The World Health Organisation recognises Type 1 Diabetes (T1D) as a disability. Many countries have recognised T1D as a disability in common law. Legal frameworks exist to protect children and adolescents with T1D to ensure the student has an equal opportunity to participate in all aspects of school life. (ref ISPAD PS 5.1)

Parents and health teams respect the work demands of teachers. The contribution made by school personnel to appropriately assist the student with T1D at school should be acknowledged and appreciated by all. (ISPAD PS 6.11) Caring for a student with T1D is best achieved through a cooperative, supportive and respectful relationship between the three key stakeholders – parent (and student when they are capable of greater independence in self-care), school personnel and medical team. (ISPAD PS 4.1)

Schools in most countries are obliged by law to make “reasonable adjustments” to facilitate prescribed medical care to allow for students with T1D to participate in education on the same basis as their peers. (ref ISPAD PS 5.2)

“Reasonable adjustments” for a student with T1D includes insulin or glucagon administration where prescribed. In well- resourced countries it also includes (if prescribed and authorised by the parent in the Diabetes Management Plan (DMP) continuous glucose monitoring interpretation and intervention (which may include use of predictive arrows and alerts) and use of insulin pump settings. (ref ISPAD PS 5.4)

Scenarios

The following examples are based upon real life experiences though names and circumstances have been altered to ensure privacy.

Example 1 Annie age 10

Annie is a bright, enthusiastic 10-year old with Type 1 diabetes who is adept at self-management. Annie uses an insulin pump and Continuous Glucose Monitor. Her mother knows Annie is capable but knows she does not always remember to administer insulin via the pump. Annie’s Diabetes Management Plan outlines the need for supervision of insulin administration. The school has a new teacher from interstate who advised Annie’s mother that it was time for Annie to learn responsibility to look after herself, especially since Annie had lived with Type 1 for 5 years. The teacher had been told by an interstate diabetes educator that “schools are for education not medication.” In addition, the teacher had been resistant to learning about CGM because they were “not a technical person”

ISPAD 2018 Position Statement says:

The student’s detailed Management Plan signed by parent (and student where applicable) and medical team outlines the medical instructions for the individual student at school. This plan should specify what diabetes responsibilities can or cannot be undertaken by the student based on the child’s age, diabetes self-care knowledge and cognitive maturity (i.e. blood glucose checking, insulin administration, meal planning and adjustment, adjustment for exercise). (ISPAD PS 6.2)

Schools should have a clear understanding that the Diabetes Management Plan is not to be altered by a third party under any circumstances.  The Diabetes Management Plan is a medical order that is authorised and consented by the parent and medical team. (ISPAD PS 6.3)

Parents are the final arbiters of whether their child can self-manage certain aspects of T1D, including glucose monitoring and self-administration of insulin. The medical team should guide and support parents to ensure the student is not subject to inappropriately unrealistic expectations. (ISPAD PS 6.4)

 

Schools should not expect that young people with diabetes will "learn responsibility" for self-managing T1D by leaving them unsupported during school hours. Nor will the duration the student has lived with T1D determine their ability to be self-sufficient. Young students may be capable but should not be solely responsible for their management at school. (ISPAD PS 6.9)

Caring for a student with T1D is best achieved through a cooperative, supportive and respectful relationship between the three key stakeholders – parent (and student when they are capable of greater independence in self-care), school personnel and medical team. (ISPAD PS 4.1 )

A meeting between parent, treating health care team and school was arranged and the teacher completed 3 levels of the ISPAD e-learning modules. The new teacher was never previously given the opportunity to understand WHY Students with Type 1 require keeping their blood glucose in target range. The teacher was extremely enthusiastic for Annie to have the best opportunity to learn and started to understand why some students with Type 1 in the teacher’s previous school had periods of inattention and unexpectedly struggled with learning. Having a greater understanding of the fact that Annie’s future risk of complications was related to the variability and peaks in blood glucose, the teacher had a very different perspective and became an advocate for Annie maintaining in-target blood glucose levels whilst at school. In addition, reading best practice ISPAD recommendations and the legal requirements for managing children with a disability cemented the establishment of a positive supporting relationship between school, parent and health team.

