Dla

[Senmother]

What form of autism is entitled to dla high rate care ? Because my son is autistic and 3 years 5 months non verbal, no use of gestures, doesn't follow orders , directions. Constantly twirls spins. Is still in nappies. Isn't aware of danger. He is in his world.

Please help

Hi OP
When they assess for DLA, I think they are looking for any additional support your child would need in comparison to a typically developing child of the same age. My child is twelve now, but he has had DLA since he was three (middle rate care, high rate mobility). He also has ASD and a few other co-morbitities and was not dissimilar to your child at the same age, except he also had mobility problems. I think there is a very high threshold for high rate care.
You might find this guide helpful. cerebra.org.uk/download/disability-living-allowance-dla-guide/
When you fill in the form, it is useful to think about what the worse case scenario is on any given day / activity.

He's always fidgety and climbs everywhere isn't aware of danger. I'm constantly watching him supervising him .outside I use a rein over him as he will run to random directions and into the street not knowing a car is dangerous. He doesn't feed himself I always prompt him to he doesn't. When I ask him to dance jump and play he doesn't. When I point to show something to him he doesn't look at that direction. And in nursery he eats non edible stuff. Sand , paint, and needs constant supervision. Puts stones into his mouth . We waiting for his 1 to 1 because he needs it. Nursery said he needs high care and supervision at all times too . If I apply for dla what will we get I'm confused and scared

HRC is for DC who need help or supervision throughout the day and night, or they are terminally ill.

Yes, when you fill the form in, it will ask you about night care needs and how many times you have to get up at night etc

My DC was similar - did not feed himself until he was 7. I am still blending food for him now due to extreme sensory processing problems. He had a 1:1 at nursery, but did not qualify for high rate care DLA.

@zen1

My DC was similar - did not feed himself until he was 7. I am still blending food for him now due to extreme sensory processing problems. He had a 1:1 at nursery, but did not qualify for high rate care DLA.

Do you get mobility ?

@zen1

Yes, when you fill the form in, it will ask you about night care needs and how many times you have to get up at night etc

Ok thanks

There's no form or autism that entitles you to high rate care. The important thing is not the diagnosis but the amount of care that the child needs over and above an average child the same age.

This is obviously very subjective and a lot depends on how you phrase things on the form.

DS has pretty high functioning autism but he gets middle rate care because he likes to chew nerf bullets and he doesn't like to go to sleep.

The need for me to pop in a few times during the night and redirect him to a safe chew toy and that was enough to show that he "needs repeated attention at night with bodily functions".

Breathing as opposed to choking to death counting as a bodily function!

Had I been able to convince them he also had a need for "frequent attention" or "constant supervision" during the day: that would have been the high rate.

(Middle Rate is either the day conditions or the night conditions. High Rate is both)

The best thing to do s have a good look at the qualfying criteria (a pp has posted up a guide or you could also use this one and have a good think about how your DC might fit into it.

Then fill in the form with that in mind. Or better still, get an experianced welfare rights advisor to do it for you.

At 3 you would only be able to get HRM, you can't get low until 5.

There are two ways you could potentially qualify for HRM - under the 'virtually unable to walk' criteria and the 'SMI' rules. To be awarded HRM under the SMI rules you need to also be in receipt of HRC. Have a read of this booklet.

@dashoflime

There's no form or autism that entitles you to high rate care. The important thing is not the diagnosis but the amount of care that the child needs over and above an average child the same age.

This is obviously very subjective and a lot depends on how you phrase things on the form.

DS has pretty high functioning autism but he gets middle rate care because he likes to chew nerf bullets and he doesn't like to go to sleep.

The need for me to pop in a few times during the night and redirect him to a safe chew toy and that was enough to show that he "needs repeated attention at night with bodily functions".

Breathing as opposed to choking to death counting as a bodily function!

Had I been able to convince them he also had a need for "frequent attention" or "constant supervision" during the day: that would have been the high rate.

(Middle Rate is either the day conditions or the night conditions. High Rate is both)

The best thing to do s have a good look at the qualfying criteria (a pp has posted up a guide or you could also use this one and have a good think about how your DC might fit into it.

Then fill in the form with that in mind. Or better still, get an experianced welfare rights advisor to do it for you.

Thank you so much the words you used is very smart and I will put that into consideration because my son chews constantly on everything and I am up at night also checking on him when he is up. The nursery even has proof that he puts everything into his mouth due to sensory need etc they too watch over him constantly

Yes, I still get mobility for him. Initially it was because he physically couldn’t walk the required distance. Now it’s because he is extremely vulnerable and has very high levels of anxiety (won’t go anywhere without an adult) and also because he has no awareness of danger (would go with anyone who talked to him, couldn’t run away from harm etc).

Glad to be of help.

"Repeated attention" is three times or more
and "during the night" is betweeen 11pm and 7am.

So if you have to check he's not chewing something dangerous at (say)11.30, 12.45 and 1.00...thats the night time conditions met.

@dashoflime

Glad to be of help.

"Repeated attention" is three times or more
and "during the night" is betweeen 11pm and 7am.

So if you have to check he's not chewing something dangerous at (say)11.30, 12.45 and 1.00...thats the night time conditions met.

Ok thank you so much. Wording is very important to these people. Thank you so much

@zen1

Yes, I still get mobility for him. Initially it was because he physically couldn’t walk the required distance. Now it’s because he is extremely vulnerable and has very high levels of anxiety (won’t go anywhere without an adult) and also because he has no awareness of danger (would go with anyone who talked to him, couldn’t run away from harm etc).

