Phew!

Excellent news this week - Social Services have managed to put a care package in place for me as I transition to parenthood.

The remaining three weeks of pregnancy (plus the two weeks of Steve's paternity leave) there's not really any notable change from my existing care package. My understanding is that they are taking the view that if I've survived pregnancy for 36 weeks on my existing arrangement I will survive the rest.

I disagree with this. I have been horribly isolated and largely housebound during my pregnancy, because I've had to abandon my former activities as I've needed to use up so many of my hours on support for/transport to medical and social services appointments and trying to get the baby essentials in place. We've been extremely lucky in that I haven't had the sort of complications that lead to weekly appointments or all-day clinics. I've also been unable to participate in a number of the recommended activities that I had been hoping to engage with during pregnancy, such as swimming/aquanatal, antenatal exercise/social groups, shopping events that offer discounts on baby equipment, etc.

Plus of course, in this final month, my body is drastically changed and the baby is getting noticeably bigger week by week. We took 30 weeks to get to 3lbs, but only another 4 weeks to get from there to 4.5lbs, and by 39 weeks we should be between 6 and 8lbs. I'm huge! I can't lie on my front or my back any more! I don't dare lie down on the sofa while I'm alone in the house because I can't get back up! I need to wee all the time and I haven't got my stairlift yet! There's not enough room in my belly to eat a proper main meal, I'm supposed to be eating several smaller ones throughout the day but I don't have support to do that! If pregnancy is a marathon, the last bit of it is seriously uphill compared to the previous months!

The failure/refusal of social services to properly support my needs during pregnancy has caused a loss of freedom and has had a documented impact on my mental health (as well as, to a less dramatic extent, my physical health), and that baby and I have "survived" has had more to do with luck and favours than any idea that my support package has been adequate.

However, I have a choice. I can spend the next three weeks struggling to cope AND struggling to fight with social services for resources which, even if I technically win, won't possibly be in place before the birth. Alternatively, I can spend the next three weeks struggling to cope AND trying to focus on thinking the happiest thoughts I can, resting as much as possible, and trying to be ready for what happens once the baby arrives.

And this is the really good news. Once the baby is outside me and Steve has gone back to work, social services have granted me 40 hours per week of support.

It doesn't mean I'll have someone here all the time - Steve works more than 40 hours each week and there's commuting time as well. But if I structure it as two shifts totalling 8 hours a day, 5 days a week, and if I'm careful about making sure that at the end of each PA shift baby and I are safely set up with everything we'll need in the next hour or so to hand, then it will work.

I can feel safe.

Of course it isn't indefinite. The plan is to review it every two weeks (I admit to wondering if this will be two calendar weeks, or a social services "two weeks") and to reduce the package as I recover from the surgery, baby gets the hang of feeding, the medical appointments peter out, a routine begins to develop.

But that's okay. I can go into surgery to have the baby knowing that, at least while the stitches are in, someone will be around to help me fulfil my role as a parent. The first month, which I anticipate as being the most difficult, I will be supported.

I had been so scared that they were going to wait until an actual crisis occurred, that either the baby or I would have to be hospitalised to "prove" that we needed help before any help would be forthcoming. Or, perhaps worse, that the baby and toddler years would be like the pregnancy - baby and I would be trapped at home struggling to do anything more than survive, but that with luck and favours and Steve turning himself inside out we'd scrape along *just* well enough that no red flags would be raised, leading to a situation that never improved and a child who started school with all sorts of disadvantages because I had never been supported to provide them with proper pre-school education, socialisation, nutrition, exercise...

Instead, I have a chance. I *will* be adequately supported for that first month and probably for the second month as well. If I can use that time to engage with the Health Visitors, if I can develop attendance at the breastfeeding groups and other baby activities, if I can demonstrate that I'm eating well, if I can line classes and activities up for 2016, then I will be in a strong position to argue that I need to continue with those things to fulfil my parenting role.

An Update

In my last few posts, I talked about three major obstacles to the baby preparations.

One was the difficulties of getting assessed for a suitable wheelchair. After my last post, a number of people gave me details of companies and charities who had been useful to them. Sadly when I followed up these leads, some weren't able to help, and others were unhelpful by choice, showing me the chairs they wanted to sell rather than the chairs that would meet my needs, and calling it an assessment.

Thankfully, this turned out to be the easiest situation to resolve. The experiences with the "assessors" convinced me that I might as well ditch my fear that going into a mobility showroom would leave me prey to unscrupulous salespeople. I called a local showroom, explained my needs, and arranged an appointment. When I arrived, the salesman had several chairs lined up that did meet my specifications. After a bit more discussion and measuring, I was having a test ride, which included seeing if my favourite one would fit in the car. It did. The salesman then encouraged us to take our time, go home, have a think, and phone him on Monday if we wanted to buy it... and a brand-new one was delivered by him to our house at the end of that week.

I'm gradually getting used to it and I think it's going to meet my needs well.

There was Social Services, where "my" social worker had gone off sick less than three months into my pregnancy. The refusal of Warwickshire Social Services to transfer my case to a different social worker "because she'll be back soon" meant that I had no support at all until my pregnancy was past the half-way point, at which stage it was conceded that the Duty Social Worker team could help out with my case if they had time. I saw a Duty Social Worker at 26 weeks pregnant, but at the time of my last post, I wasn't confident that it had gone well.

At 32 weeks and with my assessment still waiting to be seen by the decision makers, my Health Visitor decided to see if she could intervene in any way. She was told that "my" original social worker was due back in the office any day and would definitely call her back as a matter of urgency. Except of course that this was every bit as much a lie as it had been every time I'd been fobbed off with it during the Spring.

Then at 33 weeks pregnant, for reasons it's probably best not to speculate on, I was officially reassigned to the proper caseload of the social worker who had been the Duty Social Worker who had seen me almost two months earlier. A few days later, I was given a date for my caesarean section which will be at about 39 weeks. I'm not sure if this deadline helped - at 35 weeks pregnant, with four weeks of pregnancy remaining, I think my assessment for additional support during pregnancy was very nearly ready to be submitted to the panel...

On the bright side, the Health Visitor and the no-longer-duty Social Worker are liaising directly now, and I think the midwife might be as well.

Which means I'm free to worry about the stairlift. At the time of my last post, after the delays caused by the absent social worker situation, we had sped through the assessment process thanks to a helpful and super-efficient OT and were awaiting a quote, which arrived, as it was supposed to, just before 28 weeks of pregnancy.

We signed, wrote a cheque for a deposit of over £2,000, and got it back to them next-day. According to the contract, this meant installation would happen within 6-8 weeks - so at the very latest, before 36 weeks of pregnancy (or "well before the end of September" for those of you who prefer a traditional calendar). It was cutting it fine, but it would be okay.

We were quite surprised to then be offered an installation date in the middle of October, or 39 weeks of pregnancy.

There were two problems with that.

One was that it was 3 weeks over the maximum 8 weeks promised in the contract, which really is not good enough when you are forking over five thousand pounds for essential equipment. I signed that contract on the understanding that my stairlift would be installed within the timeframe specified in the contract.

The other was that the date they were suggesting was the actual date for which my caesarean is booked.

After a lot of phone calls (which is always me phoning them, because their inability to stick to their own suggested timescales extends to calling back when they say they will), they have managed to rearrange for installation to happen in the first week of October. This is still breaching the contract - but I don't have the choice to make a big deal about that, because I need a stairlift in place before the baby gets here, and it is too late to get one from a different provider.

I am in my final month of pregnancy. I am supposed to be thinking nice, nurturing thoughts, and doing gentle exercises, and nesting. If I was at work and experiencing this kind of stress, I would be advised to start my maternity leave now. But there's no maternity leave from this situation.

Wheelchairs

As most people who know me are aware, I currently have Alber E-Motion M15 power assisted wheels and I have loved them for every minute of the five years I've had them.

I was incredibly fortunate to get help from Access To Work in being assessed for and part-funding them, and even more fortunate that being self-employed and working from home I was permitted to use them as much as I needed to. They're not categorised as being for my personal/social/leisure use as the assessment was done purely with my work needs in mind, but at the same time, no one expected me to remain housebound/struggle to walk/submit to being pushed/use a badly-fitting generic non-powered wheelchair/etc when I have a properly-assessed-for power-assisted fitted wheelchair that is ideal for my needs sitting right there in my house.

Predictably enough, with pregnancy my wheelchair needs are changing. My wheelchair as fitted five years ago is becoming increasingly uncomfortable to sit in, and my stomach muscles are no longer strong enough to allow me a proper push, especially going uphill, and the increasing size of the bump means I can't lean forwards at all. Even on ideal terrain, such as the absolutely flat smooth surfaces in my local supermarket, I still have to stop and lean back when the baby decides to have an energetic wiggle.

