Do you think preemie families should be given financial help?

[angelstardust]

As for the original question, I don't think they should get any form of benefit as such just for having a premature baby but I am in favour for serveral things for prents of a child in hospital (regardless of age).

Free parking at hospitals.
Travel pass (after all those attending a court hearing get them!).
Meal vouchers or a good discount on canteen meals.
If the hospital is not within travelling distance, accomidation should be free of charge.

With regards to time off work I'd like to see some sort of 'dependants leave'. Different to sick leave since you are not sick but it should pause maternity and paternity leave.

A premature baby in hospital is no different from an older child in hospital so I don't think there should be anything different, both are stressful and both are costly.

DLA is different because it is for a disabled child and prematurity does not always equal disabled.

 

[Lottie86]

Ah I was just going on the fact that our physio told my friend to write that her son could only walk when holding hands or with his frame as full support implies the child need trunk support (ie someone holding them round their middle as well)

It's prob another one of those 'depends who you speak to' things as whilst most of F's people are au fait with dla forms I've had several people tell me to fill in his forms based on a worst case day and was shocked when I said no I hadn't and wouldn't do that as you aren't supposed to Apparently most people do still fill it in based on the worst case scenario which annoys me somewhat as it doesn't create a level playing field.

I often think it would be far easier for parents for them to just scrap the dla forms and come and spend 24hrs with each child so they can get an actual idea of how much day and night care a child needs.

 

[angelstardust]

Depends on how often your worst day is. Ours seem to be getting more and more frequent. Wheelchair use has went from twice in a month to twice in a week (and only twice because we don't go out weekdays!).

 

[mummy3]

I'm very torn with this.

I have 4 preemies, all have needed NICU stays, although thankfully not as long as alot of women here My youngest has had problem after problem related to her prematurity and a recently diagnosed skeletal displasia, we have a nurse visit to weigh her and she gets physiotherapy. We pay via health insurance as we're in the states now and our out of pocket for all the appointments etc was $12k, we had to pay that!!! On top of that, think childminders, taxis to hospital as hubby was working (he didnt get more than a couple days off and I have epilepsy so cant drive) and you're looking at easily 20K altogether. We're certainly not rolling in the money either. Now sure, would be brilliant to get help towards that, any help, but we planned our child knowing there was a fair chance of her being preemie so I feel its our responsibilty to pay for her We save like mad, hubby works very very hard, with freelance on the side to make this work.

Now I know others who are surprised to get a preemie or the pregnancy was unplanned so yeah can see where this would be helpful, I guess I dont see how it can be implimented? I'd say meals if you're bfing and free parking/help with gas would be fair? Also just having a preemie doesnt mean they're needing disability, I'd say wait and see with the option to apply if it materialises.

Those that get these high rates but stash it away, surely that means you dont actually need it right now? How do you know what care will be needed in future? If you're able to save a fair fortune for the childs future, why should that be denied to another child that happens to not be preemie I guess?

That said, NICU here provided dinner for me as I'm bfing and that was priceless (although we pay) and they were throwing formula at us from all angles when Eilidh needed fortified breastmilk!

 

[xxClaire_24xx]

Depends on how often your worst day is. Ours seem to be getting more and more frequent. Wheelchair use has went from twice in a month to twice in a week (and only twice because we don't go out weekdays!).

hi see your from ayrshire where abouts xx

 

[AP]

Stash it away wasnt a good word from me tbh, sounds like a pot of cash which is so not the case here!

I feel very uncomfortable discussing DLA with anybody, and on here there's still that part of denial in me and I think we shouldn't have i because i would like to believe nothings 'wrong'. But in reality we would struggle often.
We don't (and I doubt anyone else here) receive DLA because we have preemies. It's nothing directly in regards to that, but the issues they face daily.

I wrote further on this but deleted because I don't want to explain our personal circumstances to a forum, it's raw

Now who flipping bumped this thread!!!!

 

[mummy3]

Stash it away wasnt a good word from me tbh, sounds like a pot of cash which is so not the case here!

I feel very uncomfortable discussing DLA with anybody, and on here there's still that part of denial in me and I think we shouldn't have i because i would like to believe nothings 'wrong'. But in reality we would struggle often.
We don't (and I doubt anyone else here) receive DLA because we have preemies. It's nothing directly in regards to that, but the issues they face daily.

I wrote further on this but deleted because I don't want to explain our personal circumstances to a forum, it's raw

Now who flipping bumped this thread!!!!

