IN-CONFIDENCE
Appendix 2 -Working Group Minutes –
excerpts pertaining to EGL
Excerpts from Justice Working Group Meeting Minutes
Meeting 2
Date: 24 April 2025, 11am-12pm
Agenda Item: Outcome development and actions
Key discussion points
Justice chapter
14. In thinking about the elements of the access to justice chapter in the NZDS, human
rights should be a focus in the overarching goal. Broad issues include the need for a
disability rights act (existing legislation causes personal injustices in people’s lives).
There is need for social investment alongside a human and disability rights approach that
is more whānau focussed (based on international literature) and focussed on the EGL
principles. In terms of outcomes, we need to highlight:
• parity across data (recognising data limitations)
• the role of the CRPD and the processes around its mechanisms
• understanding of ableism across government and community, and recognition of
historic ableism in legislation.
Meeting 7
Date: 30 May 2025, 12-3pm
Agenda Item: Reduce list of actions
Key discussion points
Civil justice
22. The group discussed a review of the adoption act to protect the rights of disabled
people to be parents and foster parents. The issue is broader than simply a review of the
act, disabled parents need to be resourced and supported to raise their children
(facilitation of this sits with DSS so that Oranga Tamariki staff don’t force disabled
parents to put their children into care and protection).
23. The lever is around the assumption that disabled parents are incompetent. It is a
safeguarding issue due to discrimination against disabled parents by social workers.
24. There is also a larger issue to do with abuse of adoption and fraud (group members
are still waiting for an apology from being forcibly adopted). It was suggested that if
adoption issues can’t be addressed through this work, then there should be a statement
to review the act or something in the preamble of the rights of disabled parents (for
example, empowerment of whānau based on the Enabling Good Lives principles).
IN-CONFIDENCE
Excerpts from Housing Working Group Meeting Minutes
Meeting 3
Date: 13 May 2025, 1-3:20pm
Agenda Item 1: Emerging themes – NZDS Vision, Principles and Approaches
Summary of discussion
1 Whaikaha has been holding workshops with key groups within the disability and
tāngata whaikaha Māori community to develop the vision and principles of the Disability
Strategy. Ben summarised some of the key themes that have arisen in the workshops so
far.
2 The current set of principles is based on Te Tiriti, the UNCRPD, and disabled people
being actively involved in decisions that affect them. There are ongoing discussions on
whether the current vision of New Zealand as a ‘non-disabling society’ is still relevant or
whether a more positively framed vision is needed.
3 There have been discussions on whether additional principles are needed in the
Strategy – particularly those drawn from the Enabling Good Lives principles. The groups
have also been considering whether the ‘twin-track’ approach in the current Strategy
should continue.
4 The group discussed how the discussions around the vision and principles relate to the
ideas that the housing working group is developing. There appears to be particular
overlap with the group’s focus on accessibility, removing barriers through universal
design, accountability across government agencies, and self-determination and agency.
Excerpts from Health Working Group Meeting Minutes
Meeting 3
Date: 8 May 2025, 12-2pm
Agenda Item 3. Outcome description
Equitable Access
• Bio ethics and bodily integrity point: Changes requested included breaking
it up into smaller sections, removing the use of ‘right’ and ‘treat with
sensitivity’, as too subjective. Intersection with justice that needs to be
considered. Agreement relocate and consider it as part of ‘supported
decision making’.
• Ideally health system reflects what disabled people need as part of its business as
usual. Part of designing and delivering our health system is accessibility, inclusivity and
reflecting that disabled people are part of our country and community, and also are able
to adapt when needed.
• Important to include the design and delivery.
IN-CONFIDENCE
• UNCRPD wording covers these quite well – bodily integrity, non-discrimination under
the law, accessibility etc
• Equitable access: design and delivery framing is helpful – probably intersects with
things like costs. Are services easy to access? Are they affordable? Is transport
available? There are many factors that feed into accessibility.
• May want to signpost to the foundational documents: Much of this language is well set
out in these documents and could be used in the outcome statement: ‘health system
uses Te Tiriti, Enabling Good Lives and UNCRPD to deliver services.
• Bullet point one: Disabled people should be able to navigate – needs to be stronger,
needs to be comparable or better than for non-disabled people.
System and Service
• One option for this would be to read:
Health service designed to meet disabled people’s needs as BAU.
• Disability models of care should be embedded in what we do first, and then that
includes ability to be flexible and adapt. If a system starts with ‘flexible and adapting’, it
feels like doing things for disabled people is different and on top of what we do as BAU,
rather than part of.
