Statement before NHS diagnosis

[theDudesmummy]

Hi, i wonder if people here can advise me. I would be very grateful for advice. I am sorry if it is a little long.

DS is 2.8 and only has a few words (about 4), has a number of probable ASD features including headbanging, chewing, fascination with switches and doors etc. I am a mental health professional and have quite a lot of knowldege about ASD, supplemented of course by lots of reading and Mumsnetting as it has become increasingly obvious that there is something going on. I am keen to get cracking with starting to put together an ABA programme earlier rather than later. (We have already been having private SALT for over 6 months)

However, we have no formal diagnosis yet. He has had one (what they called Stage 1) appointment at the local NHS Autism Clinic and has been put forward for a Stage 2 assessment. No letter has come yet, after several weeks, and when I phoned they said it can take up to 6 months (!) for the next appointment. I am not going to wait six months to get things going in terms of therapy. I am looking into seeing a private paed, but not much luck so far in getting the recommended one (Daphne Keen) to get back to me with an appt. I think I will look into other paeds next week (any suggestions?).

Anyway, in a flurry of activity last week, after deciding right, I need to get moving and get all the help I can, I contacted NAS, PEACH, local Parent Partnership, specialist health visitor etc etc, and I also phoned the Local Authority to ask about statementing. My idea is (I think, I am feeling raher overwhelmed by it all) to set up and fund an ABA programme myself and then hopefully later get the LA to agree to fund or part-fund, so I will need a statement, right? Well LA has sent me an info pack and a form to apply for the statementing assessment process to begin, which they say I need to return by 8 Feb (they will also be contacting the nursery).

I suppose things all seem to be happening a little in the wrong order now! I would very much have liked to get a diagnosis (or at least definitive opinion) from the medical professionals) before applying for the statement. But it does not seem that is going to work out that way. What i want to know is, shall I go ahead and apply for the statementing assessment to start anyway? And shoudl i start trying to put the ABA together now?

We applied for a statement before diagnosis although it was imminent (DS regressed so severely at 2.4 he was diagnosed within 4 months). Given the delays in the system its entirely reasonable to press ahead. Just don't expect the LA to see it like that, they will probably refuse to assess. Often they want to delay statements until children are in school and they can say the delegated SEN money provides everything already. However know that even if you waited for the official NHS diagnosis you would still probably be turned down for a 3 year old. You will have the evidence by the time you need it for an appeal.

We also started ABA before much in the way of official help started - we waited 6 months for professionals to come and intervene but no-one came, so just got on with it. I am so glad we did not wait any longer.
You are right you will have to fund ABA anyway for a period and prove it works for your child before you have any chance of the LA funding it.
Our timescale was we applied for statement at 2.6, appealed refusal to assess at 2.9, LA backed down immediately and did assessment at 2.11, got final statement at 3.2, appealed this (no ABA or specialist input at all), got to tribunal at 3.11, got statement with FT ABA just before turned 4. We did private part-time ABA from 2.10 until 3.11 which was sufficient to prove progress with that approach. He also had mainstream statemented provision (part-time mainstream nursery place) from 3.2-3.11 which again was enough time to prove that was achieving nothing (despite 100% 1:1, SALT and outreach). You generally need to prove failure at other approaches as well as success with ABA to get it funded (so we had to run their crap statement and our private ABA side by side)
As you can see nothing happens fast, appeals take 6 months to be heard (and you have 2 months to submit them) so thats 8 months potentially added to each part and you may have to appeal 3 times - once to get the assessment, if they assess but refuse to issue a statement, and if they issue a statement but its no good.
So although it seems the wrong order, the statementing process is so slow and can be deliberately held up by by LAs several times there is no chance you will be left without any evidence. You can also pull out of an appeal at any point.
Going through statementing can often speed up diagnosis as the LA has to get evidence from health, which means they have to collect the evidence.
Getting a statement is no guarantee of getting the right help, even when we got our statement it was just for 'mainstream support' we had to prove failure at that before we could get to specialist help.
So although all the professionals were telling us we were being premature and should wait for all the services to come in what we actually found is that the services were not worth waiting for. Even starting the process early and pushing really hard all the way through it still took from 2.4 when DS lost his speech until 3.11 when the tribunal rewrote the statement for the LA to actually do anything effective for him (and then it was forced upon them). I will never forgive them for wasting 19+ months of his life at such a critical stage of his development, but I am also comforted that I did absolutely everything I could to get him support and by doing ABA ourselves part-time he did not lose out as much as he would have done.
Since he has had FT ABA he is doing really great btw. Slow and steady progress, there are no miracles here, but a different world from where we were a year ago.

