Aba therapy , how can my baby get this through local authority funding , is this possible?

[Rumaysa1]

Please help!
My son is 20 months not talking or interacting after many visits to the Gp I have finally been referred to have his hearing checked, Salt assessment and an assessment for autism however I called the centre today and was informed there is a 10-12 month waiting period for the assessment!
So I'm soooo confused as to what to do, I have contacted Peach who informed me that I could start ABA therapy with my son a few months before the assessment to find out if the therapy aids him in any way and if it does it would be evidence that could be submitted once the assessment is completed and a care plan is put together.
I'm not sure if I should start the therapy before the assessment , as I am aware the local authority does not like to fund ABA therapy and may say well let's explore other options first , I was advised to keep film recordings of my son from now onwards and after the 3 months therapy to highlight progress.

Please help I am just reading so many things on line , I don't know what would be the best move.

I am in tower hamlets london does anyone know if they are good when it comes to Aba funding or backing or has anyone received funding for aba in towerhamlets.

Stressed mum x

Hi rumaysa and welcome to the SN boards.

I dont have huge experience of ABA but didnt want your post to go unanswered.

As far as I know most people have to pay for ABA it can be very expensive. I know people on here who have managed to get some funding when their child has gone to school or who have managed to get their children into ABA schools.

There is a group of parents on face book I think called ABA4ALL who are trying hard to help.

Good luck

Refuse to accept the 10-12 month waiting list - write a complaint - it worked for us and got the waiting list down to 7 months. After the assessment we then contacted the Health Ombudsman who upheld our complaint. Our Freedom of Information request told us that many children in our NHS Trust were waiting over 12 months which is completely unacceptable.

I can't answer the question about ABA but without a diagnosis I don't think the Local Authority will fund it.

As far as ABA funding is concerned, be prepared to have to fund it yourself for a year or more and then fight for it at a tribunal once you have the data to show it is effective (that absolutely should not be the way it is but it often is). And join us on ABA4All, where we are trying to chnage this situation.

Hi Rumaysa

Welcome to this board. Members here are very helpful

I know a family in Tower Hamlets who have a fully funded program. I 'met' the mum on this board. If you want I can ask her if she is willing to discuss with you.

I agree with Dude's mum. Families usually have to fund the program for 6-8 months, then negotiate. And most end up in the tribunal(we did too).

I would also say that while you wait for the assessment, you could start the therapy. Also, keep calling the GP and HV to chase. A video diary will help too.

See you around..

SA

Hiya

Thanks for all your replies really appreciate it

Salondon... Pls could you ask if I could contact the mother in tower hamlets just to pick her brains and find out what the process here involves, I am really greatful for you help. My email is [email protected].

Do you think it's worth complaining about the length we of time we have to wait for an assessment for autism ?

Has any one managed to get a statement before their child's started nursery , it just because I have heard about a charity Caudwell children who do provide some financial assistance towards aba however a statement is required first. Can I get a statement for a child as young as 20 ?

Many thanks x

you can get a statement for a child at any age..

Sorry 20 months lol

Unless there has been a recent change your child doesn't need a statement to qualify for funding from Caudwell. It might be worth giving them a call?

Also if you want to find out whether other children have received funding from your local authority, you can do a freedom of information request.

Yes- chase your LA, yes- try & get the NHS to speed up diagnosis, yes- try cauldwell. But your ds has his best possible & most expert ABA therapist already with him 24/7- it's you, and you CAN do this.

You'll need a bit of training, and at times some outside assistance. Money and emotional support are always useful too. But there are lots of posters on here who have used ABA techniques with their dc & we will all help you

Does your little one get disability living allowance? if not, apply now, with the help of the cerebra guide

Your council can do a social services 'needs assessment'. Usually this results in a small amount of something called 'direct payments' to cover a babysitter for a few hours a week 'short break/ respite care'. And you can then employ a psychology undergraduate student as the sitter.

For the speech & language, don't just wait for the NHS- meanwhile call the ican charity's speech therapist helpline service.

But more important than anything else is to get started right now, and then gradually improve your effectiveness as you start educating yourself a little bit more. You need three thing to get cracking
1- to know something which your dc will find rewarding (it could be weird)
2- a desirable behaviour he can 'do' with help (eg reach for a cup)
3- your time, so that you reliably back up the action with the reward, and then as he gets the idea, gradually reduce the amount of help you're giving

The local library will most probably be able to get this book on inter library loan for you. Meanwhile, print off this and perhaps see if you can attend sessions run by this charity

This is my current favourite intro though. With behaviourbabe a close second (though I disagree with her point 8- I think anyone can do ABA- not on a paid basis for strangers, but for their own kid.

