Is parental co-production just smoke and mirrors?

Tania writes...

If you're a regular reader of Special Needs Jungle you will know what big advocates we are of parental co-production when decisions are being made about services for our special needs children.

A booklet all about co-production in the South East SE7 pathfinder, compiled by all parties involved including parents, defines Co-Production as "Co-production is one approach within participation and in SE7 Parent Carer Participation is welcoming parent carers to the strategic decision making process as full partners from the start"

You can download this booklet yourself here.

smoke-mirrorThe reforms are now moving into a second phase in the pathfinder areas where those local authorities and parent carer forums involved are working out how to implement the ideas they have been testing out. At the same time, some of these pathfinders have been named as 'champions' and are tasked with guiding the non-pathfinder authorities how to get with the programme.

All along, we've said here on SNJ that cultural change is the key to making a success of the reforms. That you could change all the laws you wanted to but nothing would be any different unless the LA staff carrying out the new system fully bought into the new person-centred, outcomes-focused ethos, where the parents' and the children's views were central to the process.

The reforms were needed in the first place because of the bruisingly adversarial and expensive practice that had built up over the years where many working in SEN seemed to think that taking on parents and their special needs children was some sort of gladiatorial sport. And 'was' is the wrong tense, sadly. It's still going on all over the country, right now, despite the reforms speeding along faster than a Japanese bullet train.

At one of these 'champion' meetings recently, a non-pathfinder LA staff member was heard to remark, "Why can't parents just be parents and professionals just be professionals?" In other words, we like the system the way it is, with us in charge and the parents in their place.

This viewpoint is not unusual and, I am disturbed to report, it's not even unusual in the very areas that are leading the reforms. Many of the people who should be leading the new way forward , injecting culture changes with positive enthusiasm, have either never got fully on board or were just pretending to be in favour while quietly hoping they would soon be able to say, "Oh, yes, parental co-production. We tried that last year. We didn't like it. It took too much time. We're too busy giving them what we think they should have."

So, in order for these reforms to make a jot of difference, a rapid and urgent process of 're-education' needs to begin. Actually, it needed to begin at the same time as the reforms began to be developed.

...Most of parents have additional needs themselves..,, the problems we come across regarding health are dealt with in house ...there's no need to bother the parents about stuff like that... [Précis of comment from a senior SEN practitioner at a recent reform conference. Name withheld to save their blushes.]

But who is going to lead this massive undertaking? Who is going to make all these people, many very senior, have a complete change of heart and begin to openly welcome parents at the decision-making table, to value parents' views as highly as they value their own and those of their 'professional' colleagues.

Nothing, I fear, short of the threat of job loss and maybe not even then, is going to do this. These views that parents should only vaguely be seen (preferably from a distance) and definitely not heard are so very deeply entrenched. And if they are still held within pockets of some, if not all, of the pathfinder authorities after 18 months of reform development, how the bloody hell are we going to change them in those authorities who are completely new to the whole idea in the remaining time before Royal Assent?

And how long will it be before having parents at the table becomes tiresome? After all, we know their views, they're just the opposite to ours, aren't they?

They are hoping, no doubt, that parents and those fantastic, hard-working LA staff who do believe in this reform (because there are many) will become exhausted, marginalised and may give up, and the role of parents will become minimised and then, non-existent. Again.

I urge the Department for Education and Mr Timpson to take this warning very seriously.

Your reforms are in grave danger of becoming a battleground of dashed hopes and disillusioned and furious parents who have worked so hard, turning up for meeting after meeting, even when so often, half those LA and most of the NHS staff nominated to go didn't put in an appearance.

Mr Timpson, you must make it your business to oversee a firm policy of 'change your ways or leave' for those within SEN up and down the country who think they can just wait it out and go back to business as usual. It's like giving us a fab new toy but saying you can't be bothered to get us the right batteries so it works properly.

Taking a firm stance is the ONLY way because the stakes are too high for thousands of parents and vulnerable children whom you profess to want to help.

And I do believe you want to make a difference. I do believe that your department wants to make a difference. But if you do not take speedy and deliberate steps to ensure a change in attitudes of the people who will administer the new system on a daily basis, I fear that it will be back to business as usual with parental co-production becoming a fond but distant memory.

