Mobility claim refused- dwp saying autism behaviours are a choice

[Doodlebug12345]

Hi, our three year old son has been diagnosed with severe autism. He has significant/severe developmental delays in all areas, no speech, poor understanding of others speech (assessed at level of a six month old), hyper mobility and sensory processing disorder. He starts at a specialist autism school full time in September this year as it is felt this is the best environment for him. He currently attends nursery two mornings a week with 1/1 support.

He is unable to walk more than a couple of metres outdoors before being overwhelmed by noises, sights, textures which then results in him headbanging pavements/melting down and needing to be carried. He gets stressed immediately wearing reins and sits down screaming, he tries to run off, steps into roads, etc. We now have a disability buggy as he is too tall for his Maclaren techno but he struggles to spend long in this as he feels exposed. It is impossible to go anywhere on foot. Getting from the front door to the car results in drama and attempts to bolt off in the opposite direction.

I spent huge amounts of time sending in reports from his psychologist, paediatrician (who did a supporting letter stating that his walking difficulties were directly caused by autism and he was classed as virtually unable to walk), speech therapist, nursery, occupational therapist, multi agency assessment team etc. I followed the dwp criteria for mobility and autism and sent pages of evidence for each of their criteria.

He was initially given high level dla before we had a firm diagnosis, they have continued the dla at high level but have knocked three years off the time running on the award.

His mobility has been turned down because the assessor feels that he is able to walk but is making a conscious decision/choice not to. They also have incorrectly stated that my son wears piedro boots (he doesn't, just wears specialist insoles to support his ankles/arch) and that this means he can walk as he would not have any need for footwear!! My argument is that my evidence shows that all my son's decisions are made by his autism. He isn't consciously choosing to scream hysterically in his sen buggy because the wind is blowing in his face or headbanging the pavement because he doesn't understand what is happening as we go from the car to the portage group entrance.

Cerebra have advised to ask for a mandatory reconsideration and then appeal if needed which I will do. Has anyone else been turned down on similar grounds and if so, what was the outcome on appeal? Many thanks.

[adrianna22]

Hmm this is a strange one.

The DLA office told me that children will be awarded ( if they felt) the mobility part by age of 5.

[twinkcat]

I have only claimed now that ds is over 5, I was told they would not consider it before 5. But this may not be true, I am no expert on these things. Good luck with your appeal

[fairgame]

Adrianna you can't claim the LRM until the child is 5 but the HRM can be claimed from the age of 3.

[pastizzi]

They definitely cannot be allowed to say that refusal to walk is a choice. That shows an incredibly poor understanding of autism! I know many, many children with autism who have been awarded hrm. Including my own ds1, although I have to admit I didn't brave an application until he turned 5.

For ds's claim I argued that his autism is essentially a physical disability, as it all stems from brain damage, or at least arrested development of the brain. His sensory issues (for example) mean that his trouble with walking is far from a conscious choice!

[hazeyjane]

I don't know about mobility claims wrt ASD, but had to point out that the Piedro boots thing is hooey - ds wore Piedro boots when he couldn't walk!

[ouryve]

The NAS used to have some very good advice on how the rules criteria for HRM can apply to children with autism. They've changed that bit of the site, now, but are still quite clear on the matter
www.autism.org.uk/living-with-autism/benefits-and-community-care/benefits-for-children-with-autism/dla-for-children-under-16/dla-for-children-the-mobility-component.aspx

Specifically, for being virtually unable to walk:
This criteria is for children who have a physical disability which makes their ability to walk very limited. If behavioural issues are caused by something with a physical origin then these behavioural problems can be taken into account. It has been shown that autism is a disorder of brain development and so has a physical cause. If behaviour caused by autism means that a child’s practical, physical ability walk is so limited that they can be said to be ‘virtually unable to walk’ then they can qualify for high rate mobility under this rule.

[Doodlebug12345]

Thank you for the advice, I will have a proper Mumsnet search on this later tonight. It makes me so mad. The consultant letters state that my son is incapable of making conscious choices or understanding safety/consequences/rewards/bribery etc, he can't even recognise his own name half the time. How can he make choices when he hasn't got a clue what is happening in the world around him?

