tag:theconversation.com,2011:/ca/topics/ndis-rollout-19828/articlesNDIS rollout – The Conversation2018-06-11T20:36:57Ztag:theconversation.com,2011:article/978512018-06-11T20:36:57Z2018-06-11T20:36:57ZFive years on, NDIS is getting young people out of aged care, but all too slowly<figure><img src="https://images.theconversation.com/files/222090/original/file-20180607-137306-1u9bq7o.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4462%2C2416&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Through the NDIS, Kirby Littlely has been able to leave the nursing home where she stayed after a series of strokes.</span> <span class="attribution"><span class="source">NDIS/Summer Foundation</span></span></figcaption></figure><p>In July this year, the <a href="https://www.ndis.gov.au/about-us/what-ndis.html">National Disability Insurance Scheme</a> marks its fifth anniversary since <a href="https://www.ndis.gov.au/about-us/our-sites">starting at four trial sites</a>. The latest Summer Foundation <a href="https://www.summerfoundation.org.au/resources/ndis-report-card-june-2018/">NDIS Report Card</a> shows a 5% reduction in the number of young people entering aged care.</p>
<p>While this is a step in the right direction, it is a disappointingly small one. The number of young people living in aged care has remained just above 6,000 for the past 10 years. A 5% reduction in admissions in the past five years is barely scratching the surface of the total numbers still living in aged care.</p>
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Read more:
<a href="https://theconversation.com/nursing-homes-are-no-place-for-young-people-with-disabilities-43847">Nursing homes are no place for young people with disabilities</a>
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<p>One explanation for the stubbornly high number of young people in residential aged care is that over half of the 2,000 people who have an NDIS plan are relatively new to the scheme, having entered between September 2017 and March 2018. This was a result of the “<a href="https://www.summerfoundation.org.au/wp-content/uploads/2017/12/cfc-newsletter-dec2017-web.pdf">facilitated access</a>” program, a concerted effort by the NDIS to link young people in aged care to the scheme. Dedicated NDIS staff are charged with signing up young people with disabilities living in nursing homes.</p>
<p>Through this program 1,109 young people in aged care have become NDIS participants. That’s 31% more than the 849 young people in aged care who joined between 2013 and 2017. The NDIS deserves credit for this marked turnaround.</p>
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<a href="https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=195&fit=crop&dpr=1 600w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=195&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=195&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=246&fit=crop&dpr=1 754w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=246&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/222083/original/file-20180607-137285-1ibfsb1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=246&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">The numbers of young people in residential aged care (YPIRAC) who are signing up to the NDIS have picked up since September 2017, but are still below target.</span>
<span class="attribution"><a class="source" href="https://www.summerfoundation.org.au/resources/ndis-report-card-june-2018/">NDIS Report Card June 2018, Summer Foundation</a>, <span class="license">Author provided</span></span>
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<h2>So why is progress so slow?</h2>
<p>Finding young people living in aged care and linking them to the NDIS is a vital first step to creating positive and real change in their lives. However, a lot more work needs to be done to ensure that the person‘s NDIS plan is adequate and that they have the capacity and the necessary housing and supports in place to exit residential aged care. A closer look at the detail of the plans allocated to younger people with disabilities in residential aged care suggests inadequate plans may be part of the problem.</p>
<p><a href="https://www.aph.gov.au/Parliamentary_Business/Senate_Estimates/ca">Senate estimates data</a> (QON 185) show that the median plan value for young people in aged care is $104,563. This may help improve their quality of life, but when we break down this value we see that $77,539 could be taken up covering aged care costs alone. That leaves only $31,990 for assessments, support, home modifications and other essential supports needed to move out of residential aged care.</p>
<p>A significant factor forcing young people with high physical support into residential aged care is the lack of suitable, accessible and affordable housing. <a href="https://www.aph.gov.au/Parliamentary_Business/Senate_Estimates/ca">Senate estimates</a> (QON 194) revealed that only 23 or 1.5% of NDIS participants living in residential aged care have funding for housing in their plans. Many may be unable to leave because they have nowhere else to live.</p>
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Read more:
<a href="https://theconversation.com/ndis-needs-the-market-to-help-make-up-at-least-60-shortfall-in-specialist-disability-housing-93479">NDIS needs the market to help make up at least 60% shortfall in specialist disability housing</a>
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<p>The <a href="https://www.summerfoundation.org.au/resources/ndis-report-card-june-2018/">report card</a> also shows that NDIS participants living in aged care have difficulty implementing their plans. The data revealed that only 51.3% of these participants were drawing on the funding in their plans. So almost half have funding they are not using. </p>
<p>This may reflect the lack of appropriately skilled support co-ordinators to help with plan implementation, workforce shortages and inadequate housing options. It may also be a result of institutionalisation, where a person loses the capacity to see a future for themselves living in the community.</p>
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<figcaption><span class="caption">There are still more than 6,000 young people living in aged care facilities because of a lack of affordable and appropriate housing.</span></figcaption>
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<h2>What more needs to be done?</h2>
<p>Overall, the NDIS has shown that a focused effort to connect people with the scheme is required and will yield results. Much more work, however, is needed to ensure NDIS plans are appropriately designed to support people to live in the community.</p>
<p>Moving out of residential aged care can be a complex and intensive process. While the NDIS has a very important role, so do the health system and other parts of government and society.</p>
<p>If we are to resolve the issues of young people in nursing homes, we need to recognise that access to the NDIS is only part of the solution. Critical enablers are:</p>
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<li>an effective plan that includes adequate support for implementation</li>
<li>community housing and social infrastructure that are accessible and inclusive of the needs of people with disabilities who have complex needs </li>
<li>a much larger and flexible workforce with the necessary attitudes and skills to work effectively with people who have high support needs </li>
<li>information and support to build the capacity of individuals to live in the community</li>
<li>hospital staff who are resourced to co-ordinate community supports to enable smooth patient discharge that avoids entry into residential aged care</li>
<li>community health services with the capacity to meet complex health-care needs including high-quality preventive health care and slow-stream rehabilitation.</li>
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Read more:
<a href="https://theconversation.com/how-the-ndis-is-using-the-market-to-create-housing-for-people-with-disability-83144">How the NDIS is using the market to create housing for people with disability</a>
