Buddy Walk 2014 - Auckland Down Syndrome Association

Outlook
Date: April 2014 | Issue No: 59
Contents
Buddy Walk 2014
Hundreds of people gathered at Tahaki Reserve in
Mt Eden on Sunday 23rd March for the ninth annual
ADSA Buddy Walk.
The forecast was for fine spells with a few showers
and a chance of heavy rain but on the day blue
skies and sunshine greeted participants from across
Auckland and as far away as Wellington for a
wonderful fun filled day.
The morning kicked off with music while people
registered and set-up picnic spots around the
reserve. At 9.30am MC Nik Brown from Radio
Hauraki took the mic and introduced ADSA President
Jenny Harkins to officially open the event. Following
on from Jenny, Linda Devereau from Jump Jam
Kidz Aerobix took the stage to lead the crowd in a
dance and fitness warm-up routine to popular music
including Pharrell Williams’ hit single ‘Happy’.
At 10am the countdown began and the 3.5km walk
around the base of Mt Eden and through Mt Eden
NZDSA Awards
p6
Success in School
p9
Social Clubs Calendars
p13
IHC sues MoE
p16
Social Clubs March Events
p22-23
village started. It was a beautiful morning for the
hour-long walk with family and friends catching
up and chatting along the way. At the finish line
the children received a goodie bag and a lollipop
to acknowledge their achievement. By the time
the last walkers came in the day was in full swing
with people enjoying fabulous stage entertainment
including the Identity Dance Crew, from TV1’s New
Zealand’s Got Talent, and the talented NZ singer/
song writer Lisa Wright. Out on the reserve the
kids were having a blast on the field entertainment
including jumping about on the bouncy castles,
riding the merry-go-round and climbing the rock
wall. There was entertainment for everyone and the
farm animals, the big bubbles, the fire engines and
the face painters proved popular with young and old
alike. Continued on p3.
92a Princes Street, Onehunga 1061. PO Box 13385, Auckland. | Ph 09 636 0351 | adsa.org.nz
Photos from Buddy walk 2014.
Local News | p2
Continued from front page. It didn’t stop there.
Throughout the day there were raffles, prize draws,
a lucky dip and silent auction as well as food stalls
and information stands. Of course such a wonderful
day would not happen without the tireless efforts
of the Buddy Walk committee, Christel van Baalen,
Sally Rayner, Samantha Watkins, Louise Gilbert and
Annie Williams who organised and ran the event.
In addition, the support of volunteers including
Mike Rudkins, Diana Court and Brett Cronin, and
organisations including Sancta Maria College,
Dilworth School, the Rotary Club of Henderson and
the Twinkle Child Foundation as well as Rachel Price,
Tracy Elder, Natasha Gould, Antonia Hannah, Jenny
Harkins and the Ferens family, who all helped on
the day.
Thank you also to the generous support from our
sponsors, the businesses and individuals listed
below, for their kind contribution.
Auckland Council – Auckland Fire Station – Jumping
Beans International Limited – Subway Mt Eden and
Britomart – Healthy Life Media Limited – House
of Chocolate – Wai-O-Tapu Thermal Wonderland
– Woodhill Mountain Bike Park – New Zealand
Woman’s Weekly – Stardome Observatory –
Rainbow’s End Theme Park – Skyline Rotorua –
SheepWorld – Waipuna Hotel & Conference Centre
– Numicon – Procon Limited – Wishbone Design
Studio – Scholastic New Zealand Ltd – Skinfood NZ
Limited – Bivouac Queen Street – Alta Bean Bags –
Cadbury – Furniture City – Simunovich Olive Estate
Ltd – Dilmah New Zealand – Around Waiheke Tours
– Soljans Estate Winery – Paradise Valley Springs
– Wendco (NZ) Ltd. – Muffin Break New Zealand –
Miranda Hot Springs – Cup ‘n Cake – Explore NZ
– Jack Link’s NZ Ltd. – Douglas Pharmaceuticals
Ltd. – The PR Shop – Peppin Boutique – Mainly Toys
– Lemonade Design Ltd – Yates New Zealand – AJ
Member Profile
Mary Cole is ADSA’s oldest member.
Mary Cole attended this year’s Buddy Walk for the
very first time with her wonderful caregiver Carol
Urlich, who has cared for Mary since her mother
died about 10 years ago.
Mary is amazing as she turns 66 on 17th May and
she is now ADSA’s oldest member. Mary loves going
to have lunch at the Casino and also the RSA. Mary
lives in Mt Eden with Carol and two students from
Vietnam and China. Mary spends three days a week
at Creative Abilities and is a frequent shopper at the
$2 shop buying art supplies for the art she loves to
do. Mary brings in the washing, makes her own bed
and keeps the house tidy for Carol.
Local News | p3
Hackett Bungy Auckland – Blackstone Group Limited
– Morris & James Pottery & Tileworks – Mt Eden
Cycles – Trilogy - Allways Trackside Ltd – Sanitarium
Health – Agroventures Adventure Park – Steam
Brewing Company – KPMG – Killer Hair – Hungry
Bin – Trio Soy Candles – Parakai Springs – Dalston
Limited – Dave & Maria Fastnedge – Techspan
Group – Shoe Science – Rainbow Springs Kiwi
Wildlife Park – Cerebos Gregg’s Limited – Auckland
Conventions Venues and Events – Beauty Brows
– Blue Lake Top 10 Holiday Park – Blue Star Print
Group New Zealand – Bogaart Dezign – City Cake
Company – Chand Family – Ch’i International –
Cookies for Santa – Crombie Lockwood – Devonport
Chocolates – Envirology – Emma Spicer – Hawkins
Fudge – Heyrex – Indian Summer Restaurant –
Karena Edgeler – Kitson Family, Nina & Steve – Lion
Nathan – Lone Star Rotorua – McDonald’s Melissa
Mills International Psychic Medium – Microlene Water
Purifiers – Nick & Sam Richards – NZ Breakers
Basketball Ltd – NZ King Salmon – Power Hooping
NZ – Printlink, a division of Blue Star Group –
Seedling – SKYCITY Auckland Hotels – Swanson
Pharmacy – Tegel Foods Limited – The Cup Cake
Fairy – The Design Cellar – Tom Tom Bar & Eatery
– Tree Adventures – Tusk Thai Restaurant & Bar
– Valentines Restaurant Lincoln Rd – Vodafone
Warriors – Wilde Records Recording Studios – World
Organics – Zarina Ginai.
Thank you especially to Auckland Council, the
main sponsors of Buddy Walk 2014.
Chairperson’s Report
With summer nearly over there was one very
important fundraising event remaining on the
Auckland Down Syndrome Association’s calendar,
Buddy Walk. Buddy Walk was held on Sunday 23rd
March at the usual venue of Tahaki Reserve in Mt
Eden. We had a huge crowd and the weather
was perfect.
Christel once again organised the Buddy Walk with a
small team, which was a mammoth task. Everyday
Hero pages raised a record amount of money with
over $18,000 recorded on the day, and the pages
are still live until the end of April so you can donate
to any of the families or individuals using Everyday
Hero to fundraise for ADSA.
Christel and Rachel Price were also very busy during
January finalising the new look Education Courses
with the inaugural course, which is now held over
two days, taking place on Monday 24th February and
Monday 3rd March. There were 33 attendees from a
number of schools throughout Auckland including a
school from Hamilton.
I attended the New Zealand Down Syndrome
Association’s Achievement Awards ceremony held
in The Grand Hall in Parliament in Wellington on
the afternoon of Tuesday 18th March. This year’s
recipients were Chris Whitmore from Taranaki,
Katrina Sneath from Wellington and Christopher
Tavite from Dunedin.
The Inaugural Volunteer Award was awarded
posthumously to Val Sturgess who was Secretary
of Auckland Down Syndrome Association for
eight years. Sadly, Val died last year and her
Granddaughter, Georgia Garrett accepted the award
for her.
