# nervous about dla



## sethsmummy

deleted


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## sam2eb

Hope your ok


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## sequeena

:hugs:


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## 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


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## sequeena

Ah sweetie I know how you feel :hugs: 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 :hugs:


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## sethsmummy

sequeena said:


> Ah sweetie I know how you feel :hugs: 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 :hugs:

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


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## 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. :wacko: 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 :dohh:


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## mummy2o

sethsmummy said:


> sequeena said:
> 
> 
> Ah sweetie I know how you feel :hugs: 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 :hugs:
> 
> 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. xxClick to expand...

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.


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## essie0828

Is DLA income based or based on the needs of the child? American here :hi: 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.


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## 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.


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## 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 :wacko: and this month alone we have spent over 300$ on therapy aids.


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## sequeena

essie0828 said:


> 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 :wacko: 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 :wacko: 

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


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## 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.


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## sequeena

essie0828 said:


> 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.


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## 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.


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## 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.


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## 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.


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## 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 :hugs: Your little girl is a tough cookie for dealing with it.


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## 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


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## 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


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## sequeena

I'm terrified of another child having the same problems, especially a boy as it seems to run in the male side of my family so we're not going to do anything until we know what's going on with his genes.


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## lozzy21

sethsmummy said:


> 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


If they qualify for the higher rate mobility you can claim it from 3.


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## sethsmummy

lozzy21 said:


> sethsmummy said:
> 
> 
> 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
> 
> 
> If they qualify for the higher rate mobility you can claim it from 3.Click to expand...

the most my son would get would be lower rate mobility as he can walk but needs a lot of guidance and it takes us forever to get anywhere due to either him stopping and refusing to walk or him getting distracted lol. A walk that would take 5 minutes without ds1 can take upto 30 minutes with him. xx


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## lozzy21

sethsmummy said:


> lozzy21 said:
> 
> 
> 
> 
> 
> sethsmummy said:
> 
> 
> 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
> 
> 
> If they qualify for the higher rate mobility you can claim it from 3.Click to expand...
> 
> the most my son would get would be lower rate mobility as he can walk but needs a lot of guidance and it takes us forever to get anywhere due to either him stopping and refusing to walk or him getting distracted lol. A walk that would take 5 minutes without ds1 can take upto 30 minutes with him. xxClick to expand...

Not necessarily , my daughter can walk too but is unable to walk far with out pain. It goes on what level of support they need not what disability they have.


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## sequeena

Yes I agree. Thomas can walk but within minutes is asking to be picked up or put in the buggy because his joints hurt and he falls over a lot. We don't expect him to be without a buggy for a long time.


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## essie0828

So does the mobility benefit give you access to mobility aids or is it extra money to help pay for mobility aids? I think here we don't get a money benefit but if your child has mobility issues that medically required aids then the price of the equipment is covered or you will be "loaned" equipment. And you can get a parking sticker.


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## sethsmummy

hmm im sure that if a child needs a walking aid over here it should be provided by the NHS although im not sure on that one the other ladies might be able to help more. If you recieve the High rate mobility though instead of taking the money you can get a car. 

Seth doesnt get pain when walking. he just gets tired/grumpy/distracted. he cant safely walk beside a road by himself as he tries to play on the curb or if he sees something/someone he wants he just runs out. or if a loud noise startles him he runs away from it inc into the road. 

i have to say though his slow walking is going to be perfect with his brother starts walking outside :rofl: we did have a pram for seth until just before DS2 arrived and if it gets too much for him then he sits on the hood of the pram... like last week after his full day at nursery 9am-12:30pm then 1pm till 3:30pm he actually fell asleep sat on top of the pram and on a couple occasions has ended up falling asleep while walking.. although i didnt put that on his form as its only happened twice x


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## essie0828

That is great that you can get a car if needed! 

DD doesn't walk yet, she takes a few steps but we have to hold her hands and still yet she falls. Braces have helped but the weight of them and her shoes tires her out very quick. We will probably be starting her off in a k walker soon, it will cost us $1500 if we can't get a loaner :wacko:


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## sethsmummy

oh my gosh thats such a huge amount! Do you have any relatives that might help you out hun? or is there anywhere that sells second hand ones in great condition? xx


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## AP

sethsmummy in your situation its very hit or miss, and depends on who is looking at the forms. I know someone whos child needs a lot less support mobility wise than our Alex outdoors , yet she gets HRM and we dont. :shrug: Bloody luck of the draw and i cant be assed appealing


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## essie0828

sethsmummy said:


> oh my gosh thats such a huge amount! Do you have any relatives that might help you out hun? or is there anywhere that sells second hand ones in great condition? xx

We get a lot of support from my mom and DH works his butt off. The early intervention programs have a network they use to help us get used equipment or rentals as the little guys grow out of things so fast. Also if it's considered Durable Medical Equipment we may be able to get a prescription for one through the Orthopedic docs but that's not always an option depending on the insurance you have.


