Sometimes references to the Enabling Good Lives (EGL) Principles & System Transformation are used interchangeably with each other, however they refer to different things.
EGL – is a set of principles that guide the process of system transformation that is currently happening in the disability support system within New Zealand.
Sometimes people refer to the ‘EGL approach’, this refers to disabled people and their whānau using the EGL principles to increase the choice and control they have in their lives.
System Transformation – is about transforming the existing disability support system and includes everything that needs to happen for that to take place.
The best place to find out about EGL and System Transformation is the Enabling Good Lives website. The Office for Disability Issues also has good information, including key messages and what the EGL approach means for disabled people mean.
The EGL Principles
On the 11th September 2012, the Ministerial Committee on Disability Issues agreed to “a vision and principles to guide future changes in the disability support system”.
The vision for the new system is to ensure that “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”.
For some years, the disability community has expressed concern that the current disability support system unnecessarily limits disabled people’s choice and control over their support and their lives.
These concerns were reflected in the 2008 Report of the Social Services Select Committee on its ‘Inquiry into the Quality of Care and Services Provision for Disabled People’. They were also acknowledged in the Government response to the Select Committee’s report.
Central concerns of the disability community have been:
multiple eligibility, assessment and planning processes for accessing different types of support from several government agencies;
being allocated existing contracted services, not necessarily what works best for them; and
disability services becoming the ‘hub’ of their lives, rather than helping them to connect to support available to everyone in the community.
(Cabinet paper, 2017, System Transformation)
Discussions about a ‘transformed system’ led to the view that there should be a single, consistent and nationwide system with the disabled person firmly at the centre. Importantly system transformation has been led by disabled people and whānau, who have leadership roles and are key decision-makers. Here is an initial reference for carers/family/whānau on the transformed system.
Christchurch, Waikato and MidCentral
There have been three demonstration sites (where they are trialling the ‘new’ system). The Christchurch and Waikato demonstrations were only available to a small group of disabled people in each area, and targeted specific groups ie. school leavers in Christchurch and four priority groups in the Waikato.
The demonstration in MidCentral is referred to as the MidCentral Prototype and this is different from the previous two demonstrations in that it applies to all the people in the area and will result in changes to the whole system (replacing the current system).
Decisions on the final model and expansion beyond MidCentral will be sought from Cabinet in late 2020.
A co-design process was used to look at what a ‘transformed system’ might look like and to create a high-level design for the new system. The co-design process started in March 2017 and ran through to June 2017. The co-design group held 8 workshops over ten days during this time.
There we’re 13 members of the co-design group which included five disabled people, two with disabled family members, two from disability service organisations and four from government agencies.
In the ‘new system’ the disabled person and whānau can choose a Kaituhono/Connector who can help them navigate the ‘system’. It will be useful to understand, as you enter this ‘new system’ what role the Kaituhono/Connector plays in this process. In MidCentral through Mana Whaikaha they have identified what Connectors can and cannot do.
There are several key features that whānau want from the ‘new’ system, this includes:
having more choice and control over supports and services
having transparency over budgets (knowing how much money we have)
having clear and up-to-date information available (ie. what I can and cannot do)
getting what I need, when I need it (flexibility)
having flexible providers or service organisations who listen to what we want – and builds something that suits our situation
the ability to be the key decision-maker about who works with our family member
not having to go through multiple assessments or re-tell our story multiple times (one system – one plan)
having one plan that is based on our strengths, preferences, culture and goals
having trusting relationships with key professionals and that my voice is heard
being able to become ‘mum’ or ‘dad’ rather than the ‘carer’
being able to connect with people who help us understand options and what is available (ie. Kaituhono/Connectors).
The table below illustrates the difference the current and new approach will have for disabled persons and whānau.
Part of system
NASCs and providers each produce plans that affect my life.
I plan what I want my life to look like and work on my goals in life (with help from an independent facilitator, if I choose).
I go to the NASC and they assess some of my support needs. I may be assessed by other agencies for other support needs.
I complete a single supported self-assessment for all my support.
I am allocated specific types and levels of services (eg, to get ready in the morning).
I receive a single personal budget for all my support.
