Parents share struggles with special education

Barriers to services and a lack of voice in decisions are among parents’ complaints about special education in Iowa City schools.

Heidi Pierce and Megan Schwalm said parents, including themselves, have faced barriers in recent years to accessing needed services for their children. They said parents are not consistently included in meetings to talk about those services — an area the Iowa Department of Education recently investigated in the Iowa City Community School District.

Both mothers said they have concerns with district leaders’ approach to special education.

Schwalm said she faced a number of concerns while coordinating an education plan for her 5-year-old son, Maddox.

She said her family suffered financial burdens trying to access recommended services and said Maddox’s negative behaviors increased.

“He’s not getting the services that he needs,” Schwalm said.

As part of its investigation, the department of education cited the district’s special education program for noncompliance with the Individuals with Disabilities Education Act. The citations dealt with education plans, called individualized education programs or IEPs, that are unique to each student in special education.

Federal law requires schools and area education agencies to include parents in decision-making meetings about IEPs.

Officials during their investigation found issues in more than 150 IEPs before and during an on-site visit in May.

The visit revealed that parents were excluded from education plan meetings and raised concerns about decisions — which services children receive, how long they last and where they take place — being predetermined.

District to address citations 

Special Services Director Carmen Dixon said in an email that the district will follow all recommendations and mandates that resulted from the investigation, noting that the process is already underway.

The department is requiring the district to take corrective actions, including professional development and procedural changes for all levels of staff. A state-assigned adviser will work with the district on correcting noncompliant areas.

Dixon said she is committed to partnering with families and making sure students have access to a free, appropriate public education.

“The district appreciates the Department of Education’s support and guidance,” Dixon said.

Staci Hupp, a spokeswoman for the department, said in an email that actions the district were cited for had the potential to leave special-education students’ needs unmet, although the department did not find examples of unmet needs during its investigation.

However, she said the citations were substantial.

The concerns included education plans missing functional behavioral assessments, which provide steps for students to reduce negative behaviors and avoid restrictive procedures, such as placement in time-out rooms.

Hupp said such omissions could lead to more frequent usage of time-out rooms, although evidence of this was not apparent during the investigation.

“The nature of the citations observed were, without a doubt, impacting family participating in decision-making and student service delivery,” she said.

During a recent school board meeting, ICCSD Superintendent Stephen Murley said special education is “a very complicated, technical and compliance-based process,” and said rules concerning education plans recently became more complex.

“Our staff are working hard to make sure that they’re following the mandates that are included in both federal and state law to ensure that that paperwork is done properly,” he said.

Advocating for families

Pierce, a psychology professor, began advocating a few years ago for Iowa City families seeking help with special education.

She said she helped roughly 20 families, many low-income or new to special education, in part by sitting in on meetings for their children’s special education plans.

“I started out just with some friends that I knew. I go to a parents’ support group for parents of children with special needs, and I met some people there who were having trouble getting IEPs and appropriate IEPs,” Pierce said. “I started going to the meetings and noting when it seemed like the parent was not being heard and their information was not being considered.”

Pierce also provides behavioral health intervention services to families. She is a children’s mental health care consultant who is involved with autism and mental health groups.

Pierce said some families have not been notified about meetings to discuss their children’s services and faced last-minute meeting cancellations.

She said some families also had trouble accessing therapies, including occupational and music therapy, and one family had concerns about an unaddressed goal in their child’s special education plan.

She noted parents also had concerns with the Grant Wood Area Education Agency, which oversees the district’s special education program.

Dixon said teachers are working hard to provide timely meeting notices to parents. She said staff sometimes called or emailed parents about meetings but forgot to complete a meeting notice form on time. The district reviewed these plans to verify that the parents did, in fact, participate in the meetings, she said.

“If concerns had been brought to the district by parents about participation, we would have addressed them immediately. I do believe we involve all our families in special education decisions; everyone is considered an important member of the IEP team,” she said.

Pierce said she thinks district teachers are devoted to helping special-education students.

However, she said she wants to see “top down” changes to the special education program and a system put in place for parents to provide anonymous input on their experiences with special education.

“It shouldn’t have to be hard. It shouldn’t have to be stressful. We should go in and feel like we’re a team,” she said.

Seeking services for Maddox

Schwalm said when she sought an extra year of preschool for Maddox, a compassionate boy who loves trucks, the option was never on the table.

She said a therapist recommended the accommodation for him because of his diagnoses: autism, obsessive-compulsive disorder, anxiety, attention-deficit and hyperactivity disorder, and disruptive behavior disorder.

However, she said district officials would not consider the option during Maddox’s IEP meetings.

Dixon said she cannot comment on individual student situations because their records are confidential.

Schwalm said her struggles seem to align with the recent citations.

“It was very clear to me, and the folks that I brought to meetings with me, that when we got in there, decisions had already been made about what services we were going to be allowed to access for my child,” she said.

Schwalm said her son’s special-education team has also met without her.

She said during one meeting, district officials halted the discussion and reconvened in another room without her. When the team returned, they offered a decision about her son’s services, she said.

Schwalm said parents of children with special needs often fight exhausting battles for services, which can impact their financial situations and parents’ work schedules.

“For me, the entire year last year went like that,” Schwalm said.

Seeking help for gifted children with disabilities

Pierce also sought special education for her own children, who are intellectually gifted and have disabilities.

Ela, 9, an aspiring teacher, was diagnosed with autism, generalized anxiety disorder, and attention deficit and hyperactivity disorder.

Ben, 7, who loves chess, was diagnosed with generalized anxiety disorder and attention deficit and hyperactivity disorder.

Both children attend Shimek Elementary.

Pierce said despite letters from various doctors recommending special education for Ben and Ela, district and Grant Wood Area Education Agency officials repeatedly told her they were ineligible. She said officials told her they could not provide the recommended services to address their disorders and talents.

“I was just told there was no way we could ever do all of this, instead of ‘let’s figure out how this can happen,’ “she said.

Dixon said eligibility for special education is determined based on students’ disabilities and state criteria. She said the Grant Wood Area Education Agency is responsible for carrying out initial eligibility procedures, and the district works with the agency after a child is identified as a possible candidate.

Pierce said Ela now attends therapy seven days a week, although she could be accessing some services during the school day. She said this solution has helped, but is expensive and taxing for both Ela and Ben, who often sits in the waiting room.

Pierce said other families with limited access to transportation could not easily find a workaround the way her family did.

“There are families who don’t have a car. … How are they going to drive their kids back and forth to therapy? It is really a human rights issue,” she said.

Reach Holly Hines at or at 319-887-5414 and follow her on Twitter: @HollyJHines.