CHAT 21 October 2021

CHAT 21

ISSUE 87, Spring 2021.

Journal About & For The New Zealand Down Syndrome Community

Celebrating 40 years of the NZDSA.

ISSN 2744-4635

Our People

Top left: Olivia Dale goes shopping Top right: Alex Mulholland with candleholder he made Centre left: Caleb aka Dr Pepper – He does a good bandage!

Centre right: Paige Goddard busy practising to stand, talk & sign!

Bottom left: Rory Stephen & his picture Bottom right: Luke Simons doing his zoom drum lessons

Celebrating 40 years of NZDSA Forty years after a handful of Auckland families decided to support each other to raise their children with Down syndrome, the main drivers for what is now a thriving national organisation have not changed that much.

New Zealand society in 2021 and the opportunities for people with Down syndrome to develop and excel are lightyears away from what was the reality back in 1981.

Inclusion and advocacy were new ideas that captured the visionary group of parents who decided to get organised and start fighting for their children to live a full life at the heart of their communities, not hidden away at home or in an institution.

Thanks to the tireless work of NZDSA committee members and their peers in other disability organisations, people with Down syndrome can now dream of going to school, getting a job, finding a partner, living independently, and doing all the things that makes life so exciting.

At the same time, many of our battles to open doors, raise awareness and fight

prejudice are not much different from what they were in 1981.

With the help of many visionary and passionate people, this edition of Chat 21 tries to recapture the key moments and personal reflections of those involved.

Much of this 40-year story is based on oral history and the memory of individuals, so they can be forgiven if the facts have become a bit hazy after so many decades.

So we ask for understanding if some of our readers recall some of the events slightly differently. Feel free to contact us, so we can correct our digital versions and make this historical record as accurate and valuable as possible.

I hope you enjoy reading some of these tales, and looking forward to seeing what our community will achieve over the next 40 years.

Congratulations to everyone involved in creating memorable 40 years for the New Zealand Down syndrome community.

Coen Lammers Editor@nzdsa.org.nz

Image: A recent photo of NZDSA committee members & staff (plus baby Bill)

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FORTY YEARS OF DOWN SYNDROME ADVOCACY For 40 years the New Zealand Down Syndrome Association has supported parents and advocated on their behalf and their children with Down syndrome to lead a full and meaningful life. CHAT 21 Editor Coen Lammers reflects on four decades of advocacy with some of the key people leading the charge.

Th e N ew Ze a l a n d D ow n Sy n d ro m e Association this year celebrates its 40th anniversary and is proudly looking back at the achievements by many, many volunteer parents, siblings and other supporters over four decades.

The desire among parents to be connected for support and advocate on behalf of the wider Down syndrome community eventually evolved into a well-respected national organisation and countless regional and other groups helping people with Down syndrome to lead full and meaningful lives.

The story of the NZDSA starts in Auckland where an unusually high number of babies with Down syndrome were born around 1980 and 1981.

“When our son was born 42 years ago, there was barely any support,” says Robin Borkin.

“You were discharged from hospital after

a few days and wished all the best. You were told you’d just have to wait and see how things turned out.

“This, at least was a change from the advice which preceded this time. Doctors had previously advised new parents not to take their new baby with Down syndrome home but to place it in a mental institution,” says Robin whose family played a vital role in establishing the Down Syndrome Association.

Early support for many of these families came when they were invited to join a newly evolving early intervention programme being offered in the community by a small team from Mangere Psychopaedic Hospital, since closed.

This early intervention programme, overseen by a paediatrician Dr Tonkins and run by an occupational therapist, Anne Hanna, addressed much of the initial physical development of the children.

This programme also created the first connection between a group of strangers who had one very strong common bond.

All of them were new parents embarking on an intimidating path of discovery around a congenital condition that would significantly affect many aspects of their familie’s lives going forward.

Encouraged by this, Anne Hanna and

Image: Auckland coffee group 1988

Robin and John Borkin agreed to host a playgroup at their home in Mt Eden, and this simple act of reaching out to others, proved to be a pinnacle moment in the history of the Down syndrome community in New Zealand.

“We are quite social and like to entertain people,” says John Borkin.

Soon the playgroups for the mothers evolved into other social activities for the whole families. “ Pe o p l e wo u l d co m e f ro m a l l ove r Auckland, so there was clearly a need for support among young parents.”

Sue Story, a social worker with IHC was also in touch with many of the families at that time and encouraged the playgroup.

She suggested that this group was providing something more than IHC could provide at that time.

It very quickly became apparent that most families, beside the trauma of coming to grips with having a child with Down syndrome, were devastated further over the way the doctors broke the news regarding the condition of their new baby.

“We realised that there was a lack of information for new parents and we needed to create something that we could hand out to new parents to tell them what to expect and where they could go

for help,” says Robin, who became part of the first steering committee which was charged with formally setting up an organisation for parents, the Down Syndrome Association (DSA).

Once the DSA was formally established, IHC very quickly came to the party with both moral and financial support.

“It was quite amazing how much support we got from IHC. They did not see us as competition, but as an extension of the work they were doing,” says Colleen Brown, who was also part of the steering committee, alongside Robin Borkin and Ngaire Brown.

The group initially focused on supplying the best possible information available to hospitals for new parents, but soon started focusing on the bigger picture.

“We were really focused on having our kids in the community,” says Colleen Brown.

“We did not want our son Travers to be segregated, but be part of our normal community, and other parents also felt very strongly about this.”

The 1980s were a time of considerable change in the disability sector as the New Zealand Government started moving away from institutionalising people with a disability and instead exploring new ways to be part of the community.

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Left: Tania Grose, Cindy Johns, Sandy Sandford & Bridget Snedden 1994 Centre: NZDSA 30th Ball, National Achievment Awards.

Committee & staff 2011

The Down syndrome movement received a huge impulse when Ngaire Brown was awarded a scholarship by IHC to travel to England and Canada, along with Colleen Brown, to attend a conference and explore the latest global developments.

“That trip and the UK conference were a real eyeopener for us,” says Colleen.

“I remember Australians doing a presentation about an experiment in which they were injecting people with Down syndrome with brain cells. It sounds crazy but in those days, people were trying all kinds of things to increase the potential of their children.”

Aside from the conference, Colleen says that their visit to Canadian schools in Toronto proved to be a game-changer for the New Zealand Down syndrome community. “ C a n a d a wa s to t a l l y i n to i n c l u s i ve education and were light years ahead of New Zealand.”

In Vancouver, Ngaire and Colleen met with early intervention specialist Dana Brynelsen whose work inspired the visiting Kiwis of what was possible at an early age.

“We were so impressed that we raised funding to bring Dana over to New Zealand in 1987 and she ended up doing a series of lectures all over New Zealand,” says Colleen.

In collaboration with David Mitchell from Waikato University, the DSA set up a series of 13 visits and meetings with early intervention providers throughout the country and then a large one-day seminar in Auckland run by the DSA. A follow-up report was released and directed to early intervention services nationwide After Colleen and Ngaire returned, their new findings galvanised the group of young parents in the DSA to start focusing on the education sector.

“We were now totally focused on full inclusion and social justice for our children.”

The parents from the 1980s all share stories of their child being barred from mainstream schools and even pre-schools because of their disability. And for many current families, not much has changed in 40 years.

Top right: Emma Ferrens & Alex Snedden, Down Syndrome Congress Canada 2006 Top left & bottom: Photo time at the National Achievement Awards 2011

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1998 — 2000

Left: Calendar photo shoot in 2011 Centre: WDSC 2009 Right: NZDSA President Neville Strong at the 30th anniversay ball & achievement awards

“Before the Education Act was changed in 1989, parents were told “They are never going to learn, so why would you want to send them to school?” says Colleen, who had been trained as a teacher and was able to identify the right people in Government who could help make the necessary changes.

She described that the 1980s was a period of great change with early intervention p ro g ra m m e s st a r t i n g i n Au c k l a n d , Christchurch and Waikato and many experts researching the potential of people with Down syndrome to learn and live full lives.

“The energy in that period was quite electric and we tried to capture that energy and could see the limitless potential of our children and the changes.”

In the mid-1980s, the DSA was invited with other groups in Auckland interested in Special Education, including IHC, the Deaf Association, Autism NZ, Parent to Parent and others, to set up a committee to lobby the new Labour Government regarding children’s access to education.

This group went under the name of The Coalition of Parent Groups for Special Education and was formed after it became aware that the Government was playing each of these individual groups off against one another in order to keep their protestations at bay, claiming lack of resources.

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The coalition very quickly came to the attention, especially of the new Minister of Education, Russell Marshall, who himself recognised the need to amend the Education Act regarding Special Education.

One visit by Minister Marshall to Aorere School in Auckland proved to be a watershed moment to gain political momentum.

“He couldn’t believe his eyes as he witnessed how some of our children were being educated,” says Colleen Brown. .

In 1989, the Coalition was eventually invited to put together a submission regarding what they felt were the changes they wanted to see in the Education Act. Many hours were put into this submission, which was submitted to the parliamentary sub-Committee for Education, along with our request to appear before the sub-Committee to further support the submission.

“Within a matter of weeks we learned that our submission had been incorporated into the amended Education Act almost word for word. This provided that all children had the right, in law, to go to school in New Zealand,“ says John Borkin, who at the time was chair of the Coalition.

“The big disappointment which followed this change in the Education Act was that the Government did absolutely nothing to support this change with any resources to help it to happen.

“A situation which hasn’t changed much, even today, nearly 40 years later.”

Fellow DSA committee member Rod Wills remembers that it was a lot easier in the 1980s for small groups to wield influence and get close to the decision makers.

“Back then you could speak to the Director of Special Education and the same with the Department of Health,” says Wills who was also the DSA secretary for many years in the late 1980s and early 1990s working alongside national coordinators Colleen Brown and then Lynne Stewart.

Wills had trained as a teacher, but after his daughter Sophie was born with Down syndrome in 1984, his voluntary and professional life was to become increasingly influenced by the disability sector and his experiences as a parent.

For many years Wills was responsible for producing a monthly newsletter for its 650 members and supporters.

“Before home computers and no internet, we did most things on a typewriter,” says Wills who retrained to be a social worker and ended up working at the Mangere Hospital at the time when the Government started closing the institutions for people with disabilities.

Wills, employed as a community team leader, found himself working with IHC and special schools as clinical services were established in the community; relocating those hospital-based occupational therapists, psychologists,

speech therapists and other practitioners to provide their services in the community for the residents, families and people already living in the community.

The policy of deinstitutionalisation s a w t h e d eve l o p m e n t o f n a t i o n a l training programmes for residential and educational staff. “I was invited to apply for a role at the Auckland College of Education, with a team developing the curriculum and resources for the training of community support staff and teacher aides.” Wills remained in that role for 25 years, the last 16 as a senior lecturer in disability studies at the University of Auckland.

As he ventured down the academic path, Wills increased his research into the experiences of families, children and adults within the disability sector. Following their own experience as a parent and receiving the diagnosis of Down syndrome, it was evident that much of the material used by New Zealand clinicians was out-dated.

“We started a big push for New Zealand doctors to stop using the text The Child With Down Syndrome-Mongolism which was written in 1973 and really out-dated. “ We h a d fo u n d B a b i e s w i t h D ow n Syndrome, a much more contemporary guide for parents written in 1986. This presented a lot of parents’ stories and family photographs alongside the medical and health material” says Wills.

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Left: Laura Harkins at the Youth Development Camp 2012 Centre: Filming Dress to Impress resource 2014 Right: STRIVE appointed 2012

“We got funding to buy 200 copies and provided these to every paediatrician in the country with the Paediatric Society endorsing the change in resource use to its members. In Auckland we went to every public library where the earlier text was held and provided copies of the new book.”

Working with other sector organisations, professional groups and universities, the Down Syndrome Association was instrumental in arranging the visits to New Zealand of two overseas leaders in the area of intellectual disability.

