CHAT 21 Summer 2018

CHAT 21

Issue 76 Summer 2018

CO M M U NICAT IO N | HOL ISTIC | ADVOCAC Y | TAONGA

Journal About & For The New Zealand Down Syndrome Community ISSN 11776323

STRIVE and self-advocacy teams at the Auckland Funshop

Contents

From the Editor

National Executive Officer

5

Chasing that dream job

8

Supported employment services

12

Christmas presents

14

Transformed disability system kicks off

16

Down Write Brilliant

17

President's pen

21

Meet the other NZDSA committee

22

Easy as riding a bike

24

Speech Therapy: 5 tips for pre-schoolers

25

Adventure, camaraderie and dancing at NZDSA Youth Development Camp

26

STRIVE team finetunes advocacy skills at Auckland Funshop

30

IHC book reviews

31

NZDSA notices

32

NZDSA resources

33

Contact directory

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This issue of CHAT 21 was made possible with donations from Southern Stars.

Welcome to the Christmas edition of CHAT 21.

On behalf of the NZSDA National Committee, staff, contributors and myself, I want to wish you all a wonderful Christmas and all the best for 2019.

When we head into the Christmas period, we get time to take a breath and look back at the past year, as well as looking ahead at the new year.

For ourselves and many of our family members, the start of a new year means change, whether that is the transition to primary school, high school or into the work place.

Those changes often go with a lot of stress and anxiety, so for the last edition of 2018 we have decided to focus on employment, which for most of us takes up a big chunk of our lives.

The pathways and opportunities are not always clear, so in this edition we have spoken to several organisations who are helping people with disabilities to create a fulfilling life through paid employment.

The organisations have different objectives and strategies but all seem to have a genuine desire to showcase and develop the skills that people with Down syndrome can offer the workplace.

There are dozens of organisations supporting people with disabilities in employment in New Zealand, so we have collated a list of all organisations we could find in your local areas. If there are more, we would be keen to hear from you, so we can publish their details in future editions.

In this edition, we feature several people with Down syndrome talking about their jobs and it is wonderful to see the pride, confidence and sense of purpose they get from their roles, whatever that may be.

In this edition, we also report on the NZSDA Youth Camp and the STRIVE Funshop, both held in Auckland over the past few months.

And to get into the Christmas spirit and provide you with some last-minute ideas for presents, members of the Down syndrome community have provided a terrific list of presents that their own children enjoyed and that may be perfect for your child.

You will also find an inspirational story from Glen Jelly in Otago showing how he taught his daughter Jessica how to ride a bike. For many of our youngsters with Down syndrome, riding a bike remains a distant dream, but Glen demonstrates that perseverance and a few bruises go a long way.

We have also decided to tell you a bit more about

Disclaimer Through the quarterly Journal, the New Zealand Down Syndrome Association will attempt to report items of interest relating to Down syndrome. The NZDSA does not promote or recommend any therapy, treatment, agency, product, political position, religion or advice. The opinions expressed in CHAT 21 are not necessarily those of the NZDSA. The editor reserves the right to make corrections to materials submitted for publication. All photos sent in to the journal become the property of the NZDSA and can be used in other NZDSA publications.

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Coen at the 2018 NZDSA Youth Development Camp

the people that represent you around the country on the National Committee of the NZSDA and the staff that are supporting them. Nothing like putting a face to a name in case you are looking for your local contact to raise any issues with the NZSDA National Committee.

Plans for next year’s CHAT 21

Like every organisation, the Christmas period is a good time to reflect and plan for the coming year, so we have been brainstorming with representatives from around the country what else you may want to see in this journal.

That discussion created lots of new ideas and showed a need to provide more information in different areas. Naturally the articles are only as good as the information we are provided so I am calling on all our members to think about articles or expertise that they may be able to share with the rest of the community.

In the coming year, we hope to start regular feature articles on Education, Health and Housing, regular sections on The Perfect Job and My Favourite Pets as well as a regular Regional Focus on different regions.

If any of our members feel they can contribute in any of these areas, please get in touch on my email below.

CHAT 21 | Issue 76, Summer 2018

We want to hear from all corners of the country, even if it is just a photo with a caption of a moment in time that you would like to share.

The contributions do not have to be earth-shattering or comprehensive, but our community just wants to hear from others around the country to see what you are up to in your day-to-day lives.

Finally, I also want to start a letters section, so please send us your thoughts, your stories, your gripes or anything you want to share.

If you have any ideas, questions or suggestions, do not hesitate to contact me.

Merry Christmas and a terrific 2019.

Coen Lammers Editor editor@nzdsa.org.nz

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National Executive Officer “Volunteering is the ultimate exercise in democracy. When you volunteer, you vote every day about the kind of community you want to live in.”

– Author Unknown Kia Ora On behalf of the NZDSA I would like to extend our appreciation and gratitude to all the past and current volunteers, who through their extensive contributions continue to shape the Down syndrome community.

I hope that on Monday the 5th December you took a moment to celebrate International Volunteer Day. I believe special recognition should be given to the outgoing NZDSA President, Shelley Waters, a dedicated volunteer who has served the NZDSA with passion and commitment to foster a vibrant, responsive and sustainable organisation. Shelley, we appreciate all your contributions.

This quarter I received a nomination from the Burnett family who nominated the wonderful Sirrea Lumsden (age 9) for the NZDSA Rose Award.

with North Shore RDA and Sirrea with Auckland Equestrian Centre.

Most buddy's spend time together during a setperiod/time arranged by their teachers, but Sirrea goes above and beyond the role of 'buddy'.

She visits Jada at break times to hang-out and play her favourite games with her and her class friends, and she spends time with her on the playground before, during and after school too. She sometimes doesn’t have long but will pop-in to say ‘hi’ with a smile and a hug and she’ll get down low to chat with Jada directly, genuinely interested in what she has to say.

I would like to acknowledge Sirrea for her easy carefree spirit, for accepting everyone for who they are and for being a wonderful, kind and caring friend to Jada this past year. Her actions, for being just who she is, promote acceptance and value diversity for all to see and follow in our community and beyond.

She has a big heart that is full of love and kindness".

The Rose Award

The Burnett family, Di, Brad, Jada, Marlowe and Ivy said that "Sirrea has not only been a great 'buddy' and friend to Jada but she has been, and is, a great role model to everyone around her, especially her peers and Jada's classmates.

She goes out of her way to be a great 'buddy', but it is just her - she has an amazing, friendly, happy and fun personality and she not only engages with Jada in the most wonderful way, she also interacts with the whole family.

She has a nick-name for Jada's younger brother Marlowe ('chipmunk') and she takes Jada's little sister for piggy back rides and just likes to be with us all and play.

Sirrea has waited at the front gate or in class for Jada to arrive many mornings over the year, so she could encourage Jada to class, play, read, listen and be there for her before school started.

She runs up the road or across the courtyard to catch-up to us to say ‘hi’ and give hi-fives and hugs – she has a special hug routine designed just for Jada.

Sirrea was assigned as Jada's buddy at the beginning of the year because both girls ride horses – Jada

National Executive Officer

Sirrea and Jada reading

5

MidCentral Regional Leadership Group.

MidCentral Transformation - Mana Whaikaha

The prototype of the transformed disability support system, Mana Whaikaha, launched in MidCentral on October 1.

The launch was hosted in Palmerston North and the morning was charged with celebration.

Lorna Sullivan, one of the Directors of Mana Whaikaha said “what was most impressive about the launch was the deep sense of investment and ownership that Disabled People and whānau have in this new system”.

Three weeks after the launch over 300 people have engaged with a Kaitūhono/Connector and we are starting to hear positive stories of how people are exercising their choices to meet their needs.

If you want regular updates about Mana Whaikaha, you can read regular posts on https://www.manawhaikaha.co.nz

NZDSA 2018 Annual Report

What is Mana Whaikaha?

Mana Whaikaha is a prototype of a transformed disability support system which is funded by the New Zealand Government, through the Ministry of Health.

