DLA is a non-means tested benefit that can be claimed by any disabled person under 65 (over 65 it is replaced by attendance allowance) that require assistance with care and/or mobility needs. There has been quite a flurry surrounding this particular benefit with new changes to how it is claimed in the works that centres on reducing benefit fraud by tightening up the system on a benefit that is the most difficult to claim and have the lowest figure of false claimants already. It is the only benefit I receive personally and in the 14 months that I have been receiving it, (after beginning the claiming process 2-3 years prior and being denied twice) it has made quite a difference to my quality of life.
I am currently in receipt of the the highest rate care component (£71.40 per week) as well as the higher rate mobility component (£49.85 per week). The care component is to help with costs incurred related to requiring care (in my case, round the clock assistance with all personal care components, i.e. washing, dressing, getting to the toilet, preparing meals, eating etc) and the mobility component is to help with costs related to walking, traveling, well getting places. Although these guidelines are in place and you have to meet very strict criteria to qualify and receive DLA, once in receipt, nobody checks what the money is spent on. There seems to be a general line of thought that people on benefits laze about the house all day and have a tendency to spend allocated money on things it wasn’t meant for. Reading quite a bit in the media and on blogs that I follow about either stamping out this kind of behaviour or disabled people justifying and defending their use of it has made me think about what I use it for and evaluate again what I would loose if I lost the £480 or so a month I have come to rely on.
1. Car: As I have mentioned before, the mobility component is spent entirely on a motability scheme car that I can drive that will fit my wheelchair and carer comfortably. I obtained the car after getting pregnant and so hopefully with a bit of smart planning, should be able to fit in husband, carer, baby, stroller, wheelchair and assorted bags filled with stuff needed for everyone. Without the benefit, we wouldn’t be able to afford a car that I can drive, we wouldn’t even be able to afford a large enough car to fit in everything and everybody.
2. Sheltered Accomodation: A chunk of my care component, as I have also mentioned before, goes toward paying for sheltered accommodation. I pay a monthly fee of about £120 (until April 2011 closer to £220 as I’m charged an annual fee regardless of when I moved in and this financial year I have the same fee spread over 7 payments rather than 12) to live in a bungalow with a pull-chord emergency system and a 5-day a week morning visit from a warden who makes sure that everything is okay. It is money well spent, even if I haven’t made much use of the system, partially because the house comes with the services and without paying the fee I wouldn’t be living in a bungalow and partially for peace of mind. I was on my own for a couple of hours this morning and have at times been on my own for up to 12-14 hours at a time and knowing that help is available at the push of a button (I carry an emergency call button pendant indoors) and even if I can’t speak, the nice lady or gentleman at the call centre will call my next of kin and then send out an ambulance to my address supplying basic medical information about me if there is no response, is very reassuring.
3. Groceries: That leaves me with about £150-170 a month to spend on other related things. The stuff I spend this money on is in some cases, easy to guess, but in others, not so much. A significant portion goes towards food and meals, usually around £50-70 per month. I can’t hold a knife without potentially cutting a finger off or dropping it on an unsuspecting toe (usually not my own but of whoever is hovering over me dubiously repeating “I don’t think this is a good idea, Lil”), which doesn’t even approach the subject of trying to cook. I can’t hold or lift most things, I can’t get anything into ovens or microwaves, I can’t butter my own toast, grab a drink, open a can, pour the kettle or pick up my own plate reliable, if at all. These activities tend to end in disaster. My wrists in particular are very unstable, dislocating more often than not when I simply turn my arm. When it dislocates whilst I am holding something, that item, whether it be an oven-hot tray, plate of food, kettle or cup filled with hot water, sharp knife, falls out of my hands and usually onto my lap. As a result, cooking and sometimes eating isn’t something I can do easily, without assistance, at all. As a result, someone else has to do it. My personal assistant is around for 4 hours five mornings a week and that takes care of breakfast, but I have to eat small meals every 2-3 hours. The type of meals that can be served up in advance and left next to my chair ready to eat sometimes 2-3 hours later, are expensive. And so my weekly grocery shop can get rather pricey. I buy snacks, I buy fruit juice (and with a citrus allergy that gets expensive too), I buy fresh fruit, biscuits, ready meals for when someone else has to come along and pop a meal in the oven for me because the usual person that cooks isn’t around. In the months I spent without a carer and left on my own during the first trimester of the pregnancy where I could barely make it off the couch, I spent all of it on buying food and drinks that can be left at 6am in the morning on the coffee table and would still be edible at 6pm in the evening.
4. Coffee: The less obvious things on this list includes decent coffee for Chris and when I am not pregnant, for me too. Whether he is off to work at six in the morning or signed off sick himself, he is still being woken up about once every hour to assist. Some times it’s simply a matter of dislocating a joint and being in pain and needing some moral support, other times it’s needing help putting a tricky joint back in and being pregnant, it feels like most of the time now it’s requiring assistance to visit the bathroom at what feels like every five minutes. My breathing is much worse at night, acid reflux and ulcers act up when you lie down, seizures can occur at night and headaches start in the early morning hours. I need medication, I need cold compresses or ice, I need a glass of milk, a sliced banana at 3am etc. If you never get a decent night’s sleep, that first cup of coffee early in the morning when you’re an avid coffee drinker, is priceless, well expensive, but the experience has to be priceless. I am also still putting away a few pound a month as I can towards a decent bean to cup coffee machine to replace the current has been on its last legs for years coffee machine and maybe, we’ll get to it maybe in a year or two.
