Diabetes mellitus, commonly known as diabetes, is a disease from which over twenty-three million Americans suffer.2 While diabetes can cause a number of serious medical complications, one of the most significant problems for Americans with diabetes has been garnering recognition of their disabled status.3 The sharpest instance of this concern is the situation faced by many schoolchildren with diabetes being allowed to fully participate in their education (and education-related activities) in an environment that fails to recognize the serious nature of their disease and fails to support their self-management of the disease.4 The problems caused by a lack of such recognition and support vary from inconvenience to serious risk of harm or death. Illinois, being a state that has taken no formal action to protect schoolchildren with diabetes, has borne witness to a number of incidents wherein schoolchildren with diabetes have been put in danger.5 Such occurrences range from students having their testing supplies locked away, to teachers not being allowed to help students for fear of spilled blood.6 At its core, the school problem is a lack of consistency among primary and secondary educational institutions in forming a basic care plan for students with diabetes and allowing those same students, if they are capable of doing so, to self-manage their condition.7
A. Diabetes Mellitus
Diabetes, medically known as diabetes mellitus, is the general name given to a number of related disorders wherein a person’s body has either a reduced ability or an inability to regulate its own blood glucose levels.8 There are two common types of diabetes: type 1, also known as juvenile diabetes and insulin-dependent diabetes, and type 2, also known as adult-onset diabetes and non-insulin-dependent diabetes.9 Type 2 diabetes is characterized by the body’s inability to use insulin10 to move glucose11 from the bloodstream into the body’s individual cells.12 Type 1 diabetes is symptomatically similar, but the root of the condition differs; people with type 1 diabetes are completely unable to produce insulin naturally.13 All people with diabetes, whether type 1 or type 2, benefit from intensive monitoring of their blood glucose levels, a skill that is generally taught upon diagnosis, even to children as young as seven.14
There is no practical or definitive cure for either type of diabetes.15 The long and short term complications of diabetes can be well-managed with proper care, most notably intensive glucose monitoring.16
B. Legislation in Illinois
There is very little Illinois legislation that directly deals with diabetes. There are only two semi-significant pieces of legislation that do so: the Illinois State Diabetes Commission Act17 and the Diabetes Initiative Act.18 The Illinois State Diabetes Commission Act, as the name implies, established the Illinois State Diabetes Commission (ISDC), an organization within the Illinois Department of Human Services.19 The function of the ISDC is essentially to gather information and develop a plan "for the prevention, treatment, and control of diabetes."20 The Diabetes Initiative Act dovetails with the Illinois State Diabetes Commission Act, directing collaboration between the Illinois Department of Human Services and the ISDC to "develop a strategic plan to slow the rate of diabetes as a result of obesity and other environmental factors by the year 2010."21
As admirable as these statutes are, neither of them addresses the school problem. The only potential reference to the problem of diabetes management in schools (or discrimination matters at all), is a passing mention, under the duties of the ISDC, to "examine the needs of adults, children, racial and ethnic minorities, and medically underserved populations who have diabetes."22 While this might seem promising, the ISDC has done little other than public awareness and prevention work.23
III. Potential Solutions
A. The Illinois Human Rights Act
The first area to examine for a potential solution to the school problem is established Illinois law, namely the Illinois Human Rights Act.24 Initially, the IHRA seems to be a good place to turn; it gives a broad definition of disability25 and covers all "non-sectarian" educational institutions.26 At its core, the IHRA makes it a civil rights violation to deny "full and equal enjoyment" of "any places of public accommodation."27 The concern, however, is that it allows an exception for schools, stating that the Illinois Human Rights Commission,28 the entity tasked with the enforcement of the IHRA "shall not have jurisdiction over charges involving curriculum content, course content, or course offerings, conduct of the class by the teacher or instructor, or any activity within the classroom or connected with a class activity such as physical education."29 The broadness of "any activity within the classroom" is the most troubling; such a wide allowance gives teachers (and schools) extensive discretion in how they can restrict children, even disabled children, in their classroom.30 Therefore, instead of trying to derive a solution out of the IHRA, drafting new and specific state legislation seems to be a more viable solution.31
