Bruce Bonyhady:‘Every Child with a Disability Every Chance’

Posted on 17 May 2016

ACEL
‘Every Child with a Disability Every Chance’

Introduction

I would like to acknowledge the traditional owners of the land on which we are meeting and to pay my respects to their Elders – past and present.

I also want to thank ACEL for inviting me to speak this morning.

I deliver dozens of speeches about the National Disability Insurance Scheme every year.

But today’s speech is of special importance, because the NDIS cannot achieve its full potential without the strong support of the education sector – locally, regionally, across States and territories and nationally.

That’s why I am here.

To secure your support and to build a mutually beneficial partnership.

The need for a partnership between the NDIS and the nation’s schools is demonstrable.

Until now, if you have been born with or acquired a disability in Australia you have been shut out of mainstream life and to all intents and purposes treated like a second-class citizen.

If you don’t believe me, consider the facts:

According to the OECD, 45 per cent of Australians with a disability were living at or below the poverty line in 2010 – the worst outcome of any OECD country;

Australia’s record in terms of employment of people with disability is also very poor, ranking in the bottom one-third of OECD countries;

And, in 2012, 60 per cent of children without disability completed high school compared with just 36 per cent with a disability and, over the preceding decade the gap widened, as completion rates for children without disability improved more than for those with a disability.

The NDIS is designed to break down these differences and barriers to make mainstream life more accessible to Australians with disability.

The greatest challenge facing people with disability has been the disability support system itself.

In 2011, the Productivity Commission found the current disability system was

“underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports”.

The Productivity Commission concluded that the best way to fix this broken system was to build a new one the NDIS.

But it is essential to recognise that the NDIS cannot and should not do everything for Australians with a disability.

The NDIS does not and should not fund education for children with disability. That responsibility remains with primary, secondary and tertiary education providers.

Similarly, the NDIS does not fund health services for people with disability. This is the responsibility of health.

In fact, every Commonwealth, State, Territory, and Local government agency and department still has obligations to ensure their programs, services and premises are accessible and inclusive to all Australians.

Those universal service obligations are spelled out in the National Disability Strategy.

And once the NDIS is rolled out every service provider needs to become even more accessible to people with disability

because you are likely to see more, not fewer, people with disability in mainstream settings, including schools.

We therefore want to work side-by-side with the nation’s teachers and schools.

We need you to help prepare students with a disability to take their rightful place in mainstream life.

We need you to help us overcome prejudice in the broader community, because so many societal attitudes are formed and shaped at schools.

You and your colleagues have a crucial role to play, as educators and custodians of Australia’s future, and we want you to be our partner on the NDIS journey; to be part of its evolution.

With that in mind, today, I want to do three things.

Brief you on the NDIS and its progress.

Explain the insurance principles which underpin the NDIS and the NDIS Outcomes Framework.

Explain how schools and the education sector can partner with the NDIS, to transform the lives of children with a disability.

NDIS Overview

The NDIS is the most significant social and economic reform since the introduction of the original Medicare scheme in the 1970s.

The Vision of the NDIS is to maximise the independence and social and economic participation of people with disability.

The Scheme commenced a three-year trial phase on 1 July 2013.

Currently, the Scheme is operating in all States and territories and has close to 25,000 participants with an approved plan.

The trial period which ends on 30 June this year has been a success.

The NDIS is on time, on budget and participant satisfaction is in excess of 90 per cent.

Given the enormous complexity of the NDIS, these are remarkable achievements.

From 1 July this year, the full roll-out of the NDIS will commence across all States and territories and more than 400,000 participants will enter the NDIS during this phase, which is due to be completed in 2019.

In most jurisdictions the rollout schedule is geographic and the details of when the NDIS will become operational in your area are available on our website.

I would encourage you to familiarise yourself with this information.

And please talk to colleagues who have experienced the NDIS, first-hand, in our trial sites to learn more. I am therefore delighted that you had two Principals from the Barwon and Hunter trial sites speaking to you yesterday.

