Ed Gibson leaves work four or more times a week to go to Cassidy Elementary School to give his son Henry, 7, insulin shots.
Gibson, a commercial real estate appraiser in Lexington, said he is more than willing to take care of his boy. But he is frustrated that Kentucky regulations and law do not allow school staff other than licensed health professionals to give Henry his insulin, even if the staff has training.
With Type 1 diabetes, Henry's body does not produce insulin, a hormone that is needed to convert sugar, starches and other food into energy, according to the American Diabetes Association website.
Fayette County Public Schools, like many other Kentucky school districts, is short on school nurses. The part-time nurse at Cassidy typically gives Henry one injection each day after lunch, his parents say. The second-grader usually ends up needing more.
Sign Up and Save
Get six months of free digital access to the Lexington Herald-Leader
"The frustrating part about it is that there is a teacher's aide at the school who raised a child with Type 1 diabetes. She's more qualified than we are to care for somebody with diabetes," Gibson said.
Also, "Henry's primary baby sitter, who has given Henry hundreds of shots, is right there (working) in the after-school program" and often works as a substitute teacher, Gibson said. But staff members who are trained or have offered to get training so they could give Henry a shot are not allowed by Kentucky law to give him an injection at school.
House Bill 98, sponsored by state Rep. Bob Damron, D-Nicholasville, would change the situation for Henry and others, his parents said. HB 98 and Senate Bill 30, introduced by Sen. Julie Denton, R-Louisville, would allow school staff who aren't licensed health care professionals — but who have been trained by a health care professional — to administer or help a student self-administer insulin. The current law allows school staff to administer glucagon, which is emergency medication for someone with diabetes who is unconscious from a severe insulin reaction.
Under the proposed legislation, the individual administering or helping students self-administer the insulin must complete a program consistent with training programs developed by the American Diabetes Association.
The decision to administer the insulin to students would be voluntary for school staff, and parents would have to sign a waiver, Damron said. HB 98, was approved Thursday in Frankfort by the House Health and Welfare Committee and could go to the state House of Representatives on Monday for a vote.
Allowing trained school staff to administer insulin "is a law in about 35 other states," Damron said last week. "It's not meant to replace a school nurse; it's meant to supplement the protection of children."
Administering insulin at school is at issue in a pending federal lawsuit in Lexington that was filed in 2009 against the Scott County Board of Education by the family of a child identified only as R.K.
R.K. initially was not permitted to attend his neighborhood school, Eastern Elementary, which lacked a full-time nurse, and was assigned to Anne Mason Elementary, another school in Scott County, which had a full-time nurse who could give him insulin, according to court documents. The lawsuit alleges that the decision to assign R.K. to the non-neighborhood school constituted discrimination.
"Not all kids with Type 1 diabetes necessarily need assistance from a licensed nurse," said Justin Gilbert, the attorney representing R.K.'s family. "Some can self-administer insulin. Others just need help from a trained lay person. We are troubled by the notion that kids with diabetes must be segregated to certain schools having a nurse."
Attorneys for the Scott County School Board did not return a message last week. But in court documents, they said the school board did not discriminate against R.K. Additionally, the documents filed on behalf of the school board said Scott County schools did not train employees who weren't nurses to monitor the student's blood sugar and administer insulin because that could violate Kentucky regulations.
The federal case "is an example of what we are trying to prevent with this bill,' said Stewart Perry, past national chairman of the American Diabetes Association and the association's current state advocacy volunteer leader.
Perry said he had heard complaints that children in Kentucky with diabetes are being home-schooled or, like R.K., transferred because trained school staff can't give them insulin.
Even in cases in which students can give themselves insulin shots, they have problems in Kentucky schools, Perry said. The American Diabetes Association has received complaints that students with diabetes are being denied the opportunity to play sports, become cheerleaders and go on field trips, he said, because licensed nurses are not available during those events. Stewart said that in 20 years of working with the American Diabetes Association on a national level, he had not heard of one situation "of anybody being injured, anybody being killed or anything happening" because a school staff member without a health care license had given insulin.
"The American Diabetes Association believes that every school should have a school nurse," said Perry. "But even if there is a school nurse, we need trained unlicensed personnel to augment that school nurse."
Fayette County Superintendent Tom Shelton said he thought the legislation was a positive move. "Anything that we are able to do toward the health needs of our students is certainly welcome news, " he said.
Fayette County can afford only part-time nurses at schools, the superintendent said. The district has an interim contract with the Lexington- Fayette County Health Department to provide school nurses that the district is funding entirely. "We are reviewing proposals for a new model program to begin next school year," Shelton said.
A fiscal note attached to HB 98 said there would be no cost to the state if the bill were enacted. The Kentucky Department of Education projected there could be a "small fiscal impact" on school districts if they paid to train school staff, the note said. Damron said the cost would be less than $1,000 for each school district, which he said was less than hiring a school nurse.
There are an estimated 2,564 students identified with diabetes in the public schools, the fiscal note said. But Perry said the numbers could be higher.
Meanwhile, Henry is learning to give himself insulin injections and to count the carbohydrates in his food, but he can't do that alone at school yet, his father and mother, Jennifer Allen Gibson, said.
"The way the blood-sugar levels fluctuate, Henry could need shots much more often than just at lunch," when he typically receives one from the school nurse, Ed Gibson said. "He could need it in the morning; he almost always needs one in the afternoon after an afternoon snack."
During the day, the school staff texts Ed Gibson about Henry's blood-sugar levels and tells Gibson what Henry is having for a snack so the father can decide whether he needs to go to school to give Henry an injection.
"The situation is OK for me because I'm relatively close to school," said Gibson. And, because he is self-employed, Gibson said, he can work evenings and weekends to make up the time he loses during the day. But Gibson said he knew other parents have a harder time leaving work at unscheduled times.
Henry's mother said she thought allowing school staff to be trained to administer insulin could bring increased and consistent care across the state.
"It's simply people that are going to be willing to help out for the good of the kids," Jennifer Gibson said.