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?!

Yep. It’s appalling.
After over 2 years on the list to be assessed, we then spent 6 months phoning every month to ask ‘is DC near the top of the list yet?’.

Yes that is correct

Actually 18 months isnt to bad in the current state

18 months?! Wow You’re lucky, 3 years in my area…

Yes that's right. We went private and still had to wait 9 months.

Yes, unfortunately. 2 or 3 year wait from date of referral in our area.

18 month waiting list for which bit, exactly? The local authority has 6 weeks to complete a needs assessment if one is requested and it agrees to do so, and 14 more weeks to issue a plan if a plan is necessary.

I'm a bit stunned. It's horrendous!

Having to wait 6-7 months before a referral seems like agony. Dd will have to go to high school without diagnosis, the thought at the moment is unbearable.

18 months would be very quick really. Look in to getting her assessed privately if you can; she will almost certainly be in secondary school before she gets assessed.

waiting lists were huge before the pandemic. Then they didn’t see anyone for months, and loads more kids developed anxiety and so on due to lockdowns, so it got even worse.

It took me 15 years in all to get my daughter diagnosed with autism from the age of 2 when I first highlighted a problem. She was diagnosed with ADD at 10 it’s taken another 7 years to get this diagnosis.

Can you try your gp and get a CAMHS referral via them . If you can afford it go private.

Please write to your MP to tell them that children's mental health funding is a vote winner, if they'll do it.

It took us 18 months to be ‘triaged’ by Camhs we now ave a another 1 year to 2 years before we actually see anyone. It’s a joke. My heart breaks for my poor daughter.
you don’t need to wait for the school though, you can fill the forms in yourself, just ask your gp for the camhs referral forms.

It's terrible, I knew it would take time but it seems like a terrible system and in the meantime we are all struggling on.

We haven't even filled in the paperwork as that's in 2 months time. Then the two cycles of intervention which are two terms. Then if referred then another 18 months. Could well be 3 years. Dd will be in Year 8

29 months in our area

I'm not sure I can afford private, how much does it cost?

The autism waiting list in our area is 2.5-3 years, after the school has undertaken two terms of pre-referral work.

It’s at least 3 years where I live in Scotland. If you can afford it you go private, if you can’t your child suffers. It’s horrible

She doesn’t need a diagnosis to get support in school though. The Code of Practice is clear that support should be based on presenting need. That is the same whether or not she has a diagnosis.

Yes, it’s a long wait for an assessment… and you do have wait to be assessed to then be put in the wait list for the actual assessment.

However, I’m not sure why you have to wait for 2 months for SENCO to help you fill out forms. You can self-refer to CAMHS or your GP can refer you.

The two terms thing sounds more like applying for an EHCP, which isn’t correct either as it’s two cycles of intervention not two terms, a cycle could be two weeks for example.

@Pootl the pre-referral work is the bit I'm confused about. Surely the child needs to be assessed?

I’m afraid we went private. And that was a 12 month wait (COVID backlog). The school should be putting things in place regardless. Our super supportive junior school had put a bucketload of little adjustments in place for DS1 and then are cherry picking others to try from the ASD diagnosis/report but they were much of the way there before we had him assessed.

Yep. Same here.

It's awful. Jsut awful. We took out a new credit card to pay for ds1's assessments. We just couldn't cope with the daily violence and self harming (he's now six and was diagnosed age5)

Even if you do go private, our local council don't accept private diagnosis when looking at EHCP's.
Schools should treat by need rather than diagnosis. My school treat my daughter as 'autistic without the bit of paper' and so she has reasonable adjustments made for her.