National Executive Officer Zandra Vaccarino is frequently asked what the NZDSA does. To provide some more clarity she will share in each 2021 edition of CHAT 21, some of the things that the NZDSA does.

The NZDSA work programme is driven by our mission to work alongside families, whānau and carers to support and empower people with Down syndrome to realise their potential and aspirations through all life stages and within all communities.

The NZDSA’s mission means that the scope of our work is broad, but the guiding principle is to provide support, information and advocacy at a national level.

Our members might be familiar with our 0800 number, our website, CHAT 21, E-news or our social media platform but be less aware of the work that we do at a national systemic advocacy level. National systemic advocacy work might not always be visible, it can be time-consuming and achieving outcomes can be slow, but it is extremely valuable as it is the means to influence changes in policy and processes so that all people with Down syndrome can benefit and enjoy more equitable access to the same rights as all New Zealanders.

Some of the NZDSA’s national systemic advocacy work includes attending national stakeholder meetings to ensure that people with Down syndrome and their family and whānau are represented.

We collaborate with other organisations so that we can keep our members informed of current issues, collaborating to promote inclusive practices and working on submissions so that people with Down syndrome and their family and whānau are considered in decision-making.

Recent examples of the NZDSA’s national systemic advocacy include

  • The NZDSA collaborating with People First and the Donald Beasley Institute to prepare a submission on the Court-appointed Communication Assistance Quality Framework – consultation
  • The NZDSA attending the Abuse in Care Royal Commission of Inquiry which I have reported on below.
  • The ongoing advocacy work we are doing in the COVID-19 space which I have also shared below.

A key aspect of national systemic advocacy work is to engage with our members to find out how they feel about a particular issue, but often the turnaround time for consultation and feedback is very short and the only means to share and gain information is via E-news.

Unfortunately, not everyone reading CHAT 21 has shared their email address with the NZDSA so we cannot share important information with you or gain your thoughts on issues.

The best way of updating your information is to check your membership details via our website.

We also encourage you to share with all your friends that joining the NZDSA is free and very easy – all you need to do is complete the registration form on our website.

The more people we have on the database the more people we can consult with to ensure that we represent your voice when we engage in systemic advocacy.

Please share your thoughts regarding an independent review into primary school staffing which NZEI Te Riu Roa has commissioned. Submissions are open until the 12th April and we will be asking our members via E-news to share their thoughts with us on this topic.

Incoming and departing NZDSA staff discuss the work in progress to support the New Zealand Down Syndrome community.

COVID-19

It is just over a year ago that New Zealand moved to Alert Level 4, and the entire nation went into self-isolation.

Since our first lockdown we have adapted to living and working in different alert levels and whilst we hoped to be free of the tyranny of the virus we still find ourselves bouncing between alert levels and needing to find ways of moving forward in these turbulent times.

The NZDSA has kept monitoring the impact of COVID-19 on people with Down syndrome to ensure that we can advocate effectively for our membership. The research is indicating extremely disturbing health outcomes for people with Down syndrome and learning disabilities, so the NZDSA decided to take a cautionary approach to face-to-face events and we will only host events when all of New Zealand is at level 1.

Unfortunately, this meant that once again we could not meet to celebrate our favourite event, World Down Syndrome Day. We wanted to celebrate by aligning with the 2021 WDSD theme “Connect” so we decided to go virtual with the Big Connect.

The Big Connect was a great way to connect and celebrate with everyone in New Zealand and perhaps it is something we should do more often.

The NZDSA has written to the Hon Chris Hipkins, Minister for COVID-19 Response, and the Ministry of Health to advocate for people with Down syndrome to be on the priority list for the vaccine.

We are also aware that all our members will want to have more information about the COVID-19 vaccine so that they can make an informed decision. We will collate relevant information and share this with you via E-news and social media.

At the Waitangi Day Celebrations at Government House I had the opportunity to have informal conversations with Dr Siouxsie Wiles and Dr Caroline McElnay to thank them for all the work they are doing in the COVID environment and to remind them that learning disabled people and particularly people with Down syndrome, should be identified as a priority group for the vaccine.

We were also pleased to report that our application to the Lottery COVID-19 Community Wellbeing Fund was successful.

