One of the greatest fears currently facing people on Disability Living Allowance (DLA) is when they will be reassessed for Personal Independence Payments (PIP), and whether they will still be deemed eligible for the benefit. The current timescales for reassessment is that anyone receiving DLA whose claim is coming up for renewal will be reassessed at that time, and those who have previously received an indefinite DLA award will start to be reassessed from October 2015.
Many people who have the High Rate Mobility element of DLA will have swapped their benefit payment to receive a car on the Motabilty scheme instead. The whole point of the Motability Scheme was that it was recognised that the cost of buying a decent and reliable car that met the needs of the disabled person was going to be prohibitive in cost.
My first Motability car was a Ford Focus, but not long after I’d had it I was assessed as needing a new electric wheelchair, and unfortunately no matter which chair I’d gone for, it wasn’t going to fit into the car. So Motability allowed me to change my car earlier than the normal three year lease. The most important feature I was looking for in a new car was a high boot to accommodate the height of the hoist to get the wheelchair in and out, and also have room for the chair itself.
In an ideal world I would have been looking for a small car – such as a Ford Fiesta (I do really like Fords, but any car around that size) in a bright blue, but the large boot thing crossed those off the list, and mostly left huge van-like cars and seven seaters, and when I was looking they all seemed to come in dull colours. I’m going to be honest and say I didn’t want to be driving such a big car, particularly a big box of a van, or a seven seater. And yeah, maybe I’m being picky, but I am in my 20s without six children, and I’d feel silly driving such a big car.
So, I went out searching for a car that fit what I needed, and with a tiny, tiny dash of what I wanted (as small as possible while still fitting the chair). I went to 17 dealerships in my town and, measured a lot of boots. Funnily enough I ended up back at the Ford dealership – looking at the Ford C-Max which is actually based on the Ford Focus, but is taller. It had other benefits as well, it was generally higher – which really helped with getting in and out of it. It has keyless entry, which to me is such a lifesaver. I often have wrist flare ups which makes it difficult to turn a key, but also when you’ve put your wheelchair away, and are using sticks to get in the car, it saves valuable time of searching through your bag looking for the keys, when every additional second on your feet is incredibly painful. Similarly when I reach the car, I’m drained and again it’s so handy to just worry about getting in, than trying to unlock everything.
Motability also offer a means-tested grant scheme. Usually if you pick a bigger car, it has a larger advance payment – and they expect you to cover it, as you chose it. However the reason I needed a bigger car was for documented disability-related reasons, so I was eligible for the grant.
Having the car allows me to leave my home on good days. I’m not always driving, in fact the vast majority of the time someone else drives me, but my wheelchair can’t be lifted without a pretty heavy-duty hoist, so isn’t possible to go into another car. I also can’t use a bus (for lots of different reasons too numerous to mention), and the wheelchair accessible taxis are few and far between, charge a lot more (despite being illegal), need booking days in advance and often don’t turn up and so leave you stranded.
I see my car as an extension of my mobility aid. It’s a place I store things helpful to my condition; it has seats I can cover in cushions and blankets so I can sleep on the journey and have less pain; it has a seat I can recline back so pressure is taken off my spine; it has additional medications hidden away just in case and if I’m out for a longer day, it’s a place I can return to in order to rest/sleep to help me get through it.
Without my car I’d be trapped at home, so the thought of losing my Mobility Element when I transfer to PIP is a constant worry. Now, you might think those who are genuine have nothing to fear – but this, sadly, is not the case. Look at all the regular articles in the press about people who have been told they’re perfectly healthy and had their benefits removed, and yet just looking at the conditions or health issues they have shown they’re obviously entitled to the benefit. The high rate of appeals that overturn the decision made by the Department of Work and Pension’s also show things are regularly going wrong.
