Education n.sutherland@m… Tue, 05/25/2021 - 13:03

Get advice from our information and advocacy service

We offer advice and guidance to parents, professionals and young people. We can help you:

  • choose the right school for your child’s needs
  • get the right level of support for your child’s special educational needs (SEN)
  • introduce adaptations in the school
  • get support with moving into higher education.

There is a range of support available at school and university level to help children and young people fulfil long-term goals and aspirations. This includes getting access to further education or employment.

Contact our Advocacy Team for help with any of this.

As of 1 September 2014, changes have been made to how SEN is put into practice in educational institutions. These are set out in the Children and Families ActThis new system for special needs will replace the old Special Educational Needs (SEN) Statements and Learning Disability Assessments.

Education, Health and Care Plans

The new Education, Health and Care Plans (EHC Plans or EHCPs) aim for a better understanding of all aspects of a child or young person’s condition. This is so that children and young people in full-time education up to the age of 25 have a better quality of support.
EHCPs aim to improve upon the older Special Educational Needs (SEN) statementing system in several ways. 
To request an assessment for an EHCP, contact the SEN team at your local council.

Other types of support

Children with less complex needs who do not require an EHCP can also get support in school.
You will need to discuss this type of special educational needs support with the school’s Special Educational Needs Co-ordinator. It may include support such as:

  • creating a special learning programme for your child
  • giving extra help using a teacher or a learning support assistant
  • working with your child in a small group
  • supporting your child with physical or personal care difficulties, such as eating, getting around school safely, toileting or dressing.

Support in higher education

Disabled Student Allowance

Disabled Students’ Allowance (DSA) is a kind of financial support. You can apply for this on top of a student loan in order to meet the extra costs of living and travelling to university with a disability. If you are eligible, you could get up to £10,362 a year to help you with your studies.
To apply for the DSA, download a DSA application form.




Access to schools

Access to schools n.sutherland@m… Tue, 05/25/2021 - 13:28

Early years setting (day nurseries, pre-schools, playgroups and childminders)

The Early Years Foundation Stage (EYFS) sets the standards for learning, development and care for children from birth to five years old. All OFSTED-registered early years providers must follow the EYFS, which states that providers must have arrangements in place to support children with special education needs SEN or disabilities.

When a child enters early years setting, staff may notice that they may have some physical developmental delays. Activities, such as toilet training and feeding, may require more support. Additional difficulties that may be apparent have been listed in the Key Stage 1 section, which follows.

All early years settings know that play is vital for all children. It is the way children explore and make sense of the world around them. Play offers opportunities to relax, express feelings, and develop social and cognitive skills necessary for school and later life. All children need the fun of play and learning opportunities.

If staff members have concerns that a child is struggling to achieve the core learning and development requirements of the EYFS, they must discuss this with the child’s parents and/ or carers and agree how to support the child. Staff must consider whether a child may have a special educational need or level of disability that requires specialist support. They should link with, and help families to access, relevant services from other agencies as appropriate. Further guidance on this can be found in Key Stage 1 and Key Stage 2, as well as 'Assessing the Pupil' below.

Key Stage 1

Key Stage 1 covers the period from Upper Foundation, through Year 1 and Year 2 (from five to seven years old).

While some children with muscle-wasting conditions may enter school in a wheelchair, (those with SMA or congenital muscular dystrophy, for example) those with Duchenne muscular dystrophy or neuropathies (for example, CMT), are likely to be walking. All children should be encouraged to join in activities as far as they are able.

Before starting school, it is important to have planning meetings to ensure the child, family and school are supported to meet these needs. Advice from an occupational therapist (OT) and/or a physiotherapist can be invaluable in deciding what type of equipment will help maintain the child’s independence. Some children may not yet be diagnosed with a muscle-wasting condition. A teacher might notice the child having difficulties, such as:

  • struggling to get up from the carpet
  • frequently falling in the playground
  • poor balance
  • slow when climbing stairs
  • difficulty using apparatus in PE lessons
  • tiredness during the afternoon session
  • a noticeable change in stamina over the week
  • poor handwriting because of weak pencil grasp
  • slowness in eating food or weak cough
  • frequently off school with chest infections
  • difficulties with learning.

