Services for children with SEN or disabilities: tell the Government your views!

[HelenMumsnet]

Hello.

We thought you all might like to know that the Government is preparing a Green Paper on Children And Young People With Special Educational Needs And Disabilities.

And Sarah Teather, the Minister of State for Children and Families, has invited views from everyone with an interest in services for children and young people with special educational needs (SEN) or disabilities in England.

All views and perspectives received will be considered as part of developing proposals for a Green Paper on SEN and disability, to be published this autumn.

You can respond with your views here

And, of course, we'd love you to share your views on this thread, too - if you'd like to.

[mycarscallednev]

Our sons Primary School ignored his SEN of a Physical Disability, Diagnosed by Prof. Graham at GOSH, left him to cope with an untrained INA, who in turn left him to cope by himself, as she didn't understand his condition, - the school were invited to GOSH to be 'educated', but they refused to go. In the end we had grounds for DDA. My son now has Post Traumatic Stress Disorder as a result of how school treated him [he's only 6], and now has this to be treated too. They left him floundering and instead of supporting him, they openly critised him, in front of his peers, and their parents.
On the day the Ofsted inspector visited he was told 'not to talk to anyone'.
He is now Home Educated, and is reading, his writing has gone from pre-school level in July to being recognisable, and properly formed, all since September.
He isn't allowed the OT that he needs, unless we travel from Sussex to London [GOSH based OT], as local OT is only available via a school, even though when he was at school he wasn't able to fully access OT, as they refused to buy the equipment. How can all this be right?
We are treated as if we asked for our precious much wanted child to be born with a disability, and therefore should just get on with it alone. It makes me mad!
Our Head was also the so-called SENCO, she had no interest in anything that there wasn't 'a course' for, and if your child didn't fit the box, tough luck.
Its crazy, and I wouldn't have believed it would be happening if I hadn't had to live through it.

[CardyMow]

Get enough SALT and OT's to cover the area they are working in, so that every child that needs this help can get it without a 4 yr waiting list.

Stop all the passing-the-buck that goes on between the PCT and the LEA about who should be providing the funding for pieces of equipment that are needed for a child to access the curriculum. While all this buck-passing is going on, the child cannot fully access the curriculum, and ends up falling too far behind to catch up.

When my DS2 was in pre-school, the school he was starting in was told that he would need : A special chair to help his posture to enable him to write. A writing slope. Access and training to use a laptop as holding a pencil is painful for him. A scribe to help him when it came to written assessments. Wrist supports to try to relieve the pain he gets from trying to write. 15 minutes daily OT from a TA at the school. Has he had any of this? NO.

He is now almost 7yo, in Y2, and I have been told that the school has no funding for a laptop for him, the two writing slopes the school has are being used by older dc 'who need them more', Daily OT has gone by the wayside as there are no TA's to do it with him, the PCT and LEA are still arguing over who should fund his fitted chair and wrist supports, so he doesn't have thse either. And as the school has no TA's, DS2 will not get a scribe for his Y2 SATS, leaving him unable to acheive a level at all because his writing ability is still that of a 4yo's. Desite the fact that he is verbally working on level 2c at home with me.

OH and stop sending the EWO out to arents of disabled/chronically ill dc, we don't want our dc's attendance to go below 85%, but if they are in hospital on oxygen, it's a bit hard for them to be at school!

Train SenCo's properly, so that they have a full understanding of ALL disabilities that they have to deal with, if a child joins the school with a disability that the Senco hasn't dealt with before then GET THEM SOME TRAINING!

[Ilona33]

I agree, the school staff definitely need more training, so they understand ASD more and theyll know how to help the children. My daughter just been diagnosed with asd,( previously diagnosed with complex social communication disorder) and her school helps her a lot with therapies, PECS, SPEECH AND LANGUAGE THERAPY, etc. <br /> And although mainstream school is great, she had to suffer from bullying ( which been resolved) and when school staff was told she has asd, they just said : Im so sorry. ( which shows the teaching staff needs to know more about asd)
I really hope the government won`t be cutting DLA and Carers allowance from us, because we need all the help we can get. Life already hard as it is to our children without the worry over money.

