Dla wait time part 2 2022

[Ltb17]

Set new one up as old thread ended @April202 @Nicky80catri @Leaf1216 can't remember any other names

DS2 gets MRC/LRM and doesn’t require much support at school beyond a toilet pass, time out pass, pass to allow him to jump the lunch queue (although he actually takes a packed lunch) and an individual healthcare plan. But a lot of effort goes into keeping it that way with treatments at home.

@Mamto2boys yes it must be tough and very frustrating at times!. There almost needs to be 4 tiers for care rates. Because although my daughter needs constant care in regards to her having no intelligible speech, mobility and learning issues, she doesn’t need as much care as my friends son who is fed through a tube and is on oxygen and has no use of his legs.
it must be hard for the decision makers to decipher between a child who can follow rules at school and understand (somewhat) and is able to attend mainstream the same level of award as a child who is completely physically and mentally disabled. i think this is why I haven’t bothered to appeal before because I’ve always felt bad for my friend who’s son will never laugh or enjoy life the way my daughter can.
for me DLA allows me to work part time when she’s at school and makes up for the fact she cannot go into childcare and therefore I cannot work full time and I think this is what it boils down to. Can the parent work, can they work part time, is the child able to go to a childminder, after school club. Because let’s face it, it’s not just about paying for therapy etc. middle to high rate allows us certain other benefits that then dictate Whether we have to work full or part time or not at all.

There's a whole spectrum of needs which fall into the remit of DLA. I think it's too blunt a tool to link care to physical disabilities, which is why the requirements aren't just linked to that.

My son might mask at school, but it means he can't deal with life outside of school very well, as he's exhausted from masking. So we get persistent meltdowns (often violent against all of us; I'm covered in bruises) when he's not in school. He hurts himself as well. He also needs reminding to drink, as well as brushing his teeth / getting in the bath. We spend hours getting him to stop what he's doing / obsessing over to get him to get dressed / washed / out the door to school. We live walking on eggshells due to attempting not to trigger meltdowns.

The care needs may be different, but they're constant when he's with us.

Also, he has a very restricted diet. If we get DLA, it'll help pay for the few - mainly expensive - foods he will eat.

@NoWordForFluffy I can 100% relate to this so much, situation sounds very similar to my own, all of what you've just described is exactly my child also. He has a ASD diagnoses but they're now looking at genetic testing to see if he has the same rare chromosome disorder that's already within our family, his behaviours aren't always "linked" to ASD, in the sense that some behaviours he has (not just the violent tendencies and stuff but other behaviours that hinder his life) are linked more to this chromosome disorder but just waiting for Leeds genetics to accept the referral.. as sometimes they do get diagnosed wrong, as my sister with this rare chromosome disorder was misdiagnosed for years of her life before doing genetic testing. Not saying my son or anyone's child has a misdiagnoses but stating it does happen, the genetic testing is to be sure he has the right diagnosis.

Exactly @NoWordForFluffy, just because a child masks at school and explodes or shuts down at home doesn’t mean their needs are any less. Quite the opposite, it is a sign of unmet needs at school and if they received more support at school home life would be easier. DLA is about more the physical needs.

Yes, @Legofigure. It's only now that we have the formal diagnosis that DS' school is taking it seriously and has put a support plan into place for him. In the hope it leads to fewer meltdowns at home. When he was diagnosed, the woman who diagnosed him asked how a diagnosis would help, and we said that we needed it to get him the support at school, as they weren't being amazingly helpful before.

@Mamto2boys, that's really interesting. I think there are often co-morbidities with many diagnoses. My inlaws are paying for DS to have a dyspraxia assessment as well, as he struggles with his writing, and ASD / dyspraxia can often be found together. I hope you get the answers you need.

@NoWordForFluffy my son too potentially has dyspraxia as I myself already have it and know all the signs for it, preschool and school have backed me up on this and still awaiting to get him formally diagnosed regarding it. So many similarities with our children!

Do you also spend a small fortune on bloody Lego?! It really helps to keep DS calm, so we end up buying loads of it (I'm adept in searching for the lowest price / second hand retired sets!).

@NoWordForFluffy yes! He has hundreds of pounds worth of lego. And minecraft is another favourite as it's building etc so everything in this house is little tiny blocks!

Hiya has anyone had a text over the bank holiday x

Ditto! 😁🤣

Hiya
joining in here although our form was received 6th May so I think we have a very long wait ahead.
We requested a paper form but I can’t remember what the difference is to filling one in online does anybody know?

Paper form payment is backdated to the date you rang for it (as long as it's back within 6 weeks). Online form payment is dated from the date they get it.

Thank you :)

I received text yesterday for scan date 24th of March xx

Did anyone else not receive a text and just a letter for receipt of their application? I'm hoping that's also the case now and the money will magically appear in my bank over the weekend and then the letter will follow. I'm dreading having to appeal, my daughter is too unwell physically and mentally to even go to school surely it won't come to that.

@Nicky80catri I've heard nothing yet, starting to think it's a no for us

@Ltb17 don't think that we have the same scan date. I phoned last week and was told it would be another two weeks before it was even looked at. I will phone Monday and see where they are at

@Sodie I'm 23rd march, called on Wednesday was told 2 weeks but so many people after me been done so I have a bad feeling lol

@Sodie your daughter will definitely be accepted. There is no way she can go to school and I don’t know your working situation but it sounds like she needs a full time carer as well. The money is absolutely needed in your situation.
i never received any letters or txts either but mine is in the overtime pile to be done this weekend.

@Ltb17 who after the 23rd march has been done already? I’ve only heard of renewals being done quicker?

@Sarah3587 someone posted just a little while ago saying theirs had been done from 24th march and I've seen loads on the dla Facebook page too

@Ltb17 I am starting to think the same Hun. Scan date 18th march. Heard nothing ,x

Are the phone lines open tomorrow? Oh my goodness this is as bad as being pregnant and waiting to go into labour.
@Sarah3587 I don't work, I'm a sahm which is bloody lucky because I would have had no option but to give up had I worked. As it stood my mother had to retire three months early when she my daughter got unwell. My husband missed three months work for both jobs. We got behind with everything. We desperately need an electric wheelchair. She has two manual but she can't self propel and for any quality of life going forward an electric will make a bloody difference for me. Especially where we live

@sodie no they aren't open unfortunately. Dms are working overtime but that's it. I don't think you have too much to worry about, if your daughter doesn't get awarded there is something very wrong with the system. Hope you hear soon