Children and Families Bill: letters from the battlefront

A long time ago, in a galaxy far, far away, a Coalition Government decided the SEN system needed reforming. In its Green Paper, 'Support and Aspiration', it noted that "parents tell us that it can feel like a struggle to get the right support for their family from education, health and social care services". It promised a radical new world of harmony: a "new approach to special educational needs and disability".

Back here on Planet Earth, of course, reality bites and we got the Children and Families Bill instead - plus ça change, eh?

© Robert Couse-Baker

Presently, 'high-level' meetings abound. Doubtless, lots of coffee has been drunk, a few croissants may even have been eaten, certainly a great many photos have been taken and there has been much shaking of hands. I can almost hear the sound of power points creaking from overuse as they churn out endless charts and graphs mapping the progress of Pathfinders and the vision of a brave new world where nothing much changes in terms of delivery of provision on the ground.

Charitable consortia appear to be spending significant sums producing multiple guides for 'stakeholders' advising how to implement a Bill which is not yet law. Similarly, plans for implementation by LAs have been publicly set out with scant regard for the fact that there is actually no new law yet to implement (see this gem for example). But when has the duty to respect legal obligations ever got in the way in the SEN world? And anyway, who needs the law in the brave new world of parent/LA harmony? Doesn't it just get in the way of a new era of loving relationships? Like a prenuptial agreement, demands for the legal protection to which children are entitled just seems so unseemly. We are all friends now.

But law has ever been the driver of social change and if the law is not good enough, clear enough or progressive enough, there will be no 'reform' worth talking of. A simple question for all those charities and organisations busy 'preparing' themselves for the 'changes' is: what is your evidence that this Bill will help children and young people?

© Defend_equality_poster.png

The Bill should be about strengthening and embedding children's rights. Children's rights are not optional add-ons. The right to be included, the rights to education and health care, the right to be heard and to be part of the decisions affecting your future, the right to live your life free of discrimination and to have your diversity respected. These are all fundamental human rights which have been included in a plethora of international human rights treaties. They reflect the world we want our children to live in - both in and out of school. These rights should be at the very core of any effective legal system of enabling and empowering children with additional needs.

And that is what the SEN system should be about. It should not be about budgets and managerialism or even about closer cooperation between behemoth bureaucracies (does the idea of vast, unaccountable organisations working more closely together in an un-transparent way sound promising to you?). More effective managerialism and closer working by largely unaccountable public bodies will not lead to improvements on the ground for children and young people. To achieve this, we need to move away from paternalism, we need real and radical change in terms of the end to be achieved (equality for children with additional needs), enforceable legal rights, clearly articulated legal protection and improved access to justice to enforce those rights. Law framed in such a way, with precise objectives and specific mechanisms of enforceability, can drive genuine social change. The Children and Families Bill is simply not this kind of law.

And this matters. It really does. Too many children's lives are being ruined by lack of adequate, evidence-based interventions to support their education. And far too many are being deprived of an education altogether. This is not a marginal issue: it shames our society and bodes ill for the kind of world we want our children to be part of.

Getting back to the original point about the struggle parents face, I can see nothing in the Bill that will make obtaining even basic support any less of a struggle. I'm not talking political rhetoric and networking chatter about 'changing hearts and minds' or 'co-production' or any of the other, non-enforceable mumbo jumbo usually spouted. I'm talking real legal change set out in proper clauses in a Parliamentary Bill. Change that protects and strengthens children's rights. Where is it?

If these reforms do not better protect children's rights and do not reduce the struggles parents face, what is the point of them? This needs to be said. We must stop pretending that endless tinkering with slight changes to this proposed legislation will ever achieve any kind of 'victory'. It all just amounts to some plaintive request for crumbs from the table. Mandela once said, "A people comes to a point in its history where it has two choices. The first is to accept permanent inferiority. The second is to defy the government. We chose to defy the government." Have we not yet reached this point?

The whole reform process is flawed and tainted with vested interests. Far too little is being heard of the genuine voices of parents and children and young people. When parents do share their experiences, they are casually brushed aside with condescending references to how the law should operate, ignoring the reality of how it does not. Yet most of those with experience of the current SEN system know very well what goes on and can surely see how the situation may actually get worse and not better after the introduction of these reforms.

