australia’s national disability magazine April/May 2021 | Volume 31 Issue 2 linkonline.com.au
$9.95AUD / $11.50NZ
– Speaking beyond the catwalk Image; Erica Jane Photography
In this issue: Autism Feature/Accommodation – Building for the future/Spotlight on Artist’s Studio
X850 Find Your Adventure
From the Editor
Cover Story – A model life. Jayson Clymo branching out from the catwalk
Professor Robyn Young from Flinders University speaks to Link about recent ASD developments
Jack’s Story – a 9-year-old with adventurous ambitions
How augmentative and alternative communication can help with speech
Accommodation & Home Support
Happenings – Amy Claire Mills an artist with invisible disabilities with a visible message
Travel & Leisure
Employment April/May 2021
Kymberly Martin email@example.com
Caitlin Maynard firstname.lastname@example.org
Michelle Stevens email@example.com 0419 822 717
Jim L Koh
Production Manager Jacqui Cooper
To subscribe visit www.intermedia.com.au P: 1800 651 422 or E: firstname.lastname@example.org www.linkonline.com.au Link is published six times a year by Interpoint Events Pty Ltd. ABN: 9810 451 2469 A : 41 Bridge Road, Glebe NSW 2037 P : +61 2 9660 2113 F : +61 2 9660 4419 Reprints from Link are permitted only with the permission of the publisher. In all cases, reprints must be acknowledged as follows: ‘Reprinted with permission from Link Magazine’, and must include the author’s byline. The opinions expressed in this publication are those of the authors and do not necessarily represent those of the publisher. The Intermedia Group takes its Corporate and Social Responsibilities seriously and is committed to reducing its impact on the environment. We continuously strive to improve our environmental performance and to initiate additional CSR based projects and activities. As part of our company policy we ensure that the products and services used in the manufacture of this magazine are sourced from environmentally responsible suppliers. This magazine has been printed on paper produced from sustainably sourced wood and pulp fibre and is accredited under PEFC chain of custody. PEFC certified wood and paper products come from environmentally appropriate, socially beneficial and economically viable management of forests. The wrapping used in the delivery process of this magazine is 100% biodegradable.
From the Editor
he year started slowly but as summer disappeared and autumn arrived, 2021 suddenly gathered momentum. Events and product launches took off and the ‘year of the expo’ makes a welcome return. ATSA Expos in Melbourne and Perth are happening in May with program details in this issue of Link. The Face-to-Face Disability Expos start their Eastern Seaboard rollout in April, taking in the Gold Coast, Brisbane, Sydney, the Hunter Region and Melbourne, until November. Entry is free with presentations and speakers from government and disability organisations along with exhibits from a broad range of product and service providers. The APEXPO 2021, dubbed ‘The Ultimate Assistive Technology Virtual Expo & Training Symposium’ is on from April 29-30, with more than 100 items of AT equipment on display for demonstration. Organised by Apex Mobility, it is a virtual expo with a difference with all AT showcased in physical booths, supported by consultants, in ‘real-time’. In this, the biggest ever issue of Link, you will read about 9-year-old Jack Rutherford, who has some bold
Like us on Facebook /linkdisabilitymagazine ambitions and has also submitted a short story he wrote several years ago. Our cover piece is on model and businessman, Jason Clymo who gives ‘inclusive’ his best shot when it comes to the rather dismal track record of people with disability getting onto the media catwalk. Link also visited an artist’s studio at Sydney’s Carriageworks and met up with Amy Claire Mills, an artist with invisible disabilities with a very poignant message too when it comes to ‘inclusive’. It would appear Covid-fatigue has perhaps set in, but it would be wise to remember that pandemics from the not-so-distant past, like HIV/AIDS do not disappear, and prevention efforts and sensible hygiene practices should become the norm for us all, here in the ’Lucky Country’. I mention the ‘Lucky Country’ because I have lost count of the number of people who tell me we are so “lucky to live in Australia.”, especially now.
Kymberly Martin Editor email@example.com
FOCUS ON ABILITY
Link to...Cover Story
A model world – not quite – but change is happening.
Image; Erica Jane Photography
ason Clymo is a model citizen in the disability community. As well as modelling assignments, he recently auditioned for an acting role, is doing a podcast series on disability representation, and runs a marketing agency. He spoke to Kymberly Martin about working in these industries, and his ongoing efforts to facilitate more inclusion and representation for people with disability. Clymo lives in Moama, 2.5 hours outside Melbourne, and joined WINK Models in 2017. Being a wheelchair user has not stopped him from tackling the Australian fashion industry. He has been modelling for nearly four years and found his way into the industry through a friend.
“Kate Radford is an amazing hair and makeup artist based in Melbourne. She was the one who initially made me think of working in fashion. At that time, I saw it as a fun opportunity to make some money, and maybe get paid to travel around Australia or the world. Once I started working in the industry, I quickly realised the many issues that are still present today.” Jason said his current outlook of inclusion, and the roles fashion and media play in forming people’s unconscious biases, is thanks to an organisation called Starting With Julius. “If the activist and model Angel Dixon had not reached out to me, I’m not sure that I would have the understanding and skills that I do now to facilitate inclusion.”
He admitted that, in the face of an ableist society, life for people with disability is never easy, and working in the modelling and fashion industry is no exception. He said this is slowly changing but despite the movement towards 'inclusive fashion' people with disability are still under-represented in mainstream media. He was one of the first models with disability to join a modelling agency, but it remains difficult to break into as persuasion is essential at every level. “You need to convince modelling agencies to include models with disability, as well as the clients who hire models through agencies, he said. “The entire industry has to be educated and this is hard to do. I come from a universal design perspective and believe that people
Link to...Cover Story with disability should be included within the mainstream fashion industry. I’m not a big fan of the term ‘adaptive fashion’ and while I appreciate it is about making clothes that give people with disability more options, I prefer to run with an idea or sentimentality that trickles through the whole industry, not just dedicating a specific section to people with disability.” Clymo has worked with Stellar magazine, Target, Fashion Journal Magazine, and Melbourne Fashion Week. He said Target and Kmart arrived early at pushing the barriers, especially using young children with disability through their catalogues, online and TV advertising. He appeared in a Father’s Day catalogue for Target, who understand that when advertising features people with disability it should not be isolated. “Having a person with disability wearing mainstream clothing is great, but it should not be a tokenistic focus of the shoot.”
Don’t ignore the potential of the market
Employment is an issue, particularly for people with disability and there is lot of money to be made globally from the disability sector. According to Clymo, the socalled ‘Disabled Dollar’ is worth an estimated $2 trillion. “Unfortunately to get attention, whether we like it or not, money does power the world most of the time. Business needs to recognise the potential of people with disability and the rewards that can be made from being inclusive of us. “It’s a fact of life. It would be nice if we could simply appeal to people’s better nature, but that’s not the case. I accept people have to work to budgets and do their job, but what I and many others are trying to do is to show them that this inclusive approach is in their best interests.” While Covid has put the brakes on many things, Clymo recently auditioned for a TV show which could turn out to be his first acting role. He is also working behind the scenes on a podcast series about disability representation in TV &
film, produced by the Attitude Foundation. He is still working on modelling assignments and runs a marketing agency, J2 Content Creation. “In my agency, we work with businesses to help them at every level of their marketing efforts. This means working on strategy, budgeting, websites, social media, content creation, accessibility solutions and much more. “Not everything I do is about inclusion, but I try to introduce elements of inclusion into what I do. I believe that every industry should have inclusion built into it. “The biggest issue or barrier for people with disability - as I see it - comes down to the attitudes and views people hold about us. Everybody has a level of ableism in them, as people have been brought up to value the non-disabled body for whatever reason. “It flows into everything healthcare, employment, education - which is why I am so passionate about using creative industries to try and change peoples’ perceptions of disability. If we can do that then the next time a person with disability applies for a job, the employer will be better informed and hopefully have a more inclusive outlook. “Change is moving in the right direction but obviously I would like to see it moving faster. When we look at it from a human rights perspective, there are still a lot of issues that need to be fixed. However, progress has been made and I feel we should celebrate this - as long as it does not diminish the fact that a greater effort is needed. “ In his free time, Clymo loves to exercise, drink wine with friends, take his fur baby Henry for walks and is currently planning a new house build. The 25-year-old is single, and not particularly looking for a partner at the moment, however he gave Link permission to play matchmaker… or at least, send people to his social media pages. You can follow Jason on Facebook and Instagram at ‘mylifewithwheels’ and to learn more about his marketing agency visit: www.j2contentcreation.com
answers questions about autism
ou might be surprised at some of the things people Google about autism. Is it ‘curable’? What causes it? Why do people with autism like trains? Aruma, one of Australia’s leading disability service providers, looks at five of the top Google searches, and gives us some real answers.
Is autism a disability?
This is a simple one. Yes, it is. Autism is what is called a neurodevelopmental disability, which means it affects how the neurological system and brain function. Autism is complex and as far as we know there is no single cause. Instead, it is likely due to a mix of environmental and genetic factors.
Is autism curable?
There is no cure for autism, but there are different treatments which can be helpful. The earlier someone gets supports, the better. That is why Early Childhood Intervention (which are services for infants or young kids) is so successful. Treatment for someone with autism is also definitely not one size fits all. It will depend on the person themselves. So, depending what a person needs, speech pathology, occupational therapy, skills training, behavioural therapy, sensory therapy, psychology, and at times medication may all help.
Is autism caused by vaccines? Not at all! The anti-vaccine movement was sparked by very unscientific claims made in the late 1990s. These claims (that the measles, mumps and rubella jab and the preservative, thiomersal, could cause autism) have been found to be untrue and fraudulent. Sadly, the legend lives on… The Australian Federal Government has information on the fact that vaccination does not cause autism. Head to www.health.gov. au and search for ‘vaccination and autism’ for helpful resources.
Why do people with autism like trains?
Trains of course are not just loved by people with autism, but it’s true that some people with autism do like trains. Why? Because sometimes it could just be a personal preference like anything else! But there may be some things about trains that do attract attention. Some people with autism, for example, like to watch spinning objects like wheels. The sensory rhythmic sounds and the movement trains make can also be appealing. Others are drawn to things which have a regular routine like a train timetable. While some people are drawn to things that can be categorised by make, model, type, and size.
Do all people with autism have exceptional abilities?
It is important to remember that autism is a spectrum. And yes, some people with autism do have exceptional abilities, far in excess of the general population. This is called savant syndrome. But it is rare and is only the case for 10 per cent of people with autism. Some people can multiply and divide large numbers in their head. Others can answer the question, ‘What day of the week was March Keen to hear more from Aruma? 22nd, 1932?’, with ‘Tuesday’ The organisation is one of Australia’s instantaneously. leading disability service providers. Some can play up to 22 What makes them truly like no other instruments, measure distance provider is that they live by the words without using any instruments, learn ‘You. First’. languages in a few days, or memorise It is a simple and powerful huge volumes of information. philosophy. No matter what, their We don’t actually know what customers always come first. causes savant syndrome. There are For more details go to: many theories but not one theory is www.aruma.com.au or call the Aruma able to cover all people. team on: 1300 538 746
Zoe and Luka
Entries for the NOVA Short Film Festival closing soon Caitlin Maynard reports
very year there is a short film festival put on by NOVA Employment that focuses on ability. Last year the festival had 267 entries, which included 82 school entries and 61 international films. All these films are based on disability with a focus on abilities within different disabilities. There were screenings around the world and the competition received entries from 19 countries. The films were screened on both SBS and Foxtel. The festival is a creative and fun way to advocate for disabilities and show everyone who watches these films some of the positive aspects of different disabilities. Taking out the NOVA Employment choice award for the 2020 Focus on Ability Short Film Festival was 18year-old Sydney resident Zoe Fraser for her film ‘A Gift’. Zoe won a new Kia Cerato for her film. Zoe Fraser’s short film was about showing the positives to her brother Luka’s life with autism. Zoe remembers the day her six-yearold brother was diagnosed with Asperger’s, and him telling her: “I want people to know how I feel”. Zoe has grown up being able to see how he has overcome the everyday
challenges that a neurotypical person would not think twice about. From her exposure of growing up with Luka and seeing how he navigates his life, Zoe wanted to portray the idea that a-typical does not mean abnormal. And that it is society that has created an environment where a-typical people are left feeling uncomfortable and abnormal. Zoe described her film as wanting to convey autism with a positive outlook, by focusing on the gift this disorder provides and neglecting the negatives. Her animation was intended to advocate for a group that does not have the social capabilities to express their struggles.
As Luka’s sister, she felt a responsibility to deconstruct his autism in the hope that those who viewed the film will reconsider their own knowledge and understanding of the autism spectrum. As Luka’s sister, Zoe has witnessed his Asperger’s and understands it at a higher level than most people. She has gotten the chance to watch him grow into the beautiful boy he is. “Throughout the years I have noticed how doctors and people around him would often focus on the negative parts about his autism, saying Luka lacks social interaction, he is ‘weird’, and has behavioural problems,” she said. But this is not how Zoe feels, or sees, her brother. While she believes his autism may cause some of these aspects to be more prominent, it also impacts his life in significant and positive ways.” Luka has a photographic memory and an amazing sense of humour.” This film also resonates with Zoe on a personal level. She has experienced a variety of learning difficulties, including dyslexia. She always felt that doctors and tutors would focus on the hardships of these difficulties and said things like: “You’re not capable of finishing high school.” Doctors also made similar comments about Luka, but Zoe is confident that he will graduate, and part of that reason is because his autism brings so many gifts that society choose not to acknowledge. Zoe chose to make this film to prove what both she and her brother can do because of their abilities. Entries for this year’s festival close on July 30, 2021. Go to: www.focusonability.com.au or for more information visit: firstname.lastname@example.org
Finding the Dane’s story
ane Peterson’s story is a great example of how a personalised approach can help change a life. The young Brisbane job seeker was experiencing major social anxiety when he first came to MatchWorks in 2018. Yet, with patience and understanding from his employment team, Dane has found happiness and ongoing work at Coles. “Sometimes, we would only get a few words from Dane at appointments,” MatchWorks employer solutions consultant, Wayne Delamont said. “He would isolate himself at home and could go weeks without communicating with anyone. “After many conversations, we were able to understand that Dane was a very caring and compassionate person, and craved acceptance within society.” Building trust was a key part to helping Dane move forward. Over time, he felt comfortable to open up and set some job goals with the team. “Dane’s main goal was to work in a customer service role, so we helped him enrol in a Certificate III in Retail
to face the world:
and he was a standout student in the course,” Delamont said. In addition, the team helped Dane: • Prepare a resume that got him hired • Build his interview skills • Gain new job searching techniques Yet, the real turning point came when he attended the Confidence is Key Workshop facilitated by MatchWorks project coordinator, Lisa Bowers. “The transformation we witnessed from Dane was nothing short of a miracle,” Bowers said. “He developed the confidence to face the world and hasn’t looked back.” According to Dane, the collaborative team approach made the biggest difference to his experience. “The journey we went through was exactly what I needed to find the right job for me,” he said. People were understanding and friendly, providing direction without being overwhelming. Wayne personalised the experience so the course was tailored to my personality and requirements and Lisa had the
Wayne Delamont with Dane Peterson
exact skill-set that would help me make decisions to find work.” He said because his role involves minimal social contact, it suits him very well and he enjoys the environment he works in. Dane shared that a stable job and less pressure is helping him live a more peaceful and tolerable life. “It means when there are bumps along the way, the stress doesn’t reach meltdown point like it used to.”
