PHILADELPHIA (CBS/AP) — Advocates for people with disabilities declared Thursday a National Day of Action to spread the word about proposed cuts to Medicaid.

One New Jersey woman told CBS3 health reporter Stephanie Stahl why it’s so important to her family to keep kids covered.

Snack time is complicated for Stephanie Pratico. Her two children, John and Sara, have Down Syndrome and a litany of health complications.

Eighteen-year-old Sara has a feeding tube that needs constant attention.

In spite of their physical and intellectual challenges, the New Jersey siblings are thriving and happy, and 23-year-old John has a job.

Since they were born, Sara and John have had services paid for by Medicaid. It is coverage they get not because they’re poor, but because they have disabilities. Medicaid covers not just people who are economically disadvantaged, but also millions of adults and children with disabilities.

Stephanie said she and her husband “both had decent jobs, middle-class family, doing our share, rolling up our sleeves, not looking for a handout. Needed Medicaid because we were handed something that we had no idea how we would have financially managed had we not had that.”

Medicaid pays for things like physical and speech therapy, hearing aids, and caregivers for when Stephanie goes to work at CHOP, where she helps other families dealing with developmental disabilities.

“I have never been more worried,” Stephanie said. That’s because many Republicans want to cut what they call inefficient Medicaid spending. The Senate health care bill revealed Thursday would end the extra funding states get through expanded Medicaid in 2020, and place a limit on overall federal spending for the program in the future.

“This is a lifeline for folks with intellectual and developmental disabilities, for kids with chronic medical conditions,” Stephanie said. “These families won’t survive. We are potentially taking away the past 50 years of progress that we’ve made around valuing these individual lives and what they bring, in spite of their challenges, and we’re ready to wipe that away.”

Many medical groups have issued statements about the importance of Medicaid. The American Academy of Pediatrics says, in part, Medicaid is “an empowerment program” that allows a college student with cerebral palsy to live independently, provides wheelchairs for toddlers, chemo for grandparents, and treatment for people addicted to drugs.

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via 215Today.