A Record-Breaking Tornado Season Is Pummeling Mobile Home Residents

“Our home is a 28×80 four-bedroom, two-bath that we got used three years ago. It was in like-new condition for a 15-year-old home,” said David Kelley, who lives in Beauregard, a town in Lee County, Alabama, that suffered major losses during a cluster of 34 tornadoes that caused 23 deaths on March 3, 2019. His mobile home sustained significant damage. “The storm knocked it off its foundation and cracked some of the metal piers underneath the house. It destroyed the roof and rafters and busted some of the floor joists,” he said.

That storm was one of a record 1,263 tornadoes in the U.S. tracked by the National Weather Service in the first half of 2019. Many of those storms have been concentrated in the Southeastern part of the country, in a region dubbed “Dixie Alley.”

Tornadoes in the South can be particularly deadly because there’s a relatively high percentage of the population there living in mobile homes — and most of those homes are spread out in rural areas, meaning lots of people with few options to escape the path of powerful tornadoes.

Alabama and the Carolinas are consistently among the top five states with the most residents living in mobile homes — as well as in modular or manufactured housing, which is intended to be in a fixed location, but is similarly dangerous in severe storms. According to the Manufactured Housing Institute, residents of manufactured housing have a median household income of just under $30,000 per year.

Protecting these low-income, far-flung populations with limited resources from major storms isn’t easy. That made them a subject of particular interest to researchers involved in a recent University of Maryland study examining mobile homes.

The first challenge people face is receiving critical information in time to allow them to take action. The researchers found standard tornado warnings are falling short in protecting residents. In particular, mobile home residents were less accessible on social media and more dependent on their local TV meteorologist.

Researchers also found the majority of mobile home residents had incorrect assumptions about what they should do during a storm, with many believing myths and misconceptions that could be dangerous like “if you’re driving, you should take shelter under a bridge during a tornado.”

The researchers recommended that National Weather Service Weather Forecast Offices should work more closely with local newscasters to address this information gap. Similarly, forecasters could prioritize actions that mobile home residents can take to deal with limited physical supplies and inadequate shelter.

But educational campaigns can’t solve the problem completely, because residents (and the communities where they live) face significant planning challenges due to lack of resources and available services.

“Mobile home residents in our study reported statistically significantly lower perceived access to shelter and self-efficacy to take shelter compared to fixed home residents,” the researchers noted. Developing emergency evacuation plans is challenging in areas where many residents may lack reliable vehicles or other resources, or may be reluctant to leave their homes and belongings unattended for what may turn out to be a false alarm. It’s also hard to assemble an emergency kit when you can’t afford things like weather radios, hand tools, back-up batteries and chargers, or extra quantities of medications — let alone bigger items like generators.

Kelley said that in rural areas like his, residents often lack the time — and sometimes the transportation or ability — to get to a community shelter, even if they know where one is. “I wish every rural home had to have a storm shelter of some sort. We had four and a half minutes warning with this storm,” he said.

We had four and a half minutes warning with this storm.

“It’s great to have community shelters available, but if people don’t have transportation to get there, or wait till they have confirmation of an approaching tornado before they move, the shelters are not effective,” said David Roueche, an assistant professor of structural engineering at Auburn University — located in Lee County. He specializes in researching wind damage and ways to make structures better protected from high winds.

He led a team that analyzed the impact of the March 3 storm, and specifically looked at the 19 out of 23 victims who lived in manufactured homes. Their investigation revealed that all of the manufactured homes involved either had degraded anchors, had anchorage systems that apparently didn’t meet state code, or lacked ground anchors entirely. Anchors are devices – generally made of metal, sometimes coupled with concrete – that are used in conjunction with straps or tie-downs to secure the structure to the ground.

“We know it’s a problem. What can these people do? We can enforce stricter building standards to give people a much better chance of survival in their home. We can install micro-community storm shelters — as in, smaller shelters that serve a street, or a cluster of relatives — but this all takes money that the residents don’t have. So how do we prioritize the limited pre-event mitigation funding from FEMA or other groups? What other funding mechanisms can we use? These are the questions we’re asking right now,” he said.

While progress has admittedly been slow, Roueche said he is encouraged by results seen in communities such as Moore, Oklahoma, which adopted enhanced building codes to strengthen their homes, with minimal impact on home prices. He is also a proponent of storm-vulnerable inland areas adopting the same Department of Housing and Urban Development building standards recommended in Florida and coastal regions, since climate change and unusual weather patterns have increased the incidence of extreme storms in a wider range of locations.