[goingmad77]

Well so far my lad is now 11years 6mths ,And from reception class ive made the school aware there was a problem,also his learning,the way he remembered a wordon a page then next page was not recognising the same word? Many more sufficent reasons,A teacher who cared nothing more for my child i believe than that he was just a disruptive,naughty child and stated in no uncertain terms to me there was 'NOTHING AT ALL WRONG WITH MY CHILD',Despite the evidence was plenty,He recieved speech therapy continously from the word go,still does to this day.He was behind and not moving very fast,All because she had personal beliefs surrounding these behaviour/learning difficulties it was plain obvious to many other people id meetand met from him being atoddler,Yetshe was refusing to even accept there was even a problem.After couple years of him struggling and frustration confusion many of the extra issues we picked up due to being made to struggle and continously being told what he did was not good enough when it was his best,2007 the sameteacherwho was adamantnothing was wrong at all was now faced with facts he was behind alot,Havingmajor daily problems in all areas of school she at this point arranged an assessment,Which showed he was dyselexic,out came the IEP , that turned out later to mean NOTHING. They did not ask my permission nor did i have any idea that he was being assessed where i am entitled to have an input,Not only did they then keep this diagnosis to themselves at school and i was not aware my child had dyselexia until it slipped out shockingly in a meeting in 2009,Still he was not treat any different other than 20 min 1:1 3 times a week,speech therapy He was then expectedto complete and manage just as the average child,I f you understand how dyselexia affects or can affect you you will understand why he was struggling and the spellings he was given as homework were beyond a joke the child was still kearning word sounds and phonics and barely knew the alphabet, didnt know half of the months of the year plenty more evidential reason he could not cope and he driftedthrough the system and school being putdown,told not good enough,stop rushing ,all of which he had no control of ,hes now in secondary school and in 1st month he got a 3day exclusion twice,numerous full days isolated no breaks etc, numerous times have i had topick him upbecause had fight he gets alot of stick for his speech and struggles in class and doesntquite fit in bless him x he has nowonce again been reffered for further assessment and again i was right so had he got help at 5 things wouldnt be so hard for him now, stand need reducing any help like thatas its far from good as it is.

[Peaceflower]

Received an acknowledgement email yesterday . at least I know someone has picked up my contribution!

[Smallmonkfish]

Why are children under 3 not considered for mobility awards?

Have you ever tried to take a baby, a buggy, a sats machine, a suction pump and a feeding pump on a bus along with all the usual baby needs? Simply not possible.

[snoppymum]

You should start all over again by first

1 Reteaching Teachers in ASD / SEN as there is a big issue here with mainstream schools and teachers.

2 More support in schools for parents with children with ASD / SEN

3 Scrap Parent Partnership - in my LEA they are in the pockets of the LEA. Pay volunteer parents an allowance/expenses instead to help other parents a la Dave's "Big Society"

This is a very true statement Parent Partnership is the little brother for the LEA / SEN Team they get all the information and the parents details of the issues and its all reported back to the LEA giving then who you are fighting against (LEA) the advantage of what your (Parents) next move is. I think this is very wrong and a lot of parents are not aware of this that the wool is pulled over their eyes trust me this is fact!!!!

[debs40]

SALT provision or absence of it is a huge issue. It is so tightly tied in with LA budgets that children, who clearly require it, are not being allowed to access it as admitting there is a need, and defining the provision to meet it, will cost money.

So, children (often autistic and often with complex communication needs) are fobbed off with indirect therapy (i.e. some untrained TA doing it) and marginal and limited oversight (if you are VERY lucky) by someone who has any idea/expertise in developing social communication skills.

This is despite the Bercow report's comments on the importance of communication.

It is despite caselaw consistently defining communication skills as just as important as literacy or numeracy.

It is an absolute disgrace.

If you go to see a doctor about a headache, you don't expect her to direct you to her receptionist for treatment because her receptionist has been on a one day course on head pains!!

[bigcar]

mikky, a statement is legally binding, they have a legal duty to provide what is set out in the statement, sounds like you are being fobbed off. Some useful links worth contacting ipsea ACE sossen and if all else fails, there's sendist. Have you been in touch with parent partnership, they can be very good but sometimes they are not as independant as they should be.

