FLYING WITH CHARLIE YOU HURT MY BROTHER'S HEART TIME TO HEAL LIBBY LANDS THE LEAD ROLE - IHC
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FLYING WITH
CHARLIE
YOU HURT MY
BROTHER’S HEART
TIME TO HEAL
LIBBY LANDS THE
LEAD ROLE
FEBRUARY 2020
Personally speaking
In our first IHC Board meeting each year we allocate time to our
long-term strategy, to tracking our progress and considering our
priorities for the next 12 months.
This year it is inevitable that much discussion will focus on our response to
people’s changing expectations and how we, as the IHC Group, respond to the
chronic underfunding of disability services and lack of housing for people in
need. This will be no easy task. Leadership from government has been lacking
for many years and without the sectors driving a coherent agenda we will likely see more
politics than progress in this election year.
Our senior staff serve on boards and on disability sector and government working groups.
Using our connections, our strength and our expertise, we advocate for better lives for
people with intellectual disabilities, which has been a fundamental principle of IHC for our
entire 70-year history. Housing need and wider disability issues have direct impacts on
people with intellectual disabilities and, along with providing disability and housing services,
we advocate in these areas.
Each election year we run focus groups and candidate events in order to give people an
opportunity to tell us their most crucial issues and to question political candidates directly.
As one of New Zealand's major non-government social housing providers we will also be
surveying our tenants to ensure we are advocating and helping highlight the issues they
consider most important.
We know that many families find accessing the right information, support and services
incredibly challenging. This year our Annual Appeal centres on a family struggling to get the
right support for their child who, without a formal diagnosis, was slipping further behind and
becoming more isolated at his school. Our local IHC Family-Whanāu liaison was key in turning
that child’s life around.
While it’s important to make sure we are standing up for people with intellectual disabilities
nationally and internationally, it’s equally important to recognise the impact we can have
on individuals and their families. I’d like to personally thank the many of you who are so
generous in your support.
Ralph Jones
IHC Group Chief Executive
2 Community Moves | February 2020
February 2020
CONTENTS
Sister pleads for tolerance Page 3 Sister pleads for
after neighbours throw rocks
tolerance after
neighbours throw
rocks
An assault on her young brother Page 4 Six new homes may
be the first of many
upset a Te Awamutu woman for Tauranga
so much she wrote to her local Page 5 Flying with the
newspaper urging the community boy who loves
Thunderbirds
to show some understanding of
people with autism. Page 6 Libby lands the
leading role
Rhiannon Venk says neighbours threw Page 7 ‘I might be the first –
rocks and hosed nine-year-old Ronan I don’t want to be
Cavanagh, who is hooked on collecting the last’
wheelie bins from up and down Frontier Page 8 Early Christmas
Road. getaway was the
perfect time to heal
In a letter to the Te Awamutu Courier
late last year, she described how Page 10 Jake’s job is changing
Ronan had come home crying with his life
large bruises on his legs, and then in a Rhiannon Venk and her brother Ronan Cavanagh Page 11 WORLD-IHC tote bags
separate incident had water squirted at with a few of his favourite things – the Frontier are hot sellers
him as though he was a stray dog. Road wheelie bins.
Page 12 Advocates see gaps
for adults at risk
“Due to his disability and due to his “We did that straightaway when it
behaviour and due to his own little started becoming quite an issue. Page 13 The Change Maker is
world, I am 100 percent confident that Some mornings I would wake up and coming
he will never ever understand why have 20 bins on my property and I Page 14 Researchers urge
grown men and women, who should be would have to try to find out where the people to get their
role models and trusted, would throw bins came from. He has been playing eyes checked
rocks at him or blast water when he with the bins since he was about two. Page 15 Hard work pays off as
enters their property to touch their bin,” But tolerance is wearing thin with quite Ryan gets behind the
she wrote. a few of the neighbours.” wheel
“You hurt my little brother’s heart today. Rhiannon says Ronan was able to
And he doesn’t understand what he did identify the houses where he had CHECK US
wrong.” been assaulted, but enquiries by OUT ON
Police had not got to the bottom of FACEBOOK
Rhiannon says she wants people to
what happened. KEEP UP WITH WHAT IHC
realise that Ronan is not being naughty
IS DOING – FOLLOW OUR
when he collects the bins. Ronan hasn’t stopped collecting bins CAMPAIGNS AND BE THE FIRST
on recycling days, but now avoids TO READ OUR STORIES AND SEE
“He absolutely loves wheelie bins,” OUR VIDEOS.
the area where he was assaulted
says Mum Nicole. “He will go for miles
and collects them from the opposite WE'LL KEEP YOU POSTED WITH
to find a kind we don’t have. He likes
side of the road. He has also shifted NEWS AND VIEWS ACROSS THE
to rearrange them and make sure that IHC GROUP AND THE DISABILITY
his focus to the man who collects the
the neighbours have the correct stuff in SECTOR.
rubbish bags.
their recycling bins.” WE’D LOVE TO HEAR FROM YOU.