• Enabling Good Lives in health uses a ‘twin-track approach’, the idea that you make
your core services as accessible as possible, but some people will stil need adaptions.
• ‘Development and education of the healthcare workforce’ overlaps with the education
group as this is where curriculum planning sits, but there is a need for a culture change
in the health system as well.
• ‘Employing more disabled people’: Not just about ensuring employment is accessible,
but need a culture shift within the health system as many people who are disabled do
not feel comfortable telling their employer that they are disabled.
• What are the levers? What are the solutions that are going to work to shift the dial,
and make the change in this area?
• Aumea advised that she has a meeting of chairs tomorrow, can look for opportunities
to intersect with other groups.
Discussion on Action 3 - habilitation and rehabilitation.
• Concerns raised that the resourcing implications of this action would be considerable
and make it unlikely given current financial constraints in the sector.
• In refining the actions - is this going to make our top five list? o Not worried about
wording but concerned this process does not al ow anything bold. It seems this is setting
us up to tweak and approve what is already there. Seems a big problem as this is a
national strategy.
• Discussion on small number of Enabling Good Lives (EGL) connector sites and that
expanding them has been talked about for a decade. We need to make things more
equitable.
• If we don’t include Action 3, we’re not identifying Article 26 or calling out habilitation
and rehabilitation in other places.
IN-CONFIDENCE
• This is not specificially in the current Health of Disabled People Strategy but it is very
high level so it could be argued it could fit in somewhere.
• There’s a glaring gap between what we’re able to pull out and what we’re able to
propose. There are places where people fall through cracks because disability support
services, the health system and other types of services have gaps. We haven’t seen the
appetite as it’s not the job or mandate of existing systems. Action 3 highlights a larger
gap we’re stepping around – aspects of which are not clearly the health system and not
clearly another area.
• Could this be a subset of Action 2? Reviewing and implementing and this is part of the
feasibility. o Think feasibility will need to be in no matter what.
o Make sure that services such as EGL are available everywhere e.g. The same person in
Hamilton EGL gets broader funding/services than in Auckland.
• Not opposed to national consistency but that tends to mean that everyone is pushed to
the lowest common denominator rather than lifted to best practice. That we’ve talked
about this for so long makes it feel like we need to include it.
• In terms of scope EGL is under DSS portfolio and not in scope for this mahi.
• Agree the risk is the minimum rather than the maximum approach is taken.
Meeting 4
Date: 15 May 2025 11am-3pm
Agenda Item 2. Discussion about Actions
Disability model of care
• Disability model of care work being progressed by Health NZ is relevant to many of the
actions proposed.
• In particular it is important that people understand that it’s not about designing a
whole new system – it’s about universal design and getting people to think about
disabled people as a population group. Also need
to recognise that disabled people are all different with different needs. Need to ensure
that disability models of care need to be flexible. • This could be included in the case for
change, may also be picked up with the vision and principles section which will highlight
foundational documents of Te Tiriti, UNCRPD, and EGL.
• There is currently no codified disability model of care that can be implemented. Ideally,
all models of care would be inclusive so there is a need to be clear about what disability
model of care would require healthcare settings to do differently.
• Models of care is a health term, may find it doesn’t ‘fit’ in this chapter but we do want
to enforce systemic changes be they through regulation, professional bodies, Health NZ’s
work and so forth.
IN-CONFIDENCE
Meeting 8
Date: 10 June 2025, 11:30am-1pm
Summary of feedback from communities
People noted the initial EGL Approach intent – it began as a grassroots framework.
Person-directed, self-determination and seamless were identified. Key elements were
matched with the current draft
o Leadership by disabled people throughout health
o Independent support to navigate the system
o Reasonable accommodations
o Concept of only having to say things once
o Disabled people and whānau educate the workforce in a values-based way.
• Language – A caution that different people mean different things when they use the
same language. Whānau Ora was one example, but the similar thing has happened to
Enabling Good Lives (EGL). Both mean different things to different people now.
o Precision of language is important – don’t know how or if we can reconcile that
in the time we have.
o Pushback on process of consultation and development. Some confusion as to
why key ideas of the last Strategy are some of the first things to be eliminated in
this process.
o Whaikaha is supportive of the plain language approach. Working group needs to
ensure that they are as clear as possible about the concepts, interpretations and
language used so that the main author can incorporate these into the strategy.
o Anticipate that external experts will produce plain language version of the
Strategy, alongside other alternative formats.
o Plain language is good but multiple interpretations will still exist.
Document Outline