Teachers often notice how different one child’s mobility is from another’s, and this can help with diagnosis. If you have concerns about a child’s physical development, you need to discuss this first with the parents and then discuss making the appropriate health referral. It is important to remember, however, that while many children have co-ordination and movement difficulties, these are not necessarily related to a musclewasting condition.

Key Stage 2

Moving through Key Stage 2, Year 3 to Year 6 (from seven to 11 years old), children with muscle-wasting conditions, who have impaired walking, fine motor difficulties, or are wheelchair users, are likely to become more aware of the differences between themselves and other children. This awareness has implications for their self-image.

A child with a muscle-wasting condition, while usually still ambulant, will become weaker. Walking will become limited and gross motor skills and the muscles in the upper body will start to be affected. Provision of specialist equipment should be introduced at this stage.

It may be necessary to use specialist equipment, such as standing frames. If writing becomes affected, the pupil could require a computer or scribe. It is best to introduce alternatives to paper/pencil recording, i.e using ICT, before the child’s upper body strength becomes significantly weaker. As the physical difficulties increase, some pupils may present challenging behaviour as they begin to realise the implications of their diagnosis.

Some children with Duchenne muscular dystrophy may have specific learning difficulties; however these do not get worse as the condition progresses.

For a child with a muscle-wasting condition, there are likely to be a several external professionals seeing the child and guiding staff. It is helpful for ongoing review and assessment if the school keeps a record of the name, contact details, involvement and contribution of every professional involved with the child. A communication book, used by school and parents, provides a useful two-way communication channel for school and external professionals to keep in touch with parents.

While at school, a child may have many different needs to accommodate within the curriculum. It might be useful to use an individualised timetable to record when care is needed. 

Things to be recorded on the form include:

  • mobility and postural needs (changes in seating from wheelchair to class chair) 
  • therapy input from an OT or physiotherapist or use of standing frame
  • wheelchair training or specific activities for children with learning difficulties.

It is important to keep a record of actual achievements against the plan. Information should be recorded about the child’s physical abilities and the assistance required for each activity. Keep parents informed when any activity has not been implemented.

Secondary school


Moving on to secondary school can be exciting, challenging and worrying for all pupils, whether they have a medical condition or not. As a teacher, you are aware of this and are experienced in helping new pupils integrate successfully and establish their place within the school. For those pupils with a physical and/or learning disability, as for those with some muscle-wasting conditions, it is important to plan ahead to achieve the same goals. There are people and organisations to help you. Your school will most likely have a SENCO/ASN Scotland, who is responsible for organising planning meetings and in-service training about the pupil’s needs.

Other sources of information and support include:

  • parents
  • NCAs
  • OTs
  • physiotherapists
  • other health professionals
  • Muscular Dystrophy UK
  • Trailblazers’ reports and top tips for young people, written by young people.
  • Disability, Information, Advice, Support Service (England) – (should be in every Local Authority)
  • Independent Parental Special Education Advice (IPSEA) –
  • Special Educational Needs and Disability (SEND) Code of Practice 20154 0-25
  • Department for Education and Department of Health, England – applies to 0-25 years in education or training
  • Children and Families Act 2014
  • Enquire (the Scottish Advice Service) for additional support for learning
  • Children in Scotland National Agency for voluntary, statutory and professional organisations working with children and their families in Scotland

Key Stages 3 and 4

Not every pupil with a muscle-wasting condition will require additional support. For those who do, the scale will vary considerably. For example, it may vary from requiring extra time to get from class to class, to one-to-one support for all educational needs and personal and domestic activities.

Schools should identify and support pupils with SEN. Pupils may be supported from within the school’s own resources under SEN support, or an Education Health Care Plan (EHCP) (a Co-ordinated Care plan in Scotland, or an SEN Statement in Northern Ireland) provided by the Local Authority (LA).

