The promise of federal anti-discrimination law is unrealized for many students with diabetes. In Illinois, there are more than 900 separate school districts and so many conflicting claims leave parents and schools unclear on the applicability of The Rehabilitation Act of 1973 (Section 504), The Individuals with Disabilities Education Act (IDEA), The Americans with Disabilities Act of 1990 (ADA), and The ADA Amendments Act of 2008. These misunderstandings have led to a patchwork of health management policies, some of which are so misguided that the health, safety and education of children with diabetes has been jeopardized.
Misguided school policies prohibit glucose testing in class, which has led to children falling unconscious in hallways trying to get to the nurse’s office. Teachers have mistaken insulin pumps for iPods and ripped out infusion sets from children’s bodies. Parents have had to confront “Zero Tolerance” policies just to make sure their child can carry and eat the sugar tablet they need to treat hypoglycemia. Parents have been told to home school their children because children with diabetes are ineligible to attend schools that do not have school nurses. School boards have implemented “No Needles, No Blood” policies, which bar students with diabetes access to their own medical equipment. Not knowing the symptoms of high or low blood sugar, the sleepy girl has been mistaken for a lazy student and the teenage boy who slurs his words for a drug user.
The Care of Students with Diabetes Act (HB 6065) articulates a simple, voluntary and medically approved protocol that paves an additional path for school districts to comply with long-standing federal anti-discrimination law. The bill embodies the guidelines published by the U.S. Department of Health and Human Services and is endorsed by leading experts in diabetes care and leading experts in civil rights, education and disability law. The bill:
Permits a parent to submit a diabetes care plan, which will be the basis of a Section 504 plan.
Requires in-service training for all school employees in the basics of diabetes care.
Permits volunteer aides to receive training to assist students with diabetes care.
Details what a student with diabetes must be permitted to do in school.
Prohibits a school district from assigning a student with diabetes to a particular school on the basis that the school does not have a full-time nurse and from denying a student access to any school or activities on the basis that a student has diabetes.
Protects school employees against retaliation, provides civil immunity and preserves all rights under federal law.
BECAUSE...all children are entitled to an education; because no child's safety or education should be discounted or denied because of diabetes; because children with diabetes require routine care everyday to stay healthy and safe; because any willing, capable person can be trained to provide diabetes care; and because fear and misinformation prevent some school districts from complying with federal law...
Please consider writing a letter to Governor Quinn to express your support for The Care of Students with Diabetes Act (HB6065). You can email him at: Pat.Quinn@Illinois.gov or send an old-fashioned letter to: The Honorable Pat Quinn, Office of the Governor, James R. Thompson Center, 100 W. Randolph, Suite 16-100, Chicago, Illinois 60601
FOR ADDITIONAL INFORMATION: Suzanne Elder at 773-718-2822 or log on at www.TheCareAct.com
In Illinois, legislation that has passed the House and Senate will automatically become law without the Governor’s signature after 60 days have passed. We would prefer the Governor sign the bill which is why I’m asking people to write. When more individuals and families tell their stories, the Governor gains a clearer, more personal understanding of how important this legislation is to our kids, their families and even other state initiatives. Right now, he’s the Governor, the state’s chief executive but later, and with help from you and others, he may well become an advocate for all kids with diabetes Thanks for the question.
I am in California. I cried when I read this, because when I was in high school, after being type 1 for 5 years, always taking shots myself, they said that I could only have insulin if it was injected by the nurse, so I would have to go to the office. They said if I had a syringe on campus, I would be suspended. Then I told them I would keep in in my car, and they said that since it was a colosed campus for lunch, if I left campus, I would get detention each time I was caught, and eventually be suspended. If I parked on campus, I would get in trouble for having a syringe in my car. Oh yeah, and the school nurse had to take the blood sugar of a 17 year old. Gimme a break! I just kept it with me, and did what I needed to do in the bathroom. People smoked in the bathroom, so they weren’t going to tell on me for takign my insulin or checking my bg. At the same time,1989, it became policy that you could not have advil or tylenol, or asprin in your locker.
I graaduated in 1990, and things are so much worse now. It makes me so sad how much worse things got.
I don’t know - I don’t have diabetes, but I spent this past year working as a substitute RN for the schools and this care plan scares the death out of me. If you are a parent of a person with diabetes, you may be very well educated in diabetes and its management, but I can assure you, the rest of the public is not. And no matter how much education is presented to them, it won’t stick because it is personally irrelevant. But the clause about having “volunteers” give insulin really scares the pants off of me. First of all, does anyone get the “volunteer” part? it’s not about people doing it that really want to, it’s about people being covered from lawsuits under the Good Samaritan Act…so yeah…covered from lawsuits? such as giving your kid 40 units instead of 4 and then putting him on the bus?
I work in a hospital. The Big Guy for medication safety is Institute for Safe Medication Practices. They have a list of High-Alert Medications. http://www.ismp.org/tools/highalertmedications.pdf
“High-alert medications are drugs that bear a heightened risk of causing significant patient harm when they are used in error. Although mistakes may or may not be more common with these drugs, the consequences of an error are clearly more devastating to patients.” INSULIN is on that list, folks, right along with potassium chloride (which can stop your heart), opium (need I say more), and some nitros, (which can drop your blood pressure through the floor).
In the hospital, we are not even allowed to give insulin without having another RN check the dose alongside us.
