Why do we do this, talking & sparkle time

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Why do we do this? Talking & Sparkle Time 17th June 2017 Dear All The Talking article below lists the parent/carer meetings for the next week, whether they be on CAMHS, the Golden Booklet or on-line safety. Sometime, especially now, we get so bogged down in bad news – we need to remind ourselves of why we do this. What drives us…?

Why do we do this? A reminder… pleases see our short (9 minute) film on Reasonable Adjustments… this is pandisability and in children and young people’s own voices: http://www.sendfamilyvoices.org/film

SEND Primary Age Sports Day Kingsmeadow Stadium - Thursday 15th June 2017 Last week we saw the 2nd ever primary age borough-wide SEN Sports Day, for children who find it difficult to access their school’s mainstream sports day, The Lime Tree school in Kingston hosted ten schools and 120 young athletes. We can’t show picture of children (for obvious reasons), but here’s who else was there… David Weir CBE is a British Paralympic wheelchair athlete. He has won a total of six gold medals at the 2008 and 2012 Paralympic Games, and has won the London Marathon on seven occasions. He was born with a spinal cord transection that left him unable to use his legs Back: Sam, Rachel and Penny (all SFV) Phyz is for families of children and young & Jenny (David’s coach), David Weir people with physical disabilities. Contact with Phyz and SFV leaflets… Penny on: info@phyz.org.uk

SEND Education Review - what do you think?


Please let us know your comments on the report in the link below. We will publish our thoughts soon… “Over the recent months, Achieving for Children have undertaken a review of education provision for children and young people with special educational needs and disabilities in RBK and LBR. Please find attached the report.” https://www.afclocaloffer.org.uk/blog_articles/1116-send-education-review

National Carers Week - 12th to 18th June The theme for this year’s Carer’s Week is Employment. Here’s what’s happening locally: Kingston – see specific pages in their newsletter http://kingstoncarers.org.uk/news/one-entry?entry_id=19541337

Richmond – poster and timetable for a week of events http://richmondmencap.org.uk/ldaweek/

Articles from Twitter… Carers week: DJ Jo Whiley in The Guardian https://www.theguardian.com/society/video/2012/feb/21/jo-whiley-caring-disabled-video On family carers: https://ordinaryhopes.com/2017/04/03/family-carers/ Parent or Carer? https://ordinaryhopes.com/2016/11/02/parent-or-carer/

Talking… (come and meet us and other parents) Don’t miss this last workshop on On-line safety! 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 and allow them to still have fun; we can’t recommend this highly enough! Wednesday 21st June - 10.30am to 12.30pm Castlenau Community Centre, Barnes, SW13 9AQ

Password checker …and, while we’re at it, here’s one of the Online Safety Top Tips. We have checked, and changed, all our personal and SFV passwords. Minimum accessibility for us is 21 centuries! https://www.my1login.com/resources/password-strength-test/

Statements / EHC Plans / Questions… We hope 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). And we can talk about the Transfer process from Statements of SEN to EHC Plans - all are due to be completed by end March 2018 – at which point the Statement of SEN ceases to be a legal document. We are happy to take your questions on this, and seek answers from direct Achieving from Children (providers of children’s services for Kingston & Richmond). Thursday 22nd June - 7pm to 9pm at The Strada, Griffin Centre, Kingston, KT1 1JT Thursday 29th June - 7pm to 9pm at the Petersham Hotel, Nightingale Lane, Richmond, TW10 6UZ


Parent/Carer meetings on CAMHS experiences Meet the Commissioners (CAMHS = Children & Adolescent Mental Health Services) Following the national news on the proposed decision to cease diagnosising austim locally (unless there was already a presenting mental health need), we have arranged meetings with the Clinical Commissioning Group (CCG) children’s commissioners. Parent representatives will facilitate the meetings; accompanied by either one or both of the CCG Childrens Commissioners (from Kingston and Richmond). For some of the meetings, we have additional guests from the National Autistic Society (NAS) Head Office, or NHS England. Details below...