We didn’t receive all the funding we required but the funding we received will contribute to the costs of developing a wellbeing resource for our community.

Abuse in Care Royal Commission of Inquiry

The NZDSA recently attended a hui with other leaders from the disability sector to share our views on how the Royal Commission of Inquiry into Abuse in Care can engage with people with learning disability, neurodiversity and cognitive impairment to share their experiences of abuse and neglect with the Royal Commission.

A couple of key issues that emerged in the hui is that while the scope of the Royal Commission is on children, young people and vulnerable adults in State and faith-based care in Aotearoa New Zealand between the years 1950-1999, the Commission also wants to hear about survivor experiences before and after these dates.

The other key issue is that neglect is included in the scope of the inquiry. Many people in our community will be able to identify with neglect which is defined as failing to meet needs. The scope of the needs includes physical, emotional, medical, educational, spiritual, and cultural.

I am aware that members report incidences of the needs of their child not being met, particularly in health and educational settings. I would encourage you to attend hui in your community to find out more about the inquiry.

The NZDSA will use E-news and social media to keep you informed about how you can contribute to the enquiry.

The information gleaned will inform the Royal Commission to make recommendations in 2023 to the Governor-General on how New Zealand can better care for children, young people and vulnerable adults.

40 years NZDSA

The NZDSA National Committee met in Christchurch on the 27th and the 28th February 2021 to plan for the year and to progress our work programme.

The committee meeting was also an opportunity for the regional zone representatives on the national committee, the staff and a STRIVE representative to meet with the Christchurch Down Syndrome community to celebrate the NZDSA’s 40th anniversary and to share the work of the NZDSA.

The NZDSA hopes to meet with other communities in the country during 2021 to celebrate this milestone anniversary.

It would be valuable to capture the history of the NZDSA in a special feature in our annual report so please send me photographs and special memories to include in the feature.

My email is [email protected]

Linda te Kaat and STRIVE member Andrew Oswin cutting the cake to celebrate 40 years NZDSA in Christchurch recently.

 

Farewell to an NZDSA treasure

The NZDSA committee meeting in Christchurch also included a farewell for Linda te Kaat, the NZDSA National Administrator.

Linda has worked for the NZDSA for over 17 years and has had a critical role in professionalising the organisation, accessing funding for our many projects, supporting the national committee and an even greater support to all our members.

A person who acknowledged Linda said she is a fountain of wisdom. Linda is also a dedicated advocate for people with Down syndrome and is committed to empowering people with Down syndrome and their family and whānau.

She is always making those around her laugh and she goes the extra mile to ensure that the NZDSA is able to deliver ongoing support, information and advocacy.

It is difficult to capture the significant contributions that Linda has made to the NZDSA and the wider Down syndrome community. I am sure you will join me in thanking Linda for everything and to wish her the best for the next chapter of her life.

Attitude Pictures is currently casting Down For Love, a primetime television series for TVNZ 2.

Down for Love will focus on people living with Down Syndrome who are on a quest for romance.

With a sensitive and dignified approach, this show is a documentary series that will highlight the strength and diversity of the Down Syndrome community.

Attitude Pictures is a disability-led organisation with a strong history of providing respected and respectful disability content.

If you live with Down Syndrome and you are looking for the love of your life, wanting to explore local dating options or learn the tools to woo your future partner – we would love to hear from you!

Email [email protected] if you are interested.

www.attitudelive.com

Innocence is an award-wining short film, starring actors with Down syndrome, Tommy Jessop (BAFTA Nominated Coming Down The Mountain) and Bethany Asher (Wild Bill), which was released this week for World Down Syndrome Day.

Jessop and Asher play alongside Alice Lowe (EMMY Award-winning Black Mirror), Laurence Spellman (Ready Player One), Richard Glover (Rogue One), Bethany Asher (Wild Bill) and Faraz Ayub (Bodyguard).

Innocent is a film presented by Portsmouth Down Syndrome Association, is a fast-paced crime drama created by the BAFTA-nominated writer-director Ben Reid which is inspired by his brother Tom, who has Down syndrome.

This topical film, which shines a light for a more nuanced representation of disability on screen, has won high profile film awards including the Best Short Film at the London Lift-Off Film Festival, the Don Quixote award at the OSCAR qualifying 60th Kraków Film Festival and it was long-listed for a 2020 BAFTA.

