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"there’s a fine line between safe and segregated"

Balancing risk and independence is a fundamental part of social care and support delivery. Given the emphasis in policy towards connecting with the wider community and using community assets, this can mean support organisations have to work in different ways.

The learning disability support organisations we spoke to were all very aware of the challenges of balancing risk and independence for their members.

The various friendship and community-focused groups we spoke to were very keen to emphasise that they sought ways of using venues in the community for their group meet ups. These included local bars, coffee shops, garden centres, parks and other public amenities.

Although there has been a significant policy emphasis on inclusion with the wider community, we found that there is still a need for the provision of safe spaces where groups of adults with learning disabilities can meet.

This is partly about the lack of wider public acceptance of those deemed to be different or with different forms of communication. It is also about the low expectations more widely that have curtailed disabled people’s confidence and communication skills.

One manager of a local initiative that supported people to look after and plant their local garden park had this to say:

"The Grow group which we facilitate is in a public park. It’s mothers or grandmothers with their children playing, while our guys are outside in the garden doing their work. It’s a public park which brings its own challenges but it’s really good not to have a segregated and a separate service. It’s a tricky one, you know, we’ve come across lots of projects like that where there’s a fine line between safe and segregated." (Alice, The Right Deal)

Most of the day service support sector is not regulated by the Care Quality Commission. Some commissioners we spoke to found this problematic and were keen to address this. However, in our research, we found that the organisations’ managers had a healthy and well-informed attitude towards balancing risk and independence. Indeed, some of the managers of these organisations deemed their larger learning disability service counterparts as being very risk averse, arguing that they have compromised people’s freedom to take part in community life.

This proactive attitude to risk was demonstrated in the awareness of most people with learning disabilities we spoke to of safety in the home, and community safety. When asked, they said that they got a lot of information through their local self-advocacy group. The police often came to speak to these groups. Through this learning, many shared their personal stories about ways that they tried to keep safe. When asked if it is better to keep to yourself, one self-advocate had this to say:

"No, I wouldn't say so much if you've got a dog. But sometimes, I feel with some people I probably would but it’s just you don't know what's going to happen to you, you've just got to be a bit more extra aware. Somebody could take advantage of you and you wouldn't even know sort of thing." (Malcolm)

One self-directed support organisation we spoke to said that addressing and easing parents’ concerns about the safety of their child is very important. Otherwise, parents can become fearful about their child accessing the community when they grow older.

"It’s the risk as well isn’t it, I mean it’s the usual, parents don’t want their children exposed to risk, but children as they grow up are always exposed to risk through their developmental stages and I think if you have a child with a learning disabilities or who has a health issue, who you’ve been hugely involved in keeping them safe all those years and they become a teenager and they want to go to the pub or go out with their friends, it all becomes a little bit scary." (Anya, Transform Self-Directed Support)

We know from other research that parents’ concerns are also fuelled by the low expectations of professionals and teachers, about what a person can do. In one of the local authorities, a commissioner spoke of the progressive parent and carer forum that was based in their area. This forum was deemed to be very important to share learning and foster higher expectations amongst parents.

A key part of feeling safe in the community was knowing that there was a supportive group of friends, peers and advocates around – what one organisation called ‘a safety-net’ to give people confidence and to become more independent in their lives.

For one organisation, the balance between risk and independence was a factor in what was deemed appropriate for accommodation. Whilst supporting people to learn new skills, and be as independent in their daily lives as possible, they said that for some ‘they may never move on’ and live their own flat, and ‘safety wise they need to live in a service [supported accommodation]’ (Care provider).

What learning is involved?

Learning about balancing risk and independence was largely through trial and error. Exposure to good examples of getting this right helped to boost confidence.

What more can be done?

It is challenging for local authorities to balance risk and independence in the choices and opportunities (including use of self-directed support) provided for people with learning disabilities, because of underlying concerns about adult protection. This is completely understandable, but can constrain creative responses to support social and other meaningful activities.

Local authorities could work more closely with parents and carers about managing risk. This may be through commissioning an organisation to provide training about managing community safety or supporting a parent and carer forum.

Self-advocacy organisations already provide a lot of support and advice about managing community safety. Friendship groups also work with people with learning disabilities and advocates to establish social and peer networks, including people and groups in the local community. These activities can reduce fear and risk and enhance feelings of safety. Local authorities could recognise and financially support these activities and promote them more widely.