Gold, Phyz, DfE & always more… 15th September 2017 Dear All Bit of a Phyz special this time (Phyz = physical disabilities). Plus, some reassuring news from the Department of Education (DfE)…
The Golden Binder and Golden Booklet – your reviews please Process Governance Review The twice-yearly review of the contents of the Golden Binder and Golden Booklet (also known as GB Process Governance Review), will take place on Friday 29th September. If you have any comments, queries or suggested changes to anything in the Golden Binder or Golden Booklet, please send them to Penny, our SEND Family Voices Lead for all things Golden Binder shaped. Penny can be contacted at Penny@sendfamilyvoices.org Here is the links to the Golden Binder and Booklet on the Local Offer: https://www.afcinfo.org.uk/pages/local-offer/information-and-advice/assessment-andeducation-health-and-care-planning/golden-binder-needs-assessment-education-healthand-care-plans-ehcp-processes-guidance-forms-and-templates
Changing Places #1 and #2 #1. Review of wheelchair services You may be aware that NHS England are conducting a review into wheelchair services, and the issues around the inconsistency and lack of suitability of provision in many place (this means some people have nowhere to go to the toilet!) Elissa Metzgen - a member of the Phyz group - has been asked to participate in a consultation on wheelchair services and would be interested to hear from anyone who has experience with getting / trying to get a wheelchair through wheelchair services. In particular, Elissa is interested in… 1. Wheelchair service issues (good and bad) 2. Thoughts about the commissioning policies - esp regarding active wheelchairs for children (the current CCG policy is based solely on physical capability but ignores whether the child will be lifetime user and ignores mental health needs (especially regarding independence), ability to have two wheelchairs (eg electric for school and manual for home); integration of physio and Occupational Therapy into wheelchair selection / set up), suitability of power chairs provided 3. Thoughts about maintenance service provision 4. Any experiences with rehab wheelchairs needed post-surgery, or adaptations to existing wheelchairs (eg. leg-raisers) and whether these have been made available through wheelchair services and if not, how you have managed? Please send your thoughts on these or any other issues relating to wheelchair services to Elissa on emetzgen@gmail.com by September 27th (in preparation for the consultation meeting the next day). If you can, please let Elissa know in which local authority you are resident.
#2. Changing Places - proper disabled toilets Phyz (with SEND Family Voices’ support) are campaigning to get a Changing Places toilet put into Kingston town centre - there isn’t one in either Kingston or Richmond. For people with limited mobility or continence issues, these toilets are a lifeline to independence! If you would like to support our efforts to make this happen, please contact Phyz on info@phyz.org.uk with a brief email stating that you support the campaign to install a changing places toilet in Kingston (and why you support this campaign) "Over a 1/4 million people need Changing Places toilets to enable them to get out and about and enjoy the day-to-day activities many of us take for granted. http://www.changing-places.org/ The Changing Places Consortium launched its campaign in 2006 on behalf of the over 1/4 of a million people who cannot use standard accessible toilets. This includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, as well as older people. To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist. You can download our campaigns leaflet for more information." Total toilets available = 1033 (is that enough - nationally?) http://changingplaces.uktoiletmap.org/
More about Phyz “Phyz is a local support group for parents of children and young people with physical disabilities in South West London. We are a group of local parents with children/young people with physical disabilities who feel that there is a need for a place (both face to face and virtually) where we can meet and chat and support each other. Children with physical disabilities and their families have a particular range of things to deal with - and we felt that a way of connecting families and sharing experiences would be useful. We meet every 4-6 weeks for coffee and chat on a Friday morning, and from time to time in the evening at the pub. We aim to support each other with our own knowledge, to create shared knowledge, such as our list of appropriate local leisure activities, and we also aim where we can to influence service provision to better serve our children. Joining the email group means that you are in touch with everyone in the group through the group email address and will mean that you receive information on any events that we organise. To find out more or to join our group please e-mail us at info@phyz.org.uk or come along to our next meetings: Friday 13th October - 10:00 to 12:00 and Friday 24th November - 10:00 to 12:00 Me Too and Co at The Crossways Centre, East Twickenham, Richmond Road TW1 2PD
Penny, Stacey and Sylvie “ info@phyz.org.uk
Hydrotherapy “MeToo&Co are pleased to announce that we are offering a fifth course of hydrotherapy to families have children with complex physical needs. We have booked exclusive use of Teddington Hydrotherapy Pool on Sunday afternoons for a 7 week course, mainly aimed at children with Cerebral Palsy and other physical and mobility difficulties.” https://www.metooandco.org.uk/activity/40/hydrotherapy
How to raise a resilient child From Homestart in Hounslow, Kingston & Richmond “Have you ever wondered what we need to be doing as parents and carers to ensure that our children grow up to be happy, resilient adults with a zest for life and learning? Dr Kathryn Weston has all the answers and looks forward to sharing her practical and straightforward tips, derived from the best research evidence.” Tuesday 10th October, starting at 7.30pm Surbiton High School, 6th Form Common Room For more information, please go to: http://www.homestart-richmond.org.uk/2017/09/parenting-talk-how-to-raise-a-resilient-childbuilding-your-childs-mental-health-and-happiness/
Disability Awareness Card (this was the I Count card in Kingston) “Disability Awareness cards were introduced in response to feedback from disabled people and parents of children and young people with disabilities who didn't want to carry the paperwork proving they were entitled to some form of disability benefit, in order to obtain a concessionary rate, support or extra assistance at venues such as fast tracking at a theme park” https://www.afcinfo.org.uk/pages/local-offer/information-and-advice/social-care/identitycard
From the Department of Education (DfE) - SEND Welcome to the September 2017 edition of the 0-25 SEND Newsletter. You can find the full newsletter here – and we highlight a couple of points of interest below http://www.sendfamilyvoices.org/send-ofsted/
#1 Transport Accessibility Action Plan “The Department for Transport has published a Transport Accessibility Action Plan consultation (closes 15th November): www.gov.uk/government/consultations/draft-transport-accessibility-action-plan. The consultation seeks to understand what more needs to be done to improve transport accessibility and ensure that people with physical and hidden disabilities (including autism, mental health conditions, dementia) have the same access to transport and opportunities to travel as everyone else.”
