There is nothing comedic or trivial about handicaps, disabilities, and/or special medical or developmental needs. "Reduction to absurdity" is a technique of debate in which a premise is taken to, or past, its logical extreme. While this can be used to belittle an opposing viewpoint (Google "Godwin's Law"), it can also encourage thoughtful discussion.

I will also aim to use the definitions of student accessibility to public education expressed here.

Leighann at D-Mom Blog recently posted about proposed legislation in Illinois to mandate full inclusion of all schoolchildren with diabetes, in all schools in every school district in the state. The proposal allows for the education and empowerment of specific school staff members as "designated care aides" to help students get the diabetes-related medical care they need, when they need it, whether or not the district is able to provide for full-time school nurses at all schools in the district. (Compare this with the California law that limited all in-school diabetes-related care to what might be the one-and-only school nurse for the district, who may only be at the school one day out of the week.) Leighann's post reminded me of some thoughts I had last May after reading one of Dr. Marion Nestle's columns in the San Francisco Chronicle.

In that column, Dr. Nestle addressed the issue of cafeteria accommodation of public school students with celiac disease. Under the Americans With Disabilities Act (ADA) -- the same act that prohibits discrimination against, and provides "reasonable accommodation for", people with diabetes -- and the Individuals With Disabilities Education Act (IDEA), schools are required to make "reasonable accommodation" for students and staff with celiac disease. One school chef meets this requirement by preparing "alternative food" for the two people (out of 500) at his school who require gluten-free diets.

While it is possible to accommodate people with celiac disease with creative menus and kitchen care, the same cannot be said about all medical issues. Consider, for example, a child with a peanut allergy so severe that he cannot be near anyone who has eaten or handled peanuts or peanut products, or in a room where those products had been present within the past several days. Accommodating such a child would seem to require that no student, faculty member, or staff member at that school, nor anyone else in their households, touch, use, or eat any peanuts or anything containing peanut derivatives, ever.

Given that 500, 1000, or 10,000 people may be limited by the allergic reaction of one, is it reasonable to demand this level of accommodation? (Could such a policy even be enforced?) What about the liability if only one person in that community were to inadvertently, over the weekend or on vacation, violate that restriction and the allergic child died because nobody at his school could legally use his epi-pen? Between the costs of implementating and enforcing the "peanut restriction" and the potential legal liability, it would seem more reasonable for the school to say either, "We cannot accommodate this student" or "We can only accommodate this student in the 'special education' school in the district, where we have a higher degree of vigilance and a full-time school nurse".

It is but a step from there -- "we cannot reasonably include a child with a severe peanut allergy" -- to being unwilling and/or unable to accommodate a student with something less restrictive, such as, well, diabetes. "We cannot provide the budget necessary to keep a school nurse in your neighborhood school full-time, five days a week so your child can test himself at the appropriate times and so the nurse can administer his insulin (or use his glucagon kit if necessary); therefore, your child cannot attend the neighborhood school. (It may be possible to centralize him to the Special Ed class -- but only if you can guarantee that his custodial parent will personally drive him to school every morning and pick him up from school every afternoon.)" Given the increasing pressure on school budgets, it is not difficult to imagine this sort of scenario... or worse. (In the time and place I grew up, wheelchair-bound but otherwise intelligent students were warehoused along with the emotionally-disturbed and developmentally-disabled, rather than educated along with the rest of us.)

The legislation proposed in Illinois states that centralization is not a "reasonable accommodation" for children with diabetes, nor is it an acceptable alternative to full inclusion.

The question that keeps nagging at me is, "Where do we draw the line?" What is reasonable accommodation for the student in the wheelchair, the student with the peanut allergy, the student with the insulin pump? And if that definition of "reasonable" requires separation of any sort, what can we do to remove as many barriers as possible to make an academically rigorous education available to every student, in a safe and supportive environment that provides ample opportunity for social development and cultural integration, without bankrupting every parent, school district, state, or nation in the process?

While some work has been done with programs which allow a child who might not otherwise be able to attend school (i.e., an excluded child) to participate in classes via the Internet, if that child must remain at home because the school district can't (or won't) support reasonable in-school accommodation, it puts an additional burden on the parent who must stay home with the child (rather than earning the money needed to pay for that child's medical needs) -- regardless of whether the child follows the school district's curriculum or a homeschooling curriculum.

The legislation proposed in Illinois argues that full inclusion for children with diabetes can be achieved safely and economically by engaging and activating an on-site cadre of the adults who are already entrusted with our children's health and safety.

There are no easy answers, and few inexpensive solutions. But when I look at the educational system issues that plague Leighann, Carey, Julia, and other parents of T1 children, I need to draw out the questions to their (il)logical limits. There's no reason for beautiful, intelligent children to be handicapped by the same schools that should be educating them instead.

At first glance, it looks like the proposed legislation in Illinois will go a long way towards making that happen for children with diabetes. Hopefully this will be a first step towards improving our ability to fully include as many children as possible in our classrooms.