By Coen Lammers

As the New Zealand Down Syndrome Association is heading into its 40th year, an effective  and strong representation of the Down syndrome community is getting more important with each year.

The NZDSA was founded in 1981, initially to support parents caring for a person with Down syndrome, but over the years this role has expanded rapidly to become a multi-faceted support and advocacy organisation.  
The volunteers and part-time staff that keep the wheels of the NZDSA turning are now recognised as key stakeholders in the most crucial discussions and decisions impacting on our community at a national and international level.
“We are recognised as an important parent organisation and a significant part of our work now involves stakeholder meetings that involve policy change and advocacy at Government level,” says Zandra Vaccarino, the National Executive Officer of the NZDSA.
Zandra, President Kim Porthouse and other members of the National Committee are in regular contact with the organisations that play a vital role in the lives of people with Down syndrome, like the Ministries of Health, Education, Disabilities, and Social Development.
“In some cases, we just keep advocating for years until they start listening to us,” says Zandra, who has been the face of the NZDSA at Government forums for the past 16 years.
The NZDSA also has a long representation on the National Screening Unit to discuss the practical and ethical challenges around increased screening for Down syndrome, while Zandra also works with Human Rights Commission, the Health and Disability Commission and the Disability Transformation Steering group.
STRIVE self-advocate Andrew Oswin and committee member Averill Glew also represent a strong NZDSA voice in the Disability Consumer Consortium, which represents all key stakeholders in the disability sector.

NZDSA staff meet with regional representatives.


“The NZDSA has a big voice in all these advisory and decision-making bodies, but it is vital that we represent everyone in our community. We encourage every person and family with Down syndrome to become an NZDSA member, so we know exactly who we represent in those discussions,” says Zandra.
“And the more people we represent, the bigger our voice is and the harder it is for any agency to ignore us.”
Unfortunately, the Government does not keep any comprehensive records of people with Down syndrome in New Zealand, who they are, where they live or what challenges they might be facing, individually or collectively.
“We only have records of how many children with Down syndrome are born in hospital, which has been roughly between 52-58 each year, but after that it becomes guess work. So we are really working hard to build our contact list, so we can find out exactly where our community is and what we can do to support them. 
“That’s why signing up to the NZDSA through our website (www.nzdsa.org.nz) is so important, so we can understand what you need and give you the information that is relevant to your situation.”
Zandra admits the limited resources of the NZDSA makes it difficult for the national body to provide advocacy support on an individual basis when parents need support dealing with a school, a doctor or an agency, but the association will know where families can get local support.
“We may not be able to go into a school with a parent, but we provide them with local contacts in our own community, a regional representative, or sometimes IHC.
“In many cases, however, we are able to provide parents with tips and strategies to upskill the parent, so they can deal with the issues themselves. Being able to empower a parent is one of the most powerful parts of our job.”
The NZDSA was created to support parents, which is still at the heart of their mission, but these days the focus has also shifted to empowering the person with Down syndrome and teach them how to advocate for themselves.
The NZDSA organises regular self-advocacy workshops in which its members receive specialist training to teach them about their rights and how to advocate for their own rights, as well as others.
The STRIVE group of self-advocates includes a six-person Advisory and Leadership Group who provide invaluable advice to the National Committee, as well as nine other self-advocates who are gaining new skills to potentially move into leadership roles.
“These people are the most powerful ambassadors of our community. They are all confident, articulate and go out in their own communities to represent the wider New Zealand Down syndrome community,” says Zandra.
Many of the STRIVE members have also taken part in the annual NZDSA youth camps, either as participants or as a support person.
The Youth Camp at the Sir Peter Black Marine Education and Recreation Centre in Long Bay is an annual highlight on the NZDSA calendar.
“Each year, the NZDSA invites young people nominated by each region to join a weekend of adventure and fun,” explains Zandra. 
“At the camp they make new friends, learn new skills and build their confidence.”
The Youth Camp is supported by volunteers from each region, which enables these regional representatives to share experiences and become part of the national network.
The camp alternates between a camp with more independent young people who are happy to travel without their parents, while every second camp focuses on young people with higher needs who require regular support from a caregiver.
“But we really want the camp also to be a real respite weekend for those parents who are on duty 24/7.  Where possible, NZDSA volunteers take over the care of the youngsters during the activities, so the parents can relax, go out for a coffee or  wine, and participate in other activities for the parents, as well as sharing experiences with other parents who have children with very high needs.”