#2 Letter to local authorities from Robert Goodwill MP, Minister of State for Children and Families We feel this quote is of particular importance to families who are concerned regarding the transfer of Statements to EHC Plans: “It is also important to note that any statement of SEN for which a transfer review has not been completed by 31 March 2018 will continue to remain in force from 1 April 2018, until a transfer review has been completed and a decision is made about future provision. This ensures that children and young people who have statements, for which a review has not been completed by 31 March 2018, do not lose support. For these children and young people, local authorities will remain responsible for ensuring that provision in their statements is met.”
Kingston Mencap – new venue and open day “Kingston Mencap invites you to attend the official opening of the Searchlight Community Centre, the new home of Kingston Mencap. Saturday 30th September 2017 at 12pm – 3pm The Searchlight Community Centre, Kingston Road, New Malden, KT3 3RX Several local charities and organisations will be showcasing their work with musical performances by local artists. Please rsvp by 21st September via email to peter@kingstonmencap.co.uk
News from the Local Offer “October half term We have added a search button in the What’s On calendar which will allow you to see at a glance what is happening during that week. https://www.afcinfo.org.uk/local_offer/events
Feedback on the Local Offer We continue to receive feedback via the “Feedback Faces” on the website and thought it might be useful to provide a sample with our responses (we can’t reply individually due to feedback being anonymous.)
You said: The animated film is amazing! However, it would be more beneficial for the local Autism community if short films, or some other relevant form of media, could be introduced which show real life people (including Autistic children/young people/adults; parents, carers and local support leaders such as Express) talking about their own experiences of Autism or how they help others. Being able to see more variety of real life people speaking on the SEND Local Offer would be so helpful!
We did: We agree. We will be discussing this at our next Local Offer Development Group in October. We have a mixture of interested parties, including professionals, young people’s representatives attending, including Express who have kindly offered to host at their offices in Tolworth. Biscuits are on us!
You said: About the Directory search - Can't display more than 10 organisations at a time. If you select display 100, it reverts to all organisation (700+) rather than just the 61 leisure/social activities.
We did: We asked our website designer to improve this.
You said: Information complicated. Not accessible. No attempt made to make this information accessible to people with disabilities.
We did: This is a difficult one. Those involved in the early design of the Local Offer will know the discussions we had about how much detail families wanted and how to balance this with providing accessible information. We know this is an ongoing challenge but it may be helpful to point out: • Accessibility features have been improved on the Local Offer since the relaunch. You can view them here https://www.afcinfo.org.uk/accessibility We know they are a bit hidden (at bottom of pages) so we will get them moved to a more obvious place if we can. • We have added a text to voice function • A collection of accessible information for young people will be growing in the Young People’s Hub – you can view the section here https://www.afcinfo.org.uk/pages/local-offer/information-and-advice/youngpeople-s-zone/our-advice-area
You said: Good website but smiley faces don't work on some mobile devices.
We did: We asked for this to be sorted.
You said: Clear design. Good use of pictures and colour. Much more visually appealing than the old site. To make it even better, maybe different ways of making the site more interactive could be considered. I've heard good things about a software called Prezi.
We did: Thank you ! Prezi may not work for us but we are exploring ways of making the site more interactive or animated. “
#StopSleepInCrisis 2.33 minutes – and a petition (remember our children will grow up) The future care of the 178,000 people with a learning disability who rely on sleep-in support is uncertain. Joanna Lumley, Kit Harington, Jodie Whittaker, Jo Whiley, Mathew Horne and Kate Spicer join our video appeal to protect future care of people with a learning disability. https://www.youtube.com/watch?v=cmdi95EGhWs&utm_source=adestra&utm_medium=e mail&utm_campaign=weeklyemail&utm_content=video
The jolly bits at the end… A County Down company is making a major TV series with a difference - its central character and cast are all on the autistic spectrum. http://www.bbc.co.uk/news/uk-northern-ireland-36927463 Jenny's Happy Little Helpers make shopping easier for autistic kids http://your.asda.com/community/happy-little-helpers 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