Yesterday I had an assessment by Social Services for Direct Payments. I’d been waiting about seven months for it after being assessed as ‘Urgent’. The Social Worker was fine – we talked through my condition, how it impacts me, the average day and what help I need.
What I did find interesting during the assessment is that after I was asked to give an overall idea of the help I’d ideally like – she then gave me a list of everything that my Disability Living Allowance was expected to cover, and so Social Services would not. From my list this included all cleaning, gardening, treatments not covered by the NHS, help with pets, and any activities even if they related to quality of life/better health and more.
As an aside, while I was aware of the cleaning issue, I am appalled that Social Services won’t help people with disabilities with cleaning at all. It’s not a cheap service to have, and I find it totally impossible to do such physical tasks as hovering, dusting, clothes washing, changing the bed sheets – and there’s people a lot worse than me out there. So they’ll pay to get you out of bed, and showered – then leave you in squalor to fend for yourselves?
But, back to my main point, I thought it was interesting how far she expected DLA to stretch. I currently use my DLA for an adapted car that has a hoist for my wheelchair. Without this, I couldn’t leave the house – as my wheelchair won’t go on buses, and wheelchair-adapted taxis are a rare sight to behold in my town (and usually double the price). Other people will often use this payment to hire a wheelchair from Mutability, or on taxis to get out and about.
Out of the rest of my DLA I and many others pay for things like extra heating, carers, mobility aids, therapeutic devices, special clothing/shoes, food that’s easier to cook (pre-prepared), the higher rents of accessible accommodation, medications, supplements, extra washing loads, specialist exercise programmes, special cushions, adapted items, insurance for wheelchair/scooter, petrol for additional car journeys (doctors/hospitals/travel to specialists often miles away, physiotherapists, other therapists, assessments as well as journeys most people would walk – but you have to drive instead) and so much more.
Of course people with disabilities are statistically more likely to be on a lower-income than the average person, even when able to work. So DLA may also help towards rent, bills and normal day-to-day living costs.
When I was trying to obtain an electric wheelchair through the NHS, as I am physically unable to manually propel – I explained I was using my Mobility Payments on a car that I needed to get to work. The assessors response was that I should be using it on a wheelchair. I pointed out that if I used it on a wheelchair and gave up my car, the wheelchair would have to live in the garden – and I would have to live on the sofa, as the car was vital in transporting the wheelchair, so what would be the point of that? She had no answer. It seemed it was their policy to be telling people to spend the DLA on wheelchairs too.
But it doesn’t cover a fraction of the extra costs I have for being disabled, and while I totally understand there isn’t a limitless supply of funds – it doesn’t help when agencies are putting more and more strain onto the benefit. Exactly how far do they expect DLA to go?
Access for people with disabilities is something I’m passionate about. If there was another group of individuals in this country that were so utterly restricted from accessing shops, services, or simply going about their daily life – there would be an outcry. Yet access for disabled people is something that is still regarded with apathy, ignorance, and a lack of understanding.
A typical sight on the High Street – a step that would stop a wheelchair user gaining access, that could easily by solved with a portable ramp.
But I too was one of those many, many people that had no idea how poor access was in this country until I became disabled myself. The first time it really hit me how hard something I’d found so easy such a short time time ago, was a few years ago when my mobility got to the stage where I couldn’t walk around the town anymore. I signed up to Shopmobility and rented their smallest scooter in order to do some Christmas shopping.
The whole trip was a disaster. Being winter, most of the shops had closed doors. It’s almost impossible to reach from the scooter to open a door, hold it and drive through – and many of the doors were very heavy. It’s also difficult to get off the scooter at every doorway to open it, and then drive through while standing and trying to hold the door! If you’re regularly having to dismount from the scooter, it very much defeats the purpose of using one to reduce pain and fatigue.
So, I struggled to get into many shops – and this was while expecting to only be able to get into the larger chain stores. Many of these shops packed their aisles with displays, which made it hard to get round. It meant I had to regularly get off the scooter to move displays out the way in order to get through.
