Dla refused autistic 12 year old girl!

[Nikki1111]

Hi
My 12 year old daughter has been refused dla, I completed the mandatory reconsideration and this has come back as refused too. Do I take it to a tribunal? I'm sure after doing some research she should be entitled to extra help but feel like I'm hitting a brick wall.
Long story she has always been different but as she has got older she is become harder to manage. I have to still wash her as she refuses to wash, if we go out and she has a meltdown she runs into the road screams starts becoming violent to me and it could just be down to the slightest change in her routine. After years of being fobbed off by doctors and school her high school agreed they think she should be assessed for autism, adhd and aspergous the senko teacher is now involved and she has been great but have said it can take up to 12 months for her to be assessed. They have completed a report to get her accessed and has come back to say she is mainly non verbal and very nervous at school, no eye contact and hates any type off attention as she has been so quiet at school Its not been picked up at school earlier. A typical school day I have to wake her up at 5am to give her time to get used to the fact its a school day I have to dress and wash her as she refuses on arriving at school it takes myself and at least 3 staff members to physically get her into school, they then put her in a sensory room and it could take about an hour for her to settle down. School have witnessed her being violent towards me on several occasions the mandatory reconsideration came back to say they dont feel a large part of the day is took up getting her into school. She refuses to eat or drink at school or go to the toilet at home she won't eat infront of anyone and she doesn't like to be around anyone she just wants to be in her room I have to remind her to go the toilet amd most of the time make her go the toilet.if I didn't do this she would not go causing her to wet herself they came back and said as school dont offer her any support with the toilet or eating (because she doesnt do it) it suggest she doesnt need that help at home. If we are outside she has to be near me so I can grab her as if she has a meltdown she will just run she recently nearly fell into a canal after having a meltdown as there was too many people around. This was explained and they have said its not uncommon for a 12 year old to still want their parents close by. She has started her periods and refuses to wear sanitary towels so during this time I have to shower her at least 3 to 4 times each time casuing her to have a meltdown. I have had the police been called as her meltdown over her refusing to wear pyjamas lasted over 9 hours the police came out as it was 3.30 in the morning at this point and arrested her for assaulting me after sending all police reports they came back and said they dont feel there is any need for extra care at night as its not disturbing the household I dont know how much more I can give them i would love them to spend a few hours with her am I wasting my time just carry on trying to cope with her? Has anyone been awarded without a diagnosis?

All the children I support have had their DLA applications turned down this year, maybe they’re trying to sneakily save some money. You should definitely appeal.

I went to appeal for PIP about 4 years ago and a few weeks before the tribunal, I received a letter to say they'd reconsidered and awarded the highest rate for 10 years

I'd fill in the tribunal paperwork, you've only got something to gain

Take it to tribunal, technically you don't need a diagnosis as it should be given based on the extra support she needs. Ds was awarded it while we were waiting for his autism diagnosis (this was about 5 years ago though)

Yes appeal. Did your dd's school give a letter of support? Schools often dumb down the child's difficulties with positive vibes and that often causes problems.

There is a organisation called fightback4justice they are apparently very good at challenging decisions. You can google them and they have a Facebook page. Do appeal though. And gather as much evidence as you can. You can request your child's full medical record from the GP. Also ask for letters from any services she accesses. Good luck

My ds has ASD and we’ve been claiming DLA since he was 9. He’s almost 18.

He was awarded DLA first time but when he was 16 and it changed to PIP it was disallowed. I did a MR and still unsuccessful so I lodged an appeal. 6 months later, completely out of the blue we received a letter saying that they had changed their mind and awarded PIP for 5 years.

Please please appeal. The percentage that win is really high.

Also I helped a friend of mine successfully claim DLA for her son without a diagnosis and my neice received DLA without a diagnosis.
It isn’t about the diagnosis it’s about how their illness or condition affect them.

Good luck!

Dla for children is awarded against criteria based on what a child of that age should reasonably be able to do, not on diagnosis and they do not fit those with autism well unfortunately, because there's no category for how difficult they are! I've been to tribunal twice and won, but get all your paperwork ready to make your case. What specifically does she need help with eg you mention food, but what else? The reason we got it is because my dd also has incontinence and seizures, this means she needs supervision bathing for instance. Look at the form, they should have sent you a copy of where you did and didn't score points.