I'm determined to go to appeal if need be. It shouldn't be this way for parents of autistic children and hopefully the more who appeal, the more carefully the applications will be read. It's wrong that so many children get turned down purely to save money as the dwp know most parents haven't got the energy or confidence to appeal whilst spending every moment their child is awake keeping them safe. There needs to be properly trained staff making these decisions and it should be uniform, not just based on who assesses your paperwork. Rant over.

[senvet]

Appeal certainly.
Does anyone have access to the guidance given to the assessors?

If that shows that the assessors should be following the NAS line, then a complaint might also be in order.

Good Luck

[Doodlebug12345]

Yes, I read the dwp assessors guidelines really carefully and referred to them cross linking it to my own son's medical reports and letters. I don't know how much clearer I could have been, I tried to make it idiot proof!! Their own examples state that a child who has some good days (I wish) but more bad days walking wise would qualify. I will definitely complain as they have blatantly ignored paediatrician letters when stating the first reason for turning us down (autism = conscious choices) and the second reason that if a child has shoes on their feet, then they are capable of 'proper' walking is bonkers! Does anyone know if a complaint would be separate to my mandatory reconsideration letter?

[adrianna22]

Oh I see fairgame! thanks for letting me know.

[cansu]

I had an identical decision a few years ago for ds. I appealed and got two additional letters one from GP and one from social worker. On the morning of the appeal, the DWP gave in and said that they had made a mistake. Their rep said he didnt understand why we had been turned down. So don't give up. I think they just think you will give up and go away if they turn you down.

[Firsttimer7259]

We are in the same boat exactly. The NAS link and ouryve are spot on. I spoke to the caseworker to see if she'd reconsider before going to appeal - according to her my daughter is choosing not to speak because she had some words between ages 2-3. Dd (5) completely non verbal and almost non communicative for years now.
I've handed it over to an advocacy org because it's too upsetting. Meantime no blue badge - makes life even harder.

[Rjae]

You have to appeal. It's often granted the second time round. I believe it's backdated to the date of the original claim. Too bloody ridiculous imo in your circumstances that they put you through this.

[MummyTheBlueengine]

Is it the case that because of his autism, sensory and such and such disabilities he experiences severe discomfort (such as ...) when working, so severe in fact that he refuses to walk? In that case they should be discounting any ability to walk... No? Or are they arguing the discoimfort is not severe? How can you explain that it is not reasonable to expect your DS to ignore this discomfort, grind his teeth and go on?

[MummyTheBlueengine]

Are those Assessors' guidelines available anywhere publicly?

[youarekiddingme]

I also agree that you qualify under the virtually unable to walk. It can awarded for children who are under a state of arrested development of which autism qualifies under this statement.

I'd start with a reconsideration request and ask the professionals to write a supporting letter for the reconsideration stating the dla qualifying criteria specifically. Best of luck

[senvet]

if a child has shoes on their feet, then they are capable of 'proper' walking
At last a cure for everything from spinal injury to Muscular Dystrophy - just put shoes on the child and it will walk.

The news agencies would love to run your story!

So sorry you have to flog through the appeal, but good luck

[firecracker123]

It can all be about how you phrase the application. So for example if you say x refuses to work, they can say the word refuse implies a conscious choice. I got HRM turned down and found a lady called www.dlaconsultant.co.uk. She was brilliant and I won the appeal with her help

[firecracker123]

We also got a psychiatrist and behaviourist letter which helped. If you give them medical evidence they are less likely to ignore it. Just to add I have no affiliation at all with the person I gave you the link to. She is a parent who has been through this herself and is very helpful and reasonable cost wise

[WhatsOnTheMenu]

I was awared HRM for ds - he was 6 at the time and physically able to walk but due to his autism he has major meltdowns and can drop to the ground crossing roads etc!!! I made sure that I provided evidence to all of the points which need to be met to prove severe mental impairment. It was awarded straight away.

[rich4rd83]

Did you win HRM? My boy is the same. Turned down at 3 and wife said no point appealing until 5. Didn't see the point in arguing. Wife thinks he doesn't meat HR even when 5, but he acts like your child and is very tall and hard to manage.

Any advice appreciated 🙏