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Shared decision making with disabled children and young people resource

“Tell a young person what you think, and you lose their trust. Ask a young person what they think, and empower them for life” FLARE (Council for Disabled Children, 2017)

Thanks to the IHC Foundation and CCS Disability Action, I have been working on ways we can better involve disabled children and young people in decision-making.

Disabled children and young people can often experience a lack of voice and agency. As a disabled child, professionals often made me felt inconsequential and cut-off from decision-making processes.

I want this to change. Children and young people, regardless of disability, have specific rights. These rights include being involved in decisions that affect them as well as having their views heard and taken seriously.

Many people that work in the disability sector already have skills and strategies for involving disabled children and young people in decision-making. But there is always room for improvement. One of the biggest barriers for practitioners is a lack of guidance and support when it comes to working effectively with children and young people with disabilities.

There are some key ideas that we need to understand to ensure that we are working well with children and young people. The resource I developed takes a look at four of these:

  • The rights of disabled children and young people to be heard.
  • The basics of shared decision making
  • Barriers to shared decision making
  • Strategies and tools for working with disabled children and young people.

I hope that this resource provides guidance and some insights into creative and flexible ways of working with disabled children and young people that we support are involved in decisions regarding their care and decisions that affect them.

I would love to hear your thoughts on this resource, is it helpful? Do you utilise other strategies and tools when working with disabled children and young people? Do you have thoughts on this resource as a disabled person and/or whānau member? If you have any comments, or thoughts, please contact me:


To read this report open the document here in resources.


Ethnic inequality in access to disability-related support

We did this research with A Better Start National Science Challenge. We compared the ethnicity of disabled children and young people accessing the Ministry of Health’s Disability Support Services with the Ministry of Education’s Ongoing Resourcing Scheme.

There were big differences. Children and young people accessing the Ministry of Health’s disability services were more likely to be New Zealand European. They were less likely to be Māori, Pasifika, Asian, and Middle Eastern/Latin American/African.

The greatest difference was for Pasifika; Pasifika children were 25% less likely to access the Ministry of Health’s disability services.

There should not be big differences like this.

Click this link to read the report: Ethnic-inequality-in-access-to-disability-related-support.pdf



State of wellbeing and equality for disabled people, their families, and whānau report

CCS Disability Action published the State of wellbeing and equality for disabled people, their families, and whānau report in December 2019. The report uses Statistics New Zealand and Ministry of Education data, not previously released, to provide a detailed picture of the lives of disabled people and their families in New Zealand.

The report reveals a gloomy picture, showing unacceptably high levels of inequality, in virtually all key measures of wellbeing. It also uncovers evidence that this situation is worsening.

The findings: disabled children and their carers

Disabled children and their carers are significantly more likely to live in poverty in New Zealand. Households with disabled children are between 1.4 and 1.6 times more likely to be below all three poverty thresholds than households that only had non-disabled children.

Specifically, the report shows:

  • Households with disabled children were 1.5 times more likely to earn under $40,000 a year, compared to households that only had non-disabled children.
  • 63% of carers of disabled children say they do not have enough money or only just enough money.
  • Poverty appears to be getting worse for disabled children and their families and whānau. In 2018, disabled students receiving the Ongoing Resourcing Scheme (ORS) were 1.5 times more likely to be at decile 4 and below schools, compared to all students. This is up from 1.4 in 2009.
  • The statistics on disabled students receiving ORS at special schools were even worse. They were 1.9 times more likely to be at decile 4 and below schools, compared to all students. This is up from 1.7 in 2009.

The findings: disabled adults under 65

Disabled adults in New Zealand face concerning levels of discrimination and material hardship, significantly effecting their reported wellbeing. Compared to non-disabled people in the same age range the report shows that disabled people under 65 are:

  • 2.5 times more likely to experience material hardship.
  • 1.6 times more likely to say their housing was very unaffordable.
  • 2 times as likely to report being discriminated against.
  • 2.2 times more likely to rate their life satisfaction as a 6 or below (on a scale where 10 is the highest).
  • 1.9 times more likely to rate the wellbeing of their family as a 6 or below (on a scale where 10 is the highest).
  • Almost twice as likely to report being discriminated against.

Latest survey shows many Kiwis still not getting a fair go ten years on!

Research completed in December of 2016 by CCS Disability Action indicates that levels of parking abuse have not improved in ten years, with abuse rates still unacceptably high. It appears that while most New Zealanders follow the road code, a very large percentage of our population does not follow a moral code when it comes to the rights of disabled people.

In the latest research, that you can read here, by clicking on the documents titled, CCS Observational and Omnibus Report, it is noted that mobility parking abuse indicates that about one in two people actively choosing to park in car parks designated specifically for the use of disabled people who have a Mobility Parking permit, are not authorised to do so thereby denying disabled people access to their own communities. And that’s no small amount of Kiwis. According to the 2013 Disability Survey – over one million New Zealanders have a disability. Isn’t it time all Kiwis got a fair go?

Getting the Life I Want

New vocational research changes service delivery thinking.

In 2016, CCS Disability Action commissioned a research project with The Donald Beasley Institute entitled “Getting the Life I Want”. The intent of this research was to ensure our organisation was clearly hearing the voices of the disabled people we work alongside in a time of immense change within our sector to ensure that we are offering the best possible service and outcomes related to employment. This research allowed people to tell us exactly what is working for them and whether we are delivering services that effectively meet the real needs of people and communities. You can read the results of our findings in the Key Informant Interviews, Literature Review and Online Survey documents in our Resouces section.

I am here - Article 19

We are really concerned about the barriers faced by people with high and complex needs. So we commissioned researchers from the Donald Beasley Institute to work alongside twelve people with high and complex support needs to tell their stories and be heard. The result is the powerful Article 19 - I am Here research.

The twelve people involved told us that they were denied the fundamental freedom to choose where they live and who they live with and to be included in the community. This must change!

We want to use this research to change the way the government and wider society treats people with high and complex needs. People with high and complex needs must be included in society, the same as everyone else.

Measuring Accessible Journeys

We worked with a professional traffic safety researcher, funded by the Ministry of Social Development "Making a Difference" fund, to develop and try a way of counting the number of people using visible mobility aids in various public places. Crucially, the results were accepted by transport planners and engineers who use benefit/cost analysis rules when allocating funds for access improvements. Follow the link to the Traffic Design Group report on the pilot project and watch this space for details of the next stage.

In the next stage, we hope to gather significantly more data and extend the project to several more centres. We will be investigating smarter ways to gather the data using video recognition technology. Our dream is that on-going monitoring will clearly demonstrate the value of more accessible transport networks, including footpaths, and allow local and central government to give access improvements the attention they deserve.

Street Accessibility Audit for Waipa District Council

This is a very exciting piece of research that was requested by the Waipa District Council. The research is an assessment of the mobility spaces and access routes for the central areas of Cambridge, Kihikihi, Leamington, Pirongia and Te Awamutu.

To view more or request specific research articles please Contact Us 

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