nervous about dla

[sethsmummy]

deleted

 

[sam2eb]

Hope your ok

 

[sequeena]

 

[sethsmummy]

thanks ladies im good. i had just had a rant about feeling nervous. I posted off my sons DLA application on tuesday after filling it in myself and im just really nervous about whether he will be accepted or not. its got all the supporting evidence in with it and all the proffesionals involved with him have said he will get it but i dont want to get my hopes up. Im hoping to make a sensory corner for him at home if he is awarded anything.

then the post office couldnt track the letter.. i sent it next day guarunteed (£7.95!) to make sure it got there before they shut for christmas as my deadline was 26th december (been waiting on the education visitors report) and when i went online to check how it had progressed it said its been redirected. The envelope that came with his pack had a birmingham envelope but the post office couldnt tell me where its gone. i now get a thing saying its been delivered.. but no signature like there should be and no tracking information to say where its gone :S

sorry its really a pointless rant but i cant say anything to my husband about it as all he thinks about is we are going to get it with no doubts. he thinks im stupid for worrying but hes not the one for had to sit for 7 solid hours thinking of every little problem our son has when iv always just thought of him as "normal" coz hes never been any other way. xx

 

[sequeena]

Ah sweetie I know how you feel My son has just been awarded DLA but it was a nerve wracking 8 weeks I tell you. We had help from welfare rights to fill in the form so if you happen to get knocked back please ring them and they will send someone out to help you with the appeal

 

[sethsmummy]

Ah sweetie I know how you feel My son has just been awarded DLA but it was a nerve wracking 8 weeks I tell you. We had help from welfare rights to fill in the form so if you happen to get knocked back please ring them and they will send someone out to help you with the appeal

Thanks hun. I had a lady from the princess trust for carers come out and she was supposed to help me fill it in. Id spent all the night before answering all the questions in a notepad to make the process quicker... she was in my house maybe 10 minutes max before saying... you dont need my help you can do it yourself and she just told me to elaborate on my sons meltdowns and what happened at night and to put in photocopies of all reports etc. Its just like she couldnt be bothered to be honest... she was more interested in playing with my 9 month old.

its funny how nervous it makes you someone else judging your child. Im not expecting to hear anything until february at the earliest. xx

 

[essie0828]

I am in the process of claiming benefits for my DD who has CP. I'm really afraid I've probably messed things up. She has had so many different doctors, specialists, therapists and different appointments for this and that. Each visit, date, reason for going, what clinic and where......all that has to be cataloged before we go to the interview phase. I can't remember HALF that information. Ugh. I feel really lost in all this. I know she's disabled, her doctors know she's disable, and any doctor who looks at her for more than 5 min will know she's disabled. Just wish common sense governed the application process

 

[mummy2o]

Ah sweetie I know how you feel My son has just been awarded DLA but it was a nerve wracking 8 weeks I tell you. We had help from welfare rights to fill in the form so if you happen to get knocked back please ring them and they will send someone out to help you with the appeal

Thanks hun. I had a lady from the princess trust for carers come out and she was supposed to help me fill it in. Id spent all the night before answering all the questions in a notepad to make the process quicker... she was in my house maybe 10 minutes max before saying... you dont need my help you can do it yourself and she just told me to elaborate on my sons meltdowns and what happened at night and to put in photocopies of all reports etc. Its just like she couldnt be bothered to be honest... she was more interested in playing with my 9 month old.

its funny how nervous it makes you someone else judging your child. Im not expecting to hear anything until february at the earliest. xx

My sons HV did mine for me. She was a lovely lady and very good at her job. She knew something was wrong and spent many hours moaning at the gp to get him moving to refer him to specialist. I really wouldn't worry. I know they've changed the process recently so things are a bit different and you can't challenge it as well as you use to, but you are in titled to it. My only advise is don't be to greedy. I know one lady who said she wasn't getting enough for her son's autism and got middle rate care and low rate mobility so challenged it and lost the entitlement altogether. Then again she was a very greedy person and trying to make everything seem 10 times worse when her son is way better than my son most the time. I could write a list and compare the two and my son would probably be better in about two things, one being walking. But she doesn't encourages him to walk at all and allows to push him to school from the disabled car park space to his classroom. Ironically he walks around all day at school, so its not like he can't do it, more like she can't be bothered to let him do it.

 

[essie0828]

Is DLA income based or based on the needs of the child? American here I'm wondering about the differences between systems. Also, anyone know anything about the American disability benefits for children? I'm pretty clueless and I've heard of adults having to hire lawyers to get similar benefits. That's pretty intimidating considering I just winged it and answered everything honestly and as best I could.

 

[sequeena]

Yes Essie the rate of DLA you get is dependent on the needs of the child. There are 2 parts of it - care and mobility (mobility applies to children 3 and older so we cannot claim it for Thomas yet). Then there are lower, middle and higher rate care and I think mobility just has lower and higher rate. The amount you receive depends on which category the child falls into.

