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Osteogenesis imperfecta

Information on how education and care services provide proactive and reactive management for children and young people with osteogenesis imperfecta (OI).

The Osteogenesis imperfecta in education and care procedure (under development) will describe how education and care services support children and young people with osteogenesis imperfecta.

Osteogenesis imperfecta (OI) means ‘bones formed imperfectly’.  It 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.    

Care plan

An Osteogenesis imperfecta care plan HSP380 (DOC 174KB) is completed by a health professional in consultation with parents for children diagnosed with OI that require support in education and care services. 

Children with OI may also require assistance for toileting and transferring from mobility devices.  A continence care plan HSP230 (DOC 215KB) and/or transfer and positioning care plan HSP220 (DOC 432KB) may also be required to be completed by the health professional in consultation with parents.

Health support agreement

Where a child or young person has been identified to have OI 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 plan or support agreement and contacting emergency services if required. Advise the ambulance officer the child has OI if they are attending.

Individual first aid plan

An individual first aid plan HSP124 (DOC 190KB) is completed by the health professional where the first aid response is NOT the standard first aid response for that health condition.

Managing OI in education and care

Moderate to severe OI is a recognised disability that will require reasonable adjustments for children attending education and care services.  With appropriate planning and support children can participate safely and fully in education and care activities.

Children with OI may have varying degrees of support and assistance and different levels of mobility due to fractures, surgery or treatment.  As a result the health support agreement may require frequent review and adjustment.  

To support children with OI education and care services may be required to
•    provide trained staff to supervise or assist 
•    ensure accessibility for children with mobility aids
•    make special considerations when planning sport, excursions, camps and other activities
•    adapt physical activities to involve children with OI where appropriate
•    accommodate hearing loss
•    support the child’s continuing education during long absences due to fractures or surgery

Training and education

OI management is not the same for each child.  Training and support must be individualised to each child and the specific requirements documented in the care plan and support agreement for that child.

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

The Royal District Nursing Service (RDNS) may be able to provide health support training for education or care services where a child is attending with OI.  For training enquiries contact RNDS 
•    phone 1300 364 264
•    email //bookings.disabilities [at] rdns.org.au">bookings.disabilities [at] rdns.org.au

Resources 

Care plans

Health support agreement

First aid 

HSP124 Individual first aid plan (DOC 190KB)

Medication management

Planning and management tools

Osteogenesis imperfecta Foundation: An educators guide to students with OI
 

Contact

Disability Policy and Programs

Phone: 8226 1769
Email: education.specialeducation [at] sa.gov.au