Letter of the Week: Mother Discusses Advocacy in Schools

“Rather than advocating for nurses, I think it might be better if parents advocate for two other changes: positions for diabetes aides and a change in DPH regulations to allow EMTs to administer glucagon. These two changes would, I believe, keep children with diabetes safer and better integrated into

Oct 27, 2008

I read with interest the article by Cynthia Heinz in which she spoke to her local school board, describing a worst case scenario for a child with severe hypoglycemia. As a veteran parent with 15 years of dealing with diabetes in our local public school, I have a few things to add to the discussion.

First, parents who want to advocate for a school nurse or other medical staff should start early in the budget discussion for the coming year. In our town, the officials then had time to go to town meetings and request money directly from the townspeople to hire a nurse. In other towns and cities, no matter what form of government they might have, early advocacy, before budget numbers are set and allocated, will help make a nurse possible. Relying on kindness and concern does not work; relying on fear of liability is key.

Second, it is very important for all parents to understand that EMTs do not have the ability to do anything for a child who is unconscious due to low blood sugar. All EMTs can do is transport. So many articles give the impression that calling 911 will bring help. EMTs can use glucose gel if the child is not totally unconscious, rubbing it on the inside of the lip and cheek, but they will NOT administer glucagon. Paramedics, on the other hand, will do IV treatment. Parents should always instruct the schools to do glucagon before or while the school calls 911. Schools should also be asked to request paramedics, if available in your area.

Although we have always had a nurse and an LPN, or aide, in our school clinic, Massachusetts law does not permit the school nurse to train lay people (teachers and other staff) to do glucagon. Therefore, we as parents have had to do that training for teachers, coaches, drama and music directors, and so on.  I don't know if other states are different or if the school nurses cited are doing this against regulations, but the law in our state certainly needs to change. Perhaps glucagon could be delivered in a form similar to Epi-pens, which most states do allow teachers and other lay staff to use.

Furthermore, nurses are not allowed to make medication decisions for our kids with diabetes. If the child's insulin needs change for reasons such as exercise, stress, or illness, the nurse has no discretion to make adjustments. Parents and the endocrinologist must provide guidelines each fall for the nurse, but these are often too rigid for a child whose diabetes is hard to manage. It is impractical for a school nurse to call the endocrinologist every time insulin adjustments need to be made, so the child's care suffers. In these days of fine tuning and "tight control," this situation needs to change.

Finally, for staff training purposes, we, the parents, found it helpful to meet with staff and teachers at the beginning of each school year rather than relying totally on the nurse. We were able to explain the medical side, as well as the emotional and developmental sides, of diabetes in a way that was geared specifically to our child, using materials from JDRF and ADA to prepare staff for our presentation. Our child attended all these meetings as well.

Getting our child through school, even with two nurses, required a lot of time and attention from us as parents. Having a nurse, or even two nurses, was far from a panacea. To be honest, we and the other family in our town who has a child with diabetes were happiest the year the school provided a "diabetes aide" whose job was exclusively the two children. Because that aide was not hindered by state Department of Public Health regulations, the aide had a little more flexibility and could take a little more responsibility for our child's care. The aide went to where our children were, whether the classroom or the playground, so their lives and education were not disrupted by trips to the nurse's office, and the other children became very matter-of-fact about diabetes as well.

Therefore, rather than advocating for nurses, I think it might be better if parents advocate for two things: positions for diabetes aides and a change in DPH regulations to allow EMTs to administer glucagon. These two changes would, I believe, keep children with diabetes safer and better integrated into "normal" life at school.

Pamela Brindamour
Rockport, MA

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Posted by Anonymous on 28 October 2008

RI just passed the glucagon bill which allows non-medical personnell to administer the shot. It took 5 years and it was parents who made it happen. You can get one of your legislators to sponser the bill. It has to start with parents.