“Wednesday is a huge day for us,”
Two years ago, the family did a SO JOIN THE CONVERSATION.
Rhiannon says. “He was outside this
letterbox drop to neighbours to explain FACEBOOK.COM/IHCNEWZEALAND
Wednesday from daybreak to sunset
that Ronan has autism and to ask them
waiting for Matt.”
to be patient if they found their bins COVER IMAGE:
were missing. They asked them to put She hopes that 2020 will bring more Charlie and Betsy Ussher and Bugs
their street numbers on the bins so the understanding of Ronan and people Bunny at Warner Bros. Movie
family could return them. with autism. World on Queensland’s Gold Coast.
See story page 5.
February 2020 | Community Moves 3
February 2020 | Community Moves 3
New tenant Raymond Holloway, Gate Pā resident Teisha Paratene and Associate Housing Minister Kris Faafoi celebrate the opening of six
new houses in Tauranga.
Six new homes may be the first of many for Tauranga
IHC Group’s property Accessible Properties Chief
Executive Greg Orchard says
company, Accessible
the aim of the Cameron Road
Properties, has opened six development is to create great-
new homes in Tauranga for looking homes that also meet
people struggling to find the demand and needs of the
community.
housing.
“We know that we need a
Associate Housing Minister Kris community-wide, multifaceted
Faafoi cut the ribbon on the new approach with great engagement
Raymond Holloway is finally inside his new
development at 878 Cameron with all the players involved in place, which he watched being built.
Road. making places work,” says Greg.
approach – a diverse range of
The homes are part of Accessible It’s all part of Accessible Properties’
housing types overlooking the
Properties’ plans to help address commitment to the region.
street and shared communal
the Tauranga housing shortage, Accessible Properties wants to
areas,” Greg says. “In addition, we
and the Minister was singing its replace 140 former state homes in
are continually working to improve
praises. Tauranga with more than 400 new
the quality of the housing we
townhouses and apartments.
“I welcome Accessible Properties’ provide to tenants.”
latest contribution to deal with Greg says housing wellbeing
Accessible Properties is also an
New Zealand’s housing shortage, has become an urgent issue for
important partner to IDEA Services
and I acknowledge all the Tauranga and the Western Bay of
and the people we support. In the
individuals, organisations and Plenty, and Accessible Properties
past year, Accessible Properties
communities who have stepped up is taking action. “We think we
has worked closely with IDEA
to respond,” Minister Faafoi said at can make a real difference to this
Services to supply new properties
the ceremony. community, which has become one
or to modify properties to meet
of the most unaffordable places to
New tenant Raymond Holloway people’s changing needs and
live in the country.”
was pleased to finally see his expectations.
home, which he had watched The ambition is to increase new
Accessible Properties also
being built from his previous supply by at least 300 homes
completed 40 development or
accommodation across the road. within 10 years, which would
modification projects on properties
deliver a 26 percent increase in
The former serviceman, who used by IDEA Services or
the organisation’s housing stock.
is deaf, told The Bay of Plenty tenanted by individuals eligible for
Times: “It’s a new lease on life.” “We want to see a master planning Supported Living.
4 Community Moves | February 2020
Flying with the boy who loves Thunderbirds
Charlie Ussher loves the TV
animation show Thunderbirds
so much that he fantasises
that a plane he is travelling in
will explode and Virgil Tracy
will come to the rescue in
Thunderbird 2.
But talking about aircraft exploding
and bombs going off is a high-risk
activity when you are travelling by
plane, and high stress for Charlie’s
parents Lisa and Mark.
Last year the family flew to
Australia’s Sunshine Coast to
visit Charlie’s grandfather and
the theme parks. Lisa says she
had been talking about the trip
to see her Dad for three or four
years, but they had to wait for
11-year-old Charlie to get over his
preoccupation with explosions and
other issues relating to his autism.
“His whole world is space and
aircraft and Thunderbirds,” Lisa says. Charlie Ussher at Sea World on his family holiday to Queensland.
