Our Belief and Why Change is Needed

Children with Type 1 Diabetes (T1D) attending public schools in B.C. are restricted in their educational opportunities, developmental achievements and in the medical management required for their health and safety because their basic medical needs are not being provided for while at school.

Diabetes at School: Why Kids with T1D are Unsafe

 1.  T1D affects children of all ages and its incidence is on the rise. It is a chronic illness treated   with insulin; there currently is no cure. Children with T1D are considered by the Canadian Federal Government to be disabled, and are labeled by the BC Ministry of Education as Level II d - having a disabling chronic health condition. Yet, in school, they are not treated like other physically disabled students who are fully accommodated with aides trained to provide for their medical needs -such as administration of medication, tube feedings, bladder catheterizations, etc. Why this happens is not clear. Perhaps it is because their ailment is not physically obvious. But Type 1 Diabetes is a life-threatening illness that must be managed on a 24/7 basis. It is not being considered as seriously by the Ministry as it needs to be.

 2.  It is not uncommon in diabetic circles to find that families have to fight for the basic right to keep their children safe while at school and parents have to push to have the medical needs of their T1D students met in a sufficient manner. Some schools are understanding and supportive, while others, for varying reasons, are uncooperative. Parents of the latter face the decision: Do I withdraw my child from school because the school will not provide for my child’s medical needs while attending, or do I risk them being there knowing that severe and possibly life threatening problems may occur? This dilemma rarely happens with any other physical disability or chronic health condition. This is sometimes exacerbated when Nursing Support Services belittle concerns raised by parents or refuse further help or assistance with this issue.

3.  Studies show cognitive function, and consequently learning, are adversely affected when a child experiences hypoglycemia or hyperglycemia (low or high blood glucose).Appropriate medical treatment in school is therefore extremely important if learning is to occur. Unfortunately, because of how diabetes is regularly managed at school, Type 1 children typically struggle in the primary grades. Current care plan models do not contain adequate hyperglycemia protocols and often children are left suffering from very high blood sugar while they are at school making learning tasks much more difficult, if even possible. The long-term health consequences secondary to uncontrolled hyperglycemia are well documented and include: heart attack, stroke, kidney failure, blindness, and amputation. Young children MUST have access to insulin while at school and care plans do not presently include this.

4.  If a child has a medical condition where he or she could die while at school, schools learn protocols to keep that child safe. For severe allergies, Epi-pen training is conducted. If a child needs suctioning, the procedure is learned. Glucagon is a life-saving injection similar to an Epi-Pen and is used for a diabetic suffering from a severe hypoglycemic (low blood sugar) reaction. Although learning how to inject glucagon takes less than 5 minutes and could save a child’s life, this treatment is denied to T1D children in BC schools.

5.  Care plan models are administered by Nursing Support Services under the direction of The Ministry of Health and The Ministry of Children and Family Development. These plans are often inappropriate for younger children because these students cannot self-manage their own blood-glucose testing, treat themselves for life threatening situations or determine their own insulin needs. Current care plans place limits on Educational Assistants to only help with blood glucose testing and treating a student with a low blood sugar. They do not permit accommodations needed to help young children in diabetic crisis nor with insulin administration: the mainstay of medical management of T1D. The result of this limitation is that hyperglycemia, which results in cognitive learning deficits, class disruptions and long-term health problems, is not treated. The consequence to the young student is that it makes insulin regimes that could provide optimal glucose control and a decrease in long-term complications difficult, if not impossible, to implement at school.

6.  The Ministry of Education and Ministry of Family and Child Development have avoided the topic of insulin administration, raising concerns regarding liability and it being too difficult to train an aide to inject insulin. There are five successful independent care plans currently operating within the public school system. Aides are trained and liability is not an issue, as support staff is covered for liability under the School Protection Act. Both CUPE and Teachers support the advocacy effort.

7.  Teachers need to focus on teaching. Every time a teacher has to take the attention away from his/her job and attend to the medical needs of a child with T1D, the whole class is affected. In early school years, this attention is regularly needed several times a day, can be lengthy in duration and is not predictable. This is everyone’s problem.

8.  Children who are diagnosed with Type 1 Diabetes during the teenage years receive no support of any sort from the Ministry of Education or The Ministry of Child and Family Development. Teens and their parents are left on their own to inform the school, educate the school and ensure that their child receives the appropriate care in case of a hypoglycemic emergency. Teens do not have a chronic care IEP established for them either, so no accommodations can be made for them with regards to the effects of hyperglycemia on their educational performance and overall outcome.

The Cost to Families of T1D Kids

9.  Within the current system, children, including 5 year olds entering all-day kindergarten(implemented province wide by the Ministry of Education in 2011) must administer their own insulin or a parent must come to the school multiple times a day to perform this task. This is unacceptable: a 5-year-old child cannot read nor do calculations and therefore cannot manage insulin therapy. The assumed expectation that a family member attend to a child at school, sometimes several times a day, is unreasonable. It inconveniences the child, the family and the classroom and demands a requirement for care not seen in any other child with a disability at school.

10.  Many parents of T1D children exit the work force because they have found it incompatible with work and the necessity of attending to their diabetic child’s needs while at school. The resulting loss of income is a tremendous challenge for families who need benefits packages to best manage health care and living costs. The financial and emotional strain of this is significant.

11.  Children and their families face discrimination. Commonly, a family is told that a diabetic child cannot attend school or a school function because there isn’t a trained educational assistant available to help him/her. This is deleterious to the T1D child. Although it is understood that this decision is meant to have the child’s safety at the heart of it, T1D children have constant daily reminders that they are different. To reinforce this difference and then exclude a child from participation in a school event is shameful.

How to Help Kids With T1D Succeed

12.  Type 1 Diabetes affects every child differently and self-management skills are learned at an individual pace. Care plans, to an extent, reflect this. However, the limits imposed by these plans do not consider how a family optimally cares for its T1D child. Parents, in conjunction with their child’s diabetes specialist doctor, should be permitted to develop care plans that include having trained Education Aides administer insulin injections, physically operate insulin pumps and provide life-saving therapy. At present, this is not accepted practice. Consequently, families are forced to accept sub-optimal care for their child because it is believed that the present type of care is “easier” for school administrations to implement. Where this thinking fails is that it does not consider the child being cared for as much as the care providers offering this care.

13.  The Ministry of Education needs to support a provincial baseline level of diabetic care that allows for individual insulin regimes to be carried out by an aide. This will ensure optimal health and student learning. Present policy and the functions of the Nursing Support Services are not fully providing this. Consequently, children are left at school unsafe.

For more information, go to www.unsafeatschool.ca.