How long to get a diagnosis of Dyslexia

[Sally44]

As anyone who has been following my posts knows I've just had the annual review.

At the AR the EP refused to dx dyslexia because she said she needed more time as my son had started on the Learn to Read Programme in November 2009 and the EP wants to wait until May to reassess him because she wants to see what progress he makes. I don't know what the outcome of this programme is going to prove. If he does improve will she says he is not dyslexic, and if he doesn't improve will she say he is not dyslexic. I know that dyslexia is on a continum, so some will improve more than others.

 

Learn to Read is a daily literacy programme. It took 15 months for school to get this. But I don't see any criteria that a child has to have gone through any specific programme before an assessment can take place. His Statement says that "xxx is likely to be dyslexic, his difficulties being severe and persistent however more professional input and support is required to determine this." That was supposed to mean the diagnosis happened this year to be included in this AR. Again that sounds like non-compliance as school and the EP have not fulfilled that part of the Statement.

 

My son was initially supposed to be assessed for dyslexia back in 2007 when the autism out reach teacher took forms into his former school. The school lost those forms. Then my son changed to his current school. Then the SPLD teacher at the LEA stopped assessing or diagnosing children for dyslexia - on the explanation that all children with SPLD will get their needs met with or without a diagnosis.

 

My son has been on SA+ since reception year. He has had IEP targets for numeracy and literacy since then. He has not made much progress.

 

The EP also said that for a diagnosis of dyslexia they also look for a 'difference in academic abilities' ie. good at science, but poor at literacy. My son's academic ability ranges from P7 to nearly 1b. However in the primary years there are not so many subjects on top of literacy and numeracy to excel in.

 

The EP dismissed our private EP report because they were not standardised intelligence tests ie. she had had to modify them as my son would not cooperate fully on the day. But I thought that EP's were allowed to modify assessments and still make a diagnosis, otherwise what is the point of modifying them?

 

And places where it says in reports "he has difficulties consistent with a diagnosis of dyslexia", they said that is not a diagnosis. However my son's original diagnosis from the MDT he saw says that he has "difficulties consistent with a diagnosis of ASD." That diagnosis was accepted.

 

I do not trust this EP. She is against standardised tests, and has emailed me specifically saying she refuses to do them on my son. (The Jim Rose report into dyslexia states that LEA EPs and SPLD teachers (if qualified) can and should diagnosis and should state the severity of the dyslexia). Yet when it comes to a diagnosis and input being put in the Statement she straight away says "but he has no diagnosis".

 

I think the only way around this is to get a private assessment. I know the cost of one at DA. However I am thinking that if I need a full EP private report towards an appeal or re-assessment, then I might as well wait and ask the private EP to assess for dyslexia as well. But in the meantime should I write a letter to the LEA about non-compliance to the above aspects of the Statement? If I do that the LEA may request the EP to assess now. But I don't think I want her to assess because I don't trust her.

 

She said at the AR that there are 'other' reasons for a child not to make good academic progress. That can only be a hint at MLD, which I am sure he does not have. So I am worried that she may assess in May and say he has MLD. That would also mean that the LEA may argue that in year 7 he should go to a mainstream MLD school, which I don't think is appropriate.

[chris54]

To give the short answer it takes as as long as it takes, which could be as short as 15 minuets.

 

But it really depends on what the problem is, as dyslexia covers a wide rang of difficulties, what most people think of as dyslexia, what at one time was called work blindness, is only one aspect.

 

I am considered dyslexic by some, for me the problem is that I have to put all my concentration into each word, and block out every thing else while I deciphers what that word says and then move on to the next word, then when Iv done that for each word go back over the sentence once or twice to see what it says, so for me reading is a long process. I can now read anything, it just takes a long time.

 

I know I have said this before and I know that it is not the answer for every one but I only learnt to read at the age of 12 when properly introduced to phonics, how I still read,(and spell) using phonics, I do not read word as single enteritis but as a series of phonic sounds, put together as a word. I look at each letter and then see what groups of sounds they make and so on.

 

Try it, imagine reading a book only able to see one letter at a time. Well that is a bit what it is like for me when I am reading.

 

I do not agree with what the EP said. You are ever Dyslexic or not, perhaps not quite that black and white. You can be of any academic ability and be dyslexic. But you always need to remember that if the problem is that a person cannot read and write it does not mean they are dyslexic, only that they have not learnt to read and write there could be any number of reasons for that.

