Why won’t they assess my poor little boy?

[Candycanesallround]

My 4 year olds EHCP assessment request has just been turned down for the second time. First time was because his preschool hadn’t submitted enough cycles of evidence, second time because they felt more time was needed to see if their ideas helped him make any improvements. He’s been at the preschool 10 months. His ASD/ADHD has been confirmed by various professionals who have all assessed him and written reports confirming this. They have all recommended he needs the support of an EHCP. He has no learning disability and is very bright. But he is hugely impulsive, no danger awareness, very very hyperactive although when he is very interested in something he can hold his attention and focus well - but only when it is something he’s really into, like a puzzle. He has good language skills - not such great back and forth conversation skills. Physically very able which is good but his speed and strength combined with his impulsivity and lack of danger awareness terrify me. I am going to have to go through an appeal tribunal. No idea if I will be successful.
I have zero and I do mean zero support. I have a 7 year old daughter who is lovely but I constantly feel
guilty she plays second fiddle to her brother and his additional needs. I never have enough eyes or hands or time to do it all. I work part time. His dad lives with us but is basically a hologram in that he looks like he’s here but he isn’t really. He goes to work and watches tv the rest of the time; he hasn’t even read any of our sons reports and when I tearfully told him the EHCP assessment request I’ve been fighting for has been turned down again, his response was “I thought that was all sorted?” 🙄 No family. Lots of lovely friends but they all have their own kids and issues etc.
I cannot overstate how through the roof my stress levels are.
why won’t they assess him? Will they ever assess him? What happens if they don’t? Will he literally just be left to struggle in school without help?
I honestly cannot breathe sometimes with the worry.
any knowledge or advice appreciated. Thankyou

My DC was turned down first time.

I requested mediation.

3 days before the mediation session I guess they must have actually opened her case file, read the reports and concluded it was an open and shut case, and I got a letter saying they would do the assessment.

The bar for securing an EHCNA is extremely low, although no LA will tell you that. You only need to have reason to believe your DC needs additional support and they MUST assess.

I'd go down all avenues you can, and don't close doors on yourself.

Unfortunately Op, it sounds like you are going to have to go down the route for appeal.

The stats are on your side for success - I never went for mediation. We know have a specialist place.

Please ignore the people who call your child ''naughty'' - you obviously know your child best.

And I seriously wouldn't wait and see. Early intervention IS critical.

I am currently seeking ASD diagnosis as a 30 year old adult who in hindsight, was clearly neurodivergent and I'm really struggling now. My genetic counsellor is offering his full support for my assessment.

EHCPs will at the very least, if you feel he might need it in the future, open the possibility to view specialist provision.

@DrRuthGalloway of course a very small minority of parents are unreasonable, but, as the statistics show, more often than not it is the LA who is unreasonable, not the parents. More often it is the LA and sometimes other professionals incorrectly presenting completely reasonable parental requests as unreasonable.

You may not write inadequate &/or inaccurate reports, but many do.

A few PP saying this. I'm in Scotland & my DS had his adhd diagnosis (CAMHS) by age 4.5. He was referred by his neurologist (he also has epilepsy). ASD diagnosis was later at age 9.

OP you have your hands full. Have you tried medication? The right meds monitorer properly can change lives. We've been through lots of combinations of stimulant & non-stimulant. DS is now 11 & we have a combination that works really well for him.

The problem with LA reports is not so much that they downplay the need for support but that they do not specify and quantify as required and as the reports form the basis of provision in an ECHP you end up with meaningless wording such as 'may benefit from access to...' rather than 'x provision, 30 minutes 3 times a week, provided by HLTA' etc.

It's a fucking insult to SEN parents everywhere when people say "why are you pushing for this at such a young age?" (because my child needs help and I can very clearly see it, FFS) and "he's just naughty" and "you need a parenting course" (I know how to parent, piss off).

Ignore the dickheads OP. Hope you get the support you need. We're on the same path, only the paediatrician we waited years to see said DS couldn't possibly have ASD because "he's a good child" and "he seems normal" and yes he actually implied children with ASD are bad and abnormal. 🤬 I was so shocked at the ablist language coming from someone paid lots of money to understand SEN kids that I nearly walked out. He also said they wouldn't assess DS until age 6 for ADHD which is bollocks and must be a local choice as the NHS says medication isn't recommended for under fives, ergo, children under 6 can be and are being diagnosed with it.

We also got offered the parenting course despite the fact that my son has no behavioural problems at all, he is just very inattentive, has no sense of danger, doesn't respond to his name (or anything else), didn't say a word until he was 3 and is only interested in trains, and I want to know why so we can support him because they all bang this drum about how early intervention makes the most difference then they make it impossible and demonise you for trying to get that bloody early intervention they harp on about and the waiting lists for everything are so long anyway. The joke was on them, I'd already done a parenting course. It was aimed at NT children who respond to things and understand things at a NT level and so was utterly pointless.

