tag:theconversation.com,2011:/us/topics/disability-care-66805/articlesDisability care – The Conversation2023-05-15T00:20:29Ztag:theconversation.com,2011:article/2050172023-05-15T00:20:29Z2023-05-15T00:20:29ZHome support work in NZ is already insecure and underpaid – automation may only make it worse<figure><img src="https://images.theconversation.com/files/525771/original/file-20230512-43136-ssuj49.jpg?ixlib=rb-1.1.0&rect=8%2C0%2C5599%2C3732&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Getty Images</span></span></figcaption></figure><p>The number of number of people aged 65 years or older living in New Zealand is likely to hit one million by 2028, <a href="https://www.stats.govt.nz/news/one-million-people-aged-65-by-2028/">according to the latest statistics</a> – up from under 300,000 in 1980. Caring for this ageing population will become increasingly important.</p>
<p>Research has shown New Zealanders prefer to <a href="https://www.msd.govt.nz/about-msd-and-our-work/publications-resources/journals-and-magazines/social-policy-journal/spj27/ageing-in-place-the-views-of-older-homeowners-27-pages128-141.html">retain independence</a> for as long as possible with the help of home-based care. Yet home support workers (HSWs) – those who assist older people, as well as people with disabilities and long-term conditions – have been underpaid and underappreciated for decades. </p>
<p>This is affecting the long-term sustainability of the workforce. According to a <a href="https://workresearch.aut.ac.nz/document-library/survey-reports/latest-survey-reports/the-new-zealand-care-workforce-survey-2019-report">2019 survey</a>, over 35% of care workers were aged 55-64. Only 11% were aged 25-34. In other words, care workers are getting older too.</p>
<p>Partly to address this, care provider companies (predominantly for-profit) are introducing platform technologies – or “care apps”. The rationale is that these empower care workers, create efficiencies for cost-conscious government agencies, and offer autonomy for clients.</p>
<p>It’s been claimed automation in the homecare sector will lower overhead costs and allow for staff pay to increase. Provider companies say it will also streamline the management of timesheets, salary payment, leave applications and access to client notes.</p>
<p>Our <a href="https://carecca.nz/research/care-home-support-workers-project/">research</a> and <a href="https://www.youtube.com/watch?v=_zbDe2s4YQE&ab_channel=CAREMassey">recently launched report</a> critically interrogates these claims, as well as the broader impact of these platform technologies on the working lives of HSWs, and their resulting ability to provide dignified care. </p>
<p>Rather than support claims of empowerment and efficiency, our interviews and focus groups with HSWs suggest the care apps, as they are currently used, are exacerbating pre-existing systemic failures. These lead to disempowering underpayment, declining professional autonomy and alarming health and safety risks.</p>
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<h2>Trust and communication</h2>
<p>Our interviewees’ experiences describe four broad themes: </p>
<p><strong>Digital frustration:</strong> a lack of input into the design of the technology affects not only worker wellbeing, but also the quality of care that can be provided. </p>
<p>For example, one participant described how sudden changes to her roster made through the app disrupt the client trust she has established over time. This affects her ability to provide tailored care based on detailed knowledge of the client’s needs and personal circumstances, as well as contributing to a feeling of having little professional autonomy or control:</p>
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<p>Sometimes [the app] doesn’t work that well because suddenly they change your roster. So I can ring my clients I’ve had the night before and say, yep I’m coming, I’ll see you around about 10 o'clock. And then the next day suddenly your roster has changed and that person now is not on your roster.</p>
<p>You now don’t have the phone number, so you can’t ring them to say my roster’s changed, I’m not going to come now, and then they’re gonna get somebody else turn up unexpectedly.</p>
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<p><strong>Precarity:</strong> care apps add to the already significant burden of unpaid labour, while cementing trends towards deskilling and loss of professional autonomy. One participant described how she had to log into the app four times for a single client. Another described how she would have to phone a call centre and explain if she forgot to log in. </p>
<p>Care workers are paid per client in a piecemeal way. Rather than receiving a salary, they don’t get paid for time spent on these other activities. </p>
<p>Several participants described how the requirement to log in often interrupted their ability to provide client care, taking focus away from often urgent tasks, as well as the skilled work of building a trusting relationship.</p>
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Read more:
<a href="https://theconversation.com/the-coronavirus-crisis-shows-why-new-zealand-urgently-needs-a-commissioner-for-older-people-139383">The coronavirus crisis shows why New Zealand urgently needs a commissioner for older people</a>
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<p><strong>Communication inequality:</strong> care apps (and smart phones more broadly) mean HSWs are always accessible to employers who can track their location with GPS technology. They can also add, remove and change clients with minimal notice (often causing distress to HSWs and their clients). </p>
<p>Meanwhile, participants described a lack of access to decision-makers, with local offices often having been closed and centralised into call centres. Functions for contacting managers or payroll departments through the app were often broken. As one participant said:</p>
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<p>It’s difficult to get through to them […] You’ll ring the call centre, ask them to do something, or you leave a message […] and it just doesn’t happen. These are huge breakdowns in communication.</p>
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<p><strong>Health and safety:</strong> communication inequality exposes HSWs and their clients to undue risks, made even greater in the context of COVID-19. On top of insecure working conditions during the pandemic and difficulty getting adequate personal protective equipment, HSWs lacked access to up-to-date information about the COVID status of their clients, or access to expert support during medical emergencies.</p>
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Read more:
<a href="https://theconversation.com/voiceless-and-vulnerable-nzs-gig-workers-faced-more-risk-with-fewer-protections-during-the-pandemic-178747">Voiceless and vulnerable, NZ's gig workers faced more risk with fewer protections during the pandemic</a>
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<h2>Incorporating workers’ voices</h2>
<p>According to the HSWs we interviewed, there is little recognition by their employers of the highly skilled work they do. Their valuable knowledge of the mechanics of providing care in the community has not been incorporated into the design of the care apps.</p>
<p>To ensure the new technology contributes to a sustainable workforce and to high-quality care in future, significant improvements to home care in general must be made. </p>
<p>Currently there are <a href="https://www.psa.org.nz/our-voice/crisis-in-home-support-demands-urgent-government-overhaul/">significant concerns</a> about how home care is funded, delivered and accounted for. The lack of professional control, autonomy or trust experienced by workers, as well as the piecemeal pay system, must be addressed as part of the development of care apps if they are to be truly empowering.</p>
<p>This would deliver real improvements for clients and workers. Our evidence suggests that care apps imposed on a workforce without their professional input cannot be a magic bullet that solves the long-term challenges of demographic change and systemic inefficiency.</p>
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Read more:
<a href="https://theconversation.com/after-covid-why-we-need-a-change-in-care-home-culture-156264">After COVID: why we need a change in care home culture</a>
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<h2>Protecting the vulnerable</h2>
<p>Home care is complex and messy, and things can change from minute to minute. Worker and client voices should be actively incorporated in both the design and evaluation of the technology. </p>
<p>This will protect their interests and ensure the right balance is struck between privacy protection and the provision of up-to-date information on client needs. Any data that are extracted and stored must also uphold the principles of Te Tiriti o Waitangi.</p>
<p>Ensuring the voices of HSWs and their unions inform the technological parameters of their work will help prevent the worsening of their already fragile workplace conditions.</p>
<p>Ultimately, failure to ensure the sustainability of this vital workforce would be a collective failure to care for our most vulnerable people.</p><img src="https://counter.theconversation.com/content/205017/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Leon Salter receives funding from MBIE/Royal Society.</span></em></p><p class="fine-print"><em><span>Lisa Vonk has received a scholarship from the HOPE Foundation for Research on Ageing. </span></em></p>The introduction of ‘care apps’ has been sold as improving efficiency and even pay rates for homecare providers. But a new study suggests it may only be exacerbating existing problems in the industry.Leon Salter, Postdoctoral Fellow, Center for Culture-Centered Approach to Research and Evaluation, Massey UniversityLisa Vonk, Doctoral Candidate, School of Humanities, Media and Creative Communication, Massey UniversityLicensed as Creative Commons – attribution, no derivatives.tag: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>
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<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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<img src="https://counter.theconversation.com/content/204041/count.gif" alt="The Conversation" width="1" height="1" />
<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/1901442022-11-08T04:32:49Z2022-11-08T04:32:49ZIt’s after-hours and I need to see a doctor. What are my options?<figure><img src="https://images.theconversation.com/files/492919/original/file-20221102-26769-rn9s3s.jpg?ixlib=rb-1.1.0&rect=0%2C361%2C5506%2C3371&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/35bnMbid2rQ">Shane/Unsplash</a></span></figcaption></figure><p>There are times when medical care can’t wait until 9am or first thing Monday. Perhaps your COVID has worsened and you’re becoming short of breath. Or your baby has a fever that’s worrying you. Or your elderly parent’s pain can’t be relieved with over-the-counter medications.</p>
<p>When last asked in 2020, <a href="https://chf.org.au/ahpafterhoursprimarycare">two-thirds of Australians</a> had accessed after-hours health services in the previous five years. But how do you access health care on weekends and after 5pm in 2022? </p>
<p>Many GP Super Clinics continue to operate beyond business hours, accept walk-ins and provide access to onsite pharmacy services. You can find their locations <a href="https://www1.health.gov.au/internet/main/publishing.nsf/Content/pacd-gpsuperclinics-locations">here</a>, though opening hours and costs vary between clinics.</p>
<p>Search engines such as <a href="https://www.hotdoc.com.au/find/doctor/australia">HotDoc</a> and <a href="https://www.healthdirect.gov.au/australian-health-services">Healthdirect</a> can help you find local health services such as GPs, COVID testing clinics, emergency departments, and allied health services. You can filter search results by “open now”, bulk-billing and accessibility requirements such as building access ramps. </p>
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Read more:
<a href="https://theconversation.com/emergency-departments-are-clogged-and-patients-are-waiting-for-hours-or-giving-up-whats-going-on-184242">Emergency departments are clogged and patients are waiting for hours or giving up. What's going on?</a>
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<p>The COVID pandemic accelerated investment in virtual care for non-life-threatening emergencies, which can be less stressful for patients and families than attending an emergency department. </p>
<p>Here are some options for in-person and virtual after-hours care.</p>
<h2>Nurse helplines</h2>
<p>If you’re not sure whether you need medical care, or if you need basic information or advice, a useful starting point is to call a <a href="https://www.healthdirect.gov.au/nurse-on-call">free nursing helpline</a> such as <a href="https://www.health.vic.gov.au/primary-care/nurse-on-call">Nurse-on-Call</a> in Victoria, <a href="https://www.qld.gov.au/health/contacts/advice/13health">13HEALTH</a> in Queensland, or <a href="https://www.healthdirect.gov.au/nurse-on-call">Healthdirect</a> in other states.</p>
<p>In some cases, nurses may offer a <a href="https://about.healthdirect.gov.au/after-hours-gp-helpline">call-back from a GP</a> using phone or video consultation. </p>
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<img alt="Doctor talks on phone" src="https://images.theconversation.com/files/492920/original/file-20221102-26775-8kxbwh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/492920/original/file-20221102-26775-8kxbwh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/492920/original/file-20221102-26775-8kxbwh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/492920/original/file-20221102-26775-8kxbwh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/492920/original/file-20221102-26775-8kxbwh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/492920/original/file-20221102-26775-8kxbwh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/492920/original/file-20221102-26775-8kxbwh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">In some cases, the nurse may offer a call back from a GP.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/doctor-talking-on-the-cellphone-5207089/">Pexels/Karolina Grabowska</a></span>
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<h2>Getting a doctor to visit you at home</h2>
<p>The <a href="https://homedoctor.com.au">National Home Doctor service</a>, which can be booked using telephone (13 74 25) or its mobile app, provides bulk-billed doctor home visits. </p>
<p>Telehealth consultations can also be booked through this service, though they may incur a fee.</p>
<h2>Video consultation with a GP</h2>
<p>A range of companies offer GP telehealth consultation after hours, for a fee. It doesn’t have to be an emergency, and can be used for things like last-minute repeat prescriptions.</p>
<p>Search engines <a href="https://www.hotdoc.com.au/find/doctor/australia">HotDoc</a> and <a href="https://www.healthdirect.gov.au/australian-health-services">Healthdirect</a> can direct you to these services through the “accepts telehealth” or “telehealth capable” options.</p>
<h2>Virtual emergency departments</h2>
<p>Virtual emergency departments in <a href="https://www.vved.org.au">Victoria</a>, <a href="https://metronorth.health.qld.gov.au/hospitals-services/virtual-ed">Queensland</a> and <a href="https://www.wacountry.health.wa.gov.au/Our-services/Command-Centre">Western Australia</a> allow people in these states to virtually connect with emergency doctors and nurse practitioners for treatment and advice on non-life-threatening emergencies. </p>
<p>In Victoria, the establishment of the <a href="https://www.vved.org.au/">virtual ED program</a> has <a href="https://www.prnewswire.com/news-releases/northern-health-using-the-clinicians-digital-health-platform-to-expand-their-victorian-virtual-emergency-department-statewide-301557186.html">decreased wait times</a>, with an easy-to-use platform, triage and waiting room. After the consultation, instructions can be emailed, or e-scripts sent to your local pharmacy. This service is currently covered by Medicare with no out-of-pocket costs, though that may change in the future.</p>
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Read more:
<a href="https://theconversation.com/video-and-phone-consultations-only-scratch-the-surface-of-what-telehealth-has-to-offer-146580">Video and phone consultations only scratch the surface of what telehealth has to offer</a>
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<p><a href="https://www.myemergencydr.com">My Emergency Doctor</a> is a private service with a hotline and web-based consultations with expert emergency doctors, for patients across Australia. Typically consultations cost A$250-$280, however people living in <a href="https://www.myemergencydr.com/patients/patients-within-primary-health-networks/">certain Primary Health Networks</a> can receive free after-hours telehealth consultations through this platform. </p>
<h2>Children’s health services</h2>
<p>In South Australia, free paediatric emergency services are available through the Women’s and Children’s Hospital’s <a href="https://www.wch.sa.gov.au/patients-visitors/emergencies/virtual-urgent-care">Child and Adolescent Virtual Urgent Care Service</a>, though similar services aren’t available across the country. </p>
<p>However, on-demand services such as <a href="https://www.kidsdoconcall.com.au">KidsDocOnCall</a> and <a href="https://www.cubcare.com.au">Cub Care</a> provide telehealth paediatric services after-hours to people in all states and territories, for a fee. </p>
<figure class="align-center ">
