Please take a moment to sign Pennsylvania Diabetes School Care Legislation, a piece of legislation that would ensure children with diabetes in Pennsylvania would attend schools with staff beyond the school nurse who have some training in diabetes management. Having three staff members who have been trained in diabetes management is too much to ask of Pennsylvania’s schools to help keep the 8,000 children with diabetes safe in the schools. I’m sure if the kids in PA knew about this petition, they’d say “Thank you for supporting us!”
Will do! Came from a time they didn’t even have a school nurse.
Doris Dickerson
I feel like activist. I signed it. I don’t even live in PA, but neither do some of those other people who live in like Belgium. In either case, I believe in the cause and would like to note that PA is not the only state with unacceptable standards.
I know! It’s shameful that 27 states do not have some sort of standards to help deal with the needs of the students with diabetes. Yet, according to PL 94-142/IDEA (Education of all Handicapped Act/Individuals with Disabilities Education Act), schools are obligated to provide for the educational needs of children with “Other Health Impairments” – i.e. asthma, cancer, and (of course) diabetes. A child cannot be educated if the child has health needs that are not being met!
Thanks, Doris! I never went to a school that didn’t have a school nurse, but that doesn’t mean that having a school nurse was actually helpful. When I broke my leg jumping off a balance beam in 9th grade, the school nurse didn’t even want to put an air brace on it. She felt I was being a whimp and I should “just walk it off”!
So if schools are already obligated by law, then why don’t they do it? Why should states have to pass additional laws to “comply?”
You know I will sign it Angela. I am also forwarding it to a friend who has a T1 teenager in a PA school.
Awesome, Kelly! It’s a sad state of affairs when, more than 35 years since PL 94-142 was passed by Congress, children who are covered by the act still have to fight for their rights to attend schools safely.
LONG POST WARNING!!
That’s a good question and sadly, the answer is not a simple, easy one. I’ll try to explain.
First, let’s look at the parents (and I’m not parent-bashing, for those parents who are reading this). Many parents of diabetic children are unaware that their children qualify for services under Section 504 of the Rehabilitation Act of 1973 and PL 94-142, the original Education of All Handicapped Children Act of 1975. Part of the reason parents are unaware their children qualify for services under these acts is because of the common perception that this law is meant to help only children with developmental disabilities (covers both mental retardation and autism), learning disabilites, emotional disabilities, vision impairment, and hearing impairments. In my interaction with parents of children with diabetes, I have found that there are some, even those who are teachers, who are unaware that the law was written to include children with other health conditions and that the law specifically mentions diabetes. Because of this, there is a stigma associated with getting the IEP, the Individualized Education Plan required by law for each student with a disability. The thinking is, “IEPs are only for kids who are not very bright, or who cause massive trouble, and my kid with diabetes isn’t like that. Therefore, my kid doesn’t qualify for an IEP.” Without the demand for the services from the parents, schools can think they are doing an adequate job of providing for their students with diabetes. With (some) parents believing their children do not qualify for services under IDEA or Section 504, or that these services are only meant for children with “more severe” problems than “just diabetes”, of course there isn’t going to be a demand for them. I don’t blame the parents. This has been the perception of the general public and even teachers for more than 3 decades as far as I can tell. It’s truly sad.
Schools and teachers are also part of the problem. Back in 1996 or 1997, a study published in the journal Exceptional Children showed that overall, most teachers, even teachers who had degrees in special education, lacked fundamental knowledge of how to deal with children with physical and other health impairments. IOW, if a student with parapeligia is placed in a classroom, the teacher is not likely to know what to do with that student. My impression, having been in graduate schools of education, is that departments of special education do not offer sufficient training in disabilities outside of the ones I listed above. The reason for this is that there are far more children with those disabilities than, say, type 1 dm or who are HIV-positive, so teachers are more likely to have to deal with those disabilities than students with health disabilities. I’m not blaming teachers; they are in a situation where they not only have to teach academics, but they have to be social workers, nurses, family counselors, accountants, artists, entertainers…the list goes on. When viewed from the perspective of the teachers, diabetes becomes a small aspect of classroom life.
Economics also plays a role. Money for programs under these laws comes from both federal and state funds, both of which have been drying up over the past few years. Federal funds are disbursed to the states, which then disburse them to the districts based on the needs of the district. The majority of the money is usually marked for children with LD, Developmental Disabilities, and/or Emotional Disabilities. School districts have a reasonable fear that if they provide services to children without these problems, they will be denying federally-mandated access to children with these problems. Further, many school districts have had to make cut backs in order to accommodate No Child Left Behind (NCLB), and one of the cut backs that was made was in the number of nurses available to the schools. Well, there’s that and there is a shortage of nurses in the US, so between the two, nurses have become an expensive commodity for school districts.
Then let’s think about societial attitudes. Despite far more advertisements for blood glucose testing over the past 10 years, there is still a taboo against blood and a fear of blood. It’s not without cause, since you can get awful diseases, such as AIDS from the blood of someone who is infected with it. So, who would you ask to be one of the three staff members who will take that risk? The secretary who likely earns only a few dollars over minimum wage? The teacher, who already takes risks with bloody noses, cuts and scrapes, and vomit? The principal, who is supposed to be managing the school and minimizing risks to everyone? So, by “ignoring” the issue, not letting people know about their rights, you effectively bypass this sticky issue of who is going to put themselves at risk for a kid’s blood test and/or insulin injection.
