Given she has been the most consistent figure in British politics in the past 20 years, Louise Casey is worth listening to far more than any of the prime ministers she has worked with. And this week, she said something particularly striking. Describing how the Government classifies people as being disabled, she said: “I would qualify, and I’m sitting here right now. I’m not disabled, but I could qualify if I answered those questions based on my medical records, it’s simple as.”
Casey was referring to a survey from the Department for Work and Pensions, which asks people if they have a long-term physical or mental condition which impacts their ability to carry out day-to-day activities. That Family Resources Survey allows the Government to estimate how many people in the UK could be described as disabled, and the latest figures put that at 16.8 million people in 2023-24 – or 25 per cent of the population. That’s up nearly five per cent in 10 years.
The FRS is a self-reporting study, and is different to the criteria used for assessing disability benefits. But Casey’s point was that we need to consider what disability really means, and the extent to which government should step in. And that kind of discussion would logically lead to dramatic overhaul of the disability and sickness benefits system in this country. Because along with the FRS reporting, the number of people claiming disability benefit has increased across the board too.
Ministers are already in the middle of reviewing personal independence payment, the main benefit paid to disabled people. Unlike the question posed by the FRS, the criteria here might not have meant Casey would qualify. Contrary to popular belief, PIP is not an out-of-work sickness benefit, but a payment designed to help people with the much higher costs of living and getting around with a disability or ongoing illness.
A few weeks ago, Work and Pensions Minister Stephen Timms published his interim report of a review he is carrying out of PIP. It found that “PIP is not working’” either “for the people that go through the process, nor for a government committed to supporting disabled people”. It hasn’t made recommendations on what should change yet, or how many people the review team think should be in receipt of PIP. But the implication from both this report and Casey is that big changes are due.
Those changes can’t just be to benefit criteria. As Casey suggests, there is a wider debate here about what it means to be disabled, how much of that should be a concern of the state – and which part of the state.
Like her, I could describe myself as “disabled” on the basis of the FRS question and my medical records – but that’s not how I see my own life at all. There have been times in my life where physical conditions have meant I’ve been advised to apply for PIP’s precursor, the disability living allowance, to help me as I lived with the PTSD I was diagnosed with a decade ago. The support I’ve needed from the state hasn’t always been there though, but the failure hasn’t been in the benefits system. It’s been in the NHS, which has largely lacked the capacity to treat my mental health condition. I was able to access private treatment, but many people who continue to struggle with daily living because of treatable conditions can’t. In fact, the Timms review reported that 41 per cent of people receiving health and disability benefits are on a waiting list for treatment, and 50 per cent said their ability to work was dependent on receiving treatment.
This is a delicate argument to make around mental health and disability, and one I struggle to pin down myself as there have been times when I really have been too unwell to work, and being in the office has been inappropriate both for me and my colleagues. But at the same time, I have largely been able to manage the symptoms of my mental illness alongside and often because I have been working.
Society is clearly struggling to work out that balance too, hence the endless stories about teenagers out of work for anxiety, and the implication in that reporting that they shouldn’t be. Many of them would probably have been able to go straight from school into work had they not had years of their life disrupted by Covid, and then found that child and adolescent mental health services couldn’t treat them in anything like a timely fashion.
We have failed them, not just by suggesting that work can be optional and mental illness is automatically a reason not to even try, but also by leaving them without the right support. And we will fail them again if we focus all of our attention on a benefit eligibility list, rather than the broader messages the state and society sends them.
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