In 1991 through Wills’ advocacy and networking, the Down Syndrome Association arranged a two-week visit from leading speech-language pathologist Carl Parsons – Lincoln Institute of Health Sciences – Melbourne. Parson’s visit was coordinated with input from the speechlanguage therapists association and the new SES. His visit concluded with the delivery of a keynote address to the Beasley Institute national conference in Auckland. The visit was vital in showing the way to support and extend language acquisition and use

by young children when therapist input was limited. Links with the Down Syndrome Association of Victoria cemented this approach and provided families with the software for use in computer-based learning.

The collaborative approach illustrated the pathways possible in the changing educational environment of New Zealand in the 1990s. The Department of Education, and later Special Education Service initiatives involved Wills and Brown, along with other parents in writing and publishing material supporting parents’ access to the education they sought for their children.

In 1988 The Parent Pack was produced and thousands of copies distributed widely by the Special Education Division of the Department. A subsequent Parent’s Access Guide to Education was produced in 1993 by a smaller authoring group, but with a similar print run.

Alongside these initiatives the ongoing work of Wills and Brown was to d eve l o p f u r t h e r. Th ey b o t h h a d been involved in the work in special education practice to move toward

inclusive education.

Alongside this were their voluntary supports to parents seeking educational advocacy. This work had not been in isolation, but came about as part o f a c o l l e c t i ve g r o u p o f p a r e n t s , educationalists and researchers. The subsequent co-option and appointment of Wills and Brown onto the national policy development and governance groups in the Ministry for special education showed the possible outcomes of deep parental engagement. Inevitably as their own work followed a path through post-graduate study and publications in national and international texts, it led to Wills and Brown moving away from the Down Syndrome Association into their more recent roles; as a DHB member and a university academic.

During the first 10 years, the DSA was well supported by IHC through an annual grant to cover administrative costs and the newsletter, but in the early 1990s the DSA decided to engage a fundraising company which enabled the association to become a bit more independent from the IHC. Being at the helm of a charity and advocacy organisation takes its toll, and in

the mid-1990s, many of the early drivers of the DSA had moved onto other things.

“You just get burned out,” says Robin Borkin. “When your children are young, you are passionate and full of energy but as your children grow older and find their pathway, it is hard to maintain those energy levels.”

Thankfully, there were always new parents to pick up the baton, and in 1993 Bridget Snedden and Cindy Johns provided a fresh impulse to the New Zealand DSA. Snedden had been part of coffee groups in Auckland after her son Alex was born with Down syndrome in 1988, but the fire was truly lit when her son was expelled from kindergarten at the age of three “because he had Down syndrome”.

“Until that time, I didn’t even know what the word ‘advocacy’ meant, but after that day I decided to get involved, first with the Auckland association and later with the NZDSA. Snedden met New Plymouth-based Johns at an IHC meeting in the capital and decided to put her money where her mouth was.

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2003 — 2004

Top: 25th Anniversary at Government house Centre: Alex and Bridget Snedden with MP Paula Bennet 2010 Bottom: Meet & greet with families in Taranaki

The two joined the committee alongside Shayne Crabtree, Merrill Holdsworth, Tania Garrett and Neville Strong and Snedden s o o n fo u n d h e r s e l f i n t h e n at i o n a l coordinator role, which she held from 1993 until 2000.

“We got great support from JB Munro from IHC who agreed to put up a small honorarium for the national coordinator and allowed me to set up an office in their IHC office in K-Road,” remembers Snedden, who was recently appointed as the new President of Down Syndrome International.

During the 1990s, Snedden says the NZDSA continued to focus on parent support and advocacy and updating the existing material the association provided to parents.

“In that period, the local associationstarted getting more active, so we tried to support them the best way we could,” says Snedden, who admits that the NZDSA had been slightly Auckland-centric over the years but tried to become more visible as a national organisation.

Looking back in time, Snedden fondly re m e m b e r s t h e A s i a Pa c i f i c D ow n Syndrome Conference in 1998 as one of the landmark moments for the organisation.

“That conference provided a huge impulse and inspiration for many groups around the country, and I think the new association in Whangārei started pretty much straight after that.”

As the NZDSA headed for its 20th anniversary, Snedden decided to hand over the baton.

“I had put my heart and soul into the NZDSA and it was time for me to move on when my own children were teenagers.

The NZDSA needed new blood to build on what we all had achieved”.

Diane Doehring was appointed as the new National Coordinator in 2000, which meant that the NZDSA headquarters moved to New Plymouth.

Doehring had arrived from South Africa in 1994 and had been involved in the Down syndrome community after the birth of her son Andrew in 1985 and in her professional role as speech and language therapist.

“The thing that struck me when I arrived in New Zealand, was how relaxed the NZDSA was compared to South Africa,” says Doehring.

“In South Africa, the Down Syndrome Association was much more formal and structured and people who wanted to be a support person got a six-week training course, but in New Zealand anyone could become a support person, so we didn’t really know what those people were telling the new parents.”

With Doehring’s experience, the NZDSA created workshops for volunteers who provided local support. The National Coordinator ran the workshops for volunteers and regional representatives, which covered basic listening and advocacy skills.

In the early 2000s, the Ministry of Health started introducing the Ongoing Resourcing Scheme (ORS) and the NZDSA started advocating to get more specific speech therapy protocols in place for children with Down syndrome.

“I guess it was my field of expertise and close to my heart,” says Doehring who also served on SENRG (Special Education National Reference Group).

The NZDSA continued to update, print and distribute resource packs for new parents and Doehring also worked on the “Recommended Clinical Practice” document for the assessment and management of people with Down syndrome, which was produced by the Ministry of Health.

One important issue, Doehring remembers, was the NZDSA stance on prenatal screening.

“When I started, the NZDSA was in favour of screening but after a lot of discussion we decided to take a more neutral stance when the National Screening Programme was created,” says Doehring.

One of the biggest milestones of the new millennium was the first National Forum in Wellington in 2001.

Representatives from around the country gathered in Wellington to share ideas and listen to expert speakers.

One of the guests attending was Angela Harper who had emigrated from the United Kingdom in 1998 with her family that included her adopted daughter Lily, who has Down syndrome.

In 1999, Harper gave birth to Noah who also had Down syndrome, “and that really spearheaded our interest and passion for the community,” says Harper.

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Left: Sydney 2013 ASSID Conference Centre: DSA kiteday in the early 1980s Right: 2008 National Achievement Awards

S o o n a f te r t h e N a t i o n a l Fo r u m i n Wellington, Doehring stepped down and Harper was appointed as the new National Coordinator to support President Tania Garrett and her committee.

“What I remember is the incredible passion of all the people involved, and that hasn’t changed much I think. Everyone is very passionate and has very strong ideas so sometimes people end up butting heads,” laughs Harper, who also edited the quarterly Down Syndrome News.

“The newsletter at the time was not very attractive because it had no pictures, but the NZDSA allowed me to do a course on Pagemaker so I was able to make the newsletter a bit more exciting.”

Harper remembers that hardly anyone had the internet in those days.

“The magazine was really a lifeline for people in the regions, to get information and to communicate with each other, so I tried to keep the writing style as friendly as possible and keep the people in mind that I knew would be reading it.”

With Harper’s new skills set, the NZDSA committee at the time also decided to give the Welcome Pack and the Living with Down Syndrome booklet an overhaul.

“Allie Atwell, Kim Porthouse and myself spent a lot of time on that Welcome Pack and we were really lucky to bump into filmmaker Howard Taylor from Location, Location, Location and he agreed to turn the Welcome Pack into a video,” says Harper who adds that she was calling in favours left, right and centre.

Harper says that attending the World Congress in Singapore in 2004 was an absolute highlight but admits that her role at the NZDSA became all-consuming.

“I remember my garage completely being taken over by NZDSA materials.”

Harper decided to step down as National Coordinator in 2004, but agreed to carry on as editor of the magazine until 2006.

The position of National Coordinator was taken over by Zandra Vaccarino, who had only arrived from South Africa a year earlier.

“After I attended my first NZDSA forum in Palmerston North, Angela resigned so I applied for the job,” says Vaccarino who had earlier failed to secure the newly created National Administrator role, which had gone to Linda te Kaat.

This new double-act of te Kaat and Vaccarino became the face, the heart, soul and knowledge hub of the NZDSA for nearly two decades. Te Kaat stepped down in early 2021 after 17 years of supporting families, filling out funding applications and providing the administrative glue of the organisation.

Te Kaat says when she started it became clear that the NZDSA was not in a good financial state.

“At the time closing our doors was on the cards. Zandra and I had to reduce paid hours, but still worked long hours to try to get the organisation into a better position.”

With the help of a couple of wonderful supporters and a lot of funding applications, the NZDSA was able to get the organisation back to a healthier

position and the NZDSA survived to be what it is today.

“I am immensely proud to be part of the team that over the last 16 years has raised over $3.7 million for the organisation in grants, donations and fundraising,” says te Kaat.

Vaccarino remembers that when she joined the NZDSA, it was very much a working committee who did a lot of administrative jobs.

“Everything had to be done manually,” says Vaccarino.

The current National Executive Officer remembers that even a simple payment would involve one person organising the cheque, then posting it to another committee member to countersign it and then taking it to the bank.

The creation of the administrator’s role allowed the committee to be less bogged down with administration and to become more strategic.

“The NZDSA moved from operating as a working committee into a governance role,” says Vaccarino.

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2005 — 2006

Left: First family camp 2013 Centre: Expo in the Manawatū Right: The kiwi’s at the 9th WDSC

During the 1990s and early 2000s many of the regions had created strong local communities providing excellent support and resources for local families.

“As part of this new governance role, we started to formalise our relationship with the regions so we could support and represent them more effectively and coordinate activities around the country so more groups could benefit.”

After many discussion, the regional groups entered into a Memorandum of Understanding, which allowed the NZDSA to take on a truly national position as the representative body for the Down syndrome community.

“And these changes also included the creation of the zone representatives from every corner of the country,” says Vaccarino, whose role in 2007 formally changed to National Executive Officer (NEO).

“Advocacy with government departments became a much bigger part of the job. In the 1980s and 1990s that work had been very strong, but the advocacy work had gone a bit quiet in later years.”

Vaccarino explains how the NZDSA’s work became much more strategic through

influencing policy decisions that influence the entire Down syndrome community.

“We started creating longer term strategies to become the hub for all information on Down syndrome for anyone who needed this information, from parents to teachers, doctors and government agencies,” says Vaccarino.

One of the initiatives that Vaccarino has found most rewarding is the development and growth of the NZDSA self-advocacy movement which she introduced by hosting the first Link workshop in Nelson in 2005. “At this workshop, self-advocates made it very clear that they wanted to have a voice and learn more about advocacy, so we looked at worldwide self-advocacy trends and held more workshops.” This culminated in the establishment of the STRIVE group. In 2012, members of STRIVE presented their new group to the National Forum in Invercagill. They made a huge impression on all those who attended.

The National Forum was the biannual focus of the NZDSA from the early 2000s with guest speakers from around the world visiting New Zealand to educate regional representatives.

“Some years we would invite professionals as well, and one year in Auckland we opened the National Forum up to parents as well,” remembers Vaccarino, who adds that the focus of the forums would change from year to year from health to education and employment or what the need of the community would be in that period.

“Unfortunately, it proved to be difficult to attract large numbers of people, because of financial or logistical restraints.”

In 2014, the NZDSA made the difficult decision that the low number of attendees made it difficult to justify the significant resources required to organise the forums.

Instead the NZDSA focused on roadshows and taking key speakers to the regions.

“By that stage many regions were really organised and started to employ staff and had the resources to have workshops and new initiatives, so the NZDSA started looking at ways for other regions to get the benefit and share these initiatives.”

One example Vaccarino mentions is the UPP Club in Christchurch, for young adults and teenagers, which started in the early 2000s and has now been replicated in other centres. “ We c o n t i n u e d t o b r i n g r e g i o n a l

representatives together to share their knowledge and new ideas, which really was the principle of the forums but we have been able to make it much easier and more accessible.”

New funding from Southern Stars also enabled the NZDSA to bring a longcherished concept to life, through its Youth Development Camps. Each year the regions can nominate a young adult and a parent to join the Auckland camp to gain confidence, learn new skills and make new friends.

“Our young adults told us they like to hang out together but not necessarily in the classroom or conference centre, so we created the camps that are physical and fun. And we make sure that nobody is excluded through our high-needs camps as well.”

