Supporting Children and Young People in Education Webinar

Supporting Children and Young People in Education Webinar for Parents and Carers 8 th October 2020 1

Welcome & Introductions Overview • Introduction to new Booklet for Schools and Colleges and outline of how it should be used • Outline of resources available • Introduction to SEND provision in schools and tips for parents advocating for their child/young person. • Q&A Panelists • Liz Loughery: Office Manager • Tonia Hymers: Service Manager • Angela Scudder: Patient Liaison Officer • Rebecca Perfect: Parent Advisor. BBS UK Webinar 08/10/20 2

Q&A Session • There will be an opportunity for you to ask the panel questions at the end of the webinar. Specific questions relating to individual circumstances will be answered on a 121 basis outside of the webinar. • To raise a question please use the Q&A function. This can be accessed via the control panel at the bottom of the screen. • You can post your questions in the Q&A window anytime during the webinar and we will try to cover as many as we possibly can. • The panelists will be available afterwards to answer any further questions should you have them. BBS UK Webinar 08/10/20 3

BBS UK Booklet for Schools & Colleges • New resource developed to support those working with children and young people in a learning environment • Booklet produced in response to the needs of our young members • Not feeling confident explaining BBS • Being repeatedly asked about BBS • Lack of understanding about BBS amongst their support team • We asked our young members, ‘what do you think your teachers need to know? They need to know all about the syndrome and need to know how to keep me safe. BBS UK Webinar 08/10/20 They need to actually know what it is, none of them understand how it affects me. 4

Development Process • Who contributed to the booklet? • Children and young people who have BBS • Experienced/exemplar SENCos, Teachers & LSAs • BBS Clinics Team • How? • Young People’s Meetings held at Conference and Activity Weekends; quotes and pictures throughout • Two review stages BBS UK Webinar 08/10/20 5

Supporting Self-Advocacy üGo through the booklet with your son/daughter, we want them to feel comfortable with passing it on to their support team at school. üSupport them with completing ‘All About Me’ – use pictures and extra paper if needed. üParents can complete a copy too. üAsk to see the final Student Passport and check your child is happy with it. üCheck the passport is being used! BBS UK Webinar 08/10/20 6

Supporting Self-Advocacy (Cont. ) My Life, My Future: A young person’s guide to living their life with Bardet-Biedl Syndrome: ü Knowing about my Medical Condition ü Speaking Up For Myself ü Health, Relationships and Lifestyle ü Emotions ü Keeping Safe ü Planning My Future BBS UK Webinar 08/10/20 7

Supporting Parents • Information Leaflet: SEN Support & EHCP • SEND provision • EHCP, what it is and how to apply • Parent Advocacy and Engagement • Involving Young People in Decisions • Website: Knowledge Hub • Useful organisations/publications/information • Webinar: supporting your child in education BBS UK Webinar 08/10/20 8

SEND Support • The SEND Code of Practice says that schools should use a 'graduated approach', or four-part cycle (Assess, Plan, Do and, Review) to support your child with SEN. This means that the SENCO and teaching staff should: o o Analyse your child's difficulties Identify the extra support your child needs Put the support in place Regularly check how well it is working so that they can change the amount or kind of support if they need to. • The school can ask specialist support services, for example, educational psychology, behaviour support or speech and language therapy to carry out assessments and provide further advice and support if necessary. BBS UK Webinar 08/10/20

What is an EHCP? • An EHCP (Education and Health Care Plan) is a document which sets out the education, health and social care needs of a child or young person (0 -25). • The child/young person will need more support in an educational setting than is available through SEN support. • An EHCP was formerly known as a ‘statement of special educational needs or ‘Statement’. • Not every child/young person with BBS will be given or require an Education Health and Care Plan. BBS UK Webinar 08/10/20

How to Apply If your child’s school is supportive, they may start the EHCP process for you, but you can request an assessment by contacting your Local Authorities Special Educational Needs (SEN) Department. A young person can request an assessment themselves if they are aged 16 -25. What Happens and When? • Week 0: Written request for EHC Needs Assessment made to Local Authority. • Week 6: EHC Needs Assessment begins. Local Authority must gather evidence about the person’s needs, required provision and outcomes expected. BBS UK Webinar 08/10/20

How to Apply (cont. ) • Draft EHCP issued to the parent or young person. The parent or young person has 15 calendar days after receipt to: o review the plan o ask for a meeting with Local Authority officer to discuss any concerns o tell the Local Authority which type of school/college (mainstream or special) they would like and the name of their preferred school/college • Local Authority to consult with the preferred school/college which should respond within 15 days • Week 16: If, after having carried out the EHC Needs Assessment the Local Authority decides not to issue an EHCP, it must notify the parent/young person in writing, providing the right to appeal. • Week 20: Final EHCP issued! BBS UK Committee Meeting 23/10/2021 12

General Points & Tips • Think about key transition dates (i. e. primary to secondary to college) a year before the deadline. START EARLY! • BBS Clinic Reports are invaluable – consider whether your child may be transitioning before your next appointment. • Be a strong advocate: build/maintain local relationships within education and health. • The EHCP is a legal document – avoid vague and unenforceable words and terms including: ‘should’, ‘regularly’ ‘when required’ ‘would benefit from’. • Use quantities, i. e. number of hours, frequency of support, and type of support required. • Social media and local parent groups can be a good source of local knowledge and provide insight into ‘local and national challenges’, funding issues and so on. • The EHCP must be reviewed once a year, however you can call a review at any time if the current support is not meeting your child’s needs. BBS UK Webinar 08/10/20

Any Questions? We’re happy to help! www. bbsuk. org. uk admin@bbsuk. org. uk Panelists: Liz Loughery: Tonia Hymers: Angela Scudder: Rebecca Perfect: liz. Loughery@bbsuk. org. uk tonia. hymers@bbsuk. org. uk angela. scudder@bbsuk. org. uk rebecca. perfect@bbsuk. org. uk 07421 312731 07591 206680 07591 206788 07543 165804 BBS UK Webinar 08/10/20 14