£5,000 to go to work one morning?
This blog post was written to illustrate the extra costs that deafblind people can incur paying for the technology and support they need to live an active and healthy life. It is not representative of every deafblind person, but gives a flavour of what a morning could be like for one person. You can find a list of example costs at the end of the post.
There is a vibrating sensation under my pillow, which tells me that it’s time to get up. I lie in bed for a little longer as I stretch and feel my body start to wake. I sit up and feel the floor with my feet until I find my slippers and put my hands out until I grab my dressing gown.
I think it’s supposed to be pouring with rain this morning, but I can’t see the rain drops or hear them as they splash my windows. The weather people so often get it wrong, so I guess I’ll only know when I step outside and feel either water or just air on my skin.
A friend came to visit me last night, and hopefully she didn’t put anything where it’s not supposed to be. She’s pretty good, but I don’t fancy stubbing my toe on a chair leg, like I did after the last time she visited, as I make my way into the kitchen in a desperate search for coffee.
I make my way into the kitchen – first successful journey of the day. I notice that the floor tiles feel colder than usual even through my slippers. Winter really is here.
I have Braille labels on all my food and groceries so I know what’s what. Once I got the coffee and gravy labels mixed up and ended up with a cup of gravy and milk. That was a bit of a horrible shock to the taste buds! I heat up my porridge in the microwave by feeling the knobs and Braille labels on the settings. ‘Talking’ microwaves are a brilliant invention, but they are not much use to me.
I log onto my computer to check my emails. Oh dear, my support worker is still sick so I’ll have to be make the journey to work alone. But at least I save on having to pay for her train ticket ! I’m not sure if you’ve figured it out yet, but I am deafblind, which means I am both deaf and blind, so I need special equipment to access computers and the world via the internet. ‘Talking’ computers don’t work for me because I can’t hear, so I have equipment which turns words that other people see on a computer into Braille, which I can then read.
The internet and computers have really opened up the world to deafblind people. We can do loads of things independently now like buy our food shopping online, pay bills and read the news. When I’m in meetings for work I often have a typist who types what others are saying and I use this equipment to then read it in Braille. I can also make notes in Braille (obviously during breaks - If only I had more hands!) using an iPad with a Braille display. I’ve been told that my Braille reading speed is about half the speed of speech, so meetings often take a bit longer when I’m involved.
I feel my vibrating pager on my hip so I know someone has rung the door bell. I’m not expecting anyone, and because I won’t be able to tell who they are as I can’t see what they look like or hear their voice, I ignore it. It’s probably just the postman again, trying to deliver my Christmas present from Mum – again - by putting a standard note through the door which I can’t access. I’ll just have to wait until my communicator guide comes when she is well again to let me know what it says. She’s a support worker highly trained to work with deafblind people like me. She translates the world for me through deafblind manual – a language where she spells words on my palm – simple things like when it’s safe to cross the road, what people are saying, what they are doing or even if they are in the room. I have no way of telling otherwise.
My wardrobe is all colour coded so I know what I’m wearing doesn’t look ridiculous. I get dressed, brush my hair and teeth (hopefully not getting toothpaste down my shirt) and now I’m ready to go into the outside world.
Drat, it is raining. At least the train station is only about 80 steps to the left once I get on the footpath. Because I am deafblind, I have no visual cues or sounds like the rumble of escalators, footsteps, traffic, or people’s voices to let me know where I am. I have to rely completely on what I feel with my hands, feet and cane as I navigate the world. Every post, fence, kerb and crack in the footpath is important to me. Last month the council fixed the footpath, which most people would be happy about, but was really annoying for me because I lost really important guides to where I am. I have a Miniguide , which is kind of like a device on a submarine that puts out sonic waves that lets me know if there is any big object in my way. But personally I prefer the traditional red and white cane.
Sometimes members of the public try to be helpful, but they get really confused when they talk to me and I don’t talk back (despite my red and white cane, which indicates deafblindness). I also have a card with me that explains that I am deafblind with the Braille alphabet next to letters so people can communicate with me by putting my hand over the Braille, letter by letter . But hardly anyone uses it. On the rare occasions that they do, I greet them like they are a long lost best friend. I am glad for the amazing technology that allows me to connect with the world via computers, but nothing beats real human conversation – and I really crave it.
I’ve been grabbed, pulled and bundled all over the place as people try to guide me where they think I need to go. I know they are only trying to help, but it can be extremely stressful because I rely on my internal sense of direction to know I am going the right way. When people spin and turn me around all the over place I have no idea which way I’m facing and whether I’m about to step the right way or into oncoming traffic. I also have no idea if I can trust that these people are trying to be helpful, or something more sinister. It can be really frightening.
Thank God this doesn’t happen this morning as I really don’t fancy being lost in the rain. The staff at the station know who I am and someone assists me down to the platform. I know there are 11 steps down to the platform, and I feel each steep kerb with my feet and cane. These touch cues are really important – particularly those little balls on the edge of the platform!
