I wrote this a few years ago, a friend asked me to find it and so I'm posting it here so I don't lose it again.
I got up this morning, left my bed (£150), and walked down one flight of stairs. Had a shower (£100)and went in to my daughter. I hoisted (£1000) my daughter out of her her bed (£800) using a sling (£100)into her wheelchair (£2000), then used the overhead hoist in the bathroom (£2000) to put her on the shower bench (£600) to give her a shower.She then sat on the toilet seat (£200). Put her in the lift (£3000) to go down to the sitting room. Most of these costs were borne by social services. I had a bowl (49p) of cereal which I ate with a spoon (inherited). My daughter had a bowl (£8.95) of cereal which she ate with a spoon (£4.95), She wore a bib (£12) and used a special mat (£4). Added to her cereal were dietary supplements to increase fibre content (£2). These costs all come back to me. Later on today I will get into the car and drive to school. For my daughter to sit in the car, I either need a £6000 conversion, a £20,000 new vehicle, a £2000 hoist for her and a £1000 hoist for the wheelchair, or as at present, I use my own back (free but longterm costs probably very high). Oh, I also use a special wheelchair (£500) as hers is too heavy. All costs met by me. I am writing this at my computer using a keyboard (£8ish). I am sitting on a chair (£50). When my daughter uses the computer she needs a touchscreen (£300 minimum), and her specialist comfy armchair (£800). Special word processor with symbols and speech, (£200). I might go for a bike ride later. My bike, value nothing, but for a decent bike, £200-£400?. My daughter's trike with additional straps and supports, £1000. I will finish writing this and then stand up. For my daughter to stand up requires a standing frame, £3000. I might go for a walk. A walking frame for my daughter? £1000. We don't have one yet. Fancy a ball game? Plastic ball, presently £1.29 at the corner shop. £12.95 for a musical ball so my daughter can hear where you are throwing it to. Go to the cinema? Local one's inaccessible so that'll be an 80 mile round trip, thanks. Or go by myself, finding a specialist babysitter. Cheaper to wait and buy it on DVD. A swim? That'll be entrance money for my daughter and 2 carers to lift her. Or £17.50 to hire the local hydrotherapy pool, provided no one else has already booked it. Fly a kite? That'll be another £800 for the off-road wheelchair. Yes, she does have 3 wheelchairs, all for different purposes. If the baby stays she'll be getting a fourth; one to seat both of them. And the government only pays for one of those chairs. None of these chairs give her independent mobility; she'd need a powerchair (£2000) for that and we don't have it yet. Put up a swingset in the garden? £60-200 in the catalogue. Wheelchair accessible? multiply that by ten. And forget about trying the ones in the local park instead... Go on holiday? Can't fly cheapair; they (illegally) won't take the wheelchair. Regular air will charge more for the excess baggage.Wheelchair accessible cabins on ferry only sleep 2, so need 2 cabins for 4 of us, twice the price. Wheelchair accessible TravelInn only sleeps 2 (regular rooms up to 4) so need 2 rooms for 4 of us, twice the price. Wheelchair accessible accomodation in many hotels not available at lowest room rate, more cost. So we mainly camp instead. Remember to allow costs for extra staff. Public transport? Buses are inaccessible. Trains better (if you don't mind other passengers using wheelchair slot to store baggage) but local train station inaccessible so have to drive further away first and pay to park all day. Underground? Forget it. So realistically when car unavailable taxis are the only option. Providing you can find accessible ones that is. And are willing to educate the drivers on the importance of bothering with all the ties and clamps. And pay the waiting charge whilst they clamp the chair down. Clothing. With 2 disabled children (even though one is a baby) I average 4 loads of washing per day for the 3 of us. So clothes wear out faster, as do sheets. as do the washing machine and the drier. 6 sets of school uniform to allow for accidents. Clothing gets stained faster, night splints tear holes in pyjamas. If baby has proposed op, she will need specially made/adapted clothing afterwards. Goldie chews sleeves and collars so they need replacing regularly. Shoes don't wear out at the bottom but splints wear holes at the back, and shoes built to accommodate splints are very hard to find and very expensive when you do find them. Goldie has 2 sets of clothing - one to accommodate her brace, one for wearing without it. The NHS supply 5 pads (nappies) per day for my teenager. I have to pay for any extra (£1.20 per nappy) and also for the liners she uses to increase absorbency (5 per day at 20p each). Food. Both kids on special diets meaning additional grocery bills. High Fibre diet for one of them, so brown rice 87p not tesco value rice 12p. Healthy eating baked beans 67p not value beans 7p. The other one dairy free so soya baby milk £8.30 not standard £5.20. The baby can't cope with pram or buggy very well so special mini wheelchair being applied for. She's already collected 2 special seats, both secondhand on loan but eventually she'll be having similar expenses to the older one in that respect. Both girls have visual impairments. Lighting and other equipment to stimulate vision gets very costly, even if you go for the Argos version rather than the disability equipment catalogues.Toys need to stand up to having a