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Enabling Good Lives, New Zealand
The benefits of a personalised, holistic approach to wellbeing also emerged from my visit to Enabling Good Lives (EGL) in Christchurch, New Zealand.
EGL is a holistic approach, based on a set of principles, to support disabled people live good lives of their choosing based on their own preferences and aspirations.
The basis is that services and supports are tailored to reflect individual strengths, preferences and aspirations. It focuses on shifting the traditional service-led approach to one that is centred around individuals and their goals and promotes independence, choice and inclusion.
Emily Hyland with the Christchurch Enabling Good Lives team
The team explained there had been notable improvements in wellbeing of people that had been working with EGL. They underlined that the establishment of a Ministry for Disabled People had played an important role in helping to bring some of the EGL approach principles to life and EGL had helped shape the transformation of the disability support system.
EGL is changing the lives, and ultimately wellbeing, of individuals with disabilities by asking “what does a good life look like for you?” giving disabled people an active voice in how they live their lives through greater choice and control over the support they receive.
From my discussions with the team I found out the reasons for the success were;
Collaboration
EGL was created in collaboration with, not for, the disabled community themselves and involved every step of the way.
Choice and control
Disabled individuals are in charge of their own funding and make their own decisions to live the life they want. This approach is empowering and gives them choice and control.
Flexibility
The approach is flexible, easy to understand and user-friendly. Getting access is important to ensure they can access what they need.
Family involved
The individual, family and support system decide how they want EGL to work for them.
Holistic
A holistic approach, looking at the whole life of the individual
Achieve
It supports disabled people to achieve desirable outcomes in training, education, employment, friends, having relationships and a family.
The work that EGL do and the difference it makes to the wellbeing of disabled people has been truly remarkable. The case studies below show how empowering it is for individuals; they are included in their communities and they are not on the fringes. This reminds me of the sentiment earlier of disabled people wanting to be seen as part of the social fabric.
“Kate loves art. For her, it's not about joining day services where they do arts and crafts, for her it was about something that was meaningful to her so working with a Connector [an independent facilitator who supports disabled people and their families to achieve their goals] she set up her own business and goes round local markets and sells her arts and crafts. She is now an artist.”
“Ella is physically disabled but she’s always wanted to go scuba diving. By giving her a VR headset and allowing her to experience scuba diving, she has been able to make her dreams come true. It's not about her being disabled but it’s about living in a community that allows her to do what she's always wanted.”
“Ethan loves rugby. His dad played, all his brothers play. He wanted to play. He used to play tackle in the front yard but he was never able to join a team. So with his connector he found a group in Christchurch called ‘All abilities rugby group’ and he has joined so it has meant that he can play rugby, just like he’s always wanted”
“In 2022 two friends with learning disabilities decided they wanted to live together. They spent 2022 learning flatting skills - washing, cooking and getting to and from work. In 2023, EGL helped them find a rental flat with shopping centres, buses near them, not too far from work, doctors etc. One of the women, Brooke said "we are so proud of each other and our families are so proud of us and we have created such a warm, friendly and clean home"
I discovered that a huge part of the success was consulting disabled people about their wellbeing. "It's so important, it's not just a courtesy, it’s needed for respectful support and also the right kind of support for them”. - EGL Connector
However Lara Draper, General Manager at Deaf Aoetoera, made an important point. Whilst disabled people should determine what a good life looks like to them, sometimes factors like discrimination, exclusion, accessibility and societal attitudes can influence this, making it challenging to articulate the true vision of how they want their lives to be. The notion of a "good life" is very similar to wellbeing; subjective and deeply personal.
By examining its key principles and look at the positive outcomes of EGL, we can learn valuable lessons for implementing a similar model in the UK, while also making necessary refinements to suit the local context and learning from some of the challenges that have been experienced during implementation.
My time with EGL brought home to me that in the UK we need to understand what disabled people really want out of life and what they want for their wellbeing rather than just assuming.
My visit to New Zealand was also a timely one as whilst I was there, Whaikaha unveiled changes to purchasing rules for disabled people's equipment and support services, with immediate effect, with no consultation, involvement or warning for disabled people and their families. This unexpected turn of events not only disrupted lives but also highlighted the importance of continued and ongoing consultation and collaboration with disabled individuals to ensure their wellbeing needs continue to be met.
I saw the impact for myself and how deeply disempowering and disheartening it was for the disabled community. The insecurity that comes with that has an impact on wellbeing. This experience served as a reminder of the necessity to respect the voices and experiences of disabled people.
The Disabled Person’s Assembly (DPA) in New Zealand works with the disability community, the Government, the wider community, media and disability service providers, so disabled people’s views and needs are heard by decision-makers. An organisation acting as a collective voice to help achieve inclusion for all New Zealanders. This collective voice is crucial and the DPA’s work highlights the need for a collaborative approach to supporting disabled people’s wellbeing.
I spoke with Pip Townsend from the DPA who shared that the lack of consultation over changes to respite and equipment funding was appalling, and the changes have left families, carers and individuals disappointed.
She shared the themes of the feedback from their members following the funding announcements. The broad themes that came up were the respondents were concerned about reduced social wellbeing, loss of independence, loss of job, loss of education opportunities, loss of options for carer support and respite carer, poorer health and safety outcomes, loss of ability to purchase needed equipment.
“Over one million people. These people and their families have been irreparably damaged by this announcement to ‘pause’ flexible funding by the current government.”
The Ministry for Disabled People has, however, had many successes, with the EGL team sharing that it has “given disabled people a seat at the table” and it's been a “real shift” leading to meaningful change with streamlined resources and support services.
Reflecting on my time with EGL, I feel there is real opportunity to learn from the challenges faced by Whaikaha that could contribute to real change for disabled people and their wellbeing here in the UK by establishing our own dedicated Ministry for Disabled People.
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