New baby with Down's - any help re benifits?

kingfisherblue

Congratulations - I hope your daughter brings you as much joy as my son has brought me. Angelicmary gives good and factual information in her posts.

From your OP, it doesn't sound as though your daughter has any health problems, although you are probably aware that this may change over the years.

You can only claim DLA for care from the age of three months, and then only if the additional care needs are expected to last a further six months or more. Obviously all babies need a high level of care - to get DLA, the care needs to be above that of an average child of the same age. Mobility isn't available until age 3 for higher rate, or age 5 for lower rate. FWIW, my son has received high rate care from three months and high rate mobility from three years - he has an indefinate award and is twelve years old. Having said that, he does have a number of medical problems as well as the learning disability, and his care needs are high. He also has problems with mobility due to his other conditions.

Even though you may not be able to claim DLA at the moment (and none of us can say whether you can or not, as we don't have the full picture - you may have left lots of details out of your post for all we know), bear it in mind for the future. If you do claim it at any point, inform Child Tax Credits as it could increase the amount you receive.

I would suggest that you contact your child development centre, who will be able to help you with your daughter's needs. They can help her development to progress with the provision of Portage (if it is available in your area). there might be a Down's group in your area if you want to join. My son was nine months old before we joined, but it was a more positive experience than I had expected. Unfortunately, it folded when he was three, but we still see a couple of the families.

The Downs' Syndrome Association offers support and information - as well as a very positive journal.

Most of all, enjoy your baby. It won't be long before you are looking at nurseries and schools for her - even though it might seem a long way off, time goes so quickly.

Broken_hearted

Congratulations on the birth of your little girl.

Downs like most disabilities cover a wide range, I hope your daughter is one of the lucky ones who goes through life with few problems.

Nara

I got DLA for my daughter who suffered from severe silent reflux and also carer's allowance.

I didn't even think about applying until i saw some posts on a reflux forum from other mums saying they had been able to get it, so i thought it was worth a go, they wrote to my DD consultant at Great Ormond Street and even he said i wouldn't get anything, but he filled out the form and low and behold i got awarded it.

I was totally honest in my account of the extra looking after my DD needed and all her meds, ofc so was the doctor.

She had trouble feeding and gained weight very slowly, she screamed 24/7 and wouldn't sleep more then 2 hours at a time night and day. This went on for months as i battled our GP to get a diagnosis, in the end i found out for myself from the internet, i then had to see NHS doctors, by 9 months she was no better and screaming everytime she swallowed one bite of food, in desperaton i booked for her to see a private consultant at GOS hospital. As i was breastfeeding i had to go on a no dairy/soya/egg diet in case of allergies, she tried about 8 or 9 different meds in the meantime.

I would imagine you will have to wait and see how your DD does in reguards to feeding and sleeping etc before deciding if to claim or not, she may have no problems and i hope she doesn;t have reflux problems as i can honestly say i nearly had a breakdown trying to look after my DD, people don't realise how difficult it is to have this child who wouldnt feed and just screams in pain constantly, and the lack of sleep is enough to drive anyone over the edge.

So i would wait like people say until 12 weeks, if thats the earliest you can claim and see how you are all doing:)
And a big congrats on her birth

PS: Also i remember when i fill out forms for other benefits such as child benefit and child tax credit these ask if you have a child with a disability so i presume this will get you a bit extra!

sleepystar1975

I came on here to say about the 3 month/12 weeks thing, but it looks like that's been taken care off.
It may be worth asking if you are entitled to re-imbursement of excessive travel and parking if your baby needs multiple trips to the hospital for outpatient appointments. But I think that too was adressed by a previous poster.
There are lots of helpful groups that you can turn to, both on a national scale, like the down's syndrome association, and possibly on a more local scale - ask your midwife/health visitor for information.
Join in as many Mum and Baby groups as you feel confident too, if a surestart group operated in your area, they may offer baby massage groups etc.

So, all that's left for me to say is many congratulations on your baby girl, enjoy her, as before you know it, she'll be a hurricane of mischeif!

Indie_Kid

Nara wrote: »

So i would wait like people say until 12 weeks, if thats the earliest you can claim and see how you are all doing:)
And a big congrats on her birth

I think you can claim earlier; but they'll only pay from when the baby has had care needs for 12 weeks.

LittleTinker

angelicmary85 wrote: »

Hiya,

I seen the title of your thread and had to stop by to post. Congratulations on the birth of your baby!

I have a wee boy with Down's and the first 3 months with him were like a living hell. Although I'm ashamed to say that, it's the truth.

It took between 1.5-2hrs to feed him everytime he needed milk and as he was fed every 3 hrs, we only had about an hour between each feed before it started again. Even through the night I sat up with him for an hour or so just to take one ounze of milk, I was reduced to tears through sheer exhustion. He also got 6 x 20 mins of physio a day but we were refused DLA.

