Osteogenesis imperfecta in primary school

Starting primary school

The transition into primary school for children with osteogenesis imperfecta (OI) needs to be planned and well managed. It is advisable to arrange a meeting well in advance of the child starting school. Attendees should include key workers involved in the child’s education, relevant health professionals and parents. This gives everybody the opportunity to get to know each other, highlight specific needs that the child has and plan how these needs are going to be met. If the child with OI uses a wheelchair or a walking aid, the environment should be assessed to ensure that the school is accessible, often an occupational therapist can assist in this area.

It is advisable at this initial meeting for you to develop a management plan, which should include:

• School Entry Plan
• Care Plan
• Fracture Management Plan

Plans should describe the student’s needs and how the school plans to meet these needs. They must also detail procedures to be followed if an emergency arises. Procedures need to be agreed between the parent and the school, following consultation with the relevant health care team. Plans should be reviewed annually or if the child’s health needs change. The plan should identify the key people and their roles in the event of an emergency. For more information, please refer to the Brittle Bone Society Fracture Management Guidelines.

The Care Plan

• Describe the child’s needs and identify how needs are to be met.
• Details procedures in the event of an emergency.
• Identify key people and corresponding roles in the event of an emergency.
• Review annually or if the child’s needs change (such as if it is known that a child is having planned surgery).
• Please note that plan must be agreed upon between parent and carer and the school following consultation with relevant health professions.

Risk Assessment

It is the school’s responsibility to carry out a risk assessment prior to the pupil starting school. This should detail all potential risks within the school environment and could be reviewed on a termly basis. Carry out risk assessments for school trips, activity days, special events or a specific manual handling risk assessment following a fracture. The local therapy team may be able to offer general advice if required.

Educational Health Care Plan and Additional Support Needs

Consider that children with OI may require educational and practical support to access the curriculum. This need is individual to the child. Without this additional support they may not achieve their full potential. Children should be offered support or supervision for break times, lunch times, physical activity sessions and when moving around in busy classrooms and corridors. Independence and inclusion should always be encouraged. Children may have additional needs beyond their OI diagnosis.

It may be possible to offer extra staff support from within the educational setting, with applications for additional funding from the local offer. Seek support from key workers, professionals and parents to make sure appropriate recommendations are made. This may form part of the evidence for an education, health and care plan (EHCP) application, however may not be applicable to all children and therefore should be guided by the education setting in the first instance.

Supporting children in school

Learning considerations

Absence

During their childhood and adolescence a child may miss school due to both planned and unplanned treatment of fractures, surgery, out-patient appointments and medical treatment of their condition. This can often necessitate a number of stays in hospital. Forward plan for schoolwork and catch-up support may be helpful. Create plans to return to school as soon as possible after any absence event. In exceptional circumstances of prolonged absence, seek home schooling as soon as possible.

Hearing loss

Hearing loss can be a medical complication of OI which can occur at any age. This could affect interaction within the classroom, school environment, behaviour and ability to learn. Children should engage with routine screening in foundation stage. Parents and carers should be the primary contact for concerns regarding hearing loss.

Personal, social and health education

OI impacts a child’s health and well-being. It can affect self-esteem, self-confidence, friendships, play and participation. As with any child, teachers need to be vigilant about the potential for bullying and the risk of the child with OI being excluded from peer directed activities. There are many creative ways to support a child and for their peers to learn more about OI, be it self-directed or teacher led. It is important to consult with the child and potentially their family prior to any teaching or awareness sessions.

Drawing and writing skills                               

• Due to increased ligament laxity in their joints, often affecting their fingers, children with OI may have fatigue, joint aches and pains. This could affect the quality and quantity of their work and lead to a slower speed of writing.
• The child may benefit from pacing these activities, by incorporating rest and stretch breaks into the activity.
• Children with hypermobile finger joints may benefit from chunkier pens or pencils, or the addition of pencil grips. It is important to recognise handwriting issues early on. If you are concerned about this an occupational therapist can often complete a more formal assessment and make recommendations.
• Click here for ideas for fine motor skill building for children with OI.

