It’s been an incredible year in the SEND world, but not because the system has started to work better, or because families are routinely at the centre of decision-making. It’s been incredible because of the numbers of parents who have risen up and demanded an end to cuts to SEND and improved funding in the system. Parents have also taken the law into their own hands this year by launching legal challenges to stop councils pushing through illegal cuts and policies that damage disabled children.
As Co-Director of SNJ, my role at the moment is more ‘behind the scenes’ with joint decision-making and planning. Tania & I also went to lots of events together in 2018, including the launch of the RIP:STARS young people’s research (more of this later), the launch of BILD’s Greater London Learning Disability Community of Practice, and of course, Festable. We also joined with the NEU's march on the Department for Education with the SEND National legal action parents.
At the end, we’ll include links from our most note-worthy and our most popular posts of the year, but first I would like to say few words about our work this year.
SNJ in 2018
I’d like to highlight just how much has been achieved by SNJ over the last year which is almost entirely down to the sheer determination of Tania to ensure that all parents have access to impartial, accessible information no matter what difficulties are going on in our own lives. Despite having a very difficult year personally, she never failed to forget the parents that were relying on SNJ to decode what was going on in the SEND world.
Tania gets very little recognition, despite how many parents SNJ has helped over the years. I would be lost without her and am so proud to call her a friend and partner in crime.
So in the spirit of kindness and thinking of others that this time of year brings out in us, my end of year message is to take the time to tell someone if they’ve done something to make a positive difference in your life. We are quick to shout loudly if someone has let us down, but often forget that a simple thank you means so much. If we only shared our appreciation as often as we share our disappointment, the world would undoubtedly be a kinder place.
Many people think that SNJ is our ‘job’ and are surprised to hear that we do it for free, around trying to take care of our children who have complex needs (even the grown-up ones!) and doing other things to make ends meet financially.
It’s not a labour of love, it’s a passion, driven by the desire to not just complain about what isn’t working, but to actively do something to change it. We try to make it interesting and easy to understand, along with a sprinkling of humour and dollop of fact-based opinion. In this, I think we are unique, but we believe that there is power in numbers. Equipping parents and young people with the means to understand their rights and to self-advocate is the way to change the system. It’s only when you know what good practice looks like that you can start to see what it is you are really fighting for. And our practitioner-readers are learning the same information, because parents can't do it alone.
We know that the parents who, across the country, are taking legal action against their councils, get their information from SNJ and we’re proud to have played a role in empowering them to take action - more power to them in 2019. We're behind you and here to help where possible.
We’ve reached millions of people this year, among them not only parents, but practitioners from education, health and social care; local authority staff; SEND charities; and officials and politicians from local and national government.
Team appreciation
SNJ columnist, Matt Keer gave evidence at the first SEND Inquiry hearing and has been a powerhouse of stats all year. Follow his sardonic musings on Twitter at @CaptainK77
As well as Matt, we are very lucky to have knowledgeable people give their time for free to help us achieve our aims, and we couldn’t do it without them. We have never charged for access to the site or the many resources we provide, as we know that the people who need it most will be the ones to lose out if we did. We’re not in it for profit, we’re in it to benefit parents and their disabled children.
So thank you to our columnists and to everyone who has written a guest post, who have added so much value to what we are able to publish.
We also do it because we are the same as you. We, too, have had to dust ourselves off over and over trying to make sure our children get the healthcare, education and social care they have a right to. SNJ, the experts that write for us, our volunteers, our Facebook page commenters and our Let’s Talk about SEND Facebook group of parents and practitioners, are a community of like-minded people. All of whom want to use their brains, guts and resilience to make things better. That is a remarkable achievement, so thank you to everyone who has contributed to that in any way.
This year, we’ve also updated our very popular SEND Flow Charts that explain the system’s process and added a new one for the Annual Review, thanks to Associate Editor, Marguerite Haye. We’d like to extend this range, with charts for Early Years and Post 16 options, so if you think you can help, get in touch.
As well as Matt and Marguerite, we’d like to say a special thanks to two other people. First, Angela Kelly, our Mental Health Editor and fellow SEND parent, who writes posts about wellbeing you find really helpful. Ange never hesitates to step in and pick up the social media reigns when needed, too. Second, Hayley Mason, our SEND lawyer columnist, has brought some really useful legal insights that you can rely on.