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<p class="fine-print"><em><span>George Taleporos is the Policy Manager at the Summer Foundation Ltd.</span></em></p>The NDIS has started to reduce the admissions of young people with disabilities to aged care facilities, but more than 6,000 are still waiting for more suitable accommodation.George Taleporos, Adjunct Senior Research Fellow, Living with Disability Research Centre, La Trobe UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/575722016-07-07T20:04:57Z2016-07-07T20:04:57ZUnderstanding the NDIS: the scheme does not yet address all the needs of Indigenous people with disabilities<figure><img src="https://images.theconversation.com/files/126472/original/image-20160614-29241-w5dkaf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The individual centred NDIS model can help service providers ensure their dealings with Indigenous Australians are culturally appropriate.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/bee/2215146239/in/photolist-4nKcNx-6qKABF-6qPzPu-4nPiY1-bpoMTY-v2VWrv-4coLqk-f9PqQ-eSStuQ-9TZB7S-fjkPgZ-5wTXcR-8ybwQJ-5wTMiF-dDbK5y-btCNNA-6qKHYa-eSEYxV-5b1hQa-eSw86P-9aiwnM-rbRamg-5K2p6D-6kqgBz-5wYao9-faz1VY-fK4yu5-5wYkHs-fayWuQ-5wYaC1-ckaddq-tjvS9-9e8hcg-fjkQSe-NPRTA-ckafdW-eaKsa5-dAm68z-p8vraK-4i2c9y-8gAa-8hrU4A-5wTXKi-5CJVey-bP47Ui-4vaApc-MzMjw-e3bDtn-e3hm6d-5xyzeA">Barbara Dieu/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p><em>On July 1 2016, the National Disability Insurance Scheme (NDIS) moved from a trial phase to a full national roll-out. In this series on <a href="https://theconversation.com/au/topics/understanding-the-ndis">Understanding the NDIS</a>, we explore how the scheme works, why Australia needs it, and the issues to be addressed before eligible Australians can receive the benefits they are entitled to.</em></p>
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<p>The <a href="http://www.ndis.gov.au/">National Disability Insurance Scheme</a> (NDIS) allows Australians with a disability to choose which agencies or people they wish to collaborate with to help achieve their goals. </p>
<p>For Indigenous people, there are many positives to this scheme. It provides the opportunity to address the identified <a href="http://www.pc.gov.au/inquiries/completed/disability-support/report">shortfalls</a> of the former institutionalised service system, some of which uniquely impact Indigenous people. </p>
<p>For instance, if an NDIS participant is not satisfied with a support worker or an agency, they can recruit a different person or withdraw their funding and transfer to another agency. This will enable Indigenous people to access those supports that are culturally appropriate for them and their needs.</p>
<p>The growing Indigenous disability rights movement has fostered more involvement in the planning and development of the NDIS. But there is still a need to acknowledge those who feel their voices are not being heard by the government. </p>
<p>I have previously <a href="https://croakey.org/calling-for-the-ndis-to-be-more-accountable-to-aboriginal-and-torres-strait-islander-people/">expressed my frustration</a> with the National Disability Insurance Agency (NDIA) – the agency responsible for overseeing the NDIS – for its lack of transparency on the NDIS rollout, with limited evidence that it is meeting the needs of Indigenous people.</p>
<h2>Unrepresentative participation</h2>
<p>As of March 2016, nearly 30,000 people with disabilities <a href="http://www.ndis.gov.au/sites/default/files/documents/Quarterly-Reports/11-report-coag.pdf">were participating</a> in NDIS trial sites, around 5% of them Indigenous. The latest National Aboriginal and Torres Strait Islander Social Survey reported that <a href="http://www.abs.gov.au/ausstats/abs@.nsf/mf/4714.0">45% of Indigenous Australians</a> aged 15 years and over said they had experienced a disability, and nearly 8% needed assistance with core activities (such as self-care or mobility) some or all of the time. </p>
<p>Added to this is the high rate of chronic health conditions that lead to physical impairments and disability, such as renal disease, middle ear diseases and glaucoma; as well as issues of <a href="http://www.ncbi.nlm.nih.gov/pubmed/27286466">low cognitive ability</a> among many Indigenous children. </p>
<p>While adequately estimating the NDIS eligibility rate in the Indigenous population is problematic, the 5% does not seem to be <a href="http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=10737418952">representative</a> of the rates of disability in Indigenous communities. </p>
<p>While the reasons for a lack of participation are many and complex, the underlying problem is access. A 2008 <a href="http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=10737418952">report showed</a> that nearly half of Indigenous people with severe core activity limitations identified problems in accessing generic and specialist services. </p>
<p>As my <a href="http://healthbulletin.org.au/articles/twelve-factors-that-can-influence-the-participation-of-aboriginal-people-in-disability/">research has shown</a>, the factors that impact on Indigenous people’s access to disability specific services are not just geographical. They also include the ways in which disability is conceptualised in Indigenous communities as well as lack of trust for mainstream services and lack of community connections. </p>
<p>Many Indigenous people <a href="http://ses.library.usyd.edu.au/handle/2123/14210">don’t engage with</a> disability support programs because of the stigma associated with the mainstream definition of disability adopted by government and non-government agencies. </p>
<p>My <a href="https://search.informit.com.au/documentSummary;dn=201000211;res=IELAPA">research has also highlighted</a> the fact that Indigenous people often focus on a person’s strengths, which is contrary to the clinical deficit model of disability adopted by the current service system. </p>
<h2>Challenges of remote Australia</h2>
<p>The <a href="http://www.pc.gov.au/research/ongoing/overcoming-indigenous-disadvantage/key-indicators-2014">state of disadvantage</a> in Indigenous communities presents a range of problems that exist outside of the NDIS’s scope and objectives. </p>
<p>There are many Indigenous communities where basic housing and utilities are either limited or absent. As such, many Indigenous people with disability have their energies focused on addressing the basics of day-to-day living.</p>
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<img alt="" src="https://images.theconversation.com/files/126851/original/image-20160616-19925-8u95ha.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/126851/original/image-20160616-19925-8u95ha.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/126851/original/image-20160616-19925-8u95ha.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/126851/original/image-20160616-19925-8u95ha.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/126851/original/image-20160616-19925-8u95ha.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/126851/original/image-20160616-19925-8u95ha.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/126851/original/image-20160616-19925-8u95ha.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">In remote regions, staff often have to travel hundreds of kilometres to deliver services to people.</span>
<span class="attribution"><span class="source">shutterstock.com</span></span>
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<p>The NDIA has been promoting the NDIS model as one that expands personal choice when it comes to the services and support people with disabilities can access. Yet individual choice requires service and support opportunities to exist in local communities. Limited opportunities, especially in remote communities, equates to limited choice for those on NDIS plans.</p>
<p>The <a href="http://caepr.anu.edu.au/sites/default/files/cck_indigenous_outcomes/2013/02/2011_CensusPaper_06_Disability.pdf">costs to deliver</a> supports and services to remote and very remote communities can be astronomical when compared with metropolitan regions. Research into remote service delivery conducted by the <a href="http://www.cadr.org.au/images/files/Remote_Indigenous_Service_Delivery_010614.pdf">National Disability Services</a> identified workforce shortages further inhibited service growth and development. </p>
