This relatively new social movement for disabled people could be good news for people living with FASD, their caregivers and whānau.
What’s EGL about?
Enabling Good Lives (EGL) is a new approach to the support of disabled people. It originally came from members of the disability community who developed the concept. In 2012 the New Zealand government agreed to adopt and implement the EGL approach and principles across governmental services. Whaikaha (the Ministry of Disabled People) has been tasked with progressively rolling it out across Aotearoa in the coming years.
Its intent is to give more choice and control to people with a disability as well as their families and whānau, about how to make good lives for themselves and about the services and supports they receive.
An important element of EGL is a progressive societal shift in thinking about the disability community.
The social model vs the medical model of disability
The medical model has been the accepted way of thinking about disability since the Industrial Revolution or earlier. It assumes that disabling impairment is a problem for the disabled person and they need to adapt or be ‘fixed’ to fit their environment and their society.
The social model of disability has been gaining traction since the disability rights movement in the 1970s and 1980s first proposed it. It holds that rather than impairment disabling a person, the barriers created by an inaccessible society are the disability.
The New Zealand Disability Strategy adopts the UNCRPD’s ‘social model’ of disability and has given rise to the Disability Action Plan 2019-2023.
The Enabling Good Lives vision
“In the future, disabled people and their families will have greater choice and control over their lives and supports, and make more use of natural and universally available supports.”
Both this vision and principles below are based on respecting and trusting people with disabilities and their families and whānau to be the decision-makers about their own lives.
Underpinning the EGL vision are eight core principles as follows:
Disabled people are in control of their lives.
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.
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.
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.
Disabled people are supported to access mainstream services before specialist disability services.
The abilities and contributions of disabled people and their families are recognised and respected.
Disabled people have supports that are simple to use and flexible.
Supports build and strengthen relationships between disabled people, their whānau and community. To find out more about the history of EGL, the approach and principles click here.
Is FASD a disability?
Yes. FASD meets the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) definition of disability. It is a brain and body-based disability that materially affects a person’s ability to participate equally and equitably in society.
FASD is also acknowledged by the Ministry of Health and Whaikaha as a disability. However, unlike other disabilities, people with FASD and their families are not eligible for Disability Support Services funding unless the person also has an intellectual disability (specifically an IQ below 70) or a debilitating mental illness.
FASD-CAN is actively working to get this inequity addressed as soon as possible.
How might EGL affect a person with FASD and their family and whānau?
New Zealand has been criticised for its slow roll-out of the EGL approach by the 2022 UNCRDP Review Committee, who recommended it be expedited to all people with disabilities.
The Review Committee specifically identified that EGL should include those people with FASD.
The Committee also recommended the New Zealand government ensure that people with FASD, along with other chronic conditions, “have access to the disability support system and are included in disabilities policies and programs”.
Implementation of an EGL approach in New Zealand’s education system was also considered as part of the recent Highest Needs Review undertaken by the Ministry of Education (MoE). Cabinet has asked MoE and Whaikaha to work together to consider how EGL can be applied in the education system.
As of late August 2023, the government has accepted the Review Committee's recommendations “with modifications”. Whaikaha is the lead government agency tasked with implementing this action and it will report back to Cabinet at the end of the year about its planned work to achieve this outcome. As yet, there is no indication of what “with modifications” means for the rollout or the inclusion of those with FASD.
However, the key message is that people with FASD and their caregivers, families and whānau need to be aware of EGL and that, if appropriately designed and implemented, positive change is on the way.