tag:theconversation.com,2011:/us/topics/disability-services-19827/articlesDisability services – The Conversation2023-04-18T23:24:54Ztag:theconversation.com,2011:article/2040412023-04-18T23:24:54Z2023-04-18T23:24:54ZThe NDIS is set for a reboot but we also need to reform disability services outside the scheme<p>NDIS Minister Bill Shorten yesterday announced a “reboot” of Australia’s National Disability Insurance Scheme and six major areas of reform. Getting the NDIS back on track, Shorten said, will require reform across all disability services.</p>
<p>It’s a difficult time to announce an NDIS reboot. The federal budget is weeks away and, in the context of a cost-of-living crisis, some argue NDIS costs need to be reined in.</p>
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<p>At the same time, two major pieces of work are underway and due to report later this year: the <a href="https://disability.royalcommission.gov.au/">royal commission</a> into violence, abuse, neglect and exploitation of people with disability; and the <a href="https://www.ndisreview.gov.au/">independent review</a> of the NDIS exploring how it can be made sustainable over the long term. </p>
<p>Shorten has continuously said any changes to the scheme need to be guided by people with disability, meaning it would make it difficult to make announcements about substantive changes ahead of the review reporting.</p>
<p>So what do we know so far, and what are the key challenges to overcome?</p>
<h2>Tackling bed block</h2>
<p>Since Labor came to government last year, the government has made a number of changes to the scheme, including decreasing delays to NDIS participants being discharged from hospital. </p>
<p>Delayed discharge means a person is medically fit to be discharged from hospital but they cannot return home safely as appropriate supports are not in place. </p>
<p>In his speech to the National Press Club yesterday, <a href="https://ministers.dss.gov.au/speeches/10911">Shorten explained</a> that last year, NDIS participants in Victoria waited, on average, 160 days after they were medically fit to be discharged from hospital. </p>
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<a href="https://theconversation.com/ndis-participants-are-left-waiting-for-too-long-in-hospital-beds-due-to-bureaucratic-delays-188439">NDIS participants are left waiting for too long in hospital beds due to bureaucratic delays</a>
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<p>After significant action from the National Disability Insurance Agency (NDIA), this fell to a 29-day average wait to be discharged. This is a better outcome for the people involved and is estimated to have saved the health system A$550 million.</p>
<p>This shows the NDIS does not exist in a vacuum. How the NDIS operates has implications for the costs of mainstream services such as health and education – and, conversely, how mainstream services operate has implications for the NDIS and its costs.</p>
<h2>6 ways to reboot the NDIS</h2>
<p>The government will focus on six areas for reform to ensure the NDIS is fit for purpose, which won’t come as a surprise to those familiar with the scheme. </p>
<p>Very little detail has been announced about these reforms and in many cases we will need to wait for the independent review to report and outline precisely how these will be achieved.</p>
<p><strong>1) Increase the size of the NDIA workforce</strong>, make sure staff are appropriately trained and the agency has the technology and capacity to do its work.</p>
<p><strong>2) Move participants to longer plans</strong>, where appropriate, rather than needing a new plan every year. This will give participants more certainty and allow them to focus on making their current plans work.</p>
<p><strong>3) Make sure all money is spent effectively</strong>. This means not spending on “shoddy therapies” and ensuring supports are evidence-based and benefits are maximised for participants.</p>
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<p><strong>4) Review supported independent living services.</strong> Around $10 billion of NDIS funding goes into these services each year and supports around 30,000 people with significant disabilities to live independently. Yet too often, they don’t support participants and families in the ways that they want. The Royal Commission has also heard significant abuse and neglect occurs in these settings.</p>
<p><strong>5) Target misuse of NDIS funds</strong>. This involves targeting <a href="https://theconversation.com/ndis-fraud-reports-reveal-the-schemes-weakest-points-188746">fraud</a> within the scheme, but also unethical practices by some providers who overcharge for services or pressure people into spending money on services that they may not want or need.</p>
<p><strong>6) Increase community and mainstream supports</strong> so people who aren’t eligible for the NDIS can access other services. This isn’t focused on the NDIS but the services that sit around it. </p>
<p>These six areas target many of the areas that are in need of reform within the scheme and some have already seen some initial reform attempts. The real question is how these will be delivered and whether there is genuine commitment to co-design with people with disability around these areas. </p>
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Read more:
<a href="https://theconversation.com/everyone-is-talking-about-the-ndis-we-spoke-to-participants-and-asked-them-how-to-fix-it-193524">Everyone is talking about the NDIS – we spoke to participants and asked them how to fix it</a>
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<h2>More to disability care than the NDIS</h2>
<p>The NDIS was never designed to be accessed by all people with disability. The initial scheme design supported participants via a tiered system: </p>
<ul>
<li><p>Tier 2 was for all Australians with disability and their carers by providing information and referrals to relevant services outside the NDIS (for example, mainstream services such as health and education). This tier also aimed to link people with disability into their local communities. </p></li>
<li><p>Tier 3 was designed for people with disability who have significant and permanent impairments. It provides access to specialised disability supports funded directly by the scheme and allocated via individual budgets.</p></li>
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<p>While much of the attention on the scheme is around Tier 3 supports, a major driver of costs is a lack of investment in Tier 2 services. If we do not see adequate investment in mainstream and community services, such as in health and education, people with disability are <a href="https://percapita.org.au/wp-content/uploads/2023/03/NDIS_-_Not_a_one_stop_shop-FINALv2-flattened.pdf">more likely to require Tier 3 services</a>. </p>
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<p>The NDIS has been called the “oasis in the desert” where people need to get services and supports through the scheme because there is a lack of other mainstream supports available. Research shows <a href="https://library.bsl.org.au/bsljspui/bitstream/1/13113/1/Olney_etal_Tier2_tipping_point_support_without_individual_NDIS_funding_2022.pdf">90%</a> of disabled Australians who didn’t have NDIS funding and took part in the research were unable to access the services and supports they needed.</p>
<p>We have seen particular growth in the <a href="https://onlinelibrary.wiley.com/doi/10.5694/mja2.51899">number of young people</a> with autism and developmental delay entering the NDIS, far beyond what was originally projected at scheme design. <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">One in ten boys</a> aged between five and seven have an NDIS plan when starting school. </p>
<p>While this could indicate the original scheme estimates were not correct, it’s likely that a significant proportion of demand for scheme entry is being driven by a lack of other available supports through mainstream services.</p>
<p>The government seems committed to disability services reform but it won’t be quick or easy. It will involve more than just changes to the NDIS – we need a rethink of all disability services. And this can’t be done without people with disability who need to play a strong role in designing this new scheme. </p>
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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>
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<p class="fine-print"><em><span>Helen Dickinson receives funding from ARC, NHMRC and CYDA.</span></em></p>If people with disability can’t access the NDIS, they’re often left without any services or supports. This needs to change.Helen Dickinson, Professor, Public Service Research, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1913142022-10-17T12:31:45Z2022-10-17T12:31:45ZPandemic shut down many special education services – how parents can help their kids catch up<figure><img src="https://images.theconversation.com/files/489038/original/file-20221010-11-iyxyn.jpg?ixlib=rb-1.1.0&rect=12%2C0%2C4037%2C2659&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">In-person school resumed earlier in Boston for special education students than for those without special needs.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/teachers-and-students-walk-to-the-entrance-at-the-mattahunt-news-photo/1230127391">David L. Ryan/The Boston Globe via Getty Images</a></span></figcaption></figure><p>When schools shut down in March 2020, many of the nation’s <a href="https://nces.ed.gov/programs/coe/indicator/cgg/students-with-disabilities">roughly 7 million</a> students in special education <a href="https://heinonline.org/HOL/LandingPage?handle=hein.journals/scws30&div=6&id=&page=">didn’t get</a> <a href="https://co.chalkbeat.org/2022/5/6/23060189/denver-public-schools-special-education-compensatory-services">the special education services</a> to which <a href="https://www.npr.org/2020/07/23/893450709/families-of-children-with-special-needs-are-suing-in-several-states-heres-why/">they were entitled</a> under federal law. The law requires these services to be provided <a href="https://www.ed.gov/news/press-releases/new-guidance-reaffirms-importance-full-implementation-individuals-disabilities-education-act-amidst-covid-19-pandemic">even during special circumstances</a>, <a href="https://www.nytimes.com/2020/04/28/us/politics/coronavirus-devos-special-education.html">such as the pandemic</a>.</p>
<p>School districts may have fallen short of providing special education services to eligible students with disabilities during the pandemic. For example, the Los Angeles Unified Public School District has been cited by the U.S. Department of Education for <a href="https://www2.ed.gov/about/offices/list/ocr/docs/investigations/more/09215901-a.pdf">failing to provide appropriate special education services</a> to students with disabilities during the pandemic. As a result, the district will have to provide, and pay for, services to make up for what wasn’t provided.</p>
<p>More broadly, the U.S. Department of Education says special education students who missed out on services <a href="https://www2.ed.gov/about/offices/list/ocr/docs/factsheet-504.html">are likely eligible</a> to get <a href="https://www.usnews.com/education/k12/articles/how-to-get-compensatory-education-for-your-child">additional services</a> meant to make up for what they missed.</p>
<p>But even though most of the nation’s schools have resumed in-person classes, they have <a href="https://www.bu.edu/articles/2022/special-education-teacher-shortage/">had trouble getting enough staff</a> to provide all the services that are needed.</p>
<p>As a <a href="https://scholar.google.com/citations?user=jzgDyzMAAAAJ&hl=en&oi=ao">scholar of special education</a>, I have some insights on how parents and students can get the services they are entitled to receive, how to make the most of those resources and what to do if they feel that schools are failing to deliver.</p>
<h2>How did all this start?</h2>
<p>As recently as the early 1970s, many states allowed school districts to <a href="https://theconversation.com/how-children-with-disabilities-came-to-be-accepted-in-public-schools-50820">exclude students with disabilities</a> from school entirely, or to put them in separate classrooms from students without disabilities.</p>
<p>In courts and legislatures across the country, <a href="https://theconversation.com/decades-after-special-education-law-and-key-ruling-updates-still-languish-181560">parents fought for their children’s educational rights</a> – and won.</p>
<p>In 1975, Congress passed and President Gerald Ford signed the <a href="https://www.congress.gov/bill/94th-congress/house-bill/7217">Education for All Handicapped Children Act</a>. Sen. Harrison Williams, the bill’s chief sponsor, declared, “It is time for Congress to … <a href="https://www.congress.gov/bound-congressional-record/1975/06/18/senate-section">provide to all handicapped children their right to education</a>.” In 1990, the act was renamed the <a href="https://sites.ed.gov/idea/">Individuals with Disabilities Education Act</a> and is now commonly known as IDEA.</p>
<h2>What are students entitled to?</h2>
<p>The law requires that all students with disabilities be provided with what is called a “<a href="https://www2.ed.gov/about/offices/list/ocr/frontpage/pro-students/issues/dis-issue03.html">free appropriate public education</a>,” one specifically developed to meet their individual educational needs.</p>
<p>Congress requires school districts to work with parents of students with disabilities to develop an <a href="https://www2.ed.gov/parents/needs/speced/iepguide/index.html">individualized education program</a> specifying the exact assistance and accommodations each student needs. For instance, a student with a disability that makes reading difficult for them may receive an hour a day of specialized reading instruction. These IEPs are legal documents, and <a href="https://sites.ed.gov/idea/about-idea/">schools are obligated</a> to provide those services.</p>
<p>The law also <a href="https://sites.ed.gov/idea/about-idea/">provides funding to help states pay</a> the additional costs of providing those supports.</p>
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<a href="https://images.theconversation.com/files/489039/original/file-20221010-15-pf2t20.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="People sit around a table and look at papers together" src="https://images.theconversation.com/files/489039/original/file-20221010-15-pf2t20.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/489039/original/file-20221010-15-pf2t20.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/489039/original/file-20221010-15-pf2t20.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/489039/original/file-20221010-15-pf2t20.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/489039/original/file-20221010-15-pf2t20.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/489039/original/file-20221010-15-pf2t20.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/489039/original/file-20221010-15-pf2t20.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>
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<span class="caption">A mother, second from left, meets with school staff to plan her child’s individualized education program.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/ana-watson-talks-with-stephanie-slusser-a-significant-news-photo/460552640">Joe Amon/The Denver Post via Getty Images</a></span>
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<h2>What can parents do to ensure their kids get what they need?</h2>
<p>Congress intended that parents be involved in the development and implementation of their child’s special education program. </p>
<p>The law requires parental consent for any testing or other evaluation that may help determine what a student’s needs are or what interventions might help them. In addition, school district personnel must involve the student’s <a href="https://sites.ed.gov/idea/regs/b/d/300.322">parents as full, equal partners</a> when developing the IEP. And schools can’t set up or change a student’s placement or special education programs without notifying parents and getting their agreement.</p>
<p>Parents can learn more about their roles and responsibilities – as well as what rights they and their children have and how to protect those rights – from their state’s <a href="https://www.parentcenterhub.org/find-your-center/">Parent Training and Information Center</a>. Those centers also teach students self-advocacy skills they need to lead independent and productive lives.</p>
<h2>What if the school and parents don’t agree?</h2>
<p>If parents don’t agree with a school’s evaluation of their child, they can file a complaint with their state’s education department. </p>
<p>They can also request that the school district pay for an independent educational evaluation of their child. The school can claim its evaluation is appropriate, and the dispute can be resolved by an <a href="https://sites.ed.gov/idea/regs/b/e/300.511">impartial hearing officer</a>. I serve as a state review due process hearing officer for the state of South Carolina. A hearing officer’s decisions can be appealed into the state or federal court systems.</p>
<h2>What if everyone agrees, but the school still doesn’t provide the services?</h2>
<p>Parents can complain to the state education department if a school district does not follow through with an agreed-upon IEP. </p>
<p>If a school district does not implement an IEP as agreed upon, a student’s parents may also file a complaint with the state education department or request a due process hearing. If either results in a finding that there was an implementation error committed by the school district, the district may be required to fix the problem. Districts can also be required to pay a parent’s attorneys’ fees, provide compensatory services, or even reimburse the parents for tuition if they had to place the student in a private school to get the services needed.</p><img src="https://counter.theconversation.com/content/191314/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mitchell Yell is on the board of directors for the Council for Exceptional Children, a not-for-profit group for teachers, parents, and professionals working with students with disabilities.</span></em></p>The US Department of Education says special education students who missed out on services during the pandemic are likely eligible for additional help to make up for what was lost.Mitchell Yell, Professor of Educational Studies, University of South CarolinaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1659082021-08-17T14:37:39Z2021-08-17T14:37:39ZLife with vision loss: South Africans explain what they need from rehabilitation<figure><img src="https://images.theconversation.com/files/416065/original/file-20210813-18-5rii8s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Guide dog leading visually impaired man across the road.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>South African census data from 2011 estimate a disabled population <a href="http://www.statssa.gov.za/?p=3180">of 7.5%</a>. The census approaches disability as levels of difficulty in six areas – seeing, hearing, communicating, remembering or concentrating, walking and self-care. According to this data, about 1.7% of South Africans experience severe visual difficulty. </p>
<p>The definition of legal blindness includes an array of conditions and levels of <a href="https://pubmed.ncbi.nlm.nih.gov/16539747/">visual difficulty</a>. Essentially, a blind person will not be able to see at 3 metres what a sighted person could see at <a href="https://ajod.org/index.php/ajod/article/view/136">60 metres</a>.</p>
<p>South Africa has 22 special schools for the blind, but a 2015 <a href="https://section27.org.za/2015/11/left-in-the-dark/">report</a> revealed that they are short of resources and the standard of education offered to visually impaired learners is low. As a result, entrance into tertiary education is <a href="https://www.researchgate.net/publication/312612286_The_lived_experiences_of_higher_education_for_students_with_a_visual_impairment_a_phenomenological_study_at_two_universities_in_the_Western_Cape_South_AfricaEnter_title">low</a>.</p>
<p>It is estimated that 97% of visually impaired South Africans are <a href="https://ajod.org/index.php/ajod/article/view/136">unemployed</a>.</p>
<p>Another challenge is the cultural beliefs that people encounter. These beliefs connect blindness to ideas about fear, ignorance, incapability and dependence. Negative ideas influence the way that society interacts with blind people. </p>
<p>This may be the experience of people who lose their sight gradually. The majority of visual impairment in South Africa results from preventable or treatable conditions. These include glaucoma and cataracts, which cause gradual vision loss if not <a href="https://avehjournal.org/index.php/aveh/article/view/239">correctly treated</a>. </p>
<p>When people begin to lose their sight they might well lose their job and be isolated from other <a href="https://play.google.com/books/reader?id=xnn1BwAAQBAJ&pg=GBS.PA144&lr=&printsec=frontcover">people</a>.</p>
<p>Rehabilitation services play an important role, providing essential skills for adjusting to life with visual impairment. These skills include white cane mobility training, coping with daily living (such as cooking and household management), computer literacy with assistive software and Braille literacy. Rehabilitation services may also include courses in life skills, office administration and work readiness.</p>
<p>This practical training is certainly important. But my PhD <a href="https://open.uct.ac.za/handle/11427/33440">research</a> found that rehabilitation services for visually impaired adults need to focus more on identity and building a positive sense of self and belonging. People who experience sight loss are likely to have been exposed to negative ideas about the status and capabilities of blind people, and they may have experienced discrimination and exclusion. They have to deal with not only the practical implications of vision loss but a sense of what it might mean <a href="https://www.degruyter.com/document/doi/10.3138/9781442681781/html">for their future</a>.</p>
<h2>Better rehabilitation</h2>
<p>I conducted in-depth interviews with people who used and offered rehabilitation services. The users were adults who had experienced vision loss later in life. The service providers included occupational therapists, social workers and training facilitators.</p>
<p>I found that rehabilitation services that focus on the practical challenges of visual impairment do not adequately support individuals who may be experiencing significant trauma. Service users’ accounts also suggested that undergoing rehabilitation could further destabilise their sense of self and belonging. One participant said: </p>
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<p>The way they treated adults was really taking something from them.</p>
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<p>Others expressed their feelings about the type of support they needed: </p>
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<p>You need to not just learn how to cook and learn how to read Braille and learn how to walk with a cane, you need to be given the tools to live a well-rounded, mentally well life.</p>
<p>I’ve just been on a mission of trying to find a way for me to sustain myself and also for me to move forward and to develop.</p>
</blockquote>
<p>The way in which rehabilitation services are approached may unintentionally strengthen a negative view of blind people. Service user accounts describe an imbalance of power in rehabilitation organisations, where they felt as though they were not able to exercise choice. They often felt they were not valued as stakeholders in rehabilitation and that they were not able to choose how to move forward in their lives.</p>
<p>In South Africa, rehabilitation services operate as charities funded in part by government but relying increasingly on donations from the corporate sector and <a href="https://journals.co.za/doi/abs/10.10520/ejc-healthr-v2020-n1-a20">the public</a>. This can also be damaging to service users’ sense of self as they become viewed as recipients of goodwill rather than as active participants in a process of skills development.</p>
<h2>Sense of empowerment</h2>
<p>To make rehabilitation more holistic, it is important to consider what is being imparted to visually impaired people about who they are. These ideas will be carried forward into their lives. To be empowered citizens, they need more than special skills and assistive devices. They need a positive sense of themselves as valuable, whole people who are able to contribute and participate in their families and communities.</p>
<p>To address the identified gaps in rehabilitation services for visually impaired adults, the training of rehabilitation workers must include greater emphasis on the internal negotiations of self and place. </p>
<p>In addition, rehabilitation service users must be viewed as central stakeholders in their own processes of rehabilitation, and empowered to make their own decisions.</p><img src="https://counter.theconversation.com/content/165908/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The research was conducted at the Division of Disability Studies, UCT; I am currently affiliated to the Institute for Life Course Health Research at Stellenbosch University.
The research was funded by the National Research Foundation and the Ian Fraser Memorial Bursary Fund.
I volunteer for the Western Cape Network on Disability.