The Down syndrome community around the world continued to get more organised and become more visible but the launch of World Down Syndrome Day on March 21 each year, really captured the imagination inside and outside the community.

“Each year Down Syndrome International will take the lead with an annual theme that the NZDSA will use in New Zealand

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to raise our profile locally,” says Vaccarino.

“As part of WDSD we have produced many wonderful videos with our self-advocates that have been used widely through social media and mainstream media to share the international message.”

World Down Syndrome Day has continued to grow with a huge amount of activities and fundraising by local DSAs and schools, from the now well-established Buddy Walk in Auckland to the smaller events around the country.

“Children are wearing odd socks to raise awareness at their local schools, local groups organise tea parties to raise funds and the media is really starting to take notice of WDSD,” says Vaccarino.

The National executive says that the NZDSA, like other organisations, embarked on significant operational changes in 2011 to meet the criteria to register under the Charities Commission.

“That really forced us to become a lot more organised and deal with constitutional, financial and structural compliance that may have been less of a priority in the past. It was a lot of work at the time, but everyone would agree that it put us in a

much better place for the future,” says Vaccarino.

As part of creating a stronger foundation for future generations, the NZDSA board decided to dedicate a significant amount of resource to capturing the knowledge that had been gained over the years and make it more readily available.

“Because we discontinued our Regional Forums, we needed to find new ways to share our knowledge with families using modern technology,” says Vaccarino.

The NZDSA started work on a new website that would operate as a news and information portal, as well as database for the entire community.

NZDSA staff and committee members spent endless hours researching old journals and other documents to find information that had been gathered and shared in the past and present it in a new, modern format.

“We discovered that many of the dayto-day issues our families face today are not much different than they were 40 years ago, whether it was about h e a l t h , e d u c a t i o n , e m p l oy m e n t o r independent living.”

The NZDSA created a state-of-the-art website where all its existing and new resources are available to the community and professionals.

The site now includes extensive sections for news, resources, support networks and information on how to access the appropriate support.

“It has grown into an amazing asset for the NZSDA and as we will grow, the amount of content and resources will keep expanding for generations to come,” says Vaccarino.

Like every other part of society, the Covid-19 pandemic has been difficult for the Down syndrome community, but Vaccarino says that the families had overcome the challenges remarkably well.

“And it also taught us many new skills like video calls that have proven to be a godsend to keep connected and share information.”

While all face-to-face World Down Syndrome Day events had to be cancelled in 2021 due to the Auckland lockdown, the community managed to get together in the digital world. “The Big Connect was an incredible event, with over a hundred families, the Disabilities Commissioner and

even Minister Sepuloni joining the WDSD celebrations. From adversity we managed to create an event that nobody in our community will ever forget and it inspired us to embrace new technology to connect all corners of the country,” says Vaccarino.

The NZDSA continues to evolve and from an early coffee group to basic newsletters on typewriters, the association grew to create astonishing educational and social events and will mark a new era and its 40th anniversary with the largest Virtual Down Syndrome Conference in New Zealand history.

“There may be different faces and our activities may look slightly different, but the passion and reasons for wanting to improve the lives of people with Down syndrome, is just as strong and not much different as it was 40 years ago,” says Vaccarino.

“In October we want to recognise and thank all those wonderful people who have gone before us and motivate the next generation of mums, dads a n d s i b l i n g s t o ke e p p u s h i n g t h e b o u n d a r i e s to s u p p o r t a n d i n s p i re each other.”

Left: Picnic in the early 1980s Right: Lily Harper at the 2004 world congress in Singapore

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40 YEARS: PRESIDENTS, COMMITTEE MEMBERS AND STAFF President/ Chairperson

1981—1984 Simon Hunt 1984—1990 Colleen Brown 1990—1993 Lynne Stewart

1993—1997 Bridget Snedden 1997—2000 Hugh Kininmonth 2000—2006 Tania Garrett

2006—2012 Neville Strong 2012—2018 Shelley Waters 2018—2021 Kim Porthouse

NZDSA committee members & staff

Alison Attwell Ange Hawke Angela Harper Angela Hawke Angelique van der Velden Ann Hopkirk Ann O’Connor Anya Bowman Averill Glew Bev Smith Bridget Snedden Bridie Allen Bronwyn Morgan Bronwyn Rydon Carmen Slater Carol Nesdale Caryl Earwaker Luthy Cherie Marriner Cindy Johns Coen Lammers Colleen Brown Dan te Kaat Debbie Howard Debbie Welsh

Diane Doehring Dianne Burnett Gareth Smith Geraldine Whatnell Grace Perry Gwen Matchitt Gwenda Whyte Hugh Kininmonth Jackie Vallance Jan Cairncross Jane Taylor Jennifer Leggat Jenny Harkins Jess Harkins Jess Scarsbrook Jess Waters John Borkin Judith Ashby Kathryn Sadgrove Kerry Ryan Krissy Solin Leanne Day Linda Easterbrook Linda te Kaat

Maria Borshevsky Maureen Cahill Maxwell Riddle Merrill Holdsworth Ngaire Brown Rhonda Johnson Robin Borkin Robyn Dixon Rod Wills Rose te Kaat Sara Fraser McKenzie Sharon Rodgers Sharon Sheard Sharron Blundell Shayne Crabtree Sue Hartley Tania Garrett Tania Grose Tricia Wilson Vivienne Thompson Willie Robinson Zandra Vaccarino

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* NZDSA staff have tried to find as many names from the past 40 years as possible in old documents and from our members’ memories, but we are unsure this list is complete, so we apologise to any committee members or staff who we may have missed out. Thank you all for your service to our community.

2007

HOW THE ASSOCIATION WAS BORN

By John Borkin

Forty years ago things were very different from today, especially if you were the parent of a child with Down syndrome.

Psychopaedic hospitals were still around and doctors were still in the process of withdrawing from advising parents of such newborn babies not to take them home. Life expectancy of people with Down syndrome in New Zealand was only thirty seven years.

The right of children with Down syndrome to go to school was not protected in law and because there were so few people with this condition living in the community, most General Practitioners and many medical specialists were very unsure of how to treat them if, by chance, such a person turned up as a patient.

Besides, specialist care referrals for eyes, ears, heart etc. was more by chance than by intention.

This was the world our son was born into.

Fortunately, we were not deterred from taking him home and were told we could be surprised at what “he might be able to do” as he grows up.

I, for one, was ignorant of Down syndrome then, but my wife, a nurse, knew more from when she was young. Whilst at school she was appointed “buddy” to a girl with Down syndrome whom her local country school had “allowed to come to school”.

The social worker from IHC was an absolute godsend in helping my wife face up to and accept the reality of where we were at.

A few weeks after taking our son home from hospital we were contacted by Mangere Psychopaedic Hospital and asked if we would consider being involved in their “early intervention programme”.

We agreed and found this home visiting service to be immensely valuable.

It helped us to the awareness and realisation that many of the basic things we assume a baby will do like rolling over and sitting, up cannot be taken for granted and in our son’s case the so called “instinct” of putting things in his mouth, yes even food, had to be taught. (He was five years old and at school when he mastered that one.)

We were not the only family involved with this service. We soon learned of half a dozen in Auckland with similarly aged young children with Down syndrome.

Through the encouragement, particularly of a social worker involved with the programme, we agreed to host a mothers’ playgroup meeting at our place on a weekly basis.

These get-togethers for the mothers, where they could chat and compare their experiences and their problems, talk about how they were told, or not, about Down syndrome, discuss issues with their babies (and their husbands and how they – the husbands - were coping) as well as the services in the community available for babies with Down syndrome and their mothers were a great success.

The group followed us to our new house in

Howick when Edward was eleven months old. Even the dads enjoyed the fellowship t h i s g r o u p p r ov i d e d . B e s i d e s t h e occasional social evenings for everyone, the dads established an indoor cricket team and competed in a local weekly competition.

We all got to know each other and got on well. The network was forming.

Sometime later, perhaps a year or so, discussion came around to formalising our group into an association and inviting others to join.

We were certainly aware of the wider Down syndrome community by this stage and what was available or not to families generally, and we all had heard stories of what we could expect for our children, very little of which filled us with much joy.

A steering committee was formed to pursue the idea. The initial meetings of this committee still took place at our home in Howick.

IHC became aware of our group and rather than seeing us as opposing their organisation, supported us and our intentions. Thanks to the good will of their senior people they even supported the emerging organisation with funding.

The Down Syndrome Association was on its way and the rest, as they say, is history.

Of course time has moved on.

Heavens, it’s over twenty years since Edward left school. It’ll be twenty years this year since he started his job at Pak’n’Save Botany and he’s still there.

The Down Syndrome Association has matured and evolved too. There is now a National organisation and regions all around the country and active groups in all those regions.

The active campaigning that we, along with other disability groups, did in those early days resulted in the Education Act being changed to give people with an intellectual disability the legal right to go to school jn New Zealand, but the battle for resources for children in Special Education is ongoing, even today.

As I reflect now on the advocacy that we pursued for our children in those early days I cannot but be filled with pride when I witness them undertaking their own advocacy through the “Strive” Leadership Group which the NZDSA now has operating from within its own membership across the country. Who could have imagined it?

And I guess therein lies the point. People with Down syndrome are only limited by what our imaginations allow.

Finally, it’s taken quite a while but Edward moved into a flat last November with one other person and he’s loving it. He’s finally left home.

I am reminded of the words of old Dr Tonkins from the old, now demolished Mangere Psychopaedic Hospital, when Edward was only a few months old: “The thing about these people with Down syndrome is that they get there in the end.”

2007

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2008 — 2010

One meeting that changed history

By Colleen Brown

I remember so clearly the first meeting of people interested in forming a parent support group at the former Mangere Hospital in Auckland. Some of us knew each other as we’d been introduced by a social worker – Sue Storey and we had formed a loose ‘coffee group’ of new parents.

Others had met at the Mangere Hospital play group. So many faces. So many questions, and with a new Early Intervention service starting up from Mangere Hospital, I’d definitely say there was hope in the room as well.

That particular year – 1981, there had been an unprecedented number of children with Down syndrome born either that year or the preceding year.

There were parents of all ages and backgrounds at the meeting. I even remember one new-born in a carry cot brought along by his mother. The one

thing we had in common was the desire to create the very best life for our children who had been born with Down syndrome.

I was part of the first committee formed.

We were supported financially by IHC and the CEO, JB Munro gave us advice and listened to our concerns.

The best way forward we thought was to create opportunities for families to meet.

We arranged for evening meetings with guest speakers.

We held our first regional seminar at Hillpark Primary School in Manurewa where Dr Deryn Cooper taught us how to be assertive and Dr David Mitchell from Waikato University spoke to us about how to advocate on behalf of our children.

We set up family picnics in summer and kite days at the Auckland Domain and I edited the newsletter with a local resident typing it up for us to print off and post to members.

Like many parents today across New Zealand who are part of the Down Syndrome Association, our lives were very busy. From a personal perspective, we had two more children, I went back teaching, completed my Master’s degree, then lectured.

I started writing about disability issues focussing on how families struggled with the policies and restrictions of the day impacting on their children.

I was asked to speak to particularly principals and teachers about the need for inclusive attitudes towards disabled students.

I think many families were shocked at how segregated disabled children were in our community and many of us set out to challenge the system and those barriers.

Having the Down Syndrome Association at our back gave us strength and direction.

We didn’t always get it right but we put a

huge amount of energy into trying to shift perceptions and attitudes.

From the skills and relationships we forged during that period, a number of us went on to get additional skills via a Parentto-Parent course run by Ray Murray at the College of Education in Epsom. The impact of having a member of your family treated differently challenged us in ways that we could never have predicted when we started this organisation.

Some of those committee members went on to be part of the Coalition of Parents for Special Education, lobbying government along with other organisations, for a change in the law to enable our children to go to school as of right.

We wanted less of the grace and favour from principals and more of the right to belong in a school community.

