What makes a successful self-advocacy organisation?

What makes a successful self-advocacy organisation?

My Life My Choice is a self-advocacy organisation, and part of the movement about people with learning disabilities speaking up for themselves and being in control of their own lives. In a way, self-advocacy groups like ours have been successful. The idea that people with learning disabilities should have a voice is accepted in policy and happens in practice. People with learning disabilities are regularly consulted by the NHS and local authorities, and the term “co-production” is firmly embedded in the public sector.

However, austerity has proved to be a serious threat to self-advocacy groups in the UK, many of whom traditionally relied on local government funding. Despite the challenges, My Life My Choice has gone from strength to strength over the last few years. So we were invited to give our “tips for success” at this week’s Learning Disability England Conference.

We came up with eight pieces of advice that we would give to other self-advocacy groups and small charities.

1. Know who you are and what you are about

Having a clear mission is useful for choosing whether to do a project or not. As interesting as it might be, if it doesn’t help is to achieve our mission then it’s easy to say no.

Although it is sometimes tempting when we see that a member is struggling, we don’t get drawn into giving personal support to people. There are other organisations that can do that much better than we can. Instead, we choose to concentrate on issues that can help many people at once.

Finally, we make sure to practice what we preach so our values shine through in the work that we do. For example, we employ people with learning disabilities as well as telling other people that they should. As a user-led organisation, it is important to us that people with learning disabilities lead our work and profile. When the media wants to interview somebody we arrange for them to talk to one of our members, who we believe are the best people to represent what we do.

2. Don’t be afraid to take a risk

As scary as it sounds, you need to invest money to make money, or to have a larger impact. In 2016 we invested in employing a full time Travel Buddy Coordinator, instead of the project being a small part of somebody else’s role. The risk paid off – having a full time staff member enabled us to help 3 times as many people learn to travel independently over the following year, which in turn attracted more funding to help many more.

3. Invest in Communications

In 2015 we had funding to employ a Media and Communications worker. Having a member of staff devoted communications meant that more people found out about us and more people offered us work – which means we can pay more people with learning disabilities.

Having the extra capacity means that we have been able to keep an up-to-date website, regular email newsletter, engaging annual report, and case for support – all of which is useful in attracting funding and support.

4. Make Fundraising a Priority

We have invested time and money in making fundraising a priority, including sending staff on FSI training. We also pay a Fundraising consultant what might at first look like a large sum of money, but the return on investment is high, and outside specialist expertise has been invaluable to our fundraising success.

Through time and carefully planning, we have ended up with a diverse range of funding streams, including statutory funding, trusts and foundations, and earned income, which means one disappearing will not mean the end of our charity.

5. Do Good Work!

We have a range of fun and interesting projects that get attention. People like coming to Stingray nightclub, and we get great feedback from Travel Buddy, Power Up Training, and Inspections and consulting work. It can be easy to forget something so obvious, but without good projects to talk about or fund, there wouldn’t be any point investing in communications or fundraising!

6. Use People’s Strengths

We are realistic. We know that people with learning disabilities are not currently capable of managing MLMC’s financing, designing a website or writing funding bids – our learning disabled trustees employ the expertise to have this done for them.

Instead, we use people with learning disabilities to do the work that only they can do – using their experiences of having a learning disability to deliver training, advise on policy, and inspect services.

7. Take Time to Build Relationships

We have good relationships with Oxfordshire County Council, Oxford City Council, Thames Valley Police, and the NHS. We would also not be successful without our wide network of supporters, funders, volunteers and Champions. We invest in building these relationships by keeping people informed about what we are doing and inviting them to our events.

We have also invested in engaging young members to make sure the charity is sustainable. For example, we have a special young people’s self-advocacy group. We encourage members of this group to become trustees.

8. Put Effort into having a good board of Trustees

Having a board of trustees with learning disabilities is very important to us. As users and beneficiaries of the charity we find that they provide crucial insights, strong personal motivation, lived experience and often profoundly relevant perspectives that conventional boards of trustees often lack. Our trustees know what it is like to receive poor health care, the frustration and loneliness of worklessness, and the injustice of being stigmatised.

We invest a lot of time and effort in ensuring that trustees are properly inducted, trained, and supported, and as a result we have a strong, experienced, principled, and capable trustee team that provide direction and support to our staff.

We hope that these tips are useful to other self-advocacy groups, small charities, and other groups making a big difference. If you have any others of your own, we would love to hear them!


Written by Kate Tokley with help from the My Life My Choice Trustees.

Kate is the Communications and Campaigns Coordinator for My Life My Choice (MLMC). My Life My Choice is a user-led Oxfordshire based self-advocacy organisation. We raise the self-esteem, confidence and quality of life for people with learning disabilities by providing training, employment, volunteering and social opportunities for our members. Our vision is a world where people with learning disabilities are treated without prejudice, and are able to have choice and control over their own lives.

www.mylifemychoice.org.uk