The NZDSA ball in Auckland in December.


Aside from the work by the NZDSA, the Down syndrome community is also fortunate to have strong local support groups in many regions that provide boots on the ground for support, advocacy, social contacts and information.
The NZDSA committee is made up of representatives from the six zones, who liaise with their own regions and representatives from the local Down syndrome groups.
The committee has regular meetings, in person or by Zoom, to discuss current issues the NZDSA needs to be involved in and to receive feedback and ideas from the regions.
Zandra says that the interactions are a two-way street, where the NZDSA in some cases refers inquiries to the regions, while in other cases the regions contact the NZDSA to get the support they need. 
“Our National Administrator Linda te Kaat takes many of those calls. We call her Detective Linda because if she does not have the answers, she will keep digging until she has found the best person or organisation to help out,” laughs Zandra. 
“And we don’t just give out a number, but we will contact that organisation first to find out if they are the best people to help our members.”
Linda te Kaat also manages a large pool of resources that are available for NZDSA members, like Numicon kits, educational DVDs on several themes, and distributes the new parent packs for new parents of children with Down syndrome.

Zandra Vaccarino with her son Vincent and his wife Rachel.


Aside from its advocacy and information roles, the NZDSA has been organising or has been part of numerous workshops on a host of issues like health, education, ageing, self-advocacy, employment or human rights.
“In some case they are just for our community, but in many workshops we work closely with other organisations in the disability sector. We think it is important for us and our members to build communities of people who face the same challenges,” says Zandra.
Those connections are not just restricted to our shores, as the NZDSA also collaborates with international groups like Down Syndrome International (DSI) and Inclusion International. The NZDSA staff are in regular contact with their key counterparts overseas, especially in Australia. 
The NZDSA staff take part in virtual conferences, including the Asia Pacific Down Syndrome forums, and if the NZDSA is able to secure funding support, they attend the World Down Syndrome Conference every two years in person, to share the latest research and developments with the regions and to continue building international connections.
In the lead-up to World Down Syndrome Day, the NZDSA works closely with DSI to support the annual theme the international community chooses for that year. 
“Most years we have created a special video on that theme that we distribute to the community, to media and through our social media platforms to celebrate people with Down syndrome and raise awareness around New Zealand,” says Zandra.
The NZDSA Facebook page has a large following, inside and outside the Down syndrome community, but is just one of several communications tools it uses to communicate with its own families, as well as other stakeholders like educators, Ministries and health professionals.
“The NZDSA recognises that communicating and connecting our community is the most important part of our role, so we have invested in a part-time communications advisor, who is also the editor of our quarterly journal CHAT 21,” says Zandra.
“He works closely with our Social Media Officer to connect through social media and put out a regular E-newsletter to all our contacts, as well as looking for media opportunities for stories around Down syndrome,” says Zandra.
She explains that the NZDSA uses those communications platforms to share their own news, but also support the regions by promoting regional news and events by sharing it with all their contacts.
“All the different regions are doing an amazing job helping our families, and are often best placed because of their local connections, so our role is to provide a connection between the regions, support them where we can, and represent them at a national level.
“But we are only as good as the feedback and support we get from everyone in the regions. “So we are working hard to find and connect with every family in New Zealand, be more visible to our community, so we can represent them more effectively.”

New Zealand families share their stories about welcoming a child with Down syndrome into their families.

