“I already have a job… getting through the day”

Our latest policy report on ELCI, employment and social security

The ‘I already have a job…’ report, by Catherine Hale (CII), Stef Benstead (CII), Dr Kate Hardy (Leeds University Business School) and Dr Jo Ingold (Deakin University), sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs).

Although one-in-three disabled people of working age experiences problems with stamina, breathing or fatigue, the report says that their needs are not reflected in the workplace, in legislation, or by disability assessments like the Work Capability Assessment (WCA).

Despite ELCIs affecting almost 5 million adults in the UK, these people are hidden within disability-related policies because their lived experiences of illness and impairment is widely misunderstood, often discredited, denied and disbelieved.

Lack of knowledge about ELCIs and how reasonable adjustments should work, make it impossible for people with these conditions do paid work. The rapid move to home working during the pandemic shows that such change is possible. It is imperative that employers continue such beneficial practices.

People with ELCI who are unable to work, or can’t work full-time, face further barriers because of the way all benefits assessments are designed and carried out. Within an already punitive system, there is no way to factor in the unpredictability of conditions like, ME/CFS, Ehlers Danlos Syndrome, Multiple Sclerosis, Long Covid and numerous other ELCIs.

The report’s recommendations include:

• Government departments and agencies should recognise people with ELCI as a discrete sub-group of disabled people

• Employers must recognise they are legally required to make reasonable adjustments under disability discrimination legislation – particularly around flexible working – and include ELCI in disability awareness training

• The government and employers should support organisations and work ‘brokers’ who can match specific employment roles and arrangements with particular individuals with ELCI

• The government should adopt a targeted approach to employment policy and support for people with ELCI, discarding the ‘one-size-fits-all’ approach which fails both individuals and employers

• More funding for the Access to Work scheme to cover a greater range of aids, adaptations and assistance

• Assessment scoring for employment-related benefits should allow for the variation in hours that people with ELCI can work; and train assessors in their needs and capabilities

• Increased funding for social care so that people with ELCI can conserve energy for paid work by having more support with household tasks

• The impact of ‘Long Covid’ on those who have become ill during the pandemic highlights the importance of getting services right for people with ELCI.

Click here to download a PDF of the report.

Read the short briefing paper

You can watch our report launch event, hosted by the Centre for Welfare Reform, on YouTube.

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