Hi All
We have had a number of members contact us recently asking for advice on claiming Disability Living Allowance for their child. We would like to hear from anyone who has claimed DLA and what your experience was and the outcome so we can give them best advice possible.
Hi, I claimed recently but was turned down. I have an 11mnth old who is ‘double’ TOF, the trachea osephegul fistula and tetralogy of fallott a heart condition. I was advised to claim by nurses etc. Joseph had his tof repair @ 3 days old & in hospital for 7wks @ a hospital 50miles from home. He had up until the last month suffered from bad reflux & is on gaviscon, originally ranitidine but now omeperezole. As a result I found it difficult to go out & didn’t like to feed him @ different peoples houses etc. Due to his heart condition he was also fed every two hours as he couldn’t take the volume. He had open heart surgery @ the end of June so this has improved this. Joseph doesn’t take lumps well as this makes him sick, he had a barium last week to check that it hasn’t started to narrow. But he is doing really well & great fun. I was told that as his condition would improve & not seen to be longer than 6months we wouldn’t be entitled. So in my experience it hasn’t been seen as a disability.
I have recently applied for dla and was awarded the highest amount due to the fact that we tube feed freya. it is a complicated form however i had a lady come round to fill it in with me from a voluntary agency. i would advise anyone to speak to their health visitor as they would have all the contacts needed to help you apply for this benefit.
Hi Helene, when living in republic of Ireland for 2 years we were told to apply for the medical card (DLA) as Lewis was always at doctors with chest infections and reflux and we had to pay every time and also had to pay for prescriptions, anyway we did apply and were accepted. now we are back living in northern ireland i am thinking on applying for it again as this is a condition that he will always have.They need all the information we can provide so they can make a better decision, we had been turned down when he was 10 months but now that he is older and able to tell us more i am going to try anyway.It is also a condition listed in the contact a familys website.
love to all
julie logan xx
Hello all, i have applied for DLA for Lewis and have been told it could take 10 weeks,if anyone out there has the Winter edition of Chew ‘2006’ page 4 explains all for children with long term health conditions and claiming different benefits.I sent photocopies from the TOF book to help explain the condition and to help the claim. Good luck to all.
Julie logan
Funny you should mention a past edition of Chew because in just the last few days we’ve posted some recent ones on the website!
If anyone is interested you can find the Winter 2006 edition of Chew by following the link to ‘Newsletter’ from any of the main site’s pages.
And while I’m on the subject we’re also getting the content of relevant leaflets and boklets into HTML format and incorporating them into the main body of the site under ‘What is TOF/OA’. That way you won’t have to download them as pdf files to read them and they’ll also be seen by the search facility. Its still something of a work in progress so it may not be fully completed yet.
we ahve also recently just been awarded the highest amount of dla. Our son has VACTERL ASSOCIATIONS and has TOF/OA and an imperforate anus also and currently has a colostomy.
Made a claim for DLA and was awarded the highest level. My daughter is 5 months old with OA but still in hospital so cannot activate the claim till she is home. I had some help from the family support at the hospital. The main advice was to give as much info as possible and not to put anything positive on the form. It’s really hard to do this as in order to cope you automatically normalise the situation and try to be positive for your own well being.
Your have to tell yourself that your child does need help over and above the norm and that it is a disability and will be long term as most info I read says that kids will need help during their pre school years.
You have to think about how you felt when you first found out what the condition entailed. I completed the form, read it back to myself and then had a good old cry!
Hi Yvonne, hope your little girl gets home soon, i think it’s the title DISABILITY that puts people off but if our children need more care than another child then it’s only right that we claim, i haven’t yet had a reply yet and it must be 6 weeks now. chat soon Julie logan xx
Hi, we are in receipt of DLA for Lucy. We applied not long after she was born but was refused. Then a few months later when she was nearly one and had developed Lactose Intolerance as well we decided to reapply. After a lenghtly conversation with them and lots of the dreaded forms they granted us DLA.
