What Is Going to Happen to Family Network

Parents/Whānau/Family unit Network Coming together - April xix

Coming together participants, including some who joined usa 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, then on nineteen April 2021 nosotros 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 past Brian Coffey, Director of ODI and Rebekah Graham, the Executive Manager of Parents of Vision Impaired (NZ). Rebekah began the coming together 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 problems as parents in trying to navigate these systems to go 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 Inability Action Plan.

"Ane of its main objectives is to turn disability from what is all too often a special project into business as usual for authorities agencies. Every government agency is supposed to be having a work programme that shows how they're going from at present 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 exist part of the solution."

The health and disability review and organization transformation

The first presenter was Geraldine Forest from the Health and Disability Review Transition Unit of measurement at the Ministry of Health. She said that the useful thing well-nigh reforms is they provide a not bad opportunity for change. Now that Government minister Little has announced the regime'south response to concluding year'due south Health and Disability Review written 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 Claw from the Ministry of Health spoke on Enabling Good Lives (EGL) and organisation transformation progress.

"We've been doing a lot of work with the EGL team to make certain that 'working in partnership' isn't just words on newspaper. 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'due south of import to begin early on with the principles, embed them in families, and then that they know how to fight early on, get-go younger so they don't go into a segregated model for the children" (IE: they keep their children within mainstream pedagogy).

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

An update on the Disability Action Plan

Karen Soanes from the ODI gave an update on the Disability Activity Program (DAP) reporting.

 "We've had two lots of meetings to go through all 29 reports and get through them and ask questions. Over the past 12 months there has been a lot of progress. COVID delayed quite a few projects only the next six-monthly reporting showed that everyone had defenseless upward. 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 coming together in Feb at that place were a lot people recognising the difficulties that they face up beingness issues that others confront."

Reporting volition be online every bit shortly as possible – the ODI has prioritised providing information technology in attainable formats for everyone earlier it goes upward.

Improving disability data

After a brusque pause, Shama Kukkady from ODI spoke on improving disability information.

 "The purpose is to measure how well we're doing when it comes to the Disability Strategy. The procedure began in 2017, with the viii outcomes in the Strategy.  Nosotros've done a stocktake and come up with 300+ metrics. What we're at present in the process of is cutting those downward 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 upwardly on the ODI website."

Shama likewise shared some figures showing inequities by disability status.

One thing that's important to understand is the definition of inability. What nosotros utilise in surveys and the demography is the Washington questions because they have international comparing, and they accept been shown to exist as reliable as any other style to disaggregate disability data. It'south not magical only it is a sampling methodology. Discover out more than near 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 near two-thirds of not-disabled children. A smaller disability gap in dwelling house ownership rates was seen for people aged xv to 29 years. This historic period group was the least likely to alive in an owner-occupied domicile.
• Disabled children (aged 5 to 14 years) living in rented homes were the most probable to feel damp and mould in their homes.
• About half (48.five percentage) of disabled children (aged v to 14 years) lived in households with a total income of $70,000 or less, compared with nether a 3rd (30.two percent) of non-disabled children.
• Some measures include disabled learners existence more likely to have no qualification, and less likely to consummate courses.
• Children known to Oranga Tamariki were too more than likely to have at to the lowest degree one indicator of inability than children with no previous involvement with Oranga Tamariki. Of the 4,600 tamariki in out-of-abode 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-government minister-sepuloni/) carried out during and afterward COVID-xix lockdown also had some interesting findings –disabled youth raising educational impacts equally a potential adventure, with many highlighting the need for additional learning back up during lockdown, and fears over falling behind in instruction.

Pamela Cohen from the Ministry building of Education also spoke nigh steps being taken to amend inability information 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 endemic by each school, kura, early on learning service, and kōhanga reo.

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

Using the sLSR volition mean schools:

• don't accept to create their own annals from scratch
• use a common linguistic communication to describe learning support needs
• minimise security and privacy risks.

A major benefit of the mutual linguistic communication is that education providers won't have to develop their ain language as a cluster. It volition also hateful that in future data will be able to travel with learners, and the next school or kura volition 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. Information technology'due south NOT about diagnosis, information technology's virtually a consistent way to talk nigh learning support needs, which are not dependent on diagnosis. So at that place's a taxonomy of needs that's been built into the standardised annals. The intention with this is a style to track learners' progress over fourth dimension and improve the quality of information across the didactics system at a school, cluster, regional and national level.

This will assist with planning in clusters of schools. The Ministry has plans to coil information technology out to schools over the next year. It volition add together a not bad deal to our understanding of organization-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 unit-led organisations does not replace the part 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 coming together and that there will be piddling chapters for the meetings to commission programmes of work from the meetings.
• essentially the meetings volition be an information sharing meeting with either officials or the network identifying the calendar and topics for give-and-take.
• ODI has left it open to the parent/whānau/family unit 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 beyond government and then they tin can be aware of some of the key things that are happening inside government. ODI'south connection is via the Convention on the Rights of Persons with Disabilities and the Disability Strategy. Working with the Families & Whānau groups volition be done alongside our other piece of work and relationships, not replace it. Nosotros don't know every group working in this space, but we invite them to bring together us. Delight e-mail odi@msd.govt.nz if your group would like to be part of the adjacent meeting.

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Source: https://www.odi.govt.nz/whats-happening/parentswhanaufamily-network-meeting-april-19/

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