Section 504 lawsuit stokes fears for families with disabilities
Shane and Jackee Austerman with their children, Isaiah and Elizabeth. Contributed photo.
Shane and Jackee Austerman’s children, Isaiah, 15, and Elizabeth, 12, were born with phenylketonuria, or PKU, a rare genetic disorder where the body is unable to produce an enzyme that breaks down the amino acid phenylalanine. Their diagnoses meant Shane and Jackee immediately became fierce advocates for protecting their children’s health.
A recent 17-state lawsuit has caused concern among families like the Austermans, who worry many of their children’s disability protections may disappear as a result.
In September 2024, Iowa Attorney General Brenna Bird signed on to Texas v. Becerra, which challenges the 2024 updates to regulations of Section 504 of the Rehabilitation Act of 1973. Former U.S. Department of Health and Human Services secretary Xavier Becerra updated the Rehabilitation Act’s regulatory language with the goal of expanding protections, aiming to keep them consistent with other disability and health-related legislation and court cases that have occurred since the law passed. The preamble of the law was updated to state that someone experiencing gender dysphoria may have a disability under Section 504.
The lawsuit Bird signed on to claims that the addition of gender dysphoria to the 2024 rule was unconstitutional.
But the situation has sparked fears among disability rights advocates that other protections guaranteed by Section 504 of the Rehabilitation Act could be threatened. The section prevents discrimination based on disability in programs that receive federal funding, such as education, public transportation and health care.
Bird defended her participation in the lawsuit in a prepared statement that claims most Section 504 protections would not be affected.
“Section 504 is an important law that gives kids with disabilities the tools they need to succeed. What the states are challenging is an illegal Biden-Harris mandate that manipulates this disabilities law to force boys into girls’ restrooms. No school or disabilities program should have to follow a transgender mandate or risk losing their federal funding,” the attorney general’s communications director Alyssa Brouillet wrote via email.
Still, advocacy groups and people with disabilities remain skeptical that all Section 504 protections are shielded from the lawsuit, and they believe it could threaten disabled people and their families.
Legal uncertainty
The lawsuit is currently suspended due to the change in administration, but Daniel Van Sant, director of disability policy at the Harkin Institute, said that doesn’t mean it’s finished.
“A pause just means that you reserve the right to continue,” he said. “To me, leaning on the pause rather than withdrawing means if this doesn’t go the way that the petitioners want, they want to be able to move forward with the lawsuit. I believe it very much is an issue until it’s either ruled on by a judge or withdrawn or dismissed.”
While Section 504 pertains to all entities receiving federal funding, it’s most commonly applied in educational settings. The 504 plans “provide accommodations and supports to access both academic and extracurricular activities” when a student is missing an activity due to a disability, according to the Iowa State Education Association.
On Feb. 19, the participating states filed a joint status report stating the “defendants continue to evaluate their position in light of the president’s recent executive order,” referring to the order “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government.”
The report also clarifies that the defendants never intended to ask the court to declare Section 504 unconstitutional, which Van Sant says “does not actually change the filing in this case.”
Iowans for Section 504, a group consisting of leaders from various Iowa organizations supporting people with disabilities, sent a letter to Bird that argued the lawsuit leaves Section 504 open to legal challenges in the future.
“You have publicly stated that Iowa joined this lawsuit to help protect Iowans with disabilities and that 504 plans for students are not in jeopardy. … While this request does not explicitly call for the revocation of Section 504, such a declaration would leave it vulnerable to future legal challenges and eventual repeal, weakening the protections that have allowed individuals with disabilities to receive an education, secure employment, and access necessary healthcare services,” the letter reads.
Van Sant echoed this sentiment, adding that the removal of Section 504 protections could jeopardize other disability legislation.
“The Americans with Disabilities Act protects people with disabilities. The Individuals with Disabilities Education Act is where we get IEP plans. I think, importantly, Section 504 came first,” he said. “The ADA specifically has language about expanding 504 protections to state and local governments. The fact that so many disability rights laws and other civil rights laws connect to it, or have it as the foundation — if 504 gets found unconstitutional, could this set up attacks against the IDEA or the ADA and other civil rights laws?”
Families worry for their children’s futures
Isaiah and Elizabeth Austerman must adhere to a lifelong specially modified diet in order to avoid consuming phenylalanine, which is found in most protein-rich foods. Were they to go off diet, the protein would build in their brains and potentially lead to brain damage, intellectual disability and issues with executive function. The diet includes a specialized formula and other medical foods that ensure essential nutrients.
Isaiah and Elizabeth qualified for early interventions through the Iowa AEA to help them reach developmental milestones. The additional support, funded through the Individuals with Disabilities Education Act, meant both children were able to access early speech services. This set them up for the success they’re now experiencing as teenagers, their parents said.
Their Mount Vernon school district provides their specially modified food and trains school nurses and lunch workers to prepare and serve their food as a result of Section 504. A loaf of their specialty bread costs $18, a cost that the Austermans say will be difficult for many PKU families to cover if schools were no longer required to supply it.
“If you don’t get access to that food and formula, you’re unsatiated. If you’re unsatiated, you start stealing that piece of regular bread that is poison to you,” Shane Austerman said.
Two of Jason and Tina Wehrman’s three kids have Type 1 diabetes, a chronic illness where the body is unable to produce insulin and sugar builds up in the bloodstream. Wesley and Cooper were diagnosed with the disease at 2 and 11 months, respectively.
While the Ankeny couple was familiar with the disease, which Jason and two other family members also have, they still had to navigate the complexities of safely getting their sons to school. Jason worked from home the first year after Cooper was diagnosed, and they said getting them into early child care was difficult. They were able to send their sons to a 4-year-old preschool because a mother of another child with Type 1 diabetes ran it.
Wesley is now 13 and Cooper is 11, and the boys each have a 504 plan to ensure they’re able to care for their disease without affecting their education. They keep snacks with them in the classroom and have the ability to retake tests, as an out-of-range blood sugar level can affect cognitive function. Jason said the boys also need access to their phones to deliver insulin or check their blood sugar levels. Their 504 plan allows them to keep their phones on their desks.
Their sons’ chronic illness also affects the Wehrmans’ employment choices. Jason works from home in case he needs to help the boys at school. Tina works at BNIM as an associate principal, which provides the salary and health insurance that pays for the family’s diabetes supplies.
Tina said the 504 plans help her trust that her kids will get the care they need at school, but if they went away she doesn’t know if she’d be able to work.
“I don’t think they would go to school if they couldn’t have some of those amenities for them,” she said. “I’m not going to send them to school without being able to take care of their Type 1 diabetes.”
Van Sant believes that may be a decision many parents of children with disabilities will make if these protections revert back to the state. When it comes to their children’s safety, they’re unlikely to compromise, he said.
“Disability advocates and families struggle to get schools to follow 504 plans and IEPs that are legally required,” Van Sant said. “This idea that you can take away that legal requirement and all of the enforcement and just say, ‘Oh, well, we really care about these kids so we’ll do this.’ I don’t think most families will trust that. And if it’s your child’s life, you wouldn’t trust that.”
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