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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

93% of families with a disabled child have some form of financial difficulty

30 replies

yurt1 · 06/12/2007 14:46

report here

PMSL at carer's allowance meeting the costs.

I've seen similar reports to these and often the biggest problem is ropey childcare making work so difficult.

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Original poster

yurt1 · 06/12/2007 14:47

let me try again

here

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Blu · 06/12/2007 15:19

There are so many ways in which having a disabled child will put financial pressure on a family, in ways whch are not allowed for. As far as I can see the other 7% must be naturally extremely wealthy, or something.

needmorecoffee · 06/12/2007 18:57

my DH had to give up work tyo help care for dd. But even in work he didn't earn enough to cover the extra heating (she's quadrplegic so needs to be warm), the extra washing (she drools on everything) or any SN equipment the tight fisted batrads wont buy. Had to buy her a tumbleform chair. £275!!! Need to buy her a new harness for her wheelchair. £150. wheelchair services wont pay for it cos they say the one she has is supportive enough. Bloody isn't.
Then add in endless bus fares, taxi fares (no wheelchair bus evenings or weekends to the hospital) etc etc

sigh

jenk1 · 06/12/2007 20:16

yes but you cant get carers allowance if you work, i mean whats that all about?

even if you work you still care for your child in the morning,teatime,evening and for a lot of disabled children who are awake during the night and what about weekends?

its scandalous it really is.

there needs to be a complete overhaul of the way that the government helps out families with disabled children.

Original poster

yurt1 · 06/12/2007 20:31

exactly jenk. I don't get CA now because in October I started a (funded - luckily) PhD. I still care for my son for exactly the same number of hours per week as I did before I started the PhD.
Bollocks isn't it?

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Original poster

yurt1 · 06/12/2007 20:32

including being up at sodding 3am with a hyper 8 year old.

I more than earn 40 odd quid a week (especially considering the place I have my eyes on for when he is 18 cost 300 quid a day!)

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Davros · 06/12/2007 20:42

Quite agree Jenk. A very good friend of mine has just won a Tribunal to keep her DS at the school he currently attends - HOORAY! Except, it has cost her nearly £30,000, none of which she gets back inspite of winning. She and her family are on their knees financially, to get £30,000 you must have to earn around £45,000!!! She and her husband both work like dogs. They are delighted but it stinks.

Original poster

yurt1 · 06/12/2007 20:46

Had two friends who went to tribunal this year for ABA. Because they had to 'prove it worked' they had to spend much the same Davros. The price of a year's (plus) program plus assessments plus all the lawyers fees. Both won.

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Blu · 06/12/2007 23:28

Grrrr.

I am thinking, too, of the many mothers I know of who have been left because the fathers of disabled children simply couldn't handle it...an indirect cause of yet more poverty and stress fro famliies with disabled children.

Original poster

yurt1 · 06/12/2007 23:29

oh yes that's a common one!

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Blu · 06/12/2007 23:44

And days off work.
Every time we take DS to his consultant, we meet the same families who have disabled children with complex procedures etc - and so many parents are not allowed paid time off for children's medical appointments, or assessments etc. When DS was in hospital there were families there with children in for regular stays and very few of them were allowed any flexibility to attend. Just unpaid leave - or have to leave job because they wouldn't allow any more unpaid leave.

Skipsmum · 07/12/2007 10:36

Cost of christmas bike for DS1 - £60.
Cost of christmas bike for DS2 -£320.
People wonder what we spend the DLA on.

saggarmakersbottomknocker · 07/12/2007 10:55

Days off for appointments, poor school attendance and child-care issues were why I stopped working.

I'm lolol too at the though that Carer's covers costs. And actually one of the things that winds me up about Carer's is that they only allow you to earn so much rather than allowing you to work a certain number of hours.....so I can 15 hours at a crappy job paying min wage but can't do 10 hours in a nicer, more stimulating job that pays £10 an hour. I'd have more disposable income, be able to care for my child for longer hours and have a bit of job satisfaction.

Original poster

yurt1 · 07/12/2007 11:08

yes that always struck me as crap as well saggar. They will however allow you to average it over a month (worth knowing). At one stage I could work for 2.5 hours a night for 50 quid. They allowed me to do 2 nights one week, one night the next week - so the average for the month was less than the allowed limit - even though 2 weeks a month I was going over. They said that was fine.

