The Care of Students with Diabetes Act in Illinois: Progress Report

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The Care of Students with Diabetes Act in Illinois: Progress Report

Children throughout the State of Illinois need your help.
Tell your state legislators that students with diabetes deserve access to the same educational opportunities as other kids and they shouldn't have to jeopardize their health to get it.

Progress Report

12.10.08 Senator Don Harmon commits to refile The Care of Students with Diabetes Act in the 96th General Assembly.

12.08.08 "Parents fight for diabetic kids' rights" Chicago Tribune reporter, Carolyn Starks, makes front page news with the story of families dealing with diabetes and the school policies that make it hard for students to test blood sugar and inject insulin.

10.15.08 Suzanne Elder and Ed Kraus meet with The American Diabetes Association and ADA advocates Francine Haddad, Jim Radermacher, Anne Daley CDE, and Rosemary Jaffe to review the bill with key stakeholders and advocates. Senior House staffer Colleen Atterbury for Representative Tom Cross, former and current JDRF Government Relations chairs Brian Annulis and Gretchen Livingston, Children's Memorial Hospital psychologist Dr. Jill Weissberg Benchell, Illinois State Medical Society's Alison Burnett and lobbyist Zale Glauberman also attend.

9.25.08 Suzanne Elder meets with newly minted State Senator Heather Steans to review status of legislation and the implications for all children and families in Illinois---not just children with diabetes. The new State Senator is incredulous. So are we, Heather, so are we.

8.14.08 The first ever UK study to seek the opinions of young people with type 1 diabetes, regarding managing their diabetes care at school, uncovered a number of significant misconceptions about the condition. Young people with type 1 diabetes: the influence of the school environment on self-care, shows that managing diabetes at school can be challenging anywhere. Read more >>>

5.30.08 The regular legislative session ends, marking the sixth year that the Senate has failed to take ANY action to protect the rights and safety of students with diabetes.

4.30.08 Suzanne Elder, called to attend to family matters, asks the team at Chicago-Kent to serve in her stead as legislative liaison. Suzanne continues to negotiate on behalf of students with diabetes and their families and counsel school staff. Legislative and legal matters are to be directed to Ed Kraus at: Ekraus@kentlaw.edu

4.10.08 Senator Gary Forby, (D-59) signs on as co-sponsor of HB146.

2.28.08 Senator Heather Steans (D-7) signs on as co-sponsor of HB1146.

2.22.08 Suzanne Elder, working with legislative leaders, clears impasse with opposing interest groups. House and Senate leaders now focused on renewed effort to secure passage of HB146 and amend the Nurse Practice Act to correct conflicts with Title II of the Americans with Disabilities Act. Read Chicago Journal Editorial >>>

12.07.07 Connecticut parents advocate for more school nurses and are told that juvenile diabetes does not require increased nursing coverage. Stamford Mayor Malloy said, "It's incumbent upon us and, we're more than willing, to train principals, teachers and other personnel on how, in this case, insulin would be administered." Read the whole story >>>

11.01.07 A consumer class action lawsuit settlement reached earlier this year resulted in a $5 million cy pres award that has been designated for diabetes research and legal advocacy in Illinois. A significant portion of this award is being used to provide pro bono legal representation for individuals and groups where discrimination or lack of access to care or accommodations is alleged.

If your child is currently NOT receiving the help they need to attend school safely, if you are forced to be the sole provider of diabetes care in school, if your child has been hurt or harrassed, email Suzanne@TheCareAct.com

Provide your name, phone number and the best time to call. Include a brief description of your child's current circumstance at school.

I will provide you with the contact information for the legal team that is coordinating this action in Illinois. When you call them, they will ask you about your child's situation at school and explain what will be required of you and your family should you choose to serve as a plaintiff. Our lawyers are working "pro bono publico," or for the good of the public, which means you will incur no financial costs.

10.17.07 The settled class action brought brief relief. Days after the agreement was announced, the Nursing Associations filed a counter complaint >>> against the State Board of Education. Read the Defendent's response >>> and the Memo filed by the ADA >>> here. It is a cautionary tale at best and at worst, and most sadly, a predictor of what's to come for children in Illinois.

9.28.07 Advocates met with Senators over the brief summer break. Parents demonstrated blood glucose tests, insulin injections and pumps and explained how to treat hypoglycemia.

8.08.07 Unprecedented settlement of class action suit regarding diabetes care in school announced today. Filed in 2005 by the Disability Rights Education & Defense Fund (DREDF) and the law firm of Reed Smith LLP, this settlement agreement ensures that students with diabetes in California will be safe at school and have the same educational opportunities as their peers. The case serves as both a beacon and a warning for Illinois. READ THE FINAL ADVISORY >>>

8.07.07xxSenator Jacqueline Collins signs on as a chief co-sponsor.

7.05.07xxThe Care Act Campaign launches. A series of four cards pointedly illustrate the rational for this bill. The cards are designed to keep senators focused on this issue even as the budget debacle continues. LOOK >>>

7.01.07xxThe legislature remains deadlocked on the state's budget. Other issues of governance languish as the stalemate continues.

6.06.07xxSenator Maggie Crotty signs on as a chief co-sponsor.

5.31.07xx Illinois lawmakers failed to pass a state budget before midnight. Having failed to meet deadline, legislators must now work overtime and develop a coalition of 3/5 of all members to pass the state budget.

