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Spina bifida and hydrocephalus health support for children and young people

On this page

This page outlines how education staff, care services, parents, guardians, and health professionals work together to manage a child or student with about spina bifida and hydrocephalus in education and care settings.

About spina bifida and hydrocephalus

Spina bifida is the most frequently occurring permanently disabling birth defect that affects the development of the spine, spinal cord and the brain. Hydrocephalus is when fluid accumulates in the brain. Around 90% of people with spina bifida have hydrocephalus.

Learn more about spina bifida including:

  • causes
  • effects
  • prevention and treatments
  • support information.

Health support plans and agreements

If the child or student has spina bifida and hydrocephalus, the education or care service should refer to health support planning for children and students in education and care settings to ensure that the appropriate plans and agreements are in place. This is in addition to the spina bifida and hydrocephalus-specific plans and agreements listed on this page. 

Care plan 

Health professionals should complete the following forms with the child’s parent or guardian and return it to their school, preschool or care provider.

Emergency care and first aid plan

An individual first aid plan – HSP124 (DOC 167KB) should be completed by a health professional where the first aid response is NOT the standard first aid response for spina bifida or hydrocephalus.

All education and care staff must provide first aid measures following any care plan or support agreement and contact emergency services if required.

Training for education and care staff 

Staff supporting children with spina bifida and hydrocephalus should be trained to the specific requirements documented in the care plan and support agreements for that child.

The Royal District Nursing Service (RDNS) provide disability training and support. For training enquiries phone 1300 364 264 or email: bookings.disabilities [at] rdns.org.au

Novita also provides training to support the inclusion of children with spina bifida in education and care services. For more information phone 1300 668 482 or email training [at] novita.org.au

How parents and caregivers can help

Parents or guardians must:

  • notify the school, preschool or care service if their child has spina bifida or hydrocephalus
  • complete health care plans and agreements with their health care professionals and provide them to the school, preschool or care service
  • provide required medication to the school, preschool or care service.

If a medication agreement is in place, parents and caregivers must fulfil the roles and responsibilities outlined on the medication management and care page.

How health professionals can help

Health professionals support schools, preschools, care services and families by helping to develop the care plan and any supporting medication and care agreements.

Disability advice and research

Phone: 8226 0515
Email: education.health [at] sa.gov.au