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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.
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.
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 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.
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.
There’s a huge gap at Hirepool in Lower Hutt where Colin Bailey used to work. He’s retired from the Hutt Road branch after more than 30 years on the job.
Colin’s farewell barbeque was an emotional day for everyone as Hirepool staff from across Wellington, along with Regional Manager Stuart Drew from Hawke’s Bay, came to say goodbye.
“He does leave a gap here – 100 percent,” Stuart says. “He swept the yard, kept it clean. No-one did it as well as he did. His work here was exceptional. He brought an excellent work ethic, a great sense of humour, a cheekiness.”
Stuart says he’ll miss Colin sneaking up on him and giving him a punch in the ribs. “It wasn’t just work; we were part of his extended family.”
He says employing Colin had been a success and Colin had worked to make it a success. “Years ago, someone came up with a great idea and he has stayed with us all that time. Colin still had to earn his way, which he did.”
Colin at his workstation. Photo: IHC
Wellington Area Manager Rod Groombridge worked with Colin for only seven or eight years but has known him far longer through Special Olympics New Zealand. Colin was a champion swimmer and Rod’s mother, Carol Groombridge, was the organisation’s first national secretary.
Rod says Colin was held in high regard by all the staff and treated as an equal. He says that was obvious in how many turned up to his farewell. A special sign reading ‘Colin’s Wash Room’ was hung over his work area.
“It was a funny old day. It was emotional really. We made that sign and we retired his broom.”
Colin had worked at Hirepool for longer than any of the team and through many of its former lives on the site – Projex, Hirequip and then Hirepool.
Hirequip used to hire out heavy equipment and when the trucks, diggers and huge road-sealing compactors came back clogged in mud Colin scoured their outsides with a water blaster and gave their cabs a dust-off ready for the next customer. He worked in all weather in gumboots, mask, leggings and a beanie to keep warm. In 2009 Hirequip presented him with a long-service award.
Hirequip’s successor, Hirepool, relocated the heavy machinery to another location and Colin switched gears. “I washed everything, the whole lot – washed all the gear, lawnmowers and rotary hoes.”
Colin started at Projex in 1985 or 1986, on work experience. He then took a year off to do the vocational life skills course at Petone Weltech before heading back to work.
Lee Bailey, Colin’s mother, says he got the job through IHC, working one day a week at the start. Before long “he was doing five days and he wanted to do six, but we put our foot down”.
This was a big commitment for Lee. “I would get up at 5.30am to get him to work. He went at 7am and was picked up at 2pm,” she says.
Last year, however, things changed. Although Colin’s job was waiting for him after lockdown, he was 59 and becoming increasingly tired. “Yeah, I would go home and sleep,” Colin says. As well, his father Ken died in September and Colin and Lee were having to adjust to the changes.
Lee, now 80, says she is glad to give up the early start. And Colin enjoys helping Lee around the house and mowing the lawns. He usually visits his old workmates once a week.
Source: IHC
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.”
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.
By John Pike
Where do you work?
Right here at Slaughterhaus – the graphic design company where CHAT 21 is produced.
John on cleaning duties at Lighthouse Brewery
How long have you worked here?
11 months.
How many hours each week?
6 hours.
What jobs do you do at your work?
I do the cleaning in the design studio and in Lighthouse Brewery next door.
John with his boss Dan and colleague Taylor.
How does it make you feel that you have a job?
It makes me feel good.
What do you like the most about your work?
Having a beer at Lighthouse Brewery after work on Friday and getting paid.
What don’t you really like about your work?
Cleaning the floor.
Do you have any other paid or volunteer jobs as well?
I help in the garden at Hohepa.
What would be your dream job?
Beer taster.
By David Skipworth
Not many people would get away with interrupting Warriors coach Stephen Kearney while he’s delivering a team talk.
Fewer still would dare to continue to speak over the top of the notoriously stern former Kiwis back rower and World Cup winning coach.
But Mark Dekker – or ‘Mark Carter’ as he prefers to be known – is the exception to the rule, and the one person guaranteed to turn Kearney’s frown upside down.
The 31-year-old with down syndrome began working with the Warriors football staff earlier this season and has been welcomed into the club’s inner sanctum in his role as the team’s official water runner.
The longtime Warriors supporter enjoys exclusive access to the players and is regularly included in their team huddles, joining in their breathing exercises and sharing a few motivational words in the lead-up to game day.
He picks and chooses his moments to speak and feels comfortable enough to interject – even if Kearney is delivering a fierce verbal spray to his players.
“We might be getting a growling and Mark will just walk into the huddle and stand under Mooks’ arm or start talking over someone,” explained front-rower James Gavet.
