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INTERVIEWS

THE HON JANE PRENTICE MP

ASSISTANT MINISTER FOR SOCIAL SERVICES AND DISABILITY SERVICES

ROB DE LUCA

CEO, NATIONAL DISABILITY INSURANCE AGENCY (NDIA)

GRAEME HEAD

NDIS QUALITY AND SAFEGUARDS COMMISSIONER

ROSS JOYCE

CEO, AUSTRALIAN FEDERATION OF DISABILITY ORGANISATIONS

SPECIAL NDIA/NDIS SECTION

REGISTRATION PLAN MANAGEMENT SUPPORT COORDINATION NDIS CASE STUDIES QUALITY AND SAFEGUARDS COMMISSION • EMPLOYMENT • MENTAL HEALTH • TRANSPORT • LIVING & HOUSING


Client Story

Nick (left) and Alex (with mentor Jess), are living their lives, their way. Photo: Bec Lewis – www.blimaging.com.au

FULL LIVES WITH BRIGHT FUTURES In a sunny corner of a major Australian city lies the beautiful, modern (and neat as a pin) home of two Life Without Barriers clients … meet Nick and Alex! Nick and Alex met at The Hub (a social meeting space for young men with disability) and soon realised they had similar interests. They developed a fast friendship, and this resulted in them exploring accommodation options and eventually moving in together. Prior to the big move, Nick was living with his parents and Alex was in a group house with another service.

Nick, the quiet achiever, is a keen sportsman and has won numerous trophies for basketball, soccer and tennis. He also works a few days a week in a local bakery as a kitchen hand and loves it. When asked about living with Alex, Nick says: “We get along really well and we have bonded. I have really liked getting to know more about him.”

With the support of their families and Life Without Barriers mentors, the transition into independent living has been a great success. Alex and Nick have a roster of domestic tasks, cooking duties and fun activities all planned out and stuck on the fridge. They also have their own time to go to work and pursue their individual interests.

‘ We are the perfect match as housemates ’

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Alex, more outgoing and cheeky, possesses impressive chef skills and has a keen interest in all things music and movies. He works a couple of days a week doing commercial

grounds maintenance and residential gardening, which he really enjoys as he loves being outdoors. Alex says: “Nick is really sporty and I love how he brings so much energy to life. He encourages me. He is an inspiration to me and everyone around him. We are the perfect match as housemates.” They say their Life Without Barriers mentor Jess is “fun, has heaps of energy, helps us with some chores, listens to us, and is... LOUD”. When Jess talks about Nick and Alex, she beams: “They are two very strong characters who love to have fun, but they are also striving for goals. They are now living independently and are ambitious young men – which is my favourite part of working with them. They already have better social lives than me, they’re flourishing, and doing an amazing job. At the moment their future is anything they want it to be.”


LIFE WITHOUT BARRIERS

YOUR NDIS PROVIDER

Life Without Barriers is a not for profit, social purpose organisation working in more than 440 communities Australia wide. Our services currently support just over 18,000 people living in their own homes or in residential houses that we manage. At Life Without Barriers, we know it’s important for your needs to be met with the right supports, at the right time. That’s why our experienced teams tailor supports around you, to help you live the life you want. Through the NDIS, Life Without Barriers provides a range of services including: • Shared and Supported Living • Lifestyle Supports • Health, Therapy and Wellbeing • Support Coordination Contact Life Without Barriers today to talk to our staff on how we can partner with you to live your life, your way.

T. 1800 WE LIVE (1800 935 483) E. yourlwb@lwb.org.au W. www.lwb.org.au

Supporting People with Disability


CONTENTS MINISTER INTERVIEW.............. 11 Hon Jane Prentice MP, Assistant Minister for Social Services and Disability Services.

NDIA NEWS............................. 16 A round-up of the latest National Disability Insurance Agency news.

NDIA INTERVIEW..................... 19 An interview with Rob De Luca, CEO, National Disability Insurance Agency (NDIA).

REGISTRATION......................... 25 We look at the process of becoming an NDIS provider – and how to make it as smooth as possible.

PLAN MANAGEMENT.............. 30

them into managing their own plans independently.

NDIS CASE STUDIES................ 42 Real-life examples of how NDIS is changing lives.

INTERVIEW COMMISSIONER... 49 An interview with Graeme Head, NDIS Quality and Safeguards Commissioner.

QUALITY AND SAFEGUARDS COMMISSION.......................... 54 In order to achieve its goals, a national scheme for delivering services to people with disability requires a safeguarding framework of guidelines and an independent body to monitor service quality.

What options do NDIS participants have for creating and managing their plans? National Disability OUTLOOK explains the choices available.

EMPLOYMENT......................... 60

SUPPORT COORDINATION...... 34

MENTAL HEALTH.................. 69

The Coordination of Supports role was created as part of the NDIS to assist participants with higher needs, and to transition

With the Disability Employment Services reform upon us, what will it mean for participants and what will the effect be on the industry?

Mental Health Australia CEO Frank Quinlan speaks about how we are all the architects and builders of the NDIS.


CONTENTS REGIONAL............................... 74 With more than two thirds of Australia’s population living in capital cities, it is little wonder that one of the most significant challenges for people living with disability in regional areas is accessing the support they need.

FOSTER CARE.......................... 80 After spending many years in foster care, Sally represents a small but important demographic of care-leavers who require high-level care in order to live independently and contribute positively to the community.

AFDO INTERVIEW.................... 84 An interview with Ross Joyce, CEO, Australian Federation of Disability Organisations.

TRANSPORT............................. 88 One area of disability services that

has made significant gains in recent years is transport and mobility.

ASSISTED TRAVEL.................... 94 People with disability have increasingly become active travellers and a range of organisations have evolved to cater to their needs.

TECHNOLOGY......................... 98 Technology and innovation is having a profound impact on those with disabilities, who are now able to connect with their homes and the outside world in ways that greatly improve their quality of life.

LIVING & HOUSING............... 100 Digital technology has had a profound impact on just about everything over the past 20 years and nowhere is this moreapparent than in the design and implementation of housing features for people with disability.


National Disability

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INTERVIEW WITH

HON JANE PRENTICE MP

ASSISTANT MINISTER FOR SOCIAL SERVICES AND DISABILITY SERVICES

was clear that the existing system did not work. This led to the Australian Government and States and Territories agreeing to establish the National Disability Insurance Scheme (NDIS). The scheme is a world first, providing lifelong, tailored support for people with permanent and significant disability, their families and carers. There is much more to do, but Australia is heading in the right direction. What are your priorities in your portfolio as you approach this task? As a society, do you feel Australia is succeeding in making life better and easier for people with disability? Where are we succeeding and where are we deficient? Australia has taken significant steps to improve the lives of Australians with disability, their families and carers. The first National Disability Strategy 2010-2020 led to a number of initiatives in education, health, employment, community support, advocacy and legislation, and access to vital services and facilities such as public transport, housing, public buildings, digital information and technologies, and sport, recreation and culture. It was the first time in Australia’s history that all levels of government committed to a unified, national approach to supporting people with disability. After more than 1000 submissions were lodged by people with disability and the disability sector as part of a 2011 Productivity Commission review into disability care and support, it

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One of my priorities is employment, helping people with disability find and keep a job. Work provides security and independence and gives people a sense of responsibility and self-worth. Research also shows that workplaces benefit from employing people with disability. Benefits like improved productivity and improved workplace culture have been well documented. Yet people with disability still often struggle to find work. Almost 400,000 people with disability were placed in a job under the existing Disability Employment Services program. While this is encouraging, only 53 per cent of working-age Australians with disability are participating in the workforce, much lower than the 83 per cent of working-age Australians without disability. We must do better. Another priority is the NDIS. The National Disability Insurance Agency (NDIA) has been established to implement the scheme. The roll out is

on track. When fully implemented in 2020, the NDIS will provide funding to 460,000 Australians with disability and contribute to the creation of between 60,000 and 90,000 jobs, significantly expanding the disability services network across Australia. From 2014–15 to 2019–20, the NDIS will account for one in five new jobs in Australia. Another focus is support for carers. More than 2.7 million Australians care for someone who needs help due to disability, age, mental illness or long-term physical illness. Our Government recognises the challenges carers face and recently announced the introduction of early-intervention supports to help manage their daily challenges, reduce stress and plan for the future. Are you happy with the way the Commonwealth is working with the states and territories to deliver funding and programs to the disability sector? Could it be improved? The Australian Government is working well with the States and Territories through our joint commitment to the National Disability Strategy, the Council of Australian Governments and funding the NDIS. As this first National Disability Strategy draws to a close in 2020, its evaluation will provide guidance on how we continue to work together in the future. Our collaborative work also extends to providing effective disability advocacy services. Independent advocacy provides

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unique and specialised support to people with disability with additional complex and often serious issues, such as criminal and child protection cases, domestic violence situations and unresolved complaints issues. Advocacy is the responsibility of all levels of government. It is vital that all 4.3 million Australians with disability, regardless of where they live or whether they are an NDIS participant, have equitable access to disability services including independent advocacy to ensure their rights are promoted and protected. With the great challenges of rolling out something as complex as the NDIS, there are always going to be difficulties and challenges in the early phase. How do you assess the roll out and can you describe some of the challenges, but more importantly,

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some of the great successes being achieved under the new scheme? The NDIS is a significantly better way of providing support for Australians with significant and permanent disability, their families and carers. The size and scale of the NDIS means it is a major reform to Australia’s specialist disability support system and that it will not be without challenges. The NDIS is one of the biggest social reforms since the introduction of Medicare. More than 162,000 Australians with disability are already benefitting from the scheme. As of 31 March 2018, almost 45,000 people were receiving disability support services for the first time. Reaching these people is a significant achievement. I acknowledge that not everyone’s

experience with the NDIS has been good. However, that should not be unexpected with a reform of this magnitude. We have been listening to participants and service providers about what works and what does not, as well as collecting ideas on how to make their experience easier. Significant improvements to the experience and engagement that participants and providers have with the scheme are now being implemented. The Australian Government is committed to supporting the development of a vibrant and robust disability support services market and the required workforce as the NDIS rolls out. More than 14,200 providers are now registered to deliver services. The NDIS workforce is expected to grow from 73,000 full time equivalent jobs in 2013 to around 162,000 jobs by full scheme in 2020. The recently announced NDIS Jobs and Market Fund will help to ensure the disability workforce and market can meet growing demand as the NDIS reaches full scheme. In addition, under the Government’s Boosting the Local Care Workforce program, up to 25 skilled care regional coordinators will be placed in key locations around Australia to engage with local NDIS and aged care providers, build networks and raise awareness of employment opportunities. The NDIS Quality and Safeguards Commission will start operating in New South Wales and South Australia from 1 July this year and in the remaining States and Territories, except Western Australia, in July 2019. It will operate in Western

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Australia from 2020. It will ensure safe, quality support and services are delivered and nationally consistent, responsive and effective regulation of NDIS providers. A full scheme agreement between the Commonwealth and New South Wales Governments delivers certainty to people with disability in NSW and right across the country, that the NDIS is a long term reform that gives them choice and control over the services and support they can access. By July 2018, the scheme will be fully available across New South Wales and South Australia. It will be available across the whole country by July 2020. There has been a lot of focus on mental health in Australian society in recent years. How do you respond to criticism that the NDIS does not sufficiently address mental health issues? Is this an area in which we can improve? About 64,000 people with significant and enduring psychosocial disability will benefit from the NDIS. Nonetheless, it is important to remember that access to the scheme is based on functional day-to-day impairment, not diagnosis. The scheme does not, and was never intended to, replace other government support systems such as mental health services or community-based support or treatment for people living with mental health conditions. We need both an NDIS and a highquality mental health system working in tandem. Work is underway to develop

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tailored pathways to ensure the NDIA has the right response for all participants, including people with psychosocial disability, children, people from Aboriginal and Torres Strait Islander communities, those from culturally and linguisticallydiverse backgrounds and people with more complex needs. Some of

Work is underway to develop tailored pathways to ensure the NDIA has the right response for all participants, including people with psychosocial disability, children‌ and people with more complex needs. the practical approaches to better support people include more faceto-face planning, participants having a consistent point of contact at the NDIA, and people seeing their plans before they’re finalised so any concerns or issues can be addressed. The Government and Flinders University have developed a guide, Accessing the NDIS, to help people with psychosocial disability access the scheme. The guide provides practical advice based on providers’ own experiences and helps simplify NDIS requirements such as explaining how clients can test their eligibility and meet NDIS criteria.

Accessing the NDIS can be found at www.dss.gov.au/our-responsibilities/ mental-health/publications-articles. Regular consultation with Commonwealth community-based mental health providers also reveals a strong need to help disability services navigate the NDIS so they can guide people with psychosocial disability through the access process. In May 2017, the Australian Government announced $80 million for a new psychosocial support service for people who are not NDIS participants. The NDIA also has a number of initiatives in place, including establishing a dedicated National Mental Health Team with specific skills relating to psychosocial disability. The Department of Social Services funds Family Mental Health Support Services, which provides early intervention for children and young people up to the age of 18 showing early signs of mental illness or at risk of developing mental illness. There are 52 providers delivering this support at 100 sites across Australia. If you look five years from now, how would you like to see the NDIS and the role it is playing in Australian society? Five years from now, the NDIS will be a decade old and available in all Australian States and Territories, giving people with disability more choice and control to get the support they need. The disability support workforce will grow by more than 80,000 people, significantly expanding the

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NEW TO THE NDIS? To find out more please call 02 6283 3218 or email membership@nds.org.au

As Australia’s peak body for disability service providers, NDS is the only organisation that supports the full spectrum of providers across Australia. Whether you’re a small business or large multi-service organisation, NDS is here to support you to understand – and make the most of – the NDIS.

AS AN NDS MEMBER, YOU WILL: • Access the latest information & analysis from our specialised teams – including NDIS Quality and Safeguards • Gain a greater ability to influence change • Network and share experiences with other providers • Gain access to practical resources to support your organisation

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disability services network across Australia, particularly in regional and rural areas. The Scheme will adapt and grow as lessons are learnt and advances are made in areas such as technology. The Quality and Safeguards Commission will be operating across the country, working with the sector to promote safe, quality services, prevent harm, resolve problems and identify areas for improvement. For providers, the Commission’s single registration and regulatory system will reduce duplication and inconsistency. I believe that the scheme will truly allow its participants greater choice and control, which will enable them to be fully integrated into all aspects of society and open up employment opportunities. Enhancing employment opportunities for people living with disability is a key area of activity. Can you outline some initiatives the Government has taken in this area? From 1 July this year, Australians with disability will be better supported in their search for a job. The Government is investing more than $3 billion into the Disability Employment Services program over four years, including an extra $300 million over the next 10 years. The number of service providers will increase from 117 to 137 and the number of provider sites across Australia will increase from about 2,000 to about 5,000. People with disability will be free to choose their provider – one that works best for them. They can, if they wish, change provider up to five times over the next two years.

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Providers will be given greater financial incentives to place people facing the greatest challenges in longer-term jobs. We continue to build employer awareness of government support services and the social and economic benefits of hiring people with disability. The JobAccess website, www.JobAccess.gov.au, has helpful information for employers, people with disability and service providers. Last December the Government released its discussion paper on supported employment, Ensuring A Strong Future For Supported Employment. What were some of the most important points in that paper? Australian Disability Enterprises play an important role in providing supported employment for 20,000 people with disability. The government’s discussion paper, Ensuring a Strong Future for Supported Employment, continued consultation with the sector, including Australian Disability Enterprises, peak bodies, those that advocate for people with disability, and supported employees, to hear their views on future policies for supported employment. The discussion paper detailed the changing landscape and invited views to help people affected prepare and adjust to a new and better model. Funding will gradually transition to the NDIS to give people with permanent and significant disability more choice and control over how they wish to be supported into employment. We are investing in a range of measures during the transition to

enhance the viability of Australian Disability Enterprises and stability for employees with disability and their families. Carers play a critical role in many situations and they are continuing to receive more recognition. How is the government responding to the need to offer carers more support? While caregiving can be fulfilling, there can be challenges such as maintaining work or study and physical and emotional wellbeing. Getting help early can make a big difference. That is why we are investing an extra $85.6 million over four years to introduce a range of tailored services to ensure carers get the support they need before reaching crisis point. New services will roll out in two stages starting this year. From October 2018, carers can start to access online services such as peer support, counselling, coaching and educational resources through the Carer Gateway website at www. carergateway.gov.au From September 2019, the Government will establish a network of Regional Delivery Partners, providing carers with access to new and improved local services such as information and advice, needs assessments, targeted financial support, tailored counselling and coaching, and crisis support where required. They are the biggest reform for carers in over a decade. Carers and the sector will continue to be involved in this work. Their advice will be critical in making sure the services produce the best outcomes for carers. n

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NDIA NEWS

NDIA NEWS NDIS CONTINUES TO ROLL OUT IN ADELAIDE

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outh Australians aged 18 to 64 years living in the Adelaide Hills, Western Adelaide and Eastern Adelaide regions joined the National Disability Insurance Scheme (NDIS) on 1 April 2018. At the time, Assistant Minister for Disability Services, Jane Prentice, said the roll-out of the NDIS in the three new South Australian regions was an important milestone for people with disability, their families, carers and the broader local community. According to the National Disability Insurance Agency (NDIA) Market Position Statement for South Australia, the number of people receiving disability support in the Adelaide Hills, Western Adelaide and Eastern Adelaide is forecast to grow from 4,500 to 7,500 by 2019. “The NDIS will also create more than 800 jobs locally and generate local investment which will ensure people with disability have the assistance they need to help them achieve their goals and participate in their local communities,” Prentice said.

WESTERN AUSTRALIA TO JOIN NDIS IN JULY

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n 1 July 2018, the NDIA assumed responsibility for the delivery of the NDIS in Western Australia. This comes after the Australian and Western Australian governments reached agreement to bring Western Australia into the NDIS in December 2017. The agreement replaces the agreement signed in January 2017 by the previous Western Australian Government for a WAadministered NDIS.

EMBRACING CULTURAL AND LINGUISTIC DIVERSITY

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he NDIA has announced its strategy to ensure those with disability from linguistically and culturally diverse backgrounds can access the NDIS. Building connections and positive relationships with culturally and linguistically diverse (CALD) communities, increasing cultural competency with the NDIA and its partners, and expanding choice and control are among the priority areas for the strategy. Those with a CALD background have been included in the strategy’s development.

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160,000 AUSTRALIANS NOW BENEFITING FROM THE NDIS

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ore than 160,000 Australians are now benefiting from the NDIS as the life-changing reform continues to roll out across the country. The latest NDIS Quarterly Report for the period 31 December 2017 to 31 March 2018 showed that more than one quarter of the 160,000 participants are receiving support for the first time. Of this number, 151,970 people had an approved plan and 10,253 children had been referred through the Early Childhood Early Intervention (ECEI) approach. NDIA CEO Robert De Luca said, “These figures show that under the NDIS, more Australians with disability are receiving better and more effective support and assistance than ever before.”

MORE SUPPORT FOR PEOPLE WITH DISABILITY IN THE NORTHERN TERRITORY

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arwin, Litchfield and Palmerston residents with disability are set to receive additional services, thanks to $14.8 million in funding from the federal government. The funding will assist Early Childhood Early Intervention services (ECEI) and Local Area Coordination services (LAC) for the NDIS. The services will help children and people with disability access quality services and reach their potential. More than 6,500 people in the Northern Territory are predicted to be supported by the NDIS when it is fully implemented in 2020.

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NDIA NEWS

CONGRATULATIONS TO GOLD MEDALLIST JAIMI DANN

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undaberg National Disability Insurance Scheme (NDIS) participant Jaimi Dann took home two gold medals for ten-pin bowling in the Special Olympics, held in Adelaide in April. Dann’s mum Raelene Whalley said competing in the games was life-changing for 27-year-old Jaimi, who won gold in the singles and in the teams. “We never imagined the extent of Jaimi’s abilities,” she said. “Now we are just waiting to see if Jaimi will be selected for the world games in Abu Dhabi. “When Jaimi was chosen for the Special Olympics, back in 2014, we were really surprised and really happy. We never expected him to come home with two gold and one silver medal,” Whalley continued. “Since then, and since Jaimi has been part of the NDIS, we’ve seen so much personal growth in him. He has been able to see different parts of Australia and he just loves meeting new people.” Whalley said being an NDIS participant had resulted in a positive difference to other aspects of her son’s life. “Jaimi’s local provider, Impact, has been wonderful. With the introduction of the NDIS, it changed its entire program and now he gets to choose what he would like to do from a menu of activities,” she said.

HOW TO MAKE YOUR PLAN WORK FOR YOU

NDIS CONTACT CENTRE PHONE HOURS

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he operating hours of the NDIS phone line changed as of 30 April 2018. The 1800 800 110 phone number will be answered between 8am and 8pm local time. The decision to reduce the operating hours was made after a review found less than 1% of incoming calls were made after 8pm. If you require a free-of-charge translator, interpreter or other assistance, phone 1800 800 110. If you are a Text Telephone (TTY) user, phone 1800 555 677 then ask for 1800 800 110. If you are a Speak and Listen (speech-to-speech relay) user, phone 1800 555 727 then ask for 1800 800 110. If you are an internet relay user, visit the National Relay Service website (external) and ask for 1800 800 110.

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nce you have been given an approved NDIS plan, you are then able to start working towards realising your goals. Help with implementing your plan is available via your Local Area Coordinator or Support Coordinator, if you have one funded in your plan. They can help with registering with MyGov and activating your myplace account, connecting with other community and government services, ensuring service agreements and bookings have been made with providers, as well as helping you find providers who will help you achieve your goals and meet your needs.

REGISTRATION CHANGES FOR NSW AND SA PROVIDERS

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s part of the new NDIS Quality and Safeguards Commission, NSW and South Australian providers will see changes to registration processes commence from July 1 2018. Existing registration details for NSW and SA will automatically transfer from the NDIA to the NDIS Commission from 1 July 2018. Only completed registration applications that have been approved by the NDIA before this date will be transferred and recognised. Providers that are in the process of applying for registrations in NSW or SA should complete all their registration requirements as soon as possible, to allow time for the NDIA to finalise requests. If applications are not completed or approved, a new registration application with the NDIS Commission will need to be made.

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Aftercare

Australia’s longest serving mental health service organisation • A specialist in psychosocial support services • Aftercare offers services for both carers and individuals - community based outreach services - integrated services offering clinical supports - residential services • Serving individuals, carers and families for over 110 years Aftercare is a registered NDIS service provider. We have been working with the National Disability Insurance Scheme (NDIS) since 2015 as a trial site provider.

To access services or make a referral Freecall: 1300 00 1907 www.aftercare.com.au

NDIS Registered Provider

Aftercare

Journeys to emotional wellbeing since 1907


Q&A WITH

ROB DE LUCA

CEO, NATIONAL DISABILITY INSURANCE AGENCY (NDIA)

As the NDIA CEO, Rob De Luca is overseeing the most significant economic and social reform since the introduction of Medicare in the 1970s. Rob De Luca assumed the mantle of CEO of the National Disability Insurance Agency (NDIA) in August 2017. An independent statutory agency, the NDIA is responsible for delivering the National Disability Insurance Scheme (NDIS). De Luca has had a distinguished career, most recently as the Managing Director of Bankwest from 2012 to 2017. He has also been the Executive General Manager, Corporate Financial Services at Commonwealth Bank of Australia, and Chief Executive Officer of ASB Group Investment in New Zealand. As the NDIA CEO, De Luca is

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overseeing the most significant economic and social reform since the introduction of Medicare in the 1970s. Moreover, the Productivity Commission’s 2011 report found the NDIS would ultimately add 1% to Australia’s gross domestic product. This boost will potentially provide a significant shot in the arm to the Australian economy. Equally, it is anticipated the NDIS will provide significant workforce growth opportunities across Australia, with a predicted 88,000 new jobs to be created as the demand for disability services grows. Against this backdrop, the NDIA chief has generously agreed to share his thoughts with National Disability OUTLOOK about the benefits of the NDIS (also called the ‘Scheme’) for participants, providers, families and carers, and the economy. De Luca also addresses his agency’s reaction to the Independent Pricing Review produced by consulting firm McKinsey & Company, the Pathways Review and the achievements of the Scheme over the last year. You’ve been in the role of CEO since August. What do you believe are the major benefits of the NDIS to participants, providers, families and carers, and the economy? It is a privilege to lead the NDIA as we deliver a Scheme that will empower people with disability to live more independently in inclusive communities and workplaces. The NDIS revolutionises how disability supports are provided in Australia, so that they are person-centred,

and account for the fact that disability may enter any of our lives at any stage. It will also make our communities more accessible and inclusive for all. For people with disability, their families and carers, the NDIS means greater independence and empowerment to achieve their goals. NDIS participants have choice and control over the services they engage, and the Scheme’s insurance principles aim to help people build capacity early, so they are able to live more independently over their lifetime. The Scheme also invests in making our communities more inclusive for all people with disability through Information, Linkages and Capacity building (ILC). ILC will connect people with disability with networks and formal and informal supports in more accessible communities. For providers and our economy, this new model means the disability support market can grow, modernise and mature. Under the NDIS, the market’s growth is driven by what people with disability need to achieve their goals. With an increase from $8 billion per year to $22 billion per year investment in the sector, the NDIS will be a major contributor to jobs and business growth in Australia in the years to come. The NDIS is a fantastic opportunity for all Australians to provide better outcomes for people with disability, change our communities’ attitudes to be more inclusive, and for disability support providers to play a role in the sector’s significant, long-term contribution to the Australian economy.

