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 :(

God, have read back my last post and it sounds really snippy - not meant that way

Yes quite, Star.

School doing well with getting dd1 to pick out tunes, etc, but I am convinced there is probably a better way.

I remember talking about it with lingle a while back, and having the same dilemma then.

Keyboard all the way at the moment - don't think dd1 would have the motor control for anything else, tbh.

But yes, interesting queries.

I once saw a documentary on some lady who reckoned she could tell which instrument suited you most by looking at you - and she had a fair amount of success drilling this out with children with no prior music experience. She would suggest an instrument, and off they went, completely naturally.

Was very interesting. But can't remember much else about it (saw it about 15 years ago!)

No, it didn't sound snippy.
I was thinking it through as I had a run because it is something I have thought about a lot. I am not a musician (would dearly love to be as music essential to me) so am limited in what I can offer but as James Partington says, with ABA, you can teach anything, whether or not you know about it (he taught football to his dd's group despite not knowing about it).

I have a ither thing that I think dd would take to now althoguh I bought it a while back. A piece of paper slips under strings, showing what strings to pluck in what sequence to get a tune so it would be reinforcing straight away.

I did have a xylophone with bars numberd that worked in similar manner but one of the kids wrecked it before we got down to business.

These would be a start. Music as in reading music shouldn't be a problem thoguh as it is a symbolic process like reading which is pretty easy.

I would achieve fluency on small discrete pieces using Precision Teaching (which is basically repeated timings of a task to add another parameter to measurement.)

What do you lot reckon to above?

Yes, but nothing gets done without the correct tools. It's a foundation skill to get this right, just as being able to have a mental representation of numbers is essential to go further with maths.

Why does this go against your instincts?

I'll butt out as this is all going over my head

but thanks for explaining a bit about it.

I am truly shocked at the amount of money involved. Seriously [shocked]

Wet, you have to remember thoguh that was in on offer ordinarily costs a fortune too. Quite usual for a child with SN to have 10-15 people involved. They all need paying, to say nothing of petrol, pensions and so on and so on.

Frightening amount to consider especially if those people don't work for services that don't work well together and are lax about pursuing evidence based practice (which is a challenge when you get no time or money to do much training. I think my budget for btrainnig last year was £25 for a year. Really. I have paid for all my additional qualfications myself and pursued 90% of the work and study in my own time. Not a complaint, just a fact.)

The money thing is shite. The only ABA round here that is ever paid for other than by the parents is won through Tribunal. Friend of mine won her ds's this way and is now hoping to claim back all the ABA money she had to pay initally by suing the council.

SIT was very helpful for J - he had about 12 sessions through NHS OT and really really enjoyed it. He had 2 OTs and they also worked on following instructions - a real problem area - while doing the therapy.

Confused though - HLTAs do not get paid £27k, Starlight - did you mean 17? Maybe £20k, tops. Most new teachers get paid below that.

Oh, OK, with the LA having to pay towards pension etc.

Agree that the difference is paltry and they shouldn't be arguing it; I guess they would argue that most Statemented children wouldn't have a HLTA (would just have a TA), or did they agree to that?

Wow I really am amazed at the amounts mentioned - simply put I am not sure we could do ABA although we keep getting told that dd may not need it. We pay 100/hr for private SALT who specialises in autism she came today for first time and we loved her. she taught us how to get started on intensive interaction. I guess we'll have to see how it goes these next couple of months.
PHLEBAS thanks for your honesty and frankness, its inspiring to see how commited you and others are!
I think as well added to the pressure is the knowledge that the next 2.5 years are so important for her development and potential and its like having a gun to your head...I swear the NHS, LEA's etc go purposely slow God knows why.

They don't go purposely slow.
To be fair, you must remember that each SALT for example may be responsible for over 100 kids, each scattered over a wide geographical area. Each kid need liaison with parents, teacher,s TAs, SWs, maybe also physios, OTs, Ed Psychs, Clinical Psychs, specialist support teams.

Add on the travel, the paperwork (tonnes of it) the IT work ,the departmental meetings, the annual reviews, the (paltry) continuing professional development and you can see how each person is stretched to near breaking point.

Tonnes of SALTs leave the profession within the 1st few years. The know what they are able to offer is often pretty crap and it frustrates them enormously, combined with relentless pressure from schools, unhappy parents, managers chasing targets and so on.