However, the real fear is that the government have declared their intentions. We know that the fraud and error rate of Disability Living Allowance is just 0.5%, and yet the government have declared that 42% of working-age people will no longer be eligible for the Motability scheme under the new system. They are therefore admitting in perfectly plain language that they are targeting legitimate claimants, and removing them from the scheme. Of course some of the rules have also changed, particularly of concern is the distance someone can walk. Under DLA it was 50m, but it has now reduced to 20m. This will have a huge impact on people with painful conditions that may simply vary depending on the day. 20m is not far at all – it’s often less than the walk into a shop, or from a parking spot to someone’s front door. This will of course mean many people will no longer be able to work, or go to their local hospital or GP, let alone do normal day-to-day activities like shopping or visiting a friend.
I know so many people like me are living with this fear that I wanted to look at some of the possible alternatives and solutions if someone does not receive the new PIP Enhanced Mobility. These suggestions won’t suit everyone, but may provide a little bit of comfort that there is some help available at least.
First of all if you do find yourself in a position of no longer being assessed as eligible to receive PIP and you have a Motability car, you will continue to receive your DLA payments for four weeks, and you will also be able to retain your vehicle for another three weeks from the date of payments stop – so this gives you around two months to try and find an alternative. You will also be given the option of purchasing your vehicle, and can use these three weeks of payments towards the cost of this.
The government has also announced a payment will be made to people in this position to help with sourcing alternative transportation. For those of us that joined the scheme before January 2013, and therefore were unaware of the impending risk of PIP, will receive £2000. For those who joined after this time will receive £1000.
For customers with wheelchair accessible vehicles (WAVs) Motability may be able to help the customer keep their current vehicle depending on their circumstances, and for those with adapted cars they will pay for the adaptations to be made to a non-scheme vehicle.
It’s well worth knowing this information, as in my experience with similar promises, it may only be offered if you ask for it.
Another option is to privately purchase or lease a car from an independent organisation such as Allied Mobility. They offer both a lease option, and sell adapted cars and WAVs that were previously on the Motability scheme. A company like this will be used to dealing with disabled customers, to may be able to offer more assistance with the transfer between cars.
So there is a little bit of help out there, and some alternatives. I’m not saying it’s going to be easy, and I hope that anyone reading this will not be impacted by the changes, or can find an alternative that meets your needs.
Do you have any suggestions you’d like to add? Please comment below.
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What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome is a connective tissue disease, caused by faulty collagen. Collagen is the ‘glue’ of your body and is part of your skin, organs, ligaments, tendons and much more. The condition is multi-systemic, which means it impacts almost all of the body in some way, including the heart, lungs, auto-immune system, gastrointestinal tract, eyes and in lots of different ways that are too numerous to mention. There are different types of the condition, which range from highly disabling, to some types which are even fatal.
The most common type of Ehlers-Danlos Syndrome is Hypermobility type. This is because the most prominent sign is the Hypermobile joints – colloquially known as being ‘double-jointed’. This can occur in any joint, and means the ligaments and tendons aren’t holding the joints in place as they should, and allows the joints to over-extend. This causes damage in the connective tissues surrounding the joints. Joints can also dislocate, or semi-dislocate (subluxate) which is very painful.
As the connective tissue isn’t doing its job, the muscles take over. This means they’re usually tight and in spasm, and overwork which causes additional fatigue.
The condition is genetic and two-thirds of sufferers inherit it from one of their parents. One third get it through a genetic mutation.
How does it impact me on a day-to-day basis?
While I was born with it, the symptoms throughout childhood seemed random, so no one ever realised there was an underlying condition. I had lots of bouts of pain throughout my childhood that doctors dismissed as growing pains, and often my legs or ankles would give way and I’d fall to floor for no reason. My healing was poor and left scars easily. Simple tasks like tying my shoelaces were difficult, I struggled to write for long periods, and my handwriting was awful.