teenager chew on them, and to being thrown around. Specialist play equipment (for stimulating the senses, fine motor control, switching, cause and effect, etc., is VERY expensive, baby toys are cheaper but less appropriate for a teenager (although since her favourite toy at present is the baby's teething ring I am not complaining). Household equipment. Washing machine and drier as mentioned previously. I have worn out 4 hoovers (including one Dyson) in the last 4 years. I also have a steam cleaner and have had to replace most carpets with hard flooring. My daughter chews her way through cables regularly, so averages a new walkman every month (once a week in holidays), she dribbles in the mouthpiece of the telephone which then also needs regular replacements. Televisions and videos have been pulled to the floor; she smashed a £1000 touch monitor before we ever got to use it. She is not wantonly destructive, just sees things and tries to reach for them. Her bedroom needs regular redecoration as she picks the wallpaper off the walls (amongst other reasons). Other costs? to make it possible for Goldie to enter our kitchen (and so learn about where food comes from and why I disappear regularly to fetch it) would mean completely rebuilding it I think - £5-10K. Not going to happen. Similarly finding storage space for all Y's equipment would mean building a garage somewhere (no space) - realistically to meet both girls' needs, we need to move house. As it is, for 12 weeks each year (school holidays) we lose any reasonable breathing space downstairs and thread our way through a minefield of equipment. Costs to me - for specialist training not covered by the LA, £3000 per year. For wrist splints £50 per year. To pay various staff for non childcare related tasks freeing me to do the childcare, variable but can be up to £75 per week. Both girls have frequent medical appointments and hospital trips; I need to find and fund staff to care for the girl not in hospital. Entertainment expenses as we nearly always have to be the hosts - far too many houses are inaccessible. My phones aren't coded; I don't have malicious teenagers hacking them. I do have many hours of daytime calls to specialists, to birth family living overseas, and to my own friends when trapped at home by sick children. And, it has been known for fosterchild to make phonecalls accidentally when I fail to notice them playing with the keys (friend had a 4 hour call to sweden courtesy of her disabled 4 year old). My daughters can't say where they've left things, and between home and school many things are dropped, lost, broken, mislaid, munched by other pupils, chewed by Goldie, etc., I'd suggest that lost equipment is at least as costly. Goldie hasn't damaged neighbours' property but she defaces ours regularly, and wear and tear on paint and wood from angular wheelchair mounts up. And neighbouring children take delight in damaging our own property; ok so usually only destroying the washing line, throwing bottles if we go to the playground and stealing the odd bike, but again, it all adds up. That's just the costs for us. They are relatively low at the moment; they will mount as baby I gets older and starts outgrowing baby supplies. They will mount again as her disability develops, and she will need carers with nursing skills.I wrote that when miss Mog was a baby. I hadn't seen it for a few years; it is interesting to see what has and has not changed. Clearly, the biggest difference is that we no longer have Goldie chewing and finger painting her way through toys and walls and bedding. I'm not sure her absence is anything to be happy about though. We never did get her a walking frame.
Mog, no longer a baby, is no longer eating orally. Not that she ever did, really. She now has a special medical formula at £18 a tin, 4 tins a week. Not at my cost, thankfully. However, an increasing number of my friends are moving over to providing their tube fed children with a blended diet - real food whizzed finely enough to pass through the gastrostomy tubing. And I'm considering it. However, the blender most families say is necessary in order to guarantee no lumps and bumps is £410. Which, compared to the £10 stick blender I use to make soup is a fairly hefty investment.
When I wrote that, Mog must have been very new. No wheelchair, so she was less than a year old (in fact, WySoy infant milk, so she was much less than a year old - she switched to a specialist formula fairly shortly after that). She now has three wheelchairs. One fabulous NHS wheelchair service provided one (several thousand pounds) which tilts, reclines, bounces with her spasm and is moulded to her body to be an exact and comfortable fit. One private buggy which lies flat for when she can't sit up(£1,000, plus £500 for the mouldable liner), and as a back up for times when her wheelchair is in the workshop. And one offroad wheelchair for beaches, mudslides and snow (£700). She has also had, and discarded, a starter type power chair BIME Buggy (£400 from Ebay very secondhand), a Trike (£1000), and a whole collection of different double buggies either to sit with Goldie or to try and work with Little Princess.
She's had a Leckey Advance chair, a Jenx Bee, a Special Tomato MPS, and a Spa armchair. The first three from Social Services, reissued to other children once she had outgrown them. The last a private purchase from a friend whose child had outgrown it. A Monkey Standing frame on loan from the physios, and various assorted sleep systems designed to keep her body vaguely symmetrical overnight (they didn't work).