I feel that every working day is basically a fight and a race against time, cramming sandwiches down in laybys or at the wheel of my car, much as I love it.

SALTs and others often feel resentful about ABA consultants and point out that they could also offer a vastly improved service if dealing with maybe 10-15 families as these are, all programmes staffed with peopel who have chosen to be there.

Vastly differnet from the SALT set up where many people actively choose not to engage with you. A huge part of the job is winning people around and launching massive PR offensives at every juncture.

It's exhausting!

I do understand where you're coming from, I wasn't meaning the actual people doing the work, I mean the institutions themselves. I once temped years ago for the NHS Executive, what a useless bunch they were, meetings upon meetings, ordering in catering for those meeting (mostly internal btw), complete waste of money and resources.

I can see why SALT's leave the system. The SALT that was part of our daughter's assessment, when asked if she would be working with our dd) said she was starting a new job in September at a Catholic school - so I asked if it was private and she said yes. So another one gone. We have a huge waiting list in my area because there aren't enough SALT's and I just get so frustrated at how inefficiently the whole thing is run.

My health visitor had a rant the other day about how poorly managed the resources are, shame they don't let the frontline people control the money, they'd know where to better spend it.

I fund a small ABA program (very small as in 4 hours a week + monthly supervision) out of DLA, Carer's Allowance and Child Benefit and hopefully soon some tax credits. I may try to get more money from Cauldwell to go up to 10 hours a week. I think any amount of good quality 1-1 ABA is a lot better than none.

Starlight Thanks for that, I did read the original Catherine Meurice book, didn't know she'd written another one. Will look into that.

Someone on ebay in the U.S., a SALT, has a dvd/cd set you can buy for around £30 with postage which teaches you the basics, how to do the discrete trials, how to keep track with the forms etc, may consider getting that.

We saw Gina Davies yesterday evening, I cannot tell you what a comfort she was. We got started on the Intensive Interaction and our DD responded really well right off the bat which was great. She told us to hold off on ABA for now as dd seems advanced in a lot of things and her reciprocal communication and rigid thinking are her main problems.

I have been in contact with Ruth for a couple of months now, she is most generous with her time, very knowledgeable and I do hope that we can work with her soon but for now our hands are tied and we can just barely afford Gina.

Come on lottery...

The whole thing needs to be rethought.
What is no longer acceptable (imho) is hour long 1:1 clinical sessions with children with mild phonological or language issues.

Huge swathes of people wanting SALT need to be turned away because with resources as they are ,adminsitering to them and thier basically non existent issues can't be justified.

meanwhile we can turn our attention to those who really need help, such as the ASD population which of course is growing at a frightening rate and if mismanaged creates emotional, educational, social and financial chaos that we all end up paying for.Far better to sort it out now. EIBI has a 'success rate' on a par with CBT-worth knowing that as very few peopel would argue against CBT knowing how effective it is. That is direct from the mouth of someone who really knows and who was heavily involved in SCaMP project, Professor Richard Hastings.

I am one of those who deosn't think we need more money or more SALTs or more SN specialists. There are already too money, all busy justifying their existence (Parkinson's Law: an organisation starts up with an agenda but eventually its agenda is its perpetuation.)

It all needs to be much more streamlined and SMART with set episodes of care (which to be fair do happen in many places) with specified aims after which SALTs withdraw.

Parents have to accept also that they have a big part to play in this-they can't sit back in learned helplessness and let someone else do it all for them. (I follow my own example. I do some work with both my children-maths, reading, writing, handwriting, general communication work every single day of the year. It doesn't take long because I use Precision Teaching which is very very fast and effective and of course involves keeping data.)

I don't necessarily think the peopel who adminsiter the clinical work should run it too. We need peopel to be tough and make tough decisions-hard to do when emotionally involved with families and schools as, however hard you try, you do get. One very good SALT I work with refers to it as being 'kennel blind' when you are like a guard dog protecting 'your' patch and 'your' kids in a way that may not make good clinical or financial sense.

I have a friend who was offered weekly 1-1 SALT for her daughter - the only reason being she is being brought up bi lingual and her English was the weakest language (at age 3). My friend turned it down but it was hardly a priority in the first place as NT children can easily pick up two languages !! Needles to say, my DS (ASD) has never had or been offered 1-1 SALT !