The celebration of World Down Syndrome Day
was also celebrated with a T4T High Tea (Tea 4
Trisomy 21).
Our new Social Clubs are now in full swing with the
February and March events now behind us, catch
all the photos in this issue. Recreate NZ is doing a
fantastic job of making the Social Clubs a great way
for our members to socialise and make new friends
while having a good time. The calendar of events for
2014 is printed in this issue.
Jenny Harkins
Committee Members
Chairperson & representative on the NZDSA Committee:
Jenny Harkins, 027 4866 028 or 09 536 4468, [email protected]
Secretary: Natasha Gould, 021 226 8954, [email protected]
Treasurer: Angela Owen, 027 605 4496, [email protected]
Committee member & representative on the NZDSA Education Subcommittee:
Rachel Price, 027 781 6714, [email protected]
Committee member: Antonia Hannah, 021 202 1983, [email protected]
Committee member: Heather McBride, 021 586 961, [email protected]
Committee Meetings are held on the first Wednesday of each month at 7.30pm at the Parent &
Family Resource Centre, corner of Spring and Princes Streets, Onehunga. If you wish to present
something to the committee please contact Natasha Gould (secretary) the week prior so that time
can be allocated on the agenda and your attendance confirmed. Meetings for the next quarter are:
Wednesday 2nd April, Wednesday 7th May and Wednesday 4th June.
Contacts | p4
Regional and Coffee Group Contacts
Auckland regional contact:
Christel van Baalen, 09 636 0823 or 021 293 2660, email [email protected] or [email protected]
East Auckland Coffee Group contact:
Francesca Voykovich, 09 272 4148 or 021 333 724, email [email protected]
Central Auckland Coffee Group contact:
Samantha Watkins, 09 533 3272 or 021 068 2826, email [email protected]
South Auckland Coffee Group contact:
Catherine Barnes-Dacey, 09 235 2261 or 027 240 8819, email [email protected]
West Auckland Coffee Group contact:
Kylee Jones-Walsh, 09 817 7036 or 021 462 204 email [email protected]
North Auckland Coffee Group contact:
Angela Slater, 09 424 2133 or 022 603 6979, email [email protected]
West Auckland Boys’ Group contact:
Juliette Ngawaka, 09 837 3638 or 021 145 1730, email [email protected]
DADS – Dads Appreciating Down Syndrome contact:
Mike Rudkins, 027 441 3949, email [email protected]
MADS – Mums Appreciating Down Syndrome contact:
Yvonne Walker, 09 238 1331 or 027 439 2893, email [email protected]
Coffee Group for Chinese speaking parents contact:
Judy Sun, 09 479 8960 or 021 686 708, email [email protected]
Employees
Community Liaison Officer:
Christel van Baalen, 09 636 0351 or 09 636 0823 (DDI), 021 293 2660, [email protected] or Skype adsanz1
Librarian (Wed only): Diana Court, 09 636 0829 (DDI), [email protected]
Part-time Office Support: Sarah Jones
Editor: Diane Burnett, 022 034 6475, [email protected]
Deadline for copy for the June 2014 Outlook newsletter is 10th May 2014. Inclusion depends on available
space so please get your items in as early as possible to: [email protected] or [email protected]
Disclaimer
Through the quarterly newsletter Outlook, Auckland Down Syndrome Association (ADSA) will attempt to report items of interest relating
to Down syndrome. We do not promote or recommend any therapy, treatment, agency, product, political position, religion or advice. The
opinions expressed in the newsletter are not necessarily those of ADSA. The editor reserves the right to make corrections to materials
submitted for publication. All photos sent in to the newsletter become the property of the ADSA and can be used in other ADSA publications.
Contacts | p5
NZDSA National Achievements Awards Ceremony
This awards ceremony is held each year as part of the celebrations of World Down
Syndrome Day, which this year had the theme health, wellbeing and achievement.
On Tuesday 18th March I attended the New Zealand Down
Syndrome Association’s annual National Achievement
Awards Ceremony held in the Grand Hall at Parliament
House. The celebration of World Down Syndrome Day was
also celebrated with a T4T High Tea event and the first cup
of tea for The Honourable Tariana Turia was poured by our
very own Sarah Jones.
The Grand Hall was beautifully decorated in the NZDSA
colours and the afternoon tea was awesome. Members of
the Committee received many compliments on the way
the NZDSA organise these annual events to celebrate the
achievements of people with Down syndrome. These annual
occasions held in prestigious locations lift the levels of
respect and regard for people with Down syndrome as well
as recognising the abilities of the award recipients.
This year three achievers were acknowledged for their
outstanding accomplishments. They were Chris Whitmore
from Taranaki who was recognised for his work as a
volunteer rest-home worker and successful entrepreneur;
Katrina Sneath of Onslow College in Wellington, an
accomplished public speaker who is near completion of
NCEA Level 2; and Special Olympian Christopher Tavite
of Dunedin, who has won medals at Special Olympics
including gold. It was a privilege to read out their citations
and acknowledge their achievements. The Minister for
Disability Issues, The Honorable Tariana Turia handed
out their awards. Paul Gibson, Human Rights Disability
Commissioner, also handed out awards and both their
speeches were very touching.
who attended the ceremony. The citation recognised all
the work Val did for ADSA. Sadly, Val died last year and
her granddaughter, Georgia Garrett accepted the award
for Val. Georgia made a wonderful speech honouring her
grandmother. Val’s husband Gary attended as well as Tania
Garrett and members of their family.
One of the highlights for me during the ceremony was
seeing Carlos Biggemann at work. Carlos was one of last
year’s recipients of the National Achievement Award for his
accomplishments in photography and swimming. Carlos
had asked if he could take the photos at this year’s awards
ceremony. Carlos did an admirable job and looked the
absolute professional. The photo of this year’s recipients
was taken by Carlos. More photos of the event are in
NZDSA’s autumn issue of CHAT 21.
Source: Jenny Harkins, ADSA Chairperson and Auckland
Zone Representative on the NZDSA Committee
The Inaugural Volunteer Award was posthumously awarded
to Val Sturgess who was Secretary of Auckland Down
Syndrome Association for eight years. I put together Val’s
citation and it was a privilege to read it out to the 75 people
You’re a member of ADSA, now join the NZDSA
The New Zealand Down Syndrome Association is our
national organisation and in addition to representing
the regional associations at a national level by reviewing
policies and lobbying Government and other agencies, it
also provides its members with many benefits.
The NZDSA hosts a number of initiatives which its
members have the opportunity to participate in. This year
in particular the NZDSA is working on an amazing project
with department store Farmers and stylist Lisa O’Neill
to help people with Down syndrome dress for their body
shape. The result will be a DVD showcasing the models
who were selected.
Other initiatives include annual camps, advocacy
workshops, STRIVE*, the National Achievement Awards
and the Link Workshops held at the national biannual
Forum. This year the Forum is in Auckland and the ADSA
has been asked to put forward names for selection for the
Link Workshop. Only ADSA members who are also NZDSA
members can be selected for this workshop.
Membership also entitles you to receive the quarterly
NZDSA journal CHAT 21, which keeps you up-to-date with
all that is happening in the Down syndrome community
nationally, and to receive free and discounted resources,
as outlined in each issue of CHAT 21.
If you already receive the CHAT 21, then you are a
current member of the NZDSA. If you do not receive CHAT
21 then you are not a member.
The annual membership fee is $30. Or for a two-year
full Financial Membership it is $50. Financial Membership
entitles you to:
• Four CHAT 21 journals each year
• Free resources that have been produced by NZDSA
(there may be some postage involved)
• Invitations to take part in Youth Camps
• Invitations to the Annual Achievement Awards
• Invitations to take part in the Link Workshops at NZDSA
Forums
• Invitations to take part in other one off initiatives like the
Farmers project
If you would like to become a member and get these great
benefits contact Jenny Harkins, ADSA Chairperson and
ADSA members representative on the NZDSA Committee
on 027 866 028 or email [email protected].
