The Unspoken Costs Of Living With Disability






Today’s post comes from another blogger called Lilly Cook who runs a site called She is a huge inspiration, and I really hope you check out her site! I asked her to write about the financial challenges she faces as a disabled woman – as she says, it’s not fair that she should have to pay for all the extra equipment and adaptations she needs just because she has cerebral palsy.

Thankfully there is help out there, but you often need to fight for it. Preparing for emergencies is a good place to start, as we cannot ever be sure if we will need time off of work for injury or illness. The next step would then be to have an iron-clad budget and stick to it as much as possible. Benefits are sadly quite limited, so making every penny count is essential!

I really hope you enjoy today’s post – Lilly is amazing, and I’m really honoured to have her writing for me today!

I’m Lilly Cook, aka the Journalist On Wheelz!

I’m a young woman with Cerebral Palsy. I use a wheelchair to get around outside and unfortunately because of my disability my family and I do sometimes need to deal with unexpected costs.

We’ve had to pay out for equipment such as wheelchairs, physio equipment, etc. so as you can imagine it can sometimes be very expensive, not that I agree with it as no one asks to be born with disabilities, so why should we have to deal with the extra costs that comes with it.

My Expenses

To illustrate what I am working with, I’ll break down my expenses and income for you.

My Income – I get £508 per month through disability benefits

Household bills and travel costs per month
Due to my disability, the bills I have can sometimes make it difficult to make ends meet:
£160 electricity
£13 tv license
£13 water
£80 food
£13 council tax
£30 I go through a lot of shoes due to the way I walk
£200 travel as it not easy for me to use public transport (absolutely my biggest expense – more on this later!)
£36 Personal care including shower essentials and boxes of pads
£20 Laundry
Rough overall speed: £565
I make a deal with my Mum and Dad. They pay flights, accommodation and food. I find my spending money.
Because I’m part of a large family we normally try and book our holiday, quite soon after returning as we like to have time to get the money together.
I do treat myself in the way of clothes shopping which is every ladies dream. I also go to the nail shop or buy audiobooks from audible, but these things only happen once in a while. So I love it when they do!

Help With Travel

My disability makes it difficult for me to use public transport so I have a freedom pass, which gets me around London for free.

Yes, that is a good thing! However I can’t use public transport easily due to the practicalities.

So here’s what I have to do: I have something called a Taxicard. I won’t go in to this in too much detail as I have an entire post on the Taxicard scheme that you can read.

Now I’m on the subject I’m more intrigued. So I’ve taken the opportunity to ask some of my friends with disabilities to find out their opinions. So let’s meet them.

no one asks to be born with disabilities, so why should we have to deal with the extra costs that comes with it

Sam Ingham’s opinion 

My disability is called hereditary motor sensory neuropathy. In layman’s terms this means my nerves that are attached to my muscles are slowly shutting down and one day I will awake and not be able to feel my legs.

At the moment I am dependent on my family for feeding me and if I am going places where I am going to eat out, as my hands have deteriorated massively in the last two years, to the point where I was feeding myself, dressing myself and able to lift a cup, to now where as I said have go to be fed, sometimes helped with dressing and sometimes personal care.

I’m not going to lie it was very difficult having to adjust from doing everything myself to having to depend on everyone around me as I love to be as independent as I can, but I’ve had to adjust to asking people for help and learned that it’s ok to want to ask.

As to the financial side of things, my family really help me with this as I’m not the best with money situations so my mother, who is my primary carer, deals with the financing within my house. The only thing that I believe that I pay out for myself is if I get cabs or use a Taxicard which allows me to use my electric wheelchair out and about and doesn’t cost as much to get from A to B.

If someone was in the similar situation to me I’d tell them to not give up. Yes, there are days where it can be very tough and stressful, but as long as you surround yourself with positive people that are going to support you and be 100% real with you about life and everything then that’s all you can do. Definitely have a positive outlook on life and if you have something you want to achieve in life don’t let your disability get in the way of that. Never let anything limit you because the day you let something limit you is the day you should give up all together. I know it sounds harsh but I’ve always been told that letting your disability get in the way is just an excuse. Never give up. Push through and achieve what you wanna do.

Camille’s opinion

My disability is quadriplegic athetoid cerebral palsy which means I haven’t got fine motor control of my limbs. I’m a full time wheelchair user, but with normal intellectual ability. With having cerebral palsy, I receive Disability Living Allowance (DLA) and incapacity benefits.

My tips and advice would be: make sure you receive what you’re entitled to get, have regular assessments for your physical needs and home environment.

There is financial support out there. You tend to have to be a bit pushy. Having a little extra support than you initially need isn’t a bad thing, as you may need it in the future. Remember only you know yourself more then anyone.

I hope this blog gives you a helping hand and tips.

Thank you so much to Lilly, Sam and Camille for giving us an insight into the financial implications of having a disability. As they have said, there is help out there, so make sure you go out and get it!

I wanted to add that the benefits that Camille spoke about are now being phased out and are being replaced by Personal Independence Allowance (if you are aged 16-64) and Attendance Allowance (if you are aged 65 or over).

Citizen’s Advice have a resource to help you find out which benefits you could be entitled to, and Scope have a helpful resource on how to apply for charity grants. There is a huge list of charities, so check them out and see if you can find some extra help.

Until next time,

Dr Nikki x

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2 thoughts on “The Unspoken Costs Of Living With Disability”

  1. Hi Ther to the team.
    Myname is Christopher Carstens and I read about the untold stories and bills of a CP child,and wanted to firstly say thank you for sharing as it is really an eye opener to many of the facts surrounded by having special needs children or even being one. I stay in South Africa and also was badly hit by the Covid 19 pandemonia but thank God never had to suffer the effects of the desease neater my family, but what I would like to ahare with you tody is my two beutifull children and also special needs children. My eldest daughter was born early and due to the oxegen levels not being 100 percent correct she was later diagnosed as Cerebal Palsy and could not walk due to the severety of her condition she was permananently wheelchair depending and needed assistance in everything g she wants to do fiscally. We where told back in 1979 that she has a lifespan of maby 10 years but today she is 41 years old and still very alive and able to enjoy life as it is a gift from God, but nobody know the cost of having a special needs child is so much and sometimes very burdensome as we did not allways have money to pay for ops, equipment, ect. This is indeed my blessing ti have her in my life and I was not only blessed with her but a son and a younger sibling thats all grown up and out of the house living her own life. My son on the other hand was also a special needs person and is 36 yrs of age staying with us. His condition is Hydro Caphelus and Autistic so with our two older kids we had the challenges of life as a father and mother to them. Both our children has Bipolar and need medical help continueassly but we have gi en the best years of our life to them and as we growing old we had to face the Covid Pandemic and happy to say we kept them safe and ourself but because of that we had to give up our jobs and depend on social grants to pay the bills and as you can testify those bills are not the everyday bills of a normal household and many times we have to depend on outside help just to get by on a monthly basis. I’m so happy to find a site where I could just chat about my experience as a father living with special needs children and honestly speaking if I had a choice of starting over into a different setup I’ll rather do it all o er with what I have today as my help came not from mere man but from God Allmighty and the memories I have with my children can never be replaced with a normal household. Thank you for this oppertunity to chat God bless you all
    CJ Carstems
    [email protected]

    1. Oh Christopher, thank you so much for sharing your story. I can’t begin to imagine how life must have been at times. I’m so glad that you’re children are safe and well and that you’ll all ok in these current times. Sending you lots of love and best wishes. Nikki x

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