Shall I cancel OT appointment

[Sally44]

The OT service is not fulfilling my son's statement. I have written a letter of non-compliance to the LEA over a week ago and heard nothing. I've also put in a complaint to the LGO.

The OT has written to me apologising for 'giving me the wrong impression' that she was going into school when she was not. She has stated that the OT provision was only on a pilot scheme that has now finished.

She has said that she is not qualified to put together a sensory integration programme.

Although my son is diagnosed as having SID she feels he has no needs in school.

This is contrary to her original report which was used by the LEA at tribunal as proof that they would 'meet his needs'.

The OT is now suggesting that she meetings me at home to see what help she can provide.

 

I really don't know what to do. I feel like I would like to slap her face with a wet fish if she comes to my house.

She is still obliged to fulfill the Statement.

She has done no up to date reports to prove he no longer needs any OT input.

She says she is willing to demonstrate relaxation techniques at home to help with my son's anxiety in school which was causing him to vomit. I have stated in my letter that she should be looking at the cause of the anxiety rather than just treat the symptoms, and as it was happening 'in school', that the relaxation techniques should be 'in school'.

 

I just feel that OT wants to get out of doing as much as she can. And school also want to be left alone and don't want to be liable to deliver an OT programme.

 

What do I do about this visit. Do I refuse on the grounds that she is not fulfilling the Statement. Or do I see her and let her put together a programme for home that is irrelevant for the home environment?

 

I have told her a number of things he cannot do. And she says she is 'willing' to look at all these things individually. But I feel it gives a whole picture of much greater difficulties. He is typical of many on the spectrum. He cannot brush his teeth, or tie his laces, or ride a bick, or climb over a gate, etc etc. If he cannot do those things I feel the skills needed to do them must also be needed to complete tasks in the classroom.

 

So what shall I say to the OT. She is supposed to come in a couple of days.

[Sally44]

I think that if she is not qualified to deliver a sensory integration programme, is she qualified to recognise sensory integration difficulties and needs???

[Karen A]

I have told her a number of things he cannot do. And she says she is 'willing' to look at all these things individually. But I feel it gives a whole picture of much greater difficulties. He is typical of many on the spectrum. He cannot brush his teeth, or tie his laces, or ride a bick, or climb over a gate, etc etc. If he cannot do those things I feel the skills needed to do them must also be needed to complete tasks in the classroom.

 

So what shall I say to the OT. She is supposed to come in a couple of days.

 

Hi Sally.

I am not sure it follows that skills needed to brush teeth,tie shoe laces or ride a bike or climb over a gate are needed to complete tasks in the classroom.

This would only be the case if that was what your son was learning in the classrooom.

Ben cannot tie laces,dress independently or make his own cereal for breakfast.He has support in PE but needs little help with practical tasks in the classroom because he does not need to change during the school day.The problem of shoe laces is easily solved by the use of slip on shoes.We did have an issue with rugby boots but then Ben would never have coped with rugby anyway.

 

We provide most of the OT input at home even though we could push for it as part of the provision in the Statement.

Ben wants to spend his time in school learning in accademic subjects and developing social skills.

At eleven he does not want to be spending time out of class with a TA learning to tie his laces.

Most of the things you mention are specific individual skills that an OT would teach as individual skills.They do not carry over to other skills used in school.So learning to tie laces would help a child tie laces but it would not develop skills like cutting or using a pencil to write.So unless rideing a bike or climbing over gates is part of the curriculum I think it may be difficult to demonstrate a case for transfer of skills to complete tasks in the classroom.

 

Regarding Sensory Integration Therapy the OT may not be trained to offer this.SID is a specialist area.In my area if SID is specifically detailed in a Statement then it is possible to have input from a private OT funded.An OT is qualified to document SID as part of training.However programmes for SID require specific specialist training which most OTs do not have.The OT that supports Ben with dyspraxia does not even believe in therapy for SID being effective and research based.

 

Ultimately you may believe that what you see gives a picture of greater difficulties.However I think that is a personal belief.Whilst you are entitled to hold whatever beliefs you wish I think there is no way to push the OT to agree with you.