Image 1: The Borkin clan in 2021 Image 2: Olivia, me, Travers (2 1/2 years) on my knee, Barry & Julia Image 3: Colleen & Travers Brown Image 4: Travers Brown at picnic in early 1980s

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Image: Travers wearing his grandfather’s medals, with dad Barry wears his own father’s medals on Anzac Day

Others changed employment direction to work in the disability field. Some of us wrote about our experiences, others supported disabled students in sporting codes, others went into counselling.

Many of us became lifelong friends.

We lobbied ministers of the crown, we badgered officials and challenged not only the education system, but the health and welfare systems as well.

Reflecting on those times, with no cell phones or email, no Zoom meetings, I’m not sure how we did it all. We relied on the ‘telephone tree’ and snail mail so we had to be incredibly organised.

The energy was electric at times. But it wasn’t all endeavour – many of the fathers played indoor cricket – the Tri-21s, we had lots of laughs and get togethers.

I remember travelling to Palmerston North and Rotorua to start up groups – with Julia, our third child as a toddler. And as an organisation we kept on growing, until

we were the length and breadth of the country.

There was a need and a desire by many to make a difference, to be part of the change that we could almost smell in the air. I believe we did make a difference.

The children we went into battle for are now adults themselves, living their own lives, for the most part in the community.

When I reflect on those times, I shake my head at our dedication, our resolve and our forthright attitude to change the system.

Some of us are still fighting battles, which have emerged as our own children have gained adulthood and moved into the community. There is much work still to be done.

It is heart-warming to see the Association go from strength to strength and know that many of the same ideals we talked about are still at the forefront today.

2012

2013 — 2014

Building on the pioneers’ achievements

By Bridget Snedden

Our family was fortunate that Alex was born in 1988 as he would live in a different era than the prior generations of people with Down syndrome.

Large group homes were on the way out, the legal right for every child to attend their local school was almost upon us.

There was also a strong movement for systemic change.

The pioneering parents and their allies from the Down Syndrome Association had fought tirelessly for Social, Education, and Health reforms, and Alex would go on to benefit from these reforms.

I will be forever grateful for their efforts given so unselfishly.

When Alex was a toddler, he got expelled from his local kindergarten. This event set me on the path to creating the best life possible for Alex and our family.

This vision we held for Alex was for him to live in the community with neighbours and friends. To achieve this, I learned to become an advocate and to increase my knowledge about disability issues, including how government systems operate.

The best place to start to do this was to join the Auckland DSA Committee.

Meeting Cindy Johns at IHC offices in Wellington was to be the start of a lifelong friendship. A couple of years after I met Cindy, we came up with a plan to revive the NZDSA National Committee. It was decided she would be treasurer because she had been a bank teller when she left school and I would be the co-ordinator as I could do the talking.

The enthusiasm from other parents and the support of IHC motivated us. The Vision we had for people with Down syndrome and their families inspired us to do the best we could in providing current information, support, and advocacy.

Committee members and the national coordinator freely gave their time to build on what had been done by the parents who had gone before us.

When I spoke to Cindy today she reminded me that JB Munro, the IHC Chief Executive at the time, took us for coffee and told us that IHC would give $10,000 to the NZDSA

for the newsletter and to cover the cost for national committee members to meet three times a year.

A few months later, JB Munro offered an honorarium for the National Co-ordinator and office space at IHC in Auckland at no charge. We thought we had won the lotto.

The highlight and personal achievement for me was the 1998 3rd Asia Pacific Conference on Down syndrome held in Auckland for families and people with Down syndrome.

Cindy Johns, Merrill Holdsworth and I spent many months organising this event with the support of many parents.

We had the most up-to-date thought leaders from across the world as well the most inspirational presenters with Down syndrome.

Left: Lawrence, Emma & Alex 1988 Right: 1991 Auckland Support Group

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Image: Shelley & Rochelle Waters

Welfare of people with Down syndrome at heart of the NZDSA

By Shelley Waters

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My husband and I entered the wonderful world of Down syndrome on the 23rd December 1994 when our beautiful wee girl, Rochelle, was born. In the hospital I was given information on joining the New Zealand Down Syndrome Association (NZDSA) and, when I felt ready, I joined the NZDSA and have never looked back!!

I loved receiving the NZDSA Journal (now known as CHAT21) each quarter and attending events the NZDSA hosted and knowing support and information about anything to do with Down syndrome was only a phone call away.

In 2008, I joined the NZDSA National Committee as the Zone 5 representative.

Right away I was impressed with the culture of the NZDSA Committee and staff – it was very family focussed and the welfare of our members with Down syndrome was always at the forefront of the organisation, and still is today.

In 2012, I took over the reins from Neville Strong as President. These were big shoes to fill but I felt honoured to assume this role for such a dedicated organisation. The staff at the time, namely Zandra Vaccarino, Linda te Kaat, Sharon Sheard, Jess Harkins and Dan te Kaat were all amazing to work with and the Committee members were a group of dedicated volunteers who kept the mission and vision of the NZDSA always at the heart of the organisation.

The setting up of the self-advocacy leadership group, STRIVE, initiated whilst Neville was still the President, has been one of the highlights for me during my time on the National Committee. Seeing these self-advocates grow in confidence and be positive role models for people with DS has really impressed me, and their mentoring of future STRIVE members is very cool.

The National Committee meetings in various regions around the country, the National Achievement Awards, the National Volunteer Awards, the various workshops, forums and camps have also been a highlight for me, as this has been a wonderful way of meeting families, carers, funders, stakeholders and all the amazing people with Down syndrome who are a constant inspiration.

I finished my term as President in 2018 and have remained on the Committee since, with my current role being that

of Treasurer. Due to Zandra and Linda’s diligence with finances, the NZDSA has remained in a strong financial position whilst I have been involved, which has meant the NZDSA has been able to provide valuable services to its members.

I have seen the organisation grow from strength to strength over the years and with new technology advancements, it is very exciting to see how the NZDSA is progressing and embracing the new environment of Zoom, thanks to COVID-19, and the social media outlets available.

The employment of more staff is also an indication of how the organisation has grown and developed over the years.

I feel very privileged to have played

a small part in the NZDSA’s 40 year history and am very proud of the way the NZDSA has adapted to the changing environment brought about by COVID-19.

The dedication of all the staff, National Committee members and contractors, and support from all the members and regions throughout the years, are what makes this organisation a truly great organisation to be a part of, and I would like to acknowledge each and every one of you who has contributed to the NZDSA over the past 40 years in some way or another, in particular the founding members.

What a fabulous community we belong to.

We l l d o n e N Z D S A – k e e p u p t h e great work!!

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2015 — 2016

President’s Pen

FROM INJUSTICE TO INTEGRATION NZDSA President Kim Porthouse looks back at the changes she has seen in the Down syndrome community over the past four decades.

The NZDSA observes its 40th Anniversary this year and this edition of CHAT 21 celebrates our history, our journey and what we have achieved as an organisation.

We also look to a positive future not only for our organisation but for the lives and achievements of people with Down syndrome.

This year the committee has been working on the next five-year strategic plan and we hope that each and every one of you will continue your journey with the NZDSA and be a part of the driving force that builds on the momentum that has seen people with Down syndrome no longer hidden and shut away but now active members of their community.

At its core, the NZDSA sees its role as one that supports, informs, and advocates alongside people with Down syndrome, families, whānau, and professionals toward a vision that people with Down syndrome are respected, valued and equal members of their community, fulfilling their potential and aspirations.

The 40th anniversary gives me an opportunity to reflect on my personal journey, not only the journey of a parent or my journey with the NZDSA, but from my first brush with disability and Down syndrome and how my experiences have influenced my long-standing view that people with disability have value, and of the need for the inclusion of diversity within society.

It is also 40 years ago in 1981 that my journey started, I was a second-year student nurse and went on a rotation to Kimberley - a psychopaedic hospital in Levin.

This experience shocked me to my very core, it is there that I witnessed institutional living on a grand scale, hundreds of people lived in this place. There were

wards and wards of people with varying intellectual disabilities, some people had both physical and intellectual disability, and while there were many more adults than children, there were people of all ages from babies to adults with a wide range of conditions.

I was struck by the ‘production-line’ manner in which people were cared for throughout the day, including bathing, dressing, and mealtimes.

For many, days were mostly spent in a dayroom, there were limited staff and few activities to stimulate the residents. Some children attended the school room – it was more like a kindergarten than anything else.

Amongst the “patients” were those who had Down syndrome, and there were many people with Down syndrome living within this institution. Instead of having their own room, they lived in ward-like quarters that slept 10 or more people, with each person having nothing more than a bed, bedside cabinet and a small cupboard, with only curtains to divide each space.

I saw adults with Down syndrome that appeared to have little else to do other than just hanging out together or walking around the grounds, occasionally I noticed a couple hand-in-hand with each other.

These people did not appear sick, it seemed obvious they were just shut away, isolated from their families and unvalued by society. I was struck by an overwhelming sense of sadness and injustice.

I couldn’t fathom why they wouldn’t be living either with their families or at least in normal houses (be it with some support).

A few years later I worked briefly for IHC, they ran an occupational workshop as well as residential homes. Whilst the workshop still segregated people from society and the work was mainly menial and repetitive, people at least were gainfully occupied with the opportunity to contribute. I did notice the pride and self-esteem they got from their work.

Generally, the clients were living in residential homes, some had live-in house

supervisors but in a few, the residents lived without 24-hour supervision. I thought this IHC set-up was infinitely better than the situation I had witnessed at Kimberley.

Then in 1990 I moved to Ōtaki, and on my first journey to the supermarket I met Tim, a young adult with Down syndrome.

He worked at the supermarket doing the trollies and packing shoppers’ groceries, but he was also greeting customers with a cheery hello.

I remember thinking how fantastic it was to see him given the opportunity to work in his local community. Tim became a bit of an icon of our local New World where he worked until his retirement earlier this year.

Everybody knew Tim and he knew all the regulars who all enjoyed a bit of banter with him. He truly has been a valued member of his community. In 1995 I also became good friends with Tim’s sister-inlaw and so got to witness how valued and loved he was within his family.

When I became pregnant for the first time in 1994 my doctor offered me amniocentesis – I was over 30 and therefore, in her view, at risk of a baby with an abnormality, there was no scans or blood tests for screening, just straight to a risky procedure!

I think due to my fortunate exposure to people with disability I knew instantly I didn’t want this test, I knew I would love any child I was blessed with. Frustratingly, s h e t r i e d to co nv i n ce m e to h ave amniocentesis several times. This did one thing – it cemented in my mind that I believed people with a disability have value and a right to be born.

My first child was born without disability, and when I became pregnant a second time and nuchal scans had become available, I still had no hesitation in declining this screening. In February 1998 Brendon was born and he has Down syndrome. I went through the normal grief reaction and wondering why me, but at the same time admonishing myself for feeling this way as it was contrary to my beliefs.

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Left: Some of the committee & staff members having dinner & celebrating Christmas 2014 Centre: Link group & STRIVE 2012 Forum Right: Strive forum 2014

Brendon had a life-threatening heart condition and I soon realised I wanted him to survive, and Down syndrome was secondary.

A few days after Brendon’s birth I spoke with Tim’s parents and as they spoke with pride of the joy he bought them, I knew I would be the same and Down syndrome didn’t really matter.

Following Brendon’s birth, one thing that really got to me was the general reaction of others – the “I’m so sorry”, the “didn’t you do the testing?” (Obviously with the assumption I would have aborted him if I had!), and the “oh, it must be so hard”.

All these reactions reinforced in my mind how unvalued people with Down syndrome were in society, but equally reinforced in my mind that it isn’t the way society should be and I wanted somehow to change attitudes.

When Brendon was two my Great-Aunt told me she had also had a child with Down syndrome around 60 years earlier, she also told me how they “just took him” and she was told to “go home and forget about him and have another baby”.

He was put in Kimberley, she never saw him again and they were informed he

had died at the age of 4. She told me she wished things had been different.

Similarly, Tim’s parents told me how when Tim had been born doctors had basically recommended to them to put Tim in an institution, but they had ‘bucked the system’ and taken him home and through involvement with IHC, they had joined the fight with other like-minded parents, for the rights of people with intellectual disability.

I was thankful for such parents, by the time Brendon was born, shutting our children away was no longer the default position, and not something offered to me.