<img alt="Small baby's hand" src="https://images.theconversation.com/files/492924/original/file-20221102-12-2rqzk2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/492924/original/file-20221102-12-2rqzk2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=397&fit=crop&dpr=1 600w, https://images.theconversation.com/files/492924/original/file-20221102-12-2rqzk2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=397&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/492924/original/file-20221102-12-2rqzk2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=397&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/492924/original/file-20221102-12-2rqzk2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=499&fit=crop&dpr=1 754w, https://images.theconversation.com/files/492924/original/file-20221102-12-2rqzk2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=499&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/492924/original/file-20221102-12-2rqzk2.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">Paediatric telehealth is available after-hours for a fee.</span>
<span class="attribution"><a class="source" href="https://unsplash.com/photos/N-VEeMnm7gE">Baby Abbas/Unsplash</a></span>
</figcaption>
</figure>
<h2>Pharmacies</h2>
<p>If you need to see a pharmacist or buy medicine after-hours, the <a href="https://www.findapharmacy.com.au">Pharmacy Guild of Australia</a> and <a href="https://nationalnurse.com.au/late-night-pharmacies">National Home Nurse</a> pharmacy finders might be helpful. </p>
<p>In Victoria, <a href="https://www.chemistwarehouse.com.au/supercare-24-hour-chemist">Supercare Pharmacies</a> are also open 24/7, with nurses available from 6pm to 10pm.</p>
<p>Under the Pharmaceutical Benefits Scheme Continued Dispensing Arrangements, approved pharmacists may supply <a href="https://www.pbs.gov.au/info/general/continued-dispensing">eligible medicines</a> to a person in time of immediate need, when the prescribing doctor can not be contacted, once in a 12-month period.</p>
<h2>Medical chests in remote areas</h2>
<p>The Royal Flying Doctor service runs a <a href="https://www.flyingdoctor.org.au/sant/what-we-do/medical-chest-sant/">Medical Chest program</a>, to provide emergency and non-emergency, pharmaceutical and non-pharmaceutical treatments for people in remote areas, such as antibiotics, pain relief and first-aid. </p>
<p>Medical chests are provided for communities which are located more than 80 kilometres from professional medical services and maintained by a designated local medical chest custodian. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/our-study-found-after-hours-gps-actually-do-reduce-visits-to-emergency-rooms-79108">Our study found after-hours GPs actually do reduce visits to emergency rooms</a>
</strong>
</em>
</p>
<hr>
<h2>Mental health support</h2>
<p>Some mental health supports are available after-hours. Free options include:</p>
<ul>
<li><a href="https://healthability.org.au/services/after-hours-mental-health-nursing-service/">HealthAbility</a></li>
<li><a href="https://www.beyondblue.org.au/get-support/talk-to-a-counsellor">Beyond Blue</a></li>
<li><a href="https://www.suicidecallbackservice.org.au">Suicide Call Back Service</a></li>
<li><a href="https://www.lifeline.org.au">Lifeline</a> (13 11 14)</li>
<li><a href="https://kidshelpline.com.au">Kids Helpline</a>.</li>
</ul>
<p>You can also access paid psychologist services via platforms such as <a href="https://virtualpsychologist.com.au">Virtual Psychologist</a> and <a href="https://www.mymirror.com.au">MyMirror</a>. </p>
<figure class="align-center ">
<img alt="Woman waits in hospital waiting room" src="https://images.theconversation.com/files/492927/original/file-20221102-26784-d2poox.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/492927/original/file-20221102-26784-d2poox.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/492927/original/file-20221102-26784-d2poox.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/492927/original/file-20221102-26784-d2poox.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/492927/original/file-20221102-26784-d2poox.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/492927/original/file-20221102-26784-d2poox.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/492927/original/file-20221102-26784-d2poox.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">Hospital emergency departments can be hectic places.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/patient-sitting-hospital-ward-hallway-waiting-1085218841">Shutterstock</a></span>
</figcaption>
</figure>
<h2>Indigenous health and wellbeing</h2>
<p><a href="https://www.vahs.org.au/yarning-safenstrong/">Yarning SafeNStrong</a> is a free, confidential, culturally suitable counselling service for Aboriginal and Torres Strait Islander people. This service offers support with social and emotional wellbeing, financial wellbeing, medical support including COVID testing, drug and alcohol counselling and rehabilitation services. </p>
<p>Other Indigenous health services include <a href="https://www.13yarn.org.au/contact-us-13yarn">13YARN</a>, <a href="https://supportact.org.au/get-help/first-nations-support-2/">Support Act</a>, and <a href="https://www.dardimunwurro.com.au/brother-to-brother/">Brother to Brother</a>. </p>
<h2>For people with communication needs</h2>
<p>Access to after-hours care is often dependent on people’s ability to communicate over a phone. </p>
<p>The <a href="https://www.infrastructure.gov.au/media-communications-arts/phone/services-people-disability/accesshub/national-relay-service">National Relay Service</a> can assist hearing- or speech-impaired people with changing voice to text or English to AUSLAN. </p>
<p>Non-English speaking people can access interpreter assistance for telehealth via the <a href="https://www.tisnational.gov.au">National Translating and Interpreting Service</a>. This service is typically free of charge, covers 150 languages, and can be accessed after-hours. </p>
<h2>Life-threatening emergencies</h2>
<p>Of course, none of the options above should replace the Triple Zero (000) service for life-threatening emergencies <a href="https://www.betterhealth.vic.gov.au/health/servicesandsupport/calling-an-ambulance">such as</a> difficulty breathing, unconsciousness and severe bleeding. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/looking-online-for-info-on-your-childs-health-here-are-some-tips-97701">Looking online for info on your child's health? Here are some tips</a>
</strong>
</em>
</p>
<hr>
<p>This handy infographic shows some of your options for after-hours care. Click on the hand icon on top right to activate interactive elements. Then press the + button to learn more:</p>
<div style="width: 100%;"><div style="position: relative; padding-bottom: 56.25%; padding-top: 0; height: 0;">
<iframe title="" frameborder="0" width="100%" height="675" style="position: absolute; top: 0; left: 0; width: 100%; height: 100%;" src="https://view.genial.ly/633e428a5edcf7001226ef91" type="text/html" allowscriptaccess="always" allowfullscreen="true" scrolling="yes" allownetworking="all"></iframe>
</div> </div>
<hr>
<p><em>We would like to acknowledge the following people for their input to this article: Dr Loren Sher (Director of Victorian Virtual ED at the Northern Hospital), A/Prof Michael Ben-Meir (Director of Emergency Department, Austin Health), Ms Karen Bryant (Senior Aboriginal Liaison Officer, Northern Health) and Dr Kim Hansen (Director of Emergency, St Andrew’s War Memorial Hospital).</em></p><img src="https://counter.theconversation.com/content/190144/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>Sometimes you just can’t wait to see a doctor. With the addition of more virtual services during COVID, these days you have more options.Mahima Kalla, Digital Health Transformation Research Fellow, The University of MelbourneFeby Savira, Alfred Deakin Postdoctoral Research Fellow, Deakin UniversityKara Burns, Digital Health Program Manager at the Centre for Digital Transformation of Health, The University of MelbourneSathana Dushyanthen, Academic Specialist & Lecturer in Cancer Sciences & Digital Health, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1797482022-03-27T19:12:41Z2022-03-27T19:12:41ZWhat we know about the NDIS cuts, and what they’ll mean for people with disability and their families<figure><img src="https://images.theconversation.com/files/454282/original/file-20220325-32580-37t4va.jpg?ixlib=rb-1.1.0&rect=15%2C0%2C5059%2C3347&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Jon Flobrant/Unsplash</span></span></figcaption></figure><p>The latest National Disability Insurance Scheme’s (NDIS) <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">quarterly report</a> shows the average plan size per participant fell 4% between 2020 and 2021. </p>
<p>This confirms what many disability advocates have been warning about for some time: that the government is seeking to rein in costs of the NDIS by reducing individual plans.</p>
<p>While 4% does not sound a lot, the impact is being felt more by some groups, and some future changes mean care funding may get worse in the future. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-how-much-does-the-ndis-cost-and-where-does-this-money-come-from-95924">Explainer: how much does the NDIS cost and where does this money come from?</a>
</strong>
</em>
</p>
<hr>
<h2>Making the NDIS sustainable</h2>
<p>For some time, the government has been warning the NDIS is <a href="https://www.ndis.gov.au/news/6590-ndis-financial-sustainability-report-release">financially unsustainable</a>, with predictions spending on the NDIS could grow to <a href="https://www.ndis.gov.au/news/6590-ndis-financial-sustainability-report-release">A$40.7 billion</a> in 2024–25. This figure is more than $8.8 billion above what the government estimated the NDIS would cost annually.</p>
<p>There have been <a href="https://www.theguardian.com/australia-news/2021/jul/09/costs-over-benefits-passionate-defenders-of-ndis-disgusted-at-proposed-changes">criticisms</a>, by disability advocates and also Labour opposition, of these estimates of a cost blowout, so at the end of last year the government commissioned a review of these predictions, known as the <a href="https://www.dss.gov.au/sites/default/files/documents/01_2022/review-ndia-actuarial-forecast-model-and-drivers-scheme-costs.pdf">Taylor Francis</a> report.</p>
<p>This report confirmed the baseline estimates for the NDIS are likely a moderate underestimate, but the upper predictions are probably a slight overestimate.</p>
<p>The higher than anticipated costs for the scheme seem to be largely driven by a <a href="https://www.dss.gov.au/sites/default/files/documents/01_2022/review-ndia-actuarial-forecast-model-and-drivers-scheme-costs.pdf">greater number of participants</a> entering the scheme than originally projected, and fewer children (0–14 years) exiting the scheme, rather than increases in participant spending. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/women-rural-and-disadvantaged-australians-may-be-missing-out-on-care-in-the-ndis-120081">Women, rural and disadvantaged Australians may be missing out on care in the NDIS</a>
</strong>
</em>
</p>
<hr>
<p>The National Disability Insurance Agency (NDIA - the agency that runs the NDIS) has cited <a href="https://www.theguardian.com/australia-news/2022/mar/26/half-of-all-ndis-plans-reviewed-in-the-nt-had-funding-slashed-over-last-six-months">concerns</a> over its financial sustainability, and it appears to be attempting to reduce costs by reducing individual budgets to participants. </p>
<p>Last year we saw the proposed introduction of Independent Assessments <a href="https://theconversation.com/ndis-independent-assessments-are-off-the-table-for-now-thats-a-good-thing-the-evidence-wasnt-there-164163">fail</a>. The government argued these were an important mechanism to improve <a href="https://theconversation.com/dehumanising-and-a-nightmare-why-disability-groups-want-ndis-independent-assessments-scrapped-156941">equity of access</a> to the scheme, but many in the disability sphere were opposed to these as they were seen as a cost-cutting measure designed to reduce the average plan size. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ndis-independent-assessments-are-off-the-table-for-now-thats-a-good-thing-the-evidence-wasnt-there-164163">NDIS independent assessments are off the table for now. That's a good thing — the evidence wasn't there</a>
</strong>
</em>
</p>
<hr>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/454287/original/file-20220325-19-wkxu26.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Father and child preparing a meal at the bench." src="https://images.theconversation.com/files/454287/original/file-20220325-19-wkxu26.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/454287/original/file-20220325-19-wkxu26.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/454287/original/file-20220325-19-wkxu26.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/454287/original/file-20220325-19-wkxu26.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/454287/original/file-20220325-19-wkxu26.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/454287/original/file-20220325-19-wkxu26.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/454287/original/file-20220325-19-wkxu26.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">Part of the NDIS’ purpose was getting carers back into the workforce.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>Around the same time these measures were being explored, there were reports the NDIA had created a <a href="https://www.theguardian.com/australia-news/2021/apr/13/ndis-cost-cutting-taskforce-told-to-reduce-growth-in-participants-and-spending">task force</a> aiming to cut growth in funding packages and participant numbers. </p>
<p>The government argues this task force is no longer active, but over the past few months we have seen many NDIS participants report they have had their <a href="https://www.theguardian.com/australia-news/2022/feb/24/wildly-unreasonable-agency-slashes-mothers-ndis-funding-and-then-her-daughters">funding package cut</a> during their regular review. </p>
<h2>What does this mean for NDIS participants?</h2>
<p>The headline figure of an average of 4% reduction does not seem like a lot, and represents a shift in the average plan from $71,200 in 2020 to $68,500 in 2021. But as that’s an average, some people would be worse affected, and the overall trend is concerning.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-ndis-is-delivering-reasonable-and-necessary-supports-for-some-but-others-are-missing-out-97922">The NDIS is delivering 'reasonable and necessary' supports for some, but others are missing out</a>
</strong>
</em>
</p>
<hr>
<p>Unfortunately, the report doesn’t give much detail on who is experiencing the cuts, but we do know <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">34%</a> of participants saw a cut of more than 5% in their budget in the last six months of last year. That’s 3% more than in 2020-21 and 10% more than in 2019-20.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/454289/original/file-20220325-31729-dqgv5o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Carer and woman with disability playing with a dog." src="https://images.theconversation.com/files/454289/original/file-20220325-31729-dqgv5o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/454289/original/file-20220325-31729-dqgv5o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/454289/original/file-20220325-31729-dqgv5o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/454289/original/file-20220325-31729-dqgv5o.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/454289/original/file-20220325-31729-dqgv5o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/454289/original/file-20220325-31729-dqgv5o.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/454289/original/file-20220325-31729-dqgv5o.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">Making people with disability and their families contest funding cuts is incredibly stressful.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>There has also been a large increase in the number of people disputing these decisions. Between July 2021 and January 2022, an extra 1,423 people with disability have asked the Administrative Appeals Tribunal for a review, a <a href="https://www.msn.com/en-au/news/australia/400-surge-in-people-with-disabilities-disputing-their-ndis-plans-but-what-is-being-done-about-it/ar-AATRHid">400% increase</a> in people disputing their NDIS plan.</p>
<p>Not only do these disputes take time and effort on the part of the individuals contesting plans, but the NDIA also spends a lot on external legal firms to represent them at these reviews. In 2020-21 we saw a 30% increase in spending on legal firms, bringing this amount to <a href="https://teamdsc.com.au/resources/at-what-cost">$17.3 million</a>. </p>
<p>For individual participants these cuts can be devastating. It means existing supports that facilitate their lives disappear overnight. Some people will lose independence and suffer significant disruption to the lives of them and their entire families. All of this can provoke severe anxiety and distress. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/understanding-the-ndis-many-eligible-people-with-disabilities-are-likely-to-miss-out-61016">Understanding the NDIS: many eligible people with disabilities are likely to miss out</a>
</strong>
</em>
</p>
<hr>
<p>It is not just the individual NDIS participant who feels the impact of packages being cut. One of the original drivers for the scheme was the argument that introducing the NDIS would prove a good return on investment because it would support more people with disability and their families to enter the workforce. </p>
<p>For many, the supports the NDIS has provided to their family members have allowed them to go back to work. But there have been several <a href="https://www.theguardian.com/australia-news/2021/nov/28/perth-mother-may-have-to-quit-work-to-care-for-autistic-son-after-ndis-package-cut-by-70">recent media stories</a> about family members who are going to have to quit work following NDIS cuts and move on to welfare payments. While costs to the NDIS might be lower, the overall government spend will be higher. </p>
<h2>More changes ahead</h2>
