including people who use disability services.

Each video has a closed captions option, and the closed captions and slides have been transcribed into Word documents. Deaf Aotearoa has created New Zealand Sign Language (NZSL) for each video.

 

Down Syndrome International recently hosted a webinar to provide information and receive feedback about the first international guidelines for educating learners with Down syndrome.

If you missed the webinar but are interested in learning more, you can watch the webinar here.

Down Syndrome International (DSi) has developed these guidelines, using experts and existing research from around the world, to enable teachers to help their students with Down syndrome reach their full potential.

NZDSA National Executive Zandra Vaccarino thinks these guidelines are a game changer and will become an invaluable asset to New Zealand educators.

“We know that educators in New Zealand will welcome this resource as there is a great need for expert guidelines to  teach students with Down syndrome,” says Mrs Vaccarino.

“These new global guidelines have pulled together the best practices available around the world and will facilitate the realisation of the right of people with Down syndrome to an inclusive education and lifelong learning.”

New Zealander Bridget Snedden, Vice Chairperson of DSi says these guidelines have been developed to improve the availability and quality of education for people with Down syndrome around the world.

“We need to raise the expectations among educators of what young people with Down syndrome are capable of,” says Snedden who was closely involved in developing the guidelines.

To download the guidelines, please go to:

https://www.ds-int.org/Handlers/Download.ashx?IDMF=7a4a9546-287d-49c1-8573-888319d7310f 

NZDSA Media release

The New Zealand Down Syndrome Association (NZDSA) has welcomed the first international guidelines for educating learners with Down syndrome which were released last week. These guidelines are an important document that will inform the education needs, inclusion and life possibilities of learners with Down syndrome.

Down Syndrome International (DSi) has developed these guidelines, using experts and existing research from around the world, to enable teachers to help their students with Down syndrome reach their full potential.

NZDSA National Executive Zandra Vaccarino thinks these guidelines are a game changer and will become an invaluable asset to New Zealand educators.

“We know that educators in New Zealand will welcome this resource as there is a great need for expert guidelines to  teach students with Down syndrome,” says Mrs Vaccarino.

“These new global guidelines have pulled together the best practices available around the world and will facilitate the realisation of the right of people with Down syndrome to an inclusive education and lifelong learning.”

New Zealander Bridget Snedden, Vice Chairperson of DSi says these guidelines have been developed to improve the availability and quality of education for people with Down syndrome around the world.

“We need to raise the expectations among educators of what young people with Down syndrome are capable of,” says Snedden who was closely involved in developing the guidelines.

Snedden’s own son Alex is 32 now, “and I think if we had these guidelines when he was at school then it would have made his full inclusion a more positive experience for everyone and would have increased the expectations of teachers and supported his inclusion at school”.

Vaccarino says that  the need for international guidelines has been a hot topic at the international conferences the NZDSA has attended.

“I was fortunate to attend, along with other New Zealand parents and a host of representatives from all over the world, a vital session to discuss  issues with inclusive education and to find solutions.  The outcome was the need for a document that would provide guidelines that could be used worldwide,  so we celebrate this resource that DSI has published.”

According to Snedden, Down Syndrome International sees full inclusion of students with Down syndrome as the key to successful outcomes at school and in life.

“Even in 2020, too many New Zealand schools will direct students to learning support units, essentially segregating them from the peers in their community, without fully exploring opportunities to adapt the curriculum.

“There may be good reasons to do so, but too many students end up going through school without interacting with their non-disabled peers, not giving all children the opportunity to learn from each other and the skills they need when they finish school to participate in the wider community,” says Snedden.

“We hope these guidelines can facilitate greater independence and future employment.”

To download the guidelines, please go to:

https://www.ds-int.org/Handlers/Download.ashx?IDMF=7a4a9546-287d-49c1-8573-888319d7310f 

Media release from Associate Minister of Education Tracey Martin

Students with high and complex learning needs, as well as their teachers and parents, will benefit from a substantial increase to Ongoing Resourcing Scheme (ORS) funding, Associate Education Minister Martin announced today.

“Nearly $160 million will go towards helping these students by lifting their base support over the next four years, and by providing extra short-term support in response to the impact of COVID-19,” Minister Martin said.

Hon Tracey Martin

The baseline increase of $128 million over four years will support students who are ORS verified by increasing the average ongoing funded teacher aide hours per week from 10 to 13 for high needs students and 17 to 20 for very high needs students. This increase will take effect from the start of term three 2020.

The actual number of teacher aide hours allocated to individual students will be based on individual need. This will enable these students with complex needs to have ongoing support to increase attendance, participation, engagement and progression.

“In addition to this, an extra $31 million response fund will be available from now until June 2021 for schools to employ additional teacher aide support for those ORS students who need extra help on their return and transition back into school due to COVID-19,” Minister Martin said.

