So attending this program was good for Marissa and good for her family. School was a place where she could learn, have fun and play with other children.
But everything changed after Marissa was diagnosed with type 1 diabetes.
After learning about Marissa’s diagnosis, the school district said that she could not come back to the Head Start program. The family was told that, since there was nobody to provide diabetes care throughout the school day, the only way Marissa could attend was if they hired and paid for a nurse themselves. But that was simply not possible. So–just like that–Marissa was out of school and stuck at home.
For the next few months, Marissa’s mother, grandmother and other family members tried and tried to figure something out. They called their state representative, contacted education groups, anything to get Marissa back to school. But nobody could help them. Tired and frustrated, they thought nothing could be done.
Then a family friend suggested that they call the American Diabetes Association. They finally got the help they needed.
A Legal Advocate (a lawyer experienced with diabetes discrimination) at the Association let the family know that Marissa had legal rights. By denying her the ability to attend school, the school district had broken federal law.
The Legal Advocate referred Marissa’s case to Alan Yatvin, a Philadelphia member of the Association’s Advocacy Attorney Network. At no cost to the family, Mr. Yatvin reached out to the school district. He presented information about the law and tried to work with school officials to solve the problem. When that didn’t work, he filed a lawsuit in federal court demanding that the school district provide diabetes care for Marissa at school and allow her to return. The district then backed down and agreed to assign a full-time nurse to the school.
After almost five months, Marissa was finally back in school.
Sadly, her mother, Evelyn, died two weeks after Marissa returned to school. Although it was a hard time for the whole family, it helped them to know that Marissa was safe at school, where she belonged.
“I am disappointed that school officials didn’t understand this terrible denial of Marissa’s basic rights. But I am so happy that with the resources of the American Diabetes Association, we were able to help this sweet little girl and her wonderful family. The Association’s Legal Advocacy program made the difference.” – Alan Yatvin
The American Diabetes Association leads the effort to prevent and eliminate discrimination against people with diabetes at school, at work and in other parts of daily life. If you need help, call 1-800-DIABETES or visit http://ift.tt/1zCIiW2.
Through our nationwide Safe at School program, the Association is dedicated to making sure that all children with diabetes are medically safe at school and have the same educational opportunities as their peers. Visit our Safe at School website for information and resources.
Give the gift of fairness — donate now to help people with diabetes facing discrimination, just like Marissa:
Recently we asked our Facebook community to tell us about people who have lived long and well with diabetes – people who have lived 20, 30 or even 40 years or more with the disease. Having received a lot of great responses, we’re privileged to present these favorites on the blog this week. We’re hope you’re as inspired by these personal stories as we are!
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Age: 54 (diagnosed at 8)
Location: Fitchburg, Mass.
Soon I will mark my 46th “diaversary” with type 1 diabetes. Right now, I’m healthy and doing fairly well through a lot of both hard work and luck. With me in the photo is my son, who’s had T1D for 10 years. It truly is a long road with few and painfully short breaks—if there are any at all.
Diabetes has definitely affected my relationship with my son. It’s been difficult in some ways and great in others. He gets my support, but still, I’m a dad and I like to offer up stories like “you know in my day, we only had Tab [to help correct blood glucose lows], and we liked it, dagnamit.”
We have an advantage in having other supplies to go to if there is a problem. We also have a close relationship when complications crop up. We understand what a high or a low feels like and can empathize with one another.
I also am not all over him when there’s a high reading. Of course there’s a degree of “well, yeah, that isn’t good…” for certain behaviors. But I also know that treating abnormal blood glucose readings as something done wrong will cause kids with diabetes to hide them. You don’t yell at your kid for a temperature, so there’s no need to yell about a high glucose number.
My son’s diagnosis was a very important incentive to take care of myself and my own diabetes. I am his example now. Doctors can say almost anything, but the examples at home are the best examples to go by.
All parents of children with type 1 should realize that their kids are going to deal with their condition as their parents do. If the parents worry a lot, the kids will. If the parents don’t care, neither will the kids.
I’ve seen a lot in the last 46 years. Since I was diagnosed, the biggest improvement to diabetes management has to be the blood glucose monitor. Back in my day, it was urine testing with pills dropped into a water-urine mix. That was incredibly outdated, using information hours old and potentially very incorrect. Even against the faster insulins and the pump, knowing where you are with your blood glucose is still the most important piece of knowledge to have.
If you’re new to diabetes, know that you’re far from alone. A lot of times, that doesn’t mean much. But for every problem you’ve had, someone else has had the same situation and has (or hasn’t) dealt with it. Whether you need a word of encouragement or something more substantial, there are people there who can help you.
