Source Kids Spring 2022 by Source Kids

AUTISM Differencesnotdeficits ASSISTIVE TECHNOLOGY CHEAT SHEET independence T he issueSchool’s out: What next? Product review STROLLERS + + Protecting your child’s future ESTATE PLANNING SAFETYCYBERTIPS ISSUE 32 / SPRING 2022 Moving out of home

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

Directly employ people you already know and trust as your Support Workers. 1300 729 CarerSolutions.com.au839 We do the tricky stuff. You do you. Australia’s first and only service for directly employing Support Workers. Our unique service enables you to: Employ people suitable for your needs Determine the pay rate with your Support Workers - agree on the best rates for you and them Be in control of who you want to employ and when Our expert team manage your payroll and compliance obligations We keep you across the latest updates from the NDIS and our community And we now offer our Personalised Plan Management service nationally.

5 We Love 7 School’s out: Now what? 8 The 5-step postschool project 12 Café with an extra serving of heart 18 Working partnershipin with your school 25 Moving out of home 27 Tristan’s journey to independence 31 Product spread 34 Visual tracking –Sight v Vision 40 Rare isn’t that rare 44 Cyber safety – Navigating the minefield SPRING 2022 contents 50 Autism differences– not deficits 52 It’s time to play – Inclusive play spaces 56 Coming of age – Untangling the paperwork trail 58 Supporting your young adult with decision making 61 Estate Planning – Protecting your child’s future 66 Watches and reads 67 Competition corner 68 TechnologyAssistive cheat sheet – Learning “NDIS speak” 70 Strollers review 40 12 HEAD OF CONTENT: Rebekah Devlin PRODUCT EDITOR: Kelly Wilton HEAD OF SALES & BUSINESS DEVELOPMENT: Matthew Rainsford, matthew@sourcekids.com.au // 0409 418 362 HEAD OF EVENTS: Naomi Sirianni, naomi@sourcekids.com.au // 0447 755 043 GRAPHIC DESIGN: Emma Henderson PUBLISHER/CEO: Emma Price 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, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.

4HELLO

There’s a saying that the nights are so very long, but the years are so very short. In those ofoverwhelmingexhaustingearly,anddaysparenthood,it can feel like things will never change. And then, all of a sudden, your child is starting school, then high school, then you’re choosing outfits for their graduation ball. For parents, the end of school can be a period of tremendous change, worry andItForinstability.ourkidstoo.canalsobethe most beautiful of times - as you see this incredible young adult transform in front of your eyes. 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. But the truth is, I already know it will. Sure, our journey is different, but really, so is Theeveryone’s.purejoyyou get from milestones reached is that much sweeter because you know how hard your child has worked to get Nothingthere.is taken for granted. These amazing children of ours constantly astound us. And so we dedicate this issue to all the spectacular young adults finding their way in the Welcomeworld.to the Independence Issue, a celebration of everything that is to come, and some practical advice on how to get you there. Bek SOURCEKIDS.COM.AU

MAGAZINE

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 way.” There will be bands, DJs and entertainers, as well as a silent disco and chill out zone.

@amplifiimusicfestival

STRUCKET

The Strucket is the world’s first connecting strainer/ bucket combo – 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

CONTAIN THE MESS

ROUTINE HELPER

AMPLIFII - ACCESSIBLE MUSIC FESTIVAL

Second Scout’s Routine Helper is perfect for 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

ISSUE 32 | SPRING 2022 5 FUN STUFF

It’s no fun when kids are sick, but the Spewy can at least make clean up that bit easier. Versatile and hygienic, the Spewy is a spill blanket which can absorb up to two litres of liquid, so there’s no mess for you to deal with. One less thing to worry about during difficult times. spewy.com.au

Encourage your child’s creative play, fine motor skills and cognitive development with this gorgeous fold-out magnetic landscape. Featuring Australia’s unique marsupials, reptiles and feathered friends, the Magna Carry – Aussie Animals will capture young imaginations and keep them occupied for hours. tigertribe.com.au

DISCOVERING THE MANY WAYS TO COMMUNICATE LOVE

PLAY WITH OUR NATIVE FLORA AND FAUNA

aspiringFortech-heads

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

Can Bears Ski? is the heartfelt tale of a young bear who is coming to terms with being deaf. Supported by his father and the people around him, our little bear learns to find his way in the hearing world. This is the debut children’s book from deaf author and poet, Ted Hughes, who draws on his own experiences to show how isolating it can be for a deaf child. Through his moving words, this beautifully-illustrated book, also shows how many ways there are to communicate love. penguinrandomhouse.com

MULTILINGUAL INFORMATION ACCESS

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 SOURCEKIDS.COM.AU FUN STUFF

As her son got older, reality set in for Fiona Lawton – it was time to make a “purposeful plan” for life after school. There 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?”

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.

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.

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.

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 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.

“It meant that we needed to get creative.”

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

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?

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

NOW WHAT? School’s out: POST-SCHOOL ISSUE 32 | SPRING 2022 7

“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.

If your loved one is thriving at school and well-connected with friends, then plan for them to all transition together.

“Friends, family, medical and allied health teams, and teachers were expecting a wellconsidered answer –and we had none.”

It’s worthwhile to do some “Good Life Planning” to help identify the passions, interests, likes/dislikes and meaningful relationships that are important for your loved one. In Year 12, we did a Good Life Planning session for our son as a family.

step 1 step 2 step 3

PREPARE A TAPESTRY OF

If your loved one is not yet ready to leave school due to emotional preparedness, lack of available post-school options, family needs, or skill development, work with the school principal to explore if they can repeat a year. However, if they are ready to leave school, then start a purposeful transition in collaboration with outside services and school, with the aim to gradually reduce school-based activities and attendance. In Year 10, we connected with two disability services that supported teenagers and young adults in the home and with social and community access. We were looking for a “hub” – a place where our emerging young adult could hang out, be with friends and do fun things while developing skills and independence. He started attending on weekends, and this gradually increased in Year 12 to a few days per week. By the end of Year 12, he was attending school two days a week and was doing a range of activities including sailing and gym, and life skills training on the other days.

ADJUST YOUR TRANSITION TIMETABLE TO WORK FOR YOU AND YOUR FAMILY

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.

It highlighted his need to feel a sense of belonging and community, his love of live music and musical theatre, a desire to continue to learn, and the critical need for ongoing age-appropriate connection with his peers. No one service could offer all that we were looking for, so we connected with a range of providers to create a rich and varied program – one where his school cohort was going so he could maintain relationships and friendships; another where he had a dedicated support worker to help him with physical therapy and to continue to develop his communication and daily life skills; and yet another provider who focussed on social connection and community access in key interest areas such as sailing, musical theatre classes, and outings with friends.

OPTIONS

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.Myhusband 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.

The ProjectPost-School5-step 8 SOURCEKIDS.COM.AU POST-SCHOOL

While school is a “one stop shop” of services, life in the post-school adult world does not necessarily need to look the same.

step 5

By Fiona Lawton Fiona Lawton is National President of the Angelman Syndrome Association Australia and owner and director of Neu Pathways neupathwaysaustralia.comAustralia.