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TotalChaos · 07/12/2007 12:10

Or ropey schoolcare - it seems to be a not unusual scenario on here that m/s schools can't cope, so parents are called in to take the child out/children are only allowed in for a few hours a day etc. How on earth can anyone manage a job with that.

Original poster

yurt1 · 07/12/2007 12:19

and even if the extra support is provided in school and they do cope- there's then no extra support of after school clubs and so no access to non school hours work.

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mymatemax · 07/12/2007 18:31

I worked p/time after ds1 was born & I was the main wage earner, after ds2 was born to get the flexibility all the extra time off etc I had to change jobs & reduce hours about 12K per year worse off on salary alone.
DH has stopped shift work another 5K gone. Every time ds2 has an appt its unpaid leave.

All the extra washing, nightly bed & clothes change, hi bedroom walls are repainted every few months, carpet cleaning.
Extra childcare costs, we use a childminder & have to keep her on a retainer,etc etc.

I certainly don't spend DLA on getting my nails done! If only.

ShinyHappyStarOfBethlehem · 07/12/2007 18:49

"Steve Broach, the EDCM campaign's manager, said: "It is scandalous that families with disabled children are forced to choose between going into debt or going without."

So true. We don't have loans or credits cards but we are crippled by our small catalogue debts and our overdraft. And don't know how to get out of it. It's a no win situation. And we rarely order luxuries from the catalgues.. they are for larger items that sometimes need replacing.

Sometimes I feel we should be better off than we are (indeed we would if it were not for the overdraft) but it is virtually impossible to get out of the trap. I spend a lot of money we can't afford on swimming club fees for the older two but I would not/can not compromise on this. The swimming has kept DS1 (who has CF) as healthy as he is, without a doubt. And more shamefully, DH and I have a gym membership which was recommended to us by a counsellor to help reduce stress and get DH an exerise programme he can do to help with his medical condition. He is so much better for going that I can't regret joining even those fees are really beyond us and I am often ashamed to admit that we belong to a gym because I know people would think that people in our situation shouldn't do.

If it were not for DS2 I would have gone out to work full time, long ago. But I can't go at all.. part time is not financially viable and full time would leave DH with too much to cope with as he is disabled himself and unable to work.

This is not how life was supposed to be! This was SO not my "grand plan". When I get my degree however, (another 3 years min) am hoping circs. at home will have improved enough for me to earn a decent wage and support us all. Hope I'm not in cloud cuckoo land.. I refuse to consider that I might be.

That report is really sad.

ShinyHappyStarOfBethlehem · 07/12/2007 18:50

Getting nails done.. LOL.. chance would be a fine thing wouldn't it? I don't have any anyway due to stress!

needmorecoffee · 07/12/2007 19:49

we just got awarded 400 quid from a CP charity to buy switches and switch operated software for dd.
I'm amazed a switch isn't supplied by the NHS. When a child can't use hands, switches are their only way to access the world but you gotta pay.
Gawd knows what we'll do when she needs a communication aid. Those things are £7000 for just a simple one. Our area doesn't supply them thus denying children a voice. DD, cos of her complex issues will need one that is £21,000. Way more than we get to live on.
But apparently DLA covers the 'extra' needs......

Original poster

yurt1 · 07/12/2007 21:48

I agree a switch shoud be made availbale via the NHS.

I'd love Ds1 to have a boardmaker pad. It could be used for teaching and communication. It's £499 - we have no chance of affording that.

I may apply to a charity I;m actually 99%certain it would be something that was very useful to him. Usdually I don't apply for funds (never have before) as I'm not entirely sure he;ll use it/benefit.

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FioFio · 10/12/2007 10:08

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FioFio · 10/12/2007 10:08

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onlyjoking9329 · 10/12/2007 10:15

well despite having three kids with autism and a poorly DH so thats all four of them on DLA top rate, i can't claim carers allowance cos i am on incapacity.
DH gets carers thou.

Original poster

yurt1 · 10/12/2007 10:19

yes that's the hugest problem with childcare- finding people who can cope (and an environment that is safe)......

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