A New Jersey family fears that proposed changes to Medicaid could drastically impact their lives and the well-being of their loved one.
Recently, the Senate passed a GOP bill that, while not explicitly outlining reductions to Medicaid, has raised alarms among Democratic lawmakers. They warn that the legislation could significantly shrink federal funding for the program, which provides critical health care services to low-income families, individuals with disabilities, and other vulnerable populations.
“It’s really hard to always fight for someone who doesn’t have a voice”
For 24-year-old Amelia Hannon, Medicaid is more than just a safety net—it’s a lifeline. Since childhood, Amelia has been living with a rare genetic disorder that requires around-the-clock care.
“Amelia was diagnosed with ring chromosome 22 at the age of 2, and then she has a syndrome called Phelan-McDermid syndrome,” said her mother, Kristin Hannon. “She needs help and caregiving 24/7.”
For years, Kristin has fought tirelessly to ensure that Amelia receives the care she needs. The journey has not been easy.
“It’s really hard to always fight for someone who doesn’t have a voice,” she said.
Today, Amelia lives in a group home at Universal Institute (UIRehab) in Livingston, New Jersey. There, she has access to specialized treatment, structured daily programs, and sensory rooms designed to support her development and well-being.
“I know she’s happy. I know that she is fulfilled. I know she’s active. I know that she’s supported,” Kristin said. “She’s with her peers. She’s with her friends. She’s with roommates. I love the day program because there’s somewhere for her to go every single day.”
The Threat of Medicaid Cuts
Kristin fears all of that could change if funding is reduced. Medicaid cuts could put vital programs at risk, threatening the very support systems that allow individuals like Amelia to thrive.
Adam Steinberg, president and CEO of UIRehab, warns that without adequate Medicaid funding, facilities like his would be forced to make difficult decisions.
“We would need to limit the amount of individuals that we provide services to,” he explained.
That could mean individuals with special needs, like Amelia, might have no choice but to move into developmental centers or nursing homes—facilities that often lack the specialized care and community engagement they currently receive.
“We’re dealing with human lives here”
For families like the Hannons, Medicaid isn’t just about financial assistance—it’s about ensuring dignity, independence, and quality of life.
Kristin hopes lawmakers will recognize the importance of preserving, and even expanding, Medicaid funding to better support those who rely on it.
“Look at our faces. Just, please, you know? Think and try to help,” she urged.
Steinberg echoed her concerns, emphasizing the impact that service providers like UIRehab have on their communities.
“I think the most important takeaway is that we’re dealing with human beings, we’re dealing with human lives here. And without providers like us in the community, these individuals would not be able to access and have full lives in the community,” he said.
For now, families like the Hannons wait anxiously, hoping that their voices will be heard before it’s too late.
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