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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To apply for DLA for an autistic child

94 replies

Jamtomorrowandthenextday · 15/08/2024 10:09

My child is autistic, high functioning, copes well but struggles a bit socially. They really cannot cope with busy environments thronging with people, people shouting, pushing shoving etc, struggled with high school, became a school refuser. We asked the school pupil support whether private school would make a difference, she said yes, calmer environment, butter pupil behaviour, fewer traumatised kids lashing out. My child now attends a mainstream private school and it has been utterly transformational.

We pay for the school ourselves. We could probably apply to the council for funding with the back up of the state school they did attend but tbh we work full time in stressful jobs and are tired of the endless fighting that is associated with trying to get help for a SEN child. We can afford the private school fees but doing so does mean we cannot quite less the lifestyle we otherwise would annd are frustrated that the state couldn’t provide our child with a suitable learning environment. We pay our taxes, the state we’re not able to educate our child.

So, chat on the radio yesterday about the number of people who claim DLA for ASD. It’s not means tested. We currently receive no benefits whatsoever. AIBU to put in a claim for DLA in the hope that it would in some way to help mitigate the school fees? It wouldn’t have occurred to me to do so, but people do claim it (and I’m quite annoyed at being made to pay VAT on school fees, when I would dearly love to be able to use a state school but can’t). Can anyone who currently claims say whether we’d be likely to get anything?

OP posts:
x2boys · 15/08/2024 18:19

Nowordsformethanks · 15/08/2024 18:17

I also think disability benefits should be means-tested. The fact that the likes of David Cameron or whomever could successfully claim DLA for their child is a joke.

David Cameron, s child was profoundly disabled and died in childhood there's nothing funny about that.

LadyKenya · 15/08/2024 18:18

I agree. While there are indeed genuine claimants (so if you are, then this isn't about you), for many others, DLA (Medium or High Care and High mobility) and the disabled child element of UC have become the new 'having 7+ kids to get more benefits money'.

Since the 2 child benefits cap, the number of disabled children has increased. The cap doesn't affect them when it comes to disability payments so it makes sense that this is the new avenue for some.

Even though I personally would not encourage the OP to try to claim DLA, I think that your post is just peddling the usual nonsense tropes that benefit bashers come out with.

clarepetal · 15/08/2024 18:18

You should definitely apply.

x2boys · 15/08/2024 18:18

Nowordsformethanks · 15/08/2024 18:13

I agree. While there are indeed genuine claimants (so if you are, then this isn't about you), for many others, DLA (Medium or High Care and High mobility) and the disabled child element of UC have become the new 'having 7+ kids to get more benefits money'.

Since the 2 child benefits cap, the number of disabled children has increased. The cap doesn't affect them when it comes to disability payments so it makes sense that this is the new avenue for some.

You do realise you need evidence ?
They don't just take your word for it?
Sure i see loads of people on the Facebook DLA group I'm on trying to claim for the most tenuous of reasons, and some put in multiple claim,s most don't get anywhere with it though

JaneFallow · 15/08/2024 18:18

coaltitsrock · 15/08/2024 17:03

what would you call it then? you surely recognise that someone 'HF', often with a job, family etc has next to nothing in common with someone with ASD who is nonverbal, needing lifelong round the clock care etc. Nobody is saying you don't have challenges but they are lightyears away from those at the severe end.

Edited

Some autistic people also have learning disabilities, others don't. Whilst learning disabilities can give rise to particular needs, so to can autism. It is not a competition and there are no neat lines to draw.

Nowordsformethanks · 15/08/2024 18:17

I also think disability benefits should be means-tested. The fact that the likes of David Cameron or whomever could successfully claim DLA for their child is a joke.

HMTheQueenMuffin · 15/08/2024 18:16

Do it. I did not put in a claim for 9 years after DS1s diagnosis because we 'could afford it'. Finally we put one in last year and got middle rate care and lower rate mobility. It's beenm life changing because we can now access a load of therapries.

The process is very rigorous and traumatic. I cried all the way through it because once I started collecting the various reports and evidence I realised just how disabled he is by his autism.

Apply. If he is not eligible you will not get it. If he is, then you may.