The NZDSA didn’t exist when Tim was born, but 10 years later it was similarly visionary parents who came together and formed the NZDSA, offering support and networking to parents and sharing their goals of doing the best for their children.

It was for these same goals that I became i nvo l ve d w i t h t h e D ow n Sy n d ro m e Association.

I first joined the Wellington group (WDSA) and I attended coffee mornings. It was wonderful to meet other parents and I remember thinking how good it was all these children were with their families,

being loved. I soon joined the WDSA committee, becoming the Regional Coordinator after a couple of years.

When Brendon was two, I also joined a n ew l y f o r m e d , p a re n t - r u n e a r l y intervention group in Palmerston North, called ABCD Trust and became the Treasurer on the Board of Trustees.

Through my involvement in these groups, I soon became involved with the NZDSA. In 2002 when Brendon was 4, I was asked

by Angela Harper who coordinated ABCD and was the National Co-ordinator of the NZDSA to get involved in putting together the original “We welcome your Baby” pack for new parents.

Brendon and our family were featured on the video, and I co-authored the booklets and brochures within the pack. We were also involved in the creation of a new logo for the NZDSA at the same time.

In 2004 I attended a forum in Palmerston North, it was hosted by the NZDSA and brought together representatives from around the country. There was discussion around the future direction and what people wanted from the NZDSA. It was a highly motivational forum and inspired all who attended.

The regions wanted more opportunities to network with others around the country, NZ relevant resources for parents and opportunities to attend educational workshops. It was decided to run bi-yearly forums that included guest speakers on a range of topics.

Over the next 10 years the NZDSA did run the forums which also included youth development workshops for people with Down syndrome. These continued until in the end poor regional attendance and spiralling costs sadly made it unrealistic.

The NZDSA also produced a series of resource videos and booklets over this time that proved valuable to both parents and professionals.

In 2005/2006 myself and some other regional representatives also attended a meeting with then President Tania Garrett and other NZDSA representatives to discuss the future structure of the NZDSA committee. It was at this time the current Zonal representation of the NZDSA committee was formed, and was put in place at the AGM in October 2006.

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2017 — 2018

Left: Camp 2014 Right: Tim Faith at his job at New World

I wasn’t in a position at that time to get involved in the NZDSA committee due to my studies but I knew I would want to be more involved with the NZDSA in the years to come.

In 2004 the NZDSA appointed a National Administrator and Linda Te Kaat became a long-standing and valued employee until her resignation in March this year. Linda’s careful financial management and skill with grant funding was critical in building the stability and strength of the NZDSA. That same year was also the year the then National Coordinator Angela Harper stepped down and Zandra Vaccarino was employed. The position title changed to National Executive Officer along the way and more accurately reflects the importance of the role.

Zandra is another highly valued employee and still continues in her pivotal role. Her

knowledge, skills and networks have been crucial to the success of the NZDSA. Whilst not forgetting the valuable role of the various National Committee members over the years who have supported and shaped the vision and mission of the NZDSA, it must be recognised that for many years Zandra and Linda have had vital roles in building the NZDSA into a successful organisation that advocates for and shows leadership in the lives of people with Down syndrome.

Other staff have also supported these roles, Sharon Sheard provided administrative assistance to Zandra and kept us all informed via eNews.

After Sharon resigned, Jess Waters was employed as Social Media Officer, doing not only the eNews, but running our Facebook page and managing the (old) website.

In 2012, I once again became involved with the NZDSA becoming the Wellington Zone Rep on the National Committee, a position I held for 6 years before becoming the President in October 2018.

The 2012 AGM and Forum was held in Invercargill and it was there that the members of STRIVE presented themselves and their goals as a committee of selfadvocates. WOW! The NZDSA was no longer just the voice of parents, it was also empowering people with Down syndrome and providing an avenue for them to have a voice on matters that were important to them. I was so inspired — what a contrast to the lives of people with Down syndrome I had witnessed back in 1981.

In 2013, the NZDSA rebranded and a new logo (the current one) was developed with the aid of Dan Te Kaat.

Dan became a contractor to the NZDSA as Graphic Designer, responsible for the layout of the journal and any branding on resources etc. Dan continues in this role today. We also renamed the journal to CHAT 21 as part of this.

As part of our strategic plan, we identified the need to update the NZDSA Website in line with our branding, but we also needed to provide the ability to sign up to become a member online. This meant integrating our membership database behind the scenes with the website.

As people did more and more online, this project became bigger and bigger and Dan did an incredible job project leading us through this. It is fantastic to at last have this project come to fruition, and we now have a modern and informative website, with more and more resources and information being added. DVDs have given way to online videos and resources.

Over recent years, written resources have been updated and new resources created, our CHAT 21 editor Coen Lammers has done an incredible job of bringing together and sometimes generating the abundance of resources that are now uploaded on the website, Dan has ensured the consistency of design.

It has never been as important as now to have a strong online presence and the NZDSA has been able to respond

and adapt, running webinars and online workshops, committee and staff meetings are being held by zoom and we are also using zoom to connect parents, regions and most importantly, people with Down syndrome.

F o r s eve ra l ye a r s t h e N Z D S A h a s celebrated World Down Syndrome Day by running awareness campaigns often creating video clips featuring people with Down syndrome delivering key messages to parents and/or professionals.

Every year the NZDSA runs self-advocacy workshops and youth development camps that aim to further empower attendees to live life to their full potential.

Also, during my time on the committee, media has become more involved, running stories via print, radio and television on issues that impact the Down syndrome community. The NZDSA is now often a first point of contact to provide representation for our community, and this has seen our advocacy role expand.

With Coen’s help the NZDSA has also started to generate positive media opportunities. Government agencies now also seek the voice of the NZDSA to represent the Down syndrome community.

Antenatal screening for Down syndrome has become more of an issue and has often been highlighted in the media. As a midwife I have good knowledge of this testing and have also been witness to less than optimal standards of care when it comes to this subject.

The law requires women to make fully informed decisions around testing and yet too often only medicalised information is given, whilst information on the lives of people with Down syndrome is sparse at best.

Women have also reported feeling p re s s u r i s e d to m a ke d e c i s i o n s o n termination when faced with a positive diagnosis. I feel passionate that women have the right to fully understand this testing and they should feel supported to make their decisions based on their values and especially, they should feel supported if they choose not to screen or when they make a decision to continue their pregnancy after a positive diagnosis.

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I have felt privileged to represent the NZDSA both with media and at meetings with the National Screening Unit to build awareness and knowledge of the issues existing around screening and advocate for more balanced information being available, better training of health professionals and for availability of counselling for parents.

Wh i l st s o m e t i m e s I m i g h t st i l l g e t saddened by some old societal attitudes and injustices that persist, I never get disheartened because there is so much to celebrate. Children live with and are loved by their families, and they are integrated into their local mainstream schools.

There are also so many stories now of young adults following their dreams, finding jobs in mainstream workplaces, going flatting, being involved in sport and dance and drama, even getting married.

They are having their voice heard in a growing number of platforms. So many are making and living their lives within society, no longer cut off from it.

Through my involvement with the NZDSA and the Down syndrome community, I have born witness to all the proof that I

ever needed that people with disability absolutely deserve their place in society.

I have seen significant improvement of both the acceptance of disability and the integration of people with a disability into their communities over the past 40 years.

It drives me to continue to play my small part in improving the world for our Down syndrome community — I feel the future is bright.

The NZDSA was born out of a need for parents to be able to support each other in an era when there was so much injustice toward their children within society, and throughout its 40-year history it is the strength of the parents and whānau that have been at its heart, that has seen it grow into an organisation that not only offers support and information but has pathways for empowerment of young people with Down syndrome and pathways for their voice to be heard and valued.

The NZDSA now has impact across our wider society and it is committed to seeing the continued integration of people with Down syndrome into our society.

2019

2020 — 2021

THEN & NOW

By Zandra Vaccarino

Image: First self-advocacy workshop 2009

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My first involvement with the NZDSA was at the 2004 Forum held in Palmerston North.

What struck me at the Forum was the passion of the people who attended and how much was happening in the country; and 17 years later, I am still in awe of the passion of the Down syndrome community. I was surprised when the value of exploring a formal affiliation between the National organisation and regional groups was discussed as I had assumed that some affiliation arrangement was already in place. A motion was put forward at the end of the discussion to establish a subcommittee to create an Affiliation Document.

I also found it unusual that there were no people with Down syndrome at the Forum. I had worked for a Down Syndrome Association in South Africa, and we had involved people with Down syndrome in events like the Forum, so I had expected to see the same arrangement.

At the time of attending the Forum, I was a volunteer on the Manawatū Down Syndrome Committee and didn’t know that a few weeks later I would be employed as the National Coordinator, taking over the role from Angela Harper. I recently found out when looking at archives that the Forum in 2004 was the first Forum held in New Zealand; and I was actively involved in organising all future Forums until the final Forum held in Auckland in 2014. The NZDSA continued offering opportunities to share information by deciding to take workshops to the regions; and continues to offer face-to-face workshops. The most recent is a series of workshops held in MidCentral for people with Down syndrome as well as workshops for parents and whānau, empowering them for the disability system transformation prototype.

I would never describe COVID-19 as a highlight, but it has had a significant impact on the operation of the NZDSA

and despite the challenges, it has allowed us to pivot and embrace technology as a means to connect with our community. The repeated lockdowns have facilitated our community to utilise online technology and the NZDSA has embraced the opportunity by offering online social gatherings and information sessions during the different lockdowns. It also enabled us to host national events like the Big Connect to mark World Down Syndrome Day; and another first is in October when we host our first online conference.

I recall that one of the first tasks I was assigned to work on was to assist the subcommittee to complete the work on the Affiliation document and I remember as a fairly new immigrant having to study the map of New Zealand very carefully as the sub-committee discussed how to demarcate regional zones.

The second project I got involved in was organising the 2005 Forum in Nelson. I approached the NZDSA Governance to include a stream for people with Down syndrome which was called the Link workshop. It was at this Forum that people with Down syndrome asked to attend future Forums and to have more training, which was the impetus for starting the selfadvocacy movement for people with Down syndrome and which has subsequently led to the development of the first selfadvocacy workshop in Christchurch in 2009 and the appointment of STRIVE, the NZDSA’s self-advocacy leadership group in 2012. What a privilege it has been to be part of the self-advocates’ growth and how much they have taught me.

When I joined the NZDSA it had limited resources. We had the New Parent Pack which had recently got revamped and Angela Harper launched Living with Down syndrome shortly after I joined.

When I started, the only way of sharing resources was to post out hard copies; but the NZDSA has invested in developing

our website and now our resources are available online for everyone to access.

It is a highlight to know that we have now developed resources across the age spectrum and areas of interest. We will be launching two new resources in October to mark World Down Syndrome Month and will continue to develop more resources to meet the needs of our community.

When I joined the NZDSA team in 2004, we had two part-time staff members: Linda te Kaat, our National Administrator and Angela Harper, the editor of the magazine. Over the years I have worked with a number of great team members and our team now consists of four parttime staff members and we contract Dan who is our graphic designer and Coen our editor of CHAT 21.

Chat 21 has also seen a number of evolutions, which was evident when I was looking through archives. It started as a newsletter; then to a coloured A5 photocopied booklet; to the black and white A4 magazine; to the edition with Down Write Brilliant written by people with Down syndrome for people with Down syndrome; to acquiring an ISSN number so that it can be called a journal; to naming the journal CHAT 21 which is an acronym for Communication, Holistic, Advocacy and Taonga; to an online full colour edition.

We also send out a fortnightly Enews and COVID-19 E-Bulletin.

I think you will recognise the “then and now” theme threading through my reflections, so another significant milestone for the organisation was moving from a very manual paper-based system with the Committee doing many different administration and finance tasks, to shifting operations to the staff. This shift meant that the Committee could focus on governance responsibilities and the staff could develop more streamlined processes and develop the infrastructures

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that enabled us to manage the operations of the NZDSA. This infrastructure has facilitated our ability to work remotely, which ensures that we can continue to provide support and information, especially when we are in lockdown.

