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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Several players with Down syndrome recently featured in New Zealand’s first fully disabled rugby team in Christchurch.

The team is called Polar Bears and is part of High Schools Old Boys’ and an international organisation called Tri Trust Rugby.

The team has 20 players with intellectual and/or physical disabilities and are aged between 12 and 40.

After months of training, the players were buzzing to take the field, along with ‘enablers’ who helped facilitate the game to get everyone involved.

The team’s ultimate goal is to have other teams to play against domestically, and one day internationally.

Jolt Dance in Christchurch has teamed up with Belmont Productions to create the short film “The Call Me Sam” to offer a different perspective on disability, focusing on the individual rather than the diagnosis.  

The short film looks at the life of Sam Stevens, a Jolt dancer with Down syndrome. 

The film grew out of a performance created by Jolt Youth in 2017 called “I am Sam which was created in response to new pre-natal testing for Down Syndrome. In countries like Iceland, this testing has resulted in 100% abortion rates for babies with Down Syndrome. 

“It is wonderful people can have choice, but the problem is the culture which is still really negative about disability,” says Lyn Cotton, the Jolt artistic director. 

“Through Sam’s life we were trying to ask those really big questions like ‘what does it mean to human?” 

The original show “I am Sam used dance, theatre and film, to portray who Sam is _from his birth and early life to the present day. Within that story we see Sam as an individual, not just as a person with Down syndrome. 

The film They Call Me Sam uses dance scenes and rehearsals from that original production, as well as behind the scenes footage and interviews with Sam’s parents, other parents and performers. 

“These dancers come through a society that has very low expectations, so we have to fight that,” says Cotton, who had hoped to first show the film in London this May. 

Jolt Dance had been invited as special guests to the 40th anniversary of Amici Dance, one of the longest running inclusive dance companies, but due to the Covid 19 virus, these celebrations have been delayed. Jolt had fundraised and crowd sourced over $10,000 to take their dancers to England and Cotton says those funds will be held until a new date for the Amici event is announced. 

In New Zealand, the film will be distributed to medical people like radiographers, midwives, nurses and doctors, to educators and trainee teachers to raise expectations, to schools and to the disability sector as a celebration of strength and being different. 

The experiences of our parents and other people within New Zealand to a Down Syndrome diagnosis continues to be negative,” says Cotton. “It focuseon all the problems that may occur. It is a culture of fear instead of expectation. It is also a culture that sees the disability as the most important factor in determining who a person is.  

“We want this film to offer another side to the story. Sam’s life is one of purpose and love,” says Cotton. 

Sam’s father Tom features heavily in the film, but unfortunately passed away recently before he could see the end product.  

In the film he points out that most of us are stressed and can only see the problems ahead of us. “But not to one of these kids. Perhaps we should be more like them,” said Tom. 

The STRIVE self-advocacy team had another busy year and even the  lockdown could not stop their work.

STRIVE is a team of people with Down Syndrome who are a members advisory and leadership group who advise and support the New Zealand Down Syndrome Association board, and are ambassadors and advocates for people with Down Syndrome.

Judging by the STRIVE report to the AGM recently, the STRIVE team has developed its skills and influence significantly during 2019-2020.

The team regularly meets for Funshop, which are workshops with different topics, where guest speakers share their expertise with the young ambassadors.

The past year, the meetings covered Research, Advocacy, Writing Reports, Tips for Public Speaking and developing a Succession Plan.

This final subject is particularly important as some of the STRIVE team have been in their role for several years, and may want a change, while it is also important to get new people involved with fresh energy and ideas.

Once Covid 19 started affecting our day to day lives and New Zealand went into lockdown, the STRIVE team started using Zoom meetings.

The group got together on eight occasions between April and June to share their Covid 19 experiences and continue their other work.

Aside from sharing ideas with each other, the group has been very active in the wider community on behalf of the NZDSA.

Andrew Oswin attended the Disability Consumer Consortium in Wellington, Edward Borkin presented to Auckland Timber Industry as well as the Auckland Success in Schools workshops, Erin Smith was a Support Buddy on the Youth Development Camp and Andrew presented at a meeting of Down Syndrome Australia.

The group worked with the Health And Disability Commission on the script for digital resources to help people with disabilities, in which Duncan Armstrong featured as the lead actor.

On the international stage, STRIVE was part of the a feedback group for the Down Syndrome International research on Covid 19, as well being part of a disabled person-led monitoring programme  in Health and Wellbeing by the Donald Beasley Institute.

The STRIVE members have made huge progress as a group but are also proud of the successes they have enjoyed individually.

