My OT says I need a stair lift.
I've struggled on the stairs for the last 20 years but it's not something I've actually thought about, mostly because I am not some frail white haired granny, I'm a curvy lady in my early forties with bright purple hair. I am in denial about how frail EDS makes me.
Two years ago an OT told me I needed a stair lift. He said I could apply for a Disabled Facilities Grant from my local council but because my husband was in full time employment earning above the average wage he said we had no chance of getting one. He also said getting a stair lift to fit the 'U' shaped stairs in our home would cost £9,000.
Nine grand for a stair lift!!! Needless to say we didn't take the matter any further.
My current OT insisted that I really do need a stair lift. I am not safe walking up the stairs, it is not acceptable for me to crawl up the stairs or slide down on my bottom. She encouraged me to complete a provisional test of resources form for a Disabled Facilities Grant.
A Disabled Facilities Grant is given to disabled people by their local authority to cover large aids and adaptations to their home such as ramps, accessible bathrooms and stairl ifts. If you are on a means tested benefit you automatically qualify for a full grant but if you or your partner is working then they take the salary into consideration and calculate what contribution you would have to make towards the grant. That sounds fair enough, right?
The problem is the grant is for people on a low income and my husband earns a little above the national average wage. We're not poor but we couldn't afford to take out a loan for £9,000.
Last week I got a letter from the council telling me that they have cancelled my application for a Disabled Facilities Grant because our contribution was greater than the cost of the works. I thought this was a little odd because I haven't actually had a quote for the cost of the works. I phoned them up to find out why we'd been declined.
Apparently they had looked at our form and based on my husband's salary they had decided that we could afford to make a contribution of £25,000!!! I was gobsmacked. To put that in perspective that is 75% of his annual income. We are not poor, but there is no way we could borrow that amount of money.
Today I spoke to my OT on the phone. She suspected that we'd get turned down but was surprised at the contribution amount. She was quite frustrated, she really wants to help me but there is nothing more she can do. The only thing she could suggest is going begging to charities.
The most frustrating thing for the OT is that my situation is not unique. There are many younger disabled people (i.e. not pensioners) who need adaptations but because their partner works full time they have to fund thousands of pounds worth of work themselves. This doesn't really seem fair when non-disabled people can spend their wages on nice cars and foreign holidays but if you are unlucky enough to become chronically ill or disabled you have to pay for everything.
I expressed my frustration to my OT. Yes, I do get some money to help with the extra costs of living with a disability. I claim Disability Living Allowance (I haven't yet been migrated to Personal Independence Payments yet). I get £21.80 per week for my care needs and £57.45 per week for my mobility needs. That money doesn't go very far when you consider my spending.
£600 mobility scooter
£40 wheelchair cushion
Plus I'm looking at paying £300+ for a knee brace because the NHS can't help me. I also have to pay £104 a year for my prescriptions, then more money for my vitamins, supplements, Xylimelts for my Sjogren's, High5 Zero tabs for my POTS, kinesio tape to keep my hypermobile joints from wandering out of place, gym ball, therabands and weights for my physio, £15 for a mandatory eye sight test due to the medication I'm on, £85 a year for dental checks and to stay registered at the private dental practice (more if I need work doing due to the damage that Sjogren's does to my teeth). The list just goes on and on and on!
So it looks like there will be no stair lift for me. I will have to learn to live with the pain and exhaustion, the crunching of my knee with every step, the wobbles, slips and falls because my local authority doesn't have the funding to help people like me. Apparently work doesn't pay if your partner is disabled.