Posted by Anonymous on 28 October 2008

I feel it is both a disservice and a mistake for Pamela Brindamour to discourage parents of students with diabetes from advocating for full-time school nurses to assist their children in school and instead to promote the use of non-medical school health aides. I am a school nurse but I say this not with the purpose of promoting my job security but in the hopes of fostering the safety of kids with diabetes in the schools. I cannot tell you how often I cringe at the thought of these minimally prepared persons out there alone in schools administering insulin without having a sufficient comprehension of the magnitude of what they are doing and the possible consequences should they do it erroneously. I am not criticising their intentions but simply recognizing that diabetes is a complicated disease that requires a delicate balance between food, medication and activity. Learning the intricacies of this interplay takes time and understanding and in my experience as a school nurse for the past 30 years the kind of time needed is never provided in the school setting and the understanding necessarily comes from knowledge gained in study and practice about how the body works in general and specifically in diabetes. I work regularly with diabetic students and their families and have always been a strong advocate for the students getting adequate assistance with their cares at school. This has meant that I have trained many teachers, aides, paraprofessionals, principals and other school staff in checking blood sugars, administering insulin, counting carbs accurately, recognizing high and low bs and giving glucagon. But as the only nurse in a school district with over 3200 students,some of them with special health care needs requiring specialized procedures, and covering six schools while also being the only medically trained professional in the school district and therefore expected to manage the overall school health program for it by doing bloodborne pathogen training and exposure incident follow-up, medication administration and immunization auditing training and oversight,training and competency reevaluation of specialized health procedures such as catheterizations, tube feedings or suctioning, writing emergency plans for teachers, kitchen staff, bus drivers, coaches and individualized health care plans for students with a wide array of illnesses like food and other life threatening allergies, sickle cell anemia, leukemia and brain tumors, seizures(some requiring training of staff to administer rectal medication in an emergency,)rare genetic defects requiring a variety of interventions, asthma and I could go on and on, writing health related policies and procedures, providing CPR/AED and first aid training to staff and volunteers, overseeing the maintenance of the AED's in the schools, caring for sick and injured students etc., etc., etc. it leaves me with little time to provide the kind of close supervision of any of these students that I know they all need. Yet, expecting the teachers, aides and other school staff with no medical background (and often no desire)to be responsible for the safe care of these students is just not reasonable. Training aides to assist these students is absolutely necessary to help or oversee the students with the tasks they must do but to rely on them to solely make critical judgements about a student's condition or immediate medical needs is not. This requires the expertise of a medically trained person to assess students' health status and intervene appropriately and quickly if needed. Nurses have this training and experience and are best prepared to do this but certainly cannot be expected to do so properly when they are spread as thin as most of us are.
Parents would not appreciate me taking over their child's math class after the teacher gave me some brief training in it because they know I am not adequately prepared (or licensed by the state education agency which verifies teachers'educational and practice preparation and their expertise and dictates what even they can teach)to guide their children in mastering the subject so they can pass college entrance exams or utilize the math in a real job setting. And I don't believe most people would want their loved one in the hospital for a serious illness like a heart attack,that requires continuous assessment of the person's status arrived at by observing a variety of parameters of the person's functioning that could indicate a worsening condition, being cared for only by a nurse's aide who has not been trained to make that kind of assessment or intervene if it becomes necessary(and who is not licensed to do so either). Why then is a school aide considered able to provide the kind of care needed by students in schools today with serious,often life threatening health concerns? Anyone can be trained to do tasks like giving injections, poking a finger to get a blood test, giving a tube feeding,etc. but without the knowledge base,background and experience to interpret the results of these tasks or pick up on any untoward affects that occur when they are performed are they really able to give safe care to these kids? Asthmatic children have died in schools because teachers did not recognize an asthma attack when a student was in the midst of it or didn't believe them when it was reported. Had they been able to look at the student and recognize the circumoral cyanosis or the chest retractions and what they indicate or listen to lung sounds with a stethescope to determine how decreased the breath sounds were, as a nurse would do, they may have been able to give the student the needed treatment or summon emergency help in enough time to save the child. Most deaths in school age children from food allergy anaphylactic reactions have occurred in schools. Had someone with more experience and understanding of the nature of allergic reactions been able to check the student for swelling or hives developing in other places than his face, or recognized that when a child says he feels a lump in his throat it indicates swelling of his airway and had used an Epipen immediately while 911 was being called, as a nurse would do, perhaps these kids would have survived. I would hate to start hearing about diabetic students who suffer harm as a result of inproper dosing of insulin or lack of recognition of signs of low blood sugar or proper treatment for it. Years ago diabetic students didn't take fast or short acting insulin at school, they were on long acting insulin that was given at home and they may have tested their urine occasionaly for sugar levels. That is no longer the case. Nowadays they come to school with detailed plans for frequent bs testing, counting carbs,calculating insulin doses and administering it, sometimes several times a day,wearing insulin pumps,and treating low blood sugars with injectable medication. Schools are in the business of teaching children not caring for their illnesses. Yet, they are ultimately legally responsible for the safety of all their students. They would be wise to utilize properly trained professionals whose business it is to know about and to care for these conditions and who can help to ensure this safety.
It is not unusual for school administrators to want and expect school nurses to sit in health rooms to see kids who get minor illnesses or injuries so secretarial staff does not have to contend with this. Yet, most people who have had or been around children are well prepared to deal with these kinds od issues. However,kids are coming to school with more serious and involved health conditions than ever before requiring persons with a broad based knowledge of health and illness to appropriately attend to their complicated needs. Do you really want a school aide or the secretary doing this or might they be better equipped to check a child's temperature if they have a stomach ache or put a band aid on a scratch they got while playing at recess. Having a full time RN in every school is the best way to meet these students' health needs and to keep them safe.

