tag:theconversation.com,2011:/us/topics/communication-disabilities-58569/articlesCommunication disabilities – The Conversation2023-08-28T01:53:41Ztag:theconversation.com,2011:article/2120972023-08-28T01:53:41Z2023-08-28T01:53:41Z20% of children have developmental delay. What does this mean for them, their families and the NDIS?<p>Professor Bruce Bonyhady is often described as the architect of the National Disability Insurance Scheme (NDIS) and is co-chair of the panel reviewing it. He <a href="https://www.ndisreview.gov.au/sites/default/files/2023-08/a-question-of-balance-speech.pdf">spoke last week</a> about the sustainability challenges faced by the scheme. </p>
<p>Among the key issues identified was that <a href="https://www.abc.net.au/news/2023-08-22/concerns-about-ndis-raised-by-co-chair-of-review/102758296">20% of Australian children</a> experience learning difficulties, developmental concerns, developmental delay or are found to have disability. Bonyhady <a href="https://www.ndisreview.gov.au/news/future-ndis-and-where-we-are-heading">said</a> this made it a “mainstream issue”. He added the NDIS was never designed to be the main support system for the majority of these children. </p>
<p>With the <a href="https://www.ndisreview.gov.au/resources/reports/what-we-have-heard-report">NDIS review</a> due to report to state and federal ministers in October, the comments signal a re-calibration of the scheme. </p>
<p>This presents another challenge: which government systems outside the NDIS will embrace the large number of children who need developmental support?</p>
<h2>What is a developmental delay?</h2>
<p><a href="https://raisingchildren.net.au/guides/a-z-health-reference/developmental-delay#:%7E:text=Developmental%20delay%20can%20show%20up,short%20term%20or%20long%20term.">Developmental delay</a> is a general term that refers to young children who are slower to develop communication, physical, social, emotional and cognitive skills than typically expected. The pace of a child’s development can be measured in many ways, one of which is comparing their development to established <a href="https://www.healthdirect.gov.au/developmental-milestones">milestones</a>, such as when they learn their first word or when they learn to walk.</p>
<p>Many things can cause developmental delay. These include biological differences (such as genetic conditions), environmental challenges (including deprivation) or a combination of both. In many cases, the causes of a child’s developmental delay remain unknown.</p>
<p>Developmental delay is a term commonly used in clinical practice, but not included in official diagnostic manuals like the <a href="https://www.psychiatry.org/psychiatrists/practice/dsm">Diagnostic and Statistical Manual</a>. This is because developmental delay is viewed as a temporary state in child development. It is most often used for children under five. </p>
<p>As children grow older, some developmentally catch up with their peers. Others continue to lag behind. At a certain point in development – typically around five - children in the latter group will start to be referred to as having a developmental disability. </p>
<p>Developmental disabilities are included in official diagnostic manuals and include autism, attention deficit hyperactivity disorder (ADHD), intellectual disability, specific learning disorders, communication disorders and developmental coordination disorder.</p>
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<h2>Developmental delay and the NDIS</h2>
<p>The NDIS has a <a href="https://www.ndis.gov.au/understanding/families-and-carers/early-childhood-approach-children-younger-9/developmental-delay-and-early-childhood-approach#how-an-early-childhood-partner-will-evidence-developmental-delay-for-children-younger-than-6">specific definition of developmental delay</a> which encompasses three areas. Children are considered to have a developmental delay if their delay is: </p>
<ul>
<li>due to mental or physical impairments</li>
<li>substantially reduces functional capacity</li>
<li>requires specialist services. </li>
</ul>
<p>Around <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">11% of all NDIS participants</a> are classified as having a developmental delay. There are also a significant number of children with developmental delay who are not within the NDIS. Taken together, these groups make up about 20% of Australian children under five. </p>
<p>While there is a general community view that developmental delay is an increasing issue in Australia, there is a lack of data tracking over time to understand if this view is accurate.</p>
<p>Our clearest indication comes from <a href="https://www.aedc.gov.au/early-childhood/findings-from-the-aedc">Australian Early Development Census</a>, which surveys more than 300,0000 children entering primary school. </p>
<p>The latest available data indicate there are now slightly fewer children who are “developmentally on track” (down from 55.4% in 2018 to 54.8% in 2021) and an increase in the number of children who are “developmentally vulnerable” in any one area of development (up from 21.7% in 2018 to 22% in 2021). </p>
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<a href="https://theconversation.com/a-decade-on-the-ndis-has-had-triumphs-challenges-and-controversies-where-to-from-here-208463">A decade on, the NDIS has had triumphs, challenges and controversies. Where to from here?</a>
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<h2>Supporting children with developmental delay</h2>
<p>There has always been a large number of children experiencing developmental delay. But the fragmentation across state/territory and Commonwealth health and disability systems has meant the true scale of children struggling with development has not been clear. The unified system of the NDIS has made the percentage of children with delays clearer.</p>
<p>But, as Bonyhady notes, the NDIS was not designed to support all these children. The NDIS was meant to complement existing systems such as health and education, and to provide additional support to children with the most significant disability impacts. This figure is estimated to be a small proportion of the 20% of children who meet criteria for developmental delay.</p>
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<h2>Meeting children and families where they are</h2>
<p>The NDIS is rightly <a href="https://www.ndisreview.gov.au/news/future-ndis-and-where-we-are-heading">described</a> as a policy miracle, and has benefited hundreds of thousands of Australians – with millions more to come. Its future thriving is highly dependent on how our community supports children with developmental delay. </p>
<p>The NDIS has accelerated a trend for the <a href="https://www.afr.com/policy/economy/children-undermining-the-sustainability-of-the-ndis-20230630-p5dkp7">medicalisation</a> of development supports. Children with developmental delays receive supports within clinics, rather than in the natural settings in which they live and function every day. </p>
<p>This has <a href="https://theconversation.com/more-children-than-ever-are-struggling-with-developmental-concerns-we-need-to-help-families-connect-and-thrive-209866">weakened major protective factors</a> known to support child development, such as community connection and parental empowerment.</p>
<p>Building capacity to support children with developmental delay in their everyday contexts – at home, in childcare, kindergartens or preschools, in the local community – will be crucial to ensuring children with developmental delay and their families thrive into later childhood. </p>
<p>And it will help the NDIS remain the life-changing system it is.</p>
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<img src="https://counter.theconversation.com/content/212097/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Andrew Whitehouse is the Director of CliniKids, which is the community health arm of the Telethon Kids Institute. Children accessing CliniKids may be supported through the NDIS. Andrew receives research funding from NHMRC, ARC, the Autism CRC, and the Angela Wright Bennett Foundation</span></em></p>Developmental delay is viewed clinically as a temporary state where children are slower to develop than expected. It is most often used for children under five.Andrew Whitehouse, Bennett Chair of Autism, Telethon Kids Institute, The University of Western AustraliaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1964812023-01-19T00:09:52Z2023-01-19T00:09:52ZWill AI tech like ChatGPT improve inclusion for people with communication disability?<figure><img src="https://images.theconversation.com/files/504840/original/file-20230117-20-k3pdge.jpg?ixlib=rb-1.1.0&rect=9%2C6%2C2089%2C1390&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com.au/detail/photo/confident-young-man-in-wheelchair-at-home-royalty-free-image/1067614024?phrase=disability%20communication&adppopup=true">Getty/RyanJLane</a></span></figcaption></figure><p>If you’re one of the <a href="https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features872015?OpenDocument">1.2 million</a> Australians with communication disability or among the <a href="https://www.stylemanual.gov.au/accessible-and-inclusive-content/literacy-and-access">44% of Australian adults with low literacy</a>, you may soon find helpful, automated communication assistance online. </p>
<p>The chat bot <a href="https://chat.openai.com/chat">ChatGPT</a> – based on GTP3, a large language model – is a disruptive technology designed to “<a href="https://help.openai.com/en/collections/3742473-chatgpt">provide human-like responses</a>” to user input. It is a form of artificial intelligence (AI), boosted by machine learning, is used by <a href="https://www.fastcompany.com/90819887/how-to-trick-openai-chat-gpt">more than one million people</a> and is <a href="https://theconversation.com/the-chatgpt-chatbot-is-blowing-people-away-with-its-writing-skills-an-expert-explains-why-its-so-impressive-195908">impressing educators</a>.</p>
<p>It responds to the user’s questions and commands, and can draw upon its billions of words to process and generate text, appearing informative and knowledgeable. </p>
