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.”

We Decide.

That is the message people with Down syndrome want New Zealanders to hear loud and clear.

Far too often people with Down syndrome have their decisions made for them, even when they are very capable of making their own choices.

In many cases they are not consulted over the hundreds of small decisions made each day or even the big, life-changing decisions.

“Those decisions make us who we are, but the reality for many people with Down syndrome is that other people are making small as well as significant decisions for them,” Zandra Vaccarino, National Executive Officer of the New Zealand Down Syndrome Association (NZDSA).

Imagine if someone decided when you get up, what you eat, where you go to school, what you do with your money, who your friends are and even the romances you have. For most of us that would be impossible to imagine but for many people with Down syndrome this is their daily reality.

“Often with best intentions these decisions are made by others, but this year we want to remind all of New Zealand to support people with Down syndrome to make their own decisions,” says Vaccarino.

Saturday, March 21 is World Down Syndrome Day (WDSD) and the NZDSA has launched a special #WeDecide video message from its own members to explain how important it is to make their own choices.

In the clip, Lily talks about becoming an actress, Rachel and Vincenzo talk about getting married, Abigail talks about her career in media while Alec and Jessica proudly explain how they bought a house.

Disability Rights Commissioner Paula Tesoriero highlights that 34.9 per cent of people with Down syndrome are not in education, training or employment and asks New Zealanders to consider how their actions can help change those statistics.

“A child deserves the right to decide what a good life looks like, just like all of us,” says the commissioner.

The #WeDecide video is one of thousands of initiatives and special events around New Zealand and around the world to raise awareness for Down syndrome and to promote the global “We Decide” message.

In New Zealand, local groups have organised gatherings in their own community, but unfortunately some had to be cancelled because of Covid-19.

Hundreds of schools around the country have also embraced the “Odd Socks” campaign in which students wear non-matching socks to demonstrate that we are all different and to fundraise for their local Down syndrome community.

“These events are growing every year and this shows there is an increasing involvement by local schools and communities,” says Vaccarino.

“And of course, World Down Syndrome Day is a special day for our families and whānau to get together, connect and celebrate the amazing feats our people with Down syndrome have achieved.”

 

You can download the video here

 

 

By Andrew Oswin

I attended the Unforgetaball 2019 at the Hornby Working Men’s Club.

It is for families and friends of people with intellectual disabilities. It is about networking with other families and friends, having fun, dancing, singing, and having fun.

Everyone all got dressed up all in their finery and had many photo opportunities.

We welcomed back a band called, ‘Girl From Mars’, who once again played and sang for us at the ball.

I had many dances with a number of lovely ladies and I got to dance to I Want To Break Free, Updown Funky Monkey, Tonight Is Going To Be A Good Night and one of my favourite songs Mamma Mia.

A light supper got provided and the caterers brought the food out to the tables so that everyone could help themselves.

I would like to take this opportunity to thank the organisers Linda Te Kaat and Tania Grose for organising the Unforgetaball once again, which is one of the highlights for the year, as well as the decorators and photographers, the Hornby Working Men’s Club Sports Hall Staff for hiring the venue, the band Girl From Mars and a very special thank to everyone who attended.

I really enjoyed it!

During this year’s World Down Syndrome Day, the New Zealand Down Syndrome Association launched a new awareness video that celebrates diversity at a special screening in Palmerston North.

In ‘Dear Health Professionals’ 14 self-advocates from the Down syndrome community throughout New Zealand invite and challenge Health Professionals to join them in sharing what they bring to the community.

These self-advocates include Abigail, who has just secured employment after completing a certificate at Unitec, Edward who has experienced “a few health challenges,” which hasn’t stopped him from winning a gold medal for New Zealand in the Special Olympics, and Alex who is fluent in Te reo Māori and teaches kapa haka in the community.

Zandra Vaccarino (National Executive Officer, NZDSA) explains why the NZDSA has targeted the health professional in this video.

“Health and Allied Health professionals have a crucial role to play in correcting myths and changing society’s perceptions and narratives about Down syndrome, while also providing valuable and appropriate health care and support.”

The awareness video is part of the international #WhatIBringToMyCommunity campaign, led by World Down Syndrome Day – https://worlddownsyndromeday.org/

The aim of #WhatIBringToMyCommunity is to empower people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community.

“Dear Health Professionals, we’re here to share a message. We’re all different and unique, we all have value, and everyone has the right to live a happy and healthy life.”

