Speech by Senator the Hon Jan McLucas

Occupational Therapy Association Conference – Melbourne

Location: Grand Hyatt, Melbourne

**Check against delivery**

[Acknowledgments omitted]

It is a great pleasure to be here today to talk about a National Disability Insurance Scheme.

It is a scheme that has the potential to do for disability, what Medicare did for health in this country, what superannuation did for retirement, and what HECS did for education.

Better Start for Children with Disability

But before I get to the NDIS, I would like to touch briefly on our government’s early intervention initiatives – Better Start for Children with Disability and Helping Children with Autism.

I know that some of you here today are already involved in these programs and are providing valuable therapy to children with disability.

Today I want to thank you for your participation in these programs.

I travel a lot as part of my job and I have met hundreds of families in all parts of our country.

And I can very, very confidently say, these programs are really making a difference to the lives of children with disability and their families.

During a trip to Tasmania for example, I recall meeting a young boy with autism who after just two months of attending one of our autism centres, started speaking.

His father was there that day too and was just overjoyed at his son’s development and the fact he could hear him speak. To him it was miracle and something that gave them hope.

I have so many of these stories – so many families that have truly benefited from the support our government has been able to deliver.

Just to briefly outline the programs – Better Start for Children with Disability and Helping Children with Autism give parents of children with disability financial assistance, up to $12,000, to access early intervention services and therapies.

Children with autism or the listed disabilities are also eligible for Medicare items up to the age of 15, providing there is a treatment and management plan in place before the age of 13.

Helping Children with Autism commenced in 2008. It was first national initiative to help families and children with an Autism Spectrum Disorder. Since then, almost 22,000 children have been assisted.

Previously, the Australian Government had no involvement in the provision of early intervention services for children with ASD. It is important to remember however that the state and territory governments remain the primary providers of early intervention services for children with disability and our autism package is intended to complement their services.

Building on the success of this package, our government introduced Better Start in July last year. So far, more than 5,000 children who have been diagnosed with cerebral palsy, Down syndrome, Fragile X syndrome, or moderate to severe vision or hearing impairments, including deafblindness, across Australia have registered and accessed more than 53,000 early intervention services.

That number will continue to rise.

Just last month we announced a further $13.4 million over five years to the program, to allow hundreds more children with disability to access Better Start.

Our investment means that from 1 January next year, children diagnosed with Prader Willi, Williams, Angelman, Kabuki Make Up, Smith-Magenis, CHARGE, Cornelia de Lange, Cri du Chat syndromes and microcephaly can all access Better Start funding for the first time.

We expect that this additional funding will help about 1,200 more children access crucial early interventions.

The decision to expand the program to include these additional eight conditions was based on expert advice on the evidence on the effectiveness of early intervention for these groups.

NDIS and early intervention

All of us here know that investing in early intervention for children with disabilities before they get to school gives them the best chance of reaching their full potential.

We also know that early intervention doesn’t just help children with disabilities but anyone who experiences a significant event resulting in disability.

Early intervention is one of the key pillars of a National Disability Insurance Scheme.
Because any one of us, or someone close to us – can fall off a ladder, misjudge a dive into a waterway, or have a stroke – and get a permanent disability, at any time in our life.

Disability doesn’t discriminate.

On average, every 30 minutes someone in Australia is diagnosed with or acquires a significant disability.

And even today, in Australia, disability equates to disadvantage.

People with disability, their families and carers are among our nation’s most disadvantaged groups in terms of social isolation, financial status and personal well-being.

We have a cruel lottery where the support people with disability, their families and carers receive depends on where they live, what disability they have, and how they got that disability.

Doing something different is desperately needed in our disability services system.

We know that the current system is broken. We have heard that message loud and clear.

We have listened to the stories of people being bounced from service provider to service provider, unable to get the sort of support or assistance they desperately need.

Recognising that this had to change, our Government asked the Productivity Commission to examine reform of disability support services.

“Underfunded, unfair, fragmented, and inefficient, giving people with disability little choice or certainty over the care and support they receive” was how the Productivity Commission described the system.

The Commission recommended the establishment of a National Disability Insurance Scheme.

The scheme will provide the support and services Australians expect to see for people with disability, their families and carers.

An NDIS will insure all Australians against the cost of significant disability, and provide care and support for about 410,000 people with significant disability.

It will transform disability services in Australia. Rather than funding being doled out and rationed in response, in many cases to a crisis, funding will be purely based on need.