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WFPHA

The Independent Pricing Review has 25 recommendations related to markets, pricing and interventions – all supported in principle by the NDIA Board. What progress have you made in implementing these recommendations? Do you have a timeline for implementation? Earlier this year, the NDIA Board accepted in principle all 25 recommendations of the Independent Pricing Review (IPR). Work is currently underway to identify how we can best implement those recommendations. This includes extensive engagement with providers and peak bodies to best understand how any changes will provide support to providers and the growing disability services market. The NDIA’s response

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to the IPR, including a proposed timeline for implementing the IPR recommendations, is available on the NDIS website. Our initial focus is on making adjustments that have the most significant immediate impact. We’re working to implement those immediate recommendations as part of the FY2018-19 Annual Price Review. Those adjustments are around things such as regional travel support for providers, short-term accommodation pricing, cancellation policies and pricing for preparation of reports requested by the NDIS. Implementation of recommendations relating to market monitoring and engagement has already commenced or will begin soon. We also want to make sure all

pricing adjustments work in parallel with improvements being made through the pathways review. We will work to implement the remaining IPR recommendations and align them with the pathways updates over the short to medium term. This will make sure we are delivering effective, timely and practical improvements to the NDIS experience, while minimising the impact of any changes. The Pathways Review addresses some communications issues. How is the pilot addressing these issues and can you tell us about the results and outcomes since December? The NDIA is committed to ensuring participants have a consistent and inclusive experience when accessing information about the NDIS. We strive for constant improvement of our communications products and engagement to ensure people can access information about the NDIS, and the Scheme itself. In addition to our business-asusual work to constantly improve our communications, increased accessibility is a core component of the new pathways. The pilot of the new participant pathways has been focused on face-to-face planning, improved communications and simpler plans. All participants in the pilot sites are offered the opportunity to have face-to-face pre-planning discussions to make sure people feel ready to develop a plan. Others are still able to choose alternative planning methods, such as Skype or over-thephone planning. Early feedback from participants, their families and staff involved in the pilot has been positive. The NDIA surveyed a range of participants

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WFPHA

and carers in pilot sites. Of those surveyed: • 94% of participants said the person from NDIS understood how their disability affected their life • 89% of families/carers said the person from NDIS understood how the participant’s disability affected them as a family member/carer • 92% of participants said that decisions regarding their plan were clearly explained

This represents a 68% increase in participant numbers since 30 June 2017. The number of businesses registering to provide supports to NDIS participants also continues to grow rapidly. As at 31 March 2018 there were 14,271 service providers registered with the NDIS. 43% of these providers are sole traders, and last quarter there was

We are also developing tailored enhancements to the pathways to support participants with more specific needs, such as those from particular social, geographic or cultural groups. In late 2017 through 2018, we have held consultation sessions with over a thousand participants and other key stakeholders to make sure the NDIA supports the specific and unique needs of people from a variety of groups and backgrounds during the planning process. This engagement will help us develop approaches, resources and communication products that better meet the needs of our participants.

This model also reflects the fact that one in five Australians will have a disability at some point in their lifetime – we need a vibrant market of supports that reflects this demand, and the diversity of human goals and needs.

What other successes/changes have you and your organisation achieved over the past eight months? The last eight months has been a period of continued growth and improvement for the Scheme and Agency. We have celebrated several rollout milestones and welcomed people with disability into the Scheme – many of whom have never received disability supports before. As at 31 March 2018, there were 151,970 NDIS participants across the country.

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a growth of 19% in the number of active providers. This growth in recent months indicates Australian businesses are taking advantage of the great opportunities the NDIS presents for our economy. In May, the federal government announced $56 million in funding through the NDIA for ILC building in the Australian Capital Territory, New South Wales and South Australia. ILC is about making our communities more inclusive and accessible, and this funding will help communities empower and connect all people with disability to the right services and networks for them.

This year, we have also turned our attention to the Agency itself, to make sure we are well-placed to deliver a world-class NDIS. My colleagues across the Agency and Partners in the Community contributed to a process to refresh our Agency values, and we are continuously improving our processes and training so that we deliver a quality NDIS. I am excited for further work we are doing to make sure our Agency is positioned to deliver on these values every day. In December 2017, we welcomed Western Australia into the national Scheme, when the Western Australia and Commonwealth commonwealth governments signed the Bilateral Agreement for transition to the NDIS in WA. This means we are able to deliver a truly national NDIS. In 2017 the NDIA also won the Australian Public Service Diversity and Gender Equality award. This award recognises the NDIA’s commitment to building a workforce that reflects the diversity of the community we serve and ensuring everyone is acknowledged and supported in their roles. We strive to be a model employer for people with disability, and to be a workplace that celebrates the value our staff from all backgrounds [can] bring to delivering the NDIS. Finally, the Productivity Commission confirmed that NDIS costs are on track. The NDIA has come in under budget every financial year since Scheme inception, and we are actively monitoring and addressing pressures as they emerge.

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Recently, there have been some reports that disability advocates are worried about the gig economy and how it could undermine the quality of the national disability network. They say the move towards short-term employment is opening more avenues for unregulated and unqualified disability service providers. Is this a worry for you and what checks are in place? The NDIS is a new way of providing supports that puts people with disability at the centre of the market, and empowers them to choose their own goals and the services they want to engage to achieve them. The disability sector will inevitably grow and mature to cater to this new type of market, where the support needs and goals of people with disability determine demand. By the time the NDIS has rolled

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out, the disability sector will have grown from $8 billion a year to $22 billion a year in 2020. The NDIS will account for one in five new jobs over the next 10 years, or up to 165,000 full-time equivalent jobs at full scheme. Providers will grow and adapt to this opportunity for growth, and the empowerment of people with disability as informed consumers. The NDIA is working on a range of initiatives to ensure the market is able to meet participants’ needs through this period of rapid growth, including activities to ensure consistent service standards across industries. In 2017, the NDIA published the NDIS Guide to Suitability so that providers understand their quality, safeguards and compliance obligations as providers of supports funded through the NDIS. This guide makes clear that certain supports must be provided by people with specific qualifications

With the introduction of the NDIS Quality and Safeguards Commission this year, the market will be consistently, nationally regulated and monitored. and experience; these supports are priced accordingly and include expectations about outcomes. During transition, providers of NDIS supports are required to comply with existing commonwealth, state and territory standards and legislation. All providers need to manage their own compliance obligations and ensure they meet or exceed the relevant requirements specified to each jurisdiction. With the introduction of the NDIS Quality and Safeguards Commission this year, the market will be consistently, nationally regulated

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and monitored. These are positive changes to the disability services market in Australia. They represent a shift in how our society views disability. Under this new model, people with disability and their families and carers are active consumers with increased independence and control over their supports. This model also reflects the fact that one in five Australians will have a disability at some point in their lifetime – we need a vibrant market of supports that reflects this demand, and the diversity of human goals and needs.n

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R E G I S T R AT I O N

UNDERSTANDING THE NDIS PROVIDER REGISTRATION PROCESS

We look at the process of becoming an NDIS provider – and how to make it as smooth as possible. By Anthony O’Brien.

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he number of providers registering to deliver services under the National Disability Insurance Scheme (NDIS) is growing at a rapid rate. At 31 March 2018, 14,271 service providers were approved to deliver disability supports, an increase of 64 per cent from 30 June 2017 according to National Disability Insurance Agency (NDIA) This growth is especially noteworthy given the federal government’s commitment in the May 2018 Federal Budget to fully fund the Scheme. NDIA CEO Robert De Luca says, “These figures demonstrate the pace and successful progress of the

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NDIS, which will ultimately deliver reasonable and necessary supports to Australians with disability to help them achieve their goals and increase their economic and social participation.” Moreover, it appears the speed of registration is improving, according to Mirta Savin of multi-disciplinary practice All About Kids, located on the Central Coast of NSW. All About Kids provides speech pathology, psychology, art therapy and occupational therapy to children. Savin says the registration process including Provider Digital Access (PRODA) and myplace applications for All About Kids took about four weeks

and was finalised in December 2017. Despite the rapid registration of All About Kids, Savin says there were a few speed bumps to negotiate along the way. Savin purchased All About Kids from Jennifer Francis in 2017, who had registered the business for the NDIS. However, with the change of ownership, Savin had to use a new Australian Business Number (ABN), which required her to reregister All About Kids as an NDIS provider. This additional bureaucratic hoop seemed unnecessary to the experienced speech therapist, who had previously started the process of registering her former business Avoca Beach Speech Pathology for the NDIS. Savin explains, “While we put a hold on registering the former business for the NDIS, there were times when I found the registration process to be dynamic, with the requirements and advice for providers changing regularly.”

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R E G I S T R AT I O N

Every person working for a provider organisation seeking myplace access will need their own PRODA account to access the portal. WHAT IS INVOLVED IN THE NDIS REGISTRATION PROCESS For those providers still considering registering for the NDIS, there’s no escaping the paperwork. In fact, one provider who prefers to maintain his anonymity says despite the boost the NDIS would undoubtedly deliver to his business, the red tape involved in registering, plus the ongoing administration, isn’t worth the extra bucks. Savin argues that she has seen a significant increase in referrals of clients with disability through NDIS. Consequently, All About Kids is seeking an occupational therapist and clinical psychologist to join the business.

There are several stages in registering to become an NDIS provider. Registration includes applying for a Provider Digital Access (PRODA) account and then using the PRODA account to apply for the myplace provider portal. The registering provider must then complete an Intent to Register application which involves selecting registration groups and nominating the professions, together with the relevant professional qualifications of the staff set to deliver the various services and supports. To complete the registration process, a provider must deliver the

requisite documentation, including a signed Declaration of Suitability.

APPLYING FOR A PRODA ACCOUNT PRODA is an online authentication system that provides secure access to the “myplace” NDIS provider portal. An organisation must first register for a PRODA account to enable access to myplace. To register for a PRODA account, an applicant must create an account profile that involves providing personal identity details, including a personal email address. A shared email address will not suffice. To find out about applying for a PRODA account, visit the NDIS website at ndis.gov.au, and search for the Provider Toolkit. Alternatively, contact 1800 800 110 and follow the voice prompts for PRODA for additional assistance. By and large, Savin found the PRODA process relatively seamless.

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R E G I S T R AT I O N

Although she registered for PRODA previously for other funding purposes for Avoca Beach Speech Pathology. “This earlier PRODA registration did seem to create some confusion when it came to the NDIS,” Savin adds.

REGISTERING FOR MYPLACE Myplace is the NDIS information and communications technology provider portal. To access myplace, you will first need a PRODA account as outlined above. It is important to note that only the nominated primary contacts within your organisation can be the main administrators for a PRODA account. The primary contacts can consequently authorise applications from other members of a provider organisation for a myplace account or to be linked to a provider’s account. That said, every person working for a provider organisation seeking myplace access will need their own PRODA account to

access the portal, according to the NDIS website. Crucially, the myplace portal enables providers to undertake the steps required to apply for registration with the NDIS. In turn, applicants can review their registration details including the “registration groups” they can provide to, or are still pending confirmation by the NDIS. A registration group is a package of supports that a provider must be authorised to deliver. There are over 20 registration groups, and they relate to the ‘nature’ of the support delivered, according to the Early Childhood Intervention Australia website. Once a provider is registered, it can use myplace to create and approve service bookings with participants, lodge payment requests for supports and services provided to participants, view payment requests and manage organisational details. The portal

can also be utilised to communicate online with participants and the NDIA, upload information on third-party verification and other information regarding registration, as well as any responses to a request for quote. All About Kids’ Savin had issues applying for myplace that may have been linked to her previous PRODA registration. That said, the speech therapist found that when she hit speed bumps with either her PRODA or myplace applications, emailing the NDIS for help rather than using telephone assistance delivered more rapid assistance. Savin explains, “I found the level of expertise of the NDIS operatives on the end of some phone calls to be variable. “That said, given the sophistication of the NDIS registration, I also appreciated those occasions when I did speak to someone who knew what they

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R E G I S T R AT I O N

were talking about. That’s also why email is good because it gives you a paper trail.”

COMPLETE AN INTENT TO REGISTER APPLICATION ON MYPLACE For new providers seeking to apply to register for the NDIS, an Intent to Register application on myplace must be completed. The Intent to Register requires details about the applicant organisation, including: • Whether it’s a private company, sole trader or other legal business entity • Its legal business name • Its trading name (if relevant) • Its ABN • Whether the provider or parent company is a not-for-profit entity • The applicant’s address details • A registered provider must have a valid ABN. To check whether a provider is entitled to an ABN, visit the Australian Business Register at abr.gov.au

COMPLETING YOUR REGISTRATION Once an organisation has myplace access, it can update its profile to complete the final steps in the registration process. This includes selecting the registration group(s) it will support and service, and the nominating profession(s). Applicants must also upload all relevant supporting information including a signed Declaration of Suitability and proof of compliance with the quality and safeguard arrangements in the states and territories where the provider plans to operate. Other evidence required to support a provider’s NDIS registration include descriptions of the registration groups, the professions necessary to deliver them, and other evidence of experience. For some categories of supports, namely “specialist disability

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Providers cannot offer, or deliver, services until they receive from the NDIA approval of the registration groups. This confirmation is provided on the myplace portal and via a letter Certificate. supports”, including Daily Tasks Shared Living, state and territory certification is required that assures quality and safeguards arrangements. For a provider with state or territory accreditation, proof of compliance will be issued by the state or territory or authorised thirdparty provider.

CERTIFICATE OF PROVIDER REGISTRATION Once a provider has achieved NDIS registration, it will receive a Certificate of Provider Registration. This cork-popping milestone means a provider is eligible to engage with participants and start to offer the services and supports. A word of warning though – providers cannot offer, or deliver, services until they receive from the NDIA approval of the registration groups. This confirmation is provided on the myplace portal and via a letter Certificate. Interestingly, Savin was not aware she had received a Certificate of Provider Registration, and only discovered she had successfully listed for the NDIS by means of the message inbox of her PRODA account.

WHAT DOES PENDING STATE APPROVAL MEAN? If an application is assessed as Pending State Approval by the NDIA Provider Registration Team, a provider will need to follow the requirements of the state or territory where it plans to function. The NDIS Pending State Approval webpage (www.ndis.gov.au/providers/ psa.html) outlines the steps required by a provider to obtain state approval. Once state or territory approval is

granted, providers must submit evidence of this endorsement using their myplace accounts.

EXPECTED TIMEFRAMES FOR REGISTRATION Generally, a carefully completed provider application is assessed, and notification given within 10–12 business days, according to the NDIS website. In times of high volume, assessment and notification may take up to 30 days. To ensure NDIS registration is approved rapidly, the NDIA advises applicants to provide all the required documentation at the time of the initial submission. If the NDIA is forced to chase up a provider for additional information, the wheels on the approval wagon will slacken off. Also, processing times for provider registration are dependent on the category of the registration group being applied for, advises the NDIS website: “For some registration groups, processing is dependent on quality and safeguards requirements in a jurisdiction.” Moreover, if 30 business days have clocked by and additional documentation has not been requested, contact the NDIS on 1800 800 110 to find out how your registration application is progressing. n If you’re considering registering your organisation as an NDIS provider, be sure to check the Provider Toolkit at https://providertoolkit.ndis.gov.au/32registration-process

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PLAN MANAGEMENT

UNDERSTANDING NDIS PLAN MANAGEMENT What options do NDIS participants have for creating and managing their plans? National Disability OUTLOOK explains the choices available. By Anthony O’Brien.

A

ustralia’s National Disability Insurance Scheme (NDIS) is transforming the provision of support to about 460,000 Australians under the age of 65 with a disability through the creation of individualised plans that aim to help them live an ordinary life. “The NDIS is providing more choice and control to Australians with disability, and we must encourage everyone to fully participate in community life, education and work,” said the Hon. Dan Tehan, MP, Minister for Social Services. The National Disability Insurance Agency (NDIA) aims to have the scheme fully implemented nationwide by 2020 when it is expected to provide supports to 475,000 people with permanent and significant disability, at a cost of $22 billion.

WHAT IS INCLUDED IN AN NDIS PLAN? Central to a participant’s NDIS plan is the setting of goals relating to, for instance, independence, community involvement, employment or wellbeing. The NDIS provides funding for supports in a plan if it deems them to be “reasonable and

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PLAN MANAGEMENT

necessary” for helping the participant achieve goals. The types of supports the NDIS may fund for participants include daily personal activities, transport to community, social, economic and other daily activities, employment support, therapeutic supports, household assistance, home modifications, mobility equipment and vehicle modifications. There is no cap on funding for supports in an NDIS plan, and funding decisions are made on a case-by-case basis according to what is appropriate for the individual.

CREATING A PLAN The NDIA has engaged partner agencies in the community to offer information to people with disability about their options and help them create an NDIS plan. For many participants, it will be a community organisation known as a Local Area Coordinator (LAC) that provides these services. For parents of children with disability, it is likely to be one of the NDIA’s Early Childhood Partners, which are experienced in early childhood intervention.

IMPLEMENTING THE PLAN Previously, disability support providers received block grants of funding from the government to finance the services for a person with disability. Now, the NDIS determines the amount of money the participant will be allocated to pay for supports in their plan. The participant gets a certain amount of flexibility in deciding the proportion of their NDIS funds that will be spent on the different types of supports in their plan, and they get to choose their providers. These plans are updated annually.

MANAGING THE NDIS PAPERWORK Along with how and where their NDIS funds are spent, there is another critical decision participants need to make: who will manage the finances

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and the associated accounting paperwork? There are several options, and participants can choose one option or a combination of options, according to a spokesperson from the NDIA. Agency managed If a participant chooses this option, their providers can claim their expenses directly from the NDIA. By

on any support provider they want, whether or not the provider is on the list of registered NDIS providers. Choosing a plan manager A participant can also select a plan manager if they believe managing the paperwork involved in their NDIS plan will be too onerous and time consuming.

The self-managed option has the most paperwork but provides the most flexibility. You directly manage the funds and are responsible for all transactions. selecting the agency-managed choice, most of the paperwork is handled on the participant’s behalf. The rub with choosing the agency-managed option is that the participant can only access services from approved NDIA providers. Self-managed A participant can ask to manage their NDIS funds. The NDIA performs a risk assessment and if the agency is satisfied that the participant has the capability and capacity, it approves them to selfmanage. When the participant receives an invoice for supports in their plan, they can pay it themselves and then be reimbursed by the NDIA into their bank account. Or they can send a claim to the NDIS, which then deposits the money into the participant’s bank account so that they can pay the invoice. This option has the most paperwork but provides the most flexibility. You directly manage the funds and are responsible for all transactions. You may choose to employ support staff directly and do all the financial transactions or pay an organisation of your choice to do this on your behalf. A participant who chooses to selfmanage can use their NDIS funds

If participants use a plan manager, their funding is allocated to a third party to manage their plan’s financial transactions, according to a spokesperson from the NDIA. This support gives participants a helping hand with some of the paperwork, but they are still responsible for the administration of their plan. A plan manager is somewhat like a bookkeeper, explains Andrian Putra from Maple Plan. As a recently launched Victoria-based NDIS plan management provider, Maple Plan is owned and operated by Certified Practising Accountant Andrian Putra and Chartered Accountant Vincent Lay, who have extensive experience working in the disability sector. Putra adds, “The term plan manager can be a little bit misleading for people that are new to NDIS. When people hear the term plan manager, some might assume this person or organisation will write the plan, liaise with LACs and choose services. In reality, a plan manager often receives the plan after it is issued.” Plan managers must be registered with the NDIA, which pays them directly for their services. “In other words, the services provided by a plan manager are not deducted from the existing NDIS funding but rather in addition to a participant’s

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PLAN MANAGEMENT

Unlike a self-managed participant, a planmanaged participant does not have to worry about how to claim invoices, the support categories to select from or record keeping. funding,” Lay explains. Maple Plan is registered as a plan manager in Victoria, New South Wales and Queensland. A plan manager can help develop a service agreement with providers, pay providers and prepare monthly reports about how a participant’s funding is being used. Instead of a participant opening a bank account, the NDIS pays the plan manager directly, who subsequently pays the service provider’s invoices. Putra notes, “A plan manager will ensure all invoices adhere to the NDIA standards prior to making a claim and all documentation is well kept.”

Unlike a self-managed participant, a plan-managed participant does not have to worry about how to claim invoices, the support categories to select from or record keeping. “The plan manager will take care of all this paperwork,” says Putra. “All the participant needs to do is engage with the providers of their choice to get the service that they require. They just need to tell the provider to send the invoice to their plan manager, who will take care of the rest.”

MANAGING COSTS Plan managers are subject to the NDIS price guide, while self-managed

participants may choose to pay above the prescribed price guide. However, if the self-managed participant makes a claim above the price guide, they could easily exhaust their NDIS plan funding well before its allocated period. To illustrate, Abbey is planmanaged and has 120 hours of assistance with self-care only on weekdays for $5,366.40 (120 hours x $44.72). A plan manager such as Maple Plan will pay $44.72 per hour to the service provider on Abbey’s behalf, ensuring she will receive 120 hours of service. In contrast, Lucy is self-managed and has funding for assistance with self-care for weekdays only of $5,366.40 (120 hours x $44.72). Lucy engages a service provider directly, who charges her $65 an hour. This will effectively result in Lucy only receiving 82.56 hours of


PLAN MANAGEMENT

service ($5,366.40 / $65) compared to the full 120 hours Abbey receives for the same amount of funding. Vincent Lay advises that a plan manager could provide a participant with an insight into how much funding is left for each support category, and whether it is core, capital or capacity building. “A plan manager should be in the position to tell participants, okay you’re six months down the path and you have used up 80% of funding for that particular category. This is a budgeting service a plan manager such as Maple Plan can offer to participants,” says Lay. Maple Plan works with the participant from the beginning, explains Putra, and once a provider is chosen “we will also work with a participant to establish a streamlined information flow”. He adds, “This provides peace of mind not only to the participants but also to the

providers knowing that their invoices will be processed and paid.”

IMPROVING FINANCIAL CAPACITY Many people with disability have not been well-supported during their school years. As a result, they may have poor functional literacy skills (and poor computer literacy) which adversely affects their abilityto become financially literate, according to National Disability Services. While plan managers do not offer direct financial training, according to Putra, Maple Plan can assist participants improve their financial management capacity.

REVIEWING THE PLAN NDIS plans generally have a duration of 12 months. Four to six weeks before a plan ends, the NDIA conducts a review to see if the funds

are helping the participant achieve their goals, and whether the plan is still relevant to their needs or should be amended. Outside of this regular annual review process, changes cannot be made to a plan. However, participants can request the NDIA to review their plan and replace it with a new one. If you have a plan manager, be sure to include these NDIS experts in the review process. n

For more information on NDIS plan management, visit www.ndis. gov.au, phone 1800 800 110 or consult the NDIS website for the addresses of NDIS and LAC offices around the country. Alternatively, you can contact Maple Plan. Visit www.mapleplan.com.au, email info@mapleplan.com.au or phone 03 9512 6700.

