Is this a spiky profile? - advice on SA refusal

[marchduck]

I'm getting more and more confused, very grateful for any advice.

My DD was referred by paed at her second multi disciplinary assessment for asd assessment, and to ed psych due to significant delays and possible learning difficulties.

EP observed and tested her at pre-school, aged 3.9. Scores were:
verbal ability: 82 (12 centile)
non verbal reasoning ability: 106 (66 centile)
spatial ability: 67 (lesser 2 centile)
general conceptual ability 82 (12 centile)

Ep's view was that DD's scores were acceptable for MS, no need for any support for primary school. She said she would refer DD for visit at pre-school by ASD pre-school advisory service to give pre-school support. All well and good, but I was ultimately hoping for support for primary school, not pre-school. Pre-school suits her lovely; high staff to child ratio, choice of activities etc. Pre-school staff have always been fantastic with DD. Her keyworker (the SENCO) is very experienced in the condition, and has given me more practical support than anyone else.

DD had her ASD assessment two weeks after the EP saw her. DX was moderate ASD and speech and language disorder. I phoned EP- outcome was that she reiterated that DD's overall score was fine - only children at 2 centile overall would be moved to stage 4 on the basis of learning difficulty.

I told EP that I was worried about DD's lack of purposeful communication and initiation, for starting school.She agreed (to get me off the phone, I think) that a colleague would visit pre-school again this term, as she herself would be off then. But she reiterated her view that DD's overall score not sufficient to attract additional support.

I applied for SA. Last week, I received notification of refusal of SA, on the basis that they want to see how DD responds to ASD advisory inventions, and they MAY consider following this if appropriate. I phoned ASD advisory service that day - they hope to arrange visit in Feb, and will take it from there....

So, I know I am now looking at tribunal. I have just got appointment to see private ed psych to get opinion on how to proceed. I would be so grateful if anyone has thoughts on the profile - is it spiky enough in itself to warrant further investigation?

Looks like you have fallen foul of the 2% stupid rule ie that only children in the bottom 2% academically get a statement - it's a blanket policy and totally wrong.

Stand firm and get your appeal in. I've never had to appeal against refusal to assess - there's plenty of people on here who have and I'm sure will be along with good advice. Read the guide on the IPSea website about refusal to assess as that's really informative.

Oh and also get yourself a code of practice as well

bjkmummy, thank you for this, I am going to appeal. I had at first thought about about waiting to see the outcome of the asd advisory intervention, but on thinking about it, there's probably no point - there's no obligation on them to do anything, and by that I would be out of time to appeal.

Good luck with yours, and thanks again.

This 2% 'rule' is an illegal local LA blanket policy. It is true that only 2% of DC have statements, but not necessarily the lowest 2% academically. Have a read of the SENCOP, should be able to google it. As a guide, my DS's assessments ranged from 99th centile to 7th centile, and he has a 20 hour statement.

Well, you don't want a statement based on learning ability. You want a statement based on her asd and support needs in an educational environment.

Dd2 was statemented and she is over the 99.9th centile across the board. It doesn't stop her having a disability that needs support in a mainstream classroom.

Two entirely separate things. Stop focusing on the scores - they mean nothing at this stage in the game, and start focusing on what support she needs to be able to access the curriculum - starting with speech and communication.

Or, you could wait for the asd team to get involved, and gather more evidence which will give you a better chance. As they have told you this is what they want to happen (and you don't actually have any IEP evidence to back up that she does need support in excess of this involvement) I would be utilizing the asd team and biding my time.

It's unlikely they will consider statementing until the outreach team have been involved.

Why do you want a statement at this point? You have been offered additional support and intervention? Tis means dd is happily ensconced at SA+, and if she fails to meet IEP targets under the asd outreach team, you have full evidence that SA is necessary.

At the moment, you are being offered ASD outreach and ASD STA, and you are saying 'I don't want that, I want a statement'.

I'd be evidence collecting to ensure success, and exploring the asd team's support strategies.

I wouldn't be wasting my time and emotional energy on an appeal at this point.

Blanket policies as well are illegal in law.

If you do decide to appeal re refusal to assess I would look at IPSEA's guide to doing so beforehand. www.ipsea.org.uk is the website.

EP is also under pressure not to readily agree to statement either seeing as the LEA are also her employers.

This "wait and see" approach is all very well but in some cases the outcome is that the child has to be seen to be failing before anyone other than the parents actually takes some notice. There is also the very real knock on effect to the whole family when that happens; how many times have we read on here for instance that child bottles up all the frustrations of the school day only to kick off when at home?.

The problem to my mind with ASD outreach and the like is that some schools take very little notice of them, ASD outreach don't have much clout. SA plus can be limited in terms of overall support and it is not legally binding.