 

We have spent a large amount of time in the last three years supporting Ben with things that we could have fought to have delivered in school.The situation continues to the extent that I still cannot think about returning to work.However ultimately what we want is for Ben to be as independent as he can be in the future and to achieve all that he wants to achieve.Yes that involves work for us that we could fight for others to provide.But we could have spent the last three years pushing professionals to do things and Ben would have been the one who did not learn many of the things he has learned at home.

 

I know some children on the Forum who are in residential provision which offeres a twenty four hour curriculum.In that case there would be an expectation that school would support with skills such as learning to ride a bike or shoe lace tieing.I think that if a child lives at home there is an expectation that parents will be involved with some things as they would be for any other child.

 

What do I do about this visit. Do I refuse on the grounds that she is not fulfilling the Statement. Or do I see her and let her put together a programme for home that is irrelevant for the home environment?

 

I have told her a number of things he cannot do. And she says she is 'willing' to look at all these things individually. But I feel it gives a whole picture of much greater difficulties. He is typical of many on the spectrum. He cannot brush his teeth, or tie his laces, or ride a bick, or climb over a gate, etc etc. If he cannot do those things I feel the skills needed to do them must also be needed to complete tasks in the classroom.

 

Also surely brushing teeth,tieing laces,riding a bike and climbing over gates are relevant to the home environment.Well gate climbeing is not relevant to Ben's home environment but then he does not live on a small holding.

 

Also we obtain DLA for Ben.We regard DLA as money provided because Ben has needs outside of the school day .If we were not spending substantial amounts of time supporting Ben with activities of daily living we would not feel justified in claiming DLA.

 

Ultimately Sally it is your choice regarding whether you cancel the appointment.However I think it is worth considering what you will gain by doing so.It is likely to antagonise the OT but will not encourage her to support you.It will not force her to provide more support in school nor will it force school to accept her input.So you may feel some satifaction at having made a point but I am not sure how that helps your son to develop the skills you say you want him to develop.

The OT has said she is willing to look at individual things your son cannot do.I think it is worth at least seeing exactly what is being offered.

 

Karen.

Edited April 1, 2010 by Karen A

[Suze]

Hi Sally, I definiteley would,nt cancel, I would work with her and try out the stratergies she is offering.My son has SID also and has had 2 OT courses, lasting 6 wks each when he was younger .They were delivered by specifically trained staff.After the treatment there was no great change at all.I believe, from experience that you have to take what is offered with open arms and be realistic about the outcomes.There isn,t a cure , exercises can make things better.Have you looked at private therapists?.........we found a lady who took things back and looked at retained infant reflexes, she then devised an exercise program which is supposed to help co ordination etc.My son is dyspraxic also.We tried the exercises again no great change.I would just try to be realistic, there is no great therapy out there , and she might be able to offer some stuff you can do at home that could help and then impact at school aswell.

 

[Kathryn]

Agree with Suze and Karen.

 

My gut feeling is that any support, however inadequate, is better than none. Many parents struggle to get any OT support at all, let alone someone to visit them at home, so take what you can get, the botttom line is, will it help your son in any way? It's he who is the important person in all this. Forgive me, but sometimes I get the feeling from your posts that forcing the LA to comply with the statement has almost become the end in itself? If you continually question the competence of various professionals - how are you ever going to get anyone to work with your son?

 

K x

 

 

[Kazzen161]

She is still obliged to fulfill the Statement.

 

If she is an NHS OT, then she is not obliged to do so. The LA are obliged to make sure he gets OT if it is specified in part 3, but they have no power over NHS employees. They would have to employ a private OT if necessary. If it is in Part 5, then no one has an obligation to provide it.

[Sally44]

Okay so when she comes she can show me herself. I am sure she will find, as I have. That it is not just a case of practising. He does not seem able to do the movements, even if he is watching me. Motor planning and sequencing skills are going to be needed in the classroom. To me these are the same skills, but in different tasks.

