7 year old tube fed child DLA renewal refused :(

DianneB

Bumpmakesfour don't give up!! my daughter has cystic fibrosis and is diabetic, we had her reduced to lower rate from middle, I appealed once and had it refused, appealed again expecting no change and got it reinstated without going to court. I am still quite shocked! I think they are just trying to save money and hope people will give up.

SuziQ

when it's bloomin obvious my daughter needs lots of care

Can you imagine how much it would cost, to hire a team of nurses round the clock to look after your daughter? That was what was said to me, when I declined to apply for DLA for my son after he was first awarded for a year. We were both earning decent salaries (I was working as a Health Visitor and than at Nhsdirect ) and could afford the therapy we had to buy privately, as the local authority had literally no speech therapists or physios. Once our marriage broke up (partly due to the strain, but other issues too) I realised I couldn't manage any more, and luckily was awarded DLA within a couple of weeks and it was renewed this May with no problems for 5 year (thank you, Lord!) . Unless you are the one caring for a child, you really cannot understand what extra care that child requires, over and above another child of that age without their problems-but I honestly know that you are spending more hours caring for your child than I do mine. We never qualified for more than LRM, and that's fine-we don't need it, but on the care side you definitely should qualify if my child did.

Bumpmakesfour, I think Anubis has given you the best advice so far-initially ask for an immediate reconsideration, then appeal if that doesn't work-I honestly feel that a fresh pair of eyes will immediately see this decision was wrong.

Now, for heaven's sake, girl- go get some sleep!!!

Mupette

pcombo wrote: »

Such a scandal that DLA was refused, There we have SCUM bag junkies who feed there bodies with heroin and what ever else they take.

Not forgetting immigrants who were once illegal and claimed asylum. Think they have more rights than anyone.

They get, DLA, Mobility, Incapacity benefit, Free bus passes.... Why!!!

pcombo wrote: »

I dont want any rant about immigration, I was ranting how people who dont need DLA, mobility etc get it and those who do get refused.

make up your mind.. tbh don't post what you dont know/have proof from.. Daily Mail doesnt count

susannicola

dear bumpmakesfour, take no notice of comments from some people as no one knows what its like to have disabled children till it happens to them. my grandson was born perfectly healthy but caught broncolitis at six weeks he was in hospital but was left brain damaged through lack of oxygen we as a family all helped as he needed 24 hr care we put everything we could into it for him disneyland, alton towers, you name it we did it he lived till he was 4 years old that was 13 years ago, but i still remember all the hard work it takes to look after disabled children so would people on here with the wise cracks keep them

Bumpmakesfour

Thankyou hun.You're right..people have no clue till it happens to them.Before I had children you just assume they'll be born healthy and free from any "problems".I used to see parents out there with kids in meltdown mode and think OMG can they not control their kids?Now I am that mum with a child hiding under tables because they find a new place overwhelming.I used to look at kids with tubing for oxygen or feeds and feel so so sorry for them and couldn't help but stare a little...now I am that mum who HATES people staring at MY child with an ng tube or feed pump etc.So I know that those people with no experience of looking after special needs kids can't help but come out with ignorant drivel because I had no clue about life with a disabled child once either.Sure I never actually SAID the things or commented as others obviously feel they have the right to...but guess we aren't all considerate or thoughtful
Really sorry to hear your grandson passed bless him..but glad you packed so much fun and love into his time with you xxxxx

Bumpmakesfour

SuziQ wrote: »

Can you imagine how much it would cost, to hire a team of nurses round the clock to look after your daughter?

Yep!We have never taken any respite offers for our daughter..I gave up my career and gave up on that elusive thing I believe is called "sleep" to look after my daughter myself.Really sorry your marriage suffered as a result of everthing,must have been very hard on you all I really hope you're right about a fresh pair of eyes..feeling so stressed with the whole thing already!

doggle_2

That is uncalled for and disgusting!

You should be ashamed of yourself to even think that.

The petty minded comments that come out of a twisted mind like yours is what is actually wrong with this country!

skipsmum

OP, a couple of years ago my sons dla went from HRC/LRM to nothing on renewal. I phoned up the next day and asked for a statement of reasons, and for someone to look at it again. It was reinstated within a week so it might be worth doing that.

Also if you go over the disability board there are some people there who give really good advice in this situation.

Valli

was going to suggest that you get your MP involved but it's already been done.

And hoping you (and anyone else similarly affected) finds the strength you need to fight on.

clemmatis

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https://forums.moneysavingexpert.com/discussion/365935