 

 

NZDSA Media release

The New Zealand Down Syndrome Association (NZDSA) has welcomed the first international guidelines for educating learners with Down syndrome which were released last week. These guidelines are an important document that will inform the education needs, inclusion and life possibilities of learners with Down syndrome.

Down Syndrome International (DSi) has developed these guidelines, using experts and existing research from around the world, to enable teachers to help their students with Down syndrome reach their full potential.

NZDSA National Executive Zandra Vaccarino thinks these guidelines are a game changer and will become an invaluable asset to New Zealand educators.

“We know that educators in New Zealand will welcome this resource as there is a great need for expert guidelines to  teach students with Down syndrome,” says Mrs Vaccarino.

“These new global guidelines have pulled together the best practices available around the world and will facilitate the realisation of the right of people with Down syndrome to an inclusive education and lifelong learning.”

New Zealander Bridget Snedden, Vice Chairperson of DSi says these guidelines have been developed to improve the availability and quality of education for people with Down syndrome around the world.

“We need to raise the expectations among educators of what young people with Down syndrome are capable of,” says Snedden who was closely involved in developing the guidelines.

Snedden’s own son Alex is 32 now, “and I think if we had these guidelines when he was at school then it would have made his full inclusion a more positive experience for everyone and would have increased the expectations of teachers and supported his inclusion at school”.

Vaccarino says that  the need for international guidelines has been a hot topic at the international conferences the NZDSA has attended.

“I was fortunate to attend, along with other New Zealand parents and a host of representatives from all over the world, a vital session to discuss  issues with inclusive education and to find solutions.  The outcome was the need for a document that would provide guidelines that could be used worldwide,  so we celebrate this resource that DSI has published.”

According to Snedden, Down Syndrome International sees full inclusion of students with Down syndrome as the key to successful outcomes at school and in life.

“Even in 2020, too many New Zealand schools will direct students to learning support units, essentially segregating them from the peers in their community, without fully exploring opportunities to adapt the curriculum.

“There may be good reasons to do so, but too many students end up going through school without interacting with their non-disabled peers, not giving all children the opportunity to learn from each other and the skills they need when they finish school to participate in the wider community,” says Snedden.

“We hope these guidelines can facilitate greater independence and future employment.”

To download the guidelines, please go to:

https://www.ds-int.org/Handlers/Download.ashx?IDMF=7a4a9546-287d-49c1-8573-888319d7310f 

Media release from Associate Minister of Education Tracey Martin

Students with high and complex learning needs, as well as their teachers and parents, will benefit from a substantial increase to Ongoing Resourcing Scheme (ORS) funding, Associate Education Minister Martin announced today.

“Nearly $160 million will go towards helping these students by lifting their base support over the next four years, and by providing extra short-term support in response to the impact of COVID-19,” Minister Martin said.

Hon Tracey Martin

The baseline increase of $128 million over four years will support students who are ORS verified by increasing the average ongoing funded teacher aide hours per week from 10 to 13 for high needs students and 17 to 20 for very high needs students. This increase will take effect from the start of term three 2020.

The actual number of teacher aide hours allocated to individual students will be based on individual need. This will enable these students with complex needs to have ongoing support to increase attendance, participation, engagement and progression.

“In addition to this, an extra $31 million response fund will be available from now until June 2021 for schools to employ additional teacher aide support for those ORS students who need extra help on their return and transition back into school due to COVID-19,” Minister Martin said.

“After an extended period away from their learning routines due to lockdown, some students who are ORS verified may need additional teacher aide support to strengthen their attendance, participation, engagement in learning, and to reduce the stress and anxiety of transitioning back to school.

“For example, I am aware that some students’ transition visits have been delayed as a result of lockdown. The response fund will assist students in these types of situations.”

The response funding can only be used for teacher aide hours to the end of June 2021. It will enable schools to employ up to an additional 1,025 FTE teacher aides for one year.

