Experts by Experience: Benefit Claimants Should Design Our Social Security System

by Ellen Clifford

1 September 2020

A commission comprised entirely of those with lived experience of the benefits system has launched a draft plan to reimagine the social security system. 

The charity-funded ‘experts by experience’ commission is a ground-breaking initiative to develop an alternative to the government’s welfare reform agenda by asking those with lived experience of the benefits system how it must change.

The commission, which I co-chair, received over 1000 ideas from service users and has now put forward key proposals that will be consulted on until the end of September.

Ideas include replacing universal credit with a new guaranteed decent income (GDI) of at least £222 a week, with more for disabled people, people with children, and people who are long-term unemployed.

The commission also wants to scrap the current disability benefit, personal independence payment (PIP), in favour of a “personalised benefit” assessed based on the social model of disability and by recognising claimants as experts in how their impairments affect them.

The commission is notable for its rejection of traditional approaches to policy-development, where high-profile advocates are often listened to above those with lived experience. A case in point is another new disability commission set up recently by the Centre for Social Justice, a think tank founded by Iain Duncan Smith in 2004. Headed by former Tory politician lord Kevin Shinkwin, the commission includes former Paralympian Baroness Tanni Grey-Thompson as well as representatives from Clifford Chance and Deloitte. 

Our approach is neither gimmicky nor tokenistic. Insights formed through lived experience of benefits, work and disability are crucial to the kind of ambitious thinking that is needed to build a better social security system. Having claimants in positions of leadership directly challenges the deliberate denigration of people reliant on benefits by successive governments seeking to justify welfare cuts.

More expert than paid professionals. 

The rarity of claimant-led approaches to the thorny issue of social security policy reflects the many misperceptions and prejudices that surround the worlds of benefits and disability. Myths concerning generations of worklessness and six-figure benefit sums have been largely debunked since the early years of the coalition government, when anti-benefit claimant rhetoric was deliberately inflamed by the Tory ministers and the rightwing press. There is also now growing awareness of the real and increasing problem of in-work poverty, with over half of those living in poverty belonging to working families. Nevertheless, many people remain sceptical of the idea that benefit claimants are capable of both understanding and developing complex policy proposals.

In fact, since 2010, claimants politicised by their experiences have educated themselves in the minutiae and technical detail of the social security system, with the result that many are now more expert than the paid professionals.

Over the past two decades, social security policy has been created to serve the interests of the neoliberal political economy. This has had a terrible human cost as the needs and interests of people dependent on the system have been overlooked.

At the same time, there are many examples of how welfare reform has failed even by the Tories’ own standards. Take the replacement of disability living allowance (DLA) with personal independence payment (PIP) – this was intended to save £2bn a year but was found by the office for budgetary responsibility to have instead cost the government around £1.5bn more each year.

The user-led approach taken by the commission represents a challenge to the core attitudes towards worklessness and disability that underpin Tory welfare reform. According to the Conservative view, worklessness is a mental health problem and claimants’ own ideas about what they can do cannot be trusted; the solution is to coerce claimants into employment. Unemployment is therefore blamed on the negative ideas and behaviours of benefit claimants while overlooking material conditions such as lack of jobs, workplace discrimination, illness or impairment. There is no credible evidence to support this view.

There is now fairly overwhelming evidence to prove that the government’s attitude not only harms people but can also be counter-productive to the aims of getting people into sustainable employment, particularly those who are already disadvantaged. And yet the Tories stick with it, even bringing back conditionality and sanctions before the Covid-19 outbreak is over. 

Within neoliberal thinking, the social security system provides a tool for disciplining workers as well as the unemployed. Costs spent on the most disadvantaged are borne to avoid civil unrest, but they are something that capitalists would love to be rid of and will always do their utmost to minimise whenever they think they can get away with it. This ideology means claimants themselves are the last people the Conservative government want around the table setting policy with them – and challenging this thinking is precisely why we think claimants need to be at the heart of any decisions about the future of social security.

Ellen Clifford is a disabled activist, co-chair of the experts by experience commission and author of The War on Disabled People: Capitalism, Welfare and the Making of a Human Catastrophe.

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