How old is he now ? Ok glad you getting mobility. Sen parenting is very hard. And the children deserve their dla for extra care costs. I wrote he refuses when out walking, licks and touches everything. Isn't aware of danger. My son will also walk with a stranger... he holds everyone's hands. And touches everyone and their bags etc

He is 12 now. He would also walk off with a stranger as he is very trusting and has no instincts that people can have bad intentions. When younger, he would wander off, e.g in the supermarket, assuming we would find him. He also wouldn’t tell us if anything ‘bad’ happened to him. He can talk quite well now, but could only say a couple of words at three.
Good luck with your application.

I've just been awarded HRC for my DD, I applied when she was 3, though she's just turned 4. She has an autism diagnosis as well as GDD. DD is non verbal, in nappies and can't dress or feed herself, so needs constant support. She wakes up several times during the night, and does not understand that it's not playtime, so I have to be up with her until she finally settles down again. She has support from the SENCO at the nursery, although I am still going through the EHCP process for her.

I haven't been awarded anything for mobility for DD, though as the decision is so recent, I will still be in time to ask for a mandatory reconsideration, followed by an appeal, if necessary.

@Starseeking

I've just been awarded HRC for my DD, I applied when she was 3, though she's just turned 4. She has an autism diagnosis as well as GDD. DD is non verbal, in nappies and can't dress or feed herself, so needs constant support. She wakes up several times during the night, and does not understand that it's not playtime, so I have to be up with her until she finally settles down again. She has support from the SENCO at the nursery, although I am still going through the EHCP process for her.

I haven't been awarded anything for mobility for DD, though as the decision is so recent, I will still be in time to ask for a mandatory reconsideration, followed by an appeal, if necessary.

That's great and fight for her rights. She is very similar to my sons situation .

Make sure you describe every aspect of support that you provide for your DS over and above what a typical DC of his age would be doing @Senmother. I'm so on auto-pilot I hadn't realised until I sat down to go through it all just how much support DD needs on a day to day basis.

One thing that I found useful was to note down over about a week or so everything I did to support DD. I then spent the next couple of weeks writing it all up initially on a separate piece of paper, then transferring to the form they sent to do so.

I am happy to answer any further questions which may be of help to you.

@Starseeking how long did it take to get your decision if you don't mind me asking our little ones sound exactly the same my boys only 3 diagnosed autism gdd, and monitoring for adhd x

@Jneill2021 it was 11 weeks from when I submitted the form and supporting documents in August, to receiving the first payment in October.

However they backdated the payment to when I had originally rung to have the form posted to me, so the payment I received was actually 16 weeks HRC.

@Starseeking thank you, that's great news for your little one, they seem to be really scattered with time frames at the moment as ino a few people who have been award at just over 7 weeks then some that have taken around 10-11 x

Sorry to jump on this thread. My soon to be 2 DD has had issues picked up from 12 months. Having waited 6 months to see paediatrician we did so at the start of October. Basically he said he can tell me she is autistic with a lot of sensory issues. He told me to apply for DLA, but it has taken me a while to get my head around things and I’m just unsure if she would get it considering she will only turn 2 in a couple of weeks. She doesn’t speak, has no sense of danger, I can’t let her out of her pram at all and she throws awful tantrums, banging her head etc. Everything goes into her mouth, I have to check on her all night as she chokes sometimes vomits with putting her hands in her mouth, she is clumsy, spins around and falls all the time. Cannot communicate. Doesn’t point, wave, can’t feed herself. Has massive issues with the bath it’s awful! Screams for hours if she has to be washed. Won’t eat only certain things and skips are the thing at the minute tantrums constantly if she doesn’t have them. She makes little eye contact. Doesn’t sleep well eats sand! I could go on. My question is children at 2 need constant supervision etc. But from my own personal experience DD is on a different level. Waiting lists are so long here Doctor said it could be 2 years before formal diagnosis. I have her with SALT waiting for OT but bigger waiting list for them! Is it worth my while applying for DLA or will they consider her too young?? I will have reports from SALT and Paediatrician. The extra money would help me with a private OT etc as I don’t know what to do! Any advice will be appreciated.

You might as well apply?

I’ve seen this free guide recommended a lot: cerebra.org.uk/download/disability-living-allowance-dla-guide/

Yes, I will check this out, I’m just thinking at 2 they may turn us down as a lot of care needed anyway. Thanks 😊

@MumsyMum31

Sorry to jump on this thread. My soon to be 2 DD has had issues picked up from 12 months. Having waited 6 months to see paediatrician we did so at the start of October. Basically he said he can tell me she is autistic with a lot of sensory issues. He told me to apply for DLA, but it has taken me a while to get my head around things and I’m just unsure if she would get it considering she will only turn 2 in a couple of weeks. She doesn’t speak, has no sense of danger, I can’t let her out of her pram at all and she throws awful tantrums, banging her head etc. Everything goes into her mouth, I have to check on her all night as she chokes sometimes vomits with putting her hands in her mouth, she is clumsy, spins around and falls all the time. Cannot communicate. Doesn’t point, wave, can’t feed herself. Has massive issues with the bath it’s awful! Screams for hours if she has to be washed. Won’t eat only certain things and skips are the thing at the minute tantrums constantly if she doesn’t have them. She makes little eye contact. Doesn’t sleep well eats sand! I could go on. My question is children at 2 need constant supervision etc. But from my own personal experience DD is on a different level. Waiting lists are so long here Doctor said it could be 2 years before formal diagnosis. I have her with SALT waiting for OT but bigger waiting list for them! Is it worth my while applying for DLA or will they consider her too young?? I will have reports from SALT and Paediatrician. The extra money would help me with a private OT etc as I don’t know what to do! Any advice will be appreciated.

Same like my son who is diognosed with autism at age 2year and 8 months. He gets dla middle rate now but I have appealed because I believe he should get the high rate care because he has severe autism and I have all proffesionals backing us up and school too which is his change of circumstances and proof of extreme care needed. He now has a 1to1 too