<p>In remote regions, staff often have to travel hundreds of kilometres to deliver services to people. The distance between the regional centre of Alice Springs to another town in Central Australia, Tennant Creek, is 500km. </p>
<p>There is limited evidence to assess whether the NDIS can effectively and efficiently provide equitable opportunities for those living so far away from regional centres.</p>
<p>Research shows more than 13% of Indigenous adults have <a href="http://press-files.anu.edu.au/downloads/press/p298291/pdf/book.pdf?referer=250">provided unpaid assistance</a> to people with a disability, such as relatives; the highest number of these are in very remote communities. Establishing a system that enables people to recruit family members needs more discussion throughout the scheme’s rollout.</p>
<h2>Self-managed funds</h2>
<p>According to the <a href="http://fpdn.org.au/ten-point-plan-for-the-implementation-of-the-ndis-in-aboriginal-communities/">First People’s Disability Network</a>, the peak body representing Indigenous Australians with a disability, many Indigenous people need accessible support and training to self-manage their NDIS plans.</p>
<p>If we consider the language diversity among Indigenous communities, options for training in managing personalised NDIS plans may be limited for those with English as a second or third language.</p>
<p>Further, operating in a market-based system requires adequate access to information and skills in budgeting and book-keeping. Indigenous people who are socially isolated and don’t have either this information, or the skills or resources with which to seek help, may find these tasks difficult. </p>
<p>The NDIA will need to further explore these challenges as they plan and implement culturally responsive training and support programs for those who wish to self-manage their packages.</p>
<p>The principles of the World Health Organisation’s <a href="http://www.who.int/disabilities/world_report/2011/accessible_en.pdf.">twin-track approach</a> should be adopted in the roll-out of the NDIS. Broadly speaking, this approach aims to build specialist, targeted disability programs and supports for Indigenous people (such as Indigenous community controlled organisations) while simultaneously considering their needs in all generic policies, initiatives and programs. </p>
<p>The NDIS provides us an opportunity to address the gaps between Indigenous and non-Indigenous people with disabilities. But this should run parallel to government spending on specialist services and community controlled organisations.</p>
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<p><em>You can read previous stories on <a href="https://theconversation.com/understanding-the-ndis-many-eligible-people-with-disabilities-are-likely-to-miss-out-61016">groups likely to miss out</a> under the NDIS, and the risk to support services for <a href="https://theconversation.com/understanding-the-ndis-will-parents-of-newly-diagnosed-children-with-disability-be-left-in-the-dark-60795">parents with newly diagnosed</a> children with disability.</em></p><img src="https://counter.theconversation.com/content/57572/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>The NDIS provides an opportunity to address the shortfalls of the former institutionalised service system, some of which uniquely impact Indigenous Australians.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/610162016-07-06T20:06:15Z2016-07-06T20:06:15ZUnderstanding the NDIS: many eligible people with disabilities are likely to miss out<figure><img src="https://images.theconversation.com/files/127455/original/image-20160621-8894-n7lhdq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Homeless people are more likely to miss out on NDIS support.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/midgleyderek/12378648834/in/photolist-jRRP2U-5bJ6xf-fcCXbJ-fh2JtE-p4MAvK-qe2g4c-4NZSNV-wXNxG-6pmvig-5uaUJ3-9pTum5-ojwUfM-oyZcy8-p4MAyv-oByzvm-oAPp69-oofQ5b-ooeHGy-4LHWos-oBKmyq-sgJkHN-f85c7C-eXaU4b-f17tKw-f85SnN-8MAazW-fh2Jp9-fcoD1B-3qQEAg-oEtWDT-9nw2iJ-ozB1b3-f859pG-ap9rha-okU3Wf-oEKveX-ebGgvV-omENg3-oEGFth-dMN8y9-omDMZx-iN92Sy-oofrbx-oFHJ2B-oGuiH6-oEvWXC-f85SoQ-e7wYr8-fh2Joy-fcCW8J">Derek Midgley/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p><em>On July 1 2016, the National Disability Insurance Scheme (NDIS) moved from a trial phase to a full national roll-out. In this series on <a href="https://theconversation.com/au/topics/understanding-the-ndis">Understanding the NDIS</a>, we explore how the scheme works, why Australia needs it, and the issues to be addressed before eligible Australians, such as many Indigenous people with disability, can receive the benefits they are entitled to.</em></p>
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<p>The National Disability Insurance Scheme (NDIS) is designed to offer disability support packages – that is, money for disability support – to every Australian citizen under 65 with “<a href="http://www.pc.gov.au/inquiries/completed/disability-support/report">significant and ongoing support needs</a>”.</p>
<p>When the scheme is fully implemented in 2019, up to 10% of people with a disability – about 460,000 people – <a href="http://dro.deakin.edu.au/eserv/DU:30061988/wilson-consumerchoices-2014.pdf">are expected to receive</a> a disability support package.</p>
<p>However, many people eligible for the NDIS are likely to miss out on its benefits. These people fall into particular groups, such as those who may not think of themselves as having a disability, or people who may not know what the NDIS is or how to access it.</p>
<h2>Do I have a disability?</h2>
<p>Many people might not apply the label of disability to themselves, perhaps because of the discrimination and stigma associated with it. Others may not think they have a disability as defined by the NDIS because of a different understanding about diversity, perhaps due to age or culture.</p>
<p>For instance, research shows people from <a href="https://www.ahuri.edu.au/__data/assets/pdf_file/0010/7012/AHURI_Positioning_Paper_No168_Housing-and-Indigenous-people-living-with-a-disability-lived-experiences-of-housing-and-community-infrastructure.pdf">Indigenous</a> or other cultural and language-diverse backgrounds are less likely to use a disability label or use disability services. </p>
<p>Many people, such as children and their families, may believe support needs are the result of a developmental stage or, in the case of older people, a consequence of ageing.</p>
<p>For instance, behaviours such as aggression may be influenced by what the NDIS would label as social, cognitive or psychological and social disability. If the child or their family experiencing aggression believe it to be a phase, they wouldn’t think to ask for NDIS support. </p>
<p>Many people with disability currently do not use disability support services or do not have family to help them find support. These include some people <a href="https://assets.justice.vic.gov.au/corrections/resources/0423a0c6-958e-4847-904a-61032a59a7d9/intellectual_disability_in_the_victorian_prison_system.pdf">in the criminal justice system</a>, especially young people who are <a href="http://www.aic.gov.au/crime_types/in_focus/juvenilejustice.html">less likely to be identified</a> as having a disability. Others in this group are homeless or have mental health needs.</p>
<p>In addition to the NDIS packages, the intention is to refer people with disability to health, justice, housing and education services. All of these are state responsibilities. Whether support for a person with mental illness is a disability cost and should be paid for by the NDIS, or a general health cost covered by the state, are <a href="http://www.tandfonline.com/doi/abs/10.1080/0312407X.2013.771602">the kinds of details</a> still being negotiated.</p>
<p>In the meantime, people are confused and could miss out if states withdraw money from these services for people with disability or do not respond to increased demand, such as for <a href="http://www.ahuri.edu.au/research/final-reports/246">affordable housing</a>.</p>