We did move house a year or so after I wrote the piece above. These days, instead of walking down the stairs (with Mog on my shoulder), I walk around the corner in my ground floor flat. I've upgraded my bed and now have the world's comfiest memory foam mattress. It still cost a fraction of the £3000 Mog's enclosed, ultra safe, profiling bed with super soft and comfy pressure relieving mattress . Thankfully not a cost to me directly, but we all pay for the NHS. I switch off her SATs monitor (£Lots, don't want to think about it, except it's vastly superior to the £800 I spent on our back up more portable one so I'm thinking it's probably vastly more expensive too), and switch off her CPAP (again, no idea of cost except it can't be cheap because we've now been waiting two years for her to have her own machine rather than an old one on loan which we pray never breaks down because no one will be responsible for repairing it).
I now hoist (£1000) Mog from her bed to her wheelchair, making use of the wider folding doors courtesy of our latest Disabled Facilities Grant (total grant £8,000 I think, including a new wider driveway and more functional ramp to the front door).
We have carers every morning but Saturdays, and if they are hoisting Mog into her chair then I am hoisting the Little Princess (or should be, and do some days, I promise) out of her bed (which is the same £800 bed Goldie used to sleep in) and into her £10,400 wheelchair (private purchase topping up a £2,700 voucher from the Wheelchair Service). Having first switched off her ventilator, humidifier and feed pump, and detached her from various tubes and drainage bags. More costs for the NHS.
The heating is set at a cosy 23 degrees C. Partly that's due to the fact that the boiler switches off when I turn it down, partly it's due to the fact that Mog now has difficulty regulating her own body temperature and so it is important that the temperature of the house stays consistently warm. Either way, it's expensive with rising costs of gas. And electricity costs with both girls' medical equipment running day and night aren't the cheapest either.
Mog no longer gets her pad changed first thing in the morning as a matter of course; if she has been dry overnight then the overnight pad gets put back on - our generous allocation of five per day has recently been cut to four. That's just about manageable for Mog but hopeless for the Little Princess who was receiving more than the standard allocation of five before the cuts.
Our car was replaced with a £6,000 minibus, with just about enough tracking to clamp down two wheelchairs. We've since outgrown that minibus and now drive a Mercedes Sprinter with tracking for three chairs, or enough space for both girls and all the equipment we need whenever we go away overnight. £10,000, six years old. Reasonably efficient fuel costs but still significantly more expensive to run than the small family car (or the Little Princess' longed for Mini) which would be all we needed if we three came without the equipment.
The Little Princess has her own private collection of wheelchairs. She shares Mog's offroader; if it's too snowy for tLP's powerchair it's too snowy for Mog to be outside. The Wheelchair Service provide her with a basic folding manual wheelchair. She's just outgrown her £3,000 ultra lightweight Minny wheelchair; we're now looking around to see what might be the next best model for her. But will hold off until she's had all her surgeries and see what mobility she has left once her spine has been fused. Then there's the wheeled shower chair, and her wheeled standing frame (£3,000, private purchase).
On through the day, and most things haven't changed. tLP now has similar nutritional needs to Goldie, for similar reasons, and so please adjust the food prices to reflect today's figures.
Improvements to public transport - our buses are now all wheelchair accessible. Which is excellent, except they only have space for one wheelchair on each bus. So I can't take both girls on public transport unless I'm prepared to have tLP on my shoulders all day. Curiously enough, I'm not. Cheapair do now take wheelchairs; however they charge every passenger a wheelchair tax thus making actual wheelchair users even more unpopular with the average passenger than they were before.
Goldie's not here to paint the walls and pick at the wallpaper. But tLP's
tank powerchair does an excellent job of carrying on her good works. Walls, doorframes and radiators have all taken a serious beating in the past few months. We have an iPAd with a broken screen (dropped onto the hard floor we have in place of carpets to cope with muddy wheels) and an iPhone with a broken screen (run over by a wheelchair once too often), and anything left on the floor will be flattened or shattered, depending on flexibility.
We do still go camping; we don't now camp without carers. We do still holiday with friends and family rather than always taking hired staff with us, but the time is coming when we won't be able to do that.
I see I predicted that Mog would need staff with nursing skills - considering I wrote that before she had her first surgery even, I'm impressed with my ability to see into our future.
I'm not writing this because we need money. We don't. I have adoption allowances, the girls receive Disability Living Allowances and I get a Carer's Allowance on top. These are all costs we can meet. But, there are many many families who have these costs and don't have the adoption allowances to meet them. There are families who have adopted and fostered children since infancy who are now discovering that adult care costs even more and that their income will be halved. And this despite knowing how many thousands of pounds residential care would cost, and how much the families are saving the NHS and SS by continuing to provide the bulk of the care themselves. And there are people under the impression that in hard times, the welfare state should shrink and we should all tighten our belts. I'll tighten my belt if I have to, of course I will. But the additional costs of living with disabilities don't just disappear, however hard we try. At the moment, I can cover it. But friends can't, and that's scary. And as resources (e.g. pads) provided by statutory authorities get scarce, the families are forced to provide more themselves. Without actually having any more ability to do so.
As I was updating this list, a friend was sending me suggestions for other increased costs. I think I've included some, I know I've forgotten more. So, friend (and other friends, and anyone else), do please feel free to add in extras in the comments.
Tia