Stay strong OP. Parenting SEN kids is bloody tough.

Google Alison Pope. She was a godsend when I was going through similar. She doesn’t actually do appeals, but she can absolutely put you in a prime position with EHCPs. Speaking the SEN language in official papers etc.
it does cost though, but it was so worth it for us.

We've had so many EHCPs go to appeal lately even when it is really clear the child needs one to function in their future education. It is frustrating and time consuming for us and the parents to keep fighting and resubmitting for children these assessments were designed for. Refusals have been increasing over the last few years.

Is he actually diagnosed, or have they just said he presents with characteristics of ASD/ADHD?
You should have a letter stating "outcome: new diagnosis of ASD" if he's properly diagnosed, with pages showing the criteria which panel found he met. If it's just a pediatrician letter saying he shows traits of asd then it's not a diagnosis.

Refusals as a percentage of requests are stable at about 22 percent. Data here
https://explore-education-statistics.service.gov.uk/data-tables/fast-track/1138f0a8-6639-43c8-895c-da467d9340b3

The actual numbers have gone up because the number of requests for ehcp has increased dramatically, from 82k in 2019 to 114k in 2023.

DS was diagnosed at 2. We had all sorts of problems. The educational psychologist who's name is inbedded in my memory recommended he didn't need an ehcp. I fought and lost. At the time pre school and other agencies who'd dealt with DS wanted him to have one. Head of department who's name I will also never forget just would not even call me back. They'd send documents to our old address despite having been told numerous times to update records.
I was suffering with my mental health and got really worn down. Also looking after a child with asd and a new baby, I couldn't cope with it. My son was well supported at school but when I pushed them over the years to help get DS another assessment they said he wouldn't get an ehcp as he was making progress. He also was well behaved which didn't help his case.
Secondary was not good. At all. College was better but without that ehcp he can't stay in education beyond 19, paid for like his peers. He was failed by the system and I strongly regret not fighting harder.
I wish I'd been in a better place mentally to take them on. I feel like I've failed him too.

Actually it's because to cater for one child they have to take from others, and taxpayers refuse to pay more tax. But shoot the messenger why don't you?

Because some children need the additional support and funding from a very young age?

My daugher is 2 and I’ve appealed the LA’s decision to not assess her. It has nothing to do with my daughter and all to do with the LA trying to save money. It’s only now that I’ve appealed that the LA have bothered to get in touch with my daughters nursery to see whether the setting can accommodate her. This is something they were meant to do before deciding whether or not to accept/decline her.

I recently read a report that stated 56% (or maybe it was 58%, can’t quite remember) of appeals are to do with the contents of an EHCP. So even if OP was to wait until her child was 7/8/9 or whatever age you’d expect her to start this process, it’s quite clear that even then the LA don’t always get it right. That means more time appealing and making sure that the EHCP is actually suitable for the child. Depending on the child, it’s better to start the process earlier rather than late instead of hoping they’ll grow out of ‘it’ whatever the flip ‘it’ is

Here’s a thread that I started in September when I was in a similar situation to you OP.

https://www.mumsnet.com/talk/am_i_being_unreasonable/4888664-ehcp-for-dd-who-is-2-help-pls?page=1

I received a lot of great advice and listened. I declined mediation and received the certificate which proved that. I was quite stressed at the time because I had no clue what I was doing but I found a lot of support on the SN Chat board.

It’s a really simple process. Once you have the certificate and you fill in the necessary form, you can submit the appeal by post or via email. You don’t have to submit any new evidence (I submitted everything that I’d gave to the LA initially) and that’s it. I received an automatic email then another email to say that my appeal will go to tribunal in Feb/March 2024. It’s not in person and I’ll receive a written decision which gives me peace of mind as I couldn’t cope if it was in person!

Definitely go for the appeal. It’s nowhere near as daunting as it seems. Post on the SN board if you need further advice as 1) none of the threads show up on active so you don’t get anyway ‘well maybe he’s just naughty’ comments and 2) there are some very, VERY experienced parents on there who will help you out a great deal

All these people who say: “why bother at 4?”. Because a four year old deserves support as much as an older child! Are the Early Years important or not? Can you not see how getting a good foundation helps to set the child up for life? And when the process can take a year or two, applying once they’re really really struggling is far too late. We apply for young children on behalf of the older kids they will soon become.

@DrRuthGalloway you sound genuine and committed. But I’m afraid you also come across as having a significant lack of understanding of the realities of the system across the country and the effects on parents and children. Perhaps it doesn’t matter that you lack that understanding - the important bit is that you do your job with expertise and dedication. But in these discussions I think you would find value in listening more.

Local authorities have spent £425.6m attempting to stop parents getting EHCP/amending EHCP since the SEND reforms in 2014 (£99.2m in the last academic year alone). That goes on courts and barristers mostly. What a waste of taxpayers' money. Imagine how much SEND support it could have paid for.