With nowhere else to go, Kelley said his family has no choice but to stay in their home while it is being repaired. “It is coming along slow but steady,” he said. He created a memorial area on a section of his property, where he will plant 23 fruit trees — one for each of the lives lost in the storm. The memorial also has a pond and chairs where people can come and remember the victims or just enjoy some peaceful solitude.

Kelley said he hopes it will provide some comfort to local residents.



You Think Airline Food Is Bad? The Conditions It’s Made In Are Worse.

On Tuesday evening, passengers at Washington D.C.’s Reagan National Airport (DCA) were greeted with shouts of “one job should be enough!” and “when we fight, we win!” by airline catering workers holding an informational picket and rally. The UNITE HERE union members were out in force to draw attention to the conditions they’re experiencing on the job, and to warn that 15,000 fed up airline catering workers across 32 U.S. airports just voted to authorize a strike.

They want a $15 wage floor and reasonably-priced health care, and they’re united across the industry: The DCA demonstrators work for LSG Sky Chefs, which serves American Airlines at DCA. Employees at Gate Gourmet, another major industry player, joined the strike authorization; Delta Airlines and United Airlines could also be affected. Together, they account for three of the top four airlines in the United States, carrying nearly 400 million people in 2017.

Eyerusalem Retta has been working in the bowels of DCA as an airline caterer since 1989, preparing beverages for customers like American Airlines. She said her starting wage was $5.15 an hour. After 30 years of service, she makes $13.35. “Our job is hard, we need better insurance, and for many, we want better retirements. We’re almost retired!,” she told TalkPoverty. The $15 minimum wage workers are demanding would result in a wage increase for “the majority” of airline catering workers, according to the union.

American Airlines made $1.9 billion in 2018.

Organizers are also contending with the high price of employee health insurance, especially for families; Retta pays $131 dollars weekly for her five-person family, a hardship on low pay. The health care situation is especially acute for workers with a long history of service. They are facing low wages paired with growing health issues caused by a working life of demanding physical labor that need attention. Sonia Toledo, who has worked for LSG Sky Chefs in Miami for 16 years, told TalkPoverty “I don’t have it, I don’t have any health care.”

A $15 minimum wage would result in a wage increase for the majority of airline catering workers

“I’m paying for one bedroom, $1,700 a month. I have to work overtime. And sometimes, I don’t want to do it, but sometimes I need to work for Uber for extra money. It’s very tough. I’m a diabetic, I have to get medicine, I have to eat certain foods. So I gotta pay for this stuff,” said Nelson Robinson, a DCA worker who pays $50 weekly for his employer health insurance but adds that the copays are a burden.

Getting to this point has been a challenge. According to UNITE HERE, workers began negotiating a contract with Gate Gourmet in October 2017 — a company spokesperson told TalkPoverty the company “continues to work in good faith with the union” — and Sky Chefs in October 2018. But collective bargaining is difficult for airline and railway workers thanks to the Railway Labor Act of 1926, which guarantees bargaining rights in these industries with limitations. Specifically, workers can’t strike without permission from the National Mediation Board.

The union requested mediation in its negotiations with Gate Gourmet and Sky Chefs in June 2018 and January 2019 respectively as it moved into the next phase of its negotiations. Now, workers are requesting a release to strike this week, hoping the Board agrees that the parties involved are unable to agree to arbitration. Workers have signaled that they are ready to strike as soon as the 30-day cooling period is up. Passengers in San Francisco, Seattle, Chicago, Boston, Los Angeles, Atlanta, and more would notice very quickly. Several affected airports are major regional hubs, like Atlanta, where a labor disruption could be costly for airlines.

It’s not just about the pay and health insurance. Working conditions for catering crews are extremely poor. Airline food is the subject of many a late-night comedy routine, but a flight without even the basics — like water and tea — can quickly turn into an unpleasant one. In fact, airlines are legally required to provide food and water to passengers stranded in tarmac delays. Fully cleaning out and resupplying a plane from the moment it arrives at the gate to the time it pushes back is a delicate but high-speed dance; every minute counts.

The work behind that turnaround, tiny bags of pretzels, plastic-wrapped swizzle sticks, and all, can be grueling. Those working at the airport must contend with blazing tarmac heat in summer and frigid conditions in winter. Offsite locations, where food is prepared and readied for catering, are often poorly temperature-controlled as well. For those in refrigerated work environments, the cold is constant. Retta described two years with no air conditioning in the notoriously swampy climate of D.C.