On top of this many shops had steps to get into them, or steps in the middle of the shop to another level that I hadn’t even thought twice about before. Tills were difficult to get to, with many having tight pathways to follow, made all the more difficult by the excess of shoppers.
I also found a lack of dropped kerbs around the town centre, with market stalls or delivery vans across many of those that were there, meaning I often had to go a great distance out of my way to take a route I needed to go, which meant between struggling to get round every shop, having to take longer routes to avoid steps or to find dropped kerbs, in addition to the struggle with doors – the whole trip took so much longer than it would normally have done.
An example of a “dropped-kerb” that made my wheelchair slam against it.
The final straw came in WH Smith. It was the final shop I needed to go to. I was pretty much shaking in pain and exhaustion before I even went in, but I immediately found myself stuck multiple times by narrow aisles and poor placement of displays – even worse than any other shop I’d been in, and then got completely trapped in a terrible queuing system. While trying to manoeuvre to free myself, some shopping fell off the scooter. In total exhaustion I got down on the floor to try and pick the items up, but shoppers continued stepping over me to join the queue – making me feel invisible and worthless. Staff watched me, but ignored the whole issue. Another shopper called out to a member of staff, asking them to help – but she simply stood watching. Finally back on the scooter, the only way I could see out was to drive into a display and knock it, which I did – knowing the comments of ‘terrible driver’ I was getting. Finally I reached the till to find it too high, and the PIN machine locked into position. It may be funny to look back on, but this was my first outing using a scooter as someone in their early twenties, gutted at having to be using one anyway – and left mortified by the whole experience (and in agony!). That embarrassment soon turned into anger. Why an earth hadn’t a large national shop like WH Smith achieved the most basic level of accessibility?
I was so upset I wanted to do something, so I found my town had a disability access group, and wrote to them asking for their help. Shortly afterwards I joined the group, and after a lot of nagging, complaining and meetings I was thrilled when WH Smith made a number of changes that made it much easier for people with disabilities to access their store. However, a year later they changed their shop layout again and changed their tills to a self-checkout system that people in wheelchairs couldn’t reach, undoing all our hard work. It quickly became clear to me that access was a big issue, and both achieving and maintaining it even harder.
This shop has a wide pavement outside, giving plenty of room for a ramp, but has chosen not to provide one.
In time I became the Chair of the access group but sadly we are extremely limited in what we can do to improve physical access. Getting change isn’t easy. Many shop owners simply ignore our requests, tell us it’s down to the council to provide ramps, or tell us they will make changes which then never appear. Most of the time I feel the group just bangs our head against a brick wall – but when a positive change is made it’s a great feeling.
However, the law recently changed to make it much harder to enforce the Equality Act. After lobbying from insurance companies, the way ‘no win, no fee’ cases are funded changed so that the claimant has to pay the insurance premiums upfront. These can cost thousands – and are usually more than any damages/compensation would ever be. This has made the ability to afford to bring a disability discrimination case about only possible to the very rich, whether the issue is something relatively simple like a local shop who won’t fit a ramp – to the worst possible cases of discrimination possible.
An excellent example of wheelchair access close by the main entrance.
I’ve barely heard this issue spoken about yet, yet I’m completely horrified by this change and the damage it will cause. It now means we’re relying on simply the goodwill of shop and service owners to make changes – which in many cases simply won’t happen.
This is yet another subtle change in the system that points overwhelming to a systemic campaign against people with disabilities that continues on. But sadly – apathy and ignorance are winning this war.
For more on access, try the post Disability access made easy!
In Britain we have pretty good disability discrimination legislation. It’s quite extensive and covers physical access, employment and more. The Disability Discrimination Act came into force in 1995 – eighteen years ago. It’s been updated and strengthened multiple times since then – in 1996, 1999, 2004 before it finally ceased to exist and was instead included in much broader legislation called the Equality Act 2010. This included seven different protected characteristics which included disability, and states that if two people with protected characteristics have conflicting needs, then the disabled persons needs comes first.