B. State legislation: Is HB 0146 The Best Shot?
Another potential solution to the school problem is proactive legislation that directly addresses the problems encountered by schoolchildren with diabetes and their families.32 While the Illinois Human Rights Act addresses physical disabilities generally, a number of other states have enacted legislation that deals specifically with the concerns of schoolchildren with diabetes.33 Over twenty states have passed legislation affording greater protection to schoolchildren with diabetes,34 ranging from allowing school personnel to receive training in emergency glucagon administration for hypoglycemic students35 to comprehensive mandates obliging school districts to adopt policies allowing for students to self-manage their diabetes.36 It is in this basic framework that some Illinois legislators have attempted to provide protection for Illinois schoolchildren with diabetes.37
On January 19th, 2007, Representative Tom Cross introduced House Bill 0146 to the Illinois General Assembly.38 Known as the Care of Students with Diabetes Act,39 the bill was immediately engrossed and subsequently passed by the Illinois House as of May 3rd, 2007.40 Since that time, however, the Care Act has stalled in the Illinois Senate, having been referred to the Senate Rules committee.41 As of December, 2008, State Senator Dan Harmon has committed to refiling the Act in the 96th General Assembly.42
The Care Act, after giving a basic explanation of diabetes and the need for consistent self-management, is explicit in its recognition of the school problem, stating that:
Despite the rights and protections afforded by the Rehabilitation Act of 1973, the Individuals with Disabilities Education Improvement Act of 2004, and the Americans with Disabilities Act of 1990, children with diabetes still face discrimination in school and elsewhere. The rights and protections afforded by these federal laws are not implemented or enforced consistently in schools and school districts throughout Illinois.43
This immediate acknowledge-ment of the underlying concern of schoolchildren with diabetes shows that the drafters of the bill appreciate exactly what the bill is attempting to accomplish. The Care Act lays out the requirement for parents to submit to schools a diabetes self-management plan that reflects "current standards of diabetes care."44 Additionally, guidelines are provided for schools to train their own "designated diabetes care aides," at least one of whom must be available during school hours if the school has any students with diabetes.45 This training must be specific to the treatment plans of any of that school’s students with diabetes.46 In addition to the designated aides, any school employee may acquire information on diabetes through a required fact sheet.47 Once a self-management plan has been submitted and school employees have been trained, a student with diabetes "must be permitted" to perform the various tasks related to managing their diabetes and to carry all the equipment and supplies necessary to do so.48 Schools are also barred from restricting access to the school based on a student’s diabetes.49 Lastly, the Care Act protects schools from civil liability (other than willful or wanton misconduct) arising from dealing with a student with diabetes and insulates school employees who decide not to be diabetes care aides from disciplinary repercussions based on that decision.50
The Care Act is nearly ideal in its execution of the principles propounded by the American Diabetes Association and other advocacy organizations.51 By making diabetes self-management programs mandatory for parents to formulate and for schools to follow, the Act accomplishes the goal of allowing schoolchildren with diabetes to participate fully in their education while maintaining their health in the best possible manner. Schools are again protected from liability (within reason) and from overpowering external influences on the educational environment.
There are, however, areas of concern within the Care Act. First, there is no stated cooperative procedure for the formulation of a student’s self-management plan; the parent or guardian has sole discretion once a diagnosis of diabetes has been proven.52 Not allowing schools to have any input on the plan, and hence less control over the educational environment, is likely to make them much more reluctant to support this measure. Also, it may impose additional costs upon schools. However, if a school is allowed to have input into the diabetes care plan, then the likelihood of wasting school resources is much less. Additionally, unlike a similar statute already in effect in Nebraska, there is no safety provision and no delineated procedure for dealing with students who misuse their diabetes equipment or supplies.53 This opens the Care Act to a very valid criticism; how do schools ensure the safety of all students without falling afoul of the mandatory provisions of this legislation?
The Care Act is a thorough and well-drafted answer to the school problem, and admirably makes its way through several potential pitfalls. Is it, however, the ideal solution to the discrimination against Illinois schoolchildren with diabetes?
