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

@Swiftea you said you are “both high earners.” You realise don’t you, that many many parents of disabled children have their career torpedoed by dint of their child’s needs? In theory I could have got carers in but at the level I was working at, I was expected to travel and be away at least 30% of the time plus an unpredictable working pattern. I simply couldn’t find a way to keep it all going.

A previous poster made the correct assertion that if section F of the EHCP is specific and quantified then the LA must provide it. But if they can’t recruit and no one wants the job, then what? At one point, waiting for various assessments there was no one to do my child’s intimate care at school so I had to do it, which in effect meant I spent my days in the school car park between wees and poos etc, contemplating my shattered yet once glittering career.

So do I claim DLA/PIP? Fuck yeah.

The best part was "ended the claim after a few years...."

What a judgemental post. There are families who need that ‘generous’ allowance and if this is how you feel why did you apply ? The disability benefits system doesn’t award money unless the need is there, and in the case of child DLA that need has to be significantly more than that of a non disabled child, so why are you blaming children who need the support for the state of public finances ? If you had investigated before you ended the claim you would know that when children migrate to PIP (currently age 16) it will be significantly harder to secure an award because the eligibility criteria are totally different. I don’t think there’s anything particularly altruistic about denying your child the support they were assessed as needing

I've just had another look. It's 3 years after the incident then 3 years after that. But individuals under 18 there is no time limit.

Which is most definitely not what i thought it was. But the last time we looked at it properly he was around the age of 10.

He's 15 now, so worth looking into further. I started a SAR around my medical notes about 3 years ago then it became too distressing for me. And DH said it would not actually change anything anyway- he's still disabled, so what's the point.

I'm going to reconsider where we stand on this now, thanks @FiveCustardTarts

But if they can’t recruit and no one wants the job, then what?

Then they must fund independent provision (and pay far more if necessary to make it more attractive). As LAs have been shown time and again, their duty under section 42 of the Children and Families Act 2014 is absolute and a lack of resources or staffing is not a lawful excuse for failure to provide SEP detailed, specified and quantified in F.

Well, she did...and despite her shock and disbelief stayed claiming for a few years, apparently.

Has anyone ever had a successful outcome as a result of cahms? I fear people are banking on this (pointless service) to help them. I took my son about 15yrs ago and bloody hell it was utter shit that I knew already

This. Well said.

Judging everyone by her own child's level of need. As anyone who works in this field/has a child with disabilities (I am the former and not the latter) knows, criteria is need based not diagnosis related. Not the first poster on this thread to tell us all that her child with x diagnosis doesn't need so why does another child with same diagnosis need? What angered me much, much more though was so shocked were they at their award they took 3 years to decide they no longer wanted to claim- whilst also basically inferring in the post that obviously all these people claiming are getting it too easy. As someone who supports parents all the way to tribunal hearings it is a bit more than I can stomach tbh.

Yep I know this. Chapter and Verse. But getting carers who I could trust, who could turn up consistently, and yet also work around MY work pattern, proved impossible. The stress of not knowing if they would be there on top of my career, was more than I could stand and that was even with independent providers. It wasn’t just a financial issue, it was also the sheer rigmarole of getting the LA to do even its most basic duty. 2 full JRs, almost annual appeal, provision missing from drafts without explanation, tribunals kicked down the line over and over - managing that alone is a full time job.

It took 27 months to get some
speech therapy commissioned despite my submitting a cast iron report by one of their own therapists who does private work. (£800) and then prep for appeal, and the tribunal date kept getting kicked back as the LA asked to do their own assessment (which I agreed to) and then couldn’t find a therapist to do it so kept asking for stays. I started pre action protocol and played hell with the LA and head of therapy services and turns out they hadn’t commissioned any speech therapy AT ALL so they were told in Case Directions to either find someone or use my report. So they used mine, and complained it was now out of date.

The upshot of it was I got his therapy in section F but by that point I had also been self funding it in the interim. I did this with DLA and by selling some jewellery.

Please don’t think that SEN parents aren’t trying EVERYTHING.

I think it would be more accurate to say that the assessment criteria are different for PIP because it’s a working age benefit. As an outreach worker l can tell you that things on the ground look very different to what the statistics say. A lot of my time was taken up with reconsideration requests and tribunal applications for those migrating from DLA to PIP, and l definitely think it’s much more difficult to secure an award of PIP than any other disability benefit.

