Curiosity, numbers & golden updates

Curiosity, Numbers & Golden updates 10th June 2017 Dear All We’re offering a lot of meetings, here are those running next week (more on our website).

Please come along if you can…

Are you curious about your child and their online world?

This workshop, for parents and carers, will explain the things that are available on line for parents to use to help keep their young people safe; we can’t recommend this highly enough!

Monday 12th June - 10.30am to 12.30pm Whitton Youth Zone, Whitton, TW2 7JX Thursday 15th June - 6.30pm to 8.30pm York House, Twickenham, TW1 3AA

Coffee & Cake We hope that our meetings will provide the chance to meet and talk to other parents in a relaxed atmosphere; and to learn from each other. We will also be able to answer your questions on the Golden Booklet (summary guide for parents on EHC processes).

Thursday 15th June - 10.30am to 12.30pm at Express CIC, 452 Ewell Road, Surbiton, KT6 7EL Friday 16th June - 10.30am to 12noon at MeToo&Co, The CrossWay Centre, Twickenham, TW1 2PD * …there are more meetings in the following weeks, please go to our events pages on www.sendfamilyvoices.org/events

A Good Conference SEN & D – strengthening regional partnerships across health & local authorities Last week, Romany attended the above conference in London; it was hosted by NHS England the and Council for Disabled Children. The Department of Education were due to attend, but as it was election day, they stayed home (purdah). The notes will be typed next week and we’ll put these with the slides on our website.

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The breadth of need is clear from the stats below – and surely by encouraging health and the local authority to work more closely, our children’s needs can be better met?

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25% of London’s population are children. Do children get 25% of London’s health budget? (this question wasn’t answered)

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Using the Complex Needs (narrowly defined), there are at least 73,000 of school age with complex needs. That’s an increase of 23,700 since 2004 (includes profound & multiple learning difficulties, severe learning difficulties, autism and in special schools, multi-sensory impairments)

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Since 2004, the number of children with a statement/EHC Plan with autism, has risen in all sectors:

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16,310 in primary schools (+54%) 13,830 in secondary schools (+182%) 27,470 in special schools (+219%)

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In June 2016, 41,5000 children and young people with a learning disability or autism were waiting to see a mental health specialist (open referrals). This included: o 15,015 aged under 18 o 26,550 young adults, age 18 to 25 inclusive This is indicative of high levels of unmet need, consistent with recent research and widespread anecdotal evidence from other services and families.

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Co-production rules… co-production is where families (eg SEND Family Voices) work collaboratively with the statutory services (eg Education, Health etc) on services. In an ideal world, this would be developing new services. In the current climate, it might have more to do with what do we keep, or change?

Golden Binder - updated The Golden Binder has been reviewed and updated by the multi-disciplinary Process Governance group, made of up individuals from schools, SEN team, health, post 16, educational psychology, parents and others.

Some changes and tweaks have been made, in particular:

Forms 1. Slight changes to section A to increase focus on the voice of the young person, while allowing for parents to express their views in a separate section.

2. very minor update to the TR1 (transfer review checklist) form - to correct an ambiguous question

Guidance 1. Additional information in the SEN Support chapter to provide more information on what parents can reasonably expect from a school, reference the new threshold guidance document and provide more information on school funding for pupils with SEN 2. Removal of any reference to Wikis as these will no longer be supported (except for children who are already using them) 3. Updated guidance on completing the EHCP form in line with the new section A 4. A review of the chapter on transferring to EHCPs to reflect a somewhat simplified process - includes a new process graphic

Appendices 1. Addition of the SEN threshold guidance 2. Removal of the leafet regarding WIkis The threshold guidance document especially is worth a look (the link is in appendix 1), as it sets out in some detail the levels of support, organised by type of SEN, that a child could expect to receive, depending on the level of need.

