Accepted on NHS waitlist, refused by private provider

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Just wondered if anyone had any thoughts/experience... (TLDR summary at the bottom!)

We had had concerns of ADHD with DD7 for a while - variable focus, tendency to flit and fidget, non-stop talking, huge meltdowns...

Broached with school Autumn 2022 when in parent/teacher consultation teacher mentioned about her being easily distracted and talkative. Despite this, he seemed surprised, but said would observe.

Didn't hear anything back, then Spring/Winter 2023, DD started to have issues in the mornings before school, huge sensory issues with clothes, would rip clothes straight off, also had anxiety about needing the toilet, would refuse to leave toilet at home. Got to the point where she was an hour late, several times a week.

Temporary SENCO got involved, agreed to observe for ADHD, also suggested ASD.

Late Spring/Summer, nothing had been done, new permanent SENCO joined. She observed and said she would do a referral for ASD, but not enough evidence for ADHD.

(Other possible ASD signs, very ritual/routine driven, physical with people - hugging, too close, etc - lower understanding of boundaries, etc, though seemingly overly sociable).

Saw community paediatrician Summer 2023, she recommended further ASD assessment and also that school refer for ADHD.

September 2023, school refer for ADHD. Up to half-term, mega school refusal, was late 1-3 times each week because of clothing issues, not wanting to go, etc. Actually had several meltdowns in the school office, which she had never done before.

Otherwise seemingly fine at school, well-behaved, meeting expectations (though I don't think she is meeting potential, until Easter 2023, she was actually greater depth for reading, now down to meeting expectations). Her teacher this year actually now says her concentration is fine, when up until this year she was "very easily distracted."

In October we received confirmation that she had been put on the official NHS ASD pathway. No word on the ADHD referral.

I arranged a private OT assessment in November, who observed in school, was mainly looking at her sensory issues, but also confirmed my suspicions that she had significant issues with writing and the way she holds her pen (which can be related to the sensory system). Concluded that she had "significant sensory modulation challenges that might be part of a wider neurodevelopmental condition."

Anyway, in the meantime I requested, via the GP, Right to Choose referrals for both ASD and ADHD assessments to local private provider.

We, and the school, filled out the necessary forms and I have just heard that she "does not meet the criteria for assessment" 🫠

We can, with evidence from a health, social or education professional, appeal this decision. Which I have done, sending them both the letter from the initial ASD assessment done by the NHS Paediatrician and her OT assessment report.

TLDR: Seen by NHS community paediatrician for initial ASD appointment, further referred and accepted on waitlist. Paediatrician also recommended referral for ADHD. In meantime, filled out Right to Choose forms for assessments by private provider. Both refused.

Any thoughts?

I am getting to the point where I feel like I'm going crazy and don't know what are actually signs and what's just a variance of 'normal'.

School don't have huge concerns.
The private 'clinician team' say she doesn't meet the criteria.

Yet, the NHS Paediatrician says she does?! And the OT assessed her as having sensory challenges.

Unfortunately, this can happen. If the RTC provider won’t assess I would stick with the normal NHS waitlist.

What support is the school providing? Support in school is based on needs, not diagnosis, so the school shouldn’t be waiting for a diagnosis. If you haven’t already you should request an EHCNA. On their website, IPSEA has a model letter.

Thank you for your reply 🙂

Do you know why? Assume their criteria is stricter to keep the waiting lists down? I imagine school didn't highlight significant concerns in the forms, though the information I provided was no less than I did to the NHS paediatrician, so I would have thought they would have agreed to assess for ASD at least...

I have said I wanted to appeal the decision and sent the paediatrician and OT reports.... If they overturn the decision, do you think it's worth going ahead with them? I know there's no yes/no test, but would the assessments still be sufficiently objective bearing in mind they thought she didn't meet the criteria?

School:

Allow her to go through the office to go in even though we are currently going through a fairly good patch with regards to little school refusal - she refuses to go in normal way now and has to go through a routine of sitting down on the chairs and redoing her shoes and socks.

Allow her to wear jogging bottoms and fabric chew necklace.

Allow fidget toys.

Allow her to go to toilet whenever she asks (general rule is break and lunch).

The whole school has visual timetables in each class and do zones of regulation stuff.

The OT observed her in class and noticed that she did seem to be paying attention and listening. However she also picked up that she was often kicking her legs and chewing both her fabric necklace and the rubber pencil grip I had provided her with (to adjust her grip).

The OT as a result recommended an elastic band for the chair, which DD has since told me has been provided.

The OT also recommended a particular fidget tool, sensory circuits and the school undertaking the 'Write from the Start' books with her (which I have since started with her at home - it was something I had been thinking of doing anyway) - these things have not been put in place as far as I'm aware.

The school seem okay, though DD is totally not a priority as she is well-behaved and meeting expectations (though as I mentioned, I think this is below her ability).

There seems to have been an influx of children with high-needs into the school in the last couple of years and so they seem to be fire-fighting a lot of the time. Because we have been going through the office, I see (a smidgen of!) what they seem to be dealing with.. On an almost daily basis, in the three minutes I am there, it is literally kids screaming and swearing and having meltdowns, kids running out of the school grounds and having to be escorted back in, etc.

Thank you, I will have a look at the EHCNA process... Though I don't know whether her needs would be high enough.

To be honest, she is going through a relatively 'better' phase currently. Her teacher does seem to be pretty good and she is definitely more settled than at the beginning of the year - the sensory meltdowns in particular are minimal currently.

All providers have their own eligibility criteria. This is for various reasons, including but not limited to waiting lists. Only you can decide whether to go ahead and whether you think DD will get a fair assessment.

The threshold for an EHCNA is relatively low - a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. A pupil with the school refusal you describe along with the other needs you mention meets the threshold, but you may have to appeal.