I'm only going to get bigger for the next three months, and my stomach muscles are going to keep loosening and stretching, and then once the baby is born I want to wear a sling rather than trying to negotiate fixing a pram to a wheelchair (or worse, having a PA pushing my baby in a pram alongside parents with their babies in prams while I am baby-less, self-propelling and trying to pretend that I'm the one of us who belongs in the group of parents walking around the park with their babies), not to mention that it's going to become even more important to conserve my energy so that I can meet the baby's needs... I'm going to need a fully-powered wheelchair.

We knew this would be the case before we started trying to conceive, and as such we saved up to be able to purchase a fully powered wheelchair when the time came. My needs aren't especially high, my body is not particularly fragile or unusually proportioned, and of course I won't be sitting in the chair all day every day. But, with the baby in the mix, we don't want to buy something random and second-hand - we were always clear that we'd want it from a reputable source, covered by warranty, and with servicing available locally. The price range we were expecting was between £2,000 and £6,000.

One problem is that the unexpected £5,000 we already have to pay for the stairlift, plus a rent rise and a couple of other unexpected factors that aren't disability or baby related, has left us with rather a different financial picture than we'd imagined.

A bigger problem, though, is that I can't get an assessment - and am loath to just trundle into a random mobility supplies shop and ask a salesperson to assess me, in case what they decide I "need" turns out suspiciously close to what they will make the most commission on or are desperately trying to shift out of their stockroom.

The NHS Wheelchair Services position is that powered wheelchairs are only prescribed for people who need a wheelchair to move around their own home. This is obviously not the case for me. They also can't prescribe a self-propel wheelchair to someone who can't self-propel, and attendant wheelchairs are somewhat dependent on *having* an attendant.

This issue couldn't be tackled ahead of pregnancy because resources are quite in-demand enough for situations which already exist, without being done pre-emptively for situations which only "might" occur such as conception of a baby. But my GP and midwife have, since week 10 of this pregnancy, tried every route they can think of, up to and including obtaining the Wheelchair Services referral form and then writing all over it that while we know WS won't fund or prescribe a powered chair for me, maybe they could just *see* me and *advise* on what sort of chair I should be privately purchasing... nothing. The most useful response we've had is "well, whoever assessed for her last chair can assess her again," except of course that was Access To Work and even if they hadn't been hideously defunded in the last five years, my non-work needs for late pregnancy and early parenthood are not their remit.

The Social Services OT also tried, but again, all roads lead back to NHS Wheelchair Services, who refuse to so much as see me.

Following a Twitter conversation with a friend, Scope tweeted to me that I could try the Mobility Trust. I've written to them, but have not yet heard back and I believe from the information on their website that they are more about helping people who already *have* assessments out of the funding hole, rather than helping people get assessed in the first place. Steve and I know that despite our current financial upheaval and zero assets, we're still relatively privileged in that we have an above-benefits-level income and zero debt, and as such probably don't come under the charity umbrella.

The best result I've been able to obtain is that one morning, after an hour or so chain-phoning this or that organisation, explaining the predicament, and being told "not our remit, you might want to try (person) at (organisation), their number is..." I actually got to *speak* to someone at the local Wheelchair Services. They still refused to help with an assessment, but they did give me the name of the supplier they usually use, and told me that they regarded that supplier as being a trustworthy and established local business who would assess my needs without a rampantly profiteering head on. It didn't quite work out that way. I made an appointment to go in and discuss my needs and was proudly handed a couple of PDF printouts from manufacturer's web pages, for incredibly expensive made-to-fit support-everything bespoke powerchairs. The salesman seemed to lose a bit of interest when I said that neither my needs nor my budget were quite that high, although he did offer to get one or two powerchairs in and then call me so that I could test them. This is not the same as discussing my needs and preferences and figuring out which of the chairs on the market might best suit me and then getting *that* powerchair in for me to try. It's fine as a fall-back option, but this is an investment of thousands of pounds of our own money, we'd really quite like a few more options and a little bit of guidance!

Part 1 Part 2

Stairlift

I've been supposed to have a stairlift for quite some time now. But what with the insecurity of living in a rented house, and sharing that house with a non-disabled person who likes to run up and down the stairs unimpeded, we never went ahead with it. I carried on going up stairs on all fours, coming down stairs on my bum, and sitting halfway up/down the stairs having a little rest when necessary. It was okay. I'm under 35 and not exactly frail, I've got solid young bones and plenty of padding on them. When I fall down the stairs, so far nothing worse has happened than some cuts, bruises, grazes and/or carpet burn, maybe a bit of damaged clothing, and whatever I was carrying taking a brief flying lesson.

As you can imagine, being pregnant - having a baby on the inside for now and knowing that once the baby is on the outside I still need to get both of us up and down the stairs safely - changes the goalposts somewhat. All of a sudden I'm a lot less flippant about falls. On top of which, as my bump gets bigger, it becomes physically more awkward (and eventually will be full-on impossible) for me to go up on hands and knees or rest halfway if I need to. Steve and I agreed that pregnancy would make us concede to the stairlift.

(At this point well-meaning people tend to sagely advise us that we should move house to a bungalow. Leaving aside the implied insult that we are too stupid to have thought of such a thing, the trouble with bungalows becomes apparent when you try to actually *get* one. Social housing bungalows are too small, privately rented bungalows are too expensive, purchasing a bungalow is out of our reach, and all types of bungalow are very rare. We do search occasionally, but in every category those few that come up and look like they might meet our needs tend to, on further investigation, be on special zones or estates that exclude us with rules stating they are only available to over-55s or that children are not permitted.)

The delays and difficulties with Social Services meant that I was 21 weeks pregnant before the Housing OT Gatekeeper phoned me - and promptly advised that a stairlift would take at least six months to sort out, which isn't a useful answer to someone who needs to be baby-ready in four months. Happily I was able to persuade her to refer it upwards, with the result that she phoned me the next morning and I got an appointment to see the OT at 23 weeks.

The OT was lovely, as OTs tend to be. Along with various other things, including a referral to a specialist OT service for disabled parents elsewhere in the country, she agreed that a stairlift was required ASAP, and since it was therefore a prescribed item rather than a personal choice, gave us a financial assessment form.

Financial assessments are conducted differently by different departments. They all have different criteria. For example, at present, I'm not eligible for welfare because as a household we have earned income - but I don't have to pay for my basic care package because that is calculated on savings, investments, assets, property, trust funds, etc, with our earned income from our current work being disregarded. For a Disabled Facilities Grant, which is what would normally pay for a stairlift... everyone had assumed that we'd be eligible, but it turns out we're not eligible due to Steve's earnings.

Which means we (meaning he) will have to fund the stairlift privately.

Which will be about £5,000.

There's no choice though. We don't have a downstairs loo and there's nowhere we could put a commode downstairs, therefore if we want me to be able to use the loo with hygiene and privacy, which in the UK is considered a pretty fundamental necessity for anyone, let alone a pregnant woman or new mother, we need a stairlift.

At 26 weeks the OT came back with a couple of engineers in tow to measure things and pull faces, and the proper final itemised quote should be with us by 28 weeks.

They tell me there's then a 6-8 week wait after I get the quote, confirm the order and stump up the deposit before work can start. The particular parts for my particular measurements and prescription need to be shipped in and then of course the relevant engineers must be booked. That will bring us to 36 weeks or as near full-term as makes no difference, or to put it another way, I might end up using a bucket in the lounge after all, or trying to find the money to allow me to spend what should be the "nesting" period in an accessible hotel room. I guess the best case scenario is that if I go into early labour, they might not be able to release me and baby from hospital until the house is habitable.

That the delays and heel-dragging of social services in the first half of my pregnancy has resulted in my basic predictable needs for the final stages being cut this fine makes me even more upset than the money aspect.

Part 1 Part 3

Not 24 weeks

I don't know if anyone was watching closely enough to notice, but there has been no 24 week update, and there is also no 24 week picture, and now I am just over 27 weeks pregnant.

This is largely because there's been just too much other stuff to deal with. All three of us are healthy (usual parameters), no emergencies, just... Stuff.

The first bit of the Stuff is Social Services.

