Inclusion for people with learning disabilities
ARC’s Here and Now Inclusion Conference, Wolverhampton.
I was really excited to be running a session at the Association for Real Change annual conference in Wolverhampton which was focussing on inclusion and human rights for people with learning disabilities., especially as I was co-presenting with Shaun Webster MBE and Kate Sibthorp from the National Coproduction Advisory Group at Think Local Act Personal (TLAP) – both colleagues from my other job as TLAP”s Co-production Adviser.
The programme of the conference focussed on some of the different pressing human rights issues that are significant for people with learning disabilities and the organisations that support them including things like deprivation of liberty standards, issues affecting people with learning disabilities in new migrant communities and preventing premature deaths. As with any conference about people with learning disabilities it wasn’t long before the Winterbourne View scandal was referred to either.
The focus of our session was to encourage the delegates to reflect on the clip from the Heavy Load movie that I’ve been showing a lot lately. It illustrates perfectly how easy it is to deny someone their human rights. Their right to talk about what they want from their life, let alone the right to try and make that happen.
Seeing as though we were talking at the Association for Real Change it seemed appropriate that we talk about what real changes we could all make in our own work settings to further the human rights of people with learning disabilities. While we all recognise that Winterbourne View and similar scandals are shocking they can almost seem other worldly – like that sort of thing couldn’t ever happen where we work. But watching the above clip often provokes the same reaction, gasps, sometimes tears, as people recognise how easy it is to get things wrong and deny people their rights, and how easy it can be to make cultures like this pervasive throughout social care.
To start the session I interviewed Shaun to ask him what change meant to him. Here’s an outline of our conversation:
1) What was it like not having control?
I felt I had no power. And I had no confidence and self belief because my brother did everything for me because he thought I couldn’t do anything for my self. I felt like a kid and I felt useless and he was like my Dad. I didn’t go anywhere on my own and didn’t get to go out very much.
2) What made things better for you?
First step was getting an advocacy worker. I was struggling for money at the time as I was working for Currys two days a week. We did a action plan how to get more independent, And he helped me to sort my benefits out and he enquired about supported living for me . The Advocate help me to talk to my brother about how I felt. When I moved in Keyring it was scary and I was bit lonely but the support workers were really great and understanding and introduced me to other people and taught me life skills.
3) Can you tell us what you’re doing now?
I have lived independently for 14 years now. I can manage my bills, housework, cook , travel on my own. I got A great job and do peer to peer support both at work and for keyring. Now I can go out any time I like, where I like, with who I like. Life is great, I look forward to getting up in the morning now.
Then I asked everyone to consider some ‘real changes’ that they can make in their work. Here’s the suggestions:
- Revisit real work employment opportunities with customers that truly promote inclusion.
- Take info back to my organisation on Stay Up Late – tell our newly appointed volunteers co-ordinator about this organisation with a view to recruiting volunteers specifically for this. Or linking say office based staff to people we support.
- Changing workplace cultures: – Having visionary leadership who turn plans in to actions. Focus on sharing good practice and good news. Go beyond what we do already – get staff to share their interests and view inclusion in a holistic way.
- I want to see people with learning disabilities in paid meaningful jobs in the head office of my learning disability charity!
- Allowing staff with a vision and drive to run with it. Going above and beyond the call of duty. Harnessing peoples’ passion.
- Facilitate ‘roster developers’ in two English areas where there are people we support. Provide free training, then implement changes.
- Create opportunities for the people we support to choose who supports them to do social stuff – and when they do it finishing it too!
- People with learning disabilities being scheduled to speak in earlier conference slots before people leave (or maybe a commitment from managers staying to the end of conferences that finish at 3.30pm?). Inclusion can start with conferences about inclusion! (This is not a dig at the organisers!!)
- Get better at sharing what we do well
I think there’s some really good suggestions here and its great to hear how organisations are challenging themselves to think about what power they have to create employment opportunities and really practice what their websites preach.
The last point was a bit of a dig at the number of delegates who couldn’t ‘Stay Up Late’ at a conference that finished at 3.30pm and was discussing some very serious issues – a fair point I think, especially if we’re going to take these issues seriously.
I also wanted to get these ideas for change shared publicly, with the idea to tweet them with #MyRealChange – the idea being to get us also thinking about how we should all be much more accountable to the people we’re supporting. A couple of people asked me not to publicly share their idea because they’d need to run it past the communications department! This inspired me to write the blog ‘What’s the purpose of a communications department?’ (I have shared them because they’re good ideas but I’ve not said where they’ve come from!)
I’ve been running workshops at Provider Forums, Partnership Boards and Conferences over the past year and as the impact of budget cuts really starts to hit it really is clear that Something Better Change if we’re going to enable people with learning disabilities to enjoy their human rights. That means we need to change, we need to change the way we think, the way we work and change the systems and business models that are holding people back.