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populations like seniors and disabled people who need long-term care disproportionately, and often result in outdated policies that harm disabled people most.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.

Advocates argue the rule is designed to suppress unions by making it more difficult to collect dues. And there’s more than union dues at stake: Home care providers could, for example, experience lapses in health coverage by failing to keep up with premiums.

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Many home care workers are family members providing home and community-based care to loved ones. Their work can include assistance with activities of daily living like bathing, dressing, and toileting, along with light housekeeping, help with errands, and other services designed to help disabled people and older adults stay in their communities. Home care is one of the fastest growing professions in the United States, with a projected growth rate of 41 percent for those working at agencies.

The median wage for home care workers is $10.49; a 2017 National Employment Law Project survey found unionized employees made $2 more per hour when examining the difference between weighted average wages. The majority are women of color, reflecting the gendered and racialized history of the field, and 28 percent are themselves on Medicaid.

In some ways, Medicaid-funded home care can act as an anti-poverty program and compensate people for care work that is normally considered unworthy of pay. “When I found out about In-Home Support Services [the California implementation of the program],” said Andrea Dudley, who cares for her son, “it was like a godsend…it’s not a lot of money, but it’s helped me.”

Home health work, like other labor that takes place in the intimate setting of the home, has been historically undervalued. When the Fair Labor Standards Act (FLSA) passed in 1938, domestic workers were explicitly excluded from wage and hour protections, in part at the behest of Southern Democrats. In the years since, domestic workers, including those offering home health services, have fought to organize. In the 1970s, Congress amended the FLSA to cover some domestic workers, but home health aides were still left out by a provision excluding “babysitters” and “companionship services.” But recently, they’ve started making gains. They won wage and overtime protections under FLSA in 2015 and have grown home care worker union participation. In 2010 they pushed for the passage of a Domestic Worker Bill of Rights in New York, and a similar national bill to extend these protections nationwide has been introduced by Sen. Kamala Harris (D-CA) and Rep. Pramila Jayapal (D-WA).

Now anti-union proponents, pushed by groups such as the National Right to Work Committee, are on the offensive. In 2014, they won a significant victory with Harris v. Quinn, which ruled that home health care workers are not public sector employees. Therefore, those who choose not to join the union may not be required to pay service fees, enjoying the benefits of collective bargaining without the costs.

In this instance, the government argues Medicaid monies should only be paid out to providers, with exceptions for tax deductions but not for third-party payees. In response to concerned comments about the implications of this rule, the government insisted that “it in no way prevents” home health workers from paying union dues, insurance premiums, and other costs via other means. To prove their point, HHS staffers even calculated the cost of envelopes and stamps for mailing payments.

While HHS staffers dismissed concerns, worker advocates argue this rule change could make things extremely difficult for home health workers, and not just when it comes to sending in union dues. Some are unbanked, making it challenging to mail a check. Others deal with significant demands on their time and schedules that could make it hard to keep track of due dates and mail things on time. Issues like these could potentially lead to lapses in health coverage and other problems that could be easily resolved with automatic deductions. More to the point, home health workers themselves have repeatedly stated they want the option to make assignments.

The extremely targeted nature of this rule has big implications. Independent providers are difficult to organize because of their far-flung nature. They don’t have a shared office, meeting place, or workspace to network, because they labor entirely in private homes, out of the public eye. They are underpaid and vulnerable to exploitation. Union membership can change that. Dudley commented that the union helps her “stay informed” and connected with other workers.

The rule is “a blatant attack on us,” she added, asking what should make care workers in particular subject to a bar on withholdings. It’s a question shared by other worker-advocates and their allies. Unions such as the SEIU and AFSCME are organizing against it, and at least five states are suing.

“It’s our choice to take our deductions out of our checks,” said Dudley.