My wee man did need alot of extra care back then but now, at nearly 17 months he can stand, he's trying to cruise, he can crawl at some speed and we don't need to do anything 'special' with him as he is doing so well.

We never really needed the services that were available to us so if you don't want to get involved with them just now you don't have to, we never seen the pead until DS was about 7months old.

My advice to you would be to ride out the difficult part just now as you may find that unless your beautiful wee girl has health probs, you won't get DLA anyway.

I would also like to say that your wee girl should get as much tummy time as possible, even if she doesn't like it very much - my wee man used to whimper but I let him get on with it. The peadiatritian (sp?!) told me that was the best thing I could have done for him as he wouldn't have advanced so quickly without my help at such a young age as it helped his trunk muscles develop.

The best piece of advice I could give you though is to enjoy your baby - she'll soon be up to all kinds of mischief and as children with Down's have slightly less awareness of danger than 'normal' kids, you'll soon not be able to let her out of your sight!

There is so much I could post here but I don't have the time just now but feel free to pm me of you need any advice.

All the best!

Lots of babies are just as bad at feeding when they are tiny. I remember one of mine being a nightmare as she fed and fed and fed........she never seemed to fill up and never slept for long.

It is these reasons why DLA isnt paid out to babies so young, as a lot of the issues are down to the child being a baby, not being they have an illness or condition.

Your baby may have been just as much hard work had he been born without Downs.

Im glad all is well now though

mrbrightside842

I've no idea about benefits but just wanted to congratulate you on the birth of your baby girl

nannytone_2

congratulations!
people get the babies they deserve............. and saying that is a positive!
special people get special babies!
my middle grandson was 'normal' til 18 months then contracted viral encephalitis. it left him severley disabled, and to our horror he suddenly and unexpectedly died in may.
hand on heart i can say he was the light of our lives.

you take pride in your beautiful baby and enjoy every moment!

angelicmary85

LittleTinker wrote: »

Lots of babies are just as bad at feeding when they are tiny. I remember one of mine being a nightmare as she fed and fed and fed........she never seemed to fill up and never slept for long.

It is these reasons why DLA isnt paid out to babies so young, as a lot of the issues are down to the child being a baby, not being they have an illness or condition.

Your baby may have been just as much hard work had he been born without Downs.

Im glad all is well now though

Thanks for your reply.

It wasn't that he wasn't full, he couldn't suck the teat and would become very tired trying so one feed of about 3oz would take up to 2hours to give him because he couldn't feed properly.

The feeding wasn't just the issue though - it was the physio aswell. How many 'normal' babies do you know that need 2hours of physio a day? There was also the trips to the hospital/gp surgery for blood tests and random check ups.

In my opinion, he should be in receipt of DLA now as his pincer grip is still not fully developed so cannot feed himself. Children/adults with Down's cannot co-ordinate breathing the way 'normal' people can so they take more time eating and as (I believe - please correct me if I'm wrong) guidelines state, anything over and above an hour of 'extra' care can qualify for DLA - Does taking up to 45mins to eat a meal, 3 times a day count along with the fact I cannot let him out of my sight as he has lower sense of danger and has slower reactions to falling over etc so doesn't put his hands out when he falls - he hits his head against our concrete floor.

His muscle tone is still slightly low around his hips so cannot stand for prolonged periods of time whereas children his age are walking, starting to speak, holding their own spoon/fork.

I still think your post that said 'what makes you think you can claim...' seems a little ignorant to the condition - but please don't take offence to that as I too was ignorant to what effects Down's can really have on a child. I thought, for the most part it was slightly different facial features, a huge tongue and shorter limbs but there's so much more to it than that.

Wow...I think I need a cuppa now!

Indie_Kid

angelicmary85 wrote: »

In my opinion, he should be in receipt of DLA now as his pincer grip is still not fully developed so cannot feed himself. Children/adults with Down's cannot co-ordinate breathing the way 'normal' people can so they take more time eating and as (I believe - please correct me if I'm wrong) guidelines state, anything over and above an hour of 'extra' care can qualify for DLA - Does taking up to 45mins to eat a meal, 3 times a day count along with the fact I cannot let him out of my sight as he has lower sense of danger and has slower reactions to falling over etc so doesn't put his hands out when he falls - he hits his head against our concrete floor.[/QUTE]

Yes - to claim DLA (lower care) the disabled person needs care for at least one hour per day. Regarding no sense of danger - how old is he?

I still think your post that said 'what makes you think you can claim...' seems a little ignorant to the condition - but please don't take offence to that as I too was ignorant to what effects Down's can really have on a child. I thought, for the most part it was slightly different facial features, a huge tongue and shorter limbs but there's so much more to it than that.

Wow...I think I need a cuppa now!

I was the same until I met my friends' son.