# Worried about applying for DLA



## Caezzybe

What the title says really! Logan has Down Syndrome and is 1 next week, but I've not applied for Disability Living Allowance. I've had a look on the government website but was scared off by the form and by reports of people spending hours filling it in and getting nothing (or the lower rate), then having to go to appeal. I've been told it's the most depressing form I will ever fill in and that I have to describe the worst day possible in every question.

It also worries me that Logan's development seems to change on a weekly basis at the moment and that whatever I put on the form will end up being wrong by the time they get it???

I know Logan is entitled to that money really (the Down's Syndrome Association says that Down Syndrome should qualify automatically for the medium rate) but I am too much of a wuss to apply.

Any advice? Or are you in the same situation too??


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## fairywings

Aw what a cutie!

I can't help on the extensive form filling in as I had the DS1500 filled by his neuro consultant when he was about to leave hospital, the one you fill in for terminal illness and only have to fill in two pages of the form luckily.

But it does not matter that circumstances change from day to day, you should fill it in like advised, by worst day scenario. I know it isn't pleasant, but they need to know what you will be doing on a worst day with him.

You can get help filing it in. So if it is a bit intimidating I would do that and get what is rightfully yours. Also if you get tax credits tell them about your son as you will also likely get a raise there too.

Good luck with filling it in. :hugs:


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## mommy43

its a a drawn out form n u will repeat yourself over n over 

do u have friends with lo similar age? i know its not nice but maybe you could compare the things u do for your lo to what they are doing for theirs 

maybe write down eactly what u do each day for a few days so u see in black & white n base your form on worst case in every section

is logan your oldest? i know when i did mine for my oldest (not for downs though) i think it makes it that bit harder as it was 'normal' to me n you dont realise u are doing that bit more than others with a child the same age, hope that makes sense:)

he's gorgeous btw n definatly do it, him having downs wont change so they cant pull u up on that hun :hugs:


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## Lottie86

I won't lie it is a very long and depressing form. I found filling the form in a bit at a time was easier emotionally than filling the entire form in in one go. 

Children are awarded DLA based on their care needs not the diagnosis (ie I know 2 toddlers with Spina Bifida and as their care needs are different 1 gets high rate care and the other only gets low rate care) so don't worry if you know of other children with the same diagnosis who get higher or lower rates than Logan. 

Also an important thing to note is that you are *not* supposed to fill it in for a worst case day. You are supposed to fill it in for a typical day and then just write a bit about how things can vary on a worse day. 

Don't worry about if his development changes by the time they get the form as they ask in the form for details of his doctors and once they get it they will most likely write to them for more info on Logan and his condition. 

P.S: I can't believe how grown up Logan looks now!! He's gorgeous :cloud9:


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## Midnight_Fairy

Hiya, my God daughter has Downs Syndrome. They had a but of a tough time applying but it is always worth it. It also means you can get a yellow card too as most places will allow a carer in free or for discounted rate.

Its a bit depressing but just take your time and use extra paper if you need to explain xx


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## Marleysgirl

I completed A's DLA application online, I don't know if that might help you? I seem to remember that you could save it & come back to it later, you didn't have to complete in one sitting.

I actually didn't find it that hard to complete, but then I'd been completed JSA forms, HB forms, MA forms - to me it was just another typical government form :haha:


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## Tegans Mama

The form is very stressful and depressing. I fill it in a tiny bit at a time - one or two questions - because it really does affect my mental health. The stuff I don't think about on a day to day basis, all written down for me to see, scares the living daylights out of me.

I would say if you're struggling perhaps go to CAB or ask contact a family to help :hugs: 

Lottie is right about the care level varying - my LO has Spina Bifida and she gets higher rate care and mobility (mobility as of yesterday - she just turned three) since she is paraplegic and needs around the clock care now. However I know of people with children with the same condition who get no mobility component since they walk, and low/medium rate care. 