I can feel the train coming from the rush of wind and vibrations on the platform and the station staff help me on. I know it’s five stops to where I need to get off to go to work, and I count the stations by the breath of fresh, cold air that comes into the carriage when the train stops (this is how I know it’s not just randomly stopped mid platform).
On the fifth stop I get off and luckily the station staff have done their job and there is someone there to guide me off the train. All they need to do is put their hand on my shoulder to let me know.
I’ve got really wet feet from missing a puddle with my cane, and there are loads of people about for me to bump into (I do work near the High Street, and it is Christmas). But the short work from the station to the office goes well and I get to work on time. Then my day really begins….
| Item | Cost |
| Vibrating alarm clock | Around £45. You can buy a buy a standard alarm clock for as little as £5. |
| Braille writing machine | Around £500 |
| Support worker | A support worker trained to work and communicate with deafblind people is called a communicator guide. On average they charge £35 an hour, and often need to be booked in three-hour slots. Social services will cover the costs of some of this support, but only if the deafblind person has less than £23,500 in assets and savings. |
| Train ticket | Probably between £2 - £5 per trip, possibly twice a day five times a week (and that doesn’t include any non work related travel to go the NHS appointments or visit family and friends) |
| Refreshable Braille display | Around £3,000 (plus maintenance) |
iPad and cheapest compatible Braille display to use with an iPad | Over £1000 (plus maintenance) |
| Vibrating pager | £145 (plus batteries) |
| Red and white cane to indicate deafblindness | Around £30 for a long cane with red and white tape to indicate deafblindness |
| Miniguide | £300 |
| Braille alphabet card | Braille writing machine (as above), sheets for Brailling (£7.50) and a plastic folder (£2.50) |
| Total cost of the morning | over £5,000 |
Comments
Benedict Leigh
12 December 2012 - 6:59pm
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This sort of mathematical exercise really doesn't help when presented like this. It is clear there are additional costs associated with being deafblind but this is disingenuous. The total additional cost of the morning is, using your figures and assuming that equipment is costed over a year (a relatively generous assumption) , is closer to £125 than £5,000. It's worth noting that the cost of equipment is a small part of this, and the majority of the cost is personal support. This is in contrast to the figure of £5,000, made up mostly of equipment
Equipment and technology can make it possible for deafblind people to contribute their considerable talents and abilities to the workplace. This sort of presentation creates a falsely misleading picture of the costs of supporting deafblind people to be employed, and contributes to the false idea that it is better not to employ people with additional support needs.
A truer reflection of the cost would show that the additional cost is small - compared to the undeniable value of enabling deafblind people to enter into and participate in the workplace.
It is disappointing to see Sense contributing to the myth that it is too expensive to support disabled peopel to work.
*Calculations*
Assuming the number of working days in a year are 230 (assumes 4 weeks annual leave and ten bank holidays). The alarm clock (£40), braille machine (£500), braille display (£3,000), pager (£145), cane (£30), miniguide (£300), and alphabet card (£10) cost £4,025. This is an additional cost of £17.50 per working day. A train ticket is not an additional cost, everyone who commutes to work needs to pay the cost of their travel. The cost of a three hour support worker slot is £105. Assuming three hours of work related support per working day this means that the total additional cost of a deafblind person's morning is in the order of £125.
sense
13 December 2012 - 10:11am
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Most of the costs described are costs that the deafblind person would have to cover themselves. Some of the costs, such as the cost of an interpreter in a work meeting would be covered by Access to Work. None of the costs described would fall on the employer.
The deafblind person, therefore, is the one who faces high additional costs and, therefore, needs Disability Living Allowance or Personal Independence Payment to contribute towards these additional costs.
The piece does not suggest that the full cost is repeated every day. It simply illustrates the costs that a deafblind person faces. For a person starting work, they are costs that would have to be found up front for the first day.
Spreading the cost out over a year is still a very substantial additional cost for a deafblind person to cover. A figure of £125 per day, is still substantially more than DLA or PIP would provide.
thanks, Vanessa at Sense
Barb Percy
15 April 2013 - 10:59am
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I am a Learning Support Facilitator at K college. I am at the moment doing a Level 1 course on Deaf Awareness. I myself, am physically disabled. I found this article extremely useful. It gives a brilliant insight into how basic everyday things become something that the person who is deafblind, has to rely on others. It also shows that with just a little more patience and understanding, the world could be a lot friendlier. All the best to the writer.
Liz
18 April 2013 - 5:01pm
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Thank you, Barb, for your comments and we are glad you found it useful.
As well as showing how deafblind people can need help for everyday tasks, it also shows how technology can give us our independence.
For example, getting someone to help put braille labels on food is so last century; my iPhone and a handy little app enable me to identify things independently. And I long for the day that speech recognition on my iPhone is good enough to do away with the need for interpreters!
What other things could technology help deafblind people with?
As for the cost, specialist technology is very expensive, which is why appropriate funding needs to be available.
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