Here some suggested organisations that offer expert advice on SN.

Im clueless. What do I need to do after diagnosis.

(28 Posts)
ItIsAllMyFault Sun 31-Jan-16 20:54:50

We were given a diagnosis of HF ASD for DC age 5 just before Christmas. We haven't had the report, and have an OT appointment in a couple of weeks. We were given an information pack containing lots of leaflets, and advised to contact two local support groups and apply to the DLA.
I'm feeling at a bit of a loss, and not sure where on earth to start. I think my main concern is school, and what I need do next.

zzzzz Sun 31-Jan-16 21:13:19

Contact school and ask to meet with senco to see what support they can offer.

What do you think will help you all?

bialystockandbloom Mon 01-Feb-16 11:53:42

The most crucial thing for guaranteeing support at school would be an EHCP (the new version of what used to be called Statements of SEN). This will involve a round of assessments, typically from Ed Psych and Speech & Language therapist, possibly from OT too. The whole process can take a few months from applying to being issued the final version (if you are indeed given one - if not, that's a whole other story!).

Yes, arrange a meeting with the SENCO. Hopefully school will support you on applying for the EHCP - you can do it yourself, or school can apply for you, but imo it's better for you to do it yourself as a) you know it's been done, and b) you can appeal if they refuse to assess whereas school have to wait six months to appeal (at least, that was the case with the old Statements, may need to check this still applies for ECHP).

In the meantime, try and pin down with school what support they can provide. Try and get a clear list in your mind about what you think he needs at school: support in classroom? specific support in learning? social support? language? OT? classroom breaks? etc etc.

They will have funds to provide some support even without an EHCP. He should be put on the SEN register at school, and on School Action/School Action Plus, which is a less legally binding form of support than EHCP, but is halfway there if you have a decent school.

Also look at local NAS support groups to meet local parents, that can be great for emotional support and network, just to meet parents in similar positions.

Look at other therapies that may help at home - have a browse through these boards for loads of ideas/books etc.

Take care, and I hope you have a supportive family/friends too. All the best.

bialystockandbloom Mon 01-Feb-16 11:56:16

I also meant to say, this board was probably more useful for support and providing useful information and advice than anything else I came across (along with the specific intervention programme we did with ds). Keep posting here, and if you have specific concerns that you want help with there are tons of lovely, helpful and supportive posters here smile

ItIsAllMyFault Mon 01-Feb-16 20:00:46

Thanks so much for your replies.

My contact with SENCO so far has been very mixed, and will definitely take your advice about getting a detailed list together before I see them. The dr doing the diagnosis was critical of the paperwork provided by the SENCO as being vague and making assumptions, and I really think I need the diagnosis report and OT info before I meet them.
An EHCP hasn't been mentioned by anyone we have seen as 'mild' HF has been suggested, but I will definitely look into it.
I've read so much info I'm rather overwhelmed and appreciate the starting points made.

PagesOfABook Mon 01-Feb-16 21:36:14

What problems does your child have that he needs help with?
Social skills?
Motor problems?
sensory problems? Etc

zzzzz Mon 01-Feb-16 22:31:06

My understanding is that EHCP really ISN'T a rebranded statement and is focused only on the most high needs individuals (ie those needing lifetime support and specialist settings or significant focused support in school). Those children who would previously have had their support and funding outlined in a statement but whose need are not of "EHCP level" will now be supported within in school from school budget and where appropriate extra funding from LA. This means relationship with SENCO and HT/school is really key if you don't think your child has needs that would warrant an EHCP.

I really dislike the NHS bods criticize school/LA, the school criticize LA/NHS and the LA trash the others. Its ridiculous and unhelpful as ALL OF THEM have good and bad processes and attitudes.

That said I had NO idea what was available, what might help or who organised what. For me paediatrician and SENCO and HT have all been extremely helpful and I feel we have a good working relationship and they respect my opinion and for the most part back us.