“We were concerned that he would
Charlie decided to run. But the visual and hearing impairments.
have a meltdown on the plane.
officer wouldn’t budge. In the end Travellers can request a lanyard
But we were mainly concerned
Charlie’s sister Betsy, aged seven, to wear through the airport from
that because of his love of
went first and it was her job to check-in to departure to allow
Thunderbirds, he wanted our plane
manage her brother. Lisa says they airport staff to recognise that they
to blow up so the Thunderbirds
told Betsy that if Charlie ran, she may need extra help.
would come and rescue us.”
was to run with him.
A sensory map is available, which
But after talking to a lot of people
Mark says he got to the point identifies high-sensory and low-
about their travel strategies and
where he decided that if Charlie sensory areas. This is to help
arming themselves with rescue
ran, the airport would have to travellers prepare for additional
lollies to be eaten when Charlie felt
handle it. “I was pretty angry.” noise and crowded areas and to
scared, they headed to Australia in
find quieter areas.
July. They booked the same airline Lisa says as it turned out “both of
both ways, and the same seats, them were standing there waiting The airport website provides
because Charlie always likes to for us”. ‘social stories’ to walk passengers
follow the same path home. through the international
In September last year
departures and international
Charlie also tends to run when he Melbourne Airport launched a
arrivals processes in an easy-to-
is stressed, and at Brisbane Airport Hidden Disability Programme
understand format. Melbourne
Lisa and Mark faced their biggest at its international terminal
Airport staff will all be trained in the
hurdle. An immigration officer to support travellers needing
Hidden Disability Programme.
decided that Charlie should be the special assistance. It was the first
first to go through the face scanner Australian airport to introduce Lisa says the Hidden Disability
at passport control. Lisa says they the programme for travellers with Programme at Melbourne Airport is
tried to explain that either she autism, anxiety issues, mental good news and would have been
or Mark should go first in case health conditions, dementia, and very helpful for the family.
February 2020 | Community Moves 5
Libby Hunsdale is spending her summer preparing
for her role in new feature film Poppy.
Libby lands the leading role
Young Whanganui actor newspaper saying the filmmakers in shows. “But the camera is
were looking for a girl with Down something different,” she says.
Libby Hunsdale is to play a
syndrome who was ready to tackle
role close to her heart in the anything. Libby impressed writer/ The IHC Foundation has
feature film Poppy, being director Linda Niccol (Second- contributed $25,000 to provide
Hand Wedding) with her vivacious acting coaching for Libby. This
made on the Kāpiti Coast
personality and ability to deliver a will involve performance-related
north of Wellington. workshops, rehearsals with
performance. “Libby is a real find.
Poppy is a story about falling in She embodies the spirit of Poppy. other key actors and one-on-one
love, learning to drive and entering She’s a true performer,” Linda says. coaching with Miranda Harcourt.
the local car burnout competition, Miranda has worked as an acting
Poppy is the story of a young coach all over the world, with
and Libby is getting primed for
woman with Down syndrome who stars including Nicole Kidman,
her role with some hands-on
wants the same opportunities as
experience at Whanganui’s Reese Witherspoon and Kiwi actor
others her age. She takes matters
Midtown Motors. and comedian Rhys Darby.
into her own hands when her over-
Garage owners Raj Patel and protective brother holds her back Miranda Harcourt says Poppy is
Janine Chalk were happy to let from achieving her ambition to a story firmly centred in the world
Libby shadow their apprentice Jon become a motor mechanic. of self-determination. “She is a
Morrison before she headed south wonderful character leading a
for filming. Libby’s grandfather, Libby says she’s over the moon
to be cast and she already feels unique and wonderful story.”
well-known local stock-car driver
Ormie Andrews, had a long a connection with the character. The Poppy Pictures production
association with the garage. He “What I love about Poppy is that is being supported by the New
was a member of the Wanganui she’s ambitious and wants a career. Zealand Film Commission,
Warriors Superstock Team. I do too. Poppy doesn’t care about with funding from the 125
what people think of her and the Fund created to celebrate the
Libby, 18, a student at Whanganui fact she has Down syndrome. I
Girls’ College, was cast for the anniversary of women’s suffrage.
really relate to Poppy. We could be
leading role of Poppy after a It is also supported by NZ on Air
sisters,” says Libby.
nationwide search. She lives with alongside private supporters and
her grandmother Barbara Andrews, Barbara says Libby has studied sponsors. TVNZ will screen the
who saw an article in a Sunday drama and dance and has been film in New Zealand.
