But for their son’s first few years of school, when Custen was working in Draper, Utah, attending the annual Individualized Education Program (IEP) meetings that laid out this plan could have threatened their job. To participate in meetings 40 miles away, “I would need to use PTO, and there would need to be space available in the schedule for me to leave,” they explained. “If someone else had already claimed time off that day before I had the chance to, then I wouldn’t be able to take the time off myself without receiving a strike for an absence, which would put my job security at risk.”

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Custen’s son receives his services in part through IDEA (the Individuals with Disabilities Education Act), which serves around 14 percent of public school students. IDEA guarantees a right to an IEP, which includes an evaluation of a student’s educational abilities and needs and provides a detailed plan for any support services, specialized instruction, or accommodations they may need due to a disability. These accommodations may include alternative assignments, permission to record a spoken lecture, large print textbooks, extended testing times, assistance with organizing a desk space, or access to speech-to-text software, among many others.

Parents can be crucial partners when it comes to selecting accommodations in an IEP, but Custen’s job was making it impossible to get a seat at the planning table. Meanwhile, Custen’s ex’s schedule allowed him to regularly attend — a disparity that led to family stress and communication gaps around their son’s education plan. Their son’s behavior was different when he was around his father than when he was around Custen, for example, in part because their ex struggled to accept that their son was neuroatypical.

“He would often go into meetings with unrealistically rose-tinted lenses on our son’s behavior and progress,” Custen explained. “He would skew his own perception of our son’s capabilities and milestones. For instance, he would do 90 percent of the work in getting him dressed while our son would do 10 percent of it (such as pulling up pants or sticking arms through sleeves once his shirt was already pulled on for him) and claim that our son was capable of dressing himself.” This led to confusion over what kind of assistance their son would actually need at school.

Custen’s frequent absences meant the services their son received were selected based solely on his behavior around his dad. “The fact that I was not present at these meetings meant that they were taking him for his word on our son’s at-home behavior,” Custen shared. In turn, “they would have to hear from me later and go through the process of editing notes and plans for the IEP. I can’t imagine that it was easy or comfortable for the team helping our son to be caught in the middle of such a back-and-forth between [me and] my ex either.”

Some parent advocates believe problems like Custen’s could be partly alleviated by a recent announcement from the Wage and Hour Division of the U.S. Department of Labor (DOL). The agency responded to a parent whose employer denied their request to take intermittent Family and Medical Leave Act (FMLA) leave to attend IEP meetings. The agency clarified that employees whose children have “serious health conditions” (those for which a patient receives either inpatient care or continuing care from a medical provider) requiring IEPs are able to take time off under the Family Medical Leave Act (FMLA) to attend IEP meetings without losing their job or continued health insurance coverage.  FMLA allows eligible employees to take up to 12 workweeks of leave in a 12-month period for serious health conditions or to care for family members.

According to the decision, parents can use FMLA leave to attend IEP meetings because they involve medical decisions, discussions of children’s health and well-being with respect to those decisions, and the provision of proper physical and psychological care. Notably, the DOL also said a child’s doctor doesn’t have to be present in order for a parent to use FMLA time to attend their IEP meeting.

Amanda Morin, an education writer/author, parent advocate, and former teacher, knows many parents simply won’t be able to take advantage of the clarified policy, especially if they are low-income. Seasonally, intermittently, or self-employed parents are rarely eligible for FMLA, which is restricted to private employers with 50 or more employees working for them within 75 miles of a central worksite. Employees are only eligible if they’ve worked for at least 1,250 hours across the 12 months prior to the leave and have worked for their current eligible employer for a full year.

“Even parents who do have FMLA may not always be able to afford the time off if it will have to be unpaid,” she explained. Overall, around 59 percent of U.S. workers were covered by FMLA as of 2012. That number may have shifted downward since then due to the influx of freelance positions and the rise of the gig economy.

