What do you do with the DLA money? Special fund for the future?

[CristinaTheAstonishing]

Less than a month ago I finally re-applied for DS's DLA. We'd let it lapse for a couple of years or more because the forms are just so depressing to fill in. He's 7.5, deaf and wears a cochlear implant. Finally I did the forms online and today we got the letter through. They've put him at middle rate for personal care and lowest rate for the other component. Totals £60 a week which is fantastic news (in as much as having a disabled child can have a positive side).

As this is much more than we used to get before (I think it was just £16 a week) I feel we ought to do something with the money. What have others done? Premium Bonds? That's about as risky and adventurous as I've been so far financially. I don't think ISAs would be for me or other such investments. Something simple, even if it doesn't bring interest, just to know it's aside for him.

Sorry for the long post.

We've put part of dd's into a savings account. I thought I would pay it back to her as an allowance when she's around the age they normally get a Saturday job. Might get some Premium bonds though too.

I so wish we could afford to put it all aside for the future.

ISAs are simple - just like setting up a bank account and putting money in there each month.

tbh I just spend ours. I see it as a means of 'buying' me more time with dd(would certainly have to work more without it). It allows us to do stuff with her and pay for whatever groups /support/ toys/equipment benefit her.

I think putting some aside is a grand idea - I have huge admiration for those more organised than me who can manage this

We are in the same situation ejb. The money means I can be at home for ds. Hopefully i'll be working in a couple of years but we'll have to see how things go.

yep im the same as you ejb it means we can get ds what ever he needs/wants and i can be at home to look after him with out it i would have to work

We're not financially n a position to do anything with it other than live! It part pays for therapies/diet/equipment/nappies - all the additional costs of ds1's condition.

we put our kids DLA money into premium bonds, it is so hard to plan for the future, to be honest i can't see any of our three being able to live independantly.

Be careful then OJ- as adults are only allowed a certain amount of savings, really I'd take some advice if you end up with a bit of a nest egg- we need to get our wills rewritten or the money will end up going to SS (the place I want ds1 to go is something like 2 grand a week so years of savings would be gone within weeks).

we use ours for days out where the kids want to go, for entertaining and treating them, not in a position to put away for the future, i hope we will be able to one day.

same reply as dustystar

Same as Fio here!

Thanks so much for all the replies. We weren't expecting to get so much, part of the reason we hadn't reapplied till recently was that we didn't think it was worth the heartache of listing all the things DS couldn't do.

I'll look into ISAs and other secure savings forms and perhaps start taking him again to musicals and ballets (money had been too tight for this recently). Thanks for the reminder that he deserves a treat - and that was something we used to love doing together (esp. as Saddlers Wells and Peacock Theatre had v good terms for disabled person & companion, hopefully they haven't changed them).

here in Aus - no DLA equivalent BUt i do get a carer's payment - dh earns to much to get an allowance SO we use that money to pay off our car - had to get a new one not long after we arrived in Aus as well as pay for dd1's swimming lessons and kindy fees.

Then when we finish paying off the car - go towards private health insurance for when we no longer have access to govt therapy. As well as swimming fees and anything else dd1 is involved in at the time.

ours works out to be about 90 dollars a fortnight so that is tied to the australian equivalent of the child benefit as well - so that money also goes towards the car etc as I said in the previous post.

sorry not much sleep last night.

Hi Eidsvold - DS's current DLA is now big enough to pay off our monthly mortgage (ours is v low) but I thought we'd do something else with the money instead or it will just get spent either on things we didn't need or things we'd have had to budget for anyway. Now, if I could put the child benefit into the same pot too... He could spend it on a gap year. DH thinks it's naff for me to even consider going with DS on a gap year around the world I already freak out at the thought he might be stranded somewhere with no access to batteries for his cochlear implant, or that his CI falls into the river and he's left totally deaf etc.

We spend J's as and when it's needed. I look at it a security for when we need to pay for something that will benefit him, so that I don't have to stop and think whether or not we can afford it. Bearing in mind that he has no real school friends, it helps if I can pay for social opportunities outside of school, eg swimming, karate, horse riding etc that he wouldn't otherwise have.

