Getting Your Voice Heard

"you decide what you'll do each meeting"

One of the most important things we found was that people's ability to build a fulfilling life in their communities came from gaining the confidence to make their voice heard. Self-advocacy was key to giving people the confidence and the abilities to express themselves, make decisions and take part in discussions about their lives.

Families can be important in supporting people to have their voices heard, for example attending a meeting with them; if someone is shy, reluctant to speak or anxious, this kind of support to speak up is crucial. In some cases, people had citizen advocates who were individuals from the local community. They helped people to speak up for themselves.

Yet, advocacy is under real threat. The advocacy organisations we spoke to were struggling to maintain their self-advocacy groups. One organisation was no longer able to provide staff to facilitate their group.

The loss of self-advocacy, and its variability is a big issue. Taking part in a self-advocacy group gave people the chance to meet others and share experiences. It helped people to solve problems together and raise issues with an advocate.

One group ('Your Voice') was set up 'for people to come together and be allowed a voice'. It helped people gain the skills to make decisions: 'now you guys … decide yourselves what you're going to do, throughout the year, so you decide what you'll do each meeting' (Francis)

One person said they attend a self-advocacy group 'so you can speak up for yourself', as well as to 'meet new friends' (Amy). Having the confidence and skills to speak up was helpful when issues arose. As Amy said: “I'd go to [agency that gives support in my house], speak to one of the staff in charge. I'd just go across. I'd speak to the manager'.

Other people supported their friends and colleagues through 'peer advocacy'. This was learned through being part of a self-advocacy group when people helped each other. All who took part understood their self-advocacy role as being important. For some people, doing self-advocacy work provided opportunities to be members of committees and panels at local and national levels, representing the views and interests of people with learning disabilities. Through being involved in self-advocacy work, people felt they were making a difference to others' lives.

What learning is involved?

Self-advocacy organisations were good places for learning skills and building confidence. People with learning disabilities supported each other in tackling new challenges by offering emotional support, encouragement, and practical information. They learned to take on new roles as mentors, organisers and trainers as well as how to speak up, make decisions and raise awareness.

What more can be done?

Local authority commissioners could recognise the value of and financially support organisations that facilitate self-advocacy in their local areas, and foster connections with them.