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.
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CII were recently invited to give evidence to the House of Commons Work and Pensions Committee. This is the first time that evidence has been specifically sought from people living with energy limiting chronic illness – ELCI.
You can watch our Director, Catherine Hale giving evidence on YouTube.
Catherine’s speech begins approximately 1 hour and 7 minutes into the recording.
Sarah Campbell asks whether chronic illness needs its own set of responses to social security, employment and social care.
I have a combination of both a chronic illness and a progressive muscle condition, offering me insight into both “worlds” of invisible fluctuating illness and visible physical impairment. Some issues are extremely different while others are shared. But so far I’ve found that accessing support is often biased toward purely “traditional” physical impairments.
As a wheelchair user, there are many access barriers ranging from getting an adequate wheelchair in the first place, to housing, transport, social care etc. But the law is generally on our side, precisely because disabled people fought for those rights over the past decades.
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Catherine Hale considers how half a lifetime of chronic illness has changed her understanding of the term ‘disabled’.
I’ve been sick for nearly 30 years. That’s the whole of my adult life. I always thought of myself as ‘disabled’ in the sense of being very incapacitated. During my bedbound phase I couldn’t wash, feed myself, go to the toilet or write my own name; nor could I read, watch TV or have a conversation.
But I never thought of myself as ‘disabled’ in the political sense used by the disabled people’s movement. That is, I never thought the disadvantages I suffered in not having a job, a career, or a social life were due to an infringement of my rights. It didn’t make sense to blame my profound isolation on other people or organisations excluding me unnecessarily or treating me unfairly.
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