I also think of it as a family benefit - whatever we spend it on to ease the way as a family is a valid use. I have ME and tire very easily - I don't get DLA myself but I do get IB - and I have no qualms about using J's money to justify taxis for myself if it enables me to be well enough to meet his needs elsewhere. Anything that can free up my time and energy so that I can spend it on J is OK by me. Oh, and it will be going towards driving lessons soon so that I can transport J to the school we're moving him to in September.

I share Gess concern re wills and inheritance. I went to a MENCAP seminar and it really made me think - I am ashamed to say I haven't actually sorted the provision yet!

DLA tends to get used to improve our family life. Both my children (1 NT & 1 ASD) have "extra" activities such as horseriding, swimming etc. It also helps with holidays, finding the right holiday doesn't come easy or cheap.

DLA also helps making replacing the many breakages a little easier.

I'm saving up my DLA right now for one of those induction hobs that (apparently) will not burn skin if touched! Also used it to improve the security in the garden and put rubber flooring down in bathroom!

I know my grandmother (who needed nursing care) was allowed 20 thousand before she started to have to contribute to her care (so she never had more than 20 grand). I don't know whether the limits are the same for disabled adults being cared for but I guess so . What I would hate is for us to die, the house to be split 3 ways because (well we might be OK at the moment giiven our debts) if ds1 ended up with more than the threshold then it will end up being spent within weeks on his care. There are special trusts that the money can go into - and then I guess ds2 and ds3 could administer and use to buy him extras for his room (or take him on holiday if they/their partners are brave/tolerant enough).

same as ejb and others. Ours means that we can afford to fence in the garden, replace the poo-ed on carpets, mobility aids and appropriate toys, have a break in a cottage since camping is currently impossible etc.....unless anyone knows of any campsites with fenced in pitches?

Hi

My answer to the quwestion asked is the same as ejb and many others...without it i simply could not afford not to work. That leads me to another reason for my post CristinaTheAstonishing do you work or if you do do you earn less than about £80 i think it is....if so you qualify for Carers Allowance which will give you another £46 or so a week!

I keep a separate bank account for DLA, Carer's Allowance and Child Benefit. I use it to pay for holiday schemes, my memberships to some charities etc and I've also used it to pay for DD's school fees one term. My two have some premium bonds bought by Granny so, if they win, it goes into the same account. I think using it to take your DS to some shows/treats is a great idea, as is trying to put some of it away if you can but, as others have said, be careful on that one! I took DD (NT) to the Peacock Theatre last Saturday to see The Secret Garden - it was fantastic, better than the Snowman. So I strongly recommend it if he'd like it.

Hi Julie - I work 10 hours a week and earn more than £80 a week (gross & net). I'm going on maternity leave from October, which I think will be unpaid (as I end my current contract end of September - great timing, eh) so maybe later on, towards next year I might qualify for extra. Although I'd love to get a full-time job again and I'm doing all sorts of courses to try and improve my prospects.

Davros - I haven't checked the schedule at the Peacock in a while now as money had been quite tight. Is The Secret Garden spoken? Dominic isn't yet at the stage where he can understand speech w/o lipreading even through the implant. I mean he can understand most (70% let's say) of what we say but I think he'd struggle with unfamiliar voices. We'll stick to musicals and ballets for a while as they are more visual. I checked out a few at Wimbledon theatre but they are so expensive and only give £3 off for disabled person & companion.

Joggeroo - we are off camping for a weekend with DS's Woodcraft Folk group. DS will be the one with mum & little sister in tow, but I can't bear the thought of him sleeping in a tent and not hearing any noises at night when he takes off his hearing aid and cochlear implant.

Gess - thanks re upper limit of potential savings. I think it will take us a while to reach anything significant. I guess I'm just excited now as we hadn't expected this money and think it's a huge amount. It probably isn't, though. Luckily, DS no longer needs private speech therapy, the money would be eaten up in no time at all.

If we get it, it'll go towards physical activities for DD1 - swimming lessons, for example - and any tutoring she might need once she starts school.

Good luck with your application, Expat. What is your DD1's condition? DS was awarded middle rate for personal care because he needs help with basic functions (of which I believe hearing must qualify) several times a day throughout the day. The lowest rate for mobility because he needs help when he goes on unfamiliar routes. Or some such awkward wording.