The challenges of supporting a child or teen with a chronic illness are daunting. The fear, the exhaustion, the work to get a diagnosis and then to attend appointments takes a physical and psychological toll. What often gets forgotten is the additional stress of figuring out how a child can stay connected to schooling and not fall behind in a way that puts up roadblocks to future success.
Navigating the school system to get accommodations and support either in school or while in hospital is a challenge many families and caregivers face. There are concrete ways a school can help children and families cope and stay connected to learning while treatment is ongoing, but few families know that it is possible or how it can be done. Families may struggle to stay connected to the school, to adequately explain the challenge, and to find an educator in the building who will take the lead on making learning possible during the illness.
The Ontario Human Rights Code states that school boards have a duty to accommodate those who are facing mental or physical disabilities. This includes illness that prevents a student from attending school or causes the student to attend only part-time. Accommodations can take the form of reduced workload, access to learning online, support from the teacher or special education staff at school to ensure the student keeps up with the in-class learning, additional time to complete work while at school, and facilitating peer tutoring if the child and peers are old enough.
It is common to hear from schools that resources are scarce and that some of these options are not available. The best way to work with the school to build an education support plan for the child or teen is to request a meeting with the teacher and principal to discuss the situation. It is wise to invite another adult to the meeting as an “ally”–someone who is not a parent/caregiver but is concerned for the child’s wellbeing and is less emotionally involved. This person can function as a supportive pair of eyes and ears and take notes and keep track of “to do” items. If the child or teen is old enough and feels comfortable, they should attend the meeting to offer their perspective.
Prior to the meeting, it is helpful to share with the school any documentation that is available about the child’s illness. This should be done with the child’s permission if she or he is old enough to understand, and it should not contain information that any family member feels uncomfortable sharing. The school is bound to keep what is shared confidential and that can be confirmed prior to sending the documents.
Everyone should be clear at the outset that the purpose of the meeting is to create a collaborative plan to support the child while he or she is facing the challenge of a chronic illness. It is important to work with the following principles:
1) Collaboration is the key to effective support.
2) The Ministry of Education provides funding to support students with disabilities including chronic illness. It is the right of the child to be educated according to the Ministry and the Human Rights Commission.
3) If resources seem scarce, and the school does not feel they can provide effective support, the superintendent of the school should be contacted and involved in the discussion. School superintendents are responsible for helping schools carry out their mandate of educating all students and can access special resources.
4) There are others who can help bring the plan together including the superintendent of special education and the local school board trustee.
5) Finally, it is important that the family does not take on the responsibility of designing or implementing the support plan. Whenever it feels like things are stuck or the family is expected to make learning happen, the question to educators is, “What will you do to ensure my child continues to learn and maintain her/his place with peers?”. The education system is responsible for ensuring learning.
Children and youth who are struggling with illness deserve supports that ensure equity–the ability to maintain their learning and their place in society with their peers. Families and educators can make this happen!
Cathy Dandy
Cathy Dandy runs a consulting business that helps families navigate and advocate for their children in the public education system. Her experience working with families comes from 15+ years as an education activist, two terms as a trustee in the Toronto school system, a previous career as Director of Family and Youth Engagement at Kinark Child and Family Services, a master’s degree education at OISE, and raising three lively children. All three have emerged from the public system and are happily making their way in the world!
www.cathydandy.ca
