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

kingfisherblue

My son is 16 and has Down's Syndrome, along with several other medical conditions.


Petrol - my son cannot easily access public transport and needs driving to most places. A wheelchair in the boot adds weight to the car, increasing petrol usage. We also have several hospital appointments and various clinics, not always in our town.


Heating - needs to be on both day and night for a large proportion of the year, due to breathing difficulties. Even through the warm summer months, I have had to put the heating on sometimes.


Tumble dryer - I love the dry weather as I can hang washing outside. The rest of the time, the tumble dryer is used as damp air affects my son's breathing.


Clothing and bedding - hopefully the cost of replacing these will reduce now, as my son is finally continent! He still vomits, but not as frequently. In addition to replacing clothing and bedding, the washer is also on more often than average households.


Social life - activities are few and far between, and don't tend to be local. It takes time and money to drive my son to the only youth club for deaf teenagers, rather than him accessing a 'normal' youth club. Having said that, he does attend a regular youth club as well, but I have to stay in the building. I am also involved in a local parent-led group that provides social activities for families with disabled children. Although this does give him a social life, and some activities are free, other activities do cost. I don't class this as extra though, as I would be paying for him to have a social life anyway. If he wants to paly with a friend, I have to drive him there. He doesn't have anyone near to us that he can play with. His school takes children from all over our town.


Toys, books, games - my son needs these items appropriate to his ability, but also appropriate for his age where possible. It can be difficult finding the right balance, and I have made some expensive mistakes.


Glasses - my son wears glasses all of the time. As he can be clumsy, we need a spare pair. Children's glasses are too small, so we have to pay for an adult pair. When he needs new glasses, it takes a full week for the lenses to be ordered, delivered, thinned, and fitted. So having just one pair isn't an option, as he would be without his glasses for too long if he breaks or loses them.


Shoes - my son wears special insoles. We are allowed one pair on the NHS, but additional pairs cost £71. I have to buy shoes that fit certain criteria regarding support, the 'tilt' of the sole, and fastening. Usually I pay over £50 for the shoes, as I cannot fulfil the criteria for a lower price.


Wipes - until my son was toilet trained earlier this year, I spent a fortune on wipes. Huggies tend to be the best for cleaning him, as they are thicker than most. However, I still had to use three or four wipes at a time, as using only one or two wipes caused leakage through to my fingers (not nice!). This is 3-4 pieces per wipe of his bottom, so a nappy change could take 20+ wipes each time. Even now that he is toilet trained, I still need to use wipes on my son at times, but less often as we have a toilet that cleans him.


Toilet - not a cost to me, but to the council. My son has a Closomat toilet, which cleans and dries him after use. It cost £2500 (no VAT) about eleven years ago, and has been replaced once since then. It should be serviced annually.


In addition, I gave up work to be my son's carer. It wasn't a highly paid job, but it was better paid than Carer's Allowance and Income Support. At the time I gave up work, I was married so didn't qualify for IS. I am now divorced, so claim IS.

kingfisherblue

Another cost is for holiday schemes - vital for children with disabilities to have a chance to be with friends, and for working parents. Our council scheme offers a limited number of hours (35 hours a year) @ £3.50 per hour. Any additional hours are charged at £12 per hour. Few teenagers need a playscheme. I know that some parents choose to pay for sports schemes through the holidays, but these are a choice, whereas for many parents of disabled children, playschemes are a necessity.

Indie_Kid

My other costs include:
Taxis - I don't drive and not everywhere is accessible by bus. Walking isn't always an option
A group I attend - because I struggled at the local one and it's the only way I can solicialise comfortably
Clothing - can only wear certain clothes, which generally don't last long
Ear plugs
Wet wipes
Glasses - NHS don't pay for tints because they're seen as a luxury and they don't pay for prisms either
Food - can't eat most foods due to sensory and other dietary issues

And then there's the one off costs, such as electronic hand held magnifiers and a laptop with a large screen

My special interests can get rather expensive too.

kingfisherblue

Indie Kid, the NHS pay for my tints.

Indie_Kid

kingfisherblue wrote: »

Indie Kid, the NHS pay for my tints.

Interesting. I did ask about this (as there's a medical need) and was told no.

KxMx

I get Prisms paid for, are you on a qualifying benefit to get full help with health costs or have an HC2/3 under the Low Income Scheme?

I get ESA (IR) now and before had an HC3 and got prisms paid for both times.

Indie_Kid

KxMx wrote: »

I get Prisms paid for, are you on a qualifying benefit to get full help with health costs or have an HC2/3 under the Low Income Scheme?

I get ESA (IR) now and before had an HC3 and got prisms paid for both times.

I am on ESA (IR) but only get one of the cheaper vouchers. Even with the free glasses, it's still some £50 for the lenses. (more if I remember to ask for them to be thinned down)

Replacement of aplliances and aplliances that I can use unaided is another one. I couldn't use the last coffee maker unaided (I could never remember what to do) and managed to melt the microwave door, because I couldn't see the decimal point...:o

Years ago, mobile phones was another one. It was rather difficult trying to get hold of one with either Talks or one that I could see properly. If I was able to get hold of one that I could use, they tended to be more expensive. Don't get this so much now, thankfully.

KxMx

I have ESA (IR) and on band A for voucher so the cheapest, but still get prisms paid for on top, because it is a medical need. As far I am aware this is universal for the NHS and doesn't vary from area to area.

Sounds like your optician doesn't know the rules.

kingfisherblue

Indie_Kid wrote: »

Interesting. I did ask about this (as there's a medical need) and was told no.

That's odd, I posted at about 7.30 this morning, but my post has disappeared (along with my energy after a day out with the Rainbows and Brownies!).

I posted that I am on income related benefits (income support) and that I didn't know if that is why I get my tint supplied by the NHS. It is the darkest tint that I can have whilst still being able to legally drive at night, and it is supplied because my eyes are extremely sensitive to light, causing a problem with my vision as well as pain.

My optician is SpecSavers.

Hope this helps x

GlasweJen

Woah Indie Kid back up a minute, why are you paying for prisms?

Fresnel (sticky on) prisms should be prescribed and given out by a trained optometrist or a binocular vision clinic at a hospital/teaching university. If you get a prism incorporated into your glasses there is a supplement for this on the yellow voucher so if you get free glasses you ought to get free prisms. It's £12.20 per lens here in Scotland so £24.40 here and my old work used to swallow the rest of the cost to thin the lens for high prisms.