If you and your parents, or your school or health care team think that you need more support than it’s reasonable and usual for your school to provide, any of you can start the ball rolling and request an assessment for an Education, Health and Care Plan (EHCP).

The sort of thing that may trigger this would be, for example, if your mobility round school is getting more challenging or you’re having difficulties with things like getting changed for PE, writing, turning pages or managing a keyboard.

If this is something you or your parents think you need, the pages in the children’s section: Education, Health and Care Plans explain how to apply and what happens next.

Many of you will have regular hospital appointments as well as planned and unplanned hospital stays. Your parents will need to keep your school as up-to-date as possible about any of these.

Though these have to take priority over being at school, the nearer you get to GCSE and A-Level time the more disruptive they can be.

Short Absences

Your school should keep in touch. Your subject teachers should send work home if you are off for more than a day or two. Some schools can do this through their website. Others may provide some outreach support, for instance if you have a support assistant, they may come and do some work with you at home.

Hospital School

If you are admitted to hospital you may attend the hospital’s school. The hospital education team should talk with you and liaise with your school about what you need to be doing and how they can help.

Absence at Home for Health Reasons for More Than 15 School Days

The local authority must provide alternative education – either full time or as much as you can manage. It can be provided in a number of different ways, including:

• A home tutor
• Online learning
• A small unit for children with medical needs

Before arranging this, the local authority may need a referral from your school or a letter from a consultant stating that you are not well enough to attend school. The teams co-ordinating alternative education have different names in different areas. Common names are ‘home and hospital tuition’ or ‘EOTAS’ (Education Otherwise Than At School).

If you have an Education, Health & Care Plan, it can include what will be set up when you are absent from school.

Going Back to School

It may be possible for you to have a gradual return, for instance through part-time attendance for a limited time. You can discuss what will work best with your school and the services that have been providing education and care for you. You may also want to agree with school what information you are comfortable having shared with other students.

You will need to pick your options for GCSE during year 9. There are no subjects that are out of bounds including practical subjects such as technology, art and music. Your school is legally obliged to put support in place for you during your school years. You might find certain tasks a struggle – such as:

• writing extended pieces in subjects like English and History
• cutting up materials in art
• some of the practical work in science

You are entitled to have an assistant to help you with these things and more, so that you can focus on studying like everyone else. This is in addition to any help you may need from an assistant with things like using the toilet or carrying your school bag around.

If you do not already have help in school and you think it would be useful, please speak to your SENCO (Special Educational Needs Co-ordinator) or whoever has this role in your school – or someone you trust to get the process started. Having SMA does not restrict you from choices.

Schools require students to take part in work experience at different times – some schools do this in year 10, others in year 12 – usually for 2 weeks.  It is always viewed favourably by future employers and can also help you decide your career.

Usually you have to find your own work experience.

• If you have a particular career or job in mind, see if you can get relevant work experience. Friends or family may be able to help.
• If you do not know what you would like to do  – do  friends or family members work somewhere interesting?
• If you have absolutely no idea and no connections, then speak to a member of staff in your school. They should be able to advise you further.

Physical access is likely to be very important for you:

• Will you be able to get transport there?
• Is the placement upstairs? Is there a lift?
• Is there a fully accessible loo?

It might be very difficult to find somewhere that has everything, so sometimes you might want to be flexible or creative. Employers must make reasonable adjustments for their employees, so if there is something you might need, make sure you let them know. If you have found a suitable place for your work experience but, for example, there is no suitable toilet, then is the venue local to your home? Building a more accessible toilet might not be a reasonable adjustment for a 2 week work placement, but enabling you to go home during your lunch break could be an option.

Will you need someone to go with you to work experience? If so, make sure you mention this too, so that the  employer is aware of this. Most employers, even for work experience, are understanding and want to give young people opportunities.

“I had a great week in the police control room where they take 999 and 101 calls as well as dispatching the police officers to deal with incidents. I was able to listen to some of the calls and to see how the police responded to them." Luke

Read about Luke’s experience >

This can be a good way to meet people and develop self confidence, learn and practise new skills, and at the same time give something back to society. It can also be a ‘stand out’ addition to your CV.

There may be local volunteering opportunities, such as with a charity or youth club. You may prefer something you can do online and based at home, for example connected with social media or website updating.

There are rules and regulations to help keep volunteers safe. You should not end up spending money on your volunteering and you should not be used to do the job of someone who should be paid.

There are several organisations that can help you find a way to volunteer that suits you. It is worth being aware that many volunteering opportunities will need you to be a minimum age. To avoid any disappointment, do tell organisations:

• your age
• what you needs in terms of accessibility – things like:
• no stairs
• accessible toilet
• hands free phone
• if you need your Personal Assistant (PA) with you.

Your family and friends, form tutor, your SENCO (Special Educational Needs Co-ordinator) or your careers advisor, if you have one may have ideas.

NCVO – a searchable list of local volunteering centres.

National Citizen Service (NCS) – scheme for 15 to 17-year-olds.

Do-it.org – database of volunteering opportunities across the UK.