The reality is that parents who want to get proper support for their children too frequently face extreme experiences which are fundamentally damaging to their families and, therefore, to our wider society: problems of marginalisation, of acute stress, of loss of jobs or income, of huge costs, of victimization and brutalisation by a system driven by lack of insight, by a failure to understand the obligations imposed by public law, and by bottom lines and budgets. A system in which too few working in it ever raise their head above the parapet to reflect objectively on the way they do things or on the quality of provision and support they offer. Do they ever ask questions of themselves such as: Do we understand our legal responsibilities? Do we make decisions lawfully? Do we take into account children's rights? Do we understand what those rights are? Is the money we spend well spent? Does it achieve what it is supposed to achieve? How do we know? How can we prove it? Can or should things be done in a different way? In reality, I suspect few ask such questions.

© Moratorium_logo.jpg 

To conclude on the issue of parental struggle, below, in some 'letters from the battle front', are the voices of just a few parents who have had to fight through the system to get the basic support their child needs. Their experiences are shocking yet hidden. Marginalized by a society who would rather not hear about it, these parents are sadly far from unique. If we are not changing this, we are simply wasting all our time and money.

Demand a moratorium now. It's time to stand up for the rights of children and young people.

Parent 1

"I definitely feel that I suffer(ed) PTSD and I don't think that's exaggerating at all. You feel like a civilian who's been dropped into a war zone and told to start fighting - for your child's future.

I still felt very unsettled for a couple of years after my battles were over. I was always expecting victory to be snatched away or for something to go terribly wrong.

And although time does numb the memory of the bad bits that state of enhanced vigilance never really leaves you.  It does make you a very different person."

Parent 2

"My husband had a very PTSD reaction. He was depressed I realise now for quite a while after the Tribunal win. It was the injustice of it, the lies and deceit about a child who needed help desperately. 

There was some research done a while ago by a lawyer who did medical negligence cases which showed that people were more likely to get PTSD as a result of a medical injury than a road traffic accident even if they had similar physical injuries. Its to do with the trust, the fact you trust a doctor and being let down by someone you trust is worse. Often victims needed counselling to get over the loss of trust e.g. some became hospital / doctor phobic, as much as recovering from the actual injury caused. The research shows being let down by the very people who are employed to help you triggers PTSD type responses. 

I feel the distance from other families too. And its not them that has changed or that they are less friendly, its me. I hear their worries about their children and they just sound so trivial. Thats not their fault, I used to worry about trivial things too, now it has to be major to even register on our family richter scale. When one of my sons was diagnosed with diabetes this year was easy, I didn't even cry, I just realised it was something that could be dealt with. There was a clear evidence based plan, accurate prompt advice, endless medical supplies and everyone was nice. I haven't even read a book about diabetes yet. It's nothing like being left for months feeling desperate and helpless and watching your child get worse and no-one expressing a view about anything in case it implies they should spend some money. 

My neuro-typical kids are going to be so resilient as adults. Anything less than catastrophic has become no big deal in our house.

For me its the stress I still find hard to manage. It took months to realise the lengths the LA would go to as it only became apparent bit by bit. So my stress levels went up bit by bit over many months. Whereas now I know what they are capable of so its like I constantly live my life on the edge and the slightest thing they do or even a simple meeting and I am right back at level 10 stress levels, there's no gradual build up. Just constant vigilance ."

 Parent 3

"Yes to the loss of trust, the stress, hyper-vigilance, and to the distance from other families. Yes to resilience of all the children to many things that would bother others, to calm acceptance of most non-catastrophic events, and my own 'war veteran' permanently changed personality.

I suspect many parents in the SEN maze have an even worse experience than that faced by many victims of medical error. Because although the consequences of negligence are devastating, it's usually not done on purpose. Most health disasters are individual level, accidental slips, judgement mistakes, or else due to work-overload exposing various massive flaws in the organisation of a particular department or system. 

NHS cover-ups do happen, large-scale institution failure is not uncommon and some trusts are a disaster waiting to happen... but there's usually another nurse, doctor or physio somewhere to try and patch things up. 

Deliberate withholding of information, dirty tricks, spurious social services referrals, giving misleading reports to other professionals, denial of blatantly obvious problems, unjustified withdrawal of provision and constant, outright, bare-faced lying... this lot seems to be reported almost routinely by SEN parents, particularly if a child is complex and/or has ASD. We even laugh about it. Yet no-one has suggested that even the worst of the scandal-hit NHS trusts routinely treated most patients like this"

 Parent 4

"It's also hard to feel good about a Tribunal victory like this. You haven't won anything. You've achieved baseline, adequate. You've fought so hard for something very basic that until you began fighting you had assumed was a given as the legislation and published documentation implies.

You won't ever forget what you have seen in your war.

