Living on Planet Poor...rant, no need to respond!

[Eloise73]

I sometimes think we are the poorest working people in Surrey. I have spent the last week since finding out DD is autistic ringing around trying to find out about early interventions and getting her the help she needs since we were told that most things she needs on the NHS have huge waiting lists. Shocking...

So I ring the charity PEACH this morning to find out about ABA and say, right from the start, I cannot afford a £20k programme a year, we are not bankers etc, we earn slightly over the national average which, in Surrey, if you're not on benefits, is not a lot. We don't own a house we can sell, our savings are minimal and of course will all go towards our daughter's treatments, and we're lucky enough to have jobs given the massive culls in our firms over the last 2-3 years.

So the woman at PEACH tells me that its entirely possible to fund a programme for around £7-8k if you do a lot of its yourself...ok...where do I find £7k?! Seriously? It was just deflating :(

I'm already starting to feel a bit like we take 3 steps forward and 2 steps back, a lot of effort and not a lot to show for it. Am so very hopeful the Intensive Interaction we'll be doing with Gina Davies will be enough for now for DD. It breaks my heart that we can't just jump in and get her everything she needs.

I just feeling like having a huge whinge and small pity party this morning :(

"So the woman at PEACH tells me that its entirely possible to fund a programme for around £7-8k if you do a lot of its yourself...ok...where do I find £7k?! Seriously? It was just deflating"

They're living in a different world really, aren't they?

I totally understand your frustration. There's a lot people don't agree on when it comes to autism but the one thing that most do agree on is that early intervention is key. I really wish the responsible authorities would start treating it as a more time critical condition. Good luck in your pursuit - although if you haven't already done so, do spend a few days reading the archives on this board- there is a wealth of information and a lot you can start doing at home right noe (Hanen and Floortime were my lifesavers).

Don't fret, there are a lot of us in the same boat and there are also various sources of support.

There is a charity which will fund ABA I think - the other ABA parents here will prob know which one.

Do you get DLA?

Also Cerebra do grants for SALT and other items, you might be eligible for Family Fund too (not for therapies, but other items or holidays).

Hi Eloise73,

Caudwell children help fund ABA. I had funding. I gave up my job and did the ABA for a year with the consultant fees being paid for. I went on to win ABA at tribunal.

It can be 20 steps forward:)
It can be done on a shoe string...second hand shops, make flashcards yourself etc,

I jumpe in and starte ABA within 2 monts of diagnosis...I'm single mum no help etc it can be done:) Anything you ned help with we are all here to help:)

The Cauldwell Trust sometimes fund for ABA, I think

Eloise - I did get your CAT, and will reply - trying to formulate my thoughts!

It is really hard.

We were very lucky in being able to afford to fund ABA (albeit part time), but there are a lot of other things you can do as well, which are not so expensive (not saying don't try ABA - it has definitely been the best thing for dd1)

so far, with dd1, we have:

done some Hanen work (DIY at home stuff. read the books, put it into practice)

Floortime -little did I know it, but this was the way I was playing with dd1 by instinct. I also did an online conference thing, which was really good - cost about £250 iirc

Dietary stuff: do read up about this. it has been a relatively simple lifestyle change for dd1, which has reaped massive rewards. lots of info on here baout gluten and casein free too.

BIBIC - have you contacted them? they were brilliant for us, and theses days cost £50 admin, I think, plus of course the cost of staying nearby. full 2 day assessment rundown of everything, and they give you a home programme to follow too. really helped us with some sensory issues, and was fantastic to have someone listening, and properly observing dd1.

Wow, thanks guys, I have lots to look into this weekend!

I have the DLA forms downloaded, just need to fill them out now. Got the Cerebra handbook on how to fill it out, its so helpful!

The woman at PEACH mentioned the Cauldwell Trust but said it didn't fund the full programme, just helped. To be honest, we'd be lucky to have £250 a month to spend on therapy etc so we have to be very careful how we allocate that amount. We thought it was alot last week LOL!

I don't know how I would have survived the last couple of weeks without mumsnet to be honest :)

Unfortunately Caudwell aren't giving ABA grants atm (well they weren't at easter) - apparently their donations are down by 75% :(

It is so fucking hard - the financial stuff had me in despair when ds was diagnosed - we knew he needed ABA & we knew we couldn't afford it. But somehow we are ... I am in no way suggesting that anybody else could/should/would think this is a good ides - dh & I think we're totally insane.

(lots of financial details that I probably shouldn't share & no doubt someone will use as an example of how we're scroungers etc).