<p>Then there is the issue of disability support for people with a severe and persistent mental illness. They are eligible for the NDIS if their disability is permanent. How this <a href="https://myplace.ndis.gov.au/ndisstorefront/about-us/operational-guidelines/access-disability-requirements.html">permanency will be defined</a> is still being worked out, but there is a risk people whose support needs fluctuate, such as <a href="https://www.aasw.asn.au/document/item/8274">due to periodic severe mental illness</a>, may think they do not qualify because they do not always need support. </p>
<h2>How to access the NDIS</h2>
<p>The design of the NDIS relies on people requesting support and making informed choices about how to receive it. In a <a href="http://www.tandfonline.com/doi/abs/10.1080/23297018.2014.908815">circle of exclusion</a>, people who need support paid for by the NDIS first need support to work out how to use and navigate the scheme.</p>
<p>The group of people likely to miss out for this reason are the many who are already marginalised in multiple ways, including due to socioeconomic disadvantage. </p>
<p>People with multiple and complex support needs are an example of this exclusion. They may have a variety of needs from a life that could include mental illness, drug and alcohol use, poverty, poor education, criminal justice contact and cultural and language barriers. </p>
<p>Or they may have particular circumstances, such as <a href="http://onlinelibrary.wiley.com/doi/10.1111/1467-8500.12073/abstract">living in a remote community</a>, that do not reconcile with the market-based structure of the NDIS.</p>
<p>Many of these <a href="http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2412810">people do not receive</a> other government support they are entitled to. That then means they are less likely to apply for the NDIS. Because without connections into other supports, they are <a href="http://bjsw.oxfordjournals.org/content/early/2012/10/07/bjsw.bcs141">less likely to know</a> how to navigate the new system. </p>
<p>The NDIS is still in the development stage and work is being done to reduce these risks of exclusion. This includes agreements with the states on how to ensure quality social support; transforming the disability sector to meet the needs of everyone entitled to use support; and building capacity for people with disability, families and professionals to understand their entitlements under the scheme.</p>
<p>Apart from readying social services so that quality support is available, the most important development will be information and advocacy throughout social services, so the public and professionals know how to reach out to people who could benefit from the NDIS.</p>
<hr>
<p><em>You can read today’s related article on the risk to support services for parents with newly diagnosed children with disability <a href="http://theconversation.com/understanding-the-ndis-will-parents-of-newly-diagnosed-children-with-disability-be-left-in-the-dark-60795">here</a>.</em></p><img src="https://counter.theconversation.com/content/61016/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Karen R Fisher receives funding from ARC. </span></em></p>Many people eligible for the NDIS are likely to miss out on its benefits. These groups include people who don’t think they have a disability and those who don’t know about the NDIS and how to apply.Karen R Fisher, Professor, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/580692016-07-05T20:07:08Z2016-07-05T20:07:08ZUnderstanding the NDIS: a history of disability welfare from ‘deserving poor’ to consumers in control<figure><img src="https://images.theconversation.com/files/124295/original/image-20160527-879-52xs1h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Choice and control reflect the first principle of the UN Convention on the Rights of Persons with a Disability.</span> <span class="attribution"><span class="source">from www.shutterstock.com</span></span></figcaption></figure><p><em>On July 1, 2016, the National Disability Insurance Scheme (NDIS) moved from a trial phase to a full national roll-out. In this series on <a href="https://theconversation.com/au/topics/understanding-the-ndis">Understanding the NDIS</a>, we explore how the scheme works, why Australia needs it, and the issues to be addressed before eligible Australians, such as many Indigenous people with disability, can receive the benefits they are entitled to.</em></p>
<hr>
<p>The National Disability Insurance Scheme (NDIS) is the only national scheme of its kind in the world. Its introduction has been likened to a generational shift with <a href="http://search.informit.com.au/documentSummary;dn=717060874668659;res=IELAPA">some saying the scheme’s impact</a> will be similar to that of Medicare. </p>
<p>Choice and control are the fundamental principles of the NDIS, which represents a break from previous welfare approaches. The scheme aims to empower consumers with a disability to use funds given to them to purchase services that reflect their lifestyle and aspirations.</p>
<p>This aligns with the first principle of the <a href="http://www.un.org/disabilities/convention/conventionfull.shtml">United Nations Convention on the Rights of Persons with a Disability</a>, to which Australia became a signatory in 2008. It’s based on <a href="http://espace.library.curtin.edu.au/R/?func=dbin-jump-full&object_id=153140&local_base=GEN01-ERA02">neoliberalist ideology</a> and models of <a href="http://www.tandfonline.com/doi/abs/10.1080/14719030903286615">consumerism</a> where those who consume services also have choice, participation, rights and redress. </p>
<p>It’s hoped these changes will see the service sector reflect the interests of people with disabilities. This is the culmination of society’s evolution towards respecting, protecting and ensuring the rights of people with a disability.</p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/128794/original/image-20160630-15282-1vplwq4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/128794/original/image-20160630-15282-1vplwq4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=1005&fit=crop&dpr=1 600w, https://images.theconversation.com/files/128794/original/image-20160630-15282-1vplwq4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=1005&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/128794/original/image-20160630-15282-1vplwq4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=1005&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/128794/original/image-20160630-15282-1vplwq4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1264&fit=crop&dpr=1 754w, https://images.theconversation.com/files/128794/original/image-20160630-15282-1vplwq4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1264&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/128794/original/image-20160630-15282-1vplwq4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1264&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Many people with disabilities were sent to beg ‘cap in hand’.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:An_old_beggar_with_a_wooden_leg_moves_with_the_aid_of_two_cr_Wellcome_V0020396.jpg">Wellcome Images/Wikimedia Commons</a></span>
</figcaption>
</figure>
<h2>The ‘deserving poor’</h2>
<p>Prior to the 1600s in the United Kingdom, most people with a disability <a href="http://shura.shu.ac.uk/4294/">were cared for</a> by their family. Public sentiment viewed those with disabilities as being sinners, possessed or moral degenerates (along with beggars criminals and prostitutes). They were <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1541-0072.1987.tb00728.x/abstract">often the focus</a> of humour and humiliation.</p>
<p>Many with disabilities <a href="https://www.amazon.com/Teaching-Diversity-Social-Justice-Maurianne/dp/041595200X">took refuge in monasteries</a> from where they were sent to beg “cap in hand” – the source of the term handicap – for charity, and many did not live long. </p>
<p>The roots of the welfare model go back to the United Kingdom’s <a href="http://shura.shu.ac.uk/4294/">Elizabethan Poor Laws</a> in 1601, which established parishes (jurisdictions reflecting land ownership by the gentry). These laws brought in the definition of the “impotent poor” – those unable to work and therefore to contribute to the local economy and parishes. </p>