This was very much a planned baby, and part of the planning was getting input from Social Services before trying to conceive. I'm pleased to say that we got a good, positive response. We were reassured that we had an absolute right to a family life, and that Social Services would support us to meet not just basic survival needs, but also to fulfil my role as a parent. The child is not automatically considered "at risk" and if I struggled to meet the child's needs then before Child Social Services would even consider getting involved, Adult Social Services would need to have done everything possible to enable me to look after the child myself. Specifically I was told that instead of my case remaining effectively "closed" (as it is while a person is stable and their needs are being met by their existing care package), once I informed them of a pregnancy I would be on the active caseload of a named Social Worker, they would review me every three months during pregnancy and the first year of the baby's life, or more frequently if necessary, and as such my care package could be altered according to the rapidly changing circumstances.

That filled us with confidence and we went ahead. Spool forward to Spring 2015. Eight weeks pregnant, I met "my" social worker, and we got on well. She was every bit as positive. We decided that she would line up all the various referrals to Occupational Therapy and Independent Living and so on, but given my history we would wait until my 12-week scan before forging ahead, to save on upsetting encounters if anything went wrong.

So, after my 12-week (actually 13 and a bit) scan, I phoned her office... was told she was off sick but would be in touch when she got back the next week. Nothing happened. Phoned again at 17 weeks... was told she was off sick but would be back the next week. Nothing happened. Phoned again at 19 weeks... was told she was off sick and they didn't know when she would be back. I pointed out that the baby was not going to wait indefinitely until "my" social worker was back and asked if I could be transferred to someone else's caseload. The answer was no, but that a Duty Social Worker would call me back.

(Duty Social Workers are to named social workers as duty GPs are to named GPs. They're fully qualified, and authorised to open and read confidential client files and take necessary action. But they're supposed to deal with that day's emergencies and situations requiring an immediate response, not ongoing or future care requiring familiarity with the case or time for research about a specialist situation - and they prioritise their time, so if you *can* wait until tomorrow, the chances are you will.)

Nothing happened. At 21 weeks, I phoned again and explained that pregnancy is only supposed to last 40 weeks, so the baby was more than half-way here, I was having increasing difficulty doing things and that while I appreciated I wasn't an absolute emergency, I really quite urgently needed to hear from a social worker if we were going to avoid me AND the baby becoming one.

Finally, two days after that, a Duty Social Worker called me. He'd opened my file; he'd seen that "my" social worker had been intending to start off a number of referrals as soon as I'd had my 12-week scan but that she'd gone off sick before this could happen; he agreed to authorise and send off those referrals, marked as Urgent in an effort to catch up to where we should be. However, "my" social worker was expected back within a couple of weeks, so they couldn't transfer me to anyone else's caseload or conduct a reassessment.

I was really pleased that things were moving at last, but of course that was when the challenges really started. Because I had no social worker to oversee things or fight my corner, I had to try and comprehend the whole system myself. First getting past gatekeepers, then being referred on to yet more people or organisations, and trying to keep track and make sense of who everyone is, when I see them, what their remits are... I'll go into more detail in another post.

At 22 weeks, someone from Independent Living saw me and agreed to formally refer me to be reassessed by a social worker. At 23 weeks, she phoned me back and told me that the referral had been postponed because they wouldn't transfer me to another caseload, because "my" social worker was off sick but would be back in two weeks. Does this sound familiar? Can you guess what happened? That's right, two weeks later (25 weeks) I was told that "my" social worker was still off sick! But, obviously, they couldn't transfer me to someone else's caseload, because she would likely be back in two weeks!

*headdesk* *headdesk* *headdesk*

Thankfully by this point my list of "two weeks" was long enough that it was conceded I could be reassessed the following week by a Duty Social Worker for my third trimester needs. Her findings would be submitted to a panel who would decide what help I would get.

I honestly felt sorry for that Duty Social Worker. I think like many social workers she went into the profession wanting to make things better for people, but... she was visibly stressed and very disillusioned. I had prepared notes ahead of the meeting with an outline of the sort of bare-minimum support I felt I would need. The moment that has stayed with me is the moment when she sighed and said "I don't think you'll get this. Do you really want me to ask?"

Outwardly I replied that yes, I wanted her to ask, because if she didn't ask, then I definitely wouldn't get it!

Inwardly I curled up in a terrified ball. At 26 weeks, the baby was already wiggling so much that the movements could be felt from the outside, and if anything went wrong, there would be a chance of both of us surviving it. There is no turning back. I'd only started on this journey after getting reassurance that it would be okay - I thought I had been as responsible as possible in ensuring that if I ever did have a child I would be able to provide a decent level of parenting. And now here was a social worker who, in contrast to the positivity of those I saw pre-conception and at 8 weeks, was so doubtful about the likelihood of me getting support that she didn't even want to ask the panel for it.

She also let us know that it would be at least a week before she got the chance to type up the reassessment. In an effort to do something positive, I offered to send her my notes to save her some typing time. Then, before sending them, I spent a couple of days going through them, being rather more specific about the help I need, why I need it, what the risk factors are if I do not have that help, how I am currently struggling/failing to meet this or that criteria because of lack of help. But it is not a positive experience to spend days thinking intensively about the things you will struggle or outright fail to do for your child due to lack of resources that you reasonably believed you would have.

The only other positive I can draw from that meeting is that the Duty Social Worker didn't seem to disagree that I would need the help I said I would. She just feels that with austerity, social workers' requests get turned down more than they might have done a couple of years ago, and she doesn't like it when the panel say "no" to her.

At this stage, there's not much I can do about Social Services other than hope that the Duty Social Worker manages to persuade herself to present my case, and that the panel respond favourably to the information. It will be at least another couple of weeks of hoping before I hear back.

Meanwhile, there's still more than enough to keep me occupied with stairlifts and wheelchairs...

BADD 2015: Progress

Written for Blogging Against Disablism Day 2015.

Years ago, I participated in BADD 2009 with this post about an offensive blog comment I had received. The commenter had noticed that, participating in a Bucket List style meme that was going around at the time, I'd mentioned that having a child was among the things I would like to do. She felt it her duty to inform me in no uncertain terms that it would be "cruel" of me to inflict my "seriously broken" self on a child and instructed me to "stay on birth control and accept (my) fate" of not being a parent.

It wasn't the first time I'd had to put up with that kind of garbage. In the earlier years of my illness, in an exchange I've never quite managed to get over, my sister had somewhat triumphantly told me that now I was sick I would "just have to give up" on my lifelong hope to one day have a family. When I made a slightly stunned effort to assert that disabled people could still have children and that as long as I secured the right support it would be possible, suggesting an au pair as just one potential option, my mother joined in with the marvellous line "why have kids if someone else is going to raise them?"

After having to deal with attitudes like that from my own family, I wasn't exactly going to be left devastated by a semi-anonymous blog commenter. On the contrary, having the attack coming from someone I didn't know meant that I finally had a chance to reply without worrying about the feelings of the person who'd just insulted me. But I was still a little bit concerned about what sort of response there might be, considering how BADD posts tend to get rather more exposure.

The support from the online disability community took my breath away. People were angry right along with me. Directly and indirectly, via comments and emails, parents shared their stories - not sugar-coated success stories or bitter tragedy ones, but real stories including the hard work AND the joys and achievements involved. The BADD archive, for every year since 2006, offered a category of posts on "parenting issues", both for disabled parents and for parents of a disabled child. Not to mention all the posts in other categories, written by disabled parents but not about parenting!

I felt more encouraged, rather than less. I learned about all sorts of little tricks, suggestions, ideas, and resources (although if anyone can suggest an active non-Facebook replacement for the sadly now defunct Disabled Parents Network, it'd be a help). I was able to access publications written for disabled parents telling me what sort of support I should be able to expect from Social Services, and how to go about accessing it. Sure enough, I spoke to Social Services and got written confirmation that I would be supported in my parenting role. I'm also pleased to say that having this more concrete grasp of what I'm doing appears to have enabled me to put my family's fears and prejudices to rest.

In October 2015 Steve and I are expecting that baby. We are confident. Our baby, our so very wanted baby, will arrive and will be loved and cared for, and part of that is due to the hope and practical help that BADD unlocks.

Inaccessible Accessibility

I am, and have been for some years, a holder of a Blue Badge. The Blue Badge is a wonderful thing for access. My badge is up for renewal in a couple of months, and Warwickshire County Council have very helpfully (credit where it's due) sent me a renewal form and some guidelines.

They need proof of:

• My name, in other words my marriage certificate.


• My address, in other words my council tax bill.


• and my eligibility, in other words my letter confirming my award of Disability Living Allowance including the High Rate Mobility component.

So far no problem.

BUT!

They don't want the responsibility of handling original documents. They want me to send certified copies.

Okay, that's fairly sensible too. I prefer to keep my original documents in my own posession and I appreciate the effort to reduce the risk of losing them.