Marchduck, it depends on other factors too, is she aware of dangers? Will she need 1-1 for that? How are her self care skills, does she have sensory issues? What does preschool think? For example my ds is functioning at 18 months at the age of 3 ( for self care much lower), not aware of danger at all, has 1-1 at preschool. Solicitor thinks we have strong case. Also depends on your local primary - ours have got 50 children in Reception - there is absolutely no way ds would cope there, I want a statement to be able to consider soecialist units/ special school. I would have thought it's obvious if child needs 1-1 at preschool, he will need it at school... Do not tell the LA staff about tribunal - they play dirty. If the Autism people are independent, chat with them, or ask solicitor/ Ipsea. Unfortunately refusall to assess tribunals have got the lowest precentage of parents winning, I think about 60 %. I'm worried they will say for now ds meets are met and we might assess for statement later... But have to try it, as my LA is famous for awful statements so expect more tribunals. It's not good regarding stress levels, is it...

EllenJane and Attila, thank you for replies.
madwoman, I am very grateful for, and willing to co-operate fully with ASD outreach. DD was referred to this service last October. I contacted them last week - I was told that DD is on their list, and they anticipate arranging a visit to her pre-school next month. I am conscious that time is moving on and there is no ASD outreach support in place - so unable to judge how DD would respond.
babiki - yes, luckily pre-school are very supportive. They have noted that DD needs 1-1 support to remain focused on tasks, and that her communication skills are extremely limited, even when prompted by adults. She also needs support for self care skills etc. They were surprised at the outcome of the EP's assessment. I agree - not good for the stress levels!

Marchduck then I would definitely appeal...

'only children at 2 centile overall would be moved to stage 4 on the basis of learning difficulty. ' tut

Personally I would appeal this.

'waiting to see the outcome of the asd advisory intervention'

May as well wait for the moon to crash with the sun imo

'At the moment, you are being offered ASD outreach and ASD STA, and you are saying 'I don't want that, I want a statement'.'

Madwoman, this is a logical statement for sure, but not what happens in real life in any LA I have come across. You need a statement in order for the ASD intervention to actually happen, despite what they are promising.

You need to take a step back from the rhetoric, and look at the criteria for assessment, which is found in the SEN Code of Practice.

All Local Authorities need to abide by the SEN CoP - they can make their own SA policies, but they can't make policies which take away the rights of parents as provided by the Code.

There are 3 things to consider:

1.Why do you want a statement/Why do you think your DD needs a statement?
2.What do you want the statement to provide?
3.When do you want the statement to be in place?
4.Where do you think your DD needs to be educated?

Firstly, number 4. If you think your DD will or may need a specialist setting, then you will need a statement to achieve that, so appeal will be vital.

Number 2 next. What will a statement provide that is not currently being provided? Apart from the legal clout that a statement gives, the whole point of them is that they are a document which specifies what provision your DD needs which is beyond the resources ordinarily available within the school budget. That can be physical resources, adult support, visits from outside professionals, etc.

Number 3. If the provision in preschool is adequate, then you need a Statement to be in place to provide for her in September. If she needs a specialist setting, you're already running out of time.

The biggy is number 1.

You need to separate out the different issues. The Ed Psych report is a very narrow snapshot of ability. It is largely irrelevant. This is where you need the SEN Code of Practice.

The SEN CoP says:

"4:43 The LEA will then assess the evidence and decide whether the child?s difficulties or developmental delays are likely to be addressed only through a statement of special educational needs. Where a child?s educational needs appear to be sufficiently severe or complex as to require attention for much of the child?s school life, or that the evidence points to the need for specialist early intervention that cannot be provided in the current setting, then the LEA is likely to conclude that an assessment is necessary."

This means that you have to demonstrate that either:

Your DD has severe needs.

OR

Your DD has complex needs.

Complex needs can be relatively moderate needs that overlap and combine to become severe.

For example, my DD was actually quite good with colours, etc., and much of her ed psych report was positive. However, the bits that were negative combined to paint quite a picture. In fact, the ed psych said 'I tried to observe DD from a distance, but this proved impossible.' One of the big things preventing DD1 from being independent is that she has absolutely no 'stranger wariness'. She will walk up to someone, take their hand, and walk off with them, even now at 7 years old.

SO, you may wish to consider whether your DD has needs which are complex rather than severe, looking not only at academic potential but also life-skills.

The next key excerpt from the SEN CoP is:

"7:34 In deciding whether to make a statutory assessment, the critical question is whether there is convincing evidence that, despite the school, with the help of external specialists, taking relevant and purposeful action to meet the child?s learning difficulties, those difficulties remain or have not been remedied sufficiently and may require the LEA to determine the child?s special educational provision. LEAs will need to examine a wide range of evidence....."

This may be where you fall down. If your DD hasn't had outside support in a setting, then the LA are justified in saying that they want to see how outside support affects the situation.

The best thing to do there, is keep a diary and log any situations where your DD's care at preschool wasn't optimal. Ask the preschool to do the same. Any time there is an incident, all communication difficulties, etc. That way, you can present this as evidence of her need despite intervention.

Then:

"7:14 For some very young children with complex needs the LEA should accept as evidence one over-arching report from the lead professional involved with the child. This approach might also be appropriate for an older child who through an accident or ill health suddenly acquires easily identifiable complex needs that require the LEA to assess and make provision."

