Being Accessible Doesn’t Just Mean Ramps – Blogging Against Disablism Day

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I believe this is the first year I’ve actively participated in Blogging Against Disablism Day. I wasn’t sure I’d be participating this year either, but I’m well enough to write a blog post so am doing so 🙂

I have more than one disability. I have severe M.E, which is the most obvious one as it means I can’t walk so use a wheelchair when I’m able to get out of bed. I am autistic, dyspraxic (considered part of autism) and have anxiety, which is mostly related to autism. I also have a history of severe depression and other mental health issues, which luckily I have recovered from.

When most people think of making things accessible, they think of ramps and lifts. Ramps and lifts are awesome things and I wouldn’t be able to do as much as I can without them. It’s brilliant that more and more buildings and services are becoming accessible to those with mobility problems, though there are still places that need a lot of work. The thing is, mobility problems aren’t the only types of disability. For me, the autism, dyspraxia and anxiety, and previously depression also are disabilities, which I require help with and mean I have different access needs. Of course, other people with different disabilities such as sight or hearing impairments, learning disabilities and such will also have access needs that need to be taken into consideration, but a lot of the time these are overlooked as people automatically think of wheelchairs.

One of the biggest areas of difficulty I’ve had related to accessibility is regarding being able to access services without using a telephone. I have auditory processing difficulties that make hearing someone on the telephone very difficult, especially if the other person is in a busy place, a call centre or the line is bad. I find it difficult to know what to say on the telephone, especially if I’m unable to predict what the other person is going to say. I also have periods of time when I completely lose speech, and have no way of knowing when I’ll be able to speak reliably again. Add on to that anxiety, and using the telephone is an exceptionally difficult task that I try to avoid if at all possible. When I also had depression and for a while afterwards it was just impossible. (The M.E also makes it difficult as conversations are very energy draining without adding on the extra issues, but I’m going to ignore that for now.) To add to things, Johan also has similar difficulties, though in most cases he finds it a little easier than I do.

Now, difficulty using the telephone is relatively common among those with mental health problems, as well as for autistic people. Despite this, one of the hardest services to access without using the telephone is mental health services. Crisis care here is accessed by telephone, a lot of the time appointments are made or changed via telephone, contacting social workers or CPNs is done by telephone. When I was last in contact with mental health services about 18 months ago it was still impossible to use email as a substitute, and when Johan was in contact with them more recently he was also not given an email address, but just a telephone number. If you needed to speak to your social worker urgently and couldn’t use the telephone, it was a matter of tough- either you get someone else to do it for you or go without. Letters can take a couple of days to get to the recipient (ignoring issues of being able to get out to post it) which may be too long in a crisis. Of course, deaf people will also have this problem, so it’s also discriminating against them.

Some areas of the NHS and social services are embracing new technology to enable more accessibility. I communicate with my (physical disability) social worker by email, as I do the OT who is arranging adapting my flat and a few other people. In a lot of doctors surgeries it’s now possible to arrange appointments and order repeat prescriptions online, as well as by telephone and by going into the surgery itself, and more are signing up to that as time passes. Unfortunately there are still a lot of organisations and services though that assume everyone either has the ability to use the telephone themselves or has someone willing to do it for them. I’ve had to send angry complaints to a few companies who insisted that they could only do certain things by telephone (in most of those cases, when I told them they were being discriminatory an alternative method was suddenly found, often meaning an email address).

I’m aware I’ve concentrated on one very specific area where things aren’t as accessible as they easily could be (a lot of the places such as mental health services are already using email internally, so providing an email address for clients who need it wouldn’t be difficult to organise). This is just an example though- there are lots of other areas where services could make things more accessible to more people that they probably don’t think about. I wanted to think of more examples but my brain is too foggy now, so I think I will leave it there. I suggest you go to the main Blogging Against Disablism Day 2012 page and read the other blogs on there 🙂

Important DLA/PIP Stuff

I am taking a minute in between panicking about things such as moving next week to ask my lovely readers to help with something.

Today the Lords are going to be debating the PIP parts of the Welfare Reform Bill. As there have been lots of problems with the consultation, and we’re worried that the changeover is going to be as messed up as that from Incapacity Benefit to ESA, we are asking that they pause the implementation of PIP for a bit so we can sort out all the problems beforehand. I’m sure you agree that this is a reasonable request.