<p>Described somewhat poetically as producing “<a href="https://www.wired.co.uk/article/chatgpt-fluent-bs">fluent bullshit</a>”, its unchecked outputs may be plausible enough to score a pass mark on assignments and tests, while <a href="https://www.vox.com/recode/2022/12/7/23498694/ai-artificial-intelligence-chat-gpt-openai">bypassing plagiarism detection software</a>. </p>
<p>If it becomes accessible for everyone, AI of this type could do more than disrupt exams. It could help people with communication disability and others who struggle with text, and could also significantly enhance rate of communication. People using speech generating devices are often limited to laboriously entering a mere <a href="https://www.tandfonline.com/doi/full/10.1080/07434610701571058">10 words per minute</a> with word prediction only increasing that to <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/1460-6984.12449">12-18 words per minute</a>. </p>
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<h2>Communication disability can leave you lost for words – and excluded</h2>
<p>There are many types of communication disability impacting a person’s ability to speak, understand, or write. </p>
<p>Impairments of speech, language and social communication are associated with <a href="https://www.cdacanada.com/wp-content/uploads/2018/11/Disabilities-That-May-Affect-Communication.pdf">a wide range of conditions</a> including cerebral palsy, stroke, traumatic brain injury, and motor neurone disease. Communication disabilities can impact the clarity of your speech and what you can say, your ability to understand others or express yourself, and your skills in <a href="https://journals.sagepub.com/doi/10.1177/2396941520979857">reading and writing</a>. </p>
<p>A communication disability can mean you need to economise on what you say, as each word takes more effort and time to produce or write. If you have limited literacy, you’ll need <a href="https://www.cdc.gov/ncbddd/disabilityandhealth/disability-barriers.html#:%7E:text=Communication%20Barriers&text=The%20use%20of%20technical%20language,for%20people%20with%20cognitive%20impairments">text simplified</a> to make sense of it. You’re also more likely to encounter more barriers to completing training, <a href="https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/employment/underemployment#underemployment%20rate">getting a job</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8215755/">forming relationships</a>, managing your own health and life decisions, and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4968942/">participating in social networks</a>. </p>
<h2>How technology like ChatGPT could help</h2>
<p>AI like ChatGPT can help pull information together in a neat text, and it can turn written text <a href="https://www.sigmoid.com/blogs/gpt-3-all-you-need-to-know-about-the-ai-language-model/">into a summary for readers with low literacy</a>. </p>
<p>We already know that AI assistants like “Alexa” and “Siri” can help <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/1460-6984.12615">people with intellectual disability</a> and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7547392/">speech impairments</a> to communicate and speech-recognition software is improving. </p>
<p>But ChatGPT looks like it will be more inclusive of diversity by being able to understand poorly written commands, or sentences with several grammar or spelling errors. It can reportedly “read” poorly structured input, re-write and improve imperfect writing, and simplify complex texts <a href="https://www.sigmoid.com/blogs/gpt-3-all-you-need-to-know-about-the-ai-language-model/">into simpler summaries</a> for early-stage readers. ChatGPT could be considered an “assistive technology” if it assists people with communication disability to get their message across more efficiently or effectively. </p>
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<a href="https://images.theconversation.com/files/501006/original/file-20221214-6441-pkk4by.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="chat gpt text box" src="https://images.theconversation.com/files/501006/original/file-20221214-6441-pkk4by.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/501006/original/file-20221214-6441-pkk4by.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=194&fit=crop&dpr=1 600w, https://images.theconversation.com/files/501006/original/file-20221214-6441-pkk4by.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=194&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/501006/original/file-20221214-6441-pkk4by.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=194&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/501006/original/file-20221214-6441-pkk4by.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=244&fit=crop&dpr=1 754w, https://images.theconversation.com/files/501006/original/file-20221214-6441-pkk4by.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=244&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/501006/original/file-20221214-6441-pkk4by.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=244&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Chat Pic.</span>
<span class="attribution"><span class="source">Author</span></span>
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<h2>A user perspective</h2>
<p>As a qualified lawyer and a person with cerebral palsy and no speech, co-author Fiona Given relies on assistive communication technologies, including <a href="https://www.asha.org/public/speech/disorders/aac/">augmentative and alternative communication</a> speech-generating devices. Fiona says: </p>
<blockquote>
<p>[…] each word and message that I compose takes me substantially more time and effort than a person who speaks. So I economise on that, and my written messages using current assistive technologies are often short and to the point. This can cause many problems, as I may be perceived as curt, if not rude, and I’m also not fully explaining what I mean.</p>
</blockquote>
<p>Having tested the system, Fiona says ChatGPT could be particularly useful in adding the polite parts of emails and letters. </p>
<blockquote>
<p>It can save me time and effort whilst maintaining my professionalism. One day, AI like ChatGPT may be installed into my speech-generating device. Yes, it raises questions of authorship and brings in doubt over who did the writing. That’s the case also with word prediction software – who thought of the word first? I see it as a type of co-authorship, and people like me will still need to be able to read and check it reflects what they want to say and edit and authorise the output accordingly. </p>
</blockquote>
<p>AI technologies like ChatGPT may help people with communication disability to:</p>
<ul>
<li>expand on short sentences, saving time and effort</li>
<li>draft or improve texts for emails, instructions, or assignments</li>
<li>suggest scripts to practice or rehearse what to say in social situations</li>
<li>model how to be “more polite” or “more direct” in written communication </li>
<li>practice conversations, including asking and answering questions</li>
<li>correct errors in texts produced for a range of purposes</li>
<li>write a complaint letter, including nuance and outcomes of not taking action </li>
<li>help with making that first approach to a person socially. </li>
</ul>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/504842/original/file-20230117-19-qwsm7x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Man stands holding ipad in group of people talking" src="https://images.theconversation.com/files/504842/original/file-20230117-19-qwsm7x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/504842/original/file-20230117-19-qwsm7x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/504842/original/file-20230117-19-qwsm7x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/504842/original/file-20230117-19-qwsm7x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/504842/original/file-20230117-19-qwsm7x.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/504842/original/file-20230117-19-qwsm7x.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/504842/original/file-20230117-19-qwsm7x.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">AI could suggest scripts for conversations.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com.au/detail/photo/man-with-down-syndrome-host-a-meeting-royalty-free-image/1332414656?phrase=disability%20communication&adppopup=true">Getty/Jessie Casson</a></span>
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<h2>Future AI must be inclusive and accessible</h2>
<p>Given its potential for text-based assistance, it is important to know if people with communication disability will be able to access chatbots like ChatGPT. </p>
<p>We don’t know how many of the one million users testing the ChatGPT system now have problems with literacy, written expression, or spelling. But so far it looks like a game changer to help people produce texts with little or less effort. </p>
<p>The experiences of people with communication disability in using AI like ChatGPT are vital in the future co-design of assistive technologies. We need to know more about their views on acceptability, usability, and authenticity of the messages produced. With a screen reader, the ChatGPT output could become the user’s “voice”. So being able to check, edit, and confirm or reject AI writing is vital. Any incremental improvements to chat bots, that take into account what helps and hinders access and inclusion, are important if people with communication disability are going to benefit <a href="https://ieeexplore.ieee.org/document/9315920">from advancements in AI</a>. </p>
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<img src="https://counter.theconversation.com/content/196481/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Bronwyn Hemsley has received research grant funding from the Australian Research Council and the National Disability Insurance Scheme Quality & Safeguards Commission for work unrelated to this article.</span></em></p><p class="fine-print"><em><span>Emma Power receives funding from National Health and Medical Research Council and the Medical Research Future Fund.