Good luck with the form! It really does get you places when you get DLA I think, free entry to attractions for a carer, discounts etc


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## Midnight_Fairy

Same as lea, I did a few pages a day. Also contact any local disability charity's or groups as many will help you fill in the form. Its hard seeing it written down, I got a bit depressed but its done now. We get higher care and it did take the stress of me having to work aswell and all his extra needs xx


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## helenb

i applied for my son alex a few years ago and although i was worried about it everything was fine. it is a long form but once you start to receive the benefit it is really beneficial. alex was awarded higher rate care and mobility (although you are not entitled to mobility until the child hits 3) and it has improved our life so much. we are able to provide a life for him that i would not be able to do otherwise. also if you can not work as you care for you baby (even if your husband/partner does work) and you receive middle rate or higher, you can also claim carers allowance. every extra bit of money helps to make your childs life better. use the days you have the worse case scenario - thats what they want to know about and include everything, even if you think you don't need to. good luck xxx


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## JASMAK

We filled out our forms (Makena has ASD and we get the dissability credit here in Canada for her). The forms here are pretty depressing. I heard on one website that you have to make is sound 'bad enough' or don't bother. The doctor fills it out, which kind of worried me as we mostly saw the pediatrician, and not the family doctor and so I was worried the family doctor didn't know her well enough, or wouldn't know how to do it properly. It took me four years to finally fill it out. The good thing was, we got back-dated and got a cheque for 9K and then had our taxes backdated as well and got an additional 10K from that. A family member made a sick comment about how they wish their child had ASD so they could get that money, and I freaked on them...and told them I would gladly give up all the money in the world to have MAkena not have ASD. Anyways, good luck with your forms...nice to have them done and over with. x


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## Lottie86

helenb said:


> use the days you have the worse case scenario - thats what they want to know about

This is not the case. You are **not** supposed to fill in the form based on your child's worst day. You are supposed to fill in in based on their typical day and then write about how things differ on a bad day.


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## Midnight_Fairy

Lottie86 said:


> helenb said:
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> use the days you have the worse case scenario - thats what they want to know about
> 
> This is not the case. You are **not** supposed to fill in the form based on your child's worst day. You are supposed to fill in in based on their typical day and then write about how things differ on a bad day.Click to expand...

Yup I filled in the form in a diary format as he is so unpredictable, I literally wrote a diary for 2 weeks and sent that off with it! x


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## Tegans Mama

Midnight_Fairy said:


> Lottie86 said:
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> helenb said:
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> use the days you have the worse case scenario - thats what they want to know about
> 
> This is not the case. You are **not** supposed to fill in the form based on your child's worst day. You are supposed to fill in in based on their typical day and then write about how things differ on a bad day.Click to expand...
> 
> Yup I filled in the form in a diary format as he is so unpredictable, I literally wrote a diary for 2 weeks and sent that off with it! xClick to expand...

Lottie's comment is exactly correct, and the DWP are cracking down hard on families who fill in the forms as a worse case scenario. It used to be the given advice but changed quite frequently.


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## helenb

Tegans Mama said:


> Midnight_Fairy said:
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> Lottie86 said:
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> helenb said:
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> use the days you have the worse case scenario - thats what they want to know about
> 
> This is not the case. You are **not** supposed to fill in the form based on your child's worst day. You are supposed to fill in in based on their typical day and then write about how things differ on a bad day.Click to expand...
> 
> Yup I filled in the form in a diary format as he is so unpredictable, I literally wrote a diary for 2 weeks and sent that off with it! xClick to expand...
> 
> Lottie's comment is exactly correct, and the DWP are cracking down hard on families who fill in the forms as a worse case scenario. It used to be the given advice but changed quite frequently.Click to expand...

that was the information i was given when i was told to apply by my sons special needs health visitor 10 years ago. 

sorry if my trying to help was me giving out incorrect information but i could only offer that particular advice as it was what was given to me.