It will recognise that disability is for a lifetime and will take a lifelong approach to providing care and support.

This is an historic reform; a reform whose time has come.

A total transformation, rather than incremental change, is required to provide adequate support for people with disability who need assistance with daily activities such as communication, mobility, self-care or self-management.

There is a tremendous amount of work involved in building an NDIS.

An important part of the preparatory work has been canvassing the views of those directly impacted by the NDIS – people with disability, their families, carers and those working in the field.

One of the most important messages we have received from is that it is vital that we explicitly include ‘early intervention’ in the definition of eligibility.

As I said earlier, support for early intervention is a key pillar of an NDIS.

But the feedback we received drove home to us the importance of stating this upfront.
As a result of this feedback, early intervention is explicitly included in the draft legislation.

This means an NDIS will fund interventions that will minimise the impact of a person’s disability from its diagnosis and onset – helping to improve their functioning or prevent the progression of their disability over their lifetime.

Because we all know that evidence based early intervention makes a huge difference to the development and independence of adults and children with disability.

And this is where the ‘I” in NDIS comes in – Insurance.

We know that once a person has a disability, for most it isn’t going to go away – and that they will always be receiving services from an NDIS.

So it makes sense for an NDIS to invest early with interventions so that a child with Autism or cerebral palsy can hit those developmental milestones, go to school and then go on to get a job.

As you all know, if we provide best practice and evidence based interventions at the right time, the progress can be outstanding and these kids can go on to achieve their goals.

A system based on insurance principles also makes financial sense – it is cheaper over the lifetime to invest early, to get results, so people can live a more independent life.

An NDIS will change the way disability care and support is provided. It will provide peace of mind for people with a significant and permanent disability and those who care for them.

NDIS Implementation

Minister Macklin recently detailed some of the important elements that will be part of the legislation set to be introduced to Parliament in just a couple of weeks.

This will allow our government time to continue with the necessary and extensive work required as we prepare for a launch of an NDIS in five sites from the middle of next year.

We anticipate that the legislation will be referred to a Parliamentary committee so that we can get feedback from people with disabilities, families, carers, service providers and allied health professionals.

The legislation will set out the core elements of the scheme, including who is eligible and establish a definition of reasonable and necessary support.

It will also establish the NDIS Launch Transition Agency as an independent body.

It will allow the Agency to work with people with disability to identify their goals and aspirations as part of the process of developing a personal plan.

The plan will give people certainty by better connecting them to mainstream and community services they require and detailing the packages of supports they will receive.

Importantly the plan will also include strategies for maintaining the sustainability of informal care. The legislation will also allow participants to manage their own funding if they wish – because we know more flexibility and choice is what many people with disability want, so they can get the right support when they need it.

Under the legislation, the Agency will work with service providers to make sure that services are of high-quality and meet people’s needs.

And to ensure a fair and equitable process, the legislation specifies that individuals can seek a review of NDIS decisions.

This framework for the national scheme will ensure individual people with disability across the country are given care and support based on their needs, and will give them access to real choice and control over the provision of these supports—meaning more control over their lives.

I am pleased that everyone is pulling together to prepare for the launch in the Hunter in New South Wales, the Barwon in Victoria, and in South Australia, Tasmania and the Australian Capital Territory.

These sites will benefit more than 20,000 Australians with disability.

And whilst we are preparing for the launch in these sites, all states and territories are participating in the design of a scheme and being consulted in the legislation.

So it doesn’t matter where you live or how you acquired the disability, you will be provided with support and services to live a full life.

Service Providers and the NDIS

I am conscious that there are some people with disability, their families and carers who are concerned about the implications of transitioning to an NDIS and what it may mean for the viability of the services they currently receive.

And I know that some service providers are also keen to know what their future will look like under an NDIS and are anxious about what they need to do to get ready for its introduction from 1 July next year.

I want to assure you that allied health professionals, including occupational therapists like yourselves, will play a critical role in a National Disability Insurance Scheme.

As I said earlier, an NDIS will have a strong focus on early intervention, particularly for people where there is good evidence that early intervention will substantially improve functioning, or delay a decline in functioning.

And as a result, I know that that the demand for all allied health services and other supports will only grow with the launch of an NDIS – so there will be plenty of opportunities in the future.

You and your colleagues are important to the success of an NDIS and to ensuring that people with disability can live the life they want to live.

