DLA forms belong in the fiery depths of hell

I feel your pain Mrs Magic. Last time I needed to fill these in for my son I felt like throwing the damm things out of the window. They're just SO personal and SO intrusive....... like you said, they have to be, but it doesn't make them any easier.

?

Good God - do they publish national statistics on this? Someone somewhere is probably being paid to compile facts such as 80% of people who need help wiping their bum need help 80% of the time.

It's crapola - sorry you have to go through this rigmarole.

I couldn't agree with you more Mrs Magic, and in fact I almost posted the same thing myself. I've had to reapply for Daniel (son with Fragile X) as his runs out on his 5th birthday, and have spent the last two evenings hunched over the computer, running down a most beloved son, downplaying all his fantastic achievements and dwelling on his problems. It's so dispiriting to be so negative. And it's so long.

I've no idea Laura but it so unbelievably personal. You have to become so negative and talk about your very worst days then assign a time limit and frequency of the particular action (toilet needs, getting out of bed, cutting up food etc) on each one. If you say you can do things some of the time, you haven't got a hope.

? Auris and Ginni.

Ginni, I've really struggled with this one as it's the first since being very depressed. I've had to say things I wouldn't really admit to anyone in real life. ? I don't want to say that I feel I'm a danger to myself 7 days a week. I guess it will be worth it if I can budge up to higher rate care. Good luck with your application!

I also agree. I had to reapply when my son turned 5. It's heartbreaking isn't it?

Mrs Magic - well done for finishing it ? If I had a round of applause icon I would give you it becasue they are awful and sooooooooo tedious.

I have just successfuly applied for DLA for my husband. We struggled to get the higher rates, even though we know he deserved them, because of what we were writing on the forms. We appealed last time and got the higher rates, and have just had it renenewed, with the award made indefinitely. No more crappy forms...

Remember that to qualify for higher rate care it is WHEN you need the help - you have to need help during the night at least twice during the night, 3-4 nights per week to get higher rate, otherwise the highest you can get is middle rate.

I joined this https://www.benefitsandwork.co.uk/ website, i think it cost about £18 but was worth every penny. My membership is still valid if you would like me to get the forms off it and e-mail them to you Mrs M??

?That must be hard to put down, especially to a faceless government body. I can't believe you don't get high rate care already. They're so arbitrary, it's really not fair. We know someone whose child got high rate care for eczema, yet we had to struggle and appeal right up to asking for a tribunal date before Dan was awarded it. We tried for mobility too, on the grounds that he has a severe disability of the brain and behavioural issues, yada yada, and is a danger to himself if allowed to walk outside unsupervised, but no dice. We're hoping for low rate mobility after he's 5, but who knows....

It's been my worst one to fill in too, as I've not been in a happy place recently.

Big hugs to us all, DLA forms are loathsome.

Ahh, thanks for that ? but I have already posted the form off (I had no idea you could do it online, bums! ?)

I had the help of a benefits advisor last time and I filled everything in a similar way this time, with more added due to my chronic depressive disorder. I got higher mobility and middle care last time but I have said that I need help twice at night, 7 days a week this time so who knows... (going on worst times as advised, I feel a bit of a fraud as I'm not like that all the time.)

I know lupus can get the lifetime DLA award but I think you need to have organ involvement, I'm not sure. I don't have that (which I've very glad of btw ?) so I think the chances of lifetime award for me is pretty slim.

? denise.

I am sorry so many of you are struggling with these forms too, when we took Dec for his medical (a new experience for us) the doctor actually started to read out a letter the consultant had wrote about Dec needing new lungs or he won't be here in 5 years, infront of Dec, he is 15 and not completely stupid. I was fuming and complained, it's like they see "clients" as just things on paper.

We were advised to write about his worst day and use that for our answers.

If they say you are entitled to DLA for life do they really mean that or will they randomly decide to reassess someone after a few years?

Oh, I hate those forms! I feel for you!

I filled my first one in on my own when I went to Uni, and I must have put something different to when my dad helped me as they wrote back saying they were 'very happy my condition had improved' and stopped paying for my Motability car! I got some help to appeal luckily and got awarded it for life.

Then, when I got back from America I had a similar problem. Before I went, I phoned then, told them I would be working abroud for 2 years and could I put the DLA on hold (as it had been awarded for life)-I phoned twice, just to check and they said that was fine. Of course when i got back, they knew nothing about me so I had to start from scratch! I went to an appeal again, and luckily was having a bad day on the day and now have it for life (again!)

Oh my goodness, how bloody awful. I hope they took your complaint seriously. I can't believe they even sent him for a medical! ?

I really have no idea! I'm guessing it's only awarded for life if you have a life long/life limiting condition which isn't likely to improve.

Eirwen, I'm glad you managed to get it sorted! ? I can't believe they sent a letter saying that! ?

I think they sent him because he goes to school and I think they thought they thought he was swinging it a bit.

