Invisible citizens: UK charity calls for action to help people with learning disabilities integrate into the community

Learning disability charity Brandon Trust is this week calling on the government and social care sector to do more to help people with learning disabilities build connections in their communities.

The charity’s 20^th anniversary report, Finding Freedom, launched at Learning Disability Today London on Thursday 27 November, 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[1] commissioned by the charity reveals that 54% of people don’t know anyone with learning disabilities. Of those who do know someone with a learning disability (46%), just a quarter said they would describe that person as a friend.

Action has to be taken to change this, according to Brandon Trust, 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.

This is backed up by the fact that 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 new report Finding Freedom demonstrates how community connections can transform the lives of people with learning disabilities through the stories of three individuals the charity supports. (see CASE STUDIES section below). It also outlines practical recommendations for the sector and policy makers to deliver greater integration.

Launching the report at the Learning Disability Today conference in London, Brandon Trust 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.”

The new national survey commissioned by Brandon Trust and published in their 20^th anniversary report Finding Freedom shows:

·         Over half the population (54%) don’t know anyone with a learning disability. That’s despite an estimated 1.5 million people with learning disabilities living with their families, in private rented housing, social housing or small supported housing schemes across the UK.

·         64% felt people with learning disabilities were not visible in their community and 91% believed they should be given greater opportunity to build relationships with people in the wider community.

·         Of those who do know one or more people with learning disabilities (46%) the most common reason was as a neighbour, rather than as a friend.

·         25% of those who know someone with a learning disability see them less than once a year.

Recommendations outlined in the report include support providers and the social care sector becoming less risk averse, relinquishing control of their traditional role as care givers and acting instead as community connectors.

This is a cultural issue with the care sector. It demands leaders set the tone, alter their organisation’s ethos and reassure their workforce about the benefits of change. Risk is not a reason to deny people choice and freedom.

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[2]. 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.

Lastly, Government needs to do more to champion the social care workforce, promoting recruitment, retention and leadership in social care as it has done with the education sector.

Lucy Hurst-Brown adds:

“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.

“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.”

CASE STUDIES – see full report (below) for full versions

Jade Ward, 21, from Trowbridge, Wiltshire has gone from being quiet, shy and unhappy – regularly withdrawing to her bedroom, to becoming a confident, outgoing young woman with a packed social life. Her weekly activities include a community choir, meals out with friends, karaoke nights in a local pub and she has even developed a penchant from climbing trees, thanks to a recent volunteering role.

Next, Jade hopes to get a job. Now that she feels part of her community, she says, she wants to contribute more to it.

***

Phil Burt, 54, from Newquay, Cornwall, has autism and a mild learning disability. After years in residential care he now has his own flat, his own car and enjoys the enviable status as a preferred regular in his local pub. He gets out and about in his local community, driven by his support worker but in his own car – his most treasured possession.

His support worker Gareth says the car “represents a lot more than just a set of wheels – it is Phil’s independence.”  Phil cleans the car – by hand, on his own, as he emphasises: “I do it myself”.

Phil’s life has been transformed in the three years since he moved into his own housing association flat, with one-to-one support from Brandon Trust, after years in residential care. For Phil’s proud father, Doug, the contrast is clear, “he’s living the life he wants to live now, there’s no question about that.”

***

There is no such thing as simply popping out to the shops for Barbara Martin, 60, from Launceston, Cornwall. A quick errand-run will turn into a series of chats and catch-ups with the many people she knows in her community, either neighbours in her block of flats or friends from the Oxfam store where she volunteers.

Barbara, who has a mild learning disability and a hearing impairment, lived in different NHS long stay hospitals and care homes for 25 years. The pensioner says: “They treated me like a baby and I did not like that.”

Brandon Trust began supporting her in 2007, by which time Barbara had moved from group living into her own council flat. Staff have worked with Barbara to build her longed-for independence and to help her do more for herself. The initial support, which included staff staying overnight, reduced over time and now totals around 10 hours a day. Now, says her support worker Penny, “by the time we get here, Barbara is up and dressed, has had her medication, and is ready for the day.”

To download the full report Finding Freedom, the survey results and high res images please click here or go to www.brandontrust.org