 

Around 100 families on Saturday joined the BIG CONNECT, which may be New Zealand’s largest zoom call, to celebrate World Down Syndrome Day.

The global theme for World Down Syndrome Day asked people to connect in response to the Covid restrictions which have impacted the disabled community particularly hard.

“In response, the New Zealand Down Syndrome Association (NZDSA) decided to invite families from around the country to connect on zoom, which has become such a big part of life in the past year,” says Zandra Vaccarino, the National Executive Officer of the NZDSA.

The response from the community around the country to join the party has been overwhelming and the event was made even more special by the Minister for Disability Issues, Carmel Sepuloni addressing the families.

“We were honoured by the Minister taking the time on a Saturday night to talk to our community who appreciated her recognising that people with Down syndrome are an integral part of our society and achieve incredible successes each day,” says Vaccarino.

Minister Sepuloni was the first of several high-profile guests to appear on The Big Connect, along with Paula Tesoriero, the Disability Rights Commissioner, and Vanessa dos Santos, President of Down Syndrome International.

Tesoriero pointed out that the challenges of the past year had created new ideas and that nobody would have thought about a mass zoom call 12 months ago.

Dos Santos spoke through a video message from her home in South Africa and said New Zealand was the envy of the world, as Kiwis are able to celebrate World Down Syndrome Day this Sunday with other families, while many other countries are still in lockdown.

The NZDSA patron Governor General Dame Patsy Reddy sent a message congratulating the association on its 40th anniversary of providing information, support and advocacy that “has enabled people with Down syndrome to exercise their inherent rights as citizens and feel empowered to participate as active members of their communities”.

Regional groups have organised special events around the country to raise awareness and celebrate the achievements of people with Down syndrome.

The Wellington community on Saturday got together for a big disco, the Canterbury families organised a cruise and a picnic in Lyttleton Harbour, while Otago families will go horse-riding, the Taranaki and Northland community both organised walks in their areas, and the NZDSA is hosting a Rock your Socks event in Palmerston North

With the recent Covid uncertainties, the Auckland Down Syndrome Association decided to cancel its traditional Buddy Walk and instead will create virtual events where families are encouraged to get together in smaller groups and share videos and photos of their private parties.

“It was wonderful for all our families to get together in such a way, especially after we had to cancel all events a year ago,” says Vaccarino.

The New Zealand Down Syndrome Association (NZDSA) is applauding the Government’s decision that will allow people with Down syndrome to get access to their Kiwisaver before 65 years.

Minister of Commerce and Consumer Affairs, David Clark yesterday announced the variety of conditions under the new KiwiSaver withdrawal category, which also includes cerebral palsy, Huntington’s disease and fetal alcohol spectrum disorder.

NZDSA President Kim Porthouse says that this decision is a victory for the rights of the disabled. This common-sense decision  gives working people with Down syndrome the opportunity to enjoy their hard-earned Kiwisaver when they are still fit to do so.

“Whilst the life expectancy of an average person with Down syndrome is increasing each year, it is currently between 50 and 60 years meaning many  are not able to wait until 65 to start their retirement, so this decision allows people with life-shortening conditions to enjoy their Kiwisaver when they are ready.”

Mrs Porthouse says the New Zealand disability sector owes a huge deal of gratitude to Tim Fairhall and his mother Joan who convinced Parliament to introduce Kiwisaver exemptions for people with certain conditions.

“Tim is an inspiration to everyone in the Down syndrome and wider disability community for his vision and bravery and I can hardly express how proud and thankful we all are for Tim and Joan for bringing this injustice to the attention of the Government,” says Mrs Porthouse.

Tim confronted the Select Committee in 2019, with the support of IHC and Dr Claire Matthews from Massey’s Business School to argue how the old withdrawal rules disadvantaged people like him.

Mrs Porthouse says that the Kiwisaver decision is a significant step towards equality for people with disabilities  to enjoy the same quality and benefits of life as other New Zealanders.

“While we celebrate today, there are still plenty of other issues we need to address to remove the barriers that stop people with disabilities enjoying a full and good life,” says Mrs Porthouse.

