Disability data and evidence collection framework

Oranga Tamariki is working to improve disability data and evidence. This literature review responds to the Oranga Tamariki goal of improving disability data collection and use.

The literature review was commissioned by Oranga Tamariki and conducted by the Donald Beasley Institute using an integrative literature review methodology. It explores 3 key questions regarding existing models and frameworks of data collection, the application of models and frameworks within the context of Aotearoa New Zealand, and the development of a data collection framework for Oranga Tamariki.

The literature review summarises informative and relevant treaties, conventions, strategies, policies, and documents. It applies frameworks to the context of Aotearoa New Zealand and discusses the ‘why, what, when, who and how’ of disability data collection. The literature review then draws these findings together to provide a suggested disability data and evidence framework.

Findings from this literature review are intended to inform future discussion and guidance in relation to Oranga Tamariki disability data improvement.

Disability data and evidence is crucial in upholding the human rights of tamariki and rangatahi. It can be translated into meaningful insights that inform and transform policy and practice. And it helps to honour Te Tiriti o Waitangi, monitor human rights progress, prevent abuse, and advance current models of thinking about disability.

The literature review findings identify 4 key values consistently highlighted in the literature: disability data collection is person-centred, strength-based, guided by kaupapa Māori principles, and disability data is transformative. A disability data framework conceptualised on this basis places tāngata whaikaha at the centre, surrounded by intersections of Te Titiri o Waitangi, the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and the New Zealand Disability Strategy (NZDS).

The literature review also demonstrates the importance of carefully considering the ethics of knowledge production when collecting disability data and evidence. It reaffirms that when we listen to tamariki whaikaha and their whānau, meaningful knowledge is gained. This information will frame and inform subsequent disability work.

Elaborating the ‘why, what, when, who and how’ provides an evidence-informed understanding of disability data collection and use. The literature review provides the basis for discussion and guidance within Oranga Tamariki about disability data improvement.