DLA spending

[Anonmom812]

My daughter recently was awarded DLA.. She has just turned 16, the award is for £412 every 4 weeks...
She gets £25 a week of it for spending and another £20 a week for her bus ticket.
(I have tried giving it her weekly to help her learn how to budget as when she has it all at once she often tends to spend it all at once and then had none left for the rest of the month)
The rest of the money I split between extra food (she often won't eat the same as everyone else) music subscription for her (her special interest), savings etc (incase she needs clothes or other things etc)

She always gets to the end of the week and has ran out of money so am I being too tight with it?
I don't want to be controlling but I also don't want the money to be wasted on take aways and the corner shop

This is new to us so please any helpful suggestions or thoughts are welcome

Oh dear here we go again 🙄 😬👀🥱

Do you need a shovel there infact @arcticpandas ?

I find it strange that you genuinely don't think that friends and family discuss finances and as part of this DLA payments. I really don't think it's that unusual. When my friends get a new job the will often discuss their new salary or will moan about childcare costs. It's just part of life.

The reality is that some families do use DLA as fun money or to save for their children. It isn't spent on day to day costs for their disabled child. The application for DLA focusses on needs rather than expenses so it is totally possible to have relatively high but inexpensive needs, in the same way that it's possible to have low but expensive needs. The world isn't black and white and there will be lots of families that exist in the grey, where they have a disabled child but don't use all the DLA on disability related expenses.

Mild autism does not result in recieving DLA.
My child is autistic and we do get DLA but I can assure you that this child costs are far higher than my other child who despite being autistic doesn't need as much support (and we don't get DLA for the second child because their needs are less. )

You haven't a bloody clue what life is like or all the additional expenses

Define “disability related expenses”. If I can only work part time because of my child’s care needs, then the mortgage, utilities etc become disability related because without the disability I could work full time and cover it. Taking the kids to McDonald’s because it’s a familiar food they will eat becomes disability related because we’re en route to a family event where they won’t eat anything.

The amount I get in DLA is minimal compared to what I’ve lost in earnings, doesn’t touch the sides, but it means I don’t worry if my child chews a hole in her school jumper, or needs a day home from school. I pay more in tax each month than I get from DLA.

😂😂😂

people really believe this?

As a pp says, it's funny how it only seems to be those who apparently just use it for 'fun money' that seem to just love discussing it.

There's also a difference between family and school mums. Though I can't say I've chatted with family about DLA either and I'd find it strange if they started asking about it.

This is why I said it's a grey area. The reality is that the majority of mothers don't work full time irrespective of whether they have disabled child or not. So you may well claim that working PT is an opportunity cost of having a disabled child (and I don't dispute this) but many mothers wouldn't work FT hours and earn FT wages regardless.

I have two very fussy eaters and have had to do similar emergency food stop offs or avoid certain events altogether knowing my children won't eat there. I have brought packed lunches to parties and declined birthday cake. I have also had countless chewed, lost or destroyed clothing items from my son who is very hard on his clothes, my daughter on the other hand carefully looks after her clothes.

My point is where is the benchmark of 'normal' that we can use to discern the disability premium that a family pays? Do we compare to the so called average family? This is very hard to do as even the most 'normal' of children often have their own quirks and issues that can become very expensive and laborious. Off the top of my head, I know a few of my children's good friends that have severe allergies, many that refuse to go to wraparound care and a school refuser.

Yes.My goodness their comments are, yes showing they don’t understand the process, just dipping in and out, to rant.

Where has anybody suggested that it is just those parents that 'love' discussing it? Some families use the DLA for fun money or to put into their children's savings accounts. The OP on this thread has basically admitted this as she gives her DD some spending money and puts some money in a saving account. There are other threads on MN that suggest the same. It's hardly surprising that this trend is mirrored in real life.

You are fucking nuts when you think you can even loosely compare a 'fuzzy eater' to a severely disabled child.

You almost sound jealous of the money parents of disabled children get. Would you want to swap your fuzzy eater with my severely autistic and learning disabled teen who will need lifelong care? It's great. After all, we get fun money for staying at home as I couldn't have been bothered to work full time anyways.

you clearly haven't got the foggiest clue what you are talking about. if you have nothing meaningful to add, it's sometimes better to say nothing. You just come across and stupid! nothing else.

I've actually never told a single person (IRL I mean) that we get any DLA for DS1. I am sure if people put their mind to it they could see its fairly obvious he is a candidate but I certainly don't say a word about it. Not least because people immediately think you are sponging off the system or have fiddled it in some way. (As evidenced by this thread).

The people who always rush to these threads to claim that multiple people on the school run openly chat about ''fun money'' and/or insist someone they know has a child who just doesn't need it at all. Happens on every single thread.

Some families of course save some of it, how would they otherwise get some of the specialised equipment such as an off road wheelchair, seat to support their child and many, many other things that can cost thousands but aren't covered on the NHS?

Me either.

It's obvious for us because we have a motability car. No one has brought it up either.

Some parents decide to be SAHPs for various reasons, but, for some parents of disabled children, not working isn’t a choice. Even the government recognises that.