Connect today, change tomorrow. LET’S WORK TOGETHER TO FIND A JOB Is a health condition, injury or disability impacting your ability to work? At MatchWorks, we believe you can overcome any obstacle. When you choose MatchWorks as your Disability Employment Services provider, we work with you to find and reach your job goals. Together, we’ll get you working. P: 1300 13 23 63 W: matchworks.com.au E: email@example.com
How author and ‘Ask the Aspie’ founder
Kathy Divine does it all
athy Divine is a busy woman. As well as the author of six books, founder and editor of Australian Vegans Journal magazine and a qualified dog massage therapist, she also coaches first-time authors on how to publish their books easily and successfully. If that wasn’t enough, she runs a blog and, through social media, has crafted a profile for herself as ‘Ask the Aspie’. Kathy is diagnosed with Asperger’s syndrome, as well as Chronic Fatigue Syndrome and EhlersDanlos Syndrome. So, how does she do it all? “I have great support through Mable which is a website and app that enables you to find support workers yourself,” Kathy said. “Since discovering it through NDIS Facebook groups, I’ve built a team who help me with cleaning, transport, social and community participation and I’ve also got workers who help me achieve my work goals.” Kathy was able to directly connect with and engage independent support workers in her area, having refined the search criteria to suit what she was looking for. “I found someone to teach me how to edit YouTube videos for my Ask the Aspie channel and I’ve also learned design skills for my magazine publishing. My support workers also accompany me to events where I sell my books and magazines.” With the right support, Kathy said she feels confident to go out into the community and say yes to opportunities as they present themselves. “Mable has been an absolute game changer for me,” she said. “It’s so flexible and gives me genuine choice and control. I choose my workers and negotiate the terms so it’s an all-round collaborative platform.” Mable’s smartphone app means Kathy always has access to the platform wherever she goes.
“Both the website and the app are easy to use and navigate. That is important to me as it saves energy for living life to the fullest. With the app, access to Mable is right there in my bag so if something comes up and I need to book a session at short notice, I can get onto it without delay.” For Kathy, being able to choose and vet her own support workers has been important. She admitted that she needed to feel confident and comfortable with anyone who came into her home. “Mable screens every support worker with police checks and reference and qualification checks before they can start working with clients. Plus, because I get to choose my own workers and meet them before I agree to work with them, either in person or via a video call, I get to make an informed decision.”
Having experienced Mable from the client’s perspective, Kathy identified an opportunity to become a support worker herself. “I actually offer social support to Mable clients via Zoom and phone. As a lifestyle coach with a passion for helping people with disabilities, I understand potential challenges and I am good at brainstorming solutions. I specialise in helping people with autism, Asperger’s, Chronic Fatigue Syndrome and Ehler’s Danlos Syndrome as these are my own lived experiences.” Kathy said that from either point of view, Mable is an affordable option. “Compared with traditional support providers, clients pay less and support workers earn more so in my case, I appreciate it from both perspectives. Mable has become an essential part of my life and I love it because it enables me to live my life on my own terms.”
Choose from 1,000s of independent disability support workers. At Mable, we make it easy for everybody to find support workers they truly connect with. No matter what type of hobbies, interests or passions you have, you’ll find people who share them. And who are happy to share their experiences and their expertise to help you achieve your goals. Better still, you agree the services you need, when you receive them and how much you’ll pay directly with the support worker themselves. It means you could end up with more hours of support than with other providers. So, if you want real choice over your NDIS support, sign up to Mable for free.
Could telehealth be the answer?
ovid-19 and the acceleration of telehealth in the healthcare system has made its way into some local research that has the potential to deliver efficient screening for autism, according to Flinders University Professor of Psychology, Robyn Young. Young is working with US researchers who have been screening young people with autism through telehealth, unable to conduct face-toface meetings during the pandemic. “Getting the initial screening done via telehealth, especially if the person lives remotely, is making us think outside the square which is probably one good thing to come out of Covid,” Young told Link. By doing the interview in the home, clinicians can see the interaction between parent and child that gives more ecological validity
under these conditions which are different to face-to-face in the clinical environment that can sometimes hinder evaluations. Young has been conducting a small trial in Australia as part of the research with the telehealth interview component which she hopes will continue. “Parents sometimes cannot get the child to come in for an assessment, particularly adolescents, who often don’t want to talk or see anyone.” However, she said, adopting this model has not yet been formally accepted. “People have to be supportive of this diagnostic process and for it to be approved, from a research perspective we have to make sure we are getting the same results through telehealth as face-to-face. “What the US model revealed is that less complicated assessments
can be referred faster, particularly with young people, and we know the earlier the intervention starts the better the outcome.” She said this research is also being done in Europe, the UK and China. Young is also investigating people with autism and their interactions with the criminal judicial system. The four-year ARC funded SA project will focus on how people with ASD may become inadvertently involved in crime due to manipulation or naivety. In addition, the team at Flinders University which includes persons with lived experiences, is considering the possibility that ASD individuals received unfavorable treatment within the criminal judicial system due to a lack of understanding of ASD in this jurisdiction. For example, common ASD behavioural characteristics such as lack of affect may be perceived as showing no remorse, and avoidant eye-contact can lead to perceptions of deception leading to ASD persons being disadvantaged in their interactions within this system. Read more about autism from Professor Young on page 18.
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FACE TO FACE EXPOS RETURN IN 2021 Well, what a year 2020 was! Last year saw us all having to innovate in the way in which we communicate and obtain information. In the face of the COVID-19 pandemic, the usual practice of attending large scale events such as Expos was temporarily put on hold, and instead, the first ever virtual disability expo was held in September, hosted by Social Impact Institute. This year our face-to-face expos will return! The unique expo format, which has over one hundred exhibitors providing a one-stop shop for those who are on the hunt for information, products and services for people with disability and their carers, will be back in a COVIDsafe way. The practices we have all become familiar with – physical distancing, hand washing, extra cleaning, crowd management, health questionnaires and contact tracing will all form part of the COVIDsafe practices you can expect to see at this years Social Impact Institute disability expos. “People come to expos to find out how to utilise their funding to enhance their lives in meaningful and practical ways,” says Social Impact Institute Senior Advisor Kathryn Carey. “At the Expos it’s all here in the one place and you can ask real questions from real people in real time.”
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Another brilliant step for – Autism SA making a difference
hristian made a somewhat unexpected arrival into the world. Born at only 24 weeks, he spent the first three months of his life at the Women and Children’s Hospital, much of it in intensive care. As a consequence his development continued to be closely monitored by health professionals, and this is what led to Christian receiving an early diagnosis of autism at about 3 years of age, something for which his mother Sarina is very thankful. “That's why it was picked up so early,” she said. “And I am so, so grateful, because I am a firm believer that with autism, the earlier it gets diagnosed the better outcome for the child and for everybody else.” The family began receiving support from Autism SA before Christian started school, where he attended speech and occupational therapy sessions to develop his communication and social interaction skills. The support continued once he started at kindergarten. Members of the Autism SA team worked in partnership with kindy staff to provide guidance on the best ways to support Christian in his development.
When Christian began primary school, the team met every term with school leaders and teachers to help develop a modified curriculum for Christian and observe him in the classroom. This support was vital and without it, “he could have easily fallen through the cracks,” recalls Sarina. Sarina and Christian reconnected once more with Autism SA at the end of his schooling. Since that time, Christian has received one-on-one support with the Psychology, Behaviour Support and Counselling team, and from two regular support workers who have assisted him with his independence. He has been an enthusiastic participant in its school leaver employment support program, Next Step, which is a skill development program for school leavers and young adults looking to take the ‘next step’ in enhancing their social and life skills, including becoming work-ready. Being part of this program has been transformative for Christian, according to Sarina. “Christian is very social which, in a lot of ways defies the autism traits.” The Next
Christian & Sarina
Step program has been invaluable in helping him to develop a social network. It’s also enabled him to develop a greater sense of independence when it comes to functional skills like taking public transport and being able to get around the city on his own. “I really can't thank them [the Next Step team] enough for everything they've done and how they help these kids to develop and grow.” Christian now has an 18-month contract at West Torrens Library as a Library Support Officer, a position which began in May 2020, working three days a week. “I believe with my whole heart that the early intervention program that we attended with Christian at Autism SA was the building blocks for him to go on to achieve the life that he has,” said Sarina. “And I think Autism SA will always be in our lives and in Christian's life in one form or another.” Take your next step with Autism SA. Join us for a new experience at our state-of-theart Southern Hub in the Tonsley Innovation District.
Welcome Join us for a new experience at our state-of-the-art Southern Hub in the Tonsley Innovation District. Contact us for more information about our great range of services and supports. 301 Tonsley Boulevard, Tonsley autismsa.org.au – 1300 288 476
etting enough clinicians to diagnose autism has become problematic as there are not enough clinical psychologists out there qualified to do so, according to Flinders University Professor of Psychology, Robyn Young. In an interview with Link, Young said National Guidelines (www.autismcrc.com.au/access/) are currently under consideration to recommend that following a medical referral, clinical psychologists would be the first point of call for Autism Spectrum Disorder (ASD) assessments. If the matter was complex, other allied health professionals may be involved. Professor Young is concerned that without the training of more professionals this will increase waiting lists even more dramatically. “It comes down to getting a standard protocol around making a diagnosis, what it will look like and what needs to be done. Training people, irrespective of background to ensure there is some uniformity and clarity in that diagnosis,” she said. “I recommend triaging these diagnoses because some people are easy to diagnose when their condition is quite readily apparent whereas, in others where the condition is not evident, it can take a lot of time to tease out that diagnosis, particularly if there are other co-occurring conditions such as trauma or attachment issues.” According to Young, that while important, the diagnosis is not as important as the intervention because anyone who has met someone with autism is aware that one person with autism can be very different from another person with autism. Some people may require support, some might not, and the level of support required can vary dramatically between people. “it is important to identify the strengths of the person, the areas where they are having difficulties and how to support them, so these difficulties are not impacting on their life.”
Professor Robyn Young
Call for uniformity in diagnosis of ASD In her opinion the risk when you work from a diagnostic model leads to working towards the diagnosis and not the individual which she described as “dangerous.” “The sole purpose of diagnosis is clarity and understanding and for many that diagnosis is met with relief. They may have been mis-diagnosed with other conditions and we see this particularly in females who may have been diagnosed with obsessive compulsive disorder or borderline personality disorder, sometimes erroneously, where the diagnosis of autism can be overlooked.” Recent studies with clinicians revealed females will camouflage and mask their behaviour whereas boys might be acting out or do something
that creates attention. “However, girls, and this is a very broad generalisation, will either not do that or see how other people behave and copy that behaviour, which becomes more scripted for them and hence the diagnosis may be missed.” Prevalence is more common amongst boys although Young said there has been an increase prevalence amongst girls in the past decade. “Interestingly women in their 30s and 40s who have children on the spectrum are coming forward, looked at themselves and said: ‘this explains me a bit’. The diagnostic situation is not going anywhere as the more hurdles that are made around diagnosis and the requirements, such as costs, brings with it a reluctance to participate in the process both by professionals and consumers, she said.
New restrictions apply with the NDIS
The introduction of the National Disability Insurance Scheme also introduces another set of issues, placing restrictions from who the NDIS will accept diagnoses. Young said some people who have been diagnosed pre-2013 are now required to have an updated diagnosis using the new DSM 5 criteria, even though the DSM 4 criteria clearly states if you have a pre-existing diagnosis of a pervasive developmental disorder using the old criteria, then the diagnosis of ASD should be applied. But now people are being asked to present with an updated diagnosis, from a clinical psychologist: “which is expensive and clogs up the system because you have people coming in wanting their diagnosis updated when they possibly don’t need it. Instead, the time would be better spent in assessing the capacity and needs of the person – not their diagnosis per se. The NDIS should be responsible in deciding requirements and not sending people back to get a diagnosis.”
Early Childhood, Early Intervention is KEY
he early years of raising a child can be some of the most challenging, particularly if your child has additional needs. A diagnosis such as Autism Spectrum Disorder (ASD) brings new complexities for families, who might not know where to turn to for the best supports to meet their child’s needs. Many families can experience feelings of overwhelming grief. It is also common to experience social isolation, stress, and financial burden. But you are never alone. There are supports available for your child and for your family. If your child is not diagnosed but you have concerns about how they are developing, it is important
to speak to a trusted medical professional. Often the first step is to speak to your GP for a referral to a developmental paediatrician. Once you have a diagnosis, be sure to access the NDIS, and connect with a service provider which offers your family the support you need. Service Providers such as AEIOU Foundation work closely with the family unit, ensuring parents and carers have access to practical support and individual advice. Early intervention should commence as soon as a child is diagnosed, with trained professionals from both therapy and education backgrounds who can work together to provide a
Link to...Autism coordinated approach of support. The early intervention programs provided by AEIOU help children overcome the disabling aspects of autism, develop independence and confidence and foster inclusion. The goal is to ensure every child is supported to live their best lives. While each child will receive an individual plan, which is developed in partnership with their parents, there is generally a focus in areas such as communication skills, self-help skills, social skills, fine and gross motor skills, and pre-academic skills. AEIOU Foundation operates 10 autism-specific early intervention centres throughout Queensland and in South Australia, with an 11th centre due to open in Canberra in late 2021. Now in its 16th year of operation, AEIOU enrols more than 300 children throughout the service each year. To find a centre near you visit: firstname.lastname@example.org To access support while navigating the NDIS in the early years of an autism diagnosis call: 1300 273 435.