After two redundancies since diagnosis dh now earns 24,500, we also get HR DLA, CA, CB & CTC (even with this disabled child extra bit it has just gone down by £80/month). Our parents fund 4 consultant visits a year (about £2000) between them - & god are we grateful for that. After the mortgage, council tax & electricity etc (we've managed to get dh's work to pay for our broadband) every penny goes on the ABA. I do cleaning/babysitting etc when I can (way under the allowable hours for CA before anyone gets arsey).

We've sold our car, ebayed everything we can, we don't drink, smoke, have new clothes, ever go out. The kids eat okay, we live off baked beans. We've stopped paying more than the minimums on debts we had, if interest rates (we've moved to interest only mortgage) go up we will be screwed (can't downsize as we have 3 kids in tiny two bed terrace, rent would be 4x our mortgage). We've cancelled all bar one (swimming) of the dc's activities & don't buy presents for birthdays etc.

We started with 6hrs/week & have squeeze the budget until we've managed to get up to 20 hours on average (tutors earn between 8-15/hour). I considered putting baby dd with a CM & doing more of the hours myself but I also HE my 9yo dd & she's had a shit time too, they need their mum around. If something happens (the washing machine died last month) then we have to cancel sessions. We have no savings & no pensions. DS doesn't get OT or private speech therapy, he doesn't do any of the nice things that DLA could pay for - horse riding/swimming etc - & I worry about that a lot.

Many families who do ABA are (by our standards) really wealthy & we have run into the situation of a couple of prospective tutors really taking the piss - you know ABA as a license to print money - I think that they have just spent too much time around people can afford to give them £100 to take the dc to the cinema & toy shop etc. I've met some lovely people too - local parents who'll pass along toys & reinforcers, meet up for playdates etc (& not those dreaded ones you see advertised ... 'must be HIGH functioning verbal' )

The fact that it won't be forever is pretty much all that's keeping us going - though I think the finances will collapse before ds gets to the end of the programme - but we'll deal with that when it happens. ds is making progress & when he misses session you can really tell - his language & engagement regress. imo some hours are better than none (as long as it is good quality) & we spoke to three independent providers before we found someone who was willing to work around our financial situation.

{argh not sure if I should post this - feels like over sharing & would hate to come across as well we're doing it - because we aren't really surviving & I worry constantly that we are being reckless - wanted to sympathise really it is an utterly shit & unfair situation}

I'm just as reckless as you, phlebas! I had to get DS the right provision to meet his needs, and threw everything I had into that fight. I have cut expenses down to the bone, drained our meagre rainy day savings, so we now have nothing, maxed out on credit cards (I always used to pay off the full balance every month) and took out a loan. The attitude I had was that it was the rainy day in my life that justified it and it would make a huge difference to the rest of his life.

It's paid off, as the LA are now funding it - knowing that it was a short-term fight made a difference for me too.

I recently got an account of the costs incurred over the past year which made me wince. If I'd been told at the start that it would cost that much, I would have just said that I didn't have access to that much money. But somehow I did raise it - it really is amazing how resourceful you can be.

I don't know anything about ABA but i've followed these sort of threads in the hope of learning more about it.

I can't help thinking that phelbas is right when she said that some think "you know ABA as a license to print money".

Wih cosultant costs of £2K for 4 visits there is something seriously wromg here. Or am i missing something [sceptical]

WetAugust, our (sort of ex, now that dd1 is in an ABA school) consultant charges £500 per visit.

For that, he is with us from 9am until about 3.30/4pm, so 8 straight hours of fully qualified, individually tailored advice. No waffle, no bullshit, just 8 hours of dealing with whatever is next in the programme - sorting out niggles, planning the next steps, training up tutors (whether us, or additional hired tutors). He obviously brings his expertise and training to the role too.

He is also available in between visits, for email and phone back up.

when dd1 when through her sleep wobble (screaming for hours each night, for no discernable reason that we could fathom - took us 18 months of slow, hard work to get her through it), we were on the phone to him every 3 days or so, for at least 45 mins each time (this is evening calls), talking through what was happening, what we were trying, where to go next, etc.

Reports written as necessary for no extra charge, too.

It is still bloody expensive, but when you put it in context of what you get per £500, it is a lot.

Any private practitioner costs a lot. we currently pay nearly £100/hour for dd1 to have Sensory Integration therapy, and have previously seen SALTs that cost the same - it seems to be a professional price, iyswim? (althoguh I wish it weren't!)

Thanks for explaining that silverfrog

What qualifications do ABA consultants have? Are they SALTs or such like.

Just interested as i know nothing about ABA.

ooo, err, now you've got me

hang on, will look it up (been years since I researched it!)

but basically, they are behaviourists. I know moondog has just done an MA in ABA, but there is an industry qual, too.

£2K for 4 visits?
Jesus, who charges that?

Some of you know that I and many others are hard at work integrating ABA into everyday practice in the NHS and LEA. We are very unusual.

