July Newsletter - Auckland Down Syndrome Association

Outlook
Date: July 2013 | Issue No: 56
Buddy Walk Record Turnout
Raises Funds For Resources
Contents
Buddy Walk Pics
p6
Charity Golf Day Notice
p13
Changes To Carer Policy
p17
Research Update
p22
The 8th annual Buddy Walk was held on Sunday 24th
March and it was a resounding success. The weather
was absolutely fantastic, we had a great stage
line-up and best of all we had an amazing turnout.
for their amazing support. A big thank you to all of
We made approximately $22,000, which will be used
to develop a School Resource Pack for Intermediate/
High School students.
And last but definitely not least to the Buddy
We have some great photos thanks to Ursula Lawgun
and Keith Maynard. We would like to thank everyone
Sally Rayner and Brett Cronin. Without you
our sponsors, especially the Auckland City Council for
their funding towards the organisation of the event.
Walk organising committee: Diana and
Simon Court, Tracey Elder, Annie Williams,
there is no Buddy Walk.
Chairperson’s Report
It is with great sadness that
I write that Val Sturgess,
pictured right, passed away
on Wednesday 29th of May.
Val had heart surgery about
two weeks before she died.
Val was Secretary for the
Auckland Down Syndrome
Association for eight years
and Grandparent Support
for grandparents throughout New Zealand. Val’s
contribution to our Association was invaluable, she
was always on hand to help out with all our activities.
Many of you would have known Val’s husband,
Gary, as ‘Santa’ at our Christmas parties held at
the Manukau Golf Club. Val guided the Committee
through becoming an Incorporated Society and
a member of the Charities Commission.
Val was known as being very attentive to detail and a
stickler for doing things correctly. Val retired last year
and she and Gary moved to New Plymouth to
be closer to her mother and their family. Earlier
this year Val and Gary lost their granddaughter
Stephanie. Our condolences go out to Gary and
daughter Tania Garrett, who have served the Down
syndrome community enormously over the years,
and all their family at this very sad time.
You will see that ‘Outlook’ has a new look. Di Burnett
and Natasha Gould have worked successfully to
secure sponsorship for the new design and printing
of our quarterly newsletter from Big Communications
and Blue Star Group New Zealand Limited. ADSA is
very grateful for this sponsorship.
Hope you like it.
If you wish to read Outlook online instead of
receiving a paper copy, please advise Christel
either by email [email protected] or on 09 6360351.
Buddy Walk which was held on Sunday 24th
March was once again a very successful event,
with fine weather, good attendance and great
entertainment on the stage. Thank you to the
Buddy Walk organising committee, Diana and Simon
Court, Tracey Elder, Sally Rayner, Brett Cronin,
Annie Williams and Christel van Baalen for their
commitment to organise this event for ADSA.
Also thank you to all our sponsors, bakers,
entertainers and volunteers for this major fundraising
event. There is a montage of photos of the fun in
this issue.
Christel and Rachel held another roll out of our
Primary School Education Resource Pack to four
families on Saturday 8th June.
Our Committee is looking to replace two members
who have had to step down in recent times due to
their family commitments. If you would like to help
on the committee for the betterment of our children,
we would really love to hear from you.
We particularly would love to have someone on the
Committee who could fill the role as Treasurer, who
would work with our Accountant Helen Cussell and
Christel van Baalen our Community Liaison Officer.
If you would like to be on the Committee, please
contact Christel at the ADSA office 09 6360351,
[email protected], or myself Jenny Harkins
027 4866028.
Lastly, it is ball season for seniors at their
respective colleges. My daughter Laura asked Max
Cussell to accompany her to the Pakuranga School
Ball at the Ellerslie Convention Centre on the 11th of
May. Max went as an ‘outside’ partner, we had the
pre-ball at our home and everyone had a great
night. I would like to acknowledge Pakuranga
College as a wonderful example of ‘inclusion’.
Thanks once again to Jess for producing this
newsletter voluntarily.
Happy reading.
Jenny Harkins - Chairperson
Laura Harkins attended the Pakuranga College school ball last month. Laura is pictued above, left
with her date Max Cussell, and with her family Jess, Jenny and Peter at the pre-ball at her home.
Chairperson’s Report | p2
Committee Members
Chairperson & representative on the NZDSA Committee:
Jenny Harkins, 027 4866 028 or 09 530 9091, [email protected]
Secretary: Natasha Gould, 021 226 8954, [email protected]
Committee member & representative on the NZDSA Education Subcommittee:
Rachel Price, 027 781 6714, [email protected]
Committee member: Diane Burnett, 022 034 6475, [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 7th August and Wednesday 4th September.
Taxi Services Review Following Issue
Last year the Ministry of Education signed new contracts for transport services across New Zealand to enable
young disabled people to attend school. However, several problems with the new contracts have made the
news in various centres, indicating problems with the new system.
A recent example is the situation of the twins with autism barred from the new service in Porirua as the
driver cannot cope with their behaviour. Earlier this month Associate Education Minister Nikki Kaye announced
the establishment of special education school transport assistance (SESTA) reference group to improve the
provision of SESTA services. Sam Murray of CCS Disability Action is one of the nine members of the reference
group.
People Needed To Monitor UN Convention
The Convention Coalition of eight disabled people’s organisations is helping with monitoring the United Nations
Convention on the Rights of Persons with Disabilities. They are urgently seeking more young disabled people
aged 16-17 years of age to interview about their life experiences and to assess how well the government is
meeting its obligations under the Convention. The exercise, under Article 33 of the Convention, will look at
areas such as health, employment, education and social inclusion.