“As long as people like Tim and others in our community keep challenging these barriers, we can create a community that is truly inclusive.”

For more information please contact NZDSA Communications Advisor Coen Lammers on 021-730239

By Rebekah Williamson

PHAB is a little organisation with a big impact.

PHAB primarily provides social groups for people of all abilities, across Auckland. We are always looking for new ways to engage with our community.

We have been doing a Girls Day Out annually, but after talking to many families we came to realise that the day-to-day routines for our mothers and daughters often revolved around care, and we wanted to provide a day that was uniquely about their relationship: bonding, learning and being together.

 

The recent Mothers and Daughters Day started with a cooked breakfast at the PHAB building, all the families came together and before long we were in taxis and off to our main activity for the day: Aerial circus for the day at the Dust Palace.

Kathleen Derrick. Photos: Natasha H’ng

We chose the Dust Palace in particular because of the large and varied range of costumes that they had, as we wanted everyone to walk away with photographic memories from the day.

Dust Palace was amazingly professional, and provided just the right amount of support, exceptional safety and empowerment to allow the participants on the day to grow in confidence as they explored the apparatus.

After lunch everyone dressed in costumes and got their time in the limelight for their photoshoots with their photographer Natasha H’ng.

Deborah and Faith Van Heeswyck

The afternoon was finished off at Kiwi Nails and Spa in Takapuna and cake and drinks.

We were lucky to have support from the Louisa and Patrick Emmett Murphy foundation, who saw the value in providing this special day and supported us to do so.

We are grateful to everyone who made this day happen. We are especially grateful to the Mothers and Daughters who were simply inspirational.

Eight young adults with learning disabilities recently graduated from Project Search, an innovative programme by the Canterbury DHB that gives youngsters the opportunity to learn new skills and get work experience.
A very proud Logan Moloney was one of the 2020 graduates who had to endure a rollercoaster ride due to COVID-19 lockdown.

The Project Search class of 2020.

Logan’s mother Di says she was incredibly grateful to programme lead Linda Leishmann and her team for keeping them connected, “which must have been very challenging with the uncertainty and pressure they were under at Burwood Hospital”, says Di Moloney.
Project Search was launched in 2019 to follow the example of a similar successful programme in the United States.

Logan Moloney on duty in the kitchen.

Designed to break down barriers to employment for young people with disabilities, the programme sees each intern work across three 10-week placements in areas including IT, administration, kitchen and food services, orderly services, in the physiotherapy, spinal and older persons mental health departments, or in maintenance and stores.
Logan Moloney says he loved coming to the hospital every day.
“I enjoy the classroom time and working with the other Interns and I have made lots of friends,” says Logan who completed placements in the hospital kitchen and more recently in the physiotherapy department.
“In the kitchen I cleaned the big dishwasher, heated plates and helped with meals for patients. I put the stores away in store rooms and kept the areas tidy.”

Logan helping Karen in the physiotherapy department.

“In Physiotherapy I worked with Karen. I am happy because I am helping people.”
“I work in the Gym and the swimming pool area. I set up the Knee class and go to the Spinal Gym to help people. I have my office to do admin and my own in-tray for my work that I do. I love working in Physio,” says Logan.
Di Moloney says she first found out about Project Search when visiting a friend in hospital and running into Hayley Butler who was part of the inaugural class of 2019.
“Hayley was in the department delivering the clean laundry. Hayley has Down syndrome and I was impressed with her confident manner and the way she spoke to us all and explained what her duties were and she told us about Project Search.”
Di says Project Search was a perfect way to transition from secondary school into a working environment.
“And you have to applaud the CDHB for taking this programme on.”
Di adds that Project Search has very high expectations of the Interns who in turn are expected to perform to the best of their ability.
“The interns have to be reliable, punctual, independent, develop appropriate social skills and have to travel to work independently. Logan is up at 6am every day, so he can be on the bus by 7am and returns at the end of the day by 5.30pm so it is a very long day.”