In many ways, this decision looks like a major move towards greater equity in education. Family members work schedules are often intimately connected to their children’s IEP meetings. For researcher, writer, and former teacher Mireya Vela, IEPs have always been a part of her life — and her job choices. Vela’s son, now 25, began his IEP at four years old after his speech delays and other developmental issues became apparent.

Vela tailored her work schedule, and even her choice of career, around her son’s educational and medical needs. “From the time my son was six to the time he graduated high school, I only worked part time. I couldn’t work longer than that,” Vela said. “I often had 2-3 jobs at the same time. But all my jobs worked around my need to drop everything and run to the school.” What’s more, Vela consistently advocated for meetings longer than the customary school-requested 45 minutes, and attended them flanked by a support team of clinicians and advocates — which often meant some rescheduling.

A parent’s ability to take FMLA time off for an IEP meeting will also depend on their child’s exact diagnosis and necessary support services. Morin said “it may also be challenging for parents of kids who don’t have a medical diagnosis, but have an IEP, because getting documentation of the need for leave isn’t as clear-cut.” There might be cases where a child is in clear need of services to help them with a disability or developmental delay, for example, but their family is uninsured or underinsured or can’t afford to see a high-level specialist. In other cases, a student might have to go through an extended period of testing or medical assessment before they receive a final medical diagnosis. Without a documented specific diagnosis, a parent may struggle to prove their eligibility for FMLA leave.

Still, Morin calls the ability to use FMLA intermittently for IEP meetings “a step in the right direction,” especially because not all eligible parents may have known that they could use time off for this purpose. “I’m pleased that it shines a light on the fact that an IEP meeting is tied into a child’s health and well-being,” she said. “I think, for parents who have not been able to leave work to get to meetings, knowing this is available, and feeling confident enough to bring it to an HR department to use the new policy, has the potential to be really empowering and increase family-school engagement.”

An equal, engaged dynamic between schools and families is critical, says Morin, because parents often understand their children more intimately. Parents also have more knowledge about how a student might learn or interact in different settings, which could impact the frequency or types of services they may need.

The DOL’s recent announcement marks a potential step forward in terms of recognizing IEPs as crucial to children’s well-being, health, and quality of life, rather than positioning them as optional “add-ons” to a one-size-fits-all public school education. For Brim Custen, family-school engagement was indeed the driving factor in their son’s well-being and educational progress at school. Later, when Custen began working as the communications coordinator for the Utah Pride Center, their new employer’s greater flexibility allowed for much more active participation in the development of their son’s IEP, and they saw a sea change after becoming more directly involved.

Initially, Custen’s inability to attend IEP meetings forced both families and school administrators to wade through red tape as they struggled to come to a full understanding of exactly what Custen’s son could and couldn’t do. “When he would move to a new classroom with new teachers, there would be some growing pains as they adjusted to the fact that I would seldom be present in person at these meetings,” explained Custen, “and I would end up having to disagree with my ex and provide different perspective after the fact through email or phone call.”

No longer mired in confusion, the team working with Custen’s son was able to communicate more clearly and flesh out a comprehensive plan to help him pay attention and regulate his emotions both in and out of class. “Thanks to there being an IEP in place and a team of teachers and therapists who understood his needs and worked within them, I’m proud to say that my son is doing vastly better in his behavior, self-control, and retention of information in school than we had anticipated he’d be able to,” Custen shared.

Like nearly 20 percent of American college students, Landre is disabled. And because Landre has spinal muscular atrophy type 2 and uses a wheelchair, her success is possible in part due to Medicaid-funded personal care assistance. The hours of personal care she receives at home allow Landre to live and study independently, while attendants help her complete crucial daily tasks related to hygiene, eating, and safety. But just a few weeks ago, her insurance company’s decision to cut her care hours from 112 hours per week to 70 nearly brought her college career to an end.

