Nuggets, Reports & Useful Tweets 30th October 2017 Dear All Over half term, there seemed to be a lot of newsletters and reports published at the same time. First off, a reminder about EHC Plans and a chance to meet other parents…
EHCP Transfers – first workshop this Friday Are you going through or are you about to go through the process of transferring a statement to an EHCP? Can we help? To help families to help themselves we are running a series of workshops / open meetings to help you understand the process, what you can do to ensure that it goes as smoothly as possible, and what to look out for. We will also explain the jargon: “trigger letter”, “transfer review meeting”, “preparing for adulthood” being just a few that have been causing confusion recently. The first of three workshops is this Friday (see our events page for more dates) Friday 3rd November - 10:00am to 12:00noon at Winter Garden, York House, Richmond Rd, TW1 3AA If you are able to register attendance that would be helpful, but feel free to just turn up. E: events@sendfamilyvoices.org
Real Snakes and Fantasy Ladders Accessing Public Services Toolkit: A problem-solving approach Our first example of a nugget… Cerebra produce some really good easy-read resources. This guide includes Myth-busting and example letters, and we’ve put a copy onto our website, here: http://www.sendfamilyvoices.org/useful-documents/ The guide “aims to support disabled people and carers, as well as their families and advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. UK law provides powerful rights to such support services, but this alone is insufficient. The law can be complicated and difficult to understand. …. This guide aims to help unpick these problems, to develop effective strategies for resolving them and to keep your blood pressure within safe limits.”
A bit more about Cerebra: “Families where a child has a brain condition face challenges every day. Just to learn, play, make friends and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome. So, we listen to families, we learn from them. We carry out research, we design and innovate, we make and share.” http://w3.cerebra.org.uk/ Take a look at the Cerebra website; current new items include:
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Books on ADHD in the library My Experience of Applied Behavioural Analysis Impact of Headbanging and Sensory Issues on Sleep Support for Global Developmental Delay
Nuggets from the CDC CDC = Council for Disabled Children The CDC Autumn Digest has just been published. There’s always a lot in these digests – you can find the big news as well as smaller jewels of information. The full digest is here: https://councilfordisabledchildren.org.uk/help-resources/resources/cdc-digest-autumn2017?mc_cid=cede79777b&mc_eid=7dbeace220 On page 23 we found this nugget…
How is the NHS structured? How does the money flow? This NHS organogram and video explains how providers are regulated and commissioned, and how the money flows. Two slides and a video – still complicated though! https://councilfordisabledchildren.org.uk/help-resources/resources/how-nhs-structured Page 10 details this conference in January…
Statutory Sex and Relationships Education (SRE) – getting it right for disabled children and those with SEN. This is a difficult area for all families - and our young people go through adolescence and self-discovery like any other teenager. The feedback we have is that parents and carers are keen to be proactive, rather than reactive. We’re pleased to say that one of the SEND Family Voices team will be attending and we’ll share our findings after the event.
