Our son’s rare disease sparked a search for answers- and support

Tania writes:

I am often contacted by desperate parents searching for help with finding the special needs solutions for their children.

It’s something that Helen never imagined herself having to do. She had never had to worry about SEN support for her son Jake, until he became a teenager and his health began to deteriorate.

He has since been diagnosed with a rare disease, Kleine Levin Syndrome. From having a healthy 13 year old, Helen found herself searching for answers, support and a way through the jungle of health, social care and special needs services.

Here is her story….

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We never thought our world would be turned upside and we would suddenly be fighting for our son’s right to his education.  Our son Jake, was a healthy, happy 13 year old with predicted A grades at GCSE when he got sick.

He got sick slowly, in an unexpected way, it was so difficult to explain – but his behaviour was no longer normal.

kleineHe slept for a longer periods of time, he fell asleep in shopping centres, on woodland walks in the rain, every time we got in the car – and at the same time he lost his confidence, he did not know his address, what day it was, some days he could barely speak – yet nothing had happened to him, he had not had an accident or even a bad virus – but suddenly he was not the son we use to know. It was so much more than sleeping, but sleeping was the most obvious symptom and the easiest to talk about.

We were being told, don’t worry he is just a teenager – teenagers like to have lie-ins, sleep all day and barely grunt at you, and they can change into teenagers overnight! But teenagers still leave the house, can walk for two miles without having to sit down and sleep, teenagers can be woken and it is not like they are in a comatose state with pounding headaches and having hallucinations when awake, and although teenagers might choose to ignore you, our son just didn’t hear us some times.

We saw doctors, we saw neurologists, we visited CAMHS, we made our own private referral to London and we had the same response – it is very interesting. Who wants to be interesting? We wanted to know when our son would be back.

We noticed that despite seeing all these doctors and reading the reports about Jake’s condition, they were missing the point, they were not seeing everything we were seeing; the points we felt were key to his condition.

We wrote to our GP and our neurologist and told them in a detailed letter what they were missing – it was a hard letter to write, to describe everything our son could no longer do – but this letter struck gold, it was the best thing we ever did up to that point.

A week later we had an appointment with a paediatrician who, from our description and the tests he had had so far, suggested Jake  may have the rare neurological condition of Kleine Levin Syndrome.

We had never heard of KLS – we read up on it, Googled for information and learned that it was episodic and that the episode would end, but may repeat. Shortly after that, Jake was back, it was nearly Christmas and his last memory was the summer holiday. For a while, he was the bright young person who we had before – until it happened again.

It has happened a lot since. The episodes have been a variety of length from one to 118 days, with gaps in between episodes from 1 to 33 days – KLS affects Jake severely.

We went from 100% attendance to 30% at school and we realised that when unwell, Jake was cognitively unable to learn, he could barely write his name. Yet when he was well, he was a bright, able student who had just missed loads, with topics moving on at school so rapidly he could barely catch up.

In Year 9, we focused on just his core subjects, dropped the ones he was not continuing with and school agreed to half-days to reduce the stress, and for him to do catch-up work in the mornings. We muddled through, thinking it was all okay.

We’re in Year 10 now and KLS continues. Jake is still missing huge chunks of time and we think he is doing OK. But when his  first exams arrived,  Jake panicked because he realised he has not been taught what he needs to know to succeed and that to catch up involves him copying from books, working independently but on some days doing nothing as no one knows what work to give him because he has missed so much. We also asked the school to put in writing what would happen if he was ill for exams and missed them.

In all this time we have not been chased for school attendance as they have marked him as ill and school have looked to us for guidance – but we don’t know what the options are.

After having the exams and then having five weeks off for another episode, Jake returned to school to watch a video all day as they had no work planned and we saw “red” –  there has to be more help for him.

We discovered the Local Authority Inclusion Services, who might be able to help Jake have catch up education. They had not been told about us and could do nothing without medical records and a referral.

We sent them all his notes and they contacted school. At the same time we began researching education in more detail and although we had an IEP, we had no real support or action, so after broaching the idea with my paediatrician, she agreed that applying for Statutory Assessment might be a good idea.

We also approached local colleges to find out about his post-16 options and they had been in touch with school… and we found SPecial Needs Jungle and bought the book.

Two weeks after we got to this point, we were in shock; the Maths teacher rang us at home to ask if he can put Jake into exams early, so he has a chance to sit his GCSE’s twice, and he has had some 1:1 catch up in Maths.

His Science teachers wrote to us and invited him to attend a ‘catch up’ assessment day in the Easter holidays if he was well enough and the English team have delivered a copy of his curriculum, the books he needs and some research guides to my door at 4.45pm in the evening. We have also had our first meeting with our head teacher (we have dealt with the head of year and SEN department to this point), who is looking into offering us five hours of 1:1 support a week when Jake is well, looking at reducing his time-table further and offering us easier GCSE options.

All because suddenly we have asked for more support – we are still applying for a Statuary Assessment – we may only have four terms left, but Jake deserves the opportunity to achieve the best he can, and we know school were in the wrong, as otherwise the arrival of the Statuary Assessment notification would not have had the reaction it has had.

We have done a detailed report for the Local Authority, the form we received allowed for just a small paragraph, instead we have sent a lot of evidence of Jake’s condition and we can only hope they read it and  support us.

Kleine Levin Syndrome is hard to understand – if affects only around 1000 people world wide, most patients go undiagnosed for 7 years, and most grow out of the condition within 20 years, and go on to live a normal life, but in the mean time are robbed of their teens and twenties – have little or no qualifications and struggle to be understood…. we are hoping our case will be different.  To follow our story – then visit our parents guide to KLS – www.kleineLevinSyndrome.co.uk

Here is our video about out story:

Rough Draft SEN Code of Practice published

SEN Reform imageLate yesterday, the DfE published the “Indicative draft Code of Practice” as a “work in progress” to go with the SEN/D provisions in the Children & families bill, now going through parliament.

The DfE describe the Code of Practice thus:

The SEN Code of Practice is statutory guidance that provides practical advice on how to carry out statutory duties to identify, assess and make provision for children and young people’s SEN as set out in the Children and Families Bill (currently before Parliament).

The Code also sets out how legislation and regulations concerning children and young people with disabilities works alongside this.

The DfE says a subsequent draft for formal consultation will be produced later in 2013. After this, a final draft will undergo Parliamentary scrutiny in time for it to come into force alongside the Children and Families legislation.

This Indicative CoP is a sort of rough draft devised from early pathfinder learning and from the consultation that took place when the earlier versions of the C&F bill were published.

Additionally it published ‘Illustrative Regulations” and an “SEN Evidence Pack” pulling together the information that has informed the Bill.

It just isn’t possible to write an in-depth analysis of an 86 page document and two additional publications here in less than 24 hours. We’ll be bringing you that in the course of the next few weeks.

Debs and I will be busy reading over the weekend, as on Monday, we’ve been invited to meet the Minister, Ed Timpson. I also have a few other great ideas to mention then as well. (I bet he can hardly wait)

So far, I’ve got through more than half the Indicative CoP and so here are some initial points:

References to statutory duties 

The text uses the word MUST to refer to a statutory requirement and SHOULD to refer to guidance which is a non-statutory requirement.

It emphasises the need for a fully engaged Health system through Clinical Commissioning Groups and other health bodies.

Clinical Commissioning Groups (CCGs) and, where responsible for children and young people with SEN, the NHS Commissioning Board, will be full partners in the new arrangements for securing the provision to meet these needs.

This is obviously a great idea, but, judging from what I’m reading in the press about the difficulties CCGs are facing before they’ve even fully launched, one can’t help but feel…uneasy at best.

Parental Involvement

Parents/carers figure heavily in the document, particularly in relation to helping for develop services at a strategic level and on a family level about schools fully involving parents when it comes to how their child will be helped.

Some teachers and indeed, many parents, will find this quite difficult for many reasons and this is why culture change on both sides is vital.

The CoP document talks about Parent-Carer forums and the support and remuneration they need to be fully engaged, although it does not detail what this should be.

Schools and colleges need to ensure that they fully engage parents and young people with SEN when drawing up policies that affect them. Pupil forums should always ensure that there is representation from pupils with SEN. Schools and colleges should also take steps to ensure that parents and young people are actively supported in contributing to assessment, planning and review processes.

The knowledge and understanding that parents have about their child is key information that can help teachers and others to meet their child’s needs. Enabling parents to share their knowledge and engage in positive discussion instils confidence that their contribution is valued and acknowledged.

2.2: Person-centred planning 

A key approach that ensures that parents and carers, children and young people are actively placed at the heart of the system is person centred planning. A person centred approach to planning means that planning should start with the individual (not with services), and take account of their wishes and aspirations, and the support they need to be included and involved in their community. It aims to empower parents, children and young people so that they have more control over assessment and decision-making processes. It enables continual listening and learning, focusing on what is important to someone now and in the future, and acting on this in partnership with their family and their friends.

The integrated arrangements for commissioning services for children and young people with SEN must promote the involvement of children and young people, and their parents, carers and representatives in decisions which relate to their care, and in the development and review of a local offer of services, derived from commissioning plans which reflect the strategic participation of local young people and their families. CCGs will want to engage with Healthwatch organisations, patient representative groups, Parent-Carer forums and other local voluntary organisations and community groups to do this.

Really, will they? As far as I can see, health/patient/parent engagement is at a very nascent stage and in many areas, embryonic or not even a twinkle in the eye.

Let’s be hopeful though. If it’s mandated, they’ll have to at least make an effort. Won’t they?

3.2 Keeping provision under review 

Joint commissioning is an on-going process and local authorities and their partner CCGs must keep the arrangements under review.  Local authorities also have a duty to keep under review the special educational provision and social care provision in their areas for children and young people who have SEN .

This will be a full time job for someone. In Surrey, an SEN Quality Assurance officer has been appointed already and so presumably this will be part of the role’s remit.

Two new Health Liaison Posts?

The document talks “Designated Medical Officer for SEN”.  This person might, apparently, be an employee of an organisation such as a CCG or NHS Trust. They will have responsibility for co-ordinating the role of the health body in statutory assessment and MUST work strategically across health, social care and local government.

They must… have good relations with local commissioners who are partners in the joint arrangements for SEN, working to ensure effectiveness in co-operation, and encouraging and supporting the optimum use of flexibilities for joint working (e.g. through partnership arrangements and pooled budgets).

They must provide a means for the local authority to access expert medical advice – for example, on whether or not a child can attend school, or on medical evidence provided in support of a school application – but may also be required to provide or facilitate access to, advice or support for the health community on SEN, particularly when health services are preparing reports on children. Whilst the advice and support may be provided by a number of health and care professionals as appropriate, the designated medical officer must be an identified, qualified and registered medical practitioner, with the appropriate training and/or experience to exercise this role in relation to children and young people with SEN.

The search had better get underway in LAs and CCGs across the land if they’re to stand a hope of finding such a person and training them in the ways of the different authorities they’re supposed to work across.

Social Care Services Liaison person

Another role is a similar function within social care. Social care teams have a range of duties and responsibilities towards children and young people with SEN.

Social care departments may find it useful to designate an officer or officers to support their social care teams in undertaking these duties and to act as the central point of reference for the local authority’s SEN teams on matters related to social care.

Although ‘may find it useful’ may be taken as meaning, sweep it under the carpet, there’s no money in the pot.

Section 4: Local Offer

There is a long section on the Local Offer of services and the document underlines the point that a “Local Offer’ should not be simply a list of existing services but should be used to improve the local offering for children with SEN/D.

The accompanying Regulations document is aimed at providing a common framework for the local offer. They specify the requirements that all local authorities must meet in developing, publishing and reviewing their local offer:

  • The information to be included

  • How the local offer is to be published

  • Who is to be consulted about the local offer

  • How children and young people with SEN and parents will be involved in the preparation and review of the local offer

  • The publication of comments on the local offer and the local authority’s response

There is a lot of information on the proposed Local Offer and SNJ will talk in more details about this in another post but enough to say at this stage that a ‘common framework’ is still not a ‘minimum standard’

5.6 Additional SEN Support

The big question has been what will replace the School Action & School Action + levels of SEN that are being abolished along with the statement.

The answer is here and it’s called  Additional SEN Support

But, to me, it all seems to depend on:

  1. The strength of the school’s SENCO
  2. The training of staff.

It’s fine to say, as the document does, that all teachers should be teachers of children with special educational needs, but we all know that mainstream teachers are trained to be mainstream teachers and a HUGE programme of extra training is going to be needed if there are not structured levels such as exists at the moment.

