116 3rd St SE
Cedar Rapids, Iowa 52401
‘They never gave up on her’
Bills test the fate of a vital link that Iowa’s area education agencies provide to families and schools for inclusive learning
Feb. 19, 2024 5:00 am, Updated: Feb. 19, 2024 8:11 am
CEDAR RAPIDS — Five-year-old Gwendolyn Clouse was not expected to survive past her first birthday.
When she was 4 months old, she was diagnosed with a rare genetic condition called Zellweger Spectrum Disorder, leaving her deaf and blind and with limited mobility.
It was a devastating diagnosis, said her mother, Natalie Clouse. The doctors sent the family home, saying there was nothing they could do for her daughter.
“That period of time was such a blur. I don’t even know how, but all of a sudden I was contacted by the (area education agency). They sent a speech therapist, an occupational therapist and a physical therapist and showed me how to communicate with my daughter,” Clouse said.
When experts from the AEA showed up at the Clouse’s house, she said she didn’t understand going through the effort of beginning to teach Gwendolyn how to sit upright and communicate, given her life expectancy. She wanted to love her baby as much as possible in her short time on Earth.
Almost six years later, Clouse celebrates the progress Gwendolyn has made. She attributes her daughter’s success to the many professionals from Grant Wood Area Education Agency who have given Gwendolyn so much attention to ensure she has the best quality of life possible.
"They never treated her like she was a lost cause, a little girl who was going to die and wasn’t worth the effort. Every single person who worked with her treated her like a person. They never gave up on her,” Clouse said.
But Clouse — and many families and educators — are worried about the impact two bills progressing through the Iowa Legislature could have on the way area education agencies serve students with special needs.
Both proposals — House Study Bill 713 and Senate Study Bill 3073 — are based on the urgings of Republican Gov. Kim Reynolds, who argues Iowa’s AEAs have become too bloated and too ineffective in raising the academic performance of students with disabilities. Meanwhile, she says, the state is spending more than other states do in serving them.
A bill she introduced has been reinterpreted in each chamber, with the Senate version more closely aligning with her proposal for a major overhaul. While the House version envisions a more modest makeover, both would change the way AEAs are funded, set rules for what services they could provide and create oversight within Reynolds’ administration.
Assisted technology and special education
At Gwendolyn’s home and school, she relies on dozens of assisted devices for sitting and standing, tactile toys that help her learn and other tools for communication.
Grant Wood AEA speech pathologist Jen Kaiser created a board for Gwendolyn to expand her ability to communicate. So far, she can communicate if she wants “more” or if she’s “all done” by finding the object on the board that corresponds with what she wants to convey.
Assisted technology like mobility aids, screen reading software and speech recognition software — while used to provide special education services to children — is purchased through the media and technology budget and used by occupational therapists, physical therapists, speech therapists and others serving students.
Grant Wood AEA spokeswoman Renee Nelson said the Senate version of the bill would reduce this funding to the AEAs by 60 percent. The House version suggests that starting July 1, 2025, school districts — not the AEAs — would receive all of the media and technology funding and could chose to contract through any AEA or with another entity for these media and technology services.
Under either scenario, an AEA would have to prioritize the collections it would continue to maintain because of the unpredictable nature of the funds, Nelson wrote in an email to The Gazette.
“It’s hard to fully anticipate the impact of this reduction, but we know either bill could challenge our AEA to have the proper equipment available on a regular basis or to keep up with advancements and new technologies,” Nelson said.
“For example, think of how voice-to-text technologies have advanced in the past several years. This is one example of a resource that would need to be updated regularly to ensure students have access to the tools they need to help them succeed. We’re also concerned that children who use resources in these collections may have longer wait times for materials and resources.”
During the 2022-2023 school year, there were 10,174 items circulated by Grant Wood AEA staff to be used to support students. Grant Wood AEA has more than $600,000 worth of equipment used by staff with students and teachers by physical therapists, occupational therapists, speech language pathologists, social workers, school psychologists, early childhood staff, audiologists, autism consultants, content consultants, special education consultants and more.
Inclusion in the classroom
Audrey White, an occupational therapist at Grant Wood AEA, said it would be “detrimental” if AEAs were no longer providing these devices -- and the expertise on how to use them in the classroom and at home. The services go beyond learning by being about inclusion and enabling students to be active participants in classrooms.
Switch-adapted toys allow kids with limited mobility the opportunity to interact with their peers. For example, a red toy car about the size of a shoe box can be operated differently depending on a child’s ability. Toys that play music, light up, move around and vibrate can be operated by touch or by chin switches or foot switches, for example.