It’s harder than we thought The SEND Reforms (Sept.2017) promised so much – and the spirit behind the SEND Reforms is still good (place the child or young person at the centre of decisions about their care – instead of talking about ‘them’ as though they weren’t there). But to make this happen is proving hard. We can surmise why, and the answer will be multi-faceted. This is a report from the Local Government and Social Care Ombudsman… “Families of children with special educational needs are sometimes facing a “disproportionate burden” to ensure they get the support they need. The report looks at the common issues seen by the Ombudsman in its first 100 investigations into complaints about the new Education Health and Care (EHC) Plans, which were introduced in 2014 to replace Statements of Special Educational Needs (SEN). The new system was designed as a more holistic way of providing SEN support for children. It is supposed to make it easier. But in reality, for some families it is not.” http://www.lgo.org.uk/information-centre/news/2017/oct/a-disproportionate-burdenfamilies-struggling-with-new-special-educational-needs-system-when-councils-get-it-wrong
Appealing Health & Social Care (not just Education) With thanks to Special Needs Jungle for their article: “When you appeal to the First-tier Tribunal (FTT) SEND Tribunal about an issue surrounding a child or young person's Education, Health and Social Care plan (EHCP), problems with the health and social care aspects cannot be dealt with. They have to go through separate
complaints processes, something that is not only illogical but causes a great deal of additional stress for families. To start to explore a single route of redress for EHCP appeals, the SEND Tribunal last year ran a very limited trial involving just 17 of the 152 local authorities. It enabled judges to hear appeals about health and social care and make non-binding recommendations for the latter two as well as its directions for education issues. However, you must have an education issue to appeal as well as health and/or social care, you cannot appeal for just the latter two. The trial had an overwhelmingly positive response and was evaluated in the comprehensive CEDAR report published in March 2017. However, perhaps unsurprisingly, it was decided that because the trial was so small, insufficient evidence had been gathered to decide whether to make it a national, permanent feature of the SEND Tribunal. Robert Goodwill MP Minister of State for Children and Families has now announced that the trial will be extended to the whole of the England. The trial will begin in March 2018 and will run for two years.� You can read the full SNJ article here: https://www.specialneedsjungle.com/send-tribunal-to-extend-trial-ruling-on-health-andsocial-care-issues/ And we have uploaded the Robert Goodwill MP’s letter to our website here: http://www.sendfamilyvoices.org/send-ofsted/
@SENDFamilyVoice Lots of very interesting stuff on Twitter this week - here are just a few things that caught our eye: Victoria Derbyshire looks at extreme challenging behaviour https://www.bbc.co.uk/news/amp/education-41597815 Mum power: Disney to finally install Changing Places https://ordinaryhopes.com/2016/10/27/disney-will-be-magical-again/amp/ How to design hospitals for complex needs: http://www.lucy-watts.co.uk/2017/10/accessibility-complex-needs-hospitals.html?m=1 Helpful list of resources to support CYP with mental health issues https://www.westlothian.gov.uk/media/10904/Healthy-Reading-West-Lothian/pdf/HealthyReading-West_Lothian.pdf A snapshot of Pathological Demand Avoidance Syndrome https://lovepda.wordpress.com/2017/10/27/snap-shot-of-pathological-demand-avoidancesyndrome/amp/ Very interesting survey findings on 'unschoolers': home educating without the National Curriculum http://thinkaboutnow.com/2017/10/first-survey-grown-unschoolers-findings-showextraordinary-results/ 26 apps for ADHD minds
https://www.additudemag.com/mobile-apps-for-adhdminds/?utm_source=facebook&utm_medium=social&utm_campaign=adult Friends who have siblings with Down's Syndrome have much to celebrate: the Listening Project http://www.bbc.co.uk/programmes/b09b19ys Parent meet for children with a condition that affects their appearance: https://changingfaces.org.uk/adviceandsupport/parents-lunch-n-meet Mobility allowance for under 3s being considered at last http://www.bbc.co.uk/news/av/uk-england-devon-41697933/mobility-allowance-for-under3s-under-review Hickies shoelaces - turning all lace-up shoes into slip-ons https://uk.hickies.eu/?utm_campaign=UK_25-65_Mixed_NFM_Asd_oCPMPur_103EM&utm_source=facebook&utm_medium=ocpm Fears and dreams of life-limited children http://www.bbc.co.uk/news/av/health-41769478/the-hopes-and-fears-of-young-peoplefacing-life-limiting-conditions Living with life-threatening epilepsy https://hannahmeandinvdupdel8p.wordpress.com/2017/10/27/living-the-storm/amp/
The Kindness of Strangers Autistic people in public are too often met with judgmental stares and remarks. These recent news stories demonstrate what a difference it makes if we show a little kindness instead. https://www.theguardian.com/tmi/2016/apr/15/living-with-autism-eight-heartwarmingstories-about-the-kindness-of-strangers?CMP=share_btn_link 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