The document talks about all the tasks that a SENCO should be carrying out, but when my boys were in mainstream, the SENCO (who was great) was also a year head, class teacher, head of PE and Deputy Head.

In my personal opinion, a SENCO should be just that. A SENCO whose sole duty it is to identify, organise, monitor and review the progress of children with an SEN. They should be listening to those children and, where appropriate, organising nurture groups to support those whose support needs may look like a SEN but may, in fact, stem from an unmet emotional or social need.

Additionally, they should be monitoring the quality of SEN provision from the school’s teachers and be liaising regularly with parents (and it does say that in this document).

It’s a full time job all by itself. And they should be part of the school’s senior management team.

Before providing a child or young person with the Additional SEN Support, a rigorous assessment of SEN should be undertaken by the institution using all available evidence/data sources, such as attainment and historical data, the child or young person’s development in comparison to their peers, information from parents and, if relevant, advice from external support services.

How will this be funded? It will be 1. “agreed locally” and be from “the delegated schools budget”, but early on in the select committees they were talking about clawing back the delegated budget. So what’s it to be?

That’s it for now, we’ll have more next week, when we’ve had time to read it in detail.

You can find the DfE main document page here

You can find the Indicative draft Code of Practice here

You can find the Illustrative Regulations draft here

Please do add your opinions in the comments below or on our SNJ LinkedIn group

Children and Families Bill – initial views

Finally, the wait is over and the Children and Families Bill, which includes the SEN reforms, has been published. Debs spent yesterday poring over it and here are her initial views:

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c&fbillimageJust after 10am yesterday, the Children and Families Bill was released and I started to plough through.  Not only did I  have to read this Bill, I  wanted to compare it to the draft Bill published last September, the Select Committee’s pre-scrutiny recommendations from just before Christmas and the numerous responses.

All of this with a child off school with a chest infection and a husband at home who wanted to chat about decorating the bathroom – oh, and no in-house lawyer on hand to help.

The first thing I looked at was whether the Bill strengthened the involvement and rights of the parent and child (or young person)?  Well, you’ll be pleased to know it has.  There is a whole new clause, right at the beginning of Part 3 of the Bill (the part that deals with SEN), which reads:

In exercising a function under this Part in the case of a child or young person, a local authority in England must have regard to the following matters in particular—

(a) the views, wishes and feelings of the child and his or her parent, or the young person;

(b) the importance of the child and his or her parent, or the young person,participating as fully as possible in decisions relating to the exercise of the function concerned;

(c) the importance of the child and his or her parent, or the young person, being provided with the information and support necessary to enable participation in those decisions;

(d) the need to support the child and his or her parent, or the young person, in order to facilitate the development of the child or young person and to help him or her achieve the best possible educational and other outcomes.

As a parent, I am reading this as “Dear  Local Authority, you have to listen to me and my child(ren), and you have to give us the information we need in order for us to have an informed view”.  Now, there are probably 1001 legal-type people shouting at this post and saying the local authority “must have regard to” is not the same as the local authority “must” and yes, I know there is a difference but I am trying to be positive.

Throughout the Bill, clauses have been added or amended to clarify that parents and young people must be involved and their views listened to.  So thank you Mr T, this is a move in the right direction.

Rights & Duties

My second question was to look at whether there was now a duty for health to provide a service.  In the last Bill, there was a lot of criticism that “joint commissioning” was not enough.  In fact the Education Select Committee believed strengthened duties on health services were critical to the success of the legislation

Well, now in the definition of “Special Education Provision” we have:

21 Special educational provision, health care provision and social care provision

(5) Health care provision or social care provision which is made wholly or mainly for the purposes of the education or training of a child or young person is to be treated as special educational provision (instead of health care provision or social care provision).

This doesn’t put a duty on health but the LA do have a duty to secure the special educational provisions.  There is no clarity however, as to which health care provisions this will actually mean and as there is still no duty on health with respect to the provisions within the EHCP, there are no guarantees.

Next, we considered if the new Bill clarified that parents can apply for a EHCP assessment and the answer is yes.

36 Assessment of education, health and care needs

(1)A request for a local authority in England to secure an EHC needs assessment for a child or young person may be made to the authority by the child’s parent, the young person or a person acting on behalf of a school or post-16 institution.

There appears to be no timescales for the LA to respond within the Bill, but we are constantly being told that the “devil will be in the detail” so this, surely, has to be announced in the draft Regulations which are currently being compiled.

So, on to the next question “is mediation still compulsory” (an oxymoron if ever I heard one)?

And the answer is no.  It’s still an option for families who wish to go down this route before Tribunal but no longer compulsory.

What about disabilities?

So, I started to relax a little now but then had a  big reality check.  One huge (or as my son was said “gi-normous”) omission from the new Bill.  Disability.  Or to be more precise, disability without a special educational need.  If your child has a disability and health and social care needs but does not have a special educational need then I’m sorry but you’re not part of the Plan.

Despite several charities protesting and high profile campaigns, it would appear that the Government will not be providing the same opportunities to some of the children who need them the most.

In the DfE’s case for change, it stated “Disabled children and children with SEN tell us that they can feel frustrated by a lack of the right help at school or from other services”.

In the Green Paper, it said “The vision for reform set out in this Green Paper includes wide ranging proposals to improve outcomes for children and young people who are disabled or have SEN” and “This Green Paper is about all the children and young people in this country who are disabled, or identified as having a special educational need

All of the proposals were clearly for disabled children AND children with SEN, not disabled children with SEN.  So, what has happened?  Every Disabled Child Matters has already commented on this and I will be supporting their campaign to give disabled children the same rights as those with SEN.  When they launched the Green Paper, the DfE set out their cart and made us an offer, they clearly said “disabled children and children with SEN”.  We all hoped  that they were really listening to our families and then they changed the rules without explanation.

If you’re interested in what other groups have to say in response to the publication, I’ve listed all I can find here, if you know of others, let us know.

Children & Families Bill published

logo_dfeThe Children and Families bill, issued in draft form last year, has just been published. Within this bill are the reforms to the way special educational needs are provisioned, including the replacement of the statement with a single Educational, Health and Care plan that will set out all of a child’s needs in one document.

The DfE said:

“Significant reforms to services for vulnerable children and radical proposals to allow parents to choose how they share up to a year’s leave to look after their new-born children have been announced.

The Children and Families Bill, published today, includes reforms to adoption, family justice, an overhaul of Special Educational Needs, reinforcing the role of the Children’s Commissioner and plans to introduce childminders agencies. It also includes the extension of the right to request flexible working to all employees.

The proposed Shared Parental Leave reforms will give parents much greater flexibility about how they ‘mix and match’ care of their child in the first year after birth. They may take the leave in turns or take it together, provided that they take no more than 52 weeks combined in total.

These changes will allow fathers to play a greater role in raising their child, help mothers to go back to work at a time that’s right for them, returning a pool of talent to the workforce. It will also create more flexible workplaces to boost the economy.

Speaking ahead of a keynote speech Children and Families Minister Edward Timpson said:

I am determined that every young person should be able to fulfil their potential regardless of their background. For this to happen we must tackle the disadvantages faced by our most vulnerable children and families. Our measures in the Children and Families Bill do just that.

In this Bill we will overhaul adoption – breaking down barriers for adopters and provide more support to children. We will reform family justice – tackling appalling delays and focussing on the needs of the child. And we will improve services for vulnerable young people – transforming the Special Educational Needs system and better protecting children’s rights.

The Bill will include provisions on the following reforms:

  • Adoption Reform: the Government wants to reform the system so that more children can benefit more quickly from being adopted into a loving home.
  • Children in care: educational achievement for children in care is not improving fast enough. The Bill will require every Council to have a ‘virtual school head’ to champion the education of children in the authority’s care, as if they all attended the same school.
  • Shared parental leave: the Government will move away from the current old-fashioned and inflexible arrangements and create a new, more equal system which allows both parents to keep a strong link to their workplace.
  • Flexible working: the Government wants to remove the cultural expectation that flexible working only has benefits for parents and carers, allowing individuals to manage their work alongside other commitments. This will improve the UK labour market by providing more diverse working patterns.
  • Family Justice: the Government wants to remove delays and ensure that the children’s best interests are at the heart of decision making.
  • Special Educational Needs: the Government is radically reforming the system so that it extends from birth to 25, giving children, young people and their parents greater control and choice in decisions and ensuring needs are properly met.
  • Childcare reform: the Government  is reforming childcare to ensure the whole system focuses on providing safe, high-quality care and early education for children. The Bill introduces childminder agencies which will enable more flexible childminding and removing bureaucracy so that it is easier for schools to offer ‘wrap-around’ care.
  • Children’s Commissioner: the Bill makes the Children’s Commissioner more effective by clarifying his or her independence from Government with a remit to ‘protect and promote children’s rights’.

We’ll be looking at the bill in detail and will bring you views and analysis during the week.

The DfE announcement can be read in full here,

To read the bill and a summary of it, go here

Key Working : Whose Job Is It Anyway?

When the SEND Green Paper was launched in March 2011, the Department for Education said they would “test the role of key workers”.

Several parents approached our parent-carer forum in Kent asking “What is a key-worker”,  “Can we choose the  key-worker  if we are involved?” and “Can a key worker be employed by the Local Authority and be truly independent?”

Confused by Key working?You're not alone...

Confused by Key working?
You’re not alone…

Eighteen months later, parents are still asking the same questions and practitioners are, understandably, asking “Is this another task for me on top of my existing, increased, workload?”

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SNJ is the new SEN site expert on NetBuddy!

NetBuddy logo strap_V1[1]I’m delighted to tell you that I’ve been asked to be the new SEN site expert for Netbuddy.

Netbuddy offers practical tips from people with first-hand experience of learning disability, autism and special needs. It’s a great resource and I’m really pleased that they’ve asked me to join their team of advisers. (more…)

Exciting news from Special Needs Jungle-bringing in a fresh perspective for 2013!

I have some exciting news for Special Needs Jungle for 2013!

In 2012, the site really took off and now covers a much wider range of issues about special needs and disabilities, thanks to the many fantastic guest posts that people have kindly contributed. I am aware that my boys are growing older and have a certain type of special need and I have been thinking about how to expand the parental perspective  for the site.

Last year, I met the most amazing woman, a fellow transplated Northerner with an incredible knowledge of SEN/D who also has three children of her own with a range of disabilities. Her name is Debs Aspland and she is also the chair of Kent PEPS parent carer forum. Her energy and dedication amaze me.

(more…)

Speech Therapy to stay within educational provision – so said the man from the DfE

One question on many lips in the reform to the special educational needs system is, with the inclusion of health in an EHCP, where will speech and language provision end up?

As it stands at the moment, the Health part of an EHCP is not going to come attached to a statutory duty to provide and so if it ends up in the health part of a plan and isn’t delivered, how will you appeal?

However, my friend and SEN barrister, Gulshanah Choudhuri, this week attended the Education Law Association’s specialist SEN group meeting and asked this very question of Phil Snell, policy advisor for the DfE. Mr Snell was giving a presentation addressed to the members of ELA, followed by a question and answer session.

Gulshanah Choudhuri

Gulshanah Choudhuri

Gulshanah asked about her own daughter, who has Down’s syndrome, and whether her speech therapy would go under the new health provision or remain under education. Mr Snell, in front of an audience of around fifty lawyers besides Gulshanah, assured her it would remain under education.

The pathfinders have now been extended until September 2014 – the same month it’s planned to introduce the changes after the bill gets Royal Assent at Easter 2014. This has raised concerns that the legislation will be introduced before the trials on the reforms are complete.

The National Deaf Children’s Society (NDCS) is calling for the bill’s introduction to be delayed, so that the pilots have more time to test the reforms. The charity is particularly concerned about how the new system will fully involve health professionals.

Quoted in Children and Young People Now, Jo Campion, deputy director of policy and campaigns at NDCS, said: “We have been looking closely at the pilots and speaking to families with deaf children. The evidence we are getting back is that professionals in health are not getting involved.

“Some parents are telling us that at the joint plan meetings health professionals are simply not showing up. If these reforms are supposed to be radical then the legislation will need to be strengthened to place a legal duty on health agencies to get involved. Currently that is not there.”

NDCS is also worried that local cuts to education provision will mean less services and staff are available to support children with SEN as the reforms progress.

Mr Campion said: “The cuts are affecting professionals who are working with families in the pilot areas who are under threat of losing their jobs. How will the government be able to test these reforms if there’s no-one left to work with families?”