It's hard when you can't always see what's wrong, it sounds awful but people don't seem to question anymore if we park in a disable spot, before we'd get so many looks, now they just stare at the oxygen?

It's bloody hard though isn't it, I sometime feel like we're begging.

I too hate them with a passion. My son is 4 and has autism. We applied twice, were turned down and then appealed. His paediatrician was disgusted we weren't getting it and helped us get middle rate for him. The second time I applied I wrote the worst case scenario for every question, but they still said he didn't need more care than a "normal" child. She wrote to them ang like magic, we got a letter shortly afterwards saying they'd changed their decision

Hate hate hate hate them.

I only qualify for the lower rate yet I still have to fill the whole flippin form in! I get help from the local citizens advice beauro (sp) they're a huge help.

Completely sympathise with you x

I forgot to say, if anyone needs help with the forms, it was DIAL who helped me. They were great.

https://www.dialuk.info/

You have my sympathy. The most soul-destroying form I've ever had to fill in. Why they can't take the word of the numerous bloody professionals we see about Lexi, I don't know. I think it would be better done by interview TBH. It's much easier to explain one to one, than to fit into an often inappropriate format that either doesn't apply to us, or doesn't fully demonstrate the problem.

They are awful - I work in the benefits sector and someone brought one of these into our office for help. shamefully we all struggled too!

I totally sympathise with the depression related filling in of the forms, I hated doing it and I was really down for ages after filling it in.

I had to fill one of these in earlier in the year, and it really does get you down ?

I think those forms are awful. I often get given them to fill a section in by the parents at school. Stupidly some of our children haven't got higher rate even though they have severe or profound and multiple learning difficulties.

It's horrible having to put all the negative things as you spend so much time focusing on the positive.

Hugs to all those who have to fill them in about themselves or a loved one. It's hard enough for me doing it about the children in my class.

So glad to hera you've finally finished it Madge.

It took me ages & ages to fill mind in, and like you I found it soul destroying and depressing. Even more so when I got awarded just the lower level of care ... but hey, every little helps

Firstly ? to all of you who have to fill in these vile depressing forms.

My son was diagnosed with autism when he was 4 but I didn't know anything about DLA until a year later. I have had to fill these forms out every 2 yrs, 1 year went from higher rate to NOTHING, appealed and was awarded higher rate again (how the H£ll can that happen??)

One year in the 'extra revelant information' page I added 'Does your child make you laugh/smile? How many times a day? How many days a week? We know this maybe hard to answer, but please try...etc.blah..'

It is so hard when you are trying to focus on all the positives and all of a sudden you have to describe your child/yourself at their worst ☹️

Last year my son was awarded higher rate DLA until he turns 16 (he turns 12 in a month) then he will have to fill in the forms himself...he does not know that he has autism, although we talk about other peoples feelings/doing your best/being kind etc. With all the hormonal/school changes he is going through now I'm really quite freaked out about the talk we will have to have soon ?

What we've done is downloaded the form (a PDF you can type into), filled it in and saved it. I've combed through his last form and updated it. I'm going to go back and put in the diagnosis part that it's a lifelong condition in the hopes that he gets his award until he's 16 this time. My friend's son has been given his until 16, and he's only a couple of months older than Daniel.

The annoying thing is that we've only just been awarded high rate care after a protracted wrangle with the DWP, then a month later, we hae to reapply. Some of the supporting evidence I got can't be redone as the person in question has now retired and hasn't been replaced, so I hope they'll accept her report as she only did it at Easter.

That is a truly bizarre question. Have these forms been designed by a sadist or what?

? for everyone filling in these ridiculous questions.

In a similar vein, they wanted to know how often my severely language delayed son needed help speaking to people.

Hmmmm, I don't know, have a guess. He's two to three years behind and he's five. Would it be All The Bloody Time?

I actually worked it out - every 5 minutes on average, so 150 times a day, 7 days a week. For two minutes a time.

Blimey but doesn't it make you realise how utterly crap your life is?

Oh JK, nothing like seeing something written down on paper... ?

I can sort of understand where they are coming from on this question, as in it could be appropriate for an adult who is fine on day to day things and needs help for eg financial matters (and cnutish form filling exercises) but it's utterly inappropriate for Lexi.

The system seems ridiculous to me and I suspect the level of help awarded is to do with how you phrase things rather than actual help required. I mean,writing down 150 times a day looks bl00dy awful, if you just said continuously, it wouldn't mean much....

They sound nightmareish and a case of how you describe it affecting the award. My boy has a temporary condition that some people have got DLA for, those that get it are often no worse affected than those that don't-it all depends how they filled the form in.

You have my sympathies. I have just spent ages going through the forms for my son, seems like I only applied a few months ago and now I have to fill the whole form in again to re-apply. It is so depressing! If you feel you are missing yours now it has been sent you are more than welcome to fill in this one ?