Domiliciary Care Allowance - Hemolytic Anemia

bunnie

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Hello all. I have a question and I'd be grateful for answers/opinions. My son has just been diagnosed with a rare and incurable type of hemolytic anemia. He has had this since birth and has been treated for it since he was two months old, he's seven months old now. We've been attending Crumlin hospital regularly for blood tests and transfusions and with this diagnosis we will continue to do so.

My husband is on BTEA and I don't currently work, we have an elder child too, and we are looking into some financial help as we are on a very low income and the cost of travelling to Dublin roughly every week is something we would really appreciate some help with, if there is any we could ask for. We thought we might apply for DCA but it doesn't seem likely that we'll get approved. I don't think they'll consider hemolytic anemia to be serious or life-limiting enough to qualify. I read something i found online called a desk assesment that suggested Hemolytic Anemia is not usually considered severe enough, but Sickle Cell and Aplastic Anemias are more likely to be considered severe enough. Just as a guideline.

I don't know, what do people think? Is DCA not the right type of help for us? And if not, is there anything that might be more relevant? I'm sorry if this is coming out all jumbled, we've only recently been told that his condition will be chronic - until then we'd hoped he could be cured - so anyrhi g that could make his life a little easier would be vastly appreciated. Thanks for reading.
 
I am sorry that I have no idea about what assistance you may be able to apply for but I just want to say that I am so sorry to hear about your little boy's diagnosis. It must be very hard for you all. I hope somebody who knows more about the financial side of things will be able to help...mind yourselves.
 
Thank you emeralds. I think it's important to keep positive and focus on moving forward 90% of the time. And also let yourself be a bit unhappy about it too. Not a lot, and don't get stuck in unhappiness, but do acknowledge it. If you try to deny it it'll just build up and burst out somehow. Probably at the worst possible time (!) A bit of venting now and then helps you to stay positive for that 90% majority of the time.
 
Hi
Sorry to hear about your Little boy , The next time you are in Crumlin hospital ask to see social worker they should be able to help you ,
 
A medical social worker in Crumlin should help you apply for a medical card and the DCA. They will know best if your child's condition has the right criteria for both. There are some allowances that you can also apply for via the MED1 form at the end of the year, only 20% tax relief but every little helps. If there are any charities associated with your child's illness they may be able to offer some financial support as well. Again the medical social worker may help in this. Sorry to hear you are going through this tough time.
 
Thank you everyone for your kind words of support. Now, we never thought about the social worker, we will definitely follow that up. Thank you all again.
 
DCA is based on the care needs of the child rather than their diagnosis. You need to show that they require care and attention in excess of that needed for another child of the same age. There is a private FB group, DCA Warriors, where you may be able to get assistance.
 
Thank you shoppergal, this is why I'm thinking DCA may not be for us. Our son won't need additional care on an everyday basis. So maybe a different form of assistance, just something to help us absorb the costs of travelling to the hospital, medical equipment, that kind of thing. There might not be anything but if there is our son definitely deserves a chance of getting it.

We're going to make an appointment with the social worker. We already know her (unless there's more than one social worker) because when our son was born he was extremely ill -unrelated to his current problem- and she was absolutely lovely, helped us to arrange an emergency passport for him and arranged financial assistance with our medical bills. So we'll be in contact with someone whos worked with us before.
 
Thank you shoppergal, this is why I'm thinking DCA may not be for us. Our son won't need additional care on an everyday basis. So maybe a different form of assistance, just something to help us absorb the costs of travelling to the hospital, medical equipment, that kind of thing. There might not be anything but if there is our son definitely deserves a chance of getting it.

We're going to make an appointment with the social worker. We already know her (unless there's more than one social worker) because when our son was born he was extremely ill -unrelated to his current problem- and she was absolutely lovely, helped us to arrange an emergency passport for him and arranged financial assistance with our medical bills. So we'll be in contact with someone whos worked with us before.

Hi Bunnie,

Yes so sorry to hear about your little boys condition but you should definitely be entitled to DCA as your son requires more care than an average baby of the same age ie travelling to Crumlin is more than what other parents with 7month old babies whether it's weekly or monthly would be doing. It does not necessarily have to be additional care on an everyday basis, just that it's more care than his peers.
The fact that he has been diagnosed with a rare and incurable condition unfortunately will be to your advantage in getting these allowances.

Have you looked into Carers allowance for yourself, that is means tested so if income is low you should also qualify. Get your Consultant in Crumlin to type up a memo detailing your sons condition and send a copy of it off with the DCA application form and the Carers Allowance form.

Best of luck with everything.
 
Thank you Zanna. We will certainly look into Carers Allowance, again I wouldn't have thought he'd be considered ill enough but sure all they can say is 'no'. Thank you for your ideas and kind words :)
 
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