During this time of transition to adulthood, it is worth remembering that pupils with a muscle-wasting condition will experience the same feelings as their peers. In addition, they may be dealing with feelings of uncertainty about how their condition will affect their future hopes and aspirations.

For those with a life-limiting, progressive condition, parents and all adults involved need to liaise closely to agree how much, by whom and when the pupil is to be told about their condition. Schools may wish to consider establishing a support network for these pupils and for staff and peers who work closely with them. (This may be the case for siblings of children with muscle-wasting conditions too.)



Bullying n.sutherland@m… Tue, 05/25/2021 - 13:51

Bullying is wrong and every child has the right to enjoy school free from bullying.

This guide is to help you understand more about what bullying is, what you can do if your child is being bullied, and who can help you.

The school's responsibility

Research shows that young disabled people and those with special educational needs are, disproportionately, more likely than their peers to experience bullying.

All schools are required by law to have a behaviour policy with measures to tackle bullying among pupils. Schools are free to develop their own anti-bullying strategies, but they are held clearly to account for their effectiveness through Ofsted.

School staff should support all pupils who are bullied and develop strategies to prevent bullying from happening. To help schools support pupils who are severely affected by bullying, the government has strengthened teachers' powers to tackle poor behaviour and bullying through the Education Act 2011.

The DfE has also updated its advice to schools so that it is shorter and more accessible. It brings together in one place information about schools’ responsibilities both to support children who are bullied and to make appropriate provision for a child’s needs.

The advice, Preventing and tackling bullying, is available at publications/preventing-and-tacklingbullying

When your child asks, “Why me?”

Being bullied at school is something that happens to a lot of children. So if it’s happening to your child, he or she is not alone.

Sometimes children who bully pick on other children because they think they’re a bit different or because they like different things.

Children who bully may pick on disabled children because it’s easier to bully those who have difficulty either speaking up for or physically defending themselves.

They tend to pick on children whom they see as being weaker than they are. They might even do it because bullying others makes them feel better about themselves.

Bullying can take many different forms, such as being called horrible names, being physically hurt or being excluded from things. It can also take the form of nasty text messages, emails or social media messages (this is called cyberbullying).

This can be very upsetting for the child being bullied.

There may be times when a child who bullies might tease a disabled child because they don’t understand what it’s like to have a disability. They might feel awkward and unintentionally leave them out of things. They might tease in a jokey way, thinking they are being funny, and not realise what they’ve said has been insensitive and unkind. If the teasing makes the person feel uncomfortable and unhappy, or if it happens a lot and it’s obvious they’re not enjoying it, this is more likely bullying rather than light-hearted teasing.

It’s important to remember that being bullied because you have a disability is 100 percent wrong and unacceptable. It is not your fault, and you have nothing to be ashamed of. The fact is children who bully don’t realise that bullying is actually a sign of weakness. Standing up against bullying shows a person has real courage and inner strength.

My child is being bullied – what can I do?

If your child is being bullied, he or she is probably going through a whole range of emotions right now. They may feel upset, angry, scared, ashamed, lonely and confused. It is completely understandable to feel this way. Here are some things you could tell your child to do.

Tell them to stop and then ignore them

If a child is bullying you, tell them calmly, ‘Stop bullying me. It’s not nice and I don’t like it.’ If they don’t stop, then ignore them. Children who bully do it because they like to make other children angry and upset. If a child is bullying you, try to move away and stay calm.

Keep a diary of what is happening

If the same people keep bullying you, and over a long period of time, keep a diary of what is happening to you. Write down what they said and did, when and where they did it. This will help to show evidence of what is happening to you and that it’s serious.

Block them

If you’re experiencing cyberbullying on your phone or computer; keep the texts, emails and screenshots of messages as evidence. You can block accounts on social media, and on some mobile phones too, so they won’t be able to send you any more messages. The Diana Award’s Anti-Bullying campaign has a useful website on how to stay safe online:

Tell an adult

Speak to your parents, carer or another adult you trust about what is happening to you and how it makes you feel. Show them your diary of evidence and any copies of text messages or social media messages they’ve sent you. Children who bully think you won’t tell anyone, so don’t let them get away with it – tell someone what is happening to you and as soon as you can.

