In June, more than 40 neurodiverse high school and college students traveled to Washington D.C. to meet with representatives from the Department of Education and elected officials. Their goal? To advocate for measures designed to better support students with learning disabilities in higher education.
“I think that a lot of the time, different learners are overlooked,” says Claire Robinson, a rising senior in Issaquah School District, who traveled to D.C. to join the lobbying effort. “And I think that we just need to call attention to this issue that we’re over and over left behind and not given the support that we need to succeed.”
That lack of support, according to advocates, comes from the fact that colleges don’t give the same kinds of support to students who have learning disabilities that elementary and secondary schools are required to provide.
More funding and a new bill in Congress might change that. And so dozens of students who are personally affected by these potential policies traveled to the nation’s capital this summer to speak in support of that proposed legislation, invited by Eye to Eye, a nonprofit focusing on better supporting students who learn differently.
Lobbying for more support for students with learning disabilities in higher education, the students called for increased funding for the National Center for Special Education Research and the Individuals with Disabilities Education Act (IDEA Act) — legislation which requires that children with disabilities be given a free and appropriate public education, and makes it possible for states and local educational agencies to provide federal funds to make sure that happens. They also encouraged lawmakers to pass the RISE Act, a bill designed to better support neurodiverse students in higher education.
Neglected By the Law?
One in five U.S. students learns differently, meaning they have a neurological difference that may make it difficult to process information, according to the National Center for Learning Disabilities, a research and advocacy organization committed to improving outcomes for people with learning or attention issues. Neurodiverse students are over three times more likely to drop out of school, and one third are held back a grade, according to an annual report from Eye to Eye.
To add complexity, undiagnosed learning disabilities can also lead to a host of challenges for students, such as punitive disciplinary practices and disinvestment in students displaying undesirable behaviors — and too often, these outcomes can fuel disengagement. The tough part is, in many cases, these undesirable behaviors aren’t the student’s fault, they are part of the student’s learning difference.
The IDEA Act requires that children with disabilities be given a free education in a manner appropriate for their learning differences. The law came out of the civil rights revolution of the 1970s, at a time when advocates around the country were pushing to expand civil rights for different marginalized communities.
The bill, signed by President Ford, came on the heels of legislation such as the Bilingual Education Act, which addressed the educational rights of bilingual students, and Title IX, which was put in place to protect people from discrimination based on sex in educational programs or activities, says Dr. Jonathan Zimmerman, a professor of the history of education at the University of Pennsylvania. Zimmerman adds that the IDEA Act was revolutionary, as before the bill, many learners with cognitive disabilities were considered ineducable. Before the bill was passed, students with learning differences were frequently sequestered in institutions where they didn’t receive an education, Zimmerman explains. The bill marked the beginning of a seismic shift in public perception, Zimmerman says. And with the progress made in the ensuing decades, he adds, “I think we have an enormous consensus now on the subject.”
Despite the wide acceptance of the IDEA Act on principle, the bill’s funding and allocation have long remained controversial, Zimmerman says. The IDEA Act has never been fully funded. The legislation requires the federal government to cover 40 percent of the added cost of special education, but in recent years it has only shouldered about 15 percent of those costs. This leads school districts to divert funds to make up that difference — funds that could be used to retain effective teachers and support programs that benefit students. For the 2019-2020 school year, the difference between what the federal government should have spent and what they actually spent was more than $23 billion, according to the National Education Association.
The RISE Act is designed to simplify and streamline the process for neurodiverse students to access learning support in higher education. It includes provisions that would require colleges and universities to accept the diagnoses and individual education plans that neurodiverse students already have when they get to college, and would supply funding to train professors working with neurodiverse students. The bill would also require colleges and universities to raise awareness about the support available to neurodiverse students and how to access it.
If passed, the RISE Act would also help families afford higher education by eliminating the cost of additional diagnostic testing, which many universities require and can be a significant financial burden, David Flink, founder and chief empowerment officer of Eye to Eye, said in a recent interview.
Letting Students Lead
Flink founded Eye to Eye in 1998, alongside a team of dedicated volunteers. The organization has since gone national, and is known as the only national organization run by — and for — people with attention and learning differences. Flink says his identity as someone with dyslexia and ADHD inspired him to create spaces for others who learn differently. Eye to Eye matches younger students who learn differently with older ones, who can teach them what it’s like to manage a learning disability in the classroom. The organization also teaches families and teachers skills to better support students who learn differently.
Flink says the idea to do a legislative push came from the students themselves. He says they wanted to share their stories and experiences with political leaders because they didn’t feel like they were being heard, seen or valued. And he believes the experiences of students are invaluable in lobbying efforts. “They know what’s wrong with the system, because they’re in it. And they know the difference between getting an equal shot can be something as simple an accommodation as extra time on a test or an audio format for somebody’s reading assignment — but can be the difference between an A and an F,” Flink says.
Robinson, the rising senior from Issaquah School District, who traveled to Capitol Hill to meet with lawmakers, says her efforts to be understood went beyond the classroom, reaching into her home life as well. Robinson says that, at times, conveying her needs to her parents felt like an uphill climb. “I think the thing that finally helped was copious amounts of research that I shared with them,” she explains. “I was like, ‘OK you guys need to sit down and listen to me. This is not me being lazy, I’m struggling.’” Once everyone was on the same page, Robinson says she found it easier to get the support she needed. “I think the lack of information makes it really difficult for parents to understand their kids,” she adds. Robinson thinks efforts like hosting info nights for parents to raise awareness and learn about diagnoses and accommodations could improve outcomes for students in the future.
The Rise Act “would have a pretty big effect on me,” notes Robinson. “It makes having a learning disability just a little bit easier when you’re entering higher education.” Robinson sees the opportunity to advocate for other students like her as empowering. “By advocating for policies that better support us, we can hopefully be more successful, and contribute to society the way that we should, and the way that we deserve to.”
It starts with recognizing the needs of students, says Anna Higgins, a rising sophomore at Colorado State University who attended meetings with lawmakers. “I’ve had a lot of teachers say, ‘this is how it works for everybody, so it’s going to work for you,’” Higgins says, adding that when teachers aren’t trained to work with neurodiverse students, they can leave as much as a fifth of their classroom behind academically, and can cause deep, emotional harm.
“On top of being frustrating, that is a level of othering that a lot of students with learning disabilities go through,” Higgins says. “It’s like, your peers can get this. All the people in your class get this. Why don’t you? That’s a really disheartening thing to go through.” Higgins says she benefited from the support and sense of community she found among other students with learning disabilities, and has been eager to pay it forward. When she heard about Eye to Eye’s trip to the Capitol, she jumped at the opportunity to join. “I was like, OK this is something I can do to make a difference, and I can really have an impact for those with learning disabilities like myself,” she says, adding that it’s vital for individuals with learning disabilities who understand policy to speak out.
“I don’t want the change to only be for the next generation,” Robinson says. “We need support now. And we need to make change now. And so that change might be small, but that change is still going to help so many people.”