BIBIC - opinions/experiences please

[emmasmum]

I have to say that I am slightly sceptical that an organisation which charges for therapy will be entirely honest in it's assessments. We looked at DORE some years ago (before we had any diagnosis at all) and I decided then that I couldn't be sure they would be impartial.

 

However, I've seen BIBIC mentioned quite a number of times on here so I just wanted to know what peoples experiences/opinions are.

 

Emma is 14 and was only diagnosed with Aspergers last year. I also suspect she has auditory processing disorder but audiologist is dragging his heels on an assessment as he says they are setting up a clinic locally. She was assessed by LEA EP at age 6 and was found to be on 73rd centile cognitively but is under achieving at school. We have just appealed against refusal to assess but the appeal was late so waiting to hear if an extention has been granted.

 

One thing I noticed when getting all the information together is that when Em was assessed in 2000 she scored on the 92nd centile for verbal similarities but on the 1st centile for recall of objects (immediate verbal). We have noticed she has poor memory - she can forget entire conversations we've had earlier in the day. Her organisational skills are shocking and it took her months and months (literally) to find her way around school. These will all be impacting on her learning yet her IEP (she is on SA plus) has the following targets:

- to bring any outstanding homework and coursework to learning support lessons in order to receive support

- to complete homework

- to check the understanding of concepts taught

- to remember the content of the lesson

- to contribute to class based discussion work in Health and Social Care

 

Abit of a lightbulb moment but how do these targets help Emma if she's given no strategies to achieve them - they've been the same targets since she started secondary school - give or take!

 

Sorry - I digress.

 

If extention is granted I will need reports and proper strategies - will BIBIC be able to provide these do you think?

 

Thank you

 

Carol

xx

[Sally44]

I looked into BIBIC but have not gone in the end. Simply because I thought I had more time and I don't as I'm back in the SEN assessment process again.

 

My understanding of what BIBIC will do, is that they will see your child and observe and assess them (not sure what assessments they will do). From what they find they will recommend to you the next steps to take. So they may recognise that she has poor short term and/or working memory and will make suggestions about that and can refer you to the relevent specialist.

 

What BIBIC will probably do which is helplful, is that they will see the child and get an overview of the whole child and their difficulties. They will help you identify what the difficulties are and which professional relates to which difficulty. So after seeing BIBIC you should have a clearer idea of where the difficulties are and a clearer plan and what to do next.

 

Regarding IEPs. Yes you are absolutely right. The targets sound great, but they are not SMART and there is no way your daughter is able to meet them. Targets are not meant to remain the same term after term. If they are not met then the target has to be looked at again and either altered in its aim or how it is achieved or the school calls in professionals to look at this difficulty again.

 

Have you contacted your parent partnership at your local authority? They support parents of children with SEN and can come to your home/school and you can see them in their offices too. They should know about IEPs being SMART. Ask them their opinion, and ask them to come with you to the next IEP meeting. Or they may say to write to the school now to say the targets are not SMART.

[Sally44]

My son has auditory processing disorder. My understanding is that they cannot actually diagnose or treat it. What they can do is rule out any other kind of hearing difficulty. That is what they did with my son. Then they asked me alot of questions, alot of them were relevent for him. So they wrote a letter daying that his hearing was normal but that his reported hearing difficulties could be down to an auditory processing disorder which they are unable to diagnose or treat. So I would go back to them and ask that. Can they rule out anything else. What is their criteria for auditory processing disorder, can they diagnose and if not what can they say.

 

There is a private clinic in London, the Sound and Light Centre that does take NHS referals. I asked my GP for the Trust to fund treatment there and my GP supported me. However surprisingly when he put in this request for funding the Trust found an OT that had been trained in auditory integration therapy and she came and my son had a programme of that last year. Both myself and school noticed a good development in all areas. Obviously we don't know if that was down to the AIT, there is no way of knowing. I've asked for AIT again during the summer holidays.

 

If your daughter's short term memory is so poor how is she being supported in school?? Does she manage to move any learnt information from short term into long term memory - I presume she does have memories from a long time ago?? Have you raised this with the paediatrician incase there is any medical reason for this or a need for a scan or other medical assessments??

 

Short term memory is a major factor in learning difficulties. As you've already said, it does not mean low cognitive ability, but she will struggle to learn and retain learning. Is she independently reading and writing? This is a specific learning difficulty and from my experience the LEA are not going to want to have that identified and itemised in the Statement because of the funding implications.

 

But I would contact the schools Educational Psychologist (after you've spoken with the PP), and tell them that she has had the same IEP for xxxx terms. And talk to the EP about your daughters poor working memory and ask how your daughter should be supported in school and with homework and what strategies can school and home use to improve her memory.

 

You want to be thinking about all kinds of memory games and play them at home. When you go shopping ask her to remember something you need to buy and then ask her if she remembers it. Lots and lots of practise. It sounds like she does not have a work networking problem because she understands word similarities. A child with poor memory due to networking problems is because they hear a new word and cannot link it to any other words or concepts they already know. So that new word just gets lost in the ether because the child does not know 'where to file it'.