[MIKKY01]

pls can anyone help, i have recently moved into liverpool from wales with a statement of sen for my 3 yr old son who hasnt been diagnsed yet but is having difficulty with speech.he requires one to one support as mentioned in the part 3 and 4 but the council are not willing to provide this because they say that their budget is full.i am left with this child, cant work, no school is willing to accept , i need help and dont seem to be gettng i from anywhere. I am alone parent with 1 older son

[Goblinchild]

'Teachers are just not interested in Medical conditions.'

Of course I'm not interested Lucinda, and I've also worked in mainstream schools for over twenty years where ASD children are always misunderstood.
Along with all my colleagues, and those at my son's school.
So you feel that sweeping, negative generalisations are the way forwards

[caketinrosie]

Every child matters? My disabled Autistic children don't matter! I have a child in mainstream who is left to muddle along with little practical support in between classes and minimal during class. She's in the lowest stream in all classes and feels miserable about it. She gets ignored most of the time picked on for the rest. When she was last tested she had no support no advice and was left to fail. My son is unable to attend mainstream high school according to the Ed Psych but the only choice i have is one school 30 miles away. But it's ok because i'll get free transport??!! WTF!! I don't want my child travelling with a stranger, I don't want to have his school day over 9 hours long. I don't want him seperated from his sister, I want him to count! I want him to have choices. I want them both to be safe and secure in school and close to home so that when I need to be there I can be there quickly. Is it really so much to ask?

[MissTired]

come on people if you havent signed the petition please do, and please please share the petition with everyone you know on facebook and suggest this page to all your friends xxx www.ipetitions.com/petition/say_no_to_sen_cuts_nottinghamshire/

[crazymum53]

I think that schools need to be more flexible about the time needed for medical appointments for children with long term medical conditions and disabilities. I do try to make appointments for after school or in the holidays but this is not always possible. Indeed many appointments for school holidays have been cancelled because the doctor is on holiday.
Schools are putting pressure on pupils attendance (at my dds school target is 94%) and this may not be realistic for children with disabilities.
My dd needs medication to be given in school and this can only be done by staff who have attended a recognised training course. Yet I (the parent) have been doing this for years and have received no training at all.

[MrsYamada]

As for the government, PLEASE don't screw up short-breaks. I know people who've worked really hard to improve provision and I'm really hoping funding isn't pulled.

[MrsYamada]

Flowertots: I agree you need to find the right school for your child but I don't think this will be mainstream for everyone. We have found a very good special school with a 'can-do' attitude. We are in a 'bubble' in that ds is in a safe place where people understand and work with him - and I appreciate this will not always be the case - but I would not say we are scared to join the outside world. Infact I'd say we go out of our way to do things to prove we can.

Have to say though, we had a bad experience with mainstream and I would agree with your statement about being able to ship children off to special schools and not deal with them - exactly what happened to us, even though it turned out well.(Did I sit on the fence enought there?)

[bigcar]

flowertots, we haven't been fobbed off, dd3 was statemented at 2 as she has very complex needs. The LEA have thrown every resource possible at her but she needs a different curriculum to the other dcs and a specialist teacher and all the therapists she needs on site. The last thing they wanted to do was put her in a sn school as they don't have any provision in borough for her age group and need and they are notoriously bad for giving out of borough provision. But even they've said they can't meet her needs and that includes the ed psych. Ms can work fine when it's properly resourced and funded but there will always be a number of dcs who that will never work for. Good to hear your dd is doing so well now.

[Flowertots]

bigcar-the whole reason why there is no provision is because they can fob you and your child off and get your dd shipped off to a special needs school so they don't have to deal with her. My dd started in a ms who did not want to help. At the time we did not have a statement for her. We removed her and after a short time at special needs we decided it was not right for her-the parents appeared to almost become institutionalized-were too scared for their children to join the outside world because it was so easy for them in their disability bubble. I found they lacked ambition for their kids, as parents of 5 year olds were saying "my child will never get a job, will always stay at home etc etc".
We found THE RIGHT school for her-that's the key!!! You need to badger SEN teams and local Ed Psy's to find out the insider knowledge. My dd is now learning to read and write and made unbelieveable improvements. Her teachers at special needs said she would never read or write and she's doing it now within a year of being in the right place.
She will always be different, but then again, aren't we all?

