Paces

The emotions of labels: a parent's tale

Some writing just gets to the heart of it. The impact of it. The emotions of labels.Doesn't matter what impairment your child has.

Violet is herself visually impaired, a "Mum of 2, wife of one.  Disability campaigner. Novice Blogger and tweeter and expert chocolate eater!" she says. One of her children has Asperger's syndrome. Her blog post "High Functioning Autism vs Aspergers: The emotions of labels" is about her response as a Mum. 

Look, here's an extract, but just take a moment to go and read it for yourself.

On the way home on the bus it all suddenly hit me.  It was real, written in black and white. I realised it would never go away.  I had subconsciously been hoping that they would say there really was nothing and that B would eventually grow out of the difficulties, challenges and unique behaviour.  I didn’t feel the relief I had expected to feel.  That, in itself, caused feelings of confusion.  I felt sad and upset.  I felt like we had all been given a life sentence to something we didn’t understand and at that time, knew very little about.

On top of all those feelings I felt guilty and confused about feeling the way I did.  I want to talk a bit about the guilt.  I really struggled to relate the very real emotions I was feeling as a Mum with the values I believed in as a disabled person and had worked towards promoting for a large part of my adult life.

As a disabled person I believed (and still do) that all people have value and that we all have equal rights irrespective of impairment or health conditions etc.  .... 

So, why did I feel sad?  B was still my Son, he wasn’t changed in any way, he wasn’t worth less just because he now had a new label.  Why did I feel like my world had been turned upside down?  I was still his Mum, I shouldn’t be feeling sorry for him or myself.  Disabled people didn’t want pity.  As a disabled person he deserved rights and respect not pity and sadness.  At that time I did feel sad and because I felt sad I felt guilty.

Thanks to Special Needs Jungle for drawing my attention to Violet's terrific piece.

Belated farewell to Dr Sonia Sharp - heading down under to Victoria

Sometimes news travels very slowly. We have only just learned of Dr Sonia Sharp's move from Sheffield to Victoria, Australia. Are there parents and conductors active in Victoria?

This is from the City Council website in March 2012.

"Dr Sonia Sharp is leaving Sheffield City Council after being personally asked to lead on services for young children for the State of Victoria, Australia - a more senior role than the one she currently holds.

She was appointed to this senior government role because of the innovative work she has done here at Sheffield City Council for the last four years, in particular the work done to create integrated services for early childhood development.

One of her first tasks will be to establish Multi Agency Support Teams (MAST) similar to ones she has been instrumental in setting up here and which have significantly improved child safety, health and early learning across Sheffield.

Four years ago the Australian government passed legislation to make its children’s services integrated and while good work has been undertaken, there is still significant opportunity for improvement.. Dr Sharp was singled out as the person to lead this work following a global search across countries including Canada, America, New Zealand and the UK.

An announcement will be made at a future date about establishing any replacement for the role of the Executive Director of Children, Young People and Families. "

Read more on the City Council website Children's leader to head up services down under

The Sheffield Telegraph reported the story on 23rd March, though the headline writer's ignorance of her role (Executive Director -  Children, Young People and Families) does not reassure:  "Education chief heads to Australia".

Two phrases. Opposite poles. What do they mean for education and upbringing?

Two phrases have been rattling around in my head. I'm just going to share them with you - and maybe come back later to expand on my own thoughts.

The first is ... "educated beyond their intelligence";

The second is .... "the transformability of human potential".

To put them both into their immediate contexts (emphases mine).

The first is from an (otherwise forgetable) article in the Guardian "What's the point of social mobility?" by Zoe Williams:

" ... my new theory; just as privatised medicine leads to the over-treatment of the rich and under-treatment of the poor, private schools over-educate the rich. This leads to many of them being educated beyond their intelligence."

The second is from a posting on Andrew Sutton's blog:

"Take just these two, the transformability of human potential as product of upbringing and education and transfer of physical disability out of medicine and health. Together they take you beyond the weak notion of 'support'. Advocate instead that disabled children need to be brought up, educated, taught, as do all other children – though not always necessarily in the same way.

