Osteogenesis imperfecta in secondary school

Starting secondary school

The transition from primary into secondary school needs to be planned and well managed. It is advisable to arrange a meeting, well in advance of the pupil changing school so that the key people involved in the pupil’s 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 the pupil has and plan how these needs are going to be met.

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

Dependant 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

A plan will be needed to describe the pupil’s needs and how the school plans to meet these needs.

The plan must also include details if there is an emergency. This needs to be agreed between the parent and carer, and the school, after a consultation with the relevant medical practitioners. Plans should be reviewed every year or if the pupil’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.

Risk assessment

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

This should detail all potential risks within the school environment and could be reviewed on a termly basis. Additional risk assessments will need to be carried out 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

The pupil 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 pupil 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

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

For planned absences it would be best to make sure that all relevant work that will be missed during this time is given to the pupil or their family so they have the opportunity to continue with their school work.

Osteogenesis imperfecta can also be unpredictable in its nature, the pupil may also have unplanned absences from school due to a new injury or fracture. This may or may not require medical intervention. If this is the case then close communication with the family should be maintained and essential work should be provided for them to continue with at home or hospital to make sure there are no gaps in their education.

In exceptional circumstances of prolonged absence, home schooling should be sought as soon as possible.

Hearing loss

Hearing loss is a medical complication of osteogenesis imperfecta which can occur at any age and in pupils 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 in the first instance raising it with their parents or carers.

Social relationships

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

Pupils 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 pupil, teachers need to be vigilant about the potential for bullying and the risk of the pupil with osteogenesis imperfecta being excluded from peer directed activities.

School environment

The school will need to consider the current physical abilities of the pupil, 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 student 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 level access disabled toilet and sink will be needed if the pupil is a wheelchair user.

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 feel independent.

Changing rooms with showers may have wet floors which increases the risk of slips. Caution should be taken in these environments to minimise these risks.

Lockers and corridors

Lockers (if able to be provided) should be at a height accessible to the pupil. They should also preferably be at the end to stop the pupil 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 the pupil to leave heavy books within the classroom to minimise the amount they have to carry.

Tables and chairs

Often pupils 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 pupil is in a wheelchair then the table needs to be accessible for them and at a good working height.

Physical education

Please get in contact with their physiotherapist when planning PE lessons to make sure their health and safety is put first.

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. If this is a concern then please seek the advice of the occupational therapist involved with the pupil.

Fine motor skills and handwriting

Pupils 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. They should be provided 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, pupils with osteogenesis imperfecta experience a great deal of pain and can tire much quicker than other pupils of a similar age, especially following physical activity.

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

Break times and lunchtimes

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

Transport

It is not appropriate to expect a pupil 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 students, or following a fracture.

School outings

A pupil 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 the pupil 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.

Careers advice and work experience

This should be appropriate to the pupil’s interests as well as their physical capabilities. If they need support at school it is likely that they will need this 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 pupil will be able to support you further with this.

General advice

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

If the pupil 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 pupil with osteogenesis imperfecta may be restricted in some activities, they should still be included in all aspects of their education and school life.

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