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## Midnight_Fairy

I think its just because people writing a bad day which could typically only happen say once every 6mths etc so it wouldnt be very truthful. This is why I kept a diary so the difference between good and bad and how often was accurate x


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## helenb

ah, my son's worse case scenarios happen every few days you see and can last weeks before getting better. that may be why i was told to do that particular thing. 

i was only trying to help and to stress that applying and receiving DLA can give you the ability to make a childs life better and more comfortable. without it, i would not be able to give my son the things he needs to live in less pain and more independantly.


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## fairywings

JASMAK Wow you are so lucky to get it backdated that much. We only get up to 12 weeks. An advisor when my son was in hospital also told me to fill it out as worst day, as if I had done it based on the rare good days Ryan had we would never have got high rate, which is what he was entitled to. I am so relieved his consultant did the DS1500! They may have changed the advice now but my sons worst day would not have fit on the additional bit. That was 2 years ago so may have changed now. I also gave advice based on that not knowing it had changed.

Sorry you got such an insensitive comment JASMAK. :(


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## Tegans Mama

Ten years is a long time :( and the rules change. Every day is more or less the same here - same 1-2 hourly checks round the clock, same 3 hourly catheter round the clock. She's not gonna wake up tomorrow and walk down the stairs tho believe me I wish she would. We are quite lucky in a sick sick way that her prognosis will never change, shell never get better and the dwp can question it until the sun comes up bit it still won't change a thing. 

To the op - I hope everything goes well and your son gets the level of care he deserves :)


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## Lottie86

I'm dreading having to fill the form in for Iona once she's been out if hospital for 6wks plus F's renewal will come through at some point in the next few months. Have a horrible feeling with Iona being such a young baby I'll have to fight the dwp for it :nope:


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## fairywings

Lottie86 said:


> I'm dreading having to fill the form in for Iona once she's been out if hospital for 6wks plus F's renewal will come through at some point in the next few months. Have a horrible feeling with Iona being such a young baby I'll have to fight the dwp for it :nope:

What is wrong with her if you don't mind me asking? I hope that it is not the case. It is the DLA for you though. When Ryan died I got my other benefits paid compassionately for 8 weeks, whereas with the DLA it stopped that day. they are just hard nuts, and since we could have claimed from birth and didn't, makes us mean we were short paid anyway, and it did not matter as he was in hospital, but . . . .

I digress, anyway hope you get it with out a fight. xx


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## Lottie86

She's got a rare chromosome trisomy which has caused various issues. She had 2 brain haemorrhages in her first few weeks and major lung issues, she's got low tone, stomach and bowel issues, growth problems, FTT, unsafe swallow so at risk of aspirating when she's sick, extreme reflux, she currently can't maintain her own body temp (although she won't be allowed home until temp sorted), she's fed via pump into her bowel with an NJ tube and also has an NG tube down the other nostril as 2 of her meds have to go into her stomach rather than down the NJ into her bowel. 
As she gets older developmental delays will become apparent and seizures also possible.


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## Midnight_Fairy

I found the DLA more stressful than the diagnosis! We are not up for review for good few years yet. (Thank god)

I found the forms incredibly stressful but I would be lost without it!


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## fairywings

Lottie86 said:


> She's got a rare chromosome trisomy which has caused various issues. She had 2 brain haemorrhages in her first few weeks and major lung issues, she's got low tone, stomach and bowel issues, growth problems, FTT, unsafe swallow so at risk of aspirating when she's sick, extreme reflux, she currently can't maintain her own body temp (although she won't be allowed home until temp sorted), she's fed via pump into her bowel with an NJ tube and also has an NG tube down the other nostril as 2 of her meds have to go into her stomach rather than down the NJ into her bowel.
> As she gets older developmental delays will become apparent and seizures also possible.

Thank you for explaining. Half of those problems Ryan also had with his condition. :hugs: so I can relate (the aspirating, body temp, reflux, developmental delays, stomach and bowel issues, Gastrostomey ect.) I am so sorry she has all that. Ryan had seizures from very young. So I know what your are going through, and there is NOW WAY you will be refused help! NO WAY. I can promise you that. xxx


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## Marleysgirl

I think we must have been VERY lucky with our DLA application, as we had no supplementary questions and were actually surprised to be awarded the medium rate care element rather than the lower rate. 

