Do you think preemie families should be given financial help?

[Foogirl]

I don't agree about automatic DLA though as DLA is for people who *have* a disability or medical condition meaning they require extra care over and above that of typical baby/child/adult and not just people who *may* develop a disability.

I think the argument would be that a child in NNICU and SCBU does require extra care over and above that of a typical child. If not DLA, maybe a "carers allowance" type benefit would be suitable. The costs can be crippling for those already on lower incomes.

This sounds a fantastic idea - sick leave until your baby leaves NICU, then the maternity leave period starts.

(And the DLA for <28wk preemies would be good too!)

Perhaps this are measures we should consider campaigning for? Does anybody have any experience of successful campaigning? Is an ePetition perhaps the way to start? What does anyone else think? (Maybe I should start a bespoke thread for this - Vermeil, a link to the Canadian guidance online might be helpful)

I'd say Bliss would be a good place to start. I'll have a word with them.

 

[AP]

I don't agree about automatic DLA though as DLA is for people who *have* a disability or medical condition meaning they require extra care over and above that of typical baby/child/adult and not just people who *may* develop a disability.

I would agree, some preemies (like me) just grow up to be perfectly healthy and fine.

 

[Lottie86]

But no child in hospital qualifies for DLA so why should preemies be different?? TBH in NICU/SCBU the hospital provide far more care than the parents do as the nurses are there 24/7 and it is the nurses providing the medical care so I don't think parents should get it as it is not them providing the specialist care that preemies need.


Just my 2p worth

 

[Marleysgirl]

I wasn't actually thinking while they were on NICU, I was thinking after discharge, if there is an extra care need relating to their extreme prematurity that isn't a specific disability but requires more monitoring than a normal termie ... doesn't matter, I don't want to start an argument.

 

[AP]

Ahhh a debate not arguments we're too nice in this section for that

 

[Marleysgirl]

You're right, a debate. I thought I was on t'other forum for a minute there!

 

[Foogirl]

You're right, a debate. I thought I was on t'other forum for a minute there!

But no child in hospital qualifies for DLA so why should preemies be different?? TBH in NICU/SCBU the hospital provide far more care than the parents do as the nurses are there 24/7 and it is the nurses providing the medical care so I don't think parents should get it as it is not them providing the specialist care that preemies need.


Just my 2p worth

I was thinking more from the point of view of the parent rather than the child. Having a child in hospital is difficult, no matter what the age, but after a pregnancy, especially in the first few weeks, there are additional problems. As you said, not being able to drive can be a hindrance, leading to parents either having to take time off work, or spend prolonged time at the hospital. Mothers are often trying to establish breastfeeding or need to express regularly and this means being more hospital based than is necessary than with an older child in hospital. I would also suspect for the most part, babies tend to be in for a longer period of time when in NNICU than generally they are in children's wards (although I realise that isn't always the case) The other thing is, for some reason, children's wards seem more geared up for parents to spend long periods of time there. It is usually possible for a parent to "room in" with a sick child, but this isn't generally possible for so many parents to do in NNICU. We have been in children's ward in Stirling and noticed so much more accommodation for parents whereas in NNICU there was absolutely nothing - although this is better in the new unit at Larbert.

I realise it doesn't fit into the parameters of what DLA is for. Or that carers allowance isn't the best option either. I'm just thinking there is an added load in those first few weeks and trying to find a way to help parents within the existing benefits structure might be easier than creating a benefit that perfectly suits the situation.

One thing I would say is, we are currently trying to get a set of quality standards across Scotland for NNICU and have had various hospital big wigs saying they can't implement certain things for Neonatal because a similar option isn't available for parents of children in children's ward or even for parents of adult children in hospital. This did really annoy me because I'm not sure that's a good enough reason not to do something. Perhaps if they did decide to give additional financial help to parents of preemies, this would give more of an argument to parents of children in hospital long term to allow them to fight for the same thing. It shouldn't be an all or nothing situation.

