This story was originally published by The 19th.

MILWAUKEE — When Yessenia Ruano walks through the door of her home after work, her husband, Miguel, is in the kitchen, shredding chicken with two forks, and her twin daughters are in the living room, playing on an iPad. The sound of “Primer Impacto” fills the background. 

Ruano opens the fridge to keep the dinner prep going. On the top shelf, there are more than 150 corn tortillas lying flat in their plastic bags. On the bar counter, near unopened mail and trinkets, is a pack of zinnia seeds waiting for the last frost to pass before Yessenia and the girls plant them in the patio across the driveway. 

This doesn’t look like the home of a family on the verge of being uprooted, until Ruano and her husband — one rolling chicken into tortillas over hot oil, the other tending to a pile of dishes on the sink — start talking about the questions suddenly pressing on their everyday lives. 

In February, during a check-in with Immigration and Customs Enforcement, an agent told Ruano that the government would accelerate plans to deport her. Save for a change in her immigration status, the agent said, she should report back to ICE in two months with a plane ticket back to El Salvador set for 50 days out. 

It’s April now; her next appointment with ICE is coming up in just a few weeks. “She said I should buy just one plane ticket,” Ruano, 38, tells her husband, recalling a conversation with a colleague at the local public school where she works. Her colleague reasoned that if Ruano bought a fare for everyone in the family and her deportation was averted, they’d be throwing a lot of money in the trash.

“I’ve always thought we should buy four tickets,” Miguel tells her, hunched over the sink. A few months ago, Ruano went on a ladies’ retreat with her church for two nights and left him and their two children to fend for themselves. The girls cried and cried and barely slept. Their dog — a fluffy, white Bichon Frisé who was named Snowflake before the family adopted him and is now named Copito, short for snowflake in Spanish — barely ate. 

Ruano agrees that the family should stay together, but most days, she’s convinced they’ll never use any of the plane tickets in question. Ruano, for 14 years, has clung onto hope that the immigration powers that be will eventually see that she belongs in the United States. She has checked in with ICE 17 times, worn a GPS monitor. She’s also built the life she shares with her husband and their Milwaukee-born daughters, a job at a local school and volunteer work at her local Catholic parish. 

Through it all, she has searched for ways to create roots in the United States. Recently, she petitioned for a visa created for human trafficking victims, based on her experience of forced labor when she first entered the country. That petition is stuck in the growing backlog at the agency that handles visa applications, one that has accelerated since the start of the Trump administration.

“Of course, practically speaking, they can do whatever they want,” Ruano says. “If they’re a little human, then I can prove I belong here. If they just care about detaining people to meet a certain quota and deport them — if I’m just another number — then I can already hear them saying, ‘Ma’am, I don’t care about your case. We’re so sorry, but we’re going to send you back to your country.’” 

Ruano is among the millions of immigrants living in the United States who are facing deportation as the Trump administration ramps up the removal of people with no permanent immigration status. That includes immigrants who, like Ruano, have been in the country for more than a decade and have no criminal record, and whose ties to the country include young children — some of them U.S. citizens — and also careers and community. 

Ruano’s precarious situation isn’t entirely the product of Trump-era policies. Like millions of immigrants living in the United States, she entered the country at the southern border, lured by the promise of safety and stability. Like thousands of others, she asked for asylum and was allowed to stay as she waited for a resolution on her petition, as long as she followed the law. Even after her petition was unsuccessful, the U.S. government allowed her to remain in the country provided that she checked in regularly with immigration officials. 

Under the United States’ broken immigration system, one in which laws that haven’t been updated in decades no longer align with the reality of immigration patterns, the country’s reliance on the immigrant labor force or even the government’s ability to enforce such laws, immigrants like Ruano have always lived at the discretion — at the whim — of whoever is in power, from the president down to the ICE officer who is looking at their case that day. 

When President Donald Trump was inaugurated in January, that dynamic changed again, fueled by an agenda that seems to be taking shape day by day. 