C. Weighing The Options
While it is clear that Illinois schoolchildren with diabetes face a unique form of discrimination related to their disability, the ideal solution to that problem is not nearly as clear. Should the solution be derived from federal anti-discrimination law, existing state-level civil rights legislation, or from pending Illinois legislation?
While the Americans with Disabilities Act Amendment Act of 2008 is an admirable and appropriate piece of legislation, it does not fully address the concerns of the school problem. The ADAAA is generally applicable to diabetes and to schools, but maintains notable exceptions for certain religious and private institutions.54 It is also sweeping in its nature, and its implementation might miss the specific concerns faced by schoolchildren with diabetes. It simply does not specifically address these educational concerns.55 The Illinois Human Rights Act is an equally commendable legislative enactment, but it gives much discretion to school administrators and personnel in their control of the classroom environment.56 The most direct solution is specifically-targeted state level legislation, like that already enacted in many states,57 and currently pending in Illinois.58 By addressing the school problem directly, while still taking into account the specific conditions present in any particular state, such legislation is both the most effective and least problematic of solutions.
State statutes, however, are not without their critics. There are several valid criticisms of the state legislation-based solution.59 One of the most blank-faced of these is that the problem is best addressed through vigorous advocacy and not through legal channels at all.60 While this critique may have been strong when the problem was first thoroughly raised in the public eye, the longer the problem remains prevalent despite such advocacy, the weaker the critique becomes.
Another oft-expressed concern with state-level legislation is that most of the laws provide no clear enforcement mechanism.61 This is a more valid concern, as none of the examined statutes elaborate on enforcement mechanisms, leaving students and their families to force compliance through potential or actual legal action, something these laws attempt to circumvent in the first place by creating a separate mandate to allow self-management.62 Ideally, though, these laws allow for a cooperative effort between schools and parents, thus encouraging a less contentious situation that can avoid more aggressive enforcement mechanisms.63
The most striking critique of state legislation, however, concerns a lack of focus; while the professed intention is to eliminate discrimination, the statutes lack any mention of such a purpose whatsoever.64 This is true for many such statutes, which address the discrimination only symptomatically, by attempting to eliminate the effect of the discrimination, namely the prevention of self-management by schoolchildren with diabetes.65 However, the statutes still eliminate the underlying problem of discrimination, regardless of whether they directly address it. When the effect of the discrimination is eliminated, addressing the underlying cause might become a moot issue.66
Other critics of state-level legislation include various professional associations of teachers and educators: in Illinois, both the Illinois Federation of Teachers and the Illinois Education Association have publicly expressed opposition to the Care Act.67 The concerns of these groups generally fall into one of two categories: teachers (instead of medical professionals) should not be responsible for medical care and state legislation unnecessarily adds on to the cost of education.68 As far as the latter, while state level legislation addressing the needs of schoolchildren with diabetes tends to be unfunded, it also tends to utilize only existing school personnel, as well as rely on the efforts of parents and non-school health care providers. This minimizes the potential financial burden on schools by restricting the burden to those who either wish to undertake it (parents) or those who already have a health- or education-related interest in the child. The former concern goes to the heart of the problem; it is only because most people do not understand diabetes that they are so anxious about managing it (or assisting in managing it.) The vast majority of diabetes care is done without the direct supervision of medical professionals; it is done by the individual with diabetes.69 Once properly informed of the limited but important role they can serve, educators will be more likely to accept their own ability to assist students in the self-management of their diabetes.
The plight of Illinois schoolchildren with diabetes is clear. With a pervasive lack of understanding of diabetes, particularly type 1 diabetes, discrimination is a nearly inevitable result. On the state level, the IHRA has addressed many of the concerns of individuals with diabetes, but has left the school problem unsolved. What remains for Illinois is to address the problem directly and locally, following the example of other states who have decided to directly address this pervasive and alarming problem. Illinois has started, but the task is not yet done. Once the Illinois Care of Students with Diabetes Act is passed, Illinois schoolchildren will finally have the protection they need.