Nowordsformethanks · 15/08/2024 18:13

brightyellowflower · 15/08/2024 15:55

I think YABU only on the basis of you want a nice quiet school for your child. Who can actually function (highly as you describe). Who doesn't want a nice quiet school for their child! Sooner we do away with private schools the better. By your own admission, you can afford it. You just want an free input due to the VAT going on!

For me, autistic children receiving DLA should be non verbal with very high needs. I actually think it's a bit of a joke how many families there are with 3+ 'adhd/autistic' children receiving DLA and then claiming carer's allowance on top.

I have a disabled child. Trust me. I wasn't going to risk making any more like him! (love him, but my god a truly disabled child is hard work) and I don't claim carer's allowance even though everyone tells me i'm 'entitled' to it. I'm self employed and make my own way.

Feel free to all kick off. It's just my opinion. But it is quite factual where I live at least that claiming DLA seems to be the way to go to get as much 'free' money as possible. Very little seems to be going to the child as honestly there's not actually that much wrong with them. They should do the same assessments for children as they do for adults imo. The money should go to children and adults who genuinely couldn't cope without it. Not to a parent who just wants a free ride towards their private school fees.

I agree. While there are indeed genuine claimants (so if you are, then this isn't about you), for many others, DLA (Medium or High Care and High mobility) and the disabled child element of UC have become the new 'having 7+ kids to get more benefits money'.

Since the 2 child benefits cap, the number of disabled children has increased. The cap doesn't affect them when it comes to disability payments so it makes sense that this is the new avenue for some.

EndlessLight · 15/08/2024 18:10

nonverbal, needing lifelong round the clock care

Being high functioning does not necessarily mean someone is verbal and doesn’t need 24/7 care. All high functioning means is someone doesn’t have a co-morbid learning disability. The problem is people use it to mean something else. People can be ‘high functioning’ and have high support needs.

severe end

The autistic spectrum is not a linear spectrum from mild to severe.

LostTheMarble · 15/08/2024 17:41

coaltitsrock · 15/08/2024 17:03

what would you call it then? you surely recognise that someone 'HF', often with a job, family etc has next to nothing in common with someone with ASD who is nonverbal, needing lifelong round the clock care etc. Nobody is saying you don't have challenges but they are lightyears away from those at the severe end.

Edited

I agree with the poster you’ve quoted. It’s not about ‘functioning’, it’s about needs. My ex has a job, we have children, has own home etc. He ‘functions’ enough to go to a professional job and take adequate care of the children on his time. He also can’t manage bills, has to be told to keep up hygiene/grooming, can’t learn basic skills that don’t interest him (so meals are all beige and easy), panics at loud noises, hates anything out of routine, basically can’t do anything that isn’t part of his ‘auto pilot’ lifestyle unless told and broken down into steps. And it’s getting worse over the years, a few of these issues were small or even non existent in his early 20s (probably why he flew under the radar as autistic). I’ve mentioned before, if people don’t understand the difference between ‘functioning’ and ‘needs/support’, read about Anne Hegitey from The Chase - there is a fantastic interview where she (a very intelligent woman no one can deny) ended up needing a support worker because life became too difficult to manage every day.

Autism as a spectrum is fluctuating, it’s not a set level for life. To deny those who are ‘high functioning’ to be as equally autistic as those with low needs leads to a lot of problems later in life.

coaltitsrock · 15/08/2024 17:03

Ti7ch · 15/08/2024 16:12

Because it minimises the issues we have

what would you call it then? you surely recognise that someone 'HF', often with a job, family etc has next to nothing in common with someone with ASD who is nonverbal, needing lifelong round the clock care etc. Nobody is saying you don't have challenges but they are lightyears away from those at the severe end.

Sirzy · 15/08/2024 16:15

brightyellowflower · 15/08/2024 15:55

I think YABU only on the basis of you want a nice quiet school for your child. Who can actually function (highly as you describe). Who doesn't want a nice quiet school for their child! Sooner we do away with private schools the better. By your own admission, you can afford it. You just want an free input due to the VAT going on!

For me, autistic children receiving DLA should be non verbal with very high needs. I actually think it's a bit of a joke how many families there are with 3+ 'adhd/autistic' children receiving DLA and then claiming carer's allowance on top.