Contact a Family’s head of policy Una Summerson agreed that the government should take time to consider the evidence from the pilot areas before introducing changes to the law.

“This is an enormous change to the system that needs to be tested properly so we are pleased about the extension,” she said. “But we are concerned that the legislation will be introduced early next year before the government has been able to collect the evidence.”

There are also fears that children with speech and language difficulties could miss out on specialist support under the new system.

The Royal College of Speech and Language Therapists (RCSLT) warned that the majority of children with speech, language and communication needs do not currently have a statement of SEN, and therefore may not be eligible for new single education, health and care plans.

But Christine Lenehan, director at the Council for Disabled Children, said the government is right to extend the pilot scheme due to the complexity of the reforms – despite other concerns about the changes.

“It is encouraging to see the government taking the pathfinder work seriously and giving them additional time to test out what works best in these complex areas,” she said.

Mr Timpson meanwhile said, “We want the best for children and young people who have special educational needs or who are disabled,” he said. “Our reforms will help children get support swiftly, make progress in school and then go on to live independently later in life.”

Source for the second half of this article is Children & Young People Now

When SEN Tribunal looms, seek legal advice

Many parents find themselves in the position, as they try to secure a statement for their child with special needs, of having to go to Tribunal when they cannot reach an agreement with their local authority about provision. This is, always, a very stressful situation.

It’s hoped that the new reforms that are now being discussed will prevent much of this – or at least that’s the intention. Without substantial improvements to the draft bill however, many believe it will do nothing of the sort.

It is always recommended that you do not represent yourself at Tribunal, even if you are legally qualified to do so. This is because it is very difficult to remain detached when the future of your child is being discussed when this is a situation to which  you are extremely emotionally attached.

There are several avenues you can go down. As well as IPSEA, SOS!SEN and the NAS Advocacy Service, there are various SEN Advocates, some of whom work pro bono. You may also decide to engage the services of a solicitor – there is a list on this page.

Additionally, due to the recent changes in the law, barristers can now accept instructions from parents (and local Authorities) directly. This is called Direct Access and more information is on the Bar Council website, however, it is not possible for those on legal aid, though they can still have their case in part funded. This is particularly welcome as the costs are no longer duplicated.

One such barrister is Gulshanah Choudhuri, who works throughout England. I recently met Gulshanah and was very impressed by her compassion and quiet determination with which she pursues the best solution for her clients. She has a very personal reason for working in the field of SEN law – a mother of two, she has a daughter with Downs Syndrome and so has an intimate knowledge of what it is like to live with a child with additional needs.

While working in criminal law, she found herself often asked for legal SEN advice to parents at the school gates.

Gulshanah says, “I became very interested in SEN law while I was practising as a family and criminal barrister, that I began to question why not just do SEN law? So I did and instead of giving free legal advice at the school gates I set up my own chambers www.senbarristers.co.uk and have never looked back. I always remember my parents saying good things come when you follow your passion, and they have. Not only am I helping parents to secure what is rightfully their children’s education but I am following my passion. If I could I would have done SEN law when I qualified!”

Gulshanah has worked as a pro bono legal adviser for IPSEA in the past, and has been able to help many parents get the help their child needs, offering mediation as well as representation at Tribunals.

She says, “One client I advised came to me with an appeal to the Upper Tribunal and upon having a one hour conference with him, it soon became apparent that what he needed was to urgently amend the grounds of appeal to one of Judicial Review. The Upper Tribunal have accepted and he will now be doing the hearing himself, with me supporting him. Parents can use a barrister such as myself for all sorts of issues relating to SEN, such as a school excluding children with SEN on a school trip.”

It has always seemed to me a disgrace that parents have to seek legal redress at all when we are talking about the needs of a vulnerable child, but sadly, this is all too often the case. If you find yourself in this position, have reached a stalemate with the local authority and feel you need to seek legal advice, do your research, check out the list I have compiled, which is by no means definitive.

I must stress I have no personal experience of their services, apart from having consulted Douglas Silas who gave me good advice and my personal knowledge of Gulshanah, whom I like very much, and who would be my first port of call should I ever need SEN legal help. However, the page does include some honest recommendations from parents.

The SEN bill’s future is in the hands of.. well, what a welcome surprise!

The last week has been really hectic with my boys going back to school and a huge workload, but I’ve just been prompted by a blog comment to write about just who will be responsible for SEN and the draft bill following the reshuffle.

Rather than David Laws, who took over Sarah Teather’s ministerial job, and much to the relief of many I expect, the SEN portfolio will be managed by Edward Timpson MP who is Parliamentary Under Secretary of State (children and families)

His responsibilities include: Adoption, fostering and residential care home reform; Child protection, special educational needs; family law and justice; children’s and young people’s services; school sport; CAFCASS; Office of Children’s Commissioner

I have done a little research and am quite pleased at what I have found. Mr Timpson grew up in a home where his parents fostered many children and he has two adopted brothers. He is married and has three children of his own.

Mr Timpson has sat on the Children, Schools and Families Select Committee and the Joint Committee on Human Rights. Until his ministerial appointment he was also chairman of the All Party Parliamentary Groups on Adoption & Fostering and Looked After Children & Care Leavers, vice chairman for the Runaway & Missing Children group.

So, it seems that someone with an actual interest and experience in and knowledge of vulnerable children and special needs. This is very welcome and, indeed, somewhat reassuring.

There are many who are concerned that the draft bill may not live up to expectations. It will be interesting to see what the future holds with someone who clearly cares about the issues concerned at the helm. As I have said before, I do not think that, unless you have had close experience of having or working with children like ours, and/or children that no one else seems to want, you can only sympathise, rather than empathise. Mr Timpson certainly seems to qualify as having experience.

He also has a personal interest in rare diseases, another subject close to my heart. I work for an organisation concerned with rare diseases, Son2 is about to be investigated for one and I myself have a rare eye disease, PIC, that can flare up overnight to leave me with very limited vision in one eye.

Of course, I know only as much about Mr Timpson as the above, and that he is a party loyalist. But he seems like a decent chap and has demonstrated that he is a good fit for the role, on the face of it, at least.

I look forward to hearing from Mr Timpson when he speaks about how he sees the draft bill developing. I hope he will use the experience that he has to make sure the bill is vastly improved as it goes through the stages and that he has the gumption to listen to the many, many voices, calling for a slowing of the pace.

If you haven’t seen it already, your views are being called for on the draft bill. I’ll be submitting mine as part of Family Voice Surrey parent carer forum. You have until October 11th. See this post for more information 

The SEN draft bill: Have your say – but be quick!

The draft SEN bill is now out and will undergo pre-legislative scrutiny by the Education Select Committee. The committee last week issued a call for evidence with their cut off being noon on 11 October, but considering the questions being asked, it might be difficult for full answers to be given, considering the trials are only just about to get underway. Again, things seem, to me and many others, to be being done with undue speed.

The Committee says it may be unable to accept late submissions due to “tight deadlines”. But why are deadlines tight? Who has imposed them? Can’t this time-constrained person just say, “Yeah okay, made a mistake, have another month?” Go on, I bet you could if you really tried.

SEN lawyers are poring over the draft and are already making their voices heard about potential issues they that they believe will not benefit children. They have their chance to submit feedback in the call for evidence, as does everyone who has an interest – parents included.

Several people from local authorities and charities have said to me that the draft bill leaves them underwhelmed and doesn’t go far enough, but I am sure the DfE would say that the key word is ‘draft’ and the final bill and its regulations will be informed by the outcomes from the trials. My view, that things are moving at too fast a clip, legislation wise, for that to truly happen, has not changed. Perhaps ministers or officials should sit in on some of the pathfinder meetings so they can truly see where things are up to. I’m sure they would be welcomed. In fact, they can sit next to me; I’ll save them a seat between me and Ang, my Family Voice co-chair.

Some councils seem to be ahead of others, and the danger is that the DfE will pay more attention to them, when in fact, they may have rushed into trials without the proper ground-work having been done thoroughly enough. The whole process rather reminds me of the tortoise and the hare. I, for one, would rather have a rather more sedate and considered pace. Well, when I say “I, for one” actually, everyone else I speak to involved in the trials thinks the same as I do. That’s EVERYONE. I’m really not sure why the government, who are aware of this disquiet, seem to think we’re all just moaning minnies. I’m not talking about people who don’t want the change to happen – these are people who have committed much time, energy and taxpayer money to this on all sides and truly want an end to the adversarial way that is still, as we speak, continuing.

In fact, tomorrow, I am accompanying a parent to a meeting with an Area SEN Manager regarding funding their chosen placement – and this is for a school that, albeit, independent, is well-recognised as a centre of SEN excellence, cheaper than most LA special schools and where the LA already funds many similar children. This child is only there because he wasn’t given the help he clearly needed when the family applied, twice, in previous years and were refused assessment. I’m still hoping they’ll see sense before we have to traipse over to the SEN office. In the draft bill, equal weight is being given for parents to ask for placements at non-maintained special schools as to any other placement so, hey, here’s a crazy suggestion, why not show some forward thinking and start now?

Part of this problem, I think, stems from the fact that the pathfinder information and changes in culture have not trickled down to the people doing the day-to-day work in the LA SEN departments. In our authority, this is about to be addressed and not a moment too soon.

If you would like to give your feedback to the Education Select Committee, The questions being asked are below. Don’t be put off if you don’t think you can answer every question. Just give the feedback that you are able to. I think very few people will be able to answer every question. If you are a parent or carer of SEN/disabled children, your views are just as important as anyone else’s; more so, in my opinion. If you have found the bill too impenetrable to comprehend, try reading the letter written by the former minister, Sarah Teather, to the select committee committee as this may help you understand the bill’s clauses. There is also a guide for submissions to select committees here

General

1. Does the draft Bill meet the Government’s policy objective to improve provision for disabled children and children with special educational needs?

2. Will the provisions succeed in cutting red tape and delays in giving early specialist support for children and young people with SEN and/or disabilities?

3. What will be the cost?

4. What impact will the draft Bill have on current institutional structures?

5. What transitional arrangements should be put in place in moving from the existing system?

6. What can be learned from the current pilot schemes and how can these lessons be applied to the provisions of the draft Bill?

7. Is there anything missing from the draft Bill?

Specific

8. Whether it would be appropriate to move away from “special educational needs” and use the term “learning difficulties and/or disabilities” instead in the new system?

9. How the general duties on local authorities to identify and have responsibility for children and young people in their area who have or may have special educational needs (clauses 3 and 4) work with the specific duties in other provisions (clauses 5 to 11, 16 and 17 to 24)? Are they sufficiently coherent?

10. Should the scope of the integrated provision requirement be extended to all children and young people, including those with special educational needs?

11. Should other types of schools and institutions be included in the duty on schools to admit a child with an education, health and care plan naming the school as the school to be attended by the child?

12. Do the provisions for 19 to 25 year olds provide a suitable balance between rights, protections and flexibility?

13. Do the provisions achieve the aim of integrated planning and assessment across agencies?

14. How could the power given to the Secretary of State to make regulations with regard to the practicalities of the assessment and planning process be best utilised to achieve the aim of integrated support?

15. What impact will the new powers provided for in the clauses have on young people’s transition into adult services?

16. Should the provisions in this bill relating to portability of social care support reflect those for adults contained in the Care and Support Bill?

17. How could the provisions in the bill be used to reinforce protections for young people with special educational needs who are in custody or who are leaving custody?

Please note that submissions need not address all the questions but only those areas on which you have evidence to contribute. Where your comments relate to specific draft clauses, please identify the relevant clause clearly in your submission.

Please note: The submission should be sent by e-mail to educom@parliament.uk and marked “Pre-Legislative Scrutiny: SEN”. The Committee’s strong preference is for submissions in electronic form, although hard copy originals will be accepted. Hard copy submissions should be sent to Caroline McElwee, Committee Assistant, at: Education Committee, House of Commons, 7 Millbank, London SW1P 3JA

Each submission should: be no more than 3,000 words in length; have numbered paragraphs; and (if in electronic form) be in Word format or a rich text format with as little use of colour or logos as possible.

For Data Protection purposes, it would be helpful if individuals submitting written evidence send their contact details separately in a covering letter. You should be aware that there may be circumstances in which the House of Commons will be required to communicate information to third parties on request, in order to comply with its obligations under the Freedom of Information Act 2000.

Is your MP on the select committee?

