Surely this can't be right, SEND assessment waiting list

[Jennybeans401]

Dd is in Year 5 and has struggled for a long time, school think she has autism. I'm struggling with her at home, she's burned out from masking all day, needs to stim but won't do it at school and lots of other sensory issues.

I met with the SENCO a few weeks ago and she's scheduled a meeting to fill in all the forms for CAMHS. This will be in two months, it seems a long time. She then said that the school have to do two terms of intervention before they refer for an assessment as may not be needed. If there's still an area of need they can then refer.

There is then another 18 months waiting list!! Surely this can't be right?!

Our local paediatric services (camhs don't assess adhd/asd here) explicitly tell schools they need to evidence implementation of the graduated response which they mean to be two cycles of plan, do review.

Are you referring to an asd assessment or an EHC needs assessment in view of getting an EHCP? If the latter you can apply yourself. The legal criteria bar is low so if the local authority say no just crack on and appeal. There's no legal requirement to have x terms of plain, do, review and no requirement to have a diagnosis as it's based on needs.

www.ipsea.org.uk/asking-for-an-ehc-needs-assessment

We paid about £2.5k last year.

Our child was already at secondary school and we were told a 2-3 year wait with the NHS which just wasn’t feasible with GCSEs coming up, the issues our child was having and the poor attitude from some teachers and the SLT.

Going private we had to wait about 3 months. Then there were lots of appointments for us and our child, separately and together, they requested info from the GP, school etc but she was diagnosed and we had the full diagnostic report in just under 3 months. The EHCP is underway.

Are the school being helpful, offering support, making adjustments? All that can be done before diagnosis. If the school are being unhelpful and your child is struggling, it would be beneficial if you could go private if it’s an option for you.

Anyone can call themselves a child psychologist. An educational psychologist is a protected title but they cannot solely diagnose ADHD/ASD.

School will have to show what interventions they have tried and their outcome.

2yrs plus in our area For CAMHS assessment. It really is in dire straits and totally shocking that any child should struggle, and missing out on their education, for that length if time.

This is all down to a continued lack of investment in schools, NHS, camhs,. Not only is there no money to employ staff, people are not willing to train in these jobs due to poor pay/working conditions (made worse by current staff covering for those not being replaced) . They can follow other pathways ie uni with much better pay and work life balance.

18-24 month wait here (Hertfordshire). Managed to get a private assessment 9 months away...

It depends where you are. We waited about 3-4 months.

The 2 terms thing is an EHCP.

@PawsOnTheBeach school has been helpful but currently the support is lego therapy and allowing fidget toy.

Dd is stimming all the time at home, its definitely a processing issue from my experience.she struggles being static most of the day, regularly meltdowns after school. This is amongst other sensory issues she has

Yep, when DS15 had his first assessment he was 9, they told us the waiting list was 2 years, luckily for us, someone fucked up in the appointment department and booked us in for a final assessment rather than a first one, they just decided there and then to complete it, the dr recognised straight away DS had asd. However we actually had to wait nat oat 3 years for an adhd assessment which apparently DS doesn’t have, they reckon he has sensory processing disorder, we just decided enough was enough and we don’t need to officially know because by the time he gets officially diagnosed he will be about 18, and almost finished school.
the waiting times are shocking. I know DS best friend who also has autism took 4 years to get diagnosed, and they suspected him long before we suspect3d DS.

Sadly OP, the waiting list is horrendous. I waited more than four years to get DD’s ASC assessment.

Op I'm waiting 3 years next month.

We filled in the paper work in July for my DS who is also in Y5. Still waiting.

School should be able to apply for an EHCP and support without a diagnosis. My DS is right at the start of being referred although he's only just coming up to 5. School and SALT have said a diagnosis shouldn't make a difference to the funding we can get for him. If you can afford private, have a look at Toby Henderson. It's not cheap but I've been told it's just as valid as an NHS diagnosis although I appreciate that might vary by area. I hope you get somewhere, the system seems broken and it's tough when it's your kid that's being affected

Actually I believe it’s down to age, dd was diagnosed quickly as she was under 5 I believe under 5 is usually quicker and over 5 usually longer as it then changes to cahms ( at least in my area it does which means a longer wait) I’m in the same area and now ds is older the wait is longer.

