Expansion delays put caregivers at risk

By the American Heart Association | Nov. 18, 2019

Melissa Dodge isn’t used to putting herself front and center. She is far more comfortable advocating for the American Heart Association on behalf of her daughter, Brooklynn, who was born with half a heart. But when you ask Melissa what she fears most, it’s not being there to take care of Brooklynn and her other children. That’s a very real concern for this single mom, because despite holding down a part time job, Melissa, like thousands of other Kansans, is uninsured and living in the coverage gap.

Eight-year-old Brooklynn’s diagnosis is extensive. In addition to having hypoplastic left heart syndrome, she doesn’t have 100 percent lung function due to a 2016 diagnosis of chronic lung disease. She’s also missing a large part of her neurological anatomy. She’s undergone 21 surgeries, three of which were open-heart procedures—the first when she was only 8 days old. She spent seven months of the first year of her life in hospitals. She has overcome a paralyzed diaphragm and is still living with a paralyzed vocal cord.

Brooklynn has three brothers. There’s Lucas, 12, followed by Jackson, 11, who is autistic, and Jason, who is 4. Four kids will keep any family busy, but with the extra time and energy Melissa must devote each week to her children’s health care this working single mom really has her hands full.

Maintaining Brooklynn’s health requires a lot of trips to specialists. Jackson’s autism also presents special challenges when considering before and after school care. But even with all of this, Melissa has found a way to make things work for her family. She lives with her mother. Her mom helps with the kids, which allows Melissa to work 20-25 hours a week at a grocery store. Working nights also allows her to take her kids to school each morning and to frequent doctor’s appointments.

“People occasionally ask why I live with my mother at age 35 and why I don’t work a full-time job,” Melissa says. “The truth is that 99% of what I do in my life is out of necessity for my kids and only 1% is personal convenience.”

She recently received the yearly notification from her job that due to her part time status, she doesn’t qualify for work-based health insurance. Since she makes too much to qualify for KanCare and not enough to receive assistance on the federal insurance marketplace, it was a sobering reminder that she could be one medical event away from keeping her family together. Living with that reality has an impact on her stress and mental health. Melissa’s dad died of a heart attack at age 54, so she knows the stress isn’t good for her.

She shared, “My daughter’s life is dependent upon me. No one else even knows what medications she takes or even the name of her cardiologist. I tell my kids that their health should always be priority, but I don’t model that behavior. I don’t take care of myself and don’t go to the doctor when I should, because I can’t afford it.”

As members of the Kansas Legislature consider various KanCare expansion proposals, the American Heart Association urges them to pass a clean expansion bill with no barriers and no delays. Complicated, multi-layered proposals with no deadlines for response from the federal government could further delay access for years for Melissa and other Kansas caregivers. Every additional day that access is delayed means another day that Melissa and her family risk utter catastrophe without health insurance. These delays quite literally put her life and the life of her family at risk. Premiums and co-pays, substantially passed along to the federal government, serve as nothing more than a punitive act against struggling Kansans.

Melissa just wants her kids to be healthy and to provide them with happy holidays. Her ability to provide these things for her family comes with numerous challenges. During National Caregivers Month, The American Heart Association hopes that the Kansas Legislature finds the political will to give Kansans like her the helping hand that is within their reach.

Learn more about the American Heart Association at yourethecure.org.