'Welfare reforms are being designed about us, not with us - this must change'
Welfare reform is not just about systems and services, it is about people’s lives. For Disabled people, welfare policy determines whether we can pay for basic essentials and the extra costs of disability and live with dignity, independence and security. Yet successive governments approach reform through a negative lens. A lens that sees us as burdens, as fraud risks or as ‘not trying hard enough’ to work. This harmful narrative has driven policies that punish rather than support, isolate rather
than include.
The recent savage cut to Universal Credit for Disabled people claiming from next April and proposed restricted eligibility to Personal Independence Payments (PIP) (thankfully fought off for the time being) highlight a fundamental issue – reforms are being designed about us, not with us. They are shaped by people who rarely reflect the communities they legislate for. Despite claiming to represent the whole of society, Government decision-makers do not reflect the diversity of the country, and Disabled people, in particular, remain grossly underrepresented in positions of political power and influence.
This disconnect leads to policy-making that lacks both insight and empathy. The absence of Disabled voices in designing welfare reform results in systems that are degrading, bureaucratic, unfit for purpose and sometimes life threatening and that will ultimately push us deeper into poverty and crush our spirit and talent. The ‘concessions’ on PIP recently announced are not a substitute for true coproduction and it remains to be seen whether the Timms PIP review will genuinely co-produce with Disabled people and our representative organisations.
At Disability Rights UK, we champion a different approach – one that centres Disabled people as rights-holders and experts in our own lives. If we are not involved in shaping the decisions that affect us, those decisions will continue to fail. Co-production and structured engagement are the only credible paths to effective public services and welfare reform. We do not need sympathy or surveillance. We need to be listened to, respected and involved, because reform without us is not just unjust, it is bad policy.