If you read our guest post a week ago from Jane McConnell of IPSEA about her "Red Lights" in the draft Code of Practice, you will have noticed a section on Mental Capacity. We're going to look at this a bit today because I'm feeling a little ticked off.
The Children & Families Act was passed last month, but as Jane explained in her post, Part Three is only the "skeleton of a new legal framework", to support children and young people with SEN to get the education they need. The flesh, the nervous system and circulation needed to make the skeleton 'come to life' is contained within the Regulations and the Code of Practice, the latest versions of which still haven't yet emerged from the 'secret laboratory' of the Department for Education.
The first draft Code, described as 'not fit for purpose' by IPSEA, is being revised from feedback gathered during the public consultation that closed last December and, since then, from additional meetings with various organisations (including IPSEA). The new version is considerably overdue in being published, but if it's late because those bright young things at the DfE are making it as good as it can be, carefully amending to include all this high quality feedback, then that's fine with me.
Better late and excellent, surely, than a hastily cobbled together version being tossed out of the DfE by embarrassed officials, running to take cover in their Sanctuary Buildings HQ, from the hoards of angry parents who feel they've played their part and, in the final analysis, haven't been listened to.
The stakes are so high for families that a rubbish Code of Practice would lead to parents metaphorically (or maybe literally!) chasing the Minister, Edward Timpson, down Whitehall with burning copies of the Code skewered on pitchforks.
Who speaks for my autistic son? Not me, apparently
One issue that may well bring thoroughly reasonable parents (like me) to the point of incandescent rage is if it takes away my right to advocate for my teenage autistic son.
To recap, the Children and Families Act 2014 transfers parental rights to young people at the age of 16. Parents will no longer have an automatic right to be involved in decision-making about their child or be able to challenge decisions made by an LA through the SEND tribunal.
Just the very idea of this shows that whoever came up with this piece of idiocy has a complete lack of understanding of high functioning young people with conditions such as Aspergers, like my sons.
In a world where any child is the responsibility of their parents until they hit 18, let alone one with special needs, it is stupid beyond words to allow a local authority to exclude a parent from any decision-making role for their child. Are you kidding?
*I would really, really like your views in the comments please on this - it really matters*
For those young people whose level of functioning clearly reflects a lack of capacity as defined by the Mental Capacity Act 2005, the draft regulations do now make it clearer that their parents or a formally appointed adult representative, must be involved in decisions. However, as Jane pointed out, some parts of the Act are, "Likely to make it very difficult for adults to protect competent young people from their own immature decisions."
But as it stands, for those deemed by ... er.. someone... to be able to make their own decisions, the Act will mean they must be consulted, in place of their parents, and make their own decisions regarding their educational support. (*?!WTF?!!*)
This includes the right to bring tribunal appeals. Of course, we all know our young people are just itching to stop playing X-Box and fill in a long document for an appeal, with reference to all the supporting evidence, because they completely understand their local authority has effectively chucked them in the landfill of life chances, while they were busy happily building a brave new Minecraft world.
In its present state, there is far too much room in the CoP for confusion over the subjective nature of exactly which 16 and 17 year olds are "mentally capable" of making their own vitally important decisions, without their parents being involved. And without their parents or carers present, this leaves them open to the possibility of being unfavourably influenced by the other adults in the equation - the professionals, employed by the body holding the purse strings.
Take my sons for example. Both are very bright and the eldest, at 16, would certainly seem at first glance, to be quite capable of making a decision or two. In fact, his entire social needs, the reason he has a statement in the first place and is at a specialist school, stem from the fact that he has autism and ADHD and is known for impulsive behaviour, difficulty in seeing others' points of view and an unwillingness to change his opinion even if it is blatantly obvious it's wrong.
Unless you know him well, as we and his school do, you wouldn't know there is anything different about him, because he has used his intelligence to learn skills to fit in. However, in a stressful situation, he will default back to his comfort zone, as many of us not on the spectrum do too. But his 'default comfort zone' for decision making is deep within the rainbow of autism. One day he will, quite possibly, learn skills to not do this. But he's 16 and taking his GCSEs for heaven's sake - isn't that enough decision-making for any teenager, let alone one with autism?
This is the highly intelligent young man who thinks it's a good choice to start loudly playing the electric piano at midnight. Or take this recent decision, below on where and how to stack my newly arrived boxes of glassware.
On top of this, who is it that decides whether my child, whom I have known all his life, is capable of making a well-considered, important decision about his support without his mum there? Nothing was included in the public draft of the Code as criteria for adequate mental capacity or who should apply it and how.
This makes him extremely vulnerable in a situation where the only adults present do not necessarily have his best interests at heart, because they're more concerned with balancing their department's budget.
To quote from Jane's post:
Guidance in the Code should make very clear that parents should automatically be presumed to be the advocate for their child if it is established that they do not have mental capacity to make decisions for themselves. In any event, it should be made clear that parents should always be central to decision-making, be kept informed by LAs and their views given due regard. Only in exceptional circumstances should they not be involved in the process and their views not take precedence over professional views.
Of course, in the 'new way of working', local authority and NHS staff involved with organising and delivering help for these young people will have been "gently coaxed" out of their old resource-centred ways to emerge, like a butterfly from a chrysalis, with a pure mission to co-produce with the child
and family at the heart of the process.*
The potential for conflict created between LAs, schools/ post 16 institutions, parents and young people between the age of 16 to 18 years old is very high. The Code needs to provide clear guidance on what should happen to avoid this for children and their families during these two years. ....Jane McConnell, IPSEA
I'm not a lawyer and it needed to be highlighted to me by Jane, how this will affect not only children like mine but how greater clarity is also needed for parents of those young people aged 18-25 who definitely cannot make their own decisions.
Because of complex issues like this, parents rely on organisations like IPSEA to unravel it for us and then it is up to us to act and make our voices heard.
However, as Jane said...
Unfortunately there has not been a public consultation on the Mental Capacity Regulations or the new wording proposed for the Code.
...and so we have not had a chance to do this. So this is me, saying, er, excuse me, I would like to be heard please. I'm sure I am not alone.
I don't think the DfE has done this deliberately. I do, actually, think they want to do the right thing, but when you make things up as you go along, as has happened with the Code of Practice, there is quite likely to be a bit of a muddle at times. It just so happens that this muddle is vital to get right.
And one last question, something that has puzzled me for a long time: When the Code was being written - not consulted on, but actually written - would it not have made sense to have had someone like (SEN parent & barrister) Jane McConnell or an IPSEA lawyer representing the parental view at the table too?** If they had been involved in the actual drafting process itself, perhaps it might have produced a better document in the first place. This is what is really meant by co-production, not what has actually happened, which is consultation. Is it too cheeky to please ask the government to start practicing what it preaches?
But I want to know what you think - should you be consulted on this point?
*I do know some LA professionals who do this naturally and whom I admire greatly, esp. Julie Pointer of Surrey's Transition service.
** I happily stand to be corrected on this point.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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