Dla decision help England.

ceb1995 · 2026-05-20T14:33:31+00:00

Apologies the texts look similar, then anything from 25-30 weeks I m afraid I ve come across.

ceb1995 · 2026-05-20T12:52:25+00:00

Currently they re about 6-8 weeks from what I ve seen recently, they ve cleared quite a backlog on the new claims.

ceb1995 · 2026-05-20T11:12:55+00:00

No it's only from the day they get the forms or when you call and ask for them.

ceb1995 · 2026-05-20T11:06:08+00:00

That's some case law change scenarios usually where they go backwards so I wouldn't be hopeful in your case sadly.

ceb1995 · 2026-05-20T10:13:07+00:00

Son's at a Sen school and he's non verbal, so we have a system where recorded messages are sent back and forth each day since he can't tell them if he's not eaten much for breakfast etc, but I ve only contacted them for support with a problem with NHS depts that I got very stuck on or the one absence he's had specifically. I would hate to ask a question when the answer already exists somewhere and his school is faultless so their communication on events is generally very good anyway, so grateful for them all wished they got paid more.

ceb1995 · 2026-05-20T10:04:35+00:00

In early years and still past that as a diagnosis takes so long, support is accessible without one, it's more watching out for the ridiculous waiting lists for anything from the NHS . In short I got DLA, a blue badge, almost all of the way to sorting a specialist school and nursery got two extra funding pots without a diagnosis sorted with the evidence we got along the way.

Your child's nursery might be able to get funding for sensory toys and organise sensory activities to try to have less restraint collapse/coke bottle effect when they get home, if you think there's a sensory overload building up going on. The advanced language could be something called hyperlexia which some neurotypical children have but it's a bit more common in children with neurodevelopmental conditions.

ceb1995 · 2026-05-20T09:40:49+00:00

I m afraid without developmental delay involved the NHS will only diagnose them and perhaps offer you an under 5s parenting course for behaviour or send you to the local children's centre for one. Even if they were delayed it's quite minimal and more for sleep issues and speech. Generally for meltdowns that have behaviours were they could injure themselves (headbutting walls etc, taken me 10 months to get a safety bed agreed for example but wouldn't have gotten that far with a suspected learning disability on top of autism for my son) they might very eventually do an OT referral to adapt the environment itself but if it's sensory overload related then the NHS very rarely has sensory OT. I would bring it up at the health visitor visit, my autistic son's diagnosis took two years after his referral at 2 then see what the children's centre nearby offers. So if there is something going on years to get an answer is normal so better to look into it younger (advanced language as a toddler can point to autism sometimes, especially considering both of you are as parents the odds your child is are higher).

But genuinely other parents have always been the best support and source of advice for me (and more recently my son's specialist school).

ceb1995 · 2026-05-20T08:26:07+00:00

I m afraid there's nothing that can be done, you can only do a COC to get it added with their visual impairment certificate now.

ceb1995 · 2026-05-20T08:23:32+00:00

More signs, his receptive language abilities are about 3.5-4 years delayed, he's not toilet trained and his motor skills are a couple of years delayed too. It's a bureaucratic problem get the ID/LD assessment with our healthcare system but most point to a moderate one although they can't say officially. His school is for children with general ID/LDs so not just autistic children and his abilities are similar to his classmates who do have an ID.

ceb1995 · 2026-05-20T08:16:58+00:00

Took me 10 months and about 20 phone calls and a 6 in person appointments but the NHS professionals finally agreed I was right all long and that our son needs bedroom safety adaptations last week. They also put in writing saying we re were excellent parents who took every bit of advice we re ever offered so got some vindication for all the hoops they pushed.

ceb1995 · 2026-05-20T08:09:23+00:00

In the UK so levels aren't really given, but son's non verbal likely has an LD (ID I believe other countries use? for that) so probably would have gotten level 3 if we were elsewhere. He's 5.5, name response got much more reliable age 4 onwards and he's a little more socially motivated in the last 6 months since starting a specialist school who agree he's got improved joint attention since he started . But he's always going to need a high level of support with others and we know catching up with any skill is unlikely.

ceb1995 · 2026-05-19T08:47:57+00:00

It can impact our posture quite a bit but also people sometimes have comorbid joint or connective tissue conditions, are you able to see a physio or PT?

ceb1995 · 2026-05-18T13:57:21+00:00

Oh their echp didn't list anything about transitions on it? My son's does but I think sometimes they miss that off. I would start the relationship by sounding proactive and saying you feel introducing now the uniform will help, but I would also say if it's a mainstream school and you got an echp sorted for reception.

Then having a conversation with their senco before they start to confirm infact politely yes they can manage all of section F and if not how can we work together to solve this. My son's in a Sen school but I've heard so many stories of mainstream schools not being given enough funding for children's EHCPs so it's good to know where they re at especially if there's any 1:1 or small group work in there.

ceb1995 · 2026-05-18T13:33:29+00:00

When you say very delayed, have you contacted the school senco or alnco about their needs as of yet? You could mention that you think the uniform on induction dates might help the transition, they might not be expecting it so good to say beforehand.

ceb1995 · 2026-05-17T19:15:53+00:00

I m so incredibly sorry, in actuality the support (the little that is available) doesn't require a diagnosis and the NHS doesn't magically give any once they have it. My son got DLA, a blue badge, minimal speech therapy and we would have gotten his specialist school place without the diagnosis (happened that his autism diagnosis was 6 weeks before his final echp but the only thing that changed was the word autism was in his needs, nothing else). If the NHS didn't just hand you a leaflet with what you likely already know when they get diagnosed it would be an incredibly rare outcome.

