Feel guilty about spending DLA

[DLAGuilt]

I've name changed for this. My child has been awarded middle rate DLA which I'm very grateful for. So far I have received a lump sum payment and a letter telling me I'm the trusted representative to look after this money. My plan is to spend some of it on additional lessons for my child to assist with their learning. I'll still have some left over each week. But I feel guilty for using it towards things I have already been doing. I'm not particularly well off but I'm managing ok at the moment. My child has a savings account and so far I've stuck all payments in there incl CB when I haven't needed it for my child's clothes etc.

For every family, some costs will be higher than they otherwise would be because of specific needs of the individuals. That might mean only being able to tolerate specific fabrics, or needing to heat the house warmer or do extra laundry or additional travel costs to appointments. For most people, these costs are small or occasional. Payment of DLA is an acknowledgement that for your family, those costs are too high to be reasonably met from within your normal budget. The point of the payment is to try to level the playing field and make life for families dealing with disabilities a little less hard. To me, that means chuck it in the family pot. Please don’t feel guilty about spending it.

Let nursery know too, they can apply for Disability Access Funding for 3 and 4 year olds in receipt of DLA.

I'd put half of it in the family pot to use against general living costs (which will be naturally that bit higher), and the other half save for things that are ad hoc specific expenses for him - eg respite services, additional supports etc.

@JustKeepBuilding thank you I didn't know this. I will discuss when I go and pick up later.

I'm a foster carer and look after a child with complex learning disabilities. He was on top rate DLA and lower rate mobility. I kept this money in separate account for him. I found it hard to spend all of it every week and asked his SW if I could save some for him. She said no ot is a living allowance so must be spent on him every week. It is a lot to spend on one child every week. I spent it on 3 hours tuition. 1 hour each for Maths, English and Science because he loves learning. Swimming 3 times a week. 1-1 cricket coaching and all cricket equipment. Karate lessons and belts. In holidays extra 1-1 cricket coaching, short tennis and holiday play schemes. I still had some left over. Got him a laptop. Now he gets PIP highest level and high level mobility too. I am his appointee. I use as much as I can for him every week on things he needs then put some back for him to spend on his holidays. Some goes in his savings but this must be kept under £5k I have been told be SW. I keep some in a separate account in my name but it is his and if he ever needs it it will be available for him. The likelihood is he will remain with us until he is into his 30's whilst learning independent life skills. Because I am a foster carer I have a spreadsheet documenting how every penny is spent. I only do that to cover myself from allegations. If he was my own child I would not do spreadsheet.

Ours just goes in the family pot and is spent on normal life stuff like food and clothing and heating.
Without it we would be relying on one wage which isn't enough but is just over the amount to get any other benefits 😕
(I do also get Carers Allowance but Carers isn't a massive amount)
It's there to be spent. That's what it's for.

How did the DLA find out they don't do checks?

No reason to feel guilty.

i just use the money for day to day living expenses as, because of the children’s disabilities, I’m no longer to able to work full time (neither child can cope with before/after school club and I’m often phoned during the day to collect one of them).

I did originally feel guilty until I realised how much more we spend compared to others because of their difficulties - nappies, special clothing, restricted diet meaning one will only eat specific brand products, greater use of water for baths, sensory toys etc.

*I

My daughter has had DLA (and now PIP) her whole life at higher rate.

It goes into our family pot. I’m a single parent and haven’t been able to work full time due to her needs so it supplements my income and goes towards rent and bills. She’s needed her own room so my rent is higher as I need more bedrooms. My bills are higher as I can’t let the house get cold, she needs clean clothes every day so the washing machine is always on. I spend a lot on fuel as we live fairly rurally and have to attend appointments miles away. I’m driving approximately 250 miles extra this week for hospital appointments.

She attends a special needs club once a month which I pay towards (it’s subsidised but still costs me). She couldn’t be left alone when younger so I needed childcare for longer. She needed a special car seat for longer than another child would.

All these things add up!

No they didn’t. They never check how you’re spending it unless investigating misuse through fraud, such as a family member appropriating it for their own use, or committing financial abuse.

You can spend DLA and PIP however you like, however UC and some other benefits can be reduced if you have savings over a certain threshold.

My SW was adamant I spend the money because she said she knew of a child that had his money reduced as it was never spent on him. No idea how DWP would know this though. I have never had any checks on me and I have told SW spreadsheet is there if ever you want to look at it but she never has.

I suspect your SW made that up to encourage you to use the money tbh. The DWP award according to need, not how it's spent.

DDs just goes into the family pot.

How can they take it away based on how much of it you're spending without any warning that they can do this in the paperwork or the law?

Why doesn't the claim form ask how much money it costs you to support each element of the award, if this is how it actually works?

Are you sure your acquaintance didn't get a reduced award because the child needed less support in one or two areas as they developed over time?

"DO NOT save it. I know someone (yes personally) who had a chunk removed because they said if you aren't spending it l, then you don't need it."

That didn’t happen. DLA is given based on disability/medical need only. David Cameron wouldn't have needed the money for his son but still got it.

Agreed. A lot of parents with disabled children can’t work at all/ reduced hours due to the number of appointments/ interventions/ episodes where the children have to come home from school early etc - no employer tolerates all of that. The hit to the family income is huge but also lifelong, in terms of pension contributions etc not made. Don’t feel guilty - the payments aren’t lavish.

They can't and they don't do checks ,my son is 12 a c has been getting DLA since was three ,we have ever once been questioned how we spend his DLA
and neither has anyone I know through my child I know a lot of people with disabled children.

I wonder if this poster is mixing up Direct Payments (to be used for assessed care needs only and accounts submitted) and DLA?
I've never heard of anyone being checked up on to see how DOA is being used

It goes in the family pot here too. It means that I can continue to work part time around school hours as he isn't able to be left unsupervised. I save a fixed percentage of the payment but in an ISA rather than an account in his name so that it won't affect any future benefit entitlement.

Ours just goes in to the bank and is used like the rest of our income. Essentially it helps with the fact that I can only work within school hours, because childcare for a 13 year old with additional needs just doesn't exist here.

You sound lovely @DLAGuilt and I’m so pleased you have had lots of good advice telling you not to feel guilty. Put the money in the family pot, you’re a family aren’t you? And don’t give it another thought.

@Twiglets1 thank you. We are a single parent family. I try and do my best for DC. It is incredibly difficult at times and I do worry about money a lot. So this has really helped me. I want to give my DC the best possible life I can.

Anything that benefits the child, having to work fewer hours to be flexible for appointments, extra heating, replacing broken items, sensory equipment, different food. Food is a big one here as I have to make several different meals and all adds up. Transport, mine can’t cope with public transport so extra fuel and wear and tear on the car whereas they’d have free bus transport otherwise. Clothing which can be more expensive to make sure it meets sensory needs. It doesn’t have to be the obvious disability related things.

Of course you do and now things will be a little bit easier financially which is brilliant

If you get UC make sure you have told them too as you will get a disabled child element and carer element, and they can be backdated.