I have to acknowledge Southern Stars Trust with whom we partnered in 2006 to run our annual telephone campaign. The funding we received from this campaign e n a b l e d t h e N Z DSA to m ove f ro m providing our core services of information, support and advocacy to mobilising the strategic plan, undertaking projects, developing resources, offering our popular Youth Development Camp and a range of workshops, as well as publishing CHAT 21.

So much of the work we have developed in the past 15 years is directly correlated to the funding we have received through this campaign.

Another highlight was organising the very first World Down Syndrome Day event in the world. It was held on the 21st of March 2006 in Palmerston North in the Mayor’s offices at 3pm with 21 guests. In 2007, a staff member, Gwenda, patented T4T, our signature event for World Down Syndrome Day and we also hosted the first National Achievement Awards.

In 2007 His Excellency, the GovernorGeneral, Anand Satyanand accepted our invitation to be the patron of the New Zealand Down Syndrome Association as did Lt Gen The Rt Hon Sir Jerry Mateparae and recently also, Her Excellency Dame Patsy Reddy the NZDSA has appreciated the role in raising awareness of Down syndrome in Aotearoa.

Advocacy is one of the key reasons the NZDSA was established, and in different periods of history, different foci for advocacy have occurred. My first involvement with systemic advocacy involved prenatal screening and over time has included the NZDSA’s review of the prenatal position statement and the NZDSA’s position on termination.

Unfortunately, prenatal screening remains a critical systemic advocacy issue as the screening programme continues to discriminate against people with Down syndrome.

Another visible change for the NZDSA was in 2013 when Dan te Kaat, our graphic designer, designed a new logo and started

designing our new and existing resources.

A more recent highlight for me and I am sure for all our members, is the National Committee’s decision to invest in the development of a new website and marketing so that we are able to deliver our core services on a digital platform and can embrace a range of communication platforms which I am sure you have enjoyed engaging with. I am sure you will join me in thanking Dan te Kaat and Coen Lammers for their work in this area.

I have mentioned many highlights or significant moments, however, they cannot compare to the greatest highlight, which is the people I have met, the people I have worked with and the people I have worked for. People have contributed in so many ways to the development of the NZDSA. People have inspired, challenged, supported, assisted and partnered with the NZDSA to achieve its goals.

I cannot name everyone as there are just too many, but I would like to acknowledge the contribution of those I have worked with or for: • Past and present Presidents: Tania Garret, Neville Strong, Shelley Waters and Kim Porthouse • Committee members: Alison Attwell, Leanne Day, Angela Harper, Anne O’Connor, Kathryn Sadgrove, Willie Robinson, Caryl Earwaker Luthy, Sue Hartley, Tania Grose, Jenny Harkins, Carol Nesdale, Carmen Slater, Anya Bowman, Sara Fraser McKenzie, Gareth Smith, Averill Glew, Gwen Matchitt, Geraldine Whatnell, Angela Hawke, Jan Cairncross, Diane Burnett, Kerry Ryan, Bev Smith • Members of the national team: Linda te Kaat, Angela Harper, Maria Borshevsky, Jessica Harkins, Sharon Sheard, Dan te Kaat, Jess Waters, Coen Lammers, Rose te Kaat, Grace Perry and Jess Scarsbrook, • I am aware that everything the NZDSA has achieved is due to the multitude of contributions of people over the past 40 years that has paved the way for the NZDSA to celebrate its 40th anniversary. So, thank you to everyone for your vision, dedication, passion and determination.

The evolution of the NZDSA logo

By Daniel te Kaat

Previous logo designer Nina Cook, then a fine arts student in Christchurch, took on the re-design as part of her course work.

She says she developed the logo by emphasising the people element, changing the circle into an oval, ‘releasing the characters by adding shadow.

Feedback on the logo at the time was that it looked like a family, but also represented the three chromosomes of Down syndrome. Others even saw it as dead fish or three aliens leaving their UFO—who would have thought!

Approaching the redesign in 2013 meant graphic designer Dan te Kaat had to revisit the old logo, while coming up with something that reflects Down syndrome and the inclusion of people with Down syndrome in the community. It had to represent all age groups, stand out and be suitable for a range of audiences, from families to businesses and disabilityrelated groups.

From the designer: We originally set out simply to add the words “New Zealand Down Syndrome Association” to the old logo as it had never had a logotype attached to the existing icon. After tossing a few ideas around we decided to freshen up the icon,.

It was at this point things started to get interesting… As I started to pull the old icon apart it led us to really question the imagery the old icon evoked. We have all heard the fish, blob and alien references so it was decided I would have a look at a complete redesign to see how it came out.

The brief was to keep the ideas b e h i n d t h e o l d l o g o, to re p re s e n t the ideals of the NZDSA but freshen and modernise it to reflect a modern not-for-profit organisation.

The task was definitely demanding from a professional and also a personal point of view, with the NZDSA being such a large part of my family’s life, I was not taking the responsibility lightly!

In the beginning, five concepts were given to the National Committee: two using modified versions of the old logo and three complete redesigns. There was much deliberation if a rebrand was the way forward for the NZDSA with concerns there may be a loss in brand recognition. We discussed the NZDSA and its current brand, noting a lot of the brand is held internally, with the people of the association providing the back bone and the essence of the brand. With that in mind the final decision was made to move forward with the rebrand giving the NZDSA a new Image.

I often get asked the meaning behind any given logo - this was never really the case with the NZDSA logo - More often people told me what they believe it means. From a medical look touching on an extra chromosome to the idea of the integration of Down syndrome, community, family and friendship.

At this point I won’t tell you what I believe the logo means or the story it tells. I hope every person will look at it and take their own story from it, whatever that may be.

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Here’s to 40 wonderful years of the NZDSA.

Children at Champion Centre on 40-year journey with the NZDSA

By Lauren Porter Clincal Director at the Champion Centre

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Just over 40 years ago, Patricia Champion conducted doctoral research that led to the formation of the Champion Centre.

Patricia offered support and intervention to all Christchurch children born with Down syndrome in 1979.

Her work was based on the understanding that all children need the same things to develop, whether or not they have developmental challenges or disability.

The key to everything is the quality of the relationships the child has with trusted and loving caregivers.

Four decades ago, such a key was either entirely unknown or hotly refuted!

Children born with Down syndrome at that time were still facing institutionalisation and few people held the belief that there was reason for both intervention and celebration.

Nonetheless, Patricia persisted and 14 families agreed to take part in the research.

Through the vagaries of chance — and the way that life weaves people together — I discovered that I knew the family of the last baby Patricia enrolled in her research.

Born at the end of 1978, this baby girl is now a woman of 43. Her big sister – now in her 50s- told me of her strong memory of opening the front door of their home to greet Patricia: “What I remember about Patricia is her delighting in (my sister) and admiring her like we would any other new born. It was a relief to me that an outsider was so accepting of her like us.”

At a time when the birth of a baby with Down syndrome was a reason for sadness, Patricia changed the lives of this family simply by responding to their baby with joy.

Memories are strong for the mum in this family, too: "My paediatrician referred me to Patricia.

Image: The letter that got the Champion Centre started 40 years ago

He said that she wouldn't do my child any good, but it might be therapy for us parents."

Despite sufficient support from the medical community to get the research up and running, belief was not always high.

Yet more than 40 years on, this mother understood the intervention clearly and described it as “working with parents to teach them how to adapt goals so that the child always experienced success, and therefore frequent positive feedback.”

Today, one only must look at Ministry of Education documents or the research on best practice in child development to see that this mother’s memory encapsulates all we now believe to be foundational.

Children – those with Down syndrome and those without – learn best when they are engaged, when learning is meaningful, when an adult is supporting them, and when they are the sweet spot now referred

to as “the zone of proximal development”.

To understand Down syndrome in 2021 now includes fundamental frameworks that were absent 40 years ago.

Of course, our understandings continue to evolve and develop, as does our advocacy and our interventions. Moving forward it can be helpful to hold in mind what we’ve learned from the past. As the big sister in this story summed it up: “It's great to think how the world has changed since then, and that its due to great people like Patricia. Great people who are also ordinary people just doing their thing pursuing what they are in to and doing what they believe. Very cool.”

Here’s to 40 more years of the NZDSA and the children, whānau and centres where those wonderful ordinary people live and work.

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TIMING IS EVER

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Young Wellington woman Katrina Sneath has found work at a unique hotel in the New South Wales Blue Mountains.

Timing is everying. Katrina, 25, had completed two years at the University of Sydney’s uni 2 beyond programme just in time to join the first intake of trainees in Australia’s first social enterprise hotel.

Hotel Etico is a guest hotel in the historic Mount Victoria Manor that runs a work, training and live-in programme for people with intellectual disabilities.

Katrina doesn’t believe that having Down syndrome means she can’t do what her siblings do, and decided she wanted to study overseas. The University of Sydney’s uni 2 beyond programme at the Centre for Disability Studies was the right fit. uni 2 beyond supports people with intellectual disabilities to study courses for interest – called auditing – and take part in university life without enrolling in degree courses. Katrina studied a wide range of courses, from nutrition to creative writing, global challenges and Greek and Roman studies.

“It was an amazing experience,” she says. “Not many people with intellectual disabilities have a chance to audit university subjects and to see what the student life is about. It made me more open to opportunities, especially the advocacy subjects, and also the new things l learned. They gave me new ideas for creating future opportunities and lifetasting.”

And Jan McConnachie, Katrina’s mother, says her daughter is tasting all that Sydney offers. “She whizzes around Sydney using Citymapper.” Citymapper is Sydney’s

transport app. “She has got an enormous amount of confidence in managing public transport on her own in a city this big with a lot of alternative options.”

Before Sydney’s COVID-19 lockdown Katrina found a part-time job in a lawyer’s office, but that ended with the pandemic.

She has also worked for Side by Side Advocacy as a co-researcher on an inclusion project and she goes to gigs with Gig Buddies Sydney.

In November last year, just as Katrina was completing her studies at uni 2 beyond, Hotel Etico opened and Katrina was accepted for the first intake of trainees.

She takes the train from Sydney to the Blue Mountains each week, working three days and staying over in a staff apartment for two nights.

“The people are really amazing to work with. They are like family,” Katrina says.

“They have inspired me to look at the opportunities to work at different hotels too. We can work and learn there for one year.”

The inspiration for Hotel Etico came from northern Italy and Niccolo Vallese, a young man with Down syndrome who made a success of working in a local restaurant.

The hotels now operate world-wide.

Jan accompanied Katrina to Sydney when she started uni and has worked hard to set Katrina up to live as independently as possible. “She’s quite determined she’s not going to come back to New Zealand,” Jan says. “She loves the new experiences, excitement and opportunities of the big city with lots going on.”

Source: IHC

RYTHING

Image: Katrina Sneath spent two years at uni 2 beyond at the University of Sydney

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Image: Colin at his workstation

Emotional farewell for Colin after 30 years at Hirepool

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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.”

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.

Image: Colin & his workmates

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

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New book unlocks artistic potential in people with Down syndrome

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Irina Mamontova has produced an amazing resource to teach children and young adolescents with Down syndrome how to draw.

The Moscow-based artist has now translated Not Down into English to spread her inspiring practice far and wide and has made the book available to download.

Irina has worked with the Downside Up Charitable Fund for over a decade and is the designer for two periodicals about Down syndrome.

For the last 12 years, Irina and her students with Down syndrome have been drawing in the Flowers of Life creative studio.

Not Down captures Irina’s research on how to draw with children and adolescents with Down syndrome.

This well-designed book will be helpful both to parents and to all those who work with special needs children.

Irina is an artist, a photographer and a teacher, an organizer of children drawing exhibitions and celebrations, dedicated to WDSD, as well as the designer of a research magazine for specialists in Down Syndrome called XXI Century as well a bulletin Make a step for parents, published by Downside Up Charity Fund.

In 2009, as a designer, she was preparing for publishing an issue of Down Syndrome XXI Century.

In an article by Sylvia Escamilla about the Mexican Down Art School, she was deeply impressed with paintings by artists with Down syndrome. Bright, interesting, extraordinary people who interpreted the world in their paintings in an original and fresh way.

