What is a recognised programme of desensitisation?

[alison222]

Following on from my trying to be prepared for a meeting with the LEA thread, I need to know what would be a suitable programme to help DS with his sensory issues?
I suggested ABA or CBT. The LEA say they are not recognised programmes. So what would be exactly????

The LEA OT was useless and said DS had to" get used to them" and "learn to self regulate" but didn't offer any way to do so FWIW.

The LEA are saying that ABA or CBT could not be used as they are not recognised programmes of desensitisation for sensory problems.

So my question is what do you think they could be thinking are recognised programmes for desensitisation ( noise smells etc) because if they are putting it in the statement I want to know if such a thing exists.

A programme designed for your child by a sensory trained OT, including things like a daily sensory diet and sensory management techniques and teaching ds to independently regulate his own sensory arousal levels.

Have you had an assessment done by private OT?

this and this

and what claw says

"The LEA OT was useless and said DS had to" get used to them" and "learn to self regulate"

How did she reach this conclusion? Did she do a full assessment? If not, you could ask how she reached this conclusion without doing a full assessment and ask for one?

Unless she knows the full extent of his difficulties how will she know that he will just get used to them or is capable of self regulating.

The LEA he was a she. No there was not a full assessment done by him. He was mainly concerned with telling me he had seen children much worse , and concentrating on fine motor skills.
I have just had a full private one done and it says that he needs programmes but does not give them.

devientenigma neither of those therapies look like something an LEA would fund sadly.

Sorry i was being sexist there assuming he was she!

If an area of needs has been identified the NHS OT should provide the programmes, based on private OT findings.

I didnt explain that very well and you are probably aware of this anyhow.

This is what happened to us, i got private OT to do an assessment, things such as handwriting, eye hand co-ordination, position in space, copying, spatial relations, visual closure, visual motor speed, gross and fine motor skills, postural tone and joint stability, body awareness, motor planning.

My private OT report recommends things such as

Direct input from state registered OT with sensory training.

OT should provide a sensory diet and training to staff etc, etc.

I then self-referred to NHS OT using the private OT assessment, who declined the referal, stating 'understaffed only dealing with most severe cases etc'

So i am now back to LA, who should provide the funds for a private OT to do what previous OT recommended. iyswim!

Ah Claw this sound better - my problem is that the HS have not discharged him, just they seem ill equipped ( at best) to deal with sensory issues and seem to focus on only the physical. I wondeer how I can get this part of the recommendation enforced as it looks like the LEA are going to accept the need in the statement - but actually getting the OT designed programme may be more of a challenge.

alison our OT service provides them, a few of them are accredited for TLP and are listed on the website.

I suspect the NHS OT is not sensory trained, hence only deals with physical? You need a state registered OT with postgraduate sensory integration training to implement/design the programmes recommended by your private OT.

Hopefully the NHS OT wont have the training or the resources, then the LA will have to fund a private OT who does. In my experience of NHS OT's they play down difficulties to lighten their work load.

You need an OT to say that is what your ds needs ie an OT with sensory integration training, im surprised your private OT didnt recommend this?

However, you can still work with that, if the LA say they do not have an NHS OT with sensory training (it should be common sense that a sensory trained OT deals with sensory issues and that is the area of need for your ds), the PCT should fund another borough that do.

No doubt the other borough will decline the referal on 'understaffed, only dealing with most severe etc, etc'. So back to LA, to fund private sensory trained OT to design/deliver the programme that your ds needs. Also means that your ds MUST have a statement, as they cannot expect school to fund this.

So you could start by asking what training the OT has in sensory issues?

I would be asking why thye think ABA could not be used int his way - concrete examples, from them, as to how it is not applicable.

from my experience - dd1 is at an ABA school - ABA has been used very successfully to desensitise her to animals (dogs in particular, but all animals). she is phobic, and used to scream, wet herself, and try to climb up me to get away if she even saw a dog (whether on a lead or not) on the other side of the park.

she now can walk past dogs on the street, reasonably calmly, can stroke small animals (rabbits, guinea pigs, etc) and goes riding with her school. it took time, yes, but it is possible.

imo, ABA is an excellent tool for desensitisation - take a baseline, add a target, and outline the minute steps along the way that will be needed to achieve the target. what on earth could be not suitable about that?

Sensory Integrated OT also good - dd1 did a stretch of that about 18 months ago, and it did work wonders for her general sensory difficulties, but was not targetted at any sensory need particularly - still achieved amazing results for her though

Hi Silver, thats interesting, im fighting for literally the same thing as Alison at the moment.

To get the LA to approve ABA, wouldnt i first have to apply the ABA and show that it is successful? or is there another way of doing it?

we did the double whammy of:

running a home programme, and keeping data (this was when dd1 was about 3, so it was on easy-to-test stuff like numbers/letters recognition; increasing vocab etc - standard pre-school stuff, to prove she was actually able to learn)

then we put her into LA approved (and ultimately paid for) ASD pre school provision. where she floundered, and failed. after a year there, they could not demonstrate that she knew the stuff we had taught her the preceding year, let alone anythign new.

then back into ABA, and the obvious leap forward was striking, and could not be argued against.

this was all on concrete things, rather than the more difficult to track (not impossible, but certainly more subjective) emotions/anxiety etc - dd1 absolutely had sensory issues and a LOT of anxiety, but we concentrated on things we could absolutely prove, and that the LA (and their provision) could not demonstrate at all.

