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Here are some suggested organisations that offer expert advice on SN.

Which indi reports for appeal?

(14 Posts)
KeepOnKeepingOn1 Sun 04-Jan-15 11:52:28

DS2's final statement is due (delayed since August).

The LA did not get OT or SALT reports even though DS2 had been a patient for years and was visited termly in school by both. They claimed the comm paed should have provided them as DS2 had been seen in the neighbouring county. SALT and OT are absent from the draft - reports from NHS OT and SALT and an indi SALT report that I submitted are ignored. The draft has no SALT or OT provision (literally, OT section says DS2 needs to 'improve gross and fine motor control' and the provision is 'opportunities to improve gross and fine motor control' - they have added 2 words!!). DS2's care has since been transferred and he has been seen in clinic by OT and SALT in LA and is due to be visited in school by both this month. New reports back all previous reports and observations.

DS2 was given a working diagnosis of ADHD in September 2013 by a specialist nurse that visited him in school but this was changed to ASD when seen by a consultant comm paid in January 2014. He then 'passed' the ADOS in August 2014. As I was not willing to accept going back to ADHD the report 'diagnoses' social communication difficulties (across the triad of impairments) and DS2 has been referred to GOSH HFA clinic for a second opinion.

I was already planning to use the OT with postgrad SPD qualifications who will also visit placements to do a sensory profile. I had assumed that DS2 would have NHS ASD diagnosis by the time I appealed but this is now unlikely. Do I need to get a private diagnosis? If so, do I need a SALT who is also qualified to diagnose or else should it be a psychologist or neurodevelopment paed? Also, I will need an indi EP. I used Ruth Birnbaum for DS1 who also has SpLD but would prefer a recommended ASD specialist.

TIA for any advice or recommendations.

KeepOnKeepingOn1 Sun 04-Jan-15 11:56:43

Just seen adrianna's post. smile

I will check out Jackie Harland.

Does anyone know if I would still qualify for a NAS volunteer with no firm diagnosis but undergoing second opinion?

bjkmummy Sun 04-Jan-15 12:42:38

I think you should deffo ask the nas - they must help lots of parents fighting for an add dx. A quick way could be via Daphne keen. Also Margo who is a salt can dx asd as well but best practice also to get a medical dx as well. If you want to look at any of my reports let me know as you were so helpful to me when I went through it with dd. I know Margo isn't cheap. Someone I know is using Jackie harland later this month and I know others who have seen her. Sadly I think appeal is the only way to go as the finalised one is so dire. You won't get to appeal until about june so you do have time on your side which helps.

KeepOnKeepingOn1 Sun 04-Jan-15 13:14:31

I don't know how significant the lack of firm diagnosis is from an appeal pov. Nobody (EP, school, OT, SALT, comm paed - even the LA) has ever suggested that he does not have functional and social communication difficulties but nobody is quite sure how to diagnostically describe his difficulties. That's why we are going to GOSH having 'exhausted local expertise'. I have no doubt that he will be given a diagnosis without having to use DISCO and could just as easily 'failed' the ADOS on another day or with another assessor. A private diagnosis of ASD would just be for tribunal and I'm not sure it is necessary.

I used Margo for DS1 but he presents like a girl (iykwim) and 'masks' and she was a good match for him but I'm not so sure with DS2 as his difficulties can be 'seen'. Margo was the first person to actually 'see' DS1 which was more important than the diagnosis.

MeirAyaAlibi Sun 04-Jan-15 22:13:39

If you won with MS & RB, I'd say that's a good reason to stick with them. If your LA decided to tell panel that (say) you imagine stuff, so have a ds1 who got a statement he doesn't need, you've someone on hand to put them right.

Also, they 'know' you, and they 'know' your LA, so they'll just get on with assessing- the baseline is there already.

senvet Sun 04-Jan-15 22:43:08

Sorry I didn't see this earlier.

The rolls royce advice would be a really good ep, salt and ot.
The OT I know who is good at tribunals and sensory stuff is Miri Horovitz Cohen at OT London. Her reports are amazing (detailed and long) I never knew there were so many senses!

