Address to Visiting Neurodevelopmental Therapists Conference

Good morning, welcome, and thank you for inviting me to open your conference.

You've got an excellent line-up of speakers over the next three days, and I'm sure you are going to be stimulated and challenged by them.

I have been asked to speak for three-quarters of an hour, followed by 15 minutes of question time. However, while I could happily speak for 45 minutes, I believe it would be more useful to reverse the time allotment and spend that time on questions and discussion. As well as talking about government policy and activities and I here to learn about the issues that you face in providing your services.

The work of VNTs fits in very neatly with the New Zealand Disability Strategy. Just as VNTs encourage families to care for their children as independently as possible and to promote each child’s maximum functional independence, so a key aim of the Disability Strategy is to ensure people with disabilities have control over their own lives and decisions about their disability support options.

And just as the principles of integration and coordination are important to the provision of VNT services, so are they for the implementation of the strategy.

The strategy gives us, for the first time, the framework to begin addressing disability issues across all sectors, policies, services and legislation.

At the heart of the strategy's vision of a fully inclusive society lies an acknowledgement of each person's unique identity. The strategy says that vision will be realised when (among other things):

·people with disabilities are integrated into community life on their own terms;
·community-based services ensure that people with disabilities are supported to live in their own communities, and institutionalisation is eliminated; and
·interdependence is recognised and valued, especially the importance of relationships between people with disabilities and their families, friends, whanau and other people who provide support.

One of the strategy’s key specific objectives is for children and youth with disabilities to enjoy full and active lives, in conditions that prepare them for adulthood and which:
·Ensure their dignity;
·Affirm their right to a good future and to participate in education, relationships, leisure, work and political processes;
·Recognise their emerging identities as individuals and reinforce their sense of self;
·Promote self-reliance;
·Recognise their important links with family friends and school; and
·Facilitate their active participation in the community.

Here, in many respects, I could be referring directly to the aims of the services provided by VNTs. There are strong parallels, too, between the ways VNTs provide services and the programmes we are putting in place for children with autism.

You may be familiar with the Early Bird Programme pilots in Wellington and Nelson.

The short-term, parent-focused programme aims to empower parents and other caregivers and help them facilitate their child’s social communication and appropriate behaviour within their child’s natural environment. This is an exciting venture as we see more groups getting involved with the longer-term plans to extend nationwide.

Early indications from the Early Bird pilots have been extremely encouraging. Each programme involves group sessions, home visits and assessment sections. The assessment takes place both before and after the programme and provides information about ASD, how it impairs children’s communication and impacts on children’s behaviour.

A national roll-out of the Early Bird programme, taking into account what is learned from the pilots, is planned to begin next year.

The reason I draw these links with the work that you do is to acknowledge that we are moving in the same direction, we are speaking the same language.

One of the reasons why this Government established the position of Minister for Disability Issues was to give greater recognition to the needs of people with disabilities and the services that support them.

I am sure that you fully appreciate that there is much to be done in many areas, but we are making good progress.
Already there are 11 key government agencies currently implementing Cabinet-approved action plans to promote the inclusion of people with disabilities in all areas of their work, in line with the Disability Strategy.

These plans, which can be viewed on the Ministry of Health's website, include projects relating to human resources, physical access, communications and consultation, and staff training. They include policy and service initiatives in areas such as special education, transport and disability support services.

From next year, all government departments will prepare annual plans of action towards meeting the objectives of the Disability Strategy, and they will be monitored against those plans.

This is creating positive changes across the spectrum of government – including, not least, a greater awareness of disability issues. This in turn will inevitably have a positive influence on attitudes and behaviour of society as a whole.

