Sayonara, School Action and School Action Plus

Debs writes….

senreform3The Government is proposing to replace the current categories of School Action and School Action Plus with a new single early years and school-based SEN category.  This will mean that your school of choice will have to comply with clear guidance from the Government on the appropriate identification of pupils with SEN.  This guidance will include a clear process for identification and assessment of pupils, setting objectives for pupils, reviewing progress and securing further support.  This will be set out in the new SEN Code of Practice  – an indicative draft of the Code of Practice (COP) is already available.

Take a look at the Code Of Practice, specifically Section 5.4 looks at Identifying Needs, 5.5 looks at The Four Primary Areas of SEN and 5.6 covers Additional SEN support in settings.

Tania and I have written about the draft Code of Practice in previous posts which can be read here and further views here

One paragraph in 5.6 leaps out to me as a parent :

“It is the responsibility of educational settings in consultation with parents, and, where appropriate, the young person, to decide whether a child or young person requires Additional SEN Support. They must ensure that children and young people who receive Additional SEN Support have an identified SEN and that their progress has not been hampered by weak teaching or poor attendance”

Does your school consult with you?  Do you know now if your child is School Action or School Action Plus?  Did your school involve you in the decision to place (or remove) your child in this category?  Do you think your school will admit that your child’s progress has been hampered by weak teaching?

The Ofsted review of SEN (2010) found that nearly one fifth of the schools visited suggested that they provided additional SEN support when, in other schools, such provision was regarded as the norm.

Therein lies a huge part of the problem.  We all know there are schools where the staff will do all they absolutely can to ensure your child reaches their full potential and then there are schools which prefer to lay the lack of development at you and your child’s feet.  I am very fortunate in that all three of my children are now in schools that take the former stance and not the latter.  However, I do personally know of schools where there is not a chance in a million that they would ever admit they were perhaps the problem.

Ofsted reports do not always reflect the true representation of SEN in schools – we all know of parents asked to keep their child home for the day Ofsted are arriving or their Ofsted questionnaire somehow not making it home.  Would these schools be holding up their hands to say “oh sorry, some of our teaching is a bit weak”.

The proposed removal of School Action and School Action Plus is part of the Children and Families Bill.  After considering the Ofsted review of SEN (2012) and the Lamb Inquiry (2009), the Government believe the current system emphasises labelling children’s need according to the support  needed rather than the outcomes sought for the child and can lead to children being unnecessarily labelled as having SEN.  It also found that ‘there is a risk that the use of the SEN label itself leads to lower expectations or less vigorous intervention.

beaconThe Lamb Inquiry (20091) reported that SEN can sometimes be ‘unhelpfully collated’ with falling behind, and this may have contributed to the growing number of pupils at School Action and Action Plus.   Did you know that at the end of Key Stage 2, August-born pupils are 60 per cent more likely to be identified as having SEN than September-born pupils?

The Government believe that removing the need for a label of SEN, will challenge schools to improve the quality of teaching and learning for all pupils but what do you think?

Once again, we come back to the culture change needed.  The new Children and Families Bill and indicative draft Code of Practice do not totally reflect the aspirational Green Paper that so excited so many of us.  However, it is still a draft and as a mum, my main concern as I read through them is this tells us what the goal is but not we actually get here?”

What about the very basic communication to families and practitioner of the proposed changes.  If we can’t get that right, how do we propose to get all of the changes right?  Have you heard about the changes in your LA?  Take our quick survey and let us know – we will be sharing the results with the Department for Education.

There will always be great schools, management, LA Officers and staff (our Beacons of Good Practice) but there will also always be poor schools, management, LA officers and staff.   As long as that fact does not change, then does it matter what they call the provision of additional SEN support in settings?  What do you think?

Draft SEN Code of Practice: Further views

Debs writes….

As the Indicative Code of Practice was published, I was in Guildford delivering Early Support’s Key Working in Practice capacity building training.  I was lucky to have ten amazing ladies attend, all of whom understood the benefits of key working and working in partnership and wanted to see this working in their own areas.  I walked away from the training feeling really positive about what the future could look like.

After a long journey home – does the M25 ever NOT have roadworks? – I sat down and started to wade through the new draft CoP and regulations.

Edward Timpson - junior minister in the Department for EducationI was initially hooked by the line in 2.1 Introduction (A Family Centred System) “Parents know their child best” and I would like to thank Mr T for getting this line into print – it was long over due.  We don’t always claim to be an expert in our child’s diagnosis; we merely claim to be an expert in our child.

However, as I progressed through the new documentation, I started to feel a tad unsure.  It sort of feels as if “this is the goal” but there is no detail on what steps will need to be taken to reach that goal, nor does it feel as if there is any real understanding of the huge culture (and operational) changes the LA & PCT staff and families are facing.

2.3 Parent Partnership Services

“These services should be available to all parents of children and young people with SEN”.  Now, before any PPS staff reading this start shouting at their PC or phone, I happen to be a fan of Parent Partnership Services, I think they offer a great deal of support to families.  However, in several areas the PPS have seen huge cuts.  In Kent, we lost almost 50% of our service last year (while hearing rumours of increases in the tribunal staff – a really inspiring message for parents).

Cuts in a service offering SEN information, advice and support to parents, at a time when the new legislation is raising so many questions and concerns for families, is just nonsensical (and perhaps even disrespectful to the families who need this support).  How will PPS be able to ensure their services are available to ALL parents of children and young people with SEN with a reduced workforce?