My warmest thanks go out to my family and friends for their support during the production of this article. I specifically thank all the medical professionals in my family for their expert insight and advice. Lastly, I thank my parents, Joseph and Janet, without whom none of what I have ever accomplished would have been possible.
1 Sch. Bd. of Nassau County v. Arline, 480 U.S. 273 (1987).
2 Diabetes Statistics – American Diabetes Association, http://www.diabetes.org/diabetes-statistics.jsp (last visited Feb. 5, 2009).
3 See generally Amy M. Kimmel, Note, Insulin: Can’t Be Disabled with It—Can’t Live Without It: Creative Solutions for Employees with Diabetes Claiming Disability Discrimination in a Post-Sutton World, 52 Hastings L.J. 749 (2000-2001).
4 See Safe at School Campaign– American Diabetes Association, http://www.diabetes.org/advocacy-and-legalresources/discrimination/school/safeschool.jsp (last visited Feb. 5, 2009).
5 Carolyn Starks, Parents Fight for Diabetic Kids’ Rights, Chi. Trib., Dec. 8, 2008, available at http://www.chicagotribune.com/news/local/chi-diabetes-08-dec08,0,6388020.story?page=1.
7 See supra note 4.
8 Type 1 Diabetes – What is Diabetes? : Juvenile Diabetes Research Foundation International, http://www.jdrf.org/index.cfm?page_id=101982 (last visited Feb. 5, 2009).
9 Id. (the terms “juvenile” and “adult-onset” have lost favor in the diabetes community, due in great part to their increasing inaccuracy, especially as type 2 diagnoses among children and adolescents have begun to rise).
10 Insulin is a hormone normally produced by islet cells in the pancreas. See Am. Diabetes Ass’n., Medical Management of Type 1 Diabetes (Francine R. Kaufman, ed., American Diabetes Association, 5th ed., 2008) (1992).
11 Glucose, also known as “blood sugar” is the basic component which all nutritive intake is broken down into. See Am. Diabetes Ass’n., Medical Management of Type 1 Diabetes (Francine R. Kaufman, ed., American Diabetes Association, 5th ed., 2008) (1992).
12 Type 2 Diabetes: Conditions, Treatments, Resources – American Diabetes Association, http://www.diabetes.org/type-2-diabetes.jsp (last visited Feb. 5, 2009).
13 Type 1 Diabetes, supra note 8.
14 See Tight Diabetes Control – All About Diabetes – American Diabetes Association, http://www.diabetes.org/type-1-diabetes/tight-control.jsp (last visited Feb. 5, 2009).
15 July 06 Myths and Misconceptions: Juvenile Diabetes Research Foundation International, http://www.jdrf.org/index.cfm?page_id=105381 (last visited Feb. 5, 2009).
16 See Tight Diabetes Control, supra note 14.
17 20 Ill. Comp. Stat. Ann. 4055/1 – 4055/99 (West 2006).
18 20 Ill. Comp. Stat. Ann. 1330/1 – 1330/99 (West 2007).
19 20 Ill. Comp. Stat. Ann. 4055/5 (West 2006). The ISDC members include the Secretary of Human Services, health care professionals with training and certification in diabetes-related matters, diabetes advocacy group members, and members of the public with diabetes. Id.
20 20 Ill. Comp. Stat. Ann. 4055/25 (West 2006).
21 20 Ill. Comp. Stat. Ann. 1330/5 (West 2007).
22 20 Ill. Comp. Stat. Ann. 4055/25 (West 2006).
23 See DHS: Illinois State Diabetes Commission, http://www.dhs.state.il.us/page.aspx?item=36565 (last visited Feb. 5, 2009).
24 775 Ill. Comp. Stat. Ann. 5/1-101 through 5/10-104 (West 2006) [hereinafter “IHRA”].
25 775 Ill. Comp. Stat. Ann. 5/1-103 (West 2006) (“”Disability” means a determinable physical or mental characteristic of a person, including, but not limited to, a determinable physical characteristic which necessitates the person’s use of a guide, hearing or support dog, the history of such characteristic, or the perception of such characteristic by the person complained against, which may result from disease, injury, congenital condition of birth or functional disorder.”).
