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Dreaded DLA ... renewal lowered ... help with wording please ...

(50 Posts)
frazzledbutcalm Wed 23-Nov-16 12:14:45

Ds has received DLA for 2 years so far ... mrc lrm.

His renewal has just come back mrc ... no mobility. He was refused on the grounds of any refusal to walk is his own conscious decision rather than from a physical condition leading to paralysis. He is intelligent, likes trampolining and riding his bike when available. At age 11 he would not be expected to have full road safety awareness or be able to find his way in unfamiliar places. It is accepted he has perception difficulties but with normal intelligence his guidance and supervision he needs outdoors is within normal range. He may prefer to have reassurance outdoors but this is not a need for guidance or supervision.

Any advice on how to word my response for reconsideration?
He has hypermobility which causes pain in ankles, knees, leg muscles, sometimes hips. His ankles give way A LOT and cause pain, trips, falls. He has SPD which affects his processing of speed, distance of traffic. He also has vision processing blindness which affects his ability to see faces, cars, objects etc. He has to scan areas individually to build up a picture of things.

Trying to be brief, will add more if necessary.


OneInEight Wed 23-Nov-16 15:20:02

You have just reminded me I have got to do ds1's renewal - sob. In the past we have argued needs extra supervision because of risk of absconding and meltdown potentially leading to harm to himself, property of others. We have also argued social anxiety - basically at one stage he wouldn't have gone out the house without parent (or possibly not even then!). Not sure if any of these apply to your ds.

frazzledbutcalm Wed 23-Nov-16 22:19:10

I put in a very well worded claim ... not any different to his old claim. I'm wondering if they've changed the rules for entitlement .. dd1 didn't get any mobility either when she transferred to PIP - despite clear evidence she was entitled to it.

As for ds, my view is that at age 11 most children are able to play out by themselves/with friends and go places by themselves/with friends ... and be safe. Ds does not socialise and rarely plays out due to his anxieties towards others.

I just want to word my response in the best possible way, including as much information as possible.

Good luck with you renewal one

lougle Sat 26-Nov-16 09:56:19

Crossing the road, judging distances, etc., is not thought to be established in the NT population properly until about the age of 13, so the DM is right that most NT 11 year olds wouldn't be expected to reasonably navigate roads (although many can and will - there will always be a distribution curve in development).

Did you break it all down into its elements? So, to me, the needing supervision outdoors thing can break down into:

-how does he find his way around
-what would he do if he was lost
-would he know when to come back
-would he be vulnerable to strangers (moreso than typical 11 year olds) -physical issues

I would do a compare/contrast with NT 11 year olds in all of those areas.

frazzledbutcalm Fri 09-Dec-16 22:53:30

Thanks lougle

We have until the 19th to send in our letter. HOWEVER, today I've received a response from them to say they feel they have enough evidence to complete their reconsideration without hearing from me ... AND HAVE TAKEN AWAY EVERY PART OF THE AWARD!!! So ds has gone from mrc and lrm ... to nothing!! shock

They've said I can still send a letter in and they'll look at it again hmm

Apart from now being livid, I now have to fight both parts of the award. I'm scared now.

lougle Fri 09-Dec-16 23:09:23

Oh dear. So you definitely need to do a complete dot-to-dot comparison between your DS and a NT 11 year old.

frazzledbutcalm Mon 26-Dec-16 23:22:39

Received the decision Christmas Eve to say reconsideration is final, even with all the extra paperwork I sent regarding the mandatory reconsideration they're sticking by their decision and turning down ds award completely!

I'm devastated. He's 11 and is very different to his peers. I detailed everything and compared him directly to other 11 year olds in my response. I honestly can't understand how anyone could read the paperwork and think he's like other 11 year olds.

We obviously now need to go to appeal/tribunal ... who do I turn to for help?

frazzledbutcalm Fri 30-Dec-16 22:21:34

Any more advice please?

brrrr Sun 01-Jan-17 15:25:17

We were awarded mrc, then it got cut at renewal. The DM said that a) autism is not a physical disability, and b) running into the road is a choice.

I appealed, and as ASD is defined in law as being a physical disability (the brain is part of the body, and ASD is a developmental brain disorder thus a physical disability) also running into the road is a result of ds's lack of danger.

We were successful! Got awarded hrc AND low rate mobility, for 5 years instead of the previous 2 year award. DS is now 9, would have been 7 at this time. We got a dud DM the first time who made a clear legal error - so that worked in our favour. I will dig out the letter I submitted as part of our appeal, and pm it to you.
Look at disability rights UK website, either fact sheet 23 or 17 (forget which) it gives the legal definition of terms like frequently, often, constantly, etc. This may seem pedantic but is invaluable for DLA forms.

DS has HF ASD, no hyper mobility, the main issue re his mobility is that we are late for school due to his refusal to get dressed etc in the morning - this is accepted as a mobility issue.

brrrr Sun 01-Jan-17 15:28:18

Interesting that you were not given much time to prepare papers for the reconsideration.

brrrr Sun 01-Jan-17 15:32:29

On tablet now, will send a copy of letter later - I got brief help with it from the la welfare team, over the phone, who gave me the first couple of sentences as a template so to speak.

Good luck, don't let these people grind you down - DMs are unqualified office workers, who have little understanding of these conditions.

brrrr Sun 01-Jan-17 15:34:45

AFAIK, you can get mobility award after age 5, under 5 any child would have a lot of supervision anyway.

frazzledbutcalm Sun 01-Jan-17 17:41:30

Thanks brrr

Ds is now 11, he's been getting mrc lrm for 2 years. To have everything taken away just beggars belief. I put so much detail on the form and reconsideration that I just can't understand how he can be awarded nothing at all ... it really doesn't make sense.

