Planning And Finding Support
"I sometimes help people at Go Sure that require more support"
Planning for the future is often a big concern. Family can be very important for helping people to plan and find support, as well as give emotional and practical support. One Dad was worried about his son not being able to manage after he passed away. This was a very understandable concern. In our research, we spoke to many people whose Mum or Dad or both parents had passed away. We were glad to find examples of people who were still managing okay and being enabled to live in and access community settings. This was often supported with the help of a sibling and/or a support worker.
Malcolm was one person whose both parents had passed away. He lived in a flat by himself and had a sister who came in every Friday to help with washing clothes and to prepare some meals for the week. Malcolm had gained the confidence to manage his flat by doing life skills courses and taking part in self-advocacy groups. One local authority commissioner said that it was so important to offer support to these people who were trying to manage a flat by themselves.
A key part of planning is finding friends that can offer support and help. These could be other people who require support, a citizen advocate (a person who volunteers to speak up for and support another person), family, friends, a personal assistant, support worker, or volunteer. Everyone needs some practical support and ideas for how to do the things we want to do, as well as friendship.
When day centres close, finding friends who can offer support is even more important because losing day centres can mean losing networks and support. Sadly, some of the people we spoke to in our research had few opportunities to meet up with friends, especially in the evenings or at weekends. One person said it was because everyone in his building had their own support budget and support worker so that they never did anything together as a group. The support was only provided to cover some basic weekly tasks such as meal planning and personal care, rather than to support a person to spend time with others. Spending time with others is one of the most fundamental of our needs.
However there are often friendship groups out there that offer support to meet up for social events. These can help people to make friends and build relationships. We spoke to a variety of neighbourhood friendship and dating groups. One manager talked about what they did:
"We sometimes get confused for being a social club which frustrates the hell out of me because that's absolutely not what we are. There's much more depth to what we do than that. It's a means to an end. Having the opportunity to lend your skills to someone else, can/will absolutely have an impact on your confidence and self-esteem. And if you are feeling confident and your self-esteem is high then the likelihood is that some of the practical tasks almost feel easier". (Jeff, manager, Good Neighbours)
This shows the importance of peer support - people in similar circumstances sharing their experiences, solving problems, and building connections together. We found lots of examples of peer support:
"I recently noticed once you do something new, someone else will be watching you and they'll be thinking, oh, I might like to do that. So, you're influencing others as much as you're building up on yourself" (Elaine, LS Self Advocacy Group)
"I sometimes help people at Go Sure that require more support" (Dennis)
Many organisations we spoke to are trying to help people to support each other, through creating activities that get people together in community settings. Part of what they offer is the chance to meet up in safe spaces, simply places to 'be'. This can be important to build confidence and self-esteem.
"...in addition to the social side of it, we also provide workshops, informal workshops on relationships, what to say after hello..."(Lisa, Friendship and Dating Club)
"People are doing things themselves, and they're saying right, I met somebody at some of the workshops and we now get in touch, and we socialise, you know, out with [disability rights org.]. And it's always really nice when we hear about people [who have] developed quite long-lasting networks of peer support and friendship that maybe [our organisation] was the spark for it. And coming along and doing things with [people at our organisation who] you wouldn't have otherwise met. So that's really where the peer support side of it comes in." (Greg, Disability Rights Org.)
When people were able to connect up it was often because people in the community took on particular support roles like offering a lift or giving encouragement to go out.
Some people said that it is important to ask a social worker or service provider what opportunities there are to make and meet friends in the community. One advocate suggested care providers and local authorities need to think of ways to develop people's skills and confidence to meet up outside their organisations. When people were making choices, for example to leave a day centre activity they had been attending for a long time, support to think about and make these decisions was important.
What learning is involved?
To plan ways to find support, people with learning disabilities needed to learn how to find out about what support was available and how to access it. They learned how to make contact, to keep in touch, and ways to arrange to do things together. This included skills like texting or using Facebook or WhatsApp. They sometimes learned these things from each other, but often people in organisations helped to get the learning started and keep it happening.
What more can be done?
Local authorities could ensure people with learning disabilities have access to peer-support opportunities, such as a friendship group or community circle. This is especially important in areas that have closed day centres. This could be commissioned directly through a grant or agreeing to part-fund with a Big Lottery bid. As our resource for organisations that support people shows, local charities find it difficult to fund their activities and to reach out to new members. Many examples exist such as People First organisations that facilitate peer support.
Social workers could also encourage more people to use their personal budgets to attend group activities.