Dates & Venues You MUST book a place to attend – see details against each meeting date. Monday 19th June - 10.30am to 12.30pm at Express CIC, 452 Ewell Road, Surbiton, KT6 7EL Additional guests: A Nicholson- NAS Area Policy and Participation M Banda - Regional Strategic Case Manager (London), LD & Autism, NHS England W: https://www.eventbrite.co.uk/e/express-cic-coffee-morning-meet-the-commissioner-19thjune-2017-tickets-35005871504 E: info@express.org.uk Wednesday 21st June - 7pm to 9pm ADHD Richmond, at the offices of Russell Cooke, Kingston upon Thames E: communications@adhdrichmond.org Friday 23rd June - 10.30am to 12noon at MeToo&Co, The CrossWay Centre, Twickenham, TW1 2PD * E: sendfamilyvoices@outlook.com T: 07469 746 145 Thursday 13th July – 10am to 12noon with NAS Richmond, at York House, Richmond Road, TW1 3AA Additional guest: E Ruddy - Strategic Programme Manager (Transforming Care) - NHS England E: sendfamilyvoices@outlook.com T: 07469 746 145 * crèche available at meetings hosted by MeToo&Co. Please contact: 07946 646033 or email: info@metooandco.org.uk to book a crèche place.

CAMHS – a stronger voice SEND Family Voices, as the ‘official’ parent/carer forum for Kingston & Richmond, have also arranged a meeting with the other 3 borough’ parent/carer forums affected (Wandsworth, Sutton and Merton). We’ve also invited the autism support groups within each borough. The intention is that we work together to agree a common aim, outcome and a stronger voice on behalf of famliies. Please contact us for more information: sendfamilyvoices@outlook.com

@SENDFamilyVoice @SENDFamilyVoice Our followers list is growing by the day and we've been busy tweeting all week. There is so much information out there and so many incredible blogs. EHCPs & living across two boroughs:


https://someonesmum.co.uk/2017/06/16/i-will-not-let-broken-system-break-little-boy/ The power of good community nursing https://naomiflemingwordpress.wordpress.com/2017/06/16/community-nursing-and-thepower-of-perspective/ ASD work experience opportunities: https://do-it.org/opportunities/b3468caa-93a9-4c74-bd2f-026237ec6cca and https://www.ambitiousaboutautism.org.uk/our-current-opportunities Why employ ASD employees? A fabulous report from Autistica & the University of London http://crae.ioe.ac.uk/post/161851143988/sometimes-you-just-need-someone-to-take-achance Relationships and sex are an important part of life, including for those with learning disabilities https://www.mencap.org.uk/advice-and-support/relationships-and-sex What to do/know when CAMHS can't help http://yvonnenewbold.com/what-do-you-do-when-cahms-cant-help/ Powerful blog on tube feeding http://community.fireflyfriends.com/blog/article/will-she-always-have-thattube#utm_source=Blog&utm_medium=Social&utm_campaign=will-she-always-have-thattube&utm_content=will-she-always-have-that-tube Annual health checks for people with learning disabilities: https://ldcop.org.uk/annual-health-checks-people-learning-disabilities-step-step-toolkit-royalcollege-gps Guide to the Mental Capacity Act & Supported Living https://councilfordisabledchildren.org.uk/transition-information-network/resources/mentalcapacity-act-2005-and-supported-decision-making?platform=hootsuite

You Said – We Did – on the Local Offer This is a summary of all comments, questions and feedback sent to the Local Offer. There is a statutory (legal) duty to publish this and the responses… https://www.afclocaloffer.org.uk/pages/home/find-out-more-about-the-local-offer/you-saidwe-did-may-2017

Sparkle Time “If you have a child aged 2-5 and you feel you would like some support with their behaviour, language, concentration, social and emotional and/or physical needs then come along to our drop-in group. Time to Sparkle sessions are a stay and play group with a difference, as the group is small and tries to meet each family’s needs. We would be very happy to meet you and support both you and your child.” https://www.afclocaloffer.org.uk/events/24456-time-to-sparkle?date=2017-06-26 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


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