 

This OT also put together a 'home' sensory integration programme, that she is now sayng she is not qualified to do. She told me she was going into school to show staff how to deliver it in school. Then she never went. She told me she was going into school to show the school how to teach him relaxation techniques. She never went in. She has apologised for that and how it might have 'misleaded me' into thinking she was delivering a programme in school for my son. Well yes she did mislead me, that is what she said she was doing. She never phoned me back and said she could not do it because she did not have the time. That is what she says in her letter. I'm sorry, but I just don't have the time. His Statement does not say "the OT will draft an OT programme to be delivered in school and reviewed termly. However if OT is too busy she will do nothing."

 

And suddenly from writing a report about all the OT help he needed - and then not delivering it! She has now decided he needs nothing. But she has not re-assessed him. This looks like the biggest comback since Lazarus!

 

The paediatrician has confirmed to me that he has sensory integration disorder. I don't see how a child can have the clinically significant problems required to get that diagnosis and yet it does not effect them in the classroom. That is impossible! His Statement says he is a mono-processor.

 

The LEA argued at tribunal that they could meet all his needs in their school and produced the OT report to prove it - this has not happened. Now the OT says it was on a pilot scheme for a year. The LEA did not say that at tribunal.

 

I feel so let down. What is the point of letting your child be seen, observed, assessed and diagnosed if you are then given absolutely no professional input at all. I don't see what the point of it was. If this is how it continues to be, then he might as well have stayed at his old school and left illiterate and just had that label to deal with, rather than all the other ones he now has and having not been taught any better way of coping or dealing with them. This is such a missed opportunity. And at a later stage the money will have to be spent on him when he is dependent and I am dead.

 

OT have now suggested I contact CAHMS about his anxiety difficulties. Why, so yet another professional can tell me that "yes he has significant difficulties to warrant a diagnosis of anxiety disorder - but we don't need to do anything about it". So lets just add mental health issues to the long list of things he apparently does not need help with.

 

And no I don't feel grateful for any crumbs that fall off the table. I feel she is trying to do as little as possible whilst giving the impression of 'looking busy'.

 

We have been deceived by the LEA and the OT. I don't see what there is to be happy about.

 

I'm waiting to hear from the LEA about the non-compliance issues. If OT no longer feel they need to be involved, then they should at least assess him. Otherwise surely their previous report stands?

 

[Karen A]

Okay so when she comes she can show me herself. I am sure she will find, as I have. That it is not just a case of practising. He does not seem able to do the movements, even if he is watching me. Motor planning and sequencing skills are going to be needed in the classroom. To me these are the same skills, but in different tasks.

 

I don't think they are the same skills.Ben can touch type at speed,he can write fairly well now,he can plan writing fiction that he hopes will be published.However he cannot tie shoe laces,school tie or do small buttons .I am not sure Ben will ever learn to do shoe laces to be honest.However I will not allow these things to limit what Ben is able to do in the future and neither would he.

Ben does need help with planning and organisation in the classroom but that is what he gets.He does not get help with tieing shoe laces or riding a bike in order to transfer those skills to the classroom.That idea just is not logical for me.It is even less logical when the theory says that children with ASD cannot transfer skills learned in one situation to another.

 

I have not said that Ben will learn through practice that is why there are things that I just don't push him to practice...like learning to tie shoe laces.However I would not expect school to spend time teaching him to tie shoe laces either.

 

Karen.

 

 

 

 

[BusyLizzie100]

I really feel for you. We have been through similar frustrations.

 

Unfortunately NHS staff are often overworked and underpaid and have restrictions placed on them. We have seen NHS OTs who 'do' sensory integration, if it is a route they have chosen to take, but their input is often limited. Sadly a six-week block of therapy of year doesn't quite cut it for my DS2, for example. It's one of the reasons it was felt necessary to move him out of mainstream and into a specialist setting, where OT was built into his day and where he could receive 1:1 sensory integration therapy weekly.

 

Having said that, if the OT provision is specified and quantified in Part 3, then it certainly is up to the LA to provide it. My LA had a 'gentleman's agreement' (ie, the LA agreed not to pay) with the local NHS OT to provide the OT in Part 3 of my son's Statement; the OT did it as a labour of love really, but there came a point when she was under pressure to cater for other children (keeping waiting lists down, etc) and had to withdraw. But it is absolutely the case that if the NHS OT can't undertake the provision, then the LA HAS to provide an OT, which would probably have to be a private one.