We applied when Andrew was diagnosed with his basic hearing disorder; we didn't mention his developmental delay as that wasn't really established at the time. We took some advice on sample phrasing from the RNID website, and wrote that he needs someone to watch him during daylight hours because we cannot shout a warning across the room when he is in danger. The only medical contact we listed was his hospital Paediatrician (as we didn't really know the Audiology team at that point).

I didn't find the form onerous to complete, perhaps this was because his disability wasn't emotional in any way, it's a factual hearing loss that will impact on his life. Perhaps by then I had also become immune to the DWP's various forms!!! 

I wonder how completing his 3yr renewal will go ... He definitely has different care needs now, with feeding issues (though nothing on the scale of Fin & Iona) and developmental delay.


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## Midnight_Fairy

Ours took 23 weeks and needed numerous letters!


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## Foogirl

Urgh, I still need to finish it. I'm doing it online and the biggest problem I have is in answering the questions about whether she needs more care than the average child. How the fekk would I know, I've never had an average child, I don't know if they are supposed to be able to dress themselves at 2 and a half, or how much help they need getting into and out of bed or with eating or........



mommy43 said:


> its a a drawn out form n u will repeat yourself over n over

Yes, I very much got the feeling they were trying to catch people out. Ask the same question a dozen times and see if you get the same answer. Cut and paste helps when filling it in online.



Lottie86 said:


> I'm dreading having to fill the form in for Iona once she's been out if hospital for 6wks plus F's renewal will come through at some point in the next few months. Have a horrible feeling with Iona being such a young baby I'll have to fight the dwp for it :nope:

Will you not be able to use the fact she has the same problem as Findlay to point out she is entitled to some form of additional care? I know what has been said about two children with the same thing needing different levels of care, but surely it counts for something at least?


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## Caezzybe

Foogirl said:


> Urgh, I still need to finish it. I'm doing it online and the biggest problem I have is in answering the questions about whether she needs more care than the average child. How the fekk would I know, I've never had an average child, I don't know if they are supposed to be able to dress themselves at 2 and a half, or how much help they need getting into and out of bed or with eating or........

I know exactly what you mean! Having never known anything other than having a child with Down Syndrome, I don't exactly know what "average" is supposed to mean! :( To me, having a child who doesn't sit confidently, doesn't crawl properly, doesn't stand or walk at one year old is "normal"


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## Midnight_Fairy

Foogirl said:


> Urgh, I still need to finish it. I'm doing it online and the biggest problem I have is in answering the questions about whether she needs more care than the average child. How the fekk would I know, I've never had an average child, I don't know if they are supposed to be able to dress themselves at 2 and a half, or how much help they need getting into and out of bed or with eating or........
> 
> 
> 
> mommy43 said:
> 
> 
> its a a drawn out form n u will repeat yourself over n over
> 
> *Yes, I very much got the feeling they were trying to catch people out. * Ask the same question a dozen times and see if you get the same answer. Cut and paste helps when filling it in online.
> 
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> Lottie86 said:
> 
> 
> I'm dreading having to fill the form in for Iona once she's been out if hospital for 6wks plus F's renewal will come through at some point in the next few months. Have a horrible feeling with Iona being such a young baby I'll have to fight the dwp for it :nope:Click to expand...
> 
> Will you not be able to use the fact she has the same problem as Findlay to point out she is entitled to some form of additional care? I know what has been said about two children with the same thing needing different levels of care, but surely it counts for something at least?Click to expand...


They phoned me too! About 6 weeks after I applied, felt like I was in a test! I said to the woman, look not being rude but I am seriously sleep deprived, seriously stressed and I dont know what I said for that particular question but as you can hear in the background, I AM BUSY!


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## Foogirl

Sounds awful. Thing is, I know they have to check folk aren't at it, but surely the doctors who fill the form in should be trustworthy. If not, it is them they should be having a go at, not parents who have enough on their plates.


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