People with learning disabilities build their own support amid cuts

A recent report by Mencap has revealed that due to cuts to day centres, nearly a third of local authorities have closed day services to adults with learning disabilities in the last three years. This has resulted in 1 in 4 of these adults now being stuck at home. While not a panacea, day centres were important sites for meeting friends and learning new things, albeit in often restrictive, inflexible settings.

Local authorities cite the use of personal budgets as an alternative. Whilst personalization offers the promise of more choice and control and wider participation in the community, the reality in the United Kingdom has been that these budgets are being continually hampered by local council cuts.

What is filling this gap in people’s opportunities for meeting others and does peer-advocacy have a role to play? Peer-advocacy refers to groups of people in a similar situation, who need support, that come together and advocate for each other. A recent study that we undertook at University of Southampton sought to find out about how people with learning disabilities are getting together to build their own support networks amid day service cuts.

Our study found that there were a small range of local peer-advocacy groups around the Southampton urban region where the study took place. These groups occurred within ordinary places in the community (e.g. a local pub and a community centre) and typically involved 15-20 people with learning disabilities. They were facilitated by a paid advocacy worker but the advocates had active roles in ‘self-building’ the content and format of the meetings.

The peer-advocacy groups provided an opportunity to meet other people, defined by one lady as ‘someone that you’re comfortable with’ (Caroline). This was an important finding, as many in the group admitted experiencing loneliness and isolation. The assumption of having friends was questioned by one participant, who revealed ‘I haven’t got any friends!’ (Henry). This point was further reinforced by Henry who said that he tried to remain active with going to groups, otherwise, ‘if you don’t, you get sort of lonely, sad and depressed’.

Another important aspect of peer-advocacy groups was that they offer participants opportunities for wider informal learning of information needed to get by safely in the community. In the absence of other opportunities for learning, these opportunities hold particular relevance for those who often have to face marginalisation in their communities.

Peer-Support in Demand but vulnerable to Decline
The study reveals how some (not all) people with learning disabilities are coping with changes and cuts, by gathering together for solidarity, support and friendship and building informal networks of support.

We recognise that peer-advocacy groups, meeting once a week, are insufficient to compensate for the loneliness and lack of purposeful activity that many participants described. Nonetheless, having a point in the week that offers a ‘ray of sunshine’ (Mike) in an otherwise solitary week can offer an important anchor point in their lives.

Despite the potential for peer-advocacy, these groups I would argue are very precarious within the wider context of austerity and limited social care funding and are unlikely to be sustainable in the future without more government support. Peer-support also occupies a very ambiguous position in policy. It is not mentioned directly in the Care Act 2014. However, local authority support for preventative initiatives that reduce the need for care services are. Therefore more recognition of these networks needs to be made by commissioners, rather than seeing them as low-lying fruit for soft cuts as evidenced elsewhere. If left to continue to decline, these groups will likely disappear just like their formal day service counterparts, pushing people with learning disabilities arguably into greater risk of being vulnerable to isolation and loneliness.

The study gives a small snapshot of the potential of these groups. What is needed is a larger national study of the size, scale, and scope of these local networks in order to properly gauge their sustainability and to inform realistic debate over their future within the social care landscape. To help us in this regard, we have established a disability platform called SPIRIT. It stands for Southampton Platform for Inclusive Research and ideas Together and brings researchers from University of Southampton and disabled persons’ groups together from across the South Coast. Our mission is to reach out and inform social care scholars and the groups who arguably need to hear about this area of research most – commissioners, service providers and people with learning disabilities.

For further details of this research study, we are organising a one-day conference on 25 May 2016 in Southampton and will be showcasing the presentations at the event on our disability platform website: https://spiritdisabilityplatform.wordpress.com/

This content was written by Dr Andrew Power, Human Geographer within Geography and Environment at the University of Southampton, and originally published on The Huffington Post:  http://www.huffingtonpost.co.uk/andrew-power/people-with-learning-disa_b_10114762.html
You can also find Dr Power on Twitter | @power_geog