However, I believe there are two particular flaws with this legislation – the first is getting companies, building owners and service providers to pay attention, fully comprehend and implement the law.
The second flaw is around enforcement. I will cover this issue in the post ‘Why we’re losing the war on Disability Access.’
Access Made Easy:
1) Access is generally about common sense. This includes putting a little thought behind decisions such as the layout of shop, and quite simply treating people with disabilities like you’d wish to be treated. For example – many shops have hearing loop systems, but don’t turn them on, fix them when they break, or train staff how to use the system. If you put a blue badge space outside your shop door – don’t use it for storage instead! If you’re installing a ramp to help wheelchair users and those with mobility problems, don’t put it at the back of the building. The closer it is, the better. The law states that it’s not enough just to have an adaptation – but to make sure that it’s usable.
2) Access doesn’t have to be expensive. The law asks for reasonable adjustments, and does make allowances for cost. It wouldn’t be expected that a small shop knock their entire shop down to replace it with a fully accessible one, or to install a permanent ramp. There are always ways to improve access though – such as a lightweight ramp that can be moved, a doorbell placed outside to allow people to call for help if needed, a portable hearing loop system, etc.
3) Never underestimate staff training. I have never had decent Equality and Diversity training, despite working for a range of councils, charities, universities and private businesses. It’s usually a patronising online module that tells you nothing about what it’s like to be disabled. There are lots of different kinds of disabilities out there and stereotypes attached to them. Some are harmful, some are just assumptions. Some I’ve heard just in the last week include:
• Wheelchair users cannot walk at all because their legs don’t work.
• AHDH is a fad, and is just naughty-child-syndrome.
• If someone is deaf just shout at them.
• If your child has Autism, then you should just be a parent and watch them at all times rather than expect their environment to be made safe.
• Only older people can have mobility problems.
Staff that have good training are going to lessen the chance of causing offensive, having complaints made about them – and more importantly increase the chances of meeting the needs of the customer and getting them to return again.
4) Accessible shops, or places with good customer service will get more custom. Disabled people have money to spend too. And to me – a shop that could easily make adjustments and hasn’t says to me “you are not welcome.” It’s mostly because the shops in the town centre I live in is so hard to get around I moved to mostly online shopping.
A cafe in the town centre that is inaccessible to wheelchair users
A few months ago I wanted to buy a gift for someone, and only had one day to buy it. My problem, however, was that my wheelchair was out of action. I checked online to make sure it was in stock, and headed to Homebase. The item I wanted was a plant – so I hoped if I could park outside the door, and go straight to the plant display nearest the door, I might just make it. However, I couldn’t see the plant – so I staggered over to customer service, already way past my walking limit. I explained to the lady I couldn’t stand long and couldn’t find what I wanted. She immediately brought a chair round to me without asking, then went to find the item, rang it up and called for someone to carry it out to my car for me. It seems simple, but it was so rare to be treated this way it actually brought tears to my eyes, which I know is pathetic! I wrote to thank Homebase and the lady in question and hope all their staff are like that. Next time I need to buy something gardening related – I’ll head to Homebase.
It’s important to note – most people will not complain about the step in the doorway, the packed displays, the till they can’t reach – they just won’t return.
5) New builds – get it right! While there is a certain level of understanding that it’s harder for older buildings, if you’re creating a new public building then please make an effort. The town I live in recently opened a massive shiny new art facility that cost £28 million. I was therefore incredibly disappointed they got some really basic things wrong. There was a whole list of issues – but a couple of the problems included a disabled toilet with an automatic light that turned off after a minute. So the person had to get off the toilet, and go outside into the corridor to turn it back on, or have fun in the total darkness. The second was the disabled parking was blocked off by locked bollards. In order to park, a wheelchair user had to pull up in the road, get their wheelchair out, head the 30m or so into the building, find a member of staff, wait for them to unlock it, go back to the car, put the wheelchair back, drive into the space, and get the wheelchair back out again. (For for many non-wheelchair users the distance was too far to reach the building from the road.) It’s very frustrating when such basic things are done so badly.