For more information go see Sue’s blog (much betterer than mine- I suggest you follow it as well). Thank you.

http://diaryofabenefitscrounger.blogspot.com/2012/01/clause-80-amendment-50e.html

Responsible Disability Reform

In a long ramble a few days ago, I mentioned how the government is planning on changing disability benefits which will make things really bad and mean that seriously ill and disabled people won’t get the help they need. Turns out the government have also been not telling the truth about the consulting and stuff that they did, and so ordinary disabled people funded research (carried out by other ordinary disabled people) into the government’s plans and things.

As the plans are going to affect lots of people who could really do without the extra stress of worrying if they’re going to lose money, become homeless, lose carers, lose their jobs because they can’t afford to get there, it’s important that as many people as possible read and distribute the linked press release and report. For my part, I’ve emailed it to my MP Dave Anderson (Blaydon constituency) so I’ll report back as soon as I hear from him. I’ll also link to more informative and better written blog posts as I find them.

Responsible Reform Report

Responsible Reform Press Release

Sue March in the Guardian about the report.

Thank you for your support.

Being Happy- Danni Style

Happy Danni
Happy Danni

I am happy. Considering there was a 12 year period where being happy was exceptionally difficult, being able to say that on a near daily basis is awesome. There are lots of things that make me happy.

I like penguins. Seeing penguins makes me smile- it’s very difficult for me to be sad or upset for long when I am around and aware of penguins. When I was depressed I wasn’t able to be properly aware of penguins, so they couldn’t make me as happy as they do now. My living room is covered in penguins, and everytime I spot one I get a rush of happiness in my brain.

I like the colour purple. Purple is nice and calming and reassuring. I also have quite a lot of purple, as it’s my favourite colour. I covered my wheelchair in purple fabric. When we move house my bedroom is going to be purple (and possibly the living room as well).

I have some amazing friends. Most of them are online- I talk to them on Twitter, Facebook and AYME. These are people who make me feel good about myself, which in turn makes me feel happy. I have reduced my contact with people who get me down, which has also helped. Funnily enough, a lot of my friends have depression or other mental health problems, but because they are so nice and kind even with their illnesses they are a positive part of my life rather than a negative.

Reading blogs and being in touch with people on Facebook and Twitter helped me recover from my depression. Being able to read about other people’s experiences and seeing that I wasn’t alone made it so much easier to get out of the hell I was in. Blogging myself (on my old blog) also helped a lot, as it let me get some of my thoughts and feelings into a way that I could understand them. Being on the right medication also helped, as did having doctors (GP and psychiatrist) who listened to me, accepted me as I was, and stopped trying to force me into boxes that I don’t fit into.

Being diagnosed with autism was also a major step in the right direction for me. I had an explanation for why I was different to other people. I came across autistic adults on the internet who were able to teach me mostly through example that being autistic is okay. Accepting my autism made my life so much easier. I’d especially like to thank Kassiane S., Amanda B., Laura T., Laura R. and those who used to go to the Autistic Liberation Front meetings in Second Life for chatting to me and helping me through the period before and during diagnosis, and while my life was turned upside down.

My old social worker Balamory was also a massive help in my quest to recover from depression. She noticed my autistic traits and badgered lots of people on my behalf, helped me find acceptable housing when I needed it, and also found and helped me attend Interface, the autism unit I used to go to. I wish I had a way of letting you know how far I’ve come since I first met you.

Interface was a massive help. It was my first experience of specialist education, and it allowed me to be successful at college for the first time. There were lots of skills I learnt there that I needed to know to help my independence, both taught on the curriculum and learnt just by being there and with the help of the staff, especially my keyworker Louise. Being able to attend such a brilliant facility just after receiving my diagnosis and having a safe space to just be myself made college doable, even while I was still very mentally ill. Without Louise I don’t think I’d be where I am now.

Learning to be myself again was probably the biggest thing that has made me happy. I spent many years trying to fit in with everyone else, and not quite succeeding. Learning that I was autistic, that being autistic is okay, that being different is okay was one of the best lessons I could have learnt. Once I stopped surpressing my need to move (rocking, flapping, pacing, bouncing) in safe places (at home and in Interface) and then gradually becoming less concerned about doing some of the less extreme movements when out in public meant that I could control my anxiety and actually manage with stuff without it becoming overwhelming. Listening to music, wearing ear defenders, wearing tinted glasses, carrying a pen, my stones and a penguin of some kind with me everywhere are all things that don’t affect anyone but help me to deal with things. Rocking and flapping may look a bit odd, but they don’t hurt anyone and are much better than biting myself or melting down (which sometimes results in head banging).