According to most of the UK, a certified copy is a photocopy of a document that has been verified as being true by a person who holds a certain position of responsibility. A doctor, a policeman, an MP, a civil servant, you get the idea. The Jobcentre made a certified copy of my marriage certificate when I went in to change my name. Or, that proud institution the Post Office will make certified copies of up to three documents for the fairly reasonable sum of £7.15 as part of their passport and identity services.

These certified copies are good enough for most institutions and can be used for opening bank accounts or getting mortgages, but apparently they're not good enough for Warwickshire County Council's Blue Badge scheme. Warwickshire County Council insist that the certified copies must be made by someone who not only fits the usual criteria, but also knows me personally and is not a relative.

(Amusingly, however, I can self-certify my own photograph for the badge as a "true likeness" without it having to be corroborated by anyone.)

I couldn't quite believe it and phoned them to check. The conversation went a little bit like this:
(Me): I'm a blue badge holder. I don't drive. I'm written up as "socially isolated" on my care plan. I don't know that many non-relatives. Can I bring in my original documents to your offices and wait while you copy them?
Only if you know someone here who can confirm that you are who you say you are.
Oh. No, I don't. Well, can I send normal certified copies from the Post Office?
Do they know you personally at the Post Office?
No, but they do proper legally acceptable Certified Copies...
They have to actually know you and be able to confirm that you are who you say you are. We've had to introduce these measures to combat fraud.
But you seem to have made it difficult for precisely the people who the scheme is aimed at! The reason I don't know people is because it's difficult for me to get out and about!
I can't discuss policy. There must be someone. Your best bet is someone who owns a local business. Do they know you at the local shop?
No, they don't know me at the local shop, because I'm a blue badge holder and as such I don't walk to the shop.
Or your bank?
I bank online. I shop online. I work online. I do most things online, because it's really difficult for me to get out and about and that is why I have a blue badge!
If you're working, how about your boss?
I am self-employed. I don't have a boss and I doubt you'd let me self-certify.
Anyone you know through work who runs their business?
Clients? Some of them would be eligible, but most of them have never met me, because I work online, what with the whole being eligible for a blue badge because it's difficult for me to get around issue. They only know me on email and phone calls.
But they know that you're you - they can do it!
May I ask you a question? Imagine you have a business. Imagine you try to project a professional image to your clients of being capable and self-sufficient. Would you feel comfortable placing yourself in a position of need? Giving one of them your disability benefits confirmation letter to thoroughly examine?
er... I see the problem but it looks like that's what you're going to have to do.

Warwickshire County Council, ladies and gentlemen. Recommending that I go whimpering to my clients. Advising me that I am obliged to do this in order to obtain an access tool. Refusing to accept the perfectly accessible and inexpensive identity-checking service offered by the Post Office. Creating additional barriers. Well done, boys and girls.

There is a happy ending. Another disabled person is helping me out. That doesn't make Warwickshire County Council's attitude acceptable.

Now, to take a deep breath and try to rewrite this post in a less ranty form, in the hope that explaining their error to Warwickshire County Council might lead them to change things in future.

Restrictions Apply

Sometimes I find it quite difficult to use social media, as a disabled person. Not so much on a technical level, as on a privacy level. How much can I share with which people? How can I try to be sure no one gets the wrong end of the stick?

As a recipient of certain kinds of disability assistance I have to be aware that I may, at some point, be the subject of an investigation without my knowledge. That's not paranoia; the DWP quite openly advises that (over and above investigations of individuals reported as potential fraudsters) it regularly carries out checks on random samples of claimants. I'll be surprised if, in 2011, this doesn't include checking social media use.

I have nothing to hide. However, social media centres around succinct postings. Twitter is the extreme example at 140 characters, but even where there isn't a limit, it's not the done thing to leave a comment on someone else's blog that is 500 words long. How can I possibly fit in all the explanations and circumstances about how I manage to do something despite my limitations? Attitude plays a part as well. If I'm posting about having gone out somewhere with friends, my readers don't want to read, and I don't want to write, a post detailing which joints hurt and what kind of headache I had and how many times I had to stop and rest, that's just depressing!

My posts and tweets aren't earth-shatteringly important, but here's an example of what I mean:

What I want to tweet:
"Steve and I went for a nice walk round the block this evening."
What I feel I should tweet to avoid accusation:
"Steve pushed me in my wheelchair around the block this evening."

What I want to post:
"I had chicken primavera for dinner. Never had it before but it was really nice. It's chicken, pasta, mushrooms and veg in a creamy sauce."
What I feel I should be adding lest the DWP are watching:
"I had chicken primavera for dinner. It was a ready-made microwave meal because of the difficulties I would have with preparing such a meal from scratch. I had to sit down while the meal cooked. I ate the meal sitting at the kitchen counter because I was unable to carry it through to the main room without dropping it. The meal was only in my house in the first place thanks to the wonders of online shopping."

What I want to blog:
I went into town by myself! I bought X, Y and Z! I had cake! I feel very proud of myself!
What I feel I should add for the benefit of anti-fraud units:
It was the first time I left the house in a month without Steve right there next to me. I had difficulty getting a wheelchair-accessible taxi. I bought a coat in the sales but I could not try on any other clothes because I lacked the energy and co-ordination to safely get changed by myself in unfamiliar surroundings. My pain levels were high and the medication I took to relieve the pain had the side effect of making me feel very dizzy and sick. At one point I became lost despite the simple and familiar layout of the town centre. Despite purchasing and consuming a sugary snack in the hope of boosting my flagging energy, I was unable to accomplish all the tasks I had wanted to because I was too exhausted. Staff in the final shop I visited were concerned about how ill I looked. When I got home I had to nap on the sofa.

You see what I mean? The positive stuff is true. The negative stuff is true. They don't contradict each other if you know the full story, if you know me you can see how they mesh together. But if you were only reading one side of it, you'd think I was either fit as a fiddle, or the world's worst whinger.

I'd be interested to know how other disabled people manage to hit the balance between staying positive online, but not jeopardising their DLA.

Oops

Should have seen this one coming, really.

For several years now I've been considered by Social Services to need help in the mornings, to get properly and safely washed, dressed, medicated and generally ready to face the day. We only took it up a few months ago (whole other story), and it has been working well and has made a very welcome difference to my life.

This morning my assistant arrived and rang the doorbell - some people have key safes but since I can usually get to the door one way or the other, we've chosen not to have one. Normally that's fine, but today, the Roomba was running. I did not hear the doorbell. I did not hear the doorbell again. I did not hear the knock on the door or the call through the letterbox. The blinds were all shut (unsurprisingly as I was not yet dressed). The poor woman ended up basically running around the house knocking on all the windows with increasing panic. Eventually she reached the one by which I was sitting, but by the time I'd levered myself up to crack the blinds and see who was knocking, she'd already run back round to the front of the house and was about to call base and ask them to ring me... she was extremely relieved when I opened the door.

We've decided that while the Roomba is a wonderful thing, it's best not run when I'm expecting my care calls.

Good news

This post is not wedding related. And truth be known, I feel guilty about posting it at a time when cuts and reforms are playing merry hell with the lives of so many of my disabled friends.

I appear to have won at Social Services, and now I don't know what to do with my good fortune.

As part of Steve going back to work, I've been reassessed. Steve's new job involves a much longer commute as well as regular trips further afield, and that in turn means that there's less expectation on him to provide my care.

This is going to get complicated so first I have to explain about Direct Payments.

Direct Payments are paid into a bank account in my name and I am the only person who can access that account and distribute the money. All contracts are between me and the PAs or agencies who I choose to employ. This gives me control over my care. To give a simple example, I could decide to skip showering on a Thursday in order to 'carry over' enough time for a long bubble-bath on Friday.

What I can't do is take the money and spend it all on sweeties and computer games. Social Services closely monitor the account to make sure that it is only spent on items and services approved in my Care Plan. I can't invest it, and it doesn't even count as my money on my tax return. And once it's gone, it's gone - if I have long bubble baths every day for a fortnight and then realise there's no money left in the account to pay the agency for the rest of the month, that's entirely my problem and my responsibility.

Supposedly this reduces the admin costs for Social Services as they are no longer the first point of contact and no longer have to manage the carers or negotiate with agencies. They identify needs and then supply the money. Choosing the best way to spend the money to meet those needs is no longer anything they have to worry about.

So I've been identified as needing 45 minutes of help with personal care each weekday. I have some interviews (sales pitches) with agencies this week and hopefully something will be set up soon. Once it's set up, there's also scope for us to call in an agency carer should I need one when Steve's away from home for longer periods - even if we had to add the extra money privately, the 'account' would be in place.

