Source Kids Spring 2022

ISSUE 32 / SPRING 2022

ESTATE PLANNING Protecting your child’s future

CYB E R SAFETY TIPS

ASSISTIVE TECHNOLOGY CHEAT SHEET

AUTISM Differences not deficits

+

Product review

STROLLERS

T h e e n d e n ce i ndep issue

Sc ho ol’ s ou t: W ha t ne xt ?

Mo vin g ou t of ho me

Watch the latest episodes of ChatAbility, now on YouTube ChatAbility is an exciting new panel program developed for our community to connect, engage and discuss all things disability.

Hosted by Jane Morrell, Founder and CEO of Carer Solutions, each episode explores a specific, disability-related topic with an engaging panel, and is filmed in front of a live audience.

Now live on YouTube: Episode 1:

Disability Inclusion

Episode 2:

Accessible Employment Co-hosted by Emma Price, Founder CEO of Source Group

Check it out at: tinyurl.com/ChatAbility

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40

HELLO There’s a saying that the nights are so very long, but the years are so very short.

In those early, exhausting and overwhelming days

12

50 Autism –

of parenthood, it

differences not

can feel like things will never change.

deficits

And then, all of a sudden, your child is starting school, then high school,

52

then you’re choosing outfits for their

It’s time to play

graduation ball.

– Inclusive play

For parents, the end of school can be

spaces

a period of tremendous change, worry and instability.

For our kids too.

It can also be the most beautiful of times - as you see this incredible young adult transform in front of your eyes.

56

contents

I have often wished that I could flash forward 20 years, just to get a glimpse of the future and know everything will be OK.

SPRING 2022

Coming of age – Untangling the paperwork trail

58 Supporting your young adult with

5

25

We Love

Moving out of home

7

27

School’s out: Now

Tristan’s journey to

– Protecting your

reached is that much sweeter because

what?

independence

child’s future

you know how hard your child has worked

8

31

66

The 5-step post-

Product spread

Watches and reads

34

67

Visual tracking –

Competition corner

But the truth is, I already know it will.

Sure, our journey is different, but really, so is everyone’s.

The pure joy you get from milestones

to get there.

Nothing is taken for granted.

These amazing children of ours constantly astound us.

And so we dedicate this issue to all the

school project

12 Café with an extra

spectacular young adults finding their way

serving of heart

in the world.

18

Welcome to the Independence Issue, a celebration of everything that is to come, and some practical advice on how to get you there.

Bek

Working in partnership with your school

Sight v Vision

40

decision making

61 Estate Planning

68 Assistive

Rare isn’t that rare

Technology cheat

44

sheet – Learning

Cyber safety

“NDIS speak”

– Navigating the

70

minefield

Strollers review

MAGAZINE HEAD OF CONTENT: Rebekah Devlin PRODUCT EDITOR: Kelly Wilton HEAD OF SALES & BUSINESS DEVELOPMENT: Matthew Rainsford, matthew@sourcekids.com.au // 0409 418 362

SOURCE CO. PTY LTD: PO Box 690, Noosaville QLD 4566 ABN 63 650 961 489 // sourcekids.com.au Send all letters and submissions to info@sourcekids.com.au Editorial and advertising in Source Kids is based on material, written and verbal,

HEAD OF EVENTS: Naomi Sirianni, naomi@sourcekids.com.au // 0447 755 043

provided by contributors and advertisers. No responsibility is taken for errors or

GRAPHIC DESIGN: Emma Henderson PUBLISHER/CEO: Emma Price

All material in Source Kids is subject to copyright provisions. No part of this

4 SO U RCEKI DS .CO M . AU

omissions, and opinions expressed do not necessarily reflect those of the publisher. publication may be reproduced without written permission by the publisher.

FUN STUFF

C O N TA I N T H E M E S S It’s no fun when kids are sick, but the Spewy can at least make clean up that bit easier.

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STRUCKET The Strucket is the

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– changing the way you soak, separate and drain. Invented by an Aussie mum of three, the Strucket has an interlocking strainer connection and external plug, meaning you no longer have to touch the water or the toxic mess in it! strucket.com

A M P L I F I I - A C C E S S I B L E M U S I C F E S T I VA L Amplifii is an accessible music festival coming to Adelaide on November 19 – bringing people together through the love of music. Amplifii was born from Karren Kelly’s shared passion for music with her autistic son, James: “I wanted a way for everyone to come together and celebrate through music in a safe and accessible

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encouraging independence and simplifying day-to-day tasks by breaking them down into steps. The tiles are made of magnetic timber, cleverly designed to have the magnets completely concealed inside. Flipping the tiles over to reveal a star gives a sense of achievement, encourages responsibility and provides positive reinforcement. secondscout.com.au

I SSU E 32 | S P R I N G 2022 5

FUN STUFF

D I S C O V E R I N G T H E M A N Y WA Y S T O C O M M U N I C AT E L O V E a young bear who is coming to terms

P L A Y W I T H O U R N AT I V E FLORA AND FAUNA

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shows how many ways there are to

tigertribe.com.au

Can Bears Ski? is the heartfelt tale of

communicate love. penguinrandomhouse.com

For aspiring techheads

CODE CAMP Code Camp is a school holiday workshop for those aged five to 13 who love technology.

It offers fun activities that empower kids to design, code and create – sparking a passion, so they can go and change the world! Code Camp has a fantastic range of camps perfect for aspiring Youtubers, animators, gaming coders, DJs and even the next generation of drone pilots. codecamp.com.au

M U LT I L I N G U A L I N F O R M AT I O N A C C E S S MiAccess is a website developed to raise awareness of disability and the NDIS within Culturally and Linguistically Diverse (CALD) communities. The website brings together information tailored to youth and adults living with disability and their support networks, translated in 10 community languages, as well as English, and has resources in an additional 30 languages. miaccess.com.au

6 SO U RCEKI DS .CO M . AU

POST-SCHOOL

School’s out: NOW WHAT? As her son got older, reality set in for Fiona Lawton – it was time to make a “purposeful plan” for life after school.

T

here are a few questions that can strike fear into the heart of a Special Needs Parent and one of the worst is, “So what are your plans for when they finish school?”

“No idea! I’ll cross that bridge when I get to it,” was my oft and flippant reply while my son was at school. That is, until he turned 15.

We were busy navigating puberty and growth spurts and the question started coming with an annoying frequency.

Friends, family, therapists and teachers were expecting a well-considered answer – and we had none.

You can be mistaken in thinking that post-school transition starts when the young person finishes school, but reality is, all young people need to start to contemplate their post-school pathways in Year 10. This might include making subject selections for senior years to ensure

they get into the university course of their choice, considering vocational training pathways, job options, or even toying with the idea of a gap year.

My son has a rare neurological condition called Angelman syndrome with severe intellectual disability and is a non-speaker.

He had attended a special school for all his education, and we knew that there were limited options with mainstream services for post-school employment or tertiary study.

That didn’t mean we didn’t have to plan for his future – in fact, it meant that we needed to get creative.

Finishing school was going to be a huge transition for him, given his sense of community and connection over 13 years of school, and the safe and controlled environment that he was familiar with. Plus, he had attended the same afterschool care and vacation

“It meant that we needed to get creative.”

care programs for years – everyone understood him, could communicate with him, and loved him. And that was all going to end abruptly when school finished.

Research shows that people with intellectual disabilities can experience severe anxiety and depression if a change is not managed well. Our son needed to belong to a community that was outside of his school connections. He needed to make friendships and have regular activities that would see him through into adulthood – just as his siblings had done by being members of the local sports and dance clubs.

Many of the questions we found ourselves asking were the same that we had asked his brother and sister – what were his interests, where was he going to live, how was he going to support himself, and who was going to help him?

And so began our 5-step “Post-School Project”.

I SSU E 32 | S P R I N G 2022 7

POST-SCHOOL

The 5-step Post-School Project

step 1

START PLANNING Plan to be available to help your loved one transition – whether it be through leave from work, going part-time for a period, change of career, or reallocation of time.

While a change of career or work schedule may not be possible for everyone, taking some leave or increasing family and/or funded support may help smooth the transition for you all.

We knew that our son was going to stay living at home with us, and that we needed to be available for him emotionally and physically through the post-school transition.

My husband had some long service leave owing, so he applied for it three years out to ensure it was locked in! The plan was that he would be there to support our son for the first few months after he left school.

I was going to keep working full-time, but in Year 11 when COVID-19 first hit, I was presented with the opportunity for redundancy. While it hadn’t been part of our original plan, I jumped at it and finished working in my government job early in our son’s final year. This was perfect timing as the post-school transition actually starts at the beginning of Year 12, and I was available to help chart the course.

8 SO U RCEKI DS .CO M . AU

step 2

ADJUST YOUR TRANSITION TIMETABLE TO WORK FOR YOU AND YOUR FAMILY

step 3

PREPARE A TAPESTRY OF OPTIONS

While school is a “one stop shop” of If your loved one is thriving at school and services, life in the post-school adult world well-connected with friends, then plan for does not necessarily need to look the same. them to all transition together.

It’s worthwhile to do some “Good Life If your loved one is not yet ready to leave Planning” to help identify the passions, school due to emotional preparedness, lack interests, likes/dislikes and meaningful of available post-school options, family relationships that are important for your needs, or skill development, work with the loved one. school principal to explore if they can In Year 12, we did a Good Life repeat a year.

Planning session for our son as a family.

However, if they are ready to leave It highlighted his need to feel a sense of school, then start a purposeful transition belonging and community, his love of in collaboration with outside services live music and musical theatre, a desire and school, with the to continue to learn, aim to gradually reduce and the critical need for “Friends, family, school-based activities and ongoing age-appropriate medical and allied attendance. connection with his peers. health teams, and In Year 10, we connected No one service could with two disability services offer all that we were teachers were that supported teenagers looking for, so we expecting a welland young adults in the connected with a range considered answer – of providers to create a home and with social and and we had none.” rich and varied program community access. We were looking for a “hub” – a – one where his school place where our emerging young adult could cohort was going so he could maintain hang out, be with friends and do fun things relationships and friendships; another while developing skills and independence. where he had a dedicated support worker He started attending on weekends, and to help him with physical therapy and to this gradually increased in Year 12 to a few continue to develop his communication days per week. By the end of Year 12, he and daily life skills; and yet another was attending school two days a week and provider who focussed on social connection was doing a range of activities including and community access in key interest areas sailing and gym, and life skills training on such as sailing, musical theatre classes, and the other days. outings with friends.

step 4

PLAN REASSESSMENT Not everyone receives NDIS support, but if your loved one does, then it is likely you will need to submit for a NDIS Plan Re-assessment due to Change of Situation with Post-School Transition. The timing of this will depend on the plan end date, how the funding is tracking and what your plans are. Consider submitting midway through Year 12.

You may need to consider housing – is your loved one staying home or moving out into Supported Independent Living? Will they need Special Disability Accommodation? Or are Independent Living Options something to consider?

If they are looking for a job, applying for School Leaver Employment Support (SLES) funding is imperative in the last year of school or first year out. It is typically funded for two years and for NDIS participants up to the age of 22.

Will they be undertaking study?

Tertiary study providers have Disability Inclusion Officers who will do an AccessAbility assessment to see what study support they need – and what can and cannot be provided. Being aware of mainstream services and supports is really important. The NDIS cannot, and will not, provide for everything.

Finally, what are the self-care and daily needs of your loved ones, and what informal supports are going to be able to assist moving forward? What is age-appropriate to provide and how are "Choice" and "Control" and social inclusion embedded into the everyday?

Answering these questions will help you identify what needs to be funded by the NDIS and other services.

Dressed for success − Year 12 formal

step 5

PARTICIPATE IN RITES OF PASSAGE We all have rites of passage into adulthood, and it is just as important for our loved ones to celebrate their achievements and experience the pure joy of being in the limelight – special dresses and suits, attending formals, limousine rides, graduation ceremonies, photos and parties. And… Schoolies!

Oh the joy! By far the best part of our transition were all the celebrations, moments of pause and reflection, and the big graduation – I still smile thinking about it. Our son’s formal, with the photos by the bay, the convoy of limousines and fancy cars, and the awards ceremony is a night I will never forget.

He certainly knew there was something special happening, and he grew in stature, confidence and pride with every step. From the suit fitting and shoe shopping to the “Guard of Honour” at the final assembly, our son’s face conveyed the pure delight of this most important rite of passage.

His year level even spent a week celebrating Schoolies with day outings and fun activities – honouring their achievement, their friendships, and the start of a new era.

I know I secretly smiled at the end too – no more darn Book Week fancy dress, sports carnivals, juggling therapy and medical appointments with school commitments and trying to remember if it is an Individual “Learning/Education/ Curriculum” Plan!

We had done it!

By Fiona Lawton Fiona Lawton is National President of the Angelman Syndrome Association Australia and owner and director of Neu Pathways Australia. neupathwaysaustralia.com I SSU E 32 | S P R I N G 2022 9

The Joy to Move Freely As market leaders in special needs equipment in Australia, Astris PME carries an extensive range of devices that have been created to meet the needs and requirements of people who want to improve their everyday lives by getting out and about independently. We can provide solutions that match the needs of people with a disability, and help therapists achieve the best outcomes for every client, in every age bracket. Astris PME have a huge range of trial equipment available so if you would like to make an appointment with one of our Specialist Consultants or enquire about any of the products and services we offer, please call us. We will be happy to help!

