In fact people working them say 'children with disabilities don't talk too much'. So what's their daily experience like and what do they want to change?
There's only one way to find out, and that is by talking to children with disabilities. The PNG Assembly of Disabled Persons, the Disability Promotion and Advocacy Association Vanuatu , Save the Children, and Australia's Deakin University are setting out to find the priorities and concerns of children with disabilities.
Presenter: Brian Abbott
Nichola Krey, the Country Director of Save the Children in Vanuatu
Elena Jenkins, Deakin Research Fellow
KREY: Save the Children in association with the DPA and Deakin University have been working all this week specifically on answering just that. Deakin has been training together with our child participation officers in how we will communicate with children who can't necessarily communicate through traditional methods and they've come up with a number of fascinating ways to communicate with children through song, through toys and games, a number of ways which we will be trialing over the next two years to gain an accurate understanding of what it is really like to be a child with a disability in Vanuatu.
ABBOTT: you just mentioned two years ,this is quite a long project?
KREY: It's a long project. We recognise that this is not something that can happen quickly. These need to be long conversations that we're having with these children and their communities and developing relationships with the communities we're working in. Communication is not going to happen immediately. A lot of people with disabilities in Vanuatu are currently very invisible. To actually build those relationships and have children starting to communicate with us will take the necessary time.
ABBOTT: How many children do you think will become involved in the project?
KREY: Global statistics indicate that 15 per cent of people live with disabilities. The population of Vanuatu is 230,000 people so there could be anywhere up to 20 - 25,000 children or people with disabilities that we're meeting and talking to.
ABBOTT: Now Elena a question directed to you. What's going to happen to the information that you gather?
JENKINS: We're hoping that it is going to have direct policy implications for government agencies here in Vanuatu. The government is very interested to know what's happening to children with disabilities as well as NGOs and community based organisations. So they will be able to better target the planning and implementation and evaluation of services to include children with disabilities. That is the main aim. Another good reason to do this research is we're developing these tools. No one has used these tools before, no one has asked these questions before so these tools will be developed so that they suit children with a range of disabilities and then those tool will be available for any other organisation to pick up and use.
ABBOTT: Any other organisation throughout the world so this is a fairly ground breaking research project.
JENKINS: Yes, that's right. It is the only research that is happening with children with disabilities in relations to specific sectors such as health or education and they may be asked what's your experience with going to school or what particular failure but no one has asked them to name their own rules or to identify what's important to them or what they'd like to change and I think that's due to a number of reasons. One is that often researchers ask parents directly but research has found that parents don't have the same answers that children provide, and researchers don't necessarily know how to include children with disabilities so we got this unique partnership happening with Deakin that specialises in disability and research with Save the Children who as we know specialise in child participation and at a local and national level organisations disability advocacy organisations. So it's great.
ABBOTT: Is it likely Elena that every child will want something different, particularly each child with a different disability may want something else?
JENKINS: That's true and all children regardless of whether they have a disability will have unique view of their lives and it's a matter for us to then to analyse the data, to categorise and group the data so that we can pick out the majority of priorities that children are indicating so that we can pick out some really clear themes and make some direct changes.
ABBOTT: Has there been extra money promised at the end of this research to implement some of your findings?
JENKINS: There hasn't. This is funded directly by Australian aid and it is a two year project so after that it's really up to us to look at what we can do next or how we can support agencies and the government to include the findings or how we can support other organisations to do similar research in other countries.
ABBOTT: Nichola, it is also being carried out in Papua New Guinea. Do you believe there will be differences between children with disabilities in Vanuatu and children with disabilities in Papua New Guinea?
KREY: As we know Vanuatu and Papua New Guinea are two different countries but there are a couple of common characteristics. Children living in remote areas without access to education and health services and without services specifically related to people with disabilities, so I think we might see a couple of similarities and personally I'm very much looking forward to getting the results.