Ruano remains in this limbo, bracing for her life to be upended while fighting for a different outcome. She follows the countless news stories about people who are in ICE detention, or who have been swiftly deported back to their home countries. Hundreds of thousands more are living just like her, navigating the shifting sands of American immigration policy. 

Ruano’s day usually starts early, and by 6:15 a.m., her daughters Paola and Eli, 9, are in the dining room, ready for their mom to brush their hair. Back in El Salvador, Ruano didn’t think she would ever have children. The world seemed dangerous and broken, and life was expensive. “With the cost of living, I always thought, how?” she said one morning while brushing Eli’s hair and finishing it with a braid.

Ruano and her husband went to high school together in El Salvador and reconnected again in Milwaukee at the frozen pizza manufacturing plant where they both worked. Eventually, they started dreaming of growing their family. Soon there were four of them. Juggling two babies was hard, but they both landed steady work and were able to buy the duplex they live in, an older home they’ve improved slowly. Here, they are watching Eli and Paola thrive. 

Eli loves art. She loves to take clay-like dirt from the backyard and shape it. In their living room, Ruano points to a little bowl made of coiled clay, brown and crumbly and beautiful. A bucket holds dozens of small figurines made with air-dry clay, detailed and complex. 

Paola is much more interested in building with Legos, and Ruano says proudly that she is ahead of her peers in math. Barely older than her sister, Paola has also taken on a caretaking role in the family that Ruano says came to her naturally.

Ruano’s daughters have been learning the violin and the viola. They’ve been debating whether to keep going with the string instruments or move on to another extracurricular activity.

“All of those special skills and talents, we can’t really tend to them in my country,” Ruano said. “It’s like they’re trying to rip away my dreams, and also those of my two girls.”

Eli and Paola are U.S. citizens. Their lives would be significantly different in El Salvador, where economic opportunity, gender-based violence and more could alter the course of their lives. Their father, Miguel, has no legal immigration status. The 19th is not publishing his last name to protect his privacy and employment.

Both times Ruano has appeared before ICE this year, agents have alluded to her daughters. During her February appointment, the agent said Ruano should buy plane tickets for her girls as well because she “would hate to see the family separated,” Ruano recalls. During her April appointment, Ruano’s lawyer at the time recalled that the agent scanned Ruano’s plane ticket and asked why she hadn’t bought plane tickets for the girls.

Ruano has spent time talking to each daughter about the different possibilities ahead for their family, including a new life in El Salvador. 

“I tried to focus on the positive things, things I liked as a girl,” Ruano said. Ruano explained that the school day in El Salvador would be shorter — the country has one of the shortest school weeks in the world. There would be more time for play. 

“I told them that they’d see mango trees, orange trees,” Ruano said. “Things we don’t have here.” 

They’d still get to sleep next to each other, as they do in Milwaukee.

Ruano has a trove of files documenting her immigration journey in the United States, but one piece of paper worn thin from years of use tracks every check-in she’s had with ICE since she entered the United States from Mexico in 2011.

At the time, Ruano petitioned for the only form of relief she was told she was eligible for, a form of asylum called “withholding of removal,” which requires immigrants to prove that there is at least a 51% likelihood of suffering persecution in their home country. 

When her case finally came up for review a decade later, a judge told Ruano that her petition would be denied and said Ruano could withdraw it to avoid having the denial on her record. During the hearing, the judge told Ruano through her then-lawyer that the U.S. government wasn’t actively deporting people like her, who had no criminal record. She could explore other avenues for legal status. 

By 2024, she was running out of alternatives and time. ICE placed her in a monitoring program called Alternatives to Detention, or ATD, and told that her deadline to file for a different path to legal status was near. 

ICE advertises the ATD program as having been designed for immigrants who were “thoroughly vetted” and deemed not a risk to public safety. To enroll someone in the program, ICE officers consider their ties to the community and status as a caregiver or provider. Ruano checked all of the boxes. 

Ruano’s participation in the program left a mark: She has a band of pale skin around her wrist, where ICE secured a GPS device. 

