Children Too Sick to Go to School: Families Fight for Home Education

Before the birth of Michaela Hillyard, born in 2020, doctors had shared a very sad prognosis with her family. During an ultrasound performed at 18 weeks in the womb, it was detected that the baby's brain had not properly divided due to a missing part of her 13th chromosome. How this rare condition would affect their daughter's development would only become clear after she was born. Doctors warned the family to be prepared for the worst and even advised them not to buy a stroller. However, the family overcame these challenges, and Michaela, now six years old, managed to hold on to life.

Michaela has multiple disabilities and severe health problems; she is fed through a feeding tube, cannot speak, and cannot walk yet. Because her heart, lungs, and kidneys are also negatively affected by her condition, her immune system is extremely weak. Her doctors state that she is too vulnerable to physically go to an elementary school environment. Along with all these medical challenges, it turns out that Michaela is unable to fully benefit from the home education right guaranteed by the Rhode Island state for students who cannot attend school for medical reasons. Her family feels that she is not getting the education she deserves and is being left behind.

The Tiverton school district provides Michaela with some services such as physical therapy and speech and language therapy. However, the weekly five-hour full lesson program, which the state Department of Education mandates for special education students receiving home instruction unless otherwise specified, was never fulfilled. Currently, a retired special education teacher comes to the house for only two hours a week to work with the girl. Michaela's mother, Abaigeal Hillyard, believes that if her daughter were to spend more time with a teacher, she could learn to communicate using American Sign Language (ASL). Denying the child access to communication and language acquisition is described as an unacceptable situation by the mother, who is a Navy Commander.

Tiverton School District Superintendent Chris Haskins stated that he cannot comment on individual students for legal reasons, but that their district is committed to educating students who receive home instruction. Haskins acknowledged that finding and retaining qualified staff sometimes creates difficulties, as it does in many school districts. Experts point out that this problem is not unique to Tiverton; the education system across the US is already overloaded and struggles to adequately serve various children with special needs. Nationwide, finding enough teachers to visit students' homes has become an increasingly difficult task.

Former special education teacher Deanna Conley, who took action to solve this systemic problem, is working with state Senator Lou DiPalma to investigate the families of children who cannot go to school for extended periods due to medical reasons. According to official data, while there were 162 children receiving education at home or in a hospital in the state during the last academic year, Conley says these figures barely reflect the reality. Conley, who stated that many families are forced to pull their children out of the system and educate them on their own because school districts fail to provide the necessary services or out of fear of being taken to court due to absences, emphasized that this situation is a much bigger problem than we are even aware of.