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SUPPORT

SUPPORT COORDINATION FOR THOSE WHO NEED ADDITIONAL ASSISTANCE The Coordination of Supports role was created as part of the NDIS to assist participants with higher needs, and to transition them into managing their own plans independently. By Anthony O’Brien.

T

he National Disability Insurance Scheme (NDIS) is in full swing across Australia, and consequently NSW disability sector worker, Tanya Darwin, identified an opportunity to open her own business, Ethical Coordination of Supports (ECOS). Based in Budgewoi NSW, ECOS services the Central Coast of NSW and the Hunter region. Taking a leap of faith, the former NSW St Vincent De Paul NDIS Local Area Coordinator felt she could better assist NDIS participants, who had Coordination of Supports funding, to make the most of their plan, offering them a more personalised boutiquestyle service. “I’ve worked in the disability sector long enough to know what works well and what doesn’t,” she says. “That’s why I decided to become a Coordinator of Supports. It’s where my expertise lies, and so far it’s been a perfect fit.” Darwin insists that the NDIS is the most significant social reform Australia has seen, a position that is extremely hard to argue against.

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Perhaps only the passage of the Disability Discrimination Act in 1992 can hold a candle to the NDIS, although this is a matter of opinion. “The NDIS has its teething problems, but it won’t be mature until 2024,” reminds Darwin. “The bumps we are experiencing at this early stage in the rollout are to be expected for such a large social reform. Used well, the NDIS is amazing. I’m a real fan.”

WHAT IS THE ROLE OF A SUPPORT COORDINATOR? As an NDIS registered provider, Darwin helps Coordination of Supports-funded NDIS participants and/or their nominees to understand how their NDIS plan works. “We sit down together and I explain how their funding and budgets work. I also teach them how to use the NDIS online myPlace portal and how to navigate the NDIS marketplace to find suitable providers to help them achieve their goals,” she says. “If they are experiencing any service delivery issues, I help to

address them, along with any social barriers they may face around participating in the community.” Imelda Todd, Operations Manager, Support Coordination, Integra, says support coordination is designed to help participants navigate, learn and understand more about the NDIS. Established in 2012, Integra provides support coordination and plan management services to NDIS participants, their families and carers Australia-wide. “At Integra, we are passionate about people having access to the right tools and providing unbiased support to maximise the possibilities of a participant’s NDIS plan and supports,” she says.

WHAT IS COORDINATION OF SUPPORTS? Darwin explains that Coordination of Supports is a time-bound capacitybuilding support the NDIS may include in a high needs participant’s plan. “It allows them to engage a support coordinator, like me, to support them, and work with them until they feel confident enough to manage their plan independently,” she says. “For example, in a participant’s initial plan, they might get allocated 100 Coordination of Supports hours. Then in their next plan, the funding reduces because they don’t need as much help from me. I’ve shown

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them how to do it, and they feel more confident in managing it. Then in each subsequent plan, the funding reduces until the participant and/or their nominee can execute the plan confidently on their own. “It’s a bit of a support coordinator’s rule of thumb; if you do your job well, you do yourself out of a job,” says Darwin. While Coordination of Supports funding isn’t available to every

participant, Darwin suggests that if NDIS recipients feel overwhelmed and feel that their needs are high, it is worthwhile asking about whether it could be included in their plan. Support coordination is a capacity-building support to implement all supports in a participant’s plan, including informal, mainstream, community and funded supports. Support coordination is included in a participant’s plan if it is

WHAT IS SUPPORT COORDINATION? The National Disability Insurance Agency (NDIA) defines support coordination as primarily being “Assistance to strengthen participant’s abilities to coordinate and implement supports and participate more fully in the community. It can include initial assistance with linking participants with the right providers to meet their needs, assistance to source providers, coordinating a range of supports both funded and mainstream and building on informal supports, resolving points of crisis, parenting training and developing participant resilience in their own network and community.”

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SUPPORT

While Coordination of Supports funding isn’t available to every participant, if NDIS recipients feel overwhelmed and feel that their needs are high, it is worthwhile asking about whether it could be included in their plan. reasonable and necessary for the individual. Moreover, support coordination must be included as a funded item within a participant’s plan. At the end of the day, the services of the support coordinator are paid for, or claimed through, the NDIS.

SUPPORT FOR PARTICIPANTS Support coordination involves helping NDIS participants get their supports up and running and operating helpfully. This assistance includes informal, mainstream and community supports,

HUNTER

Insurance Agency (NDIA) with reports on outcomes and success indicators within the agreed reporting frequency • Building a participant’s capacity to make the most of the flexibility in a plan • Assisting participants to prepare for a plan review

as well as funded supports. Specifically, this might involve helping a participant with the following assistance: • Coordinating supports and participating in their community • Finding and securing specialist disability accommodation • Making sure services such as housing, education, justice and health are involved if required • Supporting participants to achieve greater independence to self-direct services and supports in the longer term • Providing the National Disability

WHERE THE SERVICES OF AN LAC END AND SUPPORT COORDINATION BEGINS Where there are no NDIS Partner Local Area Coordinator (LAC) services in place, the NDIA may fund additional supports such as support coordination in a plan until LAC services come on board in a region. When the LAC services are in place, it is expected most participants will transition to work directly with LACs to connect to supports and review their plan. Where extra support is required beyond the scope provided by an LAC, support

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PARTICIPANT RATING

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SUPPORT

coordination may be included in a participant’s plan. Darwin explains the decision to provide support coordination over and above an LAC service depends on a participant’s complexity. “A person’s complexity is decided by reviewing a combination of factors including their disability, the severity and how it impacts their daily life,” she says. “If a participant is considered complex, they will be offered support coordination. If the participant presents with less complexity, he or she will be offered the assistance of an LAC.” It is also worth noting that a support coordinator cannot make judgements about the adequacy of a plan and do not make requests for unscheduled plan reviews. They are also not funded to provide participant transport, plan administration, plan management, support rostering, advocacy or disability supports.

Moreover, a support coordinator should not be the provider of any other funded supports in the plan. This is necessary to ensure that there is no conflict of interest. However, in certain circumstances, this condition may be waived, according to the NDIA.

WHO MIGHT BE MORE LIKELY TO NEED THE ASSISTANCE OF A SUPPORT COORDINATOR? If someone is in their first plan and they do not have the assistance of an LAC, it is most likely that support connection and coordination will be funded. A very small percentage of people require Specialist Support Coordination, according to a coordinator who preferred to maintain her anonymity. However, it is generally only funded for a short period of time. The NDIA may consider adding support coordination to a plan if the person could experience challenges

ROLE OF A FUNDED COORDINATOR OF SUPPORTS In relation to the NDIA’s definition of support coordination, the primary role of a support coordinator is to: • Support implementation of all supports in the plan, including informal, mainstream and community, as well as funded supports • Strengthen and enhance the participant’s abilities to coordinate supports and participate in the community • Ensure mainstream services meet their obligations (i.e. housing, education, justice, health) • Build the capacity of the participant to achieve greater independence to self-direct services and supports in the longer term Provide the NDIA with reports on outcomes and success indicators within the agreed reporting frequency

I’d like help to coordinate my supports Integra Support Coordinators are experts at helping you understand your plan, implement it, and find providers, products and services best able to meet your individual needs. As a trusted independent partner you’ll get unbiased support that works to acheive your goals.

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myintegra.com.au Integra is a trading name of Integrated Care Pty Ltd (ABN 62 149 233 634)


SUPPORT

navigating the NDIS or managing their providers efficiently, according to the same coordinator. Support coordinators are normally sent a request for service by a planner on behalf of a participant. The request includes details of what supports the participant requires. If the coordinator accepts the request, a plan handover is arranged with the planner.

HOW DOES A SUPPORT COORDINATOR HELP A PARTICIPANT LINK WITH PROVIDERS? A support coordinator will discuss a participant’s current needs and possible supports that may assist them under the NDIS and in the community. They will have knowledge of locally based supports and providers and can put participants in touch with

those that best suit their needs. A support coordinator can also organise service level agreements and assist participants monitor progress. A participant with ageing parents, for example, might be eligible for support coordination, according to Darwin. “The older parents may not use the internet or a mobile phone or don’t have transport. In this situation, a participant may receive access to a support coordinator. “Likewise, a participant living in a group home may be able to access a support coordinator, if it’s felt he or she has no access to informal support such as family members to help link them into the community or mainstream services.”

CONNECTING WITH A PLAN MANAGER A support coordinator can help participants connect with many different providers, including

plan management providers. Or alternatively, once a participant selects a plan manager, a support coordinator can become involved. A plan manager helps a participant with the financial management of their NDIS budget. This might include: • Paying service providers and processing expense claims for participants • Developing monthly statements for participants ECOS’s Darwin succinctly explains that plan managers are ultimately hired to pay the bills of those service providers supporting the needs of a participant. Moreover, a plan manager is not responsible for negotiating or organising service providers to deliver supports, monitoring delivery or the quality of the supports received. As a support coordinator, Darwin believes her goal is to teach

Bee Cos We Care became an NDIS provider in November 2016 having received 100% in all accreditations. Like many new providers we had the usual teething and technical issues with the portal, but these were resolved, and we can now navigate the portal to ensure we are working client plan and NDIS guidelines.

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Costs were also an issue with the initial hourly NDIS rates (for example Standard need Daily Activities hourly payment rate) only just covering staff costs, this was improved slightly with the July 1 2017 increase but margins are still very tight and we do have to consider each client and package carefully. Clients expectation of what their plan includes is often different to the actual plan and this has been a minefield to navigate. We now discuss this in detail with clients prior to engagement in service to ensure they are aware of the services we can provide under their plan, we will also refer on to other providers for other services such as physio, occupational therapists or technical equipment such as hoists and wheelchairs. Bee Cos We Care have reviewed our NDIS procedures and now feel we have a system in place that ensures clients, staff and the organization are fully supported and prepared. We ensure we are the right fit for a client before commencing service, we are a client focused service and meeting the client needs, working towards their goals ensuring their safety and wellbeing are our main concern. If we don’t feel we can provide the absolute best service for the client, then we won’t take the client on. If you or someone you know would like further information on services we provide please call us on (02) 9450 0333.


SUPPORT

CONTACTS FOR SUPPORT COORDINATION For more information on Ethical Coordination of Supports (ECOS) Website: www. ethicalcoordinationofsupports. com.au Phone: 0422 650 938 For more information on Integra Website: myintegra.com.au Phone: 1300 937 187

participants how to find the correct support service providers whether it is a plan manager, occupational therapist, speech pathologist or support worker. “On the NDIS website, there are some tools on the provider site to help participants to find providers. It’s our job to help them learn how to use these tools,

including the Provider Finder.” A support coordinator can also assist participants to learn how to interview providers and check the service agreements. Darwin explains, “We would teach them what to look for in a service agreement, and what is the rights and responsibilities of the service providers and the participants.” If the services or the agreement do not quite match the circumstances of a participant, a support coordinator can show a participant how to change the service agreement. “Moreover, a participant doesn’t have to sign the service agreement until those changes are made,” confirms Darwin. “It might be that some providers request 28 days’ notification about the cancellation of their services, whereas 14 days is more suitable to a participant.” If a participant has a reasonably

complex intellectual disability and is unable to access the NDIS website or review a provider’s service agreement, a service coordinator will be conscripted in to assist. “In this situation, a support coordinator would access the people who could make decisions on his behalf such as his carers and make decisions based on the information they provide,” Darwin explains. If a participant has no informal supports, a support coordinator will typically continue with the services already in place. “Based on the participant’s goals in his or her NDIS plan, I’d ask the existing providers how they are trying to help a participant meet the participant’s goals and we’d take it from there.” n

For more information about NDIS Support Coordination visit the NDIS website at www.ndis.gov.au or phone 1800 800 110.


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he 2018 Gold Coast Commonwealth Games (2018 GCCC) was a game changer – a completely integrated program of both able-bodied and Paralympic events. Three-time Australian Paralympic gold medallist Kurt Fearnley held up 2018 GCCC as the example and template for how greater inclusion can be achieved in everyday society. “I’ve been put in this position of privilege over the past week that I would never have imagined being in. Let’s have that same conversation about what is happening here at home about our education facilities, about our transport, about employment,” he said. The National Disability Insurance Scheme (NDIS) is likewise a game changer. A once-in-a-generation change in the provision of care for people with disability, it is heralded as the biggest change in healthcare policy since the introduction of Medicare. The NDIS aims to provide people living with disability a flexible, whole-of-life approach to support. It encourages them to engage more fully in their community, pursue life goals and maximise their quality of life. And it gives consumers more control: they have greater choice over the services they receive, including how and with whom they wish to engage. One of the biggest challenges for both consumers and service providers alike is how to best communicate options and narrow these options down to specific choices. Navigating the range of options available can be overwhelmingly daunting to those who have been with just one service provider previously, so one of the goals of the NDIS is that people with disability become connected and have the information they need to make these decisions and choices. For people with physical or intellectual disability to live an ordinary life, there is a complex network of inter-related products and services that needs to be coordinated. For many people, including families and carers, the process of making informed choices can be difficult to understand,

Kurt Fearnley wins marathon gold

navigate and negotiate, especially if there are other barriers such as low level of literacy or for those of non-English speaking backgrounds. Experience from early roll-out sites has shown that the uptake of NDIS plans can be delayed due to the individual’s lack of preparedness to understand and enact the plans. “I know from personal experience that navigating the NDIS is a very complex task,” says Kathryn Carey, Senior Consultant at 4community. “We have found it very difficult as a family to understand and enact the changes that have come with the NDIS on behalf of my sister-in-law who requires 24/7 care. Having the right information was key for us to navigate our way through it. “We are two years into the process and are still unclear about what the right choices are for her care. It’s not something you do once and forget – it requires ongoing management and attention. In some instances we have found the support she requires just does not exist yet, or there is insufficient capacity in the system at this stage.” In a recent survey by 4community, it was found that community expos give people living with disability, as well as

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Photo: Courtesy of ABC News

ENABLING REAL CHOICE FOR PEOPLE LIVING WITH DISABILITY

their families and carers, quality face-toface time with service providers and a range of government agencies and advocacy groups. It was seen as one of the preferred methods for gathering information. “It’s good to have so many services in one spot – good information sharing… and a timesaver rather than looking up each service on the internet,” said one attendee of the Nepean Disability Expo, held in Western Sydney in 2016. A clear win-win, expos also give service providers a cost-effective way of reaching their local audience. They can discuss the unique situations of each person face to face, provide examples of how best to meet individual goals and aspirations, and give advice on how to get the most from private or government funding. Ninety per cent of people attending expos indicated that they would attend again. Most importantly, attendees gave the experience of attending an expo a rating of 4.41 out of 5 when asked the question, “Do you feel the information provided to you at the Expo will assist you with your ongoing care needs?” “That’s the ultimate test,” says 4community’s Carey. “It’s about positively impacting people with a disability, to not only help them navigate what choice means, but for it to make a difference.” Minister for Disability Services Ray Williams said of the 2017 South West Disability Expo (an initiative of 4community), “People with a disability are our community, they deserve to live in their community. We need expos like this one to bring that to fruition.” n


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Let’s get started today! Call us on 1300 080 856 Visit our website atworkaustralia.com.au/register Email us at contactDES@atworkaustralia.com.au 20180626 The Nat Disability Outlook JUNE 213 x138 D2 OL.pdf 1 29/06/2018 2:40:20 PM


CASE STUDIES

NDIS CASE STUDIES

PARTICIPANT CASE STUDY 1: LISA IS BACK AT UNI AND WORKING NOW AUSTIN IS MORE INDEPENDENT

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estern Sydney’s Lisa tears up when she talks about the opportunities the National Disability Insurance Scheme (NDIS) has given her son, Austin, his siblings and her. Her eldest, Austin was the 26th baby born in the world with a rare chromosomal disorder called Q10 26.3 translocation to 8P, which left him with Duane syndrome – a congenital eye disorder where the optic nerve on the outside of his eyes never developed, leaving him with a turn and blurry vision. The syndrome also left Austin with two forms of epilepsy, as well as kidney problems, which will eventually lead to dialysis and a heart murmur. Austin also has Perthes disease, which affects his hip and impacts his mobility.

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“Austin’s condition makes it hard for him to function but since he’s been part of the NDIS, he’s really improved,” says Lisa. “Now he gets regular therapies, which previously I could never afford.” Austin’s physio has been brilliant and picked up Perthes disease in his hip. If it had gone unnoticed, there would have been a high chance Austin would need a hip reconstruction. “Hopefully, through physio, we can try to avoid that,” Lisa notes. The NDIS has worked for Lisa and Austin. Lisa explains, “It’s been amazing. It was difficult and hard for me to set up because I was at uni full-time, down at Strathfield, the kids were doing Jujutsu, and I had constant other children’s appointments, but everyone fitted me in. If they couldn’t get me, they would email or call. “I know setting up to be part of the NDIS is a long, hard road, but when you get there, it’s easier, and it’s so good – it’s just so worth it! I get a bit teary, it means so much.”

PARTICIPANT CASE STUDY 2: LITTLE LUCY IS BACKED BY THE NDIS

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here’s never any erasing the numbing moment when a pediatrician phones to tell you after four months of trials, tests and tribulations, “We have some bad news and also some good news [about your baby],” recalls Anthony O’Brien, the father of three-year-old Lucy, from the Central Coast of NSW. The variable news was delivered in July 2015, and due to several feeding complications from the time of her April birth, Lucy was regarded by the pediatrician as “failing to thrive”. To describe the period as testing for Anthony and his wife Carren is an understatement of major proportions. “The bad news”, counselled the compassionate pediatrician, “is that after our last genetic test, we’ve discovered Lucy has a genetic syndrome that explains her feeding difficulties.” The mysterious genetic syndrome, 22q11.2 DS, is the result of a submicroscopic deletion on the long arm of Chromosome 22. Also called “velocardiofacial syndrome” (VCFS), 22q11.2 DS affects approximately one in 2,000– 3,000 people, making it the second most prevalent genetic syndrome after Down syndrome, according to the 22q Foundation Australia & New Zealand. The syndrome is commonly associated with cleft palates, congenital heart defects, learning difficulties or disabilities. More troubling is that 22q11.2 DS has more than 180 anomalies associated with it, many of which are described in some detail by Dr Google. Now for the good news! “We have a diagnosis and we can get on with treating Lucy,” the sympathetic pediatrician explained. Lucy was immediately hooked up with a nasogastric tube through her nose that saved her life, before graduating to a gastronomy tube inserted surgically into her stomach.

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Fortuitously, a diagnosis also means Lucy can seek supports through the NDIS, including speech therapy. Lucy has a faulty soft palate that inhibits her language and communication skills to the extent that they are the equivalent of an 18-month-old baby. The plucky toddler also receives occupational therapy to assist with her speech, eye/hand coordination, and personal, social and emotional development. VCFS has also left Lucy with extremely low muscle tone and a petite stature. “It’s still very early days, and Lucy has plenty of catching up ahead of her,” notes Anthony. “Thankfully, we have a brilliant OT and speech therapist, and there’s progress on several fronts. I’m aware of some of the criticisms of the NDIS in the media, but I am personally very thankful for the support the Scheme is delivering to my treasured Lucy.”

provides them. In fact, the whole family – including Kylie’s husband Rodney and children Millicent, eight, and Ewan, seven – have benefited from her involvement with the NDIS. “Having the extra support in place – including regular contact with a support worker, weekly check-ins from a coordinator, and encouragement to get out into the community and take part in group activities – has improved my mood and helped me engage more with my children and husband,” Kylie says.

PARTICIPANT CASE STUDY 4: A FUTURE SPORTING SUPERSTAR

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resident of Lake Macquarie in NSW, Alex says his NDIS funding has given him “the opportunity to try more activities than ever before”,

and the 24-year-old, who has spina bifida, is certainly making the most of it. Through his NDIS plan, Alex has engaged local disability provider, Lifestyle Solutions. With their help, he’s become super active in his community and, with an obvious sporting prowess, he’s excelling at wheelchair rugby, basketball, lawn bowls and he’s even taken up sailing. “My NDIS experience has been great so far,” Alex says. “It’s been 18 months I’ve been on it. Prior, I was doing similar stuff but I had to rely on my family to take me to different places, which wasn’t always possible and it was tough on them.” Alex says being part of the NDIS has really given him greater independence. “Now I don’t have to rely on others. I can do whatever I want when I want,” he says.

PARTICIPANT CASE STUDY 3: NDIS PLAYS A ROLE IN KYLIE’S NEW STORY

“O

ne day I said to the kids, ‘come on, let’s go to town’. That was the first time in three years I could take my kids out on my own because my confidence had improved so much.” Kylie knows first-hand the nuances of psychosocial disability, having been in hospital 34 times in the last threeand-a-half years. During this time, she has seen this so-called ‘invisible’ disability impact all aspects of her life – her confidence, independence, social inclusion, family relationships and everyday tasks. While the NDIS is not a panacea, it can help people with psychosocial disability get the services and support they need to live better lives. For Kylie, who joined the NDIS three years ago, the Scheme has provided certainty and continuity of funding for the supports she needs, as well as choice and control over who

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CASE STUDIES

PROVIDER CASE STUDY 1: NDIS MEANS JOBS AND EXPANSION FOR NSW PROVIDER MIDCOAST ASSIST

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ince NSW provider MidCoast Assist registered as a National Disability Insurance Scheme (NDIS) provider, its support worker pool has doubled to 42 in less than 12 months. In total, the service employs about 60 staff including plan managers, community connections officers and administration staff, according to MidCoast Assist Social and Community Activity Team Leader, Jo Newman. “The NDIS is a fantastic boost for local employment,” Jo says. Formerly known as Great Lakes Ageing and Disability Services, MidCoast Assist – which is an arm of MidCoast Council – offers support for

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older people and their carers, as well as those living with disability. It services Forster, Tuncurry, Pacific Palms, Hallidays Point, Hawks Nest, Tea Gardens, Bulahdelah, Gloucester, Stroud, Taree, Wingham and Harrington. For MidCoast Assist, the NDIS transition not only meant rapid expansion, but it also involved a new way of providing disability supports, giving participants greater choice and control. “Participants now have so much choice. It’s great,” Jo says. “Day programs are a thing of the past. Now we have several activities during the day participants can choose from.” Business expansion also means MidCoast Assist has a higher capacity to link in with volunteer programs and educational institutions. Jo explains, “One day a week our participants can

choose to volunteer at a community kitchen or Woolworths, packing shelves, under our Woollies program. As a consequence, NDIS participants are getting on-the-job training and gaining valuable experience, which is helping them to achieve confidence and contribute back to their community, noted Jo. While MidCoast Assist said its merger, its transition to the NDIS and its expansion have been successful, they admit it was “a crazy time”. However, when they look back, they all say it was “pretty remarkable” they managed to achieve what they did in eight months. “For us, it wasn’t a straightforward transition to NDIS because we were dealing with business mergers at the same time. We had lots of challenges,” recalls Jo. MidCoast Assist also decided to act as a financial intermediary, facilitating

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funds for a 12-month period to see if it was worthwhile. Now, MidCoast Assists has about 140 financial intermediaries on its books. “It’s growing, and we are getting referrals every week, so we haven’t been advertising! All our business comes from word of mouth,” Jo says. NDIS participants can also seek the help of a Coordination of Supports service through MidCoast Assist. Currently, MidCoast Assist is supporting around 92 participants with Coordination of Supports. It also supports about 152 for group and individual activities. Jo confirms, “We employ different specialists in Coordination of Supports, plan management and activities.” The NDIS nominates how many hours providers can use to coordinate a participant’s supports. “So, if it’s written into a participant’s plan, we can provide experienced Support Coordination officers to work with them and their loved ones to make the process a whole lot easier,” adds Jo. “We’ve witnessed a lot of incredible results because now people have the supports they need to live the life they want.”

NDIS ENABLES NSW INDIGENOUS PROVIDER TO HELP MORE PARTICIPANTS

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ged Care Angels & Disability Services Pty Ltd (ACADS) is an established provider of quality services to the ageing and disability sector. The company is 100% Indigenous owned and operated by Kerry Morrison and Rose Hewitt, and it services the entire Port Stephens Region and the Lower Hunter. ACAD provides services that target the growing in-home requirements of the elderly and people with disability. As a business entity seeking to deliver the highest standard of in-home care, Kerry and Rose recognise and embrace partnerships with

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healthcare providers, government agencies, community members and clients alike. Having worked with elderly clients and people with disability, Kerry and Rose understand the industry and the community at large and take great pride in delivering quality services. As a result, the pair recognised an increased demand for private in-home community care services. Before registering with the NDIS in 2015, Kerry and Rose were operating the business by brokering to other

participants through the NDIS is a significant driver for Kerry and Rose and the pair always endeavours to match the right staff member with each participant. It is also fair to say that Rose and Kerry are passionate and compassionate people, who have decided to take the NDIS journey together. The firm friends have built ACAD from scratch and have only had assistance from IBA (Indigenous Business Australia), which provided the support of a consultant.