The information obtained from the interviews will be confidential and no identifying information will go into
the report.
For more information, contact Nathan Bond: 022 0140173, or [email protected].
Through Outlook, Auckland Down Syndrome Association 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 expressions expressed in the journal are not necessarily those of ADSA.
Committee Members | p3
Regional and Coffee Group Contacts
Central and East Auckland regional contact & East Auckland Coffee Group contact:
Francesca Voykovich, 09 272 4148 or 021 333 724, email [email protected]
South and West Auckland regional contact:
Christel van Baalen, 09 636 0823 or 021 293 2660, email [email protected] or [email protected]
North Auckland regional contact:
Alison Whittington, 09 418 2131 or 021 268 4080, 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]
South Auckland Girls’ Group contact:
Bronwyn Rydon, 09 277 5701 or 027 408 9064, 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 from Term 3): Diana Court, 09 636 0829 (DDI), [email protected]
Editor: Jessica Harkins, 021 851 548, email [email protected]
Deadline for copy for the September 2013 Outlook newsletter is 20th August 2013. Inclusion depends
on available space so please get your items in as early as possible to: [email protected]
or [email protected]
Contacts | p4
Notices
Student Job search is a tool
students use to find employment,
on a casual, part time or full
time basis. It may be a useful
service for those families with
Individualised Funding to
find someone to work with
their family.
See sjs.co.nz to create a listing
or find someone seeking carer
work.
Volunteer
Wanted!!
Treasurer and
Book Keeper
Can you
help??
See p11
NOTICE OF 2013 ANNUAL
GENERAL MEETING
Sunday 25th August 2.00 – 4.00 PM
ADSA offices, Parent and Family
Resource Centre, 92A Spring St,
Onehunga
Please transfer this date onto
your calendar.
ADSA is inviting two
parents to speak about the
experiences they have had with
their adult children, becoming
independent and moving into
their own homes.
RSVP to [email protected] or
636 0351. More information to
come in August.
Calls For More People With Disabilities On TV
By Natalia Sutherland reporting for Te Waha Nui­- AUT University’s newspaper.
Comedian and actor Philip
Patston wants this to change
and is leading a campaign
to see those with disabilities
appear more regularly in
mainstream television shows.
Patston heads a campaign
called Unique Extras – More
Diversity on Screen which
he hopes will get broadcasters
and the public talking more about those with disabilities and why they are not represented on television.
Patston believes more exposure of disabled people
on our television screens would change people’s
perception of disability.
“People’s social reality, based on the media world, is
that people with the experience of disability hardly
exist,” he says.
He says research shows the public is more willing
to accept disabilities on television than the media
itself is.
He says shows like Glee and its character Artie – who
is in a wheelchair – are widely accepted by people
and that people do not see his character’s disability
but enjoy his musical ability.
Patston does not believe discrimination is the
reason people with disabilities are not on television.
“It’s a lack of thinking about it, knowing how to go
about it and aversion to taking risks and doing
something new,” he says.
But Green MP Mojo Mathers says there is
discrimination towards disabled people on
television and there is too much focus on their
disabilities rather than the people themselves.
“There is a tendency to either have disabled people
as super heroes overcoming all the odds to be super
achievers, or as being overwhelmed by struggle with
disability,” she says.
Instead she would like to see disabled people as
actors in shows and as presenters on television.
“Disability is a normal part of life and society.
It should be a normal part of what we see on TV,”
she says.
Patston agrees, saying disability itself is not
interesting and that most people find the “prospect
scary”.
He says this is the reason shows such as Attitude
are not popular in mainstream media because they
only focus on the disability.
Local News | p5
Buddy Walk 2013
Auckland Down Syndrome
Association wishes to say a heartfelt
thank you to the 2013 Buddy Walk
sponsors for their support. And
especially to the Auckland City Council
for their sponsorship.
Agrodome, AJ Hackett Bungy
Auckland, Alta Bean Bags, Anglican
Trust for Women and Children, Annie’s
Marlborough Ltd, Auckland Adventure
Jet, Auckland Fire Station, BENEFITZ,
Bike Parks Ltd, Bivouac Queen Street,
Blackstone Group Ltd, Blue Lake Top
10 Holiday Park, Blue Star Print Group
New Zealand, Bogaart Dezign,
Butterfly Creek, Caci, Cadbury,
Cerebos Gregg’s Ltd, Chand
Family, Crombie Lockwood (NZ)
Ltd, Daiv Guest, Dalston Ltd,
Dave & Maria Fastnedge,
Des Britton, Dilmah New
Zealand, Douglas
Pharmaceuticals Ltd, Envirology,
Explore NZ, Extreme Edge
Climbzone, Formé Spa, Fullers
Group Ltd, Furniture City-H.O.,
Healthy Life Media Ltd, HireQuip,
House of Chocolate, Hubbards
Food Ltd, Icing on the Cake, Indian
Summer Restaurant, Jack Link’s NZ
Ltd, Kids Music Company, KRIPPZ,
Lemonade Design Ltd, Lion Nathan,
Mainly Toys, Malcove, McDonald’s,
Microlene Water Purifiers, Miranda
Hot Springs, Monty’s Promotions Ltd,
Local News | p6
Morris & James Pottery &
Tileworks, Mt Eden Cycles, New
Zealand King Salmon, New Zealand
Woman’s Weekly, Nick and Sam
Richards, North Shore Jumping Beans,
Numicon - Procon Ltd, NZ Breakers
Basketball Ltd, Pak ‘n Save Lincoln
North, Paradise Valley Springs, Peppin
Boutique, Printlink, a division of Blue
Star Group, Pumpkin Patch Ltd,
Pyrénées Noir, Wine & Food Bar,
Q Construction Ltd, Rainbow Springs
Kiwi Wildlife Park, Rainbow’s End
Theme Park, Roger & Heather
MacKenzie, Scholastic New Zealand
Swanson Pharmacy, Tamara Spa &
Jasmine Spa, TechSpan Group, Tegel
Foods Ltd, The Edge - Auckland
Convention Centre, The PR Shop,
Titirangi Pharmacy, Trilogy, Vada
Hairdressers, Valentines Restaurant
Lincoln Road, van den Bogaart Family,
Vodafone Foundation, Vodafone
Warriors, Wai-O-Tapu Thermal
Wonderland, Waipuna Hotel &
Conference Centre, Wella Auckland,
Wishbone Design Studio, Woodhill
Mountain Bike Park, Yates New
Zealand, ZORB Ltd.