</span></em></p>People who lose their sight have to deal with not only the practical implications but their sense of identity.Michelle Botha, Postdoctoral Research Fellow Institute for Life Course Health Research , Stellenbosch UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1579592021-04-15T04:15:33Z2021-04-15T04:15:33ZFloods can worsen inequality. Here are 4 ways we can ensure people with disabilities aren’t left behind<figure><img src="https://images.theconversation.com/files/393694/original/file-20210407-21-18wl388.jpg?ixlib=rb-1.1.0&rect=0%2C26%2C5900%2C3895&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>Disasters like flooding can worsen social inequalities around health and housing. For people with disability, however, the effect can be especially profound. </p>
<p><a href="https://ucrh.edu.au/wp-content/uploads/2020/07/Final-Submission-to-the-Royal-Commission_UCRH.pdf">Research</a> led by the University of Sydney’s University Centre for Rural Health has <a href="https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7501-y">shown</a>, for example, that after flooding people with disability and their carers were more likely than others to: </p>
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<li><p>have their homes flooded and be evacuated</p></li>
<li><p>still be displaced six months on</p></li>
<li><p>experience disrupted access to food, support networks and essentials such as healthcare and social services</p></li>
<li><p>continue to be distressed about the flood six months after it happened</p></li>
<li><p>be at relatively high risk of post-traumatic stress disorder six months after the flood.</p></li>
</ul>
<p>As communities on Australia’s east coast recover from recent flooding, it’s more important than ever to engage with <a href="https://disability.royalcommission.gov.au/system/files/2021-03/Issues%20paper%20-%20Overview%20of%20responses%20to%20the%20Emergency%20planning%20and%20response%20issues%20paper.pdf">concerns</a> raised at the recent <a href="https://disability.royalcommission.gov.au/system/files/2020-07/Issues%20paper%20-%20Emergency%20Planning%20and%20Response.pdf">Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability</a>. </p>
<p>As revealed in the University Centre for Rural Health’s <a href="https://disability.royalcommission.gov.au/system/files/2020-12/ISS.001.00259.pdf">submission</a> to the Royal Commission, people with disability are too often overlooked or left behind during emergencies.</p>
<p>We surveyed people with disability and carers after a major flood in the Northern Rivers region of New South Wales in 2017. Some of the stories were shocking. One person told us:</p>
<blockquote>
<p>Me and my housemate are disabled […] We were unable to leave our house as we had no transport to get to the evacuation centre. </p>
</blockquote>
<p>Another identified barriers with communication, saying:</p>
<blockquote>
<p>Didn’t know what evacuation meant eg what to take, would I have to stay there, where to go […] Had no idea what river levels meant, eg Tweed River is 4.3m.</p>
</blockquote>
<p>People with disability reported feeling they had been left to “fend for themselves”:</p>
<blockquote>
<p>The disgusting way people were left to fend for themselves and then the lack of proper response from our federal government. The scammers who surfaced during the flood. The lack of help for the homeless and vulnerable. The anxiety and stress that occurred and the amount of people left homeless and still trying to find a home five months later. Services that were desperately needed but were very hard to find.</p>
</blockquote>
<p>Carers are affected, too. One told us:</p>
<blockquote>
<p>I didn’t realise how depressed I got or how upset I was until I talked with the flood recovery team and then it all hit home and has taken six to 12 [months] to recover and I was only minimally affected.</p>
</blockquote>
<p>Respondents described people with disability living in places that should never have been rented in the first place due to flood risk:</p>
<blockquote>
<p>It would have been impossible to get possessions to safety quick enough. And people who rent these type of places have the least resources (mental emotional physical (cars etc), financial) to cope.</p>
</blockquote>
<p>One carer described her harrowing flood experience by saying:</p>
<blockquote>
<p>I got no warning but TV said evacuation for Lismore CBD, and when I rang SES for information I could not get through. I needed clarification for my family and I have three special needs kids and I needed help to evacuate. I rang the police station [and] they said I was fine where I was. I was getting more scared and finally got hold of [the] SES who told me leave now as “we expect catastrophic loss and genuine risk that your house will collapse because it’s in direct path of flood when the levy tops”. I said I need help! I was told no help for me as I was under order to evacuate hours before but no one rang, no one knocked on my door! Even the police said my house was fine! It was completely destroyed. Knocked off the pylons, condemned [to] a horrific night of hell getting the kids out by myself.</p>
</blockquote>
<p>A common experience was people with disability or carers feeling like their expertise and insights were ignored. </p>
<p>Change is urgently needed. Here are four things that could be done to ensure <a href="https://disability.royalcommission.gov.au/system/files/2021-03/Issues%20paper%20-%20Overview%20of%20responses%20to%20the%20Emergency%20planning%20and%20response%20issues%20paper.pdf">purposeful inclusion</a> of people with disability and carers in all stages of recovery. </p>
<h2>1. Work with peak (and local) disability advocacy organisations</h2>
<p>When disaster strikes, people with disability need emergency housing in the short-term and more secure housing in the long-term. </p>
<p>Our <a href="https://disability.royalcommission.gov.au/system/files/2020-12/ISS.001.00259.pdf">research</a> highlighted a lack of affordable accommodation for displaced carers and people living with disability. People were living in unsafe accommodation with mould, no cooking facilities and structural damage. Some were left homeless.</p>
<p>It is vital all levels of government work with peak (and local) disability advocacy organisations to understand and respond to disaster-related housing vulnerabilities.</p>
<p>People living with disability should be supported to plan for disaster risk. This should include programs to help people learn about their flood risk and what to do in an evacuation. </p>
<h2>2. Ensure continuity of support and services</h2>
<p>Disaster recovery plans should consider how, for people with disability, access to support and services can be disrupted by long-term displacement.</p>
<p>Disruption to support networks can leave people with disability isolated. Access to high-quality personal care, transport, food and health services must be continued during and after a flood. </p>
<p>The <a href="https://collaborating4inclusion.org/wp-content/uploads/2019/11/DIDRR_Framework_document_FINAL.pdf">Disability-Inclusive and Disaster Risk Reduction Framework and Toolkit</a> provides direction to service providers to ensure the safety of staff — and the people they support — before, during, and after a disaster.</p>
<h2>3. Make long-term investments in mental health and well-being</h2>
<p>Floods can have enduring psychological impacts. For people with disability, however, the risk of <a href="https://disability.royalcommission.gov.au/system/files/2020-12/ISS.001.00259.pdf">prolonged distress</a> and post traumatic risk disorder is higher.</p>
<p>Mental health conditions may take some time to emerge. Longer-term tailored supports are required - possibly for years after the flood. </p>
<p>Mental health services should be evidence-based, with additional training for primary care providers on how to identify and treat post-traumatic stress disorder. </p>
<p><a href="https://www.mdpi.com/1660-4601/17/20/7676/htm">Research</a> has shown shown being connected to your community, for example through volunteering, clubs or informal gatherings, can reduce the risk of mental health issues after a disaster.</p>
<h2>4. Develop person-centred preparedness plans</h2>
<p>Too often, people living with disability are not adequately included in community-level disaster preparedness. Governments at all levels — but especially councils — must invest in helping people prepare <a href="https://www.sciencedirect.com/science/article/pii/S2212420920314813">personal emergency plans</a>.</p>
<p>The Australian-designed <a href="https://collaborating4inclusion.org/wp-content/uploads/2020/08/2020-08-19-Person-Centred-Emergency-Preparedness-P-CEP-WORKBOOK_FINAL.pdf">Person-Centred Emergency Preparedness Workbook</a> is a guide used by people with disability to tailor emergency preparedness planning to their needs. </p>
<p>It steps people through the planning process and includes tips from people with disability help to get the conversation started.</p>
<p>Emergency services also need to be well supported, and nobody should lay the blame on any particular agency. These organisations, many of which rely on volunteers, are doing the best they can in extremely challenging circumstances. But there is an opportunity here for broader systemic change to better meet the needs of disaster-affected people with disability and their carers.</p>
<p>The severity and frequency of flooding is likely to increase as the climate warms. So too will the human impacts. We urgently need to find ways to improve how we prepare and respond.</p>
<hr>
<p><em>If this article has raised issues for you, or if you’re concerned about someone
you know, call Lifeline on 13 11 14. This story is part of a series The Conversation is running on the nexus between disaster, disadvantage and resilience. It is supported by a philanthropic grant from the Paul Ramsay foundation. You can read the rest of the stories <a href="https://theconversation.com/au/topics/disaster-and-resilience-series-97537">here</a>.</em></p><img src="https://counter.theconversation.com/content/157959/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jodie Bailie is a Research Affiliate with the NHMRC Centre for Research Excellence in Disability and Health, and receives funding from a University of Sydney Postgraduate Award. The flood research we have drawn upon was led by The University of Sydney, The University Centre for Rural Health. It was funded by The University of Sydney, Western Sydney University, University of Wollongong, Northern NSW Local Health District and the NSW Office of Environment and Heritage. Funders played no direct role in designing the study and writing for publication. This study would not have been possible without the support of the NSW Northern Rivers community who responded to the Community Recovery after Flood survey, nor without the active support, enthusiasm and commitment of the Community Advisory Groups in Lismore and Murwillumbah and community organisations.</span></em></p><p class="fine-print"><em><span>Jo Longman receives funding from the NSW Department of Planning, Industry and Environment. </span></em></p><p class="fine-print"><em><span>Michelle Villeneuve receives funding from the Australian Research Council Linkage Program, the Queensland Government through the Queensland Disaster Resilience Fund and Department of Communities, Housing and the Digital Economy, the Victorian Government Department of Families, Fairness and Housing, and Resilience NSW. This funding supports research on Disability Inclusive Disaster Risk Reduction (DIDRR) policy and practice development in Australia. </span></em></p><p class="fine-print"><em><span>Ross Bailie receives funding from the National Health and Medical Research Council and the Australian Research Council for public health research. </span></em></p><p class="fine-print"><em><span>Veronica Matthews receives funding from the National Health and Medical Research Council and the Australian Research Council supporting health systems research focused on Aboriginal and Torres Strait Islander wellbeing. </span></em></p>We surveyed people with disability and carers after a major flood in the Northern Rivers area of New South Wales area. Some of the stories were shocking.Jodie Bailie, Research Fellow, The University Centre for Rural Health, University of SydneyJo Longman, Senior Research Fellow, The University Centre for Rural Health, University of SydneyMichelle Villeneuve, Associate Professor, University of SydneyRoss Bailie, Professor/Director, The University Centre for Rural Health, University of SydneyVeronica Matthews, Senior Research Fellow, The University Centre for Rural Health, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1572832021-03-23T19:10:03Z2021-03-23T19:10:03ZLiving with a disability is very expensive – even with government assistance<figure><img src="https://images.theconversation.com/files/390937/original/file-20210322-23-qsxssl.jpg?ixlib=rb-1.1.0&rect=8%2C0%2C5682%2C3797&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People with disabilities may need larger cars or specially modified ones to be able to get themselves around.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/young-disabled-woman-holding-wheelchair-by-car-on-royalty-free-image/1207327237">Maskot/DigitalVision via Getty Images</a></span></figcaption></figure><p>Edward Mitchell is 34 years old and lives in Jackson, Tennessee, with a spinal cord injury caused by a hit-and-run accident that happened when he was 17. He has plenty of expenses that all Americans have, like groceries and utilities. But to maintain his independence, he also has to pay for home modifications to accommodate his wheelchair, personal nursing care, dictation tools to help him write and adjustments to his car so he can drive himself to work. </p>
<p>He is just one of the <a href="https://www.disabilitystatistics.org/reports/acs.cfm?statistic=1">20 million working-age adults</a> living with disabilities in the U.S., for whom it takes more money to make ends meet because of the additional expenses they face every day. </p>
<p>In a recent working paper published with the National Disability Institute, a nonprofit organization that works to build a better financial future for people with disabilities and their families, we estimated the amount of <a href="https://www.nationaldisabilityinstitute.org/reports/extra-costs-living-with-disability/">extra costs associated with living with a disability for Americans ages 18 to 69 years old</a>. </p>
<p>Using data from four nationally representative surveys, we found that adults with disabilities require, on average, 28% more income to achieve an identical standard of living as a household of the same size and income where no one has disabilities – and that’s on top of what is already covered and provided by government programs offering disability benefits. At the median U.S. income level, that amounts to an <a href="https://www.nationaldisabilityinstitute.org/reports/extra-costs-living-with-disability/">additional US$17,690 per year</a>. </p>
<p>Each person’s exact costs are likely to vary depending on which disabilities they have and what specific expenses they face. </p>
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<h2>Why this matters for how we measure poverty</h2>
<p>For people like Edward, it takes more income to achieve the same standard of living as a person without a disability. Yet, the <a href="https://aspe.hhs.gov/poverty-guidelines">federal poverty guidelines</a> do not take these additional costs into account. This is important because these guidelines are used to determine financial eligibility for many social welfare programs. </p>
<p>Treating his income as the same as a person without a disability ignores the fact that a significant percentage of his earnings are devoted to expenses related to his disability.</p>
<p>We estimate that, if the federal poverty guidelines took into account these extra costs, as many as 2.2 million more people with disabilities would be counted as poor and become eligible for programs like health care and food assistance that people depend on for their basic needs. </p>
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<h2>What could be done?</h2>
<p>There is ample precedent for adjusting income figures when determining whether a family is below, at or above the federal poverty level. This is automatic, for instance, based on family size: Larger families can <a href="https://aspe.hhs.gov/2019-poverty-guidelines">earn more money than smaller ones</a>, and still remain eligible for various benefits. </p>
<p>It objectively <a href="https://fns-prod.azureedge.net/sites/default/files/crc2015_March2017.pdf">costs more</a> to raise a family of four than a family of three. The same is true for people with disabilities. Income eligibility guidelines for programs such as housing assistance and medical insurance – all of which are already adjusted for family size – could also be adjusted to compensate for the extra costs of disability. </p>
<p>Such an adjustment would be in line with current <a href="https://www.nationaldisabilityinstitute.org/wp-content/uploads/2020/10/extra-costs-living-with-disability-brief.pdf">U.S. policies that already recognize these extra costs</a>. For example, to receive <a href="https://www.cbpp.org/research/food-assistance/a-quick-guide-to-snap-eligibility-and-benefits">food assistance</a>, a household of three cannot earn more than $2,353 a month and cannot have cash assets greater than $2,250. However, if the household has a member with a disability, the household can have assets up to $3,500. </p>
<p>Another option would be to create a disability living allowance program that helps cover the unavoidable costs of living with a disability. At present, U.S. disability support programs only provide benefits if the person can prove that they are <a href="https://www.ssa.gov/disability/professionals/bluebook/general-info.htm">unable to work for a year or longer</a>. This means that millions of people with disabilities who can work are provided no support for their extra costs of living. </p>
<p>In the U.K., by contrast, the <a href="https://www.gov.uk/pip">Personal Independence Program</a> provides cash benefits to help adults with the extra costs of living with a disability – regardless of whether they are able to work. That program and others in <a href="https://www.forsakringskassan.se/english/disability">Sweden</a>, <a href="https://www.workandincome.govt.nz/products/a-z-benefits/disability-allowance.html">New Zealand</a> and <a href="https://www.social-protection.org/gimi/RessourcePDF.action?id=56925">Fiji</a> help people with disabilities find, keep and build economic security in ways the U.S. does not.</p><img src="https://counter.theconversation.com/content/157283/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The research for the article was funded by the FINRA Investor Education Foundation. </span></em></p><p class="fine-print"><em><span>The research for this article was funded by the FINRA Investor Education Foundation</span></em></p>A household earning the US median income needs an additional $17,690 per year – on top of current government disability benefits programs.Zachary Morris, Assistant Professor of Social Welfare, Stony Brook University (The State University of New York)Nanette Goodman, Director of Research, Burton Blatt Institute, Syracuse UniversityStephen McGarity, Assistant Professor of Social Work, University of TennesseeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1535402021-02-08T16:32:44Z2021-02-08T16:32:44ZA dangerous path: Why expanding access to medical assistance in dying keeps us up at night<figure><img src="https://images.theconversation.com/files/382707/original/file-20210205-14-1nfo1ub.jpg?ixlib=rb-1.1.0&rect=105%2C6%2C4016%2C2725&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Minister of Justice David Lametti gives a thumbs up as he rises to vote in favour of a motion on Bill C-7, medical assistance in dying, in the House of Commons on Dec. 10, 2020. </span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Justin Tang</span></span></figcaption></figure><p>When a government starts making laws based on the premise that some lives are not worth living, it is setting out on an extremely dangerous path. </p>
<p>That is the path that <a href="https://www.justice.gc.ca/eng/csj-sjc/pl/charter-charte/c7.html">Bill C-7, the proposed law to expand access to Medical Assistance in Dying</a> (MAID) to people whose death is not imminent, sets Canada on.</p>
<p>This is what keeps us — two MDs and a PhD on wheels — up at night. We each have a different perspective on the dangers of expanding MAID eligibility to people who are not dying. </p>
<p>Bill C-7 was <a href="https://www.cbc.ca/news/politics/maid-commons-senate-c7-1.5836319">passed in the House of Commons in December</a>, and is proceeding to the senate in February.</p>
<h2>Health ethics: Careening down a slippery slope</h2>
<p><em>Heidi Janz is an ethics professor at the University of Alberta, and chair of the Council of Canadians with Disabilities’ Ending-of-Life Ethics Committee</em></p>
<p>I describe myself as a long-hauler in the struggle against the legalization of assisted suicide and euthanasia for people with disabilities.</p>
<p>What first activated me was the <a href="https://www.researchgate.net/publication/317816777_DISABLING_IMAGES_AND_THE_DANGERS_OF_PUBLIC_PERCEPTION_A_COMMENTARY_ON_THE_MEDIA%27S_COVERAGE_OF_THE_LATIMER_CASE">unqualified media and public support that Robert Latimer received in 1993 when he was charged with killing his daughter, Tracy, who had cerebral palsy</a>. I remember watching a news magazine show on the topic <em>When is it right to kill someone with severe disabilities?</em> and realizing that most Canadians would consider my life not worth living.</p>
<p>The Latimer case revealed the prevalence of <a href="https://doi.org/10.1057/dev.2008.17">ableism</a> in Canada and marked the start of the slippery slope down which our country is careening. </p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/liks62ZcMK0?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Dr. Heidi Janz’s testimony before the House of Commons Justice Committee studying Bill C-7.</span></figcaption>
</figure>
<p>As a professor of health ethics who has disabilities, I worry about the effect that the expansion of MAID under Bill C-7 will have on kids and youth with disabilities. <a href="http://dx.doi.org/10.1108/S1479-363620170000010007">I attended a school for kids with disabilities</a>. Roughly half the students had muscular dystrophy, and a life expectancy of 14-18 years. Growing up, we all knew that some of us would live longer than others. But we also knew that all of us would live with the best quality of life possible, until we died.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/think-disability-is-a-tragedy-we-pity-you-82047">Think disability is a tragedy? We pity you</a>
</strong>
</em>
</p>
<hr>
<p>What keeps me up at night is knowing that this is not the message the current generation of kids with disabilities is getting. Instead, they’re hearing about <a href="https://globalnews.ca/news/3826108/assisted-death-canada-children/">parents requesting MAID for their disabled kids</a>.</p>
<p>I hope that Canadians with disabilities can find safe doctors who will fight for our lives, instead of encouraging us to end our lives.</p>
<h2>Palliative care: Healing vs. hastening death</h2>
<p><em>Leonie Herx is past president of the Canadian Society of Palliative Care Physicians and chair of the Division of Palliative Medicine at Queen’s University</em></p>
<p>As a palliative care physician, I was drawn into the “assisted dying” debate when the <a href="https://www.justice.gc.ca/eng/cj-jp/ad-am/scc-csc.html">Supreme Court of Canada</a> struck down the <a href="https://www.cbc.ca/news/politics/supreme-court-says-yes-to-doctor-assisted-suicide-in-specific-cases-1.2947487">prohibition against assisted suicide in the 2015 Carter decision</a>.</p>
<p>After the Carter ruling, there was a lot of <a href="https://doi.org/10.1093/annonc/mdp048">erroneous talk about how palliative care already hastens death</a>, and an expectation that palliative physicians would therefore take on this life-ending procedure as part of our practice. Our speciality has spent a lot of time helping people understand that hastening death or intentionally ending life violates the <a href="https://www.cspcp.ca/wp-content/uploads/2019/11/CHPCA-and-CSPCP-Statement-on-HPC-and-MAiD-Final.pdf">core principles and</a> internationally recognized <a href="https://www.cspcp.ca/wp-content/uploads/2019/11/CHPCA-and-CSPCP-Statement-on-HPC-and-MAiD-Final.pdf">definition of palliative care</a>.</p>
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<figcaption><span class="caption">Dr. Leonie Herx’s testimony before the House of Commons Justice Committee studying Bill C-7.</span></figcaption>
</figure>
<p>One of my concerns is that physicians would be expected to raise MAID as if it were like any other medical option, when it is not. For a doctor to say, “Well, you could choose this drug, or these supports to help you, or you could choose death,” would be suggesting to someone that their life isn’t worth living.</p>
<p>As a physician, my job is to restore hope and promote healing. It’s not to suggest death as the answer to suffering and to facilitate ending someone’s life.</p>
<p>Bill C-7 is based on a very narrow view of autonomy and <a href="https://www.canada.ca/en/health-canada/services/medical-assistance-dying-annual-report-2019.html#a3.2">people who want to have control over their own death via an assisted suicide make up a very small percentage of the population, around two per cent</a>. Legislative protections need to be put in place to prevent people from being pressured into MAID and doctors from being forced to facilitate it.</p>
<h2>Family medicine: Support for the vulnerable</h2>
<p><em>Ramona Coelho is a family physician in London, Ont.</em></p>
<p>As a family physician who cares for people with chronic illnesses and disabilities, I was drawn into the debate around assisted dying out of concern for my patients, who often suffer from <a href="https://www.macleans.ca/opinion/dying-for-the-right-to-live">poverty and inadequate resources</a>. So they might feel pressured to choose death <a href="https://www.zonmw.nl/nl/onderzoek-resultaten/ouderen/programmas/project-detail/vooronderzoek-voltooid-leven/het-perspectief-project-perspectieven-op-de-doodswens-bij-voltooid-leven-de-mens-en-de-cijfers/">because of inadequate supports</a> to live or because a doctor perceives that they might be <a href="https://nationalpost.com/news/canada/denied-assisted-life-by-hospital-ontario-man-is-offered-death-instead-lawsuit">better off dead</a>.</p>
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<figcaption><span class="caption">Dr. Ramona Coelho’s testimony before the Senate Committee Pre-Study on Bill C-7.</span></figcaption>
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<p>By expanding MAID, I believe we are ignoring the common good. <a href="https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/prevention-risks/about-non-medical-masks-face-coverings.html">We are wearing masks right now to protect our vulnerable due to COVID-19</a>. But we must similarly consider how expanding MAID will affect vulnerable persons.</p>
<p>One of my patients told me she is planning to access MAID because she lives in poverty and isolation, and doesn’t have home care supports for her disability. Sadly, <a href="https://www.citynews1130.com/2020/07/27/vancouver-woman-disabilities-medically-assisted-dying/">many other people with disabilities share her desperation</a>.</p>
<p>No one belongs on the margins of society. I chose to practise medicine because built into this work is the opportunity to help and heal. What a privilege! If many of us can keep our focus on <a href="https://inclusioncanada.ca/wp-content/uploads/2018/02/CACL-and-PFC-Brief-Accessibility-and-Poverty-Reduction-Final-June-2017.pdf">reducing social inequality</a>, I can remain hopeful.</p>
<h2>Losing sleep</h2>
<p>We each have different reasons to lose sleep over Bill C-7 as it inches its way closer to becoming law. As the bill proceeds to the Senate, Canadians need to consider where this path leads, and understand how it will affect vulnerable people. </p>
<p>Rather than expanding access to MAID, the priority should be to ensure access to the care and supports necessary to live and, when the time comes, to have a peaceful natural death with high quality palliative care.</p>
<p><em>This article was also co-authored by Ramona Coelho, a family physician in London, Ont.</em></p><img src="https://counter.theconversation.com/content/153540/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>Expanding access to medical assistance in dying (MAID) to those not terminally ill puts vulnerable people at risk of feeling pressured into MAID, and doctors at risk of being forced to facilitate it.Heidi L. Janz, Adjunct Professor of Disability Ethics, John Dossetor Health Ethics Centre, University of AlbertaLeonie Herx, Division Chair & Associate Professor of Palliative Medicine, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1371152020-05-11T13:49:37Z2020-05-11T13:49:37ZChildren with disabilities face health risks, disruption and marginalization under coronavirus<figure><img src="https://images.theconversation.com/files/332425/original/file-20200504-83779-9q5o48.jpg?ixlib=rb-1.1.0&rect=77%2C99%2C5971%2C4803&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Because support from specialized professionals and technologies is often accessed through schools, families of children with disabilities may find childcare and education particularly challenging during COVID-19 school closures.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>COVID-19 has been disruptive to all families, but the effects of school closures, medical equipment shortages and social distancing are further amplified for families of children with disabilities.</p>
<p>As an assistant professor in the School of Rehabilitation Science at McMaster University, a CanChild Scientist and adjunct scientist at Bloorview Research Institute, I study children’s rehabilitation services including family-centred care, ethics, access and equity. I’m concerned about the challenges that children with disabilities and their families face during COVID-19, and can offer some ideas for taking prompt action and promoting allyship.</p>
<h2>Concerns about care and COVID-19 risks</h2>
<p>People with disabilities may experience <a href="https://www.thenation.com/article/society/immunocompromised-children-coronavirus/">serious complications or death due to COVID-19</a>, however this group was <a href="https://www.cbc.ca/news/canada/edmonton/covid-disability-protective-equipment-alberta-1.5537181">missed in messaging</a> about <a href="https://theconversation.com/people-with-a-disability-are-more-likely-to-die-from-coronavirus-but-we-can-reduce-this-risk-134383">at-risk populations</a>. They may also experience negative outcomes due to <a href="https://doi.org/10.1016/S2468-2667(20)30076-1">reduced quality of care</a>. Public screening facilities may be inaccessible or increase exposure for children and families. </p>
<p>Parents who have COVID-19 may lack the specialized child-care supports needed to isolate from their child. If a child contracts COVID-19 or otherwise requires hospitalization, <a href="https://www.cbc.ca/news/canada/british-columbia/woman-disability-dies-white-rock-hospital-covid-19-1.5543468">parents and personal support workers (PSW) may be denied hospital entry</a>. We must recognize that <a href="https://medium.com/@franco.carnevale/covid-19-pandemic-measures-ethical-consequences-of-barring-families-from-hospitals-and-long-term-951b812e7f49">caregivers provide communication and care support, improving care and protecting patients</a>.</p>
<p>Worldwide alarm was raised about the discriminatory nature of guidelines that may <a href="https://www.nytimes.com/2020/03/23/opinion/coronavirus-ventilators-triage-disability.html">limit acute care and resources for people with disabilities who have COVID-19</a> if hospitals become overwhelmed. <a href="https://www.vox.com/first-person/2020/4/4/21204261/coronavirus-covid-19-disabled-people-disabilities-triage">People who use ventilators are worried</a> and may avoid health care for fear that their ventilators may be given to someone else during an equipment shortage. Some people with disabilities in the United Kingdom were sent <a href="https://www.theguardian.com/commentisfree/2020/apr/09/nice-guidelines-coronavirus-pandemic-disabled">do not resuscitate (DNR) forms</a> during the pandemic. Learning and developmental disabilities have been given as reasons for some DNR orders. </p>
<p>These practices are unethical and devalue the lives of people with disabilities. In Canada, <a href="https://archdisabilitylaw.ca/covid-19-and-disability-recommendations-to-the-canadian-government-from-disability-related-organizations-in-canada-march-24-2020/">disability organizations have made recommendations</a> to promote the <a href="https://www.cbc.ca/news/opinion/opinion-disabled-covid-19-triage-orders-1.5532137">rights of people with disabilities</a>. Consultation in policy and guideline development should include people with disabilities and disability organizations to guard against ableist beliefs. </p>
<h2>Home-based family concerns</h2>
<p>Many children with disabilities require medication, personal protective equipment (PPE, such as gloves and masks), home care, respite and rehabilitation services. These resources are scarce or unavailable given <a href="https://www.disabilityscoop.com/2020/04/23/kids-who-rely-on-ventilators-cant-get-enough-supplies-putting-their-lives-at-risk/28216/">PPE shortages in communities</a>, <a href="https://www.thestar.com/news/gta/2020/04/13/activists-fear-for-safety-of-people-with-disabilities-after-funding-for-mobility-and-medical-devices-deemed-non-essential.html">delayed or cancelled dispensing of medical equipment</a>, cancellation of respite and group programs and the <a href="https://time.com/5826098/coronavirus-people-with-disabilities">potential for staffing shortages</a>. </p>