Committee Membership is as follows:

  • Mr Graham Stuart (Chair), Conservative, Beverley and Holderness
  • Neil Carmichael, Conservative, Stroud
  • Alex Cunningham, Labour, Stockton North
  • Bill Esterson, Labour, Sefton Central
  • Pat Glass, Labour, North West Durham
  • Damian Hinds, Conservative, East Hampshire
  • Charlotte Leslie, Conservative, Bristol North West
  • Ian Mearns, Labour, Gateshead
  • Lisa Nandy, Labour, Wigan
  • David Ward, Liberal Democrat, Bradford East
  • Craig Whittaker, Conservative, Calder Valley

August’s top bank holiday SEND stories

After a two week break, the Special Needs Jungle weekly curation of the best of special needs posts is BACK! I’ve tried to include stories I tweeted while I was away in Italy being subjected to torture by invisible mosquitos. My top holiday tip if you have teenagers like mine is to make sure your holiday home comes equipped with free wifi for those inevitable downtimes, so you are never plagues with cried of, “I’m bored!”

My boys still have another two weeks and a bit weeks off, and I intend to spend some of it taking them to our new gym, as I’m fed up of us all being locked in our little corners of the house on our respective computers (though at least I’m doing actual work). The gym is brilliant with a huge pool and great facilities, including a spa (for me, obviously) and, of course, free-wifi so that Son2 can sit pedalling the cycle machine while playing on his iPad. Well, it’s a start and a compromise, but at least part of him is moving.

Have a fab August bank holiday weekend and fingers crossed for good weather if you’re planning a barbecue or a last dash away! Next week – the paralympics!

Special Educational Needs reform update

Hope your summer is going okay! We’re just back from Italy where we were devoured by relentless mosquitos day and night.

Just thought you might like to read this pdf of the June 20th Select Committee on SEN at which Sarah Teather spoke about the SEN reforms. I wrote about it here but now the transcript has been published, so I’m putting it here for you to read in full, including the views of five experts including Jane McConnell of IPSEA.

This September, pathfinder trials will be getting underway, although in many areas, the thorny subject of who the key worker is still under discussion. If you’ve been approached to be a pathfinder family, I’d love to hear from you. Alternatively, if, like me, you’re a parent involved in the pathfinder development, let me know your views on the process.

There will be another update from the DfE at the end of October but if you’re interested with the process, reading this document will be informative.

School Exclusions: Statemented children 9 times more likely to be excluded

Statistics published by the Department for Education today show that pupils with statements are nine times more likes to be permanently excluded from school than those pupils without any SEN. Meanwhile, the number of pupils with statements of SEN receiving one or more fixed period exclusions is six times higher than for pupils with no SEN.

The Statistical First Release (SFR) provides information about exclusions from schools and exclusion appeals in England during 2010/11. It reports national trends in the number of permanent and fixed-period exclusions together with information on the characteristics of excluded pupils such as age, gender, ethnicity, free school meal eligibility, and special educational needs (SEN) as well as the reasons for exclusion.

The key points from the latest release are:

  • There were 5080 permanent exclusions from state-funded primary, state-funded secondary and all special schools in 2010/11.
  • In 2010/11 there were 271,980 fixed-period exclusions from state-funded secondary schools, 37,790 fixed-period exclusions from state-funded primary schools and 14,340-fixed period exclusions from special schools.
  • The average length of a fixed-period exclusion in state-funded secondary schools was 2.4 days, for state-funded primary schools the average length of a fixed-period exclusion was 2.1 days.
  • The permanent exclusion rate for boys was approximately three times higher than that for girls. The fixed-period exclusion rate for boys was almost three times higher than that for girls.
  • Pupils with SEN with statements are around nine times more likely to be permanently excluded than those pupils with no SEN.
  • Children who are eligible for free school meals are nearly four times more likely to receive a permanent exclusion and around three times more likely to receive a fixed-period exclusion than children who are not eligible for free school meals.

What are we to make of these statistics? I’m certainly no analyst but the figures surely speak for themselves. Of course, we can’t see what kind of SEN we’re talking about but the reasons for exclusion included physical or verbal assault against a pupil or adult, bullying or racist abuse and persistent disruptive behaviour among other reasons, most of which contain criminal aspects. These things should not, quite rightly, be tolerated, but it’s the reasons behind the category of persistent disruptive behaviour that interests me.

A mainstream school it would seem is, quite often, unable to cope with the high level of demands placed upon it by children with special educational needs and challenging behaviour and for these children, inclusion is the last thing they need. They need a specialised environment that can help them overcome difficulties of background or learning style or hidden disability so they have the same chance of a successful life as everyone else. Timely intervention is crucial for these children so that they can be identified and assisted long before things get to the stage of an exclusion being considered.

When thinking specifically of children with statements, I wonder what percentage of these SEN children, or of children with SEN but without statements, were excluded for persistent disruptive behaviour compared to the other reasons above. A child displaying persistent disruptive behaviour almost certainly has underlying issues, whether BESD, ADHD, ASD etc, that prevents them from accessing the curriculum and hence makes them feel that school is a waste of time.

A large percentage were also recipients of free school meals, which also indicates that poor children (with or without SEN) are hugely at risk of not getting the support they need in a mainstream school environment. Many may come from difficult family backgrounds and would be much more suited to a nurture group environment such as those set up by child psychologist Charlie Mead,  if only they existed more widely.

There is much interesting analysis that can be taken from these stats aside from the startling SEN figures, for example the comparatively high ratio of exclusions for traveller children (who may or may not have SEN). These would take far more time to ponder than I have available, but I hope someone does and lets me know.

Find all the stats here

 

Special Needs Jungle in the Daily Telegraph. What I really think

There’s a story about SEN in the Daily Telegraph today “Can 20 per cent of schoolchildren really have special needs?” by Peter Stanford. It’s already attracted lots of comments, some informed, others somewhat less so, shall we say.

The story is a follow on to other, recent reports blaming rising SEN figures on either bad parenting or bad teaching or both. Peter wanted to find out the real root of it, but it seems even he was flummoxed.

He interviewed me for the piece and the general gist of what I said is there, although I didn’t give up my TV career to go into school to help, I gave it up to be with my children at home because I decided it was a much better use of my time than giving good “TV smile”. Being able to help in school and see for myself how things worked was very useful, especially in the light of my boys’ difficulties. I could see for myself how different they were to other children, in a classroom setting. I could see that the teachers were, in my opinion, of varying quality, ranging from totally brilliant to inexperienced and out of their depth.

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. Responsible parents are faced with the knowledge that their kids are going to have to survive in a highly competitive world and are more vigilant when they see their child not doing as well as they might. Responsible parents just want their child to have the same opportunities as every other child to reach their potential – and that sometimes means accessing extra help through the SEN system.

Are these parents all middle-class? Many are, but far from all of them. I know this to be true from the emails I get. It doesn’t matter what class you are, the difference is how much attention you’re paying to your child and that has nothing to do with class.

Now, it is obviously true that a child does not automatically have SEN just because they are not at the top or even the middle of the school class. But a parent knows their child the best. When their profile of achievement is uneven or their social difficulties affect their ability to learn, intervention is warranted. In a mainstream school, a teacher has thirty children in the class. That’s thirty children of differing ability, different learning styles and varying levels of attention and behaviour, whatever their background.

Teachers aren’t super-human. They’re overworked, stressed (whatever the man from OFSTED says) and under-resourced. Can one person pay as close attention to the needs of thirty totally different children as each child requires? Of course not and the blame is not theirs. The SENCo might have three other roles in the school. The IEP may not be worth the paper its written on because it’s rarely looked at (through time pressure, not because the teacher doesn’t care).

This is why responsible parents have to step in to make sure their children get the help they need. They’re not “sharp-elbowed” or any other derogatory term. They are responsible, vigilant and determined, because if they don’t help their children, no one will. And don’t think that they are able to somehow ‘cheat’ the system. Only around 2% of children actually get a statement – far less than should have one in my opinion, but those that do have been through an unforgiving assessment process of experts and, sometimes, the scrutiny of an appeal to the SEND Tribunal

And what about those children who are not blessed with determined parents like these? The ones who are often put on the SEN register because it’s the only thing in a teacher’s toolbox to give them a leg-up? This is the huge inequity of society. These children often fall through the cracks. They end up in a continuing cycle of deprivation. They may even end up in the criminal justice system.

They 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. Former head teacher, now an Educational Psychologist, Charlie Mead, has an answer and it’s not rocket science. He has instigated ‘nurture groups’ in secondary schools with amazing results.

In this presentation he describes how nurture groups in mainstream secondary schools can enable children with “special educational needs” to receive the support they need and improve their educational outcomes making the best use of scarce resources. Watch his presentation below. To see him speak, book for the TAPF SEN conference in June at this link

Home educating a child with special needs

Many parents who have children with special needs seriously consider home educating their child. It throws us lots of issues – especially if they are statemented. Today. home education expert, Fiona Nicholson, who has given evidence to government committees on the subject of elective home education, talks to Special Needs Jungle about these issues and how to go about teaching your SEN child at home.
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Some parents decide when their children are very young that school is unlikely to meet their needs. But most children who are home educated did go to school for a while first. When it comes to the crunch, many parents feel they have no choice but to home educate because of problems in school, especially when children are bullied. Children with special needs are often singled out because they are different.
Fiona Nicholson, Ed YourselfThe school day can be very long for a child with special needs and children always come home tired or angry. Many parents say it’s less tiring to home educate because they can go with the flow more. It may mean that parents have to give up their job in order to home educate, so I do get asked a lot of questions about the benefit system.
Children with special needs have an equal right to be educated at home. A significant number of autistic children are home educated and the National Autistic Society has information on its website about home education.
One parent told researchers: “the number of HE families in the UK is growing rapidly, as many are literally forced to it by bullying in the schools that the school system can’t/won’t protect their children from, and/or by the failure of the schools to decently address special needs. We are one such family, and know many others. We are not choosing home education as an alternative lifestyle choice, but have been left with no other acceptable option.” Another parent commented “regrettably, we would never have considered home ed until forced into it because of bullying. We now wish that we had always home educated her.”
Home education isn’t a decision which is taken lightly. Parents are anxious about how children will make friends and they do worry about whether they are keeping children wrapped in cotton wool or protecting them from the real world.
In fact there are many social opportunities for home educating families. The internet is widely used by parents to link with others in their area and nationwide. There is also a thriving internet community specifically for home educating parents with special needs children. Parents who are just thinking about whether they could possibly manage to home educate and what it actually involves can join and ask questions from parents who have already made the transition.
If the child is a registered pupil at a mainstream school, the parent  wishing to home educate should send a written request to the school for the child’s name to be taken off the  school roll. You don’t have to ask for permission. It’s the same process whether the child has a statement of special needs or not. The statement will need to be modified to take off the school’s name and to say that the parents have made their own arrangements.
If the child is a registered pupil at a special school, the parent does require  consent from the local authority before the child’s name can be removed from the school roll. Some local  authorities will ask for further information about how home education will accommodate the child’s special needs.
Even when children have a statement of special needs, the local authority doesn’t have to help or provide services once the child is out of school. On the other hand, the statement isn’t enforceable on the parents, as long as they are making provision for the child’s special needs. This gives families more responsibility but more freedom as well.
In England the Department for Education has said that the local authority can claim back money spent on SEN support and the latest Government rules say this can be agreed on a case-by-case basis with the family. The total amount that the Council can claim is the same as schools receive for each pupil. However, it’s totally up to the local authority and not many have taken it on board yet. You need to be mentally prepared for the possibility that you’ll get nothing once your child is out of school.
Once parents are home educating they obviously have less opportunity to go out to work and earn a living. Carer’s Allowance is payable to people who are caring for  a child or adult receiving Disability Living Allowance at medium or higher rate. Home educating parents – including lone parents – are entitled to claim Jobseeker’s Allowance if they are prepared to agree to the qualifying terms and conditions. Home educating parents can also claim Working Tax Credit and Child Tax Credit for self-employment which can include working from home.
Links: 
My website has a lot of information about home education law and SEN and also about state benefits http://edyourself.org/

Advocates For Children – a FREE SEN legal advocacy charity.

The world of special needs is, I have discovered, populated with extraordinary people  – both those who care and do their best for their children and professionals who go the extra mile to provide whatever help they can.

One such lady is Gloria Vessel, a barrister who has for many years carried out pro bono work for families affected by disabilities and SEN. In a decade of helping families at the SEN Tribunal, Gloria has never lost a case.  However, it became clear that she could not take on all the children whose parents were asking for her help so she founded the charity, Advocates for Children. Today, Gloria has written about the charity and its work exclusively for Special Needs Jungle.