The main things they look for is that your child/baby needs more care than a “normal” child/baby of that age. As we are all aware all TOF babies need extra care day and night. The care can be physical care like feeding them or even care such as watching over your child when perhaps you wouldnt do with a child without TOF. They say that the criteria is that they need prolonged care or care for more than an hour throughout the day and even during the night.
If your child is like Lucy, she suffers from frequent choking episodes and chest infections. They count the hour of care from the minute you go into the kitchen to prepare the meal for your child. Remember things like if you puree food for your child, preparation time, cooking time and then eating time! Therefore anyone who has been turnt down I really would persivere and reapply especially those of you whom are tube feeding.
Hope this helps. Feel free to ask any questions. Teresa
Got a reply today from the DLA and was awarded the highest level for personal care for Lewis, which is good so there’s hope for all. if anybody has any questions please get in touch xx julie
I filled out the forms for DLA when Ned was about a month old my health visitor helped me and we were awarded highest rate care component. This is reviewed every two years I think but we have just filled out the renewal pack and have again been awarded highest rate and will receive it until 2011. I did find it hard to fill out as you really need to put down the worst case scenario. At the end of the day TOF children to need extra support and help and I could not go back to work after maternity leave as Ned was being taken into hospital every few days so the cash did help.
Hi All. I’m Rachel (partner is Mark) and our son Laurie was born with TOF/OA on 3 Jan 07.. we’re coming close to the 1year mark and its been a long haul, but enjoyable none the less. Just wanted to comment on the DLA discussion. We were told at the TOFs conference about DLA by a couple of TOF families - hadn’t heard about it before so on return, we downloaded the form and stated to complete it. After a long slog we eventually lodged it and within three weeks received a letter confirming that Laurie had been awarded DLA at the middle level. We didn’t know the best way to approach it, so we told it like it was.. sometimes hard, sometimes good.. Perhaps we could have got the higher level if we had made it sound more bad than good… We’re extremely lucky with Laurie; he has an isolated TOF/OA and is developing very well in all areas especially weight/growth.. However, as time goes on, we are experiencing many more colds and chest problems… since the Conference we’ve had two admissions to A&E;with breathing problems, bronchiolitus again and back on long term ABX ‘just in case’ and has an inhaler now. Fingers crossed we’ve avoided pneumonia .. the last time he got that he was in PICU for 10 days, paralysed and ventilated for 5 days and coming off the drugs was not a pleasant site. Anyway, the DLA form is daunting, but do try. We were convinced we would not be accepted having read some of the stories here and some of the things you are all going through and having to deal with. I know that the £43 we are now getting for the next two years at least will be a great help. I have to take unpaid leave from work to care for him when he’s sick and its so worrying and scary to see him suffer so much with his breathing - Unfortunately, I had to return to work, albeit PT and that has pulled the purse strings very tight! It sounds from this forum that many of you have great support from various services; unfortunately our Health Visitor had never heard of TOF and only knew what we were telling her, so we felt pretty alone in putting the application together (of course, didn’t even think about this forum!!! - I know now!). We referred ourselves to a speech therapist who we put down on the form - we think she helped. I wanted to attach a recent pic but didn’t know how to resize it… if you were at the conference, he was at the time wearing a helmet to treat flat head syndrome (he has a pic in the conference pictures!).. after 13 wks that came off and he now has the perfect head! Anyway, side tracking here… I’m going to post a new posting about breathing—we need some guidance! Its great to read all your experiences and I wish you all well and hope all our christmases are trouble free!
We have also got higest level DLA. We highlighted how he was prone to getting food stuck, which could be dangerous if he tried to cough up and choked on it. Also that it took us time to puree food etc, as he still can’t manage lumps. However, the main reason I think we got the full amount is due to the reflux and the amount of vomiting, and that this happend DURING THE NIGHT. You have to really think about how much time you spend taking care of stuff like that - you will be taking so much for granted without thinking that ‘normal’ babies don’t need as much care. Even if you choose commercial baby food, try to remember that you do things like that because of the amount of time involved taking care of the baby/child with TOF.
