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Dla mobility Autism

(19 Posts)
Fkhdr Sat 05-Sep-20 19:46:13

Hi

I was wondering if anyone can give me some advice. My DS was diagnosed with autism when he was 2 and things were fine, we tried to be positive but he’s just turned 4 and we are really struggling. His sensory issues are becoming a big factor in is daily life that we can barley leave the house. We can’t have any noise in the house, like nothing. We’ve tried using headphone but because of sensitivity to touch he can’t bear anything on his head. He’s starting to become violent as he is non verbal and doesn’t understand what we say and we don’t understand what he’s trying to say. He barely eats, he’s lost so much weight these pay few months that we hoped it was a phase but nothing seems to be getting better. He was using pecs but that’s non existent now. He’s biting and hitting his baby brother and we just don’t know how to discipline him. I really need help getting out and about as he craves the outdoor, it’s his only release but I just can’t on my own. He can’t bare using public transport coz of all the noise and different people. It becomes too much for him and he gets violent. He’s ran out in front of buses and cars in the past putting me and his dad in danger. He’s so strong that I cannot restrain him anymore when he does things like this. I am only 5 foot and he’s already 4 foot so he’s catching up really quick.

We love our beautiful little boy so much but we just don’t know how to help him. I have been on such a long waitlist for OT and covid happening has knocked me even further down this list.

I wanted advice on the mobility component of the dla and if anyone has been successful in claiming this at the age of 4 ? It would make life so much easier for us and less scary for our little boy who’s really struggling in this big wide world

Any help is appreciated

Thanks

OP’s posts: |
Cabinfever10 Sat 05-Sep-20 23:12:12

I would put in a claim form for DLA. If you fill it in as honestly as possible don't minimize your DS's difficulties you will need to fill in the whole form and if you get an award it will be made up of a care component and or a mobility component how much depends on what rate they decide he needs.
Do you have specific questions about it?

lauryloo Sat 05-Sep-20 23:16:15

You should be able to apply under the severe mental impairment rule

The charity Cerebra have a great dla guide on their website with info on how best to fill in the form

Willbob Sat 05-Sep-20 23:41:32

My son got it from 3 I think under smi, I have a friend who has a child with autism who gets under virtually unable to walk. As above cerebral have a good guide on it. From memory there are a handful of criteria that they have to meet. I think; needing care in the night, having to be watched all the time they're awake, no social understanding, a diagnosis, needing to be restrained and extreme behaviour (could be others). Have a look for the criteria and then point out if your child fits them and show evidence if you can. You use reports and assessments or get professionals to write a letter. Have you got an ehcp in place? This should detail everything you need to back up your application. If you haven't regardless of dla start the application x good luck x

SoulofanAggron Sun 06-Sep-20 01:28:42

What you need for these forms (as somone who has claimed DLA/PIP long term- I dont know about claiming for a child, just in general) is a consultant/professional who is prepared to back you up.

Put in any evidence you have, letters from consultants etc, that is the important thing as after all any of us can say anything. If you no longer have some letters you can request duplicates of some.

If you haven't seen/talked to a consultant or other professional for a while then arrange to as a matter of urgency- if you say it's needed it should be brought forward or they will have a chat with you. This will generate a clinic letter which you can then include. Really mention everything possible to the consultant and stress how difficult everything is- check the criteria for the DLA elements and mention them when you speak to the consultant/doctor- he cannot eat without assistance/encouraement, dress himself etc etc, you can note down the different topics mentioned on the form and bring them up. Any difficulties with continence etc, anything the form mentions that you can apply.

If at any point you find the professionals involved with your son's care seem unsupportive, don't be afraid to change consultants or teams.

These forms are effectively 1/3 stuff you write on the form, 1/3 professional evidence, and 1/3 any in-person or other assessment needed. The third that you write needs evidence/consultants backing up what you say for it to count for much.

If at first you don't succeed, appeal, and if need be have another go when you can. Best wishes. xxxxx

BlankTimes Sun 06-Sep-20 02:27:50

Who diagnosed your son? You need to report any regressions to them. You mentioned "He was using pecs but that’s non existent now." and you've also mentioned that he's stopped eating. Is there anything else he could do but has now stopped?

If you have no direct contact, then ask your GP to contact them urgently on your behalf.

That should get you some help and provide up to date information to help your DLA claim.

ThirdTimeUnlucky Sun 06-Sep-20 04:25:24

I've had DLA mobility (low rate) since my son was diagnosed with Asperger's aged 5.
What they look at is anything that is not normal for a child of that age. So, as your DC is now walking (not in a pushchair), he has additional needs/extra care not typically needed for NT children.
I applied without any help and apart from the initial reports of his diagnosis, they took my word about his difficulties/issues.
My DC is almost 12 and still gets mobility, albeit the reasons have changed over the years.
From what you have described I think you'd get it no problem.

reader108 Sun 06-Sep-20 04:33:00

Filling DLA forms can be sole destroying. Base your answers on the worst day my son got high rate care and low rate mobility when he was 5. He's 14 now mid rate care and the same mobility.

Fkhdr Sun 06-Sep-20 09:11:13

Thank you all for your responses, I should’ve added that he does get high rate care component of dla but got knocked back for the mobility side when he turned 3. I applied for it on advice of his portage worker but I wasn’t surprised he didn’t get it at the time as his difficulties were manageable. He does have his 6 month review with his paediatrician coming up (it was cancelled a few months ago due to covid) so will be bringing all of this up with her. He was also in the middle of an assessment for a EHCP but that was also put on hold due to covid and then the summer holidays started.

