Strengthening Disability Advocacy Conference 2017
Getting into gear for the NDIS journey

Friday 15 September @ NAB The Hall

Keynote address: What should the NDIS look like within a Human Rights Framework?

When

Friday 15th September, 2017: 10:10am - 10:30am

Where

The Hall

Speaker

Alastair McEwin, Disability Commissioner, Australian Human Rights Commission

Alastair’s background is in arts, law and business administration. Alastair’s previous roles include CEO of People with Disability Australia and Manager of the Australian Centre for Disability Law. He is currently President of the Deaf Society of NSW and Chairperson of the NSW Disability Council, the official advisory board to the NSW Government on disability issues.

Photo of Alastair McEwin, Disability Commissioner, Australian Human Rights Commission

Session Summary

The Disability Commissioner was not able to attend in person however he provided a video that was shown on the day.

His presentation reflected on some of the human rights issues that have arisen since the NDIS began and what is required to ensure we see the NDIS reaches its true potential within a human rights framework.

 

 

Transcript

MELISSA HALE:
Our next session is our keynote address by the Disability Discrimination Commissioner, Alastair McEwin.  In this presentation, Alastair will reflect on some of the human rights issues that have arisen since the NDIS began and what is required to ensure we see an NDIS reach its true potential within a human rights framework.  Unfortunately Alastair sends his apologies for not being able to attend in person today.  However, he has provided me with a video message for you all.  Enjoy.

MR ALASTAIR McEWIN:
I’m Alastair McEwin, the Australian Disability Discrimination Commissioner based at the Australian Human Rights Commission.  Firstly I acknowledge the traditional custodians of the land on which you meet today, the Wurundjeri people of the Kulin Nation, and I pay my respects to their elders past and present.  I also pay my respects to Aboriginal people present at the conference today.

Thank you so much for the opportunity to speak with you today and I’m so sorry that I am unable to be there with you in person.  I send my best wishes to you all and my congratulations on your continued advocacy for the rights of people with disability all over Australia.  Keep up the good fight.  I also acknowledge other presenters, in particular Minister Martin Foley.

Let me share with you some of my reflections on some of the human rights issues that have arisen since the National Disability Insurance Scheme began and how we may work to see the NDIS reach its true potential within a human rights framework.  How far have we come?  I want to reflect on all that has happened and to recognise that recent decades have seen some wonderful achievements in the Australian landscape in fighting for the rights of people with disability.  However, these achievements have been well and truly overdue and now the greatest challenge in my view is to ensure people without disability truly embrace a human rights approach for all people with disability, which includes how NDIS services should be provided.

Just a few years ago the NDIS was still an idea, an idea that had first been raised in the 1970s.  And while it had been abandoned, it continued to hover behind the scenes waiting for decades to come to life.  It is important to remember that it is not yet even five years since the legislation to introduce the NDIS was passed by the Australian Parliament in March 2013.  Since then, rollout has occurred and we are moving towards full scheme.  In that time, there have been immense changes.

The legislation introducing the NDIS, the NDIS Act, aims, in conjunction with other laws, to give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities, the CRPD.  The legislation provides for the introduction of the NDIS and aims to support the independence and social and economic participation of people with disability to provide reasonable and necessary supports and to enable people with disability to exercise choice and control in the pursuit of their goals and the planning and the delivery of their supports.

The real challenge will be how to ensure that these objectives and guiding principles translate into practice within the NDIS and how they may resonate through people’s experience of the NDIS as a whole, how can these be translated into practice in people’s interaction with the agency in the planning phase, in being supported in their individual choices, in the process of approvals, reviews, and basic conversations with the Agency.  It is important that these aims and principles do not become isolated from the operation of the scheme itself and that the NDIS secures genuine empowerment and effective support of people with disabilities to shape what they want their life to look like.

While this is a real challenge, it is also a real opportunity.  From October last year to March this year I held national consultations around the country, speaking with more than 1,000 people in every capital city and some regional areas regarding what they felt were priorities that should guide my work as your Disability Discrimination Commissioner.  Six areas were highlighted around the country:  access to education, employment, housing, issues with the criminal justice system, people experiencing violence, and another key theme was the implementation of the NDIS.

