Jean’s story: contending with the disability price tag
Jean has Ehlers-Danlos syndrome, which means her joints dislocate easily and she is in a lot of pain.
In this blog, she talks about the additional costs of living with a disability, and the impact of this on her life.
The term ‘poverty premium’ refers to the extra costs you have to pay just because you are poor. This could be having to have a key meter for your gas, electric and water if you live in rented accommodation as companies feel you are less reliable at paying a quarterly bill, or because you don’t have a bank account and so cannot pay by direct debit. In my case, it affects the equipment I need to be able to manage my day-to-day life as a disabled adult. Most people would assume (as I did once) that if you become disabled the NHS will provide you with whatever help you need no matter what the cost – after all, that is what we pay our National Insurance contributions for, isn’t it?
Actually it isn’t. Our contributions are not ring-fenced for our needs and, as we see time and time again on the news, the NHS and social care sector do not necessarily provide you with the most appropriate medical treatments and equipment to improve the quality of your life. The focus is, instead, on quantity of life (i.e. how many years you live), and to this end they will provide you with the most basic equipment to achieve this. That could be putting someone who is completely capable of using the toilet in nappies as it is cheaper than providing home visits from a care worker to help them to get to the toilet if they have difficulty walking. It could also be only providing manual wheelchairs to someone who is not able to push themselves due to damage to their arms, as they do not give electric wheelchairs if people can walk around inside the safety of their homes but not on the streets.
In my day-to-day life, I might not be considered within the category of ‘living in poverty’ as I have a reasonable income from the combination of my benefits and the £225ish per month I earn through a part-time position delivering disability training to staff at a local company. However, if anything were to go wrong and I was to not receive my benefits payments, I would not be able to cover both my general outgoings and the extra costs I have crop up due to my disability. These include the MOT, insurance and warranty payments for my electric wheelchair that give me the independence to leave my home without needing to be accompanied (pushed) by another person. Costs relating to my wheelchair alone were just under £380 this year and, as with a car, are expenses that have to be paid every year.
I also had to purchase my own crutches and walking frames, as the ones the NHS gave me could not be collapsed for storage. I didn’t have the room in my home to keep them or they got damaged trying to get in and out of wheelchair transport as they were too tall for the door when on the rear of my wheelchair. I am lucky to be computer-literate and have a stable internet connection, meaning I am able to shop around for end of line stock, second hand equipment or sale reductions. However, if I need something in an emergency even online shopping is not always sufficient and can end up yet more costly. For instance, when I needed a new sling as my shoulder had dislocated, I ended up paying more for the next day postage than it costs for the item itself. Even then, retailers often cannot actually guarantee the next day, or they don’t let you know that the item is out of stock when you order it. Most of the big disability equipment companies will try to help with the costs by exempting the VAT on the goods, but some people are not aware they can apply for this, and the rules for qualifying and the evidence you have to provide puts others off altogether.
The cost of food is something we all struggle with. There are websites and books out there that will tell you you can eat for £1 a day or feed a family of four for £20 per week. Unfortunately, due to my health, eating that cheaply would put me in hospital with severe gastric issues. Cheaper, processed meat and fish, made up of “meat derivatives” like skin, bones, offal and feet, last well on the shelves but lose a lot of volume in the liquid that seeps out during cooking. As a result, these meals they are not large enough for me I need to eat twice as much to get the same amount of nutritional content as a “normal” person due to my digestive issues. My food bill alone is over £100 per week and I live alone most of the time. Although I try to bulk-buy store cupboard staples like rice and pasta to save money, I am hindered by a lack of storage space.
I have little to no choice over which supermarket I shop at. With only 2.5 hours per week care assistance from social services to allow me to travel to and from the store and complete my shopping, I can only shop at the two supermarkets that are closest to my home and also have an inbuilt car park. Cheaper shops are either too far away or don’t have a car park attached. Online shopping with home delivery is only helpful for non-perishable items, and even still, the cheapest supermarkets do not offer this option.
I hope this account gives some perspective of what everyday life is like living with a disability and contending with the poverty premium in the UK today.
This is a guest blog based on personal lived experience. The views of the author do not necessarily represent those of the APPG on Poverty.