The prototype, which will operate on a 'try, learn and adjust' approach, is being tested in the MidCentral DHB region, which includes these districts: • • • • •

Mana Whaikaha has been co-designed over the past 18 months with disabled people and whānau, and others in the disability sector. It is based on the Enabling Good Lives vision and principles and aims to: • •

• •

CHAT 21 | Issue 76, Summer 2018

Palmerston North Horowhenua Manawatū Ōtaki Tararua.

provide disabled people and whānau with more flexible support options give disabled people and whānau greater decision making over their support and lives improve outcomes for disabled people and whānau, and create a cost-effective disability support system.

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Zandra at the 2018 NZDSA Youth Development Camp

I usually include an extract from the NZDSA’s Annual Report but I haven’t done that this year as this edition of CHAT 21 is a bumper edition and we just don’t have space to include an overview. So, if you would like to read the NZDSA’s Annual Report please email me at neo@nzdsa.org.nz and I will email you a full copy.

Youth Development Camp - Southern Stars

Thank you Southern Stars for making it possible to host the Youth Development Camp at Vaughan Park in November 2018. You can read all about the weekend in this edition of CHAT 21.

World Down Syndrome Day

It is time to start planning how you will celebrate World Down Syndrome Day on the 21st March 2019.

The NZDSA will be promoting two campaigns to create awareness, to promote Down syndrome and to fundraise in our communities.

•

•

The first campaign is T4T (Tea for Trisomy 21) the NZDSA’s signature event to celebrate World Down Syndrome Day (WDSD). We encourage people in our community to host a Tea party in their homes, work place, recreation and leisure spaces to mark World Down Syndrome Day. The second campaign is LOTS OF SOCKS, which is an opportunity to wear socks in all shapes, sizes and colours which

National Executive Officer

will start conversations about WDSD, create awareness of Down syndrome and raise funds for the NZDSA so that we can continue to provide support and information to people with Down syndrome and their family and whānau.

We will once again be using Everyday Hero to create online fundraising events. If you would like to know more about hosting a T4T party or LOTS OF SOCKS please email Jess (nzdsainfo@xtra.co.nz) so that we can forward you an information pack.

Summer break

Yes, it is that time of year when the team at the NZDSA national office starts to consolidate our work for 2018 and plan for events in 2019. The NZDSA national office will be closed from the 18th December 2018 to the 7th February 2019.

We would like to publish your favourite summer photographs in Enews and the next edition of Chat 21 so please send your photographs to Jess at (nzdsainfo@xtra.co.nz) The NZDSA National Committee and staff wish you and your family a blessed Christmas and a peaceful and festive season. Enjoy the lovely summer weather.

Hei konei rā Zandra

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Chasing that dream job Transition into the workplace and holding down long-term employment remains a challenge for many adults with Down syndrome. COEN LAMMERS examines the employment sector, the access for people with learning disabilities and the success stories that might inspire others in the community.

New Zealand has a long and proud history of mainstreaming students with disabilities, but many families feel they are dropping off a massive cliff at the end of high school.

The pathway between pre-school, primary school and secondary school is clearly sign-posted and well-supported, but where to from there?

Finding your own place in the world is an intimidating challenge for every young adult, but for people with Down syndrome and their families, it often feels like the big unknown.

Securing employment is a key element for a rewarding life and gives every person a source of pride and independence, but for many people with learning disabilities full-time, long-term employment appears to be a pipedream.

“New Zealand is doing as well as any other country getting people with disabilities into employment, but we still have a long way to go as far as creating better pathways for younger people,” says Grant Cleland, chief executive officer of Workbridge New Zealand.

CHAT 21 | Issue 76, Summer 2018

Workbridge is the country’s largest “pan-disability” employment service provider and assists around 3000 people with disabilities to secure employment each year.

Over the past decade, Workbridge has linked 36,800 New Zealanders with learning difficulties, mental health issues, sensory, physical and other disabilities or health conditions with a suitable job and supports them to be successful in the workplace.

Cleland says that his organisation in 2017-18 had 1,664 employers who listed 4,061 vacancies with then, of which 1,332 provided a job for their jobseekers and 55% hired more than one person with a disability.

The list includes several strong national partnerships like Accor Hotels, ACC, IRD, Victoria University, Westpac and of course Z-Energy who in recent years alone have employed over 300 people with disabilities.

“Those companies are leading the way, but the list is growing each week,” says Cleland.

He says that the attitudes around employing people

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Abigail Knight is enjoying her new job at PDH Media.

with disabilities is changing rapidly and is no longer seen as charity or a community service.

“Employers are more willing to try new things, are getting more disability-confident and the conversation around disabilities has become much more genuine,” says Cleland.

He says that the staff shortage for many companies has opened their eyes to a new talent pool that they had not considered.

“There are a lot of myths around people with disabilities, but the research clearly shows that they are just as productive as any other employee.”

Cleland says that some employers are wary of looking at this group because they fear that a worker with a disability may require significant support and resourcing, but research shows that less than 10% of disabled jobseekers need some additional support or alteration to their work station.

“Research shows that hiring a person with a disability has a wonderful impact on the workplace and is also a good reflection of our community as 24% of New Zealanders have some kind of disability, illness or long-term injury.”

Employment is one pathway for people with disabilities, but many families in the Down syndrome community have decided to take control of the situation by creating their own micro-businesses.

“Ten years ago, there were maybe five microbusinesses around New Zealand, but now there are hundreds,” says Lawrence Chok who has been the driving force behind many of those micro-businesses.

With a background in the corporate world, Chok

Chasing that dream job

decided 11 years ago that he wanted to create a micro-business for his son Robin, who has Down syndrome, but realised he could not do this alone.

“Many micro-businesses fall over after 5-10 years when the families simply run out of puff,” says Chok, who formed Family Action Support Team (FAST) with three other families in the Palmerston North area, with a variety of disabilities.

Chok visited Canning in Canada to research a successful CAPRE (Community Association of People for Real Enterprise) model and the group started four micro-businesses that tapped into the passions and the skills of their children.

He says the past 11 years have been an amazing journey for all four children and even though not all businesses are still going, the work has morphed into new opportunities.

One of them still runs a business, while one of the other participants has worked his way through script writing courses and hopes to get employed with Peter Jackson.

“And they are all living independently.”

Chok now runs two-day workshops across the country to help families get started and travels around the world to find new innovations to help people with disabilities.

Coming from the corporate world, Chok says he was mainly focused on the businesses making a profit and being viable in the traditional sense, but soon discovered that the micro-business model had very different goals and success milestones.

“I was looking at it completely the wrong way and

9

a lot of families do, until I realised that this microor café for young adults with a disability, and have business model needs to be about the total wellstarted by purchasing a coffee cart, in which two being of the individual,” says Chok. young adults sell coffees, cold drinks and food, “Why do most of us do the job that we do? Because supported by one carer, at community events and at we follow our passion. So why don’t we let our a road side fatigue shop. children follow their passion?”

“We are hoping the people of Whangārei are ready He says that many families trying to get and keep for it,” says Alison Faithful, who hopes the cart will their child into employment are struggling and secure a permanent spot in town soon. are stressed and that some employers also find it Lawrence Chok and Workbridge’s Grant Cleland are challenging. both encouraged by the growing number of success “For many it feels like they are stories in the disability sector, banging their heads against the but the latter says the education wall,” says Chok who is clearly system needs to do better to frustrated that the Government prepare people with disabilities spends millions on securing for a working life. supported employment but “Schools do a lot of planning does not encourage microfor transition out of school, businesses, for example by but it does not often lead raising the amount a person to employment. Instead the with a disability can earn before school transition often leads to they lose their allowances. a day service option, because Canadians are ahead of their biggest block is access to Aotearoa as the individual’s employers.” micro-business can earn as To s h ow s c h o o l s w h a t i s much as $9,000 per annum Lawrence Chok possible, Workbridge last year before it affects the individual’s piloted Z in schools, where supported living allowance. students in Special Units from In the model that Chok shares Papanui and Riccarton High with families he advocates for Schools in Christchurch could working smarter, not harder. apply for four internships with Z “Families need to learn to use Energy. This included students the three Os: Other People’s with learning disability.