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For parents of children with disabilities it really is a jungle out there, especially when it comes to getting the right school, or the right schooling for your child. Parents are faced with a bewildering mass of Codes of Practice, deadlines, and the ever present prospect of having to take your case to a Special Educational Needs Tribunal. Advocates for Children is here to help.  We are a relatively new charity; only three years old.  Our volunteer Advocates help children with disabilities and life-limiting conditions aged 4 – 16 with problems at school.  Our services are free.

Advocates For ChildrenProblems we deal with include getting the right educational support for a child at school, getting the right school for the child,  giving parents advice on where they are going with their child’s case, or addressing the issues of bullying or abuse of children. We believe that when you are helping children one size does not fit all.  No two cases are ever the same, and we know that every child and every family are unique, so we devise help to fit the needs of each family and each child.

Your child is never just a case number to us.  Your child is a unique and special individual that we are privileged to advocate for. It is our policy to see each child that we Advocate for, so that we know best how to help them.  Our central focus is always what is best for the child. We also give advice to parents over the telephone, where they simply have a query that they need some help with.

For many parents we can resolve a problem with one call. If parents want to be legally represented, we can help you to find the right solicitor, and to advise you on what you need to do.  In certain circumstances, we would represent our own clients at a Special Educational Needs Tribunal, however we try as hard as we can to avoid a Tribunal if that is possible. The law is a vital tool for parents to be able to get help for their child, but we urge parents not to see it as a first resort, or as the only resort. So often parents will ring asking about Tribunals, or they are even be on their way to Tribunal, without ever having been told, or having been able to find out, what they actually need to do to give themselves the best chance of success at a Tribunal, or even understanding exactly what is involved.  That is a dangerous position to be in.  Knowledge is power, so we help to give you that knowledge.

It is also amazing how many parents have been told that they need to go to Tribunal without ever having really met with the Local Education Authority to discuss their child’s case.  We can review a case and see where there are areas of agreement, as well as disagreement, and see if a solution can be arrived at by negotiation and not by immediate legal action.  That benefits both sides and benefits the child.  And, if it comes to a Tribunal, the parents will be much better prepared, and will know what they need to focus on.  It really is good to talk! A Tribunal is a legal procedure and the evidence you put forward is vital to your case.  We advise you on what the evidence is that you need.  You know your child inside out, but a Tribunal Panel does not.  They have to decide on what your child is all about by the written evidence in front of them.  So, you need your written evidence to help you make your case.  Of course you can talk about your child, but you need written evidence too.

As a barrister I have the greatest respect for and faith in the legal process, but I also know that the better informed parents are the better equipped they are to make all-important decisions for their children before that process begins. Advocates for Children believes in the dignity of the child.  We champion the legal and human rights of the children we Advocate for and our watchwords are ‘Listen, Respect, Care’. Our Trustees are all Mums and Grandmums who really understand what our clients are facing and that is what we feel is our greatest strength, as it drives all that we do for these special children. Our Mission Statement is; To enable children with disabilities to have the opportunity to fulfil their true potential and have their chance to shine. We are proud to do just that.

http://advocatesforchildren.org.uk/

Catch up with special needs news you may have missed this week

Another Friday is here – just one week to go before my boys break up for an almost-month-long Easter break. Here’s my weekly round up of the best special needs and disability stories and blogs I’ve spotted this week. As ever, if you have one to share, list it in the comments of this blog so others can enjoy it!

If you enjoy the Special Needs Jungle site, or have been helped by it, I’d be delighted if you would please nominate specialneedsjungle.com in the BritMums Blogging Awards in the CHANGE! section

Got the statement? Great, but your work’s not over yet.

Many parents are so relieved to get that letter saying the LEA has decided to issue a statement of special educational needs for their child that they think their work is done. And they’d be very, very wrong. A statement is useless if it does not define your child’s needs completely and set out in detail how they will be met.

When you receive your draft statement, you or your advocate, must ensure that all your child’s special educational needs have been properly identified and stated in part two of the draft statement. Then, you must ensure that every stated need should be met with appropriate provision in Part three.

Each special educational need specified in Part 2 must be met by provision specified in Part 3: R –v- Secretary of State for Education ex parte E [1992] 1 FLR 377, CA

If your child’s needs have been inadequately stated in part two, now is the time in your response (which normally needs to be within 15 days) to make sure you add them so that they can be included ans provision provided.

This process is not made easier by the way the statement is set out. Instead of listing Need, then Provision next to it, all the needs are set out then all the provision, so it is up to you to match one against the other. I would recommend using a table to do this – one column headed Needs- Part 2, the next, Provision, Part 3 and a third column entitled,  My Comments.

Then go through part two and pick out each separate need and list it in a separate row under the first column. Then go back down your list and search through part three of the proposed statement document for a matching provision. The statement document has evolved to be quite narrative in format, often just pasting in chunks from the Ed Psych report (in our case from the Ed Psych report that we had paid for ourselves) This does not necessarily mean that the statement writer has understood your child’s needs, just that they know how to copy and paste.

Part 2 can include narrative description of a child as well as specifying SEN (cf R –v- Secretary of State for Education ex p E [1992] 1 FLR 377): W –v- Leeds CC [2005] EWCA Civ 988, [2005] ELR 617, 29/7/2005

So your final table should have all your child’s needs in column one that have been stated and with your own additions if needed (make sure it is easy to understand you have added these yourself)

In the second column, which reflects Part 3 provision, you should have listed everything you can find that matches with the needs. This may well be eye opening.

Then in the third column make your notes and observations about the provision.

Then go back through Part 2 and Three and make sure you have covered everything. You may well find that there are unstated needs or needs that have been stated that there is no provision for. Of course, you may see that your statement writer has done a sterling job and everything is as it should be.

If you have non-educational needs and provision listed in part five or six, ensure this is also adequate. Sometimes speech and language is listed as non-educational. If your child needs this help for living (eg eating) then is is non-educational. If they need OT or SLT for learning – ie, writing help for dyspraxia, communication skills, then is should be in parts two and three as educational provision.

You can ask for a meeting during this time with the LEA and after the meeting you have another 15 days to ask for further meetings. Within 15 days of your last meeting, you can send in any more comments. If you would like more time to comment, you should talk to your case officer.

There should be no school named in part four at the point of issuing a draft statement. But be aware that the LEA is not obligated to name a school that can provide ‘the best’ education, just one that provides an ‘adequate’ education that meets your child’s needs.

The LEA/SENDIST is under a duty to secure provision which meets the child’s SEN but is not “under an obligation to provide a child with the best possible education. There is no duty
on the authority to provide such a Utopian system, or to educate him or her to his or her maximum potential. …”: R v Surrey CC ex p H (1984) 83 LGR 219.

It’s a very good idea to research suitable schools before you even know if you’re getting a statement so you know what type of school can meet your child’s needs. Often you will know exactly which school you want them to go to – and that’s the next step!

SEN-Getting Started With Statements

This advice and more is detailed in my SEN statementing book, Special Educational Needs, Getting Started with Statementing. It’s available in paperback or ebook from Amazon & WH Smith online or paperback from Waterstones.com. Or you can order it from your local bookstore. So many SEN books are expensive so I have priced this at just £6.99 to make it accessible to as many parents as possible.

Legal Quotes Source: ISC

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

Exciting news – a conference speaking invitation

I have exciting news – I am to be a keynote speaker at the forthcoming SEN Conference, Towards a Positive Future that is to take place in Newbury in June. I will be talking about being a parent of two sons with autism and how parents-carer forums such as Family Voice Surrey, of which I am a committee member, are helping to shape SEN services with the SEN Green paper pathfinders. Surrey will be trialing, among other areas, the proposed Education Health and Care Plan for which I attended a day-long meeting yesterday.

Apparently, children with existing SEN statements will not automatically be moved to an EHCP although their parents can request it. They may be moved at a transition point if appropriate, however.

It is clear from the meeting that there is much work to be done and in a relatively short time as it is expected the new procedures will be brought in by 2013/14. There are some positive proposals and still a lot of detail to be worked out, but the general principle is that the child and family should be at the centre of the process. It’s not very clear to me why this isn’t already the case.

The whole system at the moment is adversarial and there is much distrust on both sides, so to make the new process succeed there needs to be a major cultural shift towards working together for the benefit of the child. At the moment LEAs are (rightly or wrongly) seen as penny-pinching, budget-not-child focused parent-haters who are determined to give as little as they can get away with. LEA staff, meanwhile see some parents as just trying to bag a statement to get their children into the best schools that cost the council hundreds of thousands of pounds a year when (the LEA feels) local provision would do just as well. There are many parents left vastly out-of-pocket by legal fees as they pursue the most appropriate option for their child.

Personally, I can’t understand why any parent would head into the stressful, potentially expensive jungle of statementing unless their child has significant needs that are not being met within current school resources – I mean, why would you put yourself through that? Every parent I have encountered who is seeking a statement has experienced their child going through years of difficulties, under-achievement and unhappiness before they become convinced that this is the only route. I’m sure there are exceptions, but they must be just that – exceptions.

Anyway, by the conference in June I expect some parents will have been recruited for the trials and we will have more detail of how the final system will look. Other speakers include the National Autistic Society president, Jane Asher, Janet O’Keefe, editor of “Towards a Positive Future”, Educational Lawyer, Clive Rawlings and Kevin Geeson of Dyslexia Action among others.

Below is a link to a booking form that you can use with all the details on.

Towards_a_Positive_Future_Conference_2012_flyer

Empowering parents is the goal for Pat

I’m delighted today to introduce a guest blog post from Pat Bolton, who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  www.parentsinpower.btck.co.uk  Pat works at the coalface of special educational needs and helps parents every day to get the support their children need.

*

Parents In Power is a Parent/Carer Forum. Every Authority has a parent/carer forum and to find out more information or where your own parent/carer forum is located in your area go to www.nnpcf.org.uk . We are independent and  work with some of the most amazing parents of children with disabilities, their strength and fortitude is second to none, no matter what is thrown at them week after week.

I have a son who is now a young man, 19 years old with ADHD, Dyspraxia and Autistic Traits and he is the most awesome of people. His brother who is 17, puts up a lot with his brother and is one cool dude, but one thing is for sure they love each other to bits and boy do they look out for each other.

So I have walked that walk, that long and frustrating journey and I have to say, sorry folks, but it doesn’t end at  16. But I was lucky enough to get my son in an Independent Special School and paid for by the Local Authority.

Every parent/carer that I come across without a shadow of a doubt tells me they are sick of fighting for what they feel their child simply needs and is entitled to in order to lead a normal a life as possible and for their child to reach their potential in whatever that means.

Their problems are nearly always linked with their child’s school and the frustration and energy it takes in trying to get this part of their child’s life right, I mean let’s face it, what a massive part of their lives it is.

Meetings are daunting at the best of times, but when you get into school for a meeting and there is yourself and 7/10 professionals around the table it can sometimes actually be frightening. To prepare parents for such meetings I go through all the issues that need to be addressed, and the points that the parents feel they must point out.  We write them down on what can sometimes be a long list, so in the meeting the parent is satisfied that they have said everything they want to. Or if it is too emotional for them, I will bring these points up for them.

I have gone into meetings where the parents have been an absolute quivering wreck, feeling sick and just wanting to go home, yet just by me saying, “I am with you, you are not alone, I am there to support you” brings out the best in the parent. They are assertive, they get their points across and work down their list of questions. I minute it all for them. When they leave the meeting, although they hardly remember a thing that has been said, they feel so empowered.

That is one of our main aims, to empower parents to be competent and confident in supporting their children.  My biggest concern over the years has been to ensure that when a parent gets their child’s statement to ensure that it is quantified and qualified. So it does not say something like a ‘ systematic programme of speech therapy’. What does that mean? One hour a day,  a week/month/term and by whom. If it isn’t quantified and qualified how can it be legally challenged? A school might interpret that as an hour a month, a parent might interpret that as a couple hours a month. It needs to be fully explained in the statement.

Another part of school life that has really annoyed me are exclusions and as I write this I am eagerly waiting  for the release of the results of the Children’s Commissioner, Dr Maggie Atkinson’s inquiry into exclusions: http://www.childrenscommissioner.gov.uk/  This is due out 19th March 2012 and I will reading this with a fine toothcomb, hoping she has captured the inequalities of exclusions for children with Disabilities, especially those with disability related behavioural difficulties.

