What’s the yearly cost of my disability? An estimated £8,134.88
It was a few years ago when I first totted up exactly what my disability cost each year and, with cuts to Personal Independence Payments (PIP) and other benefits in the news, I feel compelled to share the numbers.
Before I delve into the figures, I want to make clear I am writing about these costs from a position of privilege. I’ve been disabled for more than a decade and for the vast majority of this time I’ve been able to afford the additional spending. There have been times when I’ve gone without things like regular holidays and, particularly in the immediate aftermath of my diagnosis with a rare condition, there were occasions when floods of health-related bills meant I had to box clever to get my financial goals back on track. I have also lost out on work and opportunities due to other people’s misconceptions about sight loss. While it’s hard to quantify the exact cost of these experiences, they undoubtedly come with a financial and an emotional price tag attached.
However, these tough moments in my life have been fairly transient. I am on a solid footing financially largely due to spending several years in a steady and well-paid job, and I want to be very clear that I recognise this is a huge privilege. Sadly, not everyone is as fortunate.
What you ‘get’
Now, onto the numbers. Most people think that when you become disabled you automatically get some form of government or societal support. You don’t. I don’t receive PIP or any other disability benefit because I don’t qualify for them.
PIP is awarded based on the impact a disability (or a chronic physical or mental health condition) has on your daily life. It is meant to help cover the additional costs of disability. The benefit is not means tested and it is not awarded based on the costs that a claimant might face.
To receive PIP, you must answer a static set of questions that relate to the benefit’s two components (daily living and mobility). These questions are not based on your specific disability or health condition, and you receive a score based on your responses. You must score a minimum of eight points to get a standard PIP award for the daily living component and at least 12 to obtain an enhanced award. The same method applies to the mobility portion. While it is possible for people who are blind to qualify for PIP, entitlement comes down to impact and, given that I still have a lot of useful vision left and can exist very independently, I fall well short with a score of about four.
What I am eligible for is a £3,070 Blind Person’s Allowance (an amount HMRC adds to your yearly tax-free Personal Allowance), a free eye test, 50% off my tv licence fee (for a telly I can’t see), a free bus pass (even though I can’t see bus numbers or destinations, so I, like many blind people, don’t take the bus) and a Disabled Persons’ Railcard that gives me a 1/3 off of train fares, provided I pay £56 to get the card.
Costs of >£8,000
While I am grateful for these concessions, they don’t come close to compensating for the typical £8,134.88 in extra costs that people who are blind and of working age face on an annual basis.
Researchers at Loughborough University looked into this issue in 2024. They estimated additional costs shouldered by people who are sight impaired had risen by 30% since 2016.
In monetary terms, the team from the university’s Centre for Research in Social Policy, worked out that as of last year, being visually impaired added an additional £65.2o to a minimum budget – the cost of achieving a minimum standard of living – and for those who are severely sight impaired – which means blind – the weekly cost increased to £156.44. That’s an extra £625.75 a month or £8,134.88 on top of other costs, if you’re single and of working age.
It’s like paying for a second mortgage
Loughborough’s researchers, who were commissioned by charity the RNIB, based their analysis on a basket of goods and services typically purchased by people who are visually impaired. The basket was last assessed in 2016 and, as the team rightly pointed out in their report, the world has moved on significantly since then.
My ‘blind person’ shopping basket includes paying for lots of taxis because I can’t drive, train tickets, various assistive technology devices and computer software, and paying for help at home with tasks that I can’t safely perform since losing some sight. These tasks include DIY and gardening. I also have medication, various supplements and therapy bills and these run into the hundreds every month. An ‘expensive’ month – one that includes a trip to a London eye hospital for monitoring – can push the overall cost of my disability to more than £1,000 a month. Over a lifetime – or even just a couple of decades – meeting the cost of disability can, to me, feel a bit like paying off a second mortgage, and that’s before factoring blindness into other big financial expenses such as planning for retirement and meeting the cost of care in later life.
All this being said, I am one of the lucky ones. Until recently I had a healthy, regular income that enabled me to save, to live comfortably and to meet my expenses. The proposed cuts to PIP and other benefits – the largest on record and expected to yield £5 billion a year in “savings” - will devastate those who are less fortunate. They will push many into poverty.
Be an ally by taking action
I hope that by sharing some detail about the costs that people who are blind can face offers some insight to those without lived experience and helps to and articulate why the possibility of benefit cuts is so frightening and degrading. Under the new rules, PIP claimants will still need to score at least 8 points in the assessment. But they'll need to score 4 points in a single daily living activity, which is a high threshold to clear. The change could lead to at least 800,000 people losing the PIP daily living component, according to charity Scope, and the cost of disability that these people face will not disappear, even if their benefits entitlement does.
There are other changes to be aware of that stand to be just as punitive. These include:
Freezing the health element of Universal Credit (UC): The UC health element (LCWRA) will be frozen for existing claimants until 2029/30. Rather than increased in line with inflation. For new claimants, the support will be reduced to £50 a week from next year. This constitutes a real term cut for disabled people for the next 5 years.
Ditching the Work Capability Assessment (WCA): The plan is to scrap the WCA in 2028 in favour of introducing the new, tougher PIP assessment.
Support stripped from disabled young people: Disabled young people will be able to get Disability Living Allowance (DLA) until they’re 18 years old. But they will not be eligible for the health element of UC until they’re 22 years old.
The benefit reforms are not inevitable and there are actions that you can take if you disagree with them. You can raise your concerns about the government’s proposals by writing to your MP and by signing petitions. Be an ally to people who are disabled by taking at least one of these steps.