Updates, PCFs, Activism & Boing!
2020 is getting into its stride... and there are some upbeat stories from item 6 to 16
1. Being a Parent/Carer
2. Look out for a Letter from AfC - Richmond
3. Correspondence from local SEND groups
4. Parent Carer Forums (PCFs)
5. Health and Wellbeing Board - Kingston
6. Activism must be a major priority for charities in 2020
7. SEND Community Alliance (SCA)
8. SEN Support - parental feedback wanted
9. Children & Young People’s Plan (CYPP) - Refresh
10. Going to Secondary School - help
11. SEND Local Offer newsletter
12. On Ofsted – from Special Needs Jungle
13. The Personal Wheelchair Budget
14. Chris Packham: Forever Punk (BBC)
15. ‘You’re a Complete Mystery to Me’: Meet My Brother Jamie
1 Being a Parent/Carer
Last week the Ombudsmen report was published; it wasn’t a good report and I was sorely disappointed to read more horror stories. Being a parent/carer of a child with SEND is often traumatic in the truest sense:
deeply disturbing or distressing.
As parent/carers we:
a) Often navigate several systems that do not communicate with each other; we have no choice in this whatsoever (it strikes me that other people complain when their family members become elderly and they navigate similar systems on their family member’s behalf. So… can we say ‘welcome to our world’!?)
b) Too often we see our children bullied and isolated, which leads to mental health problems in 50% of cases (the figures for mental health in children/young people without SEND is nearer 12%)
c) Often become isolated ourselves; especially if our child is not at a mainstream school (there is rarely any playground chat at the end of the school day, if any). And even if they are at a mainstream school, we are the parent of the different child…. (who knew that autism was catching!)
d) Often develop a kind of peace-maker negotiation role with the school where we are advocating for our child with the school and with the statutory services
e) And… to add insult to injury, too many of us find our own extended families simply don’t understand what we’re living through. Many of us lose friends as a result of it being ‘too difficult’
It’s also true that many of us learn more about ourselves and develop as human beings into kinder, more understanding people. But would we have chosen this as a route to personal development? Honestly, I don’t know.
I know I would not change my SEND children for the world, but goodness me it’s been a hard path!
That is the reality of having a child/young person with SEND. And how ever much we love our children and young people, we are in a system that nationally is not working – and it’s exhausting.
2 Look out for a Letter from AfC - Richmond
As I understand it, the Ombudsmen Report had existed for some months already and AfC had not understood that the audit they must publish is already four months into its six-month timescale (the report asked that they begin the audit within three months). That now leaves two months to complete this task.
As parent/carers, I’m fairly sure that most of us don’t care about the Why’s, the Who’s had to do What by When – it’s not our problem.
There is now 2 months for AfC to audit every single EHCP in Richmond and publish their findings.
As I understand it, every family who has a child/young person with an ECHP – or perhaps even the young person themselves – will receive a letter from AfC inviting feedback on said EHCP.
Note to AfC:
If I have misunderstood or misrepresented this, please would AfC inform SENDspeak of the correct process and I will gladly publish it email@example.com
Look out for this letter about your child/young person’s EHCP and reply!
3 Correspondence from local SEND groups
Rather than publish long letters in full, I have uploaded three e-mails on to the SENDspeak website. You can read them here:
1. Open Letter (dated 22nd January 2020) from (those named) trustees of ex-SEND Family Voices, plus other signatories, to the Ombudsmen Report published 14th January 2020
2. Response from Cllr Penny Frost (also dated 22nd January 2020), to the Open Letter described above.
3. Questions from Eleanor Wright, of SOSSEN (dated 23rd January 2020) regarding both the Open Letter and Cllr's response.
The BBC report – update
I included this link from BBC news last week; and am including it again because their numbers are misleading. Those on SEN Support are not included within the audit.
The opening sentence begins: “At least 5,000 children seeking special educational needs support (Send) are to have their cases reviewed after a London council landed a stinging rebuke from the local government ombudsman.”
There are 1495 children and young people with EHCPs in Richmond (a similar number in Kingston, but this is only about Richmond). How many are on SEN Support I don’t know – but are these subject to the audit?
The report goes on to say: “The review will initially focus on the 1,500 children who are currently on education, health and care (EHC) plans. However, a further 3,500 are on the plans outside the council area, or are on some kind of special needs support.”