Caterers also work with caustic cleaning chemicals, sharp knives, and boiling-hot industrial dishwashers, all of which expose them to the risk of occupational injuries. In 2015, a Centers for Disease Control report documented high levels of carbon dioxide in refrigerated workspaces along with lack of access to water, and noted that most entries on injury logs were “acute traumatic injuries” like knife wounds.

Most entries on injury logs were “acute traumatic injuries” like knife wounds

Gate Gourmet and Sky Chefs have both run afoul of the Occupational Safety and Health Administration (OSHA), most notably in cases involving the deaths of airport truck and lift operators or nearby employees, the people passengers are most likely to see while peering impatiently out the window to see if their planes are ready. In 2017, SkyChefs faced thousands of dollars in OSHA penalties for failing to maintain safe and operable exit routes.

Poor conditions are bad news for passengers, too. In 2018, the Food and Drug Administration cited Gate Gourmet for “dead apparent nymph and adult cockroaches too numerous to count” in one Kentucky catering facility. It is the tip of a moldy, poorly temperature-controlled, cross-contaminated iceberg.

Without strike authorization, workers can and will continue trying to negotiate with their employers. The unions has not announced any plans to leverage slowdowns, stoppages, or sickouts — such as the large number of illnesses seen among flight traffic controllers during the 2018-2019 government shutdown. (The union made it clear that they did not “condone or endorse” such activity.) It has indicated that it will continue to pursue all legal means for resolving the labor dispute. But, the union noted in reference to the DCA action, “while we will continue this process it’s important to know that American Airlines can end this dispute right now, without the need for a strike,” by setting standards for pay and health insurance for catering workers.

In the meantime, the next time you open a stroopwafel on United, think about the hands that packaged it. 

LSG Sky Chefs did not respond to a request for comment.



A New Trump Rule Could Threaten School Lunch for One Million Students

75 percent of school districts have outstanding “lunch debt” racked up by students who couldn’t pay for meals. In large districts, that number can approach $1 million. At the end of the school year, when that debt comes due, kids with outstanding balances are denied opportunities to participate in activities, prevented from graduating, or forced to watch school cafeteria staff throw their food away. Pennsylvania’s Wyoming Valley West School District even threatened to place children owing as little as $10 for school lunch into foster care.

Now, a new Trump administration rule could make paying for lunch even harder for thousands of students. Via changes to a rule known as “categorical eligibility,” the Trump administration is trying to undermine access to the Supplemental Nutrition Assistance Program (SNAP). This program is commonly used as a basis for certifying kids for free and reduced lunch. That could increase the number of kids going hungry at home and struggling to pay for lunch at school.

Under categorical eligibility, households that qualify for certain cash benefits, including Temporary Assistance for Needy Families (TANF) and General Assistance, are treated as “categorically eligible” for SNAP. Since they have already met the income and asset tests set by the state for the other program, they do not need to endure a separate eligibility determination to qualify for SNAP.

43 states have introduced a form of this known as “broad-based categorical eligibility,” which allows people to qualify for SNAP if they are eligible for certain non-cash benefits and services funded by TANF, such as child care assistance and work supports, along with Medicaid in some states. Since many states allow households with incomes up to 200 percent of the poverty line ($50,200 per year for a family of four) to receive these benefits, this method of qualifying people for SNAP creates a gradual phase out of benefits as family incomes increase. Without broad-based categorical eligibility, anyone earning more than 130 percent of the poverty line ($32,630 per year for a family of four) could lose their SNAP benefits.

In short, broad-based categorical eligibility improves access to SNAP — and would be radically altered by the new rule that the USDA will open for public comment tomorrow. Under the rule, only people receiving “substantial” benefits valued at $50 or more would be eligible, and only if they utilized work supports, child care vouchers, and subsidized employment.

These changes could strip SNAP from 3.1 million people, and school lunch from 500,000 kids.

The USDA estimates these changes could strip SNAP from 3.1 million people in 1.7 million households. A 2019 report estimated that similar changes could threaten access to school nutrition programs for 265,000 children who get free and reduced lunch due to their SNAP enrollment. But in a June 22 phone briefing with the House Committee on Education and Labor, the USDA admitted this number could approach 500,000. And in October 2019, the USDA admitted that nearly one million children could lose their lunch benefits.

Children in 2.9 million households experienced food insecurity in 2017. And while child poverty rates are falling, 41 percent of children remain low-income and have difficulty paying in the cafeteria — one reason the U.S. has a free and reduced lunch program. During the 2018-2019 school year, 22 million students a day ate free and reduced lunch across the United States. Nearly all U.S. public and nonprofit private schools participate in the federal school nutrition program, which compensates schools on a sliding scale for every meal served.