To speed access to the fund schools will complete a simple application for their ORS verified students.

Linda te Kaat  attended the New South Wales Down Syndrome Health Conference and reports how oral health is a major issue to consider for caregivers.

Oral health is the greatest health need for people with Down syndrome.  Oral disease shares common risk factors with cardiovascular disease, diabetes, cancer and chronic obstructive pulmonary disease. 

What is dental disease, and can it be prevented? 

 

  • Decaying teethA cavity can result in tooth enamel dissolving over time.  Early prevention can reverse tooth decay. 

 

  • Periodontal diseases This effects the gums and bone around the teeth.  Gingivitis is reversible and signs are red and swollen gums and bleeding on brushing.  There will be no signs on an X-ray and no pain and may be present in more than one tooth.  This develops more quickly in people with Down syndrome due to an altered immune reaction to plaque.  Bacteria invade below the gums to cause inflammation which can lead to bone loss around the tooth root if not treated.  X-rays are the only way to show if there is any bone loss. This also leads to bad breath and teeth can get loose or move and pain can occur on biting.    There is often no pain in late stages of this disease and it always requires dental treatment.     

 

  • Trauma to tooth or jaw.  Falls can cause dental trauma.  Any tooth that has been chipped, moved or discoloured needs immediate treatments.  Teeth that have been knocked out can be put back in again but never touch the root of the tooth and get the tooth to a dentist immediately.  Dead teeth do not hurt but can be infected.  Falls on the chin with problems opening the mouth may be a fracture to the jaw. 

 

  • TMJ (Temporomandibular joint & muscle disorders). This is caused by trauma to the jaw or TM joint or by grinding teeth from stress.  That symptoms to look out for are  pain or stiffness in the chewing muscles (often one sided), limited movement or locking of the jaw, painful clicking and popping or grating in the jaw on opening. This conditions tends to be more common in woman.  The treatment is often simple and in most cases the discomfort will go away with little or no treatment.  Eat small pieces of food, apply ice packs or heat packs.  Avoid extreme jaw movements like wide yawning and chewing gum.  Short term use of Nurofen may be useful. 

 

Without X-rays, up to 40% of decay can be missed and therefore it is vital that these are carried out routinely.   

Toothbrushing requires the same manually dexterity as handwriting and many people with Down syndrome find this difficult therefore regular dental care is required.   

Often cysts may not be painful, and antibiotics can stop the pain and infection, but infection can still be in the bone and not picked up without an X-ray.   

Chronic pain can lead to changes in behaviour and people with Down syndrome can have a high pain tolerance therefore once it reaches the level of pain it can sometimes be a major dental problem.  
Always use toothpaste with fluoride in it and never rinse the mouth after brushing.   

Savacol is good for plaque build-up and a mouthwash with fluoride is ideal.  This can also be used on a toothbrush to brush around teeth if they person is unable to swish and spit.    

The Oral-B electric toothbrush was also recommended as not only one of the cheapest but also the best to use but sometimes electric toothbrushes are not tolerated by our young onesso use gradually to get used to it and start at a young age.   

 

You should seek professional care when there is: 

  • Any swelling of the mouth, face or neck.   
  • Any ulcer that does not heal 
  • Any persistent burning of the mouth 
  • Any severe pain in the teeth – even if it stops 

 

For people that cannot explain their symptoms, watch out for a change in eating habits, oral behaviour or bad breath 

 Before going for treatment, discuss with the person with Down syndrome what is going to happen and use books to illustrate what they can expect. 

Always keep the language positive and if possible try to have a first visit as an introduction without any serious treatment. 

 

By Susan Foster Cohen, Director of the Christchurch Early Intervention Trust and Champion Centre  

Raising a child with Down syndrome can be a better experience for parents if they are able to share their experiences with other families going through a similar journey.  

The Champion Centre’s model of early intervention has many essential elements that reflect best practice and one of them is the deliberate bringing together of parents with the hope that it will kick-start friendships and support networks between them.  

