I've been strongly advised to seek statements for my twins by their hospital consultant. Any advice welcome.

(60 Posts)
jajas Wed 16-Apr-08 19:17:45

My twin boys have been behind in their development since starting school almost 2yrs ago (they will be 6yrs old in July and were 10 weeks premature). The nursery that they attended strongly recommended that they delay starting school (in fact my first thread ever on Mumsnet was a couple of years ago asking about the implications of such action). They eventually started in Reception against our better judgement but after 3 weeks ended up back at the nursery until 5 months later when they rejoined. We tried to get them held back to do Reception again as they had missed so much but the Head assured me that they would be fine and would get extra help in yr1.

Now in yr1, they have struggled albeit with a great teacher but we had a meeting with him a couple of weeks ago and he expressed concern about them. He said that it would be very beneficial if they could be held back and do yr1 again and asked if we would be happy with that and of course we concurred.

The Head has now written to us saying that she spoke to County Hall and that they cannot be held back unless they are statemented. We assumed that they weren't that bad and so agreed that some extra help would be the way to go thus keeping them with their peer group.

By coincidence one of the twins had his annual consultation today with the paedeatrican and she is strongly recommending that we apply for statements for both of them. Apparently we are to contact the Educational Pyschologist who will visit them at school to observe (she came to the house a year ago but didn't report back on an awful lot).

Sorry, very long winded but can I ask if anybody knows what happens next, how long it takes and how hard it is to get them statemented? I get the feeling that it is a very protracted and hard won process from odd threads and articles read before.

Thanks in advance!

jajas Wed 16-Apr-08 20:19:03

smile

girlfrommars Wed 16-Apr-08 20:49:10

Sorry I can't help but bump.

chavtastic Wed 16-Apr-08 20:52:35

Crikey, if they were ten weeks premature they never should have started school when they did; of course they should have been allowed deferred start, they should have been born in September or October, after all.

Sorry it's been so rough.

I think the statementing process is a piece of string -- can be short or long. Good luck.

Hassled Wed 16-Apr-08 21:00:16

I think if you have strong medical support (i.e the paediatrician) backing the statement it should be relatively straightforward but that isn't the same as quick - there are built in delays to the process, as well as people being inept delays. I think DS3's Statement took 8 months, from initial assessment request to the actual bit of paper - at least 3 months of that was down to people being idiots, and that was with me ringing Childrens' Services weekly.

It is still worth it though from what you say - if your DTs can get some hours (my DS3, with a severe speech disorder, gets 20 hours a week) of one to one support they will have the levels of help that no class teacher can possibly provide with 28 other kids around. Go for it but be prepared to nag, nag and nag again. I turned into a right harpie .

Clary Thu 17-Apr-08 01:02:08

jajas there's an interesting thread elsewhere on holding back children and the implications later on in school career.

roisin and others make the point that as a rule children who are out of their peer group go from yr 6 to yr 8 I think, which sounds like a nightmare to me.

So this may be of interest to you.

AFA statementing goes, it takes ages and is very hard (they are given out more sparingly these days) but may well be worth it, not nec to pull them back a year as much as to get extra TA support.

thread here

Clary Thu 17-Apr-08 01:03:48

oh sorry didn't see hassled's post, 8mo is not bad is it. I know s/one whose twins have a developmental delay and getting a statement took them years IIRC.

Obv if the issue is clear cut then it's a quicker process as far as I understand. What I'm saying is, yes, be prepapred for a bit of a battle.

snorkle Thu 17-Apr-08 10:32:24

I'd go for the statement and fight for as much support as you can for them - view the statements as a positive thing rather than a negative one. Whether to hold them back a year is more tricky; I certainly wouldn't rule out the possibility, but get written confirmation from both the LEA and any senior schools you think they are likely to attend that they can remain in their new year on transfer if you do. Also consider that while the difference between year 1 and 2 is large; the difference between consecutive years higher up gets much less marked, so the more help you can get for them as soon as possible the better. Would paying for TA support for them for an hour or two a day yourself be an option (maybe just until the statement is sorted) and would the school be OK with that?