Also a special thank you to
the following people: MC Nik
Brown, Brett Fairweather with
JumpJam, Campbell MacKenzie,
Natasha Sharp and dancers from
Dance It, Captain Tierry and band
The Mutes.
If you would like to be part of
this fun, dynamic organising
committee, give me a call and I
Ltd, SheepWorld, Shoe Science,
Skinfood NZ Ltd, SkyCity Auckland
Ltd, SKYCITY Grand Hotel, Skyline
Rotorua, Skywalk Ltd. - Mission
Control, Sleepstore, Soljans Estate
Winery, Stardome Observatory, Steam
Brewing Company, Subway Mt Eden,
will let you know when we start
organising our 2014 (9th!!!) Buddy
Walk. If I inadvertently left you off
this list then please accept my sincere
apologies. See you in 2014!
Christel van Baalen
Local News | p7
Local News | p8
Local News | p9
Volunteer Wanted: Treasurer/Book Keeper
Auckland Down Syndrome
Association is looking for someone
who would be willing to take on
the role of voluntary book-keeper/
treasurer for the Auckland Down
Syndrome Association. This
person needs to be available to
come into the ADSA office during
working hours to use the
computer and attend the monthly
Committee meetings, which are
held the first Wednesday of every
month (except January).
Once a month you will be
liaising with our accountant, who
provides our committee with
monthly financial data, including
the statement of financial
performance and position.
We envision this to take up
approximately 10 to 15 hours
a month.
This could be an ADSA member
or maybe a retired grandparent,
Local News | p10
auntie or uncle of a person with
Down syndrome. Financial
knowledge a must. ADSA works
with the accounting system
QuickBooks.
What does this involve?
• Regular entry of supplier/
creditor bills. This involves
receiving /checking /coding/
entering/obtaining approval
and paying between 5-15 bills
per month, depending on level
of activity.
• Collation of credit card
payments made during month.
• Approve, liaise with Librarian
on purchase of library
materials.
• Raise regular invoices for
activities/services offered by
ADSA.
• Ensure insurances are renewed
and updated, reconcile
telephone and fax/photocopier
usage to PFRC re-charges.
• Run database to record receipts
of subscriptions/fees/donations
for fundraising activities
(B/Walk and Golf Day).
• Receive financial mail and sort/
prioritise. Query if relevant
(IRD/bank/audit etc.).
• Other financial matters as
they arise.
• Ensure data entry is kept up
to date with online bank
statement. Record online
donations/customer payments,
other receipts etc.
If you are interested or know
someone who could be interested,
please contact our president,
Jenny Harkins (via email),
[email protected]
Philanthropy — What’s it all about?
Thought Leaders from throughout the world informed, challenged and stimulated
the thinking of Philanthropy New Zealand members at its April conference and
three Charity Services staffers were impressed.
Peter Dixon, Manager Education
and Sarah Doherty and Pitsch
Leiser, Regional Advisers
Capability say they were fortunate
to attend the 2013 Philanthropy
New Zealand Conference as it
was an excellent opportunity to
be part of conversations around
funding in the Not-for-Profit
(NFP) sector.
Philanthropists are challenging
themselves to ensure every
dollar makes the largest amount
of difference in New Zealand in
the areas where it is most
needed, the trio conclude.
“For me it was all about
knowledge exchange,” says
Pitsch. “The idea that your
knowledge and my knowledge
shared, exchanged and
intermingled grows our knowledge
and that of others; in this case
the effectiveness of our NFP
organisations.”
Another highlight was hearing
Bronwen Golder, speaking about
the high trust model that funders
use to fund the Global Ocean
Legacy. Bronwen stunned us when
she said she has never written a
project report or a budget,
what she does is maintain a close
relationship with the Pew
Foundation and its funding
partners. They trust Bronwen’s
outstanding skill and expertise
to progress the ambition. Quite
different to the outputs and
outcomes approach, having the
focus on funding the ambition.
Sarah was impressed by Sir
Stephen Tindall, of the Tindall
Foundation, with ‘Teach NFPs
how to engage with consultants’
and then ‘fund them to do so’.
Mary Jo Kaplan said ”Honour the
past. Be ruthlessly honest about
the present. Boldly imagine
the future”.
To me the idea of an ecosystem
captures so much more of the
picture than sector,” Sarah
says. “Ideas like: organic,
complex, multi-faceted,
interlinked, connected and
living, come to mind.”
foundations with the means and
mana to speak out”.
