Little Lobbyists in the News

Members of Little Lobbyists are regularly spotted in the news sharing their stories and showing readers and viewers the faces of medically complex children who rely on Medicaid, along with their families.

Recent appearances include:

The New York Times: Disabled Americans Fear What Medicaid Cuts Could Do to Them

Mother Alison Chandra, who lives in Utah with her son Ethan and his sister Zoe, told the Times:

Giving up is not something that parents of medically complex and disabled children know how to do. I just don’t understand why they’re making it harder.

Chandra also provides private-duty nursing to medically complex children that enables them to attend school and live in their communities. Her son Ethan has Heterotaxy, a rare congenital condition that causes his internal organs to duplicated or in the wrong position.

The American Prospect: Families Steel for Fight After GOP Health Care Cuts

Mother Stacy Staggs, who lives in North Carolina with her husband Shane and twin daughters Emma and Sara, told The American Prospect:

It’s not an exaggeration to say that every minute and every aspect of Emma’s life is happening because of her Medicaid coverage. And the other side of that coin is it all goes away in a second if she loses Medicaid.

Emma and Sara were born prematurely at 27 weeks after Stacy experienced life-threatening pregnancy complications. Emma needs 24/7 airway monitoring and receives nutrition via a G-tube, while Sara has epilepsy and developmental disabilities.

Discussing the prescription formula Emma relies upon for nutrition, Stacy told USA Today that:

If we get to a place where we're no longer eligible, I can start a timer on how much longer Emma will be alive. That’s the end of it. It’s not abstract. It’s not hyperbole. It’s the only thing that she can eat. There isn’t any substitute.

Read more of Stacy's story in "They don't need Medicaid. But their kids do."

Marketplace: Advocates warn that Medicaid cuts in the big budget law put home-based health care at risk

Mother (and Little Lobbyists Community Engagement Coordinator) Victoria Schiano, who lives in Pennsylvania with her nine-year-old son Cole, told Marketplace:

If this ends up being implemented, this could make the difference of Cole being able to stay home with me. We might be in a position where he would have to be surrendered to a hospital.

Cole has mitochondrial disease and requires care from 36 specialists. The costs for his medical supplies alone approach $17,000 weekly.