Hi,

Tried to post earlier but my phone battery died. We were seen by NHS Paed in Oct last year, was told that the next appointment will be in six months. My DW called up the office almost everyday for a cancellation and we were seen again for a review earlier this month where she set some things in motion, e.g SALT, referral to LEA EP for assessment.

We also went to see Daphne keen privately for a dx. She did not reply straight away but we were seen within two weeks as she had a cancellation. To be honest, seeing her did not make a difference for us in term of intervention and she was not able to tell us anything we did not already know. But what it did do was put a stop to all the "is he or isn't he " questions. You do not need a dx for starting ABA. We have no confirmed dx from NHS Paed yet but we started ABA earlier this month.

In order to speed up the process of statutory assessment, we arranged for a private assessment by an EP. We will forward her report to our LEA EP. I have not looked into the whole statement process yet but I decided to focus my energy on starting the ABA program as that was under my control iyswim.

To answer your question, as Agnes said LEA will not fund the ABA program straight away so by all means apply for a statement but look to start the ABA program yourself privately as soon as possible.

A statement should be based on a child's needs not based on diagnosis. Unfortunately it doesn't always work like that, some LA's will try and tell you it can not be done. Download or ask you local parent partnership for a copy of the SEN code of practice. You can then be armed with the correct information if they try and tell you otherwise. Even saying that, on top of the code of practice there are also local policies to take into consideration, although these can not be opposed to the code of practice regulations, some examples are that regulations state that a statement is needed to access specialist provision (special school), in LA next to ours they have narrowed this even more by local policy so that all children who have a statement must go to special school, my LA say that children who attend special school or resource base within a main stream school must have a statement.
Some LA's will fight the need to put ABA into a statement if they have alternative provision such as autism outreach and behavioural support. Also private reports do not have to be taken into consideration when a statement or assessment are done, meaning that if an LA have had their own EP, SALT or OT observe the child then they will ignore the private reports, whatever they say.
Good Luck with everything.

Thanks so much everyone for taking the time to give me that helpful advice. I am really feeling a bit overwhelmed by it all and it is so helpful to hear from people who have been here.

It sounds overwhelming but in reality as it all takes so long it won't be.
The request to assess will take several weeks before you get a reply, so just put in your views, then forget about it and concentrate on the ABA programme and then when you get the response...
If they say yes you have to put in more parental evidence (usually just repeat what you have already said) and they have to collect evidence from NHS etc which will take many weeks.
If they say no you have 2 months to appeal.
So just one step at a time.
Also if you have ABA in place that will free up your time to do paperwork!

Thanks for that. Can I just ask what may seem like a stupid question for those who have been through/understand the process better than me. When and if we get a statement, how often is that then potentially reviewed or revised?

Can you go back after a certain length of time and say that things have changed, his needs are now more/less/different? He is still very young and different problems and concerns will most certainly emerge as time goes on and some things may get worse and some better etc. For example, at the moment he is only 2, and I am probably aiming for an ABA programme at school and nursery (where he goes 2 days/week). later on we will of course be looking at school, maybe wanting special school, or special provisions in mainstream etc etc....How does that work once you have the initial statement?

A statement is reviewed annually as per sencop, although if needed you can call for a review at any time if needed, also a reassessment if needed. The Code of practice gives you all the information you need, including timelines. It is also divided into sections making it easier to find the information you need.

Ok great thanks very much for the information.

Hi,

I wanted some similar advice if possible as it seems some of you are going through or have been through what we are. I have a 3 year old little boy who was diagnosed with Autism at 20 months. His Consultant has said she feels he's at the severe end of the spectrum and I would say so far she would be right in thinking that. He's non verbal and has no understanding of language or other communication except for a bit of object exchange and a little PECS for highly motivating things like food. He's currently only just getting by with 100% 1-1 in a small mainstream pre school but I can see that failing soon sadly. We have just had his draft statement which was terrible as we are trying to get him into a specialist independent school and the LA want him to go to what I'd call a multi disability school. We'd love to start a ABA program but don't really know where to start. I'd rather have him tutored by someone else until we knew if it was the right method for him as I don't want it to fail just because I wasn't delivering it properly. He has very little interest in interaction so it doesn't make it easy to just keep having a go. We do try to do some ABA style work ourselves. Does anyone know how much it tends to cost? We would like to have a go with it for about 6 months while we are waiting for our appeal and then try to get it worked into his statement but obviously need to prove its for him first.

I'd appreciate any advice as we feel we are getting a bit lost in it all. We don't know what its possible to get from the LA which makes it hard to fight for the best for him. Because he's little and young they think anywhere will do for now until he can't be managed there.

Thank you,

I have contcated PEACH and they have been very helpful so far.