Alternatively, you can contact Linda te Kaat, NZDSA
National Administrator on 0800 693 724 (press 2) or email
[email protected].
*Strive is a group of young adults with Down syndrome who have been working with the New Zealand Down Syndrome Association (NZDSA), learning skills to
allow them to speak for and represent the voice of people with Down syndrome.
Local News | p6
NZDSA Inaugural Volunteer Award –
Val Sturgess Memorial Trophy
Citation read out for Val Sturgess in the Grand Hall, Parliament on Tuesday 18th March 2014.
Val Sturgess was Secretary for Auckland Down
Syndrome Association for eight years as well as
providing Grandparent support for grandparents
throughout New Zealand.
In her role as Secretary Val was meticulous in her
attention to detail and was a stickler for doing
things correctly. Val was very successful in her many
applications for funding for Auckland Down Syndrome
Association in order that the Association could provide
support to its members and their families. Val always
represented Auckland Down Syndrome Association very
professionally.
people with Down syndrome and actively served the
Down syndrome community.
Val was immensely proud of her granddaughter Georgia
Garrett. She often shared photos of Georgia with the
Committee. Today, Georgia will accept the Inaugural
New Zealand Down Syndrome Association Volunteer
Award, the Val Sturgess Memorial Trophy, on Val’s
behalf.
Val was a very active member of the ADSA Committee,
always willing to help out at all the events ADSA held.
She was also great at volunteering her husband Gary
to be Santa at the ADSA annual children’s Christmas
party.
In September 2010, Val stood down from the ADSA
Committee reluctantly as she and Gary prepared to sell
up in Auckland and move to New Plymouth to be closer
to their family.
The New Zealand Down Syndrome Association
Committee and staff are also grateful for all Val’s
contribution to the Association. Val was a champion for
Gary Sturgess, holding the NZDSA Val Sturgess
Memorial Trophy awarded posthumously to Val
Sturgess, with granddaughter Georgia Garrett,
holding the National Volunteer Award certificate.
A Young Adult’s Guide to Flatting
A new publication by the Paradigm Initiative that will enable families to imagine
better for their family member with a disability.
The Paradigm Initiative with support from Parent to
Parent New Zealand has developed a resource that
follows four accounts of young people that have diverse
needs, who are living great but ordinary lives in their
community.
A Young Adult’s Guide to Flatting is a publication that
aims to create opportunities for families to imagine
better for their family member with a disability’s future.
The book is a resource which shows the potential of the
Ministry of Health funded Disability Support Services
‘New Model’ and individualised funding.
Lorna Sullivan says in the foreword of the book “...for
if we can imagine better, we can become better and
seek out those who will walk with us toward what we
know is possible, and away from what the doubters
and naysayers whose own fears and apprehensions
would stand in the way of what is both possible and
achievable in the lives of others”.
The book tells the four personal accounts of courageous
young people, who all have diverse needs and are
living great but ordinary lives in the community. Their
families have also shown great courage in following
through with a clear plan based around a long held
vision of a fully inclusive life for their son or daughter.
Crafting a good and ordinary life takes a lot of thinking,
talking, visioning, planning and acting.
Local News | p7
Along with these personal accounts, the book also
provides practical advice on planning, circles of
support, individualised funding, budgeting, and
learnings and suggestions for parents.
‘A Young Adult’s Guide to Flatting’ is available from
Parent to Parent at no cost. To obtain a copy contact
Parent to Parent on 0508 236 236 or email national@
parent2parent.org.nz.
For more information on the Paradigm Initiative visit
paradigminitiative.co.nz
Source: Parent to Parent Magazine – Summer 2014
The Connection – Holistic Health and Learning
First of its kind centre, now open in Silverdale.
The Connection is a dynamic team of complimentary
doctors, therapists and teachers dedicated to helping
the community raise healthier families and provide
a whole child approach to education. They deliver a
new story in family healthcare and education, rooted
in old fashioned common sense and blended with
the latest in science and neurology to help children
and adults to be the healthiest and best version of
themselves, naturally. They promote a ‘whole person’
philosophy and empower families to make informed
choices about their physical, mental and emotional
wellbeing.
Their Early Intervention Team offers a unique
approach to help babies and children who may be
struggling with learning, behaviour or movement.
The Services include:
• Occupational Therapy – Child’s Play sensory
integration
• Chiropractic – neuro-developmental approach
• Homoeopathy – CEASE therapy to help
detoxification of children
• Speech and Language Therapy
• Naturopath and Nutritional Consultants –
specialising in gut issues and whole food nutrition
The Connection is also very fortunate to have one of
the few Dr Voddar trained lymphoedema therapeutic
massage specialists in New Zealand, who helps to
detoxify and restore the body – great for children
and adults.
They offer a wonderful approach to education at
the Imaginarium, where children discover a love
of learning through interacting with their world.
The connection also offers Mind Spa for helping us
to keep life in perspective and work through the
challenges it presents along the way. It is great for
adults and teens who would love more clarity with
life’s decisions and challenges.
For more information call 09 421 1164,
email debbie@theconnection or visit
theconnection.co.nz.
The team (top left photo, l-r): Katie Marten, Vicky McMath, Helen Kennedy, Hayley Murray,
Gina Wilson, Debbie Janes, Lorene Dennis, Halina Szymanik.
Local News | p8
First new format course very successful
ADSA’s ‘Success in School’ two day education course had a record attendance of
teachers and teacher aides from schools across Auckland including two teachers
from Hamilton
Thirty three people attended the new format two day
course, which was opened with a presentation from
three Strive* members, Alex Snedden, Edward Borkin
and Sarah Jones. They were incredibly well received and
there were quite a few tears around the room as they
shared their own experiences about schooling and gave
out a set of really good pieces of advice for the teachers
and teacher aides who attended. It was very moving and
a fabulous way to set the scene and kick start the two
days. Following on from them was Dr. Jude MacArthur,
a Senior Lecturer at Massey University, the author of
‘Learning better together’ (a book commissioned by
IHC), and a well-known speaker on the topic of inclusion.
Jude presented an excellent session about inclusion with
the main point being about school values and how they
should apply equally to every member of a school. For
example, if your school’s values are Care, Think, Grow,
Act, then each person in your school should have the
same feeling of being cared for and the same feeling
that their thinking is being extended etc. Making the
point that sometimes when inclusion goes wrong, schools
need to actually step back and ask the question ‘have
we applied our school’s values to this situation, with this
particular student?’
After morning tea Sarah Goodall from Specialist Therapy
Services spoke. She delivered a great presentation about
using visual systems to support speech and learning.
In particularly she introduced visual schedules, mini
schedules and other techniques for using visual aids to
support a student’s learning. She really emphasised that
learners with Down syndrome struggle with memory
and speech and that their behaviour is a communication
tool for them. Their behaviour needs to be looked at
as part of their communication system and by using
visual supports we can then try to eliminate some of
the confusion that could be behind potential behavioural
problems.
Sarah’s session was the ideal lead in for Phillippa Lilburn,
a Psychologist formally with the Ministry of Education –
Special Education, who talked in detail about behaviours
and friendships. She spoke specifically about the
motivations of all human behaviour including people with
Down syndrome and that all behaviour is driven by some
type of need that must be met. For example; to escape
from an unpleasant situation that you are not enjoying –
it might be that your work is too hard and you’re really
frustrated – you might act out in order to get away
from that situational task. She emphasised that with
children with Down syndrome there could be some kind
of physiological issue behind their behavior, like the room
is too busy or there is too much noise, that might upset
them and they could react to it. Then she went on to
talk in detail about friendship, including using Circles of
Support** to develop friendships for which she provided
an excellent case study of how she has used it.
The day finished with a very brief introduction to
narrative assessment, delivered by Rachel Price,
teacher, parent and ADSA representative on the NZDSA
Education subcommittee, and Tracey Elder, parent and
teacher involved in the roll-out of narrative assessment
in Auckland. The session continued at the beginning of
day two the following week, but before that attendees
were given the task of identifying a wow moment during
that week in-between. Something that they couldn’t
wait to share with their colleagues at morning tea time,
something that really excited them and their student’s
learning for that week – they had to bring that idea back
with them to use in their own narrative assessment.