Search this blog: Just repaired the search function by adding TypePad's own search widget. Give it a try now. As a test run, try a search for "Hari",

Training teachers of children with cerebral palsy - what you don't need to know

First, let me say it again: it is not possible in the UK to train to be a teacher of children with cerebral palsy.

Second, let me give you an instance of a description of cerebral palsy:

Cerebral palsy is caused by injury or developmental disturbances to the immature brain and leads to substantial motor, cognitive, and learning deficits. In addition to developmental disruption associated with the initial insult to the immature brain, injury processes can persist for many months or years. We suggest that these tertiary mechanisms of damage might include persistent inflammation and epigenetic changes. We propose that these processes are implicit in prevention of endogenous repair and regeneration and predispose patients to development of future cognitive dysfunction and sensitisation to further injury. (Source: Lancet Neurology) - my italics

Just let me run that past you again: leads to substantial motor, cognitive, and learning deficits ... developmental disruption .... predispose patients to development of future cognitive dysfunction ..

The word "patients", of course, is a giveaway that the origin of the description (Lancet Neurology) is rather a medical than an educational one. How much more interesting then is it to find in the description  cognitive, and learning deficits ... developmental disruption ... future cognitive dysfunction.

In other words, for the child with cerebral plasy, their 'motor deficit' is intrinsic to who they are and how they see themselves, as learning, developing individuals.

So now what does the DfE have to offer by way of training of teachers of these children? In "SEN and disability skills: Core skills in special educational needs and disability" the official view is expressed this way:

All teachers will have pupils with special educational needs (SEN) and/or disabilities in their classes and it's essential that they know how to help these pupils fulfill their potential.

Trainee teachers should have the opportunity to develop the core skills that enable them to teach all learners.

And what are these core skills?

• planning and teaching for inclusion and access to the curriculum
• behaviour management, and an awareness of the emotional and mental health needs of pupils (to build their self-esteem as learners)
• assessment for learning (learning skills)
• an understanding of when professional advice is needed and where to find it.

No mention whatever of an understanding of the nature of the disability. Clearly, what trainee teachers (and qualified teachers for that matter) do not need to know is anything useful about the condition that is so integral to the child's personality, sense of selfhood and development as a learner.

What don't teachers of children with cerebral palsy need to know? Anything whatsoever about cerebral palsy.

What, of course, every parent should know about - even if they choose something else for their child - is the system of schooling and upbringing known as conductive education, whose qualified professionals have spent 3, sometimes 4 years in training, gaining an understanding of all that is necessary to the teaching and upbringing of a child with cerebral palsy.

 

Support & Aspiration - Progress & Next Steps: selection of first responses

A selection of irst responses garnered from Twitter under hashtag #SEN :

Guardian article "Special needs education reform offers hope and anxiety for parents"

Ambitious About Autism "Our statement on Government’s SEN Green Paper response"

IPSEA: "Initial views on the Government's SEN Green Paper Response"

BBC News: "Special needs budgets to be controlled by parents"

Every Disabled Child Matters: "Government denies ‘single plan’ to disabled children with health and social care needs"

NASEN: SEND Green Paper:Next Steps  NASEN catches well the wider import and context and it's worth quoting in full:

"The Next Steps document should be read alongside details of some of the other significant changes that are also taking place, the proposals set out in the School Funding Reform document, the changes to the National Health Service, the raising of the participation age, the significant changes in local authorities and the growth of Academies and Free Schools, will all impact on our most vulnerable young people.

More if/as they arise.

 

 

 

 

Support and Aspiration: DfE publish 'Progress & Next Steps' document

This just published and taken straight from DfE web site:

This report sets out a summary of the key responses to the consultation questions in Support and aspiration, current progress and our further plans for the vision in the Green Paper, in which:

• children’s special educational needs are picked up early and support is routinely put in place quickly
• staff have the knowledge, understanding and skills to provide the right support for children and young people who have SEN or are disabled, wherever they are
• parents know what they can reasonably expect their local school, local college, local authority and local services to provide, without them having to fight for it
• children who would currently have a statement of SEN and young people over 16 who would have a learning difficulty assessment have an integrated assessment and a single Education, Health and Care Plan which is completed in a shorter time and without families having the stress of searching to get the support they need
• parents have greater control over the services they and their family use, with:
  • every family with an Education, Health and Care plan having the right to a personal budget for their support
  • parents whose children have an education, health and care plan having the right to seek a place at any state-funded school, whether that is a special or mainstream school, a maintained school, academy or Free School.