 

Of course there is the possibility that the LA may listen to the NHS OT and decide from what she is saying that OT is no longer needed, but in that case they will have to amend the Statement, and you can appeal, and so the cycle begins again... This happened at one point with DS2's SALT - the LA actually did amend the Statement to reduce provision, and we appealed and it was put back in. Then a year later, the SALT discharged him. Shortly afterwards, DS2 moved to an autism-specific school where these therapies are built in to the curriculum - there are constant opportunities to practise all kinds of fine motor skills, for example, and often in a really fun way, but still really specific and designed to engender self-help and independent skills. Such as, tying laces, peeling a potato, kicking a ball, writing, drawing, using equipment eventually in science lessons...

 

I think you should meet the OT and use whatever input she can give you. You may find that she actually gives you the ammunition you need in requesting a private OT to fulfill the Statement. Unfortunately if OT is in Part 5 you have no say.

 

In DS2's case we got a private OT to assess him as part of our appeal to SEND and it was largely due to her detailed input that we got OT written into the Statement. However, the mainstream school just could not cater for all the provision that was required, eg sensory diet. The NHS OT agreed that it was very difficult to implement a sensory diet in school, since it needs to be overseen by an OT and regularly 'tweaked'; teaching staff and LSAs just are not qualified to do this.

 

And finally, there is nothing more exasperating than someone saying they will do something and then not doing it. Hope you get something sorted.

 

Lizzie xxxx

Edited April 1, 2010 by BusyLizzie100

[Karen A]

Okay so when she comes she can show me herself. I am sure she will find, as I have. That it is not just a case of practising. He does not seem able to do the movements, even if he is watching me. Motor planning and sequencing skills are going to be needed in the classroom. To me these are the same skills, but in different tasks.

 

This OT also put together a 'home' sensory integration programme, that she is now sayng she is not qualified to do. She told me she was going into school to show staff how to deliver it in school. Then she never went. She told me she was going into school to show the school how to teach him relaxation techniques. She never went in. She has apologised for that and how it might have 'misleaded me' into thinking she was delivering a programme in school for my son. Well yes she did mislead me, that is what she said she was doing. She never phoned me back and said she could not do it because she did not have the time. That is what she says in her letter. I'm sorry, but I just don't have the time. His Statement does not say "the OT will draft an OT programme to be delivered in school and reviewed termly. However if OT is too busy she will do nothing."

 

And suddenly from writing a report about all the OT help he needed - and then not delivering it! She has now decided he needs nothing. But she has not re-assessed him. This looks like the biggest comback since Lazarus!

 

The paediatrician has confirmed to me that he has sensory integration disorder. I don't see how a child can have the clinically significant problems required to get that diagnosis and yet it does not effect them in the classroom. That is impossible! His Statement says he is a mono-processor.

 

The LEA argued at tribunal that they could meet all his needs in their school and produced the OT report to prove it - this has not happened. Now the OT says it was on a pilot scheme for a year. The LEA did not say that at tribunal.

 

I feel so let down. What is the point of letting your child be seen, observed, assessed and diagnosed if you are then given absolutely no professional input at all. I don't see what the point of it was. If this is how it continues to be, then he might as well have stayed at his old school and left illiterate and just had that label to deal with, rather than all the other ones he now has and having not been taught any better way of coping or dealing with them. This is such a missed opportunity. And at a later stage the money will have to be spent on him when he is dependent and I am dead.

 

OT have now suggested I contact CAHMS about his anxiety difficulties. Why, so yet another professional can tell me that "yes he has significant difficulties to warrant a diagnosis of anxiety disorder - but we don't need to do anything about it". So lets just add mental health issues to the long list of things he apparently does not need help with.

 

And no I don't feel grateful for any crumbs that fall off the table. I feel she is trying to do as little as possible whilst giving the impression of 'looking busy'.

 

We have been deceived by the LEA and the OT. I don't see what there is to be happy about.

 

I'm waiting to hear from the LEA about the non-compliance issues. If OT no longer feel they need to be involved, then they should at least assess him. Otherwise surely their previous report stands?

