tag:theconversation.com,2011:/au/topics/intellectual-disability-1106/articlesIntellectual disability – The Conversation2023-12-01T13:38:43Ztag:theconversation.com,2011:article/2125172023-12-01T13:38:43Z2023-12-01T13:38:43ZThese programs make college possible for students with developmental disabilities<figure><img src="https://images.theconversation.com/files/560916/original/file-20231121-24-bz6l3j.jpg?ixlib=rb-1.1.0&rect=17%2C35%2C5832%2C3838&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Employment prospects are greatly enhanced for students with developmental delays if they acquired postsecondary education.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/man-with-down-syndrome-graduating-royalty-free-image/1346470556?phrase=college+graduation+and+intellectual+disability+&adppopup=true">Drs Producoes via Getty Images</a></span></figcaption></figure><p>For students with intellectual and developmental disabilities, opportunities to attend college may appear few and far between. But this is changing, thanks to <a href="https://www2.ed.gov/policy/speced/guid/increasing-postsecondary-opportunities-and-success-09-17-2019.pdf">inclusive postsecondary education</a> – known as IPSE – programs at colleges across the United States. Here are some important things to know about these programs.</p>
<h2>What is inclusive postsecondary education?</h2>
<p><a href="https://www2.ed.gov/policy/speced/guid/increasing-postsecondary-opportunities-and-success-09-17-2019.pdf">Inclusive postsecondary education</a> refers to programs at colleges and technical schools that provide career and transitional training to people with intellectual and developmental disabilities. Transitional training helps these individuals move into adulthood, teaching them skills like how to set up a bank account, do laundry or cook for themselves.</p>
<h2>How many of these programs exist nationwide?</h2>
<p>Today, only <a href="https://thinkcollege.net/resource/advocacy-outreach/my-college-life-students-with-intellectual-disability-share-their-lived">about 2%</a> of the approximately 420,000 eligible children with intellectual disabilities attend an IPSE program after high school. But the number of these programs at U.S. colleges and universities has more than doubled since 2009, <a href="https://gcdd.org/about/105-general-content/3056-inclusive-post-secondary-education-ipse.html">from 148 to 328</a>. Every state <a href="https://thinkcollege.net/college-search">except for Wyoming</a> has at least one such program, while states like California, Texas, New York, Florida and Massachusetts have numerous programs.</p>
<h2>How did inclusive postsecondary education become important?</h2>
<p>As recently as the 1970s, students with intellectual and developmental disabilities did not have equal access to public primary and secondary schools. The disparity was so glaring, <a href="https://thinkcollege.net/sites/default/files/files/resources/Insight_12_R.pdf">parents in 26 states filed lawsuits</a> to assert their children’s right to a public education.</p>
<p>In 1975, <a href="https://sites.ed.gov/idea/IDEA-History#:%7E:text=On%20November%2029%2C%201975%2C%20President,and%20locality%20across%20the%20country">Congress passed a law</a> now known as the <a href="https://sites.ed.gov/idea/">Individuals with Disabilities Education Act</a> – or IDEA – which makes a free public education available to students with intellectual and developmental disabilities. From 1975 through 2021, the U.S. education system went from excluding 1.8 million children with disabilities to <a href="https://sites.ed.gov/idea/about-idea/#IDEA-History">providing more than 7.5 million children</a> with an education.</p>
<p>Under the Individuals with Disabilities Education Act, most disabled students are <a href="https://sites.ed.gov/idea/files/postsecondary-transition-guide-august-2020.pdf">required to have a detailed plan</a> in place, no later than the age of 16, for how they will transition to adulthood. These plans must describe any resources needed for the transition period. Inclusive postsecondary education programs are considered one of the available resources.</p>
<h2>How do inclusive postsecondary education programs work?</h2>
<p>These programs focus on academic access, career development, campus membership and self-determination. Many programs use person-centered planning. This allows students to guide their own education. Students may work toward a certificate. However, inclusive postsecondary education programs do not lead to a college degree.</p>
<p>I teach at Kennesaw State University, where I serve as executive director of the oldest and largest of nine IPSE programs in Georgia: <a href="https://wellstarcollege.kennesaw.edu/academy/index.php">the Academy for Inclusive Learning and Social Growth</a>. The academy currently enrolls 48 students.</p>
<p>Students may attend the academy for two years or four. Years one and two constitute the <a href="https://wellstarcollege.kennesaw.edu/academy/certifications/details-asce.php">Academic, Social, and Career Enrichment Program</a>. Years three and four are known as the <a href="https://wellstarcollege.kennesaw.edu/academy/certifications/details-alcd.php">Advanced Leadership and Career Development Program</a>. After successfully completing the first two years, students may be invited back for the second two years. Students in each program earn a certificate that is recognized by the Georgia Board of Regents. </p>
<p>To complete a certificate, students must take 16 courses over four semesters. They must also successfully complete an internship and register social interaction hours. Each semester, students audit at least one course alongside their neurotypical peers. To graduate, students also must complete at least two additional trainings in the areas of culinary skills, computer technology, customer service or social media.</p>
<p>The academy provides extensive student support. Program advisers make sure that students excel and have their academic and social needs met. Course accommodations are made based on each student’s reading level and retention. Every student is assigned a <a href="https://wellstarcollege.kennesaw.edu/academy/mentor.php">peer mentor</a>. The mentor accompanies them to classes and social gatherings. </p>
<h2>Who is eligible for inclusive postsecondary education programs?</h2>
<p>Admission requirements vary between different programs. For example, the academy where I work requires a minimum of a third grade reading level and the absence of significant behavioral problems. The academy also requires the completion of a psychological exam, a copy of any individualized education plan and an academic transcript. Most important, though, is the student’s desire to participate and complete all of the academic, social and career <a href="https://wellstarcollege.kennesaw.edu/academy/admission/criteria-process.php">requirements for the certificate</a>.</p>
<h2>Do inclusive postsecondary education programs make a difference?</h2>
<p>As a program director, one of the biggest benefits that I see is that students develop friend groups, often for the first time, and are able, depending upon the program, to live independent of their parents. At Kennesaw State University, about 75% of our 48 students reside on campus in university housing with a roommate. </p>
<p>There are a number of other <a href="https://journals.sagepub.com/doi/10.1177/00224669211013354">benefits</a> of inclusive postsecondary education programs. Research by Think College, a national research and evaluation center, indicates that a student who completes an inclusive postsecondary education program has a <a href="https://thinkcollege.net/sites/default/files/files/resources/teachers_can_F_918.pdf">65% chance of being employed within one year</a>. This is compared with the 17% national employment rate for adults with a developmental or intellectual disability. Anecdotal evidence suggests that students in these programs have high rates of attendance and graduation. For example, the Academy for Inclusive Learning and Social Growth has an 85% graduation rate for students in our two-year program.</p>
<p>Despite all the benefits I’ve observed in my role, <a href="https://www.centre-ipse.org/uploads/6/2/0/8/62081869/mossoff_j_greenholt_j_hurtado_t_2009_assesment_ipse_young_adlts_with_dd.pdf">assessing all the elements of success</a> across the field is still a challenge. That’s because these programs are complex, relatively new, and every program is different.</p>
<h2>How do I learn more?</h2>
<p>Families can learn more about IPSE programs by viewing the <a href="https://thinkcollege.net/college-search">Think College</a> website and also by contacting the disability and <a href="https://rsa.ed.gov/about/states">vocational rehabilitation agencies</a> in their states.</p><img src="https://counter.theconversation.com/content/212517/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Neil Edwin Duchac II- The Academy for Inclusive Learning and Social Growth receives funding from the Georgia Council on Developmental Disabilities.</span></em></p>Inclusive postsecondary education programs help students with intellectual disabilities make friends and become independent adults.Neil Edwin Duchac II, Associate Professor of Social Work and Human Services, Kennesaw State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2148922023-10-17T15:09:58Z2023-10-17T15:09:58ZPeople with intellectual disability are often diagnosed with cancer when it is already well advanced<figure><img src="https://images.theconversation.com/files/554240/original/file-20231017-17-a0uhr1.jpg?ixlib=rb-1.1.0&rect=0%2C6%2C4089%2C2146&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-meeting-patient-office-giving-medical-1873762048">Stokkete/Shutterstock</a></span></figcaption></figure><p>Many people with intellectual disability are diagnosed with cancer <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8948391/">when it has already spread</a> (metastasized) and the odds of survival are lower.</p>
<p>Intellectual disability is a <a href="https://www.psychiatry.org/patients-families/intellectual-disability/what-is-intellectual-disability#:%7E:text=Intellectual%20disability%20is%20a%20life,to%20thrive%20throughout%20their%20lifetime.">lifelong condition</a> that occurs before adulthood where people have a reduced ability to understand new or complex information, learn new skills and cope independently. In the UK it is called “learning disability”.</p>
<p>Cancer has been reported as the cause of death <a href="https://acsjournals.onlinelibrary.wiley.com/doi/10.1002/cncr.34030">about 1.5 times more often</a> among people with intellectual disability than people without it. In a recent study, my colleagues and I found that cancer is the <a href="https://bmjopen.bmj.com/content/13/5/e065745">second leading cause of death</a> in Ireland for people with intellectual disability who live in residential care homes.</p>
<p>Cancers tend to be found late in this cohort for a number of reasons. One of these is the <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/jir.12353">attitudes of healthcare staff</a>, who may be influenced by stigma, previous negative experiences and communication barriers.</p>
<p>Other problems include underestimating the severity of a person’s symptoms or assuming that the symptoms are to do with their intellectual disability rather than having a <a href="http://www.intellectualdisability.info/changing-values/diagnostic-overshadowing-see-beyond-the-diagnosis">biological cause</a>. For example, if a person sees a doctor because they are self-harming, the doctor might assume that it’s related to the patient’s intellectual disability rather than a sign of distress caused by other symptoms they can’t verbalise.</p>
<p>Many people in this population have a higher chance of developing cancer and having worse outcomes because they have more long-term health issues with high rates of <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/jir.12900">obesity</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9020532/#:%7E:text=Adults%20with%20an%20intellectual%20disability%20(ID)%20have%20poorer%20health%20than,inactivity%20contribute%20to%20poorer%20health.">physical inactivity</a>, and <a href="https://www.cambridge.org/core/services/aop-cambridge-core/content/view/FAA6A2056D942D333CDDEE5892B1DA6C/S2056472400002337a.pdf/prevalence_of_mental_health_conditions_and_relationship_with_general_health_in_a_wholecountry_population_of_people_with_intellectual_disabilities_compared_with_the_general_population.pdf">mental health issues</a>. They are more likely to be <a href="https://pubmed.ncbi.nlm.nih.gov/17563898/">poor</a>, <a href="https://www.emerald.com/insight/content/doi/10.1108/TLDR-03-2019-0014/full/html#:%7E:text=with%20family%20members.-,Discussion,is%20that%20outcomes%20remain%20poor.">unemployed</a> and <a href="https://www.sciencedirect.com/science/article/pii/S0891422218302373?casa_token=HBUMzi3t-DQAAAAA:j7fosrPJbsESH0HWbVCrH9GIfBXYrVJy3rRvqsZYBuimql5H2v217P5mD9_Bd-cxCNSlGTS8UA">lonely</a> and their housing situation also tends to be <a href="https://inclusionireland.ie/wp-content/uploads/2020/11/housing-position-report.pdf">precarious</a>. Some studies have found that they are less likely to take part in cancer <a href="https://journals.sagepub.com/doi/full/10.1177/0969141319870221">screening programmes</a>.</p>
<figure class="align-center ">
<img alt="Person playing a videogame in the dark" src="https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/554242/original/file-20231017-21-lq4s9z.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">People with intellectual disability can often be socially isolated and physically inactive.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-gamer-playing-video-game-wearing-624801452">sezer66/Shutterstock</a></span>
</figcaption>
</figure>
<p>People with intellectual disability often have <a href="https://www.sciencedirect.com/science/article/abs/pii/S0891422219302240?via%3Dihub">poor communication skills</a>. This can stop them from being able to get their point across about the symptoms they are experiencing. So it is up to healthcare professionals to identify signs of illness, which can be difficult.</p>
<p>When all these risks are combined, it is clear why people with this disability may experience delayed cancer diagnosis – or even no diagnosis at all.</p>
<h2>Making reasonable adjustments</h2>
<p>In England, <a href="https://bmjopen.bmj.com/content/12/3/e056974">recent research</a> found that over 40% of adults with intellectual disability who died from bowel cancer died before they reached the age for cancer screening.</p>
<p>To improve cancer care, health professionals need to make <a href="https://bmjopen.bmj.com/content/11/2/e039647">reasonable adjustments</a> for this group of people. These adjustments could include screening at an earlier age, giving them longer appointments, making information accessible so they can understand it, involving them in decision-making, and providing a <a href="https://healthservice.hse.ie/filelibrary/onmsd/hse-health-passport-for-people-with-intellectual-disability.pdf">hospital passport</a> that includes details about their abilities and needs and general health.</p>
<p>In England, healthcare professionals receive <a href="https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism">mandatory training</a> on people with intellectual disability. The training provides an overview and awareness of the support that they need and ensures that health and social care staff have the right skills and knowledge to provide care for them. </p>
<p>This training on a national level is unique and could be used in Ireland and other countries to help improve healthcare for people with this disability.</p>
<p>People in this cohort are <a href="https://www.irishexaminer.com/news/spotlight/arid-41217634.html">living longer</a> but <a href="https://pubmed.ncbi.nlm.nih.gov/34673770/">getting</a> cancer and <a href="https://pubmed.ncbi.nlm.nih.gov/34787906/">dying</a> from it at a higher rate than other people. To detect cancer early and increase their chances of survival there needs to be recognition by health and care staff that this population experience greater challenges and risks and is more vulnerable to receiving late-stage diagnosis. </p>
<p>Increased uptake of cancer screening, reasonable adjustments and training are urgently needed to make this situation better.</p><img src="https://counter.theconversation.com/content/214892/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Martin McMahon 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>People with intellectual disability are 50% more likely to die from cancer than the general population.Martin McMahon, Assistant Professor in Intellectual Disability Nursing, Trinity College DublinLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2108892023-10-16T19:05:50Z2023-10-16T19:05:50Z‘They treat you like an it’: people with intellectual disability on seeing medical professionals<figure><img src="https://images.theconversation.com/files/540665/original/file-20230802-25-nm2xby.jpg?ixlib=rb-1.1.0&rect=0%2C28%2C9475%2C6274&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><blockquote>
<p>They don’t treat you like a person. They treat you like an ‘it’.</p>
</blockquote>
<p>This was how Richard*, who has an intellectual disability, described his general experiences with medical professionals. </p>
<p>He was among 18 adults with intellectual disability and eight support people we spoke to for a <a href="https://www.nature.com/articles/s41431-023-01282-3">study</a> on how people with intellectual disability have experienced medical care. We were especially interested in experiences with genetic health care (where, for example, a person may get genetic testing to learn more about their disability).</p>
<p>This work, part of a broader body of <a href="https://geneequal.com">research</a> on intellectual disability and medical care, has revealed an urgent need to shift the deeply entrenched assumptions many health-care workers often hold about patients with intellectual disability. </p>
<p>Our research suggests health professionals need training to deliver more inclusive, person-centred and respectful health care.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/does-my-child-have-a-learning-disability-36550">Does my child have a learning disability?</a>
</strong>
</em>
</p>
<hr>
<h2>Centring lived experience from the outset</h2>
<p>This work demanded a different type of research. </p>
<p>Our team included not just genetics researchers, bioethicists and disability education researchers but also adjunct lecturer Julie Loblinzk OAM, a mother and self-advocate leader with intellectual disability (who is also a co-author on this article). </p>
<p>Together, we formed the inclusive research group <a href="https://geneequal.com/">GeneEQUAL</a>.</p>
<p>We set out to involve people with lived experience of intellectual disability in the project design, implementation and interpretation. </p>
<p>We’ve now produced a number of <a href="https://geneequal.com/geneequal/resources/">studies</a> revealing the startling extent to which people with intellectual disability are often excluded from discussions about their own health. </p>
<p>People with intellectual disability told us how they generally felt <a href="https://www.nature.com/articles/s41431-023-01282-3">cut out of their own health-care</a> appointments, as health-care practitioners often spoke to their support person or family member instead of to them.</p>
<p>Many spoke of how little effort health-care professionals often put in to use accessible language or offer easy-to-read materials. As Lillian told us:</p>
<blockquote>
<p>It’s very hard to read the form? Even my mum found it hard to read.</p>
</blockquote>
<p>This meant people with intellectual disability were often unsure why they were having a genetic test at all. </p>
<p>Many felt excluded from decisions about consent for genetic tests, or even what was talked about in the appointment. </p>
<p>The video below shows an all-too-common experience for people with intellectual disability seeing a doctor for genetic testing.</p>
<figure>
<iframe src="https://player.vimeo.com/video/808199794" width="500" height="281" frameborder="0" webkitallowfullscreen="" mozallowfullscreen="" allowfullscreen=""></iframe>
</figure>
<p>The next video, by contrast, shows what accessible, inclusive and respectful practice would look like.</p>
<figure>
<iframe src="https://player.vimeo.com/video/808241579" width="500" height="281" frameborder="0" webkitallowfullscreen="" mozallowfullscreen="" allowfullscreen=""></iframe>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/hospitals-only-note-a-persons-intellectual-disability-20-of-the-time-so-they-dont-adjust-their-care-180590">Hospitals only note a person's intellectual disability 20% of the time – so they don't adjust their care</a>
</strong>
</em>
</p>
<hr>
<h2>Post-diagnosis support is often lacking</h2>
<p>Genetic counselling is often emotionally triggering. It touches on deeply personal issues of identity, health implications for children and extended family, and future health. For example, after a genetic diagnosis Katrina said: </p>
<blockquote>
<p>I feel like I’m not normal now. And I’ve told people about it, and they’re my friends and family and they don’t mean to pick on me about it, but they look like, ‘You’re just a retard. You’re not all there now’.</p>
</blockquote>
<p>Three participants said they’d considered suicide after their diagnosis. </p>
<p>However, people with intellectual disability told us they were rarely connected with appropriate psychological supports after their diagnosis. There is also a shortage of these kinds of supports. One interviewee, Katarina, told us:</p>
<blockquote>
<p>you’ve got to watch the way you present things to us, because we will just break down and cry and think it’s other things […] we get very, like, broken-hearted about things. We dwell on it, we stew on it.</p>
</blockquote>
<p>The deficit-based language of genetics is peppered with words such as mutation, risk, impairment and abnormality. This can reinforce people’s lifelong experiences of bullying and stigma. As Aaron told us: </p>
<blockquote>
<p>In my mind, Mum has said to me, ‘You’re missing a bad chromosome’. […] I knew I wasn’t normal to others – I knew I was missing, some part of my brain has gone missing.</p>
</blockquote>
<p>All of this means the potential benefits of a genetic diagnosis were often wasted. </p>
<p>Virtually none of the participants in our research knew the name or nature of their genetic condition, let alone what health checks or therapies were recommended. </p>
<p>Worse, their ongoing health-care teams (including their GPs) were often equally in the dark. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/540675/original/file-20230802-21-osojpc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/540675/original/file-20230802-21-osojpc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/540675/original/file-20230802-21-osojpc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/540675/original/file-20230802-21-osojpc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/540675/original/file-20230802-21-osojpc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/540675/original/file-20230802-21-osojpc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/540675/original/file-20230802-21-osojpc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/540675/original/file-20230802-21-osojpc.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">Genetic counselling is often emotionally triggering.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/working-from-home-has-worked-for-people-with-disability-the-back-to-the-office-push-could-wind-back-gains-209870">Working from home has worked for people with disability. The back-to-the-office push could wind back gains</a>
</strong>
</em>
</p>
<hr>
<h2>Change is underway</h2>
<p>Both the federal government’s <a href="https://www.health.gov.au/our-work/national-roadmap-for-improving-the-health-of-people-with-intellectual-disability">National Roadmap to Improving the Healthcare of People with Intellectual Disability</a> and the <a href="https://disability.royalcommission.gov.au/">Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability</a> have <a href="https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Volume%206%2C%20Enabling%20autonomy%20and%20access.pdf">highlighted</a> how <a href="https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Volume%206%2C%20Enabling%20autonomy%20and%20access%20-%20Easy%20Read.pdf">widespread</a> exclusionary practices are in Australian health care. </p>
<p>Failing to address this means fewer people with intellectual disability getting health checks and screenings, leading to poorer long-term health. The average life expectancy of Australians with intellectual disability is already <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12684">shockingly low</a> compared to the general population.</p>
<p>But slowly, change is underway.</p>
<p>Based on our research, NSW Health funded our team to work with self-advocacy groups and health-care professionals to co-produce the <a href="https://www.genetics.edu.au/SitePages/Intellectual-disability-patient-communication.aspx?web=1%7D">GeneEQUAL Educational Toolkit</a>. This resource empowers medical professionals to deliver better, more equitable genetic healthcare and features <a href="https://geneequal.com/genetic-resources/our-easy-read-health-booklets/">Easy Read</a> booklets about genetic conditions and clinics.</p>
<figure>
<iframe src="https://player.vimeo.com/video/829753741" width="500" height="281" frameborder="0" webkitallowfullscreen="" mozallowfullscreen="" allowfullscreen=""></iframe>
</figure>
<p>People with intellectual disability identified three key guiding principles. Health-care professionals need to:</p>
<ul>
<li><p>make reasonable adjustments, such as allowing long enough appointments to explain options in an understandable way</p></li>
<li><p>practice person-centred care, such as making genetic reports and letters available in <a href="https://pwd.org.au/resources/easy-read-info/">Easy Read</a> (a style of presenting information simple and easy-to-understand ways) and ensuring the genetic diagnosis and management plan is shared with the patient themselves, their support person and their clinical team</p></li>
<li><p>offer choices and deliver trauma-informed care, given the <a href="https://disability.royalcommission.gov.au/">high rate of abuse</a> and stigma experienced by people with intellectual disability; language should be strengths-based and environments welcoming.</p></li>
</ul>
<p>This toolkit has been widely used in Australia and internationally since its launch, with many showing interest not just in the content but also in the collaborative way it was produced.</p>
<p><em>*Names changed to protect identities. If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.</em></p><img src="https://counter.theconversation.com/content/210889/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Elizabeth Emma Palmer has received funding from the NHMRC and NSW Health. She is a clinical geneticist at Sydney Children's Hospitals Network-Randwick and a member of the medical and scientific advisory committee for Rare Voices Australia, the national peak body for Australians living with a rare condition. </span></em></p><p class="fine-print"><em><span>Iva Strnadová has received funding from the NHMRC and the NSW Department of Health. She is also a Board member of Self Advocacy Sydney, an organisation run by and for people with intellectual disability.</span></em></p><p class="fine-print"><em><span>The institute that Jackie Leach Scully directs has received funding from the NHMRC and the NSW Department of Health.