They've also changed my social care. Previously I got money for the stated purpose of employing a PA for three hours a week to help me do "out and about" things I needed help with. This was about £30 per week - most of it for the wages of the PA, the rest to cover specified necessities like Employer's Liability Insurance, placing job adverts when I need to hire a new PA, that kind of thing.

Now, my assessment says I am at risk of social isolation (the internet doesn't count, who knew) and therefore eligible for two days per week of "daytime opportunities", but thankfully identifies that it would be inappropriate to send me to a daycare centre for two days per week. So what Social Services are doing, is taking the money they would spend on my daycare centre place, and giving it to me as a Direct Payment. It is rather more than £30.

We've identified that I will continue to employ my PA for three hours each week as a baseline, but after that, it's looking a bit blank, because I simply can't think of much to do.

This is apparently an indicator that I have already become used to social exclusion.

I don't just have to use it on PA wages. For instance I asked if I could use it for taxi fares to go to a knitting group or to a friend's house, situations where I don't need a PA sitting right there with me for two hours, but I need someone to make sure I get safely there and back. Apparently I can, as long as I get a receipt, and keep a log of the purpose of the journey (which must be 'social').

The best and worst of this system is that there's no list of approved uses. There couldn't be, because there's so many different things a person could do. I have to think of something I'd like to do, and then find out how much it costs, and then they'll tell me whether I can use my Direct Payments account for all, none, or some of those costs.

It's also a bit experimental. My Independent Living advisor tells me I'm the only person on her caseload so far with this setup. So no clues from that direction.

Ideas, anybody? So far all I've got is an Action Point of going to the library on Wednesday to see what clubs and groups and things are running in the area.

If you want to imagine the future...

In my last post I spoke about how, thanks to my particularly fortunate circumstances, I should not be too severely affected by the proposed cuts in the Coalition's Comprehensive Spending Review.

I wrote that in the same frame of mind as a parent might hug their warm, safe, living children after hearing about a fatal school bus accident. It's okay. I'm okay. The bad things happened to someone else. It's terrible, but it was someone else.

That emotion dealt with, it's time to acknowledge that I am not so unaffected as I would like to believe. This is difficult for me to post as it involves hard truths not just about my condition but also my business and my relationship, but Bendygirl's video has persuaded me that it needs to be said.

Hard truth #1 is that I am dependent, physically and financially, on my partner. I contribute to the household in the ways that I can, but ultimately, he's providing for me.

I work, yes. I worked for a company for just over two years and now I've been self-employed for about eight months. I have a growing base of satisfied customers, I pay National Insurance, I will be doing a tax return, and each month, the business expenses are met with a bit left over. Go me!

Unfortunately, much as I hate to admit it, hard truth #2 is that the bit left over isn't a very big bit, and nor were my earnings while I was PAYE. It's always been well under £8,000 per year. I simply can't work very many hours and I'm not in a position to raise my rates.

So the long and short of it is that if my relationship fails, meaning that I am no longer housed and supported by someone else, I will have to wind up the business and seek help from the state until such time as I am able to find employment that pays enough for me to live on without demanding more than I am physically able to give.

A lovely big squishy truth now - my relationship is fine. That's why we're planning a wedding. Excuse me while I cuddle that truth for a little while.

I do feel, though, that part of what makes the relationship fine is that we both know we could leave at any time. I'm not with him just because he can pay the bills. We started our relationship in the knowledge that we can both survive as single adults - we choose to be together, every single day. It's not nice to think of exit strategies, but at least I knew that if something unthinkable happened - for example, if he were to hit me or to announce that he was leaving - I would be able to get a taxi to a friend's house and then start phoning Social Services for support. I would be able to claim money for food on an emergency basis, I would have a few hundred quid in savings to see me through for the first week or so, I would have help to apply for income replacement benefits, and thanks to my DLA status I would have to be put in appropriate accommodation.

This is no longer the case.

The Coalition are aiming to reduce the number of DLA claimants by 20% (600,000 people). That's all very well, but the rate of fraud on that particular benefit is just 0.5% (about 15,000 people), which means that there are 585,000 people who are legitimately claiming, whose conditions have not changed, and yet who are going to get kicked off a benefit which is frankly a lifeline. Believe me when I say the bar is already set quite high for who can and cannot get DLA - it's not awarded for minor illnesses. Remember the official disability facts and figures? There are 11 million disabled people in the UK and yet only 3 million of them get DLA. Long-time readers will remember all the trouble I had with my DLA appeal a couple of years ago. Spending the best part of a year trying to fight the system while also trying to cope without the money. It's not to be had for the asking.

(It should also be reiterated that this shifting of the goalposts purely a cost-cutting exercise. DLA has nothing to do with whether a person works or not. Many DLA claimants are in work and paying tax. In many cases, it is their award of DLA that allows them to buy the care and equipment that enables them to continue working.)

If I were to lose my DLA, it's not just the money that would disappear. All sorts of things go with it - daft stuff you wouldn't necessarily think of, like help getting your water if there's an emergency and your street is put on a standpipe, or eligibility for things like Disabled Person's Railcards.

Let's be positive, though, and assume I keep it. Next, I'd need income replacement benefit. This would be ESA, the benefit that is being phased in to replace the old Incapacity Benefit. ESA divides into two groups. One is for people who are never likely to be able to work - mostly people with terminal illnesses with only a few months left to live. This group get full and unconditional benefit for as long as they are ill (in other words, until they die or a miracle occurs). It's a small group - currently about 6% of claimants. The other group is for those who, with support, would be capable of some work, and their receipt of the benefit is dependent on them fulfilling "work-related activities" such as voluntary placements or work experience placements...

Actually that's not quite true. There's a third group for ESA. The third group is those very definitely disabled people whose conditions don't quite fit the boxes. Those with fluctuating conditions. Those who would be considered capable of "mobilising" fifty metres if they had an appropriate wheelchair, even if they do not in fact have such a wheelchair, nor any way of obtaining one. These people are put onto normal Jobseekers' Allowance with all the hoops and hurdles thereof, and drop out of all disability monitoring at the DWP. No specialist support. No reasonable adjustments. Just sanctions if you do not sign on or if you do not apply for enough jobs.

Assume, then, that I would get either work-related activity ESA, or that I would be discarded onto JSA. Finally, I have to find somewhere to live, and this is where it gets really tricky.

First of all, as a person under 35 I would only be eligible for a room in a shared house. Sharing a house is a tricky prospect for a disabled person. You need the people you live with to be able to understand about your disability. You need them to understand, even when drunk, that your mobility aids and assistive items aren't their toys and that you really do need a proper sleep schedule. You need to be able to get help to fulfil your share of the chores, and Social Services do not provide help with housework for people who live with "able-bodied adults". I wouldn't last five minutes.

Of course, you also might need certain adaptations to the property. That's expensive and I doubt councils will fund much of it. So maybe that would mean not having to enter a house-share because it's not physically appropriate. Which means we're looking at temporary accommodation in (a) a hospital or (b) a hotel with an accessible room. It could happen, but it'd be expensive. Perhaps a better solution would be care homes? I don't require nursing care, but it would be a room, and it would be accessible, and the other people would understand my situation.

Heh. Well, yes. That's a solution. It's already a solution for many people. Live in a care home. They remove all your income replacement benefit, and they remove all of your DLA care component, and then they give you £20 a week of "pocket money" to cover anything that's not basic food and bills. Shampoo, conditioner, deodorant, makeup? Pocket money. Clothes and shoes? Pocket money. A laptop computer to enable you to communicate with the world? Pocket money. These things could be considered luxuries, but would YOU employ someone without them?

DLA mobility component is different. People can use that however they see fit. Some people hand it all over and get a leased Motability adapted vehicle. Some people use it to hire or purchase a mobility scooter. Some people use it to cover the difference between what the NHS will pay for a wheelchair, and the price of a wheelchair they can actually use. Some people pool it with others in their care homes to fund an accessible minibus. Some people keep it and use it for taxi fares so that they can do things like, ooh, go into town and sign on or do Work Related Activity as part of their ESA/JSA requirements.

The Coalition intend to axe DLA mobility component for people in care homes. Adapted cars, taxi fares, and in many cases, wheelchairs, GONE. When challenged, the government said that local authorities should be providing transport and daytime activities for disabled people in care homes. These would be the same local authorities who have been told to reduce their spending by 25%...