Finally: 6) It’s the law so just do it!
The staff in this shop ignored my attempts to gain access in my wheelchair. The manager later stated no one else had complained they couldn’t gain access. But how many people didn’t even try?
In terms of access, which simple changes would make your life easier?
The Spoon Theory was written some years ago by Christine Miserandino in regards to a conversation she’d had with her friend to try to explain what it’s like to live with a chronic illness and it’s an excellent read I like to share with people.
Her friend asked her what it was like living with Lupus every day. Christine picked up a handful of spoons, and gave them to her friend, declaring she now had Lupus, and this was her allowance of spoons for the day. A normal, healthy person has limitless spoons and can pretty much do what they want, but someone unwell wakes with a limit of spoons and has to carefully ‘spend’ them and compromise on which task they need to do. Each spoon represents a task needed to get through the day i.e. a shower, getting dressed, making lunch. Each task costs her a spoon. When the spoons run out, that’s it. She can’t do anything else.
So she has to think about what she does, and use her spoons carefully to get her through the day. Someday she wakes
Counting Spoons. (Photo credit: Wikipedia)
up with less spoons than other days, and sometimes she can rest the day before and save a few more up. Sometimes she goes into minus spoons and it causes a massive problem. Sometimes you have an event you have to go to and it will cost you an enormous amount of spoons, but you don’t really have a choice (such as a family wedding).
Those with chronic illnesses often call themselves ‘Spoonies’ because of this.
It’s very hard to understand what it’s like living like this each day and really no one can until you’ve walked in their shoes, but it’s an excellent analogy that hopefully everyone can picture.
You can read The Spoon Theory here.
I detailed my first experience claiming Disability Allowance in a previous post. The second occasion was a year or so later, now with higher care needs, and needing to use a wheelchair and walking stick. This time I received a response saying I needed a medical within a couple of days of sending off the forms – before they could have even read them. I was told a doctor would come to my house.
The doctor seemed fine at first. He asked about my daily life, and what was wrong with me. I had made notes beforehand so I remembered to cover as much as possible. However, he made it pretty obvious he didn’t believe in my condition without actually saying so directly, and snapped at me numerous times when I forgot what I was saying (part of my condition.) His ‘examination’ was dubious. It was literally the following: listening to my chest, poking me twice in the spine, and asking me to walk two steps with my walking stick.
I received a letter saying I’d been turned down not long after. I appealed and the process meant they first reconsidered it automatically. I immediately requested the doctor’s report before they reconsidered so I could see what evidence they were basing their decision on, which I felt was fair enough. I was told this process usually took some time, and I’d have enough time to respond to the report and submit new evidence in addition. Instead I was shocked to get a letter shortly afterwards saying they’d turned me down at the reconsideration stage without me seeing the evidence or having a chance to respond.
It wasn’t until shortly before the tribunal I received a copy of his report, and was horrified. He’d watched every little thing, and instead of asking why I did something, he put it in the report and twisted it. For example I at one point for a minute or so I sat cross-legged because I’m hypermobile, and sitting straight on hurts my legs. I regularly change position to stretch out my back, and legs. He instead wrote that I sat in the ‘lotus position’ throughout with no problems.
One symptom of my condition causes extreme sensitivity, sometimes to sensations that shouldn’t be painful. This is called Allodynia when a normally innocuous stimulation causes pain. I particularly struggle with clothing, and so most of the time I wear loose fitting clothing. On the day on the medical I was wearing a baggy top, and loose pyjama bottoms. They were coloured, as PJs often are. I wasn’t making a fashion statement, but everything else was too painful. I had detailed the struggles I have had in relation to mental health and living in pain to him. However on the page he should have detailed all this on, he instead simply wrote that I wore ‘bright coloured clothes’ so couldn’t be depressed.
