A poem by Jayne Dillon – Guest post

SEND Accountability in force (bedding in), by Jayne Dillon

Me Please Assess my child
LA Fuck off! Kiddo don’t meet our dodgy criteria
Me Tribunal

LA ok, we will assess but it’ll be the shittiest, most minimal assessment we can manage. With a few hints at bad parenting for good measure. Then we will refuse to issue a Statement
Me Tribunal

LA ok, have a bloody Statement but it will be seriously crap
Me Tribunal

LA whatevs! We’ve wasted a couple of years, you can have your wording now
Transfer to EHCP

LA I know, pretend we haven’t sorted out the secondary school so we miss the 15 Feb deadline!
Me Judicial Review

LA let’s outsource this Plan! That’ll sort ‘em. It’ll be suitably shit! Let’s remove pretty much all support and provision
Me Tribunal

LA ffs! Let’s drag it out until the last minute. Just to be bastard annoying! We will concede eventually
Emergency Annual Review

LA ok, we will agree to stuff but we won’t put in the Plan properly.
Me Rewrites the Plan

LA removes support by changing wording




Did you see my tweets today? Did you see my tears?

As another Council for Disabled Conference passes, and another day of frustrated tweets trying to ensure parents are remembered, for me it was another day in tears as yet still, after all this time there seems so little hope of making progress against the sheer distance that families still to go for a voice, for change, for improvements.

As I receive response after response suggesting these conferences, (despite being run by an organisation who claim to be FOR Disabled Children) are for professionals, and that there are other avenues for ‘help’ for parents. I wonder what it takes to shift the understanding that is needed to recognise that parents as a group do not need help. They know the answers to so many of the difficulties in SEND provision. They just need to be allowed to give them.

I am told yet again, that if parents want a voice they must join a Parent Carer Forum (PCF) who will feed into the process and policy. But my PCF does not have a voice. They do have committed people working hard to be heard, but I do not see them listened to. What I see is that their funding relies on the Local Authority to agree and therefore their very existence is controlled by them, and who then by default get to choose who can run them, and how those parent voices may take shape.

Members in the audience today showed an alarming level of experience of SENDIST tribunals. If those attending today were professionals the chances are very likely that their experiences were almost entirely against parental appeals. The absence of parents today in such circumstances continues to drive a wedge and ‘them and us’ feel to the Reforms. To have them there would have been humanising.

Being excluded from the conversations between professionals is deeply upsetting, and being signposted to a Local Authority-monitored feedback vehicle as the only method of contributing is not only patronising but fundamentally against the principles of co-production and Section 19 of the Children and Families Act 2014.


Parenting with two wheels: A moral dilemma


My 5 year old, Blest, as the youngest of three, is often required to accompany the chaperoning of the two older two. On Wednesdays he must be collected from school, travel home on foot to meet my Kipper’s SEN Taxi which arrives 10 minutes after we arrive home, and then, within the next 10 minutes accompany me back to his school to pick up his sister Kitty from her after school activity. This is usually not done without a fuss, and who could blame him, especially when the weather is bad?

Wheel one:

After waving off Kipper, Kitty and Blest scoot to school and leave their scooters at the school gates. At school pick up time I collect Blest who picks up his scooter and we set off home to meet Kipper. 5 minutes later I ask Blest to put on his shoes. He refuses. ‘Not again, I don’t want to go back to school’. I didn’t either to be fair, it was absolutely tipping it down. After repeated demands he throws his shoes at Kipper who is laughing at him. I collect the shoes and put them on his feet whilst he is kicking out. He then refuses to get up off the floor and walk. We are by then fairly late for collecting Kitty.

I manage to get him up but he refuses to walk, shuffling along and screaming out when Kipper ‘looks at him’. I ask him to please use his scooter as we are now significantly late but he walks past it and I take his hand and literally drag him to the school crying and deliberately splashing in puddles. When we arrive, Kitty is the last one standing by her teacher, (who is demonstrating her annoyance by hugging herself in her cardigan and dramatically dodging the drops from the small shelter she is standing under). Blest is further angered to realise that Kitty has her scooter now, and he does not. This misery extends into the evening and turns into rows about dinner and bedtime. How I hated Wednesdays. End.

Wheel two:

After waving Kipper off, Kitty and Blest walk to school without their scooters. Going to school is an established routine and neither child complains about it. Sometimes we take scooters, and sometimes we do not. Wednesdays we do not. It is raining again.

