Your Rights, One Voice: Mason’s Story

As a parent, you want the best for your child, from health care to home life to education. Raising a child with type 1 diabetes can make the stakes higher—even when everything is going well. But how do you react when a necessary part of your child’s life keeps him from success? That’s the situation Mason Stevens’ parents found themselves in when Mason’s school refused to provide him with a 504 Plan.

Some background: 504 Plans outline medical care and other accommodations that students with disabilities might need in the school setting. These plans ensure that students covered receive appropriate accommodations while at school, as well as equal treatment and access to school-related programs, trips and extracurricular activities. Under federal law, diabetes meets the definition of a disability, so public school students who live with diabetes, like Mason, should have a 504 Plan in place.

Nicole and Michael Stevens of Lancaster, Pennsylvania, approached Donegal Primary School to request a 504 Plan for Mason, who uses an insulin pump and a continuous glucose monitor, when he was in kindergarten. Rather than providing a 504 Plan, the school developed an Individualized Health Plan (IHP), which didn’t outline parameters or arrange extra time for education support for Mason based on his medical disability.

“It appeared the school wasn’t educated on how diabetes impacts a student’s ability to focus and learn, or how quickly blood sugar levels can change in a five-year-old,” Nicole said. “When we asked for a 504 Plan, we were told the school did not recognize diabetes as a disability and he did not qualify.”

Mason’s parents had also secured a private duty nurse to monitor Mason while at school to make sure his blood glucose levels remained stable. Unfortunately, the school began to rely a bit too much on the nurse rather than providing the extra support he truly needed.

Having only an IHP kept Mason from educational success on multiple occasions. For example, at one point, high blood glucose levels prevented Mason from being able to concentrate during a math test—to the point that he couldn’t complete it. This resulted in his teacher marking each incomplete answer as wrong. If Mason had had a 504 Plan in place, he potentially could have waited to take the test until his blood glucose levels came down.

This negative impact was even noted by Mason’s teacher. Report cards showed progress, but the teacher said that Mason’s challenges were prohibiting him from reaching his full educational potential.

Nicole and Michael knew that Mason needed more than an IHP, but the school stated that Pennsylvania state law required him to undergo a psychological evaluation to qualify for a 504 Plan. Nicole had read that this wasn’t the case (per federal law), and she turned to our Legal Advocacy program for help.

“At first, we trusted the school to follow the federal and state laws. So initially, we accepted the original plan of the IHP. However, as Mason progressed in kindergarten and we asked for amendments, we started to see that the IHP was not enough to ensure his education and Mason’s physical health was not being managed appropriately,” Nicole noted.

Our Legal Advocacy department confirmed that Mason was eligible for a 504 Plan and connected Nicole and Michael with Philadelphia attorney Alan L. Yatvin, who serves on our national Board of Directors and has significant experience with legal issues involving students with diabetes. With support from our Legal Advocacy team, Yatvin worked with the Stevens family as they negotiated a 504 Plan, making sure the school recognized its necessity—not an easy process.

“The school did not ‘embrace’ the 504 Plan,” Nicole noted. “The initial planning was awkward and uncomfortable.”

Finally, at the end of Mason’s kindergarten year, a 504 Plan was signed and took effect. With the plan in place, the Stevens family continues to work with the school to make sure Mason’s needs are being met.

According to Nicole, “Mason is [now] in first grade and is doing well—he likes school and excels in academics. The 504 Plan was a huge step in the right direction for us.”

There is still work to be done, such as a need for additional training and resources—for example, the Stevens family still relies on the private duty nurse to assist during the school day. But Nicole believes progress is being made: “We see small improvements with new staff at the school, and his teacher has been a great support. As Mason grows and can manage more on his own, we feel his needs can be fully met by the school in a few years.”

Thanks to the work of our Legal Advocacy team and Alan Yatvin, Mason’s family now hopes that he will enjoy the full, equal education experience that he deserves.

“It wasn’t until we connected with the Association’s Legal Advocacy program that we felt confident [that we had the] additional resources and staff to help us push forward to obtain what Mason was entitled to. It assured he would receive a fair and appropriate education regardless of his medical condition,” Nicole said. “Alana [our Legal Advocate] was the spearhead we needed and valued to get what our son needed and deserved as a child with diabetes.”


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 diabetes.org/gethelp.

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.

 

Originally posted here on the ADA blog.

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