Waiting time for DLA Third Thread

[Mummy2boys1520]

Hi the Second thread ended because when it reaches a 1000 comments it will close I thought I would set this up so everyone can talk again

They called me back and my current case worker has taken my case to a mentor for advice and it may go to medical (inside docs and what not) if the mentor can't help.

It's taking a little longer because our Son has a rare disability with a few bits going on, so they are trying to get as much info as they can about it.

@mum42boys82 Agree! It's so stressful. I have lost sleep over this. The fact that the fate of our finances is in someone else's hands is worrying. I just hope it's sorted this week, without any inclination of which way their decision may go just ramps up my anxiety.

[quote DeludedWench]@mum42boys82 Agree! It's so stressful. I have lost sleep over this. The fact that the fate of our finances is in someone else's hands is worrying. I just hope it's sorted this week, without any inclination of which way their decision may go just ramps up my anxiety.[/quote]
when I read your journey last night, it really hit home to how unfair and unorganised this system is. This is real anxiety, as we don't know our fate ,what rate or even if we will be accepted. I read so many conflicting stories, some people with similar conditions have received high rate or middle then some people have been refused. It makes no sense . I really do feel so angry that you have had to wait since the 29th sept, its nearly 12 weeks. You would think with a rare disability that a decision would be made quicker. I just got through and was told I should phone on Friday (10 weeks since received) but not to get my hopes up as they are overloaded and its been the longest waiting times since covid. She then said that her calls today have been with people on the 10th week. I did point out that online and on the letter it states up to 40 working day waiting time and not over . Its false and misleading and totally sick of being fobbed off with all sorts of rubbish and excuses. She then said its between 9-11 week waiting time from application. I hope you get an answer soon , its just not fair.

Hi All sorry your still waiting, thought I'd give a call b4 the school run the advisor told me they are working on forms dated 12/10
@DeludedWench
Please hang on in there, my anxiety has been through the roof the pain I'm feeling is awful so I hear you. My daughter also has a rare illness (Systemic juvenile idiopathic Arthritis)so I fully understand how anxious you feel as I don't know of anyone who has been award dla with this condition let alone the fact its so rare to have it at her young age (spent 5 weeks I hospital) let's hope the DMS can find it in their hearts how any disability can rip apart a family mentally, emotionally, physically and financially.. keep calling give your local mp a call at least if anything it raises awareness of this unfair allocation with claims

@Adamd12

Hi, new user, I did a reconsideration application because we believe my son should be on higher rate care not middle that he’s on now. Anyway they received the form on 15th October, I decided to ring today and was told it is taking 16 weeks, has anyone else had this, or is it taking longer cos it’s not an urgent case? Just interested really

Thanks

I would phone them back and ask if its 16 weeks from claim application received or 16 weeks from the reconsideration application received, that seems a really long time , that's like nearly half a year in total for them to make a proper decision from start of claim to reconsideration , the waiting times are scandalous, for a child that deserves high rate care, a decision should be made faster. I did have a look at appealing decisions, as I was advised that they can be quite ruthless depending on the decision maker and I noticed it said 12 weeks . A lady told me today that this has been the longest waiting times since covid people have had to wait for a decision to be made.

@LovingLanz5

Hi All sorry your still waiting, thought I'd give a call b4 the school run the advisor told me they are working on forms dated 12/10 *@DeludedWench* Please hang on in there, my anxiety has been through the roof the pain I'm feeling is awful so I hear you. My daughter also has a rare illness (Systemic juvenile idiopathic Arthritis)so I fully understand how anxious you feel as I don't know of anyone who has been award dla with this condition let alone the fact its so rare to have it at her young age (spent 5 weeks I hospital) let's hope the DMS can find it in their hearts how any disability can rip apart a family mentally, emotionally, physically and financially.. keep calling give your local mp a call at least if anything it raises awareness of this unfair allocation with claims

I phoned just over a couple of hour ago , my application which was received on the 8/10 isn't even allocated to a decision maker and that will be 10 weeks on Friday, they told me I could phone back on Friday for an update. I got told last week they were going to be dealing with claims up to the 5/10 and mine should be next week as it was up to the 12/10 commencing this week supposedly but I don't hold out much hope as the lady reckoned I would hear by next week as they were very busy and were only on claims dated 6/10 as of today, i have a lot of evidence from HV, GP paediatrician and SALT, audiology (ENT) and nursery but I am still anxious as I have been told it depends on your decision maker . Everyone is being told conflicting stories about waiting times, life for parents with disability is hard enough.

