|
Post by Gemma on Feb 2, 2006 21:40:57 GMT
Does anyone know if we are entitled to this? And if so how much and how do we claim? I have heard its from 3 months but thats all I know. Is it different depending on each child or just there disability?
Thanks.
|
|
|
Post by Rilith on Feb 2, 2006 21:50:56 GMT
Yes we are entitled to it. It all depends on the wording. We are still waiting to hear from our application for Holly. We had to go into detail of feeding, heart problems and how it affects us. Its a total nightmare of a form. Send for the pack ASAP and get it back by the time LO is 12 weeks old
|
|
Gemma
Junior Member
Posts: 72
|
Post by Gemma on Feb 2, 2006 22:51:56 GMT
Thanks hun, how doI send off for a pack though?
|
|
|
Post by Rilith on Feb 2, 2006 22:56:55 GMT
Just give them a call. I'm sure you can google to get the telephone number. I did have it but I have no idea where I put it.
I might google it myself cus I still haven't heard from them its been a month sice I sent it off grrrrrr
I'll do it in the morning...LOL
|
|
|
Post by mashpotato on Feb 3, 2006 9:47:25 GMT
Hi gemma just thought i'd tell you about our experience with DLA
I put in the claim when Saul was 12 weeks (Oct), found out their reply had got lost in post over the xmas and we'd nearly missed the date to appeal by as they had turned us down. also sent off for carers, as the claim for that needs to be in upto 3 months after you've put in a claim for DLA or they won't give it to you. As we got turned down for DLA and you need at least medium rate to get carers that would be turned down but at least the claim was in so could be appealled against later.
At the time Saul breastfeed every other hour for an hour a time, about 3/4 times a night. His muscles were weaker than a 'normal' childs, generally he was harder work than a normal child.
we appealled got the lower rate (Feb) but social worker said really we should at least be on medium. so appealled again got just lower rate, appealled again still lower rate
Got sent to a tribunal hearing a year after the original low rate was awarded. Had to tell a board of people why he should be entitled to a higher rate, but had to remember how much care he needed, time and how many feeds, nappy changes from when he was 6-7 months! If i'd known i would have kept a diary instead i had to sit there and try to remember on the spot!
Eventually they gave us medium rate back dated to when he was 6 months not 3. Luckily for us the carers allowance had turned us down after the date the DLA was awarded back to making them in the wrong so we could get that back dated to.
Got a nice back payment of about £4000
Some points about DLA, they do not need to read any medical information such as doctors letters, paed's letters ect, to decided if your entitled. Someone at a desk with no medical experience reads your booklet in 1 minute and decides if your entitled. Always write down the worst cases for your child, their worst days where they're really difficault and always start each answer with 'they have Downs Syndrome'
A friend has a boy with spina bifida, he has leg splints, cant walk properly and will later on be in a wheelchair. He needs lots of care, and they got higher rate then one day for no reason a letter came telling them their DLA was being stopped as the DLA had decided her son didn't need extra care anymore! They hadn't asked anyone for medical info or even asked the family about him, just decided to stop it. She spent ages fighting to get it back
|
|
Gemma
Junior Member
Posts: 72
|
Post by Gemma on Feb 3, 2006 15:02:42 GMT
Firstly I would just like to say thanks for replying, reading your experience is very enlightening! And I will take on board all your advice. Secondly Claire I would just like to say WELL DONE ON BREAST FEEDING!!! That must of been such hard work for both of you, I tried BF James on/off for 2 weeks! I kept my milk up by exclusivly expressing and giving him it into a bottle but it was soooo tiring as James fed every two hours. Then I got mastitus in both my breasts and couldnt do it any longer! So well done again hun! James just couldnt latch on,didnt even know what to do with my breast. Rilth, thanks. iI will google DLA now and see if I cant find it.
|
|
|
Post by lizzymd² on Feb 3, 2006 15:11:08 GMT
Thanks, this is helpful for me too. I phoned them the other day for a pack, so should receive that in 1 to 2 week thet said.
