Youngsters and younger folks with extreme advanced wants require coordinated well being, social and schooling providers, says NICE in draft guideline | Information and options | Information

The draft policy is based on the principles and requirements of the Code of Conduct for Special Educational Needs and Disabilities (SEND) and will help professionals from all health, social and educational services work together to provide 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 center 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 adolescents with severe complex needs from an education, health and care (EHC) assessment.

Dr. Paul Chrisp, director of the NICE Center for Guidelines, said: “It is vital that children and adolescents with severe complex needs, as well as their families and carers, have access to shared services that provide them with the support they need. Without efficient coordination, people can be passed from service to service as needed and important information about the support needed can slip through the cracks.

“We know that professionals in the three services are already doing a lot to support children and young people with serious, complex needs. Building on the SEND principles, we hope that this draft guideline can provide a blueprint for effective care to help children and adolescents with severe complex needs achieve their life goals. “

The draft guideline recommends taking into account the preferences of the child or young person when planning meetings with the child or young person, their families and their team. This includes holding the meeting at a time that is convenient for the person, using their preferred communication format, and asking them if they would like to bring siblings or friends to the meetings.

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

Services should jointly coordinate and agree the content of education, health and social plans and ensure that the plan works as a whole. You need to verify that the child or teen and their family or caregivers understand and agree to the plan.

The draft recommendation outlines how the disabled child or young person can be supported in participating in society, especially if it is not a question of work or training. Local authorities should consider developing and funding group activities such as sports and theater as part of their short break offerings.

The draft guideline also recommends that the preparation of the child or adolescent for transition into adulthood be included in the EHC plan from year 9 onwards. It also includes recommendations for technical assistance, including on environmental adaptations and accessibility, communication aids and training for public transport.

This guideline was a joint recommendation of the Ministry of Health and Social Affairs and the Ministry of Education.

The consultation is open until September 14th. The draft directive can be read here.


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