[bigcar]

flowertots, there are other ways of integrating children with disabilities than in school. Mainstream just doesn't work for some children, dd3 is failing miserably in ms despite everyones best efforts, there just isn't the specialist input she needs. Surely you wouldn't suggest she stays in ms just as a pet project for the nt children? May be if out of school activities were available to children with disabilites it would be the best of both worlds.

Yes, LEAs should stop fobbing parents off and not giving statements.

[Flowertots]

Unfortunately I believe the complete opposite-special needs schools should be closed down completely.

Special needs children should be integrated into society to prepare them for the real world where not everyone has a disability. By segregating them we do them no favours and non-disabled children grow up without the benefit of learning how differences should be accepted. I speak as a parent of a child who attended both a special needs school and now a mainstream.

LA's should not try and con families out of getting statements by telling them how bad they are and therapies should be available for early intervention. In short-the benefit of the child should (in an ideal world) outweigh the LA's interest in their balance sheets.

[Peaceflower]

Hear hear!

[Agnesdipesto]

This proposal reduces provision in school for children with SEND towards a statutory minimum.'

This is so depressing how many of them ever gave anything above the minimum anyway?

They should draw up a list of their statutory duties and their discretionary spending and only spend anything discretionary (swimming pools, libraries etc) when they have met every one of their statutory duties (to our kids). They won't cut popular things though as that would mean losing votes whereas how many votes do SEN get you?

The High School next to me is getting a massive gleaming 6th form block and yet another primary school is getting a childrens centre (about the 6th in a very small town) - not saying they aren't useful but whenever I have been to them they are overstaffed and underused as it is. Also whats the point in having lots of childrens centres full of professionals diagnosing needs early at 'drop ins' if they do not intend to do anything about the needs once identified.

[StarkAndWitchesWillFindYou]

Please do it!!!!!

[dolfrog]

The problem with the Special Educational Needs is the lack of a professional approach to the diagnosis of the real cognitive deficits, disorders, or differences, our children have.

The diagnostic system is very close to being corrupt, in some instances it is diagnosis to match a support program and not diagnosis with regard to scientific medical research.

The SEN assessment and diagnostic processes need to be taken out of the control of bodies within the education system, and placed solely with the multi - discipline medical professionals who are best able to diagnose the medical and cognitive issues which can cause nearly all SEN problems.

We need to remove teachers from the assessment nad diagnostic process, but they should be able to provide referrals for a full multi - discipline medical assessment.

So called non profit organisations should also be take out of the assessment and diagnostic process. Thye should also be subject to closer scrutiny from the Charity Commission as to their agendas and funding, especially with regard to the endorsement, recommendation or provision of remedial programs. These organisations should provide the best current scientific information with regard to the cognitive deficits which they claim to provide support, rather than not provide this Scientific information because it conflicts with their internal agenda. Some investigation should also be made with regard to the fees they pay out to staff members and consultants in line with an organisations which claims to be charities.

Armed with a clinical diagnosis of a child's cognitive skills deficits and stengths, it is then the duty of the LEA, school,and teachers to adapt their teaching methods to match the SEN child's learning needs.

Many of the assessment and diagnostic procedures are technical and complex and not with the academic discipline of the teaching profession nor a single profession such as Educational Psychologists. It has been stated in a research paper of 2006, that with identical symptoms a child in the UK can get 4 different diagnosis dependent on the type of medical ,professional the child is reffered to. So a multi - discipline medical diagnostic approach to assessments is the only approach to provide a real diagnosis of all of the issues and disabilities or cognitive deficits a child may have.

Currently their are too many self interest groups involved in the assessment and diagnostic process. The children suffer because they do not get the help the need, and when they leave school, and enter the adult world they may not have any idea of the cognitive disabilities they may have, and which employers etc should be aware of so that thye can get the support they need to be able to contribute to our society.