I 'won' an election to become a parent governor. I worked hard on my statement and a little canvassing. My 'victory' has not left me shell shocked. It has left me proud of myself and excited. You cannot possibly feel either of these things with your victory as you weren't fighting FOR something good but against something evil."

Parent 5

"My son was left languishing outside the school system after his placement broke down because of his disabilities. Everyone involved with him agreed he needed alternative provision. Yet it took 6 months, an LGO complaint and the threat of judicial review to get the LA to do anything. 

In the meantime, I stopped work. I taught my son myself. We used our savings to employ a tutor for as many hours as we could. And we waited while the LA wrangled with anyone they could to avoid paying for our son's education. In the process, it tried any tactic it could to blame us for our son's lack of education and then the delay despite the unanimous support and agreement of every professional involved, including my son's school. And this is a Pathfinder Champion.

The pressure on our family has been intolerable and we have learnt to focus on what is really important in life but we have seen the underbelly of a system which my solicitor describes as 'not fit for purpose'. 

It feels like my son is nothing but a burden to the education system. Instead of valuing him and supporting him and developing his strengths and talents, he was simply left to rot. Without us, he would have nothing. But who cares? He's only a 'SEN' kid after all. Who would accept this for any other child? 

It seems to me that you stick a 'SEN' label on a child and it's permission to fail to them. Getting our son the educational provision he is entitled to do did not feel like a victory. We were left feeling shell-shocked  and I will never forget what those paid to help us were prepared to do to get out of providing him with an education."

The Children and Families Bill and Merton Mencap Kids First: show us the evidence

©Sam Tiegen

Experience of the SEN system is a call to action for many parents. I know of some who have relentlessly pursued information about the opaque processes of SEN decision-making to try and establish a modicum of the accountability and transparency we have the right to demand of our public bodies. For example, when North Yorkshire started using legal representation a couple of years ago, they came up with all manner of reasoning to justify the move. A parent queried their reasoning with the Ministry of Justice who denied them all. See here. The same parent was also able to obtain an insight into the cost/benefit analysis behind such decisions.

Yesterday, a parent sent me a link to this phenomenal piece of work by Merton Mencap's Kids First Parent Forum. It is a survey on Tribunal outcomes. At last, I thought, a piece of evidence based research about the SEN system. But then I also thought (again): why on earth did it take a relatively small parents' group to undertake this task? 

The DfE doesn't seem to be too concerned about gathering objective evidence about the operation of the SEN system. The reforms in the Children and Families Bill do not have a solid evidence base and Pathfinder pilots don't seem to be the subject of any rigorous empirical research. Indeed, the DfE must be aware that some Pathfinder LAs are not piloting SEN Direct Payments or even letting parents apply for them, in clear contravention of the law. They are also implementing EHCPs which have no legal basis at present and so are unenforceable. Additionally, projects like 'SENDirect' have sprung up out of nowhere as 'brokerages' for a proposed market in SEN provision, seemingly without any evidence base or consultation. How are these 'brokerages' supposed to operate and who will they benefit? Answers on a postcard please.

But, it also made me wonder: why aren't all the big, heavy hitting charities with their campaign, policy and research teams and Government grants producing research like this? Shouldn't they be spear-heading the fight for evidence based policy and law-making against the rhetoric too readily spouted by those driving through these changes? Shouldn't they be making this stand against the Children and Families Bill? Shouldn't they be challenging the potential impact of these reforms? The parents of disabled children are subject to enough stresses and challenges, do they really have undertake research too?

Of course, the starting point for research must be a clear data analysis and a contextual evaluation of parents' experiences. To their great credit, this is precisely what Kids First have achieved.

Kids First Report

Kids First have produced their report because:

The DfE told us that abuse of the Tribunal system by Local Authorities is just hearsay. They quoted the large number of parent withdrawals prior to hearings as evidence of a balanced system.

Sadly, this is similar to the dismissive response we received (here) and this attitude astonishes me. Does the DfE really believe what it is saying in light of all the detailed evidence it must surely have received on this issue? There is also ample evidence of poor practice in previous reports on the SEN system, including the Lamb report and the Report to the House of Commons Select Committee on Education in 2006-7.

Tackling this head on, the Kids First report goes on to say:

We wish to trigger a debate in Parliament about the SEND Tribunal, its shortcomings, and the way in which it severely lets down disabled and SEN children. We believe that there is still time to amend the Children and Families Bill and/or associated regulations in order to bring about an equitable system. 

I wholeheartedly support this call.