At home I’m free to not do anything to try and fit in. I play with language- making up words, messing with grammar, talk about random things when they pop into my head. Colin, Vicky and Johan know this very well 🙂 I also do some of the stuff that people are less understanding about, such as having something in my mouth a lot of the time (sucking on things reduces my anxiety and helps me concentrate), humming and random singing, making noises with hands and fingers, wrapping myself tightly in my quilt, piling pillows on top of myself. I also ignore “age appropriateness” when at home, so can go from discussing politics or science or other “grown up” topics to talking in very simplified language about wanting penguins or jelly within seconds. I also play with my wooden blocks, and can spend hours just looking at my colour changing lights or sparkly things. One of the things I want is a sensory room or area with soft flooring and nice lighting and reflective sparkly things where I can spend time just to be myself and not have to worry about things like bills or food shopping or anything else that is difficult for my brain. I was originally going to use the space behind the top of the stairs in our flat (maisonette), but since I can’t walk or manage stairs now and we’ll be moving, it’s been put on hold until we move so I can figure it out when there.

Sammie also makes me happy. As much as I wish I could have her living with me and that I could look after her myself, accepting that I wasn’t in the right place for that (before with my mental health problems, now with my M.E.) and that she is doing so well with her grandparents and is happy herself is enough to make me very happy. I have been terrible at keeping in contact with her, but I’m trying to fix that as I love her more than anyone else in the world.

Johan is just amazing. I am so lucky to have found someone who accepts me for who I am, who has similar interests, and who I love being with and spending time with. That he voluntarily took on the role of carer, both with my mental health problems and now with my physical health problems, while he was struggling himself makes him my hero. I does help that he seems to love me as much as I love him, and I would quite happily spend the rest of my life with him.

Colin and Vicky also took on the carer role for me, going way beyond what was needed as a friend. Both of them helped me to become more independent, and that also meant it was easier to learn to be happy. I will be eternally grateful to both of them for this.

All of this- learning who I was and accepting me for me, learning I wasn’t alone and that there were other people who had similar experiences or similar ways of thinking to me, making some amazing friends who help me feel good about myself, some great support from some brilliant people, having a happy daughter, being in a loving relationship, feeling safe and secure and able to be me, means I was able to recover from depression and be happy. And I like it.

Disability Benefit Cuts – A Ramble

I’m having a lot of brain fog issues at the moment, so this may not make much sense and may contain errors. Please correct me if you spot any- I’m not looking stuff up as I’m typing this.

In the UK currently there are lots of cuts to disability benefits occurring. Most of them aren’t being branded as cuts of course- they’re branded as “improvements” to reduce the amount of benefit fraud and help disabled people back into work.

There are problems with this. The two main disability benefits are Incapacity Benefit (currently being replaced by Employment Support Allowance – ESA) and Disability Living Allowance – DLA (which is planned to be replaced with Personal Independence Payments – PIP). Despite all the media saying that there’s massive amounts of fraud with these benefits, the fraud rate for Incapacity Benefit is 0.3% and the fraud rate for DLA is 0.5%. These are the lowest levels of fraud for any state benefit, including the state pension (which is based off age, so I would have thought it would have been harder to claim fraudulently).

For the last couple of years, you haven’t been able to make a new claim for Incapacity Benefit (the out of work sickness benefit). You have to claim ESA instead. ESA is a lot harder to get on purpose. I’ve never actually claimed Incapacity Benefit (I get Income Support for incapacity reasons instead, as I didn’t have enough national insurance contributions and they messed up with the young person’s rule years ago, but never mind :p) but I think you filled in the form, submitted sick notes from the doctor while the DWP assessed you by getting information from the form and doctors, you’d get a medical with a doctor if there was any confusion or they needed any information, and then if you were classed as too sick to work, you’d be on Incapacity Benefit for a while without having to submit sick notes, and depending on why you were on it you would be reassessed periodically to see if there’s any change. That could all be wrong though, as I’ve never done it and I can’t be bothered to look it up right now.

For me, I had to submit sick notes for a bit, but when I claimed DLA and received the higher care rate (DLA is for care and mobility needs due to long term illness or disability, and is not an out of work benefit- you can get it whether your working or not) which meant I needed care frequently during the day and night, I was automatically considered too ill to work and no longer had to submit sick notes and didn’t have to worry about having medicals and stuff. I think this applied to Incapacity Benefit and Income Support for incapacity reasons.

