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Research

Self-building a life and a community

If people are to construct their lives successfully, advocacy, friendship groups and pursuing
interests are critical, writes Andrew Power. Research offers the key building blocks for
commissioners and support organisations to create the right conditions for this

hen we hear the words
“self-build”, we tend to think Reclaiming social care: adults with learning disabilities seizing
Wabout programmes such as opportunities in the shift from day services to community lives
Grand Designs and The Restoration Man.
Self-build is an approach to building a Aims: The aim was to find out about how people with learning disabilities are
home where people take on more control experiencing changes in the provision of day support as more responsibility is
and have more of a say over the design, being handed to them, as well as the learning that is involved and how support
build and furnishing of their homes. The organisations are adapting to these changes.
popularity of these programmes suggests Methods: We focused on four areas, two in England and two in Scotland
this is an aspiration many people share. (one urban and one rural in each). We talked with 50 people with learning
What would it look like and feel like if disabilities about their experiences across the four areas, using interviews, focus
we applied the same principles of having groups, activities and spending time with them. We also interviewed staff at
a say, making our own choices and taking 29 organisations providing support and activities.
control to our daily lives? Read the report: http://selfbuildingourlives.org/
For many people with learning
disabilities, this sadly continues to be a far
distant reality because of many obstacles, of support and learn to live in their Self-advocacy groups were key to giving
including low aspirations. When people communities within this context is a key for people the confidence and the abilities to
are not given enough support, they can be commissioners, organisations and families. express themselves, make decisions and
left isolated or without access to activities Researchers Andrew Power and Melanie take part in discussions about their lives.
of their choosing. Nind at the University of Southampton
By self-build, we do not mean people and Ed Hall from the University of Dundee, “From having that new kind of safety
should do it all by themselves. Instead, supported by the Economic and Social net of a group of friends, they become
we mean people having more of a say Research Council, developed a research more confident and then, ultimately, they
in building their local networks, activities project to look at this issue. People with become more independent in their own
and identities, which can be with the learning disabilities were involved in the lives.” Andrew, Good Neighbours (a
help of family, friends, advocates and co-production of the research design and voluntary organisation in Hampshire)
support organisations. easy-read research findings.
Personalisation has gone some way to Unfortunately, the advocacy
making this a reality for some people with Findings organisations we spoke to were struggling
learning disabilities over the past decade. We found three key stages of self-building to maintain their self-advocacy groups.
There has been a decline in the use and a life in the community. To begin with, as Second, a person needs to manage
availability of council-run day services and with any self-build project, the essentials day-to-day responsibilities as they
a greater recognition of the need for more must be planned. Finding out information become more independent at home and
community-led initiatives. Against this and staying up to date are central to this. out in the community. This involves
backdrop, social care budgets have been We saw that making this happen can be acquiring and putting into practice a range
shrinking and eligibility criteria tightening. tricky without first enabling people to of life skills and ensuring they stay safe,
Understanding how people can be build up their confidence and skills to get for example while learning to travel by
enabled to self-build their own networks their voice heard. bus independently.
Again, self-advocacy groups were crucial
in giving people the confidence to do this.
Malcolm, who regularly attended one,
showed a strong awareness of these issues.

“If I’m walking back through the
park, I sort of keep my distance from
groups.” Malcolm

Finally, self-building a life is only
worthwhile if it enables people to find
meaningful things to do, such as spending
time with friends and getting involved in
the community. Some people we spoke to
Table talk: building friendships with peers increases confidence had few opportunities to meet up with
24 Vol 33 No 3 | Spring 2020 Community Living www.cl-initiatives.co.uk