Soon after, the teacher had a much better understanding about the use and benefit of CGM and felt reassured by knowing that Annie was using this technology. The teacher felt more supported and far less anxious about using this technology.

Example 2. Billy age 8

1.1 Following diagnosis with Type 1 diabetes, Billy’s parents advised the school of his condition and flagged the requirement for insulin administration via insulin pen before lunch when he was due to return to school in one week.  Billy’s treating health team prepared a Diabetes Management Plan outlining the prescribed treatment which Billy’s parents signed and delivered to the school. No other child in Billy’s school has Type 1 Diabetes. Billy was due to return to school in a few days.

ISPAD 2018 position statement says:

Billy’s school personnel should be educated about basic medical understanding of T1D (including recognition and urgency of treatment for low blood glucose) and the effect of T1D on the student and the entire family including the social, economic and emotional impact of living with T1D. (ref ISAD PS 7.8).This information can be gained by completing Level 1 of the ISPAD e-learning modules before Billy returns to school.

1.2   Billy has 5 teachers – 2 class teachers who job share, 1 art teacher, 1 music teacher and a physical education teacher. The Principal understood that each teacher has a duty of care to keep Billy free from harm that is reasonably foreseeable. Billy has a foreseeable risk of his Blood glucose moving out of the target’s set by his parents and diabetes health care team – either too high (over 10mmol/l) or too low (under 4mmol/l). The principal, who understands his/her obligation to staff to work under their scope of practice, asked the health team how Billy’s teachers, who have direct responsibility for Billy’s care, could be trained to adequately manage Blood Glucose levels out of target range.

ISPAD 2018 position statement says:

Those school personnel most responsible for the day-to-day management of the child with T1D should be also trained to

1.       recognize low blood glucose symptoms and signs,

2.        initiate treatment for high or low blood glucose levels and

3.       know and understand when and whom to call for assistance, including emergency responders, parents and medical team.

 

1.3   Billy’s parents requested those teachers complete both level 1 and 2 of these modules and the health team provided a Diabetes Management Plan comprising an individual “action” plan for blood glucose levels out of range and a more detailed plan outlining other aspects of Billy’s care at school. The treating health team offered to meet with school staff either face to face or via videoconference to establish a good working relationship and to support school staff in managing Billy at school.

 

1.4   Billy’s school did not have a school nurse. Because Billy has been prescribed insulin administration at school, the principal asked for volunteers to assist Billy administer insulin. None of his teachers wanted to inject Billy with an insulin pen. The principal understood that the school must, under Disability and Discrimination law, make reasonable adjustments to facilitate prescribed medical care. The principal sought assistance from the school authorities (in Australia this is the State Government) and employed a person who had volunteered to be trained to administer insulin and glucagon had the capacity to perform all the associated complex care tasks. The principal asked the treating health team what training would be required to support Billy.

 

1.5   Because Billy’s parents were articulate and capable, they elected to complete the training of those school staff themselves following the successful completion of the modules. Billy’s health team made themselves available (via videoconference) to check off any outstanding concerns that the school may have. All parties were comfortable with the training and that the parents had fully consented to the volunteer acting as their agent to administer insulin to their child.

ISPAD 2018 position statement says:

Those school personnel with authorisation or seeking authorisation through training and informed parental consent to administer insulin require a higher level of training on:

o   insulin administration

o   dose calculation and adjustments

o   the legal aspects of insulin administration

o   insulin delivery devices including insulin pumps

o   glucagon administration. (ISPAD PS 7.8)

Training can be completed with the assistance of the parent or medical team. The content of the training is the responsibility of the medical team and parent and may be assisted by on-line training courses. The Level 3 modules augment training of staff for insulin delivery. Training should be executed by people with the appropriate understanding of the student’s individual needs and skill set. Training must have informed parental consent to administer the prescribed medical treatment and manage complex medical care for their child. (ISPAD PS 7.3)

Billy successfully returned to school. He had his blood glucose levels monitored in class. He carried his blood glucose monitoring equipment and treatment for low Blood Glucose levels with him and joined in all activities.

