Guerrillamum's Blog


More thoughts on the Green Paper for SEN and Disability…

The green paper for SEN and disability states that those children who currently have a statement, less than 3% of children with SEN, will have an education, health and care plan (EHCP) under the new system. There are also plans to improve achievement for children who are disadvantaged through pastoral care. So far, however, there are only very vague indications about how SEN will be provided for in children who fall into neither of the above categories and have less severe SEN. There will be a lot of children in this lower level category of need! Many of these children will have very real SEN requiring specialist support.

I have commented regularly about the limp and woolly provision currently available to unstatemented children with SEN through the school action and school action plus categories of the graduated response process of our current system for meeting SEN. Yet the new system promises to scrap these classifications replacing them with a new tier of provision. Children will be ‘lumped together’ in this category, with some receiving pastoral care because they are disadvantaged, and others receiving support for SEN through ‘better teaching’ and schools sharing best practice. Also, the voluntary sector will be brought in to carry out so far unspecified roles. Remember, this new system will be implemented by health and education services that have undergone savage cuts and will draw heavily on untrained support from the voluntary sector. I don’t believe it is possible to improve provision for children with SEN and disabilities by cutting specialist services and replacing these with an untrained voluntary sector.

I can see a lot of children who need specialist intervention for their SEN receiving little more than pastoral support if the school has nothing else to offer, leading to misery and failure for thousands of children. How do I know? This is exactly what happened to my son under the deeply flawed but infinitely more robust graduated response of our current system.

The lack of clarity surrounding this is simply not good enough. Everyone has the opportunity to influence these policies by taking the opportunity to make representations to the consultation, and write to their MP to ask how, in detail will the plans be funded and implemented.



NHS told that autism diagnosis in children must improve!

The NHS has been told by the National Institute for Clinical Excellence (NICE) that autism diagnosis in children must improve. You can see the Guardian’s article on the matter here: http://www.guardian.co.uk/society/2011/jan/27/autism-diagnosis-children-nhs-guidance

According to The Guardian, the NICE guidance ‘calls for every child with an autism spectrum disorder to be assigned a case co-ordinator to act as a single point of contact, and to have an individual profile created that sets out their needs.’

Surely they are missing a point? The new guidelines only call for children already diagnosed with an autism spectrum disorder (ASD) to have a case co-ordinator. Don’t get me wrong! I welcome the introduction of case co-ordinators to work with children with ASDs but what about all the other children with equally difficult special needs? I do not think access to a case co-ordinator should be dependent on the child being formally diagnosed, or on any specific diagnosis.

Furthermore the article says that NICE has decreed ‘NHS staff need to liaise more and to engage better with schools, social care providers and voluntary sector organisations.’ They do, but surely they also need to liaise more with parents and families who know their children the best?

A case co-ordinator could be of so much help to families right from the time that concerns are first raised about a child’s condition when they first engage with NHS services. This would result in a diagnosis being made more quickly and in needs being met more effectively. Most parents of children with special needs have to go through a huge learning curve before they can be effective advocates for their children and this process can take years. A case co-ordinator who has experience of how the system works could be such a help to parents and children if they are brought in at a much earlier stage as soon as concerns are raised about a child’s development or condition. This is the time when families most need this help and when they are the most vulnerable. A case co-ordinator could pave the way for a child to access early intervention services. Early intervention is the key to children overcoming special needs at school and in life.

So I say to the new NICE guidelines on autism diagnosis, ‘Yes Please!’, but please don’t discriminate against those children with special needs who do not happen to have an autism spectrum condition, and please bring in case co-ordinators much earlier in the process of the identification and meeting of special needs. It is a fact that most children who have their special needs effectively met have motivated parents who learn to navigate the system for identifying and meeting SEN. Case co-ordinators for all children with special needs who access NHS or special education services would have the effect of levelling the playing field and – (I’m going to use a coalition buzz word here) would also make things much fairer.

If we had been presented with a case co-ordinator when Peter was nine years old, had received his diagnosis and also his statement (that came along straight after the diagnosis), we would have had no use for them. However, the early involvement of a case co-ordinator in Peter’s case would have been invaluable to us and would have saved Peter so much time, distress, sadness and despair and many wasted years at primary school.



In which Guerrillamum ponders on the nature of Inheritance and the government’s ideological cuts…

For those of you who simply wish to read about special educational needs, education or disability issues etc, you should perhaps stop reading now because this post is quite unashamedly political in nature. I was eating breakfast this morning when on Radio 4 I heard yet another government minister/apologist blaming the government’s savage cuts on their ‘inheritance’ from Labour.

It struck me like an epiphany. I’ve got very fed up with hearing this argument recycled, time and time again. Of course they are talking about inheritance because they come from a class in which inheritance (Daddy’s millions) is their birthright, their experience or their expectation. These are people with no understanding whatsoever of what it is like to live in 21st century Britain (don’t forget 19 out of 23 members of the Cabinet are millionaires).

Now, just because I understand now why they think and speak in the way they do, does not mean I feel any less angry or insulted by being patronised in this manner. We are not ‘all in it together’! The society may look big from the top where the Prime Minister and his cronies sit but for people with disabilities and those caring for them our society can be a very lonely place.