 

[xxClaire_24xx]

we have been told that ellie is entitled to a disibility payment but tbh i wont claim as we dont see ellie as disabled even though she is classed as it cause she has cerebal palsy but there are people out there who we feel are entitled to it more, after peters dad being paralised from the waist down peter has seen first hand that there are people in more need of help xx

 

[Foogirl]

we have been told that ellie is entitled to a disibility payment but tbh i wont claim as we dont see ellie as disabled even though she is classed as it cause she has cerebal palsy but there are people out there who we feel are entitled to it more, after peters dad being paralised from the waist down peter has seen first hand that there are people in more need of help xx

We took a different view. We also don't need it now as everything is provided for Abby and anything else we can afford to pay for. But the way I see it is, her care needs once she is older and perhaps at uni or even just getting her own flat, might be different and for certain she will need additional help, so the money goes into her bank account t and will be there when she gets to 18 and government help reduces quite a bit.

 

[xxClaire_24xx]

we have been told that ellie is entitled to a disibility payment but tbh i wont claim as we dont see ellie as disabled even though she is classed as it cause she has cerebal palsy but there are people out there who we feel are entitled to it more, after peters dad being paralised from the waist down peter has seen first hand that there are people in more need of help xx

We took a different view. We also don't need it now as everything is provided for Abby and anything else we can afford to pay for. But the way I see it is, her care needs once she is older and perhaps at uni or even just getting her own flat, might be different and for certain she will need additional help, so the money goes into her bank account t and will be there when she gets to 18 and government help reduces quite a bit.

yeah i think we all see it diff we already have accounts set up for the girls and they should have around 18k when they turn 18 we have their child benefit going in and then we pay a direct debit in monthly i think also im still struggling to deal with Ellies disability so actually receiving help would make it seem more real, does that make sense x

 

[AP]

I get you at that point Claire. We had a lady from a charity who applied for us, I just did the signing and all. I really didn't understand why she was applying and I thought we were just going to get lower rate if anything. When the award letter came I suddenly went into bigger denial and I didn't cope for a while, I even phoned and told them they must have made a mistake. Somehow I just didn't want to believe there was an issue. I have no idea what happened, except that it was the hospitals statement that done it

Then further down the line I understood better why we have it, it covers hospital trips, clothes and toys and aids for her development. I stash it away and it really helps when she needs it.

 

[xxClaire_24xx]

I get you at that point Claire. We had a lady from a charity who applied for us, I just did the signing and all. I really didn't understand why she was applying and I thought we were just going to get lower rate if anything. When the award letter came I suddenly went into bigger denial and I didn't cope for a while, I even phoned and told them they must have made a mistake. Somehow I just didn't want to believe there was an issue. I have no idea what happened, except that it was the hospitals statement that done it

Then further down the line I understood better why we have it, it covers hospital trips, clothes and toys and aids for her development. I stash it away and it really helps when she needs it.

yeah i think that further down the line when all her test are done and dusted al see where we stand as she still has further checks xx

 

[Marleysgirl]

I'm sorry, but choosing not to claim DLA doesn't mean that there is more 'in the pot' for those who you feel are more in need. That's not the way it works!

When I thought about the drug addicts & alcoholics who can claim DLA for what I personally consider to be self-inflicted 'disabilities', then I made darn sure that we claimed for Andrew.

Then further down the line I understood better why we have it, it covers hospital trips, clothes and toys and aids for her development. I stash it away and it really helps when she needs it.

DLA, increased tax credits & carers allowance enables us to have one full-time stay-at-home parent for Andrew's early years. Given how many different people visit him to help with his various issues, having one of us home is the best way of helping him.

How nice it must be to 'not need' the money We're poor as church mice.

 

[AP]

I agree marleysgirl, I never thought of it like that. Having seen some IRL people I know claim for less reason I now think "do you know what? She (and us) are bloody well entitled."

 

[xxClaire_24xx]

I'm sorry, but choosing not to claim DLA doesn't mean that there is more 'in the pot' for those who you feel are more in need. That's not the way it works!

When I thought about the drug addicts & alcoholics who can claim DLA for what I personally consider to be self-inflicted 'disabilities', then I made darn sure that we claimed for Andrew.

Then further down the line I understood better why we have it, it covers hospital trips, clothes and toys and aids for her development. I stash it away and it really helps when she needs it.

DLA, increased tax credits & carers allowance enables us to have one full-time stay-at-home parent for Andrew's early years. Given how many different people visit him to help with his various issues, having one of us home is the best way of helping him.

