Enabling Good Lives – Principles to provide equity for those living with disabilities
EGL – or Enabling Good Lives – has recently become one of the hot topics in the disability community as we prepare for a national roll out as part of the health system transformation. Although it has been around since 2012, we ask what is it, and how will it change the way disabled people access care and support?
The Auckland Disability Information and Advisory Service Collective (DIAS) were fortunate to learn more about EGL from John Taylor, a founding member of the EGL Steering Group, and Executive Director of Community Connections, a Lower North Island support staff provider. John challenged the group to think of EGL not as a system or a process but rather as an approach and a set of guiding principles by which all providers to the disabled community can adopt.
What is Disability?
John started by challenging the group to reframe their thinking about what disability actually is. The medical definition is a “sub-optimal impairment”, with an assumption that the person needs assistance to ‘overcome’ this impairment. This definition therefore forces us to consider disability as an ‘issue’ that requires a tailored solution, differing from how we would approach services for non-disabled people.
Under EGL, the new definition of disability focuses not on the impairment itself, but rather how the impairment affects the person, or overcoming barriers a person faces. It challenges us to consider how society disables or excludes someone or has designed something that assumes everyone is the same, thus disadvantaging those with a disability.
Applying EGL thinking, the challenge now is how to adapt the system to ensure people with disabilities can live as productively as others and access services easily.
What is EGL exactly?
EGL is NOT a system, provider, supplier or process. It’s an approach with a set of Values and Principles which the system, processes and support networks should deliver to.
EGL Principles are not new. They have been around since 2012, originating from a Govt initiative led by Tariana Turia. At their heart, these principles are about how to treat all humans equitably, that ensures greater choice and control over support and makes more use of natural (free) and universally available (also available for non-disabled) supports. In a nutshell, ensuring services and businesses offer the disabled community equitable access to their services.
EGL Principles are fashioned on the Māori principles of Rangatira-tanga and include:
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.
Ordinary life outcomes
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.
Easy to use
Disabled people have supports that are simple to use and flexible.
Supports build and strengthen relationships between disabled people, their whānau and community.
How do we know the Enabling Good Lives principles work?
3 Prototype regional providers were launched between 2013 and 2017, effectively replacing the Needs Assessment Service Coordination (NASC) services provided by the Ministry of Health. Whilst each varied in their approach and customer focus, the services in Christchurch, Waikato and Mid Central North Island all followed the EGL principles in the way they delivered funding, services and support for their customers. Most importantly they returned the decision making to the actual customer, empowering customers to make decisions that best matched their individual needs and lifestyle choices.
Ultimately, the success of these prototypes led to the Government establishing Whaikaha (Ministry of Disabled People) as a separate ministry from the Ministry of Health, mandated to bring a fresh approach to all disabled New Zealanders.
What are the Characteristics of EGL service delivery
- Self-directed planning and facilitations
- Create a Living or Wellness plan, before determining the funding – not the other way around
- And involvement of and leadership by Disabled people through the entire process from needs identification, solutions, delivery and evaluation
- Cross-Govt individualised and portable funding
- Whanau Ora or inclusive approach versus battling for funding
- The funding is managed by the disabled person (or their agent) rather than by the funding agency (usually a NASC).
- Considering the person in the wider context, not just in the context of “funded support services”
- What their support network is, if they work, living arrangements
- Strengthening the family/whanau involvement
- Community building to develop natural supports.
- Environments that just do things because they know what needs to be done.
- Building relationships in ordinary life.
What Next for Whaikaha, the Ministry of Disabled People?
Whaikaha (Ministry of Disabled People) is still in formation mode as part of the health system reform, but they have established 4 ‘Partnership’ groups to develop and make recommendations on the best way to roll out the EGL principles and delivery nationwide.
DIAS organisations such as Independent Living will continue to play a pivotal role in empowering disabled people and their whanau to get the right support, and advocating with them to embed the EGL principles throughout society - with the vision to ensure disabled people have equitable access to all services (be that medical, lifestyle or employment) that non-disabled take for granted.
Independent Living Charitable Trust has representatives in EGL working groups – so feel free to contact us if you would like more information on EGL or wish to share your views on how Government services can better adapt to the EGL principles.
Click here to learn more about Enabling Good Lives: