What The Hell America!

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 percent 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 both unravel 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 that 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 percent 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 week, 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.”

On Wednesday, 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.”