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!

PLAN REASSESSMENT

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. step 4

Dressed for success Year 12 formal

PARTICIPATE IN RITES OF PASSAGE

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?

ISSUE 32 | SPRING 2022 9

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?

The Joy to Move Freely

1300 131 884 | astris-pme.com.au WheelchairsManualAlternateSeating Positioning & Sleep Systems Standers TrainingGait Tilt-In-SpaceWheelchairs Shower Toileting& SeatingWheelchairSystemsWheelchairsPowered Exercise Wheelchair HIRE AVAILABLE Showrooms in Sydney • Newcastle • Young • Canberra • Melbourne • Brisbane

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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!

24-HourPositioning APEX Mobility supplies Australia’s largest range of specialised Assistive Technology equipment and supports for 24hr positioning, mobility and care. DEALERS AUSTRALIA-WIDE apexmobility.com.au 1300 212 192 ActivityRifton Chair Anatomic Sitt Starﬁsh Pro CommanderThomashilfen 10AM12PM 8-10 AM 6-8 AM 9PM6AM 12-2 PM 2-4 PM 4-6 PM 6-9 PM KlickKlaxon xRover TimoElla STABILObedSmartSeatCareﬂexProSOSPPod

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.

EXTRAHEART SERVING OF 12 SOURCEKIDS.COM.AU

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.

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.

How has it grown?

Tell us about your employees

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.

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.

ISSUE 32 | SPRING 2022 EMPLOYMENT13

When we opened our doors, we had five people with disability employed with ATE.

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.

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!

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.

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

Is previous necessary?experience

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

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.

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. "We hope they enter with a smile and leave with an even bigger one." Would you encourage other parents to open a business in partnership with their child?

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!

By Rebekah Devlin

14 SOURCEKIDS.COM.AU EMPLOYMENT

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.

AGE: 36 LENGTH OF SERVICE: Since February 2021 ROLE: Back-of-house – helping to cook with the chef, food preparation, coming up with menu items.

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

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! 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?

PLANS FOR THE FUTURE: I want to be a full-time artist with my own shop. MeetemployeeATE Zac KEEN TO CHAT? Reach out to ATE

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

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.

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!

hello@allthingsequal.com.auat:

Julie

Taylor Senior ProductPaediatricSpecialist Benji Braund ProductPaediatricSpecialistComplexRehab Leigh McBurnie ProductPaediatricSpecialist Hayley Knight ProductPaediatricSpecialist Marcus James ProductPaediatricSpecialist&Technician QueenslandSpecial Needs Solutions is now part of ILS Kids ilskids.com.au | 1300 366 398 Our team has an in-depth knowledge of assistive technology equipment for children. We provide support before, during and after equipment trials to ensure families get the best outcomes. Our friendly and experienced team understands the importance of responsiveness and provides timely information from equipment trials. ILS Kids accesses a wide product portfolio, which ensures our recommendations are not limited by access to certain products. Clinical ExtensiveApproachProduct Portfolio Fast Responses

Our Team Specialises in Assistive Technology Equipment for Children As a leading supplier of paediatric equipment for kids with disabilities, we are passionate about helping children with additional needs to live life to the fullest and to achieve their maximum potential.

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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 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.

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.

“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.

One 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.

“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 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.

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.

SCHOOL THOUGHT of 18 SOURCEKIDS.COM.AU

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“Weworkplaces.havesome great organisations who support us and are very welcoming when our students visit,” Jacqui says.

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assessment − such as a written test − won’t work for our students,” Jacqui explains. Each course has a requirement for students to complete practical hours, which is met through a combination of on-site experiences and work placement.

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Providers who deliver SLES help young people prepare, look for and gain employment. They provide achieveactivitiesindividualisedmeaningful,capacitybuildingsoyoungpeoplecantheiremploymentgoals.

Work experience is a feature from Years 10 to 12 for all students and can lead into an apprenticeship in a trade. One former student is currently studying social work at “Weuniversity.know that finishing school can be “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.”

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ISSUE 32 | SPRING 2022 EDUCATION19

By Rebekah Devlin 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.

“Our hospitality students sell coffee to staff on a weekly basis, as well as making and selling milkshakes to their fellow students. The retail students sell snacks at recess once a week,” Jacqui says. “Generally, in a mainstream school, when students do their VET work placements, students are expected to travel to attend theses placements independently. For many reasons, this is not possible for our students. Instead, we have students do their work placements in groups of three or four with a supporting staff member.

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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.”

WhatSLESare they?

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• Travel

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 skills Personal development skills supports typically include: Work 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).

These

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“External Work Placements mean students get to practise their skills in a real workplace. Students always finish these placements exhausted, but so proud.” These programs translate into genuine life outcomes − they have former students who are living independently and employed in various industries including hospitality, retail and even one who works in a law firm and sets up the boardroom for meetings and events. Also leading the way is Melbourne’s Heatherwood School, which caters for secondary students with a mild intellectual disability. “The school’s focus is learning for life by providing an education that enables young people to grow into independent, confident, capable adults, fully equipped to make their own way in the world,” says Lesley Foster, who has the rather impressive job title of "director of happiness" and teaching and learning “Developingcoach.confidence and resilience features in every classroom, in every year level, as the school builds self-esteem and an attitude of achievement and success.” As a Registered Training Organisation, students have the opportunity to nationally-accreditedobtain certificates in hospitality, agrifoods, retail, active volunteering and sport and recreation. From Year 9, the students work in the Heatherwood fully-accredited trade kitchen, preparing lunches for staff and students.

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“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.

With Rebekah Devlin

20 SOURCEKIDS.COM.AU EDUCATION

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.

THE IMPORTANCE OF WORK EXPERIENCE

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

EACH CHILD’S EDUCATION SHOULD BE TAILORED AND INDIVIDUAL

START ABOUT LIFE POST-SCHOOL?

WHEN CONVERSATIONSSHOULD

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).

“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.”

In Year 11, we start talking to parents about post-school options and continue this Jacqui’s tips schoolwithcollaborativelyworkingyour

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.”

“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.Ourfamilies 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.”

For

“We start talking to students about their post-school options during Community and Family Studies in Years 11 and 12.

WORK TOGETHER WITH OTHER PARENTS

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.”

Strollers Wheelchairs SeatingIndoor Standing Car seats Walkingaids NightaidsTime EQUIPMENT,REHABTAILOREDFORYOURLIFE.Trikes Ring and speak to our friendly sta on 03 5441 8966 Helping you reach your goals, with rehab equipment tailored for your journey! Pango activity chair Anchor bath chair Klip walker Leckey BeMe seat Hero carseat Ipai carseat Starlight carseat Magic Mobility chairs Have you seen our newest products below: We o er free trials and demonstrations of our vast range of products. And will travel most of Vic and into lower NSW to see you. More product information on what we o er can be found on our website: activerehab.net.au Ring and speak to our friendly sta on 03 5441 8966

22 SOURCEKIDS.COM.AU

Can you provide some examples of activities covered? Sure! There is a range of activities that the NDIS may cover:

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

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

Any purchase made with your son’s NDIS 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?

