'Whanau Ora - Whanau Choices: What is our part in this?'

I have a special pride in being asked to speak here today at the national Maori disability providers’ Hui Taumata.

Last year I had the honour of launching Te Piringa at your hui at Kairau Marae in Taranaki – within my electorate of Te Tai Hauauru.

Even though it was a launching - I knew that the inaugural Maori Disability provider hui had been some five years ago, at Te Puea Marae, Auckland in June 2006. And that between then and now there had been other Hui Taumata held at Huria Marae, Tauranga in November 2007, and Pehiaweri Marae, Whangarei in March 2009.

And that’s exactly how it should be. The years of hui, of korero, of preparation have put the kiko into Te Piringa – it has fleshed out the substance of your vision; the reason for your being.

As you have travelled across different rohe, you have picked up the various issues impacting on disability providers – the shared concerns and the unique regional variations all provide an edge to your knowledge.

And I understand that at this hui too, as well as speakers representing Whanau Haua there will also be the presence of Waikato Tainui shaping and influencing the debate.

I want to congratulate your new chairs Sylvia Willison of Waiariki and Janice Gardner of Te Taitokerau for being willing to take up the challenge in leading your roopu forward, in your common commitment to improving the services for disabled Mäori.

As you will all know, the vision of the New Zealand Disability Strategy is of a fully inclusive society and to achieve this goal it is important that the voice of our whānau with disabilities is heard.

It is only when we listen to the voices of our disabled people that will we know how best we can assist and support.

In this sense, I am proud today, to launch the Uia Tonutia - Māori Disability Research Agenda.

The aim of producing the Agenda was to collaborate with whānau living with disability and identify and prioritise research directions that would contribute to improving health outcomes for Māori and tackling inequalities experienced by Māori with a disability.

The Ministry of Health, together with the Health Research Council of New Zealand, developed the research agenda on Maori disability. The project was undertaken to address a concern that health research, particularly on disability, rarely focused on Maori.

The Agenda was informed by 304 participants made up of whānau living with disability, unpaid whānau carers, kaumatua and others. I am really grateful for their commitment in sharing their views with a greater audience.

Better information about the impact of disability on Maori and their whanau will mean more informed decision-making at both health and disability and community sector levels. It will also enable whanau, hapu, iwi and Maori communities to have a greater role in decision-making – and all of this helps us to help ourselves.

I am really pleased that you have focused your hui on the question Whānau Ora – Whānau choices: What is our part in this?

It reminds me of a conversation I had with one of my sons a few years back. I was asking about the situation one of my mokopuna found herself in, and my son gently suggested that I mind my own business.

I replied – just as gently – that actually his business, her business, our business was my business too – and that there was no greater role and responsibility in my life than that of being a mother and a nanny.

Our whanau is our business. There is no choice when it comes to whakapapa – to be born of whanau is a lifelong commitment.

In the mahi you are involved in, the role of whanau is paramount.

Needs Assessment and Service Coordination organisations and other disability support services in New Zealand, rely heavily on whānau caring for whānau.

Whanau are our natural circles of support – circles which can be ever expanding through the friendship and tautoko of others such as friends, neighbours, schools, sports teams, or church groups who help with the stuff of everyday life.

As I understand it, one of the first things done when someone is referred to a NASC is to assess the informal support the person already has – that is, who they are already connected to.

The amount of informal support they have is determined through interviews with the person, their family and friends, their clinicians, and with anyone else the person wants involved. Another purpose of the interviews is to help determine the person’s goals and objectives.

With the information they have gathered, NASCs develop a support plan for the person to help them achieve their goals and objectives.

The plan treats their existing support network as a platform, and then looks to patch any holes or weaknesses in that platform using disability support services and other services, such as those from NGOs (for example, the Royal Foundation for the Blind and Altogether Autism).

I will be interested to hear from you whether the process as I have outlined it, works well and in the interests of whanau haua.

The whole idea is to supplement existing relationships, not to replace them, and thereby help the person to meet their goals and objectives and to live as independently as possible in their own home or community.

