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DLA for 2yrs old refused (heart condition) + My Benefits and borrowing - help with both please


peakson
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Hi all

 

I have applied for DLA for my daughter who is aged 2 years old.

 

She has a heart defect called Atrial Septal Defect and requires open heart surgery,  they said this is not available till she is around 3 years old.

 

It is a quite common thing for a child to have, but the difference is my daughters is very large compared to the average child who has this condition.

 

Because of her heart condition it has affected her appetite,  one of her symptoms is she is underweight and due to see a diet specialist soon,

 

at this current time she is being investigated for her bones not developing correctly, she also wakes up at night in a lot of pain screaming and curling up into a ball, she does not have much energy and she cannot play for as long as my other children without being tired and breathless on occasions.

 

Since she months old she was required to visit a heart specialist every 6 months and this had now been change to every 3 months due to everything I have listed above, last time we went her heart rate was 260bpm and she had to have a ecg at home for 24 hours that came back good.

 

Here are some of the rejections from dwp

 

Higher rate mobility because she's under 3

Lower rate mobility because she's under 5

 

Daily living rate rejected due to her sleep issue is normal for a child her age.

 

In her last medical letter it said she is fit and well and her ecg is normal 

 

her claim was rejected,

I will update this once I get the response from dwp as this was from a phonecall with them and I could not note everything down they said but its almost what I have said about due to rejection.

 

They really have not put much into the consideration and you can really tell they are not medically trained,

they do not realise or consider my daughter could go into cardiac arrest or have a stroke at any time.

 

Could anyone advise me is this worth doing a appeal and where do I start with all of this? 

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Hi,

 

There is a section where it asks for a specialist / doctor to fill out, I had not asked anyone to fill that part out because I sent a lot of medical letters with the application from the peadiatric specialist, but seems this could be part of it.

 

I called back dwp today and the reason it was rejected is because in one of the my daughters follow up letters it says, 

 

She is fit and healthy, full of energy and has not had any chest infections.

 

The above excuse for rejection terrible.

 

I have contacted my local cab who is helping me defend refusal and I spoke with my daughters heart specialist who was quite shocked it had been refused and is now going to complete the original part for me to send into them.

 

So hopefully everything works out now.

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  • 4 weeks later...

Update on this.

 

I have another letter from my daughters Paediatric cardiology team, they have filled out the part in the allocation form, they have also made a letter explaining her condition and how it effects her, I have a appointment with my local CAB tomorrow, so hopefully my next message is something positive,

 

Thank you all on here your all great!

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Hi all

 

CAB has filled in the relevant documents and they have been sent off recorded.

 

I wanted to ask in the mean time, a friend of mine mentioned a GoFundMe page for my daughter in the hope family and friends could help us financially.

 

Myself and partner are of different benefits such as employment and support, personal independence payment, universal credit and carers allowance, if we did set up such page, what are the consequences, do we risk monies being altered or stopped?

 

Thank you

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Oh wow that was lucky I signed up but did not fill any further information!

 

Can I just ask, dose this also count if we borrow money or money is sent direct to our bank as a gift.

 

The reason I ask this is because my step mum randomly sends us money to help with bills

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Hi all, I have attached one letter that has come in the post late, I have already sent off a mandatory reconsider application with other medical evidence.

 

In the original application that was rejected, they are basically saying my 2 year old is fit and well and her sleep pattern is normal for a 2 year old,

 

To the point, she sleeps 9 hours straight at night and then she requires 2 naps in the day that can last upto 4 hours without being able to awake her, Evan nursery has trid to awake her and it's just impossible!

 

The letter seems positive and could help her application, the only problem I can see is that the Dr has not writing how she sleeps correctly and i dont want to submit something that could cause rejection by misstake, just like when the dr said my daughter was fit and well in one of her letters, i spoke with that dr and she said annabelle is fit and well for her condition. Meaning there is know need to take immediate action such as sugery etc.

 

also i would be grateful if someone could respond to my previous message on here.

 

Thank youAll PDF Maker 20230122 01.44.34.pdfAll PDF Maker 20230122 01.44.34.pdf

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Hi

 

I made a brief comment in a previous post and I didn't get a response about borrowing money from family memebers, I enquired about a go fund me page but was advised this would be classed as income,

 

over the previous 2 years I have been borrowing from family members and quite a lot of money as I hit a financial brick wall after being told I'm unfit for work due to health issues,

 

does borrowing count as income, have I done anything wrong? And what should I do? 

 

Sorry my anxiety has been all over the place and I have had sleepless nights worrying that I have done something to jeopardise mine and my childrens income (Benefits)

 

Sorry if it's a repost and nobody can advise, it's just I've been waiting days for a response constantly checking my emails and the original post hoping for answers

 

Thank you all

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  • dx100uk changed the title to DLA for 2yrs old refused (heart condition) + Benefits and borrowing - help with both please

Hi,

 

Thank you both for replying,

 

We currently get, UC, ESA, PIP, CA, CB, I'm on old Style ESA too.

 

I couldn't say we have ever had a maximum of £2000 in our account let alone £6000 our money comes in and it's gone within a couple of days!

 

So December is a good example as we had to borrow a extreme amount not only it being December, our car broke down and cost us fees to us ending up scraping it and buying a second hand one 

 

From 1st December to 31st December our overall balance was £4500 including benefit payments.