 

I have to ask having just read this if you ever wonder why professionals are so defensive with you Sally ?

I can talk wearing a different hat this afternoon.I have a husband who works in the NHS and who has worked in the NHS for over twenty years.

It is the eve of a bank holiday and I do not know what time he will be home.

He tells me that almost all sectors of the NHS are being pushed desperately hard with ever smaller budgets.

Whoever gets in at the election things will get worse next year.

He is one of thousands of excellent professionals who do their best in a very difficult situation.

When parents continue to question people who try to do their best it is no wonder that they give vague promises.

 

I would also add.One of the reasons why your son has a mile long list of lables is that you advocate a policy of obtaining assessments from numerouos different people in order to obtain numerous labels.It is you who obtained the assessments,observations etc .You then advocate obtaining a label as a way of forcefully claiming provision.

As far as I can gather if every current need that your son has had a programme in school given by a professional then he would have hardly any time with his peers at all.

 

As far as referal to CAMHS goes I do not think it is worth considering unless you wish to attempt to work with professionals.After being discharged on Tuesday after five years CAMHS input I am sure that one of the first issues they would explore would be whether attitudes at home or between home and school could be contributing to your son's anxiety.

 

That will all probably make me very unpopular.

However we have both been on the Forum a long time now.As a parent I do understand the frustations very well of pushing for appropriate provision.However I do believe that the key word is appropriate provision.It is not ideal provision or the provision that we as parents think is needed.

 

For what it is worth I worked in the NHS for twelve years myself.However professional staff may be constant critiscism by relatives or a patient leads to an atmosphere which is stressed and where all professionals involved spend most energy avoiding the threat of being attacked.Ultimately that effects patient care and relationships.In the end it is the patient who suffers.If the OT works for the NHS she could just discharge your son.It is the LA who have a responsibiltiy to provide what is documented in the Statement.They would then have to try to find another OT.

 

Edited April 1, 2010 by Karen A

[BusyLizzie100]

I have to ask having just read this if you ever wonder why professionals are so defensive with you Sally ?

I can talk wearing a different hat this afternoon.I have a husband who works in the NHS and who has worked in the NHS for over twenty years.

It is the eve of a bank holiday and I do not know what time he will be home.

He tells me that almost all sectors of the NHS are being pushed desperately hard with ever smaller budgets.

Whoever gets in at the election things will get worse next year.

He is one of thousands of excellent professionals who do their best in a very difficult situation.

When parents continue to question people who try to do their best it is no wonder that they give vague promises.

 

I would also add.One of the reasons why your son has a mile long list of lables is that you advocate a policy of obtaining assessments from numerouos different people in order to obtain numerous labels.It is you who obtained the assessments,observations etc .You then advocate obtaining a label as a way of forcefully claiming provision.

As far as I can gather if every current need that your son has had a programme in school given by a professional then he would have hardly any time with his peers at all.

 

As far as referal to CAMHS goes I do not think it is worth considering unless you wish to attempt to work with professionals.After being discharged on Tuesday after five years CAMHS input I am sure that one of the first issues they would explore would be whether attitudes at home or between home and school could be contributing to your son's anxiety.

 

That will all probably make me very unpopular.

However we have both been on the Forum a long time now.As a parent I do understand the frustations very well of pushing for appropriate provision.However I do believe that the key word is appropriate provision.It is not ideal provision or the provision that we as parents think is needed.

 

For what it is worth I worked in the NHS for twelve years myself.However professional staff may be constant critiscism by relatives or a patient leads to an atmosphere which is stressed and where all professionals involved spend most energy avoiding the threat of being attacked.Ultimately that effects patient care and relationships.In the end it is the patient who suffers.If the OT works for the NHS she could just discharge your son.It is the LA who have a responsibiltiy to provide what is documented in the Statement.They would then have to try to find another OT.

 

I think your reply is a little harsh, Karen. Who are we to say that Sally hasn't got a legitimate grievance? I don't think that this kind of reply, which is akin to a personal attack, really helps anyone. The sense I got from Sally's post is that she is very upset and trying to do her best. Which is probably true of all of us on the forum, so please let's not take it out on each other.

