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

 

 

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.

One evening in in March, I received an email from a dear friend, Ruby Wills, who is the Southern Coordinator of Upp Club Dunedin. She had sent me an invitation from The Med Students Association to speak at their Otago University Medical Students Conference.

My role was to speak on behalf of people with Down syndrome so it was a challenge to make a PowerPoint presentation and a speech to go with it, because I had to speak for at least 15 minutes.

First of all, I had to write a speech talking about my achievements and my experience with doctors, so it meant to choose the right photographs and to start building ap a Power Point presentation.

It took me a month to get organised. I was watching some videos on YouTube on how to talk clear and loud and make myself understood, practicing my speech in front of a mirror so I can be more comfortable so I can be ready to speak in front of the audience, putting my slides in order so the photos fitted with my speech.

And many more details, so when the big day comes I will be well prepared.

Speaking at the conference

The big day comes and I was on my way to meet Ruby at the Otago Museum, because the night before we decided to meet there.
All of the Med students were already there and I got myself introduced from that day until today. I have made dear friends who I will cherish forever.

On Saturday May 25, my friend Ruby started to speak first because she wanted to tell the Med students how she got involved in the role of becoming the Co-coordinator of Upp Club and the wonderful opportunities that this club has to offer. Then she introduced me so I could have my turn to speak.

I spoke with such enthusiasm that I made them to applaud me at the end.

The gala dinner

That night Ruby and I got invited to go to their Gala dinner at the Savoy and we had such a FANTASTIC evening. We had a delicious buffet and we danced until we dropped. There was a professional photographer who took many photographs of us. In other words, I had a wonderful experience.

An evening of fun

The topic of my speech was about a doctor’s influence in people with Down syndrome lives.
I said that one in every eight hundred people is born with Down syndrome; and doctors have to remember some key points if they one day see a baby with Down syndrome and they could have heart conditions, thyroid dysfunctions, vision, hearing, respiratory infections and intestinal problems.

Doctors also have to understand that people with Down syndrome are not sick, that it is not a disease and we do not suffer from it.

Fun on the dance floor

Parents who are receiving the Chat 21 journal and have a baby with Down syndrome please remember to take care of your baby’s health so they can develop better.
Also believe in our ability because we do extraordinary things, we can be part of society, we can be part of groups like STRIVE or Upp Club.
We can learn and we have different skills, we have big dreams and want to make them come true.

We can achieve many things in life if we have the opportunities and you, doctors and parents, can help us to make that big difference.
Think about the great effect you have on the lives of people with Down syndrome

Remember,
Like Michael Jackson’s song says:

Heal the world, make it a better place, for you me and the entire human race.  

Carlos dancing