Parents must advocate for each other to make the new SEND system work

I was invited to speak at a conference last weekend called #RoadMapforLife at Swiss Cottage school, a special school in north London. Writing the presentation, I was reminded that even though we're all busy with our lives and especially our special needs children, if we want to get the SEND system that we truly need, it will be down to us to make it happen.

It's obvious that, having been through this reform process over the last few years, we cannot now leave it to politicians or charities to finish off getting it right. No one cares about it as much as we parents do.

Mr Timpson, now safely back in his big, glass-walled office, is sincere in his desire to continue working to improve the system, but he is bound by his political leadership's whims and no matter what is put before him by his DfE team, if it doesn't fit the Coalition, and now, the Conservative agenda, it ain't happening.

The Department for Education has a new man in charge of the SEND section. Stephen Kingdom, who steered the bill through parliament and had a vast amount of knowledge, has moved on to another part of the DfE. In his stead is Stuart Miller, whom I have now met a couple of times, as he seeks to learn as much as he can in the shortest space of time available about all things Special Educational Needs and Disability. Including meeting that scary Special Needs Jungle lady.

It will be down to Mr Miller to lead the forthcoming consultation on the Accountability framework for the new SEND system. It's a bit late, what with coming six months after implementation. Perhaps the DfE thought at first, that those nice people in local authorities would just do as they were damn well told and get with the reform programme in spirit and letter, pronto!

Some individuals have, it's true, but even if they all did, a water-tight accountability system is essential to ensure that what we've spent our time and millions of pounds of our - yes OUR - money on, wasn't just an exercise in hope over experience.

KEEP CALM ADVOCATEBut although the 2014 Children & Families' Act is implemented, we must not take what we've been given and wander away to make the best of it. The reality is that even though parents had a mandate to be at the policy-influencing table, there was never any illusion that we would come away with exactly what we wanted. If we had, we'd still be testing things out rather than, as I have been doing, wading through my sons' draft EHCPs typing, "This is not provision" in the notes.

Aside from a working accountability system, we are faced with LA staff who are still struggling with getting transfers done in the way that the law says they should be done and with writing up plans that include all the sections from A-H, are quantified and specified. They are hampered by a lack of training and of a thorough understanding of the ethos of the changes. This is no criticism of them personally, just that in a new system that is short on detailed rules and on time for making assessments, LAs have lots of room for their own interpretation of criteria and guidance. Thus staff find themselves confused into writing plans that turn out not to fit with the actual law. And then annoying parents like me happen to notice and make a big fuss. Doh!

As a result, My Y12 son still doesn't have a final EHCP, six months after we started it. Luckily for him, his Sixth Form College is doing very well at giving him what he needs anyway. We're also doing Son2's Y11 transfer and here, I can see how the changes will be invaluable, when a plan is done properly. He's currently mid-GCSEs with Son1 mid ASs, so it's all a bit tense in Casa Tirraoro.

I'm not just complaining, I am trying to do my bit to help our LA get it right and this is where I came in - the system won't work unless we make it. It's no good just finger-pointing- we have our role to play now too. Those of us who are able must- in my opinion- flag up bad (and good) practice where we find it.

I urge you all to take part in the forthcoming Accountability consultation when it is launched and to feed back to your LA when things do not go to plan. They should, hopefully, have a feedback section on the Local Offer website. If you can find it.

If nothing happens with your feedback, approach your Parent Partnership/Information, Advice and Support Service. In addition, you should have a SEND Dispute Resolution service (if you're mid-transfer or mid-assessment) or seek advice from IPSEA* /SOS!SEN or similar. You might even have an Independent Supporter!

You can send us a report too and we will compile a feedback dossier. But don't just accept poor treatment and don't just complain to your friends - take action. And most importantly, be an advocate and help other SEND parents, even those you only know a little, whether they're at your school, in your neighbourhood or your community group. Assist them with information, tips, any support you can offer. Pass on links, books, resources that might help them. If nothing else, it's good for your karma.

When there is so much against us, we need to help each other as best we can in any way we can. I'm not great in groups myself, but I do know that I have helped many, many parents by choosing, back in 2008, to write up my experiences of getting a statement on a little free blogsite. And then just to keep writing - maybe I have even inspired others to do the same. Whatever you do to help is advocacy. When you stand up for your child, you are advocating for them too.

In times like these, when the weakest are the least, not the most protected by our own government, parents need to stand together, help each other and speak out with one voice to ensure our message is loud.

I'm sharing my presentation here, in case it's any use to you. It's *All Rights Reserved* so you CAN share it on social media from here or Slideshare but you CAN'T download it without my permission (I'll say yes, but it's nice to ask 🙂 )

*In case you hadn't heard, IPSEA's CEO, Jane McConnell will be soon leaving the charity to take up a Judgeship at the SENDIST tribunal. This is great news for parents as, even though Judge Jane will of course be impartial, parents will be sure that their cases will have a knowledgeable hearing. It's to be hoped the news will also send a chill down the reptillian spines* of LA lawyers, giving them far less desire to be arrogant twits.

(My husband says this is mean, but it's my honestly held belief. And I'm sure they're thick-skinned enough to cope.)

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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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auntieh

Well said Tania!

Amanda Chapman Godwin

I found this really interesting. But I have had a slight issue lately. I decided to apply for an EHCP. I was declined last year for a statement. This year I put a case together which I have been told is very good and looks promising. The only thing is could I delay my request until 1 September because otherwise we will be trying to draft a plan in the middle of the summer holidays. Everyone recognises its my legal right to ask at any time but nobody knows what to do about the 20 week time scale. If they… Read more »