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

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.

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.

What can I use this budget to pay for?

Assistance with Social and Community Participation Ask a manager!plan

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

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.

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.

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

What is Assistance with Social and Community Participation?

ISSUE 32 SPRING 2022 23 IN ASSOCIATION WITH

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

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.

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.

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.

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.

Tabithaknows!

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.

• Visiting the local library or attending an event.

• Building skills to participate in social 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.

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.

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

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

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

• Recreational and sporting activities.

Our snacks keep tiny tummies topped up between meals as well as supporting little ones’ development such as practising their pincer grip. There is something for everyone from 6 months old (perfect for weaning and teething) and we guarantee it will be bursting with lots of yummy flavours and different textures. snacks for little ones

Find out more at @kiddyliciousANZkiddylicious.com.au

Perfect

Spreading

MOVING OUT ISSUE 32 | SPRING 2022 25

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Practical considerationsplanninginclude: • Location • Accessibility Affordability Type of accommodation Living arrangements – alone or with others?

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.

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

Planning is key

Moving out of home is a huge milestone in any young person’s life. Here are some practical steps to importantfamilythepreparewholeforthisriteofpassage.

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!

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

WINGSYOUR

• What have they learnt along the way?

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

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

• Going 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.

Don’t forget to plan for after the big move

26 SOURCEKIDS.COM.AU 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 accommodation.yourtoNDISableasyourthisgoodgoal,yourindependentlyIfapeoplechanges,canfeelsenseofloss.livingisadultchild’sthenit’saideatohaverecordedinNDISplanyoumaybetoaccessfundingassistwithsearchfor

After all, the transition into independence is dynamic and doesn’t stop once the Baptist Care SA is a registered NDIS provider supporting South Australians to get the most out of their NDIS disability-ndisbaptistcaresa.org.au/service/plan.

• Where did they begin?

Explore your networks

• How did they prepare?

• 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:

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

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

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.

Mental and preparationsemotionalinclude:

A CoordinatorSupport is a great resource. They can arrange for you to meet and Theyonandwithconnectprovidersotherpeoplethisjourney.canask the difficult questions and may have knowledgemoreto find out what you need to know. If you don’t already have yourtoplan,fundingCoordinationSupportinyouryouwillneedrequestthisatplanreview.

• Do they have the skills to care for themselves?

• Are they ready?

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

TIPS

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

• Consider 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?

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

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

Supported Independent Living (SIL) is the NDIS funding that supports people to live as independently as possible. Specialist Disability Accommodation (SDA) is the accommodation/housing in which those SIL funding is typically for people who need 24/7 support while living in a shared home. It exists to cover the cost of the support staff in the house. There is a lot of confusion about how SIL funding works because it can be complex and can work a bit differently to other parts of the NDIS. Often the best way to work out what it means for you, is to talk to someone.

To receive SIL supports, you need to have the right NDIS funding. As with any NDIS funding, it will come down to whether the supports are reasonable

SHORT TERM ACCOMMODATION

• May help to maintain your current living situation by giving your carers a break. Short Term Accommodation includes personal care, accommodation, food andUsually,activities.the NDIS funds up to 28 days of Short Term Accommodation per year, which can be used flexibly, meaning you might want to use it in a block of up to 14 days at a time or for one weekend a month.

SIL

Accommodation and support AND SDA -

He is up and ready each day at 6am and in between helping with the household chores, you will find him with his support workers, Ketan and Papi, devouring fluffy pancakes at The Pancake Kitchen or taking in the scenery on the Murray Paddle Boat. He is also a diehard Geelong AFL fan. Tristan is now also using public transport, which is something he really enjoys. And his confidence is growing every day – he’s learning to budget and use his money by doing his banking and shopping. “I get to spend it on nice things,” he says.

Sometimes a short stay away from home:

JOURNEY TO INDEPENDENCE and necessary for your situation. At June 30, the average annual NDIS payment for someone receiving SIL supports was $340,900. Because SIL tends to be quite a significant amount of money, you will need to really prove how reasonable and necessary it is for you - a lot of people do not receive SIL funding, as it tends to go to people with very high needs.

WHAT KIND OF PLAN WILL YOU NEED?

• Gives you the chance to try new things.

He is happy and his sense of accomplishment and independence has flourished since the big move. “I do my own washing. I go to the laundromat and do my own washing there,” Tristan explains.

Tristan's story Moving out of home was a carefully planned, combined effort between Tristan, his family and Baptist Care SA Tristan is now proudly living in his own home with the assistance of support workers. He takes great joy in being self-sufficient, enjoying the responsibility of maintaining a home and taking care of his health and wellbeing. He even likes taking out the garbage each Monday morning!

WHAT'S THE DIFFERENCE? ISSUE 32 SPRING 2022 27

Short Term Accommodation, including respite, is funding for support and accommodation for a short time away from your usual home. It covers the cost of your care in another place for up to 14 days at a time. You might have a short stay with other people, or by yourself. It’s often funded when your usual carers aren’t available, or for you to try new things.

Endeavour Foundation supports people with disability to live, learn, work and flourish according to their own interests and priorities. endeavour.com.au By Rebekah Devlin with Endeavour Foundation.

While the social and psychological benefits are clear to see, there are also significant physical benefits of playing the game, according to the experts at the NAPA Centre, a paediatric clinic specialising in physiotherapy and occupational therapy.

Football now in THE FRAME 28 SOURCEKIDS.COM.AU

“We are passionate about ensuring that football really is for all, and always endeavour to provide inclusive football opportunities for young players,” he says.

Chris Adams, the community football manager at the Northern Suburbs Football Association and Northern Tigers Football Club, has been involved in the launch and says it’s exciting to see the sport growing in popularity.

“Come and Try sessions are now being held regularly, with players working on their dribbling using a few different drills, moving around the pitch and listening for different instructions.“Itwasfascinating to see some of the kids use their frames to their advantage. One participant, Oscar, was using the frame to shield the ball then dribbling at great speeds and changing direction very quickly. Oscar’s technique was off the charts. At one point, he rolled the ball backwards, back heeling it through his own frame and then turning 180-degrees so he could instantly dribble

“It has been wonderful to see the impact Frame Football has had on our team of committed footballers, who are now members of our club.

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. The 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’snew Gameframe Kick from Quest is designed to make kicking and ball control easier and enhances the experience of children and young adults who play theStevegame.Andrew, from Dejay, describes Frame Football as the ideal reverse inclusion sport, similar to wheelchair rugby or basketball –everyone plays in a frame, meaning an even playing field for all involved.

the other direction – it was unbelievable to watch," he says. “Seeing the parents' smiles, whilst they cheered on their kids during the match was amazing to watch and something that everyone should be given the opportunity to experience.”