Early intervention and care for children with autism Our caring, professional teams deliver speech and occupational therapies, and positive behaviour support, to help children with autism develop skills to live their best lives. We have centres in Queensland and South Australia, with our first ACT centre to open in July. To find out more, call 1300 273 435 or visit aeiou.org.au. Advertisement - 182mm x 120mm.indd 1
4/03/2021 4:06:32 PM
asmine is walking home from school with her mother. She carries her backpack and is holding her mother’s hand. Jasmine's eyes seem to be on her shoes. She is happy to be with her mother and her mother is happy to be with her. As they walk, another girl her age runs by and says, “Bye Jasmine”. Her mother stops and asks, “Did you say goodbye?.” Jasmine nods, her mother is not sure, this is not the first time she has noticed Jasmine ignore the greetings of other girls on the way home from school. She knows her daughter likes her friends. At that moment, Jasmine says, “Sometimes, I don’t know what to say.” As they continue talking, her mother learns that Jasmine finds it hard to ask friends to play and is often worried about saying the wrong thing or “upsetting them.” The moment above, describes how the symptoms that are associated with autism may look in girls. Confused? On the surface, Jasmine’s social interaction could be attributed to shyness or a lack of confidence when socialising with other girls at school. Have a look at the following list of signs and symptoms of autism in girls: • Frequently described as shy • May be hesitant to express their ideas or rely on friends or others to speak on their behalf • Has difficulty making friends • Experience intense sensory reactions, such as resisting certain food textures or sensitivity, to certain temperatures • Find it challenging to regulate emotions and feelings of anger or frustration • Has special passions or interests. On the surface, these symptoms do not seem connected to our traditional view of the challenges faced by individuals with autism. Parents, paediatricians, psychologists and educators may not consider autism when observing these symptoms in girls leading to misdiagnosis. The ability of some girls to manage these difficulties through scripted speech, and by learning to imitate the actions of others, can
An approach to diagnosis that is inclusive of girls too! By Olivia Kara olis
further hinder their diagnosis and impact the quality of their lives. Many girls may experience depression, anxiety, low self-esteem, health issues and a feeling they do not belong (Why Many Autistic Girls are Overlooked, Child Mind Institute, 2021). Girls with autism, are more vulnerable to bullying and being excluded by their peer group. It is important that they are supported to learn the skills necessary to navigate complex social situations and interpret the behaviour of others. Australia is one of the few countries in the world to adopt a National Guideline for the Assessment and Diagnosis of Autism Spectrum
Disorders (Autism CRC, 2018). Professionals working with these guidelines should understand the different ways that autism may influence girls and ensure that girls and their families have access to early intervention. Intervention that can support girls and her family in understanding neuro diversity and celebrating her difference. Dr Olivia Karaolis teaches at the University of Sydney Faculty of Education and Social Work. She was Adjunct Professor, Faculty of Early Childhood Education, Santa Monica College, California. For further information visit: www.yellowladybugs.com.au/
Australia’s first national autism directory
f you are a carer or parent of a child with a disability, spending hours on the internet looking for supports is an all too familiar story. This is exactly what Anita Aherne did when her child was diagnosed as autistic in 2015. “It was frustrating because I had absolutely no idea where to look for support,” she told Link. After the diagnosis the child’s psychologist handed her the report and a list of three websites to look at. Put simply it was not enough and she ended up spending hours searching for information about autism on the internet. That’s when she decided she had to make the journey easier for parents and carers by developing and funding
Link to...Autism Australia’s first national autism directory, Kids on the Spectrum. She could not believe that a national autism directory did not exist. On reflection, Aherne said she now knows why: “Because it was hard work, hours and hours of research, time and money, but the effort has been worth it.” “Looking back, I could have supported my child so much more if I had known more about autism and where to look for supports.” This was one of the driving forces into her building the directory which has the support and guidance of autistic individuals and Ahearne herself is neurodivergent. The directory is not only about locating services, she wants to educate others about autism culture and the Kids on the Spectrum social media pages support autisticrun businesses and organisations. There are now over 450 businesses and organisations listed in the directory, from employment to sports clubs and the list of services grows every day. Kids on the Spectrum is
structured as a social enterprise, meaning it is free to use and every organisation receives a free listing. It is funded by those organisations who choose to upgrade their listings by adding web links, pictures and videos. “The response has been overwhelming, parents and carers love the fact they can now learn about services to support their children, and businesses have a dedicated platform where they showcase their services and products.” The directory has over 1200 visitors per week and the social media pages now has a community of over 9000 people, proving it is a much needed and used resource. You will be able to see Aherne and the Kids on the Spectrum team at the upcoming disability expos at the Sydney International Convention Centre, Darling Harbour April 10 - 11 and at the Melbourne exhibition centre May 1 - 2. You can check out the Kids on the Spectrum – Australian autism directory at: www.kidsonthespectrum. com.au
Daichi Jose, Jessica ( STEPS trainer), Samantha Grace, Jessica Finn, Corey Burke, Trent Cain and Josh Harvey
A second chance at a
Samantha Grace tells Link about her late-life autism diagnosis
s we begin Autism Awareness month, people like Samantha Grace remind us about the importance of raising awareness of the great spectrum of autism. Currently 27-years-old, Samantha did not receive an autism diagnosis until last year, after her mother pushed for a doctor to assist with Samantha’s difficulty in connecting with people. What followed was a referral to a psychologist and then a psychiatrist who delivered the news that she might have autism. While Samantha’s diagnosis was a relief and helped make sense of a lot of things, she found her new world of support hard to navigate, made even more difficult as most places seemed to be catering for younger people. Samantha joined the STEPS Pathways College day program last year and was recently accepted as a boarding student where she will be able to live on campus and attend
daily classes aimed at promoting her independence. Through the immersive experience, she will be able to practice her social skills 24/7 and begin experiencing what an independent life looks like. She is also looking forward to developing skills which she felt were underdeveloped during her school years, specifically social, budgeting and cooking. And it is cooking where she has excelled and not surprisingly it is her favourite class. “I’ve been wanting to learn how to do food preparation properly for ages and was going online but all the recipes were complex and involved a lot of multi-tasking,” she said. All she needed was someone to take her through it and that is when college cooking teacher chef Brendan stepped in. “Samantha has shown great progress in her teamwork skills and
learning to work with others and while she has only been with us for a short time it’s great to see what a difference it has made,” he said. Samantha believes if her autism had been picked up earlier it would have helped her with many things. “When I was younger, I was doing things differently or wasn’t doing things the right way, but I was never taught in a way that made sense. Some people would call me lazy so I’m glad we finally figured it out.” Samantha got through the mainstream schooling system but without the diagnosis did not receive the help that she needed. Beyond the expansion of her skills, Samantha has a short-term goal to get her drivers’ licence. Long term there are two; writing – “I would probably write fantasy novels,” or working in data entry at a museum, or anywhere she can work alongside her love of history.
Do we need to flip the script on ?
ver the past eight years working in the South Australia disability sector, Autism Advisory Adelaide, developmental educator, Stephanie Baker has seen a lot of progress in the autism space as more people come forward and speak about their personal experiences with the condition. “I like nothing more than reading about someone who flies in the face of stereotypes, because everyone with autism does to a degree,” she told Link. “Natural human variation doesn’t stop when you have autism, and I think the wider population is starting to recognise this.” But with this growth in acceptance and perception, there is also room for improvement in how capacity building for people with autism should be viewed. “From the very beginning of my career, social skills training has been presented as ‘the be-all and
end-all’ to achieve more inclusion for people with disabilities, but I do think we need to flip the script. “Perspective taking is something we can all do better, but social skills training implies that autistic people are somehow flawed, based on a deficit model and old rhetoric. What we need to do is encourage everyone when they are young about the importance of inclusion and motivating people to come forward and share their true experience with autism. Breaking stereotypes is necessary to achieve any meaningful inclusion,” she said. Baker said having autism has benefited her to understand what needs development in the field. “Some people with autism come to me and express how other people may appear confusing to them and want assistance with understanding their point of view. Others don’t
Link to...Autism and can navigate the world just fine without any intervention. Both of these experiences and viewpoints are okay, as long as they come from the perspective of ‘I am doing this for me, and not because others think I am deficient’”. According to Baker, everyone has differences in how they experience autism. “Self-love and acceptance are most important because time and again I see people stripped of their confidence because of their experiences in the world. Don’t let others try to tell you that you are inherently less worthy because you are autistic or let them convince you that some part of your personality needs intervention simply because you are neurodivergent.” Her message is clear: “Know yourself and respect your strengths. Work with them, self-advocate and gently educate others if you feel they are viewing autism as a deficit. I promise you will be much happier when you learn it’s not only okay, but wonderful to be you’’.
Developmental Education We are a specialist provider of capacity-building supports to children and adults on the Autism Spectrum. Let us help you inperson or online to achieve your maximum potential. www.autismadvisory.com.au Phone 0411 499 020 /AutismAdvisoryAdelaide
self-competence. self-advocacy. self-regulation.
ack Rutherford is an Aboriginal boy, who is also an autistic savant, Jack presented with hyperlexia at 2 years 5 months, just after learning to talk and has been described as having an eidetic memory. He is fluent in Spanish and can translate conversational Spanish in real time and is now challenging himself to learn Mandarin to catch up to his new classmates. Jack has wanted to travel to China since he was 4 years old to see the Terracotta Soldiers (Army), the Great Wall, the Forbidden City, the Giant Pandas in their natural habitat and Disneyland in Shanghai and Hong Kong. Jack told Link languages with alphabets are easier to work out but languages with characters are harder. He loves science, history, words and grammar and has read every Horrible History, Horrible Science and Horrible Geography. And he also loves FACTS. Nothing beats a fact for him and not surprisingly has read the Guinness Book Of Records and Ripley’s Believe It or Not books. He especially likes that his school cares about how he feels and wants him to do everything everyone else does and help him to do it. He also likes his new classmates, teachers and that his brother goes to the same school. Jack enjoys watching TV series and his favorite shows are Avatar: The Last Airbender and Pokémon The Series: Sun & Moon but he’s also watching season one of Tales By Light on Netflix. He gets ideas for short stories and types them up on his iPad, ‘The Child Within The Shadows’ (see box) was his last story and he is currently working on one called ‘Opposites Attract While Worlds Collide’. He does not like theme park rides because he needs to hold on and it hurts his hands. Jack wants people to know that some people have bad anxiety, and they need to understand that anxiety can make normal things that everyone one does each day can be hard for people with anxiety to do, and he is one of those people. Having to be brave every day is something he has to do and some days it’s very hard and these are the days he has to be “extra brave”.
– As told to Kymberly Martin
Jack’s ambition is to be a gaming software developer, but he also wants to see change in the world. “I don’t understand why we live in a world where people should just listen to the science and stop harming the earth, stop animal farming, stop mining, stop polluting but they shouldn’t
need science to say it, they should just feel connected to it and not want to hurt the earth. All schools should ban glitter, these are micro plastics and harm our marine and bird life. Little steps change the world; like not eating meat once a week has a big impact on climate change”.
The Child Within The Shadows One sort of time a boy, an unusual boy with an unusual name discovered he had an upside-down shadow. His name was August Moon. On a cool September night, August Moon saw his shadow luring him to follow him into the shadows. August followed his shadow to an upside-down house, that had a glow in the dark door. Both opened the door together. August gasped, his shadowed mimicked him. There inside he saw a skeleton dog, named Esqueletanio. August softly spoke, "hello, come here boy, I won’t hurt you". Esqueletanio responded,"Hola, mi amigo. Me llamo Esqueletanio." August Moon was a boy who had no friends because he was different and the only boys who approached him were the ones who came to bully him. August Moon was black, but his skin was fair. August Moon was Aboriginal but his skin was just tanned. It wasn't dark, but it doesn't have to be to be Aboriginal. This night one thing changed for August in this moment, he now has a friend named Esqueletanio. It didn't bother August that his new friend was a talking Spanish skeleton dog, he was just happy he had a friend. It did not bother Esqueletanio that August was a boy and he soon learned August loved to learn, he loved facts, loved history, loved to read but the best thing was August spoke Spanish, so August understood him. To be understood by someone is the most important gift you can give someone. By Jack Rafael Harris Rutherford.
When Fit meets
aving fashionable shorts and shoes has opened up a whole new world of independence for 9-year-old Jack Rutherford. Jack who has autism and a compromised immune system has never been keen to dress himself, struggling with buttons, zips and shoelaces, that made self-dressing difficult. That was until he was given Appaman Dockside shorts and a pair of Billy Classic High Top canvas sneakers. According to his mother Elisa, Jack found the Velcro closures and pull-up loops on the shorts easy to put on and he was able to easily unzip the toggle grip on the shoes. After a request from EveryHuman, local distributor of the adaptive clothing and footwear range, for feedback from Elisa about other disability friendly clothing that would
Jack Rutherford and his Billy Classic sneakers
help Jack, they will be sourcing the family lip reader face masks which will help Jack with immunity and lessen the communication issues that come with full face masks, and also help with their daughter who is profoundly deaf. Jack has just started at his local primary school, which Elisa described as “amazingly inclusive with its mainstream environment,” where Jack has joined seven other wheelchair users. “Jack’s Billy sneakers look just like a well-known and popular brand at school to the other kids, but they are better. Inclusive is always better,” she told Link. Jack has three siblings, including two sisters who have Down syndrome, and the 14-year-old has also discovered the Billy High Top sneakers that enables her to wear stylish shoes like most teenagers her age.
The Ultimate Shopping Experience For People With Disabilities.
Mental health conditions prevalent in children with autism
early 78 per cent of children with autism have at least one mental health condition and nearly half have two mental health conditions or more, according to a new US study. The study also found mental health conditions present in 44.8 per cent of pre-school age children with autism. The scope of the issue among that age group had not previously been established using a large, population-based sample. By contrast, only 14.1 per cent of youth without autism, ages 3-17, had mental health conditions. The study from the University of British Columbia's department of psychology and the AJ Drexel Autism Institute at Drexel University (Pennsylvania), is the first research since 2008 to examine the prevalence of mental health conditions among children with autism at a population level and signals a need for healthcare systems to adapt to account for the overlap. "For a long time, mental health in kids with autism was neglected because the focus was on autism. There's much greater awareness now, but we don't have enough people trained to provide mental health treatments to kids on the autism spectrum," lead auth of the study, Dr Connor Kerns said. “We need to bridge these two systems and the different sets of providers that tend to treat these children."
Autism inherited from fathers more than mothers
iomarkers in human sperm have been identified that can indicate a propensity to father children with autism spectrum disorder. In a study published in the journal Clinical Epigenetics researchers identified a set of genomic features, called DNA methylation regions, in sperm samples from men who were known to have autistic children. Then in a set of blind tests, the researchers were able to use the presence of these features to determine whether other men had fathered autistic children with 90 per cent accuracy. "We can now potentially use this to assess whether a man is going to pass autism on to his children," study author and Washington State University professor Michael Skinner said. "It is also a major step toward identifying what factors might promote autism." Incidence of autism spectrum disorder has increased dramatically and while improved diagnosis and awareness can account for some of that change, many researchers believe the recent increase over the last two decades may be due to environmental and molecular factors. Previous studies have also shown that children can inherit the disorder from their parents and fathers are more often linked to autism transmission than mothers.