My son was excluded 11 times in one year, what did he learn from this? Simply that every time he wanted a couple of days off school to misbehave,  it worked. No matter how hard I worked with the school and I worked a lot harder than the school did on this one, they still excluded him until the day the big permanent exclusion came. My son and I cried together all weekend. The result was an independent special school which could not cater for his academic ability.

For those just embarking on this journey I wish you luck, get as much expert support as possible you will need it.  If you don’t know where to start contact your local parent/carer forum, website address above and they will advise you.

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.

Have you ever applied for a Statementing Assessment for your child? If so, take this poll!

I’m carrying out a poll into how people fare when they initially apply for a Statutory Assessment for their child. If you’re been through it please take the poll and share the poll with as many people as possible. The results will be published in the New Year. Thank you!

Christmas Giveaway – a copy of my SEN Book

SEN-Getting Started With Statements‘Tis the season and all that, and I’m giving away one copy of my SEN book, Special Educational Needs – Getting Started With Statements.

All you have to do is hop on over to my Special Needs Jungle page on Facebook and give it a ‘like’ If you already ‘like’ it, leave a comment on the page saying you want to be entered.

I’ll get my son to emerge from his Technolair bedroom on New Year’s Eve to pick the winner at random. And if you know my son, random is his middle name.

Merry Christmas!

https://www.facebook.com/SpecialNeedsJungle

Book Review of Special Educations Needs: Getting Started with Statements

Special Educations Needs: Getting Started with Statements – the parent to parent guide to getting your child the help they need

Reviewed by NAS Surrey Branch member Emma Searle, mother of a 4 year old recently diagnosed with ASD

SEN-Getting Started With Statements

“This is a brilliant little book. We are just starting on the statementing process and it’s a bit depressing to find that it’s such a battle, but it is refreshing to get an honest and real account of what happens. I really liked the detail on the process – for example, I hadn’t realised that you don’t have to stick to the form to give your evidence, but can write your own account. It was really useful to have all the detail and being able to read extracts from other people’s statements is invaluable.It shows you how to use the SEN Code of Practice – I haven’t seen any other examples of this. Because it’s written by parents for parents, it can give you information you don’t get on official we sites. I found it quick and easy to read and easy to dip into when you’re waiting at school for example.”

A huge thank you to Emma for taking the time to write the review and I hope very much the book has helped you so far. If anyone else has found the book useful and would like to leave a review, I would be delighted if you would post it on the Amazon book page

SEN Lawyer Links

If you are looking for additional help, there are free services such as IPSEA and SOS!SEN as well as the NAS Advocacy Service is your child has ASD. You may decide, however, that you would prefer to use the services of an SEN Expert Lawyer. Below are the names of some such experts. If you are an education lawyer not on this list or you know of a lawyer that you can personally recommend, please contact me

  • SEN Barristers –  Gulshanah Choudhri has a child of her own with Down’s Syndrome, so as well as legal expertise, she has a personal understanding of the SEN issues. She stresses that, due to recent changes, she can offer a full service from initial consultation through to Tribunal, if necessary.

“With Gulshanah fighting in your corner and bringing her incisive mind and laser like cross examination skills to bear upon proceedings, you can feel confident that she will expose inconsistencies in the expert witnesses of the LA. I for one have had the privilege of seeing her in action and cannot commend her services highly enough.” Barrie Griffiths, Portsmouth

  • Douglas Silas Solicitors -I have met Douglas and he is dedicated to the SEN cause. He also has an extremely informative website. (North London based)
  • SEN Legal  Principal Solicitor is Melinda Nettleton and she is supported by Karen McAtamney and Adam Ottaway Friel. (Suffolk based)

“SEN Legal represented us and managed to secure us a placement at More House School. We definitely couldn’t have done it without them. Sally Brockaway

  • Maxwell Gillott – Quoted in Chambers and Partners 2011: Education: Individuals, Elaine Maxwell has been advising on provision for severely disabled pupils. Sources say she has a “phenomenal understanding of the issues that parents dealing with SEN face.” (Various locations)
  • Anthony Collins LLP I have met Inez Brown of this company and she is very well informed, highly experienced and committed. They are based in Birmingham
  • Children’s Legal Practice “We have acted in connection with numerous appeals to the Special Educational Needs & Disability Tribunal. These appeals have included cases involving statutory assessments, contents of statement, ceasing to maintain statements and Part 4 of the statement.” (Hampshire based)
  • AM Phillips “As both a professional, working within the field of education law, and as a parent of a son with special educational needs, I understand the pressures that parents experience on a daily basis.” (London, Wales)
  • Sinclairs Law “leading experts in the field of Special Education Needs (SEN) & Education Law, acting throughout England & Wales.” (Birmingham, Cardiff, London based)
  • JMW  “JMW Solicitors are experts in all aspects of special educational needs law; for over a decade JMW Solicitors’ medical negligence team has been dedicated to this tricky area of the law.” (Manchester/Salford based)
  • Moore Blatch “Let our wealth of experience in this niche area of law work for your child” Leena Hurloll, Senior Solicitor (South)
  • CDLaw (Robert Love) “Christopher Davidson’s experienced education law team is dedicated to helping ensure that your child receives the education he or she needs.” (Cheltenham based)
  • Fisher Jones Greenwood LLP “Fisher Jones Greenwood’s education law advice service is available to anyone with concerns about a child’s or their own education.” (Essex based)
  • Turners Solicitors “We specialise in representing parents of children with special educational needs whatever their diagnosis” (Wales based)
  • Langley Wellington “Langley Wellington has a very experienced team dedicated specifically to all aspects of education law.  The team’s success rate in SENDIST Appeals is around 90%.” (Gloucester based)
  • Match Solicitors “Match Solicitors are experts in assisting children with special educational needs.” (London based)
  • Stones Solicitors “Do you  have matters relating to schooling which you are concerned about or do you know others who might? If the answer is ‘Yes’, then Stones is able to offer advice on all Education Law matters.” (Devon based)
  • Allen & Co “Education law is our primary area of expertise. Advice and help is provided on school admission appeals, exclusions, school transport, special educational needs (SEN), equality and discrimination matters and more general education or school issues.” (Buckinghamshire based)
  • Education Advocacy “Education Advocacy is a specialist legal consultancy, which provides legal support and guidance to parents of children with  special educational needs.” (Somerset based)

“We used Nigel Pugh of Education Advocacy. He was very reasonable and I do not feel the outcome would have been the same without him. My son is now fully funded at a special school”  J Faux

  • Advocacy & Mediation “We are experts in supporting parents and carers of children with special educational needs and disabilities”

“I can highly recommend SEN advocate Fiona Slomovic of Advocacy & Mediation. Fiona helped secured a place for my AS son at a Cambian AS-specific school with a waking day curriculum without going to tribunal. I recommend her to everyone. She is highly experienced and wins most of her tribunals” A Elliott

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)

About SOS!SEN, a fantastic SEN charity

SOS!SEN is a small charity based in Middlesex that offers a fantastic service to parents who are trying to secure the right educational support for their children. It was started by a small group of individuals who had spent much of their lives in education or related services. They now have a team of volunteers made up of parents and friends who have children with special education needs. They deal with an ever growing number of cases, including representing parents at the SENDIS Tribunal.

SOS!SEN have a telephone hotline and lots of useful information on their site. They are well-versed in the tactics of local authorities and during 2009, the SOS!SEN helpline fielded 6,000 calls. About 30 per cent were new referrals.

They offer a free, friendly, independent and confidential telephone helpline for parents and others looking for information and advice on Special Educational Needs (SEN). We concentrate on helping people to find their way through the legal and procedural maze which is so daunting to so many who try to obtain satisfactory provision for a child’s special needs.

Their aim is to empower parents and carers, and to encourage them to become sufficiently confident to tackle for themselves the obstacles and difficulties that arise in battling for SEN rights. In turn, they hope they will use their knowledge and experience to help others.

They offer our services throughout England and Wales and run monthly walk-in advice centres in Twickenham, Thornton Heath and Aldershot, so that parents from surrounding local authorities such as London, Surrey, Hampshire, Kent and Middlesex can come to see them, if they have a particularly complex problem.

They are also launching a series of workshops that will be very useful for parents to attend about the various stages of statementing.

If you are on the statementing road and you encounter problems, do get in touch. The workshops mentioned above will help get you started as well.

Paperback of my Statementing book now available at Amazon

SEN-Getting Started With Statements

Great news! The paperback of my SEN parents’ book, “Special Educational Needs – Getting Started With Statements”  is now available on Amazon.

It currently says out of stock but it’s only gone on today and you should be able to order it, with free delivery. It’s also available in Kindle format and hopefully, Amazon will get around to linking the two pages as soon as they can.

If you buy it, and find it useful, please post a review on Amazon to help others.

Please share this post as widely as you can to inform other parents who may be helped by the book. Thanks!

http://www.amazon.co.uk/dp/1908603585

SEN conference, Towards a Positive Future, Review part one.

I attended a very interesting conference on special educational needs on Friday. It was held to mark the launch of a new organisation aimed at providing a ‘one stop shop’ to parents needing to find professional services such as speech and language and occupational therapy for their children. It aims to establish a database of professionals who can work with children in teams that talk to each other and deliver a seamless service for the child. It’s still at an early planning stage and its founder, SLT professional, Janet O’Keeefe, is actively looking for ideas and people willing to join her.

The event also marked the launch of Janet’s book, Towards a Positive Future, which I have written about here.

The conference had several interesting speakers some of whom I hope to be able to bring you more from on this site in the weeks to come. The event was held at the Mary Hare School for hearing impaired children near Newbury. The school does inspirational work in providing an education for its pupils, helping each through individually designed hearing equipment. As a non-maintained state school, the school’s head, Tony Shaw, said they are ‘not considered to be part of inclusion’ and have had their funding cut by central government. This, despite the Education Secretary, Michael Gove, himself having a sister with a hearing impairment.

The school has had to diversify to survive, establishing an ear mould lab that services the NHS. Despite this, Mr Shaw says they never forget what they’re there for. He said, “At the core are the children we have the passion of serving.”  It’s a sad fact that, in the politics and cost-cutting of government both local and national, this message is too often overlooked.

Another speaker was Kevin Geeson, CEO of Dyslexia Action, who talked about the opportunities and risks of the Green Paper. He highlighted concerns about the assessment of hidden disabilities such as dyslexia in that it may not be picked up early enough and the question of who will control the personal budgets given to children to provide for their SEN. Mr Geeson said the Green paper brought an opportunity to provide the proper skills and support for teachers to include all children in the curriculum. He said, “Good teaching for children with hidden disabilities is good teaching for all.”

Education solicitor, Inez Brown of Anthony Collins solicitors, set out the legal framework and funding of special needs and pointed out the problem with parents appealing against SEN decisions for children at the new Academies because the Academies do not fall within the Education Act. She also pointed out that the Green paper removes Speech and Language and Occupational Therapy out of educational provision – something every parent of a statemented child should be aware of. This means that the local authority cannot be challenged about these things at a Tribunal.  Ms Brown also made a startling  statement about the trialling of the new green paper which has just been announced and I am hoping she will be writing more about this on this site very soon.

The conference also heard from internationally acclaimed academic, Professor Heather Van Der Lely who has developed an early-identification test for dyslexia called GAPS. I will write a separate piece about this so won’t go into detail here. The professor pointed out that seven per cent of children have a specific language impairment – seven times the incidence of autism. She is trying to bring about the widespread use of GAPS which, she says, is quick, efficient and highly accurate. The crucial issue is, of course, that there are not enough Speech and Language Therapists to help all those that the test could identify. Perhaps the government should focus on how to recruit more SLTs into the profession and create a environment that enables enough of them to stay within the NHS.

The next post will detail the speakers from the afternoon session of this very enlightening conference.

Links for this post:

http://www.dyslexiaaction.org.uk

http://www.AnthonyCollins.com

GAPS

Mary Hare School

Twitter: @JanetOKeefe@kgeeson

One Mum’s Statementing Views

Here is a parent’s view of the statementing battle for her son and her advice about the process. I wish I could say this mother’s story was unusual, but other parents will recognise features of it in their own efforts to get the right education for their children. Thank you to the mum who has kindly allowed me to publish it here.

“Our first hurdle was with the school not recognising or knowing how to cope with a processing issue – if the child can’t process what the teacher is saying, learning doesn’t have a chance. As parents, it took us a long time to realise the implications of this at home and we experienced outrageous behaviour not realising that the child wasn’t just being belligerent but that his understanding of what words meant and the complexity of how they were presented to him were totally beyond his comprehension. Any number of parenting books didn’t fit the bill until we found ‘The Explosive Child’ by Ross Greene.

