Enabling Good Lives Summary

Context

In 2008 New Zealand ratified the Convention on the Rights of Persons with Disabilities (CRPD) and there was a review into how things were going in New Zealand. The convention talked about what things should be like and the review made it very clear that lots of change needed to happen in New Zealand. There were many disabled people families and allies that realised the most important thing was for disabled people and families to have more control. This means control in their lives and supports as well as the ability to lead change.

How EGL was created

The EGL approach came from the community. Between 2008 and 2013 hundreds of disabled people and their families contributed to the development of the EGL approach directly and indirectly (through networks). There were many ways disabled people and families built the EGL approach. Between 2009 and 2012 there was a group of community organisations governed and staffed by disabled people and/or families that worked with the Minister for Disability Issues. They were connected with many hundreds of disabled people and families and spent lots of time explaining how new approaches could work. In 2011 the Minister for Disability Issues invited a group of leaders in the disability sector to develop a “clean sheet” approach to positive change. This group of disabled people families and allies wrote the first Enabling Good Lives report (EGL). In 2012 groups of disabled people families and providers in Christchurch and the Waikato each had a series of in-depth meetings to explore what a new way of doing things might look like. This became the EGL Canterbury Report and EGL Waikato Report. These reports were independent and community driven. They both strongly supported the first EGL report. In 2012/13 the EGL National Leadership Group was set up by the Minister for Disability Issues. This group was made up of disabled people tangata whaikaha Māori Pacific people family members and a service provider. This group published a series of “key messages” about the EGL approach. This group is the guardian (kaitiaki) of the EGL approach.

¹ The first Enabling Good Lives report laid the foundation for a new model of understanding and supporting disabled people in New Zealand, emphasizing control, flexibility, and community-driven change.

² The EGL National Leadership Group plays a crucial role as the kaitiaki or guardian, ensuring the integrity and continuity of the EGL principles throughout the implementation process.

EGL and Māori

The group of leaders that wrote the initial EGL Report included Māori. Also some of the people who developed the EGL approach also knew about the Whanau Ora approach. The approaches overlap. The EGL approach supports that both all services and supports become appropriate for disabled Māori and also that some things are developed by Māori for Māori.

EGL is an approach and not a model

An approach means it is a general guide to how we think and do things rather than a specific ‘system’. EGL is a principles-based approach (Appendix One). This means individuals families cultures and communities work out how they want EGL to look for them. A key thing in the EGL approach is flexibility. It is universal so that it can apply to anyone in any situation.

The EGL approach and system change

There are two different but connected things with EGL-based change. There is the EGL approach which is the foundation and guide for change since 2012. All disabled people and families can use the principles of EGL in their lives and when working things out with services and supports. Secondly there is the changes that are slowly being made to “the system”. This system change is based on the EGL approach and has been successfully demonstrated in three sites. EGL-based system change will take time to happen across New Zealand.

The EGL approach

The EGL approach is about disabled people and their families having the “say so” in their lives having supports that make things easier and having the ability to influence “the system”. Some people use the term ‘disabled community social movement’ to describe EGL. The EGL principles are the basis of the approach. They help everyone think about what is important help people act in a way consist with positive change. The principles guide how the EGL approach works. The EGL vision helps us think about some of what we are wanting to achieve. EGL suggests one principles-based system across all government agencies. The EGL approach recognises disabled people belong to networks and cultures e.g. family friends and community. These networks need to be respected as being fundamental to identity belonging and citizenship. Investing in disabled people and their families is central to EGL. This means resources go to networks and organisations led by disabled people and families so they are able to build knowledge skills and connections. The EGL approach requires changes are made to communities government systems and service provision. These changes need to be built on

The changes to the system EGL promotes

The changes to the system EGL promote include the following shifts:

• Moving from assessments based on what people cannot do to having plans based on people’s strengths, preferences, and aspirations.
• Moving from people being “lost” in the system or unaware of options to people being able to have contact with an independent ally.
• Moving from the bulk funding of services to personal budgets that people have control of.
• Moving from disabled people having to only use specialist and segregated services to having all community services be available and accessible to disabled people.
• Moving from waiting until there is a diagnosis or crisis to beginning early and breaking cycles.
• Moving from officials, clinicians, and service providers making decisions about what the system should be like to regional and national leadership by groups of disabled people and their families.

EGL is about disabled people and families having control of resources so they can build what they need. This might look different person by person, family by family, culture by culture, and community by community. The main thing is disabled people decide.

Leadership by disabled people and their families

An important part of the EGL approach is that disabled people are not just able to build a good life for themselves but that they have ways to influence the disability support system and all government agencies. This includes building the new way of doing things and checking that it is working well for individuals, families, and communities.

EGL is about both regional and national leadership by disabled people and families. In March 2024, EGL-based regional leadership groups exist in the Waikato, Christchurch, MidCentral, and Taranaki areas. EGL-based regional leadership groups are beginning to be built in Northland, West Auckland, Gisborne, and the Hawkes Bay. These groups sometimes do things differently because they are all unique. All of these groups are there to promote and protect EGL as an approach and influence the way EGL-based changes are made.

In EGL some things are national. These are things like the principles, vision, and the main features of the EGL approach. However, different communities have different strengths and challenges. So while what needs to be done is the same nationally, how it is done might vary from place to place.

EGL-based system changes

The role of the independent ally The Enabling Good Lives report states that there is an independent person who can “assist disabled persons and family/Whānau to consider existing options and create new possibilities.” The degree of involvement an individual or family has with this independent ally is negotiated between the parties.

Where EGL-based system change has been piloted this role has been called Kaitūhono or Connector.

The creation and purpose of a Good Life Plan

The Enabling Good Lives report states that “all supports and services are led by the preferences, strengths, aspirations, and needs of disabled people and their families. An aspiration-based personal plan is the central document to design and measure paid supports. While the core components of plans may be similar, plans may take different forms.”

The EGL approach suggests people:

• Can make a plan based on their strengths and interests.
• Are in control of planning their support and they have help to make informed choices if needed and wanted.
• Have one plan that can be used by multiple services and supports.

The importance and general use of flexible budgets

EGL states “disabled people and family/Whānau have control of funding i.e. bulk funding according to service type will be replaced with personal budgets where people can choose how they create a good life for themselves. All government funders will contribute to one funding pool that is determined through a simple process of self-assessment (or supported self-assessment) and confirmation. Disabled people and family/whānau will be able to move their funding as their preferences and needs change.”

Appendices

Appendix One: Enabling Good Lives Vision

Appendix Two: Enabling Good Lives Principles