Day two continued with narrative assessment and
attendees were reminded that the way to write a
narrative is just like you would write a story, which once
finished you then analyse and look for what the story
tells you and how it can help you to plan your next
session/s. The narrative might identify an opportunity
you could help open up for the student or it could be
something that you learn for yourself – some kind of
reflection on your own teaching, maybe a technique that
worked really well. The session went for most of the
morning and included a workshop where attendees had
the chance to write their own narratives, using the wow
moment they remembered.
After morning tea Margi Leech took a session on the
learning profile of students with Down syndrome. She
followed it up with a session on numeracy and how to
adapt the curriculum for children with Down syndrome,
including general tips on the order that children with
Down syndrome learn. She made the point that students
with Down syndrome take time to master things but that
they should not be held back at the beginning levels for
long times and should instead be progressed on as they
continue to work towards mastering earlier learnings.
After lunch, Nanji Lauten spoke. She is a senior teacher
from the Specialist Teacher Outreach Service at the
Mt Richmond Special School, where Nanji supports
students with Down syndrome and special needs in
mainstream settings. She visits students in schools and
with the expertise she has gained over the years she
helps teachers adapt the curriculum to suit. She talked
about the specifics of literacy and reading including
that reading is a real strength of students with Down
syndrome as it taps into their visual memory so well and
it helps with speech production. She also spoke about the
problem with reading comprehension and strategies of
how to overcome problems as well as providing a lot of
information on how to adapt the daily school programme
to meet the needs of students with Down syndrome.
The second day finished with Rachel Price and Christel
van Baalen, parent and ADSA Community Liaison Officer,
showing and discussing the resources available in the
ADSA home/school information resource packs, which are
available from ADSA for members with a child with Down
syndrome about to start school.
Overall the feedback that we have received has been
incredibly positive. A number of attendees actually stayed
behind at the end of the second day to thank us for the
course and to let us know how much they had enjoyed
the two days and how much they had learnt.
We have had people as far away as the South Island
expressing their interest in attending the course and
hope that they, along with many others, will have an
opportunity to attend in the future.
Source: Rachel Price, ADSA Committee Member,
March 2014
*Strive is a group of young adults with Down syndrome who have been working with NZDSA learning skills to allow them to speak for and represent the voice of
people with Down syndrome. ** Circles of Support are a powerful way to address the social isolation and loneliness that many people with a disability experience.
Local News | p9
Photos needed
We are in the process of producing a general-purpose card featuring
portraiture style photographs of our members. We would like to show off a
diverse range of our members from babies to seniors and everyone in between.
We would love to see your photos. If you are interested please send your
photos to [email protected].
Flatmates wanted
Two people with a disability are wanted to share a four bedroom house in
Pakuranga/Highland Park. There is a bedroom for each person and there are three
toilets and two bathrooms. We are looking for people to live with two young men
who already share the flat. A support person who assists with personal care, job
seeking and cooking duties is in place Monday to Friday from 1-5pm. The house
is close to shops, buses and amenities. Please contact Yvonne on 09 533 8324.
If the phone goes to voicemail please leave a message with your name and contact
phone number.
Call for TV talent for the Moe show
Moe is the most huggable, innocent creature on the face of the Earth.
He lives in a treehouse he has built for himself. He likes going on adventures
and meeting new friends.
Moe is a New Zealand children’s television show
based in Auckland. Moe is based on the real
New Zealand legend of the Moehau Monster, a
furry creature who roams Mount Moehau on the
Coromandel Peninsula. The show is educating and
entertaining children through the adventures of its
title character, a puppet named ‘Moe’ and the help
of his friends. They are currently filming the second
season and it’s important that they portray kiwi kids
accurately and fairly by including a wide range of
children (you can watch previous episodes on
four.co.nz/TV/Kids/Shows/Moe.aspx and you
can get updates by liking the show on Facebook
facebook.com/TheMoeShow).
need to look as though they’re in that age bracket),
can follow instructions and preferably aren’t
too shy. Moe will ask the children some questions
about the episodes topics. If your children would
like to be involved, please email Roslyn on
[email protected] with a photo and a
little about what your children like to do as well as
your contact details (as the parent/caregiver of the
child/children).
They would very much like to include children from
ADSA families in a couple of episodes, particularly
with their siblings and/or friends as they want to
show that children with Down syndrome have as
much fun as everyone else. Also they find children
have more fun on the show when they are with
other children they know. The requirements for all
children on any episode of Moe is that they are aged
between 6-8yrs (they allow some leeway, they just
Notices | p10
Music and Fun Playgroup
Where children with special needs can play and socialise in a fun and
supportive environment.
The Music and Fun Playgroup was setup by two
retired therapists and some mums in September
last year. The group is for children with special
needs aged 0-5 and their parents/carers. It is held
in Newmarket and is run during the school term.
When: 9.30–11am every second Wednesday during
the school term (started back 5th Feb 2014), see
dates for each term below.
Term 3: Wed 23rd July to Wed 17th September
2014, on the dates shown: Wed 23rd July, Wed
6th & Wed 20th August, Wed 3rd & Wed 17th
September
Term 4: Wed 15th October to Wed 10th December
2014, on the dates shown: Wed 15th & Wed 29th
October, Wed 12th & Wed 26th November, Wed
10th December
Where: Courtyard Room at The Community of
Saint Luke Centre, 130 Remuera Rd, Newmarket
What to bring: Morning tea for your child and a
gold coin donation for tea/coffee and use of the
room. For more information contact Margaret
Davidson, [email protected] or Marjorie
Blakeley, [email protected]
Term 1: Wed 5th February to Wed 16th April
2014, on the dates shown: Wed 5th & Wed 19th
February, Wed 5th & Wed 19th March, Wed 2nd &
Wed 16th April
Term 2: Wed 7th May to Wed 2nd July 2014, on
the dates shown: Wed 7th & Wed 21st May, Wed
4th & Wed 18th June, Wed 2nd July
ARE YOU WORRIED ABOUT YOUR CHILD'S DEVELOPMENT?
Our team of Occupational Therapists,
Physiotherapists, Speech Language
Therapists, Dietician, Social Worker
and Psychologists are here to help
your child reach their potential
THERAPY 4 CHILDREN
We can help with:
• Getting ready for school
• Handwriting
•Speech difficulties
•Social skills
•Clumsiness & co-ordination
• Independence Skills.
• Making sense of senses,
e.g. touch, sound.
Parent and teacher training
is available on request.
Contact our team on 0800 557 556
www.qualityrehab.co.nz
Local News | p11
Our clinics are located in:
Albany, Henderson and East Tamaki
with school, pre-school and home visits
also available.
Photos from the Social Clubs February activities.
Local News | p12
New Social Clubs lots of fun
Music, dancing and homemade pizzas were the perfect start to a great evening.
The first events for our new Social Clubs for the
year were held on Saturday 1st February at the St
Columba Community Centre in Grey Lynn. They
were both a great success with nine attendees per
group, that is the Juniors, aged 13-17yrs and the
Young Adults, aged 18-35yrs. The evening was
spent getting to know one another, while making
pizza, dancing and discussing the types of activities
members would like to do each month this year. Both
Social Clubs meet the first Saturday of every month
– further details are included on the calendars below
– and are run on behalf of ADSA by Recreate NZ
Co-ordinator Renee Duncan.
For more information and to join contact Christel on
09 636 0351 or email [email protected].
Young Adults Social Club, for members aged 1835yrs. Similar to the first group; we started off with
icebreaker games and some charades. While waiting
for our homemade pizzas to cook in the oven, we
sat together around a large table and discussed
what we would like to do this year. There was a lot
of interest in getting in the kitchen and cooking a
variety of different and exotic meals together, like
having a dinner party. Going for fish and chips in the
park or at the beach was another popular choice.