One device called a PowerLink can give students with limited mobility access to classroom jobs like sharpening pencils or turning on the lights. Devices can be plugged into the PowerLink, adapting them to be operated by touch or by chin or foot switches.
There also are lower-tech tools like fabric light filters that magnetize to the ceiling to partially block fluorescent lights in classrooms to help students regulate brightness and focus on learning. There are scissors for students who are left-handed, and scissors for students with fine motor skill deficits. There are LegiLiners — rolling stamps that enable teachers to add lines to work sheets to help students in writing and math.
School districts can try out this equipment for six weeks or more, exploring what’s most useful to aid in a student’s learning. When they find the right device, the school district can purchase it for the classroom. This saves schools money by taking the guesswork out of what devices will best assist each student in learning.
Families also can try devices at home and purchase them if they find they’re a good fit for their child. If devices they have at home break or need to be replaced because the child has outgrown them, the AEA is there to fill the gap in services, White said.
Kelli Robertson, speech-language pathologist and lead for assistive technology at Grant Wood AEA, said it can be scary for families when their children receive a new diagnosis. The AEA experts are there to provide options to support every child’s learning, she said.
Robertson also provides coaching and professional development to teachers on how to use these devices, reaching beyond helping individual students and equipping educators with knowledge to serve students for years to come, she said.
“I worry a line will be drawn where I can help,” Robertson said of the proposals.
When Reston Sutton, 6, a first-grader in the Center Point-Urbana Community School District, was diagnosed with cerebral palsy, Grant Wood AEA was there to provide occupational therapy, physical therapy and speech pathology services.
Cerebral palsy can affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood.
Grant Wood AEA helps ensure Reston has supportive seating in class and for eating at the lunch table and for bathroom access. One of Reston’s goals this year was to be able to carry his lunch tray by himself — something he accomplished with a smile.
His mother, Rachel Sutton, said his diagnosis when he was almost 2 was “life changing” for the family. “You have to alter a lot of things about your home, your car, the way you get around. Grant Wood was so helpful,” she said.
Grant Wood AEA experts helped Sutton rearrange the furniture at her home so it was easier for Reston to get around. They had adaptive games on hand to help Reston develop fine motor skills, and work sheets to help with his vision.
“Our children need these services,” Sutton said.
‘Strong faith’ keeps Gwendolyn’s family going
Gwendolyn’s family first began receiving services when she was a baby through Early ACCESS, Iowa’s early intervention system for infants and toddlers under 3 who are not developing as expected or who have a medical condition that can delay development.
This program is delivered by the AEAs, years before the child is of school age. Reynolds wrote in a Jan. 19 “open letter to Iowans” that the program would continue despite her other suggested changes.
There is no treatment for Zellweger Spectrum Disorder, but the Clouse family has learned how to manage Gwendolyn’s symptoms.
“It’s by the grace of God she’s still here,” said her mother.
She has cochlear implants to help her hear. Seizures — which are a symptom of Zellweger Syndrome — are treated with diet and medication. Liver disease, also a symptom, causes ulcer-like symptoms in her stomach and esophagus. She takes medication to manage the pain.
Gwendolyn eats through a gastrostomy tube inserted through her belly to bring nutrition directly into her stomach. She sees a palliative care doctor for neuro-irritability and an ear, nose and throat specialist for a hole in her cleft palate.
At home, Gwendolyn uses a suction machine so she doesn’t aspirate on her own saliva, which can get into her lungs and cause pneumonia.
On days when she’s feeling better, she wakes up and sings to herself. “She just smiles and laughs. It’s absolutely adorable,” Clouse said.
Her 2-year-old brother, Gideon, knows Gwendolyn likes to be rhythmically tapped on the chest. She finds it soothing, Clouse said. She knows her family members by the feel of their hands.
Each therapist from Grant Wood AEA greets her differently with a tactile symbol — letting Gwendolyn feel a name tag or bracelets, for example — so she knows who it is that is there to see her that day.
Gwendolyn said the word “mom” once. “It was perhaps the coolest day,” Clouse said.
“We have a really strong faith,” she said. “I know God already has her story written. He’s going to keep her here until she’s done what he wants her to do on this Earth, and then he’s going to call her home. He knows when that day is, and until then I’m going to love the heck out of her. I know she’s here for a purpose, and I’m blessed to be along for the ride.”
Comments: (319) 398-8411; grace.king@thegazette.com
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