ISSUE 27 / WINTER 2021
Independence in young adults PRODUCT REVIEW: S TA ND ER S AND WALKERS
NDIS: Independent
IN
101
OCI
AT I ON
W H
CEREBRAL PA L SY
SS
IT
A
assessments Funding Sensory Equipment
MANAGING SUPPORT WORKERS MADE EASY!
Rental Equipment on demand for children to teenagers
Configured to suit you
Drive and attendant controls
Corpus and custom seating
Front, mid, and rear wheel drive
hub.permobil.com.au/rental
Choose from 1,000s of independent disability support workers. At Mable, we make it easy for you and your family to find support workers you truly connect with. No matter what type of hobbies, interests or passions your child has, there’ll be people who share them. People who are happy to share their expertise and experiences to help your child achieve their goals. Whoever you choose, they’ll have all the relevant police and reference checks. Plus, you can also see who has Working with Children Checks.
Sign up today to receive a $100 Voucher If you want real choice over your child’s NDIS support, there’s never been a better time to sign up. That’s because you’ll receive a $100 Voucher to put towards support booked through mable.com.au.
To redeem your $100 Voucher, scan the QR code or visit mable.com.au and enter the referral code ‘SKWINTER’ when you sign up. *Terms & Conditions: Maximum $100 redeemable. Discount Voucher may only be redeemed by clients who have not previously signed-up to Mable. The Discount Voucher can only be used towards payment for Independent Support Workers engaged via Mable and must be used within 30 days of signing up to the platform. Any unused value will expire 30 days after the date of sign up. The Discount Voucher is non-transferrable. The Discount Voucher may not be withdrawn as cash. For full terms and conditions relating to the Discount Voucher go to: https://mable.com.au/terms/voucher-offer/. This offer remains valid until 30/12/2021. Go to www.mable.com.au/terms-of-use/ for full terms and conditions relating to the Services and use of Mable.
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contents ISSUE 27 / WINTER 2021
5 We love
Independence in young adults
6
PRODUCT REVIEW: S TA ND ER S AND WALKERS
Welcome
CEREBRAL PALSY 101
NDIS: Independent
IN
10 1
OCI
AT I ON
8
W H
CEREBRAL PA L SY
SS
IT
A
assessments Funding Sensory Equipment
Managing support
MANAGING SUPPORT WORKERS MADE EASY!
workers made easy!
48
10 Cerebral palsy 101: What parents needs to know
14 Cerebral palsy under the microscope
18 Neuroplasticity and your child – making the most
68
23 Does the NDIS fund sensory equipment?
and devices
52 Encouraging independence in young adults
56 The importance
28
of core strength in children
Assessments – where are we now?
32 Have a warmer winter product feature
60 Entertainment is or everyone!
62 When to consider renting equipment
36
for your child’s
Complex
needs
communication needs and an introduction to AAC
38 AAC resources
40 Life with an AAC device
44
interventions
AAC: Getting it
20
happening – the
product feature
AAC accessories
NDIS Independent
of therapeutic
Strong at the core
48
importance of modelling
64 Making sport more accessible
66 Watches & Reads
67 Apps for speech and language development
68 Product review – standers and walkers
FUN STUFF
THE SOCK WITH FREEDOM; PERFECT FOR AFO WEARERS Finally, there is an alternative to socks and the restrictive feel that some children get from wearing them. Sockabu is paediatrician approved and will be a game changer to kids who aren’t fond of wearing socks. With a simple flip of the top of the sock, it allows toes to be free and wiggle! Sockabu is also perfect for AFO wearers as it allows full coverage of the leg but flip the sock so toes can be exposed! sockabu.com / FB @sockabu
L E A R N I N G T I M E , T H E F U N WA Y EasyRead Time Teacher was first born when Roger, the owner of this Australian
N AT U RO PAT H I C B L E N D E D F O O D S If your child has a naso-gastric-tube (NG-tube) or gastrostomy feeding tube (G-tube) or percutaneous endoscopic gastrostomy tube (PEG-tube), Bec 2 Nature is here to ramp up blended diets by giving
family run business, was frustrated that there was no simple way for him to help his young daughters learn how to read the time. After some trial and error, and a few cardboard cut-out demo models, Roger finally hit on the right design and the unique 3-step system was developed. See why, in a decade, EasyRead Time Teacher has helped thousands of parents and schools in Australia and around the world make it simple and easy for kids to read the time! easyreadtimeteacher.com / FB + INSTA @easyreadtimeteacher
your little ones only the best nutrition. These naturopathic blended meals are dietary requirements, using organic and
D E S I G N E D B Y PA R E N T S F O R PA R E N T S
seasonal food free from refined sugars,
The Burleigh Stroller Wagon has been designed
preservatives, artificial flavourings and
to be more than just a stroller but an important
colourings – only the good stuff to nourish
inclusion to your family’s outings to parks, theme
your growing champions! Blends are
parks, shopping, beaches, camping – the list goes
available for tube sizes ranging from 6-Fr to
on! With accessories to customise your stroller for
20Fr. Custom recipes are also available.
the needs of your family, we love this design for its
bec2nature.com.au/blended-meals
functionality and durability. We say yes to stress-
INSTA @bec2nature_gutnaturopath
free outings! burleighwagon.com.au
custom made to your child’s medical and
FB @bec2natureguthealth
I SSU E 27 | WI N T ER 2021 5
WELCOME
magazine
W h o a .. . it ’s J u l y a l r e a d y ? !
C
an you believe we are almost half way through the year – crazy hey! We’ve certainly fitted a lot into that time here at Source Kids – two magazine issues, a tonne of digital content, expos in Sydney and Melbourne – and we have loads more on the planner for the rest of the year. Our sister brand Source Mama has been super busy too, holding two fabulous and indulgent Gathering events in Brisbane in March and Melbourne in May. If you’re a mama raising a child with special needs make sure you head on over to @sourcemama on Facebook or Insta and follow along – it’s a great place to connect and feel uplifted and inspired by the SM tribe. In amongst the busyness we also put this fab winter magazine issue together and we love it, especially our gorgeous covergirl Alex – what a star! This issue we focus on cerebral palsy with a deep dive into what it is, diagnosis, stem cell research and intensive interventions. We also put the spotlight on AAC (or Augmentative and Alternative Communication) and look at complex communication needs, modelling, low and high-tech accessories and devices and we talk to two families about how they incorporate AAC into their lives. There is loads more inside – too much to list here so check out the contents page. Go pour yourself a glass of your favourite drop, sit back and enjoy the read.
SOURCE KIDS LIMITED PO Box 690, Noosaville QLD 4566 ABN: 36 614 552 171 sourcekids.com.au Send all letters and submissions to: editor@sourcekids.com.au WRITERS AND CONTRIBUTORS Nicole Davis, Rachel Williams, Emma Price, Kelly Wilton, Katherine Granich, Cerebral Palsy Alliance, Leap In!, Sabrina Fong, Cecilia Rossi, Naomi Sirianni, Menucha Cooper, Tracey Bode, Endeavour Foundation and Sophie Bilsborough. PARTNERSHIPS Carmen Smith Head of Partnerships & Strategy carmen@sourcekids.com.au 0472 548 245 ADVERTISING Matthew Rainsford Head of Sales & Business Development matthew@sourcekids.com.au 0499 017 354 Naomi Sirianni Business Development Manager naomi@sourcekids.com.au 0447 755 043 DIGITAL CONTENT EDITOR Nicole Davis nicole@sourcekids.com.au DIGITAL MARKETING Rebecca Pinese rebecca@sourcekids.com.au
Much love,
Emma x
GRAPHIC DESIGN Emma Henderson COVER PHOTOGRAPHY Sam Donovan @iam.sam.sam.iam PUBLISHER/CEO Emma Price
The Source Mama Gathering in Brisbane with guest speaker Karni Liddell.
6 SO U RCEKI DS .CO M . AU
Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.
FUN STUFF
LIFE WITH AN AUTISTIC SIBLING Understanding Oscar is a beautiful children’s book which explores what life can be like having an autistic sibling. It shows the joys and challenges, but most importantly how a little understanding can help a family thrive through celebrating difference. To purchase a copy of the book, head to: understandingoscar.com FB @UnderstandingOscar / INSTA @understandingoscar
DO YOU OR YOUR C H I L D WA N T T O T RY PA R A CYCLING? Lifecycle Cycling Club, a community group of Ride Nation, is an inclusive club which provides cycling opportunities for people living with a disability in Brisbane. They have trikes, handcycles and tandems for you
T H E G A M E T H AT H E L P S D E V E L O P L I T E R A C Y AND NUMERACY SKILLS With positive feedback from OTs and other professionals alike, we can see why Logico is a hit! Logico encourages children’s natural curiosity to engage in discovery and independent learning tasks and is very motivating. The self-checking gives children a sense of success and a feeling of self-esteem. With the moveable buttons, LOGICO provides learning with eye and hand coordination
to try in a closed environment. There is no cost. Bring a smile, a helmet if you have one and some closed in shoes. To check out the other clubs around Australia or to register head to ridenation.com.au
and gives children the time needed to reflect, memorise and get ready for the next task. eutoys.com.au / FB + INSTA @logicoaustralia
F O R E V E RY DA Y S U P E R H E RO E S ! Jason Sotiris is a tradie who has transformed the way children now experience hospital. His inspiration came from his own daughter, when at just one-years old, was diagnosed with a rare cancer that only 1 in 80,000 children ever experience. Jason created this medical garment for children who are critically ill, with long term stays in hospital. Supertees are made from cotton and have been designed to allow easier bypass of IV drips and lines and are MRI friendly! supertee.com.au / FB @TheSuperteeCharity
I SSU E 27 | WI N T ER 2021 7
I N A S S O C I AT I O N W I T H mable.com.au
Managing support workers
made easy!
Before you engage with a support worker, familiarise yourself with the practicalities – admin, necessary tasks, and general ‘housekeeping’ – that will make your life easier (and ensure your family is making the most of those NDIS hours).
S
ince the inception of the NDIS in
work and to challenge yourself to do some
“There is a bit of planning involved in
2013, the range of disability support
deep thinking, understand what you want,
putting your supports in place,” says mum-
providers and different models of
and actively look for a support worker with the
of-four Nikki Towill, who uses two-sided
how support can be provided has
same level of intent.”
online community Mable to find and manage
increased markedly. The NDIS exists to give
Engaging with a support worker or support
her team of independent support workers.
people with a disability, and their families,
team is an exciting time and it’s a process
The self-described “sandwich carer” looks
more choice and control over their support,
that can bring about such positive changes,
after supports for two of her children as well
to self-determine what will most benefit
not just to the life of your child but that of the
as those of her mother, and maintains three
them. One way they can do this is to find
whole family. Having the right information to
physical folders (one for each person) as well
support workers who are closely aligned with
hand can make the whole process of getting
as a Google Calendar to stay on track.
their goals.
started so much easier. You may find there’s
However, Nikki says, “Once you sit down
some trial and error involved, or you may find
and figure out the plan, it’s worth it. And
So how do I get started?
the right person straight away – everyone’s
when I’ve got a support worker on board,
Firstly, you need to be in the right frame of
experience will differ. The previous article in
processing all of the documentation,
mind and think about this as setting yourself
our support worker series with Mable goes into
timesheets, and reporting that NDIS requires
and your family up for success - the more
more detail to help fast track you on your way
is easy.”
time and effort you put in up front, the more
to great support.
Choose a solution which helps you manage the paperwork side of things – or,
you should get out of it.
What’s the admin component like?
better yet, one that has automated the
with the right support workers as well as
You will adapt to the admin related tasks
process as much as possible.
navigating the processes and tools that will
gradually as you refine and hone your
support you as you manage your team, while
processes to manage your time and the
administer the above or knowing that your
making it as easy as possible for you.
paperwork trail effectively. Think about what
support worker provider is taking care of the
works best in your own family situation, the
lion’s share will help ease the load and give
be overwhelming,” says Pieta Manning, State
way you like to work (i.e digitally or on paper),
you peace of mind that everything is in order.
Manager for Victoria at Mable (mable.com.
and keep in mind the end goal of what will best
au). “You need to be ready to do a little more
help you help your child reach their goals.
This starts with finding and connecting
“Getting started with support workers can
8 SO U RCEKI DS .CO M . AU
Having a set of admin processes set up to
If you are engaging with a support worker independently, either as a contractor or an
ENGAGING A SUPPORT WORKER
Some of the things you might need to consider when engaging and managing your support team are as follows: hecks on support worker C documentation (see below) Insurances Service agreements Timesheets and invoicing Shift notes and documentation Organisation and servicing of billing and payments Record-keeping for NDIS purposes
give you an idea of what you can expect to
for renewal, Mable will remind them. This is
pay (ndis.gov.au/providers/price-guides-
done before it expires, so they can continue
and-pricing).
to provide support.”
On the Mable website, each independent
“It’s also important to consider insurance.
worker has the ability to add ‘indicative
Mable arranges a suite of insurances for
rates’ to their profile which might make
independent support workers offering
your decision-making process a bit easier.
their services through the website,” Pieta
Indicative rates are just that – indicative.
continues.
They might take into account a worker’s
Keeping track of services is important
experience, qualifications, other skills (such
in monitoring their effectiveness and
as languages), ratings and reviews from their
addressing any issues that might arise.
other clients and the services they offer. “Look at the services a support worker
Mable provides both families and support workers an easy view of all timesheets
provides, read their profile, take note of the
submitted with clear details around times
hourly rate they charge and whether they
and rates.
have the training and qualifications to assess
Each timesheet also includes the option
their rate,” says Pieta. “Remember, the goal
to add a shift note, which is a good way to
employee, you may also need to consider
is to form a long-term relationship which
track how supports are going and how they
obtaining and keeping on file up to date
is based on quality support, so you need to
are working towards the agreed goals and
copies of documents related to your support
value your support workers.”
these can be downloaded to add to your NDIS review documents
worker’s qualifications and clearances. For example, if your support worker provides
What if there’s a problem?
you with details of their National Police
It’s easier to nip problems in the bud if
What else do I need to know?
Clearance or Working With Children / Working
you’re clear and upfront about what you
An important point that Pieta and Nikki agree
With Vulnerable People Check, it is your
expect from your support worker. “Look at it
on is the need to find allies – other parents
responsibility to ensure that the clearance
as a professional relationship,” says Pieta.
who have gone through the same thing,
is still current.
“It’s reasonable for both parties to have
service providers who want to make things
expectations.”
easier for you, and professionals and support
Mable is a website which allows you to find and connect with independent support
This is where it’s important to have an
workers whose values are aligned with yours.
workers in your local area. When you sign
agreement setting out all expectations. Your
up to Mable, you’ll be assigned a dedicated
agreement with them should state what you
people who want to share their skills and
support specialist who is there to guide you
will and won’t accept, and it’s okay to say
knowledge – an essential, independent
through the process.
no when there are non-negotiables in place.
workforce that we’re only just learning to tap
When an issue does arise it’s important to
into,” Pieta says.