<p>Under the welfare principle of “less eligibility”, housing and food provided to the impotent poor were so limited as to act as a disincentive to those believed to shirk work they could physically do. Nevertheless, the laws were the first recognition of the state’s responsibility to support the “deserving poor” – as opposed to the vagrants and layabouts.</p>
<p>The Poor Laws lasted more than 200 years, during which time people with disabilities remained impoverished and largely excluded from community. They lived hard and short lives in poorhouses funded through local taxation, relying on any other charity they received.</p>
<p>This model of charity and its associated philosophy influenced subsequent attempts to support people with disabilities in England, as well as Australia. </p>
<p>Large institutions known as asylums, designed to house people with mental illness and disabilities, were then built from the 1850s onwards evolving to reflect the growth of science and claims that medicine held a cure. History has condemned these asylums, which sometimes housed more than a thousand residents, as regimented and cruel. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/128795/original/image-20160630-15259-q1v1jx.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/128795/original/image-20160630-15259-q1v1jx.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/128795/original/image-20160630-15259-q1v1jx.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/128795/original/image-20160630-15259-q1v1jx.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/128795/original/image-20160630-15259-q1v1jx.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/128795/original/image-20160630-15259-q1v1jx.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/128795/original/image-20160630-15259-q1v1jx.png?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">History has condemned asylums as regimented and cruel.</span>
<span class="attribution"><a class="source" href="https://en.wikipedia.org/wiki/Dunwich_Benevolent_Asylum#/media/File:Queensland_State_Archives_2425_View_of_Benevolent_Asylum_Dunwich_North_Stradbroke_Island_10_June_1937.png">Agriculture And Stock Department, Publicity Branch/Wikimedia Commons</a></span>
</figcaption>
</figure>
<p>In these institutions, residents gave up decision-making, autonomy and identity to the system, which <a href="https://www.amazon.com/Asylums-Essays-Situation-Patients-Inmates/dp/0385000162">led to calls to release</a> them from institutions into the community.</p>
<h2>In the community but not ‘of it’</h2>
<p>Resettlement back into the community started around the 1970s in Australia. Community care policies aimed to provide support, education, employment, housing and inclusion services.</p>
<p>Forty years after community care started, people with disabilities are living longer. Yet in 2009, <a href="https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/shut-out-the-experience-of-people-with-disabilities-and-their-families-in-australia">a report based on consultation</a> with people with disabilities found there was still little social inclusion, poor quality disability services and high unemployment.</p>
<p>Block funding and services assuming a one-size-fits-all approach were common under the welfare model. Funding went directly to a provider of goods and services, not the person buying the services. And the limited range of services couldn’t respond to the diverse needs of people with disabilities.</p>
<p>Then in 2011, the <a href="http://www.pc.gov.au/inquiries/completed/disability-support/report">Productivity Commission found</a> the support system gave people with disability little choice and no certainty of access to appropriate supports. It recommended that since most families and individuals could not prepare for the risk and financial impact of disability in their family, a scheme similar to Medicare based on insurance, should be implemented. So came the NDIS.</p>
<p>Under then Prime Minister Julia Gillard, a levy was introduced for all taxpayers, so anyone would benefit from the scheme if needed. Such insurance schemes are not new and have <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1467-8462.2013.12032.x/abstract">previously been used</a> in places such as Victoria by the Traffic Accident Commission for those injured in road accidents.</p>
<p>Even though participants must be assessed as having a significant and enduring disability (a continuation of one aspect of the old welfare model), a progressive pillar of the NDIS is that block funding is replaced with individualised funding packages.</p>
<h2>Issues with ‘choice for all’</h2>
<p>If none of the NDIS elements are unique on their own, their combination is new and innovative. The NDIS seems a worthy investment which, on the face of it, achieves our common wish to treat all humans with dignity and as equal citizens.</p>
<p>But there are several issues still to be resolved. How to maximise choice remains a key problem – particularly for those unable to make these choices without support. </p>
<p>The majority of NDIS participants are electing to have their funds financially managed for them, or co-managed with agencies. Only 7% solely self-manage their funds. The <a href="http://ndis.gov.au/sites/default/files/documents/Quarterly-Reports/11-report-coag.pdf">National Disability Insurance Agency emphasises</a> that people with disabilities can still make their own choices even where they do not manage their own finances, but this is yet to be seen.</p>
<p>Many of the other scheme’s benefits remain untested. The present arrangements raise questions about the effect on those who don’t qualify for funding packages – such as those with episodic or temporary illnesses and impairments requiring some level of support, but not sufficient to access NDIS funding. The Information, Linkage and Capacity building (ILC) framework has been designed to support these groups but clear evidence on coverage and outcomes from the trial sites is yet to emerge.</p>
<p>Finally, in a largely individualised system, the place of the collective voice of people with disabilities – the voice that helped the NDIS through parliament – is yet to feature. We need continual transformation and funding capable of maintaining a consistent dialogue for change between the NDIS as duty bearers and people with disabilities as rights holders.</p>
<hr>
<p><em>You can read the accompanying piece on how the NDIS works and who is eligible for funding under the scheme <a href="https://theconversation.com/understanding-the-ndis-how-does-the-scheme-work-and-am-i-eligible-for-funding-58726">here</a></em></p><img src="https://counter.theconversation.com/content/58069/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Ramcharan has received funding from ARC, FaCHSIA, DHS (Federal), DHS now DHHS (Victoria), VicHealth, Baptcare,Brotherhood of St. Laurence, Government of ACT.. </span></em></p>Society hasn’t always seen people with disabilities as having the same rights at everyone else. So how did we get to the NDIS, which offers people with disabilities with choice and control?Paul Ramcharan, Associate Professor, Centre for Applied Social Research, RMIT UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/587262016-07-05T20:07:03Z2016-07-05T20:07:03ZUnderstanding the NDIS: how does the scheme work and am I eligible for funding?<figure><img src="https://images.theconversation.com/files/127481/original/image-20160621-13022-1aoohd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The NDIS brings seismic changes to disability support in Australia.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p><em>On July 1 2016, the National Disability Insurance Scheme (NDIS) moved from a trial phase to a full national roll-out. In this series on <a href="https://theconversation.com/au/topics/understanding-the-ndis">Understanding the NDIS</a>, we explore how the scheme works, <a href="https://theconversation.com/understanding-the-ndis-a-history-of-disability-welfare-from-deserving-poor-to-consumers-in-control-58069">why Australia needs it</a> and the issues to be addressed before eligible Australians, such as many Indigenous people with disability, can receive the benefits they are entitled to.</em></p>
