As your child’s SMA will have an impact on their physical abilities and health, this may affect their ability to access learning opportunities in pre-school, nursery and school. They will be entitled to be assessed as a child with ‘special educational needs and disabilities’ (SEND or SEN for short) and receive the support they need.

This section takes you through what you can expect during their early years and what questions to ask.

Free Education & Childcare Age 3-4

Whether or not they have an Education Health & Care Plan (EHCP) (see below), many children who have SMA will have health needs that need careful management and monitoring. This may be from early on or develop later. It’s important anyway that your child’s school is aware of your child’s diagnosis and the current and possible impact your child’s SMA may have – especially what the signs would be that would warn school if your child needed urgent medical attention and what to do in case of any emergency.

Your child should have an individual healthcare plan agreed with you and the health professionals who support your child. When your child starts school, it makes sense that this should also include the school nurse and /or whoever has responsibility for First Aid and health. This plan (sometimes called a Medical Plan by the school) will set out who will give any medication, what to do in an emergency and any other special arrangements that need to be made, for example the need for your child to use an accessible toilet, assistance with any suctioning or non-invasive ventilaion. It’s important that the plan is shared with and understood by all staff. See also: Regular and Emergency Care on this page.

The support your child needs to achieve the outcomes you and your child need and want may be met by a Special Education Needs Plan. The school should involve you fully in discussions. They should:

• analyse your child’s difficulties.
• identify the extra support your child needs.
• put the support in place.
• regularly check how well it’s working so that they can change the amount or kind of support if they need to.
• give you clear information about the extra help your child is getting and meet with you at least three times a year to review how your child is progressing and what the next steps will be. This should be in addition to the usual parents’ evening meetings.
• provide you with a report at least once a year on your child’s progress.

If needed, the school can ask specialist support services to carry out assessments and provide further advice and support.

It may be that your child needs more support than an SEN Plan can provide in which case you can apply for an Education, Health and Care Plans – see the tab below.

See here for more information.

See here for more information.

Secondary schools admit children from the ages of 11 through to 16 – Key Stages 3 and 4. If the school has a Sixth form, children may stay there until they are 18 though there are other options from age 16 (see Transition & Planning Ages 13 – 18 on this page).

State secondary school applications – often made on line via the Local Authority – usually need to be made by the end of October in the year a child turns 11.

Moving from Primary to Secondary School is a big event and change for any child, but if you have a child with 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) 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 Things to Ask and Look For on this page.

You will then be in a good position to look at a shortlist with your child and have time to make visits, have discussions and make your application. You should have your place confirmed by the beginning of March giving your child’s current and new school time to plan a smooth transition.

Watch "Transitioning into School Part 2 (Secondary school)" from our Living with SMA podcast, featuring Grace (mum of Sonny who lives with SMA) and our host Ross Lannon (an adult who has SMA) sharing their insights and experiences on the social, emotional, and academic aspects of transitioning to secondary school:

Recorded: June 2023

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).