Hydrocephalus Mom Fights to Change Pennsylvania Truancy Law

August 18, 2016

Hello, my name is Ashley Mantheiy. I am a proud mother to two hydro warriors, Drake and Benjamin. Combined they have endured thirty-seven operations in their battle with Hydrocephalus. We had our struggles early on in our eldest Drake’s medical obstacles, but currently we have been struggling to get our youngest son, Benjamin, stabilized from the chronic headaches and pain.

I truly never imagined that once the kids entered the educational portion of their life that we could be faced with a legal battle. This is where our story begins and how we need your support. Our family lives in Pennsylvania, and the state compulsory attendance law only allows ten cumulative absences before you are labeled truant. There are no medical exemptions for chronic illness.

Since the beginning of our youngest son, Benjamin’s, second grade year, we informed our school district about Benjamin’s on-going medical struggles. We also provided multiple letters from Benjamin’s specialists to validate his medical challenges. In March 2016, my husband Richard and I were informed by our school district that they were going to send us a truancy letter because of Benjamin’s on-going absences. They were looking at ten days when Benjamin went to school but was sent home by the school nurse because of headaches. A formal letter arrived and it read, “Moving forward, any lawful or unlawful absences you may face prosecution.” We were also informed that we needed to document every absence from that point forward. For example, if Ben was out of school for a headache, we needed to take him to his neurologist or neurosurgeon.

From this piece of paper my crusade to change truancy legislation emerged. As adults in the workplace we are protected after one year of full-time employment by the Family Medical Leave Act. The Family Medical Leave Act protects an employee for a twelve week period for their physician-approved medical diagnosis. As I began to research truancy laws in Pennsylvania, I realized that chronically ill children are not protected from being prosecuted. So, looking at how FMLA protects myself in my work place, we realized we needed to develop legislation for chronically ill children in the same manner. The Student Medical Leave Act emerged.

The Student Medical Leave Act would serve in the same capacity as the Family Medical Leave Act but for chronically ill children. The first part of the legislation requires a chronic illness wavier be filled out by the child’s specialist. It will go into detail about the child’s condition and the physician would be the determining factor in the number of allowed absences. This waiver would also make the parents and child exempt from being prosecuted for truancy. The next step would be a meeting with the school district to discuss the waiver and how the IEP would be written to address the medical situation with regards to continued educational instruction with consideration to absences. There are a lot of ways for your child to still keep up and meet their educational goals. Often these are not addressed in an IEP because the team is focused on the time the child is in school and receiving instruction and, therefore, not considering the time in and out of school and how that may impact learning and receiving and/or completing assignments.

In essence, the Student Medical Leave Act will serve as protection for chronically ill children for their medical diagnosis by providing families security that they will not need to fight school districts against truancy charges for their child as well as reminding IEP teams to take into consideration absences when looking at instructional planning for the year. In Pennsylvania, if you can take your child out of school for an educational trip for ten days and those days do not count against attendance laws, then you should be able to have a brain condition and not fear prosecution or be pressured to withdrawal your child from public school to homeschool them.

We need your help to push for changes to truancy laws in Pennsylvania. Pennsylvania may just be our first step. There are currently four other states in the U.S. that have truancy waivers in place. We want to make sure all of our kids are protected from truancy prosecution so that we, as parents, can focus on their health and education without fear. What we accomplish in Pennsylvania with the Student Medical Leave Act may serve as model legislation in other states. We are working with key legislators in Pennsylvania, the Hydrocephalus Association, and medical institutions to make the necessary change here. Follow our story and support us as we make changes in Pennsylvania…and then see where we need to act next. This is not just for children with Hydrocephalus; it’s for all children who are suffering from a chronic illness and are being prosecuted for being absent too often and pressured to be homeschooled. We are just one family fighting for something better, but united we can change the course for the nation.

If you have experienced something similar in your journey, please let us know! Email rally@hydroassoc.org.