ELCI, cognitive dysfunction and disability benefits
Chronic Illness Inclusion responds to the Department of Work and Pensions’ Green Paper on Health and Disability.
Summary: disability benefit assessments must be redesigned to account for the cognitive fatigue and dysfunction that limits work and daily living with ELCI.
In October CII submitted a comprehensive response to Shaping Future Support, the government’s proposals on the future of disability benefits. We also contributed to a response by the DPO Forum, a coalition of Disabled People’s Organisations, of which CII is a member.
Both of these responses addressed key concerns with the systems for PIP and ESA (and its equivalent under Universal Credit) that affect all disabled people. We responded to proposals about advocacy support and for making the claims process less burdensome. We especially highlighted the lack of any mention of the need to alleviate poverty and destitution among disabled people who are too unwell to work or are excluded from employment through discrimination. We argue that the level of financial support for disabled people in the social security system must be urgently and substantially increased.
In our own response we also highlighted an issue that particularly affects disabled people with ELCI and other energy limiting impairments. That is the fact the assessment criteria, known as the ‘descriptors’, used by both PIP and WCA are not designed to capture and account for our lived experience of impairment and disability. This is widey known.
The problem of ‘fluctuating conditions’ and the Work Capability Assessment (WCA) was first highlighted by Professor Malcolm Harrington in 2011. Since then, changes have been made to ensure that assessors take account of whether a person can carry out an activity ‘repeatedly, reliably and safely’. But this guidance is only applied to physical activities such as walking and sitting. The descriptors for ‘mental, cognitive and intellectual’ function in the WCA, and the cognitive and intellectual activities included in PIP assessments, remain completely unfit for purpose for assessing ELCIs.
Our research demonstrated that alongside the fluctuating nature of many ELCIs, a key feature in this impairment group is cognitive fatigue and dysfunction. Problems with concentration, and short-term memory are common to many ELCIs. In a recent survey of disabled people who reported having ‘energy impairment,’ 58% said they had problems with memory, and a half noted problems with learning, understanding, or concentrating.
This is sometimes colloquially referred to as brain fog, which can sound like something everyone gets if they’ve woken up feeling a bit hazy after a rough night, for example. But with some conditions like Long Covid, fibromyalgia and ME, cognitive dysfunction and fatigue can be severely disabling, making even a five minute conversation or watching a TV programme difficult or impossible. We know from our focus group research that for people with ELCI working in desk-based jobs, cognitive dysfunction and fatigue are one of the key work-limiting features of their condition.
The crucial thing is that these difficulties are inherent to many systemic, energy-limiting physical conditions, regardless of whether the person has a comorbid mental health condition. Yet the DWP’s guidance to assessors states that the mental, cognitive and intellectual descriptors should only be applied to people with certain psychiatric diagnoses, brain injury, autism or learning disabilities. As a result, people with ELCI rarely, or never, score points for their disabling cognitive problems. Points add up to support. So people with ELCI are missing out on the support we need to survive and thrive because our lived experience of disabling cognitive dysfunction and fatigue is not recognised or is even denied.
Effectively the DWP’s guidance to assessors limits the scope of descriptors to certain diagnoses and not others. Our submission says:
This is entirely at odds with the principle of a functional assessment that looks, not at a person’s diagnosis, but at how that condition affects their function, which is the stated aim of the WCA and PIP assessment method. Restricting the application of descriptors to some diagnoses and thereby effectively excluding others is incompatible with a functional assessment.
Assessors must apply the cognitive, mental and intellectual descriptors to ELCIs where cognitive fatigue and dysfunction are key restricting factors in work capability and daily living activities, such as learning tasks, awareness of hazards, initiating and completing personal action, and coping with social engagement. With regard to PIP, assessors must consider the impact of cognitive fatigue and dysfunction on communicating verbally, engaging with other people and making budgeting decisions.
Our response also includes the recommendations that the WCA must be fundamentally redesigned to include:
1) an indicator for how many hours per week someone can work reliably and repeatedly,
2) more holistic approach to assessing activities of work or daily living, to ensure that the cumulative impact of energy impairment across the whole of our lives is understood and accounted for.
Read our full response to the DWP’s Health and Disability Green Paper here final DWP ShapingFutureSupport CIIResponse 2021