She is a member of Speech Pathology Australia.</span></em></p><p class="fine-print"><em><span>Fiona Given does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>To help people with communication disability, AI like ChatGPT needs to be accessible and inclusive from the start.Bronwyn Hemsley, Professor of Speech Pathology, University of Technology SydneyEmma Power, Associate Professor in Speech Pathology, University of Technology SydneyFiona Given, Assistant researcher, University of Technology SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1803992022-03-31T09:01:23Z2022-03-31T09:01:23ZWhat is aphasia, the condition Bruce Willis lives with?<p>After a career spanning 40 years, 67-year-old Bruce Willis has stepped away from acting due to health issues, including a diagnosis of aphasia. </p>
<p>Willis’ family released a <a href="https://www.instagram.com/p/Cbu-mD7LMPg/?utm_source=ig_web_copy_link">heartfelt statement via Instagram today</a> to let fans know.</p>
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<p>Never heard of aphasia? You’re not alone. </p>
<p>Aphasia is a communication disability caused by damage or changes to the language networks of the brain. </p>
<p>Often considered a difficulty with “getting words out”, aphasia can in fact impact every aspect of a person’s life.</p>
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Read more:
<a href="https://theconversation.com/in-a-chatty-world-losing-your-speech-can-be-alienating-but-theres-help-121943">In a chatty world, losing your speech can be alienating. But there's help</a>
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<h2>How does aphasia affect people?</h2>
<p>A person with aphasia can have difficulty speaking, understanding others, reading, writing and using numbers. </p>
<p>Aphasia impacts everything from conversations, negotiating, expressing emotions, storytelling, asking questions, to writing an email. </p>
<p>When communication is affected, so is the ability to share information, engage in relationships and interact meaningfully with the world. </p>
<p>Aphasia can <a href="https://www.tandfonline.com/doi/abs/10.1080/02687038.2014.928664?journalCode=paph20#:%7E:text=In%20particular%2C%20those%20with%20aphasia,">change relationships</a> with family and friends, <a href="https://www.tandfonline.com/doi/abs/10.1080/02687030701640941">make it harder</a> to get out and do things (such as use public transport or do the shopping), affect <a href="https://www.tandfonline.com/doi/full/10.1080/02687038.2019.1594151">self-identity</a> and, as for Willis, can impact <a href="https://www.tandfonline.com/doi/abs/10.1080/02687038.2011.563861?journalCode=paph20">the ability to work</a>.</p>
<p>Depression and other negative mood changes <a href="https://www.tandfonline.com/doi/abs/10.1080/02687038.2019.1673304">are common</a> in people with aphasia, as is a reduction in their <a href="https://journals.lww.com/lww-medicalcare/Fulltext/2010/04000/The_Relationship_of_60_Disease_Diagnoses_and_15.14.aspx">self-perceived quality of life</a>. </p>
<h2>What causes aphasia and how common is it?</h2>
<p>Different types of aphasia can result from different brain conditions, most commonly stroke but also <a href="https://www.stroke.org.uk/what-is-aphasia/types-of-aphasia">brain tumour</a>, traumatic brain injury, and types of dementia, such as <a href="https://my.clevelandclinic.org/health/diseases/17387-primary-progressive-aphasia-ppa#:%7E:text=Primary%20progressive%20aphasia%20(PPA)%20can,before%20going%20to%20the%20doctor.">primary progressive aphasia</a>. </p>
<p>So there is a wide range of variability in the severity and types of communication affected.</p>
<p>Primary progressive aphasia can occur in younger people, but is <a href="https://my.clevelandclinic.org/health/diseases/17387-primary-progressive-aphasia-ppa#:%7E:text=Primary%20progressive%20aphasia%20(PPA)%20can,before%20going%20to%20the%20doctor">most commonly diagnosed</a> between age 50 and 75. </p>
<p><a href="https://linkinghub.elsevier.com/retrieve/pii/S0003999316300417">One-third of people</a> who have had a stroke will also experience aphasia. </p>
<p>While it’s most likely to affect older adults, brain injuries, strokes and tumours causing aphasia can also affect <a href="https://www.childneurologyfoundation.org/disorder/aphasia/">children</a>, <a href="https://pubmed.ncbi.nlm.nih.gov/27538892/">adolescents</a> and <a href="https://www.frontiersin.org/10.3389%2Fconf.fnhum.2019.01.00094/event_abstract">young adults</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-brain-regions-control-our-language-and-how-do-we-know-this-63318">What brain regions control our language? And how do we know this?</a>
</strong>
</em>
</p>
<hr>
<p>Based on <a href="https://www2.deloitte.com/content/dam/Deloitte/au/Documents/Economics/deloitte-au-dae-economic-impact-stroke-report-061120.pdf">current stroke statistics</a>, it is estimated that at least 140,000 Australian live with aphasia.</p>
<p>Despite the high rates and evidence of negative impacts, awareness of aphasia in the public and health-care professions <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7731675/">is low</a>. </p>
<h2>What else plays a role?</h2>
<p>A person’s environment <a href="http://aphasiology.pitt.edu/1762/1/185.pdf">has a big impact</a> in enabling or disabling people with aphasia. </p>
<p>The <a href="https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1">social determinants of health</a> influence the way someone experiences, recovers from, and lives with aphasia. </p>
<p>So people who have good access to health care, who hold high social positions, are wealthy, and have the support of an engaged family may be less impacted by the condition. Willis can be grateful in this respect.</p>
<p>The impact of aphasia is not just felt by the person with aphasia. The <a href="https://www.tandfonline.com/doi/abs/10.1080/02687038.2013.768330">psychological and social impact, as well as the disability</a> resulting from aphasia on the family is significant. </p>
<h2>How is it treated?</h2>
<p>There is no cure for aphasia. But <a href="https://www.tandfonline.com/doi/abs/10.1080/09638288.2021.2012843?journalCode=idre20">interventions</a> such as speech pathology can <a href="https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD000425.pub4/full">make a massive difference</a>. Though there is no “one size fits all” approach. </p>
<p>Speech pathologists are <a href="https://www.speechpathologyaustralia.org.au/SPAweb/Resources_for_the_Public/What_is_a_Speech_Pathologist/SPAweb/Resources_for_the_Pubic/What_is_a_Speech_Pathologist/What_is_a_Speech_Pathologist.aspx?hkey=7e5fb9f8-c226-4db6-934c-0c3987214d7a">experts in communication disabilities</a>. They work within multidisciplinary health-care teams across a variety of hospital and community-based sites. This includes working with medical, nursing and allied health professionals such as psychologists, occupational therapists, social workers and physiotherapists. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-can-all-help-to-improve-communication-for-people-with-disabilities-101199">We can all help to improve communication for people with disabilities</a>
</strong>
</em>
</p>
<hr>
<p>Interventions for people with <a href="https://www.tandfonline.com/doi/full/10.1080/09638288.2022.2051080">progressive</a> and <a href="https://www.latrobe.edu.au/research/centres/health/aphasia/research/treatment-effectiveness">post-stroke</a> aphasia are tailored to the person, their family and community, with consideration of many factors including aphasia diagnosis and cause, severity and type of communication difficulties, level of participation in communication-related activities, the communication environment, their goals, mood and quality of life. </p>
<p>New and improved treatments are also <a href="https://www.latrobe.edu.au/research/centres/health/aphasia/research">being developed</a>. </p>
<h2>Do I have aphasia? What should I look out for?</h2>
<p>Sudden or gradual decline and changes in communication, personality, behaviour, memory and thinking skills should be investigated by a doctor. This could be a local GP, neurologist or geriatrician. A speech pathologist can also be a part of this process.</p>
<p>Be aware of the signs of stroke and aphasia associated with dementia. This may include difficulty finding the right word, mixing up words or sounds (for example, “cat” or “gog” for “dog”), using nonsense words, not being able to get any words out or not being able to understand others. If these changes are sudden or accompanied by a facial droop or difficulty moving your arms or legs, treat it as a medical emergency and <a href="https://strokefoundation.org.au/About-Stroke/Learn/signs-of-stroke">seek urgent medical attention</a>. </p>
<p>Willis and his family demonstrate love and strength in facing aphasia “head on”. Their sentiments of embracing social connectedness and to continue to live by Willis’ words of “Live it up” provide hope for others with aphasia around the world.</p>