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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
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Nicola

You must have visited our county and sat in on one of the many meetings we attend as parents! That is a brilliant piece which I am sure captures what is going on in many places at the moment, and you are right there is nothing less than a whole culture change needed or the whole thing will fall flat on it’s face. Am off to share your post with our parent’s forum, thank you 🙂

Thanks Nicola. I was driven to write it to try to wake up people who think culture change will all just happen as if by magic. But we know that the power of abracadabra doesn’t reach this far!

There are certainly people working within SEN departments who have no business being anywhere near SEN children. People in the higher positions who appear to actually be prejudiced against disabled children! The law as it stands is perfectly good, all that is needed is some kind of sanctions to force LAs to conform to their responsibilities. But there are definitely people who ought to be sacked on the spot, as there will be no changing their attitude. And yes, there is definitely no real change in the pathfinder areas. People are still being shafted left right and centre by LAs… Read more »

It really concerns me massively that we are STILL hearing these comments from professionals especially at Pathfinder conferences.. I ask parents to challenge these comments if heard. Co production is what Parent/Carer forums have to strive for, and we are monitored each year on whether we achieve co production, this cannot just be placed on the onus of parents to achieve this. Professionals must be monitored on this as well.

AK

From the BBC Ouch blog on an Adult social care, person centred planhttp://www.bbc.co.uk/news/blogs-ouch-23423541

From Gareth Child via Facebook: You make a very good argument – which I agree with, up to a point. These reforms need to be backed up with real sanctions. But I would urge parents to try regardless, because I have come across far too many parents who would not only agree with you, but believe that your argument is a forgone conclusion and that there is no point even in trying. Trying is essential. Not because it will work, but because if we don’t try then it WILL fail. Because of we don’t try then the entrenched view among… Read more »

Thanks Gareth, this is a very pertinent addendum and something both Debs and I would agree with.
*I posted Gareth’s comment from Facebook as the WordPress techno gremlins were conspiring against him adding it himself.*

Mary

It occurs to me that culture change includes all parties? That would include the LAs, the professionals/service providers AND parents. Difficult as it may be, and naive possibly, but is it credible that parents have to embrace a culture change as well and (despite past experiences) try to be more trusting again??

No Mary it’s not at all naive and you are quite right – attitudes need to change on both sides.
But the LA is in a much more powerful position and parents are often vulnerable and need to see that they are welcome before they have the confidence to move forward.
Also many parents are very angry (and exhausted) at the way they have been treated and very often I find they need a good while before they can look at the LA staff as less than ogres.

Excellent post. I agree with Tania’s last comment here. I started to get involved with our local forum but had to give it up because it clashed with the on-going fight I was (still am) having with my LA. My SEN fight has left me so exhausted, distrustful and hateful of my LA there is no way I can work with them. If I’m honest I think it is going to take a very long time for me to get over this and to embrace the cultural change needed to work with professionals on an equal basis. I hasten to… Read more »

Thanks Deb. Your experience is unfortunately, not unusual and I think the DfE may have underestimated the time, work and effort needed to make cultural change a reality. It can’t come from the LAs themselves because they are seen as the cause of so much distress. Many will never understand by themselves that treating parents and SEN children as ‘cases’ rather than as humans, is inhumane and devastating.
We need an SNJ re-training programme!

So well put and the comments are brilliant.

It’s certainly true that a culture change is necessary, and a person-centred, outcomes focused approach could go a long way to making it happen. But culture isn’t a standalone feature of organisations. It’s usually a product of several other features. Just as the culture of, say, Italy, is a product of its history, geography, climate, people, language, food etc. so organisational culture is a product of the history, structure, processes, people, resources and buildings of the organisation. You can change the culture, but you usually have to do it by changing some of the things that make it like it… Read more »

Phil Brayshaw

The Children and Families Bill, although by no means perfect, does present organisations with new opportunities and permission to work in very different ways – whether or not they do that will depend largely on their attitude, culture and values. The great news is we can shape that. I know from experience that conversations across the Pathfinders have changed – not because of legislation, but because of the real engagement between practitioners and families and the opportunity to share and test out new ideas. It’s these new networks, relationships and conversations that will move us ever closer to where we… Read more »