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DEALERS AUSTRALIA-WIDE

EXTRA SERVING OF HEART Nestled in Bayside Melbourne, All Things Equal is a café where hope, respect and opportunity are always on the menu.

General manager, Bianca Stern, explains how this life-changing enterprise has become a firm favourite among coffee lovers.

12 SO U RCEKI DS .CO M . AU

EMPLOYMENT

How has it grown?

When we opened our doors, we had five people with disability employed with ATE. Today, we have 25 young adults with disability in award-wage employment with us. We run two cafes, a footy club canteen, a cooking school, and an ice cream cart!

It’s safe to say we have grown very quickly due to the huge demand for what we’re doing in the inclusive employment space.

Tell us about your employees Our staff are the heart of our organisation.

They are hard workers, smart, capable and are thriving in what they do.

We have 50 employees – 25 are neurodiverse. We employ a large range of people with differing abilities, including intellectual disability, downs syndrome, cerebral palsy, autism and ADHD.

What was the inspiration behind All Things Equal (ATE)?

The chair of our board was concerned about his daughter’s employment options when finishing school in 2020. His daughter, who is autistic, loved to bake and being in a kitchen environment, but didn’t have a workplace that could support her to thrive in employment.

United by a vision to see more young people with disability in paid employment opportunities, the board came together and raised some funds, and All Things Equal was established in January, 2021.

Is previous experience necessary?

Most of our staff have never been in paid employment before, so this is often their first real-world opportunity to learn absolutely everything.

ATE sets expectations necessary for anyone to thrive in a real-world environment. We act as a stepping stone towards more mainstream employment which means our staff (my colleagues) have the opportunity to learn, make mistakes, challenge themselves and ultimately, flourish in our environment.

The world of hospitality can be quite tricky. You never know what mood a customer may be in when they walk

through our door or how busy it may get. We feel people learn best through doing, so we provide on-the-job training that can be reflected and acted upon as they’re working. ATE also has a variety of workplace accommodations in place to meet the needs of individualised staff. This ranges from the implementation of visual resources, adapting shift and break times, uniform accessibility and more.

How do you assess what roles will suit people best?

When we first meet with a potential employee, the recipe to employment is in their hands. We ask them what roles they’d be interested in, and what support they may require from ATE to thrive.

The successful applicant will take part in on-the-job training in either front-of-house or back-of-house roles. Through a codesign approach, the employee and ATE work together to determine what roles will be most suitable for the employee.

What do your employees get out of being employed, other than the obvious… a wage!

Our employees are provided with a purposeful opportunity to contribute to society in a meaningful way. To us, this is the most important benefit to providing anyone with employment. Of course, our staff also learn new skills each day, learn to work in a team, meet new people, the importance of showing up to work on time and understanding overall workplace expectations too.

I SSU E 32 | S P R I N G 2022 13

EMPLOYMENT

Meet ATE employee Zac AGE: 36

You pay your staff award rates, why was it important to do that?

Would you encourage other parents to open a business in partnership with their child?

We believe all people should be able to find a self-sustaining purpose in life and maintain a sustainable income, regardless of having a disability or not. All people deserve to be compensated fairly for their work, especially when they add so much value to our workplace!

I’d be dishonest if I said it was easy and seamless all the time. It can be complex, but it is absolutely worth it. You never know, the risk may be worth the reward!

What would you say to other parents who are lying awake at night, wondering what their kids are going to do when they finish school, or who may have already finished?

We like to say, we hope they enter with a smile and leave with an even bigger one. We love that people visit our café because we make good food and coffee.

We don’t want to be tokenistic. However, if customers leave being a little more educated on inclusive employment, or consider being a bit kinder to people of all abilities, we love that too.

----By Rebekah Devlin

We feel you and we understand it’s not easy. Your child is deserving of every opportunity they wish for in life. You are their greatest advocate!

How can parents assist their children and find employers who are inclusive and supportive?

Don’t take no for an answer. Keep knocking on doors, educating local business owners and advocating.

Everything is possible, if we get the right people on board.

What do members of the public say when they first come to the café?

"We hope they enter with a smile and leave with an even bigger one."

KEEN TO CHAT? Reach out to ATE at: hello@allthingsequal.com.au

14 SO U RCEKI DS .CO M . AU

LENGTH OF SERVICE: Since February 2021 ROLE: Back-of-house – helping to cook with the chef, food preparation, coming up with menu items.

WHAT DO YOU LOVE ABOUT YOUR JOB: It’s my first paid job and it makes me feel important.

I enjoy working in the kitchen, I like working in a team and love the staff. It’s helped me to be more independent and to cook food I hadn’t tried before.

It gives me confidence in the kitchen.

PLANS FOR THE FUTURE: I want to be a full-time artist with my own shop.

Special Needs Solutions is now part of ILS Kids

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Extensive Product Portfolio ILS Kids accesses a wide product portfolio, which ensures our recommendations are not limited by access to certain products.

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SCHOOL of

THOUGHT

When your child starts prep, Year 12 feels like an eternity away. But as the years roll on, it’s important to choose a school that prepares your teen for what lies ahead.

O

ne minute they’re heading off in baggy uniforms three sizes too big. Seemingly the next minute, you’re plunged into subject choices, work experience, training programs and employment options.

School is a defining part of your child’s life and it’s vital that you work in partnership with your young adult and their school to create solid pathways for what comes next.

Sydney’s St Edmund’s College, Wahroonga is a Year 7 to 12 coeducational special high school for neurodiverse teenagers and those with a wide range of disabilities including mild to

18 SO U RCEKI DS .CO M . AU

moderate intellectual disability.

Senior program co-ordinator, Jacqui Anderson, says St Edmund’s approach to readying students for transition is multifaceted and includes curriculum, parent support and work experience programs.

Students take part in a mock café and hotel, a mock retail store (they were the very first school to get a mini-Woolworths store on-site, thanks to a parent lobbying the supermarket giant), horticultural activities on the school grounds, office tasks and they run an enterprise to raise money for a charity at Christmas time. Students also visit workplaces.

“We have some great organisations who

support us and are very welcoming when our students visit,” Jacqui says.

In Years 11 and 12, students complete a Life Skills HSC, teaching functional skills and knowledge that will enable students to participate in work and the community.

“Our maths program takes place predominantly in the community and students work on their money skills whilst also developing important skills such as appropriate social interactions and preparing their own belongings to go shopping,” she says.

All students study a Vocational Education and Training (VET) course, in either hospitality or retail services. These mainstream courses have been adapted to students’ individual needs.

“Students still need to demonstrate the same level of competency as a mainstream student, so our talented staff design tasks that allow students to demonstrate their learning when the use of more traditional methods of

EDUCATION

SLES

What are they?

School Leaver Employment Supports (SLES) help young people transition from school to work and are available in the final years of school and directly after leaving school.

assessment − such as a written test − won’t Heatherwood School, which caters work for our students,” Jacqui explains. for secondary students with a mild Each course has a requirement for intellectual disability. students to complete practical hours, which “The school’s focus is learning for is met through a combination of on-site life by providing an education that experiences and work placement. enables young people to grow into “Our hospitality students sell coffee to independent, confident, capable adults, staff on a weekly basis, as well as making fully equipped to make their own way and selling milkshakes to their fellow in the world,” says Lesley Foster, who students. The retail students sell snacks at has the rather impressive job title of recess once a week,” Jacqui says. "director of happiness" and teaching “Generally, in a mainstream school, and learning coach. when students do their VET work “Developing confidence and resilience placements, students are expected to features in every classroom, in every travel to attend theses year level, as the school “We want our placements independently. builds self-esteem and an For many reasons, this attitude of achievement students to dream is not possible for our big. We instil in them and success.” students. Instead, we have As a Registered the confidence that Training Organisation, students do their work they can achieve placements in groups students have the of three or four with a their goals and then opportunity to obtain supporting staff member. nationally-accredited we put in place “External Work certificates in hospitality, practical steps to get agrifoods, retail, active Placements mean students get to practise them there.” volunteering and sport their skills in a real and recreation. workplace. Students always finish these From Year 9, the students work in placements exhausted, but so proud.” the Heatherwood fully-accredited These programs translate into genuine trade kitchen, preparing lunches for life outcomes − they have former students staff and students. who are living independently and Work experience is a feature from Years employed in various industries including 10 to 12 for all students and can lead into hospitality, retail and even one who works an apprenticeship in a trade. One former in a law firm and sets up the boardroom student is currently studying social work for meetings and events. at university.

Also leading the way is Melbourne’s “We know that finishing school can be

Providers who deliver SLES help young people prepare, look for and gain employment.

They provide meaningful, individualised capacity building activities so young people can achieve their employment goals.

While each person’s program will be different, skills targeted can include: • Money handling skills • Time management skills • Communication skills • Discovery activities • Work experience • Job ready skills • Travel skills • Personal development skills These supports typically include: •W ork experience in an inclusive employment environment • Employability and/or vocational specific skills • Other foundation skills that enable engagement in work (for example travel training or money handling).

a scary time for both students and their parents, but if you can work closely with your school, build relationships and set some goals, there’s no stopping what your child can achieve,” Lesley says.

“We want our students to dream big.

We instil in them the confidence that they can achieve their goals and then we put in place practical steps to get them there.”

----By Rebekah Devlin I SSU E 32 | S P R I N G 2022 19

EDUCATION

Jacqui’s tips

THE IMPORTANCE OF WORK EXPERIENCE

EACH CHILD’S EDUCATION SHOULD BE TAILORED AND INDIVIDUAL

“In Year 12, all students go to work experience for half a day each week.

We place students according to their strengths, their interests and also their support needs. Some students go to work experience independently, while others go with staff support.

Work experience is all about students getting a taste of what it’s like to go to work: From dressing appropriately and packing their bag with what they will need, to planning how to get to work, taking directions from a supervisor, interacting appropriately with others in the community, travelling on public transport, task completion and checking their work.

Students generally have two different work experience placements each year.”

For working collaboratively with your school “As a special needs school, we differentiate learning for students from the time they start with us in Year 7. The tasks in each subject and support given is adapted to each student’s needs and ability. By holding meetings with parents, we can discuss specific options to suit their child’s needs.”

WHEN SHOULD CONVERSATIONS START ABOUT LIFE POST-SCHOOL? “We start talking to students about their post-school options during Community and Family Studies in Years 11 and 12.

As part of our CAFS program, students visit venues in the community that will support their wellbeing post-school, such as the gym for physical wellbeing and a local club for their social wellbeing.

We also visit a number of service providers they might attend post-school, including those that will teach them work skills, social programs and further education services. Most of our students will aim for open employment so we place a large emphasis on providers that offer SLES (School Leaver Employment Supports).

In Year 11, we start talking to parents about post-school options and continue this 2 0 SO U RCEKI DS .CO M . AU

support in Year 12. All Year 12 parents meet with our transition planning team to discuss their child’s options and develop a transition plan. We hold a parents’ evening early in Year 12 about the types of supports and options available post-school. We have ex-parents speak about their experiences and we usually have a guest speaker to talk about navigating the NDIS.”

START EARLY “In Year 10, get familiar with the types of options available and put your name on the waiting list for any services that look like they might be a good fit for your child. Some services have very long wait times.

In Year 11, continue to explore the different options, attend information sessions and trial days.

In Year 12, decide on which services you will use and then work on collecting evidence for your NDIS review.

WORK TOGETHER WITH OTHER PARENTS “Speak to parents who have already been through this as well as form a network with other parents going through the same thing. If you are lucky to have a large cohort like the St Edmund’s parents, start a chat group and share ideas. This will be one of your greatest sources of information.

Our families have the advantage of the ‘power of numbers’ with up to 22 graduates a year. We are well-known to many service providers and have a really proactive parent body who come together to organise trial days as a group and talk and share ideas with each other.

We have several examples of groups of parents approaching a service and managing to get a program started, simply due to having enough interested students.

A local community college ran a course on foundation vocational skills specifically catering for a group of St Edmund’s graduates, while another group was able to do similar with a hospitality course through a TAFE.” ----With Rebekah Devlin

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22 SO U RCEKI DS .CO M . AU

I N A S S O C I AT I O N W I T H

Assistance with Social and Community Participation Getting out in the community and making friends is an important part of life for every child and young adult.

And, the NDIS Assistance with Social and Community Participation budget is designed to help.

But what activities and supports are covered and how does it all work? Experienced Leap in! plan manager, Tabitha, answers some of your most frequently asked questions.

What is Assistance with Social and Community Participation?

Assistance with Social and Community Participation (officially called Assistance with Social, Economic and Community Participation) is one of the Core supports budgets. You can use this funding to improve your child or young adult’s ability to participate in community, social and recreational activities.

What can I use this budget to pay for?

Assistance with Social and Community Participation funding is usually used to cover the costs associated with supporting someone to engage in community, social or economic activities. Which means that this budget could assist your child, teen or young adult to participate in group activities, learn new skills, play a sport or attend an event.