“They’ll be able to help you refine your job post, give you tips on searching for support
have direct conversations so all parties know
workers, work with you to create a short list
where they stand.
of people to meet, and get the most out of
“In our community is an amazing pool of
“I’ve been fortunate to find support workers in my community and have brought
“Families who use Mable can have the
them to the Mable website,” Nikki explains.
the features Mable offers,” Pieta says. This
confidence that their support workers have
“One of our support workers is the daughter
targeted help will set you on the path to
the correct checks and insurances, and
of my children’s art teacher. A previous
independently and confidently handling your
that these are maintained. For example, if a
worker was a neighbour who was studying
supports.
support worker’s Police Check is coming up
to be a teacher and had time outside of her uni commitments – she was with us for four
How do I know what to pay my support worker? As a person seeking reliable, quality support, you probably have a rough idea about the type of support you need, who might be a good fit for you, and your budget or funding package. If you’re agency managed or plan managed, you’ll need to be aware of the NDIS price guide which sets an upper limit for how much you can pay per hour, depending on the support you’re seeking. NDIS website publishes an updated price guide that will
years, until she graduated and got a full-time
Documents you may keep on file could include: ational Police Check N Working with Children Check Two references (professional or community) Professional and personal indemnity insurance And up-to-date qualifications if you’re looking for more complex supports (like assisting with tube feeding or assisting with mobility/hoist.)
teaching job.” “You have to take the leap, and go with your gut,” Nikki says. “You’ll know, and your child will know, if a support worker is the right person to fit your needs.”
By Katherine Granich For real choice over NDIS support and easy management of your support team, head to mable.com.au and sign up today. I SSU E 27 | WI N T ER 2021 9
I N A S S O C I AT I O N W I T H
Cerebral palsy 101:
What parents need to know
Every 20 hours an Australian child is born with cerebral palsy
10 SO U RCEKI DS .CO M . AU
I
f your child is diagnosed with cerebral palsy or a diagnosis looks likely, it’s important for you to know that although the condition is lifelong, there are many therapies and interventions to look into to manage the symptoms and help your child develop. There are approximately 34,000 people living with cerebral palsy in Australia and everyone will have their own experience of how the diagnosis affects them. There are some basic things to know, however, about a CP diagnosis and with the help of Cerebral Palsy Alliance we’ve put together an overview of the condition:
CEREBRAL PALSY
What is cerebral palsy? Cerebral palsy is an umbrella term for a broad group of movement disorders that affect movement and posture due to damage to the developing brain. While it is a life-long physical disability, the way it presents in your child can change over time. There is no single cause of cerebral palsy and for most babies the exact cause may never be known. The brain injury leading to cerebral palsy occurs either during pregnancy or before 1 month of age. After 1 month of age, stroke is the most common cause in babies who acquire cerebral palsy. If your child has a stroke, it may occur spontaneously or arise from surgical or heart complications.
How may cerebral palsy affect my child? Each person with cerebral palsy is unique. While one child might have weakness in one hand and find tasks like writing or tying shoelaces challenging, others may have difficulty walking or with other gross motor skills. Some people find one side of the body is affected much more than the other, and some find their legs are much more affected than their arms. You may find that your child is only very mildly affected on one side while some children may have little or no control over their movements or speech and need assistance day and night. People with severe cerebral palsy may also have difficulties with swallowing, breathing and eating.
What to watch out for Not all signs of cerebral palsy are visible at birth; you may notice that some symptoms become more apparent as your child develops, or perhaps they may start missing some developmental milestones. Always talk to your GP, paediatrician or other primary care provider if you have any concerns.
Types of cerebral palsy QUADRIPLEGIA
Other classifications:
All four limbs
SPASTIC CEREBRAL PALSY
(arms and legs)
Spastic cerebral palsy is the most
are affected. The
common type of cerebral palsy.
muscles of the trunk,
The muscles of people with spastic
face and mouth are
cerebral palsy feel stiff and their
often also affected.
movements may look stiff and jerky. Spasticity is a form of hypertonia,
DIPLEGIA
or increased muscle tone. This
(A form of bilateral
results in stiff muscles which can
cerebral palsy)
make movement difficult or even
Both legs are
impossible.
affected. The arms may be affected to a lesser extent.
DYSKINETIC CEREBRAL PALSY People with dyskinetic cerebral
HEMIPLEGIA
palsy have variable movement that is
(A form of unilateral
involuntary (outside of their control).
cerebral palsy) One
These involuntary movements
side of the body (one
are especially noticeable when a
arm and one leg on
person attempts to move. Dyskinetic
the same side) is
movements often co-occur
affected.
alongside spasticity. Dyskinetic movements can be: Twisting and repetitive movements – known as dystonia * Slow, ‘stormy’
Babies Babies with cerebral palsy might: • Feel floppy when picked up • Not be able to hold their head up • Have muscles that feel stiff • B e slow to develop developmental milestones • Have feeding or swallowing difficulties • Prefer to use one side of their body • Not make many sounds • Not take much notice of you.
movements – known as athetosis * Dance-like irregular, unpredictable movements – known as chorea.
ATAXIC CEREBRAL PALSY This is the least common form of CP. Ataxia means ‘without order’ or ‘incoordination’. Ataxic movements are characterised by clumsiness, imprecision, or instability. Movements are not smooth and may appear
Children Physical development can be delayed, with children: • Not walking by 12–18 months • Not saying words or making simple sentences by 24 months • Having speech that is hard to understand • Having trouble eating or drinking certain types of foods
disorganised or jerky. The incoordination seen with ataxia occurs when a person attempts to perform voluntary movements such as walking or picking up objects. A person can also have a mix of the above types of cerebral palsy.
I SSU E 27 | WI N T ER 2021 11
CEREBRAL PALSY
Early Intervention and your child Early intervention is essential to improving outcomes for young
The path to diagnosis Cerebral palsy is a complex disability, and you may not receive a diagnosis immediately. Doctors may suspect cerebral palsy if your baby has slow or delayed motor development, has tight or floppy muscle tone, or displays unusual postures. The time varies when parents are given an official diagnosis. Very premature babies are usually watched carefully and may have an early MRI scan (magnetic resonance imaging). However, most children with cerebral palsy are not born prematurely. Most are born at full term and it is not until they do not meet the usual infant milestones that any form of disability is considered. A MRI might show that your child has an injury to the brain, but at this early stage it is often too soon to predict the impact. Your child may undergo a General Movements Assessment which can be conducted from birth until 5 months of age. It is a strong predictor of cerebral palsy, particularly when certain changes to the brain are seen on an MRI. The non-invasive assessment takes around 3-5 minutes and is used to identify any absent or abnormal general movements your child may have. A General Movements Assessment cannot predict the severity of cerebral palsy, but it can suggest that a baby is ‘at risk of cerebral palsy’, and intervention can then start as early as possible. This period of initial diagnosis can be a frustrating and worrying time for you as a parent, but your child (and you!) will have a team of experts around them during this time. Ideally, children with cerebral palsy, or those identified ‘at risk of cerebral palsy’ will be cared for by a multidisciplinary team that could include:
children and babies. Babies and children diagnosed with cerebral palsy or deemed to be at high risk of cerebral palsy, will be referred to a multidisciplinary team that includes occupational therapists, physiotherapists, speech pathologists, social workers, early intervention teachers and psychologists. Depending on your
• A GP •S pecialists such as a paediatrician, a neurologist, a surgeon or others •A n occupational therapist who can help your child with self-care tasks such as dressing or eating independently, and assist with developing play and fine motor skills •A physiotherapist to help with skills such as crawling and walking, and can also assist with issues like poor balance and muscle weakness •A speech pathologist who helps with feeding, language development and can treat speech problems •A child psychologist, who can monitor overall development and manage behavioural or emotional problems •A n audiologist, who can assess and advise on your child’s hearing •A special education teacher, who can help deliver an early intervention program and support your child in preschool and school. The multidisciplinary team will talk about your child’s strengths and weaknesses and will work with you to develop a plan for support going forward. This is likely to include: • Working out who is your first point of contact • Setting up a plan for regular assessments to check on progress •S ome early intervention services help with parent coaching.
child’s individual needs, any member of this therapy team may be involved with supporting you and your child. Brain development continues after birth and is driven by motor cortex activity. This means the first two years of your baby’s life are critical for cognitive and motor development, as their brain is undergoing constant spontaneous changes. This ability for the brain to change itself is called neuroplasticity and babies and children who receive cerebral palsy-specific early intervention will benefit from vital learning opportunities during this critical window.
Information provided by Cerebral Palsy Alliance. CPA helps babies, children, teenagers and adults living with cerebral palsy and similar conditions lead the most comfortable, independent and inclusive lives possible. To find out more about their services visit cerebralpalsy.org.au
I SSU E 27 | WI N T ER 2021 13
Cerebral palsy under the microscope What does the future hold for stem cell research and what could this mean for people living with CP?
S
motor function improvements than seen during pregnancy. I moved from the lab tem cell treatments have been from rehabilitation alone. to the Cerebral Palsy Alliance Research used in cerebral palsy research “Though small, it’s important to for the last 15 years. Experts now Institute in 2018, after completing my understand that these changes may create PhD. Here, I use all the information say more research trials are on big improvements in the quality of life I learnt in the lab to help design new the horizon, with the hope that they will for someone living with cerebral palsy. human research.” progress new treatment options for those “We are now working to design a Dr Paton is following in the footsteps of who need them the most. researchers who have been working in the large human trial to treat children with As a Research Fellow with the cerebral palsy with donor umbilical field for decades, and she can see there Cerebral Palsy Alliance Research cord blood. is potential for their work to soon start Institute, Dr Madison Paton is excited While the timeline for this trial is still helping those who need it most. about a future where people living with unknown, once established, the Cerebral She says there are many research cerebral palsy may be offered the option Palsy Alliance Research Institute of stem cell treatments. And fast-forwarding this for some “So far, the most well researched hopes to recruit people from many sites around Australia. via the conduct of essential stem cell treatment for cerebral “We are also interested in research, is a crucial next palsy is umbilical cord blood. targeting early brain injury, like step that Dr Paton and her stroke, using neural stem cells to colleagues are determined help regenerate the brain. Neural stem projects currently underway into the to achieve. cells are a unique cell type that may offer many different types of stem cells, with Dr Paton has been a researcher in a cure in the future, so more research is each project working in a slightly the field of stem cells and regenerative certainly warranted. Alongside this work, different way. medicine for more than eight years. we continue to conduct critical reviews “We currently work on projects to “My early work began in the lab, being of cerebral palsy literature, as well as progress both treatments and cures for hands-on with cell therapies, and testing creating surveys and communication cerebral palsy,” she explains. new treatment strategies to reduce brain pieces that help support all our efforts.” “So far, the most well researched injury that may lead to cerebral palsy,” Dr Paton says it’s a privilege to work in stem cell treatment for cerebral palsy is Dr Paton explains. her area of expertise. umbilical cord blood. Research to date “I was involved in some incredibly “I am so lucky to work in the field of has indicated it is safe, and when provided interesting projects, where I was looking stem cells and cerebral palsy. I initially in conjunction with rehabilitation for cell therapies to help treat birth started in research because I knew it therapies, can offer a small increase in asphyxia, preterm birth, and infection
14 SO U RCEKI DS .CO M . AU
CEREBRAL PALSY
would give me the chance to help answer real-world problems, and work on cutting-edge medical science. Plus, stem cells are so fascinating! “Another big inspiration for my work, are the families behind my research. Early in my career, I would often meet with families who helped support us, while also raising vital research funds. These people had close and personal experience with disability, and it was their legacy to help uncover the next best treatment options for cerebral palsy. This is, and continues to be, my inspiration for being a scientist and researcher. “My long-term goal is to enable access to evidence-based stem cell and regenerative medicines for those who need them. I hope that one day, this might mean there will be an entire suite of highly effective stem cell and regenerative treatment options for cerebral palsy. “While stem cell therapies for other conditions have been in research for a long time, they are not yet approved for use in cerebral palsy. In fact, very few cell therapies are currently approved for use in Australia at all. Those that have been, are generally used for blood cancers. However, every step we take to invest more time and resources into stem cell research for cerebral palsy, inches us closer to the day where we can make these treatments available. I am hopeful and excited for this future.”
Leon's story For Leon Szonyi, stem cell therapy is an unknown quantity, but one that his family would be receptive to trying.
independently before he starts school at six. The family utilises the services of the Cerebral Palsy Alliance weekly – he’s had
Leon was diagnosed with cerebral palsy
10 weeks of private physiotherapy and is
when he was 9 months old and has a 12-18
currently enrolled in a weekly three-hour
month developmental delay.
Conductive Education program, to prepare
The four-year-old, from Chatswood in New South Wales, has coped with major health issues since he was around six months old. His dad Adrian recalls the horrific moment he and wife Hannah were told that Leon had
him for school. “It’s great because he gets to socialise with other kids with disabilities and we have found that to be very motivating for Leon. “He always watches the other kids at his
Hydrocephalus and needed emergency
group therapy sessions and is very friendly
brain surgery.
with them. I have found this to be the most
“He has had brain surgery six times
valuable therapy session we have done for
to insert shunts, replace shunts, cleaning
Leon to date. He always seems well-behaved
and finally an ETV, which is an incision in
during the sessions, he tells us how much fun
the brain to allow the fluid to flow out into
he has and he really looks forward to it which
his body,” Adrian explains.
is a huge help for his development.
“As a result, he has hemiparesis which
“Our physio, Erlyn, did a great job of using
means he has limited mobility on his left side.
different toys to keep the sessions engaging
There is no treatment for his brain damage
for Leon and she really took time to listen to
other than therapy and early intervention will
what he wanted to do and knew how to push
hopefully help strengthen his muscles and he
him to do tasks he found intimidating.
will learn how to use his left side more.”
By Rachel Williams
goal is to have Leon walking and toileting
Leon can walk with a frame but the
“He’s come a long way with his walking and speech and we would love to see him walk to school without a frame and maybe even play
For more information about the current stem cell landscape, you can read Fifteen years of human research using stem cells for cerebral palsy: A review of the research landscape published here onlinelibrary.wiley.com/ doi/10.1111/jpc.15329
sports with the other kids.”
To stay updated on research and interventions to support better outcomes for babies and children with CP visit cerebralpalsy.org.au
impact stem cells would have on Leon
Adrian says he’s open to the use of stem cells for Leon into the future. “I haven’t really done much research into this but if it was recommended from our doctors or therapists for Leon and his development then I’m sure we would go ahead with it. “I can’t really say personally what as I don’t really know myself. But if it was recommended and available we would do it.”
I SSU E 27 | WI N T ER 2021 15
I N A S S O C I AT I O N W I T H
does the ndis
Fund sensory equipment? We hear this question a lot in the Source Kids community! The team at Leap in! gives us some insight and tips.
L
et’s explore the types of sensory
evidence that the support is likely to achieve
How to purchase sensory items
equipment the NDIS may fund, when
the desired outcome such as through formal
The process for purchasing sensory items
an assessment may be required and
or peer-reviewed research. The NDIS will not
depends on how you have chosen to manage
how to buy sensory items online.
fund a therapeutic support where research
your NDIS Plan.
indicates it may not be beneficial or may
If you are Agency managed, you can only
Types of sensory equipment
be harmful such as weighted blankets for
purchase from NDIS registered providers and
Sensory equipment is a broad term that
children under the age of 6.
the NDIS will pay your provider directly.
can include just about any item that can help
Demonstrating an item is effective for
If you self-manage, you can purchase the
a person to develop life skills or motor skills
the participant may require an individual
item from the provider of your choice and
and enrich the five senses: sight, sound,
trial, accompanied by a written report from a
claim the payment from the NDIS.
smell, touch and taste.
therapist.
If you are plan managed, you can purchase
It can include everyday items such
If the purchase meets the above criteria,
as puzzles, specially designed toys or
and costs less than $1500, you may be able
and your plan manager will pay your provider
games, tools that support regulation or
to purchase low cost sensory equipment with
after receiving an invoice.
improve focus and resources that build
the Assistive Technology or Consumables
functional skills.
budgets in an NDIS Plan.