<p>We can all play our part in being <a href="https://www.aphasia.ca/communication-tools-communicative-access-sca/">more effective communication partners</a> for people living with aphasia.</p><img src="https://counter.theconversation.com/content/180399/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Abby Foster receives funding from La Trobe University and the Centre of Research Excellence in Ear & Hearing Health of Aboriginal and Torres Strait Islander Children. She is an affiliate of the Centre of Research Excellence in Aphasia Recovery & Rehabilitation </span></em></p><p class="fine-print"><em><span>Caroline Baker receives funding from Stroke Foundation and Speech Pathology Australia. She is an affiliate of the Centre of Research Excellence in Aphasia Recovery & Rehabilitation </span></em></p>Bruce Willis’ family today revealed he has been diagnosed with aphasia. So what actually is aphasia and why haven’t we heard of it before?Abby Foster, Allied Health Research Advisor, Monash HealthCaroline Baker, Speech Pathology Research and Clinical Practice Lead, Monash HealthLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1471932021-02-25T00:59:07Z2021-02-25T00:59:07ZFor teens, getting access to speech pathology services depends on where you live<figure><img src="https://images.theconversation.com/files/363821/original/file-20201015-19-grs0l4.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5524%2C3026&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p><a href="https://www.abs.gov.au/AUSSTATS/abs@.nsf/allprimarymainfeatures/7C627E6F478CB6B4CA25849C00174C19?opendocument">Tens of thousands</a> of Australian teenagers live with a communication disability, meaning they struggle with speaking, listening, reading, writing, and/or social skills. </p>
<p>Communication disability can include</p>
<ul>
<li>stuttering</li>
<li><a href="https://radld.org/about/dld/">developmental language disorder</a> and </li>
<li>other <a href="https://theconversation.com/common-myths-about-speech-problems-in-children-38599">speech problems</a>.</li>
</ul>
<p>It can start in early <a href="https://raisingchildren.net.au/guides/a-z-health-reference/communication-impairments?gclid=CjwKCAjw_NX7BRA1EiwA2dpg0tNqJ4hUQhVFVACHZt0R2yVIYv7TTRMRyDe7kYq0GDLiehbhCbnZJRoCRRsQAvD_BwE">childhood</a> and much of Australia’s speech pathology services are geared toward early intervention. </p>
<p>But communication disability can also be <a href="https://theconversation.com/we-can-all-help-to-improve-communication-for-people-with-disabilities-101199">acquired</a> later in life — or can start early but persist into adolescence.</p>
<p>Demand for speech pathology services across Australia is <a href="https://figshare.com/articles/figure/2019_NDIS_data_by_state_territory/13071350">consistently strong</a> but whether or not a teen gets access to speech pathology services may depend largely on where they live.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/common-myths-about-speech-problems-in-children-38599">Common myths about speech problems in children</a>
</strong>
</em>
</p>
<hr>
<h2>Some states better than others</h2>
<p>Our research, <a href="https://www.tandfonline.com/doi/full/10.1080/17549507.2020.1820576">published this week in the International Journal of Speech Language Pathology</a>, highlights how unequally speech pathology services are provided in Australian public schools.</p>
<p>Some states have government-mandated provision, where the education department employs speech pathologists to work in schools or offer some other kind of school-based support.</p>
<p>We surveyed 96 speech pathologists who work with 12-16 year olds. </p>
<p>About 45% of the respondents were from states with government-mandated provision of services (Queensland, South Australia, Tasmania, and Victoria). </p>
<p>The remaining 55% were from states and territories with zero or minimal government-mandated provision (the Australian Capital Territory, New South Wales, and Western Australia). Minimal means government-mandated speech pathology services are usually only provided for the youngest school students.</p>
<p>Northern Territory has minimal government-mandated provision of speech pathology services in public schools. However, no speech pathologists practising in the Northern Territory completed our survey.</p>
<figure class="align-center ">
<img alt="Man teaching to class" src="https://images.theconversation.com/files/370267/original/file-20201119-21-153eeqt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/370267/original/file-20201119-21-153eeqt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/370267/original/file-20201119-21-153eeqt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/370267/original/file-20201119-21-153eeqt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/370267/original/file-20201119-21-153eeqt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/370267/original/file-20201119-21-153eeqt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/370267/original/file-20201119-21-153eeqt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Some states have government-mandated provision, where the education department employs speech pathologists to work in schools.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>We found states with government-mandated speech pathology services (Queensland, South Australia, Tasmania, and Victoria) offer more intervention support for high school students with communication disability than states and territories with zero or minimal government-mandated provision (Australian Capital Territory, New South Wales, and Western Australia).</p>
<p>In states where speech pathology services are not government-mandated, families of teens with communication disability must either seek out expensive private services, sometimes far from home — or miss out altogether.</p>
<p>In states where speech pathology services are government-mandated (Queensland, South Australia, Tasmania, and Victoria), about 49% of speech pathologists were employed in government service roles. In the Australian Capital Territory, New South Wales, and Western Australia, the figure was 15%. </p>
<p>States <em>without</em> government-mandated provision of speech pathology services had a greater proportion of speech pathologists employed in private practice (67% in Australian Capital Territory, New South Wales, and Western Australia compared to 30% in Queensland, South Australia, Tasmania, and Victoria).</p>
<h2>Working collaboratively with school leaders</h2>
<p>Communication disability can affect <a href="https://dldandme.org/school-achievement-and-developmental-language-disorder/">literacy</a> and other <a href="https://pubmed.ncbi.nlm.nih.gov/12120859/">educational outcomes</a>, <a href="https://www.youtube.com/watch?v=-orJLnCgGJw">mental health</a> and <a href="https://pubmed.ncbi.nlm.nih.gov/29139196/">future employment</a>. </p>
<p>Young people with communication disability should have the right to <a href="https://eprints.qut.edu.au/115423/">inclusive education</a> in mainstream classrooms. In many places, speech pathologists <a href="https://www.youtube.com/watch?v=2LUTyZ7zr4Y">work closely with school teachers and principals</a>, and help students either in small groups, one-on-one or sometimes working with the whole class.</p>
<p>Our research highlights that whether or not you can access such help may boil down to what state you’re in.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/2LUTyZ7zr4Y?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
</figure>
<h2>Younger children and speech pathology</h2>
<p>In 2018, the Australian Early Development Census (AEDC), which collects nationwide data on all children in their first year of formal schooling, <a href="https://www.aedc.gov.au/data/data-explorer">found</a> 45,708 Australian children were at risk or vulnerable to challenges in speaking and listening. </p>
<p>Our study builds on previous <a href="https://www.tandfonline.com/doi/abs/10.3109/17549507.2015.1034175?journalCode=iasl20">research</a> showing speech pathology services are not provided equally across Australia for children at the start of school. That’s particularly true for children who live in regional or remote areas, or who are developmentally vulnerable (a group in which children from lower socioeconomic and languages other than English backgrounds are over-represented).</p>
<p>Our research shows this unequal access to speech pathology across Australia continues into adolescence. </p>
<figure class="align-center ">
