To apply for DLA for an autistic child

[Jamtomorrowandthenextday]

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?

Agreed.

I think high functioning is perfectly acceptable as descriptive terminology. There is recognition that current use of autism as an umbrella term is not helpful in many cases and there is a push particularly in America to have in redefined in the next edition of the DSM. This was always going to be an issue when Asperger's was dispensed with.

If you start means testing you get to a position whereby those who are just over the threshold end up struggling most.

disability benefits are often also a gateway for other support.

means testing someone’s disability would be dangerous.

Thanks, we are based in Islington London

The reason why I am swithering is that I agree with you. I don’t think those with mild disabilities ought to get benefit. But then I also don’t think I ought to have to fork out an astronomical amount of money each year just for my child to be schooled in a manner in which they can cope with - and I really do.

The reason why I am swithering is that I agree with you. I don’t think those with mild disabilities ought to get benefit. But then I also don’t think I ought to have to fork out an astronomical amount of money each year just for my child to be schooled in a manner in which they can cope with - and I really do.

that's not what DLA is for though and it won't meet the descriptors.

You might find your daughter doesn't meet the criteria if you feel her needs are mild
Its up to you she will
l either qualify or she won't and you will need evidence to back your claim up ,a diagnosis alone won't guarantee an award.

Of course OP isn’t BU to use that phrase to describe her son. It’s absolutely her right to do so. Please don’t police others’ language like that.

When you apply describe the worst days/scenarios. It's hard to do but you have to remember the assessor does not know your child so you need to be fully transparent about the challenges they face. Include all documentation from professionals outlining issues

Depending on your income you may get carers too.

Someone with mild disabilities wouldn’t mean the criteria for even Lower Rate care though (which is less than £30 a week) the bar is set high for a reason.

Don’t do that. You have to be realistic so you have to make it clear how often those worse cases happen not make it seem like it is always like that

@Sirzy what I mean is as a parent it can be difficult to describe your child in a seemingly negative way but you need to be honest about their struggles and the day to day impact.
And you absolutely need to include documentation as evidence too.

My daughter receives DLA but doesn’t have a diagnosis. I used the cereba guide when filling out the form.

The only evidence we had was a few bullet points from her nursery describing her behaviour. My LO would also be classed as high functioning, she’s about to start at an academically selective private school.

It sounds like you stand a god chance of receiving an award.

I would definitely apply. Our school Senco advised us to write the application thinking of DS on a worst day- I can understand why, because you do have to manage with days like that. Don't feel as if you and your son don't deserve DLA because they are 'high-functioning,' disability is not a one fits all issue and many 'high-functioning' young people have more 'invisible disabilities' such as social communication issues and mental health challenges which as a parent you absolutely have to offer extra care for. My DS is very clever but his OCD can flare up and I have to look for advice online and learn how to help him manage intrusive thoughts for instance.

Apply for it and if you are successful use the funds for an advocacy service or solicitor to apply for an EHCP.

Our son is also in a mainstream private school- his catchment local authority school is very poor and Ofsted highlighted big problems with bullying. His private school is small and nurturing and much less overwhelming. As an intensely quiet autistic child he would have been very vulnerable in a school where bullying is rife. Like you, in a way, we see DLA as a benefit which offsets the cost of school fees.

i got PIP for my ASD teen (high functioning .. apologies!). She can’t manage public transport, so it gets her to college, and we are funding driving lessons, so she can get a car.

Nor is there anything funny about a multi millionaire accessing tax payer funded benefits. It doesn’t matter what the benefits are for. He didn’t need them. He could have self funded. And then the fucking wanker made it harder for people to access those same benefits who didn’t have a 1000th of the money he had.

You might as well apply for it as you have nothing to lose. Not sure if it is still the same, but certain things used to hold more sway one being statemented (now having an EHCP) and the other having a diagnosis at a young age. I think also being seen by multiple professionals eg occupational therapist/psychologist.

It’s needs based not diagnosis based - so describing what your DC is limited by and evidencing that.

No harm applying but with from your description their additional care needs are not sizable. You cant get DLA to help with school fees. They are to allow you to meet care needs which greatly outweigh that which would be expected for a child that age. For example my 4 year old has limited mobility, mental age of approx 18 months, incontinent, severe epilepsy, cerebral palsy, possible autism, visual impairment. He needs 1 to 1 care 24 hours a day. He gets high level care and mobility. To get high level care they need to require a lot of care all day and overnight. Medium rate needs some additional care overnight. Not sure criteria for low rate.

Our son has Autism and ADHD and we claim. I feel no guilt about claiming whatsoever. In any decent society kids like my son would be entitled to OT and SALT support from the state. We get fuck all from our local NHS trust so our DLA has been used to access private therapies we couldn't afford otherwise.

My rationale is if I can use state resources to help DS now, we have a better chance of him being able to lead an independent, fulfilling life as an adult and not be a burden on the state during his working years.

HRC is for help or supervision throughout both day and night, or for DC who might not have 12 months to live. MRC is for frequent help or constant supervision during the day, supervision at night, or someone to help while DC is on dialysis. You can get MRC without any care or supervision needed at night. LRC is for help for some of the day. Usually considered 1+hr a day.

Definitely apply!
We get DLA for our son who's autistic & non verbal. Also get carers allowance for him. The application form is ridiculously long and the wait once you've sent it off can be months but it's well worth it

I think the other thing to consider is that many parent caters lose out financially because they need to meet the needs of their child. I had to step back from a career because my son could not cope with a long school day with breakfast club and after school club. As a precious PP has said, it is very difficult to access any kind of support, so I have also gone on numerous courses and had to self educate myself on things like social stories and behaviour management, which is all taken away earning capacity as such.

Yes, absolutely apply and don't feel bad for it either.

My 7 year old has ASD and higher care needs. He also has ADHD so requires higher stimulation through activities, is clumsy etc.

The money has helped a lot with clothing (he always wrecks his clothes), shoes (he needs a pair almost every month), all the additional activities he needs for stimulation (swimming, sports clubs, trips to zoo, farm etc). Helps to replace items he clumsily breaks around the house on almost a daily basis. He also only eats specific foods which are a lot dearer to buy so it helps!

The rest of the money thats left goes into an ISA for him which he can access when he is 21. I also have a separate savings account where £100 a month is transferred and this is for him also when he is old enough to need access to it.

I spent years not applying due to "pride" and I struggled with money, and feeling upset that I couldn't go out and about doing or buying things he needed. Now I dont have that worry and its brilliant.