I do know of a family with a young boy maybe around 10 years of age with a type of Arthritis ( I am not too sure on the specific type sorry) they were reward HRC with HRM if that helps , his mum said it was rare and they waited a little bit extra for a decision to be made for some reason but they got the highest rate.The mum was at a sensory class with her other little boy and she was making a claim for her little one with ASD symptoms and gave me the advice and told me that I should apply for DLA for my wee one. I wish I had done it sooner but with covid and waiting on appointments as I wanted to have as much evidence as I could.

Hi thanks for the reply, it just seems a bit odd, our form was recieved on 15/10, I’ve seen people on here say their dealing with claims sent upto the 12/10 this week so seems strange that they are saying 16 weeks for mine, I’ll have to ring them back and see if it’s taking longer cos it’s a reconsideration and no a new claim, that’s all I can think of

@mum42boys82 our wee boys main diagnosis is Sacral Agenesis, he is missing the bottom of his spine, which in turn he has leg deformities, they bend differently and are short. It effects his bladder, bowels and kidneys. He will lose bladder control and his left kidney is multi-cystic dysplastic and has shrivelled to nothing due to no function. Because his near constant urinating, he is prone to skin infections that have put him in hospital, so we have to constantly keep him dry.

He currently uses a walker, bit still needs a lot of help using it, so we are getting a wheelchair fitted in Jan, which I am ecstatic about, him getting more independence. But I hope to get HRM for him, so we can get into the motability scheme to get a vehicle suitable for his equipment. So it feels a lot is riding on this, which puts my anxiety up further.

@mum42boys82 but from what you are saying, I guess it's normal for them to take longer for research when something rare comes up. I can deal with that as a thought, because it means they are not just dismissing it and are (hopefully) making the best decision. And it would be an excellent outcome if he got the high rate lol.

@Adamd12

Hi thanks for the reply, it just seems a bit odd, our form was recieved on 15/10, I’ve seen people on here say their dealing with claims sent upto the 12/10 this week so seems strange that they are saying 16 weeks for mine, I’ll have to ring them back and see if it’s taking longer cos it’s a reconsideration and no a new claim, that’s all I can think of

I was told that today it was up to the 12/10 but I am not sure if that's for new claims or the reconsideration applications. Mine was a new claim dated the 8/10 but I got told probably next week as they were really busy but if they don't think they can reach the 8/10 by Friday then they are getting further behind. The lady also informed me that they are only open to Xmas eve and the lines will be shut through most of the holidays and most will be off on leave which will be a nightmare for a back log of claims ect. I was first told 6 weeks from my date that it was more likely be the beginning of the 9th week then 9th-11th week now 10th-11th , they keep moving the goal posts. I would defo phone coz if you waited all the weeks for a decision then to be hit with the wrong decision , its a really long time . I was naive to think that getting it in for the first week of October that it would be sorted well before Xmas.

[quote DeludedWench]@mum42boys82 but from what you are saying, I guess it's normal for them to take longer for research when something rare comes up. I can deal with that as a thought, because it means they are not just dismissing it and are (hopefully) making the best decision. And it would be an excellent outcome if he got the high rate lol.[/quote]
You really are going through it, what a brave little guy you have and I cant imagine the stress you are going through as well as this. I get the impression if its rare they seem to be longer in decisions which I personally think is wrong as if I was decision maker and i read your case, all the conditions , hospital stays and mobility factors I would have stamped 'high rate everything ' straight away as physical conditions and when organs are affected to me , your case and everyone who has rare condition like this , claims should be prioritised as its so obvious that hearing your little boys story, he should be awarded the high rate on both. That's the frustration, this payment could help and provide children with disability , special equipment and help families progress . If you get HRC and HRM there is extra child tax credits , cares allowance and up in Scotland you can receive a payment to help fund winter fuel for your child on disability so the decision that they are taking so long to make is stalling families and causing so much tension and anxiety as their decision could open up a whole host of things that each of these children deserve to have make life a lot more easier .