yurt1 Thu 17-Apr-08 10:34:00

Type IPSEA into google and you'll find a template letter to request a statement. It's important that you request the statement and not the school.

mrz Thu 17-Apr-08 10:34:06

The school should be involving the Educational Psychologist on your behalf and applying for a statement. Depending where you live (Local Authorities do differ) it can be a very long process. In my area there is an annual cut off date for applications in November so no more applications will be processed until next November and Statements can take up to an additional six months.

yurt1 Thu 17-Apr-08 10:42:13

Much better if the parents apply for the statement than the school. You have much better protection applying as a parent (and LEA's can not apply silly rules such as cut offs by November if a parent is making the request- that would be illegal).

Do check out IPSEA. It takes you through each stage of the process.

yurt1 Thu 17-Apr-08 10:44:31

IPSEA template (for the request to assess whether to make an assessment for a statement). Note that the LEA have to reply within 6 weeks by law.

mrz Thu 17-Apr-08 11:22:49

yurt parents can only ask for an assessment of special educational needs this is an initial step and not the same as a statement.

yurt1 Thu 17-Apr-08 11:27:26

mrz- but that's the procedure that has to be followed whether by school or parents. the initial request for an assessment to see whether a statutory assessment will be carried out. If it will then it's the beginning of statementing. I did it 5 years ago.

That has to be responded to within 6 weeks. If it is agreed than a statutory assessment is to be carried out then off the top of my head I remember that should take a maximum of 6 months. IIRC It is possible to appeal a refusal to assess or a refusal to award a statement.

mrz Thu 17-Apr-08 11:30:55

As SENCO I can get a statutory assessment much quicker than the six weeks it takes for a reply. It's worth working with the school because it's to everyone's advantage.

jajas Thu 17-Apr-08 11:34:07

Thank you very much everyone, I've only got 5 seconds to reply as about to dash out but will come back and read replies properly later and fill in a few details. Thanks again!

Hassled Thu 17-Apr-08 11:34:39

I think this "Who should apply?" question must just vary from LEA to LEA. DS3's request for assessment came from his SALT, not me, and I was advised that would be quicker. Other people have advised on here to go via the school, others feel to do it yourself is best. The Parent Partnership is specific to each LEA and might have a better clue as to what works best in your county.

yurt1 Thu 17-Apr-08 11:39:01

IPSEA has advised parents for years to make the request themselves. There used to be real legal advantages in doing so (to do with the right to appeal which I can't remember in detail). That seems to have gone from their website so the law may have been changed in that area- but they still advise parents to put the request in themselves. I trust IPSEA more than the LEA (or parent partnerships) and as they deal with tribunals etc day in day out then I suspect there may be a reason for them saying this (I note

In our case ds1 was statemented a lot faster because I made the request. If I had waited for the LEA to initiate the request then it wouldn't have been ready for him in time to start school (non-verbal, severely autistic child was not starting school without full time 1:1 help).

mrz Thu 17-Apr-08 11:50:31

I agree for pre school aged children such as your son yurt there is an advantage in parents instigating assessment but once a child is in school things change slightly. For a statement a school would be required to provide evidence of their actions over a period of time.

Journey Thu 17-Apr-08 11:51:42

Do you get statements in Scotland or is it just in England?

yurt1 Thu 17-Apr-08 11:54:29

Scotland's different- used to be Record of Needs but I think that may have changed.

IPSEA still advise parents to do it mrz- and I therefore think there must be real advantages in doing so. The parents and schools views etc are sought anyway- whoever makes the initial request.

TotalChaos Thu 17-Apr-08 12:02:35

a minor point, but if you apply yourself at least you know what you've sent off and when, so that's one less thing to worry about.

mrz Thu 17-Apr-08 12:25:39

It makes me feel very sad that some parents appear to have such little faith in schools after all it is to the school's advantage to have resources to meet pupils needs.

