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"I’d love to get involved with sort of signposting people to services and stuff like that’"

Finding out relevant information is a core part of making informed decisions in our life. Social care is now less about going to one place like a day centre for up to five days a week and more about having a choice of different day opportunities. Finding out about these opportunities is needed in the first place. Also,

We heard that finding out relevant information was a major obstacle to people in self-building a more meaningful life in their communities. Support is not always available, promoted or joined-up. With personalisation, support is becoming more decentralised, and taking place outside hubs such as day centres, and moving into community settings. The range of people involved has also increased, including community members, peer-support coordinators, advocates, personal assistants and support workers. Support organisations have also had to focus on working more closely with local amenities such as libraries, leisure centres, bars, coffee shops, and museums, who are recognising their allied role in community care provision. As a result of these changes, navigating this landscape is a major obstacle for people with learning disabilities and their supporters.

Many people with learning disabilities we spoke to said that finding relevant information and guidance was difficult.

This view was supported by many organisation managers, who recognised that role they play:

"We’re not an information type of organisation but again if somebody was struggling with that, or if we knew that there was a problem, that’s when we would come in and then direct them to people who can help." (Casey, manager, Friendship Meet Ups).

Hazel (manager, Farm Day Activities) suggested there needs to be a better intermediary between people (and their personal budgets) and providers which can inform people of what is available.

"I don’t know, but something needs to happen in between the money and the providers, I don’t know what it is or how it is but I’d love to get involved with sort of signposting people to services and stuff like that, but I don’t know if that even exists or if there’s funding for that". (Hazel)

This culture of acknowledging and recommending other services seemed under threat, according to one manager:

"we were competitors, but we would signpost. So, if somebody came into me and they weren't right, I'd signpost them… we were able to work alongside each other. We were able to get together and have meetings … we could visit each other’s services and we'd have a day here and it was brilliant…. That has changed. And it's changed in the last three of four years." (Margaret, manager, Community Day Activities)

A number of providers also reported a lack of awareness and engagement from local social workers.

"I don’t get any visits from social workers, nothing. Where quite often we’ll get a word of mouth referral and then social services are ‘oh, this is lovely, never knew you were here’, I say ‘oh, really, [laughs], we’ve been here for a long time’." (Hazel, Farm Day Activities)

In two of the areas that we examined, the local authority with the local Clinical Commissioning had undertaken a community assets mapping exercise across specific parts of their region. While useful, given the nature of change in the sector, this only offers a snapshot in time and is likely to go out of date quickly.

What learning is involved?

For finding out information, people with learning disabilities needed to learn what sources of information were available and how to use them. This could mean developing skills in literacy, especially digital literacy (searching, using the web, using online social networks). They learned who to trust to help them and how to share information amongst themselves. Allies had to learn too as the situation was different in different regions and at different times. All this learning was sometimes more difficult than it needed to be or would be if greater attention was giving to communicating information in more joined up and accessible ways.

What more can be done?

Local Authorities could ensure that information and advice is readily available in different formats (not just digital) and updated regularly. Local authorities and providers can work together to create a list or directory of all services and activities in an area. Greater communication between providers can also foster a culture of collaboration and the development of a wide range of services that are complementary rather than competitive. Local authorities can support this by holding events to showcase social care providers and other services.