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Opening of new accessible Muscular Dystrophy premises

Hon Tariana Turia
Minister of Disability Issues

22 February 2013

Muscular Dystrophy Event
Opening of new accessible premises
Penrose, Auckland
Speech delivered on behalf of Minister Turia by MP for Maungakiekie, Peseta Sam Lotu-Iiga

I want to thank Helen Melrose, your chairperson - and Chris Higgins, your chief executive for the invitation to visit these wonderful accessible premises - premises by which I predict the Muscular Dystrophy Association will be known by.

The open plan environment - the spacious floor area- the bright atmosphere will soon become the benchmark, I hope, for accessible buildings.

It is a living demonstration of the campaign that you have promoted as an association, ‘Living life with less boundaries.’

I really love that concept. It represents your belief that people living with neuro-muscular conditions should have unrestricted opportunities to achieve their full potential.

The notion of boundaries can be both positive and negative.

When we think in the context of whanau we may think of boundaries as providing our children with certainty and security from which they learn to distinguish right from wrong. It is that sense of knowing the limits of your world, and being free to grow within that.

Where this becomes problematic is when the limits become forced upon us - a seemingly impenetrable wall that acts to separate and exclude us from the world around.

I do not deny that the muscle wastage associated with this condition can be devastating for those diagnosed and their families.

But – and it’s a big but – the support and information that can come from an organisation such as this is a vital resource to help support families living with neuromuscular conditions.

And in this way, we know the opportunities are limitless for individuals and families to be supported to live a fulfilling life.

The actor Daniel Day-Lewis epitomises the type of spirit that I think is encapsulated in the vision of your Association. He once said:

Whenever we reach what we think are the boundaries of our endurance, you know ten minutes later you`re thinking ‘I could have done that - like in any athletic pursuit - I could have gone further than that - I could have jumped higher.’

So today is about living up to that challenge to go further – to be as independent as possible, to enjoy the full rights of citizenship. It is about enabling people with muscular dystrophy to be free to choose how you live your life, on an equal basis with others.

Accessibility of the built environment is one key factor which breaks through the boundaries, and underpins the ability of disabled people to move around and live an everyday life.

As Minister of Disability, I have been a great fan of the notion of lifetime design in Housing and have been pleased that both with Housing New Zealand Corporation’s new build and lease houses - and also in the wider private sector, we have been promoting the work of Lifetime Design.

Here in Auckland, you are particularly blessed with the Accessibility Champion, Minnie Baragwanath. The leadership she has initiated right across government with her Be.Accessible message has been a significant driver in promoting accessibility for businesses and services.

It is about all of us sharing the value of accessibility and making sure it happens in practice. We don’t want to leave it too late – accessibility has to be deliberated planned for - in the design and build stages.

That is why these premises must be seen as an exemplar of accessibility that I firmly believe can help lead the way into becoming a fully inclusive society.

I wanted to particularly make some comments today about the contribution of the philanthropic sector in helping change happen throughout our communities.

And I want to mention some of the extremely generous funders who have helped to sponsor these premises, including Graham Wilkinson from Retirement Assets Limited and John Sax of South Park.

Without your generosity these new premises, and indeed the services of this Association, would not be able to be sustained.

Thank you for your commitment and your vision.

Accessibility, of course, is not just about curves and ramps. It is just as powerfully about attitudes and behaviours.

I am a firm advocate for enabling disabled people to be at the centre of their own development and support – allowing them to determine for themselves how they want to live, and what support they require.

Your fieldworkers provide valuable support to individuals and families that can help them to get on with their own lives. It might be specialised health and disability services - visits to people at home, or ways and means to ensure participation in the wider community.

It is also about recognising that essentially the best people to tell us about the aspirations of people with muscular dystrophy are people with muscular dystrophy – in their own words and through their experiences.

Last year I established an independent working group of disability sector representatives to think about the right daytime supports that Government could be providing to disabled people if they are not working.

The independent working group confirmed that disabled people want supports that are:
• Self-directed and give them choice and control over their lives
• Take a whole of life approach rather than being split across multiple programmes
• Support them to live an everyday life everywhere
• Are mana enhancing
• Build and strengthen relationships between disabled people, their whanau and community.

These principles resonate with your vision – ‘Living life with less boundaries.’

And I want to say I fully support the thinking about simplifying the system so that people can just plan for all aspects of their lives at the same time. It doesn’t make sense to say restrict our support to day activities when a person might rather use that resource to support themselves in a job.

We are calling this new direction – the Enabling Good Lives approach. It is about looking at the best arrangements to become connected with the wider community, to align your services with others in order to support families and disabled people to think about what a good life means to them.

Enabling Good Lives is about creating plans through making informed choices. It is about deciding how the resources assigned to you should be best used - how you manage that resource – whether an agency under your instructions or a provider paid to deliver a service to you.

Enabling Good Lives will be seen when all support is coordinated and works well together. We want to avoid the trap of requiring people to undertake multiple assessments or submit a range of funding applications just in order to get the support you need to live well.

And most importantly of all, it is about recognising and valuing the vital role that family, whanau and friends play in keeping up the momentum to go further, to jump higher, to have our sights set on the stars.

I strongly believe that those in our personal networks that give up their careers to support people living with muscular dystrophy should be entitled to exactly the same support as others across the disability sector. The stress of some situations is remarkable and we need to make every effort possible to alleviate their collective pressure.

Finally, I want to congratulate you on the impact of your bowtie campaign. The symbolism of the image of a bow tie is profound. For those unaccustomed to these accessories, a bow tie can be horrendously complex to tie. It may appear relatively simple but it actually requires considerable skill, dexterity and perseverance.

In much the same way, many of your members will be faced with what appears to be the impossible ordeal of facing everyday tasks. Our greatest challenge is to provide the right support to make all our lives stress-free - to know that we are not alone and that there is always someone out there to listen and support us in confronting our worst fears.

I commend everyone who has joined to make this day so special – to do what they can to support the individuals and families of people with neuromuscular conditions – and to realise the vision of everybody living a great life.

ENDS

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