FROM A PARENT'S PERSPECTIVE SHANA BETZ Diabetes in Ontario Schools

Agenda o Why I care about this issue o Why you should care about this issue

Why I care about this issue o Fairly comprehensive diabetes policy - YRDSB o Individual care plan established o JK / SK/ Gr 1 – CCAC 2x day o JK/SK – shared EA in classroom o Diabetes information in all classrooms o Collaborative partnership with school personnel

Why you should care about this issue o Barriers/challenges faced by kids with diabetes and their families within school setting: o Lack of understanding about diabetes management o Lack of flexibility in school rules to accommodate needs o Lack of direct support for BG testing and insulin admin for students not yet able to self-manage o Lack of support during extra-curricular activities / field trips (leads to children being excluded from participation) o Lack of emergency protocol o Leads to conflicts with schools/educators and places undue burden on families (e.g. parent employment)

Camryn – JK o Start FDK at age 3 o Principal suggested keeping in daycare o Mom spent first 5 weeks of school in the classroom o Shift nurse now in classroom for 4 weeks Lack of Direct Support

Lack of Flexibility Toiné – grade 4 o Not permitted to test blood sugar in the classroom even when low o Has to walk downstairs to the office by herself o Teacher will not permit ANY food in class outside of nutrition breaks

In JK, my son was low and was sent to the office at 9:30 am. He was left slumped in a chair until the CCAC nurse arrived at the school at 10:20 (early for 10:30 appt time) and checked his blood. She noted a blood sugar of 1.6 mmol/ml. Lack of Understanding

Lack of Understanding/Direct Support Mirren - grade 1 o School secretary will test blood sugar once daily at lunch. o Blood sugar often low because of the walk (before lunch) to the office o Parent is often in the school – field trips/dance-a-thon etc.

Lack of Emergency Protocol Dylan – grade 1 o Intense activity at lunch o Fell asleep during rest period after lunch – did not wake up, eyes were glazed and began to convulse o Staff called 911 and paramedics – blood sugar was 1.8 mmol/L o Dad arrived and injected glucagon before the paramedics

She refuses to test at school because the room she is expected to test in the old nurses room which is now a storage closet and she is not allowed to test in any other areas. Lack of Flexibility

Lack of Flexibility/Understanding Jacob - Grade 10 o Strong self-management skills and great control o Was told to go home because of severe low blood sugar at school and not return until he was “stable” o Battled with teachers and principal over his right to participate in field trips and extra-curricular activities

It is hard because the school will not provide any support for us. I have to come into the school to test and administer insulin. I can't work. I know there are resources within our school board but no one will let us have access to them due to funding. Undue Hardship

The school called an ambulance once as they had no choice as she was seizing on them. I got there before the ambulance and gave the glucagon myself to my daughter and she was better by the time the ambulance came. Lack of Emergency Support

Isabella – grade 1 o Diagnosed 20 mos. old o Did not go to JK out of fear o Applied to go to another school in same Board for SK/Gr 1 – EA support o Mom terrified she will get bumped out and lose the support Lack of Direct Support

We had a disastrous first meeting in which the school administration suggested our daughter might be better off at Bloorview (a rehab facility) if she needed medical assistance. Their position was that she (at 6) would have to manage her condition independently, despite a strong letter from our endocrinologist indicating that this was completely inappropriate in a child of this age. Lack of Understanding

During class my son was experiencing high sugar levels and needed to use the washroom more frequently than normal. His teacher announced to the class that my son had gone to the washroom 2 times already and this trip would be his last. She then told him that if he asked her again the class would be reminding him that he had already been enough for one day. He was so mortified and embarrassed that he told me that night that he was never going back to school. Lack of Common Sense

Pic of Cara