Time, Other People’s Money The students who might and Other People’s Services.” normally have struggled to He says there are plenty of find employment completed a people in the community 12-week internship which led who want to support these to a Service IQ Level 2 Retail kind of micro-businesses, and Certificate and for one of the sufficient financial support student resulted in a full-time available among different job. agencies, once you know how The trial has been so successful to use the system and access that it is now extended to the funding.

Auckland and Dunedin.

Chok says that the positive Cleland says that some schools changes he has seen in the Grant Cleland - Workbridge a re b e t te r t h a n o t h e r s i n young people he has worked preparing their students for the with have been phenomenal. “Once you get workplace. The aim of our work in schools is to create total engagement of the individual, they grow in a pathway into employment for disabled school confidence, learn new skills and they walk differently students, with employers who are already employing and talk differently.” the jobseekers Workbridge work with.

Chok is the first to admit that a micro-business is not “We think more students need to get the right the only pathway for people with disabilities to lead learning support to prepare them for employment. a full life, and says it may not suit every family.

With Z in School the schools were able to teach the The Te Mahi Trust is one example of families getting Service IQ Level 2 Unit Standards to reinforce the together to create a micro-business when Rachel Hill learning in the workplace,” says Cleland who himself and Alison Faithful in Northland were grappling with grew up with a disability but had parents with high their children leaving school. expectations and willing to challenge the status quo.

The Trust has a vision to run a catering business One company that is proactively trying to fill that gap

CHAT 21 | Issue 76, Summer 2018

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is Kilmarnock Enterprises, a Christchurch business that employs differently abled people and aims to change attitudes around people with disabilities.

The company was founded 60 years ago as a protected workshop but has evolved into a complex, thriving business that focuses on enhancing the skills of their workforce.

As a registered charity, all profits are pumped back into Kilmarnock Basecamp, where the company provides education, health, and skills training for its employees.

“Our staff learn more skills, which means we get more adept staff who enable us to be more successful.

It’s a win-win situation,” says Tim Jones, General Manager Growing Good at Kilmarnock.

“We don’t look at the things they can’t do, but find what they are good at, what work they enjoy and then try to build on those personal skills,” says Jones.

Last year, the Kilmarnock Academy was established to help graduates find meaningful, sustainable open employment outside of Kilmarnock.

“Previously, our employees came to us, and more often than not, stayed in our employment till retirement,” says Jones.

“But we now wish to only be part of their journey, and not the destination. With the right training, support, and encouragement, we can all achieve incredible things.”

Workbridge boss Grant Cleland says that his

organisatoin does not want to use subsidised wages as an incentive to secure a position, but strives to have all their clients in “open employment” which means the same conditions, responsibilities and pay as their colleagues.

“Probably less than one per cent of our clients have some sort of subsidy for their wages to entice their employer to take them, but all the others are employed simply because the employer wants them for their skills.”

The chief executive says New Zealand still has a long way to go and lacks an employment-focused national strategy that Australia and other countries have adopted.

“We still have a welfare strategy where people think about losing benefits instead of thinking about the skills and strengths people with disabilities can offer the work force,” says Cleland.

“Until we change that policy and mindset with families and at Government level, we will continue to create a lifelong dependency.”

If you want to share your own employment story with our readers, please email editor@nzdsa.org.nz

Nathan Owre and Callum Boyd working in the Te Mahi coffee cart

Chasing that dream job

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Supported employment services

Community Living Trust (Waikato)

Numerous services around New Zealand provide opportunities for people with Down syndrome and other disabilities to get employment. Here is a list of providers Chat 21 was able to locate.

Creativeworks Employment Service (Christchurch)

Abilities Incorporated (Auckland)

Abilities Incorporated employs people with disabilities. www.abilities.co.nz

Able Pet Care

Able Pet Care is a registered charity and social enterprise that provides quality pet care services in our communities. Our pet care team are people with a disability that are trained, capable, trustworthy people, keen to help you and your pet. We provide services in Wellington, Auckland, Rotorua, Blenheim and Nelson. www.ablepetcare.nz

Brackenridge (Canterbury)

At Brackenridge, people are our priority, supporting people with learning disabilities and autism to create and lead their lives, their way. Fantastic normal everyday lives where people are included as valued members in our community and live happy and fulfilling lives. www.brackenridge.org.nz

Career Moves (Waikato)

Career Moves is a dedicated,stand-alone, Supported Employment service. It is pandisability and also supports people with longterm injuries, such as brain and spinal injuries. www.careermoves.org.nz

Catapult Employment Services Trust (Canterbury)

C a t a p u l t E m p l oy m e n t S e r v i c e s i s a n employment service for both employers and jobseekers, that has been helping Cantabrians into employment for over 10 years. We have employment consultants and offer counselling around anxieties with employment. www.catapult.org.nz

CCT (Otago)

We support people with intellectual disabilities and/or Autism Spectrum Disorder to live in their community. www.cct.org.nz

CHAT 21 | Issue 76, Summer 2018

Community Living supports 100 people to obtain real meaningful work or to gain the skills to enable them to get a job. www.communityliving.org.nz

Creativeworks provides support to people with experience of a mental illness or disability to find employment and then supports them to maintain this for at least six months. gbateman@creativeworks.org.nz

Disability Resource Centre Hawkes Bay Trust

We work to promote opportunities and facilities for the independence, mobility, and recreation of people with disabilities as well as providing occupational, social and personal opportunities and facilities. www.drchb.org.nz

Emerge Supported Employment Trust (Wellington)

Emerge Supported Employment Trust is a notfor-profit organisation which provides a range of professional supported employment and transition services for people with disabilities in Wellington. www.emergetrust.org.nz

Enrich+ (Te Awamutu)

Enrich+ supports individuals to have a ‘life like any other’. Through education, employment and empowerment, we help each person to be a real part of the communities of their choice. www.enrichplus.org.nz

Framework

Framework delivers community based mental health and intellectual disability services in greater Auckland from strategic locations throughout the city. Paramount among these services is community support, supported employment, participation and inclusion. www.framework.org.nz

Geneva Elevator

Geneva Elevator is a specialist consultancy service offering a wide range of employment, training and support options to clients with diverse needs in Whangārei, Northshore, South Auckland, Wellington and New Plymouth. www.genevaelevator.co.nz

HLC Employment Services (Levin) www.hlc.ac.nz

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IDEA Services Ltd

IDEA Services provides residential, vocational, behaviour support, supported employment, supported living and other support to people with intellectual disabilities throughout New Zealand. www.ihc.org.nz

ImagineBetter

ImagineBetter has a National reach around Aotearoa and is active on a number of fronts including but not limited to providing a range of supports, workshops, training and resources directly to families of disabled people. www.imaginebetter.co.nz

Inclusion Aotearoa (Palmerston North)

Inclusion Aotearoa supports families searching for ways to support their children/siblings to have a good life. www.inclusionaotearoa.com/

LR Training & Development

LR Training & Development provides career advice and guidance for people who face barriers to employment including health issues, injury and disability. www.lrtraining.co.nz

Manaaki Ability Trust (Hutt Valley)

Manaaki Ability Trust provides services that include transition from school, vocational support, community participation and centrebased and facilited programmes. www.manaakiabilitytrust.org.nz

Manawatu Supported Living Trust (Options)

Options is a supported living agency, based in Palmerston North, which is committed to delivering services and supports in a manner that fits each person’s needs and aspirations. www.options.org.nz

Marian Galvin

Student Transition Services Auckland Region marian@realworldliving.co.nz

Matea Trust (Auckland)

On a rural block in Dairy Flat, just north of Albany, we provide employment opportunities for men with intellectual disabilities in our firewood business. We also offer work experience opportunities to students preparing to leave school and enter the workforce. www.mateatrust.co.nz