He also wrote that I had nothing wrong with me. I could walk fine with no problem and could walk 600 metres. I had no joint problems and no care needs. He wrote my memory was fine, and failed to mention the notes in front of me I was using to jog my memory. I couldn’t believe it.
Again, it went to tribunal and a lady from Welfare Rights at the Council said she would represent me which was a great relief as I’d found the previous tribunal awful and very stressful, which made my condition worse alone. But she informed me she was going into hospital and wouldn’t be able to attend with me during July. I phoned them up straight away and informed them of this. I was told it was fine, they’d made a note on the system and I wouldn’t be given a date during that month.
Surprise, surprise I then got a letter with my tribunal date set for July! I phoned them up again thinking they’d say no problem, and send me another date but instead I was told I didn’t follow the correct procedure. My representative should have written to them to introduce herself, and inform them of these dates. I protested that I’d spoken to the tribunal service and not been told any of this, but that it had been noted. I was told that person had been wrong.
My only chance now was to appeal against the date in writing to the judge. When I informed the representative of the outcome she was very suprised, despite having been in her job for years. So I wrote my letter to the judge, explaining what had happened, and that due to my condition I’d find it tiring, painful and stressful to represent myself, and there was no one else. I heard nothing, so I phoned them up a couple of days before the date and was told my appeal had been refused, but no reason had been given and I had no choice but to struggle on alone.
Once again it was a panel of three, but this time a representative from the Department of Work and Pensions was there in addition. I was pretty worried – thinking he was going question me too, but he was fine. He asked one question about how far I could walk, and otherwise remained silent.
The judge this time seemed motherly and nice. She said my mum could talk freely and not to worry. She asked if I had any comments about the GPs report. I had put together a massive submission arguing with every point the decision maker had made, and then every point the GP had made. I went through it and pointed out every single error. At one point the Disability Specialist rolled her eyes and laughed openly at me as I spoke in a derisive. They didn’t seem to be listening.
Next the GP then started his questions and went over my conditions, asking how things affected me. At one point he asked how my memory affects me, which is a bit of a sore point with me. I burst into tears. He asked if I needed a break, but I was a total wreck. I hadn’t slept, I’d been throwing up and shaking like a leaf. I was wound up tight, ready to snap. I just wanted to get it over and done with and so I pressed on. He asked how I worked. I explained I was doing seven hours a week, I could work from home if I needed to, and I had equipment in the office to assist.
The Disability Specialist came in, going over every detail of my day. Again, I found pure ignorance. Why don’t you get a commode to save struggling downstairs at night, she said? I tried to explain there was no space upstairs for one. I live in a tiny Victorian terrace. There isn’t even a landing, and the room fits a bed, and not much else. But even if I did have one, I would need help to get out of bed, and to empty it – which is still a care need, but she wouldn’t listen. She kept suggesting things, without giving me time to explain why it wouldn’t work for me. She obviously found ‘easy’ solutions to my troubles, and didn’t give a crap they were unworkable.
How can you drive if you have bad wrists? I found resting my arms on my legs, and gripping the wheel at the bottom more comfortable, and I only ever drive very short distances and stop often. How can you work? With a lot of help, adjustments and patience. They fired questions at me, then asked them again slightly differently, as if they were trying to catch me out.
What do you do in your spare time? I paused here. I had been warned about this question. Say you watch TV and they will say your memory and concentration in fine, and that you can sit without moving for hours, even if it’s not true. Say you do anything that requires moving, and you’re doomed. I felt each question was a trap, as they weren’t going to take into account the reality of the situation.
So I said I didn’t do much at all, but I read sometimes. She asked what was the last book you read? I couldn’t remember, but then I said I thought it was a crime novel. And then added a truthful statement – “actually, it was kind of funny – I got to the end when they revealed the killer, and I couldn’t remember who it was, so I had to go back to the beginning and find out.” They all laughed, oh dear, she said.
