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2022 December DDEWG Meeting Summary

These are the minutes of the Disability Data and Evidence Working Group meeting at 10am-12pm, held online via Teams. 

Attendees

Government agencies:

  • Office for Disability Issues: Brian Coffey ( Co -Chair), Michelle Gezentsvey, Sarah Fuhrer, Catherine Brennan, Matt Frost
  • Stats NZ: Robbie Blakelock ( Co-Chair), Katy Auberson, Phillipa O’Brien, Sophie Flynn
  • Ministry of Social Development: Sonja Eriksen
  • Social Wellbeing Agency: Andrew Webber
  • Oranga Tamariki: Dr James McIlraith
  • Ministry of Health: Shari Mason, Bridget Murphy, Daniel McAuliffe
  • ACC: Ben Lucas, Tina Cronshaw
  • NZ Police: Christine Aitchison
  • Ministry of Education: David Jagger
  • Waitemata DHB: Wesley Pigg
  • Whaikaha – Ministry of Disabled People: Dr Adam Dalgleish
  • New Zealand Transport Agency: Samantha Eastman
  • Cancer Control Agency: Giselle Bareta, Michelle Liu

Independent agencies:

  • Human Rights Commission: Frances Anderson
  • Office of the Ombudsman: Andrew McCaw
  • NZDSN: Peter Reynolds

Disabled People’s Organisations Coalition:

  • Tristram Ingham 

Universities:

  • Associate Professor Brigit Mirfin-Veitch

Apologies:

  • Craig Wright, Social Wellbeing Agency
  • Laura Cleary, Te Whatu Ora
  • Richard Hamblin, Health Quality and Safety Commission
  • Elodie Green, Oranga Tamariki
  • Annie Chenery, Ministry of Education
  • Tadhg Daly, Ministry of Justice
  • Alex Dixon, Whaikaha – Ministry of Disabled People.
  • Olivia Kitson, Ministry of Transport
  • Kelly Palmer, Ministry of Health
  • Juvena Jalal, Education Review Office

1. Administration

  • Accepted minutes of October 2022 meeting as read and confirmed group acceptance of making these available online.
  • Noted – to include the link to the latest paper from the Social Wellbeing Agency.

2. Stats NZ – Household Disability Survey: Katy Auberson; Phillipa O’Brien

Stats NZ presented the screening questions for the 2023 Household Disability Survey (HDS).

  • Discussion around age groups proposed in the survey. If this survey was to be used as a comparable for other agencies, this could be difficult, given how the ages are defined.
  • Question about the fatigue question and the restrictive nature of the 1-day component.
  • Comments around the functional criteria questions relating to mobility. These questions are likely to be grouped up and will sit under mobility.
  • Discussion around the number of steps a person can walk in the question on mobility.
    • Discussion around the terms: “condition” vs “environment” and “diagnosis” vs “disability” – Stats’ approach to defining “disability” in the 2023 HDS is grounded in   the World Health Organisation’s International Classification of Functioning and Disability (ICF). The ICF conceptualises a person's level of functioning as a dynamic interaction between their health conditions, environmental factors, and personal factors. In other words, it is a biopsychosocial model of disability, based on an integration of the social and medical models of disability.
    • It was noted that Stats’ approach to defining “disability” cannot consider the cultural understanding of disability. Given that the ICF is a framework and classification system for the measurement of human functioning, it is not designed to be used as a tool for identifying disabled people as a separate social/cultural group (e.g., tāngata whaikaha Māori).
    • Debate about the inclusion of Fetal Alcohol Syndrome, which is not yet defined as a “disability” for access to disability services, but for the purpose of the UNCRPD, it is included under cognitive/intellectual disability
    • Identity (e.g., cultural) question may not be useful and may generate false positives because of the way respondents answered previous questions.
    • Note language of functional domains vs impairments when publishing results, e.g., “X% of people screened in via the mobility domain”, with accompanying description of what is the mobility domain.
    • Tāngata whaikaha Māori term is not going to be used because this would require explanation of the term which is not widely understood
    • Comparability over time was questioned as there are more questions now which can lead to a different prevalence rate. The 2023 Disability Survey will be stand-alone because of the changes, especially the disabled threshold (the new distinction between “some difficulty” vs “a lot of difficulty”), which can lead to a lower prevalence rate.
    • Remark about why intellectual disability was linked to an official diagnosis in the question [Katy to check].
    • Discussion on what is the definition of disability being screened. Stats replied functional only (not socio-cultural),but adding learning disability questions. WGSS not intended as screening questions.

