To think the way I spend my child's DLA is fine and does benefit them?

[Catoninetails]

Bit of background, I'm a single parent with 2 DC, my youngest who is 7 has ASD and ADHD with sensory processing disorder as well. They haven't been able to attend school full time for over 12 months. As a result of this I had to cut my working hours significantly. I get child and working tax credits and partial housing benefit, and I also claim DLA on behalf of my disabled child (low rate mobility and middle rate care, which adds up to £327 a month plus a child tax credit premium for them).

I use this as follows:

-Seam free pure cotton clothing (needed for sensory reasons)
-Music lessons (recommended by occupation therapist for improving coordination and getting both sides of body working together better)
-Saving for an appointment at BIBIC (for assessments and therapy that the NHS can't afford to provide)
-Running a small elderly camper van so we can spend nights at the seaside etc (they cannot cope with sleeping in strange places so this gives familiar surroundings, these nights away are the only holidays we ever get and my child loves them, it's not a luxury motorhome by any means, just a van with beds and a cooker fitted into the back and it's our only vehicle)
-Buying items like a laminator (for making social stories and signs and lists to go around the house), a docking charger for their tablet (to stop the charging port getting fucked AGAIN from being carelessly plugged/unplugged), the sort of things that makes life that bit easier for them and therefore us!
-Magazine subscriptions for them (expensive special interest magazines that they love)

All of this is stuff that I couldn't afford if not for the DLA. And IMO it all benefits my child. But the DLA also goes towards the general running of the house now that my earnings have dropped - bills (higher now we are in the house more rather than being at work/school all day on weekdays), takeaways when we've had an awful day and I can't be arsed to cook, taking my older child for a treat day every couple of months when my younger child is with their dad (older child is classed as a young carer so they need to have that sort of time made for them). The camper van is also used as our daily vehicle for shopping trips etc.

I've seen posts on a DLA for children Facebook group saying that DLA should only be spent on the child it's paid for. Some parents saying they write down every penny of it and how it's spent, or have it paid into a seperate account in their child's name to keep track of it, or take it out weekly and keep it in an envelope and account for how they spend it all. They seem to think it's tantamount to financial abuse and fraud to do what I do 😕 and now I'm worried that I'm not spending it appropriately or keeping records of how it's spent etc.

Everything you are doing is for your son, take no notice of what others say, you are a brilliant mum

Been getting DLA for 12 years for one boy and 11 for the other and never been asked to justify where it goes.

You are spending the money in a very thoughtful and loving manner in my opinion. And yes you should use it to pay bills also, you’re putting a roof over his head and food in his belly I’m guessing you may struggle to do this with being unable to work as much due to caring for him. I would also think spending a little in some time for yourself would be considered more than reasonable given how hard you’re clearly working to juggle all these different things, a nice cinema trip or trip to get nails done etc. Don’t neglect yourself in this x

agree with PP. you are doing bloody well. not many people I know are in a position to spend the money so focussed on the disabled child. Most families struggle financially so much that DLA is just used for the general living costs.

You can spend DLA as you like as long as it benefits the child.

I would also come off the facebook group. obviously, they are spouting a lot of nonesense about. and you got DLA so won't need help in completing the form.

You sound like a lovely mum. Your DCs are lucky to have you.

As long as he honestly needs you around more then cutting back work and spending more time with him and using DLA to pay bills is the number one thing that will improve his life. He needs you and he needs those amenities. The other things you listed sound fine too.

All that expenditure all seems to be related directly to your child’s disability and quality of life imo.

You could argue that the music, camper van and subscriptions are things you'd pay for even if he didn't have a disability, if in other forms but frankly, this is a very small argument compared to how some people do spend their DLA/PIP.

Ill never forget sitting at a table with a group of people in their 60s on a cruise when there was nowhere else to sit and they were having this big discussion about how this might be their last annual cruise all together as PIP was coming in and a few of them would be likely not to be eligible and they wouldn't be able to afford the cruises they'd been doing for the many years since they'd started applying for DLA. They seemed to have no shame about it and we're looking for me for approval. I got up and waited for another table to come free.

You are not wasting the money on luxuries, I really wouldn't worry.

I’m on similar Facebook groups (possibly the same ones) and a lot of the people on there are full of wrong information. I wouldn’t worry too much about what they say!

swingofthings

so are you saying that people/families getting DLA should not afford luxuries in their life's? Do you actually have any idea how hard it is to bring up a child with disabilities or look after a partner who is disabled?

these kind of people need a proper holiday more than most. what a vile post.

swingofthings funnily enough a cruise is one of the things my DD has suggested for a holiday for us. Because she can't get out of bed and has to travel by ambulance it's not really possible to go away so we haven't been away for over 6 years. She wondered if we booked a cruise we could get an ambulance to take her to the port and she could be in bed on board and DH and me could take it in turns to do stuff on board and maybe go ashore. Her suggestion made me cry. She's so thoughtful.

