The new Code of practice for Special Educational needs now covers young people up to adulthood (0-25 years). If you have a rare medical condition like Duchenne muscular dystrophy your special needs statement will be converted to a new Education Health and Care Plan in the near future.
Some things to remember as you go through this process:
"Local authorities must consult children with SEN or disabilities, their parents, and young people with SEN or disabilities in reviewing educational and training provision and social care provision and in preparing and reviewing the Local Offer." Code of Practice 2014
So you must be consulted at the very beginning of the process. At Decipha we have been recommending a Person Centred Planning approach that starts with a session led by the young person and family members. This is your chance to tell everyone about your dreams, hopes and aspirations for the future. For the young person to describe what they like doing, who their friends are and what they might want to do as they get older. Use pictures, video clips and powerpoints. Make it personal make it powerful.
It is important to consider skills that the young person might need as they progress to adulthood and employment. Reading? Maths? Qualifications? Work Experience? And yes its never too early to start planning and working on lagging skills.
What arrangements do you have now or might want for independant living in the future. Housing for disabled people can be a big problem so start planning early on. Who can help?
What health care is being provide by Expert Centres and how is this being translated to a local level. eg Is your local physiotherapist in touch with expert Centres and do they provide hands on training? Who is paying for a ventilator?
What services do your Local Authority offer (Local offer) and how can your family access activities and events in the local comminity? How can your child improve on building up friendships and how will adults build up useful life networks.
These are the OUTCOMES that should be written into your EHC Plan. Your outcomes will bring resources to help to provde support. There will be a new funding body in your area that will have to find resources from health, education and social services budgets to make sure you can achieve the outcomes you want.
My advice would be to make sure you have a good independant facilitator to help you to write the best plan and identify key outcomes. When will your plan be reviewed and outcomes updated? Don't leave it for a year.
Coproduce your plan with the professionals involved with your family and get all the expert advice that you can to produce meaningful outcomes.
The Code is an opportunity to produce an exciting and relevant Roadmap for Life Plan but young people and families will need to be in the driving seat and in many cases still play some of those old broken records!!