The 2019 SEND Advocates’ Stampede

The 2019 SEND Advocates' Stampede

🎵

Seems to me now
That the dreams we had before
Are all dead, nothing more
Than confetti on the floor
It's the end of a decade

🎵

In another ten years' time
Who can say what we'll find
What lies waiting down the line
In the end of eighty twenty-nine

Happy New Year, ABBA, Super Trouper 1980

🎵)

Around the turn of the decade forty years ago, my older sister bought Super Trouper by ABBA, the LP that featured the above lines in the song, “Happy New Year”. 

The lyrics above are strangely prescient of the SEND reforms at the moment. Those dreams we had during the reform process of a fully-functioning, compassionate system are torn and trampled upon like yesterday’s confetti. 

But unlike confetti, SEND advocates are not to be trampled upon. Last year about this time, our headline was “The year parents roared”. Looking back on 2019, the headline must be the year SEND advocates stampeded.

2019 culminated for us in the joining together of SNJ with SEND National Crisis and SEND Action under the umbrella SEND Community Alliance. In 2020, we’ll be working out what this means in practice. We want to be able to accommodate other groups who’ve asked to join but we also need to be fleet of foot. As volunteers without specific working hours, we tend to communicate at times others might find unreasonable! But we welcome ideas as to how we could structure SCA so that we are inclusive of everyone who wants to be involved at different levels, perhaps as a membership organisation. Add your ideas in our feedback form at the end!

For the wider disability field, Our Inclusive Futures has been created, to discuss ways forward to ensure this new Government, who are (allegedly) “servants of the people”, are held to that. For me, this includes reforming the beyond disastrous, cruel and inflexible Universal Credit system, and the wholly disgusting PIP and Work Capacity Assessment systems that are nothing short of humiliating and degrading, staffed by under-qualified assessors looking for ways to strip away benefits any way they can. 

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SEND in 2019 is an increasingly political affair

Disabled children getting the support they need to thrive really should not be political at all. I mean, how can there be two sides? Of course, everyone says they want the support for disabled people, but paths diverge when it comes to deciding how much they need, how much they should actually get and how much should be spent on it. Especially in an era when the belts of local and national government leaders have been tightened so much, it’s cut off circulation to their brains. 

It’s here that attitudes have hardened over the last few years – and not just in SEND, but across the whole disability spectrum from social care and financial support for disabled adults, right down to the smallest children and their carers. In other words, the most vulnerable. And as so many just voted for more of this, it makes me wonder if humanity has been brainwashed into believing we’re in a reality show called “The survival of the fittest”.

Disabled people and their carers cannot be trusted, apparently, to know how much support they need. And the laws of the land often have little to do with it either which means those less informed or able to fight, lose out. It’s fair to say that SEND was ever thus, but now LAs seem to be taking gaslighting to a new level.

Gaslights on full

Recent Freedom of Information requests by the Press Association show that while more EHC assessments are being carried out, the number of refusals to issue plans are rising. To me, this looks like LAs are finally realising that they lose almost all Refusals to Assess cases at Tribunal. So, as they most likely have to assess anyway (which may not be much of an assessment at all), they’re just kicking the refusal further down a stage and refusing to issue the EHCP– hey, we looked into it! They don’t need one! 

In this way, their figures for RtA appeals fall and parents may be more inclined to feel they have been heard after an assessment (though they haven’t really). Plus, by the end of this longer 20-week (read: often a year or more) process, parents are even more exhausted and children have been effectively left without provision for a much longer period, thus saving money. It wouldn’t surprise me at all if some LAs decide which children to assess by the profile of their parents. Not likely to appeal at all? Refuse to Assess. More likely to appeal? Assess and then refuse to issue an EHCP. 

A Tribunal direction to carry out an EHC assessment is much more likely to end up in an EHCP, because the parents will have done all the work to get evidence for the SEND Tribunal already. Pushing that parental prep down the road a year, to an appeal against a lack of EHCP, means so much more money saved. LAs, if this is what you’ve been doing, we're on to you and it’s time to stop playing games with children’s futures. 

2019 on SNJ

We published 110 articles in 2019, including this one, mostly from me, Renata and our brilliant columnists, but also dozens of guest posts by parents, SEND researchers and expert professionals. 

High spots included The Autism Show, which was great to meet so many parents over the two days, but left us with little left in the SNJ reserves (financial and energy-wise!) If you have energy problems, check out our pacing post

Another exhilarating event was taking part in the SEND National Crisis London march, where Renata and I spoke in Parliament Square – something we won’t easily forget. It was simply an amazing event – not just in London but across England and in Wales. Kudos to Poppy, Nadia and team for all their hard work and we’re looking forward to working with them in 2020 under the SEND Community Alliance banner.

The other amazing SEND action was from, er, SEND Action led by Gillian Doherty, who took the Government to court over [SEND Funding] and although they didn’t win the fight goes on.