There was also a lot of interest in fun performing arts
based activities, such as SingStar, dance groups and
performance. Perhaps even getting someone in to
teach a dance to the group that could be performed at
the end of the night in front of parents.
Junior Social Club, for members aged 13-17yrs.
We kept the afternoon simple and social by starting
off with some icebreaker games, which gave us
all a chance to get to know one another. Then we
made our own pizza (half per person), which proved
to be quite fun and gave everyone an opportunity
to sit down and rest a little. We also had a small
fashion show by breaking into groups and dressing a
member of that group as a superhero.
Social Club Calendars for 2014
Juniors (13-17yrs) – March to July 2014
Sat: 11am-2pm
March 1st
April 5th
May 3rd
June 7th
July 5th
Activity
Auckland Zoo
MOTAT
Tenpin Bowling
Movies
Mid-Winter Ball
Meeting Location
Western Springs
Western Springs
Newmarket
St Lukes Event
Cinemas
$10
St Columba
Community Centre
Free
Cost
$10
Free
Juniors (13-17yrs) – August to December 2014
$10
Sat: 11am-2pm
October 4th
November 1st
December 6th
Xmas Party
August 2nd
September 6th
Activity
Megazone
Kelly Tarltons
Swim Day
Ferry & Picnic at
Devonport
Meeting Location
Ponsonby
Mission Bay
Parnell Baths
Downtown
Cost
$10
$15
$5
$5
St Columba
Community Centre
Free
Young Adults (18-35yrs) – March to July 2014
Sat: 9-6pm
March 1st
April 5th
May 3rd
June 7th
July 5th
Activity
Dinner & ice-cream
at the beach
Mission Bay
Mexican Fiesta
La Porchetta
Curry Night
Mid-Winter Ball
Location
Mission Bay
St Columba
Community Centre
Parnell
St Columba
Community Centre
St Columba
Community Centre
Cost
Spending money
for dinner ($20)
$10
Spending money
for dinner ($20)
$10
Free
Young Adults (18-35yrs) – August to December 2014
Sat: 9-6pm
August 2nd
September 6th
October 4th
November 1st
December 6th
Activity
Thai night
Roast Dinner
Megazone &
Burgerfuel
BBQ Picnic
Xmas Party
Location
Ponsonby
St Columba
Community Centre
Ponsonby
St Columba
Community Centre
St Columba
Community Centre
Cost
Spending money
for dinner ($20)
$10
Spending money
for dinner ($20)
$10
Free
Local News | p13
Choice in Community Living
An update for people living with a disability and their families about the Choice in
Community Living (CiCL) demonstration.
The goal of Choice in Community Living is to
give people living with a disability and their families
more choice and control over where and how
they live.
The Ministry of Health’s Disability Support Services
is providing more flexibility so that people can
choose how they are supported with their funding.
For those who may wish to explore alternatives to
residential care, then CiCL provides that option.
People who are choosing to take up CiCL are being
well supported and many are discovering new
independence, living in their own place or in shared
flatting arrangements.
What the CiCL support team is finding is that
people really grow in confidence when they are
given the opportunity to make their own decisions.
Individuals are managing the way they are
supported to truly fit the way they want to live
their lives.
CiCL is making a positive difference to people’s
lives through increased funding flexibility, bringing
real choice and control, says Morgan Stevenson,
Project Manager, Disability Support Services,
Ministry of Health. ‘We are now seeing the hard
work from everyone involved translate into greater
numbers of people being supported to live their
good life. ‘More importantly than numbers however,
are the positive outcomes for people’s everyday
lives as seen through the fantastic stories being
shared. ‘For me, hearing about these stories and
the positive changes taking place is a privilege.’
The next six months is shaping up to be very busy
for providers, NASC and the Ministry of Health.
CiCL – FAQs
The Ministry of Health’s Choice in Community
Living is for people who:
• live in a residential service and want to leave and
move into a home they rent, lease or own in their
own right
• live in their parent’s home, have disability support
needs similar to people in residential services, and
want to live in a home they rent, lease or own in
their own right.
People must be eligible for disability support services
funded by the Ministry of Health before they can
access Choice in Community Living.
Launched as a Ministry of Health demonstration
project in late 2012, CiCL aims to support up to 150
people in Auckland and the Waikato.
How does it work?
• People access CiCL through the Taikura Needs
Assessment Service Coordination (NASC), based in
Auckland; or the DSL NASC, based in the Waikato.
• Once assessed as eligible, people are provided
with information on funding they can access
from the Ministry of Health, and a list of support
agencies to choose from in their area.
• Eight approved providers are available to support
people as part of CiCL. Their role is to assist
the disabled person, along with family/whānau
and friends, to develop a plan on how they can
use their funding and to support their move into
independent living.
Once completed, the plan is submitted to the NASC.
The support agencies are:
•
•
•
•
•
•
•
CCS Disability Action (Auckland and Waikato)
Community Living Trust
Idea Services Ltd
Iris Ltd
Renaissance 2001 Ltd
Spectrum Care Trust
Te Roopu Taurima O Manukau Trust.
Update on CiCL
• Thirty-four people have taken it up to date with
some 90 more in transition towards it.
• This option is proving popular with younger
people, with just under a third of those in the
process of taking it up aged 16–25 years.
• Around two-thirds of people who have taken
up CiCL were previously living with residential
services, the remainder in the community.
Who can I call to find out more?
• Taikura NASC (Auckland), Liz Tohu, e: elizabeth.
[email protected] or t: 027 588 3342
• DSL NASC (Waikato), Nellie Harris, e: Nellie.
[email protected], or t: 07 839 1441
Or visit the Ministry of Health website information
page at health.govt.nz/your-health/services-andsupport/disability-services/new-model-supportingdisabled-people/choice-community-living
Source: Choice in Community Living Newsletter, Issue 1, January 2014
National News | p14
Attitude Pictures launches new home for content
AttitudeLive.com is now live
AttitudeLive.com is the home of real resources
and authentic stories for and about the disability
community. It’s a place where you can share
experiences and connect to others in the community.
The AttitudeLive project is an extension of the work
produced across nine years by Attitude Pictures,
and proudly supported by funding partner NZ on Air.
AttitudeLive is a place where you can belong, see and
meet other people like you, and source information you
can trust.
Behind AttitudeLive is a passionate team, passionate
about the disability sector, passionate about producing
great video content, and passionate about providing
a platform where people can engage. Where
conversations can grow, challenge, and make people
think differently.
And just because they’ve got a new website with a
new logo it doesn’t mean they’re not proud of where
they’ve come from. They are still the same team that
is Attitude Pictures and they still have a lot of content
on YouTube, visit youtube.com/user/AttitudeTV, as well
as continuing to screen weekly episodes of Attitude on
TVNZ One on Sunday’s at 8.30am, with a new season
just started.
Source: AttititudeLive.com, Feb 2014
AttitudeLive secured the rights to the Sochi
2014 Paralympic Winter Games
Allowing New Zealander’s to watch our Paralympians live as they competed – for free.
AttitudeLive.com, with the support of NZ On Air,
ACC and TVNZ delivered New Zealanders with the
most comprehensive free-to-air broadcasting of any
Paralympic Winter Games. They streamed 45 hours
of live coverage and highlights packages from Sochi
2014 between 7-16 March, as well as documentaries
on competing athletes. Content is available on demand,
just in case you missed it first time round.
In addition to providing the most comprehensive
coverage ever of a Paralympic Winter Games in New
Zealand, AttitudeLive has an option to provide coverage
from the athletics, shooting and swimming World
Championships over the next two years.
“Part of our belief is that we need to engage the
audience and raise the profile of the athletes and that
this will help change attitudes towards the one in five
New Zealanders who live with disability. These athletes
are role models. The countless medals achieved by NZ
Paralympians like Adam Hall, Sophie Pascoe, Cameron
Leslie and others show what’s possible. But we’re
eager to encourage young people to see a pathway in
sport whether that is rehabilitation, recreation or elite
performance.” Robyn Scott-Vincent, CEO of Attitude.