Eligibility for free and reduced school meals can be based on an application submitted by the student. But foster and migrant youth, runaways, and children in families with benefits like SNAP (and in some cases Medicaid) are automatically qualified for free meals. They can be identified through direct certification, a federally-required process that compares school enrollment records to records maintained by local benefits agencies. Children who qualify for SNAP via broad-based categorical eligibility may not be eligible for school lunch otherwise, say advocates. The USDA disputes this claim, saying children who lose SNAP would still be eligible by applying directly, though according to the agency’s own guidelines, this might not necessarily be true, and this would increase the administrative burden on schools.

Losing school lunch has serious implications for low-income children counting on year-round nutritional supports. Even the relatively low cost of school lunch, which typically costs less than $3 at full price, can be too much for children living on the margins. Hungry children have difficulty focusing and don’t perform as well in school. They can also experience behavioral problems that disrupt their educations as well as that of other students. Research also shows growing up with nutritional deprivation can cause developmental delays and lasting physical effects.

Fewer children eating meals is a problem for the school, as well, because school nutrition is already underfunded. The government compensates schools by meal served, not by child; if children aren’t receiving meals, the district will not receive state and federal funds. Reduced funds limit the school’s or district’s purchasing power, making it harder to negotiate affordable prices to keep meal costs down. At the same time, labor costs for school cafeterias will remain relatively consistent, forcing districts to pay for food preparation, administration, and other services with reduced budgets. Dropping children from the free lunch roll will have negative effects on district finances — which, as lunch debt shaming shows, are already precarious in some districts.

SNAP is designed to secure access to safe, wholesome food for people who have difficulty affording it on their own, and if the new rule becomes reality, affected children will lose the benefits paying for food at home as well as the eligibility for food at school at the same time. Some may go hungry, while others may begin to rack up school lunch debt, one carton of milk at a time. The affordability problem won’t vanish when the SNAP benefits do, and hunger will follow children from kitchen to classroom.

Editor’s note: This article has been updated (July 29 2019) with updated numbers regarding the estimate of how many children will be dropped from the free and reduced lunch program. It was updated again (October 16 2019) to reflect the USDA’s revised numbers.


First Person

How Child Protective Services Can Trap the Parents They’re Supposed to Help

I woke to the sound of my 3-year-old daughter crying. It was a hard, bitter cry. If you have young children, you know the one — it punches through the walls and triggers your heart into a frenzy. I sprang up, ready to run to her bedside. But as wakefulness returned, the sound faded. My daughter was not crying for me. She wasn’t even there. She and her 4-year-old sister were taken from my custody more than a year earlier by the state of Florida.

In the United States, 7 million children are reported to abuse hotlines each year. More than 3 million of those allegations trigger a child maltreatment investigation. But that’s just the beginning of the story: Once a finding of child neglect has been made, parents have to try to correct the issue or issues that led to child protective involvement. Typically, that involves mandates for parents to undergo addiction treatment, find stable housing, secure employment, begin therapy or psychiatric care, and so on.

There’s a problem, however: Taking all those steps and proving they’ve occurred can be a byzantine process, with hard deadlines, ignorant investigators, and unsympathetic judges who work against parents. For parents who are up against the clock set by the Adoption and Safe Families Act — which requires states to file for termination of parental rights if children have been separated from their parents for 15 out of the 22 most recent months — these delays can mean the difference between reunification or the permanent severance of a family.

If you rely upon mainstream media to clue you into the state of child rearing in the United States, you could be forgiven for believing that a typical child services case looks like a father throwing his toddler against a wall, or a mother slipping some of her prescription methadone into her infant’s bottle. But physical abuse cases comprise less than a quarter of substantiated maltreatment cases. Neglect accounts for the other three-quarters — and in child welfare terms, “neglect” is a very wide umbrella.

The most basic definition of child neglect is deprivation of something essential, such as food, appropriate clothing, housing, child care, or medical attention. Each state gets to refine the specific definitions of child neglect within that broad federal parameter, but they all generally leave the door open for child neglect to be defined as a lack of financial means, or issues that can result simply from poor parental access to mental health or addiction treatment.

My case began with an accusation of drug use. The investigator — an inexperienced member of the County Sheriff’s Office in Broward County, Florida — did not speak with me before deciding to petition for the state to shelter my kids. She looked at my records from methadone treatment nearly five years earlier and decided she did not need any more information. I found her card in my bedroom when I returned from a trip to Miami. My daughters were given to my in-laws, pending a dependency trial, which began two months later.

