Worried about applying for DLA

[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.

 

[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!

 

[fairywings]

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. 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

 

[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.

 

[Midnight_Fairy]

Ours took 23 weeks and needed numerous letters!

 

[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........

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.

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

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?

 

[Caezzybe]

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"

 

[Midnight_Fairy]

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........

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.

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

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?

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!

 

[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.