The report provides a very useful insight into the use and misuse of the Tribunal system by LAs. It really is worth a detailed read so that the voices of parents and families can truly be heard. Their experiences make grim reading.

Additionally, this report is important because it is based on Tribunal data which, incredibly, is not publicly available: it had to be specifically requested by the group. The data confirm:  29% of appeals lodged were conceded by LAs before the hearing (indicating weak LA cases). Parent withdrawals account for 47%. However, this figure does not take account of the fact that many parent withdrawals occur because Local Authorities concede the main points. Of cases that go to Tribunal, 68% of hearings were lost by LAs (the report concedes that "no doubt some were finely balanced").

The report's conclusions are startling, yet, sadly, unsurprising:

Our contention is that the cases that Local Authorities concede should not reach the appeal stage at all. We know that it is possible to avoid Tribunals in most situations because some Local Authorities do this already. 

Our second contention, based on the survey, is that too many appeals are won by parents. 63% - 73% of all cases are either conceded by Local Authorities, partially conceded, lost at a hearing, or partially lost at a hearing. This means that around 2/3 of all appeals are potentially avoidable. The strain and long term impact of a Tribunal on a family is immense. (See parent comments below in appendix 4). Even those who eventually win their case, normally after years of fighting, are worn down and bitter about the system. We would like to see Government make changes to achieve a more equitable and civilised approach to SEN disputes. Tackling the misuse of Tribunals would be a good start. 

The report makes the following very sensible proposals 

A. We would like the Government to amend the Children and Families Bill or its regulations to place a duty on the DfE to publish the statistics showing Tribunal outcomes by Local Authority and the outcomes of all SEN Tribunals.  

B. We would like the DfE (or Ofsted) to review the statistics each year and investigate the working practices of Local Authorities who fight large numbers of Tribunals. It would help if the First Tier Tribunal could also monitor Local Authority concessions and parent withdrawals in a more robust way.  

C. We would like the DfE to have the power to impose penalties on Local Authorities who regularly concede Tribunal cases very close to a hearing date.  

D. We would like a robust, independent complaints process that will follow up all claims about misconduct against Local Authorities and applies penalties where necessary 

Isn't this precisely the type of struggle the Green Paper promised to remove from the system? The DfE refuses to engage on how the Bill is going to reduce the struggle without improving legal accountability and I don't see those organisations being paid to implement the reforms holding them to account for this.

Instead, in the face of severe budgetary restraint and a Government committed to reducing the costs of 'welfare' (Osborne  stressed recently his belief that we need  an 'affordable' state - I think we know what this means), we have, until very recently, had leading organisations talking only about what lovely choices parents will have with personal budgets - marmite on toast anyone? Now, they are talking of 'broken promises'.

It is surely time to engage fully with what these reforms will mean for all our children, particularly in terms of education. We need those with the ear of Government, those who have been consulting, piloting and implementing reforms, to throw their weight behind campaigns like this and build on them (even if they cannot lead them from the front). We need to challenge Government indifference to such fundamental issues as the right of a child to have their needs met.

Reform needs evidence and we need action

We need evidence based policy and law-making. Our children deserve nothing less.

Law based on rhetoric and driven by political ideology about who is 'deserving' of state support will inevitably lead to children and young people finding themselves without the services they require. And without the legal means to protect their rights.

Some herald these reforms as introducing a new era of harmony between LAs and parents. But where is the evidence for such grand assertions? The law, as it currently stands, is frequently ignored or side-stepped and children's legal rights often seem entirely unenforceable. How on earth will this suddenly change in practice with the Children and Families Bill? Isn't it all about the money?

The reality is that these reforms may mean that far fewer children are granted legally protected provision and far more are 'dumped' on schools with their needs to be met solely from school resources. This is extremely worrying as it is clear that many schools, who are committed to inclusion, are really struggling with Government changes to the funding regulations already (see this Guardian article - well done to IPSEA for highlighting this issue).

One parent has told me this:

Our LA is going down the resource allocation system route - which is ridiculous and completely against the whole concept of the Plan which will be individual: how can the Plan be individual if you are being stuck in a band due to being allocated points? It doesn't work for adults, it's just cost cutting.

And we were told at Annual Review that 'statements won't come with hours anymore it will be all about outcomes' like the two are mutually exclusive. You can tell they all sit in the same meetings sharing the same mantra. Of course there will still be Plans with hours in them. How can they plan a personal budget or pay a private provider other than agree to fund so many hours at so many pounds? I think they meant mainstream school statements wont specify hours only outcomes for school to deliver - so leaving school to decide how many hours to provide. This suggests there will be a whole new wave of litigation to re-establish existing principles.