At school pick up time I collect Blest and we walk home to meet Kipper. Again this is an almost daily affair and it happens independently of scooter accompaniment. He asks me if I have brought his scooter but I tell him I haven’t. This is a regular, though not consistent answer. He accepts without a fuss and we get home in time to meet Kipper’s taxi.

10 minutes later I ask him to put his shoes on to go and collect Kitty. He complains but I tell him he can go by scooter. ‘Yes’ he shouts and punches the air. His shoes are put on eagerly and, though again it is raining, we are at school with time to spare. I carried Kitty’s scooter there and they both scoot home together happily. Evening is peaceful. End.

These are both true stories but what are the ethical and moral questions within them? Should I have restricted access to the preferred transport method (scooter) in the morning the way I did in ‘Wheel two’ in order to improve the chances of meeting a goal I had for the evening? Which version has the happier child? Which version has the happier adults (parent and teacher)? Should I been more of a disciplinarian in ‘Wheel One’ and delivered serious consequences for shoe-throwing or walking slowly? Should I have told the teacher to stop being so dramatic and understand that we are late because Blest is only 5 and can’t help it? Should I have cancelled Kitty’s after school club or found a babysitter for Blest rather than restrict the scooter in the morning?

Would appreciate your thoughts or comments.






So how ‘should’ we collect a child’s authentic voice? EHCP Part A

In November I attended the conference ‘Two Years of Education Health and Care Plans: Are we there Yet?’ at the University of Roehampton where the results of a research project on the quality of Education Health and Care plans (EHCP) were presented, and implications for children, families, professionals and policy was discussed. A large focus of that conference was Part A, and research presented on the likely authenticity or otherwise of the child’s voice. It raised many questions for me which I blogged about Here. However, it did lead me to better consider how I might get my son’s authentic voice for Part A and Secondary Transfer.

I believed that asking a child with ASD/ADHD and an expressive Language Disorder (who had never been in a Secondary school), to give their views about their future to a relative professional stranger, requesting this information according to their own school visit schedule, was unlikely to produce an authentic voice. I was already aware of my beliefs that a voice is never isolated but is embedded in relationships, negotiation and perspective.

I also believed that that a child’s wishes and dreams can’t be caught in a moment but will be expressed over time and during intimate moments with people they love and trust. Therefore, I set to collect statements my son made through these many interactions, discussions and sharing of worries, and recorded them in real time in a notebook or on my phone.

When I felt I had enough (and the deadline from the Local Authority was pressing) I typed up the statements and printed them out, cutting them into strips to be sorted by my son under three headings. ‘Need’, ‘Want’ and ‘Don’t Care’. I left him in peace to decide for himself and made no judgements when I returned.


When that was completed, we focused on just the category of ‘Need’ and with ‘Most Important’ at the top and ‘Least Important’ at the bottom, my son ordered the list of statements. Again, I made no comments and my son seemed to enjoy the task and the feeling that he could have some say in what he thought he needed without anyone demanding that he use language he finds difficult.


It was interesting to find out that the top 3 Needs as identified by him were ‘A school where everyone understands all about me’, ‘Where there are school trips to Italy’, and ‘Where I can get qualifications to have my own house with 2 rooms and go to my job’.

Because we were no longer working from a blank slate or an abstract concept where he was expected to come up with ideas from nowhere or make anxiety-inducing big decisions about his future, I was then able to ask if there was anything missing that he’d like to include. He added at the very top: ‘To find going to school every day fantastic’ and ‘I need a school that does very well and treats me in the way I like and understands me, like my school now’.

Brilliant basis on which to build his Outcomes for Part E, I’m sure you’d agree.






Nothing to see here…. Friday night!

Friday was a rare treat. Meeting up with some people I admire hugely, who I consider empowered, a force for good and people who have their hearts and minds pinned in equality, social justice and carry it off with an incredible sense of humour. I was looking forward to it and nothing was going to spoil my mood.

The tube on the way there was absolutely packed, but as a seasoned rush-hour traveller I forced my way onto it all the same, as did several people behind me. Physical contact with others was inevitable, but was contact with my buttocks from the groin of the man standing behind me really the only way we could ride out the next few stops? And was I imagining it anyway? And if I said something to him whilst unable to move away would I have been subsequently more or less safe? I chose a technique I have used before, turned sideways and put my hand on my hips.