Sensory equipment and the NDIS
obtain a quote and forward it to the NDIS for
Guidelines for when the NDIS will fund
approval prior to purchase.
For items over $1500, you’ll need to
the item from the provider of your choice
T I P S ! P U R C H A S I N G S E N S O RY EQUIPMENT ONLINE
• Ask for recommendations from your
sensory equipment can be a little confusing but it helps to know the types of things the
High risk sensory equipment
family or friends or check reviews
NDIS looks at when deciding if supports
The NDIS classifies several items as “high
prior to purchasing from a new
are appropriate.
risk”. High risk items are items that may
provider, especially if they are online
cause harm if they are not the correct
• If you are Agency managed, check
be related to the participant’s disability and
or ‘best fit’. This means they cannot be
the provider is NDIS registered –
considered “reasonable and necessary”.
purchased using NDIS funds without prior
some providers are only registered
There also needs to be evidence that
approval even when they cost less than
shows the item:
$1500.
As with any NDIS funded support, it must
• Is value for money
High risk items require an occupational
in some states • If you are Agency managed or plan managed, you may need to
• Is likely to be effective and beneficial
therapy risk assessment or prescription be
complete a service agreement prior
• Provides better support than other options
completed and forwarded to the NDIS with
to purchase (some providers have
more commonly available.
recommendations of why the item is suitable
standard service agreements on
and how it will help you achieve your goals or
Value for money
needs. If the item is approved, the funds may
The NDIS will also take into account whether
be allocated as a stated item in your Assistive
the item is value for money. Sensory items
Technology budget (meaning it can only
such as swings, trampolines and splash
be used for this item) or approval given for
pools may be available in the community and
you to use your Core > Consumables funds,
therefore may be deemed not good value for
depending on the cost.
money when it comes to NDIS funding.
HIGH RISK ITEMS INCLUDE: • Swings
Effective and beneficial
• Weighted blankets
For therapeutic supports, there must be
• Body socks
their website) • Check the return and refund policy prior to purchase.
Leap in! can help! If you have more questions please call 1300 05 78 78, email the team at crew@leapin.com.au or sign up to Leap in! plan management today.
Neuroplasticity & your child
Making the most of therapeutic interventions Put simply, neuroplasticity is the brain’s ability to change – to rewire, relearn and strengthen important connections.
W
hen the brain is injured or grows abnormally, neurons are damaged, altered or lost, causing disability such as cerebral palsy and other similar conditions. The good news is that the brain will attempt to create new pathways around an injury, by allowing a healthy area of the brain to take over or relearning how to do things by strengthening an existing healthy connection. While you’re never too old to learn, the first five years of life are critical for neurological development. During this time, the brain is developing at rapid speed making it the ideal time to harness neuroplasticity. In the case of brain injury and neurological disability, the more specific the skill is that a person practises, the more likely they are to recover. To maximise the brain’s ability to adapt or rewire itself, research shows that getting access to intervention as early as possible will give a child the best chance of learning, regardless of the condition or diagnosis. Interventions that have proven to provide positive outcomes include the following principles of neuroplasticity:
Use it or lose it Children who do not regularly use and practise a skill can lose these skills and the brain function dedicated to these skills. Use it and improve it - Training or specific practise will enhance a function. Repetition - Sufficient repetition is required to induce plasticity, refinement of the skill and memory for how to perform the skill. Specificity - Practise of each skill must be very specific to induce plasticity. For example, when learning to walk, a child must specifically practise walking, not just general movement skills. Intensity - Practise of a skill must occur regularly to induce plasticity. The frequency of the practise is very important for infants, who tire easily. Motivation - When tasks are motivating for the child more plasticity occurs. Age - Plasticity occurs more readily in younger brains, as the younger brain is more open to possibilities. Time - Different forms of plasticity occur during different stages of learning. For example, different stages might be learning new knowledge about a task, refining execution, and making the skill automatic so a child can carry it out without even thinking. Interference - Plasticity can be for good or bad. For example, a bad habit is as hard
to unlearn as it is to build a new good habit. Transference - Practise of a skill should occur in multiple environments, so a child can learn to carry out the task without you being present or with competing demands.
Evidence-based therapies and interventions
Advancements in early intervention therapies and treatments are being developed all the time. The more we learn about how the brain works and its ability to change and build new neural pathways, the more targeted therapy can become. Choosing a provider that’s practicing the latest in research and proven interventions is a great way to be confident your NDIS plan is funding therapies that will deliver results.
Questions to ask a provider might include: Do they predominantly provide active early interventions? Research now shows that active early interventions deliver stronger and longer lasting neuroplasticity outcomes than passive “hands-on” early interventions. In fact, passive early interventions (e.g. stretching or massage) have been proven not to improve a child’s motor capacity. Passive early interventions also have a
Your child is born with 100 billion neurons in their brain. 18 SO U RCEKI DS .CO M . AU
CEREBRAL PALSY
negative effect on cognitive development long-term (Morgan et al 2016). So, you may want to ask specific questions about a provider’s interventions. For example: • Do they predominantly provide passive interventions, such as massage, stretching, and positioning? • Or do they provide active motor training, cognitive training, and attention training? Are they using evidence-based interventions? Not all interventions are created equal. Some interventions predict certain outcomes but lack real evidence. Others are backed by robust clinical research, which is tried, tested, and proven to produce positive outcomes. Before selecting a provider, ask about the different interventions they provide, and whether there is clinical research to support the promised outcomes. It is wise to confirm whether they offer specific named evidence-based treatments that address your child’s individual needs or do they offer the same therapy to all children? For example, treadmill training for children with cerebral palsy is supported by strong evidence, as is the Triple P Positive Parenting Program for children with behavioural challenges. It’s also important to note that interventions that do not have a recognised evidence base may not be funded by the National Disability Insurance Scheme (NDIS). Do they offer therapy at the right intensity to reach the outcomes that you desire for your child? Traditionally therapy is offered weekly, fortnightly, or even monthly. However, some interventions work better at higher intensities or in short, focused
bursts, for example in a 2-week intensive therapy day camp. Ask how often they will see you and your child, so you can understand whether they offer the same frequency of appointments for all conditions and treatments, or if they vary treatment based on what your child needs.
Intensive interventions
After the early intervention years – specifically between the ages 6 -12 years – children fine tune and perfect their fine and gross motor skills. This is a key time to work on strengthening and improving skills obtained in early childhood. Research has shown that intensive therapy accelerates improvements in fine and gross motor skills in a short time period resulting in long lasting results. Three intensive group programs offered by CPA for pre-school and school aged children who experience challenges with fine and gross motor function are: HABITILE, Mighty Kids, Treasure Island CIMT. Each program uses playful and engaging methods that will motivate your child to deliver significant improvement, quickly. HABIT-ILE With global recognition, HABIT-ILE (Hand-Arm Bilateral Intensive Therapy – including the Lower Extremity) is a breakthrough therapy for children who experience challenges with hand and gross motor function. In 66 hours of 1:1 therapy, over 9 fun-filled days, children build on their existing skills to perform everyday tasks and activities using both hands together whilst developing overall body awareness and control at the same time. Treasure Island CIMT Treasure Island CIMT is an intensive 9 day program (45 hours 1:1 therapy)
for children with hemiplegia or monoplegia. CIMT, or Constraint Induced Movement Therapy leverages the latest research around neuroplasticity of the brain and is delivered in a fun and play-based approach, using pirate themed activities and games that are designed to engage and strengthen a child’s affected arm. MIGHTY Kids Based on the same motor learning principles as HABIT-ILE this program enables children to build on their existing hand and gross motor skills. The 40-hour program uses goal directed training to improve outcomes. Mighty Kids offers 35 hours of 1:1 therapy in a group setting over a five-day period. It also offers 3 hours of 1:1 pre-assessment, goal setting, post-assessment meetings and outcome review. Plus, 2 hours of follow-up session post program to consolidate skills gained into a natural environment.
The above information is an excerpt from ‘Early Childhood Intervention – Your guide to choosing the right early childhood intervention (ECI) for your child’ from Cerebral Palsy Alliance. You can download the guide here cerebralpalsy.org.au/services/ all-programs-and-services/ eci/. To find out more about early intervention, programs and other services offered by Cerebral Palsy Alliance go to cerebralpalsy.org.au/ intensive-therapy/
Let’s put them to work and I SSU E 27 | WI N T ER 2021 19
WOBBLE DECK BOARDS – WOBBLE T H E DA Y A WA Y The Wobble Deck is a great product for children who are learning to stand or are standing but need strength
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AIR CUSHION – BALANCE ON AIR! A balance disc is great for improving balance and for strength exercises. Users can also build core strength using one or two cushions for push ups, squats and lunges. RRP $22.50 hartsport.com.au
SEE-SAW – SPIN, BOUNCE AND HOLD ON TIGHT! The cyclone see-saw is a great one for kids with a more developed core, as it provides opportunities to strengthen and work on balance, whilst moving up, down and around and around! RRP $79 kmart.com.au
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Developing core strength is essential for our kids as the body’s core is the centre of control for so many other developmental skills. If we can work on their core strength, it will allow other areas to develop. Have some fun and work those muscles with these great products.
B I G F O OT S W I N G S F O R T H E A C RO B AT I C C H I L D Swing like Bigfoot! For kids who
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2 0 SO U RCEKI DS .CO M . AU
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Sleep safe. Sleep sound.
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5/06/19 3:10 PM
Dietetics
for children Dietetics is about supporting children’s healthy growth and development through good nutrition. A dietitian can help your child function at their best by ensuring their growing bodies and brains are supported with optimal nutrition. They work with you and your child to make healthy dietary choices and assisting you with issues around food and diet, such as allergies, weight management and gastrointestinal disorders. They can also support families with enteral feeding. Our dietitians are experienced in working with children who have complex needs, developmental delay or disability (including autism) or have been through trauma.
Nutritional advice — making healthy choices for your child’s needs and growth stage Food allergies and intolerances — understanding your needs and which foods to avoid
TELEHEALTH SESSIONS AVAILABLE Telehealth is an alternate and flexible way of receiving therapy services. Instead of driving to a clinic, your face-to-face virtual appointment is conducted using a phone, tablet or computer. Just some of the benefits include no wait times, no travel costs, and ensuring you receive continued support during difficult times.
Fussy eating and food aversions — developing a healthy relationship with food and improving dietary variety and nutritional intake Nutrient deficiencies — such as iron deficiency Weight management — support for children with weight concerns (over- or under-weight) Gastrointestinal disorders — improving gut symptoms related to food Nasogastric and PEG feeds — management and weaning Creating positive mealtime experiences
For more information call 1800 436 436 or visit growingearlyminds.org.au Servicing North West and Western Sydney, or anywhere in Australia via telehealth.
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NDIS Independent Assessments:
WHERE ARE WE NOW?
A pause on controversial changes to the country’s National Disability Insurance Scheme is not affecting current access and planning decisions, the NDIS has guaranteed.
B
ut what a future scheme looks like remains unknown at least until “later this year”. Major reforms to the 7-yearold scheme were announced late 2020, causing major concerns for a wide range of disability advocates. After a public outcry, the changes were last month put on hold by NDIS Minister Linda Reynolds, while further consultation takes place. And there is plenty of consultation to be had with many concerned they aren’t being listened to. The latest figures from the NDIS show that almost 450,000 participants receive supports from the NDIS, with an average annualised funding of $70,200 per person. More than 9,600 children receive initial supports in the Early Childhood Early Intervention (ECEI) gateway and almost 58,000 participants joined the scheme since June 30 last year. It's anticipated that 530,000 participants will use the scheme in coming years. An NDIS spokesperson said that access
2 8 SO U RCEKI DS .CO M . AU
to the scheme is based on functional impairment, not diagnosis or condition, with a decision around eligibility made within 21 days. “Functional assessments have always been part of the NDIS for both access and planning decisions – to help identify what supports a person may need to live the life they want, at that point in time,” the spokesperson said. “The current approach relies on individuals seeking their own assessments at their own expense, resulting in those who have the capacity to pay for and gather assessments receiving more funds in their plans, on average.” To address this issue, the National Disability Insurance Agency last year announced a raft of reforms to make the NDIS “fairer and easier for all participants”. The biggest shake-up came with the introduction of independent assessments. It’s a major issue for disability advocates who say the assessment won’t accurately capture the individual complexity or circumstances of each case. This is the lived experience of Nicole Rogerson, the CEO of Autism Awareness
Australia, whose son Jack, 25, has autism and a mild intellectual delay. Jack’s first experience with the NDIS started early this year. “Given we had just been through the process of getting into the NDIS, I was very aware of what kinds of supporting information the Agency needed to work out a plan and funding for Jack,” Nicole said. “When we were invited to be part of the pilot, I thought it was a great opportunity for my family to experience this all firsthand so I could honestly report back to the Agency as well as our Autism Awareness community.” To say things didn’t go well, would be an understatement. "It had been agreed that the initial assessment with Jack would be done, and then we would have the opportunity to speak separately with the assessor,” Nicole said. “Jack has autism as well as a mild intellectual disability, so it is hard for him to understand his disability in the context of how it affects his day-to-day life. As a family, we have built scaffolds around Jack in order for him to be successful.
“Currently, the functional capacity information used to develop participants’ baseline budgets comes in various forms, and can be of varying quality.”
NDIS
We spend zero time with Jack reminding him of all of the things he can’t do independently. We spend much more time cheering him on and celebrating what he can do. “For his own mental health, his father and I felt it was appropriate the assessor heard from us, without Jack being there. “We didn’t get that far, as I stopped the assessment half-way through. The assessment was confronting for Jack. Having a stranger in the house, who spent no time trying to get to know him, but launched straight into a series of questions asking him to rate his disability. Jack doesn’t like talking about his disability at the best of times… it was upsetting to watch.” The NDIA argues that free independent assessments will create a fairer, simpler and more flexible NDIS. “The process uses internationallyrecognised tools and qualified health professionals, and will be available no matter where a person lives or their individual circumstances,” the spokesperson said. “The independent assessment process provides consistent and reliable evidence that describes a person’s functional capacity, and the environment in which they live." One disability sector advocacy group recently posted to Facebook that results of independent assessments would “go into a computer and an algorithm will put you into one of 400 boxes” to determine plan funding. The NDIS spokesperson refuted that claim. “Independent assessments will help develop an overall personalised budget,” they said. “Following an independent assessment, participants will receive an indicative personalised draft budget. “Currently, the functional capacity information used to develop participants’ baseline budgets comes in various
forms, and can be of varying quality. In the absence of this information, Agency staff (planner or Local Area Coordinator) will complete one or two functional questionnaire tools to gather the required information. The result of the current, inconsistent approach has led to participants of similar disability and circumstances receiving vastly different baseline budgets and plans. “Participants will continue to meet with the planner, and decisions about personalised budgets will be made by a person at the NDIA. “During a planning meeting, changes will be able to be made, particularly for specific things like Assistive Technology and Supported Disability Accommodation funding.
generations to come. “As the NDIS evolves, the NDIA continues to consult with participants, their families and the wider disability sector to receive their feedback,” the spokesperson said. Nicole certainly hopes that is the case – because everyone does agree is that, despite not being perfect, the NDIS is vital and has literally changed lives for the better. “I have some sympathy for the Federal Government and the NDIS,” Nicole said. “We all know the scheme needs to be sustainable over time… it can’t be a blank cheque and getting a handle on costs and consistency of funding and plans across the country requires more work. “But the Government refusing to
“Pushing through with reforms that will lead to terrible outcomes for people with a disability, and the accompanying bad headlines, helps no one.” “This will mean participants will receive a more accurate plan, based on their support needs, with far greater flexibility in how they spend the plan to pursue their goals.” The spokesperson said the NDIA was committed to getting independent assessments right via feedback from the pilot, with results of the second independent assessment pilot due later this year. While more consultation takes place, the spokesperson said access and planning decisions continue to be made by NDIA delegates. “The pause on introducing changes to the NDIS does not impact on people who are currently applying for the scheme or need a plan review,” the spokesperson said. The spokesperson said that it was committed to ensuring the growth of the NDIS was sustainable and built to last for
work with the sector to solve these issues is a grave error. “Pushing through with reforms that will lead to terrible outcomes for people with a disability, and the accompanying bad headlines, helps no one. “The money going out isn’t being wasted. It is giving people with disability a quality of life, providing thousands of jobs in the sector and increasing the participation of people with a disability and their families back into the workforce. “I have seen first-hand how wonderful and important it is. It’s our job as a sector, to remind the Government it is our NDIS, paid for by Australia taxpayers and we want them to listen to us, work with us and ensure this scheme lives up to its goals and promise.” By Rachel Williams I SSU E 27 | WI N T ER 2021 2 9
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Have a warmer winter
Children who have temperature dysregulation need products to keep their bodies warm, without the danger of over-heating. Poor circulation, wearing AFOs, spasticity or muscle tone issues are factors in developing cold extremities. We’ve found some products that will keep your child toasty warm!