 

Lizzie x

[cmuir]

Hi

 

I think Karen A's post is more about self-reflection, which is a healthy thing to do, but also a difficult thing to do. Karen A raises some valid points and sees things from the other side of the fence, again, something that's difficult, but necessary to try and do. I must admit to having my hackles raised quite a few times when being told 'you're emotionally attached' with the inference being that I'm somehow blinkered and unable to see the bigger picture. Sometimes that's true and I do find that I have to check myself. As parents we all want the very best for our kids, but sadly often have to 'make do' with the best that's on offer. Karen A also has a valid point that budgets are being cut in education and health care left, right and centre. There are some fantastic professionals out there who will go the extra mile and there are others who quite simply are more interested in budgetary number crunching. No one can blame a parent for wanting the best, particularly when you feel that your child is suffering. However, sadly I've found it's best to try and work with individuals caring for my son, though I think sometimes they get things wrong (it's sometimes worth working with them to illustrate that, which in turn can make them more cooperative). Though hard at times, I've had to try and find good points about the school and praise them accordingly. I'm aware that if I'm constantly on their backs or appearing to be constantly negative, I'm going to get nowhere fast. All idealistic, but I've resigned myself to the fact that 'the best' doesn't exist, though won't stop me trying to 'get better' for kiddo. (I think Sally's the same and we can see that.) Fact is, if my son were in a special school, for example, I know there would still be problems and things not done quite how I'd like purely because I know kiddo best and want the best for him. Nothing wrong in that – it's just about wanting the best that's possible.

 

Caroline.

Edited April 1, 2010 by cmuir

[Suze]

Karen has a point regarding the NHS , you cannot get any provision in east cheshire for any OT if your child has a dx of autism that is a fact.They are severely under funded in fact.So if Sally lived near me she would,nt get anything, regardless of it being in a statement or not.My son fortunately was assessed and treated prior to this.So I very much feel that any help offered is good and should be accepted.My only worry Sally is that you feel it will make a big difference , and I,m not sure it will .A little different I know but when my son leaves school next year , he will be classed as illiterate.This is despite having typing lessons, extra english lessons for the last 7 yrs , dyslexia specific teaching, we have done the lot, not even mentioning the writing courses he has done aswell.We have used tinted lenses, overlays, he has been educated in a quiet environment.Everything that could be done has, and all of this was dx and assessed by proffessionals along the way.It may have helped a bit I guess, but he is still to pick up a book and read, or write a letter.

...I don,t blame anyone for this as I know help has been given and my son has reached as far as he is going to get with his english.I,m worried that you feel that all your sons problems can be fixed and I,m not sure how possible this is.

 

 

 

[Karen A]

I think your reply is a little harsh, Karen. Who are we to say that Sally hasn't got a legitimate grievance? I don't think that this kind of reply, which is akin to a personal attack, really helps anyone. The sense I got from Sally's post is that she is very upset and trying to do her best. Which is probably true of all of us on the forum, so please let's not take it out on each other.

 

Lizzie x

 

I probably did word my last post rather strongly.I certainly did not intend to take anything out on Sally.I most certainly was not launching a personal attack.

I am very happy for the mods to take a look and am sure they are able to sort me out if I have over stepped the mark here.

I very rarely speak in such straight terms except perhaps to BD who is more than up to the challenge.

 

The reality is that Sally repeatedly and consistently complains about professionals in extremely vocal terms.This is not a one off shout of frustration which I would be as guilty of as anyone.If most professionals that I know of related to parents the way that Sally appears to relate to professionals they would be disciplined.

 

And no I don't feel grateful for any crumbs that fall off the table. I feel she is trying to do as little as possible whilst giving the impression of 'looking busy'.

 

We have been deceived by the LEA and the OT. I don't see what there is to be happy about

for one example.

 

If Sally relates to professionals in this way then that will impact the support her son recieves.All of the professionals will do everything in their power to either pass the buck or discharge her son.Ultimately he will be impacted most.

 

If Sally just wants me to say yes cancel the OT appointment and slate the OT for not doing what you think is her job I could say that.It might make Sally feel better but it would not obtain apporopriate support for her son.