Definately take it to appeal. Speak to local citizens advice, they will able to advise as to whether they can help you prepare an appeal or at least signpost you to an organisation that can. They will also be able to give you an idea of whether they think a tribunal would be successful.Get together any supporting letters, evidence etc from professionals etc. The tribunal will then by heard by a panel of up to 4 professionals & this will give you the chase to speak your case. Its not as scary as people think it will be!There are delays with tribunal's with covid & your case may take anything to a year to be heard but you've nothing to lose.

Pardon....the chance!

Have you looked at the guidance on the cerebra website? It's really helpful.

Fwiw I my child has had DLA since he was 7 or 8 but only got a diagnosis at 11.

They do this all the time, the bastards.
You keep appealling all the way up.
Give many, many examples of her behaviours and send as many reports as you can.

I swear they keep saying no hoping people will give up. Sadly, many do

The other VERY important thing is record the assessments.
You have to inform them in advance that you will be doing it and provide them with a copy - I suggest buying two digital dictaphones, setting them both to record and giving them one at the end of the assessment. They don't tend to make shit up if they know you can prove what you said.

It goes off care needs not diagnosis as obviously Autism is a huge spectrum ,you need to think about what you have to do for your daughter above and beyond what you would not have to do for children without autism of the same age ,there are various Facebook groups for claiming DLA you may find useful.

Definitely go to appeal. Get as much evidence as you can. Keep copies of everything and send everything via registered post.

Period pants might be helpful for the period issue

I’ve been getting DLA for my twins with ASD since they were 2 - middle rate care initially and now higher rate care.

It’s all about how you complete the form, and the evidence you provide. I found the guide from the charity Cerebra really helpful.

You need someone (the professionals) to help fill out the form/appeal. E.g Parents Advice Centre, NAS even SCOPE etc. They do these on a regular basis and know what to say. The DWP likes to hear key phrases and words, and seem to automatically reject applications if those words are absent.

What you have written so beautifully shows your child is definitely entitled to DLA/PIP. And add it as your additional supporting statement.
Don't let them put you off, you'll/she'll will need it later, and is clearly entitled.

Please do take it to tribunal, most people who qualify for DLA go onto win tribunals

@Nikki1111 I knew a teenager like your daughter who refused all sanitary stuff and just bled over everything. Thinx period pants have been a complete game changer to her and her family

Keep going - they’re counting on you giving up.

WRT periods though, would your DD try period pants? ModiBodi RED (their range for [tweens &] teens) have a 30 day money-back guarantee for new customers so if they’re not right for your DD then you’ve not wasted any money trying them.

Thank you everyone for all your advice its made me more determined to fight for what she is entitled to. She has always been such hard work but I've always just thought that's just our tia and have always just got on with doing everything for her and just dealt with it but the more I read about the condition the more I do kick myself for not pushing the doctors sooner, and not realising it wasnt just how she is. I've just ordered some period knickers they do look fab although at the minute she is going through a phase of refusing to dress and just having this one same blanket wrapped around her. Its all pretty New to me and I'm trying to look at things differently to try and help her. The main problem i have with her now she has taken covid as if she leaves the house shes going to die so she won't leave the house and just wants to sit alone in her bedroom. I have bought her lava lamps for her room and this seems to be helping a little. is there anything else anyone would suggest to try and stop her from distancing herself away. Thanks

OP, you might want to report your post to MNHQ as your DD’s [nick]name is in there.

Could you use social stories with her to help with getting her out of the house & understanding the actual level of risk COVID presents to her & what she needs to do to stay safe? Are you in a position to be able to invest in some new clothes for her if she’s desperately struggling with sensory stuff? Not loads of stuff, even if she’s one on & one in the wash of soft leggings & cotton top or whatever? I don’t know if it would be worth getting an appointment with your GP in case they can help you access resources to help combat the anxiety she’s developing.

The sunflower lanyard is pretty widely recognised now so if your DD doesn’t already have one it’s probably worth getting one, especially if she’s not able (as I’m guessing’s probably the case) to wear a facemask.

The National Autistic Society have lots of resources; and there are lots of MH resources available now - maybe check out Young Minds just to start with? The NHS have drawn together lots of resources as so many children & young people have - unsurprisingly - had issues [worsen] because of the pandemic.

Just to give you hope I knew a child around the same age who refused clothes and just had a blanket. She’s now into fashion, hair and make up. A complete 360 after intensive help