For Stephanie Pratico and children Sara, 18, and John, 23, both born with Down syndrome, the Senate's proposal to cut Medicaid and roll back its funding of many states' programs is not just politics.
Medicaid benefits the poor. But it is also a lifeline for middle-class families with extraordinary needs.
For Pratico's family and the many others affected by developmental disabilities and chronic conditions, Medicaid helps pay for vital services, support, and therapies that private health insurance does not cover and that even decent salaries are hard-pressed to absorb.
"People have the misconception Medicaid is a handout. That's not the case at all," said Pratico, a program manager for Children's Hospital of Philadelphia. "Without the funds to support these services, you're talking about a landslide — going back 30, 40 years, to the way things used to be."
For her son, John Rosati, a high school graduate who works five days a week as head dishwasher in an Italian market in their Mercer County, N.J., community, Medicaid cuts could put an end to the therapy, support services, and hearing aids that help him hold a job. His work is a source of pride and joy, and the thought of losing it upsets him.
"He understands," said Pratico. "His exact words are, 'How could they do that to me?'"
For Sara Rosati, who requires a feeding tube and has many health issues, including immune deficiency and lung disorders, Medicaid helps the family meet her needs.
Stephanie Pratico, who advocates for her children and others like them as chairwoman of the New Jersey Council on Developmental Disabilities, worries about those who have fewer resources than her family does. She is afraid the decision-makers in Washington don't understand the impact that their actions could have.
"This is the first time the fear is paralyzing me, because I'm not sure they're hearing us," she said. "I'm not sure they understand the catastrophic effect this would have."