 

Sally in short.If you wantthe OT to continue to work with you and your son you need to decide to manage your anger with her otherwise she will not be able to offer any useful advice and the home visit will be a waste of time for all concerned.

 

Karen.

Edited April 1, 2010 by Karen A

[BusyLizzie100]

My only worry Sally is that you feel it will make a big difference , and I,m not sure it will .A little different I know but when my son leaves school next year , he will be classed as illiterate.This is despite having typing lessons, extra english lessons for the last 7 yrs , dyslexia specific teaching, we have done the lot, not even mentioning the writing courses he has done aswell.We have used tinted lenses, overlays, he has been educated in a quiet environment.Everything that could be done has, and all of this was dx and assessed by proffessionals along the way.It may have helped a bit I guess, but he is still to pick up a book and read, or write a letter.

...I don,t blame anyone for this as I know help has been given and my son has reached as far as he is going to get with his english.I,m worried that you feel that all your sons problems can be fixed and I,m not sure how possible this is.

 

Suze, that is a good point. It's particularly true of my eldest son, who has had OT input regularly since he was five and at 12 still can't write legibly.

 

I wonder if the real question here is whether the needs of Sally's son can be met in mainstream. I hope I haven't offended Sally by saying that.

 

Also, let's remember that the way we 'speak' on the forum isn't necessarily the way we speak in real life, sometimes we need to come on here to vent as well as seek advice.

 

Lizzie xx

[Karen A]

Also, let's remember that the way we 'speak' on the forum isn't necessarily the way we speak in real life, sometimes we need to come on here to vent as well as seek advice.

 

Lizzie xx

 

I do not have a problem with that as most people here will know.

I just thought this was an advice post rather than a venting post.

It is titled ''Shall I cancel OT appointment'' rather than my usual ''Need to rant'' or some similar title.

Karen.

 

[Suze]

Glad you can see where I,m coming from busyliz , my son is in yr 10 now at high school so we have been through lots of interventions along the way etc.I am just worried for Sally, in that she may need to" accept " (hope I,ve worded that o.k. ), the attainments her son is capable of.My son has a mahoosive IQ on the weschler scale..............however it means zilch!!............if he is gonna sit his gcse eng lang , as he isn,t allowed a scribe or a reader, hence he,ll be lucky to get a grade at all .When on the face of it his IQ puts him in the top 10% of the population.

[Karen A]

Glad you can see where I,m coming from busyliz , my son is in yr 10 now at high school so we have been through lots of interventions along the way etc.I am just worried for Sally, in that she may need to" accept " (hope I,ve worded that o.k. ), the attainments her son is capable of.My son has a mahoosive IQ on the weschler scale..............however it means zilch!!............if he is gonna sit his gcse eng lang , as he isn,t allowed a scribe or a reader, hence he,ll be lucky to get a grade at all .When on the face of it his IQ puts him in the top 10% of the population.

 

Sorry off topic I know.

Why not allowed scribe or reader ?

That is so frustrating.

Karen.

 

[Suze]

Hi, because its an english language exam, iyswim?...in other exams he is allowed a scribe , reader and extra time, the school had to do "alot" to prove to the examining boards that he was working at a more lower level.

[Karen A]

Hi, because its an english language exam, iyswim?...in other exams he is allowed a scribe , reader and extra time, the school had to do "alot" to prove to the examining boards that he was working at a more lower level.

 

That is really frustrating.

Karen.

 

[Sally44]

I really feel for you. We have been through similar frustrations.

 

Unfortunately NHS staff are often overworked and underpaid and have restrictions placed on them. We have seen NHS OTs who 'do' sensory integration, if it is a route they have chosen to take, but their input is often limited. Sadly a six-week block of therapy of year doesn't quite cut it for my DS2, for example. It's one of the reasons it was felt necessary to move him out of mainstream and into a specialist setting, where OT was built into his day and where he could receive 1:1 sensory integration therapy weekly.