I got wrong end of stick then, sorry

I think its raw for every parent who has a child/children who have special needs and need extra help

Also I'm not in Uk anymore so have absolutely no idea how it works anymore so really should keep my mouth shut

 

[angelstardust]

You can't stash DLA, if its being saved long term (ie, not being saved for an expensive peice of equipment but saved for the furture) they can and will stop DLA and make you repay it.

DLA is ALWAYS a touchy subject, even within specific support groups, there is always a 'what rate do you get? But I do more that you, they are worse than so and so who only gets'. But DLA discussions belong in the special needs board, not here.

Course, my premmie is now 6 so I am far more used to the whole special needs child world.

 

[Foogirl]

You can't stash DLA, if its being saved long term (ie, not being saved for an expensive peice of equipment but saved for the furture) they can and will stop DLA and make you repay it.

I'm not sure who told you this but it is absolutely incorrect. As a non-means tested benefit, it makes no difference how much money you have, whether or not you get it, the entitlement is for the condition. That I can pay for what Abby needs at the moment is irrelevant. That I choose to save the money for her at a later date is my business. The DWP cannot be so prescriptive with how people choose to use benefits, otherwise they could equally say someone getting DLA and using it to pay the gas bill or for food shopping and perhaps using charities or jumble sales to buy cheap equipment for their children should pay back their DLA benefit. The only time they can ask for it back is if it is claimed fraudulently. Taking it when you don't need it isn't fraudulent, taking it when there is no entitlement to it, is. Abby is entitled to it.

Those that get these high rates but stash it away, surely that means you dont actually need it right now? How do you know what care will be needed in future? If you're able to save a fair fortune for the childs future, why should that be denied to another child that happens to not be preemie I guess?

Me claiming the benefit that Abby is entitled to, does not mean another child (preemie or not) cannot claim it. DLA is for any person (child or adult) who requires additional help with care or mobility. The reason it was suggested that DLA could be claimed when you have a preemie, perhaps in the first 6 months, was that it is an existing benefit and it might be easier to introduce help for preemie parents within the existing benefit structure than trying to create a new benefit.

I do "stash" the benefit. And I have no problem with that. I don't know the level of care Abby will need when she is older, but I know for sure she will need additional help. The reason I want to be able to put it away for her, is there comes a time, when a child turns 18 that much of the help and assistance they get which is government aided at the moment, disappears. She won't get the same regular physiotherapy, the orthopedic shoes and to some extent the walking aids she needs. If she continues on to further education, which I am certain she will, she won't get any additional support unless she chooses one of a very small number of universities / colleges and will have to pay for that herself. Even looking for flats to rent or buy when she wants to leave home will be difficult as her choice will be limited and that always comes at a cost. Whilst my husband and I work our arses off in relatively well paid jobs, pay thousands a year in taxes, we can afford to pay for any equipment or additional therapy she needs, but we also want to secure her future and the extra money we get in DLA benefit helps us do that. I suppose, if it makes people feel better, you could say we use her DLA for extras but are still able to save a couple of hundred pounds a month for her

It is also worth noting that Abby will not ever be able to have medical or travel insurance - indeed she will likely not even be able to have life insurance. Being born prematurely, and having had abnormalities show on a scan when she was 2 weeks old means that everything is considered a "pre-existing condition" so no-one will want to provide cover. If there is anything I can do to help her with that, and that includes looking for any benefit / grant she is entitled to, I will. I will never apologise for taking benefits from the government when I've paid so much bloody tax over the years and will continue to do so.

Fair play to you for being able to budget and have insurance so you can afford to do all this. Being my first child, frankly I never thought "oh I had better save extra hard and budget just in case my child is born early and goes on to develop a neurological condition" I would suspect most preemie parents, are in the same situation.

 

[angelstardust]

Foogirl, it was someone at DWP that told me that. The benefit is called Disability LIVING Allowance, its there to cover the costs of living with a disability and I can assure you that people have been made to pay back DLA that has been paid into savings accounts on the basis of they were not using it to better the childs day to day living. The entitlement is actually based on how the condition affects the childs day to day living, not the condition itself.

Also it is not your DLA, it is your childs DLA. Fair enough if you do make plenty and would be saving that money anyway, but if someone received DLA for a child, paid the money into a savings account and planned on giving the child a lump sum of cash, then they can seize it back.

 

[Marleysgirl]

Foogirl, it was someone at DWP that told me that. The benefit is called Disability LIVING Allowance, its there to cover the costs of living with a disability and I can assure you that people have been made to pay back DLA that has been paid into savings accounts on the basis of they were not using it to better the childs day to day living. The entitlement is actually based on how the condition affects the childs day to day living, not the condition itself.

