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Spina bifida and hydrocephalus

Information on how education and care services provide proactive and reactive management for children and young people diagnosed with spina bifida.

Spina bifida is the most frequently occurring permanently disabling birth defect. It 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. 

The spina bifida and hydrocephalus in education and care procedure (under development) will describe how education and care services manage children and young people with spina bifida.

Care plan

The spina bifida care plan HSP370 (DOC 176KB) provides instructions for the individual management of spina bifida.  These are completed by a treating health professional.

The hydrocephalus and shunt care plan HSP371 (DOC 1.21KMB) is completed by a treating health professional to support education and care staff to manage children and young people with hydrocephalus.

A continence care plan HSP230 (DOC 215KB) and/or transfer and positioning care plan HSP220 (DOC 432KB) may also be required to support a child or young person with spina bifida.  These are completed by a treating health professional.

Health support agreement

Where a child or young person is identified to have spina bifida a health support agreement HSP120 (DOC 243KB) and safety and risk management plan HSP121 (DOC 147KB) should be completed. These are completed by the parent and education or care service to document specific risk minimisation strategies, individualised management and treatment for the child in the context of the education or care service. 

The Health Support Agreement should clearly identify cultural, spiritual and language needs.

Medication agreement

Where medication is prescribed and required to be administered during attendance in an education or care service a medication agreement HSP151 (DOC 142KB) must be completed by a health professional. 

Refer to medication management for further information.

First aid

All education and care staff are required to provide first aid measures following any care/management plan or support agreement and contacting emergency services if required.

Individual first aid plan

An individual first aid plan HSP124 (DOC 190KB) should be completed by the treating health professional to describe clear instructions for the management of the child or young person.

Managing spina bifida in education and care

With appropriate planning and support children can participate safely and fully in education and care activities.

Students with spina bifida may:

  • use splints, casts, leg braces, canes, crutches, walkers, or wheelchairs
  • have poor eye–hand coordination, which can make things like handwriting difficult
  • need extra time moving around classrooms, between classes, and throughout school
  • need special seats and desks or tables, as well as assistive technology and extra space for wheelchairs or other equipment
  • have learning difficulties and problems with memory, attention, comprehension, and organization
  • need extra assistance and time to complete assignments
  • miss class time due to medical appointments or surgeries
  • need frequent bathroom breaks throughout the day
  • be allergic to products that contain latex (natural rubber).

To support children with spina bifida education and care services may be required to:

  • provide trained staff to supervise or assist the child
  • continue school community engagement with the child during absence due to surgery or illness
  • make special considerations during exams and tests
  • make special considerations when planning sport, excursions, camps and other activities
  • ensure class rooms are accessible.

Training and education

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 contact RNDS:

  • Phone: 1300 364 264
  • Email: bookings.disabilities [at] rdns.org.au

Novita may be able to provide training or consultancy to support the inclusion of children with spina bifida in education and care services. Contact Central Intake Novita:

  • Phone: 1300 668 482
  • Email: training [at] novita.org.au

Resources

Care plans

Health support agreement

First aid

HSP124 Individual first aid plan (DOC 190KB)

Medication management

Planning and management tools

The following resources are developed by Spina Bifida Hydrocephalus Queensland.

Contact

Disability and complex needs team

Phone: 8226 3620
Email: education.health [at] sa.gov.au