The forms are so overwhelming, has anyone used a CAB advisor? From what I’ve read on forums, they want specific jargon to be used in the forms. I think I make the mistake of putting in my feelings and telling a story of his day and not straight to the point.

OP’s posts: |
dollypops15 Sun 06-Sep-20 09:17:39

Hi my daughter is 6 with ASD ADHD OCD and anxiety. She gets middle care and no mobility. Her Godmothers mum, is a decision maker for DLA and she has told me to appeal the mobility side as she should be receiving lower rate mobility. I woild put your paper work back in explain all the sensory issues

Peony9876 Sun 06-Sep-20 09:31:42

My son who has got autism and another genetic condition has had low rate mobility since age 4. We did have to appeal to get it but I get the impression that most claims get turned down and then accepted on appeal. They originally refused it becuase they said he did not have a physical impairment however on appeal they accepted that autism does impact on his ability to walk due to the sensory issues.

Last year we were also successful (again after an appeal) in getting him a blue badge. This has been far more useful to us than the lower rate mobility as we can park straight away rather than search for a space which was increasing his anxiety. If you get high rate mobility you can automatically get a blue badge but my undetstanding is that this is very hard to get for autism.

Spin66 Sun 06-Sep-20 09:42:49

administrativeappeals.decisions.tribunals.gov.uk//judgmentfiles/j4305/CDLA%201034%202014-00.doc

This decision references the regulations an criteria that would be applied for the higher rate of mobility.

SkaraBrae Sun 06-Sep-20 10:00:44

We have low mobility too.
If you look online, there is a guide to filling in the form written by a dad of a child with autism.
It gives you tips on how to answer mobility questions.
Most of them focus on the physical side- (can you child walk, what distance etc)
You are advised to actually cross out the answers suggested and just write 'child consistently and unpredictably refuses to walk'.
Then you describe the danger he puts himself (and others) in.
You have to think of worse case scenario and write it down as an added attachment- ie your child could get run over, throws himself on the floor in street/carpark, would lash out and hurt someone on public transport etc

My son goes go a SN school and they have an amazing family liaison person who helped me fill the form.
She basically told me- think of all the things have to do for your son that you don't for other children and write it down. Send the bad stuff, not the positive school report etc I ended up typing up an added 30 pages with details on all the answers (see added comments question 1/2/3 etc)

It's depressing but we ended with high rate, low mobility and eventually a blue badge.

SkaraBrae Sun 06-Sep-20 10:04:50

Just to add they have now changed the rules for the blue badge.
It was only available for high rate DLA but it is now accepted for Low rate and autism- check the DVLA website/ how to apply for blue badge and you will get more information.

BlankTimes Sun 06-Sep-20 13:11:12

Guide to help with filling in the DLA form
cerebra.org.uk/download/disability-living-allowance-dla-guide/

Fkhdr Sun 06-Sep-20 21:53:40

Thank you everyone for your advice. It’s very much appreciated especially since me and my partner have been doing this on our own with our son and just winging the best we can.

Skarabrae I tried to find the information of getting low rate and and getting a blue badge on the gov website but couldn’t find it. All literature says you have to have high rate mobility in order to be eligible. Would you be able to post a link of the page you found this on please?

Can anyone give some advice on my son biting his brother? I know he’s not doing it maliciously, he just doesn’t like him being in his space but I don’t know how to make him realise it’s not ok especially when he’s making him bleed from biting so hard.

Thanks

OP’s posts: |
apapuchi Sun 06-Sep-20 22:02:43

My son just turned seven and has been getting HRC and LRM since he was 5. He was 'awarded' HRM at the beginning of this year after I did a change of circumstances.

You need to download the decision maker guide and cross reference everything you write against the criteria. I believe it's HRC, need for restraint, constant supervision, being unsafe to be unsupervised in multiple (or all) circumstances/settings. Does your child attend a nursery or school? Whether a specialist or regular setting they might be able to produce a letter stating his needs and what they need to do to keep them safe.

My son is also non-verbal, attends a special school and has a disability social worker. I believe it was her letter of support for HRM along with the report from his paed and school which made the COC successful, although I did write a very long accompanying letter (in addition to the form) going into every detail.

Am always happy to help, it's a hard fight but one which can be won. Don't give up, you know better than anyone what your child's needs are.

Peony9876 Mon 07-Sep-20 04:42:00

@Fkhdr You don't automatically get a blue badge if you get low rate mobility but should have a fighting chance of winning the application with the new changes to legislation which mean that blue badges can now be used for 'hidden' disabilities
www.gov.uk/government/news/people-with-hidden-disabilities-can-access-blue-badges-for-the-first-time-from-today

SkaraBrae Mon 07-Sep-20 07:25:46

Re mobility I was advised to go to the DVLA website.
There is a link there on how to apply for Blue Badge.
It will refer you back to your local council and you will get a short questionnaire to fill in.
Prior to September 2019 you would be told low mobility was a 'deal-breaker'.
Most councils have now amended it and have changed their blue badge application format.
I have high rate care low rate mobility and got the blue badge on my first application.

Re the biting our son did it for a while- it feels so upsetting, not just painful.
Have you tried giving him a chewy sensory something that he can bite on to release his frustration? We have old clothes that we cut up as 'cloths' that he carries around with him.
When he gets stressed he bites on them.

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