On Thursday, April 26th 2018, Ministers announced the launch date of a new disability support system prototype in the MidCentral. Jade Farrar hosted a live show on Twitch.tv/jadefarrar covering the announcement and was joined by Michael Pulman.
The following collection of show notes chronicles the 3-hour show.
Welcome/Intro
The purpose of this video is to cover and react to the Ministerial announcement concerning the future of the disability support system. We also wanted to talk about the history of Enabling Good Lives and learn about the experience of a Waikato participant actively receiving supports in that demonstration, as well as talk about our key areas of focus from previous cabinet papers concerning the transformation.
History of Enabling Good Lives
Long term change to the disability sector was signalled in 2012 following a report sent to Government ministers in 2008 and an independent report from the disability sector in 2011 (https://www.parliament.nz/resource/en-nz/48DBSCH_SCR4194_1/cb220d2e3ba25dc33dec0b28b29b30578d110dd5)
Enabling Good Lives (EGL) was the official name for the new direction of disability supports in New Zealand and had the following vision:
In the future, disabled children and adults and their families will have greater choice and control over their supports and lives, and make more use of natural and universally available supports.
Demonstrations in Christchurch and the Waikato provided an opportunity to trial some of the various elements of what the new system would feature. The Enabling Good Lives approach was first developed in Christchurch to demonstrate how the principles based approach can be used to make it easier for people to live good lives of their own choosing, in communities that truly value who they are and what they have to offer.
The principles of Enabling Good Lives are:
Self-determination
Disabled people are in control of their lives.
Beginning early
Invest early in families and whānau to support them; to be aspirational for their disabled child; to build community and natural supports; and to support disabled children to become independent, rather than waiting for a crisis before support is available.
Person-centred
Disabled people have supports that are tailored to their individual needs and goals, and that take a whole life approach rather than being split across programmes.
Ordinary life outcomes
Disabled people are supported to live an everyday life in everyday places; and are regarded as citizens with opportunities for learning, employment, having a home and family, and social participation – like others at similar stages of life.
Mainstream first
Disabled people are supported to access mainstream services before specialist disability services.
Mana enhancing
The abilities and contributions of disabled people and their families are recognised and respected.
Easy to use
Disabled people have supports that are simple to use and flexible.
Relationship building
Supports build and strengthen relationships between disabled people, their whānau and community.
Some key outcomes of Enabling Good Lives include increased choice and control over supports, citizenship via people participating in their community, and a much more simple to use and understand disability support system. In the MidCentral, all the elements will be rolled out at the same time and available to everyone, effectively replacing the old system.
The high level design of the new system was built from a co-design process where the Government were provided with an idea of what the new system that underpins all the EGL Principles would look like.
Key elements of the new system (based on advice) included:
- Multi-channel disability information
- Capability funding for disabled people & whanau
- Self determined pathways
- Self managed information systems
- Support tailored to the person & whanau
Enabling Good Lives is an approach led by disabled people and families, making more use of natural and universally available supports. It’s about systems change across Ministries – Health, Social Development, and Education through self-directed facilitated support that actively supports disabled people to have greater choice and control over their lives and supports. Cross-government individualised and portable funding would provide disabled people with personal allocations that can be used more flexibly to purchase supports and services.
Co-design group supporting papers – A
Summary of high-level design and thinking from co-design process.
Reflections #1
The new design is essentially trying to create greater flexibility, providing the opportunity for support that provides more enrichment instead of just focusing on the core care aspect.
What does the High Level Experience Look Like?
Starting from disabled people and families looking for information, connecting with those who can help, having discussions and thinking about what a better life would look like, putting the support in place, and finally, having an outlet for help if needs change.
The new system will also have the ability to respond to crisis situations and work together in an efficient manner with disabled people and whanau. Furthermore, the new system will be warm and welcoming to disabled people and whanau, working in a way that is most comfortable for them.
Reflections #2
It’s important to realise that sometimes there is an immediate need for support. They need help, but what they don’t need is the extra stress of having to deal with seperate agencies.
What’s it like being a part of the Waikato EGL Demonstration?
Mike Pulman has been a participant of the Enabling Good Lives demonstration in the Waikato since early 2016. As just one of 299 active participants, Mike has been amazed at how simple the process of EGL has been, from finding a connector, to planning a new life to move out of residential care whilst not just focusing on the core care aspect of his life.
The key difference between the EGL process and traditional support models is its strength-based approach. For Mike, talking about what supports he needed put in place to achieve his life goals, outside of just the service delivery support aspects of care.
Reflections #3
Due to the large waiting list in the Waikato, and an expected 1600 users in the MidCentral, Mike says that there is a need for more connectors. The key role of connectors is to work with the disabled person and their whanau as one unit.
Key points from Part B papers
A variety of Support Network Options are promised in the new system and are crucial to disabled people and whanau because it provides more platforms for people to have a voice.
Families work out what they want to do and how they are going to get there. The connector chosen is important, because if the relationship doesn’t work, the likelihood of positive outcomes is far less.
Use of funding should be able to cover less traditional means of support, for example why can’t a person use a portion of their funding to cover course fees for a semester or invest in
Signalling a change is crucially important in the new system because needs change overtime, and the system needs to have a funding model, as well as an approach, that caters to that. Easily reachable connectors, access to information, and finding out if the changes required are possible with existing resources.
The role of the Connector/Tuhono features several different layers, but crucially, they need to understand people and whanau in their context. Trust building and investing time is important as the whole process is not something that should be expected to happen overnight, with the building blocks put in place over time. It is important to connect the right people together.
Co-design group supporting papers – B http://www.enablinggoodlives.co.nz/dmsdocument/165-system-transformation-high-level-design-part-b-20-7-17
Ministers Announcement LIVE from Palmerston North
Ministers Carmel Sepuloni and Julie Anne Genter announced that the initial rollout of the new system would begin in the MidCentral on October 1st with a budget of $23.8million (including allocations for continuing the Waikato and Christchurch EGL demonstrations).
Initial reactions to the announcement
Apart from the financial figure and the start date, we saw and heard very little today. It was more high level than we were expecting, and they reiterated several times that they are not going to get it right straight away.
Having a start date is great news, but until we actually see the cabinet paper there is little else to take away. This whole process from start to finish has been a cautious one, and it does make sense to roll out in the smaller regions, because you want to use that try, learn, and adjust approach and not fail large amounts of people on mass.
Cabinet Paper summary
Show end
It has been a privilege to be here with you today. We will close it off now, and another thank you to everyone watching. Thank you for being part of the channel, thank you for being part of the journey, and we will see you for the next one!