26 775 Ill. Comp. Stat. Ann. 5/5-101(A)(11) (West 2006).
27 775 Ill. Comp. Stat. Ann. 5/5-102 (West 2006).
28 Hereinafter “IHRC”.
29 775 Ill. Comp. Stat. Ann. 5/5-101(A)(11) (West 2006).
30 775 Ill. Comp. Stat. Ann. 5/5-101(A)(11) (West 2006).
31 See discussion infra Part III.B.
32 See Christopher W. Goddard, Children with Diabetes, Are State Statutes Needed to Protect Students’ Rights?, 34 J.L. & Educ. 497, 506-07 (2005); see also Diabetes Care in Schools – American Diabetes Association, http://www.diabetes.org/advocacy-and-legalresources/state-legislation/schooldiscrimination.jsp (last visited Feb. 5, 2009); see also School Legislative Efforts – Advocacy & Legal Resources – American Diabetes Association, http://www.diabetes.org/advocacy-and-legalresources/discrimination/school/legislation.jsp (last visited Feb. 5, 2009).
33 See School Legislative Efforts, supra note 32.
34 See School Legislative Efforts, supra note 32.
35 Or. Rev. Stat. § 433.825 (2007).
36 Neb. Rev. Stat. § 79-225 (2008).
37 See discussion supra Part II.B.
38 Illinois General Assembly – Bill Status for HB 0146, http://www.ilga.gov/legislation/BillStatus.asp?DocNum=146& GAID=9&DocTypeID=HB&LegId=2676 0&SessionID=51&GA=95 (last visited Feb. 5, 2009).
39 Hereinafter “Care Act”.
40 See HB 0146, supra note 38.
41 See HB 0146, supra note 38; see also Starks, supra note 5.
42 The Care of Students with Diabetes Act in Illinois: Progress Report, http://thecareact.com/Progress_Report.html (last visited Feb. 5, 2009).
43 H.B. 0146, 95th Gen. Assem., (Ill. 2007).
46 Id. For example, if a student at that school uses an insulin pump, as opposed to a syringe, to inject insulin, then that school’s diabetes care aides must be trained in insulin pump therapy. Id.
47 H.B. 0146, 95th Gen. Assem., (Ill. 2007).
51 See Safe at School Campaign, supra note 4; see also School Position Statement: Juvenile Diabetes Research Foundation International, http://advocacy.jdrf.org/index.cfm?fuseaction=home.vie wpage&page_id=BBBD617D-1321-C844-1392953921D979E8 (last visited Feb. 5, 2009).
52 H.B. 0146, 95th Gen. Assem., (Ill. 2007).
53 Neb. Rev. Stat. § 79-225 (2008).
54 42 U.S.C. § 12187 (2000).
55 See generally Alex B. Long, Introducing the New and Improved Americans with Disabilities Act: Assessing the ADA Amendments Act of 2008, NW. U. L. Rev. (forthcoming 2009).
56 See discussion supra Part III.A
57 See discussion supra Part III.B.
58See discussion supra Part III.B.
59 See James F. McKethan & David H. Phillips, State Statutes to Protect Children with Diabetes: Noble Intentions But the Wrong Approach, 35 J.L. & Educ. 501 (2006).
60 Id. at 508.
61 Id. at 505.
62 Id. at 505.
63 Id. at 505. (examining potential for better treatment of students through cooperative educational efforts instead of mandated self-care statutes).
64 Id. at 505.
65 The Illinois Care Act is an exception to this, making its goal of eliminating discrimination via self-management clear from the outset. See discussion supra Part III.B.
66 See Safe at School, supra note 4.
67 The Care of Students with Diabetes Act in Illinois: Opposition Memos, http://thecareact.com/Opposition.html (last visited Feb. 5, 2009).
68 The Care of Students with Diabetes Act in Illinois: Concerns and Clarifications, http://thecareact.com/Concerns.html (last visited Feb. 5, 2009).
Michael P. Hantsch, J.D. candidate, May 2010, Northern Illinois University College of Law; B.A., English, Marquette University 2001.