Just to try and help for my son's claim I sent off his Ruth Griffith report (the welfare rights woman said that honestly that was all I needed as it's so detailed but send everything you can), number and name of his plastic surgeon, his audiology report, name and number of his portage worker, note from his disabiltiy social worker and HV and I think there was more but I forget. Basically get everyone who is involved in your child's care involved. If you don't have a report from them try to get them to write a supporting letter. If that's not possible just include name and number.

Welfare rights really helped us as she kept questioning me and things I thought were irrelevant were actually really important.

 

[essie0828]

Our system is based on the parents income only. That's probably going to be the biggest deciding factor for us and that sucks. DH makes a decent wage but I am staying home to care for DD and our income has basically been cut in half. Our bills however have remained the same and this month alone we have spent over 300$ on therapy aids.

 

[sequeena]

Our system is based on the parents income only. That's probably going to be the biggest deciding factor for us and that sucks. DH makes a decent wage but I am staying home to care for DD and our income has basically been cut in half. Our bills however have remained the same and this month alone we have spent over 300$ on therapy aids.

Ouch DLA as far as I'm aware doesn't work on income but if you get other benefits it boosts those. It boosted the child tax credit we receive and even made us eligible for help with our rent which I didn't know would happen

Aliss is in Canada but recently received disability for her son she may be able to help xx

 

[essie0828]

Wow. You guys have a great support system over there. A lady told me that she gets 1$ a month in disability for her severely autistic daughter because they are considered middle class. She did say that as long as they were eligible for any disability benefits that her DD's medical care and therapy were free. That may be our best hope. And considering DD's therapy costs almost 1000$ a week, very needed.

 

[sequeena]

Wow. You guys have a great support system over there. A lady told me that she gets 1$ a month in disability for her severely autistic daughter because they are considered middle class. She did say that as long as they were eligible for any disability benefits that her DD's medical care and therapy were free. That may be our best hope. And considering DD's therapy costs almost 1000$ a week, very needed.

We are very lucky and I don't forget it. We have the NHS which may have waiting lists as long as the great wall of China but it's free (well, I think we pay through taxes but we don't pay extra). I've paid for some sensory stuff and will pay £50 for sing and sign but that's it so far.

 

[essie0828]

We're lucky DDs medical is basically free. We also pay a tax and have to see specific doctors but the wait isn't long and the care is generally great if you know the system. Lots of people over here go bankrupt for medical care. It's a sad situation.

 

[lozzy21]

I applied with help from a man at our local carers centre, I wasn't sure if she would get it and he thought we might need to appeal but I was go smacked when we got her awards letter through. I was hoping she would get the lower rate to help towards the cost of travel to appointments, it costs us nearly £50 in train and taxi fares to see her consultant.

 

[essie0828]

Lozzy travel gets costly for us as well. It's about the same for us to drive to therapy 3 days a week. We also have a costly overnight trip planned to see a CP specialist in another state. Gas, food and motel will be over 300$ easy. Thankfully DH works his tail off and we can do the things we do for DD. FX'd we can qualify for something like DLA.

 

[essie0828]

Btw lozzy my DH had JRA as a child and young adult. I've seen the injections and fluid drawn off multiple joints in his body. It's a tough disease Your little girl is a tough cookie for dealing with it.

 

[sethsmummy]

wow that really sucks that you dont get more help in America... as crap as the uk is.. im glad we have things like this (although not sure for how much longer the way things are going).

I am just hoping the get the lower rate care. hes not eligible for mobility yet as hes not 5. so anything on top of that is a bonus. I didnt even know you could claim DLA for the problems my son has as i always saw it as something for children/adults with an obvious disability. it was our education visitor who told us about it. I cant believe that woman was so greedy though.. to be honest whatever we get given is a godsend and helps immensly espcially once you factor in the top up of child tax credits (again i didnt know about this.. found out on an autism website).

Most of all out of all of this im actually looking forward to my son getting a proper diagnosis. Weve known there was something wrong from 1 when he stopped talking and started throwing himself at walls. Thankfully thats stopped now and he claps or slaps his face.. not ideal but defenitely better than going headfirst into a wall.

do any of you guys worry that any other siblings will be the same? DS2 is 9 months and im so worried hes going to end up the same.. although i guess this time it will be easier because i know what im looking for and we already have all the help for seth so getting help for him shouldnt be as hard. xx

 

[sethsmummy]

oh and with his claim i sent;

2* sogs review
2* weigh charts (to show that he has a weight problem)
1* Educational visitors learning evaluation outcome
1* minutes from co-ordinated support plan meeting
1* IEP from the nursery
1* discharge form from when he had an mri
1* referral letter for dietetic team

I was supposed to have a report from his speech therapist but she didnt bother to send me it and i couldnt wait any longer before sending it off but i did include everyones names and numbers if i knew them.

I sooo understand the trying to remember appointments thing. Im glad its only over the last year! over here they just ask who theyv seen or what tests etc they have had or are waiting to have. so it wasnt too bad for me. xx