“It highlights how they can use their walker as a strength, not as something that separates them from their peers,” says NAPA physiotherapist, Joe O’Brien.

“As a physio, it is great to see how so many of the areas we often target and work on during therapy can be incorporated into a fun, functional and inclusive environment.”

By Rachel Williams

Frame Football is classed as a development sport and falls under the banner of the IFCPF (International Federation of Cerebral Palsy Football) and CPISRA (Cerebral Palsy International Sport and Recreation Association), who are working with local sporting bodies to bring the program to life.

Dejay Medical is offering to loan frame runners for the Cup and Camp in Queensland. Those needing a loan can email therapy@dejay.com.au to secure Forequipment.moredetails, visit australasian-camp-and-cup-2022dejay.com.au/

Dejay launched Frame Running in Australia promoting the sport with “Now I Can Run”, 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 if you don’t want to,” Bella says. “It is a great way to meet other people, exercise and socialise. I just feel fantastic and free out there running. Everyone is very supportive and it’s such an amazing community of Unfortunatelyrunners.”Bellais unable to attend the upcoming Australasian event, but she is 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 their seats and chest plates for example, so all of this can be changed to suit your needs and likes," she says.

The event includes a frame running competition from beginner level through to elite, as well as activities including gym work outs and high-performance coaching. Connie Hansen, the inventor of Frame Running, will be in attendance to present to therapists and families on ideal positioning and the benefits of frame running.

in late 2018 and is working with a wide range of therapists and sporting bodies to grow the activity nationally. One of Dejay’s clients is Isabella Auld, who recently took to the track at the Denmark Camp and Cup, as one of six Australians competing against runners from 16 other countries.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 three events, coming away with a gold medal for the 40 metres and a silver medal in the 60 metres. “She met so many other inspiring athletes and is already planning her trip back next year,” Bella’s mum Stacey says. “It was the most amazing experience for her, especially being with so many other competitors from across the world.” Bella trains twice a week on the track and one session in the gym and is actively

From beginners to the elite – frame runners from all around Australia are coming to compete.

The team at Dejay Medical is gearing up for the event, which will involve competitors across a range of ages, including some young children who have aspirations of competing in the Paralympics on home soil in 2032.

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

supporting health and fitness through frame sports

The other BIG SPORTING EVENT heading to QLD

While the Olympics are coming to Queensland in a decade, there is a sporting event of significance heading to the Sunshine State later this year that’s creating a bigThebuzz.inaugural

ISSUE 32 | SPRING 2022 ADVERTORIAL29

Helping you achieve your goals for over 35 years www.dejay.com.au 02 9838 8869 therapy@dejay.com.au

The Six F-Words for Child Development FFitness uncti oning Family Fut FureFun riends Research in childhood disability has identified six F-words that should be the focus for development. Clinical@sunrisemedical.com.au For more information: ww w.SunriseMedical.com.au The Leckey Range of peadiatric products are created with the six F-words at the heart of their design. Early Activity SystemBeMe Squiggles+ DOWNLOADMyWay LECKEY RANGE BROCHURE 30 SOURCEKIDS.COM.AU

PRODUCTS31

The Time Timer is perfect to help stay on track with a task. Simply set the timer for the amount of time you need (up to 60 minutes), and it will sound an alarm once time is up. The Time Timer provides the ability to judge how much time is left without having to know how to tell time. mydiffability.com.au

A simple yet effective visual tool for time management. illumelearning.com.au Magnetic Hoodie –magnetic zips for easy wearing.

Visuals sequencingindependenceencouragebyassistingourkidstounderstandand"whatcomesnext".Thereareanumberofpractical,aswellasstylish,productsoutthere.

FIRST, THEN One of the most-simple forms of visual support, the First-Then board allows our kids and young adults to clearly see the task they are currently undertaking and what is coming next. It comes with 20 common school and home-based activities with associated Boardmaker symbols. illumelearning.com.au ISSUE 32 | 2022

The Lad Collective’s braille assistive bedding set has corner ID labels to help our kids and young adults with the daily independent task of making their own bed. It comes in three great colours, with marked braille and tactile corner straps to let you know which corner goes where. Now if only there was a product that could make the bed for you! theladcollective.com

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The ultimate kit for making visual schedules at home or school. mydiffability.com.au

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Because everyone deserves to look and feel good! EveryHuman and Jam the Label are just some of the awesome companies absolutely smashing it in the ever-growing world of adaptive clothing. From shoes to shirts, swimwear to bibs, and everything in between, these trendy threads promote independence as well as self-expression. EveryHuman easy on-off shoes (above) –create a much bigger opening for the foot to slip into. jamthelabel.comeveryhuman.com.au

FOR ENQUIRIES PLEASE RING 1300 485 485WWW.GTK.COM.AU

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. Working in these settings has given him the opportunity to work with patients with functional neurological Ashishdisorders.then moved on to work in a private clinic for the next 10 years, where he has treated a variety of musculoskeletal injures as well as rehabilitation for patients with stroke and multiple sclerosis. Ashish believes that complete patient care is an integral part of any patient’s rehabilitation and with the right process, help patients move better and ultimately live better lives. When he is not working as a physiotherapist, Ashish has great interest in sports. He is currently working as a head coach for Spirit FC.

AshishMeet Isaac...

OFFICIAL PROVIDER

Specialist Physio joins the GTK team!

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

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

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” comeVisionfrom.is more complicated. It considers 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.

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.

Optometrist v behavioural optometrist – WHAT’S THE DIFFERENCE?

ITHAVEEYESTHEEYES

VISION AND SIGHT ARE TWO VERY DIFFERENT THINGS

34 SOURCEKIDS.COM.AU

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

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.

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.

Is childwhatthisyoursees?

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.

Looking for the signs

The concepts of vision and sight are two verythings.different

Easily Sufferdistracted?fromanxiety or headaches?Notwanttogo to school? Get car sick? Clever at everything but school?

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

ISSUE 32 SPRING 2022 VISION35

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.

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. 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 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? Turn their head to the side to Closesee?one eye? Avoid reading? Skip lines when reading? Read the same line again? Get close to the page?

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

Despite receivechildrenmedicalwidespreadadvances,withararediseaseoftenneveradiagnosis.SyndromesWithoutANameistheretoofferhelp.

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.Thisequates 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.

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“Rarecountry.isn’t that rare,” says Professor Sue White, clinical geneticist at not-for-profit specialist laboratory, Victorian Clinical Genetics“Collectively,Services.the impact of rare diseases is similar to the impact of diabetes.”

Syndromes Without A Name (SWAN) Australia is the only organisation that provides information, support, connection and systemic advocacy for these families.

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

Rarethatisn’trare 38 SOURCEKIDS.COM.AU

“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.

ISSUE 32 SPRING 2022 39 RARE DISEASES

SWAN regularly searches their database to match families and carers

“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“Sometimesabout. 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.