Keep up the physical activities
recent study from Oregon State University found that to best help kids with autism maintain healthy rates of physical activity, interventions should be targeted during the ages of 9 to 13, as that is when they show the biggest drop in active time.
The study is one of the first to look at this issue on a longitudinal scale. It relied on a dataset of families in Ireland spanning three in-depth interviews between 2007 and 2016. Kids in the survey had their first interview at age 9, the second at 13 and the third at 17 or 18.
International News Briefs The OSU study compared 88 children with autism to 88 children without autism over the nine-year survey period to gauge both how physical activity changed over time, and how much screen time spent on TV, movies, videos and computer and video games, children reported over time. While there was not a statistically significant difference in screen time between kids with autism and kids without it, there was a marked disparity in the amount of physical activity, especially in adolescence. At 13, youth with autism reported only one or two days of moderate to vigorous physical activity in the previous two weeks, compared with nine or more days among youth without autism. The decline continued through the teenage years: At 17/18, most adolescents with autism participated in zero days of physical activity, compared with six to eight days among youth without autism. Participation in light physical activity also declined among youth with autism at age 13, although by age 17/18, participation rebounded, and there was no major difference between the two groups. Study author, associate professor Megan MacDonald said healthy, physically active kids are more likely to be physically active adults. "Also, the independence that comes with physical activity. For some children with autism, maybe parental supervision is high and there isn't as much time on their own, so it's opportunities to experience that in safe places while they're developing and growing," she said.
Why is great for people with intellectual disability
Endeavour Foundation supported employee, Cara cooking at home using recipes from the Thrive Learning program
f ever there was a time to embrace online learning, this is it. In 2020 at the height of Covid restrictions, Endeavour Foundation had to temporarily close some of its services and that meant a change in routine for many of its customers. Not wanting them to miss out on learning opportunities Endeavour developed the Thrive Learning program a free, online resources specifically designed for people with intellectual disability. Even though the program has not been up for long, it has resulted in impressive feedback. So why is it that online learning is so popular for people with intellectual disability? It’s on your terms and works in with your routine. Routines are important to everyone, whether you have a disability or not. They help you manage your time and get things done that matter to you. Online learning programs can give a sense of achievement. They break things down into smaller, simpler steps so you
can learn new things without feeling overwhelmed. You can work through as many or as few steps as you like, depending on how it fits into your day. It’s normally cheaper than face-toface learning. Let’s face it, learning new skills in real life can be expensive – and that’s not even counting transport costs. Online learning has made learning new skills cheaper and more accessible than ever before. It helps improve tech skills. As a bonus, online learning also helps us learn more about using computers and other technological devices. By regularly logging into a course and following the steps, you are not only becoming fitter and stronger, or a better cook, but also a better tech-user.
For a limited time, Thrive Learning is being offered to all people with intellectual disability for free. With cooking, fitness and music courses available, there’s something fun for everyone. To learn more or sign-up visit: www.endeavour.com.au/ thrive-learning
Thrive Learning Free, fun and accessible online learning courses designed by Endeavour Foundation, specifically for people with intellectual disability.
Get started today at endeavour.com.au/thrive-learning
This unique virtual event is brought to you by APEX Mobility – a leading supplier of Assistive Technology (AT) equipment throughout Australia. It is a great opportunity for people with a disability, their families, carers and health care professionals to meet AT suppliers from around the world, and Australian AT equipment Dealers. APEXPO 2021 is a virtual expo with a difference! The unique feature of this event is that AT equipment is showcased in physical booths, supported by experienced Product Consultants who will be there in ‘realtime’, live-streaming with AT equipment on show for you to see and discuss. Attendees can also ‘walk through’ the Virtual Exhibition Hall from the comfort and safety of their home or ofﬁce. 100 different items of Assistive Technology equipment will be on display and available for Virtual Demonstrations. In the Virtual Training Auditorium, attendees will be able to access a wide range of training workshops and demonstrations. Plus insightful, practical information for equipment users and presentation sessions to help therapists improve their clinical knowledge and skills.
Thursday 29th & 30th April 2021 It’s FREE to attend but you will need to book your place by registering at www.apexpo.com.au Enter our lucky draw to win an iPad Mini 5. You will need to REGISTER and ATTEND APEXPO to be in the draw to WIN!
Link to...NDIS Sponsored Content
Injury more common in children with
recent study published in the Journal of Autism and Developmental Disorders found that children with autism are more prone to injuries than children in the general population. The most common types of injuries in children with autism include open wounds and fractures. 1 Whether it’s a cut, a graze, or skin tear it’s important to learn how to manage these at home while you seek medical attention if required. When it comes to cuts, the first thing to do is stop the bleeding, clean the wound and cover with a dressing. Often that’s all that’s needed.
For grazes, again stop the bleeding and clean out any dirt, debris or anything that shouldn’t be there. It’s important to select a dressing which will prevent bacteria from getting in and that it supports the wound healing process. Allevyn Life dressings help maintain an optimal wound environment. The unique quadrilobed shape with a wide border is designed to fit the contours of the body more securely. 2 If you’re worried about leakagedon’t be! The advanced lock-in technology reduces the chance of leakage helping it last longer than other foam dressings.
It is also waterproof which means that you can shower and wash as normal while the wound heals. 4 It even has a change indicator to let you know when you need to change the dressing, so you don’t waste time and money on unnecessary dressing changes. 5 For more information visit www. smith-nephew.com/anz/products/hith/ allevynlife/ This product may not be right for you. Always read the label and instructions for use before purchase. If symptoms worsen or change unexpectedly, talk to your healthcare professional.
www.ncbi.nlm.nih.gov/pmc/articles/PMC5920521/ 2020 ,DiGuiseppi, et al Injuries in Children with Autism Spectrum Disorder: Study to Explore Early Development (SEED) 2 Smith & Nephew data on file report OR-DOF 020 An open, prospective, randomised, comparative volunteer trial to compare the performance of silicone adhesive dressings. MepilexTM Border. 2 Smith & Nephew data on file report OR-DOF 041 An open, prospective, comparative volunteer trial to assess the retention qualities of ALLEVYN Life and BiatainTM Silicone. 3 Joy H, Bielby A, Searle R. A collaborative project to enhance efficiency through dressing change practice. J Wound Care. 2015 Jul;24(7):312, 314-7. 4 Smith & Nephew data on file report OR-DOF 011, Results from a multi-centre, non-comparative clinical in market evaluation of ALLEVYN Gentle Border dressing and from Open, prospective randomised, within volunteer comparison of Dakota and Mepilex Border in terms of showerproof and use on awkward areas. Hussein D; August 2010. 5 Simon D, Biel A. A structured collaborative approach to appraise the clinical performance of a new product. Wounds UK. 2014;10(3):80-87. 1
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◊ Trademark of Smith+Nephew. SN14922. Sponsor: Smith & Nephew Pty Ltd (Australia) www.smith-nephew.com/australia.Always read the label. Read the Instructions for Use before purchase. If symptoms persist see your doctor/healthcare professional.1. Simon D, Biel A. A structured collaborative approach to appraise the clinical performance of a new product. Wounds UK. 2014;10(3):80-87. 2. Smith & Nephew May 2016 2016. New ALLEVYN Life Gen2 wcl - Physical Testing. Internal Report. DS/15/025/R. 3. Rossington A, Drysdale K, Winter R. Clinical performance and positive impact on patient wellbeing of ALLEVYN Life. Wounds UK. 2013;9(4):91-95. 4. Smith & Nephew, April 2016. Wound Model Testing of New ALLEVYN Life Gen2 wcl Dressing using Horse Serum at a Flow Rate Modelling that of a Moderately Exuding Wound. 5. Smith & Nephew 20 June 2016. A Randomised Cross-Over Clinical Evaluation to Compare Performance of ALLEVYN™ Life and Mepilex® Border Dressings on Patient Wellbeing-Related Endpoints. Internal Report. CE/047/ALF. 6. Joy H, Bielby A, Searle R. A collaborative project to enhance efficiency through dressing change practice. J Wound Care. 2015 Jul;24(7):312, 314-7.
Nextt boosts NDIS services with industryfirst tech platform
extt, a leading provider of NDIS services in Australia, has launched the INDIE platform, an innovative system designed to help deliver a simplified and seamless service experience for its clients. Built from the ground up to be focused on individual client needs, INDIE captures the client’s goals and creates a summary on how effectively the support services offered by Nextt can be in helping the client achieve those goals.
INDIE covers the full client service process, from assessment, intake, agreement, booking, plans and reviews. The system gathers baseline data to track over time, while providing tools for ongoing quality management and review reporting. According to CEO, Mark Mulder, Nextt has a mission and that is to help clients get more out of life. “With INDIE, we now have simple, clear and consistent service procedures. These provide guidelines for our client
service staff and allows them to focus more on understanding their client’s needs and working together to achieve their individual goals. “The value of the Nextt INDIE platform is that it delivers a greater level of transparency. It will ensure our focus is on each client’s individual needs by working collaboratively with them, holding ourselves accountable for measurable results. If we can keep doing this, we can deliver better outcomes for our clients and help them to get more out of life,” he said. Currently, NDIS plans are reviewed after the first 12 months and every two years thereafter. However, circumstances can change significantly over the span of two years, and Nextt recommends that clients be more proactive in scheduling their own reviews and changing plans as those circumstances change. The Nextt INDIE platform was developed to help make this process easier, and support clients to monitor and assess their progress and circumstances on an ongoing basis. There are already over 200 clients on the platform and it is delivering meaningful outcomes for them, Mulder said. Nextt is a leading Australian provider of services with over 1800 staff and services across NSW, QLD, SA and VIC, providing quality support to more than 1500 clients each year.
Over the past 20 years Nextt have built a strong service that specialises in supporting people with a broad range of disabilities including autism, psycho-social disability, cognitive support needs, high physical support needs and acquired brain injury. Nextt has developed communities of practice to support staff and clients with specific skill and support requirements. Its focus is on personcentred active support to assist each person to get more out of life and become more independent.
Disability and Mental Health Support Provider Nextt is a leading provider of individualised programs and services that help people become more independent, meet their goals and get more out of life. With over 1800 staff and services across NSW, QLD, SA and VIC, we provide quality support to over 1500 people every year.
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To find out more, call us today. We’ll do our very best to help.
email@example.com www.nextt.com.au 1300 657 915
Get More Out Of Life 33 April/May 2021
Take to the road with new Kia models
reedom Motors has launched the Kia Carnival KA4, Hi-Tech New Generation vehicle to the popular Carnival range, just one of the new models the company is adding in 2021 to its 18+ other modified vehicles. This new Carnival offers a range of modification options from Family, Passenger, Self-Drive and Front Passenger to modifications for Taxi or Community Transport. The new design perfectly complements Freedom Motors Australia Modification, combining luxury and functionality in one
package for the ultimate in wheelchair accessible vehicles. The other new kid on the block joining the Kia small vehicle range is the Seltos (FWD) which the company expects will be another popular model in the range. The stylish and affordable design of this vehicle can be improved with a Freedom Motors Australia modification. The Seltos offers both Family Member and SelfDrive modification options. Freedom Motors works closely with its independent engineers to ensure traveling in these new vehicles
will be in complete safety, comfort and style. The Kia Carnival YP and Kia Soul have been two of the company’s most popular vehicles to modify to date, with over 550 Carnival YP's and over 1000 Kia vehicles modified Australia wide. In 2020 Kia discontinued the Kia Carnival YP model and in 2018 discontinued the Kia Soul. Call Freedom Motors Australia now on: 1800672437 to speak to one of our friendly mobility consultants for more information on both of its new vehicles or any of its modified vehicles.
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he ATSA Independent Living Expo’s in Melbourne and Perth in May will be a showcase of new product. Link has a sneak peek of what will be on display: The Q6 Edge 3 Stretto power wheelchair from Quantum Rehab, is claimed to be the narrowest, most manoeuvrable power base on the market, equipped with independent SRS (Smooth Ride Suspension), making it ideal for children, teenagers and small adults. Need an office/active chair? Check out WILA Products to see the VELA310E bariatric model available. WILA will also have the HandSteady drinking cup on display. Is turning over in bed difficult? Visit Sunrise Medical to check out the new Quickie Nitrum online visualiser – and turn energy into motion. Sunrise Medical also have the Quickie IRIS power tilt option on display that gives users more control over the position of their body in space and improves comfort by assisting with sitting tolerance. Drop by the RGK stand to experience the RGK Octane Sub4 that elevates the daily wheelchair to a whole new level of performance and engineering down to the finest detail. Permobil is also bringing adventure back with their new X850 wheelchair. Check out Invacare products at the DRP International stand including the new Aviva FX front-wheel drive power wheelchair that can tackle almost any terrain and the new Stand Assist lifter, designed to suit a range of users who require assistance during a transfer with dismantling easily done without tools. Merits Australia will have three new power chairs on their stand, including rehab power chairs, finished in bright paintwork and an innovative model that can be reversed from rear wheel drive to front wheel drive in a few seconds, complete with seat lift.
Preview the latest innovations at the ATSA Expos in Melbourne and Perth Magic Mobility are launching the Magic 360 Powerchair, claimed to be the only compact powerchair that's manoeuvrable indoors, robust enough for off-road and handles everything in-between. AstrisPME will have the Klaxon Klick Standard Power, Special Edition on wheelchair new level of freedom without compromising on the manoeuvrability of a manual wheelchair. Active Adaptive has recreated its popular seamless back trousers to suit both women and men and introducing leather bags, pouches for leg strap accessories, phone holders and more. Wild West Wheelchairs, importer of the Offcarr range will show the Alley Hoop adjustable basketball wheelchair - a new player in the wheelchair sports sector, Offcarr Friend - dynamic seating in a manual wheelchair and Offcarr Fixed – a three-wheeler manual wheelchair.
A message from ATSA executive officer, David Sinclair: “We are excited to be able to focus on the 2021 ATSA Independent Living Expos as it feels like a very long time since we last walked the expo floor or seen many of our valued members. The innovation and exciting new product development that the ‘gap year of 2020’ has allowed is truly remarkable and this year’s best new product award will be highly contested. The diversity in the seminar program is very encouraging from the practical to the informative and there is something for everyone. Due to Covidsafe practices seating is more limited than usual so remember to book early. To all our ATSA members, exhibitors, speakers, attendees and suppliers, thank you for your continued support. Remember to stay Covid-safe while enjoying face-toface interaction.”
