Child with a disability

Worcsman

Our new born has just been diagnosed with down's syndrome. What do I do next? So many questions rushing though our heads. One fo them of course is this one.
I am on income based JSA. How will this be affected, can I become his carer? I have been out of work for 8 months, recently had to go bankrupt and there is no employment on the horizon for me. Thanks for any advice on offer.

[Deleted User]

I`m sorry to hear your news,but as i understand it d/s children can be very loving and lead long and fulfilling lives,i do hope this is how it turns out for you.
Are you looking for and avaliable for work,if not then you cant continue to claim JSA,however you should consider applying for dla for your baby,i think you can do this after 3 months,if he/she is awarded middle or higher rate care then you can apply for carers allowance.You should perhaps get help with the DLA forms CAB or welfare rights should help.
good luck

Mum2twins98

Worcsman wrote: »

Our new born has just been diagnosed with down's syndrome. What do I do next? So many questions rushing though our heads. One fo them of course is this one.
I am on income based JSA. How will this be affected, can I become his carer? I have been out of work for 8 months, recently had to go bankrupt and there is no employment on the horizon for me. Thanks for any advice on offer.

First of all this must be hard to come to terms with but children with downs syndrome can lead happy healthy lives so keep this in mind, disability benefits will be hard to claim for some time, i have a friend who's son has d/s she was unable to claim disability living allowance until he was a lot older, he also had heart problems most babies with d/s will not need any more care than an average child of the same age unless they have other problems which i sincerly hope your child does not have any, but you will still be able to claim J.S.A for a time, and child tax credits as well does your wife/partner claim anything ?
Carers allowance is paid if your child gets mid/high rate disability living allowance

Hi just found this it says that if our child has additional problems you may be able to claim from 6 to 12 months
http://www.downs-syndrome.org.uk/faqs/benefits.html

Worcsman

woodbine wrote: »

I`m sorry to hear your news,but as i understand it d/s children can be very loving and lead long and fulfilling lives,i do hope this is how it turns out for you.
Are you looking for and avaliable for work,if not then you cant continue to claim JSA,however you should consider applying for dla for your baby,i think you can do this after 3 months,if he/she is awarded middle or higher rate care then you can apply for carers allowance.You should perhaps get help with the DLA forms CAB or welfare rights should help.
good luck

Thanks for the reply, he is 6 weeks old tomorrow and is a smashing lad already, the dla forms are in the post to me now, so far as I can gather, it is going to be a fight to get dla for him. here goes anyway!

merlin68

My friend has a 12 year old with downs and she is having to go to court to get dla for her, even though she atteneds a severe school and is in a wheelchair for most of the time.
Dla is done on care needs not the condition, and as all babies have high care needs you are unlikely to get it. I only got it for my dd as she was tube fed.

dmg24

merlin68 wrote: »

My friend has a 12 year old with downs and she is having to go to court to get dla for her, even though she atteneds a severe school and is in a wheelchair for most of the time.
Dla is done on care needs not the condition, and as all babies have high care needs you are unlikely to get it. I only got it for my dd as she was tube fed.

Are you sure that she is going to court? Has she already been to Tribunal?

merlin68

The tribunal turned her down.

kingfisherblue

Congratulations ont he birth of your baby. I hope he brings you as much joy as my children bring me, although there will no doubt be worries, tears and many problems along the way.

I have a son with DS. He has received high rate care since he was 3 months old (the earliest age at which you can receive it), but he was born with major digestive problems, requiring surgery at birth. He has had substantial care needs ever since.

It can be very hard to accept that a child is disabled in any way, although this does not lessen your love for them. The Down's Syndrome Association are brilliant, especially in the first few months. They have leaflets to download, which I found useful to browse through when I felt the need. There is also an advice line - I think you can arrange to have somebody help fill out the DLA forms. Although there is a charge for membership, if you explain your circumstances and say that you can't afford to pay anything at the moment, they will give a free membership for a year.

If you receive DLA care at high or middle rate, you can claim Carer's Allowance, but be aware that initial awards are often only for a year. If anything changes, it is your responsibility to inform of any changes.

If your receive DLA, let the tax credits office know, as there is a disability element paid in addition to the standard amount. For children receiving HRC, there is also an enhanced disability element.

I wish you and your family a very happy future - please feel free to PM me if you have any questions.

merlin68

What medical problems has he got. If any? Also look up the family fund as they have been a godsend to me. they give grants to disabled children. Contact a family are also good.

Mum2twins98

merlin68 wrote: »

What medical problems has he got. If any? Also look up the family fund as they have been a godsend to me. they give grants to disabled children. Contact a family are also good.

Might be to young to claim as the child has to be severely disabled in order to get a grant, i have used them also
http://www.familyfund.org.uk/page.asp?section=00010001000100050005&sectionTitle=Family+Fund+definition+of+severe+disability

Worcsman

Mum2twins98 wrote: »

First of all this must be hard to come to terms with but children with downs syndrome can lead happy healthy lives so keep this in mind, disability benefits will be hard to claim for some time, i have a friend who's son has d/s she was unable to claim disability living allowance until he was a lot older, he also had heart problems most babies with d/s will not need any more care than an average child of the same age unless they have other problems which i sincerly hope your child does not have any, but you will still be able to claim J.S.A for a time, and child tax credits as well does your wife/partner claim anything ?
Carers allowance is paid if your child gets mid/high rate disability living allowance

Hi just found this it says that if our child has additional problems you may be able to claim from 6 to 12 months
http://www.downs-syndrome.org.uk/faqs/benefits.html

Hi and thanks for the link, my partner claims child tax credits but nothing else, my jsa claim is a joint claim for both of us. and I hope that he is free from the major medical dramas too. after looking round the net all night it seems that I may have a fight on my hands but he should get dla eventually. I will carry on claiming jsa in the meantime. our housing benefit doesnt cover the rent so we will eventually have to move out, we cant afford to though but that is a bridge we will cross when we get there!