Supported employment services

Poly-Emp Employment and Advisory Service (Auckland)

Poly-Emp Employment & Advisory Service is a Charitable Trust that assists people with learning disabilities to find paid employment and reach their full potential in their chosen career. www.poly-emp.org.nz/

Southland disAbility Enterprises

The overriding objective of Southland disAbility Enterprises Ltd is ‘to increase the participation of people with disabilities in employment and in their community’. www.sde.org.nz/

Supported Employment Agency Trust (Rotorua) www.supportedemploymentagency.org.nz

Village Community Trust (Workstar Nelson)

WO R KSTA R i s a s p e c i a l i st S u p p o r te d Employment Agency that has served the Nelson economy well for over twenty-five years servicing over 1500 people. Our professional employment service provides free ongoing support. www.workstar.co.nz

Whanganui Disability Resources Centre (Whanganui) The Whanganui Disability Resources Centre offers a disability information service, advocacy, supported employment service, short-term hire of wheelchairs and other large items of equipment, and sales of aids and equipment. www.whanganuidrc.org.nz

Workbridge

Workbridge is the largest New Zealand owned employment agency for people with a disability, injury or illness. Over the past decade, Workbridge staff have arranged over 30,000 jobs for disabled people. Each year around 1,800 employers provide these jobs across a range of industries. www.workbridge.co.nz

Work Opportunities (Otago)

We are a Supported Employment Service Provider in Dunedin. www.workopportunities.org.nz

Workmates Supported Employment

Workmates Supported Employment is a charitable trust that provides a completely FREE supported and employment service in the Porirua and greater Wellington region. www.workmates.co.nz

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Christmas Presents The days leading into Christmas can be stressful at the best of times.

The school year is wrapping up, so you have to juggle your childcare and work, where your boss wants everything to be finished before Christmas as if the world will end on December 25.

Throw in the usual tension about family gatherings, planning your holiday and family dinners and the pressure of finding the right present for your child might just become an afterthought or push you over the edge….

So to help you with this final part, which of course is the only thing your kids worry about, we have called on our wonderful NZDSA community to help you with some ideas and suggestions for your Christmas shopping.

rson ter gh, Glit s”, says Liz Ande u o D , y s a Cl me Crafts, ing that makes a h t !

“Or any phones d a e h d goo er,” one and t it for my daught h p I , d Ipa withou n’t be “Would aat da te K in L s y a s

Water Pistol

ixon.

ryn D ys Cath a s ,” o n a na

uffle Ipod sh to lose than er “Cheap r ut butte t. n a e p f a li C ar o Large j ent ever”, says A res

“Best p

ime Family T r Togethe

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n Camero ys Lisa a s s ,” e e l it i r t Magna- e, but still a favou iv s n “Expe , r skills” irate p or moto f p d u o o p g Po and warding “Fun, re tt e ne Burn says Dia

line y Fryer.

Trampo sie yet,” says Luc res

“Best p

r. doll h baby ays Angela Harpe t a b e l l le,” s Coro estructib d

“Fairly in

CHAT 21 | Issue 76, Summer 2018

Portable Speaker

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Books

Watch l a t i g i D CDs & DVDs

Wetsuit, Goggles

Bubble Machin e

Barbie Dolls

Duplo or Lego

Microphone

Board Games Conce rt Ticket s

Slime

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Transformed disability system kicks off

By Jacqui White

Every person with a disability in the Midcentral Region, (the area around Palmerston North) on October 1 became part of the newly transformed system 'Mana Whaikaha' based on the Enabling Good Lives (EGL) approach.

The principles of EGL say that disabled people and their whānau can choose to increase the choice and control they have over their lives and supports.

It’s been something that disabled people and their families have wanted for many years and the process to see this new change come about has been led by disabled people and their families.

Over recent months in Canterbury, a Regional Leadership Group for Enabling Good Lives has been elected. It is made up of six disabled people, three family representatives and three provider representatives, as well as representation from Mana Whenua and Pasifika peoples.

Our role is to prepare disabled people and families in Canterbury for the system transformation that we hope will be coming to our region in the next few years. Currently in Canterbury, it is just school leavers who can have the benefits of more choice and control over their support services. But once the new system begins in our region, every person with a disability and their family will be able to increase their choice and control over their lives, supports and services if they would like to.

We all have different experiences in finding out about and using the supports that are needed for you and your family to live a good life.

Maybe you have found that the capability built into you by the disability support system is mainly to just tell and retell your worst day over and over again in the hope you might get some funding to use – only within the particular rules of how that funding can be used.

Maybe it has been hard to find out what is available.

Maybe you have had the opportunity to develop your secretarial and form filling skills as you have sought to tick all the boxes with the relevant government agencies.

There will be some changes within the new system that will provide a different experience for families.

Firstly, at the point of diagnosis, families will be welcomed into a supportive community where their hopes and aspirations can be developed in their family life through the types of supports that they choose.

By having a ‘Connector’ of their own choice to walk alongside the disabled person and the family, they will have easy access to information when they need it and in a way that makes sense to them.

The connector helps the person and their family to find out all that is available as well as help in thinking of ways that the family’s own strengths can be best used to raise this child. This connector will liaise with the funding team made up of those representing the various government ministries and those making the funding decisions.

The disabled person and their family can decide the ways that the support is going to be most helpful as well as who is going to provide it.

There are a huge range of choices, including to manage all of this yourself, or have the support of an agency to manage employing people and paying for supports.

M a n a Wh a i ka h a i s t h e n a m e o f t h e n ew l y transformed system in the Midcentral Region. You might like to have a look at their new website, www.manawhaikaha.co.nz or Facebook page facebook.com/ManaWhaikaha.

The system transformation is being established as they go, using a try – learn – adjust model.

The Whānau Representatives on the Regional Leadership Group plan to keep on meeting people and building our database, so that we can begin to communicate with you and give you the opportunity to let us know your ideas so we can feed them to the Regional Enabling Good Lives Leadership Group and onto the National Group.

Please contact us on our email: canterbury.family. rep@gmail.com. We have a monthly email update to keep you up to date on what is happening in Canterbury.

“Disabled people and their whanau can choose to increase the choice and control they have over their lives and supports."

CHAT 21 | Issue 76, Summer 2018

Jacqui White is one of the whānau reprentatives on the Regional Leadership Group in Canterbury.

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A Magazine By People With Down Syndrome, For People With Down Syndrome.

The lucky few

Dan and his families tattoos

By Dan Tucker Dan Tucker has congenital heart condition and his heart stopped earlier this year.

Hi my name is Dan. I am 25 years old.

On 18 January this year, I died for the first time. I gave my family a very big scare.

While I was still in hospital one of my sisters asked Mum if she would get the Lucky Few Tattoo. She also asked my other sister.

When they decided to go and get one done after I

Down Write Brilliant

was out of hospital, I asked if I could have one too. So we all went together and got them done.

I was very brave and it didn’t hurt too much.

Getting the tattoo is my greatest thing ever because other people need to believe in themselves.

The three chevrons mean love heart and soul.

I have a loving mother and family who do care about me.

By Dan Tucker

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Peter outside Pomeroy's

Working at the pub

By Andrew Oswin

Chat 21’s roving reporter Andrew Oswin interviewed Peter Rees, a young man with Down syndrome from Christchurch, about his job.

What is it you like doing at your job at Pomeroy’s?

Serving out the food and the drinks to the customers.

When did you start working at Pomeroy’s?

Ever since before the earthquakes.

Where is Pomeroy’s?

Pomeroy’s is located on the corner of Kilmore Street and Fitzgerald Avenue.

Why is it important for people with Down syndrome to get paid work?

It is very important because it is a major part of someone’s life.

Hard at work!

Down Write Brilliant

How did you get the job at Pomeroy’s?

Well it’s a very funny story, actually. One day, Dad and I went to the pub and had a few drinks. But the beer that I had was very strong.