5.21.07xxThe United States Supreme Court 05-983 >>> held that parents have enforceable rights under IDEA. Before this ruling, parents could not challenge errant school district decisions in federal court without a lawyer because districts often prevailed by arguing that IDEA did not extend to parents any rights independent of those of their children. By forcing parents to engage counsel, the cost of challenging education policies was so high that very few parents could proceed---a twisted result given that the families most in need of challenging wrongheaded policies are those already burdened by disabilities such as autism and diabetes. Oral arguments HERE >>>

5.04.07xxCare Act Becomes Law in Indiana. Indiana became one of more than a dozen other states to protect students with diabetes. The Act, signed into law today by Governor Daniels, ensures schools comply with federal law and are responsive to the needs of students with diabetes.

5.04.07xxWork begins to move HB146 forward in the Senate. Jill Weissberg- Benchell, Ph.D. Psychologist and CDE at Children's Memorial Hospital, reviews key concerns with chief-sponsor, Sen. Don Harmon.

5.03.07xxThe Care of Students with Diabetes Act (HB146) passes in the House of Representatives 91 to 21. Upon arrival in the Senate, the bill is received by its Chief co-sponsor, Sen. Don Harmon and immediately garners two strong co-chiefs sponsors, Sen. Debbie Halvorson and Sen. Dale Risinger.

5.02.07xxIn a desperate attempt to sway House votes, annonymous flyers are distributed throughout the Statehouse that say a vote for HB146 equals killing a child. The flyer is so egregious that other lobbyists inform legislators who its annonymous authors and distributors are.

4.26.07xxThe Catholic Conference of Illinois reports that recent amendments to HB146 satisfy key concerns.

4.20.07xxEducation Committee member, Rep. Roger Eddy brought his experience as a school teacher, principal and now a superintendent forward to refine and strengthen key provisions of HB146.

4.10.07xxNBC Nightly News with Brian Williams report the results of a ground breaking trial led by Dr. Richard K. Burt of Northwestern University's Feinberg School of Medicine. Suzanne Elder's daughter, along with students and staff at North Park Elementary School, contributed to the story.

4.06.07xxAll Saints Catholic Academy in Naperville announced their support of HB146 and their continuing care of students with diabetes.

3.23.07xxThe Catholic Conference of Illinois agrees to review its position and although their position may not change, it is heartening to know that the CCI is willing to analyze new information.

3.21.07xxIt was indeed the first day of spring. Rep. Cross summarized the bill for the Committee and testimony was heard from: Dr. Rodney Lorenz, Regional Dean of the University of Illinois School of Medicine and co-author of Helping the Student With Diabetes Succeed; Heather Boore, CDE and manager of the diabetes center at OSF Children's Hospital in Peoria; Dr. Jill Weissberg Benchell, clinical psychologist and certified diabetes educator from Children's Memorial Hospital in Chicago; Miss Sarah Marshall, a high school student from Springfield, described how diabetes education helps kids at school and saved an adult's life outside of school; Miss Cecilia Boore, an elementary school student from Washington, appealed to the Committee members' sense of fairness; and Laura Tucker, a mother from Mahomet, spoke poignantly of her struggle to get appropriate help for her son. The Committee voted to pass HB146 [16 Pass, 5 Present, 0 No].

3.06.07xxPhysicians and nurses at ENH Pediatrics in Evanston, Illinois, sign a letter of support for the care of students with diabetes at school.

3.04.07xxThe Chicago Tribune Magazine devoted this issue to family health. Feature article "Girl, Interrupted" described life with diabetes and how managing diabetes at school can be a challenge.

3.01.07xxRep. Tom Cross, parent advocate and JDRF government relations chair Gretchen Livingston, and Rev. Jennifer Kottler from Protestants for the Common Good enjoyed the fruits of more than four years of labor when HB138, The Stem Cell Research Act passed in the House. Rep. Cross and staff report they are excited about building a similar victory for HB146.

FebruaryxxThroughout the month, statements and proposals from opposition interests were collected. Efforts were made to develop a compromise bill.

2.23.07xxSuzanne Elder, Nancy Rotering, J.D., and Candace Fleischmann, LCSW, presented "When Food Can Be Frightening: Issues Arising from Students with Diabetes and Severe Food Allergies," a continuing education program at the Illinois Bar Association in Chicago.

2.22.07xxThe Endocrinology Department at Children's Memorial Hospital in Chicago, led by Jill Weissberg-Benchell, Ph.D. Associate Professor at Northwestern University's Feinberg School of Medicine, announce their unanimous support for HB146.

2.21.07xxBlood glucose tests were offered to legislators and staff members in the Illinois State Capital's rotunda. Kellie Holmin, from Abbott Laboratories, and Anne Daly, a Certified Diabetes Educator from the Springfield Diabetes and Endocrine Center, provided legislators information about HB146 along with this key health screening.

2.12.07xxThe Catholic Conference of Illinois releases a memo opposing HB146. Download the Conference's memo HERE >>>

1.29.07xxRep. Tom Cross, staff analyst Laura Minzer, and Suzanne Elder met with representatives from the Illinois State Medical Society, the Illinois Federation of Teachers, the Illinois School Management Alliance, The Association of Certified Diabetes Educators, The Illinois Chapter of the Academy of Pediatrics, the Illinois Nurses Assocation and others. Concerns regarding unlicensed care aides, liability, and specific language elements of the bill were raised.

1.23.07xxSuzanne Elder met with representatives of Illinois Association of School Nurses.

12.15.06xxThe bill was pre-filled for the 95th General Assembly by House Republican leader, Rep. Tom Cross.