In Their Own Words
Monica is a nurse by training. She worked for years as a home care nurse, advocating for her patients within the dysfunctional health care system. So she wasn’t surprised when the state cut off thousands of HUSKY parents without warning, including she and her husband – in fact, she expected it.
It didn’t help that she was in the hospital when she got the notice that her whole family was being dropped from HUSKY. She got widely differing answers and advice from DSS and hospital staff. Eventually, due to her persistent advocacy, they were able to keep her two girls on the program.
Monica was born with spina bifida but earned her degree in nursing, became licensed as an RN, and spent fifteen years in the important job of caring for the elderly and disabled in the community, allowing them to stay in their homes and saving the state a great deal of money. However three years ago, while she was pregnant with their second daughter, she contracted an antibiotic-resistant bacterial infection, was hospitalized and eventually lost one leg above the knee. Her daughter was born early, spent weeks in newborn intensive care, but is doing fine now. HUSKY covered all the costs for her daughter’s care, for which Monica is very grateful.
Monica is engaging, articulate, and very well-informed. Above all else, she is a loving mom to her two adorable girls, ages nine and three. One of the girls is always in her lap. She is always smiling and laughing. Her home is on a quiet side street in Branford – far from the stereotype of a HUSKY neighborhood. Her husband owns a small business. Within moments of entering Monica’s home, it is clear that the girls are the center of their lives. Her home is sunny and busy – full of toys, colorful artwork by her girls and comfortable, kid-friendly furniture. There is a grassy backyard with a jungle gym.
In our first visit, Monica greeted me at the door from her wheelchair. She now has a prosthetic leg with brightly colored smiley faces all over it. She had to go to Long Island, a two-hour drive, to get it and she has been back for refitting three times. It cost $50,000, which is a reasonable price for a decent, serviceable prosthesis. However, the health insurance coverage she and her husband had to buy after they lost HUSKY comes with 20% coinsurance. Monica knows that she will owe $10,000 for her leg, but hasn’t received a bill yet. And her new leg will not last forever; she will likely need another in a year or two.
She also needs glasses, but since her insurance doesn’t cover it she is waiting on that. She barters for dental care with services from her husband’s business. “But I won’t delay the kids’ care, ever.”
Because of Monica’s disability, when they lost HUSKY they were not in a position to go without health insurance. “We could lose everything.” “How could I take care of my girls without health insurance?” Their coverage, just for Monica and her husband, is $776.40/month -- one third of their income. That doesn’t include copays of up to $45 for doctor visits, $500/hospital stay and up to $25 on each prescription on top of the coinsurance. Their share of her wheelchair was $600, which they are making payments on. The policy doesn’t include dental or vision care. All medical equipment is subject to a very strict review process – she has to pay $300/month for supplies that are not covered. She has incurred thousands in hospital bills. “I’ve lost count.” There are also outstanding bills to the pediatrician and obstetrician. But she is working through them. There was a dispute over the bill with the home care agency that came to see her after the last hospital stay, but she cleared that up because she used to work for the agency. Thankfully the girls are still on HUSKY.
Monica will acknowledge that she is very fortunate. She emphasizes how lucky she is. Hers is a loving and supportive family. Her mom lives next door and helps with the girls and with the bills. She inherited their house – she doubts that they would be able to afford to own their own home otherwise. She also has lots of experience working the complex and confusing health care system on behalf of clients. Now she is using that experience for her own family. She is unique as a very sophisticated consumer in negotiating prices with providers. “I know how to work the system.” But she worries about people who aren’t as fortunate. “I don’t know how they are expected to manage. It’s impossible.”
Monica is doing extremely well. After she got her leg, they went on a hiking trip to New Hampshire. She is working part-time for a medical records review company. She is able to work from home a lot, to be with her girls, but the job doesn’t come with health benefits. She joined a gym, is on Weight Watchers and has lost 40 pounds. She worries about losing her other leg and is doing everything she can to stay healthy.
She is interested in becoming an advocate to lobby for people with disabilities.
“They will pay millions of dollars to put fires out but won’t spend a dime to prevent the problem in the first place.”
Policymakers “just don’t get it. I’d love to take them to meet people who are choosing between food and medicine. They talk about personal responsibility, but they don’t give you the tools to live.” “They talk a good game, but they don’t put up the money.” “It’s a messed up system. The poor get care. The rich can buy it. But for us in between, there is no help.” “We need universal health care.” – she believes it needs to come through a partnership of government and employers “I want the insurance plan that Congress gets.” “There is this perception that it’s easy to get health care in America. WRONG.” ”Most people won’t admit that they are uninsured.”
“I know we are very lucky, but not everyone is.”