interestingly, the ABA structure - with tiny steps, and errorless learning (an approach that has always been essential for dd1 as her confidence is so low) went a long way to reducing her anxiety without any specific targetting of it - once dd1 was more comfortable ,it reduced of it's own accord.

once she was secure in her first ABA school, we added in the desensitisation programmes for a couple fo things that were really making life difficult, like the animal phobia, and also a water issue she had.

her current (ABA) school are now working furhter on the water/fluids issue, and desensitising her to the feel of eg liquids on her lips (she cannot drink from a cup becuase she cannot bear anything on her lips at all - she would rather stop drinking, and has done so in the past)

thw whole premise is to find her comfort zone (wherever that may be - eg when she first went riding, she would not get out of the car. this was fine, and taken as the place she was to work from, iyswim) and then add in steps in tiny little stages - taking her to the edge of her comfort zone, but never far enough to tip her into panic. a little discomfort (and I really, really mean tiny little bit) is good, as it means she is having to deal with it, and can begin to tease out her emotions, and talk it thorugh etc. so in the riding example, the first goal was to get her able to go in the car to the stables, and sit happily, without being worried about anything. once achieved, they went ot the stables, stayed in the car ad opened the window a bit, so she could hear and smell etc.

then the door open.

then the door open and her tutor got out and came to stand by her, chatting.

then the door open and chatting to one of the RDA people.

all the while watching the horses from afar, talking about them etc.

then the slow process of getting her out of the car - slowly, slowly, no expectation of even going near the horses. the whole target and expectation at that point was the next tiny little step. even if she achieved the next step really easily, there was no 'oh, brilliant, let's rush throught he next bit too' - jsut lots of praise for work well done, and then back to school.

it did take months (with one weekly visit), but it was all done at her pace, and she was taught (by going through the process, rather than explicitly) how to self-calm when she was gettign a little bit uncomfortable. because she was secure in the knowledge that it would nver get too uncomfortable, as she trusted ehr tutors implicitly. and so she knew she would never be aske dot do somethign she couldn't deal with, iyswim.

Ok so I have 2 separate things to sort then. The first is to ensure the correct wording in the statement. - I think that this is a problem as they are only currently agreeing to "a programme recommended by the OT" and I need the wording to show that it is an appropriately qualified OT.
The second will be to find out whether any of the HA 's OT's are appropriately qualified for this. Hmmmm.
The meeting with LEA is week after next. I wonder if I can find out about the HA's OT's qualifications by ringing them?

The ABA is really interesting, although I know next to nothing about it, from what you have written I cannot see how it could not work really.

'all' that ABA is is a bit more complicated version of what I have written - pick a target (whether a social one, or an academic one); take a baseline. then work towards your target (which is SMART, naturally ) in tiny little steps, taking data all the way about what works, what doesn't, and everything in between.

it is 'just' a system of moving methodically towards a goal, with evidence taken to prove efficacy (or sometimes, it proves somethign is not working, in which case the approach is changed, or the steps broken down further). a variety of teaching methods are used to achieve this, much like in any classroom.

dd1's school recently got ofsted-ed. they were given outstanding on everything, including pupil outcomes and progress (bear in mind this is an ABA school, and only the severest of the severe go there, generally speaking; in her pre-ABA days, we were told to accept that dd1 would never learn at school ) except for one admin area (where they stil got good) - the problem? too much data, apparently, and it could not be accessed easily (by the inspector, one assumes - given all the staff and teaching was rated outstanding, I assume the staff have no problem reading the data and using it effectively ).

Alison if you have a report from him, it might state his qualifications, if not yes ring and ask.

Im assuming that ds has sensory difficulties and these have been identifed as such, if so an OT without sensory training, isnt qualified to design and deliver a sensory programme.

You already have your OT recommendations, your ds will not be re-assessed by another OT. An OT would just follow what recommendations you already have. So all you need is an OT to design and deliver the programme.

I would also check who is supposed to deliver the programme, provide training to staff etc. I would want that specified too. I can message you the recommendations my private OT made, if thats any help?

Thanks Silver, the only problem for me is that ABA is so expensive. I feel the same as you, if ds's other difficulties were dealt with, his anxiety would most certainly lesson

I know, claw. it is expensive (well, it doesn't need to be, but ime, you need the 'names' onboard, or at least outside people involved, to get taken seriously.)

I hate the fact that none of this is rocket science, and is not always massively time consuming (or no more than dealing with the anxieties/sensory difficulties in the first place), and yet will not be considered by LAs or schools.

Unfortunately i am on a shoe string budget. For me, at this moment in time, my best route is funding from LA for private OT. It is a shame, for the LA that its not about providing help and results. Although i may be in with a chance if ABA proves to be cheaper than private OT.

The OT report says "a programme designed by a qualified pediatric OT to address his weak motor, visual motor and sensory skills" .....and to be carried out by " a named LSA who works alongside the OT."

So I think that the LA are trying to duck out here. Aghhh.

I would say that a pediatric OT, is not qualified unless they have sensory training and they have clearly identifed that he has sensory difficulties. After all, pediatric just means working with children!

I would ask

1. That OT needs sensory training.

1. Are these programmes provided by OT? when? for how long? What shoud they include? how often?

1. OT should also observe your ds in the classroom to ensure the help is successful and provide advice to staff.

1. Will OT provide training to staff? when? for how long? as im assuming programmes would need to done on a daily basis?

1. Who will review the programme, how often? who will provide additional training, if needed?

1. Will the OT be involved in setting targets and IEP targets?