Melbourne Education Program
Tuesday 18th May ROOM 1 9:00-9:30 standUP for Yourself! – Luke Meighan – Invacare Australia/New Zealand 10:00-11:00 NDIS Presentation 11:15-12:00 An overview of the standards, products and practices thatpromote safe restraint options for Australian children withdisability and medical conditions travelling in motor vehicles – Helen Lindner and Lisa Vale – MACA
ROOM 2 9:00-9:30 Electric Wheelchairs and Mobility Scooters In the Wild: Users’ Resilience and Innovation – Dr Theresa Harada, Research Fellow – University of Wollongong 10:00-11:00 Motorised Mobility Device use: Interventions to enhance user safety – Dr Marilyn Di Stefano – Road Safety Victoria
ROOM 3 9:00-9:30 Anatomy of a Wheelchair: Clinical Implications – Tina Roesler – Motion Composites 10:00-10:45 Understanding Vehicle Solution Assessments – Amin Akbarian – Mobility Engineering
ROOM 4 9:00-9:30 How do people actually use their manual wheelchairs and what really matters – Tom Whelan – Ki Mobility 10:00-10:45 A novel device to assist computer access and control for people with hand impairment – David Hobbs – Flinders University
11:15-12:15 Taking a Stand: Overcoming Obstacles to Improve Outcomes – Rachel Fabiniak – Permobil
11:15-12:00 Identification, Prevention and Measurement of Postural Asymmetry in Adults with Cerebral Palsy – Carlee Holmes – St. Vincent’s Hospital Melbourne And Monash University
13:00-13:30 Active Controls Center Drive; The Biomechanical Benefits –Lauren Hunter – Linds Rehabilitation Equipment
13:00-13:30 The Physical, Social and Psychosocial benefits of playing wheelchair sport – Wayne McNamara – Invacare
13:00-13:30 Let’s talk about toileting! – Emma Friesen – Raz Design Inc
13:00-13:30 Pediatric Power – Steve Seal – Quantum 14:00-14:30
14:00-14:30 Successful manual wheelchair assessment and prescription – It’s all how you configure it – Amy Bjornson – Sunrise
14:00-14:30 Restraint or Postural Support – An essential part of the solution or a safety afterthought? – Tracee-lee Maginnity – Permobil
14:00-14:30 Assistive Technology Peer Mentoring Program – Neil Berrick and Kate Martinez – ILA
15:00-15:30 Assistive Technology in Australia: an update from ARATA – Libby Callaway, President, ARATA
15:00-15:30 Manual Wheelchair Skills to Improve Safety, Efficiency and Accessibility – Curtis Palmer – Ottobock Australia
16:00-16:30 Mobile shower commode chairs and bidets / smart toilets – getting it right! – Emma Friesen – Raz Design Inc
15:00-15:30 The When, Why, and How of Paediatric Powered Mobility – Rachel Fabiniak – Permobil 16:00-16:30 The Power of Touch – Luke Meighan – Invacare Australia/New Zealand
11:15-12:00 Myth; Pressure mapping is only used to compare cushions – Dr Barend Ter Haar
TBC 15:00-15:30 How people with leg paralysis benefit from the latest KneeAnkle-foot orthosis (KAFO) technology – Vladislav Marek – Ottobock 16:00-16:30 Safe temperature showers made simple – Rob Pond – Therm-oz
16:00-16:30 Manual Wheelchair Scripting – Why Compromise Is a Good Thing – Curtis Palmer – Ottobock Australia
Wednesday 19th May ROOM 1 9:00-9:30 TBA – Tom Eley – OT Solutions 10:00-10:30 Wearable technology innovations for people with vision and literacy impairments – Stewart Andrews – Quantum Reading Learning Vision
9:00-9:30 Innovations in mobile shower commode chair design – Emma Friesen – Raz Design Inc 10:00-10:30 TBA
ROOM 3 9:00-9:30 Best practise guidelines for assessment and selection of rehab shower commode chair – Lois Brown – ILS Rehab, Catherine Young and Kim Vien – Royal Melbourne Hospital
11:00-11:45 How to Choose the Right Personal Alarm…..And get Nan to Wear It – Lance Stracke – Guardian Safety Pendants
10:00-10:30 Exploring Postural Care: A Family-Centred Practice for young Children with Physical Disability Clinical Instructional – Denise Luscombe – Postural Care Australia
13:00-13:30 Prescribing Dynamic Manual Wheelchairs for Function and Independence – Lauren Hunter – Linds Rehabilitation Equipment
13:00-13:30 Konnnekt captioning videophone; Incredibly easy to use for senoirs or disability, reduces depression risk – John Nakulski – Konnekt
11:00-11:45 Aquatic Therapy and Transfer Tips for Caregivers – Craig Slattery – Para Mobility and Kristen Kruse – AustSwim
14:00-14:30 Lessons learned from remote health monitoring trials during COVID-19 lockdown A new approach to transfer – Tim Carroll – HalleyAssist
14:00-14:30 Bariatric Seating and Mobility Considerations – Nick Reginato – ILS Rehab
11:00-11:45 OT’s Exploring Assistive Technology – Assessment, Prescription, Process and Funding – A panel facilitated by OT Australia
12:00-13:00 LUNCH 13:00-13:30 One switch, many devices, no problem – Emma Hughes – Zyteq 14:00-14:30 Navigating the NDIS assistive technology process: Case studies and panel discussion – Claire Fox – National Occupational Therapy
ROOM 4 9:00-9:30 Prevention, identification and measurement of postural asymmetry in children and adults with physical disability – Denise Luscombe – Postural Care Australia 10:00-10:30 When Innovation meets Best Clinical Practice: Introducing the New Explorer Mini – Rachel Fabiniak – Permobil 11:00-11:45 Proposed changes to the building code and the impact on the home – Jane Bringolf – Centre for Universal Design 12:00-13:00 LUNCH 13:00-13:30 Importance of the seated microclimate in skin protection, how much do we need to consider heat, moisture and humidity? – Amy Bjornson – Sunrise 14:00-14:30 Using the Allen Cognitive Disability Model to improve the efficiency of equipment prescription – Susan Pordage – Acdm Web
Perth Education Program
Wednesday 26th May ROOM 1 9:00-9:30 Getting It Across the Line: Tips for Clinicians Submitting AT Applications Through NDIS – Lisa Greene – National Occupational Therapy 10:00-10:45 Engaging in Eye Gaze: Supporting Communication, Education and Recreation – Tanith Brien – Indigo 11:00-12:00 Postural Care for Adults and Aged Care – Bas Jansen – Postural Care Australia
Thursday 27th May
9:00-9:30 Digital access: where we are and where we’re going – Dr Scott Hollier – Centre For Accessibility
9:00-9:45 Assistive Technology Standards Compliance and TGA requirements – Karthik Pasumarthy – Fiona Stanley Hospital
10:00-10:45 The Abstract and the Creative: Assistive Technology in NonTraditional Workplaces – David Vosnacos – Visability
10:00-10:30 AT to support intimacy – Narelle Higgins – Occupational Therapy Services Group
11:15-12:15 Taking a Stand: Overcoming Obstacles to Improve Outcomes – Rachel Fabiniak – Permobil
11:00-11:45 OT’s Exploring Assistive Technology – Assessment, Prescription, Process and Funding – Panel of three OT’s and a facilitator (TBC) – Occupational Therapy Australia
12:00-13:00 NDIS Presentation – TBA
13:15-13:45 Active Controls Center Drive; The Biomechanical Benefits – Lauren Hunter – Linds Rehabilitation Equipment
13:00-13:30 The Physical, Social and Psychosocial benefits of playing wheelchair sport – Wayne McNamara – Invacare
14:00-14:30 My technology journey – enabling more control of my life – Eleana Bredemeyer – Technology User and Maria White – OT
14:00-14:30 Restraint or Postural Support – An essential part of the solution or a safety afterthought? – Tracee-lee Maginnity – Permobil
15:00-15:30 AT Chat Assistive Technology Peer Mentoring Program – Neil Berrick and Kate Martinez – ILA
15:00-15:30 Complex mobility solutions for clients with neuromuscular degenerative disorders and high level spinal cord Injuries – Karthik Pasumarthy – Fiona Stanley Hospital
16:00-16:30 Dragon Naturally Speaking V Apple Voice Control: A Battle for Voice Control Supremacy – Lauren Farrell – Indigo
ROOM 2 9:00-9:30 Innovations in mobile shower commode chair design – Emma Friesen – Raz Design Inc 10:00-10:30 Assistive Technology and what it means to you – Doug Crockett – Intelligent Home 11:00-11:30 How to Choose the Right Personal Alarm. . .And get Nan to Wear It – Lance Stracke – Guardian Safety Pendants 11:45-12:15 Assistive Technology Trials: Optimising Outcomes for NDIS Participants – Jane Milne – Emprise Mobility
13:00-13:30 Prescribing Dynamic Manual Wheelchairs for Function and Independence – Lauren Hunter – Linds Rehabilitation Equipment
13:00-13:30 Aquatic Therapy and Transfer Tips for Caregivers – Craig Slattery – Para Mobility and Marlene Stevens – AustSwim
14:00-14:30 An overview of the standards, products and practices that promote safe restraint options for Australian children with disability and medical conditions travelling in motor vehicles – Helen Lindner and Lisa Vale – MACA
14:00-14:30 Bariatric Seating and Mobility Considerations – Nick Reginato – ILS Rehab
16:00-16:30 Safe temperature showers made simple – Rob Pond – Therm-Oz
*Correct at time of print, please check website for latest program
Free Seminar Program
REGISTER NOW www.atsaindependentlivingexpo.com.au
Tue 18 – Wed 19 MAY 2021 Melbourne Showgrounds
Wed 26 – Thu 27 MAY 2021 Claremont Showground, WA
So much to see and do at the ATSA Expos
ink asked Interpoint managing director, Simon Cooper, who has been running the ATSA expos since 2005, how final preparations for the May events were progressing and what exhibitors and visitors can expect to see. Across the globe exhibitions have been severely impacted by the pandemic. After March last year, 95 per cent of scheduled events were cancelled or postponed. Some transitioned into virtual events and as restrictions began to slowly ease, hybrid (face-to-face and virtual) events began to appear. According to Cooper initial feedback from these has been that people prefer the face-to-face interaction and there is already a reluctance from companies to go down this path unless it is purely conference or education related. “ATSA’s Independent Living Expos in Melbourne and Perth were swept up in the same postponement wave. It was not only suppliers that were affected, more than a 1000 allied health professionals and visitors had registered to attend. The expos were rescheduled twice and as the vaccines begin to be rolled out, confidence in attending events is returning, albeit under the new Covid-safe norm,” he said. Ed: In terms of the number of exhibitors, how have the shows in Perth and Melbourne been affected? SC: The Independent Living Expos are the largest displays of assistive technology (AT) in the country and Melbourne is the biggest. We have
been amazed by the strong industry support which is clearly testament to the respect the shows have with the industry. There were only two cancellations for Perth and 12 for Melbourne. In the past month we have received several new companies signing up. Perth is sold out and Melbourne has just a handful of stands remaining. Ed: What about visitor registrations. How are these tracking and do they meet your expectations? SC: When the shows were postponed more than 1300 people were registered to attend. We have been in communication with them all and most have reconfirmed they will be attending. Pre-registration numbers are tracking well, but we know from past experience, around 50 per cent of people who attend register on the day, so we need to keep the messages going strongly over the next few weeks. In terms of expectations, we are very bullish about Perth. The show is 30 per cent larger than the inaugural event held in 2019 and Western Australia has successfully managed the pandemic with life and business back to normal. We are expecting more than 1000 to attend. Melbourne has traditionally been the largest assistive technology show in recent years with attendance growing at each event. However, my expectation is that some people will be cautious, and attendance will, at best, be the same as 2018, around the 3000 mark. Ed: What plans are in place to ensure the expos are Covid-safe?
SC: Each state and venue have different health requirements which makes planning challenging and these can change at a moment’s notice. As a professional event organiser Interpoint is part of the Exhibition & Event Association of Australia who have developed nationally recognised strategies for holding large events. For each event we have submitted a Covid-safe plan to the venue to ensure it meets each state health department’s requirements. The expos will operate in a similar fashion to other large venues such as shopping centres. There will be hand sanitisers, social distancing and QR codes scanning people as they arrive. QR codes have been used for several years at the ATSA shows and provide a contactless registration system. The halls are large and within the indoor limit capacity. Ed: What can visitors expect to see that is new at the shows this year? SC: Firstly, let me start with what has not changed. The popular free coffee, free parking and free entry to the education seminars are all available. Visitors will see a new and revamped education program with some longer clinical sessions at the request of occupational therapists as well as a dedicated technology stream. We are still collating information from exhibitors as to what they are displaying, but as it is two years since the last Independent Living expos, we are expecting a lot of new products, technologies, resources and services to be on show for the first time. Ed: And a final question. What have you heard from the disability sector regarding the events? SC: Without doubt people are keen to engage in face-to-face conversations. The AT industry is very tactile and what we have heard is that visitors and therapists want to see, touch, feel and discuss patient requirements. There is pent-up excitement about the events; the vaccine rollout and border reopenings are giving everyone a sense of optimism. The events, though different, will be of huge benefit to allied health professionals, visitors, carers and suppliers.
Disability Gateway resource for Covid-19 information
eople with disability who are worried or concerned about Covid-19 can now contact the Disability Gateway for information and referrals for their individual situation. It is also available to families, carers and support workers. The Disability Gateway is a 2019 election commitment to develop a national website and phone line to assist people with disability and their families to locate and access information and services in their communities. When you call the Disability Gateway, you will speak to a trained staff member who will: • Listen carefully to you. • Use their connections to find things out, check the facts, and get information for you. • Transfer you to services that can help you, such as advocacy or counselling services. • Give you clear and accessible information. Last year, the Australian Government funded the Disability Information Helpline to provide people with disability with access to up-to-date Covid-19 information relevant to the disability community. The Disability Information Helpline has now transitioned to the Disability Gateway. The phone number and support has not changed.
How to contact the Disability Gateway
You can visit the Disability Gateway website anytime at disabilitygateway.gov.au. You also can contact the Disability Gateway phone line in the following ways: • Phone (free call): 1800 643 787 • If you are deaf, or have a hearing or speech impairment, you can also call the National Relay Service on 133 677 • If you require support in another language, you can use the Translating and Interpreting Service (TIS National) free of charge by: - calling the Disability Gateway on 1800 643 787 and asking for an interpreter, or - calling TIS on 131 450 and ask to be connected to the Disability Gateway on 1800 643 787. • A live chat service will also be available in the near future. The Disability Gateway phone line is available Monday to Friday 8am to 8pm. It is not available on weekends or national public holidays.
Do you have disability? Has someone hurt you, treated you badly or taken advantage of you?