After the special screening in Palmerston North, the attendees enjoyed some food and shared what they all bring to their community.

The main themes that popped during that discussion were:

  • Positive attitude
  • Great meals
  • Sincere
  • Honesty
  • Laughter
  • Love
  • Unique perspective on life
  • Infectious smiles
  • How to manage stress
  • Persistence
  • Help others
  • Appreciate life
  • Consumer
  • Adventurous
  • Creativity
  • Positivity
  • Service
  • Encouragement
  • Trailblazers
  • Spunk

 

You can watch the video on Youtube
https://youtu.be/kgw-xvlcwZ8

By Edward Borkin

I recently attended a meeting which will help form questions in a survey.

The survey will be about people’s attitudes towards people with disabilities in New Zealand. There were people with many different disabilities and we all shared our personal experiences.

I went to the meeting to speak on behalf of people with Down syndrome. The message I wanted to share was “include us”.

I talked about how I was included by my old high school to open a new school gymnasium. This is because I won a gold medal at the World Summer Games in Greece. There were other athletes who opened the gymnasium with me such as Olympic medallist Bruce Kendall.

Another hot topic was around the support which people with disabilities receive.

We all came to the conclusion that the more support people with disabilities receive, the more they will achieve and succeed in the community. This increases positive attitudes towards people with disabilities.

I talked about the support I received from my job coach. This support has allowed me to be an employee at Pak’n Save since 2001.

My final message is that people with disabilities are good people and have value in the community. We need to speak up to be heard, respected and reach our full potential.

 

The STRIVE team came together recently for a Strive Self Advocacy and Awareness Fun shop at Vaughn Park in Auckland.

The team learnt more about Self Advocacy and several members presented on the subject during the weekend.

One of the most exciting outcomes of the weekend was that the team created the FRED song, for Freedom, Respect, Equality and Dignity, in which all members contributed and they hope to share with the public soon.

Peter Rees said he looked at the different rights and articles under the United Nations Charter for the Rights of People with Disabilities.

“I also did some media training with a quest speaker Tanya Black and learnt about the rights of Disabled people with another quest speaker Rose Wall.”

Like Peter, Edward Borkin said he really enjoyed the ten-pin bowling and social aspects of the Funshop.

He said the group made posters about the rights of people with disabilities, and he really enjoyed the company of his fellow STRIVE members.

Alexandra Hewitt said that the weekend included a workshop around friendships. “We all talked about research around acquaintances, friends, close friends and friendships with Franco Vaccarino.”

“On Saturday Morning we learnt and discussed different types of media, then it was exploring advocacy and awareness in four groups. I have learnt to put my voice to use on media about our rights.”

Erin also enjoyed and contributed to the media training with positive feedback, “which was lots of fun”.

“One new thing I have learnt is more participation in this funshop that includes getting out of my comfort zone,” said Erin.

Andrew Oswin explained that members of Attitude TV came along to assist in the media training and how to prepare for interviews.

“ I also enjoyed the many self-advocates attending from all over New Zealand,” said Andrew.

“The Health and Disability Commission presented a powerpoint and video. They spoke around the issues that affect a lot of New Zealanders with disabilities and how to make a complaint,” said Andrew, who added that last day celebrated the 10-year anniversary of Caroline, Duncan and himself advocating for people with Down syndrome.

“I learned to use my self-determination, self-confidence, leadership and advocacy skills, and being a rolemodel to the other self-advocates who will be the future members of STRIVE.”

Jess Water attended as a Strive Buddy and said that this Funshop had been the best one yet.

“I enjoyed seeing some of the Self Advocates finally click as they come to understand what they’ve been taught.”

She said that on the Saturday night talent show Mohit wowed her with his dancing, Carlos with his poetry and Georgia Garrett with her singing.

“Every funshop I attend, there is never a dull moment. I love being able to see these guys prove the public perception wrong.

“There are no better advocates for people with Down Syndrome, than people with Down Syndrome. I hope to continue attending these funshops for as long as possible as I really do enjoy them. Cannot wait for the next one,” said Jess.

To celebrate its 51st anniversary last July, Special Olympics International organised a host of events and activities focused on Unified Sports.

In Unified Sports, Special Olympians compete alongside and against people with and without intellectual disabilities.