<hr>
<p>The National Disability Insurance Scheme (NDIS) has been trialled in selected Australian sites over the past three years. It is now <a href="https://myplace.ndis.gov.au/ndisstorefront/news/david-bowen-letter-editor-geelong-ad.html">providing funding packages to more than 25,000</a> Australians under 65 who have a permanent impairment that substantially reduces their intellectual, cognitive, neurological, sensory, physical, psychological and social functioning.</p>
<p>The number receiving the packages is <a href="https://myplace.ndis.gov.au/ndisstorefront/news/ndis-roll-out-starts-today.html">expected to grow to about 460,000</a> when the scheme becomes fully operational in July 2019. When NDIS participants turn 65, they have the option to stay in the scheme or receive support through aged care services. People who develop impairments from 65 years onwards receive aged care support.</p>
<p>There are <a href="http://www.abs.gov.au/AUSSTATS/abs@.nsf/0/56C41FE7A67110C8CA257FA3001D080B?Opendocument">4.3 million Australians</a> aged 16 to 65 with disability and many will not meet the criteria to be eligible for the NDIS. They may still receive assistance through the scheme’s <a href="https://myplace.ndis.gov.au/ndisstorefront/communities/ilc-home.1.html">newly introduced program</a> providing information, linkages and referrals to connect people with disability, their families and carers with community and mainstream supports.</p>
<p>The NDIS will not replace the Disability Support Pension, which provides <a href="https://www.humanservices.gov.au/customer/services/centrelink/disability-support-pension">income support through Centrelink</a> to people aged 16 to 65 who are unable to work because of their disability. The NDIS provides additional funding to meet the special needs of a person with disability, such as to buy a wheelchair or have assistance at home.</p>
<h2>Why do we need the NDIS?</h2>
<p>The NDIS was established in response to a 2011 <a href="http://www.pc.gov.au/inquiries/completed/disability-support/report">Productivity Commission</a> report that found disability services were “underfunded, unfair, fragmented and inefficient”. The commission recommended a system of flexible individual funding packages that could be used to purchase disability supports. </p>
<p>Before the NDIS, state governments contracted disability service providers to deliver specified services. For instance, some delivered personal care in the home, while others provided day activity centres and other services for people with intellectual disability.</p>
<p>Service provision across different states varied. The person receiving support was usually assigned to one disability service provider and restricted to the supports that agency provided, even when they wanted something different. It was also difficult for people to change service providers.</p>
<p>Disability activists supported the 2011 recommendations for the NDIS scheme and its focus on choice and empowerment to help those with disability meet their goals.</p>
<p>The amount allocated by the NDIS varies across individuals. Some eligible people in trial sites haven’t received any funding, such as when their goals were to maintain informal contact with family and friends. By contrast, some received large allocations, including those leaving disability institutions who needed considerable support to live in a five-person group home, a shared flat, or alone with support. The <a href="https://myplace.ndis.gov.au/ndisstorefront/html/sites/default/files/documents/Quarterly-Reports/11-report-coag.pdf">average individual allocation</a> to date is A$39,600.</p>
<h2>How do I know if I’m eligible for the NDIS?</h2>
<p>People with disability, or their family or advocate, can use the <a href="https://myplace.ndis.gov.au/ndisstorefront/ndis-access-checklist.html">NDIS eligibility check list</a> to see if they are eligible. If so, they can then apply to receive support through the NDIS. If their application is accepted, a planning conversation is held with an NDIS representative about the person’s life situation, current supports and hopes for the future. </p>
<p>NDIS funding is available for “reasonable and necessary supports” for people with disability to live a life as “ordinary” as possible. The <a href="https://myplace.ndis.gov.au/ndisstorefront/index.html">NDIS website</a> has two useful booklets explaining NDIS eligibility, what it aims to do and how it works. These are: <a href="https://myplace.ndis.gov.au/ndisstorefront/participants/planning-process.html">My NDIS Pathway</a> – Your guide to being an NDIS participant; and <a href="https://myplace.ndis.gov.au/ndisstorefront/html/sites/default/files/R2-NDIS%20Ready%20Communications%20Toolkit%20A4%20.pdf">NDIS Ready</a> — Communications Toolkit.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/129287/original/image-20160705-19098-1ntdswi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/129287/original/image-20160705-19098-1ntdswi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/129287/original/image-20160705-19098-1ntdswi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/129287/original/image-20160705-19098-1ntdswi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/129287/original/image-20160705-19098-1ntdswi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/129287/original/image-20160705-19098-1ntdswi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/129287/original/image-20160705-19098-1ntdswi.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">Funding packages can be used to purchase aids such as wheelchairs and hearing aids.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>This <a href="http://www.austlii.edu.au/au/legis/cth/num_act/ndisa2013341/">includes funding</a> for:</p>
<ul>
<li>helping people with personal care such as getting in and out of bed and showering, managing money, house cleaning and other domestic activities</li>
<li>aids and equipment such as wheelchairs and hearing aids</li>
<li>psychological, social and speech therapy and physiotherapy</li>
<li>social participation activities such as in clubs</li>
<li>transport so people can stay in touch with friends and their community.</li>
</ul>
<p>Because the NDIS assigns funding to individuals, traditional service provider agencies will lose their government contracts and have to compete in a market environment to attract customers.</p>
<p>Supports can be purchased from any registered disability or mainstream services as long as they are in line with the person’s goals. A gym or social club membership can be included in a person’s plan. </p>
<p>A formal review meeting is held after 12 months, or earlier if requested, and changes made as required.</p>
<p>Individuals with allocated funding can select a registered service provider to manage and provide their support, or they can self-manage and negotiate the supports specified in their agreed plan, including employing their support workers. </p>
<p>Often family members can do this work on the person’s behalf. Only <a href="https://myplace.ndis.gov.au/ndisstorefront/html/sites/default/files/documents/Quarterly-Reports/11-report-coag.pdf">7% of participants choose to self-manage their funds</a>, while 35% combine self-management and agency management and 58% are fully agency-managed.</p>
<h2>Positives and issues that need fixing</h2>
<p>Early evaluations indicate that people like having the increased control and choice offered by the NDIS. One <a href="https://myplace.ndis.gov.au/ndisstorefront/document/outcomes-framework-pilot.html">evaluation found</a> 76% of participants were satisfied with the scheme. People reported improvements in living conditions (71%), health and well-being (60%) and more social, community and civic participation (42%).</p>
<p>Anecdotal reports from trial sites indicate many were initially confused by the changes and needed considerable information and support before they could use the NDIS effectively. The recent introduction of information, linkages and capacity-building (ILC) and local area co-ordinators (LACs) services is designed to address this problem.</p>
<p>But the NDIS <a href="https://myplace.ndis.gov.au/ndisstorefront/html/sites/default/files/documents/capability_review_2014_3.pdf">has been likened to</a> “a plane that took off before it had been fully built and is being completed while it is in the air”.</p>