Posted by shosty on 30 October 2008

The school nurses in Massachusetts are not allowed to do a lot of the things this nurse lists. They cannot assess and adjust insulin, they cannot by law train lay staff to do glucagon. They do not have time to do the kind of individualized care required, and may not be in the office when a child has a bad low.

I researched and found a state grant for our school system, which, as a result, has two nurses and a nurse supervisor. With all this nursing staff, I was still forced to direct our child's care by phone, because of the legal restrictions on their practice. Eventually, the school paid for a cell phone for me and for the aide, and we did it together, which was a lot better than the nurse calling me every hour. A lot of nursing care for diabetes in schools appears to be against DPH regulations, including some of the tasks that you describe. Aides are also a better situation with cuts in school budgets happening all over. They should be trained and supervised, of course, by a nurse and a parent.

Regarding advocacy for glucagon: I agree that parents need to make it happen. EMT's do epi-pens because parents made it happen.

In my own area, I raised a ruckus over this by writing newspaper articles, contacting JDRF, holding networking coffees, contacting our Northeast district EMS, arranging a big meeting with EMS, local ambulances, and Selectmen, involving doctors and school nurses.

We were in a situation where the school nurse was not allowing training of lay people, but our daughter did activities after school when the nurse was not there. The school allowed me to train, to avoid liability. Town sports coaches were refusing to do glucagon, and the EMT's would not either (we have spotty paramedic coverage). Up to a certain age, I just went to all our daughter's games, field trips etc.

Nothing came of any of my advocacy efforts, because parents did not seem interested. Writing the letter to this newsletter was another effort, and I hope that parents pay attention and get the laws changed in their state.

At the time I made called meetings and wrote pieces on this topic, Wisconsin was the only state allowing EMT's to do glucagon. I am glad that RI has followed. Let's all work to get more states to allow this!

Posted by shosty on 30 October 2008

One other comment. This nurse, like many medical people, forgets that mere parents take care of children with diabetes, without nursing supervision of course! The availability of the aide was the important thing. In fact, having an aide for the two kids w/diabetes in our school, freed up the nurse to do other things, including screenings, care for kids with asthma, first-aid, assessments of fevers, disaster planning, parent meetings and so on.

Our daughter was "lost" by the school nurse in 3rd grade. A visiting nature group took the class outside, into the woods. Noone told them that she had diabetes. She was still on shots, not yet the pump, and it was snack time. I happened to call the nurse, who could not find our daughter. I called the principal, who personally carried our now very low daughter inside.

That is when they hired an aide. The nurse simply had too many demands placed on her.

The American Diabetes Association has also advocated for lay aide positions, recognizing fiscal realities and the incredible pressures on school nurses.

Posted by SafeAtSchool on 1 November 2008

This all comes down to myth vs. reality. And here's the reality:

FACT: Federal law requires provision of related healthcare services to students with medical needs, and this legal requirement supercedes any state law. Section 504 of the Rehabilitation Act and IDEA mandate all schools that recipients of federal funds to provide needed care to students who meet the eligibility criteria of the term "disability".