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## lozzy21

The mobility element is extra to any aids they need. If they need a wheelchair they would be given one for free with no affect on their benefits.


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## sethsmummy

Atomic: I cant believe how much it can vary... their should be a set criteria to meet but then again i suppose they cant do that as every single case will be different. 

Im basing my thoughts on what ds1 will get due to another child who attends the same nursery as him. I have talked to his mum quite a lot and he can talk/is toilet trained/ sleeps through the night and doesnt need as much support as ds1 and he gets higher rate care and low rate mobility. So on that im hoping well get at least low rate care. Were hoping to be able to afford to run a little car.. which will be seriously helpfulll aspecially during winter as ds1 is scared of severe rain or wind and it knocks him over with him being so small. 

essie: im glad that there is help out there. I think thats the only bad thing about america is the whole medical situation. Its disgusting that some people cant get the help they need because they cant afford it :( makes me very sad. 

are you girls all ready for christmas?? HAPPY CHRISTMAS EVE!!


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## sam2eb

I'm Suprised that they would recieve high rate care, I thought that the criteria for that included help through the night.

Anyway your son sounds like mine and we were awarded dla without having to appeal. No mobility element tho x


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## sethsmummy

thanks sam thats good to know. my son still wakes every night. he either falls out of bed/had bad dreams or something spooks him. last night id left his cupboard door open a bit and it scared the living daylights out of him when he woke up bless him. always got to have our cuddles and his hot chocolate and if theres no hot chocolate then its up time for me lol x


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## lozzy21

Really don't base it on some one else's. Niamh developmentally is ahead of where she should be but gets the higher rate care. As I said its not what they can do its how much you have to do for them. Niamh is toilet trained but is unable to get up and down herself. First thing in the morning or on a really bad day we have to carry her to the toilet so she would fit the same criteria as some one needing a nappy change.


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## essie0828

sethsmummy said:


> Atomic: I cant believe how much it can vary... their should be a set criteria to meet but then again i suppose they cant do that as every single case will be different.
> 
> Im basing my thoughts on what ds1 will get due to another child who attends the same nursery as him. I have talked to his mum quite a lot and he can talk/is toilet trained/ sleeps through the night and doesnt need as much support as ds1 and he gets higher rate care and low rate mobility. So on that im hoping well get at least low rate care. Were hoping to be able to afford to run a little car.. which will be seriously helpfulll aspecially during winter as ds1 is scared of severe rain or wind and it knocks him over with him being so small.
> 
> essie: im glad that there is help out there. I think thats the only bad thing about america is the whole medical situation. Its disgusting that some people cant get the help they need because they cant afford it :( makes me very sad.
> 
> are you girls all ready for christmas?? HAPPY CHRISTMAS EVE!!

The healthcare situation over here can be pretty crazy. FX'd things are changing for the better soon.


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## sethsmummy

lozzy21 said:


> Really don't base it on some one else's. Niamh developmentally is ahead of where she should be but gets the higher rate care. As I said its not what they can do its how much you have to do for them. Niamh is toilet trained but is unable to get up and down herself. First thing in the morning or on a really bad day we have to carry her to the toilet so she would fit the same criteria as some one needing a nappy change.

awww poor niamh.. that must be really hard to watch her go through hun :( 

fingers crossed essie... iv seen theres a lot of different views to the whole obama care etc at the moment.

did everyone have a good christmas? xx


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## sequeena

Lovely thanks, though Thomas has still not been right in himself.


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## sethsmummy

aww fingers crossed hes more himself soon hun. its not nice when theyr just not right. 

seth wasnt really interested again this year. he ripped into his presents.. didnt even get all the paper off before he was onto the next one. not one smile or anything.. for 6 presents in and then opened his hotwheels cars and that got a WWOOWWW ... then he went off to play with them with the rest of his cars. lol x


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## sethsmummy

just wanted you ladies to know that I got the news today that seth was awarded higher rate care :D I am so amazed! and it was waaay faster than i thought too. xx


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## sequeena

That's great news!


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## sethsmummy

sequeena said:


> That's great news!

thanks hun :D i still cant believe it! xx


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## sam2eb

Brilliant news :)


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## mummy2o

That's great news! I'm so happy for you.


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## essie0828

Awesome news Sethsmum :happydance: 

We completed our interview, now our application goes to the state for thorough review. It takes up to 120 days to review. :dohh: But good news is that they took in account our bills and deducted them from DH's income and used that amount to put on our application. He said weirder things have happened but he didn't see any reason she wouldn't get it.


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## sethsmummy

thats fab hun! Fingers crossed you get it! would be a weight off your mind! xx


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