I have a disabled child. Trust me. I wasn't going to risk making any more like him! (love him, but my god a truly disabled child is hard work) and I don't claim carer's allowance even though everyone tells me i'm 'entitled' to it. I'm self employed and make my own way.

Feel free to all kick off. It's just my opinion. But it is quite factual where I live at least that claiming DLA seems to be the way to go to get as much 'free' money as possible. Very little seems to be going to the child as honestly there's not actually that much wrong with them. They should do the same assessments for children as they do for adults imo. The money should go to children and adults who genuinely couldn't cope without it. Not to a parent who just wants a free ride towards their private school fees.

Ignoring most of your judgemental post but I don’t see how anyone who has ever applied for DLA can be under even the faintest impression it’s given to to children with “not much wrong with them” the bar is set high for getting DLA and even to receive lower rate care a child will still have to be proven to have significantly higher care needs than their peers.

BestZebbie · 15/08/2024 16:14

YANBU to apply for DLA, but it is unlikely to cover your private school fees!
(but every little helps...)

Ti7ch · 15/08/2024 16:12

Jamtomorrowandthenextday · 15/08/2024 15:35

Without meaning to be confrontational, why not describe an autistic person as ‘high functioning’. My child is not offended by the description and it neatly sums up the challenges they face. Just to say autistic could mean anything.

Because it minimises the issues we have

x2boys · 15/08/2024 16:09

brightyellowflower · 15/08/2024 15:55

I think YABU only on the basis of you want a nice quiet school for your child. Who can actually function (highly as you describe). Who doesn't want a nice quiet school for their child! Sooner we do away with private schools the better. By your own admission, you can afford it. You just want an free input due to the VAT going on!

For me, autistic children receiving DLA should be non verbal with very high needs. I actually think it's a bit of a joke how many families there are with 3+ 'adhd/autistic' children receiving DLA and then claiming carer's allowance on top.

I have a disabled child. Trust me. I wasn't going to risk making any more like him! (love him, but my god a truly disabled child is hard work) and I don't claim carer's allowance even though everyone tells me i'm 'entitled' to it. I'm self employed and make my own way.

Feel free to all kick off. It's just my opinion. But it is quite factual where I live at least that claiming DLA seems to be the way to go to get as much 'free' money as possible. Very little seems to be going to the child as honestly there's not actually that much wrong with them. They should do the same assessments for children as they do for adults imo. The money should go to children and adults who genuinely couldn't cope without it. Not to a parent who just wants a free ride towards their private school fees.

Also why are you so angry ?DLA is non means tested a child either qualify, s or they don't you also need evidence to back you up.
I'm on various DLA Facebook groups and I don't disagree that there are plenty of chancers,putting in applications for the flimsiest of reasons, but they generally don't get anywhere with them.

rosiejaune · 15/08/2024 16:07

Jamtomorrowandthenextday · 15/08/2024 15:35

Without meaning to be confrontational, why not describe an autistic person as ‘high functioning’. My child is not offended by the description and it neatly sums up the challenges they face. Just to say autistic could mean anything.

Read about it for yourself. Most autistic adults (including me) do not agree with functioning labels.

Whereas children haven't necessarily had the chance to consider those arguments yet, and often use the medicalised terminology given to them by parents and professionals by default.

x2boys · 15/08/2024 16:04

brightyellowflower · 15/08/2024 15:55

I think YABU only on the basis of you want a nice quiet school for your child. Who can actually function (highly as you describe). Who doesn't want a nice quiet school for their child! Sooner we do away with private schools the better. By your own admission, you can afford it. You just want an free input due to the VAT going on!

For me, autistic children receiving DLA should be non verbal with very high needs. I actually think it's a bit of a joke how many families there are with 3+ 'adhd/autistic' children receiving DLA and then claiming carer's allowance on top.

I have a disabled child. Trust me. I wasn't going to risk making any more like him! (love him, but my god a truly disabled child is hard work) and I don't claim carer's allowance even though everyone tells me i'm 'entitled' to it. I'm self employed and make my own way.