<p>For some, the cuts to plans will also be accompanied by changes that are being made to the <a href="https://www.ndis.gov.au/providers/pricing-arrangements/pricing-updates">NDIS Price Guide</a>. From the <a href="https://teamdsc.com.au/resources/major-schads-changes-expected-july-2022">middle of this year</a>, disability service workers will need to be paid for a shift that is at least two hours long rather than the previous one hour.</p>
<p>Those who work broken shifts will also get an additional allowance and changes are being made around client cancellation rules. All of these mean participants may find their plans do not go as far as they did before. NDIS participants may be in for a more tough time than ever in the months ahead.</p>
<p>Everyone wants a financially sustainable NDIS, most of all people with disability and their families, but this cannot be achieved by simply cutting individual budgets and causing trauma for people with disability and their families.</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>
<img src="https://counter.theconversation.com/content/179748/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Helen Dickinson receives funding from ARC, NHMRC, ACT government, ANZSOG and CYDA.</span></em></p><p class="fine-print"><em><span>Anne Kavanagh receives funding from NHMRC, ARC, ANROWS, Commonwealth government and Victorian government. </span></em></p>Reports of cuts to NDIS packages have been confirmed with an average drop of 4% across participants.Helen Dickinson, Professor, Public Service Research, UNSW SydneyAnne Kavanagh, Professor of Disability and Health, Melbourne School of Population and Global Health, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1760132022-03-17T19:04:13Z2022-03-17T19:04:13ZFriday essay: single parenting with a disability – how my 9-year-old daughter became my carer in shining armour<figure><img src="https://images.theconversation.com/files/444728/original/file-20220207-17-ebwg5d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Shakira Hussein (seated in chair) with daughter Adalya Nash Hussein. Photo by Leah Jing McIntosh.</span> <span class="attribution"><span class="license">Author provided</span></span></figcaption></figure><p>My daughter started to describe me as <em>disabled</em> long before I was ready to do so myself. For several years after my diagnosis with remitting-relapsing multiple sclerosis, the most I was prepared to concede was that I had “a potentially disabling disease”, and having endured years of misdiagnosis and uncertainty, I wasn’t entirely confident that even this much was true.</p>
<p>Perhaps the neurologist who had dismissed the right-sided weakness that rendered me unable to walk without support as “a psychiatric issue” would turn out to have been right after all, notwithstanding the MRI that had revealed lesions scattered across my brain, or the lumbar puncture that had detected inflation in my cerebrospinal fluid. </p>
<p>Anyway, even if I did have MS, I was undergoing treatment that would hopefully hold it in check. I was sometimes temporarily disabled, I might be permanently disabled at some undefined point in the future, I was self-injecting my prescribed medication on a daily basis in order to ward off disability. But I was not actually disabled – not yet.</p>
<p>Adalya didn’t see the need for this type of tiptoeing around. “I’m sick of the soft, caring voices,” she complained as our lives were flooded with healthcare professionals, support workers and counsellors in the wake of The Diagnosis, but she understood their basic message clearly enough. Her mother was <em>disabled</em> and she was a nine-year-old <em>young carer</em>. For which, read: guardian, defender, bodyguard.</p>
<figure class="align-center ">
<img alt="Woman with young daughter, standing affectionately entwined, together in living area." src="https://images.theconversation.com/files/444700/original/file-20220207-17-1wmv3yp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/444700/original/file-20220207-17-1wmv3yp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=898&fit=crop&dpr=1 600w, https://images.theconversation.com/files/444700/original/file-20220207-17-1wmv3yp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=898&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/444700/original/file-20220207-17-1wmv3yp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=898&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/444700/original/file-20220207-17-1wmv3yp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1129&fit=crop&dpr=1 754w, https://images.theconversation.com/files/444700/original/file-20220207-17-1wmv3yp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1129&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/444700/original/file-20220207-17-1wmv3yp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1129&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Shakira Hussein and Adalya, when the latter was her young carer and little walking stick.</span>
<span class="attribution"><span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>Adalya’s father had lived in Turkey since her early childhood, but we were very far from alone in the world. My brother and his wife lived around the corner from us in Canberra, my mother would fly down from Queensland to help out during moments of crisis, friends provided us with nourishing and delicious Indonesian, Malaysian and Lebanese meals. If we needed extra help, we only had to ask. But Adalya didn’t believe that anyone else could look after me as well as she could. She certainly didn’t trust me to look after myself.</p>
<p>Multiple sclerosis was not our only adversary. John Howard’s government was determined to force single mothers to shift from welfare to work and to punish Muslims for our failure to uphold “Australian values”. My PhD thesis on Muslim women and transnational feminism was years overdue for completion. The income I earned from tutoring and freelance writing was not enough to free us from dependence on Centrelink payments. <em>A disabled, brown-skinned, Muslim, welfare-dependent single mother sounds like a hate figure from an Andrew Bolt column</em>__, I thought gloomily to myself. Although of course, I wasn’t really disabled. Not yet.</p>
<h2>‘I’m her little walking stick!’</h2>
<p>When the MS was in remission, Adalya’s caring responsibilities were relatively light. But during flares, she took charge of the household duties, from grocery shopping to meal preparation to washing up. And having taken control, she would decide that the entire system needed an overhaul and set about emptying cupboards, rearranging storage space, consulting the internet for advice on cooking techniques and cleaning hacks, as I lay on the sofa, immobilised by pain and fatigue. By the time the flares subsided, she had become extremely territorial over what she now regarded as “her” domestic space and resisted any attempt to overturn her reforms.</p>
<p>“<em>That’s not where the garam masala goes!</em>”</p>
<p>“Since when? It’s always been—”</p>
<p>“Not anymore! I set up a new system!”</p>
<p>She was just as assertive when we were out and about. “I’m her little walking stick!” she would announce, fending off anyone else who offered me physical assistance. And in fact, I did prefer to use my daughter’s shoulder for support rather than be manhandled by whatever knight-in-shining-armour had decided to help out, as often as not by placing his hand on my bum.</p>
<p>“Adalya is very protective,” a friend commented.</p>
<p>“Only when it’s my <em>mother</em>!” she retorted.</p>
<p>I didn’t mind waiting in line to check in at airports (after all, I wasn’t disabled), but Adalya would march up to the counter to explain that her mother had multiple sclerosis and was in need of special assistance during our travels. Even I found her equal parts endearing and annoying, but so far as the airline staff were concerned she was 100 per cent adorable. Such a grown-up, sensible little girl looking after her disabled, brown-skinned-and-therefore-presumably-non-English-speaking mother! There was nothing I could do but settle back in the airport wheelchair and glare in Muslim as Adalya explained my lunchbox cooler full of prefilled syringes to the security staff.</p>
<p>She would sit in the audience during forums on the “the Muslim issue”, quietly reading her book but ready to leap into action if required. “Don’t think that you can pick on my mother just because she’s disabled! She’s still got a daughter who can beat you up!” she intervened during one particularly fraught community meeting. Of course, we all just laughed fondly. That cute little girl wasn’t strong enough to beat anyone up (and anyway, I wasn’t really disabled).</p>
<p>Although, after more flares, another round of MRIs that showed new lesions and a recommendation from my neurologist to switch to more aggressive medication, I was eventually convinced that I did, in fact, have multiple sclerosis.</p>
<figure class="align-center ">
<img alt="A young girl embraces her seated mother, who kisses her cheek, as an older woman looks on nearby." src="https://images.theconversation.com/files/444703/original/file-20220207-501-1vn32y0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/444703/original/file-20220207-501-1vn32y0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=405&fit=crop&dpr=1 600w, https://images.theconversation.com/files/444703/original/file-20220207-501-1vn32y0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=405&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/444703/original/file-20220207-501-1vn32y0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=405&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/444703/original/file-20220207-501-1vn32y0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=509&fit=crop&dpr=1 754w, https://images.theconversation.com/files/444703/original/file-20220207-501-1vn32y0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=509&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/444703/original/file-20220207-501-1vn32y0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=509&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Shakira Hussein and daughter Adalya.</span>
<span class="attribution"><span class="license">Author provided</span></span>
</figcaption>
</figure>
<h2>‘I don’t want anyone to think we’re not coping’</h2>
<p>If there was a support group for parents whose offspring are excessively mature and responsible, I didn’t know where to find it. And it wasn’t a problem that got you much sympathy at the school gate. But I couldn’t help feeling that Adalya was far too well-behaved for her own good. Her good conduct was a side effect of the multiple sclerosis and all the turmoil it had wrought. She simply couldn’t afford to rock our family boat, for fear that it would sink to the bottom of the ocean. And she rebuffed offers of help from outsiders out of concern that our two-person household would be judged and found wanting.</p>
<p>“I don’t want anyone to think that we’re not coping,” she told me as she straightened out the living room.</p>
<p>“She’d rather clean the kitchen with her own tongue than let anyone else across the threshold to help,” I confided to friends. “And other people have started taking advantage of her caring streak as well – neighbours, the parents of some of her friends. It’s going to make her a magnet for every shitty male on the planet.”</p>
<p>Her plans for the future were built on the assumption that her role as my carer was only going to become more demanding over time. “When I grow up, I want to have an interesting job, like a writer or an artist. Not just a job that makes a lot of money. But I want to earn enough money to be able to look after you.”</p>
<p>“Oh sweetheart, you’re not going to have to look after me. I’ll be okay.”</p>
<p>“Don’t worry, I’m not going to spend all my money on you,” she reassured me. “I’ll need to save some of it for my own children.”</p>
<p>As touched as I was by this vision of Adalya as the breadwinner for me and my future grandchildren, I didn’t want her life plans to be dominated by her role as a young carer. The multiple sclerosis had made a train wreck of my own career aspirations; I refused to let it blight hers as well. I tried to reset out relationship by telling her that while I was the captain of the household ship, she was my trustworthy First Mate. She did not take this demotion well.</p>
<p>“You talk to me as though I’m the bloody cabin boy!”</p>
<p>Mutiny was only avoided by acknowledging that I had overstepped the boundaries of my authority. How could I claim to be the captain, when I spent so much time below deck?</p>
<h2>Calling out ableism while avoiding inspiration porn</h2>
<p>“Good anecdote, bad reality.” Carrie Fisher’s words of wisdom had long been my talisman when dealing with difficult experiences, whether in the form of racism or misogyny or both. But multiple sclerosis was a bad reality that made for a fucking boring anecdote, so far as I was concerned. For the first time in my life, I was confronted by a difficult experience that I had absolutely no desire to write about. </p>
<p>Most of what I’d read about disability was what Stella Young would later term “inspiration porn”. I had no desire to write, let alone star in, that type of motivational feel-good story. Besides which, there were long periods of time when I was physically incapable of writing anything at all – when my vision was too blurred to read, my malfunctioning motor skills compromised my ability to type, when the vertigo was so severe that even turning my head on my pillow was enough to make me throw up and the pain was too all-consuming to allow space for coherent thought.</p>
<p>And once I’d recovered, there always seemed to be more urgent topics to write about than multiple sclerosis. My body had not been injured in a US drone attack on my family’s village or poisoned by toxic chemicals due to negligence by a multinational corporation. It was just enduring friendly fire from the autoimmune system that was supposed to protect it. It hardly seemed important enough to be worth writing about. And anyway, I had a thesis to finish.</p>
<p>But as the multiple sclerosis occupied more and more of my time and attention, I began to recognise the parallels between ableism and my familiar territory of racism and sexism. While the multiple sclerosis was not an injustice in itself, I had experienced injustices during the long, bumpy, road to diagnosis and in the difficulties that I faced in obtaining timely support and treatment.</p>
<p>Reading disabled writers like Harriet McBryde Johnson and Stella Young made me realise that it was possible to write about disability without indulging in inspiration porn. Which was convenient, as the continued onslaughts against my body meant that I could no longer kid myself that I wasn’t really disabled.</p>
<h2>Multiple sclerosis ‘as much a part of’ my daughter’s identity as mine</h2>
<p>Adalya had inherited my graphomania, filling notebook after notebook with (I assume) deep and meaningful thoughts. Emotional conversations would end with her stomping off to her bedroom, declaring “another chapter for the tragi-comic coming of age memoir!” as she slammed the door behind her. I longed to take a sneak preview, but the hand-drawn snarling gargoyles on the notebook covers, alongside proclamations of PRIVATE, TOP SECRET and KEEP OUT, were enough to deter me.</p>
<p>But the realisation that she sometimes featured in my own published writing prompted her to go public with her own. She demanded right of reply to an article that I published after Julia Gillard became Australia’s first female prime minister, in which I’d described Adalya as ‘yelping about #historyinthemaking! as part of a bid for a #dayoffschool and a #triptoParliamentHouse’.</p>
<p>“You quoted things I said when I was asleep! You never quote things that make me sound awesome!”</p>
<p>She channelled her indignation into writing what the editor described as an “out-of-the-mouths-of-babes thing” about the importance of compassion in politics and the lack of it in then Opposition leader Tony Abbott. Not bad for a first-timer, I thought. She certainly proved that she wasn’t just using one of the most important events in Australia’s political history as an excuse to skip school for the day.</p>
<p>I learnt my lesson from my mistake and was careful to obtain her consent when I was invited to contribute to an anthology about motherhood a few years later. However, by the time the proofs came through, she had long since forgotten that conversation.</p>
<p>“What the— I never gave you permission to write about this!”</p>
<p>“Yes, you did. You asked me whether it was a paid gig and when I said it was, you said ‘go for it!’”</p>
<p>“Look, I gotta say that does sound like you,” one of her friends agreed, and Adalya grudgingly conceded that it sounded like a plausible scenario. A scenario that that once again provided her with the pretext to exercise her right of reply. “Just another side of the story,” she told me as she sat down to write an essay for a youth literary journal about growing up with a mother with multiple sclerosis. At nineteen, she was ready to provide a public preview of the tragi-comic coming-of-age memoir we had joked about for so long.</p>
<p>I read it with a sense of trepidation. Of course, I had lived through the events she described, but that didn’t make it any less difficult to read about them in my daughter’s voice. Clearly I had failed in my attempts to quarantine her from the impact of multiple sclerosis. It had become as much a part of her identity as it is of mine. But I have no complaints about the thoughtful, generous and incidentally funny young woman who wrote that essay.</p>
<blockquote>
<p>In some way, it feels as though every facet of my life has been shaped by my mother’s health.</p>
<p>As her nerve cells were eroded by her body, I was built from the tools I tried to fix her with – tools forged from my mother’s raw materials; her thirst for understanding, her front of fearlessness to everyone including herself.</p>
</blockquote>