The article inspired Irina to organize Flowers of Life, an art studio for children and teenagers with Down syndrome, graduates of Downside Up Charity Funda .

In her book, Irina explains how she and her colleagues

at Flowers of Life help unlock the creative potential of people with Down syndrome.

It shows creative processes, step-by-step.

Such know-how will be useful for students and teachers in inclusive schools and further education institutions.

Her practical recommendations for those who work with children with Down syndrome, which have been tested in the classroom, would appeal to child psychologists and charities alike.

Most importantly, the book proves that people with Down syndrome can be creative.

This is done through detailed reports on the creative process, enhanced by photographs of paintings by little artists.

This visually rich material would inspire teachers and parents of children with special needs to organize similar studios in places they live. If only they get to see and read this book.

Even art critics, artists, the museum and art community as well as art lovers would find much to admire in Irina’s book. We believe that her rich, valuable experience should be available worldwide.

This book is a tool that’s ready to be used by thousands of people in many countries.

The Flowers of Life know-how cannot and should not remain the studio’s secret.

They are ready to share it with the international community.

You can download the resource through: https:// disk.yandex.ru/i/pW-K_ tPkvSgg1w

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NEO Notes

What does the NZDSA do?

It celebrates!

By Zandra Vaccarino

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You will have noticed in the previous editions of CHAT 21 that I am responding to the question “What does the NZDSA do”?

In the previous two editions I have shared some of the invisible work the NZDSA does which includes systemic advocacy and securing funding. In this edition I thought I would focus on the more visible work the NZDSA does, which is to celebrate: • • • • •

all people with Down syndrome the contributions of all our volunteers the incredible contributions of our regional groups supporters and partners, and the abilities and accomplishments of people with Down syndrome, volunteers and our whānau.

Our celebrations also include opportunities to develop the connections within our community and raise awareness of Down syndrome in the wider community. The NZDSA celebrations embrace a range of activities including media statements, sharing stories on various communication platforms, marking World Down Syndrome Day on the 21st March, the NZDSA National Achievement Awards, the NZDSA National Volunteer Award, creating digital stories to raise awareness, and of course celebrating World Down Syndrome Month which is marked in October.

This quarter I can report on a number of celebrations which included the National Achievement Awards hosted in July by our patron, Her Excellency, The Right Honourable, Dame Patsy Reddy, GovernorGeneral of New Zealand at Government H o u s e , We l l i n g t o n . T h e N a t i o n a l Achievement Awards were featured in the previous edition of CHAT 21. If you have missed the previous edition of CHAT 21, you can still read it on our website. This occasion was a wonderful celebration and is always an ideal opportunity to generate media statements and to create greater awareness in the community.

T h e d ay a f te r t h e ce l e b ra t i o n s a t Government House, regional group representatives from around the country, the National Committee and the team at National Office met in Wellington for an NZDSA-Regional Day. The NZDSARegional Day included opportunities to

celebrate all the services and supports the regional groups provide for their communities. The Regional Day also included the opportunity for professional development and for the NZDSA and regional groups to discuss the NZDSA’s Strategic Plan and work on shared goals for the future.

This year the NZDSA has had more reason to celebrate as we mark our 40th anniversary. The NZDSA has planned 40th celebrations throughout the year and has hosted different regional events.

Unfortunately, we have also had to postpone some face-to-face celebrations due to lockdown alert levels.

Left: NZDSA turns 40: October 2021 Right: STRIVE Supper Club gathering

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Image: One of the webinars available over lockdown

We haven’t managed to celebrate our 40th anniversary at a national level until now! A month-long celebration started in October with the launch of new resources and the 1st ever NZDSA Virtual Conference which is being hosted during the month of October. The Virtual Conference includes international and local speakers. I hope you managed to join us at the event.

If you missed some events, keep reading your E-news as we will be sharing some recordings with you.

We a l s o wa n t to h e a r a b o u t yo u r celebrations, so remember to send photographs to Coen editor@nzdsa. org.nz with a sentence or two of your special celebrations, sport achievements, birthdays, graduations, achieving goals and enjoying life.

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Lockdown – Online Connections Who would have thought that once again we would be navigating lockdowns? The NZDSA is very aware that lockdowns are extremely challenging so to support our community the NZDSA has embraced technology to offer online Lockdown S o c i a l G at h e r i n g s a n d i n fo r m at i o n sessions. The information events included a session on Speech and Language, a Vaccine series, a Wellbeing, Emotional Regulation session, and a session looking at Brain and Gut Health.

Some of these events were recorded and you can access these on our website.

COVID-19 The NZDSA continues to advocate for our members at the Ministry of Health COVID-19 engagement meetings. The NZDSA is also updating information on COVID-19 and the vaccination programme on our website and has also introduced a fortnightly COVID-19 E-Bulletin.

If you still have questions about the vaccine, please view the two Vaccine presentations with Dr Rosemary Marks, Dr Marguerite Dalton and other guests: Nurse Practitioner Geraldine Whatnell, Mental Health & Addiction, MidCentral DHB; Health Professional and Committee Member Bev Smith; and Alexia Black Consultant to CCDHB. These presentations are available on our website.

Hei konei rā Zandra

New Zealander Bridget Snedden new President of Down Syndrome International Bridget Snedden from Auckland was recognised for her years of advocacy work around the world when she was elected as the new President of Down Syndrome International (DSi) at their 2021 Annual General Meeting.

“I am very humbled and proud to lead the DSi Board of Trustees along with Vice-President Rhonda Faragher from Queensland,” says Bridget who has been a Trustee of DSi since 2008 and in recent years filled the role of Vice-President.

Bridget has been heavily involved in the Down syndrome movement at a local, national and international level since her son Alex was born in 1988.

After first joining her local Auckland association for support, she found herself on the Auckland committee a few years later.

At a meeting at the IHC office in Wellington, she met Cindy Johns where they hatched a plan and approached JB Munro to support them in rebuilding the New Zealand Down Syndrome Association, which at that stage was in abeyance and needed a new impulse.

The NZDSA was soon re-established and from 1993 until 2000, Bridget acted as the Executive Officer of the NZDSA. The new DSi President lives by the motto “You breathe, You belong” and is driven by her commitment to social justice.

“I believe that every New Zealander has the same right to live and enjoy life like their neighbours and friends,” says Bridget, who has had significant experience across the disability sector in both governance and delivery.

Bridget says she is proud to have been able to contribute to the change that many families of disabled children have made, so that their children can live a good life.

NZDSA National Executive Officer Zandra Vaccarino says Bridget’s appointment is a wonderful recognition for the work she has done for the Down syndrome community in New Zealand and abroad.

“Bridget has been a driving force behind the NZDSA for many years, and the wider Down syndrome community in New Zealand and abroad, so we can all feel very proud to have one of our own leading the amazing work DSi does all over the world to improve the lives of people with Down syndrome,” says Vaccarino.

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Continuous learning creates a surprising discoveries

By Helen Geddes

Image: Kevin Geddes at a conference in Sibu, Sarawak, Malaysia with Dr Toh Tec Hock & his wife, Helen & Trevor Geddes

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In recent years we have had a number of conversations with parents with a child with Down syndrome who had done reasonably well through their years of schooling, but when they became a young adult and left school, began to lose language.

We have had a different experience.

When my husband Trevor and I embarked on finding a pathway to teach our son Kevin language skills we had no idea where this would take us.

The hurdle of his dual diagnosis of both Down syndrome and Autism meant that acquiring language has been difficult for him. He is now 29 years old, so we have been on this journey for many years.

When he was little, we looked for software tools that would enable us to teach him language skills and couldn’t find what we were looking for. Our solution was to create them ourselves.

Our research suggested he would be a visual learner and we could see the potential of software for teaching language skills.

Trevor has a scientific background with expertise in software development and I am a trained teacher.

We created software that would enable Kevin to learn to read, to write and to verbally communicate which then became an integral part of his programme.

We chose schools for him where staff were happy to work in partnership with us so that there was continuity in his learning.

Such continuity is crucial, yet for students like Kevin, is often sadly lacking!

Because of his very high needs there would have been little progress without this long-term strategy.

His reading skills slowly developed, and he gained confidence.

Though he had little verbal skills, his ability to concentrate kept improving and he enjoyed success as a learner.

When he was younger, we limited his use of computers to his literacy programme so that he had the benefit of it being a learning tool.

We have observed that too much time on technology can work against this, so we were very careful with Kevin.

After he left school, we wanted him involved in a tertiary education setting to improve his language skills, but no doors opened for that.

Our solution was to maintain a daily literacy component with the assistance of his support workers.

Reading has been a regular part of his life and a favourite pastime, and we have used the software to generate stories of high interest for him over the years.

It has provided a pathway to enjoy memories and share them with others.

These stories use video and pictures, which he finds highly motivating. The software has kept evolving and he has been using it now for over two decades.

It has surprised and delighted us that he is making his best gains well into his twenties.

His reading continues to improve, his speech is becoming clearer, and he is very motivated to communicate.

He is trying hard to speak more clearly a n d s o we h ave u s e d s o m e o f h i s Individualised Funding to employ a great speech therapist.

About 18 months ago I realised for the first time I had some idea what he was thinking because he was telling me!

He began to seek us out to converse, even though in a limited way.

His skills in reading are the pathway for his gains verbally.

We’ve made the software available to others and offer training and support.

Our journey has now taken us to Malaysia, Bangladesh, Hong Kong, China, and Myanmar with versions in multiple languages.

A Te R e o v e r s i o n i s c u r r e n t l y i n development.

In 2019, Kevin accompanied us to an Early Intervention conference in Malaysia where we were presenting.

He confidently stood up in front of 800 delegates and read a simple story about his life, which is remarkable given he would have been very stressed if in a large, crowded auditorium as a child. He thrived on this cross-cultural experience.

The pandemic has prevented another s p e a k i n g e n g a g e m e n t fo r Kev i n i n Malaysia, this time funding coming from the conference organisers to cover his expenses. Hopefully this will go ahead next year.

Now we realise our strategy for longterm language learning has been the key to Kevin’s success. Most importantly we needed to continue this passed his formal schooling, as this is where his biggest gains have come.

This has been a delightful and surprising discovery. We are so glad we did this!

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The Attitude Awards finalists

Many familiar faces in the Down syndrome community have been named as finalists in this year’s Attitude Awards to recognise their amazing achievements.

The Down syndrome community has been well presented in five different categories and the winners will be announced at a gala dinner on December 1.

The NZDSA congratulates all the nominees and wishes them all the best for the awards ceremony.

The nominees from the Down syndrome community are: Attitude Enterprise Award Bradley Lewis from Invercargil runs his own business, K9 Munchies, making dog treats. Selling online and locally in Invercargill, Bradley is looking to expand his brand nationally to continue the journey to his own financial freedom.

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Attitude Youth Award Luka Willems is on his way to becoming an influencer in his community, to inspire and encourage others. He’s a YouTuber with some of his work being used by local and international Down Syndrome Associations and he represents Canterbury as a Para swimmer.

Attitude Creative Award Carlos Biggemann is an internationally recognised photographer, who also writes poetry. He’s collaborated with 14 poets to create a book featuring his photography.

Lily Harper’s big passion is acting, recently taking on the lead role in “Up Town Girl”, performing in Palmerston North and Wellington. The show won three awards, with Lily taking the “emerging actor in a play” award.

Attitude Sporting Endeavour Award Alfie Linn is a popular competitor in the Table Tennis community, and has represented New Zealand at international level. He loves feeling part of a team, is a great sportsman and his attitude to others, no matter who they are, is fair and just and he loves competing at all levels.

Attitude Community Champion Award Sarah Ferens as a teenager started a weekly social group for young people with Down syndrome, to help her sister Emma make friends. Using her disability knowledge, she created ‘A Family Collective’ which supports families and their young people to work and live independently.

Image 1: Bradley Lewis Image 2: Luka Willems Image 3: Carlos Biggemann Image 4: Lily Harper Image 5: Alfie Linn Image 6: Sarah Ferens

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MONEY GAME MAKES PAYING BILLS FUN!

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‘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 InG ame 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.