It is fair to say that Rose and Kerry are passionate and compassionate people, who have decided to take the NDIS journey together. The firm friends have built ACAD from scratch and have only had assistance from IBA (Indigenous Business Australia), which provided the support of a consultant. providers with packages. ACAD filled the gaps for these providers, and they were also registered with the ComPacks Program to deliver services to clients exiting from the hospital system, requiring six to 12 weeks’ assistance in their homes. Since joining NDIS, ACAD has grown to just under 60 staff, and the growth of the business is attributed to Kerry and Rose obtaining accreditation with the Scheme. “Since joining the NDIS, the growth of our business has skyrocketed, and we now service just over 100 NDIS participants,” explain Kerry and Rose. As an NDIS disability service provider, ACAD offers participants respite care, social support, personal care, meal preparation, transport, home maintenance and nursing. It also provides high care, in addition to regular care. Kerry and Rose explain, “We have clients with high-level personal care needs such as motor neurone disease (MND), who use a wheelchair and more.” The ability to assist more

Meanwhile, the diligent duo worked their paid jobs seven days a week, while growing ACAD. The NDIS is the most significant economic and social reform since the introduction of Medicare in the 1970s. That said, Rose and Kerry agree there have been a few teething problems. “With such a significant reform, a few issues had to be expected,” according to Rose and Kerry. The duo asserts the myplace NDIS provider portal and the call centre had, and still have issues. Despite these hiccups, the ACAD principals dismissed comparisons made in May between the NDIS and the pink batts fiasco launched by the Rudd Government. They both agree there is a high level of regulation with the NDIS, and the Quality and Safeguards Commission, which begins rollout in July 2018, will provide even more guidelines for providers. “We both feel positive for the disability sector moving forward,” say Rose and Kerry in agreement. n

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NDIS HIGHS AND LOWS: A PERSONAL EXPERIENCE C

onfused, frustrated, overwhelmed, angry. This is the way many NDIS participants and their families felt about their initial NDIS introductory experience. Confused about new processes. Frustrated by lack of communication and information. Overwhelmed by difficulties when trying to find supports and services to meet basic needs. Angry at the complexity of a system that should be uncomplicated for people that need our support the most. I know this because I was one of those people struggling to find help I needed as my father’s carer. We joined the ACT NDIS trial for 2015-16. Within months of having an NDIS plan in place, all the longestablished supports we’d relied on

were gone. These were replaced by a budget which we were to use to pay providers – that is, once we were able to find providers that met our needs, had capacity to take us on and were able to put the requested services in place. That was OK, we thought. The NDIS is about choice and control and this gives us options we didn’t have before. It’s new and still taking shape, we can work with this to get Dad the best supports we can, we can make it work. We were optimistic and buoyed by our new autonomous status. We had no idea what was ahead of us. Providers we tried to engage with weren’t ready for the NDIS. In fact, many of them really had no idea about it or how it worked. The key issues

developed around the payment of services of supports and how these payments were made. Sometimes payments were made directly from the NDIA to the provider, sometimes they worked, sometimes they didn’t. Some support payments were made into Dad’s NDIS bank account when the invoices were submitted and we paid those providers directly. This meant reconciling statements, checking invoices and submitting requests through the NDIS portal. Ahhh the portal. The online portal would be where we could see our approved plan and budget, where we would submit payment requests. Certainly the plan was there, as was the amount of funding that had been approved. However, it was almost


impossible to understand what funding had been allocated for different services and supports. So began the phone calls to the NDIS help line. Lengthy wait times on hold, inconsistent advice and more often than not, being told that your query had been passed to the appropriate area who would “respond as soon as possible, but it might take some time because they are handling a lot of queries right now”. It was all just so stressful and disheartening in the trial stage. How do families do this? Where do mums and dads who have a child with a disability – maybe other children, plus school, jobs, groceries, everyday life responsibilities – even start to find time to look for the services and supports their child needs? Then there’s managing those supports, signing contracts, paying bills, ensuring service providers are meeting their obligations, and if not, then having to deal with that. Maybe even having to find a new service provider. Where would these parents ever, ever find time to take care of themselves? And

without feeling enormously guilty – and that’s a whole other topic! This applies to so many scenarios – children, siblings, couples, relatives, friends – where people are caring for someone with a disability but must still meet their own individual responsibilities and be able to take care of themselves. Carers must have time to look after their own needs, or we risk burning them out. They are such a crucial part of the whole support system and that needs to be acknowledged, recognised and supported. Those four words I used at the beginning of the article – confused, frustrated, overwhelmed, angry – are the reasons my friend and business partner Christina and I established our business: to make sure the NDIS participants that choose to work with us never have to experience these feelings. Christina was a carer for a close family member with a disability for over 18 years. She too knows that meeting a person and understanding where they are at in life, their support networks and their needs is the most important part about working with them. Each person we work with is unique, and that means an individualised approach to each and every person and their carers is required. Our personal experience has given us the distinct advantage of being able to see the NDIS from both sides – as carers and as a service provider. To be able to provide reassurance and a clear pathway for participants who already face enough challenges, without having to tackle another one. To provide options so people can make choices and take control of their lives without feeling overwhelmed or powerless. This is what the NDIS was created to do. The priority should be to give people the time and space to just live life. Time spent with family and friends

should not be about reconciling statements, paying provider bills and arranging services. It should be about sharing quality time together as a parent and child or a brother and sister or whatever the individual relationship is. It should be about having the right supports in place to be able to do the things they love together. It’s about having what they need to live their lives, be the best they can be and feel safe and protected. Now more than two years on, we have seen vast improvements in NDIS processes and these improvements are continuing. Much of this has been driven from within the sector. It is our responsibility as service providers to continue to champion the needs of the market and be involved in the discussion to help shape the direction and priorities of the NDIS to support those it was designed to support. After working in the government for 16+ years, I have heard innovation and responsiveness in the public sector referred to as trying to change the course of a very large ship. It can be done, but it takes time and a great deal of effort. In the case of the NDIS, it’s clear that everyone wants the ship to reach its destination, and continuing to work together, we can steer the ship in the right direction. With an estimated 460,000 participants expected to be part of the scheme by 2020, we can’t afford not to work to see the NDIS succeed in what it set out to do. n

Jennie Mitchell and Christina Schroeder are the owners of Quality Disability Management Services (QDMS), an NDIS-registered Plan Management and Support Coordination business located in the ACT providing services to participants in the ACT and NSW. Find out more by visiting: www.qdms.com.au


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Q&A WITH

GRAEME HEAD

NDIS QUALITY AND SAFEGUARDS COMMISSIONER of providers and participants across Australia The NDIS Commission holds compliance and enforcement powers over NDIS providers, taking on these responsibilities from various state and territory bodies. To clarify, the NDIS Commission deals only with service standards, while planning issues will be kept separate. What will be the situation with planning?

Graeme Head is the inaugural National Disability Insurance Scheme (NDIS) Quality and Safeguards Commissioner and took up the role in early 2018. He was previously the National NSW Public Service Commissioner. Head responded to National Disability OUTLOOK in this wide-ranging Q&A on his new role and that of the Commission. How would you describe the mission of the NDIS Quality and Safeguards Commission? The focus of the NDIS Quality and Safeguards Commission (NDIS Commission) is on helping people with disability access safe and quality NDIS supports and services. The NDIS Commission is an independent government body that will work to: • Improve the quality of NDIS services and supports • Prevent harm to and safeguard the rights of participants • Investigate and resolve problems • Strengthen the skills and knowledge

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While the NDIS Commission will oversee compliance and enforcement of NDIS providers, matters pertaining to plans and individual care arrangements will remain the responsibility of the National Disability Insurance Agency (NDIA), the independent body that implements the NDIS. What will be your relationship with the NDIA? The NDIS Commission has a separate but complementary function to the NDIA. The NDIA will continue to deliver the NDIS, providing individualised plans and support for people with disability, and coordinating service bookings, payments and access to plans for providers. However, the responsibility for registering NDIS providers will transfer from the NDIA to the NDIS Commission as it becomes operational in each state and territory. The NDIS Commission’s market oversight will complement, not replace, the NDIA’s planning and management role.

Participants will be able to raise concerns or complaints about the safety and quality of NDIS services with the NDIS Commission. However, complaints about participant plans or the NDIA itself will continue to be managed by the NDIA. The NDIS Commission and the NDIA will work together to help make the transition to the new quality and safeguards system as smooth as possible for NDIS providers and participants. When will the NDIS Commission be operational in each state and territory? The NDIS Quality and Safeguards Commission will start operating on: • 1 July 2018 in New South Wales and South Australia • 1 July 2019 in the Australian Capital Territory, Northern Territory, Queensland, Tasmania and Victoria • 1 July 2020 in Western Australia This progressive roll out is timed to coincide with the NDIS reaching full scheme in each state and territory, and allows for optimal support of providers transitioning to the new system. Until the NDIS Commission is in place in each jurisdiction, NDIS participants, providers and workers will continue to operate under their state or territory’s existing quality and safeguards systems and they remain registered with the NDIA. Do you see the NDIS Commission as an advocacy organisation for participants, a regulatory body, or more of a forum for conciliation and negotiation?

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Q&A WITH

GRAEME HEAD

NDIS QUALITY AND SAFEGUARDS COMMISSIONER The NDIS Commission is a regulatory body, with a range of preventative and corrective powers to respond to issues that arise, and to identify opportunities to prevent them in future. However, the NDIS Commission will focus on development and education as well as compliance and monitoring. It will work to build the skills, knowledge and experience of providers, workers and participants to ensure people with disability receive the quality and safe supports they need. The NDIS Commission has responsibility for a number of key processes, including: • The registration and regulation of NDIS providers • Monitoring compliance with the

new NDIS Practice Standards and NDIS Code of Conduct, which set out expectations for the quality and safety of services • Responding to concerns, complaints and reportable incidents, including abuse and neglect of a person with disability • Educating providers and participants in the use of behaviour support strategies that reduce and eliminate restrictive practices • Leading collaboration with states and territories to design and implement nationally consistent NDIS worker screening • Facilitating information sharing about quality and safeguards with the NDIA and other state, territory and Commonwealth regulatory bodies

What resources will you be deploying to monitor providers? Will you be using data and information from other government agencies or will you be solely reliant on NDIS Commission staff? The NDIS Commission has a number of mechanisms for monitoring providers. The NDIS Practice Standards are a modular set of requirements for NDIS providers that set out some of the conditions that providers must comply with to become and remain registered NDIS providers. They apply to all registered NDIS providers, including those that deliver more complex supports in areas such as behaviour support, early childhood supports, specialist support

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coordination and specialist disability accommodation. Registered providers will have their compliance with the Practice Standards audited when they apply for or renew registration. Work is well underway to establish strong connections between other government agencies, other statutory bodies and the Commission. It will be important that the Commission has good information flows to and from those bodies. There will also be information sharing with the NDIA. What powers does the NDIS Commission have in scenarios where providers are not meeting expected standards? Is the NDIS Commission able to issue fines or deregister providers?

The NDIS Commission will work with NDIS providers to help them meet new quality and safeguards requirements. It will monitor registered providers for compliance. The NDIS Commission will also investigate complaints and reports of noncompliance. The NDIS Commission will work with NDIS providers to help them meet new quality and safeguards requirements, including through education and training. It will monitor registered providers for compliance with the conditions of their registration. Registered providers will undergo a periodic audit that assesses their performance against the NDIS Practice Standards. The NDIS Commission will also investigate

complaints and reports of noncompliance with the NDIS Practice Standards, Code of Conduct and other quality and safeguards requirements. Non-compliance may be handled using a mix of tools including education, capacity building and development for people with disability (and their NDIS providers and workers), complaints handling, compliance and enforcement functions and related powers.

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The NDIS Commission will take a responsive and proportionate approach – the strongest actions will focus on the most serious issues in a preventative sense and the most serious breaches where non-compliance has occurred. In the most serious cases, penalties include revoking registration, banning providers or seeking civil penalties. Does the NDIS Commission also have oversight for workers employed by providers? If so, what is that oversight and how will that operate? The new NDIS Code of Conduct sets minimum expectations, shapes the behaviour and culture of NDIS providers and people employed or otherwise engaged by NDIS providers, and empowers people with disability in relation to their rights. The NDIS Code of Conduct applies to all NDIS providers and workers. All employees of registered providers must complete a compulsory worker orientation e-learning module that will cover human rights, respect and risk, the roles and responsibilities of NDIS workers, and the Code of Conduct. There will also be a new national NDIS Worker Screening Check. The screening will be administered by each state and territory, and will mean that only a screened worker can deliver services and supports where there is more than incidental contact with an NDIS participant. NDIS workers will be subject to national ongoing monitoring of criminal history information, and where a worker fails the screening and is ‘excluded’ from providing NDIS supports, they will be excluded nationally.

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Will participants have a direct line of contact into the NDIS Commission? How will that work in practice from the moment contact is made? The NDIS Commission aims to empower NDIS participants to exercise their rights to access good quality services, as informed, protected consumers. Participants are encouraged to raise their concern or complaint with their provider first. This is often the best way to resolve issues quickly. All

The new NDIS Code of Conduct sets minimum expectations, shapes the behaviour and culture of NDIS providers and people employed or otherwise engaged by NDIS providers, and empowers people with disability in relation to their rights. registered providers are required to have a complaints management and resolution system in place. If a person is not able to resolve a complaint with an NDIS provider, the NDIS Commission will work with the NDIS participant, their representatives (including advocates) and the provider to resolve the complaint. A complaint to the NDIS Commission can be made direct to the Commission

at any time. NDIS participants will be able to call us, make their complaint in writing, through a third party, or whatever other means works best for that person. A national NDIS Commission hotline and website is in place to channel enquiries and complaints. The NDIS Commission is to have a ‘no wrong door’ approach. How will this work? If a person with disability wants to raise an issue with the NDIS Commission, even if it is not something the Commission is able to resolve, we will still listen to the person, and help them take their complaint or issue to the appropriate place. Will providers be automatically transferred to the NDIS Commission or will they have to go through a new process? As the NDIS Commission commences in each state and territory, it will be responsible for registration and regulation of NDIS providers. Existing registered NDIS providers will have their registration and information automatically transferred from the NDIA to the NDIS Commission. Existing providers won’t need to do anything to have their registration transferred, but are encouraged to check their details, including contact details and current registration groups, in the NDIA’s myplace provider portal to make sure the data transferred to the NDIS Commission is up-to-date and accurate. They will also be given information about how to renew their registration when the time comes.n

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QUALITY AND SAFEGUARDS COMMISSION

SAFEGUARDING SERVICE QUALITY In order to achieve its goals, a national scheme for delivering services to people with disability requires a safeguarding framework of guidelines and an independent body to monitor service quality. By Lachlan Colquhoun.

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o fulfil this vital role, the Federal Budget for 2017-18 included a $209 million fouryear allocation to create the NDIS Quality and Safeguards Commission, an independent body that will sit alongside the National Disability Insurance Scheme (NDIS). The role of the Commission will be to support NDIS participants to exercise choice and control, and to ensure that appropriate safeguards are in place for NDIS supports. It will also establish expectations for providers and their staff to deliver quality support work. Legislation to establish the Commission was passed by Parliament in December 2017 and former NSW Public Service Commissioner Graeme Head has been appointed the inaugural Commissioner. Announcing the appointment, the then Social Services Minister Christian Porter said Head brought “significant skills and experience” to the Commission, having led the NSW Public Service and also spending time as Director-General of the NSW Department of Commerce, with responsibility for consumer protection policy and regulation. “Mr Head’s impressive experience in transformational change management at sector and organisation level will be a great asset as the Commission works with the sector to ensure the rights of people with disability are upheld and that the services and supports provided through the NDIS are safe,” Porter said. “This is a very important time for the Commission, which will play a key role in ensuring the success of the NDIS. This new national regulator will focus on capacity building and development for both participants and providers, as well as hold compliance and enforcement powers.”

THE ROLLOUT BEGINS Beginning its work in early 2018, the NDIS Quality and Safeguards Commission is expected to commence operations in each state and territory in

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a staged process by 1 July 2020. This will be a phased rollout in tandem with the NDIS itself, and until it is fully rolled out participants will continue to be covered by the existing state and territory quality and safeguards systems. NSW and South Australia are the first states, commencing in 2018,

It’s more about adapting processes and how they operate in terms of their organisational cultures as they shift to the idea of the person with the disability at the centre of their care, not just as someone who is on a list and who receives an amount of care and that’s it. while the remaining states will reach full scheme status by July 2019, with the exception of Western Australia which is scheduled for the beginning of July 2020. The Commission will implement the NDIS Quality and Safeguarding Framework which was released by the Council of Australian Governments Disability Reform Council in February 2017. There are eight key components of the framework: complaint handling, development and capacity building, registration and quality assurance, monitoring and investigation, behaviour support, the NDIS Code of Conduct, worker screening and reportable incidents. The purpose of the framework is to provide a nationally consistent approach to help empower and support NDIS participants to exercise choice

and control, and establish expectations for providers and their staff to deliver high quality support. Further guidelines – the NDIS Practice Standards – were tabled in federal parliament in May 2018, and outline requirements for providers operating under the Commission. The most substantial of these rules relate to Provider Registration and Practice Standards. They set out the conditions for becoming and remaining a registered NDIS provider, the Practice Standards against which registered providers will be certified, and the conditions which apply to providers delivering complex supports. There are four core standards and they cover Rights and Responsibilities, Government and Operational Management, Provision of Support and Support Provision Environment. There are also five registration areas which have their own modules to comply, and a set of Qualitative Indicators that organisations must meet in order to be verified. These cover areas of Human Resource, Incident, Complaints and Risk Management. The Commission will also be responsible for handling complaints about NDIS providers, all of which will be assessed. Some will be appropriate for a facilitated resolution process, while others will require investigation. The Commission has a range of investigative powers and enforcement actions available to it, from education and support through to more serious responses such as infringement notices, civil penalties, the revoking of registration and outright bans. Registered providers must have internal complaints management arrangements, and must report any of the following incidents: death, serious injury, abuse and neglect, sexual and physical assault, sexual misconduct, and the unauthorised use of restrictive practices.

SUPPORT FOR PROVIDERS In understanding and implementing the framework and the guidelines,

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QUALITY AND SAFEGUARDS COMMISSION

Providers currently registered with the NDIA will be automatically transferred to the Commission. Providers will be notified in advance when to begin their registration renewal with the Commission. providers will have not just the support of the Commission but also from experienced consultants like Christine Dempsey, a director of Brisbane-based firm Amergin. Dempsey has inside knowledge of the NDIS, having worked in the office of Bill Shorten when he was the Parliamentary Secretary for Disability and Children’s Services in the previous Labor government, when the NDIS was originally conceived. After eight years in the federal government, largely with the Department of Social Services, Dempsey has joined Amergin which

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delivers advice to providers around compliance and how they can transition to the NDIS. “Our staff have already been involved in the development of state-based frameworks which are in practice at the moment, and we have worked closely with the different people who have been involved in the development of the NDIS framework,” says Dempsey. “So we have a lot of experience and knowledge around the existing frameworks and also the new national framework, and where we specialise is in supporting suppliers to understand the compliance

requirements, and helping them transition to the new ones.”

A CHANCE TO DIFFERENTIATE The NDIS, says Dempsey, has created a lot of interest from new players in the provider market, which has – from a commercial perspective – become much more competitive. The hope is that in seeking to differentiate themselves in what is now a larger marketplace, providers will focus on quality as a differentiator. Differentiation will also require an enhanced focus on communication with the market, because although the disability services area is very ‘mission driven’, providers will increasingly need to communicate this. “In my last years of working the DSS, I was heavily involved in working with existing providers in transferring to the NDIS,” says Dempsey. “It was there that I saw the very great need for existing and new providers to be


QUALITY AND SAFEGUARDS COMMISSION

prepared to understand what the new scheme was about and understand the idea behind personcentred care, because that is a huge change for the market.” The NDIS, says Dempsey, is a “big game changer” and the advent of the scheme has brought many new players into the disability sector, although many are headed by people with longstanding experience. “Many of these new providers have been working in the sector themselves for many years and are seeing an opportunity to strike out on their own and set up their own business,” she says. “They have seen how they would like to do things differently and that this is their opportunity, to take their skills and experience and also their passion for this work and make it into something they own themselves.” Regardless of the profile of the organisation, all need to be

supported as they adapt to the new scheme and its requirements around standards and compliance. “Some existing organisations have been around for many years and have done it very well, while others have done things in a certain way and need to adapt,” says Dempsey. “But it’s more about adapting processes and how they operate in terms of their organisational cultures as they shift to the idea of the person with the disability at the centre of their care, not just as someone who is on a list and who receives an amount of care and that’s it.” The NDIS, she says, will require providers to focus both on change management and compliance, which although it might be a “dry and boring subject is also incredibly important”. “There is a lot of education needed on how services need to be provided and the safeguarding of clients, and

State & Federal Sector Updates

we are heavily involved in educating people about what this means to providers on the ground,” says Dempsey. “So there is a big focus on compliance, and that means attention to back-end processes around audits and ensuring that things are in place to make sure service is delivered right.”

THE SHIFT TO SELF-DIRECTED CARE As Dempsey says, one of the big changes in the NDIS is that it puts the person with the disability at the centre of their own self-directed care. All participants in the NDIS will have their own plan built around their own needs, what they want out of life and the support they need to achieve that. Self-management also means that participants have the opportunity to purchase supports from suppliers not registered with the NDIS, but are included in an individual’s NDIS plan.

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31/05/2018 10:20 A


QUALITY AND SAFEGUARDS COMMISSION

The NDIS Quality and Safeguards Commission has firmly designated responsibilities to NDIS participants, and is responsible for handling complaints about the quality and safety of NDIS-funded services. For participants, there is a ‘no wrong door approach’. This means that if the Commission is approached about an issue that is outside of its remit, it will help to link the person with the correct body or agency. Anyone can make a complaint to the Commission and if it is outside its area of responsibility, a referral will be made.

WHAT THE COMMISSION MEANS FOR PROVIDERS For providers, the Commission exists

to ensure they are compliant with the quality and service framework and guidelines. Providers currently registered with the National Disability Insurance Agency (NDIA) will be automatically transferred to the Commission. Providers will be notified in advance when to begin their registration renewal with the Commission. There are two pathways for providers: verification and certification. Verification is appropriate for those providers delivering lower risk, less complex supports or services. Certification is for those providers delivering higher risk and more complex services. The framework also impacts on workers in the disability sector. Worker

THE NDIS FRAMEWORK PRINCIPLES

T

he framework consists of measures targeted at individuals, the workforce and providers within developmental, preventative and corrective domains. Developmental measures help to strengthen the capability of people with disability, disability workers and suppliers of supports under the NDIS. The preventative and corrective measures help to ensure appropriate responses to issues that arise, as

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well as identifying opportunities to prevent them in future, either through a regulatory response, or through education and capacity building. The framework principles are: • Human rights: Measures within the framework are designed to uphold and respect the human rights of people with disability. • Choice and control: Developmental measures within the framework are designed to empower and support people with disability to

screening will be collaboratively managed with the states and territories, and localised worker screening units will be responsible for screening checks in their own jurisdictions. The Commonwealth has responsibility for working with all governments to develop and implement national policy and standards. In preparing for the new system, the Commission has advised providers to continue to maintain their quality and safety standards in their current jurisdictions. Beyond that, providers are urged to review their contact details and registration groups on the NDIS Provider Portal, and if possible attend information sessions on the NDIS Practice Standards.n

make informed decisions about providers and supports. • National consistency: The framework is designed to ensure that people with disability have the same protection, regardless of where they live in Australia. • Proportionality: The regulatory requirements for workers and providers are tiered to ensure regulation is proportionate to the level of risk associated with the type of support offered and the needs of the participants supported. • Presumption of capacity: The framework, like the NDIS, starts from the presumption that all people with disability have the capacity to make decisions and exercise choice and control. • Minimisation of red tape: The framework streamlines requirements so the system is easier for people with disability to navigate and red tape is reduced for providers. • Efficiency and effectiveness: The framework is designed to support the development of an efficient and effective NDIS market.