<p>Even if PSWs or home nurses are available, families may suspend the service to <a href="https://www.linkedin.com/pulse/one-covid-19-response-needed-most-never-came-ariana-a-jalfen">limit exposure to COVID-19 when staff are providing service in multiple homes</a>. The lack of supports and resources, paired with extra care responsibilities during COVID-19, may compound the <a href="https://doi.org/10.1080/08916930802354948">physical and mental health challenges already experienced by many parents of children with disabilities</a>.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/332459/original/file-20200504-83745-1ts3q98.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/332459/original/file-20200504-83745-1ts3q98.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=444&fit=crop&dpr=1 600w, https://images.theconversation.com/files/332459/original/file-20200504-83745-1ts3q98.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=444&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/332459/original/file-20200504-83745-1ts3q98.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=444&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/332459/original/file-20200504-83745-1ts3q98.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=558&fit=crop&dpr=1 754w, https://images.theconversation.com/files/332459/original/file-20200504-83745-1ts3q98.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=558&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/332459/original/file-20200504-83745-1ts3q98.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=558&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Six-year-old Peyton Denette is helped by her mom Kristy Denette as she works remotely with speech-language pathologist Olivia Chiu (on screen) from her home in Mississauga, Ont. Like many other children, Denette must adapt to online learning due to COVID-19.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Nathan Denette</span></span>
</figcaption>
</figure>
<p>With school closures, <a href="https://www.todaysparent.com/blogs/opinion/why-is-no-one-talking-about-how-unsustainable-this-is-for-working-parents/">parents are struggling to manage children’s education while balancing childcare and work</a> demands. This may be particularly hard for parents of children with disabilities because learning and school participation are often supported by a team of <a href="https://www.cbc.ca/radio/checkup/pandemic-home-schooling-families-children-special-needs-1.5522119">professionals such as educational assistants and speech-language pathologists, and by specialized technology</a>. Some of these supports have been discontinued, while others have been moved online.</p>
<p>Some children with disabilities will <a href="https://theconversation.com/ontarios-high-school-e-learning-still-hasnt-addressed-students-with-special-needs-121612">face greater challenges with online learning</a> if there are inadequate accommodations while for others, online learning is simply not an option. Families of children with disabilities are also <a href="https://www.canchild.ca/system/tenon/assets/attachments/000/000/619/original/ChildhoodDisabilityintheContextofPoverty_CanChild.pdf">more likely to experience socio-economic disadvantage</a>, including less access to the <a href="https://acorncanada.org/sites/default/files//Digital%20Economy%20Report%20Final.pdf">internet and technology</a>. </p>
<p>We must consider the accessibility of remote learning and <a href="https://www.youtube.com/watch?feature=share&v=jgxRoaAU6F0&fbclid=IwAR0Q3LRDeBeor3WnSqTBYl4oviGtCtHX3Egy1TycbFj5-EWQAyyiPTiy3sA&app=desktop">rehabilitation services, such as speech therapy</a>, as well as the stress placed on families of children with disabilities when remote and in-home supports and resources are not available.</p>
<h2>Group living environments</h2>
<p>People with disabilities of all ages who are cared for in group environments, such as facilities specifically for people with disabilities or long-term care (LTC) homes, face heightened risks for contracting COVID-19. <a href="https://www.thestar.com/news/gta/2020/04/28/fifth-covid-19-resident-death-at-participation-house-in-markham.html">Participation House, in Markham, Ont., is a devastating case</a>, where people with disabilities living in supportive housing have nearly all contracted COVID-19 and six people had died as of April 28, 2020. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/332464/original/file-20200504-83775-5kyo4i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/332464/original/file-20200504-83775-5kyo4i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=438&fit=crop&dpr=1 600w, https://images.theconversation.com/files/332464/original/file-20200504-83775-5kyo4i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=438&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/332464/original/file-20200504-83775-5kyo4i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=438&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/332464/original/file-20200504-83775-5kyo4i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=550&fit=crop&dpr=1 754w, https://images.theconversation.com/files/332464/original/file-20200504-83775-5kyo4i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=550&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/332464/original/file-20200504-83775-5kyo4i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=550&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Participation House in Markham, Ont., on April 15, 2020.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Frank Gunn</span></span>
</figcaption>
</figure>
<p><a href="https://www.cp24.com/news/mom-pleads-with-workers-to-return-to-markham-facility-for-vulnerable-adults-after-daughter-hospitalized-1.4894795">Staffing shortages</a> and their tremendous impact on residents and their families is alarming. The spread and death rate of COVID-19 in Canada’s LTC homes is dire, accounting for <a href="https://www.thestar.com/politics/federal/2020/05/07/82-of-canadas-covid-19-deaths-have-been-in-long-term-care.html">over 80 per cent the COVID-19 related deaths in Canada</a>. </p>
<p>This disproportionately affects people with disabilities, given that in 2016 over <a href="https://globalnews.ca/news/2843104/more-than-2900-ontarians-with-developmental-disabilities-live-in-long-term-care-facilities/">2,900 people with disabilities lived in LTC homes, more than half of whom were under 65 years old</a>. This pandemic has highlighted the gaping cracks in the care and living supports for people with disabilities and their families that must be attended to now and after this crisis has passed.</p>
<h2>Mental health concerns</h2>
<p><a href="https://doi.org/10.1001/jamainternmed.2020.1562">Mental health challenges</a> such as loneliness, depression and anxiety are some of the anticipated consequences of COVID-19. Specific attention should be paid to the mental health needs of children with disabilities. Children with neuromotor disabilities such as cerebral palsy are <a href="https://www.cps.ca/en/documents/position/mental-health-problems-neuromotor-disabilities">more likely than others to have mental health symptoms</a>, which may be exacerbated during the pandemic. The well-being of children with intellectual or language disabilities <a href="https://theconversation.com/how-coronavirus-could-affect-the-wellbeing-of-people-with-intellectual-disabilities-133540">may be negatively affected due to difficulties understanding the pandemic</a> and the need for precautions such as staying indoors. </p>
<p><a href="https://nationalpost.com/pmn/news-pmn/canada-news-pmn/disabled-canadians-feel-excluded-from-covid-19-messaging">COVID-19 information has not consistently been shared in accessible formats</a> (such as closed captioning and sign language interpretation), further marginalizing people with disabilities and increasing their health risks. The mental health of children with disabilities may be improved if information is made accessible to promote understanding and coping. For example, closed captioned videos explaining concepts such as social distancing.</p>
<p><a href="http://somatosphere.net/2020/structural-silencing.html">Strategies used by children with disabilities</a> to promote mental health may not currently be available, such as routines and social supports in schools and recreations programs. Children and families living with disability are often more socially isolated than others. Therefore, it can be difficult to create opportunities to interact with others, especially those that rely on language (for example, video chats). </p>
<p>Another threat during social isolation is <a href="https://www.doi.org/10.1001/jamainternmed.2020.1562">increased risk for abuse</a>, with children who have disabilities already experiencing <a href="http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.460.1007&rep=rep1&type=pdf">higher rates of abuse and neglect than other children</a>. If mental illness is <a href="https://www.cbc.ca/news/canada/british-columbia/months-isolation-mental-health-covid-1.5521649">the next wave of the pandemic</a>, specific attention needs to be paid to the mental health of children with disabilities who may be in need of protection. </p>
<h2>What should I do?</h2>
<p>Raise concerns about children with disabilities and their families and advocate for: </p>
<ol>
<li><p>Inclusion of people with disabilities in policy development. </p></li>
<li><p>Ensuring human and equipment resources are available for home and centre-based care. </p></li>
<li><p>Accessible information.</p></li>
<li><p>Promotion of social inclusion to advance mental health and child safety.</p></li>
</ol><img src="https://counter.theconversation.com/content/137115/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michelle Phoenix received previous funding from the Canadian Institutes of Health Research and the Canadian Child Health Clinician Scientist Program. She is a CanChild Scientist, Adjunct Scientist with Holland Bloorview Kids Rehabilitation Hospital, and Academic Member with the College of Audiologists and Speech-Language Pathologists of Ontario. </span></em></p>COVID-19 has left children with disabilities and their families lacking services, at risk for physical and mental health issues, and fearful of discriminatory choices for treating critical illness.Michelle Phoenix, Assistant Professor School of Rehabilitation Science, CanChild Scientist, McMaster UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1200812019-07-11T03:39:39Z2019-07-11T03:39:39ZWomen, rural and disadvantaged Australians may be missing out on care in the NDIS<figure><img src="https://images.theconversation.com/files/283426/original/file-20190710-44441-1j1bhlx.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Women make up 49% of Australians with a disability but just 37% of NDIS participants.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/443284864?src=TdLG-2KSFfGT_I74CXqgNw-1-41&studio=1&size=huge_jpg">Shutterstock</a></span></figcaption></figure><p>While the National Disability Insurance Scheme (NDIS) has made incredible improvements to the lives of many Australians living with disabilities, not everyone is benefiting from the scheme in the same way. </p>
<p><a href="https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7168-4">Our review</a>, published recently in journal BMC Public Health, found the structure of the NDIS may be exacerbating existing social inequities. Women, rural and regional Australians, and those from poor households are more likely to miss out on disability care than their peers. </p>
<p>In a <a href="https://documents.uow.edu.au/content/groups/public/@web/@bus/documents/doc/uow252343.pdf">survey of of economically disadvantaged people</a> with a disability, 31% were not even aware of the NDIS. A further 41% had heard of the NDIS and were eligible but had not applied due to bureaucratic complexities. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/understanding-the-ndis-how-does-the-scheme-work-and-am-i-eligible-for-funding-58726">Understanding the NDIS: how does the scheme work and am I eligible for funding?</a>
</strong>
</em>
</p>
<hr>
<p>Women make up 49% of Australians with a disability but <a href="https://www.ndis.gov.au/media/1358/download">just 37%</a> of NDIS participants. Further research is underway to help us understand why this is the case but it’s likely a reflection of broader gender inequities. </p>
<p><a href="https://www.dss.gov.au/sites/default/files/documents/04_2018/ndis_evaluation_consolidated_report_april_2018.pdf">Men are also more likely</a> to successfully secure NDIS services than women, which allows them to negotiate better deals and services from their allocated funds.</p>
<p>Accommodating the diversity of people’s circumstances is essential for the NDIS to achieve its goal of improving the lives of Australians with disability. </p>
<h2>Market-based policies can exacerbate inequities</h2>
<p>A 2018 <a href="https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/MarketReadiness/Report">Senate inquiry</a> into NDIS readiness found there were often too few providers equipped to deliver disability support services, especially in remote and regional areas. </p>
<p>Without enough good-quality providers with space to take on more clients, people may miss out on services. Our review found this was more likely to occur for women, people with lower education levels, and those in remote and regional areas. </p>
<p>Where markets are failing or thin, those who are most equipped to <a href="https://www.dss.gov.au/sites/default/files/documents/04_2018/ndis_evaluation_consolidated_report_april_2018.pdf">get in early</a> and establish service contracts are at an advantage over those who cannot. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/283449/original/file-20190710-44453-1grk5te.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/283449/original/file-20190710-44453-1grk5te.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/283449/original/file-20190710-44453-1grk5te.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/283449/original/file-20190710-44453-1grk5te.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/283449/original/file-20190710-44453-1grk5te.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/283449/original/file-20190710-44453-1grk5te.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/283449/original/file-20190710-44453-1grk5te.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">Those who get in early have more options.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/531537415?src=RHcYK8M47NTc1Zg_GI_fdQ-1-32&studio=1&size=huge_jpg">Olesia Bilkei</a></span>
</figcaption>
</figure>
<p>A local service provider can only take on so many customers before it hits limits on staffing and resources. Those who get in early manage to secure services for themselves. Those who don’t may miss out on services entirely, especially where there are only a few specialist providers.</p>
<p>There are many reasons why someone might not get in early, such as having other care duties, living remotely, living in unstable housing, or not having the energy to work through the complicated system. </p>
<h2>Self-managers get better services</h2>
<p>Every NDIS participant is allocated a personal budget that matches their needs and goals. There are three ways for participants to manage NDIS budgets:</p>
<ol>
<li>administered by the participant (self-managed)</li>
<li>chosen by the participant but administrated through a plan manager who pays invoices on behalf of the participant (plan-managed)</li>
<li>NDIA managed, where services are chosen by the participant from registered NDIS providers only.</li>
</ol>
<p>Or the participant may opt for a combination of these options.</p>
<p>The <a href="https://www.ndis.gov.au/media/431/download">24% of self-managed participants</a> carry the most administrative burden. They manage contracts and invoices themselves. But they also have the most flexibility to secure services, negotiate with service providers on price and access tailored services. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/heres-what-needs-to-happen-to-get-the-ndis-back-on-track-117835">Here's what needs to happen to get the NDIS back on track</a>
</strong>
</em>
</p>
<hr>
<p>Many service providers are <a href="https://www.csi.edu.au/media/Report_-_Competition__Collaboration_in_the_NDIS_2018.pdf">declining to take on contracts</a> with people who do not self-manage, because these participants take more time and pay less. This leaves those least able to manage their services without access to the most flexible and boutique services. </p>
<p>Up to <a href="https://www.tandfonline.com/doi/abs/10.1080/09687599.2018.1442321">40% of NDIS participants</a> with an intellectual disability would like more training on NDIS tasks so they can better self-manage or choose services. In particular, they want to develop their skills in looking after money, using computers, finding the right service, making choices and ensuring they’re heard. </p>
<h2>The system privileges an ‘ideal norm’</h2>
<p>The NDIS system is bureaucratically complex, and many people find it difficult to navigate. In this way, it seems be <a href="https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7168-4">catering to a concept of an “ideal norm”</a>: a person who can navigate the NDIS bureaucracy and take on complex additional administrative burdens. </p>
<p>The National Disability Insurance Agency (NDIA, the agency charged with implementing the NDIS), for example, has been sending letters to blind people in <a href="https://www.theguardian.com/australia-news/2019/jun/29/ndis-sent-letters-to-vision-impaired-and-blind-people-in-format-they-could-not-read">formats they cannot read</a>, such as printed letters without braille and PDF files that are incompatible with screen readers. This is due to to be rectified this month. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/283447/original/file-20190710-44505-k3trzs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/283447/original/file-20190710-44505-k3trzs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/283447/original/file-20190710-44505-k3trzs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/283447/original/file-20190710-44505-k3trzs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/283447/original/file-20190710-44505-k3trzs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/283447/original/file-20190710-44505-k3trzs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/283447/original/file-20190710-44505-k3trzs.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">Communication should always be tailored to the participant.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/355455980?src=-rW4HwtCBfyZHP2drlKfxw-1-71&studio=1&size=huge_jpg">Chinnapong/Shutterstock</a></span>
</figcaption>
</figure>
<p>Control over services may also be limited for people who are geographically or socially isolated, or do not have the skills to navigate NDIS systems to access plans, run budgets and find services.</p>
<h2>What can be done?</h2>
<p>Addressing market failures and a scarcity of providers is essential to ensuring the benefits of the NDIS are equitable. </p>
<p>Supporting people to navigate bureaucratic complexity in the scheme will level the playing field. </p>
<p>The <a href="https://www.ndis.gov.au/news/2970-increased-price-limits-ndis-service-providers-including-updates-western-australia">recent pricing changes</a> for service providers to travel to remote and regional areas may help address provider shortfalls. Further, plans to <a href="https://www.dss.gov.au/sites/default/files/documents/06_2018/response_to_the_joint_standing_committee_on_the_ndis-transitional_arrangements_.pdf">maintain critical supports</a> for essential services such as feeding and bathing in areas with too few providers will help address market failure. </p>
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<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>Greater funding support is needed for advocacy groups to help NDIS participants, including those economically disadvantaged and homeless, to access and navigate the NDIS bureaucracy. </p>
<p>Finally, to allow better assessment of equity in the NDIS, we need better data. We need a large-scale evaluation of the performance of the NDIS, similar to the <a href="https://www.dss.gov.au/sites/default/files/documents/04_2018/ndis_evaluation_consolidated_report_april_2018.pdf">previous evaluation</a> of NDIS trials. Existing data held within government on NDIS access should be reported publicly. </p>
<p>We need such actions to bridge the gap between Australians who are socially and financially equipped to navigate the NDIS and those who are not, or else people with critical needs may go without services and support.</p><img src="https://counter.theconversation.com/content/120081/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Gemma Carey receives funding from the NHMRC and ARC</span></em></p><p class="fine-print"><em><span>Eleanor Malbon 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>If you’re poor, female, or live in rural Australia, you’re less likely to access the NDIS or get as much bang for your buck.Eleanor Malbon, Research Fellow, UNSW SydneyGemma Carey, Associate Professor, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/978512018-06-11T20:36:57Z2018-06-11T20:36:57ZFive years on, NDIS is getting young people out of aged care, but all too slowly<figure><img src="https://images.theconversation.com/files/222090/original/file-20180607-137306-1u9bq7o.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4462%2C2416&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Through the NDIS, Kirby Littlely has been able to leave the nursing home where she stayed after a series of strokes.</span> <span class="attribution"><span class="source">NDIS/Summer Foundation</span></span></figcaption></figure><p>In July this year, the <a href="https://www.ndis.gov.au/about-us/what-ndis.html">National Disability Insurance Scheme</a> marks its fifth anniversary since <a href="https://www.ndis.gov.au/about-us/our-sites">starting at four trial sites</a>. The latest Summer Foundation <a href="https://www.summerfoundation.org.au/resources/ndis-report-card-june-2018/">NDIS Report Card</a> shows a 5% reduction in the number of young people entering aged care.</p>
<p>While this is a step in the right direction, it is a disappointingly small one. The number of young people living in aged care has remained just above 6,000 for the past 10 years. A 5% reduction in admissions in the past five years is barely scratching the surface of the total numbers still living in aged care.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/nursing-homes-are-no-place-for-young-people-with-disabilities-43847">Nursing homes are no place for young people with disabilities</a>
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<p>One explanation for the stubbornly high number of young people in residential aged care is that over half of the 2,000 people who have an NDIS plan are relatively new to the scheme, having entered between September 2017 and March 2018. This was a result of the “<a href="https://www.summerfoundation.org.au/wp-content/uploads/2017/12/cfc-newsletter-dec2017-web.pdf">facilitated access</a>” program, a concerted effort by the NDIS to link young people in aged care to the scheme. Dedicated NDIS staff are charged with signing up young people with disabilities living in nursing homes.</p>
<p>Through this program 1,109 young people in aged care have become NDIS participants. That’s 31% more than the 849 young people in aged care who joined between 2013 and 2017. The NDIS deserves credit for this marked turnaround.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=195&fit=crop&dpr=1 600w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=195&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=195&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=246&fit=crop&dpr=1 754w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=246&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=246&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">The numbers of young people in residential aged care (YPIRAC) who are signing up to the NDIS have picked up since September 2017, but are still below target.</span>
<span class="attribution"><a class="source" href="https://www.summerfoundation.org.au/resources/ndis-report-card-june-2018/">NDIS Report Card June 2018, Summer Foundation</a>, <span class="license">Author provided</span></span>
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<h2>So why is progress so slow?</h2>
<p>Finding young people living in aged care and linking them to the NDIS is a vital first step to creating positive and real change in their lives. However, a lot more work needs to be done to ensure that the person‘s NDIS plan is adequate and that they have the capacity and the necessary housing and supports in place to exit residential aged care. A closer look at the detail of the plans allocated to younger people with disabilities in residential aged care suggests inadequate plans may be part of the problem.</p>
<p><a href="https://www.aph.gov.au/Parliamentary_Business/Senate_Estimates/ca">Senate estimates data</a> (QON 185) show that the median plan value for young people in aged care is $104,563. This may help improve their quality of life, but when we break down this value we see that $77,539 could be taken up covering aged care costs alone. That leaves only $31,990 for assessments, support, home modifications and other essential supports needed to move out of residential aged care.</p>
<p>A significant factor forcing young people with high physical support into residential aged care is the lack of suitable, accessible and affordable housing. <a href="https://www.aph.gov.au/Parliamentary_Business/Senate_Estimates/ca">Senate estimates</a> (QON 194) revealed that only 23 or 1.5% of NDIS participants living in residential aged care have funding for housing in their plans. Many may be unable to leave because they have nowhere else to live.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/ndis-needs-the-market-to-help-make-up-at-least-60-shortfall-in-specialist-disability-housing-93479">NDIS needs the market to help make up at least 60% shortfall in specialist disability housing</a>
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<p>The <a href="https://www.summerfoundation.org.au/resources/ndis-report-card-june-2018/">report card</a> also shows that NDIS participants living in aged care have difficulty implementing their plans. The data revealed that only 51.3% of these participants were drawing on the funding in their plans. So almost half have funding they are not using. </p>
<p>This may reflect the lack of appropriately skilled support co-ordinators to help with plan implementation, workforce shortages and inadequate housing options. It may also be a result of institutionalisation, where a person loses the capacity to see a future for themselves living in the community.</p>
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<figcaption><span class="caption">There are still more than 6,000 young people living in aged care facilities because of a lack of affordable and appropriate housing.</span></figcaption>
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<h2>What more needs to be done?</h2>
<p>Overall, the NDIS has shown that a focused effort to connect people with the scheme is required and will yield results. Much more work, however, is needed to ensure NDIS plans are appropriately designed to support people to live in the community.</p>
<p>Moving out of residential aged care can be a complex and intensive process. While the NDIS has a very important role, so do the health system and other parts of government and society.</p>
<p>If we are to resolve the issues of young people in nursing homes, we need to recognise that access to the NDIS is only part of the solution. Critical enablers are:</p>
<ul>
<li>an effective plan that includes adequate support for implementation</li>
<li>community housing and social infrastructure that are accessible and inclusive of the needs of people with disabilities who have complex needs </li>
<li>a much larger and flexible workforce with the necessary attitudes and skills to work effectively with people who have high support needs </li>
<li>information and support to build the capacity of individuals to live in the community</li>
<li>hospital staff who are resourced to co-ordinate community supports to enable smooth patient discharge that avoids entry into residential aged care</li>
<li>community health services with the capacity to meet complex health-care needs including high-quality preventive health care and slow-stream rehabilitation.</li>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/how-the-ndis-is-using-the-market-to-create-housing-for-people-with-disability-83144">How the NDIS is using the market to create housing for people with disability</a>
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<img src="https://counter.theconversation.com/content/97851/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>George Taleporos is the Policy Manager at the Summer Foundation Ltd.</span></em></p>The NDIS has started to reduce the admissions of young people with disabilities to aged care facilities, but more than 6,000 are still waiting for more suitable accommodation.George Taleporos, Adjunct Senior Research Fellow, Living with Disability Research Centre, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/959242018-05-07T20:16:39Z2018-05-07T20:16:39ZExplainer: how much does the NDIS cost and where does this money come from?<figure><img src="https://images.theconversation.com/files/217871/original/file-20180507-166877-1boj64.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">More Australians are joining the NDIS than predicted, so cost predictions have had to be updated.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/1082478158?src=H-CKAI0JtcYSSkz1Ene1gg-1-31&size=medium_jpg">Shutterstock</a></span></figcaption></figure><p>Although the National Disability Insurance Scheme (NDIS) is relatively young, there has been much debate over how it will be funded. </p>
<p>Treasurer Scott Morrison recently said Labor had left a <a href="https://www.theaustralian.com.au/federal-budget/strong-economy-will-fund-ndis-scott-morrison/news-story/c52e310506043fda402874229c42ab7b">A$57 billion shortfall</a> in funding for the NDIS. So many were left scratching their heads at the announcement that next year’s proposed increase in the Medicare levy – which was supposed to cover some of this shortfall – <a href="https://theconversation.com/turnbull-government-abandons-8-2-billion-medicare-levy-increase-95606">would be scrapped</a>.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/turnbull-government-abandons-8-2-billion-medicare-levy-increase-95606">Turnbull government abandons $8.2 billion Medicare levy increase</a>
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<p>So how much does, and will, the scheme actually cost? Who is supposed to pay for it and why is there debate over the funding?</p>
<h2>Calculating the costs</h2>
<p>These are difficult questions to answer because we lack high-quality data about the extent and nature of disability in Australia. The information we do have is based on predictions, and work is underway to check these are accurate. </p>
<p>The case for creating an NDIS was made by the Productivity Commission in its 2011 inquiry on <a href="https://www.pc.gov.au/inquiries/completed/disability-support/report/disability-support-volume1.pdf">Disability Care and Support</a>. The commission recommended Australia’s system of inequitable, fragmented and inefficient disability services be replaced by a new national scheme that would provide insurance cover to all Australians in the event of significant disability. </p>
<p>The one thing all sides of politics agree on is the NDIS represents a significant increase in disability spending, which stood at around A$8 billion per year at the time of the initial Productivity Commission report. </p>
<p>Original estimates suggested the NDIS would cover 411,000 participants and cost A$13.6 billion at maturity. However the Productivity Commission <a href="https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs.pdf">now estimates</a> that around 475,000 people with disability will receive individualised support at a cost of around A$22 billion per year. </p>
<p>The A$8.9 billion difference between the Productivity Commission’s original estimates and the current estimate is a substantial gap. But A$6.4 billion of this difference is due to pay rises awarded to <a href="https://www.fairwork.gov.au/pay/minimum-wages/social-and-community-services-industry-pay-rates">social and community services employees</a>. </p>
<p>The remainder is due to the growth in the population and also the inclusion of participants over 65 years who were not included in original estimates. Once we account for these, estimates are fairly close to those originally predicted. </p>
<p>Last year’s <a href="https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs.pd">Productivity Commission review of costs</a> found the NDIS was broadly coming in on budget. Greater-than-expected numbers of children with autism and intellectual disability were accessing the scheme, but not all those with an individualised plans were able to spend their budgets. </p>
<p>So, for now, the NDIS seems to be tracking as intended. The NDIS budget is estimated to gradually increase over time to 1.3% of GDP by 2044-45 as participants age. Estimates also suggest the scheme will produce benefits adding around 1% to the GDP. </p>
<h2>Where the money comes from</h2>
<p>The original Productivity Commission report suggested the federal government be the single funder of the NDIS and that revenue to support the NDIS be paid into a separate fund (the National Disability Insurance Premium Fund) to provide stable funding for the scheme. </p>
<p>The Productivity Commission suggested this approach because disability services have long been <a href="https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/BriefingBook45p/NDIS">subject to debate</a> about who should bear the costs of these services: the Commonwealth or the states and territories. Indeed, part of the reason for the NDIS was to guarantee funding for disability services and stop these debates and blame-shifting. </p>
<p>But this isn’t what happened. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-ndis-costs-are-on-track-but-that-doesnt-mean-all-participants-are-getting-the-support-they-need-79424">The NDIS costs are on track, but that doesn't mean all participants are getting the support they need</a>