You may find that a strongly worded letter from her Lead Consultant stating that she needs a Statement, will be helpful.

Finally, remember that those scores are presumably in 'ideal conditions'. DD's report made much of the fact that while she superficially scored acceptably in ideal conditions, the distractions of a normal classroom would push her scores right down and her attention issues meant she would not cope in a busy environment.

Good luck!

Oh, I dunno, star. They have said they won't carry out SA until the asd outreach team have been involved. I'd be using that as my lever, and we know they are going into school next month anyway.

You can choose whichever way you want to play the game, but some make it easier on you than others.

At the moment, the op is at the beginning of the road - her actions now will colour the relationship she has with the LA for the rest of her child's education.

In my opinion, she's better to play the game by using this 'we'll look again after the ASD team' to her advantage.

But, it's all about personal preference. Some people like to go in all guns blazing from the start, others play slowly slowly catchee monkey.

I have no personal preference, but with the team coming in next month, I wouldn't bother to be starting an appeal prior to that.

As I said, it's all personal preference though. No right or wrong in this game. I prefer to work with professionals by building up a relationship with them. It isn't right or wrong to ignore that relationship and just demand your rights. Just different.

But for a newly dx child - I'd be looking at my evidence base and getting some more.

'But for a newly dx child - I'd be looking at my evidence base and getting some more.'

Yes. I do agree with that, and it can be easier to get evidence if you have a better relationships with the professionals at the start so I don't disagree it is a useful strategy to some extent.

However, I do hugely regret the time I wasted waiting for all the wonderful promised provision to materialise for ds, that never did until I started complaining, and then when it did consisted of mostly meetings about meetings and 'opening a file'.

I also think that a child's rights are a child's rights, and parents should not be put off demanding them for the sake of a relationship, particularly in the early years when acting or waiting can have a significant influence over the child's life chances. If the relationship is going to suffer because a professional doesn't like a parent asking for the provision that their child is ENTITLED to by law (which we have to remember is only ADEQUATE) and you're going to end up fighting anyway, you might as well do it sooner rather than later.

Sure, but a few months (or even until the end of this nursery school year, whilst recognizing the importance of early intervention) may well save time and a lot of angst in the overall picture.

I'm not advocating waiting indefinitely. But we know that the team is going into school next month. That's not thinking about an opening a file.

I would be making sure my ducks were in a row at school and with the team prior to the visit, and making sure that as much use was got out of that relationship as possible. I wouldn't be discounting that very real action before it has even taken place.

I agree with madwomanintheattic on this one. The SEN CoP specifically says "the critical question is whether there is convincing evidence that, despite the school, with the help of external specialists, taking relevant and purposeful action to meet the child?s learning difficulties, those difficulties remain or have not been remedied sufficiently and may require the LEA to determine the child?s special educational provision."

This, I would say, allows the LA to take the 'wait and see' view for at least another term.

Thank you all for the replies - just read them.
Lougle - I really appreciate your posts and it has given me much to consider. From our very first appointments, proffs have said DD is quite unusual/complex.
Star and madwoman - thank you both for your views. I work the in public sector, and I think this is perhaps part of my difficulty in deciding what to do next. I am not by nature "all guns blazing" and I can see how playing the long game may ultimately be effective. On the other hand, I have also seen the effects of inertia and intransigence in the application of policies - hasten to add I don't work for a Dept where decision making directly impacts children..
I have much to think about now. I just want to do what is best for DD.

'I am not by nature "all guns blazing"'

You know what? Neither was I once.

'and I can see how playing the long game may ultimately be effective.'

Yes. You are probably right to keep people onside whilst you are all going in the same direction and see how far you can get. Though I would recommend this was done 'actively' with constant evaluation, rather than ignoring things for a bit and hoping they sort themselves out iyswim.

'I work the in public sector, and I think this is perhaps part of my difficulty in deciding what to do next.'

Yes. Me too, or at least I did. One of my jobs was even to help an LA to reduce their spend on Statements, god help me. I saw some REALLY committed people, but the bloody politics......grrrr. It holds everything up and justifies going round in circles as some kind of human right!

'On the other hand, I have also seen the effects of inertia and intransigence in the application of policies - hasten to add I don't work for a Dept where decision making directly impacts children..'

Yep. One of the reason I was fast, (and I was -relatively) at getting provision for my ds was because I understood the 'code' woven in between all of the promises and knew straight away that it was nonsense LA speak, even if the person delivering the talk believed in it (and often they really really do).

Yes Star- this is why I am worried...

sorry, posted too soon - meant to say that in all conversations re. DD I have had, I have had no doubt that everyone has good intentions towards her. It's just that as it moves up the line for decision making, I have seen the individual get lost.

Sure, and that's why I tell everyone to include lots of photographs with their eventual parental statement for SA. But at this point, you don't have the evidence you need to appeal.

I've never been passive with health or Ed profs - and we have moved so often that we constantly have to integrate into new teams - and that's really why I think it's so important to build relationships and gather evidence - I've never had time to waste on appeals etc - I've always had to get it right first time, or dd2 wouldn't have any support at each new setting.