Systematic SEND failings exposed

So much evidence has been gathered and published about the dire state of SEND in 2019, it's hard to see why the Department for Education needed more for its own SEND Review. Here are our posts to prove it: 

  1. The SEND Inquiry where our own Matt Keer not only gave evidence but SNJ was cited multiple times by the committee. Report 1 (Matt Keer) Report 2: (Catriona Moore)
  2. SEND Funding Inquiry: SEND funding “completely inadequate,​” says Education Select Committee report
  3. National Audit Office SEND Investigation
  4. Ombudsman report into SEND complaints
  5. SEND Review (still to report)
  6. People power! Parents and disabled children march to end the #SENDcrisis
  7. SEND Transport: Home to school transport for under 16s Consultation (still to report)
  8. A setback at the High Court, but parents’ SEND Action goes on
  9. Public Accounts Committee Inquiry into SEND (still to report)
  10. DfE Research: Mainstream Teaching Assistant cuts negatively impacting SEND pupils
  11. Launching the SEND Community Alliance: An independent campaign group
  12. SEND Community Alliance: A Manifesto
  13. Relentlessly unlawful LA decisions are damaging children and forcing the SEND Tribunal into crisis

We’d like in 2020 to feature more great practice to encourage schools to do more of the same. We know the DfE likes this, and we’re happy to oblige. However, I’m afraid you’re not going to see happy parent stories until they start to report a general change for the better. It’s hardly fair to champion one fabulous EHCP happily bobbing along in a sea of disabled children desperately waiting on a sinking ship for an EHCP life-raft. 

To further the analogy, it was once put to me that SEND reform is like a tanker changing course…it takes time. All I can say is any tanker that takes more than five years to turn around needs to have an urgent look at how well the captain and their crew are trained. <<< Because TRAINING is where it’s at. Not just in how it’s done but WHY it’s done – the hearts as well as the minds. That’s what we need in 2020. 

And the much-lauded extra funding? It’s a start but that’s all – it puts us back to the start which is not where we should be at the end of 2019. 

Other 2019 Highlights on SNJ

But the politics of SEND were not the most popular posts published on SNJ in 2019. That honour goes to educational psychologist, John Holland, and social worker, Gabriella Pell, based on their research article, Children with SEND and the emotional impact on parents. It struck many a chord with parents, but as most of you leave comments on the Facebook page and not on the blog, they get lost into the Facebook morass (hint: leave your comments here to make sure they stay with the post

“The SEND process can have a significant and sometimes unrecognised effect on the emotional wellbeing of parents. We carried out three projects, our hope being to listen to the views and experiences of parents, to raise awareness of the issues affecting them and to offer some level of reassurance to parents, that they are not alone.” 

Children with SEND and the emotional impact on parents

The second most popular post came from columnist Angela Kelly. How can children be traumatised just by going to school? Angela also introduced another big post about the emotional impact of parenting a disabled child, this time from Jo Griffin of Affinity Hub, along with therapeutic support strategies from Angela herself, who is a qualified counsellor. It seems like it was Angela’s year, with another of her articles proving very popular: Autism and Anxiety: What helps?

Meanwhile, our SNJ stats guru, Matt Keer’s top post was a cautionary tale about finding help with the EHCP process Getting Help with EHCPs: Be Careful Out There! His article, EHCPs in 2019: Bedded in, or bogged down? was also very popular. 

And considering it was only published in November, a post about safeguarding in schools from Marguerite Haye and the Safer Schools Alliance has proved very popular, making the top 10. This, I think, reflects the often confusing and frightening issues the subject raises. 

Browse the 2019 SNJ archive here 

SEND Parents' hopes for 2020, Accountability and more accountability. I think that 
positive change is ahead, solely because parents, 
carers and professionals are finally standing 
together and fighting for a better system
From our Facebook group

Person of the year

It’s so hard to pick out just one person in a year of such amazing advocacy. But for me, one does stand out. And that’s neurodiversity campaigner and autistic teenage scientist, Siena Castellon. As soon as I spotted her on Twitter, I snapped her up as an SNJ columnist and we supported her Neurodiversity Celebration Week campaign throughout the year. We first met in person when she won the Shine A Light Young Person of the Year award, and I dragged her and her lovely mum around the reception afterwards, introducing her to anyone who could help her campaign. 

Despite the tough time Siena had at school through discrimination and bullying, and her own health issues, she recruited hundreds of schools and organisations across the globe to her campaign. This young woman continually astonishes me with her drive, intelligence, integrity and determination, not to mention how she keeps on top of Twitter while simultaneously slaying exams and writing a forthcoming book. Far from people suggesting autistic people lack empathy (which is rubbish), Siena has it in bucketloads. In 2020, she has her A-levels and university choices so she'll need even more help for NDC 2020. We’re there for you Siena. You rock!

As well as Siena, we’ve introduced more young writers to SNJ this year and we will continue to do the same in 2020. We want to remind the powers that be just why, and for whom, we’re doing this. 

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Rocket-fuelled 2020

So, we start 2020 with anger at boiling point. Our anger is like rocket-fuel that’s replenished whenever we look at our community of disabled children who still don’t have the support they need. You see, we’re tired, hard-pressed, but those who think we will fade away should think of us like Weebles – you can knock us over but we will get back up. Because our children’s future is too important to give up the fight. 

SNJ needs YOU

To keep going, we need YOU. As I mentioned in our Christmas post, we need you to join us as a patron, helping is with monthly donations (you get some cool stuff as a thank you too). We want to do stuff in 2020 that costs money, like perhaps hold a major conference. To do this we need to apply for funding, and need evidence of our impact, so please help us by telling us below what SNJ means to you and what kind of conference you would like. (PS Patrons will get a free ticket) 

Onwards to 2020 and a new decade. Let’s hope by 2030 the need for SNJ will be a thing of the past!

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Tania Tirraoro
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