Journey Thu 17-Apr-08 12:27:14

Thank you yurt1

jjaandmum Thu 17-Apr-08 12:50:43

I would always try to encourage the parents to make the request for Stat Ass as the school and LA authority then has to do something about it. If you leave it to the school they may well have other children prioritised to see the Ed Psych which is essential to the process. If parents make the request then it forces the school to ensure your child 'jumps the queue' to see the EP. Of course it may be different in other LA's, but this is how it has worked ime.

yurt1 Thu 17-Apr-08 12:52:04

Well tbh I think if parents have little faith in schools it is often with good reason. A trip through the SN section will show you that.

It is a good idea to make sure you are completely on top of the statementing process. LEA's will not automatically follow the law. For example if your child needs SALT it will not be put in parts 2 and 3 of the statement unless you insist. Wether you decide to insist or not is up to you. When ds1 was in mainstream we decided we would - and it was lucky we did as his SALT went on maternity leave and was not replaced (the LEA therefore had to pay for a private one to go in). The school were pleased to have the private SALT in - but they would not have been pushing for SALT to be in part 2 and 3- they didn't even know it was an option (much less that it was the correct place for it).

When he moved to special school the new statement had SALT in part 5 - we decided not to bother getting it moved as we trusted the school to have necessary skill/expertise - and there was an onsite SALT. It's worked out fine.

mrz Thu 17-Apr-08 15:19:48

If parents and schools are working together there would be no need for organisations such as IPSEA who are surely there to offer legal advise if things go wrong??

yurt1 Thu 17-Apr-08 15:55:29

IPSEA don't offer legal advice as such. They're offer independent support to parents. They will support parents going to tribunal etc, but most would employ solicitors as well.

I many cases the LEA refuses to follow the law (eg my example with SALT- the LEA refused to quantify hours- they should have).

In many cases I have come across schools have pretty much refused to work with parents (was vaguely my experience in mainstream).

mrz Thu 17-Apr-08 16:04:22

Maybe I misunderstood their website
"We give free and independent legal advice and support in England and Wales "

yurt1 Thu 17-Apr-08 16:08:28

<sigh> They provide advice on the law relating to SEN (such as putting SALT in parts 2 and 3 of a statement), and they will provide tribunal support. However their volunteers are not (generally) lawyers and so people going to tribunal for example would usually have a lawyer working for them as well. When I rang them for example I spoke to a trained volunteer parent. Not a lawyer.

I was using the term legal advice in the strict sense that a solicitor/barrister would recognise it.

mrz Thu 17-Apr-08 16:09:43

and I was using the legal term in the same way as IPSEA use it.

yurt1 Thu 17-Apr-08 16:12:43

this is the type of service they offer

I would advise any parent about to start statementing/dealing with SEN and the education system to look at the IPSEA website and contact the helpline if necesssary. If you do be aware you will be asked to leave your details and will be phoned back-something that might takes days because they are so over-run. They are very good,

yurt1 Thu 17-Apr-08 16:19:12

oh fgs mrz. I'm not sure what your problem is here. Picking a fight over the semantics of 'legal advice' is fairly unhelpful to the OP.

jajas- IPSEA are the first stop for advice on statementing etc. They will take you through step by step. You can also contact your local Parent Partnership, but it's worth remembering they are funded by the LEA so their advice isn't always impartial (mine for example told me my son didn't need 1:1 hmm)

mrz Thu 17-Apr-08 16:25:45

I don't have a problem other than I don't see the need to involve a third party unless you feel the school /LA isn't fulfilling their statutory duty. I agree by all means involve others if this is the case but surely schools should be given the chance to fulfil their duty of care before taking such action. In my experience as a parent of a child with SEN and as a maintained school SENCO things run much more smoothly when both sides work together for a shared goal.

yurt1 Thu 17-Apr-08 16:36:31

hmm

You can work together for a 'shared goal' much better if you know what your child is entitled to. That's the role IPSEA can play. For example when we were statemeting the IPSEA website provided the template and the information I needed to ensure that SALT went in parts 2 and 3 of the statement. I was able to print off the relevant bits of the website and pass them across to the statementing officer (with whom I have a great relationship incidentally).