Tell your school

Schools take bullying very seriously. All state schools should have an anti-bullying policy that says what they will do to prevent and tackle bullying and how they will support you. Some schools also have a 'buddy' system and anti-bullying ambassadors.

Tell a friend

If you don’t feel ready to speak to an adult or to your school just yet, tell a friend about what’s happening to you. Ask if they can support you by joining you at break-time or by coming with you to tell a teacher.

Tell an anti-bullying charity

If you don’t feel able to speak to someone in real life about it, there are organisations out there that can support you. Their names and contact details are listed below.

Don’t let it get you down

Children who bully enjoy making others feel scared and upset. Try not to let it get you down or stop you from doing things you enjoy. Keep studying and doing your best in school, because good grades are something that bullies can never take away from you. Take up a hobby like Powerchair football, or join a group like the Scouts or Girl Guides. Stick with your friends who you trust and are supportive. If your friends don’t stick up for you or they become ‘frenemies’, seek out better friends who won’t make you feel rubbish – you deserve better.

Remember – children who bully do it because they think you won’t tell anyone and that they will get away with it. So telling someone you are being bullied is a really brave thing to do.


  • lots of children experience teasing and bullying
  • bullying can happen to anyone, for any reason
  • being bullied is not your fault
  • it is your right to enjoy school free from bullying
  • keep a diary of what is happening, as evidence
  • when bullying happens, move away from the situation and keep calm
  • if you’re being cyberbullied, don’t reply to the messages but keep a copy of them
  • tell someone as soon as you can that you’re being bullied – don’t suffer in silence
  • bullying someone isn’t brave – but taking a stand against bullying is!

Organisations that can help you

  • ChildLine has a helpline for children. You can ring them on 0800 1111 or visit their website
  • The Diana Award’s Anti-Bullying campaign has some helpful information about how to deal with bullying. They also train young people to become AntiBullying Ambassadors in school

Did you know?

Bullying can happen to anyone. Famous people who were bullied at school include pop singer and actress Demi Lovato, Hunger Games actress Jennifer Lawrence, singer Rihanna, Olympic diver Tom Daley, Harry Potter star Daniel Radcliffe, Paralympian Sarah Storey, and singer Taylor Swift!


Emotional support

Emotional support n.sutherland@m… Tue, 05/25/2021 - 14:07

For this to be effective, schools must fully understand both the diagnosis and prognosis of the condition, and the physical changes that are likely to take place in the child during his or her time at school. SEN advisors and physical difficulties teaching advisors are employed by the LA, and can offer advice and information. The NCA and healthcare professionals will visit schools to give specific advice.

They can also provide information towards the formulating of an EHCP (SEN Statement in Northern Ireland, Co-ordinated Care Plan in Scotland).

Dealing with diagnosis

Everyone handles news of a diagnosis with a muscle-wasting condition in their own way. Where the prognosis of the condition is life- limiting, there is likely to be a wide range of reactions. What all parents must face, however, is the reality of living with their child’s progressive condition. Coming to terms with a diagnosis can often mean a period of fluctuating emotions for the entire family, and this could continue for a long time. Some feelings may re-surface as the condition progresses and the child begins to lose specific skills.

Most families will have been given an accurate diagnosis and prognosis, but may be unable to emotionally process and deal with the information they have received. Some families choose to tell their child everything about the condition, some say nothing, and others give their son or daughter limited information. There is no right or wrong way. Each family finds their own way of managing this with the support of professionals, as and when needed, for direction and support.

Some parents find being active on social media offers them a form of support and another way of being in contact with other parents for peer support and guidance.

Families are likely to have strong views on what their children should and should not know about their condition. It is vital that schools sensitively raise the issue with the family about what the child has been told, and find out whether the information he or she has been given is age-appropriate. Staff members need to understand what the parents’ views are about sharing information, and the importance of working together with professionals to develop a plan to support their child and the wider family.

Difficulties can arise, for example, if an older child searches on the internet for information about his or her condition and begins to ask questions that require honest answers. Similarly, schools also need to be aware of how much the affected child’s siblings understand.

