This story was originally published by . for their newsletters.

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

But these days, that鈥檚 not the only thing keeping Crain awake. The Culver City mother worries about how President Donald Trump鈥檚 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.

鈥淓very family I know is terrified right now,鈥� Crain said. 鈥淲e still have to live our everyday lives, which are challenging enough, but now it feels like our kids鈥� futures are at stake.鈥�

Trump鈥檚 budget includes 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 鈥� in California, nearly 1 million 鈥� receive at least some services through Medicaid.

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鈥檛 attend school at all.

鈥淲e have a delicate web of services that, combined, support a whole child, a whole family,鈥� 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. 鈥淪o when the basic foundational structure is upended, like Medicaid, for example, it鈥檚 not just one cut from a knife. It鈥檚 multiple.鈥�

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 鈥� rather than a social 鈥� 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 that requires airlines to reimburse passengers for damaged or lost wheelchairs. Trump has also repeatedly used the word 鈥�,鈥� widely considered a slur, who say it shows a lack of respect and understanding of the historical discrimination against people with disabilities. It鈥檚 all 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鈥� funding comes from Medicaid, which is facing deep cuts under Trump鈥檚 budget. The money runs out at the end of January, and it鈥檚 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 , it鈥檚 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鈥檛 know when or what they鈥檒l include.

鈥淚 go down this rabbit hole of worst-case scenarios,鈥� said Coppedge, who lives in the Canoga Park neighborhood in Los Angeles. 鈥淏efore this happened, I felt there was a clear path for my son. Now that path is going away, and it鈥檚 terrifying.鈥�

Coppedge鈥檚 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鈥檒l look at his mom鈥檚 right hand to indicate 鈥測es,鈥� her left hand for 鈥渘o.鈥�

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鈥檚 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鈥檛 know him, don鈥檛 know how to communicate with him and don’t care about him.

鈥淚t feels like we鈥檙e going backward,鈥� Coppedge said. 鈥淗alf the time, I put my head in the sand because I鈥檓 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鈥檚 getting lost.鈥�

The current uncertainty is stressful, but it鈥檚 even harder for families who are immigrants, Wright said. Those families are less likely to stand up for services they鈥檙e 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, .

鈥淭hat鈥檚 the other piece to all this 鈥� how it鈥檚 affecting immigrant families,鈥� Wright said. 鈥淚t鈥檚 a whole other level of anxiety and fear.鈥�

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鈥� worth of progress that was hard-won by the disability rights community. 

The , 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 鈥� 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鈥檙e more likely to 鈥渓ook at disability as something to be cured or segregated and set aside,鈥� Quick-Panwala said.

鈥淭he 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,鈥� Quick-Panwala said. 鈥淭he idea is that they wouldn鈥檛 just be present at school, but they would actually learn and thrive.鈥�

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鈥檚 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鈥� 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.

鈥淥ur entire lives are about teaching her self-advocacy, so she can have the most independent life possible,鈥� Crain said. 鈥淛ust because you need support doesn鈥檛 mean you can鈥檛 have a say in your life. There鈥檚 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鈥檙e absolutely terrified of losing that.鈥�

This article was and was republished under the license.

The nation鈥檚 second-largest teachers union was joined by its Maryland affiliate in the suit, filed in a Baltimore district court. It targets guidance from the Department of Education鈥檚 Office for Civil Rights in a Feb. 14 鈥淒ear Colleague鈥� letter sent to school officials across the country.

threatens to deny federal funding to any school that considers race in admissions, hirings, financial aid, scholarships, discipline policy and 鈥渁ll other aspects of student, academic and campus life.鈥� 

鈥淭he Department will no longer tolerate the overt and covert racial discrimination that

has become widespread in this Nation鈥檚 educational institutions,鈥� the letter says. 鈥淭he law is clear: treating students differently on the basis of race to achieve nebulous goals such as diversity, racial balancing, social justice or equity is illegal.鈥�

The lawsuit argues that the order鈥檚 vague language implies that all schools should get rid of all programming related to race and is actually an attempt at rewriting civil rights law.

The letter says all educational institutions must 鈥渃ease all efforts to circumvent prohibitions on the use of race鈥� and stop reliance on third-party agencies that are being used to 鈥渃ircumvent prohibited uses of race.鈥� Schools have until Feb. 28 to comply.

鈥淭he activities and programs that are described as unlawful include: classroom instruction

that confronts difficult and uncomfortable subjects and imparts critical thinking skills,鈥� the lawsuit says. 鈥淥rientations and training that equip students with the communication skills and tools to navigate complex social dynamics 鈥� and support services and extracurricular activities.鈥�

In the suit, the AFT argues that the Trump administration and the department misrepresented the 1964 Civil Rights Act, which bars discrimination on the basis of race in federally funded programs. The letter also leans on the 2023 Supreme Court decision in Students for Fair Admissions v. Harvard 鈥� which outlawed race in college admissions 鈥� and argues that the ruling applies more broadly.

鈥淭his Letter is an unlawful attempt by the Department to impose this administration鈥檚 particular views of how schools should operate as if it were the law,鈥� the suit says.

Earlier this week, a different division of the Maryland district court granted a temporary restraining order in a separate lawsuit filed by the union. That one alleges that the department illegally gave Elon Musk鈥檚 Department of Government Efficiency access to millions of private and sensitive records.