Tuesday, June 15, 2010

Who Takes Charge?

I live in (and grew up in) a very economically depressed area. The very small town in which I live used to be a factory town. When NAFTA was happening, nearly every factory left town. Currently we have 2 that employ a very small amount of people. In my town there are very few jobs. I am one of the lucky ones. Not only do I have a decent job, I have a job with fantastic health insurance. I do okay, on my own.

When I was growing up (until their divorce) both my parents worked. This is an area that it really takes two incomes to make it without relying on state and government assistance. I was diagnosed with diabetes about 6 months before I started kindergarten. This was in early 1986, so it was in the days of exchanges for food, brick sized glucose meters, and NPH and R insulin that was administered twice a day. I took a shot at breakfast and at supper.

Because of my twice daily insulin regimen, my parents didn't have to worry about anyone, outside themselves, giving me insulin. But it was still a constant struggle of highs and lows, morning and afternoon snacks, and teachers that could test my blood sugar if I needed it. By first grade I was testing on my own, but still under teacher supervision.

If I had a bad low, my mother was in a job that she could, if absolutely necessary, leave to come be with me.

These were all things that helped make it easier on my parents when it came to raising me. There were no 504 plans made for me. My county didn't have school nurses until after I graduated from high school. My teachers knew the signs of a low and knew what to do if it happened. Other students looked out for me. They also knew the signs. If I needed a snack, I got it. If I needed a drink, I got it. There weren't questions about it. There was never any trouble. Or any real need for parental intervention when it came to my diabetes care while I was in school.

That being said, diabetes care has improved greatly since I was in school. There are insulin pumps, multiple daily injections, carb counting. Heck, we even realize we have to test more than 4 times a day. Because diabetes has become a constant care situation, there is a need for someone to be able to help small children with their diabetes care while they are at school. The first suggestion, of course, is that a nurse should be there to help that child.

But what does a parent do if there is not a nurse at the school? Or a nurse isn't there full-time? Who makes decisions then? Who administers insulin, glucagon, counts carbs and helps determine insulin dosages?

Those of us who live with diabetes every day realize that it take time to learn what to do, but that it is possible to do it on our own. We have to do it on our own or else move into a hospital.

Earlier this week I read two different blog posts (one at The Corner Booth and another at Diabetes Mine) that informed me that the state of California has overturned a ruling that allowed teachers and other school administration the right to help administer insulin and glucagon to diabetic students. Basically a nurse must administer all medications.


California is notoriously short on school nurses at this time. Who's supposed to help a child with the immediate care they need? Apparently a parent. But wait...don't most parents WORK? I mean, mine did. IF a family is lucky, they MIGHT be able to have a parent stay home full time. This would be nice. But in reality, you are dealing with a huge number of single parent homes and houses where both adults work.

So in a single parent home, say the parent (most likely a mother, but could be a single father) has a diabetic child. Suddenly the school says "Sorry. We're no longer allowed to take care of your child when he/she's in school. But there's a nurse here on Mondays from 10-2. How's that for you? Does that work?"

So single mom, or single dad, has to quit his job to take care of his child. And the home they owned/were renting, they can no longer afford. Not to mention they don't have insurance. So what happens then? They go into a social services office. And suddenly, because the state of California couldn't allow an intelligent adult the right now help a diabetic child, you have a family on the system receiving federal health care, probably cash assistance, housing assistance, food assistance, etc.

Please tell me how that makes sense? Please? Because I'm at a loss here.


Rachel said...

It is so infuriating. And I'm sure they want the parent there, not a grandparent or aunt or sibling or babysitter.

This is a great post on a sad situation, thank you C.

Jami said...

are you serious? I know here you have to have written consistent and be trained to use an epipen. There is sooo much paper work involved to prove that it's necessary for Natalie to even take hers to school next year and I'm afraid it may only get wore when Aggie is in school. I can only imagine...

meanderings said...

I'm glad you posted this. I've read about it and am angry that California families will have one more issue to deal with on a daily basis.
It's scary.

Anonymous said...

Thanks for posting, Cara. And for the shoutout to the D-Corner Booth, thogh it's sad we're even having to write about this issue. The legislature there needs to address this, because you're right: it's not fair for families who just can't stay at home and be on call every hour of the school day. I feel schools are going to feel the effect of this when kids start having problems and medical emergencies arise... Sadly, that may be more motivation to the California lawmakers than anything. Hope not, though.