This budget can cover a support worker to attend the activity with your child or young adult if it is “reasonable and necessary” but doesn’t generally cover the cost of the activity itself.

Can you provide some examples of activities covered?

Sure! There is a range of activities that the NDIS may cover: • Recreational and sporting activities.

• Other group-based activities such as music lessons or coding classes.

• V isiting the local library or attending an event.

• Building skills to participate in social and community activities.

How do I know if I can use my son’s funds from this budget to pay for a support worker?

Any purchase made with your son’s NDIS

Ask a plan manager!

funds must be “reasonable and necessary”, related to their disability and connected with the goals in their NDIS Plan.

The NDIS will consider if your son needs additional help compared with others the same age because of his disability.

It’s important to remember that as parents usually help their children to get to and from social and recreational activities, the NDIS is unlikely to cover transport costs. Also, the NDIS will not usually fund support for a young child to attend or participate in social or recreational activities where a parent or carer would usually be expected to stay and support their child.

What types of assistance can a support worker provide?

Assistance with Social and Community Participation can fund a support worker to provide communication support (including Auslan and interpreting) or assistance with completing activities.

It can also cover personal supports such as helping your child or teenager use the bathroom or eat if more assistance is needed for such tasks due to their disability.

Can I use NDIS funds for a support worker to accompany my daughter to a museum or other ticketed event?

Yes, you may be able to use NDIS funds for a support worker to accompany your daughter to a museum or other paid, ticketed event.

Note that the NDIS will not cover the cost of entry fees for your daughter or their support worker.

What are some things you can’t pay for with Assistance with Social and Community Participation funding?

Generally, you can’t use NDIS funds to buy things everyone has to pay for including concert tickets, entry fees, class fees, uniforms, memberships, meals, coaching and general equipment costs.

However, if it is a “reasonable and necessary” cost that relates to your child’s disability, and is closely connected to the goals in their NDIS Plan, you may be able to use your funds to pay for some costs associated with participating in social and community activities.

Tabitha knows!

Help! My child has run out of Assistance with Social and Community Participation funds but needs a support worker over the next few months.

The good news is that Assistance with Social and Community Participation is a Core support, so it’s flexible! That means you can also pay for a support worker with Assistance with Daily Life or Consumables funding.

There seems to be two community participation budgets with similar names. What’s the difference?

Assistance with Social, Economic and Community Participation funding from the Core budget can be used for a support worker to help your child participate in social, employment and community activities.

Increased Social and Community Participation funding from the Capacity Building budget is used for development and training to build independence and help your child access the community. Examples include peer support, public transport training and funds to try out new activities connected with the goals in their NDIS Plan.

Leap in! is Australia’s leading NDIS plan manager and proudly not-for-profit.

Get support to manage your child’s NDIS Plan and tailored advice from a team experienced in the NDIS and the Early Childhood Approach. Call 1300 05 78 78 or email crew@leapin.com.au to learn more.

DO YOU HAVE A QUESTION YOU’D LIKE US TO ANSWER IN THE NEXT EDITION OF SOURCE KIDS? WE’D LOVE TO HEAR FROM YOU. SEND YOUR QUESTION TO MYSTORY@LEAPIN.COM.AU I SSU E 32 | S P R I N G 2022 23

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MOVING OUT

Spreading

YOUR WINGS

Moving out of home is a huge milestone in any young person’s life. Here are some practical steps to prepare the whole family for this important rite of passage.

E

very teenager is different − some can’t wait to fly the coop, and others want to stay at home for as long as possible.

Moving out of home is a huge moment for not just your child, but the entire family unit.

While it might feel like a daunting prospect, especially when considering additional challenges such as sourcing appropriate housing and concerns about finding attuned and professional support workers, with the right support and preparation, it can happen.

Moving out is not the first, and it won’t be the last, challenge your child encounters… but think about all your child has achieved so far!

Planning is key Supporting your young adult to move into their own home begins with careful planning. As with all major life events, we tend to think that preparation is largely practical but rather, it’s multi-dimensional: practical, emotional and mental.

Practical planning considerations include: • Location • Accessibility • Affordability • Type of accommodation • L iving arrangements – alone or with others?

I SSU E 32 | S P R I N G 2022 2 5

S P I T

MOVING OUT

In addition to preparing your young adult to move out, don’t forget to prepare yourself. Often our sense of identity is tied up in caring for our loved ones. When this changes, people can feel a sense of loss.

Mental and emotional preparations include: • Are they ready?

• Do they have the skills to care for themselves?

• How much support do they really need to live safe and well?

• How can they gain independence and feel safe when away from the family?

• How dependent are they on emotional support from others?

Before taking the plunge, you can support your child to get ready by creating a living environment outside of the family home: •G oing on holiday or trips – this can be done with support from NDIS core supports, if you have a goal in your plan to develop capacity for independence.

•E ngage with a mentor to undertake activities out of the home or focus on selfcare and household management.

•T rial Short Term Accommodation (STA). See how much support your child needs to manage outside your home environment.

•C onsider transport that will work best for your child when engaging with the community. Do they need to use public transport? And if so, do they need support to do this?

Explore your networks Speak to others who have supported a loved one to undergo this transition.

• Where did they begin?

• W ho do they recommend as a provider of choice and why?

• How did they prepare?

• What have they learnt along the way?

Don’t forget to plan for after the big move After all, the transition into independence is dynamic and doesn’t stop once the 2 6 SO U RCEKI DS .CO M . AU

moving boxes have been unpacked.

It’s important to make plans to look forward to, such as when you will meet next, frequency and where you will meet.

This will change over time as you all get used to your “new normal”.

By meeting regularly, you can celebrate successes together and support each other with this time of change. Remember, it’s a big adjustment for everyone.

Timing Start early. In their early teenage years, aim to build connections with people outside of the family. Foster participation in groups, outings and trips. This will build on their independence, while also giving you oversight and the ability to coach them along the way. Learning to interact with people from all walks of life is essential for a successful transition towards independent living. Paid staff and support workers can provide practical support during the big move, but support in relation to attitudes, sharing and respect take time to develop and learn.

For the appropriate level of accommodation and staff funding, goals should be in the NDIS plan at least one year prior to moving out of home. During this year of preparation, NDIS funding for assessments regarding your adult child’s capacity and support needs may be an option. Don’t be afraid to meet with different providers to explore what accommodation and support can be provided for your unique requirements.

A Support Coordinator is a great resource.

They can arrange for you to meet and connect with providers and other people on this journey.

They can ask the difficult questions and may have more knowledge to find out what you need to know. If you don’t already have Support Coordination funding in your plan, you will need to request this at your plan review.

If living independently is your adult child’s goal, then it’s a good idea to have this recorded in your NDIS plan as you may be able to access NDIS funding to assist with your search for accommodation.

If you don’t know anyone that has gone through this process, there are associations you can connect with.

Baptist Care SA is a registered NDIS provider supporting South Australians to get the most out of their NDIS plan. baptistcaresa.org.au/service/ disability-ndis

Tristan's story

JOURNEY TO INDEPENDENCE Moving out of home was a carefully planned, combined effort between Tristan, his family and Baptist Care SA.

washing there,” Tristan explains.

Tristan is now proudly living

workers, Ketan and Papi,

in his own home with the

devouring fluffy pancakes at

assistance of support workers.

The Pancake Kitchen or taking

He takes great joy in being

He is up and ready each day at 6am and in between helping with the household chores, you will find him with his support

in the scenery on the Murray

self-sufficient, enjoying the

Paddle Boat. He is also a diehard

responsibility of maintaining

Geelong AFL fan.

a home and taking care of his

Tristan is now also using

health and wellbeing. He even

public transport, which is

likes taking out the garbage

something he really enjoys. And

each Monday morning!

his confidence is growing every

He is happy and his sense

day – he’s learning to budget

of accomplishment and

and use his money by doing his

independence has flourished

banking and shopping.

since the big move.

“I do my own washing. I go to

“I get to spend it on nice things,” he says.

the laundromat and do my own

Accommodation and support

SIL AND SDA - WHAT'S THE DIFFERENCE?

Supported Independent Living (SIL) is the NDIS funding that supports people to live

and necessary for your situation.

At June 30, the average annual NDIS

as independently as possible. Specialist

payment for someone receiving SIL supports

Disability Accommodation (SDA) is the

was $340,900.

accommodation/housing in which those services are delivered.

SIL funding is typically for people who

Because SIL tends to be quite a significant amount of money, you will need to really prove how reasonable and necessary it

Sometimes a short stay away from home: • Gives you the chance to try new things.

• C an be a place to make new friends or develop new skills.

• May help to maintain your current living situation by giving your carers a break.

Short Term Accommodation includes

need 24/7 support while living in a shared

is for you - a lot of people do not receive

personal care, accommodation, food

home. It exists to cover the cost of the

SIL funding, as it tends to go to people with

and activities.

support staff in the house.

very high needs.

There is a lot of confusion about how SIL

Usually, the NDIS funds up to 28 days of Short Term Accommodation per year, which

funding works because it can be complex and

SHORT TERM ACCOMMODATION

can be used flexibly, meaning you might

can work a bit differently to other parts of the

Short Term Accommodation, including

want to use it in a block of up to 14 days

NDIS. Often the best way to work out what it

respite, is funding for support and

at a time or for one weekend a month.

means for you, is to talk to someone.

accommodation for a short time away from

Endeavour Foundation supports people

your usual home. It covers the cost of your

with disability to live, learn, work and

WHAT KIND OF PLAN WILL YOU NEED?

care in another place for up to 14 days at a

flourish according to their own interests

To receive SIL supports, you need to have the

time. You might have a short stay with other

and priorities. endeavour.com.au

right NDIS funding.

people, or by yourself. It’s often funded when

------

your usual carers aren’t available, or for you

By Rebekah Devlin with Endeavour

to try new things.

Foundation.

As with any NDIS funding, it will come down to whether the supports are reasonable

I SSU E 32 | S P R I N G 2022 27

Football now in THE FRAME It’s known as the World Game or the Beautiful Game and football has become even more inclusive and appealing with the introduction of Frame Football to the country.

T

he team at Dejay Medical have long been supporters of new and innovative ways to promote active inclusion by providing specialised

wheelchairs and supports, handcrafted in New South Wales.

Now its kicking goals with the introduction of Frame Football, an adaptation of football (or soccer as it’s often referred to in Australia).

Dejay’s new Gameframe Kick from Quest is designed to make kicking and ball control easier and enhances the experience of

“We are passionate about ensuring that

the other direction – it was unbelievable

children and young adults who play

football really is for all, and always endeavour

to watch," he says. “Seeing the parents'

the game.

to provide inclusive football opportunities for

smiles, whilst they cheered on their kids

young players,” he says.

during the match was amazing to watch and

Steve Andrew, from Dejay, describes Frame Football as the ideal reverse inclusion sport,

“It has been wonderful to see the impact

similar to wheelchair rugby or basketball –

Frame Football has had on our team of

everyone plays in a frame, meaning an even

committed footballers, who are now

playing field for all involved.

members of our club.

Frame Football is classed as a

something that everyone should be given the opportunity to experience.”

While the social and psychological benefits are clear to see, there are also

“Come and Try sessions are now being

significant physical benefits of playing the

development sport and falls under the

held regularly, with players working on their

game, according to the experts at the NAPA

banner of the IFCPF (International Federation

dribbling using a few different drills, moving

Centre, a paediatric clinic specialising in

of Cerebral Palsy Football) and CPISRA

around the pitch and listening for different

physiotherapy and occupational therapy.

(Cerebral Palsy International Sport and

instructions.

Recreation Association), who are working

“It was fascinating to see some of the kids

“It highlights how they can use their walker as a strength, not as something that

with local sporting bodies to bring the

use their frames to their advantage. One

separates them from their peers,” says NAPA

program to life.

participant, Oscar, was using the frame to

physiotherapist, Joe O’Brien.

Chris Adams, the community football

shield the ball then dribbling at great speeds

manager at the Northern Suburbs Football

and changing direction very quickly. Oscar’s

of the areas we often target and work on

Association and Northern Tigers Football

technique was off the charts. At one point,

during therapy can be incorporated into a

Club, has been involved in the launch and

he rolled the ball backwards, back heeling

fun, functional and inclusive environment.”

says it’s exciting to see the sport growing

it through his own frame and then turning

-----

in popularity.

180-degrees so he could instantly dribble

By Rachel Williams

2 8 SO U RCEKI DS .CO M . AU

“As a physio, it is great to see how so many

ADVERTORIAL

The other BIG SPORTING EVENT heading to QLD From beginners to the elite – frame runners from all around Australia are coming to compete.

W

a frame running charitable organisation.

“I would encourage everyone to get out there and try frame running. It really is so much fun to get out on the track and participate. You don’t have to compete

hile the Olympics are coming

in late 2018 and is working with a wide range

to Queensland in a decade,

of therapists and sporting bodies to grow the

there is a sporting event of

activity nationally.

significance heading to the

promoting the sport with “Now I Can Run”,

if you don’t want to,” Bella says.