Free, independent, confidential counselling and advocacy support is available. Call the National Counselling and Referral Service on
1800 421 468
For more information visit dss.gov.au/disability-royalcommission-support Support is here for you. NDAP
National Disability Advocacy Program
Augmentative communication helped improve William’s speech
ight-year-old, William Tagg is using augmentative and alternative communication (AAC) to enhance his speech. William, who has Down syndrome, had experienced delayed speech, which made it hard for him to communicate so AAC is helping him to communicate more effectively and participate in daily activities. His mother, Sharon said through William’s NDIS plan she was able to allocate some funding to a communications tablet. “It’s purely a speech device, and it goes with him to school every day. William uses it on words he can’t say clearly so people can understand him,” she said. “It has pictures with words underneath and we can upload photos of people and activities he likes.” Sharon credits William’s improvements to Gateways Support
Services speech therapist, Jenna, and William’s school, Spotswood Primary. “The school has been so inclusive of William, allowing Jenna to come into the school, work with William and see him working with teachers, an approach that has improved his focus,” she said. “Now William is counting to 10, his writing has progressed, his pronunciation is much clearer and he is using lots of new words.” Sharon said while William did say some clear words initially she wanted to encourage him verbally and was not opposed to him signing or using a tablet to help further develop his communication skills. “We’ve found AAC really helpful,” she said. “Although William has learnt words we never taught him, like sad and sick, so when he does not want to do something he will say ‘sick’ and it’s come from the tablet!
“He pulled the same stunt at home the other day on his father when he was asked to do something. Rob just said to him ‘You’re not sick and there is nothing wrong with you so come on let’s do something’ and off they went.” Sharon said since William has enrolled at the Melbourne school there are now three children with Down syndrome in Prep. “It’s a credit to staff, the principal, and the greater school community, who have all collaborated to make it such a wonderfully inclusive learning environment,” she said. “We couldn’t be happier William is in a mainstream school, and now he is equipped with all the right supports we can see he’s really beginning to blossom,” she said. For more information visit www. ndis.gov.au or www.gateways.com.au.
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Accommodation where it may be needed most
t 29 years old, Luke didn’t know his life was about to change dramatically. He started to become unsteady on his feet, he was blinking abnormally and developed erratic hand movements. His Aunty Kaye and the rest of the family were concerned for his health, and after much discussion, Luke agreed to see his doctor. “It was around 2010 and we all knew there was something wrong,” his aunt said. After eight weeks, and just before his 30th birthday, Luke received the life-altering diagnosis; Huntington’s Disease. “Luke was terrified and just grasping for information.” Kaye said. Luke’s diagnosis came in 2011, and after that his condition declined rapidly. He was admitted to hospital but was only allowed to stay for a month. That’s when Luke was sent to a home about three hours away from his family and friends. According to Kaye there was nowhere else for him to go, and it was awful for Luke as he was totally isolated
from his friends. She started searching for accommodation close to home, but like many young people with disabilities, his only option was aged care. “It was November 2014, when he moved into an aged care facility. That was seven years ago and he has been there ever since,” she said. “They have done the best they can for Luke but being a young person, he won’t engage in any of the activities whatsoever, he won’t go out into the dining room, he lives in his room and that’s it.” Like the other 4,800 young people with disabilities living in aged care, Luke is not living the young life he deserves, he is not living with any sort of independence or choice over his daily activities. But things are about to change for Luke, and hundreds more, thanks to Youngcare’s Specialist Disability Accommodation, purpose built for people with high care needs. Luke will soon call Youngcare’s North Lakes apartments ‘home’. A bustling hub of activity, North Lakes is close to
his family and friends and all of the activities he loves. With 24-hour, on-site support, Luke will also have options. Rather than sitting in bed with the television on all day, Luke can choose how he wants to spend his days, whether that’s going to art therapy, wheeling along the waterfront at Sandgate or seeing a movie. Kaye hopes that this new way of living will inspire Luke and help to keep his condition stable for years to come. “I really think he knows that’s he’s going to his new place because the first time he came to visit his apartment I saw him on the balcony with his hands in the air, expressing amazement.” Youngcare has vacancies in Brisbane (North Lakes, Rothwell, Chermside), the Sunshine Coast (Pelican Waters, Noosa Heads) and the Gold Coast (Helensvale). If you, or someone you know is looking for a place to call home, like the North Lakes apartments, call Youngcare on: 1800 844 727 or visit www.youngcare.com.au/sda
Link to...Accommodation & Home Support
Link to...Accommodation & Home Support
Neuro robotic device claims to
rehabilitation by Caitlin Maynard
oyal Rehab in Sydney has become the first rehabilitation centre in Australia to have EksoNR, an advanced robotic exoskeleton from the US. The device could be a gamechanger for people following incomplete spinal cord injury, acquired brain injury and stroke or neurological conditions including Parkinson’s disease and multiple sclerosis. The exoskeleton not only gives assistance with walking and standing but is specifically designed for rehabilitation. Patients using the EksoNR need to be actively participating for the technology to function. Physical therapists can customise the amount of support that the machine provides to each leg. Walking with the device gets the muscles moving in the correct way, which is important because it helps to stay on the right track. It also drives the brain’s ability to adapt and change as a result of
experience, also known as brain plasticity. After use with the EksoNR, the brain retrains the muscles on how to correctly move when walking. Royal Rehab CEO, Matt Mackay said breakthroughs in technology that are driving better and faster for people living with life-changing conditions and injury, have until now been unavailable in Australia. “Robotics, virtual reality and exoskeletons are an integral part of programs in other countries because they can accelerate recovery and mobility to a whole new level. Australian patients now have access to this potentially life-changing technology,” he said. The EksoNR has unique data and measurement capabilities, capturing walking time, distance and speed from each patient’s session and saves it onto a dashboard. This allows the therapist and patient to accurately measure progress throughout the rehabilitation journey.
It features smart assist software for physiotherapists to vary the support of the device for each leg independently, from full support to free walking, enabling rehabilitation to a large range of patients, from those who have less strength to those who are nearly independent. The EksoNR has programs to help patients balance, weight shift, squat and step in place to familiarise themselves with the technology and how it works before they start walking. Without assistance from the EksoNR, many patients walk in a way that attempts to compensate for weaker muscle function. Sensors and software continuously monitor and regulates leg movement to minimise incorrect patterns, improving the ability to move more effectively. The equipment takes users back to the very beginning and lets them feel how their muscles should be moving without risk of falling or relying on their own coping mechanisms for moving.
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Passion & Purpose for this wheelchair rugby player
heelchair Rugby League is not for the faint hearted. It’s a game of strategy, contact and clashes louder than you will hear inside any sporting arena. Wheelchair Rugby League is also the passion and purpose of Living My Way Member, Joseph. But while Joseph no longer plays the powerchair version of the sport, his goal is to develop the manual
chair version into one of the leading disability sports in the country. A two-time Australian Powerchair Hockey representative, in 2004 and 2010, his motivation for putting all his energy into the sport is the potential impact it could have in the diversity and inclusion space. Different to other Para-sports, Wheelchair Rugby League is said to be the most inclusive sport of all. Not solely a disability sport, everyone is welcome to compete and women and men can play in the same team. According to Joseph, it has a very large following, especially on the East Coast. “To all these people with disabilities that thought they would never have the opportunity to play sport, or play rugby league, we’re giving them the opportunity. “There has been some massive progress both here and internationally. Next year’s Rugby League World Cup in London is three events in one - men, women and wheelchair.” Joseph’s efforts in developing the sport have been fueled by the work
Are you looking for a NDIS registered Occupational Therapist? Living My Way take an individualised approach and specialise in Physical and Neurological disabilities.
of Living My Way, which he said is instrumental in him staying involved in the sport he loves. “I’ve been with them for two years now and all the support I get is aimed at keeping me involved in Wheelchair Rugby League because that is where I need to be at the moment.” Born with spinal muscular atrophy, Joseph works with both the Support Coordination and Occupational Therapy teams at Living My Way. “Everyone there has the knowledge and understanding of what each of us is going through, and that we’re all here just trying to achieve something that can be a little difficult, whether it’s getting a new wheelchair or a modification,” he said. “To find someone with a great attitude and willing to help isn’t easy but luckily Living My Way has got those people, which makes it easier. It is like having someone willing to run the extra mile just to get the right answer. The human side of it is special and that’s what makes Living My Way better than most.”
Contact the experienced Living My Way today www.livingmyway.org.au (02) 8525 4000 firstname.lastname@example.org NDIS Registered | Not-for-profit
MORE PEOPLE GETTING ON WITH LIFE Plus other services available | Support Worker services | Plan Management
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apphire Support, located on the stunning Sunshine Coast of Queensland, has been assisting people with disabilities reach their potential for the past three years. Since inception in 2018 Sapphire Support has been delivering SIL (Supported Independent Living), CP (Community Participation) and STA (Short Term Accommodation - respite care) services. With the Sunshine Coast as their backyard, there is a plethora of activities for participants to experience. Exploring the stunning beaches and national parks, visit the many markets, wildlife attractions, cafes and restaurants, to name a few. There is something for everyone. Sapphire’s Short Term Accommodation options include a stunning 8-bedroom homestead on a quiet acreage block in the Noosa hinterland. The home is within easy reach of Noosa’s famous Hastings Street with diverse shopping and a vibrant café scene, the stunning surf beach and the Noosa National Park which offers wheelchair-friendly access. The single level accommodation with wheelchair access suits a range of needs. Guests can enjoy cooling off in the resort style pool, relax in the gardens, or extend their cooking skills in the large entertainer’s kitchen equipped with all the latest appliances. A covered terrace offers perfect indoor/ outdoor living with casual seating and alfresco dining. Three living areas ensure guests have lots of space to relax and unwind, have quiet time, enjoy each other’s company over coffee or watch a movie in the theatre room. Three of the bedrooms feature en-suite bathrooms so guests choosing these rooms can enjoy complete privacy during their stay. It can be a daunting to consider even a short stay away from home when living with a disability. With comfortable, luxury accommodation and around the clock support from Sapphire’s team of highly experienced support workers, guests are ensured of an enriching and rewarding experience away from their usual living environment. Everyone needs a change of scenery from time to time; a time to disconnect from the mundane day-today, a time to experience new places or activities and a time to meet new people. This is why participants need STA in their NDIS Plan. STA may also be used when a regular carer needs a holiday, or it could be if the participant feels unwell and needs 24/7 support for a few days. Each person has different needs for STA so it is important to remember to ask for it in your plan. To find out more about Sapphire’s tailored Short Term Accommodation, visit www.sapphiresupport. com.au/short-term-accommodation-sunshine-coast/
Link to...Accommodation & Home Support
This is my picture of my happy place and I call it the circus.
Community Support Inc helping clients achieve their interests
ommunity Support Inc has been providing in-home and community supports for people living with a disability, mental health, or aged care related need for 30 years. It offers a range of professional, flexible services for children, young people and adults requiring home or community support across all metropolitan and regional areas of South Australia. With qualified staff supporting clients across the state, the organisation provides individuals with everything they need to help them live their life, their way. “At Community Support we focus on putting the client’s goals and
aspirations at the centre of everything we do – we are constantly looking for ways to improve our service delivery and supports and ensuring we attract the best staff to deliver services”, chief executive officer, Dr Angela Littleford said. “A great example is our client, Julie who has an intellectual disability and vision impairment. During the Covid-19 lockdown last year, she had been self-isolating and as a result was experiencing an increase in suicidal ideation and self-harm. To help her regulate her emotions our support coordination team began exploring ‘Mindfulness’ with her,” Littleford said.
Julie explored her feelings in represented shapes on a page and then began colouring them in. Due to her mental health and vision impairment this task was quite challenging, however with ongoing support and skill development she began producing a series of pictures and drawings. The client sent some of these directly to staff to say thank you for their support during this difficult time. Community Support staff were able to improve communication with her and began sending back pictures and letters in the hope her story would inspire others. Julie’s interpretation of the image shown is: “Sometimes my disability makes me feel sad. But I am learning to draw. It reminds me of a happy time and helps me. I went to the circus once and I liked all the colours and clowns and it made me happy. I forget when I am sad when I think of the circus. This is my picture of my happy place and I call it the circus.” Community Support worked with the client to put in place strategies to help her achieve a healthier state of mind. “It is rewarding to see the support we provide have a wonderful outcome for clients like Julie so they can be as independent as possible,” Littleford said. To find out more contact Community Support on: 08 8429 1200, email: email@example.com or visit our website: www.csisa.org.au
Providing you with personalised and professional services to help you live Your Life, Your Way. Community Support Inc are the South Australian experts in delivering one‑to‑one in‑home and community‑based support. Every day, we provide personalised, tailored support services to almost 1,000 people living with a disability. We have been delivering services to people of all ages since 1991. Our team are experts at making sure that you receive the support you want, at the place and time that suits you.
To find out more contact us today! Telephone 08 8429 1200 Email firstname.lastname@example.org Or via our website csisa.org.au
and making a difference
ome of you may have heard about the Disability Royal Commission (officially known as the “Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability) which started in 2019. The Disability Royal Commission is a national inquiry into the experiences of violence, abuse, neglect and exploitation of people with disabilities in all settings. At the end of the Royal Commission, recommendations will be made on how people with disabilities can be kept safe and better included in our community. The Chair of the Royal Commission has said: “the Royal Commission provides a genuine opportunity to bring about the transformational changes necessary to achieve a more inclusive society.” It would be fair to say that the Disability Royal Commission offers a once-in-a-generation opportunity to expose the treatment of people with disabilities throughout history to now but also to create significant change for current and future people with disability. So, you might wonder, what does this have to do with me? The Disability Royal Commission is built on the stories of people
It can be difficult to tell your story due to the content involved or because it is hard to get it all down on paper!
with disabilities, their families and supporters. While the Royal Commission is happening, anyone can make a “submission” that relates to the experience of violence, abuse, neglect or exploitation of people with disabilities. A submission is simply your story and your story can be about a specific incident or maybe about a solution you have thought of to the issues of inequality faced by people with disabilities who are exposed to violence, abuse, neglect or exploitation. Your story can be long or short, and it can be submitted in different formats such as writing or illustrations. The essential part of telling your story is to communicate whatever experience or message you think the Royal Commission needs to hear. It can be very difficult to tell your story due to the content involved or because it is hard to get it all down on paper. There are free, independent advocacy services that are available to assist you. To find your local advocacy service online visit www. disabilityadvocacyfinder.dss.gov.au/ disability/ndap/. Some people may also need emotional and wellbeing support to make sure they can tell their story in
a safe way. The Blue Knot Foundation offers free, specialist counselling support for people telling their story to the Disability Royal Commission. You can call the Blue Knot Foundation on: 1800 421 468, 7 days a week. Importantly, when telling your story, you may have legal concerns and need legal advice to ensure that your legal rights are protected. For example, if you want to name an organisation or person in your story or are worried that you will be unsafe or lose access to services. The Your Story Disability Legal Support service provides free, confidential and independent legal services to anyone telling their story. You can call them on: 1800 77 1800 or visit: www.yourstorydisabilitylegal.org. au/. Make sure your voice is heard and share your story with the Disability Royal Commission. For more information on the Disability Royal Commission, visit: www. disability.royalcommission.gov.au/
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Giving clients access to drying clothes increases independence
re your clients unable to dry their washing because they cannot reach their clothesline or access their garden? With winter approaching comes the question of how to get the laundry dry? For your clients it may be a year-round issue. How can clients with mobility issues get their laundry dry by themselves? Mrs Pegg’s Handy Lines are the answer to your client’s needs, with a range of models to suit those with mobility issues. One of the models NDIS managers and occupational therapists choose is the Easy 8 Line, which has the advantage of having a lower line level than a conventional clothesline, ideal for anyone with mobility problems and prevents falls by ensuring users don’t have to reach up high to dry their clothes. A Mrs Pegg’s Classic Easy 8 will help clients dry their clothes and gain valuable independence. At 110cm off the ground this portable clothesline allows for easy reach even from a
wheelchair. The Handy Line comes in three sizes and is fully assembled. The range of portable lightweight clotheslines deliver great value and provide people with different drying options to suit their lifestyle and living space. The large Classic 10 line holds four king sheets and the Classic 8 four queen sheets with two lines spare. The Handy Lines are ideal for anyone who has the chore of doing washing but are especially ideal for those with mobility problems, arthritis, workplace injuries, etc. They have the capacity to dry more than a full wash load without having to use an electric dryer which is a huge saving on power bills. Mrs Pegg’s are approved and registered for NDIS with an easy ordering process as well as being a provider for the Department of Veteran Affairs and Aged Care. For further information about Mrs Pegg’s Handy Lines visit: www. mrspeggs.com.au or to order Free Call: 1800 111 811.