“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 pass the condition on to our child?’.

REDUCING THE ISOLATION

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

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

RECEIVING A DIAGNOSIS

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

“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.

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.

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

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

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.

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.“Oneof 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,

onlyassociationsunderstandwethediseaseofaround5000ofour20,000genes.”

• Around 30 per cent of families seeking a diagnosis see between six and 20 doctors before getting the correct •diagnosis.Around40 per cent of people living with rare diseases (NDIS).InsuranceNationaltherapistsprofessionals,amongaboutlimited•diagnosticnoteconomicsupports(includingandpsychologicalfrommultipleoftenoranfamilies•available.curediseases•disease.withindifferently,affectnature.life-limitingdegenerativechronic,can•leastmisdiagnosedareatonce.Rarediseasesbedebilitating,progressive,andinTheycanpatientseventhesamerareManyrarehavenoortreatmentsChildrenandlivingwithundiagnosedrarediseaseexperiencechallenges,healthtolackofsocialdisability)andimpacts,tomentiondelays.ThereisoftenknowledgerarediseaseshealthandtheDisabilitySchemeisn’t that rare. the impact of rare diseases is similar to the impact of diabetes.”

five per cent of the world’s population.

SWAN - swanaus.org.au VCGS - vcgs.org.au By Rebekah Devlin and Kelly Wilton

who have children with the same or similar conditions, or those who care for a child of a similar age and live in a similar region. In addition to emotional support, families often share information, coping strategies, medication and therapy experiences, adding to the pool of knowledge on these rare conditions.

SWAN hosts parent information sessions, peer support events and social networking opportunities where families can form lifelong bonds. These include face-to-face events such as family morning teas, virtual events, a siblings group and a bereaved parents group. With around 60 per cent of children with an undiagnosed or rare disease admitted to hospital at least once a year, SWAN also supports families through their hospital care packs program. The program is designed to make hospital stays a little more comfortable for families and is a practical way to show that people care in what is often a very stressful time.

• willgeneticorwithof•disease.livingAustraliansthat•millionAmericaUnitedpopulationequivalentapeopletheCollectively,numberoflivingwithrarediseaseistotheoftheStatesof–330people.ItisestimatedtwomillionarewitharareAround30percentchildrenbornarareand/undiagnosedconditionpassaway

40 SOURCEKIDS.COM.AU RARE DISEASES

While some children are eligible for Medicare-base funding for genomic tests, uptake of paediatricians ordering these tests has been slow. There are many reasons for this including paediatricians becoming familiar with test ordering processes, awareness of test options and confidence organising what is a complex test.

SWAN’S WISHLIST Heather says SWAN families want equal access to genetic and genomic tests, leading to an accurate diagnosis for their child, with faster turnaround times. Currently, access to genomic tests varies across Australia due to funding differences from state to state and within individual hospitals.

“Rare

Collectively,

THE FACTS

• Diseases (approximatelywithmillionapproximately•diabetes.morecollectivelydiseasesthan•genetic.rare•2000fewerwhenconsideredareraretheyaffectthan1inpeople.70-80percentofdiseasesareTherearemore7000rarethataffectpeoplethanThereare300peoplelivingararedisease

SWAN is currently fundraising $50,000 to employ a genetic counsellor to give families long-term support throughout the many months and years it may take to get a full and accurate diagnosis. The counsellor would provide continuity, support and understanding throughout thisTheprocess.organisation is also campaigning for equal access to healthcare and disability supports and better holistic care coordination. It wants greater recognition of the health, economic, psychosocial challenges they face, and increased research and funding into undiagnosed and rare genetic conditions.

before their fifth 30-50•birthday.Onlyaroundpercent of families will receive a diagnosis in their child’s lifetime. The average time to a diagnosis is five to nine years.

Rare disease

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

MINEFIELDT

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“Gamingboard. 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.

WHAT ARE THE RISKS OF ONLINE GAMING?

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.

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

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?"

44 SOURCEKIDS.COM.AU

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.

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.

PLAYING STRANGERSWITH 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.

Navigating the

VIRUSES AND MALWARE

EDUCATION IS KEY 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.

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.ThenextAmaze 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.

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!

5 tips for online safety ISSUE 32 | SPRING 2022 45 CYBER SAFETY

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

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.

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.

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“Gaminglanguage.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."

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).

54321

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.

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Autism 50 SOURCEKIDS.COM.AU DIFFERENCES NOT DEFICITS

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

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 Imagine,cure.”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” 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?

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 Late Bloomer by Clem BooksHardiepublishedBastowbyGrantRRP$34.99

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.

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.

PAULSENKRISTOFFERIMAGE: ISSUE 32 | SPRING 2022 AUTISM51

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.”

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

“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.”

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

Livvi’s Places - Touched By Olivia Foundation

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.

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.

We Rock The Spectrum Preston, VIC & Wollongong, NSW

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.

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.

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 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.

WHAT MAKES A GOOD INCLUSIVE PLAY SPACE?

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

52 SOURCEKIDS.COM.AU INCLUSIVE PLAY It’sTOtimePLAY!

werockthespectrumaustralia.com

Rocky Bay, Sensory Rooms

Byrockybay.org.auKellyWilton

ISSUE 32 | SPRING 2022 53

WOW Sensory Centre

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

Morphett Vale and Tusmore, SA

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

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

Our Sensory Space

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.

dedicatedspacesgymsIndoorspaces&gymssensoryIndoorplaysensoryandplayarecentres designed for the specific needs of children with andadditionaldisabilities,needssensory requirements. Soft mats, flying foxes, climbing walls, chill out zones they have it all to suit all Sensoryabilities!playis beneficial in many ways, helping build connectionsnerve in the brain’s cognitivedevelopment,supportsSensorypathways.playlanguagegrowth, fine and gross motor interaction.skillsproblemskills,solvingandsocial

For more info contact advertising@sourcekids.com.au BUSINESS here and reach25,000+ people every issue! ADVERTISE YOUR Are you stuck trying to access child therapists? Therapy your way. Anywhere Anytime. explorelearnmove.com.au Medline International Two Australia Pty Ltd 2 Fairview Place, Marsden Park NSW 2765 1800 110 medline.com.au511 Medline International Two Australia Pty Ltd 2 Fairview Place, Marsden Park NSW 2765 1800 110 511 © 2022 Medline Industries, LP. All rights reserved. Medline is a registered trademark of Medline Industries, LP. PC16 6-May22-V1 Remedy cleansers come in rinse and no-rinse, lotions, gels, foams and sprays to cleanse and condition the skin. Remedy moisturisers absorb quickly to hydrate and condition the skin without feeling sticky or greasy. Remedy barriers are formulated to keep moisture out at the same time keep hydration in. MOISTURISERS BARRIERSCLEANSERS • unisex onesies to help keep wandering hands out of nappies & pants • deters inappropriate undressing & other challenging behaviour • range includes back-zips & tummy access styles for tube feeding • available in sizes for kids & adults (great for aged care) re-usable protection & incontinence accessories now available Large bodysuits to assist everyday living www.wonsie.com.au Registered NDIS Provider NEW 54 SOURCEKIDS.COM.AU

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WHEN TEENS TURN 14

Untangling the paperwork trail

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.