It was called Epic Armageddon, and I got a bit drunk, and I walked up to the owner of the pub and I asked for a job and I got the job.

02

Abigail (centre) with two of her colleagues, Mamie Hazeldine (left) and Dee Chapman (right).

My job

By Abigail Knight This year in April, I started my very first paid job at PHD Media, which is a large advertising company for TV, Radio and Internet and is located in Mount Eden.

I was asked to come in for an interview and I remember feeling quite confident meeting my employer as they were very friendly people.

Mel from PolyEmp accompanied me to my interview and helped me with all the paper work. I was so excited to be starting work in my dream job. My position is an Office Assistant working for 4 hours, from 8:30am to 12:30pm, Monday to Friday, with lots of jobs to do.

Every morning, I sort out the morning mail, restock the snack cupboard and the tea, coffee and milk in the kitchen and tidy it up.

As well as that I tidy the stationary room, IT cupboard and the meeting rooms. I also help out with Reception, refilling printer paper and putting away Countdown and stationary

Down Write Brilliant

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orders (my favourite job) and I water the plants every Friday. The PR team also call on me when some extra help is needed. One of my important jobs is making the appointments for the staff massages which we are very lucky to get at our work.

When I finish work on Tuesdays, Thursdays and Fridays, I walk to the Medi Strength Gym to do my exercises.

It is really convenient for me because it is right next to my work.

Mum takes me to work in the mornings, on her way to work. After work I catch a train to New Market and then a bus to get home.

I like the jobs that I do and it’s the type of work environment I like working in.

My colleagues I work with are very helpful and they always tell me I do an amazing job of keeping everything tidy and getting my tasks done. When I first started my job, I had a list of tasks that I had to work through. Now I don’t need the list of tasks, because I know what my jobs are and I get them done quickly, so I can add more jobs.

I feel like I have a new work family.

Andrew receives Certificate of Membership

By Andrew Oswin Early this year I received a Certificate of Membership from the DSI (Down Syndrome International) which made me feel very happy and proud.

It had been a great surprise for me that it got posted through Royal Mail.

It is a United Kingdom-based international charity that comprises a membership for individuals and organisations who are from 136 countries to committ to improve the quality of life for citizens with Down syndrome globally to promote their right to be acknowledged and inclusive as valued and equal members of their communities.

At one of the STRIVE funshops I attended, I got asked to take the opportunity to represent New Zealand, for people with Down syndrome to participate in a

Down Write Brilliant

online forum for the Down Syndrome International and I said, “Yes that will be a great opportunity for me to represent my country,”.

I contribute a lot and we get to discuss issues that affect other people from across the world such as having access to healthcare, going to school, finding a job and how we live in society.

We acknowledge each other by saying, “Happy World Down Syndrome Day,” on 21st March every year.

Being involved with the DSI makes me feel that having a world with Down syndrome tells us how important and special we are today in this generation.

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President's pen Before introducing myself, My roles as a mother of a I would like to thank and child with DS and a midwife acknowledge Shelley Waters have collided together to the outgoing President for create a particular interest her endless commitment to in Pre-natal screening for and positive representation Down syndrome and I am of the NZDSA. passionate around the ethics Not only has Shelley held of screening. the NZDSA President role I wa n t to s e e t h a t t h e for the past six years, she rights of women to be fully has also been involved with informed are being upheld her regional committees so that they are able to make for most of her daughter decisions around screening Rochelle’s life, both in the Kim Porthouse with her sons Brendon (middle) and Chris. that are based on wellWaikato and in Canterbury. rounded information that In her role of President of the NZDSA Shelley provided respects their values and not only on information much behind-the-scenes support to the staff of our that is too often a one-sided, heavily medicalised organisation, which was truly appreciated, and her view. I advocate for improved training of the medical leadership nurtured a committee that was able to profession so their knowledge is also well rounded work harmoniously together, which is an attribute and considerate of the impact they have on expectant that I will strive to continue. I am pleased to have parents. the support of Shelley on the committee for the next I contributed to the article in the last issue of CHAT year as she continues her Zone 5 representative role 21 and as mentioned at the end of that article we for one final year. are keen to hear your stories, experiences and views Kim Porthouse, NZDSA President around screening. You can email us at editor@nzdsa.

I am Kim Porthouse, your newly elected President of org.nz the NZDSA. I have been on the NZDSA committee Recently Brendon was nominated by the Wellington for the past six years as the Zone 4 representative, DSA to attend a Youth Development Camp hosted holding the role of Treasurer and have been involved by the NZDSA. This camp was for individuals with with my local DSA for most of the past 18-19 years, higher needs and we were privileged to be offered and also involved with the NZDSA for projects on a placement. and off during that time.

The event was sponsored by funds raised by Southern I have two sons, my oldest son Chris (23) has left Stars for this purpose and I thank them deeply for home but he and his fiancé live just a 10-minute walk enabling such an event. I am also so grateful to the away. My younger son Brendon is 20, he has Down NZDSA staff and youth support workers who gave syndrome. He lives at home with me and attends so freely of their time and support, it was a truly the Learning support centre at Waiopehu College in enriching experience for both Brendon and I. Levin. We live in Ōtaki, on the Kāpiti Coast and have Although there were a few wobbly and challenging lived in this region for 28 years. I am a midwife and I moments, I was generally pretty proud of the way work at the Primary Maternity unit in Levin.

Brendon coped with being out of his comfort zone It is my philosophy that diversity in our society is and his normal daily routines. I’m sure this was helped important and that all individuals with a disability a lot by being amongst peers in the very supportive should be respected and viewed as valuable and environment that was created by everyone involved. contributing members of their community.

He got to participate in activities that would I view being involved with both my local DSA and normally be out of his reach such as rock climbing the National DSA as a way I can foster the support and abseiling, so he was very proud of himself and of other parents of children with Down syndrome he keeps going back with smiles on his face to as well as contribute to the advocacy of individuals watch over the videos on his iPad that captured his with Down syndrome to be valued and participating achievements. members of their community.

I gained so much knowledge and support from being able I want to see every person with Down syndrome to network with the other parents that attended, given opportunities that will enrich their lives and I feel truly motivated and inspired – just what I need as I help them to reach their potential. I want to see every look ahead to next year and face Brendon’s last year at parent feel connected and strengthened. school and a year of transition into the post-school world!

President's pen

21

Meet the other NZDSA Committee Angela Hawke, Representative for Zone 1 – Northland

My husband Bryan and I have four children, Amie (22) is currently in her second year of Teachers training collage, Shayla (17) is training to become a Chef, Maia (13) is currently in her second year of intermediate and is mainstreamed and also attends classes to suit her needs, she will also be doing a third year at intermediate and Trent (12) will start high school next year. We live in Whangārei and I have been a part of the Northland Down Syndrome Support Group since Maia was a few months old. I’ve been on the Northland committee for almost as long and I have been on the NZDSA committee for the past four years. Our family, whānau and friends treasure the things Maia has achieved and taught us along her journey so far and we can't wait for many more lessons to come.

Diane Burnett, Representative for Zone 1A – Auckland

I live with my husband Brad and our three children, Jada (7.10yrs), Marlowe (5.7yrs) and Ivy (3.8yrs). I have been involved with the Auckland Down Syndrome Association since Jada was one, initially as Treasurer, then as Outlook Editor from 2013-present and also as a committee member. I joined the New Zealand Down Syndrome Association as the Auckland Zone Representative earlier this year. I am on both committees so that I can be more involved with our wider community, can stay in the know and up-to-date with what is going on locally and across New Zealand in education, health, employment, recreation and so on, and to help support existing and new initiatives.

Gwen Matchitt, Representative for Zone 2 – Coromandel, Waikato, Bay of Plenty and Taranaki

Kia ora, my name is Gwen. I am married to Lance and we have four children, Cynthia (28), Morgan (24), Jayden (22), Bailey (11) and we have one grandson, Karmelo (3). We live in Kihikihi, Te Awamutu. Bailey currently attends Pekearu Primary School and is fully mainstreamed. She is currently being transitioned to Te Awamutu Intermediate in readiness for next year. She attends a before and after school programme and is fully immersed in our wonderful community.