I had to give up work because of Ds and his disabilities. The dla/extra tax credits/carers all goes into the overall “keep a roof over heads and try to save for some nice things” pot.

I think it very much oversimplifies things to think that it would all have to be spent of concrete things to benefit the child because it’s more complex than that. Because we have to transport wheelchairs and the likes I have had to change to a bigger car which costs more to run so the extra costs can come from things as simple as that. I do extra washes most days because he still bed wets so that costs extra but would be seen as from the household fund (electric and shopping) and so on

Oh and his dla etc will be helping to fund a cruise next year. He can’t fly. He loves cruises because they fit for him. Judge away!

so are you saying that people/families getting DLA should not afford luxuries in their life's
Did I say that? Of course not. What they were openly saying was that they were saving the DLA money to pay for a cruise rather 4han spending it on items or services directly relating to their disability. If your question is 'do I think that paying for a luxury holiday is a fair way to spend disability money', then yes, my answer would be that it is not aimed for that mean.

@Sooverthemill, nothing wrong at all with going on a cruise when disabled as it can be an easier way to travel, although not to good if there is potential for urgent medical care, but spending a child DLA to pay for the whole family to go implies that there is other need for that DLA money which doesn't seem right especially for someone with severe disabilities. Let alone taking that trip every year for many years. The context is very different.

The point is Swing you can spend the DLA on whatever you want ,wether ,it's cruises, diamonds or the Gas bill, now I can't afford a cruise and my sons DLA goes towards general household stuff ,but some people might ,as it's non means tested .

Did I say that? Of course not. What they were openly saying was that they were saving the DLA money to pay for a cruise rather 4han spending it on items or services directly relating to their disability.

ok, DD has severe learning difficulties caused by a genetic condition. without saving part of her DLA, we would never be able to go on holiday. so we save it.

There is no treatment and cure for DD.

what item or service directly relating to DD's disability would you approve to spend DLA on? And why saving it for s holiday of it does us a world of good?

And why not saving it for a holiday if it does us a world of good?

you sound like a lovely mum who is doing the absolute best with the dla for your children.

You sound like a wonderful mum and like you are doing your best. Your best reads as incredible to me. I wouldn’t give their comments another thought

DLA or PIP is not based on income or expenditure, it's not even based on diagnosis, it's based on need. As a parent it's not even your money, you act as an appointee for the child. If the child needs extra travel costs, personal care, or if their extended care means extra food or energy costs, that's what it's there for. If it's saving for a more suitable holiday, that's what it's there for. My DD is autistic, not in FT education, her social group through a charity once a week is nearly £30, no discount for a FT single carer.

Revisiting this thread as I was starting to feel guilty over our daughter's dla/pip. When she got dla it went into the household pot to benefit the whole family.
Once she reached 16 and had to claim pip it was paid into her own bank and she pays us a percentage towards the household bills in the same way her older working siblings do. She spends the rest on things herself - clothes, games etc. I was feeling guilty for taking money off her while I was still getting child benefit and tax credits for her as it felt really greedy in hindsight.
I also feel guilty sometimes that she gets a whole heap more money than her siblings did at that age but my husband says it's different for her because they could have found a part time job while they were in college which she is unable to do because of the problems she has.
Reading this thread makes me feel a little less guilty.
What do other families do when their disabled child reaches 16 and can be in charge of their own money?

My oldest DS has the lowest amount of PIP possible (his award was cut but that is another story). It goes into our budget like he would pay board if he was working and in exchange DS gets his room plus everything he needs sorted. Washing, meals, transport to his voluntary work and appointments plus advocacy at these, help with financial things etc. We pay for some sessions with a PA to take some of the stress off me, the rest I do. I work part time round the needs of two autistic DC and being able to do so is important to me and them, they wouldn't cope with more carers and too much time away from home. I've had people suggest that I should only be spending the money on items or services that are accountable. If I wrote an invoice at the going rate for services rendered plus loss of earnings I bet it would dwarf the PIP.

It’s fine, you’re doing just fine. Ignore them.

@Catoninetails Hey girl! you sound like a bloody brilliant parent! You spend it how you see fit, no-one can tell you how to spend it, you're doing fab!

What you're spending the money on is absolutely fine, I've been claiming DLA and now PIP for D's for more than 10years and nobody has asked for proof of how its spent, as long as it directly or indirectly benefits your child then you are spending it correctly.
There is a place near us that helps people fill out benefit forms etc for people with disabilities and I popped in there one day to ask them whether it was OK to spend some of the DLA on financing a new car and they asked why I needed one, I said that my old jalopy had seen better days and I was becoming increasingly worried that it wouldn't make the 80 mile round trip if I needed to get to my Son's school in a hurry I also said that without the car I couldn't get him to the place where he goes for his hobby, or to get to swimming lessons and gala's, they said that it really was fine and they also said that I didn't have to explain what I spent the money on to anyone.

I never told anyone else how much DLA I received or how I spent it because quite honestly it is nobody else's business and the same goes for PIP now.