The device tracked her location, had facial-recognition software for regular check-ins with ICE, and had messaging capabilities between the agency and Ruano; “Please call your officer” was a regular prompt. Ruano could swap the batteries to make sure the wrist monitor was powered at all times. Sometimes the backup battery wouldn’t work, so she was left to plug the monitor — still attached to her wrist — directly into a wall outlet. When it became loose and couldn’t read her pulse, it would blare loudly. “I would be in the classroom with kids, trying to fix it,” Ruano said. 

At home, Ruano pored over the internet and eventually found a firm in Chicago that helped her file for a T visa as a victim of human trafficking. 

The application was almost complete when Ruano was asked to report to ICE for a check-in on Valentine’s Day. Ruano’s lawyer at the time told her that she feared there was a better-than-90% chance she would be detained. Ruano felt that the time she was promised to finish her application had been suddenly taken away.

She spent most of the week of the appointment working furiously to make sure her T visa application was in the hands of U.S. Citizenship and Immigration Services, that her personal documents were in order, that there was a care plan for the girls beyond Miguel. She did all of that while juggling calls with reporters and advocates from Voces de la Frontera, the local immigrant advocacy group supporting her. She watched herself get to the brink of an emotional breakdown. The voice inside her head begged for surrender: “I’m done. I can’t keep going. I’ll go back to my country and start over, from zero. The fight is over.”

It’s a shift from her default, a hope and belief that things will work out. 

“It’s been 14 years and I’ve suffered a lot of stress, a lot of anxiety. Every week before one of my hearings with a judge or a check-in with ICE, those are nights of no sleep,” Ruano said. “I’ll wake up at one in the morning needing to vomit.” She’s had 17 appointments over that time span, and 17 sleepless weeks.

Unlike many immigrants without authorization to permanently live in the country, Ruano has not and does not live in the shadows. The U.S. government knows exactly who she is, where she lives, where she works. Ruano said she was not — and is not — willing to defy a deportation order.

“It wouldn’t be worth it,” she said. “I would rather go back to my country, whatever may happen there. Because when I think about living in the shadows, not being able to use my real name, never being at peace … I don’t want to live in hiding, waiting for the day they knock on my door.” 

At the bilingual public school where she teaches, in Milwaukee’s heavily Hispanic South Side, the chaos of Ruano’s immigration limbo dials down. 

“I feel like I’m in my own world,” Ruano said. “My problems stay back home.” When she walks into a classroom full of kindergarteners, she tells herself, “Vamos a echarle ganas a este dia.” Let’s do this. 

It’s an easy place for her mind to wander to the version of the future she has dreamed for herself. She’s an assistant teacher supporting the youngest learners with the most challenging needs. “I’m always thinking about getting my teaching license,” Ruano said, “so I can have my own classroom.” 

Milwaukee has for years struggled with a shortage of teachers, falling victim to the nationwide teacher shortage. The district’s superintendent announced recently that the next school year would start with 80 vacant teaching positions, and that’s with a recent decision to thin the district’s central office by moving more than a fifth of its administrative staffers with teaching certifications into classroom positions. 

In El Salvador, Ruano graduated from high school and worked her way through college to become an upper-grade teacher. She looked for work in education and wound up cleaning houses instead, joining other teachers with training but no place in the workforce. “You just end up having to do other work,” Ruano said. “I got here and saw that there’s so much opportunity. Here, they need teachers.”

Ruano’s workday begins outside the school, where her job is to welcome kids getting dropped off by their parents. On a frigid April day — she does this same job on frigid January days, too, just with extra gear — most of the interactions are quick hellos and good mornings. One little boy in a Minecraft backpack is refusing to walk in. He’s sad, and he’s asking for his mom. Ruano leans down to chat with him for a minute, a hand on his shoulder, a warm smile beaming. Eventually, he decides to go inside. 

Ruano’s job at this public school has anchored her firmly in this community. As part of Ruano’s public plea to immigration officials, teachers and parents from her school have written letters about the value she brings to her community. One parent wrote that their child had been upset for days, worried about the fate of his favorite teacher. Ruano read one of these letters during a news conference before she walked into her February check-in, surrounded by TV cameras and supporters from Voces de la Frontera. Within 48 hours, they collected 2,800 signatures in an online petition supporting Ruano.

