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NICE yesterday (2 August 2021) opened consultation on its draft guideline on disabled children and young people up to 25 with severe complex needs. The draft guideline will support joined up and coordinated health, social and education services for these people and their families.

The draft guideline is built on the principles and requirements set out in the Special Educational Needs and Disability (SEND) Code of Practice, and will help professionals from across the health, social and education services to collaborate to deliver the best care for disabled children and young people with severe complex needs.

The goals, ambitions and interests of the disabled child or young person should be at the centre of planning and decision making, and their needs should be considered as a whole.

The draft guideline recommends that the absence of a specific diagnosis should not exclude disabled children or young people with severe complex needs from receiving an education, health and care (EHC) assessment.

Dr Paul Chrisp, director of NICE’s Centre for Guidelines, yesterday said:

“It’s vitally important that children and young people with severe complex needs, and their families and carers, have access to joined up services that can provide them with the support they need. Without efficient coordination, people can be passed from service to service depending on their needs and important information about the support they require can slip through the cracks.

“We know professionals across the three services are already doing a huge amount to support children and young people with severe complex needs. By building on the SEND principles, we hope this draft guideline can provide a blueprint for effective care to fully support children and young people with severe complex needs in achieving what they want to in life.”

The draft guideline recommends that when planning meetings with the child or young person, their families and their team, the team should take the child or young person’s preferences into account. This should include holding the meeting at a time suitable for the person, using their preferred communication format, and asking them whether they’d like to bring a sibling or friend along to meetings.

Education, health and social care services should consider jointly developing training for parents and carers to help them understand and meet their child’s needs such as supporting their preferred style of communication.

Services should coordinate and agree the content of education, health and social care plans together and make sure the plan works as a whole. They need to check that the child or young person and their family or carers understand and agree with the plan.

The draft recommendations outline how to support the disabled child or young person in participating socially, particularly if they are not in work or education. Local authorities should consider developing and funding group activities such as sports and theatre as part of their short break services.  

The draft guideline also advises that preparing the child or young person on transitioning to adulthood should be included in the EHC plan from year 9 onwards. It also includes recommendations for specialist support including on environmental adaptations and accessibility, communication aids, and training for public transport.  

This guideline was a joint referral from the Department of Health & Social Care and the Department of Education.

The consultation is open until 14 September. The draft guideline is available to read here.