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

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.

sorry what autism traits come with higher or lower costs???

Issies with clothes such as needing seam free socks, certain screenings at the cinema instead of kids go for £1 etc.

Why are we quibbling about whether or not the parent of a disabled child might have chosen to work part time otherwise? DLA doesn't cover the loss of income from employment. If I do manage to get DLA for my daughter, it would amount to only a fraction of what I was earning when I was able to work.

Neither do I. I can only think that they have swallowed wholesale, what the media has fed them, and believe that disabled are receiving a lot of money, and they resent that. It does not help any disabled person, when the rhetoric doing the rounds at one point, included spinning the outright lie, that people were getting a motability car, just for 'mild anxiety'! Disabled people are just low hanging fruit, for these people to vent on.

How many people do you recon are playing the system?
Prob not as many as who could claim but haven't

If you genuinely know someone claiming fraudulently any benefit then report them with your evidence.

Otherwise shut up
Life is fucking hard - I have spent most of today dealing with emails trying to get educational support my child need. I don't imagine today will.have been anymore successful than all.yhe other times I have tried but not got support in place.
Today I could do that as I had help with child.

I was a high earner in a professional role I haven't been able to do in years. I didn't choose this life

My child didn't choose this life.

Do you know who makes the choices the LA who would rather save a few £ than provide my child with an education

Yes I claim DLA - do I think we need it - absolutely
(We need a truckful.more.support which we don't get)
Do I tell.people.- no way it's hard enough day to day without someone judging for.a snapshot they see on a day we manage to leave the house.

Your situation is different as you are viewing from a place of privilege thinking that somehow you are better than us who claim

You mean those of us who shit loads of masking to try and fit in?

We still have costs. I can only wear certain socks. That would be those without seams. I then developed Raynaud's so needed warm socks too

I can only eat certain foods and thats even before I go into the fact that I have to limit the amount of milk I consume

Then there's the amount of wasted money because I've gone somewhere and swiftly left because there's too many people, it's too bright or too noisy

I find certain hand creams (my hands get dry from washing them) are too greasy or they feel too heavy. I've found a brand that works but it's expensive. Ditto lip balm

I could go on and on about the costs of so called "mild Autism"

Oh how I wish l’d said that !! Well done.x

Yep, meanwhile, back in the real world show of hands please for how many people found ‘fun money’ deeply, deeply offensive.

The government hasn’t done disabled people any favours either. In every speech and interview in the run up to announcing the disastrous changes proposed for disability benefits, not one minister or spokesman made the distinction between sickness benefits - designed as income replacement to support those who can’t work due to illness or disability, and mostly means tested - and disability benefits, designed as universal support for the extra cost of living with significant disability.

It doesn’t bode well for disabled people that ministers can’t - or more likely won’t - make the distinction because if it’s all lumped together the savage nature of the changes can be sold to the public that much easier. That people can be so easily led to turn on some of the most vulnerable in the country as is evident here is real cause for concern. The amount of ignorant shite spewed onto these threads from people who have no experience of disability and clearly no desire to learn is off the scale.

Sorry for the rant but after over twenty years as a disability outreach worker I have supported people with disabilities which would make those ‘contributors’ want to lie down and die, and for whom the reduction, or worse still, the withdrawal of these benefits would be a disaster.

Our "fun money" gets used on new pants and trousers regularly , lots of laundry cleanser and washing powder to clean all the wet laundry. So much fun. Living the high life every day🙄

‘Fun money’. Some people clearly don’t recognise their own privilege. Rather like the ones who think the needs of any child can be met in any school.

Yeah, same here. Have you ever noticed the number of threads questioning disability benefits lately, and yet there isn’t one questioning child benefit or the astronomical sums that can be paid for child care via UC ? As an outreach worker I regularly came across parents claiming up to £1700 a month for childcare - that’s well over twice the maximum daily living allowance on PIP and child DLA but no-one questions it.

I think they absolutely do recognise it - and it blinds them to the fact that there are others who aren’t so fortunate. And instead of thanking God they don’t need these benefits, they’re here bitching about those who do.

In over twenty years as a disability outreach worker I never once came across disabled people or their families using disability benefits as ‘fun money’. And DLA/PIP assessments focus on need and then translate that need into the likely costs to the disabled person. That’s the fundamental purpose of it. These benefits are not handed out like sweeties, and the awards are paid at different levels depending on need.