There's a DfE Press Release here, too.

Here is IPSEA's initial response.

How many children have SEN? Again.

Actually, I was googling "Brinks-Mat" and "Stephen Lawrence". Links between criminals and detectives in the two cases had been mentioned on BBC TV, last Saturday, as I was making myself a slice of cheese on toast for breakfast.

Searching for something quite different, in other words, as I find often happens Google threw up "Can 20 per cent of schoolchildren really have special needs?" - an article by "writer, biographer, journalist and broadcaster" Peter Stanford in yesterday's Daily Telegraph.

20% is some sort of average. Peter Stanford points out the difference between Richmond upon Thames (11.8% of primary pupils on the SEN register) and Liverpool (22.6%). On this blog, in October 2010, I noted DfE statistics that in primary schools boys overall were much more likely to be registered as having special educational needs (25.4% with or without a statement) than girls (14.3%): "Are we failing 1 in 4 boys said to have special educational needs?"

I concluded:

I don't know about you, but it strikes me that if as many as 1 in 4 boys have "some form of special educational need' then there is something seriously wrong with our perspective on schooling or on children or on special educational needs or on all three.

Peter Stanford, having asked the question, an important one in my view - perhaps the most important one in the five billion pound (and more) industry that is SEN - seems as perplexed as to the answer as anyone. "But why, if numbers of statements are falling, does the money spent on the system continue to rise?  ... No one seems clear about what is going on, least of all anyone at the Department for Education."

Pointing the finger in turn at parents or teachers or local authorities or money, reviewing possible explanations, hardly seems satisfactory. Perhaps it's the whole system, the whole apparatus, the whole concept? In 2005, even Baroness Warnock, who helped devise the SEN system, repudiated it.

In a blog posting on her website, Special Needs Jungle, author,former television journalist and Mum, Tania Tirraoro, who was interviewed for the Telegraph article, sets out "What I really think".

What I said when speaking to Peter but didn’t make it into the piece, was that I believe that the pressures of today’s society on children, parents and teachers are immense ...

(Some children) may or may not actually have special educational needs to start with, but if their home life is insecure and they live in poverty, it is sure to have an impact on their learning. They may just need attention and nurturing to give them self-esteem and confidence in themselves.

Tania is surely right, as you must read for yourself. But I still cannot bring myself to think it right to categorise 1 in 4 boys (never mind 1 in 5 children) as having a 'special educational need'. The term, the concept, the whole system is unwieldy, inefficient and does not serve the education of children, their parents or those who would teach them.

 

Some first responses to Queen's Speech - SEN

While we wait until next week, when we are promised DfE will put some detail, here are a few first responses to the Queen's Speech. If you know of more, please leave the link in a Comment below.

Nasen (formerly the National Association for Special Educational Needs): "Nasen welcomes the announcement that proposals outlined in the Green Paper will be moved forward during this session of parliament."

Follow Your Dreams - CEO Sue Sugarman's response to the Queen's Speech: "Although I don’t see how these changes give more “choice” to families, I certainly see the benefit of making the process simpler."

IPSEA: "IPSEA welcomes the aspiration of the Government ...  However, IPSEA’s advice lines and casework are already throwing up problems in local authorities’ Pathfinder pilots of the processes which the Government intends to set out in the Children and Families Bill"

Mencap: "We now have serious concerns about the Government's desire to address the crisis in social care and move beyond the limited remit of the draft Bill. People with a learning disability and their families are increasingly unable to live full and independent lives".

Nursery World (has several quotes from other children's organisations): "Many of the proposals have been outlined by ministers previously".