<p>People with social, cognitive and emotional impairments may find it challenging meeting requirements to apply for the scheme, seek information and negotiate their supports, even with the help provided. The <a href="https://theconversation.com/understanding-the-ndis-many-eligible-people-with-disabilities-are-likely-to-miss-out-61016">most disadvantaged may miss out</a>, particularly those from low socioeconomic and diverse cultural backgrounds. </p>
<p>Service providers face uncertain futures with governments ending their block funding. They have to compete to attract customers who choose their services. The government has been successful in stimulating competition and the service provider market is still evolving.</p>
<p>The NDIS is trying to address these issues. It is early days and the full impact of the scheme is to be determined.</p>
<hr>
<p><em>You can read the accompanying piece exploring the evolution of society’s views on disability <a href="https://theconversation.com/understanding-the-ndis-a-history-of-disability-welfare-from-deserving-poor-to-consumers-in-control-58069">here</a>.</em></p><img src="https://counter.theconversation.com/content/58726/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dr Carmel Laragy has received federal government research funding to study individual funding programs and the NDIS workforce. </span></em></p>The National Disability Insurance Scheme has been heralded as the most significant reform since Medicare. So what is it again, how will it work and how can you apply to get funding?Carmel Laragy, Senior Research Fellow, RMIT UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/476902015-09-29T00:52:23Z2015-09-29T00:52:23ZBringing the NDIS home: smarter housing design for people with disability<p>Australia’s A$22 billion National Disability Insurance Scheme (<a href="http://www.ndis.gov.au/">NDIS</a>) remains a key policy of the Coalition government. One of Prime Minister Malcolm Turnbull’s first major tasks was to sign agreements for statewide roll-outs of the NDIS in <a href="http://www.dhs.vic.gov.au/__data/assets/word_doc/0018/923031/Bilateral-Agreement-and-Phasing-fact-sheet.doc">Victoria</a> and <a href="http://ndis.nsw.gov.au/wp-content/uploads/2015/07/Bilateral-Agreement-between-the-Commonwealth-and-New-South-Wales-2.pdf">New South Wales</a> by 2019.</p>
<p>The agreements provide some insights into the interface of housing and the NDIS. They also document that the scheme will complement, but cannot replace, efforts of the housing sector, governments and families. A framework for funding NDIS participants and specialist disability housing providers is due to be released later this year. </p>
<h2>NDIS still leaves a housing gap</h2>
<p>The NDIS will provide <a href="http://www.ndis.gov.au/participants/reasonable-and-necessary-supports">“reasonable and necessary”</a> equipment and supports for Australians with disability. However, the National Disability Insurance Agency has previously identified a significant housing gap for an anticipated <a href="http://chfa.com.au/sites/default/files/sites/default/files/docs/bonyhady_bruce_-_presentation_-_chfa_ndis_forum_-_27_march_2014.pdf">83,000 to 122,000 scheme participants</a>.</p>
<p>The 2015 report from the <a href="http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Economics/Affordable_housing_2013/Report">Senate inquiry</a> into affordable housing described this as an economic issue of national importance. Access to affordable housing, the report said, needs to be a “central and cross-cutting theme” within a whole-of-government approach.</p>
<p>One group that needs lifetime housing and support are people with severe traumatic brain injury (TBI) and spinal cord injury (SCI). Australia has an estimated 1000 new cases of severe TBI and 136 new cases of high-level SCI or quadriplegia every year. Lifetime costs per case are estimated at <a href="https://www.tac.vic.gov.au/about-the-tac/our-organisation/research/tac-neurotrauma-research/vni/the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia.pdf">$4.8 million to $9.5 million</a>. </p>
<p>The Transport Accident Commission (<a href="http://www.tac.vic.gov.au/">TAC</a>), Victoria’s no-fault road accident insurance scheme, has also identified a significant housing gap for its clients. Many live with TBI or SCI resulting from road accidents. </p>
<h2>Opening doors to more independent living</h2>
<p>The TAC has been developing new models of housing and support through Residential Independence Pty Ltd (<a href="http://www.tac.vic.gov.au/content/content/what-the-tac-pays-for/treatment-and-support-services/residential-independence-pty-ltd">RIPL</a>). The aim is to provide options for more independent living.</p>
<p><a href="http://www.tac.vic.gov.au/content/content/what-the-tac-pays-for/treatment-and-support-services/residential-independence-pty-ltd/abbotsford-ripl-units">RIPL Project One</a> was a collaboration between the TAC and the <a href="https://www.summerfoundation.org.au/">Summer Foundation</a>, a non-profit organisation focused on the issue of young people in nursing homes. The project delivered six smart-technology-enabled one-bedroom apartments within a 59-apartment private and social housing development in inner-city Melbourne. An on-site support staff hub provides outreach to tenants of the six apartments. </p>
<p>Tenants of RIPL Project One moved from living with family or friends, or traditional disability group home models. This was an exciting step on a pathway back to community living. </p>
<p>The mother of one tenant – Matthew* – said:</p>
<blockquote>
<p>When we see Matthew living independently … we just feel so happy and proud for him … When I see him in his own environment, in his new apartment, it’s wonderful.</p>
</blockquote>
<h2>Continuously refining supported housing</h2>
<p>In the past, investment in new supported housing (such as the $60 million federal <a href="https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-service-providers/supported-accommodation-innovation-fund-saif">Supported Accommodation Innovation Fund</a>) has not included evaluation of the effectiveness of housing design and location. Investment in <a href="https://www.researchgate.net/publication/278674067_Learning_from_hindsight_Experience-centred_evaluation_of_a_new_supported_accommodation_environment">“learning from hindsight”</a> can inform new projects if evaluation is carefully developed and effectively delivered. </p>
<p>The TAC has invested in a large-scale <a href="http://www.iscrr.com.au/research/programs/neurotrauma/ripl_project_one_post_occupancy_built_technology_design_evaluation_executive_summary.pdf">post-occupancy evaluation</a> of RIPL Project One, through the <a href="http://www.iscrr.com.au/">Institute for Safety, Compensation and Recovery Research</a>. This evaluation has been coupled with detailed actuarial cost-benefit analysis to guide future investment. This research was awarded an international <a href="http://edra.org/sites/default/files/EDRA%20CORE%20Award%20winners%20announced_FINAL.pdf">Certificate of Research Excellence</a> from the Environmental Design Research Association.</p>
<p>The post-occupancy evaluation findings have been documented in <a href="https://www.youtube.com/watch?v=LeiUScqa8NU&index=5&list=PLhWIY4UVRfHN6vj7z_LuV_tjiY0Ui7km4">an interactive PDF report</a>. This details key evaluation criteria and includes virtual panoramic tours. Viewers can explore the housing and technology design, the support delivered within these environments, and tenants’ access to and use of spaces.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/LeiUScqa8NU?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The RIPL Project One’s supported housing evaluation and panoramic tour.</span></figcaption>
</figure>
<p>The research findings highlight the potential for an NDIS interface with housing provision. This has impacts on the quality of home life and social and economic participation for Australians with disability. </p>
<h2>Creating better homes for people with disability</h2>
<p>Key considerations include: </p>
<ul>