In some areas, the PPS currently offer the Disagreement Resolution Service but the new COP states clearly, with regard to this service, that local authorities “should ensure that the service is impartial and it must be independent of the LA”.  Not all PPS are independent, even if , in theory, they operate at arms-length.  This is not a criticism of PPS, but a criticism of LA officers who just cannot understand that in order for a PPS to be truly effective and deliver the service that families need, they need to let go!  However, this  comes down to Politics and Personalities instead of achieving the outcomes for children, young people and their families

2.4 Parent Carer Forums:

“Local authorities and other service providers should work in partnership with parent carer forums”.  This is where “should” and not “must” comes in to play.  The COP says effective parent participation happens when the engagement of parent-carers is valued, planned and resourced – but doesn’t clarify how this should happen.   It states in 2.4 that PCFs should be involved in the preparation and review of the Local Offer but in section 4. The Local Offer, there is no mention of the forums, nor are they mentioned in the regulations regarding the local offer.   There is the “must involve parents, children and young people” line, but this will allow the LA to cherry-pick the parents who they know and trust not to challenge them and that won’t help some families.

5.1 Improving outcomes for all

“All children and young people SHOULD have an appropriate education” not MUST have.  “All education settings SHOULD have high aspirations for all children and young people” not MUST have.  It would be nice to see the bar raised slightly here.  However, I fear this will not be the case when you see in 5.8 Best Endeavours that educational settings must use “their best endeavours” to make the special educational provision called for”.

“Using their ‘best endeavours’ means that within the resources available to them these bodies must do their best to meet a child or young person’s SEN”

Seriously?  We went from “Support and aspiration: ……. wide-ranging proposals to respond to the frustrations of children and young people, their families and the professionals who work with them” to “do their best”?  Hardly aspirational when one of the main frustrations of children, young people and their families is educational settings not making the special educational provision they or their children need.

5.9 CAMHS

“Some children and young people identified as as having SEN may benefit from referral to special CAMHS for the assessment and treatment of their mental health problems”.  Now this is truly aspirational.  Does the DfE know about the wait lists?  Do they know how many children and young people are turned away as “not meeting the criteria” or because they are assessed as “too severe”?  What about those families?

SNJ7-9The good bits?

The timescales proposed (20 weeks from request of assessment to EHC Plan being provided) are better than the current 26 weeks, as is  the clarity that if a particular service is assessed as being needed (eg from a statutory social care assessment), the provision should be delivered in line with the relevant statutory guidance and should not be delayed until the EHC Plan is complete.

The statement that “the assessment and planning process should be as streamlined as possible” along with “there should be a “tell us once” approach to sharing information” – if any LA can cut down on the number of times a family has to re-tell their story, that will be such a welcome change for families.

“EHC plans should be focused on outcomes (both short term and longer term aspirations)”.  An outcome is not the delivery of support or a service, it is what that support or service is trying to help the child or young person achieve.  So your EHC plan shouldn’t say that as an outcome you will receive Speech and Language Therapy, it should specify what that Speech and Language Therapy should help your child to achieve.

Speech and Language Therapy should be recorded as educational provision unless there are exceptional reasons for not doing so.

There was one thing that stood out for me, as a Lead Trainer for Early Support and that is the omission of the key worker role within the CoP.  Key working is mentioned but only four times and each of those is a reference to something LAs may want to consider.  Having been involved so closely with the Key Working training, it feels very disheartening.  The whole ethos of key working and working in partnership is the very thing that LAs, PCTs and parents need to be using as we move forward.  Having everyone concerned aware of what it means and more importantly, what is looks like in practice is essential to the success of the Children and Families Bill.

Legislation on policies and procedures is about the delivery of the Bill, not an outcome of what the Bill is hoping to achieve.  Let’s hope the final COP is more outcome-focussed.

hands-001As this article is published, Tania & I will be travelling up to meet Mr T.  If anyone thinks that is a daunting thought, then let me also share that I am waving K off  on his first ever school trip away just before I head for the train and that is a much more daunting proposition – as any mum will tell you.

So,  if you’re on the train to Waterloo from Kent on Monday morning, I will be the woman desperately trying to disguise my red-rimmed eyes, probably muttering “he’ll be fine, he’ll have fun” under my breath.

Children and Families Bill – the missing pieces

senreform2Earlier this month, we shared our Initial Views on the Children and Families Bill.  Since then, we have had chance to look at the Bill in more detail and wanted to share our views and more importantly to discuss “the missing pieces”.

As parents, we know the current system and its failings far too well so we welcomed the introduction of the Green Paper and the excitement of being involved in Pathfinders.  However, the Bill that we have been offered isn’t quite all that we were hoping for.

The reforms offered, “a new approach to special educational needs and disability that makes wide-ranging proposals to respond to the frustrations of children and young people, their families and the professionals who work with them”  and a vision of reforms to, ” improve outcomes for children and young people who are disabled or have SEN, minimise the adversarial nature of the system for families and maximise value for money”.

What we’ve been given in the Children and Families Bill has not quite lived up to the hype.

The good bits:

  • Children, young people and their families are to be true participants in all decisions affecting them
  • A duty for health, social care and education to commission jointly (which theoretically means they will actually speak to each other)
  • Education Health and Care Plans (EHCP) to be available up to the age of 25
  • Academies and Free Schools to have the same SEN requirements as maintained schools
  • Independent Special Schools will be included on the list of schools that parents can request as a placement (although the proviso about ‘efficient use of resources’ is still in there)

What’s missing?