Having a fussy eater isn’t the same as a disabled child having a restricted diet or requiring a specific diet for medical reasons. Neither is normal wear and tear/lost items associated with childhood.

Some DC with severe allergies are entitled to DLA. Some who have EBSA/EBSNA, have needs that make them eligible for DLA, too.

Who are all these people who just casually run their mouths off to anyone who will listen that they’ve exaggerated on DLA forms, get loads of money for their mildly disabled child that they use for home renovations and Botox 🤣

I once saw on another thread someone claiming a school mum had both her kids diagnosed with autism and ADHD, but she openly admitted that it was really just too much screen time and no boundaries and bragged about getting trained professionals to diagnose them 😭

Yes, the favourite one, they know someone🙄
So much misinformation and yes, lies.
I have experience, working with people with disabilities, it’s demoralising, for them to be around people, who think it’s ok to lie, spread, hate, misinformation… l don’t understand why some people feel the need to do this.

What on earth is 'mild autism'?

If you met DS you'd probably think he was 'mildly autistic', I was still up with him until 2am, he's not washed or changed his clothes for over a week and he won't go to school currently because he can't cope with a peer liking something he disapproves of and this caused him so much anxiety he was self harming.

What a bizarre response!

Firstly, you don't need to be seriously disabled to qualify for DLA. When talking about a grey area, it's pretty clear that nobody is talking about the severely disabled.

Secondly, I was responding specifically to some examples of disability costs that were suggested by another poster. Having a parent working PT, having to go to McDonald's before a family function and chewing on clothes. Many families will have experienced a lot of this and the associated costs. This is why it's a grey area. There will be children that only just qualify for DLA and those that just miss out. There will be many children with expensive quirks and issues that aren't considered officially disabled but certainly aren't considered 'normal" either . There will equally be some that are considered disabled and qualify for DLA but have needs that can be met more cheaply. The world isn't black and white.

Exactly!

Or they suddenly become a medical expert on Autism/ADHD/whatever it may be and claim that the child doesn't need DLA.

@arcticpandas and have you tried getting help from CAMHS? I don't think we have a functioning CAMHS service locally anymore. God knows what the threshold for them actually doing anything is, we've had three referrals to them - fought for each time - three assessments, and nothing else.

To be honest I think one of the issues for DS is how many adult professionals of one kind or another have been involved with him, he's got attached to them then they disappear. He's lost a lost trust in the adults around him, including us, which is really sad. He likes the private counsellor he's seeing, and frankly when he was talking every day about wanting to die, staying in the quiet room in school and telling staff every day he was in school that he wanted to die and was talking about self harm, how long do you think we should have waited to do something? From previous experience with DS (and my 20 years working in the mental health voluntary sector) CAMHS doing anything seemed unlikely.

Many parents, usually mums, will chose to work part time or not at all. I don’t have that choice - or certainly didn’t until very recently and even then it relies on a very flexible employers to make it work.

My DD is 14, she still needs supervision after school, in fact her school transport won’t drop her off unless they physically hand her over to another adult. There is literally no after school childcare for kids over 14, so I need to be home. My job allows me to work from home, but if it didn't I’d need to reduce my hours. That’s a necessity, not a choice.

While many mums will work part time, it’s not normal to be dealing with repeated night wakings for older children, interrupting sleep with a knock on effect to the next day.

In the absence of disability I could chose what my kids eat in the road, bring a picnic or buy a sandwich for much less (and be more healthy than) McDonalds. McDonalds is literally the only safe food for my DS out of the house, so it’s that or nothing - not a choice.

One of the difficult things for parents of disabled kids is the “every child does X” or “I have that too”, very often it’s not the action or event itself that denotes additional need, it the frequency and severity, and the cumulative impact of it all happening at once, most days. Most people will have some quirk with their kids but multiple challenges all at once, consistently and constantly is a very different thing.

Luckily for you, you don’t need to identify the point at which normal care or need tips into something more - the government have done it for you.

I am truly sorry for your situation which is not very different from my own. I don't work because I'm on stand by for DS1 non stop. He was out of school for 2 years due to anxietyinduced OCD and violent outbursts.

When I say mild autism I was talking about children on the spectrum that have certain autistic traits which don't necessarily mean that they have needs that come with higher costs. My DS will never be fully independent that is the sad state of things. I want there to be a wellfare state but I don't like when people are playing the system in order to get benefits when it's not warranted whatever benefiits we are talking about.

Costa for us. I've spent a lot more time in Costa than I'd ever have willingly chosen to. If we plan on going anywhere new we always check out where the Costa is first. If DS starts getting overwhelmed that's where we head.

I've also just been made redundant, and I think that's why DS has chewed his favourite hoody to rags - he's worried I'll have to get a job out of the house. I'm worried as well, I don't know how we'd have managed without me WFH, flexible hours and a supportive employer.

Also have never told anyone that I get DLA/PIP for DD.

She has woken me the last 2 nights and I’ve had to pick her up from college early 2 days this week. Which is actually quite a quiet week for us.
I do try and find work that fits around this. She is worse at the weekends without the structure of school/college.