<li><p><strong>Site location and planning</strong>: well-located housing close to accessible shops, public transport and other services builds community participation and inclusion.</p></li>
<li><p><strong>Dwelling layout and planning</strong>: control of light, temperature and noise improves running costs of a home; layout builds tenant privacy; tailoring of joinery installation increases independence and reduces support needs.</p></li>
<li><p><strong>Housing transition</strong>: site visits and familiarisation, and building links in the local community, with follow-up monitoring and support for effective routines, foster participation and independence.</p></li>
<li><p><strong>Smart home technology</strong>: training and consistent use of integrated technologies by tenants and support staff avoid technology abandonment and build autonomy and environmental control. </p></li>
<li><p><strong>Model of support</strong>: exemplary built and technology design must be coupled with targeted disability supports to build skills for independent living.</p></li>
</ul>
<p>As housing and support models are developed, iterative post-occupancy evaluation will build an evidence base of tenant experiences, outcomes, costs and benefits, and opportunities. This will inform well-designed, well-located housing using smart technology into the future. </p>
<p>Turnbull’s leadership of NDIS roll-outs must now be coupled with a co-ordinated whole-of-government approach to best-practice housing for people with disability. Strengthening NDIS implementation with a national housing strategy will reap both social and economic benefits for Australia.</p>
<hr>
<p><em>* You can watch Matthew’s digital story <a href="http://www.tac.vic.gov.au/content/content/what-the-tac-pays-for/treatment-and-support-services/residential-independence-pty-ltd/abbotsford-ripl-units">here</a>.</em></p><img src="https://counter.theconversation.com/content/47690/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Libby Callaway receives funding from the Institute for Safety, Compensation and Recovery Research. Libby is also employed by the Summer Foundation, a non-profit organisation focussed on the issue of young people with disability living in nursing homes.</span></em></p><p class="fine-print"><em><span>Kate Tregloan receives funding from the Institute for Safety, Compensation and Recovery Research. </span></em></p>As the NDIS roll-out begins, Australia faces a housing shortfall affecting up to 122,000 participants. Developing smart technology and design offers more independent living for people with disability.Libby Callaway, Researcher, Occupational Therapy Department, Monash UniversityKate Tregloan, Researcher in Design and Education in the Creative Disciplines, Monash UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/446612015-08-27T04:25:12Z2015-08-27T04:25:12ZThe baby and the bathwater: let’s keep the NDIS but slow down its roll-out<figure><img src="https://images.theconversation.com/files/93109/original/image-20150827-15403-is692t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Most Australians have embraced the idea of having a national disability scheme.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/anjan58/7272291392/">Anjan Chatterjee/Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span></figcaption></figure><p>Former Treasury secretary Martin Parkinson has <a href="http://www.theaustralian.com.au/business/in-depth/national-reform-summit-ndis-too-big-says-martin-parkinson/story-fnwjr2ka-1227500366040">expressed doubts</a> about the financial viability of the National Disability Scheme (NDIS), which is being trialled in various locations around Australia. </p>
<p>But the scheme is a significant step forward for this country and it’s too early to throw out the baby with the bathwater. Indeed, most Australians have embraced the idea of having a national disability scheme, so it’s time to focus on a realistic implementation plan, both in terms of required resources and the time frame for rolling it out. </p>
<p>Implementation will require close husbanding and an open mind. Two years into the trial, it might be time to step back and regroup, rather than prematurely withdrawing from the scheme or sticking with the current timetable without addressing the problems we’ve discovered so far. </p>
<h2>No easy ride</h2>
<p>There’s no doubt that the NDIS is one of the most ambitious and significant projects recently undertaken in Australia. It will deliver resources to a sector that badly needs them. While the states have traditionally been responsible for funding disability services, the NDIS will also bring into the mix badly needed Commonwealth funds via a 0.5% increase in the Medicare levy. </p>
<p>Essentially, the NDIS is a resource delivery system. It entails assessing the needs of people with disability for the appropriate level of funding with which they can shop around to buy the services they need. With actual users in charge of buying services, armed with more money, the theory is that a stronger and more efficient supply will develop – at lower prices. </p>
<p>But for this to hold true, future service providers must be able to deliver services at costs lower than the current funding levels borne by governments – because the A$22 billion allocated to the NDIS must stretch to cover existing and anticipated demand. </p>
<p>The scheme is also likely to increase the number of people able to access disability services. And while the pot of money earmarked for disability services is not intended to change, demand will likely increase, so the average amount paid to service providers will have to shrink.</p>
<p>And this is just one of the three fundamental problems associated with the NDIS roll-out. We don’t know how many people need services or what those services might be; we don’t know what it costs to provide the services; and the NDIS is trying to approach all disabilities and all locations in a uniform manner. This approach is problematic because costs, service types and demand are very different across locations and across disability types. </p>
<h2>Outstanding issues</h2>
<p>The establishment of the NDIS didn’t include reviews of the services being delivered in Australia, the amount of unmet need, or the actual cost of such services. Some estimates for demand, for instance, have <a href="http://www.news.com.au/national/breaking-news/ndis-demand-wont-affect-services-fifield/story-e6frfku9-1227440235494">turned out to be half</a> of what’s actually been found in the trial. </p>
<p>These issues <a href="http://www.ndis.gov.au/document/889">were identified</a> at the scheme’s first anniversary, and remain pertinent a year later. Further, the initial cost estimate of A$22 billion now plagues the roll-out as the NDIS attempts to shoe-horn the unexpectedly high demand into an apparently fixed resourcing capacity. </p>
<p>Making matters worse, the administrative cost of the system has also been underestimated.</p>
<p>Ultimately, these issues pose a risk that will be borne by the service recipients themselves, the people living with disability whom this scheme is supposed to help. </p>
<p>It may be that the best thing we can do is to stop the NDIS roll-out so we can undertake much-needed research to clearly see what its costs and demand levels are, plan the roll-out process properly and develop an open national conversation taking into account all positions. Then we can set our minds on how best to proceed.</p><img src="https://counter.theconversation.com/content/44661/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Gilchrist receives funding from governments and peak bodies to carry out research aimed at increasing our understanding of the NDIS and the broad Not-for-profit environment. He is chairman of Nulsen Disability Services and Chairman of the Kimberly Individual and Family Support Association.</span></em></p>Two years into the trial of the National Disability Insurance Scheme, it’s time to step back and address the problems we’ve discovered so far – rather than withdrawing from the scheme prematurely.David Gilchrist, Director of the Curtin Not-for-profit Initiative & Author of the National Disability Costing and Pricing Framework, Curtin UniversityLicensed as Creative Commons – attribution, no derivatives.