“It is a great way to meet other people, exercise and socialise. I just feel fantastic

One of Dejay’s clients is Isabella Auld, who

and free out there running. Everyone is

Sunshine State later this year that’s creating

recently took to the track at the Denmark

very supportive and it’s such an amazing

a big buzz.

Camp and Cup, as one of six Australians

community of runners.”

The inaugural Australasian Frame Running Camp and Cup will be held from September 30 - October 2 at the University of Queensland Sports Athletics Centre.

The event includes a frame running competition from beginner level through to elite, as well as activities including gym work

competing against runners from 16 other countries.

Unfortunately Bella is unable to attend the upcoming Australasian event, but she is

Bella, 20, who was only introduced to the sport last year after a history of swimming, dancing, bike riding and horse riding, was one of the rising stars in Copenhagen.

Gold Coast-based Bella competed in

already planning to attend the next one.

She suggests those wanting a frame runner should try before they buy.

“Get on the track and use them for a while.

Everyone is different in what they like with

outs and high-performance coaching. Connie

three events, coming away with a gold

their seats and chest plates for example, so

Hansen, the inventor of Frame Running, will

medal for the 40 metres and a silver medal

all of this can be changed to suit your needs

be in attendance to present to therapists and

in the 60 metres.

and likes," she says.

families on ideal positioning and the benefits of frame running.

The team at Dejay Medical is gearing up for the event, which will involve competitors

“She met so many other inspiring athletes

-----

and is already planning her trip back next

Dejay Medical is offering to loan frame

year,” Bella’s mum Stacey says.

runners for the Cup and Camp in

“It was the most amazing experience for

Queensland. Those needing a loan can

across a range of ages, including some young

her, especially being with so many other

email therapy@dejay.com.au to secure

children who have aspirations of competing

competitors from across the world.”

equipment.

in the Paralympics on home soil in 2032.

Dejay launched Frame Running in Australia

Bella trains twice a week on the track and one session in the gym and is actively

For more details, visit dejay.com.au/ australasian-camp-and-cup-2022

supporting health and fitness through frame sports Helping you achieve your goals for over 35 years www.dejay.com.au

02 9838 8869

therapy@dejay.com.au I SSU E 32 | S P R I N G 2022 2 9

The Six F-Words for Child Development F

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Specialist Physio joins the GTK team!

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Ashish holds a Master’s degree in Physiotherapy and a Bachelor’s degree in Occupational Therapy from Sydney University. He has worked at a variety of hospitals in Sydney, as well as in the brain injury unit at Liverpool hospital.

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THE EYES HAVE IT

Visual tracking: Nicky Kiparissis explains why it is so important.

F

rom the moment babies are born, they use visual cues to learn about their surroundings. Whilst their vision may start out blurry, as their world looks a little clearer, the faces of parents and siblings and the movement of an overhead swinging mobile are the first things they will track.

This primitive skill will become important as they enter their newfound world in the classroom and the schoolyard: visual tracking to learn, read and write as well as to watch and catch the ball in the playground.

To understand visual tracking, we first need to understand our eyes and the visual system as a whole.

VISION AND SIGHT ARE TWO VERY DIFFERENT THINGS No different to a camera, our eyes are the lens used take the photos − sight. However, our brain needs to process and blend the two images (from both eyes) into one image − vision.

Sight describes what or how small we can see, how well our eyes are able to see fine detail, even from a distance, how well a camera can “zoom”. It is where the well-known terms of “6/6” and “20/20” come from.

Vision is more complicated. It considers

Optometrist v behavioural optometrist – WHAT’S THE DIFFERENCE? A child's vision can have a huge impact on the rest of their lives. Children not only need to see, but they need to interpret the visual information they receive. A behavioural optometrist will not only assess visual acuity, eye movement and the health of the eye, but they will also investigate how a child processes the visual information their brain receives, how the two eyes team together and whether there are any vision-related learning difficulties.

3 4 SO U RCEKI DS .CO M . AU

both how you interpret the information that you see from your sight, as well as how well your eyes work together as a team, including fusing, focusing and tracking.

Vision allows us to create our perception of reality through our sight and to interpret this cohesively in our brain.

It is not uncommon for a behavioural optometrist to find children who have great or “20/20” sight, still have poor vision.

Whilst there is no issue with what they can see, poor visual focus can lead to a frustrated, grumpy, tired child or even be the cause behind children skipping lines or reversing words when reading.

HOW DOES VISUAL TRACKING WORK? Visual tracking relies on eye movement, including “smooth pursuits” to maintain your focus on a moving object and “saccadic eye movements” to allow us to switch from one object to another. Both types of movements are required to allow

VISION Is this what your child sees?

Most Most children children have have no no idea idea how how they they are are supposed supposed to to see. see. So So when when words words look look like like this, this, they they assume assume everyone everyone sees sees the the same same way way they they do. do. Imagine Imagine how how frustrating frustrating that that would would be. be.

Looking for the signs Signs your child may have poor vision and a visual tracking problem. Do they: Look at your face?

Track you and your family around the room?

Stare at lights?

The concepts of vision and sight are two very different things. for a clear image to be formed in the mind.

Visual tracking is a key feature in learning to read, write and interpret the environment or the task at hand.

A problem in visual tracking can often go unnoticed, however given the visual system is responsible for 80 per cent of what we learn, it can have a huge impact on a child’s learning world.

When a child has to forcibly control their visual tracking to avoid seeing double or blurry, then it's this effort that causes fatigue and behavioural changes.

WHAT TO LOOK OUT FOR Visual tracking difficulties can be subtle and manifest as an aversion towards reading, trouble moving up from easy readers to smaller print chapter books or even anxiety, headaches or tummy aches preceding these tasks.

For autistic children, or those with sensory issues, these internal sensations can be intensified, leading to emotional dysregulation.

Amplified frustration due to sensory input or trying too hard is often misunderstood and overlooked by many.

It is also not uncommon for children to have separation anxiety and complain of feeling sick.

In learning, it can appear as frustration and avoidance of reading and learning, skipping or re-reading lines, omitting or confusing words when reading, poor comprehension when reading, homework taking much longer than it should, short attention span with reading and school work, headaches, blurry vision and importantly, learning delays.

Physical and emotional behaviours can include clumsiness, frustration, anger, emotionally “needy”, tired and less alert, working too close to something, frowning and finger tracking.

VISUAL PROBLEMS ARE MORE COMMON IN CHILDREN WITH DISABILITIES Statistics indicate that visual problems are more prevalent in children living with disabilities. These visual problems can include strabismus (lazy or turned in eyes), retinal atrophies and structural eye anomalies such as congenital cataracts.

Although assessment can be more challenging, early detection and diagnosis is highly beneficial for children with disabilities.

Identifying these potential additional barriers to learning and development can be crucial, and often be the difference between a child who is keen to learn, versus an angry and frustrated child who just cannot cope with this visual stress.

Turn their head to the side to see?

Close one eye?

Avoid reading?

Skip lines when reading?

Read the same line again?

Get close to the page?

Easily distracted?

Suffer from anxiety or headaches?

Not want to go to school?

Get car sick?

Clever at everything but school?

It is important for children living with disabilities to have regular visits with an experienced behavioural optometrist.

As they specialise in this field, a behavioural optometrist will be able to cater an eye exam to your child’s skill on the day, in the form of games, ensuring that their visual acuity and tracking, as well as ocular health, and functional vision are assessed or observed.

These optometrists can, with the assistance of other allied health professionals, provide a comprehensive plan to improve your child’s vision and learning.

Remember, it's never too early to get your child's eyes tested, especially if they have already started school without one.

Nicky Kiparissis is a behavioural and developmental optometrist with 30 years of experience in private practice and owner of Kiddies Eye Care. kiddieseyecare.com.au I SSU E 32 | S P R I N G 2022 35

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Rare isn’t that rare Despite widespread medical advances, children with a rare disease often never receive a diagnosis.

Syndromes Without A Name is there to offer help.

3 8 SO U RCEKI DS .CO M . AU

R

ight now, there are about 350,000 children across the country with an undiagnosed or rare genetic condition.

And of the roughly 300,000 babies born in Australia each year, it is estimated that 25,000 are born with a rare genetic condition.

This equates to a staggering one in 12 who are born with a rare genetic condition.

Tragically, around 30 per cent of children born with a rare and/or undiagnosed genetic condition will pass away before their fifth birthday.

Syndromes Without A Name (SWAN) Australia is the only organisation that

provides information, support, connection and systemic advocacy for these families.

Undiagnosed Children’s Awareness Day is Sunday, October 23, and this year, the national peak not-for-profit organisation is celebrating its 10th birthday – a milestone that is certainly cause for celebration across the country.

“Rare isn’t that rare,” says Professor Sue White, clinical geneticist at not-for-profit specialist laboratory, Victorian Clinical Genetics Services.

“Collectively, the impact of rare diseases is similar to the impact of diabetes.”

It is estimated that 2 million Australians are living with a rare disease, many of which have no cure or treatments available.

RARE DISEASES

pass the condition on to our child?’.

‘Is there a cure or treatment?’. Or ‘Is it a progressive condition?’,” she says.

The lack of diagnosis also limits a family’s access to support groups, information about what the future holds, reproductive choices, and options for clinical trials.

RECEIVING A DIAGNOSIS

“Currently, we understand the disease associations of only around 5000 of our 20,000 genes.”

SOMETIMES THERE ARE NO ANSWERS Sadly, of the children who present to a geneticist, only 30-50 per cent will receive a diagnosis. This is an especially difficult figure to take in if the child has a progressive or life-limiting condition.

Professor White says while there have been substantial leaps forward in genetic testing, there is still so much that is unknown.

“One of the reasons it is so difficult to diagnose children with rare genetic conditions is that there are many ways DNA can be altered, and even the best and newest tests cannot detect all DNA alterations,” she says.

“Currently, we understand the disease associations of only around 5000 of our 20,000 genes, which means that we have a lot still to learn about what the consequences are if there is change in one of the 15,000 genes we don’t know much about.

“Sometimes children have more than one genetic condition, making them very difficult to diagnose as they may have a blend of different symptoms.”

And not all children with unexplained health or developmental issues will have a genetic cause.

“It can be very difficult for families to comprehend that despite access to cutting-edge technologies, sometimes the answer can’t be found,” she says.

SWAN chief executive officer, Heather Renton, says “not knowing” can weigh heavily on families.

“We know it can be incredibly isolating and frightening when you don’t know why your child is not developing the way you expect. Not having a diagnosis raises a lot of questions and concerns. It can be an anxious time, and many parents would have many questions such as ‘Will my child ever walk or talk?’. ‘Will their seizures ever be under control?’. ‘Did we

When families do finally get a diagnosis, the emotions are varied, and numerous.

“It can be overwhelming, a sense of relief or heartbreaking,” Heather says. “A diagnosis can take time to process. However, it can lead to a better understanding of your child, provide opportunities to access better treatments and targeted therapies, and can give you a glimpse of what the future might hold.

“You may be able to contribute to research or learn from existing research.

One of the biggest benefits can be the connection and support you can gain from others who have children with the same genetic condition.”

SWAN supports researchers on many projects in the hope it leads to better outcomes and that they too can advocate for families around treatments and clinical trials. SWAN engages in systemic advocacy and provides a public voice for families, campaigning on a range of issues, politically, and within the health, disability and education settings so that there are improved pathways to enable children to thrive. They also advocate for improved and equitable access to genetic/genomic testing, so that more families can have the opportunity to get a diagnosis for their child.

REDUCING THE ISOLATION Nobody understands the concerns parents face better than another SWAN family experiencing similar circumstances. The organisation aims to decrease the isolation and emotional strain of raising a child with health conditions and/or disability by helping families connect with one another for support.

SWAN regularly searches their database to match families and carers I SSU E 32 | S P R I N G 2022 39

RARE DISEASES

Rare disease

THE FACTS • Diseases are considered rare when they affect fewer than 1 in 2000 people.

• 70-80 per cent of rare diseases are genetic.

who have children with the same varies across Australia due to funding or similar conditions, or those who differences from state to state and within care for a child of a similar age and individual hospitals. live in a similar region. In addition While some children are eligible for to emotional support, families often Medicare-base funding for genomic share information, coping strategies, tests, uptake of paediatricians ordering medication and therapy experiences, these tests has been slow. There adding to the pool of knowledge on are many reasons for this including these rare conditions. paediatricians becoming familiar with SWAN hosts parent information test ordering processes, awareness of test sessions, peer support events and social options and confidence organising what networking opportunities where families is a complex test. can form lifelong bonds. These include SWAN is currently fundraising face-to-face events such as family $50,000 to employ a genetic counsellor morning teas, virtual events, a siblings to give families long-term support group and a bereaved throughout the many parents group. months and years it may “Rare isn’t that With around 60 per take to get a full and rare. Collectively, accurate diagnosis. The cent of children with an undiagnosed or the impact of rare counsellor would provide rare disease admitted diseases is similar continuity, support and to hospital at least understanding throughout to the impact of once a year, SWAN this process. diabetes.” also supports families The organisation through their hospital is also campaigning care packs program. The program is for equal access to healthcare and designed to make hospital stays a little disability supports and better holistic more comfortable for families and is a care coordination. It wants greater practical way to show that people care recognition of the health, economic, in what is often a very stressful time. psychosocial challenges they face, and increased research and funding SWAN’S WISHLIST into undiagnosed and rare genetic Heather says SWAN families want conditions. equal access to genetic and genomic SWAN - swanaus.org.au tests, leading to an accurate diagnosis VCGS - vcgs.org.au for their child, with faster turnaround times. Currently, access to genomic tests

By Rebekah Devlin and Kelly Wilton 4 0 SO U RCEKI DS .CO M . AU

• There are more than 7000 rare diseases that collectively affect more people than diabetes.