As a parent you will not necessarily be told the 'truth' but the school (perhaps because they don't know it), or the LEA (often because they don't know it either- I honestly think my statementing officer thought SALT should be in part 5 until I handed her the information) or if they do know it then they might still not do it (such as ds1's statement now, SALT in the wrong place and not quantified- we took the view that as long as he remains at his SLD/PMLD school that doesn't matter).

Having the necessary information before you go in means that you know what to ask for.

SENCOs and schools vary. I either have personal experience of, or close friends have experience of 6 different SENCOs for example. 2 have been excellent and the other 4 useless, one of them to the point of being obstructive.

Getting independent advice doesn't mean you have to fall out with the school or can't work with the school. It just ensures you're not a walkover. DS1's mainstream school were very pleased with the statement we got him (full time 1:1 and SALT in part 2/3 of the statement) - it made their life a little easier.

yurt1 Thu 17-Apr-08 16:55:07

I think re-reading this you are mistaking how I am suggesting using IPSEA. I am suggesting their use (in the first instance and assuming no problems arise) as an information resource. As the quickest and easiest and most independent (and free) way to get information about statementing and the LEA's legal responsibilities. If things turn difficult then they can be there to help, but they can also just provide information to ensure the process is smooth and easy.

I don't actually know anyone at all who has gone through the statementing process without referring to IPSEA's advice in some way. Even if that's just checking things on their website.

welovetelegraphpoles Thu 17-Apr-08 21:58:48

I always understood IPSEA to be an organisation that provided advice to parents going through, or about to start, the statementing process.

Also believed - and haven't heard differently - that their role is to support those parents and make them aware of the statementing procedures. Surely this knowledge helps both parties? After all, there's plenty of charities and other "third parties" that help with applications for things like DLA etc. Surely, involving a knowledgeable third party is to everyone's benefit? Saving time and providing constructive information?

I actually didn't use them, and we were lucky enough to get a statement without a battle (pretty upsetting to realise that DS2 was so needing this that no-one quibbled). But I'm also pretty well-educated and able to fill in forms and we had plenty of professional support in the form of reports - lots of parents aren't as lucky, and this is where an advisory body can help everyone with time and advice!

welovetelegraphpoles Thu 17-Apr-08 22:09:04

Actually thinking on this....I probably did use them.....because I bet some of the advice I saw on here, on threads at the time stems from IPSEA!

jajas Thu 17-Apr-08 22:12:56

Ok I will take a look at the IPSEA site over the weekend. I rang the Parent Partnership today but they aren't taking on any new cases until after the Easter Holidays which is next Monday. We had the Educational Psychologist visit at home so have written to them asking for a school visit to follow.

The Head isn't that keen or so it would appear initially to involve 'outsiders' for want of a better expression. She has consistently assured me that they can deal with it within the school but the Paediatrician clearly thinks otherwise.

I'm being positive about this, hoping that they will get the help but of course have worries that they won't get anything and then I will be worried sick that they will slip through the net. The Paediatrician painted a very gloomy picture of how they will progress through school (or not as the case would be) if we don't get help. Both my twins (especially one of them) is very quiet and she said he will just sit not understanding at the back of the class and no-one will notice him as he won't be behaving badly sad poor little thing.

Friends have been great, very supportive but I do dread sympathy ~ well patronising sympathy IFYKWIM.

welovetelegraphpoles Thu 17-Apr-08 22:30:58

Have heard of cases where school says it can cope.....and then doesn't.

Really do think, if you can cope, and get necessary support and advice, request statement yourself. If the school wants what is best for the children, they'll support you.

yurt1 Fri 18-Apr-08 07:21:54

The paediatrician is being quite 'blunt' which suggests that the extra help really is needed iyswim.

One of the biggest problems with SN education in mainstream (and I'm not suggesting your twins be educated anywhere else) is that it depends year on year on individuals. They had a great teacher this year but may not next year iyswim. A statement offers legal protection for support they're entitled to iyswim. OK, often they're ignored, but you have something to work with when you have a statement.