Must depend on areas I asked for meeting with sen in my dd school had it a week later forms filled in and sen phoned me up a week later to confirm she had sent forms off and was working with dd teacher to put dd on the sen plan in school. This was back in October I've still not heard from the assessment people but hoping to soon then it's meant to take up to 15 months but I've heard loads saying it's atleast 2 years.

Your LA might not @Ivyleaguestoner but when you appeal the decision not to assess because they are private assessments, the tribunal most certainly will consider the assessments done, private or not!

@Busybody2022 that is awful. A neurodivergent child/individual doesn’t stop being neurodivergent because of intervention! I did think when the school Senco asked why I wanted an ADHD assessment/diagnosis when they could put in the required support that it was an odd question - when it was agreed that all the criteria were present - but that obviously seems to be promoted even if not the way every area works officially. That really worries me in terms of longer term mental health implications.

Agree with this. DS was lucky and preschool started things rolling, but it's always a slow process. He had in-school assessments then hearing tests, and eventually speech and language referred him for an autism assessment. That happened after he'd started reception, but because he was already on the radar, the school made adjustments, ensured he had lots of TA support, and started him with an IEP or whatever the informal plans were called ten years ago. You shouldn't need a diagnosis or an EHCP to get support. DS was still not toilet trained (dry but not poos) but the school were fine as I had a diary of all the actions we'd tried over the years.

Once he got a diagnosis the school then got extra funding (always a year retrospectively, and never for the full hours) - so it's to their benefit to speed things up if they can, but that shouldn't stop them providing whatever your DC needs in the meantime.

I've been there and back so many times - meltdowns, poo smearing, demanding we retrace our steps to do things differently, aggression to other children, again and again.....! Primary school is so hard! I know they're all different, but DS is 14 now and life is really so easy! He sometimes struggles socially and/or academically, and occasionally has minor meltdowns where he doesn't think I support him with social issues (i.e. he doesn't seem able to listen to advice) but I never imagined how much better things would be. Hang in there. Demand support from the school, get the diagnosis when your turn comes - and then apply for the EHCP and anything else you think she needs - but hopefully the time will fly by and your school will be there with you.

Interestingly - I think CAMHS involvement is maybe a postcode lottery? In our county they would never be involved in anything like this, and are there to support older children with serious mental health issues. I've never heard of them being used to support primary school children (except maybe very serious cases which I would know nothing of) - and 'routine' situations where parents are looking for support with ASD, ADHD, OCD or whatever would be dealt with via paediatricians, speech and language, and maybe Ed Psych reports.

Can you ask your GP for a paediatrician assessment? Or apply online via your LA for a non-school referred EHCP? Worth looking at other options. And maybe talking to the National Autistic Society helpine for advice?

Good luck. You're doing all you can, I hope it works out for you soon.

@Jennybeans401 You can apply for an EHCP - you don’t need school to do it! And you don’t need to wait for anything.

Our SENCO is also the Head, I think it's taking a long time because they're tied up with so many other things. It's two months just to have the meeting to fill in the forms

The numbers of children referred for assessment have gone through the roof over the last few years. I work in an inner city area and our local CDC are diagnosing 5+ children A DAY with autism. And while parents do want an immediate answer, the help from a school should never be label dependent, the support should be put in place to meet the presenting needs. In some schools though, there are at least 3 or 4 children in each class with a diagnosis of autism and no matter what funding is put in place, there is noone to recruit to the post, especially not in those numbers. The system is in absolute crisis from every angle and while the enormous issue of retention of health professionals during COVID was a devastating one, the sheer spike in numbers of children going forward for assessment is unbelievably high and assessment teams cannot get through children fast enough.

A diagnosis does not result in extra funding for the school. Extra funding can be given via high needs top up funding or EHCPs but they are based on needs, not diagnosis.

Yep. I waited 5 years for initial diagnosis from paediatrics, then another 4 for assessment from CYPS. DD is 13 and CYPS assessment is next week

MY ds us the same Yr 5 finally put in for ehcp just before Xmas his reading written age is 5 years old