DEJAY BEANIE – SOFT P ROT E C T I O N F O R A C T I V E K I D S This funky beanie from our friends at Dejay doubles as a warmer for your child’s head as well as protecting from falls, including falls from seizures. Made with breathable protective foam 24/7 – this beanie will keep your child warm and protected at school, at the park and everywhere else! RRP $195 dejay.com.au
LONG SLEEVE TOP – FOR LAYERING Jam & Co’s long sleeve top is a great addition to add extra warmth via layering. With a fitted design, made from 90% bamboo, flat seams and tag-free, this
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SHOPPING
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I SSU E 27 | WI N T ER 2021 33
OUR MUST AT TEND DISABILIT Y EXPOS The Source Kids Disabilit y E xpo is coming back in 2021! Focused on children, youth and young adults — this expo brings together the latest products, ser vices and technology, along with some incredible speakers under one roof for two days. Come along and f ind, test and talk with providers.
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I SSU E 27 | WI N T ER 2021 35
COMPLEX COMMUNICATION NEEDS And an introduction to AAC
A guide to the world of Augmentative and Alternative Communication and what it means for your child
W
e communicate for many purposes; more than just to request or to label something. Among other things, we use communication to share news, protest, reject, express feelings and to share opinions. We need to be able to communicate effectively to be able to participate in the community, build and maintain relationships and to make choices. A person has Complex Communication Needs (CCN) if they are “unable to use speech to meet all of their communication requirements, given their age and culture”
(Porter & Kirkland, 1995). For example, a child with CCN might be able to use speech to tell that they saw a bird in the sky, by saying, “bird”, however they may not be able to use speech to tell their friend that on the weekend they went to the dinosaur museum. A school aged child with CCN might only use vocalisations like grunting instead of words to communicate. Parents who suspect that their child has CCN should seek advice from their medical professional. It is likely that they will then refer you to a speech pathologist for assessment and intervention.
Linking into support services may be beneficial to you and your child as it can make the journey feel less isolating. Support services like AGOSCI aim to enhance the participation of all of people with CCN, build the capacity of society and facilitate networking opportunities. AGOSCI is a national, not-for-profit, volunteer run organisation. Children with CCN will likely qualify for funding through the NDIS, however your medical professional/clinician should be able to provide further advice about this. The NDIS website also has information about access to the scheme.
AAC – The Lowdown What is AAC?
Examples of using AAC are:
AAC can help across settings, for
• A AC means Augmentative and
• Writing and then passing a note to
example, in school, at work, and
Alternative Communication • There are many forms of AAC • A AC includes all communication, in addition to speech, that help
another person. • Texting an emoji to your friend to convey your feelings. • Giving a courteous handwave out
socially with peers and family. People who use AAC may also use speech, whereas other people may use AAC all of the time.
people communicate
the window to say “thank you” to a
People with CCN use AAC to help
AAC includes every single
driver who has let you into their lane.
them to express their messages.
way that we share our thoughts and feelings without using words. We all use forms of AAC every day,
• P ointing to a “cheeseburger” picture
Some people may say some words
to tell the person at the register, “I’d
but use AAC to support their
like to order a cheeseburger”.
message or provide more detailed
• Pressing an icon on a device so that it speaks a message aloud.
information such as story retell or to create multi-word sentences.
usually without
Most people who use AAC use
AAC may be used with less familiar
even consciously
a combination of AAC types to
communication partners because the
communicate.
AAC Communicator may find this to be
labelling it as AAC.
an efficient way of communication.
3 6 SO U RCEKI DS .CO M . AU
AAC
AAC Systems AAC systems can be aided or unaided. Aided systems require the use of extra materials to communicate, whereas with unaided systems, you are using your own body to communicate. Unaided AAC systems include gestures, body language, facial expressions and some signing. An aided system uses other materials or devices. Examples of aided systems are: using braille, object symbols, a pen and paper for writing and paper-based systems (visuals). Paper- based systems can be fixed or dynamic display. The abovementioned systems are considered to be low-tech AAC. High-tech AAC refers to more complex devices that have digital or electronic components. With hightech, you press an icon and the device “speaks” the word aloud. Like with low-tech AAC, the systems can be fixed or dynamic display. A dedicated device means that the device is only used for communication purposes, whereas a non-dedicated device can be used for a variety of functions e.g. communication, taking photos, downloading and playing gaming applications.
As speech pathologists, we are regularly asked about AAC and when is the right time to introduce it. Often families will raise concerns and express reluctance regarding their child using AAC. The comments that we often hear are brought about by people’s beliefs and attitudes and life experiences. They may have also heard opinions from other people in their community or family.
We would like to bust these myths! • AAC will stop my child from talking: Research shows that many people demonstrate gains in their speech following AAC input. If a child is not talking or their speech is not developing, we need them to continue developing their language skills and have lots of success communicating. And we can do this with AAC! • I don’t think my child is able to use AAC: There
AAC Specialist Speech Pathologists – Our Role
are no prerequisites
Speech pathologists play an important role in supporting people with CCN to learn to communicate using AAC, especially in the early stages. Some of the things they can assist with include: 1. A ssess and trial systems for your child – we want to fit the device to your child, not the other way around. 2. We want to work on functional goals – ways to use the device meaningfully in real life and not just in activities within the therapy room. 3. We want to provide communication partner training – regular communication partners will likely need some advice to help your child to communicate with the device, especially in the early days. 4. P rovide intervention sessions with you and your child. 5. P rovide a holistic team approach – it’s important to work with your child’s support team, like the preschool/school, carers and the multidisciplinary team.
is always important to
to using AAC, you just need to give it a go! It presume competence (that is to believe that the individual has the skills and motivation to learn).
• We need to master
• Some speech is
paper-based AAC
enough: We need
before moving to a
more than just “some
speech generating
speech” for life. We just
device: We start with
don’t communicate our
what is the right AAC
needs and wants. We
system based on the
communicate about a
person’s needs. Many
lot more including giving
people with complex
information, asking
communication needs
questions, having a
will use a range of ways
social chat, participating
to communicate and may
in activities and learning.
have both a paper-based
• Is it too late to start
communication system
using AAC?: It’s never
and a speech generating
too late!
device. It will just depend on the situation they are in, the communication
So, what can you do
partners they are with
as a parent when
at the time or how they
supporting your child’s
are feeling, as to what
communication?
method they choose to
• Squash the myths!
use.
• F ind a speech
• Is my child too young
pathologist that is
to start using AAC?:
suitable for your
No, remember that communication for all of us starts at birth and there is no evidence to show that children need to be a certain age to
child’s needs. • Continue to interact and communicate with your child all the time! • Model/model/model speech and language
benefit from AAC. And as
and model using AAC
mentioned before, there
• A nd remember that one
are no prerequisites for
size doesn’t fit all.
using AAC. Sabrina Fong and Cecilia Rossi (AGOSCI NSW co-representatives)
AGOSCI is Australia’s AAC community! Find out more at: @AGOSCI Inc
@agosciinc
agoscisecretary.org.au
agosci.org.au
REFERENCES Porter, G. & Kirkland, J. (1995). Integrating Augmentative and Alternative Communication into Groups Programs: Utilising the Principles of Conductive Education. Melbourne, Australia: Spastic Society of Victoria. SCOPE Australia (2020), Communication-Aids-Myth-Busting-kids, scopeaust.org.au/wp-content/ uploads/2020/09/Communication-Aids-Myth-Busting-kids-1.pdf
I SSU E 27 | WI N T ER 2021 37
AAC
AAC RESOURCES
There are a number of great resources out there to help you help your child as they develop proficiency as an AAC user. Check out the following:
P R A A C T I C A L LY S P E A K I N G AAC – AUSTRALIA
S P E E C H PAT H O L O G Y A U S T R A L I A
A S S I S T I V E WA R E
Speech Pathology Australia (the
This is the home of the widely used app
We are avid followers of this Facebook
Association) is the national peak body
– Proloquo2Go. Not only do they have a
page as they share some amazing
for the speech pathology profession
wide range of information and resources
articles, infographics and links to other
in Australia. Their website includes a
for P2G users (plus their other products
resources to help parents, carers,
useful easy to read fact sheet on AAC
such as Proloquo4Text, simPODD and
teachers and kids!
as well as a number of useful resources
Pictello, there is a brilliant info hub of
around broader communication
articles tackling all aspects of AAC use
issues and speech therapy, speech
and issues parents and carers may
and language development.
encounter. assistiveware.com
@prAACticallyspeaking
BOARDMAKER
speechpathologyaustralia.org.au
A go to destination for an array of assistive communication needs. The
C L A S S RO O M C O M M U N I C AT I O N
every student to succeed at their own
A A C L A N G U A G E L A B F RO M L I B E R AT O R
pace, and on their unique path, with
The AAC Language Lab is a hub of
classrooom setting from Western
communication and literacy at the
incredible resources that can be used
Australia based Indigo Living. Many
heart of it all. On their website you
in teaching and training all aspects of
of the ideas on the fact sheets are
can shop their apps, software, AAC
AAC. The AAC Language Lab provides
workable in a home environment too.
speech tablets, digitised and low tech
materials for the Unity, Unity 2.0,
indigosolutions.org.au
AAC devices, symbol displays, therapy
LAMP Words for Life and WordPower
tools. And, at MyBoardmaker you can
vocabularies.
Boardmaker family of products allows
This is an awesome set of fact sheets regarding implementing AAC in a
activities, create your own custom
able to explore the different language
A S S I S T I V E WA R E ’ S F A M I LY MEMBERS AAC COMMUNITY
communication boards and download
stages for a wide variety of individuals
Get tips and ask questions in this
ready-made boards put together by
and download suitable interactive
Facebook group of parents and
others in the boardmaker community.
materials. Each type of material has been
carers of children using Proloquo2go.
goboardmaker.com
adapted for whether you are a teacher,
AssistiveWare’s Family
professional or parent.
Members AAC community
access Boardmaker 7 online, search
Within the AAC Language Lab you are
Many of the resources are free to
SOCIAL STORIES
use and download and there is also
Social stories are a great way of
a subscription-based service with
communicating important blocks of
additional materials. liberator.net.au
SPEAK UP AND BE SAFE F RO M A B U S E
information on a specific theme to a
Scope was supported by the
child who may struggle with receptive
AGOSCI
Victorian Government to produce
language. We love these pre-made stories covering a range of topics that
This site provides information about
for people with communication
are available for free from Okey Dokey
severe communication impairment for
difficulties, to assist individuals
childhood therapy. okeydokey.com.au
communication aid users, advocates,
to identify and report abuse. You
therapists, teachers, and rehabilitation
can find out more and download
engineers. It also provides access to a list
body safety boards and other
serve on augmentative and alternative
resources on their dedicated
communication topics. agosci.org.au
website. speakupandbesafe.com.au
3 8 SO U RCEKI DS .CO M . AU
a communication toolkit and resources
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I SSU E 27 | WI N T ER 2021 39
E C I V E D C A A N A LIFE WITH We spoke to two mums – our very own Naomi, mum to Archer, and Menucha, mum to Mendy about their child’s journey using AAC to communicate. Can you tell us a little bit about your child and their diagnosis and why they use assistive communication?
Archer
Our dear son is gorgeous Mendy who is 8 years old and has Angelman syndrome. He is super determined, cheeky and brings so much happiness and love to all those around him. He attends a specialist school 3 days a week and a Jewish mainstream school 2 days a week. Children with Angelman’s have significant communication difficulties. Archer, my youngest son is 9. He is active, vibrant, full of spunk and is completely non-verbal. Over many years of searching and researching, we now know Archer has Coffin-Siris Syndrome, and also presents with Partial Agenesis of the Corpus Callosum. Archer has always been non-verbal. He never had the pre-communication skills such as mouthing, rolling his tongue etc, plus he has hypotonia – speech just never came. We started using AT as a family very early on and we haven’t looked back.
Proloquo2Go (P2G) was next on the list and we have not looked back! It is user-friendly, it is mum and dad friendly, and importantly brother friendly! We all use it.
4 0 SO U RCEKI DS .CO M . AU
How long has your child been using AAC? When we realised Archer’s speech was non-existent, he would have been around 2-3 years of age. 2.5 years What device does your child use? Archer currently uses Proloquo2Go on his iPads. We have multiple devices to ensure he always has his ‘talker’ with him wherever he might be. His developmental school put a custom template on it, and then this mama worked her magic to design each page to include everything he could need! All of the objects, people, food, books, toys, DVD titles, places, music etc. near and dear to Archer’s heart – it’s all in there, photographed and labelled. Mendy uses PODD. Have they used any other form of AAC or did they go straight to the device they’re using now? We began with PECS but we soon needed more range so we tried to move onto sign language and PODD. Sign language had its barriers, and still does; Archer spatially isn’t aware of his body so it can be quite tricky with the intricate movements. PODD just didn’t work for us even after months of trialling. I’m sure it works for other families but not for ours. We also had a trial with the Novachat, that device is somewhere at the top of a cupboard!
AAC
Proloquo2Go (P2G) was next on the list and we have not looked back! It is user-friendly, it is mum and dad friendly, and importantly brother friendly! We all use it. Our son used PECS when he was in his Early Intervention program. We have used many different forms of the Boardmaker pics with different sheets designed for him. What has the learning curve been like for you and your family? Where there is a will there is a way! Archer’s receptive language is impressive to say the least. He gets his messaging across no matter what AAC is used just by using his smarts and by thinking outside the box. It’s been a challenge. In many other areas there are other ways of doing things such as crawling to get to what he wants etc, however with communication, it’s hard especially when he’s frustrated and upset. Did you have any breakthrough/aha! moments with use? Not yet with the PODD book but he has said ‘more Bubbles” and more a few times. He also says mama but not always in context. Oh, there have been many! When Archer started to use Proloquo2go to request his food, right through to now using the app efficiently in creating full sentences. Scrolling through my phone and the many videos I have of Archer using his device, the most delightful are the messages to our loved ones. Happy Father’s Day to grandparents, Happy Birthday to friends and so on. It is impactful for him (the pride exudes) and more importantly those he is messaging. How do you and your child use their device at home? We all use it. Modelling, talking through, requesting, this app is part of our everyday life. Honestly, we don’t that much as
Our son used PECS when he was in his Early Intervention program. We have used many different forms of the Boardmaker pics with different sheets designed for him.