Finally, there’s the law itself, and by this I mean IDEA. The law demands that children be disabled “for the purposes of education”. That’s how it was originally written, and when the Congress wrote that, I’m sure they thought they were being clear. But, what exactly does that mean, “for the purposes of education”? For children with developmental disabilities, learning disabilities, and/or emotional disabilities, it’s a little clearer, perhaps because the problems directly related to the activity, i.e. schooling. If you’re 10 and you can’t read “Dick and Jane” books, there’s a problem. If you’re 5 and you can’t pick up a toy block, there’s a problem. But, if you’re 12 and you’ve just been diagnosed with diabetes, it’s not as clear how that impacts your ability to be educated. At least it’s not as clear to many within the educational system. After all, having diabetes doesn’t cause you to lose your ability to read, write, or do math. You can also play and run with your friends, cut straight lines, and look at art. What they fail to understand is the impact of injected insulin on the child – and how that insulin interacts with diet, stress, and activity (to name just three factors impact bgs). For instance, let’s take the ubiquitous field trip to the museum. It’s going to be a half-day event with a lot of walking and a lot of excitement. Excitement (stress) raises bgs, but the walking will lower them. Let’s also say that the child’s lunch will be delayed by 1.5 hours. Child eats at the usual time with the usual amount of carbohydrates, and is sent off to school, perhaps a bit higher than usual because of the excitement. Get to the museum, start walking around, while, all the while, the clock is ticking. What’s likely to happen? There’s a chance the child could go low, pass out, need help from the teacher or museum employees. Does that not show the child is “disabled for the purposes of education”? It’s not unusual for parents of children with diabetes to be told that the only way their child will be allowed to go on field trips is if the parent accompanies the child in case of a medical emergency, even though the child is not considered disabled for the purposes of education. Because the child does not need help all the time with basic things such as reading, writing, or hanging up his coat, there are teachers and administrators who do not believe that the law applies to the child with diabetes, since the child is still as intelligent as ever. I personally think that if a medical problem adds limits to the child’s educational opportunities, such as being able to go on a field trip, then the medical problem is “disabling for the purposes of education”. IMO, you can’t say the child is not disabled for the purposes of education and is not eligible for services in one breath and then in the next say that because of his/her condition and the uncertaintity inherent in the condition, the child is not allowed to go on educational (and sometimes required) field trips with his/her class or that the parent must come with the child in order to take advantage of that educational opportunity. In my mind, that is a de facto admission that the child has a disability – a life-limiting condition! However, not everyone agrees with that and the issue becomes even muddier when you add in pumps, CGMS, and (yes) even insulin. After all, with insulin, you are able to live and live a relatively normal life. Sort of. Therefore, you’re not disabled. At least that’s what the Supreme Court ruled a few years back when a WalMart pharmacist with Type 1 dm sued WalMart to get his job back after being fired for closing down the pharmacy for 1 hour every day so he could eat (he was the only pharmacist on-duty for the 11 hour shifts). So, the law and its interpretation can be and has been problematic, making it difficult for school districts to adhere to the law despite their best intentions!
States end up having to pass additional laws to comply with the original law because of these and other complexities – and they feed into one another. As I see it, it boils down to is this: Parents, teachers, and administrators do not fully understand the law, do not understand diabetes, and do not have the resources to adequately address the unique needs of children needing this coverage. Colleges and universities fail in their duties to adequately educate future educators about this group of children who may end up in their classrooms. Society still stigmatizes some of the activities children with diabetes need to do and drawing up 504 plans or IEPs just adds to the stigma (though not being able to go on field trips also adds to the stigma). Interpretation of the law changes over time, leaving “gaps” in compliance with the law where once there was none. In the end, it’s nobody’s fault and it’s everybody’s fault when kids with disabilities are inadequately educated. But that’s just me.
Sorry for the length, but this is within one of my areas of “expertise”.
I am happy to sign. I often think about school children who have D. I’m aware that there are not always nurses in every school in the system. I have often thought about volunteer to be a person who can help students with their D problems. I know it would take an act of congress before Phila. school system would accept my help…I use to work in the system.
This was interesting having been a child with diabetes in PA school district. And the part about parents not knowing about section 504 or that it could apply to us doesn’t surprise me. I never knew about it until reading about it here some 10 years post school…
Thanks for letting us know about it and I’m going to let my family know too 
Yowza, I can see you care about this. I didn’t have time to read this the first time and had to come back to it. I guess I agree with you. I have had a child with an IEP for many years so I’ve had to navigate the system and learn about it. What I don’t understand is how a huge state (like PA) can go for nearly a decade without a rich smart parent getting p*ssed off and dragging their *ss into court with a class suit. Perhaps I have just gotten spoiled, my school system is one of the better ones and while I have gotten push back when demanding accomodations I also have felt that in most cases the school has always caved and given my child a safe and equal access to education.
Perhaps you need to just start a petition for the other 27 states. I’ll sign the petition.
Unfortunately, even the wealthy don’t know their kids are eligible for this service. Even when they do, they are reluctant to use it because of the stigma associated with “special education”. I’ve even known teachers with kids with diabetes who didn’t know their kids were eligible. If you don’t know, and you’re reluctant to use it, you’re not going to get the educational services your kids deserve.
Done! Forwarded to two friends in PA.