We are a small group of parents and professionals who work to support Barnet take a strategic lead to help early years settings, schools and further education colleges and provision to improve outcomes for our children, young people and their families. We welcome members so please contact us if you would like more information.

We have produced Levels of Expertise - Supporting Children and Young People with Down syndrome in Primary and Secondary Schools. Our document outlines the best practice for schools in supporting children and young people with Down syndrome. It focuses on:

  • Planning,

  • Curriculum,

  • Social, Emotional and Behaviour Needs,

  • Personal Support Needs

  • Transition/Activities

The levels of expertise are a summary, they present three levels that schools can use for checking their offer and planning next steps. Bronze is level One and details standards of practice for schools to make sure they have a good offer for their pupils with Down syndrome. Level Two, Silver, outlines a more developed offer of support and expertise. Gold, level Three, outlines excellent practice for children and young people with Down syndrome.

Please share the levels of Expertise, we hope you find them a useful summary. Please do contact us if you have improvement suggestions.

Health Care or Medical Care

Barnet’s Approach to Integrated Care for Children with Down Syndrome


Which Type of School is Best for Children and Young People with Down Syndrome?

This document gives information about school placements for children and young people with Down syndrome. We have summarised the available research to help inform parents and professionals.

We believe every family has the right to decide what type of school is right for their child. It can be hard for parents to weigh up the challenges and opportunities experienced, and to decide between mainstream and special needs schools. Parents may, or may not, find our information about research useful. They need to think about their own child and what an educational setting may offer.

It is important that professionals in schools and the Local Authority are aware of research about school type so that they can provide advice and make informed choices. We want our families, and our schools of all types, to have information so that they can best support their children and young people with Down syndrome.

Combined Care Pathway for children and young people with Down syndrome

In Barnet there are approximately 6 live births each year of babies who are diagnosed with Down Syndrome. This Pathway was developed in partnership with parents, carers, education, social care and health professionals and those living with Down Syndrome (Spring 18 to Winter 2020). It is strategically managed via the SEND Development Group and Partnership Boards and reviewed annually and updated accordingly, through the Barnet Leading Edge Group (LEG) for Children and Young People with Down Syndrome, review date 9th December 2020.  If there are any changes that should be made please email Dr E. Rachamim: erachamim@nhs.net

Scope of the Combined Care Pathway

“You have absolutely no idea the difference having a team invested in your child makes.  This pathway brings expertise in Down syndrome along with an entire network of people working together.  Seriously, it’s amazing!  This is a huge amount of work and we know a lot of it was in people’s own time - it is an incredible achievement in such a short space of time.  Do not underestimate how important this piece of work is and most importantly the difference it will make to so many children and their families”.
Anna Petsas, parent of child with Down Syndrome.

This pathway will enable people to navigate their way through the relevant health, and integrated services to ensure no one who has Down Syndrome gets ‘left behind’. It is effectively putting all the health and therapies information pertinent for people with Down Syndrome in one place emphasising the need for combined care. It seeks to clarify additional services that may need to be involved in the care of a person with Down Syndrome because of some common health difficulties experienced by some people who have Down Syndrome and does not replace those services that all children and adults have access to; e.g., GP services, Midwifery, Health Visiting, School Nursing, Therapy Services, Community Health Services and Hospital Services. The pathway signposts education and social care services.