6 Community Moves | February 2020
‘I might be the first – I don’t want to be the last’
Sir Robert Martin KNZM – one of New Zealand’s
newest knights and disability activist.
When he returns to the have done it without the help of
United Nations in New York People First and IHC. Honour for IHC patron
“It’s also for the people who are Lady Gillian Deane was
next month, Sir Robert Martin
not with us, who never got a made a Companion of
will carry his country’s highest the New Zealand Order
chance to tell their stories.”
honour. He was made a of Merit for services to
Sir Robert, who is married to philanthropy, particularly
Knight Companion of the
Lynda and lives in Whanganui, for rare disorders, the arts
New Zealand Order of Merit says he still feels the presence of and youth. Lady Deane is a
in the New Year Honours the people who he lived with in Patron of IHC New Zealand
for services to people with some of New Zealand’s grimmest with her husband Sir
institutions. “I do because those Roderick Deane.
disabilities. people are really important to me.
It’s another first for him. He is I have never forgotten my roots.” “Still people are invisible around
the first New Zealander with the world. I often ask, where are the
In November he gave evidence to
an intellectual disability to be people with learning disabilities?”
the Royal Commission of Inquiry
knighted. He was also the first to into Abuse in Care about his own Sir Robert has been involved with the
be elected to a UN Human Rights experiences of abuse and how he self-advocacy movement for people
Treaty Body in 2017, and the first was made to feel he was nobody. with learning disabilities for more
to chair a meeting within a UN than 30 years. He is a Life Member
session in 2018. Sir Robert says he regards of People First New Zealand Ngā
education as one of the major Tāngata Tuatahi, the national
“I might be the first person with issues facing people with disabled persons organisation,
an intellectual disability, but I don’t intellectual disabilities and he is originally set up by IHC.
want to be the last. It seems that I right behind IHC’s work in this
am the first person to do this and area. “People are still falling He is serving a four-year term as
to do that, but for me it’s making a through gaps. Education is not a an independent expert on the UN
way for other people to follow,” feel-good thing; it’s a basic human Committee on the Rights of Persons
Sir Robert says. right. Everybody has a right to an with Disabilities and plans to stand
for re-election this year. Sir Robert
education – to be assisted to be
“I was extremely humbled. It’s has held roles within Inclusion
who they can be.”
not for me, it’s for people with International and was National Self
disabilities who got me where I am He says disabled people need to Advocacy Advisor and Trainer for
and the people who assisted me take their place in the world and IHC New Zealand between 1991
over the years,” he says. “I couldn’t show what they are capable of. and 2010.
February 2020 | Community Moves 7
Early Christmas getaway was the p
Just before Christmas Suzanne
and Chris Leigh had their first
break away together in a long
while. It wasn’t for long – one
Saturday night away. And they
didn’t go far – just across town.
“I thought I just need to do the
easiest thing at the moment,”
Suzanne says.
Suzanne was diagnosed with
breast cancer in 2017 and there
have been many rounds of
treatment since the cancer spread
to her sternum, pelvis and back.
The Christchurch couple stayed a
night at Peppers Clearwater Resort
through IHC’s ‘Take a break with
us’ programme. The pre-Christmas Friends from the ‘Down syndrome tribe’ get together to celebrate Christmas and whenever else they can manag
break was booked by Jyoti
Scarsbrook, one of the ‘tribe’, as
Suzanne calls their solid group of
friends, all of whom have children
with Down syndrome.
For the past 18 years, following the
birth of their daughter Savanna,
the couple have been part of
this close-knit group of parents
they met through The Champion
Centre, which provides early
intervention services for infants
and young children in Canterbury
with significant disabilities.
The mothers bonded over the
weekly visits to the centre and
since then the families have always
Fresh from their break, Suzanne and Chris shop for trees with (from left) Savanna, Jesse and
been there for each other, offering Alani.
support and sharing strategies. “It’s
but for Chris as well. He has had of the cancer. “We have got to the
our tribe; it’s the Down syndrome
a lot of stress. The other times we place where there is nothing new,
tribe,” Suzanne says.
have been away together have so it’s time to rest and heal.” She
Jyoti’s plan had been to get as been for appointments”. However, says they did that sitting, chatting
many of their group away together supporting Suzanne through her and looking out at the lake. Then
as possible to support Suzanne illness affected Chris’s job and he it was home on Sunday to go
and Chris, but with everyone’s pre- had to find a new one. Christmas-tree shopping with the
Christmas commitments it was just kids.
too tough to organise. Just as the pair left for the resort
there was something to celebrate. The following weekend they joined
Suzanne says she and Chris Suzanne’s doctors reported that their friends for their Christmas
needed to rest – “not just for me there had been no further spread party, as they always do. The get-
8 Community Moves | February 2020
e perfect time to heal Take a break
gives 144 families
a breather
A total of 144 families planned,
booked or took a break
from the demands of being
carers in 2019, thanks to the
IHC ‘Take a break with us’
programme.