At the age of 15 my pain became constant. I now know this is a very common time to trigger the condition more seriously, but it took almost nine years before a consultant finally stopped shrugging their shoulders at me, and put a name to my condition. For all those years – the years most people are growing up, and having a life – I was getting home from college, or university and collapsing in bed, and spending all my money on alternative therapies to try and get some relief as the doctors couldn’t offer any help.
I have never had a pain-free day for almost twelve years. It’s unrelenting, and even worse is unpredictable. One day I could be limping from my left leg and unable to move my arm, and the next day they’ll be fine but my hip feels like it’s on fire and my neck is locked in place. This is makes it difficult to know what I’ll be able to do that day – and how much help I’ll need.
The condition impacts the auto-immune system and produces too much adrenaline, so I sleep really badly, and have insomnia. The fatigue is crippling, and I often have to spend all day in bed, or unable to function. Often just being able to do a simple task like have a shower, or get dressed is an achievement and all I’ll be able to do that day.
To be able to do something else – like go to a friend’s house, have a meal out or even worse – attend an all-day event is a bit of a nightmare, and involve lots of planning. For days in advance I’d need to rest to conserve my energy, then on the day take every painkiller available, and use every bit of my strength to get through it. Recovery will usually take weeks.
My hypermobile joints are particularly bad in my spine, and so I’ve developed bulging discs, arthritis, degenerative lumbar disease, scoliosis and cysts on my spine due to the over-extension there. As a result my mobility is impacted, and I can only walk with extreme pain, and so use an electric wheelchair.
Why is awareness so important?
The diagnosis rates of the condition are really poor. The average time of diagnosis for sufferers is over ten years, but for many it’s much longer, and some even live their whole lives without knowing what’s wrong with them. Many are also misdiagnosed with other conditions, or told it’s all in their heads. Ehlers-Danlos Syndrome is estimated to affect one in 5000 people in the UK, however according to a recent study, around 95% of cases go undiagnosed or misdiagnosed every year, meaning this figure is in reality much higher.
EDS is treated terribly by the medical community. I wrote a little more about this topic in Rare Disease Day and Ehlers-Danlos Syndrome. In general most doctors spend a few minutes covering the condition in their studies, and so don’t recognise it when they come across patients who are looking for answers. It’s also highly neglected in terms of research, care, NHS services and provision of medical expertise. There are only a couple of specialists in the whole of the UK for the condition, which are usually oversubscribed due to the demand.
There are some quite simple ways of looking out for the condition, so we need to get the word out to front-line medical staff – GPs, nurses, physiotherapists – as well as members of the community, so they can spot the signs as early as possible, and get help for people before they have to live years in pain without understanding why.
If you recognise any of the symptoms mentioned above in yourself, your child or someone you know – particularly hypermobile joints, long-term chronic pain and other unexplained symptoms – please seek further medical advice, and request to see a specialist as soon as possible.
The Awareness Ribbon for EDS features a Zebra Print. This is from the phrase taught in medical schools – “When you hear hoofbeats, think horses, not zebras.” This means when presented with a set of symptoms – the most obvious answer is usually a common condition.
EDS adopted the zebra to say – hey, rare conditions exist too!
It’s the feeling of being completely invisible.
From the people who step around you in queues, or those who look the other way when you’re doubled over crying in pain in the middle of Next, or the people who don’t look down as they walk, and you’re saying, “Stop!” but they walk into your wheelchair anyway, and exclaim, “Oh, I didn’t see you there!”
It’s sometimes down to ignorance, a feeling of it not being their problem, or the person simply being lost in their own world.
38% of people believe disabled people are a burden on society.
But these attitudes spread quickly, and seep into all parts of life. That mindset becomes casual and mainstream, and people feel they can share their thoughts with friends, in public, or even in the workplace. Take one of my managers who said dyslexic people were just stupid, or another who after someone who had two children with Autism asked for support, received a response of, “You should keep your children under control.” Or after an office-place visit from a group of servicemen who have Post Traumatic Stress Disorder got a comment afterwards stating, “Well, they all looked fine to me.”