I do like peat-ni simple steps programme as well, if you're outside Northern Ireland you have to pay but (I think) it's worth it

You might want to consider not calling it ABA, if your LA is in the anti-brigade. Behavioural intervention, structured basic skill teaching, the Denver model... lots of possible euphemisms

If you can beg borrow or steal £174, a properly done PECS course will actually set you up nicely with a full-on ABA type approach for teaching basic communication skills. And PECS is so very well accepted, that even the most notorious refusenik LAs don't realise it's totally based on ABA

There is a tendency to over-identify ABA (applied teaching approach using methods drawn from the science of behaviour analysis) with its most famous offshoot- EIBI (early intensive behavioural intervention- ie a "programme" with expensive supervisors, tutors etc)

It's hard to get EIBI, because it's moderately costly, tends to be poorly regulated and private so quality is variable, and there's a lot of prejudice against it in the minds of non-scientist types like LA officials.

But it's not necessarily that hard to get an ABA approach done on the cheap. ABC charts are near-universal. Teaching self-help using chaining is uncontroversial. Any decent playgroup can quickly learn to do some incidental teaching

And if you've got that approach firmly established right now, and everyone agrees it's helping progress to some extent, then it becomes much harder to paint you as unrealistic when you later (hopefully) demonstrate much better progress when you improve the quality and quantity of ABA intervention.

We complained about waiting times and knocked several months off. What you have at the moment is a child who is showing limited social interaction and has a speech delay - you won't get ABA funding without a diagnosis or a statement. If you ask the LA for ABA funding because your son might have autism it will be easy for them to say no. If you have a diagnosis and medical support it will be that much harder to refuse you. You need to investigate the criteria in your NHS - some Trusts won't diagnose below a certain age.

My DS is non-verbal at 4, in nappies and has severe autism - we had to fight to even get the LA to assess him (they refused statutory assessment) and then fight to get him into a SS - and he has a diagnosis and lots of supplementary evidence and the Early Years Team at the LA were on our side.

I agree that you should apply for DLA - you need to say what needs your DS has above those of his peers - this can be tricky at 20 months so use the Cerebra guide.

Good luck.

I am really greatful for all your advice and info particularly meiraianeoalibi.

Ok so I will chase up the assessment and write a letter of complaint in relation to the waiting period, I will call Ican however they say there service is for 4+ but I will call anyway to get some advice. In relation to the statement which is now a health care plan I called serveral agencies today for advice parents advice center and Nas included and they said as he is so young and no assessments have been carried out the likelyhood of my son getting any provision is low, nd it would be better to get all the assessments completed then he would get a more complete care plan.

In the mean time I am contemplating applying for funding towards aba and getting some training myself via peach to work with my son however I odd not know how this will effect my sons assessment, will they disregard his behaviour at 20 months even if I have videoed it by saying as the Gp has many times he is young and may just be slow developer , hence why any progress through aba within the last year of waiting for an assessment is due to his own development, or could they after their assessment simply ignore any progress my son makes through aba and put so other form of therapy on his care plan, if this happens do I appeal the care plan ?
Or should I wait for the assessment see what they advise, after sticking to the care plan for a few months then start aba and hopefully if there is progress then request the care plan be amended to include aba due to my sons progress. Do I make any sense !? I'm so sorry just soooo many questions in my head.

I have looked briefly at the links and documents you sent thank you so much. I May join simple steps just to get familiar with aba and try things slowly,

I have also contacted portage who help children with special needs can include autism , have you heard of them?

With regard to dla , my son has no diagnosis, he is 20 months not sure what I would write in application.
For the direct payment do I need to be in receipt of dla as I thought that would help just get a break 1-2 hrs a week, I'm a single parent and have a older daughter that's 4, then I could have some quality girl time,

Sorry to go on.... This is all so new thank you every1 xx

Manishkmehta

What is BCBA and EP sorry I'm new to all this, lol

So do you think it's in my sons best interest to try start aba before his autism assessment , will this have any negative effect on the outcome for the care plan, is there a chance they may accept what I have to say if I believe there has been progress .

Thank you x

Rumaysa1 - you need to focus on getting the diagnosis and as your son is so young you will have to play the long game. Most Trusts do not diagnose at 20 months. You are unlikely to get any direct payments or funding for ABA until your DS has a EHCP - there are parents with children with profound physical and developmental disabilities who cannot access respite care. In our area there is a six month waiting list for portage and you can only access it through a referral from the paediatrician. And although both a EHCP and DLA are based on need and not diagnosis - it is easier to get both with a diagnosis. If you want to get a break then get your child diagnosed and in receipt of DLA - 2 year olds now get some free nursery care if they get DLA.