My children’s inheritance was genetic conditions, physical, developmental and sensory disability. They are not cushioned from the realities of life by ‘Daddy’s millions’, but they have the same rights to quality of life, family life, and a decent and appropriate education which this government seeks to deny them.

So the next time you hear a government representative or minister speak, listen to the words they use, the callous catchphrases and the spin they employ to try to dupe the public into acceptance of their savagery. Do not be fooled, this is not about saving money to rescue the economy, it is ideological, and it is about deconstructing our public and social structure so that big business can move in and enable those at the top to profit. Today the government is talking about selling off the Forestry Commission. The forests are part of OUR inheritance, for the NATION! Which sector of society do you imagine can afford to buy a forest? Would you rather go to the New Forest or the MacDonald’s New Forest for your holidays (assuming you can afford one this year!)?

How about a catchphrase of my own?

COALITION GOVERNMENT – PUTTING THE GRRR INTO GUERRILLAMUM SINCE MAY 2010!

(And where is the Green Paper for Special Educational Needs and Disability!?)



Guerrillamum’s wish list for the Teather Green Paper on SEN and disability

Over the last two or three weeks you could not miss the dispute over student fees. It has been on our streets, on the radio and on the television. I don’t want to comment on the rights and wrongs of this, but another vital issue in Education is being missed. Nobody has yet marched through Whitehall, occupied buildings or caused a split in the coalition over the issue of Idayah Miller and her disgraceful treatment by the Harris Federation.

Idayah is a symptom of wider principles which are endangered at present. I’ve written before about the lack of safeguards and checks and balances for academies, particularly where it affects SEN. Idayah has been denied a place at the Crystal Palace Harris academy and was told (amongst other things) that in her wheelchair she would take up too much space in the corridor in the event of a fire. The Harris Federation have apologised for the ill judged words of the Head (though I note he hasn’t been disciplined) but crucially Idayah still does not have a place. The only options available to her Idayah are to appeal to the academy itself or to the Minister of State for Education. A recent article from the London Evening Standard can be seen here: http://www.thisislondon.co.uk/standard/article-23903236-idayah-is-a-bright-child-one-of-a-spurned-minority.do

The academy cancelled the appeal and referred the family to the Special Educational Needs and Disability Tribunal (SENDT). Regular readers will know that I warned some time ago that academies do not have the same legal status in SEN Law as Local Authority controlled schools and that SENDT does not have any jurisdiction over them and they could not help Idayah. This leaves Idayah with a right of appeal either to the school, which has already made its views clear, or to the Minister of State for Education. If I were in her shoes I think I would far rather go to a SENDT tribunal (regular readers will know how harrowing I found SENDT!) than go to an appeal with a man who makes dodgy ideological decisions and changes laws he doesn’t agree with using terrorism legislation.

I don’t have first hand knowledge of Idayah Miller or her family and I don’t know about her particular circumstances. All my sources have come from the Press. However, I do have first hand knowledge of what it feels like to be a family with a disabled child or children. You can quite often feel that you are not a part of society and that some of the agencies that are there to help you are actually obstacles to getting the provision you need for your child. I did, however, see some real improvements under the last Labour administration and greater protection for the rights of disabled people i.e the Autism Act, the Equality Act and excellent initiatives such as Aiming High. It’s really worrying to hear the Prime Minister say he wants to get rid of the Human Rights Act and replace it with a British Act reflecting our values. The evidence since his government came to power is that their values include ignoring, marginalising, and removing benefits from those who have disabilities. Social mobility? Not if you are disabled, it seems.

I wish that Idayah had had one percent of the coverage given to the university fees debate. I wish that we could also see the same degree of pressure put on the government as has been used to argue against the schools sports partnership cuts or child benefit. Is it that people don’t care? Or that in financially straitened times people look only to their own needs? What about the Big Society? Or does it not apply to people with disabilities?

The government have a chance to prove me wrong. The Green Paper on SEN is due soon. (Transparency website!!!!!). Sarah Teather has a chance to put some of these wrongs right and lets hope she does.

In the meantime, please re-tweet. Please try to raise the profile for the issues I have raised. If you know somebody famous, or anyone with influence, or who has a big Twitter following (even better!!!) then send this post on to them. Next time this could happen to somebody you love. This is the thin end of the wedge.

At the moment the government is not doing anything about this case (or others like it) because they think nobody cares and they can get away with allowing these organisations to fail disabled children. It’s cheaper.

The Green Paper for SEN and disability is due to be published soon and my wish list would be:

• Inclusive schools admissions policies – schools should not be able to socially engineer their intake, and children with SEN and disabilities should be able to attend mainstream schools or special schools according to their needs
• An independent appeals procedure – independent of the school heads, governors, and of the Minister of State for Education.
• Retain SENDT and widen its scope to deal with appeals from Local Authority controlled schools, academies and free schools (when they come in).
• Retain the statement of SEN and the rights it confers on children. Widen availability of process to identify and make provision for children with SEN because appropriate assessment is currently far too difficult to obtain.
• No selection in state funded schools – (do realise this is a more general wish, probably beyond remit of Sarah T…)
• No devolved funding for statemented children – all statements should be funded properly by the State.