The programme, which started
in mid-2017, is partly funded by
the Zena Elsie Orr Memorial
Trust and the IHC Foundation,
and supported by Millennium &
Copthorne Hotels NZ, Waipuna
Hotel and Conference Centre and
IHC donors.
ey can manage it. While some head to favourite
holiday spots, many families
together included seven couples. choose to stay in their home towns
During the year the women because they want to be close to
meet more often than the men, their children or family members if
grabbing the chance to catch up they choose not to take them, or
while their children with Down it’s simply easier if they don’t have
syndrome are attending the Up to travel far.
Club.
In selecting hotels, ‘Take a break
“This group has supported me with us’ organisers try to limit the
and Chris through this diagnosis; travelling time to no more than
they all are a tremendous support three hours. We use holiday homes
with phone calls, prayers, meals, for larger families.
cleaning, baking, flowers and
many words of encouragement. Only members of IHC can apply for
Jyoti came to every chemotherapy the break.
Jyoti Scarsbrook, pictured with her daugh-
session, which helped keep my ter Georgia, has been encouraging friends ‘Take a break with us’ breakdown
mind lifted,” Suzanne says. in her Down syndrome group to take some
time out through the IHC ‘Take a break with for 2019:
“It’s just a friendship that has gone us’ programme.
• 144 short breaks – 487 actual
on for all these years,” Jyoti says.
room nights used as some
“It’s just good to know you are not
families need more than one
alone.”
room
Jyoti and husband Paul, along with
one other couple from the group, • Most referrals were self-
will be taking breaks with the referrals; the remainder
‘Take a break with us’ programme came from other providers,
early this year. organisations or other families
• Accommodation providers
Chris and Suzanne had a lakeside room
– more than 50 providers
at Peppers Clearwater Resort near
Christchurch. throughout New Zealand.
February 2020 | Community Moves 9
Jake Miller (seventh from left) with his Tru-Bilt workmates in the manufacturing workshop.
Jake’s job is changing his life
Jake Miller has landed a in Dunedin to find the right Danielle McConnell of
job working for a Dunedin person and Jake, who attends recruitment agency Human
IDEA’s Switch youth service, Connections Group says if
manufacturer of industrial
was the successful candidate. there’s an issue, Jade arrives at
doors. He is gaining He is on a one-year contract Tru-Bilt and can come up with an
confidence and making new subsidised by the Ministry of answer off the top of her head.
friends. It is changing his life. Social Development’s Mainstream “She is involved at every level.
Employment programme. I am privileged to work with
Jake is 21 and has autism, and
Jade, who can provide initiatives
this is his first proper paid job Mark says working for Tru-
and strategies that I wouldn’t
since he left Taieri College in Bilt has been a steep learning
have thought of.”
2016. He wants to work. He has curve for Jake, but also for the
been lending a hand at his father company in in understanding his Jake says he likes it at Tru-Bilt.
Michael’s kitchen joinery workshop capabilities and knowing how best “I feel really happy and really
and, even now when he has to support him. On Mondays and great – and it gets me out of
regular employment, he still works Wednesdays Jake works in the the house,” he says. “I like the
a day a week as a volunteer car manufacturing workshop where people as well. I like it all.”
groomer. he might be lifting, sweeping or
But being willing to work is not packaging. On Fridays his job is to Shayne Miller, Jake’s Mum, says
enough. One of the toughest clean the offices. he is more focused. “He has
things facing young people with a purpose to get up and get
Having a willing team around organised in the mornings.” He is
disabilities is finding a job once
Jake has made all the difference also walking further – between
school is over. In Jake’s case it was
to him being able to complete his Dad’s workshop and Tru-Bilt
his employer who came looking.
tasks. One of his chief supporters – and gaining in confidence.
Mark Taylor, General Manager is IDEA Services Support Worker
of Tru-Bilt Industries, decided he Jade Bray, who has come up with Jake's growth in confidence is
wanted to offer an opportunity visual prompts to help Jake know “one of the things that gives us a
to a young person with a how many bolts need to go into a real buzz”, Mark says. “His Mum
disability. He had a recruitment package, or which cleaning tasks says his confidence levels have
agency approach IDEA Services need to be completed. gone through the roof.”