@mum42boys82 he is ever so brave and has faced so many challenges and defeated them. The whole system needs to work better. A lot of parents have to provide more care and either cut work hours or quit jobs altogether. And it's usually not a situation that will get easier, it generally gets harder. Especially recently with everything increasing, It is just so stressful. Financially. I am getting into a rhythm for his care needs, I just wish I could take the financial worry out.

[quote DeludedWench]@mum42boys82 he is ever so brave and has faced so many challenges and defeated them. The whole system needs to work better. A lot of parents have to provide more care and either cut work hours or quit jobs altogether. And it's usually not a situation that will get easier, it generally gets harder. Especially recently with everything increasing, It is just so stressful. Financially. I am getting into a rhythm for his care needs, I just wish I could take the financial worry out.[/quote]
its defiantly financially for me, the care aspect its what we have been doing since day one , I have always worked but as soon as I had my wee boy, I knew something was different , his behaviour was something I hadn't experienced before , since he was 9 months old he only sleeps between 4-5 hours in total (at best)- the other day he was able to stay awake for a total of 21 hours. His danger awareness is zero and I need to be on high alert to stop him hurting his self or others . he has destroyed a good bit of our home ,last week I went to the toilet and i heard clash and bangs and I came running into the livingroom and he was ripping apart my vertical blinds- I mean ribbing them to shreds, out of 24 blinds i had 11 left, there's no extra money to replace essential things, if my back is turned for two minutes all hell brakes loose, he doesn't talk , he just makes noises and needs me to feed him by spoon, wash him ect. Doctors keep suggesting all this sensory equipment and equipment for his allergies, sleep aids that the NHS don't supply but its a fortune and when you are on your own and cant work because of the care aspect, their is no spare cash to save for anything.

mum42boys82 have you applied for any charity grants? They can help with sensory toys and equipment. Have you had a home visit assessment by an OT.

@Imitatingdory

mum42boys82 have you applied for any charity grants? They can help with sensory toys and equipment. Have you had a home visit assessment by an OT.

I have applied for the family fund for sensory toys but the aids the doctor recommended for his sleep one is well over £100 and the other is £40 which is totally out my budget. The OT therapy could be up to 6-9 months waiting list for my area, he is on a list but I wanted to use his DLA to have a private assessment to get it done faster . He sees the paediatrician, SALT, audiology, ENT and has been assessed by a child psychologist. To be honest I just want to know that I have a steady income for my little boy so I have the freedom to buy him what he needs from where I want to, we have relayed on vouchers and hand outs for 4 months now and I have had enough . The money that is coming in right now is not enough to get by on and support a child that has additional support needs.

Have a look at some other charities as well. Caudwell children, Newlife and Variety help with sensory toys, but there are others too. The first two also help with equipment, as can Children Today and several other charities.

@Imitatingdory

Have a look at some other charities as well. Caudwell children, Newlife and Variety help with sensory toys, but there are others too. The first two also help with equipment, as can Children Today and several other charities.

thanks very much, i will check them out.

@Jneill2021 hi, do you know how long it takes universal credit to get back to you? I was awarded Friday and left a message on my journal reporting the changes

@Lifey hiya mine took just over a week for back payment and amending my statements they was really quick in my case, I did message everyday for an update as I do no other people that waited around 3 months so I would be really persistent in messaging them xx

Hi, Dla received mine on October 21st but I'm am posting them more information today does anyone know if this will hold back my application or speed it up. The waiting times are dreadful

@Moonlightstar
Hiya when i called yesterday they was working on forms dated 12th October. I would send it off special delivery as it will arrive next day.

That’s great! How did you message them ? Through your journal? I added a message on Friday and no one has got back to me yet xx

Also did you get backdated the carers element and the disabled child element xx

@Lifey i already recieve the career element as i have been down as a career for my daughter who also recieves dla but i am pretty certain you get that bacldated, yes my disabled child element was back dated you have to tell them you want it back dated or i dont thibk they mention it make sure you tell them you want it back dated to the date that dla have rewarded from, if you still aint heard from them dont be shy to message them a few times a day i did and like i said i told them on a thursday and by friday the week after i had my back payment same day issued and my statments amended xx

@Lifey all through my journal as when i rang they said i jave to go through the journal xx