As soon as you feel your child has a learning issue, make sure you keep notes of meetings you have with the school Senco and email them to them after each meeting to confirm that your recollection is correct. (Also ensures that they have a record on file.) Challenge learning plans – if your child isn’t meeting the targets on learning plans, try to get to the bottom of it rather than allowing the school to gloss over it.

Schools, the School Educational Psychologist and the Council will procrastinate as much as they can – the classic is having to wait weeks for meetings and then having them rearranged at last minute to push them further back. Meetings cost money and budgets are tight so your child’s needs are not the top priority – he or she really does need you to fight their corner. This is really hard for the parent who doesn’t feel particularly articulate or confident but they need to overcome this reticence.

Private tests (OT, Ed Psych, Language, etc) are really expensive – ensure that the recommendations are very clear and quantifiable stating how many hours each week of what help is needed and by what level of professional. Any opportunity to put an untrained teacher’s assistant to provide specialist help will be taken if there is any ambiguity in the recommendation.

SOS!SEN provides a great service in Twickenham. We used solicitor Robert Love because we felt incompetent to fight a case where the school wasn’t supporting the statement application (the teacher wanted to but the school wouldn’t!) One of the most galling aspects of it was when the Council didn’t turn up to the tribunal – surely there should be a case for Councils paying for the cost of the tribunal when they abuse it in this way.”

You can read more stories like this in my new book, Getting Started with Statements. Ebook out now, paperback coming very soon.

 

My review of new SEN book, Towards a Postive Future

Book cover of Towards a Positive FutureThis easy-to-read book by Janet O’Keefe gives a valuable overview into the world of SEN support and the difficulties faced by parents in trying to access it.

It sets out in simple terms the current system for readers and gives some good advice about how to seek the right experts for your child. It also offers pointers for those experts themselves.

The book explains the most common social and communication disorders and helpfully illustrates them with personal stories garnered from her broad experience as a Speech and Language Therapist who has given evidence at SEN Tribunals many times. The stories will have a resonance with many parents and remind the reader that special needs should always put the child at the centre of the process.

Perhaps the most interesting part of this book is the section towards the end where Mrs O’Keefe challenges parents and educators not to blame others for society’s failures but to take action themselves to make the landscape better for our most vulnerable children. A very interesting and extremely useful read recommended for both parents and professionals.

You can find the book on Amazon or at the Publisher site.

Janet’s Wordswell site is here

The conference site is here

Special Educational Needs – Getting Started With Statements Unique new parent-to-parent ebook launched to help SEN children with ‘hidden disabilities’ get the help they need.

Today my book on is launched as an ebook. Here is the press release 

FARNHAM, 10th October 2011: A mother of two autistic boys from Farnham, Surrey has published a new book aimed at helping other parents navigate their way through the special educational needs jungle.

While there are other books about the SEN system available, this book, by the creator of the www.specialneedsjungle.co.uk website, Tania Tirraoro, takes a parent-to-parent approach, explaining in detail how to prepare an application for a statutory assessment of special educational needs.

Tania said, “Since I started my website in 2008, it’s become clear how daunting parents find the SEN process. Many parents of children with ASDs or dyslexia are affected by the conditions themselves and need help with organising and getting started on their applications. I’ve helped many parents with their applications and I realised that what they need is not an overview of the whole system that you find in other books, but a basic ‘how-to’, written in an accessible way. That is what I hope I’ve achieved.”

The book has a foreword by SEN campaigner and former parliamentary candidate Maria Hutchings, who famously hand-bagged Tony Blair during the 2005 election over the closure of special schools. It also contains a section on what to expect if you end up at an SEN Tribunal by experienced SEN Advocate, Julie Maynard.

Maria Hutchings said, “I only wish that I when I was going throug
h the statementing process striving to get John Paul the right education, speech therapy and respite for the family, that I had read this book. Being the mother of two children on the autistic spectrum, Tania has a deep sense of empathy for what it feels like when you have to fight for everything to ensure your child’s future. Tania captures that deep sense we all have as mothers and carers, to do the very best for our precious children.”

The book takes parents through the process from a very personal viewpoint with examples from successful applications and relevant quotes from the SEN Code of Practice and Education law.

Tania said, “I’ve been through the process twice and my boys, who both have Asperger Syndrome, now have access to the kind of education they need to help level the playing field in their future lives. ASD is a lifelong condition and they will always battle the difficulties of their Asperger’s, but because I had the ability to present their cases methodically, they got the help they need. Why should other children not have the same as my boys?”

The book is available now in all ebook formats from Amazon Kindle and Smashwords.com. If parents do not have a Kindle, then Kindle for PC, ipad or smartphone can be downloaded for free from Amazon.co.uk. It makes this book accessible to every parent, instantly.

It will be available in paperback in the next few weeks.

About the Author:

Tania Tirraoro is an author and journalist and has already published two women’s fiction novels, This Last Summer and Sweet Seduction, one as an ebook, the other available as ebook and in paperback. She is a former television and radio journalist, having worked as a reporter and news presenter for Meridian Television and NBC/CNBC, and BBC Radio Berkshire among others. She also works as a press consultant for three heart rhythm charities.You can find the SEN site at www.specialneedsjungle.co.uk.
Tania’s author site is at www.taniatirraoro.com

Twitter: @TaniaLT  @SpcialNdsJungle

E-Book Links:

Amazon.co.uk | Amazon.com | Smashwords

Tania Tirraoro can be contacted at info@specialneedsjungle.co.uk

Back to school – but is it the right one?

For the first time since my sons started at their special school, this term we have had no fees to pay as they are both now being funded by the local LEA. I’ve written in post passim about finding our way through the special needs “jungle” of statementing and I hope if you are in that position now you will find some of the things on this site useful.

Indeed, I am only too aware of how many people are going through the process and are having a much tougher time of it than we did. We applied at a time when our LEA was reassessing the way it looks at Statutory Assessment, Statementing and Funding. For children with high-functioning AS, like our boys, it recognised that it had little suitable provision and that these children, who may have so much potential, so often fall through the cracks. They may end up in the benefits or mental health care system when they become adults because they have not received the social education they needed and cannot put to use  any academic education they gained into a worthwhile career. Or any career.

If they are lucky, they may have had supportive parents and may have been able to progress to university and into a job in a narrow-focused industry (sciences, accounting, research) where their ability to do the job is more highly prized than the ability to make lively and reciprocal conversation. These are likely to be the young people from the very highest and most able end of the spectrum, who are from middle class backgrounds with university educated parents themselves.

But too many AS young people will be in low-paid jobs far below their intellect because they cannot cope with the social interaction needed to progress up the career ladder and they have not had access to or found a route through to the support they need to thrive. Others may find their ASD so disabling that they will have to live in sheltered accommodation, relying on Disability Living Allowance and other benefits.

Now, it is not true to say that if you don’t reach the top of a well-paid profession you won’t be happy. For many people with AS, happiness comes just from having a friend to talk to or being able successfully to cope with everyday living. Many people with AS get married and have families of their own and are perfectly happy within their own circle, thank you very much.

But just think how different it could be if everyone who was diagnosed with Asperger’s Syndrome got the help they needed at an early enough age for it to make a significant difference to the outcome of their life. Yes, some may still need to live in sheltered housing and will work in in low-stress jobs because their condition dictates it. But for others it could mean the difference between a life of just coping and a life of thriving. Every single person with AS should have access to the right kind of education that my boys are lucky enough to be getting.

Parents who are worried that there my be something socially ‘different’ about their child should not just bury their heads in the sand and hope they will ‘grow out of it’. They should not just shrug and say their child is ‘coping’ at school when you really know they are just keeping their heads above water. Your kids have one shot at education and one shot at a successful and happy life and it is the duty of their parents to ensure they have the best opportunity of achieving that. Even if the option of a specialist school is not open, you can speak to your school’s SENCo, make your concerns known, ensure they are getting appropriate support at school and do your own research as well. Parents’ instincts are not often wrong.

I am speaking here from experience. We were once in the position of knowing something was different about both of our boys but not what to do about it. I spoke to their teachers, I researched their symptoms, I got them referred to a paediatrician. We got a diagnosis. We were told we’d never get a statement for either boy as they were too able so not to bother trying. We were told they had to be three years behind to get a Statutory Assessment. We were told all sorts of inaccurate things by teachers who didn’t know any more about Statementing than we did.

We didn’t listen and now we have two statements for both our sons who are both in the top few percent for ability. More than that, our LEA is paying for them to go to the school of our choice where they can be supported. It can be done. Your battle may be harder than mine; you may have to go to Tribunal. You may live in one of those LEAs like Hampshire that think brinkmanship is the order of the day. These councils will oppose you to the very last second in the hope that you will be scared off or you will end up broke, broken or both. They don’t care as long as they don’t have to shell out for your child. Shame on them, but do not be deterred. Even when you are tired and stressed and thinking of giving up, remember who you are doing this for and that they deserve the best you can give them.

If you need advice you can always leave a comment here and I will try to help or point you to someone who can. And things are changing. There are politicians out there who know about special needs, and parliamentary candidates such as Maria Hutchings who are fighting every day to improve the situation for young people with ASD. We just need to get the ones who are actually in the government to make sure that reviews that are currently being undertaken are acted upon so that the next generation of young people on the spectrum don’t face the same uphill struggle as ours do.

Journey’s End for our Statement – And a Brighter Future.

Just to update the post about my son getting the statement of Special Needs, we’ve just heard that the LEA has agreed to fund him at his independent special school. Great news and what a relief!

When they issued the draft statement they said they were concerned how he would manage in mainstream secondary.. so they were going to recommend mainstream secondary with support. Now we know, don’t we, that for many children with Asperger’s, it’s not a question of someone sitting with them or being withdrawn into social skills groups for so many hours a week. It is more a constant nudging that they need and a vigilant eye for when things are starting to go wrong.

During my research, I spoke to several mainstream SENCOs (Special Needs Coordinators). They are all dedicated to their pupils and do a good job in difficult circumstances, but one said to me that they sometimes “don’t hear from their ASD students for months until something goes wrong”. She was saying this to illustrate how these students ‘coped’ adequately with day to day school life. All I could think was that at my boys’ school the teachers are in constant contact with the boys and things are never left for months until something goes wrong. Although this teacher was trying to be positive and reassuring, I knew then that my son would end up depressed and unhappy in an environment where he could go unnoticed for months at a time.

Why should he simply ‘cope’ when other children thrive? This is not what I wanted for a boy who is incredibly bright with enormous potential but who is also extremely sensitive with sensory issues and problems with social integration. On the face of it, you wouldn’t think there was anything different about him. But it is precisely when ‘things go wrong’ that you see that he is not the same as everyone else and does not have the coping skills that most children his age have.

This is what More House School teaches him. As well as supporting him academically, it supports his social needs on a daily basis and when they see that he is heading for trouble or he becomes upset, they can help him develop the skills he needs so that when he is an adult, difficult situations don’t throw him off-course. This means that when he leaves school to go out into the outside world, he will be as well-equipped as anyone else to deal with all kinds of situations and different types of people.

If we hadn’t managed to get the LEA to agree to fund him, we would have had to pay £13,000 a year for our son to receive the right kind of education to give him the best chance of a successful life. We had tried mainstream and had found that, with the best will in the world, the kind of support he needed wasn’t available. So why should we have to pay for him to get what every other child in mainstream gets without any bother? We didn’t opt out of the state system out of snobbery. We were, in effect, forced out, because our sons were not mainstream children.

Our LEA seems to have woken up to the fact that it is cheaper and easier to pay for children to go to this particular school than it is to find all the support they need within the state system. If they had to make their own school for high-functioning ASD boys, complex dyslexics (who often have co-morbidities), and children with great Occupational Therapy and Speech and Language needs, they would have all the capital costs to pay on top of  the per-pupil cost. These would include buildings and maintenance, electricity and all those other costs that don’t include teachers and support staff salaries and benefits.

Just paying £13,000, and leaving it up to someone else probably seems like a great deal. We haven’t asked them to pay transport – we moved to be closer so I can easily take them myself every day as I would if they were at any school. This is my part of the deal as transport costs are a never-ending headache for LEAs and I see no reason to add to the burden when I am in a position, and more than happy, to take them myself.