It also means that despite the Disability Discrimination Act being introduced 19 years ago, and strengthened in the Equality Act in 2010 – so much of the country remains completely inaccessible. Shops, facilities, services and buildings still haven’t complied with the law, and continue to get away with it.
47% of disabled people currently work compared to 77 % of non-disabled people.
I’m a wheelchair user, along with 1.2 million other people in the UK. Last week I had an appointment at my new doctor’s surgery. Their website proudly states the following on the front page: “We work from a purpose-built surgery with good parking facilities at the front, with wheelchair access.” Yet I was faced with three problems before I even reached the treatment room. The front door was really heavy, and swung back to smack my chair while trying to get in. The receptionist, who had watched this struggle, was behind a high desk which meant I had to call up to her. Luckily I was just telling her I’d arrived, but had I wanted to have a conversation privately, it wouldn’t have been possible. The treatment room is at the end of a long corridor, and just before her room was another door propped open. As I got there, the door suddenly swung closed onto me. I tried to open it and push forward, but the doorframe was so narrow – I couldn’t get through.
More than 1 in 4 disabled people say they frequently do not have choice, or control over their daily lives.
My doctor eventually heard the bangs and came out, and it turned out the door had an automatic opener – which for some reason had suddenly failed. That alone was annoying, but I then had to dismantle my wheelchair part by part, with my GP watching me. I have never had an issue getting my wheelchair through a standard width door before. I then had a very awkward drive into her room, trying to hold everything, control the chair and navigate the packed room.
I was mortified. I thought, ‘She’ll think I’m a bad driver!’
Only later did I think – that was their fault. Why should I now be afraid to go to see my GP as I can’t face it happening again?
This happens time and time again. I can’t get into the vast majority of the shops in the town I live in. Those I can have difficulties – narrow sections, steps, are too packed, put displays in the aisles, don’t have a lift, and so on.
65% of people have admitted they avoid disabled people because they don’t know how to act around them.
Over the past few years it hasn’t been possible to pick up a newspaper without finding a story on the welfare state within. Quite often these stories have focused in on people with disabilities, painting a picture that many are claiming fraudulently. How often do you see headlines such as ‘Disability benefits cheat caught out when she was spotted walking the Great Wall of China’ from The Express, or ‘Benefit cheat who claimed £21,000 in disability benefits while working as a boxing instructor spared jail’ on the Mail Online. Or vague headlines that cast doubt on the system itself, such as another by the Mail Online, ‘ Disabled benefits farce: 94% of new claimants have never been assessed by a doctor.’
180 disability hate crimes are committed every day in this country.
While obviously every case of fraud is one too many, the fraud rates of disability benefits are very low. The scrutiny over benefit claimants has had consequences. It has become quite clear that certain sections of society feel that because some people with disabilities receive a form of state assistance, funded by the taxpayer, they should then get a say over their lives. A judgement, a decision over who exactly fits into the category of ‘disabled’ and who does not, and how they should be living their lives. Also over the last few years the support systems available to people with disabilities have been slashed – within the NHS, Social Services, charitable funding and the benefits available to them. Yet the public outcry to this has been minimal. Perhaps they’re too busy reading stories of the lavish lifestyles of benefits claimants, and mainstream documentaries portraying a vision of exactly what these ‘scroungers’ get up to behind the scenes, which increases support for further cuts.
The reality of the situation is completely different – the vast majority of claimants are genuine, and live in fear of the brown envelope arriving from the Department of Work and Pensions saying their support is being reassessed, causing stress and anxiety it may be lost entirely, or reduced. This fear isn’t unfounded – it’s a stated aim by the government. The money is vital in paying for care, transportation and all the high costs associated with having a disability, of which there are many. The Joseph Rowntree Association has found that people with a disability should be receiving at least £200 more per week just have to have an acceptable quality of life, with the rate increasing significantly depending on their needs and disability.