“Everyone will be grinning and you glance over at Mooks and even he’ll give us a look that says, ‘I really want to be angry but I can’t right now’.
“It’s usually all business and there’s not a lot of time to joke around, but Mark brings out a different side and can lighten the mood.”
Mark Dekker in his role with the Warriors. Photo / Greg Bowker
Dekker’s connection with the Warriors began earlier this year when Kiwi Ferns playmaker and club community relations coordinator, Georgia Hale, offered him the opportunity to get involved.
Twice a week, rain, hail or shine, Carter and his caregiver, Leighton Swann, can be found at Mt Smart Stadium, helping Warriors team manager Laurie Hale prepare water bottles and equipment at training.
The club issued Dekker with his own timesheet that he fills out after each shift and his contribution to the club gives him enjoyment and adds some structure to his week.
“He comes into most sessions so he’s got a bit of a presence amongst the group and staff,” said Kearney.
“He helps fill the water bottles and the boys have embraced him. He does a pretty good job.”
Prior to the Warriors’ round three win over Canberra, Dekker was invited to share a few words in the team huddle, when he borrowed a line from Kiwi social media star William Waiirua: “Do the mahi, get the treats.”
“The boys were all buzzing and came and told us what he’d said,” explained Swann.
“Stephen came over afterwards and gave Mark a big hug and said ‘I think we’ll stick with that saying for the season’.
“Everyone at the club has taken to Mark and shown him a lot of love. I’ve got a lot of time for the Hale family, they’ve got big hearts and Lozza needs to be commended for what he does with Mark.
“It’s so awesome to see the genuine care and love they have for him and whanau environment they have created.”
While most Warriors fans would nominate club icons such as Stacey Jones, Manu Vatuvei, or star halfback Shaun Johnson as their favourite player, Dekker is taken by Mark Carter – the former All Black who switched codes to play just eight games for the club back in 1996.
“That’s the name that he associates with and Carter’s Warriors number was 31,” explained Swann.
“Every time he goes into the sheds he shows the boys number 31 and the name Mark Carter.
“It might not be the most popular choice but its Mark’s choice and he likes the name as well.”
Dekker is particularly close with Gavet, along with wing Charnze Nicoll-Klokstad and ISP centre Junior Pauga, but has won the entire club over through his infectious sense of humour, positivity and work ethic.
Mark Dekker greets Warriors forward James Gavet. Photo / Greg Bowker
“They’re a good team,” said Dekker. “Rugby league is a great game and they are my good mates. It’s awesome.
“We work hard but when you do the mahi, you get the treats.”
Warriors captain Roger Tuivasa-Sheck says Dekker’s presence helps keep the players grounded and serves as a reminder of how the club can help people out in the community.
“It just puts things in perspective having him here,” said Tuivasa-Sheck.
“He’s a big supporter of the club and no matter what happens or goes on he always turns up with a smile on his face which keeps the boys happy.”
Mark Dekker in his role with the Warriors. Photo / Greg Bowker
Copyright: New Zealand Herald.
Down Right
Roseanne develops own photography business
By Dave Nicholl
An Invercargill woman has turned her passion for photography into a business.
Roseanne Zyskowski, who has Down syndrome, has put 101 photos of her favourite places throughout Invercargill into a calendar.
Zyskowski, who has been a photographer for a year now, has taken pictures of the Reading Cinemas, Queens Park, Thompsons bush as well as her own backyard.
The most difficult part of the project was getting motivated on some days but with the help of family, friends and support workers she got it finished, Zyskowski said.
Her mother Clare developed the idea after attending a social enterprise workshop held in Invercargill in November.
The initiative was run by the Ākina Foundation with the support of the Community Trust of Southland, Venture Southland and the Southland Regional Development Strategy group.
The idea was to give Roseanne a way in which she could use her passion for photography to support herself.
“When people hear the word ’syndrome’ the story they have in their head might be quite different to the way a lot of young people with Down syndrome are growing up and developing.”
The vision she developed at the workshop was to change the story around people living with down syndrome and give them the opportunity to stand on their own feet.
Included on the back of the calendar was a quote “No disability, only people,” that was designed to encourage others that those living with disabilities are just normal people in the community.
The hope was that by showing Roseanne how she could develop her passion for photography, she could turn it in to a microbusiness.
“She can actually take her photography and do something with it.”
If the business did not succeed it would still be a valuable learning opportunity for Roseanne, Clare said.
Each photo had a story or a person behind it, Roseanne said.
She is selling the calendars for $22
Kavinda Herath/Stuff
Copyright: Southland Times