Their children are too sick to go to school. These parents are fighting for them to get a better education at home.
TIVERTON, R.I. — When Michaela Hillyard was born in 2020, doctors said her prognosis was grim.
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Her parents were somewhat prepared for the news. Two days before Christmas the previous year, when Abaigeal Hillyardhad an ultrasound at18 weeks, she and her husband, Joshua Hillyard,learnedMichaela’s brain did not split properly in utero, a rare condition caused by a missing portion of her 13th chromosome. They wouldn’t know exactly how it would affect her development until she was born.
“We were advised … ‘Don’t get a stroller, you’re not going to be taking her home,’” AbaigealHillyard said in an interview in her living room earlier this year. “By the grace of God, we’ve had three strollers now. And she’s outgrown this one.”
But, Michaela’s disabilities are numerous: She has a feeding tube, is nonverbal, and can’t yet walk. She doesn’t have thumbs.
And at 6 years old, Michaela also can’t go to school in person, her parents said. Her heart, lungs, and kidneys are affected by her condition, and her doctors say she is too immunocompromised for the inside of an elementary school.
She’s also, her parents said, not getting the education at home that she’s entitled to under a Rhode Island requirement for students who can’t go to school for medical reasons.
While the Tiverton schools do provide some services, such as physical therapy and speech therapy, Michaela has never had the five hours a week of instruction required by the Rhode Island Department of Education for homebound special education students. The Hillyards are among multiple families who said they have had to fight to get those services, and feel their children are being left behind.
“As a parent, you get angry,” said Abaigeal Hillyard. “It’s a place that’s supposed to keep your child safe, help your child develop, invest in their education, care about them.”
She said a retired special educator currently comes to the home for two hours per week, but Michaela has never received the full five hours required. Abaigeal Hillyard believes her daughter could learn to communicate, potentially using American Sign Language, if she had more time with a teacher.
“To deny her access to communication and language is gut-wrenching to me,” said Abaigeal Hillyard, who is a Navy commander workingin human resources. Her husband stays home to manage Michaela’s vast medical needs.
Tiverton Superintendent Chris Haskins said he could not legally comment on individual children, but said the district was committed to educating homebound students.
“Like many school districts, recruiting and maintaining specialized staff can present challenges at times,” Haskins said. “When staffing needs arise, the district works diligently to ensure that qualified personnel and related service providers are available to meet students’ needs and fulfill all legal obligations.”
The challenge of educating homebound children is not unique to Tiverton. The USeducation system is alreadystretched thin and struggles to provide for children of all kinds with special needs. Homebound instruction is particularly strained, experts told the Globe. Most such placements are temporary; a student is sick with cancer, has surgery, or mental health issues that keep them out of school for weeks or months.
It can be difficult to have enough staff on hand to visit students’ homes sporadically.
“The hours are short, and when people are getting hired, they want hours and a set salary,” said Deanna Conley, a former special education teacher who now helps Rhode Island families through her business, Prosper Special Education Advocacy Services. “You can’t say, ‘Oh, I need you for two weeks,’ or ‘I might need you for two months,’ or ‘I just need you from 3 to 4 on Tuesday and Friday.’”
Conley is working on the problem with state Senator Lou DiPalma, starting by surveying parents whose children were absent for extended periods for medical reasons. Officially, the state Department of Education says there were 162 children enrolled in homebound or hospital instruction at some point this pastschool year, 34 of whom are special education students.
Conley said those numbers are woefully undercounted.
Her survey of families found what she called “reluctant homeschoolers” — parents who pulled their children out of the school system altogether after extended absences, sometimes out of fear of truancy court, or because their district wasn’t providing the services they needed.
Those students aren’t counted in the state’s numbers. Neither are students who were chronically absent for mental health issues, rather than physical health, and did not officially have their placements changed to homebound instruction.
“This is a much bigger problem than I think people are realizing,” Conley said.
One reluctant homeschooler is Danielle Fallon, who lives in Westerly with her husband and their 6-year-old son,Asher.
“I never wanted to homeschool,” Fallon said. “I had to choose between his health and safety, or public school.”
Asher, a kindergartner at Dunns Corner Elementary School, has Down syndrome, autism, epilepsy, and other medical conditions. He hasn’t been to school since February. After a series of hospitalizations earlier this year, his doctor recommended homebound instruction to allow him to recover.
But Fallon hit roadblocks. The district said it would provide “up to” five hours a week of tutoring for homebound students, according to emails reviewed by the Globe, but would not come to their home. She could either bring Asher to school after hours — which her doctor warned against because of germ risk — or do virtual tutoring, a tough task for a kindergartner.
From February to May, Asher received only two hours of virtual instruction total, in four 30-minute sessions, Fallon said. She later learned that state regulations required a minimum of five hours per week for special education students in elementary school.