I represent Zone 2 on the NZDSA committee and I have been the representative for this area since 2012. Being part of the NZDSA is a journey of knowledge, not only nationally, but also internationally. I became part of the committee to educate myself on all aspects of the disability sector, to enhance learning so I can support, not only my daughter but the wider community.

Geraldine Whatnell, Representative for Zone 3 – Whanganui, Manawatu, Gisborne and Hawke’s Bay

Hi, I am a mother of two beautiful daughters, Zeta and Kiah, and an older sister to Mark. Mark is 18 months younger than me and has Down syndrome.

He has been an inspiration to me throughout my life. I am a clinical nurse specialist lead developmental disabilities at Palmerston North hospital, I have been a disability nurse for 35 years and I wouldn’t have it any other way.

I am proud to be able to represent Zone 3 for the NZDSA. I am very passionate about the health needs of people with Down syndrome and developing education around this.

CHAT 21 | Issue 76, Summer 2018

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Kerry Ryan, Representative for Zone 4 – Wellington and Wairarapa

My name’s Kerry Ryan. Alan and I have three children, Douglas (10), Dallas (8) and Laura (6). Dallas has Down syndrome. We have lived in Wellington for 13 years where I have been on the Wellington Down Syndrome Association committee for several years and I have recently become the Zone 4 representative on the NZDSA governance committee. I am excited about being involved on a national level, representing the Wellington region and providing a voice on the experiences of primary school aged children with Down syndrome. I believe in inclusion for everyone and working with people to encourage and support them to be the best person they can be.

This is the best outcome, not only for the individual and their family, but for society as well.

Shelley Waters, Representative for Zone 5 – Ashburton and all areas above Ashburton

I am married to Jeff and we have three daughters, Rochelle (23), Jess (22) and Gemma (20), and we live in West Melton, Christchurch. Rochelle introduced us to the wonderful world of Down syndrome 23 years ago and I have been a member of the NZDSA ever since. I am the Zone 5 Representative on the NZDSA Governance Committee and the Secretary for the Canterbury Down Syndrome Association. I have also been a past Committee Member of the Waikato Down Syndrome Association, as we lived in Hamilton for five years. I feel very privileged to be part of the NZDSA and all the wonderful work that goes on behind the scenes. I really enjoy working with the team here and meeting new families whenever the opportunity arises, and I look forward to continuing to contribute to the NZDSA's Mission and Vision to ensure people with Down syndrome are valued and respected members of society throughout their lives.

Averill Glew, Representative for Zone 6 – All areas below Ashburton

Hello I am Averill Glew from Invercargill.

Our youngest Jacqui 18 has Down syndrome.

I have been the NZDSA national committee zone 6 rep for the last 6years.

I enjoy meeting, connecting & supporting families in our communities who have a family members with Down syndrome.

Meet the NZDSA National Committee

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Easy as riding a bike

By Glen Jelley

Jessica was our first child of 3 and we knew at the 19 week scan that she was going to have Down syndrome so had a bit of time to prepare and research.

She came into the world screaming her lungs out like any other child with people rushing around testing this and that. It was a good 15 minutes before I was able to hold my beautiful baby girl. The next few days consisted of xrays, heart scans and blood tests. The results were encouraging with a small hole in the heart that they Jessica on her bike were confident would close.

We were able to take her home at around 6 days.

We were home 3 days when we recieved a phone call from a parent of a child with Down syndrome that I used to babysit when I was in my teens. They started off with congratulations then proceeded to tell me about everything Jessica would never do, one of which was ride a 2 wheel bike. Not sure why that stuck in my head but it did.

We were very lucky with the support services we had and got a lot of great advice. Not all of it was relevant but our thoughts were to listen to everything, take what works for you at the time and put the rest in the memory banks for later.

We had her in a walker and jolly jumper from the time she could hold her head up herself. Once she could sit up by herself (around 12 months) we put her on one of those wee 3 wheel plastic doon buggy bikes in the house. Once she got the hang of not running over her feet, she was off. We also took her on lots of bike rides behind our bikes on a half wheeler I adapted to hold a car seat. I believe this helped with her balance. She loved it but would often go to sleep.

From there at around 2 and a half (she was just starting to walk) we went to a balance bike. She kept going back to the doon buggy as it was easier so big mean dad put it away in the garage. With a bit of work from Mum and Dad on the front lawn she soon mastered the balance bike and got up way too much speed for my liking as they dont have brakes.

CHAT 21 | Issue 76, Summer 2018

She stayed on the balance bike till she was about 4. We then stepped up to a 12 inch 2 wheeler pedal bike with training wheels. Looking back I think this is where we made our biggest mistake. We should have persevered and gone straight to the pedal bike with no training wheels, but as we were both working full time, was limited and this was the easy way to get her on the pedal bike. She stayed with the training wheels for about 2 years.

We did lift them up and tried briefly a couple of times to take them off without success.

When she was around 6 or 7 we were at Miller's flat camping at Christmas time for two weeks so we decided to make a concerted effort to get those training wheels off. I took the training wheels off and we went over to the local school rugby field. Now I'm not going to say it all went smoothly and she was off and riding in a day, far from it. There were crashes, tantrums and plain old sitting on the ground and refusing to get on it. But with a bit of good old bribery and determination on her part we got her riding by the end of the holidays. Just by running along behind her holding her then the good old yes Jessica i'm holding you (but not really) until she was off on her own.

Now at the age of 10 we are all out riding the trails.

She is now on an 18 inch bike with gears. We ride around 8 to 10 kms at a time. That is more limited by her younger brother. Our big aim this year is to bike 13kms from the camping ground to pinders pond, spend the day swimming and ride back home again.

This year she is doing the bike section of the quadrathon at her school. Last year she did the 2km road run with her TA. What we have learnt and the moral of the story is that given the same opportunities and a little extra pushing/encouragement (with some thinking outside the box)as a typical child they might just surprise you by what they can achieve (subject to what the doctors may have told you).

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Speech Therapy: 5 tips for pre-schoolers

By Fiona Kenworthy, Clinical Director and Specialist Paediatric Speech-Language Therapist at smalltalktherapy.co.nz For the last ten years, I’ve specialised in working with children with Down syndrome. I’ve seen the way ‘early intervention’ yields long-lasting benefits for the child and their family. ‘Early intervention’ for children usually means the first five years.

They are the golden years for setting kids up for how you want them to thrive.

Here’s my five top tip gems for getting a great start:

1. Aim high, have fun!

Research on families with a child who has a sole diagnosis of Down syndrome has found them to have essentially the same quality of life potential as everybody else.

Adjustments to priorities and routines must be made of course. Have high expectations, seek support from others and have as much fun as you can. Which is pretty much the same for kids everywhere.

2. Get active early!

It’s never too late to start speech therapy. But the more time and energy you can invest in the early years, the bigger the pay off.

Six months of age is a great time to get going. Tap into the critical development periods, when the brain is geared for learning. Get networked in with other families of children with Down syndrome.

Build genuine partnerships with the right team of skilled, caring professionals who support, inspire and empower you. Put time aside for home practice and courses. And speak up when you need to – you know your child better than anyone, so you are their best qualified advocate.

Speech Therapy: 5 tips for pre-schoolers

3. Keep the ear infections at bay!

Eighty percent of children with Down syndrome are prone to recurrent ear infections. It may sound minor, but hearing impairment has a significant long-term impact on speech and language development, with flow on effects to all areas of life and learning.

Some children won’t show obvious symptoms. Ask your GP to monitor them regularly.

4. Have fun with new words every day!

Whether you sign, say, or act something out, it all adds to your child’s vocabulary. Children with Down syndrome sometimes struggle as they don’t always perceive or recall spoken words. Children who learn to repeat words accurately are better at taking in new vocabulary. And the larger their vocabulary, the better their spoken language and long-term communication ability. This also helps set them up for literacy and school.