10 Community Moves | February 2020WORLD-IHC tote bags are hot sellers
Dame Denise L’Estrange-Corbet with artists Christina Van Der Hooft, Joanna Lynskey and Jordan Chow.
WORLD brand tote bags have been so supportive of offering a free signature on all her
featuring stunning designs by the project. A lot were sold as Cats bags.
Christmas presents, and a company
IHC Art Awards artists were IHC General Manager
bought all their customers bags
hot sellers in the lead-up to instead of bottles of wine, which
Communications Gina Rogers is
Christmas. excited by the success of the tote
was a really nice thing, to support
bag project. She says WORLD
WORLD celebrated its 30th such a worthwhile cause.”
and Dame Denise have shown a
birthday with the release of the huge commitment to people with
Dame Denise couldn’t say which
special limited-edition reusable intellectual disabilities, including
designs were more popular.
bags to support the IHC Art artists. “The IHC Art Awards have
Awards. Profits go to the artists “We printed the same amount in run for 16 years and Dame Denise
and the IHC Art Awards. each, and I felt people were just has been a key part of its growing
happy to support the cause, so success,” says Gina. “She has
The four designs are Budgie by
if the design they chose was not been generous with her artistic
Andrew Young, Zebra by Jordan
available, they were equally happy knowledge and time, both as a
Chow, Untitled Orange Dots by
to choose another,” she says. public ambassador and behind the
Christina Van Der Hooft and Cats
scenes with individual artists.”
by Joanna Lynskey.
“WORLD will be working on this
project again for a launch later this Denise’s association with the IHC
“To date we have sold 700 of the
year. I feel it is something that has Art Awards started in 2009 when
IHC collaboration bags, which
great growth potential for IHC.” she became a judge. In 2017
we are very pleased with,” says
she became the IHC Art Awards
WORLD co-founder Dame Denise
Artist Joanna Lynskey, who also Ambassador, travelling the country,
L’Estrange-Corbet.
works for WORLD, was happy to meeting artists and encouraging
“People from all over the country add some value on launch night by them to enter the awards.
February 2020 | Community Moves 11Advocates see gaps
for adults at risk
Photo by Andrew Neel on Unsplash
A merger of two organisations Te Kahu Haumaru – the Cloak they are recognising the need and
working to protect the interests of Safety – gifted by the mana responding to need,” she says.
whenua of Wellington Te Āti Awa
of adults with intellectual Taranaki whānui.
PAT was established in 1967 by
disabilities will provide stronger families supported by IHC who
Erika Butters, PASAT National wanted to ensure the wellbeing
support for people at risk from Advocacy Director, manages the of their disabled family members
abuse, harm and neglect. The advocacy side of the organisation, once parents had died. The
merger will also build pressure which now includes short-term organisation has recently been
advocacy and supported decision- restructured from having a largely
for a mechanism to safeguard making among the services it volunteer workforce to one
adults between the ages of 18 offers. employing professional advocates
and 64. Sue Hobbs, Safeguarding Adults and ensuring quality and
National Director, manages the consistency of services. PASAT
In 2019 the Personal Advocacy employs 13 advocates.
safeguarding response, which now
Trust (PAT) and the Safeguarding
extends beyond Auckland, and Lifetime membership and
Adults from Abuse (SAFA)
has widened to include services advocacy is funded by the
collective joined forces to
alongside advice. payment of fees. Short-term
strengthen the advocacy and
safeguarding services on offer to Erika says adults at risk are often advocacy is paid for by the
adults. The merged organisation is invisible, but the new organisation person who has requested it or,
called the Personal Advocacy and will be able to gather evidence if a disabled person or family
Safeguarding Adults Trust (PASAT). of support needs to take to cannot afford to pay, through
Since January 2019, PASAT has Government. “The partnership has philanthropic funding. Supported
had enquiries or referrals from broadened the scope to do more, decision-making, at present
50 adults at risk. Its role is well to help more. The trustees are not offered in the MidCentral District
articulated by its new Māori name, looking for business opportunities, Continued on page 13
12 Community Moves | February 2020(From left) The Independence Collective's Nathan
Martin, Cameron Stichbury, Neville Pugh and
Janie Tutton are ready to market their new range.