</span></em></p><p class="fine-print"><em><span>Julie Loblinzk has received funding from the NHMRC and the NSW Department of Health. She is also a Board member of Self Advocacy Sydney, an organisation run by and for people with intellectual disability.</span></em></p>People with intellectual disability told us they often felt cut out of their own health appointments, as healthcare practitioners spoke to their support person or family instead of to them.Elizabeth Emma Palmer, Senior clinical lecturer in medical genetics, UNSW SydneyIva Strnadová, Professor, UNSW SydneyJackie Leach Scully, Professor of Bioethics, Director of the Disability Innovation Institute UNSW, UNSW SydneyJulie Loblinzk, Adjunct Lecturer at School of Education, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2152512023-10-11T19:05:36Z2023-10-11T19:05:36Z3 things the disability royal commission missed: health, transport, day programs<figure><img src="https://images.theconversation.com/files/553155/original/file-20231011-23-dqd9wd.jpg?ixlib=rb-1.1.0&rect=62%2C44%2C5927%2C3942&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/person-physical-disability-enters-public-transport-2107265798">Roman Zaiets/Shutterstock</a></span></figcaption></figure><p><em>The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has shared its final report. In this <a href="https://theconversation.com/au/topics/disability-rc-2023-146083">series</a>, we unpack what the commission’s 222 recommendations could mean for a more inclusive Australia.</em></p>
<hr>
<p>The disability royal commission’s <a href="https://disability.royalcommission.gov.au/publications/final-report">final report</a> included an expansive range of recommendations including the introduction of an Australian disability rights act, a minister for disability inclusion and a department of disability equality and inclusion. </p>
<p>The government says it will establish a taskforce and a staged response to dismantle barriers to inclusive education, open employment, and accessible, appropriate and safe housing. </p>
<p>But in three critical areas, the report barely scratches the surface of what is needed to make life more inclusive and equitable for Australians with disability. </p>
<h2>1. Preventive health</h2>
<p>The commission <a href="https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Executive%20Summary%2C%20Our%20vision%20for%20an%20inclusive%20Australia%20and%20Recommendations.pdf">said</a> a disability rights act would ensure equitable access to health services. But the report fails to provide a comprehensive analysis of the overall health and wellbeing of disabled Australians, or to set a reform agenda for health policy. </p>
<p>The commission received promising <a href="https://disability.royalcommission.gov.au/system/files/2022-03/Overview%20of%20responses%20to%20the%20Health%20care%20for%20people%20with%20cognitive%20disability%20Issues%20paper.pdf">proposals</a> early on to reform health care for people with disability. Options for strengthening preventive care, such as extending Medicare to cover dental and oral health for people with disability, and funding longer consultations for GPs and patients with disability are practical, systemic changes that could improve the health of Australians with disability. </p>
<p>Similarly, proposals to redesign physical environments so people with cognitive disabilities feel calm and safe did not feature (though there was <a href="https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Executive%20Summary%2C%20Our%20vision%20for%20an%20inclusive%20Australia%20and%20Recommendations.pdf">mention</a> of the value of co-design and collaborative care planning). </p>
<p>International examples of good practice also fell off the agenda. Last year the <a href="https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/global-report-on-health-equity-for-persons-with-disabilities">World Health Organization</a> identified 40 actions to improve health outcomes for people with disability. They span policy, funding, models of care, physical infrastructure and digital technologies to improve access, participation and outcomes. </p>
<p>The United Kingdom’s <a href="https://www.nhs.uk/conditions/learning-disabilities/annual-health-checks/#:%7E:text=Anyone%20aged%2014%20or%20over,for%20is%20on%20the%20register.">National Health Service</a> has acted to address the poorer physical and mental health of people with intellectual disabilities through annual health checks. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/heres-why-we-need-a-disability-rights-act-not-just-a-disability-discrimination-one-214715">Here's why we need a disability rights act – not just a disability discrimination one</a>
</strong>
</em>
</p>
<hr>
<h2>2. Urgent transport reforms</h2>
<p>Transport is crucial to inclusion. In countless hearings and witness statements the commissioners heard disturbing <a href="https://disability.royalcommission.gov.au/system/files/2022-10/Transcript%20Day%201%20-%20Public%20hearing%2028%2C%20Brisbane.pdf">accounts</a> of inaccessible transport, and harassment and abuse on buses, trains and aeroplanes. But the report offers little in the way of practical reforms or recommendations for improvement.</p>
<p>The commissioners acknowledge deficiencies in the <a href="https://www.infrastructure.gov.au/infrastructure-transport-vehicles/transport-accessibility/transport-disability-standards">Disability Standards for Accessible Public Transport</a>, which are linked to Australia’s anti-discrimination laws and human rights obligations. But their interest in reform stopped short of recommending ways to improve transport for people with disability through either legislation or policy. </p>
<p>Beefing up legislation, urging education for providers about the difficulties disabled passengers face and quantifying the wastage created by inaccessible transport would have been practical steps. </p>
<p>It’s important to note transport and health care are both areas where state and territory governments are not meeting their commitments to make reasonable adjustments for people with disability. Their failure to do so only adds to pressure on the National Disability Insurance Scheme (NDIS), which is forced to fund supports to cover the gaps. We can only hope the upcoming <a href="https://www.ndisreview.gov.au/">NDIS Review</a> makes recommendations for managing these boundaries better.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-disability-royal-commission-recommendations-could-fix-some-of-the-worst-living-conditions-but-thats-just-the-start-213466">The disability royal commission recommendations could fix some of the worst living conditions – but that's just the start</a>
</strong>
</em>
</p>
<hr>
<h2>3. Meaningful day services</h2>
<p>Another glaring omission in the final report is the absence of specific recommendations about the role of day programs, in which people with disability are grouped together – often behind closed doors. </p>
<p>The commission heard evidence of violence suffered by people with disability in these settings, including <a href="https://disability.royalcommission.gov.au/system/files/2023-02/Public%20hearing%2023%20-%20Counsel%20Assisting%20submissions%20-%20SUBM.0029.0001.0001.pdf">accounts</a> of NDIS participants being subjected to sexual abuse and assault.</p>
<p>Testimony made it clear many day programs are essentially segregated services that offer little by way of meaningful pursuits or skills development. One witness <a href="https://www.abc.net.au/news/2022-05-21/disbility-royal-commission-afford/101078214">said</a> the day program her son attended was nothing more than “glorified babysitting”.</p>
<p>The commissioners missed a golden opportunity to clarify what a meaningful, inclusive experience might mean in these settings. Recommendations for reform could help people with disability lead full and purposeful lives in the community, with a range of friendships, activities and relationships – a <a href="https://www.ohchr.org/en/instruments-mechanisms/instruments/declaration-rights-disabled-persons#:%7E:text=Disabled%20persons%20have%20the%20right,enable%20them%20to%20develop%20their">human right</a> they share with the rest of society. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-disability-royal-commission-heard-horrific-stories-of-harm-now-we-must-move-towards-repair-214479">The disability royal commission heard horrific stories of harm – now we must move towards repair</a>
</strong>
</em>
</p>
<hr>
<h2>What’s next?</h2>
<p>Decades in the making, the disability royal commission was a once-in-a-lifetime chance to investigate the realities of life for disabled Australians. It showed current policy settings are not up to the mark. Many of its recommendations stand to improve the lives of Australians with disability. </p>
<p>However, when it comes to reforming the health system disabled Australians depend on, making transport more accessible and creating meaningful social and recreational opportunities, the commissioners’ report seems to have handed government a free pass.</p><img src="https://counter.theconversation.com/content/215251/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Grattan Institute's Disability Program has support from the Summer Foundation.</span></em></p>The disability royal commission was a once-in-a-lifetime chance to investigate the realities of life for disabled Australians. But it missed three critical areas in need or urgent reform.Sam Bennett, Disability Program Director, Grattan InstituteHannah Orban, Associate Disability Program, Grattan InstituteLicensed as Creative Commons – attribution, no derivatives.tag: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>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1694116552474271841"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/new-national-autism-guideline-will-finally-give-families-a-roadmap-for-therapy-decisions-199786">New national autism guideline will finally give families a roadmap for therapy decisions</a>
</strong>
</em>
</p>
<hr>
<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>
<hr>
<p>
<em>
<strong>
Read more:
<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>
</strong>
</em>
</p>
<hr>
<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>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-early-intervention-for-infants-with-signs-of-autism-and-how-valuable-could-it-be-205839">What is 'early intervention' for infants with signs of autism? And how valuable could it be?</a>
</strong>
</em>
</p>
<hr>
<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>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/babies-crawl-scoot-and-shuffle-when-learning-to-move-heres-what-to-watch-for-if-youre-worried-204913">Babies crawl, scoot and shuffle when learning to move. Here's what to watch for if you're worried</a>
</strong>
</em>
</p>
<hr>
<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/1832232023-08-25T01:02:54Z2023-08-25T01:02:54ZMore than a ‘disability person’. What finishing school is like for youth with intellectual disability<p>Leaving school and figuring out what’s next is challenging for young people. For those with disability, it is even harder. It is often a time when supports are withdrawn as they leave the heavily structured school environment.</p>
<p>We asked young people with intellectual disability about their experiences of transitioning from school and starting adult life. <a href="https://www.tandfonline.com/doi/full/10.3109/13668250.2023.2245276">Our newly published research</a> suggests pre-transition planning for school leavers with disability is inconsistent or lacking. Most participants felt excluded from making decisions for life after school and needed support to access and navigate the National Disability Insurance Scheme (NDIS).</p>
<p>After school, most participants longed to find a paid job, friends, and a life partner but felt they were missing out on these typical adult milestones. They told us it was difficult to find service providers to help them reach their goals. Many felt isolated and in a perpetual state of transition.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/part-time-work-is-valuable-to-people-with-disability-but-full-time-is-more-likely-to-attract-government-support-202711">Part-time work is valuable to people with disability – but full time is more likely to attract government support</a>
</strong>
</em>
</p>
<hr>
<h2>The promise of ‘choice and control’</h2>
<p>Transition-from-school policies and guidelines exist in all states of Australia. </p>
<p>Shared <a href="https://education.nsw.gov.au/teaching-and-learning/disability-learning-and-support/leaving-school/transition-planning#More1">characteristics</a> between these guidelines include early planning, being person-centred, and ensuring collaboration between the family, school and services.</p>
<p>A <a href="https://theconversation.com/a-decade-on-the-ndis-has-had-triumphs-challenges-and-controversies-where-to-from-here-208463">decade ago</a>, Australia changed from a social welfare model of disability support to a consumer-focused, market-based system. The NDIS promised to be the cornerstone of this, offering participants increased “choice and control” over new skills, jobs, greater independence, quality of life and improved social participation. </p>
<p>We wanted to understand the lived experiences of today’s young Australians with intellectual disability in planning to leave school and transition into adult life. </p>
<p>Through individual and group interviews, 27 young people with intellectual disability (15 female and 12 male participants, aged 19 to 33) told us their views and experiences of leaving school in New South Wales, Queensland and Victoria. </p>
<p>Their stories highlight how much more work should be done to empower young people with intellectual disability.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1603115623063506945"}"></div></p>
<h2>What they told us</h2>
<p>Firstly, many young people told us they felt left out of transition planning at school, with most decisions being made for them. There were limited, if any, opportunities for them to explore post-school options. As one participant said, </p>
<blockquote>
<p>I don’t want people that are, like, like, you know, just making choices for me.</p>
</blockquote>
<p>Secondly, all participants found accessing NDIS funding complicated. They relied on parents or other advocates to navigate the process, to ask the right questions, and help with difficult jargon – or, as stated by one young person, knowing how to “bark the right way”. </p>
<p>After leaving school, many felt lonely, lost and uncertain about their adult role and identity. Some felt “left behind” by friends and siblings without disability who had jobs and life partners, intimate relationships and were raising families of their own. </p>
<blockquote>
<p>It’s hard to find a partner […] or to know someone and be with someone.</p>
</blockquote>
<p>There was a shared sense among participants that most disability services did not prioritise activities to support reaching their goals. A young woman explained how finding a service with a good fit had been very difficult. She talked about how her first service provider had “tried to like take us for money” without providing a service. </p>
<p>Other participants felt “stuck” with a life in disability services locked into the role of “disability person”, while wanting to do and be more.</p>
<blockquote>
<p>you know […] I want to do some more in life and […] I want to be out there. Know what I mean?</p>
</blockquote>
<p>Participants felt they needed better support with finding and keeping employment, even from agencies that had been contracted to do so. Getting help with finding a paid job seemed especially frustrating and out of reach. One young man called it a “total nightmare” explaining,</p>
<blockquote>
<p>So they’re basically, you know, not very well, um, structured […] you’re just waiting here for that lottery ticket to draw your name out. </p>
</blockquote>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/young-people-with-disability-have-poorer-mental-health-when-they-are-unemployed-funding-should-tackle-job-barriers-211065">Young people with disability have poorer mental health when they are unemployed – funding should tackle job barriers</a>
</strong>
</em>
</p>
<hr>
<h2>The same goals as young people without disability</h2>
<p>This study shows transition planning processes remain inconsistent and there is <a href="https://doi.org/10.1080/1034912X.2014.955788">insufficient collaboration</a> between school systems, adult disability services and the workforce.</p>
<p>Participants in our study had the same goals as young people without disability for meaningful work, independence and social connection – but need better support to contributing meaningfully to their communities. </p>
<p>The sense of “feeling stuck” with life in disability services or in “perpetual transition” may be caused by conflicting beliefs and values between service providers and consumers. </p>
<p>Young people expect to take on adult roles after leaving school. But disability service providers often see these young people merely as service receivers. Standardised processes and procedures may create “<a href="https://journals.sagepub.com/doi/abs/10.1177/1744629516674066">institutionalised identities</a>”. </p>
<p>The highly standardised nature of the NDIS leaves it inaccessible for people with intellectual disability, so the promise of choice and control in adult life is far from reality. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/australia-is-lagging-when-it-comes-to-employing-people-with-disability-quotas-for-disability-services-could-be-a-start-199405">Australia is lagging when it comes to employing people with disability – quotas for disability services could be a start</a>
</strong>
</em>
</p>
<hr>
<h2>How it should be</h2>
<p>Australia needs nationally consistent policies backed by systematic actions and oversight that truly supports the transition from school into meaningful adult lives for young people with intellectual disability. </p>
<p>People with disability must be actively involved in developing transition and service plans, with goals for growth and for moving between or beyond disability services once milestones are met. </p>
<p>Strategies must include steps for fostering social identities through friendships, casual to ongoing employment, intimate relationships, parenting or caring for others.</p>
<p>Further shifts in the NDIS model are also needed to foster individualised and supported planning for people with intellectual disability.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/on-my-worst-day-how-the-ndis-fosters-a-deficit-mindset-and-why-that-should-change-208846">'On my worst day ...' How the NDIS fosters a deficit mindset and why that should change</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/183223/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>This project was funded by the Endeavour Foundation Disability Research Grant.</span></em></p>We spoke to young people with intellectual disability. They had the same goals for life after high school as most people their age. But they felt ‘stuck’.Lise Ludwig Mogensen, Associate professor, Medical Education, Research and Evaluation, School of Medicine, Western Sydney UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2100362023-07-26T12:15:25Z2023-07-26T12:15:25ZFragile X syndrome often results from improperly processed genetic material – correctly cutting RNA offers a potential treatment<figure><img src="https://images.theconversation.com/files/538608/original/file-20230720-23-yssm44.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2308%2C1298&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">For many people with fragile X, the mutated gene that causes symptoms is active rather than silenced.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/fragile-x-chromosome-illustration-royalty-free-illustration/1407268269">Thom Leach/Science Photo Library</a></span></figcaption></figure><p><a href="https://www.cdc.gov/ncbddd/fxs/features/fragile-x-five-things.html">Fragile X syndrome</a> is a genetic disorder caused by a mutation in a gene that lies at the tip of the X chromosome. It is linked to autism spectrum disorders. People with fragile X experience a range of symptoms that include cognitive impairment, developmental and speech delays and hyperactivity. They may also have some physical features such as large ears and foreheads, flabby muscles and poor coordination.</p>
<p>Along with our colleagues <a href="https://scholar.google.com/citations?user=fbDXtcUAAAAJ&hl=en">Jonathan Watts</a> and <a href="https://www.rushu.rush.edu/faculty/elizabeth-m-berry-kravis-md-phd">Elizabeth Berry-Kravis</a>, <a href="https://profiles.umassmed.edu/display/133116">we are</a> <a href="https://scholar.google.com/citations?user=syYm8JMAAAAJ&hl=en">a team</a> of scientists with expertise in molecular biology, nucleic acid chemistry and pediatric neurology. We recently discovered that the mutated gene responsible for fragile X syndrome is active in most people with the disorder, not silenced as previously thought. But the affected gene on the X chromosome is still unable to produce the protein it codes for because the <a href="https://doi.org/10.1073/pnas.2302534120">genetic material isn’t properly processed</a>. Correcting this processing error suggests that a potential treatment for symptoms of fragile X may one day be available.</p>
<h2>Repairing faulty RNA splicing</h2>
<p>The <a href="https://doi.org/10.1038/s41583-021-00432-0">FMR1 gene encodes a protein</a> that regulates protein synthesis. A lack of this protein leads to overall excessive protein synthesis in the brain that results in many of the symptoms of fragile X. </p>
<p>The mutation that causes fragile X results in extra copies of a DNA sequence called a <a href="https://doi.org/10.1038/s41583-021-00432-0">CGG repeat</a>. Everyone has CGG repeats in their FMR1 gene, but typically fewer than 55 copies. Having 200 or more CGG repeats silences the FMR1 gene and results in fragile X syndrome. However, we found that <a href="https://doi.org/10.1073/pnas.2302534120">around 70% of people</a> with fragile X still have an active FMR1 gene their cellular machinery can read. But it is mutated enough that it is unable to direct the cell to produce the protein it encodes.</p>
<p>Genes are transcribed into another form of genetic material called RNA that cells use to make proteins. Normally, genes are processed before transcription in order to make a readable strand of RNA. This involves removing the <a href="https://www.genome.gov/genetics-glossary/Intron">noncoding sequences</a> that interrupt genes and splicing the genetic material back together. For people with fragile X, the cellular machinery that does this cutting incorrectly splices the genetic material, such that the protein the FMR1 gene codes for is not produced.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/ypsEJcyouy8?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Fragile X syndrome is the most common inherited form of intellectual disability.</span></figcaption>
</figure>
<p>Using cell cultures in the lab, we found that <a href="https://doi.org/10.1073/pnas.2302534120">correcting this missplice</a> can restore proper RNA function and produce the FMR1 gene’s protein. We did this by using short bits of DNA called <a href="https://doi.org/10.3390%2Fjcm9062004">antisense oligonucleotides, or ASOs</a>. When these bits of genetic material bind to RNA molecules, they change the way the cell can read it. That can have effects on which proteins the cell can successfully produce.</p>
<p>ASOs have been used with spectacular success to treat other childhood disorders, such as <a href="https://doi.org/10.1016/j.tins.2020.11.009">spinal muscular atrophy</a>, and are now being used to treat <a href="https://doi.org/10.1146/annurev-pharmtox-010919-023738">a variety of neurological diseases</a>.</p>
<h2>Beyond mice models</h2>
<p>Notably, fragile X syndrome is most often <a href="https://doi.org/10.1242/dmm.049485">studied using mouse models</a>. However, because these mice have been genetically engineered to lack a functional FMR1 gene, they are quite different from people with fragile X. In people, it is not a missing gene that causes fragile X but mutations that lead the existing gene to lose function. </p>
<p>Because the mouse model of fragile X lacks the FMR1 gene, the RNA is not made and so cannot be misspliced. Our discovery would not have been possible if we used mice.</p>
<p>With further research, future studies in people may one day include injecting ASOs into the cerebrospinal fluid of fragile X patients, where it will travel to the brain and hopefully restore proper function of the FMR1 gene and improve their cognitive function.</p><img src="https://counter.theconversation.com/content/210036/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Joel Richter receives funding from NIH and FRAXA. </span></em></p><p class="fine-print"><em><span>Sneha Shah receives funding from the FRAXA Research Foundation.</span></em></p>Fragile X syndrome is the most common inherited form of intellectual disability. Using short bits of DNA to fix improperly transcribed genes may one day be a potential treatment option.Joel Richter, Professor of Neuroscience, UMass Chan Medical SchoolSneha Shah, Assistant Professor of Molecular Medicine, UMass Chan Medical SchoolLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1868562022-08-16T14:45:25Z2022-08-16T14:45:25ZPeople with intellectual disability have a right to sexuality – but their families have concerns<figure><img src="https://images.theconversation.com/files/478750/original/file-20220811-6992-vr0mgb.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People with intellectual disability are entitled to their human rights like everyone else.</span> <span class="attribution"><span class="source">Shutterstock </span></span></figcaption></figure><p>Many South Africans living with intellectual disability don’t have opportunities to be part of community life. They may lack the opportunity to learn, work or enjoy leisure activities and social connections like anyone else.</p>
<p>There are various reasons for this. Inadequate health and social services, stigma and poor understanding of intellectual disability in society are some of them. One reason that researchers haven’t explored much relates to family members’ legitimate fears of the risk that their relatives will be sexually abused. </p>
<p>There are common <a href="https://doi.org/10.1007/s11195-014-9344-x">misconceptions about and negative attitudes</a> towards the sexuality of people with intellectual disability. They are also <a href="https://doi.org/10.2989/17280583.2012.735498">easy targets for sexual crime perpetrators</a> who take advantage of their diminished ability to understand or judge other people’s intentions. They are often eager to please others and face communication challenges which make it difficult to report if anything happened to them. </p>
<p>Data on sexual violence against people with intellectual disabilities in South Africa is scanty. But the available literature suggests that <a href="https://doi.org/10.2989/17280583.2012.735498">this group is at high risk</a>. </p>
<p>Intellectual disability <a href="https://www.ncbi.nlm.nih.gov/books/NBK332877/#:%7E:text=DSM%2D5%20defines%20intellectual%20disabilities,and%20practical%20areas%20of%20living.">affects</a> a person’s mental abilities including reasoning, problem solving, abstract thinking, judgement and academic learning. These challenges affect a person’s ability to be independent. The <a href="http://cs2016.statssa.gov.za/wp-content/uploads/2018/07/CS-2016-Disability-Report_-03-01-232016.pdf">2016 Community Survey</a> in South Africa placed intellectual disability in a category relating to difficulties with remembering or concentration. It reported an estimate of 3.3% of the population as having mild difficulty and 1% as having severe difficulty. </p>
<p>Despite their limitations, people with intellectual disability are entitled to their human <a href="https://www.justice.gov.za/legislation/constitution/SAConstitution-web-eng-02.pdf#page=2">rights</a> like everyone else. These include the right to sexual autonomy and sexuality education. But sexuality education and support are not usually available to this population group.</p>
<p>With this lack of support, many family caregivers – especially parents – live with a fear that their child or relative lacks competency. There’s concern that they may be at risk of sexual abuse, or might display inappropriate sexual behaviour. A common response is for caregivers to become overprotective. As a result, the person with intellectual disability is kept under surveillance. </p>
<p>In my <a href="https://open.uct.ac.za/handle/11427/24508">research</a> in the Western Cape province of South Africa I found that some people with intellectual disability were being “detained” at home. They were denied opportunities for education and training, employment, leisure, and other forms of social life. The main reasons related to sexuality.</p>
<h2>Study findings</h2>
<p>I interviewed 25 family caregivers about sexuality issues concerning their relative with intellectual disability. I also interviewed nine service providers about their views of families’ responses.</p>
<p>Family caregivers expressed a range of actions, attitudes and behaviours – from suppression of their relative’s sexuality to support. Responses shifted between the two extremes, depending on availability of professional support and the specific sexuality issue. </p>
<p>In the responses that tended towards suppression of sexuality, one of the main reasons was fear. </p>
<p>When a child reaches puberty and then adulthood, families face the reality of that person’s sexual maturation. Some families would prefer not to think about this at all. Physical body changes, menstruation, masturbation, interest in sexual intimacy, evidence of sexual activity, desire to become a parent and need for independence can be difficult for families to handle. The person with intellectual disability needs support, for example, in the form of sexuality education and empowerment. Family caregivers need emotional and practical support. These are not always available.</p>
<p>Even when the person with intellectual disability has access to some services such as sheltered workshops, it’s common for there to be a lack of collaboration between service providers and families. This leaves all the responsibility with the families. </p>
<p>Due to the lack of support and their fear, caregivers become <a href="https://doi.org/10.1111/j.1468-3156.2012.00758.x">reluctant “jailers”</a> of family members with intellectual disability. But lack of stimulation and exposure to the outside world for the person with intellectual disability has negative implications. It can make a person lonely, unable to learn how to do things, and prone to mental and physical health challenges. </p>
<p>There are some organisations working with people with intellectual disability in South Africa that take the right to sexual autonomy seriously. They offer appropriate support in promoting this right. These organisations have to <a href="https://journals.sagepub.com/doi/10.1177/17446295211048743#:%7E:text=https%3A//doi.org/10.1177/17446295211048743">manage family caregivers’ anxieties</a>. Families sometimes threaten to withdraw their relative from the services to thwart sexual behaviour.</p>
<h2>Implications</h2>
<p>Detaining and protectively watching over people with intellectual disability has implications for the whole family. </p>
<p>The role of “watcher” can affect caregivers’ own independence, flexibility, productivity and well-being. This reinforces the <a href="https://hdl.handle.net/10520/EJC189294">connection between poverty and disability</a>. </p>
<p>Service providers and policy makers should promote family centred support services for people with intellectual disability and caregivers. A big part of these efforts should be sexuality education to help people make autonomous, safe choices. </p>
<p>Security is a concern among families, especially those living in high-risk areas. The safety of people with intellectual disability must be prioritised. Where they have been victims of crime, justice must be done. </p>