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A home away from home
outh Australia organisation Barkuma has a place to stay for a short time, away from your usual home. This is offered when usual carers are not available, or for trying new things. A stay at the home is an opportunity to make new friends, develop new skills and take part in the community. Barkuma knows respite care is not just about the accommodation. Their staff will tailor the visit around your support needs, interests and goals, and work with you to try new activities.
Who is short term accommodation for?
• Paul is wanting to build his independence and eventually move out of his family home. Barkuma’s short term accommodation allows him to build the skills and confidence needed to make the transition to independent living. • Jennifer’s parents are her full-time carers and have a weekend away booked for their anniversary. Barkuma’s short term accommodation provides a safe and fun place for Jennifer to stay while they enjoy their anniversary weekend. The NDIS provides funding based on specific support needs and a carer and/or informal support network. Barkuma’s intake team can help navigate this to find the best options for you and your family. A short stay with Barkuma allows for your support network respite while giving you a change of an exciting getaway. Book your stay now PH: 08 8414 7100 or email: email@example.com
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or most of his life Colin, who has Cerebral palsy, lived independently. He loved his life watching his beloved Collingwood at footy games across Melbourne, enjoying pub meals and taking holidays at the beach. No doubts that exercising his independence was part of his identity. However, after spending three years receiving treatment for throat cancer in his sixties, it became apparent that living in independent accommodation was no longer an option. Colin required specialised support to enable him to have a good quality of life. His needs had changed and after assessing the options available, an aged care facility was chosen for him to move into. Once at the aged care facility, Colin did not receive the level of support that allowed him to live the life that had previously brought him so much joy. His Independence Australia support worker Joyce was able to recognise that the support provided was far from adequate and his quality of life was rapidly declining.
After meeting with Independence Australia team member Carl, they began working on an exit strategy to find new accommodation options. In December 2020, Colin moved into a new home at one of Independence Australia’s specialised
Buy Consumables Use your NDIS consumables budget to buy continence, wound care, home enteral nutrition (HEN) and disability-related health products. No matter how your NDIS plan is managed, you can shop online for the everyday items you need, from all the major healthcare brands. With warehouses in every state, your order can be delivered quickly to your doorstep. Visit store.independenceaustralia.com or call 1300 788 855
disability accommodation houses in Melbourne. After a couple of months in his new home, his quality of life has improved dramatically, he has autonomy over his choices and is living within a supportive community with his favourite support workers by his side. Independence Australia works tirelessly to provide the right support for its customers to enable them to live their life to the fullest. It delivers support in a way that exceeds expectations due to its social enterprise business model. When people shop with Independence Australia with its range of over 13,000 healthcare products, the funds are generated to support people like Colin when they need it. Online sales also help fund delivery of its free psychology and counselling programs for people with disability. Independence Australia is a leading supplier of products including continence aids, wound care, mobility and daily living aids. Ordering NDIS online is easy with a fast and reliable delivery service. Go to: www.store. independenceaustralia.com/
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rowing up and moving in with your mates is a rite of passage. But for some young people with disability, it is not so simple. Lara, Matthew, Andy and Wayne moved into their own Specialist Disability Accommodation (SDA) in Glen Waverley, Melbourne, run by non-profit aged and disability services organisation VMCH, just over 12 months ago. The story behind how the four came to live together is a testament to the love and tenacity of their parents, who advocated for more than 15 years to ensure their children were able to live together in a home that fostered friendship, fun and family. The families – Sue and Colin Chinner, Jill and John Cole, Kitty David and Karen Everett – met at Glenallen specialist school when their children were aged six. Over the years they became friends and discovered they shared a dream of seeing their children live in a place that was more than supported accommodation, but rather a home surrounded by people with similar values.
The Fab 4 Living the SDA dream
Matthew, Wayne, Lara, VMCH staff member Justin and Andy
Wayne and his pet bird, Ronnie
However, the process was not simple. Ordinarily, people with disability need to apply for accommodation that, while practical, does not necessarily provide for their social and personal preferences. The four, now aged in their thirties, had been attending VMCH’s day program and staff knew of their dream. With support from VMCH and the introduction of the NDIS that made the process for finding appropriate accommodation easier, the dream became a reality in December 2019. “Andy, Matthew and Lara were like the rat pack at school, they were thick as thieves. I’m really happy because I never thought it was going to happen,” Sue Chinner, Matthew’s mother said. “The move has been incredibly positive, and I would love to see this for the future, for friends to be placed together.” VMCH plans to add three more SDAs to its current 14 homes which are home to around 74 residents, in 2021. To find out more call: 1300 698 624.
Getting the support you need
inding genuine, reliable support coordination for her teenage son, Duke, felt like an endless battle for Williamstown mother, Maraid. As she sought to make the most of her son’s NDIS plan, Maraid tried several support providers unsuccessfully and was left feeling overwhelmed. She said it wasn’t until she met Gateways Support Services support coordinator, Ashesh that she finally felt supported. According to Maraid, reliable support coordination has been vital to ensuring Duke can fully participate in daily living and activities with his family in a meaningful and enjoyable way. “Having Ashesh means that I'm not constantly Google searching for activities or carers. When I’m at home I can focus on Duke and my two other kids,” she told Link.
Link to...Accommodation & Home Support Outside school, which is his favourite thing, Duke, who has Angelman syndrome, enjoys dancing around the house to blaring music, motorsport races and loud engine noises, or swimming with his father. With Ashesh’s support, Maraid was able to double Duke’s funding, enabling the family to modify their home and purchase specialised equipment. As for what makes a good support coordinator, creativity, trust and a good relationship are key. “You need to care about the kids and take time to get to know families, you can’t just know them by looking at a computer screen.”. For Ashesh, no matter which family, it comes down to caring deeply about helping them to get the best possible support. And the positive experience of Duke and his family is testament to that focus. “NDIS plans are intimidating for a lot of families, and language barriers make it even harder for them to understand,” he said. “If we’re working with a Vietnamese family, for example, we
have a Vietnamese support coordinator here at Gateways who can interpret the plan with the family. We also have three support coordinators from Indian backgrounds, including myself.” Gateways Support Services is an NDIS registered and quality accredited not-for-profit organisation supporting children, teenagers and adults with autism, intellectual disabilities and complex behaviours and their families across Geelong, south west Victoria and western Melbourne. For information visit: www.gateways.com.au
Link to...Accommodation & Home Support
Villas - at the forefront of SDA Interior – the living space
wo new Seton Villa purposebuilt homes for women with intellectual disabilities have opened in Sydney. The Specialist Disability Accommodation homes located in Ryde and Marsfield are designed with modern and wellappointed interiors to give residents a greater sense of home and community, as well as independence and self-esteem. Residents were able to choose their bedroom colours and furniture, with two sisters Melissa and Carmel Robinson now living together for the first time in 18 years. Speaking at the event, NSW Disabilities Minister Gareth Ward said the pathway to building has taken some time, however housing for people with disability has undergone significant change. “As a country we can be very proud of the way we treat people with disability today. The litmus test for any country or culture is how it cares for its most vulnerable. And between 1966 and today people with disability now have greater choice and control over their lives. It is not about dictating to people about what they need but asking them what they want,” the minister said. Seton Villa this year celebrated 55 years since it opened its first residence. The charity organisation operates seven supported independent living houses with another five SDA-approved homes in the pipeline. Collectively these are part of an $11 million investment in Seton Villa’s asset redevelopment to ensure the homes build capacity and maximise independence and skills for the residents.
Victor Dominello, MP for Ryde and NSW Disabilities Minister Gareth Ward with resident Susie Fraser
Residents Melissa and Carmel Robinson
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Disability Advocacy Service
- championing NDIS rights
outh Australians now have a dedicated avenue of support for dealing with NDIS challenges, the Disability Advocacy Service (DAS), run by the Uniting Communities Law Centre. Uniting Communities senior manager, Sarah Watson, said DAS is filling an important service gap for those who are eligible for the NDIS or receiving NDIS-funded services. “While there are existing general advocacy and legal services for people with disability, this is the first with a specific focus on the NDIS,” she told Link. “The NDIS can be confusing to
navigate, so it’s important that people know how to apply and find the right support, but also the options they have to dispute an NDIS decision.” South Australians who are eligible for the NDIS, or already receiving support, can access DAS. The team works with people having trouble accessing support or experiencing discrimination or unfair treatment. DAS can advocate on their behalf, as well as provide people with the knowledge and skills to advocate for themselves. Where matters cannot be resolved directly with the NDIS, DAS helps people to work through the appeals
process with the relevant tribunal. “Every person’s situation is different,” service manager and lawyer, David Ferraro said. “We are working with people with a range of needs – physical, intellectual or psychosocial – to provide legal representation, help plan support, assist with disputing decisions, or connect with other useful services.” As well as solicitors, the team includes disability advocates, social workers, developmental educators and speech and language pathologists. Enquiries to date have been about matters such as requests to help with the next steps once an NDIS request is denied, with tribunal appeals or with Guardianship applications. DAS also supports people whose circumstances have changed or whose situation is complex. The service is working with people across the state, in metropolitan, rural and remote locations. Find out more at: www. unitingcommunities.org/DAS or call: (08) 8202 5960
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What will they ask us next?
Amy Claire Mills with her vibrant and tactile quilts
tudio A, part of a major exhibition at Carriageworks, tackled the barriers faced by artists living with intellectual disability in accessing conventional educational and professional opportunities needed to become a successful artist. Presenting a new commission was Amy Claire Mills who spoke to Kymberly Martin at the opening. Her work Burden of Proof is about ableism, the discrimination or prejudice against people who have disability, especially those with invisible disabilities. She described her tactile and vibrant quilt display, that was shown in two parts, as a “conversation piece” which is why the quilts are facing each other. One reads: What’s wrong with you? and the other: Are you sure it’s not in your head? These frequently asked questions, that come from her various encounters, are sewn into the quilts. (See image). Mills, who has invisible disabilities including Cystic fibrosis, diabetes and has had a liver transplant, said when she chooses to disclose her disability the response from people often is it all in your head? “Invasive questions that really question my disability.” In addition to her textile work Mills also works in retail because “nearly every artist needs a back-up.” Her job is at Reverse Garbage, in Marrickville,
Sydney that takes in industrial waste. “Some of my textile pieces come from here with recycled materials as artists do think about the impact their work has on the environment.” This was her first showing at Carriageworks and another aspect of her ableist narrative was also on display at Firstdraft, an exhibition offering so-called ‘cures’ for people with disability, that also posed another question: Have you Tried?’ Sewn onto 45 cushions carrying different cure suggestions from yoga and positive affirmation to bone grafts – “Just some of the bizarre things people say to those with disability that they think will fix them,” Mills said. “It is not a conversation for people with disability it is really opening up as to how we communicate. I sell my ‘cure’ cushions in the hope it will encourage people to think about ableism that will in turn dictate our interactions with people with disability, hopefully into a new vocabulary of softness, empathy and care.” Mills studied Performance Arts at university that encouraged her to take the path into textiles. “Performance Arts is very high energy, but I reached a point where I wanted to do something I could practice at home which is why I moved into textiles,” she said. For more details visit: www.amyclairemills.com Artists Jaycee Kim and Mathew Calandra at the Rainbow Plait installation
lso on display at Studio A was the gigantic Rainbow Plait with pool noodles covered in white fabric, sewn to a particular length, then coloured with acrylic paint. “The rainbow colours allow me to change moods and genders. It is about the power of transformation,” creator of the piece, Jaycee Kim said.
nother exhibit was from tarot reader Skye Saxon who conducted tarot readings in her self-styled tarot tent. She will continue to read tarot cards beyond the exhibition with her cards are available at Carriageworks online store and her digital tarot reading will be ongoing as well. Studio A was part of a major presentation of projects including large-scale art installations, performances and screenings from more than 50 Australian artists, held at this multi-art precinct in Sydney recently.
Skye Saxon with her collection of ink-on-pencil tarot cards
“We seriously love the Dawn Clock. It’s quite amazing that a clock has completely changed her level of independence!” ~ Jen, Mother of Emily J Prior - ABC Me Star & Neurodiversity Advocate
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eisure Options offers exciting holidays, relaxing respite and memorable travel experiences for those who require assistance and support in achieving their travel dreams. Travel can sometimes seem like a daunting undertaking, even to a seasoned holiday maker and in the current climate, with the fluctuating travel restrictions, this is even more so. At Leisure Options, the team take great pride in offering a seamless, stressfree holiday experience from the initial travel application right through to your return home from your journey. As a boutique operator specialising in small groups touring Leisure Option’s focus is on creating personalised travel experiences that factor in the specific needs and desires of each traveller. With the understanding that changes in daily routines can sometimes be challenging, Leisure Option’s travellers benefit from this individualised approach. The reservations team take in to account each traveller’s personal
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considerations when suggesting suitable holiday destinations and travel options. Once on tour travellers can enjoy the experiences best suited to their interests in calming and comfortable environments. At the heart of each holiday and respite experience are the dedicated Leisure Options holiday team. Part tour guide, part personal support, the holiday team come from multiple backgrounds within the disability sector. All team members have an extensive love for travel that enables them to provide an experience that will engage, educate and rejuvenate whilst creating cherished memories for all that travel.