  • Disabled children and young people without SEN.  Despite the Green Paper offering improved outcomes for children and young people who are disabled or have SEN, the Children and Families Bill is only offering the new EHCPs to those with SEN.  This decision shows a real lack of understanding from the DfE about the difficulties that children and young people with “just” a disability (and no SEN) face.  The Children and Families Bill suggests that the needs of these group will be met by the Local Offer.
  • Local Offer – Minimum Standards.  Currently, the DfE are suggesting a “common framework” for the Local Offer.  This could possibly (and will most probably) result in a postcode lottery.  As the Local Offer is being offered as the alternative to EHCPs, there needs to be much clearer legal obligation of minimum standards for Local Authorities.  “Minimum” indicates that something is the very least which could or should happen. “Framework” indicates a skeletal structure designed to support something.
  • There does not appear to be, within the Bill, a “duty to provide” the contents of the Local Offer, just to publish it and that a local authority “may” wish to review it “from time to time”. All a little bit wooly.
  • School Action/School Action +.  There is no mention within the Bill as to how the needs of children currently on SA/SA+ will be met.  Again, if the Local Offer is to be the alternative then this  needs to be much more prescriptive to Local Authorities. The DfE says the replacement structure for the present lower categories of SEN will be defined in the new Code of Practice which is now starting to be drawn up – interestingly by a different team of officials to the one that drafted the bill. Hmmm.
  • No duty on health or social care to provide the services within the EHCP – just an obligation to jointly commission with the local authority. There needs to be an realisation in government that the words “Joint Commissioning” aren’t a new magic spell – a sort of Abracadabra for SEN. Optimistically repeating the “Joint Commissioning” mantra doesn’t mean it’s, as if by magic, just going to happen.
  • No specified time frames from when you apply for an EHCP assessment to when you receive an assessment and more importantly, a EHCP.  Currently, it takes 26 weeks from applying for an Assessment of SEN to actually receiving a Statement of SEN.  This, as a parent, can seem like a lifetime (especially if you only hear about the need for a statement a short time before your child attends school – and yes, this is more common than people like to admit). However, you can see a light at the end of the tunnel with a deadline of 26 weeks.  The new Bill does not provide any defined time scales and this is essential for families. It does say that the regulations may make provision for this – but “may” should really be replaced with “must” as this is a key point.
  • Key worker – throughout the Green Paper, there was mention of a key worker for families.  One person to go to, who would help the families through the jungle but there is no mention of this within the Bill.  This is one of those key features that really excited a lot of families.  The ability to have one person; one person who would repeat your story for you and point you in the right direction to access the support your family needs. This is one aspect of the initial aspirational Green Paper that needs to be clarified – both for families and practitioners. Was this just an absent-minded omission from the Bill or has the DfE decided to quietly sweep this innovative and important role under the carpet? Note to DfE: if it’s the former, someone needs a slapped wrist, if it’s the latter, you’ve been rumbled so put it back in, pronto. Or is this another point for the “regulations”?
  • Time – the current Bill is scheduled for Royal Assent in Spring 2014 (i.e. passed into law) with September 2014 being proposed for when this will come into practice.  How will Local Authorities and PCTs manage to train all the necessary staff in this short time (especially with a 6/7 week school holiday in that time)? Ask any parent and they will say the same: they would far rather wait for another six months so that LAs can get all their recruiting and training in place (not to mention their funding arrangements) than inherit a chaotic mess where no one knows what’s going on, where the money is coming from and half the staff still hanging on to the old adversarial ethos.

While we’re on the subject of culture change, a DfE official did mention to us that he thought re-training to effect culture change should be starting now. I would be really interested to know what funding or provisions or courses there are in existence or planned, to begin this process – which is arguably one of the most important parts of the entire process. Indeed, it might be a little controversial to suggest, but if a root and branch programme of culture change within LA SEN departments had been put into practice to start with, there may have been less need to overhaul the entire system.

The new Children and Families Bill does have the potential to provide children and families with, “A new approach to special educational needs and disability” and to, ” improve outcomes for children and young people who are disabled or have SEN, minimise the adversarial nature of the system for families and maximise value for money” but not without some more thought and considerable tweaking.

Tania & Debs

Draft SEN legislation published and a response to my open letter to Sarah Teather

Well today is the day – the draft legislation has, rather unexpectedly, been published for the reform of provision for children and young people with Special Educational Needs. It had been said to have been put off until October, but that hasn’t appeared to have happened.

Towards the end of last week, I was delighted to receive a response to my Open Letter to Sarah Teather, from top DfE official, Stephen Kingdom. I had intended to publish it earlier but on Friday I had an EHCP meeting and then my day job, as PR for DysNet Limb Difference Network, had to take precedence with the Grunenthal “apology” to the world’s Thalidomide survivors, for which we’ve received much coverage. It’s had me working over the weekend since Friday evening.

Anyway, first the response to the open letter, then onto the draft legislation:

Thank you for your open letter of 27 June to Sarah Teather MP, Minister of State for Children and Families, regarding the pace of reform to special educational needs and disability policy.  I have been asked to reply and I am sorry for the delay in doing so.

It was very good to meet you at the Surrey pathfinder event in July, and to hear your personal perspective on the pathfinder programme and the Government’s proposals for reform of the SEN system.  Since we met, I have become an avid reader of Special Needs Jungle.  I hope you also found the opportunity to correspond directly with Sarah Teather through the Mumsnet chat helpful.  We hope she will have the opportunity to do a follow up webchat shortly, as well as continuing to talk to parents and young people through other channels.

I know you are concerned about the pace of reform and whether the Government is allowing sufficient time to learn from the pathfinders. We do understand those concerns – which I know others share – and that is why we are ensuring we can continue to feed in learning from the pathfinders throughout the legislative process.  And, of course, the legislation is only one part of the reform story – as you know well it is getting cultural change that is key.

The SEN clauses in the Children and Families Bill, which we intend to publish in September, will be draft – that is, they are intended for discussion.  As the Minister said on MumsNet, we hope that this discussion will be a real opportunity for wide range of stakeholders, including parents and charities, to tell the Government what they think.  The final Bill won’t be published until spring 2013, and it will be debated at length in Parliament before it gets Royal Assent and becomes an Act.

The Minister also said on MumsNet that some of the legislation will need to be done at a later stage.  In Parliamentary terms, this is referred to as “secondary legislation” and is usually in the form of a statutory instrument, such as a regulation.  We will, of course, be able to build in further learning from the pathfinders into this secondary legislation.  In addition, we will in due course be updating the SEN Code of Practice, which provides practical advice to local authorities, maintained schools, early education settings and others on carrying out their statutory duties.  I open this will present another opportunity to build in learning from the pathfinders.