Another parent said on twitter recently:

 My LA already talking about the most 'severe' SEN. Saying schools will have to do more

This in itself makes the Bill something which should be attracting the attention of all education commentators and children's charities because it will affect all schools and all children. Presently, we risk sleep-walking into a nightmare of cuts to SEN budgets and the 'marketisation' of SEN provision sold to us under the guise of 'joint working' and 'cooperation'. This is not just about education. Many children can only access the health provision they need e.g. speech and language therapy if it is on a statement. This will potentially impact on children's access to services across the board.

Unions, school Governors, charities, parent groups, education commentators, disability activists and politicians need to start thinking about how this really will play out in the face of this simple reality: there is no money. 

So what will happen?

• In practice, will LAs make the threshold for EHCPs dramatically higher than that for SEN statements, excluding thousands of children from legally enforceable provision?
• Will LAs cease some children's statements, leaving them at the mercy of school resources on the grounds that schools have enough funding? This SENCO suggests this is happening already. How widespread is this? Such practices will affect all children and not just 'SEN kids'. The groundwork for this is surely being laid with the un-evidenced suggestions that children's problems at school are as much about poor teaching and bad behaviour as SEN -see 'Be on your best behaviour for Mr Timpson'.
• What will 'joint commissioning' and 'joint working' between LAs and NHS services really mean?Will it result in fixed agreements about what type of children will get help and in what way? This sort of 'blanket policy' approach would be unlawful.
• Will we have competitive tendering for SEN provision? The charities piloting SENDirect should address this openly. LAs clearly don't want direct payments for SEN so I can only see this working if NHS block contracts are replaced by cheaper contracts with the private sector. Who benefits from this?

Some of this may already be underway. One parent told me:

The outsourcing of services to private consortia is already going ahead. Last year, we were invited to a consultation on changing the way that paediatric SALT and OT are run, in our County. I say "invited" - I wouldn't have known if it wasn't for a tweet by a local BBC journo. Unable to attend the meeting, I completed the online questionnaire. There was no question asking 'should these services remain within the NHS?' The questionnaire was already biased towards these services being privatised. Even at "consultation" phase, it was already pretty much a done deal, no doubt with a provider already having been courted. Health authorities have been told that they have to do this with a certain percentage of services.

Another parent pointed out Devon's Integrated Children's Services to me. These services are already run by Virgin Care.

In the South East, another parent confirmed similar developments:

Today, I was told that children's services have been outsourced to Virgin. As of now, the 'chief' health visitor was unsure how to word a referral for a toddler (16 months) who is delayed in some areas of development (lack of speech, no imitation, currently fails the MCHAT) and has an older sibling with severe autism. She is fairly sure that the referral will get rejected, but time will tell. (she is totally pro-active, and will keep pushing the referral; her problem is she doesn't know how to get a child that she agrees shoudl be looked at a little more closely, onto a waiting list)

It is deeply regretful that we should be at this late stage in the legislative process and have so many unanswered questions but it is not too late to act.

Demand a moratorium. Demand reassurances there will be no cuts to SEN services. Demand an evidence base for these reforms.

The last word

As always, I will leave the last word to a parent because we are the evidence and our voices deserve to be heard. This story is sadly representative of the battles many have faced. Battles which some parents are simply unable to fight and which, I fear, this Bill will do nothing to change:

I appealed to SEN tribunal over Parts 2, 3 and 4 of my son's statement.  My LA refused to provide SLT and OT in Part 3 of my son's statement. The NHS SLT agreed he had difficulties but insisted he didn't need any help that school could not provide, and the NHS OT admitted he needed help, but that she does not specify or quantify the amount because it would upset the LA. So I had to spend ££££ getting independent reports to describe, specify and quantify the support he needed.

The LA ignored the independent reports and the school head teacher told me that she'd been advised by the education officer that they didn't take private reports into account.

© Zen Sutherland

The LAs response to my grounds of Appeal were "we can't respond because we didn't receive an attachment (which had been sent and could easily have been re-sent)". When required to name witnesses, not one was named, instead "to be confirmed" was entered in the forms.

The date for final evidence passed without any evidence from the LA. I made an application to tribunal for the LA to name a school, and Part 4 was agreed. They would still not agree to Parts 2 and 3.

However, just one week before the hearing, the LA agreed to my whole appeal. I withdrew because it would have cost £0000s in fees if I had applied for a tribunal order which takes at least 10 days to come through.