When Ruano walked out of the courthouse that day, she went to the school to drop off her girls. Students filled the hallways and stairwells, erupting in cheers, relieved that she had not been detained. 

“What was really sweet was that she led them in singing our school song. They’re usually quiet and shy when we sing it during our school assemblies. That day they were not,” said Brenda Martinez, who helped found the school and acts as its principal. Martinez has been worried about Ruano’s case and said the school can’t afford to lose her. 

“She has a lot of patience to work with the littlest learners. That’s who she is,” Martinez said. “To lose her is like losing a member of our family.” 

One of the most remarkable aspects of Ruano’s journey, she’ll say herself, is her own outlook in the face of so much upheaval. “La esperanza no se me quita,” Ruano said. For the most part, she can’t shake the hope that someday, things will inevitably work out. 

When she reached a point of desperation earlier in the year, she said the thought that pulled her out was a Bible verse she’d memorized. “I could hear Joshua 1:9 in my head: ‘Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.’”

Ruano and her family are devout Catholics and also involved with a local Evangelical church. Faith runs through their lives, though the urgency with which Ruano prays lately is new. 

During a recent Spanish-language Mass at the parish the family attends — the large hall filled quickly to capacity — the Rev. Javier Bustos opened the service with a prayer that asked God for “justice for the nation’s immigrants.” Bustos said in an interview that since the start of the Trump administration, fear has become palpable in his community, and Ruano’s family is just one of the many whom he prays for. 

In many ways, Ruano’s journey to the United States is not unique. She watched violence escalate in El Salvador, and grieved when her brother was kidnapped and later murdered. Her fear for her safety, combined with economic uncertainty, made a future in her home country look grim. 

Her first attempt to enter the United States resulted in her immediate removal. She tried again less than a year later, paying a group of coyotes to guide her way into the country safely. Once in the United States, Ruano said, she became trapped in a filthy home and forced to work for her captors. She was eventually released after they extorted more money from her family back home. This forms the basis for her claim for a T visa, which requires her cooperation with law enforcement. 

Bustos, Ruano’s priest, said in an interview that every immigrant’s story is different, but that losing closely knit members of this church community feels the same: “Like losing an arm, or a limb.” 

Ruano is an active member of the church’s prayer group and volunteers during Mass. This Sunday, she was tasked with a Bible reading in front of the several hundred gathered, including her husband and daughters, who smiled watching her walk up to the lectern. 

Later, she attended a training for members hoping to work with young children, focused on keeping them safe. Ruano is part of a group of members who have committed nearly every Saturday for the next two years to walking a group of children through an intense curriculum in the Catholic faith, up to their First Communion. 

Ruano already started the rigorous curriculum with her group of students. She hopes to be around to watch them reach the rite of passage.

There’s a single Salvadoran restaurant in Milwaukee. Its owner, Concepcion Arias, says business has changed since Trump was elected. Fewer customers are coming through the doors, and even some of the regulars are asking for their meals to go. “People don’t want to be out and about,” she said. 

But Ruano and her family are here on a Sunday after church, one of their regular spots for a meal after Mass. Paola orders a plate of fries with ketchup, while Eli goes for traditional pupusas. 

On the cover of the menu is a picture of a beach in El Salvador. “That’s where my uncle lives,” Ruano says. The girls glance at the small photo of the sunny tropical landscape. When Ruano was a teenager, she moved to this coastal town to work at her uncle’s hotel, a job that helped her pay for school. The girls agree the beach looks beautiful, but then Paola chimes in: “I’m really scared I’m going to die on a plane.” She’s thinking about the prospect of ever traveling to El Salvador, a place she only knows through her parents’ stories. 

Little moments like this one remind all four that the threat of removal hangs heavily over their lives. When lunch is over, the family heads back home, and then Miguel goes out to meet with a contractor. Their home’s roof is overdue for a replacement — one of dozens of to dos that are suddenly urgent. Miguel is worried about leaving their home in less than good shape if Yessenia is removed to El Salvador.