In these consultations I heard stories of people whose dreams and aspirations have been supported by the NDIS so far.  This has included people like Callum.  Callum is a young man with disability.  He told me that he loved video games and his favourite place in the world was his local video game store.  Callum met with an NDIS planner to talk about his goals and support needs and expressed that he wanted to be more independent, how much he loved video games, and his dream to work in the local video game store.

Callum’s plan under the NDIS included support to help him develop his decision making and planning skills, to learn to budget and to learn to navigate public transport.  It also includes support to help him build his skills and confidence in the workplace.

Callum now works full time in the video game store.  His next goal is to open up his own online video game store and the supports in the NDIS plan are enabling him to build his skills and confidence to do this.

For people like Callum, the NDIS has assisted him to have access to the right to employment, which is Article 27 of the Convention, the right to work and employment on an equal basis with others, including the right to the opportunity to gain a living by work that he freely chose of his own desire.

I understand and absolutely acknowledge that not all people’s experience of dealing with the National Disability Insurance Scheme has been positive.  In my consultations, as you can appreciate, the most robust discussions were on the NDIS.  Talk about hot potatoes.  The things I was told included:  the NDIA could improve their engagement and communication with stakeholders, particularly people with disability; there is a need for a stronger commitment across government to address the barriers that the NDIS alone cannot address; the planning process is inconsistent, varied, often rushed, isn’t tailored to individual needs and can be difficult to navigate without advocacy or independent support; also, in practice, there aren’t clear lines drawn between what the NDIS, housing, health and education provide and this is creating service gaps; people over 65 who are unable to access the NDIS may be disadvantaged; and funding for the Information, Linkages and Capacity Building stream of the NDIS will not be enough to achieve its very important goals.

Figures were recently released regarding the increase in complaints about the NDIS.  Complaints to the Commonwealth Ombudsman about the NDIS rose from 62 to 429 in the last financial year, which is equivalent to a 700% rise.  The Commonwealth Ombudsman has suggested urgent action for about 44 of these issues.

This increase in complaints is not surprising as there has also been a large increase in the number of people joining the scheme.  While approximately 30,000 people joined the NDIS during its trial phase, another 60,000 entered the scheme over the last financial year.  There will be challenges as we navigate this new landscape of what disability support looks like after we have the National Disability Insurance Scheme.  This is an inevitable part of a new system, with new laws and still untested limits.  What you can do as the NDIS continues in its fledgling stage is to continue to press for review of decisions, to make complaints to the Commonwealth Ombudsman, and to the National Disability Insurance Agency.

The Agency itself has said that it encourages anyone unhappy with their NDIS experience to get in contact so that they can continue to improve during this important period of transition.  The Commonwealth Ombudsman has been bolstered with an additional $6.4 million in May’s budget to deal with rising NDIS complaints and additional funding will reach nearly $2 million in both the 2019 and 2020 financial years.  So my encouragement to you is push towards best practice so that limits are tested and bring greater clarity for many others.  If you perceive unfairness in a decision of the NDIA, seek internal review.  Following this, seek an appeal.  If you see a systemic issue, join with others to raise the issue with the Commonwealth Ombudsman, the NDIA, the Ministers and myself.  Be highlighters of the change required.

Since the NDIS began, there have already been 20 cases brought to the Administrative Appeals Tribunal, AAT, by individuals seeking review of decisions made by the National Disability Insurance Agency.  Some of these cases have led to clarity around the meaning of the legislation which will have a huge impact for decades to come.

For example, this year saw a significant win for not only 21 year old Liam McGarrigle, but also the thousands of Australians who will be influenced by the outcome of his legal case.  Liam lives in a small town more than 20km outside Geelong.  No public transport is available and he requires taxis because he cannot drive.  Liam also has autism spectrum disorder and an intellectual disability.

Liam had asked for funding from the NDIS for the cost of transport used for doing the activities in his NDIS plan.  He spent nearly $16,000 per year on taxis transporting him to and from his work and NDIS supported activities.  Liam and his family paid for all other transport costs, such as attending medical appointments and going about his daily life.

Previously the NDIS had said it would only contribute 75% towards Liam’s taxi expenses.  Essentially, this is like asking for a large cup of coffee and getting the cup filled only three quarters.  Far be it for me to deny Victorians their human right to coffee.

