Chronic illness - coping at school

Starting primary school, or moving up to secondary school, can be a challenging time for any student and family. It can be even harder when the student has a chronic (ongoing) health condition. To get the most out of their schooling, students with a chronic illness need ongoing, coordinated support from their families, their schools and their medical carers.

Chronic illness in children#

Chronic illnesses are often associated with older people rather than children. However, a small but significant number of children live with chronic conditions. The most common is asthma, but others include diabetes and cancer. Cerebral palsy, epilepsy and cystic fibrosis, along with musculoskeletal disorders and conditions affecting sight, hearing and allergies, affect smaller numbers of children.

How chronic illness can affect schooling#

Students with a chronic illness may miss a lot of school – because they need to go to hospital, recover at home or attend regular medical appointments. This can lead to:

• difficulty completing work on time or taking part in exams
• decreased academic performance
• difficulty keeping up friendships at school
• difficulty getting around the school environment
• difficulty taking part in some activities, such as physical education or excursions
• feeling less confident and less motivated, which can also affect self-esteem and body image

Working together#

The family and the school need to work together to build and maintain good communication and cooperation. Everyone involved needs to understand what is needed and expected to support your child, and to be clear about what can and cannot be done, so that expectations are realistic and achievable.

Key things to remember are to share information, develop a care plan, keep up good communication, make changes where necessary, and seek extra support when you need it.

Sharing information#

You and your child should decide together what information about the condition should be shared, and with whom. Try to find a balance between giving your child adequate care and support and respecting their right to confidentiality and privacy. Work out:

• how much information should be shared with school staff, classmates and the wider school community
• who will be responsible for passing on the information, who will receive it, and how and when

The person passing on information could be your child, a family member, a friend, another parent chosen by the family, a staff member who works closely with the family, or a support group.

Developing a care plan#

In consultation with your child’s doctor, your family and the school, a school-based care or management plan should be developed. This plan should:

• be accessible to relevant staff
• be reviewed every year, or whenever there is a significant change to your child’s condition or treatment
• be communicated to relief teachers and other staff who occasionally care for your child
• set out which staff are responsible for which tasks, and what to do in an emergency

Education authorities often provide guidance to help schools develop a health support plan for students with a chronic illness.

Keeping up good communication#

Regular communication between the school and the family is the best way to monitor how your child is coping at school and at home – academically, socially, physically and emotionally. For younger children, writing daily messages in a home–school communication book can help. Teachers and parents can use it to note changes in energy levels, whether your child is keeping up with schoolwork, whether they are taking part in everyday activities, and how they are feeling generally.

When a student misses a lot of school, both parents and school should try to limit the effect on schoolwork and social life. It may help to send schoolwork home and to set up email contact. The school should also let you know promptly if your child has received any additional medical care.

Making changes where necessary#

The physical environment may need to be modified so that children with a chronic illness have full access to school facilities and activities – for example, ramps, rails, adaptive equipment or accessible toilets.

The academic environment may also need adjustment. This could include adapting the curriculum, work requirements, the timetable or subject choices. For students sitting major exams, you should check whether the school needs to apply for special exam provisions on your child’s behalf.

Your school may be eligible to apply for extra funding or support for a student with a chronic illness, and staff may need information or training about the specific condition, or about chronic illness in general. Discuss these options with your child’s school principal.

Special services and support#

A range of specialist staff may be available or called in to help your child. These can include visiting teachers, education support officers, psychologists, guidance officers, speech pathologists, social workers and other allied health professionals. Talk to your principal about whether any of these services are available.

• Visiting teacher services may work with students who have visual, hearing or physical impairments, as well as those with a chronic health condition, providing extra educational assistance, advice and support to children, their families and their schools.
• Many schools have dedicated staff – sometimes called student welfare coordinators, pastoral care coordinators or welfare officers – who help develop programs to meet the individual needs, interests and abilities of students who may find education challenging.
• Some hospitals and education bodies run programs that bring together health and education knowledge by partnering with schools, teachers and families, providing support and advice, and conducting and sharing research.

Education systems may also offer dedicated programs for students with disabilities and additional learning needs. These often involve an assessment of educational needs against set eligibility criteria, which may cover categories such as physical disability, visual impairment, hearing impairment, severe language disorder, severe behavior disorder, intellectual disability and autism spectrum disorder. If your child is eligible, the school is usually responsible for setting up a support group to monitor their progress. Such a group can include a parent, an advocate, a teacher, the principal and, if appropriate, the child.

Some organizations also run educational “catch-up” programs that provide tailored tuition for children who have missed school because of serious illness. Parents usually need to apply for these, and it is best to apply as early as possible, as processing applications and allocating a suitable tutor can take time.

Key points#

• Beginning primary school, or moving to secondary school, can be a challenging time for any student and family.
• Students with a chronic illness may miss school because they need to go to hospital, recover at home or attend regular medical appointments.
• The family and the school need to work together to establish and maintain good communication and cooperation.
• Remember to share information, develop a care plan, keep up communication, make changes where needed and seek extra support.

Where to get help#