DLA is supposed to be for additional things that the recipient needs. I would not expect it to be used for clothes or food as that’s what parents would ordinarily be providing in the first instance for any child regardless of need.

Please don’t think that SEN parents aren’t trying EVERYTHING.

Where on earth did I say that? I didn’t. I am a parent of DC with SEN, and I have also supported numerous parents to navigate the system over the years. I am perfectly aware of how the system is. My post was about you saying what do they do if they don’t have resources/staff. It sounded like you didn’t understand the LA’s duty was absolute and could be enforced. I was simply explaining is is and it can be.

Fine in theory. @Soontobe60 But did you miss the bit where people say they have to provide additional food or clothes due to needs? My DS has sensory issues around both food and clothes. The clothes bit means that- for example- I spent over £300 last year on having super soft base layers made for him and sewn to his school uniform otherwise he could not tolerate them. I'm not doing that for shits and giggles. No parent is. It amazes me that people wholly fail to see that what is their reality is not everyone's reality.

The problem is the system is made so hard to navigate that even the most loving parents who want nothing but the best for their child can find themselves being lost in the system and unable ( through no fault of their own) to navigate the system to get what the child needs and is entitled too.

It’s wrong but so much does rely on parents being able to fight the system to get the provision.

Agree. I worked in the same field - disability outreach worker - and the notion that disability benefits are too generous is laughable, as is the assertion by some that they are too easy to claim. And nothing gets up my left nostril faster than people blaming disabled people for the state of the economy. !!

Different yes, but you used the word harder in the pp, hence my reply. I was simply pointing out most rising 16s have their claims increased. I also support parents of disabled DC. Day in, day out. Many do have their claims increased on transfer. No, not all. Yes, some have to appeal.

It was more at the previous poster who seems to think that the MPs have a magic wand. And your post seemed to intimate that I don’t know the legal position when sadly I do. Solidarity fist bump 🤛

We have his first PIP assessment on Friday. I can’t think straight I’m so worried about it, although I can’t quite articulate why. Any tips would be gratefully received.

Sadly too many parents do. My post did intimate that because that is how your question asking ‘then what’ came across. Apologies if that wasn’t the case.

Did you take a photocopy of the form? It can help to reread that and if it is a phone assessment have it to hand during the assessment. Sometimes assessors can be pushy about DC having to answer (or be present if it isn’t an F2F assessment) even if you are appointee, but stand your ground.

It can be spent however the recipient chooses to spend it to support their needs. Some with sensory issues need more and varied clothing. Some who have incontinence have higher bills because of extra bathing and laundry, and have to buy padding. You clearly have no idea of the extra cost involved, or that to be eligible for child DLA there has to be provable need significantly in excess of the needs of a non disabled child.

Thankyou - it’s face to face and they want us both there. He’s verbal but not reliably so and can’t report so he will say whatever pops into his head or what he thinks the other person might want to hear. He also has continence and toileting/smearing issues and I’m uncomfortable about getting into the horrrible details of that, in front of him.

I use my pip to replace my shoes because due to the I walk, they wear out quicker. If I can't find shoes with velcro, I then have the extra expense of lock laces

Some of us also use pip for food because we can't chop vegetables,etc safely. We have dietary needs too which makes food shopping more expensive

Would you not?

My son eats his clothes. He also soils his clothes. He smears food on his clothes. Do you know how many extra clothes my son needs compared to his peers?

My son eats tiny amounts of certain foods, he eats on average 8 times per day.

My washing machine runs constantly.
My bath is used multiple times throughout the day.

Not only does my son’s DLA go towards clothes and food, it goes towards the electric, gas and water bill as well.

For F2F assessments, DS has to attend, but you can still speak. Some assessors would try to insist DS does all the talking, but you can stand your ground. I would specifically tell them DS is not a reliable reporter/lacks insight. You could make some notes to pass to the assessor if DS won’t cope with discussing some things. Did you request changing to a telephone assessment? If you didn’t, in future you can ask to. Or even a paper based assessment because it sounds like DS will have a fair bit of evidence.