<p>It takes collaboration to promote social inclusion. A comprehensive <a href="https://doi.org/10.1111/jppi.12318">approach</a> is useful. It should consider the need for support at the levels of the individual, family, work, school and community. And it goes further, to cultural institutions, social structures, policies and the broader cultural context.</p><img src="https://counter.theconversation.com/content/186856/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Callista Kahonde receives funding from the National Research Foundation Innovation Postdoctoral Fellowship. She is a postdoctoral fellow at Stellenbosch University, Centre for Disability and Rehabilitation Studies and a member of the Western Cape Forum for Intellectual Disability. The article is based on her PhD study at the University of Cape Town which was funded by the Vera Grover Scholarship and Sponsorship Trust.</span></em></p>The lack of sexuality education, and common myths and misconceptions about the sexuality of people with intellectual disability can lead to caregivers being reluctant ‘jailers’.Callista Kahonde, Postdoctoral fellow, Disability & Rehabilitation Studies, Stellenbosch UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1867422022-08-16T04:23:46Z2022-08-16T04:23:46ZPeople with intellectual disability can be parents and caregivers too – but the NDIS doesn’t support them<figure><img src="https://images.theconversation.com/files/478039/original/file-20220808-16-eeddut.jpg?ixlib=rb-1.1.0&rect=24%2C36%2C7996%2C5303&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://image.shutterstock.com/image-photo/mom-kissing-girl-down-syndrome-600w-2141406959.jpg">Shutterstock</a></span></figcaption></figure><p>The Australian Institute of Health and Welfare last month released its <a href="https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/data">report</a> on people with disability. It shows two in three people with disability aged 35 to 44 years have parenting responsibilities and over one in five people with intellectual disability aged 15 to 44 years have children. </p>
<p>While it is <a href="https://ses.library.usyd.edu.au/bitstream/handle/2123/13551/HealthyStart_PrevalenceStudy_Technical%20Report_1_Aug2014.pdf?sequence=1&isAllowed=y">estimated 0.41%</a> of Australian parents have intellectual disability, international evidence shows most people with intellectual disability who become parents are classified in the “low” to “borderline” intellectual functioning range. So they may not identify with a label of intellectual disability. The real percentage of parents in this category is likely to be higher. </p>
<p>Child protection statistics are a sober reminder of the vulnerability these families face if they fall between the cracks of the National Disability Insurance Scheme (NDIS) and mainstream support services. Up to three in every five children with a parent or parents with intellectual disability are likely to be removed from their care according to <a href="https://www.researchgate.net/publication/278110861_Parents_labelled_with_Intellectual_Disability_Position_of_the_IASSID_SIRG_on_Parents_and_Parenting_with_Intellectual_Disabilities">research</a> from around the world.</p>
<p>Parenting should be treated as an activity of daily living for people with disability and then supported – rather than ignored – to ensure the best outcomes for parents and children.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/mental-distress-is-much-worse-for-people-with-disabilities-and-many-health-professionals-dont-know-how-to-help-187078">Mental distress is much worse for people with disabilities, and many health professionals don't know how to help</a>
</strong>
</em>
</p>
<hr>
<h2>The situation for parents with disability</h2>
<p>With the <a href="https://aifs.gov.au/resources/short-articles/practices-support-parenting-parents-intellectual-disability">right help</a>, parents with intellectual disability can and do learn what it takes to be a good parent. But their efforts to keep their family together can be undermined by disjointed services and the separation of parenting responsibility from <a href="https://josi.org.au/articles/abstract/10.36251/josi.226/">disability needs</a>. </p>
<p>The NDIS is a key plank of Australia’s efforts to meet our obligations under the <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html">United Nations Convention on the Rights of Persons with Disabilities</a>. This includes the right to participate fully in society, live independently, and have a family. In reality, families living with disability face perilous service gaps that undermine these rights. </p>
<p>The NDIS does not fund <a href="https://www.ndis.gov.au/about-us/operational-guidelines/planning-operational-guideline/planning-operational-guideline-appendix-1-table-guidance-whether-support-most-appropriately-funded-ndis">general family support</a>. Despite inclusion as a <a href="https://www.dss.gov.au/the-national-framework-for-protecting-australias-children-2021-2031">priority group</a> in the latest National Framework for Protecting Australia’s Children, families with disability are only mentioned in passing in mainstream family support programs such as <a href="https://www.facs.nsw.gov.au/download?file=679896">in New South Wales</a>. </p>
<p>We have <a href="https://josi.org.au/articles/abstract/10.36251/josi.226/">noted</a> in our previous research that, if a mother with intellectual disability is assessed as requiring support with living skills, an NDIS funded support worker may teach her to buy and prepare her own meals and do the laundry. But the same worker is often not permitted to teach her how to sterilise her baby’s bottles or wash nappies. </p>
<p>If the first support a mother with intellectual disability receives follows a mandatory report to child protection, it is likely to be too little and too late. </p>
<p>As one parent we spoke to explained:</p>
<blockquote>
<p>I […] couldn’t keep up with the housework. So, community services removed them for that. And they took the youngest at three days old from the hospital, simply for the fact that the other kids were in care.</p>
</blockquote>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1549284669773922304"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/small-changes-could-bridge-communication-and-cultural-gaps-for-people-from-refugee-backgrounds-who-need-disability-support-185405">Small changes could bridge communication and cultural gaps for people from refugee backgrounds who need disability support</a>
</strong>
</em>
</p>
<hr>
<h2>Parenting is part of life</h2>
<p>Disability Minister Bill Shorten has <a href="https://www.youtube.com/watch?v=l4r-ekQjR-E">reiterated</a> that the NDIS was never intended to replace mainstream services. Proper investment to ensure Australians with disability can access mainstream supports in their community is critical, but parents with intellectual disability need more intensive support to manage the varied, complex and dynamic tasks that come with parenting. </p>
<p>If we recognise parenting as a fundamental occupation of daily living, NDIS funding can be used by parents with intellectual disability to learn parenting skills. </p>
<p>Where NDIS supports are in place prior to parenthood, we should adjust plans for expectant parents with intellectual disability. </p>
<p>The NDIS could fund assistance for personal and household activities to help parents learn what it takes to make a safe home for their child. Parents could also get NDIS help to access their community: to find out about local playgroups and new parents groups, and then help to join in so they can connect with other parents and services. </p>
<p>For parents we spoke to, even knowing what services they could use their NDIS funding for was a mystery. One found out too late NDIS funds could have helped her get to contact visits with her children in care. As she told us: </p>
<blockquote>
<p>We didn’t really know the ins and outs of what NDIS does for you, and no-one explained to me, ‘Oh, the NDIS package can help you with a lot of different things’, like helping with my parenting capacity, helping me with getting to and back from visits, or catching up with meetings that I need to go to. </p>
</blockquote>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-the-ndis-needs-to-do-to-rebuild-trust-in-the-words-of-the-people-who-use-it-185880">What the NDIS needs to do to rebuild trust, in the words of the people who use it</a>
</strong>
</em>
</p>
<hr>
<h2>Family-centred supports</h2>
<p>Our review of <a href="https://rccf-parenting-disability.sydney.edu.au/summaries-of-the-research/">support models</a> showed what works is ensuring families are connected to supports early and not when they are in crisis. And that services work together and are family – not person – centred. </p>
<p>In practical terms, the NDIS should have a special provision parents can use to supplement state-funded services. This is consistent with 2019 <a href="https://static1.squarespace.com/static/5898f042a5790ab2e0e2056c/t/5f1a5e5f446e9f2897911caf/1598501122938/NDIS+support+for+participants+who+are+parents+%28September+2019%29+Paper.pdf">recommendations</a> of the Independent Advisory Council to the NDIS. These suggested the NDIS negotiate with mainstream services on behalf of parents with intellectual disability and that child protection agencies lodge an urgent referral for an NDIS plan review if they come into contact with these families due to child safety concerns. In the three years since the report was released, there is no evidence the NDIS or state and territory child protection agencies have taken up these recommendations. </p>
<p><a href="https://theconversation.com/labor-vows-to-tackle-the-ndis-crisis-whats-needed-is-more-autonomy-for-people-with-disability-181470">Promises</a> to improve the way NDIA communicates with the disability community are welcome. Governments need a clearer picture of how many families are headed by parents with intellectual disability, and how they can tailor support early to prevent these families reaching crisis point.</p><img src="https://counter.theconversation.com/content/186742/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Susan Collings does 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><p class="fine-print"><em><span>Nothing to disclose.</span></em></p><p class="fine-print"><em><span>Margaret Spencer and Nikki Wedgwood 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>The NDIS offers support for activities of daily living, but doesn’t count parenting in this category.Susan Collings, Senior Research Fellow, Research Centre for Children and Families, University of SydneyGabrielle Hindmarsh, Research Fellow, Youth Mental Health and Technology Team (Mental Health, Culture, and Global Child Development Research Stream), University of SydneyMargaret Spencer, Lecturer & Director of Field Education in the Social Work Program, University of SydneyNikki Wedgwood, Senior Lecturer, Sydney School of Health Sciences, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1845552022-06-13T04:45:00Z2022-06-13T04:45:00Z‘What matters is hope, freedom and saying who you are.’ What LGBTQ+ people with intellectual disabilities want everyone to know<figure><img src="https://images.theconversation.com/files/467666/original/file-20220608-24-16s25j.png?ixlib=rb-1.1.0&rect=14%2C18%2C2389%2C1485&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Rainbow Rights</span>, <span class="license">Author provided</span></span></figcaption></figure><p>They are a group often overlooked, described as “invisible”, or perhaps assumed not to exist at all. </p>
<p>There is no reliable data that captures the number of LGBTQ+ Australians with intellectual disability. But in 2020, Australia’s <a href="https://rainbowhealthaustralia.org.au/media/pages/research-resources/private-lives-3-national-report/3352762661-1650953507/private-lives-3-national-report.pdf">largest national survey</a> on the health and well-being of LGBTQ+ people found more than one-third (38.5%) of the 6,835 respondents had a disability or long-term health condition.</p>
<p>People with intellectual disability face additional <a href="https://cid.org.au/issues/inclusion/">barriers</a> to access and participation in community, which means their voices are often missing from LGBTQ+ events, in government consultations, and in disability spaces. </p>
<p>We partnered with Inclusion Melbourne and Rainbow Rights & Advocacy, an advocacy group of LGBTQ+ people with intellectual disability to hear about what mattered to them, and what they wanted other people to know. </p>
<h2>‘Include us’</h2>
<p>We spoke with dozens of LGBTQ+ people with intellectual disability over hundreds of hours. </p>
<p>We did this work <a href="https://pwd.org.au/services/research/research-protocols/">alongside</a> peer researchers: LGBTQ+ people with intellectual disability who facilitated the online group and individual sessions and co-created the research resources.</p>
<p>We asked how LGBTQ+ people with intellectual disability can be better supported to – in the words of one person – “say who you are”, and gathered their comments together into key statements. </p>
<p>Then we asked each person if they agreed with each key statement. It is our belief our study (to be published later this year) is the first in the world to include only people with intellectual disability and to co-design all stages of research. </p>
<p>Where all too often people with intellectual disability are seen as the ones in need of education, our approach was the reverse. We asked for their advice to share with those who need to listen: policymakers, service providers, families and their supporters. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/film-review-thomas-banks-quest-for-love-tackles-life-as-a-gay-man-with-disability-150060">Film review: Thomas Banks’ Quest for Love tackles life as a gay man with disability</a>
</strong>
</em>
</p>
<hr>
<h2>‘What matters is hope, freedom and saying who you are’</h2>
<p>This <a href="https://www.sydneypride.com/">Pride month</a> is about celebrating diversity. But we have some way still to go. </p>
<p>The <a href="https://iht.deakin.edu.au/wp-content/uploads/sites/153/2021/03/More-than-ticking-a-box-uploadfile.pdf">stigma</a> around intellectual disability and LGBTQ+ identities means people may choose not to come out to the people or support services that surround them. </p>
<p>And when people do come out they are not always acknowledged or believed. As one study participant told us: </p>
<blockquote>
<p>They say [an intellectual disability means] you can’t know you’re a lesbian but I’m in my body and I know who I am and I know I like girls. </p>
</blockquote>
<p>Everyone we spoke to agreed it was essential to respect their gender and sexuality as LGBTQ+ people with intellectual disability.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/467661/original/file-20220608-14-ef0wgg.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Group of people march with rainbow flag" src="https://images.theconversation.com/files/467661/original/file-20220608-14-ef0wgg.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/467661/original/file-20220608-14-ef0wgg.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=404&fit=crop&dpr=1 600w, https://images.theconversation.com/files/467661/original/file-20220608-14-ef0wgg.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=404&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/467661/original/file-20220608-14-ef0wgg.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=404&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/467661/original/file-20220608-14-ef0wgg.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=508&fit=crop&dpr=1 754w, https://images.theconversation.com/files/467661/original/file-20220608-14-ef0wgg.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=508&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/467661/original/file-20220608-14-ef0wgg.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=508&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">‘We want respect,’ says peer researcher Cameron Bloomfield.</span>
<span class="attribution"><a class="source" href="http://rainbowrights.com.au/photo-gallery/">Rainbow Rights</a>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/in-our-own-voices-5-australian-books-about-living-with-disability-150543">In our own voices: 5 Australian books about living with disability</a>
</strong>
</em>
</p>
<hr>
<h2>‘We want respect’</h2>
<p>People talked about things that resonated with us as queer academics and reflected wider experiences of LGBTQ+ people. </p>
<p>This included negative mental health impacts following an increase in harassment and abuse during the <a href="https://theconversation.com/new-research-reveals-how-the-marriage-equality-debate-damaged-lgbt-australians-mental-health-110277">postal survey on marriage equality</a> and continuing <a href="https://www.instagram.com/p/CcUMiLwlpZb/?utm_source=ig_embed&ig_rid=6cb4c365-1349-4b91-af95-d423079f2590">anti-trans commentary</a> and coverage. </p>
<p>Abuse extended into people’s homes, where paid support workers had verbally abused them with homophobic slurs. One person in this situation told us: </p>
<blockquote>
<p>[…] there was a long time where I didn’t feel like I was safe [at home].</p>
</blockquote>
<h2>‘We want good people around us who understand us’</h2>
<p>After a long wait following the initial community consultations, the National Disability Insurance Authority (NDIA – the body that runs the NDIS) released its <a href="https://www.ndis.gov.au/media/2448/download?attachment">LGBTIQA+ Strategy</a> in 2020. The people we spoke to agreed there is a need to improve organisational culture and attitudes across the NDIA, partners and providers. </p>
<p>People told us support workers needed more training to understand their rights and LGBTQ+ identity, and provide support in line with the <a href="https://www.ndiscommission.gov.au/sites/default/files/documents/2021-11/ndis-practice-standards-and-quality-indicatorsfinal1.pdf">quality standards</a> required for NDIS service providers. These affirm that “the culture, diversity, values and beliefs of that participant are identified and sensitively responded to”.</p>
<hr>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/468159/original/file-20220610-18093-vyf4ie.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="tweet snapshot about being queer and having disability" src="https://images.theconversation.com/files/468159/original/file-20220610-18093-vyf4ie.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/468159/original/file-20220610-18093-vyf4ie.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=316&fit=crop&dpr=1 600w, https://images.theconversation.com/files/468159/original/file-20220610-18093-vyf4ie.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=316&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/468159/original/file-20220610-18093-vyf4ie.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=316&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/468159/original/file-20220610-18093-vyf4ie.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=397&fit=crop&dpr=1 754w, https://images.theconversation.com/files/468159/original/file-20220610-18093-vyf4ie.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=397&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/468159/original/file-20220610-18093-vyf4ie.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=397&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
<span class="attribution"><a class="source" href="https://twitter.com/paulkidd/status/1491316348957655040?s=20&t=bYoPjCFHDxGEi8u1_D3e-A">Twitter/@paulkidd</a></span>
</figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/creating-and-being-seen-new-projects-focus-on-the-rights-of-artists-with-disabilities-124270">Creating and being seen: new projects focus on the rights of artists with disabilities</a>
</strong>
</em>
</p>
<hr>
<h2>‘I want to be part of the queer mob – be who I am, on Country’</h2>
<p>Research has previously reported the only place Aboriginal and Torres Strait Islander people with disability do not experience inequality is within their <a href="https://fpdn.org.au/product/cultureisinclusion/">own communities</a>. </p>
<p>The Indigenous LGBTQ+ people with intellectual disability we spoke to told us how their spiritual connection and relationship to Country was an essential part of who they are. One participant, who identifies as a First Nations trans lesbian, shared her experience: </p>
<blockquote>
<p>They call me sister and everything else, they don’t care if you’re trans gay or lesbian, it doesn’t matter what. </p>
</blockquote>
<p>People talked about their need to access information, which helped shape our work in co-designing <a href="https://rainbowinclusion.org.au/">web-based resources</a> for LGBTQ+ people with disabilities about donating blood, interactions with the police, their rights and more. </p>
<p>Lastly, we asked people what they would like to see in the future. One response was particularly poignant: </p>
<blockquote>
<p>[…] being gay and free and no racism, be able to live peaceful.</p>
</blockquote>
<hr>
<p><em>The authors acknowledge our project partners <a href="https://rainbowrights.com.au/">Rainbow Rights & Advocacy</a> and <a href="https://inclusionmelbourne.org.au/">Inclusion Melbourne</a>, and the members of our Advisory Group. We particularly thank our colleague and chief investigator Cameron Bloomfield.</em></p><img src="https://counter.theconversation.com/content/184555/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Amie O'Shea receives funding from the National Disability Research Partnership and the Department of Social Services (Information, Linkages and Capacity Building program)</span></em></p><p class="fine-print"><em><span>Diana Piantedosi is an Associate Research Fellow at Deakin University. Diana receives a Research Training Scholarship as a PhD Candidate at La Trobe University and is affiliated with Women with Disabilities Victoria (WDV).</span></em></p>People with intellectual disabilities face additional barriers to access and participation in community, which means their voices are often missing from LGBTQ+ events.Amie O'Shea, Lecturer, Disability & Inclusion, Deakin UniversityDiana Piantedosi, Associate Research Fellow, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1805872022-05-24T20:04:59Z2022-05-24T20:04:59ZLow staff turnover, high loyalty and productivity gains: the business benefits of hiring people with intellectual disability<figure><img src="https://images.theconversation.com/files/456036/original/file-20220404-19-1ziypm.jpg?ixlib=rb-1.1.0&rect=0%2C14%2C9489%2C6302&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>There are many reasons to employ people living with intellectual disability. Most obvious is that it’s the right thing to do – it helps promote social justice, diversity, corporate social responsibility, and equal opportunity.</p>
<p>Even so, data released in 2020 (the latest available) show just <a href="https://www.abs.gov.au/articles/disability-and-labour-force">53.4%</a> of people with disability are in the labour force, compared with 84.1% of people without disability.</p>
<p>The situation is worse for people living with intellectual disability; only <a href="https://www.abs.gov.au/articles/disability-and-labour-force#data-download">32%</a> of this group are employed.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/464210/original/file-20220519-15-4x3c6h.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/464210/original/file-20220519-15-4x3c6h.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/464210/original/file-20220519-15-4x3c6h.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=358&fit=crop&dpr=1 600w, https://images.theconversation.com/files/464210/original/file-20220519-15-4x3c6h.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=358&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/464210/original/file-20220519-15-4x3c6h.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=358&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/464210/original/file-20220519-15-4x3c6h.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=449&fit=crop&dpr=1 754w, https://images.theconversation.com/files/464210/original/file-20220519-15-4x3c6h.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=449&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/464210/original/file-20220519-15-4x3c6h.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=449&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Persons aged years a labour force status by disability group.</span>
<span class="attribution"><a class="source" href="https://www.abs.gov.au/articles/disability-and-labour-force#data-download">Australian Bureau of Statistics</a></span>
</figcaption>
</figure>
<p>People living with intellectual disability are ready, willing and able to work.</p>
<p>What employers often don’t realise is that hiring from this oft-neglected segment of the workforce can also bring benefits for business.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/dont-shove-us-off-like-were-rubbish-what-people-with-intellectual-disability-told-us-about-their-local-community-179479">'Don't shove us off like we're rubbish': what people with intellectual disability told us about their local community</a>
</strong>
</em>
</p>
<hr>
<h2>Resilience, perseverance and positive outlook</h2>
<p>The recent Australian television documentary series, <a href="https://iview.abc.net.au/show/employable-me-australia">Employable Me</a>, highlighted the employment difficulties faced by people living with a disability.</p>
<p>It’s hard not to admire the incredible resilience, perseverance and positive outlook of this group.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1388337380508135425"}"></div></p>
<p>Despite these qualities, people living with intellectual disability who want to work <a href="https://link.springer.com/article/10.1007/s10926-015-9586-1">face barriers</a> such as:</p>
<ul>
<li>employer attitudes</li>
<li>stigma</li>
<li>preconceived beliefs</li>
<li>discriminatory work practices and </li>
<li>a limited knowledge of their capabilities.</li>
</ul>
<p>It’s true employers may need to make <a href="https://www.emerald.com/insight/content/doi/10.1108/PR-05-2016-0105/full/html">workplace adjustments</a> to accommodate these employees’ needs, such as:</p>
<ul>
<li>communicating in pictures rather than words (for example, using signage with symbols to indicate who and what goes where)</li>
<li>breaking tasks down into simple steps</li>
<li>specialised training for workers living with an intellectual disability, as well as supervisors and co-workers. </li>
</ul>
<p>Yes, these changes may represent an initial cost. But research shows the profound benefits of hiring people living with intellectual disabilities, which can include:</p>
<ul>
<li>improvements in <a href="https://content.iospress.com/articles/journal-of-vocational-rehabilitation/jvr521">profitability</a></li>
<li>greater <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/1744-7941.12230?casa_token=LX7vgoXjNO8AAAAA%3A-onOwl7cXpz8ML8wCF6-bFNav4599z0TUVZr-TigXNh4kGjjFrBlwY-AguP4dem2L4ghjAQD-newtjkt">cost-effectiveness</a></li>
<li>lower employee <a href="https://www.proquest.com/docview/236285953?pq-origsite=gscholar&fromopenview=true">turnover</a> </li>
<li>high <a href="https://eric.ed.gov/?id=EJ828953">rates</a> of employee retention, reliability, punctuality, loyalty, and</li>
<li><a href="https://content.iospress.com/articles/journal-of-vocational-rehabilitation/jvr8-1-09">benefits</a> to the company image.</li>
</ul>
<p>The organisations highlighted in such studies include retail organisations, the military, small and medium enterprises, professional services and landscaping.</p>
<p>To achieve such results though, requires employee support, changes to work procedures, flexibility in supervision, and – perhaps most importantly – an open mind.</p>
<h2>‘A massive waste of human resource’</h2>
<p>People living with intellectual disability can and do make a significant <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12558?casa_token=fmR6PyCVwK0AAAAA:LK63YKhGSp7cQKxRlal1jFgc9-jLuBa3O15Mdco3OnVSsoMDWRHN_ie6mr74FsFqnN2MBH_4u2CiCeQ">contributions at work</a> when given the opportunity.</p>
<p>Many tend to be employed part-time, and in segregated settings – often in <a href="https://buy.nsw.gov.au/buyer-guidance/source/select-suppliers/australian-disability-enterprises#:%7E:text=An%20Australian%20disability%20enterprise%20(ADE)%20is%20a%20not%2Dfor,to%20large%20product%20assembly%20lines">Australian disability enterprises</a> or what used to be called “sheltered workshops”.</p>
<p>One of us (Elaine Nash) has been researching the business benefits of employing people living with intellectual disability. The (yet to be published) research has involved interviews with policy makers, leaders, disability advocates, managers, employers, and staff.</p>
<p>One interview was with Professor Richard Bruggemann, a disability advocate and last year’s <a href="https://www.australianoftheyear.com.au/recipients/richard-bruggemann/2273/">South Australia Senior Australian of the year</a>. He described the low labour force participation rate of people living with an intellectual disability as “a massive waste of human resource”. He said:</p>
<blockquote>
<p>People living with intellectual disability are ready, willing, and able to make a difference to organisations beyond the traditional sheltered workshop setting. All they need is an opportunity to do so.</p>
</blockquote>
<p>Bruggemann’s observations are supported by international <a href="https://www.tandfonline.com/doi/full/10.1080/09638288.2019.1570356">research</a> <a href="https://link.springer.com/article/10.1007/s10926-018-9756-z">about</a> workers living with intellectual disability. Many <a href="https://www.tandfonline.com/doi/full/10.1080/09638288.2019.1570356">studies</a> have called for a whole-of-government approach to boost employment rates in this cohort. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/464191/original/file-20220519-17-cib5rs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/464191/original/file-20220519-17-cib5rs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/464191/original/file-20220519-17-cib5rs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/464191/original/file-20220519-17-cib5rs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/464191/original/file-20220519-17-cib5rs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/464191/original/file-20220519-17-cib5rs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/464191/original/file-20220519-17-cib5rs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/464191/original/file-20220519-17-cib5rs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Many studies have called for a whole-of-government approach to boost employment.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>Making it happen</h2>
<p>Employing people living with intellectual disability won’t always be suitable. </p>
<p>It is not a silver bullet for corporate success, higher efficiency, or greater profits. But in some settings, it may help <a href="https://www.tandfonline.com/doi/full/10.3109/13668250.2017.1379250?casa_token=8wLN2zFs25sAAAAA%253AmB2jcCrnwhndFhnRyFmco8dc0PMAUhDUOIdzJyn0ZFkXoKwnmzZs-v7hZIsl7mOXS54-maTObIKI">address problems</a> that have been concerning employers. </p>
<p>As Simon Rowberry, CEO of <a href="https://www.barkuma.com.au/">Barkuma</a> (a not-for-profit that supports people with disability) told us in an interview:</p>
<blockquote>
<p>There are costs and benefits in any employment decision. Incorporating workers living with intellectual disability into your workforce is no different. Preparation, understanding what the upsides as well as the downsides are, and a need to be flexible are non-negotiables.</p>
</blockquote>
<p>Perhaps the most critical success factor is a genuine desire to make it happen. Where there’s a will, there’s usually a way.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/employable-me-has-struck-a-chord-but-will-it-change-employers-attitudes-to-disability-94903">Employable Me has struck a chord but will it change employers' attitudes to disability?</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/180587/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Elaine Nash used to work with Professor Richard Bruggemann when he was CEO of Intellectual Disability Services Council (IDSC). This story is part of The Conversation's Breaking the Cycle series, which is about escaping cycles of disadvantage. It is supported by a philanthropic grant from the Paul Ramsay Foundation.