My ds is now in y6 and has ASD/severe language disorder (recent dx) and had a good level of support without either EHCP or dx. What does your ds struggle with?

bialystockandbloom Mon 01-Feb-16 22:53:42

The funding differences of EHCP and statement shouldn't be a concern to the child/family though. Even if the provision contained in an EHCP is minimal, and funded from within school, it means that provision must be met. The thing is without something statutory, schools are under no obligation to provide support. You may get a good supportive school, but you may not. Will they be willing to eg provide slt or OT? Social development support?

zzzz you may have a point that the eligibility criteria for issuing EHCPs is higher than previously for statements, but I take that with a pinch of salt. My ds was deemed "mild" and "hf" and we were told by paediatrician, nursery (this was before he was at school), and the SEN Team Around the Child that he "definitely" wouldn't get a statement. He did. When he started school they also quibbled about the statement, said they could "manage" him without etc. I stuck it out, and the LA EP and slt agreed with me.

EHCP also goes to 25y so should ensure support aside from
School too - hard to imagine when your ds is only 5yo now, but imo definitely nothing to lose applying.

Look at IPSEA website, I found it very helpful.

And talk to senco first.

zzzzz Tue 02-Feb-16 01:08:05

I think the fact it runs to 25 is a good indication of the level of need it is designed to describe. If your child is likely to need significant support throughout his/her education and beyond then EHCP is definitely the avenue you should be pursuing.

I think treating the EHCP process as just a rebranded Statement is a mistake both for the child/family concerned and for the community. The idea was to make schools responsible "in house" for more mild/moderate SEN and thus remove a layer of bureaucracy from the process. This means that you should be able to go face to face with an actual human being in school and get support crafted to your child by people who know him or her day to day.

I know there is concern that that support could be removed BUT schools already have a duty to educate, to provide access to the curriculum and to differentiate. I would like to see those laws more vigorously upheld rather than revert back to the old statement system just with new paperwork and lingo.

StarlightMcKenzee Tue 02-Feb-16 09:57:05

Hiya,

Is the diagnosis HF ASD, or actually just ASD?

It is bad practice to put HF these days. Aspergers is considered acceptable still, just but that is only if there is no language delay.

Find out what the school are providing. If communication is an area of difficulty ask for a home-school book so you are told what has happened throughout his day and can feed in things that might affect his learning during school.

StarlightMcKenzee Tue 02-Feb-16 09:59:31

Just read some more. Let go of the 'mild' and the 'HF'. It won't work in your favour and the terms are meaningless.

It is fine to consider him very able and capable though, in fact this is what will back up any support requests.

StarlightMcKenzee Tue 02-Feb-16 10:03:51

The eligibility criteria for an EHCP and a statement are identical in law.

If a child who had a statement does not go on to receive an EHCP that will be because their needs have significantly changed/improved and a thorough assessment will have evidenced this.

zzzzz Tue 02-Feb-16 12:37:04

That's interesting star because that is not AT ALL what is being said to me or anyone I know if here if you have a good link that I can have on file that spells that out it would be very helpful <flutters eyelids>. Gives up and offers wine

StarlightMcKenzee Tue 02-Feb-16 13:20:17

I WILL find you one!!!

zzzzz Tue 02-Feb-16 13:47:01

OP as far as the dx goes, did they dx HF or just say it iykwim?

KeepOnKeepingOn1 Tue 02-Feb-16 13:55:37

The thing about not having a statutory document is not only that you are dependent on the local offer of the school (which is geographically inconsistent) but that you are also dependent on NHS local policy wrt SALT and OT (also geographically inconsistent). This is despite the fact that the new diagnostic criteria includes SPD issues.

In my area, DC are not allowed to be current patients of NHS OT. Local policy is to diagnose, advise school and discharge. DC have to wait 9 months for the advice to be applied before they can be referred BUT local policy also inexplicably states that DC between the ages of 8 and 11 can't be re-referred. SALT have their own mad local policy.

Therefore the only way to ensure continuous SALT and OT involvement is to have provision written into the Statement/EHCP. The LA then have to pay indi SALT and OT to provide.

StarlightMcKenzee Tue 02-Feb-16 14:26:52

Question 1 here: www.ipsea.org.uk/what-you-need-to-know/frequently-asked-questions-by-topic/frequently-asked-questions/about-the-new-sen-legal-framework

What it says here is that children with a statement MUST be transferred to an EHCP unless they would have no longer needed a statement.

Not as explicit as I would like. I'll try and find other references. I think there is a direct quote from Edward Timpson somewhere.

Local Authorities know the law but are lying to parents about the new system, - a lot. If anything, the EHCP system has a broader eligibility than statements. That doesn't mean the actual person you are dealing with is lying. It could be that they were trained by liars.

