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.

Indoor pot holes, mobility scooters and the public perception of disability

I've read a lot about disabled people being dicriminated in the press.  If you use a mobility aid or claim disability benefits then you're obviously a faking scrounger who is too lazy to go to work.  I considered myself lucky, I'd never had any kind of comments like that made about me until I had a minor accident in my local Post Office

On Thursday 24th October I went into Worksop town centre with my personal assistant and two of my children.  I visited the Post Office on Newcastle Avenue.  Even though it's the main post office in Worksop it is actually a sub post office, a privately owned business contracted to do Post Office Ltd. business.

When I entered the shop I was surprised to find it in a state of disrepair.  Several floor tiles were smashed, with fragments of tile on the floor.  It looked dirty and untidy but I didn't expect what happened next.

I drove my three wheel mobility scooter across a rug on the floor when my scooter suddenly lurched forward and jolted to a halt.  I was stuck in a hole in the floor!  I eventually managed to reverse out of the hole and my PA lifted the rug to find a significant hole in the floor.  The tile was completely smashed the concrete underneath was crumbling away and there was gaping hole in the floor!  I was lucky not to be injured.

Thankfully my scooter was not damaged so I queued up at the counter, bought my stamps and asked the clerk if I could make a complaint about the floor.  She didn't seem that concerned and took my name and address to pass on to the owner.

I was concerned that someone might injure themselves falling in the hole, so when I got home I telephoned the Post Office customer services.  They basically told me the Newcastle Avenue branch was a privately own sub post office and not their responsibility.

They didn't seem keen to take any action about the hole so I telephoned the local newspaper, The Worksop Guardian.  I told my story to a reporter and I emailed him the photographs I'd taken on my phone.  Later that day the story was published on the Worksop Guardian website:

Woman on mobility scooter falls down hole in Post Office on Newcastle Avenue

Local newspapers are infamous for getting the facts wrong but I think they did my story justice, and they even spelled my name right.  I was pleased with the final paragraph about how the Post Office was now dealing with the problem.  That was the reason I went to the press, to get some action and to stop anyone else falling in the hole.

I thought I'd done my civic duty.  I thought I'd done the right thing.  I guess I was naive because I didn't expect the all discriminatory posts made by trolls on the Worksop Guardian Facebook page.  Here are a few of the comments:

The story about a hole in the Post Office floor had turned into an attack mobility scooter users and my motives for reporting the hole!

I was offended by the insinuations that I did it for compensation.  The thought never crossed my mind. I was not injured, my scooter was not damaged, I just wanted to warn people about a potentially dangerous hole in the floor that had been hidden under a rug.  Was that wrong?

I was disappointed by the attitude towards mobility scooter users.  When did it become acceptable to publicly question people's disabilities?  I appreciate it can be confusing for people when they see a disabled person walk a short distance and then get on a scooter.  They might jump to the conclusion they are lazy or even faking a disability, but the truth is that you don't have to be paralysed to use a scooter or wheelchair.

There are many conditions that cause significant pain and fatigue to walk more than a few yards, but it is also important to maintain fitness and mobility to stay healthy.  I walk as much as I can.  There are days when I can walk short distances and there are days when I cannot stand at all.  There are days I can get around on my mobility scooter and days when I am so ill I need to be pushed in a manual wheelchair.

I am not faking it.  I am not lazy.  I am struggling with several chronic health problems that make it difficult for me to stand and walk.  I struggle with pain and exhaustion every day and I am very disappointed that the general public see me and my scooter in such a poor light.  I wish I could educate these people on what me and other disabled people go through every day.

I shared my feelings on Facebook.  A good friend of mine reminded me, "Local paper comments are where trainee trolls go before they get a bridge to live under."

Always remember kids, don't feed the troll!