• There are approximately 300 million people living with a rare disease (approximately five per cent of the world’s population.

• Collectively, the number of people living with a rare disease is equivalent to the population of the United States of America – 330 million people.

• It is estimated that two million Australians are living with a rare disease.

• Around 30 per cent of children born with a rare and/ or undiagnosed genetic condition will pass away before their fifth birthday.

• Only around 30-50 per cent of families will receive a diagnosis in their child’s lifetime. The average time to a diagnosis is five to nine years.

• Around 30 per cent of families seeking a diagnosis see between six and 20 doctors before getting the correct diagnosis.

• Around 40 per cent of people living with rare diseases are misdiagnosed at least once.

• Rare diseases can be debilitating, chronic, progressive, degenerative and life-limiting in nature. They can affect patients differently, even within the same rare disease.

• Many rare diseases have no cure or treatments available.

• Children and families living with an undiagnosed or rare disease often experience multiple challenges, from health to psychological and lack of social (including disability) supports and economic impacts, not to mention diagnostic delays.

• There is often limited knowledge about rare diseases among health professionals, therapists and the National Disability Insurance Scheme (NDIS).

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Navigating the T

hese days, technology is part of our everyday lives. From video streaming to social media and gaming, most kids have been exposed in one way or another, often from an early age.

Spending time online can be a fun and sociable experience. Gaming, in particular, can encourage the development of important skills such as teamwork and problem solving.

This is all great, but as our kids spend more and more time online, many parents are asking, "how can I keep them safe?"

Gaming expert Jessica Rowlings from Next Level Collaboration says online gaming can be a fantastic opportunity for children to form friendships through communities that have a shared interest.

Next Level is focussed on helping to keep autistic children safe online, but Jessica (who is herself autistic) says the same principles apply to kids across the board.

“Gaming online can be a really positive experience. Being aware of online safety helps support young people to not only continue positive gaming, but also build social connections with others based on mutual interests,” she says.

4 4 SO U RCEKI DS .CO M . AU

MINEFIELD

Online gaming opens a world of opportunities for your child, but parents need to be switched on to keep them safe

WHAT ARE THE RISKS OF ONLINE GAMING?

PLAYING WITH STRANGERS

While there are many benefits to online gaming for children and young people, it’s important to be aware of some of the risks that they might encounter while gaming online and how to overcome these.

Gaming can provide a sense of escaping reality, and the social aspect of some games can help kids to feel as though they are part of a community.

This is all really positive, however, without the right guidance and parameters, they may be exposed to risks such as in-game bullying or even online grooming.

Online gaming opens up a world of possibilities in terms of social interaction. Put simply, games are much more fun when you have someone else to play with!

Gaming online with “reallife” friends can, and should, be encouraged. But parents must be aware that this can easily lead to kids playing online with people they don’t know.

Helpful hint: Check the settings on your child’s game. Most games have privacy settings which ensure they are only able to connect and interact with known users. This means that whilst they may be in a “world” with many other people, they are only able to “chat” and interact with their friends.

Helpful hint: Don’t allow your child to include any information that could be used to identify them (like their real name or age) in anything that is publicly viewable. One example of this is their screen name, which can be seen by everyone playing the game.

“Without the right guidance and parameters, they may be exposed to risks such as in-game bullying or even online grooming.”

CYBER SAFETY

5 tips for online safety EDUCATION IS KEY

CYBER BULLYING Despite the many social benefits of gaming, kids can also encounter risks such as online bullying.

While bullying and harassment can sometimes happen online, the key is to open the lines of communication so you can address it with your child.

Helpful hint: Talk with your kids and prepare them for the kinds of negative “bullying” behaviour that they may experience online. Importantly, make sure they know they can come to you if they are being harassed.

VIRUSES AND MALWARE Some games may encourage kids to download free “cheats”. It’s imperative to make sure that kids know the risks and impacts that cheating can have when playing online with others, or by themselves.

Helpful hint: Teach kids not to open links or downloads they receive, no matter the origin. This might be a virus or even an attempt to steal personal information.

Helpful hint: Make sure you have reliable antivirus software installed on all family devices (even if the kids think this might slow down their game).

To keep your kids safe online, it’s important to educate them about healthy gaming habits and teach them strategies to implement those habits in a positive way. It’s also important to educate yourself.

Jim Mullan, CEO of leading autism organisation Amaze, says autistic children and young people may be particularly vulnerable online because they are typically more trusting, less deceptive and can have difficulty interpreting metaphors, sarcasm and indirect language.

“Gaming online can be great, as long as it’s safe," he says. "At Amaze, we’re keen to help families keep their autistic kids safe when online. That’s why we developed a series of informative webinars.

The webinars are free and, although they focus on autistic kids, are available to everyone."

The webinars, designed to support young autistic people with healthy online video gaming, were made possible through funding from the Federal Government’s eSafety Commission.

The next Amaze gaming webinar will be held on September 10.

Hosted by Jess Rowlings and Dr Matthew Harrison from Next Level Collaboration, it focuses on the benefits of online gaming in developing skills and knowledge in social capacity, collaboration and positive autistic identity.

To listen to recent webinars or register for the next one, visit amaze.org.au/news-and-events/ events/esafety-webinars

By Rebekah Devlin

1 2 3 4 5

Don’t include any information that could be used to identify you (like your real name or age) in anything that is publicly viewable. One example of this is your screen name, which can be seen by everyone playing the game.

Learn about the privacy features in your game or platform and adjust them to limit who can see your details, or contact you.

Most settings have an option to be accessible to your friends only.

Learn where and how to use block and report features.

Most online games allow players to block other users and report inappropriate behaviour to a moderation team. You can also report online abuse, bullying or harm to Australia’s independent regulator for online safety, the Office of the eSafety Commission.

Don’t click on links or download files from other users. This is a common method for installing viruses or malware on computers, or attempts to steal your personal information.

For parents, take time to learn about the game and understand how it works.

A great way of doing this is to have a gaming session with your child where they teach you how to play!

I SSU E 32 | S P R I N G 2022 4 5

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Autism DIFFERENCES NOT DEFICITS

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AUTISM

Clem Bastow was diagnosed as autistic at the age of 36.

The author of Late Bloomer explains why we need to stop viewing autism as something to be “fixed”.

IMAGE: KRISTOFFER PAULSEN

W

hen I sought diagnosis for Autism Spectrum Disorder in 2018, I didn’t have much in the way of a “positive outlook” when it came to the experiences that had led to that point. I was looking to understand problems I was having; to explain certain difficulties and challenges.

Though my consulting clinician was kind − and made a habit of referring to “Autism Spectrum Condition” − I couldn’t escape the feeling that the broader context was one of disorder. The “homework” set as part of my assessment − a variety of tests to fill out, with room for notes and comments from me − focused on things that I was unable to do, or things that I did in an unusual or problematic way.

Did I have problems making friends? Was I obsessed with patterns? It was as though someone had switched the old Bing Crosby lyrics around: “You gotta accentuate the negative, eliminate the positive”.

Though I didn’t realise it at the time, this was autism as viewed through a lens of deficit. There were no questions about what my unique talents were, or whether I could sink weeks on end into topics that interested me, or whether I was unusually good at mimicking those around me in order to fit in.

The deficit model is likely one that’s very familiar to anyone who has either been diagnosed as autistic themselves, or watched a child or loved one undergo the same processes. You need look only at the US Centers for Disease Control’s “Learn The Signs. Act Early” program, the very title of which seems to treat autism as something to snuff out fast, like a stroke or a precancerous mole.

It is true that there are many aspects of autistic experience that are challenging, particularly for those autistic people who have complex communication needs or are multiply disabled. But so much of this idea

of deficit is tied to how difficult autism is for everyone around the autistic person.

Nick Hodge, Professor of Inclusive Practice at Sheffield Hallam University, has written insightfully about the issue inherent in viewing autism solely in terms of deficit, and framing autistic behaviour as “problematic”. “Thinking of autism in this way,” he wrote in 2018, “has engendered a multi-million pound industry that depends on selling the idea that autistic children are in desperate need of a cure.”

Imagine, instead, a view of autism that recognises the challenges it can present, and aims to support the autistic individual, but which also considers how the world at large plays into those “problem”

“Imagine a world in which autistic experience is uplifted: where it’s not “naughty” to flap our hands or spin on the spot, and where it’s fine to express a preference for certain foods, sounds or sights.” behaviours. This is, essentially, the social model of disability: the idea that societal barriers to engagement are as disabling as physical, intellectual or neurological conditions. Imagine a world in which autistic experience is uplifted: where it’s not “naughty” to flap our hands or spin on the spot, and where it’s fine to express a preference for certain foods, sounds or sights.

Why do we continue to insist on spoken language being the “best” or only way to communicate? Nonspeaking autistic advocates like Tim Chan write eloquently about the low expectations society places upon them, and the reticence many show

in offering accommodations to autistic people with complex needs. Why do we place such a high premium on things like eye contact, or social niceties, at such great emotional cost to the autistic individual?

As I have worked through my grief at not having had the self-knowledge of diagnosis earlier in life, I have come to foster a tightly-held sense of autistic pride.

In making friends and collaborating with other autistic people, I celebrate the fact that autism is not just a “condition” but also a community with its own unique culture. Reframing our understanding of autism is not about throwing our hands in the air and pretending every day is a walk in the park, but rather a call to pause and think about how differently we might understand these so-called problem behaviours. I was lucky, in a way, to not know I was autistic as a kid: my parents accepted me wholly, challenges and talents. What I wish is for every autistic child to be similarly supported, on their terms.

As the pioneering autistic activist Jim Sinclair wrote way back in 1993: “This is an alien child who landed in my life by accident... It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it. If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.”

Late Bloomer by Clem Bastow published by Hardie Grant Books RRP $34.99 I SSU E 32 | S P R I N G 2022 51

INCLUSIVE PLAY

It’s time TO PLAY!

Spring is in the air and it’s time to get out and about to explore the many inclusive play areas in your local neighbourhood.

WHAT MAKES A GOOD INCLUSIVE PLAY SPACE? The great thing about all abilities playgrounds is they are designed for children with a variety of disabilities, sensory issues and more, so everyone can enjoy a play space together.

A truly inclusive playground will offer a range of features including access, equipment design, ground cover, fencing, shelter and accessible toilets. Most local councils have an area on their website that list such community spaces.

Livvi’s Places - Touched By Olivia Foundation The Touched By Olivia Foundation was created in 2016 to honour John and Justine Perkins’ daughter, Olivia, who passed away at just eight months old. Touched

by Olivia has changed the lives of many by connecting families through play with the creation of Livvi’s Place National Network of Inclusive Playspaces. There are 30 Livvi’s Places across Australia. touchedbyolivia.com.au

We Rock The Spectrum

Preston, VIC & Wollongong, NSW An indoor play space designed for children to play freely on suitable sensory equipment. Parents can connect with other families who are understanding and traveling on a similar path. The centre also offers therapy, school holiday programs and various activities like sensory-friendly arts and crafts to keep kids happy. werockthespectrumaustralia.com

My Puzzle House

Pakenham, VIC A place where all ages and abilities can come to play and develop social skills.

Teen night is run on the first Friday of every month. Group activities like dancing, limbo and wall art are included in a safe and secure environment. mypuzzlehouse.com.au

Shine Shed, All Abilities Play Centre

Campbelltown, NSW A sensory play experience designed to meet the needs of children, teens and young adults with disability. It has a variety of sensory spaces and equipment to keep kids engaged. Shine Shed also manufactures sensory walls and can create custom designs for home, therapy and schools. shineshed.com.au

Share My Ability

Jamisontown, NSW The all-ages sensory activity centre has something for everyone − from art sessions to sensory play. The art sensory sessions have been developed by a diversional therapist and provide a range of sensory 52 SO U RCEKI DS .CO M . AU

experiences that build on each child’s sense of self expression − releasing stress, anxiety and communicating in a way that encourages individual creativity.

There is also a magical new sensory room to enjoy as well. sharemyability.org.au

Sensory and Messy Play

Brisbane, QLD While there isn’t a dedicated space such as Shine Shed or WRTS in Brisbane, there are plenty of sensory and messy play activities. These sessions are run across various groups across the SEQ region via playgroups and community groups. The sessions involve “stations” with a variety of sensory elements like shaving foam, kinetic sand, leaves and shells to encourage children to engage in messy sensory play.

Indoor sensory gyms & play spaces Indoor sensory gyms and play spaces are dedicated centres designed for the specific needs of children with disabilities, additional needs and sensory requirements. Soft mats, flying foxes, climbing walls, chill out zones – they have it all to suit all abilities!