By attending the Centre in small groups one morning a week during school terms, families not only receive individualised support for each of the children, but have frequent opportunities to meet and connect with other families/whānau  whose children are at a similar age and stage 

Perhaps the most important moment in a Champion Centre morning from this perspective is the opportunity for conversation over a cuppa and a biscuit at morning tea.   

This relaxed and necessary break from the focus on each child’s development is when parents can begin to learn each other’s stories.   

Group music is another moment deliberately designed into the model of service where parents and children can enjoy playing musically together.  Sometimes the permission for parents to play results in more rowdy behaviour from the adults than from the children! 

When it is time for children to move on to school, we hope that both the children and the parents will have formed bonds with other families that will serve them well into the future.  We encourage parents to support each other in sharing information and advocating for their children as they go through life. 

Chat 21 Editor Coen Lammers was one of the parents experiencing the benefits of that peer support when he was part the centre’s programme with his daughter Bella and wife Suzi.  

Bella and Coen recently presented to the Annual General Meeting of the Champion Centre to share their experiences and talk about the continuing value of the peer networks in their lives. 

Bella spoke about her school, her work, her sports, her dancing and her social life, where in many cases she still enjoys the same friendships she developed when she attended the Champion Centre more than 13 years ago. 

The 18-year-old still hangs out with the UPP Club Christchurch, dances at Jolt and swims against the same young men and women, she learned to crawl and walk with as a toddler. 

At that same AGM, her dad explained that the connections for the parents are also still just as strong and just as important. 

“We are lucky that the “Class of 2001” brought together a group of parents that instantly clicked, and we still see each other regularly,” said Coen. 

He said the families get together regularly for birthday parties and other key events, and have created a Christmas meal tradition where the children are not invited. 

“The interesting thing is that at the start we often talked about our children, about schools, funding or health issues, but as the years progressed, we have just become really good friends, well beyond the Down syndrome connection.” 

“That connection brought us together, but is not why we get together. Saying that, having this group of parents still provides support when we need it, an opportunity to share information or spark some inspiration if we see one of the children doing something amazing,” says Coen. 

 

By Diane Burnett 

To celebrate her beautiful baby girl Paige and World Down Syndrome Day 2020, Dawn Goddard had an inky idea.

Dawn wanted to get as many people as she can to get the world-renowned ‘the lucky few’ tattoo on 21st March, World Down Syndrome Day 2020.

Over 50 people from across country from the New Zealand Group for Parents of Children with Down Syndrome Facebook group showed an interest.

Off the back of this interest, Dawn contacted and organised quotes from a few tattoo studios and has confirmed that Aaron V, co-owner of the family owned private tattoo studio 2 Sparrows Tattoo in Pakuranga, has kindly offered to donate his time for free and change only $50 per ‘the lucky few’ tattoo to cover the cost of the materials required.

“The minimum cost for most tattoos nowadays is $150 plus, so this is amazing,” says Dawn.

Dawn, a photographer, also photographed the event and hoped to get the media involved to create a fun news story to raise awareness of Down syndrome for World Down Syndrome Day 2020.

The original idea and design started in the United States where Mica May, a designer, had an idea to celebrate being a parent of a child with Down syndrome by designing a special tattoo for #theluckyfew.

She shared her idea with several other mums at their first gathering, having previously only met online. Their connection was immediate, and they discussed getting matching tattoos to acknowledge their bond.

At that point Mica spoke up and told them about the reoccurring dream she’d been having for a long time.

 

In the dream, she wakes up with three black arrows on her arm – always the same design and always the same placement. As she described the design from her dreams, tears started rolling down the faces of the other mums, and everyone said “Yes! This is our design”.

The three arrows are the perfect symbol for parents of children with Down syndrome, because the number three is representative of the three 21st chromosomes that result in Down syndrome and the arrows represent how the parents of these special children rise up and move forward.