Special Olympics New Zealand celebrated the Special Olympics Global Day of Inclusion with an exhibition football match in Christchurch on July 21,

The New Zealand World Summer Games Unified football team took on an invitational team made up of local athletes and Christchurch City councillors on the famous cricket pitch at Hagley Oval.

The match featured on TVNZ’s Seven Sharp programme and Frank Walmsley explained that as a unified partner in the team, he is part of the team, and not a coach.

“We’re there to play with the team, be part of the team. We make sure that everybody’s getting passed to, keeping their heads up when they go a goal behind. Just there to support the others,” said Walmsley.

Special Olympics NZ Chief Executive Carolyn Young said that unified sport creates great opportunities for people to connect. “And we really saw that at the Christchurch match.”

“The match provided an opportunity to showcase the benefits of making connections with a broader range of people in our community and demonstrates that we are better together.”

Both teams had great fun and put in an amazing performance. At the end of the day the World Summer Games team came out on top with a 1-0 win.

If you want to see the action on Seven Sharp, please follow this link.

https://www.tvnz.co.nz/one-news/sport/other/unified-football-team-mixed-special-needs-athletes-competing-alongside-those-without

By Joanne Holden

After four years as “camp mother” keeping the Roncalli College girls’ rugby team hydrated, a Timaru 16-year-old with Down syndrome has made her debut on the field.

Meghan Phillips burst into tears when her mother told her she would be donning yellow and blue stripes for the final five minutes of an hour-long match against visiting school Prebbleton on Friday.

“I’m a wee bit nervous,” Meghan said, ahead of the 3pm game.

While the Roncalli College Year 12 student was “rugby-mad”, she had only ever played the sport with her brother – so she enjoyed her first time practising and warming up with a team.

“I like playing rugby with all the girls.”

The Roncalli College and Prebbleton school girls 1st XV teams after their match. Photos: Bejon Haswell/Timaru Herald.

Although her team lost, Meghan scored the game’s final try – ploughing through half a field of opponents to ground the ball.

Meghan also got a shock when she learned her father and brother had travelled from Christchurch to watch her big moment, and sprinted over to them for a reunion after the game.

Roncalli girls coach Brad Sandri said Meghan had been getting water to the players and tees to the kickers since starting at the school four years ago, and was “a bit of a general camp mother”.

“She keeps everyone sorted. They’re never thirsty,” Sandri said.

Copyright: Stuff

Meghan Phillips, 16 has been a passionate supporter of the Roncalli College girls 1st XV for 3 years.

My parents and I went on the plane from Christchurch to Auckland to go to see Adam Lambert and Queen. We stayed in an apartment and I had a room all to myself with a TV in it as well. Before we went to the concert we went into the restaurant for dinner and I had a burger for my meal.

Rochelle at the Queen Concert

After that we walked to the Spark Arena to see the concert and it was amazing with all the special effects and I sang and danced all night. Adam Lambert was very good at the concert. He sang the Queen songs brilliant and Queen were really good as well. I had the best experience at the concert because it was fun and I really enjoyed it and I knew all the songs.

From
Rochelle Waters

Fifteen models with intellectual disabilities walked the catwalk at New Zealand Fashion Week recently as part of The Living Colour show, celebrating diversity.

They wore local designers from Zambesi to Kate Sylvester in New Zealand’s biggest showcase.

“I’m very excited,” one model told One News.

“I feel nervous I guess about catwalking but I am relaxing now,” another said.

After the show, there was a dance party for three hundred guests.

The show was organised by Dance For Abilities which is a not-for-profit organisation set up to give people with intellectual disabilities the opportunity to have a night out.

Founders Jonathan and Daniel Hopkirk were inspired by their sister Rosa, who was born with Down syndrome.

“We’d often go out, where there was often that barrier for her where that didn’t happen. So effectively this kind of creates that opportunity for people like Rosa to experience what we experience on a day to day basis,” Daniel said.

“Missy Boo, as her nickname is, or Rosa… we basically think she’s the Queen of sass so she runs the cutter at home. She keeps us honest,” Jonathan says.

Designers have welcomed the show to the fashion world.

Brittany Cosgrove from Nope Sisters Clothing says the show is usually known as not being very inclusive.

“It’s sort of known for being very exclusive and high-end… so it’s really good to see some actual changes being made.”

“It just knocks down a lot of barriers and a lot of walls to people’s perspectives on what they think disability might be,” Daniel added.

Copyright: TVNZ