So if the Coalition's plans are successful, then for the next seven years at least (until I am 35), my choices are to stay with Steve, or to attempt to bounce on a welfare safety net that will be so small as to be negligible. Can I still honestly say that we live together out of choice, when my best case breakup scenario will be either virtual imprisonment in a care home, or living out of a suitcase in a cheap hotel? Ironically, the additional pressure this puts on my relationship only increases the chance of it turning sour. And since neither of those situations are going to enable me to pick up the threads of my life and move towards getting back into employment, it makes me even more likely to remain benefit-dependent for longer.

I say again, for myself as much as for the people reading this, that my relationship with Steve is stable and loving and going nowhere. In that respect I am more lucky than many disabled people who find themselves increasingly dependent on their partners. But one thing you learn with adulthood-acquired disability is that life can change in an instant - I'm scared that the safety net which caught me once, and which I may rely on to catch me again, is being removed.

Medical Examination

So, Disability Living Allowance, also known as DLA and a great source of both help and stress. To recap, this is the money given to disabled people regardless of income or work status, to help meet some of the unavoidable extra costs associated with disability, from wheelchairs to incontinence pads to home delivery fees to Meals On Wheels. It's split into Care and Mobility components, awarded at different levels depending on the extent of difficulty you have with each of these aspects.

Now, a quick timeline. I applied for DLA again in February 2008. I was turned down and asked for an appeal. This took until October 2008 to arrange. I won and a backdated award was made, for two years starting from February 2008 when I had first applied. So the award expires in February 2010.

As such, I got a renewal pack in October 2009 - they give you plenty of time so that you have a chance to access support from the Citizen's Advice Bureau or similar organisations. In November I sent off the completed renewal pack, including:

• Their 40-page form, completed with the basic and general answers.


• A typed 26-page document giving the more detailed answers they ask you to provide to their questions, including information about good and bad days, equipment I use and how I use it, support I receive and so on, because these answers just don't fit into answer-spaces the size of a credit card on the form.


• A copy of my current medication and equipment prescriptions.


• A copy of my Social Services care plan and contact details for my social worker, occupational therapist, GP, Access to Work adviser and everyone else associated with my disability needs.


• A statement from Steve as someone who lives with me.


• A statement from my PA as a person who is paid to look after me.


• A medical report from the ME/CFS specialist who formally assessed and diagnosed me.

In addition they will have written to my GP for her opinion, and she will have written back in support of my application, just like she did last time.

But they say that they "do not have enough information."

They want me to be examined by a doctor from ATOS healthcare next week.

I'm not entirely sure what that doctor is supposed to discover in his 20-60 minute session that has not already been provided in my own testimony and corroborated by several different types of person associated with my care. Especially considering that there are no easy or visible diagnostic criteria for ME/CFS. It's not like counting the limbs of someone who claimed on their form to have had two legs amputated and going "yep, looks like you are right after all". Variable and invisible conditions are a little more complicated.

He will be coming to my house, so I have a glimmer of hope that he just wants to check that I do have the assistive devices I claimed to use and that they're not covered in dust, that my to-do list doesn't include renewing my subscription to Hill Walker Weekly, and that I say "ow" often enough.

But even though I tell myself this... even though I know I successfully appealed once and can do it again if I have to... even though I know I have not lied on my forms... even though I know the doctor will get paid regardless of what he says about me... I've known a few too many people with a few too many horror stories about medical examinations for benefits purposes, up to and including doctors getting a claimant's condition wrong, writing down things they had not asked about and could not possibly have observed, bullying claimants into signing blank forms, and in one memorable instance, ticking the wrong gender box.

I think it's like when people are pregnant, and everyone comes forward with the stories of six weeks of labour, of a hundred stitches inside and out, of the midwife being busy and the cleaner having to do an emergency C-section using only a biro... and even though you know it probably won't happen to you, it preys on your mind. What I could do with right now, if anyone has the time, is a few comments saying "I had an ATOS medical examination, it wasn't a problem, the doctor was on time, he was nice, he listened to what I said before writing it down, let me take my time, and a few weeks later I was given an indefinite award at what I feel was the correct level."

Please?

There is no pause button on my life.

I feel that this is an appalling oversight on the part of the manufacturers. Still, what do we do?



So, I've resigned from my job and the final details have been ironed out. I officially finish at the end of this month, but I have quite a chunk of annual leave left to use up so my last actual working day is Tuesday 10th November.

My handy printout from the nice lady who does the payroll confirms that I only had one and a half days off sick in the last 12 months, which is way below average, even pro rata, and should be a jobsearch asset. I turned myself inside out to keep it that way and I'm so glad I didn't have to screw it up at the end by getting signed off.

It still stings quite a bit that leaving the job wasn't entirely my choice - I could have stayed another few months but would have been trying to work (a) without any additional support or equipment to deal with the increased demands, and (b) in the explicit knowledge that I was not wanted there. But I am still convinced that my decision to not attempt to drag it through the courts is the right one. I would rather use my energy on dealing with the necessities of life (considers another YouTube clip, decides against it) and have a bit left over for, you know, enjoying myself.

I have managed to complete my draft answers for my DLA form, which this time round is just over 19,000 words. It saved a lot of typing that I already had my answers from last time in electronic form, but it wasn't just a straight copy/paste job because they've shuffled the order of the questions, and merged some questions and split others up differently. Although my needs haven't changed, I also had to change some answers to account for factors like the PA and the social worker that I didn't have last time - for instance, whereas last time I wrote "I would like to go swimming, the help I would need for this is XYZ," this time it was more "When I go swimming my PA helps me with XYZ." The help I need is the same but the context has altered and the form must accurately reflect the current situation.

I've got all of my Social Services paperwork up to date as well, which is a relief after the collision of two separate threads of PA issues and the Monitoring Return. Better yet, the Monitoring Return was approved without query and I don't have to do another one until January.

My Access to Work advisor got back to me, and says that although I'll have to re-apply for support with my job as I switch from PAYE to self-employed, since I'm on the books and my needs haven't changed it should go through quite smoothly. I've prepared my "final" forms for my transport support, ready to be stamped and signed by my soon-to-be-ex-manager on Tuesday.

So, all that stuff dealt with, I think after Wednesday I can properly apply myself to researching things like Business Link and getting everything in place to embark on the self-employed adventure in December.

One question. I hear that when I set up as self-employed, I have to give my 'business' a name. Apparently many people use their own names, but I don't really like my full name and I'm not sure I want it to be google-searchable either. I'll probably end up with a generic [name of business advisory service][client number] combo, but if anyone has any ideas I'd be interested to hear them.

And then the rain came down

Things have suddenly become Busy here in the land of Mary. Let's see, where were we up to...

The Second Job has started and is going well. Access to Work agreed that I should have an ergonomic keyboard and mouse, which I bought and they should be refunding at the end of this month. I also explained about how I would be mostly working at home but would occasionally need transport to go to what you might call Company Headquarters, in order to be shown how to do things, or given materials to work with, or to speak to my manager in person. So instead of being approved for "up to 10 journeys a week" (eg five trips To and five trips From work) like I am for my main job, I've been approved for "up to 104 journeys a year", which on average is a To and a From each week, but acknowledges that my working pattern is very, very flexible.

I had a second attempt at the chocolate cornflake cakes, this time using proper dark cooking chocolate. It worked much better than my Galaxy/cocoa powder/water combination. I'd show you a picture, but we ate most of them at knitting night. It probably would have been all of them but we felt we should save one or two for Steve. I would like to thank the ladies for sincerely congratulating me on my achievement without any sniggering.

I got my Direct Payments Monitoring Return completed and sent off. The stamped printout of the transactions for the period covered by the missing statement never did arrive - no idea whether that's the fault of the bank, or the fault of the Royal Mail, although I know which I think is more likely - so instead I made copies of the wage slip and BACS slip for that month and added a post-it note explaining that the statement was lost in the post, but this is what went in and out of the account and look, it tallies up with the end balance on the previous statement and the start balance on the next one. I'm sure they'll contact me if that isn't good enough.

So yeah, all in all I was feeling pretty proud of myself for keeping on top of it all and having everything ticking over.

And then the rain came down.

In among the self-perpetuating drizzle of increased pain levels because of the damp and cold, and grottiness because of increased painkiller side-effects, and getting frustrated and stressed because the grottiness makes it hard to think and the pain makes it hard for me to move so I can't DO things, and extra pain because the stress makes me tense, round and round and round, are a couple of real thunderclouds.