What you are introducing with this bill (hopefully Quinn will veto the part about the injections), is some school secretary being pressured into giving insulin as a “volunteer.” They will tell her, “it’s no big deal,” and it IS a big deal. They’ll take the school nurse out of the school because they’ll just let the asthmatics get their inhalers from the same secretaries and the Epi-pen kids can take their own meds anyway and the kids with ADHD will just have to take the long acting and for the seizures, they’ll just dial 911.
I had a student with diabetes (middle school) end up having a seizure…NO ONE in that school could handle it. And this is the weird thing, he was just in my office (pre lunch), had a BS of 80 (goal 70-120), wrote down his pump bolus, and went to lunch. There while in the middle of eating lunch (he already had his oreo cookies), he had a seizure including ending up with a goose egg on his head. Now, no one in that school could handle the seizure (you know how scary they appear), but furthermore, no one in that school could assess that situation. I, as the school RN, was the ONLY one thinking - why would he seize from hypoglycemia if he was not hypo in the office and furthermore, had food (carbs) on board already? I know he had a pump bolus but still, it takes 10-15 minutes before Humalog starts to work? What else could he be having a seizure from as well, because you know, just because he’s a diabetic doesn’t mean he couldn’t choke on food, or fall first and incur the head injury and get a seizure from that, or simply be developing epilepsy? Do you really think a secretary can put a glucagon pen together under those cirucumstances, much less reason through the differing factors? At any rate, I didn’t jam in the glucagon - first I checked his BS which incidentally was at 90…I knew he wasn’t hypoglycemic and even if he was, he already had carbs in his stomach so he couldn’t be for very much longer! You are crazy if you want these untrained people taking care of your kids. You may know diabetes inside and out, but I promise you, they won’t. They won’t get it, and kids are going to get hurt.
This is terrific news…They are suppose to be trying to pass a similiar act here in CA. Not on the status of it since I am Type 2. but this gives me a good reason to find out…
RNJo: The evidence regarding the use of trained volunteers is proven safe and effective in every other state that allows it but the small group of opponents that remain won’t tell you that. They steadfastly refuse to engage the facts, evaluate the evidence or even read the bill!
The volunteer aspect is not a ruse. The bill includes specific protections for volunteers that go beyond Good Samaritan liability coverage. Read the bill. It couldn’t be clearer.
You’re right about insulin being a high alert medication but so is sterile water. That’s why it is important to contextualize use, error and be accurate about relative risks. Earlier this year, a nurse injected an entire school staff—not with the flu vaccine as expected—but insulin. Guess what? Everybody was fine. But it underscores the need for more education for everyone, including school nurses.
There is no reason to believe this bill will jeopardize nurse jobs. In the many other states that already permit trained volunteers to serve as care aides, nursing hires have gone up. Why? Once schools understand that accommodating students with diabetes is not optional—that federal law requires it—those districts that can hire a nurse do.
There’s a lot of misinformation being spread about this bill. Some say it’s requiring all teachers to assess and treat. Not true. Some say the administration of insulin requires the expertise of a nurse. Not true. Children as young as seven can dose and administer insulin accurately and safely. The diabetes care technology today is easy to learn. Teenage babysitters learn how to do this. Surely, willing and capable adults can do it, too.
No one is advocating for untrained people to take care of students. You really must read the bill. It clearly requires basic in-service education for all staff (including nurses) and more intensive hands-on training for volunteers and nurses if they need a refresher. Look, kids are getting hurt now and it’s not because they don’t have nurses. It’s because their schools and some nurses have hatched goofy policies that prevent good care.
I’ve read the bill. I’m just telling you what it will translate into, in the school system. Why do you think in the hospital, “trained care aides” can’t give insulin? Because this bill goes against other legislation already in place that states medication needs to be given by people who can not only GIVE the medication but also assess its need, the contraindications, and the effects of the medication once given. I’m telling you, the secretaries or “volunteers” will not be able to do that correctly or well. I only say that after having spent an entire day following a five year old diabetic with hourly accucheks, calls to mom, assessment of the patient himself and dosing him through his pump. Our high school and middle school children that are independent with a care plan from the MD that clearly indicates they are independent with care, all they do is run down to the Health office, do their sticks and readings, and boluses, and then log it all.
Sorry to hear what school districts you were dealing with, but in our school districts, the parents of kids with diabetes are horrified by this bill. Yes, it has positive points but I’m telling you, cost cutting will gut the good parts of this bill…mark my words.
There’s no evidence in any other state that your predictions will come true but for the sake of argument, let’s assume some staff member is forced into service. That’s where teachers’ unions come in. It’s their job to protect the rights of their members. This bill protects the rights of students.
The other legislation you are referring to is The Nurse Practice Act. It was amended in 2007 without the benefit of a patient or chronic care perspective. In fact, thanks to shady business that Gov. Blagojevich allowed on this bill, the Illinois NPA is now one of the most archaic in the nation. Carve outs, or exceptions, have already been made for day care and prisons and many more are coming.
What you’re not accounting for in your analysis, RNJo, is that volunteers ARE already doing this successfully now and none of the dire outcomes you predict have materialized. There are many schools that defy the NPA deliberately because it is the right thing to do for the students. I’d like to make sure that the nurses and staff that are doing that have the protections of this bill.
Thanks for the question.