By Samantha West
The doctor’s appointment was supposed to be like any other 5-year-old check-up.
But Bruce Jens wasn’t like other children his age. He was having meltdowns at daycare regularly; his parents Jessaca and Stephen didn’t know why. He wasn’t doing well in his early education program; they didn’t know why.
As she would with any other patient, the nurse covered Bruce’s left eye to test his right as part of the vision screening. Suddenly, he went ballistic — screaming, hyperventilating, kicking, hitting. They didn’t know why.
The nurse and doctor brushed the incident aside at that appointment, but Jessaca couldn’t shake the feeling that something was wrong.
She took Bruce to an optometrist. Initial tests showed his right eye was seeing at a prescription of -13, the highest prescription the machine measures.
Bruce had been completely blind in his right eye for his entire life. When the nurse covered his left eye that day at the doctor appointment, it was as if Bruce had been blindfolded. His whole world had went dark and the adults in the room had no idea.
How could they have known? What did this mean for Bruce, for their family?
“They told us you’re going to need to plan right now for him to never drive a car or live very independently. The hope is that he will, but you need to plan now for that,” Jessaca, an Eau Claire resident, recalled in late October, two years later. “When you’re told that your 5-year-old is never going to be independent, that’s kind of a devastating blow.”
Since that initial discovery and a subsequent eye surgery that gave him sight in his right eye, Bruce was also diagnosed with autism. The road has been anything but smooth for the Jens family, as they navigate what is educationally best for their son.
“We’ve struggled ever since he started in the school system here (in Eau Claire),” said Jessaca, who is herself a non-traditional student studying special education at the University of Wisconsin-Eau Claire. “From day one.”
The Jens family isn’t alone. According to 2010 U.S. Census data, nearly one in five — about 56.7 million people — has some sort of disability. According to the Wisconsin Department of Instruction, of the total 867,137 students in the state public school system, about 120,864 students, or 13.9 percent, are served in special education under the Individuals with Disabilities Act (IDEA) as of the 2015-16 school year.
IDEA is the federal law guaranteeing equal quality of education for students with disabilities.
On par with national data, of the 11,300 students within the Eau Claire Area School District, roughly 1,500 receive special education services — about 13 percent.
The parents of these children across the nation face many obstacles as they work to ensure their child is getting the education he or she deserves, such as issues in national policy, a lack of funding and a lack of school-teacher communication. Educators agree there is work to be done, but ultimately do whatever they can to meet these children and their parent’s needs.
On a national scale: Betsy DeVos
As the mother of an 18-year-old who has an intellectual disability and is on the autism spectrum, Lisa Pugh said she knows what quality education for a student with disabilities looks like.
She also knows what less than quality looks like – Pugh recalls countless “hard-fought battles,” including selling their home and relocating to a better school district, in order to get her daughter the education Pugh believes she deserves.
Pugh’s experience inspired her to become an education advocate for students with disabilities across the state and the country. She currently works as state director of The Arc Wisconsin, an advocacy organization based in Stoughton, Wisconsin that supports people with intellectual and developmental disabilities. Pugh also spent a year in Washington, D.C., as the Joseph P. Kennedy fellow, advocating for people with intellectual and developmental disabilities in Congress and at the Department of Education, under President Barack Obama’s Secretary of Education Arne Duncan.
When Betsy DeVos was appointed U.S. secretary of education in February 2017, Pugh said her reaction, along with fellow parents of children with disabilities and advocates was that of “concern.”
Not only is DeVos notorious among education circles for her support of school choice and voucher programs, but she later admitted she “may have been confused” during her confirmation hearings that IDEA is a federally recognized law, despite it being arguably the most landmark legislation for people with disabilities in the U.S.
“As a family member, I know kind of from the inside out what it really takes for a school to be able to provide a quality education for a student with a disability. It not only takes a commitment to funding, but it also takes a commitment to training and quality and standards for teachers and for what’s expected of instruction,” Pugh said. “And the philosophy from Secretary DeVos is that a lot of those protections and standards aren’t necessary.”
Though DeVos later released a statement reassuring Americans that she knows about IDEA and advocates for better and more educational opportunities for those with disabilities, her support for voucher programs caused lingering concern. Voucher programs often require that families and students give up the rights guaranteed as part of IDEA legislation.
“Her comments about IDEA were extremely concerning because they showed a lack of awareness of the type of resources that our schools need, our families need, that children need in order to be successful,” Pugh said.
‘A loophole’ in the system
Through her struggles trying to ensure that her son receives a quality education, Jessaca understands all too well how difficult the transitions from private to public school can be.
When district officials and teachers suggested moving Bruce up a grade level, having him skip kindergarten, they knew that wouldn’t work.
He had been academically successful at Concordia Lutheran Preschool, but had to switch schools as they don’t offer further than preschool.
“We said, ‘Wait a second, you’re going to take a child that’s got severe social deficits and make it wider by raising him up a grade level, and you’re skipping all the foundational skills for school,’” she recalled. “And their answer was ‘Well, he’ll be with older kids so he’ll want to follow them.’”
Instead of following what the school district decided, they “found a loophole.”
Unsure of whether the school would be a good fit, Bruce’s parents transferred him to Immaculate Conception Elementary. If Bruce were to transfer back, he would have to remain in the grade level he came from, allowing the family to avoid district efforts to place him with older peers.
Jessaca and her husband had high hopes their son would thrive in his new setting. But Bruce didn’t have enough educational support in that setting, as private schools are not mandated by IDEA to provide those services, including an Individualized Education Program (IEP).
An IEP is a legal document created by a committee of parents, teachers and district officials that establishes a child’s learning needs, how the school will accommodate them and how progress will be measured.
