Finding Out Information
"It's so tricky finding out what's on"
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. But finding out about these can be a challenge. People with learning disabilities also want information and guidance on things like benefits and support.
"Lots of people are still saying, “Where do you get this help from?” And you'd think we'd have moved forward now a little bit." (Yvonne, Self-advocate)
Some people who took part in our research used smart phones and computers to search Google for information and network with friends (e.g. on Facebook) to find out what others are doing. Indeed, Greg from a disability rights organisation told us:
"The social media side of it is becoming more and more important as well, that's been really [growing], we're finding a lot of our members are actually supporting each other through things like the Facebook page and through Twitter and so on." (Greg, Disability Rights Org.)
However, several people we spoke to who used Facebook to network with friends were not aware that places they attended and other useful services were also on Facebook, providing up to date news and information.
Use of these technologies varied, and some do not have access, the skills or the interest in using them.
Many learning disability organisations also produce regular printed newsletters updating their members with latest news and activities. These are also often sent out by e-mail to reach as many people as possible.
Being part of a local learning disability self-advocacy group or friendship network was one of the most helpful ways of finding and keeping up to date with information and enabling members to find out and share information and experiences with each other:
"it might be housing that's a problem for people, it might be relationships, it might be budgets, there are all sorts of things that affect people, social media and on-line bullying, that kind of thing. And it's an opportunity for people to come together and talk about those things that are affecting them." (Casey, manager, Friendship Meet Ups)
Organisations like these were also able to 'signpost' other organisations elsewhere.
"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)
Some organisations also provided information and guidance on specific topics, such as managing money, through workshops and training courses. A self-advocacy organisation also regularly held events for their members in which they brought together representatives from local authorities to share information about key services such as health, travel and benefits.
"When they come to us it's easier isn't it... And sometimes they have to do that because it's not accessible to get to them" (Yvonne, Self-advocacy Group member)
We found people still relied on trusted key workers and family members to find information or provide guidance. Others talked about going to volunteer centres and Citizens Advice. And whilst social workers were seen as having local knowledge and contacts to advise and make referrals, many people we spoke to were not able to regularly access one.
Even with these ways to find out information, many people found it hard to keep up with all the regular changes to benefits and what was going on. In particular, it was not helpful that often information was not all in one place. Local authorities may hold social care events like Open Days in which providers and other organisations (e.g. bus companies) can share what they do.
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. People offering support had to learn too as the situation was different in different regions and at different times.
What more can be done?
Local authorities could try to make information easier to access and understand, and to ensure social workers are made aware of the available day support opportunities.
One local authority also had mapped the community assets in their area. A community website, listing all support opportunities (e.g. from the service framework) would enable people to find out the range of things available.
