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A Rhode Island woman's struggle to get her young daughter Medicaid coverage


If you have children with mental health problems, one of the most reliable ways to get care is through government insurance such as Medicaid. But qualifying for it can require making some tough choices. That was the case for one Rhode Island woman who struggles with getting care for Rose, her 9-year-old. NPR's Yuki Noguchi has her story as part of our ongoing series on medical debt with Kaiser Health News.

YUKI NOGUCHI, BYLINE: Rose is the youngest of Colleen O'Donnell's three children.

COLLEEN O'DONNELL: She's, like, really funny and beautiful and creative.

NOGUCHI: Several years ago, Rose started acting aggressively. It was a sign of a worsening mood disorder.

O'DONNELL: I couldn't get her on the bus to go to school. That was a real struggle. And then what do you do when you have a kid that won't go to school that no one else can take care of because it's unsafe?

NOGUCHI: Rose had two forms of private insurance through each parent's job, but neither covered her care. Only Medicaid would pay for the care Rose needed. So O'Donnell, a single mother, quit her job as a school nurse to cut her income in order to qualify for public insurance.

O'DONNELL: Oh, my God. Having Medicaid has made everything easier. I don't have co-pays. I don't have to wait for the insurances to fight it out to see who's going to pay for what. I don't have to worry about getting collections notice. I don't - you know, the stress level of relief there is huge.

NOGUCHI: But it came at a serious cost. Without a job, O'Donnell took out a $22,000 second mortgage to pay for living expenses.

O'DONNELL: Qualifying for Medicaid means you live right around the poverty level, right? Which means that I'm also not generating any sort of wealth. I'm not contributing to my retirement because I'm barely able to, at that point, make ends meet.

NOGUCHI: Parents are making huge financial sacrifices to get care for their children. Meiram Bendat says this is a major trend. Bendat is both a psychotherapist and an attorney representing patients in insurance disputes. He says shortages of treatment providers, frequent coverage denials and a lack of enforcement of insurance laws are major barriers.

MEIRAM BENDAT: Debt, forgoing treatment and Medicaid tend to be the most common responses, particularly for getting services for kids and adolescents.

NOGUCHI: State and federal laws require insurers to pay for behavioral care on par with medical treatment. The insurance industry says it complies with those laws. But Bendat says violations are common and often go unenforced.

BENDAT: There are so many states that are just doing an awful, awful, awful job of ensuring access to care. Really, there are some states where you can't even get hold of a live person at the regulator's office.

NOGUCHI: California has some of the strictest mental health parity laws in the country, yet it too is in crisis. Christine Stoner-Mertz is CEO of the California Alliance of Child and Family Services.

CHRISTINE STONER-MERTZ: One of our children's hospitals saw something like a 1,700% increase in emergency room visits because there just weren't other options for them.

NOGUCHI: Stoner-Mertz says some parents never pick their children up from the hospital in order to qualify for Medicaid. They just give up custody.

STONER-MERTZ: The only way to get those services is if that child becomes a dependent of the state and therefore is automatically eligible for specialty mental health.

NOGUCHI: That kind of desperation sounds familiar and understandable to Colleen O'Donnell.

O'DONNELL: It's something I contemplated a week ago.

NOGUCHI: She says the financial and emotional toll of caring for her mentally ill child has come at the expense of her own mental health.

O'DONNELL: I mean, even now with things better, it's her and I in the house alone. And at times I feel, like, suicidal. I feel absolutely hopeless. I have contemplated giving up my child to survive myself.

NOGUCHI: O'Donnell recently started working as a school nurse again for the money and for her sanity. But she says she must ensure not to work so much that she loses eligibility for Medicaid. Yuki Noguchi, NPR News. Transcript provided by NPR, Copyright NPR.

Yuki Noguchi is a correspondent on the Science Desk based out of NPR's headquarters in Washington, D.C. She started covering consumer health in the midst of the pandemic, reporting on everything from vaccination and racial inequities in access to health, to cancer care, obesity and mental health.