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Sleep is a rare commodity at Lindsay Crain’s house. Most nights, she and her husband are up dozens of times, tending to their daughter’s seizures. The 16-year-old flails her arms, thrashes and kicks — sometimes for hours.

But these days, that’s not the only thing keeping Crain awake. The Culver City mother worries about how President Donald Trump’s myriad budget cuts could strip their daughter of services she needs to go to school, live at home and enjoy a degree of independence that would have been impossible a generation ago.

“Every family I know is terrified right now,” Crain said. “We still have to live our everyday lives, which are challenging enough, but now it feels like our kids’ futures are at stake.”

Trump’s budget includes nearly $1 trillion in cuts to Medicaid, which funds a wide swath of services to disabled children, including speech, occupational and physical therapy, wheelchairs, in-home aides and medical care. All children with physical, developmental or cognitive disabilities – in California, nearly 1 million – receive at least some services through Medicaid.

Office of Civil Rights Gutted

Meanwhile, at the U.S. Department of Education, Trump has gutted the Office of Civil Rights, which is among the agencies that enforce the 50-year-old law granting students with disabilities the right to attend school and receive an education appropriate to their needs. Before that law was enacted, students with disabilities often didn’t attend school at all.

“We have a delicate web of services that, combined, support a whole child, a whole family,” said Kristin Wright, executive director of inclusive practices and systems at the Sacramento County Office of Education and the former California state director of special education. “So when the basic foundational structure is upended, like Medicaid, for example, it’s not just one cut from a knife. It’s multiple.”

Republicans have also suggested moving the office of special education out of the Department of Education altogether and moving it to the Department of Health and Human Services. Disability rights advocates say that would bring a medical – rather than a social – lens to special education, which they described as a major reversal of progress.

Trump has chipped away at other rights protecting people with disabilities, as well. In September, the U.S. Department of Transportation said it would not enforce a rule that requires airlines to reimburse passengers for damaged or lost wheelchairs. Trump has also repeatedly used the word “retarded,” widely considered a slur, alarming advocates who say it shows a lack of respect and understanding of the historical discrimination against people with disabilities. It’s all left some wondering if the administration plans more cuts to hard-fought rights protecting people with disabilities.

Fewer Therapists, Less Equipment

The Medicaid cuts may have the most immediate effect. People with developmental disabilities typically receive therapy, home visits from aides, equipment and other services through regional centers, a network of 21 mostly government-funded nonprofits in California that coordinate services for people with disabilities. The goal of regional centers is to help people with disabilities live as independently as possible.

More than a third of regional centers’ funding comes from Medicaid, which is facing deep cuts under Trump’s budget. The money runs out at the end of January, and it’s unclear what services will be cut.

Schools also rely on Medicaid to pay for therapists, equipment, vision and hearing tests and other services that benefit all students, not just those with disabilities. In light of state budget uncertainty, it’s not likely the state could backfill the loss of Medicaid funding, and schools would have to pare down their services.

Uncertain Futures

For Lelah Coppedge, whose teenage son has cerebral palsy, the worst part is the uncertainty. She knows cuts are coming, but she doesn’t know when or what they’ll include.

“I go down this rabbit hole of worst-case scenarios,” said Coppedge, who lives in the Canoga Park neighborhood in Los Angeles. “Before this happened, I felt there was a clear path for my son. Now that path is going away, and it’s terrifying.”

Coppedge’s son, Jack, is a 16-year-old high school student who excels at algebra and physics. He loves video games and has a wide circle of friends at school. He uses a wheelchair and struggles with speech, communicating mostly through eye movements. He’ll look at his mom’s right hand to indicate “yes,” her left hand for “no.”

Coppedge and her husband rely on a nurse who comes four days a week to help Jack get dressed, get ready for bed and do other basic activities. Medicaid pays for the nurse, as well as other services like physical therapy. Even though Coppedge and her husband both work and have high-quality private health insurance, they could not afford Jack’s care without help from the government.

They also rely on the local regional center, which they assumed would help Jack after he graduates from high school, so he can remain at home, continue to hone his skills and generally live as independently as possible. If that funding vanishes, Coppedage worries Jack will someday end up in a facility where people don’t know him, don’t know how to communicate with him and don’t care about him.

“It feels like we’re going backward,” Coppedge said. “Half the time, I put my head in the sand because I’m just trying to manage the day-to-day. The rest of the time I worry that (the federal government) is looking at people like Jack as medical problems, not as unique people who want to have full, happy lives. It feels like that’s getting lost.”

The current uncertainty is stressful, but it’s even harder for families who are immigrants, Wright said. Those families are less likely to stand up for services they’re entitled to and are facing the extra fear of deportation. English learners, as well as low-income children, are disproportionately represented among students in special education, according to state data.

“That’s the other piece to all this — how it’s affecting immigrant families,” Wright said. “It’s a whole other level of anxiety and fear.”

Decades of Progress on the Line

Karma Quick-Panwala, an advocate at the nonprofit Disability Rights Education and Defense Fund, said she worries about the rollback of decades’ worth of progress that was hard-won by the disability rights community.

The Individuals with Disabilities Education Act, the 1975 law that created special education, actually predates the federal Department of Education. In fact, Congress created the department in part to oversee special education. Removing special ed would be a devastating blow to the disability community — not just because services might be curtailed, but philosophically, as well, Quick-Panwala said.

In the Department of Education, special education is under the purview of education experts who promote optimal ways to educate students with disabilities, so they can learn, graduate from high school and ideally go on to productive lives. In the Department of Health and Human Services, special education would no longer be overseen by educators but by those in the medical field, where they’re more likely to “look at disability as something to be cured or segregated and set aside,” Quick-Panwala said.

“The disability rights community has worked so hard and gave so much to make sure people with disabilities had a right to a meaningful education, so they could have gainful employment opportunities and participate in the world,” Quick-Panwala said. “The idea is that they wouldn’t just be present at school, but they would actually learn and thrive.”

For the time being, Wright, Quick-Panwala and other advocates are reminding families that federal funding might be shrinking, but the laws remain unchanged. Students are still entitled under federal law to the services outlined in their individual education plans, regardless of whether there’s money to pay for it. The funding will have to come from somewhere, at least for now, even if that means cutting it from another program. And California is unlikely to roll back its own special education protections, regardless of what happens in Washington, D.C.

An Imperfect but Successful Routine

Those reassurances are scant comfort to Crain, whose daughter Lena will rely on government support her entire life. Born seven weeks prematurely, Lena has cerebral palsy, epilepsy, a cognitive impairment and is on the deaf-blind spectrum. But she has a 100-watt smile and a relentless spirit, Crain said. Even after the whole family has been up all night, Lena insists on going to school and getting the most out of every day.

Funny and assertive, she has a few close friends and, like many teenagers, plenty of opinions about her parents. She loves her English teacher and spends most of her day in regular classrooms with help from an aide. Her favorite book is about Malala Yousafzai, the Pakistani activist who won a Nobel Peace Prize for fighting for girls’ right to an education.

Between school and home visits from aides and after-school therapists, Crain feels the family has pieced together an imperfect but mostly successful routine for Lena.

“Our entire lives are about teaching her self-advocacy, so she can have the most independent life possible,” Crain said. “Just because you need support doesn’t mean you can’t have a say in your life. There’s been so much work around the culture and the laws and the education system to make sure disabled people can make their own choices in life. We’re absolutely terrified of losing that.”

This article was originally published on CalMatters and was republished under the Creative Commons Attribution-NonCommercial-NoDerivatives license.