The whole notion of the
conference was about catalytic
philanthropy – a different
approach to traditional
philanthropy (funding a direct
need), or venture philanthropy
(funding the scaling/growth of
a successful existing initiative).
Catalytic philanthropy focuses on
the notion of investing resources
to create an even greater return
than your initial investment.
This is a complex subject, but it
was really great to explore with
the experts at the conference.
The Charities Services Education
team works to be a catalyst in
supporting charities in New
Zealand and I came away with
some new ideas and focus for
ways to deliver this goal.
Peter says “the challenge to
funders and agencies supporting
charities to give their opinions as
well as their money in terms of
supporting healthy communities
was an interesting perspective.
Philanthropy New Zealand
includes a wide variety of
philanthropists and grant makers
ranging from large family
foundations to community trusts
and small bequest foundations.
While this is not always a role
for a government agency, it does
hold a real opportunity for private
From www.charities.govt.nz May
2013 Update newletter.
Local News | p11
“We’re not alone!” The Taku Manawa
Mana Hauā programme
The Human Rights Commission recently began a Taku Manawa Mana Hauā
programme in Auckland.
This three year programme
began with an eight-day course
that focused on disability rights.
Participants learnt about both
domestic and international human
rights law and the links between
human rights and community
development. They also learnt key
facilitation skills so they can run
human rights programmes
themselves.
Taku Manawa (My human rights)
are human rights community
development programmes for
people and organisations who are
interested in advocating and
promoting equal enjoyment of
civil, political, economic, social
and cultural rights in their
communities. They’re actively
engaged with diverse
communities and want to give
effect to the Treaty of Waitangi.
The participants of the Taku
Manawa Mana Haua work in the
area of disability rights and
may have lived experience of
disability either personally or
through a family member.
As well as learning about human
rights, the participants put their
ideas into practice by facilitating
three human rights education
Local News | p12
sessions. The people who
completed the course successfully
gained a New Zealand
Qualifications Authority unit
standard.
Myra completed the course
and here’s what she had to say:
Kia ora, this is Myra Barrett, I
am Māori Deaf. It was interesting
to know about the Taku Manawa
course. It gave me a chance to
understand and gain knowledge
about human rights and
disability rights. I also learnt how
to express myself out in public so
I can deliver information about
disability rights. Now I’m also able
to advocate for another person
with a disability.
At first, I was anxious about how
to communicate with other
hearing learners with disabilities
there. It was a good thing we
had an NZSL interpreter with us.
So we were able to communicate with Leilani and Rohan from
the Human Rights Commission
throughout the eight days of
human rights study.
Whiti is also Māori Deaf and he
attended this course too. We were
able to grasp knowledge and learn
how to overcome barriers. I
found this course good and useful.
The Commission gave out clear
information. It was also great to
hear about other learners and
their barriers. We’re not alone!
It was really good to have a friend
beside me and we made new
hearing friends at this course.
They were motivated to learn
NZSL and able to communicate
with us which was excellent.
This hearing-blind person asked,
“What’s the signing for coffee?”
I communicated with her through
the NZSL interpreter to show her.
Using two fists, you put one on
top of the other and then circle
twice. This is the sign for coffee.
When we did our presentation for
assessment we used NZSL in a 30
minute session.
It is good for a Deaf person/
community to be able to be
involved in the Taku Manawa
course and to acknowledge our
rights that connect to disability
rights. The NZSL interpreter
was awesome in helping
communication between ourselves
and Leilani, Rohan and our
new friends.
Auckland Down Syndrome Association
Charity Golf Day & auction
Sunday 24th November 2013
(1:00pm Shotgun Start)
In conjunction with the Manukau Golf Club
(The tournament is an Ambrose Format at Manukau Golf Club)
Great South Rd, Takanini offramp
Cost per team - $520.00
This includes:
One team of six players
Sausage sizzle at 12 noon
Prizes
Drinks cart
Evening meal
Contact John Ferens Ph (09)2927891 / 021 860300 or E-mail [email protected]
Entry And Support Form
Yes, we would like to enter a team...........................
Other ways you can help support this charity
16 Individual hole sponsorships available at $100 per hole
Product donation for prizes
Product donation for auction
Cash or voucher donation
Contact Name: ______________________________
Phone: ________________ Email: ______________
Please forward this form with your entry fee/sponsorship/donation to
Auckland Down Syndrome Association
c/o John Ferens, 137 Karaka North Road, RD1 Papakura 2580
Please note: entry fees must be received by 7th November 2013
Local News | p13
Welcome to the world Marlowe John Burnett
The Burnett family recently
welcomed Marlowe John
into the fold. Marlowe’s
big sister Jada is pictured
with her brother in
hospital, above centre,
and on her new bicycle to
the right. The Burnetts
are doing well, and have
a lot of support from
their extended family,
says Diane.
Creating a Positive Hospital Experience:
NZDSA Resource with Geraldine Whatnell
Here’s a little more information
about the new Creating a Positive
Hospital Experience Resource:
and healthcare professionals to
create positive hospital
experiences.
The New Zealand Down Syndrome
Association in collaboration with
Geraldine Whatnell, has
developed a new resource that
will empower individuals with
Down syndrome, their families
The resource consists of a DVD
and four booklets. The booklets
are:
Local News | p14
•
Having your Blood
Pressure Taken
•
Going to the Dentist
NZDSA members can order the
resource at $10 to cover the cost
•
Patient passport
of administration and postage.