</span></em></p><p class="fine-print"><em><span>Basil Tucker received funding from Accounting and Finance Association Australian and New Zealand (AFAANZ) for this project.</span></em></p>Research shows there can be profound business benefits to hiring people living with intellectual disability.Elaine Nash, PhD Candidate, University of South AustraliaBasil Tucker, Senior Lecturer in Management Accounting, University of South AustraliaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1805902022-05-03T01:30:13Z2022-05-03T01:30:13ZHospitals only note a person’s intellectual disability 20% of the time – so they don’t adjust their care<figure><img src="https://images.theconversation.com/files/459658/original/file-20220426-20-6dnpjq.jpg?ixlib=rb-1.1.0&rect=10%2C20%2C6659%2C4396&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://image.shutterstock.com/image-photo/doctors-gloved-hands-hold-clipboard-600w-1786704521.jpg">Shutterstock</a></span></figcaption></figure><p>People with intellectual disability only have their disability noted by hospital staff in one in every five hospital admissions, <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0266051">our new study shows</a>.</p>
<p>Recognising someone has a disability is critical to their care. This finding helps explain why many people with intellectual disability do not get hospital care that best meets their needs. </p>
<p>Urgent action is needed to make our hospital system safe, effective and tailored to the needs of around <a href="https://www.aihw.gov.au/reports/disability/intellectual-disability-australia/summary">450,000 Australians</a> living with intellectual disability.</p>
<h2>A system of neglect</h2>
<p>Our <a href="https://bmjopen.bmj.com/content/9/9/e031624">research</a> looked at historical information from hospitals and disability services in New South Wales between 2005 to 2015 (the most recent accessible data). </p>
<p>We found 12,593 adults with intellectual disability who used disability services in this time. In total, these adults went to hospital 80,960 times from 2005 to 2015. But in only 19,261 of these visits did the hospital recognise the person had an intellectual disability. </p>
<p>Intellectual disability is broadly <a href="https://www.inclusionaustralia.org.au/intellectual-disability/what-is-intellectual-disability/">defined</a> as a lifelong condition that affects intellectual skills, behaviour and the ability to perform everyday tasks.</p>
<p>Intellectual disability exists across a spectrum. People with mild intellectual disability might engage in activities like full time work and sport. People with profound intellectual disability may not be able to communicate and require full time care.</p>
<p>Little has changed in the health care system to fix this issue since the data in our research was collected. </p>
<p>In 2008, Australia ratified the United Nations <a href="https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities">Convention on the Rights of Persons with Disabilities</a>, which protects the right to the highest attainable standard of health without discrimination on the basis of disability. But the reality for Australians living with intellectual disability is starkly different. </p>
<p>Right now, the <a href="https://disability.royalcommission.gov.au/">Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability</a> is looking into problems faced by people with disabilities. </p>
<p>Based mainly on evidence from people with intellectual disability on the autism spectrum, the commission found people with cognitive disabilities <a href="https://disability.royalcommission.gov.au/system/files/2020-10/Interim%20Report.pdf">face neglect</a> in the health system. They found people with disabilities experience higher costs, longer waiting lists, physically inaccessible services and complex medical forms.</p>
<p>A person with intellectual disability may experience delayed diagnosis and inefficiency because of communication difficulties. Health professionals may lack the skills to assess and manage medical conditions when intellectual disability is also present. </p>
<h2>Poorer care ends lives sooner</h2>
<p>Our previous research has shown gaps in <a href="https://onlinelibrary.wiley.com/doi/10.5694/mja2.51088">preventative health care</a>, <a href="https://www.tandfonline.com/doi/full/10.1080/19315864.2017.1408724">mental health care</a> and in <a href="https://bmjopen.bmj.com/content/7/2/e013489">life expectancy</a>. People with intellectual disability die on average 26 years younger than the general population. </p>
<p>Most of this difference in life expectancy is not specifically related to the intellectual disability itself or its causes. Rather, it relates to lifelong health disadvantage, lack of access and failure to manage emerging health conditions.</p>
<p>Potentially avoidable deaths (from conditions that could have been prevented through individualised care or treatment, like viral pneumonia, asthma, or diabetes) are <a href="https://bmjopen.bmj.com/content/7/2/e013489">more than twice as likely</a> in people with intellectual disability. </p>
<p>Though Australia has one of the <a href="https://worldpopulationreview.com/country-rankings/best-healthcare-in-the-world">best health care systems in the world</a>, people with intellectual disability experience neglect within it. </p>
<p>Ahead of the upcoming national election, <a href="https://cid.org.au/our-campaigns/end-deadly-disability-discrimination/">people with intellectual disability</a> are calling out this “deadly discrimination”. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/459656/original/file-20220426-18-1yteib.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="woman in hospital bed" src="https://images.theconversation.com/files/459656/original/file-20220426-18-1yteib.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/459656/original/file-20220426-18-1yteib.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/459656/original/file-20220426-18-1yteib.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/459656/original/file-20220426-18-1yteib.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/459656/original/file-20220426-18-1yteib.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/459656/original/file-20220426-18-1yteib.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/459656/original/file-20220426-18-1yteib.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">If intellectual disability isn’t noted for patients, they may experience poorer treatment.</span>
<span class="attribution"><a class="source" href="https://images.unsplash.com/photo-1633219664572-473fd988a44f?ixlib=rb-1.2.1&ixid=MnwxMjA3fDB8MHxwaG90by1wYWdlfHx8fGVufDB8fHx8&auto=format&fit=crop&w=2072&q=80">Unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/dont-shove-us-off-like-were-rubbish-what-people-with-intellectual-disability-told-us-about-their-local-community-179479">'Don't shove us off like we're rubbish': what people with intellectual disability told us about their local community</a>
</strong>
</em>
</p>
<hr>
<h2>How do we improve recognition?</h2>
<p>To improve the recognition of intellectual disability when someone goes to hospital, we would like to see a national health disability indicator in the form of a code. When noted on their health records, this indicator would tell the health care system a patient has an intellectual disability (with the permission of that person), and they might need reasonable adjustments to be made. </p>
<p>This indicator would help make intellectual disability visible in hospitals, and ensure people get the best possible care. </p>
<p>An indicator of this kind is <a href="https://digital.nhs.uk/services/reasonable-adjustment-flag">already used in the UK</a>. People with disabilities help set up their own indicators to make sure their needs are met. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1499650905188274176"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/mums-with-an-intellectual-disability-already-risk-family-violence-and-losing-their-kids-coronavirus-could-make-things-worse-131468">Mums with an intellectual disability already risk family violence and losing their kids. Coronavirus could make things worse</a>
</strong>
</em>
</p>
<hr>
<h2>Reasonable adjustments</h2>
<p>Reasonable adjustments are things that need to be done to make health care accessible to a person with disability. </p>
<p>For people with intellectual disability, reasonable adjustments can include adjusting communication, providing extra time and support, and involving the person in choices and decisions. Research shows reasonable adjustments <a href="https://journals.rcni.com/nursing-standard/evidence-and-practice/implementing-reasonable-adjustments-for-disabled-people-in-healthcare-services-ns.2019.e11172/full">improve care</a>. </p>
<p>In the UK, all hospitals must make reasonable adjustments and the person with disability must be asked about <a href="https://www.england.nhs.uk/learning-disabilities/improving-health/reasonable-adjustments/">what adjustments they need</a>. Hospitals that do not make reasonable adjustments risk losing accreditation and funding. </p>
<p>In New South Wales, hospitals are meant to make <a href="https://www.health.nsw.gov.au/disability/Pages/disability-action-planning.aspx">reasonable adjustments for people with disability</a>. However, our study suggests most of the time, when a person with intellectual disability goes to hospital, this does not happen because the hospital remains unaware of their needs.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/i-know-that-you-know-5-ways-to-help-people-with-aphasia-to-communicate-180669">'I know that you know' – 5 ways to help people with aphasia to communicate</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/180590/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Adrian Raymond Walker currently works in the Department of Developmental Disability Neuropsychiatry at The University of New South Wales, Sydney. The department receives core funding from the NSW Government Department of Health, and receives grants from multiple sources including the National Health and Medical Research Council. </span></em></p><p class="fine-print"><em><span>Julian Trollor receives core funding for his university department from the NSW Government Department of Health. He is also the recipient of multiple grants from national competitive grant bodies including but not limited to the National Health and Medical Research Council. He sits on multiple Commonwealth and State government committees related to the health and wellbeing of people with disabilities.</span></em></p>If hospitals know a person has an intellectual disability, they can tailor communication and care to improve their treatment and health outcomes.Adrian Raymond Walker, Research Officer - Psychiatry and Mental Health, UNSW SydneyJulian N. Trollor, Professor, Medicine and Health, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1794792022-04-05T03:17:30Z2022-04-05T03:17:30Z‘Don’t shove us off like we’re rubbish’: what people with intellectual disability told us about their local community<figure><img src="https://images.theconversation.com/files/455684/original/file-20220331-18-t7vi72.jpg?ixlib=rb-1.1.0&rect=0%2C8%2C5894%2C3300&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>As the federal election approaches, civic engagement is back on people’s minds. But not everyone’s needs are well served in the political sphere – and one of the areas most ripe for improvement is actually at the local government level.</p>
<p>To find out more about their experiences of civic and social participation, we spent 12 months speaking with people intellectual disabilities about how they experience their local communities and the services local government provides.</p>
<p>Our <a href="https://socialimpact.uts.edu.au/case-study/my-home-my-community-giving-people-with-an-intellectual-disability-a-voice/">study</a> found there is huge opportunity to incorporate the ideas and opinions of people with intellectual disabilities about their local communities. This would help support greater civic inclusion for all.</p>
<p>Among other things, participants called for for access to better transport options, better maintained public toilets and more pedestrian crossings. </p>
<p>Many told us our focus group was the first time in their lives anyone had asked their opinion about these aspects of their local community.</p>
<h2>What we did</h2>
<p>Our <a href="https://www.uts.edu.au/node/284291/what-we-do-old/research/my-home-my-community">project team</a> included core members and researchers with intellectual disabilities. We conducted focus groups in six local government areas (a total of 45 people) in a mix of metropolitan and regional areas across New South Wales and Victoria. </p>
<p>To capture the types of improvements to local services and places that people with intellectual disability want to see, we asked participants: what would you change if you were the boss of your local government?</p>
<p>Our findings, published in the journal <a href="https://www.mdpi.com/2071-1050/13/16/9075">Sustainability</a>, reveal people with intellectual disabilities are more than capable and willing to contribute to shaping local communities for the better – but are rarely asked about their opinions or experiences. </p>
<p>Our research suggests participation could be improved via several key changes.</p>
<p><strong>1. Ensure accessible information and communication</strong></p>
<p>One person with intellectual disability told us:</p>
<blockquote>
<p>if you want us to participate, we need to know what things are happening and when […] and not just the disability events.</p>
</blockquote>
<p>This was a common refrain. Many people with intellectual disability want their local government to provide more accessible information, in a range of formats, about what’s happening in the community and most importantly, how to participate. </p>
<p>One person told us:</p>
<blockquote>
<p>If I was the boss of my council […] I would text people to let them know that they can call council.</p>
</blockquote>
<p><strong>2. Create inclusive employment opportunities</strong></p>
<p>One of the most powerful messages in every focus group we conducted is a call for more employment opportunities. Participants spoke at length about hopes for a job, perhaps even one in local government. One person told us:</p>
<blockquote>
<p>We could work at the front desk and be welcoming.</p>
</blockquote>
<p>Another said:</p>
<blockquote>
<p>I wish I could work but there are not many opportunities.</p>
</blockquote>
<p>As one participant put it: </p>
<blockquote>
<p>If I was the boss of my local council I would employ people with disability.</p>
</blockquote>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/455694/original/file-20220331-27-43edd8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man with intellectual disability waters a garden." src="https://images.theconversation.com/files/455694/original/file-20220331-27-43edd8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/455694/original/file-20220331-27-43edd8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/455694/original/file-20220331-27-43edd8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/455694/original/file-20220331-27-43edd8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/455694/original/file-20220331-27-43edd8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/455694/original/file-20220331-27-43edd8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/455694/original/file-20220331-27-43edd8.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">Participants spoke at length about hopes for a job, perhaps even one in local government.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p><strong>3, Ensure people feel safe and respected</strong></p>
<p>Unfortunately, we heard many stories of people not feeling safe in their local community. </p>
<p>Participants also told us of many regular exchanges in public where they did not feel welcome or respected. Quotes from the focus groups included: </p>
<blockquote>
<p>I wish people were more friendly to people with intellectual disability.</p>
<p>If I was the boss at [my council] I would make sure I listened to people. People don’t listen to me when I have a problem.</p>
<p>Sometimes, when I go to the shops, people just look at me […] I think the council could train people to help people with disability […] and be like ‘OK, are you sure you’re alright with this? We can help you out, if you need more help, just call us back.’ […] Not just shove us off like we are rubbish.</p>
</blockquote>
<p><strong>4. Create well-designed built environments</strong></p>
<p>The design and maintenance of accessible public spaces, parks and recreational areas were a regular topic in our discussions. </p>
<p>Participants talked about how we could be improving the experiences of everyone in the community, telling us:</p>
<blockquote>
<p>We need more accessible drop-offs right at the library [and pool] […] we have to walk too far and get tired as a group. It caused a problem before because we were always late to the class.</p>
<p>The council should fix our [pedestrian] crossing, they go too fast, someone nearly got hit last week.</p>
</blockquote>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/455693/original/file-20220331-18-4aov4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman and man with intellectual disability ride bikes along a path." src="https://images.theconversation.com/files/455693/original/file-20220331-18-4aov4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/455693/original/file-20220331-18-4aov4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/455693/original/file-20220331-18-4aov4k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/455693/original/file-20220331-18-4aov4k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/455693/original/file-20220331-18-4aov4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/455693/original/file-20220331-18-4aov4k.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/455693/original/file-20220331-18-4aov4k.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=504&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The design and maintenance of accessible public spaces, parks and recreational areas were a regular topic in our discussions.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<h2>How councils can improve</h2>
<p>Local governments and state government departments outline their inclusion plans and outcomes in a <a href="https://www.facs.nsw.gov.au/inclusion/advisory-councils/disability/inclusion-plans#:%7E:text=Disability%20Inclusion%20Planning%20is%20about,rights%20of%20people%20with%20disability">Disability Inclusion Action Plan</a>. These plans – based around identified need through local consultations including people with disability, their carers and family – are designed to translate into direct actions by councils to provide more inclusive communities for all. </p>
<p>When we spoke to local government representatives about the findings of our research we found great variation in whether local governments have staff or resources to support inclusion of people with disability. But there is a genuine willingness and desire on their part to do things differently. </p>
<p>Conceptualising what inclusion is, and what it isn’t, is a good start. According to Jack Kelly, a member of our <a href="https://www.uts.edu.au/node/284291/what-we-do-old/research/my-home-my-community">research team</a>, and a person with a disability:</p>
<blockquote>
<p>Holding an event once a year for International Day of People with A Disability doesn’t make your council inclusive.</p>
</blockquote>
<p>One way to improve the confidence of local governments to engage more often and regularly with diverse local communities, including people with intellectual disabilities, is to provide some practical guidance on inclusive practice. There are <a href="https://cid.org.au/resource/inclusive-communication-tips/">myriad</a> <a href="https://cid.org.au/inclusion-services/">resources</a> online to <a href="https://media.accessiblecms.com.au/uploads/the-inclusion-library/2021/04/LGNSW-A3_Poster_Practical-Ways-to-Include-PWID.pdf">guide</a> such a process.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/455696/original/file-20220401-15-i8cvd5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A group of people with intellectual disability participate in an outdoor activity." src="https://images.theconversation.com/files/455696/original/file-20220401-15-i8cvd5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/455696/original/file-20220401-15-i8cvd5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/455696/original/file-20220401-15-i8cvd5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/455696/original/file-20220401-15-i8cvd5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/455696/original/file-20220401-15-i8cvd5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/455696/original/file-20220401-15-i8cvd5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/455696/original/file-20220401-15-i8cvd5.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">Many people with intellectual disability want their local government to provide more accessible information, in a range of formats, about what’s happening in the community and most importantly, how to participate.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>Looking beyond local government, every civic engagement opportunity, including <a href="https://cid.org.au/our-campaigns/peat-island/">urban planning processes</a> and <a href="https://cid.org.au/resource/how-to-vote-in-the-local-government-elections-in-nsw/">voting</a>, is worthy of a review. We must explore ways to make information, communication and processes more inclusive.</p>
<p>Providing information in a range of formats and clearly explaining processes improves opportunities for civic inclusion for everyone, including people with low literacy, culturally and linguistically diverse communities, people with intellectual disabilities and all other communities in between.</p>
<p>But organisations should not rely solely on external resources. </p>
<p>As highlighted by people with intellectual disabilities themselves, inclusive employment represents one of the most important steps forward towards greater social and civic inclusion. </p>
<p>This would not only demonstrate that the contributions of people with disability are valued in their community, but would mean that knowledge and social capital about inclusion can be built from within. </p>
<p>As Justine O'Neill, CEO of Council for Intellectual Disability told us:</p>
<blockquote>
<p>Employing people with intellectual disability in roles that support the purpose of the organisation changes attitudes, builds organisational capacity and confidence to be an inclusive employer and results in better informed work.</p>
</blockquote><img src="https://counter.theconversation.com/content/179479/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Phillippa Carnemolla received funding to undertake this research project from the National Disability Insurance Scheme Australia (NDIA) as part of their Information Linkages and Capacity Building Grant Program. Phillippa is also a member of the City of Sydney Inclusion (Disability) Advisory Panel and a Director of the Centre for Universal Design Australia. This story is part of The Conversation's Breaking the Cycle series, which is about escaping cycles of disadvantage. It is supported by a philanthropic grant from the Paul Ramsay Foundation.</span></em></p>People with intellectual disability told us they want better transport, employment and better maintained public toilets and pedestrian crossings. But many said their opinions were rarely sought.Phillippa Carnemolla, Associate Professor, University of Technology SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1675912021-09-08T20:03:56Z2021-09-08T20:03:56ZOn 50th anniversary of Attica uprising, 4 essential reads on prisoners’ rights today<figure><img src="https://images.theconversation.com/files/420095/original/file-20210908-26-nvlelu.jpg?ixlib=rb-1.1.0&rect=26%2C58%2C2965%2C1992&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Some of the demands by prisoners in 1971's Attica rebellion still resonate today.</span> </figcaption></figure><p>On Sept. 9, 1971, nearly 1,300 incarcerated men at Attica Correctional Facility in New York state <a href="https://www.wbfo.org/heritage-moments/2018-09-10/heritage-moments-the-attica-prison-uprising-43-dead-and-a-four-decade-cover-up">took control of the facility</a>, prompting a <a href="https://www.nytimes.com/1996/09/10/nyregion/the-lessons-of-attica-25-years-later.html">multiday standoff</a> with authorities that ended in a massacre.</p>
<p>The incident resulted in the deaths of 43 people, many of them inmates, and marked an important moment in the <a href="https://www.aclu.org/blog/prisoners-rights/attica-every-prison-and-every-prison-attica">prisoners’ rights movement</a> in the United States. The men behind what has variously been described as a “riot,” “rebellion” and “uprising” at Attica <a href="https://doi.org/10.1177/0306396811414338">were demanding improvements</a> to medical and food supplies behind bars, greater visitation rights and an end to insanitary conditions and guard brutality.</p>
<p>The uprising took place before the <a href="https://www.upi.com/Archives/1991/05/16/US-prison-population-exploded-in-1980s/4744674366400/#:%7E:text=But%20during%20the%201980s%2C%20the,at%20the%20end%20of%201990.">huge increase in America’s prison population</a> in the 1980s and 1990s. But as The Conversation’s authors have explained in recent months, many of the grievances raised by the Attica prisoners – health care, visitation rights, brutality and neglect – remain a concern for today’s incarcerated men and women. Here are four essential reads:</p>
<h2>Behind bars and suffering from dementia</h2>
<p>America’s prisons are facing a growing aging population. Research shows that by 2030, almost <a href="https://pdfs.semanticscholar.org/30aa/ac3ae03558fe6b9d92598de4cafe85fafdf9.pdf">one-third of all incarcerated people</a> will be over the age of 55. Rachel Lopez, <a href="https://drexel.edu/law/faculty/fulltime_fac/Rachel%20Lopez/#:%7E:text=Rachel%20L%C3%B3pez%20is%20an%20Associate,at%20the%20Harvard%20Kennedy%20School.">a law professor at Drexel University</a> and former commissioner on Pennsylvania’s Sentencing Commission, explains how the aging population will <a href="https://theconversation.com/prisoners-in-us-suffering-dementia-may-hit-200000-within-the-next-decade-many-wont-even-know-why-they-are-behind-bars-138236">place an additional burden on authorities</a>: Research has shown that by the end of this decade, up to <a href="https://www.ncchc.org/filebin/images/Website_PDFs/24-2.pdf">210,000 elderly prisoners</a> will have dementia. The cost of their medical upkeep will fall on taxpayers.</p>
<figure class="align-center ">
<img alt="A prisoner sips water as he stands in a room at the hospice wing of California Medical Facility." src="https://images.theconversation.com/files/420097/original/file-20210908-27-c7wk4g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/420097/original/file-20210908-27-c7wk4g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/420097/original/file-20210908-27-c7wk4g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/420097/original/file-20210908-27-c7wk4g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/420097/original/file-20210908-27-c7wk4g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/420097/original/file-20210908-27-c7wk4g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/420097/original/file-20210908-27-c7wk4g.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">A prisoner on the hospice wing of California Medical Facility.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/john-gillis-age-73-a-hospice-care-patient-diagnosed-with-news-photo/457461857?adppopup=true">Andrew Burton/Getty Images</a></span>
</figcaption>
</figure>
<p>Moreover, keeping someone with dementia behind bars is, Lopez argues, an affront to human dignity and may even violate the United States Constitution’s prohibition on cruel and unusual punishment.</p>
<p>“Forcing those who cannot understand their punishment to live the remainder of their days behind bars appears to be exactly the type of excessive and cruel punishment that the Eighth Amendment was meant to protect against,” Lopez writes.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/prisoners-in-us-suffering-dementia-may-hit-200-000-within-the-next-decade-many-wont-even-know-why-they-are-behind-bars-138236">Prisoners in US suffering dementia may hit 200,000 within the next decade – many won't even know why they are behind bars</a>
</strong>
</em>
</p>
<hr>
<h2>Prisoners with intellectual disabilities</h2>