Quick note about Income Support- that’s what you get if you’re poor, not working and not able to work for some reason (being too ill, being a carer, being a parent of a small child). As you can guess from the name, it’s based on making sure you have enough income (as the letters say, how much the law says you need to live on), so some people would get a bit of Income Support on top of Incapacity Benefit, especially if they live alone, also get some DLA (which means you get extra money on your Income Support as well, though it gets complicated so will not discuss them here) or if they live with a partner who doesn’t work, or earns tiny amounts in part time work. If you can work but aren’t because you’re unemployed, you get Job Seekers Allowance instead, which is the same rate as Income Support but requires you to be looking for work.

ESA is a bit different. You send in your doctor’s sick notes as normal at the start (though they’re now called fit notes), fill in a form from hell (all disability benefit forms are forms from hell- with one exception being the 4 page DLA renewal form that I’ve had once but most people never see). They contact your doctors and stuff, then call you in for a medical with ATOS. The medical person may be a doctor, but might be a nurse or another health professional instead. They’ve probably had no experience with whatever it is that’s making you too ill to work (especially if it’s mental health issues) and will probably show no interest in knowing either. The medical is a tick box thingie on the computer, with lots of questions like “can you touch your toes” and “can you raise your arms above your head” (even if you’re claiming for mental health reasons). They tick boxes, then send the report to the decision maker at the DWP, who is meant to take everything into consideration (the form, your GPs and specialist reports, and the ATOS medical) but who is more likely to agree with whatever the ATOS medical person said and ignore everything else (you know, the stuff from you and people who actually know you and your illness/disability).

There’s three rates for ESA. There’s the assessment rate, which is the same as Job Seekers Allowance (and for the more observant of you, the same as the base rate of Income Support, but that’s not really relevant as you can get ESA and Job Seekers even if not completely poor based on your national insurance contributions- they call that contributions based, funnily enough). You’re on that while being assessed (no way!). Then when you’ve been all assessed, there’s the Work Related Activity Group – WRAG rate, which is a bit more, though the politicians who set the rates would still struggle. You’re meant to be put in this group if you’re not well enough to work right now, but you should be able to work in the future with a bit of help and support, so you have to attend interviews with this goal every few weeks (but you don’t have to actively seek work as you do on Job Seekers). If you’re considered too ill or disabled to work at all (there is some criteria for this, such as not being able to walk or self propel a wheelchair 50 metres) then you get put in the support group, which is even more money (though still not enough for those pesky politicians to live off) and means you don’t have to do the interviews.

Unlike the current system, there’s no automatic exemption from reassessment if you’re on higher care DLA. Pretty much everyone (it may be everyone, but I can’t remember right now) will be reassessed again after a period of time, which may be as short as a few months (brain is saying 3 or 6, but I’m not sure which). Even if you’re so disabled that you get put in the support group and get high care DLA, you may have to go through the whole lot again after a few months.

To make things worse, lots and lots of people are assessed incorrectly. They either fail to qualify for the WRAG rate so are expected to go job hunting, or they put in the WRAG when they should be in the Support Group. As this is not on, they appeal. And win- 40% if doing so by themselves, 70% if they get help. There’s currently a massive backlog of appeals, they’ve had to bring in extra judges to process them, and if you need to appeal you’ll probably have to wait a year. While you’re appealing, if you’ve been denied ESA at all you’re allowed to claim the assessment rate (which isn’t much- about £67 a week, and less if you’re under 25). If you’re lucky enough to be put in the WRAG instead of the support group, you get a bit of extra money (though not as much as if you were in the support group) but you’ll have to do those interviews while you’re waiting for your appeal to go through, even if you’re bed bound.

Of course this is all really stressful. Even while there were lots of problems with ESA (especially the tick box medical) and all the charities and even the politicians could see it wasn’t working properly for new claimants, the government in all their wisdom have now started moving everyone who was on Incapacity Benefit over to ESA. And people who got Incapacity Benefit without issue for years (because they qualified, not because they were scrounging- remember the 0.3% fraud rate?) are being thrown off ESA and expected to go on Job Seekers and look for a job. So of course they’re appealing as well, which is making everything worse. Oh, and those of us on Income Support for incapacity reasons are also going to be moved over to ESA by 2013. I can’t see that improving the situation.