“Logan has grown so much in confidence this year and really enjoys going to work every day. I cannot speak highly enough of the programme.”
Canterbury DHB Chief People Officer Michael Frampton said the programme is an important initiative that’s part of Canterbury DHB’s efforts to ensure our workplaces are inclusive and that we celebrate diversity.
“Canterbury DHB is committed to creating a workforce that understands and reflects the communities we care for. Of more than 200,000 Kiwis with disabilities who are unemployed – three quarters of them want to be working, but can’t get jobs. Project SEARCH has enabled us to be part of the change we want to see.
“We’ve been able to equip our interns with real, meaningful work experience and they’ve repaid us in spades by nailing their jobs. The grit, determination and work ethic they’ve shown this year has been inspiring for everyone in our organisation.”
Canterbury DHB Project SEARCH is a collaboration between the IHC Foundation, CCS Disability Action, Low Vision and Blind NZ, Riccarton High School and WorkBridge.

Each edition, CHAT 21 focuses on one region and this time JO MORRISON from the Northland Down Syndrome Support Group tells us about what’s happening in the Far North. 

Since its inception in the 1990s, Northland Down Syndrome Support Group’s kaupapa has been able to fill the gaps and meet the needs of people with Down syndrome and their whānau across Tai Tokerau/Northland.   

Started by parents who wanted to connect themselves and their families with others in similar situations, the group has grown over the decades. Those original children are now in their late twenties and thirties; they and their families are now experienced guides for the new whānau who join our community each year. 

After many years as a charity, Northland Down Syndrome Support Group became a charitable trust in 2017.  Its Board of Trustees currently comprises four mums who organise and run all events and activities as unpaid volunteers.   

Our Chairperson and NZDSA Committee Representative is Bev Smith. She is part of the community nursing service and mum to Erin who has Down syndrome who is in her 30s, works for Northland DHB and is a member of STRIVE.   

Our Secretary and Coordinator is Kathryn Sadgrove. She has a background in transition and advocacyand a strong voice on consumer panels for Northland DHB.  Her son, Thomas, has Down syndrome and is in his late 20s and loves to go fishing.  

Social group GreatM8s celebrating St Patricks Day in Northland.

Jo Morrison is Treasurer and Education Adviser.  She has a background as a secondary school teacher and senior leader and recently completed a Master of Education exploring how children with Down syndrome are being supported in a small number of mainstream Northland schools.  Her daughter, Lucy, has Down syndromeis seven years old and attends her local primary school.   

Fiona Rowse is our fourth trustee.  She also has a background as a secondary school teacher and is currently a guidance counsellor.  Her daughter, Freedom, has Down syndrome.  Now in her 30s, Freedom lives independently and contributes her voice to youth councils in the Whangārei area.   

We also have three Officers of the Trust: Erin and Freedom, plus Karen Tucker who has served on the committee since its inception, holding the role of Treasurer for over a decade.  She is mum to Daniel, now in his twenties, who loves to sing and has his own very definite sense of style (as those of you who know him can attest!) 

  

Arlo at Flipout.

To fill the gaps and meet the needs, Northland Down Syndrome Support Group provides regular activities and events to support the growth of our community and the building of a sense of belonging within its members. 

From the birth (or even at pre-birth diagnosis) of a new baby with Down syndrome, Kathryn is available to welcome, support and offer a listening ear and reassurance to families.  When they are ready, she connects them up with other parents/carers of babies or young children with Down syndrome in their area to facilitate mutual support.   

We run two monthly activities that children with Down syndrome, their siblings and whānau can attend.  On the first Sunday of each month, we spend an hour together at FlipOut Whangārei.   

Lucy and big sister Eva at WAG.

On the third Sunday of each month, we go to Whangārei Academy of Gymnastics for an hour of gym fun followed by a shared kai.  Both of these activities are free of charge and we are incredibly grateful for the supports and discounted rates we receive from these two venues. 

Adolescents and adults can also attend the FlipOut sessions and also have their own social club, GreatM8s.  This is a group for people with Down syndrome and other intellectual disabilities and has been going for many years.   

They have their own Facebook group and meet fortnightly for crafts, movies, ten pin bowling and meals out.  Sometimes they have visiting speakers; recently they met with Emily Henderson, Whangārei’s new MP! 

GreatM8s meet local MP Emily Henderson.

We also support our children and young people with Down syndrome at school by providing professional development workshops at the beginning of each year to teaching staff across the region.   