People don’t generally discuss what disability benefits they get these days because they know they will face a barrage of intrusive and insulting questioning as to why they ‘deserve them’. What do you imagine ‘disability related costs’ to be exactly ?

Yeah or who think you can just trot off to CAMHS and it's FREEEEEE!!!!!!!!

My mid teen DD receives DLA, middle rate care. She is costly due to her disability and I can't work in a role at the level I'm capable of. I can't work outside the home at all, and I need complete flexibility to support her in her schooling and in co-regulating several times a day. I visit her between 1 - 5 times per day in school. I resettle her 2 - 4 times per evening / night and prompt her through every step of getting ready most mornings. On the face of it, she is a high-functioning, low-care needs autistic child but that's because she masks so much. She can mask so effectively because she has:

• Seam free socks, pants and bras including a particular brand of period pants
• Ear plugs and coloured overlays
• A diet that meets her sensory needs - unusually, she is sensory seeking with food so will only eat strong flavours / interesting textures. Rocket, salmon, Stilton, marmite, toffee, chillies, limes, grapefruit.
• Regular exercise including long bike rides, football 3-6 times per week, pull up bars and gym equipment
• Emotional literacy lessons (one step down from counselling, really - these alone cost £60 a week)

I guess some of the DLA money goes on stuff like pre-diced onion so I can claw back some of the hours and hours of time I spend in her room or supporting with homework (from body doubling all the way through to scribing, depending on what is needed).

I watched that autism and school programme last night. Every parent (mum) had to give up their job. No extra costs my arse.

DD1 was in special education provision from age 4 - 22; she was with children and young people with statements/EHC plans. She’s lived since then, apart from periods at home, in specialist care provision with other severely disabled young adults.

I also belonged to a number of local support groups for parents of children with SEN, and ran one myself.

I have never met any parents, who described DLA as “fun money”. Generally, parents either used the DLA to put towards the extra household costs, special interests, private therapy or independent professional reports for tribunals.

As for adults with ADHD getting PIP, I can’t see how people who are supposed to have a disabling condition, but in fact are apparently not disabled by it, would qualify for PIP, unless they told bare faced lies? I don’t see fraud as a worthy example for the rest of us to follow?

I had to give up my job as well. But I know many who live normal lives as well. It's very individual. But that cost of one parent not working has nothing to do with dla- if it had then that would be much more reasonable.

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)

So you keep £232 for those things? Yeh I think you’re being a bit tight with it

Of course it has. If your child's needs are such that you cannot maintain full time (or even part time) employment, DLA is key for most families (I appreciate there are always some who are much better off and wouldn't need DLA) to pay the bills. I don't know a single family with a child work complex needs where both parents are able to work full time (and I know a lot of families in the SN world as both DC have ehcps and are in special schools).

Please don’t tell us you’re another poster who really believes that PIP assessors who are all medical professionals, are so gullible that they will swallow these ‘bare faced lies’ wholesale with no medical evidence to back up what the claimant is saying. Everything written on the application form and claimed in the face to face assessment has to be backed up with evidence. Assessors aren’t stupid, and neither are the DWP. The assessments are based on need, translated into cost. There are rigid rules for doing so and I find it baffling that so many people think these benefits are just handed out wholesale for next to nothing.

Surprised some of you aren't pip assessors given that like them you claim to know so much

It has everything to do with DLA. The loss of income as a result of one parent having to become a carer, is directly attributable to disability. The purpose of DLA and PIP has been explained several times so I don’t know why the discussion is still going in this direction. The spending of the benefit is not, and has never been intended to be limited to spending on disability equipment, or other disability relatable items or services. The assessment recognises that daily life in general costs much more with significant disability, and the process is designed to estimate the likely extra cost in terms of need.

You only have to look at the names of the benefits we’re discussing. Disability Living Allowance. Personal independence payment. The benefits are designed to give disabled people more autonomy in how they spend the money to overcome the specific problems they face in their everyday lives and stay independent. Personally I’m bowing out of this thread now because there are only so many times the same thing can be repeated before you realise you’re talking to the wall in many cases.

My final contribution is this. If you are not disabled and don’t care for anyone who is disabled then you have absolutely no business telling anyone with a disability how they should be spending their benefit money. Disability is not one size fits all, it’s individual and no disability affects any two people in the same way. Disabled people and their families and carers, are the ones best placed to decide where the most cost lies and how best to address that. End of.