Ministers do genuinely want the SEN clauses to be informed by views, knowledge and experience of people like yourself.  That is critical for us to get the detail right.  I hope, however, that you can appreciate Ministers also want to maintain pace, to ensure that the reforms set out in the SEND Green Paper really do bring change for children and their families who have special educational needs or disabilities.  During the development of the Green Paper in 2010 and since, my team has heard from lots of parents about the frustrations they experience with the current system (and, of course, you are all too aware of these as well).

I hope this response is helpful, and thank you once again for taking the time to write.

It’s very nice to see that SNJ is read in high places and so if you feel there is any issue surrounding SEN that I haven’t covered that should be highlighted, do let me know.

I was very interested to see cultural change mentioned – having had two recent experiences of parents in my area who have received shoddy treatment at the hands of SEN panels. It is quite disturbing to see that even while we are working to improve things with the reforms, staff at lower levels in the LA feel it is acceptable to keep on as if it was the bad old days.

The draft legislation, published earlier today, will require some digestion. You can download it for yourself here. It’s going to take some reading, at 65 pages, so I’m not going to comment too much today other than to highlight the following regarding assessment:

The local authority must secure an EHC needs assessment for the child or young person if, after having regard to any views expressed and evidence submitted, the authority is of the opinion that.

(a) the child or young person has or may have special educational needs, and

(b) it may be necessary for special educational provision to be made for the child or young person in accordance with an EHC plan.

Now, I can already see a problem – first of all, no one would ask for an assessment if the child clearly didn’t have SEN, or if earlier attempts to help the child had not already taken place so it’s a bit of a moot point. But the rub is in b). As it stands, so far, the proposals are that when an agency (parent, school, nursery, health visitor etc) refers a child for an assessment, a multi-agency meeting is supposed to take place where it is decided if anything needs to be done at that stage, or if the child’s needs can be met from the local offer (what’s available locally) or if an EHCP assessment is needed.

So who is going to make this crucial decision about whether to assess? Unless there is clear and complete cultural revolution within LEA mid and lower level staff, nothing will change and in order for parents to have confidence in the new system, this decision-making process will need to be totally transparent. At the moment, you get a yes or a no and maybe one line about why (if you’re lucky), but a parent has no idea what went on in the panel discussion. Having the proposed key worker involved to represent the child at that meeting would go some way to making sure that all documents are present and that the best decision for the child and not just the LA, is being made.

One further, and quite startling point, for now – the draft bill states that when an EHCP is to be drawn up the parents can ask for a place in an independent special school (non maintained special school). This is a huge step forward, if I’m reading it right. There is, of course, a get-out clause – the old “efficient use of resources” line that’s currently in the current system and so this really needs a closer look, because how can you give parents a right to name an independent special school if the LA then comes back and says, well we don’t want to pay for that because we don’t think it’s an efficient use of resources?

There is much to be digested this evening but at first scan, there’s also much room for improvement. Expect more on this in the next few days.

Sarah Teather is doing a live webchat over on MumsNet tomorrow at 1pm.

TGIF: And a chance to see the week’s special needs news & views

Tania TirraoroThis week we’ve had sunshine, showers, hail as big as marbles and thunder and lightning… it must be April. I’ve whipped up some special needs stories and blogs that might have slipped your notice as you get over all that Easter chocolate.

As you read this over the weekend, I’ll be at a spa hotel with my husband, enjoying our carer’s break, leaving the boys and the dog in the capable hands of my mother-in-law. Have been instructed to leave my iPad behind and relax… if you spot me online before Monday, please tell me to log off immediately.

Government Urged To Ensure SEN Appeal System Is Made Less Intimidating

Many families experience an intimidating process when they appeal against local authority decisions regarding special educational needs provision for vulnerable children, says speech and language therapist Janet O’Keefe, who attends many tribunals as an expert witness.

Janet says that special educational needs and disability tribunals are organised by the Ministry of Justice as part of the court system and their hearings are often heard in magistrates’ courts, asylum and immigration buildings, or social security offices which is very stressful for parents who have not done anything wrong other than disagree with the provision proposed to support their child by the local authority responsible for meeting their special educational needs.

This issue will be one of the topics under discussion at a conference called Towards a Positive Future, which Janet is holding in Newbury, Berkshire on Saturday, 16 June, where speakers will include Jane Asher, president of the National Autistic Society.

Janet, who founded Wordswell (Speech and Language Therapy Services) near Ely, Cambridgeshire, says the event is aimed at parents of children with special education needs and the professionals who support them. Janet will be speaking about the daunting and intimidating process of appeal for parents.

Janet says: “It’s disappointing that local authorities do not seem to be currently negotiating with parents, which results in more appeal hearings and higher legal costs for those parents who use expensive specialist solicitors and barristers to represent them. On average I have attended two tribunal hearings a month as an expert witness for speech and language therapy; in January 2012, there were 12 in the diary and I attended eight.

“Since all tribunals came under the Ministry of Justice, hearings have had to be held in government buildings instead of hotels or dedicated tribunal buildings to save money.  This means that instead of a formal business meeting, special education appeal hearings are now held in magistrates’ courts, asylum and immigration buildings, or social security offices.  Often there is security on the door like an airport to scan and search all bags and people entering the building. The whole process is increasingly stressful – and all because parents dared to disagree with the provision the local authorities are offering to support their child who through no fault of their own has special educational needs.

“The legal costs have also escalated for parents who seek legal representation. Just five years ago parents were telling me that their legal bill was on average £7,000, now they are telling me it is more than £20,000.”

Tania Tirraoro, a mother of two autistic sons, Luca, 14, and Giorgio, 12, and author of Special Educational Needs – Getting Started with Statements, believes a much more conciliatory approach is required which would involve a huge culture shift away from the present process so the focus is on the special educational needs of the child, and not the local authority’s budget.

Tania belongs to Family Voice Surrey, a parent carer group to help form the new SEN structure where pathfinder trials are taking place.

