Brandon Trust’s 20th anniversary report, Finding Freedom, launched at the Learning Disability Today London conference on November 27, warns that the vast majority of people with learning disabilities remain invisible in our society despite more than 20 years of ‘care in the community.’
New research commissioned by the charity found that 54% of people don’t know anyone with learning disabilities. This is despite an estimated 1.5 million people with learning disabilities living with their families, in private rented housing, social housing or supported housing schemes across the UK. Of those who do know someone with a learning disability, just a quarter said they would describe that person as a friend.
Brandon Trust says action has to be taken to change this, not only to improve the lives of people with learning disabilities but also to reduce the reliance on paid for care, an increasingly pressing issue when faced with a social care budget crisis.
In addition, 64% of people surveyed felt people with learning disabilities are not visible in their community and 91% believed people with learning disabilities should be given greater opportunities to build relationships in their community.
Brandon Trust’s chief executive, Lucy Hurst-Brown, said: “Our research confirms what we are often afraid to admit – that people with learning disabilities are invisible in our society. But when people with learning disabilities not only live in a community but are truly connected to it, through their interests, friendships and by building their independence, the results are extraordinary.
“Take Jade, who two years ago spent most of her time alone in her room in a supported housing scheme and described herself as ‘down all the time.’ She now enjoys a packed social diary that includes everything from singing in a community choir to eating out with friends in town. She takes the bus on her own, which she thought she could never do, and has even developed a love of tree climbing thanks to a new volunteering role.
“But her experience is the exception, not the rule. Scratch under the surface of “care in the community” and the reality for most people with a learning disability - despite the fact they live in a town, village or city - is “care without the community”. Instead of encouraging independence and social or economic integration, support often simply perpetuates an individual’s dependence on health or social care organisations.
“Paid for care cannot replace friendships or real community connections. People with learning disabilities need relationships, hobbies, jobs and education. Care providers have to be braver in order to facilitate this. Commissioners too need to be less risk averse and to recognise the merits of supporting people to do the things they can do, increasing their independence and ultimately reducing their need for paid for support.
“In a world where we face a crisis of rising social care costs, integration is the key not only to a better life for people with learning disabilities but to reducing the burden on the taxpayer to provide care.”
Brandon Trust’s report makes a number of recommendations, including advocating that support providers and the social care sector becomes less risk averse and relinquish control of their traditional role as care givers and act instead as community connectors.
But the report accepts that his is a cultural issue with the care sector, adding that leaders need to set the tone, alter their organisation’s ethos and reassure their workforce about the benefits of change.
At a commissioning level, the report argues, support should be allocated according to what people can do, rather than what they can’t. Health and social care organisations that commission providers for support are also risk-averse, as numerous guidelines and research point out. Many commissioners, historically used to bulk buying support services, find it difficult to purchase flexible, responsive services based on individual need.
The focus should be on what people with learning disabilities can offer, rather than what they need. This ‘asset-based approach’, as opposed to a ‘deficiency model’ is more cost-effective since supporting people to become more connected in their community ultimately reduces the need for paid support. Success therefore should be judged on how much less help – and funding – people with learning disabilities need.
"Our vision over the next two decades is to encourage individuals to be more independent and resilient in local areas, so they receive less paid-for support,” added Hurst-Brown.
“While there are those who will always need some (at times even significant) support, the measure of success at Brandon Trust is how far staff become invisible, while those they support become more visible.
“Freedom from institutional living was the force for change in the early days of Brandon Trust, Today freedom remains our prevailing driver.”