Mendy its quite overwhelming. It’s more of us modelling at the moment. We find by the time we get to the correct page he has already lost interest and just wants to eat the book! Does your child use their device at school and in the community? Can you tell us a bit about that? Mendy is at a specialist school 3 days a week and they use PODD full time at school. The teachers are unbelievable the way they use the book and the speed at which they use it! At his mainstream school they use more individualised PODD/Boardmaker sheets as they find this works better for them. Yes. It is used from morning to night. It is our go to. I’m very protective over the iPad and with good reason. We lose that and we lose Archer’s voice. His school is proactive as are we, and when with family or friends or within the community it is very cool to see him communicate, even better to see them all light up knowing they CAN communicate with him.
Do you have any tips or tricks for parents regarding use and/or modelling? Don’t give up, work at it and find the right tool for you and your family; there are many options out there. You are all in it together, that’s the key to successful communication using AT. I am a firm believer in going with your gut feeling and being realistic about what you can do as family. It’s important and defiantly worthwhile to be open to hearing about a range of different options and trying them. Nothing is set in stone, you can always stop something or change something. What communication goals do you have for the future? For Archer to use keyboard and apps such as Proloquo2Go at all times. We use our voice at all times, why not him? The technology we have available nowadays is only going to become more innovative – I cannot wait to see what is on the horizon for my beautiful son to utilise. We are looking into Eye Gaze as the school have been trying it and have said that he is doing well. We will keep trying to find the best way for our awesome Mendy to communicate with us. I SSU E 27 | WI N T ER 2021 41
ADVERTORIAL
How do you get the right communication system?
Do you resonate with any of these questions? • How do I know which AAC device to choose? • I’ve seen a device but how do I get one? • What if we’re not up to communication yet; can a device help? • What if the touch screen is difficult to access? • What are the different apps and which one is best? • How do I get help to get started? • Can I get this funded?
Where to next?
To start we invite you to book a ’review” call to have a conversation with an experienced ZYTEQ Assistive Technology Consultant. Please book a time that suits you by heading to this link to watch Fiona’s account of their visit and to find out more or leap in to book a call.
When we are choosing a device for communication it is important to know that there is an evaluation process and there is help available to navigate the process. At Zyteq we help people with disabilities to communicate, connect and learn by providing individualised technology solutions with our guidance from evaluation to successful implementation. Our ZyTEQ READY program is the pathway we’ve created to guide you through the process of finding the right assistive technology for people who need more than the consumer devices offer. Fiona talks about the day she and Max visited Zyteq for their evaluation. What’s important is for Max to be able to access communication and to have a plan to help Max to express himself. They’ve trialed many things in the past and want to know what they should be doing. They left with a clear path and an action plan. Check out more in the link.
Or call our receptionist and they can book a time for you. Phone: 03 9696 2944 / Email: support@zyteq.com.au
zyteq.com.au
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I SSU E 27 | WI N T ER 2021 4 3
AAC: Getting it happening
THE IMPORTANCE OF MODELLING
day from birth. She goes on to compare this with an AAC user who is only exposed to their AAC system during therapy sessions and says: “a child who has a communication system (AAC) and receives speech/language therapy 2 times/week for 20-30 minutes will reach the same
When looking at how to assist a child’s communication it is important to acknowledge the value of all types of communication. Generally we all use multiple modes of communicating, which we call multimodal communication, so for an AAC user
We wouldn’t start by expecting a child to communicate using an AAC device by presenting a symbol display to a child to
amount of language exposure (in their AAC language) in 84 years”. The other consideration here is our
select something meaningful. We might do
expectations of neurotypical babies in a
this and think of it as exploration or playing
spoken language-rich environment. They
with words and sounds as a baby may do in
may not say a recognisable word until aged
the babbling phase and this can be useful.
12 or 18 months. After 2 years they may
What we want to do is create the ideal
have around 270 words and by 3 years,
environment which is a language-rich
around 900 words. Throughout this time
environment based on the child’s AAC
they are developing and learning and we
system. The way we do this is by modelling,
are consistently encouraging and guiding.
which is where you point to words on the AAC
The point to note here is the months and
in a wheelchair or when playing in the
tool while you speak during conversation and
years needed to provide the consistent
sandpit or in the pool, or for different
other interactions with your child throughout
input in the relevant mode as part of
communication purposes; for example
the day. Modelling is a key element and
everyday interactions. The modeling
talking to grandma who is in another town,
provides the receptive input needed for your
can be carried out on the user’s system
or to get urgent attention, and for varying
child to develop as an AAC user.
so they can see what the communication
we usually want to include a number of modes of communication to suit different locations and positions; for example in the classroom or in the car, in bed or
times of day or health, for example when feeling tired or unwell or when very active.
It is useful to think about a parallel scenario with a baby developing speech and
looks like. The key to AAC success cannot be
Our first thought may be to use a well-
language. Everyone around talks to them
held to one tool or one device on its own.
known tablet device as the AAC solution
and they are exposed to language almost
It needs to be embedded in the right
for a child. But is a tablet device on its own
constantly. We respond to their vocalisations
environment with support. Creating the
an AAC solution? As a high-tech device it
and gestures and help them to learn that
ideal environment, which is a language–
is certainly only one mode, and on its own
these are meaningful.
rich and based on the child’s AAC system
it is only a tool. We would usually want to
Data from Jane Korsten (Speech Language
have a low-tech communication book in
Pathologist) often cited, tells us: the average
place as well as a high-tech device. This
18-month-old has been exposed to 4,380
means the AAC user will have an option for
hours of oral language at a rate of 8 hours/
is the reason why the power of modelling cannot be underestimated.
By Tracey Bode, Zyteq.
in the sandpit or pool or in other activities where the device may be unsuitable.
So how do we get communication via AAC happening? We know that the environment and supports are key factors in introducing a device and developing skills in using it.
4 4 SO U RCEKI DS .CO M . AU
Zyteq help people with disabilities to communicate, connect and learn by providing individualised technology solutions with their guidance from evaluation to successful implementation. W: zyteq.com.au E: support@zyteq.com.au P: 03 9696 2944
AAC
fine – your child will discover words and functions by ‘playing’. We don’t discourage verbal children from babbling and repeating words over and over, let’s allow our non-
TIPS TO HELP YOU AT HOME!
verbal kids to do the same.
TIP
MODEL, MODEL, MODEL As our previous article explained
modelling speech with your child’s chosen device is key to helping them adopt usage themselves. To model effectively ensure that you have your child’s attention before you start and say words aloud as you use the device. Keep in mind that you don’t have to model every single word you say – this is not just practical, model the core words or the most important words in a sentence. For example, if you want to say, ‘we are going to school now’, model the words ‘go’ (don’t worry about the correct tense) and ‘store’. Also, try to model at a level just above that of your child so if they are at a one word sentence, use two words instead – i.e. brown
Whether your child is using a low-tech or high-tech device, your child’s speech therapist will always be your go-to regarding the best ways to help your child develop their AAC skills, but to help you feel a little more sure-footed when it’s just you, your child and their device, here are some tips to keep in mind.
key communication partner (i.e. you!) but
dog, instead of just dog.
everyone in the household can model and respond to your child when they use the device. Chat to siblings about how they
TIP
CREATE OPPORTUNITIES TO USE THE DEVICE TOGETHER
can respond, chat about the day and even
There are so many ways you can incorporate
integrate into games.
speech with your child’s device into your day here are just a few ideas:
TIP
RESPOND TO YOUR CHILD
Read a simple picture book: one of our
IMMEDIATELY WHEN THEY
Source Kids had lots of success with
USE THE DEVICE
modelling and reading the Spot the Dog
If your child doesn’t receive instant
books as they include lots of core words.
feedback when they are talking they will lose
Look at a family photo album together:
KEEP THE DEVICE AROUND
motivation; no one likes to be ignored – we all
Family photos are highly motivating for kids
AT ALL TIMES
want to be heard when we’re communicating.
and provide lots of opportunities to chat.
Make sure your child’s device is within arm’s
It’s important to acknowledge and encourage
Look at what people are wearing, where they
reach at all times. And keep it charged! Bring
all attempts to use the device, even when
are, ages etc.
it to the dinner table, have it next to them on
wrong words are used. Which brings us to…
Discuss daily routines: Take a little time out
TIP
to talk about what’s coming up in the week
the sofa, prop it on a chair in the bathroom! If your child can physically access their device easily you’re on the right track to actually
ALLOW THEM TO BABBLE
ahead, what you need to do tomorrow and
Your child may not use their AAC
spend five minutes chatting about the day.
device meaningfully to start with – buttons
Cook together: Following a recipe together
may get pushed in a random way, ‘wrong’
provides some great opportunities to model
GET EVERYONE INVOLVED
things may be pointed to and there may lots
simple instructions and core words. The
Your child will most likely have one
of repetition of certain words. This is totally
same goes for an art and craft project.
getting them to use it!
TIP
TIP
I SSU E 27 | WI N T ER 2021 4 5
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oi uc rK s p
AAC – accessories & devices We all have different ways we communicate. Whether it’s spoken language, using sign, symbols, or high or low tech devices. The aim is to find what best suits your child with where they are now and to help prepare for where they are headed. Have a chat with your speech therapist about what option will serve your child needs.
low-Tech P I C S E E PA L C O M M U N I C AT I O N S Y S T E M Picseepal is a lite-tech communication solution for all ages and abilities. Picseepal is lightweight, portable, customisable, splash proof, modular and easy to use! Complete with a strap and shoulder pad, the Picseepal can be comfortably carried by the user, so they ALWAYS have their individualised communication system with them, no
low-Tech
matter where they are! The visual starter pack, print screen shots from your hightech AAC....basically the Picseepal can
C O M M U N I C AT I O N B O A R D S
house any visual supports you choose!
A communication board displays photos, symbols, or illustrations to help
Picseepal and 1 box of Picseesnaps)
people with communication differences express themselves. There are many
picseepal.com
free downloadable communication boards that can be saved to phones, iPads or simply printed. Here is one from Aphasia – which includes Daily Activities, Conversation Phrases and Pain Scale. aphasia.com
High-Tech TELLUS 5 INTELLIGAZE The next generation Tellus 5 IntelliGaze is computer power to meet communication and mainstream software use and is integrated with AAC software. This highly functional communication system is designed for someone who wants to work on a powerful, eye gaze accessible tablet PC for all their AAC and computing needs. RRP POA. zyteq.com.au
4 8 SO U RCEKI DS .CO M . AU
Rain, hail or shine! RRP $149 (includes
AAC
low-Tech
P I C T U R E C O M M U N I C AT I O N SYMBOLS (PCS) The Picture Communication Symbols (PCS) were originally designed to create communication aids both quickly and inexpensively. PCS are used across all varieties of learning activities and lessons. Boardmaker is one of the most popular online programs to use with the PCS system. PCS have simple and clear drawings that are
low-Tech
easily recognised and are appropriate for all age levels. goboardmaker.com
THE GRIP LIFT F O R I PA D
The Big Button has a large active area with an extremely low-profile allowing communication without
Grips Lift is light for our
lifting your hand off the table!
kids who love their iPad!
The Big Button has two modes
Specially designed to not add
comprising of single message and
unnecessary weight and bulk
tap-to-talk mode. Single message
as the iPad is meant to be
you have one great sounding
held. Big Grips Lift offers one
message and Tap to Talk you can
of the best protection-to-
choose up to three messages.
weight ratios available. Check
Also included is a single overlay
out Big Grips Lift for iPad Air
to display pictures of your choice.
and iPad Pro as it works with
RRP $120 spectronics.com.au
the original and stable Big Grips Stand. Whether working at a desk, prepping meals or lounging on the bed, Big Grips
Accessories
BIG BUTTON
Stands are holding steady. RRP $90. spectronics.com.au
low-Tech ONE FOR THE TEACHERS This Full Apron frees your hands to prompt students or record responses. Washable and flexible, the Velcro-
Learning to
receptive apron also has a pocket to store
communicate
your activity pieces or PCS! Use your
with typing
adhesive backed PCS and place them on the apron for symbol support in your class. RRP $60 spectronics.com.au
THE CLEVY KEYBOARD The Clevy keyboard with its
High-Tech G R I D PA D 1 2 Grid Pad 12 is great for children with complex access and communication needs. The new Grid Pad from SmartBox is a dedicated device and has been designed in collaboration with AAC users. With a long 15-hour battery life, rugged design and multiple access options it ensures your child will always have their voice! RRP POA.
larger keys is great for children with physical disabilities, allowing the user to easily press one key at a time. With easily recognisable lower-case handwriting letters, the Clevy keyboard complements school writing lessons. The keyboard’s sturdy construction means that it can withstand hard knocks as well! RRP $200 spectronics.com.au
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I SSU E 27 | WI N T ER 2021 51
Encouraging independence
in young adults As children with disability develop into adulthood, we need to consider how to help them become more independent and have an appropriate level of autonomy and control over their lives.
The team at Endeavour Foundation is dedicated to informing and supporting carers and people with a disability through these pivotal life moments and they have provided us with these tips for working towards a more independent lifestyle for your loved one.
Support Seek to support, not control, what people do
We all do our best as parents and carers, often under challenging circumstances. But, sometimes when we care about someone’s well-being we want to control the situation in order to protect and nurture them. Releasing control of the situation can feel like the end result is out of our hands. However, it’s likely the more you are managing the situation, the less responsibility others will take on, and the more reliant they will become on you as their carer. Instead of seeking to manage every interaction and decision, begin to find ways that you can gradually switch to a mode of offering support instead. Sometimes the shift from “control” to 52 SO U RCEKI DS .CO M . AU
“support” can be as simple as some small tweaks to the language you use. Instead of telling someone what to do, ask him or her what they would like to do. Establish a trusted support network
A big part of promoting independence is to get others more involved in supporting and assisting your loved one. Family carers are often deeply dedicated to their caring role, and it can be difficult to take an intentional step back and involve other family members, friends or even paid support staff. Learn from each other and adapt
It’s good to be open to learning and developing yourself. It’s not just a one-way street. The more you, your loved one, and your support network can work together to adapt and understand each other, the quicker progress will be toward independence.
Confidence and control Start slowly with daily life decisions
Promoting independence requires patience. It’s about a series of small steps and 1% changes that add up to a more empowered lifestyle and more choice for the individual. The challenge is that many adults with disability have experienced strongly nurturing and highly protective environments. Independence and decisionmaking power may be foreign concepts, which means that if things happen too quickly, fear and anxiety can take over. The solution is to start slowly, by empowering the individual with daily life decisions. It can be simple things like how to wash the dishes, or what to cook for
INDEPENDENCE
and hobbies. This will get them excited to go along and accelerate the building of self-confidence.