<img alt="Children in uniform hold sign with caption, 'We are the future'" src="https://images.theconversation.com/files/370261/original/file-20201119-14-68d03a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/370261/original/file-20201119-14-68d03a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=343&fit=crop&dpr=1 600w, https://images.theconversation.com/files/370261/original/file-20201119-14-68d03a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=343&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/370261/original/file-20201119-14-68d03a.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=343&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/370261/original/file-20201119-14-68d03a.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=431&fit=crop&dpr=1 754w, https://images.theconversation.com/files/370261/original/file-20201119-14-68d03a.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=431&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/370261/original/file-20201119-14-68d03a.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=431&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Listening to, and asking, young people about their experiences with communication disability is crucial.</span>
<span class="attribution"><span class="source">pixabay.com</span></span>
</figcaption>
</figure>
<p>Listening to, and asking, young people about their experiences with communication disability is also crucial. There are many <a href="https://eprints.qut.edu.au/131583/">practical ways</a> to consult students about reasonable adjustments that can be made in the classroom to make learning easier. These can include changing the pace or volume of information delivered.</p>
<p>The bottom line is access to speech pathology services for 12-16 year olds in public schools is inconsistent across Australian states and territories. Whether or not you’re able to access this kind of help shouldn’t depend on where you live.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-to-tell-if-your-child-has-a-speech-or-language-impairment-31768">How to tell if your child has a speech or language impairment</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/147193/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nichola Shelton is a certified practising member of Speech Pathology Australia. </span></em></p><p class="fine-print"><em><span>Julia Starling has two commercially available publications, the LINK-S Program Manual, and the LINK-UP Program Manual. She is a certified practicing speech pathologist.</span></em></p><p class="fine-print"><em><span>Natalie Munro is a certified practising member of Speech Pathology Australia. </span></em></p>Access to speech pathology services for 12-16 year olds in public schools is inconsistent across Australian states and territories.Nichola Shelton, PhD candidate, University of SydneyJulia Starling, Adjunct Lecturer, University of SydneyNatalie Munro, Associate Professor and speech pathologist, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1167752019-05-23T09:45:19Z2019-05-23T09:45:19ZWhy a patient may need a companion to speak for them – and the difficult choices they face<p>When a person whose communication is affected by a developmental disability (like Down syndrome or autism) needs to speak with a doctor, they often have to rely on a companion to help them. Whether it’s a family member, a friend, or a professional support worker, that companion has to gauge very carefully what to say and when to say it. </p>
<p>These are discussions which may contain extremely intimate and personal information, and they present a clear challenge for companions, patients and doctors who must manage what can be a very delicate interaction.</p>
<p>For there is a clear dilemma at the heart of what the companion should do. On the one hand, they must respect the patient’s right to tell their own story. After all, it’s their body and their life – so they must have priority in the telling. </p>
<p>But on the other hand, what if the patient doesn’t understand the doctor’s question, or gives an unintelligible answer, or one that the companion knows to be incorrect? In those circumstances, the companion may feel obliged to intervene, at the expense of treading on the patients’ toes. </p>
<p>It’s not an easy dilemma to solve – respect for the patient, versus telling the doctor what they need to know.</p>
<p>To look into this further, we have made a close study of a set of video recordings made in surgeries in a large area of southern England. We didn’t want to rely on retrospective interviews for our research, or even on contemporaneous note taking. The <a href="http://ca-tutorials.lboro.ac.uk/intro.htm">conversation analysis</a> approach we use needs video as a record of what actually went on. It shows all the subtleties that people don’t notice at the time, and can’t recall later.</p>
<p>The patients were people classified in the GP surgery records as having a learning disability, and they brought companions of all kinds. Those companions all faced the same dilemma, but dealt with it in different ways. </p>
<p>In fact, there was a clear spectrum of intervention. At one end, it was just a matter of helping the patient discreetly, and at the other, it was a complete take over of the ongoing discussion.</p>
<p>For example, suppose the doctor asks the patient, “When did you have your most recent eye test?” and the patient struggles to answer intelligibly. At the most discreet end of the spectrum of intervention, the companion may wait a little, then turn to the patient, and hint at the answer by saying something like: “Did we go to the optician’s last week?” </p>
<p>That way of intervening implies that the patient <em>does</em> know the answer, but gives them a very strong hint as to what it is. It’s an intervention in the form of a question that expects a simple answer, making it easy for the patient to provide a clear and firm response to the doctor’s question. This is respectful and also gets the job done.</p>
<p>Halfway along the spectrum is the intervention that accepts what the patient has said, but qualifies it significantly. This respects the patient’s right to have at least started the answer, but is a way of adding important information. </p>
<p>The patient may say: “I can walk up the stairs, yeah,” and the companion may add – again speaking to the patient – “But sometimes it’s a bit difficult, isn’t it?” Again the job is done. The doctor hears the qualification, and all the patient has to do is agree.</p>
<p>At the other end of the spectrum, the companion decides to effectively take over, even before the patient has started to answer the question. You may think that’s because the patient is particularly uncommunicative – but that isn’t always the case. </p>
<h2>Talking (and taking) over</h2>
<p>Sometimes, the companion seems to feel that they have more authority in the matter, and are better judges of what to say. It is as if they simply want to add a splash of colour to the picture of the patient’s life, even though it’s <em>à propos</em> of nothing in particular: “She loves her soap operas,” was one example; “He liked the other doctor he saw because it was a woman,” was another.</p>
<p>Did the patients ever seem to mind? For whatever reason, very rarely. Perhaps they were used to their companions taking over. But on occasions they did signal their displeasure. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/275854/original/file-20190522-187179-cfpky2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/275854/original/file-20190522-187179-cfpky2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/275854/original/file-20190522-187179-cfpky2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/275854/original/file-20190522-187179-cfpky2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/275854/original/file-20190522-187179-cfpky2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/275854/original/file-20190522-187179-cfpky2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/275854/original/file-20190522-187179-cfpky2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Challenging conversations.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-couple-meeting-consultant-hospital-284569523">Shutterstock</a></span>
</figcaption>
</figure>
<p>One example was when a monosyllabic patient had to endure her companion jocularly giving the doctor details of her bowel movements. Without much language, there was little the patient could do – but she threw up her arm as if to shield herself from what her companion was saying. </p>
<p>On a more clear cut occasion, an adult patient, fed up with his mother’s wholesale takeover of the conversation, spluttered out: “Oh do be quiet, Mummy.”</p>
<p>So far, our observations have given us a lot of information about the dilemma that companions face, and how they deal with it. What we can tell doctors is that they too have a part to play. At times, the doctors would subtly (or not so subtly) select the companion as the one to speak next, by a slight shift of eye gaze or body posture, or by simply not following up what the patient said. </p>
