Friday, 20 December 2013

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 ├ža 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."