The next stop there was a shuffle of people and the man moved down the carriage out of earshot but seeing his treatment of another woman I knew for certain I had not imagined it. She got off at the next stop. Was that her plan? Or was that also a learned strategy? Why did neither of us say anything? I’m not especially known for keeping quiet when I have something to say. But who would I say it too? Would other women stand up for me at that point? I doubt it. They, like me, were just managing their journeys, had other thoughts and the topic is mundane. It’s almost normality. Had it been more explicit they would have of course, but it was just the right amount of ‘possibly unintended’ for me to come off worse for raising it. I was no doubt picked for being a lone traveller.

Did I tell my friends about the incident when I met them? No. The shame of having failed women by not overtly sticking up for myself, as well as the regularity with which I have experienced this kind of thing meant I’d forgotten it almost as soon as I left the tube.

I travelled back late by tube and by bus. A safe route by all means and one I have done many times. My bus was almost empty but the stop after I had got on, a man got on, and chose, instead of one of the empty seats, the seat next to mine, trapping me against the window unnecessarily. Half way through the journey he struck up conversation asking me where I was going, and what stop I was getting off at. It was disguised as confusion about where he was trying to get to himself. I was suitably vague but polite in my answers. Did he know he was intimidating with his choice of seat and questions? Probably. But how could I be sure it wasn’t unintended? What ‘exactly’ could I complain of and to whom?

Just one evening for a woman in her 40s and nothing at all unusual about it.



Authentic Voice and EHCPs


Yesterday I attended the conference ‘Two Years of Education Health and Care Plans: Are we there Yet?’ at the University of Roehampton where the results of a research project on the quality of Education Health and Care plans (EHCP) were presented, and implications for children, families, professionals and policy was discussed.

It was very well attended and many of those there appeared to be from schools from neighbouring Local Authorities. Though the team are researching the quality of different parts of the EHCPs submitted, yesterday only focussed on parts A and parts E as well as a broad overview of the responses given in a survey of professionals.

The overarching message I received from the survey results, was that professionals felt the system was overly bureaucratic and time consuming offering very little improvement over the old system, with the exception only that the process was more child and family centred and included their voices, which was seen as a positive.

What I found interesting however, was the aspects of the presentation and the following question and answer session that questioned whether Part A consistently reflected authentic child voice. It was found that some Part As were written in the first person, and some where not, but that how it was written was not necessary reflective of whether or not the child had actually voiced those opinions. It was highlighted in particular that there was very little mention in each Part A, of how that child’s voice was obtained, especially where subsequent reading of the child’s EHCP made it clear a child would have found it difficult to articulate their voice unsupported and without interpretation.

One of the attendees explained that in her Local Authority, they recommend that the section A is split into two parts ‘My Story’ and ‘Our Story’ to enable a differentiation between the voice of the child from their family. However, I was becoming increasingly uncomfortable with the suggestion that this needs to be unpicked in this way and that Part As might be variable in child voice authenticity. I was also unsure why this is an area that even needs to be researched like this, unless of course we are prepared to first define voice, and we are prepared to explain in detail why a child’s voice needs to be separated from their parents for educational and budgetary decisions when that child has SEND when we do not require this of their non-SEND peers.

I was also perturbed recently to see in one of the firsts line in the Council for Disabled Children’s Examples of Good Practice Document it states:


So the questions I came away with are:

  • Is a good way of gleaning a child’s voice by way of asking a list of predetermined questions set by someone who sees them on occasionally and with whom they have a formal relationship?
  • Is it good practice that the child would be expected to produce this voice on demand according to a professional’s school visit schedule?
  • Is it good that where a child has trouble expressing their wishes or is unaware of the potential consequences of using certain language terms that they should have their voice interpreted by a relative stranger?
  • Do the child’s actual concrete words carry more weight than evidence of a meaning contra to those?


  • Why does a child’s voice have to be separated from their parents to determine what provision they should receive, when this isn’t a requirement for their non-SEND siblings and peers?
  • Can a child’s authentic voice truly ever be separated from the family voice, even if the child is spoken to outside the home by a non family professional?
  • Why must a methodology for gleaning child’s voice be explicitly written?
  • Isn’t it a given that the child’s voice regardless of whether they or their parents write it,  will have been created through the ongoing dialogue within the home, through night time chats about worries, long car journeys about friendships, experiences and observations of different environments, understanding of resources, support and accessibility locally and at home?
  • Why might the state want to remove a disabled child’s access to parental advocacy and steerage when they are presumably happy for their non-disabled peers to receive this?
  • And finally (and I expect controversially), with ever increasing incentives for Local Authorities to cut provision, what is to stop vulnerable children separated from their parents, being exploited to meet budgetary targets?