The poverty rate for disabled adults in the UK is twice that for non-disabled adults.
Disabled people shouldn’t feel dehumanised, excluded and invisible. But how do we stop this trajectory from happening, and make inclusion a priority?
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I found learning to drive really difficult. I had lessons over two years, and I don’t even want to begin to work out the cost of that. Neither of my parents had a car, and so my lessons were my only chance to practise.
I found it hard to coordinate everything due to my then undiagnosed Ehlers-Danlos Syndrome, and had awful muscle pain from using them in a different way. I could never have more than an hour lesson as my ankle and foot would go dead, and I found it all very exhausting. In addition, I was also very nervous/anxious, and just thinking about my test caused me to shake like a leaf, which then made me make loads of stupid mistakes.
But my worst mistake was my choice of instructor. I picked a lady who stated she specialised with nervous drivers – but this couldn’t be more wrong. Her style of teaching was to keep quiet while I drove, but then ask me to pull over and ask “Where do you think you went wrong on the roundabout five minutes ago?” When I didn’t know/couldn’t remember she’d get cross. She spent all the lesson pointing out my mistakes, with the atmosphere getting more fraught.
As time went on, I found instead of growing in confidence I became totally convinced I would never pass. It felt too awkward to ‘fire’ her, so I continued with this situation for far too long, ending numerous lessons in tears.
I then went to university, which gave me an opportunity to get a new instructor. He was completely different – calm, more positive and quickly my confidence began to increase. I decided that before I took my test I wanted some more intensive lessons – more than the one a week I was having, but my packed university schedule meant that was impossible. So I spent my Easter break having lessons every day for two weeks, with a test at the end.
However, it wasn’t the total disaster I thought it would be. I got a major for hesitation because on the way back to the test centre a bus stopped in the middle of the road. I couldn’t see around it, and being quite a busy road I thought I’d be likely to meet on-coming traffic if I went ahead. We waited about thirty seconds, and then continued – but I apparently should have gone. I think it was a little harsh, but there you go.
My second test was back in my university town. I was a hundred times more terrified. My legs were shaking so hard I kept stalling, and I made silly mistakes. At one point I tried to start the car three times in a row, and it kept stalling. I couldn’t understand why, until I realised I hadn’t put it into gear.
As we pulled up back at the test centre, my instructor who was waiting outside looked over to see how I’d done. I shook my head. I’d been a mess. My test examiner asked what I’d just said to him, and I said I didn’t think I had any chance of passing. She responded, “Well I disagree.” She then handed me the pass certificate.
I can’t even begin to explain how I felt. I know everyone feels joy at passing their test, but I had convinced myself so thoroughly I would never ever pass, and it had taken so long, and being able to drive was completely life changing. I think it does take on an added meaning when you have mobility problems.
At that point my mobility was going downhill rapidly, and I was struggling to get around the university, and also the long trip home on the train (through London on the tube). But overnight my world opened up – I could get to the shops, see friends, and go home whenever I wanted.
That was almost six years ago. I was lucky I took my test before my condition got like it is now – I’d really stuggle with the lessons, but there is lots of help available to help people with disabilities.
Here are some tips I learned in the process to help you pass when you have a disability:
- You need to be comfortable with your driving instructor. Even if they’re nice, or you’re scared of hurting their feelings – it’s your money, your time and it needs to be right.
- Make sure they fit your learning style. I tend to do a lot better when someone tells me what I did right, instead of making me feel bad by making a big deal out of everything that went wrong. Either explain that to them and hope they’ll adjust to your learning style, or move on if they don’t.
- Explain your health issues to them. They can make adjustments – such as trying to make the seat more comfortable, mixing in practical parts of the lesson so you get a break, or pointing the direction they want you go as well as saying right/left if you have any processing issues.
- Your instructor can request you assessor points the direction they wish you to go in your test as well as saying left/right if you have dyslexia or processing issues.