WHAT PAYMENTS MIGHT MY CHILD BE ELIGIBLE FOR?

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.

COMING OF AGE

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

56 SOURCEKIDS.COM.AU

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

Resources to help you and your child understand and apply for the DSP: • DSP & Me: Your Guide to the Disability Support Pension. disability-support-pensiondsphelp.org.au/applying-for-the-

WHEN TEENS TURN 15

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.

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.

WHAT DO I NEED TO PREPARE?

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

2. Pensioner Education Supplement

At 15, your child can apply for their own Medicare card. They can also apply for a Tax File Number WHEN TEENS TURN 16

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

A payment that assists with the costs of returning to study.

• They can also open their own bank account.

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.

3. Education Entry Payment

A payment that assists with the costs of full or part-time study. education-supplementservicesaustralia.gov.au/pensioner-

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

1. Disability Support Pension (DSP)

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.

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.

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.

A payment that assists people with a permanent physical, intellectual or psychiatric condition that stops them from working. disability-support-pensionservicesaustralia.gov.au/

4. Ex Carer Allowance (child) Health Care Card

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. get-mobility-allowance?servicesaustralia.gov.au/who-can-

ISSUE 32 | SPRING 2022 57 HOW TO GUIDE

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. allowance-from-child-to-adulttransfer-carer-payment-or-carer-servicesaustralia.gov.au/

5. Mobility Allowance for people who are not eligible for the NDIS

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. care-cardex-carer-allowance-child-health-servicesaustralia.gov.au/

get-education-entry-payment?servicesaustralia.gov.au/who-can-

CHANGE ONCE MY CHILD TURNS 16? 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

DO MY OWN PAYMENTS

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

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.

• Wellbeing – friendships, behaviour support, communication and mental health.Afurther 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. training/map-your-futureyacvic.org.au/ydas/resources-and-

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

• 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 CAN I SUPPORT MY CHILD TO MAKE THEIR OWN DECISIONS?

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

yourSupportingchildwith

• School and post-school options.

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.

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

58 SOURCEKIDS.COM.AU DECISION-MAKING

• Importance of work experience while at school.

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

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

Some examples could include:

• Getting the right NDIS support for your teen.

• Having your child present and involved in conversations and meetings that concern them.

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

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.

• Finding different ways to gain an insight

• Future planning.

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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.

yourProtectingchild’s Future

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.

" ISSUE 32 | SPRING 2022 61 IN ASSOCIATION WITH

MAKE A START – HOWEVER SMALL

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.

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.

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

My daughter is unable to communicate this information, so it’s important to me that I have it all written down.

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.

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

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?

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”.

I know first-hand that having a child with a disability means that adding another task to your to-do list can be overwhelming.

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.

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).

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

62 SOURCEKIDS.COM.AU ESTATE PLANNING

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

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

• Will 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.

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

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

SETTING UP A TRUST

Some of the factors to consider when deciding who to appoint as the trustee include whether they:

CHOOSING A TRUSTEE AND CONSIDERING A COTRUSTEE ARRANGEMENT

• Have the financial and investment skills to manage the trust assets prudently.

There are many different types of trusts, but ultimately the purpose of safeguarding assets with a particular set of instructions

TYPES OF TRUSTS AND OTHER ESTATE PLANNING OPTIONS

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.

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

Marilyn Monroe

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

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.Insimple 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.

eqt.com.au ISSUE 32 SPRING 2022 63

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.

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

• 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.

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

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 taxYour checklistplanStartwritinganindividualcareplanforcarersandguardiansWritedownthewishesofthepersonlivingwithdisabilityDocumentaccommodationoptionsDescribetheactivitiestheyenjoyListimportantfamilyandsocialconnectionstobemaintainedProvideinfoonhowcapablethepersonisofmanagingtheirownaffairs

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 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.

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.

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

UpdateappointmentsyourWill and plan the division of your Thinkassetsabout who will be the legal guardians and

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leastReviewsolicitorBookco-trusteetrusteeconsiderstructuresdifferentCheckexecutorsoutthetrustandapotentialand/orintoseeayourplanateveryfewyears

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.

COMBINING STRATEGIES

REVIEW YOUR PLAN

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.

DIRECT GIFTS

At BrightSky, you can shop all your specialist healthcare products from the comfort and privacy of your own home. Our convenient, one-stop online shop delivers an extensive range of continence, wound and skin care, nutrition, respiratory, mobility aids & equipment, pressure management and Personal Protection Equipment (PPE) direct to your door. Shop our reliable, discreet, home delivery service now at … A brighter way to shop healthcareyourproducts Call us on 1300 886 601 www.bright orders@brightsky.com.ausky.com.au pjama.com.au Pjama Down Under travelingsolutionAbreathableSoftandConfidentandConvenientdiscreetsafeandusefulfor WHOLESALERS: BRIGHTSKY, EVERYHUMAN, MEDICALSTORE BEDWETTING SOLUTIONS Be independent using Pjama’s Takes away the stress from bed wetting Bedwetting Alarms & Protection PyjamassuccessfulAchieveresults To book your free assessment admin@timmermansmethod.com.auemail or phone 0411 696 839 Adelaide • Melbourne Combining parent education and intensive therapy to unlock childrens’ potential. The new standard in Intensive Therapy CME | TheraSuit | Powerplate | Parent Education We believe in the unthinkable. We live the unbelievable. We know the @sourcekids@sourcekidsmagazinesourcekids.com.auincredible. Join the Source Kids community SOURCE KIDS IS ON A JOURNEY. COME JOIN US. ISSUE 32 SPRING 2022 65

Fredrick is a friendly fox, but he has no friends because, well, he’s a fox! When a new neighbour moves into Fredrick’s favourite gum tree, he is excited to meet them, but they are scared and hide at the top of the tree. Will this new neighbour give Fredrick a chance and be friends with a fox? An important lesson for kids (and us all) about not judging others, and looking past what is on the outside. Fredrick teaches us that once we truly get to know someone, we realise we are not so different after all. fredrickthefox.com.au

66 SOURCEKIDS.COM.AU & Watches Reads

FOOTSTEPS OF TWO Joanne Copeland shares her journey and the life-altering moment when her twins, Zalie and Flynn, were diagnosed as autistic. Joanne shares the challenges faced following the unexpected double diagnosis in her honest, heartfelt account of what life has been like since – without hiding any of the raw emotions of denial, blame and guilt she encountered along the way. It is a story of hope and lessons learnt, helping readers to find inner strength… even on the darkest days. joannecopeland.com

