Address to IHC Southland Parents Conference

Good morning and thank you for inviting me to speak to you today. I bring warm greetings from my colleagues Mark Peck and Mahara Okeroa. And I congratulate Tim Shadbolt for being re-elected unopposed as your mayor!

I know that some of you have travelled a long way, and I want to thank you for giving up your precious weekend to attend this conference. It’s a measure of your commitment to your kids, and an indication of the support you get from other parents and IHC that you have made the effort to be here.

I want to acknowledge Jeff Sanders, IHC’s acting chief executive, (we seem to be following each other around the country, Jeff) and all those who have helped organise the conference. There is a great line-up of workshops, and I’m sorry I can’t stay for some of them.

I particularly liked the description in the conference programme of the NASC workshop – “unlocking the mysteries of the Needs Assessment”. Perhaps when you’ve done that, you could give me the key as well!

I must say that a review of NASC is my top priority. I’m getting very inconsistent messages about NASC around the country, including the message that for many, NASC is the main obstacle to people receiving good services rather than the entry point.

The original concept of NASC was good – putting the person with the disability at the centre of the equation, assessing their needs (as defined by themselves and their family) on an individual basis, and actively securing the best possible package of services to meet those needs.

In practice, however, the concept is becoming increasingly unworkable. The process is inconsisent, and is being used as a budget manager. As NASC provider Lorna Sullivan described it recently, it has become "a gateway to limited resources", where needs "are defined from within a very limited range of possibilities identified on a standardised assessment tool".

We have to try to get the disability part of NASC away from the medicalised model while, at the same time, ensuring better integration and coordination between all areas - health, disability, transport, education, housing and so on.

The logical outcome of the review is that NASC should be much more community driven and individually responsive, and at the same time better integrated. More funding is needed in some areas, more trained staff and others, and overall, better integration of government departments and agencies which will make our funding and our staff work better for us. I would be very interested to hear your ideas about how best we can make improvements.

NZ Disability Strategy
Before I comment on some of the other workshop topics, I want to talk a little about the New Zealand Disability Strategy.

It's a little over five months since the strategy was launched with considerable fanfare at Parliament and in several other venues around the country.
Already it is changing the way that government departments, local authorities, service providers, NGOs and people with disabilities themselves think and work.

The strategy's 15 objectives cover things like human rights, education, employment, leadership, support systems, community living, and lifestyle choices for people with disabilities. Maori, Pacific peoples and women face specific barriers which are recognised under separate objectives.

There are two other objectives which will be of particular interest to you. One is “to enable children and youth with disabilities to lead full and active lives” and the other is to “value families, whanau and people providing ongoing support”, who – as we all know - carry an enormous and often unacknowledged load.

The objective about valuing families and whanau has eight actions. (You probably know them off by heart.) They include ensuring that:
·needs assessment processes are holistic and take account of families’ needs;
·families are provided with education and information that is accurate, accessible and easily found;
·families have the opportunity for input into decisions affecting their family member, where appropriate;
·families are involved in policy and service development, delivery and evaluation, where appropriate; and
·there is debate around responsibility for caring, payment for caring and how to further recognise and value the caring role.

On this last point, you may be interested to know that I have set up an inter-departmental group to review the government's policy regarding families who apply to be paid caregivers for family members.

Two things prompted me to do this - the expiry of the government's exemption under Section 151 of the Human Rights Act at the end of 2001, and the recent Complaints Review Tribunal decision regarding Allan and Gene Hill's complaint against the IHC and Health Funding Authority.

As you are no doubt aware, the tribunal's decision acknowledged the rights of family members, including parents, to apply to be paid caregivers for one or more of their family.

The inter-departmental group is being led by the new Ministry of Social Development, and includes officials from ACC, Health, Social Services and Employment, and Child, Youth and Family.

It will look at the criteria used by all government departments and agencies when funding caregivers, and come up with recommendations which, I hope, are fair and consistent across the board. Again, I would be very interested to hear your views.

Government work plans
The strategy sets out our vision of a fully inclusive society which values people with disabilities and continually enhances their full participation.

I encourage you to use it as a tool for change when you’re dealing with departments, officials, local authorities and so on. One of the things that has delighted me most in the last five months is the number of people I have seen waving the document around at meetings, who seem to know it off by heart and are quoting from it directly to strengthen their arguments.

I always intended it to be a living document, not one that would sit at the back of a bookshelf in Wellington, gathering dust – and people with disabilities are making sure this doesn't happen either.

I also hope you will read the work plans developed by 11 government departments, setting out how they will implement the strategy in the coming year. They’re available on the NZDS website – and they’re another tool at your disposal.

From 2002, all departments will be expected to prepare annual plans, and will be monitored against them. This practical checklist is the way we will measure our progress and achievements.

To be blunt, a lot of change is needed within departments and the public service workforce, let alone to policies and services. That’s why in this first set of plans you will see that many departments are having to focus on basic infrastructural issues such as human resources, physical access, communications and consultation, staff training and information.

