Children at hemophilia conference

Education Advocacy

Teaching parents about their rights
Author: Beth Marshall

In each issue of HemAware, we take a look at how local NHF chapters are making a difference in their communities. This month we talked with Ivan Harner, executive director of the Hemophilia Foundation of Michigan.

What is a 504 program?

Section 504 is a federal law that states that schools must provide equal access to education for children with disabilities. For a kid with hemophilia, this means schools have to allow children to self-infuse, for example, and allow time to make up work if they miss classes due to bleeds or doctor’s visits.

Describe your program.

We offer sessions at our consumer conference where we educate parents about their rights under Section 504. A lot of parents aren’t aware that they have the right to insist that schools accommodate their child’s needs, so making parents aware of the law is often the most important thing.

If a parent is running into problems with a school, we explain what steps to take. For example, the first thing a parent needs is a letter from a physician stating that their child has a bleeding disorder. That’s all they have to provide to the school in order for their child to be covered. If the school is still unwilling to accommodate the student’s medical needs, we tell them to meet with the 504 coordinator in their district—every school district has one—to work out what the student’s needs are and how to accommodate them.

If the school absolutely refuses to accommodate, there is a fallback of demanding an interdisciplinary plan. This is more commonly used with kids with physical or mental disabilities, and is usually a meeting with teachers, a school social worker, the school nurse, the parents and, sometimes, the principal. This interdisciplinary team develops the educational plan for the student. But parents of children with bleeding disorders usually don’t want—or need—to do this. The needs of their child can really be met through the Section 504 program.

What are some problems that parents come up against with their school?

Allowing self-infusion is the one that seems to occur the most. Some schools won’t even give kids aspirin these days, and self-infusion requires medicine and needles, which are things a lot of schools would rather not have on their campuses. They just would rather have the child do it at home or somewhere away from the school. But they are required by law to provide space and time for a student to self-infuse. There’s also the matter of missing classes for doctor’s appointments or other medical reasons, which can come up especially if a kid has an inhibitor. The schools have to make provisions to make up time from missed classes.

How does your chapter assist ­parents?

The first thing we do is make parents aware that this law exists and protects their child. We educate the parents to be advocates for their children; we teach them the right questions to ask and the right things to say. If they meet with a lot of resistance from the school, we will sometimes call the school on their behalf, but for the most part we encourage the parents to do the advocating themselves. We have some members of our community who are school counselors, and they speak at our consumer conferences, so it works as a “train the trainer” model. Having our chapter intervene is more of a fallback position, but we will advocate for the student if it comes to that.

Do you have any other resources that you use?

If a parent gets completely stonewalled by a school, we connect them with an organization called the Student Advocacy Center of Michigan. It is a nonprofit organization that advocates on behalf of children who are being refused access to education.

[Steps for Living: Federal Legislation]

The Hemophilia Foundation of Michigan is located in Ypsilanti. To contact the foundation, call 800.482.3041.