And yet I have heard concerns from some, that rather than building and strengthening the capability of whanau to be self-determining – to care for their own – sometimes it leads to a dependency or reliance on outside services instead of our own natural support.

We also know that whanau need support to provide the care and support for whanau that is required – we need to create the optimum environment for whanau to care for whanau by ensuring there is equal access to the full range of services they may need.

The issues and concerns that have come forward from disabled persons and their whanau have provided me with reason to push for a New Model to better support disabled people. This has been approved by the Ministerial Committee on Disability Issues and, subsequently, by Cabinet.

A vital background to the new model is that Disabled people have told the Ministry of Health that the way it allocates resources, buys services, and the way these services are delivered, limits their ability to live the life they want.

The New Model will give those receiving disability supports greater choice over what they receive and how it is delivered, by moving towards allocated funding rather than allocating particular types of services. This will give people with disabilities more choice.

It will also ensure that accountability arrangements are in place, not only for providers, but also for the Ministry and disabled people and their families.

There will be a stronger focus, through quality monitoring, on whether people are living the life they most want to be living.

Connected with the New Model are Local Area Coordinators, who will travel alongside people with disabilities in their area. The coordinators will help people to find the options available in their area and, where needed, to access government funded supports. This should allow whānau, hapü, and iwi to be better included in planning and delivering supports.

The Ministry has contracted Inclusion Aotearoa to support the demonstration of the New Model in Tauranga/Western Bay of Plenty. A Local Working Group established for the project includes a predominance of disabled peoples and whānau with strong Māori membership and some provider membership is providing very valuable local knowledge and connections.

Introductory meetings have been held with the Mayor, District Council, Pacific leaders and presentations have been made to many groups and organisations, including most recently a disabled person's consumer hui at Puawairua Marae, near Whakatane. There has also been two meetings with Nga Mataapuna Oranga PHO about their Whānau Ora work, and there will be ongoing dialogue with them to ensure a shared understanding of each other’s models, and to identify ways of working together when both Whānau Ora and New Model supports are available.

Finally, I want to share with this group, my delight at the positive level of response by disabled people to Government’s request for feedback on our first report to the United Nations on the implementation of the United Nations Convention on the Rights of Persons with Disabilities.

This report was delivered to the United Nations on 25 March 2011. It illustrates that New Zealand is relatively advanced in its implementation of the Convention and considerable work has been achieved across all articles.

At last year’s launch of Te Piringa, I announced the Government’s investment of $2.34 million to help promote, protect and monitor the rights of disabled people. This included committing $750,000 to resource a network of disabled person’s organisations to monitor disabled people’s experience in living their life.

This helps meet our obligation under the UN Convention on the Rights of Disabled People to support the independent monitoring of the implementation of the Convention by disabled people's organisations – who know their needs best.

The Convention Coalition, consists of the Disabled Persons Assembly, Association of Blind Citizens, Deaf Aotearoa, Ngati Kāpo, Nga Hau E Wha and People First, and they presented their first report to me in December 2010.

Their report has been instrumental in highlighting areas where improvements need to be made so that disabled people can achieve this everyday life.

I am really proud to have such a strong source of guidance to assist our next moves. It encourages me greatly to know the voices of disabled persons will inform government work, and will also provide guidance to others – employers, local government and communities – to help them get a better deal for disabled people.

And most of all – it helps all of our whanau to know we can all do more – how we can make our business the best we can be – whanau doing it for ourselves.

The report to the United Nations will act as a baseline for future reports and will help inform improvements for disabled people in New Zealand. There is a part for all of us to play in giving life to the Convention.
We all need to promote the messages and the rights of the disabled and to be involved in ensuring that disabled people can live an everyday life.

There is so much we can be proud of. We must make sure we build on our successes so that positive change will continue. I am absolutely confident that Te Piringa – the National Māori Disability Providers – will play an important role in helping to shape the direction of our policy and practice to bring about a better future for whānau everywhere.

Thank you, again, for allowing me to be included in this very important Hui Taumata and I look forward greatly to receiving your final deliberations out of your korero.