NZ Association for the Study of Intellectual Disability

As the wind whistled in Wellington last night, and the storm raged on, I put on my winter socks, wrapped up warm, and predicted there would be snow in the air.

For some people, the attack of all of the elements would signal the winter blues - something to be put up with until the sun shines again.

But for me, the season of winter is something to be treasured. I love the fresh chill in the air, the crisp rustle of frosty grass on the lawn; the early morning dew, the soft rain we call Tomairangi.

And I think to myself, to know the beauty of a snowflake it is necessary to stand out in the cold. 

It's all a matter of perspective.

Perspective is the reason we are all gathered here - to share stories, to hear different views, to strengthen our knowledge, to improve our practice.

I was delighted to be invited to open the annual conference of the New Zealand Association for the study of intellectual disability.

From the programme alone, this annual meeting looks to be over-flowing with good ideas and insights which will sharpen our theories around intellectual disability. And most important of all, these sessions will provide a solid foundation for making our practice more responsive, more effective, and more sustainable.

One of the particular themes that will come through the keynote sessions is the critical importance of family engagement to the successful life journeys of disabled persons.

Professor Gwynnth Llewellyn puts words to the passionate belief that I have, in finding health and social policy and practice solutions to enable disabled individuals and families to fully participate in our societies.

I really like the emphasis on fitting solutions around family, rather than fitting family around the different models of care.

Forums such as this are vital for promoting the study and understanding of intellectual disability; for focusing on the rights of people with intellectual disability; and for establishing a place to talk and think and share our knowledge about principles and standards and policies and practices.

But the best theory will amount to little more than words, unless we can put it into practice.

It reminds me of a story I heard about a young man with cerebral palsy, I'll call him Tama.

Tama used to spend hours upon hours watching his favourite movies. There was nothing that gave him more joy than when the TV was switched on, and the opening credits started to roll.

But for Tama, it was not so much the plot or characters that generated his excitement. He was fascinated by the credits - who played what role; what music was used in the film, where the movie was shot.

And gradually, everyone who sat with him, while he studied the various movies, started to also develop an interest in the story at the end of the film - the people that made it happen. 

Instead of switching off, they started seeing the film through different eyes - Tama's eyes.

This is what I think we mean by an accessible New Zealand - a society where our emphasis is on enabling each other to appreciate the world we inhabit; rather than a disabling society in which we only focus on the walls and boundaries that cut us off from each other.

As Minister for Disability Issues I have two key roles that I am asking other Ministers to concentrate on, right across their work.

The first is to ensure that all government services and communities meet the needs of all New Zealanders, including disabled persons, as articulated in the New Zealand Disability Strategy.

The second is to ensure that initiatives and supports targeted at disabled persons and their families work well for them, are fairly distributed and represent value for money.

Just as Tama was fascinated more by the credits than the movie itself, our goal as a society, as a Government, as families, must be to ensure that we respond and recognise the needs that disabled persons set for themselves, rather than what we think is best for them.

In the case of another young woman I knew, the state was investing ample amounts of resource in her care, targeting her as having high needs.

And yet the most intense of all of her needs, was to be back with her family; to enjoy the love of those who knew her best.

The problem was that for her family, the 24/7 care that was required presented a relentless challenge that simply wore them down.

It got me thinking. How can it be that the state had more than enough resource to inject into her residential care, and yet the family were struggling to find any support to help them meet the obligations and responsibilities they held dear?

It comes back to making the theory adjust to the good sense of every day practice.

At this conference there are researchers, practitioners, family members, behaviour specialists, self-advocates, support workers, and community leaders - all of you with an interest in doing the best that you can, to support those with intellectual disability.

Government also has an interest in doing the best that it can, with the resources we have available to us - a challenge that is particularly relevant in times of economic restraint.

And so I want to signal to you that I am looking very closely at the way we currently operate the needs assessment service (NASC) - and the way it works in practice. 

I want to know whether the NASC model is supporting people with disabilities to live as independently as possible, while also promoting and appreciating inter-dependence.

How does the theory of NASC work in practice? How does it build on existing and informal networks already in the lives of disabled persons? What emphasis is given to the everyday joy of an ordinary life - the walk to the mall; the visit to the library; time to share the beauty of the snowflake?

I am interested also in the model of Local Area Coordination and how that serves to build family and community self-sufficiency.

Of course, having knowledge of such models is one thing - but with a little help from my friends here today, I hope to also gain knowledge about the issues impacting on the intellectual disability sector - issues such as high staff turnover, an ageing workforce, funding constraints and increasing costs are all hot issues that I want to hear more about from all of you here today.

The key to me, is in ensuring all the perspectives are heard; the different world views shared. 

I know that if organisations do not have proper funding, services will be compromised; and if services are compromised families find themselves with only limited options.

I know too, of the desire from disabled persons to belong, to define, to choose to live with the families; to be able to access excellent health care, education, employment and other community services, and most of all to enjoy the quality of life we should all take for granted.

Ultimately, no matter how good our collective knowledge is, our greatest challenge must be to make the difference in practice.

With this in mind, I wish the 6th NZASID Conference all the best for a stimulating and supportive two days; as I declare the conference officially open.