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EMPLOYMENT

A NEW ERA FOR EMPLOYMENT

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EMPLOYMENT

With the Disability Employment Services reform upon us, what will it mean for participants and what will the effect be on the industry? By Lachlan Colquhoun.

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ina Zeleznik’s vision of ultimate progress in the employment of people with disability is a world in which there are no quotas and everyone competes for the same roles. “Instead of having a target of 5% of your workforce having a disability, based on the disabled percentage of the population, how about a criteria which just looked at the number of new starts at the organisation each year?” says Zeleznik, a veteran of three decades in the disability sector who is now Chief Executive Officer at Disability WORKS Australia (DWA). “There shouldn’t be any job that a person with a disability can’t apply for, and that is what I would like us to work on now – the idea that any job can be filled by a person with a disability and employers need to know that.” While Zeleznik’s vision may be some way off, she does believe that the landscape for disability employment has significantly improved in recent years, even though the advance may have been incremental. More than 13% of working age people in Australia have a disability, but only 53% are participating in the workforce. “Employer attitudes towards hiring people with a disability have definitely improved and come a long way,” she says. “A lot of it is because of the Disability Discrimination Act, there’s no doubt about it, but also events such as the Paralympics and Commonwealth Games and even the ABC series ‘Employable Me’ are helping change attitudes. “I’ve always believed that the main reason employers didn’t employ people with a disability is because of

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the fear factor, and a positive thing is that for many of them those barriers are being gradually broken down.” Disability WORKS Australia originally began in South Australia in 2004 and now has offices in all other mainland capital cities. The organisation is self-funding and independent of the Disability Employment Services (DES), and positions itself between providers and employers, working with both to find positions for people with disabilities and then preparing the identified candidates to succeed in their role.

More than 13% of working age people in Australia have a disability but only 53% are participating in the workforce. Each year it places around 1,500 disabled people in employment and now works closely with major corporates such as Coles Group, the South Australian, Victorian and Commonwealth governments, Kmart, Target and Bendigo Bank. Since inception, DWA has placed around 5,000 people in Coles, and Zeleznik says that the process is becoming “easier and easier” the more familiar corporates are with the process, and as they see the demonstrated success of their employees with disability. “Corporate Australia is now taking this seriously,” says Zeleznik. “When I first started it was ‘yes we’ll do it’ but they never got around to it. “I found it interesting that even if

you get to talk to those at the top in a larger corporate, if you are not working with the ones who will be working with the person with the disability, or with the direct managers, then it might not happen.” DWA has a 15-year track record in the sector, but it will soon be working with a range of new organisations on the provider side from July 2018.

DES PARTICIPANTS GET GREATER CHOICE A new Disability Employment Services (DES) panel is being established, through a grant application process, following extensive consultations with people with disability, peak organisations, services providers and employers. Under the process, 100 existing DES providers have been recommended to continue providing services, and 42 new organisations have been added to the panel. The new arrangements are designed to give DES participants greater choice about the services they receive. A major change is that participants will be able to choose their provider in future, removing the current market share arrangements. People will be able, for example, to choose a provider outside of their local area if they wish, and the new arrangements will make it easier for participants to change providers if they are unhappy with the services they are receiving. The Commonwealth government will invest more than $3 billion into DES over the next four years, and an additional $300 million over the next 10 years. Smaller providers will also share an additional $10 million over the next two years to assist their transition to the new program. While the current DES program placed 400,000 people with a

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EMPLOYMENT

In my experience, the main barrier is usually the recruitment process itself and not whether that person can do the job or not. disability into employment, the new program aims to ensure that people with disabilities are included in the current jobs boom. “Depending on the offers accepted, we are expecting significantly more employment services to be available for people with disability, with more of the funding offered contingent on supporting people into lasting employment,” says Jane Prentice, the Assistant Minister for Social Services and Disability Services. “We look forward to more people with disability securing meaningful and lasting employment.” The changes have prompted activity among providers, creating joint ventures between commercial

employment providers and not-forprofit disability services groups, with the aim of delivering better outcomes to participants. Other providers are expanding their geographical footprints and opening new offices in regional centres, while others are investing in their systems and processes to improve their onboarding and retention in what will become a more commercial market. “Performance, and its associated listing benefits, brand awareness, customer satisfaction and loyalty will all become increasingly important influences on providers operating models and profitability,” according to a whitepaper from government solutions provider Hivetec.

“How a provider promotes and delivers services to its customers will be as important as what they offer, and how successful they have been in the past.” Hivetec notes that the new DES market will require new systems and processes, such as direct registration strategies, as providers manage the flow of customers previously controlled by Centrelink and DSS. However, the main differentiator will be the customer experience.

HELPING PARTICIPANTS GET ‘JOB READY’ At DWA, Tina Zeleznik is looking forward to the new landscape and to working with new providers and incumbent players newly energised by competition. Her role, she says, is to work with providers who help get the participant “job ready”, and then assist them with the information they need to take roles at the corporates


EMPLOYMENT

DWA is working with. “We educate the participant on the skills levels which are required, and we give them feedback,” says Zeleznik. “We don’t put anyone forward to a position with any of our employers without actually meeting them first.” These meetings can show that the job seekers may need some modifications of the role description or the conditions, or they may need a particular licence, a government screening check or skills such as typing speeds. There can also be an appropriate configuration of financial incentives. “It might be that we need to negotiate extra sick leave for somebody who has mental health issues,” says Zeleznik. “In these cases we might negotiate a subsidy which ensures that the employer can put somebody else into the role for those extra sick days.

Workskil Australia offers a caring Disability Employment Service that is tailored to your individual needs.

Whether you’re looking for new work or struggling in your current workplace, we can help you. We provide a complete recruitment service, from help with cover letters to arranging workplace modifications that suit your needs. You will receive support when you start your new job and dedicated, ongoing care from your Employment Coach as you continue in your role. If you are currently struggling in your job, we can help make workplace changes and offer counselling to keep you working. Contact us today. Call 1300 967 575 or visit workskil.com.au

Service is available in South Australia and New South Wales, Hunter region.


WORKSKIL AUSTRALIA HELPING JOB SEEKERS OVERCOME BARRIERS TO EMPLOYMENT

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ot-for-profit organisation Workskil Australia is working closely with progressive employers across the country to help job seekers manage hurdles in finding and keeping work. As one of the largest employment, community and youth services providers nationally, Workskil Australia is also a certified provider of the Australian Government’s Disability Employment Services for people with a disability, illness or injury that require specialised employment assistance. Workskil Australia’s Chief Executive Officer Nicole Dwyer says while many workplaces have made significant advances in embracing workers who need extra support, job seekers still often face a difficult path to employment due to discrimination and society misconceptions. “Workplaces have come a long way in recent years in understanding the diversity of people in our society and their individual needs at work. However, a lot more needs to be done to ensure a level playing field for all job seekers,” Ms Dwyer says. “Workers with disability, illness or injury still face discrimination and misconceptions about their potential value to a workplace. Everyone deserves the right to work, make a contribution and feel valued.” Workskil Australia has partnered with numerous businesses from a variety of industry sectors to help find employment for people with mental health issues and/or a physical disability. “The overwhelming feedback we receive is that when someone with a disability or health condition is given a go, the employee relishes the opportunity, prospers and provides real value to their employer. It also has a large positive impact on workplace culture,” Ms Dwyer says.

WIN-WIN FOR EMPLOYERS AND EMPLOYEES Under the Workskil Australia Disability Employment Services, flexible support can be provided and tailored to the specific needs of employers and employees, including: • Financial support for work clothing, transport, education and training • Workplace modifications and/or specialised equipment • Dedicated and caring employment coaches • Ongoing support and counselling on and off the job • Wage support for employers • Work Assist services for those requiring support to maintain their employment • Information about Job Access and the Supported Wage System With this support, job seekers can assess their key strengths, interests and abilities to develop suitable job goals, create an employment pathway plan, link directly with employers and support services as well as access work experience opportunities and real life work trials.

SUCCESS STORY Jacob of Kangaroo Island in South Australia is one of the many job seekers who have found employment through this program. Workskil Australia supported Jacob in securing his Certificate III in Business, finding employment with the Flying High Café at the Kingscote Airport and successfully passing his barista course. A Disability Awareness Training Program was created relevant to his needs and that of his employer. Funding was secured to purchase a disability-friendly cash register to assist in Jacob’s training and Workskil Australia helped Jacob in obtaining his provisional driver’s licence.

Other local employers on Kangaroo Island were also invited to attend a free training session to help them learn more about the opportunities and benefits created when an employer takes on a job seeker with a disability. Jacob has maintained his employment for well over 12 months now, meeting all his benchmark requirements and making a positive impact on his workplace, much to the delight of his employer.

ABOUT WORKSKIL AUSTRALIA Workskil Australia is a not-for-profit and charitable organisation committed to transforming people’s lives through employment, Indigenous, youth, community and disability services. It has a network of 69 sites in SA, Victoria, NSW and WA and a workforce of more than 700 – making it one of the country’s largest employment services providers. In 2017, Workskil Australia helped 20,250 clients into employment. For more details on Workskil Australia’s Disability Employment Services, go to www.workskil.com.au or call 1300 967 575.


EMPLOYMENT

“Then if there is someone with high support needs and we believe they might benefit from someone coming along and helping them learn the job, then we access that service from the provider, including a supporter wage.” In these cases the participant has two agencies working on their behalf, and is going into an employment situation with an employer that has been educated on their particular needs. With the employers, much of DWA’s work is with human resources departments, where they look to develop an employment strategy for people with disability. Often this becomes an ‘add on’ to their action plan. “Many organisations have actions plans that look at access and customer service, but they have limited processes in place for the employment of people with a disability” says Zeleznik. “So I start working with them to develop a process that can facilitate the successful employment of people with

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There shouldn’t be any job that a person with a disability can’t apply for, and that is what I would like us to work on now – the idea that any job can be filled by a person with a disability and employers need to know that. disability, and one of the first things I look for is barriers which need to be broken down.” One such barrier, common to the employment of graduates, can screen out applicants with no employment history. While many students will work part time or in parallel with their studies, for many people with disability this is an impossibility, but this is not recognised in what is sometimes an automatic ‘cut off’ in candidate screening. “I look at where these cut-offs are and create a modified model for them,” says Zeleznik. “In my experience, the main barrier is usually the recruitment process itself and not

whether that person can do the job or not.” The other big barrier, she says, is the “fear factor about the unknown” and the good news is that this is also being broken down, although too slowly for some. “The more contact employers have with recruiting people with disabilities, the more they can understand they can be great employees like everyone else,” says Zeleznik. “Let’s hope the new DES system can build on what has been done in the last decades, and that we can work with providers and employers to get better outcomes for employees with a disability.” n

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CHORUS MERGER

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egardless of the industry in which they take place, mergers always have the potential to become messy affairs. When it is handled poorly and the establishment of culture fails, the resulting merged organisation is often doomed. Fortunately for more than 10,000 Western Australians, the merger that saw Community First, Volunteer Task Force and Care Options – three Western Australian care organisations – become Chorus, was a blueprint for how such shifts can be carried out. The three organisations all saw the writing on the wall that as individual entities their futures were limited; looking further into the future, it seemed supplying appropriate care to the growing number of Western Australians who required it would become more and more difficult. The unification was a way to strengthen, a way to survive and by pooling resources and capabilities, Chorus will be able to not only continue providing care for those in their community who require it, but to substantially improve that care. A strengthened culture was quickly

identified as key to the Chorus approach to long-term and short-term success. Chorus has then become an evolution of the three previous organisations and has aimed to extract and combine the best qualities of all three – both culturally and in terms of the day-to-day business. Chorus CEO Dan Minchin set the tone for a transparent working environment and transition in the early post-merger days, insisting he and his staff adhere to three key rules: everyone would be expected to listen and take on board ideas and suggestions from others, everyone would show respect in each interaction and decision and Chorus would move through that transition as quickly as possible. Head of brand and people at Chorus, Louise Forster, says Dan’s emphasis on instilling and nurturing a respectful and transparent culture has helped the organisation hit the ground running in the year post-merger. Forster also highlighted the attitudes brought into the merger process by the previous organisations’ chairs: Dr Moira Watson (Volunteer Task Force),

Andrea Hall (Community First) and Barbara Powell (Care Options). “It was more Dan’s style and his commitment to the culture that really underpinned the starting of that culture post-merger,” Forster says. “The board have set a culture of strong governance, however, and that’s led to a culture of accountability, autonomy and possibly some creativity. I think the boldness of the board’s decision to enter the merger and to work through the merger at such pace – most of the work was done in six months – it’s quite impressive really. “By leaving their egos at the door they established an even playing field and a culture that is ‘about the community’, it’s about the organisation and having something for the community. It’s not about board members or executives, it’s all about customers. “We had a litmus test early on, which was that any decision, anything we do, shouldn’t adversely affect Mrs. Brown on Safety Bay Road – that was our way of testing whether it could negatively impacting customers.”


Left to right: Dan Minchin - CEO, Fionnuala Franey - Head of Enabling Services, Jamin Hirte - Head of Customer Operations, Louise Forster - Head of Brand and People, Ryan Chapman - Head of Finance.

CREATING A PLAN To reflect the desired culture of the resulting singular organisation, a rapid transition was seen as important. Nobody involved wanted the futures of staff and volunteers to lie in limbo any longer than was necessary and as such, several governance structures were implemented. An oversight group, established by the boards involved in the merger, met between once and twice a fortnight and regularly made up to 20 significant decisions in regards to the merger at each meeting. The three organisations had also already identified the concept of merging as potentially beneficial to their futures – none were dragged into the process unwillingly and were instead receptive to the concept of combining resources and capabilities. Further strengthening the improved culture at Chorus was the appointment of Dan Minchin as CEO. While the board of Chorus is made up of members who were affiliated with the previous organisations, Dan had no prior connections to Community First, Volunteer Task Force or Care Options, which brought an air of neutrality to the head of Chorus – his presence,

experience and of course his attitude removed any suggestion of favouritism to one of the former entities. “We’ve definitely tried to create Chorus to build on the positives of the three predecessor organisations and I do hope we’ve picked the best to form a stronger culture,” Forster says.

THE MERGER PROCESS WAS ULTIMATELY ABOUT ENABLING AS MANY PEOPLE AS POSSIBLE – INCLUDING STAFF AND VOLUNTEERS – TO LIVE THE LIFE THEY CHOOSE; AND IN THE CASE OF CLIENTS, IN THEIR OWN HOMES AND COMMUNITIES. “But I do think that Chorus is unique; I’m referring to Chorus as a new pair of shoes that we’re wearing in. It’s not easily identifiable from the three – it’s a new type of organisation, a fresh approach. Those sorts of things are different to the three before.” The merger process was ultimately about enabling as many people as possible – including staff and

volunteers – to live the life they choose; and in the case of clients, in their own homes and communities. Chorus certainly now appears in a far better position to achieve this than the three predecessor organisations were prior to the merger. That is not to say the process has not negotiated its fair share of obstacles. Forster says the speed at which the process was completed – despite the success – meant certain things had to be ironed out along the way. However, the culture that was maintained throughout the eight-month-long merger and continued into the first year post-merger, has also meant those speed humps were dealt with, or will be dealt with in a way that upholds a strong set of values. “Sometimes the bumps are what creates the culture, because how you deal with problems and challenges that arise shows as much about leadership and decision-making and culture as it would if everything goes smoothly,” Forster says. “We’re not a culture of blame – we’re about trying to fix the issue and trying not to repeat the mistake… we’re people first, people more than policy. You look at the impact on people and then consider policy.” n


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M E N T A L H E A LT H

IT’S UP TO US TO MAKE THE NDIS A GRAND DESIGN The National Disability Insurance Scheme (NDIS) is a grand design in the making and we are the architects, the builders and the eventual occupants. By Frank Quinlan, CEO, Mental Health Australia.

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s taxpayers we all have a vested interest in a successful NDIS. As mental health advocates, we want to see it succeed – including those in need of psychosocial supports. And as visionaries for human rights, we know that an NDIS that truly gives life to the principles of choice and control could be ground-breaking on a global scale. As consumers, carers and potential participants we all want to be, and

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should be, involved in every decision taken to develop a responsive NDIS. We should learn from mistakes, make changes and improvements where needed, and advocate for better systems, plans and pathways. And this is what will make the NDIS a success. Over time. Because the Scheme that we are working in, on and with right now, should look very different 10 years from now, because of our input, and that’s why it will work.

At the heart of the NDIS, the National Disability Insurance Agency’s (NDIA) commitment to service says this: We will: • Provide people with choice and control to access the most appropriate supports and services • Provide people with support to become more independent and included in the community • Recognise and uphold informal support and care arrangements • Welcome, respect and value feedback • Raise awareness and knowledge in the community of how to support people with disability

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If this commitment to service is realised, and backed up with consultation, feedback and flexibility during the rollout periods and first stages of design, the NDIS has the potential to see Australia lead the way in responding to the needs of people living with disability. Lead the way by achieving the stated aim to give people living with disability better access to personalised, high quality and innovative supports and services. A specific focus is to enhance the independence, social and economic participation of people with disability and their carers. What will the NDIS look like 10 years from now? That is likely to be determined by early participants, and those who advocate alongside them, just as much as it’s up to the NDIA. People who live with disability,

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along with their carers and supporters, deserve certainty regarding the long-term supports they rely upon. But how do we achieve that certainly, in an ever-changing economic environment? Firstly, we need to accurately describe the supports the NDIS will provide. As the NDIS rolls out, it is still not entirely clear exactly what constitutes “reasonable and necessary” support. As more and more participants enter the NDIS and develop packages of support, this will become clearer, the design will take shape. There will be debates at the edges, and decisions made about what is in and what is out. And making these decisions is further complicated by the fact that for many participants, those reasonable and necessary supports will look different to supports that have previously been

provided, or in many cases, not provided at all. The vision for the NDIS is that “individual choice and control” will mean individuals, and their carers, are empowered to make their own decisions about reasonable and necessary supports. We have heard many reports of initial planning being a frustrating and challenging process for many participants, but there are also stories of hope and success, especially in those places where the Scheme has evolved through the teething process. As the entire process gathers momentum, the picture of what the total ongoing cost of the Scheme will be also become clearer. We also need a clearer picture of which psychosocial supports will persist outside the Scheme, and

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M E N T A L H E A LT H

which will be withdrawn. This seems particularly important in the areas of mental health and psychosocial disability, where many supports previously provided outside the Scheme are being withdrawn, even though they were often inadequate. This is the first step in providing certainty. Further, we need an enduring and non-partisan commitment to funding the “reasonable and necessary” supports promised by the NDIS. This seems much more challenging. What part of the Federal Budget is ever ‘guaranteed’? Our political discourse is full of debates about the cost and funding of essential services and programs. A Medicare levy raises funding that can be spent on health, but Medicare items can be added or removed from the schedule of payments. Defence enjoys a notional promise of spending according to a percentage of the GDP, until a Government releases a budget that spends less. Education spending has been hotly debated in recent years, though I don’t think you would find a single person who did not consider it ‘essential spending’. When the Government proposed an increase in the Medicare levy a year ago, to support spending on the NDIS, it was not hypothecated: that’s to say, there was no guarantee or direct arrangement that would have seen revenue spent directly on the NDIS. So what is the best guarantee of ongoing NDIS funding? A well run Scheme, and constant vigilance from participants, carers, supporters, advocates and the broader community. Vigilance that demonstrates the long-term benefits, and compels governments and oppositions to make good on the promise, made on our behalf, to provide reasonable and necessary supports to all of us who need them. To this end, Mental Health Australia is managing an exciting

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project which aims to describe ways to provide support for NDIS participants with psychosocial disability that focus on capacity building and recovery. To do this, Mental Health Australia has been working with consumers and carers, providers and other experts through a Delphi process to refine a set of alternative typical support packages, and present them to the NDIA.

Mental Health Australia is managing the project under a service agreement with the project partners who have funded the project, and the National Mental Health Commission has also provided a small grant to support the project. Specifically, the project intends to describe an optimal list of psychosocial support services for people with a psychosocial

The Scheme that we are working in, on and with right now, should look very different 10 years from now, because of our input, and that’s why it will work. The starting point has been existing evidence, including historical empirical service use and outcomes data held by providers. By aggregating and analysing existing service level data from providers, two major products will provide an alternative set of policy and procedural reference points for the NDIS which better reflect the needs of participants with psychosocial disability. These two products will be: 1. A list of optimal psychosocial services 2. Model aggregation of these services into typical support packages The project is a joint initiative with Aftercare, Flourish Australia, Mental Illness Fellowship of Australia, Mind Australia, Neami National, New Horizons, Star Health and Wellways to provide significant support in the form of service level data, expertise in service delivery, funding and provide overall direction. Consumers and carers are involved in overseeing the management of the project and providing lived experience expertise to the development of the list of psychosocial support services and the typical support packages.

disability, and identify the most appropriate aggregations of these services into ‘packages’. These packages are intended to inform the ‘reference packages’ used by the NDIA to provide an expected annual funding level for participants with similar support needs and characteristics. The hypothesis to be tested is that an alternative investmentdriven model for each participant can be determined that will improve outcomes for participants compared to those currently being achieved. The rationale for this is that with psychosocial disability, significant gains can be made through early investment and capacity building, improving both clinical outcomes and social functioning in the future. The project is one way we can help to improve the design of the NDIS. Helping to honour the commitment to “provide people with choice and control to access the most appropriate supports and services” they require. And helping iron out the teething problems now, to ensure the design and build stands for generations to come. n

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NATIONAL COLLABORATION KEY TO NDIS SUCCESS By Lucy Brogden, Chair and Dr Peggy Brown AO, CEO, National Mental Health Commission

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he National Mental Health Commission believes all Australians are entitled to live a contributing life. For those Australians with a lived experience of mental illness, there should be easy access to the right services and treatments at the right time, and support provided as required to maintain connections with family and community, have something meaningful to do and feel secure and safe. The Commission’s role is to be a catalyst for change to achieve better outcomes for people challenged by mental health issues or suicidal thinking. We monitor what is and is not working in the mental health and suicide prevention systems across the nation, reporting directly to the Minister for Health. We also report to the Prime Minister twice a year. In 2014, the Commission delivered to the Australian Government the Contributing Lives, Thriving Communities: Report of the National Review of Mental Health Programmes and Services. The report outlined the investment in mental health and suicide prevention nationally but also the economic cost of a system that is complex, fragmented and difficult to navigate for those needing help at a vulnerable time. It proposed key strategic directions for reform of the mental health system and included 24 recommendations. The Australian Government’s response to the review effectively endorsed many of the recommendations, in full or in principle, and a number of the recommendations provided the foundation for the Fifth National Mental Health and Suicide Prevention Plan 2017-2022. The Commission’s work is strongly guided by a human rights approach with a strong emphasis on the social determinants of health. We work with policy and service specialists in health,

housing, employment, justice, education and social services. We also work with key stakeholders to promote a strong evidence-based approach to care being delivered across all communities by a qualified and supported workforce.