<p>The elderly are not the only vulnerable population being kept behind bars. In March 2021, the Bureau of Justice Statistics <a href="https://bjs.ojp.gov/content/pub/pdf/drpspi16st.pdf">revealed that around a quarter</a> of the 24,848 incarcerated people it surveyed across 364 prisons had an intellectual, developmental or cognitive disability. Across the entire prison and jail network, that would equate to some 550,000 people. Jennifer Sarrett <a href="http://catalog.college.emory.edu/department-program/faculty.php?YToxOntzOjI6ImlkIjtzOjM6Ijc5MyI7fQ==">of Emory University</a> conducted in-depth interviews with several adults within the criminal justice system who have intellectual and developmental disabilities.</p>
<p><iframe id="aZQHB" class="tc-infographic-datawrapper" src="https://datawrapper.dwcdn.net/aZQHB/3/" height="400px" width="100%" style="border: none" frameborder="0"></iframe></p>
<p>“Prisoners with these disabilities are at greater risk of serving longer, harder sentences,” <a href="https://theconversation.com/us-prisons-hold-more-than-550-000-people-with-intellectual-disabilities-they-face-exploitation-harsh-treatment-158407">Sarrett notes</a>.</p>
<p>They also run the <a href="https://doi.org/10.1080/14789949.2015.1062994">risk of exploitation and abuse</a> – both from other incarcerated people and from prison staff. As one man explained to Sarrett, officers look to see who only watches TV and never reads, marking them out for exploitation: “Some of the corrections officers … they’ll slide up onto the disability boy and use him, you know, making him feel like ‘This is my dog. This is my boy right here. Come and do this for me.’”</p>
<p>Meanwhile, needing extra time to process instructions – particularly in high-stress situations – can be interpreted as obstinacy by prison officers. In turn this can lead to prisoners with intellectual disabilities being written up for disciplinary issues, which can result in time added to a person’s sentence, removal of certain privileges or solitary confinement. A 2018 study found that over 4,000 people with serious mental health concerns were <a href="https://www.nyaprs.org/e-news-bulletins/2018/11/30/study-over-4-000-prisoners-w-serious-mental-illness-are-held-in-solitary-confinement">being held in solitary confinement</a> in the U.S.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/us-prisons-hold-more-than-550-000-people-with-intellectual-disabilities-they-face-exploitation-harsh-treatment-158407">US prisons hold more than 550,000 people with intellectual disabilities – they face exploitation, harsh treatment</a>
</strong>
</em>
</p>
<hr>
<h2>Guard brutality still an issue</h2>
<p>Between 2012 and 2016, <a href="https://bjs.ojp.gov/content/pub/pdf/msfp0116st.pdf">128 state and federal prisoners died as a result of homicide or accident</a>, according to the Bureau of Justice Statistics. Those were the most recent figures available to Heather Schoenfeld of Boston University when she <a href="https://theconversation.com/people-are-dying-in-us-prisons-and-not-just-from-covid-19-141358">wrote an article for The Conversation</a> in July 2020 looking at violence by corrections officers. Another problem with the data other than it not being up to date: The agency does not distinguish in the figures between incidents involving prison staff and prisoner-on-prisoner violence.</p>
<p>“In the absence of detailed and reliable data, what we do have are accounts of sadistic and retaliatory violence by prison guards against people in prison,” Schoenfeld writes.</p>
<p>She describes an “ongoing humanitarian crisis” in U.S. prisons of excessive force by corrections officers that has only been made worse by understaffing and overcrowding. “Studies show that officers who <a href="https://doi.org/10.1017/CBO9781139649681">work in chaotic and hostile work environments</a> are more likely to adopt an ‘us vs. them’ mentality and resort to retaliatory violence,” she writes.</p>
<p>She adds: “Similar to excessive police force, brutality by prison officers is part of systemic state violence against people of color, and Black people specifically.”</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/people-are-dying-in-us-prisons-and-not-just-from-covid-19-141358">People are dying in US prisons, and not just from COVID-19</a>
</strong>
</em>
</p>
<hr>
<h2>COVID-19 and visitation rights</h2>
<p>Brutality and neglect are not the only things killing America’s incarcerated population. Prisoners have been particularly vulnerable during the coronavirus pandemic. Incarcerated men and women living in cramped indoor conditions with only basic sanitation and poor ventilation are at <a href="https://eji.org/news/covid-19s-impact-on-people-in-prison/">higher risk of infection and death</a> from the virus.</p>
<p>They have also face being isolated from their families for extended periods as a result of lockdown measures. <a href="https://hcap.utsa.edu/directory/alexander-testa-ph-d/">Alexander Testa</a> and <a href="https://hcap.utsa.edu/directory/chantal-fahmy-ph-d/">Chantal Fahmy</a> at The University of Texas at San Antonio <a href="https://theconversation.com/no-visits-and-barely-any-calls-pandemic-makes-separation-even-scarier-for-people-with-a-family-member-in-prison-158592">looked at the effect this has had</a> on the prisoners’ families.</p>
<p>The two scholars surveyed 500 people with a loved one serving time behind bars in Texas during the summer of 2020. What they found was a high level of concern.</p>
<p>“My son has been locked in a cell with temperatures over 100 degrees for up to 23-plus hours a day for weeks on end now due to COVID,” one 74-year-old woman told Testa and Fahmy. “I fear he will either perish from the conditions or somehow take his own life.”</p>
<p>The concern was not only of the risk of infection but also the sudden removal of visitation rights.</p>
<p>During the pandemic Texas prisons <a href="https://www.wfaa.com/article/news/health/coronavirus/coronavirus-texas/269-38e0b2c8-3cdc-4afd-acfb-5ab12ca39566">severely limited all types of contact</a> with the outside world – including video and phone calls. Visitation was barred completely on March 13, 2020, and only resumed a year later.</p>
<p>Reflecting on the this, alongside other grievances including “deplorable” living conditions “and lack of medical and dental care,” one mother of an incarcerated person commented: “We don’t incarcerate, we torture.”</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/no-visits-and-barely-any-calls-pandemic-makes-separation-even-scarier-for-people-with-a-family-member-in-prison-158592">No visits and barely any calls – pandemic makes separation even scarier for people with a family member in prison</a>
</strong>
</em>
</p>
<hr>
<p>[<em>Get the best of The Conversation, every weekend.</em> <a href="https://theconversation.com/us/newsletters/weekly-highlights-61?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=weeklybest">Sign up for our weekly newsletter</a>.]</p><img src="https://counter.theconversation.com/content/167591/count.gif" alt="The Conversation" width="1" height="1" />
The Attica uprising marked a milestone in the prisoners’ rights movement. Many of the grievances aired in 1971 are still relevant to today’s incarcerated population.Matt Williams, Senior International EditorLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1584072021-05-07T12:44:05Z2021-05-07T12:44:05ZUS prisons hold more than 550,000 people with intellectual disabilities – they face exploitation, harsh treatment<figure><img src="https://images.theconversation.com/files/399053/original/file-20210505-15-1fhl6wk.jpg?ixlib=rb-1.1.0&rect=18%2C9%2C6211%2C4138&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The rate of intellectual disabilities is disproportionately high among incarcerated populations.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/prisoner-at-the-bolivar-county-correctional-facility-waits-news-photo/1315034536?adppopup=true">Spencer Platt/Getty Images</a></span></figcaption></figure><p>Prison life in the U.S. is tough. But when you have an <a href="https://www.psychiatry.org/patients-families/intellectual-disability/what-is-intellectual-disability">intellectual, developmental or cognitive disability</a> – as hundreds of thousands of Americans behind bars do – it can make you especially vulnerable.</p>
<p>In March, the Bureau of Justice Statistics, the federal agency tasked with gathering data on crime and the criminal justice system, <a href="https://www.bjs.gov/content/pub/pdf/drpspi16st.pdf">published a report</a> that found roughly two in five – 38% – of the 24,848 incarcerated people they surveyed across 364 prisons reported a disability of some sort. Across the entire incarcerated population, that translates to some 760,000 people with disabilities living behind bars.</p>
<p>Around a quarter of those surveyed reported having a cognitive disability, such as difficulty remembering or making decisions. A similar proportion reported at some point being told they had attention deficit disorder, and 14% were told they had a learning disability.</p>
<p><iframe id="aZQHB" class="tc-infographic-datawrapper" src="https://datawrapper.dwcdn.net/aZQHB/2/" height="400px" width="100%" style="border: none" frameborder="0"></iframe></p>
<p>As a <a href="http://catalog.college.emory.edu/department-program/faculty.php?YToxOntzOjI6ImlkIjtzOjM6Ijc5MyI7fQ==">scholar who has researched disability</a> in prison and conducted in-depth interviews with several adults with intellectual and developmental disabilities in the criminal justice system, I’m all too aware of the problems that incarcerated people with disabilities face. Prisoners with these disabilities are at greater risk of serving <a href="https://www.semanticscholar.org/paper/An-Estimate-of-the-Prevalence-of-Autism-Spectrum-in-Fazio-Pietz/c9423ebfa2f6fbff89b1370b4d7f7b0f26ff831b">longer</a>, <a href="https://journals.sagepub.com/doi/10.1177/0032855597077004002">harder sentences</a> and being exploited and <a href="https://law.asu.edu/sites/default/files/pdf/academy_for_justice/Reforming-Criminal-Justice_Vol_3.pdf">abused</a> by prison staff or other incarcerated people. </p>
<h2>Stigma and crimes of survival</h2>
<p>The rate of both physical and intellectual disability among the prison population is disproportionately high. According to the Centers for Disease Control and Prevention, <a href="https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html">26% of Americans</a> report any kind of disability. Of those, 10.8% reported a cognitive disability.</p>
<p>This is less than half of the proportion of those in prisons. And rates appear to be on the rise – in 2011-2012, <a href="https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html">32% of people incarcerated in prisons reported a disability</a>, with 19% stating a cognitive disability.</p>
<p>High as they are, these rates are likely to be an underestimate. They are based on self-reports, and research has shown <a href="https://doi.org/10.1352/2009.47:13-23">many people fail to report a disability</a> – particularly an intellectual or cognitive disability – to avoid stigma or because they simply don’t know they have one. </p>
<p>The Bureau of Justice Statistics has also found that people with cognitive, intellectual and developmental <a href="https://www.bjs.gov/content/pub/pdf/dpji1112.pdf">disabilities are more prevalent in jails</a> – where people are sent immediately after arrest, to await trial or to serve a sentence of one year or less – than prisons. Jails tend to be associated with what have been called “<a href="http://humantollofjail.vera.org/legal-perils-of-homelessness/">crimes of survival</a>,” such as shoplifting and loitering. These offenses are linked to unemployed people and people experiencing homelessness – communities in which <a href="https://doi.org/10.1111/j.1365-2788.2010.01366.x">rates of disabilities are higher</a>.</p>
<p>As a result, a <a href="https://www.prisonpolicy.org/blog/2017/08/23/disability/">disproportionate amount of people with disabilities</a> enter America’s criminal justice system. I see this in my research on intellectual and developmental disabilities – diagnoses like autism, fetal alcohol syndrome, ADD/ADHD, Down syndrome, and general cognitive impairment are common in our criminal justice system.</p>
<h2>In jail, no one listens</h2>
<p>Between 2018 and 2019, I <a href="https://doi.org/10.1016/j.ssaho.2021.100122">interviewed 27 people with these disabilities</a> about their interaction with the criminal justice system. Eighteen reported having been arrested and/or incarcerated.</p>
<p>Many spoke of the harm and difficulties they face throughout the criminal justice system, from courts to being behind bars.</p>
<p>One man I interviewed who had various learning and attention-related disabilities and was in special education as a child told me: “I was in jail one time [because] when I didn’t understand the questions the judge was asking me, and she sentence me to three months in [county jail] because I didn’t understand.” Officially, this was for disorderly conduct. </p>
<p>Confusion in prison and jail can lead to <a href="https://www.themarshallproject.org/2020/11/02/prison-is-even-worse-when-you-have-a-disability-like-autism">violence or danger</a>. Needing time to process instructions, particularly in high-stress situations, can be interpreted as obstinacy by staff and officers in charge. One middle-aged man who experienced incarceration on a few occasions told me that if you can’t process instructions, sometimes you are physically forced to comply. He provided the example of seeing someone with mental health needs not going to the shower when requested: “In jail, they don’t have time for that. They’ll just throw you in the shower. They’re not supposed to, but I’ve seen that before.” </p>
<p>Further, being seen as obstinate can lead to disciplinary reports in prison or jail, which could result in added time to someone’s sentence or the removal of certain privileges. It could also <a href="http://jaapl.org/content/38/1/104">result in solitary confinement</a> – something known to exacerbate and create <a href="https://doi.org/10.1086/696041">mental health concerns</a> and which has been labeled as torture by the <a href="https://news.un.org/en/story/2011/10/392012-solitary-confinement-should-be-banned-most-cases-un-expert-says">United Nations</a> and <a href="https://www.hrw.org/news/2012/06/18/us-look-critically-widespread-use-solitary-confinement#">human rights groups</a>. One <a href="https://www.nyaprs.org/e-news-bulletins/2018/11/30/study-over-4-000-prisoners-w-serious-mental-illness-are-held-in-solitary-confinement">study from 2018 found</a> that over 4,000 people with serious mental health concerns were being held in solitary confinement in the U.S. Again, this is likely to be an underestimate.</p>
<p>Incarcerated people with intellectual, developmental and cognitive disabilities <a href="https://doi.org/10.1080/14789949.2015.1062994">risk being exploited</a> by both officers and fellow inmates. One person I interviewed who had experienced incarceration said officers look for those who have a disability by noting who only watches TV and never reads, marking them for exploitation. He went on to say that “some of the corrections officers, they be doing things they ain’t got no business doing. So they’ll slide up onto the disability boy and use him, you know, because he’d making him feel like ‘This is my dog. This is my boy right here. Come and do this for me.’ And they’ll run and do it. So I think people with disabilities are used more by deceptive corrections guards than people that read.”</p>
<p>Rates of these disabilities are even higher among incarcerated women, according to the Bureau of Justice Statistics report. This might be related to the fact that women have much <a href="http://doi.org/10.3390/ijerph17051725">higher histories of abuse and trauma</a>, or because they are <a href="https://ramh.org/guide/gender-differences-in-mental-health">more willing to report these disabilities</a>.</p>
<p>One woman with cerebral palsy and unidentified intellectual disabilities I spoke with said that in most jails she’d report her disability, but no one would listen to her.</p>
<h2>Hidden behind bars</h2>
<p>The disproportionate rates of cognitive, intellectual and developmental disability in U.S. prisons and jails have rarely formed part of the conversation on reforming our police and prison system. When discussing mental health in prison, often the <a href="https://www.treatmentadvocacycenter.org/evidence-and-research/learn-more-about/3695">focus is on psychiatric disabilities</a>, like schizophrenia and bipolar disorder. There is good reason for this – people with these kinds of disabilities are also at <a href="https://www.treatmentadvocacycenter.org/evidence-and-research/learn-more-about/3695">high risk for incarceration</a>.</p>
<p>But, I believe, it has meant that the needs of incarcerated people with intellectual and developmental disabilities have been neglected. At present, there is <a href="http://doi.org/10.1016/j.psychres.2017.12.036">little support for people with these disabilities</a> in incarcerated settings. Prisons and jails could ensure staff are better trained to interact with people with intellectual and developmental disabilities.</p>
<p>[<em>Deep knowledge, daily.</em> <a href="https://theconversation.com/us/newsletters/the-daily-3?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=deepknowledge">Sign up for The Conversation’s newsletter</a>.]</p>
<p>We could also explore strategies to divert people with intellectual, learning and cognitive disabilities away from the criminal justice system. Cities are increasingly exploring alternatives to police for responding to mental health crises, like the <a href="https://whitebirdclinic.org/cahoots/">CAHOOTS model in Oregon</a> in which a medic and mental health expert are deployed as first responders. Additionally, there could be more attention to these disabilities in <a href="https://bja.ojp.gov/sites/g/files/xyckuh186/files/Publications/CSG_MHC_Research.pdf">mental health courts</a>, which combine court supervision with community-based services. They have been shown to be <a href="https://doi.org/10.1016/j.jcrimjus.2010.11.003">somewhat effective at reducing recidivism</a>, but which <a href="http://doi.org/10.1007/s10979-010-9250-4">seem to focus on people</a> with schizophrenia, bipolar, major depression or PTSD.</p>
<p>But before that, awareness about the presence of disability in incarcerated settings needs to be higher. The plight of incarcerated prisoners with intellectual disabilities has long been an issue lost amid America’s sprawling prison network.</p><img src="https://counter.theconversation.com/content/158407/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jennifer Sarrett does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A quarter of prisoners report a cognitive, intellectual or developmental disability. But the true figure could be even higher.Jennifer Sarrett, Lecturer, Center for Study of Human Health, Emory UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1422622020-08-05T18:33:42Z2020-08-05T18:33:42ZCOVID-19 has isolated disabled people from family, love, sex<figure><img src="https://images.theconversation.com/files/351132/original/file-20200804-24-1xoveur.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4495%2C2954&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many disabled people are facing difficulties maintaining and forming intimate relationships during COVID-19.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>For the <a href="https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018002-eng.htm">millions of disabled people</a> living in Canada, COVID-19 containment measures have posed unique challenges to their health and well-being. </p>
<p>Those challenges have included increased social isolation, loss of personal support workers, disruption of vital health services and difficulties accessing basic necessities and information. Many disabled people are also facing difficulties maintaining and forming intimate relationships during COVID-19.</p>
<p>It’s been well-documented that disabled people encounter more complex barriers and constraints to exercising their rights to “<a href="https://kenplummer.com/publications/selected-writings-2/intimate-citizenship/">intimate citizenship</a>,” which refers to our rights to access family, friends, sex and sexuality, and to parent. These rights are enshrined in the United Nations’ <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html">Convention on the Rights of Persons with Disabilities</a>, which Canada signed and ratified.</p>
<p>We are just starting to understand how the pandemic has intensified these barriers.</p>
<p>Even before the pandemic, <a href="https://irisinstitute.ca/wp-content/uploads/sites/2/2017/07/CACL-and-PFC-Brief-Accessibility-and-Poverty-Reduction-Final-02-June-2017.pdf">a significant number of disabled people reported feeling socially isolated and lonely</a>. Social isolation has a number of negative repercussions, including <a href="https://doi.org/10.1016/j.tics.2020.05.016">poor mental and physical health</a>. The isolation and loneliness that many disabled people typically experience has been exacerbated by responses to the COVID-19 pandemic.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/loneliness-could-kill-you-87217">Loneliness could kill you</a>
</strong>
</em>
</p>
<hr>
<h2>Activities put on hold</h2>
<p>For example, due to social distancing measures, many of the programs, activities and spaces that disabled people make use of have been temporarily suspended.</p>
<figure class="align-center ">
<img alt="A disabled athlete wearing a helmet is seen, his head bowed, racing in his bright green racing wheelchair." src="https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/350294/original/file-20200729-33-74q0nc.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">Many of the places and activities disabled people enjoy are unavailable during the pandemic.</span>
<span class="attribution"><span class="source">Seth Kane/Unsplash</span></span>
</figcaption>
</figure>
<p>Unfortunately, some disabled people are only able to see their romantic partners at these organized activities. Similarly, some may need staff support, people who will help them pursue social, romantic and sexual activities, and these supports have been scaled back to the basics. For example, staff may support disabled people in navigating dating apps, staying in touch with romantic partners and participating in community events where they can meet people. </p>
<p>Even during normal times, accessible spaces where disabled people can form intimate relationships are extremely limited. These limited spaces and opportunities are related to ableist beliefs that disabled people are undesirable and not interested in or capable of having romantic and sexual lives. These beliefs deny disabled peoples’ agency.</p>
<p>Even when recognized, sexuality is often seen as a luxury, rather than a right. In general, <a href="https://www.theguardian.com/commentisfree/2019/mar/18/disabled-people-sexuality-dating-society-taboo-marginalise">disability and sexuality remains a taboo</a> — constrained, policed, prohibited. Consequently, this important aspect of social life has been overlooked during the pandemic.</p>
<h2>Connecting with partners almost impossible</h2>
<p>For those who are involved in institutionalized care arrangements, they may find that their time and daily routines are even more restricted than before. Opportunities to connect with family, friends and romantic/sexual partners are very difficult to secure.</p>
<figure class="align-center ">
<img alt="A woman sit on a wheelchair-bound man's lap as he points to something in the distance on a beach." src="https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/351135/original/file-20200804-16-cc42up.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">Connecting with romantic partners can be next to impossible for disabled people during the pandemic.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p><a href="https://www.mississauga.com/opinion-story/10072508-group-homes-need-to-rethink-visiting-rules-during-covid-19/">Visitation bans and lack of contact with family members</a> have cut disabled people off from their support systems and people familiar with their needs. </p>
<p>Families of disabled people have also been at a loss in terms of access to information, guidance and services related to fast-changing circumstances brought by COVID-19.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/im-scared-parents-of-children-with-disability-struggle-to-get-the-basics-during-coronavirus-139467">'I'm scared': parents of children with disability struggle to get the basics during coronavirus</a>
</strong>
</em>
</p>
<hr>
<p>There is a <a href="https://eugenicsnewgenics.com/2014/05/14/isolation-then/">history of forced institutionalization in Canada</a>. For disabled people who have experienced institutionalization, who lack access to the communities where they live, who are unable to visit with family, friends or romantic and sexual partners, <a href="https://www.cbc.ca/news/opinion/opinion-covid-19-public-health-institutions-risk-1.5510546">the recent separation from community life can take on a different meaning</a>. Amid COVID-19, unfortunately, institutionalized care can look a lot like institutionalization.</p>
<p>Many disabled people living in their own homes or with family members, on the other hand, require support from others in their daily lives. Having support persons in their home may, however, increase their vulnerability to COVID-19. </p>
<figure class="align-center ">
<img alt="A disabled man smiles as he rubs noses with his father in a park." src="https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C6016%2C4016&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/350297/original/file-20200729-25-1ii88de.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">Visitation bans and lack of contact with family members has cut off disabled people from their support systems and people familiar with their needs.</span>
<span class="attribution"><span class="source">(Piqsels)</span></span>
</figcaption>
</figure>
<p>At the same time, if direct care workers are unable or unwilling to come into work, people with disabilities may not have access to necessary supports, including personal care, food access, parenting support or support for virtual social connection.</p>
<h2>Gender-based violence</h2>
<p>The pandemic has also raised serious concerns around gender-based violence. Prior to the pandemic, <a href="https://www.dawncanada.net/main/wp-content/uploads/2014/03/English-Violence-January-2014.pdf">disabled women</a>, <a href="https://www.transequality.org/sites/default/files/docs/usts/USTS%20Full%20Report%20-%20FINAL%201.6.17.pdf">disabled trans women</a> and <a href="https://www.amnesty.ca/blog/rights-sex-workers-are-being-ignored-covid-19-response-conversation-jenn-clamen-canadian">woman-identifying disabled sex workers</a> already experienced higher rates of forms of abuse and violence when compared to non-disabled women. COVID-19 has increased these risks significantly.</p>
<p>The isolation that disabled people are experiencing may also be worsened by the fact that some, if not many, individuals <a href="https://aoda.ca/disability-and-technology-barriers/">lack access to technology</a> like computers, the internet and cellphones. These technologies would allow them to remain connected with others. </p>
<p>Some people may require support or training to use these technologies, support and training that’s no longer available. Others may not be “allowed” to use those technologies in their care homes. Disabled people are commonly infantilized (particularly people with intellectual disabilities) and viewed as incapable of navigating important technological resources.</p>
<h2>Left behind</h2>
<p>Disabled people are being left behind in our response to COVID-19. This is evident in the <a href="https://globalnews.ca/news/7039419/covid-19-disability-benefit-even-if-approved-would-miss-all-kinds-of-people/">meagre benefit that was initially offered to disabled people by the federal government</a> and in the myriad ways planning has not included them.</p>
<p>Importantly, within the larger and diverse disability community, some experience greater risk and disadvantage than others. <a href="https://www.peoplefirstofcanada.ca/wp-content/uploads/2020/04/Editorial-April15-2020-Markham-Response.jpg">Self-advocates with intellectual disabilities from People First Canada have shared how it feels to be “the left behind of the left behind.”</a></p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1275775200177553408"}"></div></p>
<p>It is essential that when addressing the current pandemic that no one is forgotten in our response.</p>