It would be unfair and unwise to suggest categorically that a child or young person should not or cannot give their views outside of their parents presence. In particular as Young People enter their teenage years and start their journey towards independence many will want to and this should be respected.

However, why must we start from the very premise that Part A may not be authentic, or that a child must be interviewed by an outsider as the only way to get their true thoughts?

And finally, why, as the people who have the ultimate responsibility in law for both causing their children to receive an education, and looking after their children’s wellbeing and health, is it not assumed and respected automatically, that it should be parents and not the state, who scaffold that child’s voice until they can be understood independently and safely?






The Key to the Door of the Labyrinth

This morning I was lucky to be able to attend a multidisciplinary workshop on the planning of diagnostic services for children with Neurodevelopmental Disabilities. I say ‘lucky’ because it was a 9am start which for many parents is impossible, but I was also lucky to live in an area whose key agencies, were welcoming of parents on such a topic and lucky that there is a PCF who are active in pursuing that welcome.

Image result for labyrinth

In attendance were senior health professionals, representation from local parent groups including @SENDFamilyVoice, @expresscic, and @AdhdRichmond and at least 3 Educational Psychologists. It was sad however to only have one teaching professional present.

Ken Wong, Clinical Manager across 5 Boroughs, presented an impressive picture of how referral times for diagnostic services had been reduced drastically and praised to an extent the pre-diagnostic triaging services. I did point out that focussing on reduction of referral times whilst forcing a pre-referral dance that for us has taken two years ought to be considered as part of this picture but a couple of professionals felt it was necessary to point out that this was what we were there to discuss. An ironic way of shutting down discussion.

The workshop moved on and a suggestion made that children with mild autism and severe autism require different interventions but if you are delivering high quality individualised data-driven evidence-based practice I’m not entirely sure why. However, the suggestions later that some children would be okay in mainstream with the right intervention gave the impression that Health do not understand that ALL children are required to be by law, if their parents choose it. But then one of the main themes from the group feedback was lack of communication and shared knowledge across teams within health and also with education. This frustration was shared equally by the professionals present and the parents but there was no indication of who or what was a barrier to this lack of cross agency information sharing. Funding, as always, was mentioned.

@AdhdRichmond presented an impressive summary of a solution developed by @ADHDFoundation however, which demonstrated not only the potential to meet needs locally and through co-production but in a way that could be self-supporting and raise funds. There was some excitement about the potential of this and there were discussions around creating local hubs of expertise pooling resources from both ASD and ADHD services. This model though has been asked for by @expresscic for a number of years though to no avail so it will need a real push and demonstration of support to become realised.

diagnosis doesn’t produce a golden ticket

There were many other presentations on some of the things professionals had been trying to do to improve services and confidence in families and it was clear there is a real desire to make changes for the better. Pilots and research was presented on things that were working well and suggestions for future direction to reduce waiting times and signpost to resources. There was a real recognition that diagnosis doesn’t produce a golden ticket to support but more like a key to the door of a labyrinth and there was some consideration of how pathways could be made less confusing.

It was concerning however to hear it suggested that both Educational Psychologists and Health Practitioners ought not to make recommendations for children of services that do not exist in some places (such as Occupational Therapy) as these raised expectations of parents and caused problems for professionals on the frontline. Surely the development of these services locally is entirely dependent on the evidence through these reports that they are required? And without such evidence parents are having their voice and their opportunity for coproduction in terms of the Local Offer removed. A strong parent voice enables those in positions of influence to better justify their demands for prioritising the funding for these services.

Overall it was a positive workshop. And there will be another. Already the organisers have listened to feedback about start times and promised a later start for families in future. This is an outcome and a good start. The attitude towards parents and families was respectful and welcoming and I would encourage the new voices of parents who are not affiliated to any organisation to attend and share their experiences and views. I would also suggest that ‘working together’ begin immediately and not wait until the end of the process, so that more educational professionals, particularly those on the frontline are aware of the workshop and facilitated to attend.