Support at School Education Duchenne Muscular Dystrophy Andrea

Support at School- Education & Duchenne Muscular Dystrophy: Andrea Russell Neuromuscular Care Advisor, East of England Neuromuscular Service, Addenbrooke's Hospital Andrea. russellscg@nhs. net

Navigating Education

Preparing • Get help to talk to school, NMCA Therapists. • Provide essential/supporting information, alert card/care plan. • EHCP may not be indicated initially but pupil should have Individual Health Plan especially if on steroids. • Keep copies of all reports. • Chronology is useful

Communication • Agree how you are going to communicate with school on daily basis. • Don’t allow negative hand over at end of day. • Take supporter to meetings if needed. • Share what your child knows and the language you use at home to describe DMD. • Share what you have told siblings.

SEN Support and EHCP • SEN support provision within school to meet needs. • Additional learning and behaviour support may mean EHCP indicated sooner if not making progress. • EHCP assessment process should begin if need can not me met with SEN Support. • School has to demonstrate they have “taken relevant & purposeful action to identify , assess and meet needs or that pupil has not made expected progress. ”

The Special Educational Needs & Disability Code of Practice 0 -25 yrs. The Code identifies four broad areas of need: Communication and interaction; Cognition and learning; Social, emotional and mental health; Sensory and/or physical needs.

SEND Support for Parents • www. ipsea. org. uk • LEA Send webpage and local offer page. • www. cafamily. org. uk • www. councilfordisabledchildren. ork. uk • www. nnpcf. org. uk

Further Information • MD UK Inclusive Education; A Guide for Schools and Families. • Special educational needs and disability; A Guide for Parents and Carers Do. E August 2014 (www. gov. uk) • 0 to 25 SEND code of practice; A Guide for Health Professionals Do. E and Do. H September 2015. • Do. E Supporting Pupils with medical conditions Do. E Feb. 2014 • IPESA EHC Plan Checklist April 2015 (www. ipesa. org. uk)

Funding • Core: is an amount of money given for each pupil in the school and is often referred to as AWPU (Age Weighted Pupil Unit) acceptance that this amount can be around £ 4, 000. • Notional: The amount in this budget is based on a formula which is agreed between schools and the local authority. The government has recommended that schools should use this notional SEN budget to pay for up to £ 6, 000. • High Need: is ‘top-up’ or ‘high needs’ funding. School ask the local authority to provide top up or high needs funding to meet the cost of that provision.

Moving on • Therapy team/NMCA at meeting as education staff may not understand your child's future needs. • 12/18 months lead time if major works needed, visit early with an OT. • Use MD UK Education guide for specifications. • The child visiting senior school maybe very different when he arrives at school 12 months later. • Bigger campus : may need to use power chair at school before in regular use at home.

Making Best Use of IT • Keep on the agenda even if not seen as an issue. • Ensure IT needs identified on EHCP has specialist input/assessment. Requires insight in to future needs. • Boys can be resistant to using technology in classroom if they are made feel “special”. • There are more mainstream solutions now.

Further Advice • www. acecentre. org. uk for complex access. • www. abilitynet. org. uk including My Computer My Way • Product specialists/suppliers

Exams • Examinations plan well ahead for full exam timetable • Senco should apply for additional time and rests breaks; boys need to get used to this. • A levels ask for a overnight supervision if 2 on one day. • Need to be using IT on regular basis in curriculum for approval in exams • Consider extra year in 6 th form to spread workload

Friends • To build friendships children need to share adventures, risks, triumphs and failures. • Always having an adult present alters the dynamic it needs a light touch. • Children have an awareness of their long term differences around age of 7. Give them skills and support to talk to friends. • Being bullied – Act early it will not “blow over” work with school policy. • Bullying usually related to loss of function and going in to power chair

Odds and Ends • Plan early if surgery likely, consider phased return keep links with class while recovering. • Good lightweight manual chairs can be useful for trips and visits to friends houses. Outside school - consider disability sports, taster sessions useful. Basket ball, wheelchair football, boccia, table cricket etc.

Play time and school trips • School trips, when, where, who and how. Ask at beginning of each key-stage and year. • School may need to change venue. • Cost, care and transport issues; resolve early. • Pacing at play time needs staff support. • Fatigue at end of day inform school. • Have clear rules for introduction of power chair: speed, lap belt , have school mode on chair.

Skills for Adult Life • • • People management Budgeting Social skills Relationships Resilience • Decision Making Care Teams Personal Budgets Pacing Maturity Bereavement/Trials and Tribulations • Medical/Personal/Social • • •

Thank You