Image: Tasman’s Great Taste Trail from Motueka to Kaiteriteri

Cycling the Tasman Great Taste Trail

By Kaye Young

E a c h ye a r we e n d e avo u r t o c yc l e somewhere in New Zealand with our son James, who is on the back of the tandem.

This year we cycled the Tasman Great Taste Trail.

He loves it and no matter how big the day or how long the number of kilometres cycled, he never complains!

We aim to do about 50km a day which leaves time for a leisurely lunch and arriving at our destination early. This time however we stayed at a motel in Motueka and used one of the local cycling companies to drop us off and pick us up.

We did not do the full trail as we avoided the sections which involve cycling on a busy road.

Day 1 We were dropped off at the Nelson iSite and cycled along various city cycle trails to Richmond and from there alongside the estuary.

Then on through Rabbit Island and caught the Māpua Ferry at 1pm to take us across the Waimea Inlet. We had lunch in Māpua at Jellyfish Café followed by a real fruit ice cream, then continued onto Motueka.

The afternoon was a bit of a slog when we

cycled uphill to the Tasman Lookout but James loved coming downhill on the dirt, rutted road. We got the thumbs up!

Day 2 F ro m M o t u e k a we c yc l e d 1 8 k m to Kaiteriteri through Riwaka past Tapu Beach then onto an easy Mountain Bike Track through bush and zig zagged down into Kaiteriteri.

Roger negotiated the zig zags with aplomb which is no mean feat on a tandem and James loved it!

Lunch at the Kai Restaurant on the beach and returned home the same way.

Day 3 What a big day!

We were dropped off at Tapawera and cycled to Kohatu and onto Spooners Tunnel. The tunnel is the highlight and it is 1.3km long and cold, so good lights are a help.

James was not fazed by it and part of it we walked but all of us loved the experience.

It was downhill from there to Bellgrove and we had a snack by a Railway Windmill, one of the last 2 left in New Zealand.

Then through the bush in the Wai-iti Domain and onto Wakefield and lunch.

From there onto Richmond, it was a bit of a slog with a headwind and very hot.

This we could have left out or done on another day.

It was a wonderful trip and a great way to see the Nelson region. We cycled 150km over the three days and James loved it all the way. Now for the next trip……

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IHC has launched an exciting new digital friendship service

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IHC has launched an exciting new service that will be helpful to many families with Down syndrome, especially in the more remote parts of the country.

IHC has created a new volunteering role called, i-Volunteer, which is an extension of its existing volunteer friendships and our Volunteer Programme where we connect people to form friendships and engage in their communities. i-Volunteer is a digital version which links volunteers with people with intellectual disabilities, but the connection is online and by phone.

IHC has also extended the service to include family carers of someone with an intellectual disability, and that friendship is online and by phone as well.

The beauty of this new online volunteer role is that it allows IHC to target regions where it does not currently operate because they don’t have a Volunteer Coordinator on the ground.

The new service allows IHC to also target remote areas such as farming communities or the West Coast of the South Island. i-Volunteer is all about shared interests and doing what each person enjoys and wants to do as part of their friendship together.

Things that volunteers and their friends have talked about doing together are

• Trying a new recipe and cooking it together over zoom • Exercising and watching yoga YouTube videos together • Playing multi-player online games such as animal crossing or minecraft • Knit or craft while on zoom or skype • ‘Visit’ zoos (for example logging onto the live webcam on the San Diego zoo website); or • Just chatting over the phone.

The initial interest among volunteers has been encouraging and has already resulted in several new i-Volunteers undergoing our orientation and training process in readiness for a friendship match.

Their interests range from travel, sports, l e a r n i n g S p a n i s h , to v i d e o g a m e s , movies, creative writing and cooking and photography.

Their individual skills and experiences indicate they will be a committed and valued friend to a person with intellectual disability, or to a family carer of a person with intellectual disability.

IHC is looking for referrals from people who would like an online volunteer friend, so any families that might be interested please contact Belinda Donaldson at IHC 0800 442 311 or Belinda.Donaldson@ihc.org.nz

Holiday fun in the Wairarapa

By Bridie Allen

Wet, cold wintery weather meant that it was an indoor catch for the Wairarapa Down Syndrome Community for the July school holidays.

We met at Masterbowl in Masterton and put our bowling skills to test! Of course it was really all about fun.

The claps, cheers and high fives showed great support of each other.

We shared some food to keep our energy up and everyone enjoyed themselves.

Thank you to Masterbowl for providing us with a discounted rate and Wellington Down Syndrome Association for subsidising the event.

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IHC Resources

Here are some of the new books at the IHC Library Just a reminder that the library is constantly adding to their eBook and streaming video collections. If you need help accessing these please let IHC know.

Please contact the library team (Phil, Ros, Ann and Michael) on 0800 442 442, email librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha.co.nz/ Yo u c a n w a t c h t h e l i b r a r y v i d e o a t h t t p s : // w w w . y o u t u b e . c o m / watch?v=AunmBYTIZTM

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Unexpected: parenting, prenatal testing, and Down syndrome by Alison Piepmeier with George Estreich and Rachel Adams Summary: ‘ U n ex p e c te d ’ c a l l s our attention to issues relating to reproductive rights and abortion and considers them in ways far more complex and nuanced than usually is the case. Unequivocally pro-choice, Piepmeier creates a site of resistance to dominant and dehumanizing cultural stereotypes regarding the supposed tragedy of having a disabled child.

Offering universal insights that go beyond the special and inclusive, she grapples with key questions such as what it means to be both a person and a citizen, and she presents a compelling vision of a just society for citizens of all abilities.” - Chris Gabbard author of ‘A Life Beyond Reason: a Father’s Memoir.’ Book Jacket Based on interviews with parents of children with Down syndrome, as well as women who terminated their pregnancies because their fetus was identified as having the condition, Unexpected paints an intimate, nuanced picture of reproductive choice in today’s world. Piepmeier takes us inside her own daughter’s life, showing how Down syndrome is misunderstood, stigmatized, and condemned, particularly in the context of prenatal testing.

Life skills activities for secondary students with special needs by Darlene Mannix This book offers teachers and parents a unique collection of more than 200 worksheets to help adolescents with special needs build the life skills they need to achieve independence and succeed in everyday life. The book provides 22 complete teaching units focusing on basic life skills such as succeeding at school, using the Internet safely, handling money, getting and keeping a job, and much more. The book contains 90 reproducible worksheets for teaching students how to apply these life skills to real-life situations.

Mannix is the best-selling author of Social Skills Activities for Special Children, Life Skills Activities for Special Children, and Writing Skills Activities for Special Children Coping with change

By Honor Head Young children can find the world we l i ve i n d a u n t i n g a n d a b i t s c a r y.

When something out of our routine happens, we can lose that feeling of safety and being in control.

Learn how to develop the skills you need to cope with changes that are big and scary, such as changing schools or moving to a new town. This book will help young readers to develop a flexible mindset and to explore feelings around coping with change in a gentle and supportive way.

The Bounce Back series is suitable for readers aged 6+

How do I feel?

By Rebekah Lipp Join Aroha and her friends as they share how different emotions might feel in the body and how each emotion might be helpful. This emotions dictionary is all about helping children find the words for how they truly feel. Learning to recognise and label our emotions correctly is such an important skill for life.

Giving our children this language helps to build emotional literacy. It is a gift to give children the tools to know how to recognise what they truly feel and that it is okay to feel all emotions. When they know that no emotion is ‘good’ or ‘bad’ and that all emotions provide messages, then it takes away any attachment to that emotion being part of who they are. It can also help us find ways to help them empower themselves with tools to feel better. Use this book to start conversations about different emotions. This book can be used with children from 5 years of age up to 100+ as everyone might get something from the book.

Let’s cook!

By E l i z a b e t h D. Riesz, Anne Kissack This book helps you prepare your own meals with success!

Learn how to cook simple and complete meals - healthy meals - with recipes using all the MyPlate food groups. Gain confidence in the kitchen and build self-worth. Designed by and for adults with intellectual disabilities, Let’s Cook! promotes and reinforces life skills for independent living.

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Contact Directory.

Kim Porthouse President 0800 693 724 president@nzdsa.org.nz

Gwen Matchitt

NZDSA Commitee

Vice President Zone 2 Representative Waikato, BOP & Taranaki 0800 693 724 zone2@nzdsa.org.nz

Angelique van der Velden

Bev Smith

Diane Burnett

Zone 1 Representative Northland 0800 693 724 northland@nzdsa.org.nz

Zone 1 Representative Auckland 0800 693 724 auckland@nzdsa.org.nz

Zone 3 Representative Whanganui, Manawatū, Gisborne & Hawkes Bay 0800 693 724 zone3@nzdsa.org.nz

Bridie Allen Zone 4 Representative Wellington & Wairarapa 0800 693 724 zone4@nzdsa.org.nz

Averill Glew Zone 6 Representative All areas below Ashburton 0800 693 724 zone6@nzdsa.org.nz

Shelley Waters

Zandra Vaccarino

Rose te Kaat

Grace Perry

National Executive Officer 0800 693 724 neo@nzdsa.org.nz

National Administrator 0800 693 724 na@nzdsa.org.nz

Administration Assistant 0800 693 724 grace@nzdsa.org.nz

Daniel te Kaat

Jess Waters

Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz

Social Media & Information Officer hello@nzdsa.org.nz

Paula Beguely

Pauline Marshall

Sandra Slattery

Auckland Community Liaison Officer 0800 693 724 clo@adsa.org.nz

Canterbury Community Liaison Officer 0800 693 724 cdsainc@gmail.com

Taranaki Community Liaison Officer 0800 693 724 taranakidownsyndrome@gmail.com

Zone 5 Representative Ashburton & all areas above 0800 693 724 zone5@nzdsa.org.nz

Treasurer treasurer@nzdsa.org.nz

NZDSA Staff Coen Lammers Communications Advisor & CHAT21 Editor 027 730 239 editor@nzdsa.org.nz

Regional Liaison Officers

NZDSA Membership Membership is now done online. For all details please go to www.nzdsa.org.nz or for any queries please ring 0800 693 724. If you have not received an email to update your membership online please call the number above.

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Donations The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running.

If you can make a donation big or small, please go to www.nzdsa.org.nz or ring 0800 693 724.

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. facebook.com/NZDSA Follow us on Instagram to see what our communities are up to at nz_down_syndrome Check out the NZDSA’s website at nzdsa.org.nz

NZDSA NOTICES The NZDSA have curated information on COVID-19 on our website The NZDSA attends MoH disability engagement meetings so please contact Zandra neo@nzdsa.org.nz if you have experienced difficulties in accessing vaccines.

The NZDSA will be sharing the latest information available from the Ministry of Health and resources in our COVID-19-EBulletin.

Rose Award I would like to encourage you to nominate a deserving individual or organisation for the next edition of CHAT 21.

The Rose Award provides the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email Rose at na@ n zd s a .o rg . n z yo u r n o m i n at i o n s fo r an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”. We will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Websites that have the latest and best sources of information • https://covid19.govt.nz/ • https://www.health.govt.nz/ourwork/diseases-and-conditions/ covid-19-novel-coronavirus/ covid-19-information-specificaudiences/covid-19-informationdisabled-people-and-theirfamily-and-whanau

Numicon Kits Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits.

Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon, the website is numicon.co.nz/ If you would like to borrow a kit please contact Rose te Kaat for more information at na@nzdsa.org.nz or on 0800 693 725.

Thanks Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year: • Lottery Grants Board • Bluesky Community trust • COGS: Christchurch • COGS: Auckland City • COGS: Coastal Otago • COGS: Manukau • COGS: Whangarei • COGS: Waitakere City • Holsworth Charitable Trust • Eastern & Central Community Trust

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Me & My Pet.

Top left: William Young & Charlie Top centre left: Quinn Hawthorn & Apollo Top centre right: Alex Snedden Top right: Jonty Bailey hugging Maggie Centre left: Kelly & his Bear Centre: Alex Mulholland & Pip Centre right: Chevey Mcintosh Bottom left: Sadie Shanley & Blue Bottom centre left: Emily Franklyn & Toby Bottom centre right: Luke Simons Bottom right: CJ White & an alpaca

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