<p>Considerations with respect to disability, age, sexuality, gender, race, class, citizenship and social status must be taken into account.</p><img src="https://counter.theconversation.com/content/142262/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ann Fudge Schormans has in the past received funding from SSHRC and from the Developmental Service Branch of the Ontario government for research projects focused on intimate citizenship and parenting with an intellectual disability. Both projects have been completed.</span></em></p><p class="fine-print"><em><span>Alan Santinele Martino and Margaret Campbell 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>Even before the pandemic, disabled people reported feeling socially isolated and lonely. Their plight has only been exacerbated by responses to the COVID-19 pandemic.Alan Santinele Martino, PhD Candidate, Sociology, McMaster UniversityAnn Fudge Schormans, Associate professor of social work, McMaster UniversityMargaret Campbell, Adjunct assistant professor, Sociology, St. Thomas University (Canada)Licensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1314682020-04-24T06:08:31Z2020-04-24T06:08:31ZMums with an intellectual disability already risk family violence and losing their kids. Coronavirus could make things worse<figure><img src="https://images.theconversation.com/files/330252/original/file-20200424-47788-byou5r.jpg?ixlib=rb-1.1.0&rect=0%2C390%2C3529%2C2161&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">KieferPix/Shutterstock</span></span></figcaption></figure><p>The coronavirus pandemic is keeping us at home due to widespread unemployment, school closures and social distancing. This has already led to concerns about an upsurge in <a href="https://www.apa.org/topics/covid-19/domestic-violence-child-abuse" title="How COVID-19 may increase domestic violence and child abuse">domestic and family violence</a>.</p>
<p>But women with a disability, particularly those with an intellectual disability, are at even greater risk of <a href="http://wwda.org.au/wp-content/uploads/2019/12/The-Status-of-Women-and-Girls-with-Disability-Asutralia.pdf">gender-based violence</a>, affecting not only them but their families.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/are-you-worried-someone-you-care-about-is-thinking-of-suicide-heres-how-you-can-support-them-from-afar-135940">Are you worried someone you care about is thinking of suicide? Here's how you can support them from afar</a>
</strong>
</em>
</p>
<hr>
<p>Intellectual disability affects a person’s cognitive functioning in many varied ways. For some people, the effect on their ability to learn may not be severe enough to meet a threshold for clinical diagnosis but the impact on everyday life can be profound. </p>
<p>Some people with intellectual disability do not identify with the label of intellectual disability or wish to be defined by it. If they become parents, trying to “fly below the radar” can mean they avoid seeking help. </p>
<p><a href="https://doi.org/10.3109/13668250.2016.1218448" title="Prevalence of parents with intellectual disability in Australia">Researchers</a> say about 0.4% of Australian parents have an intellectual disability.</p>
<p>This equates to at least 17,000 parents who already <a href="https://aifs.gov.au/cfca/publications/parental-intellectual-disability-and-child-protection-key-i">face more challenges</a> than other parents. The COVID-19 pandemic could make things worse – particularly for mothers who are often socially isolated and at risk of violence from a partner. </p>
<h2>Victims of abuse</h2>
<p>The <a href="https://doi.org/10.1332/239868019X15475690594298" title="All I wanted was a happy life: the struggles of women with learning disabilities to raise their children while also experiencing domestic violence">control and coercion</a> partners use on these mothers may not conform to typical patterns of domestic abuse. It may involve withholding medication or using their fear of judgment about their disability to control them, so the violence can go undetected.</p>
<p>The following example is from <a href="https://doi.org/10.1080/09687599.2019.1647150" title="Benefits and limits of peer support for mothers with intellectual disability affected by domestic violence and child protection">research (by one of us, Susan)</a> and shows how this can happen.</p>
<p>Caroline (not her real name) was in special classes at school but did not receive any disability services. She was single and living alone in her mid-20s when she became pregnant. After she was hospitalised with post-natal depression, the child’s father got full custody. </p>
<blockquote>
<p>Caroline was devastated and alone and the man preyed upon her vulnerability, forcing Caroline to trade visits with her child for sex. He warned her to keep her mouth shut or she would not see her child. </p>
<p>When Caroline became pregnant again, she was terrified she would lose this child, too. She confided in a friend and, with the help of her church community, she was able to bring her baby home. The sexual abuse, however, continued.</p>
</blockquote>
<h2>Caught in the courts</h2>
<p>Parents with intellectual disability come to the attention of social services at high <a href="https://link.springer.com/article/10.1007/s40474-015-0042-x" title="Parents with Intellectual Disability in a Population Context">rates</a> and usually due to factors related to poverty, disadvantage and social isolation.</p>
<p>For example, they make up almost 10% of all care matters in the <a href="https://www.sciencedirect.com/science/article/abs/pii/S0145213403000048" title="Prevalence and outcomes for parents with disabilities and their children in an Australian court sample">New South Wales Children’s Court</a>. Internationally, up to <a href="https://drive.google.com/file/d/0B2v4ukYuvZF9b01tYkx6ZVdNVmM/view" title="Parents labelled with Intellectual Disability: Position of the IASSID SIRG on Parents and Parenting with Intellectual Disabilities">60%</a> of children are removed from a parent with intellectual disability. Parental neglect is the most common reason for child removal, which is the case for many families living in poverty. </p>
<p>What brings these parents to the notice of child protection officials is rarely the intellectual disability alone. It’s usually other compounding factors such a domestic violence, social isolation, limited resources, or adverse childhood experiences.</p>
<p>Once in the system, the parent’s disability tends to become the focus and concern. There is reliance on assessments that equate IQ with parenting capacity, despite the best <a href="https://aifs.gov.au/cfca/publications/parental-intellectual-disability-and-child-protection-key-i">evidence to the contrary</a>. These parents can be seen as a <a href="https://www.researchgate.net/publication/221801120_Children_of_parents_with_intellectual_disability_Facing_poor_outcomes_or_faring_okay">risk to their child’s development</a> but studies show they actually experience normal feelings of love and connection toward their parents.</p>
<p>Our <a href="https://idrs.org.au/site18/wp-content/uploads/2018/11/She-was-there-if-I-needed-to-talk-or-to-try-and-get-my-point-across-specialist-advocacy-for-parents-with-intellectual-disability-in-the-Australian.pdf">research</a> shows parents with intellectual disability feel they are made to jump through invisible hoops, with child protection workers failing to make their expectations clear.</p>
<p>One parent told us:</p>
<blockquote>
<p>When they come to our home, we feel like we’re doing things that are wrong. We were so confused.</p>
</blockquote>
<h2>Pandemic reduces parent support</h2>
<p>While the COVID-19 pandemic is affecting all Australian families, some services for vulnerable families have restricted their operations to minimise the spread of the virus. For example, some are offering <a href="https://dhs.sa.gov.au/services/coronavirus-covid-19-response/visiting-vulnerable-families-and-children">video chats</a> instead of home visits during the crisis.</p>
<p>The effects of self-isolation and physical distancing will compound existing problems for mothers with intellectual disability and their children who are at risk of failing to get the help they need.</p>
<p>These families are losing access to crucial educational and family supports at this critical time. They are also likely to be affected by changes to the provision of disability services during the COVID-19 crisis.</p>
<p>The National Disability Insurance Scheme (NDIS) now recognises <a href="https://www.ndis.gov.au/understanding/ndis-and-other-government-services/child-protection-and-family-support">parenting as a support need</a>. But there are <a href="https://doi.org/10.3109/13668250.2016.1151864" title="Support planning with people with intellectual disability and complex support needs in the Australian National Disability Insurance Scheme">complex eligibility requirements</a> that assess individual functioning and may miss or minimise the impact of, say, housing instability and lack of social support on parenting capacity. </p>
<p>The pandemic is creating challenges and placing constraints on the provision of community-based and in-home disability services. NDIS participants are being asked to evaluate what services they “<a href="https://www.ndis.gov.au/coronavirus/participants-coronavirus-covid-19">can’t live without</a>”.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-do-more-men-die-from-coronavirus-than-women-136038">Why do more men die from coronavirus than women?</a>
</strong>
</em>
</p>
<hr>
<p>As services pivot to target high-risk groups like those needing help with self-care, and primarily become focused on health-related needs, supports for mothers with intellectual disability are at risk of being reduced.</p>
<p>We need to protect those families where the primary caregiver is a mother with an intellectual disability. If we fail to do this we are likely to see a spike in the incidence of child removal – something that takes generations to heal.</p><img src="https://counter.theconversation.com/content/131468/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors 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>Self-isolation and physical distancing only add to the problems for mothers with an intellectual disability who are at risk of failing to get the help they need.Susan Collings, Research Fellow, University of SydneyMargaret Spencer, Lecturer, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1343832020-03-26T02:38:24Z2020-03-26T02:38:24ZPeople with a disability are more likely to die from coronavirus – but we can reduce this risk<figure><img src="https://images.theconversation.com/files/323087/original/file-20200325-168912-2rp3q8.jpg?ixlib=rb-1.1.0&rect=48%2C20%2C4565%2C3272&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/paralyzed-man-praying-on-his-wheelchair-597692201">Shutterstock</a></span></figcaption></figure><p>The COVID-19 pandemic is terrifying for many of us, but people with a disability have more reason to worry than most. </p>
<p>People with a disability often have <a href="https://www.who.int/news-room/fact-sheets/detail/disability-and-health">underlying health conditions</a> that make them more susceptible to serious illness or death if they contract COVID-19. They may also be more at risk of contracting the virus if they have disability workers entering their home. </p>
<p>The federal government has made several policy announcements to protect older Australians in aged care facilities, hospitals and GP clinics, but we’re yet to see the same consideration for people with disabilities. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/private-hospitals-get-grace-period-before-freeze-on-non-urgent-elective-surgery-134684">Private hospitals get grace period before freeze on non-urgent elective surgery</a>
</strong>
</em>
</p>
<hr>
<h2>People with disability are already disadvantaged</h2>
<p><a href="https://www.and.org.au/pages/disability-statistics.html">One in five people</a> in Australia has a disability. Of these, more than three-quarters report a physical disability, although many report multiple types.</p>
<p>People with disabilities are at higher risk of serious illness and death from coronavirus death due to <a href="https://www.who.int/news-room/fact-sheets/detail/disability-and-health">higher rates of co-exisiting health conditions</a> such as diabetes, asthma and <a href="https://theconversation.com/explainer-what-is-chronic-obstructive-pulmonary-disease-25539">chronic pulmonary obstructive disease</a>:</p>
<hr>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/320981/original/file-20200317-60906-11kmy5p.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/320981/original/file-20200317-60906-11kmy5p.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/320981/original/file-20200317-60906-11kmy5p.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=341&fit=crop&dpr=1 600w, https://images.theconversation.com/files/320981/original/file-20200317-60906-11kmy5p.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=341&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/320981/original/file-20200317-60906-11kmy5p.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=341&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/320981/original/file-20200317-60906-11kmy5p.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=429&fit=crop&dpr=1 754w, https://images.theconversation.com/files/320981/original/file-20200317-60906-11kmy5p.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=429&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/320981/original/file-20200317-60906-11kmy5p.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=429&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<hr>
<p>People with disability are more likely to be <a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/9781118924396.wbiea2316">poorer, not working and more socially isolated</a>. This makes them more vulnerable to poor health outcomes during the pandemic. </p>
<p>Evidence for previous pandemics shows that <a href="https://www.liebertpub.com/doi/10.1089/bsp.2014.0032">health inequities worsen during epidemics</a> as more marginalised communities have fewer resources (financial and social) and struggle to access necessary supplies and services. </p>
<p>On top of this, health information is rarely presented in an accessible format for children and adults with intellectual disabilities, such as Easy English (a style of writing that’s simple and concise) and/or pictorial formats. </p>
<h2>People with disabilities must not be de-prioritised</h2>
<p>At a time when there is unprecedented demand for health services, we need to ensure people with disability don’t miss out. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-well-avoid-australias-hospitals-being-crippled-by-coronavirus-133920">How we'll avoid Australia's hospitals being crippled by coronavirus</a>
</strong>
</em>
</p>
<hr>
<p>Health services can be <a href="https://www.aihw.gov.au/reports/disability/access-health-services-disability/contents/content">inadequate</a> for people with disability at the best of times because of barriers such as physical inaccessibility, lack of understanding of a person’s disability, and cost. </p>
<p>We’ve already seen reports around the world that older people and those with disability have been de-prioritised in health services. </p>
<p>In Italy, the professional organisation that sets <a href="http://www.siaarti.it/SiteAssets/News/COVID19%20-%20documenti%20SIAARTI/SIAARTI%20-%20Covid19%20-%20Raccomandazioni%20di%20etica%20clinica.pdf">guidelines</a> for intensive care has stated health resources should prioritise those with the <a href="https://www.theatlantic.com/ideas/archive/2020/03/who-gets-hospital-bed/607807/">highest chance</a> of “therapeutic success”. </p>
<p>If people with disability have pre-existing health conditions, or if their particular impairment means their chance of recovery is diminished, they may be de-prioritised for intensive care. </p>
<p>Last week the Australia and New Zealand Intensive Care Society <a href="https://www.anzics.com.au/wp-content/uploads/2020/03/ANZICS-COVID-19-Guidelines-Version-1.pdf">updated its guidelines</a> for doctors, acknowledging that when the coronavirus pandemic peaks, difficult decisions may need to be made. </p>
<p>It recommends doctors make decisions based on the probable outcome, whether people have underlying health conditions, and the “burden of treatment” for the patient and their family. </p>
<p>The guidelines don’t mention people with disabilities, but it’s easy to see how an assessment of the “burden of treatment” could include people with intellectual disability becoming upset by treatment, or taking more time to deliver. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-coronavirus-pandemic-is-forcing-us-to-ask-some-very-hard-questions-but-are-we-ready-for-the-answers-132581">The coronavirus pandemic is forcing us to ask some very hard questions. But are we ready for the answers?</a>
</strong>
</em>
</p>
<hr>
<h2>Access to protective equipment and support</h2>
<p>For people who require support with activities of daily living (dressing, bathing, meal preparation, and so on) it’s likely they have one or possibly several care workers who will move in and out of their home every day. </p>
<p>Currently, many workers don’t have access to <a href="https://www.theguardian.com/world/2020/mar/17/australians-with-disabilities-missing-out-on-essential-services-as-covid-19-crisis-escalates">protective equipment</a>, such as <a href="https://www.abc.net.au/news/2020-03-20/disability-sector-particularly-at-risk-of-coronavirus-impact/12068090">gloves and masks</a>. </p>
<p>Disability care workers’ movement across multiple homes makes it likely that some of them will acquire and transmit COVID-19 to the people they care for.</p>
<p>Many of those working in care roles are among some of the <a href="https://theconversation.com/disability-workers-are-facing-longer-days-with-less-pay-93953">lowest paid</a> in our society and many are employed on a <a href="https://theconversation.com/new-risks-for-disability-care-workers-under-the-ndis-63812">casual basis</a>. If they don’t work a shift, they will not be paid. </p>
<p>This means we might be incentivising people who desperately need income to take risks with their health and the health of the people they’re supporting.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/323101/original/file-20200326-168894-ozi2fi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/323101/original/file-20200326-168894-ozi2fi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/323101/original/file-20200326-168894-ozi2fi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/323101/original/file-20200326-168894-ozi2fi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/323101/original/file-20200326-168894-ozi2fi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/323101/original/file-20200326-168894-ozi2fi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/323101/original/file-20200326-168894-ozi2fi.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">Many people with disabilities don’t have the option of self-isolating.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/two-friends-disability-rehabilitation-center-watching-531537415">Shutterstock</a></span>
</figcaption>
</figure>
<p>Some providers are choosing to <a href="https://www.theguardian.com/world/2020/mar/17/australians-with-disabilities-missing-out-on-essential-services-as-covid-19-crisis-escalates">cancel shifts</a> and not put their staff at risk. This is one way to protect staff, but will leave some people with a disability in real need. </p>
<p>Even before this pandemic there were disability workforce <a href="https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/BriefingBook44p/CaringWorkforce">shortages</a>. This is likely to increase as the number of infections rises. </p>
<h2>What should we do?</h2>
<p>The <a href="https://credh.org.au/news-events/disability-and-health-sectors-need-a-coordinated-response-during-covid-19/">following actions</a> are urgently needed to protect people with a disability as the pandemic progresses:</p>
<ul>
<li><p>the establishment of an expert committee with members who have expertise in the disability and health sectors to advise government </p></li>
<li><p>a new MBS item to develop COVID-19 health care plans with children and adults with complex disabilities, so they know how to implement social distancing and hygiene measures, and how to access tests and treatment</p></li>
<li><p>a dedicated coronavirus information hotline for people with disabilities, families and disability services, staffed by people with deep understanding of disability issues and underlying health issues</p></li>
<li><p>significant supplies of personal protective equipment (such as masks, gloves and gowns) for the disability support workforce to reduce transmission</p></li>
<li><p>government guarantees of income for care workers who may be sick, have caring responsibilities or have their shifts cancelled</p></li>
<li><p>the mobilisation of a broader disability workforce, for example by drawing on allied health students.</p></li>
</ul>
<p>These actions won’t address all the inequities people with disabilities face, but they will be a good start.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/coronavirus-will-devastate-aboriginal-communities-if-we-dont-act-now-133766">Coronavirus will devastate Aboriginal communities if we don't act now</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/134383/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Helen Dickinson receives funding from the Australian Research Council The National Health and Medical Research Council and the Victorian and Commonwealth governments. </span></em></p><p class="fine-print"><em><span>Anne Kavanagh receives funding from the Australian Research Council, the National Health and Medical Research Council and the Victorian and Commonwealth governments.</span></em></p>The government has made several announcements to safeguard aged care residents and those in hospitals, but we’re yet to see the same attention paid to the one in five Australians with a disability.Helen Dickinson, Professor, Public Service Research, UNSW SydneyAnne Kavanagh, Professor of Disability and Health, Melbourne School of Population and Global Health, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1335402020-03-17T15:12:37Z2020-03-17T15:12:37ZHow coronavirus could affect the wellbeing of people with intellectual disabilities<figure><img src="https://images.theconversation.com/files/321065/original/file-20200317-60871-u2fbm0.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5751%2C3828&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">This is a confusing time for everyone – especially those who have intellectual disabilities.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/kid-adhd-dont-paying-attention-his-1404484607">Photographee.eu/ Shutterstock</a></span></figcaption></figure><p>We are all feeling <a href="https://theconversation.com/coronavirus-is-stressful-here-are-some-ways-to-cope-with-the-anxiety-133146">more anxious than usual</a>. We may be worried about accessing food and services, going to work, enduring self-isolation, or catching COVID-19. While some anxiety is normal, some of us may be more resilient to changes in our routines and the general uncertainty the world is experiencing. But for the <a href="https://www.mentalhealth.org.uk/learning-disabilities/help-information/learning-disability-statistics-">1.5 million people</a> in the UK with an intellectual disability, these effects may be much greater. </p>
<p>People with intellectual disabilities are more likely to <a href="https://www.nice.org.uk/guidance/ng54/chapter/Context">have a mental health condition</a> than the general population. In the UK, it’s estimated that 40% of adults and 36% of children and young people with intellectual disabilities <a href="https://www.nice.org.uk/guidance/ng54/resources/mental-health-problems-in-people-with-learning-disabilities-prevention-assessment-and-management-pdf-1837513295557">experience mental health problems</a>, like depression or anxiety, at any point in time. Structure and routines can reduce anxiety for people with intellectual disabilities – but at a time when structure and routine is quickly changing, this can have a big effect on emotional and mental wellbeing. It could also make mental health conditions worse.</p>
<p>As more people work from home or self-isolate to avoid spreading or contracting COVID-19, this is likely to have a direct effect on how people with intellectual disabilities are supported – by both paid carers and family members. Changes to a person’s routine (including not being able to go out), or having regular care staff temporarily replaced with someone new (in the event a carer might have to self-isolate or becomes ill), can be unsettling and may increase stress and anxiety. Sudden, unexpected changes in the care support team could also mean some people may not have enough support. </p>
<p>Unexpected changes are also difficult for care providers who may not know how best to provide support for a person that they don’t know in an unfamiliar place. There’s also the risk that masks and protective clothing might be alarming to people with intellectual disabilities, especially if they aren’t as resilient to changes. </p>
<h2>Unexpected changes</h2>
<p>Competing with panic-buying shoppers can also put vulnerable people at risk. Some people with intellectual disabilities and autism may have <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6715205/">very rigid self-imposed diets</a>, with a limited range of foods they will eat. Autistic people can often be <a href="https://www.autism.org.uk/about/behaviour/sensory-world.aspx">very sensitive to changes</a> in food tastes, textures, and smells caused by sensory overload. As well as increasing anxiety, being unable to buy their usual foods because of food shortages and not being able to shop in the usual supermarket at the usual time of day can lead to a limited diet, as substitutes may be unacceptable.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/321066/original/file-20200317-60901-4g6hwg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/321066/original/file-20200317-60901-4g6hwg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/321066/original/file-20200317-60901-4g6hwg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/321066/original/file-20200317-60901-4g6hwg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/321066/original/file-20200317-60901-4g6hwg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/321066/original/file-20200317-60901-4g6hwg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/321066/original/file-20200317-60901-4g6hwg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Panic buying might make it difficult to follow their usual diet.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/berlin-germany-march-3-2020-emtpy-1662000565">Jakob Weyde/ Shutterstock</a></span>
</figcaption>
</figure>
<p>For others, even something as small as having to use a different brand of cleaning products with a different smell (because their usual one isn’t available) <a href="https://www.autism.org.uk/about/behaviour/sensory-world.aspx">can cause stress</a>. These significant changes in a person’s life can, in some people, lead to <a href="https://www.challengingbehaviour.org.uk/about-us/about-challenging-behaviour/what-is-challenging-behaviour.html">adverse behaviours</a>, such as hurting other people, hurting themselves and destroying property, or even a <a href="https://www.anxietyuk.org.uk/get-help/anxiety-information/frequently-asked-questions/">relapse of a mental illness</a>. </p>
<p>The current unpredictable situation is difficult for all of us to make sense of. However, it may be particularly stressful for people who have trouble communicating. Being unable to understand why the routine has changed suddenly – and without being part of the decision-making process – can make adjusting difficult. It may also be hard for them to make sense of why they aren’t interacting with people who they’re close with, and being supported by people they don’t know.</p>
<p>In light of recent government advice, managers of care home facilities and supported living apartments are <a href="https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults">beginning to impose lockdowns</a> to make social distancing possible, and to protect both staff and the people they support. However, it’s very likely these measures will do little to reduce anxiety and any subsequent fears and adverse behaviours.</p>
<p>People with intellectual disabilities <a href="https://webarchive.nationalarchives.gov.uk/20160704153130/http://www.improvinghealthandlives.org.uk/uploads/doc/vid_7479_IHaL2010-3HealthInequality2010.pdf">already face health inequalities</a>, which means that they may not be able to get the same quality of healthcare as other people. They may also experience worse illnesses and disease, and there’s a significant risk of dying at a younger age. We need to consider not only the very real risk of becoming infected and spreading COVID-19, but also the consequences on the mental and emotional wellbeing of people with intellectual disabilities. </p>