Change in attitudes
Both inside and outside government, changing people's attitudes is the biggest task ahead. During consultation over the strategy, people with disabilities clearly identified negative attitudes and behaviour as the greatest barrier preventing them from participating fully in our communities.

This is a challenge for us all. It's not something money can fix - or governments, for that matter. Each of us needs to ask ourselves whether we judge people by what they can't do rather than what they can do. Imagine if we judged Kiri Te Kaniwa by her inability to play netball.

How do we change attitudes?

Events like this change attitudes, by bringing people together, informing them and helping to build the profile of people with disabilities and the disability sector.

Communication changes attitudes. The Like Minds Like Mine media campaign, where high-profile New Zealanders share their experience of mental illness, is a powerful tool for breaking down prejudice and misunderstanding. I am keen to support a similar media campaign for people with disabilities.

Education of key staff and decision-makers changes attitudes, which filter right through organisations. In some parts of the country, people with disabilities are setting up partnerships with local authorities and government departments. DPA Auckland, for example, is now physically located in the Auckland Ministry of Health offices, has taken responsibility for some projects and is involved in team meetings.

This is having a big effect on both parties. It’s giving departmental staff a day-to-day disability perspective, and it’s helping people with disabilities understand the challenges of working inside a bureaucracy.

The experience has also made DPA – as a consumer advocacy group - consider the gaps in its own relationships within the disability sector. The result is a new organisation called DEAS (not to be confused with DIAS). DEAS stands for disability empowerment, advocacy and support, and it has four arms – generic, Maori, Pacific, and families and parents.

I met with this group earlier in the week, and they are really excited about the links they have forged. As one of them said, “We need to build a true partnership relationship with each other to give integrity to the rest of our work”.

Vocational Services Review
I see that you have two workshops focusing on employment – one on supported employment and the other on ORS funding and the transition from school to work.

You will know that a few weeks ago I released the long-awaited (and overdue) review of vocational services, Pathways to Inclusion. During the review, people with disabilities made it very clear that they want services that help them find work. This is particularly true of young people who, having experienced a mainstream education, rightfully expect a mainstream job.

From now on, employment will be the main focus of vocational services funded by government. We will do everything we can to make sure people with disabilities have the opportunity to gain real skills and real jobs, with the same rights and conditions as other workers.

As part of this commitment, we are going to repeal the Disabled Persons Employment Act 1960. The act treats people with disabilities unfairly by giving sheltered workplaces a blanket exemption from minumum wage and holiday provisions for their workers. When it is repealed, people with disabilities in an employment relationship will have the same rights and entitlements as everyone else.

Changes will be phased in over five years to give providers and consumers time to adjust to the new environment. This will ensure that there is minimum disruption to the sector and that people with disabilities continue to have access to vocational services and opportunities.

Transition review
Transition from school to work presents its own challenges, and I am now considering a review of transition education arrangements.

Transition from school often causes high levels of anxiety for parents of young people with significant disabilities, and for the young people themselves. Once out of school, there is no longer any guarantee of regular support away from home for continued learning and meaningful activity.

So it is understandable that many young people with disabilities stay on at school until they are 21. The current funding arrangements encourage this.

This does not seem to be the best way to prepare someone for a good, confident start in the adult world. By staying on at school for so long, they lose their peers and valuable years of life experience.

I would like to see young people with disabilities given more opportunity to move into supported employment gradually, beginning at an earlier stage, as it suits. I would be interested in your thoughts about how this could be achieved.

We need to keep our eye firmly on what our goal is. Young people - especially young people with disabilities - are very vulnerable and they can be easily ripped off as cheap labour. Our goal is not to get a person out of school. Nor is it to get them into a job. It is to find them meaningful employment which recognises both their human rights and their employment rights.

Advocacy
Finally, in relation to your workshop on ‘advocacy in education’, I want to mention that the Office of the Commissioner for Children has received funding to provide an Education Advocacy Service.

One arm of this service will train and coordinate a nationwide network of community-based child advocates to help students and their caregivers resolve education-related problems.

The three aims of the service are to:
·provide positive outcomes for schools and students by maintaining students within the education system;
·reduce barriers to learning which are created by conflict between schools, students and parents; and
·improve relationships between the school sector and the community.

It is very hard for parents and caregivers to take on the school system when things aren’t working for their children – as I’m sure some of you in this room have discovered - and I’m delighted that this independent advocacy service will soon be up and running.

In education, as in all areas of society, inclusion of people with disabilities is our aim. It’s also the aim of the New Zealand Disability Strategy. I look forward to working with you in the future to implement this groundbreaking document, which Gary Williams, head of DPA, has described as "the most important thing that has ever happened to people with disabilities in New Zealand".

Once again, thank you for inviting me to speak to you today. I wish you all the best in your discussions, and now I’m happy to answer any questions.