Sensory play is beneficial in many ways, helping build nerve connections in the brain’s pathways.

Sensory play supports language development,

Our Sensory Space

Moffat Beach, Sunshine Coast, QLD Created by the parents of an autistic child, this is a purpose-built play space for all kids, including neurodiverse children and those with disabilities. It features a soft play gym as well as a chill out sensory room and an activity room full of dress ups, puzzles and imaginative play equipment. There’s a barista on-site and they even do birthday parties. oursensoryspace.com.au

WOW Sensory Centre

Morphett Vale and Tusmore, SA The WOW Sensory Centre is home to Baby Sensory and Toddler Sense, weekly classes and activities for babies and toddlers which assist brain development.

The unique and award-winning sensory classes are for children from birth to

cognitive growth, fine and gross motor skills, problem solving skills and social interaction.

four years and include everything from lightshows and bubbles to puppets, messy play, music and movement.

It’s also a great opportunity to meet other parents and make friends. thewowsensorycentre.com.au

Rocky Bay, Sensory Rooms

Mosman Park, Nollamara, Duncraig, WA Rocky Bay’s Sensory Rooms are specially designed to increase sensory stimulation, enabling people with disability to interact

with, and control, their environment in a gentle and relaxing way. The rooms provide a new and different place to spend time, encouraging activity with a range of equipment including bubble tube with remote controls, vibro acoustic bean bag, solar projector and fibre optic lighting. Most of the equipment can be used by either standard control or colour coordinated paddle switches. rockybay.org.au

By Kelly Wilton I SSU E 32 | S P R I N G 2022 53

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COMING OF AGE

Untangling the paperwork trail If there’s one thing kids come with, it’s paperwork! And when they become young adults, there’s even more. But never fear, here is your cheat sheet.

S

weet 16: Ah, the joys of friends, first loves, parties, school, further study, career choices and living options!

Our kids deserve to have all the options and access to the above, even if it means thinking outside the box to make it work for them.

It’s fair to say that as a parent of a child with any disability, it can be daunting thinking about our kids getting older.

The trajectory is somewhat different and therefore unknown to many of us who are yet to walk this path.

However, there are a few things that can help you prepare for this time, so you can enjoy and celebrate this beautiful milestone together with your child, with as much preparedness as you can possibly have.

Our friends at Association for Children with a Disability (ACD) have put together the following tips to help you through this part of your teen’s development.

WHEN TEENS TURN 14 A few things to keep in mind is when your child turns 14, the services and supports you use can change.

• Medicare: Once a child turns 14, families are no longer able to access a 5 6 SO U RCEKI DS .CO M . AU

child’s Medicare claims history. You will need to help your child set up a MyGov account so they can access their claims history and their immunisation record.

• They can also open their own bank account.

WHEN TEENS TURN 15 At 15, your child can apply for their own Medicare card. They can also apply for a Tax File Number

WHEN TEENS TURN 16 Once your child turns 16, your Centrelink payments may change and there maybe new options for your child. You will need to look at the eligibility criteria to see what suits your child and family circumstances.

The application process is quite involved, so allow plenty of time.

WHAT DO I NEED TO PREPARE? You will need to provide copies of supporting documents such as your child’s birth certificate, Medicare card, school reports, medical reports, bank statements, tax file numbers and set up a bank account in your child’s name. Keep a copy of all completed forms and documents.

You may need to become a nominee so you can continue to assist your teen with dealing with Centrelink. servicesaustralia.gov.au/someone-todeal-with-us-your-behalf?

WHAT PAYMENTS MIGHT MY CHILD BE ELIGIBLE FOR?

1. Disability Support Pension (DSP) A payment that assists people with a permanent physical, intellectual or psychiatric condition that stops them from working. servicesaustralia.gov.au/ disability-support-pension Resources to help you and your child understand and apply for the DSP: • DSP & Me: Your Guide to the Disability Support Pension. dsphelp.org.au/applying-for-thedisability-support-pension

2. Pensioner Education Supplement A payment that assists with the costs of full or part-time study. servicesaustralia.gov.au/pensionereducation-supplement 3. Education Entry Payment A payment that assists with the costs of returning to study.

HOW TO GUIDE

DO MY OWN PAYMENTS CHANGE ONCE MY CHILD TURNS 16? servicesaustralia.gov.au/who-canget-education-entry-payment?

4. Ex Carer Allowance (child) Health Care Card Assists full-time students with a disability and severe medical condition to access cheaper medicines and some other concessions. The card can be claimed by students in receipt of a Carer Allowance Health Care Card prior to their 16th birthday. servicesaustralia.gov.au/ ex-carer-allowance-child-healthcare-card

5. Mobility Allowance for people who are not eligible for the NDIS This is an income support payment for people with disability aged 16 or over who cannot use public transport without substantial assistance and are required to travel to and from their home for work, study, training or job search.

Your child cannot receive Mobility Allowance if they have an NDIS Plan. servicesaustralia.gov.au/who-canget-mobility-allowance?

Your payments, such as the Carer Payment and Carer Allowance, change when your child turns 16. Centrelink will contact you, and you need to apply for a transfer to keep receiving the payment.

Transfer Carer Payment or Carer Allowance from child to adult When a child in your care is turning 16, you can apply to transfer your Carer Payment or Carer Allowance from a child to an adult. Do this to keep getting paid. servicesaustralia.gov.au/ transfer-carer-payment-or-carerallowance-from-child-to-adult I SSU E 32 | S P R I N G 2022 57

DECISION-MAKING

Supporting your child with

DECISION-MAKING Some children with disability will grow into fully independent decision-makers, while others will need ongoing support to have their say about decisions that affect them.

WHY SHOULD I INCLUDE MY CHILD IN DECISIONMAKING? Including your child in decision-making around planning, setting goals and choosing supports helps them learn how to take the lead as they get older and become more independent. This will also help others to respect and encourage your child’s active role in key decisions that affect their life.

HOW CAN I SUPPORT MY CHILD TO MAKE THEIR OWN DECISIONS? You can encourage a partnership approach to decision-making with your child as they build their capacity to make decisions. Rather than making all the decisions, as parents do for younger children, your role becomes one of guiding and supporting their decision-making as they enter adulthood.

Some examples could include: •H aving your child present and involved in conversations and meetings that concern them.

•U sing your child’s preferred communication methods to gauge their interest in suggestions.

•F inding different ways to gain an insight

into their preferences. For example, using pictures, drawings and observing their body language.

• Communicating directly with your child and encouraging others to do the same.

• Finding ways to determine if your child likes suggestions about what is being discussed.

WHAT IS “DIGNITY OF RISK”?

People learn how to make good decisions by being given the chance to also make bad ones. This is known as “dignity of risk”.

Decision-making skills are something that we learn gradually over time and with practice. You can support your child to understand the positive and negative consequences of different decisions and how to identify and manage risk.

HOW WILL MY CHILD BENEFIT? One of the biggest challenges for parents is adapting as their child becomes a young adult. By teaching them the skills that build independence, you can increase their self-esteem and confidence in their own abilities.

You can start building strong

foundations for your teen by helping them explore what their life might look life after school by: • Future planning.

• School and post-school options.

• I mportance of work experience while at school.

• How you can support your child with volunteering, work or micro-enterprises.

• G etting the right NDIS support for your teen.

• Wellbeing – friendships, behaviour support, communication and mental health.

A further resource you may like to explore is the free online program “Map Your Future”, which allows young people to work at their own pace, exploring topics such as self care, setting goals and getting the right support to achieve your goals. yacvic.org.au/ydas/resources-andtraining/map-your-future

ACD runs more than 100 online and face-to-face workshops across Victoria each year. All facilitators are parents of children with disability and their workshops enable families to connect, learn new skills and get up-to-date information. They regularly run a Teens and beyond workshop. For more information, head to acd.org.au/workshops-and-peer-support 5 8 SO U RCEKI DS .CO M . AU

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I N A S S O C I AT I O N W I T H

Protecting your child’s

Future

It’s a scenario none of us likes to think about, but estate planning is imperative to ensure your child is cared for and protected says senior estate planning solicitor, Susan Bonnici. And it’s not as complicated as you might think.

"W

hat will happen to my child after I am gone or when I am no longer able to care for them?"

It’s the thought that has kept many of us awake at night. Will our children be OK financially, and who will look after them?

As an estate planning solicitor by trade, and the mother of a daughter with a rare chromosome deletion called PhelanMcDermid syndrome, I can relate to these feelings all too well.

Only about half of Australian adults have a valid Will. As the parents of a child living with disability, it is vital that families put the right plans in place to ensure that these children are cared for and protected for the rest of their lives.

MAKE A START – HOWEVER SMALL I know first-hand that having a child with a disability means that adding another task to your to-do list can be overwhelming.

Not only that, the very idea of what life would be like if you weren’t around to do all those things for your child is often simply unbearable. It’s completely understandable that people put their estate planning in the “too hard basket”.

A good way to make a start is to put down some key headings – things such as accommodation needs, activities, social and family connections, their doctors and therapists, medication lists, their school, and their level of independence.

I personally approached it this way – if I was in an accident and a friend or family member had to pick up the care of my daughter, what information would they need to know about her life to ensure they could look after her properly? I developed a Care Plan which set out everything.

In addition to her medical information, I also included her likes and dislikes and what will calm her down if she’s upset.

My daughter is unable to communicate this information, so it’s important to

me that I have it all written down.

Obviously, a Care Plan will need to be updated over time as the child’s needs and circumstances change, but just try to focus on the here and now when getting started.

The next step is to think about the legal considerations – how your assets will be dealt with and the care of your child and children will be handled legally if you’re no longer around. I strongly recommend working with a specialist estate planning lawyer who can provide you with tailored advice. Every family is different, so the best legal solution for you will depend upon your assets, your family situation, the needs of the person with disability, and what their future looks like.

YOUR WILL A Will is your way of guaranteeing that your assets are distributed in accordance with your wishes when you pass away. It’s also your way of ensuring that people you trust are appointed to look after I SSU E 32 | S P R I N G 2022 61

ESTATE PLANNING

your children (if they are under 18), as well as nominating responsible people to distribute the assets (Executor) and manage any trusts created by the Will (Trustee).

SETTING UP A TRUST Trusts are frequently used to protect assets for the ongoing benefit of someone who is not able to manage the assets themselves – this can be because they are children (minors), or people with ongoing health or lifestyle difficulties, including people with disabilities.

In simple terms, a trust is a legal structure where a person or a company, called the trustee, effectively owns assets for the benefit of one or more people, called the beneficiaries.

If you’ve set up your Will in this way, any inheritance your child is entitled to will transfer into their trust and not directly to them. The Will specifies who will be the trustee, and this person or organisation is legally obliged to manage the trust in the best interests of the beneficiary. By using this approach, parents and carers can be assured that their child’s financial affairs will be taken care of – but deciding whom you appoint as a trustee also requires very careful thought.

CHOOSING A TRUSTEE AND CONSIDERING A COTRUSTEE ARRANGEMENT Some of the factors to consider when deciding who to appoint as the trustee include whether they: • Have the financial and investment skills to manage the trust assets prudently.

• Have the time and resources required to assess the needs of the beneficiary and comply with the regulatory and compliance requirements of the trust.

• Possess a good understanding of the needs of your child and have the right personal qualities – kindness, patience, integrity and understanding.

• Have any conflicts of interest – a trustee needs to always be impartial and act in the best interests of the person with disability.

• W ill be able to act for the duration of the trust – this usually means that they will have to outlive the beneficiary.

• A re trustworthy and responsible and will put the beneficiary’s needs before anyone else’s when administering the trust.

• W ill be available to act on a regular basis – it may be impractical if they travel a lot or have their own personal or professional commitments that take up a lot of their time.

While you can choose an individual, who meets all these requirements, there are also good reasons to consider appointing a professional trustee. One reason is that your child is not then relying upon an individual whose health and personal circumstances may change over time. Another reason is that a professional trustee will have access to all the specialised skills and experience required to administer a trust, such as investment advisers, tax specialists, lawyers and trust managers.

A professional trustee also works with strict in-house governance processes for decision-making to ensure the “best interests” test is applied – and if there is a mistake, the penalties are higher because the standard they are held to is higher under the law.

It is also possible to talk to a professional trustee about a “co-trustee” arrangement so that a friend or family member is appointed alongside a professional. In many cases, it can be a happy medium as decisions are made in conjunction

with a family-nominated trustee, with the professional trustee taking on the administrative burden.

Every family is so different, and their estate planning solution has to be as unique as they are.

TYPES OF TRUSTS AND OTHER ESTATE PLANNING OPTIONS There are many different types of trusts, but ultimately the purpose of safeguarding assets with a particular set of instructions

We are all of us stars, and we deserve to twinkle.

Marilyn Monroe

For more information about how Equity Trustees can support you and your family through advice on trusts and estate planning, contact Susan Bonnici, Senior Estate Planning Lawyer at SBonnici@eqt.com.au.

You can also find out more about our services at www.eqt.com.au/future 62 SO U RCEKI DS .CO M . AU

Every family is so different, and their estate planning solution has to be as unique as they are.

for their usage remains the same, these include: • Special Disability Trust (SDTs) This type of structure is designed to assist family members to provide for the current and future care and accommodation needs of a family member with severe disability and also meet some of their discretionary spending needs for items such as food, clothing, therapy and recreation.

