Grace Robinson studies psychology at Northampton Community College. She wants to become a behavioral therapist and work with children with autism and intellectual disabilities.
The 31-year-old lives with a mitochondrial disease that impacts her organ systems.
“In 2015, I became critically ill. I started spending large chunks of time in the hospital. I would go into metabolic crisis often. I've had brain lesions, strokes. My GI tract failed. I ended up depending on a central line and getting nutrition through my chest. I spent years in a wheelchair. My heart failed, and I've had dozens of surgeries over the years,” said Robinson, who lives in Cresco, Monroe County.
She takes more than 20 medications daily and regularly sees a specialist for her condition. Medicaid covers most of her health care costs.
Robinson is one of nearly 3 million Pennsylvanians and more than 66 million Americans covered by Medicaid that now face major changes to the program in just a few months.
She said she’s concerned about the Medicaid changes coming in January — not that she’ll no longer be eligible, but that more frequent eligibility checks will become burdensome as someone living with a disability and chronic illness.
“They're saying I won't lose services if I reapply and stick to these rules, but it's a lot more work. I've fallen through the cracks before, and I'm afraid it will happen again,” Robinson said.
The changes: When, what and why
The Medicaid changes, required under President Donald Trump’s 2025 budget — commonly known as the One Big Beautiful Bill Act — will take effect on Jan. 1, 2027. Under the new requirements, Medicaid recipients will be required to meet an 80-hour-per-month work requirement that can be fulfilled through work, volunteer, school or a work training program.
There are exemptions for certain groups including parents/caretakers of a child under 14 or individual with a disability, pregnant people or those receiving postpartum coverage through Medicaid, members of American Indian tribes, veterans with a VA-determined disability, those in treatment for substance use disorder, those recently out of incarceration, medically frail or those with special medical needs, which encompasses both physical and intellectual disabilities and more.
Recipients also will need to comply with more frequent eligibility checks, which will be every six months instead of annually.
The Congressional Budget Office (CBO) estimates the changes will reduce federal Medicaid spending by more than $900 billion over the next decade and that the work requirements will account for about $326 billion of those spending cuts. CBO also estimates that the number of people who are uninsured will increase by 10 million in 2034. And coverage loss from Medicaid work requirements account for more than half of the increase in the number of uninsured.
In rural areas, nonpartisan health policy research, polling and news organization KFF found that federal Medicaid spending is expected to decline by $137 billion over 10 years, which is more than the $50 billion set aside for the Rural Health Transformation Fund, also created by the One Big Beautiful Bill Act. KFF estimates that Pennsylvania will lose $5.5 billion in that same time period.
U.S. Rep. Rob Bresnahan, R-Luzerne County, voted in favor of the One Big Beautiful Bill Act.
“The work requirement updates made to Medicaid in the Working Families Tax Cuts were made to ensure those who need Medicaid will continue to receive it, and those who are taking advantage of the system do not. The eligibility checks, which were changed from once a year to twice a year, are to guarantee states have systems in place to keep accurate rolls of participants, taking the financial burden off taxpayers who contribute their tax dollars to the program,” said Bresnahan spokesperson Hannah Pope.
Pope said anyone who believes they should be exempt from work requirements or need further help can reach out to Bresnahan’s office at 570-763-6120.
How is the state preparing?
State Human Services Sec. Dr. Val Arkoosh said the state is currently updating its Medicaid system in preparation for the new year and upcoming changes. And that besides some federal funding for IT upgrades, most administrative costs will be covered by Pennsylvania taxpayer dollars.
“We are spending just hundreds of hours and millions of dollars on creating paperwork programs to make sure that folks don't get disconnected from their benefits because of some bureaucratic red tape,” Arkoosh said.
Arkoosh said the state’s goal is to make the changes as easy to navigate for Pennsylvanians as possible.
“We have agencies all across the state, nonprofits that can help you get 10 more hours of volunteer work, and we'll help you document that. Folks are standing up across the Commonwealth to help make sure that people don't lose access to their healthcare,” she said.
The state started to send outreach via mail, texts and robocalls about the changes to recipients in August. The outreach includes how to meet requirements and situations that could exempt an individual from work requirements.
Arkoosh encouraged Pennsylvanians to answer the phone when the state’s calling and open mail from the state’s Department of Human Services to stay informed about the changes to come.
Pennsylvanians brace for Medicaid changes
Robinson expressed frustration over the more frequent eligibility checks.
“People who are disabled get caught in the crossfire of policies all the time. It makes me so mad that I've proved my disability so many times, and now I'm just going to have to do it again and again,” she said.
Robinson said she’s grateful to her family for helping her to stay on top of her mail, even when her health gets in the way. But she’s worried about people without that support system.
“It's also very frustrating because there's going to be times in my life where I am very sick and will have a really hard time applying for these programs. And in the past, there [were] times where I spent two months in the hospital,” she said.
Krysten Xanthis, a 36-year-old Scranton resident, receives Medicaid benefits. She makes $13 an hour as a home health aide, takes care of her mother and lives with various health issues, including asthma and Crohn’s Disease. She also underwent various surgeries on both legs.
“I was always thankful that I had Medicaid because you know if I didn't have Medicaid, I would have had the surgeries and I wouldn't be able to work at all because I won't be able to walk,” she said.
Xanthis said the Medicaid changes add to stereotypes about the program’s recipients.
“I'm trying to get people to understand that, like you know, being on Medicaid doesn't mean that the people are not working,” she said.
She believes she’ll still be eligible with the new work requirements, but said the updates to the program add a new level of anxiety.
“I always have the fear of what's going to come next. I know you shouldn't think that way, but I do because I never know what they're gonna tell me,” she said.
For recipients like Robinson and Xanthis, the state wants to make sure they retain their benefits and have a smooth transition into this new era of Medicaid eligibility.
“I want Pennsylvanians to know that we are doing everything in our power to keep people connected to their healthcare through Medicaid, but we need their partnership in this work, and so first and foremost, we need everybody to read their mail,” Arkoosh said.
