Disabled Facilities Grant Declined

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
£550 powerchair
£40 wheelchair cushion
£90 crutches

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.

Schrodinger's Cripple

Sometimes I have a hard time getting my head around my illness and disability.  I've been disabled by Ehlers Danlos Syndrome for so many years that living with the constant pain, fatigue and numerous other symptoms has become normal for me.  It's only when I have to take a long hard look at my quality of life in terms of a Social Services care assessment or a disability benefits application that I realise how very disabled I am.  It's quite depressing admitting your weaknesses but it's made me realise that what people see is can be a very different picture to who I really am.

If I post a picture of my dinner on Instagram and say, "I made this, it's so yummy!" you might assume that I am capable of cooking a meal by myself.  What you don't see is the PA who took me shopping for ingredients because I can't drive or get my mobility scooter out of a car on my own.  You don't see how I had to brace my knee and walk with a crutches so I can move around my kitchen, or how much pain and fatigue that caused me.  You don't see my PA peeling vegetables or lifting heavy pans off the hob because I can't do it.  You don't see me resting on my stool because the heat from the hob has made me go so dizzy I feel like I'm going to pass out.  You don't see me pushing myself past my limits through the pain and fatigue or the muscle spasms in my hand as I chop and stir.  You also don't see after taking that picture I feel too exhausted to eat the meal I just claimed to have made.

In my head I believe that I made the meal because I planned it and I oversaw the cooking of it but in reality if I had to make it from scratch on my own I wouldn't get past the first step.  Did I just make that meal?  Yes, but not really.  It's not as simple as yes or no.

Herein lies the problem.

Physically disabled people today have to be Schrödinger's cripple - there is an expectation for you to be an awe inspiring role model, a paralympic  athlete or successful entrepreneur bravely defying your physical limitations, but at the same time to get any kind of help from the government in terms of disability benefits or social care you have to be a invalided cripple who can't wash, dress or even convey food to your mouth, otherwise you get no help at all.  Very few people can be both but just because you can do some things doesn't mean you don't need support in doing others.

I currently claim DLA, Disability Living Allowance but some time in the near future I will be migrated to PIP, which has a different eligibility criteria.  The amount of money I receive each week could drastically change, I could get nothing at all or I could get almost £60 a week more.  I have no idea which, that is entirely up to the decision makers.  This is a great cause for concern for me because I rely on that money to provide the medical care, equipment and support that is not available to me on the NHS.

I looked up the eligibility criteria for PIP.  It's all done on a points system and it's very black and white. My condition changes on an hourly basis so I find it impossible to say if I can perform certain tasks such as taking a shower or walking a certain distance because they are dependant on many variables and fluctuations of my numerous medical conditions.  If I can do something one day there is no guarantee I can do it the following day, or even the following week.

To get the enhanced rate of the mobility component of PIP you must be able to walk less than 20 metres. How far can you walk?  This might seem a simple enough question to answer but for me it quite complex.  You might see me walk 20 metres on crutches from my PA's car into the GP surgery and think yes, she can walk 20 metres, but that is not the whole story.

You don't see how much pain and fatigue that caused me, you don't see how I had to make a maximum dose of pain killers and muscle relaxants when I got home because I pushed myself beyond my limits to walk that distance.  You don't see the damage I did to my unstable shoulders by using the crutches or the pain I will suffer for the next week because of it.  You don't see how I had to order pizza that night because I was too fatigued to even make a sandwich for dinner.  You don't see how I felt too ill to do anything the following day because I overexerted myself from desperately trying to be normal and independent and walking instead of  using a wheelchair or mobility scooter.

If the decision makers decide I can walk that 20 metres I wouldn't score enough points to get the Enhanced rate of PIP mobility component.  In real terms that means losing £1,853.80 a year in benefits (or nearly £3,000 a year if they decide I can walk more than 200 metres) plus no longer being eligible for a Motability vehicle.  That is a massive loss if you're struggling to survive on benefits or rely on the Motability scheme to be able to run a suitable car and retain your independence.

Iain Duncan Smith wants disabled people to find jobs and work their way out of poverty.  He doesn't seem to appreciate that not everyone is capable of working, even with reasonable adjustments.  You might presume I can work because I wrote this blog post but it has taken me several days of short sessions at the computer to compose this.  If I were writing professionally I would be expected to produce this every single day, but even if I worked from home there is no way I could do that 5 days a week to an acceptable standard.

The government believe that working can help people with chronic illnesses but for people like me the physical stress and effort would make my condition deteriorate to the point where I would be bed bound and have very little quality of life.  I struggle with just looking after myself, never mind working enough hours to earn a living wage.  Leaving the house just to go to the shop on my mobility scooter can leave me so fatigued I can't do anything for a few hours and there are days when I'm not capable of doing anything at all - and that's when I'm well!  If I get a virus or an infection which can happen up to 6 times a year, then I could be bed bound for up to a month.  Just getting out of bed in a morning is work, never mind having a shower, getting dressed or doing a few basic household tasks.

This leaves me and thousands of other disabled people in a very difficult position.  On the surface we appear too well to need financial or practical support but we are too sick and disabled to function without support.

What we need is understanding and support so we can manage our conditions and live a happy and productive life.

What we don't need is constant scrutiny, sanctions and the withdrawal of benefits and support services by people who have no understanding of what it's like to live with a long term illness or disability.  We don't think we're entitled, we don't want to be benefits scroungers but with the right kind of help and support some of us might just surprise you and actually become that awe inspiring Schrödinger's cripple.