Though the issue of Medicaid expansion has often been painted as a partisan fight, for many Mainers, access to affordable health care is not political–it’s a matter of life and death.
Like tens of thousands of others across the state, Donna Wall falls into the coverage gap. Donna is a 60-year-old single mother who cares full time for her three adult children, all of whom have been diagnosed with autism. Ashley, 22, is considered high-functioning and according to her mother is a “huge help” with the twins, Brandon and Christopher, who are both nonverbal.
When her boys turned 18 almost two years ago, Donna was kicked off her health insurance because she is now considered an “able-bodied adult without dependents,” in government parlance.
“I had an appointment for a mammogram,” she recalled, “and they went on their little computer and they said I had no insurance. I didn’t know what to say. They just cancelled me. They didn’t care if I was healthy or not.”
Because she could not afford prescription costs out of pocket, Donna was forced to stop taking her antidepressants “cold turkey.” She also stopped going to counseling to help her manage her anxiety and post-traumatic stress disorder.
“I don’t go to the doctor, I don’t get meds filled,” she said. “I was told by my eye doctor that I have a spot in my eye that could turn into melanoma that I need to get checked every year, but I haven’t been since I lost insurance. I often think about that. If I get melanoma, I won’t even know.”
During the day, Donna cares for her children–from bathing to dressing to feeding. The family lives off the public assistance they recieve for the three adults with disabilities, but to supplement food costs–“My boys eat a lot”–Donna took a job a few years ago delivering newspapers at night.
“You work seven days a week and the only day off is Christmas,” she said. “I would get a call anywhere from 12am-2am to pick up the papers and then in the summertime I would run, for three hours, from house to house delivering them.”
The winter, however, was “hell,” she said. “People don’t shovel their driveways, I’d be up to my butt in snow trying to get to the door to deliver the paper.”
One night last year, Donna hit an icy patch in a driveway, fell and severely broke her ankle. “I was terrified,” Donna recalled. “Oh my god, I thought, who’s going to take care of my kids.”
Donna’s medical bills for that one fall have now topped more than $60,000, and she still needs occasional physical therapy. “How am I going to pay anything back?” she asks, noting that last year, with the newspaper route (which she no longer can do) and a small amount of alimony from her ex-husband, she made roughly $10,000.
Despite her own struggles, time and again Donna switches the conversation to other people she knows who also don’t have health coverage. Before her accident last fall, Donna was an active volunteer with the ballot campaign that won Medicaid expansion.
“I thought to myself, ‘I know I can’t be the only person around who is working without insurance, or trying to care for disabled children,’” she explained. Her sister is a certified nursing attendant and is currently taking care of their mother who has dementia. “She’s in the same boat as me,” said Donna. “She has no insurance and she’s doing a very important job.”
Pointing out that after all her work to get Medicaid expansion passed, she wound up being in a situation where she needed coverage more than ever, she said: “Sometimes I think God is using my situation and using me to try to help people. I really feel that strongly. Because it’s not right,” Donna continued. “There shouldn’t be a right to live only when you are rich. Poor people have a right to live too, a right to medical treatment.”
Donna was among the dozens of impacted people who visited the State House Tuesday to lobby lawmakers to support implementation of the law. The administration of Paul LePage is currently up against an April 3 deadline to present a plan for implementation to the federal government.
Donna said she feels it is important to share her story because politicians like LePage “think people who don’t have insurance are lazy.”
“I am not lazy,” she said forcefully. “I hate that misconception. There are a lot of people working who don’t have insurance,” she said pointing to family caretakers like herself and her sister, who would not be eligible with the Medicaid work requirements that LePage wants to institute.
“I wish he would trade places with me,” Donna said of the governor. “Let’s do life swap: I’ll veto everything he vetoed and he can come here and take care of my boys and see how easy it is. He doesn’t understand that people are struggling.”
When asked how she will celebrate on July 3 when she, like 70,000 other Mainers, will become eligible for health insurance, Donna said, “I think I’m going to be in shock. I’m going to be so happy, and I’m going to be so happy for all the people out there who don’t have insurance, like my sister. This has been such a long struggle. It really has.”