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starting ABA: how much to tell LA?

8 replies

theDudesmummy · 12/05/2012 12:03

We are in the rather exciting position of starting our home ABA programme at the end of this month for our DS (aged nearly 3, ASD, non-verbal). We have our consultant coming to do the first training day with our tutors (who all seem really fab) next week, and I am feeling very positive after a very exhausting time of getting everything set up.

One thing though, I am not quite sure what to tell the LA. We only got our NHS diagnosis two weeks ago (although had a private one quite a while prior to that), but since then I have had a call from a Family Support Worker at the disabled children's team at the LA, asking if we would like some "support" and if they can come around with leaflets, helpful advice etc. I did not know quite what to say as I had just that morning found the final tutor for our 30-hour ABA programme and I am not sure what they are going to be able to offer! I kind of fudged it and said i was busy and would get back to her.

I don't really feel I can just lie to them and leave out the massive issue of a practically full-time programme that is going to be running daily in our home! But some on MN have advised that it is not good to tell the LA too soon about starting an ABA programme. Not quite sure what to do! Any advice?

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AgnesDiPesto · 12/05/2012 12:49

Disabled children's team is part of social services, they will be looking perhaps at leisure opportunities or respite (usually in form of direct payments). This is different to the Education Dept of LA - it is the LA SEN Officers who will foam at the mouth at the thought of ABA.

I would meet them and see what it is they are offering. Having a home ABA programme is no different than your child being in FT nursery. You don't have to tell them if you don't want to - they may well pass the info to SEN team.

Their job is to make sure you can manage as a carer and that your child can access activities they will not be looking at education generally.

Things you might consider would be a sitting service so you can go out, they may advise on childcare (which you can just say is not needed), accessing activities (usually few options for under 5's - usually they run holiday clubs for school age children) etc

What we get from disabled children's team is:
3 hours a month free (specially trained) baby sitter so we can have a night out as a couple
12 hours a year sitter so we can do voluntary work / go to meetings
2 hours per week direct payments for someone to look after DS3 (ASD) while we take DS1 and DS2 out (we save this up and use a half day etc so we can do activities DS3 can't tolerate and DS1 and DS2 occasionally get to do 'normal' family things) - DS3 would not be eligible for overnight respite but in any event they would not pay for that until age 7 here.

Some families get a 'short break' which is a leisure activity for the disabled child e.g. 1:1 swim lessons, riding etc

So generally speaking it is more about support for the parents, siblings, leisure than education for the child. Trying to make sure you don't collapse as a carer / divorce / crack up and end up costing them more

A family support worker is not usually a trained social worker so I would expect they may just be signposting you to other things e.g. welfare benefits, support groups etc

If you get DP you can the money for ABA tutors - just call them respite carers - which they are! Its only about £8 per hour though so won't cover the cost

In my experience most LAs don't offer anything for under 5's

I probably would not tell them about ABA if you don't want the SEN officers to know yet. But actually most social workers are in favour of intensive early intervention because if children don't get a good education then it is social care that ends up picking up the bill when they become adults.

Contact a Family has good leaflets about social care you can download.

theDudesmummy · 12/05/2012 14:33

Oh that is all very helpful, thanks. I do feel rather uncomfortable about keeping people in the dark about what is really going on, when there is so much going on. I don't know if all those benefits/services (DP etc) that you mention are means tested, if they are then we would not be eligible for them. I have already applied for DLA, as was advised by the paediatrician at the autism assesment clinic.

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AgnesDiPesto · 12/05/2012 14:38

direct payments are not means tested for a disabled child.
Like I say I doubt there is much for under 5's you may be lucky to walk away with some leaflets!

theDudesmummy · 12/05/2012 14:50

How does one apply for direct payments?

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StarshitTerrorise · 12/05/2012 16:20

You can just say for the moment that you have sourced and hired some playworkers to work with you.

BUT be mindful that they might assume then that you can afford to fund your own respite etc.

bialystockandbloom · 12/05/2012 19:28

I wouldn't mention it either, but if they do ask if you are doing anything to help ds yourselves, you could say you're doing some behavioural playtherapy, and just leave it at that.

It shouldn't make any difference to anything they might offer. But you're right, there may just be a possibility that they'll mention it or it'll be jotted down in your notes.

But tbh I doubt they'll ask anyway! And as others have said, the 'support' will probably just be a few leaflets.

agnes the support you get sounds pretty good! We have been offered, erm, nothing.

PipinJo · 12/05/2012 22:57

This reply has been deleted

Message withdrawn at poster's request.

theDudesmummy · 13/05/2012 09:06

I already know that our Local Authority is no longer funding ABA home programmes (although they have in the past), so we are not expecting that to be funded anyway. We have accepted we are going to have to pay for this ourselves. But it would be nice to get some help etc, however small! However, they are not going to believe, from our personal circumatnces (my job etc) that we cannot afford some "playworkers".
I am tending to telling them we are doing some ABA at home but giving them no details about how much etc.

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