However, although Surrey, our LEA, have done the right thing for both my sons, (and three cheers for them), I know of other families who are having to fight tooth and nail and at great expense to get their local authority to do the same. I know of one child in Hampshire, who got a statement with no argument but despite his severe social as well as physical needs, the LEA thinks he will be able to cope with a mainstream placement against ALL the advice they have received. This is pig-headed stupidity and a game of brinkmanship with parents to see who will blink first. There is no logic to it and when the case gets to Tribunal, Hampshire will lose and will have wasted taxpayers money fighting a case that didn’t need to be fought. The family will have suffered emotionally, financially and completely avoidably.

Hampshire have recognised this child’s needs for OT and SLT in part two of his statement and yet have made no provision in part three of the same document and they think this is acceptable. They think it is okay just to dump him in the local secondary where his needs cannot be met (and the family has the documentation to prove it). Hampshire should know that it won’t intimidate this boy’s mum. She is every bit as determined as I was to make sure her son gets the placement he needs. It is appalling that she should have to put herself under considerable strain to do so. I will keep you posted as to what happens.

Rose Dyslexia report – will it be enough?

Government adviser Sir Jim Rose’s report on dyslexia has been widely reported today. BBC News said, “More teachers will be trained to identify and support children in England with dyslexia, as a report says greater expertise is needed in schools. Sir Jim Rose, who recently reviewed the English primary school curriculum, said parents needed guidance on the help available.  The government says 4,000 teachers will be trained, and online courses provided to help them support dyslexic pupils.Charity Dyslexia Action called it a “landmark report” and a “great step forward” to have a definition of dyslexia which those affected could recognise and accept.

boyworkingIn his report, Sir Jim defines dyslexia as a “learning difficulty which primarily affects skills involved in accurate and fluent word-reading and spelling”.  The report will say dyslexia should not be treated as a distinct category of people, but as a continuum, like other disorders. He is also expected to reiterate that good quality teaching in children’s early years is vital.”

The link to the full BBC report is at the bottom of this post but what strikes me is that it has taken this long for a report to be done. Dyslexia is not new and the fact that it is only now being ‘officially’ recognised is a scandal. Whole generations of people have had their lives blighted because they have had unrecognised and untreated dyslexia. Instead, they have been branded ‘thick’ and have not been able to develop the life chances they should have.

I sincerely hope that this report’s recommendations will be acted upon so that teachers can learn not only how to identify children with forms of dyslexia but know how to do something about it. As I have said before, if the government wants ‘inclusion’ then mainstream teachers cannot just teach the mainstream. If teachers don’t have the access to the funding or training to make their teaching truly inclusive, then once a child is recognised as having a problem, they should be given access to teachers that can help them.

Ten million pounds doesn’t actually seem that much to provide all the help that is required, but it is a start and should be recognised as such.

I am no expert, however, I am of the opinion that some children with ‘continuum’ difficulties such as dyslexia and ASD need a different teaching style altogether that can only be delivered in a specialist environment. I have helped various parents with their statementing battles and have seen quite a few Educational Psychology reports. What seems to be a theme is that the working memory and non-verbal skills of these children is almost always poor, sometimes dramatically so, compared to their basic level of intelligence. This means they have difficulty remembering instructions and sequences, problems with attention and with organisation. These are in addition (though connected)  to the problems they have with making sense of reading or writing or both.

This group of issues will be difficult for a teacher with thirty other pupils adequately to address, however much training they have. They are, after all, only one person and are not superhuman, unless there are government plans to provide funding for that too. Isn’t it better that these children learn together and are taught in the way they learn best? It is great that teachers will be trained to spot Dyslexia – they should also be trained to spot and act when they believe a child is on the autistic spectrum as well. But my concerns are that we are simply asking too much of teachers when they have so many children of all varieties to deal with.

The answer could be in smaller class sizes so each child can get individualised learning, or grouping children according to learning styles. In our school, dyslexic, dyspraxic, dyscalculic and Aspergic children learn alongside each other in small groups because their learning styles are more similar and the class sizes are small enough that where differences exist, they can be catered for. Eight children may need things explained eight different ways, but that’s feasible in such a small class. I question whether that’s possible in a class of thirty.

It should be possible in a junior school of children with three-class intake per year to be sensitively placed so that the teacher has a fighting chance of helping everyone. When my younger son was in mainstream, he was made to go into the remedial English group because he had problems writing, even though his reading was top of the whole year. He was angry, frustrated and sometimes had to be dragged to the lesson because he knew he was in the wrong group. Now in his specialist school, he is supported in his areas of difficulties while still doing work that is at the correct level for his intelligence. We had to move him into the independent sector to get this but this kind of teaching should be available to every child whether or not they have the parents who are willing and able to fight battles to get them what they need.

This report looks like a good marker for future practice if the recommendations are acted upon. We await other reports that are ongoing such as the Lamb Inquiry and the other autism bills that are going through parliament to see whether a real difference can be made and the future of another generation of children is not lost to the vagaries of government policy.

BBC report here: http://news.bbc.co.uk/1/hi/education/8109554.stm

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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.

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

ASD child? Are you getting what you’re entitled to?

If you are the parent of a child with an Autistic Spectrum Disorder, you don’t need me to tell you how difficult a ‘normal’ lifestyle can be.

Not only will your child have some level of social and communication difficulties, they may well also need speech and language therapy or regular occupational therapy that unless you pay for privately, you face a long NHS wait (in the UK) or it may not be available at all. Going for days out maybe out of the question because of long queues or simply the stress of facing the world and other people maybe too much.

You may even need to get hold of specialist equipment such as writing slopes, special types of pen or even a laptop that would make your child’s life so much easier but it all costs money.

If your child has a disability that affects their life so that they need more help than an average child of their age, you may be able to claim Disability Living Allowance. It is made up of two components, The Care component and the Mobility component. You can call the DWP for a form, or you can now apply for it online. It’s a tricky form to fill out, because it’s not really set out for children with ASD, but there is advice on the NAS website on how to go about it.

If you are refused, you can call up and ask for a reconsideration of the case if you think what you have said has been misinterpreted, or, failing that, you can appeal. We get the middle rate of care and the lower mobility rate for both our Asperger’s sons, and it’s worth more than £250 a month each. This helps towards the costs of specialist education, which includes OT and SLT that we would otherwise find difficult to afford.

Legoland, thanks to their disability scheme

Legoland, thanks to their disability scheme

If your child has a Statement of Special Educational Needs they may be able to get a laptop or other IT equipment from the LEA. Ask your school to arrange an IT assessment. My younger son has an LEA laptop that he makes really good use of.

If your child qualifies for DLA and you are their main carer, and you don’t earn over £90 a week, you can claim Carer’s Allowance, which is worth around £53 a week. Not a lot, but if their condition prevents you from earning money through working, (eg, you can’t leave them with childminders after school or in holidays because of their condition)  then you also can’t claim job-seeker’s allowance, so every little helps.

If your child gets DLA, you are also eligible for a cinema card. This means that one person/carer accompanying your child to the cinema can get in free. It costs £5.50 and is valid for a year. You get a photocard with the child’s details so it doesn’t have to be the same person taking them each time.

Many children with ASD love going to theme parks, but cannot stand to queue which means that they rarely get to go. However, many theme parks have special passes or stamps which mean you can use the exit as an entrance, thus avoiding the queue altogether. We did this and got around Legoland’s rides so quickly, we were able to leave by 2pm having been on everything and with barely any stress. Other attractions also have reduced rates for the disabled or free entry for carers. Check their websites or call them up before you go.

The above are in addition to the usual child and work related tax credits which are availabe to anyone who qualifies. More information on what you may be able to claim can be found at the Disability Alliance website



Autism Costs UK economy £28 billion

A new study into the economic impact of autism spectrum disorders in the UK has shown that the total estimated cost is £28 billion each year. That averages out at £500 each year for every man, woman and child in the country.

The study, published in this month’s edition of the journal, Autism, includes estimates of the impact on the economy through lost productivity and says that further improvement in earlier intervention should considered and services across government and society in general should be better coordinated.

It combined data on prevalence, level of intellectual disability and place of residence with average annual costs of services and support, together with the opportunity costs of lost productivity. The costs of supporting children with ASDs were estimated to be £2.7 billion each year. For adults, these costs amount to £25 billion each year. The lifetime cost, after discounting, for someone with ASD and intellectual disability is estimated at approximately £1.23 million, and for someone with ASD without intellectual disability is approximately £0.80 million.

The research was carried out at King’s College London, Institute of Psychiatry, and the London School of Economics. Its authors found that, “At a time when the UK government is emphasising the need for higher rates of economic activity, and in particular is
trying to help people with disabilities and long-term conditions move into paid employment, the high costs of lost productivity stand out. Very few people with autism were in employment, which is hardly surprising given that there was little or no support to get them into work.”

The study points out that the figures only show what was spent or lost and not what ought to be spent. Autism advocates feel this figure should be much more, particularly in the area of early intervention and appropriate education. Such help can ameliorate the effects of the disability for many people with ASD, particularly those at the higher functioning end of the spectrum with Asperger’s Syndrome.

While the authors of this study emphasise that the costs presented do not provide an economic case for early intervention, they do highlight the importance of addressing that question. If early intervention could successfully change some aspects of behaviour that are cost-raising, both in childhood and subsequently, it may allow cost savings to be made and quality of life improvements to be achieved.

The research found that the range of sectors on which autism has an impact shows that there is  a need to ensure coordinated action across different parts of government and society more generally. It also said there was a need for a much better understanding of the cost and cost-effectiveness of various interventions and supports for children and adults to ensure that decision makers have a stronger evidence base when deciding how to allocate resources.

Study: Economic Cost of Autism: Martin Knapp, Renée Romeo and Jennifer Beecham, pub,  Autism http://aut.sagepub.com/cgi/content/abstract/13/3/317

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.

SEN Assessment Form Part 2

Further to the earlier blog ‘The SEN Assessment Form – Yikes!’ I thought it might be useful for some people to provide a template to help people get their thoughts down so you’re not facing a blank piece of paper. You can download it below, in MS Word format. If you need it in pdf format, just email info@specialneedsjungle.co.uk and I’ll be happy to send you one.

where-to-start (MS Word doc)

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.

Really good site

If you’re trying to get a statement for your child take a look at this website. Douglas Silas runs a firm of solicitors specialising in SEN tribunals. I didn’t use his services myself, but I did use his large selection of free factsheets and sign up to his emails which proved very useful. I’ve added a link also in the ‘useful links’ section and it’s well worth taking the time to visit his site.

It’s all about the school.

Yesterday, my son was discharged from regular check ups with his nurse practitioner at his specialist clinic, a cause for celebration. She has been a wonderful support to us along the way to getting the best we can for him but now he has started at an appropriate school for his needs, he no longer needs medication to help him focus because there are only nine boys in a class and he is taught in the way he learns best (imagine!).

His nurse said there’s nothing she can now offer that he isn’t getting at school and she’s right; it’s all about the school. A paediatrician at the centre said the same thing: one size doesn’t fit all and the right school can make the difference between a life of underachievement and a fighting chance of success.

What chance does an ASD child, even with TA support, have in a class of thirty (several of whom probably have behavioural difficulties or other issues) when that child has sensory integration problems and needs a quiet environment to be able to put pen to paper at all? What chance for success does a bright child have who reads several years ahead of his age but can barely write, when he’s left to fester in a remedial English group where he refuses to work because he feels his intelligence is being insulted?

This is the conundrum faced by mainstream schools when trying to educate children with complex needs. It’s just not possible to put him in a group with his intellectual peers because he thinks so differently and can’t keep up with writing speed. But putting him in a group with children who write as slowly as he does means he’s frustrated and not challenged. The same is true for many bright dyslexic children; where do you put them if they’re clever enough to be in the ‘top’ stream, but whose reading or writing difficulties mean they can’t present their work as well or whose thought processes don’t follow ‘the norm’?

Can mainstream provide sufficient expertise and support for these children? Politicians pushing the ‘inclusive’ agenda say it is perfectly possible and perhaps in a very few schools that have sufficient specialist staff and resources, this may be the case but for the majority, it just isn’t.

I was told when my son was in mainstream that there were five accepted methods for doing maths at his level. My son had his own, sixth, very complicated method and even though he would get the right answer, I was told he had to conform to one of the methods laid out in the national curriculum. Good luck with that, I thought, because you’ll have a job on your hands.

I have spoken to many highly experienced teachers, special needs Teaching Assistants, Outreach staff and Clinicians in the past few years. NOT A SINGLE ONE believes inclusion for children with complex learning styles or difficulties in the answer. Not one. Why are their views being ignored in the relentless push for everyone to be taught in one setting? Please, if you know, make a comment and enlighten me. It’s possible that I and they are all misguided souls. But somehow, I don’t think so.