“On the 13th October 2020 I received and Achievement Award for the outstanding artistic achievement from Arts Access Aotearoa,” said Duncan Armstrong.

“I am taking up a leadership role in the kapa haka group in Invercargill and will be performing alongside other people with Down syndrome from the Invercargill Down Syndrome Group,” said Alexandra Hewitt.

Edward Borkin said will be going flatting which is a goal he has had before he even joined STRIVE, while Caroline Quick is a member of the EGL regional leadership group in Christchurch as one of three disabled representatives.

Caroline is also a member of the Disability Advisory Group for the Christchurch City Council, for which she is paid  a meeting fee.

In the far north,  Erin Smith is a youth leader in the Great Mates Social group.

“I am still a member of the Northlands DSA committee and I continue to enjoy my dance classes.  I have done training workshops at work and I am helping with the induction training at work and doing meet and greets,” says Erin.

Andrew Oswin said he really enjoys being a self-advocate and a member of STRIVE.

“I am happy and privileged and to have made a commitment of service to the Down syndrome community and country of New Zealand.”

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

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

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

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

 

By John Pike
Where do you work?
Right here at Slaughterhaus – the graphic design company where CHAT 21 is produced.

John on cleaning duties at Lighthouse Brewery

How long have you worked here?
11 months.
How many hours each week?
6 hours.
What jobs do you do at your work?
I do the cleaning in the design studio and in Lighthouse Brewery next door.

John with his boss Dan and colleague Taylor.

How does it make you feel that you have a job?

It makes me feel good.

What do you like the most about your work?
Having a beer at Lighthouse Brewery after work on Friday and getting paid.
What don’t you really like about your work?
Cleaning the floor.
Do you have any other paid or volunteer jobs as well?
I help in the garden at Hohepa.
What would be your dream job?
Beer taster.

Some people can’t wear a face mask or covering because of a disability.

The NZDSA have designed these cards to help you in public situations.

The first side of the card is always the same and some people will be happy using it on its own.

Show it to quickly explain that you have a legal reasonable excuse not to wear a face mask.

If you want a non-verbal way to explain more you can double side your card with one of the extra messages. These can be printed or kept on your phone as photos.

YOU CAN PRINT THEM ALL OFF HERE.

 

By Coen Lammers  

Actors with Down syndrome are becoming a hot commodity with three young female actors starring in two movies and a play in recent months. 

Actors with Down syndrome are becoming a more regular feature on television and in movies, including Coronation Street, Shortland Street, and of course the current box office success Peanut Butter Falcon. 

In New Zealand, Libby Hunsdale from Whanganui has been filming the movie Poppy at the Kapiti Coast, Lily Harper filled the lead role in the theatre production Up Down Girl, while Amber Ranson features in the short film Peninisula which was planned to be featured at film festivals overseas. 

Like the Hollywood blockbuster Peanut Butter Falcon, the New Zealand productions mostly centre around life with Down syndrome and the hurdles other people are putting up to stop people with Down syndrome to chase their own dreams. 

Libby Hunsdale on the set of Poppy with Sebastian Hunter.

Libby Hunsdale was picked for the title role of Poppy after extensive casting by writer and director Linda Niccol. 

Niccol said that the 18-year-old was “a real find”.  “She embodies the spirit of Poppy. She is a true performer.” 

Finding the right actress for the role was challenging because the actor had to be able to drive a car.  

Poppy is a New Zealand film about a young woman with Down syndrome who wants to become a motor mechanicstarting with the apprenticeship that was promised her by her late father.  But Dave, her super-protective brother, who has reluctantly taken over the family garage is far from encouraging.  

It is not until she teams up with a former school friend who needs his car fixed in time enter the local burnout competition that her plans progress. 

On the film set, Libby is supported by Sydney-based New Zealander Ari Boyland and another newcomer, Sebastian Hunter.  

Producer Robin Laing said that it had been a steep learning curve for Libby who hapreviously acted in school productions. “But she has taken on the challenge with great courage and enthusiasm. 

In an interview with the New Zealand Herald, Libby said that she could relate to Poppy because she is ambitious and wants a career. “And I do too.” 

 Poppy doesn’t care about what people think of her and the fact she has Down syndrome. I really relate to Poppy. We could be sisters.” 

The film was shot on the Kapiti Coast and is expected to be released in October/November.  

The production received funding from the Film Commission’s 125 Fund, in commemoration of women’s suffrage in New Zealand, from TVNZ which will screen the film on prime-time television, as well as several other philanthropic supporters. 