<p>Today Adalya’s life has expanded: her concerns for my day-to-day welfare abated enough for her to move away from home to live with her partner. She was quick to reassure me that that she would continue to be available to support me when required, living a short distance away in a home with an accessible bathroom and a ground floor bedroom for me to sleep in, if need be. I couldn’t “cure” her of her role as a young carer, any more than I could cure myself of disability.</p>
<p>She has not so much grown out of that role as grown beyond it. And while I continue to make occasional cameo appearances in her writing as the comical, eccentric mother, she now publishes on topics ranging from music to art to women in science. The full-length version of her tragi-comic coming-of-age memoir remains unwritten … so far as I know.</p>
<p><em>This is an extract from <a href="https://www.blackincbooks.com.au/books/weve-got">We’ve Got This</a>, edited by Eliza Hull (Black Inc.)</em></p><img src="https://counter.theconversation.com/content/176013/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Shakira Hussein is a board member for Women with Disabilities Victoria. She received a 2021 grant from the Neila Sidney Travel Awards (not sure whether or not that's relevant but thought it was worth including just in case).</span></em></p>Disabled single mother Shakira Hussein reflects on her secret weapon against adversity. Adalya, her ‘excessively mature’ daughter, appointed herself her mother’s carer and fierce protector from age 9.Shakira Hussein, McKenzie Postdoctoral Fellow; Writer and researcher, National Centre for Excellence in Islamic Studies, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1734122022-01-12T20:31:25Z2022-01-12T20:31:25ZWarehousing disabled people in long-term care homes needs to stop. Instead, nationalize home care.<figure><img src="https://images.theconversation.com/files/440303/original/file-20220111-17-r625zy.JPG?ixlib=rb-1.1.0&rect=32%2C0%2C5435%2C3893&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Jonathan Marchand, a 43-year-old man living with muscular dystrophy, protested in a cage near the Québec legislature, in Québec City, on Aug. 13, 2020. </span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Mathieu Belanger </span></span></figcaption></figure><iframe style="width: 100%; height: 175px; border: none; position: relative; z-index: 1;" allowtransparency="" src="https://narrations.ad-auris.com/widget/the-conversation-canada/warehousing-disabled-people-in-long-term-care-homes-needs-to-stop--instead--nationalize-home-care-" width="100%" height="400"></iframe>
<p>The failures in both private and publicly funded long-term care (LTC) homes in Canada have led to <a href="https://interpares.ca/resource/impact-covid-19-canadas-long-term-care-homes-and-recommendations-change">15,000 COVID-19 deaths</a>. Calls to reform LTC <a href="https://www.ontariohealthcoalition.ca/index.php/advocates-call-for-national-long-term-care-standards/">through nationalization</a> have become widespread, garnering <a href="https://cupe.ca/cupe-launching-campaign-make-long-term-care-public">support from unions</a>, <a href="https://canadians.org/analysis/time-make-national-strategy-long-term-care">national advocacy organizations</a> and <a href="https://www.ndp.ca/long-term-care">political parties</a>. </p>
<p>While LTC is often considered to be a necessary institution to support the complex medical care needs of seniors, LTC facilities are used <a href="https://www.ontariohealthcoalition.ca/index.php/younger-disabled-people-hurt-by-patchwork-system-of-long-term-care/">to warehouse disabled people who require 24-hour care, regardless of age</a>. And nationalizing LTC fails to adequately resolve the ableism of warehousing disabled people, ultimately maintaining the unjust and inadequate structures of care. </p>
<p>LTC <a href="https://www.thestar.com/news/gta/2017/07/09/thousands-of-under-65-adults-with-physical-disabilities-are-being-forced-into-ontario-nursing-homes-ministry-data.html">is debilitating for disabled people</a> who are forced to rely on institutionalized daily care. It is time to abolish LTC in Canada. </p>
<p>It’s time to dismantle and replace the LTC system with deinstitutional options that prioritize the flourishing of disabled people and meet the complex care needs of older and younger disabled people outside the confines of institutions. </p>
<h2>Warehousing disabled people</h2>
<p>At the forefront of the call to abolish LTC facilities in Canada is the <a href="https://www.djno.ca/">Disability Justice Network of Ontario</a>, a disability-run organization based out of Hamilton that advocates for accessible and fulfilling living conditions for disabled people. </p>
<p>Its most recent <a href="https://www.djno.ca/abolish-ltc">campaign to abolish LTC</a> seeks legislative action to deinstitutionalize the nearly <a href="https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=1310082901&pickMembers%5B0%5D=1.1&pickMembers%5B1%5D=2.2&pickMembers%5B2%5D=3.1&pickMembers%5B3%5D=5.1">200,000 disabled people (including 260 children under the age of 18)</a> living in LTC and begin closing all institutions with records of harm and violence. </p>
<p>They are also calling on leaders to support the nationalization of home care, palliative care, pharmacare and accessible housing that would give disabled younger and older people the option to choose where and how to live in the community with fully funded supports. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/canadians-want-home-care-not-long-term-care-facilities-after-covid-19-170620">Canadians want home care, not long-term care facilities, after COVID-19</a>
</strong>
</em>
</p>
<hr>
<p>The government’s ongoing reliance to confine intellectually, developmentally and physically disabled young people in LTC facilities has been met with protest by the system’s young disabled occupants who demand deinstitutionalization — like <a href="https://www.theglobeandmail.com/opinion/article-a-long-term-care-home-is-no-place-for-younger-people-with-disabilities/">Jonathan Marchand</a> in Québec, <a href="https://broadview.org/young-people-with-disabilities-long-term-care/">Vicky Levack</a> in Nova Scotia and <a href="https://www.lockedoutoflife.com/">Tyson Sylvester</a> in Manitoba. </p>
<p>In June 2018, <a href="https://www.lockedoutoflife.com/stories/tysons-story/">Sylvester</a> constructed a prison cell in downtown Winnipeg to protest the way in which the Manitoba care system “locked him out of his own life.” </p>
<p>Marchand similarly camped out in a makeshift cage on the lawn of Québec’s National Assembly in August 2020, and in August 2021 was able to <a href="https://www.cbc.ca/news/canada/montreal/jonathan-marchand-assisted-living-1.6174288">move into his own apartment</a> after receiving in-home support. </p>
<figure class="align-center ">
<img alt="A woman wears a pink shirt and looks at the camera. She has purple glasses." src="https://images.theconversation.com/files/440307/original/file-20220111-21960-1ng927y.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/440307/original/file-20220111-21960-1ng927y.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/440307/original/file-20220111-21960-1ng927y.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/440307/original/file-20220111-21960-1ng927y.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/440307/original/file-20220111-21960-1ng927y.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/440307/original/file-20220111-21960-1ng927y.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/440307/original/file-20220111-21960-1ng927y.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Vicky Levack is a spokeswoman for the Disability Rights Coalition.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Michael Tutton</span></span>
</figcaption>
</figure>
<p>In addition to the urgent calls for change coming from young disabled people caged in LTC institutions, the deplorable living and working conditions of LTC facilities in Canada has also been well documented in over <a href="https://doi.org/10.1139/facets-2020-0056">150 scathing reports</a>. </p>
<p>The scope of <a href="https://www.cbc.ca/news/canada/ottawa/canada-record-covid-19-deaths-wealthy-countries-cihi-1.5968749">death recorded in LTC facilities</a> during the pandemic is yet another marker of the system’s inability to provide the necessary care and support for its wide-ranging clients. However, the harm experienced by older and younger disabled people who continue to live in these spaces deserves action as much as condemnation. </p>
<h2>Prisons by a different name</h2>
<p>Nationalizing LTC, sometimes referred to as publicizing the system, would undoubtedly take profits out of LTC and may create system-wide changes to improve residents’ conditions. However, these calls ignore the fundamental character of LTC facilities as an <a href="https://winnipegpolicecauseharm.org/blog/on-prisons-and-personal-care-disabled-confinement-and-covid-19/">extension of the carceral state</a>, essentially prisons by a different name. </p>
<p>For example, LTC facilities frequently use <a href="https://theconversation.com/theres-no-need-to-lock-older-people-into-nursing-homes-for-their-own-safety-73954">carceral mechanisms of control</a> such as the use of psychotropic medication, locking residents in their rooms and the use of physical restraints. </p>
<p>Residents are not able to choose what and when they eat, when they wake up or bathe, or when they can have visitors. LTC institutions seek to maximize resident surveillance and control while minimizing staffing costs. </p>
<p>In order to create a national home care program, workers need higher pay, job security and robust benefits. When working conditions are poor, staff shortages will occur whether due to low pay, precarious hours and physically demanding work, or because of workplace injury or illness (as with <a href="https://twitter.com/withfilesfrom/status/1478405544260079621">workplace COVID-19 exposure</a>). </p>
<p>Staffing shortages mean that disabled people <a href="https://toronto.ctvnews.ca/inspection-at-toronto-ltc-home-underway-after-woman-feels-need-to-call-ambulance-for-sick-father-1.5681607">do not receive adequate or consistent care</a>, resulting in malnutrition, dehydration or untreated bed sores. Abolishing LTC is about establishing better working and living conditions for both care workers and disabled people. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/long-term-care-after-the-covid-19-disaster-3-promising-ways-to-move-forward-164682">Long-term care after the COVID-19 disaster: 3 promising ways to move forward</a>
</strong>
</em>
</p>
<hr>
<p>Philosopher Shelley Tremain <a href="https://biopoliticalphilosophy.com/2021/02/16/the-carceral-character-of-nursing-homes-and-how-eugenics-in-canada-is-maid/">refers to publicly owned nursing homes as</a> the “window-dressing” of the nursing home industrial complex that “operates in the service of ableism, ageism and racism.” </p>
<p>It is clear that regardless of ownership — by private corporations or public agencies — the warehousing, caging and incarcerating of older and younger disabled people is an act of violence. </p>
<p>In Canada, solidarity is building between prison abolitionist movements and disability justice over the <a href="https://www.ubcpress.ca/disability-injustice">shared injustices of incarceration in prisons and disabled people’s institutional confinement</a>. These movements help us build the political will necessary to move toward a world with no more LTC institutions. </p>
<p>We must support disabled people’s call to abolish LTC and develop a national home care, palliative care and pharmacare system that robustly funds and prioritizes disabled older and younger people’s desire to live in community.</p><img src="https://counter.theconversation.com/content/173412/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>We must support disabled people’s call to abolish long-term care and develop a national home care, palliative care and pharmacare system that funds and prioritizes their desire to live in communities.Kelly Fritsch, Assistant Professor, Sociology and Anthropology and Director of the Disability Justice and Crip Culture Collaboratory, Carleton UniversityFady Shanouda, Assistant Professor, Critical Disability Studies, Carleton UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1647072021-07-20T03:25:17Z2021-07-20T03:25:17ZWhen COVID is behind us, Australians are going to have to pay more tax<figure><img src="https://images.theconversation.com/files/412060/original/file-20210720-25-zuxlcu.jpg?ixlib=rb-1.1.0&rect=40%2C307%2C3385%2C2063&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Australian Tax Office</span> </figcaption></figure><p>The biggest unstated message from the <a href="https://treasury.gov.au/publication/2021-intergenerational-report">intergenerational report</a> released during the lull between lockdowns is that we will need more tax.</p>
<p>Not now. At the moment it’s a matter of throwing everything we’ve got at getting on top of the COVID outbreaks and worrying about how to (and the extent to which we will need to) pay for it later.</p>
<p>But when the economy is healthy again, taxes are going to have to rise, big time. </p>
<p>That the intergenerational report doesn’t say so explicitly might be because the government is sticking with its arbitrary and implausible guarantee that tax collections will never climb above <a href="https://www.afr.com/policy/tax-and-super/scott-morrisons-tax-cap-straitjacket-starts-to-bite-20180502-h0zj9t">23.9% of GDP</a>, which is the average between the introduction of the goods and services tax and the global financial crisis.</p>
<p>Or it might be because what’s needed sits oddly with legislated high-end tax cuts likely to cost <a href="https://www.smh.com.au/politics/federal/pandemic-will-help-make-stage-3-tax-cuts-cheaper-20210507-p57pzg.html">$17 billion</a> per year from 2024-25.</p>
<p>Among the drivers of increased government spending identified by the report is spending on health, at present 4.6% of gross domestic product, and on the report’s projections set to climb to 6.2% over the next 40 years.</p>
<h2>We’ll want better health</h2>
<p>To fund that alone the government will need to collect 6% more tax in 2061 than had spending on health stayed where it was as a proportion of GDP.</p>
<p>Perhaps surprisingly, most of the extra spending on health won’t be a direct result of the population ageing. It’ll be because health technologies are getting better and becoming much, much more expensive (à la the COVID vaccines). And because incomes are rising. </p>
<p>Rising incomes, the report explains, are the largest driver of government spending on health internationally. </p>
<p>That’s because for some things, including the provision of hospitals, private spending can’t cut it, no matter how well off you are. </p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/412054/original/file-20210720-19-tbn5yv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/412054/original/file-20210720-19-tbn5yv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/412054/original/file-20210720-19-tbn5yv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=975&fit=crop&dpr=1 600w, https://images.theconversation.com/files/412054/original/file-20210720-19-tbn5yv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=975&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/412054/original/file-20210720-19-tbn5yv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=975&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/412054/original/file-20210720-19-tbn5yv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1226&fit=crop&dpr=1 754w, https://images.theconversation.com/files/412054/original/file-20210720-19-tbn5yv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1226&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/412054/original/file-20210720-19-tbn5yv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1226&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Australia’s richest man needed hospitals as much as anyone.</span>
<span class="attribution"><span class="source">AP</span></span>
</figcaption>
</figure>
<p>After billionaire Kerry Packer suffered a massive heart attack while playing polo in 1990, he was rushed to Sydney’s Liverpool Hospital.</p>
<p>When the ANU election survey began in 1990, 54% of Australians surveyed regarded health as “extremely important” in determining their vote. It’s now 70%. In 1990 11% regarded health as “not very important”. It’s now just <a href="https://australianelectionstudy.org/wp-content/uploads/Trends-in-Australian-Political-Opinion-1987-2019.pdf">2%</a>.</p>
<p>The intergenerational report has spending on aged care climbing from 1.2% to 2.1% of GDP, which by itself means the tax take will have to be 4% higher than otherwise, but it was prepared ahead of the government’s final response to the aged care royal commission. </p>
<p>The interim response had 14 (mostly expensive) recommendations subject to “<a href="https://www.health.gov.au/sites/default/files/documents/2021/05/australian-government-response-to-the-final-report-of-the-royal-commission-into-aged-care-quality-and-safety.pdf">further consideration</a>”.</p>
<p>The National Disability Insurance Scheme already accounts for one in 20 tax dollars collected and is set to overtake Medicare. </p>
<p>The report says the government’s response to the royal commission into disability care presently underway is likely to place “additional pressure” on costs.</p>
<h2>We’ll need to spend more than projected</h2>
<p>None of this extra spending is bad if it delivers value for money, and it’s what the public wants. But it is hard to reconcile with official projections in the report showing government spending climbing only 2.5% per year in real terms over the next 40 years, compared to 3.4% per year in the past 40.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/intergenerational-report-to-show-australia-older-smaller-in-debt-163474">Intergenerational report to show Australia older, smaller, in debt</a>
</strong>
</em>
</p>
<hr>