Last year AttitudeLive followed our fastest winter
athletes to La Molina, high in the Pyrenees. In the
documentary produced, Adam is battling fierce
competition to defend his world number one ranking,
while Corey is fresh to the elite-sporting world. You can
watch the video at attitudelive.com/documentary/fighttop. Adam Hall and Corey Peters also competed
in Sochi.
National News | p15
The rights aren’t just an opportunity to cover the
Paralympics – it also helps AttitudeLive with their
commitment to covering all disabled sports.
Check out Pete Williams and Adam Hall: the city slicker
and the country boy, in Off the Edge. Pete and Adam
have different backgrounds and different takes on
training but both lay it all on the line as they prepare
for the 2010 Vancouver Winter Paralympics. You can
watch the video at attitudelive.com/documentary/edge
And watch Ben Southern in Skating for Glory. Ben
juggles work, home and training as he prepares for
the 2009 Special Olympics World Winter Games in
Idaho, where he’ll be the only figure skater on the
New Zealand team. To watch visit attitudelive.com/
documentary/skating-glory.
Source: AttitudeLive.com, Feb 2014
Ben Southern at the World Special Olympics
IHC sues Ministry of Education over lack of
educational inclusion
IHC has lobbied for the right of children with an intellectual disability to attend
their local school for more than 64 years.
In 2008 IHC lodged a complaint with the Human Rights
Commission. IHC’s complaint said that children with a
range of disabilities experience discrimination at their
local school. Families had told them about the ongoing
difficulties they experienced in having their child’s right to
education recognised. Children with disabilities are treated
differently to non-disabled children in matters to do with
enrolment, access to the curriculum and participation in
school life.
IHC believed that these practices contravened New
Zealand’s commitments to important international human
rights conventions. IHC decided to have these practices
examined within a human rights context using the
mechanisms available within Part 1A of the Human Rights
Act, 1993. Earlier and sustained attempts to resolve these
problems within the education sector had been met with
only limited success. In addition it appeared to IHC that
there was a general acceptance at a government and
community level that different treatment of children with
disabilities at their local school was just “how it was”.
In December 2011 the then Director of the Office of
Human Rights Proceedings, Robert Hesketh accepted IHC’s
application for legal representation, however he retired
and the new Director, Robert Kee, reversed the decision to
provide legal representation to the complaint in its current
form.
The Board of IHC is disappointed with the Director’s refusal
to proceed with the claim accepted by his predecessor.
Discrimination continues to be experienced by children and
young people with disabilities on a daily basis. Therefore,
the IHC Board has decided it will fund the necessary legal
representation required to take the claim of discrimination
to the Human Rights Review Tribunal. IHC is delighted
that Frances Joychild QC has agreed to argue IHC’s case
in the Tribunal. Frances has vast experience with Part 1A
cases including the Child Poverty Action Group and the Paid
Family Carers cases.
Support for the case comes from many quarters. One
of them is Giovanni Tiso, the Board of Trustee Chair at
Berhampore School in Wellington. He spoke recently at
a forum in parliament on Best Practice in Quality Public
Education and highlighted the problem that schools are
incentivised not to include children with special educational
needs. These incentives include the inadequate provision
for children with targeted funding (ORS), coupled with
the fact that the Special Education Grant is distributed
to schools regardless of actual need. Moreover, children
with special educational needs by law have to be assessed
against National Standards, which affects a school’s
apparent performance when those results are published
in league tables by the Ministry and the media. The text
of Giovanni’s excellent speech is published on his blog
bat-bean-beam.blogspot.co.nz/2013/12/reversing-ourcommitment-to-exclusion.html
The IHC Advocacy team will now meet with their legal
counsel and establish a timetable for the proceedings.
They are looking for new evidence from families and
schools to underpin their legal arguments and to that end
will be communicating with disability and children’s sector
organisations.
To read more about the complaint and to get in contact,
visit ihc.org.nz/campaigns/education/education-complaint/
Source: IHC Hot Issues – December 2013 & Education
Complaint, ihc.org.nz and IEAG News & Events,
ieag.org.nz, Jan 2014
Child Development Services: Stocktake
and needs analysis
This piece of work is a significant investment by
the Ministry to ensure the national Child Development
Service and Conductive Education System are
transparent to all.
DSS has commissioned The University of Auckland to
undertake a national stocktake and needs analysis of
Child Development Services and Conductive Education.
A team from the university’s Centre for Child and Family
Research, made up of Dr Deborah Widdowson, Asst Prof
Robyn Dixon and Prof Saville Kushner, will conduct the
stocktake. The work is a significant investment by the
Ministry as, to date; there has been no systematic study
of these services at this level.
The stocktake’s aim is twofold. Firstly, it will inform
decision-making and policy development in the
Ministry based on realities and challenges on-theground. Secondly, the stocktake extension into a self-
assessment instrument will support services to monitor,
assess and inform their own practices and to report to
the Ministry in terms that properly represent the work
they do. The exercise will ensure the national Child
Development Service and Conductive Education System
are transparent to all and a basis for sharing experience.
If you have any questions about this work, the points of
contact are:
Murray Penman, Relationship Manager, Family and
Community Services – email murray_penman@moh.
govt.nz
Dr Deborah Widdowson, PhD, Director,
Centre for Child and Family Research – email
[email protected]
Source: Disability Support Services e-newsletter
National News | p16
Dads ride for Champion Centre cause
Two fathers completing a cycling challenge have almost reached their goal to raise
$10,000 for the Champion Centre - where services are now in danger due to lack
of funding.
Murray Wilkinson and riding companion Martin
Nichols took the centre’s plight in their stride
and will cycle 1100 kilometres in a week with the
hope of raising $10,000 as part of cycle challenge
Kiwi Brevet.
Wilkinson’s daughter, Lydia, 7, was born with Down
syndrome and two holes in her heart, learned
to love the performing arts at the Champion
Centre. Lydia’s love of performing began when
she was only about a year old and having trouble
communicating. Her parents initially tried sign
language, but it was only after she was introduced
to music at the centre that she started to form
words.
centre has served almost 2000 children to date.
Centre director Susan Foster-Cohen was firm in
saying it would be an “absolute last resort”, but
aspects of privately-funded services would be first
in the firing line.
The centre was on track to post a similar $216,986
deficit this year to what it did in 2013, which would
be compounded by some other financial woes.
Source: Fairfax NZ News, Feb 2014
Nichols’ daughter Lily also has Down syndrome
and is about the same age as Lydia. “We’ve always
wanted to give something back.”
To date the pair have raised $9,850 and have
cycled 964km at an average of 13km/hr and
expect to arrive in Blenheim about lunch time
tomorrow after traversing The Arnaud Range before
descending into the Wairau River plain towards
Blenheim. They have been in the saddle for three
days, one hour and 42 minutes of riding time.
The Champion Centre supports 150 children born
prematurely or with disabilities until they are school
age, when they are transitioned into school. The
National News | p17
Little Star: Murray Wilkinson with daughter
Lydia, 7, who has Down syndrome. Wilkinson
is completing a charity bike ride to raise funds
for Christchurch’s Champion Centre.
Fifty Years On, Controversy Surrounds
Down Syndrome Discovery
It’s been over 50 years since scientists determined that an extra copy of the 21st
chromosome is responsible for Down syndrome. But today a battle continues over
who deserves credit for the discovery.
For decades, Jérôme Lejeune was heralded as the
one who spotted the chromosomal difference in those
with Down syndrome. But in recent years, Science
Magazine reports that another scientist – Marthe
Gautier, 88 – has come forward to say that she, not
Lejeune, was really the one to first notice an extra
chromosome.
The claim from Gautier has ignited rebuke from
Lejeune’s supporters and the conflict came to a head
earlier this year. Gautier was scheduled to give a
talk to the French Federation of Human Genetics.
The speech was abruptly cancelled, the magazine
reports, after officials from Lejeune’s foundation sent
two bailiffs with a court order to record Gautier citing
concerns that she might ‘tarnish’ Lejeune’s memory.