5. Attend an SLT Hanen workshop

This teaches the basics of human communication why and how children communicate. Children whose parents use Hanen produce more spoken and/or signed words.

It’s also great for your relationship with your child.

Attend a Makaton workshop too. Signing is a useful way to relieve early frustration, teach children the foundations of language, and provide a stepping stone to talking. Sign up for these courses while your little one is between 6-24 months to get the most out of them.

Every parent will be faced with an avalanche of decisions about their child throughout their life. But taking these first proactive steps will put you and your child in the driving seat.

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Adventure, camaraderie and dancing at NZDSA Youth Development Camp

By Coen Lammers

Eight young people from all corners of New Zealand last month enjoyed a weekend of adventure, camaraderie, arts, dancing and of course plenty of finger-licking food at the NZDSA Youth Development Camp.

The young adults ranging from 18 to 32 years old were invited by the NZDSA to attend this event at Vaughan Park in Long Bay, north of Auckland.

The venue provided a stunning beach-side backdrop and was situated right next to the Marine Education and Recreation Centre (MERC) where the participants took part in a host of adrenaline-filled activities and where they were asked to get out of their comfort zones.

For many of the participants, the airplane ride into Auckland already provided a highlight in itself.

Aside from Melissa Hoffman and Emily Leech, who only had to drive over the Harbour Bridge, the other guests flew in from far and wide.

Katie Beamish from Dunedin and Invercargill’s Jacqie Glew represented the deep south, with James Young from Christchurch making up the South Island crew.

CHAT 21 | Issue 76, Summer 2018

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Brendon Porthouse flew in from ĹŒtaki on the KÄ pati Coast, along with his old friend Harry Elsworth, while David Gunn represented Palmerston North.

Some of the regional neighbours knew others on the camp, but most of the participants met for the first time, and they soon bonded quickly to support each other on the different activities.

After an opening night of introductions and a fun activity experimenting with robot toys, the team really went to work on Saturday morning when the trainers at the MERC were waiting to put the young participants through their paces on the climbing wall.

The youngsters initially explored the small climbing wall to find out about how to use their arms and legs, but many of them could not wait to get into their climbing harnesses and onto the ropes.

Girl power came to the fore at the camp as the young ladies from the South were leading the way, tackling the first climb like spiders.

Inspired by Jacqui and Katie, the other more reluctant members of the team soon followed, and once they got their first taste, many of them could not wait to

go up a second and third time.

The next challenge of the adventure was to abseil down the same 10-metre wall and again the women were leading the way.

Some of them even stopped mid-decent to sort out their hair and pose for a photo.

Standing on top of the climbing wall can be an intimidating place for anyone, even without a fear of heights, but the expert instructors at MERC managed to assist all of their young participants to slide safely down wall, even if some of them were using some unorthodox techniques.

The team and the adults assisting them during the weekend had worked up a sizeable hunger when the fantastic Rapid Relief Team arrived to prepare a delicious lunch of burgers and hot chips.

The temptation was almost too big, and some of the participants initially struggled a bit with a full tummy on the archery course, which was the afternoon activity.

The bows were large and the arrows were flying at

Adventure, camaraderie and dancing at NZDSA Youth Development Camp

27

rapid speed towards the target as big cheers erupted for the arrows that landed close to the bull's eye.

While the young people were busy brushing up on their climbing and Robin Hood skills, the mothers were whisked away for a coffee and some shopping, and treated to a pampering session with some cheese and wine, which some of the parents reluctantly, but gladly accepted.

Once everyone had recovered from the day’s activities, the Vaughan Park chefs put up a wonderful early Christmas dinner, which was a perfect opportunity to make new friends and share the stories of the day.

As with previous camps, the participants were quickly able to get rid of their dinner calories during the traditional disco. The extended play list that represented all the ABBA and Bee Gees classics, as well as the more contemporary Katy Perry and Taylor Swift repertoires, gave everyone an excuse to strut their stuff.

After all that excitement, it was not a surprise that the team was a bit more subdued on the final morning, but the arts session provided the perfect activity and produced some terrific artwork.

After the final lunch, the participants, parents and support crew said their final goodbyes, but vowed to stay in touch to share their memories of all the adventures and new skills they experienced at Vaughan Park.

Young adults who are interested in attending the 2019 Youth Development Camp can contact Zandra Vaccarino on neo@nzdsa.org.nz

CHAT 21 | Issue 76, Summer 2018

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The Vaughan Park Retreat Centre is a wonderful, peaceful place set above Long Bay Beach in Auckland, nestled into rolling hills with views across bush and towards the beach. The accommodation and food was generous and excellent and it was wonderful to meet other parents who also have a very high needs son/daughter.

My son James is 23 years old, has Down syndrome, Autism, Coeliac disease and is nonverbal so it is not often one meets another family whose child has the same diagnosis. For me it was lovely to be in a place where my son was not the most developmentally delayed. I was pampered and my son coped pretty well with all the changes starting with the plane flight, travel in a shuttle van, new peers, food and accommodation. Having head phones on so he could listen to his music helped a lot. When James was asked to do the rock climbing, abseiling and archery he would not participate despite the best efforts of Coen and Glen but I had not allowed James to wear his headphones. The next day he wore his headphones and did wonderful art work for 2 hours. I was amazed and now with the benefit of hindsight how many other things would he do if he could relax listening to his music while doing the activity! So both James and I learnt new things and I loved the company of other Mums/Dads who have children with similar challenges.

Thank you to Zandra and the NZDSA for organising such a great event and if it could be held again for parents with very high needs children with Down syndrome that would be fabulous!

By Kaye Young

Adventure, camaraderie and dancing at NZDSA Youth Development Camp

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STRIVE team finetunes advocacy skills at Auckland Funshop

The STRIVE team clearly had some fun at their Funshop

The STRIVE team came together recently for a Strive Self-Advocacy and Awareness Fun-shop at Vaughan 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 guest speaker Tanya Black and learnt about the rights of Disabled people with another guest 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 Smith 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 the 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, selfconfidence, leadership and advocacy skills, and being a rolemodel to the other self-advocates who will be the future members of STRIVE.” Jess Waters 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 came 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 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.

The STRIVE team hard at work at the Funshop in Auckland

CHAT 21 | Issue 76, Summer 2018

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IHC Book Reviews Just like other daughters

by Colleen Faulkner It's how you love that matters.

Alicia Richards loved her daughter from her very first breath. Days later, when tests confirmed what Alicia already knew--that Chloe had Down syndrome--she didn't falter.

Her ex-husband wanted a child who would grow to be a scholar. For Alicia, it's enough that Chloe just is.

Now twenty-five, Chloe is sweet, funny, and content.

Alicia brings her to adult daycare while she teaches at a local college.

One day Chloe arrives home thrumming with excitement, and says the words Alicia never anticipated. She has met someone--a young man named Thomas. Within days, Chloe and Thomas, also mentally challenged, declare themselves in love.

Alicia strives to see past her misgivings to the new possibilities opening up for her daughter. Shouldn't Chloe have the same right to love as anyone else?

But there is no way to prepare for the relationship unfolding, or for the moments of heartbreak and joy ahead... "So real, so honest...I laughed, I hoped, I cried. It's that good."

Cathy Lamb, author of The Language of Sisters Reader comment: I enjoyed this book and hope it will promote discussion regarding sexuality and relationships. My only reservation was to do with some of the terms used such as “mentally handicapped”.

A major adjustment: how a remarkable child became a remarkable adult

by Andy Merriman Sarah Merriman is just like any other urbane young woman in her twenties.

She has a job in a Central London hotel, a boyfriend, commutes to work on the Tube, eats out, goes to films and theatre. This is all the more remarkable (though not to her) because Sarah was born with Down syndrome.

What's new in the IHC Library?

Her parents having no prior inkling, it came as a huge shock to them that they now had a daughter with a disability. In 1999 her father Andy wrote a frank and moving book, A Minor Adjustment, about the challenge of her early years.