Source is Special Needs Jungle.

www.specialneedsjungle.com/send-tribunal-2023-councils-stop-wasting-public-funds-send-appeals-fail-almost-all-time/

@MinnieTruck young children can get support and funding without an EHCP.
OP. I would talk with your early years advisor about next steps. Some LAs do next steps meetings after a request for assessment is turned down. Also ask for regular Team around the child and family meetings.

Whatever you do don't wait and see. Senco at nursery where my son is kept telling me to wait and now she's eventually helped me to apply for an EHCP it is really too late (given I have to apply for his school place next month).
DS has unfortunately regressed quite a bit while we were "waiting " and he is only 3 but I can't help feel I've already let him down.

All I have said, if you read my posts, is that having an EP involved early on is more effective than not, because given the chance and the opportunity to observe a child over time makes our advice more informed than trying to work out what a child will need based on a one off visit written under significant time pressure. I accept that it is not always possible for parents to attain that, but it is something worth asking for, even fighting for, in my opinion. That does not mean that I am saying that child won't need an ehcp, but an EP assessment today could start to make a difference tomorrow, whereas an EHCP application nothing much will change for several months. So get the EP in first, then apply for ehcp, wherever and whenever this is possible.

I have said that a "drive by" EP assessment where someone just attends a meeting and says "this all sounds ok" as their "assessment" is poor practice and makes generally less good ehcps that will be in many cases less effective in supporting children, and as an EP I will fight against working in that way, because I don't believe it properly supports our most vulnerable children.

I have also said that not every LA EP will deliberately downplay needs.

I don't know where or why you think I am not listening. To whom? About what?

There is huge variation in each area. So a service offered in one area may not exist in another.

The evidence from the paedatrician should be enough. In my experience when they refuse to assess it’s usually due to one of two reasons either a) they have an unwritten policy to refuse to assess everything b) they have a written policy saying schools must prove they are spending £6k (schools don’t actually have this, so it’s hard for them to spend it!).
In both situations the answer is to appeal because legally your child clearly meets the threshold.
I support families and the first thing I tell them is to prepare from the outset to appeal it. Don’t be surprised or concerned by it. It’s just delaying tactics.

Sorry to jump on but in our situation I asked for an EP to be involved but been told school wont refer as there are too many other needy kids who are higher priority (our child is not disruptive in school but becomes very agitated at home). I am going to start EHCP process myself- do I need to try and find EP privately first?

@Lovemedo345 no, you don’t.

AngeDough Early Years Inclusion Funding does not give the same level of provision or certainty that an EHCP does.

So get the EP in first, then apply for ehcp,

You are missing that in the majority of areas this is not possible. In most LAs only statutory work is being undertaken. It is amazing that isn’t the case where you are, it truly is, but it is unusual nowadays. Waiting also delays getting an EHCP which is the only way of ensuring the required SEP is provided.

I understand and acknowledge that it isn't always possible (though I dispute that it is the "majority" of areas where it isn't possible at all. Part of the issue is that it tends to be school priorities that we get referred where there isn't enough time, and that tends to be the children causing school a lot of trouble - the kids with behavioural issues.)

The trouble is it is a vicious circle in those LAs because it's a horrible way to work as an EP and so in those LAs the EPs will leave or go independent to try to find a more fulfilling job role elsewhere, and so there are even fewer EPs left in those areas. So parents in those areas fight for more ehcps because their children aren't getting a quality EP service supporting schools in meeting the needs of their complex children. It's a bit like going to A and E because you can't get a GP appointment. Lots of parallels. I do not blame parents at all btw. EP services in many areas are Underfunded, undervalued and the result of years of austerity finding and cuts to LA funding. Which is why we recently went on strike for the first time.

All I am saying is - IF you can get an EP early on, do try to, rather than focusing your efforts immediately on ehcp instead . If you get a decent EP, the report will facilitate that ehcp and school will already have advice to make changes while they wait for the actual ehcp to be issued. If you only get an EP during the ehcp process, it will be a quick in and out assessment and whilst we will do our best, we won't know how your youngster responds to quality, targeted intervention over time, and our advice won't kick in until the ehcp is issued which can take months.

@Lovemedo345 you do not NEED an EP assessment to request an ehcp, no. However it can enhance the process. Can you ring up your local service and ask to speak to the EP for your school to get their opinion?

There’s only so much that can be done with the DAF or Early Years Inclusion Funding.

It’s also extremely useful for when the setting themselves aren’t the best in ensuring the child gets as much support as possible due to a lack of staffing. This is when the EHCP comes in and can’t be ignored

@MinnieTruck there is -but if that has not been put in place it is the next step and he is only 4. Putting this in place might mean his needs are met. It might not- but an appeal and assessment if then agreed, can take a year in total or more. If after this his needs are still not met- it’s more evidence for a request for assessment.