StarlightMcKenzee Tue 02-Feb-16 14:57:09

Here it is, - what I was looking for!!!!

www.gov.uk/government/uploads/system/uploads/attachment_data/file/348842/Parents_letter_Aug_2014_final.pdf

bialystockandbloom Tue 02-Feb-16 16:42:09

The increased age of an EHCP vs statement isn't in itself an indication of the severity of a disability/additional need. (SN don't disappear outside of school hours or the moment they leave school.) It's a (welcome) reflection of the fact that SN are finally recognised to be more than just S Educational N.

The severity of a condition like ASD also doesn't become apparent until later too. In many ways my ds is struggling a whole lot more at 8yo than he was at 5, and struggling with a whole different set of obstacles. Which I anticipate will change again and again over the next 10/15/20 years.

I think no one should be deterred from seeking statutory support - otherwise you are totally at the mercy of the whims of your local school.

zzzzz Tue 02-Feb-16 17:32:57

I think it's exhausting and it is not worth pursuing if it isn't appropriate. I DO think the extended age range of ehcp is indicative of the level of need. It is at last recognition that education might take longer if you are still struggling to communicate (for example) in early primary.
The word that strikes me as key in the letter +star* linked to is complex . What does this mean in this context????

ItIsAllMyFault Tue 02-Feb-16 18:06:11

Thanks to everyone again for their replies. Will try and answer qu.
Diagnosis of HF ASD was verbal and I'm waiting for the report (Dec appt.). I questioned whether it was Aspergers as from my own reading it seemed most appropriate. I was told that their term Aspergers was outdated and no longer used, and therefore it was ASD.
Issues with DC are social & communication. For example, doesn't appear to get unwritten rules, talks about own interests, doesn't take turns in conversations, difficulty reading faces, resistant to transition if activity.
No speech delay, in fact is very articulate.
DC is very able at most things but if not interested won't do it or is very reluctant, which is difficult at school.
At school has also been 'magnetically' drawn to certain children who are really not nice to DC including hitting, pushing etc. but DC can't tell you about it, doesn't report it so unless it's seen or evidence visible nothing can be done. I know when DC is anxious but it can takes weeks to unravel what is upsetting. This concerns me.
I think the criticism of school by Dr wasn't totally unwarranted. The completed questionnaire was vague, was not discussed with me, copied to me only after repeated requests 2 days pre appointment. I managed 5 mins with form teacher to discuss.
Great advice re the home-school book will put it on the list.

ItIsAllMyFault Tue 02-Feb-16 18:11:47

forgot to say, fidgets, can't sit still or stand still very long and can be a bit hands in face, and hug and kiss to friends, although this has greatly reduced lately.

bialystockandbloom Tue 02-Feb-16 18:21:53

zzzz forgive me, but I can't believe you would write that - of course it's worth it! Yes the process isn't a picnic, but no tougher than battling with school to provide adequate support, and of course once you have the EHCP not only will that support be statutory, but also you have more resource to a suitable school, and with the new EHCP, provision that might be argued not to be 'educational' (eg OT, or many therapies) can now be provided, by law.

Sorry but I think it is really inaccurate and misleading to try and deter someone from applying. What do you mean by 'inapproriate'? How could eg SLT, OT, support with development of social interaction, social thinking, etc, be inappropriate to a child with ASD?

One of the things I've found most exhausting over the past 7 years (since it became clear ds had ASD), is struggling with school re providing decent support. The only thing that I have to back me up now is his statement. Eg they tried to get away with not providing 1-1 support in reception - thank god I had his statement with it written in then!

zzzzz Tue 02-Feb-16 19:34:57

Because I don't think ehcp is the only way of achieving that. We all have different experiences bialy I'm sorry you find my thoughts so shocking/awful. I'm a bottom line person and frankly there are lots of things people think I "must" support. I'm interested in what helps children. My child should be a walk into SS. It's been hell. If his needs were less I WOULD manage things differently

bialystockandbloom Tue 02-Feb-16 20:58:11

Yes of course we all have different experiences, and I honestly don't have any feelings of what anyone "must" support, but I truly don't think it is often the case that a school will provide everything (or even much above a bare minimum) that a child needs without having it solidly in writing.
All of us here are "interested in what helps children".

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