Working as a disabled person, not as simple as just having a job

In many ways I was lucky, I become disabled whilst I was already in a job, I was able to negotiate reasonable adjustments and stay in the same role. In the last year I’ve had a few more health issues and staying in work has become more complicated. I now need a new wheelchair and a new home.  It sounds straight forward, go to NHS wheelchair services and get the wheelchair that fits my needs and, as both me and my husband work and we can afford a mortgage, buy a home that better fits my needs. Only it’s so much more complicated that that.

A year ago I was referred to Wheelchair Services by the Occupational Therapist I was seeing at RNOH Stanmore whilst inpatient. 6 months later I had an assessment, and found out they don’t provide wheelchair vouchers for powerchair users. Once we’ve moved to a house that is wheelchair accessible they will provide me with a basic powerchair, but they won’t consider my work needs. I’ve also had an Access to Work assessment, they will part fund the right wheelchair once we have moved house, but we would be liable for at least 3/7 of the cost. Access to Work will only fund equipment like wheelchairs for the days you are working, and expect you to pay for the days you are at home. Even a person in full time work they would be expected  to pay 2/7 of the cost. What many people are able to do is to use the wheelchair voucher provided by their local wheelchair services to fund the part Access to Work expect you to pay for home use. I don’t have that option as my local wheelchair service do not run the Wheelchair Voucher Scheme, that leaves us liable for thousands of pounds of part payment towards the wheelchair I need to keep me in work.

All this is irrelevant if we don’t have a home that is wheelchair accessible, or can be made so. For those that haven’t read any previous posts, we presently live in a 2nd floor flat with no lift. To get myself in and out of the flat I have 3 and a half flights of stairs to navigate on gutter crutches.

3 flights of stairs

Not only is this exhausting, painful and dangerous it is also having a negative effect on my health; or as my consultant wrote in a letter ‘causing a significant worsening of her condition’.

I could refuse to climb them but then I’d be housebound and lose my job; so I grit my teeth, take the morphine and push on despite knowing it’s making me worse.

Even with both my husband and I working and a not insignificant amount of equity in the flat we presently live we can’t afford to buy the home we need. Our first port of call was to register with Help To Buy and apply for their shared ownership scheme. We had no problems being accepted but in the last 6 months there has been less than a dozen properties available, almost all flats without suitable access or parking or a couple of houses that also weren’t suitable, due to lack of downstairs toilet or unsuitable for fitting a stair lift.

As Help to Buy have nothing, we turned to the Home ownership for people with long-term disabilities (HOLD) scheme, a shared ownership scheme for disabled people who can not find a suitable home via the Help to Buy shared ownership schemes. We qualify for that but it turns out not only is funding more limited that we were led to believe, almost no mortgage lenders will  lend to us. Supposedly you can buy between 25% and 75% and pay rent on the rest of the property. However, there is only £98,000 of funding available, which isn’t going to buy half a bungalow, might buy half a flat (if you could find one suitable) in the South East  of the country, but definitely not 75% of a property. The other issue is we can’t find anyone to lend us the money even though we already have a mortgage that we have never missed a payment for and we meet the affordability criteria. The only reason they will not lend to us is that the Registered Provider (e.g. Housing association) is buying a property to suit my access needs rather than selling us one from existing housing stock.

At the same time as applying for the HOLD scheme we applied to the local council to join the housing register. Initially they rejected our application as they completely ignored the medical declaration form and letter from my Consultant. After reconsideration, and actually looking at the information about my health they accepted us but we only got 20 points and are in band 4 out of 5 until October when we go up to band 2. This is despite our present housing being not only inappropriate but also detrimental to my health and they have that in writing from my medical professionals.

The longer I have the mountain of stairs to get up and down the more it puts my ability to work and my health at risk. That doesn’t seem to matter to anyone. The longer I have the stairs to navigate the more likely my present neck problems become permanent, the less likely the physiotherapy I’m having is going to help, the more likely that work becomes impossible.

Even if we get housed by the council the issue of wanting to continue working doesn’t stop. I spoke to the council housing department explaining that as a reasonable adjustment I work from home for part of the week. I also explained that I require a proper ergonomic computer and desk set up, particularly as having Ehlers-Danlos syndrome I am more susceptible than most to RSI and other injuries. I asked if we could be allocated an extra room so that I would have space to work from home, I was told I would be expected to have a table in the corner somewhere and that the space the equipment took up was my problem and between me and my employer.

