User-led organisations - What are they?

Some disabled people leave for their homes after attending church meetings.

Are you new to understanding user-led organisations? This post explores some of the common terms.

An organisation refers to a collection of people, who are involved in pursuing defined objectives. It can be understood as a social system which comprises all formal or informal human relationships.

A user-led approach refers to any approach guided by the needs and priorities of the people using that service. This includes meaningful consultation, engagement and improved systems for feedback and grievances in both civil society organisations and state-run services.

A user-led organisation in the area of mental health and disability is an organisation that: 

·  is led and controlled by people with disabilities, including people with mental health conditions.

·   actively demonstrates their commitment to people with disabilities, including people with mental health conditions, by employing staff and volunteers with disabilities; and

·   actively demonstrates their commitment to removing the societal barriers that prevent people with disabilities, including people with mental health conditions, from attaining their fullest lives.

People in Ghana with disabilities, including people with mental health conditions, told us that they want to include the following definition:

·         a user-led organisation is where the majority of the board and at least 60% of staff in management positions are people with disabilities, including people with mental health conditions.

The importance of the user-led approach in the mental health and disability sector cannot be under-estimated. There is strong evidence that user-led approaches to delivering services for people with disabilities, including people with mental health conditions, are more effective when they reflect the diverse priorities and needs of the very people who need and use the services. To be done properly, the user-led approach requires an investment of time to develop collaboration between service providers and service users, and a balance between partnership, delegated power and some level of citizen control or ownership over the design and delivery of services.

In Ghana, there are two broad categories of user-led organisations:

· Disabled People’s Organisations (DPOs): central to this definition is that these are organisations of people with disabilities, with a focus on matters relating to the concerns of people with disabilities, including people with mental health conditions. This is distinct from organisations which undertake activities or services for people with disabilities but are not led by people with disabilities. DPOs are usually user-led, but some may not meet every definition of being user-led.

· Self-Help Groups (SHGs): these groups are a formal or informal group of people with mental health conditions and/or their families, with a common interest to promote their well-being and improve access to services.

With this explainer, I am sure you now know what the term user-led organisations is, and how to use it in all of your communications going forward. See you next time with explanations of more terminologies. This user-led summary has more. Do read it!