The judge started asking about my mobility. Can you walk over there? She pointed to the other end of the car park. I’d already stated at this point I could walk about two minutes with difficulty, so I said if I can do it in two minutes and it’s all flat, otherwise no.
The GP: How did you get in the building? I parked and came in. His eyes lit up – so you walked up the flight of stairs? Nope, I parked round the park in the disabled parking, and used the lift.
I don’t remember much more, but I came out feeling like I’d been through the wars, but that I’d put my case forward. Yes I had care needs, and no I couldn’t walk without severe discomfort.
Instead of allowing me to wait for the decision, they said they’d put in the post and it would be with me on the Tuesday morning. The Tribunal was on the Monday. I pretty much collapsed and spent the rest of the day in bed in agony, and the Tuesday as well. I hoped it would arrive on the Tuesday.
The Wednesday was an agonising day from hell. I was at work so had no way of getting to the post until evening. I prayed it had arrived. I was hopeful though – I’d been truthful, and answered every question explaining the difficulties I have.
I remember walking in after rushing home from work, to find mum had got home before me and opened it. She stood with tears in her eyes and her face the only answer I needed. They’d turned me down.
Credit to: Michel Meynsbrughen
This time I wrote to the judge to ask her reasons. It’s the worst thing, the tribunal just say no – but they don’t actually tell you why. There is no set time the judge has to respond to requests, so it took about four months for it to arrive.
It began by laying out everything I said – she needs this, this and this help. She has this condition. Then it got to the reasons – she seemed to exaggerate everything she said, and we believe her mobility is fine; her mum only cares for her out of love, not need; she said she could read a crime novel, so her memory is fine; she got through the tribunal questions without a break, so her concentration/stamina is fine.
It pretty much led to a mini-break down. I couldn’t face a system that called you a liar, and didn’t offer any reasons why and twisted the truth. I was exhausted. Mentally and physically.
I was turned down about a year ago now, and I am only just making my third claim. I now have numerous consultants letters – fantastic ones that detail my condition, how it affects me, the fact I can’t cook a meal and why, that I’m in a wheelchair.
I had help someone who has Fibromyalgia, and spends a lot of time helping people with claim forms. She put my needs into the ‘right’ words. She has the knack of covering a variety of topics succinctly, without going on like I do. I sent the form in, and two days later I had a phone call to say I needed a medical.
I phoned the Department of Work and Pensions up and asked why, with my seven letters, all from top London professors, did they need more information? Oh, I don’t know, she said, it’s up to the decision maker. Can I speak to the decision maker? No. I then asked her a trick question: Will they be looking at my previous claims? Yes, they’ll do that, she said.
BUT THEY ARE NOT SUPPOSED TO!!!!!!!!!! Each claim is supposed to be a fresh one. I have more than one new diagnosis, new medical evidence. They have no reason what-so-ever for opening up the old claim forms, but there is no way in hell they have even opened my new claim form, the phone call came so quickly. So clearly I was flagged up straight away, and I’m being shipped to a GP with no specialism in what’s a complicated set of conditions.
Anyway, the company behind the medical is called Atos, who have a terrible reputation. I phoned them up to make the appointment, and they asked if I could go to the medical centre in town. I said as long as it’s got parking outside, it’s no problem.
She then asked if I was in a wheelchair, and I said yes. She then said oh well you can’t go to the centre, if you’re in a wheelchair or can’t walk unaided, we don’t allow people there for health and safety reasons.
So to make this clear – the building they use in Colchester to assess disabled people, either for Employment and Support Allowance (for those that can’t work) or Disability Living Allowance – is inaccessible for disabled people. It’s like banging your head against a brick wall.
I will keep you updated to how my claim goes. I’m trying to be positive, but drove past the tribunal building today, and I have this horrible feeling I’ll be seeing it soon.