She says: “The system has been adversarial for far too long, and it’s not just the framework that needs to change to improve things, but the attitudes of some LEA staff to dealing with stressed and vulnerable parents. Even as the trials are getting underway, parents using the existing system are still being subjected to unnecessary expense preparing for tribunals that the LEA backs out of at the last minute, inadequate proposed statements and fights over placements. A change here would make the biggest difference of all.

“There are many fine ideals in the green paper, but the most important thing is that the pathfinder trials must show that they are workable on a large scale and do, in fact, improve the lives of children with SEN and their families.”

Jane Asher, president of the National Autistic Society, says: “I am very much looking forward to coming to Wordswell’s conference – anything that can help to promote understanding, support and the need for the right education for those on the autistic spectrum is always close to my heart.

“After over 30 years of working with the National Autistic Society I still continue to learn more about this complex condition all the time, and I know I will enjoy meeting the parents, carers, professionals and those with autism themselves who will gather to exchange experiences and to help improve the lives of all those affected. “

Janet has edited a book which was launched at last October’s Conference called ‘Towards a Positive Future: stories, ideas and inspiration from children with special educational needs, their families and professionals’ which includes practical information and support for parents and expert witnesses.

The conference is being held at the Arlington Arts Centre in Newbury on Saturday, 16 June. Early bird tickets cost £80, and £100 after 1 May, and can be booked by calling 01954 253525, or email janetokeefe@wordswell.co.uk 

Please see www.wordswell.co.uk for further information.

Ends.

Notes to editors:

  1. For photos or interview requests, please contact media officer Ellee Seymour on 01353 648564, 07939 811961, or email ellee.seymour@btopenworld.com
  2. Full details of the green paper for special educational needs, please see the Department for Education, http://www.education.gov.uk/childrenandyoungpeople/sen/a0075339/sengreenpaper

I want your statementing stories

I get emails from lots of people with questions about statementing and I do my best to answer them within the best of my knowledge or signpost them to someone who can. I also read lots of stories on message boards from people going through the process who are looking for information or other people’s experiences and so I’ve had an idea.

If you’ve been through the statementing journey with one or more of your children, I’d like to hear from you. Sharing stories can help other people on the same journey and helping people by raising awareness is what this blog is all about. If you’d like to share your story with others via the Special Needs Jungle blog, please email it to me (Tania) at info@specialneedsjungle.com. If you’d like more information before committing, drop me a line. Also, if you have any burning ideas for topics you’d like to see covered, send them in.

Post are usually less than a thousand words and I’d love to include a photo if you wish and/or, if you have your own blog, a link to it. If you’d prefer to remain anonymous, you can change the key names in the story.

I may need to edit for length or legal reasons (we don’t want to libel anyone – even though they may well deserve to be named and shamed!)

Over the next few months, I’ll be writing more about the new SEN process as it develops – there will be more news from central government soon, maybe in the next week or so. Make sure you subscribe by email to the blog so you don’t miss any updates!

Thanks!

Tania

A new SEN Advice service from Contact-a-Family

Contact  a Family, the national charity that helps support parents with disabled children has launched a new SEN National Advice Service.

This service will help families whose child may have special educational needs – we will be able to provide advice and information on any aspect of their child’s education. Help is available through their helpline 0808 808 3555, or post a query on Facebook or Twitter and a SEN adviser will get back to you. Alternatively drop us an email: helpline@cafamily.org.uk.

The service is available for anyone who thinks their child may have special educational needs – whether or not they have a disability or has already been identified as having SEN.

The Contact A Family Service can advise on:

The SEN process – including:

  • Early years
  • School Action and School Action Plus
  • Individual Education Plans (IEP’s)
  • Statutory Assessment/ Statements
  • Annual Reviews
  • Transition planning and education after 16
  • Appeals

Other general education issues as they affect children with SEN, which include:

  • Transport to school
  • Bullying
  • Exclusion
  • Medical needs in school
  • Attendance at school
  • Home Education

You can find out more about the service and Contact A Family in general here: http://www.cafamily.org.uk/families/SEN.html

Questions please for my stint at TheSchoolRun

TheSchoolRun website is packed to the gills with great ideas to help your child’s learning. It’s bright, colourful and is a fantastic resource. The site aims to demystify school for parents, giving you all the tools you need to understand what and how your child is learning at primary school. Their informative articles, packed with advice from experts and practical tips from teachers, help parents get to grips with new educational techniques and feel confident about supporting their kids’ schoolwork.

And the week starting 16th January, they’ve kindle invited me to host a Question & Answer board about Special Educational Needs statementing. I’m not a legal expert so I won’t be dishing out legal help but I will certainly be able to offer some great signposting and answer lots of your statementing queries. The board has already begun registering questions that I will be answering as best I can from next week.

To take part, head over to this part of the site. It’s a members site so you’ll need to register if you haven’t already – and if you’re new, a huge amount of great resources awaits you from the site as a whole. Even if you don’t have a specific question, you may find someone has asked a question you’d like to know the answer to.

My article in SEN Magazine: Can teachers recognise SEN in bright pupils?

I have an article in the current issue of SEN Magazine, entitled Can teachers recognise SEN in bright pupils.

Me & my boys circa 2003

Both my sons, Giorgio aged 12 and Luca, 13, have Asperger’s syndrome, and both are extremely intelligent. Luca, however, struggled with understanding the norms of behaviour, was prone to emotional or physical outbursts and was virtually friendless. He needed to be first in everything and this constant rushing affected the quality of his work. Giorgio, a gentle soul, could read at three, but still struggles to write legibly. Group work was impossible and his original way of thinking made it hard for him to follow instructions. One teacher remarked that, “He has informed opinions which he expresses well but they are often tenuously linked to the subject matter.”
Before they were diagnosed, their infant school tried behavioural charts for Luca, and eventually, after I insisted, a literacy software programme for Giorgio. However, when you don’t know why a child is experiencing problems in the first place, it’s difficult to put the right help in place….

