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HELP!!! - Carers UK Forum

HELP!!!

Tell us a bit about yourself here.
I'm currently on maternity leave from work, I'm due back in March 2013.
My 6 1/2 month old daughter has downs syndrome and has recently had a complete A.V.S.D repair on her heart.
I'd like to give up work to care for her but I don't know where to start for benefits for our family, My husband works 35 hours a week, the pay really isn't that great.
I've tried applying for D.L.A for my daughter but I was told she couldn't have it because her needs aren't any greater than any other child of her age, (even though she needs monitoring 24/7 for possible breathing difficulties, we have to watch not to over feed her as this could lead to excess fluid on her lungs, and she's on regular medication for her heart).
I don't know where to start looking for help with benefits or if I'm "entitled" to be a carer if my daughter isn't in receipt of D.L.A. This really infuriates me because she does have a disability but can't receive disability benefits, why call it a disability benefit if disabled people can't receive them!
Any help advice or direction will be greatly appreciated!
Thanks in advance!
re apply for dla and also appeal also ring the carers uk helpline they should be ale to help you with benefit enquiries
Hello M&M's Mummy and welcome to the forum Image (can I call you M&M for short Image Image )

Starting points ?

Carers UK Adviceline (details on main website) - if the line is busy either leave a message or email them, they will get back to you quite quickly.

Citizens Advice Bureau

Your GP or Health Visitor (do they still exist ?)
Welcome to your little bundle. Mine is now 18 (not so little any more) and I am still learning about the benefits system, it is quite complicated and keeps changing, so you need to stay on the ball. However, most babies with DS get DLA by their first birthday, with few or no hard questions asked if there is a medical condition as well. Excellent guide here:
http://www.downs-syndrome.org.uk/about- ... efits.html

DLA could be higher or middle rate, certainly enough to passport you to Carers Allowance. Low income families can also claim tax credits and sometimes housing benefit. The key thing is to get help from a social worker or welfare rights adviser when filling out the forms, this really helps your chances.

Dont forget you can work and claim Carers Allowance: as long as your income after pension contributions, tax, national insurance and care costs falls below £100 per week, you are in. And unearned income doesn't count either.

I pay extra into my private pension plan each fortnight in order to keep my income below the £100 and claim CA, and with flexible and self-employment earnings they are willing to "smooth" them over a longer period, as much as a year in some cases.
Thank you for your help and advice i will follow all, see where we get, and let you all know what happens. thanks again!
Hi M&M,

Welcome to the forum! Just wanted to let you know about the Quick Guide to Caring on the main website here: http://www.carersuk.org/help-and-advice ... -to-caring The section on getting practical help could be quite useful to you in relation to what benefits are available.

Also, as Susieq said - the Carers UK Adviceline will be able to tell you what you're entitled to based on your individual circumstances and how to get it - best to email them on adviceline@carersuk.org (if you leave a phone message they won't be able to get back to you, and sometimes it's hard to get through).

Best wishes,
Lucy
Hi M&M (love those sweets!)

Just wanted to welcome you to the forum too. As you can see, someone usually around to offer advice and support here! Enjoy the forum and I hope you manage to get things "sorted" soon.

Bell x
hello M&M, (the peanut ones are lovely Image Image ), congratulations on your gorgeous littl'un and a welcome from me too.
phoebe x