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Her insurer’s decision to reduce her access to in-home aide care is just one symptom of an underlying problem related to recent slashes to Medicaid funding. “New Jersey, like a lot of states, has tried to cut costs in their Medicaid program by contracting insurance companies called managed care organizations [MCOs], to manage it. It’s a weird way of privatizing Medicaid,” Landre explained. Some states contract with MCOs, made up of groups of health care providers, clinics, and organizations, to provide Medicaid services for a set amount per member each month.

This setup means MCOs are free in some cases to make cost-cutting decisions for profit, rather than basing decisions on actual assessments of medical needs and quality of life. Cuts affect marginalized populations like seniors and disabled people who need long-term care disproportionately, and often result in outdated policies that harm disabled people most. Almost 3 million seniors and disabled individuals rely on Medicaid for in-home personal care services that allow them to avoid institutionalization in a nursing home or other facility. “The incentives here are for them to keep cutting people’s care down, and there are very few consequences for that,” said Landre.

In the wake of a flurry of media attention, the New Jersey Department of Human Services reversed its decision, reaching a new agreement with Landre to reinstate her former care plan. But Landre and other disabled college students say it shouldn’t take public pressure on the part of individual advocates to address a much bigger underlying problem. “While this agreement will fix my situation, it does nothing to help thousands of other disabled New Jerseyans who continue to suffer due to discriminatory Medicaid policies and the predatory behavior of their insurance companies,” she wrote on Twitter.

Other students in Landre’s position have had to mount similar nationwide campaigns. From launching crowdfunding efforts and navigating complex bureaucratic systems for months at a time to spending hours publicizing their messages on social media, in press conferences, and on media outlets, disabled students often bear the burden of serving as both tireless advocates and public relations specialists just to attend college.

17-year-old Darcy Trinco, for example, who also has spinal muscular atrophy type 2, has faced many of the same obstacles in her path to a pre-med curriculum at Johns Hopkins University in the fall. Her current allotment of 30 hours of personal care services per week won’t be enough when she’s living independently. She and her family have been wading through a sea of red tape and uncertainty since she was first admitted.

Today’s stories of the roadblocks that often await disabled college students as they try to access educational opportunities are eerily similar to those faced by activist Nick Dupree (who sadly died in 2017) back in 2003. A quadriplegic and writing student at Spring Hill College, Dupree used in-home nursing care services through Medicaid while attending school in order to live independently. Threatened with losing those services upon turning 21, Dupree launched a campaign called “Nick’s Crusade” to fight for his right to remain in college and to avoid having to enter a nursing home facility after his 21st birthday.

Recently trending hashtags like #WhyDisabledPeopleDropOut are a sobering reminder that the obstacles facing disabled college students are systemic rather than isolated — and that not much has changed in the 16 years since Nick’s Crusade. “It’s so hard for disabled people to fight [this kind of segregation] in most cases,” Landre said, noting that, with family support and knowledge of the law, she’s actually “one of the lucky ones.” Many disabled students don’t have access to the same legal knowledge, family supports, and widespread publicity as the ones who most often make the news. Many disabled students don’t know that they even have the right to “fight the system,” much less the resources to do so.

Many disabled college students who drop out — which happens at around twice the rate of nondisabled students — cite trouble accessing accommodations and adequate personal care hours as significant factors in their decision to leave school. That’s why changes to state Medicaid policies through means like New Jersey’s proposed bill A4130, which would increase reimbursable personal care hours for working adults with disabilities, and broader civil rights legislation like the proposed Disability Integration Act could be so instrumental, Landre says, in leveling the playing ground for all students.

Landre knew the problem was deeper than her individual access to education, even after state officials reached out to her to sign a new agreement that would allow her to return to school. She isn’t about to stop fighting for her right, and the right of other disabled college students, to integrated education.

“So many other people just get a letter in the mail with an agency decision and don’t even know they can appeal. They have to go, ‘Well, now I have to get divorced, or move back in with my parents, or quit my job.’” She concluded, “It’s long past time for things to change” — both in terms of Medicaid’s outdated policies and in terms of ideologies that keep disabled people isolated, institutionalized, and excluded.