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.
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.