<p>Working with social care and healthcare providers will be essential for developing good quality information about supporting people with intellectual disabilities during this time. This will help carers and family members effectively manage the changes that may take place. Instructions about reducing the risk of infection will also be necessary for families and care support organisations. This current situation is unlike anything most of us have experienced, so at the moment it may be challenging to know the best way of helping those with intellectual disabilities and their families and carers.</p><img src="https://counter.theconversation.com/content/133540/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Danielle Adams 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>Sudden changes to routine and care might worsen mental health conditions, like anxiety, in autistic people or those with other intellectual disabilities.Danielle Adams, Independent Specialist Mental Health Pharmacist and PhD Candidate, University of WarwickLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1194152019-08-01T13:12:52Z2019-08-01T13:12:52ZPeople with intellectual disabilities are often not told about their medicines and their potential side effects<figure><img src="https://images.theconversation.com/files/286487/original/file-20190731-186829-161h3c4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/298303490?src=I35ce7Ngpy26Mj3f4Q5sig-1-34&studio=1&size=medium_jpg">VonaUA/Shutterstock</a></span></figcaption></figure><p>The <a href="https://www.mentalhealth.org.uk/learning-disabilities/help-information/learning-disability-statistics-">1.5m people</a> in the UK with an intellectual disability experience significant health inequality. <a href="http://complexneeds.org.uk/modules/Module-4.1-Working-with-other-professionals/All/downloads/m13p020c/emerson_baines_health_inequalities.pdf">Research</a> shows that they are more likely to develop health problems than the general population, they are more likely to have <a href="https://www.mencap.org.uk/learning-disability-explained/research-and-statistics/health/health-inequalities">reduced access</a> to healthcare, and they are more likely to receive poorer care. </p>
<p>A 2018 <a href="http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR_Annual_Report_2018%20published%20May%202019.pdf">report</a> from the Learning Disability Mortality Review Programme found that people with intellectual disabilities also die a lot younger. On average, men die 23 years earlier and women die 27 years earlier compared with the general population. </p>
<p>Our <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/jar.12643">latest study</a> adds to the evidence of these health inequalities. It shows that many people with intellectual disability, who can make decisions about their everyday life, aren’t given clear information about their medication. As a result, they often don’t understand the drugs prescribed for them or their potential side effects. </p>
<h2>Legal consequences</h2>
<p>The <a href="https://www.england.nhs.uk/wp-content/uploads/2016/07/access-info-stndrd-er-upd-jul16.pdf">Accessible Information Standard</a> states that all organisations providing NHS care and publicly funded adult social care must ensure that people with intellectual disability receive information in an accessible format, for example, in easy-read material or pictures. Critically, this also applies to medicines. There are now legal consequences for those who don’t comply. </p>
<p>In 2015, the Supreme Court case of <a href="https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf">Montgomery v Lanarkshire Health Board</a> redefined the law on informed consent, putting the patient at the heart of any discussion with a healthcare professional. The judgement states that all healthcare professionals are legally obliged to ensure that patients with the capacity to consent are made aware of the risks of medical treatments. Healthcare professionals who breach this duty can be sued for negligence. Yet, as our study shows, people with intellectual disability are not routinely told about their treatment or the risks it entails. </p>
<p>We found that people with intellectual disability often don’t understand when and how to take their medication, and they don’t understand the potential side effects. This is a significant problem given that <a href="https://www.ncbi.nlm.nih.gov/pubmed/17244427">75% of people with an intellectual disability</a> are prescribed drugs compared with 59% of those without intellectual disability. </p>
<p>It is important that the person who is prescribed the medicine takes it as intended by the prescriber. Taking too much or taking it too often may mean that the medicine will not work as well and can increase the risk of side effects. </p>
<p>Some of these side effects may not be immediately obvious and may only become apparent with regular medical tests. It is also essential that the patient is told how to report any issues with their medicines, which could include the medicine failing to work as expected, side effects and problems in taking the medicines, such as difficulty swallowing, which is more common in people with intellectual disabilities.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/286488/original/file-20190731-186792-vs9f5y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/286488/original/file-20190731-186792-vs9f5y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/286488/original/file-20190731-186792-vs9f5y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/286488/original/file-20190731-186792-vs9f5y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/286488/original/file-20190731-186792-vs9f5y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/286488/original/file-20190731-186792-vs9f5y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/286488/original/file-20190731-186792-vs9f5y.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">The Supreme Court redefined the law on informed consent.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/1407908072?src=MWmDDXwkATTPAiy8EIAK4A-1-49&studio=1&size=medium_jpg">Willy Barton/Shutterstock</a></span>
</figcaption>
</figure>
<h2>Reducing health inequality</h2>
<p>Some things that people with intellectual disabilities say help them to understand their medication include using simpler language, as well as pictures and videos. This helps people understand why they need to take their medication and how to use it correctly. </p>
<p>The Supreme Court decision in Montgomery specifically states that information must be given to patients in a way that they can understand. In doing so, the patient will be able to understand the seriousness of their condition, the risks of any suggested treatment or alternatives, and then provide informed consent. And it is important that healthcare professionals speak directly to the person with intellectual disabilities, not just the carer.</p>
<p>A key message of our research is to put people with intellectual disabilities at the heart of the health service – a message which is now supported by the law. Sometimes this might mean that healthcare professionals will have to spend longer explaining their medication, use different resources, and explain things in simpler language. This will help improve the lives of more then a million people in the UK with an intellectual disability and make a significant contribution to addressing the current health inequalities.</p><img src="https://counter.theconversation.com/content/119415/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Silvana Mengoni currently receives funding from the British Medical Association Foundation for Medical Research. She has previously received funding for her research projects from National Institute for Health Research, Baily Thomas Charitable Trust, CLAHRC East of England and University of Hertfordshire.</span></em></p><p class="fine-print"><em><span>Claudia Carr 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>Three-quarters of people with an intellectual disability receive prescribed drugs.Claudia Carr, Senior Lecturer in Medical Law and Ethics, University of HertfordshireSilvana Mengoni, Senior Research Fellow, University of HertfordshireLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1149872019-06-13T20:16:12Z2019-06-13T20:16:12ZChildren with autism may use memory differently. Understanding this could help us teach them<figure><img src="https://images.theconversation.com/files/279078/original/file-20190612-32351-10gkx4n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Some stereotypical behaviours of individuals with autism suggest they don’t use a certain type of memory in the same way others might.</span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/XKVOEJSnVEY">Annie Spratt/Unsplash</a></span></figcaption></figure><p>Around <a href="https://www.autismspectrum.org.au/news/autism-prevalence-rate-estimated-40-1-70-people">one in every 70 Australians</a> are on the autism spectrum. The proportion of children with autism is higher – more than 80% of all Australians on the autism spectrum are aged under 25. </p>
<p>Autism is <a href="https://www.aihw.gov.au/reports/disability/autism-in-australia/contents/autism">most prevalent</a> among school-aged children between 5 and 14. Many of these children have social, learning, communication and intellectual difficulties.</p>
<p>The high proportion of children on the autism spectrum presents an obvious challenge to teachers and the learning environment. One way they can respond to it is to examine what we know about how these children understand their world and learn.</p>
<h2>How memory works</h2>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/279269/original/file-20190613-32335-1oanbqp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/279269/original/file-20190613-32335-1oanbqp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/279269/original/file-20190613-32335-1oanbqp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=900&fit=crop&dpr=1 600w, https://images.theconversation.com/files/279269/original/file-20190613-32335-1oanbqp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=900&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/279269/original/file-20190613-32335-1oanbqp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=900&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/279269/original/file-20190613-32335-1oanbqp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1130&fit=crop&dpr=1 754w, https://images.theconversation.com/files/279269/original/file-20190613-32335-1oanbqp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1130&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/279269/original/file-20190613-32335-1oanbqp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1130&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">We use our bank of autobiographical memory to tell us how to behave in any situation.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>To understand what we suspect, so far, about the way in which some people with autism may see the world, we need to examine how we use our <a href="https://www.ncbi.nlm.nih.gov/pubmed/15193941">autobiographical episodic memory</a> – the bank of experiences we have stored in memory.</p>
<p>This bank of experiences tells us how to behave in any situation. It tells us what we did in past, matching situations, where and when events happened, how we felt at the time and how we coped. These are the time-and-place images of our life history.</p>
<p>We use this memory bank to interpret new situations. The memories help us decide how to act socially or functionally, to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3561727/">imagine how someone might feel</a> and what to expect in the future. They help us transfer our behaviours to new situations and adjust how we behave and think based on the context.</p>
<p>We <a href="http://cogprints.org/636/1/KnowledgeMemory_SchankAbelson_d.html">seem to do these things implicitly</a>. We don’t need to plan consciously how we will act in most new situations. In other words, we modify or adapt our stored experiences automatically to fit the situation in which we find ourselves at any time.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/were-capable-of-infinite-memory-but-where-in-the-brain-is-it-stored-and-what-parts-help-retrieve-it-63386">We're capable of infinite memory, but where in the brain is it stored, and what parts help retrieve it?</a>
</strong>
</em>
</p>
<hr>
<h2>Theories on autism</h2>
<p>The stereotypical behaviours of individuals with autism suggest they don’t use their bank of experiences spontaneously and automatically in these ways. </p>
<p>Emerging research supports this possibility. It suggests people on the autism spectrum could be <a href="https://www.frontiersin.org/articles/10.3389/fnhum.2011.00077/full">less likely to reflect</a> on specific experiences, infer from them or recognise regularities in them. </p>
<p>This would then lead to difficulty modifying stored experiences to use later to interpret other everyday situations.</p>
<p>Instead, they may <a href="https://www.psychologytoday.com/us/blog/beautiful-minds/201003/can-people-autism-learn-implicitly">learn experiences and store them</a> in a more fixed way. </p>
<p>People on the autism spectrum, depending on where on the spectrum they are, can have difficulty adapting what they have learnt to changes in context. They may find it harder to predict, anticipate or think flexibly and switch how they will act. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/279282/original/file-20190613-32373-ma9fzt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/279282/original/file-20190613-32373-ma9fzt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/279282/original/file-20190613-32373-ma9fzt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/279282/original/file-20190613-32373-ma9fzt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/279282/original/file-20190613-32373-ma9fzt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/279282/original/file-20190613-32373-ma9fzt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/279282/original/file-20190613-32373-ma9fzt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/279282/original/file-20190613-32373-ma9fzt.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">Children on the autism spectrum may find it harder to predict, anticipate or think flexibly and switch how they will act.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/VLOVJl_mLCA">Photo by Limor Zellermayer on Unsplash</a></span>
</figcaption>
</figure>
<p>At the same time they may be able to <a href="https://www.spectrumnews.org/opinion/powerful-memory-system-may-compensate-for-autisms-deficits/">learn and recall facts</a> and relationships that are specific, precise and rigid – such as associations between names, symbols and meanings.</p>
<p>Rigidly stored experiences limit the <a href="https://www.ncbi.nlm.nih.gov/pubmed/16835247/">ability to learn</a> and to deal with dynamic social situations. So, people who store memories in this way may be more likely to overreact emotionally and show attention difficulties.</p>
<p>They might also <a href="https://www.ncbi.nlm.nih.gov/pubmed/16835247/">have difficulty linking</a> their experiential knowledge with language. Everyday living, the classroom and the workplace use language as a major vehicle for learning and interacting.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/young-children-with-autism-can-thrive-in-mainstream-childcare-104936">Young children with autism can thrive in mainstream childcare</a>
</strong>
</em>
</p>
<hr>
<h2>How teaching could address this</h2>
<p>Episodic memory is <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0107761">stimulated when you are exposed</a> to visual information. People with autism <a href="https://www.ncbi.nlm.nih.gov/pubmed/20740492">sometimes perform better</a> when given visual tasks. </p>
<p>One way to possibly stimulate episodic memory could be through the use of video-based instruction (VBI). This is where videos are used to demonstrate new knowledge and skills in particular contexts. </p>
<p>One review looked at <a href="https://link.springer.com/article/10.1007/s40489-016-0098-5">36 studies that investigated</a> whether video-based instruction helped children with autism gain social skills. It showed students with autism could more easily learn functional skills and transfer and generalise them. </p>
<p>The videos may help participants recall past similar experiences, say what they did and how they coped, and decide how they would act in unfamiliar situations.</p>
<p>Narrative therapy has also <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/jcap.12020">been shown to help</a> people with autism deal with social and emotional issues. This therapy is based on imaginary real-life situations. </p>
<p>The children are taught to actively analyse an everyday episode and to build alternative stories around it, with themselves as a protagonist. They learn to visualise the situation and imagine it changing. </p>
<p>Many students with autism often <a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/pits.21994">have difficulty</a> with reading comprehension. Some research shows teaching <a href="https://www.nichd.nih.gov/sites/default/files/publications/pubs/nrp/Documents/report.pdf">visualisation strategies</a> to reading underachievers generally enhances reading comprehension.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/279284/original/file-20190613-32373-1wz3fdn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/279284/original/file-20190613-32373-1wz3fdn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/279284/original/file-20190613-32373-1wz3fdn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=480&fit=crop&dpr=1 600w, https://images.theconversation.com/files/279284/original/file-20190613-32373-1wz3fdn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=480&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/279284/original/file-20190613-32373-1wz3fdn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=480&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/279284/original/file-20190613-32373-1wz3fdn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=603&fit=crop&dpr=1 754w, https://images.theconversation.com/files/279284/original/file-20190613-32373-1wz3fdn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=603&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/279284/original/file-20190613-32373-1wz3fdn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=603&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Visualisation strategies can trigger a child’s imagination.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>This directly target’s a child’s ability to imagine. While reading a narrative, for example, a child is told to note how particular characters are feeling and predict what they might do next, as well as to imagine how others might be feeling.</p>
<p>Visualising scaffolds someone’s episodic memory to form virtual experiences of the text being read and to infer in a range of ways about it. This could <a href="https://www.researchgate.net/publication/304032716_Reading_comprehension_intervention_for_high-functioning_children_with_autism_spectrum_disorders">also help students</a> with autism. They are taught explicitly to create mental images of what they read, <a href="http://www.readingrockets.org/article/reading-comprehension-and-autism-primajry-general-education-classroom">comprehension strategies</a> and also to self-regulate and summarise.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-to-identify-understand-and-teach-gifted-children-107718">How to identify, understand and teach gifted children</a>
</strong>
</em>
</p>
<hr>
<p>This type of reading intervention for students with autism has been shown to <a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/aur.1503">improve links between</a> the verbal and imagery areas of the brain.</p>
<p>Our knowledge of how individuals with autism spectrum disorder know and learn has increased exponentially over the last two decades. Teachers can use some of this knowledge in the classroom, and governments can use some of the emerging evidence to develop programs to help children with autism learn.</p><img src="https://counter.theconversation.com/content/114987/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>John Munro 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 understand what we suspect, so far, about the way in which some people with autism may see the world, we need to examine how we use the bank of experiences we have stored in memory.John Munro, Professor, Faculty of Education and Arts, Australian Catholic UniversityLicensed 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>
<hr>
<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>
<hr>
<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>
</strong>
</em>
</p>
<hr>
<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">
<figcaption>
<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>
</figcaption>
</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>
<hr>
<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>
</strong>
</em>
</p>
<hr>
<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>
</figcaption>
</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>
</strong>
</em>
</p>
<hr>
<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/979212018-10-03T20:04:37Z2018-10-03T20:04:37ZHow to improve the NDIS for people who have an intellectual disability as well as a mental illness<figure><img src="https://images.theconversation.com/files/238868/original/file-20181002-85611-12drwhl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People with mental illness as well as an intellectual disability find it harder to receive sufficient NDIS supports.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p><em>The National Disability Insurance Scheme (NDIS) began a <a href="https://theconversation.com/au/topics/understanding-the-ndis-28996">full national rollout</a> in July, 2016 with a fundamental principle to give those with a disability choice and control over their daily lives. Participants can use funds to purchase services that reflect their lifestyle and aspirations. <a href="https://theconversation.com/au/topics/ndis-two-years-on-60287">Two years on</a>, how is the scheme faring?</em></p>
<hr>
<p>Full implementation of the National Disability Insurance Scheme (NDIS) started two years ago, but <a href="https://socialequity.unimelb.edu.au/__data/assets/pdf_file/0008/2598497/Choice-Control-and-the-NDIS.pdf">many people with disability are not receiving</a> the support they need. One such group are <a href="https://www.dss.gov.au/disability-and-carers/programs-services/for-people-with-disability/national-disability-insurance-scheme/ndis-evaluation-consolidated-report">people with complex support needs</a>, such as people with intellectual disability who also have mental health needs. </p>
<p>Fewer people with complex needs are receiving the NDIS, and those who are using it have worse outcomes than others. Some can’t receive support because the scheme hasn’t yet reached where they live. Others may receive funding, but not be able to use it if there aren’t services in their local area. Others receive NDIS support but the promise of greater choice and control over their support has not yet happened.</p>
<h2>What the evidence says</h2>
<p>An NDIS package allows people with significant and ongoing disability needs to purchase support. The aim is for people to make their own decisions about the support they need so they can achieve the same things as others in their community.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-ndis-is-delivering-reasonable-and-necessary-supports-for-some-but-others-are-missing-out-97922">The NDIS is delivering 'reasonable and necessary' supports for some, but others are missing out</a>
</strong>
</em>
</p>
<hr>
<p>An independent <a href="https://www.dss.gov.au/disability-and-carers/programs-services/for-people-with-disability/national-disability-insurance-scheme/ndis-evaluation-consolidated-report">evaluation</a> of the NDIS conducted by researchers from Flinders University found one-third of NDIS participants couldn’t find the disability support they needed because of a <a href="https://www.dss.gov.au/disability-and-carers/programs-services/for-people-with-disability/national-disability-insurance-scheme/ndis-evaluation-consolidated-report">lack of local</a> providers and a lack of quality services. This shortage of suitable services is worse for people with complex needs.</p>
<p>People with intellectual disability experience higher rates of mental ill health than the rest of the population, although the data on <a href="https://www.tandfonline.com/doi/full/10.1080/19315864.2017.1408724">exact rates vary</a> depending on the context. Mental illness refers to conditions including depression and anxiety, as well as psychotic disorders, such as schizophrenia.</p>
<p>While the <a href="https://www.ndis.gov.au/about-us/information-publications-and-reports/quarterly-reports">number of NDIS providers</a> has nearly doubled since June 2017, this increase also signals a new workforce who need training to support people to get the services they need. </p>
<iframe src="https://datawrapper.dwcdn.net/2UsxS/1/" scrolling="no" frameborder="0" allowtransparency="true" width="100%" height="376"></iframe>
<p>This is especially so when consumers’ needs cross over between the NDIS and other sectors, such as mental health. The NDIS pays for <a href="https://trove.nla.gov.au/work/229883809?selectedversion=NBD61517205">some mental health support</a>, but state and federal governments are responsible for the rest, and shortfalls are common.</p>
<p>People with intellectual disability find it <a href="https://www.tandfonline.com/doi/abs/10.1080/19315864.2017.1408724">much harder to access</a> mental health support and often don’t receive satisfactory or appropriate treatment. The design and delivery of mental health services and health policy often <a href="http://journals.sagepub.com/doi/abs/10.1177/0004867418773882">overlooks the specific needs</a> of people with intellectual disability. These can include needing extra time to build rapport and trust with service employees, using accessible language and working collaboratively with other services.</p>
<p>People with intellectual disability say many barriers stop them from getting the mental health and disability services they need. These can include living in locations that lack services. They can also be influenced by the way the NDIS and other services are organised. For instance, separating disability from other health services can mean people’s treatment is not coordinated, which can lead to poorer outcomes.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/understanding-the-ndis-a-history-of-disability-welfare-from-deserving-poor-to-consumers-in-control-58069">Understanding the NDIS: a history of disability welfare from 'deserving poor' to consumers in control</a>
</strong>
</em>
</p>
<hr>
<h2>Barriers to access</h2>
<p><a href="https://trove.nla.gov.au/work/229883809?selectedversion=NBD61517205">Only a small number</a> of NDIS and other services are available for many people with intellectual disability who need mental health support. The shortage of mental health services, especially in rural and regional Australia, affects the general population too. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/238874/original/file-20181002-85617-spk0t6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/238874/original/file-20181002-85617-spk0t6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/238874/original/file-20181002-85617-spk0t6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/238874/original/file-20181002-85617-spk0t6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/238874/original/file-20181002-85617-spk0t6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/238874/original/file-20181002-85617-spk0t6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/238874/original/file-20181002-85617-spk0t6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/238874/original/file-20181002-85617-spk0t6.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">People with intellectual disability often experience discrimination.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>But the lack of accessible services is worse for people with intellectual disability. People speak about <a href="https://trove.nla.gov.au/work/229883809?selectedversion=NBD61517205">exhausting all the services</a> in their area and being unable to travel a long way to get to a suitable service.</p>