Books and shows on our radar right now…

FREDRICK THE FOX

Blocks to build and create 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

This podcast is for anyone impacted by congenital or childhood heart conditions and covers topics including what it’s like receiving a new diagnosis, preparing for open-heart surgery and looking after your mental health. From the Heart has also added a new series exploring Aboriginal and Torres Strait Islander people’s experiences of congenital and childhood acquired heart conditions. Search “From the Heart” on Spotify or Apple Podcasts. heartkids.org.au/page/245/heartkids-podcast

Wild Things

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 a voucher$100

EMBRACE KIDS Taryn Brumfitt, the woman behind the Embrace documentary, has set her sights on empowering the next generation with a new doco, Embrace Kids. The powerhouse changemaker has collaborated with body image expert, Dr Zali Yager, on one of the most important health issues of our time - helping our children and teens feel comfortable about, and confident in, their bodies. A must-watch for every member of the family with screenings being held around the country. theembracehub.com

FROM THE HEART – FROM HEARTKIDS

Midnight Gang - Bed Mates

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

A reboot of Heartbreak High will be making its way to our Netflix screens very shortly. The eight-part drama for young adults is set, once-again, in Hartley High and includes a diverse range of characters, including Quinni, who is played by autistic actor, Chloe Hayden. If you were a fan of the original series in the 90s, you are going to love watching this reboot with your kids. #bringbackdrazic. netflix.com

Listen!

ISSUE 32 | SPRING 2022 67 WATCH, READ & LISTEN

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

Brolly Sheet Bundle

HEARTBREAK HIGH

CORNERCOMPETITION Win one of these great prizes by entering online at sourcekids.com.auwinwinwinwinwinwinwin winwinwinwinwinwinwin

PROVIDES MORE OPPORTUNITIES FOR PEER INTERACTION

Learning 68 SOURCEKIDS.COM.AU

Children can be included in everyday activities with friends and family.

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

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

Standing enhances respiratory capacity – improving voice creation and volume.

WALKING

1.LowSA,McCoySW,BelingJ,AdamsJ.Pediatricphysicaltherapists’useofsupportwalkersforchildrenwithdisabilities:anationwidesurvey.PediatrPhysTher. 2011;23(4):381–9.2.PalegG,LivingstoneR.Outcomesofgaittraineruseinhomeandschoolsettingsforchildrenwithmotorimpairments:asystematicreview.Clin Rehabil.2015;29(11):1077–91.3.George,C.,Levin,W.&Ryan,J.M.Theuseandperceptionofsupportwalkersforchildrenwithdisabilities:aUnitedKingdomsurvey.BMC Pediatr20,528(2020).https://doi.org/10.1186/s12887-020-02401-5.4.McKeeverP,RossenBE,ScottH,Robinson-VincentK,WrightV.Thesignificanceofuprightness: parents’reflectionsonchildren’sresponsestoahand-freewalkerforchildren.DisabilySoc.2013;28(3):380–92. Supports communication Improves self-confidence Increases

PROMOTES PSYCHOLOGICAL WELLNESS Participation in activities and play is fun and improves mood. DEVELOPS PROBLEM SOLVING SKILLS Practice and new experiences with others help to develop skills and manage new situations.

INCREASES ALERTNESS

Benefitsof Walking Supportspeerandfamily

IMPROVES SELF-CONFIDENCE

forProvidesdevelopmentAidsenvironmentImprovedalertnessaccesstocognitivemoreopportunitiespeerinteraction

The benefits of

AIDS IN COGNITIVE DEVELOPMENT Interaction and enhanced play time with friends promotes skill development. IMPROVED ACCESS TO ENVIRONMENT Standing allows better access to places like kitchen benches and chalkboards to enhance participation. The benefits of STANDING can be tricky!

Children can engage and gain confidence to play with their friends and siblings.

Being at eye level allows children to better communicate and engage with their peers and teachers.

IMPROVES CONFIDENCE AND INDEPENDENCE Allows children to participate –gaining confidence in playing with friends. AIDS COMMUNICATION AND COGNITION Interaction with friends improves verbal skills and promotes learning.

SUPPORTS PEER AND FAMILY INTERACTION

“NDIS

SUPPORTS COMMUNICATION

INCREASES PARTICIPATION IN EVERYDAY LIFE Kids love to be included! Having improved self-initiated mobility allows children to actively participate. SPEAK”

psychologicalparticipationconfidenceinteractionImprovesandindependenceAidscommunicationandcognitionIncreasesineverydaylifePromoteswellnessDevelopsproblemsolvingskills

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. sunrisemedical.com.au

sunrisemedical.com.auStanding

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

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.

Children can gain range of motion and strength in their upper limbs when their posture is properly supported. INCREASES COMFORT When children are comfortable, they are able to sit longer and be included in more activities.

Our friends at Leapin! have this advice:

and EnhancesparticipationplayskillsAidsself-careopportunitiesIncreasescomfort

FACILITATES OPPORTUNITY FOR IMPROVED SOCIAL INTERACTION AND PARTICIPATION

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.

sunrisemedical.com.au

Promotes upper limb and hand function Promotes gross motor and trunk development

When sitting comfortably, children can engage in play and have fun with their friends.

Children enjoy spending time with friends. A comfortable and supportive seating system allows them to engage for longer periods of time.

PROMOTES UPPER LIMB AND HAND FUNCTION

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

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.

The benefits of SEATING

Benefits of Seating

A stable body position allows children to learn dressing and grooming skills.

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

There are several ways to make an AT request:

Withexplainedparticipants/assistive-technology-ndis.gov.au/RebekahDevlin

• 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.

• 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.

Facilitates opportunity for social interaction

IMPROVES ATTENTION AND COGNITIVE FUNCTIONING When a child is comfortable and stable, learning and skill-development is enhanced. sunrisemedical.com.au

Improves attention and cognitive functioning

AT is an area that changes regularly. For the latest information, please visit the NDIS website

Children can improve reaching skills and coordination when they are sitting in a stable position.

improved

ENHANCES PLAY SKILLS

AIDS SELF-CARE OPPORTUNITIES

• Ask 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.

PROMOTES GROSS MOTOR AND TRUNK DEVELOPMENT

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.

ISSUE 32 SPRING 2022 69 ASSISTIVE TECHNOLOGY

• Offers a range of colours to suit any style. Stand out from the crowd with the Chilli Red or look pretty in pink with the Calypso.

• The Bingo stroller range features the Adaptive Suspension System, absorbs bumps from the ground, allowing the frame to be

The Voyage stroller positions your child for optimum growth and development by using positioning features including head supports, JAY chest straps, height adjustable backrest and lateral trunk support. Supports baby through to toddler years.

BINGO SPEX Stroller manufacturer: Hoggi Seating manufacturer: Spex Supplier: AP, AR, GTK, ILS, MF, PAFL, SNS 70 SOURCEKIDS.COM.AU

supplier*Seelistoverpage Discover the perfect stroller to explore and access the community in a safe and FUNctional way! Strollers

ZIPPIE VOYAGE EARLY INTERVENTION STROLLER

• Forward or rear facing: Easily remove and switch the seat unit around so your child can see you, or see the world.