I can choose between several DSS contracted providers of the services I have been allocated.
I can choose how I buy my support (eg, existing services, flexible provider contracts, hosted individualised funding, flexible disability services, or I can manage it myself and buy services from anyone I want).
Who supports me
The agency sends me people – I may not get to choose who supports me or when they come.
I can choose how to employ my staff. I can choose where I live and who I want to support me (eg, people my own age) and when they come.
Attitude towards family and other natural support
Funded support complements my existing natural support.
My existing natural supports are valued and nourished. There is strong emphasis on developing new natural networks.
Services mainly focus on my immediate situation and needs
Support responds to my immediate situation. In addition, early investments and innovative approaches are possible which will improve my life in the future.
(Cabinet paper, 2017, System Transformation)
Some of the key questions whānau have includes ‘how is this managed’, ‘do I have to change the way I currently do things’, ‘if I want to change, how do I do this’ and ‘what if I am happy with my current supports and services’? The new approach is meant to be flexible, so you can look at different options or continue to have supports and services provided as they currently are.
There are, in fact, a range of ways you can use the resource, from supports remaining the same to exploring new options. From total self-management of the personal budget to having someone else manage it for you (see continuum below). You will be able to discuss your options with your Kaituhono/Connector and choose what most suits your situation based on what you want to achieve.
I/we choose someone to provide me with support and I/we contract them to do so
I/we choose who provides me support and someone manages everything else
I/we choose the people, train them etc, and someone employs and manages my support for me
I/we want to manage everything myself/ourselves but need additional help and guidance while I am learning to do it (e.g. employment advice, training provided for my staff)
I/we choose to manage everything (budgets, training, employment) myself, and I/we get reimbursed for doing so
One of the positives coming out of EGL Waikato, EGL Christchurch and the MidCentral Prototype is the capacity for people to hold personal budgets, this provides more say so and authority and opens-up what a ‘good life’ can look like. Many people are reporting that this makes a big difference in their lives. Personal budgets have less rules than Individualised Funding.
Those in MidCentral can apply for funding through the MidCentral Capability Fund. This fund can be used to build the skills and capability of groups of disabled people, families, whānau and aiga.
Some examples of things that could be funded:
Group of families coming together for workshops and wānanga to share ideas and plan for their disabled teenagers’ future.
Project to develop marae-based supports for disabled whānau, hapū and iwi members.
Project linking young disabled school leavers with mentors and buddies to assist them to make community connections and join activities.
What makes a good support service – seminar and resources on what to look for when choosing a disability support service.
Managing your individual funding and being an employer – series of workshops for disabled people and families.
Te Pou o te Whakaaro Nui – provides funding for workforce development for the mental health, addiction and disability sectors in New Zealand.
Applications for Workforce Development Grant, Training Grant and Consumer Leadership Development Grant can be made by anyone on Individualised Funding (IF) and individuals registered in the MidCentral disability system transformation roll-out for the learning and development of their employees.
Contributing to System Transformation
This is a high-level overview and shows the key relationships that disabled persons and families have in influencing decision-making regarding the transformed system. It is important to note there are constant changes aimed at improving how things work and this could result in changes to this diagram.
Core Groups – broad based and ‘open’ influencing groups with links to the Regional Leadership Groups. Local core groups include disabled people, whānau, Mana Whenua, Pasifika and providers.
Regional Leadership Groups – an ‘influencing’ group with links to Ministers, senior officials and regional disability community. Regional Leadership Groups are made up of representatives from members of local ‘Core Groups’ (see above). They provide information to the Leadership Group from the core groups they represent.
There are different regional leadership groups, for example, the MidCentral Leadership Group provides advice and support for the Mana Whaikaha Prototype in MidCentral.
EGL National Leadership Group – an ‘influencing’ group with links to multiple Ministers, senior officials, disabled people’s organisations, family organisations, provider networks and the national disability community.
This group safeguards the EGL vision and principles through, for example, providing advice to Ministers and the senior officials group on whether the transformation reflects the EGL vision and principles. It also provides the disability community input to, and advice on, current and future initiatives involving changes to the disability support system.