Education Encourage your community to embrace diversity
dinner. As they build up decision-making confidence with everyday activities, then begin to transfer that confidence into new and more challenging situations. Allow choice about friends and lifestyle
Everyone deserves the opportunity to choose their own friends and decide what hobbies they would like to do on the weekend. Enabling this power of choice is an important way to support individual growth and development. Provide decision-making power
People with disability in Australia have a choice on where and how to access their support network and care, using their NDIS support package. This is a significant step towards increased independence across the board, meaning that carers and the support network of each individual are in a position to increase people’s ability and opportunities to be involved in decision-making about their own life. Get into community activities
Once this journey to independence begins to progress beyond decisions related to daily at-home rituals, you can integrate the process with community activities. For example, you may be able to encourage your loved one to catch the train to the grocery store and pick up the shopping. Initially they may need to support on these trips, but after a while they may be able to go independently. Join mainstream community groups
You could also begin to facilitate and encourage interactions with local community groups such as a local church or a sports club that runs regular events. Try to find community groups that closely relate to your loved one’s interests
Education plays an important role in increasing independence for adults with disabilities. This education is not, however, always targeted at the individual. Many people are misinformed, or uneducated, about the abilities that people with disability actually have. Give them a helping hand to understand, so they can act accordingly. It all helps towards an inclusive community. Living a healthy lifestyle
It’s common for adults with disability, especially intellectual disability, to have a fairly inactive lifestyle and unhealthy diet. When you are looking to promote independence, you need to be aware of the education required to make healthy lifestyle choices. Education alone won’t cut it though. You may need to help your loved one create daily habits that will contribute to a healthy and happy life while they are not with you. A great place to start is with a daily dose of light exercise and a healthy, balanced diet.
support from a network of friends, family and mentors. Encourage your loved one to build a learning and career plan. Something that maps out a pathway to achieve their goals and acquire the knowledge or qualifications they need to sustain meaningful employment. Start with daily living skills
The secret to promoting independence and making it sustainable isn’t about making one “big” change. It’s a series of smaller changes that combine to look like a bigger change from the outside. So, start developing skills with low-risk daily activities – the cooking, the washing and the ironing. Then when you’re both ready, move onto social and life skills – communication, relationships, shopping and participation in local community groups. These daily life skills will build confidence and prepare your loved one for the next step, which is developing employment skills – money handling, using technology and taking part in interviews. Use repetition by creating daily rituals and habits
Provide training to improve the required skills for independence
We are creatures of habit. Most of the thoughts we have and the activities we do every day are exactly the same. Breaking these habits, or creating new ones, can be hard because often we resist change. But you can use this to your advantage to help others develop skills and learn new things. Repetition is the key. If you do something enough times it will soon become second nature. Promoting independence for people with disability can be a hard and confronting journey because your instincts encourage you to protect and nurture. But if you can embrace the uncertainty and commit to supporting your loved one on this adventure, the end result will be a positive and life-changing one for all involved.
Increased independence often comes with the need for a new skill set. The key components required to help people improve their skills are access and support. People with disability must have access to the right learning opportunities – tailored to their interests and abilities – and
Endeavour Foundation is dedicated to informing and supporting carers and people with disability through these pivotal life moments. To find out how they can help, visit endeavour.com.au or call 1800 112 112.
Consider options for learning, employment or volunteering
Working – whether to learn, to make money, or to volunteer your time – can provide people with a sense of purpose. It’s an opportunity to contribute to society and develop improved self-confidence and interpersonal skills. Endeavour Foundation is the largest employer of people with a disability in Australia - to find out more visit their website endeavour.com.au
Training and skills
I SSU E 27 | WI N T ER 2021 53
INSPIRE, EMPOWER, UNITE
Mums raising children with special needs
We invite you to join the most exclusive, inclusive club - Source Mama. Unapologetically candid, uncut + heartbreakingly real, whilst uniting, elevating and fiercely empowering. Join the greatest pride of lionesses in our community that supports mums raising children with special needs.
Join the Source Mama community. @sourcemama sourcemama.com.au
SOURCE MAMA
A b il it y 8 A p p
EVERYTHING IN ONE PLACE • Manage your disability journey not just your NDIS Plan • You, your family, your team, collaborate! • Succession planning • Schedule appointments and activites • Care plans, task lists and chat sessions • Email invoices and receipts to the app • Single place for all your documents • Manage employees and contractors
NEW VERSION • In App payments • Single touch payroll • New accessiblility standards • New user interface
ability8.com.au info@ability8.com.au 5 4 SO U RCEKI DS .CO M . AU
Washable Pyjama For Bedwetters A place where different abilities are celebrated! We are an online supplier of therapy resources, toys and equipment for people with DIFFerent abilities.
Owned and operated by a Speech Pathologist and OT team with over 25 years combined experience.
A unique solution for children and adults
PJAMA BEDWETTING ALARM
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I SSU E 27 | WI N T ER 2021 5 5
The importance of core strength in J children A strong core is an important building block in your child’s development.
5 6 SO U RCEKI DS .CO M . AU
ust as a tree needs a strong trunk to be able to hold its branches up, and withstand elements in its environment, a child requires a strong core to participate in life’s daily activities efficiently! Essentially, core strength, or postural control, is both the anchor and launching pad for everything that we do – if a child does not have a strong core, this will affect
CORE STRENGTH
posture whilst standing and sitting without support. If a child has poor core strength, they will therefore have difficulty controlling fine motor skills, such as handwriting, and participating in gross motor activities like school sport. How do I know if my child has low core strength? At school, incorrect posture when writing means a child’s body is doing more work than required. This can often lead to fatigue and sometimes pain. A child with poor core strength usually: • Slouches when writing, and may use the chair to support all aspects of their body • Holds their head up with their nonwriting hand • L eans far into the table to gain support whilst sitting • Move around in their seat a lot • Fatigues easily and may require frequent rest breaks during writing and physical activities • D ifficulty on playground equipment such as slides, poles, see saws, and swings – needs to exert more effort than peers • Struggles to get up and down off the ground • Doesn’t like to participate in rough and tumble play How can I help improve my child’s core strength and postural control? Simple and fun activities that help build up your child’s core strength can easily be incorporated into their daily routine.
their head position – shoulder position – elbow position – wrist position – finger position. What is core strength? The body’s core refers to the muscles surrounding the abdomen, pelvis and back. It is the foundation for children to be able to assume and maintain an upright
Try to include these exercises at least 3 times a week: • W heelbarrow walking races (where the child ‘walks’ on their hand and adults hold their feet off the ground) to develop upper body strength – measure how far you can go! • Create an obstacle course by including unstable surfaces, e.g. pillows – this type of activity requires strength and will also help to increase your child’s endurance.
Time how fast they can go! • Play animal walks by pretending to be a variety of animals such as crabs, frogs, bears, worms or kangaroos! All of these use the child’s body weight as resistance. • S et up a mini ‘core strength circuit’ and have your child complete: – Superman or Aeroplanes where your child stretches out while laying on their tummy. Try to lift arms and legs off the floor with hands facing forward and palms down. • Plank positions: – Four point kneel, where your child assumes a crawling position on hands and knees. Have them extend opposite arm and leg for 5 sec each – try to increase the time held each set! – Elbow plank, where your child uses their elbows/forearms and toes for support. • M ake sure their back is straight, and their bottom doesn’t slouch down or extend upward. • Time how long they can hold this for, and aim for 30 seconds. • E ncourage your child to try new equipment at the playground, e.g. swings, climbing, monkey bars, slides and poles are all activities that assist in increasing core strength. Encourage your child so sit with correct posture during seated activities. By Sophie Bilsborough
Occupational Therapy Helping Children is situated on Sydney’s Northern Beaches. The team help children with a variety of developmental challenges thrive in their own special way. The offer individual therapy services, group therapy and run the Sense Rugby program. occupationaltherapy.com.au Ph: 02 9913 3823
I SSU E 27 | WI N T ER 2021 57
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I SSU E 27 | WI N T ER 2021 59
Entertainment IS FOR EVERYONE! Does the idea of taking your disabled child to a live performance sound like an impossible dream? Accessible entertainment is becoming more common – here’s what to think about.
I
n my pre-child days, camping out overnight on the footpath outside of the box office trying to get tickets for my favourite band wasn’t unheard of. As a parent, I’m now more used to hovering over my computer keyboard, frantically refreshing my screen as I try to book seats to my kids’ favourite acts. With a disabled child, though, it’s not so straightforward. What is simple – and sad, and frustrating – is that if I want to take my disabled child to a live event, it’s going to cost me a lot more in time, money spent, and effort than another parent trying to go to the same show. For my four-year-old’s recent outing to see The Wiggles on tour, it took four presales, six phone calls, a slew of emails, and a couple of hours trawling websites before I managed to book what I hoped were the best seats for her needs. My daughter is vision impaired, so we needed close proximity to the stage; the venue had “accessible” seating but it was
6 0 SO U RCEKI DS .CO M . AU
geared toward wheelchairs, and too far away for her to be able to see anything. That’s how we ended up three rows from the front, and paying for the “privilege” of disability to get those seats. The Wiggles were fantastic, and seeing my daughter’s reaction to her singing, dancing heroes brought me to (happy) tears. But for many parents, the challenge of taking a disabled child to a live performance can feel very intimidating. If you’re thinking about taking your child to a live performance or event, here are some ideas that might make things a bit more fun and a bit less stressful.
“Accessibility” isn’t onesize-fits-all Most major venues have areas for people who use wheelchairs, and their companions, to enjoy the show with dignity and comfort. Mobility parking areas are also helpful, and for major events, venues will usually offer dropoff areas right next to the entrance so that people with limited mobility or in wheelchairs don’t have to battle crowds to get from the carpark to the front door. Entrances with wide automatic doors, ramps, spacious lifts, and disabled toilets with appropriate changing facilities should be standard for big venues, but aren’t
The website changingplaces.org.au has a “master list” of Changing Places facilities, which are suitable for people who cannot use standard accessible toilets, include a height-adjustable adult-sized change table, ceiling hoist, and more, and require an access key. The website also tells you where to find events and festivals that will be using Marveloos and Placeable Pods (portable accessible toilets).
ACCESS ALL AREAS
BE PREPARED always in place, so it’s best to check venues directly to see if they have what you need.
Look for “friendly” events Many venues and acts are waking up to the reality that making events disability accessible benefits everyone. Some will even put on special performances, so look for these: • Relaxed, autism-friendly, or sensory sessions – the environment, lighting, sounds, and audience expectations have been adjusted to be more comfortable and flexible for those with sensory difficulties, audience members can usually move around as they need to, and a “quiet space” may be available if you need a break • Hearing loop – offers people with hearing aids the ability to boost the sound from the performance directly into their hearing devices • Auslan interpretation – live signlanguage interpreter • Audio-described – verbal commentary for vision-impaired audience members that explains what is happening onstage • Live captioned/subtitled – text on screens at the front of a performance, on a device, or via an app on your phone/tablet, featuring sound effects, music descriptions, song lyrics, and characters’ names along with the text • Immersive or hands-on – may allow children to sit among performers or musicians, touch costumes, props, and instruments, and interact with aspects of the performance
Call the accessible ticket line Ticketing agents usually have special phone lines you can ring to make accessible bookings; check their websites for instructions on where to call. Sometimes, you’ll need to contact venues directly to book accessible seats. Here’s a hint: Call before the presale (or before tickets go on general sale) to ask how you can make a booking for your child, as the phone lines are often swamped on presale days.
1
TAKE A HELPER.
An extra adult can make all the difference to your child enjoying their outing to the event.
3
FIND OUT ABOUT THE VENUE.
2
If you’ve never visited the venue before, give them a call (or a visit)
out seating, to
SUSS OUT THE PARKING BEFOREHAND.
having one person
Find out where the
will take place.
to stay with your
most accessible
Ask about toilets,
child while the other
parking is located
changing areas,
gets refreshments
and the easiest
whether there are
(or visits the merch
way to get to it. For
kitchen facilities,
stand), to simply
children with limited
where you can
seating the child
mobility, you may be
dispose of medical
between you so you
able to drop off near
waste, if there is a
can create a little
the door and then go
“quiet space” you
“bubble” for the
park the car.
can retreat to for
From sending an adult ahead to scout
and check out where the event
child to feel secure
feeding or to take
in, having a spare
a break, and what
grownup along can
happens if there’s
be really helpful.
an emergency.
Strength in numbers Do you have friends who would like to go to the same show, or do you belong to a parents’ group or support network who could approach a venue, promoter, or ticketing agent to ask for accommodations to be made? It’s often easier to band together as a group, so use whatever capital you might have to benefit not only your child, but other children who would love to go see a performance too. Get in touch as a group well ahead of the onsale date, as including your group in the event’s planning is more likely when the details are still being worked out.
Feedback is important If something goes well and the venue does a great job of accommodating your child’s needs, tell them about it – it may encourage them to offer more accessible events in the future. If you have suggestions for how accommodations or improvements can be made, mention
them. Although venues are becoming ever more aware of their responsibilities toward disabled patrons, they may need to retrofit, renovate, or simply rethink how they’ve “always done things” to ensure the performances they host are truly equitable for everyone.
Don’t expect perfection When you spend a lot of money, time, and effort on ensuring your child can attend a special event, concert, or performance, and then things go awry, it’s hard not to get swept up by disappointment. If your child has fun for a little while and then you have to cut things short, it’s okay to be upset about it, but it’s also okay to celebrate the fact that you got to have fun together while it lasted. Every experience is a learning experience – maybe next time it’ll be easier because you know you can do it! By Katherine Granich I SSU E 27 | WI N T ER 2021 61
I N A S S O C I AT I O N W I T H
When to consider renting equipment for your child’s needs Did you know it’s possible to hire all sorts of assistive equipment for your child? Here are some scenarios for when renting might be the right option for you.
In this situation you may want to consider
Short term use
renting a chair that is more specifically
Short term use is when someone doesn’t
suited to your child’s needs. Seat-to-floor
need their equipment long term, it may be
height or seat elevate, for example, may be
part of rehab or assist in getting home from
essential to maintain independent transfers.
hospital post-surgery. Short term rental can also be an option
Waiting for the funded solution
when you are travelling and may not want
Interim use
In Australia an assessment is completed,
or be able to you’re your child’s regular
Interim use can refer to short term use whilst
equipment trialled and then an application is
equipment with them. Travelling and
waiting for your regular equipment to be
made for funding. Once funding is approved,
resources may mean that you take a manual
funded or repaired. Whilst there are various
the equipment is ordered and an average of
chair with you but an older child may want a
funding models for equipment, each of these
6-8 weeks later, the equipment is delivered.
powered chair to explore and independently
works in slightly different ways and have
Renting equipment can also assist
access locations as they would normally at home in their power chair.
different processes. There are also different
therapists and users to identify how certain
waiting times within each model and whilst
features or configurations can impact on
most will offer funding or a means of
function and assist in identification of
Intermittent or occasional use
repairing equipment, rental equipment can
potential solutions to trial. In Australia the
Off road or all terrain chairs and beach
help people to continue with their day-to-day
trial time is limited to an appointment with
chairs are often essential to access certain
life without access to equipment to support
the supplier, which only provides a small
locations. These chairs will not usually be
their mobility. For example; an interim use
snapshot of the user’s life and function. It
practical for everyday use, so can be a large
chair may be required based on the user’s
may be appropriate to consider options for
cost for occasional use that don’t meet some
needs while they await assessment, funding
a longer trial period to fully identify what
funders’ criteria. Renting can also fulfil a
or delivery of new equipment.
works and doesn’t work for your child.
person’s needs in these times.
During repairs and maintenance The service provider completing repairs and maintenance may have a mobility base
Permobil’s rental program offers complex power chair setups, manual chairs,
that can be borrowed, however if a user’s
paediatric equipment, off road wheelchairs, seating and positioning products,
mobility base has certain features or specific configuration, a non-complex loan chair may not meet their functional needs.
62 SO U RCEKI DS .CO M . AU
as well as accessories and customisation products to suit your needs. Head to hub.permobil.com.au/rental to find out what products you can rent from Permobil.
M O GO
E ST 1980
CUSTO MW HE ELC
HAIR S
I SSU E 27 | WI N T ER 2021 63
Disability Sports Australia talks to us about their initiatives to broaden sport access for all children with a disability.