EvoBingoMiniBingoEvo

C C CY CY CYA AdultsYouthChildren KEY

• Combines with the innovative rehab stroller – the Bingo OT. The Adjustability of both systems provides maximum benefits for children with complex requirements.

BINGO EVO MINI & BINGO EVO

• Up to 50kg

• The Bingo Spex provides an optimum seating support designed to accommodate even the most challenging postures.

Manufacturer: Hoggi Supplier: AP, AR, DJ, GTK, MF Bingo Evo Mini - Up to 25kg Bingo Evo - Up to 50kg

• The Bingo Evo and Bingo Evo Mini are robust stroller options with adjustable supports to suit a range of children, including those with high needs.

Manufacturer: Zippie Supplier: SM • Up to Zippie30kgVoyage is an early intervention 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. Tilt and recline functionality to help improve a child’s positioning and assist with feeding, digestion, respiratory function and visual orientation: Tilt (with a range of 35°) or recline (of up to 180°).

• One-piece,

•

will be on display at our expos: sourcekids.com.au/disability-expo *Chat

Manufacturer:

• Self-Tensio

self-tensioning

CONVAID CRUISER Convaid Supplier: ACM, AR, AP, DE, GTK, MF, E Up to 113kg Convaid Cruiser is a 30° fixed-tilt buggy that improves postural control through upper body positioning. is Convaid’s unique seating system which provides pelvic positioning; back straps allow for individual adjustment to the lumbar and thoracic regions of the back. height-adjustable push handle – ergonomically comfortable and adjustable in height and angle for different heights of caregivers.

Manufacturer: Convaid Supplier: ACM, AR, AP, DE, GTK, MF, E Up to 114kg EZ Rider is more suitable for individuals who have some degree of upper body control, as it has a more upright seat 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.

•

DURO STROLLER Hoggie Supplier: AR, GTK, ILS, MF, PAFL, SNS Up to 75kg Super compact folding makes the Duro easy to transport and stow in the boot of your car. 40° of reclining back support means you can relax in the Duro when being out and about gets tiring. Duro is individually customisable to suit requirements, with proven accessories from the Bingo Evo stroller range. of these strollers to a product specialist about your child’s individual needs

•

• The

Manufacturer:

•

CONVAID EZ RIDER

ISSUE 32 | SPRING 2022 71 PRODUCT REVIEW CAY CAYCY CY

Manufacturer: Ottobock that children require. unit (goes on stroller easy seat adjustment

•

COME AND TRY! Most

•

• The

Manufacturer: R82 Supplier: AR, GTK, MF, E, • Up to 50kg

JAZZ ADVANTAGE

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

LEGGERO REACH Manufacturer: Ottobock Supplier: AP, HIA, JJ • Up to 50kg

• Fully adjustable to allow for growth.

• Leggero Reach stroller is ideal for children with mild to moderate support needs.

• Convenient foot-operated wheel lock.

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

FOLDEASY

PIXI Manufacturer: Eurovema Supplier: AP, AX, MF • Up to 50kg • The step-up footplate, is a very robust design, allowing the child to selftransfer into the stroller without it tipping over whilst climbing in.

Manufacturer: Thomashilfen Supplier: AP, AX • Up to 40kg

BEACHHIPPOCAMPEWHEELCHAIR

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

CRICKET

• As the user grows, Cricket’s seat depth, seat width and height of footrests can be adjusted according to the child’s size.

• Sprung suspension absorbs vibrations and ensures optimum riding without compromising steering for the carer.

• Easy fold storagerequiresself-standingwhenextremelylightweightand–compactfolded;andminimumspace.

• 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.

• Tilt-In-Space and back rest recline with easy-adjust leg rest angle.

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

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

PRODUCT REVIEW 72 SOURCEKIDS.COM.AU CY CY CY CY CAY

Manufacturer: Vipamat Supplier: ACM, AP, BW, GTK, M, SPE, SWCO

• Up to 130kg

• Hippocampe all-terrain beach chair has received numerous awards for design, making the beach and water-related activities accessible for everyone.

•

Manufacturer: Special Tomato Supplier: AR, DE, DO, ILS, SNS Up to 50kg The 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.

DOBUGGY Manufacturer: DoBuggy Supplier: DO, JJ • Up to 50kg Able to carry children up to 50kg, the DoBuggy comes with a five-point adjustable harness and adjustable height footrest. 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.

SPECIAL TOMATO EIO STROLLER

•

STINGRAY

•

• The

ACTIONSWIVEL CYA AdultsYouthChildren KEY 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 SUPPLIERS XROVER OUTDOORMULTIFUNCTIONALSTROLLER Manufacturer: xRover Supplier: AP, AR, AX, MF, M, PAFL, SAP • Up to 120kg • 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. • Can also be attached to the back of an adult bicycle so everyone can enjoy the ride.

•

ISSUE 32 | SPRING 2022 73 CY CY CY CAY

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Manufacturer: R82 Supplier: ACM, E Up to 48.5kg Adjustable seat tilt and back angle 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. Stingray is folded quickly and fits into almost any car.

- Kimberly, mother Your child may be able to purchase an Accommodation Package using NDIS Core Supports.

Respitewithpeaceofmind.

“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.”

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.

02 8877 admin@allowah.org.au3400 Allowah is a modern and bright facility in Dundas Valley, Sydney. Our facilities include hoists, specialty beds and cots. 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). Come visit us on social media We are centrally located in Sydney at 8 Perry Street, Dundas Valley, NSW, 2117 www.allowah.org.au “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 Why not book your child in for the night or for a week? Our wonderful support staff organise activities for the kids each day. It’s a great opportunity for new connections, experiences and fun! Start conversationatoday! NSW

76 SOURCEKIDS.COM.AU www.paedsinapod.com.au | 07 3177 2000 Paeds in a Pod offer a range of specialist and allied health professional services to support children and their families in the Brisbane Appointmentsregion.currently available with our Ashgrove Occupational Therapists, Emma Crook and Amy Lee. BOOK NOW INSPIRE, EMPOWER, UNITE Mums raising children with special needs Join the Source Mama community now! 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. SOURCE MAMA@sourcemama sourcemama.com.au QLD

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Alternate Mobility Unit 1/5 Miller Street Slacks Creek Qld 4127 Email: sales@alternatemobility.com.au NDIS Approved “ Freedom of Motoring” NDIS Provider# 4050004526 call (07) 3474 6575 or visit www.alternatemobility.com.au To find out how to simplify your family’s transportation Get Your Family Mobile with Simple Upgrades To Your Vehicle • Van Fit Outs • Turney Seats • Hoists • Docking Stations NDIS Approved • Wheelchair Ramps & Lifts • Hand Controls • Careva Harnesses • Custom Jobs Disability Vehicle Conversion for Wheelchairs & Mobility Scooters Volkswagen CADDY GEN 5 with a lowered floor set up Brisbane Service Agents for: 78 SOURCEKIDS.COM.AU QLD

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