Actions:

  • Continue discussion about measurement of disability in the Disability Survey offline

3. Te Aho o te Kahu Cancer Control Agency: Guest speaker - Giselle Bareta, Project Manager, Michelle Liu, Data Lead

Presenting a new project on the experiences and outcomes of disabled people with cancer in Aotearoa New Zealand, and how this compares to disabled people with cancer worldwide. Aims of the project include:

  • establishing a relationship between the Agency and the key stakeholders across the Disability Sector
  • consolidating what the data can tell us about the experience of disabled people who have cancer in Aotearoa New Zealand
  • identifying gaps in the evidence base
  • supporting the Agency to understand disability sector priorities for improved cancer care and health outcomes
  • and commissioning a piece of work or research that improves the evidence base for the experience of disabled people with cancer in Aotearoa New Zealand.

Data sources to explore include:

  • Whaikaha Disability Support Services (DSS) data linked to cancer registration data. This method includes DSS clients with a cancer diagnosis from January 2010 onwards, where the DSS start date was on or before the cancer diagnosis.
  • 2013 Disability Survey data linked to cancer registration data. This method includes Disability Survey respondents with a cancer diagnosis, where the Disability Survey interview date was on or before the cancer diagnosis. This only includes people who were identified as disabled.
  • Social Wellbeing Agency functional disability indicators linked to cancer registration data. Data is based on multiple sources, including the 2018 Census, DSS, and interRAI which indicates some level of functional limitation.

DDEWG response:

  • Tristram acknowledged the comprehensive approach and offered to help the Agency connect with tāngata whaikaha Māori and Pacific disabled people.
  • Question on whether other data sources were considered, e.g., ACC population. Serious injury indicator can be a proxy for disability.

Actions:

4. Responding to the UN Concluding Observations - Matt Frost, Principal Advisor, ODI

UN Committee Observation of relevance to DDEWG:

The Committee recommends that the State party in conjunction with Statistics New Zealand, develop a national disability data framework to ensure appropriate, nationally consistent measures for the collection and public reporting of disaggregated data on the full range of obligations contained in the Convention, especially with regard to Māori, Pasifika, LGBTIQA+, children and women and girls with disabilities.

  • ODI is coordinating the Government’s cross-agency response through a Cabinet paper due in March 2023 and an implementation plan due in June 2023. Stats NZ is designated as the lead agency with Whaikaha as the supporting agency.
  • The Government may accept recommendations without modifications, accept with modifications, or reject with a comprehensive rationale.
  • There is an 8-year timeframe for implementation, but we need to be progressing these recommendations now. DDEWG would be a good vehicle for this implementation.
  • Improvements in New Zealand’s data collection on disability were acknowledged in Geneva. DDEWG has a collection of enduring disability measurement questions, and a stock take on different outcome’s indicators. The plan is to build on what we have and align data to what agencies want to achieve.
  • ODI shared some initial thinking on what the disability data framework could look like - envisioning a pathway for disability data to be collected systematically in real-time, with individual government agencies taking responsibility for knowing who they serve, what are the context-specific needs of disabled people, and how their services are working for disabled people. Population-level information will also be crucial for policy development and planning.
  • As recommendations are implemented, the process we undertake to do this will be important along with continued conversations.

5. Terms of Reference;Robbie Blakelock

The environment in which DDEWG operates has changed with the following:

  • new Data and Statistics Act 2022
  • the role of the Government Chief Data Steward
  • ODI now being a part of a newly formed Whaikaha with a mandate for disability stewardship
  • Recent UNCRPD recommendations to develop a disability data framework.

Confirmed that DDEWG agrees to review the Terms of Reference, with input from the DPO Coalition, the Human Rights Commission, and other interested parties.

Actions: