Uncharted territory

Five years ago this week four people with learning difficulties, bored with their day centre routine, decided to enhance their quality of life. Raymond Abela, Jane Lack, Laverne Thomas and Ramdas Laxman started an information group to find out what was happening in Tower Hamlets, east London, and learn how to speak up for themselves.

They found a room to use for one day a week thanks to a local disabilities organisation and decided to find out what the council was doing for people with learning difficulties. They sent a newsletter to all day services in the borough. A service user committee in one centre read about the group and proposed they join forces – and so the Map Squad was born.

The group now has its own office, 25 members, is open five days a week and has become the leading voice in Tower Hamlets on services for people with learning difficulties. “We are a speaking-up group and we’re all about people’s rights and changing things for the better,” says group member Francis Cosgrove. “Things like independence, getting new skills, having our own money, getting jobs, moving into our own houses and being treated as adults.”

And the effect is out there. “When we first went to day centres there were no opportunities,” says the Map Squad’s David Gallagher, “but now there are other things to do and people are able to say what they want and choose.”

Having the right to choose is central to the group’s work. Indeed, its name reflects the importance of choice: Map stands for “Moving about places”.

To its credit the council now regularly pays the Map Squad to carry out consultations. One of the first things the council asked the group to do was put together a series of roadshows to find out what sort of housing and support people wanted and needed. The Map Squad combined talking, painting and drama to help bring out people’s views and ideas.

The learning difficulties partnership board then asked the group to write the borough’s plan for modernising day services. It did, but called it “The plan for making day services better in Tower Hamlets.” Published in February last year, it was, says Abela, “a massive piece of work – it’s 106 pages long”. This impressive document, also available on CD, is written in simple, everyday words and pictures.

To find out the views of service users, the group held six workshops, two of which had a speaker of Sylheti, the language spoken by most Bangladeshis in the UK (Tower Hamlets has the largest Bangladeshi population in the country). After a slow start, 51 service users eventually got involved. The group used a large model of the borough – which it designed and built. The model, shortlisted at last year’s Community Care Awards, used small blocks of wood with a photograph and the name of a day centre pinned to it.

“We also put in how much a day it costs to go there,” adds group member John Edwards, “and people – who didn’t really want to go to a centre anyway – were shocked at how much it cost.”

“The idea of this piece of kit,” says Gallagher, “was to be very hands-on. So you could move pieces around and it was a great tool. At one point we couldn’t get people to leave!”

Naturally, not all their work is on such a scale. People drop in to use a computer or to find out what’s happening.

The future holds few fears. “We’ve been talking about moving some of our new projects out so they can start in their own right in the community,” says Gallagher. “The Map Squad would be like the mother ship but these projects would have their own names.”

And with confidence and five years’ experience powering the mother ship, the Map Squad is boldly going where very few have gone before.

Lessons learned

• Make the right impression early on. Keen to find out what the council had in mind for services in the future, the group gatecrashed a presentation on the council’s community care plan. Unclear about what was being said they stood up and said: “Sorry, we don’t know what you’re on about!” When asked who they were, says Francis Cosgrove, “I said, ‘We’re the Map Squad!'” For its part the council took note from then on. Already born, the group had now arrived.  
• Use creative ways to find out what people with learning difficulties think, want and need. For example, the group used drama and painting as well as just talking during its housing roadshows.  
• Keep things simple so everyone can understand. Again, during the housing roadshows it became clear that people needed more time and accessible information with pictures to look at housing choices. For example, a lot of people didn’t understand what a group home was like until someone in the group explained.