FACT: There is a severe shortage across the nation of nurses graduating from nursing programs, and of those that do, few are attracted to work in the school setting because of harsh working conditions and low wages. By 2011, the number of nurses leaving the profession is projected to exceed the number of nurses entering the field. The average elementary school teacher earned $13,600 more than the average school nurse. By 2012, it is projected that there will be a 20% shortfall in the number of registered nurses as compared to need based on population growth. So, even if funding became available to put a nurse into every school, there simply aren't enough skilled individuals to fill the positions. Simply put, striving for a goal of a nurse in every school is an unrealistic and unattainable goal. Delegation of diabetes care to non-licensed school personnel is a necessary and viable solution for providing appropriate care to students who require assistance/supervision.

FACT: The average age of a school nurse is 50+, and many have not received training in current standards of diabetes care since graduation from a nursing program. According to the Nat'l Association of School Nurses (NASN), fewer that 10% of all school nurse are younger than 30 years of age. The last NASN membership survey found that almost half of the nurses responding were over 50 years of age.

FACT: School nurses are frequently cited by diabetes families for their lack of familiarity with best practices of diabetes care, including but not limited to operation of insulin pumps. The advent of fast-acting insulins and technologically-based devices such as insulin pumps and continual glucose monitors does make daily daibetes care easier to manage, however school nurses need to be better trained in the usage of these treatments and devices. In a 2006 research study published in the Journal of School Nursing, "the nurses' responses indicated that they were "scared" when first caring for students with continuous subcutaneous insulin infusion therapy. The data also revealed that school nurses who were able to learn the language of continuous subcutaneous insulin infusion therapy and successfully deal with pump problems developed trusting and knowing relationships with students, teachers, and parents."

FACT: In 2003, all but one state reported a defiicit in school spending. Over the last several years, this scenario has dramatically worsened, not improved.

FACT: Diabetes medical professionals including members of the Lawrence Wilkins Pediatric Endocrine Society, the American Association of Diabetes Educators, the American Diabetes Association and leading pediatric endocrinologists throughout the country have publicly stated that the training and delegation of diabetes care to non-licensed voluntary school personnel is safe and appropriate. Diabetes patients, young and old alike, are trained in daily diabetes care with great success in attaining diabetes management medical goals.

FACT: State efforts such as the Colorado Diabetes Kids Program have already proven that training and delegation of diabetes care to non-licensed school personnel is a viable solution to meeting the needs of children with diabetes while at school, in aftercare programs, and during extracurricular programs and field trips.

Diabetes care in school requires diabetes families to speak out and advocate for their childrens' needs. Become educated about the laws, federal and state, and learn to effectively advocate on your child's behalf. Remember...YOU are your child's best advocate...and your child is counting on you!

Posted by shosty on 3 November 2008

Excellent information, thank you!

Regarding the fact that federal law (504) supercedes state law (DPH regulations): we cited this many times in our advocacy. However, the head nurse in our system flat out refused to risk her license by making decisions or doing lay training.

However, for us, when it came right down to it, we felt safer with the nurse having less responsiblity for our daughter, and the aide and parent working together instead. So, we did not fight for the federal law in this instance.

However, people should know that when they do want to assert their child's rights under Section 504, the local Federal Office of Education has a Civil Rights department which can be very helpful. Before making a full out complaint, parents can ask this office to intervene and come to the school to do training and consciousness-raising. We did this for a couple of issues that came up.

Since the advent of tight control, diabetes care at schools has changed, and it is true that many nurses are not caught up with these developments. TIght control also means more intensive management, requiring more time than most school nurses can provide.

One other point about having an aide: our child tested her blood sugar in the classroom, so that she did not miss any of her education. This point was also based on Section 504. This necessitated frequent trips by the aid or nurse to the classroom, and, therefore, an aide position was much safer and more convenient for the school as well. When the aide was not taking care of the two kids with diabetes, there was plenty for her to do elsewhere. She did not stay in the room, but visited for testing and other diabetes tasks.

Posted by Anonymous on 20 November 2008

Any suggestions for families with children in private schools, not covered under the 504 plan?

Posted by Anonymous on 18 April 2009

I think this booklet might have a lot of useful information concerning managing Diabetes In school

Helping the student with Diabetes succeed

I uncoverede it as well as several other useful pdf files during several google searches

Posted by Anonymous on 16 December 2010

the kids are never asked what thay want. i need some one to help me if get to low. no some one to flow me all day. no nece wod be awsome.

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