My son must make his own SEN decisions? Are you kidding?

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.

pitchfork burning

  • Become an SNJ Squad patron
  • Books SNJ recommends
  • buy the webinar

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.

boxes

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?

Just sayin'...

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.

Follow

Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two young adults with autism. Tania is a member of the Whole School SEND Expert Reference Group for SEND Leadership, the Ofsted SEND Inspections Stakeholders Group, and sits on the Advisory Board of the Royal Holloway, University of London Centre of Gene and Cell Therapy.
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.
Tania Tirraoro
Follow
Please Login to comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.

  Subscribe  
Notify of

Oh my word! This reminds me of the difficulty, at the other end of life, of getting help while protecting the dignity of one’s elderly relatives. I sat in a (frankly ridiculous) interview last year while my mother-in-law, a formal social worker herself, gave an Oscar-winning performance of a woman able to cope in her own home, despite the fact that she had no idea where she had been that morning, what she’d just had for breakfast, whether or not she had difficulty remembering to take her tablets (she wouldn’t even have known to take them if I hadn’t been… Read more »

Karen Johnson

Well, it ‘s much cheaper for the government if they let teenagers make decisions. We pushy parents tend to demand that mhs services actually help our children, while teenagers are much less likely to demand appropriate services.

vaguest

Absolutely terrifying. My son turns 16 in October, at which time we will be looking at his transition to college/6th form. I know he wants to stay where he is, but I also know that he is totally unable to make decisions when faced with more difficult choices. A simple example, for his GCSEs he had to choose between DT and Food Tech for one of his options. He was totally unable to do so – he said that not only could he not choose, he simply could not imagine not doing both. There was no decision that he could… Read more »

Jayne Dillon

This is outrageous. My eldest son has AS, he has attended university where the tutors liaised fully with me as he was unable to do so – they understood the implications of ASC. It is also important to remember that often young people on the autism spectrum will employ avoidance tactics when they find something difficult/stressful. My eldest son is extremely sensible and wanted me to advocate for him – he is 20+ and I still attend medical appointments as he knows he doesn’t always understand or needs me to be assertive for him. However, my youngest son is also… Read more »

Tracey Harrison

Just an example from a friend of mine, whose son has HFA and is something of a maths and computer whizz. He is approaching 16 and has demanded that his PIP be paid into his account. From the point of view of an assessor who does not know him, he is bright, articulate and his numeracy skills exceed most adults’ ability. Yet as my friend tried to explain to the assessor, if he sees a piece of computer equipment that he ‘must have’ he will just spend the whole month’s PIP on it, leaving him no cash for transport to… Read more »

This is likely to make extremely difficult decisions almost impossible. I am one of the ‘lucky’ ones because there was never any doubt that my son had to have all major decisions made on his behalf. Young people at the best of times often tend to ‘shoot from the hip’ based on sometimes their very limited life experience and at this age where they would benefit from advice from their parents and others of course that’s the last thing they want. More able young people certainly have every right to have a voice and express their view and preferences but… Read more »

This is terrifying. Natty, who has Down’s syndrome, will always need my advice, support and advocacy. Why indeed weren’t parents like Jane McConnell or Jane Raca, legal eagles and parent campaigners, involved in the writing of the Bill? I guess that would have been too obvious…

Trish Kindelan

My son has Asperger’s and unfortunately was never statemented. He has chronic social disabilites, and was medicated at age 8 due to severe impulse control problems. At age 14, I queried the dosage, as he was becoming more truculent and belligerent, and refusing to go to school, etc. His psychiatrist decided to change his meds, but he had to be weaned off. When we returned to discuss medication, the psychiatrist asked him (age 14 remember), if he wanted medication. Of course, as he thought he was different, and didn’t want to be seen as different, he said no. After that,… Read more »

aftjae

This is just non-sensical and another example of parents not being listened to which can have tragic consequences. Please see the campaign for Connor Sparrowhawk known as LB (Laughing Boy) on Twitter #JusticeforLB and his mother’s blog http://mydaftlife.wordpress.com to see more support for parents to be involved in their dude’s care and decision-making and issues around choice. There is widespread criticism and anger on social media about issues of choice and parental involvement. Sara’s son had autisitc traits and epilepsy and drowned in the bath in an NHS treatment and assessment unit. There were major issues prior to Connor’s death… Read more »

Barbara

Our Son has PMLD and we applied to be his deputy for health and welfare and property and affairs because we realised there might be problems. You can do it through a solicitor costing around £2,000 or you can do the forms yourself and only pay the £400 court costs. Visit Court of Protection website and all the forms can be downloaded there.Also gives you idea what to apply for given your circumstance. We are now legally appointed by the court to make all decisions for our 17 year old son. We have joint and several deputyship so either of… Read more »

TSF

My son overheard me discussing this with my husband and said “well, if it’s my choice they can get lost” referring to our LA…. and whilst sometimes feel the same way, I know it’s not a choice to be made in reality no matter how much insensitive ‘experts’, uncaring ‘professionals’ and ineffective ‘advocates’ we encounter on his behalf. He needs, requires and deserves help … and we are the ones to ensure he has it! He is our primary concern. Perhaps the intention is that such young people DO say no…. now that would be a real cost saver in… Read more »

Rosalind-therapy

Parents attending our recent meeting about the SEN changes were very worried about all of the above. Yes, of course children’s views are important and nobody would want to leave them out. But they should not be paramount.