<p>The report gets there in part by an outrageous sleight of hand. It says JobSeeker and other payments will become tiny as a proportion of GDP because they will only climb with inflation (which is typically low) rather than wage growth or GDP growth (which is typically higher, and lines up with how the pension grows).</p>
<p>A moment’s reflection would show that if that actually happened for 40 years — which is what the treasury’s report assumes — JobSeeker would fall from 70% of the single age pension to a hard-to-justify 40%.</p>
<hr>
<p><strong>JobSeeker and age pension as projected in intergenerational report</strong></p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/412051/original/file-20210720-15-jrjreu.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/412051/original/file-20210720-15-jrjreu.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/412051/original/file-20210720-15-jrjreu.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=247&fit=crop&dpr=1 600w, https://images.theconversation.com/files/412051/original/file-20210720-15-jrjreu.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=247&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/412051/original/file-20210720-15-jrjreu.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=247&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/412051/original/file-20210720-15-jrjreu.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=310&fit=crop&dpr=1 754w, https://images.theconversation.com/files/412051/original/file-20210720-15-jrjreu.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=310&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/412051/original/file-20210720-15-jrjreu.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=310&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Payment for a single person, dollars per fortnight. JobSeeker indexed to IGR inflation projections, pension indexed to IGR wage projections.</span>
</figcaption>
</figure>
<hr>
<p>We know it won’t happen because it hasn’t happened. </p>
<p>JobSeeker was boosted this year after only <a href="https://theconversation.com/the-50-boost-to-jobseeker-will-take-australias-payment-from-the-lowest-in-the-oecd-to-the-second-lowest-after-greece-155739">20 years</a> rather than 40 in order to make sure that sort of thing wouldn’t happen.</p>
<p>And we know there’s nothing to stop an intergenerational report using more realistic assumptions. </p>
<p>The 2015 report, released at a time when the Abbott government planned to adjust the pension in line with the more miserly JobSeeker formula, relaxed the assumption after <a href="https://treasury.gov.au/publication/2015-igr">13 years</a> because if it left it in place the pension would slide untenably below community expectations.</p>
<h2>We’ll easily be able to afford more tax</h2>
<p>There’s nothing wrong with paying more tax if it’s for things we want, like better health care, better aged care, better disability care and benefits we can live on.</p>
<p>The intergenerational report has government spending climbing by four percentage points of GDP between now and 2061. But it also has real GDP per person almost doubling, climbing 80%.</p>
<p>Even if that’s an overestimate and GDP per person grows by, say, 50%, and the need for tax grows by more than four points, we’ll easily be able to afford the extra tax, and we’ll want what that tax will buy. Expectations climb with income.</p>
<p>The present government will be long gone by the time the tax to GDP ratio reaches its “cap” of 23.9% of GDP (which the report expects in 2035).</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/412057/original/file-20210720-15-13zncps.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/412057/original/file-20210720-15-13zncps.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/412057/original/file-20210720-15-13zncps.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=967&fit=crop&dpr=1 600w, https://images.theconversation.com/files/412057/original/file-20210720-15-13zncps.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=967&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/412057/original/file-20210720-15-13zncps.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=967&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/412057/original/file-20210720-15-13zncps.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1215&fit=crop&dpr=1 754w, https://images.theconversation.com/files/412057/original/file-20210720-15-13zncps.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1215&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/412057/original/file-20210720-15-13zncps.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1215&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Mathias Cormann has moved to the OECD where average tax rates are high.</span>
<span class="attribution"><span class="source">Ian Langsdon/EPA</span></span>
</figcaption>
</figure>
<p>The finance minister who came up with the cap, <a href="https://www.skynews.com.au/australia-news/politics/finance-minister-mathias-cormann-has-announced-a-tax-rule-for-the-turnbull-governments-budget-limiting-it-from-exceeding-a-threshold-of-239-per-cent-of-gpd/video/8d378e1aa4e3ca862a0c438d69484500">Mathias Cormann</a>, is now head of the Organisation for Economic Co-operation and Development, in which the average tax take is <a href="https://data.oecd.org/tax/tax-revenue.htm">34%</a> of GDP.</p>
<p>An obvious place to look for the tax is high-income senior citizens, at present enjoying tax-free super, <a href="https://theconversation.com/words-that-matter-whats-a-franking-credit-whats-dividend-imputation-and-whats-retiree-tax-111423">refundable franking credits</a> and special tax offsets. </p>
<p>Grattan Institute calculations suggest an older household earning $100,000 pays <a href="https://theconversation.com/intergenerational-reports-ought-to-do-more-than-scare-us-they-ought-to-spark-action-163505">less than half</a> the tax of a working-age household on the same amount.</p>
<p>Like the households of less well-off seniors, those households are highly likely to use the services tax provides.</p>
<p>To say we’ll need more tax is not to say the government needs to fund all of its spending with tax. </p>
<p>It is projecting budget deficits for the next <a href="https://theconversation.com/intergenerational-report-to-show-australia-older-smaller-and-more-in-debt-163474">40 years</a>. Budgets have been in deficit for all but a few of the <a href="https://theconversation.com/memories-in-1961-labor-promised-to-boost-the-deficit-to-fight-unemployment-the-promise-won-115376">past 100 years</a>.</p>
<p>But it will need to cover much of it with tax to keep the economy in check. If we want what tax provides, we’ll be prepared to pay it.</p><img src="https://counter.theconversation.com/content/164707/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Peter Martin 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 we want the latest health care, disability care and aged care, we’ll have to be prepared to pay for it.Peter Martin, Visiting Fellow, Crawford School of Public Policy, Australian National UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1601832021-05-05T20:08:02Z2021-05-05T20:08:02ZHere’s why the planned NDIS reforms discriminate against Aboriginal and Torres Strait Islander people<figure><img src="https://images.theconversation.com/files/398798/original/file-20210505-17-n05ttn.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5941%2C3957&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>The National Disability Insurance Scheme (NDIS) is one of the greatest human services reforms in Australia’s history, and holds great promise in improving the lives of hundreds of thousands of people with disability.</p>
<p>But the federal government’s proposed “independent assessments” aren’t the way forward for Aboriginal and Torres Straight Islander people with a disability. </p>
<p>I’m a Koori bloke from the Yuin Nation who lives with disability and has a research career spanning nearly 20 years. The biggest problem I have with the proposed framework is that it’s disrespectful and discriminatory towards Aboriginal and Torres Strait Islander people.</p>
<p>Rather than designing another layer of bureaucracy, I recommend the National Disability Insurance Agency (NDIA) invests more resources into building and up-skilling the current NDIS planning workforce and the Aboriginal community-controlled services sector.</p>
<p>Aboriginal and Torres Strait Islander people with disability have a right to use health specialists with whom they have an established relationship. As such, the government should invest more resources into the health workforce to build consistency in the NDIS planning process.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/dehumanising-and-a-nightmare-why-disability-groups-want-ndis-independent-assessments-scrapped-156941">'Dehumanising' and 'a nightmare': why disability groups want NDIS independent assessments scrapped</a>
</strong>
</em>
</p>
<hr>
<h2>What are these reforms again?</h2>
<p>Currently, people seeking access to the NDIS are required to work with their health professionals to see if they’re eligible. After this, they work with the NDIS, or an NDIA-funded agency partner, to design a funded package.</p>
<p>The federal government’s proposed independent assessments <a href="https://www.abc.net.au/news/2021-03-11/disability-organisations-against-ndis-independent-assessments/13233838">would see</a> a government-approved health professional unknown to the person with disability visit to determine their eligibility for the NDIS and the amount of funding they would receive. The meetings would take as long as three hours, or longer if there’s a disagreement between the assessor and the applicant’s family.</p>
<p>New NDIS minister Linda Reynolds <a href="https://www.sbs.com.au/news/amid-enormous-backlash-the-government-hits-pause-on-ndis-independent-assessments">put on hold</a> the reforms in April amid widespread backlash, although this week she promised “<a href="https://www.theguardian.com/australia-news/2021/may/03/linda-reynolds-says-coalition-will-keep-some-form-of-independent-ndis-assessments">some form</a>” of independent assessments will go ahead.</p>
<p>The NDIA <a href="https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-pilot">justification</a> for the independent assessments is:</p>
<blockquote>
<p>To decide whether a person is eligible for the NDIS and the kinds of supports they receive, we need to have consistent and reliable evidence that captures detail of their functional capacity, and the environment in which they live.</p>
</blockquote>
<p>Critics say the reforms are a <a href="https://www.abc.net.au/news/2021-03-11/disability-organisations-against-ndis-independent-assessments/13233838">cost-cutting exercise</a> in response to the cost blow-out of the NDIS, and warn the changes will make it harder for people to access the scheme. </p>
<h2>The model is discriminatory</h2>
<p>The proposed independent assessment model is discriminatory to Aboriginal and Torres Strait Islander people.</p>
<p>The model would further disadvantage Aboriginal and Torres Strait Islander people living in remote and rural areas, who rely on visiting professionals and e-health service models. It already takes months or even years to get into the NDIS and complete the planning process. The proposed model adds another hurdle and will likely extend the time frame for NDIS assessments for Aboriginal and Torres Strait Islander families.</p>
<p>The first independent assessment pilot program was conducted in 2018, and <a href="https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-pilot">only 1% of 513 people involved were Aboriginal and Torres Strait Islander people</a>. And during the second pilot, before it was paused in March 2020 due to the COVID-19 pandemic, only 4% of the 99 people involved were Aboriginal and Torres Strait Islander people. This participation rate is inadequate. </p>
<p>None of the <a href="https://www.ndis.gov.au/news/6118-independent-assessment-panel-announced">eight NDIA-funded organisations</a> delivering the independent assessments are Aboriginal community-controlled. Adding salt to the wound, the NDIA <a href="https://www.ndis.gov.au/participants/independent-assessments/independent-assessors">says</a> these agencies:</p>
<blockquote>
<p>[…] understand and have experience of the disability population in their local area, including Aboriginal and Torres Strait Islander and Culturally and Linguistically Diverse (CALD) groups and communities.</p>
</blockquote>
<figure class="align-center ">
<img alt="Aboriginal flag" src="https://images.theconversation.com/files/398801/original/file-20210505-15-46fchc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/398801/original/file-20210505-15-46fchc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=458&fit=crop&dpr=1 600w, https://images.theconversation.com/files/398801/original/file-20210505-15-46fchc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=458&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/398801/original/file-20210505-15-46fchc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=458&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/398801/original/file-20210505-15-46fchc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=576&fit=crop&dpr=1 754w, https://images.theconversation.com/files/398801/original/file-20210505-15-46fchc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=576&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/398801/original/file-20210505-15-46fchc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=576&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Many Aboriginal and Torres Strait Islander people would prefer to work with health professionals they already have a relationship with, rather than government-approved workers they’ve never met.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
</figcaption>
</figure>
<p>Simply giving professionals training in cultural competence or cultural safety isn’t enough to establish a culturally safe NDIS environment. </p>
<p>It’s unknown if there’s a requirement for the independent assessment agencies to have Aboriginal workers or Aboriginal allied-health assistants.</p>
<p>Most of the suite of independent assessment tools haven’t been rigorously tested or evaluated for their application with Aboriginal and Torres Strait Islander families. Assessment tools should be evaluated with Aboriginal and Torres Strait Islander families to ensure they’re applicable for cultural and social norms before they are endorsed by governments.</p>
<p>The <a href="https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-framework">NDIA says</a> some of these tools are linked to the World Health Organization’s International Classification of Functioning, Disability and Health, which is a framework for classifying disability and functioning. <a href="https://search.informit.org/doi/pdf/10.3316/informit.751842945817584">My research</a> shows the framework hasn’t been evaluated with Aboriginal and Torres Strait Islander communities during its development, except <a href="https://www.aihw.gov.au/getmedia/8efcd943-ec2f-48a7-a7c8-c81b887e7dc7/5-icidh-ind.doc.aspx">one small study in the Northern Territory</a>.</p>
<p>In my professional view, the framework needs to be “Indigenised” to ensure NDIS assessment models are respectful for Aboriginal and Torres Strait Islander people.</p>
<h2>A trusting relationship with a health professional is key</h2>
<p>Aboriginal and Torres Strait Islander people <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports">currently represent</a> nearly 7% of all NDIS package holders. According to Australian Bureau of Statistics data from 2015, the rate of disability in the Aboriginal and Torres Strait Islander population is <a href="https://www.abs.gov.au/ausstats/abs@.nsf/Previousproducts/4430.0Main%20Features802015?opendocument&tabname=Summary&prodno=4430.0&issue=2015&num=&view=">nearly twice</a> that of the non-Indigenous population.</p>
<p><a href="http://healthbulletin.org.au/articles/twelve-factors-that-can-influence-the-participation-of-aboriginal-people-in-disability/">My research</a> found Aboriginal and Torres Strait Islander people often have a high level of distrust of government systems due to a history of racism and child removal, meaning many don’t engage with disability services. However, generally, Aboriginal and Torres Strait Islander people engage with disability service providers if they have an established relationship with a worker in that organisation.</p>
<p>In some cases, Aboriginal and Torres Strait Islander people prefer Aboriginal and Torres Strait Islander workers over non-Indigenous workers. GP Debra Blackmore, who works for the Victorian Aboriginal Health Service, <a href="https://www.sbs.com.au/news/doctor-with-patients-from-stolen-generations-fears-ndis-reforms-will-be-traumatic-and-triggering">explained this perfectly</a> in a submission to a parliamentary inquiry into the independent assessments, stressing:</p>
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<p>[…] the importance of long-term therapeutic relationships in building trust, understanding nuances of communication, creating culturally safe spaces and ensuring patients feel safe and confident enough to appropriately express their needs and concerns.</p>