Many govt. workers are indeed suspicious of ABA as they think it is a license to print cash as you say. That is one of the reasons I think our efforts have been well received. Nothing in it for us beyond satisfaction of seeing it change lives for all involved. Doesn't give me more £££.Just gives me a whole heap more of work.

I'm so sorry Eloise. It's shit isn't it?
There is however no need to assume that the people already working with your daughter are not up to it.

Just remember, everything needs to be SMART.

Specific
Measurable
Attainable
Reelvant
Timely

(This is a commonly accepted way of working. Additionally, always ask the following questions and be sure they are answered.

What did you teach my child?
How did yuo teach my child?
How did you measure my child's learning? (VITAL)
What's plan B?
Do the goals cited lay the foundations for more complex skills?

These are all utterly appropriate questions.If they can't be answered by the professionals working with your child about each and every thing they do with her, they are not doing thier job properly and you then have room for manoeuvre.

this page explains the various routes fairly well.

It is important, as always when choosing services, that you look up references, career history, general attitude within the industry to that person, etc. there are always charlatans, whatever field you work in.

and different consultants/providers place a different emphasis and importance on which areas to work upon. it is important to find a provider (whether independent, or a full provider like Autism Partnership) who fits in with what you want, and, basically, isn't just in it for the money.

MSc actually Silver.

I am offered £500 a day to do work privately so yes, that would be acceptable.

Standard qualifications to look for in a consultant would be an MSc or PhD and a qualification as a BCBA (Board Certified Behaviour Analyst) which I'm going to do in the next few months.

I wouldn't go near anyone who iswithout or isn't actively pursuing these qualifications.

Interested in your AIT Silver. Seems an unusual choice for someone committed to ABA I have to say.

What do you make of it?

well four visits is 36 hours plus travel - compare that to a private SALT/OT/EP and it is extremely good value (approx £50/hour - a private SALT here charges £35-45 for half an hour, you can't even begin to compare the outcome of a consultant visit versus any other intervention I have ever participated in) - in fact it is the one cost that I do not begrudge in anyway at all. :)

It won't be unregulated for long.
Pretty soon anyone without BCBA (or BCABA) -associate behaviour analyst- will be dismissed out of hand.

BCBAs also want to joing Health Professional Council (HCP) which will happen soon. SALTs, OTs and others arem embers of this. It will be a major seal of approval.

silver I'm fairly sure we have the same consultant - we spent over an hour on the phone to him last night to discuss this most recent poo episode (which is typical - we speak to him most weeks).

I think £500/day is perfectly reasonably actually - £1500 for a couple of hours I would bulk at (EP).

sorry, moondog influenced by my Arts background there

I did think your surprise at £2k for 4 visits was odd, tbh - I am assuming that phlebas was talkking about consultant visits.

dd1 currently has SI, not AIT. still wishy-washy in terms of evidence, yes I know. But tbh, I don't rule anything out.

we took her to the OT for assessment prior to tribunal - he also does the SI (looks like a lot of jumping around at soft play, and being hurled around on swings to me!). we decided, following that, to give it a go, and see. during the session, he also works on more conventional OT stuff (fine motor skills, etc) so we knew at a minimum dd1 would be gaining skills there.

following dd1's first session (first "proper" session, post assessment), we found the following:

dd1 (next day) walked around a shopping centre (a new one, so unfamiliar environment), whereas previously she would have galloped/whooped/shouted ehr way around.

she listened when we asked her to wait, and followed (basic) directions as to where we were going next (eg "going into the nappy shop now (Boots)" or "need to go downstairs to the supermarket")

she also listened when we asked her to mind out for other shoppers walking too. she didn't always move out of the way, but she did take note, and stand still so they could pass her safely.

she was able to listen when we told her we would not go on the escalator (phobic), and instead of shrieking and hurling herself to the floor, she managed to walk past it (albeit with fingers in ears, repeating "it's ok, it's ok") - I would previously have had to carry her past (and even then she protested)

the list goes on, tbh.

we were absolutely gobsmacked.

all anecdotal, of course, but it'll do us, and meant we were convinced enough to give it a good 6 months or so (not on a sign up or anyhting, but thought it good enough results after 1 session to give it a fair run)

sorry 'balk'

Just, I haven't seen any compelling evidence for it although I am not posting this to be inflammatory. (I said AIT but meant SIT.)

I am assuming Silver is finding it useful however and am interested in knowing how.

I am keeping an open mind on it.

I thought you did, phlebas - he is really excellent, isn't he?

he is consultant at dd1's ABA school too, so even though we don't have home visits anymore, he is still involved (was fairly instrumental in us choosing that ABA school, tbh. we knew the style suited dd1 and that she would progress)