“We rise the highest after we’ve been pulled back and stretched — sometimes even more than we think we can bear,” says Mica May.

The group tested the design on themselves that evening using a pen and decided to all get the tattoo the next day. But what started as a bonding moment for a small group of friends has grown to include hundreds of other parents from all over the world.

Last year, in Newquay in the UK, thirty parents joined the global campaign to raise awareness of people with Down syndrome. Each got ‘the lucky few’ tattoo to show how proud they are of their children and siblings with Down syndrome, and a person with Down syndrome also got the tattoo along with her mother and sister.

Dawn contacted one of the organisers of this event and got the details for the original designer, Mica May, who she contacted. “She has given us her blessing to use the design,” says an excited Dawn.

 

 

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 David Skipworth

Not many people would get away with interrupting Warriors coach Stephen Kearney while he’s delivering a team talk.

Fewer still would dare to continue to speak over the top of the notoriously stern former Kiwis back rower and World Cup winning coach.

But Mark Dekker – or ‘Mark Carter’ as he prefers to be known – is the exception to the rule, and the one person guaranteed to turn Kearney’s frown upside down.

The 31-year-old with down syndrome began working with the Warriors football staff earlier this season and has been welcomed into the club’s inner sanctum in his role as the team’s official water runner.

The longtime Warriors supporter enjoys exclusive access to the players and is regularly included in their team huddles, joining in their breathing exercises and sharing a few motivational words in the lead-up to game day.

He picks and chooses his moments to speak and feels comfortable enough to interject – even if Kearney is delivering a fierce verbal spray to his players.

“We might be getting a growling and Mark will just walk into the huddle and stand under Mooks’ arm or start talking over someone,” explained front-rower James Gavet.

“Everyone will be grinning and you glance over at Mooks and even he’ll give us a look that says, ‘I really want to be angry but I can’t right now’.

“It’s usually all business and there’s not a lot of time to joke around, but Mark brings out a different side and can lighten the mood.”

Mark Dekker in his role with the Warriors. Photo / Greg Bowker

Dekker’s connection with the Warriors began earlier this year when Kiwi Ferns playmaker and club community relations coordinator, Georgia Hale, offered him the opportunity to get involved.

Twice a week, rain, hail or shine, Carter and his caregiver, Leighton Swann, can be found at Mt Smart Stadium, helping Warriors team manager Laurie Hale prepare water bottles and equipment at training.

The club issued Dekker with his own timesheet that he fills out after each shift and his contribution to the club gives him enjoyment and adds some structure to his week.

“He comes into most sessions so he’s got a bit of a presence amongst the group and staff,” said Kearney.

“He helps fill the water bottles and the boys have embraced him. He does a pretty good job.”

Prior to the Warriors’ round three win over Canberra, Dekker was invited to share a few words in the team huddle, when he borrowed a line from Kiwi social media star William Waiirua: “Do the mahi, get the treats.”

“The boys were all buzzing and came and told us what he’d said,” explained Swann.

“Stephen came over afterwards and gave Mark a big hug and said ‘I think we’ll stick with that saying for the season’.

“Everyone at the club has taken to Mark and shown him a lot of love. I’ve got a lot of time for the Hale family, they’ve got big hearts and Lozza needs to be commended for what he does with Mark.

“It’s so awesome to see the genuine care and love they have for him and whanau environment they have created.”

While most Warriors fans would nominate club icons such as Stacey Jones, Manu Vatuvei, or star halfback Shaun Johnson as their favourite player, Dekker is taken by Mark Carter – the former All Black who switched codes to play just eight games for the club back in 1996.

“That’s the name that he associates with and Carter’s Warriors number was 31,” explained Swann.

“Every time he goes into the sheds he shows the boys number 31 and the name Mark Carter.

“It might not be the most popular choice but its Mark’s choice and he likes the name as well.”

