I am currently waiting for work to start on a new downstairs extension in my house which will give me a downstairs bedroom. This is going to cost somewhere in the region of £50,000, plus any unforseen extras. It put me in mind of a post I wrote a while ago about the ‘hidden’ extra costs of having a disability.
I’ve dusted it off, and realised how true this is, even now. I’ve made some adjustments based on what I now know, and offer it to you today:
I recently read the interim report from the Extra Costs Commission, which was set up, in response to a 2014 report from Scope – Ending the financial penalty of disability by 2020.
The commission looks for answers to the fact: Life costs more if you are disabled.
Scope’s research suggests that on average, a disabled person will spend £550 a month, purely on disability related products and services – products and services that non-disabled people will not have to purchase.
Whilst the government has attempted to address these extra costs by focusing on raising the income of disabled people through the welfare system, results are mixed, particularly now with disabled people facing huge cuts to welfare rights and services.
Disabled people and their families face expenses that their non-disabled counterparts don’t, and this extra cost prevents disabled people from playing a full part in their community or society as a whole. The commission’s research shows that 69% of disabled people are falling behind with bills or other commitments.
The commission also found that THREE QUARTERS of disabled people and their families have left a shop or business because they were so badly treated, although i’m not discussing that here.
When I first saw the headline figure of £550 / month, my initial reaction was that’s too high; I don’t spend that much. But when I started to look at the expenses I have that are different from my non-disabled friends, the number adds up quickly, and I consider my needs to be relatively light. For instance:
- For the privilege of getting into my own house, I need a ramp and new door. Cost: £3K.
- My extension, which would allow me to get into my bed at night, will cost me upwards of £50K
- I currently have to take several different tablets on a daily basis, bringing my annual cost for meds to £380+. I use the prepayment card, so it comes in at just over £100. Not too bad, however, the main tablet that keeps me standing / working is currently being reviewed to see if it will still be funded by the NHS. When they decide not to fund it – and they will – that will bump my costs up closer to £2K.
- Wheelchair – £2k (and that’s cheap!), although the NHS has made great strides in this department, and my most recent chair was free (yay!).
- Motability car (I will discuss the ‘free’ issue later).Hand controls which need replacing every 3-5 years: £2K
- Level access shower (who doesn’t want to shower? – I had strip down washes for five years). Cost: £4k
- Speech software to allow me to continue writing: £500 approx.
Anyone keeping a tally? I haven’t even got on to needs that many other disabled people face, such as higher heat costs (as a result of needing to stay warm), or specific foods, higher cost of insurance, lower pay, specialised transport, etc etc…
I know there are some people that think I have it easy – In the past I’ve been told ‘it’s alright for you, you get everything given to you.’ I’ve also been called ‘benefit scrounger’. Let me address those points first:
‘It’s alright for you’ – I have MS. Please explain to me how losing the ability to walk, or talk, or think clearly, or remember, or how living every day with chronic pain is ‘alright for me’.
‘Benefits scrounger’ – I have never been unemployed a day in my adult life (43 now). I claimed DLA (Disability Living Allowance)for ten years and now PIP (Personal Independence Payment), which is the government’s way of saying that my costs of daily living are higher. The percentage of people that are claiming DLA (or PIP) when they shouldn’t be is low. Very low. An Ipsos Mori survey revealed that although the general public believes fraud to be a 24% of the total benefits bill, the reality is just over 1%. These figures are based on figures published by the Department for Work and Pensions.
‘Free car’ – I do get a car through the excellent Motability scheme. The car is taxed and insured each year, and I get RAC support. For this, I lose all of the mobility element of my PIP, which is approx. £240 per month, so not truly free. I couldn’t live without my car – I would be stuck at home (public transport is hit and miss and too far from my house), I couldn’t work (I am a community worker). I DO have to pay for the hand-controls (see above).
‘You get the council to do it’ – well they will, but after a means test for my upcoming extension, my contribution is £15K. This is because I spent the previous years saving for this extension, so I have some money in the bank. No savings could have given me an extra £15K from the local authority (grrrr).
If you would like to read the Commission’s full report, please visit http://www.scope.org.uk/campaigns/extra-costs-commission
I would very much like to hear your views on disability, if you agree or disagree with anything I have said.