Working in close partnership with local Ministry of Education Learning Support teams, we have trained over a hundred teachers, teacher aides, and SENCOs in Kaitaia, Kaikohe, and Whangārei over the last three years. 

The population of Tai Tokerau/Northland is widespread, making it a real challenge for our families from further afield to meet up.   

With this in mind, we have a very active Facebook group that keeps us all connected and we run two annual events that encourage our Down syndrome community of all ages to get together.  These are the Christmas Party and the Hātea Loop Walk in Whangārei for World Down Syndrome Day.  

Karen and Daniel Tucker at the Hatea Loop Walk during WDSD 2019.

For the last two years, the Christmas Party has been held at Tikipunga High School Hall, with a barbecue lunch provided by Rapid Relief Team, and entertainment and hands-on activities provided by Circus Kumerani.  Santa visits too!   

So, we all leave at the end with a gift for the children, a nice full tummy, and a big smile.  

The Hātea Loop Walk to celebrate WDSD was first held in 2019 and attended by over 230 people.  A number of local businesses supported us by providing refreshments and prizes.   

Sadly, due to lockdown, the 2020 walk was cancelled.  Instead, we took WDSD2020 online and shared photos of ourselves dressed up on our Facebook group page and raised money through an online auction. We’re hoping to be back walking the Loop again to celebrate WDSD2021!  

We couldn’t do any of this work without our small team of hardworking volunteers, the funding provided by COGS and Lottery Communities, and all the local businesses who support our activities and events.  

Thank you, all of you!! 

Auckland airport was filled last week with mixed emotions when  14 young adults and their parents prepared to board their flights back to all corners of the country after completing the annual NZDSA Youth Camp.

The participants and their supporters were still buzzing from their amazing experiences during the three-day camp in Long Bay, north of Auckland, but also shed a tear as they had to say farewell to all the new friends they had made.

The annual weekend is one of the highlights on the NZDSA calendar where young adults from all regions in the country are nominated by their local groups to be invited to this fully funded camp of fun, action, laughter and great food.

The change in the mood of the group and the interactions between the young people and their carers between arrival and departure was incredible to witness.

When the group first gathered on the Friday, most participants were understandably shy and nervous of what they could expect.

Some had never been on a plane, and some had never spent night away from their parents, as the young people each got their own room at the beautiful Vaughn Park, looking out over Long Bay beach.

The parents stayed nearby in another house on the same property, but for some participants even that small separation was a big step in growing their independence.

After the first introductions and getting familiar with their new surroundings the young adults were driven to Xtreme Entertainment where they proved to be extremely competitive in their ten-pin bowling and barely had time to eat the pizza on offer.

The Saturdays are traditionally action-packed at the Sir Peter Black Maritime Education and Recreation Centre (MERC) where the wonderful instructors gently guided the young people through the first steps of rock climbing and abseiling.

Some of the young people were clearly not impressed by what was lying ahead but all showed incredibly courage as every participant conquered their fear of heights and abseiled the intimidating wall.

The rock climbing proved to be a bit more challenging but again all participants gave it a real go and many of them managed to reach the top of the wall.

All that activity had created a real hunger, but the Rapid Response Team were there to the rescue and feed the crew a much appreciated lunch of burgers and chips.

In the afternoon, the MERC instructors brought out the archery gear and the participants showed a real knack of hitting the target. For many of them it was the first time they had handled a bow, and they all enjoyed learning this exciting new skill.

After a well-deserved rest, the youngsters dressed up for a beautiful dinner prepared by the Vaughn Park staff,  but any extra kilos were quickly worked off when the dining room was turned into a dance floor. The crew particularly enjoyed songs from Mamma Mia and Grease, but all showed their unique dancing styles with a variety of music.

A slightly jaded group arrived at breakfast on Sunday, before heading into an art session to reflect on the weekend and about the new things they had learned.

Several of the parents also commented about their own personal development and how impressed they were with their children trying new things and showing more independence than they had expected.

Most caretakers vowed to use the new lessons to let their children become more independent.

The weekend created some wonderful new friendships and many exchanged details to stay in touch.

The NZDSA Youth Camp is a unique opportunity to learn, for parents and their offspring, and build new networks.

If you are interested in attending at the next camp in late 2021, contact your local NZDSA representative and put your name forward.