 

Sorry I know this has not really answered the question posed.

[jaffacakes]

I think you're being very patient, I would have blown a fuse by now.

 

Ross is out of school and won't be going back until we have a diagnosis - it may be a very strong tactic but I'm not putting him through more of what he has already had to deal with.

 

I suspect that Ross will be back in a new school by Sept 2010.

 

Good Luck!

 

Lynn

[Sally44]

What I am getting is I am being told things and promised things, even written things in the Statement. When I query if they are happening they say that they are. Then I find out later that they are not.

This EP has said that my son cannot receive a diagnosis of dyslexia because he has not had a standardised test. He has had a standardised test in 2006 by the LEA EP and that highlighted areas of strength and weakness. This same EP, some time after that in 2007 refused to any further standardised testing of cognitive ability because we already knew that, and because she felt that carrying out classroom based assessments could give a better indication of his difficulties. However when I queried the outcome of those "classroom assessments" she did not reply. That was when my son moved school and a new EP was under that school. That EP has left and I now have the old one again, who attended the AR. So this EP who refused to do any further standardised tests, is now saying she cannot diagnose without standardised testing.

 

When we went to tribunal last January. We demonstrated that his current school was not meeting his needs and we sought an independent placement. That is when the LEA came with a representative from the enhanced resource school and they said they would fulfill the Statement. Well they haven't.

 

They also have not had any kind of continuity, or passing on of information from one school to the other, or continuity via the EP service.

 

I've also found a letter from this same EP stating that my son should have the Learn to Read Programme (this was at his former school in 2007). Obviously that didn't happen either. And when I asked the EP to confirm what reading programme he did have she did not reply as she said "your son is now moving to another school and I will liaise with the new EP for that school). Obviously she didn't do that.

 

So when he moved my son has not had access to the EP as his current school kept saying "we are happy with his progress and do not need to involve the EP."

 

But now I don't trust her. I will speak with the PP and IPSEA to decide whether to make a formal complaint. I am aware that any assessments cannot be duplicated within 6 months. So it might be an idea to write to the school and EP service refusing them to assess my son (how weird is that, you spend all your time trying to get them in, and then you don't trust them and have to keep them out). After I have had a private EP assessment I can allow her to assess if she wishes.

 

I am hoping that all this demonstrates that the LEA are not willing or able to meet his needs. And hopefully that might go in our favour.

 

 

[Sally44]

I think you're being very patient, I would have blown a fuse by now.

 

Ross is out of school and won't be going back until we have a diagnosis - it may be a very strong tactic but I'm not putting him through more of what he has already had to deal with.

 

I suspect that Ross will be back in a new school by Sept 2010.

 

Good Luck!

 

Lynn

 

 

I do understand how you are thinking and feeling. But keeping your son out of school can mean you are acting illegally.

[JsMum]

Hi Sally

 

My son was screened for Dyslexia at 6yrs old, he never recieved any spersific Dyslexia support until he went to his residential school in yr 7 from the LEA, the only Spersific Dyslexic support he recieved was weekly one to one half an hour sessions from Dyslexia Action, they agreed to write a private report stating that my sons Dyslexia was severe of which the LEA ignored until he was reassessed for ASD in yr 6, this was then dx with Dyslexia but it wasnt written as this it was written as Spersific Learning Difficulties and in Brackets Severe Dyslexia so maybe concentrate on the SpLD.

 

If your son has a SpLD then he can not have Moderate Learning Difficulties for MLD your intelligence has to below 70.

 

Js is average to above average intelligence.

 

Placing a child in a MLD school who is bright but with significant complex needs will not challenge him in areas they excell.

 

It is also considerbly a lot cheaper to place a child in MLD than a specific specialist school, I was amazed to see so many children in the local MLD the LEA tried to get J in and witnessed children who were severe, there parents are too trying to access special schools for thier needs, its across the board.

 

In Js case it took the LEA to Diagnose SpLD 6 years!

 

Dont forget it can go undetected in boys into adulthood, many youngoffenders/prisoners are later screened for Dyslexia and have a positive DX, they go in with the reading age of 8yrs old and is one of the major factors why so many disengage from school and leave from the ages of 11 plus is because thier educational needs were not met when in primary school and secondary school

 

J has a lot more in his statement now too from going to tribunal to change part 2,3 and 4 of his statement he finally started his specialist school in November 2008 and the difference is amazing, he is now writing, reading, and loves litracey now.