•
Having your Yearly
Health Check
Non-members can order the
resource at $20 including postage.
ADSA Library Update
Hi everyone, welcome to news from the library, if you haven’t visited the ADSA
Library already I encourage you to go to our ADSA website adsa.org.nz and
click on the big blue Library button and check out all our library resources that
are available.
Over the last few months I have noticed that the
section Growth and Development has been quite
popular due to some of our resources on sexuality.
I would like to share with you some of the resources
we have available so far in the library on this topic.
Billy Grows Up is a short film
produced by IHC about puberty
designed to be watched by boys
approaching puberty. It will help
them understand the changes
they will go through. It should
be viewed with families and
caregivers, who can be on hand
to answer questions.
Tara Grows Up is a short film
produced by the IHC about
puberty. It is designed to be
watched by girls and young
women before they have their
first period. The DVD should be
viewed with their families and
caregivers, who can be on hand
to answer questions.
Special Boys Business.
This book has been written
for boys with special needs.
It supports boys, their
parents and carers through
the changes experienced
at puberty.
Special Girls Business.
This book has been written
for girls with special needs.
It takes girls and their
carers step-by-step through
the process of managing
periods. The book is easy
to understand and offers practical and appropriate
information in a fun, friendly and inclusive manner.
It is an invaluable resource for preparing and training
girls for puberty.
Teaching Children with Down
Syndrome about Their Bodies,
Boundaries and Sexuality A Guide for Parents and
Professionals. This book gives
parents the confidence to speak
comfortably about these
sometimes difficult subjects.
In an easy-to-read, non-clinical style, the book
covers relevant issues and concerns for children of
all ages.
Talk To Me has been
specifically written to assist
parents in preparing their
daughters with Down syndrome
for adolescence. It contains very
explicit sexual language, clear
drawings of body parts and
explanations of their functions
(as one would expect!). When you
reach the time to begin to teach your daughter
about her body this is the resource you need. The
sections for Women and Girls have workbooks on
Feelings and Self Esteem to expand vocabulary and
understanding, which are suitable for use from ten
years old to adult.
Sexuality. The New Zealand Down
Syndrome Association offers
a publication on sexuality
including information on puberty,
sex, sexual abuse.
IMPORTANT NOTE:
From Term 3 the library open
day will change from a Friday to
a Wednesday. The opening hours will remain the
same (10.30am-2pm during the school term).
The library committee also welcomes any resource
suggestions for the library that you know of or find
useful. We also gladly accept any good quality and
useful resources that you think might be good to
have in our library or you can donate them to our
box of resources that have not been put onto the
shelves but maybe useful to someone.
You are welcome to come and have a look to see
if there are any resources you might find useful
and/or donate items to the box.
I look forward to meeting and joining more of our
ADSA members up to the library. You are welcome
to contact your Librarian Diana Court by email
[email protected] or Ph: 636 0829 DD if you
have any queries or suggestions.
Local News | p15
Louis Court The ‘Drama King’
Louis Court loves to play dress up. This is Louis after mum Diana picked him up
from a friend who has three girls. “Louis and Riley do a lot of dress ups and
concerts, so cute,” she says. “Add on mums boots and what a look!”
Miah Eades Loving School
Miah has started at Willow Park School
Nykie, so Miah is in there and hopefully
this year. “She LOVES it! She says yay!!
will stay there for as long as she needs
every morning when the uniform goes
on,” says her mum Nykie.
“The school has been amazing. We have
“It’s kind of an extension to what she
two teacher aides to cover her day from
was getting at kindy, working core
8:30am-3pm and she’s really focussed
on learning too apparently...”
Willow Park have a transition class, adds
Local News | p16
before “formal learning” starts.
strength and muscles, learning fine
motor & gross motor.... and lots of
social and art stuff! We are very lucky!”
Concern Over Public Health and Disability
Amendment Bill No.2
The day after the National-led Government set out its Budget 2013, it passed, under urgency and in one day,
the Public Health and Disability Amendment Bill No.2. This move has raised concerns throughout the disability
sector, and among those who keep an eye on New Zealanders’ constitutional rights to appeal. Mike Sullivan, of
Saving Downs, has written to Minister for Disability Issues Tariana Turia, his local MP and the Green Party to
outline his organisation’s concerns, which are similar to those raised in mainstream media in recent weeks.
He writes:
Dear Tariana, Phil and Mojo,
As the Minister for Disability Issues, my local MP and Green Party spokesperson for Disability issues,
respectively, I would like to raise with you on behalf of Saving Downs our concern about the constitutional
implications of the passing the Public Health and Disability Amendment Bill No.2 last week.
As you will be aware, last Friday the Government passed under urgency the Public Health and Disability
Amendment Bill No.2, in response to the High Court and Court of Appeal decisions that the Government had to
pay family members who looked after people with disabilities on an equal basis that non family members are
paid to do so (because not doing so was discriminatory).
Our view is that the bill:
·
Overrides decisions of the Human Rights Review Tribunal, the High Court and the Court of Appeal in basic
matters relating to freedom from discrimination on the basis of disability;
·
Undermines fair wages by allowing for a lower rate (the minimum wage rather than the appropriate carers
wage) to be paid to carers who happen to be family members;
·
Removes access for complaints that the policy discriminates on the basis of disability to be taken to the
Human Rights Commission and the associated courts; and
·
Is unconstitutional in preventing people making claims to the Human Rights Commission, a right that is
guaranteed under the Bill of Rights Act, the Human Rights Act and the UN Convention on the Rights of
People with Disabilities.