When it is fully operational, the Scheme will serve around 460,000 participants.

NDIS participants include people with intellectual, physical, sensory and psychosocial disabilities. The most common disability is intellectual, with about 70 per cent of NDIS participants having an intellectual disability.

The Scheme includes early intervention services for children with significant developmental delay and manifest disabilities, as well as adults with progressive disabling conditions.

Participants receive services and supports that meet their ‘reasonable and necessary’ needs primarily using a functional assessment, rather than a medical diagnostic, approach.

The functional approach also means that the NDIS aims not to label participants something I will have more to say about later.

Each participant has a plan and goals that focus on maximising independence and social and economic participation, in line with the key goals of the NDIS.

All participants and their families have access to a Local Area Coordinator or LAC to assist them with planning and community access, including schools.

The planning discussion is strengths focused and starts with the capacity of the individual, their potential and family and community supports. Only then is there a discussion about NDIS funding in order to achieve an ordinary life.

The participant and their family then have “control and choice” over how the funding is spent, so as to maximise the utility for them, but none of these funding allocations are to cover the costs of educating a child.

If your school has a student with a disability who is a participant in the NDIS our job is to ensure that boy or girl has the supports they need to access your school.

  • That might mean a wheelchair.
  • Or a hearing aid.
  • Or help in the morning to get ready for school.
  • Or an aide to assist with personal care at school.
  • Or early intervention before prep or foundation year to give them a running start in life.

The law does not allow us to fund the education of those children or to make the curriculum or the school accessible. Those responsibilities remain with the school.

In other words, the NDIS is not a new source of funding for the education system.

Insurance Principles

The NDIS is a disability insurance scheme.

It is designed to provide funding for the disability supports that the 460,000 Australians who are expected to be participants will need.

The NDIS is also for everyone and for future generations.

By paying premiums to the NDIS, through the Medicare levy and general taxes, Australians share the risk and help each other.

Once the NDIS is fully rolled out, it will cover the reasonable and necessary needs of every Australian who is born with or acquires a disability before the age of 65 and whose disability is permanent, and significantly affects their functional capacity, and requires ongoing support.

In many ways, the insurance principles upon which the NDIS are based are ground-breaking. 

Traditionally, the costs of disability services have been approached using a short- to medium-term outlook.

Governments plan for expenditures over a 12-month period to at most a five-year time frame.

As a consequence, the funds available for disability have changed depending on the economy, tax revenues and the requirements of other portfolios.

That means disability services have had to perennially justify their existence and there are always short- to medium-term pressures to cap or cut costs.

Insurance models are very different.

Under an insurance model, expenditure is factored in over the life of an individual and scheme sustainability is measured by calculating the total future costs of all those who are insured.

This approach creates an incentive to make short-term investments that maximise lifetime opportunities and reduce long-term costs.

For example, the best way to reduce long-term costs is to increase an individual’s independence and lift his or her participation in the community and the workforce.

Outcomes are continually compared with forecasts and divergences are investigated carefully to control long-term costs, ensure Scheme sustainability and drive improvements.

We are a data and evidence-based organisation, which is deeply committed to listening, learning and improving, as well as building the NDIS.

Our philosophy is to learn and build; build and learn.

A recent example of the Agency learning and adapting are the changes to our approach to early intervention particularly for children with autism and developmental delay.

In this case, our results were on track in three trial sites but not in two others.

Consequently, we applied these lessons to develop a national approach Early Childhood Early Intervention that is family centred.

We will keep measuring its medium- and long-term benefits for children and their families.

And we will keep coming up with more refined and improved approaches, as part of an Outcomes Framework, that enable people with disability to .

  • have more choice and control,
  • live independently,
  • have relationships,
  • be healthy and engaged,
  • have a home of their own,
  • keep learning throughout their life,
  • find a job, and
  • participate in the life of their community.