 

This child couldnt read, write, spell, when he first started, and he is still dx with Severe Dx, the changes are because he has the support and specialism to help him.

 

I would say looking back the private assessments from DA did really help, so I would agree with having them done as in tribunals they use ALL reports not just LEAs.

 

If J hadnt of got dx he wouldnt of got the spersific support he has now, one of the biggest factors of his low self esteem and school refusal in mainstream was because his Dyslexia needs were not met, not only did this effect his education but it has caused DEEP rooted self beliefes of himself and the emotional scars of feelings of he is stupid, thick are serious, so its not just educationally damaging, its psychologically damaging that can take years to rectify.

 

Good luck, dont give up, get the private assessment to back you up and hopefully you will see what I am talking about with the changes when a child accessess the specialism provisions that support Dyslexic children.

 

Even if J had of recieved the same level of support in a mainstream school it wouldnt of made any difference because J needed a totally different learning enviroment, so look at both the spersific Dyslexic support and his enviroment, J defo needed his Specialist special school.

 

JsMumxxx

Edited February 28, 2010 by JsMum

[chris54]

Just in case anyone is not clear about it, if you are dyslexic, you always have been and always will be dyslexic. It does not go away, you just learn to overcome its limitations.

 

MLD.

 

Are we talking about Mild/Moderate Learning Difficulties or Mild/Moderate Learning Disabilities. Two different things.

 

The IQ of 70 refers to the later.(For Moderate Learning Disabilities it is an IQ of between 35 and 50)

 

As far as I am aware you can have Learning Difficulties and have a high IQ.

Edited February 28, 2010 by chris54

[Sally44]

When we go back to tribunal - as we will undoubtedly have to do.

How do you demonstrate that the school you want is the ONLY one that can meet his needs, when the LEA may turn up with the head of his current school and agree to do everything that the independent school does. Will panel take into account the fact that they promised that last time and did not do it, or will the panel give the LEA another chance?

Or rather than comparing the independent school with his current one, it might be better to demonstrate that there are no LEA maintained secondary schools that can meet the Statement.

[JsMum]

Just in case anyone is not clear about it, if you are dyslexic, you always have been and always will be dyslexic. It does not go away, you just learn to overcome its limitations.

 

MLD.

 

Are we talking about Mild/Moderate Learning Difficulties or Mild/Moderate Learning Disabilities. Two different things.

 

The IQ of 70 refers to the later.(For Moderate Learning Disabilities it is an IQ of between 35 and 50)

 

As far as I am aware you can have Learning Difficulties and have a high IQ.

 

From the research Ive read this is as I understand the differences of Learning Difficulties and Learning Disabilitys.

 

Spersific Learning Difficulties Dyslexia, Dyspraxia, Disgraphia, Discalula are all Average to above average intelligence.

 

Mild Learning Difficulties= IQ between 80-70

Moderate Learning Difficulties= IQ under 70

 

Severe Learning Difficulties= IQ under 60

 

Learning Disability = IQ under 55 with severe impairments

 

I contact this organisation to get more understanding and they sent me this sheet information

 

http://www.bild.org.uk/pdfs/05faqs/ld.pdf

 

I had to prove that even though my son had average to above average intelligence he has severe impairments and can not apply his intelligence to everyday tasks and tranfer his intelligence to other situations.

 

This is why it is imperitive that a child with High intelligence with complex special needs is not placed in a severe or moderate learning difficulty school because they may not be able to meet the potential of his abilities.

 

For us we were able to prove he required a spersific education placement and a 24hr curriculum due to his complex needs.

 

As I have said even if he had of got help in one or two litracey lessons in a mainstream for his dyslexia he is still excepted to read, write, spell in ALL lessons, again in a classroom of 30 plus kids that was impossible for him to learn in this enviroment, the only time he would of accessed the specialist provision in the mainstream school was English and Maths and if he were becoming Disruptive in class, he was already been removed from class for disruption, we also had a real problem getting him to school in the first place and in secondary we couldnt even get him to step foot in the school so how was he suppose to access his special provisions if he wasnt even been able to get throw the door because the whole enviorment overwelmed him, sensory needs would of not been met here.

 

It totally depends on the mainstream school for many kids with Dyslexia, ADHD, Aspergers Syndrome, from the evidence I see from parents in my area there is only one grammer school that seems to be able to meet thier needs for the first couple of years, but as work becomes more complex and social devides thats when the real problems begin, for many the kids are leaving education by 14 and going into practical lessons in 1-1 tution taylored education problem is its only for a part time table. So in effect recieving half of education, there has been a high increase in home education due to unmet special needs.