Our understanding is that Attorney-General Chris Finlayson has said in his report to Parliament:
“[Section 70E] appears to limit the right to judicial review because it would prevent a person from challenging
the lawfulness of a decision on the basis that it was inconsistent with [the Freedom from Discrimination
section] of the Bill of Rights Act… On balance, I have concluded that limitation cannot be justified under s5 of
the Bill of Rights Act.”
We view this as a breach of basic civil, human and disability rights. It fundamentally undermines the
New Zealand Bill of Rights and the spirit and intention of the UN Convention on the Rights of People with
Disabilities, of which New Zealand is a signatory and the New Zealand Disability Strategy.
The removal of access by disabled people and their families to New Zealand courts for complaints that
government policy is discriminatory is entirely unacceptable and must be redressed immediately.
This is an entirely unsatisfactory situation which leaves the Down syndrome community in a vulnerable
position for further human rights breaches and abuses by the Government.
We ask you to take urgent steps to ensure this Bill is repealed.
More writing on the bill can be found here: pundit.co.nz (I think National Just Broke Our Constitution)
Local News | p17
Immunisation Update
By Karin Batty, Registered Nurse and Dr Marguerite Dalton, Paediatrician
Immunisation Advisory Centre
This article explains the National
diphtheria at 45 years and 65 years
(Pneumovax® 23). Although
Immunisation Schedule and Special
old. The vaccine is free but they may
Pneumovax® 23 covers more types
Programme vaccines that people with
have to pay for the nurse or doctor to
of pneumococcal bacteria than
Down syndrome can have for free
give the immunisation.
Prevenar 13® it doesn’t work very
and other vaccines that they or their
parents can consider purchasing
privately. Information about Outreach
Immunisation Services is also
provided.
The National Immunisation
Schedule
It is important for babies, children,
adolescents and adults with Down
syndrome to receive the free National
Immunisation Schedule vaccines when
they are due.
People with some medical conditions
and everyone 65 years or older can
Babies from six months old, children,
to protect them against influenza (flu).
adolescents and adults.
What is special about people
with Down syndrome and
immunisation?
Annual influenza (flu) immunisation is
People with Down syndrome are
more likely to get respiratory tract
infections (1,2). It is also more likely
for these infections to affect the
lower respiratory tract and cause
pneumonia, bronchiolitis and croup.
after baby is born, even if they arrived
The infection may be more severe and
early, followed by immunisations at
it can take longer to recover (1).
old. These immunisations protect
against tetanus, diphtheria, whooping
cough, polio, hepatitis B, Haemophilus
influenzae type b (Hib) and
pneumococcal diseases.
When children are 15 months old
they have immunisations to boost
their protection against Hib and
pneumococcal diseases and their first
immunisation to protect against
measles, mumps and rubella. Then
when they are four years old they
have an immunisation to boost their
protection against tetanus, diphtheria,
whooping cough and polio, and their
second measles, mumps and rubella
immunisation.
Immunisations are available to
protect against some of the bacteria
and viruses that cause respiratory
illnesses such as Streptococcus
pneumoniae (pneumococcal),
Haemophilus influenzae type b (Hib)
and influenza (flu).
Babies and children less than
five years old
In addition to the standard
Schedule immunisations that include
protection against Hib infections,
recommended (3).
Down syndrome is not included in
the Influenza Kit list of conditions
qualifying for free influenza
immunisation (3). However; many
people with Down syndrome have
medical conditions that may qualify
for free flu vaccination. Examples
of how a person with Down syndrome
could qualify for free influenza
immunisation include:
• They have a weakened immune
system (immune suppression),
• They are a child between six
months and five years old and have
been hospitalised for a respiratory
illness or, in their doctor’s opinion,
have a history of significant
respiratory illness,
• They were born with a heart
problem.
Check with your doctor or nurse,
babies and children less than
or telephone the Immunisation
five years old with Down syndrome
Advisory Centre on 0800 IMMUNE
are eligible for the High Risk
(0800 466 863) to discuss how people
Pneumococcal Immunisation
may be eligible for free influenza
Programme. At six weeks, three
immunisation.
All adolescents have an immunisation
months, five months and 15 months
at 11 years old to boost their
old they receive a pneumococcal
protection against tetanus, diphtheria
immunisation that protects against
and whooping cough and girls have
13 types of Streptococcus pneumoniae
immunisations at 12 years old to
(Prevenar 13®) instead of the
protect against human papillomavirus.
standard immunisation that protects
The adolescent immunisations are
against 10 types (Synflorix®).
given through a school programme
years old.
have a free immunisation every year
The first immunisations are six weeks
three months and five months
well in children less than two
People living in residential/
supported accommodation
People living in group
accommodation, e.g. boarding school,
university hostels, residential and
supported accommodation, may also
Then at two years and five years
have a higher risk of illness caused by
old they receive extra pneumococcal
Neisseria meningitidis (meningococcal
Adults have immunisations to boost
immunisations that protect against 23
disease). In New Zealand, vaccines to
their protection against tetanus and
types of Streptococcus pneumoniae
protect against this disease have to be
or their doctor.
National News | p18
purchased privately through your
protect against them. You can also call
doctor. You, your doctor or nurse
0800 IMMUNE for more information.
can telephone the Immunisation
Advisory Centre for free on 0800
IMMUNE (0800 466 863) or visit the
Outreach Immunisation
Services
website www.immune.org.nz to find
There are many reasons why parents
out more about the meningococcal
find it difficult to take their baby or
vaccines available and discuss which
child to the doctor to receive National
vaccine might be right for you or
Immunisation Schedule and High Risk
your child.