For her part, Gautier insists that she was the one
who first noticed an extra chromosome in those with
Down syndrome, but acknowledges that Lejeune
determined that the additional chromosome was an
extra copy of the 21st that everyone has.
Simone Gilgenkrantz, a scientist and friend of
Gautier, told Science Magazine that Gautier’s
experience is an example of sexism and that her
story needs to be told ‘in the name of women.’
Source: Disability Scoop, February 2014,
disabilityscoop.com
Claiming credit. Marthe Gautier’s talk at a
recent genetics meeting in Bordeaux was
cancelled.
Mental Health Issues and Down Syndrome
What are the major mental health related concerns in persons with
Down syndrome?
At least half of all children/adults with Down
syndrome face a major mental health concern during
their life span. Children/adults with multiple medical
problems experience an even higher rate of mental
health problems.
The most common mental health concerns include:
general anxiety, repetitive and obsessive-compulsive
behaviours; oppositional, impulsive, and inattentive
behaviours; sleep related difficulties; depression;
autism spectrum conditions; and neuropsychological
problems characterised by progressive loss of
cognitive skills.
The pattern of mental health problems in people
with Down syndrome vary depending on the age and
developmental characteristics of the child/adult with
Down syndrome.
To review the issues and read the full article titled
Mental Health Issues and Down Syndrome as posted
on the National Down Syndrome Association website,
an American organisation established in 1979, visit
ndss.org/Resources/Health-Care/AssociatedConditions/Mental-Health-Issues--Down-Syndrome
Source: National Down Syndrome Association,
ndss.org
International News | p18
Rome restaurant serves up new
attitude toward Down syndrome
It was another busy night for the staff at the Girasoli restaurant in Rome, which
serves up traditional pizza and pasta dishes along with a new way of looking at
disability in the workplace.
The neon-signed restaurant was set up in a suburb
southeast of the Italian capital by the parents of
children with disabilities, and it functions just like any
other eatery – except 13 of its 18 employees have
a disability. “I love this room, monitoring it, making
myself available, being in contact with people,” said
Simone, a 24-year-old who after a paid internship of
600 hours now has a permanent contract with Girasoli
(Sunflowers). “And above all I just love being here!” he
said.
When a group of women came in Simone deftly showed
them to a table, clutching a few menus in his hand. “We
heard good things about it so we wanted to come,” said
one woman, while her friend added: “Basically it’s a
normal restaurant – except the waiters are nice!”
As he tucked into an amatriciana pasta dish, 64-year-old
teacher Giuseppe said: “When you come here for the
first time, you have certain expectations but you quickly
realise that there is no need to have them!”
The restaurant was set up in 2000 and is aimed at
offering work to people with Down syndrome. “My
waiters do their job and do it very well,” said chief
waiter Ugo Menghini, praising the efficiency and speed
of his staff. “If I was to set up my own business, I
wouldn’t hesitate to hire people with Down syndrome.”
Like many businesses in Italy, the restaurant has been
hit by the recession and was forced to shut for several
months last year for restructuring and renovation. It
is now being run by Consorzio Sintesi, a social cooperative association which specialises in giving jobs to
people with disabilities and also manages three call-
International News | p19
centres for the Italian mobile phone operator Wind. “The
state pushes for assistance but we prefer professional
training. Everything here is self-financed with no
subsidies from the state,” Enzo Rimicci, the head of the
association, told AFP. “Every employee here manages
to find their place based on their skills,” Rimicci said,
explaining for example how one staffer, Marco, was too
shy to work with customers but proved to be “a real
machine” in the kitchen.
The restaurant’s training is rigorous and out of the 13
employees with Down syndrome, nine are still interns.
When Girasoli is closed in the morning, another team
comes in to make cookies and cakes for the evening
customers. Anna, a 22-year-old waitress, came in even
on her night off to have dinner with her parents. “For us,
for her it’s a great victory,” said her father, Carlo, tearing
up as he described his daughter’s transformation since
she started work. “Our daughter has gained autonomy.
When she comes home from work, she is happy, proud
of what she’s done,” he said, adding that Anna had also
made progress “in how she relates to other people, in
her language”.
A further sign of the restaurant’s success is that another
one is in the works. A new one is expected to open soon
in Palermo in Sicily and Rimicci said there were even
plans to turn the idea into a franchise and create many
more outlets.
You can view a short video about this article on YouTube
at youtube.com/watch?v=LqNZqNbKgiI
Source: AFP news agency, Feb 2014
Call the Midwife’s most controversial
storyline yet as disabled boy and girl fall
in love and have a baby
The love between Jacob Milligan, who has cerebral palsy, and pregnant
Sally Harper, who has Down syndrome, is branded unnatural in 1950s London.
It will be Call The Midwife’s most controversial storyline
yet – and one of its most heart-breaking. This month
more than 9million viewers will see how a romance
between a disabled man and woman, and the baby it
produces, causes disgust in 1950s London. The couple,
who live in an institution, are immediately separated
from each other. And the love between Jacob Milligan,
who has cerebral palsy, and pregnant Sally Harper,
who has Down syndrome, is branded unnatural. The
discomforting plot, inspired by writer Heidi Thomas’
personal experiences, will shatter the usual easy, heartwarming pace of the BBC show. And today the disabled
actor and actress at the centre of it reveal how, even
in our supposedly more enlightened times, there is still
discrimination to overcome.
But in an uplifting interview, Sarah Gordy and Colin
Young say their roles in the hit series have left them
grateful they were not born in post-war Britain. “It made
me feel such anger when I read the script,” says Sarah,
who has Down syndrome. “Back then people did not
want to admit they had a disabled person in the family.
They would say it was ‘bad blood’. “I know how lucky
I am because I’m not institutionalised like they were
then. I live with my family in Sussex. I do my acting and
I work as a Mencap ambassador. “I get to have my own
life and I don’t see myself as different from anyone else.
In those days they were treated as though they were
incapable of making their own decisions – even when it
came to relationships.”
Sally falls in love with Jacob, played by Colin Young,
after both are sent to an institution by their parents.
Jacob is ridiculed by Sally’s mother and father for
getting her pregnant. And Scottish actor Colin, 27,
says he knows just what it feels like to be judged by
strangers. Colin, who grew up with cerebral palsy in
Edinburgh, recalls: “When I was six I was walking down
the street with Dad and someone shouted, ‘why would
you bring someone like that out with you?’ “My dad told
him: ‘He’s actually my son’. I remember things like that
because they’re hurtful. “But I went to a mainstream
primary school and spent a few years at a secondary
and I wasn’t bullied there. “It was hard because I had
to watch from the sidelines as people played sport. I
wasn’t included in everything, but I’ve always strived
for my independence. “It’s what I value most in life. As
a kid, I never realised how hard it would actually be to
achieve. Just getting the support and practical things I
need to live independently takes a lot of patience. But
it’s what I always strived for.”
difficult love story after experiencing disability first-hand
when her late brother was born with Down syndrome in
1970. And they have called on other TV shows to tackle
similarly sensitive issues – to help end discrimination
for good. Colin says: “Heidi told me she wanted to write
this episode for a long time. “She wanted to express the
difficulty of disabled people wanting to find love.
I would say attitudes are still similar towards sex now.
“I’d like to find a partner and have a family of my own
one day. My relationships have mostly been with other
disabled people, because I’ve found there’s often a kind
of mutual understanding of life but it all depends on
the person.”
