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.

One of the things that goes with SMA is medical appointments. For many of you these will be frequent and you will also have had planned and unplanned hospital stays. It’s important your parents keep your school as up-to-date as possible about any of these.

These have to take priority over being at school but the further you get on with your studies and the nearer you get to GCSE and A-Level time the more you might find them a pain – not to mention missing your friends and what’s going on.

Short Absences

Your school should keep in touch and your subject teachers send work home if you’re 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’re 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’re 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’re 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 the 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.

You will need pick your options for GCSE during year 9. There are no subjects that are out of bounds to people living with SMA 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. So though 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 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 don’t already have help in school and you think it would be useful, please speak to your SENCO (Special Educational Needs Co-ordinator) or someone you trust to get the process started. Having SMA doesn’t 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’s helpful for getting a job, is always viewed favourably by employers and can also help you decide your future career.

Do you have a particular career or job in mind that you’re interested in doing when you leave school? If so, then think about trying to find work experience in that field. If you don’t know what you want to do when you leave school – try something to see whether it interests you or not. Do you have any friends or family members who work somewhere interesting? If you have absolutely no idea, then speak to a member of staff in your school who should be able to advise you further.

Usually you have to find your own work experience. Physical access will probably be very important for you. Realistically there’s no point doing your work experience in an office upstairs with no lift if you can’t manage stairs anymore… or working in a location without an accessible toilet if you would need one.

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’s something you might need then just make sure you let them know. If you’ve found a suitable place for your work experience but, for example, there’s 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.

For more ideas: Whizz-Kidz offer a range of work placement and internships opportunities, and work skills days designed for young disabled people age 14-25 years old.

“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, or 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 – and as a volunteer, you shouldn’t end up spending money on your volunteering and you shouldn’t 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, but it’s worth being aware that many volunteering opportunities will need you to be a minimum age. To avoid any disappointment, do tell organisations your age and what you needs in terms of accessibility – things like no stairs / disabled 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.

Join in – for local sporting and community projects – a legacy of the London 2012 Olympic and Paralympic Games. Contact them to find out more.

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

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

Many schools organise these. Some subjects, such as Geography, might require you to go on a field trip. You shouldn’t be excluded because you have SMA – reasonable adjustments have to be made, such as an accessible coach if needed.

The school’s ‘usual’ field trip programme may include some places or activities that aren’t suitable for wheelchairs or people with walking difficulties, so 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. It offers a range of activities and challenges over 3 progressive award levels and can be good to have on your CV. See: Duke of Edinburgh and talk to your school if you are interested.

Being open about your SMA when you’re going on work experience, volunteering or generally creating and taking opportunities to build up your CV is a personal decision. People often worry about discrimination, prejudice or lack of confidentiality. You will often have to give some information but it’s up to you how much. If you do decide to be open, most people will never have heard of SMA, so take your time to tell them what impact it has on you and what support you need to take part in what you’ve 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’re going to be with

You’re the expert on your condition, what you can and can’t do with and without assistance, what you can do in a different way and 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 and 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 particular event is coming up, then 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, such as joining 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 and extra time should be added to the end of your exam.

It’s 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’re worried or struggling, speak to someone you trust about how you feel – 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 – but also be aware if you may need to use the toilet during exams
• Get a good night’s rest before your exam days.
• The Emotional & Psychological section on this page covers ways to get support that may be helpful.

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

Often called planning for transition, all schools have to provide this, as well as 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 should start when your plan is reviewed in year 9 (age 13 / 14) and continue every year after that.

You can find lots more information about possible options in the tabs on our What’s Next Moving into Adulthood pages