ACT Now for Autism: "Act Now For Autism fears that once again children with autism, many of whom currently don't have a Statement, will continue to have their complex needs ignored"

EDCM (Every Disabled Child Matters) "Srabani Sen, EDCM Board Member: "However, we are deeply concerned by plans to restrict access .... We are concerned that this will leave many children with social care and/or health needs without support".

Scope: "We are, however, pleased that the Government has recognised the need for greater support for children and families, particularly disabled families, and plans to develop a Children and Families Bill."

NAHT (National Association of Head Teachers) Russell Hobby, general secretary: “We welcome giving parents a sense of control and choice ..."  [I have to say, don't you just love that "... sense of ... "?]

 

 

Queen's Speech & SEN - more next week

We can, next week, expect DfE Ministers to set out their detailed response to consultation on the SEND Green Paper "Support and Aspiration" and a timetable for what they are describing as the biggest reform of special education in 30 years.

In a DfE press release, accompanying the Queen's Speech to Parliament yesterday, the Minister, Sarah Teather, says, "In our Green Paper, Support and Aspiration, we set out plans for the biggest SEN reforms for 30 years – giving parents real choice and joining up health, education and social care services." (In fact, the SEND Green Paper does not set out "real choice" for parents when it comes to choice of school; as a careful reading shows, it sets out arrangements for expressing a preference; not at all the same thing, but let's not quibble here just now.)

Yesterday's Queen's Speech, which sets out the Government's proposed legislative programme for the coming year, announced "My government will propose measures to improve provision for disabled children and children with special educational needs." (Full text: Guardian)

A Children and Families Bill, to be introduced "early in 2013", will cover SEN, adoption, family law, shared parenting and the Office of the Children's Commissioner. The key measures of the SEN element will be:

• replacing SEN statements and Learning Difficulty Assessments (for 16- to 25-year-olds) with a single, simpler 0-25 assessment process and Education, Health and Care Plan from 2014
• providing statutory protections comparable to those currently associated with a statement of SEN to up to 25 in further education – instead of it being cut off at 16
• requiring local authorities to publish a local offer showing the  support available to disabled children and young people and those with SEN, and their families
• giving parents or young people with Education, Health and Care Plans the right to a personal budget for their support
• introducing mediation for disputes and trialling giving children the right to appeal if they are unhappy with their support.

The SEND Green Paper was published in March 2011. In September 2011, DfE announced arrangements for 20 'pathfinder' projects, covering 31 local authorities, to pilot the Green Paper reforms. "The interim evaluation will be published in autumn 2012 and final evaluation in 2013. The work of the pathfinders will continue to inform the changes we make to legislation through the Bill."

And that's about it. You can read more on the Department for Education website, where there are all the links mentioned above: "Children and Families Bill to give families support when they need it most".

Me? I'd like to see a Bill setting out truly radical changes in the education and upbringing of children with cerebral palsy - and I'm talking training, pedagogy and curriculum as well as the role of local authorities in assessment, provision and funding.But that's a debate for another day. Alternatively, you can read Scope's first response, in the form of a statement from CEO Richard Hawkes "Scope responds to the Queen's Speech".

We'll have to wait and see the detail. The measures for extending assessment and planning to 25 years particularly interest me, given Paces' long-standing commitment to achieving 'independent adulthood as active citizens' - and how that provision is to be funded. "Ambitious About Autism", "welcomes the commitment made in today’s Queen’s Speech to extend the legal right to educational support up to the age of 25 for young disabled people". On the other hand, these provisions need to relate to the provisions of the also-proposed draft bill to modernise adult care and support, about which Mencap has this to say "We now have serious concerns about the Government's desire to address the crisis in social care and move beyond the limited remit of the draft Bill. People with a learning disability and their families are increasingly unable to live full and independent lives".

To end this post on a positive note, then. This, which I agree with, from Mark Atkinson, Director of Campaigns, Policy and Research at Ambitious about Autism on extending entitlement to 25 years: “This reform has the potential to revolutionise the life chances of tens of thousands of young people with autism who are currently denied access to any educational opportunities beyond school."

More next week ......