Transition through school

1. Transition through school Rosanne Diaz, Information, Care and Advocacy Manager r.diaz@muscular-dystrophy.org 0207 803 4802

2. Different types of transition

3. Transition through schools– things to consider Plan ahead Educate the school/university/college – health professionals can help Once statemented – Local Education Authority is obliged to provide funding/resources to enable the statement to be fulfilled. Yearly statement review – can ask for a review if things change If not on a statement, School Plus/Action Plans can be put into place to provide support required Small steps may be needed at every stage of transition – keep in touch with school as aspects of the condition change and more support is needed Understand the support changes from primary to secondary – e.g. physiotherapy in school hours Smooth transitions will: Foster independence Friendships Networking Raise aspirations and opportunities Raise awareness within schools and pupils

4. Which school to transition into The choice of school At each transition stage of a school career there will be choices to make about the type of school Mainstream or special, day or boarding, local or further away, with siblings (with better facilities)? Choice should be based on: individual child and the wishes of the family practicalities such as the physical layout of local schools and whether they can be adapted to meet a child’s needs any learning disabilities or behavioural difficulties In some cases a child may feel more comfortable and better supported in a special needs school An active choice that is made after assessment and discussion, and not an assumption by parents, teachers or the LEA When EHCPs are rolled out in September 2014 – families will be given more choice in terms of schools chosen Key: LEA: Local Education Authority EHCPs: Education Health and Care Plans

5. Education Health and Care Plans • - Available in piloted regions – ask CAs, school or LEA to find out if this applies to you • - from birth to age 25; • - from Sept 2014 rolled out everywhere • - already on SEN statements – gradually rolled over to EHCPs within 3 years • From when you are issued with EHCP – will focus on needs now – but also future goals and aspirations. School can be liable if goals aren’t reached as a result of needs agreed to in EHCP haven’t not been followed • If university degree takes you to greater than age 25, or courses are part-time? • SEN only covers up to age 18/20 – as long as child is in high school education – not further education • Designed to increase co-operation with services needed for an individuals “whole” support – holistic delivery of needs provided by educational services with input from social services and health professionals • Family are more involved in putting the plan in place • Can appeal at stages • Process is meant to be quicker – we will see! • This is a new process – so a lot of this is still only theory! New Statementing Process

6. Not happy with the EHCP? Contact our Advocacy team! Simon Dadd, whose son Thomas has Duchenne muscular dystrophy and is 8years old, said: “There's no doubt that the excellent support we had from the Muscular Dystrophy Campaign was a major part of our success without needing to go through the stress and time of a Tribunal hearing.  The advocacy team were very careful to listen to our concerns and provide clear and unbiased advice.  We're very grateful to them and would recommend that anyone facing issues accessing the services or protections [EHCPs] that they are entitled to make contact with them.” 0800 652 6352 (freephone)

7. Funded by social services and health authority for out of school hours • Funding for medical needs when in school – will come from LEA funding – but has to be agreed during the statementing process • Medical needs should be placed firmly in the EHCP – and will move with you/your child with school to school • Ensure that the team in school can address any health needs safely, e.g. respiratory support • Insist on further training if needed, or emergency review of statement to “up” provision Care needs within school

8. Disabled Students’ Allowances (DSAs) - are paid on top of your other student finance and don’t have to be repaid. Can be used for higher education transport • Motability - Needs DLA or PIP (at the enhanced rate for mobility) • Re-used motability cars – can be an option for parents with young children with only mobility component of DLA • Access to work schemes • ESA – employment support allowance • Please ask for our Advocacy pack for more information Access to higher education/employment

9. Shared experiences and resources Ben's story - Transition from Primary to Secondary school: https://www.youtube.com/watch?v=ThiyMCoWQLw Takin’ Charge – developed byyoung adults living with Duchenne Muscular Dystrophy: http://www.decipha.org/transition/programme/takin-charge Overview of EHCPs – written by Muscular Dystrophy Campaign advocacy team: http://www.muscular-dystrophy.org/get_involved/campaigns/campaign_news/7447_reforming_the_special_educational_needs_system_education_health_and_care_plans Access to Higher Education Trailblazersreport: http://www.mdctrailblazers.org/assets/0000/9705/University_challenge2013Updated.pdf Education factsheet, Muscular Dystrophy Campaign: http://www.muscular-dystrophy.org/assets/0002/2704/Education.pdf TalkMD – Parents Education Network: http://www.muscular-dystrophy.org/news/5126_bringing_parents_together to register contact Rosanne – r.diaz@muscular-dystrophy.org. 0207 803 4802 My Life Changing Work Experience – blog by Trailblazer Shaz Hossain: http://www.mdctrailblazers.org/blogs/1388_my-life-changing-work-experience

10. Thank you for listening Time for your questions! r.diaz@muscular-dystrophy.org