- If you can provide supporting evidence, you can request additional time while taking your Theory Test or Practical. Make sure to explain any physical issues to your examiner so they’re aware if you struggle to turn, or whatever the issue is. You can also ask for a disability specialist assessor, who should have had additional training in this area.
- Make sure you detail all your needs when booking either your practical or your theory. The last thing you want when you’ve just arrived at the centre when you’re so nervous you can’t think straight is to start having to point out things that aren’t accessible to you. And if you’ve already told them, you’ve covered yourself and it isn’t your problem – it’s theirs.
- If you can’t make it to the test centre for your Theory Test (for example it’s not accessible to you) it’s sometimes possible to take your theory test at your home.
- There are specialist instructors/cars out there if you need an adapted car, or someone used to working with people with disabilities. Ask for recommendations, or ask bigger driving schools if they have an adapted car on their fleet.
- If you receive High Rate Mobility Disability Living Allowance or the Mobility Component of Personal Independence Payment you can apply for your provisional driving licence at the age of 16, instead of the normal 17, which is really helpful.
- Motability and other charities sometimes offer assistance towards learning to drive when you have a disability. If you’re working then it’s also worth approaching Access to Work if driving would enable you to remain in work, or make life easier for assistance with lessons.
- If you need help to find the right adapted car for you, places like the Forum of Mobility Centres or the Queen Elizabeth’s Foundation for Disabled People can help.
Remember it may take you longer than someone else, but you will get there in the end.
Also check out this great post by Disabled In Scotland who details adaptations that can be made in the car, and the different route he took to find the right instructor for him. There are also some great tips here for deaf drivers.
Do you have any tips to share that helped you? Did you find it a struggle to pass your test, or was it a breeze?
Credit to: Michel Meynsbrughen
I belong to some Ehlers-Danlos Syndrome groups on Facebook, and they can be a fantastic resource for information. I wouldn’t know half as much about this complex condition if I didn’t have that connection to others living with it. Today I found out just how powerful groups such as these can be.
It started when a member posted a video of a lady on YouTube called “My Naked Protest.” In the video a lady called Kateryna sits in her chair, naked – and explains that she has been left without care for about a month – and cannot look after herself.
She is now covered in pressure sores and rashes, and doesn’t have any pain medication for her Ehlers-Danlos Syndrome. (She also has brain injuries, Autism and spinal cord injuries.) She has not been able to bathe for a month, and the last caregiver she had washed her clothes in detergent she’s highly allergic to – making her even more ill, which is why she sits there naked. She’s also now having to try and rehome her two cats – one of which is a service animal, as she can’t take care of their medical issues. Making her bed is also impossible, and the sheets are causing her agony without the right pressure relief pads on it.
She explains why she has lipstick on – knowing already that people would judge her for such a thing. She had put it on a few days previously to make herself feel better, but then the carers had failed to show up as promised, so she’d been unable to wash it off.
And so – after being totally abandoned by the care agencies, and after phoning constantly asking for help, and being told over and over that they’ll be there tomorrow – she makes one last desperate attempt to get help. When you have to take your clothes off to get help, something has gone horribly wrong.
The video was published on the 8th January, so she still had a wait – but when the video was posted in an EDS group, a few people jumped into action. Members called to report the problems to Adult Protective Services. Others called the police.
The police visited her – and were appalled by her situation, and made their own report to Adult Protective Services. They brought food for her, food for the cats and toilet paper, and even made her bed. Someone asked a local pizza shop to donate a meal – which they did, along with some large bottles of water. Her medical insurance company saw the video and have arranged for alternative care from tomorrow.
What’s terrifying is that this situation is repeated across the world. So many people with disabilities are hidden away, suffering without carers in place – struggling just to get by.
While this is an awful story – the silver lining was that it was lovely to people pulling together to get help in place so quickly and I hope the next care company don’t let her down again so badly.
Kateryna would like her story to be passed around so others do not suffer as she has. I hope she has a happy ending.