Agree with the parents on appropriate and consistent responses to be given to questions asked by the child. These responses should be included in the whole school plan, so other staff members are aware of what to say. A few parents want to protect their children from the reality of the situation and, in these cases, it may be necessary to seek specialist advice to ensure that the needs of the child are being met.

General support for the child, family, staff and pupils

Muscular Dystrophy UK has developed helpful guides for parents and/or carers of children recently diagnosed with a muscle-wasting condition. The aim is to offer support and information to families at this difficult time, and to answer the questions most parents/carers ask. (See Resource list.)

The family should have access to support from a specialist medical team via their local paediatrician, and health and social care professionals. In some areas, there may be support groups that enable families to meet other families in similar situations. In addition, they may be offered psychological support, via their GP, from a clinical psychologist or EP. Many families with children with life-limiting conditions access support from their local children’s hospice, where they may go for respite care and to meet other children with the same condition. Hospices offer a wide range of services to support the whole family, including siblings groups, counselling, training and professionals that can offer support through different stages of the child’s life especially around the difficult times such as end-of-life, or when the condition deteriorates.

The child's needs

Support for the child’s mental health and wellbeing is essential. Professionals can provide this, but children will often seek support from those people they feel comfortable with at school. It may be that they will ask an ESA or a lunchtime carer searching questions about their condition.

Often valuable support for a pupil with a muscle-wasting condition comes from another pupil with a similar condition. Liaison with a NCA/specialist nurse or local paediatrician can provide opportunities for this connection, or events and support groups organised by MDUK.

Understanding a child’s condition is important in creating realistic expectations for him or her. It is essential to concentrate on what children can do rather than what they can no longer do. Let them make their own decisions, even when they are physically unable to perform certain tasks. Allow them, for example, to make their own choices at lunchtime, rather than having decisions imposed on them by an adult.

Working towards social inclusion can be difficult and it is important to give children the opportunity to integrate with their peers, without adult supervision. A ‘buddy’ or peer support system can be particularly helpful during break and lunchtimes to promote positive social interaction. Schools should also promote positive role models of disabled people throughout the curriculum.


Exercise and diet

Exercise and diet n.sutherland@m… Tue, 05/25/2021 - 14:21

If this is the case your child is likely to be referred to a SALT and/or a dietician.

If there are no feeding difficulties, it is helpful to establish a healthy eating pattern, which maintains weight within a normal range. Excess weight makes it harder for a child with weak muscles to move. It also makes any moving and handling assistance more risky.

If your child becomes less physically active, they will require a lower calorie intake.

Muscular Dystrophy UK has a factsheet, entitled Healthy eating for children with neuromuscular conditions, which you may find helpful.


And there are even better reasons for doing exercise. But first, you need to make sure that you are doing the right type of exercise. Keep your child as active as possible and try to make the activities fun. There is no need for anything excessive; normal play is fine. When your child joins in with PE and games, they will judge for themselves if an activity is too challenging for them. Your child’s local physiotherapist can visit the school to advise on appropriate activities, including PE.

If appropriate, encourage walking. Your child may tire more quickly than their friends, so do make allowances for this. Activities such as walking up hills, and/or climbing stairs, may be particularly difficult. If your child can manage them, swimming, cycling and horse riding are excellent physical activities.

If my muscles are weak why can’t I use weights to make them stronger?

Because the membrane of the muscle is fragile, overworking the muscle by lifting heavy weights could damage it. But there are other active exercises which you can do yourself that are good for you.

Why does my physio want me to have hydrotherapy when I just think it’s a pain getting undressed and dressed again?

Hydrotherapy is probably the best way to exercise if you have a muscle-wasting condition. The warm water supports your body and relaxes your muscles, which makes stretching exercises much easier. The best thing about hydrotherapy though is being able to move much more freely than you usually can and it’s really good fun!

What is the point of stretching exercises?

