Tania writes:
Last week I spoke at a top-level conference for council Chief Executives and Leaders from the SE7 - seven local authorities across the south-east of England.
I was there as part of the Surrey pathfinder, to talk about how parent involvement had become integral to the SEN reform process. Parental participation was demanded by the government and in the Surrey pathfinder, it has become much more than just 'joining in'.
I'd like to share my short speech with you because I know that we, in Surrey and the SE7, are among those leading the way to culture change for everyone involved in special needs & health and social care provision for children and young people.
I'm not saying Surrey has changed yet at the 'coalface', but a change is gonna come...
If all this is new to your school, SENCo and local authority, whether you are a parent or practitioner, please read this. As I said in a post the other day, the DfE wants culture change training to start now. But to coin a phrase - if you're going to HAVE something different, you have to DO something different.
Let me know what your thoughts are in the comments...
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My name is Tania Tirraoro, co-chair of Family Voice Surrey. I also run a "Times Top 50" website called Special Needs Jungle that aims to help parents whose children have special needs & disabilities.
I started that website as a direct result of the experiences I had of trying to get statements for my own two sons who have Aspergers and other difficulties. It was adversarial, stressful, frustrating, at times emotional - and we had it easier than many, never having to go to tribunal.
In the five years since then, I have heard so many parents describe horrific - and hugely expensive - experiences of battling to get the help their children need. Of quite disgraceful treatment by local authorities, considering that those parents were only asking for support…
I don’t think it’s unfair to say that parents were viewed by professionals as grasping, demanding and, quite frankly, a bloody nuisance - interfering with their jobs ‘delivering’ services to ‘the client’ (in other words, children)
Parents have been left at breaking point, bewildered and angry as to why they should have to fight for what you would think anyone would want for any child - the right support provided in a timely manner.
You might look at me and think I'm one of the "sharp elbowed middle-classes" the right-wing press like to sneer at. But that's not where I came from and I'm in this to help those parents be heard, who don't even know they're allowed to have a voice.
So. Here we are. The government decided enough was enough. Things had to change - and what was more, parents were mandated to be a part of it. Imagine that. I can only guess at the gasps of horror from SEN departments across the land.
But, I have to say, and I know Susie [Campbell, Surrey's Pathfinder Manager] will agree that- in Surrey at least- the sky did not fall in on County Hall and it’s all working out quite nicely so far.
From a starting point of mutual suspicion that has taken time to overcome, we’ve worked to build up a relationship that has steadily improved - because we wanted it to work.
We now operate what we’re calling co-production - working together as equal partners - this is a revolution in thinking and really, it’s as it should be!
Parents representatives sit on every workstream of the pathfinder and on the Local Change Board.
I have seen guards come down over time and views shared in a measured and respectful way - but of course it hasn’t all been plain sailing - as in any sphere, it can depend on individual personalities and it’s up to everyone to make sure this is managed.
On the whole, parents have discovered that practitioners don’t have horns and practitioners have discovered that parents have valuable insights that they may not have previously considered. This can only be for the benefit of who this process is all about - the child.
There is still a long way to go with: culture change for many within local authorities and with confidence for parents outside the pathfinder - there’s no magic wand.
But the genie is out of the bottle and when the pathfinder is over, parents aren’t going to away quietly and those with whom I work within Surrey don’t want them to - and neither does the government. We’re already involved in other work for example the Disabilities Expert Group and Gap Analysis for SEN provision.
This is going to be the new normal - But - and this is a big but - it needs to be sustainable.
Parents came into this as hopeful and willing volunteers, but now that the benefits have been realised and we are working as co-producers, local and national government need to look to how they can support the continued involvement of parents as we ALL work together to improve outcomes for children and young people with SEN & disabilities.
***
So - what's your opinion of the reforms?
And - if you're in Surrey, see this link for our upcoming conference on the SEN & health changes
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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I am just going into the one plan system but am concerned health are not involved and the pathfinder leader wants to chair meeting – when I questioned this was told I could have independent if I envisaged conflict but their brief states independent to chair and anytime I question something I get told I can pull out at any time…… I have meeting set – there will be me, Parent partnership as the liaison, 6 from education, 1 from social care, 0 from health…..