SEND Essentials

Agreeing with huge parent concern above, especially the comment that Gov should practice what it oreaches in terms of involved, co-production, I also add a slightly diff perspective to govmt approach: How come employers are required by law to inform parents of all young people (16-18) about risks in the workplace, and adopt different standards around pay, breaks, night work etc,etc,etc for all of this group, while seeking to turn our young people with additional ed needs into fully capable decision makers devoid of teenage urges to sit about all week avouding work, responsibilty and decision making?? Get off the… Read more »

Andrea Thomas

Yeah… and what about those kids whose learning disabilities are so severe that they don’t even know they have SEN, or indeed what this is! Those who cannot speak, read, write or communicate in any way. What planet are these people on

Jane Mc. , IPSEA

A quick update. When asked at a meeting yesterday a member of the team at DfE said that they had fulfilled their obligations to consult on the Mental Capacity Regulation & Code of Practice under the cabinet office rules? We have not checked this out yet but obviously will. Mental Capacity effects children, young people, parents, schools/ post 16 colleges, LAs. The views of all of these groups need to have been considered. Essential questions are: 1. Who makes the decision if a young person has capacity to make a particular decision – parents, school/ post 16 college, LA? 2.… Read more »

StephsTwoGirls

It is ridiculous to be handing over control to any 16 year old, never mind ones who don’t have the same level of understanding as typically-developing children. Life experience counts for so much. Even at the age of 18 some children will make the wrong decisions, but 18 would have been a better age to go for in my opinion. I didn’t see any consultation on this, and I can’t imagine any parents would be agreeing with it. Even if all children did want the agreed age to be 16 (which clearly isn’t the case as several have pointed out),… Read more »

Graham Manfield

Last year the Home Office amended the Code of Practice governing police detention to include 17 year olds within the definition of juveniles. This means that they now need an ‘appropriate adult’ to make sure they understand what is going on and help them to communicate with police etc. This only came about as a result of a judicial review (http://www.howardleague.org/17-year-olds-in-police-custody0/) after years of delay and prevarication by the Home Office. That judgement revolved around what was in the best interest of the 17 year old (as a child), even when “many 17 year olds do not believe they need… Read more »

Amanda

Yes, brilliant piece. Really, really clear at highlighting the problems with the post 16 decision making process. Giving our young people a voice will be used as a fig leaf for diluting provision and forcing young people who may be gullible, impulsive and less able to understand the big picture to accept provision could be unsuitable. All parents-carers at our packed parent-carers forum on the SEN reforms last week were really, really worried about this. Well done for making it so clear

Emma Whitield

Tania – another great piece. The whole question of ‘mental capacity’ is a such a thorny issue: there seems to be no understanding that people with average IQ or above can have SEVERE impairments when it comes to planning, organisation or decision-making. It turns out my son has above average IQ, but this has only finally been captured for the first time this year as his language disorder and auditory processing are so poor that historically professionals always thought he was cognitively impaired. Once he turns 16 this year, he has a very clear idea of what he wants to… Read more »

Lee

It ties in nicely with the DLA/PiP’s ability to give our kids their money direct at 16. Because of course kids at 16 with Aspergers are quite able to handle large sums of money in the same way they are quite able to manage their own educational affairs (tongue firmly in cheek).

The idea that families are suddenly cut off like this is very troubling and risks exposing children like my son to bad practice and exploitation in my opinion. There may well be competent professionals out there but they will not have the 16 years experience of my son as I do. They will not know how his anxiety affects him or what the triggers are for meltdowns. They will now know whether his verbal responses are reliable or not. (My son will often say ‘yes’ or ‘no’ impulsively or to shut a professional up because he can’t cope with too… Read more »

As the parent of two (now adult) boys who both had some element of learning difficulties although in neither case sufficiently serious to get a statement I am really worried about this. Both my sons had high IQs and both (on a good day) would seem more than capable of arguing with anyone. If I had been in the position of parents with a 16+ child with a statement post September, I would of course have involved them in the decision making process – apart from anything else, if I had not done so I would have been met with… Read more »

Judith Payne

I so agree with so much that has been said. I have an unstatemented 15 year old with High Functioning Autism but low academic ability but seems at first sight as bright and articulate. How come he is being treated as an “adult” by the Govt although he has to stay on at school, can’t vote or drive etc and needs to be generally treated as a 10 year old with regard to his understanding of the world. He too would spend all the DLA at Game etc, has little value of money, cant tell the time but is expected… Read more »

Megan Neves

As a person with Dyspraxia I must admit if my parents had tried to make decisions on my SEN needs at 16 it wouldn’t have gone down well. When I was younger they obviously understood it a lot more than me, but I think there became a point where my understanding surpassed theirs as I am the one who experiences it therefore I know my needs better then anyone else. I went to sixth form college at 16 and that’s when it was all put into my hands. I’m now 21 and at university, and although my parents still support… Read more »

I agree that trying to make decisions for young people without consulting them would be foolish in most cases, as well as a waste of time, as Megan has pointed out. But what we are talking about here is a proposal which could effectively cut parents out of the decision making process, so that young people would be very much at the mercy of local authorities who may well be putting forward suggestions based more on cost than what is really needed. Having parents in there as well is a big help to ensure that people don’t get taken for… Read more »

jan edwards

The situation is worrying as most parents continually support the SEN children throughout their Adult lives yet this goes unnoticed by the powers that be. Maybe an early challenge through the Courts would help , however in our case we ended up at Disability discrimination Tribunal for post 16 education and our local council have continually fought us . Although our ASD Son is now 22 he is still not capable of making his own decisions as has been proved recently by a cold telephone call from a well know bank offering him house insurance . Lucky we were near… Read more »