Dekker is particularly close with Gavet, along with wing Charnze Nicoll-Klokstad and ISP centre Junior Pauga, but has won the entire club over through his infectious sense of humour, positivity and work ethic.

Mark Dekker greets Warriors forward James Gavet. Photo / Greg Bowker

“They’re a good team,” said Dekker. “Rugby league is a great game and they are my good mates. It’s awesome.

“We work hard but when you do the mahi, you get the treats.”

Warriors captain Roger Tuivasa-Sheck says Dekker’s presence helps keep the players grounded and serves as a reminder of how the club can help people out in the community.

“It just puts things in perspective having him here,” said Tuivasa-Sheck.

“He’s a big supporter of the club and no matter what happens or goes on he always turns up with a smile on his face which keeps the boys happy.”

 

Mark Dekker who was born with Down syndrome is regularly helping the NZ Warriors NRL rugby league team at training sessions at Mt Smart Stadium, Auckland. 9 June 2018 New Zealand Herald Photograph by Greg Bowker.

Mark Dekker in his role with the Warriors. Photo / Greg Bowker

Copyright: New Zealand Herald.

The IHC Advocacy team explains why the right to make your own decision is so vital to people with Down Syndrome.

Being able to make our own decisions is a key part of how we all live our lives.

From choosing between whether to have jam or Marmite on your toast, to deciding on who to live with and how to spend your money – these are all decisions we often take for granted.

However, people with intellectual disabilities still face many barriers when it comes to making decisions for themselves and having those decisions acted on.

And for parents or caregivers whose child with an intellectual disability is about to turn 18, the question of what happens next is one we receive often.

How do we best support our adult sons’ and daughters’ decision making?

How can we best support and protect our adult children when they need other people’s help to interpret and represent their choices? And how do we get these decisions recognised as valid decisions?

IHC has always advocated for people with intellectual disabilities to have as much of a say as possible in how they want to live their lives – and naturally there are times when assistance is needed.

Supported decision making empowers people with intellectual disabilities to make their own decisions on an equal basis with others.

It is a right under Article 12 of the United Nations Convention on the Rights of Persons with Disabilities. It means having the right to self-determination, being able to make decisions and having the proper support to do so – and in those instances there are a series of relationships, practices and arrangements put in place to achieve that.

Typically, other people’s judgement of an individual’s capacity and ability to make decisions determines the extent to which they allowed to make their own decisions.

There is a general misunderstanding about intellectual disability and capacity, with views that capacity is fixed and that unwise decision making indicates a lack of capacity. If a person with an intellectual disability makes a poor decision, they can be viewed as being incapable of making future decisions – but, like building a muscle, the more someone has the opportunity to do something, the better at it they become.

The support a person needs will look different for each individual and can change with each decision being made. Knowing and understanding the person who is being supported is critical, as is ensuring that the right support people are involved for specific decisions being made.

In New Zealand, the Family Court authorises legal orders, such as welfare guardianship, so that others can make decisions on the behalf of someone with an intellectual disability – this is substitute decision making. This legal framework has been determined by the United Nations Committee on the rights of Persons with Disabilities to be inconsistent with the spirit and intent of Article 12, which requires a shift towards a supported decision making legal and practice framework.

This shift will require changes in practice in many areas, including how people with an intellectual disability can make decisions around health, living arrangements and finances.

In many instances, we’ve heard of bank staff insisting that families apply for welfare guardians to support their child with finances.

Another issue that can create difficulties for people with intellectual disabilities who are subject to Court Orders is that there is no training given to welfare guardians and property managers, nor any monitoring of their performance to ensure people with disabilities are not being taken advantage of, or are being misrepresented.

New Zealand’s progress on implementing recommendations set out by the UNCRPD is up for review this year, and the question of whether people with intellectual disabilities have the right supports and safeguards to make their own decisions will be evaluated.

It is crucial that we have laws, policies and practices that support people’s rights to make decisions and have those decisions respected.