Making sport MORE accessible
P
roviding opportunities for children with disability to participate in meaningful activity is at the core of Disability Sports Australia, with a number of programs expanding across the country to engage even more participants. Disability Sports Australia CEO Murray Elbourn says the peak body’s focus has historically been physical disability, including cerebral palsy, amputee, quadriplegic and paraplegic athletes, as well as those in short stature. But it has broadened its focus over the last 6 months, since he took over as CEO in October, 2020. DSA now oversees the Activate Inclusion Sports Days in partnership with Variety – The Children’s Charity NSW/ACT and Sport NSW, to engage with students aged from 5-18 with a physical, sensory or intellectual disability, including autism, anxiety, ADHD and learning difficulties. The move has proven a big success, with DSA embarking upon a national expansion, with Northern Territory and Tasmania now linked in and Victoria also likely to trial the program this year.
6 4 SO U RCEKI DS .CO M . AU
Murray says the program is now the largest of its kind in Australia, with over 7000 students with disabilities participating since 2016. “The benefits are the ability to build confidence in kids who don’t have equal rights to equal play. Schools don’t have adaptive equipment in many cases and teachers aren’t trained to deliver these activities,” Murray explains. DSA also facilitates Start Up Kidz, a research program which tracks the participation of children with a physical disability in primary school. Start Up Kidz will now move to a national camp model allowing mainstream national sporting organisations to further deliver adaption for participants with disability. Making it easier for people to access programs has been a challenge and
DSA will have a strong focus on its new National Referral Hub, which is being sponsored by NDSP Plan Managers. “The hub will have a soft launch in July with a full launch in September and will enable health providers, teachers, families and carers to refer through email, phone or web form,” Murray says “We are doing this because feedback has been many people don’t know where to start looking for information and linking people to our vast network of members and partners will greatly assist the greater disability community.” DSA has 5 full-time and 2 part-time employees, with 12 state and territory members who predominantly run their state and territory based programs. “DSA supports those state programs in hosting National Championships for Wheelchair Rugby and Wheelchair AFL
SPORTS
each year,” Murray explains. “We also offer training and education programs to mainstream national sporting organisations through our Sports Incubator model. This establishes an inclusion framework for sports to enter into the adaption and inclusion space.” The main aim of DSA is to increase awareness of all aspects on the disability spectrum, increased confidence for those participating and more opportunities through both community sport and social active recreation. It’s a passion close to Murray’s heart – his first involvement in disability sport was in 1987 at the age of 15. “I was born with scarring on my cornea in both eyes but had enough sight to play mainstream T-Ball, Rugby League and Basketball until I also developed cataracts in both eyes, causing me to be nearly totally blind until I had surgery to remove cataracts at age 29. "Having lived experience has really helped me to understand the challenges that people with disabilities face.” That is also true for 2016 Paralympic athlete Rae Anderson, who is DSA's Project Coordinator for the Activate Inclusion Sports Day Program in schools and Start Up Kidz. Rae has left side hemiplegic Cerebral Palsy and has competed in athletics in the F37 category and in Alpine Skiing as an LW9-2 athlete – she is currently a recipient of a NSWIS scholarship with Snow Australia and is aiming for the Winter Paralympics in 2022. She says it’s special to watch the students realise that they could one day be a Paralympian like her. “I love seeing all the hard work come together for the events and seeing all the smiling faces of future athletes finding their love of sport,” she says. “I love being at the events and talking to students with similar disabilities to mine, telling them my story; what I’ve achieved, what I’m aiming for and how I started my Paralympic pathway through a similar multi-sports day program.
“If your dream is to compete internationally, it is so much easier when you love every minute of it.”
“I tell them to enjoy every moment, every sport and every opportunity - to try every sport on offer and say ‘yes' to every opportunity. “If your dream is to compete internationally, it is so much easier when you love every minute of it. You never know where sports could take you. Have big goals and dreams, and surround yourself with a supportive team to make these dreams a reality. “Sport has created so much opportunity for me. I have travelled the world, made
some incredible friends and had so many more opportunities like working for Disability Sports Australia. Sport has allowed me to live such a full life; all my sports and training has improved my quality of life with my Cerebral Palsy as well. “Sport has so many obvious physical, social and mental benefits however it has also maintained my physical abilities related to my disability. I want to see more kids with disabilities involved in sports, not only to see the next generation of Paralympians but to see their everyday quality of life flourish." By Rachel Williams
I SSU E 27 | WI N T ER 2021 6 5
Watche s R ead s
&
Books and shows on our radar right now…
E V E RY DA Y S E L F - C A R E A N D YOUR HIGH NEEDS CHILD How do you prioritise your own
BEST SUMMER EVER
health when you’re the parent of
A fresh and exhilarating take on the beloved teen musical
a high-needs child?
genre featuring eight original songs and a mixed cast and
Natalie Brobin’s life turned upside
crew of people with and without disabilities? Yes, please!
down when she found herself struggling
This feel-good film follows Sage and Tony, a pair who meet
to care for a daughter with Turner
and fall in love at a summer dance camp before going their
Syndrome—a rare chromosomal
separate ways, only to end up at the same high school
disorder which can cause heart defects
where their worlds collide. Best Summer Ever was made in
and delayed growth, among other health
connection with a real camp, Zeno Mountain Farm in Vermont,
issues, particularly in girls.
which hosts annual retreats for people with disabilities as
Everyday Self-Care and Your High-
well as other marginalised groups.
Needs Child provides concrete ideas
Currently available on US digital streaming platforms but
on how to reduce stress through
we’re sure it will make it to our shore soon!
breathwork, meditation, nutrition, healthy sleep, therapy, laughter and positive outlets for stress.
FUTURE GIRL BY ASPHYXIA One for fans of the YA genre - Future Girl explores what it means to come of age as a Deaf teenager, against the backdrop of a near-future Melbourne on the brink of environmental catastrophe. The book is the art journal of sixteen-year-old Piper, a visual extravaganza of text, paint, collage and drawings, woven into a deeply engaging coming-of-age story set in near-future Melbourne.
L O V E O N T H E S P E C T RU M S E A S O N 2
Author, Asphyxia is an artist, writer
One of our favourite shows is back! Love is in the air once
and public speaker. Deaf since the age
again when the award-winning Love on the Spectrum returns
of three, Asphyxia learnt to sign when
for a second season with a few familiar faces, and some
she was eighteen, which changed her
delightful new ones. The show follows a group of young autistic
life. She is now a deaf activist, sharing
Australians as they navigate dating, relationships and love –
details of deaf experience. She raises
and the difficulties that come with it.
awareness of oppression of deaf people
Watch on ABC Australia and ABC TV + iview.
and what we can do to change this.
LISTENABLE Dylan Alcott and Hit Weekend Breakfast host Angus O’Loughlin’s podcast series sets out to challenge people’s perceptions of what it’s like to live with a disability. Each week, the engaging pair speak to people living with disabilities about their lives and ask them the questions you thought were off-limits. You’ll laugh. You’ll cry. You’ll learn something.
6 6 SO U RCEKI DS .CO M . AU
Apps for speech & language development
Check out these apps where you and your child can have some fun while working on different aspects of their speech and language skills.
WATCH, READ & APPS
is a basic concept that helps child build
journey towards speech milestones with
their semantic knowledge but also their
activities including video modelling to copy
world. Classifying and categorising
and repeat, role-play with fun filters,
provide the foundation for problem
a mouth gym, literacy, phonological
solving, remembering and integrating new
awareness and more.
information. The animation and colourful graphics in the app makes the learning process fun and motivating as children
TALKIE ARTICULATION Talkie is an innovative articulation
classify and organise different objects as
app designed to help children learn and
they pack boxes, put different objects on the
practice speech-sound production. It can be
wagons and throw certain objects in the bin.
used in a clinical setting with a speechie as well as for home-practice for reinforcement
OTSIMO SPEECH THERAPY
of skills. Five attractive, fully illustrated
Otsimo Speech Therapy SLP is
games – and bonus games – help children
designed to develop receptive language
ARTICULATION STATION
abilities and to improve the articulation of
This articulation app is loved by
children experiencing speech difficulties.
learn and practice sounds while having fun.
THE SCHOOL OF MULTISTEP DIRECTIONS
speech therapists and parents alike. With
Video modelling, voice recognition and fun
activities and beautiful graphics at the
stickers, masks and filters combine to make
Another app to work on listening and
WORD, PHRASE, SENTENCE and STORY levels
speech therapy a fun activity that can take
comprehension skills. This app is built
targeting 22 sounds in the English language,
place anywhere whenever the mood strikes!
around the theme of school and allows children to follow increasingly longer
your kids will love practicing their sounds and forget they are actually “working” on their articulation.
SPEECH BLUBS
and more complex multi–step unrelated
The highly regarded Speech Blubs is
directions in three different “classroom”
a language therapy app with a vast library of
settings such as English, Maths and a
FACTORY OF CATEGORIES
more than 1,500 activities, face filters, voice-
science lab.
The ability to group objects
activated activities, and educational bonus
*Check your app store of choice for availability and pricing.
according to their common characteristics
videos. It will take your child on a fun-filled
Large bodysuits to assist everyday living • unisex onesies to help keep wandering hands out of nappies & pants • deters inappropriate undressing & other challenging behaviour • range includes tummy access styles designed for tube feeding
back zip fastening detail
• available in sizes for kids & adults • tag free with various styles to suit all seasons
www.wonsie.com.au
I SSU E 27 | WI N T ER 2021 67
KEY
Standers & Walkers
T
Toddlers
C
Children
Y
Youth
A
Adults
What’s on the market right now to support upright postures in children with mobility issues. T C Y A
T C Y A
LECKEY HORIZON STANDER AGE: 4 years to 18 years WEIGHT: Up to 100kg HEIGHT: 82cm to 145cm KEY FEATRURES • P erfectly sized for hoisting and
R82 CARIBOU T C Y A
supine standing. The large landing
AGE: 1 year to 24 year
space for hoisted transfers coupled
WEIGHT: Up to 100kg
with support pads which provide
HEIGHT: 60cm to 184cm
a proximal fit to suit each user
KEY FEATRURES
provides the perfect combination.
• Easy transfer as the Caribou can tilt
• Robust, stable and durable frame ensures ongoing confident
from vertical to horizontal. • A natomic design and soft mouldable
product use. • Individually adjustable chest, hip and
PU for ultimate comfort. • Available in four sizes to accommodate
knee pads as well as footplates provide unsurpassed levels of adjustability
a wide range of users.
RABBIT UP STANDER
The Caribou is a standing frame that
A revolutionary 3-in-1 stander, The
supports a prone or supine standing
LECKEY Horizon is designed for users
AGE: 2 years to 24 years
position with the ability to switch from
from kids to adults with complex
WEIGHT: Up to 70kg
a horizontal to a vertical position.
postural needs.
HEIGHT: 60cm to 180cm
r82.com.au (*From 1 July 2021 changing
sunrisemedical.com.au
KEY FEATRURES
to etac-au.com)
activerehab.com.au
• W hile meeting all your standing needs, the Rabbit Up offers the independence to explore using the optional driving wheels.
E XPLORER MINI
• T he Rabbit Up has a simple, easy to use and controlled angle adjustment, making it
AGE: 12 months to 36 months
possible to obtain the best standing position.
WEIGHT: Up to 15.9kg
• T he Rabbit Up comes in four sizes and can be
HEIGHT: Up to 100cm
used at home or at school. The Rabbit Up is an adaptable, secure and reliable stander that offers independence to explore using optional driving, quick release wheels. R82 Australia Pty Ltd (*From 1 July 2021 changing to Etac ANZ) r82.com.au (*From 1 July 2021 changing to etac-au.com)
6 8 SO U RCEKI DS .CO M . AU
KEY FEATRURES T
• Empowering developmental mobility. • Maximise early learning. • On-time mobility. The Explorer Mini is an ergonomic device with multiple weight bearing surfaces to help promote safe, stable upright postures. permobil.com
PRODUCT REVIEW
BUDDY ROAMER
T
AGE: All ages
C T
Y
C
A
WEIGHT: Up to 100kg HEIGHT: 70 to 200cm KEY FEATRURES • Central positioning bar with abduction pad to help improve gait. • Handholds and bumper bar available. • S wing-away shoulder positioners to minimise fatigue. A posterior walking aid that provides partial weight bearing postural support with mobility. Allows you to walk around freely and unaided. Designed to meet mild, moderate and complex users’ needs. dejay.com.au
JENX MONKEY STANDER AGE: 9 months to 4 years WEIGHT: Up to 25kg
standing aid that provides prone to upright
PEDI ATR IC QUAD STICKS
position for children.
AGE: 1 year to 13 years
KEY FEATRURES • T he Monkey Stander is a highly adjustable
• T he Monkey Stander lets children practice
WEIGHT: Max user
weight bearing to achieve better hip
weight of 100kg
development and bone density. Ideal for a
KEY FEATRURES
first prone or upright stander.
• Comes in 3 sizes
• T he Monkey can go from upright at 90 degrees all the way down to 20 degrees prone. • T he Monkey comes as a complete unit and
T C Y
• Made from lightweight aluminium. • 4 point for extra stability. Quadsticks are paediatric
with tool free adjustments, is easy to set up
walking aids in the form of
so it can be used straight away!
walking sticks with four-point bases and positional
T he Monkey’s chest and hip boards can be
handles. They are useful for children who can
independently altered and fixed, allowing
hold their body weight and have lateral, but
the exact proportions of every child to be
not backwards balance reactions. Made from
provided for.
lightweight aluminium, they are easy for kids to
activerehab.com.au
carry and are easily transportable.
astris-pme.com.au
activerehab.com.au
T C
L E C K E Y S Q U I G G L E S+ AGE: 1 year to 16 years WEIGHT: 25kg to 80kg HEIGHT: 63.5cm to 149cm KEY FEATRURES
T C Y A
F LU X WA L K E R
• 3 in 1 stander, offering prone,
AGE: All ages
• Highly adjustable providing
WEIGHT: Up to 100kg KEY FEATRURES • T he fold away seat can be moved aside to ensure easy walking. • D ynamic hip control is multi-directionally
upright, and supine. a personalised fit. • A natomically-correct hip abduction of up to 60°. • Practical and easy to use for parents.
adjustable and with the hip belt offers additional
The Squiggles+ offers 60°
support while walking.
hip abduction which can be
• S turdy anti-tips to keep you safe.
achieved in prone or supine.
Posterior walking aid which promotes upright
This stander promotes proper
posture and natural walking movements. Grows
alignment in the hips, knees and
with you – the only walker with height, vertical &
feet while supporting your child.
horizontal adjustment. dejay.com.au
activerehab.com.au
I SSU E 27 | WI N T ER 2021 6 9
DA S H WA L K E R AGE: 4 years to 13 years WEIGHT: Max user weight of 86kg KEY FEATRURES • Folds easily for convenient transporting. • Front swivel wheels enhance
C Y
maneuverability and ease of turning.
T
• Skid resistant, easy rolling wheels are
C
ideal for indoor use. • A luminium frame in bright anodised
Y
finish.
A
A paediatric walking aid that encourages trunk extension and upright posture by support from behind. The Dash is height
M E Y WA L K WA L K E R
R I F T O N PA C E R G A I T T R A I N E R WEIGHT: 50kg to 200kg
adjustable with anti-reverse rear wheel
KEY FEATRURES
AGE: All ages
mechanism and front swivel wheels to
• Lightweight aluminium folding frame.
