Delegate doesn't mean Discriminate

Dear Sarah Bell

We are parents and caregivers with children who have disabilities and rely on tube feeding.  Our children have delegated care plans so they can receive nutrition/hydration at school. While delegation is considered optional from a health authority position, school districts require the delegation by Nursing Support Services (NSS) to train unregulated care providers (school EA's).  For a parent/caregiver, delegation is no longer optional, but mandatory for our children to attend school and access the education they have a right to receive.

Many who tube feed choose to make homemade blended foods - blending various foods and liquids and administering the meal through the feeding tube. This allows a wide variety of real food nutrients to be consumed - which is recommended by Dr's and dieticians. Our children have health complexities that affect composition, volume, and frequency of meals and hydration. Our medical teams collaborate with  families to create individualized care plans that best suit each individual child.  This allows for autonomy over their meals, nutrition, and health. 

Our urgent collective concern is with NSS policies of Home Blenderized Tube Feeds requiring a detailed recipe for meals administered at school; limiting syringe hydration volumes; and prohibiting flexibility and adaptation in feeding/hydration. 

For people who blend meals, a recipe nullifies the purpose of blending (to have a wide and varied diet).  Families have been told they need to comply, or our children can't have meals/hydration at school.  This  contradicts NSS's own Delegation Information as found on their website.  In the FAQ: Establishing a delegated Care Plan for Tube Feeding Care in the School Setting, it states:

       "The goal of NSS is to ensure your child receives adequate and appropriate nutrition via a TF while in the school setting in a safe manner while maximizing your child’s level of independence, facilitating capacity building, and minimizing the number of times your learning is interrupted at school. "

(The result of) requiring a recipe and limiting hydration would, in fact, not be providing a child with adequate or appropriate nutrition and it will be interrupting children's learning. They won't be able to reasonably attend school as they would not have access to nutrition or hydration without delegation. In addition, in the Delegation Information it says:

        "For the task of tube feeding to be delegated, there cannot be any level of    

A meal/hydration schedule with no flexibility, also contradicts what is "adequate and appropriate nutrition" and causes interruptions in learning rather than minimizing it.  Food volume and tolerance isn't constant. Many factors, including but not limited to growth spurts, activity level, and environmental factors, for example, can cause fluctuations in volume requirements. No flexibility will result in inappropriate nutrition and exclusion from learning opportunities.

Section 8 of the Human Rights Code, Discrimination in accommodation, service and facility, states:

“(1) A person must not….

Parents send the same meals to school for our tube fed child as their non-tube fed sibling. We are not required to provide a list of ingredients in the non blended meal; siblings are allowed autonomy over their meals, and can have their meal time moved to accommodate learning opportunities. A barrier has been created for children who have medical needs that don’t fit your policies for delegation at school.  This is discrimination. Many of us have sent requests supported with documentation, to NSS Coordinators and Patient Quality Care offices asking for exemptions in order to receive delegation. NSS is denying accommodation. Denying any child accommodation to reasonable medical care and/or an education that they would otherwise be accessing, is discrimination. These policies are overstepping individual rights to body integrity, the right to control one's own health, and the freedom from harmful practices. 

We are aware and understand there is currently a review of NSS policies. However this review has been ongoing for a while and there are barriers that need to be addressed right away. We are collectively asking that:

(1) There be an immediate pause on enforcing the Home Blenderized recipe requirement 

(2) There be an immediate pause on enforcing syringe hydration volume limitations

(3) There be an immediate pause in "no flexibility" policy and allow consultation on how to manage natural day-to-day changes

(4) broaden the scope of practice to align with the needs of the individual and follow Dr/medical team care plans.

(5) parents/caregivers are central figures on their child's care team and should be included  to work collaboratively to create an appropriate individualized plan.

We are hopeful that with school starting again soon, you understand the urgency of this matter.  Please reconsider the enforcement of these policies and help us keep our children in school.

Thank you

Sincerely,  

Parents, Caregivers, and Supporters of Delegate doesn’t mean Discriminate