The Change Maker is coming
At Beervana 2019, a group of Duncan’s Brewing Company in The collective members say its
young Kāpiti entrepreneurs Kāpiti will produce the pale ale name says it all. “We are the
and Moa Brewing Company in change we want to see in the world
unveiled their new brand Blenheim will make the pilsner, for both ourselves and for other
of craft beer, Change while Auckland’s Behemoth people with intellectual disabilities.”
Maker. Now it’s become a Brewing Company will produce
“We have got an amazing story to
commercial reality. the IPA and Sawmill Brewery
tell,” Gordon says. He says the beer
the XPA.
is being made by award-winning
The Independence Collective has
Nathan Martin, Janie Tutton, brewers and he is confident it will
commissioned four independent go down a treat.
brewers to make 40,000 litres Cameron Stichbury and Neville
of the new Change Maker Pugh are members of The Change Maker began life as
range – pale ale, pilsner, IPA and Independence Collective, which Neville, a craft pale ale, brewed in
XPA – and it's scheduled to hit is managed by IHC's Gordon partnership with brewer George
supermarket shelves throughout Cumming. Gordon is finalising Duncan. The group has been
the country this month. a distribution agreement with selling their beer since October
Foodstuffs to get the bottles on 2018 to Kāpiti bars and cafés, as
Each brewery will make 5000 the shelves of New World and well as online and at selected
litres (or 10,000 bottles) of beer. Liquorland outlets. events.
Continued from page 12
Health Board region through the Its integrated response to There is also a safeguarding
Mana Whaikaha disability support safeguarding adults at risk was response in MidCentral as part
system prototype, is funded by honed in Auckland in 2016, of Mana Whaikaha. Sue says in
the Ministry of Health. working with Waitematā Police 2020 PASAT will continue to work
and the Waitematā District Health with adults at risk in situations that
SAFA started in 2010 and
Board. During a six-month pilot may include anything from financial
came out of the self-advocacy project 40 adults were removed abuse to family violence. “We are
organisation People First New from unsafe situations and not a crisis response organisation.
Zealand, and later broadened its connected with support and We are there to work with police
scope to include any adult at risk. services. and other agencies as appropriate,”
Sue Hobbs says its merging with
Sue says.
PAT has allowed the collective to Aside from continuing its work
move from solely offering advice in Auckland, PASAT is working Funding from the IHC Foundation
to being more responsive. “We in partnership with Safeguarding supported the redevelopment of
are now able to provide a service Vulnerable Adults Taranaki to PAT and the subsequent merger of
to people.” deliver a SAFA service in Taranaki. the organisation with SAFA.
February 2020 | Community Moves 13Researchers urge people to get
their eyes checked
Researchers from the
Department of Ophthalmology
at the University of Auckland
are putting out a final call
for people to get their eyes
checked – which may save
their vision.
By early March 2020, the project
team hopes to have signed up
200 people in a study to find out
how common keratoconus is in
New Zealand. The disease causes
progressive vision loss due to the
thinning and bulging of the cornea,
which is the clear protective
covering of the eye.
In 2017 the team tested 98
athletes with Down syndrome at
the Special Olympics National
Summer Games in Wellington.
They found that as many as one in
Joyce Mathan (right) and Heather Reynolds with a KIND 21 study participant.
three had keratoconus.
She says that in the past people If change does occur, a referral
The results inspired the
could lose their vision and the only for corneal collagen cross-linking
Keratoconus in Down syndrome
treatment on offer was a corneal will be provided. This is the
(KIND 21) project – the first
graft, using donated corneas. standard treatment used to slow
research of its kind in New
“A corneal graft is end-stage down or stop keratoconus from
Zealand. So far, the KIND 21 team
treatment,” Joyce says. “This can progressing. The treatment is fully
has provided comprehensive funded through the public health
be avoided by timely corneal
checks for 100 people. system.
collagen cross-linking.”
Optometrist Joyce Mathan, who Because this study is part of a PhD
The optimal age for screening
is working on the project for her project there is no charge for the
PhD, says the team wants to draw is between 10 years and the
early to mid-teenage years. The appointments. The assessments
attention to this screening, now are held at the University of
that corneal collagen cross-linking study is open to anyone with
Auckland, but if there is a need
treatment is available. She says Down syndrome 10 years or
for follow-up treatment, this can
the aim of the study is to provide older, living in New Zealand and
be done locally. The project team
evidence about keratoconus in able to express agreement to
also includes Dr Samantha Simkin,
people with Down syndrome and participate. An assessment to
Dr Akilesh Gokul, Professor Dipika
then to raise awareness among detect keratoconus is provided as Patel and Professor Charles
individuals, families and support well as a general vision and eye McGhee – all from the Department
people of the need for regular health assessment. Participants of Ophthalmology, University of
checks. and support people will be told if Auckland.
keratoconus is detected.
