WE are living in a culture where being disabled costs money.
Most people will understand that those living with a disability that makes it difficult to find a job, or full time carers who have no employment options, will face stern financial challenges.
However, what is less well known is the cost of the modifications and extra items needed just to maintain a degree of independent living.
The disability charity Scope has just launched the Extra Costs Commission, a year-long independent inquiry that will explore the extra costs faced by disabled people and families with disabled children in England and Wales.
Although Scope estimates that the “living costs premium” that disabled people face totals £550 a month – considerably more than the average of £360 they typically gain through Disability Living Allowance – the charity aims to get an idea of just how much disabled people have to pay out to maintain their independence.
Residents in Chester, Flintshire and Wrexham are encouraged to take part.
Stuart Steen, 65, of Ewloe, has previously spoken to the Leader about his passion for art. He regularly campaigns and fundraises for different charities, including Parkinson’s UK and Flintshire Disability Forum.
Mr Steen was diagnosed with Parkinson’s Disease, a degenerative condition that affects nerve cells in the brain and affects motor ability.
He said: “I continued working as an engineering consultant even after my diagnosis, so I managed to work for 40 years. Many people don’t have that opportunity.
“I was 57 when I had to give up work.
“I am on seven drug types, I take 36 tablets a day and I have to medicate every four hours.”
Although he initially continued to work, Mr Steen immediately considered making modifications to his property. The costs were greater than many would expect.
He said: “I paid for the modifications out of my own pocket. The most urgent thing was to fit banisters and a rail that would allow me to move around the house. I now have a walk-in shower and I bought a mobility car with automatic gearing.
“When I was diagnosed, I made a conscious decision to take these measures to make sure I could carry on doing what I needed to do.
“To give you an idea of what I was looking at, the council charged £1,000 just to have the kerb outside my house lowered. I knew at one point that it would become difficult for me to reverse, so I modified the drive. That cost £600 as well.”
Mr Steen faces his condition with humour and determination.
He said: “When you are diagnosed, your world falls apart. You have the choice to curl up and give up or to carry on. It took me a long time to come to terms with it and even longer for my body to get used to the drugs, but I like to keep a positive mindset.
“That’s the reason I do art. I’ve made some sun catchers for St Kentigern Hospice (in Denbighshire).”
Robert Hindle Fisher, chairman of the Extra Costs Commission, wants the Commission to detect companies who overcharge disabled people, but also encouraged residents to shop around for the best deals.
Back in the late 90s, when Mr Steen was first diagnosed, information was not readily available and even now the internet has expanded exponentially, it can be difficult to know where to look.
He said: “I went to the Citizen's Advice Bureau. They were very good and laid it all out. It was no good asking doctors or health workers.
“I would encourage people to plan ahead, if they can, and make the modifications as soon as possible. It will only cost more in the long term."”
Mother of two, Kelly Lloyd, 30, of Aston, pointed out that the costs can mount up even when the items being bought weren’t for specialist modifications.
Her young daughter, Brooklyn, aged seven, has complex needs, as she has a form of liver disease, is prone to chest infections and has autism, as well as having severe dermatitis.
Miss Lloyd said: “I’m a full time carer for her.
“Obviously we get help in the form of carer’s allowance, but it simply doesn’t cover the costs, which can be ridiculous.
“For instance, she has problems with incontinence. We have an allowance on the NHS which provides some pads, which works out at four pads a day. She’ll often get through twice that. They are £7 for a pack of 14 – they’ll be used in just two days."
Clothing is also an issue, Miss Lloyd only buys her daughter pure, lightweight cotton as heavy and artificial fibres aggravate the skin condition, making it uncomfortable and even painful.
Sourcing and paying for the clothes takes its toll.
She said: “We don’t really have time to shop around. Caring is a 24-hour-a-day thing. It’s very rare we can go hunting for new items and then I’m juggling between two children.
“The thing is, we have no option but to buy these things and companies know we have no option. They can charge what they please. There are charities that help, but because they are charities they don’t always have enough funding.”
A mother from Holt, who asked not to be named, pointed out that even so-called “invisible disabilities”, such as mental conditions, can have an impact on finances.
She said: “One of my sons, who is nine, has a phobia of germs which affects his eating. If something happens to affect him, for instance if someone burps at the dinner table, he won’t eat the meal and I have to start from scratch. The costs mounts up.
“My other young son is autistic and will only eat certain brands. You can’t fool him – I’ve taste tested other brands and he’ll only eat Heinz ketchup, for instance. So when the wrong food goes in the bin, it costs us.”
See full story in the Leader