Do you have extra costs because you or your child is disabled?

Former_MSE_Aileen · 11 September 2014 at 10:38AM

Disability charity Scope UK is looking into extra costs faced by disabled people and families with disabled children. It’s asking for your experiences and how these costs affect your life and financial situation. With the evidence it receives, Scope will make recommendations to the government and businesses to reduce these costs.

Submit your story by completing Scope's online form before Fri 26 Sep, and click reply if you want to share here.

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pinmoney · 18 September 2014 at 10:01AM

Its not just about the expense of equipment... Since both my mother and father need to use a wheelchair to go shopping, its about finding those disabled parking spaces that someone has not carelessly popped into as they are only gonna buy a packet of fags... mother and child parking spaces abound but the disabled spaces always fill up first. Our local Tesco supermarket doubled the number of M&C spaces, but left the same number of disabled spaces even though there is usually a que for them. There is an issue in finding a place to cross a road, there may be a sloped pavement provided but more often than not it is so carelessly laid that you cannot push a wheelchair up or down smoothly, and quite often access ramps provided are quite steep and require herculean strength to negotiate. Most people are quite kind and step out of the way with a smile, but the shopping isles tend to be quite narrow, with hazards such as pillars and staff trollies left carelessly and even display shelf units across the ends of isles! which makes it very difficult to turn around, and sometimes even to get to the shelf that she wants to look at. Shops provide lifts - great, but they are nearly always quite a hike away from where you want to get to. Tills are another negotiation skill, especially when paying by card, as the readers are not easy to get out of their holder and the chord is never long enough. Shopping with a full wheelchair and disabled basket combo is quite an eye opening experience and i would recommend that shop managers are required by law to negotiate their own car parks and stores so that they have first hand experience of the difficulties.:mad:

Indie_Kid · 18 September 2014 at 10:13AM

I think youre missing the point. The thread was asking about extra costs and not barriers.

dori2o · 18 September 2014 at 12:54PM

The booklet on the website is an interesting read.

Link here:

https://www.scope.org.uk/publications/priced-out

lynnemcf · 18 September 2014 at 1:00PM

My DH has just been fitted with custom made shoes due to a problem with his left foot. However, it seems that he is only allowed one pair of shoes on the NHS, and to buy a second pair is almost £500. Wish I could find out more about his rights to have more than one pair of shoes!

Ms_Chocaholic · 18 September 2014 at 1:03PM

lynnemcf wrote: »

My DH has just been fitted with custom made shoes due to a problem with his left foot. However, it seems that he is only allowed one pair of shoes on the NHS, and to buy a second pair is almost £500. Wish I could find out more about his rights to have more than one pair of shoes!

Is the price quoted if you bought another pair via the NHS. Could you use google to find a pair cheaper.

duchy · 18 September 2014 at 1:29PM

It very much depends on the disanbility.
For me my son was harder on his clothes as he was clumsy so fell more often. The same clumsiness mean things got broken and needed replacing more often.

Sometimes public transport wasn't viable as he tended to panic in crowds.

Indirectly-I gave up a fulltime well paid job for a part time less paid job as with school meetings, doctor's appointment, physio appoinbtments and the difficulties of finding after school care for a child with higher/different needs working fulltime simply wasn't viable. That cost obviously over the course of his childhood years ran into hundreds of thousands (as I was still working part-time carers allowance etc wasn't payable)

Obviously every case is different but even for a disability that is "hidden" there's a lot of costs both quantifiable and less so eg the divorce rate for families with a disabled child is far higher than the norm-due to the additional stress involved.

Indie_Kid · 18 September 2014 at 1:40PM

duchy wrote: »

It very much depends on the disanbility.
For me my son was harder on his clothes as he was clumsy so fell more often. The same clumsiness mean things got broken and needed replacing more often.

It's the same for me. Also because of how I walk, my shoes wear out much quicker.

forever_skint · 19 September 2014 at 3:01PM

I am a mum to two disabled children one has cerebral palsy, hypermobility and arthritis (child 1). The other has autism (child 2).

Extra cost for child 1

Petrol My child needs driving everywhere. She cannot walk far and cannot access the school bus, therefore has to be driven and picked up from school. Its only 6 miles each way but that's 2,040 miles a year more than other parents have to pay. Not to mention the never ending hospital appointments that are a 100 mile round trip to the nearest specialist hospital, and then of course there is the parking charges as there are never any disabled parking bays free.

Bathing She needs baths to relax her muscles in order to do physiotherapy twice a day this incurs obvious costs.

Heating Her condition means that a cold house means painful joints, so we have to have the heating on most of the time from this time of year.

Clothing She falls a lot putting holes in clothing meaning they need replacing.

Accommodation we have to live in a house large enough to ensure she can use a wheelchair at home.

Work I have had to give up a 30 hours a week contract to care for my two children due to the endless hospital appointments and days where they are unable to attend school.

Child 2

Accommodation

My daughter requires a bedroom to herself as she does not sleep well and needs a specialised sensory room with equipment to help her relax.

Petrol

She is unable to use public transport as it is too stressful and she refuses to walk anywhere.

Clothing

She cannot wear anything with seams or buttons and can only tolerate certain footwear, which is always more expensive.

So for us the cost is quite dramatic, and by the looks of things will only get worse as my children become adults.

Indie_Kid · 19 September 2014 at 3:53PM

I am looking a travel insurance currently. It wil cost me anything up to an extra £300+ per year because I am disabled. Most places won't insure me either.

sheeps68 · 19 September 2014 at 5:55PM

I buy my own portable nebuliser so I can go out as hospital can only provide a large mains machine. Current cost of machine just over £600.
I use more petrol as need to drive to get to places that if I was able bodied I could walk to.
I pay for a cleaner each week to do the tasks I cannot. I actually like cleaning so would not figure in my normal expenses.
I often buy ready prepared vegetables where I would normally buy as they come. I often buy from a supermarket where I would prefer a market but cannot carry it.
I pay for household tasks e.g. decorating that I would like to do myself and then have to move out for a few days as cannot breathe with paint fumes. Another potential expense if that means a hotel.
My medication bill even with a prepayment certificate is increased.
I need to wear medic alert jewellery. £25 minimum a year for membership excluding the jewellery itself.
A taxi on occasions as too tired and unsteady to use the bus.
Travel insurance can be prohibitive of travel.

Do you have extra costs because you or your child is disabled?

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