WEIGHT: Up to 130kg
improve maneuverability. Thanks to a
• Folding frame that fits easily into car
HEIGHT: 70cm to 200cm
foldable aluminium frame the Dash is
KEY FEATRURES
lightweight and easily transportable.
• Easy tool-free adjustments.
• Sling seat for additional support.
activerehab.com.au
The Pacer Gait Trainer is versatile and
• Activity tray to support your ipad or for
a fully adjustable without the need for
T
meal time. • P ush bar on the small sizes to enable
tools and it's lightweight, aluminium frame folds down easily into the boot
C
attendant assistance.
of a car or for storage.
Y
Unique spring suspension system which
boots.
astris-pme.com.au
stimulates the muscles of the participant and promotes natural gait movement. Easy transfer with the built-in swing bar that lowers and raises the seat and trunk support. Ideal for wheelchair dependant people of all ages. Provides a high degree of aid and support to stand up and walk. dejay.com.au C Y
J E N X M U LT I S T A N D E R AGE: Up to 13 years WEIGHT: 35kg to 60kg HEIGHT: 116cm to 175cm KEY FEATRURES • Infinite Angle Adjustment: Support surface angle can be adjusted from 10° off horizontal through to
ORME SA GRILLO
upright at 90°. This adjustment is
WEIGHT: 35kg to 110kg
infinite within that range to ensure
HEIGHT: 75cm to 190cm
the exact angle necessary for a
KEY FEATRURES
child can be achieved.
• Front drive (4 versions) and posterior (3
• E xceptional growth range and T C
versatility: Size Two can be used by a child at the start of their school
include anti-reverse, rear drag, front
life and grows with them until they
and back directional locks. Wheels are
are 13 years old, providing a great 10 years of growth. Outstanding thoracic and pelvic
70 SO U RCEKI DS .CO M . AU
versions); just one frame • Newly designed wheels: Features
suitable for indoor and outdoor use. • Adjustments are fast and safe and can be made with the person in the walker.
support coupled with highly
Its versatility makes it a great choice
adjustable leg positioning options
for use at home, school and other
also make the Multistander a great
social environments. Available in four
option for almost every child.
sizes (Mini, Small, Medium and Large) with
activerehab.com.au
rear and front drive options.
astris-pme.com.au
astris-pme.com.au
PRODUCT REVIEW
JENX STAND AGE: 1 year to 9 years WEIGHT: Max user weight of 45kg HEIGHT: Max user height of 138cm KEY FEATRURES • Individual leg abduction offers the ability to independently adjust either leg from 0-30 degrees. • Built in safety lock for frame angle
T
C
adjustment.
C
• Prone or supine standing.
Y
• Easy tool free adjustments. Standz abduction standing system
L E C K E Y M Y WAY WA L K E R
offers prone and supine abducted
A K C E S-M E D S M A RT ™ S T A N D E R
AGE: 1 year to 16 years
standing (of up to 60°). Standz is
WEIGHT: 25kg to 80kg
available with a full range of accessories
HEIGHT: 55cm to 110cm
HEIGHT: 63.5cm to 149cm
to accommodate all users.
KEY FEATRURES
KEY FEATRURES
activerehab.com.au
• S turdy frame made with quality
WEIGHT: 35kg to 95kg
steel and timber construction.
• T he harness moves with the child's
• 3 -D knee support adjustable in 3
movements, it is not stiff or rigid, therefore helping replicate a more natural upright movement pattern. • Promotes function as the superior postural
T
directions to provide more comfort
C
• Footplate with adjustable sandals for
during use. stabilisation.
support it provides allows children to focus on moving and participating to the best
SMART™ Stander by Akces-Med is a
of their ability, rather than on issues such
sturdy upright standing frame that
as trying to keep their head up, feeling
provides many benefits for both the client
unstable etc.
and carer because it enables a person to
• T he possibilities for play activities are
adopt an upright position which is safe
endless in MyWay including football,
and comfortable and highly supportive.
pushing a doll’s pram, playing at the sandpit
astris-pme.com.au
or doing table-top activities. The MyWay maximises opportunities for independent movement and giving children the freedom to explore their world. The genius behind this is MyWay’s revolutionary supportive harness and minimalist openfront, hands-free design.
C
sunrisemedical.com
Y
T C Y
TIMO ELLA STANDER AGE: 0 to 18 year
R82 MEERK AT
WEIGHT: 30kg to 80kg
AGE: 1 year to 24 year
HEIGHT: 60cm to 180cm
WEIGHT: Up to 80kg
KEY FEATRURES
HEIGHT: 50cm to 180cm
• Only one tool required for setup and
• D ynamic standing to encourage the
adjustments. • Reliable, low-maintenance with intuitive functions and simple adjustments. • Easily adapted to that specific need, saving time and effort. Adapts easily into the most demanding
child’s freedom of movement. • A ll supports are intuitively easy to use and adjust, making life easier for parents and carers. • Available in three sizes with growth adjustable accessories.
needs related to standing. Increasing
The Meerkat is a simple upright standing
muscle tone, stretching the muscles,
frame with adjustable support for feet,
strengthening the bones and ligaments,
knees, pelvis and chest and can be used
while preventing postural disorders can
in the anterior or posterior position.
be done effortlessly with the Ella.
r82.com.au (*From 1 July 2021 changing
astris-pme.com.au
to etac-au.com)
I SSU E 27 | WI N T ER 2021 71
VIC / TAS
Magician
LACHLAN WILDE Presents a wonder-filled magic show featuring incredible moments of magic! You will be kept on your toes as impossible magic happens right before you...
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LACHLANWILDE.COM
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For more info contact advertising@sourcekids.com.au
181 Balcombe Road, Beaumaris Ph. 9583 1378
reception@happysmilesforkids.com.au HSKsMrMiso
hsfk_mrmiso
Children’s respite services in Cranbourne and Frankston
A home away from home! Offering planned short-term overnight stays for children with disability aged 6 – 17.
• • • • • •
Have fun, make friends, socialise and learn new things Enjoy fun-filled activities and great outings Watch your favourite movies and shows on Netflix and Foxtel A backyard playground designed for hours of play Dedicated and experienced disability support staff Funding for respite can be accessed from your NDIS Plan
72 SO U RCEKI DS .CO M . AU
respite@melbasupport.com.au | 03 8763 4300
VIC / TAS
If you have asked these questions...
How do I start toilet training?
Toilet training has not worked, what next?
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topcattreasure.com.au
I SSU E 27 | WI N T ER 2021 73
Winter Winter School School Holiday Holiday Program Program Does your child become bored in the school holidays? Does your child become bored in the school holidays? Would you like your child to have interesting and stimulating activities to do? Would you like your child to have interesting and stimulating activities to do? Are you worried that your child with a disability may not be well cared for? Are you worried that your child with a disability may not be well cared for?
Allowah’s Allowah’sSchool SchoolHoliday Holiday Program Program may may bebe the the answer! answer! WEEK 1: 28th June - 2nd July
WEEK 1: 28th June - 2nd July
Seals, penguins, whales and sea birds, Seals, penguins, whales and sea birds, Ice, snow and glaciers, Ice, snow and glaciers, Let’s rug-up as we explore the winter Let’s rug-up as we explore the winter wonderland that is ANTARCTICA! wonderland that is ANTARCTICA!
Songs, dance, rhythm & rhyme. Let’s get creative Let’s get creative and have a great time! and have a great time!
Let’s Let’sgo goon onan anadventure adventure to to
The TheAllowah AllowahSchool SchoolHoliday Holiday program is run by our program is run by oursupport support workers and assistants workers and assistantsin in nursing nursingwho whoare arefully fullytrained trained totoprovide providepersonal personalcare careand and eating / drinking support eating / drinking support for foryour yourchild. child.
WEEK 2: July - 9th July WEEK 2: 5th 5th July - 9th July Songs, dance, rhythm & rhyme.
A Ag ge ess 55--118 8
Let’s make music
Allowah Allowahstaff staffhave haveexperience experiencein in caring caringfor forchildren childrenwith withdisabilities disabilities and andcomplex complexmedical medicalneeds, needs,so so your yourchild childwill willhave haveaahappy, happy,safe safe experience. experience.We Wewill willmeet meetwith withyou you prior to your child attending prior to your child attendingthe the Allowah AllowahSchool SchoolHoliday Holidayprogram program so so that we can get to know what that we can get to know whatyou you and andyour yourchild childneed. need.
The The School School Holiday Holiday Program Program can can be be paid paid for for from from the the core core supports supports budget budget in in your your child’s child’s NDIS NDIS plan plan or or through through private private payment. payment. Come Come for for one one day, day, come come for for aa couple of days and stay overnight couple of days and stay overnight or or come come for for aa whole whole week week of of fun! fun!
Give Give us us aa call call to to find find out out more more or or to to book. book.
Call Call02 028877 8877 3400 3400 and and ask ask for for Maura Maura Hanney Hanney or or send send an anemail email to to maura.hanney@allowah.org.au maura.hanney@allowah.org.au 88Perry Perry Street, Street, Dundas Dundas Valley, Valley, NSW NSW 2117 2117 www.allowah.org.au www.allowah.org.au
NSW / ACT
MyTime Parent ParentSupport SupportGroup Group MyTime Sometimes you just need to talk to people who ‘get
Sometimes you just need to talk to people who ‘get it’. That’s one reason our MyTime support group it’. That’s one reason our MyTime support group continues to grow. We welcome anyone who cares continues to grow. We welcome anyone who cares for a child with a disability to come and chat. for a child with a disability to come and chat.
Disability Support SupportServices Services Disability Allowah Disability Support Services is a fully
Allowah Disability Support Services is a fully accredited disability support provider. We provide accredited disability support provider. We provide a huge range of supports, including short stay a huge range of supports, including short stay accommodation (respite) for children with high level accommodation (respite) for children with high level needs, after school care, holiday programs, needs, after school care, holiday programs, mid-week adventures, support coordination, mid-week adventures, support coordination, therapy and early intervention. therapy and early intervention.
Contact 02 8877 3400 or email Contact 02 8877 3400 or email admin@allowah.org.au to find out more. admin@allowah.org.au to find out more.
Weekend Programs
ATTEEDD C O L A Y C L O L L A Y R CCEENNTTRAL
Allowah’s Weekend Weekend Program Program is is aa great great way wayfor forkids kidsto to Allowah’s spend time doing a range of fun activities in a safe and spend time doing a range of fun activities in a safe and caring environment. environment. We We have have aa team team of of experienced experienced caring Support Workers who work with children withaarange range Support Workers who work with children with of disabilities. And for kids with complex disabilities of disabilities. And for kids with complex disabilities and medical medical needs needs we we have have clinical clinical staff staff on-site on-siteto tolend lend and a hand in need. a hand in need. Kids are are engaged engaged with with activities activities that that are are fun funand and Kids interactive, growing growing experiences experiences and and life life skills skillsin inaaway way interactive, that they enjoy. Storytelling, craft, cooking, outdoor that they enjoy. Storytelling, craft, cooking, outdoor adventures, games, games, singing… singing… and and lots lots of of laughter. laughter. adventures, The Weekend Program and accommodation canbe be The Weekend Program and accommodation can funded via NDIS. funded via NDIS.
Weeaarre W e aannNNDDIS IS rreeggisiste terreedd pprroovvid ideerr
PresbyterianChildren’s Children’sHospital Hospital Presbyterian and Disability Support Services and Disability Support Services Children can can come come for forthe theday dayor or Children come and and stay stay for for the theweekend. weekend. come
028877 88773400 3400||admin@allowah.org.au admin@allowah.org.au 02 PerryStreet, Street,Dundas DundasValley, Valley,NSW, NSW,2117 2117 88Perry www.allowah.org.au www.allowah.org.au
Dance and Music
NSW / ACT
DANCE AND MUSIC THERAPY • PENRITH • RICHMOND • CROWSNEST • CASTLE HILL • WETHERILL PARK Contact us for interest in your area
Therapy Classes for * Early Intervention * Children to Adults Offering specialised and safe support
Dance and Music Therapy Classes for * Early Intervention * Children to Adults Offering specialised and safe support
Follow Source Kids FUN – MUSIC - DANCE MOVEMENT
FUN – MUSIC - DANCE MOVEMENT Meaningful and Purposeful Capacity Building
Enrolments limited for class sizes ®
Meaningful and Purposeful Capacity Building ALL in a Fun, Sensory supported environment
ALL in a Fun, Sensory supported environment
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ON INSTAGRAM & FACEBOOK
Improve your childs’:Improves childs’: DANCE andyour MUSIC THERAPY DANCE and MUSIC THERAPY Motor Skills Motor skills PENRITH Verbal / non RICHMOND Postural development PENRITH verbal CROWS NEST RICHMOND Enrolments limited class sizes Verbal/non verbalforcommunications Communication CROWS NEST Social Awareness / Social awareness/Social thinking Contact Us to experience this fun and innovative Enrolments limited for class sizes Social Thinking therapy :- 040749801 Functional development Check outemotional our Facebook page Functional Contact Us to experience this fun and innovative Emotional Contact us totherapy experience this :- 040749801 Development Check out our Facebook page fun and innovative therapy
0407 498 010 sharyn@dotsdanceoverthespectrum.com Email:- sharyn@dotsdanceoverthespectrum.com Web: www.dotsdanceoverthespectrum.com
dotsdanceoverthespectrum.com Email:- sharyn@dotsdanceoverthespectrum.com Web: www.dotsdanceoverthespectrum.com
Motor Skills
Verbal / non verbal Communication
Social Awareness / @sourcekids Social Thinking @sourcekidsmagazine Functional Emotional Development sourcekids.com.au
Professional and Experienced Qualified Teaching Low to High function ability classes available For Varying Disability Requirements All enquiries welcome Limited class sizes
Email:- sharyn@dotsdanceoverthespectrum.com Web: www.dotsdanceoverthespectrum.com
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TO ENTER THE DRAW TO WIN ONE OF THESE Email:sharyn@dotsdanceoverthespectrum.com www.dotsdanceoverthespectrum.com GREAT Web: PRIZES UP FOR GRABS GO TO SOURCEKIDS.COM.AU/WIN
Professional and Experienced Qualified Teaching Low to High function ability classes available For Varying Disability Requirements All enquiries welcome Limited class sizes
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QLD
DID YOU KNOW?
1 in 14 children have a hidden
condition called Developmental Language Disorder
Speech & Language Development Australia is the nation’s peak body supporting and advocating for the needs of children and young people with speech, language, and related disorders.
We provide a range of services including The Glenleighden School, School Support Services, Allied Health Assessment and Therapy Services, Professional Learning, and Research and Advocacy.
The Glenleighden School Australia’s leading specialist speech and language school for students from Prep to Year 12. We utilise approaches that are engaging and effective for students with speech, language, and related disorders. Teachers implement the Australian Curriculum with educational adjustments to support each student’s academic achievement. Therapists provide group-based intervention targeting skills underpinning the curriculum, as well as addressing barriers to participation in everyday life.
Find out more at www.glenleighden.org.au
www.salda.org.au
Enabling families of children with health and disability needs
Appointments filling up fast
Mount Gravatt East
Bald Hills
284 Pine Mountain Road, Mt Gravatt East, QLD 4122
Springfield Lakes
Wooloowin
Scarborough
North Lakes
Find out more www.xavier.org.au/services/community_therapy_clinics
1800 XAVIER | xavier.org.au | intake@xavier.org.au
QLD
Let CPL and Mylestones help you & your family chase the best in life. Whether it’s allied health and early intervention or employment support, we’re here to help.
Visit us at cpl.org.au or mylestones.org.au
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