Source Kids Winter 2021

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 The Discount Voucher may not be withdrawn as cash.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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18

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

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2 0 SO U RCEKI DS .CO M . AU

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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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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

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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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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

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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

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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

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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

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Providing specialist care for your child in a caring environment.

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hsfk_mrmiso

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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?

We are here to help!

Our skilled staff at Conquip work with parent and kids to develop individualised toileting advice to make sure you and your child are comfortable and understand how our bladders and bowels work.

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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!  

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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.

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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 ®

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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

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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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