So that’s ESA. It’s failing, and the government aren’t fixing it. At least they’re acknowledging there are problems though, while saying we’re all scroungers. I guess that’s something…

DLA next. As I said earlier, it’s for those with a long term illness or disability that means you have extra care or mobility needs. It’s not an out of work benefit, as you can get it while you’re working (and indeed, it helps some people with disabilities to be able to work, by helping with extra costs). Children can get it as well, and if you’re already getting it when you turn 65, you’re allowed to keep claiming it (if you become disabled after you turn 65 though, it’s Attendance Allowance for you, which is different and not as good, but I’m not going into that further here).

There are two components to DLA- care and mobility. The care component has three rates- low if you just need a bit of extra help during the day, or (if over 16) you can’t cook a proper meal for yourself because of your disability (bunging something in the microwave does not count as proper cooking). Middle you get if you have frequent care needs during the day or night, and high if you have frequent care needs during both the day and night. There are two rates for the mobility component- lower if you need someone with you when you’re out and about, and higher if you’re unable, or virtually unable to walk.

Getting DLA is not easy, and the system isn’t perfect. There’s the form from hell (over 40 pages) then all the evidence and stuff, then you might need to have a medical with an ATOS doctor (I think it’s always a doctor for DLA, but I may be wrong). Unlike ESA though, the medical actually goes through what your disability is, and how it affects you and what your care and mobility needs are. I’ve only had to do it once (lucky me!) but the doctor was nice, listened to me, understood when I couldn’t do certain tasks, and let me ask questions and make some clarifications at the end. I’m hoping that’s the normal experience, but I suspect I probably just got lucky.

If you’re very lucky (like me), you get DLA first time. More likely though, you’ll either get declined or they’ll put you on a lower rate than you’re entitled to. This is because the decision makers have a tendency to completely ignore everything you wrote and all your evidence, and send you a nice letter with reasons that appear to be written about someone else. When I asked for them to relook at my claim for a change in circumstances (I became unable to walk) that happened. Anyway, when your unsuccessful, you appeal. It appears that more and more people are being declined DLA, including people who have claimed it successfully in the past and have not gotten any better (or have got worse). I can’t remember how many DLA appeals are successful, but I think it’s a lot lower than for ESA as more claims are accurate to begin with (though that’s becoming less of the case now).

Okay, so DLA isn’t perfect, but once you’ve got it it’s not too bad. You may get it indefinitely if you’ve got something that won’t get better (this means they can look at your claim again, but may not for a long time), or you’ll get it for a certain period of time before needing to reapply. For me, I got it for one year the first time, two years the second time and three years the third time (I then asked for a reconsideration due to change in circumstances a year into the third claim, because I became unable to walk so was entitled to higher rate DLA, having previously got lower rate). My DLA is due for renewal in January 2013, and though I’m hoping not to need it (or at least not need it at as high a rate, as with the current rules I’ll always be entitled to some due to autism) I’ve accepted a probably will, but may have it declined.

Despite its problems, DLA works really well. You know when you’re going to be reapplying. Having DLA works as a passport to other things, such as extra Income Support, Carer’s Allowance if you have an unpaid carer (for middle or higher care), a blue badge and a free bus pass if you get higher mobility, and lots of things that require proof of disability accept a DLA letter. I also really like the 4 page renewal form I got last time, as being able to tick that nothing had changed, sign it, send it back and then getting it renewed for 3 years was really painless. The government could probably improve the form, but at least you know with it you’ve probably gone through everything. The three different rates of care are also good, as it acknowledges the extra costs that come up if you’re mostly independent, but may need some help for part of the day, say for cooking a meal.

The government wants to scrap this mostly working benefit and replace it with PIP. They claim this is to improve it, but they’ve also said they want to save 20% off the costs of DLA with it. They’re doing this by tightening up the criteria for it, so that lots of disabled people who are getting DLA now won’t be entitled to it. They’re removing the lower rate of care, and lots of things that DLA accounted for will be ignored in it. And it sucks. I’ve looked at the criteria and if I’m still as ill when it’s implemented I should get the higher rates still, but I suspect that I will have to fight for it and other people with less obvious disability will be declined it, even if they should be entitled to help. The transistion is meant to take place in 2013.

I’m upset. So are lots of other disabled people, who are far more eloquent than me. The government and the press are bringing in these changes by hounding us in the media and saying we’re all scroungers and we should all be working. My friends, some of whom are just as disabled as I am, are being denied the benefits they need to live. And with all these changes, it’s only going to get worse.