Trump cuts ‘horrific’ to students with disabilities

from Carolyn JonesCalMatters

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Sleep is a rare commodity in Lindsay Crane’s house. Most nights, she and her husband are up dozens of times treating their daughter’s seizures. The 16-year-old waves her arms, punches and kicks – sometimes for hours.

But that’s not the only thing keeping Crane awake these days. A Culver City mother worries how President Donald Trump’s myriad budget cuts could deprive her daughter of the 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,” Crane said. “We still have to live our daily lives, which is challenging enough, but now it seems our children’s future is at stake.”

Trump’s budget includes nearly $1 trillion in cuts to Medicaid, which funds a wide range of services for children with disabilities, including speech, occupational and physical therapy, wheelchairs, 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.

Meanwhile, at the U.S. Department of Education, Trump gutted the Office for Civil Rights, which is among the agencies that enforce the 50-year-old law giving students with disabilities the right to attend school and receive an education appropriate to their needs. Before this law was passed, students with disabilities often did not attend school at all.

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

Republicans also proposed moving the Office of Special Education out of the Department of Education and moving it to the Department of Health and Human Services. Disability rights advocates say it would bring a medical, rather than a social, perspective to special education, which they described as a major reversal of progress.

Trump has also scrapped other rights protecting people with disabilities. In September, the US Department of Transportation said this will not impose a rule which requires airlines to reimburse passengers for damaged or lost wheelchairs. Trump has also repeatedly used the word “backward”, widely considered an insult, anxious defenders who say it shows a lack of respect and understanding of historical discrimination against people with disabilities. It’s all left some wondering if the administration plans more cuts to hard-won rights protecting people with disabilities.

Fewer therapists, less equipment

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 nonprofit organizations in California that coordinate services for people with disabilities. The aim of the regional centers is to help people with disabilities to live as independently as possible.

More than a third of the regional centers’ funding comes from Medicaid, which faces severe cuts in Trump’s budget. The money runs out at the end of January and it is 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 uncertainty in the state budgetit is not likely that the state will be able to make up for the loss of Medicaid funding, and schools will have to reduce their services.

An uncertain future

For Lela Coppedge, whose teenage son has cerebral palsy, the worst part is the uncertainty. She knows layoffs are coming, but she doesn’t know when or what they will involve.

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

Coppedge’s son, Jack, is a 16-year-old high school student who excels in algebra and physics. He likes 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 will look at his mother’s right hand to indicate yes and her left hand to indicate no.

Coppage and her husband rely on a nurse who comes in 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 such as physical therapy. Although Coppage and her husband work and have high-quality private health insurance, they would not be able to afford Jack’s care without government help.

They also rely on the local regional center, which they assume will help Jack after he graduates from high school so that he can stay at home, continue to improve his skills and generally live as independently as possible. If that funding goes away, Coppedage worries that Jack will one day end up in a facility where people don’t know him, don’t know how to interact with him, and don’t care about him.

“It feels like we’re going backwards,” Coppage said. “Half the time I’m burying my head in the sand because I’m just trying to get by. The rest of the time I’m worried that (the federal government) views people like Jack as medical problems rather than unique people who want to have full, happy lives. I feel like that’s being lost.”

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

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

Decades of progress along the line

Karma Quick-Panvala, an advocate for the nonprofit Human Rights and Education Fund, said she worries about rolling back decades of hard-won progress by the disability rights community.

The Law on the Education of Persons with Disabilitiesthe 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. Eliminating special education would be a devastating blow to the disability community — not only because services could be limited, but also from a philosophical standpoint, Quick-Panvala said.

At the Department of Education, special education is under the purview of education experts who promote optimal ways to educate students with disabilities so that they can learn, graduate from high school, and ideally go on to productive lives. At the Department of Health and Human Services, special education will no longer be overseen by educators but by those in the medical field, where they are more likely to “view disabilities as something to be cured or separated and set aside,” Quick-Panvala said.

“The disability rights community has worked so hard and given so much to ensure that people with disabilities have the right to a meaningful education so that they can have gainful employment opportunities and participate in the world,” Quick-Panvala said. “The idea is for them to not just attend school, but to actually learn and thrive.”

For now, Wright, Quick-Panvala and other advocates are reminding families that federal funding may be shrinking, but the laws remain unchanged. Students are still entitled under federal law to the services described in their individual education plans, regardless of whether there is money to pay. 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, DC

An imperfect but successful routine

Those assurances are little comfort to Crane, whose daughter Lena will rely on government support for the rest of her life. Born seven weeks prematurely, Lena has cerebral palsy, epilepsy, 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 is up all night, Lena insists on going to school and making the most of every day.

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

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

“Our whole life is about teaching her self-defense so she can have the most independent life possible,” Crane 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 culture, laws and the education system to make sure disabled people can make their own choices in life. We’re absolutely terrified to lose that.”

This article was originally published on CalMatters and is republished under Creative Commons Attribution-NonCommercial-No Derivatives license.