Sarah says that unlike Sally she has no desire to
fall pregnant. She denies it has anything to do with
her Down yndrome – a genetic disorder affecting
around 1 in 1,000 babies in the UK. She says filming
her pregnancy scenes was made easy by “warm and
friendly” Miranda Hart (Chummy Noakes) and Bryony
Hannah (Cynthia Miller). Sarah adds: “Miranda was the
biggest hoot. She wandered in from make-up one day
wearing a thin midwife’s uniform and with one leg of her
Long Johns down one ankle and the other hitched above
her knee.” But playing the part didn’t change Sarah’s
mind about having a baby of her own. She says: “I’ve
never wanted one. I have friends with disabilities who
have families and it is so tough, but it’s not even about
that. I would just prefer to focus on my career.” Jacob,
who studied politics at Loughborough University and
now lives in a flat in Glasgow, wants more TV dramas
to involve disabled actors. “I am just a part of society
and that should be represented on our screens,” he
says. “I am so glad Call The Midwife isn’t afraid to tackle
sensitive issues.”
Source: Mirror, mirror.co.uk, Feb 2014
Old-fashioned attitudes towards sexual relationships
between disabled people have moved on, but Colin says
it’s still not an easy subject matter.
That’s why both he and Sarah, 25, are glad Call The
Midwife’s writer Heidi Thomas was keen to tackle such a
Forbidden love: Jacob and Sally
International News | p20
‘Glee’ actress tells FHSU crowd about life
Lauren Potter, activist and “Glee” star, has worked her entire life to
overcome challenges.
Born with Down syndrome, she always dreamed
of being an actress.
“There were some who said I could never do
it,” she said Wednesday, addressing a group of
approximately 150 students at Fort Hays State
University. “I was dancing before I could even walk.
I always loved music.”
When Potter was 18, she received a phone call from
a friend in Hollywood. “She knew about my dream,”
Potter said. “I would tell anyone and everyone who
would listen.” The casting director was looking for a
girl “who wasn’t afraid to reach for the stars,” Potter
said. She must have Down syndrome, but also be
cute, witty and spunky.
They were looking for someone to play Becky
Jackson, a cheerleader who overcomes her struggle
with the disability, on the new television show “Glee.”
“I had always wanted to be a cheerleader,” Potter
said. “And even though I tried out at my high school,
I wasn’t allowed to cheer. I knew I wanted this job.
I also knew I had to work really hard and do a really
good job.”
Potter said she still loves playing the part of Becky,
but it has been a hard season for the cast after losing
Cory Monteith to drugs. “This has been a sad and
rough time for our ‘Glee’ family,” she said. “We lost
our dear friend. I loved Cory. He was always so sweet
and had so much talent.” She now is adding drug-use
to her list of causes. “Everyone should remember
Cory’s death,” Potter said. “Drugs are never the
answer to relax, have fun or be cool. How would it be
if we never had to lose another friend to drugs?”
Potter said the producers of Glee have given her a
voice. She now has the ability to speak against
drug-use and bullying. “I was bullied when I was
a kid,” she said. “I was pushed down, made to eat
International News | p21
sand, called the ‘R’ word. That’s why I have been
fighting to end bullying.” Mary Williquett, Potter’s
cousin and assistant who helped field questions from
the audience, said Potter is more confident since being cast in the show. “When she was younger, it was
a lot different,” Williquett said. “She used to hide behind me when we went out in public. Now she knows
who she is and owns it.” As a result, she has been
highly involved in Best Buddies, a non-profit organisation dedicated to establishing a global volunteer
movement that creates opportunities for one-to-one
friendship for those with disabilities. “Kids with disabilities are just like you,” Williquett said. “That’s why
we do so much with Best Buddies. It’s a charity that
just promotes friendship. If you don’t have money,
everyone has friendship. That’s all these kids want.
They’re all lonely.”
Despite the serious topics of the night, Potter didn’t
fail to entertain. Potter and Williquett bickered about
food choices after Williquett complained about not
being able to buy frozen yogurt because Kim Kardashian also wanted frozen yogurt. Potter disagreed
with having frozen yogurt for dinner while she ate
McDonald’s. Williquett argued McDonald’s isn’t a
better dinner than frozen yogurt. “Hey,” Potter said.
“McDonald’s is the most important meal of the day.”
Potter is working on the fifth season of “Glee” and is
attending college. She dreams of becoming a massage therapist in addition to continuing as an actress.
“I am never ever going to give up my dreams and
stop reaching for the stars,” she said.
Source: The Hays Daily News, hdnews.net, Feb 2014
Social Clubs – update for March
The first two trips under the new Social Club structure were on Saturday 1st March
and both were a great success. Speaking with parents before and after the events
and watching how much the members and volunteers enjoyed themselves made
me thoroughly pleased with how they both went.
Junior Social Club, for members aged 13-17yrs. The
March activity was a trip to the Auckland Zoo, which
was fantastic. We were lucky to have great weather
and a very high ratio of members to volunteers with
seven members and six leaders (myself included).
We spent most of the time together as a group,
stopping for lunch halfway round. We happened
to arrive at the perfect time to feed the giraffe,
which most of the participants and volunteers were
keen to give a go as you can see by the photos
on the opposite page. We finished the day with
complementary ice-blocks given to us by the Zoo
– a real treat. It was a great day with lots of fun
had by all.
Young Adults Social Club, for members aged 1835yrs. The March activity was a picnic dinner at
Mission Bay reserve where 13 members and four
volunteers attended. We met outside Otto Woo
and when everyone had arrived we ordered Asian
fusion meals to takeaway. We made our way across
the road to the reserve for a picnic where we sat
on the grass in a large circle and enjoyed good
conversation, delicious meals and where we had a
lovely view of Rangitoto Island as the sun set behind
us in the distance. We were so lucky to have good
weather that night however, the shift of season from
summer to autumn was definitely noticeable as the
cold wind picked up towards the end of the evening.
When we had all finished dinner it was getting dark
so we walked down the Mission Bay strip to find
the best dessert bargain. In the end we settled for
the not-so-cheap Mövenpick for ice-cream treats.
Mövenpick had enough indoor seating for all of us
and it was next door to the pick-up location, which
meant we could take our time and relax. At the end
of the night everyone was happy, new friendships
were in the beginning stages of being made and
parents were stoked – it felt exactly like what the
Social Club is meant to be.
This month on Saturday 5th April
Junior Social Club: are going to MOTAT, which is
free of charge. We will explore the exciting exhibits
MOTAT has to offer, with a stop for lunch halfway
through followed by a fun trip on the tram to the
Aviation Display Hall. Hopefully we will be lucky with
the weather again but if not, much of what MOTAT
has to offer is well covered so I expect weather will
not cause any issues.
Young Adults Social Club: will meet at the St
Columba Community Centre in Grey Lynn for an
on-site dinner party. The theme will be Mexican
Fiesta. Members are asked to bring $10 to contribute
to the cost of ingredients, which I, Renee, will buy
beforehand. We will spend the first part of the
evening preparing the food together and setting
the table in our Mexican Fiesta theme. Then we will
eat together with Mexican music in the background
and possibly even costumes to match. The night will
finish with more entertainment including music and
dancing. It will be a blast!
A letter with full details of each event will be sent
out to members one and a half weeks prior to each
event.
Source: Renee Duncan, Recreate NZ Coordinator.
Dance It – new holiday programme
Natasha Sharp and Natalie McAllum from Dance It
Limited have put together a new holiday programme
during the April school holidays.
It is a three day programme from Tuesday 22nd to
Thursday 24th April from 9am to 3pm and it will
include dance, sport and craft. It is for primary
school to secondary school age people and it is even
for those who have left school but would like to do
something creative in the holidays and have fun.
The cost for the three days is $150 and the venue is
Elm Park School in Gossamer Drive, Pakuranga.
Natasha is a Dance Teacher and already takes
a dance class on a Tuesday evening from 6.157pm during term time and Natalie is a qualified
Kindergarten teacher. Please contact Natasha on
021 793 018 or email [email protected] to enquire
or make a booking.
Local News | p22
Photos from the Junior Social Club’s trip to Auckland Zoo.
Photos from the Young Adults Social Club’s picnic dinner at Mission Bay.
Local News | p23
The Auckland Down Syndrome Association thankfully acknowledges the following funders:
Auckland Council – COGS – Lottery Grants Board – The Lion Foundation – Zeald
rants Board
Lottery Grants Board
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