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<p>The proposed independent assessments are the antithesis of Aboriginal and Torres Strait Islander cultural models of health and disability. The proposed model is purely based on the medical model of disability and it excludes Aboriginal and Torres Strait Islander cultural nuances of the social experiences of disability. What’s more, the independent assessment meetings <a href="https://www.sbs.com.au/news/doctor-with-patients-from-stolen-generations-fears-ndis-reforms-will-be-traumatic-and-triggering">could trigger</a> post-traumatic stress disorder symptoms linked to a history of disablism, racism, stolen generations, and personal anxiety.</p><img src="https://counter.theconversation.com/content/160183/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>John Gilroy 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>As a Koori bloke who lives with disability, I believe the proposed framework is disrespectful and discriminatory towards Aboriginal and Torres Strait Islander people.John Gilroy, ARC Research Fellow in Indigenous Health, Disability and Community Development, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1594392021-04-25T20:08:25Z2021-04-25T20:08:25ZVaccinating the highest-risk groups first was the plan. But people with disability are being left behind<figure><img src="https://images.theconversation.com/files/396712/original/file-20210423-21-pn2tmw.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4732%2C3150&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>With Australia’s COVID vaccination campaign set to open up to over 50s <a href="https://www.abc.net.au/news/2021-04-22/vaccine-rollout-rethink-over-50-astrazeneca-explainer/100089002">on May 3</a>, many at-risk Australians <a href="https://www.health.gov.au/sites/default/files/documents/2021/02/covid-19-vaccination-covid-19-vaccination-phase-1a-rollout-presentation.pdf">eligible under phase 1A</a> are still waiting.</p>
<p>Last week we learned <a href="https://www.theguardian.com/australia-news/2021/apr/22/australians-with-a-disability-forgotten-in-coronavirus-vaccine-rollout-advocates-say">only 6.5%</a> of residents in disability care homes had received the vaccine.</p>
<p>Aged care is faring slightly better, with <a href="https://www.news.com.au/lifestyle/health/health-problems/shameful-federal-government-lashed-over-vaccine-black-hole/news-story/69bcf5058c010c2f59ac7944c2cabc31">roughly 30%</a> of aged-care facilities having received both vaccine doses. But that’s still some way to go.</p>
<p>Also worrying, <a href="https://www.actu.org.au/actu-media/media-releases/2021/actu-seeks-clarity-on-vaccine-plan-for-aged-care-disability-support-workers">an estimated</a> 15% of aged-care workers and only 1% of disability-care workers have so far been vaccinated.</p>
<p>Federal health department officials <a href="https://www.canberratimes.com.au/story/7217541/hunt-defends-disability-care-vaccine-rollout/">have conceded</a> the vaccine rollout in the disability sector is progressing more slowly than they would have liked.</p>
<p>But critics like shadow minister for the National Disability Insurance Scheme (NDIS) Bill Shorten have described the situation as reflecting a “<a href="https://www.smh.com.au/politics/federal/disability-homes-turn-to-gps-to-pick-up-vaccine-slack-for-vulnerable-residents-20210420-p57ktz.html">pathology of dangerous incompetence</a>” in the government’s treatment of vulnerable Australians.</p>
<p>After failing to address the needs of people with disability at the height of the pandemic last year, the poorly executed rollout in disability care does little to reassure this group the government has their best interests at heart.</p>
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Read more:
<a href="https://theconversation.com/4-ways-australias-covid-vaccine-rollout-has-been-bungled-158225">4 ways Australia's COVID vaccine rollout has been bungled</a>
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<h2>A high-risk group</h2>
<p>Australians with disability are at heightened risk <a href="https://www.who.int/news-room/fact-sheets/detail/disability-and-health">during the COVID pandemic</a> because many have other health conditions (for example, respiratory problems, heart disease, and diabetes). This makes them more likely to get sicker or die if they become infected.</p>
<p>People with disability are also more likely to be <a href="https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/summary">poorer, unemployed and socially isolated</a>, making them more likely to experience poor health outcomes.</p>
<p>Many people with disability, particularly those with complex needs, require personal support, which puts them in close contact with other people. Different workers will come through residential disability-care settings, sometimes moving between multiple homes and services, just as in aged care.</p>
<p>Should there be an outbreak of COVID-19 in residential disability care, there’s <a href="https://theconversation.com/lets-heed-the-warnings-from-aged-care-we-must-act-now-to-avert-a-covid-19-crisis-in-disability-care-144669">high potential for it to spread</a> because some residents may have difficulties with physical distancing, personal hygiene, and other public health recommendations.</p>
<p>In Victoria’s second wave we saw outbreaks linked to at least <a href="https://theconversation.com/lets-heed-the-warnings-from-aged-care-we-must-act-now-to-avert-a-covid-19-crisis-in-disability-care-144669">50 residential disability settings</a> among workers and residents. </p>
<figure class="align-center ">
<img alt="Two people with Down Syndrome cooking in the kitchen." src="https://images.theconversation.com/files/396715/original/file-20210423-21-ck61iq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/396715/original/file-20210423-21-ck61iq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/396715/original/file-20210423-21-ck61iq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/396715/original/file-20210423-21-ck61iq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/396715/original/file-20210423-21-ck61iq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/396715/original/file-20210423-21-ck61iq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/396715/original/file-20210423-21-ck61iq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">People with disability are at higher risk during the pandemic.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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<p>In other countries we’ve seen people with disability die from COVID-19 at higher rates than their non-disabled peers. In England, nearly <a href="https://www.bbc.com/news/uk-56033813">six out of every ten</a> people who died with COVID in 2020 were disabled, and this risk increases with level of disability.</p>
<p>While Australia has not seen these levels of deaths, the longer this group goes without being vaccinated, the longer they’re contending with this risk. Discussions about <a href="https://theconversation.com/whats-the-risk-if-australia-opens-its-international-borders-an-epidemiologist-explains-159208">reopening international borders</a> only serve to heighten fears.</p>
<p>Given the unique risks this group faces, the disability community fought hard to ensure disabled people living in residential care and their support workers were <a href="https://www.sbs.com.au/news/disability-advocates-are-urging-the-morrison-government-to-fix-australia-s-vaccine-rollout">included in phase 1A</a> of the vaccine rollout. </p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/people-with-a-disability-are-more-likely-to-die-from-coronavirus-but-we-can-reduce-this-risk-134383">People with a disability are more likely to die from coronavirus – but we can reduce this risk</a>
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<h2>Repeating previous mistakes</h2>
<p>Last year the disability royal commission was presented <a href="https://disability.royalcommission.gov.au/news-and-media/media-releases/disability-royal-commission-recommends-changes-following-covid-19-hearing">with extensive evidence</a> to show the Australian government had not developed policies addressing the needs of people with disability in their initial emergency response plans.</p>
<p>For example, while others on welfare payments received the COVID supplement, people with disability and their carers <a href="https://www.abc.net.au/news/2020-04-19/coronavirus-supplement-people-with-disability/12158526">were denied this</a>. </p>
<p>Many schools didn’t make appropriate adjustments so children with disability could <a href="https://theconversation.com/only-one-fifth-of-school-students-with-disability-had-enough-support-during-the-remote-learning-period-143195">engage with remote learning</a>. And families with a child with disability <a href="https://theconversation.com/im-scared-parents-of-children-with-disability-struggle-to-get-the-basics-during-coronavirus-139467">struggled</a> to secure the basics.</p>
<p>Advocates did <a href="https://credh.org.au/covid-19/">significant work</a> before governments started to consider people with disability in their COVID response plans. But this was often made more challenging because no data were collected about disability in the <a href="https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert/coronavirus-covid-19-current-situation-and-case-numbers">case numbers</a>, reflecting an <a href="https://www.sciencedirect.com/science/article/abs/pii/S1936657420300339">endemic problem</a> of lack of recognition of people with disability in the health system. </p>
<p>We’re seeing this again in the vaccine rollout, where <a href="https://www.health.gov.au/initiatives-and-programs/covid-19-vaccines/getting-vaccinated-for-covid-19#australias-vaccine-rollout">daily updates</a> on vaccination numbers group aged and disability care together, rather than <a href="https://www.abc.net.au/news/2021-04-12/disability-providers-wait-covid-19-vaccine/100061966">breaking these figures down</a> across the sectors.</p>
<p>Without this sort of data, we can’t effectively plan for people with disability.</p>
<p>Meanwhile, the <a href="https://www.health.gov.au/news/atagi-statement-on-astrazeneca-vaccine-in-response-to-new-vaccine-safety-concerns">government’s announcement</a> that the Pfizer vaccine is recommended for under 50s because of the <a href="https://theconversation.com/what-is-thrombocytopenia-the-rare-blood-condition-possibly-linked-to-the-astrazeneca-vaccine-158522">very rare but serious side effect</a> of low platelet count (thrombocytopenia) and blood clots (thrombosis) will see further pressure on Australia’s limited Pfizer supplies. </p>
<p>It may be some time before people with disability under 50 living in residential care are vaccinated. Yet the government continues to roll out Pfizer in residential aged care where AstraZeneca could be used, further demonstrating the low priority of the disability sector. </p>
<p>It appears little has been learned from the government’s earlier pandemic response (or lack thereof) concerning people with a disability. This group is being forgotten once again. </p>
<h2>Getting back on track</h2>
<p>In the Senate’s recent COVID-19 committee we heard confirmation aged-care residents had been prioritised over disability-care residents as they’re <a href="https://www.canberratimes.com.au/story/7217541/hunt-defends-disability-care-vaccine-rollout/">perceived to be at higher risk</a>. This has <a href="https://www.canberratimes.com.au/story/7219548/gobsmacked-anger-over-disability-care-vaccine-rollout/">angered many</a> in the disability community who were not told the phase 1a group would be broken into sub-groups. </p>
<p>The government has some way to go in mending its relationship with the disability community. In addition to bungling the vaccine rollout, at the moment there’s significant concern <a href="https://theconversation.com/dehumanising-and-a-nightmare-why-disability-groups-want-ndis-independent-assessments-scrapped-156941">over proposed reforms</a> to the NDIS. </p>
<p>What we need now is a clear plan to roll out vaccinations, not only to people with disability in residential care settings, but also those in the wider community and their support workers. The government needs to set a clear timeframe for vaccinating disability-care residents and staff — and stick to this.</p>
<p>The World Health Organization argues <a href="https://www.who.int/publications/i/item/WHO-2019-nCoV-vaccination-community-engagement-2021.1">community engagement</a> is key to a successful vaccination rollout. In this light, commonwealth and state governments need to do some substantial work to engage people with disability and the broader sector to turn this situation around.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/dehumanising-and-a-nightmare-why-disability-groups-want-ndis-independent-assessments-scrapped-156941">'Dehumanising' and 'a nightmare': why disability groups want NDIS independent assessments scrapped</a>
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<img src="https://counter.theconversation.com/content/159439/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Helen Dickinson receives funding from ARC, NHMRC, several federal and state governments and Children and Young People with Disabilities Australia. </span></em></p><p class="fine-print"><em><span>Anne Kavanagh receives funding from the NHMRC and the ARC. She has also received funding from the Victorian and Commonwealth governments and the NDIA. </span></em></p>During the height of the pandemic, people with disability felt they had been forgotten and were not a priority. In the vaccine rollout, the government is repeating its past mistakes.Helen Dickinson, Professor, Public Service Research, UNSW SydneyAnne Kavanagh, Professor of Disability and Health, Melbourne School of Population and Global Health, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1509182020-12-16T13:14:51Z2020-12-16T13:14:51ZCOVID-19 means a lot more work for families of children with disabilities, but schools can help<figure><img src="https://images.theconversation.com/files/374481/original/file-20201211-17-cgw51b.jpg?ixlib=rb-1.1.0&rect=5%2C10%2C3589%2C2387&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Mike Keller, a 13-year old boy with autism, uses a keyboard and iPad to communicate with his mother, Lori Mitchell-Keller.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/mike-keller-a-13-year-old-boy-with-autism-uses-a-keyboard-news-photo/646551868?adppopup=true">Sarah L. Voisin/The Washington Post via Getty Images</a></span></figcaption></figure><p>Children don’t come with how-to manuals. Even if they did, they would all require a manual of their own, tailored to their unique make and model. That’s why caregiving can be rewarding, as well as puzzling and demanding – particularly for family caregivers of children with disabilities. </p>
<p>Although these caregivers often report that the role gives them a sense of purpose, it usually comes with physical, emotional and financial strains. COVID-19 has added <a href="https://www.washingtonpost.com/local/education/special-education-students-are-not-just-falling-behind--theyre-losing-key-skills-parents-say/2020/08/05/ec1b91ca-cffd-11ea-9038-af089b63ac21_story.html">major hurdles</a> to accessing, delivering and evaluating special education services. </p>
<p>The U.S. House and Senate have both introduced <a href="https://schiff.house.gov/news/press-releases/rep-schiff-introduces-bill-to-support-children-with-disabilities-during-covid-19">COVID-19 relief bills</a> to provide schools more funding to <a href="https://www.murphy.senate.gov/newsroom/press-releases/murphy-hassan-van-hollen-introduce-legislation-to-increase-funding-for-children-with-disabilities">support students with disabilities</a>. But what remains overlooked is a focus on supporting their family caregivers.</p>
<p>According to a <a href="https://www.caregiving.org/wp-content/uploads/2020/06/AARP1316_RPT_CaregivingintheUS_WEB.pdf">2020 report</a> commissioned by the National Alliance for Caregiving and AARP, more than 14 million family caregivers in the U.S. provide unpaid care for children under 18. That’s an increase of over 4 million since 2015. These numbers don’t explain the unique and often challenging experiences of being a caregiver for a child with special needs. Additional caregiving demands can include extra appointments for evaluations and specialized therapies, and increased one-on-one support to accomplish everyday tasks. </p>
<p><a href="https://www.cdc.gov/ncbddd/developmentaldisabilities/features/increase-in-developmental-disabilities.html">One in 6 U.S. children</a> have been diagnosed with a developmental disability such as attention deficit hyperactivity, autism, intellectual disability or cerebral palsy. These children have a complex range of caregiving needs involving their health, daily living and education activities. </p>
<p>We are studying the experiences of family caregivers during COVID-19 through surveys and interviews with caregivers of children with and without disabilities nationwide. A resounding theme: All family caregivers are looking for respite.</p>
<p>But according to <a href="https://csch.uconn.edu/wp-content/uploads/sites/2206/2020/07/CSCH-Brief-COVID-19-Impact-on-Caregivers-July-2020.pdf">our findings</a>, caregivers of children with moderate to severe disabilities – like autism or attention deficit hyperactivity disorder (ADHD) – are facing significantly more stress, depression, anxiety and caregiver burden. These findings will be published in a forthcoming issue of “<a href="https://www.apa.org/pubs/journals/spq">School Psychology</a>.” </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/374899/original/file-20201214-23-1xyeehy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Girl holds handmade poster that reads: 'Remote learning does not work for students with autism'" src="https://images.theconversation.com/files/374899/original/file-20201214-23-1xyeehy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/374899/original/file-20201214-23-1xyeehy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=410&fit=crop&dpr=1 600w, https://images.theconversation.com/files/374899/original/file-20201214-23-1xyeehy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=410&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/374899/original/file-20201214-23-1xyeehy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=410&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/374899/original/file-20201214-23-1xyeehy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=515&fit=crop&dpr=1 754w, https://images.theconversation.com/files/374899/original/file-20201214-23-1xyeehy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=515&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/374899/original/file-20201214-23-1xyeehy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=515&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">Families with special needs students protested outside Boston Public Schools’ headquarters in September.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/families-of-special-needs-students-supporters-and-the-news-photo/1228455920?adppopup=true">Barry Chin/The Boston Globe via Getty Images</a></span>