By then, I had submitted enough negative drug tests to shift the accusations from active drug use to whatever they could pin on me, which ultimately amounted to poverty and mental health treatment. I was still struggling to secure permanent housing, and because I didn’t qualify for Medicaid without custody of my daughters, I was not in therapy for my post-traumatic stress disorder.

It’s important to note that there is no national “child protective services” agency. Instead, each state has its own child welfare department — sometimes called CPS, sometimes something else — and each jurisdiction within the state governs its own specific proceedings. Service providers generally have to be approved by the local child welfare authority, and jurisdictions are supposed to help parents access them. But the disparity between some jurisdictions’ caseloads and the number of available services can mean long delays or inadequate referrals. And because CPS functions differently in each state and data are self-reported, there are not unified statistics on the number of parents involved in this process in the U.S.

In my case, the judge ordered a slew of services, including a psychiatric evaluation, substance abuse treatment, trauma-based therapy, parenting classes, random hair and urine drug screens, and family therapy, all to be completed maintaining stable housing, income, and paying child support. I was never offered any help with housing or employment, and by the time I received my first referral for mental health services, three months post-trial and six months since the start of the case, it was already time for my October case review. The judge deemed me noncompliant for all of my services, despite the lack of opportunity I had been given to complete them prior to the hearing. Although data does not exist on average wait times for parents involved with child services, social workers agree parents can wait up to six months for referrals and other help.

Far worse than the delays, however, was the quality of care offered to me, especially regarding addiction treatment. Prior to the child services case, I had been living in Seattle and engaged in buprenorphine-based pharmacotherapy for opioid use disorder. I had to taper off my prescribed buprenorphine because I did not know where  to access it in Florida without health insurance. When I was given a referral for an addiction treatment provider, it was to an abstinence based-program that openly espoused punitive practices. By that time, I had been separated from my daughters for six months, granted only one weekly supervised visit. Referral delays had also barred me from engaging with trauma therapy.

I am haunted by a constant hunger for the chaos of motherhood.

After the hearing where I was deemed noncompliant, a sense of hopelessness settled over me. I began to believe that administrative issues would continue to be conflated with bad parenting, and that I was fighting an unwinnable battle. Divorced from all of my supports and motivations, and in a state of deep depression, I finally relapsed, as I had been accused of doing for the past six months.

I spent the night puking over my toilet, regretting the decision to use. When I was drug tested at my evaluation, I learned that I had injected illegal fentanyl, a super-potent opioid that has been popping up in heroin supplies across the country and driving a spike in overdose deaths. But my evaluator was not sympathetic. She demanded that I attend detox, even though a one-time use does not produce a physical dependency that would necessitate a detox, and did not offer me the pharmacotherapy that would have best prevented continued use.

When I asked my case worker for another referral to an evidence-based provider, I was ignored. In late April 2019, more than a year after my case was opened, my attorney notified me about a medication-assisted treatment program that would be financially covered. I enrolled immediately, and recently won a court battle to have it accepted — so long as the buprenorphine was only administered on a temporary basis. (Studies, meanwhile, have shown that buprenorphine is most effective in patients who take it for two years or longer.)

My clock is up in late August. At the beginning of last year, my life was a mess of sleepless nights, playdates, toilet training, and seemingly endless house chores. There never seemed to be enough time in the day. Stress was my baseline.

Now, my life is a series of endless, empty hours broken only by the routine of my court-mandated services. Instead of fixing breakfast and coaching my girls through brushing their teeth and dressing for school, I drink coffee alone before biking through the heat of Florida to three and a half hours of intensive outpatient therapy, five days a week. I am not greeted in the afternoon by my daughters, but with texts from a faceless social worker directing me to take random drug tests. My days are shaped by paperwork, mandates, and a persistent sense of longing. I am haunted by a constant hunger for the chaos of motherhood. I miss stepping on Lego bricks, and bedtime kisses. I miss cajoling broccoli into stubborn mouths, and big shrieking hugs as my girls tumble off the bus from school. Every time I see my daughters now, something has changed: a favorite color, a hair style, a shoe size. I am missing everything, and I have no idea when or if my real life will begin again.




How Medicaid Cuts Almost Forced A Disabled Student to Drop Out

Anna Landre is by every measure a highly successful student. The Georgetown University School of Foreign Service student and high school valedictorian has maintained a 3.9 GPA as a Regional and Comparative Studies major since she left her New Jersey hometown two years ago. She has also served as an Advisory Neighborhood Commissioner representing the city of Georgetown and surrounding neighborhoods with policy recommendations for the District of Columbia’s government.

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.

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.

Obstacles facing disabled college students are systemic.

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.