Want to improve lives for people with learning disabilities? Listen to them

http://www.theguardian.com/society/2014/nov/25/learning-disability-support-alliance

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More than 90 organisations including self-advocacy and family-led groups and some 1,200 individuals have launched the Learning Disability Alliance England (LDA). The Alliance aims to raise awareness of issues such as the impact of austerity cuts and rising disability hate crime, as well as the problem of people with learning disabilities being stuck in treatment units and excluded from shaping the policies or services directed at them.

Gary Bourlet, who has a mild learning disability, is unequivocal in his assessment of what needs to happen if the UK is to ensure that people with learning disabilities are wholly integrated into society and that mistreatment both inside and outside institutions is to cease.

“This has got to be about human rights, about civil rights,” says Bourlet. “We’ve got to get to a situation like the suffragettes or the civil rights movement of the 1960s. There has been some progress over the decades but we are still far behind other disabilities. It’s important that we get our voices out there about policies.”

Bourlet co-founded self-advocacy campaign People First England earlier this year, with disability campaigner Kaliya Franklin. He says LDA places the voices and views of people with learning disabilities at the centre of a new rights-based movement.

In the run up to the next general election the LDA will audit government policies and pledges to spotlight where the rights of people with learning disabilities have been neglected. It will also monitor parties’ manifestos to assess which appears most likely to have a positive impact if elected.

According to Simon Duffy, director of the Centre for Welfare Reform, who is helping coordinate LDA England, the catalyst for action has been that “things are now going backwards”. He says that a platform for “resistance”, which has people who have learning disabilities right at the centre, is essential. “It will not be professionals or families who have the last word – but people themselves,” he says.

Enduring social exclusion, isolation and high levels of poverty, coupled with a slew of policies and austerity cuts have disproportionately affected people with learning difficulties, says Duffy. It means that those with severe disabilities are facing cuts six times greater than the average citizen.

LDA is one of a number of campaigning disability groups to have emerged in recent years. Others include the Spartacus Network and the Justice for LB campaign, but this new alliance is regarded as an additional chance to stand up for people’s human rights.

The ongoing struggles around quality of life are set to be a key aspect of an annual conference on learning disability on Thursday, where a new report by the Brandon Trust provides a state-of-the-nation-style assessment of the past 20 years for people with learning disabilities. The trust was set up two decades ago to assist the transition from a system based on institutionalised care to community-based living. Although it describes the benefits of that shift, it concludes that while much progress has been made, thousands of individuals still remain in institutions and even those who have moved out of residential care have been left isolated and “invisible”.

A common experience is “care without the community”, says the trust. Some 64% of people it surveyed about attitudes around learning disability said people with learning disabilities were not visible in communities while 91% felt that more needed to be done to help individuals to build relationships within their neighbourhoods.

The trust’s chief executive, Lucy Hurst-Brown, says part of the problem is that despite the closure of most institutions and even with the success of self-advocacy over the years, approaches to supporting people with a learning disability who need some help continue to be “paternalistic”. Hurst-Brown says the report, Finding Freedom, illustrates how much more could be done to make sure commissioners of services prioritise helping individuals to integrate into their communities. “There is a disincentive on how services are commissioned,” she suggests.

Hurst-Brown says there is a problem with the practice of allocating resources based on “assessed needs” – what an individual needs most support with, for example managing money – rather than a person’s potential to contribute to society. Sometimes practical steps, such as helping people to take part in local leisure activities, can open up opportunities for valuable community relationships, she adds.

There is “a real tipping point” right now around questioning how people are supported but also in terms of challenging the abuse and isolation so many face in wider society, Hurst-Brown concludes. She says: “We could and should have come a lot further in the past 20 years. It’s about providing the right support. But a lot of this requires a quantum shift in public perceptions.”