The lack of comment from the Opposition is also a worry and I would like to see some of our Shadow Cabinet getting involved in this very important debate.



‘Experts’, children and inclusion and why teaching is about so much more than just being an expert
November 9, 2010, 10:31 am
Filed under: A few thoughts | Tags: , , , , ,

Our son has been rehearsing for a concert and I have been helping to organise it. The organisation putting on the concert has always been very inclusive and those involved in working with the children are very nice people. However things came to a head last week, when one of the organisers criticised some of the children who had individual pieces to do for not being ‘of the required standard’, and sought to exclude some from playing the parts they had volunteered for. This person was not alone in their thoughts. Others within the organisation, however, leapt to the children’s defence, making clear that all children who volunteered would be included and were appreciated for their talents and all that they brought to the production.

However, the children who were ‘not of the required standard’ were not even children with SEN! The whole experience has left me with an overbearing sense of sadness that I am finding difficult to shift. Everyone else seems to have moved on, which is good, and as it should be and we are all now focussed again on getting the production on to the stage. It should be fun! The children are not aware of what happened, are all enjoying themselves and that is great.

I am still very disappointed with the attitudes of the people who criticised the children in such a negative manner. We may have won this battle but we still have a long way to go to win the war and change people’s exclusionary attitudes. I think you are probably used to hearing positive and upbeat messages from Guerrilla Mum but in truth this experience has left me weary. This is because I know my boys face attitudes like this every day, and probably will for the rest of their lives.

This is part of what worries me about free schools and using experts instead of qualified teachers to teach children. The people who were negative about the children in our production were undoubtedly experts in what they were teaching the children. However they were not trained teachers and, nice as they are, they failed the inclusion test completely. That is the lesson I would pass on to those planning free schools in which teachers do not have to be properly trained.

All of the children in the production are having a positive experience and having fun which is the main thing and what I will try to focus on in the next few days.



Woman’s Hour – so what was it like then?
November 5, 2010, 10:30 pm
Filed under: Radio | Tags: , , , , ,

I would like to say a huge thank you to Jenni Murray and the staff at Woman’s Hour for inviting me to be on the programme today. Never having done anything remotely like this in my life, it was a real adventure! We hadn’t told the children beforehand because we thought it might divert them from their school day, but we needn’t have worried. My husband told them about it on the way home from school in the car but frankly, he says, they were much more excited about going to McDonalds for their tea! Quite right too ….

Having rehearsed my answers to possible questions on Woman’s Hour all week, I waited on my own in an otherwise empty and silent studio for my part of the show to begin. My legs turned to jelly, my mouth went dry and all the carefully prepared answers disappeared. Yes I was incredibly, mind numbingly nervous and despite Jenni’s very helpful questioning I didn’t get to say all that I wanted. Being on the radio is much more difficult than it looks! Fortunately there was another mum on the programme who sounded very calm and said some of the things I would have liked to have said – so thank you to Mencap’s Pam Johnson – I am glad somebody said them, even if it wasn’t me!

However, in the blogosphere I am the mistress of my own destiny. Having failed completely to answer Jenni’s first question, as to why I called the book ‘Guerrilla Mum’, the answer is as follows:

‘The book represents one family’s struggle to get the right support for their children with SEN. This was an extremely adversarial process. The campaign was fought on so many levels; we used the local authority and NHS complaints procedures to get the services our children needed. We appealed (twice!) through the SENDIST tribunal. We also used the local authority’s own policies to justify the things we requested for our children, such as the local authority’s Educational ICT policy when we requested laptops. There was also a battle for the hearts and minds of the teachers and other staff who worked with our children at school. Staff who at first may have seen us as neurotic parents became real champions for our children at school and made an enormous difference to their lives. The book is intended as a guide for other parents to use in their own battles to obtain the help their SEN children deserve, and to spread the word that this is a fight that can be won if you have the right information.’

So that’s it, really. That is the thing that irked me the most. I had let myself get so wound up that I missed my opportunity to say the things I wanted to say and I have felt a bit let down by myself all afternoon. Fortunately for me, I have William my son to put things into perspective for me. He tells me that this sort of thing happens to him all the time, but that the thing is to try to go back and make your point. These are wise words indeed from a boy who really knows what it is to struggle to find the right words. I am lucky that this only happens to me when I go on the radio … so here I am, taking his advice, safe in the knowledge that the main message about the importance of meeting SEN still managed to come across despite everything. And that really is the main thing!

If I am ever invited back, I will send them a letter ….



Guerrillamum on Woman’s Hour!
November 4, 2010, 12:14 pm
Filed under: Radio | Tags: , , , ,

I am going to be on BBC Radio 4’s Woman’s Hour tomorrow at some time between 10.00am and 10.45am to join in a discussion about getting help at school for children with special educational needs. I would love you to listen in. Here is the link to the programme details. http://www.bbc.co.uk/programmes/b007qlvb/episodes/upcoming