Pennsylvanians with Disabilities Question GOP's Proposed Medicaid Cuts

Josie Badger doesn't know where she would be without Medicaid.

"I use a ventilator, power wheelchair," said Badger, a disability rights advocate who lives in western Pennsylvania's Lawrence County. "I have 24-hour care. I could not get out of bed every day without that care, let alone work, have a business, be a foster mom, own a home, any of that. So, without that coverage, Josie would not be here."

Badger was born with a physical disability called congenital myasthenic syndrome, which leaves an individual with weakened muscles, and she spent months on end in the hospital as a child. While she was growing up, Badger's parents repeatedly considered getting a divorce solely so they could each have their own private insurance plan that Badger could use.

"Fortunately, that didn't happen," Badger said of her parents divorcing. "Now, as an adult, I receive waiver through Medicaid home-based services, and it is my lifeline."

Now, however, Badger is fighting to keep that lifeline.

In an effort to pay for President Donald Trump's tax cuts for the wealthiest Americans, House Republicans on May 22 passed legislation, which they named the "One Big Beautiful Bill Act," that would carve about $700 billion from Medicaid, add approximately $3.3 trillion to the national debt over the next decade, and cause about 13.7 million people to lose health care coverage nationwide. The bill passed the House by a vote of 215-214, with all but five Republicans voting for it and no Democratic support. Every Republican House member from Pennsylvania supported the bill, which is now before the Senate. Trump is expected to sign the bill if it passes the Senate. If the Senate changes anything in the House bill, the two chambers must work out those differences and vote on the final legislation before sending it to the president.

In Pennsylvania, where close to one-quarter of the population is enrolled in Medicaid, the federal Medicaid cuts could strip health coverage from hundreds of thousands of residents, including people with disabilities, individuals in nursing homes, and children. About 750,000 people with disabilities use Medicaid in Pennsylvania.

"We're at a place where we need to become very public about what's going on, because I don't think enough people realize that these cuts are going to affect them," Badger said. "They don't realize that Medicaid pays for services in schools. They don't realize that the Affordable Care Act that they're buying, those services could go away."

'I become paralyzed with the fear'

For Badger, a loss of Medicaid or reduced benefits would be life-changing. Currently, she is able to afford six nurses and three home-care attendants who provide around-the-clock services through her Medicaid plan. It's this kind of care that keeps her out of a nursing home and living in her own house with her family, running her own consulting firm, which works to empower people with disabilities, and generally living a life she loves.

As Republicans push for the largest cuts to Medicaid in the program's 60-year history, Badger is trying to focus less on how her own personal life would be affected by the GOP's plan and more on galvanizing people to fight for the public health insurance program that covers about 80 million people nationally, or about 20% of the country's population.

"For me, I can't think a lot about it in terms of my own life because I become paralyzed with the fear, with the anxiety, and so I have to go and activate other folks to get involved," Badger said. "The community is really what keeps me going and realizing why it's important that there's hope. And so a lot of my work time I've been donating towards trying to elevate people's voices for a lot of issues, not just Medicaid. I'm not even sure I can process it on a personal level."

Should the House bill be signed into law, Badger said, she expects her home caregivers could lose their jobs, or leave them, because of a lack of funding. That, then, could leave older people and people with disabilities with no option but to go into a nursing home.

"Nursing homes, historically, have been last resort, even though they are one of the most expensive options, and so I think that there's going to be a come-to-Jesus moment when we start seeing millions of folks with disabilities and older adults needing care not being able to get it and ending up in nursing homes that are also underfunded," Badger said.

Losing home- and community-based services

Jennifer Garman, the president of Disability Rights Pennsylvania, is also deeply worried about cuts to home- and community-based services that are funded by Medicaid, including housing and employment support. Through those services, people with disabilities are able to live in their own homes as well as work.

"We already also have a waiting list for home- and community-based services for people with intellectual disabilities," Garman said. "And so we would also be concerned that waiting lists will grow for services and that people will have to wait a longer time than they're already waiting."

"It will just be a tremendous strain on the commonwealth and really deeply impact the community and people accessing the services that they need," Garman continued.

Cutting or decreasing those services would be disastrous, said Christie Cyktor, the youth leadership and training coordinator for western Pennsylvania at the PEAL Center. The PEAL Center works with youth with disabilities and their families to help them advocate for themselves in a variety of settings, such as school or the workplace.

Cyktor, who has a congenital disability that affects her joints and has used a power wheelchair since the age of 8, explained the youth she works with want to go to college, be in the workforce and live independently. In order for them to do that, they need to have a direct-care worker who helps them with various tasks, depending on their needs, such as dressing themselves, she explained.

Cutting those services would harm people who want to contribute to their families, communities and economy, Cyktor said.

"They want to contribute to the workforce and economy and give back that way, but they're like, How am I going to afford this if I can't fund a direct-care worker?" Cyktor said.

Cyktor doesn't currently have a direct-care worker, but she did in college, and she said that support allowed her to graduate.

"There's no way that I would have been able to go live independently at college if I did not have this woman," Cyktor said. "She was the sweetest woman and would come in the morning, help me get up, get dressed for the day, get me set up, and I could go do things independently during the day. And then she'd come back at night, and, same thing, sort of helped me get ready for the night and everything. And that enabled me to go get my degree."

Support at school

Medicaid also funds school-based services, which is the only way that many school districts are able to afford means of support for students with disabilities, such as occupational therapy, nurses, mental health care, and specialized equipment such as wheelchairs.

Cuts to those services could have lifelong consequences for students, Cyktor said. In addition to working at the PEAL Center, Cyktor also provides virtual occupational therapy for students across Pennsylvania.

"So many school-based services are funded by Medicaid, and so it's already something I've sort of been thinking about for these families who I see all across Pennsylvania, in very rural areas, and really the cyber platform is maybe the only time they have access to occupational therapy, any other service," Cyktor said. "So if that gets cut, these kids are going to be losing out on these vital services and doing this really important development at such a young age."

Cyktor works with students in kindergarten through 12th grade on fine motor skills, such as handwriting and typing, as well as executive functioning skills like daily activity scheduling. Without those skills, it will be difficult to enter the workforce, she emphasized.

"If they're cut now, the future impacts are going to be huge for them," she said.