Under the Biden administration, a pending T visa application would typically halt removal proceedings, but that guarantee no longer exists under the Trump administration. At the end of the Biden administration, the wait time for USCIS to confirm it had received a visa application averaged about four weeks. On the day of Ruano’s February check-in with ICE, the Trump administration fired 50 employees from USCIS. Within a few weeks, immigration lawyers were reporting that the wait time for visa application receipts had started to grow. When Ruano called USCIS to check on her case in early April, an agent said the average wait time was 10 weeks. When she checked in with USCIS in early May, they told her the wait had grown to four months.

Her lawyer, Marc Christopher, who has spent years working on immigration cases in the Milwaukee area, said he’s not sure why ICE hasn’t fast-tracked her deportation, but that in a multi-tiered system where so much is up to discretion, it’s not clear who will have the final say on her case.

She is due back for another appointment with ICE at the end of May. In an interview Tuesday, Ruano said she remains hopeful. She’s also started to sell household items they no longer use on Facebook Marketplace, a small step toward resignation. She hasn’t bought flights for her husband or daughters and hopes she won’t have to. The zinnia seeds are now one-inch sprouts.

Ruano’s daughters will turn 10 in early June. This year, they’re most looking forward to celebrating their birthday at school, with cupcakes in class, surrounded by their friends, their mom nearby. 

Ruano’s flight is scheduled to leave the United States the next day.

This story was originally reported by Mel Leonor Barclay of The 19th. Meet Mel and read more of her reporting on gender, politics and policy.

Fourteen years in Wisconsin. A one-way ticket to El Salvador. is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

This story was originally published by The 19th.

Jolene Baxter’s daughter, Marlee, has overcome immense challenges in her first eight years of life.

Marlee, who was born with a heart defect, has undergone four open-heart surgeries — suffering a stroke after the third. The stroke affected Marlee’s cognitive abilities — she’s in the second grade, but she cannot read yet. A mainstream class with neurotypical students felt overwhelming, so Marlee mostly attends classes with kids who also have disabilities. Her care includes physical, occupational and speech therapies.

For years, Baxter has relied on Medicaid to cover Marlee’s medical expenses while advocating for her daughter’s right to an equal education. Medicaid — which covers therapies, surgeries and medication for Marlee — and disability protections under the Department of Education have been a critical safety net for Baxter, a single mom in Oklahoma City. Now Baxter fears that proposed cuts to Medicaid and those already underway at the Department of Education, which President Donald Trump has effectively gutted, will have a disastrous impact on her daughter. 

As the Trump administration overhauls federal agencies with budget cuts, layoffs and inexperienced leadership, parents of children with complex medical needs and disabilities told The 19th they are navigating uncertainty over how the federal government plans to maintain key pillars of their kids’ lives.

Baxter, who fostered and, later, adopted Marlee, fought to give her life-saving medical treatment when the child was an infant. Since Marlee was both an abandoned child and is Kiowa, the officials overseeing her welfare weren’t invested in getting her the care she needed to survive, Baxter believes. Cuts to Medicaid would be yet another obstacle for the Baxters to overcome.  Just getting Marlee enrolled in local public schools that tried to turn her away was a battle, Baxter said. Now, the mom is gravely concerned that her daughter will be left behind due to the restructuring of the Department of Education.

“I’ll do everything I can at home, but she’ll just fall through all the cracks, and she won’t get the education that she deserves,” Baxter said.

In March, Trump signed an executive order to close the Department of Education. The Republican-controlled Congress is also considering massive funding cuts to Medicaid, the federal-state program that provides health insurance to millions of low-income Americans and is a key safety net for Americans with disabilities.

“It is 50 plus years of work to get these protections for people with disabilities that we could potentially see — maybe not fully diminished — but very deeply eroded, in a very short period of time,” said Robyn Linscott, director of education and family policy at The Arc, an organization that advocates for people with intellectual and developmental disabilities.