<p>Attitudes also prevent people with intellectual disability and mental health receiving the few services that are available. People have shared stories about being <a href="https://trove.nla.gov.au/work/229883809?selectedversion=NBD61517205">excluded from services</a> because of their intellectual disability or their mental health. </p>
<p>For instance, one parent told researchers that when the person they cared for tried to use a public mental health service, they were refused once the staff found out the person had an intellectual disability.</p>
<p>Staff in mental health services often <a href="https://www.tandfonline.com/doi/abs/10.1080/19315864.2018.1469700">do not have sufficient training</a> on how to deal with intellectual disability. Similarly, staff in disability services do not have enough training about mental health. People’s mental health needs are <a href="https://researchers.mq.edu.au/en/publications/preparedness-and-training-needs-of-an-australian-public-mental-he">often mis-identified</a>, dismissed or not treated well even when they are identified.</p>
<p>In interviews, NDIS <a href="https://trove.nla.gov.au/work/229883809?selectedversion=NBD6151720&q&versionId=252808053">participants have told</a> about times when their behaviours were unusual for them and a clear indication they were in mental distress, yet mental health staff dismissed the behaviour as part of their disability. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/five-years-on-ndis-is-getting-young-people-out-of-aged-care-but-all-too-slowly-97851">Five years on, NDIS is getting young people out of aged care, but all too slowly</a>
</strong>
</em>
</p>
<hr>
<h2>Positive experiences</h2>
<p>Some people with both intellectual disability and mental health needs <a href="https://www.tandfonline.com/doi/abs/10.1080/19315864.2018.1469700">have had positive experiences</a> with the NDIS. These experiences show us what is needed to make access to services easier for people with complex needs. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/239065/original/file-20181003-691-124oksq.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/239065/original/file-20181003-691-124oksq.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/239065/original/file-20181003-691-124oksq.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=276&fit=crop&dpr=1 600w, https://images.theconversation.com/files/239065/original/file-20181003-691-124oksq.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=276&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/239065/original/file-20181003-691-124oksq.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=276&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/239065/original/file-20181003-691-124oksq.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=346&fit=crop&dpr=1 754w, https://images.theconversation.com/files/239065/original/file-20181003-691-124oksq.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=346&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/239065/original/file-20181003-691-124oksq.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=346&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">We know what we need to do to make the NDIS experience equally satisfactory for everyone.</span>
<span class="attribution"><span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>One of them is having a good advocate – a family, friend, formal advocate or service provider. It is important for service providers to listen to the advocate, especially when they know about the person’s ordinary behaviour and can identify when something is wrong. </p>
<p>Collaboration between the person and service is also important, as well as between mental health and disability services. </p>
<p>The NDIS has good examples of how to find the right services for people with complex needs. Support planners who have good communication and interpersonal skills <a href="https://www.tandfonline.com/doi/abs/10.3109/13668250.2016.1151864?src=recsys&journalCode=cjid20">can advocate for people</a> and <a href="https://www.researchgate.net/publication/313915878_Collings_S_Dew_A_Dowse_L_2017_They_need_to_be_able_to_have_walked_in_our_shoes_What_people_with_intellectual_disability_say_about_National_Disability_Insurance_Scheme_planning_Journal_of_Intellectual_">encourage self advocacy</a>. </p>
<p>Some planners have disability themselves or have training from people with disability. People who have strong advocates <a href="https://www.dss.gov.au/disability-and-carers/programs-services/for-people-with-disability/national-disability-insurance-scheme/ndis-evaluation-consolidated-report">have better outcomes</a> in the NDIS so far.</p>
<p>The NDIS is striving to fulfil the rights of people with complex needs to benefit from the new services available through the scheme. Investing in specific training is crucial for planners, services, carers and people with intellectual disability.</p><img src="https://counter.theconversation.com/content/97921/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Karen R Fisher receives funding from NHMRC. She is a member of Neami Research Committee. </span></em></p><p class="fine-print"><em><span>Erin Louise Whittle receives an Australian Government Research Training Program Scholarship.</span></em></p><p class="fine-print"><em><span>Julian Trollor receives funding from a variety of sources including the National Health and Medical Research Council, the New South Wales Government, and the Cooperative Research Centre for Living with Autism. He is a member of the Australian Association of Disability Medicine, and advocates for improvements in healthcare for people with intellectual disability as a member of the Council for Intellectual Disability. </span></em></p>People with intellectual disability experience higher rates of mental ill health than the rest of the population, so NDIS can be doubly relevant.Karen R Fisher, Professor, Social Policy Research Centre, UNSW SydneyErin Louise Whittle, PhD Candidate, UNSW SydneyJulian N. Trollor, Professor, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/988202018-09-28T10:34:40Z2018-09-28T10:34:40ZTrusting states to do right by special education students is a mistake<figure><img src="https://images.theconversation.com/files/238399/original/file-20180927-48644-1lng236.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many special education students are isolated from their peers.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/raised-hands-class-middle-school-607559540">hxdbzxy/www.shutterstock.com</a></span></figcaption></figure><p>On Sept. 20, the U.S. Department of Education released a <a href="https://www2.ed.gov/about/offices/list/osers/framework/osers-framework-9-20-2018.pdf">new framework</a> to “rethink” how the department oversees special education services for students with disabilities. </p>
<p>As part of this framework, the department plans to provide states with “flexibility” and to “acknowledge” that states are “in the best position to determine implementation of their programs.”</p>
<p>This flexibility relates to how states satisfy the provisions in the <a href="http://uscode.house.gov/view.xhtml?path=/prelim@title20/chapter33/subchapter2&edition=prelim">Individuals with Disabilities Education Act</a> – a federal civil rights law known as IDEA meant to ensure all students with disabilities receive a free and appropriate education.</p>
<p>In my opinion, the assumption that states are in the best position to determine implementation of their programs related to the IDEA law is a faulty one. So is the notion that relaxing enforcement of these provisions would have a positive impact on students.</p>
<p>I make these arguments as a <a href="https://scholar.google.com/citations?user=sHPQcU8AAAAJ&hl=en&oi=ao">researcher</a> who focuses on the best ways to serve students with intellectual disability and make sure such students are included in the general classroom to the greatest extent possible.</p>
<p>The Education Department’s plan to give states more flexibility is in line with the Trump administration’s broader view that the Education Department has too much power and that its role <a href="https://www.ed.gov/news/press-releases/statement-secretary-devos-government-reform-plan">should be reduced</a>. </p>
<p>In my view, the administration is wrong to single out IDEA as an example of federal overreach. In reality, IDEA is an example of how the federal government works at its best to ensure the rights of America’s most vulnerable citizens. Without it, the nation’s special education system would not exist. </p>
<h2>Evidence of positive effects</h2>
<p><a href="https://www.gpo.gov/fdsys/pkg/STATUTE-89/pdf/STATUTE-89-Pg773.pdf">The Education For All Handicapped Children Act</a> – the predecessor to IDEA – was passed in 1975. This followed <a href="http://journals.sagepub.com/doi/pdf/10.1177/074193250102200602">an outcry by parents of children with disabilities and advocacy groups</a> about how <a href="http://journals.sagepub.com/doi/pdf/10.1177/074193250102200602">nearly 2 million students</a>
with disabilities were not receiving educational services at all, and an additional 3 million were receiving educational services that weren’t appropriate for their needs.</p>
<p>The law’s passage was neither partisan nor controversial. In fact, it passed both houses of Congress with <a href="https://voteview.com/rollcall/RH0940531">overwhelming bipartisan support</a>.</p>
<p>Overall, implementation of IDEA has <a href="http://journals.sagepub.com/doi/pdf/10.1177/074193250102200602">had a hugely positive impact</a> on the lives of children and youth with disabilities. It has ensured that all children and youth with disabilities receive an education, and it has provided parents and the students themselves with a strong voice in designing Individualized Education Programs. However, this does not mean that all of the provisions of IDEA have been fully realized. Nor does it mean that it is time to relax federal oversight.</p>
<p>State implementation of some key IDEA provisions has been mixed. This underscores the critical need for continued and vigilant federal oversight.</p>
<h2>Segregation is common</h2>
<p>One particularly troubling example of how implementation of IDEA has fallen short relates to segregating students with disabilities in separate classrooms and schools.</p>
<p>A key provision of IDEA is that all students with disabilities should have <a href="http://uscode.house.gov/view.xhtml?path=/prelim@title20/chapter33&edition=prelim">meaningful opportunities</a> to learn alongside their peers in general education classrooms. This is called inclusion. Inclusion is the best way for these students to <a href="http://journals.sagepub.com/doi/abs/10.2511/rpsd.33.4.175">gain critical social and communication skills</a>, and to learn the same important academic material that is taught to all students. Furthermore, students with disabilities are held to higher expectations when they are included in general education classrooms, and students often rise – or sink – to <a href="https://www.sciencedirect.com/science/article/pii/S0022440507000416">teacher expectations</a>. In addition, peers benefit by getting the opportunity to know someone they would not have otherwise met, increasing their <a href="http://journals.sagepub.com/doi/abs/10.1177/074193259902000209">acceptance of individual differences</a>. More broadly, inclusive classrooms contribute to building a more inclusive society.</p>
<p>The law does not require all students to be included all of the time. Rather, it calls for schools to take an inclusion-first approach, treating the general education classroom as the default placement. Students are only supposed to be placed in specialized settings when there is a compelling reason. For example, it might be appropriate for a middle school student who struggles with literacy to receive intensive instruction on basic reading skills in a special education classroom, or for a high school student to spend part of the day at a community job internship that is consistent with her career goals.</p>
<p>Despite this federal mandate, there is little evidence that most schools are embracing an inclusion-first approach. A <a href="http://aaiddjournals.org/doi/abs/10.1352/1944-7558-123.4.305">recent analysis</a> of federal data shows that most students with intellectual disability spend most of their school day outside of the general education classroom. Only 17 percent spend at least four-fifths of the day in a general education classroom.</p>
<p>Perhaps even more troubling is the lack of progress toward more inclusive placements over time. Although there was some movement toward more inclusive placements in the 1990s, placement rates have remained mostly unchanged since 1997. In the last two years for which data are available – 2013 and 2014 – schools actually became a <a href="https://doi.org/10.1352/1944-7558-123.4.305">little less inclusive.</a></p>
<h2>Room for improvement</h2>
<p>Could progress have stagnated because schools have reached the upper limit of what is possible? There are a number of reasons why this is not the case.</p>
<p>First, educators have the tools to do better. Researchers have made significant strides in developing practices that promote effective inclusion for students with intellectual disability. There is solid evidence that practices such as <a href="http://journals.sagepub.com/doi/abs/10.1177/0022466917708184">peer support arrangements</a> and <a href="https://www.jstor.org/stable/23880070?seq=1#page_scan_tab_contents">embedded instruction</a> enable students with intellectual disabilities to thrive academically and socially in general education classrooms. Peer support arrangements involve peers without disabilities providing academic and social support to students with disabilities in general education classrooms. Embedded instruction involves providing individualized instruction in the context of classroom routines. </p>
<p>Second, some schools have already demonstrated that it is possible to do much better. Entire states like Vermont and Iowa include most students with intellectual disability for the majority of the school day. And there are individual school districts that boast inclusion rates <a href="http://journals.sagepub.com/doi/abs/10.1177/1540796915591988">four times better than the national average.</a></p>
<p>The bottom line is that there is no good reason why schools cannot or should not be more inclusive. The problem is not a lack of strategies or successful models. The problem is a <a href="http://journals.sagepub.com/doi/pdf/10.1177/1540796914555580">stubborn insistence on an outdated segregation-first approach</a> that is both ethically and legally problematic. This problem is not perpetuated by any malicious intent, but instead by systemic factors that encourage the status quo. For example, once large urban school districts invest in building a separate school to serve students with severe disabilities, they are <a href="https://doi.org/10.1177/1540796915591988">less likely to consider serving a student at a regular neighborhood school.</a> Similarly, if a school has always served students with intellectual disability in a separate classroom, they are likely to continue to default to this placement option until parents and advocates push for change.</p>
<p>The U.S. Department of Education has an obligation to enforce IDEA provisions. The department must also ensure that inclusion is no longer a privilege afforded only to the fortunate few who live in a particular state or school district. All students with disabilities deserve the opportunity to benefit from inclusion. Similarly, all peers without disabilities deserve the opportunity to experience interactions with people who are different from themselves.</p><img src="https://counter.theconversation.com/content/98820/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Matthew Brock receives funding from the U.S. Department of Education, Institute of Education Sciences.</span></em></p>Things could get worse for special education students if the Trump administration follows through on its plans to give states more leeway when it comes to how they treat special education students.Matthew Brock, Assistant Professor of Special Education, The Ohio State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/959422018-05-22T20:11:38Z2018-05-22T20:11:38ZIt’s time to stop exposing people to the dangers of Facilitated Communication<figure><img src="https://images.theconversation.com/files/219880/original/file-20180522-51141-10lozja.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Facilitated Communication began in Australia in the 1980s.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/120718087?src=MSJiGgym2GLm0FBVwA-N7w-1-20&size=huge_jpg">Shutterstock</a></span></figcaption></figure><p>Anna Stubblefield, an ex-Rutgers University Professor of Philosophy, was convicted in 2015 of the rape of an intellectually and physically disabled man after falsely obtaining his consent for sex via a technique known as Facilitated Communication (FC). </p>
<p>Stubblefield was <a href="https://www.nytimes.com/2018/04/05/magazine/the-strange-case-of-anna-stubblefield-revisited.html">originally sentenced for 12 years</a>, but recently her conviction was overturned on appeal. After pleading guilty to reduced charges, Stubblefield was <a href="https://www.nytimes.com/aponline/2018/05/11/us/ap-us-disabled-man-sexual-consent.html">sentenced this month</a> to time served, lifetime parole supervision and placement on a sex offender registry.</p>
<p>While this strange story might seem unique, it is just the latest that we know of in a long history of adverse events related to the use of FC. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-count-what-matters-and-violence-against-people-with-disability-matters-51320">We count what matters, and violence against people with disability matters</a>
</strong>
</em>
</p>
<hr>
<h2>How is FC meant to work?</h2>
<p>FC, also called <a href="https://en.wikipedia.org/wiki/Facilitated_communication">supported typing</a>, is a technique in which a person called a “facilitator” provides physical support to a person with a disability in an attempt to help them point to pictures, printed letters or words on an <a href="http://soe.syr.edu/centers_institutes/institute_communication_inclusion/what_is_supported_typing/Examples.aspx">alphabet board or keyboard</a>. </p>
<p>Typically, the “facilitator” holds or touches the person’s hand, arm, back, or other part of the person’s body during typing. This is supposedly “stabilising” support, meant to allow the person with a disability to use slight movements. </p>
<p>However, FC is <a href="https://www.tandfonline.com/doi/abs/10.1080/17489539.2014.976332">pseudoscientific</a>, and its use is <a href="https://www.youtube.com/watch?v=1j0TAaDWrxU">unethical</a>. Controlled tests of FC in research and in legal cases have shown that the facilitator is, even subconsciously, authoring the person’s message. </p>
<h2>How did FC become widespread?</h2>
<p>FC was initially a local phenomenon in Australia in the 1980s. It might have stayed that way, but Dr Douglas Biklen of Syracuse University embraced it, promoted it in the <a href="http://hepgjournals.org/doi/10.17763/haer.60.3.013h5022862vu732?code=hepg-site">Harvard Educational Review</a>, and created the “Facilitated Communication Institute” (recently re-named the <a href="http://soe.syr.edu/centers_institutes/institute_communication_inclusion/default.aspx">Institute for Communication and Inclusion</a>). </p>
<p>FC came to be vigorously <a href="https://www.tandfonline.com/doi/abs/10.1080/17489539.2015.1023988?scroll=top&needAccess=true&journalCode=tebc20">promoted</a> and presented at international <a href="https://www.isaac-online.org/english/what-is-aac/">Augmentative and Alternative Communication</a> conferences.</p>
<p>A form of <a href="https://www.youtube.com/watch?v=UaNWyQvbMLU">automatic writing</a>, FC gives the false impression that the disabled person is doing the typing. Despite anecdotal reports that it works, a simple “blinded” picture naming test is all it takes to reveal the true author. In such a test, the facilitator is not aware of the answers to questions asked of the person with disability. Over 30 studies of this type have found <a href="https://www.tandfonline.com/doi/full/10.3109/07434618.2014.971490">no convincing evidence</a> that messages delivered using FC are authored by the person with a disability. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/science-debunks-fad-autism-theories-but-that-doesnt-dissuade-believers-38270">Science debunks fad autism theories, but that doesn't dissuade believers</a>
</strong>
</em>
</p>
<hr>
<p>There are several other communication technologies and strategies now available to enable a person with a disability to get their message across. These <a href="https://ilcaustralia.org.au/search_category_paths/226">technologies are called Augmentative and Alternative Communication</a> and include a variety of switches that people can use if they have difficulty using their hands. </p>
<h2>What harm can it do?</h2>
<p>There’s a long history of harms relating to FC, and it makes the news for all the wrong reasons. US businesswoman Gigi Jordan was sentenced to 18 years in prison for the <a href="https://www.nytimes.com/2015/05/29/nyregion/gigi-jordan-receives-18-year-sentence-for-killing-her-son.html">murder of her son with autism</a> on the basis of a message delivered <a href="https://edition.cnn.com/2014/11/05/justice/new-york-autistic-death-trial/index.html">using FC</a>. </p>
<p>Apart from FC being a clear violation of the disabled person’s <a href="https://www.tandfonline.com/doi/pdf/10.1080/17489539.2014.1001549">communication rights</a>, FC related criminal cases often involve family members being falsely accused of sexual abuse. Jose Cordero of Florida is the most recent <a href="http://www.miamiherald.com/news/local/crime/article204034704.html">innocent person known to be imprisoned</a> as a result of <a href="https://www.tandfonline.com/doi/abs/10.1080/17489539.2012.674680?journalCode=tebc20">false allegations of sexual abuse</a> delivered via FC. His name can be <a href="https://abcnews.go.com/Health/wendrows-sex-abuse-cases-dismissed-facilitated-communication/story?id=15274276">added to a growing list</a> that includes the Wheatons, Julian Wendrow, and <a href="https://www.nytimes.com/1994/02/12/nyregion/shattering-silence-autism-new-communication-method-hailed-miracle-derided.html">Mark and Laura Storch</a>. The Wendrows <a href="https://www.freep.com/story/news/local/michigan/oakland/2014/11/06/jury-awards-wendrow-millions-oakland/18611789/">won more than US$6 million in law suits</a>.</p>
<p>It’s not possible to know how many more people with disabilities who use FC are currently being abused sexually through falsely giving consent to sex, but we do know of one other case similar to Stubblefield’s. In Australia in 2014, Martina Susanne Schweiger, a disability support worker <a href="https://www.sunshinecoastdaily.com.au/news/carer-i-fell-in-love/2422827/">received a suspended jail sentence</a> for indecent dealings with a person with an impairment, brought about as a result of the messages delivered by FC. </p>
<h2>Five good reasons to ‘keep your hands off’ FC</h2>
<ol>
<li><p>FC is not a valid form of communication. It gives only the illusion of communication and denies people with disabilities access to their human rights of <a href="http://www.un.org/en/universal-declaration-human-rights/">autonomy, self-determination, and freedom of expression</a>. </p></li>
<li><p>FC can mask the true nature, identity, and character of the disabled person. </p></li>
<li><p>FC is a pseudoscientific technique that comes with the risk of inflicting great harms on disabled people, family members, and teachers through false allegations of sexual abuse, false consent for sex, or other crimes. Several professional associations worldwide have <a href="https://www.tandfonline.com/doi/full/10.3109/07434618.2014.971492?src=recsys">warned against its use</a>. </p></li>
<li><p>FC can also harm the facilitator. The discovery that it is the facilitator who is doing the typing <a href="https://www.tandfonline.com/doi/abs/10.1080/17489539.2012.674680?journalCode=tebc20">can be devastating and confusing</a>. Like Stubblefield and Jordan, any facilitator could be imprisoned for acting upon wrongful decisions made on the basis of using FC. </p></li>
<li><p>FC costs families of persons with disabilities valuable money and time and removes opportunities for them to access appropriate treatments that work, including <a href="https://www.tandfonline.com/doi/abs/10.1080/07434618.2016.1267795">Augmentative and Alternative Communication</a> and <a href="https://www.annualreviews.org/doi/10.1146/annurev.clinpsy.121208.131151">Applied Behaviour Analysis</a>. </p></li>
</ol>
<h2>A right to communicate</h2>
<p>People with communication disability <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-21-freedom-of-expression-and-opinion-and-access-to-information.html">have a right to communicate</a> using any means that enables their freedom of expression. They also have a right to <a href="https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-16-freedom-from-exploitation-violence-and-abuse.html">freedom from abuse</a>. </p>
<p>We live in a time of extraordinary technological advancements, where people like <a href="https://theconversation.com/the-technology-that-gave-stephen-hawking-a-voice-should-be-accessible-to-all-who-need-it-93418">Stephen Hawking</a> are able to independently control computers to communicate. It is unnecessary to use facilitator-dependent techniques that have no merit and that are <a href="https://theconversation.com/science-debunks-fad-autism-theories-but-that-doesnt-dissuade-believers-38270">genuinely considered junk science</a>. </p>
<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>
</strong>
</em>
</p>
<hr>
<p>In order to counter the myths of FC, it’s important to that <a href="http://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4430.0Main%20Features872015?opendocument&tabname=Summary&prodno=4430.0&issue=2015&num=&view=">people with communication disability</a>, parents, professionals and disability organisations have appropriate access to <a href="https://www.emc-lab.org/uploads/1/1/3/6/113627673/trembath.2016.ebcai.pdf">evidence-based interventions</a>. Closing the significant <a href="https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Speech_Pathology/Report">service gaps</a> for people with communication disability – who need access to <a href="https://www.rcslt.org/about/campaigns/bercow_review">appropriately trained professionals</a> – might be part of the solution to avoiding the harms of FC and replacing FC with treatments that work.</p><img src="https://counter.theconversation.com/content/95942/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 of Australia, and the International Society for Augmentative and Alternative Communication (ISAAC) in the form of an honorarium for the role of Editor in Chief of the journal 'Augmentative and Alternative Communication'. Bronwyn is also on the research committee of ISAAC.</span></em></p><p class="fine-print"><em><span>Howard Shane was an expert for the prosecution in both the Wendrow and Stubblefield cases. His testimony in both cases was focused on his evaluation of the victims of sexual abuse.</span></em></p><p class="fine-print"><em><span>James T Todd is affiliated with Eastern Michigan University. He has consulted for several criminal and civil cases involving Facilitated Communication and related techniques. He was a defendant's expert witness in Wendrow's criminal case and plaintiff's witness in the civil phase. He was an expert for the Prosecution in the Stubblefield assault case in New Jersey describing the scientific evidence against the validity of facilitated communication. </span></em></p><p class="fine-print"><em><span>Ralf Schlosser receives an honorarium for being Editor of Evidence-Based Assessment and Intervention</span></em></p><p class="fine-print"><em><span>Russell Lang receives funding from Texas Higher Education Coordinating Board's Autism Grant Program. </span></em></p>Facilitated Communication began in Australia in the 1980s to help people with disabilities communicate, but it has since been shown to replace the voice of the person with that of the facilitator.Bronwyn Hemsley, Professor of Speech Pathology, University of Technology SydneyHoward Shane, Associate Professor at Harvard Medical School and Director of the Center for Communication Enhancement at Boston Children's Hospital, Harvard UniversityJames T Todd, Professor of Psychology, Eastern Michigan UniversityRalf Schlosser, Professor, Northeastern UniversityRussell Lang, Associate professor, Texas State UniversityLicensed as Creative Commons – attribution, no derivatives.