ISPAD 2018 position statement says:

Caring for a student with T1D is best achieved through a cooperative, supportive and respectful relationship between the three key stakeholders – parent (and student when they are capable of greater independence in self-care), school personnel and medical team. The student with T1D should not be disadvantaged in the quality of T1D care whilst at school. It is essential that the quality of diabetes management during school hours is comparable to the student's usual diabetes management at home.

__________________________________________________________________________________

Example 3 - Charlie age 14

Charlie had been diagnosed with Type 1 about 2 months before the school camp. Charlie had been commenced on insulin pump therapy 2 weeks before the camp and had been using CGM from diagnosis. The School told Charlie he could only attend camp if his mother also attended and that he would be very restricted in activities on camp.

ISPAD 2018 position statement says:

Governments must support schools with adequate resources to ensure they can provide the reasonable adjustments required to create a safe environment and facilitate optimal medical management as prescribed. (ISPAD PS 6.10)

 

Students with T1D should be encouraged and enabled to participate in physical activity with the appropriate adjustments for safety and optimal performance as clearly outlined in the student’s Diabetes Management Plan (ISPAD PS 6.7)

A parent cannot be expected to “fill the gap” of school resources and attend to their child’s medical management during the school day. However, with a mutually supportive approach between parents and schools (and modern communication technology if available) positive outcomes for the student can be achieved. (ISPAD PS 6.5)

 

Charlie’s parent, treating health team and school met to discuss the issue. The treating health team wrote a letter of support outlining Charlie’s specific needs to assist the school in obtaining the relevant resources required for Charlie to safely and successfully attend camp. A copy of the letter was sent to the Equal Opportunity Commission to remind the Education Provider of the requirement to comply with Discrimination and Disability Law. Resources were supplied to support Charlie’s complex medical care for camp and Charlie successfully attended camp.

Example 4 - Debbie Age 14

Debbie comes from very difficult social circumstances and has emotional health issues. Debbie is managed with multiple daily insulin injections but had an overnight hypoglycaemic seizure a few months before school camp. Debbie’s mother and her treating health team advised glucagon to be available at school. The school advised they had been told they did not have to manage with glucagon because there was a health facility approximately 30 minutes’ drive from the school and an ambulance should arrive within that time if available. They had also been advised by a third party to allow Debbie’s blood glucose to sit at about 15mmol/l to avoid going low.

ISPAD 2018 position statement says:

ISPAD supports maintaining blood glucose levels as close to normal as possible during school hours to facilitate learning, concentration and participation in all aspects of school life. (ISPAD PS 6.1) The individual medical requirements and blood glucose targets are best determined by parents and the student’s medical team. (ISPAD PS 3.4)

The Individual Diabetes Management Plan (DMP) prepared by the parent /student (when capable) and the student’s medical team communicates the medical orders for the student and is the foundation for the cooperative relationship between parent, school and medical team (ISPAD PS 4.5)

Schools in most countries are obliged by law to make “reasonable adjustments” to facilitate prescribed medical care to allow for students with T1D to participate in education on the same basis as their peers. (ISPAD PS 5.2) “Reasonable adjustments” for a student with T1D includes insulin or glucagon administration where prescribed. (ISPAD PS 5.4)

Schools should have a clear understanding that the DMP is not to be altered by a third party under any circumstances without the consent and authorisation of the parent and medical team. (ISPAD PS 6.3

Third parties who may provide generic T1D education or have some knowledge of T1D but bear no responsibility for clinical outcomes must not provide medical advice on any aspects of the medical management of the child with T1D.

Outcome:

After a discussion between family, treating health team, Debbie and school staff, the school understood they cannot alter the prescribed medical treatment.  The school requested for staff to volunteer to be trained in glucagon administration. 

 

Example 5 -Ethan age 6

Ethan had been diagnosed with Type 1 Diabetes 2 years before starting school. Before school entry, Ethan’s parents and health team requested the school staff complete the ISPAD e-learning modules. The school were confused because they had been advised by the local education authority to use a different e-learning program that was not based on ISPAD standards. Ethan’s parents did not want to compromise his care at school but also wanted a cooperative relationship with the school.