To read the rest of the article, click here (SEN Magazine website)

My new book for parents looking for SEN help – launched Monday 10th October 2011

On Monday, I officially launch my new book aimed at helping parents of special needs children get the education they need. It’s first coming out in ebook format, followed by a paperback in a month.

The book’s called Special Educational Needs – Getting Started with Statements. It’s a parent-to-parent guide to starting to compile a statutory assessment application for you special needs child.
It’s tough enough having a child who has special educational needs – getting them the right help can seem like an impossible task. This book sets out in a simple, easy to follow way, a step-by-step guide to how to prepare the best application you can. While aimed at the UK Education system, parents everywhere will find it useful if they are trying to organise a case for their child.

I’ll write more about it on Monday, together with links to where you can buy it. In the meantime, it would be brilliant if you would pop over to the facebook launch page and say hello!

The event page is here: http://www.facebook.com/event.php?eid=297761316917633

Many autism cases ‘undiagnosed’ – BBC News

A significant number of children with autism and related disorders could be undiagnosed, a study has suggested.  (Reports BBC News Online)

A Cambridge University team looked at existing diagnoses – and carried out recognised tests to assess other children. Of the 20,000 studied, 1% had an autistic spectrum disorder, 12 times higher than the rate 30 years ago. Autism experts said it was crucial to have accurate data on how many children were affected by the disorder.

The research, published in the British Journal of Psychiatry, was carried out in three parts. The scientists first looked at cases of autism and Asperger syndrome among 8,824 children on the Special Educational Needs registers in 79 schools in East Anglia. A total of 83 cases were reported, giving a prevalence of 94 in 10,000, or 1 in 106 children. The team then sent a diagnosis survey to parents of 11,700 children in the area. From 3,373 completed surveys, 41 cases of autism-spectrum conditions were reported, corresponding to prevalence of 1 in 101.  This 1% rate confirms estimates from previous research.

They then sent the Childhood Autism Screening Test (CAST) to the same parents to help identify any undiagnosed cases of autism-spectrum conditions. All those with high scores, plus some who had medium and low scores, were called in for further assessment. The team found an additional 11 children who met the criteria for an autism spectrum condition, but had not yet been diagnosed.

The researchers say that, if these findings were extrapolated to the wider population, for every three known cases of autism spectrum, there may be a further two cases that are undiagnosed.

Professor Baron-Cohen said: “In terms of providing services, if we want to be prepared for the maximum numbers that might come through, these undiagnosed cases might be significant. “It is important to conduct epidemiological studies of autism spectrum conditions so that the relevant services, including education, health and social services, can plan adequate provision for all those children and adults who may need support.”

Mark Lever, National Autistic Society chief executive, said: “This is important research, which for the first time gives us an estimate of the number of people who don’t have an autism diagnosis but may be in need of support.

“Getting the right support at the right time is vitally important and access to appropriate diagnostic services is crucial.”

He said the NAS was campaigning for statutory guidance for diagnosis included as part of the proposed Autism Bill to try and improve improvement in local authority and NHS services.

Source: BBC News

Well said, Mr Bercow!

I’ve just read in full the House of Commons debate on the second reading of the Special Educational Needs and Disability (Support) bill last Friday. I must highlight one particular section of the bill, introduced by John Bercow MP:

John Bercow: “Hon. Members have referred to the phenomenon of children suffering from autism. We know that children on the autistic spectrum vary greatly, but they all tend to suffer from what is commonly known in the trade as the triad of impairments—lack of social imagination, social interaction and social communication. It is important that we train staff so that we do not continue to experience the problem whereby innocently enough, but very damagingly, professionals in the education sector mistake a disabled child for a disobedient child. When we talk about people on the autistic spectrum being more likely to be excluded from school, let us be clear: that is what is taking place in so many cases. The professionals do not understand that the child is not in any sense a conventionally badly behaved child.

The understanding even of autism, which is a relatively high-profile condition, is too limited. We have to try to stimulate awareness. I was with my young son in a park in central London only a week or two ago. My son has phobias about a number of things, as children often do, and perhaps autistic children do in particular. He is anxious about hand dryers. I have always explained that they cannot do him any harm and are not dangerous, but he hates the sound that they make. When we went to take him to the loo, I said to the park-keeper, who quite properly, has to turn the key and open the loo, “Would it be okay if my son went into the disabled loo?” because I happened to know that it had no hand dryer whereas in the ordinary loo there was one. She looked completely uncomprehendingly at me and at him—I make no personal gibe at her; I am simply making a wider point—and I repeated the question. She said, “But he’s not disabled.” Again, I put it to colleagues that there is an issue of understanding. People often think that to be disabled, someone has to sit in a wheelchair, lack a limb or have a demonstrable and immediately apparent impairment, such as blindness, but children with problems on the autistic spectrum or with speech, language and communication impairments—there is often a close link between the two—can, in some cases, be disabled.”

From one parent of an ASD child to another, well said, Mr Bercow!

Read the whole debate here: Read the minutes from the second reading here

Source: Hansard,

Mother Needs Help For Self-Harming Son

I have just been contacted through this site by Sharon, a mother from Kent, whose son has been excluded from school following incidents of self-harming.

She writes, “My ADHD, ASD, Dyslexic, self-harming son, has just been excluded from school, because they don’t think Luke trying to strangle himself in class or him regularly saying he wants to kill himself, is a good role model for the other pupils. Their answer, discriminate (against) Luke for his disability. He needs support, not rejection and that’s all this exclusion is to him, rejection!”

This is apparently the second time Luke’s school has excluded him. His mother, Sharon, believes it is not Luke’s fault but it is because the staff in his mainstream school are not trained to deal with ADHD or Autistic Spectrum children.

Sharon is at her wits end. She says, among other self-harming incidents, her son has also tried to hang himself in the school’s P.E. cupboard. I have recommended that she contact SOS!SEN. Luke has been refused a Statutory Assessment Kent LEA and his parents have appealed to the SENDIST tribunal, which will be heard later this year.

