Progress Report

3.30.12 The Illinois State Board of Education posts a helpful primer on Section 504. The Board is also preparing a tutorial series on Section 504 for school superintendents that will be made available for free online.

3.19.12 Rep. Tom Cross and The Illinois Diabetes Legislative Caucus present the inaugural Stand Up/Stand Out Award to Horace Mann Elementary School in Oak Park.The school was selected because of how well they are implementing the Care of Students with Diabetes Act into their everyday education. “Horace Mann Elementary is a model for exactly how The Care of Students with Diabetes Act is supposed to work,” said Todd Kahn, the parent that nominated the school. “The team at Mann gets it right by balancing the duties of my daughter's designated care aides with those of trained healthcare providers. They have provided great care, a safe, supportive environment, and most importantly, they have allowed my daughter to be a kid.”

2.1.12 Working with the Illinois State Board of Education, Suzanne Elder is developing no-cost digital tools to enable the Board to fulfill its requirements under Section 504 of the Rehabilitation Act of 1973.

1.25.12 The Chicago Public Schools adopted a comprehensive care policy for students with diabetes. The district set a positive precedent for the city and the state by further defining the role of delegated care aides, developing district wide training in diabetes care, and establishing an annual stipend for delegated care aides.

12.15.11 In response to ongoing discussions with our federal partners, The U.S. Department of Education’s Office for Civil Rights (OCR) has agreed to hold free technical assistance presentations for our region in 2012. Representatives from OCR will address specific requirements of Section 504 of the Rehabilitation Act of 1973, Title II of the Americans with Disabilities Act (ADA), and the differences between Section 504/ADA Title II and the Individuals with Disabilities Education Act (IDEA) as they relate to students with diabetes.

10.8.11 Martha Halsey-Lyda, FNP- BC, CDE and Jodi Limacher, RD, CDE an Suzanne Elder, in partnership with Provena St. Jospeh's Medical Center, presented an inservice for 80 school nurses from Cook and the collar counties. The program covered diabetes care, nutrition, and The Care of Students with Act. Nurses earned continuing education credit.

9.1.11 Suzanne Elder and other advocates met with teachers, administrators, hospital leads, nurses, and families throughout the summer in preparation for the new school year. Skype video conferences were held with families and school staff in rural Illinois and California.

6.4.11 Suzanne Elder discussed the provisions and applications of The Care of Students with Diabetes Act with families and school personnel at an event hosted by COMMIT-TED at Morraine Valley Community College.

5.18.11 The U.S. Department of Justice and the U.S. Department of Education, weighing in on the class action suit before the California Supreme Court, argue that prohibiting trained non-nursing employees from giving insulin injections "creates a serious obstacle to the ability of California schools to comply with their federal obligations" to educate children with disabilities. Read the amicus brief here.

4.1.11 Suzanne Elder launches ABILITY Health to consult with schools and districts and develop rich media training programs and deliver them to school personnel throughout Illinois---for free.

4.3.11 House Minority Leader Rep. Tom Cross, along with state Reps. Jim Durkin and Mike Tryon announced the formation of the bipartisan Legislative Diabetes Caucus which aims to: (1) Seek and evaluate legislation that affects people with diabetes; (2) Promote prevention education, available treatments and public programs that assist people with diabetes; (3) Reach out to agencies that assist people with diabetes; and, (4) Engage in outreach efforts between the caucus, its supporting agencies and people with diabetes.

3.1.11 In the four year period preceding the passage of The Care of Students with Diabetes Act, Suzanne Elder helped more than 200 families negotiate compliant Section 504 plans with their children's schools. Since the legislation was enacted, the number of calls from parents asking for help has dropped by more than 50 percent.

2.1.11 The Student Health Task Force continues its work. Legislation recommended to date include repealing mandatory reporting of HIV status to school principals, amendment of the Good Samaritan Act to explicitly include teachers, non-patient specific prescription protocols for pre-dosed emergency medications such as epinephrine, amendments to the School Code to clarify applicability of Section 504 to students with chronic health conditions. The task force is expected to deliver its final recommendations later this spring.

1.1.11 In an attempt to scare its members and discourage them from serving as volunteer aides, the Illinois Federation of Teachers (IFT) has advised its members to consult an attorney before doing so. Read their message here. We value teachers and nurses and the many contributions they make to the welfare of our children and we recognize that most working people cannot afford personal attorneys.To ensure volunteers feel confident about their decision to help, we have arranged to provide this legal consultation with nationally recognized experts for free. If you are a teacher or a nurse and would like to know how the law protects you, contact me, Suzanne Elder, at Elder@UChicago.edu

12.1.10 The Senate joined the House and voted tonight to override the Governor's amendatory veto. The Care of Students with Diabetes Act is now law in the State of Illinois.

11.19.10 The Student Health Task Force identified statutes and institutional obstacles preventing appropriate health care responses in school environments. Seeking a productive, professional process, Suzanne Elder identified statutory and practice conflicts and submitted recommendations for the next legislative session; Ed Kraus provided a primer on federal law; and, Jim Radermacher encouraged the adoption of rules to guide the task force.

11.16.10 The House overrides Gov. Quinn's amendatory veto 107 to 4.

10.15.10 The Student Health Task Force (HJR46) convened. Suzanne Elder, Ed Kraus and other advocates are working together to develop comprehensive policy and implementation plans that support and safeguard all students with chronic health conditions.