ISPAD 2018 position statement says:

Each family will have access to different resources, coping skills and economic circumstances. School personnel will have varying interest and levels of expertise. Hence care of the student must be individualized. (ISPAD PS 3.4)

The individual medical requirements and blood glucose targets are best determined by parents and the student’s medical team. (ISPAD PS 3.5)

The content of the training is the responsibility of the medical team and parent and may be assisted by on-line training courses. Regardless of which on-line training course the school staff have completed, face to face (individualised) training is essential and should be executed by people with the appropriate understanding of the student’s individual needs and skill set. Training must have informed parental consent to administer the prescribed medical treatment and manage complex medical care for their child.

 

A meeting of parents, treating health care team and school clarified the position of the family and the content of the training for Ethan’s needs. The school completed all ISPAD e-learning modules with very positive responses. An excellent working relationship was therefore

Example 7 Freddie aged 7

Freddie is a 7-year old boy with Type 1 diabetes managed with Multiple Daily Injections of insulin. Freddie’s parents are familiar with the need to keep blood glucose levels in the target range of 4-8mmol/l and are aware of the international target recommendations for school which state that blood glucose levels should be kept under 10mmol/l to give Freddie the best opportunity to think, learn and participate at school. The parents have determined that if Freddie’s glucose levels are greater than 10mmol at school he should be given a correction dose of insulin. (ISPAD Clinical Practice Consensus Guidelines 2018 - Chapter 20: Management and support of children and adolescents with type 1 diabetes in school https://www.ispad.org/page/ISPADGuidelines2018

However, Freddie’s generic Diabetes Action Plan has defined a high blood glucose as being over 15mmol/l therefore stating an insulin correction bolus was not necessary until blood glucose had reached a level of 15mmol/l or more at school.

Freddie’s home blood glucose target range is 4 to 8mmol/l. His medical team have prescribed a correction dose of insulin for blood glucose level above 10mmol/l at home. Freddie’s parents would prefer that Freddie has the same blood glucose targets at school as he has at home and accordingly altered the school Diabetes Action Plan to advise that a correction dose of insulin is to be administered when blood glucose is greater than 10mmol/l. This management is consistent with international guidelines and with what the parents consider as optimal management to reduce risks of both short- and long-term outcomes.

The school were confused between the diabetes management that the parents were asking for compared with the advice given on the generic Diabetes Action Plans so sought guidance from the ISPAD Diabetes in Schools Position Statement. The ISPAD Position Statement is a world consensus document based on best practice and best evidence and has been recognised as a legally sound representation of rights and responsibilities.

ISPAD 2018 position statement says:

The student with T1D should not be disadvantaged in the quality of T1D care whilst at school. It is essential that the quality of diabetes management during school hours is comparable to the student's usual diabetes management at home. (ISPAD PS 4.2)

Intensive insulin therapy (IIT) is the recommended therapy for young people with T1D because it has been demonstrated to lead to improved health outcomes and reduced risk of short- and long-term complications. IIT comprises frequent blood glucose and/or sensor glucose monitoring, carbohydrate quantification, insulin dose calculation, insulin administration with meals, and insulin and nutrition adjustments for physical activity (ISPAD PS 1.1)

Parents are ultimately responsible for the medical decisions made on behalf of their child. Therefore, the parent’s informed consent and decisions regarding the health and well-being of their child are paramount. 8.1

The individual medical requirements and blood glucose targets are best determined by parents, together with the student’s medical team. (ISPAD PS 3.4) The parent is the only party who can provide informed consent to the prescribed medical treatment. (ISPAD PS 5.8)

Parents are obliged to act in the best interests of their child.  This includes making short- and long-term decisions regarding their child’s health. If these principles are applied to Freddie’s case, the parental decision and consent to correct blood glucose above 10mmol/l overrides any generic Action Plan issued. Doctors cannot provide consent – only parents can provide consent. If any person believes the parental consented orders to be unsafe or there is obvious significant risk to the child’s well being, there are mandatory reporting legislation to be followed. Both schools and health care professionals are obligated to make such reports if there are serious concerns. In this case however, the parental decision to adhere to best practice ISPAD guidelines is acting in the best interests of their child. Parental consented orders to correct a blood glucose over 10mmol/l therefore must be followed by the school.