Osteogenesis imperfecta in secondary school

Starting secondary school

The transition from primary into secondary school needs to be planned and well managed. We advise arranging a meeting, well in advance of a child changing school so that the key people involved in their education can meet their and parents and carers, and vice versa. This gives everybody the opportunity to get to know each other, highlight specific needs that a person has and plan how these needs are going to be met.

If a child with osteogenesis imperfecta (OI) is a wheelchair user, professionals should assess the environment to make sure that the school is accessible. Often an occupational therapist can assist in this area.

Depending on an individual child’s needs, it may be useful at this initial meeting to develop a management plan specific to your school.

Care plan

You will need a plan to describe the person’s needs and how the school plans to meet these needs.

The plan must:

• include details if there is an emergency
• be agreed plan between the parent or carer and the school, after a consultation with the relevant medical practitioners
• be reviewed yearly or if the child’s health needs change
• 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.

Risk assessment

It is the school’s responsibility to carry out a risk assessment before a child starts school.

Detail all potential risks within the school environment and consider review on a termly basis. Carry out additional risk assessments for school trips and activity days, special events or a specific manual handling risk assessment after a fracture. The osteogenesis imperfecta team at the hospital may be able to offer general advice if needed.

Educational health care plan

A child may have had additional support within their school setting. Often this additional support may have been necessary for break times, lunch times and physical activity sessions.

This is very individual and specific to the child and is most often related to their physical, medical and safety needs as opposed to learning needs. These support needs may continue into secondary school and will require reviewing on a regular basis.

Absences

Planned absences

Due to the nature of the condition, a child with osteogenesis imperfecta will likely have planned periods of absence from school for essential medical appointments and to be given medication.

Make sure to plan for absences and make sure that all relevant work that will be missed during this time is given to the child or their family, giving them opportunity to continue with their school work.

Unplanned absences

Osteogenesis imperfecta can also be unpredictable in its nature. A child may also have unplanned absences from school due to a new injury or fracture. This may or may not require medical intervention. Maintain close communication with the family and provide essential work for them to continue with at home or hospital to make sure there are no gaps in their education.

Seek home schooling in exceptional circumstances of prolonged absence, as soon as possible.

Hearing loss

Hearing loss is a medical complication of osteogenesis imperfecta which can occur at any age and in children with any type of osteogenesis imperfecta. This could affect interaction with the classroom and school environment, behaviour and ability to learn. If you have any concerns with regards to this it is worth raising it with their parents or carers in the first instance.

Social relationships

Osteogenesis imperfecta impacts a child’s health, and it can affect self-esteem, self-confidence, friendships and participation.

People with osteogenesis imperfecta have the same needs as others to develop a healthy self-image and to understand their personal strengths, abilities, limitations and weaknesses. Secondary school plays an important role in the development of these skills especially as they progress into their teenage years.

As with any child, be vigilant about the potential for bullying and the risk of the child with osteogenesis imperfecta being excluded from peer-directed activities.

School environment

The school will need to consider the current physical abilities of the child, but also the potential that they have for fractures.

They may have periods of time in plaster and may need to use a walking aid or wheelchair and will need more support and space than usual. If a person is having difficulty with their mobility, they may need access to a lift for safety and to conserve energy.

Toilet and changing room areas

A wheelchair user will need a level access disabled toilet and sink.

They may need equipment, grab rails, and a small step to help them get onto the toilet, and to wash their hands. They need to feel safe whilst also feeling independent.

Changing rooms with showers may have wet floors which increases the risk of slips. Take caution in these environments to minimise these risks.

Lockers and corridors

Lockers (if able to be provided) should be at a height accessible to the child. Preferably at the end of a block of lockers to stop a child being pushed or knocked during busy periods.

They can have an early or late arrival and exit to and from classrooms to allow for safer travel in the corridors, and often it is nice if a friend can accompany them so they do not feel so isolated.

If lockers are not available, then it is sensible to allow children to leave heavy books within the classroom to minimise the amount they have to carry.

Tables and chairs

Often, children with osteogenesis imperfecta are much smaller than their peers, and may therefore have some form of specialist seating for use in the classroom. Usually an occupational therapist or a physiotherapist will have been involved in this process and should be able to advise further. If the child is in a wheelchair then the table needs to be accessible for them and at a good working height.

Physical education

Plan and risk assess PE lessons to consider their health and safety. Contact the hospital team or physiotherapist to give further advice if you are not sure a sport is suitable. Please see our resource on including children with osteogenesis imperfecta in PE lessons.

Science and technology

Seating for these lessons is usually a stool, more commonly with no back. Sometimes it may be necessary to consider an alternative option. Other difficulties may arise when using equipment within these lessons. Please seek the advice of the occupational therapist involved with this child, if this is a concern.

Fine motor skills and handwriting

Children with osteogenesis imperfecta may have upper limb deformity resulting from fractures, although hypermobility is often the main problem.

This can affect their grip, power, stamina and may therefore cause problems with handwriting. School should provide them with a laptop for longer pieces of work, extra time in exams or provision of a scribe may need to be considered. If you are concerned about this, an occupational therapist can often complete a more formal assessment and make recommendations for you to try.

Tiredness, aches and pains

Due to bone deformities, bone pain and joint hypermobility, people with osteogenesis imperfecta experience a great deal of pain and can tire much quicker than other people of a similar age, especially following physical activity.

The school should discuss how to manage these symptoms with each child, their parents or carers, and with the school nurse, as sometimes they also need medication.

Break times and lunchtimes

People with osteogenesis imperfecta tend to eat more slowly and can sometimes have problems with their teeth. You may notice that they take longer to eat their lunch. It is advisable for a child to enter the dining hall at less busy periods to avoid any unnecessary collisions or bumps.

Transport

It is not appropriate to expect a child with osteogenesis imperfecta to get on a busy school bus unless they have a guaranteed space on the lower floor with a friend. Families often help by transporting to and from school, but when that is not possible, appropriate school transport should be considered. This is particularly for the more severely affected people, or following a fracture.

School outings

A child who can normally manage short distance walking within the school environment may not manage as well on a trip that involves moderate walking or activities. If so, they may require more regular breaks or a wheelchair during these times. Please plan and prepare for this with parents or carers in advance of these trips and do a risk assessment.

Fire evacuation plans

Consider the safety of people with OI within the fire evacuation procedure in your school, especially when planning for evacuation from a second floor. Most lifts are not fire safe and cannot be used in the event of a fire. This should be done in collaboration with school teaching staff and estates team, manual handling coordinators and medical professionals involved in a child’s care. Involve the local fire service for advice.

Careers advice and work experience

This should be appropriate to the child’s interests as well as their physical capabilities. If they need support at school it is likely that they will need this support for work experience. It is important that any equipment needs are identified and addressed before starting the work experience placement. The physiotherapist and occupational therapist involved with the child will be able to support you further with this.

General advice

A person with osteogenesis imperfecta needs to have their physical and psychological wellbeing considered at all times.

If a child is receiving bisphosphonate treatment for their osteogenesis imperfecta they may tire and be in pain towards the end of each treatment schedule. For further information on this please refer to the bisphosphonate treatment resource.

Although a person with osteogenesis imperfecta may be restricted in some activities, they should still be included in all aspects of their education and school life.