EXPERIENCES OF THE NDIS FOR PEOPLE WITH PSYCHOSOCIAL DISABILITY

The National Mental Health Commission has a strong and active interest in the success of the National Disability Insurance Scheme (NDIS). By listening to participants and service providers and working closely with the National Disability Insurance Agency (NDIA), we aim to achieve the best outcomes for people living with psychosocial disability and those who love and care for them. In our consultations across Australia, we have heard a variety of stories about people’s experience with the scheme. Many are positive and in some cases, life-changing for the participants and their carers. Unfortunately, some accounts are less positive about their experience of the NDIS to date, with participants reporting significant distress after attempting to engage with the scheme. Our experience resonates with the findings of a plethora of reviews and reports released over the past three years highlighting early implementation issues with the NDIS, particularly as it relates to

mental health and psychosocial disability. Some areas where opportunities for improvement have been identified include: • The desire for greater clarity around the eligibility criteria for psychosocial disability • A clear preference for face to face meetings when developing a plan rather than telephone-based meetings • Enhancing the understanding and knowledge of planners and assessors on the needs of people with psychosocial disability and ensuring that the tools used by the NDIA in conducting assessments are fit for purpose and deliver consistent results • A strong preference for participants to tell their story only once, averting the need to retell individual circumstances to multiple staff members • Considering ways to flexibly tailor packages to facilitate a timely adjustment to their plan when an individual’s needs may change in line with an episodic illness • Including families and carers more effectively in the assessment and planning processes • Reducing waiting times and delays in receiving plans and services • Ensuring that information about the NDIS is available as needed and that assertive outreach ensures that hard-to-reach cohorts are effectively engaged


The Commission acknowledges the ongoing work of the NDIA in responding to the feedback from families, carers and providers provided directly and through the various reviews. In particular, the NDIA announced a review of the participant and provider pathways, including for psychosocial disability, in October 2017. It was particularly pleasing to see that the NDIA has engaged Mental Health Australia to run workshops to enable NDIS participants and providers to have input into its design of a tailored pathway specifically for people with psychosocial disability. We are confident that this co-design approach will deliver an improved experience and better outcomes, and look forward to timely implementation of the new psychosocial disability pathway. Mental Health Australia is also leading a project on ‘Optimising Supports for Psychosocial Disability’ which aims to identify the best types of supports for people with psychosocial disability to purchase with their NDIS funds. The Commission also supports this important piece of work and has contributed funding towards the project. We remain keen to continue to work closely with the NDIA and other key stakeholders to achieve positive change that will address the issues outlined above and see better outcomes for all.

SUPPORT FOR PSYCHOSOCIAL DISABILITY OUTSIDE OF THE NDIS

We acknowledge that the NDIS is only one system helping people with a psychosocial disability, and is not designed to cater for everyone. However, it is important that no-one falls through the cracks in the system, and that those not eligible for the NDIS are able to access the supports they need elsewhere. The Commission will seek to monitor and report on the outcomes for people with psychosocial disability (and their carers) within the scheme, but we also wish to work collaboratively with jurisdictions to track the pathways of those individuals who are not eligible for the scheme, and in particular, for people who are currently receiving services from highly valued programs such as Partners in Recovery, Personal Helpers and Mentors and Day to Day Living that are transitioning to the NDIS. About 8,800 clients of these mental health programs are expected to be deemed ineligible for the NDIS. We are pleased that the needs of this latter group have been recognised by governments with their commitment to continuity of support. We also welcome the $92.6 million over four years for continuity of support announced in the 2018-19 Commonwealth Budget. The Commission understands that there will be

five different packages available from 1 July 2019 for continuity of support – with one of the packages being for mental health programs. We are, however, seeking to understand how this funding of $92.6 million for continuity of support relates to the $80 million measure that was announced in the 2017-18 Commonwealth Budget for psychosocial support for people deemed ineligible for the NDIS. The $80 million over four years was put forward on the basis that it was to be matched by states and territories, and we understand that all jurisdictions now have bilateral agreements in place with the Commonwealth Department of Health on avenues to ensure psychosocial disability services are available to those deemed ineligible for the NDIS. In short, we eagerly await clarification on what services will be made available to people for psychosocial disability supports outside the NDIS, but note that Primary Health Networks (PHNs) potentially have a key role to play in this space. Already, they are required to develop a stepped care model of services catering for the range of needs within their region. This includes commissioning services for people with severe and complex illness who are receiving care in the primary care sector. PHNs are well placed to take a holistic approach to meeting the needs of their regional population and could play an essential role in commissioning psychosocial supports for individuals with severe and complex mental illness who are not eligible for the NDIS, if governments at both Commonwealth and state/territory levels appropriately direct funding through them to enable them to do so.

NDIS AND THE MARKET

With the advent of the NDIS, consumers have, for the first time, choice and control over who provides their services. This market-based approach necessitates a major change for service providers, moving from historical block funding to individual contracts with consumers. For the NDIS to be effective, it requires participants to be able to make informed choices. The Commission is aware that some people with a psychosocial disability may face barriers in effectively exercising choice and control. We have also heard evidence that in the early days of this market transformation, there are gaps in service offerings, thus effectively limiting consumer choice and control. We are keen to work with the NDIA to

ensure participants have access to quality, effective care, and look forward to the report from the Joint Standing Committee Inquiry into the ‘Market Readiness for Provision of Services under the NDIS’ which is currently examining how providers are making the transition to the market-based system. The Committee is expected to release its report by 23 August 2018. The Commission also welcomes the establishment of an independent NDIS Quality and Safeguards Commission to promote nationally consistent quality assurance mechanisms and safeguards for NDIS participants, including those with a psychosocial disability. Commencing on 1 July 2018, with a phased implementation, this will be an important step in regulating the NDIS market and providing assurance to participants and their families and carers.

LOOKING AHEAD

Having strongly supported the establishment of the NDIS and advocated for the inclusion of psychosocial disability within the scheme, the Commission continues to closely monitor its implementation. We recognise that large-scale social reform, such as the NDIS, takes time. It requires adjustment from governments, consumers and providers in the way disability support services are conceived and provided. Collectively, we must strive to ensure this new model achieves its full potential and that people with lived experience of mental illness are able to participate fully, both socially and economically, in their communities. The Commission is uniquely positioned to provide independent advice to Government and the NDIA about the implementation of the NDIS as it relates to mental health and to assist in working collaboratively across the different systems which support people with a psychosocial disability. We will endeavour to ensure the NDIS appropriately meets the needs of people living with a psychosocial disability, and that those outside the scheme also have access to support them to lead contributing lives.  National Mental Health Commission Switchboard (02) 8229 7550 enquiries@mentalhealthcommission.gov.au


REGIONAL

THE TYRANNY OF DISTANCE With more than two thirds of Australia’s population living in capital cities, it is little wonder that one of the most significant challenges for people living with disability in regional areas is accessing the support they need. By Harry Thring.

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f the third of our country’s population living outside capital cities, half also live outside of regional towns. Accessing support for these people is often a battle – often due to the significant distances involved. If somebody is unable to drive themselves, or even if they are able to, the distances involved in commuting between home and regional service providers is such that large chunks of the week are eaten up behind the wheel. Not to mention the cost of fuel. But for those unable to drive, the difficulty becomes almost unbearable. LiveBetter is a community service organisation delivering care and services

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REGIONAL

to regional and rural New South Wales and Queensland. The organisation is focused on helping its customers find control over their services – to try and give people living with disability choice over how to access the support they need. As such, the organisation is well aware of the various issues affecting those living in rural and remote locations.

RURAL AREAS STARVED OF CHOICE Take the story of one customer, for example. An acquired brain injury prevents this person from completing many of the functions someone without disability takes for granted. This person requires help to get out of bed in the morning, to be dressed and showered and to eat, although an electric wheelchair offers a level of independence during the day. Ramps and handrails allow as much freedom at home as possible. This person lives in a tiny town more than an hour out of a major regional hub. They are visited four days a week by two LiveBetter staff, who travel the two-hour round trip to provide some personal care services. This customer is afforded 48 hours a week of service under their Core

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Supports section of the National Disability Insurance Scheme (NDIS) package – 16 of which are chewed up by travel costs. LiveBetter has tried on several occasions to recruit staff in the customer’s small town, but have failed to find a single applicant. Maximum funding for transport per annum through the NDIS is $3,456 which, according to the Australian Department of Human Services, is available for people “currently working, looking for work, or studying, at least 15 hours a week, and are unable to use public transport because of their disability”. Such an allowance might be enough for people living in areas with access to cheap transport, but at less than $290 a month – as a maximum entitlement – LiveBetter’s customer is severely starved of choice. The only buses available to take passengers from the regional town to remote areas are not capable

mean the services offered to those individuals naturally mirror the decrease in population. He believes the distance between rural and remote customers and service providers is one of the most significant problems yet to be ironed out as the NDIS scheme finishes its NSW rollout. “You’re simply dealing with a lower population base – ergo, there’s not so many organisations servicing. The larger regional centres – 40,000 up to 100,000 populations – are quite well serviced but the small townships find it difficult. The people who live outside of townships find it really hard,” Bonney says. “Once you go to smaller regional and then into the rural and then into the remote, there’s obviously less and less service providers, so there’s less and less services offered. The impact of this is that although the NDIS is about choice, the fact is that if there aren’t services being

The impact of this [lack of service providers] is that although the NDIS is about choice, the fact is that if there aren’t services being offered then you don’t really have much choice. of transporting someone in a wheelchair, so this person is afforded one taxi trip per week at a cost of $270. They currently use this weekly trip to run personal errands and socialise with family members, who live in the relatively major area. Even if employment in the major regional town was on offer, this customer’s entire weekly transport allowance would be used up in an effort to work a single shift. Senior Manager, Corporate Communications at LiveBetter, Marc Bonney says the decreasing populations that exist the further one goes out from regional centres

offered then you don’t really have much choice. “When you’re travelling significant distances then transport is very, very expensive and you could eat up your highest level of NDIS transport funding in a couple of trips – it’s certainly not enough to sustain you on a weekly or monthly basis. “There’s a lack of services, they’re not where you are, it’s hard to get to where they are. And then it’s hard to get staff and certainly hard to retain staff. Forget full-time employment, staff may not even get what would be considered reasonable part-time hours.”

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While video – albeit via the internet – can offer a customer a level of social interaction, it allows a service provider to receive more information as to a customer’s health than what that customer might simply say. While LiveBetter operates in regional and rural NSW and Queensland, these examples reflect the issues for rural customers nation-wide. Any potential solution to issues of transport in rural areas are more complicated than simply increasing funding to those in need. Certainly, more money would make it financially possible to travel the vast distances to the small number of service providers; however, that would still mean customers or staff members are spending large chunks of their weeks in cars or buses. It is hardly ideal. Bonney insists meaningful solutions

could only be found by listening to those with the problems. “The first part is to listen to people in rural areas, ask them and listen to their answers,” Bonney says. “Neither agencies nor companies should come up with policies, services or strategies when they haven’t asked people who are going to be impacted as to what’s going to work for them. Certainly that consultation is a key part to it.”

A PROBLEM OF RESOURCES AND FUNDING The speed at which the government

has attempted to rollout the NDIS nationally has meant goalposts have had to shift as complications arise, resulting in a strain on resources. Some of the prices in the NDIS price list are inadequate to deliver those services to people in a manner which would make them valuable. Every one of these issues, which are big issues for the entire disability sector, is then accentuated when you are living in a regional area, and more so when you are living in rural and remote areas. If increased funding could only form part of a solution to the problems of distance for people with disability in rural Australia, technology could also play a role. Technology has indeed played its part in making Australia a smaller place over the years – School of the Air, for example, began in 1951. In recent years, those lessons have switched from shortwave radio to

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video feed – and video services are sure to play an increasingly important role in health monitoring. LiveBetter is currently investing substantial resources in such technologies in the hope that video feeds and video conferencing can help deliver customers with otherwise unavailable face time with healthcare professionals. While video – albeit via the internet – can offer a customer a level of social interaction, it allows a service provider to receive more information as to a customer’s health than what that customer might simply say. “Health is a key thing for anyone, but you’ve got people living in remote areas and they can’t get to see their GP very often. So we can use remote health monitoring – they can take their blood pressure daily and record it in the system. We’d then have a nurse sitting 500km away, 1,000km away, who can be looking at their

vital signs readings on a daily basis,” Bonney says. “You can also do video conferencing, which adds that faceto-face time which is obviously so important socially as well as from a care perspective. Again, our staff can then see how the customer is looking – are they looking thinner, or dark under the eyes, has their living space changed considerably since the last time they spoke? All these things can be used to then assess a customer’s state of well-being.”

NDIS FUNDING FACILITATING INDEPENDENT LIVING Although some problems regarding NDIS funding remain, the rollout of the new system has undoubtedly helped others find a level of independence that was previously just a dream. Many people living with disability searching for more accessible housing have found

answers through the NDIS and for three LiveBetter customers in Wagga Wagga, this has also meant the possibility of living closer to family and friends. While distance between customers and service providers is a genuine problem due to the travel involved, accommodation is just as important. Kirsten Michael had lived in a group home about 90 minutes out of Wagga, away from family. Her living arrangement meant they were afforded care onsite – there was no need to travel every week to Wagga for care services, but the distance from family and the lack of independence was frustrating. Like so many other young Australian women, Kirsten wanted to live with friends – in this case two other women she had known for 15 years or so: Kellie Parker and Michelle Hockings. Kirsten had been on a waiting list for a home in Wagga for

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ENABLING REAL CHOICE FOR PEOPLE LIVING WITH DISABILITY I t is safe to say there are particular issues around health care for people living with a disability that are more acute and compounded for rural, regional and remote communities. The demand for disability services under the NDIS, tyranny of distance, social isolation and a lack of transport rendering people reliant on others to get to medical appointments, are just a few. With these issues in mind, LiveBetter, in partnership with Philips Healthcare, is piloting an innovative remote health monitoring system (RHMS) to support and improve the quality of life of people living with disability and chronic illness in rural, regional and remote communities. The system uses technology and daily health monitoring for early detection and illness prevention, resulting in better health outcomes for the individual, along with a reduction in hospital presentations, reduced visits to a GP and peace of mind, particularly for carers. A similar pilot in Queensland resulted in a 53% reduction in emergency department presentations over a two-year period, creating huge savings for the economy. LiveBetter’s Remote Health Services lead Ben Chiarella says one of the main goals of the service is to give people back control of their health and wellbeing. “The impact of this is that it allows people to live longer independently in their own homes,” he says. Daily results, including blood sugar level, heart rate, blood pressure, weight, temperature and more, are securely transmitted and reviewed by a registered nurse located in LiveBetter’s clinical hub, which tracks and monitors to determine if there is any variation in a customer’s health. A follow-up call for further assessment is then made if a change is noted.

A registered nurse is also able to communicate via a video call, providing health coaching, guidance and links to a customer’s general practitioner, specialists and carers, with another advantage of the system being it is a portable health record, allowing people to travel and take the system with them. “The service has no boundaries, allowing people with a disability to go on holidays knowing they have their registered nurse and GP supporting them wherever they are in Australia,” says Chiarella. LiveBetter Pilot participant Ron has multiple chronic conditions including congestive heart failure, chronic obstructive pulmonary disease, hypertension and anxiety that impact on one another, resulting in frequent hospitalisation and GP visits. After six months using RHMS daily, he has seen a significant improvement in selfmanagement and health literacy, and a

subsequent reduction in anxiety, social isolation and hospital presentations. The impact on his quality of life has been significant and he can now travel to visit family knowing he can manage his conditions while away. LiveBetter has developed three different service offerings, depending on a person’s needs and journey through the disability and ageing process. The service will be invaluable to those living in the country, and could be used in supported accommodation, community groups and independently from wherever the person lives. n

The RHMS will allow people to have more control over when and how services are delivered to them and for carers to make more informed caring decisions. For more information about LiveBetter’s RHMS, please contact Ben Chiarella on 1800 580 580.


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four years and, tired of waiting any longer, her parents teamed up with LiveBetter to change the situation. With the support of LiveBetter and the NDIS, Kirsten, Kellie and Michelle were able to have a home purposely built to suit their physical needs. The hallways and doorways are wider to allow wheelchair access, sliding doors open at a touch rather than having to physically slide the door open, and there is the ability to also have 24hour onsite care. Like any person – living with disability or not – independent living is crucial to quality of life. The level of independence achievable obviously varies from individual to individual, but regardless of the sector – be it transport, housing or in the workplace – independence is key. It is little wonder then that LiveBetter Regional Manager Disabilities Murrumbidgee, Ryan Quarmby has seen a significant improvement in the girls’ ability to take control of their own lives. “Their goal is to live independently and live together… the change in the girls from being more independent and being able to cook and just running their lives [is remarkable],” Quarmby says. “One of the really great achievements that we’ve seen from Kristen, Kellie and Michelle has been their ability to make meals together and it’s something that they haven’t had a lot of skills for in the past. [Their] independence has really grown through moving out. “We support the process but it’s their house.” The NDIS and LiveBetter supported the build and supported the process of the girls moving into their new home, but Kirsten’s parents played an enormous role – particularly financially – in allowing this project to be undertaken. Appropriate and accessible housing remains perhaps the greatest issue for people with disability in Australia, not just in rural and remote areas but in the country’s capital cities as well. The story of Kirsten, Kellie and

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Neither agencies nor companies should come up with policies, services or strategies when they haven’t asked people who are going to be impacted as to what’s going to work for them. Certainly that consultation is a key part to it. Michelle is a great one, but there are countless others who are not so fortunate and have not been able to find the level of independence that these women have. Specifically for people living outside of capital cities, it is distance that is the cause of so many issues. Capital cities are naturally well equipped with care services as it is where two thirds of Australia’s population live. But the further from the capitals one travels, the fewer services remain available to the point where customers or carers are travelling large distances to access any kind of support. When payment for that travel is unsustainable, the customer is at risk of being left behind by the system and their quality of life will then quickly deteriorate. Technology can play and is already playing a serious role in limiting the

effects of distance. Through video calling, remote customers are able to speak to a service provider face-to-face without spending the bulk of their travel allowance in a single trip. Video technology and remote monitoring also allow care givers in more urbanised environments to track the progress of those living many hundreds or even 1,000km away. But in order to truly solve these issues and ensure every Australian, particularly those living with disability, is cared for appropriately, people in charge of deciding policy and strategy must listen. Consultation is key in any walk of life and it is no different with rural Australia. The challenges faced by people living away from major hubs are unique and for people living in urban environments, these challenges are sometimes very difficult to anticipate. n

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FOSTER CARE

SUPPORTING THE TRANSITION FROM CARE TO INDEPENDENT LIVING

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FOSTER CARE

After spending many years in foster care, Sally represents a small but important demographic of care-leavers who require high-level care in order to live independently and contribute positively to the community. By Harry Thring.

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ally was just 16 years old when she was reported by police as being abandoned and without adequate adult care. Diagnosed as having an intellectual disability, ADHD, epilepsy and asthma, at 18 she was described as being incapable of making informed decisions or of possessing the skills required to live independently in the community. There also existed a level of concern surrounding her self-care capability as well as her self-awareness. However, with the help of Key Assets’ ability carers and the provision of a safe and stable home environment, Sally has made remarkable progress in recent years. In 2017 she decided to try and reconnect with her family. A counsellor helped her prepare for the visit and she identified her hopes, dreams and fears surrounding it. The experience assisted Sally in dealing with her childhood trauma and begin to rebuild those family relationships. On the back of this heightened independence, Sally accessed an independent advocacy service to help her settle a work grievance. Now 23 years old, Sally has disproven all doubts surrounding her decision-making ability. She is currently studying a Cert IV in beauty therapy at TAFE, works at a sheltered workshop three days a week and volunteers at a cat haven on one of her days off. She is involved in a community netball group and has added karaoke to her repertoire on Friday nights. Sally has even expressed a desire to one day live independently – a huge step and one that speaks volumes for her improved confidence.

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A DIFFICULT TRANSITION Having spent her late teenage years in foster care, Sally represents a small but important demographic of care-leavers who require high-level care in order to live independently in a community and contribute positively to that community. It is

Care-leavers represent a particular area of risk. They are likely to have an experience of trauma and need well trained and supported carers and staff to work with them and understand them. also common that as a young person transitions away from foster care, issues develop. Transition from teenage years to adulthood is a testing time for any individual, regardless of whether that person lives with or without disability. However, the stresses of transition are multiplied when coupled with leaving foster care and multiplied again when that young person is also living with an intellectual or physical disability. Sally’s story appears headed for a happy ending – but many stories that begin in similar circumstances to Sally’s do not end as well. Depending on the history of the individual and possible trauma previously sustained, or depending on the type of

disability a care-leaver lives with, this demographic faces a heightened postcare risk of extended hospitalisation, incarceration or homelessness. Given the risks involved with leaving care, director of Key Assets Western Australia (a not-for-profit and nongovernment foster care and disability services agency) Judith Wilkinson believes young people should have the option of remaining in care beyond an individual’s 18th birthday (when they are legally considered an adult) until 21 or even 25 years of age. Wilkinson says the abrupt transition out of care can exacerbate the development of mental health issues that may not have been identified prior to the transition. The key to a successful transition then is to prepare an individual for their future. Key Assets advocates working with young people from 15 or 16 years old, before they are due to transition out of care, in order to develop a game plan and identify goals and points of focus for that individual. “We’re learning a lot about this particular group of care-leavers who have really high incidents of significant mental health and psychosocial problems – some of which they didn’t exhibit when they were in foster care. This transition into adulthood, and the implications of not being in care anymore, are really overwhelming,” Wilkinson says. “Most children who come into care have suffered significant trauma and for kids with disability, often their disability may be well attended to but their trauma isn’t. So when these young people turn 18, they’ve got their disability to cope with, leaving care, adult life and often this unresolved trauma. “These young people of course have huge potential, so you’ve got to be able to maximise their chances of reaching that potential. Good planning is essential and it takes a long time, getting to know the individual and understanding their hopes and aspirations.”

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The abrupt transition out of care can exacerbate the development of mental health issues that may not have been identified prior to the transition. A TEAM EFFORT It also takes a team of skilled carers and support workers who know the individual closely. Wilkinson says that if the young person is in foster care, the carer and family is usually best-placed to provide support and insight when designing and implementing a transition plan. The young person’s birth family might also contribute. But she adds that it was also important to look outside the family – perhaps there is a teacher who could help, or a sport coach. Wilkinson says it was ultimately up to anyone who knew the care-leaver well to contribute.

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However, such a plan must always be developed in association with the individual at its centre. “The people who know them the best is the family they’re living with, and at that age it is essential to involve the young person themselves in planning for their own future. It’s the balance between giving them as much control as possible in the decisionmaking and in the planning, and what is actually possible, both in terms of their own capabilities and in terms of what’s available for them,” she says. “It’s always a team effort – it has to be. Everybody who knows that

young person well has their own contribution to make.” There remains no government regulation surrounding who is able to care for a person with disability and while the vast majority of carers provide incredible and staggeringly valuable service, the risk remains that a person with disability might not be treated with such a level of care. Wilkinson questions who would protect those unable to speak for themselves due to a physical or intellectual disability if they receive poor care. Although highlighting the risks involved with a lack of regulation, Wilkinson also insisted there remains a huge number of people and families providing brilliant care. A lack of formal qualification does not mean a lack of welfare. Wilkinson is not trying to imply abuse in the industry is rampant – on the contrary, she insists there


FOSTER CARE

were many people who were not formally qualified as carers but who delivered superb care. She is also aware that over-regulation has the potential to make the process of becoming a carer so complicated that it deters people from wanting to open their homes and their hearts. “But care-leavers represent a particular area of risk. They are likely to have an experience of trauma and need well trained and supported carers and staff to work with them and understand them, so they can form healthy relationships, manage their anger and cope with conflict,” she says. “Another challenge is that the disabilities of the young adults we work with aren’t visible. They are cognitive and behavioural. They might have a psychosocial disability, some degree of autism, some degree of learning disability

but they’re articulate and have definite ideas about how they want to live their lives. But they can also behave in ways that are really hard to understand unless you know what’s happened to them – that they haven’t, for example, grown up trusting people. They might identify certain situations as being really threatening that other people don’t – that’s what trauma can do. “These are the sorts of things carers and staff need to be able to understand and respond to.”