I think that it would be difficult to prove that the DLA wasn't needed for the child's care - more likely is that the DLA claim in those cases were proved to be fraudulent (exaggeration) and repayment was ordered on that basis.

In Foogirl's case, she is choosing to save a sum of money equivalent to the DLA. She is most likely spending the DLA on additional care needs for Abby; and saving from her own or her partner's income. It is just easier to describe as "saving the DLA" because that only takes three words and my description took nine words.

 

[Foogirl]

lol. yes Marley, if it suits people to think that's how we are doing it, then so be it!

But at any rate, there is nothing in the rules which either proscribes nor prescribes how any benefits are spent. Apart from being nigh on impossible to police, it amounts to an interference from the government which is a step too far. They cannot reclaim saved benefits, just like they couldn't take back child benefit from a mother who spends it on crack. They certainly couldn't take back the "health in pregnancy grant" if it were spent on sweeties!

The confusion may be that if you were to save one type of benefit whilst claiming other, means tested benefits, those savings would affect the amount claimed. And your overall benefit would reduce

I fully understand the benefit is Abby's, which is why it goes into her savings account and not mine. I see no problem with taking the benefit for her future use, to provide the things she will no doubt need when the government deems her no longer in need of the wraparound care she gets from the local council and NHS at the moment.

Frankly, if anyone has a problem with it, they are welcome to swap their lives without a disabled child and without DLA for mine. I'd love to be in a situation where she wasn't entitled to it.

 

[Marleysgirl]

But at any rate, there is nothing in the rules which either proscribes nor prescribes how any benefits are spent. Apart from being nigh on impossible to police, it amounts to an interference from the government which is a step too far. They cannot reclaim saved benefits, just like they couldn't take back child benefit from a mother who spends it on crack. They certainly couldn't take back the "health in pregnancy grant" if it were spent on sweeties!

The confusion may be that if you were to save one type of benefit whilst claiming other, means tested benefits, those savings would affect the amount claimed. And your overall benefit would reduce

This is my understanding too, but I'm not an expert and could be wrong. I'm trying to remember if I've seen any mention of repayment of a child's DLA over on t'other forum.

 

[angelstardust]

Did I actually say anything about what Foogirl is doing? I simply stated that DLA is not intended to be saved for the future.

I remembered why I stopped using this forum, if you're not in the clique you are not entitled to an opinion.

 

[Foogirl]

Yes you did say something about it, you said they could legally come to me and make me pay it back if I saved it.

Opinions are fine. Just as everyone is entitled to challenge them. Incorrect statements of fact do need to be corrected, which is all that has happened. And there is no "clique" this is not high school, just a bunch of mums, some of whom agree and some of whom don't. I think you'll find I've disagreed with Marley and Atomic plenty.

 

[AP]

I wouldn't ever say its a clique here

Any how- threads derailed.

The thread was intended to ask regarding the hospital stay.

Since I wrote the thread (a few weeks after discharge) Family Fund gave us a nominal sum to cover petrol costs, travelling, etc. This had nothing to do with DLA as we had not claimed at that point, so they must have an exception and this probably is available for any long stay.

Foo you've disagreed with me but I respect we are very different people.
Still love ya tho

 

[25weeker]

Since this thread has now covered various things now and we were talking bout savings for children. Can anyone recommend a good account that a child can't access until they are about 25? Holly has her trust fund she will get at 18 but I don't want to give her all the money then because I can just about remember back then and I probably would have spent it on clothes, shoes & handbags! I have been looking but can't see anything.

At the moment her money sits in our account but need to sort something soon!

 

[toothfairyx]

I'm not sure you could lock it away anywhere until 25 unless you had it written into trust, in which case you need to speak to a solicitor.

I'm the same with mine - not too keen for them to have all the cash at 18!

 

[toothfairyx]

Just also wanted to add I am reading this thinking how strong you all are to deal with the hands you have been dealt. I don't see how a benefit awarded to a child, and administered by a parent could be policed in such a way that it could be taken back if it wasn't spent on something for that child in a defined period of time. If it was means-tested then fine, but it's not. Surely all that is happening is some money being put aside for the future of the child as I'm sure would be done in the absence of the benefit if people could afford to?

 

[Marleysgirl]

I've always thought of the Preemie section of B&B as being one of the most non-cliquey places online. We seem happy to disagree with each other, but always with respect for each other's individual situations and the choices that we/they have made.