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<p>The way the NDIS is funded is complex, with revenue coming from a number of sources. The NDIS is funded via a pooled approach from Commonwealth and state and territory governments. The Commonwealth provides <a href="https://www.ndis.gov.au/about-us/governance/federal-funding">just over half</a> of the funding for the NDIS and the rest comes from state and territories. This arrangement is governed by a number of <a href="https://www.ndis.gov.au/about-us/governance/intergovernmental-agreements">bilateral agreements</a> that are revisited every five years. </p>
<p>At the creation of the scheme, all existing money spent by various governments was directed into the NDIS to cover costs. Then, in July 2014 we saw a first increase in the Medicare levy: from 1.5% to 2% of taxable income. </p>
<p>However, the increased Medicare levy doesn’t meet the full costs of the scheme – just as the levy <a href="https://theconversation.com/explainer-what-is-medicare-and-how-does-it-work-22523">doesn’t cover all the annual costs of Medicare</a>. This revenue was directed into a special fund for the NDIS, <a href="https://www.finance.gov.au/investment-funds/disabilitycare-australia-fund/">DisabilityCare Australia</a>, which is designed to reimburse governments for NDIS expenditure. </p>
<p>Any additional funding the NDIS needs has to come from general budget revenue or borrowings. </p>
<p>The <a href="https://probonoaustralia.com.au/news/2016/03/new-ndis-account-to-lock-in-funding/">NDIS Savings Fund Special Account</a> was established to collect the Commonwealth’s contribution to the scheme. This fund pools underspends or savings from across government, protecting these as a forward contribution to the scheme as it grows over future budgets. </p>
<h2>Behind the funding debate</h2>
<p>Warnings have been sounded about the NDIS’s reliance on multiple sources, fearing it <a href="https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/rp/BudgetReview201314/DisabilityCare">creates a risk of future instability</a> of financing. </p>
<p>When the Labor government originally introduced the NDIS, it said it would fund the scheme through an increase in the Medicare levy, reforms to private health insurance and retirement incomes, and a range of “<a href="http://www.budget.gov.au/2013-14/content/bp1/html/bp1_bst6-01.htm">selected long-term savings</a>” including an increase in tobacco excise and changes to fringe benefits tax rules. </p>
<p>Labor said the combination of these revenue streams would ensure the NDIS was fully funded to 2023. But many of the savings Labor promised were intentional, rather than set in stone, and were not dedicated to the NDIS as the Medicare levy was. </p>
<p>It’s estimated the Commonwealth will contribute around <a href="http://www.budget.gov.au/2016-17/content/bp1/html/">A$11.2 billion</a> to the NDIS in 2019. Of this, around <a href="http://www.budget.gov.au/2016-17/content/bp1/html/">A$6.8 billion</a> will come from the redirection of existing disability funds and the Commonwealth’s share of the DisabilityCare Australia Fund. </p>
<p>This leaves an annual funding gap of around <a href="http://www.abc.net.au/news/2017-02-15/ndis-funding-explainer/8271996">A$4 billion</a> once the scheme becomes fully operational, accumulating to around <a href="http://www.budget.gov.au/2017-18/content/bp1/download/bp1.pdf">A$56 billion</a> by 2028.</p>
<p>The Commonwealth announced it would <a href="http://budget.gov.au/2017-18/content/glossies/essentials/html/essentials-02.htm">increase the Medicare levy</a> from 2% to 2.5% of taxable income from July 2019 as a way of filling the funding gap. Estimates predicted this would raise an additional <a href="https://www.smh.com.au/politics/federal/turnbull-government-to-scrap-8-billion-medicare-levy-increase-20180425-p4zbl1.html">A$8 billion</a> in revenue over its first two years.</p>
<p>The bill needed to do this had stalled in the Senate, with Labor and the Greens opposed. They suggested the increase should only be applied to those in higher income tax brackets. </p>
<p>Last week the Treasurer announced tax receipts were running <a href="https://www.smh.com.au/politics/federal/turnbull-government-to-scrap-8-billion-medicare-levy-increase-20180425-p4zbl1.html">A$4.8 billon</a> higher than was estimated in December, meaning the levy was no longer needed. </p>
<p>For now it looks like funding for the NDIS is assured, but many within the disability community have <a href="http://www.abc.net.au/news/2018-04-26/disability-advocates-cautious-new-ndis-funding/9697114">expressed concern</a> this does not assure funding for the long term and uncertainty may continue to prevail. </p>
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Read more:
<a href="https://theconversation.com/disability-workers-are-facing-longer-days-with-less-pay-93953">Disability workers are facing longer days with less pay</a>
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<img src="https://counter.theconversation.com/content/95924/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Helen Dickinson receives funding from the ARC and NHMRC. She is also a board member of the Consumer Policy Research Centre.</span></em></p>Treasurer Scott Morrison abandoned the proposed increase to the Medicare levy to pay for the NDIS. Here’s what you need to know about how the NDIS is funded, and how cost predictions have changed.Helen Dickinson, Associate Professor, Public Service Research Group, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/934182018-03-16T04:00:36Z2018-03-16T04:00:36ZThe technology that gave Stephen Hawking a voice should be accessible to all who need it<figure><img src="https://images.theconversation.com/files/210717/original/file-20180316-104645-6iiy85.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Acclaimed British theoretical physicist, cosmologist and author Stephen Hawking passed away peacefully at his home in Cambridge aged 76.</span> <span class="attribution"><span class="source">Intel Corporation</span></span></figcaption></figure><p>Stephen Hawking was one of the most prominent people in history to use a high-tech communication aid known as <a href="https://www.isaac-online.org/english/what-is-aac/">augmentative and alternative communication (AAC)</a>. </p>
<p><a href="http://www.abc.net.au/news/2018-03-14/stephen-hawking-dies-aged-76/9547454">His death</a> comes in the year of the <a href="https://www.tandfonline.com/doi/full/10.1080/17549507.2018.1428687">70th Anniversary of the Declaration of Human Rights</a>. Over the course of his adult life, Hawking came to represent the epitome of what effective communication with AAC systems really means: gaining access to the human right of communication enshrined in <a href="http://www.un.org/en/universal-declaration-human-rights/">Article 19 of the Universal Declaration of Human Rights</a>.</p>
<p>Today, many Australians who need AAC <a href="https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Speech_Pathology/Report">still lack access to the technology</a> and the support they need to use it. It’s time for that to change. </p>
<h2>How augmentative and alternative communication works</h2>
<p>To most people who can speak, AAC systems are a bit of a mystery – it’s not always clear how the person using it is controlling the system. Indeed, people’s fascination with how a speech device works often overtakes their attention to what the person is actually saying. </p>
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<p>AAC includes sign and gesture systems, communication boards, speech-generating devices, mobile phones with apps, and even emojis and <a href="https://www.tandfonline.com/doi/full/10.1080/17549507.2017.1413137">social media</a>. Ultimately it works not only through the interaction of the user with their device, but also through their interactions with communication partners. </p>
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<em>
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Read more:
<a href="https://theconversation.com/stephen-hawking-as-accidental-ambassador-for-assistive-technologies-70627">Stephen Hawking as accidental ambassador for assistive technologies</a>
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<p>Some types of AAC don’t involve technology at all, but use the person’s body, such as sign or gesture systems. Some AAC systems are <a href="https://www.ncbi.nlm.nih.gov/pubmed/20583966">non-electronic</a>, like communication boards, books, or wallets for people to point to or look at letters, words or phrases to communicate. Other types of AAC are known as “high-tech”, in that they involve <a href="https://www.youtube.com/watch?v=SaLjMWbAnSw">electronic systems and computer-based technologies</a> to both store and retrieve words for communication. </p>
<p>Apart from the time taken to compose a message, it can take hours to program what could be spoken using a communication aid – and many more to ensure that the desired words can be found <a href="https://link.springer.com/article/10.1007/s10882-015-9452-2">just in time</a> for communication. </p>
<p>Hawking <a href="https://www.youtube.com/watch?v=UErbwiJH1dI">used a switch to control software on a computer</a> that enabled him to talk. This kind of switch allows users to scan through options shown on the screen until they reach the letter, word or message to select for the device to “speak”. </p>
<h2>Realising the potential of people with communication disability</h2>
<p>Hawking did not tend to use his platform in relation to <a href="https://theconversation.com/stephen-hawking-as-accidental-ambassador-for-assistive-technologies-70627">disability</a>, but when he did his words were significant. In writing the <a href="http://www.who.int/disabilities/world_report/2011/report.pdf">foreword to the World Report on Disability in 2011</a>, he highlighted the importance of people with disability having access to the equipment that they need, saying:</p>
<blockquote>
<p>…we have a moral duty to remove the barriers to participation, and to invest sufficient funding and expertise to unlock the vast potential of people with disabilities.</p>
</blockquote>
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<p>
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<strong>
Read more:
<a href="https://theconversation.com/a-timeline-of-stephen-hawkings-remarkable-life-93364">A timeline of Stephen Hawking's remarkable life</a>
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<p>A patron of the Motor Neurone Disease Association, Hawking inspired millions of people around the world with the condition. His lifetime achievement as a person who uses AAC was recognised by the <a href="https://www.isaac-online.org/wordpress/wp-content/uploads/Stephen-Hawking-Lifetime-Achievement-Award-announcement-FINAL.pdf">International Society for Augmentative and Alternative Communication</a>. </p>
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<p>Although he hoped to be remembered more for his science than for his popular appearances on The Simpsons, his character delivered a vital line on communication rights and the need for AAC with a firm directive: “Silence. I don’t need anyone to talk for me except this voice box.”</p>
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<figcaption><span class="caption">Stephen Hawking guest starred on The Simpsons multiple times.</span></figcaption>
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<p>His call to “look up at the stars”, should further compel AAC users and communication technologists to work together and <a href="https://www.tandfonline.com/doi/abs/10.1080/08990220802387851">reach for the stars</a> in finding solutions for people who cannot rely on speech to communicate.</p>
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<figcaption><span class="caption">Stephen Hawking appeared via hologram to address an audience at the Sydney Opera House in April 2015.</span></figcaption>
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<h2>People who use AAC need to have a say in the design process</h2>
<p>Hawking’s fame attracted the world’s best and brightest to work with him to solve problems around the use of communication technologies. But AAC systems still don’t stop people from “<a href="https://www.researchgate.net/publication/225183732_Slipping_Through_the_Timestream_Social_Issues_of_Time_and_Timing_in_Augmented_Interactions">slipping through the timestream</a>” of conversation. Communication using AAC systems is slow and effortful.</p>
<p>It can be hard to make a comment in a conversation – by the time the person has got the attention of other speakers and composed their message, the conversation has moved on, and the message is delivered “out of time”. It’s a puzzle to find systems that improve the timing and flow of talk, to match each user’s communication needs. </p>
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Read more:
<a href="https://theconversation.com/listen-to-me-machines-learn-to-understand-how-we-speak-42812">Listen to me: machines learn to understand how we speak</a>
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<a href="https://images.theconversation.com/files/210687/original/file-20180315-104650-9aaihq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/210687/original/file-20180315-104650-9aaihq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/210687/original/file-20180315-104650-9aaihq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=448&fit=crop&dpr=1 600w, https://images.theconversation.com/files/210687/original/file-20180315-104650-9aaihq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=448&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/210687/original/file-20180315-104650-9aaihq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=448&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/210687/original/file-20180315-104650-9aaihq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=562&fit=crop&dpr=1 754w, https://images.theconversation.com/files/210687/original/file-20180315-104650-9aaihq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=562&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/210687/original/file-20180315-104650-9aaihq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=562&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Meredith Allan, President-Elect of the International Society for Augmentative and Alternative Communication and PhD candidate at Deakin University, delivers a lecture using AAC technology.</span>
<span class="attribution"><span class="source">Author supplied</span></span>
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<p>Even as communication tech advanced and Hawking’s distinct voice <a href="https://www.npr.org/2014/12/07/369108538/stephen-hawking-gets-a-voice-tech-upgrade">got an upgrade</a>, he chose to keep his “<a href="https://www.reuters.com/article/us-people-hawking-voice/stephen-hawkings-voice-was-his-tool-and-his-trademark-idUSKCN1GQ2XC">robotic drawl</a>”. Like the famous film critic <a href="https://www.ted.com/talks/roger_ebert_remaking_my_voice">Roger Ebert before him</a>, he had the final say on his own vocal identity. </p>
<p>Hawking’s empowered story highlights the importance of designers not allowing ableist notions of an acceptable voice to restrict an AAC user’s self-expression. His stance also reflects the importance of people who use AAC co-designing AAC systems that reflect their own <a href="https://www.isaac-online.org/conference/modules/request.php?module=oc_program&action=view.php&id=179&type=1&a=">identity</a>.</p>
<h2>Making AAC accessible to all</h2>
<p>Hawking knew his privileges in having access to the equipment and <a href="https://www.tandfonline.com/doi/full/10.3109/07434618.2014.885080">the social supports he needed</a> to participate. Unfortunately, many people in Australia who need AAC <a href="https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Speech_Pathology/Report">lack access</a> not only to the funds they need for the technology, but also to the professionals, such as speech pathologists, who know how to design and teach people how to use communication systems. </p>
<p>The Australian Bureau of Statistics <a href="http://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4430.0Main%20Features872015?opendocument&tabname=Summary&prodno=4430.0&issue=2015&num=&view=">estimates</a> that as many as 1.2 million Australians have a communication disability. With roughly a quarter of all people with <a href="http://cpaustralia.com.au/media/20379/access_economics_report.pdf">cerebral palsy</a> or autism spectrum disorders being <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3869868/">unable to rely on speech to communicate</a>, it is vital that more is done to improve access to AAC worldwide.</p>
<p>Like all people who use AAC, Stephen Hawking was unique. It’s time to make communication systems like the one he used available for all who need it, so that they too can have their chance to shine.</p><img src="https://counter.theconversation.com/content/93418/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Bronwyn Hemsley is an Editor-in-Chief of the international journal 'Augmentative and Alternative Communication', a role for which she receives an annual honorarium, and member of the research committee of the International Society for Augmentative and Alternative Communication (ISAAC). Her research on the use of communication technologies for people with communication disability has been funded by the Australian Research Council and the National Health and Medical Research Council. She is a Fellow of Speech Pathology Australia and Fellow of ISAAC International.</span></em></p>Hawking’s life embodied what it means to have access to the human right of communication through communication technology.Bronwyn Hemsley, Professor of Speech Pathology, University of Technology SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/706272018-03-14T18:40:35Z2018-03-14T18:40:35ZStephen Hawking as accidental ambassador for assistive technologies<figure><img src="https://images.theconversation.com/files/210290/original/file-20180314-113475-1lqlm8y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A computer-generated voice was essential to Hawking's participation in the world around him.</span> <span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Hawking-Flight/279f26e4d6074167b66df1a71009fb66/14/0">AP Photo/John Raoux</a></span></figcaption></figure><p>Imagine you’ve contemplated the great scientific theories of the past and arrived at new insights based on your own observations. Imagine you’ve organized these thoughts into compelling arguments. Imagine that what you have to say will likely advance humanity’s understanding of its existence. Now imagine your frustration if you were unable to use your physical voice or hands to speak or write the thoughts coalescing in your mind.</p>
<p>Such was the situation for <a href="https://www.nytimes.com/2018/03/14/obituaries/stephen-hawking-dead.html">Stephen Hawking</a>, the great explainer of the universe, who <a href="https://theconversation.com/tributes-pour-in-for-stephen-hawking-the-famous-theoretical-physicist-who-died-at-age-76-93363">died on March 14</a>. He was a brilliant physicist <a href="http://www.hawking.org.uk/publications.html">who published more than 230 scientific articles</a>, papers, books, book chapters and children’s books. He gave countless lectures and stretched humankind’s understanding of the nature of our existence. Hawking was well-regarded by his scientific peers but also explained his thoughts in ways that make sense to everyone else. This is an unparalleled contribution for anyone, but especially for someone whose communication was severely limited by <a href="http://www.alsa.org/about-als/">ALS, or amyotrophic lateral sclerosis</a>. </p>
<p>At age 21, Hawking was given the standard two to five years to live after his ALS diagnosis. He beat the predictions. Hawking lived with the physical effects of this neurodegenerative disease for more than half a century. </p>
<p>Fortunately, Hawking lived in a time when researchers were rapidly developing electronic technology to assist people with physical limitations in achieving increased independence. Here at Montana’s <a href="http://ruralinstitute.umt.edu">University Center for Excellence on Developmental Disabilities</a>, we investigate and promote services and supports that increase quality of life, independence and integration of people with disabilities. For us, Hawking was a valuable role model for more than the next generation of scientists. With his recognizable wheelchair and computer-generated voice, he demonstrated the value of technological solutions to liberating the voice of those with physical and communication disabilities.</p>
<h2>Tech fills in for functional limitations</h2>
<p>So-called assistive technologies provide a means for people to move from place to place, to eat independently, to see and hear what they can’t otherwise perceive. They include basic things like wheelchairs to help people move around, magnifiers that increase the size of text or images to make them easier to see, even nonelectronic items like large-handled kitchen utensils that are easier to hold; think about everyday things in your kitchen drawers such as can openers, spoons, spatulas and the like.</p>
<p>Assistive technologies range from the seemingly simple all the way to speech-generating devices (SGD) that provide a physical voice to those who don’t have one. <a href="http://www.bbc.com/news/technology-33991887">Stephen Hawking’s SGD system</a> combined relatively simple technology together in a unique and functional way. <a href="http://www.hawking.org.uk/the-computer.html">In his own words he described</a> how he managed a tablet computer with an infrared switch that he controlled with cheek movements:</p>
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<p>“[An open source program] provides a software keyboard on the screen. A cursor automatically scans across this keyboard by row or by column. I can select a character by moving my cheek to stop the cursor. My cheek movement is detected by an infrared switch that is mounted on my spectacles. This switch is my only interface with the computer. [The open source program] includes a word prediction algorithm … so I usually only have to type the first couple of characters before I can select the whole word. When I have built up a sentence, I can send it to my speech synthesizer. … I can also control the mouse in Windows. This allows me to operate my whole computer. I can check my email… surf the internet … or write lectures. My latest computer … contains a webcam which I use with Skype.”</p>
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<figcaption><span class="caption">Stephen Hawking’s voice and the machine that powers it.</span></figcaption>
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<h2>Setting an example and normalizing SGDs</h2>
<p>Among his many accomplishments, one that might not be readily apparent was Hawking’s role as a “spokesmodel” for the use of assistive technologies. In a way, he was like a brand ambassador – a person who made the connection between consumers and products. He demonstrated throughout his adult life that technology was simply a tool that enabled him, and others like him, to fully participate and contribute to the world around him. Rather than one particular keyboard or software system, the “product” that Hawking promoted was the concept that physical limitation cannot hamper the human mind.</p>
<p>Tech solutions, all of which are part of everyday 21st-century life, are used to overcome physical limitations imposed by functional disabilities. From complex solutions used by well-known people – such as the late Christopher Reeve’s use of a high-tech wheelchair – to simpler ones like screen magnifiers on our computers and speech recognition “voice commands” on our smartphones, technology makes some tasks easier. In a very public way, Hawking demonstrated that it is OK – maybe even somewhat cool – to use technology to enhance or enable communication, to move around, work, play and fully participate in family and professional activities.</p>
<p>“Stephen Hawking is the most recognizable speech-generating device user in the world,” said Julie Doerner, the former clinical coordinator of MonTECH, a program I oversee at the Rural Institute for Inclusive Communities. MonTECH, one of 56 <a href="http://ataporg.org">statewide assistive technology programs</a> in the U.S. and its territories, loans equipment for free to Montanans with disabilities to help them with the tasks of everyday life including reading, bathing, typing, eating, or simply getting from place to place. She continued, “When I explain assistive technology devices to others, I use Stephen Hawking as an example. They all know who he is.” The response is usually, “ah, that’s cool!”</p>
<p>Hawking and other high-profile users show the world that technology is not strange, nor does it diminish or magnify them as human beings. The technology they use allows others to look past disability and focus their attention on who they are, on them as people. And Hawking’s fame raised the visibility of speech-generating technologies, helping them seem more commonplace than weird for people all over the world – both those who might need SGDs and those who might encounter others using them to communicate.</p>
<p>Advances in technology that help us interact with the world around us are <a href="https://www.entrepreneur.com/article/245192">limited only by our imagination</a>. We now take for granted that we can ask our smartphone questions, that it can guide us to our next appointment, monitor our heart rate, measure our steps, help us find and communicate with others, and on and on. Smart technologies are being incorporated into our kitchen appliances, shoes, vehicles and eyeglasses. These and the world of robotics stretch our thinking about ways in which <a href="https://www.pcmag.com/commentary/353201/the-future-of-assistive-tech-is-smart">technology can enhance human independence</a>, regardless of physical, and sometimes cognitive, limitations.</p>
<p>How these advances will benefit people with disabilities remains to be seen. One thing is certain though. The use of assistive technologies in our everyday world diminishes the differences between people with different abilities. We owe much to Professor Hawking’s example. Ah, that’s cool!</p><img src="https://counter.theconversation.com/content/70627/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Martin Blair receives funding from the U.S. Administration on Community Living. He is affiliated with the Association of University Centers on Disabilities in Silver Spring, Maryland. </span></em></p>You can probably hear Hawking’s famously computer-generated voice in your head. His example showed tech as a tool that enables people with disabilities to fully participate in and contribute to the world.Martin E. Blair, Executive Director of the Rural Institute for Inclusive Communities, and Associate Professor of Teaching and Learning, University of MontanaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/840372017-10-06T00:55:30Z2017-10-06T00:55:30ZAre self-driving cars the future of mobility for disabled people?<figure><img src="https://images.theconversation.com/files/186318/original/file-20170918-24089-1jhnwat.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A self-driving shuttle at Texas A&M.</span> <span class="attribution"><a class="source" href="http://www.preciouspixels.org">Swaroopa Saripalli</a>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span></figcaption></figure><p>Self-driving cars could revolutionize how disabled people get around their communities and even travel far from home. People who can’t see well or with physical or mental difficulties that prevent them from driving safely often rely on others – or local government or nonprofit agencies – to help them get around.</p>
<p>Autonomous vehicle technology on its own is not enough to help these people become more independent, but simultaneous advances in <a href="https://www.technologyreview.com/s/603899/machine-learning-opens-up-new-ways-to-help-disabled-people/">machine learning</a> and <a href="https://www.usatoday.com/story/tech/news/2016/03/23/facebook-accessibility-people-with-disabilities/82026554/">artificial intelligence</a> can enable these vehicles to understand spoken instructions, observe nearby surroundings and communicate with people. Together, these technologies can provide independent mobility with practical assistance that is specialized for each user’s abilities and needs.</p>
<p>A lot of the necessary technology already exists, at least in preliminary forms. Google has asked a <a href="https://www.washingtonpost.com/local/trafficandcommuting/blind-man-sets-out-alone-in-googles-driverless-car/2016/12/13/f523ef42-c13d-11e6-8422-eac61c0ef74d_story.html">blind person to test its autonomous vehicles</a>. And Microsoft recently released an app called “<a href="https://www.microsoft.com/en-us/seeing-ai/">Seeing AI</a>” that helps visually impaired people better sense and understand the world around them. “Seeing AI” uses <a href="https://theconversation.com/removing-gender-bias-from-algorithms-64721">machine learning</a>, <a href="https://theconversation.com/teaching-machines-to-understand-and-summarize-text-78236">natural language processing</a> and <a href="https://www.youtube.com/watch?v=eQLcDmfmGB0">computer vision</a> to understand the world and describe it in words to the user. </p>
<p>In the <a href="http://unmanned.tamu.edu">lab I run</a> at Texas A&M, along with the <a href="http://tti.tamu.edu">Texas A&M Transportation Institute</a>, we are developing protocols and algorithms for people with and without disabilities and autonomous vehicles to communicate with each other in words, sound and on electronic displays. Our self-driving shuttle has given rides to 124 people, totaling 60 miles of travel. We are finding that this type of service would be more helpful than current transportation options for disabled people.</p>
<h2>Paratransit today</h2>
<p>Under the <a href="https://www.ada.gov/pubs/ada.htm">Americans with Disabilities Act of 1990</a>, all public transit agencies must offer transportation services to people with physical handicaps, visual or mental conditions or injuries that prevent them from driving on their own. In most communities, this type of transport, typically called “<a href="http://nationalrtap.org/adatoolkit/ADA-Complementary-Paratransit">paratransit</a>,” is sort of like an extra-helpful taxi service run by public transit. Riders make reservations in advance for rides to, say, grocery stores and medical appointments. The vehicles are usually wheelchair-accessible and are driven by trained operators who can help riders board, find seats and get off at the right stop.</p>
<p>Like taxis, paratransit can be costly. A <a href="http://www.gao.gov/assets/660/650079.pdf">Government Accountability Office report from 2012</a> provides the only reliable nationwide estimates. Those numbers suggest that per trip, paratransit costs three to four times what mass transit costs. And the costs are increasing, as are the <a href="http://www.gao.gov/assets/660/650079.pdf">number of people</a> needing to use paratransit. At the same time, federal, state and local <a href="http://www.metro-magazine.com/resources/images/paratransit-1.pdf">funding for transit authorities has stagnated</a>.</p>
<p>In an attempt to meet some of the demand, many communities have reduced the <a href="http://www.washingtonpost.com/wp-dyn/content/article/2010/05/24/AR2010052403749.html">geographic areas</a> where paratransit is available and asked disabled people to use mass transit when possible. Other places have <a href="https://www.washingtonpost.com/news/dr-gridlock/wp/2016/09/16/uber-lyft-partner-with-city-to-offer-paratransit-customers-on-demand-service-in-boston/">experimented with on-demand ride-hailing services</a> like Uber and Lyft. But in many cases the drivers are not trained to help disabled people, and the vehicles are not usually wheelchair-accessible or otherwise suitable for certain riders.</p>
<h2>A possible solution</h2>
<p>Autonomous shuttles, like the one we’re testing on the Texas A&M campus, can be a solution for these problems of access and funding. We envision a fully integrated system in which users can connect to the dispatching system and create profiles that include information on their disabilities and communications preferences as well as any particular frequent destinations for trips (like a home address or a doctor’s office).</p>
<p>Then, when a rider requests a shuttle, the system would dispatch a vehicle that has any particular equipment the rider needs, like a wheelchair ramp or extra room, for instance, to allow a service dog to travel.</p>
<p>When the shuttle arrives to pick up the rider, it could scan the area with lasers, cameras and radar to create a 3-D map of the area, merging those data with traffic and geographic information from various online sources like Google Maps and Waze. Based on all of those data, it would determine an appropriate boarding spot, identifying curb cuts that let wheelchairs and walkers pass easily as well as noting potential obstacles, like trash cans out for collection. The vehicle could even send a message to the rider’s smartphone to indicate where it’s waiting, and use facial recognition to identify the correct rider before allowing the person to ride.</p>
<p>During boarding, the ride and when the rider reached the destination, the vehicle could communicate any relevant information – such as estimated arrival time or details about detours – by interacting with the rider as appropriate and listening to the responses, or by displaying text on a screen and accepting typed input. That would allow the rider and the shuttle to interact no matter what the passenger’s abilities or limitations might be.</p>
<p>In our lab we are exploring various elements of rider-assistance systems, including automated wheelchair ramps and improved seating arrangements for multiple wheelchair-using passengers. We are also studying elements that affect safety, as well as riders’ trust in the vehicles. For example, we are currently developing machine-learning algorithms that <a href="https://www.osha.gov/Publications/Safe_Driving_Practices.pdf">behave like good human drivers</a> do, mimicking how humans respond to unforeseen circumstances.</p>
