Problem: In September of 2014, my five year old son was diagnosed with Type 1 diabetes.
Problem: Although my wife and I work in the medical field, we had no idea how complex diabetes is.
Huge Problem: At the time of his diagnosis, my son was in kindergarten in the Los Angeles Unified School District (LAUSD).
The LAUSD is not properly designed to, nor can it handle children with diabetes. We learned this the hard way when the district nursing office called to tell us that Type 1 diabetes does not require full time nursing care at school. Not even for a very young child. With the realization that our school district was treating Type 1 diabetes like a minor scratch, I knew our situation was going to get nothing but worse.
So when my son began kindergarten, either my wife or I sat in class with him 5 days a week, the entire day, to check his blood sugar, administer insulin, and all of the other things that go along with diabetes management. The school he attended, although one of the better schools within the LAUSD, had the funds to have a nurse on campus only one day a week. Once a week?! What good did that do us?
Within six weeks of diagnosis, my son was on an insulin pump, but it took the school at least three months to send nurses everyday to help our son with his insulin. And then, the best they could do was to send a different person for recess and lunch to deliver insulin. Since my son knew how to use his pump to deliver a bolus, the nursing service was essentially useless.
The only saving grace was that his teachers were very supportive of us, and went out of their way to help in any way they could. The assistant teacher provided primary care, and in no way was she required to do what she did. She supervised my son as he checked his blood sugar. She would always walk him to the health office, and she always stayed with him when he was hypoglycemic. Those two teachers are the only reason he completed kindergarten at this school.
We knew that first grade was going to present us with another problem because after kindergarten an assistant teacher is not present. What teacher is willing to have his/her class constantly interrupted due to a diabetes related issue? What teacher wants the responsibility of checking a blood sugar, correcting a low or high, and being in constant communication with us? We were desperate for a better solution, and the only one we could think of –private school- came with a heavy price. Then again, you can’t put a price tag on your child’s life, right?
My son was accepted into the same private school that I’d gone to as a kid, which made my wife and me very happy. The school has a full time registered nurse all day, every day, in addition to a licensed vocational nurse to assist with any medical needs. The nurse has many years of experience, and has been employed by the school for ten years. She has had at least one diabetic child every year, and is well versed in Type 1 diabetes management. The only obstacle facing us was how to pay for school. Thankfully, the school offered us a very generous financial aid package.
So far, our plan of removing our son from the public school system has paid off in dividends. The level of care he is receiving is outstanding, and the nurses are aware that even with all of their knowledge, they don’t know everything. They never hesitate to ask what we think, or what we want them to do. We have a wonderful relationship with them, and they treat my son as if he were their own child. He is happy, healthy, and his last A1c check was 5.7%! The nursing staff is a huge reason why.
Though we are glad he is in a much better environment to help ensure his safety, and at a far superior school, we are also upset that we felt obligated to make this change. Because our son has diabetes, the public school system failed him, and left us with no other choice but to place him in a private school.
It is extremely disheartening to know that because my son no longer falls into the “normal box” that the public school system was designed for, he is set up for nothing but problems. The public schools are obligated by law to provide a free and appropriate public education (FAPE). When diabetes is part of the equation, it’s not just the classroom component that should be included. If a child’s safety can’t be guaranteed, everything else goes by the wayside. The school system needs to reconsider the meaning of FAPE, and realize its complexities. Until then, children who don’t fit the mold (and their families) may be stuck in impossible situations. We’ve been lucky so far. We found a way out. Not everyone has that fortune, and no one should need to.
The crux of the problem is the lack of funding for school nursing services. It is the local elected school board members who designate the priorities for district funding. For instance, in my experience, salaries for multiple football coaches have been easily funded in order for the district to win championships. Sadly, there is very little recognition by school board members of the true extent of the myriad of complex chronic medical conditions (including Type 1 Diabetes) that children require professional nursing care for during the school day. State legislators are just as clueless when they pass bills which permit… Read more »
Brian and family, I am so sad to hear of this treatment by a public school system. This is a direct violation of the Americans with Disabilities Act. You can and should obtain a 504 Accommodation Plan for your child which will protect his rights, safety and health while in school, whether private or public. Vera’s comment (above) listed very important contacts for any family with a child with a medical condition or disability. Every child, especially those with a life threatening chronic condition, deserves to have access to onsite care (for the full school day) by a professional school… Read more »
You should know that the reason california does not require nurses for students with diabetes is due to recent ruling by Obama administration… they stated it is fine for california to use trained staff people like the teachers to treat diabetes.
As a school nurse in Washington state, I can sympathize with this father’s story. I, too, wish there was a school nurse in every building, every day. However, in this case, I’m not so sure it was the public schools that failed him. It was the legislators and the American Diabetes Association who failed him. I find it interesting that one of the comments mentioned contacting the American Diabetes Association to work as an advocate. My experience with the ADA has not been positive. In fact, the ADA was a major driving force in the legislation in California that almost… Read more »
In Ohio, parents supported an effort which took this type of issue to the State general assembly. It is now REQUIRED by school districts to providing nursing care for Type 1 diabetics. I would recommend a grass roots effort to work with your state house reps and senators to develop legislation.
But not everyone can afford a private school, and nor should they have to. It makes me angry that everyone thinks they know what diabetes is about, and that it’s not really a big deal. Alongside everything else we have to do for our children, that we didn’t ask for, and weren’t expecting, we have this fight to make people understand, and stop judging. That’s the worst of it.
The New York Times just published a story about this issue (“Many Schools Failing on Type 1 Diabetes Care”). The article had a list of resources parents could contact if their children were not receiving adequate care. They included:
– The ADA’s legal hotline: 1-800-DIABETES (800-342-2383)
– The US Department of Education’s Office of Civil Rights Complaint Form: https://wdcrobcolp01.ed.gov/CFAPPS/OCR/contactus.cfm
– The Department of Justice’s ADA Complaint form: http://www.ada.gov/fact_on_complaint.htm
– The JDRF’s school advisory toolkit: http://jdrf.org/wp-content/docs/JDRF_School_Advisory_Toolkit.pdf
– The ADA’s website to look up state laws regarding diabetes care: http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/legal-protections/school-laws-and-policies/
Our child was diagnosed at age 4. Our older child went to a public charter school that did not have a nurse. They knew federal law still required them to care for him, but we got the same feeling from them- that Type 1 was like caring for a kid with a scratch or who needed to take a pill once a day. We just could not trust them since they seemed to not even grasp how dangerous the condition is. Our child with Type 1 now goes to our local neighborhood public school down the street where they get… Read more »
I’m glad your situation worked out for you. We had the exact opposite problem in Florida. Our son was removed from a Christian pre-school because they were not “required” to manage his diabetes. They refused to do so by not allowing any administrator or teacher check his blood sugar and to refuse for us to leave any medication (insulin/glucagon) in the building. I had to go down to the school 3x a day (is was only a 4 hr day) to manage his care myself, and after a week, they asked us to pull him out into the hall to… Read more »
Our daughter was diagnosed July 4th 2014, she started kindergarten this year in a public school. The school has 2 other OLDER type 1 students, who have had it for 2 years and are able to care for themselves with minimal or no supervision. 2 of the kindergarten teachers this year are new teachers, so we made the financially painful decision to keep only one parent employed and have the other parent at school ALL day EVERY day to oversee her care. We have no regrets about making this decision, we regret that it had to come down to making… Read more »