“After an extended period away from their learning routines due to lockdown, some students who are ORS verified may need additional teacher aide support to strengthen their attendance, participation, engagement in learning, and to reduce the stress and anxiety of transitioning back to school.

“For example, I am aware that some students’ transition visits have been delayed as a result of lockdown. The response fund will assist students in these types of situations.”

The response funding can only be used for teacher aide hours to the end of June 2021. It will enable schools to employ up to an additional 1,025 FTE teacher aides for one year.

To speed access to the fund schools will complete a simple application for their ORS verified students.

Over the more than 40 years of its existence, the Champion Centre has helped transition many children with Down syndrome into early childhood centres and schools. Some teachers have good knowledge about the needs of children; but others have questions and concerns about how best to support them in the learning environment. As a result of many conversations with teachers, the Champion Centre has developed a small booklet which it offers to early childhood centres and schools to help them understand how best to support children’s learning. Below is a sample section from this booklet to give a flavour of the information and advice being offered.

Supporting learning

Learning is rarely a straight path for any of us; but for children with Down syndrome it often seems to be particularly circuitous. Learning happens because new connections are being formed in the brain. And in the brains of children with Down syndrome forming these connections can take longer and can need more repetition and reinforcement to be maintained than in the brains of typically developing children. As a result, skills may appear and then apparently disappear, only to reappear later. Sometimes this is the result of periods of poor health or the transition to a new environment; but at other times, learning requires not just the ‘addition’ of new information but the ‘reorganisation’ of existing knowledge and this can temporarily or permanently dislodge things that have already been apparently learned. As each new skill or piece of information is learned, it is important that existing ones not be forgotten, but reinforced through activities that integrate the old and the new.

An ability to sequence and to process sequences (of words, of numbers, of activities and ideas) is at the core of learning, and children with Down syndrome find sequencing challenging. They process more slowly than typically developing children, and their challenges with memory mean they often forget earlier parts of the word, sentence, instruction, or idea by the time they reach the end. In other words, because auditory processing is poor, it does not support memory (with internal speech) the way it does for most typically developing children.

Here are some strategies that teachers and other learning support personnel can use to help children learn in the classroom:

  • Use visual schedules to help the child understand the routines of the classroom and the sequence of activities expected
  • When giving instructions or directions present them both orally and with a visual support (e.g., a picture or a written word) and make sure they are simple and step-by-step and that the child is watching, listening and attending. Be aware that children with Down syndrome may process only part of the instruction and appear to have done the opposite of what was intended (e.g., “don’t cut it” may be processed as “cut”). Alternatively, if they did not understand they may simply copy another child.
  • Help children understand the steps involved in a complex task and help them think about those steps, perhaps by saying “What do I need to do before….?” “What do I need to do next….?”, “What do I need to do after….?” In this way, they will begin to understand the structure of the task (beginning, middle, end).
  • Remember that children with Down syndrome are not as flexible in their thinking as other children and will have difficulty revising their approach to a task already learned. Where possible teach to the endpoint you want to achieve; breaking the task into manageable components.
  • Limit the distractions around the child while still keeping them as part of the classroom. Think about providing them with only the tools (pencils, ruler, etc.) that they need for the job at hand.
  • While Buddy systems are important for social connection, other young children will not understand the challenges of learning for children with Down syndrome, so limit peer teaching/learning expectations.
  • Be overt with the language of “learning to learn” is important. For example, when selecting a book it is important to talk about the concept of reading for meaning e.g. “Let’s find out what this book is about…” “What will happen next?” “What was this book about?”
  • Let them use a keyboard if they find this more effective than using a pen or pencil that requires more fine motor control that they are able to manage.
  • Make sure you know whether they are staying on task, perhaps by having them working near the teacher. Help them avoid paying attention to irrelevant details of the task.
  • Give them time to process; support them when they make mistakes; and help them achieve a sense of success and achievement.
  • Make sure they know that you care that they do their best. Give praise and encouragement and expect to repeat verbal prompts and reminders even if they have a visual prompt as well.
  • Connect with the child’s parents and make sure you have good communication so that the parents understand what the tasks of school are and can support the child to practice them at home.

Motivation for learning depends on interest and meaningfulness. Ensure tasks are meaningful and where possible, playful, so that children are engaged and motivated to participate.

The above is a section on Supporting Learning from a short booklet developed by The Champion Centre, for early childhood and primary school teachers entitled “Helping Children with Down Syndrome Reach Their Full Potential”.

The full booklet has sections on supporting language and communication, supporting learning, supporting behaviour, and supporting children as people.

A printed copy is available from the Champion Centre for $9.50, including postage, payable by cash or via direct deposit. Please contact [email protected] for more details.