[JsMum]

Positive experience for me, I went to Bibic because of the poor services I was recieving from my local authority, I did have support from pyschologists and psychiatrists but all we where on where waiting lists for provisions and services, in the end I went to Bibic for urgent support, I was at a very low web at the time and to be honest they really listened and supported us, though they dont dx they can offer a very tailored therapy programme, I had consistant support via Email, and telephone and J has been with them for over three years, they where the ones who gave me the confidence to stand up for Js needs and he does now have most of his needs met due to their involvement, we are now fighting for social care support but I am more independant now and have accessed more services I think it is a very valuable service and children in need paid for Js assessment and therapy, so for us it didnt cost anything, due to been on low income so the centre isnt about profit, it wants to support children and their families and its just done that with us.

 

Recommend you download their video and research further in to it, J was referred for sound therapy due to having Sensory Intregration Disorder but its got a bit technical as he is now in a specialist school and its fitting it in.

 

I personally cant praise them enough, however you have to experience it yourself to get your own prespective.

 

We are still intouch with Bibic and we still recieve support if we need it, it is for as long as your needs the service.

 

JsMumxxx

 

[emmasmum]

Thanks everyone.

 

There is an auditory processing clinic at GOSH and they have designed a battery of tests for it. A referral has to come from an audiologist from the local health authority. Ours did pre-testing which highlighted the auditory neuropathy and we were told that this was likely to be the cause of Emma's problem and the fact she had AN ruled out APD. However, I since emailed Tony Sirimana at the GOSH clinic and Dylis Treharne at Sheffield Uni (who also tests for it) and both said Emma should be referred on for testing. However, now local audiologist says they'll be doing the tests locally in July so wait for that. She does have borderline hearing loss and auditory neuropathy. The audiologist said the only treatment they'd recommend is the edulink (a type of hearing device) and we already fought for that to be provided for Emma when she was diagnosed with AN.

 

We don't have IEP meetings at school. SENCo says there are simply too many pupils who have IEPs to have meetings, but I have requested an urgent meeting after Easter so will get in touch with parent partnership. Our local autism outreach have also offered to come along to the meeting.

 

She can read well and writes well - her spelling is pretty good. She cannot seem to extract relevant information from text or spoken word though, which I'm sure is holding her back. She has some support in lessons (ie: an LSA is in some of her lessons because they are lower sets) and dropped a GCSE to do "study skills" but the report for that (from LSA) says that she uses the lesson to complete homework and if she's finished that is encouraged to read or practice her research skills. It then goes on to say that she needs to be more organised and bring the correct books to this lesson - no joke!

 

Thanks for the input - if Children in Need are funding then I guess that's good. Re: that Sound and Light therapy I have heard that Cauldwell trust fund that.

 

Carol

xx

 

 

 

 

[Sally44]

A speech therapist can very easily assess her to see what information she gains from written or verbal information. Has your daughter been assessed by one?? She should have been seen if she is on IEPs. What did they find about this difficulty? If there is nothing, then I would phone up the SALT and speak with them.

The LEA SALT has assessed my sons ability to retell a story he has been told. He was tested to see if he could answer specific questions about that story. He was tested on inference to see if he could gain information that was in the story but was more subtle. He was tested to see if he could predict outcomes etc.

 

[Sally44]

Also have a look on this site www.schoolbehavior.com.

Look at executive functions disorder. This is a USA site, but from your post your daughter may have difficulties with executive functions.

[bensmum2]

I've just received all the leaflets from BIBIc after someone on here told me about it, and i must admit , it seems a good money making scheme for someone, it's free but you pay £50 for "admin" each time, then you pay to see each person you see, it all sounds a bit iffy to me, sorry and no disrespect to anyone meant x

[emmasmum]

Well Em's been on school action plus for years but no mention of a SALT - but she did actually see one last year as part of her CAMHS assessment for Aspergers.

Unfortunately, her brief, from the psychologist was to advise whether Emma's social problems might be down to her auditory neuropathy rather than a social communication disorder, so she tested very little to be honest, but here are some comments from the report:

 

Emma was able to define 3 out of 5 abstract words correctly which is age appropriate.

Emma was presented with a problem verbally and also in writing. She found deduction difficult and was unable to successfully work out the answer which required "reading between the lines".

Emma was able to correctly say how four out of five opposites were also alike which is age appropriate.

 

That's about all it says!

 

Will check out that other site you mentioned. Thank you.

[Sally44]

I've just received all the leaflets from BIBIc after someone on here told me about it, and i must admit , it seems a good money making scheme for someone, it's free but you pay £50 for "admin" each time, then you pay to see each person you see, it all sounds a bit iffy to me, sorry and no disrespect to anyone meant x

 

The problem alot of parents have is that they cannot get the school to refer their children, or have to wait years for an NHS referal. A £50 admin fee is not just for admin. It pays for you to see someone experienced who can give you a clear picture of your child's difficulties and point you in the right direction. The real market price of a one/two day assessment is around £2500. A private report will cost around £1000, so £50 compared to that is nothing. And although you may still need to go and get private reports after seeing BIBIC, they will have helped you identify what the major difficulties are, and therefore help you decide what to do next. It is a long standing recognised charity. I don't see how this is a money making scheme at all. For £50 they also put together a home and school programme that you can follow. If you have found somewhere you can get all that done cheaper, then please let me know! And because they are 'independent' ie. no vested interest - their opinions and findings are very useful because they will have identified the child's 'needs'. So if a parent ends up at tribunal they can use BIBICs findings as evidence of what their child needs in school.

