While many parents across Canada are eager for school to start up again, the start of a new academic year brings unique challenges for parents of children with chronic conditions. From managing accommodations to coordinating healthcare plans, these families often find themselves navigating a complex landscape. Patient advocacy groups are uniquely positioned to provide essential support to families during this time. In this article, we discuss the importance of prioritizing support for families during the school year along with concrete ways patient advocacy groups can do so.
Why Support During the School Year is Crucial
Parents of children with chronic conditions face immense challenges, from managing medical care to navigating the emotional toll of caregiving, all while ensuring their child’s educational needs are met. Patient advocacy groups can significantly ease this burden by offering essential support with accommodations and healthcare coordination, and by providing education to school staff about chronic conditions like diabetes and epilepsy. Additionally, these groups help foster a sense of community, reducing isolation by connecting families with others facing similar struggles.
How Patient Advocacy Groups Can Offer Support
Providing Legal and Educational Guidance to Parents
One of the most impactful ways advocacy groups can assist is by helping families understand their legal rights under provincial and federal laws. Some families may be unaware of the accommodations their child is entitled to, such as the right to an Individual Education Plan (IEP) or modifications under Section 15 of the Canadian Charter of Rights and Freedoms.
Patient advocacy groups can create resources like guides, toolkits, and webinars to help parents navigate these legal processes. By providing templates for letters, sample accommodation plans, and checklists for school meetings, advocacy organizations empower parents to effectively advocate for their child’s needs. Asthma Canada, for example, provides offers step-by-step guidelines for managing a child’s asthma during the school year, particularly during the first month when there is often a peak in asthma symptoms due to exposure of new triggers and allergens in school.
Facilitating Health Care Plan Development
Another critical area of support lies in the coordination of healthcare needs with school schedules. Advocacy groups can assist families in creating individualized healthcare plans, which outline the child’s medical needs during school hours, medication protocols, and emergency procedures. These groups can provide templates and guidance for working with healthcare providers to ensure that schools understand and respect the child’s health requirements.
Groups like Cystic Fibrosis Canada and Diabetes Canada have created resources specifically for this purpose, helping families work with schools to ensure children have access to medication and proper care throughout the day. This type of support is especially crucial as it allows parents to feel reassured that their child’s health will be monitored and managed properly during the school day.
Training and Education
Advocacy groups can provide training and educational resources for teachers, administrators, and other school personnel to raise awareness about specific chronic conditions and ensure that schools are well-equipped to support students with chronic conditions. For instance, the Canadian Paediatric Society, based on material found on Diabetes@School’s website, developed an online course for educators to support students with type 1 diabetes. Similarly, Epilepsy Southwestern Ontario, offers an online training program for teachers that touches on how to identify different kinds of seizures and provide first aid, as well as the cognitive, psychological, and social consequences of epilepsy.
Furthermore, advocacy groups can offer resources to help school staff facilitate conversations about disabilities, accessibility, and inclusion with other students. The Rick Hansen Foundation, for example, provides free lesson plans and activities for teachers of all grades, along with an ambassador program where individuals with physical disabilities share their experiences with students.
Building Peer Support Networks
Patient advocacy groups are also in a unique position to build peer support networks for both parents and children. Whether through online forums, local support groups, or peer-mentorship programs, these networks provide an opportunity for families to connect with others facing similar challenges. This type of emotional support is invaluable, as it helps both parents and children navigate the emotional and psychological effects of chronic conditions, particularly during times of transition like the beginning of a new school year. For example, Asthma Canada offers the Asthma Pals program, which connects children with asthma between the ages of 7-11, offering them a supportive place to voice their concerns and ask mentors questions.
Conclusion
Patient advocacy groups have a vital role to play in supporting families of children with chronic conditions, particularly during back-to-school and throughout the academic year. By providing legal guidance, facilitating healthcare plans, and fostering supportive communities, these groups help ensure that children with chronic conditions can succeed academically while managing their health. As the school year begins, the work of these advocacy organizations is more important than ever, providing families with the tools and resources they need to navigate their child’s education and health with confidence.
