The Care of Students with Diabetes Act in Illinois

by Leighann on February 25, 2010

Care Act

We are in midst of completing our 504 plan at school. Though the school has been receptive to the needs that I have put forth in our plan, I can’t say that we have an ideal situation.

There is one full-time nurse in our district for eleven grade schools. And I only recently found out that she also goes to one of the three middle schools at lunch time to tend to yet another diabetic child. After going to another school across town, she arrives midway through lunch to care for two diabetic children at our school and distribute medication to another, and must immediately leave to get to a middle school.

In an ideal world, our school would have a full-time nurse in residence to check BG’s before lunch, treat highs and lows, go on field trips, and be present at school parties so that my daughter can have extra insulin and be able to fully participate in class celebrations.

We make what we have work. So far.

Not every school district is receptive to parents’ requests to implement a 504 plan for their diabetic child. In Illinois, Rep. Tom Cross and Sen. Heather Steans have proposed The Care of Students with Diabetes Act.

This act would help insure that school children are safe and cared for.

The Care of Students with Diabetes Act House Bill 6065 and Senate Bill 3822:

  • Provides a clear plan for students who need assistance with care at school.
  • Allows school staff to serve as delegated care aides to assist students with diabetes.
  • Allows parents and others to provide training for delegated care aides.
  • Sets forth what a student with diabetes must be permitted to do while in school.
  • Prohibits school districts from denying access or restricting the assignment of a student with diabetes to a particular school.
  • Requires that an information sheet be provided to any school employee who transports a student for school-sponsored activities.
  • Provides protections for school employees against retaliation, civil immunity, and rights under federal law.

Please read the following information provided by Care and visit their website. You can sign on as a supporter of the bill. Please do this even if you live in another state or do not have children of your own. Everyone affected by diabetes should become a supporter.

The Care of Students with Diabetes Act

Rep. Tom Cross (R-Oswego) and Sen. Heather Steans (D-Chicago) filed joint legislation this month that will protect the health and civil rights of children with diabetes (House Bill 6065 and Senate Bill 3822). Similar legislation was also filed in California this month.

The genesis of this legislation and the leadership now championing it is a case of serendipity meets political pragmatism. After her young daughter was diagnosed with Type 1 diabetes in 2006, Suzanne Elder and her family faced another crisis: She was forced to quit her job to provide the basic care her daughter needed to stay in school.

“Diabetes is hard enough; I had to make sure that what happened to my family didn’t happen to anyone else.” A University of Chicago trained policy analyst, Elder saw the problem for what it was—a state policy failure—and went to work. “I called every state legislator with even a glancing association with diabetes.”

Only one legislator bothered to call back. Elder didn’t know it at the time but Rep. Cross, the House Minority leader, had the same personal understanding of diabetes that she did. His daughter has diabetes, too. He pledged his support.

Elder went on to build a statewide network of more than 1,400 affected families and advocates; she helped parents negotiate solutions for nearly 200 children and their schools, solicited support from other legislators and advocacy groups, and even drafted the legislation for Illinois and advocates in other states.

But it wasn’t enough. “Maybe a year into this project, I was up to my neck. I had no money for lawsuits. More families were coming forward. I couldn’t do all the work myself. Some of the problems were horrendous. We needed lawyers.”

There aren’t many firms that specialize in this area of law and those that do usually represent school districts. Besides, says Elder, “Most families just don’t have an extra $25,000 to $50,000 for a lawsuit. They’re already spending that amount to manage their child’s diabetes.” Advocacy organizations like the American Diabetes Association offer legal referrals but even their generous donors were taxed to the brink.


A consumer class action lawsuit settlement generated a $5 million cy pres award, which was given to The Illinois Institute of Technology, Chicago-Kent College of Law to fund pro bono legal representation for discrimination cases against people with diabetes.

Lead counselors for the Chicago-Kent team, Ed Kraus, Lori Andrews and Julie Berger, partnered with Elder and the American Diabetes Association in 2007 to provide children and their families the legal help they desperately needed.

Kraus explains, “The federal laws that protect students with diabetes are toothless without uniform enforcement and in Illinois the fact pattern is clear. Some children are protected; others are not.”

Misguided school policies cause real harm. There are numerous instances where children are not allowed to check their blood glucose in class. Forced to go to the school’s health office whenever they need routine care, children have fallen unconscious in hallways just trying to get the care the school allows them to have.

Teachers have mistaken insulin pumps for iPods and snatched them, ripping out the infusion sets inserted into children’s abdomens. Parents have had to confront school districts just to win back a child’s right to carry and eat a glucose tab in school. “A little training and a little sugar can go a long way,” says Kraus.

“A diagnosis of diabetes changes a child’s life forever but it does not alter or erase a child’s right to an education. Our job is to ensure that children with diabetes have the same opportunities that other children have,” says Kraus.

Kraus loves his work but is eager to see this bill pass and begin building a culture of cooperation and compliance. “Our kids belong in their classrooms, not in courtrooms.”

Political pragmatism.

Stymied and frustrated by the lack of responsiveness in the Senate, both on this issue and more generally on campaign finance reform, Elder ran for office in 2008. That’s when she and Steans met. They were rival candidates.

Steans beat Elder in the primary but that didn’t stop Elder. After a brief cooling off period, Elder called Steans and asked her to take a leadership role on the bill. “We were rivals for a short period but what we have in common is more lasting. We are both parents and we both care about good policy.”

The bill will be heard in committee before heading to the floor for a vote. Kraus and Elder are optimistic. “After years of hard work, lawmakers and schools understand this issue better than they did before. What’s more, they realize that litigation is expensive for them too and it’s a lousy substitute for positive legislation,” says Kraus.

{ 3 comments… read them below or add one }

1 Alicia March 13, 2011 at 5:48 pm

Can you tell me where you obtained your information on Elder and Tom Cross? I am attempting to right a policy paper for school on this topic and cannot find background information on this policy.
Thanks for any assistance you can provide.


2 Leighann March 13, 2011 at 6:47 pm

Click over to the Care Act website which is linked to in the post. They have more info and I think there is contact information.


3 Scott S June 16, 2011 at 8:21 am

This is really a conundrum, for the very reasons you note. Here’s something else to think about. Although the nurses unions and their political allies did not see an increase in nurse hiring as a result of their lobbying efforts, the sad reality is that their is a severe shortage of nurses in the U.S., to the point where we actually import many from places like the Philippines and elsewhere because the demand for nurses exceeds the domestic supply. That’s not to say there aren’t any U.S. nurses, only that many have chosen to work in fields where they can have regular hours, better benefits, etc. However, as the Baby Boom moves into retirement, the numbers will dwindle, and we cannot count on foreigners to pick up the slack, as opportunities in places like India and China appear better at home than in the U.S. The notion that schools should have an RN or LPN on staff is admirable, but frankly, I didn’t even have that as a kid in the 1970’s. This bill seems like it’s trying to accommodate the realities that many school districts simply do not have a nurse on staff in each school, yet ensure that students with diabetes can receive proper care.


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