I don't buy the "you need a statement to be held back a year"- that's LEA doublespeak. There is nothing legally about the year a child has to be in other than LEA self derived policies. Usually the statement would not mention which year a child is in either. That just sounds like some sort of excuse for not doing it.

When ds1 was in mainstream they looked at repeating reception. The LEA weren't keen as they said that ds1 would 'have' to move to secondary at a certain time (actually as he's in special school now it makes no diffference the school goes from 3-19), and my friend's dd in the same LEA has been in all sorts of year groups. What the school did with ds1 was 'officially' move him into year 1, but he still spent a lot of time in reception class. I guess that needed an LSA for him to work (which he had via his statement).

What I'm saying is that if you statement don't think of it as a means of getting a repeat of year 1 - there are other ways you could push for that, but do think of it as something really useful that will document your twins needs and provide money for support they need above the amount the school is able to supply.

Have a browse through the IPSEA news as well to see if your LEA has ever had its knuckles rapped for poor practice. Helps you know what you're up against.

Candlewax Fri 18-Apr-08 09:04:17

Can I just give my own personal experience of working with SENCO and getting a proposed Statement. My ds's SENCO told me that if I was to go ahead and ask for a statutory assessment which, if I was lucky would lead to a Statement, then my son would receive nothing more that what the school was already providing.hmm She said that parents think that having Statements opens doors and it does not and in view of "Every child matters" there would be no way on earth that he would get a Statement anyway.

Well she is wrong on all counts. We are at the proposed Statement stage. The LEA have not bothered to get SaLT or OT assessments done even though their own assessors recommend it. They have not bothered to carry out a Dyslexia test even though their own LEA home tutors recommend it. So I am having all of these carried out independently.

This means that the proposed Statement we have received is a pile of poop. I have sent back the 15 day parental letter to say "No" to having a meeting with them and "No" to making any written representations. There is no need for me to do that, no legal obligation on my part at all. And, quite frankly, who wants to waste time "negotiating" a proposed Statement that is clearly inadequate. The LEA have had chance to carry out all the assessments they deem necessary, I am not going to allow them to carry out anymore as my ds has had enough, they had their chance. I am just biding my time until the Statement is finalised and then I shall put in an appeal to SENDIST. By the way, the LEA did describe my ds's needs as "severe and complex" too.

The LEA have also worded their Statement that my ds would go straight back into mainstream at the school he has currently had a breakdown at and with a SENCO that is not at all clued up on what she is doing. How can I even possibly think of sending my child back to a school where I am told that he would receive no more than what they were already providing. I think not.....

Candlewax Fri 18-Apr-08 09:11:09

Just for info too - the SEN Code of Practice has now changed and section 7.12 states that parents CAN appeal to SENDIST should the request put in by a school be refused.

I still personally would put it in as a parent as some schools are not keen to support parents. Also when gathering evidence, the school has to put in what they have and have not tried anyway.

Also, keep every single piece of paper on your children. I did and I am so glad I did. I was able to quote and photocopy documents to send to the LEA which showed that there had been a problem for my ds since Infant school.

jajas Fri 18-Apr-08 12:32:50

Thanks again everyone for all your advice. Can I ask how many of you have resorted to outside help in the end? Paying for independant assessments and tutoring in the long run?

Initially I was keen for them to be held back a year but now that they are nicely settled within their year group I would much prefer that they get extra help within that year group.

I can see that I have an awful lot of swotting up to do before I throw myself into this somewhat protracted process.

jajas Fri 18-Apr-08 17:40:22

smile for evening folk

yurt1 Fri 18-Apr-08 18:51:29

It depends what you mean really. We didn't pay for anything for the statement, but we have paid for an awful lot over the years in terms of help for ds1 (thousands and thousands). Some of that was paying for what I call 'basic services' that the state should have provided. Other were extras that it would have been nice to have had supplied by the State, others luxuries.

One recommendation I would make is to meet your statementing officer asap- things became a lot easier/smoother once we'd met face to face. I think we became real people (on both sides).

jajas Mon 21-Apr-08 10:05:18

Thanks again everyone.