 

JsMum

Edited March 1, 2010 by JsMum

[Karen A]

Hi Sally have you got the report back with recommendations regarding the AR ?

If not it may be worth waiting for that.Once it is available if there are any changes then either appeal them or request a Re-assessment.

As you have just had an AR I am not sure about what you would gain by complaining regarding non-compliance without having seen the outcome of the AR.

 

Karen.

[Karen A]

When we go back to tribunal - as we will undoubtedly have to do.

How do you demonstrate that the school you want is the ONLY one that can meet his needs, when the LEA may turn up with the head of his current school and agree to do everything that the independent school does. Will panel take into account the fact that they promised that last time and did not do it, or will the panel give the LEA another chance?

Or rather than comparing the independent school with his current one, it might be better to demonstrate that there are no LEA maintained secondary schools that can meet the Statement.

 

What year is he in now ?

I am just wondering how long you have left at current primary school.

We decided in year 6 that it would disrupt Ben more to move him to another primary school only to have transition in a few months than to leave him where he is.

Also if you find a school that provides better support for SPLD will they also be able to offer appropriate provision regarding ASD ?

Karen.

 

 

 

[Sally44]

Hi Sally have you got the report back with recommendations regarding the AR ?

If not it may be worth waiting for that.Once it is available if there are any changes then either appeal them or request a Re-assessment.

As you have just had an AR I am not sure about what you would gain by complaining regarding non-compliance without having seen the outcome of the AR.

 

Karen.

 

I haven't got the recommendations back yet. But his Statement does say "xxx is likely to be dyslexic, his difficulties being severe and persistent, howwever more intensive professional input is required to confirm this."

 

So before, or by the AR the EP service should have been able to say yes, or no to a dx of dyslexia. They simply have not done it. That means it is non-compliance.

 

Although I contacted the NHS OT regarding her OT input and she informed me of 'what' she would be doing in school; her report at the AR confirms that she delivered a session of AIT from March - July 2009 and has done nothing since. She is supposed to put together an OT programme which is to be reviewed termly in school. That also has not happened. Again that is non-compliance.

 

Regarding your other post. My son is in year 4. And there are no LEA school with expertise in ASD and SPLD. So we would be looking for an independent placement. However whether I appeal or ask for a re-assessment the LEA can again promise to fulfill the Statement and meet all his needs. I wonder how many chances the Tribunal Panel gives to LEAs?

[Sally44]

What I am finding so frustrating now is that I have tried my best to monitor what was happening in school. And I have been told by everyone I contacted what they were doing and how they were fulfilling the Statement. Now, at AR, it is obvious that they haven't.

And I already had to send once letter of non-compliance because the school said my son was receiving ICT software 'comparable' with the one recommended, and it turns out he wasn't. The school also said he was receiving a literacy programme, when infact they only started it in November 2009 (9 months after the Statement was finalised).

The SALT still has not put the SCERTS programme into place (again non-compliance).

The list goes on and on.

[chris54]

Hi JsMum

 

The very link that you included says that learning disabilities start at a IQ of 70 and below.

 

The term Learning Disabilities was introduced as a PC term for Mentally Handicapped.

 

The research that I have done does not put any IQ numbers on learning difficulties only what they may include just about anything, It was more to do with the difficulties and how they inpact on that peason, and as I understood it could, in a lot of cases, be overcome and then that person would no longer labeled as having learning difficulties. This would not be the case if determined by IQ.

On the other hand some one with a learning disability will always have that disability.

 

The specific Learning difficulties you quote, They may be diagnosed in people average to above average intelligence, but they are not exclusive to that group of people, If looked for they will also be found in people of below average intelligence.

 

Perhaps there is a professional out there who can give us a definitive answer to this one.

Edited March 1, 2010 by chris54

[coolblue]

Hi JsMum

 

The very link that you included says that learning disabilities start at a IQ of 70 and below.

 

The term Learning Disabilities was introduced as a PC term for Mentally Handicapped.

 

The research that I have done does not put any IQ numbers on learning difficulties only what they may include just about anything, It was more to do with the difficulties and how they inpact on that peason, and as I understood it could, in a lot of cases, be overcome and then that person would no longer labeled as having learning difficulties. This would not be the case if determined by IQ.

On the other hand some one with a learning disability will always have that disability.