Hi Hilary.
I am afraid your experience is not uncommon when it comes to a lack of health participation and culture change has made virtually no indentation in the NHS at all so far. This is going to be a huge challenge.
I assume the pathfinder lead wants to chair as they are trialling the system and want to see how things work. Perhaps as a compromise you could ask for an independent chair but have the manager as an observer? Remember, you are in the driving seat at all times and your feedback is vital – so make your voice heard if you are not happy with anything.
This is your chance to help change the system as well as help your child, so don’t hold back! I would be very interested to hear how you progress, so do please keep us up to date!
Tania
I do HOPE that attitudes towards parents will change as a result of this. I gave a short presentation to a group of Student Educational Psychologists at Surrey University recently. I asked to sit in on the lecture previous to my part, only to listen to them state that the “mental health of the parent must be considered when assessing a child for ASD” Implied was that some of us are barmy and this has caused the child’s problems! As I immediately pointed out, by the time we see an Ed Psych, many of us have had 5 years plus of sleepless nights, worrying, struggling with initial diagnoses etc. Perhaps they should consider that of course our mental health is affected!
On the plus side, the students were respectful, genuinely interested in my experiences and seemed to have a different outlook to the majority of entrenched views held by the LA. So maybe there is hope after all!
Well done for your initiative, Victoria and I agree – some parents I know have been turned down several times before they even got an assessment and the time that was lost has severely impacted on their children’s development. We have to participate, be hopeful, but keep our eyes and ears open.
Excellent speech Tania. I agree with the idea of co production but as I’ve mentioned to you on twitter I am troubled by the potential for authorities to discriminate parents on who they are and where they live. In my area Ive become aware of an attitude that is biased to involving those parents in the deprived areas. Indeed at a strategy meeting I attended as a parent rep, a council worker said to my face (nastily as well) that “it was OK for parents like me” meaning what exactly, that because I’m educated and supposedly middle class that everything is hunky dory. Actually I come from a working class background and my life is far from hunky dory but that is not the point, the point is that these judgemental attitudes need to be broken down if we have to develop respect and cooperation between practitioner and parent.
I realise that I haven’t directly answered your question about reforms. However, the attitudes Ive mentioned above I have come across whilst going through the SEN process. It has been disappointing how so many practitioners have come into our lives with such judgemental attitudes. Our SENCO was the worst when she assumed we were middle class pushy parents who were on the bandwagon for an autism diagnosis for our son. It blinded her to the needs of my son which were ultimately picked up too late with the result that his health has been seriously affected and his education is in tatters.
So for me cultural change is so important but it must also include a change in attitude from those involved with parents and children. To judge parents in whatever way risks ignoring the needs of the child as it did with my son.
Every week I look forward to your blogs abd everyweek you dont disappoint me so thank you. Co-production is the key and I have been volunteering at my forum for 4 years now. We are a pathfinder and things are changing not sure if some of it wilk be for the better but all the good intentions are there driving the change forward. I am looking forward to the next year to see how things move forward and hoping that parents feel like they are mire incontrol what can we lose hopefully nothing. Thanks tania
In our local branch of the National Autistic Society, we parents have a motto of ‘small victories’, which is quite often what it is all about. We have found that there ARE professionals who take the time to listen and agree to help to make minor changes inside what – by sheer volumes – is a cumbersome system, that can make a real difference to families’ experiences. We’ll keep banging on!
Having only just started on our path as a pathfinder family in Herts, I can see what you mean about the guards not yet being fully down. I am totally committed to being open and open-minded, and at the same time I realise that change in the way things are run is going to take some time – I liken it to the supertankers my Dad used to work on, adn how long it would take to turn one of those around at sea. The point is, if you don’t start with the small steps, you’ll never get anywhere. I like the look of the new single plan; of course there are changes we’d all like to see which may never happen, but at least we are being given the opportunity to feedback and hopefully improve the process in some way. There is no point in being at war with the ‘professionals’, we just have to spread understanding of the issues. Congrats you for all the work you are doing x