<p>Our next step is to engage directly with the people who participate in these delicate conversations. We feel there is much to be gained by patients, doctors, and companions, if questions are made more simple, the patient is given more time, and assistance is given subtly. When that is done, the medical business is successfully achieved, and the patient’s right to tell their own tale remains respected.</p><img src="https://counter.theconversation.com/content/116775/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Deborah Chinn has been funded to do this research by a National Institute for Health Research (NIHR) post doctoral fellowship (grant number PDF-2013-06-060). The article presents independent research funded by NIHR. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. No restrictions on free access to or publication of the research data has been imposed by the funding body.</span></em></p><p class="fine-print"><em><span>Charles Antaki does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>How intrusive can you be when helping someone speak to a doctor?Charles Antaki, Professor of Language and Social Psychology, Loughborough UniversityDeborah Chinn, Lecturer, King's College LondonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1072752019-01-15T19:12:49Z2019-01-15T19:12:49ZWhat you need to know if your child with a disability is starting school soon<figure><img src="https://images.theconversation.com/files/252800/original/file-20190108-32151-1hfxcyi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Parents may need to play the advocate for their child, especially if their child has a disability which affects their ability to communicate.</span> <span class="attribution"><span class="source">www.shutterstock.com</span></span></figcaption></figure><p><em>This is a longer read at just over 1,300 words. Enjoy!</em></p>
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<p>A new school year can be daunting for any parent, prompting many questions: will my child settle in, make friends and progress academically? If your child has a disability these worries can seem too big to overcome. </p>
<p>In Australia, teachers often <a href="https://www.aracy.org.au/publications-resources/command/download_file/id/246/filename/Inclusive_education_for_students_with_disability_-_A_review_of_the_best_evidence_in_relation_to_theory_and_practice.pdf">feel unprepared</a> to support children with disabilities in classrooms. Teaching organisations have <a href="https://www.parliament.sa.gov.au/Committees/Pages/Committees.aspx?CTId=3&CId=320">raised concerns</a> about the large amount of additional time and resources necessary to help children with a disability learn and meet their educational goals. Lack of professional knowledge about the impact disabilities have on a child’s development are often the reason for this concern, along with a lack of confidence about how to cater for the student’s needs. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/students-with-and-without-disability-its-always-better-when-were-together-21014">Students with and without disability: it’s always better when we’re together</a>
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</em>
</p>
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<p>Parents should also be aware a teacher might be concerned about how accepting a child with a disability might negatively affect the academic progress of other children in their class, risking complaint from other parents. <a href="https://cdn.theconversation.com/static_files/files/446/CDA_Issues_Paper_on_Inclusion_%284%29.pdf?1547508273">Research</a> suggests these worries are persistent, but also typically unfounded. </p>
<h2>Talk to your local schools</h2>
<p>The first thing to do is figure out whether your local school can meet your child’s specific needs. This will involve a discussion meeting, usually with the principal as well as the local support officer. </p>
<p>In all communication try not to be emotive, but polite and assertive. Keep records of all communication. Where possible, use email. If you have a meeting or telephone conversation, take a record of the key points and send it to the participants asking for their clarification that it’s an accurate record.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/252794/original/file-20190108-32148-x1sufs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/252794/original/file-20190108-32148-x1sufs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/252794/original/file-20190108-32148-x1sufs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/252794/original/file-20190108-32148-x1sufs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/252794/original/file-20190108-32148-x1sufs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/252794/original/file-20190108-32148-x1sufs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/252794/original/file-20190108-32148-x1sufs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Schools have a legal and moral duty to provide education to students with a disability.</span>
<span class="attribution"><span class="source">from www.shutterstock.com</span></span>
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</figure>
<p>Talk to other parents in the area who also have a child with a disability. Two local schools can have very different responses to supporting children with a disability. </p>
<p>Schools have a legal duty to cater for students with a disability under the <a href="https://docs.education.gov.au/system/files/doc/other/dse-fact-sheet-1-dda_0.pdf">Disability Discrimination Act</a> and the <a href="https://docs.education.gov.au/system/files/doc/other/disability_standards_for_education_2005_plus_guidance_notes.pdf">Disability Standards for Education</a>. But as many parents know, this can fall significantly short in practice. </p>
<p>Admission to a new mainstream school can be a grey zone for inclusion. In some schools, the euphemism “we can’t cater for your child’s needs” is used to recommend sending a child somewhere else. In such extreme circumstances, parents can politely but firmly remind the school of their legal (and moral) responsibility to educate all children.</p>
<h2>Mainstream is best when possible</h2>
<p>Schooling in the mainstream classroom is considered the <a href="https://www.aracy.org.au/publications-resources/command/download_file/id/246/filename/Inclusive_education_for_students_with_disability_-_A_review_of_the_best_evidence_in_relation_to_theory_and_practice.pdf">first and best</a> option when possible in Australia for students with a disability. </p>
<p>One myth which needs to be disposed of immediately is that there is a special, unique method for teaching children with disabilities. This is not the case. Successful teaching for children with disabilities is simply <a href="https://www.researchgate.net/publication/309608290_Chapter_9_The_Ideal_School">very high quality teaching</a>. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/252796/original/file-20190108-32130-llx9xq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/252796/original/file-20190108-32130-llx9xq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=398&fit=crop&dpr=1 600w, https://images.theconversation.com/files/252796/original/file-20190108-32130-llx9xq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=398&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/252796/original/file-20190108-32130-llx9xq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=398&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/252796/original/file-20190108-32130-llx9xq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/252796/original/file-20190108-32130-llx9xq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/252796/original/file-20190108-32130-llx9xq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Parents need to be able to communicate their child’s specific needs to their teacher, for example if they get overwhelmed by too much noise.</span>
<span class="attribution"><span class="source">from www.shutterstock.com</span></span>
</figcaption>
</figure>
<p>Some key features of this excellent practice are: it’s clear and has a predictable structure, motivates the child calling on their interests, and is regularly reviewed against clear objectives to ensure it is effective. </p>
<p>All children have strengths and challenges. These attributes of excellent teaching also greatly benefit children without disabilities. For example, when they’re <a href="https://www.teachermagazine.com.au/articles/using-drama-as-a-tool-for-inclusion-within-the-classroom">learning to read</a> in the first years of primary school. </p>
<h2>Consider what’s best for your child</h2>
<p>If a school is not being supportive at the start, you need to consider whether you want your child to be in an environment of continual conflict and barrier. Luckily, this is a minority attitude in Australian schools. But statistics from a national survey in 2017 show 12% of children with a disability still appear to be <a href="https://cdn.theconversation.com/static_files/files/447/Education_Survey_Summary_2017.pdf?1547509192">refused initial enrolment</a> in their local school. </p>
<p>If the admissions hurdle is simply too difficult, you may decide to send your child to a special school, or even home school. Look at your capability. Can you offer solutions to support the school? Can you make the commitment to teach at home? Is a School for Specific Purpose (SSP) the best setting for your child? Will your child receive a full educational experience? </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-are-your-rights-if-your-child-with-a-disability-is-denied-a-school-place-53500">What are your rights if your child with a disability is denied a school place?</a>
