Waiting time for DLA Third Thread

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.

[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 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 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 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.

@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.

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 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 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

[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.

@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.

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.

Hi I am a new user too! This is just beyond a joke, I am making a new claim for DLA for DS and my application was received on the 8th.oct.21, last week I was told they were working on applications up to the 5th of October and to phone back on Thursday 16th Dec. and HOPEFULLY a decision MAYBE made. My son is 4 yrs and is diagnosed with ASD, sensory processing disorder , non verbal, hearing impairment and has zero danger awareness, he sleeps for 4 hours a night and because of this needs round the clock supervision. Waiting for this DLA is now consuming my life as living on basic benefits and not being able to work due to full time caring on my own for my DS is hard going, one of the hardest and most challenging things I have ever done . DLA for children should be prioritised . I have so much compassion for everyone of us in this situation . It it is really cruel to leave parents that are already going threw hardship for such a long time with the uncertainty and delaying possible other entitlements due to the rate on decision. Appeals waiting times are ridicules, I am up in Scotland and as of 22nd of Nov social security Scotland are taking in applications for children, I know that because of this and swapping over old claims to SS Scotland has put a strain on DLA as i was told that on the 3rd of Dec when I phoned with regards to my claim. The whole process is an utter joke to me at this point. I keep getting told it will be worth it when or If i get a back payment but thats not helping to put food on the table and toys under the xmas tree at present. Sorry for the rant but at this point I am totally peeved off with this waiting.

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

Nothing. Nada. No change. No decision. Same excuses.

@Princess23 decision maker gave me my letter on the 16th November I got my payment on the 29th November was a same day payment sent to me x

Hi can anyone tell me on uc when decision maker as awarded the backdated payment how long after is it that u receive the money please just cant seem to get any further on with them thanks

@Lifey it really is!

@Auntpollyhadadolly I was told if I did recieve a text, I could call to find out rates 🤷‍♀️

I wish you the best of luck! It isn’t fair how long they are taking with your application, the anticipation must be stressing you out so much 😞

So we got a text this morning saying my son has been granted DLA, they say not to call and expect a letter in 2 weeks. Why dont they tell you what has been awarded HRC MRC etc of course I'm going to call to find out.
Our forms were received on the 2nd of October if this helps anyone at all.

@Lifey yup, 29th Sept! I did mention that I knew they were working on applications up to two weeks after ours, but was fobbed off. So I may mention it again.

Thank you! It’s just a big sense of relief, I hope you get this feeling soon too! Definitely call on Monday and give them a piece of your mind, I remember asking to know how they ensure a fair application process and explained how i seen on a forum that some applications had been dealt with which were received later than mine @DeludedWench I would definitely suggest that you mention this when you call to! I’ve been following your progress and this is so unfair! Your application was received on 29/09 right?

So it will be 11 weeks Weds. We had a case worker go on leave and awaiting to be assigned a new one (which I'm hoping has been done at this point). When I asked to speak with someone personally dealing with my sons claim I was told "the case manager has been messaged, they have contacted the highest point for you, you can't speak to anyone". I was also told it is taking 9 1/2 weeks JUST to get to a case worker. But I know our claim was sitting on ones desk for at least 4 days while they were on leave.

I will be ring them Monday, midday to give them another half day to work it out (not sure if anyone works the weekend). I need POLITE tips on how to get things moving. How do I get to talk with the case worker? How to get it moving again? I'm not one to moan, but this is stressful now, especially knowing they are working on cases 2 weeks after ours. Tried saying that even when a case worker is assigned, ours may not be looked at straight away as more urgent cases may be ahead of ours? I would have thought the "special circumstances" cases would go into a whole different department so they wouldn't get lost amongst ours...

Sorry, as you can see it's affecting my sleep now as I'm trying to figure out ways to find out where we stand with these people and if I'm needing to summon the energy for a MR...

😑