How nice it must be to 'not need' the money We're poor as church mice.

yeah i agree i def agree that you are entitled to and is ellie but its my own issues that im dealing with, ellie has loads of medical problems out with her disabilities thats hard enough for us to deal with and cerebal palsy is mild in her arms and we are still waiting to see how bad it is in her legs

so yeah i think when we get to the point where i need to take more time off work then i will need that money xx

 

[25weeker]

yeah i agree i def agree that you are entitled to and is ellie but its my own issues that im dealing with, ellie has loads of medical problems out with her disabilities thats hard enough for us to deal with and cerebal palsy is mild in her arms and we are still waiting to see how bad it is in her legs

so yeah i think when we get to the point where i need to take more time off work then i will need that money xx

I understand not applying for it. We also could have applied for it due to Holly having a large bleed and all the doctor's seemed pretty certain she would have CP but like you I didn't want to accept that there could be a possibility she would have problems. I don't even think I could even write about it on here until she was about a year old because then you have to accept it. So far we have been lucky that she isn't showing any issues but I am fully aware they may not show until she starts school and needs to concentrate etc.

 

[xxClaire_24xx]

yeah i agree i def agree that you are entitled to and is ellie but its my own issues that im dealing with, ellie has loads of medical problems out with her disabilities thats hard enough for us to deal with and cerebal palsy is mild in her arms and we are still waiting to see how bad it is in her legs

so yeah i think when we get to the point where i need to take more time off work then i will need that money xx

I understand not applying for it. We also could have applied for it due to Holly having a large bleed and all the doctor's seemed pretty certain she would have CP but like you I didn't want to accept that there could be a possibility she would have problems. I don't even think I could even write about it on here until she was about a year old because then you have to accept it. So far we have been lucky that she isn't showing any issues but I am fully aware they may not show until she starts school and needs to concentrate etc.

yeah we were the same things like ellie not being able to feed herself and get things to chew on like any other baby her age used to upset me alot and the fact she isnt taking weight on her legs very good yet i have it in my head she isnt going to walk but she will shes just had alot going on with having her cast on and stuff so yeah theres always the little niggle at the back of your head that there could still be more to come eh xx

 

[Foogirl]

I'm sorry, but choosing not to claim DLA doesn't mean that there is more 'in the pot' for those who you feel are more in need. That's not the way it works!

When I thought about the drug addicts & alcoholics who can claim DLA for what I personally consider to be self-inflicted 'disabilities', then I made darn sure that we claimed for Andrew.

This was part of our decision too. We have both worked bloody hard to get to where we are and apart from CB are entitled to fekk all. Not taking the money benefits no-one, but does mean we get a little something back for once!

How nice it must be to 'not need' the money We're poor as church mice.

Horses for courses. How nice it must be to be able to afford to drop a wage and actually get enough help so you can have one parent at home. I'm very envious. We'd never be able to do that - even if we were entitled to IS and Carer's allowance. I'd guess our mortgage alone is probably more than you spend in a month and with the market the way it is, downsizing wouldn't actually save us any money. Both of us have to work but we've each managed to negotiate terms with our employers for being able to have her at home a couple of days mid week so we work her appointments around that. I'd love to have the choice of not working but we'd be poorer than church mice - and probably living with them What's irritating is, when we moved house 6 years ago, I thought I had done the maths correctly so I would always have the choice. I never bargained on the economy crashing around our ears.

We also could have applied for it due to Holly having a large bleed and all the doctor's seemed pretty certain she would have CP but like you I didn't want to accept that there could be a possibility she would have problems. I don't even think I could even write about it on here until she was about a year old because then you have to accept it. So far we have been lucky that she isn't showing any issues but I am fully aware they may not show until she starts school and needs to concentrate etc.

For sure, filling in the form was very, very difficult. It was only at that point I realised just how different things are for Alan, Abby and me, and how much that impacts on our lives. And that was only the "care" part of DLA. I need now apply for the mobility component and I'm really not looking forward to it.

 

[Lottie86]

The mobility form isn't actually that bad Gayle compared to the care form, it's a really short form and you basically just need to write that Abby can only walk holding onto hands or with her frame and then measure how far she can walk and that's about it! I was expecting a long horrible form like the care form and was v pleasantly surprised.

 

[angelstardust]

Don't write that she can walk when holding hands, write that she is unable to walk unless fully supported by an adult or with the aid of a walking frame.

Or you won't get mobility at all, it is very difficlut to get for children.