Introduction
This is Jodie and she works at Speakup.
This is Vicky and she also works at Speakup.
Speakup is a self-advocacy organization in Rotherham in the UK.
Jodie and Vicky are co-researchers.
Together with university researchers they are asking how are people with a learning disability doing at a time of cuts in the UK?
We are all working together.
What we are doing
We are talking to people with learning disabilities, their families, friends and allies.
Spending time with people with learning disabilities in self-advocacy groups, at work and in circles of support. Finding out about whether The Big Society idea is creating opportunities for people with learning disabilities in society.
What the government says Big Society is…
Communities doing more for themselves.Volunteering in your community.
The government is saying they will do less and local and voluntary groups must do more.
What do people with learning disabilities think the Big Society is?
As part of our research we asked people “what do you think Big Society is?”
Here are some of the things they said…
We are not sure what Big Society is!
We think it might be about different communities working better together.
We think that Big Society is just another name for funding cuts.
People also said…
We think that some people with learning disabilities are becoming more lonely.
We think this is because there are not so many places open for them to meet.
We have noticed that services for people with learning disabilities have closed down.
People said…
Friendship Circles are important. Having a friendship circle helps us to enjoy our life and helps us when our lives get heard.
It’s important to have people who you trust in your life.
People also told us…
People with learning disabilities have got families, friends and jobs.
People with learning disabilities are speaking up for themselves.
People with learning disabilities are having their say on partnership boards, National Health Service commissioning groups and on Care Quality Commission Inspections.
We have asked people… What is self-advocacy?
How has self-advocacy helped you or other people?
Why self-advocacy still matters?
What would happen if you self-advocacy services were cut?
What is Self Advocacy? This is what people said…
Campaigning for things what we are passionate about fighting for our rights.
Being a rep for people with learning disabilities sharing other opinions on their behalf.
How has self-advocacy helped you or other people? This is what people have said…
Being a self advocate and coming to the self advocacy group has helped me with my social skills and speak more clearly. I have also improved on my writing skills.
Being a self advocate has helped me to asking for advice when you receive jargon information for e.g. letters I get I tell my self advocacy group to reassure me or help me understand.
Why self-advocacy still matters?
In 2011, the Disability News Service[1] reported devastating cuts to the funding for self-advocacy organisations in the UK. They reported that the number of groups who are members of People First had dropped from 120 – 97.
This is what people have said…
Self Advocacy matters because people with learning disabilities and /or autism need the chance to talk about things that affect their lives and how to improve services.
What would happen if you self-advocacy services were cut?
I would have less things to do. I would lose my confidence, I would have to find another job so that I could pay my mortgage; but jobs are hard to find for people with learning disabilities. I have two girls and I wouldn’t make ends meet. I would be lonely, my advocacy group forms part of my circle of support.
I would be lost without my advocacy service. They have given me a lot of advice around benefits and letters to help me understand what they are about.
People also said…
They are worried about benefit changes.
They are worried about services changing.
They are worried about cuts to social care.
Jodie’s story …
Being a self advocate has made me more confident in new things. I have more friends than I had at school and college.
Since I came to a self advocacy group, I have done things that I have never dreamed of doing like being an inspector for the Care Quality Commission and being a representative/trainer for different projects.
It is important that self advocacy services are not cut.
Some important messages from the research so far
It’s important that self advocacy services are not cut because speaking up for yourselves/sharing what you have learnt with others giving other people confidence.
Important Messages
It has given me job experience and more understanding of other people, it has given me more confidence.
I have got good I.T. skills and I have had a chance to use my skills.
I am also a trainer for My Health and I’m A Person Too which are training courses to train doctors, nurses, the job centre, the police, receptionists and students how to work with people with a learning disability and/or autism.
As part of our research called The Researcher in Residence Phase
We are asking our MPs and other political parties to talk with us about how to make their manifestos easier to understand so that people can vote and understand what they are voting for.
We wrote to the political parties asking for information… they didn’t reply.
Accessible information to help people make decisions is so important.
To learn more about the Big Society, Disability and Civil Society Research go to their website.
Making Space for Intimate Citizenship 