Then Jackie Harland - book early to avoid disappointment - and I have just heard of Juanita Hurley but not seen any of the reports yet.

The top EP I know is Peter Parkhouse but he lives in the west country and charges the travel time, so can get pricey.

David Urani has good autism and tribunal experience

I am also really chuffed with a recent find, Dr Tony Mackin

Are you arguing about which school as well, or just parts 2 and 3?

senvet Sun 04-Jan-15 22:52:17

For me, once you have good ep salt and ot reports, then you have a description of all the educational needs and provision for the statement/ehcp. a diagnosis is just an added bonus for tribunal purposes.

Obviously it has all sorts of other benefits, but you can head along to appeal without it

senvet Sun 04-Jan-15 22:53:28

Oh and I would definitely ask NAS for a volunteer. You have a diagnosis, and you may soon have 2

senvet Sun 04-Jan-15 22:54:39

this is the last one
and it is just because i forgot to tick 'watch this thread'
bit new to this posting thing!

KeepOnKeepingOn1 Mon 05-Jan-15 11:23:55

Thanks for your replies smile

senvet - I have named another m/s primary in the next village in my comments to the draft. I named it back in June/July but the school said 'no' because it was up to its PAN of 27. Local catchment primary also said 'no' as it was up to its PAN of 27. Primary in next village has good rep for SEN, and has TA experienced with ASD in class all day. Catchment primary has below average rep, little experience and only has a TA in class in the mornings. So of course the LA chose their preference of the local school and forced them to take him. In a meeting they said that we would have to go to tribunal to get parental preference. DS2 has no specified 1:1 and so is completely unsupported each afternoon when only the CT is in class. Instead of 15 hours in class support plus 7.5 hours break and lunchtime he only gets a total of 15 hours (7.5 hours in class - well actually out of class interventions such as gym trail, lego therapy, friendship circle and no in class support) because there is not even a TA in the room for him to 'access'.

Once the indi assessments, and particularly class observations, are done, parental preference may well be indi ss but I feel I need advice about the sort of placement that would be right for him. He is also on the 99th percentile on cognitive assessment but is disengaged and underachieving. It might be that the sensory environment in m/s is simply to challenging or it could be that a small quiet class makes no difference to his motivation to follow adult instructions.

So I will appeal parts 2, 3 and 4 but will likely amend part 4 when I receive the reports.

senvet Mon 05-Jan-15 12:44:09

Wow - one smart cookie you have there

I always smile/groan when I see the number of hours of support limited to half a day
The smile is for the open goal that they have left to win a point
The groan is for the child

The argument is simple: your child is entitled to full time education to meet his needs. If his needs conveniently vanish at the same time every afternoon, then by all means limit the support.

If, for example, he never needs help in numeracy/maths then fair enough. But it is (almost) never worked out like that.

If you can get the indie experts to look at your choice of school(s) and the LA school on the same day it will save money. Do you have an indie school in mind?

A friend got a trial day in an indie ms that she thought might be good and that was really helpful to her in making up her mind. For her rather bright kid, the small class, willingness to meet needs, and above all the work being set for his clever-lad level was enough to put everything right - so far, so good, anyway.

The other thing that happens often is that a space in your chosen ms primary may magically appear when the LA thinks that they will be faced with an indie ms/ss bill.

But parental gut instinct is a pretty good guide. If it feels right, it probably is, although sometimes it takes seeing the experts reports to explain in terms of centiles etc why the parents were right all along

Oh and another excellent ep is Ann Baumber 01732 840943

Hope that helps

MeirAyaAlibi Thu 08-Jan-15 22:35:08

RB has an excellent reputation & does a fair amount of ASD work.

Icimoi Fri 09-Jan-15 14:57:09

I would say stick with Ruth Birnbaum and Margo Sharp. I'd suggest Melinda Silson for OT.

MeirAyaAlibi Fri 09-Jan-15 22:36:51

If diagnosis matters, MS is a good choice. And/or ask local CAMHS to repeat the ADOS, or do disco or 3di. Why they can't just say ASD plus ADHD beats me. Don't they know most neurodevelopmental 'things' come as a BOGOF deal?

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