[Sally44]

I have to say that I am slightly sceptical that an organisation which charges for therapy will be entirely honest in it's assessments. We looked at DORE some years ago (before we had any diagnosis at all) and I decided then that I couldn't be sure they would be impartial.

 

However, I've seen BIBIC mentioned quite a number of times on here so I just wanted to know what peoples experiences/opinions are.

 

Emma is 14 and was only diagnosed with Aspergers last year. I also suspect she has auditory processing disorder but audiologist is dragging his heels on an assessment as he says they are setting up a clinic locally. She was assessed by LEA EP at age 6 and was found to be on 73rd centile cognitively but is under achieving at school. We have just appealed against refusal to assess but the appeal was late so waiting to hear if an extention has been granted.

 

One thing I noticed when getting all the information together is that when Em was assessed in 2000 she scored on the 92nd centile for verbal similarities but on the 1st centile for recall of objects (immediate verbal). We have noticed she has poor memory - she can forget entire conversations we've had earlier in the day. Her organisational skills are shocking and it took her months and months (literally) to find her way around school. These will all be impacting on her learning yet her IEP (she is on SA plus) has the following targets:

- to bring any outstanding homework and coursework to learning support lessons in order to receive support

- to complete homework

- to check the understanding of concepts taught

- to remember the content of the lesson

- to contribute to class based discussion work in Health and Social Care

 

Abit of a lightbulb moment but how do these targets help Emma if she's given no strategies to achieve them - they've been the same targets since she started secondary school - give or take!

 

Sorry - I digress.

 

If extention is granted I will need reports and proper strategies - will BIBIC be able to provide these do you think?

 

Thank you

 

Carol

xx

 

 

I just wanted to comment on your feelings that any therapist you pay for is not going to be 'entirely honest'. All professionals do have a code of practice and ethics. They don't just put anything in a report. There has to be assessments and recommendations made against the findings. TBH from the other side you have LEA/NHS professionals who are restricted in what they can recommend due to their department's budgets. So you don't get an 'entirely honest' picture from that side either as to what your child really needs due to the funding implications. Everyone involved should be working for the benefit of the child.

 

Regarding your daughters difficulty as assessed by the SALT. That sounds like inference difficulties. Having found she has difficulties in this area your daughter SHOULD have been fully assessed. Why has that not happened??? So I would phone the parent partnership and get them supporting you and discuss with them your concerns. Then have a sit down and write a plan of action which will include who you are going to write to. You can always phone them first (eg. phone the SALT department and ask to speak with the head of the department, and discuss your concerns with them and ask why your daughter was not automatically referred for further assessments and ask them to make arrangements to assess all aspects of her speech and language and social interaction skills by a SALT experienced in both Aspergers and speech disorders. After the discussion put it all in a letter ie. your concerns and what the SALT said and send it in to them. That letter is the only evidence you have of what was discussed and agreed. From now on get everything in writing. Anything verbal is of no use to you because it cannot be proved.

[JsMum]

 

 

The £50 is a deposit and when you no longer want Bibic to support your child the money is returned to you.

 

I have not paid £50 everytime we attend either, we have paid a one off £50 admin charge which is refundable once you no longer require the support of Bibic, if you need further information on costs and what Bibic do please contact them.

 

Bibic is certainly not Iffy.

 

JsMumxxx

 

[emmasmum]

It was really just a question and it seems like I was misguided.

 

If Tribunals will accept their reports then they must be accurate.

 

Thanks for the info - I just wanted som reassurance.

 

BIBIC have changed their processes according to the info they've sent me. The £50 is now a non refundable admin charge, but I still agree it's excellent value and like you say may point you in the direction of an appropriate therapist rather than clutching at straws.

 

Years ago we consulted a private EP who I found on the internet. His report was flawed - it remarked on Emma's poor reading ability but in the same report gave the reading ages as two years above her chronological age. The EP didn't notice that Emma asked him to repeat almost every question, even though we were in a quiet room at home and there were no distractions. When I pointed these things out he amended the report to reflect them, but I just didn't trust it, so felt it was money wasted. So I guess once bitten twice shy really.

 

Thanks again - the comments have been really helpful.

 

Carol

xx

[wasuup]

Hi Emma

 

My son has recently been assessed by the school EP and his age in terms of scores and percentiles varied from the 2nd percentile age 4 year 10 months up to the 99th percentile age up to 10 years and 7 months. He is 6 next month. He has got a diagnosis of dyspraxia from the paed and scored on the 1st percentile for this and has just started with the CAMHs assessments for ASD.

 

He also has a low score on his immediate verbal memory like your daughter. I was wondering if it was part of his dyspraxia? Do keep in touch in regard to your daughters assessment and let us know how you get on.