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<p>As one parent of a child with moderate disabilities shared, “My child was already struggling with in-person school. Coming home and having to do everything kind of independently, even though they had lessons online and videos he could watch, made his stress level super-high, which then made my stress level super-high.” </p>
<p>These strains are concerning, given that research suggests <a href="https://doi.org/10.1177/0143034320971675">parental stress</a> can influence outcomes for children with disabilities. </p>
<p>Part of this stress comes from having to fill the roles of multiple professionals with specialized training. One participant with two children – one with autism and one with ADHD – described feeling “left, in a sense, to try and meet all of those professionals’ needs, including occupational therapists, physical therapists, speech therapists [and] school psychologists.” </p>
<p>Another shared: “It trickles down to me doing a lot of research – one more thing in my bucket that’s always already overflowing.” </p>
<p>Our findings also suggest that caregivers of children with disabilities struggled to engage in personal wellness before the pandemic, compared with caregivers of children without disabilities. That dynamic has only worsened amid COVID-19. </p>
<p>“I kind of put my needs last, waiting for things to kind of settle down,” a participant shared. “But I’ve had like one crisis after another, and then the pandemic hit.” </p>
<p>We believe that providing quality education services for children with disabilities begins with supporting family caregivers. Using their own words, we captured a few ideas about how schools can support family caregivers, especially during this time of increased caregiving burden.</p>
<h2>Hear their stories</h2>
<p>A key concern among caregivers is feeling alone. One participant found value in a support hotline staffed by social workers. Another stressed the need to step up empathy and encouragement for family caregivers: “Sometimes it’s just getting to the end of the day and just trying to make it through and have fun and try to not let it get to you.” </p>
<p>Schools can check in with families, <a href="https://doi.org/10.1177/1053451209353443">listening to ensure they are heard</a> and feel connected.</p>
<h2>Strengthen active collaboration</h2>
<p>Educators rely on families to deliver critical instruction and therapies for students with disabilities. This means family caregivers need to feel comfortable asking them for specific help. Some schools have been building strong <a href="https://www.brookings.edu/blog/education-plus-development/2020/10/21/can-new-forms-of-parent-engagement-be-an-education-game-changer-post-covid-19/">home-school partnerships</a> during the pandemic.</p>
<p>Educators can set up frequent meetings with family caregivers to review and adjust learning plans. They can also be thoughtful in sharing resources that families are expected to use. As one parent told us, “I think it would make more sense for the school to go through these things instead of just giving us a million things to download … I would have to talk to the special education teacher as far as what makes sense for my child, with more quality than quantity.” </p>
<h2>Support them in personal wellness</h2>
<p>Personal wellness is critical to being able to help others. But big changes to established routines can create more stress for family caregivers. “It probably would have benefited me to already be doing some things like mindfulness and meditating,” one participant stated. “Maybe it would be easier for me to do that now if it had already been part of a routine.” </p>
<p>[<em>Get the best of The Conversation, every weekend.</em> <a href="https://theconversation.com/us/newsletters/weekly-highlights-61?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=weeklybest">Sign up for our weekly newsletter</a>.]</p>
<p>Schools can support family caregivers by offering tips on how to take <a href="https://csch.uconn.edu/wp-content/uploads/sites/2206/2020/07/CSCH-Report-Responding-to-COVID-19-Simple-Strategies-7-6-20.pdf">small steps</a> that reinforce predictable routines, positive relationships and pleasurable engagement. A step may be as simple as taking two extra minutes in the shower to allow the brain to quiet.</p><img src="https://counter.theconversation.com/content/150918/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 organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Some parents of kids with disabilities are doubling as specialized teachers, occupational therapists, speech therapists and psychologists during the pandemic.Sandra M. Chafouleas, Professor of Educational Psychology, University of ConnecticutEmily A. Iovino, Postdoctoral research associate, University of ConnecticutLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1374782020-05-14T18:59:08Z2020-05-14T18:59:08ZCoronavirus crisis shows ableism shapes Canada’s long-term care for people with disabilities<figure><img src="https://images.theconversation.com/files/334502/original/file-20200512-82353-1wk8m7z.jpg?ixlib=rb-1.1.0&rect=91%2C37%2C3449%2C2295&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Staff members stand at a window as they watch a parade of well-wishers driving by Orchard Villa Care home, in Pickering, Ont., on April 25, 2020. </span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Chris Young</span></span></figcaption></figure><p>Nationwide, long-term care facilities, primarily occupied by residents who are elderly or live with disabilities, are in deteriorating condition. But little has been done to actually address the organizational decisions that lead to these dangerous conditions. COVID-19 has exposed many inequities within Canada’s care systems. </p>
<p>When we look at who is disproportionately affected by this pandemic, we can’t help but <a href="http://www.ohrc.on.ca/en/policy-ableism-and-discrimination-based-disability">ask how ableism shapes notions of whose lives are valued and whose are not</a>. As governments plan for a “return to normal” while serious systemic issues remain in long-term living facilities, is normal really what we want to return to? </p>
<p>Localized, facility-based outbreaks of the coronavirus have led to high numbers of residents and staff contracting COVID-19. More than 40 per cent of the residents of Pinecrest Nursing Home in Bobcaygeon, Ont., <a href="https://nationalpost.com/news/canada/covid-19-coronavirus-pinecrest-nursing-home-bobcaygeon">have lost their lives to COVID-19</a>. Similar patterns have surfaced <a href="https://globalnews.ca/news/6800965/bc-coronavirus-update-april-9/">in British Columbia</a>, other communities in <a href="https://ottawacitizen.com/news/ottawa-long-term-care-homes-bracing-after-outbreaks-in-almonte-carleton-place/">Ontario</a>, <a href="https://calgaryherald.com/news/local-news/live-at-330-p-m-dr-hinshaw-to-update-covid-19-response/">Alberta</a>, <a href="https://montreal.ctvnews.ca/quebec-takes-charge-of-seniors-home-after-reports-of-death-unhygienic-conditions-1.4891741">Québec</a> <a href="https://globalnews.ca/news/6807585/coronavirus-dorval-residence/">(most severely)</a> and <a href="https://www.cbc.ca/news/canada/nova-scotia/covid-19-update-nova-scotia-1.5545512">Nova Scotia</a>. </p>
<p>This is also true in facilities dedicated to people with disabilities. A Markham, Ont., facility reported that <a href="https://www.thestar.com/news/gta/2020/04/28/fifth-covid-19-resident-death-at-participation-house-in-markham.html">40 of 42 residents and 38 health-care workers tested positive for COVID-19</a> towards the end of April.</p>
<p>According to the <em>Toronto Star</em>, deaths of residents in long-term care facilities <a href="https://www.thestar.com/politics/federal/2020/05/07/82-of-canadas-covid-19-deaths-have-been-in-long-term-care.html">made up 82 per cent of the country’s total number of fatalities due to COVID-19</a> as of May 7, 2020. Despite the continuing threat of COVID-19 to residents in care facilities and warnings of a resurgence, many jurisdictions are now making plans to lighten travel and social restrictions.</p>
<h2>Long-term care, long-term problems</h2>
<p>Even before the pandemic, long-term care facilities had disturbing incidences of abuse, <a href="https://www.cbc.ca/news/business/elderly-care-violence-marketplace-investigates-1.4493215">neglect</a> and <a href="https://www.cbc.ca/news/canada/london/woodstock-ontario-elizabeth-wettlaufer-public-inquiry-report-1.5230181">even murder</a>. Yet the conditions that allow such atrocities to occur continue.</p>
<p>Long-term care facilities often experience <a href="https://www.unifor.org/sites/default/files/documents/document/final_psw_report.pdf">severe deficits in funding and staff.</a> Typically, there is far greater demand for beds than <a href="https://publications.virtualpaper.com/uploads/9b5ad0be6edd4b1d143d2ce54855c485/da758e87f7c273e9e3a4c31cd776beb2/pdf/annual_report_2019.pdf">there are beds available</a>, leaving no opportunity for choice of facility. </p>
<p>For many Canadians, the choice to move into residential care is not really a choice at all. There are limited options for many people who require around-the-clock care. Independent living centres are not broadly available and <a href="https://www.cbc.ca/news/canada/windsor/supportive-housing-delays-continue-1.5241574">many have extensive waiting lists</a>. Self-directed care options may be available, however, <a href="https://www.dfontario.ca/info/general-faqs.html">there are limitations for those who require full-time support</a>.</p>
<p>These services are also vulnerable to staffing shortages, lack of training and funding cuts. While personal support workers (PSWs) provide a critical service and support many personal care activities for daily living, their work is often undervalued. Many are overworked, underpaid and precariously employed. </p>
<p>In addition, care work is often fulfilled through the labour of poor, racialized and/or immigrant women who may face additional barriers in drawing attention to <a href="https://local4948.org/images/bibliography/articles/WorkingWomenMarch2014.pdf">exploitative working conditions</a>. During the pandemic, it has been revealed that PSWs are <a href="https://www.cbc.ca/news/canada/toronto/participation-house-critical-need-ppe-staff-1.5529384">not always provided with adequate personal protective equipment to keep themselves or the residents safe</a>. </p>
<p>But none of this is new or, at least, unexpected. For generations, the dangers that arise when we organize populations into institutional settings <a href="https://www.palgrave.com/gp/book/9781137393234">have been abundantly clear</a>. COVID-19 may have shone a spotlight on these issues, but the inequities were always there. </p>
<h2>An indifference towards people with disabilities</h2>
<p>At a March 23 news conference, Dr. Deborah Birx, the White House coronavirus response co-ordinator, spoke on the global mortality rates of COVID-19. She assured the public that the majority of people who do and will perish from the virus are largely elderly and those with pre-existing conditions. </p>
<blockquote>
<p>“Still 99 per cent of all the mortality coming out of Europe, in general, is over 50 and pre-existing conditions. The pre-existing condition piece still holds in Italy with the majority of the mortality having three or more pre-existing conditions. <a href="https://youtu.be/p4OKsUNRMzY?t=1401">I think this is reassuring to all of us, but it doesn’t change the need to continue to protect the elderly…</a>.”</p>
</blockquote>
<p>Birx’s statement echoes a dangerous discourse that <a href="https://www.thinkupstream.net/stop_dehumanizing/">people with disabilities as well as disability activists and allies have been challenging for some time</a> — an insidious indifference towards the lives of persons who are disabled or elderly. </p>
<p>To whom would this be reassuring? This casual and callous indifference has come further into focus as jurisdictions weigh the economic implications of returning to normal despite the continued, and possibly heightened, risk for persons in residential care. </p>
<p>Nirmala Erevelles, a critical disability studies scholar, explores the role capitalism and capitalist principles <a href="https://www.palgrave.com/gp/book/9780230100183">play in producing bodies that matter and bodies that do not</a>. Ableism is keenly expressed by attempting to justify human value through the lens of economic productivity and perceived expense. As disability justice activist Mia Mingus writes: “Ableism is connected to all of our struggles because <a href="https://leavingevidence.wordpress.com/2011/02/12/changing-the-framework-disability-justice/">it undergirds notions of whose bodies are considered valuable, desirable and disposable</a>.” </p>
<p>This crisis exposes how ableism has long shaped how we think about care and those who receive care. Ableism shapes how we organize long-term care funding, staffing and crisis management as well as day-to-day care. </p>
<p>As governments and organizations re-imagine how care can be more effectively delivered, there are lessons to be learned from people who have navigated care and service systems <a href="http://www.jeffpreston.ca/2020/05/05/opening-remarks-to-huma-committee/?fbclid=IwAR0hHeFJxTOi_GvaFGfRXzKs3BgzT5I56moMNAqTLLgxttjHcSF4oUl7tBQ">before the global crisis began</a>. People with disabilities and those who have experienced life in long-term care need to be at the forefront, leading and advising on systemic change.</p><img src="https://counter.theconversation.com/content/137478/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Gillian Parekh receives funding from the Social Science and Humanities Research Council. </span></em></p><p class="fine-print"><em><span>Kathryn Underwood receives funding from the Social Sciences and Humanities Research Council. </span></em></p>As governments start to return to a new normal, people with disabilities in care facilities are still in serious danger of being left behind during the coronavirus pandemic.Gillian Parekh, Canada Research Chair (Tier 2) in Inclusion, Disability and Education, York University, CanadaKathryn Underwood, Professor, Early Childhood Studies, Toronto Metropolitan 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>
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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>
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<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>
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<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>
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<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">
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<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>
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<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/1178352019-05-29T19:44:37Z2019-05-29T19:44:37ZHere’s what needs to happen to get the NDIS back on track<figure><img src="https://images.theconversation.com/files/276947/original/file-20190529-192339-pnctkg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">More than 277,000 people have already benefited from the NDIS, but there's room to improve.</span> <span class="attribution"><span class="source">From shutterstock.com</span></span></figcaption></figure><p>In one of his first official public remarks since being re-elected, Prime Minister Scott Morrison pledged that <a href="https://probonoaustralia.com.au/news/2019/05/morrison-vows-to-prioritise-ndis-following-election-win/">addressing failures in the national disability insurance scheme</a> (NDIS) would be a priority for the new government. </p>
<p>Stuart Robert has assumed the role of minister for the NDIS and will be charged with delivering on this important agenda. </p>
<p>So what does the new minister need to do to get the NDIS back on track?</p>
<p>There is much that the NDIS has done well. Just over <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports?utm_source=National+Disability+Insurance+Scheme+eNewsletter&utm_campaign=500f4110c7-EMAIL_CAMPAIGN_2017_01_20_COPY_01&utm_medium=email&utm_term=0_85b9cee0c8-500f4110c7-50599529">277,000</a> people have already accessed the scheme and this is set to rise to 460,000 at full roll-out in 2020. </p>
<p>Some scheme participants <a href="https://socialequity.unimelb.edu.au/__data/assets/pdf_file/0008/2598497/Choice-Control-and-the-NDIS.pdf">report</a> greater choice over support workers, access to new services and technologies,
and <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports?utm_source=National+Disability+Insurance+Scheme+eNewsletter&utm_campaign=500f4110c7-EMAIL_CAMPAIGN_2017_01_20_COPY_01&utm_medium=email&utm_term=0_85b9cee0c8-500f4110c7-50599529">generally strong satisfaction rates</a>. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-how-much-does-the-ndis-cost-and-where-does-this-money-come-from-95924">Explainer: how much does the NDIS cost and where does this money come from?</a>
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<p>Alongside these positives are a number of concerns about the scheme and areas that need improvement.</p>
<p>The development of the NDIS is a massive undertaking; such schemes take <a href="https://theconversation.com/ndis-hiccups-are-expected-as-with-any-large-scale-social-reform-75693">time to get right</a> and inevitably face a number of teething issues. But in recent months, the number of challenges has grown and the calls for change have become louder. </p>
<p>Every Australian Counts, the grassroots disability advocacy group that campaigned for the introduction of the NDIS <a href="https://www.everyaustraliancounts.com.au/media-release-every-australian-counts-welcomes-new-ministers-to-ndis-and-social-services-portfolios/">recently released a statement arguing</a>:</p>