While these trusts are highly regulated, they do have the advantage of social security means tests concessions for the

beneficiary, and eligible contributors to the trust are also eligible for concessional gifting.

However, there are potential downsides of SDTs to be aware of. Firstly, they have strict criteria for qualifying, and their main purpose is to fund care and accommodation. The beneficiary must have severe disability and their caring needs must be rated as “intense” under the Disability Care Load Assessment. When setting up this type of trust, proof must also be provided that the beneficiary will

need care for at least six months, and that the level of care required will be the same, or increased, in the future.

Another limitation of this type of trust is that discretionary spending is capped at $12,500 per year. This may be supplemented by the Disability Support Pension, but it might still be insufficient to meet your child’s needs. As such, if an SDT is viewed as an appropriate strategy, it may be worth combining with another method of support to allow greater flexibility.

eqt.com.au

I SSU E 32 | S P R I N G 2022 63

I N A S S O C I AT I O N W I T H

Your plan checklist • Testamentary Trusts A testamentary trust allows a portion of your estate to be held in trust for your beneficiary during their life or until they reach a specified age. Testamentary trusts do not have the same constraints as an SDT and can be useful for beneficiaries who do not have severe disability, or provide a fund for other expenses that cannot be supported by an SDT. A testamentary trust is set up in the Will and enables the trustee to distribute income and capital in a sustainable manner. The trust funds can be used to acquire accommodation, provide maintenance, support and education; and pay for other expenses, such as holidays.

Excess income can also be paid out or retained in the trust. However, unlike SDTs, assets in a testamentary trust will count towards the income and asset test for determining eligibility for social security entitlements.

Start writing an individual care plan for carers and guardians Write down the wishes of the person living with disability Document accommodation options Describe the activities they enjoy List important family and social connections to be maintained Provide info on how capable the person is of managing their own affairs

List medications and regular specialist appointments Update your Will and plan the division of your assets Think about who will be the legal guardians and executors Check out the different trust structures and consider a potential trustee and/or co-trustee Book in to see a solicitor Review your plan at least every few years

DIRECT GIFTS Of course, some people with a disability can independently manage their own personal and financial affairs. In this case, a direct gift may be a suitable strategy.

Before making a direct gift, you’ll need to consider the tax implications and the impact the gift will have on your child’s social security entitlements.

It’s also important to understand that legislation and personal circumstances can change. Any direct gifts may need to be managed by a financial attorney or manager if the beneficiary loses mental capacity after the gift is made. Therefore, it is important to understand the level of support they will require before settling on a course of action.

SUPERANNUATION For many Australians, superannuation is their biggest asset outside the family home, and many parents opt to leave their superannuation death benefits to a child with disability. Your children can receive superannuation death benefits in a tax6 4 SO U RCEKI DS .CO M . AU

effective manner and can also receive an income stream from the super fund.

You’ll need to review your super nominations and check whether money can go into a trust or can be paid to a beneficiary directly.

COMBINING STRATEGIES There are a number of options available, and it’s possible that no single strategy will be exactly right for your son or daughter.

Combining two or more strategies may be appropriate – but to get it right and provide flexibility for future changes in your child’s needs and capacity, it is important to do your homework and seek the right legal advice.

child’s needs may increase or decrease over time. My daughter is only seven, so what’s right for her now probably won’t be the best solution in five or 10 years’ time. We never know what’s around the corner – medical science may improve our child’s position, or their health may decline resulting in a need for a higher level of care. This is one of the most difficult parts about living with a family member with disability, you don’t know what the future holds. But you can start preparing for it.

By Susan Bonnici Susan Bonnici is a senior estate planning lawyer at Equity Trustees and mother of three, including a daughter with a rare chromosome deletion called

REVIEW YOUR PLAN

Phelan-McDermid syndrome.

Once you finish your plan and you’re happy with it, make sure you review it at least every couple of years. Remember a lot can change even in a short time – your

Equity Trustees is a specialist in wills and estate planning, developed on a foundation of more than 130 years of experience. eqt.com.au/trustee-and-wealth-services

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Our friends at Brolly Sheets are giving away THREE Texi Nappy bundles each containing 120 nappies. Suitable for waists 60-100cm (youth), 105-150cm (medium) and 120-170cm (large). Texi disposable pull-ups are comfy to wear and offer a high level of protection against leaks, thanks to clever design with sustainable pulp for extra absorbency. RRP $240 per pack. independentlyyou.com.au

win

win

win

win

What’s better than building a tower? Well knocking it down, of course! Kids love the feel of these soft, lightweight sensory play blocks. They come in 15 different shapes and sizes and five vibrant colours. The 32-piece set will keep the kids occupied for hours. Bliss. RRP $390 sensoryconnect.com.au

Sick of stripping the bed in the middle of the night when there is an accident? Now you don’t have to. Simply whip off the Bed Mate and your sheets underneath remain perfectly dry. Super stylish, plastic-free and 100 per cent waterproof, Bed Mates will save you stress, time and washing – most importantly, they will give you back some much-needed sleep. $100 voucher. themidnightgang.com

win

win

Midnight Gang - Bed Mates

Blocks to build and create

win

win

Best-selling Australian children’s author, Sally Rippin, tells the deeply personal story of her ADHD and dyslexic son’s struggles to read – and how he was let down by an education system that is all too quick to label children as “difficult”. Wild Things is set for release on September 21, but is available for pre-order through Booktopia.

RRP $29.99 booktopia.com.au

win

win

Wild Things

I SSU E 32 | S P R I N G 2022 67

Standing

Learning

Supports communication

Provides more opportunities for peer interaction

“NDIS SPEAK”

Increases alertness

Improves self-confidence

can be tricky!

Aids cognitive development

Improved access to environment

Equipment manufacturer, Leckey, and distributor, Sunrise Medical, have put together these useful posters to help assist families when writing goals sunrisemedical.com.au and benefits around Assistive Technology.

The benefits of

STANDING

1. Paleg, G. S., Smith, B. A., & Glickman, L. B. (2013). Systematic review and evidence-based clinical recommendations for dosing of pediatric supported standing programs. Pediatric Physical Therapy, 25(3), 232–247. 2. Goodwin, J., Colver, A., Basu, A., Crombie, S., Howel, D., Parr, J. R., … Cadwgan, J. (2018a). Understanding frames: A UK survey of parents and professionals regarding the use of standing frames for children with cerebral palsy. Child: Care, Health and Development, 44(2), 195–202.

3. Goodwin J, Lecouturier J, Crombie S, et al. (2018b) Understanding frames: A qualitative study of young people’s experiences of using standing frames as part of postural management for cerebral palsy. Child Care Health and Development 44(2): 203–211 4. Goodwin J, Lecouturier J, Smith J, et al. (2019) Understanding frames: A qualitative exploration of standing frame use for young people with cerebral palsy in educational settings. Child Care Health and Development 45(3): 433–439.

The benefits of

WALKING

fo stifeneB gniklaW

SUPPORTS PEER AND FAMILY INTERACTION Children can be included in everyday activities with friends and family.

IMPROVES CONFIDENCE AND INDEPENDENCE Allows children to participate – gaining confidence in playing with friends.

PROVIDES MORE OPPORTUNITIES FOR PEER INTERACTION Being at eye level allows children to better communicate and engage with their peers and teachers.

COGNITION Interaction with friends improves ecnedifskills noc seand vorpm I verbal promotes learning.

INCREASES ALERTNESS Children are typically more alert and engaged when in a standing position because of improved circulation and blood flow.

PROMOTES PSYCHOLOGICAL WELLNESS noitacinummoc sdiA Participation and play noitingoin c dactivities na is fun and improves mood.

IMPROVES SELF-CONFIDENCE Children can engage and gain confidence to play with their friends and siblings.

ylim af dnaCOMMUNICATION reep stroppuS AIDS AND noitcaretni

ecnednepedni dna

SOLVING laDEVELOPS cigolohcysp sePROBLEM tomorP ssenllew SKILLS Practice and new experiences with others help to develop skills and melborp spoleveD manage snew lliks gsituations. nivlos INCREASES PARTICIPATION IN nEVERYDAY oitapicitrap sLIFE esaercnI efil yto adybe revincluded! e ni K ids love Having

improved self-initiated mobility allows children to actively participate. ua.moc.lacidemesirnus .rehT syhP rtaideP .yevrus ediwnoitan a :seitilibasid htiw nerdlihc rof sreklaw troppus fo esu ’stsipareht lacisyhp cirtaideP .J smadA ,J gnileB ,WS yoCcM ,AS woL .1 nilC .weiver citametsys a :stnemriapmi rotom htiw nerdlihc rof sgnittes loohcs dna emoh ni esu reniart tiag fo semoctuO .R enotsgniviL ,G gelaP .2 .9–183:)4(32;1102 CMB .yevrus modgniK detinU a :seitilibasid htiw nerdlihc rof sreklaw troppus fo noitpecrep dna esu ehT .M.J ,nayR & .W ,niveL ,.C ,egroeG .3 .19–7701:)11(92;5102 .libaheR :ssenthgirpu fo ecnacifingis ehT .V thgirW ,K tnecniV-nosniboR ,H ttocS ,EB nessoR ,P reveeKcM .4 .5-10420-020-78821s/6811.01/gro.iod//:sptth .)0202( 825 ,02 rtaideP .29–083:)3(82;3102 .coS ylibasiD .nerdlihc rof reklaw eerf-dnah a ot sesnopser s’nerdlihc no snoitcelfer ’stnerap

6 8 SO U RCEKI DS .CO M . AU

SUPPORTS COMMUNICATION S tanding enhances respiratory capacity – improving voice creation and volume.

IDS IN COGNITIVE DEVELOPMENT A Interaction and enhanced play time with friends promotes skill development.

I MPROVED ACCESS TO ENVIRONMENT Standing allows better access to places like kitchen benches and chalkboards to enhance participation.

Benefits of Seating The benefits of

SEATING FACILITATES OPPORTUNITY FOR IMPROVED SOCIAL INTERACTION AND PARTICIPATION Children enjoy spending time with friends. A comfortable and supportive seating system allows them to engage for longer periods of time.

PROMOTES GROSS MOTOR AND TRUNK DEVELOPMENT Children can improve reaching skills and coordination when they are sitting in a stable position.

AIDS SELF-CARE OPPORTUNITIES A stable body position allows children to learn dressing and grooming skills.

ASSISTIVE TECHNOLOGY

Facilitates opportunity for improved social interaction and participation

ENHANCES PLAY SKILLS W hen sitting comfortably, children can engage in play and have fun with Promotes grosstheir motor and trunk development friends.

PROMOTES UPPER LIMB AND HAND Aids self-care FUNCTION opportunities Children can gain range of motion and strength in their upper limbs when their posture is properly supported.

Enhances play skills INCREASES COMFORT When children are comfortable, they upper limb are able to sit longer Promotes and be included in and hand function more activities.

IMPROVES ATTENTION AND COGNITIVE Increases comfort FUNCTIONING When a child is comfortable and stable, learning and skill-development is Improves attention and enhanced. cognitive functioning sunrisemedical.com.au sunrisemedical.com.au

1. Barton C, Buckley J, Samia P, Williams F, Taylor SR, Lindoewood R. The efficacy of appropriate paper[1]based technology for Kenyan children with cerebral palsy.

Disability and Rehabilitation: Assistive Technology 2020; DOI: 10.1080/17483107.2020.1830442 2. Angsupaisal M, Maathius CGB, Hadders-Algra M. Adaptive seating systems in children with severe cerebral palsy across International Classification of Functioning, Disability and Health for Children and Youth version domains: a systematic review. Developmental Medicine & Child Neurology 2015; 57: 919-931.3. Surkar SM, Edelbrock C, Stergious N, Berger S, Harbourne R. Sitting Postural Control Affects the Development of Focused Attention in Children With Cerebral Palsy. Pediatric Physical Therapy 2015; 27: 16-22. 4. Sahinoglu D, Coskun G, Bek N. Effects of different seating equipment on postural control and upper extremity function in children with cerebral palsy. International Society for Prosthetics and Orthotics 2017; 41: 85-94. 5. Inthachom R, Prasertsukdee, S, Ryan SE, Kaewkungwal J, Limpaninlachat S. Evaluation of the multidimensional effects of adaptive seating interventions for young children with non-ambulatory cerebral palsy. Disability & Rehabilitation: Assistive Technology 2020; 25: 1-9.

Did you know an AT request can be made at ANY time?

Whaaaat? Yes, some of us here didn’t realise either!

You DO NOT need to wait until your annual plan review to ask for the Assistive Technology your child needs.

As your child’s requirements are constantly changing, there is in-built flexibility in the NDIS for AT requests.

Our friends at Leapin! have this advice:

It’s possible to submit an Assistive Technology (AT) Assessment or request to the NDIA at any time.