But, reading the Ombudsmen report shows that the children on SEN Support do not appear to be within the scope of the audit:
Page 4 and page 25, the same text is used (Complaints 1 and 3)
219. To prevent a repeat of the faults found in these complaints within three months of
the date of this report, the Council should:
• Complete an audit of all the children for whom the company appointed to run
its SEN provision is responsible to identify if others have been affected in the
same way. If it finds similar issues with delay, or children out of education, or
inadequate record-keeping, it should put in place action plans to address
• report back to us within six months on its findings and any actions it needs to
220. The Council has agreed to these recommendations.”
Page 20 (Complaint 2)
“184. We have also found the Council’s systems appear to be inadequate. We have
therefore recommended the Council review its provision to find ways to improve.”
The full report is here:
Richmond SEND Crisis - group
Richmond SEND Crisis (Twitter only) who tweeted this, referencing the BBC article, on Friday 24th January:
“Announcement: Twickenham’s MP
@munirawilson has secured a debate in Parliament on 29/1 on the SEND funding crisis. Delighted to have been asked to brief her https://bbc.co.uk/news/education-51107400
2:02 PM · Jan 24, 2020
4 Parent Carer Forums (PCFs)
Without a doubt, the government funded Parent Carer Forums are the groups who will have the ears of Achieving for Children. …and well done the parent/carers who are standing up and taking part in the new PCFs!
Again, as I understand it (and happy to publish an erratum if necessary), the Richmond Parent Panel and Kingston Parent Consortium are coming to an end and contributing to the new Parent Carer Forums (PCFs).
Both PCFs are expecting to launch formally in March 2020, once they have their structures (eg websites) up and running.
In Richmond, Ruils will be the umbrella organisation managing the administration for the Richmond PCF. You can find out more about Ruils here:
In Kingston, they’re a step or two behind and are currently looking for an umbrella organisation. You can read about the invitation to tender here:
5 Health and Wellbeing Board - Kingston
Thank you to Express CIC for posting this on their Facebook page.
“There are approximately 3,800 children with #SEND in #Kingston. The Health and Wellbeing Board on 28 January will discuss how Kingston Council are working to improve these services despite financial challenges.”
Read the agenda and reports pack here:
Everyone is welcome to attend the meeting, or you will be able to watch live here https://kingston.public-i.tv/core/portal/home
6 Activism must be a major priority for charities in 2020
Steve Haines, for Third Sector, 23rd January 2020
“Instead of unilaterally deciding on campaigns and simply expecting people to support them, our campaigners want us to be partners and co-creators in this movement”
“While we were in coalition meetings, new movements formed around us, engaging and supporting fellow campaigners. The growth of the incredible grass-roots movement for disabled children and children with special educational needs, the Send Community Alliance, is a notable example.”
7 SEND Community Alliance (SCA)
The SCA is made up of the volunteer teams from SEND National Crisis, Special Needs Jungle and SEND Action:
There is an option to join their mailing list – but it didn’t seem to work. Best for now perhaps is to ‘like’ their Facebook page. I found their Facebook page very helpful in terms of national SEND News…
8 SEN Support - parental feedback wanted
“Achieving for Children would like to hear the views of parents/carers who have a child or young person receiving support from a setting/school/college for a special educational need (SEN Support). We will use your feedback feed into continued improvements to best support children and young people.”
9 Children & Young People’s Plan (CYPP) - Refresh
The last time this ‘refresh’ was completed, Kingston followed suit just a few weeks later (the plans are almost identical). There will be public consultation on this – for now, have a read and consider how you might contribute as a parent/carer in this community of SEND…
“Richmond Council are currently undertaking a refresh of the Children and Young People’s Plan (CYPP). The plan sets out a picture of how we can ensure our children and young people can have the best possible outcomes in life. We have now confirmed the six values around which the plan will be based. These are:
Keeping children and young people safe and supported
Helping children and young people to be physically and mentally healthy
Ensuring children and young people are engaged in positive activities with the opportunity to fulfil their potential
Building resilience in families through early help and independent access to services
Value 5 Ensuring activities and services are appropriate and accessible to meet the needs of children, young people and families, including those with SEND
Value 6 Support children, young people and their families to successfully transition between stages in their education and to progress smoothly through care services.