“I was so focused on getting my son healthy, I just kind of trusted that the school was going to do what needed to be done,” Fallon said. She initially considered sending him back to school with a one-to-one nurse to help keep him healthy, but wanted it to be the one the family had already hired. When that wasn’t possible, she gave up.
“We pulled the plug on June 3,” Fallon said. “We sent in the letter to withdraw him.”
She has retained a lawyer, Ellen Saideman, to file a complaint with the Department of Education, alleging the district failed to provide the requiredfive hours a week of schooling.
“It’s not clear to me why they did not follow that regulation,” Fallon said. “I had to fight for the bare scraps of what he got for tutoring.”
Westerly Superintendent Mark Garceau said the district denies Fallon’s claims, but said he is legally prohibited from sharing more information due to confidentiality laws. He did not answer questions about Westerly’s homebound policies in general.
Two days after the Globe reached out to Garceau, Fallon said the district offered to provide speech, occupational, and physical therapy services to Asher, and would allow his nurse to attend. She still plans to file a complaint about the lack of homebound schooling.
Lisa Foehr, chief of teaching and learning at the Education Department, confirmed that special education students in homebound or hospital instruction must receive a minimum of five hours per week of academic instruction at the elementary level, and six hours in middle and high school. Other services such as speech and physical therapy don’t count toward the five hours.
The rules are less specific for homebound students who are not in special education. Districts must have a policy to educate students who are out of school for medical reasons, but the state does not dictate how many hours they must provide. (All of the children in this story are special education students.)
Foehr said the Education Department has not received a formal complaint about homebound education issues, but has met with Conley and DiPalma about the problems.
“It’s not completely surprising to me, given the low numbers of students we’re talking about across the state, that at an individual district level this may pose a challenge,” Foehr said. “We have a nationwide teacher shortage.”
Fear of truancy has also prompted families to leave the school system. Liz Peckham, a Tiverton mom whose 15-year-old son, George, has autism and anxiety, said he hasn’t been to school since seventh grade. He’s supposed to be a sophomore in high school.
George is smart, talkative, and charming, Peckham said, but was prone to behavioral issues that often caused a scene in school. He sometimes refused to go in. One day in middle school, when a teacher made him stop watching YouTube videos on his school-issued Chromebook, he had a “complete meltdown,” Peckham said. He threw his desk, and it wasn’t the first time.
George was suspended, Peckham said. She felt awful, but also didn’t understand why he had access to videos duringclass in the first place. George’s IEP called for a one-on-one aide, but the district did not have the staff to provide one, she said.
“As much of a gigantic loss as it is, I couldn’t send him in anymore,” Peckham said. Fearing truancy court, she pulled George out and signed up as a homeschooling parent in 2022. At the time, she said,she didn’t know that homebound instruction existed.
“I don’t want to homeschool,” Peckham said. “I don’t feel qualified to make educational choices.” Since George has an IEP, she thought she would still get some support from the district, but she said her emails often go unanswered.
“Special ed parents like me are just treading water,” Peckham said. George tested at grade level last year despite no formal schooling, and she knows he could go far. She got emotional talking about students like him.
“Just because they can’t thrive in a school setting doesn’t mean they don’t deserve to learn,” Peckham said.
It is those families Conley and DiPalma hope to help as they craft a proposal for a statewide homebound instruction program. The idea, modeled after similar programs in Maryland and Virginia, is for a centralized hub that hires full-time teachers and dispatches them to students’ homes or hospital rooms, with a goal of supporting them so they can get back to school in person.
“We’re really envisioning a program that helps keep a bridge between home and school, so that they’re not lost at sea,” Conley said.
It’s not clear how much the program would cost. It would likely require approval from Rhode Island lawmakers.
“There are children in all of our districts that are not receiving an adequate education they’re entitled to,” said DiPalma, who is chair of the Senate Finance Committee. “We need to address that.”
Abaigeal and Joshua Hillyard said they would eagerly sign upfor such a program. Their current situation causes stress and sleepless nights and sometimes drives a wedge between them.
Joshua Hillyardwants to walk away from the district, while his wife wants to keep fighting.
“Not because I don’t want her to get the services,” he said of Michaela. “But there is an active defiance on their part.”
The Hillyards do see Michaela making some strides. She’s started tilting her head to indicate “yes” and “no.” She responds well to music, and loves a modified dance party. She’s silly and laughs whenever her dad enters the room and loves when the car hits a pothole, prompting a deep belly laugh that “sounds like she smokes a pack a day,” Abaigeal Hillyard joked.
But with every improvement, there’s a setback. Michaela’s speech therapist is leaving, and they aren’t sure if Tiverton will send a replacement. The district struggled to provide one in the first place; Abaigeal Hillyard found their current speech therapist by crowdsourcing on Facebook.
“Life would be a lot easier if I didn’t have to advocate so strongly and so consistently,” Abaigeal Hillyardsaid. “Maybe I’m being silly, thinking I can make more change than I ever really could. But my purpose for staying in the fight is to try to help things be better for kids like Michaela.”
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