Pneumococcal Immunisation
Other immunisations worth
considering
Programme vaccines.
Most District Health Boards
operate Outreach Immunisation
Immunisations to protect against
Services where an immunisation nurse
rotavirus (an illness with severe
visits the child at home or assistance
vomiting and diarrhoea) and
with transport is provided for the
chickenpox can be purchased
child to go to an immunisation clinic
privately through your doctor.
or their doctor. You can make contact
Rotavirus
Protection against severe rotavirus
infection may be particularly
important if your baby has problems
feeding or with their gastrointestinal
(digestive) system. Babies need to
have their first oral rotavirus
immunisation before they are 14
weeks old and their second oral
immunisation before 24 weeks old.
Chickenpox
with Outreach Immunisation Services
through the National Immunisation
Register office run by your District
Health Board. A list of District Health
Boards is available on the Ministry of
Health website under NZ health
system/District Health Boards.
Key points:
at 6 weeks, 3 months, 5 months
and 15 months old.
• Contact your practice nurse about
immunisation with Pneumovax®
23 when your child is 2 and 5
years old.
• It is recommended that babies
aged 6 months and over, children,
adolescents and adults with Down
syndrome have an influenza
immunisation every year.
• Outreach Immunisation Services
are provided by most District
Health Boards.
• You or your doctor or nurse can
telephone 0800 IMMUNE (0800
466 863) for free information
about immunisation or visit the
Immunisation Advisory Centre
website www.immune.org.nz.
1.Ram G, Chinen J. Infections
vaccines are due at 6 weeks, 3
months, 5 months, 15 months, 4
12 years old.
admitted to hospital. The rash can
Prevenar 13® instead of Synflorix®
• National Immunisation Schedule
with chickenpox will feel miserable
complications and may need to be
• Check that your child is receiving
References
years, 11 years and, for girls, at
recover, some will develop serious
and 5 years old.
• Immunise your child on-time.
Although most healthy children
and itchy for a week or so and
• They receive Pneumovax® 23 at 2
• Additional High Risk Pneumococcal
and immunodeficiency in Down
syndrome. Clin Exp Allergy.
2011;164(1):9-16.
2.American Academy of Pediatrics.
Health supervision for children
Immunisation Programme vaccines
with Down syndrome. Pediatrics.
are due at 2 years and 5 years old.
2011;182(2):393-406.
3.National Influenza Specialist Group.
also aggravate skin conditions such
• Babies and children less than five
as eczema which is more common
years old with Down syndrome
Everything you need to know about
in people with Down syndrome. The
are eligible for the High Risk
influenza 2013. Wellington: Ministry
chickenpox vaccine can be given from
Pneumococcal Immunisation
of Health; 2013.
nine months old.
Programme.
The Immunisation Advisory Centre
• They receive Prevenar 13® instead
website has fact sheets on these
of the standard pneumococcal
diseases and the immunisations that
immunisation (Synflorix®).
National News | p19
Max models for Positive Negative
Ante-natal Screening, Disability Rights and
the Convention on the Rights of Persons
with Disabilities
Disability-selective antenatal
with disabilities are born and influence
in the world and is likely to have
screening programmes have been
attitudes towards these people and
widespread positive implications
attracting the attention of disability
their families.
internationally for those countries
advocates worldwide. And rightly
so, as we witness on a global scale
programmes that target the Down
syndrome community for birth
prevention. These programmes
reinforce attitudes of discrimination
towards our community based on a
view that these lives are of less
worth than others or some kind of
disadvantage. They are in direct
conflict with the basic freedoms and
rights of people with Down syndrome
and other disabilities.
A disability rights framework casts
serious doubts over the intention,
It is with the CRPD principles in mind
that Saving Downs and the Spina
Bifida Association of New Zealand met
with the Chief Commissioner of the
New Zealand Human Rights
Commission (HRC) in October 2011.
We met the Commissioner to discuss
our concerns relating to the practice
of antenatal screening in New
Zealand and the impacts on the
Down syndrome and Spina Bifida
communities. At that meeting the
Commissioner agreed to formally
receive our detailed submission on
the application of the CRPD in relation
that have ratified the CRPD.
International disability rights
expert Janet E. Lord has recently
published an extensive paper on the
application of the CRPD in relation to
disability screening programmes.
Her qualifications in this field are
impeccable. Ms. Lord participated
in all of the drafting of the CRPD,
serving as advisor to lead
governments, expert to the United
Nations and legal advisor to Disabled
Peoples International. She is a
leading expert on the CRPD,
publishing widely in the field and
biases and consequences of such
to antenatal screening for disability.
screening programmes according to
Seven organisations resolved to
law and policy reform in more than
formally support that submission
30 countries worldwide.
a modern social understanding of
disability that is underpinned by
the principle of the dignity of all
human life.
In 2006 the United Nations adopted
the Convention on the Rights of
Persons with Disabilities (CRPD). The
CRPD formally introduces a disability
narrative into the wider human rights
framework. The basic principles
of the CRPD are respect for human
difference, non-discrimination,
inclusion and participation.
These are all directly relevant to
antenatal screening programmes,
as they impact on whether persons
National News | p20
including Down Syndrome
International and the New Zealand
Down Syndrome Association. The
group submission requested the HRC
to develop an action plan where there
are areas of conflict between the
screening programme and the CRPD.