5. Health and Cleaning Products: My skin doesn’t tolerate anything and my brittle asthma is worsened by chemicals, pollen, smoke, you name it. As a result, I spend more money than most of purchasing neutral and natural products. I also spend more money buying more accessible containers, like bottles with push down tops, smaller containers rather than large ones, electric toothbrushes and peripherals. Although I can’t do much cleaning and do have help with washing, it’s nice to be able to wash my hands with hand soap without requiring assistance to get the soap out of the container. It’s nice to be able to carry a hand gel in my bag for when public toilets are not that accessible and be able to afford luxury items like super soft tissues and toilet paper.
6. Parking And Petrol: Blue Badge parking is free in most places, but not every where; most car parks charge for parking. If we want to visit the cinema in Bath for example or park near the A&E entrance at RUH, there is a small car park just down or across the road for both, but parking costs in central bath are extortionist. I can park where it is convenient without worrying about the cost by allocating a small part of my care component toward parking fees as needed. Public transport isn’t a very realistic to use when you’re very pregnant, in a wheelchair and on your way to a medical appointment. Driving comes with additional costs, the most obvious being petrol. Driving to hospital in particular happens at least once a month and then there’s the shorter trips for when I am just too unwell to make the journey over uneven streets, even if it is just a few blocks away.
7. Small Household Items: It takes months, and I am starting to worry that it may be years for council employed social workers and occupational therapists to supply equipment, however small. My tea mug has sprung a leak and if I wait for my current OT, for which I have already been waiting about 9 weeks on various items, to resolve the situation, I won’t be having any hot drinks for quite some time. The mug is £8 – 16 on-line. The same logic applies to various things I need to make life indoors a bit easier; drinking straws, a nice water bottle, a sturdy book stand, a wheelchair bag, a small hand bag that does not dislocate my shoulder and the list goes on and on. Some items are to expensive, some add up very quickly to more than I can afford and so quite a few things are on a wish list that I’m not sure my council OT will ever get to, but there is a limit on what I can spend and so some things I either just have to manage without or wait months to receive. But thanks to DLA, not everything goes on that list.
8. My Computer: I have also spent and will continue to spend money on computer related equipment. We bought a second hand computer to replace my busted one on e-bay for about £100 and although it’s not quite up to on-line gaming, it will do most other things quite happily. I have spent money on software, like Dragon Naturally Speaking, hardware, like purchasing more memory, peripherals, like a Razer mouse, USB soundcard, webcam and Razer headset. I use my computer for just about everything and would be utterly lost without it. On my current wish list is a one-switch controller for my xbox along the lines of the Games Console Switch Interface Deluxe, some more USB switches and buttons for my computer, a new computer that will run Dragon happily (well, maybe if I save up for a good while), an Android tablet.
9. Delivery Costs: Having things delivered can be expensive. I can’t always go out and even when I can, going shopping is a nightmare. Inbetween the getting there, maneuvering around, searching for items, buying things, planning trips so that I have a personal assistant to push the wheelchair as well as one other person carry a basket / push the trolley and help with the shopping or the alternative, trying to balance items on my lap which then dislocates things rather quickly, I hate shopping. I don’t mind popping into a single store for a particular item or to browse without needing to carry anything, but I really hate shopping. It’s great to have groceries delivered every week and buy almost everything on-line. My favourite store is Amazon and at some point in the near future, DLA money will most likely go towards the £49 a year fee for an Amazon Prime account.
10. Hospital Day Stops: Stamina is a problem for me and being able to stop for a drink and/or snack when we go out is essential. The number one trip out for me are for medical appointments, i.e. seeing a consultant, going for a medical test, visiting the opticians, dentist, doctor’s surgery, midwife, stopping in at the pharmacy to pick up prescriptions. Hospital appointments in Bath are particularly taxing. It’s a 45-90 minute drive depending on traffic, appointments including waiting times run on average from 2-5 hours, getting from the car to the clinic is a 30-minute round trip in the wheelchair and then it’s a 45-90 minute drive back again. Being out of the house for 4-9 hours each time is exhausting. The only thing that makes days like these durable are the breaks. We have to leave early in case of traffic (there are few things as frustrating as being late for an appointment and finding out that you have missed it and will have to reschedule for another time and do it all over again) and sitting either in the car or the waiting room if traffic isn’t a problem for an additional half an hour is just demoralizing. And so we have added the hospital coffee shop stop as a nice little detour. We go in, grab a table and a drink with a snack or small lunch depending on the time of day, pull out our mobile phones and sign into the wireless network. If traffic were horrendous and the day stretches into early evening, we miss out on the drink but pick up a take-out on the way home.
£480-odd can seem like a lot of money, but in reality, it doesn’t pay for all the big things, but then I don’t think it’s meant to pay for the big things. It won’t buy me a computer unless I save up for years; it won’t buy the nice push-button coffee machine that I am still convinced I would be able to use myself; but it will cover quite a few of the little things that can make life easier and less exhausting. Every time the postman rings the doorbell, the supermarket delivery truck pulls up, we parked in a city centre, we use the drive through at MacDonalds on the way back from Bath RUH or sit down at the coffee shop with a hot drink, I appreciate it for what it is. It’s access to things that I didn’t have fourteen months before. I worry about money quite a bit; it’s often difficult to find the money to pay the bills, fill up the car, refurbish a new house after a recent move, get ready for a winter baby and although I am aware that my quality of life is that much higher than a lot of other people and that the household bills means a roof over my head and worrying about increasing fuel costs means I have a car and I no longer live in an empty flat without much furniture, which I have done in the past, it doesn’t mean that the things I worry about aren’t worth worrying about. Living with the additional costs that comes with requiring special equipment and a boatload of assistance as well as the additional handicap of not really being employable or able to work can be daunting; but at least I have that little bit of extra money every month that provide small pockets of guilt free spending. And I have a car, thank you motability scheme.