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.

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What can I spend my DLA on?
It can be spent on a range of activities and equipment to meet the child's additional needs. It can be spent on additional foster household expenses such as laundry and heating costs. It can be spent on replacing clothing, shoes, glasses etc if excessive wear and tear/destructive behaviour is indicated.

I lifted that from Citizens advice. Of course you can spend it on bills.

@Ricco12

You know carers allowance is £69.70 a week?

Carers allowance is about £68/week it's a pittance ,the DLA doesn't say what ,it's for because they can't stipulate how you use it to benefit your child,for some children it benefits them have it a parent always on hand ,for others clubs etc.

@Ricco12 the Carers Allowance I get just about covers the many taxis we take everywhere. Carers Allowance definitely isn't the equivalent of having a job.
We don't get any Universal Credit. My husband earns just over the threshold.

@DLAGuilt I don’t qualify for carers allowance as I earn over the threshold but I do qualify for the carers element of UC. Definitely worth checking with them.

Also with regards to Ricco12 I tend to find my child’s life is enriched by having a roof over their head and food in the cupboards 😂. Funnily enough some of us are single parents, with other kids, with a SN kid with significant needs and a low enough income that mean that DLA/PIP is necessary to assist with those day to day costs as well as classes etc.

Technically, it is also walking distance,

@PollyEsther The statutory walking distance is irrelevant when looking at the SEN/disability criteria. Being in catchment and then moving out doesn’t matter either.

@Ricco12 Because we all know the measly £69.70 that is carer’s allowance makes up for the reduction/loss of earnings. Not working/working less is for the disabled child’s benefit and to meet their needs. It is an extra cost of their disability.

DLA award letters do not state it cannot be used for household bills and I’m sure meeting the increase in household bills due to their disability does enrich their life. It is certainly in their best interests and parents must act in their child’s best interest when managing their DLA.

We get DLA and carers.

At first I felt overwhelmed by the money but now it's just normal. I think before you have a disabled child you don't realise the costs and I don't just mean financial I also mean physical and mental.

Ours goes into the family pot to cover the expenses that come with having a child with severe and complex lifelong disabilities. Off the top of my head some expenses are...

Main one is the fact I cannot work due to being a full time carer

Extra gas to heat hot water as my child can't take showers only baths.

Extra electric to charge various medical devices.

Private therapy

Extra pull-ups as the hospital seems to think 5 is enough 🙄.

Diesel to regular hospital appointments and meetings. Food while in hospital.

Massive food bill due to restrictions on food.

Also I use it to mitigate the effects of our disabled DC on the rest of the family eg when dc is in respite we will take our other children out for the day etc so they get a break and a more normal life too. Gym membership for me as quite frankly it's essential for my mental and physical health.

Ok I didn't realise this.

I assumed it was for the child only not the household.

Obviously they wouldn't actually know what you spent it on anyway I guess.

Thanks

DLA just goes into the family pot here. By the time we've paid for very high energy costs due to ventilator etc, food for special diet in with the usual groceries, extra incontinence products, specialist clothing, etc there's nothing left to put in savings, which I've been advised against anyway.

Household bills that are higher than normal because of the child’s disability are for the child. If the child wasn’t disabled the household bills wouldn’t be raised because of their disability. For example, if DS’s weren’t disabled I would be using far less heating than we are at the moment. The extra heating costs are for DS’s, not me/DH.

No they aren’t. Savings are relevant for lots of social care provision where there is a financial assessment and also to means tested benefits such as UC.

Please explain how they make a difference to someone living in a care home, funded by Social Services?

Say DD was living in a care home, funded by SS - she gets DLA care and mobility at the high rate, and ESA income support group, plus disability premium. I’d be surprised if many parents, except the wealthy could save more than £23,250 from the DLA. So, assuming savings were below £23,250, SS would pay the care home fees. LAs can’t take the DLA mobility to pay towards her care. She only gets DLA care for the days, she spends in our care, mainly at the family home. If she had savings over £6,000, she wouldn’t get ESA; but she could spend the money on what she wants, until it ran out, then she could claim ESA again or probably UC. Once the savings ran out, the LA would take all the ESA or UC to pay for her care, except the £25.65 PEA a a week.

It doesn’t matter what benefits DD would be entitled to, all she could keep, living in residential care, would be DLA mobility and £25.65 PEA a week.

I’d be surprised if many parents, except the wealthy could save more than £23,250 from the DLA.

You have answered your own question here, proving savings aren’t “an irrelevance”. You would be surprised how much some parents build up in savings by saving their child’s DLA. After all £23,500 isn’t even 4 years worth of HRC/HRM. I have met many a parent, not all wealthy, some barely managing, surprised their DC is subject to financial assessment because they have saved the DLA.

Besides, my post wasn’t just about those in a care home.

You can’t have more than £6k without losing ESA (on a sliding scale). I tried to save up for some car costs for ds1 and ended up with him losing some ESA (luckily only for about a month and only just above the £6k so the reduction was minimal - but I had to go on a spending spree for him).

It's jolly expensive adapting life for a disabled child. The payment is to even things up for that child.

Hidden expenses often like a seamless duvet, black put curtains, sensory aids, foods, parking, needing to run a car because public transport isn't easy or accessible for you, extra heating, specialist bath products. Therapeutic activities. All these little things add up.

Besides, my post wasn’t just about those in a care home.

OP said in a post, that her DC may never achieve independence - that is why I posted about care homes.

Besides, my post wasn’t just about those in a care home.

OP said in a post, that her DC may never achieve independence - that is why I posted about care homes.

She did, but “may not achieve independence” doesn’t necessarily equate to a care home. Even if that is the ultimate aim it doesn’t mean the child will move to a care home dot on their 16th or 18th (depending on which bit of support you are focusing on) birthday therefore they may still be subject to means testing and financial assessments for things other than a care home. And like I posted, even if they did immediately move to a care home it is more than possible for parents to build up savings of more than £23,500 by saving DLA.