Back to Liam.  Liam sought internal review of the decision, then appealed to the Administrative Appeals Tribunal and then in turn to the Federal Court of Australia.

Liam’s mother, Michelle McGarrigle said, “We don’t have high expectations   the scheme is not meant to give us a limousine service   we just want the basics for Liam to be able to be an independent young man in his own right”, she said, “Not have to rely on his mum and dad to have to drive him to work for the rest of his life because what 21 year old wants that?”

Michelle said that Liam got a sense of purpose from his work.  “He waits outside every morning for that taxi to go to work, just like his dad does, and we’ve seen him grow into a beautiful young man because of the independence”, said Michelle.

The decision by the Federal Court of Australia in Liam’s favour meant that Liam’s transport costs would be required to be fully funded by the NDIA.  The impact of this case is that as long as other funding criteria are met, people with a disability living in rural areas who are unable to access public transport or drive would be funded for the full cost of their transport needs.

Another key human rights challenge that we face is regarding the willingness of the NDIA to fund appropriate, inclusive housing for individuals in the community in which they choose to live.  Rather than an institution, group home or aged care facility, if an individual wishes to be supported to live independently in their current area, it is my hope that the NDIS will assist to make this happen and that greater choice and genuine inclusion be available.

Article 19 of the Convention emphasises the importance of living independently and being included in the community, including the opportunity for people to choose their place of residence and where and with whom they live.

In 2013, the Committee on the Rights of Persons with Disabilities in their concluding observations on Australia’s report on how we are going with implementation of the Disability Convention recommended that Australia take action to ensure that people with disability have free choice of where they live and who they live with.  In July 2016, the NDIS introduced a funding provision with the potential to allow 28,000 Australians with disability to move into accessible and affordable housing, called Specialist Disability Accommodation, SDA.  This will be available for people with high disability support needs and is estimated to cover about 6% of participants in the National Disability Insurance Scheme.

Two weeks ago, the Summer Foundation and PricewaterhouseCoopers released a report called “NDIS Specialist Disability Accommodation:  Pathway to a mature market”.  The report identified that “the current status of the disability accommodation market is fragmented and underfunded.  As a result, it is an inflexible market where consumers have limited choice in their housing options.”  The report aims to assist the market’s growth by articulating a comprehensive vision and framework for developing the Specialist Disability Accommodation market.

So in conclusion I would like to emphasise the National Disability Insurance Scheme is not the answer to every accessibility issue that people with disability experience in Australia.  But it is part of the solution, as is the commitment of State Governments to adequately fund the rights of people with disability, as is the National Disability Strategy, the work of the Australian Human Rights Commission, the United Nations CRPD and the Disability Discrimination Act, as are the efforts, encouragement and determination of people with disability themselves, the advocacy and support of disability advocacy organisations, families, friends, teachers and ordinary Australians.  All of these parts fit together.

We must always frame the NDIS within the context of the human rights to which we are seeking access for all Australians, including Aboriginal and Torres Strait Islander people in remote areas.  When advocating for supports in education, we must know and remember Article 24 of the CRPD.  When advocating for access to employment, we must remember Article 27.

While people may say that human rights are a distant, far off thing with no practical implication for their lives, in reality human rights are the yardstick against which governments are to be held to account.  It is important to remember that experience of the NDIS and of disability discrimination does not occur in a vacuum without scrutiny, monitoring or awareness.  As we have seen in recent years, there have been many inquiries that have shone a spotlight on acts of violence against people with disability.  I sense that we are emerging into a time of greater transparency and accountability and with this transparency comes a greater strength in calling for action.

Today presents an opportunity to pause to take in the landscape, the unique challenges still to come, and to assess how far we have yet to go.  Today gives us a big picture perspective.  As you hear from other speakers today, common themes and ideas may emerge that may also illustrate further what may be some of the new challenges ahead.  It is my hope that you will be energised and ready for the next stage of the journey ahead of us.  I will be part of that journey with you.  My very best wishes to all of you for a successful conference.

MELISSA HALE:
That’s a great way to set the day ahead.  We’ll have morning tea now.  During morning and afternoon tea we’ll have videos from the NDIA and Every Australian Counts and also some really good personal stories.  So enjoy and we will see you back at 11 o’clock.