The 2021 – 2022 Leisure Options holiday brochure has just been released with travel opportunities available through to August 2022. This coming year sees a strong focus on exploring many of Australia’s amazing and unique destinations. Moving ahead, international and cruising holidays will also return as circumstances permit. If you happen to have a specific holiday in mind feel free to contact the team to discuss a personalised holiday option. Leisure Options can be reached on: 03 9646 066 or 1300 363 713. Email enquiries can be addressed to: email@example.com
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The power of sport breaking down the barriers
orld champion boccia player, Jason Mayweather has joined forces with Queensland based not-for-profit, Sporting Wheelies to change the game, breaking down the barriers for people with disability through the power of sport. Sporting Wheelies takes an all-inclusive approach to health and fitness, physical therapy, sport, active recreation, and now employment opportunities. The 37-year-old became a part of the Sporting Wheelies family many years ago. Born with cerebral palsy, doctors told his parents he would never walk or talk. Defying those odds, Jason talked at nine-years-old, and with the help of highly skilled physical therapists at Sporting Wheelies, defied them again in 2019 when he took his first steps.
Since joining the organisation, he has worked hard in achieving a litany of prestigious titles, from representing Australia at four World Championships for boccia, to being an incumbent captain of the Queensland boccia team and recently receiving a Queensland Lord Mayor Award for volunteering. Jason begun his volunteer work through the Sporting Wheelies’ Inclusive School Sports Program, designed to encourage children of all ability to partake in sports. “Setting achievable fitness goals and knowing resources are out there for every individual should be common knowledge but unfortunately it’s not, so I wanted to change that,” Mayweather said. “I’m so grateful to have had the opportunity to talk with kids and encourage them to get involved with Sporting Wheelies as soon as they can.”
After six years volunteering, Jason was recently appointed a ‘game changer’ through the Sporting Wheelies Raising the Bar Peer Support Leadership (PSL) Program, that employs at least 25 Queenslanders living with a disability to create awareness and empowerment amongst the community. “It’s a dream for me to be offered this role - and to know it comes from hard work and sharing my experiences, that means everything,” he said. Raising the Bar is a metro and rural program that will be funded by a recently awarded $1.1 million grant from the National Disability Insurance Agency (NDIA), to ensure successful employment stories of those living with a disability are brought to the fore. Sporting Wheelies CEO, Amanda Mather, said the program endeavours to educate children about disability, Para Sports and show students it is possible for everybody to set and achieve active goals. “Game changers like Jason can share their success stories with the younger generation to inspire all to reach their full potential no matter their limitations,” she said. As Jason gains employment, he becomes an outlier in a marginalised faction, another issue that Mather hopes Sporting Wheelies continues to break down. “The unemployment rate for people with any type of disability is twice the rate for those without and that’s unacceptable,” Mather said. Disability employment rates in Australia rank at 21 out of 29 OECD countries, with research indicating that there is a lack of meaningful jobs accessible for those living with disability. “We are hoping to positively influence the employment rate for those living with a disability through the Raising the Bar program, because as we see it, employment, like health and fitness, is an enormous part of any individual’s wellbeing, and it deserves to be inspiring.” To hear more about these gamechanging resources and services from Sporting Wheelies visit: www. sportingwheelies.org.au/ or email: RaisingTheBar@sportingwheelies.org.au
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nce the current Covid-19 travel restrictions ease Ability Adventures are looking forward to welcoming our neighbours back to New Zealand shores. When occupational therapist Marina Hanger found herself designing and leading wilderness and adventure programs for people with visual impairments, she had no idea it would result in her running her own business. Ability Adventures was founded in 2008 as a way to support people with disabilities and older people to enjoy the adventure of travel. As tour planner, Hanger now focuses on creating tailored accessible tours and disability travel services. “I love the fact that I get to break down the barriers that prevent people from experiencing all that New Zealand has to offer,” she said. “Working for over 30 years with people with a wide range of disabilities I prefer to find solutions to overcome obstacles, which is something I learnt in my time as an OT.“ Among her most memorable assignments is when she organised a tandem biking adventure for a group of three blind and vision impaired friends. The 5-day trip began near New Zealand’s highest mountain Aoraki/Mt Cook in the South Island’s Southern Alps and finished 300km away in the seaside town of Oamaru. The ride followed an epic mix of off-road tracks, purpose-built cycle trails,
New Zealand awaits you! On the (bicycle) road again! unsealed and sealed roads, past stunning glacial fed lakes and snowcapped peaks before following along the country’s main Hydro Electric System through to an incredible area of rock and fossil formations. The group were supported by three pilot riders and a support vehicle/driver. “The cycling was predominantly downhill, descending 780 meters over the course of the trail
before reaching the Pacific Ocean at the finish,” Marina said, who organised and led the journey. Although by the end everyone was grateful to be sitting on something other than a bike seat, all were buzzing from the challenge and excitement of the trip. “You should always be testing your limits, or you will never know what you are capable of,” she said.
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Accessible drone training program takes flight in Perth
n what is believed to be an Australian first, a new drone training program is making new technology more accessible to people with a disability, specifically for those with mobility or dexterity impairment. The aim of the course is to train attendees with the latest theortecial and practical aspects of drone piloting, upskilling them for employment opportunities. The inaugural class held in Perth included students with a range of disabilities including muscular dystrophy, spinal muscular atrophy, cerebral palsy and quadriplegia. The course was a collaboration between Western Electric Sporting Association (WESA) Techlearn and Illuminance Solutions. WESA president Jack O’Keeffe said the course would have a range of benefits for attendees as children with disabilities were at greater risk of dropping out of school early and not pursuing further study or training. “This course provides not only a social connection, but will open pathways to employment,” he said. Techlearn CEO Pulkit Soni said the course had attracted strong interest from the community with eight
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students aged 14-49, the maximum capacity, with more than 15 people wanting to participate. “While we have previously focussed on robotics, automation and drone training in the mining industry, this is the first time we will be training differently-abled people. Licenced drone pilots can work in a range of industries including video, photography, mining, surveying, farming, delivery and shipping, so this course will provide practical skills for future employment,” he said. Illuminance Solutions has a long history in providing free digital literacy programs to marginalised sections of
the community and hosted the event free of charge. According to CEO, Nilesh Makwana everyone should have access to the latest technology training and technology opportunities. “People with disability bring valuable skills, experience and insight and are an integral part of a diverse and inclusive workforce that businesses should be aiming for,” he said. There are five sessions planned for Perth and discussions for expanding to the Broome region. For information on the course visit: www.illuminancesolutions.com.au
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Luke serving up good service
A 19-year-old finds his in
hospit a lit y A fter attending NOVA Transition to learn all the skills to be job-ready, through NOVA Employment in Rouse Hill, Sydney, 19-year-old Luke landed a role as a waiter at Caffe Cherry Beans. Luke started at NOVA Transition in 2019 as NOVA Employment Rouse Hill manager, Wayne Vumbaca remembers: “Luke came into the Transition to Work program very keen and motivated but lacked a bit of confidence and needed to build up that confidence because he loves engaging with people.” Whilst in the Transition program Luke took on several work experience roles in different industries to see where his skill set best matched up. He spent time in retail, labouring, administration and hospitality, and it was hospitality where he found his niche.
“The work experience helped him build the communication skills he needed to deal with people and also the confidence in dealing with his work colleagues and customers,” Vumbaca said. According to Luke’s mother Carolyn, when Luke was growingup he wanted to be a drummer and a gamer. “In high school he was very active and friendly but one of my biggest fears was him being employed. Since coming to NOVA he has become more mature and when I look at Luke today I am grateful for his ability to adapt to a changing world.” After being employed for 12 months, Luke is keen for people to know his life has changed for the better and is happy that he has made his mother proud. “I like working. I work hard, I clean hard and I try hard.” His advice for others was: “be
organised, work hard and get your job done.” At Caffe Cherry Beans he has been well matched to an environment where he can utilise his talents and Vumbaca too is proud of the job match. “Luke has found an environment where he can use his strengths and abilities,” he said. Renee Choi, owner of Caffe Cherry Beans is also happy with Luke as an employee. “Luke is very smart, and we only had to train him once.” NOVA Transition supports young people with disability on their path to employment and independence by helping them become ready for work and able get a job that suits them. With locations across Sydney, NOVA has successfully placed hundreds of trainees into employment. For more information call: 1800 656 537
Carol Robinson with her cross-stitch work
NDIS funded employment initiative pays off for
t wasn’t an easy journey for Carol Robinson; to say she has patience is an understatement, having applied for more than 150 jobs in open employment she struggled before joining SA Group Employment Bedford. Carol has worked with Bedford for nearly a decade in a variety of roles, including reception, packaging and engineering. After visiting a craft fair and purchasing her first quilting kit, there was no stopping her and she has since added spinning, weaving, beading, knitting and crocheting to her repertoire. Carol has also joined a community quilting group who donate their works to the Lyell McEwin and Modbury Hospitals. Last year, that side hobby became a serious business thanks to a pilot partnership Bedford struck with Rapid Enterprise Development or the ‘RED’
program, an NDIS grant-funded initiative to empower people with disability to become self-employed. “It was great because for 20 years I always dreamed of owning my own business, Carol told Link. “To start with people came out and did a workshop to explain what it was all about. I wanted a shop and to name my business to incorporate all my craft.” Her mentor from the RED program Arthur Mitsioulis, helped Carol develop a business model. They researched the ideal target market, particularly as Carol was keen to engage with people in regional centres, and examined and compared her start-up to other embroidery and related businesses. A few months later, the hard work paid off and Carol became the proud owner of ‘House of Needleworks’ - her own website promoting a range of
hand-made products and craft supplies. Currently, sales of her range are mostly to friends, family and work colleagues, so learning more about marketing and expanding her audience is her next step. She also plans to add to her range to include framed cross-stitch work, tea towels and coaster sets decorated with digital prints of her work. As a RED Academy member, Carol also sells her products from an outlet stall at ‘Accessible’ the RED Academy members market held monthly to showcase products and services developed throughout the RED programs, as well as some other great products from the local community. Go to: www.stayhappening.com/e/ accessible-the-marketplace-foreveryone-E2ISTDFX127 Visit: www.houseofneedleworks. com.au/shop/
A Covid miracle – Yes for
hen Covid hit Tasmania it changed Ben Winwood’s direction in his life. The 35-year-old from Launceston was recovering from a spinal cord injury after a car accident when his love of drawing came to the fore, and he began selling his cartoon illustrations at local markets and festivals. To help local community groups and himself during lockdown Winwood started drawing a page a day posting them on his Facebook page. Then lady luck came his way. A woman who worked at the Waverley Community Skills Café, who had been following his work online, suggested turning his creative posts into a book. He described the eventual publication and
sale of Community Colours through a local bookstore as ‘A Covid miracle’. “I tend to find inspiration from a lot of different places. For the book, my friends and family on social media made requests each day and I just draw them.” His drawing skills include cartoons, faces and animals. “Bring me a photo of your pet dog and I will draw it!”. Post-Covid, Winwood has returned to his work as school chaplain, at Evandale Public School and Newstead Christian School two days a week. He told Link his role at the schools involves support work, mentoring and helping students develop social skills. Not surprisingly he has set up
art groups which are proving to be popular. Winwood also works one day a week as a support worker at Wise Employment. As for future plans: “To continue working in schools, supporting and encouraging young people in their own creative journey.” And his advice for finding work. “Just put yourself out there, engage with your community with your skills and strengths, be it volunteering, sport or actively involved in events etc. And don’t give up, it took me a while to find work again after my accident, but now I have three jobs!” To purchase Community Colours which costs $25, go to: artbyben@ outlook.com.au
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Serving up new skills S
taff at INC Café in Adelaide were recently given the opportunity to undertake a barista course through SA Group Enterprises and the Australian Coffee Academy, to enhance their coffee making and hospitality skills. The course enables participants to leave feeling confident to work in any establishment to produce quality coffee and understand general operations and protocols of a café. Support and training officer Kuldeep, and INC Café supported employees Shawule and Jack, participated in the class that was run by barista trainer Thanh Luu. The course incorporated both theory and hands-on learning and was undertaken in one day. It started with two hours of theory, a break to digest
information and then practical based for the remainder. Those taking part in the day also received a Certificate of Attendance for their participation. Thanh said the course aims to facilitate different learning abilities and styles and, as well as acquiring coffee and hospitality principles, encourages teamwork within the group. “If a participant makes a mistake, they don’t have to feel uncomfortable, they can learn with the support of their colleagues, which also assists in team bonding,” he said. Kuldeep, Shawule and Jack gained knowledge starting from a brief history of coffee, to steaming and texturing milk, combining, weighing and patting down coffee. They also learned about different types of coffee, fine and course, hygiene,
cleaning the machine and service and presentation etiquette. At the end of the training, participants were asked to produce a latte, which Thanh said: “Builds on their confidence and helps to create independence in directly applying information gained”. After completing the class Shawule said: “I liked the course, it was informative and I enjoyed learning how to correctly make a coffee, texturing milk and discovering all of the different types of coffee”. “I am extremely proud of our supported employees who undertook the course. I couldn’t be happier for them to gain further skills they can put to practice,” SA Group Enterprises Nils Wartemann said.
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Jodi McGuirk at her VA desk
Read on! W
hen Adelaide Vision Australia Radio volunteer Jodi McGuirk was approached to read Link Magazine on air, she knew she had found her true reason for volunteering at the station. Although she has been part of the disability community for over 20 years this was the first opportunity Jodi had to share more in-depth disability news and information. “My 24-year-old daughter Shannon has an intellectual disability and we’ve been doing a range of different workshops since she was an infant and in later years navigating the NDIS.
In all that time I didn’t read much material about disability, apart from my daughter’s.” Jodi has been reading Link, along with other disability news and information, each week for three years. She said her volunteering journey began when she accidently stumbled onto the specialised radio reading service while in her car one day and was immediately interested. “I love reading aloud and everyone has a right to know what’s happening around them. Vision Australia Radio is a vital tool in getting information,
whether it is news, current affairs or entertainment, out to a large audience that might otherwise not have access to it.” While Vision Australia is a leading national provider of blindness and low vision services in Australia, its radio services across Australia benefit the community far and wide. According to Jodi, a broad crosssection of society also benefits from her work at the radio station including people who work in the disability sector or in schools, people in the business sector and health care. “The content I read in Link is encouraging and informative and very insightful to changes happening in the disability community. I think Link shows how society has become more understanding toward disability and people’s needs and more attuned to inclusivity.” What’s News in Disability’ can be heard across the Vision Australia Radio network Thursdays at 9pm (Adelaide Fridays at 8:30pm). Learn more at varadio.org.
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