Parents/Whānau/Family Network Meeting - April 19

Meeting participants, including some who joined us on Zoom

Introducing the group

The Office for Disability Issues (ODI) received a request to engage with organisations that represent parents/whānau/family of disabled children, so on 19 April 2021 we held the first of these meetings. The purpose of the forum was to provide updates on key disability work programmes and provide an opportunity for parent/whānau/family-led organisations to discuss key issues.

The meeting was co-chaired by Brian Coffey, Director of ODI and Rebekah Graham, the Executive Director of Parents of Vision Impaired (NZ). Rebekah began the meeting explaining the purpose of the group.

“I realised there were quite a number of parent-led, whānau-led groups that were national but fairly small, so there were lots of us working in this space, facing similar issues as parents in trying to navigate these systems to get the services our children have a right to have. So I wanted to bring these groups together to find out what the commonalities are and maybe get some traction rather than us individually bringing issues in and not getting traction.”

Dr Jonathan Godfrey from the Disabled Peoples Organisation Coalition reminded everyone of the purpose of the Disability Action Plan.

"One of its main objectives is to turn disability from what is all too often a special project into business as usual for government agencies. Every government agency is supposed to be having a work programme that shows how they're going from now to improving lives of disabled people. Getting the voices of disabled people and their parents/whānau into the mindset of officials is so important because government people don't know what they don't know, and they do need to be told. And once they are told, they do want to be part of the solution."  

The health and disability review and system transformation

The first presenter was Geraldine Woods from the Health and Disability Review Transition Unit at the Ministry of Health. She said that the useful thing about reforms is they provide a great opportunity for change. Now that Minister Little has announced the government’s response to last year’s Health and Disability Review report Geraldine Woods will be progressing work on disabled peoples equity of access to the health system and equity of health outcomes.

After Geraldine, Julie Hook from the Ministry of Health spoke on Enabling Good Lives (EGL) and system transformation progress.

"We've been doing a lot of work with the EGL team to make sure that 'working in partnership' isn't just words on paper. It’s about how we ensure the voices of disabled people and families is leading work. We’re also interested in how we build capability within the families and whānau of disabled people."  

Zandra from the Down Syndrome Association added "It’s important to begin early with the principles, embed them in families, so that they know how to fight early on, start younger so they don't go into a segregated model for the children" (IE: they keep their children within mainstream education).

Lisa Martin from the Complex Care Group added "go early to give families and parents that space to think differently about the future of their loved ones!"

An update on the Disability Action Plan

Karen Soanes from the ODI gave an update on the Disability Action Plan (DAP) reporting.

 "We've had two lots of meetings to go through all 29 reports and go through them and ask questions. Over the past 12 months there has been a lot of progress. COVID delayed quite a few projects but the next six-monthly reporting showed that everyone had caught up. 70% are on track, and no major issues have been identified. When we bring the agencies together there's a real sense of partnership. At the last meeting in February there were a lot people recognising the difficulties that they face being issues that others face."

Reporting will be online as soon as possible – the ODI has prioritised providing it in accessible formats for everyone before it goes up.

Improving disability data

After a short break, Shama Kukkady from ODI spoke on improving disability data.

 "The purpose is to measure how well we're doing when it comes to the Disability Strategy. The process began in 2017, with the eight outcomes in the Strategy.  We've done a stocktake and come up with 300+ metrics. What we're now in the process of is cutting those down to make sure they're useful and reliable measures. We're also applying a Te Ao Māori framework over it. The next process of that will be to put the data dashboard up on the ODI website."

Shama also shared some figures showing inequities by disability status.

One thing that’s important to understand is the definition of disability. What we use in surveys and the census is the Washington questions because they have international comparison, and they have been shown to be as reliable as any other way to disaggregate disability data. It's not magical but it is a sampling methodology. Find out more about the Washington questions on our website. 

• Less than half of disabled children lived in a home owned by a member of their household, compared with almost two-thirds of non-disabled children. A smaller disability gap in home ownership rates was seen for people aged 15 to 29 years. This age group was the least likely to live in an owner-occupied home.
• Disabled children (aged 5 to 14 years) living in rented homes were the most likely to experience damp and mould in their homes.
• Almost half (48.5 percent) of disabled children (aged 5 to 14 years) lived in households with a total income of $70,000 or less, compared with under a third (30.2 percent) of non-disabled children.
• Some measures include disabled learners being more likely to have no qualification, and less likely to complete courses.
• Children known to Oranga Tamariki were also more likely to have at least one indicator of disability than children with no previous involvement with Oranga Tamariki. Of the 4,600 tamariki in out-of-home care, 640 or 14% have a disability indicator.
• The ODI’s How’s It Going surveys (https://www.odi.govt.nz/whats-happening/message-from-minister-sepuloni/) carried out during and after COVID-19 lockdown also had some interesting findings –disabled youth raising educational impacts as a potential risk, with many highlighting the need for additional learning support during lockdown, and fears over falling behind in education.

Pamela Cohen from the Ministry of Education also spoke about steps being taken to improve disability data within schools through the development of a standardised learning support register on the Te Rito platform . 

A growing number of schools, kura, early learning services, kōhanga reo, and clusters are creating learning support registers to collect information about the learning support needs of their learners. At the school/provider level, learning support registers are managed and owned by each school, kura, early learning service, and kōhanga reo.

The sLSR will make it easier for schools, kura, early learning services, kōhanga reo and clusters to use a register

Using the sLSR will mean schools:

• don’t have to create their own register from scratch
• use a common language to describe learning support needs
• minimise security and privacy risks.

A major benefit of the common language is that education providers won’t have to develop their own language as a cluster. It will also mean that in future information will be able to travel with learners, and the next school or kura will have a consistent understanding of their needs.

"The standardised part of it is that we've worked with many different groups to develop a common language to describe learning-support needs. It's NOT about diagnosis, it's about a consistent way to talk about learning support needs, which are not dependent on diagnosis. So there's a taxonomy of needs that's been built into the standardised register. The intention with this is a way to track learners’ progress over time and improve the quality of data across the education system at a school, cluster, regional and national level.

This will help with planning in clusters of schools. The Ministry has plans to roll it out to schools over the next year. It will add a great deal to our understanding of system-level need."

So what next for the group?

It has been agreed that:

• at least two times a year ODI (with other officials as required and according to agenda topics) will meet by Zoom/face to face for updates on disability policy and to hear from the network.
• the relationship with the network of parent/whānau/family-led organisations does not replace the role of the Disabled Peoples Organisations (DPO) Coalition but sits alongside the role of the DPO Coalition.
• there is no funding to pay for people to attend the meeting and that there will be little capacity for the meetings to commission programmes of work from the meetings.
• essentially the meetings will be an information sharing meeting with either officials or the network identifying the agenda and topics for discussion.
• ODI has left it open to the parent/whānau/family network to initiate invites to other similar organisations.

As Brian said, what ODI is doing is working with this network of parent/whānau/family-led organisations is to make connections across government so they can be aware of some of the key things that are happening inside government. ODI’s connection is via the Convention on the Rights of Persons with Disabilities and the Disability Strategy. Working with the Families & Whānau groups will be done alongside our other work and relationships, not replace it. We don’t know every group working in this space, but we invite them to join us. Please email odi@msd.govt.nz if your group would like to be part of the next meeting.