My experience shows that LAs defend appeals when they are indefensible, drawing out cases and delaying support. 

I am aware my withdrawal may be misconstrued, and this demonstrates how important it is for statistics to record the reason for withdrawing.

I would add that, after all this expense and stress, my LA are now refusing to provide the therapy in Part 3 of my child's statement - the therapy I have fought so hard to obtain. This means my child is still being failed and that I am now being forced to consider starting judicial review proceedings with all the additional costs and distress this entails.

It never ends.

Be on your best behaviour for Mr Timpson

Copyright Lovro Rumiha

Just recently, Edward Timpson, Children’s Minister, spoke to the Young Minds BOND National Conference about mental health services for young people.

All well and good, you might think. Until you come across this rather alarming statement:

"We think a pupil’s behaviour, for example, should be placed in its proper context. 

All children go through patches of bad behaviour, and all teachers know that life at home can show up in behaviour or results in the classroom.

Now there are a range of ways to tackle that. It doesn’t help if children who are behaving badly to be automatically treated as having SEN. Indeed, that approach can sometimes prevent schools from recognising underlying issues properly and mean that children don’t get the support they really need. We want to change that."

Mmm, how many of us have children with 'bad behaviour'? Or, rather, how many of us have children with disabilities which leave them struggling to cope in mainstream classes without proper support and who, far too readily, get labelled 'naughty' because, well, it's just easier that way?

How many parents already have to battle through the 'blame the parent' jungle to get proper support because, well, it's just cheaper that way?

And we have, I am sure, all experienced schools rushing to provide SEN support to our children rather than punish them. So there must be heaps of evidence to support Mr Timpson's contentions. Do please share it with us Mr Timpson.

So a parent far wiser than me has provided an amended version:

"We think a child's behaviour, for example, should be placed in its proper context.

All children go through patches of bad behaviour, and all parents of children with SEN know that life at school can show up in behaviour at home.

Now there are a range of ways to tackle that. It doesn’t help if children who are behaving badly to be automatically treated as having no SEN. Indeed, that approach can sometimes prevent schools from recognising underlying issues properly and mean that children don’t get the support they really need. We want to change that."

Now doesn't that read better?

Interesting views of the NUT on Parents and SEN Direct Payments

I thought the July 2013 briefing by the NUT on the Children and Families Bill made interesting reading, especially in relation to its concerns about parents's ability to:

• cope with SEN direct payments and...er...
• do what is best for our child

Read on........



"Clause 49, as presently drafted, gives the parent a statutory right to require the local authority to prepare a personal budget and make direct payments even in circumstances where the school does not want this or where it would not be justified in terms of efficiency or economy. It is not to disparage the vital contribution that parents make to recognise that there will be occasions when their wishes would not necessarily be the best for their own children or reasonable in the context of an efficient and cost effective system for all children.

There is concern that the introduction of direct payments could lead to services disappearing because the funding will not be secure as it will not be possible to predict which services parents will buy into. The options which parents have will reduce - because lack of financial viability will mean the range of services will decrease. Services for low incidence SEN will particularly be put at risk. Instead of promising parents greater ‘choice’ and raising parental expectations, the Government should focus on the actual barriers which parents face and the factors identified by the Lamb Review into parental confidence which have not been addressed.

The concept of direct payments has been trialled under the SEN Green Paper Pathfinders. In the statutory regulations which enabled this, head teachers were given the ability to exercise professional judgement over whether students or parents could use personal budgets in relation to their school. This was sensible and demonstrated respect for professional expertise and judgement.

Initially teachers were concerned about these proposals which seem to question their professional judgement and the value of their many years of education and training. In evidence to the NUT , 65% of SENCOs opposed allowing parents to control funding for SEN provision.

‘I support parental choice and agree there should be some flexibility in the use of funding, but I am concerned about the quality and appropriateness of many alternative educational provisions which parents might buy and what systems would be in place to audit the use of delegated funding.’

‘Parents can have very differing views from the school and although some would correctly employ the use of funding others may not see the significance of certain resources towards supporting the needs of the child in the school. As a school we already ask for parent’s views and ideas but shared responsibility could cause more issues than it is worth’

The latest report of the DfE commissioned evaluation of the SEND pathfinder programme was published this month, June 2013 and highlights concerns from the parent/carer point of view. The report states that parents/carers “were often more interested in the personalisation of service provision, and less concerned about whether they had responsibility for managing the payment of the support through a direct payment.”