About Young People
This year I was so impressed with the drive of the young disabeld people from RIP:STARS to take charge of their own lives and advocate for themselves. The research they've conducted, and the advice they've produced is one of the best resources I’ve come across, in what is a very under-resourced area of SEND. I was heartened that my own concerns around the lack of empowerment of young people for self-advocacy are shared by RIP:STARS. I’m very excited by our plans to work with them in 2019 to provide you with resources that we hope will start redressing the balance. We’ve invited them to write more about their research for you in their own words.
Tania was also inspired by the young Ambassadors from Ambitious About Autism, when she spoke at their "We Need an Education" event this year. We’ve invited them to write columns for us to highlight the youth perspective. We’ve also been impressed by autistic teenage campaigner, Siena Castellon’s efforts to create a National Neurodiversity Week - and backing her too.
So, please let us know if and how we’ve helped you over the last year in the comments (they’ll get lost on Facebook) and tell us about your own successes so we can end the year celebrating our collective successes.
If you’re able to, also please consider donating if SNJ has helped you. Every pound counts and helps us pay to keep the site going without having to starve our children.
Have a restful Christmas and see you in the New Year! Because in 2019, the roar will be deafening...
Top 10 posts of 2018
- Nancy’s tips for writing an EHCP parental statement by Nancy Gedge
- One parent’s seven steps to success for her autistic son’s EHCP by Fiona Jones
- Against Human Rights: Landmark ruling against school exclusion for behaviour related to autism by Tania Tirraoro
- Refused an EHC assessment or unhappy with the plan? Read our next steps by Hayley Mason
- Are Teaching Assistants bad for children with SEND? Bren Prendergast
- National SEND Inquiry: House of Commons Education Committee calls for evidence (Please note: You can STILL submit evidence up until the end of the inquiry next year.
- Ten top tips to get a ‘good’ Education, Health and Care Plan for your child By Hayley Mason
- Zombie Statements: Councils to miss legal EHCP transfer deadline for thousands of children by Matt Keer
- LA Watch: Dodgy SEND policies, parent power and how to fight the cuts! by Matt Keer
- The Department for Education replies. 1: SEND Provision by Tania Tirraoro (see part 2 on EHCPs here and part 3 on Accountability here)
Enduring Favourites in 2018 from earlier years
- The role of the SENCo: What do you need to know? by Malcolm Reeve (2015)
- Get Prepared SEND Checklist by Tania Tirraoro (2008 - updated 2014)
- Autism in Pink: Helping to identify autistic girls by Tania Tirraoro (2014)
- The SNJ/DfE Flow Charts by Tania Tirraoro(2014, updated 2018)
- Pathological Demand Avoidance – one family’s story by Deborah Rourke (2012)
- Strategies to support expressive language by Helen Coleman, SpeechBlog UK (2014)
- What makes a good outcome in an Education, Health and Care Plan? by Marguerite Haye (2016)
- Exam Access Arrangements: what are they and who gets them? by Bren Prendergast (2016)
- The £70 million council costs of fighting – and losing – against parents at the SEND Tribunal by Matt Keer (2017)
- Battle of The Bands: The rise of ‘banding’ for funding SEND by Matt Keer (2017)
Our other faves from the year
- Shocking rise in autistic pupils being excluded from England’s schools by Tania Tirraoro
- Help! I’m a parent carer and I’m on my VERY last nerve! by Tania with Angela Kelly
- How SEND parent support in England is changing, by Christine Lenehan
- Schools breaking the law on helping children with medical conditions by Tania Tirraoro
- 70% of children with Pathological Demand Avoidance missing out on education by Vikki Threlfall
- How to use the law to fight local SEND cuts: ACT NOW! by Steve Broach
- The legal loophole that’s stopping young disabled people from getting to school by Amanda Batten
- “Forget the Health and Care and just call them Education Plans”: SENCOs’ perspectives on EHCPs by Laura Crane and Lauren Bosely
- SEN Support in schools: Finding out what works in practice by Amy Skipp
- ATU Autism scandal: PDA Society calls for Rescue Mission. You can help by Vikki Threlfall
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Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
- Neurodiversity and Ableism – a young person’s perspective - April 28, 2023
- Where is the Best Accessible Museum for Children? Vote now! - March 27, 2023
- Nowhere to go: The lack of provision for young people with complex needs - February 22, 2023
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