There are several ways to make an AT request: • A sk an allied health professional such as an occupational therapist or physiotherapist to assist with filling out an AT Assessment form to be sent to the NDIS. • Request funding by submitting a quote for the AT item yourself, along with a Letter of support from the allied health professional or qualified assessor indicating why the item is reasonable and necessary for your child’s disability.

• At a plan reassessment.

Please be mindful that while an AT request can be submitted at any time throughout your child’s plan, your request may initiate a plan reassessment by the NDIS.

Recent changes also mean participants with flexible AT funding in their plans can now access a wider range of AT items without submitting a quote. For certain items, a Letter of support from a qualified assessor may be sufficient to use flexible Capital funding for the purchase.

Low cost, low risk AT can also be purchased from the Consumables budget without permission, if it is reasonable and necessary and will help to meet your child’s goals.

AT is an area that changes regularly.

For the latest information, please visit the NDIS website ndis.gov.au/ participants/assistive-technologyexplained ----With Rebekah Devlin

I SSU E 32 | S P R I N G 2022 6 9

Strollers

KEY C

Children

Y

Youth

A

Adults

Discover the perfect stroller to explore and access the community in a safe and FUNctional way!

C

BINGO EVO MINI & BINGO EVO

Bingo Evo Mini

*See supplier list over page

Manufacturer: Hoggi Supplier: AP, AR, DJ, GTK, MF Bingo Evo Mini - Up to 25kg Bingo Evo - Up to 50kg • T he Bingo Evo and Bingo Evo Mini are robust stroller options with adjustable supports to suit a range of children, including those with high needs.

C

• Forward or rear facing: Easily

Y

remove and switch the seat unit around so your child can

Bingo Evo

see you, or see the world.

• T he Bingo stroller range features the Adaptive Suspension System, absorbs bumps from the ground, allowing the frame to be flexible in all directions, even diagonally which is effective on rough terrain.

Z I P P I E V O Y A G E E A R LY C I N T E RV E N T I O N S T R O L L E R Manufacturer: Zippie Supplier: SM • Up to 30kg • Zippie Voyage is an early intervention

BINGO SPEX

C Y

Stroller manufacturer: Hoggi Seating manufacturer: Spex Supplier: AP, AR, GTK, ILS, MF, PAFL, SNS

stroller, complete with a quick-folding lightweight stroller frame, making transportation easy and practical.

It features easy-to-use folding triggers, adjustable handles and foot operated locks.

• T ilt and recline functionality to help

• Up to 50kg

improve a child’s positioning and assist

• T he Bingo Spex provides an optimum

with feeding, digestion, respiratory

seating support designed to accommodate even the most challenging postures.

• Combines with the innovative rehab stroller

function and visual orientation: Tilt (with a range of 35°) or recline (of up to 180°).

• T he Voyage stroller positions your

– the Bingo OT. The Adjustability of both

child for optimum growth and

systems provides maximum benefits for

development by using positioning

children with complex requirements.

features including head supports, JAY

• O ffers a range of colours to suit any style.

chest straps, height adjustable backrest

Stand out from the crowd with the Chilli Red

and lateral trunk support. Supports

or look pretty in pink with the Calypso.

a baby through to toddler years.

70 SO U RCEKI DS .CO M . AU

PRODUCT REVIEW C

C O N VA I D C RU I S E R

Y A

Manufacturer: Convaid

Supplier: ACM, AR, AP, DE, GTK, MF, E • Up to 113kg • T he Convaid Cruiser is a 30° fixed-tilt buggy that improves postural control through upper body positioning.

• S elf-Tensio is Convaid’s unique

COME AND TRY!

self-tensioning seating system which provides pelvic positioning; back

Most of these strollers will be on display at our expos: sourcekids.com.au/disability-expo

straps allow for individual adjustment to the lumbar and thoracic regions of the back.

• One-piece, height-adjustable push handle – ergonomically comfortable and adjustable in height and angle for different heights of caregivers.

*Chat to a product specialist

DURO STROLLER

C Y

C O N VA I D E Z R I D E R

about your child’s C

Manufacturer: Convaid

Y

Supplier: AR, GTK, ILS, MF, PAFL, SNS

Supplier: ACM, AR, AP,

A

• Up to 75kg

DE, GTK, MF, E

• Super compact folding makes the Duro easy

• Up to 114kg

Manufacturer: Hoggie

to transport and stow in the boot of your car.

• 4 0° of reclining back support means you

• E Z Rider is more suitable for individuals who have some

can relax in the Duro when being out and

degree of upper body control,

about gets tiring.

as it has a more upright seat

• T he Duro is individually customisable to suit requirements, with proven accessories from the Bingo Evo stroller range.

individual needs

and back angle.

• A compact, lightweight, folding stroller with five years’ growth capabilities.

• 10° of fixed-tilt with four seat widths, allowing for growth adjustment.

KIMBA NEO

C Y

Manufacturer: Ottobock Supplier: AP, BW, DE, GTK, M, SPE, U • Up to 50kg • K imba provides postural and functional benefits that children require.

• Multifunctional seat unit (goes on stroller base or indoor seating base).

• T ilt mechanism and easy seat adjustment for active and rest positions.

I SSU E 32 | S P R I N G 2022 71

PRODUCT REVIEW

LEGGERO RE ACH Manufacturer: Ottobock

C Y

Supplier: AP, HIA, JJ • Up to 50kg • L eggero Reach stroller is ideal for children with mild to moderate support needs.

• Its adjustability makes for a great fit, promoting good posture, which, in combination with a tray, helps with eating,

C

playing and learning.

• Fully adjustable to allow for growth.

Y

HIPPOCAMPE A BEACH WHEELCHAIR Manufacturer: Vipamat Supplier: ACM, AP, BW, GTK, M, SPE, SWCO • Up to 130kg

PIXI

C

• Compact all-terrain beach wheelchair, easy to steer.

Y

• Fold-down back seat, removable push bar and detachable wheels.

Manufacturer: Eurovema

• Hippocampe all-terrain beach chair

Supplier: AP, AX, MF

has received numerous awards for design,

• Up to 50kg

making the beach and water-related

• T he step-up footplate, is a very robust

activities accessible

design, allowing the child to self-

for everyone.

transfer into the stroller without it tipping over whilst climbing in.

• A great stroller to push, with its ballbearing castors making it easy to move and highly manoeuvrable.

• T he compact frame can be easily folded down to place in the boot of a vehicle.

C

CRICKET

Y

Manufacturer: R82 Supplier: AR, GTK, MF, E,

EASY FOLD

• Up to 50kg • Cricket is a lightweight foldable buggy with a two-position back recline option for the user to change from a sitting position to a relaxed position.

• A s the user grows, Cricket’s seat depth, seat width and

C

height of footrests can be

J A Z Z A D VA N T A G E

adjusted according to

Manufacturer: Thomashilfen

the child’s size.

Supplier: AP, AX

• Easy fold and lightweight – extremely compact

Y

• Up to 40kg • T ilt-In-Space and back rest recline with easy-adjust leg rest angle.

when folded;

• Convenient foot-operated wheel lock.

self-standing and

• Sprung suspension absorbs vibrations and

requires minimum

ensures optimum riding without

storage space.

compromising steering for the carer.

72 SO U RCEKI DS .CO M . AU

KEY

S T I N G R AY Manufacturer: R82

C Y

Supplier: ACM, E

C

Children

Y

Youth

A

Adults

• Up to 48.5kg • Adjustable seat tilt and back angle

SWIVEL ACTION

adjustment – seat unit tilts 45° and back reclines down, allowing your child to rest during the walk.

• Unique swivel action for forward/ rear-facing options. 80° turnable seat revolutionary function with a 180° turnable seat unit – even with the child seated.

• T he Stingray is folded quickly and fits into almost any car.

SPEC I AL TOMATO E IO STROLLER Manufacturer: Special Tomato Supplier: AR, DE, DO, ILS, SNS • Up to 50kg

C Y

• T he Special Tomato EIO stroller provides mild to moderate positioning.

• Grow the stroller with the compatible Liners or Sitters to provide more support where required.

• Includes an eight-point harness, padded seat back and laterals and head support.

C Y

D O B U G GY Manufacturer: DoBuggy Supplier: DO, JJ • Up to 50kg • A ble to carry children up to 50kg, the DoBuggy comes with a five-point adjustable harness and adjustable height footrest.

X R O V E R M U LT I F U N C T I O N A L OUT DOOR STROLLER

C Y A

Manufacturer: xRover Supplier: AP, AR, AX, MF, M, PAFL, SAP • Up to 120kg

• Wrapover seat edges cover the metal framework, ensuring that your child keeps their hands and arms safe from getting trapped or bruised.

• It is available in one size and seat width and has in-built adjustability.

• xRover is equipped with many features that make it ideal for most outdoor terrains, from city streets to the beach – even snow.

• Front and rear frame arches to protect the head and body, safety belts with five-point safety buckles.

• C an also be attached to the back of an adult bicycle so everyone can enjoy the ride.

SUPPLIERS ACM: AC Mobility acmobility.com.au // AM: Active Mobility activemobility.com.au // AR: Active Rehab activerehab.net.au // AC: Aidacare aidacare.com.au // AX: APEX apex.com.au // AP: Astris PME astris-pme.com.au // AME: Australian Mobility Equip amemobility.com.au // BW: Beach Wheels beachwheels.com.au // DJ: Dejay dejay.com.au // DO: Doability doability.com.au // E: Etac etac.com/en-au/australia // GTK: GTK gtk.com.au // HIA: Healthcare Innovations Australia hiaus.net.au // ILS: Independent Living Specialists ils.com.au // JJ: Just Juniors justjuniors.com.au // MF: Medifab medifab.com.au // M: Motum motum.com.au // PAFL: Professional Assistance for Living pafl.com.au // SNS: Special Needs Solutions specialneedssolutions.com.au // SPE: Specialised Paediatric Equipment at4kids.com.au // SWCO: Specialised Wheelchair Company swco.com.au // SAP: Step Ahead Paediatrics stepaheadpaediatrics.com.au // SM: Sunrise Medical sunrisemedical.com.au // U: Urgoform urgoform.com.au

I SSU E 32 | S P R I N G 2022 73

Respite with peace of mind.

Allowah’s respite stays provide kids some time away from family to take a break from daily routine while staying in an accessible home-away-from-home.

With daily activities, the opportunity to interact with new friends and expert medical and nursing staff on hand, you can have peace-of-mind while your child enjoys a break from routine.

Our team of nurses and support staff are especially trained in caring for kids with complex needs. With at least one Registered Nurse on site at all times, and experienced paediatricians on call 24 hours a day, 365 days a year, you can be confident that your child is well looked after during their stay.

“Allowah has provided a home away from home for our severely disabled daughter, Grace. She is much loved and expertly cared for by dedicated medical and allied health care professionals.”

- Kimberly, mother

Your child may be able to purchase an Accommodation Package using NDIS Core Supports.

NSW

Allowah is a modern and bright facility in Dundas Valley, Sydney. Our facilities include hoists, specialty beds and cots.

Why not book your child in for the night or for a week?

Allowah can provide respite for children with requirements for tracheostomy care or home ventilation. We can also provide respite for children with home total parenteral nutrition (TPN).

Our wonderful support staff organise activities for the kids each day. It’s a great opportunity for new connections, experiences and fun!

“Since finding Allowah it has changed our lives. We don’t think we would have gotten through all the ups and downs in our journey without Allowah.”

- Brigitte, mother

Start a conve rsatio today n !

We are centrally located in Sydney at 8 Perry Street, Dundas Valley, NSW, 2117

02 8877 3400 admin@allowah.org.au Come visit us on social media

www.allowah.org.au

QLD

Paeds in a Pod offer a range of specialist and allied health professional services to support children and their families in the Brisbane region.

BOOK NOW

Appointments currently available with our Ashgrove Occupational Therapists, Emma Crook and Amy Lee.

www.paedsinapod.com.au | 07 3177 2000

INSPIRE, EMPOWER, UNITE Mums raising children with special needs We invite you to join the most exclusive, inclusive club - Source Mama. Unapologetically candid, uncut + heartbreakingly real, whilst uniting, elevating and fiercely empowering. Join the greatest pride of lionesses in our community that supports mums raising children with special needs.

Join the Source Mama community now! @sourcemama 76 SO U RCEKI DS .CO M . AU

sourcemama.com.au

SOURCE MAMA

QLD

I SSU E 32 | S P R I N G 2022 77

QLD

“ Freedom of Motoring” NDIS Provider# 4050004526

NDIS Approved

Get Your Family Mobile with Simple Upgrades To Your Vehicle Volkswagen CADDY GEN 5 with a lowered floor set up

Disability Vehicle Conversion

for Wheelchairs & Mobility Scooters • Van Fit Outs • Turney Seats • Hoists • Docking Stations

• Wheelchair Ramps & Lifts • Hand Controls • Careva Harnesses • Custom Jobs

To find out how to simplify your family’s transportation

call (07) 3474 6575 or visit www.alternatemobility.com.au Brisbane Service Agents for: NDIS Approved

78 SO U RCEKI DS .CO M . AU

Alternate Mobility Unit 1/5 Miller Street Slacks Creek Qld 4127 Email: sales@alternatemobility.com.au

VIC

I SSU E 32 | S P R I N G 2022 79