The national publicity it gained saw it become a treasured resource for other families on a similar journey. Now he follows up with the inspirational story of how his daughter, whose favourite expression is `I love my life', has grown up, featured on Michel Roux's compelling Kitchen Impossible series, and is making a life of her own at a time when pre-natal testing is threatening the very existence of people with Down syndrome. Sarah has contributed throughout."

- Book jacket summary

Sexuality and intellectual disabilities: a guide for professionals

by Andrew Maxwell Triska This book provides a concise overview of sexuality and gender identity in clients with intellectual disabilities for therapists, social workers, educators, and healthcare providers.

It captures the social, political, and legal environment of the late 2010s and bridges the gap between research and practice, with engaging case examples drawn from the author’s own practice.

Guidance on everyday issues like dating and sex education is juxtaposed with material on complex, current issues on topics like LGBTQ inclusion and sexual offending.

User-friendly "toolboxes" provide brief guides to practical issues like using trans-friendly language and providing family interventions. Accessible enough for students and trainees, but thorough enough for veteran clinicians, this book explores issues that professionals face in providing competent care through the lens of justice and inclusion.

- Book jacket summary IHC would love to hear from you with your queries and to help find the right resource for you.

Your IHC library team (Phil, Ros, Ann and Michael) on 0800 442 442, email them at librarian@ihc.org. nz or visit the online catalogue at https://ihc.mykoha. co.nz/ You can watch their library video at https:// www.youtube.com/watch?v=AunmBYTIZTM

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NZDSA notices Numicon Kits Calling For Expression Of Interest

Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits for 2019.

Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon the website is numicon.co.nz • • • • •

•

The NZDSA has 16 kits to loan to NZDSA members.

These kits can be used at home or school.

The loan period is from February/March to the end of November.

The NZDSA does require you to pay a refundable bond of $60.00.

The NZDSA will reimburse you the $60.00 bond if the kits are returned clean and complete.

The only cost to you is the courier and handling fee which is $30.00 and the cost of returning the kit to the NZDSA.

Top 10 Maths Applications

The NZDSA would like to know your favourite apps for maths. Please email your list to Jess at hello@nzdsa.org.nz

Thanks

Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year: • • • • • • • • • • • • •

Joyce Fisher Charitable Trust Lottery Minister’s Discretionary Fund NZ Lottery Grants Board Holdsworth Charitable Trust The Trust Community Foundation Thomas George Maccarthy Trust Eastern & Central Community Trust COGS Christchurch COGS Hamilton COGS Manukau COGS Manawatū/Horowhenua COGS Central Otago COGS Whangārei

If you would like to loan a kit, please contact Linda te Kaat at nzdsai@xtra.co.nz or phone 0800 693 742, ext 2.

Rose Award

These awards provide the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email Zandra neo@ nzdsa.org.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”. Zandra will acknowledge the person in CHAT21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories.

Please check it out at facebook.com/NZDSA

CHAT 21 | Issue 76, Summer 2018

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NZDSA resources Cost for members

NZDSA Resources

(Including Postage)

Cost for nonmembers (Including Postage)

Creating A Positive Hospital Experience This resource is beneficial to people with Down syndrome or any intellectual / developmental disability of any age who need to go to hospital for an appointment or procedure.

$10.00

$20.00

We Welcome Your Baby pack This resource provides new parents with support and information. The pack contains: three booklets, 4 leaflets and a DVD.

Free to new parents*

$20.00

Living with Down Syndrome book This book provides information on Down syndrome.

$5.00

$5.00

Recipe book Contains numerous gluten-free recipes.

$5.00

$5.00

Transition To School This DVD provides an overview of parents’ and educators’ perspectives on the transition process. This DVD provides parents with information and advice on how to best make the transition to school.

Contains a DVD and supporting literature.

NZDSA members who have a child aged 3 – 6 are entitled to one free copy of the resource*

$20.00

Plan For the Future This resource provides individuals with Down syndrome and their families with information on how to take positive steps from school into adult life.

Contains a DVD and supporting literature.

NZDSA members who have a child aged 14 – 30 are entitled to one free copy of the resource*

$20.00

Turn the Page with Me This resource demonstrates how parents can share books with their children with Down syndrome to support both their child’s spoken language development as well as developing their literacy skills. It models effective strategies, explains why they work and provides suggestions for choosing appropriate books.

NZDSA members who have a child six years of age or younger are entitled to one free copy of the resource*

$20.00

Learn Through Play and Daily Routines Helping parents and caregivers to support their child’s development through play and routines at home and in their community.

NZDSA members who have a child six years of age or younger are entitled to one free copy of the resource*

$20.00

Dress 2 Impress Learn what to wear and how to wear it. Showing you how to select the right clothes for the right purposes. Contains a DVD and a resource booklet.

Free

$20.00

*Resources available to members outside of age ranges: $10.00 To order one of these resources, please send your order and payment to Linda te Kaat, National Administrator, NZDSA, P O Box 4142, Auckland.

All enquiries phone 0800 693 724 press 2 or email nzdsai@xtra.co.nz.

NZDSA resources

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NZDSA Committee

Contact directory

New Zealand Down Syndrome Association PO Box 4142, Shortland Street Auckland, 1140 0800 693 724

Gwen Matchitt

Kim Porthouse

Angela Hawke

Diane Burnett

President

Zone 1 Representative

Zone 1 Representative

Wellington & Wairarapa

Northland

Northland/Auckland

021 297 0298

027 246 0160

022 034 6475

president@nzdsa.org.nz

northland@nzdsa.org.nz

auckland@nzdsa.org.nz

Treasurer

Kerry Ryan

Shelley Waters

Zone 3 Representative

Zone 4 Representative

Zone 5 Representative

Zone 6 Representative

Whanganui, Manawatū, Gisborne

Wellington & Wairarapa

Ashburton & all areas above

All areas below Ashburton

& Hawkes Bay

021 108 9505

021 046 0482

027 627 3069

027 356 3229

zone4@nzdsa.org.nz

zone5@nzdsa.org.nz

zone6@nzdsa.org.nz

Vice President Zone 2 Representative Waikato, BOP & Taranaki 027 244 4543 zone2@nzdsa.org.nz

Geraldine Whatnell Averill Glew

zone3@nzdsa.org.nz

NZDSA Staff

Linda te Kaat

National Executive Officer

National Administrator

0800 693 724 ext. 1

0800 693 724 ext. 2

neo@nzdsa.org.nz

nzdsai@xtra.co.nz

Regional Liaison Officers

Jess Waters

Zandra Vaccarino

Christel van Baalen

Donna Higgs-Herrick

Sandra Slattery

Auckland Community

Canterbury Community

Taranaki Community

Liaison Officer

Liaison Officer

Liaison Officer

09 527 0060

021 208 8203

027 604 5786

clo@adsa.org.nz

cdsainc@gmail.com

taranakidownsyndrome@gmail.com

NZDSA Membership

Membership charges are as follows: $30 one year Financial membership fee, $50 two year Financial membership fee, $50 one year Affiliate membership fee, $15 one year Self-advocacy membership fee. To obtain full details and a membership form please either email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

Database Updates

The NZDSA would like to update their database. If your details need updating please contact us either by email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

CHAT 21 | Issue 76, Summer 2018

Social Media and Information Officer 021 032 8539 nzdsainfo@xtra.co.nz

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

Coen Lammers CHAT 21 Editor 027 730 239 editor@nzdsa.org.nz

Donations

The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you are able to make a donation please either send a cheque to us at P O Box 4142, Shortland St, Auckland, 1140 or direct credit to ASB 123073 0090784 00 using your surname as reference. If you require a receipt please email us to let us know you have made a donation via internet banking by telephoning 0800 693 724 extension 2 or emailing nzdsai@xtra.co.nz. If sending us a cheque please include your address so a receipt can be posted to you.

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0800 693 724 | nzdsa.org.nz