Sharon says, “It looks like Luke will not have a secondary school to go to this year. The tribunal is only for a Statutory Assessment, then we need to go through the whole process yet again for a statement! We have already been to CAMHS for over a year now. No counselling, he was put on a waiting list for a ASD assessment, but there was a 13 month waiting list for that. The last time we went to CAMHS a new Dr. saw Luke and we now have a diagnosis of ADHD & ASD tendencies. Were awaiting a dyslexia test, and counselling for the self harming, which is quite evident to everyone, but they chose to ignore it, or put it down to bad parenting!”

Sharon says that Luke’s primary school failed to get him the help he needed and his problems are now worse as a result. I don’t know all the details of Luke’s case but it certainly seems to be an impossible situation to be in. However, it isn’t sadly, unique. Why is it that children in severe need of help with psychological problems are so often failed by those professionals around them?

I send my best wishes to Sharon and hope she manages to get the education and counselling for Luke that he deserves. If anyone reading this can offer free legal or medical advice to sharon, please contact me at info@specialneedsjungle.co.uk or make a comment below. Thank you.

Government Supports Autism Bill (UK)

The Government has, for the first time, declared its support for what could be England’s first Autism Bill. The National Autistic Society (NAS) celebrated the move as a vital development for people with autism as Care Services Minister Phil Hope committed to enshrining in law a raft of new measures, via the Autism Bill, which could drive a dramatic improvement in local authority and NHS services for people with the condition

On 13th May, MPs voted yes to the Government’s proposed blueprint and time scales to improve support and in a major development the Care Services Minister gave the forthcoming national adult autism strategy extra force by adding it to the Autism Bill. The Bill now awaits its third reading, scheduled for 19th June, and with the support of the Government is likely to pass to the House of Lords.

Mark Lever, chief executive of the NAS said; “We are absolutely delighted that the Government is prepared to take decisive action to tackle the shocking lack of help which leaves people affected by autism feeling isolated, ignored and often at breaking point. The Autism Bill has passed a major and crucial hurdle on the road to becoming law but there’s still some way to go. Autism is a serious, lifelong and disabling condition, and without the right support it can have a profound and sometimes devastating effect on individuals and families, so we will keep working with the Government to ensure the Autism Bill can deliver where it is really needed.”

The Autism Bill is being championed through Parliament as a Private Member’s Bill led by Conservative MP Cheryl Gillan and was drafted by the NAS on behalf of a coalition of 15 other autism charities. She said; “I commend the Government on their commitment to transforming the lives of children and adults with autism via the support of Schools and Learners Minister, Sarah McCarthy-Fry and Care Services Minister, Phil Hope. Today is a real turning point for the thousands of people affected by autism who have been unable to get the help they desperately need and I look forward to working with the Government to make this vitally important Bill a reality.”

The Government’s measures come as our I Exist campaign found that at least 1 in 3 adults with autism are experiencing serious mental health difficulties due to a lack of help. Under the Autism Bill, the national adult autism strategy, due at the end of this year, will hold local authorities and NHS services legally responsible for providing support for adults with the condition and ensure they have clear routes to diagnosis, assessment and support. The NAS is urging as many people affected by autism as possible to take part in the consultation for the strategy which closes on the 15th September.

This boost for adults with autism builds on a previous commitment by Sarah McCarthy-Fry MP to fulfil the Autism Bill’s original demands for better support for children via new regulations for Children and Young Peoples Plans. In an important win for the wider disabled community, these would legally require local authorities to collate and share data and information on children with disabilities with other agencies, which could see a huge sea change in disabled children’s services and ensure they get the support they need to fulfil their potential in adulthood.

Source: National Autistic Society

Read more on this subject

Great News – A Statement!

Got the news we had been waiting for today – Son1 has got the Statement of Special Educational Needs we had applied for. Don’t have all the details yet and we still have to sort out placement (which if I have anything to do with it will be his current school).

This time last year the head of our school’s Learning Support department told me I should apply for a statement for Son1. I thought she was mad, because he is achieving well although his educational profile is uneven and his progress is affected by his social and communication difficulties caused by his Asperger Syndrome. Still, I thought, she wouldn’t say it if she didn’t mean it. We had been through the process before withour younger son and he is now funded at their independent special school by the Local Education Authority and I didn’t relish another trip down the same road. Still, I reminded myself, it’s not for you, it’s for my boy, took a deep breath and plunged in.

I started out by applying for an assessment, which was initially turned down (see earlier post). After they reversed the decision and carried out an assessment, it went to the area special needs panel yesterday and the news came through that he had been given a statement.

It does beg the question, why was he refused an assessment and then is given a statement and I think this is largely down to the ‘new broom’ approach at the local LEA.

I now have to convince them that paying for him to attend his current independent specialist school is the right thing to do, so no time to waste! It does show however, that if you do your research, persevere (like I said, I started this path a year ago) and you are sure of your case, then you can come out with the result you believe your child should have.

It may take longer than a year for some, depending on whether you need to appeal, but I was originally told neither of my sons would get a statement and now they have one each. I used the methods I have described on this website (see links at the top of the page) both times. So, anyone reading this who is onthe same road, take heart and don’t give up!

See the outcome here

New SENDIST rules

At the same PWP workshop, Simon Oliver, Deputy President of Care Standards Tribunal and judicial lead for SENDIST management team gave a presentation about the new SEND rules. He wanted to set minds at rest about the changes, particularly to the notion that all evidence had to be in by the two-month deadline. He said as long as you appealed by the deadline and told them when the evidence would be available, that was okay.

He also spoke about Case Management – the process intended to provide clarity at an early stage about what needs to be done and by whom, to ensure the Tribunal has all the information required. These include telephone hearings where it might be possible for the sides to be heard by the judge over the phone and the matter to be resolved before a Tribunal hearing.

