DLA MR refused, next step appeal. Help!

[Delly1977]

Hi all,
I have an 8 year old boy who has a dual diagnosis of Downs Syndrome and Autism, he is doubly incontinent, non verbal, has a sleep disorder and various other minor complaints. He attends a Special Needs School (where he is an angel!). He has behavioural problems, particularly whilst out and about and has a tendency to just lie down when he feels the need. (On the road, in a shop doorway etc etc) if he doesn't lie down then he will run away. He can also be aggressive, mainly to me but sometimes his Dad too. Never other people.

I applied for a Change of Circumstances as I know that he meets the SMI criteria for HRM. I sent evidence and a letter of support from his consultant.

It was turned down. I asked for a MR, that was turned down too. I have received the reasoning today.

My little boy was turned down because he uses PECS and has SALT input.

I am flabbergasted.

I am obviously going to appeal this but I feel very anxious, I wondered if anyone had been to appeal and if you could talk me through your experience.

Thanks in advance x

I have no experience with appeals. Just checking is it the mobility element you have been turned down for? Or middle rate care?
My son is younger but sounds fairly similar without the sleep issues and we get low rate mobility. He uses Pecs at school, can't see why that's relevant to mobility rate.

Yes its mobility, he has high rate care and low rate mobility. Following a number of dangerous and terrifying occurrences whilst we were out I asked for a change of circumstances.

I have absolutely no idea what PECS has to do with mobility but that's what they stated. I am honestly bewildered. They've disregarded the doctors report stating that he has a severe mental impairment and used his very limited use of PECS as a reason.

He uses PECS to tell me to make animal sounds, or to point to what food he likes etc. Theres a section for him to tell me that he needs his pad changing but he has no idea about that, not does he use the emotions page etc.

I am dreading appeal but he truly fits each criteria under the SMI rules, these rules were made for boys like him. It's so upsetting x

Also they didnt write to school to ask at what level he uses PECS or to ask for a SALT report....they're happy to just decide that he has speech and language input through school so that's fine!

Sounds tricky. On reading your description I thought your child sounded similar to my son but I really don't think my son would qualify on the SMI rules, having just read them.
Possibly he could have qualified under the unable to walk rules but he didn't. We have our current award until DS is 9 at which point I might try and get him it based on that.
Maybe you need to rewrite it to against each of their criteria to try and strengthen your case.

My boy is 9 next month, when he was initially awarded low rate mobility 4 years ago I thought that it was a fair award. Then obviously his behaviour changed soni asked for the chance of circumstances.
I sent them an incident log, an outline of his behaviours, a risk assessment, a letter from his consultant, a diary and then I documented why he met each element of the SMI rules including incidents/examples to back it up.

They chose to ignore all this and focus on the bloody PECS.

They are truly unbelievable.

Appeal, my son was also turned down at coc and mandatory reconsideration he has similar needs to your son although he doesnt have down syndrome ,he does have autism and severe learning disabilities and an under lying chromosome deletion ,I won at tribunal.under SMI,my son also uses PECS I fail to see how this has any bearing on SMI!

Oh thanks @x2boys! Did you send any additional information in? I really cant think of what else I can give, they've had loads.

I'm going to send the appeal paperwork tomorrow, did you have a long wait? How was the tribunal? As scary as it sounds?

I was doubting myself but your post has given me my spirit back so thank you. And sorry for all the questions lol x

I gave them a copy of his EHCP on the day ,tbh they were really nice and indicated straight away they would be finding in our favour ,I brought him with me as I wanted them to see how it was but they said he hey didn't want to see him in case it distressed him but they felt they had enough info ,i I s didn't wait to long ,I think , got the first no last June after sending the COC last March and than a no.again at mandatory reconsideration in around August ,the tribunal was just before Xmas ,but I know waiting times can vary a lot , they just asked a few questions asked me to leave the room and than brought me back in a few minutes later with a written decision,do you have evidence of restraint used in school I believe that ,s s biggie .

And by restraint ,a wrist strap ,harness etc would be evidence .

Brilliant, thanks for that. School are great and they know that hes a bugger for me, they've seen the bruises and scratches hes caused me but they haven't seen the behaviour. They have taken him out a couple of times recently so i will see how they support him. I do know that hes never run off or laid in roads with them...he leaves that particular treat for me!!😳 I'd love the little boy school gets lol x

He has been difficult for the school bus staff, getting out of his seat etc so theyve had an additional strap fitted, we've had to have a perspex screen on our car as he smacks his Dad whilst hes driving 😫

I bought a Crelling harness for him but he wont wear it and then only way I can take him out on my own is in that bloody Maclaren Major....even then he makes it very difficult.

I wrote all about this to them but I will get a supportive statement from school x thank you!

Your ,welcome my son is also.a bugger for the school bus and has a harness that goes round his back in between his legs etc ! Also have a look under virtually unable to walk criteria as well ,my friends daughter ( similar needs ) got HRM under virtually unable to
walk as her behaviour is so extreme out and about.

Thank you, will do x

I just saw this on twitter and thought it might help contact.org.uk/news-and-blogs/does-your-child-have-learning-disabilities-or-an-autism-spectrum-condition/

Ooooh thanks for that! Perfick timing!! X