Firstly, my PA told me of a couple of issues that may affect her ability to work for me. I respect her confidentiality as I expect her to respect mine, so all I'll say on that front is: she's a great PA, I'm happy employing her, she's happy working for me, and it isn't anything that either of us have "done wrong", it's just one of those things. But what I can say is that, as an employer, I'm having to increase the gradient of my learning curve to perilously steep levels in order to keep up with what our respective rights and responsibilities are in this situation. I'm also having to spend a few extra hours on the phone and having meetings during the daytime, which interferes with my ability to save enough spoons for work.

Secondly, it's DLA time again. The form is a new one - shaved down to 40 pages of personal and depressing questions rather than the 50+ it was previously - but from what I can see, this has mostly been achieved by trimming down the spaces given for the non-tick-box questions. For instance, the question about help needed to take part in "hobbies, interests, social or religious activities" used to be close on three pages. Now, they provide two 5cmx16cm boxes, one for activities at home, one for activities when you go out. Which I guess is more than adequate if you don't need much help, but if you don't need much help, why would you be applying for DLA?

So Monday evening will be spent trying to contact the Citizens Advice Bureau by telephone (the local CAB is only manned four days a week, for five hours at a time, most of which I am at work). I'm hoping my combination of disability and having a job will be enough for them to allow me to make an appointment. Obviously I'll have to take time off work for such an appointment, but it would still be much better for me than the usual process where you go to the office and sit in the waiting room for however many hours it takes until someone becomes available, and if they don't become available, you come back the next day. It's not the fault of the CAB, who are staffed by volunteers and chronically underfunded for the amount of support they are meant to provide. But it does make it that little bit more inaccessible for those who need it, and it's another thing that shouldn't be soaking up my limited annual leave allowance.

Every time, this makes me angry. Services and support tend to assume a disabled person has an infinite amount of spare time, energy, money, learning capacity, and administrative ability at their fingertips. Get off benefit! Go to work! Squeeze all this crud in on top! How?

Customer Service

Slightly alarming letter from Social Services today, telling me that my Direct Payments Monitoring Return had been due at the end of July and that if I did not submit it within 14 days I would be in Trouble.

Quick call to the office who sent the letter, turns out it's a form that I have to send in with some bank statements and whatnot, to show that I am properly using the Direct Payments money. They sent it to me at the beginning of June. It didn't arrive. Happily, they believed me that it didn't arrive and are going to send another copy.

Much relieved, I decided to pull out my big Social Services folder (when you have brainfog but have to deal with reams of paperwork for government organisations, you develop excellent administrative habits) to make sure that I had all the bank statements and timesheets and suchlike to hand. I felt happy and confident in my filing system - all the bits of paper were grouped together in their little sections, and in date order within those sections - when I spotted alarm bell number two. One of the statements was missing. The one that would have been sent at... can you guess?... the beginning of June.

I'm not even going to bother with a rant about Royal Mail. There is a persistent problem here with mail (particularly birthday cards) not arriving, packages being left unattended on the doorstep, you name it, and all we ever get told is that nothing can or will be done unless the item of mail was sent by a Signed For or Special Delivery service and we are able to get the sender to provide the receipt for this service.

What I am going to do, is praise the customer service of the bank. I phoned the local branch. A person picked up within a few rings, no automated system. The person spoke good English and offered me two options - I could have a printout of the transactions for the missing period sent for free, or I could have a duplicate statement sent, but that would cost £5. I explained what I needed it for and asked what she thought I should do. She offered that she could send the printout, free, but stamp it with the bank stamp and the date stamp, and then if Social Services said that wasn't good enough, then I could pay the fee and get a 'proper' statement. Whole conversation took less than five minutes. Hurrah.

DLA and AA under threat

Yesterday Benefits and Work released some rather alarming news about the proposed axing of "disability benefits", such as DLA and AA. To bring all readers up to speed:

DLA is Disability Living Allowance. This is money paid to disabled people to help cover the additional living costs they face due to disability. It has a Mobility component and a Care component. These are paid at fixed rates (high or low rate Mobility, and high, middle, or low rate Care).

AA is Attendance Allowance. This is sort of like DLA for people over 65, but it is not split into care and mobility - there's just a single high or low rate.

Neither benefit is means-tested for the simple reason that being disabled is expensive regardless of what other income you have. If you work your backside off and earn £20k, you deserve to be able to live the life of someone earning £20k - not to be struggling along in the lifestyle of someone on £12k because you have to shell out a small fortune for absolutely essential, non-negotiable disability expenses. You shouldn't be rendered ineligible for help with these essential expenses because you've had the gall to do things like get a mortgage to buy a house, or put a bit of money in an ISA for a rainy day, rather than spending all your money as it comes in.

Neither benefit is counted as income for means-tested benefit assessments, because the money is given because of additional disability-related expenses, the sort of things where the individual can't choose to save a bit of money by going without.

No one is immune from disability or old age. These issues might not affect you today, but chances are they will affect you at some point, particularly if you plan to live past 65.

All up to speed? Then I'll continue.

The reason DLA and AA are given as money and don't require receipts and suchlike to prove how the money was spent, is because of the huge diversity of disabilities and living conditions it covers, and because the expenses don't always work out that neatly.

Let's explore an example: grocery shopping. I have to pay more for my grocery shopping than an able-bodied person.

First of all, I have to pay for home delivery. I rarely have the spoons to manage to get all the way around a busy, bright, noisy, complicated supermarket, even with a mobility scooter - much less to then be able to get myself and my shopping home, and then immediately put it all away as well. To someone with a condition that makes moving about painful, who has difficulty lifting and carrying, who becomes tired very quickly, or who is easily confused, that's a triathlon.

Second, I have to pay to be able to access home delivery. That means an internet connection and a usable computer, repairs and replacements as necessary. Of course I use the internet and the computer for all sorts of things, essential and otherwise. How on earth would we calculate how much of it is a disability-related expense?

Third, I cannot save money on shopping around. Home delivery usually has a minimum spend. Every week, leaflets of special offers from the main supermarkets come through my door, but I don't have an option to get £10 of food from ASDA and £10 from Tesco and £15 from Sainsburys. I have to pick one shop. I cannot pick the cheapest shops, such as Aldi or Lidl, because they do not deliver.

Fourth, shopping online I cannot take advantage of the "benefits buffet", the items that have been reduced in price in-store because they're almost out of date, or because the packaging's been a bit squashed. It used to be a core money-saver - on my walk home from work, I'd wander into the supermarket and pick up something half-price for that night's dinner...

I had typed as far as my ninth point before I realised I'd gone a bit off course and deleted most of it. Hopefully I've demonstrated my point: disability-related expenses crop up in unusual ways and aren't always possible to calculate - which is why getting DLA or AA in the form of extra money to be spent at the claimants' discretion is utterly invaluable.

The Shaping the Future of Care Green Paper published by the DWP and the Department of Health on 14th July sets out government plans to get rid of attendance allowance and, depending on public reaction, also leaves the way clear to end the care component of DLA.

This will Not Be A Good Thing.

Worse, they intend to give the funding and responsibility to Social Services instead. The examples of Social Services that are unable to find their backsides with both hands and a map are myriad, but even if we were to grant them the impossible benefit of the doubt and assume that they ran it fairly and smoothly... this change can only mean less autonomy and more paperwork for elderly and disabled people who are not always in a position to be able to deal with it, as they attempt to document and justify every disability-related expense that the local authority will permit (and struggle with the ones they won't acknowledge).

Please, join the campaign at Benefits and Work.

Wednesday

Wednesday is my day off, but today, it really doesn't feel like one.

What I'm about to say is going to sound really daft...

Today I have 3 hours of social activity with my PA and you know what? I almost wish I didn't.

Anybody from Social Services reading this, I said almost, and I'm only referring to today...

You see, I have nothing to do.

Steve and I seem to have some sort of bug or whatever and we're both feeling more run-down than usual. I had to go home early from work on Monday and went straight to bed and stayed there. With an effort, I managed work and knitting on Tuesday, but now I'm really shattered and all I want to do is just crawl back into bed and stay put. This removes all of the more physical activities I might engage in during my three hours of PA time like swimming or bowling.

The weather is miserable, so that removes the outdoorsy activities I enjoy like going for a wander-about in this or that park, maybe having a bit of a picnic somewhere pretty, very enjoyable things even when energy is low that just aren't fun when it's persisting it down.

I tried museums and art galleries but I guess I'm just not that sort of person. I do my best to find it interesting and make dutiful comments about how fascinating it is to find out about (insert museum speciality here) but seriously, I'm either falling asleep, or I'm getting a headache from trying to stoke up an interest and absorb tons of information about something that simply doesn't interest me. It's a bit different when I'm with Steve, because he can get excited about the engineering involved, or at the very least, find stuff to photograph in beautiful or unusual ways, and I can watch him.