Amber Randon on the set of Peninsula.

Another actress to soon feature at movie theatres in New Zealand is Amber Randon from Rakaia, south of Christchurch, who filled the lead role in the short film Peninsula. 

The short-film was written by Fiona McKenzie and filmed in Banks Peninsula last year, and was set to feature at overseas film festivals this year before it will be released in New Zealand in spring. 

McKenzie had worked with Amber in acting classes and said she had written the story with Amber in mind. 

“​Amber’s a strong performer and a strong character. I knew she was a strong enough person to enter a film set without blanching,” McKenzie told Stuff. 

“Also, when people see Amber in this film they’ll think it’s a film about Down syndrome, which it’s not. I am so over these things having to be about disability just because people involved are disabled. Can’t we move on?” 

Amber’s boisterous persona and sense of humour lit up the movie set and she said the film was “a piece of cake”. 

“In one scene my character had to be dancing, so the crew put on Thunderstruck by AC/DC – one of my favourites. I busted the moves out and then off camera the whole crew was dancing with me.” 

Lily Harper in full flight.

Another actor to steal the heart of her colleagues and the audience was Palmerston North’s Lily Harper who received rave reviews for her lead role in the stage play Up Down Girl. 

The play was originally written as Up Down Boy by UK-director Sue Shields, but adapted for New Zealand by Nathan Mudge who had worked with Lily on other projects. 

The play focuses on the main character Mattie and her interactions with her mother who is played by Trudy Pearson, as they are trying to prepare for Mattie to go to college. 

The reviewer for Stuff said that Pearson carried most of the dialogue but that Lily ”stole the spotlight”. 

Lily is a born performer and has already presented for Attitude TV and also features in the World Down Syndrome Day video message.  

Up Down Girl however was her first stage play, but drawing on her own experiences as a person with Down syndrome, Lily nailed the performance and according to the reviewer there was not a dry eye in the house. 

 

The New Zealand Down syndrome community is urging the Government to ignore the recommendations in the recent Health and Disability Sector Review.

“New Zealand has made terrific progress to enhance the quality of life for people with Down syndrome and other disabilities and these recommendations which place disability under the health umbrella would take us back generations where disability was seen as a disease,” says Kim Porthouse, president of the New Zealand Down syndrome Association (NZDSA).

The NZDSA has joined the chorus of outraged voices from inside and outside the disability sector who are concerned about the key recommendation to make disability support the responsibility of district health boards.

“Disability cannot be treated as a health issue, but as a condition that affects every part of someone’s life,” says Porthouse.

NZDSA President Kim Porthouse

“Good health is only one part of creating well-being, but so are education, employment, financial independence, strong community and getting access to every aspect of society. That is no different from any other person.”

To achieve a meaningful life, disabled people require support from multiple agencies, including the ministries of Health, Education and Social Development.

“The review makes all the right noises, but if the responsibility is given to DHBs, we fear the delivery will be too fragmented, inconsistent and too health focused.”

Porthouse points out that the Government has done great work with the sector on a System Transformation to give people with disabilities more decision-making and create better lives, “so these recommendations seem a backwards step”.

“The biggest failing is that people with disabilities were not consulted at all, and that is very apparent in the report.”

Down syndrome self-advocate Caroline Quick says disabled people have been excludes from this review.

Caroline Quick is member of the NZDSA’s self-advocacy leadership group STRIVE and is concerned that the review is not available in an easy read format.

“This means that many disabled people will not be able to read what impact the report will have on their lives, will not be able to respond to the proposals and are excluded from participation,“ says Quick.

Porthouse says that the review recognises the importance of  Māori having their own Authority, but fails to pay the same respect to people with disabilities who make up 24% of the population.

“We strongly urge the Government to set up a separate Disability Authority that represents all sections of the disability sector.”

She says a Disability Authority would be a natural progression of the System Transformation pilot program which, with the inclusion of people with disabilities, their whānau and service providers, has already created high-level policy design and implementation.

“That program shows that strong collaboration between the disability sector and Government has enabled the implementation of the Enabling Good Lives principles for thousands of New Zealand’s with a disability,” says Porthouse.

“In 2020 people with disabilities are dynamic and want to create independent and meaningful lives and be involved in making the decisions that impact their lives.

“However, by burying disability services within DHBs without adequate inclusion of disabled people on governing boards, this review instead upholds the archaic view of disability being an illness and the disabled being incapable,” says Porthouse.

“This will leave the disabled wilting in unfulfilled lives, unable to reach their potential. I’m sure this is not where a progressive New Zealand wants to be.”