Medical conditions

The following is an excerpt from the ebooklet Working with children with serious or chronic medical conditions by Murray Evely and Zoe Ganim.

The impact of a serious medical condition on a child’s education can be significant. Continuing health issues can lead to large gaps in learning due to multiple and extended absences. Feeling unwell and/or experiencing pain can affect concentration and learning. In addition, the child can experience social difficulties; problems ‘fitting in’, isolation from peers and the school community, and bullying.

In Australian schools, students are required to have medical plans for asthma, anaphylaxis, diabetes, epilepsy and some other conditions. The plans must be displayed in a prominent place for all staff to see. While plans and staff training are essential for managing life-threatening events, most plans are limited to immediate medical needs rather than recurring, often-changing educational, social and emotional needs.

Currently, education authorities in Australia have developed policy only for extreme cases, where children are so unwell they cannot attend school. For the remainder, there is no formalised policy or guidelines for teachers and schools about how to best support these children. [6]White, J. & Rosauer, K. (2015), ‘Young Australians, illness and education: Report on the national database project’, Victoria University, ...continue  This procedural deficit stands in stark contrast to the UK, where schools must have a policy in place for all students with a serious or chronic medical condition, and students missing more than 15 school days a year are allocated a local council advocate who liaises between student, parent, medical professionals and the school.[7] Jacks, T. (1 July 2015), ‘Unwell and uneducated: sick kids fall behind in class’, The Age. Accessed on 19 November 2015  ...continue 

School absence

Children with serious, chronic or potentially fatal medical conditions often miss many days of school when unwell at home or in hospital. Asthma, for example, is the leading cause of absenteeism in school-age children in Australia. [8] Asthma Australia, Accessed 10 October 2015, http://www.asthmaaustralia.org.au/ThreeColPB.aspx?pageid=17179869788  Some serious medical conditions may result in an extended absence. Others may involve shorter, intermittent absences, which can be just as disruptive to learning. When children are well enough to attend school, they may still miss classes to attend appointments. Attendance programs such as, ‘It’s Not Okay to be Away’ and ‘Every Day Counts’ highlight the importance of regular school attendance, but are not sensitive to, and do not adequately recognise the needs of this large cohort of students.

Impact on learning

While numerous school absences interfere with both academic and social learning, departments of education around Australia do not currently identify or monitor these students either individually or as a cohort. [9] White, J. and Rosauer, K., op. cit. Many will have extensive gaps in their knowledge and skills. Social development can also be impaired, as students miss day-to-day, activities and age-appropriate practice of social skills.

At times students will attend school when they are not fully well or are experiencing pain, fatigue, anxiety, depression or other effects of their illness. This will not always be obvious to teachers and other staff [10] Jackson, M. (2012), ‘The special educational needs of adolescents living with chronic illness: a literature review’, International Journal of ...continue and may even be kept hidden as the student tries to fit in with peers and avoid being excluded. [11] Yates, L., Bond, L., Dixon, M., Drew, S., Ferguson, P., Hay, T., Julianne Moss, Pamela St Leger, Hannah Walker, and White, J. (2010), ‘Keeping ...continue

There is a tendency for teachers to set lower expectations for these students [12]Yates, L., Bond, L., Dixon, M., Drew, S., Ferguson, P., Hay, T., Moss, J., St Leger, P., Walker, H., and White, J. (2010), ‘Keeping Connected: ...continue even when they are well, in an attempt to compensate for their illness. This can contribute to reduced academic performance. It is preferable to work sensitively with the child, and their support people to set challenging yet manageable educational and behavioural expectations. An individual learning plan (ILP), with regular meetings and reviews can maximise opportunities to meet learning needs. At all times, privacy is paramount.

Anxiety and depression

For some of these students the school environment can pose potential, and at times fatal health risks. While most children with serious conditions are at ease with their medical status, exposure to potential risks, obstacles and social difficulties at school can lead to anxiety, [13]McGrady, M. E., Cotton, S., Rosenthal, S. L., Roberts, Y. H., Britto, M. & Yi, M. S., (2010), ‘Anxiety and asthma symptoms in urban adolescents ...continue depression [14]Meijer, S. A., Sinnema, G., Bijstra, J. O., Mellenbergh, G. O., & Wolters,, W. H. G., (2000), ‘Social Functioning in Children with a Chronic ...continue and other mental health conditions. As a result, some may have higher levels of behavioural and social issues than same-age peers. [15] Hysing, M., Sivertsen, B., Stormark, M. B., Elgen, I., & Lundervold, A. J. (2008) ‘Sleep in Children with Chronic Illness, and the Relation ...continue

The worry, anxiety, and sadness that may be experienced by these children can arise from the fear and/or concern around one or more of the following issues.

  • Having an acute or fatal episode at school (e.g. epileptic fit, anaphylaxis, hypoglycaemia). Worry may stem from the child feeling their wellbeing is less supervised in the school environment.
  • Being ‘different’. These young people are often anxious about being ‘different’ from peers, privacy, and the limitations imposed by their condition. They may feel resentment, guilt or embarrassment about adjustments made to accommodate their illness. In some cases, this may result in the student not telling staff when they are unwell.
  • Social isolation, peer and friendship difficulties can arise as a result of frequent illness and absenteeism.
  • Bullying. Widespread bullying of these children has been reported.[16] ‘Bullying and Children and Youth with Disabilities and Special Health Needs’, tipsheet from Stopbullying.gov. accessed 1 December 2015 ...continue
  • Falling behind with schoolwork and not being able to catch up.
  • Punishment. Young children may believe their illness is a punishment for wrongdoing.

