Debunking Enabling Good Lives myths
Protecting EGL and the disabled community
Kia ora friends,
We hope you are doing OK. It’s been an uncertain time in the community and we know things have been really tough. We are proud of the courage shown in the Did you vote for this? campaign and in the face of more funding potentially being frozen.
In particular, we want to recognise the efforts of parents and carers in the community who have held protest action over the last few weeks. We know how tired you are - you do not stand alone.
More than 300 people protested in New Plymouth, telling the government ‘We’re not going to back down’. Other parents have shown courage in sharing their stories with the media - Parents of man with severe disability frustrated by care funding change.
Further reading:
Dreams, realities, and the broken promises of disability support in Aotearoa New Zealand
Kiwis caring for disabled family members being pushed to the brink
Disability community marches in protest against Government changes
Warning some resthomes may be forced to stop caring for people with disabilities
Some good news
In positive news, advocates had a win with the announcement of funding for type one diabetics to have continuous glucose monitors and insulin pumps. This has been a very hard fought for win for the community.
The Weekly shared the story of one young advocate:
Debunking EGL myths
It’s important that we debunk myths about EGL. Thanks to the National EGL working group - a discussion paper NEGL guidance to leaders working for positive change at this challenging time was published last month.
There’s some great advice too that we wanted to highlight from the paper:
Hold on to the optimistic expectation that positive change is possible. Keep your expectations high and work for them. Resist any pressure to lower your aspirations. Remember you have hundreds of disabled people and families that have already invested in describing how positive change happens. Hundreds of disabled people and families have already experienced better ways of doing things. All disabled people and their families should be able to experience the same.
The Paper also debunks myths. We hope the community will work to debunk the myths being spread about EGL.
There is a myth the EGL is a postcode lottery and therefore unfair.
This misrepresents the rationale for why there are three “EGL sites”. The concept of having three sites was not to exclude anyone. The purpose of having the governments response to EGL contained in three sites was so that these sites became the place where disabled people and their families could co-develop ideas, monitor what happens and learn. Limiting system change to three sites was to provide the chance for real partnership and understanding to happen before system change was expanded throughout the country. It was always intended for the “pilots”, “demonstration sites” and prototype site to inform national change.
When it became clear how to successfully bring about positive change, and when there was evidence these changes had positive outcomes for disabled people and their families, then the changes could be “rolled out”. These “sites” have fulfilled their function. We know what to do and we know how to do it. People report better lives due to co-developed, tried and tested EGL-based changes. What didn’t happen was for the system changes to be incrementally expanded throughout New Zealand so everyone could benefit from the new and better way of doing things.
There is a myth that EGL does not work for everyone
The beauty of EGL is that it is intended to be interpreted by individuals, families, cultures and communities. EGL is not a programme or project with set rules. EGL s a way of seeing things and doing things that will vary and evolve. There are now hundreds of examples of how the EGL approach has been successful for a wide variety of individuals, families and communities.
There is a myth that we must now enter a period of disabled people and families being asked what they need and want (consultation)
Disabled people and families have been clear about what they need and want for over a decade. There have been multiple reviews and papers. There are substantive documents that clearly describe what disabled people and families need, want and don’t want. The UN Convention on the Rights of Disabled People, the Abuse in Care Report and Enabling Good Lives all describe in detail what people need and want. Not only is what people want well described – but, how this can happen in practice has also been co-developed in the three EGL sites and in the high-level design process. Disabled people and their families don’t need to describe what they want. They need to experience the change they have already described.
There is a myth that EGL is controlled by a small group of disabled people and families
EGL is still evolving. The EGL National Leadership Group (NEGL) promotes and supports the honouring of existing disabled people’s organisations and family networks as well as the development of regional leadership networks to inform, influence, monitor and adapt regional initiatives. These regional leadership networks are an initial stage of EGL-based change that provide a local and accessible mechanism for the diverse community to come together and collaborate for positive change.
We hope you are doing OK in these strange times. If you’re finding it hard, be kind to yourself. You are not alone. Our DMs are always open if you want to vent on the Awhi Facebook or Instagram page.
Lifeline Aotearoa is a free support and mental health counselling service. Call them on 0800 Lifeline Or Free Text Help (4357).
Advocates to follow on Instagram: Katy Thomas, Empower Learning Project, Rebekah Corlett, Child Poverty Action Group, Jenn Has ADHD, Disabled People Against Cuts Aotearoa, Dr Bex, CCS Disability Action, T1DMastery - let us know your favourites so we can share their accounts.
Arohanui, the Awhi team.
Like every other supposed support structure for disabled people, we've heard NOTHING about it. Not one thing. Everything we have achieved for our son with Down Syndrome has been engineered by us. There's no communication strategy, people with disabilities and their support structures have to do ALL the legwork, and I don't seen how this is any different.