10.12.10 The Illinois Parent Teacher Association (IL-PTA) asks its' 150,000+ members to contact their legislators and tell them to vote "Yes!" on The Care of Students with Diabetes Act next month during veto session.

9.10.10 Organizations that support The Care of Students with Diabetes Act sent a joint letter of support to Illinois legislators, asking them to stand with the bill's sponsors this November and vote "Yes!" Read the letter.

8.21.10 When Tabitha Hearn found her 2-year-old son, Brendan, unresponsive in the family's backyard pool, she pulled him out and attempted to revive him. Her 9-year-old son, Logan, had just completed a CPR class and knew she was doing it wrong. Logan moved his frantic Mom aside, performed CPR, and saved his baby brother's life. Brendan is proof that anyone---even children---can become capable lifesavers with just a little training.

8.20.10  Governor Quinn signs a bill to safeguard students with asthma. Oddly, he vetoed The Care of Students with Diabetes Act last month, a bill that afforded the very same protections for students with diabetes. The Governor’s office has not yet explained the disparate treatment.

7.30.10 Exercising his amendatory veto power, Governor Quinn returned the bill and requested that the effective date be changed from "immediately" to "June 2011" to give stakeholders "the opportunity to work together to craft a comprehensive solution for students with all types of chronic illness." Read the Governor's message. The Governor's amendatory veto is found to be non-compliant, which, according to the Illinois Constitution and General Assembly rules, means concurrence is no longer an option. The House and Senate must vote to override the Governor's veto or the bill will die.

7.28.10 For those who still believe it's complicated and difficult to assist a child with routine diabetes care, you need to meet a young friend in the UK who knows that all you need to do is "Twiddle" and "Count to Ten."

6.20.10 The Care Act website lends a hand to advocates in California, developing a new group of parent advocates and providing them with the information they will need for the next phase in Sacramento.

6.8.10 The California Court of Appeal rules in favor of the nurses who sued to block the settlement agreement reached between students with diabetes and the state board of education. Read Why the decision is correct.

6.1.10 The Speaker sends HB6065 to Governor Quinn for his signature.

5.3.10 On the House motion to concur, The Care of Students with Diabetes Act passes 109-02-02. The bill now goes to Governor Quinn.

4.29.10 The Care of Students with Diabetes Act passes the Senate 34-08-03. The bill now returns to the House for a concurrence vote.

4.21.10 The Care of Students with Diabetes Act passes the Senate Executive Committee 12-00-00. The bill now moves to the Senate floor.

4.5.10 Pam Robbins, the President of the Illinois Nurses Association writes an editorial in opposition to The Care of Students with Diabetes Act. To read Suzanne Elder's reply, download this PDF file.

3.29.10 Stakeholders meet with Sen. Heather Steans to review HB6065 and make minor language changes to provide greater clarity. Suzanne Elder, representatives from the Governor's office, the Illinois Department of Public Health, the Illinois State Board of Education, the Illinois Department of Human Services, the Illinois Association of School Boards, the Illinois State Medical Society, and the Illinois Nurses Association attend.

3.26.10 The Care of Students with Diabetes Act passes the House with an overwhelming majority of support, 114-001-002.

3.10.10 The Care of Students with Diabetes Act passes the House Education Committee 15-3-1.

3.2.10 The Care of Students with Diabetes Act passes the Senate Public Health Committee 10-0-0.

2.23.10 A brief spot about diabetes at school airs on CBS News Chicago.

2.15.10 Parent advocates contact legislators to build support for The Care of Students with Diabetes Act.

2.11.10 Rep. Tom Cross hand Sen. Heather Steans file The Care Act in both the House and the Senate.

1.4.10 Rep. Tom Cross hosts a meeting with Sen. Heather Steans , Sen. Don Harmon, Ed Kraus, Jim Radermacher and Suzanne Elder to review the plan for the next legislative session.

12.17.09 Sen. Steans meets with Ed Kraus, Jim Radermacher and Suzanne Elder to discuss the bill and opportunities its advancement.

12.12.09 NORMAN, OK—Ryan Fightmaster, an Oklahoma University junior, suffered a diabetic seizure after his blood sugar became dangerously low. His roommate, Lee Pelkey, injected glucagon and called for help. About his friend, Ryan said, “He really took care of me; he absolutely revived me.”

5.17.09 Rep. Tom Cross and his staff gear up for round three. With a keen interest in resolving this problem, legislators, parents, and advocate organizations have asked teachers' unions and nurse associations to move from opposition to action and provide an alternative to The Care of Students with Diabetes Act that they could support. No proposals have yet been put forth.

4.4.09 "Why I'm a Mother (and why I wish I meant that only in the literal sense)," posted by Suzanne Elder on Prairie State Blue. Read it here >

4.2.09 Senator Don Harmon passes a shell bill for The Care of Students with Diabetes Act (SB95). The bill now moves back to the House for substantive negotiations.

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 was incredulous. 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 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 HB146.

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.

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 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.

10.15.06xxSuzanne Elder spent the summer researching state and federal legislation, drafted the Care of Students with Diabetes Act, and personally delivered it to Cross' staff analyst, Laura Minzer.

6.1.06 After identifying every legislator with a record on diabetes, Suzanne Elder calls each of them. Only one returns her call, Rep. Tom Cross, who understands the issue and agrees to sponsor legislation to address it.