Re the appeal, I literally don't think I can put any further reasons than those stated in the reconsideration, so any help with wording would be great!

What's a DM by the way?

frazzledbutcalm Sun 01-Jan-17 17:42:44

They spoke to senco at school who said ds is normal intelligence and has no care needs through the day. The taking away of the award was based on this 1 phone call.

coffeemachine Sun 01-Jan-17 17:53:51

Re the appeal, I literally don't think I can put any further reasons than those stated in the reconsideration, so any help with wording would be great!

we were refused DLA for DD (autism and severe learning diffs). We weren't even awarded LRC. We got nothing either when we asked for a reconsideration again... I had typed 30 pages in addition to the form, included many reports. Beyond me how they decided to turn us down even for LRC.

I appealed and just referred to the things I said in my original application/reconsideration and why I thing they got it wrong. I did not supply any further evidence or any new reasoning.

They always look at the claims again before it actually goes to tribunal and we got High Rate Care without tribunal but just by "we have looked at your application again bla bla bla".

I really thing some DM are evil or stupid or possible both. We were refused and also refused on reconsideration in Nov/Dec (a few years back). Made me wonder if they had to reach refusal targets and went a bit overboard at the end of the year.

coffeemachine Sun 01-Jan-17 17:54:43


brrrr Sun 01-Jan-17 22:22:04

DM = decision maker. They are just admin people,and it takes 10 minutes to process a DLA form. It took me 14 hours to complete our first one, I have saved the forms so I can refer to them the next time we renew.

Benefits and work website is THE best resource for you now, or welfare rights. B&W has a subscription fee, but this really is an investment, very worthwhile.

brrrr Sun 01-Jan-17 22:40:46

Lots of DMs are indeed fuckwits, or evil.

brrrr Mon 02-Jan-17 15:10:58

Fucking SENCO that is unbelievable angry

coffeemachine Mon 02-Jan-17 16:02:35

They spoke to senco at school who said ds is normal intelligence and has no care needs through the day. The taking away of the award was based on this 1 phone call.

I would not be disheartened by it. A lot of children with ASD mask a school and let it out at home. If DS does not need additional help at school, then what is the Senco supposed to say?

I'd not be furious with the senco but with the DM that they based the entire decision in DS's care needs at school when he needs so much support outside the school.

frazzledbutcalm Tue 03-Jan-17 13:05:27

Ds doesn't have a dx of asd ... I think that's the problem ... sometimes people hear asd and it means something so it's not disputed. Only sometimes mind, dd2 has asd and often it doesn't work that way.

We were told ds doesn't have asd as he doesn't tick all the boxes. They said he has reasonable eye contact, was quiet in the OT group work, couldn't find his place within it, but listened to others and contributed when asked. Therefore no asd hmm. This from the same workers who have said dd1 doesn't have asd as she doesn't tick all the boxes, has a spiky profile ... but would have been given an asd dx if she had been through the system age 6-7! shock

I've lost faith in the system entirely.

Back to ds. I haven't spoken to the senco as I realise she would have given answers to direct questions asked. That creates a very different scenario to what ds might actually be like, or needs in school. Despite this, ds has an Sen pupil profile stating his dx and his needs. He's got an early lunch pass due to his IBS/tummy problems, he has access to the staff toilets due to these needs also, he's to be let out to the toilet without question due to these needs. Senco also won't be aware of the numerous times I've taken ds in through the office in the morning in tears due to anxieties because of changes that are happening in school, the twice he's tripped over his own feet and literally face planted the yard due to hypermobility and leg problems, the time he fell in PE, banged his head so hard he went dizzy, had a headache immediately and was crying but couldn't tell the teacher .Or the time he came out at the end of the day in agony, lily white due to his IBS flare up - he didn't tell staff. The list goes on. There's a difference between appearing to be managing fine and actually managing fine. He's only been in the school since September and hasn't built up any confidence or rapport to approach staff yet.

I'm hoping his case will be looked at again before the appeal hearing and someone with a bit of sense will look at it and realise their mistake.

frazzledbutcalm Tue 10-Jan-17 16:48:26

Well I've submitted my appeal papers. I tried to keep brief and concise but I don't think I managed very well! I'm hoping they re-read the claim and decide before the appeal date. Fingers crossed.

Kanga59 Wed 11-Jan-17 20:35:40

I would get an opinion from an independent third party. You can send additional evidence in at any time before your appeal date. any other professionals involved apart from the senco?

youarenotkiddingme Wed 11-Jan-17 20:52:48

You can also refer to literature that clearly states children with asd (and I'd say like your ds who presents challenges along these lines) can mask at school. Therefore the care they need to unwind afterwards is greater than their peers

frazzledbutcalm Fri 13-Jan-17 15:14:00

kanga we have a care-coordinator who is as much use a chocolate fireguard! She is also his anxiety worker. Also equal is in that department [sigh]
Ds doesn't see anyone for his physical mobility issues apart from private podiatrist. We see Mr Jordan for his Sensory/visual issues, I sent in a report from him. Seemed to make no difference. He sees a paediatric gastroenterologist for IBS. Again letters from her seemed to make no difference.

I was thinking of contacting some kind of disability chartity to see if they could offer advice/help with the appeal ...

youare .. I've always said ds presents like a girl with asd. Dd has asd and greatly masks at school. Ds is very similar to her in the way he masks. But as they've ruled out asd hmm I'm not sure how much weight it would hold to say he masks in the way asd does?

Still hoping they'll reinstate without the need for appeal to go ahead. I just can't understand how he can get mrc, lrm for 2 years then at renewal to come through with mrc, then whole lot taken away at reconsideration confused. Doesn't make sense!

It's difficult to get evidence written down sometimes because whenever you see professionals you don't mention every single difficulty your dc have.

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