We will also need allied health professionals like you to work for the NDIS Transition Agency as planners and complete assessments.

We see the staff of the Agency taking a multi-disciplinary approach to ensure participants are well supported through the NDIS process. This also means helping individuals build their personal capacity, to express their needs and goals, and to make their own choices about the services they receive and what they want to do.

We recently put out an expression of interest for people to work for the agency in these roles and have had a huge reaction – more than 450 responses, half of which are people with disability, have been received to date.

We also need an NDIS to provide innovative supports to people with disability. We see allied health workers and other professionals working together to provide the best outcomes for people with disability eligible for the Scheme – like remote service delivery that utilises the NBN.

Design/Agency

We understand that ensuring the disability sector has the ability to harness the opportunities available in an NDIS world is absolutely critical to the Scheme’s success.

And we know that this needs to happen for the five launch sites.

We have committed $1 billion for the first stage of an NDIS.

The development and implementation of this first stage will test key features of the new scheme, including how to provide support on an individualised basis that gives a person with disability choice and control, and how to manage disability care and support on the basis of insurance principles.

Part of the $1 billion commitment to the first stage of the NDIS includes almost $123 million to help start preparing the disability sector for the new way of delivering services.

An NDIS will involve individually funded support packages for many people.

People with disability who are eligible for services in the scheme will be making choices about the supports they receive and the providers they use in a market based environment.

Overall, we are acutely aware that we need to manage the transition to an NDIS well.

It will not be a matter of waking up one morning and telling people an NDIS has started, then sitting back to see whether the new Scheme works.

As we prepare for the launch, we are looking very closely at what works well currently, and how we can build on this under the new Scheme.

We are very keen to ensure that the existing knowledge base about service provision that has been built up over many years is preserved and used to inform future supports.

If people with disability are to be able to exercise choice and control, they need to have around them high quality, diverse and responsive providers.

We also recognise that many providers, and of course many people with disability, will need support to move into the new way of working.

As a part of our conversations with service providers, we will talk to them about what support they would need to be able to move to an NDIS.

I urge all of you here today to actively engage in telling us what works – early on in the process.

I especially urge you to work with the NDIS Launch Transition Agency, which is tasked with examining parts of the NDIS pathway in collaboration with potential NDIS clients.

The NDIS Launch Transition Agency will soon be talking in detail with existing service providers in launch locations to find out about service provider views on the challenges of moving to an NDIS – so right here in the Barwon region.

If you work in one of the launch locations in particular, please seek them out, or get in contact with me and my office.

Working together and utilising your on-the-ground experience helps to test whether a government process is ‘ready to switch-on’.

We really want to get this right – for everyone involved.

We want to make sure that an NDIS will allow people with disability, who are already receiving high quality support, to continue with their existing arrangements under an NDIS.

An NDIS will bring significant increases in spending to better meet needs and enable individuals to make progress towards their goals. This presents a huge opportunity for providers including allied health professionals.

We want to make sure that your views are represented from the onset, so that you also have the best outcomes.

The national rollout will be informed by the lessons we learn from this first stage.

Conclusion

A National Disability Insurance Scheme will give all Australians the peace of mind to know that if they have or acquire a disability that leaves them needing daily assistance with everyday life, that they will be supported.

This means building a sustainable system that is insurance based, and which will insure all Australians for the cost of care and support in the event of significant and permanent disability.

The main changes will be aimed at those who are most in need, providing long term, high quality support for around 410,000 people who have a disability that significantly affects their communication, mobility, self-care or self-management.

It will also cover people for whom there is good evidence that early intervention would substantially improve functioning like autism, acquired brain injury, cerebral palsy or sensory and those for whom early intervention will delay or lessen a decline in functioning for example, multiple sclerosis and Parkinson’s disease.

It will take account of a person’s situation and needs, including their aspirations, their support network and their potential.

An NDIS will look beyond immediate need, and will focus on what’s required across a person’s lifetime. This means recognising that at different life stages, funded supports might change as new needs arise, or transitions are successfully implemented.

Importantly, an NDIS will recognise the critical role of friends and families as carers, and will invest to help nurture and sustain the informal care system to improve the wellbeing of carers.

It will also provide a comprehensive information and referral service.

As occupational therapists, you have a huge role to play in this exciting new future.

I look forward to working with you, to help build a new and better future for people with disability, their families and carers.

Thank you for listening to me today.

I am now happy to take any questions you may have.