Tiredness, aches and pains

• A child with OI may tire more quickly than other children of a similar age. They may experience aches and pains, especially following physical activity.
• Pacing activities and giving the child the option of ‘time out’ for resting may help.
• At times children might require simple pain relief medication such as paracetamol to manage their aches and pains. Create a plan for children to take this in school when required and follow local procedures for storage and administration.

School environment

Consider the current physical abilities of the child, but also their potential for fractures. In addition, new injuries may lead to a child being more vulnerable to falls. They may have periods of time in cast and require the use of a walking aid or wheelchair during which time they will require more support or space than usual. Key areas for consideration should be:

Toilet areas 

• An accessible toilet and sink may be required, particularly if the child uses a wheelchair or walking aid. However, these spaces are often designed with adults in mind and may need further adaptions for a younger child.
• Specially adapted equipment, grab rails, small step can facilitate safe and independent toilet transfers and hand washing.
• Consider non-slip flooring.
• Check areas to make sure it is clean and dry before the child uses it.
• An occupational therapist (OT) can help identify solutions to help facilitate independence.

Cloakroom and corridors  

• Place clothes pegs at a height accessible to the child and preferably at the end of the line to prevent the child being pushed or knocked during busy periods.
• Keep cloakrooms and corridors clear of clutter.

Tables and chairs 

• Sit children on an appropriate size chair with feet flat on the floor and bottom to the back rest.
• Children may require some form of specialist seating for use in the classroom. Or more simple measures such as a cushion and foot block may be provided or recommended. Usually, an occupational therapist or a physiotherapist will have been involved in this process and should be able to advise further.
• When a child is using a wheelchair, make sure the table is accessible and at a good working height for them.

Floor time and assemblies

• Sometimes a child may be more comfortable sitting on a small chair rather than the floor to reduce aches and pains. If a child is sitting on the floor, consider positioning them near a member of staff or at the edge of the group to minimise accidents such being stood on or tripping over others. Consider a chair for them to sit on if the time required to sit is longer then 10 to 15 mins, or if completing activities such as writing on a white board.

General housekeeping

• Keep floors dry and as clutter free as possible to minimise the risk of trips and falls.
• Help them with doors that are heavy and difficult to open.

Activities and social opportunities

Playtimes and lunchtimes               

• Provide additional supervision, especially for the younger child as they are often not yet aware of risks.
• Supervision should continue as the child gets older and becomes more aware of risks, but may be required from a sensible distance to allow social development, depending on the needs of the individual.
• Provide a calmer area where the child can go with a few friends and undertake other play activities if they wish.
• Consider seating in the dinging room, if a child has a specialist seat in the classroom it can be beneficial to have this available at lunchtimes also. Tables with integral stools may be unsuitable. Use a separate chair with back rest, choosing an alternative table if the table is too high. Sit alongside peers.
• As with handwriting children may struggle with the use of cutlery. If this is an area where you notice a child is struggling, then an occupational therapist may be able to complete an assessment.

School outings

A child that can normally manage short distances walking around the school may not manage as well on trips that involve moderate walking or activities. Adopt strategies to include regular breaks, the use of a buggy or wheelchair or reducing walking distances. Plan with parents and carers in advance of these trips and do a risk assessment.

School trip should be accessible and inclusive. Consider transport arrangements, particularly if they use a wheelchair.

Physical education 

• The benefits of exercise are well documented for general health and well-being.
• Increasing general fitness can help manage fatigue.
• Encourage children to participate in PE lessons with reasonable adjustment and modify activities to allow participation where required.
• Running practise can be a good activity for some children with OI, but avoid running on uneven or unpredictable surfaces. Allow the child to report how they feel and offer rest breaks.
• Encourage children to climb down rather than jump down from any apparatus.
• Further guidance can be sought from a physiotherapist.

Please see our resource on including children with osteogenesis imperfecta in PE lessons.