The report found that families perceived the management of budgets, and especially employing personal or teaching assistants as complicated, stressful and time consuming and felt more comfortable having the money managed by the local authority or a third party rather than managing it themselves.

Where parents found direct payments more helpful was in relation to home to school transport. These were also easier to manage largely because this funding stream was more easily disaggregated to an individual level."

Full paper here.

Children and Families Bill: a Senco speaks

I posted recently about my concerns about the Children and Families Bill and what it is going to mean in practice for our children.

©http://www.flickr.com/photos/howardlake/

These are not idle or theoretical concerns. The Bill brings the hope of greater parental choice over SEN provision which is very welcome. However, its promise is made in an unchanging administrative context of severe financial constraint and widespread disregard for the law on the part of some LAs. My concern is that LAs will recognise fewer children as having needs which warrant one of the new Education and Health Care Plans (EHCPs) and that children applying post the implementation of the Act, who may well have had statements previously, will now be told to look to school to have their needs met - all out of already pressurized school budgets. This affects ALL schools.

I am also concerned that it appears the Government, its auditors Mott MacDonald and LAs are vigorously pursuing the piloting of EHCPs for September 2013. Where is the law which permits this? The Education Act 1996 has not been amended as it was to allow for the piloting of SEN DPs. The charities involved don't appear to have questioned it. The result will be that, even if optional, EHCPs are, at this stage, unrecognised in law because they are not statements as required by the Education Act.

Of course, without a statement, a child's needs will not be legally protected and the provision s/he needs will not be enforceable. They will be no better off than if they were on SA+.

The problem with this is, as we know, that delegated funding to schools for SEN (which is what non-statemented children rely on) is not ring-fenced and can be spent on anything the school chooses. Further, schools' duty to support the child is only one to make their 'best endeavours'.

This Bill, and current Pathfinder practice, doesn't just need a few tweaks: it requires a wholesale rethink to enable it to address the realities of the SEN world. 

I am starting to conclude that its primary intention is in fact to reduce SEN costs. This week, my fears in that regard grew further when an experienced and very committed SENCO shared her thoughts with me about the impending changes and what it is already doing to practice on the ground. She says:

“When I recommended two statements continue in their current form at two recent Annual Reviews the LA decided at the panel meeting to cease them because the funding for support is now in schools for children who require less than 20 hours 1:1 TA time. We are not a Pathfinder authority. We have been told that there will be no more statements after April 2014 and that the Government want only 1.6% of children with the new EHCPs. This is what our LA have advised us.

So, presently, although the law has not changed, our LA is refusing to issue any statements they don’t think will convert to EHCPs (so must have an educational AND health component) and are ceasing all statements under 20 hours. Schools have to deal in-house with children they would normally have recommended for up to 15 hours statementing support because we have the (very notional ) funding to supply it. It’s a very large step back in time and it’s all about saving money.

The authorities we border with have continued the statements. Parents are confused as they have been told nothing. The changes are being rushed through with no proper foundation and despite the failure of Pathfinder authorities even with an 18 month extension to find a path.

The worrying thing is that saying schools have the cash means there is now no legally enforceable right to provision for these children. Also, this affects children who can’t get a place in a special school without a statement

As a SENCO the weight on my shoulders has reached new levels. Now I have to decide how much support to give where the LA used to assess and then put their wise heads together to make the decision. And I am an experienced teacher and SENCO. What decisions will all the new younger SENCOs still gaining experience make? Apparently this was what SENCOs said they wanted from the government consultation...I certainly did not."

 I am really grateful to this teacher for speaking out like this because what is being said is deeply   concerning and needs to be put to the Government for comment. Please contact me if you have been provided with similar advice in your LA area.

NB: The only valid reason for removing a statement is that the child no longer needs it. If any council is removing them solely because of an internal policy, that is illegal and could be challenged through the courts. A case could probably be brought in the name of the child so legal aid may be available

The 'Team (getting) around (their duties to) the child'

Aah, 'multi-agency working',  'joined up working', the 'Team around the Child' etc etc.

It all sounds so good and promises so much. A whole TEAM around YOUR child, dedicated to working together to improve actual, measurable outcomes for them. Fantastic.

I am sure there are many cases where this happens, but, if we don't acknowledge the fact that, for many parents, endless multi-disciplinary meetings lead to little in terms of actual benefit to their child, we deprive them of a voice and credit many children with a benefit they are not actually receiving. 