Stretching exercises are perhaps the most important exercises for all ages. Anybody who sits in the same position all the time will get stiff and uncomfortable. If you have a muscle condition, the stiffness can become permanent if the muscles and joints are not moved and stretched. Physios and doctors call this stiffness a ‘contracture’. Knees, for example, normally bend right back so that the calf and the back of the thigh meet and they can also straighten up. In muscular dystrophy, there may not be a problem in bending the knee, but sitting in a chair all the time canmake it difficult to straighten up. Joints that don’t have a full range of movement can get achy and it’s sometimes difficult to find a comfy position in bed. So best to just get on and do those stretching exercises.

What about my hands and arms?

Hands and arms need to be stretched too. Playing computer games is very important to most kids whether they have a musclewasting condition or not. Don't play for long periods of time – take regular breaks. To keep your fingers flexible, ask your physio what you can do (yes – it's more stretches).

What about my feet?

Looking good is important to many young people. If contractures of the feet and ankle develop, this might make it difficult to wear the sort of trainers or shoes you prefer. Wearing splints every day will keep your feet in the right position so that you can look good (and yes, there are stretches which will help too!). The posture of the upper leg is very important when looking at your foot posture. If your legs flop apart, your feet turn on to their sides (try it!).


Always make sure that your legs are properly supported by your wheelchair.

A caller to Muscular Dystrophy UK’s helpline:

I have a powered chair. At first I was a bit anxious about it but now I am really good at using it. Of course, I’ve had to practise a lot.

Do you need help?

Most youngsters are able to learn to drive a powered wheelchair without too many problems. However, if you are under 18 years of age you may want to learn to control your wheelchair more safely and be more confident and independent.

You wouldn’t dream of wearing clothes that didn’t fit you properly so why should you put up with a wheelchair that doesn’t fit? Having the right wheelchair makes you feel more comfy and looks better.

Are you comfortable in your chair, or are you leaning over to one side? If you think your chair is too wide ask your physiotherapist or OT for advice.

Do you bend forward to get your arms comfortably on the armrests? Do the armrests dig in? Ask your physio to check the height of the armrests and ask about adjustable ones.

Do you feel tired and want to lie down when you come in from school? Do you find it hard work keeping your head up? Find out about ‘Tilt in Space’ wheelchairs from your physio or OT to see if they might be suitable for you.


The charity Whizz-Kidz runs a scheme called 'Keep on Moving' which has different courses for different ages. Look at the website, phone 020 7233 6600, or email

Read Muscular Dystrophy UK’s Wheelchair guidelines (available online, or by calling Freephone 0800 652 6352).

The Association of Wheelchair Children also provides advice about wheelchairs. It teaches skills that help develop confidence when using a powered or manual chair. Contact the Association on 020 7473 3684 or visit


SENCOs and other education professionals

SENCOs and other education professionals e.smith.bodie Mon, 07/05/2021 - 12:50

The SENCO will coordinate additional support for pupils with Special Education Needs and will liaise with their parents and teachers, as well as other professionals involved with them.

It is the SENCO’s responsibility to ask for an Educational Psychologist and other external services to be involved with a child. This is most often for children receiving support through School Action and School Action Plus. This can include general SEN assessments, administration and parental support.

The SENCO should have the support of the headteacher and other staff to try and develop effective ways of assessing the child’s needs and setting targets for improvement to:

  • overcome barriers to a child’s learning
  • ensure they receive effective teaching.

SENCOs must also collaborate with curriculum coordinators at the school to make sure that the learning requirements of all children with SEN are given equal emphasis and priority.

You may come into contact with other people within the education system. They include:

  • Advisory teachers, who are responsible for co-ordinating the Local Education Authority’s (LEA’s) response to pupils with physical and medical difficulties. They work alongside teachers and the LEA.
  • Education welfare officers, who work closely with schools and families to promote effective working relationships. They can become involved in attendance issues.
  • Educational psychologists, who are responsible for assessing a child’s Special Educational Needs and ensuring they receive the additional support they need. They are employed by the LEA.
  • Learning Support Assistants (LSAs) and Educational Support Assistants (ESAs), who help the class teacher make sure children with special educational needs are well supported. They are often assigned to work with one particular child.