<p>Self-driving cars present fundamentally new ways to think about transportation and accessibility. They have the potential to change neighborhoods and individuals’ lives – including people who are disabled and often both literally and figuratively left behind. With proper planning and research, autonomous vehicles can provide even more people with significantly more independence in their lives.</p><img src="https://counter.theconversation.com/content/84037/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Srikanth Saripalli 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>Combining machine learning, artificial intelligence and autonomous vehicles could revolutionize how people with disabilities get around their communities.Srikanth Saripalli, Associate Professor in Mechanical Engineering, Texas A&M UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/832962017-09-19T19:38:31Z2017-09-19T19:38:31ZNDIS failing to catch children with late-onset difficulties<figure><img src="https://images.theconversation.com/files/186163/original/file-20170915-16328-1qxl454.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Early years settings, like preschools and kindergarten, are often the first place social difficulties are identified.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>The rollout of the <a href="https://www.ndis.gov.au/">National Disability Insurance Scheme</a> (NDIS) in selected sites in 2016 signified a shift in cultural views about disability. Historical views were based on a medical model derived from deficit, dysfunction and impairment. Today, we ask that building capacity, inclusion and access be the way forward for people and young children living with disabilities. </p>
<p>However, medical evidence is still required to establish entitlement, and some children with late-onset delays miss out.</p>
<h2>Children with late onset delays disadvantaged under the medical model</h2>
<p>Some children are born with congenital risk factors known to cause developmental delays - for example, very low birth weight, hereditary conditions, birth defects or trauma incidents. These factors ordinarily generate specialised monitoring or specific screening to identify issues as soon as possible, to enable families’ access to early childhood early intervention (ECEI). </p>
<p>However, not all delays in child development can be detected at birth or immediately post-partum. Late-onset delays usually present themselves at age two or three. In Australia, a universal approach to developmental health aims to capture this population of children.</p>
<p><a href="http://www.earlychildhoodaustralia.org.au/our-publications/australasian-journal-early-childhood/index-abstracts/ajec-vol-42-no-3-september-2017/national-disability-insurance-scheme-administrators-perspectives-agency-transition-user-pay-early-intervention-service-delivery/">A recent study</a> conducted in a pilot NDIS site found administrators of early childhood early intervention agencies predicted children with late onset delays would be poorly served under this model. </p>
<p>Although developmental health checking is in place, it is grounded in a medical view of “disease prevention” and “risk”, and its effectiveness relies on contact with parents. While the administrators recognised partnerships with families are vital, they expressed concern that parents wouldn’t have the time or the support necessary to understand the impact of late onset developmental disability before having to tick a box to apply for funding. The administrators observed that the NDIS invested little in the individuality of each family and the impact of a child’s difficulties. </p>
<p>For parents of children with late-onset delays, an understanding of developmental concerns should be encouraged and supported in preschool. </p>
<h2>Social disadvantage puts children at a greater risk</h2>
<p>Today, <a href="http://www.jstor.org/stable/41475645?seq=1#page_scan_tab_contents">the rates of children presenting in preschools with delayed development</a> are increasing. This is a result of the cumulative effects of <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2005.00270.x/epdf?r3_referer=wol&tracking_action=preview_click&show_checkout=1&purchase_referrer=onlinelibrary.wiley.com&purchase_site_license=LICENSE_DENIED">environmental factors and patterns of social disadvantage</a>.</p>
<p>Many parents from socially-disadvantaged families were less likely to attend developmental health-checking systems at child and family health clinics. They miss out on developmental health monitoring and information that helps them identify milestones and markers. </p>
<p>Because of this, <a href="http://www.tandfonline.com/doi/abs/10.1080/00223980.2013.853020">challenging behaviours</a> known to be associated with developmental delays and intellectual disability (such as non-compliance, tantrums or aggression) are often accepted in their homes. For these parents, it can be difficult to understand them as developmental concerns. Consequently, social difficulties are only flagged as a problem once their child starts preschool. </p>
<p>If parents can’t understand the significance of developmental milestones, it’s harder for them to understand the notion of being “delayed” or, more importantly, the impact on learning.</p>
<h2>Early childhood educators are well positioned to track development</h2>
<p>Working within the <a href="http://files.acecqa.gov.au/files/National-Quality-Framework-Resources-Kit/belonging_being_and_becoming_the_early_years_learning_framework_for_australia.pdf">Early Years Learning Framework</a> is an essential part of any early educator’s daily work of observing children’s play, interests and social behaviour. Tracking individual progress often leads to conversations with parents arising from evolving developmental concerns about a child over time. </p>
<p>Early years settings, like preschools, are often the first place parents are able to have routine conversations about health information, developmental progress and the wellbeing of their child. </p>
<p>Flagging developmental concerns with parents is never an easy task, especially when it relates to social behaviour. Talking about these concerns may also be at odds with families’ historical views of sickness and/or their experiences of child-rearing. Parents may be reluctant to believe their children has these problems. </p>
<p>Crucially, at the four-year-old stage – late in a child’s development to be identifying delays – empowering parents requires trusting relationships mediated by professional report and observation. Building a family’s capacity to claim for services takes time.</p>
<h2>How can we better support these children and their families?</h2>
<p>Timing for access to ECEI is pivotal to a child’s future learning outcomes. This means we need to change how we view those with late-onset difficulties. A reliance on medical evidence as an entry ticket to the NDIS does little to achieve social justice for these children.</p>
<p>Parents of any child identified with a developmental concern in preschool should consult with a GP or paediatrician. This will mean inevitably going on a waiting list. These waiting lists could further disadvantage children who are already at risk due to social factors, and further compromise their learning opportunities. It also discounts the validity of evidence from qualified early childhood educators. </p>
<p>Being on a waiting list does little to support a sensible outcome for all, especially socially-disadvantaged families. </p>
<p>Supporting documentation from early childhood educators must be repositioned and upgraded to empower vulnerable families to access early intervention services sooner rather than later.</p><img src="https://counter.theconversation.com/content/83296/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alison M Marchbank 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>Parents need support from early childhood educators to build capacity to claim for NDIS services.Alison M Marchbank, Honorary Fellow, Early Childhood Education., Charles Darwin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/796252017-07-26T01:52:36Z2017-07-26T01:52:36ZHelping your student with disabilities prepare for the future<figure><img src="https://images.theconversation.com/files/179682/original/file-20170725-30157-b1t0co.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Planning is important for any teen on their way to college – but for those with disabilities, it's absolutely imperative.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/ncvophotos/8547312501/">NCVO London</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p>Summer is a busy time for high school juniors. They’re getting ready to say goodbye to school as they know it and they’re researching colleges, visiting campuses and trying to figure out what college fits their needs.</p>
<p>Planning is an important part of this process, but for parents and guardians of students with disabilities, this is especially true.</p>
<p>As a professor and <a href="https://doi.org/10.1177/0014402915615884">researcher in special education</a>, I’ve worked with many students with disabilities transitioning to college. The ones who are typically most successful after high school are the ones who were prepared to be strong self-advocates, who could seek out needed services and supports, and who could manage the multiple demands of being independent. </p>
<p>These are all skills that can – and should – be taught at the middle and high school level. Whether it’s understanding your child’s disability and legal rights or figuring out what accommodations and study habits work best, preparation is key.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/179683/original/file-20170725-30152-14rqvcz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179683/original/file-20170725-30152-14rqvcz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=391&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179683/original/file-20170725-30152-14rqvcz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=391&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179683/original/file-20170725-30152-14rqvcz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=391&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179683/original/file-20170725-30152-14rqvcz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=491&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179683/original/file-20170725-30152-14rqvcz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=491&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179683/original/file-20170725-30152-14rqvcz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=491&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Campus tours are a part of many high school students’ planning process.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/washington-dc-usa-march-30-2016-400258873">Rob Crandall/Shutterstock.com</a></span>
</figcaption>
</figure>
<h2>A wide range of disabilities on college campuses</h2>
<p>According to a 2016 report by the United States Department of Education, approximately <a href="https://nces.ed.gov/fastfacts/display.asp?id=60">11 percent of all undergraduates</a> report having a disability – up from <a href="https://nces.ed.gov/pubs99/1999187.pdf">6 percent</a> almost two decades prior. Since nearly two-thirds of all students who received special education services in high school did not self-disclose their disability to a college, the actual number of students with disabilities on campuses <a href="https://nlts2.sri.com/reports/2011_09_02/nlts2_report_2011_09_02_ch2.pdf">is likely much higher</a>. </p>
<p>Most of these students have what are often called “nonvisible” disabilities, including learning disabilities, attention deficit/hyperactivity disorder and, increasingly, mental health disorders such as <a href="http://www.bu.edu/today/2016/mental-health-college-students/">anxiety or depression</a>.</p>
<p>Students with <a href="https://www.facultyfocus.com/articles/effective-classroom-management/teaching-college-students-with-autism-spectrum-disorders/">autism spectrum disorders</a> are also more often attending college than a decade ago. And on some campuses, programs are emerging for students with <a href="https://www.theatlantic.com/education/archive/2017/05/the-path-to-higher-education-with-an-intellectual-disability/524748/">intellectual disabilities</a>.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/179684/original/file-20170725-30152-wr6xwp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179684/original/file-20170725-30152-wr6xwp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=403&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179684/original/file-20170725-30152-wr6xwp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=403&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179684/original/file-20170725-30152-wr6xwp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=403&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179684/original/file-20170725-30152-wr6xwp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=506&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179684/original/file-20170725-30152-wr6xwp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=506&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179684/original/file-20170725-30152-wr6xwp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=506&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A student and instructor work on skills necessary for college success at the West Virginia Autism Training Center at Marshall University in Huntington, West Virginia.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/AP-A-WV-USA-College-Autism/86853eb874d541cd9e2a6009525ef3e3/9/0">AP Photo/Jeff Gentner</a></span>
</figcaption>
</figure>
<h2>A change in legal status</h2>
<p>Many of these students receive special education services during some (or all) of their kindergarten through 12th grade school years. </p>
<p>For many, these services are provided under the Individuals with Disabilities Education Act of 2004 (<a href="http://www.wrightslaw.com/idea/law.htm">IDEA</a>). The IDEA requires a free and appropriate education, in the least restrictive environment, that meets the individual needs of students. A team of professionals work with the student’s family or guardians to develop an Individualized Education Program (IEP). The IEP outlines the student’s strengths and needs, sets annual goals and determines what modifications might be required to help the student meet those goals.</p>
<p>Other students with disabilities don’t need IDEA. They qualify for services under <a href="https://www2.ed.gov/policy/rights/reg/ocr/edlite-34cfr104.html#D">Subpart D</a> of <a href="http://www.wrightslaw.com/info/sec504.index.htm">Section 504</a> of the Rehabilitation Act of 1973, which is a civil rights law (not a special education law) that prohibits discrimination on the basis of disability.</p>
<p>However, in both of these cases, services end at graduation. Special education services and individualized support and instruction required by the IDEA are not available in college.</p>
<p>At the college level, students with disabilities may be covered under a different part of the Rehabilitation Act. (Subpart D of Section 504 covers K-12, while <a href="https://www2.ed.gov/policy/rights/reg/ocr/edlite-34cfr104.html#E">Subpart E</a> covers post-secondary.) Subpart E protects college students with disabilities against discrimination and requires that they be provided equal access to all aspects of the academic program and facilities – provided that the student gains admission into college and maintains eligibility to remain enrolled, without consideration of their disability.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/179686/original/file-20170725-30103-1vqq68c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179686/original/file-20170725-30103-1vqq68c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179686/original/file-20170725-30103-1vqq68c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179686/original/file-20170725-30103-1vqq68c.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179686/original/file-20170725-30103-1vqq68c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179686/original/file-20170725-30103-1vqq68c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179686/original/file-20170725-30103-1vqq68c.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">
<figcaption>
<span class="caption">President George W. Bush signs the Individuals with Disabilities Education Improvement Act in 2004.</span>
<span class="attribution"><a class="source" href="https://georgewbush-whitehouse.archives.gov/news/releases/2004/12/images/20041203-6_la6g1658jpg-515h.html">White House photo by Tina Hager</a></span>
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<p>If admitted, and if the student would like to receive accommodations, they must seek out disability services and provide the college with required information about the nature of the disability and how it impacts access to the physical environment or to learning. Often called “<a href="https://www2.ed.gov/about/offices/list/ocr/letters/parent-20070316.html">documentation</a>,” the specific requirements vary based upon disability type and, often, the college that the student attends.</p>
<p>It’s important to note that it’s the <a href="https://eric.ed.gov/?id=EJ1107472">student’s choice</a> to seek out and to use services at the college level. But it’s also important to know that students must self-identify as having a disability or else they’re not eligible for services – the college does not need to seek students out.</p>
<h2>How families can prepare</h2>
<p>There are several things that families can do to get ready for life after high school. The list below is by no means exhaustive. Each student with a disability has unique needs and questions that should be addressed.</p>
<p>In general, however, students and their families should:</p>
<p>• Learn more about the disability and the student’s unique characteristics. When leaving high school, the student should understand his or her own strengths, preferences and weaknesses – to be able to self-advocate, to use and adjust learning strategies that work for him or her, and to independently make life choices.</p>
<p>• Become active in the IEP or Section 504 process and be active members of the team that develops and monitors the individualized plan. Students are often left out of this process, but <a href="https://doi.org/10.1177/1053451208314910">should be included</a> as early as is appropriate and to the greatest extent possible, based on the student’s skills. </p>
<p>• Learn about accommodation needs. Students and families can work with individual teachers to request and set these up. High school is a great time for a student to learn how to monitor what’s useful and what’s not. Learning which accommodations are really needed will be an important skill in college or work life. </p>
<p>• Transition away from any modifications to instruction, tests or grading, and focus on the use of learning strategies. Changes to teaching methods and tests are generally not provided after high school. </p>
<p>• Work on time management skills. The college day is much less structured than the high school day. This creates many exciting opportunities for students, but also challenges. Students need to be prepared to productively and independently handle this free time.</p>
<p>• Research the disability supports offered at different colleges. Section 504 only requires colleges to ensure access and prohibit discrimination, but many colleges provide more extensive services and supports. This may affect what colleges you want to visit or apply to.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/179687/original/file-20170725-30108-56bpyh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179687/original/file-20170725-30108-56bpyh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=461&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179687/original/file-20170725-30108-56bpyh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=461&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179687/original/file-20170725-30108-56bpyh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=461&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179687/original/file-20170725-30108-56bpyh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=580&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179687/original/file-20170725-30108-56bpyh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=580&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179687/original/file-20170725-30108-56bpyh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=580&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Parents can help their children practice good study habits and time management that will greatly improve disabled students’ chances when they’re on their own.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/mother-overlooks-her-teenaged-son-uses-656248012">Creatista/Shutterstock.com</a></span>
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<h2>An exciting option</h2>
<p>Once you know what life after high school will bring, there’s even more you can do to prepare: Learn about the documentation requirements for the college you’ve chosen, get in touch with disability services and talk about needed accommodations and supports, and if appropriate for a student, think about transportation needs and access to medication or doctors.</p>
<p>But the most important thing is to simply start looking forward to the challenge ahead of you. College presents an exciting and viable option for students with disabilities. With preparation in high school (and knowing <a href="http://theconversation.com/how-to-succeed-in-college-with-a-disability-79226">what to do when you actually arrive</a> on campus) students with disabilities can succeed in college – or in whatever life after high school they choose.</p><img src="https://counter.theconversation.com/content/79625/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Joseph Madaus receives funding from the Connecticut State Department of Education; the United States Department of Education. </span></em></p>Numerous measures are in place to help young disabled children thrive, but the transition beyond school can be a difficult one. Here are some tips for families to help their children prepare for life beyond.Joseph Madaus, Professor of Education, Associate Dean for Academic Affairs, University of ConnecticutLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/811572017-07-25T19:01:55Z2017-07-25T19:01:55ZLearning disabilities do not define us<figure><img src="https://images.theconversation.com/files/179518/original/file-20170724-11166-1dhg9w2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Though challenges like dyslexia can make learning difficult, these disabilities shouldn't define who you are – or what you can do.</span> <span class="attribution"><a class="source" href="https://flic.kr/p/pdkvf1">Tim Kwee</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc/4.0/">CC BY-NC</a></span></figcaption></figure><p>I am an educator of educators. I teach others how to be the best teachers. But, I’m also different. </p>
<p>I have learning challenges.</p>
<p>As we celebrate the <a href="http://www.adaanniversary.org/">anniversary of the Americans with Disabilities Act (ADA)</a>, I’m reminded of my personal journey. </p>
<p>My disabilities could have defined me. But they did not. I don’t consider myself dyslexic or learning-disabled. </p>
<p>I am Jim. And here’s the story of how I overcame my challenges and found my life’s calling – and of the dedicated educators who helped me along the way.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/178906/original/file-20170719-13593-fm4oo1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/178906/original/file-20170719-13593-fm4oo1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=411&fit=crop&dpr=1 600w, https://images.theconversation.com/files/178906/original/file-20170719-13593-fm4oo1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=411&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/178906/original/file-20170719-13593-fm4oo1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=411&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/178906/original/file-20170719-13593-fm4oo1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=517&fit=crop&dpr=1 754w, https://images.theconversation.com/files/178906/original/file-20170719-13593-fm4oo1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=517&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/178906/original/file-20170719-13593-fm4oo1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=517&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">This year the Americans with Disabilities Act celebrates its 27th anniversary.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/PGroup-Rainmaker-Photo-MediaPunch-MediaPunch-IP-/ce87a1b0e6db4dc9b217445f7d7f6718/1/0">Rainmaker Photo/MediaPunch/IPX/AP Photo</a></span>
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<h2>My disability</h2>
<p>Born in 1970, I suffered a head injury as a young boy while roughhousing with friends. Maybe that led to my learning problems. Maybe it didn’t. Doctors aren’t really sure. </p>
<p>What I do know for sure is that in kindergarten, I couldn’t spell my name: James. That’s when I became Jim. Over a period of time, I turned Jim into Mij. </p>
<p>I didn’t like school. I decided it was about one thing: learning to read and write. I was poor at both.</p>
<p>I didn’t like myself. </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/89574/original/image-20150723-22852-x5bwpe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/89574/original/image-20150723-22852-x5bwpe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=873&fit=crop&dpr=1 600w, https://images.theconversation.com/files/89574/original/image-20150723-22852-x5bwpe.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=873&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/89574/original/image-20150723-22852-x5bwpe.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=873&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/89574/original/image-20150723-22852-x5bwpe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1097&fit=crop&dpr=1 754w, https://images.theconversation.com/files/89574/original/image-20150723-22852-x5bwpe.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1097&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/89574/original/image-20150723-22852-x5bwpe.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1097&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">James Gentry, the author, in second grade.</span>
<span class="attribution"><a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>At the age of six, I was diagnosed with dyslexia or a minimal brain dysfunction with learning disabilities. At the time, awareness about dyslexia was so poor that my mother asked, “Is it contagious?” </p>
<p>Then something changed. </p>
<p>In 1975, Congress passed <a href="http://www2.ed.gov/about/offices/list/osers/idea35/history/index_pg10.html">Public Law 94-142</a>, now known as the Individuals with Disabilities Education Act (IDEA). This law provided special education services for all students with disabilities.</p>
<p>A breed of new educators – called special education teachers – came to my school in East Texas. They developed a curriculum tailored just for kids like me. The curriculum provided reading and writing experiences using specialized learning strategies. My teachers helped me learn to read books by looking at pictures, acting out stories and reading text.</p>
<h2>Left, right, tar</h2>
<p>A crucial event occurred in my second year of first grade that helped crystallize the visual cues I was being trained to see.</p>
<p>It was the summer of 1977. The roads of my small town were being resurfaced with asphalt and tar and I did what any inquisitive young boy would do: I stepped right into the middle of the warm, gooey stuff.</p>
<p>Predictably, it stuck to the side of one of my shoes. </p>
<p>The next morning, I lined up the shoes so they stuck together perfectly. Next, I slid my feet into the correct left and right shoes.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/179503/original/file-20170724-16930-1tbvdop.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/179503/original/file-20170724-16930-1tbvdop.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/179503/original/file-20170724-16930-1tbvdop.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=653&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179503/original/file-20170724-16930-1tbvdop.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=653&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179503/original/file-20170724-16930-1tbvdop.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=653&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179503/original/file-20170724-16930-1tbvdop.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=821&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179503/original/file-20170724-16930-1tbvdop.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=821&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179503/original/file-20170724-16930-1tbvdop.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=821&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">In the ‘70’s, they didn’t have cute stickers to help me figure out which shoe was which.</span>
<span class="attribution"><a class="source" href="http://shoezooz.com/">Shoezooz</a>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>I was elated.</p>
<p>For the first time, I was able to place my shoes on the right feet using that sticky tar as visual and <a href="http://vark-learn.com/strategies/kinesthetic-strategies/">kinesthetic</a> cues that my teachers had taught me. I was independent.</p>
<p>This was the beginning of understanding visual cues to learn to read, write and tell left from right. Even though it still took a while, I learned to make the connections.</p>
<p>For instance, when one of my teachers told me I needed to write on the correct side, I still didn’t understand. I asked, “What’s the correct side?” She said, “Write from left to right.” </p>
<p>I asked what are left and right. She took my paper, moved the holes of the paper to one side of my desk and said, “The holes face this way, left.”</p>
<p>I looked in that direction and saw these huge windows. </p>
<p>I still remember thinking, “This is like my shoes and that tar.” I knew it was unlikely the windows would move, so every time I began to write, I moved the holes of my paper toward the windows. </p>
<p>I learned to adjust to my visual landmarks if my desk moved by asking people what was my left. </p>
<p>I never wrote on the wrong side again.</p>
<h2>Legs, loops, letters</h2>
<p>Once I understood spatial relationships, I made new discoveries with letters and numbers, finding that some have “legs” and “loops” that faced the holes in the notebook paper while others faced in the opposite direction. </p>
<p>For instance, letters and numbers like a, d, 7, 3, and Jj faced the holes, while Bb, L, Ee, Ff, and Cc faced away from the holes. There were confusing ones like Zz, 5, Ss, and 2 that had loops and legs that faced toward and faced away from the holes on the notebook paper. I had to memorize or review them each time.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/178908/original/file-20170719-13534-1i865tt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/178908/original/file-20170719-13534-1i865tt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=397&fit=crop&dpr=1 600w, https://images.theconversation.com/files/178908/original/file-20170719-13534-1i865tt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=397&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/178908/original/file-20170719-13534-1i865tt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=397&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/178908/original/file-20170719-13534-1i865tt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=499&fit=crop&dpr=1 754w, https://images.theconversation.com/files/178908/original/file-20170719-13534-1i865tt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=499&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/178908/original/file-20170719-13534-1i865tt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=499&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">For people with dyslexia, learning letters and numbers can require special strategies.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/learning-write-abc-384722392?src=qzm6n2uoLBzOgEteMvslJQ-1-4">Cmspic/shutterstock.com</a></span>
</figcaption>
</figure>
<p>As I learned to write, I learned to read better too. I could call some words out orally and use pictures to fill in the missing parts. </p>
<p>Using visual cues and working with my peers and teachers were the solutions to learning, reading and writing. Also, I could persuade peers to read to me, and piece the meaning together like a puzzle.</p>
<p>Later, using visual cues helped me play football and drive a car. And it all started with tar and some teachers holding my hand.</p>
<h2>College and beyond</h2>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/89577/original/image-20150723-22816-1gu63wn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/89577/original/image-20150723-22816-1gu63wn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=866&fit=crop&dpr=1 600w, https://images.theconversation.com/files/89577/original/image-20150723-22816-1gu63wn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=866&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/89577/original/image-20150723-22816-1gu63wn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=866&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/89577/original/image-20150723-22816-1gu63wn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1088&fit=crop&dpr=1 754w, https://images.theconversation.com/files/89577/original/image-20150723-22816-1gu63wn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1088&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/89577/original/image-20150723-22816-1gu63wn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1088&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The author, James Gentry, in his college graduation photo.</span>
<span class="attribution"><a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Learning with learning challenges is never easy. But higher education proved to be an even greater challenge. </p>