What would be the problem in applying for EHCP now? Yes, they'll almost certainly refuse to assess. You then file an appeal- in order to defend it the LA will then have to carry out some sort of very basic assessment. This gives you a baseline. Otherwise right now there's no useful data.

By the time your appeal date comes up you'll be several months on and you'll be able to compare any progress against the current baseline. You might well lose the appeal- but this will be because the LA will 'give' your DS some sort of provision so they can boast about it at Tribunal.

A year or so later you can apply for EHCP again, appealing again if necessary, eg if the LA provision hasn't helped. Obviously, if there is progress and/or agreement about needs & suitable provision by that stage, you & the LA will both be happy and you probably won't need the hassle.

For DLA get advice off Cerebra or contact a family. It's tricky but possible.

Direct payments- go to the children's centre and find a family support worker. Tell them truthfully how difficult things are. Feel free to cry. Ask for them to do a CAF (common assessment framework- it's a big long computerised form full of most questions) and request a child in need referral and a carers assessment.

BCBA board certified behavioural analyst ie someone who has a high level ABA qualification. Always private.

EP educational psychologist. Can be private or employed by a LA

The problem with applying for a EHCP now? It is because, as you point out, they will say no - tribunals are stressful and can be expensive. Our tribunal date was six months after putting in an appeal. If there is a 10-12 month waiting list for an ASD assessment then the OP will be in the same situation. At the moment all she has is some suspicions about ASD - this is nowhere near enough to get a EHCP, ABA or Direct Funding. It's incredibly hard for parents whose children have very complex diagnoses to get anything. I'm trying to offer OP practical and realistic advice - get a diagnosis, get DLA and then get access to a nursery place at 2 years.

JJXM I totally agree that Tribunal is very stressful, and you might well be right that OP is best to wait until her chances improve. It's not necessarily expensive-it is when independent expert reports are needed, and/or if you have a representative. A DIY job is likely to be harder, but it's almost free. And I totally agree that the first priority should be DLA- with a bit more money everything else in life tends to be easier.

Direct payments based on nothing more than suspicions of ASD are doomed. But with the undeniable developmental delay (not interacting/no speech), if family circumstances are already strained, sometimes ''early intervention' or child in need' social services (Who can be more helpful than children with disabilities team) can sort something out.

I'm wary of telling OP to wait for diagnosis before doing anything. The NHS can sometimes take years to make up its mind whether a dc has ASD, nothing much, or some other condition. And in some areas, that indecision is (cynically, I suspect) used to deny services.

The reason I'm playing devils advocate about some possible advantages of seeking an EHCP now is that the OP wants public funding for ABA. And to get that, in most areas, requires a series of 3 or 4 Tribunal appeals. I think people routinely pay way over the odds for appeals- lots of detailed and highly expert reports that Tribunal ends up ignoring in favour of something a smiling dinner lady- junior member of the school team says about a dc's behaviour.

I know someone who won lots of appropriate SEN help at Tribunal. No lawyer, no nothing- based only on the routinely collected data (stuff like child health checkups, nursery report)- with the LA's obviously made-up nonsense ignored and a lot of emphasis placed on her own very clear verbal evidence and a strong letter from the GP. It's fairly rare- but it does happen

Oh- also agree with you JJXM that nursery place at 2years is a priority- which is often easier to get after having a children centre fill in a CAF

I'm just basing it on my own experience of the statement system and what I have read on hear about others' experiences:

My DS is 4 - he doesn't speak at all; he doesn't feel pain, heat, cold; he is still nappies; doesn't sleep at night; only eats three things. We applied for Statutory Assessment with portage reports, early years reports noting his development, paed reports, SALT reports. The LA refused us because they wanted to see how he developed. We had comprehensive documentation and they still said his needs could be met at School Action Plus. I don't want to depress the OP but she needs to know that it is very hard and as her son is not in an educational setting yet there will be little evidence. I don't want her to be like me at the refusal of SA where I broke down in tears because of the shock that my DS with such significant needs was being turned down.

We did all our appeals and complaining ourselves but not everybody has the skills or time to do that.

OP please self refer to a Speech and Language Therapist - you can circumvent the GP and a SALT can refer you to a community paediatrician. Get DLA, get a nursery place and take it from there. And above all good luck