For school-aged children the Outcomes Framework includes the following key domains:

  • children grow in independence,
  • children are welcomed and educated in their local schools,
  • children form friendships with peers and have positive relationships with their family, and
  • children participate in local social and recreational activities.

The domains for families with school-aged children are:

  • families understand their children’s strengths, abilities and special needs,
  • families know their rights and advocate effectively for their children with disability,
  • families help their children develop and learn,
  • families feel supported,
  • families are able to gain access to desired services, programs, and activities in their community, and
  • families enjoy health and well-being.

Make no mistake, the NDIS is a social and economic revolution.

According to the Productivity Commission, the NDIS will boost Gross Domestic Product by 1 per cent by 2050.

It will create jobs around 60,000 to 70,000 people on a full-time equivalent basis.

And it will give hundreds of thousands of Australians with disability the opportunity to join in the mainstream life of this nation.

It will make us more diverse and more productive.

But what, I hear you ask, does all that mean for the education system?

Let me explain.

Building the Partnership between the NDIS and the Education Sector

Generations of Australians with a disability have been held back by the burden of low expectations.

They have not been expected to excel in school or in life.

And in many cases they have therefore never been given the opportunity to reach their full potential.

The NDIS is designed to turn that burden of low expectations on its head.

Instead of treating Australians with a disability as a social and economic burden to be carried, we consider each and every participant in the Scheme as an individual to be empowered.

And we have high expectations of those individuals.

For these expectations to be met, children with a disability must receive a good education and there must be strong and positive partnerships between the NDIS and the education system at every level.

But what does partnering in a good education for children with a disability mean

Partnering in a good education for students with a disability means schools must be truly inclusive.

All children have special needs. Children with disability are no different to their able-bodied peers; they just have different special needs.

The truth is students with disability are still not included in many schools.

They are frequently tolerated, rather than welcomed.

Too often they are not accepted as equal members of the community and this kind of insidious discrimination has to end.

Partnering in a good education means giving students with disability and their families the power to exercise control and choice and building supports around them, rather than the other way around.

Parents know their child best and the feedback they are giving us is they want learning and development at school and at home to be coordinated and holistic.

Each child should have a single plan and agreed goals which is developed and reviewed jointly, rather than a disability plan and an education plan and a health plan.

Putting the child at the centre is best established through formal coordinated structures which bring together the child, families, schools and the NDIA. The funding arrangements should then be sorted out in the background, based on agreed responsibilities.

We have had some success with this approach in both Victoria and Tasmania and would like to see it introduced and strengthened in all States and territories.

Partnering in a good education means using the NDIS Local Area Coordination support for children and their families as they transition from pre-school to school, primary to secondary school and from secondary school to post-school.

Our LACs will be able to assist with planning and coordination, as well as advocate, in these vital periods.

Up to the age of 6, children with disabilities will also be supported through our Early Intervention Early Childhood Gateway.

Partnering in a good education means children who are NDIS participants will have access to a range of specialist supports.

These supports are available to advise schools on individual needs to make it easier for students to learn.

These supports should be coordinated and organised so they do not distract from teaching of the curriculum.

Partnering in a good education means planning for a student’s life post-school much earlier in their secondary schooling with a focus on work and inclusion.

Young people with disability should have the same access to school-based traineeships and work experience as their able-bodied peers.

Schools should also link up with NDIS strategies, such as the School Leavers Employment Support Package.

Employment-focused partnerships between students with a disability, their families, schools and local businesses will also help to build more inclusive communities.

Partnering in a good education means we need a much more open discussion about what constitutes ‘reasonable adjustment’ so that the expectations of the NDIS and the education sector are much better aligned.

We need families to feel that they have genuine choice between integration into mainstream schools and special schools, based on best meeting their child’s unique needs.

Finally, partnering in a good education for children with disability means we need to learn and build together.