<p>Spelling often seemed to me to be an insurmountable challenge. Professors required me to type my papers, but the end result resembled patchwork drywall thanks to the amount of white correction tape I used to correct misspelled words. </p>
<p>That’s when I found something that was as life-changing as the tar-on-my-shoes experience: the invention and availability of the personal computer.</p>
<p>I purchased an IBM clone with a word processing program that would review and check spelling. Once I used the word processor to complete various written assignments for college, I was like a caveman who discovered fire. I could turn in clean documents without worrying about handwriting legibility or the letters facing the wrong direction. </p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/178910/original/file-20170719-26705-18bgi53.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/178910/original/file-20170719-26705-18bgi53.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/178910/original/file-20170719-26705-18bgi53.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/178910/original/file-20170719-26705-18bgi53.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/178910/original/file-20170719-26705-18bgi53.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/178910/original/file-20170719-26705-18bgi53.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/178910/original/file-20170719-26705-18bgi53.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 personal computer – with word processing and spellchecking software – helped me overcome dyslexia and become a writer.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/stiefkind/6981093960/">Wolfgang Stief</a></span>
</figcaption>
</figure>
<p>I was free. I could be a writer.</p>
<p>I completed my bachelor of science degree in psychology with a 4.0 grade point average. Later, while working as a schoolteacher, I completed my master’s degree in special education and my doctor of education degree in curriculum and instruction, again with a 4.0 grade point average.</p>
<h2>Making a difference</h2>
<p>I’m now a teacher. And as an associate professor at Tarleton State University, I work with students and their parents to focus on their abilities and not their disabilities – just like my teachers did.</p>
<p>And I still face the same learning challenges that I did as a young boy.</p>
<p>My experiences and challenges have enabled me to listen to my students more. I model every day the value of building relationships and collaborative learning. My school days taught me that learning occurs best when done together.</p>
<p>In 2016, the students at my university selected me as a speaker for <a href="https://www.youtube.com/watch?v=cyC-7e4MbJE">Tarleton’s “Last Lecture” speaker series</a>. I shared my story. I wanted our students with disabilities to know, “You are not alone!”</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/179517/original/file-20170724-24759-y54zds.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/179517/original/file-20170724-24759-y54zds.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179517/original/file-20170724-24759-y54zds.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179517/original/file-20170724-24759-y54zds.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179517/original/file-20170724-24759-y54zds.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179517/original/file-20170724-24759-y54zds.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179517/original/file-20170724-24759-y54zds.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179517/original/file-20170724-24759-y54zds.jpeg?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">In 2016, James Gentry was asked to deliver a lecture about his experiences as a disabled professor.</span>
<span class="attribution"><span class="source">Tarleton State University</span>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
</figcaption>
</figure>
<p>Since this speech, I’ve had numerous students and professors come up to me to describe various learning challenges they’ve endured for most of their lives. Many of them are still working to overcome these challenges today.</p>
<p>This experience has helped me to discover that we’re all working to do our best with the challenges we face. Hiding or ignoring learning challenges is lonely and sad. We all – humans, I mean – have challenges in common. If anything, sharing and overcoming them together is the new reality.</p>
<p>We’re all different, and that’s a good thing. Remember that you have something to offer the world: a thought, a story, a new way to do something or some creation that may change the world for the better. Please be brave and overcome that challenge. We need you. You belong. You’re not alone.</p>
<p>The <a href="http://dredf.org/advocacy/comparison.html">Americans with Disabilities Act</a> and the Individuals with Disabilities Education Act before it have given me and others like me the opportunity to thrive.</p>
<p>And what a difference that has made in our worlds.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/cyC-7e4MbJE?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
</figure>
<p><em>This is an updated version of an <a href="https://theconversation.com/my-disabilities-do-not-define-me-i-am-jim-45081">article</a> originally published on July 24, 2015.</em></p><img src="https://counter.theconversation.com/content/81157/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>James Gentry 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>The story of a six-year-old boy with dyslexia who, with support from friends and teachers, became a successful professor. Now he teaches teachers how to help children like him.James Gentry, Associate Professor, Tarleton State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/792262017-07-25T18:30:45Z2017-07-25T18:30:45ZHow to succeed in college with a disability<figure><img src="https://images.theconversation.com/files/179637/original/file-20170725-12396-1waslfk.jpeg?ixlib=rb-1.1.0&rect=3%2C0%2C2383%2C1321&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Whether you have a physical disability, mental illness or learning challenge, there are strategies to help you earn your degree.</span> <span class="attribution"><a class="source" href="https://www.pexels.com/photo/group-of-graduates-standing-inside-a-room-493436/">Stocksnap</a></span></figcaption></figure><p>If you’re entering college as a student with a disability, the first thing you should know is that you’re not alone. In a study of approximately 11,000 young adults with disabilities, nearly 20 percent were found to have <a href="https://nlts2.sri.com/reports/2011_09_02/">attended a four-year college or university</a> at some point after high school. </p>
<p>And, like all students, you should have a sense of pride in what the college experience can do for you: You’ve demonstrated self-determination in deciding to take classes, meet new friends and have many exciting experiences. What’s more, you and your family are making an important contribution to your future. Many studies show that success in college is an indicator of <a href="http://files.eric.ed.gov/fulltext/EJ896246.pdf">success in the work world</a>.</p>
<p>As a professor of education and program coordinator for special education, I teach first-year students and advise students throughout their undergraduate careers. Over my 12 years of teaching, I’ve seen some of the challenges that stand in the way of success for college students with special needs – many of which apply to nearly all students.</p>
<p>These challenges can prove daunting, but there are strategies that can help.</p>
<h2>Help your professor understand</h2>
<p>Often disabilities are hidden, but that just means that you can’t see them when you meet someone. Hidden or not, disabilities are real.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/179526/original/file-20170724-6656-1y96wbr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/179526/original/file-20170724-6656-1y96wbr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179526/original/file-20170724-6656-1y96wbr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=300&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179526/original/file-20170724-6656-1y96wbr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=300&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179526/original/file-20170724-6656-1y96wbr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=300&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179526/original/file-20170724-6656-1y96wbr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=377&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179526/original/file-20170724-6656-1y96wbr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=377&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179526/original/file-20170724-6656-1y96wbr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=377&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Don’t be afraid to talk to your professors and help them understand your disability.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/friends-working-discussion-meeting-sharing-ideas-422451733">Rawpixel/Shutterstock.com</a></span>
</figcaption>
</figure>
<p>Many professors <a href="http://files.eric.ed.gov/fulltext/EJ896246.pdf">don’t know very much about disability</a> or may not have had much experience making changes to their classes. Or perhaps it’s been a while since they’ve had a student with special needs in their classroom.</p>
<p>Providing some <a href="https://adata.org/faq/what-definition-disability-under-ada">websites</a> or <a href="http://idea.ed.gov/explore/home.html">simple readings</a> may be helpful. </p>
<p>The important thing is to help your professor understand that you’re not trying to get by with easier work. Instead, you want them to see that your accommodations are there so that you can be successful. Communicate to them that you’re willing to work hard and put in the extra time that’s necessary to master the content. </p>
<p>In my experience, faculty can be very supportive – and your best advocates at college. Know that they’re going to be your mentors and the ones to help you find internships and even jobs. They’re going to be the ones writing your recommendation letters in the future. </p>
<h2>Get the most out of class</h2>
<p>Just like every other college student, you want to get the most out of every class. </p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/179527/original/file-20170724-24759-1l814rn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/179527/original/file-20170724-24759-1l814rn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/179527/original/file-20170724-24759-1l814rn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=900&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179527/original/file-20170724-24759-1l814rn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=900&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179527/original/file-20170724-24759-1l814rn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=900&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179527/original/file-20170724-24759-1l814rn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1130&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179527/original/file-20170724-24759-1l814rn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1130&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179527/original/file-20170724-24759-1l814rn.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">You’ll need to figure out the best study habits for each class.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/disabled-young-man-sitting-wheelchair-using-139937536">Stokkete/Shutterstock.com</a></span>
</figcaption>
</figure>
<p>This particular aspect of college may be more difficult if you have a learning disability. According to special education researcher <a href="http://www.hunter.cuny.edu/school-of-education/departments/special-education/faculty/david-j-connor">David J. Conner</a>, some students “face <a href="http://dx.doi.org/10.1080/09518398.2011.590158">greater difficulties than their nondisabled counterparts</a> in: concentrating on the task at hand, determining the saliency of information presented in class, applying test strategies, and managing time.”</p>
<p>Get yourself prepared. Think about how you’re going to deal with the daily, weekly and long-term reading and assignments in your courses.</p>
<p>Remember that each of your classes requires its own set of skills and study habits. Don’t think that the same study habits are going to work for a philosophy course that work for a math course.</p>
<h2>Find academic and social support</h2>
<p>Often freshmen with special needs <a href="https://eric.ed.gov/?id=EJ1107472">don’t seek out academic support</a> through their university’s disability services. They see acknowledging disability as a stigma or are sometimes reluctant to accept their disability. Rather than seeing support as something to be ashamed of, understand that it’s a way of <a href="https://www.researchgate.net/publication/292366922_Requesting_classroom_accommodations_Self-advocacy_and_conflict_resolution_training_for_college_students_with_disabilities">demonstrating that you can succeed</a> – and that you know how to succeed.</p>
<p>Disability services on your campus are there for you. Whether it’s part of the office of student life, a dean’s office or a dedicated office, someone on-campus is charged with meeting accommodations. Make an appointment in your early days on campus, before you get too far into the semester and the support you need isn’t there. Though it’s not always an official practice, ask them if you might be given a <a href="http://dx.doi.org/10.1177%2F004005991204400502">senior student mentor</a> who can answer your questions or even act as an advocate.</p>
<p>The other side to this equation is your personal support group. Many college students find that a special “group” gives a sense of belonging on the campus – something that’s <a href="https://doi.org/10.1353/csd.2015.0072">especially important</a> if your disability makes you feel like an outsider. Find a group of friends that can help you as you negotiate your early days of being on campus. For all students, this can also be a great way to <a href="https://doi.org/10.14204/ejrep.35.14053">reduce stress</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/179530/original/file-20170724-5139-kg5enr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/179530/original/file-20170724-5139-kg5enr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179530/original/file-20170724-5139-kg5enr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179530/original/file-20170724-5139-kg5enr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179530/original/file-20170724-5139-kg5enr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179530/original/file-20170724-5139-kg5enr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179530/original/file-20170724-5139-kg5enr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179530/original/file-20170724-5139-kg5enr.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">Participating in activities (like theatrical productions) can provide you with social support.</span>
<span class="attribution"><a class="source" href="https://flic.kr/p/U4SZ9W">UIS Theatre</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
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<p>Most colleges have an organization fair at the beginning of the year; attend that to find out what you might be interested in. You might not have ever had an interest before in that particular area, but consider trying something out of your comfort zone.</p>
<h2>Find and pursue your major</h2>
<p>As you choose and take your classes, remember to be keeping in mind the bigger picture. You don’t have to know what you want to do right away; many of your colleagues who don’t have special needs are undecided on their majors too. But that doesn’t mean you shouldn’t start the process.</p>
<p>Some people make jokes about <a href="http://www.slu.edu/beabilliken/quiz-college-majors">interest</a> <a href="http://www.luc.edu/undergrad/academiclife/whatsmymajorquiz/">surveys</a>, but they can be helpful in directing the thinking process around your future career.</p>
<p>Here are some other helpful questions that any student – special needs or not – can consider: What do I think I could do? What have I had success in before? Are the skills being taught in this course the same types of skills that I have? What do my friends or mentors say I’m good at?</p>
<p>The most important thing to remember is that college is a doorway, and once you go through, you’re going to find a lot of great opportunities. Support is there on the college campus, but you have to do your part to find it. Be patient with yourself, but don’t forget to push yourself, too.</p><img src="https://counter.theconversation.com/content/79226/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Stephen Byrd 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>For many disabled students, college is the first time that they’re put to the test of making their own way. The experience can be challenging, but there are strategies to help ease the way.Stephen Byrd, Associate Professor of Education, Elon UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/814262017-07-24T18:25:33Z2017-07-24T18:25:33ZFulfilling the promise of the Americans with Disabilities Act<figure><img src="https://images.theconversation.com/files/179307/original/file-20170722-28465-tvrm21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The ADA helped make college possible for disabled students like freshman Christopher Rhoades.</span> <span class="attribution"><span class="source">AP Photo/Chris O'Meara</span></span></figcaption></figure><p>In July 1990, President George H. W. Bush signed the Americans with Disabilities Act (ADA) into law in an action that “<a href="https://doi.org/10.1001/jama.2015.6405">gave voice to the nation’s highest ideals</a>.”</p>
<p>As we celebrate 27 years of ADA, we can see the significance of this law. It has challenged discrimination and helped remove many barriers so that <a href="http://www.census.gov/people/disability/publications/sipp2010.html">roughly 56.7 million Americans</a> with disabilities can lead independent lives.</p>
<p>But it’s important to note that the promise of ADA cannot be fulfilled unless those without disabilities act on its “clear, strong, consistent and <a href="https://www.ada.gov/pubs/adastatute08.htm#12101b">enforceable standards</a>.” </p>
<p>I’ve certainly observed this to be the case on college campuses. In <a href="https://education.ufl.edu/faculty/crockett-jean/">my work as a special educator</a>, I have observed how students, faculty and administrators are helping to fulfill this promise by sponsoring inclusive organizations, teaching to specific learning needs and making campus policies more equitable.</p>
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<a href="https://images.theconversation.com/files/179306/original/file-20170722-29742-1f8ijdh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/179306/original/file-20170722-29742-1f8ijdh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179306/original/file-20170722-29742-1f8ijdh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=518&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179306/original/file-20170722-29742-1f8ijdh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=518&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179306/original/file-20170722-29742-1f8ijdh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=518&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179306/original/file-20170722-29742-1f8ijdh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=650&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179306/original/file-20170722-29742-1f8ijdh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=650&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179306/original/file-20170722-29742-1f8ijdh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=650&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">President H. W. Bush signed the Americans with Disabilities Act on the White House South Lawn on July 26, 1990.</span>
<span class="attribution"><span class="source">AP Photo/Barry Thumma</span></span>
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<h2>A proclamation of emancipation</h2>
<p>The ADA was introduced to ensure that people with disabilities get equal opportunities to fully participate in all aspects of community life, to live independently and to achieve economic self-sufficiency. </p>
<p>The ADA builds on <a href="https://doi.org/10.5014/ajot.46.5.397">20 years of disability-specific legislation</a> to eliminate the historic and pervasive isolation and segregation of Americans with disabilities. Before that, they were viewed as objects of pity, unable to work, go to school or live on their own.</p>
<p>The ADA <a href="https://doi.org/10.1001/jama.2015.4936">altered this view</a> by making buildings, transportation and services adapt so that people with disabilities could participate. </p>
<p>Former Senator Tom Harkin, the chief sponsor of the ADA in Congress, <a href="http://articles.latimes.com/1990-02-07/entertainment/ca-81_1_disabled-people">referred to the law</a> as the “20th century emancipation proclamation for people with disabilities.”</p>
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<a href="https://images.theconversation.com/files/179311/original/file-20170722-28515-ebiu3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/179311/original/file-20170722-28515-ebiu3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/179311/original/file-20170722-28515-ebiu3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=773&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179311/original/file-20170722-28515-ebiu3t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=773&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179311/original/file-20170722-28515-ebiu3t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=773&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179311/original/file-20170722-28515-ebiu3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=972&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179311/original/file-20170722-28515-ebiu3t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=972&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179311/original/file-20170722-28515-ebiu3t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=972&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">As President of the United States from 1933-1945, FDR often hid his disability in order to avoid the associated stigma.</span>
<span class="attribution"><a class="source" href="https://flic.kr/p/2jc68">D. B. King</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
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<p>In 2008, <a href="https://www.eeoc.gov/laws/statutes/adaaa.cfm">new amendments to the ADA</a> broadened the definition of a disability, extending protections to individuals with substantial limitations in a variety of major life activities – including reading, concentrating and working.</p>
<p>The amendments also extended protections to those using a variety of supports such as cochlear implants, hearing aids and prosthetics.</p>
<h2>What has changed on campus</h2>
<p>About <a href="https://nces.ed.gov/fastfacts/display.asp?id=60">11 percent</a> of undergraduates in the U.S. have documented disabilities, including dyslexia, Attention Deficit/Hyperactivity Disorder (ADD/ADHD), sensory and mobility issues, mental illness, and health impairments.</p>
<p>Full-time enrollment of disabled students <a href="https://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2011018">grew by 45 percent</a> between 2000 and 2010. Part-time enrollment grew by 26 percent. There are also about <a href="http://eric.ed.gov/?id=EJ1004364">250,000 higher education faculty members</a> who have disabilities. </p>
<p>I see the impact of the ADA every day on our campus: students and faculty using wheelchairs, accessible e-readers for those with low vision, sign language interpreters and other technologies that allow people to learn and to work. </p>
<p>As an instructor, I get help from the campus disability resource center to make sure I provide reasonable instructional accommodations in my classes (such as repeating or clarifying directions or providing a note-taker) to students who need them. </p>
<p>Today’s undergraduates grew up in a post-ADA world where people with disabilities are expected to be included in – not segregated from – campus life. Many attended elementary and secondary schools alongside students with disabilities.</p>
<p>College leaders use principles of universal design to <a href="https://doi.org/10.1002/aehe.20011">prevent discrimination</a> against students and employees. Universal design makes things accessible and desirable to as many people as possible. (For example, curb-cuts in the sidewalk were made for wheelchair users, but are used by everyone.)</p>
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<p>Universal design informs architects planning out <a href="http://www.nxtbook.com/nxtbooks/acuho/journal_vol39no2/index.php?startid=135#/160">dormitories, classrooms and labs</a>. It also impacts the design of <a href="https://doi.org/10.1002/aehe.20011">curriculum materials and teaching methods</a>, which can encourage students to participate and respond to instruction in a variety of ways.</p>
<p>Programs in disability education and disability studies can <a href="https://doi.org/10.1002/aehe.20011">promote campus awareness</a> about the experiences of people with disabilities. Many universities offer courses that can help reduce the stigma still associated with disabilities. </p>
<p>On my campus at the University of Florida, students from different fields, including business, design, engineering, nursing, education, pre-law and medicine, enroll in the Disabilities in Society minor so they’ll be prepared to interact successfully with future coworkers, customers and neighbors with disabilities. </p>
<h2>The way forward</h2>
<p>Despite 27 years of advocacy, equity and inclusion are still out of reach for many Americans with disabilities. More needs to be done to fulfill the promise of the law. </p>
<p>The disturbing fact is that <a href="http://files.eric.ed.gov/fulltext/ED520976.pdf">students with disabilities</a> tend to leave school after two years and graduate at half the rate of their classmates. They’re also employed at <a href="https://www.census.gov/content/dam/Census/library/publications/2012/demo/p70-131.pdf">half the rate</a> of workers their own age who do not have disabilities.</p>
<p>In short, the ADA is not just about people with disabilities; it’s about <a href="https://doi.org/10.1002/aehe.20011">society at large</a>. Ensuring equity, access and inclusion is a shared responsibility.</p>
<p><em>This is an updated version of <a href="https://theconversation.com/how-can-we-fulfill-the-promise-of-the-americans-with-disabilities-act-45200">an article</a> originally published on July 26, 2015.</em></p><img src="https://counter.theconversation.com/content/81426/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jean Crockett has received funding from the US Department of Education. She is affiliated as a volunteer with The Viscardi Center, a non-profit organization in Albertson, NY.</span></em></p>The Americans with Disabilities Act turns 27 this year. But true equality is still out of reach for many – and it’s everyone’s responsibility to fulfill the promise of the law.Jean Crockett, Professor of Special Education, University of FloridaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/756932017-04-18T05:18:22Z2017-04-18T05:18:22ZNDIS hiccups are expected, as with any large-scale social reform<figure><img src="https://images.theconversation.com/files/165534/original/image-20170418-32723-q1w8h4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The NDIS rollout has been plagued with issues from the start.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p>The agreement to launch the National Disability Insurance Scheme (NDIS) in 2012 was met with <a href="http://www.abc.net.au/news/2012-07-31/madden-ndis/4166250">great excitement</a>. It also came with large expectations about the transformation this would bring in terms of services and outcomes for people with disability. </p>
<p>Disability services were widely recognised to be in a <a href="http://www.pc.gov.au/inquiries/current/ndis-costs/issues/ndis-costs-issues.pdf">parlous state</a> and there was bipartisan support for the development of a national scheme that would address their identified inadequacies. In recent months, this enthusiasm and excitement has been replaced by a more critical discourse. National rollout of the scheme began last year, but already there have been reports of the NDIS being “<a href="http://www.abc.net.au/news/2017-03-12/ndis-rollout-plagued-with-problems-foi-documents-reveal/8346892">plagued with problems</a>”.</p>
<p>However, one of the problems with judging success and failure is that they often look the same part way through. We shouldn’t be surprised that such a huge reform process is encountering challenges in the implementation process and these issues don’t mean that the NDIS is failing overall.</p>
<h2>Problems with the scheme</h2>
<p>The <a href="https://www.ndis.gov.au/participant-portal-user-guide">online portal</a> that facilitates payments to providers received extensive <a href="http://www.abc.net.au/news/2016-08-10/ndis-providers-entering-their-eighth-week-without-payment/7711754">critical attention</a> for delays and technical glitches. In November 2016, the NDIS was criticised for <a href="http://www.abc.net.au/news/2016-11-14/ndis-struggling-to-meet-target-quarterly-report-shows/8022196">struggling to meet enrolment targets</a>. From July to September 2016, only 7,440 people were enrolled in the scheme instead of the targeted 20,264.</p>
<p>This problem was rectified in the next three months, when 26,000 people signed up to the scheme. But in return, there was <a href="http://www.abc.net.au/news/2017-03-03/ndis-enrolments-surging-despite-difficulties-accessing-plans/8321232">criticism</a> this had been at the expense of the <a href="http://www.theage.com.au/victoria/its-like-a-fiveyearold-wrote-it-disability-advocates-slam-ndis-care-plans-20161026-gsbsdm.html">quality of the planning process</a>. </p>
<p>Then came concerns about a <a href="http://www.abc.net.au/news/2017-01-20/national-disability-insurance-scheme-government-announces-review/8198574">potential cost blowout</a> due to the increased prevalence of autism, debates over <a href="http://www.abc.net.au/news/2015-05-31/ndis-confusion-victoria-state-federal-government-agreement/6506840">state and federal responsibilities</a> and reported <a href="http://www.abc.net.au/news/2017-02-25/ndis-report-warns-major-cities-not-prepared-for-implementation/8303276">workforce shortages</a>. Due to this, the Productivity Commission was asked to undertake an <a href="http://www.abc.net.au/news/2017-01-20/national-disability-insurance-scheme-government-announces-review/8198574">independent review</a> into the overall costs of the scheme, its value for money and long-term sustainability.</p>
<p>Recently we have seen extensive reporting on the failures of the scheme and concerns that the various pressures on it might be <a href="http://www.theaustralian.com.au/opinion/editorials/time-to-make-the-ndis-workable-and-affordable/news-story/f4575a0570ce875249c3526b2cc7768c">overwhelming</a>. There also seems to be agreement from some quarters that the implementation of the NDIS is <a href="http://www.theaustralian.com.au/news/inquirer/monster-that-ate-the-national-disability-insurance-scheme/news-story/92b7c5e7b5719290741966c9b1983500">failing</a>.</p>
<p>By 2020 the NDIS is expected to have around 460,000 participants at a cost of A$22 billion. It should empower people with disability and their families and support individuals to participate more fully in society and the economy.</p>
<p>Such a process involves massive changes to several areas. These include who delivers services and how; power relationships between people with disability, their families and service providers; and the involvement of people with disability in Australian economic and social life.</p>
<p>This vast reform is being implemented at <a href="https://theconversation.com/four-lessons-the-ndis-must-heed-to-avoid-a-pink-batts-disaster-35385">break-neck speed</a>. Different levels of government are rushing to divest themselves of the provision of disability services, create a market for disability services and individualise services all at the same time. </p>
<h2>Historical comparisons</h2>
<p>England embarked on a similar reform process a few decades ago - although over far greater timescales. This started with the creation of a market for disability services in the 1980s, the introduction of direct payments in the late 1990s and the expansion of individual funding to all groups around <a href="http://pf7d7vi404s1dxh27mla5569.wpengine.netdna-cdn.com/files/2011/10/UKDPfinal.pdf">a decade later</a>. </p>
<p>Although these initiatives were developed over a period of nearly a quarter of a century, they still encountered a number of implementation challenges as they have been <a href="https://pure.york.ac.uk/portal/en/publications/the-evaluation-of-the-individual-budgets-pilot-projects-ibsen(1ac4b7b7-fc13-4d85-9153-50d784a616ee)/export.html">rolled out</a>. These include different levels of take up of these options across disability and age groups, reports of inadequate budgets and challenges in planning processes. </p>
<p>In some ways, the comparison to the English experience of implementing individual budgets is not a good one. In England, support for disability services remains focused around a small group of individuals. The development of the NDIS as a major new funding initiative required extensive support and as a result emphasised the potential benefits for the whole population. </p>
<p>The <a href="http://www.everyaustraliancounts.com.au/">Every Australian Counts</a> campaign argued people with disabilities should be treated as full citizens and made an appeal to universality. It argued that the NDIS was needed for “peace of mind” in the sense that everyone could be at risk of disability either directly or through a family member.</p>
<p>Many <a href="https://www.ndis.gov.au/chair-speech-reducing-inequality">have described the NDIS</a> as the largest social policy reform since Medicare.
