Summary: DDEWG meeting June 2021
The Disability Data and Evidence Working Group met on 8 June, 2021. This is a summary of that meeting.
- Stats NZ: Dr Claire Bretherton (Chair), Sophie Flynn, Katy Auberson and Chelsea Dickson
- Office for Disability Issues: Brian Coffey (Chair), Shama Kukkady and Dr Catherine Brennan
- Ministry of Social Development: Anne Hawker
- Ministry of Health: Shari Mason and Dr Adam Dalgleish
- ACC: Tina Cronshaw
- New Zealand Transport Agency: Samantha Eastman
- Ministry of Transport: Seb Brown
- Health Quality and Safety Commission: Richard Hamblin
- Human Rights Commission: Frances Anderson and Kerri Kruse
Disabled People’s Organisations Coalition
- Dr Jonathan Godfrey and Dr Tristram Ingham
New Zealand Disability Support Network
- Monica Munro
- Associate Professor Brigit Mirfin-Veitch
- Oranga Tamariki: Dr James McIlraith, Dr Ann Walker and Elodie Green
- Ministry of Health: Bridget Murphy
- Ministry of Justice: Tadhg Daly
- Ministry of Education: Matt Frost
2. Approve March 2021 meeting summary & papers for uploading to Office for Disability Issues website
3. Patient Profile and National Health Index Project (Ministry of Health)
Paper 1 Patient Profile and National Health Index Project
- The Ministry of Health has approved the scoping stage of a project that will:
- Allow the National Health Index (NHI) to be disaggregated by disability status.
- Create an accessibility “patient profile” system (also known as a digital health passport). This system will allow disabled people to record their needs & accommodations, and make this information available to health workers (making health appointments more accessible).
- People interacting with the health system will be asked questions to determine their disability status (which will be associated with their NHI), and their required reasonable accommodations. This information will then be saved to their Patient Profile.
- A new dataset will be created rather than compiling the data that DHBs already hold. Comments were made in support of new data being collected because it would result in consistent data. Current data held by DHBs are also incomplete and not representative of what supports disabled people need.
- Information on the Patient Profile can be shared between silos (ie GP, hospital).
- The Patient Profile system puts the onus on the health system to keep track of a person’s needs/accommodations, rather than the person having to repeat them at every interaction.
- A comment was raised that disabled people should be able to update their patient profile, because needs and accommodations change over time. A person will have different needs when they are ill compared with when they are well.
- It was also raised that disabled people are more likely to be digitally excluded, so is there an alternative for those who are digitally excluded?
- Another comment was made that Paper 1 sometimes uses “accommodations” and “accessibility” interchangeably.
- Question was asked: Which definition of “disability” should be included? It was suggested that the UN Convention on the Rights of Persons with Disabilities definition would likely be used. Comment was made that the definition of disability used/the reason that the questions are being asked should be socialised in the disabled community and other agencies.
- Project is in the scoping phase. There will be a project board and steering group that will decide the strategic direction of the project. Progress reports will be provided to DDEWG.
- The disabled community will be consulted and involved as the project progresses. It was observed that care should be exercised when engaging with disabled people in the health system due to negative past experiences. There is distrust of the health system within the disabled community. This project is an opportunity to improve disabled people’s relationship with the health system.
- There was consensus among DDEWG members that the project is a good idea and is timely.
4. Proposed content of the 2023 New Zealand Disability Survey (Stats NZ)
Paper 2 Proposed content of the 2023 New Zealand Disability Survey
- Paper 2 is a draft document of the proposed content for the 2023 Disability Survey. This paper will be published on the Stats NZ website later this year when the formal consultation opens. At this stage, Stats NZ were seeking feedback on the paper itself (including the consultation questions), not the survey content.
- Comments included:
- The Disability Survey (Stats NZ) collects data that may be better placed collected by other government agencies. For example, the Ministry of Health could report on health outcomes. If other agencies become responsible for reporting data on their relevant areas, this will free up room in the survey for content that cannot be reported on by other agencies. This would require a strategic approach and timely commitment from relevant agencies.
- Other data collection efforts are likely to use a short set of questions (eg, Washington Group Short Set [WGSS]) to identify disabled people, which can make it difficult to disaggregate further, given that WGSS only picks up a small sample of disabled people. The Disability Survey uses a much longer question set that covers more types of impairments and will identify a larger number of people as disabled. Given that more disaggregation is possible, there is some worth in recollecting data for this more inclusive, larger disabled population. There is also value in collecting data on a range of topics in the Disability Survey so the interactions between them can be analysed and compared to other wellbeing outcomes.
- The word “special” should not be used when referring to equipment; it is just “equipment”, not “special equipment”.
- Given that Stats NZ will need to make many decisions regarding the Disability Survey in a timely fashion, it was proposed that a smaller working group could be put together using DDEWG members that meets more frequently. Sole purpose of this smaller group would be to discuss the 2023 Disability Survey.
Stats NZ will follow up with DDEWG members to seek volunteers to establish a smaller working group focused on the 2023 Disability Survey.
5. Access to disability data (Government and Integrated Data Infrastructure) (Shama Kukkady)
- Update on the Access to Disability Data and IDI workstream: the group have decided to create modules for IDI users which will each focus on a particular disability data related topic (ie, disabled children, mental health, Autism Spectrum Disorder, etc). Workstream invited further suggestions for topics to cover, LGBTQIA+ disability data was suggested.
- Modules will outline recommendations and/or best practice for using disability data. Workstream are also available to talk with people/agencies who are seeking feedback on their projects.
- Update on the New Zealand Disability Strategy Outcomes Framework for Enduring Questions: ODI have received feedback from various agencies on the reliability of current measures. A piece of work has been completed to show how much progress has been made for each measure since 2016. Framework has now been sent to DPOs for review and there will be a workshop in June 2021 to pull everything together and come up with a final set of indicators.
- Recruitment for the Resources workstream role has been unsuccessful.
6. Update on development of disability administrative questions (Brian Coffey and Jonathan Godfrey)
Paper 3 Update on development of disability administrative questions
- A workshop with DPOs and government agencies was held at the end of May 2021 to discuss the administrative question.
- Messages that came from workshop were:
- Ordering of questions is important. A question/questions about accommodations should come first, followed by the question to ascertain whether the person identifies as a disabled person.
- Children or dependents were not covered very well, and Māori perspective needs more work too.
- Questions that work well for in-person interactions may not be suitable in a survey or on a form.
- An additional question may be needed to determine if people require support to fill out survey forms. This is especially relevant for people with mental health conditions.
- Collecting information on a person’s support needs trumps the need to collect good quality disability data for statistical purposes. The importance of this data collection needs to be socialised within the disabled community.
- The importance of privacy involved in collecting and storing data on a person’s support needs was raised. Who should have access to what data, under what circumstances?
Next meeting will be on 7 September 2021 (9.30am-12.30pm).
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