 

 

Our highest balance on any given day was December 14th our balance was £570 money was sent over a couple of occasions first we borrowed money to attempt to fix our car, then our daughters nursery fees went out so we had to borrow more and then we had to get another car, so we never had £4500 in our account in one day it was over a series of days or weeks.

 

Thank you all

 

 

 

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Thank you, and yes your right, for my medical needs and annabelles it packs a punch in alot of our finances, especially now our daughter requires so many meals a day it all adds up, this is why we are so stressed about our dla application, 

 

I understand we are paying for nursery fee's but we will soon be able to get help with them fees that is also costing us around £400 per month, my medical condition varies day by day and with our daughter we feel she will gain more from life being at nursery and with her condition we want her to enjoy life as much as possible she was two last year but not entitled until April this year. This will also be a big relief to our finances, so our financial mess is pretty much our own doing.

 

Thank you for the link I have not yet had any advice on our finances, your website is the only advice I've had, except CAB completed our dla forms.

 

 

Thank you

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Thank you everyone for being helpful, I am in the process of sorting this money mess 

 

Still not heard back from dla, received a text yesterday saying thanks for the application and I should hear back within 4 weeks

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  • 3 weeks later...

Hi guys,

 

Thank you for all your support and some of my questions that may of seemed silly!

 

I am happy to say my daughter has been accepted for DLA middle rate,

however I was really shocked that she has been awarded it for 5 years,

 

I think my daughter will be around 7 when it will be due an assessment,

 

I'm really happy with the outcome and it is enough to help my daughter with her medical issues,

 

I am honestly grateful to everyone, especially the CAB and all the advisors on this group, the CAB also managed to arrange £700 in tesco vouchers to help us until the decision came back from dwp, that has also helped my family out alot and reduced our bills that hadn't been paid for a while and all in all everything should be back on track.

 

Thanks again guys! You are the best!

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  • 3 weeks later...

Hi all,

 

I had my pip review come up in December and I'm still waiting for my desision to come back, my claim expired last September but because they are so behind mine was extended until September this year.

 

Since my last claim review that I had to yet again attend another face to face assessment I have had a couple of diagnosis to add to my health list, these conditions are Empyema(serious lung infection in the plural space) and Obstructive sleep apnoea and Dyspnoea (breathlessness) I also have long covid.

 

I am on enhanced rate daily living and low rate mobility,

I have trouble breathing and I cannot walk far at all,

 

I was advised to put "NO CHANGE" in all my application boxes and for mobility I was told to make a change to my claim and put "can stand and then move unaided more than 20 but no more than 50 meters" which is pretty much true

 

I can't even get around tesco without stopping constantly for breaks,

 

I just wanted to keep my claim the same as previous years as you know pip is a complete pain, 

 

I want to know -

how does this usually get resolved?

 

will my money be stopped before September without notice or before any assessment etc,

I'm worrying every month that I'm going to look in my bank for money I am in need of and it not be there? 

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  • dx100uk changed the title to DLA for 2yrs old refused (heart condition) + My Benefits and borrowing - help with both please

Hi all,

 

Thank you for the fast response, 

 

This is why I just put no change every year I was advised to do that in 2016 and it works, I usually have an assessment every couple of years, but I had Charity MIND help me do the paperwork this year as I have been referred by adult mental health team, so now I'm not sure what I will have to do, thank you for letting me no about the money not stopping before the assessment as I can relax abit now, I havnt been given an assessment date as of yet, so DX could be right it may get extended for another year, I don't think I will get any better by then I seem to get worse each year 

 

 

Sorry forgot to mention both dla and uc backdated, I put a note in the journal, thank you

Edited by peakson
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  • 2 months later...

Back on here again guys, sorry to trouble you, its problem after problem here 😅 

 

So now I'm living on my own with disabilities and 2 children 1 with a heart condition as discussed. 

 

We were unable to find advice, and could not get on here in time, cab wouldn't answer the phone.

 

My partner is still around but has had to find temporary accommodation via our local council, reason for this is she's done something silly at home and on her bail conditions until august she's not allowed to return home, the council told us we could not keep our joint claim as she would need to claim housing benefits to support her temporary accommodation.

 

Now she has a single universal credit account and I have my own uc account with two children, I've added our disability, rent etc so I think I have set it up properly.

 

They said I will still receive money on the 7th so hopefully that will go through OK, 

 

My partner gets carers allowance, will this need to stop if she's away temporary? I.E three months plus.

 

Secondly if that is the case. It must stop! Would I be able to get SDP back? I wasn't sure as the children will live with me..

 

Also to update my daughter has her heart surgery on the 8th of June :(

 

Thank you

 

Sorry would let me edit again.

 

Just forgot to mention, wanted to add SDP as I won't manage and would have to hire a carer, I also need to find child care for my one year old as I won't manage full time on my own.

 

Thank you

Edited by peakson
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So I think I've found out what to do, I could be wrong that's why I need you guys!

 

So cancel my partners carers allowance for myself.

Then open a carers allowance claim for my daughter(middle rate dla) and I will be named carer? I think SDP should be out of question as this will probably be temporary.

 

Question is, am I able to be my daughters carer? I claim esa (old style) and pip.

 

I know it would be less money, but it's something and probably less complicated to claim? 

 

Just to clarify we claim

Esa and pip (myself)

Child benefit(would this need to change to my name?)

Uc

Child element

Housing

Disabled child

Disabled adult

DLA(CHILD) middle rate.

 

 

 

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