So Medicare might be a better comparison than the disability reforms in England, and Medicare’s history is instructive in terms of the time it takes to achieve large-scale reform. Although today Medicare is relatively settled in the policy context and supported by the public, its history is more <a href="https://theconversation.com/explainer-what-is-medicare-and-how-does-it-work-22523">contentious</a>. </p>
<p>Medicare started in 1984, but an earlier version, Medibank, was introduced in 1975 after extensive political debate that even led to the <a href="https://www.whitlam.org/gough_whitlam/achievements/healthandsocialsecurity">double dissolution</a> of Parliament in 1974. </p>
<p>Medibank was abolished in 1981 and only reintroduced after a significant increase in those without health insurance. Other similar large-scale reform processes follow similar patterns. Change doesn’t come quickly and we need to be patient.</p>
<h2>Lessons to learn</h2>
<p>We are less than a year on from the roll-out of the NDIS nationally. Given the size and scale of this reform agenda we can’t expect to see change emerge overnight. Some of the current commentary around the scheme goes too far in making definitive statements about success and failure. We should expect some challenges to arise as the NDIS is implemented and this doesn’t mean that the idea is fundamentally flawed. </p>
<p>But having patience doesn’t mean ignoring these problems either. The government needs to ensure appropriate mechanisms are put in place to learn from issues as they arise. The scheme is certainly in need of <a href="http://www.theage.com.au/comment/cuts-to-the-22-billion-ndis-behemoth-would-cost-more-in-the-long-run-20170408-gvgy8k.html">refinement</a>, but we should not abandon this altogether given life prospects for those with disability are significantly worse than for the general population, and <a href="https://theconversation.com/is-australia-ready-to-give-people-with-disability-real-choice-and-control-over-services-50312">well below</a> those of other comparable nations.</p><img src="https://counter.theconversation.com/content/75693/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Helen Dickinson receives funding from NHMRC. </span></em></p>The NDIS roll-out has been criticised for many glitches, but that doesn’t mean the scheme is failing.Helen Dickinson, Associate Professor, Public Service Research Group, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/746922017-03-22T23:45:25Z2017-03-22T23:45:25ZNDIS housing rules for people with a disability could be life-changing<figure><img src="https://images.theconversation.com/files/161773/original/image-20170321-5397-1fjm5jc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Jonathan Bredin, a co-author of this article, at work.</span> <span class="attribution"><span class="source">Photo: Nathan Oxley</span>, <span class="license">Author provided</span></span></figcaption></figure><p>The National Disability Insurance Scheme (Specialist Disability Accommodation) <a href="https://www.legislation.gov.au/Series/F2017L00209">Rules</a> were tabled in federal parliament in mid-March. The new rules offer the possibility of an <a href="https://www.dss.gov.au/disability-and-carers/programs-services/government-international/national-disability-strategy-second-implementation-plan">inclusive Australian society</a> that enables those people with the highest disability-related support needs to have equal access to mainstream services including housing.</p>
<p>The <a href="https://www.legislation.gov.au/Details/F2017L00209/Download">rules and explanatory statement</a> detail the <a href="https://ndis.gov.au/about-us">National Disability Insurance Agency’s</a> proposed approach to specialist accommodation. The aim is to offer effective and efficient support for the 6% of NDIS participants identified with the most complex needs. </p>
<p>An estimated additional 127,000 NDIS participants will have an <a href="http://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/JNDIS-44th/NDIS_accommodation/Report/c02">unmet need for affordable housing</a>. This is seen as the responsibility of the <a href="http://www.coag.gov.au/sites/default/files/communique/NDIS%20-%20Principles%20to%20Determine%20Responsibilities%20NDIS%20and%20Other%20Service%20Systems%20-%20Revised%2027%20Nov%202015.pdf">mainstream housing system</a>.</p>
<p>NDIS participants who are deemed <a href="https://www.ndis.gov.au/document/specialist-disability-accommodation-fact">eligible for Specialist Disability Accommodation</a> now have an opportunity to look beyond traditional disability accommodation. Jono Bredin, a co-author of this article, says:</p>
<blockquote>
<p>It’s only been 12 months since I took the huge step of moving from living
with my parents to living in <a href="https://www.youtube.com/watch?v=feOHCbLfBTs&feature=youtu.be">my own smart technology-enabled unit</a>, co-located with five other units for people with disability and a hub of 24-hour shared support. I am so happy with where I live now. </p>
<p>I have gained so much confidence and motivation since I moved out of home. I used to live to go out to my work; now I have to work to live. I have started to go out more in the community on my own, trying out new clubs and pubs, paying for my own drinks and meeting new people. </p>
<p>The location of my home – close to accessible shops and transport, my work and family and friends – allows me to do the things I want when I want, but also gives me privacy and flexible, on-call support. But people in my age group are <a href="http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4102.0Main+Features30Dec+2010">very mobile</a>, most often moving because they have purchased a home, moved in with a partner, or wanted a bigger or better home. For me, these rules provide a next step in my thinking of a future housing career.</p>
</blockquote>
<h2>Opening up the housing options</h2>
<p>The rules build on an <a href="https://www.ndis.gov.au/SDA-pricing-payments">SDA pricing and payments framework</a> aimed at stimulating innovative, market-driven responses. This enables NDIS participants to consider a range of possible housing solutions and pathways. These might include a move towards home ownership, <a href="https://theconversation.com/shared-ownership-can-help-make-housing-affordable-for-people-with-disability-71549">shared equity</a>, or pooling resources to rent with friends. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/KLD8W9tAePg?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Pooling resources to rent with friends is one way to find suitable housing.</span></figcaption>
</figure>
<p>Where SDA is approved as a “<a href="https://www.ndis.gov.au/participants/reasonable-and-necessary-supports">reasonable and necessary</a>” support in an individual’s plan, the rules allow NDIS participants to consider <a href="https://www.ndis.gov.au/sda-enrolment">registering as their own housing provider</a>. This means they can secure a property that meets their needs and receive SDA payments that may help to service a loan. </p>
<p>This is a monumental shift for people with disability. Traditionally, they have been offered a restricted range of supported housing options beyond living with ageing parents, such as block-funded group homes or inappropriate placement in aged care. </p>
<p>Under the rules, the NDIS participant, as an SDA provider, can live with a partner and/or children and still receive SDA payments for their component of housing. However, if the participant chooses to live with their parents, he/she will not be eligible for SDA payments.</p>
<p>Importantly, the SDA <a href="https://www.ndis.gov.au/SDA-pricing-payments">benchmark prices</a> include minimum standards for new accommodation. The rules state that the provision of home modifications and assistive technologies is the responsibility of the SDA provider. </p>
<p>Thus, if a person wants to be their own SDA provider, they must factor the (often considerable) cost of providing specific <a href="https://theconversation.com/bringing-the-ndis-home-smarter-housing-design-for-people-with-disability-47690">accessibility features and integrated equipment</a> to the required standards, as well as changes that may be needed over time.</p>
<h2>Building in comprehensive support</h2>
<p>For any person, moving house or running a home (particularly for the first time) takes good planning, a time investment and skill development. For a person with disability, there are <a href="http://www.iscrr.com.au/__data/assets/pdf_file/0007/479032/311181334-061-Transition-to-supported-community-living.pdf">additional considerations</a> for <a href="https://www.cambridge.org/core/journals/brain-impairment/article/div-classtitleaccommodation-outcomes-and-transitions-following-community-based-intervention-for-individuals-with-acquired-brain-injurydiv/A571A7BE2360867BA5748AEE4C4D9C1C">accommodation transitions</a>.</p>
<p>Pleasingly, the SDA rules also point to work required beyond securing housing to ensure NDIS participants can participate in home and community life with the greatest possible choice and independence.</p>
<p>The rules note that suitable supports and pathways (as an alternative or in addition to SDA) may include <a href="https://www.ndis.gov.au/about-us/governance/IAC/iac-advice-capacity-building">capacity-building supports</a>, assistance with daily living, <a href="https://www.ndis.gov.au/Operational-Guideline/including-5">home modifications</a>, <a href="https://www.ndis.gov.au/providers/assistive-technology">assistive technologies</a>, or life transition planning. </p>
<p>This includes mentoring and <a href="http://www.disabilityloop.org.au/news/ndis_dsosdf.html">peer support</a>, focusing on individual skill development for the person with disability and their family. For many, the input of an experienced <a href="https://www.ndis.gov.au/participants/planning-process">planner</a> or <a href="https://www.ndis.gov.au/medias/zip/documents/h67/h49/8799410978846/Starting-my-NDIS-plan-with-a-Support-Coordinator-DOCX-202KB-.docx.">support co-ordinator</a> may be needed. </p>
<p>All these aspects need to be closely considered in the <a href="https://www.ndis.gov.au/participants/firstplan">NDIS planning phase</a>. Jono observes:</p>
<blockquote>
<p>When I first moved out from Mum and Dad, I had never made my own breakfast. Living on my own, I wanted to make sure I developed the skills to do as much as I could myself. I worked with occupational therapy students to plan out my kitchen set-up and think about the best equipment, so I can reach my crockery, microwave and food in my fridge and pantry to <a href="http://www.callingthebrainsbluff.com/my-house-jonathan-bredin/">make breakfast each day</a>. </p>
<p>I also knew that I would need to replace some of the support Mum and Dad provided me with other supports, like assistive technologies (hoist, electric bed and mobile shower chair), home automation and communication technologies, and paid supports. I can now control my environment myself using my Samsung tablet, and receive on-call staff support without having someone in my home at all times.</p>
</blockquote>
<p>The SDA rules highlight the monumental disability reform underway in Australia with the introduction of the NDIS. They also mark the need to ensure people with disability have the knowledge, planning input, skills and support co-ordination to make use of these rules and build housing pathways and choices <a href="http://www.ausstats.abs.gov.au/ausstats/subscriber.nsf/LookupAttach/4102.0Publication14.12.104/$File/41020_housingmobility2010.pdf">comparable to those of other Australians</a>. </p>
<hr>
<p><em>Jono Bredin (founder of <a href="http://www.callingthebrainsbluff.com/">Calling the Brain’s Bluff</a>) is a co-author of this article.</em></p><img src="https://counter.theconversation.com/content/74692/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Libby Callaway receives funding from the Department of Social Services and the Transport Accident Commission, via the Institute for Safety Compensation and Recovery Research. </span></em></p><p class="fine-print"><em><span>Kate Tregloan receives funding from the Department of Social Services and the Transport Accident Commission, via the Institute for Safety Compensation and Recovery Research.</span></em></p>New rules offer the possibility of an inclusive Australian society that enables people with the highest disability-related support needs to have equal access to mainstream services including housing.Libby Callaway, Senior Lecturer, Occupational Therapy Department, School of Primary and Allied Healthcare, Monash UniversityKate Tregloan, Senior Lecturer, Department of Architecture; Associate Dean Education, Monash Art Design & Architecture, Monash UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/638122016-08-21T20:03:43Z2016-08-21T20:03:43ZNew risks for disability care workers under the NDIS<p>While <a href="https://theconversation.com/reimagining-nsw-how-the-care-economy-could-help-unclog-our-cities-62970">the number of care jobs is growing</a>, cash-for-care systems such as <a href="https://theconversation.com/understanding-the-ndis-a-history-of-disability-welfare-from-deserving-poor-to-consumers-in-control-58069">the National Disability Insurance Scheme (NDIS)</a> are changing the organisation and nature of care and support jobs, with significant risks for workers.</p>
<p>Before the NDIS, the not-for-profit organisations that have provided most disability support services received block-funding from governments and were paid in advance to provide fairly standardised services to groups of people, often within institutions. </p>
<p>In the new individualised ‘cash-for-care’ NDIS, which is being rolled out nationally from July 1 2016, service provider organisations are subject to greater market forces. This means <a href="https://theconversation.com/understanding-the-ndis-the-challenges-disability-service-providers-face-in-a-market-based-system-57737">increased uncertainty for the employers</a> of disability support and care workers.</p>
<p>Individualisation means funding is allocated directly to consumers who can exercise choice and control over their services, including over the when, what and how of service provision. Some consumers will choose to directly engage their support workers, taking the traditional service provider organisations out of the picture altogether. </p>
<p>This is a major disruption to the labour market and to the nature of direct support and care jobs. </p>
<p>Under the NDIS, service provider organisations must compete with each other and with any new provider companies that choose to enter the market for the custom of each individual recipient of disability support funding. Organisations will receive payment only after services have been provided. </p>
<p>Service providers have to offer much more flexible supports to suit consumers’ preferences, as people with disability exercise choice to get the particular supports they want to meet their individual lifestyles, aspirations and needs.</p>
<p>For example, previously a person may have attended a specialist disability support day activity centre run by the disability services provider. Under the NDIS she might choose instead to have a support worker assist her to participate in a community-based craft class or to attend the local gym or swimming pool. These changes mean service providers must adapt to provide more diverse and variable services, at a wider range of times over the day and week and in many more locations. </p>
<p>The pressures on service providers to be competitive, flexible and responsive in the new market readily translate into <a href="http://disabilitysectorreport.nds.org.au/images/State-of-the-disability-sector-report-2015.pdf">pressures for more flexible working arrangements</a> for the frontline disability support services workforce.</p>
<p>This flexibility is likely to mean more fragmented working time and reductions in the working conditions of this highly feminised workforce. For example, employers are asking the Fair Work Commission for <a href="https://www.fwc.gov.au/documents/sites/awardsmodernfouryr/am2014285-sub-ja-010716.pdf">reduced minimum engagement periods</a>, that could see disability workers being engaged to work a single hour at a time. </p>
<p>Changes to shift arrangements could have disability support workers working multiple short periods in a single day with large gaps of time in between. <a href="http://www.flinders.edu.au/sabs/nils/publications/reports/who-works-in-community-services-a-profile-of-australian-workforces-in-child-protection-juvenile-justice-disability-services-and-general-community-services.cfm">These jobs are not highly paid</a> and the gendered undervaluation of support and care work due to its association with women’s unpaid care work has been widely acknowledged, including through <a href="http://jir.sagepub.com/content/54/3/377.short">the 2012 Social and Community Services Equal Remuneration decision</a>. Much care and support work is already short hours and the risk is that more of these jobs will become casual, with unpredictable working time and with workers unable to get enough work to make a living.</p>
<p>The NDIS, along with the introduction of individualised consumer-directed care <a href="http://www.myagedcare.gov.au/aged-care-services/home-care-packages/consumer-directed-care-cdc">in home care services for elderly people</a>, have also brought about a new demand for services to be provided by <a href="https://myplace.ndis.gov.au/ndisstorefront/providers/info-new-providers/becoming-self-employed-contractor.html">self-employed support and care workers</a>. </p>
<p>For an individual with disability who is managing their own funding, engaging a support worker as an independent contractor is likely to be much easier than becoming an employer with all the responsibilities that entails. However, self-employed contracting is in itself a form of employment in which low-paid workers can be highly vulnerable. Self-employed contractors take on individual responsibility for managing many of the risks of their employment and they have few of the protections and benefits of wage earners. </p>
<p>The ‘gig economy’, where consumers access services directly through technology platforms (think Uber), also might change the landscape for disability support and other care services. It could fuel a growth in the risky self-employed contracting form of employment.</p>
<p>There are a variety of new technology-based businesses in Australia’s disability services market already. While some are acting as employers of support workers, others have adopted the Uber model by simply providing matching services for consumers and support workers, <a href="https://theconversation.com/workers-are-taking-on-more-risk-in-the-gig-economy-61797">with workers left with all the risks of running their own businesses</a>. </p>
<p>The individualisation of social support and care is bringing much needed opportunities for control, choice and participation for people with disability. However, there is an urgent need to consider how to ensure the protection of care workers in this new system and provide them with <a href="http://www.ilo.org/global/topics/decent-work/lang--en/index.htm">decent work</a> in the future.</p><img src="https://counter.theconversation.com/content/63812/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Fiona Macdonald receives funding from the Australian Research Council for research on the workforce challenges of the NDIS. She is a voluntary non-executive director of the board of the Brotherhood of St Laurence.</span></em></p>The roll out of the NDIS means disability service providers and the people they employ are exposed to more market forces and this could result in protection for workers.Fiona Macdonald, Senior Research Fellow in Work & Employment Relations, RMIT UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/571242016-05-03T01:17:36Z2016-05-03T01:17:36ZTo get young people out of nursing homes, we need to back up the NDIS with housing – here’s how<figure><img src="https://images.theconversation.com/files/119783/original/image-20160422-4791-1eeiqz7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Living in supported smart technology homes is liberating for young people with disability who would otherwise be trapped in unsuitable nursing homes.</span> <span class="attribution"><span class="source">Fred Kroh/Summer Foundation</span>, <span class="license">Author provided</span></span></figcaption></figure><p>Young people with disability living in nursing homes are one of the most marginalised and isolated groups of people in our society. More than half of them, 53%, receive a visit from a friend less than once a year. They generally lead impoverished lives, characterised by loneliness and boredom.</p>
<p>These problems affect more than <a href="http://www.pc.gov.au/research/ongoing/report-on-government-services/2016/community-services/services-for-people-with-disability">6,200</a> people under the age of 65 who are stuck in nursing homes. Another 200 people under 50 are admitted to nursing homes each year. This is a serious social issue that can and must be fixed.</p>
<p>People under 65 living in nursing homes are eligible for funding through the <a href="http://www.ndis.gov.au">National Disability Insurance Scheme</a> (NDIS). The NDIS will provide crucial funding for the support that these people need to live in the community.</p>
<p>However, the NDIS cannot on its own stop the inappropriate placement of young people in nursing homes. More accessible and affordable housing needs to be built.</p>
<h2>Increasing the scale and range of housing</h2>
<p>Significant increases in the scale and range of housing for people with disability are urgently needed. For the past 20 years, the <a href="http://www.adhc.nsw.gov.au/individuals/support/somewhere_to_live/group_accommodation">group home</a> has been the dominant model, with people expected to live with five or more others. </p>
<p>While this may work for some, <a href="http://www.abc.net.au/news/2013-12-20/group-homes-for-people-with-disabilities/5169626">it is not for everyone</a>. Many young people in nursing homes acquire their disability as adults; some have partners or are parents. They want to live in their own homes.</p>
<p>There are housing solutions to get young people out of nursing homes. The Summer Foundation builds <a href="https://www.summerfoundation.org.au/what-we-do/housing/">housing demonstration projects</a> with apartments designed for people with disability peppered throughout larger residential developments. There is on-site space for workers to provide 24-hour on-call support. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/5DvjpQpBIpc?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The Summer Foundation uses smart home technology to support independent living for people with disabilities.</span></figcaption>
</figure>
<p>Apartments incorporate two-way communications and smart-home technology. Via smartphone or tablet, residents can operate lighting, blinds, cooling and heating, external doors and doorbell functions, as well as contacting support staff when needed. Residents are able to maximise their independence and privacy while still having access to 24-hour on-call support. </p>
<p>These projects aim to demonstrate that well-located, good-quality, accessible and adaptable housing, technology and support that foster independence result in increased quality of life and independence, and reduced lifetime care costs. You can read more about these projects in the Summer Foundation’s <a href="https://www.summerfoundation.org.au/wp-content/uploads/2015/nho_design_report.pdf">Design Insights report</a>.</p>
<h2>A new housing payments model</h2>
<p>The National Disability Insurance Agency (NDIA) has released a <a href="http://www.ndis.gov.au/news/sda-news">Specialist Disability Accommodation Position Paper on Draft Pricing and Payments</a>. This is the NDIA’s strategy to increase the long-term supply of housing for NDIS participants. It aims to foster the development of innovative housing solutions. </p>
<p>The policy outlined in this paper is designed to pay for the cost of housing for 28,000 NDIS participants with high support needs. The housing payment rates set by the NDIA cover the high costs of development and ongoing maintenance required by people with disability. </p>
<p>After decades of underinvestment, governments have made the funding available to replicate and scale a range of innovative housing and support options, such as the Summer Foundation apartments.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/119785/original/image-20160422-4777-g5ztlh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/119785/original/image-20160422-4777-g5ztlh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/119785/original/image-20160422-4777-g5ztlh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/119785/original/image-20160422-4777-g5ztlh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/119785/original/image-20160422-4777-g5ztlh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/119785/original/image-20160422-4777-g5ztlh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/119785/original/image-20160422-4777-g5ztlh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/119785/original/image-20160422-4777-g5ztlh.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">After decades of neglect, government funding and new financing models are leading to innovative housing options like these Melbourne apartments.</span>
<span class="attribution"><span class="source">Fred Kroh/Summer Foundation</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<h2>Managing vacancy risk</h2>
<p>One of the biggest challenges for the NDIA is balancing the critical need to give people with disability choice and control while giving investors as much certainty as possible. Without large-scale investment to dramatically increase the supply of accessible and affordable housing, NDIS participants will continue to have limited housing options and no choice because there will be no where to move to. </p>
<p>The NDIA’s proposed approach of attaching funding to participants so they can take it with them to any house makes sense in terms of maximising choice, control and outcomes. </p>
<p>However, withholding payments from housing providers if they can’t find a tenant (“vacancy risk”) creates uncertainty in the flow of income. This may affect housing providers’ ability to attract large-scale investment. Rather than the NDIA bearing the vacancy risk on new housing, the agency has adjusted the rate of return to reflect this risk. </p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/119786/original/image-20160422-4768-1vlexms.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/119786/original/image-20160422-4768-1vlexms.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/119786/original/image-20160422-4768-1vlexms.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=622&fit=crop&dpr=1 600w, https://images.theconversation.com/files/119786/original/image-20160422-4768-1vlexms.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=622&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/119786/original/image-20160422-4768-1vlexms.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=622&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/119786/original/image-20160422-4768-1vlexms.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=781&fit=crop&dpr=1 754w, https://images.theconversation.com/files/119786/original/image-20160422-4768-1vlexms.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=781&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/119786/original/image-20160422-4768-1vlexms.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=781&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 NDIA’s proposed housing model would give people with disability the basic tenancy rights that the rest of us take for granted.</span>
<span class="attribution"><span class="source">Fred Kroh/Summer Foundation</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>Given the unmet demand, housing providers bearing the vacancy risk is unlikely to be a barrier to financiers investing in new housing stock in major cities. This may not be the case in regional cities and towns due to higher uncertainty about occupancy. The NDIS may need a different approach to meeting the housing needs of NDIS participants outside major cities.</p>
<p>Under the NDIA’s proposal, people with disability will have the basic tenancy rights that the rest of us take for granted. </p>
<p>In the current system, a disability support provider typically owns a group home and provides the support. The NDIA is separating tenancy (bricks and mortar) from support, which means that people with disability will not have to move house if they want to change their disability support provider. This is very good news for people with disability.</p>
<h2>Promoting social investment</h2>
<p>The NDIA hopes to facilitate the development of new housing for more than 12,000 people with disability in the next ten years. However, the housing payments are only for NDIS participants with the most significant levels of disability. That will still leave an estimated <a href="https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=6&ved=0ahUKEwiGseycwqHMAhUKGZQKHXA4CUkQFgg3MAU&url=http%3A%2F%2Fwww.aph.gov.au%2FDocumentStore.ashx%3Fid%3De623e80c-6061-467f-aee6-0768380d5be6%26subId%3D410300&usg=AFQjCNFsy5WO-aWb4Rlhym--kShbv9l-bQ&cad=rja">35,000-55,000</a> NDIS participants with unmet housing needs.</p>
<p>Getting the NDIS housing payment and policy right will provide a unique opportunity to trial some innovative, transformative financing models that could be used to fund social housing for other disadvantaged people, including a broader group of people with disability.</p>
<p>Interest in social investment is growing in Australia, and the Summer Foundation is exploring <a href="https://www.summerfoundation.org.au/resources/social-finance-think-tank-report/">models for social finance</a>. However, there is a limited pipeline of projects and enterprises that are “investment-ready” and inherently scalable to make use of this capital. The federal government is providing leadership by developing an NDIS payments scheme that will enable new financial models to put this capital to good use. </p>
<p>For people with disability who have the highest need for support and accessibility, the NDIS housing payment will bridge the gap between what people with disability can reasonably afford and the cost of building highly accessible housing. This policy lays the foundation for developing the range and scale of housing needed to resolve the issue of young people in nursing homes in Australia. </p>