Field trips are an essential part of some subjects, such as Geography. You should not be excluded. Your school has to make reasonable adjustments for you to take part. For example, this might be an accessible coach and accessible accommodation.

Sometimes a school’s ‘usual’ field trip programme includes places or activities that are not suitable for wheelchairs or people with walking difficulties.  School might need your help to find some alternatives which work for everyone. Planning well in advance is the key. Talk to your subject teacher when you choose their subject and ask your parents, SENCO and TA(s) to discuss and plan an inclusive field trip.

Some schools offer this for anyone aged 14 to 24. You have to take part in a range of activities and challenges over 3 progressive award levels. As well as being a lot of fun and giving you the chance to enjoy new opportunities, it can be good to have on your CV (Curriculum Vitae). You will need this when you are thinking about future education or work. A CV summarises your education, skills and relevant work and other experiences.

See: Duke of Edinburgh and talk to your school if you are interested.

When you are going on work experience or volunteering you will often have to give some information about yourself.  How much you give and how much you say about your SMA is a personal decision. People often worry about discrimination, prejudice or lack of confidentiality.

If you do decide to be open, most people will never have heard of SMA. Take your time to tell them:

• what impact it has on you
• what support you need to take part in what you have chosen to do .

Advantages of being open could include:

• Some places are keen to involve disabled people
• It could give you an opportunity to talk about yourself positively
• Adjustments can be put into place earlier
• You might build a better relationship and understanding with the people you are going to be with

You are the expert on your condition. You know:

• what you can and cannot do with and without assistance
• what you can do in a different way
• what works best for you.

Sharing this information can be helpful.

In the UK, the Equality Act 2010 states that all people, including disabled people, should be treated equally and protected from discrimination in many situations, including education, employment, access to facilities, transport, goods and services. For more information:

• Disability Rights UK / Understanding the equality act: information for disabled students

School can be a great time with new experiences, learning about things you didn’t know, hanging out with friends etc. It can also have its down times. This section talks about some of these down times and ideas for managing them.

Issues with access and not being included

Your teachers should be aware of your access requirements and needs. You should never be deliberately excluded from a class or activity. However, there may be occasions such as a school trip or sports day, where you may feel isolated from everyone else. If you know that a event is coming up, speaking as early on as possible to your form tutor or another teacher about how you can be included can help. If, despite everyone’s best efforts to adapt things for you, it doesn’t feel inclusive or you don’t feel comfortable, ask your tutor if something else can be arranged for you. You could join another class for that afternoon.

Exams

Exams are stressful for everyone. Living with SMA means you should probably be entitled to extra support at exam time. This might include:

• extra time in your exams
• writing breaks if you are writing
• use of a computer or a scribe (someone to help you write).

This has to be agreed a long time in advance of the exam, so speak to your SENCO as early on as you can.

If you have a practical exam (such as art) talk to your subject teacher about what extra support you need and how this will be provided in the exam.

If you need the toilet during an exam, school should be aware of your needs. Extra time should be added to the end of your exam.

It is very common for students to feel nervous at exam time (and the time leading up to exams). For example, some may experience feeling more anxious than usual, panic attacks, and problems with sleeping or eating. If you are worried or struggling, speak to someone you trust about how you feel. This could be your form tutor, another teacher or, if you have one, the school counsellor. There are apps where you can chat to someone online about how you are feeling.

Some suggestions to help you prepare for your exams:

• Start revising at least 2 months before your first exam
• Make a revision timetable
• Don’t overwork yourself. Allow yourself regular breaks and days off from revising
• Try to eat a healthy diet, especially on your exam days
• Keep hydrated with fluids. If this means you may need to use the toilet during exams let your teacher know
• Get a good night’s rest before your exam days.

Bullying

Bullying is not acceptable and shouldn’t be tolerated by anyone. Schools will have a behaviour policy and should have clear rules and sanctions in place around bullying. Bullying can take many forms including verbal, physical and cyber bullying. If you feel that you’re being bullied, please talk to someone – your form tutor, head of year or any member of staff that you feel comfortable with. Sometimes, your teachers being aware of situations and making sure that you don’t sit near certain people can make a big difference. Other times there may need to be further intervention. Either way, bullying is never your fault, and should be dealt promptly and seriously by your school.

For more information and ideas, see: If You’re Being Bullied in the Emotional & Psychological tab on this page.

Time away and getting back in to school

When you’ve had some time off – and possibly quite a long time, dealing with ill health or surgery – the world of lessons, exams, classmates and everything connected with school or college can feel a million miles away.  It can be difficult to get your head around how you’re going to go back to school and manage all that’s involved.

As mentioned in the section Health-Related Absences (see above), it may be possible for you to have a gradual return, for instance through part-time attendance for a limited time. You can discuss what will work best with school and the services that have been providing education and care for you. You may also want to agree with school what information you’re comfortable having shared with other students.

Age 13-16 planning

All schools have to help you plan what next. This is often called planning for transition. They also have to provide independent career advice so that you can think and plan what you want to do when you are 16 and older.

If you have an Education, Health and Care Plan (EHCP), this planning should start when your plan is reviewed in year 9 (age 13 / 14) and continue every year after that.