Sharing Self-Advocacy Best Practice

 

One of Learning Disability England’s priorities is to support self-advocacy to get stronger.

 

We know that many of our self-advocacy group members are leading the way on important work.

We know they are often so busy that they don’t get to share their work or connect with others

 

We were given some funding by RTR to help self-advocacy groups share their best practice.

We are holding a series of sessions to do this.

 

 

We have put this page together so you can watch their presentations and find their contact details

 

 

 

Click on each title to jump to that section.

 

 

Session 1: Tell us what you are proud of

 

 

Session 2: Making self-advocacy accessible for people with PMLD

 

 

Session 3: Filling the gaps: what has self-advocacy being doing during the pandemic

 

 

Session 1: Sharing Projects we are proud of

This was our first meeting

Ee asked three self-advocacy groups shared projects that they are proud of.

The groups told everyone what their project was about and why it’s important.

 

 

 

Dorset People First spoke about their women’s group
Jump to their section

 

Inclusion Gloucestershire talked about engaging with health
Jump to their section

 

People First Forum talked about their Mix It Up DJ Project
Jump to their section

 

 

People First Dorset spoke first.

 

 

Kerry and Mark told us about their women’s sessions.

They told us the groups were important because they helped people be more confident.

They also helped people learn about women’s health issues

 

You can download the presentation here

You can watch their presentation here

 

 

 

Inclusion Gloucestershire presented next.

 

Sammy and Rosie talked about how they are engaging with health.

They talk about setting up a user-led group.

The group thinks about health messages and how to help more people get involved in health.

 

You can download the presentation here

You can watch their presentation here

 


 

 

People First Forum were our final speakers.

 

Daniel, Emily and Amanda told us about their Mix It Up DJ Project.

The project started small with a few people learning to be DJs.

The group now perform at festivals.

 

You can download the presentation here

You can watch their presentation here

 

 

Session 2:

Making self-advocacy accessible for people with PMLD

In the first session people told us they were worried they weren’t getting self-advocacy right for people with ‘profound and multiple learning disabilities’

We asked some groups and people to be part of session 2 and share what they were doing to be more inclusive

 

Campaign4Change

Campaign4Change are a self-advocacy group

They told us about the campaigning they have been doing

 

 

They talked about when they held a workshop at the LDE annual conference

They shared some of the presentation from the conference

They also told us about the things that we need to think about to make sure people with high support needs can be presenters

 

A Family’s View

The second presenters were Virginia and Steve.

Virginia is Danny’s Mum

Steve is Joey’s Dad.

 

Danny and Joey both have labels like ‘PMLD’ and ‘high support needs’ and have struggled to get involved in self advocacy

Virginia and Steve both think self-advocacy is really important

They think we might need to talk about self-advocacy differently to make sure everyone can be involved.

 

 

 

Session 3:

Filling the gaps: what has self-advocacy being doing during the pandemic

 

During the pandemic, self-advocacy organisations have been going above and beyond for their members.

 

They have made sure people have accessible information, aren’t isolated, and have practical help when they need it.

 

Research from the Open University says they have been ‘filling the gaps’ left by the government, local authorities and other services.

Session 3 was about this research and what groups have been doing.

 

 

Filling the Gaps

We started off with the OU team telling us about what they found

You can download the slides and contact details here

 

Research links

You can read the easy read report here

You can read the executive summary here

You can read the full report here

 

11 self-advocacy groups took part in the research, we asked 2 to tell us what they had done

 

Ace Anglia spoke first.

 

Mark and Chewy told us about how they have been keeping in touch with people, creating easy read guides and helping people get online.

 

Sunderland People First spoke second.

 

Matthew and Samantha told us about how they have been connecting with other self-advocacy groups across the UK and internationally.

 

Keeping Well and Staying Connected

The OU team then told us about their other research project about the support people have had to use technology and stay connected.

You can download the slides and contact details here

 

Research links

You can read the easy read report here

You can read the executive summary here

You can read the full report here

 

 

You can watch the whole session here.