We have learned much from the trial phase and in the years ahead we are committed to working with the education, health and other sectors which people with disability need to access.

We are also required to report on how successfully the NDIS is working with these complementary systems, to identify any support gaps or attempts to shift costs and measure progress.

Recently, Graeme Innes, the former Disability Discrimination Commissioner, completed a report for the Victorian Government: The Education State: Review of the Program for Students with Disabilities.

A number of his key recommendations are particularly significant and closely aligned with the NDIS.

First, we need a policy framework that defines inclusive education, so that all schools have a consistent understanding of their roles and responsibilities to make education inclusive for students with disabilities.

Second, we need a set of outcome measures and indicators for students with disabilities, against which schools are required to report and which I would suggest need to be developed in consultation with the NDIA so that we are in alignment.

Third, we should also have a functional needs assessment tool and a process for completing personalised planning so that all students with disabilities are supported consistently, regardless of the school they attend. Again, there is an opportunity for us to work collaboratively, given the work that the NDIA has already undertaken on functional assessments.

One of the most important issues, as we go forward, will be the development of consistent definitions of disability.

Amongst the 460,000 anticipated NDIS participants we expect about 130,000 will be school-aged and represent about 3% of all school children.

In Victoria about 4 per cent of students benefit from the Program for Students with Disabilities.

According to the Survey of Disability, Ageing and Carers, which defines disability as any restriction or limitation, about 9 per cent of school aged children have a disability.

In contrast to these quite modest percentages, the emerging picture from the Nationally Consistent Collection of Data on School Children with a Disability is that up to 20 per cent of children will be classified as have a disability.

This is not surprising given that the new school data classifies children with social and emotional problems as having a disability and it includes all children with a difficulty with learning.

My question and challenge to you is: Is such a broad definition of disability in the best interests of so many children?

I believe labels need to be applied very carefully and can be dangerous if they lead to unintended consequences. So as we go forward, as we seek to better meet the education needs of all children, I believe we need to challenge the suggestion that up to 20 per cent of all children in our schools should be described as having a disability which affects their learning and which the media is labelling “disabled”.

Conclusion

In February, I launched a book.

That book – The Shouted Goodbye – tells the story of how the Ward family fought to ensure that their daughter, Mena, became a full citizen with friends, a job and the opportunity for a mainstream education.

It is an extraordinary story. An inspiring story.

But it is also a story of prejudice and ignorance.

You see, Mena had a mitochondrial disorder.

She was a severely disabled kid.

And it was Queensland in the 1980s.

And it seemed like no one not teachers, not principals, not unions, not other parents wanted Mena to be able to attend her local primary or secondary school.

Mena’s parents, Margaret and Jeremy, were therefore forced to become pioneers in the push for mainstream education.

They were inspired by what Margaret had seen in Canada, when she visited on a Churchill Scholarship and against insurmountable odds they fought the system and won.

Looking back, the prejudice and ignorance that Mena faced was easy to identify and therefore campaign against.

Now, prejudice and ignorance often comes in camouflage.

We say we want an inclusive society.

But do we really?

If we do, why is it that many students with disabilities are still unwelcome in mainstream schools?

Why is it that so few people with disabilities live in the community or are employed in the workforce or live the life that those of us who do not have disabilities take for granted?

Why is it that some people against all the evidence to the contrary claim that Australia cannot afford the NDIS?

Let me leave you with this thought.

Mena Ward beat the odds.

She went to mainstream schools. She lived independently. And she lived a full but all too brief life.

Sadly, so many of the challenges Mena faced back in the 1980s remain challenges today.

But what the story of Mena demonstrates is that people with disability can be valued citizens in their communities.

  • It is possible.
  • It can be done.
  • It must be done.

If we, you and I, act individually and lead collectively we will ensure our community and our education system become truly inclusive and accessible.

And then Mena’s story will no longer be the exception. It will be the norm.

And every child with a disability will have every chance.

Thank you.