We keep being told that those disabled people who could work, should, but it’s so much more complicated than that. I’m desperate to keep working, but the obstacles put in my way are seeming more and more insurmountable.


8 thoughts on “Working as a disabled person, not as simple as just having a job

  1. Leese (@Leese72) June 16, 2015 / 7:37 AM

    Hooboy, do I empathise with this as a fellow EDSer. And then even when you *do* get AtW to fund the equipment you need, you’re counting on your employer to actually implement it, which some simply can’t be bothered with, which is what happened to me in my last job despite all the funding being in place – months of being fobbed off and an eventual admission that my line manager lost the letter with the recommendations and equipment listing in it. I actually ended up having to leave because continuing to work without the equipment caused me so much pain, and had to take them to tribunal.They settled beforehand, but that’s not the point. I’d rather have kept working.


  2. h4rrish4wk June 16, 2015 / 9:39 PM

    Reblogged this on An Autist Human and commented:
    This is a big issue, another issue is if you’re NOT already in a job when you become disabled or if you were born disabled because often times you can’t find an employer in the first place willing to make reasonable adjustments so you can do the job when they could just go out and hire someone they don’t have to accommodate more than anyone else for.

    These issues make people’s anger and nasty rhetoric to people who are disabled and on benefits even worse – because the fault just DOESN’T lie with the disabled person – and we’re still getting the blame.


    • Millys Move June 16, 2015 / 9:55 PM

      I agree, that’s why I started with saying I was lucky I already had a job when I became disabled, that first hurdle was already jumped. I’ve come across many disabled people who would like to work by can’t find an employer willing to employ them and make the reasonable adjustments they are legally obliged to do; even if they are the most suitable for the role. If I ever lose this one, I doubt I’d ever find employment at the same level again.

      Liked by 1 person

      • h4rrish4wk June 16, 2015 / 10:12 PM

        I was born disabled (aspergers/autism spectrum, dyslexia, dyspraxia, clinical depression that presented very young) and several other medical issues are starting to join in that might be other disabilities starting (fatigue, chronic pain etc). I’d need to work from home if I have any chance to both work and look after my son – especially as things get harder – but the chances of me getting ANY job from home (that’s actually IN the home not ‘walking door to door on “commission”‘) is EXTREMELY unlikely – my disabilities being ignored in school as well as no teachers sticking to education plan landed with me leaving with no qualifications because of dropping out. So – I’m basically SCREWED – even though I’d LOVE to work.


  3. Spoonydoc June 21, 2015 / 10:50 AM

    Been there, done that. My own wheelchair services wouldn’t provide a wheelchair at all because i could “walk a few steps”, no matter that I had got to the point that I couldn’t leave the house anymore. I had to buy it myself. Luckily I managed to get half of it funded by work after a prolonged battle.

    Before I could buy the wheelchair I had to find somewhere more acccessible to live. This took a while. I needed to go into privately rented accommodation as didn’t qualify for social and wouldn’t get the wheelchair accessible places until aged over 50 (yeah, I know!)…
    I was very lucky and found a ground floor flat with almost level access. It took a further 2 years to get the council to sort it out, during which I bumped my way in and out up the single step with a curb climber. Had a few accidents but at least I could continue working.

    Despite all this I consider myself lucky. I did find a job I could do. I did miraculously find an (almost) accessible private let. I did have enough savings to buy my wheelchair. There were a number of other fights too along the way, but this is enough to discuss here.
    You’re not alone in what you’re facing. Mind you, I don’t know if that makes you feel better or worse!

    I remember how hard it was at the time and I thought I was never going to get out of my situation, and remain housebound forever. Things worked out in the end and I hope they do for you too, however hopeless it feels right now.
    I wish you strength to face these completely unnecessary obstacles and hope that suitable accommodation will present itself soon, perhaps with the shared ownership scheme (from what I read, that seemed your best bet?).
    All the best.


    • Millys Move June 24, 2015 / 12:45 PM

      Thank you Sarah, it is greatly appreciated. Like you say, not sure if it’s better or worse knowing I am not the only person in this predicament. We did think the shared ownership scheme was our best bet, but we are having some issues getting a mortgage as it’s a specialist scheme for disabled people, and most lenders do not want to know. I’ve got some more phone calls to make and letters to write.


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