I've just spoken to the head at the school and she has told me that it will take 4 - 5 YEARS to get any kind of statement in place! Tell me she is having me on? I have the distinct feeling that she doesn't want to play ball and I cannot work out why. She keeps saying that they will get extra help from the TA in class but the paediatrician clearly didn't think that this was anything like enough. Arghhh! I've posted my letters to the EP, special needs dept and to our previous Consultant Paediatrician at the hospital looking for some further advice.

jajas Mon 21-Apr-08 19:19:42

.

yurt1 Mon 21-Apr-08 19:28:08

She is having you on.

Contact the IPSEA helpline. They will talk you though the process - they've done it many times before (although bear in mind it will take them a few days to get back to you).

yurt1 Mon 21-Apr-08 19:28:08

She is having you on.

Contact the IPSEA helpline. They will talk you though the process - they've done it many times before (although bear in mind it will take them a few days to get back to you).

TotalChaos Mon 21-Apr-08 19:33:23

agree with yurt. 4-5 years sounds conveniently similar to when your twins would leave primary school, doesn't it hmm

TotalChaos Mon 21-Apr-08 19:34:31

/slight hijack but on a similar note

on another board a lady said that in her authority kids had to have 18 months documented evidence of falling behind at school before they could start the statementing process - that's also bollocks, isn't it?

yurt1 Mon 21-Apr-08 19:48:52

yup. A parent can request a statement whenever they like the school then has to provide evidence etc etc. Of course it's harder if the school are being obstructive but there are appeals processes etc.

I'd post in SN as well (and special educational needs, although the SN section is busier). Plenty of people who have been through it in there, and many don't bother to read the main boards.

jajas Mon 21-Apr-08 20:01:55

Thanks everso much, I will go and have a look on the SN board now. Thought 4/5 years seemed pretty unlikely and she is definitely being obstructive which makes the whole thing even more depressing. Thanks again!

Heated Mon 21-Apr-08 20:35:10

Defintely do as Yurt advises- - she knows loads!

I'm in no way an expert, just an English teacher who has done some support re dyslexia/dyslexic type problems (shouldn't be me but needs must when there's no money). I get bloody angry and cynical when a child gets all the way to year 7 & should clearly have had a statement at primary and hasn't. For us, once identified they normally go through in about 7m to a year, but there's already been 4 or 5 wasted years fgs! Schools can and should put in place in-house support whilst the statement is being processed. It isn't fallow time.

yurt1 Mon 21-Apr-08 21:19:34

There's so much crap spouted about statements, such as they can only be given to the bottom 2%- absolute rubbish and a complete twisting of what was said when they were introduced.

lorrikeet Mon 29-Apr-13 23:28:41

there's a lot of good advice on here
I would telephone the local council / education officer for SEN first; ask them to explain the procedure for FORMALLY requesting a statement, get personal contact going with the relevant department like yurt says... this is really helpful.
use 'parent partnership' or IPSEA for advice: but don't let it stop you if you can't get through to them
Most local council websites explain the procedures, and how to request a statutory assessment Its a statutory process with timescales & appeals procedure.
sadly it seems schools are often not too helpful, although you will need their input during the process, so they need to be on-side. If the paed will send you a letter / email confirming his advice that might help get the ball rolling.

we got one for my son in about 6 months. there's no need for it to take 4 - 5 years if everyone agrees it's needed. If the local authority don't agree its needed, that's when it gets drawn out and you have the option to appeal decisions at tribunal.

I agree that the SN threads are a great source of advice, And there are many people on there who have had to fight for statements, But its not necessarily going to be a struggle if your DC(s) have clear needs.

DiscoDonkey Mon 29-Apr-13 23:32:38

THIS THREAD IS FIVE YEARS OLD

lorrikeet Mon 29-Apr-13 23:33:13

sorry, meant to say I also was advised by the school to contact the ed Psych. This might be one route, but it doesn't contsitute a formal request for the statutory assessment, and you could just get delayed for months and have to make the formal request later anyway. I would follow the statutory procedure, then the LA is obliged to carry out the assessment.

lorrikeet Mon 29-Apr-13 23:34:25

oops grin

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