Here is one parent's story:

"I remember by first multi-agency ‘Team around the Child’ meeting. I was there, humble, hopeful, scared, on the verge of tears, desperate. It sounded wonderful though.  This person was going to 'advise', that person was going to 'refer', another person was going to 'monitor' and another going to 'send your son's case to a 'panel'', and someone else was going to send his case to a 'board'. Yet another person was going to put together a 'programme' and someone else was going to 'assess'. We were going to get 'support' and my son was to get 'therapy'. Someone else was going to 'investigate' the 'opportunities' that our LEA had for children such as my son, and someone else was going to 'liaise' with us.

A couple of months later and I realised that some if not ALL of the above was happening in terms of moving funds and delegating money to people's case-loads, but yet not one single OUTCOME had occurred for my son.

In fact we hardly saw anyone, they were all busy referring, and investigating and writing programmes or whatever. I hung around here a bit complaining and apologising and thinking ' Oh, he's only little, we have lots of time'. But a short while later I realised that it was good as it was ever going to get unless I started to demand better. 

Against my nature, my upbringing and my previously held beliefs I began to challenge the provision and the system and what I began to see shocked me to the core.

There are a lot of busy people, defending their paperwork and their meetings and shuffling money around, perhaps making speeches over Christmas dinner about their virtuousness. They are incredulous at the very idea you challenge their commitment to your child, yet the extent of their role seems to be simply to 'manage' them and their families through the education system for as cheap as possible.

There is no commitment to the role of these children in society as an adult, like there is with non-disabled children."

Too often, parents demanding evidence of outcomes for 'interventions' are seen as 'challenging', 'difficult' or even 'vexatious'. Why? We demand this every day in our school system for every child, in league tables and SATs etc etc. Ofsted demands it: the Government demands it. 

It is the very least our children deserve.

Meeting needs or protecting funds?

A parent recently sent me this account of the process of identifying her son’s needs which I think is, sadly, shared by many. The process described doesn’t bear any relation to that required by the Education Act. Will this change with the Children and Families Bill? I have yet to hear the Government, or any group involved in the reform process, point to one concrete proposal which will prevent these types of practices.

There is much said about the need to change ‘cultures’ in the SEN system. But how will the Bill actually do this? The law is already clear about what should happen, it just isn't always followed. This 'culture' does not arise because of the personal preference of individuals in the system: it is about saving money.

So, will the reforms provide LAs with lots more money to support the needs of children with SEN? 

I'm guessing NO.Perhaps we need to be honest about that as not only are we failing children if we aren't, but it doesn't benefit those doing their level best within extraordinarily tight budgets to pretend it's just about a culture shift.

The parent tells me:

“This is a link to the College of Occupational therapists [COT] and a report they produced into Dyspraxia.   

Although this report is from 2003 it makes very interesting reading and nothing appears to have changed since this report was made.  It shows how important the COT considers DCD [ie Dyspraxia], and the poor outcomes for children with this difficulty if they are not supported or provided with therapy.

In our own service I found that although we were referred to the OT for assessment, that it took 2 years before we were seen.  That was because of how the NHS OT service prioritised children, and those with DCD were always being bumped to the bottom of the list by children with needs considered to be more severe. 

©http://www.flickr.com/photos/mysight/

When my son was finally seen and assessed he was not given a formal diagnosis.  I was told he had motor co-ordination difficulties.  He received no 1:1 OT therapy at all.  The OT service did eventually give me a list of 'exercises' to do at home with him.  However this was too little and too late because by then he had already refused school and I personally think he had had some sort of breakdown.

It was the CAHMS Psychiatrist who asked him to do some simple movements and stated in her report that he had dyspraxic tendencies.

None of these difficulties had been included in his Statement.  And at that time I was just becoming more aware of the fact that each and every need should be included in the Statement etc.

So I wrote to his OT asking her to clarify if "Co-ordination Difficulties" actually meant "Dyspraxia" and asking her to confirm the diagnosis made by the CAHMS Psychiatrist.  I also asked for details of what 1:1 therapy he would receive for Dyspraxia.

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I received a letter back from the OT confirming Dyspraxia.  She then informed me that the NHS did not fund OT therapy for Dyspraxia and therefore he would not receive any 1:1 therapy.

Again I used the COT report, and the letter from the OT to prove that his needs had not been identified.  Even though every professional involved actually knew he had it and knew it was not in the Statement and knew that his needs were not being met [the same applies for his eventual diagnosis of Dyslexia and Sensory Processing Disorder].

All I can conclude is that needs were not being identified or diagnosed due to the funding implications of them”