 

The specific Learning difficulties you quote, They may be diagnosed in people average to above average intelligence, but they are not exclusive to that group of people, If looked for they will also be found in people of below average intelligence.

 

Perhaps there is a professional out there who can give us a definitive answer to this one.

 

 

Not a professional but as far as I am aware, the system for defining learning difficulties by IQ score applies to the US. It was abandoned in the UK because it seemed more sensible to base support for learning difficulties and disabilities on need, not on one's diagnosis. Grouping people according to IQ test scores is not helpful for educational purposes because the IQ test consists of a group of sub-tests each for very different skills. Many children with learning difficulties vary considerably in how well they do on the different sub-tests. So IQ tests can be a useful diagnostic tool in the sense that they can identify what sort of difficulty someone has, but the overall score isn't really informative.

 

It seems that some local authorities use a test score cut off point to inform the decision about whether or not a child gets a statement or a place at a special school. I don't know that for sure, but parents have reported professionals using cut-off scores to determine what sort of support the child is eligible for. I can understand why. Having a threshold like that can avoid accusations of unfairness when you are allocating a limited amount of money.

 

cb

 

 

 

[Sally44]

Not a professional but as far as I am aware, the system for defining learning difficulties by IQ score applies to the US. It was abandoned in the UK because it seemed more sensible to base support for learning difficulties and disabilities on need, not on one's diagnosis. Grouping people according to IQ test scores is not helpful for educational purposes because the IQ test consists of a group of sub-tests each for very different skills. Many children with learning difficulties vary considerably in how well they do on the different sub-tests. So IQ tests can be a useful diagnostic tool in the sense that they can identify what sort of difficulty someone has, but the overall score isn't really informative.

 

It seems that some local authorities use a test score cut off point to inform the decision about whether or not a child gets a statement or a place at a special school. I don't know that for sure, but parents have reported professionals using cut-off scores to determine what sort of support the child is eligible for. I can understand why. Having a threshold like that can avoid accusations of unfairness when you are allocating a limited amount of money.

 

cb

 

BUT, you cannot get a diagnosis of dyslexia/SPLD without an EP/SPLD teacher carrying out Standardised Assessments. And if you don't have a diagnosis you cannot get it in the Statement. I've just had the AR and tried. The EP said that they cannot quantify and specify input from a SPLD teacher for dyslexia because my son does not have a formal diagnosis. This same LEA EP refused to do standardised assessments (because she said she can identify needs and target them using classroom based and functionality based assessments), and has now refused a dx because she has not done standardised assessments.

 

I also presume that anyone can have dyslexia, whether they have high or low IQ.

 

The point about trying to ascertain level of cognitive ability is when you start asking for 'remediation' ie. for professional to put together a programme to help the child make additional progress. Most children with a SPLD make poor progress. This poor progress is assumed to be their 'natural level of progress they make each year'. Having evidence of average/high cognitive ability gives the parent an indicator that remediation should at least be tried.

[JsMum]

Hi JsMum

 

The very link that you included says that learning disabilities start at a IQ of 70 and below.

 

The term Learning Disabilities was introduced as a PC term for Mentally Handicapped.

 

The research that I have done does not put any IQ numbers on learning difficulties only what they may include just about anything, It was more to do with the difficulties and how they inpact on that peason, and as I understood it could, in a lot of cases, be overcome and then that person would no longer labeled as having learning difficulties. This would not be the case if determined by IQ.

On the other hand some one with a learning disability will always have that disability.

 

The specific Learning difficulties you quote, They may be diagnosed in people average to above average intelligence, but they are not exclusive to that group of people, If looked for they will also be found in people of below average intelligence.

 

Perhaps there is a professional out there who can give us a definitive answer to this one.

 

I can see where your coming from its just that for our local council childrens disability team they are saying your child has to have an IQ Below 55 to fit thier criteria as well as other learning disability criterias but I understand now that a learning disability is an IQ below 70.

 

the quotes I gave where what I understood the differences of Learning Difficulties and Learning Disabilities.

 

In America Dyslexia, ADHD ect,, all come under Learning Disability but here in the UK ADHD, Dyslexia are not reguarded as a Learning Disability but a Spersific Learning Difficulty though I know that there is going to be some reviews of the whole definition of Learning Disability in the UK looking around on the internet such as Mencap and Learning Disabilities services.

 

I know it was incredibly difficult to get my head around the difination of Learning Disabilities, and Learning Difficulties.

 

JsMumxxx