|
|
|
Post by Jojo on Feb 3, 2006 17:53:20 GMT
Gemma...B/f was exactly the same for me..managed for 2 weeks, by mainly expressing, so yes well done mash!! I B/f my older dd's with no probs but Lisa was soo tired all the time...she'd suck for about 5 mins and fall asleep!! On the DLA subject. I'm not getting it atm as apparently Lisa is exactly the same as all other kids of her age...hmm!! And...yes she's doing well...BUT it has taken a lot of time and work to get her to keep up with the 'norm'. Not that I mind for a minute doing it...just a bit annoying. I'll try again in afew months. xxx Opps....not annoying helping Lisa...annoying that DLA are such a nightmare!!
|
|
|
Post by mashpotato on Feb 3, 2006 19:29:17 GMT
Jojo do you have a social worker or attend any special needs centres that have people that can help with DLA. They turned us down as they said saul was no different to any other child. And certainly now the main thing that appears different is his lack of speach but developmentally assessed by a pediatrician they still put him back 12 months. thats why the social worker faught for us to get medium rate, as she had a downs daughter and knew it takes a lot of work to help tham achieve with their peers. you should definately try to get something from them
|
|
|
Post by Jojo on Feb 3, 2006 20:33:32 GMT
Someone helped me fill the forms in, but as I didn't really have anything to complain about, I suppose that went against the decision.
That was a couple of months ago now though so I will give it another go in April when Lisa is one.
I think I'll get my portage worker to either help me this time, or she may know someone better.
|
|
|
Post by Rilith on Feb 3, 2006 20:42:06 GMT
How long did it take for you all to hear about it?
I feel like I have been waiting forever (about 4 weeks now I think?)
|
|
|
Post by Jojo on Feb 3, 2006 20:48:00 GMT
Oh I can't remember, was a LOOOOONG time though...you should get back payment though.xxx
|
|
|
Post by Rilith on Feb 3, 2006 20:53:31 GMT
Cool, I'm going to ring them Monday anyway, just so they remember we are still there...PMSL
|
|
|
Post by Rilith on Feb 9, 2006 21:57:06 GMT
I contacted then yesterday.
It has only just gone to the decision maker and they have asked for more information from our GP.
Is this good or bad???
|
|
|
Post by mashpotato on Feb 10, 2006 8:47:35 GMT
Well its good if your GP agrees there is loads of things your child needs help with. But if they don't agree then it will count against you.
no idea why they've asked for that when they tell people they don'tneed medical advise to make decisions
wish they'd make up your mind.
Jojo when you fill in the forms again even if it seems the child doesn't need extra help at that time, you have to always write the worst case scenario as aweful as it makes the childs life sound. Make sure you say they have downs at the start of every answer. As an example we'd say things like saul got up 4 times a night even if that was now becoming once a night, as this had happened. He did feed for an hour a time every other hour but slowly that became every few hours, but the first sounds so much more work.
|
|
|
Post by Jojo on Feb 10, 2006 10:06:49 GMT
Thing is mash, she is good as gold...and all the professionals know that...so if dla ask them, they'll tell them how well she's doing!!
Not too bothered tbh,...just wait a bit longer ans see how she gets on.
|
|
|
Post by beckasmum on Feb 15, 2006 2:10:02 GMT
Hi there it has been most interesting reading your experienceswith the dla, I knew nothing about it until my health visitor said we should claim for Becks so she called and requested a claim pack on our behalf, when we recieved it she also helped us fill it in and made a photocopy before we sent it off this was before Christmas.
Anyway we were redecorating at the time and putthe form in a safe place as not to get it thrown out or messed up by the time we sent it off it got there 2 days after the date they stamped it therefore resulting in them sending a letter out demanding us to tell them why it wasn't sent back in time.
We have since sent that form back also that was posted back to them on the 1st of this month but we havent heard anymore from them as of yet. My advice to you is if you do claim to keep notes of everything photocopy the claim forms as to let you have a copy of what you have said and keep note of the date you posted it back to them.