Feel free to all kick off. It's just my opinion. But it is quite factual where I live at least that claiming DLA seems to be the way to go to get as much 'free' money as possible. Very little seems to be going to the child as honestly there's not actually that much wrong with them. They should do the same assessments for children as they do for adults imo. The money should go to children and adults who genuinely couldn't cope without it. Not to a parent who just wants a free ride towards their private school fees.

This is why there are different levels of DLA to reflect the different levels of need
I have a non verbal teen with very complex needs and he gets the highest levels in DLA in both care and mobility

But that doesnt mean I don't recognise that children whose needs are not aa complex aa my child might also meet the criteria for DLA
We also don't know wether the Op,s child will qualify yet as a diagnosis alone doesn't guarantee an award.

brightyellowflower · 15/08/2024 15:55

I think YABU only on the basis of you want a nice quiet school for your child. Who can actually function (highly as you describe). Who doesn't want a nice quiet school for their child! Sooner we do away with private schools the better. By your own admission, you can afford it. You just want an free input due to the VAT going on!

For me, autistic children receiving DLA should be non verbal with very high needs. I actually think it's a bit of a joke how many families there are with 3+ 'adhd/autistic' children receiving DLA and then claiming carer's allowance on top.

I have a disabled child. Trust me. I wasn't going to risk making any more like him! (love him, but my god a truly disabled child is hard work) and I don't claim carer's allowance even though everyone tells me i'm 'entitled' to it. I'm self employed and make my own way.

Feel free to all kick off. It's just my opinion. But it is quite factual where I live at least that claiming DLA seems to be the way to go to get as much 'free' money as possible. Very little seems to be going to the child as honestly there's not actually that much wrong with them. They should do the same assessments for children as they do for adults imo. The money should go to children and adults who genuinely couldn't cope without it. Not to a parent who just wants a free ride towards their private school fees.

x2boys · 15/08/2024 15:45

Jamtomorrowandthenextday · 15/08/2024 15:35

Without meaning to be confrontational, why not describe an autistic person as ‘high functioning’. My child is not offended by the description and it neatly sums up the challenges they face. Just to say autistic could mean anything.

Some people get offended by it because autism present,s differently in different people and, some people can be " high functioning "in some areas and not in others there are of course people like my son who can't function at all
The whole language surrounding it is a mine field ,think you can describe your child. how they want to be described

Jamtomorrowandthenextday · 15/08/2024 15:35

rosiejaune · 15/08/2024 14:31

YABU to use the term "high functioning". But not to apply for DLA.

Without meaning to be confrontational, why not describe an autistic person as ‘high functioning’. My child is not offended by the description and it neatly sums up the challenges they face. Just to say autistic could mean anything.

OP posts:
x2boys · 15/08/2024 15:32

SatinHeart · 15/08/2024 15:08

YANBU to apply. As pp have said, you have to demonstrate particular needs and the amount of time per day that they take up. I'm not sure they would accept school fees as something you needed the money for.
We get DLA for autistic DC - the specific care needs we included in the application were eating issues, toileting issues and lack of danger awareness.

Yoy can use the DLA money for whatever benefits the child ,that could be a contribution to school fees ,Horse riding, or help towards house hold bills no one checks .

Bluevelvetsofa · 15/08/2024 15:29

I know you said you were exhausted with everything, but if you were to apply for an EHCNA you might ultimately have an EHCP and might be able to choose the school he’s already at. I know there are some restrictions in terms of private schools, but if you could bear it, it might help too.

SatinHeart · 15/08/2024 15:08

YANBU to apply. As pp have said, you have to demonstrate particular needs and the amount of time per day that they take up. I'm not sure they would accept school fees as something you needed the money for.
We get DLA for autistic DC - the specific care needs we included in the application were eating issues, toileting issues and lack of danger awareness.

rosiejaune · 15/08/2024 14:31

YABU to use the term "high functioning". But not to apply for DLA.

IllSeeYouOnTheDarkSideOfTheMoon · 15/08/2024 14:09

NataLi112 · 15/08/2024 12:38

Hi @Jamtomorrowandthenextday this sounds like my son’s profile. Would you be able to share with me here or privatly which private school your child attands? We are currently looking into private school transition. So if anyone has reccomendation for private achools that provide social support would be greatly appriciated!

Where are you based? My son goes to one in Stockport which is amazing - feel free to message me for details x