The Department of Education’s primary duty has been to ensure that all students have equal access to education, and it is equipped with an Office for Civil Rights to investigate schools accused of discrimination. In March, the Department of Education cut nearly half of its staff, with workers who enforce students’ civil rights hit particularly hard. Advocates worry how this could potentially impact students with disabilities, and a lawsuit filed in March began to paint a picture: newly closed regional offices, frozen investigations and new alleged politically based cases. 

The Trump administration claims that the nation’s most vulnerable will be spared from his plans for federal downsizing. 

The White House has tentative plans to assign oversight of special education to the Department of Health and Human Services. Conservative groups are calling for the Trump administration to refer civil rights complaints to the Department of Justice, an agency that has had an exodus of staff departures since Trump returned to office and changed its mission. 

Nicole Jorwic, chief program officer at Caring Across Generations, a national caregiver advocacy organization, said the Education Department’s Office for Civil Rights receives about 20,000 complaints annually. She worries about the impact of staffing cuts on handling these complaints on the families of children with disabilities.

“Some of those staff were the ones who were looking into those complaints,” she said.

It’s not just OCR complaints, she added. When she was a practicing special education attorney, Jorwic turned to reports and guidance issued by the agency. That helped local school districts, superintendents and special educators know how to implement different laws or changes.

“The lack of that federal agency to provide that clarity is also important, as well as something that we’re really worried about,” she said.

Parents and advocates are doubtful that students with disabilities won’t be impacted. Before the Department of Education was created in 1979, schools often denied these children a right to education with impunity. Dissolving it, families fear, could see a return to the period when states and schools failed to prioritize special education. 

Baxter’s daughter, Marlee, is guaranteed the right to free and appropriate schooling by the Individuals with Disabilities Education Act (IDEA) of 1975, which is enforced by the Department of Education. This federal law mandates that children like Marlee attend classes suited to their cognitive and physical abilities and that they get the services needed, such as speech, physical and occupational therapy, to attend school . Ninety-five percent of students with disabilities attend public schools, a higher share than the 90% of students overall who do — and that’s largely because of the services federal policy requires public schools to provide.

Kim Crawley, a mother to a teenager with medically complex needs, has a 25-year career as a special education teacher. As part of her training, she learned about the history of education, including how five decades ago, schools were not obligated to accommodate students’ special needs. The agency never took power away from the states, she said, but stepped in to ensure that they educated all students equitably. 

“We learn about this for a reason because we don’t want to repeat it,” Crawley said. “We don’t want to have to start over again. To think of losing everything we have gained through the Department of Education over these years is scaring not only parents but teachers. Teachers are scared because we don’t know where this is going to end up for those kids. And that’s why we go to work every day.”

Critics of closing the department and redirecting disabled children’s needs to other agencies say that it will create a bureaucratic nightmare for parents. Instead of one federal agency overseeing research on students with disabilities, state funding for special education or discrimination claims, multiple departments would be involved. Families might not know which agency to reach out to with questions and concerns.

As it is, families are sometimes unaware of the services legally available to them — a reality that has cost them time and energy in the past and could be even more complicated in the future.

Baxter, for one, pulled Marlee out of class for two years to homeschool her after the child’s kindergarten teacher retired and subsequent teachers did not know how to educate her properly, she said. It was not Baxter’s first choice to homeschool Marlee, an option unavailable to most working parents, but one she made after multiple public schools said they could not accommodate her child. 

“Our special needs are full,” Baxter said they told her. “We don’t have room for her.”

When an acquaintance told her that public schools could not lawfully refuse to enroll Marlee, Baxter finally got a local public school to admit her. But after her ordeal last year, she has no faith that the federal government will hold schools that discriminate against children with disabilities accountable if the education department is disbanded. 

“We have enough stuff to worry about (with) making sure that she gets taken care of as far as medical care,” Baxter said of parents like herself. “We don’t need to worry about what we’re going to do as far as their education.”

For some families, the potential Medicaid cuts could unravel both a child’s well-being and their family’s finances.

In Philadelphia, Meghann Luczkowski has three kids with varying levels of specialized health care needs, including a 10-year-old son who spent his first year of life in a hospital intensive care unit.

