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Supporting children and students with osteogenesis imperfecta

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

About osteogenesis impercta

Osteogenesis imperfecta (OI) is a genetic condition causing bones to be fragile. 

Some children with mild OI may need little to no support while others may use mobility aids. 

Moderate to severe OI can result in significant pain limiting daily living and often resulting in two or more fractures per year. Children may also have hearing loss, brittle teeth, spinal curvature and respiratory difficulties.    

Health support plans and agreements

If the child or student has an eating disorder, 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 eating disorder-specific plans and agreements listed on this page. 

Care plan 

Parent or caregivers should complete an osteogenesis imperfecta care plan (DOC 174KB) with their child’s health professional and return it to their school, preschool or care provider.

Children with OI may also need assistance for toileting and transferring from mobility devices. A continence care plan (DOC 215KB) and transfer and positioning care plan (DOC 432KB) may also need to be completed by the health professional in consultation with parents.

Education and care staff who regularly engage with the child or student will need to know what is in each plan.

Emergency care and first aid plan

An individual first aid plan (DOC 167KB) should be completed by a health professional where the first aid response is not the standard first aid response for osteogenesis imperfect.

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 

OI management is different for each child. Training and support must be aligned to their specific care plan and support agreement.

Novita may be able to provide training or consultancy to support the inclusion of children with OI in education and care services. Phone 1300 668 482 or email training [at] novita.org.au

The Royal District Nursing Service (RDNS) provides health support training for education or care services to help support children with OI. For training enquiries phone 1300 364 264 or email bookings.disabilities [at] rdns.org.au.

How parents and caregivers can help

Parents or guardians must:

  • notify the school, preschool or care service if their child has osteogenesis imperfecta
  • 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.

Contact

Disability and Complex Needs Team

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