Many young people who have SMA need additional support to access learning opportunities. This may be:

• support with physical or personal care
• getting around
• assistive technology

These needs are described differently across the UK:

• England & Northern Ireland – Special Education Needs (SEN) or Special Education Needs & Disabilities (SEND).
• Scotland – Additional Support Needs (ANS)
• Wales – Additional Learning Needs (ALN).

England

Contact > the charity for families with disabled children. Provides detailed information and also have an advice line.

Special Education Needs & Disabilities Information, Advice & Support (SENDIAS) >  a free, impartial and confidential service, independent from local councils.

IPSEA >  a charity providing detailed information about any educational issue that is a result of a child’s Special Educational Needs and Disability (SEND). You can also book an individual appointment.

SOS!SEN >  a charity with a free, independent and confidential helpline for parents and others looking for information and advice on Special Educational Needs and Disability (SEND).

Northern Ireland

Contact > the charity for families with disabled children, provides detailed information and also have an advice line:

SENAC > gives information and advice about getting help and support for children with special educational needs.

Scotland

Contact > the charity for families with disabled children, provides detailed information and also have an advice line.

Enquire > the Scottish advice service for additional support for learning.

Wales

Contact > the charity for families with disabled children, provides detailed information and also have an advice line.

SNAP Cymru > provides information, advice and support to parents, children and young people (0-25), who have, or may have, special educational needs or disabilities.

Many children and young people who have SMA have more needs to support their access to learning than a mainstream school can provide. They may have an EHCP to support their needs.

If you don’t already have an EHCP but your SMA is causing more challenges for you this might be something to consider. The sort of things that may trigger this would be, for example:

• if your mobility is getting more challenging or
• you are having difficulties with things like:
  • writing,
  • turning pages
  • managing a keyboard
  • getting changed at school for PE

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 harder 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 not possible, 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 some tasks are 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.

Schools require students to take part in work experience at different times. Some schools do this in year 10, others in year 12 . It’s usually for 2 weeks.  Work experience is always viewed favourably by future employers. It 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 don’t 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 to the employer. Most employers, even for work experience, are understanding and want to give young people opportunities.

This can be a good way to:

• meet people
• develop self confidence
• learn and practise new skills
• give something back to society.

It can also be a ‘stand out’ addition to your CV (Curriculum Vitae). You’ll need this when you’re thinking about future education or work. A CV summarises your education, skills and relevant work and other experiences.

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 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. 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
• what you need 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 may have ideas.

Do-It > – online database of volunteering opportunities throughout the UK and overseas

NCVO > – a searchable list of local volunteering centres.

Volunteering Matters > – information on volunteering and opportunities

• England: National Council for Voluntary Organisations >
• Scotland: Volunteer Scotland >
• Wales: Volunteering Wales > 
• Northern Ireland: 
  • Volunteer Now > 
  • NI Direct / Volunteering >

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 aren’t 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’ll 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 >. Talk to your school if you’re interested.

Not all schools have DofE programmes. There may be another provider in your area that can help. See DofE Approved Providers > 

When you’re going on work experience or volunteering you’ll 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’re going to be with

You’re the expert on your condition. You know:

• what you can and can’t 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.

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 an event is coming up, it can help to speak as early on as possible to your form tutor or another teacher about how you can be included. 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’re writing
• use of a computer or someone to help you write (a scribe).

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

If you have a practical exam, such as art, talk to your subject teacher. Tell them what extra support you need and ask 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’s very common for students to feel nervous at exam time and during the time leading up to exams. For example, some may experience:

• feeling more anxious than usual
• panic attacks
• problems with sleeping or eating.

If you’re 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’re 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 all 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. This could be your form tutor, head of year or any member of staff that you feel comfortable with. Sometimes, if your teachers are aware of situations they can do things like make sure that you don’t sit near certain people. This can make a big difference. Other times there may need to be further intervention. Either way, bullying is never your fault. It should be dealt with promptly and seriously by your school.

For more information and ideas, see Tab 7 : If You’re Being Bullied in  Emotional & Psychological – Mental Health and Well Being >

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 Tab 3 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 live in England and 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.