“His ability to grow and thrive and be part of our family and part of this community is dependent upon significant health care support at home,” said the former special education teacher, who now works in public health.

Luczkowski said her husband has robust health insurance for the family, but it does not cover a lot of her son’s home-based medical needs — a reality for many families whose children are on Medicaid for care related to a disability. Private insurance never paid for his ventilator to breathe, or home health nurses who allow family caregivers to sleep at night.

“It doesn’t pay for the nurse to go to school with him, to make sure that he can be at school, accessing his education with his peers,” she said. “That’s all been provided through Medicaid.”

In the first months of his second term, Trump has mostly indicated support for Medicaid when asked about his budgetary plans for other popular programs like Social Security and Medicare. But the president has also said he supports cutting fraud and waste — a description that health policy experts warn could be used to defend more expansive cuts. Congress is considering hundreds of billions of dollars in Medicaid cuts, a dollar figure that goes way beyond known cases of fraud.   

Among the considerations are work requirements and a cap on Medicaid enrollee spending. Such restrictions could have ripple effects on state education budgets and subsequent reductions in services for students with disabilities. Medicaid is one of the largest providers of funds to public school districts. It is the responsibility of school districts and states to find funding if Medicaid reimbursements are insufficient. Trump has not addressed general concerns about how such spending cuts could impact disabled children and adults.

“We know that before 1975 and the passage of IDEA, 50% of kids with disabilities were not educated at all. So we know that this is a crucial piece of legislation, and that mandate to find funding for these is really important,” said Linscott, who previously worked as a special education teacher in New York City. “But we also recognize that school districts and state budgets are so limited, which is why we want Medicaid to be able to provide as robust funding and reimbursement as they possibly can for students and for these services.”

Jorwic said federal funding for special education services is crucial, and local governments cannot make up for the lost funds. The federal government currently spends more than $15 billion annually on special education services, and Medicaid funding accounts for about $7.5 billion annually in school-based services.

Jorwic said Medicaid cuts could also translate into higher taxes on a local or state level. This month, the Democratic Kansas governor said she had asked the state’s congressional lawmakers not to cut Medicaid in large part because of the ramifications on services. 

“There’s no state, even the wealthiest states, that could afford cuts to those programs, either when it comes to education or when it comes to providing home and community-based services,” Jorwic said.

Rachael Brown is the mom of a medically complex second grader in Washington, D.C., who receives special education services and multiple therapies at his public school. 

Brown’s son, who has autism and cerebral palsy, has a rare vascular anomaly in his brain that has required multiple surgeries. He receives extensive support from Medicaid and IDEA, which are crucial for his care and education. Brown is concerned about how cuts to Medicaid would impact her son’s care and her family’s personal finances. She noted that pediatric hospitals are heavily reliant on Medicaid. If the rate of that reimbursement is cut, those hospitals’ operational costs would be on the line — impacting everything from how many doctors and other health care providers are hired to what therapies are covered for her son.

“There’s just a ripple effect for our whole community,” she said, adding: “We are relatively privileged. There’s a lot of families who aren’t. It would be much worse for families for whom Medicaid is their only insurance.” 

Brown said she lives in fear and worry about what happens next, and it’s exhausting. While she and other advocates have some experience fighting for health care rights given previous political battles, “this time, everything feels a little more cruel.”

Luczkowski planned to travel to D.C. — taking a day off from work and rearranging child care needs — to advocate for Medicaid as part of a multi-organization advocacy day. She said parents of kids with medically complex needs and disabilities often aren’t able to get out and advocate as much as they would like to, in part because of the needs of their families.

“Despite the fact that it’s an incredible hardship on my family for me to be in D.C. talking to legislators and being at rallies on the Capitol steps, that’s what me and a great number of families are doing — because our kids’ lives depend on it,” she said. “We’re hopeful that our voices will be valued, and our children will be valued.”

This story was originally reported by Barbara Rodriguez and Nadra Nittle of The 19th. Meet Barbara and Nadra and read more of their reporting on gender, politics and policy.

‘She’ll fall through the cracks’: Parents of kids with disabilities brace for new reality is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.