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</em>
</p>
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<p>Special schools don’t come in one format and vary considerably, but they tend to: educate students from reception or prep through to year 12, be attended by students with more severe or multiple forms of disability and deliver a modified curriculum. </p>
<p>This modified curriculum, for instance, might mean expectations of what a student should understand and be able to do at a given age in English, maths, or science are adjusted to their level of intellectual development, rather than being based on levels expected of typically developing children. Many special schools also focus on preparing students for independent living after age 18. </p>
<h2>Parents and teachers working together</h2>
<p>Let’s now assume your child has been accepted into a mainstream school, and you’ve established a cordial parent-teacher relationship with their teacher. The issue now becomes what parents and teachers should know and share about a child’s disability to provide the best chance the child will flourish in school. </p>
<p>Not all parents may be willing or able to undertake this time-consuming role. It’s vital parents and teachers are flexible in their expectations about how much parental involvement is possible in each case. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/252801/original/file-20190108-32124-urtz03.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/252801/original/file-20190108-32124-urtz03.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/252801/original/file-20190108-32124-urtz03.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/252801/original/file-20190108-32124-urtz03.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/252801/original/file-20190108-32124-urtz03.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/252801/original/file-20190108-32124-urtz03.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/252801/original/file-20190108-32124-urtz03.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">When everyone works together, everyone wins.</span>
<span class="attribution"><span class="source">from www.shutterstock.com</span></span>
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</figure>
<p>Some <a href="https://www.monash.edu/__data/assets/file/0016/1412170/Castan-Centre-Improving-Educational-Outcomes-for-Students-with-Disability.pdf">studies</a> suggest schools are too often not receptive to the valuable advice parents have to give about their child. Teachers should consider the parent, at least initially, as an expert on their child’s needs. Parents are a priceless resource in planning, delivering and reviewing their child’s learning. </p>
<p>Listening to parents is especially important for children who have a disability which affects their ability to communicate or understand the world around them. This may include children with autism, intellectual disability or speech and language impairments. </p>
<h2>Parents should do their research</h2>
<p>For parents, doing your own research about the features of the disability that affects your child can help you better relay their needs to teachers, doctors and therapists.</p>
<p>Many parent-led, not-for-profit disability organisations in Australia, the UK and US have excellent public resources to develop your knowledge. For instance, there are great resources for <a href="https://www.autism.org.uk/#">autism</a>, <a href="http://www.speldvic.org.au/research/">dyslexia and other specific learning difficulties</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/nsw-could-lead-the-way-in-educating-students-with-a-disability-80812">NSW could lead the way in educating students with a disability</a>
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</em>
</p>
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<p>The Australian government also provides <a href="https://www.aihw.gov.au/reports/disability/disability-in-australia-intellectual-disability/contents/table-of-contents">high quality, research-based information</a> about, for example, intellectual disability and other relatively common forms of disability. These resources can be a gateway to further reading and discussion with teachers. </p>
<p>One word of caution: parents and teachers should avoid or be ultra-sceptical of claims products or treatments can “cure” disability. Only accept therapies or interventions recommended by registered medical or clinical practitioners, such as occupational therapists, psychiatrists or paediatricians. </p>
<h2>Maintaining strong relationships</h2>
<p>The complexity of the three-way <a href="http://assets.cambridge.org/97811074/39726/frontmatter/9781107439726_frontmatter.pdf">parent-school-child</a> relationship raises the chance of confusion, misunderstanding or communication breakdown. If left unchecked, this can damage the relationship and negatively affect a student’s life in school. All parties need to listen to each other and put the child’s needs first – not the workplace or budget.</p>
<p>There is no universally agreed-upon model of what a good parent-school-child relationship looks like. But <a href="https://docs.education.gov.au/system/files/doc/other/dse-fact-sheet-3-parental-engagement_0.pdf">research</a> offers practical suggestions for parents and teachers:</p>
<ul>
<li><p>communication has to be three way between parents, the student and teacher if there is to be a shared responsibility for supporting the child’s learning </p></li>
<li><p>parents, the student and the teacher have to feel confident they can be honest and open about their views on where each has strengths and weakness</p></li>
<li><p>parents, the student and teacher have to feel their views are valid, will be listened to and, if agreed on, acted upon in good faith. </p></li>
</ul>
<p>When everyone works as a team, everyone wins.</p><img src="https://counter.theconversation.com/content/107275/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Armstrong is affiliated with the British Psychological Society (BPS) and is a Specialist Assessor for the Australian Research Council (ARC) </span></em></p><p class="fine-print"><em><span>David Roy does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>It’s important for the child and their achievement at school that there is a good parent-teacher-student partnership.David Roy, Lecturer in Education, University of NewcastleDavid Armstrong, Senior Lecturer in Special and Inclusive Education, RMIT UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1011992018-08-28T02:24:32Z2018-08-28T02:24:32ZWe can all help to improve communication for people with disabilities<figure><img src="https://images.theconversation.com/files/233060/original/file-20180822-149481-1pbt6ea.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Communication involves a lot more than words. </span> <span class="attribution"><span class="source">from www.shutterstock.com</span></span></figcaption></figure><p>Around 5% of the population, or 1.2 million Australians <a href="http://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4430.0Main%20Features872015?opendocument&tabname=Summary&prodno=4430.0&issue=2015&num=&view=">have a communication disability</a>. Communication disability can arise if a person has a health condition affecting their speech, language, listening, understanding, reading, writing, or social skills.</p>
<p>Communication disability can be lifelong (as for people with cerebral palsy or intellectual disability) or acquired (as for people with stroke and <a href="https://aphasia.org.au/">aphasia</a>, <a href="https://www.mndaust.asn.au/Home.aspx">motor neurone disease</a>, or traumatic <a href="https://www.braininjuryaustralia.org.au/">brain injury</a>). </p>
<p>All people need to be able to communicate in order to work, build relationships, and seek the <a href="https://ndis.gov.au/medias/documents/h1e/h67/8800549863454/Checklist-planning-conversation.pdf">support</a> they need. But they will <a href="https://www.youtube.com/watch?v=Z0B0Ky-9d28&feature=youtu.be">encounter many barriers to taking part and being included</a>.</p>
<p>About <a href="http://www.aphasiapathway.com.au/?name=About-aphasia">30%</a> of stroke survivors have <a href="https://aphasia.org.au/">aphasia</a>, a condition that affects their use of language. Over time, being excluded from conversation erodes social contacts and opportunities for conversation, resulting in loneliness and isolation, depression, anxiety and fear.</p>
<p>People with aphasia <a href="https://www.tandfonline.com/doi/pdf/10.1080/17482620500501883">report feeling alienated, inferior and shamed</a>. They might have difficulty speaking, but are still aware of the world and conversations that happen around them and <a href="http://www.aphasiapathway.com.au/?name=perspectives-of-People-with-aphasia">want to contribute</a>. </p>
