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Last updated : May 2024

Many, but not all, children who have SMA, need additional support to access learning opportunities. This may be help communicating with other children, support with physical or personal care, getting around or getting to the toilet. These needs are described differently across the UK:

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

Early years options can include childminders, day nurseries, pre-schools, holiday playschemes, childcare in your own home and, in some areas, Portage services.

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We hope that our new ‘pack’ and recent podcast will help families as they start to think about primary education options.  The pack includes:

  • information about the education support system
  • a summary about SMA for schools
  • templates to help you describe your child and the support they will need
  • tips and ideas from parents / carers

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Our ‘getting started pack’ includes:

  • where to find information about the education support system where you live
  • a summary about SMA for schools
  • templates to help you describe your child and the support they will need
  • tips and ideas from parents / carers

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In England you can apply for an Education, Health and Care (EHC) Needs Assessment if you or your child’s education setting think that your child will need additional support. This is support that is over and above what would reasonably and normally be provided in mainstream education. (Please see Getting Ready for School – Northern Ireland, Scotland, Wales for links to information about support systems you may expect.)

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Many children who have SMA will have health needs that need careful management and monitoring. This may be from early on or develop later.

Your child’s early childhood setting / school will need to know about the current and possible future impact your child’s SMA may have on them. They will especially need to know what the signs are that your child needs urgent medical attention and what to do in case of any emergency.

The plan may include, for example:

  • who will give any medication
  • what to do in an emergency
  • any other special arrangements such as:
    • the need for your child to use an accessible toilet
    • assistance with any suctioning or non-invasive ventilation.

In England this is documented in an Individual Healthcare Plan (IHP).

It is important that any plan is shared with, and understood by, all staff and that the school is also aware of any Emergency Healthcare Plan (EHP) for a child. This is a written plan of action that any medical team can follow should a child become unwell. If you would like to read more about this, please see the ‘Regular and Emergency Care’ tab on this page.

Contact / Help with Medical Needs  gives more information

It is a good idea to look early on into what help you can get:

England: free school transport  

Scotland: Mygov/free school transport

Wales: Gov.Wales/help school transport

Northern Ireland: nidirect / home school transport 

Your school will have carefully thought through settling in plans for all children. You should have had the opportunity to talk through any additional plans your child will need with your child’s teacher, specialist advisors and any Teaching Assistant(s) (TAs) who will be providing support. For example:

  • daily routines for toilet
  • break and lunch-times
  • support with lessons and activities
  • safely getting into school from the vehicle at the beginning and end of the day
  • who and how to contact if you have questions.

If your child uses equipment for their mobility or other health needs, other children may be curious. You may want to talk to the class teacher and any adviser in advance about how your child and you would like to manage this. You might find it helpful for someone to talk to the class about your child’s SMA and how they might be able to help. For example, by holding doors open and not pushing against each other.

The Resources for Parents tab below may have some useful links.

With support and imagination your child’s teacher should be able to make these important parts of school life inclusive. Taking part in physical activity at playtime is often where friendships are formed and reinforced. Being included helps to raise self-esteem and confidence. Talk to your child’s teacher and any specialist staff about how any plans forincluding your child are progressing and check in with your child to see what they think:

  • How was playtime today?
  • Who did you play with today?

Your child’s physio might be able to suggest appropriate PE activities for your child.

Activity Alliance / Inclusive PE Activity Cards – provide education staff with the knowledge, skills, and confidence to plan and deliver inclusive and accessible PE sessions.

 MDUK has a page about support with education and Education Guidelines (pdf booklet) published in September 2016, but still useful:

  • Chapter 11 Page 93 explores options for PE.
  • Chapter 12 Page 105  explores options for Playtime.

As long as there is good planning your child should be included in all school trips.  You may find some tips and ideas from parents/carers will help with this

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All children who have SMA will have medical appointments they need to attend. For many they will be frequent. Many will also have planned and unplanned hospital admissions. It is important you keep your child’s school as up to date as possible about any of these.

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Unfortunately, children with health conditions are sometimes more at risk of being bullied than their peers, so it can be useful to be aware of the support available.

If at any time you think your child is being bullied, encourage them to talk to their teacher as well as talking to the teacher yourself. Schools are required to have a whole-school approach to dealing with bullying and should respond immediately to any approach you make.

These organisations provide support and information:

Grace (mum of Sonny who lives with SMA) and our host Ross Lannon (an adult who has SMA) share their insights and experiences on the social, emotional, and academic aspects of transitioning to secondary school in this Living with SMA podcast:

Recorded: June 2023

Moving from Primary to Secondary School is a big event and change for any child, but if you have a child who has SMA, the transition can be even more of a challenge as there is even more to think about.

‘Start early’ is probably the best advice. Talk to your child’s teacher and the Special Educational Needs Co-ordinator (SENCO) or equivalent as they will have a good idea of what schools in the area can offer.

Most schools will have open days you can attend the year before your child needs to apply for a place, so you should be able to get the answers to some key questions. If you think your child may become anxious or unsettled, you can do this initial work without them:

  • Which schools are possible?
  • Do any of them specialise e.g. in arts or sciences
  • How would that fit with your child’s interests?
  • Revisit the questions you had when you chose a primary school – see:

Getting Ready for School – England

Getting Ready for School – Northern Ireland, Scotland, Wales

You will then be in a good position to look at a shortlist with your child and have time to make visits, have discussions, make your application and have confirmation of a place. This will give your child’s current and new school time to plan a smooth transition.

Explaining SMA

Information About SMA – may be useful when talking to schools.

Talking to Children about SMA – may be a useful section to look at.

SMA UK Publications – Smasheroo is for younger children. There are also two other books from 2016 for children ages 8 – 12 years written before treatments started to be funded by the NHS that are otherwise still factually correct.

Organisations and Publications Offering Information, Support and Advice:

ACE Education – Phone: 0300 0115 142 – Advice and information on education issues for children aged 5-16 years old in state education in England.

Contact – Phone: 0808 808 3555 – information and support to families who have a disabled child.

Council for Disabled Children – Phone: 0207 843 1900 – work to influence Government policy and local agencies to put policies into practice, and provide guidance to parents and carers on issues that affect disabled children, including what educational support is available.

Independent Panel for Special Education Advice (IPSEA) – free legally based advice to families who have children with special educational needs, including information and advice on the educational support available.

Contact / Parent Carer Forums – groups run by parents and carers of disabled children from a local area in England. Their aim is to make sure that services in their area meet the needs of disabled children and their families.

SENDIASS – Special Educational Needs and Disabilities Information Advice and Support Service (SENDIAS): a free, impartial and confidential independent from local councils. For:

  • parents or carers of a child or young person with SEN and / or a disability
  • young people up to the age of 25 with SEN and / or a disability.

For your local service, visit this page.

SOSSEN – Phone 0208 538 3731 or 0300 302 3717 – independent helpline for special educational needs as well as providing tips and information sheets for parents.

Gov.UK / Special educational needs and disability: A guide for parents and Carers 

Activity Alliance – provide inclusive PE training and resources for educational staff and others across the UK

Centre for Studies on Inclusive Education (CSIE) – information for schools on inclusive education.

SEND Gateway – an online portal offering educational professionals free, easy access to information, resources and training for meeting the needs of children with Special Educational Needs and Disabilities (SEND).