BUILDING A FOUNDATION FOR INDEPENDENCE The potential risks and problems in guiding a young person out of care and into adult life are indeed plentiful. Issues of past trauma combined with disability make the process even more demanding, but the stories told by organisations like Key Assets serve as proof of the

Making a positive and lasting difference to children, young people and their families. Key Assets is committed to walk alongside individuals to achieve their potential and own their place in the community. To find out more about how we can support you to be the best version of yourself, contact Key Assets on 1800 WE CARE or visit www.keyassets.com.au

benefit of providing safe and stable home environments as a foundation for transitioning to more independence. 
Open dialogue is also key in identifying a care-leaver’s aspirations – both immediate and those on the horizon. Conversation between care-leaver and social worker or foster family will go a long way in smoothing the transition process as they leave foster care and begin a more independent living arrangement. Smoothing that transition is crucial in preparing a young person for adulthood. An abrupt and jolting transition from family care to independent living is fraught with risk, regardless of the individual’s circumstances. But when that person lives with an intellectual disability and has perhaps suffered past trauma – those risks are magnified significantly. n


Q&A WITH

ROSS JOYCE

CEO, AUSTRALIAN FEDERATION OF DISABILITY ORGANISATIONS

The Australian Federation of Disability Organisations (AFDO) represents a diverse range of organisations. How would you describe its overall mission as it seeks to represent members and stakeholders and advance the disability services agenda? AFDO has a bold vision for the equal inclusion of all people with disability into all aspects of social, economic, political and cultural life. It aims to achieve this through its mission by utilising the strength of our unique membership to harness the collective power of uniting people with disability to create an equal and inclusive society. What are some of your current priorities, in terms of projects and policies? There are always a large number of issues to be tackled and we ensure that we take into account our members’ views in developing policy priorities. This year’s focus is on four main areas for people with disability, their families and carers, being: 1. Justice 2. Inclusion 3. Violence abuse & neglect 4. Transport

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In addition, we continue to ensure that the National Disability Insurance Scheme (NDIS) roll-out is delivering on its promise to people with disability. We are focused on the next 10-year plan for the National Disability Strategy and how we can ensure that outcomes and monitoring of achievement across all governments is best tackled. As well as the sustainability of AFDO and all of its membership, to continue to represent and provide systemic advocacy on behalf of our unique communities, we are tackling projects involving: • Understanding the NDIS, for potential or current participants. This is currently across Victoria during the NDIS rollout and we plan to offer this across other states/territories. • Building the capacity of community organisations nationally to participate in the Information Linkages and Capacity (ILC) funding rounds provided by the NDIS. • Building the capacity of small business (20 to 200 employees), to be able to tap into the business benefits of a more diverse workforce. Tailoring an approach for each individual business that will help them to become more confident, welcoming, employer ready and accessible for people with disability. You made some comments on the funding of the NDIS last year. How do you believe the service is tracking and are you confident it can deliver the standard of service the community needs? What more needs to happen for it to achieve this? AFDO is fully supportive of the NDIS and won’t support any change to the planned rollout as people with disability have waited long enough. There have been issues, which are being continually

worked on, but there have also been some fantastic results for the lives of people with disability which must also be acknowledged. We want to see a clear and transparent plan from the federal government for the ongoing funding of the scheme which is not restricted to the ups and downs of the annual federal budget cycle. People with disability deserve certainty as this is an essential scheme that will support the lives of 460,000 Australians. It will also be there should any Australian be born with or acquire a disability into the future; this is world breaking and protects all of us. AFDO plays a key role in ensuring that the scheme will deliver on its promise to people with disability. We take this responsibility seriously and continue to assist in providing feedback and positive suggestions for improvements to the rollout, as well as alerting the NDIS to any systemic issues which arise within such a complex initiative. A key issue for the National Disability Insurance Agency (NDIA) in implementing the scheme is the significant restrictions which have been imposed on its resourcing, both staffing and other from the Department of Social Security and the federal government. We continue to support and call for a lessening of these restrictions to ensure that the NDIA can respond quickly and flexibly in deploying solutions to issues as they arise. This just makes sense in terms of the scale of the change which is being rolled out nationally. You have also been very vocal about the abuse of people with disability. How much of a problem do you think this is and what kind of abuse were you referring to? We know that the abuse and neglect of people with disability in all settings is systemic and ongoing. This has been

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well documented through inquiries, hearings, reviews and reports over many years across multiple jurisdictions and the change is? The abuse relates to physical, sexual, emotional, financial, psychological and is particularly targeted against people with disability who are elderly, or women, or girls. Why is a Royal Commission the best response to this? The abuse and neglect of people with disability, some of the most vulnerable people within our community, is shameful and totally unacceptable. AFDO has long demanded a Royal Commission to spotlight this serious offending and to put this front and centre with the Australian community, to allow those affected to tell their stories, to reveal those perpetrating or ignoring this abuse and to ensure that we take all the necessary legal, structural, community and appropriate steps to ensure this is finally ended. There should be nowhere to hide. The Royal Commission carries the authority required and is the correct mechanism to ensure that justice is finally provided to people with disability for these systemic, shocking offences, and that action is finally taken, this tragic abuse is acknowledged nationally, and it is finally brought to an end. Turning to some key areas of disability policy, how is Australia performing in terms of getting people with disability into employment? What more needs to be done in this area? Sadly, the percentage of people with disability participating in employment has not moved for

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the last 30 years and has actually gone backwards! Those aged between 15 and 64 years have both lower participation (53%) and higher unemployment rates (9.4%) than people without disability (83% and 4.9% respectively). This is despite government initiatives and changes being undertaken and still tweaked over the many years. We need to reimagine and involve people with disability, and provide new ways to tackle this trend and ensure that the contribution that they can bring is truly valued and fully included into all our workplaces. Education is another critical policy and service area for people living with disability, and the idea of inclusion is still, for some people, controversial. What is ADFO’s policy on this and how do you score Australia’s overall performance? AFDO has a firm policy and stand on the provision of an inclusive education system for all children, young people and adults. We do not support any form of segregation, including in the delivery of education, and see any type of segregation as exclusionary, contrary to best practice from world educational studies and in total contradiction to the UN human rights charter, of which Australia is a signatory. Are you happy with our Commonwealth/state funding models for disability services? How might they be improved? I believe it is still a mixed funding result for disability services. This has been complicated, as whilst the federal figures are relatively straightforward and related to their share of the NDIS and other disability supports such as the Disability

Support Pension, etc., this isn’t the case with the states and territories. Some have worked on the misunderstanding that the NDIS bi-lateral agreements mean that the federal government will take on a greater share of the disability services than those covering NDIS participants, which is not the case. This has been demonstrated by some prematurely withdrawing from disability services or withdrawing existing funding of their state/territory’s own services. If you could choose three projects or policy decisions you think would impact most positively on the status of people living with a disability right now, what would they be? The areas where I believe we could make the greatest impact would be: • Reimaging and fresh approaches to the employment into mainstream roles across the entire business/ service sectors • Adoption of universal design principles for all new buildings, facilities and infrastructure across Australia • Funding ongoing inclusive practice and awareness training across the school system, government, community, health, service and business sectors What do you aspire to achieve during your tenure? Raising our profile as the ‘go to’ national organisation along with membership that provides respected, evidence-based, systemic advocacy, policy, commentary, reports, reviews, projects and consultancy in achieving greater understanding of disability and specific disability issues covering our unique and diverse communities across Australia. n

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PEOPLE WITH DISABILITY IN THE CRIMINAL JUSTICE SYSTEM AND ACCESS TO THE NDIS I t seems hard to understand why people with disability are so overrepresented in our jails, yet it is a fact. Currently people with disability form 18% of the Australian population but make up 50% of people entering prison. The statistics are staggering: 37% of the prison population in Victoria have an acquired brain injury. In a juvenile detention centre in Western Australia, 39% of the young people detained there were diagnosed as having foetal alcohol syndrome disorder. Up to 150 people with a cognitive impairment across Australia are indefinitely detained in jails, despite not having not been convicted of a crime. In the Northern Territory, people with disability are indefinitely detained in maximum security jails. Up to 80% of prisoners in the Northern Territory have a hearing impairment.

Indigenous Australians with disability, particularly Indigenous woman with disability, are even more vulnerable with up to a third of people with disability detained in prisons being of Aboriginal and Torres Strait Islander descent. Across Australia, thousands of people with mental and cognitive disability are being ‘managed’ by criminal justice systems rather than being supported in the community, a disproportionate number of them Indigenous (Baldry & Dowse 2013). Recently, Human Rights Watch (HRW) released a report, “I Needed Help, Instead I was Punished: Abuse and Neglect of Prisoners with Disability in Australia”. HRW reported, “Prisoners with a psychosocial or cognitive disability can spend weeks or months locked in solitary confinement in detention, or crisis or safety units, for 22 hours or

Patrick McGee National Manager - Policy, Advocacy & Research

more a day. Human Rights Watch found that prisoners can spend years in prolonged solitary confinement in Maximum Security Units (MSU); one man with a psychosocial disability has spent more than 19 years in the MSU.” An example of the type of life people with disability live when they are involved with the criminal justice system is highlighted by Ms J: Ms J lives a life that regularly involves detention in a jail for minor crimes. Ms J is an Indigenous woman with foetal alcohol syndrome disorder (FASD). Extremely resilient, Ms J lives in a regional town with limited support systems for people with disability. Ms J is caught in a vicious cycle where she does not receive that specialist support she needs but also does not want. This absence of support leads to a cycle where Ms J is vulnerable to physical and sexual abuse of a horrific nature. Her drug and alcohol use is accompanied by violent behaviour which periodically places her and others at extreme risk. Her behaviour brings her to the attention of police which often ends in her detention in a maximum security prison. Since her return to this town from another state (where she was detained indefinitely on minor charges), Ms J has spent over 50% of her time detained in the jail. Whilst in jail Ms J can spend a considerable amount of time in solitary confinement in order to manage her behaviours. Ms J never spends more than three to six months in jail but also never spends more than three to six months out of jail. Disability Support offered through the National Disability Insurance


Scheme (NDIS) is the first real opportunity to break the cycle that Ms J is caught in and offers people the chance of a dignified life. Disability Support to Ms J would allow for expert assessments that inform how to best provide the support she needs and access to cultural support from her community that builds her sense of community. NDIS Disability Support could be used to teach her how to communicate without using violence and it could provide her with the opportunity to learn new skills, possibly decreasing her drug and alcohol use. However, NDIS Disability Support for Ms J when she is in prison is unlikely at the moment. Until quite recently, the NDIS believed that the responsibility for people with disability in the criminal justice system lay with the criminal justice system. Similarly, the criminal justice system believes that the responsibility for people with disability in the criminal justice system lies with the disability system. As you might expect, the NDIS generally believed that if people went to prison, including people with disability, they forfeited their citizenship rights such as access to NDIS Disability Support – a not unreasonable assumption in the circumstances given that people in jails lose the right to vote and the right to access Medicare. Of course, the situation for prisoners with disability is more nuanced than that. Naturally, this assumption led to confusion about whether NDIS Disability Support could be provided if people with disability were in prison. It was also unclear how Disability Support could be provided to people with disability in prison. In 2015, the NDIS updated its Justice Interface Principles. The Justice Interface Principles outline which system is responsible for responding to which need in the space between disability and justice. The 2015 Justice Interface Principles allow for certain types of Disability

Support such as behaviour therapy, support coordination and aids and equipment to be provided to people with disability in prison, even if they are on remand. However, generally speaking, things remain confused, resulting in different practices emerging in different NDIS regions. People with disability in some prisons are being made eligible but

Until quite recently, the NDIS believed that the responsibility for people with disability in the criminal justice system lay with the criminal justice system. no plan is developed or implemented. Other NDIS regions provided Disability Support only in the last six weeks of their detention to help them connect with a community support agency. In the face of such significant need, this confusion is a significant barrier to the provision of Disability Support. In 2017, the NDIS Joint Standing Committee inquired into the provision of Disability Support for NDIS participants who were detained. The Committee made three recommendations to the NDIS: 1. Clarify the Justice Interface Principles, 2. Set up an NDIA Criminal Justice Unit, and 3. Develop a specific Aboriginal and Torres Strait Islander Strategy to respond to the specific needs of Indigenous Australians with disability. None of these recommendations have yet been implemented. In late 2017, NDIA CEO Mr De Luca met with disability justice advocates and academics on the back of the Senate Inquiry recommendations. Mr De Luca unequivocally stated that people

with disability who were detained in prison were entitled to receive NDIS Disability Support. Mr De Luca accepted that people with disability in prisons needed the Disability Support provided by NDIS. It was agreed that NDIS Disability Support could help people with disability exit detention and also prevent detention through early intervention support. As the NDIA responds to the needs of people with disability who are living with complexity, it is trying to build its response to people with disability in the criminal justice system. It is unclear at this point how it intends to do this. A clear statement from the NDIA on how it intends to provide Disability Support to people with disability in prisons is needed and a set of national practice standards for agencies working with people with disability involved with the criminal justice system needs to be developed. In the face of such damning statistics mentioned at the beginning of this article, a coordinated, well resourced response by the NDIS for people with disability in the criminal justice system is crucial. Such a response would lend itself to helping reduce the overrepresentation of people with disability in jails, and importantly, Aboriginal and Torres Strait Islander people with disability in jails. The impact on people with disability in jails is dramatic and it leaves people with disability scarred for life. The NDIS providing a coordinated and well-managed plan for a person with disability can avert this negative experience through early intervention and provide support and a pathway back to community for people with disability who are detained. n Patrick McGee National Manager – Policy, Advocacy & Research Australian Federation of Disability Organisations


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TRANSPORT

ON THE MOVE One area of disability services that has made significant gains in recent years is transport and mobility. By Lachlan Colquhoun.

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new generation of vehicles, devices and accessories has come on the market, while at the same time public infrastructure in the community, often driven by the requirements of the Disability Discrimination Act (DDA), has become more accessible. While the DDA sets standards of accessibility that new buildings and transport operators must comply with, policy makers are thinking beyond basic compliance to the current Disability Standards for Accessible Public Transport, originally introduced in 2002. The Minister for Infrastructure and Transport, Darren Chester, released a report in December 2017 whose title encapsulates the new approach and aims to create seamless journeys for public transport accessibility. It is called the “Whole Journey: A guide for thinking beyond compliance to create accessible public transport journeys” and forms part of the government’s response to a review of the implementation of the standards. The guide provides guidance on how transport planners and providers, architects, engineers, builders and all levels of government can work together to deliver the “whole journey”

NATIONAL DISABILITY OUTLOOK 2018

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The Seacliff Surf Living Saving Club added a floating wheelchair, following a $5,000 grant. Club president Andrew Chandler says the chair had given some people their very first experience of swimming in the ocean. improvement to public transport accessibility. It urges universal design considerations in infrastructure planning and a “human-centred vision” which brings “whole journey thinking” into the mainstream of planning. A key driver of change is innovation and technology, and the report recognises that “on demand” transport services such as autonomous vehicles present as one future solution. “Future transport on-demand services will also make journeys more accessible,” the report says. “Coupled with first-mile, last-mile connectivity that is currently operating elsewhere in the world, a shift in the balance

between set services and flexible transport on-demand options can be expected.”

MORE ACCESSIBLE LEISURE ACTIVITIES Other advances in access have been in leisure. Examples of this are the development of several beach ramps that have enabled people with disabilities to enjoy some of Australia’s best beaches. Douglas Shire Council in Far North Queensland, for example, has completed a ramp at Four Mile Beach near the beach’s surf club. In South Australia, an accessible

mat was rolled out in early 2016 at suburban Seacliff Beach, just in time for the hot Adelaide summer. The Seacliff mat was so successful that in 2017 the Seacliff Surf Living Saving Club added a floating wheelchair, following a $5,000 grant from the state government. Club president Andrew Chandler says the chair had given some people their very first experience of swimming in the ocean. “Once we got the disability access mat in last season, we looked at what other opportunities there were to provide a better service for the community and this was a suggestion that came from our members,” he says.

ACCESSIBILITY INDUSTRY GROWING RAPIDLY While planners are creating a more accessible urban infrastructure, a vibrant industry offering innovative mobility solutions has developed rapidly.

HINO PONCHO: THE SMART COMMUNITY TRANSPORT SOLUTION

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small-sized bus ahead of its time, the Hino Poncho is fully compliant with the Disability Discrimination Act, four years ahead of its full implementation in 2022. “With an ultra-low floor design with kerb kneeling function, a portable wheelchair ramp and a dedicated wheelchair space inside, the Hino Poncho is proving a popular choice for community groups and bus operators alike,” said Hino Product Strategy Manager Daniel Petrovski. “Wheelchair boarding can take less than a minute - compare this to a traditional small bus in which wheelchair access can take up to 20 minutes and you can see why the Hino Poncho is proving to be a superior solution to what is already available,” he continued. The Hino Poncho measures under 7 metres in length and features a tight turning radius, making it a highly manoeuvrable and innovative community transport solution for aged care providers, schools and universities. Key safety features include three emergency exit points, a comprehensive field of vision, air-overhydraulic brakes with ABS and an infrared nightvision enabled reverse camera as standard.

For added safety, the large 850mm sliding door features sensitive touch technology and sensors near the entrance which stop the door from closing if there is an obstruction. An additional safety feature is that the door is prevented from opening until the ‘park’ gear is selected, and the drive positions can only be selected once the door is fully closed. “Specifications such as these were part of why the Poncho was chosen by Brisbane company Clark’s Buses for its Logan city route, which it operates on behalf of Translink, the Queensland Government’s public transport division,” said Mr Petrovski. The Poncho comes with a three-year, 100,000km warranty, whichever comes first, as part of the Hino Advantage suite of business benefits. For more information, go to hino.com.au For further information, please contact: Clare Arthurs Account Director Media & Communication Services clare@mediacomservices.com.au Ph: (03) 9226 6666 Mobile: 0435 898 644


TRANSPORT

Liam Calvert from Pride Mobility Products says that people with disability are now doing more independent travel out in the community than they have ever done before. “Just think about the improved battery technology for a start,” says Calvert. “Lithium battery technology in scooters has been a huge game changer. “Some scooters are getting 25km out of a single charge, and this is double what it was a decade ago.” So not only can people of disability with scooters travel further without needing to recharge their batteries, they are doing so in greater comfort. Another feature of the new generation of mobility products is they can be easily modified and accessorised with add-ons such as chargeable USB ports and also with Bluetooth, through which the user can control aspects of the immediate

environment such as air conditioning, lighting and audio visual entertainment. “The whole mobility segment has undergone an evolution,” says Calvert. “Aside from design, it is the power of choice which has cemented itself in terms of research and development and product innovation. “In years gone by, mobility products were seen as medical tools, but now thanks to features such as LED lighting, Bluetooth connectivity and also storage options, mobility products have become items for accessorisation and customisation.” Pride is a subsidiary of a US firm and operates across both Australia and New Zealand. While the bulk of the products, such as the mobility scooters, are manufactured in the US and imported, Pride does manufacture and assemble more complex products and mobility aides in Australia under the Quantum brand. Quantum offers a range of

power chairs and lift chairs that are more specialised and can be individually customised for people with special needs. These chairs also have integrated Bluetooth technology so users are able to connect to aspects of their immediate environment. “These products are really changing the lives of the people who use them,” says Calvert. “They are a necessary purchase in most cases, but with the amount of extras and inclusions these days, they can be personalised, and in some cases they have some quite luxurious features.” In one client testimonial, a woman who lost the use of both legs received one of the company’s chairs for a test drive. “I didn’t realise how advanced mobile technology had become,” she wrote. “Once I saw it, I became a believer that function and fashion could co-exist!”

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TRANSPORT

In years gone by, mobility products were seen as medical tools, but now thanks to features such as LED lighting, Bluetooth connectivity and also storage options, mobility products have become items for accessorisation and customisation. TAILORING VEHICLES TO SPECIAL NEEDS Chairs and scooters are not the only mode of transport for people with disability; many use cars either as drivers or as passengers, following some vehicle modification. A leading provider in this space is the NDIS-approved Brazier Mobility, which specialises in wheelchairaccessible vehicle conversions. Brazier’s motto is “Creating Independence for Over 30 Years”, and it offers a range of services from vehicle conversions and modifications through to emergency service and general repairs. Conversions are offered not just for personal vehicles but also buses, vans and accessible taxis, and a hire service is also available. Brazier also sources buyers for used modified

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vehicles on behalf of clients. In a business of this kind, the proof of success is in the customer testimonials, and Brazier can point to many first-hand accounts of the transformative impact of its work. “The ‘hand controls’ and ‘special lifter’ which lifts my wheelchair in and out of my car is simply life changing,” wrote one client, simply leaving his name as ‘Dennis’. “Thank you so very much for giving my independence back to me.”

A WORK IN PROGRESS FOR GOVERNMENT In the regulatory and public policy context, improving transport services, mobility and access for people with disability is an ongoing work in progress. Recognising this, the government undertakes periodic

reviews of the Disability Standards for Accessible Public Transport, with the last review completed in 2012, and a draft report released in May 2014. Public submissions from individuals and advocacy groups were invited. The government response in 2015 noted that although most compliance targets had been met by providers and operators, the targets calling for public transport systems to be up to 90% access “may be difficult to achieve unless significant resources are found”. “The government recognises that some parts of the Transport Standards may not be meeting the current and future needs of people with disability or provide sufficient flexibility or guidance to providers or operators,” the government response says. One recognised issue is that there is no national framework for reporting on progress on the Transport Standards, and the government announced in-principle support for a national reporting framework, although it warned that additional reporting could add existing compliance costs to operators. Reducing “red tape and compliance costs” is a key focus of government concern, as the review notes that the lack of resources, to local government in particular, is hampering progress. States operating older legacy assets faced major backlogs of work in upgrading these to the requirements of the Transport Standards, while local government was bearing much of the responsibility. While it had the “best intentions” to improve accessibility, local government was bearing “a large part of the burden” for implementing infrastructure despite “little or no financial assistance”. The challenge is to redress these issues and continue to ensure that progress is made not just towards compliance, but in making the “whole of journey” more accessible for people with disability. n

NATIONAL DISABILITY OUTLOOK 2018


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ASSISTED TRAVEL

TRAVELLING WELL AFTER THREE DECADES Originally created as an alternative to traditional respite, Holiday Explorers has evolved into being so much more. By Lachlan Colquhoun.

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hen Holiday Explorers went through a rebranding exercise a few years ago, it held a focus group meeting and asked the people who used the service what the organisation meant to them.

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“More than a holiday” was the overriding essence of what it meant to the adults with intellectual disability and their families and carers. As a result, this tagline or motto became an integral part of the Holiday Explorers logo and branding. “Travelling is just one part of the experiences we provide,” says Lisa Albinus, the Executive Officer at Holiday Explorers. “If you look at what we do, we are teaching travel skills, and for many of our clients or tourists that is all about acquiring the life skills needed to be able to do the things they want to do. “That means doing things like planning, booking and finding places to eat, packing for a different climate or reading a train timetable or a map so they can get around in a new city.”

In 2018, the Adelaide-based organisation celebrates 30 years of providing travel experiences for people with intellectual disability. During that time, the landscape for the provision of travel and holiday services within the disability sector has changed significantly.

MORE THAN ‘RESPITE’ Three decades ago, often any time a person with a disability spent away from their family was simply called ‘respite’, and the range of options and activities for that individual were extremely limited. While it was originally founded primarily as an alternative to the traditional respite services available at the time, Holiday Explorers quickly evolved into an organisation which not only provided respite for carers, but also delivered an exciting and often transformative experience for the client with a disability. Today, many hotels and venues are fully accessible to people with a broad range of disabilities, and their active presence as

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travellers enhances engagement with the wider community. “In many instances, the families have been so busy looking after their son or daughter, teaching them important life skills, and they haven’t had the resources or time to focus on the skills they might need to go on a holiday without their family,” Lisa Albinus. “But when the tourists come back from one of our trips you can see a real difference. “They might be shy and reserved and not know anyone else when the trip starts, but when they come back they are often swapping phone numbers with new-found friends, sometimes singing a song they’ve made up together, and planning to catch up again and take another holiday.” Today, Holiday Explorers provides services to around 500 members each year, and offers a range of experiences from one- and two-day holiday outings in South Australia, to international holidays of up to two weeks with destinations including New Zealand, Canada and Hong Kong. Interstate holidays to Australian capital cities are regularly on the itinerary and may include activities like AFL football, theatre and concerts, visiting TV filming sets like Home and Away, and visiting many of the popular tourist attractions associated with that destination. Skills development opportunities, such as cooking classes or fishing charters, are also offered, and recently the options have been expanded into adventure experiences, such as obstacle and high ropes challenge courses, where people can enjoy more physical challenges.