Formal consultation on the refreshed plan will take place in February but if you have any thoughts on the values put forward before then please get in touch before the 28 January 2020.”
The current CYPP can be found here:
10 Going to Secondary School - help
Phase Transfer – Information sessions
Feedback from these is that they are a helpful and informal event…
“The aim of these sessions is to support parents and carers to understand and navigate the process of transitioning from primary school to secondary school. Sessions will be held in Kingston and Richmond and there will be daytime and evening options. Parents wishing to attend should register” (use the Local Offer link below)
Kingston Tuesday 28th January - King Charles Centre
Richmond Thursday 30 January - Twickenham Training Centre
11 SEND Local Offer newsletter
I can’t recommend this enough. This is a key part of what the Local Offer is there to do – if parent/carers don’t subscribe and offer feedback, and providers don’t send in their data we’re all missing an opportunity to make things better for the future.
The newsletter also contains a set of regularly updated ‘useful links’
12 On Ofsted – from Special Needs Jungle
Ofsted explains its new way of reporting on SEND provision in education
Tania Tirraoro, with Nick Whittaker, Specialist Adviser, SEND, Ofsted - 17th January 2020
“In one of my roles, I work alongside other SEND representatives on Ofsted's SEND Stakeholder Advisory Group. As I spend a lot of time hearing what our readers think and talking to them via our Facebook page, our group, and social media generally, I am able to represent the parental viewpoint and try do what I can to help improve the experiences of disabled children, young people and their families.
The lead of that advisory group is Ofsted's Specialist Adviser for SEND, Nick Whittaker. Just before the election was announced, he sent me an article about how their new inspection framework will work for reporting on SEND in schools. Because of election rules, we weren't able to publish it immediately, then we had to bring you our election response and bam! then it was Christmas!”
Ofsted’s grim verdict on SEND in England
Tania Tirraoro - 22nd January 2020
“Ofsted's annual report, late because of the election, has a great deal to say about SEND and not much of it is good.”
13 The Personal Wheelchair Budget
Tania Tirraoro for Special Needs Jungle, 10th January 2020
“Personal Wheelchair Budgets (PWBs) are replacing the wheelchair voucher scheme in England and are part of the NHS’s Personalisation Agenda.”
“There are 70,000 disabled children who are in need of wheelchairs or specialist pushchairs in England, and today we're going to tell you about a new law that will replace wheelchair vouchers with Personal Wheelchair Budgets (PWB). They'll hopefully make it easier for wheelchair-using adults and children get about in comfort and do the things they want to do.”
14 Chris Packham: Forever Punk (BBC)
Love this… but it could be my age! The programme is available for another fortnight in iPlayer, but you can download it.
“Chris Packham, environmentalist and life-long punk, reveals how, as a teenager with undiagnosed Asperger's, punk rock may have saved his life. By giving him a purpose, he was able to harness his creativity, which led to him becoming a TV presenter with a determination to champion wildlife.
Now more than 40 years on, as Chris goes to Buckingham Palace to receive a CBE for services to the environment, he asks himself if he has, over the years, turned into the type of 'establishment figure' that his 17-year-old self would have hated?
In a highly personal and revelatory film, Chris sets out to question both himself and other former punks who, like him, rocked against racism, fought for gay rights and caused their parents untold grief, to discover if the values they all believed in still hold true today.”
15 ‘You’re a Complete Mystery to Me’: Meet My Brother Jamie
Alex Widdowson, a British story in the New York Times, 14th January 2020
“What I wish people understood about having a family member with Down syndrome. “
“Alex Widdowson is a filmmaker and researcher, focusing on the ethics of representing neurodiversity through animated documentary. He is based at the Autism Through Cinema project, Queen Mary University of London.”
“My brother, Jamie, has a profound learning disability. Despite being close to nonverbal, he demonstrates charisma, a sharp sense of humor and emotional sensitivity. In the Op-Doc above, “Music and Clowns,” I team up with my parents to discuss what it is like caring for someone with Down syndrome. We piece together fragments of insight to gain a sense of his inner life, but our differing perspectives reveal as much about our own subjectivity as they do Jamie’s.”
A little boy in wheelchair gets to bounce on trampoline 😊 (26 seconds)
If you have any questions at all, please ask and I'll do my best to find an answer.
With best wishes, Romany