Among many others, he made the following points:

  • At Tribunal, parents must set out in as much details as possible what it is they want from the LEA and for their child.
  • Appellants should note the new 5pm deadline for appeals, rather than one minute to midnight as previously.
  • The Tribunal is not bound by LEA policies, but by the law governing SEN education.
  • The views of the child concerned will be taken into account
  • Trainees would now be allowed to be observers, as long as permission is sought.

Simon Oliver said that he firmly believed the new rules meant that fewer cases should actually end up at Tribunal and fewer cases would have to be adjourned because of missing documentation. Updates on the process changes canbe found at http://www.tribunals.gov.uk/Tribunals/News/news.htm

Surrey to review SEN Assessments

I recently attended a Partnership with Parents workshop in Surrey. The subject matters were an explanation of the new SEND rules given by one of the co-chairmen,an update on the Lamb inquiry and a presentation from the new Head of Surrey SEN, Debbie Johnson, asking ‘Why do so many parents appeal against Surrey’s ‘Refusal to Assess’ decisions’.

I was particularly looking forward to the latter, as although my younger son is statemented, my eldest son had recently been refused an assessment by Surrey. Ms Johnson was a very impressive speaker and was concerned about Surrey’s position at the top of the charts for councils that have appeals registered against it. Much to the surprise of many in the room, she said that what should be happening is that if Surrey LEA was not going to defend its decision at the SEND Tribunal or thought it might give way if an appeal was launched, then it should actually not be refusing to assess in the first place. This was new! Someone with common sense! We all sat up a little straighter.

Ms Johnson said there was a lot to be done in Surrey and the feedback she was getting was that parents weren’t being listened to, the process wasn’t helpful and she was going to change that. She said the changes had to ‘unbend the system’ and make statements ‘fit for purpose’. She would be disbanding panels that took parents around in circles and stop decisions being made that were not clear for either the parents not the authority.

It also appeared from figures she presented that, that in line with the large number of refusals to assess was an equally large number of pupils in Surrey diagnosed with ASD. Could these stats be related? Could it be that a lack of expertise within county provision in the field of high-functioning Autism and Asperger’s, coupled with an increasing number of parents unwilling to go down without a fight is at the root of Surrey’s large number of appeals? As Hong Kong Phooey would say .. ‘Could be!’

Ms Johnson then described the difficulties faced by a highly intelligent child with Asperger’s in a mainstream setting. She described my son to a tee. Afterwards, I spoke individually to her and she agreed to visit my son’s case again.

And guess what? True to her word, this week I heard that the decision has been reversed, my son is now going to be assessed and I am so relieved that this part of the application is now resolved. There was also additional evidence I presented to them as part of the reconsideration and I am sure this made some difference; having been turned down I had sprung into action and prepared an fulsome appeal so I was able to send it to them to see if we could avoid the necessity of going to Tribunal and it seems this has had an effect. The lesson is, if you believe strongly in your case, DO NOT give up! Those who make the decisions are only human, just like you, errors can be made or minds can be changed if you provide a convincing enough case. But you have to put the effort in – don’t ask and you don’t get.

Back at the workshop, in spite of her ‘new broom’ presentation, Ms Johnson wasn’t let entirely off the hook – many parents had serious grievances about the LEA’s past practices, including one family who had been threatened with costs (illegally) if they went ahead with a Tribunal hearing the next day. To her credit, Ms Johnson tackled the issues head on and took the particular case mentioned extremely seriously. I might pity the hapless LEA employee who made the threat if it hadn’t been such an unethical thing to do in the first place.

I left feeling vaguely cheered, though it remains to be seen how much difference Ms Johnson’s new broom makes to the way Surrey carries out its practices. I, and parents like me, will be watching closely.

See the next post ‘The SENDIST Tribunal’ for information on that part of the workshop.

Get to Grips with the SEN Code of Practice

When you dive into the world of SEN provision, you will undoubtedly come across a document called the SEN Code of Practice. This is the government document that spells out to schools and LEAs what their duties are regarding special education.

LEAs, under the Education Act “must have regard to” the Code of Practice. For parents, this means that it’s a document that you must get to grips with if your child has special educational needs.

For example, the SEN COP says that when a decision is made about whether to make a statutory assessment there is one critical question:

“7:34 In deciding whether to make a statutory assessment, the critical question is whether there is convincing evidence that, despite the school, with the help of external specialists, taking relevant and purposeful action to meet the child’s learning difficulties, those difficulties remain or have not been remedied sufficiently and may require the LEA to determine the child’s special educational provision. LEAs will need to examine a wide range of evidence. They should consider the school’s assessment of the child’s needs,including the input of other professionals such as educational psychologists and specialist support teachers, and the action the school has taken to meet those needs. LEAs will always wish to see evidence of, and consider the factors associated with, the child’s levels of academic attainment and rate of progress. The additional evidence that authorities should seek and the questions that need to be asked may vary according to the child’s age and the nature of the learning difficulty.”

Note it does not mention that they need to be so many years behind or that if they are above a certain level then they don’t need to be assessed. It is about the child themselves and their progress, rather than where they come on certain scales or test measures. This is particularly true for children with hidden disabilities such as Asperger’s or Dyslexia, who are often very bright, but whose achievement could be significantly higher and more in line with their potential if they got the right help.

Also remember that KS1 tests are teacher assessed and may not be an accurate reflection of what your child is achieving. Teachers have been known to misguidedly inflate actual test scores for a child who has a difficulty with recording answers because they know what the child is capable of verbally. But when you come to apply for assessment, the inflated score actually counts against you because although the Year 2 teacher has made an accurate recording of the child’s natural ability, it is not an accurate reflection of their achievement.

Download the Code of Practice from the Teachernet website. And then read it and use it to help your child get the help they need. This is, I know, easy to say, because it takes time and energy to get through it and if you’re working a long day and dealing with a child with special needs you’re probably short on both those things. But the document is fairly well set out, in sub-headed chunks to help you find what is relevant to you. To help, the relevant section for Statutory Assessment is from page 80, or 87/217 on the pdf document.