Dd was awarded DLA today, higher rate

[SloeBerri]

Dd was on middle rate care from 3, today it was raised to the higher rate and mobility. It’ll go until she’s 11. I thought I’d be so pleased for the help, but instead I’ve been on the edge of tears all day since the letter. It’s a different ball game. A long award and higher rate basically says we are far away from normal. I filled the form in factually and straightforward about needs, and it feels crap to be unusually open about needs (I’m always downplaying I guess) and have a stranger equate it to high needs disability.

Has anyone else felt like this? I thought I’d feel a bit of victory against the system/ fighting for her entitlement and I just feel really low. I was expecting mrc, though I can see the criteria for hrc is met.

Ah I understand, take a squeeze people who don't have the experience just see it as free money with a stop moaning attitude but it is in reality a hoof in the guts to actually need it just for the doors it opens in order to support the bairn.

Do you have enough support IRL, it can be a lonely place when you have a child with a disability?

I understand, DS was awarded higher rate DLA. It was a weird feeling when it was awarded - conflicting emotions. The form took weeks to get right.

Yes I think every victory like this is always tinged with sadness that it’s needed at all.

It’s a strange combination of emotions

Thank you, we’re quite blessed with friends and family. Whilst easier, it aids denial! No one questions a 6 yr old in a buggy, husband died a good night share etc. Quite easy to just delay growing up iyswim? Just like you’re in a longer toddler stage

Switched device/ name change. Oops

It's an emotional hit that you're taking on her behalf, for her benefit. It's still an emotional hit, seeing her needs catagorised like this in black and white. So be kind to yourself and let yourself feel the emotions that come with it.

Firstly congratulation, and secondly I know exactly how you feel, when my ds was transferring to pip when he turned 16 he was awarded high rate in both categories for the next 10 years and I remember feeling elated because you read so many stories about people losing their dla that you never really know until the letter falls on the mat.

I also remember once it had sunk in I felt really tearful because its like he must be really bad to get awarded higher rate for both when he originally got middle rate dla and made me feel that maybe they viewed my ds as unlikely to be able to achieve anything in life independently, but he can and is achieving but just needs alot more help and support than others.

I think this is a normal reaction. A very close friend spent years battling for her sons special needs to be recognised. She was so strong and brave, but when she eventually won and everything he needed was put in place she had a bit of a breakdown - I think the reality that this was a lifelong condition that her son and her would always have to deal with finally hit home.

Another friend experienced it slightly differently when she eventually won her struggle to have a variety of apparently disparate symptoms diagnosed as a chronic, degenerative condition. Financially it was worth it as it has enabled her to access support that wasn’t previously available but after the euphoria of success wore off it took her a long time to accept that she was now officially ‘disabled’.

Thank you. I know this is logical. It it’s still surprised me what a slap it was

Having a 🍷 now

I think that's a completely normal reaction; I felt the same. It makes it all 'real' somehow.

It's the worst thing ever - first filling in the form, acknowledging the fact that your DC isn't typical. And then they agree with you, it's one thing for friends and family to know but an official dept.? That really throws you 😿
Sending 🍷 and 💐 and understanding xx

Filling in that form is horrendous emotionally. I understand how you feel.
My ds finally got an autism diagnosis but having got dla for his younger sister I find myself putting off filling in the form purely for how horrible it is.

I know what you mean. I was awarded higher rate mobility for PIP (nothing for care) and it was weird to think that someone else saw what I saw if you see what I mean.

I found doing my PIP form the same. I was awarded low rate mobility DLA age 12, did PIP age 27 and got standard daily living and enhanced mobility.

It brought it home that I am disabled, no matter how independent I am. I’ll always need help with some stuff.

I know what everyone here means

I found filling in the DLA form for DS to be a really emotional experience simply from having to categorise all of the additional care he needs compared to a typical child of the same age. It really made me examine all of the extra things I do for him or for his benefit whereas on a day-to-day basis I don't often realise quite how much scaffolding I do because you don't, do you, when you're living it? It's just your day to day routine but then when you have to take that step back and say "I do this, this, and this because if don't then that, that, and that consequence will happen" you realise exactly how much extra care is involved.

Ds1 is deaf so not entitled but every time we have a meeting, gain funding for school adaption and lately a place in a specialist unit - feels like a big kick. I have even cried once - never felt so embarrassed. So big hug from me if that’s ok.

Totally relate.
I have claimed disability benefits since I was 18. I get Enhanced Care and Standard Mobility. I know how ill I am but, there is still this tinge of sadness to see it acknowledged.

I understand where you're coming from. It makes it more real. My moment recently is not DC or money related but rather being introduced to DH's Macmillan neuro support nurse. Sent me into a spiral for days.

Thanks everyone.

I think sometimes I think we’re lucky, sometimes it hurts we haven’t ever had the battle bit. A lot seems to be on fighting for children, she was diagnosed with motor problems at 13 months first appt, Asd aged 3 first appt, epilepsy was straightforward.
Obviously it’s a crazy way of thinking, but sometimes I want the doubt or someone to question it. I got upset recently when ‘learning difficultly ’ was casually added to a letter, no heads up. The letters are stark at times, DLA has been straight through.

I have huge sympathy for anyone fighting for needs to be recognised. I can’t imagine how had that must be- but in a mad way a bit of me does t want her needs so readily seen too. Bit of a ramble

I get it too. At one stage my two dc were both on higher rate and I found it hard to accept the term disabled.

DP is on the highest mobility rate and when he was assessed the assessor said to him that he was going to recommend he shouldn’t be seen again for as long as possible because DP is never going to get any better. DP was very down about it all, especially that comment, which no doubt was well meaning but affected DP badly.

Gosh yes, @SloeBerri
DH was awarded higher rate for care and mobility. PIP assessor warned us how emotional it would be. At the time I was all psyched up, fighting for his needs, but it hit us like a ton of bricks afterwards as the realisation dawned that his needs are really high.
You go through a period of grief, but that does ease, and life goes on.
All the best to you and Dd and thoughts with all other posters too

Can I ask how long it took to be awarded DLA? I sent my DS form off 7th December. Xxx

13th Oct received, 4th jan awarded

Yes, I totally understand how you're feeling.

When DD was upped from lower rate to middle I thought I'd feel relief. Infact I felt nothing but heartache