Why this work is important

Now that we have more children benefiting from drug treatments and reaching pre-school and school age, we’re hearing that many parents are facing a range of issues. These include finding a local nursery or school, which will welcome their child, make any necessary adaptations and include them in all activities.

Working with experienced parents and professionals, we’re aiming to find the best ways to overcome the many issues to overcome such as inclusion, accessibility, 1:1 support and ECHP plans.

What we are doing now

Meeting with members of clinical teams from across the UK to discuss what safe and inclusive mainstream schooling might look like for children living with SMA.

Meeting families via Zoom we have realised how education systems across the UK differ enormously. From funding pathways to admission, 1:1 support and ECHPs, there does not seem to be one standard of care for all. Some families face barrier after barrier to see their children included safely within the mainstream curriculum , whilst others have experienced excellent inclusion through reliable support and open lines of communication.