The Timms Review asked for the voices of disabled people. Here’s what we told them.
The Government is currently reviewing Personal Independence Payment – the benefit that helps cover the extra costs of living with a disability. The review, led by Sir Stephen Timms, is gathering evidence from disabled people and the organisations that represent them, and UP has submitted our response.
Our submission is built on the experiences of adults with cerebral palsy who took part in a community survey and focus group earlier this year. What they shared was powerful, honest, and sometimes painful – and it deserved to be heard.
What we told them
PIP, for adults with CP, is not a top-up or a bonus. It is the thing that makes work possible, that pays for the physiotherapy the NHS no longer provides, that funds the transport, the equipment, the personal assistance that allows people to live full lives. When it is reduced or removed, the consequences are serious – and our community told us so in their own words.
We also told the government about the assessment process itself, which the majority of those who have been through it described as distressing, poorly informed, and sometimes hostile. Assessors who don’t understand cerebral palsy. A points system that cannot capture the reality of a fluctuating, lifelong condition. A culture in which being active – working, socialising, trying – is used as evidence that you need less support, when the opposite is true.
And we raised something that is rarely spoken about: the stigma. Most of the adults with CP who contributed to our submission don’t talk openly about receiving PIP. They are afraid of being judged. That fear is not incidental – it affects whether people apply in the first place, and it is a consequence of years of public messaging that has made disability benefits feel like something to be ashamed of.
What we’re calling for
Our submission includes nine recommendations. The most important are: removing mandatory reassessment for a lifelong condition; reforming the assessment so it reflects the reality of CP; ensuring PIP remains accessible to people in work; and – before anything else – fixing the NHS gap that forces so many adults with CP to use their PIP to fund clinical care they should be receiving as a matter of course.
We also argue that PIP should not become the single gateway to other disability benefits until the assessment itself is fit for purpose. Widening the power of a broken system does not fix it.
Emma Livingstone, UP co-founder, said:
“The adults with CP who shared their experiences for this submission were not asking for special treatment. They were asking for a system that understands their lives. PIP, at its best, is what allows our community to work, to stay well, and to participate in society. Our job was to make sure the people reviewing that system heard what it actually means – and what is at stake if it is weakened.”
If you have questions or want to get involved in UP’s advocacy work, please email advocate@upmovement.org.uk