Parents of disabled BC children are protesting a new policy that bans them from being tube fed at school unless an exact amount of each food ingredient is provided.In the past, children have had delegated care plans so they can receive nutrition and hydration at school. School districts require the delegation by Nursing Support Services (NSS) to train unregulated care providers (school EA's).Many who tube feed choose to make homemade blended foods — blending various foods and liquids and administering the meal through the feeding tube.The NSS is now enforcing a policy that requires a detailed recipe for meals administered at school, limits syringe hydration volumes; and prohibits flexibility and adaptation in feeding and hydration. Exemptions were routinely given in regards to tube feeding children at school in the past, but won’t be allowed any longer.In an interview with Western Standard, Ladner, B.C. mother Michelle Tory said she has put food in a blender for her 11-year-old tube-fed son for almost ten years. She said that the new regulations are onerous and impractical.“They're saying you have to follow the plan to a T and they can't have flexibility in the plan to make those decisions that need to be made sometimes on the spot,” Tory said.Tory’s child is missing his fifth chromosome and is non-verbal. She said his hydration is supposed to be six times the top limit of what the regulations allow. She calls it "discrimination" that she can feed her able bodied child foods that without a demand for specifics, but the same food cannot be given to her other child through a tube.“I'm not asking them to give crazy supplements. I'm just asking them to feed my child food that is found at a grocery store. This isn't anything crazy,” Tory explained.Tory appealed to the Fraser Health Patient Care Quality Office, only to be told the decision rested with NSS, a program under the province of BC and the Provincial Health Services Authority.“There is a larger review going on with a lot of people, the Minister of Health, the Minister of Education, all sorts of advocacy groups, school districts. A bunch of parents were just interviewed,” Tory explained.“They're finger pointing up at, 'Well, it's the college's standards.' And the college is saying, 'Well, we don't control what people enforce,” Tory said.“I hate bureaucracy. That is what I hate the most, because it's just it takes over common sense and this is where we're at: the Ministry of Education, pointing fingers at the Ministry of Health, and everyone's pointing fingers, and no one actually wants to look at how this is affecting families and the kids.”The school year is almost here, and Tory wants the matter resolved.“No one seems to be budging on their side. And so if we don't change our kids’ diets, or make up a big diet, or do these ridiculous things, our kids can't eat at school. I'm not sending my kids to school for six hours without food or hydration,” Tory said.An online petition that has collected almost 1,500 signatures is asking Sarah Bell, Chief Operating Officer at BC Children’s Hospital, to change the policy. Tory believes the responsibility for the decision rests most squarely with Bell, who has had her position for five years.The Western Standard reached out to B.C. Children’s Hospital but did not receive a reply prior to this article’s submission.