<p>The next step is for investors and the housing sector to come together and create the revolution in housing that young people in nursing homes have been waiting for.</p><img src="https://counter.theconversation.com/content/57124/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Di Winkler is the founder and CEO of the Summer Foundation.</span></em></p><p class="fine-print"><em><span>Luke Bo'sher worked on the design of the National Disability Insurance Scheme in his roles as a director at the National Disability Insurance Agency and adviser at the Department of the Prime Minister and Cabinet.</span></em></p>Thousands of young people with disability who end up in nursing homes lead lives of isolation and boredom. Better and smarter housing finance and support options are at last being developed.Di Winkler, Adjunct Associate Professor, La Trobe UniversityLuke Bo'sher, Fulbright Scholar, New York UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/543732016-05-02T10:07:34Z2016-05-02T10:07:34ZHow universal design can help every voter cast a ballot<figure><img src="https://images.theconversation.com/files/120047/original/image-20160425-22360-1t46uko.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">One balloting machine for all voters: universal design is accessible for everyone, with or without disabilities.</span> <span class="attribution"><span class="source">University of Florida</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span></figcaption></figure><p>In the 2012 presidential election, 15.6 million people with disabilities reported voting, leaving people without disabilities to make up the <a href="http://www.presidency.ucsb.edu/data/turnout.php">remaining 110 million votes cast</a>. The turnout rate for voters with disabilities was 5.7 percent lower than for people without disabilities. If voters with disabilities had voted at the same rate as those without a disability, there <a href="http://smlr.rutgers.edu/research-centers/disability-and-voter-turnout">would have been</a> three million more voters weighing in on issues of local, state and national significance. </p>
<p>In 2012, 30.1 percent of voters with a disability reported difficulty in voting at a polling place, as compared to 8.4 percent of voters without disabilities. People reported difficulty in reading or seeing the ballot, or understanding how to vote or use voting equipment. This disparity wasn’t supposed to exist after the Help America Vote Act (HAVA) passed in 2002. That law provided US$3.9 billion for states to upgrade their voting equipment after the issues in Florida during the 2000 presidential election. Furthermore, the HAVA required every voting place to have at least one voting machine that is “accessible” to individuals with disabilities, so they could vote privately and independently.</p>
<p>So why, a decade after HAVA passed, did these problems still exist? With the HAVA funds and accessible voting machines, they were supposed to be solved – or at least much less common.</p>
<h2>Problems voting</h2>
<p>To figure out what was going on, my team and I investigated, speaking both to voters with disabilities and election officials. We learned there were various problems, such as voting machines not being set up, poll workers not knowing how to use the equipment and even that people weren’t sure how to operate various features of the machine, such as how to use the audio or the touchscreen interface.</p>
<p>But the fundamental problem is that voters with disabilities are being offered a “separate but equal” approach to voting. And, as ever, separate is <em>not</em> equal. When a voting place has a separate accessible voting machine, it’s not used as frequently as the primary method of voting. Therefore, poll workers don’t spend as much time using the accessible voting equipment. As a result of this minimal use, poll workers will forget how to set up the equipment and how to instruct someone with a disability how to use it.</p>
<p>In my estimation, the best way to remedy the disparity in voting between voters with disabilities and those without is to provide a voting machine that can be used by all voters, no matter their disability, or lack of a disability. This goal relies on “<a href="https://www.ncsu.edu/ncsu/design/cud/about_ud/udprinciplestext.htm">universal design</a>” – the principle of designing a system or environment such that it has the broadest access for as many people as possible. For example, wheelchair ramps have a universal design because they can be used by people with wheelchairs and those who can walk.</p>
<h2>One voting machine for all</h2>
<p>The idea of creating a universally designed voting machine isn’t new. In 2003, our research lab created the first universally designed voting machine, called <a href="http://www.primevotingsystem.org/">Prime III</a>. At that time, conventional wisdom suggested that universal design was not possible in voting. Recall that the HAVA, passed in 2002, required just one accessible voting machine in each voting place. This was how lawmakers, election officials and voting machine experts conceived accessibility in voting. With HAVA funding long since run out, states and municipalities must find cost-efficient ways to expand voting access. One way to do this is to integrate accessibility into <em>every</em> voting machine.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/ZveAYVgGkVg?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">A demonstration of various methods of using an accessible voting system.</span></figcaption>
</figure>
<p>With the Prime III, voters can mark their ballots using touch, voice or both. They can touch the computer screen directly, or use a keyboard, button switches, joysticks or other input devices to interact with the voting interface. Other voters can use a microphone and headset to respond to verbal prompts. These options allow people who cannot read, cannot hear and even lack arms to all vote on the same machine as someone with perfect sight, dexterity and hearing. It’s one machine for everyone, independent of their ability or disability. </p>
<p>After Prime III was developed in 2003, my lab’s research team <a href="https://dl.acm.org/citation.cfm?id=1241006">conducted</a> <a href="https://dl.acm.org/citation.cfm?id=1502727">several</a> <a href="http://citeseerx.ist.psu.edu/viewdoc/summary?doi=10.1.1.587.2496">experiments</a> and elections to test its accessibility and usability. For example, the National Council on Independent Living (NCIL) used Prime III in its national organizational election. NCIL has members who have various levels of disabilities. Self Advocates Becoming Empowered (SABE) is an organization that represents people with cognitive disabilities or limitations. SABE used Prime III in two of its national organizational elections. This was a critical test for Prime III as the team used candidate pictures on the ballot to accommodate people with shortcomings in reading literacy. The election was very successful: the people running those elections told us there were no failures of equipment, everyone was able to vote, the results were accurate and when there were mistakes, they were corrected.</p>
<p>Other states have also vetted the system and found it useful. For example, in 2012, Oregon used Prime III in the presidential primaries. In 2014, the state of Wisconsin did a pilot with Prime III in two voting places. There were many other tests as well with the aging population, blind voters and children who could not read.</p>
<h2>Giving it away for free</h2>
<p>Prime III was the first, but many <a href="http://elections.itif.org/">others are following</a>, such as the <a href="http://www.essvote.com/products/12/12/universal-voting-system/expressvote/">ES&S ExpressVote</a>.</p>
<p>In September 2015, Prime III was released as <a href="https://github.com/HXRL/Prime-III">open-source software</a>. This allows anyone in the world to download and use the Prime III software for free. They still do need to have a computer, printer and accessibility hardware such as a joystick and microphone, but our system works with a wide range of commercially available products.</p>
<p>People can also extend Prime III, such as making modifications to observe specifics of local election laws. For the February 9, 2016, presidential primaries, New Hampshire was the <a href="https://www.verifiedvoting.org/one4all/">first state</a> to use Prime III at every polling place. Initial results were positive, with vision-impaired voters <a href="http://nhpr.org/post/tablet-based-ballot-system-blind-voters-debut-during-nh-primary">telling news media</a> that it was a major <a href="http://www.citizen.com/news/2016-02-10/Front_Page/New_tablets_debut_at_polls_for_blind_voters.html">improvement</a> over prior systems. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/g6jgmIdG56M?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">A demonstration of New Hampshire’s One4All voting system.</span></figcaption>
</figure>
<p>All New Hampshire polling places will use the system again in November’s general election, including for the presidential race. It will be the primary system for people who need an accommodation to be able to vote, but will also be available for use by voters without disabilities. That’s a big step toward the goal of having all voting machines usable by all people.</p>
<p>Universal design is necessary in voting. According to the US Census, <a href="http://www.census.gov/hhes/www/socdemo/voting/publications/p20/2012/tables.html">one in five Americans has a disability</a>. Even disabilities people might not think of as causing voting problems can: voting machines can be set up too high for easy use from a wheelchair, for example. It is every citizen’s right to have accessible elections; in addition, it is the law. Universally designed voting technologies will have the greatest impact in accomplishing this goal. Making independent, private voting accessible for all voters regardless of their ability or disability is achievable now.</p><img src="https://counter.theconversation.com/content/54373/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Juan E. Gilbert consulted with ES&S on the ExpressVote machine's accessibility. He received funding from the U.S. Election Assistance Commission and the National Science Foundation for his work with voting technologies. </span></em></p>In 2012, nearly one-third of voters with a disability had trouble voting. A 2002 law was supposed to fix this problem. New technology may have the answer at last.Juan E. Gilbert, Andrew Banks Family Preeminence Endowed Chair, Associate Chair of Research Computer & Information Science & Engineering Department, University of FloridaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/527572016-01-28T04:39:16Z2016-01-28T04:39:16ZVideo on demand offers poor access for viewers with disabilities<figure><img src="https://images.theconversation.com/files/109310/original/image-20160127-19637-u4iz77.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Why do most Australian streaming services not offer basic accessibility features?</span> <span class="attribution"><span class="source">Gregor Gruber</span></span></figcaption></figure><p>Just over a year ago, on Australia Day 2015, Nine Entertainment Co. and Fairfax media launched Australia’s first video on demand (VoD) service, STAN, as a joint venture. Shortly followed by Presto and the US based Netflix, Australia commenced the subscription video on demand <a href="http://www.news.com.au/technology/home-entertainment/tv/netflix-leads-the-streaming-wars-followed-by-foxtels-presto/news-story/7adf45dcd7d9486ff47ec5ea5951287f">streaming wars</a>.</p>
<p>Attracting audiences matters in the war to dominate the video on demand environment. Niche audiences are particularly important: they add up to a surprisingly large market share, and are <a href="https://theconversation.com/new-rules-for-a-new-generation-of-television-producers-47088">ferociously loyal</a>.</p>
<p>In this market, it seems obvious streaming services should compete for the disabled audience, which has <a href="http://www.rmit.edu.au/media/public-site-media-production/documents/college-of-design-and-social-context/schools/media-and-communication/cpc-journal/volume-47-issue-3/CPC-vol47-no3-2-Ellis.pdf">typically been neglected</a> as a demographic.</p>
<p>So why do most Australian streaming services not offer basic accessibility features? Should the government force VoD companies to match the accessibility requirements of broadcast television?</p>
<h2>TV for the hearing or visually impaired</h2>
<p>Television is particularly disabling for people with vision and hearing impairments. These groups may require accessibility options such as closed captions and audio description to engage with television at all.</p>
<p>Captions are well-known and accepted, and have been <a href="available%20on%20Australian%20television%20since%201992">available on Australian television since 1992</a>. According to a 2012 amendment to the <a href="http://www.mediaaccess.org.au/tv-video/policy-and-expectations">Broadcasting Services Act</a> (BSA) Australian broadcasters must caption 100% of their content between 6am and midnight by 2015. As a result, there’s an expectation that captions should be available on VoD. </p>
<p>By comparison, <a href="http://www.mediaaccess.org.au/about/what-is-media-access/what-is-audio-description">audio description</a> is largely unknown and isn’t covered by the BSA. Audio description is designed to help blind or visually-impaired people enjoy television, with an extra narration track describing what is happening, usually during pauses in dialogue. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/B8BD9txkGL4?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The Hunger Games with audio description.</span></figcaption>
</figure>
<h2>The role of the government</h2>
<p>Before the release of VoD in Australia, federal <a href="http://www.abc.net.au/mediawatch/transcripts/1105_bcd.pdf">policy papers</a> recognised the need for accessibility features for audiences with vision and hearing impairments. They predicted video on demand companies would include captions and audio description without the need for government intervention.</p>
<p>But a content analysis of the policy sections of STAN, Presto, Netflix, QuickFlix and Foxtel on Demand in November last year found none of the Australian video on demand providers have an accessibility policy. </p>
<p>STAN quietly introduced closed captions for around 300 titles early this year, with <a href="http://www.mediaaccess.org.au/latest_news/news/stan-introduces-closed-captions">more to come</a>. Presto is “<a href="https://community.presto.com.au/t5/Getting-Started/Closed-captions-and-Subtitles/td-p/1521">working on</a>” adding captions, and Quickflix has adopted a distributor-led approach, making captions available if the distributing studio offered them. </p>
<p>Despite the lack of clear accessibility policy, Netflix is in front in terms of accessibility, with captions available for most content. Audio descriptions for <a href="http://www.smh.com.au/digital-life/digital-life-news/netflix-adds-audiodescription-feature-for-visionimpaired-subscribers-20150422-1mraui.html">some content</a> became available in April 2015, shortly after the company’s Australian launch. </p>
<p>Chris Mikul, who is Media Access Australia’s project manager for television, and author of the 2015 <a href="http://www.mediaaccess.org.au/research-policy/research-and-reports/access-on-demand-captioning-and-audio-description-on-video-on-demand-services">Access on Demand</a> report, told us this was due to the impacts of legislation in the US, namely the <a href="https://transition.fcc.gov/cib/dro/cvaa.html">Communications and Video Accessibility Act</a>.</p>
<p>Mikul believes the complete lack of audio description from local streaming services can be attributed to the lack of legislation requiring it.</p>
<h2>Advocating for accessibility</h2>
<p>For companies that operate internationally, legislation in a single country can prompt improvements across their entire network. Audio description services from Netflix is one example of this; overall legislation is extremely effective at improving disability access. </p>
<p>When Netflix became available in Australia and New Zealand last year, the head of <a href="https://netflixproject.wordpress.com/">The Accessible Netflix Project</a>, Robert Kingett, argued the move could see <a href="http://netflixproject.wordpress.com/2014/11/19/will-netflix-be-inaccessible-in-australia-and-new-zeeland/">improved Netflix accessibility</a> internationally due to the history of accessibility advocacy in Australia. </p>
<p>Following <a href="https://www.humanrights.gov.au/bruce-lindsay-maguire-v-sydney-organising-committee-olympic-games">Bruce Maguire v The Sydney Olympics Organising Committee</a>, Australia was the first country to introduce online accessibility legislation.</p>
<p>Despite the Australian policy predictions laid out in 2008, <a href="http://ec.europa.eu/digital-agenda/en/news/study-assessing-and-promoting-e-accessibility">a European study</a> of 31 countries found digital and online television accessibility was more widely available in countries where legislation is in place.</p>
<p>But despite <a href="http://accan.org.au/index.php/access-for-all/research-reports/524-blindness-sector-report-on-the-2012-abc-audio-description-trial.">successful trials</a>, there is no legislation in place regarding the provision of audio description in Australia and the other VoD providers have not introduced audio description as a way to compete with Netflix.</p>
<p>Kingett told us in an interview that VoD providers treat accessibility as an “afterthought,” particularly for blind people, who most don’t think of as watching TV. </p>
<p>Yet research dating back to the 1990s shows almost 100% people with vision impairments watch television at least <a href="http://www.afb.org/section.aspx?FolderID=3&SectionID=3&TopicID=135&DocumentID=1232#frustrating">once a day</a>. Kingett describes the lack of accessibility as evidence VoD is “stuck in the dark ages” and recommends streaming services hire people with disabilities:</p>
<blockquote>
<p>If companies want to learn about accessibility, or have someone who will really care so they don’t have to, then actually go out and hire a disabled department leader to lead the audio description team, accessibility design team, or otherwise. </p>
</blockquote>
<p><a href="https://accan.org.au/grants/current-grants/1066-accessing-video-on-demand-a-study-of-disability-and-streaming-television">Our research</a> shows people with disabilities, including people with vision impairments do use VoD and continue to have particular unmet access needs.</p>
<p>As the Netflix example illustrates, both legislation and recognition of people with disabilities as a key audience demographic will result in a more accessible television environment for people with disabilities.</p><img src="https://counter.theconversation.com/content/52757/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Katie Ellis receives funding from the ARC and ACCAN</span></em></p><p class="fine-print"><em><span>Mike Kent receives funding from ACCAN and the Nation Center for Student Equity in Higher Education. He is a member of the board of Electronic Frontiers Australia
</span></em></p>One year after the first video on demand service launched in Australia, why do most companies not offer basic accessibility features for disabled audiences?Katie Ellis, Senior Research Fellow in Internet studies, Curtin UniversityMike Kent, Senior lecturer in Internet Studies , Curtin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/530442016-01-14T11:52:35Z2016-01-14T11:52:35ZLessons from London: how hosting the Paralympics can make cities more accessible<figure><img src="https://images.theconversation.com/files/107995/original/image-20160113-8429-11irjua.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">from www.shutterstock.com</span></span></figcaption></figure><p>In September 2016, 4,350 Paralympic athletes will arrive <a href="http://www.rio2016.com/en/paralympics">in Rio de Janeiro</a> to compete for medals across 23 different sports. The games in Rio have a lot to live up to. London’s 2012 Paralympics proved to be a <a href="http://www.wsj.com/articles/SB10001424052748703398504576099680221267872">magnet for sponsorship</a>, and <a href="http://www.bbc.com/sport/disability-sport/35255001">competitors have said</a> that the crowds – and their enthusiasm – were unparalleled. But there’s another respect in which the 2012 games set the standard for future Paralympic tournaments: it made the host city itself more accessible. </p>
<p>In order to secure <a href="http://www.olympic.org/Documents/Reports/Official%20Past%20Games%20Reports/Summer/2012/ENG/2012-RO-S-London_V1_I_eng.pdf">their bid</a> for the London 2012 Olympic and Paralympic games, organisers had to make two key promises to do with transport. One was to make public transport a key part of their sustainability agenda. The other was to make London 2012 more accessible than any previous games. London 2012 was planned as a public transport-driven games, and the London Organising Committee of the Olympic and Paralympic Games (LOCOG) took action to maximise its usage.</p>
<h2>The challenges</h2>
<p>To live up to their promises, the committee had to overcome a number of challenges. Parts of London’s transport system had to undergo a radical overhaul. The commitments also had major implications for venue design, equipment and even the workforce of the games. And because the <a href="https://theconversation.com/do-the-olympics-and-paralympics-really-leave-a-social-legacy-9156">idea of “legacy”</a> was central to all of the preparations for the games, the solutions put in place needed to work over the long term – not just the main event. </p>
<p>When LOCOG started its work, disabled people’s confidence in using the public transport network <a href="http://www.londontravelwatch.org.uk/documents/get_lob?id=3739&field=file">was very low</a>, so there was a need to change people’s perceptions through advertising. The demand from disabled people to attend the Paralympics was higher than expected, but organisers did not know what sort of mix of disabled spectators they needed to plan for. For example, while they knew that many groups of wheelchair users would be arriving, they did not know how many would be using electric wheelchairs, manual wheelchairs or scooters – each of which has different requirements for travel. </p>
<p>Finally, the transport system needed to be flexible enough to accommodate the extra short-term influx and diverse needs of disabled people, and revert back to more “standard” operations after the event. For a transport system first developed in the mid-1800s, these were no small demands. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/107994/original/image-20160113-8406-16g0gls.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/107994/original/image-20160113-8406-16g0gls.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=430&fit=crop&dpr=1 600w, https://images.theconversation.com/files/107994/original/image-20160113-8406-16g0gls.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=430&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/107994/original/image-20160113-8406-16g0gls.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=430&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/107994/original/image-20160113-8406-16g0gls.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=540&fit=crop&dpr=1 754w, https://images.theconversation.com/files/107994/original/image-20160113-8406-16g0gls.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=540&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/107994/original/image-20160113-8406-16g0gls.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=540&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Queensway tube station, circa 1900.</span>
<span class="attribution"><a class="source" href="https://en.wikipedia.org/wiki/History_of_the_London_Underground#/media/File:London_Underground_circa_1900.jpg">Pigsonthewing/Wikimedia Commons</a></span>
</figcaption>
</figure>
<p>The London Underground – commonly known as “the tube” – was the first underground rail network in the world. At some points, the tracks are <a href="http://www.telegraph.co.uk/travel/destinations/europe/uk/london/9789966/London-Underground-150-fascinating-Tube-facts.html">almost 60m</a> below ground. Modernising such a system involves working around complex arrangements of existing infrastructure. For example, <a href="http://www.bbc.com/news/blogs-ouch-29367464">adding a two-lift shaft</a> to Green Park station in central London in time for the games required engineers to build a straight path between pedestrian tunnels, escalators, stairwells and the platforms themselves – not to mention finding the least disruptive times to carry out the developments and space to store the construction equipment. </p>
<p>Such logistics meant that it was impossible for LOCOG to create new accessible entrances into all of the stations. Nevertheless, the organising committee worked with Transport for London, the city’s transport authority, to adapt the public transport system and improve accessibility. </p>
<h2>The changes</h2>
<p>Evidence such as wheelchair ticket sales, pre-booked journeys and increased lift usage <a href="http://www.publications.parliament.uk/pa/cm201314/cmselect/cmtran/116/116.pdf">suggests that</a> many more people with disabilities were using public transport throughout the games. Tactile paving and protective walls at the platform edges made the system safer for the visually impaired. And 66 of London’s 270 functioning tube stations were fitted with <a href="http://content.tfl.gov.uk/Part-1-Item06-TfL-Games-performance-Final-corrected.pdf">step-free access</a>, while the overground DLR system was fully accessible. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/107996/original/image-20160113-14613-1q0j0c5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/107996/original/image-20160113-14613-1q0j0c5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/107996/original/image-20160113-14613-1q0j0c5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/107996/original/image-20160113-14613-1q0j0c5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/107996/original/image-20160113-14613-1q0j0c5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/107996/original/image-20160113-14613-1q0j0c5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/107996/original/image-20160113-14613-1q0j0c5.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">Wheely inaccessible.</span>
<span class="attribution"><span class="source">from www.shutterstock.com</span></span>
</figcaption>
</figure>
<p>In many stations – particularly on the Piccadilly line – the issue was the height difference or the gap between the platform and the carriage floor. Changing the position of the platforms would have been disruptive and costly. So instead, platform ramps were installed across four stops on the Piccadilly line, while manual ramps <a href="https://tfl.gov.uk/info-for/media/press-releases/2012/september/manual-boarding-ramps-to-be-retained-at-key-tube-stations-after-the-games">were provided</a> at 16 strategic stations, to make it easier for wheelchair users to get on and off the train. </p>
<p>These ramps not only benefited disabled people but could be used by the wider community, including parents with pushchairs and tourists with suitcases. They were <a href="https://tfl.gov.uk/info-for/media/press-releases/2012/september/manual-boarding-ramps-to-be-retained-at-key-tube-stations-after-the-games">left in place</a> after the games as part of LOCOG’s legacy commitment. And since then, they have been added to <a href="https://tfl.gov.uk/info-for/media/press-releases/2015/may/lu-stations-with-manual-boarding-ramps-up-by-">28 more stations</a>. </p>
<p>Of course, there’s still much to be done before London can be a truly accessible city – a fact highlighted by Paralympian Hannah Cockroft, <a href="http://www.itv.com/news/london/2014-10-03/paralympic-champion-challenges-boris-johnson-to-spend-a-day-in-a-wheelchair/">who challenged</a> London Mayor Boris Johnson to spend a day navigating the tube in a wheelchair (he declined). And <a href="http://www.parliament.uk/business/committees/committees-a-z/commons-select/transport-committee/news/disabled-report--substantive/">there are concerns</a> that the momentum toward further improvements is waning. </p>
<p>But London 2012 still marked a major leap forward in disabled access to public transport. Through a combination of controlled traffic management, communication with Londoners and collaboration with industry partners, LOCOG was able to develop practical and efficient transport solutions. These did more than fulfil the transport requirements for the Olympic and Paralympic Games: they also left a legacy value for Londoners to enjoy, and set a new standard in games-time transport. </p>
<p>Now, Rio is taking the challenge to heart, by <a href="http://www.rio2016.com/en/news/rio-mayor-launches-project-to-improve-accessibility-in-city-ahead-of-2016-olympic-and-paralympi">launching projects</a> to improve accessibility in the city ahead of the 2016 Olympic and Paralympic Games. Indeed, British experts have <a href="http://www.rio2016.com/en/news/british-experts-to-help-improve-accessibility-in-brazilian-cultural-spaces-through-rio-2016-gam">been actively involved</a> in helping to transfer the learning from London 2012 to improve accessibility for Rio 2016. Rio has a golden opportunity to seize this legacy opportunity and set even better standards. Let the games begin.</p>
<p><em>This article is part of a series on the outlook for <a href="https://theconversation.com/uk/topics/rio-2016">Rio 2016</a>. You can also find out why <a href="https://theconversation.com/five-reasons-why-your-city-wont-want-to-host-the-olympic-games-52289">your city won’t want to</a> host the next Olympics, and discover the story of <a href="https://theconversation.com/vila-autodromo-the-favela-fighting-back-against-rios-olympic-development-52393">the favela fighting back</a> against Olympic developments.</em></p><img src="https://counter.theconversation.com/content/53044/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Bamford 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>Navigating a major metropolis with a disability is tough, but the Paralympics give us the chance to make it work.David Bamford, Professor of Operations Management, University of HuddersfieldLicensed as Creative Commons – attribution, no derivatives.