The HRC have now reviewed the
submission and are currently
developing a work plan around
designing and implementing disability
Ms. Lord’s paper is worth reading in
detail for those wishing to pursue
concerns around disability screening
from a disability rights perspective.
The following are extracts of the more
pertinent aspects of her paper. The full
paper also includes a case study of
the New Zealand situation and the
work of Saving Downs and the Spina
bio-ethical issues and disability that
Bifida Association of New Zealand who
will incorporate this work. A formal
are leading the international arena
response from the HRC is expected
in this field, so it is worth reading for
this month.
that alone.
This is the first initiative of its kind
For more see savingdowns.co.nz
US Statistics: The Life Expectancy Of People
With Down syndrome
By Lisa Wade, PhD, Jun 10, 2013
Most of us familiar with Down
syndrome know that it brings
characteristic facial features and
delayed or impaired cognitive
development. People with Down
syndrome, however, are also more
vulnerable than the general population
to diabetes, leukemia, and infectious
and autoimmune disease, and about
40% are born with heart defects.
improved health in the general
population such as socioeconomic
status, education, community
support, medical or surgical treatment
of serious complications, or access
to, use of, or quality of preventative
health care.
the wide racial gap in health outcomes
and access to care. We see data with
similar patterns most everywhere we
look. As examples, pre-term births,
cancer diagnosis and treatment,
and likelihood of living near a toxic
release facility.
This is just one striking example of
From sociologicalimages.com
For most of history, the life
expectancy of people with Down
syndrome was very low. But, with
advances in knowledge and access to
health care, life expectancy has risen
dramatically, especially for
white people.
The US Centers for Disease Control
explain that severity of Down
syndrome does not vary by race, so
most likely the cause of the gap in life
expectancy is differences in the
quantity and quality of health care.
Possibilities include differences in
factors that may be associated with
Memory Training Study Points to Possible
Benefits for Children With Down syndrome
A study, conducted by researchers
short periods of time (short term and
working memory training may
at Down Syndrome Education
working memory) than other people.
improve memory function for children
International and published today in
These memory systems impact many
with relatively limited working
the American Journal on Intellectual
areas of learning, including the
memory skills.
and Developmental Disabilities,
acquisition of vocabulary, grammar
suggests that adaptive working
and reading skills. Improving short
DSE therefore set out to explore if
memory training might offer sustained
term and working memory function
similar results might be achieved for
benefits for young people with
might therefore be expected to
children with Down syndrome by
Down syndrome.
have important consequences for
conducting a randomized controlled
educational outcomes.
trial of Cogmed Working Memory
People with Down syndrome tend to
Training with children with Down
be more limited in their abilities to
Studies published in recent years
syndrome aged between 7 and
store and manipulate information over
suggest that computerised adaptive
12 years.
International News | p21
The study was funded by The Baily
term memory and visuospatial
can deliver improvements in verbal
Thomas Charitable Fund and Down
working memory, compared to children
as well as visuospatial memory,
Syndrome Education International, and
not undertaking training.
and (importantly) if these gains
the findings are published today in the
American Journal on Intellectual and
This study suggests that adaptive
Developmental Disabilities.
working memory training could be a
practical and useful intervention for
subsequently lead to improvements
in language, literacy and wider
academic skills.
We found that children who undertook
children with Down syndrome.
25 sessions of computerized memory
However, further research is required
For more on this study see the Down
training, on average, achieved
to confirm this. Future research is
Syndrome Educational International
important gains in visuospatial short
needed to explore if memory training
website at www.dseinternational.org
New Research Has Potential To Change
Treatment Options For Down syndrome
SALT LAKE CITY — New research coming out of the University of Utah could
potentially change the treatments for people with Down syndrome.
In the study, Dr. Julie Korenberg
and her team at the University of
Utah’s Center for Integrated
Neuroscience and Human
Behavior used functional MRI to
study how a brain with Down
syndrome functions.
For two years, the neuroscientists
studied the brains of 15 people
with Down syndrome and
compared their brain images to
those of 15 “healthy” control
patients. It’s the first time it’s
ever been done, and Korenberg
said the discoveries are
groundbreaking.
“You’re not just looking at how
big or small, or what shape
something is. You’re actually
watching the brain as it
functions,” Korenberg said.
What researchers discovered
was “the regions (of the brain)
that are close together, in the
Down syndrome brain are far too
over-connected, as if there are
too many roads connecting two
villages or cities in Utah,”
Korenberg said. Additionally, they
found that regions that are farther
apart aren’t connected at all in a
Down syndrome brain.
International News | p22
Korenberg compared the images
to someone taking a sleeping pill.
“When their brain is fuzzy, it’s
harder to connect thoughts.”
The new brain-imaging research is
giving mothers like Nancy Nelson
greater hope. She was 18 weeks
pregnant when she found out her
son Skyler would be born with
Down syndrome.
“That began a journey of learning
about Down syndrome and what it
would mean for our family and for
him,” Nelson said.
Skyler is now 13 years old. As he
grows older, his mother worries
about his future. “That he can be
a contributing member to society
is a concern I think he will face,”
she said.
Now the information compiled by
Korenberg and her team will help
doctors to come up with more
effective treatments for people
like Skyler.
“It opens up a whole new world
of possibilities for accelerating
therapeutics with Down syndrome
and for other developmental
disorders (such as autism,
Alzheimer’s disease and anxiety),”
Korenberg said.
Findings from the University
of Utah study were published in
the journal NeuroImage:
Clinical. Read the study in its
entirety by visiting
www.sciencedirect.com.
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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