Parents and communication

Students with ongoing or recurring health conditions frequently face significant communication difficulties with schools. [17]White, J. & Rosauer, K. (2015), op. cit. Their parents also face these difficulties. At times communication between school, home and health professionals can be haphazard and lack formalised systems to support and review the progress of the child at school.

Parents often have to advocate on behalf of their child to ensure educational needs are met. [18]Jacks, T. (1 July 2015), Unwell and uneducated: sick kids fall behind in class. The Age. Accessed on 19 November 2015  ...continue The lack of formalised policies in many schools means a child’s teacher may not be aware, or fully aware, that the child has been unwell at home, hospitalised or requires a modified or reduced workload. This situation can occur for many reasons including:

  • the school administration failing to pass on information to all teaching staff
  • lack of communication between teachers when the student has different classes
  • lack of communication between health professionals and the school, or
  • the student not wanting to be treated differently and not informing teachers of their changing health status and classroom needs.

This is predominantly seen in secondary schools where the typical routine involves multiple teachers working with each child. The student may be penalised for not completing tasks by the due date if teaching staff are not aware they have been unwell.

Parent concerns

Many parents report concern and frustration [19]Yates, L., Bond, L., Dixon, M., Drew, S., Ferguson, P., Hay, T., Moss, J., St Leger, P., Walker, H., and White, J. (July 2010) op. cit. because their child’s needs are not met by the school and communication systems are not effective. Do not dismiss parents’ concerns and advice. They will often have specialist knowledge or observations that may assist you in formulating best teaching practice to support the child. Typically, parents are the experts on their child and their particular circumstance.

Parents and anxiety

Anxiety is common amongst parents of children with serious, chronic or potentially fatal conditions. Parents may inadvertently take their fears, frustrations and anger out on others, including school staff.

Parents of children with life-threatening medical conditions send their child to school every day knowing the child could experience a medical emergency and never come home. These parents have typically experienced their child having an ‘unmanaged’ medical crisis such as an anaphylactic reaction, a severe asthma attack, or an epileptic or diabetic fit, which may have resulted in death if there had not been successful medical intervention. Anxieties associated with their child’s illness may have been shaped by the first episode. However, all adults need to be mindful that the crisis aspect of the condition should not overshadow the everyday educational, emotional and social needs of these children. There is much stress and strain on parents and on their relationship. Some parents are understandably very protective of their child’s safety, and the many day-to-day issues and concerns, and will sometimes overlook the child’s need to develop independence. Many parents also work long hours or involve themselves in community or other fundraising to support medical research and associated activities.

Legal obligations

In Australia, schools are legislated to provide ‘reasonable adjustments’ for students with disabilities, including those with health conditions. [20] Disability Discrimination Act 1992. Australian Government. https://www.legislation.gov.au/Details/C2015C00252 Funding, educational guidelines and policies are in place to help support only those students with the most severe and deteriorating medical conditions. Contact your Education Department or Central Office to ascertain whether a child qualifies for extra funding or support, such as access to a visiting teacher service, psychologist, or other allied health professional.

Many children with chronic medical conditions do not necessarily require or meet criteria for additional resources and currently schools must develop and implement their own policies and procedures to ensure they provide reasonable adjustments to meet needs. Funding may not be the parents’ main concern. They will be concerned to have the teacher routinely show interest in and care for the child, making allowances such as adjusting homework expectations and keeping in contact when the student is absent. These children and their parents generally want ‘reasonable adjustments’ to promote inclusion and equity. For example:

  • increased communication between school, home, and health care professionals
  • considering what the child is physically capable of as their condition changes
  • insight into when the child is having a bad day or struggling with an area of work
  • flexibility to modify homework, due dates for assignments and test conditions [21] White, J. & Rosauer, K. (2015), op. cit..
  • strategies to ensure continuing connection with school, particularly when absent at home.[22] Missing School 2015 – Full report: School connection for seriously sick kids: who are they, how do we know what works, and whose job is it? ...continue

Strategies to support the child with a serious or chronic medical condition

Work closely with the child’s parents

  • Make an extra effort to ensure kind, open communication. Parents may have experienced frustration and fatigue dealing with multiple health professionals and a lack of formalised communication channels between health care providers, schools and themselves. See the section, Implement formal processes to improve communication within your school.
  • Ensure parental anxieties are listened to and medical recommendations are followed carefully. It is important that actions agreed to by school staff are recorded, implemented and regularly reviewed.
  • Create individual learning plans (ILPs) that list the child’s interests, strengths, learning styles and a strategy that facilitates effective continuing communication. In addition, list long- and short-term plans associated with learning, wellbeing and/or behaviour. Include expectations related to school absence due to treatment and/or recovery at home, and strategies to achieve the stated goals.

The ILP should include specific measurable outcomes based on standardised, objective or clear assessments or benchmarks, with regular monitoring, evaluation and review. The child will need to feel comfortable with proposed interventions so trialling may be required. At school, inclusive or private approaches may help to reduce feelings of resentment, guilt or embarrassment about any agreed adjustments.

  • Contact parents if the child is unexpectedly absent for two or more days. This lets the family know that the school cares about their child. It also helps to build the parent-teacher relationship and facilitates planning for missed work.

 

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