The process governance group will meet again in the second half of September where any new updates or changes will be reviewed. There is, for example, an intention to review the main EHCP form in the light of some recent feedback. If anyone has other comments or feedback about any aspect of the process, forms or guidance they are welcome to do so either to us at SEND Family Voices directly, or via the feedback form on the AfC Local Offer website.

And for anyone that just finds the Golden Binder too much information, there is always the Golden Booklet - which provides an overview.

https://www.afclocaloffer.org.uk/blog_articles/1031-the-golden-booklet-hasarrived?term=the+golden+binder

IPSEA Foundation Send Law Training day for parent and carers [This session] “will provide parents, carers and family members of children and young people with all types of special educational needs and/or disability (SEND) with an introduction to the law relating to the education and training of children and young people with SEND. You do not need any previous knowledge of SEND Law, but must be the parent, carer or family member of a child with SEND. What: Foundation SEND Law for Parents and Carers Where: Amnesty International, 25 New Inn Yard, London, EC2A 3EA When: Thursday 6 July 2017 The cost of the day is £65 and will run between 9.30am and 2.30pm.

Register online for the 6 July here.”

@SENDFamilyVoice @SENDFamilyVoice Hundreds of tweets this week and 50 new followers. Please consider joining us on Twitter - it is a goldmine for information & support. We're following more than 1000 people and organisations and tweet throughout each day.

What does good enough look like? https://itmustbemum.wordpress.com/2017/04/20/wise-words/ Importance of developing confidence and self-esteem in children with a learning disability http://www.downssideup.com/2014/04/the-importance-of-developing-self.html?m=1 School governors: what's changed over the last ten years https://insights.thekeysupport.com/?p=11817 More than a third of GPs have no training in ASD http://www.independent.co.uk/life-style/health-and-families/gps-urgently-need-training-onautism-a7729331.html?platform=hootsuite A World Without Down's Syndrome wins major award: https://m.facebook.com/photo.php?fbid=1717449251616788 Share your experiences of SEND education with the National Autistic Society: http://www.autism.org.uk/get-involved/media-centre/news/2017-06-01-appga-enquiry.aspx A letter to… “my severely disabled eight-year-old daughter” https://www.theguardian.com/lifeandstyle/2017/jun/10/letter-to-severely-disabled-daughteralways-wanted-write?CMP=fb_gu Family play day and Festival of fun at Yorda this Sunday: https://bookwhen.com/popevents

Girls/puberty research Research into minimally or non-verbal ASD girls with a severe learning disability & their experiences of puberty & periods A SEND Family Voices member has been contacted by a postgraduate student undertaking research at the Centre for Research in Autism & Education at UCL (under the supervision of Dr Laura Crane).

Claire is seeking participants (girls who are non/minimally verbal, their families and possibly teachers too) to share their experiences of puberty and periods. There is almost no research out there on this topic - this is a real opportunity to contribute to a unique and exciting piece of research.

Please contact Claire Cummings for further information: claregvc@gmail.com

Irlen syndrome: a screener’s perspective From Special Needs Jungle: “Back in 2012, we ran a parent story about her son's difficulties, "When the words move by themselves – it could be Visual Stress." It's also known as Irlen syndrome and it can affect many areas such as academic and work performance, behaviour and attention and it can also cause fatigue and headaches among other symptoms. It's not a problem with the person's eyes, but originates in the brain. Coloured filters or lenses can often help.” https://www.specialneedsjungle.com/irlen-syndrome-a-screeners-perspective/

"Some of them even learn to read now" Oh, how the world has (mostly) moved on. “This story about a mom finding out her newborn daughter has Down syndrome will touch your heart. (via The Moth)” https://www.facebook.com/TheSceneVideo/videos/1416341168433232/ As ever, if you have any queries at all, please ask and we'll always do our best to find an answer.

With best wishes, Caroline North (for Kingston) and Romany (for Richmond) Phone: 07469 746 145 www.sendfamilyvoices.org