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<p>The problems with the NDIS must be fixed so people can finally get the support they desperately need. Too many people are falling through the cracks and not getting essential help. The scheme is not working the way it was intended to. </p>
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<h2>Long waits for services</h2>
<p>Many of the problems with the scheme relate to the time people have to wait – either to receive a plan, to activate it, or to have it reviewed.</p>
<p>In 2018, the Commonwealth Ombudsman investigated the NDIS’s handling of reviews on the basis that <a href="http://www.ombudsman.gov.au/__data/assets/pdf_file/0029/83981/NDIS-NDIA-Final-report-on-administration-of-reviews-under-the-Act.pdf">around one-third of all complaints</a> it received about the scheme related to this issue. </p>
<p>This system was judged “unapproachable” and “lacking in fairness and transparency” and leading to delays of <a href="https://www.abc.net.au/news/2018-05-16/ndis-reviews-causing-delays-of-up-to-nine-months/9764536">up to nine months</a> to receive an outcome.</p>
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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>
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<p>The Coalition addressed some of these issues in its election promises around the NDIS. </p>
<p>It committed to introducing an <a href="https://www.liberal.org.au/our-plan-support-people-disability">NDIS Participant Service Guarantee</a>. This would set timeframes for participants to receive an access decision, and have their plan approved or reviewed. </p>
<p>This, the Coalition promised, should reduce the time taken for people with disability to access the NDIS and have their plan approved and implemented. </p>
<p>There is also a commitment to introduce a single point of contact for the NDIS and to allow those with a “stable” disability to opt into a three-year plan, rather than being reviewed every 12 months.</p>
<p>These developments have been welcomed by those who have experienced significant delays in having plans approved, executed or reviewed – delays that often lead to <a href="https://www.weeklytimesnow.com.au/news/regional/boy-uses-wheelbarrow-while-waiting-for-ndis-wheelchair/news-story/99e7e4a09ba2892cb3f920b79ea22687">significant personal and family costs</a>. </p>
<p>Yet the minister will face a challenge in terms of how to deliver on these promises. </p>
<h2>Staff shortages</h2>
<p>The National Disability Insurance Agency (NDIA) is the independent statutory agency charged with implementing the NDIS. One of the challenges it has faced is limited staff to drive these changes. </p>
<p>In 2014, a staffing cap was placed on the NDIA, restricting the numbers employed to <a href="https://www.theguardian.com/australia-news/2018/aug/08/labor-pledges-to-scrap-ndis-staff-cap-over-outsourcing-concerns">3,000</a>. Although the government has committed to increasing the cap gradually to <a href="https://probonoaustralia.com.au/news/2018/08/government-set-increase-ndia-staff-cap/">3,400</a> in 2020-21, it will be a challenge to deliver on this bold agenda with a limited workforce. </p>
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Read more:
<a href="https://theconversation.com/why-more-investment-in-the-ndis-may-not-boost-employment-100177">Why more investment in the NDIS may not boost employment</a>
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<p>The Productivity Commission has <a href="https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs-overview.pdf">previously criticised</a> the pace of the roll-out of the scheme, arguing it is taking place too quickly for the volume of resources available to the NDIA.</p>
<p>The NDIA received significant criticism for spending over <a href="https://www.theaustralian.com.au/nation/health/ndis-racks-up-600m-on-consultants-and-outsourced-staff/news-story/076d95ff8ce075318b3a282a56248601">A$600 million</a> in 2017-18 on consultants, contractors and outsourced staff. </p>
<p>Continuing to spend significant amounts of money on consultants may put pressure on future NDIS budgets.</p>
<p>But it will be challenging for the minister to avoid using consultants and outsourced staff to help fill this workforce gap. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/276949/original/file-20190529-192372-17sm28n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/276949/original/file-20190529-192372-17sm28n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/276949/original/file-20190529-192372-17sm28n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/276949/original/file-20190529-192372-17sm28n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/276949/original/file-20190529-192372-17sm28n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/276949/original/file-20190529-192372-17sm28n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/276949/original/file-20190529-192372-17sm28n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">People with many different disabilities may be eligible to receive support through the NDIS.</span>
<span class="attribution"><span class="source">From shutterstock.com</span></span>
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<h2>Under-spending and tightening eligibility</h2>
<p>It was <a href="https://www.abc.net.au/news/2019-04-03/federal-budget-surplus-reflects-risky-fiscal-forecasts/10966166">widely reported</a> that the surplus seen in the last federal budget was boosted by a A$1.6 billion dollar underspend on the NDIS. </p>
<p>Some disability advocates argued this underspend only occurred due to the delays in people getting on to the schemes and issues in relation to the supply of services in a rapidly developing market. </p>
<p>Disability advocates have also noted some of these savings might have been the result of tightening criteria for accessing services. This might mean individuals who were once eligible for the NDIS find that they no longer are. This has been a particular issue in relation to autism spectrum disorders. Or, when plans are reviewed, they are reduced or gradually trimmed back, often with little clear rationale for why this has happened. </p>
<p>Labor had made the <a href="https://www.smh.com.au/federal-election-2019/labor-unveils-plan-to-fix-the-national-disability-insurance-scheme-20190502-p51jjy.html">election promise</a> of putting any NDIS underspend into a “locked box” to be managed by the Future Fund and ensure it would be used to guarantee the NDIS would be fully funded into the future. </p>
<p>The Coalition has committed to ensuring that all those who are eligible will continue to receive a fully funded plan and necessary supports to achieve their goals. </p>
<p>The minister has some significant work ahead to ensure the budget for the NDIS continues to be sufficient to do this and to ensure that criteria are not unnecessarily adjusted.</p>
<h2>Accommodating diversity</h2>
<p>Alongside these broad issues, the NDIS continues to face challenges in accommodating diversity. While the rates of disability are higher in Aboriginal and Torres Strait Islander populations (<a href="https://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4430.0Main%20Features802015?opendocument&tabname=Summary&prodno=4430.0&issue=2015&num=&view=">almost 25%</a>), just <a href="https://www.ndis.gov.au/about-us/publications/quarterly-reports?utm_source=National+Disability+Insurance+Scheme+eNewsletter&utm_campaign=500f4110c7-EMAIL_CAMPAIGN_2017_01_20_COPY_01&utm_medium=email&utm_term=0_85b9cee0c8-500f4110c7-50599529">5% of NDIS participants</a> are of this heritage. </p>
<p>Aboriginal and Torres Strait Islander people with disabilities are <a href="https://theconversation.com/why-aboriginal-voices-need-to-be-front-and-centre-in-the-disability-royal-commission-115056">not well-engaged</a> with the NDIS and we see <a href="https://www.sbs.com.au/news/fears-non-english-speakers-are-being-left-behind-in-ndis">similar challenges</a> across culturally and linguistically diverse populations more broadly.</p>
<p>The NDIA has recently introduced strategies to address these issues, although there is some distance to go until a cultural competency framework is well-embedded. The development of <a href="https://probonoaustralia.com.au/news/2019/02/culturally-diverse-people-disability-struggling-engage-ndis/">different entry paths</a> into the NDIS is one way to assist this process, with community workers helping to explain and navigate the system for these audiences. </p>
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Read more:
<a href="https://theconversation.com/indigenous-people-with-disability-have-a-double-disadvantage-and-the-ndis-cant-handle-that-102648">Indigenous people with disability have a double disadvantage and the NDIS can't handle that</a>
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<img src="https://counter.theconversation.com/content/117835/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 affiliated with the Consumer Policy Research Centre.</span></em></p>The government now has a dedicated NDIS minister. Here are the four key areas of the scheme that need attention.Helen Dickinson, Professor, Public Service Research, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1119992019-02-21T19:06:16Z2019-02-21T19:06:16ZPeople with disability are more likely to be victims of crime – here’s why<figure><img src="https://images.theconversation.com/files/260111/original/file-20190221-120338-1gy4r4k.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">It's not just about carer stress or socioeconomic disadvantage. </span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/silhouette-portrait-adult-son-senior-father-1105094054">Halfpoint/Shutterstock</a></span></figcaption></figure><p>The Morrison government has finally <a href="https://www.theguardian.com/australia-news/2019/feb/18/coalition-backs-disability-royal-commission-but-doesnt-give-green-light">agreed to a royal commission</a> into the abuse of people living with disability – if the states get on board. </p>
<p>After hearing horrific tales of abuse and neglect in the media this week, it’s easy to understand why the government waved the motion through parliament: some of our most vulnerable citizens have been beaten, raped, and even killed at the hands of those supposedly caring for them. </p>
<p>The statistics are alarming. Up to <a href="http://wwda.org.au/wp-content/uploads/2013/12/ACDA_Sub_Sen_Inquiry_Violence_Institutions.pdf">90% of women with disability</a> have been sexually assaulted. And people with disability are <a href="https://www.nursingtimes.net/roles/learning-disability-nurses/premature-death-in-people-with-learning-disabilities/5077562.article">three times as likely</a> to die prematurely than the general population from causes that could have been prevented with better quality care. </p>
<p>But to provide victims with justice, we need to better understand why people with disabilities are more vulnerable to abuse and assault. </p>
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<strong>
Read more:
<a href="https://theconversation.com/why-schools-desperately-need-a-royal-commission-into-the-abuse-of-disabled-people-112058">Why schools desperately need a royal commission into the abuse of disabled people</a>
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<h2>There’s no one reason</h2>
<p>There are lots of theories as to why people with disabilities are at increased risk of victimisation. </p>
<p>Some scholars suggest it’s because people with disability <a href="https://pdfs.semanticscholar.org/f454/efe54a7a0ce9ab9f65a6a0c5184503eb7f0d.pdf">are more likely to be economically disadvantaged, making them more vulnerable to crimes</a>. They say it’s social disadvantage and not disability <em>per se</em> that leads to higher rates of assault. </p>
<p>But this doesn’t explain high rates of abuse even when people with disability are well-resourced, or who live in privileged areas. </p>
<p>Then there is the dependency-stress theory. This suggests that because people with disability often need carers, their carers get stressed and sometimes act aggressively in response to demands. </p>
<p>This doesn’t stack up well either. It seems to blame the victim – “if only you didn’t need so much”. And attributing abuse of people with disability to carer stress probably wouldn’t be helpful in reducing rates of assault. </p>
<p>They may also be unintended consequences of attributing abuse to dependency and stress. Stressed carers may be unwilling to seek support if they think people will suspect they may abuse the person they care for, and this could in turn <a href="https://onlinelibrary.wiley.com/doi/epdf/10.1111/j.1365-2648.2006.03931.x">drive abusive behaviour underground</a>. </p>
<p>More compelling is the idea that increased risk of victimisation is a combination of factors in the environment (such as chaotic, poorly run residential care homes), the motives of the offender (such as sexual gratification), and characteristics of the victim (the person may depend on the offender for help with daily living, such as bathing). </p>
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Read more:
<a href="https://theconversation.com/we-count-what-matters-and-violence-against-people-with-disability-matters-51320">We count what matters, and violence against people with disability matters</a>
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<p>There are also <a href="https://www.researchgate.net/publication/14337011_Risk_Factors_for_Youth_Victimization_Beyond_a_LifestylesRoutine_Activities_Theory_Approach">aspects of victims with a disability</a> that make them more appealing to a potential offender. A disabled person with communication difficulties, for example, may require help with dressing and may have trouble reporting the offence. This provides an opportunity to offend with a low risk of detection. </p>
<p>One strength of these types of multi-factor explanations is the recognition of the complexity of victimisation, which is <a href="https://www.researchgate.net/publication/258854897_Violence_against_people_with_disabilities_A_conceptual_analysis">unlikely to be the product</a> of a single cause. </p>
<h2>Some crimes are seen as less serious</h2>
<p>Explanations of offending against people with disabilities must include the social context. As Australian Disability Discrimination Commissioner Alastair McEwin argues, as a society we often view <a href="https://www.humanrights.gov.au/news/speeches/equal-law-how-criminal-justice-system-failing-people-disability">crimes against people with disabilities as less serious</a>. </p>
<p>We see evidence of this type of disempowerment in the criminal justice system. If people with disability are <a href="https://doi.org/10.1016/0191-8869(95)00070-M">seen as less competent as witnesses</a>, or can’t access support to navigate the distressing nature of the court system, this creates barriers to the prosecution of offenders, and perpetuates abuse cultures. </p>
<p>In fact, crimes tend to have to be very serious to be <a href="http://dx.doi.org/10.1111/j.1468-3148.2006.00291.x">reported to police at all</a>. In <a href="https://www.ncbi.nlm.nih.gov/pubmed/28289783">our research</a>, we found reports of sexual assault were more than six times more likely for people with intellectual disability, compared with people without a disability. </p>
<p>But when looking at reports of theft, this was far less likely to be recorded by police when the victim has an intellectual disability.</p>
<p>People with intellectual disability aren’t less likely to be victims of theft. <a href="http://dx.doi.org/10.1080/00050069208257591">Research shows</a> that when you ask people with disability about their experiences, theft is quite common. Rather, it seem these types of offences don’t necessarily meet a “threshold” for reporting to police. </p>
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Read more:
<a href="https://theconversation.com/abuse-and-neglect-of-people-with-disabilities-demands-zero-tolerance-response-43999">Abuse and neglect of people with disabilities demands zero-tolerance response</a>
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<p>Still, even violent crime and rape still go <a href="https://www.ncbi.nlm.nih.gov/pubmed/17803493">unreported</a> in official records, often because of fear of a loss of services for the person. This is especially true if the service where the assault happened is the only local option, or the perpetrator is a family member. </p>
<p>A person with disability, able and given the opportunity to self-report, may be discouraged by fear of losing their home, being placed in a more restrictive or unfamiliar setting, fear of reprisal, or even out of affection for the offender.</p>
<h2>Time for justice</h2>
<p>We need to provide opportunities for people with disabilities to report victimisation, and empower them to access justice. A royal commission is a good place to start.</p>
<p>We also need to provide stable housing, support and personal care that is not reliant on a single service, or a single carer. This would mean viable alternatives are available for people with disabilities who may find themselves in dangerous or abusive circumstances. </p>
<p>Fundamentally, we need to shift community attitudes, starting with service delivery, police, health professionals and the legal profession. When society holds attitudes that people with disability are lesser, this creates obstacles to accurately accounting for, and holding to account, the instances of abuse and assault we know are all too common.</p><img src="https://counter.theconversation.com/content/111999/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Margaret Nixon does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>People with disability face a number of barriers to justice, not least that crimes against them are often seen as less serious. This needs to stop.Margaret Nixon, Lecturer, Centre for Forensic Behavioural Science, Swinburne University of TechnologyLicensed as Creative Commons – attribution, no derivatives.