I have enough library books to last several weeks, and there's nothing at all that I need to shop for.

As Steve isn't currently working, there aren't any out-and-about jobs that I should be taking care of, because he's tackling that sort of thing as it crops up. Which is great, and I am a million flavours of NOT complaining, but at least when I know I have to post a letter or buy a birthday card or something, it gives me the start of the roll of sticky tape.

Also as Steve isn't currently working, and as I've just splurged a month's worth of my own wages on this shiny new laptop (which I have been slowly getting used to since last night), it's not a good time to head to a shopping mall and spend money on things that I really don't need just for the sake of filling up some time.

But I have these three hours and although there's some flexibility, over the course of a month, my PA is supposed to do and get paid for a minimum of the regular approved number of hours.

So I'm sitting here, really not wanting to DO anything, yet trying to think of some sort of activity to occupy myself and my PA. I feel like I'm obliged to come up with some form of entertainment despite only wanting to sleep. I feel like it's a job.

All I've come up with so far is trying to find a nice cafe and sitting there drinking tea and eating cake and knitting or reading or something. But then I feel like I'm wasting the hours I've been allotted.

Google does everything

except a very simple thing I want it to do.

I've spent weeks, on and off, trying to find something to quickly and easily calculate mileage when I'm out with my PA, so that I know how much petrol money to pay her, and I can't do it.

We mostly go to the same dozen or so locations, but not in the same order and not all in the same day. For instance, on week 1, we might go from my house to the doctor's and then to the bank and then to the swimming pool and then to the shop and then to my house. On week 2 we might go from my house to the bank and then to the library and then to the park and then to my house. On week 3 we might go from my house to the shop and then to the doctor and then to the park... you get the idea.

Currently I calculate mileage by typing all the locations into the Google Maps "get directions" thingy, and then confirming which one I mean for most of them, and then making sure all the dots are where they should be, and adding them up. It only takes ten minutes, and it works well because it plots a route that accounts for one-way systems and suchlike, but it's getting tedious because it's always the same places that I'm having to type in again and again and again, and I have to do it on-the-go or as soon as I get home because by that point I'm really tired and I can't depend on being able to remember exactly where we went post-nap.

I played with the google "My Maps" thing and put a handful of my regular locations into a "local places".

What I want to be able to do is open that up and then drag-and-drop the locations I went to on a given day from my "local places" map into the "get directions" boxes, click OK, and get a list that looks like this:

My House to Doctor: 0.6m
Doctor to Shops: 0.2m
Shops to Park: 2.6m
Park to My House: 3.0m
Total: 6.4m

... which I can just copy and paste into the mileage sheet ready to send off to the salary service each month.

I don't understand how there can be a google app to make my G1 look like a Star Trek tricorder, but not one to calculate mileage. Geeks have expenses claims too, right?

More PA Stuff

Wednesday was my second session with my PA. We went to the Pump Rooms in Leamington which is a sort of combination of art gallery, museum, library, tourist information desk, cafe, and function rooms. It was interesting, but in a slightly weird way.

We were wandering around looking at all the exhibits about the history of Leamington Spa, and of course a lot of that is information about, you know, the actual Spa part of it. Some of the more experimental equipment looked downright scary, but a lot of the descriptions made the spa experience seem like a lovely way to spend a day. The Victorian visitors to the spa would drink lots of water (although apparently it didn't taste very nice), and then you'd have a soak in this and a massage with that and a steam treatment over here and then you'd go through to a cooler room and relax on a sort of sun-lounger while someone brought you a drink and a snack. The place was purpose-built and therefore extraordinarily accessible, since a big chunk of the target market would by definition be elderly or infirm and therefore being wheeled about the place. However it is also beautiful, since another important aspect of its function was to be a pleasant and relaxing environment rather than a clinical one. Afterwards, you went across the road to Jephson Gardens to enjoy the gentle recreation and surroundings.

God, it sounded like bliss, the absolute art of relaxation. Which was the weird bit. To be a disabled and kind of stressed-out (don't ask) person, sitting in an accessible hydrotherapy and relaxation facility, which is no longer in use but gets given money to produce displays and information about how fabulous it once was...

I still haven't got the hang of having a PA yet, though. The problem isn't her - she's lovely and doing really well. I just can't seem to get my head around having an employee.

For example. On Wednesday, when we got back from our outing, I was feeling pretty rough, and I wanted a cup of tea. So while my PA brought in the wheelchair, I shuffled through to the kitchen and started trying to make a cuppa. I was visibly and obviously having trouble, and my PA asked if I'd like her to do it. Full marks to her for asking rather than muscling in. But I messed up - I autoresponded with "no, no, I can manage" just like I would if a friend was there.

But my PA is not there as a friend. She's there as an employee. Helping me with the normal stuff (like tea-making) that is difficult or painful for me to attempt to do is not an additional favour that I would be unreasonably demanding of a friend who has already put themselves out for me by taking me out. It is the entire reason she is there and is what she is getting paid for. It is unfair of me as an employer to expect her to stand around like a lemon watching me struggle when she is aware that her job description is to help me so that I don't have to struggle.

I really have to try and get to grips with the whole idea. Intellectually I get it, but in a more immediate sense, it's just... I get through my life by insisting that I am capable of being independent, that I can Do Things, although they might be more difficult or take longer. In my day-to-day life I do any number of things that are stupid or reckless or painful simply because they need doing and no one else is likely to do them - like hanging up laundry or heating up food or washing up dishes - and then I fall over or spill stuff or scald myself or break something - and then I basically yell at myself to stop being such a useless pansy and get the hell on with things. But it gets worse, because then on the occasions when I am offered help, I push it away! For instance, I'm so sick of people assuming that Steve does everything for me and waits on me hand and foot, that I overcompensate in trying to make sure he doesn't do anything of the sort. It's even worse with people I don't know well. Admitting I can't do stuff and asking for help is like doing a DLA form. I hate it. It makes me feel vulnerable. It's also really irrational and I need to find a way of sorting it out.

Good Start

Today was the first day with my new PA and I don't think it could have gone better.

She came round this morning, bang on time, which is always a good start. We spent a while going through the formal paperwork (and hooray for P at the Rowan for making sure I knew exactly what needed doing to each piece), and I also gave her the instructions for what to do in case of those little emergencies, so frequent in my life, that aren't 999 emergencies but involve me being too incapacitated to explain what's going on as the situation unfolds. I'd used an online translation tool to print up those instructions in both English and in her own first language, and she seemed a bit surprised by that, but in a good way. I was a bit concerned about whether it was the right approach - on the one hand, I wanted to be 100% sure she would know what to do in such a situation rather than have to translate as well as cope, on the other hand, I didn't want to seem patronising as her English is pretty good - but it seems to have gone okay.

After that, it was just a question of showing her how to take apart and reassemble the wheelchair and we were off and away into town. Nice and relaxed, we went into a few shops in the generally quite accessible central part of the town. She listened well to advice about how to best tackle certain obstacles (such as the trick of going backwards to get through a door with a lip), and in shops she was really good about browsing nearby without hovering over my shoulder or making me feel rushed.

The weather was gorgeous so we sat outside at the Olive Garden Café and I had some juice and a snack and enjoyed watching the world go by for a bit. Then we went to the park for a wander-around. Turns out this is something we have in common - we both love the sunshine.

I guess it sounds like a strange thing to get excited about. "It was my day off. The weather was nice. I went into town, looked in some shops, bought a couple of things, had something to eat, and then went to the park."

But the really exciting parts, you see, are things like:

• I'm having a bit of trouble with my condition at the moment and usually that would prevent me from attempting to go out unless absolutely necessary, but today it didn't have to.


• Usually at the park I'm feeling grateful and indebted to whoever is pushing me and feel bashful about giving directions (especially when I want to go uphill), but today I didn't have to, I could go wherever I wanted and that was very empowering. Of course I've done that on the scooter, but,


• When I started to feel very unwell and crumpled up, I didn't have to try and find my way back to anywhere, or fend off any concerned passersby, or use up reserve spoons I don't have trying to cope, as someone was there to keep me safe and help me medicate and generally take charge of the situation.


• Once I'd got home and rested, I woke up feeling my version of "normal", rather than having arms and legs screaming from the effort and wondering why I did this to myself just for an amble about. I should still feel alright tomorrow - I haven't overexerted myself for the sake of a watch battery and a cheese and ham panini.

Next week I think I might see about going swimming. I fear that part of me is going to run into trouble thinking of Things To Do, now that I have someone available to help me do them. Suggestions would be very, very welcome.