Because Bruce wasn’t getting the support he needed, his parents transferred him to Robbins Elementary after a few months. Still, he couldn’t get the support he needed without an IEP.
“There was nothing in place to get him special education services right away, even though it was definitely a need,” Jessaca recalled.
This is a “dance” that Chris Hambuch-Boyle, Eau Claire school board president, is all too familiar with.
“At times because of funding, or where we sit, we don’t fit their needs either right away,” said Hambuch-Boyle, who worked in early childhood special education for 30-plus years in the district before joining the board.
Now Bruce, a 7-year-old first-grader, attends Robbins Elementary twice a week for an hour-and-a-half, and he works one on one with a special education teacher due to past behavioral issues. Still, Jessaca doesn’t feel this placement is quite right.
“Full inclusion is really great, but there’s some students who need a little more than that,” Jessaca said. “And my son is one of those. He currently can’t function in a gen ed (general education) classroom. … I can’t tell you the answer, but I can tell you that my son needs more.”
Jessaca agreed promoting a system in which students aren’t guaranteed the right to an IEP in private schools is not ideal.
“It concerns me,” she said. “It’s good to have more options, but why can’t public schools be a good option?”
Although Jessaca ultimately switched her son back to public school, she still has concerns.
They don’t stem only from the experiences her son has had, but her experiences as a Memorial High School graduate who received special education services. She was diagnosed with ADHD in her youth, and it was later discovered she is also partially deaf and has a processing disorder.
“I see a lot of similarities between things happening with my son and when I was in the system 20 years ago,” Jessaca said.
Many of the issues the district faces currently, Jessaca believes, have to do with budget cuts during the last decade.
“Not a whole lot has changed, and I would like to see some progression toward supporting my son … It’s not just our district, it’s districts as a whole, I feel like all across Wisconsin they’re having to cut corners,” she said, noting many of those reductions have been made to special education and arts programs. “There aren’t a lot of options, and administrators are trying to make it work.”
Hambuch-Boyle said parents’ feelings regarding the budget aren’t a surprise.
Special education programs in the Eau Claire school district and others across Wisconsin have not received any substantial increase in funding since at least 2011, Hambuch-Boyle said, and the growing emphasis on voucher programs has also pulled from public school funding.
“You could see where funding has not kept up,” Hambuch-Boyle said.
What is “sad” to Hambuch-Boyle, she said, is the complexity of school funding that doesn’t allow community members to give their input into allocation decisions.
“The complexity of funding complicates communicating with our community,” Hambuch-Boyle said. “I think it’s nice that our community trusts us as a board to do that (create a budget). I want every person in the community to understand, but that involves time that people just don’t have.”
Eau Claire schools Superintendent Mary Ann Hardebeck said budget cutbacks have impacted all areas, but administrators and educators are focused on meeting special education students’ needs as determined by their IEPs.
“With all children, it all begins with the relationship between the student and the teacher,” Hardebeck said. “That IEP process provides, for want of a better word, a forum for people to come together and collaborate around meeting the needs of students.”
But some parents wonder, is a single IEP meeting once a year enough parent-teacher-district communication?
Beth Ivankovic, an Eau Claire resident whose 16-year-old son has cerebral palsy, said she’s never wanted to be “that parent” — the parent who is constantly asking questions or questioning a teacher or the school district’s methods.
But she’s had to be.
“I just think it’s the nature of the beast. You do have to complain as a parent,” Ivankovic said.
Although her son has “wonderful teachers and wonderful support staff,” she said meeting once a year with his teachers to create an IEP is not always enough. Sometimes Ivankovic said she even finds herself struggling to keep up with his changing needs day to day.
“How do you best balance his rights and his needs? It changes,” Ivankovic said. “… A lot of times teachers and staff will say ‘Oh, we’ll talk about that in the IEP’ and I always say to them ‘You know, that’s a legal meeting and it’s not a great place to have a conversation.’ ”
Like Ivankovic, Jessaca understands that her son’s teachers and administrators are well-intended. But it’s still an issue.
“I don’t think it’s lack of caring or lack of heart, it’s lack of resources and a lack of time,” Jessaca said. “… But sometimes that heart isn’t enough.”
In the case that a parent feels their child’s IEP no longer suits his or her needs, Hardebeck said “there is a process for that.”
Mandy Van Vleet, director of special education at Eau Claire schools, did not respond to multiple efforts for comment.
A parental community
In May, a group of parents including Ivankovic took matters of communication into their own hands, creating the school district’s brand new Special Education Parent-Teacher Association (SEPTA).
“We just want ways to communicate and talk that’s not in a legally binding meeting or room,” Ivankovic, a member of the organizing committee, said. “It’s a way to improve communication and understanding of where the schools are coming from and where parents are coming from and really just improve the community.”
At the group’s monthly meetings, parents, teachers, staff and administrators converge to listen to a local official speak about a hot-button topic in special education, address other district concerns, ask questions of the officials. At the end of the meeting, the parents break into small groups based on their child’s age to discuss common concerns and experiences.
Hardebeck said forming this group has been long coming in the district.
“I think that parents and the district office have long wanted a way to communicate about special education needs and SEPTA provides that for them,” Hardebeck said, adding that the group has also served as an “advisory group” for the special education department.
For parents like Ivankovic and Jessaca, who is more loosely involved, the organization creates a community across parents of children with special needs — something that’s not easy to come by.
Jessaca said she’s made friendships with parents across the school district, and now they text and call one another to ask advice, let some steam off and support one another.
“Even though our children are all very different with very different disabilities,” Jessaca said, “it at least gives some of that emotional support.”
This story was originally published in the Eau Claire Leader-Telegram.