Turning to some of the issues of concern to VNTs: I have been asked to comment on two specific issues in particular.
Firstly, is the matter of adult-oriented regulations governing the provision of equipment for disability to babies and young children. Your association has pointed out that this does not take account of the changing needs of children as they develop, or of therapists’ ability to actually improve the predicted skills levels.
Secondly, I have been asked how we can be creative with the provision of “area relief packages”. The VNTA says that while intensive therapy in the early years will prevent further disabling, this requires parents’ time, with support from a therapist, yet all too often the only help available is to take the child away from the mother for care relief.
To take the last point first: I would like to hear from you how often you see happening. My understanding is that the child is not often separated from the parent and that when this happens it is usually because the parent desires it or because of exceptional circumstances, such as for the child’s protection or because of the severity of the child’s condition.
Both of the issues that have been raised imply lack of resources, whether it is lack of access to equipment for children, or poor access to therapists to enable them to provide sufficient support for the families and care-givers.
I am also aware that the funding and organisational arrangements for neurodevelopmental services in New Zealand are complex and have led to inconsistencies in the way services are provided around the country. In some areas, for instance, VNTs work with children up to the age of 5 only, while in other places this support continues until the child turns 15.
The Ministries of Health and Education acknowledge the gap between children’s and families’ needs and the level of services that are provided. They also acknowledge the need for improved coordination in funding. They are responding in a number of ways.
First, they are undertaking a review of the protocols that define funding responsibilities for assistive equipment and for occupational therapy and physiotherapy for school children.
The two ministries are exploring ways to encourage collaboration between services that receive funding from both ministries. Options include co-funding some support services.
The review of the protocols involves working with groups of therapists and paediatricians with the aim of building a more bottom-up focus to co-funding support services. There are plans also to convene an advisory group that includes parents.
The Ministry of Education is also funding research into integrated, effective therapy services. This research is just getting under way and is likely to take a couple of years. The intention is to include a joint analysis with the Ministry of Health of the service gaps associated with unmet needs. From this work we will be able to identify more precisely what the funding needs are.
The Ministry of Health is aware of significant delays in meeting children’s equipment needs. The Ministry is planning to soon carry out a review of equipment provision and assessment services and the existing gaps in access and eligibility. This work will feed into the review of the Health and Education protocols.
The Disability Issues Directorate within the Ministry of Health believes there is also a need for further training in equipment needs assessment. One suggestion is a VNT module in a post-grad paediatric course in occupational therapy and physiotherapy. I would be interested to hear your views on this.
Further, the Ministry is working on a paper looking at funding options for paediatric services generally, and this includes VNT services. I will be taking a great interest in its progress.
Finally, as you are probably aware, the Special Education Service is to be merged with the Ministry of Education in February next year.
This is not a reflection on SES on the ground. There have been some good examples of how SES have developed very effective partnerships with schools to provide the best support services for children.
However, there are also examples of total relationship breakdown that has been generated in part by contestable fundholding arrangements which have seen SES become the provider of last resort in many parts of the country.
I am advised by the Ministry of Education that you are not likely to notice any changes when the merger occurs. The Ministry’s primary aim is to ensure a smooth change-over without any disruption to services. The merger is just the starting point of a three-year plan to achieve better coordination

Next year is going to be a year of transition, and the existing fundholding arrangements will remain in place.
The Ministry will be distributing a pamphlet later this week seeking comment from the sector on how all parties concerned with supporting children and their families can do so much more collaboratively and cooperatively. The pamphlet will also be available on the Ministry’s website.
I know that the principles of integration and coordination are important to the provision of VNT services. This will be an important discussion for you to be involved in. I am sure you can contribute a lot to it.
My colleague Lianne Dalziel, who has responsibility for Special Education, recently expressed some of her views on the way forward. Among other things, she said that
·Care must be taken to ensure that additional learning support or behaviour management does not alienate or isolate children from their peers, nor that it create inappropriate ongoing dependence.
·Early childhood education services and schools are points where families and communities inter-connect, and present the opportunity to address wider social and health issues.
·Children do not live their lives in silos for the convenience of funding arrangements; they have whole lives, and the connection between school, home and community must be both supportive and supported; the home environment cannot be ignored when there are problems at school; and
·The earlier that developmental delay or specific learning needs are identified, the earlier that appropriate interventions can be designed and implemented.
I am sure you will concur with most of those views.

We are laying the groundwork for positive change and I am confident that so long as we continue to work together towards the same goal we will succeed in building a much more effective service for children with disabilities and their families.