NICE have opened consultation on its draft guideline on disabled children and young people (up to the age of 25) with severe complex needs.

The guideline is built on the principles and requirements set out in the SEND code of practice and aims to help professionals across health, social and education services to work together to deliver the best care for disabled children and young people with severe complex needs.

NICE say that 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.

For example, they recommend that when planning for meetings with the individual, the team should take the child or young person’s preferences into account. This includes asking them whether they’d like to bring along family or friends, using their preferred communication format and holding the meeting at a time that suits them.

Children and young people with disabilities should be supported to participate in social activities

The guideline further recommends that services should coordinate and agree the content of education, health and social care plans together and make sure the plan works as a whole. As above, they must also check that the child or young person and their family or carers understand and agree with the plan.

Additionally, the draft says children and young people with disabilities should be supported to participate in social activities, particularly if they are not in work or education. Local authorities should therefore consider developing and funding group activities, such as sports, as part of their short break services.

The draft also states that the EHC plan (from year nine onwards) should include advice on how to prepare children and young people for the transition into adulthood, as well as recommendations for specialist support such as environmental adaptations, accessibility, communication aids and training for public transport.

“We hope this draft guideline can provide a blueprint for effective care”

Dr Paul Chrisp, director of NICE’s Centre for Guidelines, 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 consultation will be open until the 14th September.