Oh one more thing is in the letter I recieved back from them regarding the claim they mentioned that they would be requiring more info from rebeccas GP, Health Visitor and Hospital Paediatrition for more information.
|
|
|
Post by Rilith on Feb 15, 2006 9:05:26 GMT
We have just had all those forms too, We should have sent our claim in on the 2nd Dec, but didn't send it until beginning of Jan. We just explained to them that she was in ICU at the time.
|
|
|
Post by beckasmum on Feb 15, 2006 9:24:09 GMT
It just makes you feel like they don't really want to help you, does anyone else feel this way??
|
|
|
Post by mashpotato on Feb 15, 2006 9:47:11 GMT
it is very much like they don't want to help the people that need it, but others that are fine seem to beable to say i have back probs and get it straight away. Years ago the government wanted to lower the amount of people on the doll so they put them onto DLA, thats why the moneys so tight and its harder for us to claim it
|
|
|
Post by mashpotato on Feb 15, 2006 9:51:52 GMT
And jojo, i think if they came and saw Saul they'd say his fine doesn't need it, but as the social worker said, he has a disability that can't be treated. He will have it for life and it will slow his progress in some ways, he may not be a quadraplegic (sp) and need that level of care, but he is disabled and needs extra care, and thats what DLA is supposed to be for.
You don't have to take 'normal' children to repeated, blood tests, physio, speech therapy, occupational therapy, developmental assessments, eye checks, hearing checks, pediatric assessments, or have portage come and help them.
So as good as your child maybe now you will do more than oteh parents have to
|
|
|
Post by beckasmum on Feb 15, 2006 9:52:18 GMT
I think that is utter disgraceful, there are children that are diagnosed with disabilities whether or not they are mental/physical and they can't get the help they need yet people who find it easy to say they have back probs get it handed to them on a plate.....disgraceful. They should think damn well shame on themselves. I appologise for the rant but I needed to say it.
|
|
|
Post by Rilith on Feb 15, 2006 9:52:22 GMT
I'm trying not to hold my breath. I could really do with the extra finances, we are both off work ATM, me with depression and Carl was being the stay at home parent, so pennies are a bit tight ATM.
I am dreading it, but like people have said before maybe they decline you so if you are genuine then you will appeal.
Grrrrr. I hate waiting, they moan at you for leaving it 2 days before posting it but it can take them 11 weeks to deal with it.
AAAARGGGGHHHH STRESS MONKEY!!!
|
|
|
Post by beckasmum on Feb 15, 2006 9:56:05 GMT
There are fiddlers out there that probably would have the nerve to appeal also rilith.
|
|
|
Post by Rilith on Feb 15, 2006 10:00:41 GMT
True grrrrrrrr. Does your head in doesnt it??
Everytime we see a professional Holly ends up on more medication or has an extra supplimemt of something. Stress stress stress!!! (ignore me I'm having one of those days...lol"
|
|
|
Post by beckasmum on Feb 15, 2006 10:22:08 GMT
I actually agree it gets right up my nose, genuine people with disabilities arent getting the support they need because of fraudsters basically, its all wrong like I said about those who do it they should think shame on themselves.
|
|
|
Post by Jojo on Feb 16, 2006 8:45:17 GMT
You know.....you're absolutly right Mash!!
Saying that, when I first applied, I phoned the operateor at benifits, for the forms.... 'she'...who know's nothing about how the system bloody works, was trying to put me off trying all together..(stupid cow)!!!
I think that episode is what has put me off trying too hard.
But yes Mash you have a valid point there and I will use it when I try again ( very soon)!
Hehe......I might come on here when I fill them out and we can all have an input..lol
xxx
|
|
|
Post by Daniella on Feb 16, 2006 12:18:46 GMT
my dad is on dla, he had bi-polar disorder and my mum is a carer for him.....then tony blair brought this thing in about trying 2 get people on dla working, to filter out all the people who do and dont need it, they told my dad that he didnt need 2 worry about it as they already knew he was a genuine case....but still fined him twice when he didnt go 2 an interview at the job centre.......
i think it is a farce myself, i mean, yes they need to take action against all the fakers, but surely they need to do it in a different way......
adam and i are not bothering to apply just yet as everything you have all said about what is required in the application form, josh is fine atm so we probably wouldnt get it
|
|
|
Post by Jojo on Feb 17, 2006 15:32:44 GMT
That's how I felt Daniella....but it's defo worth giving it a try. You never know!!!
|
|
|
Post by Rilith on Feb 21, 2006 12:18:55 GMT
God I hate waiting!!
|
|