POWERED BY VOLUNTEERS A group of 55 volunteers is integral to the Holiday Experience model, with the usual ratio of two highly trained volunteers accompanying a group of five travellers. This ratio has proved itself over time at Holiday Explorers. Within a small group setting, tourists have the opportunity to take supported risks with their independence, and

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HAVE DISABILITY, CAN TRAVEL

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s people with disability have moved out of institutions and into the community in recent decades, they have become active travellers and a range of organisations have evolved to cater to their needs. According to the World Health Organization, around 15% of the world’s population lives with some form of disability. Another UN body, the World Tourism Organization, estimated that 12% of the 1.2 billion people who travelled internationally in 2015 had some form of physical, medical or sensory disability. As the number of tourists with disability has increased, accessibility is another area that has improved the travel experience for them. In Australia, the Disability Discrimination Act (DDA) stipulates specific infrastructure and assistance at facilities such as airports. The DDA demands that airlines and airports provide services for people with disability to help with getting around the airport, handling baggage, and getting on and off the plane. In situations where there is no aerobridge to enable wheelchair access, airlines must be informed in advance but are required to provide a lift. In most cases, people with disability are first on and last off. There has been some controversy over the so-called ‘two wheelchair’ policy which has created a limit of two wheelchairs per flight, but this is still applied by most airlines. Some passengers have been able to take collapsible wheelchairs onto larger planes, such as the A380, depending on the policy of the airline. People requiring assistance dogs are generally able to take their animals with them in the cabin of the plane on domestic flights, where

they can lie on the floor. Brisbane Airport was the first airport in Australia to have a dedicated outdoor area for assistance dogs. In terms of accommodation, most major hotel booking sites have a filter option for accessible accommodation, with some offering sub-categories for the blind, the hearing impaired and so forth. Anecdotally, Holiday Explorers’ Executive Officer Lisa Albinus says she has noticed major improvements in her time working in the disability area. She says it is rare to find a destination that does not cater for the particular needs of a travelling group, and that tourism operators are increasingly understanding that people with disability are a whole new client group. “We notice things like changes to layouts and physical access,” she says. “These things are really improving. Once we would have to go into a long spiel about what we needed when we made a booking; now it is clear that more people understand and they have facilities which can deliver that.” Albinus says the cruise industry in particular has made “big changes”. “I’m talking about things like walk-in showers, the configuration of rooms to allow beds for carers, and a higher number of accessible cabins on cruise ships.” Information on accessible travel is available online at cangoeverywhere.com and australiaforall.com, while an academic at the University of Technology Sydney, Professor Simon Darcy, regularly updates his blog at www. accessibletourismresearch. blogspot.com.au

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ASSISTED TRAVEL

Three decades ago, often any time a person with a disability spent away from their family was simply called ‘respite’. Now, companies like Holiday Explorers deliver an exciting and often transformative experience for the client with a disability. it allows those involved to build relationships with fellow clients/tourists and the volunteers. Keeping the group size smaller also allows those involved to have increased community participation by blending more easily into public events and travel easily by air, train or bus. All of this is facilitated by volunteers who travel with the group. “The bulk of our volunteers would be over 60 and haven’t necessarily worked in the disability sector before, although some of them have an association or experience with a person with a disability which has sparked the idea to volunteer for us,” says Albinus. “Some

volunteers support one trip a month while others, who may still be working, might volunteer for two or three trips a year. It comes down to them being able to choose their level of involvement for when they are available. “Once our volunteers have been with us for a few years, they normally stay with us for 10 to 20 years. Over time they build a fantastic repertoire of skills, knowledge and experience, and see that they can make a real difference.” The volunteers, says Albinus, are a unique part of the Holiday Explorers model. “Our preference is to engage volunteers who are supporting a holiday that they have interest in and knowledge

about, because it is much easier to motivate someone to get involved if you are motivated yourself,” she says. “We still have paid staff on some holidays for specific support or holiday itinerary requirements, but the idea that someone is super motivated as a volunteer to go to a travel destination and share that with a group of tourists with a disability has worked really well for us.” Holiday Explorers also invests in supporting the volunteers so they can fulfil their role. As Albinus says, there is an expectation that they act not just as a support worker, but they are also coaches, facilitators and mentors. “We talk with the carers and person with a disability (the tourist) before the holiday so we can let our volunteers know what the tourist wants to achieve, so that the volunteers can create opportunities to enable this to happen,” she says. “That might be cooking breakfast in the apartment to working out how to catch the tram so they can

SHARING THE JOY OF HOLIDAYS FOR 30 YEARS enabling real choice, engagement & connection to the community MEETING NEW PEOPLE & MAKING FRIENDS

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ASSISTED TRAVEL

get from point A to B for activities. “The volunteers have a very valued role to play, and they are such a part of what we do that we have a running joke that they need to put in annual leave applications themselves when they go on their own holidays.”

A NEW MODEL UNDER THE NDIS The advent of the NDIS has brought about changes for Holiday Explorers and its clients. The organisation is no longer offering a respite and holiday service, but instead, a unique way for its clients/ tourists to work towards achieving personal goals, while experiencing some time away from family and carers. The NDIS has pushed those providing services within the disability sector to see the value of goal setting for personal growth, and therefore clients will have to justify including the holidays in their plans, even though the scheme does not fund holidays specifically. “We have always been goal and

personal development focused, it’s always been more than a holiday to us and the NDIS provides us with the opportunity to highlight the benefits that people receive from travelling with us,” says Albinus. “Previously as a respite and holiday service we had two clients: the person with the disability who was going on the holiday and the families who were receiving respite. “Under the NDIS there are now specific goals within a person’s plan that we will work with that person to achieve for the parts that they select Holiday Explorers for.” Holiday choices, based on client interest and feedback, are directly linked to outcomes, such as meeting new people, learning new skills, having new experiences, making friends and having fun. Holiday Explorers works with its clients and helps them show how the holidays are vehicles for developing daily living skills and engaging with the

community, as well as improving their health and fitness. “When I think about it in terms of what I have to consider when going on a holiday, it is different for me – I don’t have to justify a trip to Hawaii saying I want to get fitter or learn how to surf, even though I might surf the whole time I am there and come back in better shape,” says Albinus. “But because the NDIS doesn’t fund the holiday itself, we need to demonstrate that there is more to it than just the travel, and that people have a greater understanding of our service so they can articulate this when they go and speak about their NDIS budgets with the NDIA. “We do have a 30-year track record of helping people with intellectual disability to boost their confidence and their abilities, their capacity and achieve their personal goals and I feel positive about us finding our place within the NDIS as it develops.” n

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T E C H N O LO G Y & I N N O V AT I O N

ASSISTED TECHNOLOGY: A VISIT FROM THE FUTURE Technology and innovation is having a profound impact on those with disabilities, who are now able to connect with their homes and the outside world in ways that greatly improve their quality of life. By Lachlan Colquhoun.

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igital technology continues to advance at a rapid speed, upending conventional legacy forms of communication. Smartphones and tablets are used for shopping and financial transactions, booking concert tickets and playing competitive games anywhere in the world at any given time. And people with disability are enjoying the benefits, too. Over a billion people worldwide suffer from some sort of disability, according to a joint report from the World Health Organization and the World Bank in 2011. Most of these people have had to overcome tremendous barriers in their lives, given that traditional forms of communication and transport have been the only things available to them until fairly recently. The digital age has done much to

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change that scenario and the pace of that change is likely to accelerate at a rapid rate with the advent of artificial intelligence and other forms of machine learning, the Internet of Things, and a host of other as-yet uninvented digital technologies.

ASSISTED TECHNOLOGY COMES TO THE FORE For those with disabilities, the advent of voice communication and other types of augmentative communication, apps and other devices that can time appliances to come on and off at any time, have had a profound effect on their quality of life. Assisted technology (AT), which covers everything from intervention, support services and digital tools such as apps, is specifically designed to make things possible and create a range of

opportunities for their users. The range of AT available for those with disabilities has almost suddenly become quite comprehensive and is increasing with each passing year, thanks to intense global market competition and the rush to get products and services to market as soon as possible. For those with disabilities, it means a whole new world of assistance with writing, reading, conveying messages through speech or voice recognition, improved movement and mobility, and tools that improve planning and time management. The beauty of much of this AT is that it can also be accessed via everyday computing devices such as mobiles and laptops through text-to-speech and voice recognition, touch-screen and minimal body movement such as sticks that can be used via the mouth to access information, and applications that perform a range of work and household functions. What this effectively means is that those with disabilities can use a combination of digital and mobile technologies to live far more independently than they ever have in the past. A good example of this is SMS texting, something that everyone now takes for granted but which had a radical impact on how those with speech and hearing disabilities could communicate over mainstream networks. Earl Schonberger, the director of Only Care – an NDIS-registered service provider based in Sydney – says AT plays an integral role in improving the quality of life for his clients, many of whom have highly complex disabilities. The AT that is most effective usually involves a range of devices such as

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T E C H N O LO G Y & I N N O V AT I O N

advanced hoists and other equipment for moving and transportation, alert sensors and panic buttons for controlling their environment in the home or at work, Schonberger says. “Some of my clients use apps that allow them to see who is at the front door and other areas of their house. They also use things such as benchtops that can automatically be adjusted up or down for the height of a wheelchair.” Similarly, Christos Iliopoulos, the founder and director of Freedom Housing. also based in Sydney, says his clients use a range of AT apps to turn appliances on and off, open doors and even raise alarms if need be. “It allows them to organise their lives and to communicate with others in a variety of ways,” he says.

THE NDIS NURTURES INNOVATION In Australia, the National Disability Insurance Scheme (NDIS) was founded with the aim of providing everyone with a disability the necessary support services and mechanisms to improve their living conditions in as inclusive a way as possible, and AT is at the core of this objective. The NDIS and its support agency the NDIA also play a vital role in the funding of technology innovation in the disability sector. Part of its mission is to understand what is happening in the field and recommend priority R&D activities that promise the greatest benefits and to then support them through a number of stages to eventual rollout. The role of the NDIA, in the meantime, is to provide the best possible information about what options are out there for participants and how to maximise their choices for their advantage. This is not restricted to those with physical disability – it also relates to the use and uptake of mainstream technologies, sometimes in conjunction with specially developed apps, for the 70% of scheme participants that have intellectual disabilities. Schonberger says the NDIS is a slow burn but it is not easy to get funding for innovation and invention and there needs to be a stronger connection between

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the money and the people who need equipment and services the most. “We’re currently in the middle of its first iteration and it may require some time for people to get really comfortable with how things work,” he says. Iliopoulos agrees that the NDIS is an important first step in driving innovation in the sector but says the government needs to do more to provide incentives for manufacturers of disability-related apps and tools, and especially transport aids. “They especially need to raise the percentage of new housing that complies with NDIS requirements,” he adds. A spokesperson for the NDIS says Australia’s assistive technology market is forecast to reach $1 billion annually by full scheme in 2020. “As more participants enter the scheme, demand will increase and participants will be able to buy an expanding range of AT products with their NDIS-allocated budget, giving them greater choice and purchasing power.” It will also have a profound influence on the development of Australia’s AT sector across a range of emerging solutions, potentially making Australia an AT innovation hub of the future.

A FUTURE OF ENDLESS POSSIBILITIES The most exciting area of future AT is surely artificial intelligence (AI), where robots may perform most of the menial tasks we do today and offer support services that include everything from cooking to cleaning and transportation. Further down the track, we can expect to see the development of artificial limbs and advanced neurorelated functioning that will open up a whole new world of possibilities to those with physical disabilities. One US company, LC Technologies, has invented a device that allows people to control computers using just their eyes. The device was primarily developed to assist those with severe multiple sclerosis and motor neuron disease, of which there are millions of sufferers worldwide. The inventors of Eyegaze Edge understood that the neurons that control

eye movement are more resistant to degenerative diseases so they developed technology known as Pupil Centre/ Corneal Reflection, or PCCR. A nearinfrared LED (light-emitting diode) light illuminates the user’s eye and a camera then measures the distance between the centre of the user’s pupil and the reflection of LED light on the cornea. Only Care’s Schonberger has a client with severe multiple sclerosis who uses two little sticks in her mouth to do an amazing array of things. “One stick controls her phone and by breathing in or out (commonly known as sip/puff) she can make and receive calls while the device is fully hooked up to her computer using iGaze technology, which is like a keyboard overlay over your computer screen that selects the letters you want to type.” Similar products are already available that allow users to control a keyboard using a bracelet. “The device is so finely tuned that it senses muscle flinching based on a person’s ability to twitch or make subtle movements. This allows quadriplegics who can make subtle movements control what they’re doing on a computer screen,” Schonberger says. Another device, HeadMouse Nano, allows users to control a computer wirelessly using just head movements. Developed by Origin Instruments in the US, a camera tracks the movements of a reflective dot stuck to a user’s forehead and these motions control a computer cursor. The user makes selections by using either the sip/puff method or by dwell time – meaning how long the user’s head stays in a particular position. These tools may seem amazing now but they will become progressively more mainstream in just a few short years, as will ‘sign-to-speech’ apps that audibly translate sign language from the hearing-impaired, or DOT, the world’s first Braille smart watch which translates SMS messages and notifications into Braille. Digital technology is reshaping the world in many ways, and assisted technology for people with disability is likely to be at the forefront of that change for some time to come. n

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LIVING & HOUSING

MAKING HOMES MORE LIVEABLE BY THE DAY Digital technology has had a profound impact on just about everything over the past 20 years and nowhere is this more apparent than in the design and implementation of housing features for people with disability. By Lachlan Colquhoun.

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he homes of the 21st century offer features that would have been almost unfathomable not that long ago, and current levels of digital innovation and invention will accelerate the pace of this change. In Australia, governments have had a role to play in this development. In

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2010, the federal government and building industry groups developed the Liveable Housing Design Guidelines that included recommendations for properties to have step-free paths to the street and light switches, power points and door handles within easy reach of a wheelchair user. Around half of Australians aged over 65 years in 2015

reported as having a disability and with that population growing (the number of Australians aged over 75 years is expected to rise from 6.4% to 14% by 2060), more people with disability will be counting on accessible housing in the coming decades than ever before.

HOME AUTOMATION These developments had a modest effect in improving the living conditions of people with disability, yet just eight short years later, as the age of artificial intelligence (AI) moves from science fiction to science fact, smart home systems are already becoming mainstream and providing immediate tangible advantages for their users.


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Commonly known as the Internet of Things (IoT), products such as Google Home, Amazon Echo and Apple Homekit can program fridges, air conditioners, televisions and alarms to perform most of their functions at a time of your choice, all through either a remote control, a mobile app or by voice recognition instructions similar to Apple’s Siri. These smart home systems are enhancing the lives of those living with disability in a number of ways, offering far greater autonomy, not just for those lacking mobility, but for those with sensory disabilities. While 10 years ago, turning on a heater would have required real-time manual input, automated functions are becoming increasingly mainstream as increased competition makes serious inroads into pricing. These days, home automation through off-the-shelf IoT products also contains closed-circuit TV functions that alert an immobile user to when someone is at the front door, functions for opening all doors and blinds, and sensors that detect movement throughout a house and turn on lights and heaters automatically when someone enters a room. Sensors can also detect when an individual is attempting to pull their legs out of a bed and automatically turn on lights or alert a 24-hour care service provider. Sensor technology, like most of the so-called assisted technology (AT) developed for those with disability, is still in its relative infancy but in the very near future, data collected from sensors and household appliances could be used to map a person’s daily or weekly routines and alert carers if there is something amiss with that person’s routine.

combine the best of digital technology with state-of-the-art housing design. Earl Schonberger, the Director of Only Care – an NDIS-registered service provider in Sydney – says the best tailored home-living solutions involve a combination of AT solutions coupled with round-the-clock care. “We look holistically at people’s needs and a

In the very near future, data collected from sensors and household appliances could be used to map a person’s daily or weekly routines and alert carers if there is something amiss with that person’s routine.

TAILORED SOLUTIONS Tailoring digital solutions to suit an individual’s unique requirements is becoming increasingly ubiquitous. In Australia, there are plenty of innovative companies and community groups implementing housing strategies that

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lot of planning goes into their tailored solutions. Some of my clients use apps that allow them to see who is at the front door and other areas of their house,” says Schonberger. “They also use things such as benchtops that can

automatically be adjusted up or down for the height of a wheelchair.” Christos Iliopoulos, the Founder and Director of Freedom Housing based in Sydney, puts together care and accommodation models that also fuse technology with conventional housing with 24/7 care. “The beauty of our model is that we can provide all the care someone will require around the clock while allowing them to remain at home. Using this model, it is possible to dispense with nursing homes and hospices,” says Iliopoulos. “It means families can stay together and people with physical and psychological disabilities can go through every phase of life with the same choices that able-bodied people can have, from cradle to grave.” Sometimes assisted technology around the home can simply involve modifications to standard appliances such as fridges and benchtops. One of Schonberger’s clients is a quadriplegic who recently installed Google Home in his house. “It can already do a lot of amazing stuff such as set a range of alarms, provide a vast array of information on just about anything and even translate Spanish for his South American carers,” he says. Iliopoulos says his clients use a range

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Household appliances are basically still all designed with the assumption that the person operating them is fully able. The most obvious examples are fridge doors that only ever open right and ovens that open down, which is totally useless for a person with a serious physical disability. of AT apps to turn appliances on and off, open doors and even raise alarms if need be. “It allows them to organise things in their own areas of the house to maintain privacy, which is important,” he says. More importantly, the technology allows them to communicate with others in a variety of ways and, with the right levels of support, to stay in their modified homes with the appropriate support network in place. “Some designers of disability housing are only concerned with pressing

buttons. They arrogantly presume that people with disabilities are misanthropes who want to live on their own. They want to live with others, but not others with disabilities – that’s not what they ultimately want. Like the rest of us, they want to live with family or friends and too many designers just design what they think people with disabilities want.” One major obstacle to home automated assisted living, Iliopoulos believes, is that household appliances are yet to evolve in a way that assists

people with disability. “Household appliances are basically still all designed with the assumption that the person operating them is fully able. The most obvious examples are fridge doors that only ever open right and ovens that open down, which is totally useless for a person with a serious physical disability.” These are things, he adds, that need to be addressed, given the rapid advances made in other areas of digital home automation, though he has little doubt that technology will eventually catch up with old-fashioned appliances. “The first wheelchair was literally an ordinary chair with four wheels stuck onto the legs. Now it’s possible to stick a motor onto the front of one and turn it into a scooter.”

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LIVING & HOUSING

time given the rate of change occurring in the sector. So what is next in the way of assisted living and what is still a few years away? As solutions become increasingly customised to users’ needs, things such as automatic showers and cleaners are already available in their earliest iterations, along with more mundane apps such as digital keys that operate via a Bluetooth signal on a mobile app that can let someone in and out of a property without having to move (ideal for letting carers in and out of your house). Perhaps the biggest changes to assisted technology living will come through artificial intelligencerelated robotics, which will become increasingly ubiquitous within as little as 10 years. Robots performing mundane tasks around the house already exist. These include robot vacuum cleaners, robots that wash floors, iron clothes and even cook.

Rotomatic is an automated kitchen appliance that retails in Australia for about $1,300 and makes rotis and tortillas out of flour in just a few minutes, while Laundroid, developed in Silicon Valley over the last few years, folds and organises laundry using a combination of image analysis and robotics. In the future, these robots will perform increasingly complex tasks such as lifting people with hoists in and out of chairs and beds, responding to voice requests to locate and replace light globes and other things around the house and even provide worthwhile companionship to those who are more isolated and solitary. Robots will also increasingly be used for home security and are already mind-boggling in their complexity. Knightscope, which was developed in Silicon Valley over the past few years, uses a night-vision wide-angle camera that detects movements and intruders.

It patrols set areas, shooting video and sending immediate alerts of suspicious activity via email or text message.

CONCLUSION Living with disability will always pose a range of unique challenges for people and their carers. Yet the smart home systems of today and tomorrow are helping to enhance their experience in a number of vital ways. As they become increasingly automated and are tailored to an individual’s needs, they will enrich the lives of their users by freeing up valuable time that would previously have been spent performing mundane chores or moving from one place to another, at the same time offering a far wider array of entertainment options. Most importantly, they will facilitate a higher level of independence around the home while simultaneously improving communication between family, friends and carers. n

Customised Specialist Disability Accommodation (SDA) Customised SDA to meet the specific needs of individuals with a disability. Everyone's needs are different and SDA should be specifically designed to meet individual needs. This is what Illowra Projects specialises in. A complete solution for creating a new home through : Advice on pathway to SDA funding Design to increase independence Development Management to simplify the process SDA Property Management for stress free living

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UNIVERSAL DESIGN TICKS ALL THE BOXES Well-designed housing addresses a pressing community need, and when it is done right it can create a tenant for life. By Harry Thring.

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wen Jourdian became acutely aware of the need for better housing design for people with disability after the son of a colleague was punched on his 20th birthday in Melbourne’s CBD. James Macready-Bryan fell and hit his head on the concrete, resulting in brain injury so severe he was unable to speak to those around him, move or feed himself. It was a devastating attack and one which was widely publicised around Australia. Jourdian, who had a background in property development and as an advisor to various family businesses and co-operative organisations, felt compelled to help. He returned to study, focusing on access design, and combined his acquired knowledge with property development. He founded Illowra Projects, a Victorian company designing customised accommodation for people with disability. “I realised there was a need for better design and accessibility of dwellings and a lot of the homes we live in are not well thought through from a universal design perspective,” Jourdian says. “James ended up needing somewhere to live and there wasn’t anything available for him. His scenario and plight was quite well published in Melbourne – he fortunately now has somewhere to live, but I worked with his father who made me aware of how hard it was to find somewhere suitable for his son.” Examples highlighting the problem of housing for people with disability are

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not always as traumatic as the sudden change in James Macready-Bryan’s life. Jourdian has an even closer connection to the importance of well-designed housing, with his father recently falling ill and requiring the use of a wheelchair. “My mum wasn’t able to get him around the house because they lived in a poorly designed dwelling,” he says. “Other people often tell me how hard it is to navigate but the real issue is that it isn’t top of mind until something goes wrong. It’s not until you actually have someone who has an issue that you think about it.

It actually doesn’t cost that much extra to make a welldesigned house. But you’ve got to be thinking of it and you’ve got to think about it in the design and often that isn’t done. “We’ve got some voluntary guidelines in Australia to design buildings to, to improve accessibility, but they are just that – they’re voluntary and they’re not called up as mandatory requirements in the National Construction Code. “You know what? It actually doesn’t cost that much extra to make a welldesigned house. But you’ve got to be thinking of it and you’ve got to think about it in the design and often that isn’t done.” Universal design is fundamental to Illowra Projects’ approach – the idea that homes can be designed and built to house people with and without disability, without the need for complicated and expensive alterations.

It is a simple, commonsense approach. A wider door frame makes it easier for a wheelchair or for a pram to pass through, while having more circulation space in bathrooms and toilets also makes it more accessible – there are many ways homes can be designed for improved accessibility. “There’s universal design, which should be in all homes – it’s not hard to do, it’s not expensive, it should just be done, but we take this much further by customising the dwelling for residents with a disability,” Jourdian says. “The customisation we do comes from a base of universal design but then there’s a lot of things that we would do which would be specific to the individual.” A level of ‘base’ technology serves as a starting point for Illowra Projects’ designs: doors and windows, lights and climate control, where required, are all linked to an individually designed user interface. With the help of the company’s specialised team including an occupational therapist, the user interface is built to accommodate the exact requirements of a client’s particular disability. Director of PWS Better Living Foundation James O’Brien knows first-hand how difficult Prader-Willi syndrome can be – his 24-yearold son battles it every day. While O’Brien’s son currently lives in a group home with four other adults, the joint project between the PWS Better Living Foundation and Illowra Projects will consist of two dwellings, each built for two occupants. The unique requirements of the syndrome mean the two houses will include separate and lockable food preparation and storage areas. The homes will also include regular kitchens in which the occupants can participate in the preparation of their own meals, but a separate area will ensure they cannot access extra food. “I personally believe that a person should at least have the opportunity to have accommodation for life,” O’Brien says. “If you’re at risk of disease and illness as a consequence of obesity, you really need a home without tripping hazards, you need wheelchair access and all of those things because otherwise you’ll be there for a short time and then you’ll be out to a nursing home. “If the design’s right, you’ve at least got the potential for a tenancy for life.” n

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Jenna, Youngcare Wooloowin Housemate since 2016

Are you or a loved one looking for a place to call ‘home’? For 13 years Youngcare has led the way in designing premium, age-appropriate housing for young people with high physical care needs; providing them with the choice to live young and independent lives in their own home. We are working with industry and government to build more dynamic, modern living spaces that enable young people to live independently with appropriate and dignified care. To date, Youngcare has built four residences, home to 36 young people with high care needs, with four more commencing soon.

We are committed to ensuring all young people regardless of their care needs have the freedom to choose where they live, who they live with and how they live their lives.

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National Disability OUTLOOK 2018  

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National Disability OUTLOOK 2018

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