 

Having said that, if the OT provision is specified and quantified in Part 3, then it certainly is up to the LA to provide it. My LA had a 'gentleman's agreement' (ie, the LA agreed not to pay) with the local NHS OT to provide the OT in Part 3 of my son's Statement; the OT did it as a labour of love really, but there came a point when she was under pressure to cater for other children (keeping waiting lists down, etc) and had to withdraw. But it is absolutely the case that if the NHS OT can't undertake the provision, then the LA HAS to provide an OT, which would probably have to be a private one.

 

Of course there is the possibility that the LA may listen to the NHS OT and decide from what she is saying that OT is no longer needed, but in that case they will have to amend the Statement, and you can appeal, and so the cycle begins again... This happened at one point with DS2's SALT - the LA actually did amend the Statement to reduce provision, and we appealed and it was put back in. Then a year later, the SALT discharged him. Shortly afterwards, DS2 moved to an autism-specific school where these therapies are built in to the curriculum - there are constant opportunities to practise all kinds of fine motor skills, for example, and often in a really fun way, but still really specific and designed to engender self-help and independent skills. Such as, tying laces, peeling a potato, kicking a ball, writing, drawing, using equipment eventually in science lessons...

 

I think you should meet the OT and use whatever input she can give you. You may find that she actually gives you the ammunition you need in requesting a private OT to fulfill the Statement. Unfortunately if OT is in Part 5 you have no say.

 

In DS2's case we got a private OT to assess him as part of our appeal to SEND and it was largely due to her detailed input that we got OT written into the Statement. However, the mainstream school just could not cater for all the provision that was required, eg sensory diet. The NHS OT agreed that it was very difficult to implement a sensory diet in school, since it needs to be overseen by an OT and regularly 'tweaked'; teaching staff and LSAs just are not qualified to do this.

 

And finally, there is nothing more exasperating than someone saying they will do something and then not doing it. Hope you get something sorted.

 

Lizzie xxxx

 

 

How my LEA is getting out of any appeal due to amendments, is they are asking for a total re-assessment from the beginning. I know that until the new Proposed Statement arrives, that the old Statement stands. But I have already complained about non-compliance and heard nothing. So my son has not had the OT programme his Statement says he should have in section 3 (provided by education and not health). Now the pilot scheme is over the OT now says she does not have the funding. Call me cynical, but at the same time as the pilot scheme finished he suddenly did not need the same input she said he needed previously. The OT has not re-assessed - I will have to check if she will re-assess as part of the new 're-assessment'. But if funding is now an issue, and she is already saying she does not feel he needs input. Then that is what her new report will say.

 

I just find it impossible to get my head around the fact that professionals are diagnosising him with certain things that require professional input. But are then saying that he does not need the input. Well why don't they take away the diagnosis then if he is okay.

 

I know i'm ranting, but these are missed opportunities.

 

I think I will end up back at tribunal seeking a specialist placement because that seems to be the only environment where the child receives professional input because they are on site. Any school run by the LEA does not have the input. So even if you get private reports that prove your child needs that input, at the next annual review they are seeking to reduce it. So then you are weighing up whether it is more cost effective to get private reports every year, or pay for private therapy.

 

I would just like to spend my time being a mum and doing normal stuff with my kids instead of always having to be at loggerheads with the LEA. I don't have to do this for my other child. That is the only thought that keeps me sane, because otherwise I might begin to believe their spin. I am doing this because it needs to be done. I get no kudos out of it and would much rather spend my time and money on something else. But I just can't sit by and watch him failing and do nothing. And it isn't rocket science. It is just so blooming obvious the mistakes they are making.

 

And i'm just so fed up of catching the LEA out with their lies. I have today had an email from my son's SALT confirming to me the reason why my son's school is not using SCERTS yet. It is because of copyright problems the LEA are trying to resolve. However I spoke to an LEA maintained specialist school that I am going to visit (yesterday) run by the same LEA that has had SCERTS up and running for over a year! So my son's school or LEA must be lying to the NHS SALT who is passing on that explanation to me. I don't think she is deliberately lying to me. I think the LEA/school have fobbed her off for the last year. I think I will tell her about the other school to see what she says. Because she comes in from another district and probably has no idea.

 

Anyway, thanks to all of you that have read and commented on this thread. I'm off to have a good Easter. Hope you all have one too.