<p>Supportive communication partners can <a href="http://www.tbistafftraining.info/SelfStudy/Module_2/2.6.htm">do a lot to help</a> improve communication <a href="https://www.youtube.com/watch?v=5Xyzl97p7hc&feature=youtu.be">access</a> for people with communication disability.</p>
<h2>1. Remove communication barriers</h2>
<p>People with communication disability often report others treat them as though they’re stupid. This negative attitude or expectation is a barrier to <a href="https://www.speechpathologyaustralia.org.au/SPAweb/whats_on/Speak_Up_for_Communication_Rights/SPAweb/What_s_On/Speak_Up_for_Communication_Rights/Speak_Up_for_Communication_Rights.aspx?hkey=411a246a-f554-490b-87fa-d4796160be91">communication</a>. </p>
<p>Regardless of their speech abilities or cognitive skills, everyone has the right to communicate. So treat them the same as you would any other person, talk directly to them, and ask them questions. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/232579/original/file-20180819-165943-blzdzd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/232579/original/file-20180819-165943-blzdzd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/232579/original/file-20180819-165943-blzdzd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/232579/original/file-20180819-165943-blzdzd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/232579/original/file-20180819-165943-blzdzd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/232579/original/file-20180819-165943-blzdzd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/232579/original/file-20180819-165943-blzdzd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/232579/original/file-20180819-165943-blzdzd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Co-author Harmony Turnbull with Fiona Bridger, who has cerebral palsy and uses a speech generating device.</span>
<span class="attribution"><span class="source">Bronwyn Hemsley</span></span>
</figcaption>
</figure>
<h2>2. Prepare for communication success</h2>
<ul>
<li><p>Communication disability is “invisible”, so ask the person or their close ones about how they communicate and what helps them to get their message across</p></li>
<li><p>keep background noise and distractions down, and give the person your full attention</p></li>
<li><p>use facial expressions and gestures to help to convey information, particularly if the person has difficulty understanding speech</p></li>
<li><p>give the person more time to respond, and get comfortable with silence while you <a href="http://praacticalaac.org/praactical/on-not-talking/">wait</a> – the perfect pause takes a little longer than you might be used to, so try counting to ten in your head and leaving that space</p></li>
<li><p>stay attentive and off your phone, unless you’re using the photos or video feature to help. Try using some little words such as “yes” and “mhm” to <a href="https://www.researchgate.net/profile/Nina_Simmons-Mackie/publication/246426733_Communication_strategies_used_by_%27good%27_versus_%27poor%27_speaking_partners_of_individuals_with_aphasia/links/00b7d53b180ce7d8f2000000/Communication-strategies-used-by-good-versus-poor-speaking-partners-of-individuals-with-aphasia.pdf">indicate acknowledgement and show active listening</a>. This can help reduce the frustration and anxiety that comes from struggling to find the right words to say</p></li>
<li><p>if the person uses communication technologies, watch what they’re doing and respond as you would usually. It’s just another way to talk.</p></li>
</ul>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-technology-that-gave-stephen-hawking-a-voice-should-be-accessible-to-all-who-need-it-93418">The technology that gave Stephen Hawking a voice should be accessible to all who need it</a>
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</em>
</p>
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<h2>3. Build a conversation together</h2>
<p>It takes at least two people to have a conversation, and supportive communication partners to <a href="http://sydney.edu.au/health-sciences/tbi-express/collaboration-observation-sheets.pdf">make it a successful one</a>. Give and take turns in a conversation to show respect and interest in what they have to say. If they’re struggling, give a cue or a prompt to help the person think of a word. If you haven’t understood the person, don’t pretend. Let them know you’d like to keep trying. </p>
<p>A person’s <a href="https://www.tandfonline.com/doi/full/10.1080/02699052.2017.1379613">cognitive-communication skills</a> can grow when they experience more opportunities for inclusion in social situations, employment, and education. </p>
<p>People with traumatic brain injuries can also learn <a href="https://www.health.qld.gov.au/__data/assets/pdf_file/0027/674037/cog_cmmunication_strategy_fsw.pdf">strategies</a> to improve their chance of success in conversation. Learning to plan the topics that need to be covered in a conversation, speaking slowly to encourage others to slow down, and finding a quiet place for that important conversation can all help. </p>
<h2>4. Use communication aids and alternative strategies when you talk</h2>
<p>Communication involves more than spoken <a href="https://www.health.qld.gov.au/__data/assets/pdf_file/0033/674178/pragmatics_pro.pdf">words</a>. We can also communicate with gesture, facial expression, body language, and tone of voice. Learn how you use your own non-verbal communication, and try to pick up on <a href="http://www.tbistafftraining.info/SelfStudy/Module_2/2.3.htm">other people’s cues</a>.</p>
<p>The use of sign language, writing, and drawing can all assist someone with communication disability to understand, and express themselves. <a href="https://www.scopeaust.org.au/key-word-sign-australia/">Key Word Sign</a>, a system for using hand signs and gestures as you speak, uses signs from <a href="http://www.auslan.org.au/">Auslan</a>. The idea is to encourage language use and growth, and help people understand the meaning in a sentence. You can use the online <a href="http://www.auslan.org.au/">Auslan Signbank</a> <a href="http://www.auslan.org.au/about/dictionary/">dictionary</a> to learn some of these signs.</p>
<p>Speech devices are technologies designed to help <a href="http://aacvoice.org.au/">everyone</a> communicate. But having a speech device and knowing how to use it is <a href="https://theconversation.com/the-technology-that-gave-stephen-hawking-a-voice-should-be-accessible-to-all-who-need-it-93418">only the start</a>. </p>
<p>It takes persistence and <a href="https://www.youtube.com/watch?v=T2YJYVYYhfI">a keen sense of humour</a> to navigate a world in which people can respond <a href="https://www.youtube.com/watch?v=ULf2Xzo2-4w">inappropriately</a> when you use the technology. People with communication disability ultimately need a willing and responsible community to access their <a href="https://www.tandfonline.com/doi/full/10.1080/17549507.2018.1428687">communication rights</a>.</p>
<p>Communication access in any environment paves the way for people with communication disability to engage, interact, and take part – to be involved in whatever is going on. It’s just as important as physical access for people who have a physical disability. </p>
<p>So next time you meet someone with a communication disability, find out how they get their message across, and try having a conversation.</p><img src="https://counter.theconversation.com/content/101199/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Bronwyn Hemsley receives funding from The National Health and Medical Research Council and Australian Research Council. She is affiliated with The International Society for Augmentative and Alternative Communication, Speech Pathology Australia, and the American Speech-Language and Hearing Association.</span></em></p><p class="fine-print"><em><span>Harmony Turnbull is affiliated with Speech Pathology Australia as a practicing member and volunteer on the ACT/NSW Branch in the capacity of Branch Vice Chair. She is associated with Key Word Sign NSW through the state committee and a KWS State Trainer. She also attends AAC Voice committee meetings.</span></em></p><p class="fine-print"><em><span>Melissa Brunner receives a University of Technology Sydney Graduate School of Health Postgraduate Research Support Scholarship funded through the Australian Government Research Training Program.</span></em></p><p class="fine-print"><em><span>Joanne Steel and Lucy Bryant do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>There’s a lot we can do to make society more accessible for people with communication disability.Bronwyn Hemsley, Professor of Speech Pathology, University of Technology SydneyHarmony Turnbull, Associate lecturer, University of Technology SydneyJoanne Steel, Postdoctoral Research Associate, University of Technology SydneyLucy Bryant, Postdoctoral Research Associate in Speech Pathology, University of Technology SydneyMelissa Brunner, PhD Candidate and Research Associate, University of Technology SydneyLicensed as Creative Commons – attribution, no derivatives.