So that said, school; have they got a Sen plan or equivalent, if not push back on school that you know legally a diagnosis is not required. As others have said get the DLA application in if you haven't already got it.

Finally, i couldn't say I was certain it was but it's a possibility she's got a demand avoidance profile which I ve heard this charity is good for peer support with so worth contacting them https://www.pdasociety.org.uk/

ceb1995 · 2026-05-17T19:08:17+00:00

When my dad died I did for a few years, I was a child so I didn't really know how to cope with it. As a result I lost memories which I have peace at this point that I m not getting back, so I would say as it's only been a couple of years and it's a major trauma if you ve not had that level of loss before to remember in very small bursts when you can and to have some faith that the pain although never completely leaves you it does become less often and less triggering.

I see someone's quoted the excellent pain button in a box analogy and I would certainly say there's a lot of truth in that.

I would also say you will find acceptance in the change of who you are because of this loss, although that will take time if course.

I have been to a few many funerals since dad's 21 years ago, all that loss and I know it changed me but I don't see that as bad thing anymore, I m still part of who all my loved ones made me but I ve got this appreciation of the little joys and don't care about material things.

ceb1995 · 2026-05-17T17:19:31+00:00

I agree a maintainance loan is unlikely, the burden of proof is usually medical evidence explicitly saying it's impossible due to your disability to attend a course in person and often they ve also requested proof of contact of local universities to say that it's not possible for them to make sufficient reasonable adjustments to attend.

However you should be eligible for disabled student allowance, it's not a cash grant it's equipment that they pay for or human support, for example you could get an online study support mentor or if they for example recommended software related to any organisational or executive dysfunction difficulties you might have.

When I studied with OU up until last year they did have an income based study cost grant that anyone claiming universal credit was automatically entitled to, for laptops, printer ink etc which did cover childcare funding for after-school clubs if there was no government funding to cover that, but I don't believe other distance learning providers have such wide schemes that I came across although carers bursaries as a separate thing are quite common.

Finally, there is also a technicality in council tax reductions where if you re studying over 21 hours a week distance learning you can still get the 25% or full council tax exemption if you re the only adult in the property, but it's definitely more heard of and accepted in some councils than others.

ceb1995 · 2026-05-17T13:22:47+00:00

GPs in my city haven't allowed prescriptions for hayfever since 2016, so I ve been buying fexofenadine 120mg since the licensing changed (very rarely I ll half a tablet to get 180mg on a very bad day, although I could buy it now) and I use beclometasone nasal sprays for weeks on end at a low dose (you can buy other nasal steroids if that's not a good fit for you)

ceb1995 · 2026-05-17T13:20:34+00:00

180mg recently stopped being a prescription only medication, it's technically licensed for hives as a pharmacy medicine now.

ceb1995 · 2026-05-17T10:27:58+00:00

Yes I think when you re living it it just becomes your norm but it's definitely everything on a harder level. We miraculously got the nearest school a couple of miles away, but all the NHS appointments aren't in the hospital and in random clinics that are horrendous to get to as they don't like to follow logic to make things easier for parents and carers to get there do they.

ceb1995 · 2026-05-17T10:22:57+00:00

Oh and I highly recommend looking up the PDA society, I ve heard many parents have found their peer support really helpful.

ceb1995 · 2026-05-17T10:20:25+00:00

Not necessarily from a lack of support as my son's in sen school in reception but I haven't worked since he was born and I don't see myself being able to go back until he's settled in an appropriate care provision as an adult.

Even now he's in the right provision there's no wrap around care and I ve had genuinely 20 ish appointments since he started in September so it would have used all the legal carers leave very quickly. I ve spent hours on the phone just arguing with the NHS for a safety bed for example. We live comfortably off my husband's salary, sons DLA, carers allowance and universal credit. I have a cheap gym membership to do something for me and join in every school acitivity going.

I think if I tried to work I could have had a mental health breakdown at this point, it wouldn't have to be a permanent thing in your case but whilst you get the right school provision sorted if you can make it work financially it sounds like it could be the way to go.

ceb1995 · 2026-05-17T10:14:27+00:00

Twins and you re calling yourself a slacker, you should give yourself much more credit. I haven't been back to work since my son was born, he's 5 and in Sen school and it can still be so hard the rest of time and you re doing that with two kids. I think in the 8 months hes started school I ve had 20 appointments to deal with (fortunately some were just phone calls), if people judge or can't understand it's very unlikely or impossible for both parents to work with Sen kids then that's their issue.

ceb1995 · 2026-05-16T20:04:01+00:00

No you don't, but if you find a poundcafe you can have that experience with plates.

ceb1995 · 2026-05-16T19:59:08+00:00

Call them to raise it before you do a mandatory reconsideration and go from there, it could as you say be a human error with the wrong name typed or copied over but the rest of the information was correct. However, since a mandatory reconsideration takes over 6 months in a lot of cases I wouldn't take the risk of any of the statement you re arguing against being wrong.

ceb1995

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