Heather Reynolds, a registered To find out how you can
nurse and member of the KIND Follow-up visits may be needed to take part, please contact
21 team, says the treatment that monitor the cornea for changes if Joyce Mathan at
is available now is miraculous. keratoconus is present. joyce.mathan@auckland.ac.nz
14 Community Moves | February 2020IHC NEW ZEALAND
INCORPORATED
ihc.org.nz
IHC BOARD
Neil Taylor, Chair
Ralph Jones, Chief Executive
Dr Lynne Lane
Michael Quigg
Barbara Rocco ONZM
Tony Shaw
Suzanne Win
Pauline Winter QSO
IHC MEMBER COUNCIL
Barbara Rocco, Chair, ONZM
Ryan Mollgaard, pictured with Sara Hillier-Jones, was confident to drive through the Tauranga city centre on Mark Campbell
his first driving lesson. Janet Derbyshire
Hard work pays off as Ryan gets
David Howorth
Dr Diane Mara MNZM
Vicki Owen
behind the wheel Kay Pearce
Robyn Stark
Ryan Mollgaard has mastered the A perfect score is 35, and she knew PATRONS
Ryan was ready to attempt the test Sir Roderick & Gillian, Lady Deane
theory – now he is behind the CNZM
when he was scoring in the 30s. On
wheel of a car and practising to
his first attempt in October he missed NZ LIFE MEMBERS
take his driving test. four questions – you are allowed only Dr Terry Caseley
three misses. But in December he Sir Roderick Deane KNZM
Ryan, 24, wants to work as a gardener,
passed with all 35 questions correct. Jan Dowland MNZN
but for that he needs his own transport.
John Hanning
A year ago, the Tauranga man started “He was over the moon. It was John Holdsworth ONZM
studying for his learner licence, working wonderful. It was worth every minute,” Shelley Payne
with IHC volunteer Sara Hillier-Jones. she says. “His perseverance has just Lynne Renouf
been amazing.” Barbara Rocco ONZM
“I got my provisional licence on 17
Tony Shaw
December. It is my goal to learn how to Sara, who focuses on skills-based Neil Taylor
drive a car,” Ryan says. “It has been pretty learning as part of the IHC Volunteer Donald Thompson ONZM
tiring. The hardest was the give-way Charlie Waigth
Programme, went along to Ryan's first
rules.” Maureen Wood
driving lesson in January to lend some
Ryan went online to learn the Road Code, support. “The instructor, Dave, drove IHC NATIONAL OFFICE
doing the practice tests repeatedly. Ryan to a quiet area before he let Ryan Level 15, 57 Willis Street,
doesn’t find handling a machine hard – take the wheel. He was so impressed Wellington 6011
with Ryan’s driving that instead of PO Box 4155, Wellington 6140
he learned to fly an aircraft in Morrinsville
Ph 04 472 2247, Fax 04 472 0429
as an air cadet – but it’s the theory that swapping and driving back into the
trips him up. Ryan has autism linked with city centre, Dave had Ryan drive back. EDITOR
ADHD (attention deficit hyperactivity At the end of the lesson he told Ryan Gina Rogers
that it was very rare that someone Ph 04 495 2771
disorder). Email editor@ihc.org.nz
would drive in the city centre on their
Sara and Ryan started the project first lesson.” COPYRIGHT
in February last year and met at the Community Moves is published
Greerton Library in Tauranga as often as Ryan has lived with Ron and Shirley by IHC New Zealand Incorporated.
Sitters since his mother died when he The content of Community Moves
twice a week, using the public computers
is copyright. No part of this
to go online to drive.govt.nz. “There are was 14. “He calls us his grandparents,” publication may be reproduced or
quizzes you can do at the end of each Ron says. “Shirley and I are very, very transmitted in any form or by any
segment. We worked through all those proud of the way Ryan has come means without the prior written
permission of the publisher.
and, once we had completed them, we through. Sara has been absolutely
ISSN 1171-8587
went over them again,” Sara says. outstanding.”
February 2020 | Community Moves 15Double your impact: Double your love Every dollar you donate today to help a child with an intellectual disability will be matched dollar for dollar. IHC Annual Appeal Please help us to make a difference to a child who is struggling. Donate now at ihc.org.nz/appeal
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