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Through our Health Care for All WV project, we and our coalition partners have worked to collect health care stories from real West Virginians to help educate the public and our representatives and to try to make positive meaningful policy change in our state. Here is one such powerful story, from a hard-working WV mom who was interviewed in December of 2021. Her story is shared with her full consent.
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Priscilla was working full-time up through May of 2021, primarily from home. This gave her the ability to both do her job while working around her many health challenges, and care for Micah, her adult special needs daughter. As someone with disabilities, Priscilla was able to keep her Medicaid while working full-time through a program called M-WIN.
M-WIN, Medicaid Work Incentive Network, is a work incentive for people with disabilities or chronic health conditions. It allows individuals who work, to pay a monthly premium and keep or obtain Medicaid healthcare coverage. M-WIN eliminates a major barrier to employment – losing current healthcare benefits when an individual with a disability returns to work. It also creates an incentive for individuals with disabilities to obtain employment and earn health care coverage.
M-WIN is not unlike HB 3001, the Medicaid Buy-In bill that didn’t make it out of committee this year, but which has bipartisan support and a good chance for passing in 2023. HB 3001 would allow anyone, not just persons with disabilities, to pay a monthly premium for continued Medicaid coverage, even when they work more than 20 hours a week or earn above the earnings threshold.
Priscilla’s health challenges became more and more significant. “It started in late 2020. I’ve been having back problems. It’s hard for me to sit for long periods of time in an office chair.” Compressed/bulging disks, in combination with carpal tunnel, severe arthritis in her spine, knees, and feet, migraines, gastroparesis, and three autoimmune diseases, made working a challenge.
Despite all this, Priscilla continued to work full-time, with the right care, medications, treatments, and with working from home. “I went through physical therapy, went to a massage therapist until COVID hit… I’m taking trigger shots right now, and I worked [full-time] from home for over a year.”
Before COVID, Priscilla was able to have her daughter cared for at an Adult Day Center, then had an in-home caregiver with Micah for the 3-4 afternoon hours remaining until she arrived home from work. But, due to COVID, the Day Center was closed, and caregiver staff were less available. Thankfully, working from home meant Priscilla was able to take care of her daughter and earn an income.
However, when COVID restrictions started to relax, her work started requiring everyone to come back and work in the office. Then, Micah broke her foot and was relegated to a wheelchair for weeks.
It was a struggle to get a care worker for Micah, but Priscilla finally was able to manage some level of success. “I got somebody from 8AM to 2:30PM every day, but I wasn’t able to get anybody in the afternoon, so I haven’t been able to work [in the office].”
Priscilla’s employer wouldn’t allow her to work from home anymore, so she was forced to apply for Family Medical Leave, Parental Leave, and to use up all her sick days and vacation days.
“So I basically had to stay home with her [Micah]. And then my health started deteriorating. I started getting tingling in my legs, my upper thigh.”
“It took ’til the middle of May to get me approved for my [Family Medical Leave],” Priscilla shared. She continued to work for a while, but Micah still needed care. “I paid a girl $8 an hour out of pocket for a while, you know, because I still had to work because I didn’t get approved for the FMLA till May.” It was some time in June before she received the first payment.
“They didn’t tell me at that time, the FMLA and the [Parental Leave] would run consecutively.” If they had not, she would have been eligible for an additional twelve weeks of leave without losing her job. “So, at the end of that 12 weeks, I was supposed to go back to work [in the office].” But her health issues took a bad turn. “The doctor ordered an MRI. They found the nerve impingement in my lower back from the accident I had in 1989, where I broke my pelvis in two. So, my doctor, you know, put me off [work]. He just keeps putting me off work.”
Priscilla was paying for her insurances out of pocket for months. “I had coverage up until my pay ran out. I’ve been paying out of pocket for PEIA and other insurances since June. Yeah, June, July, August, September. And I just recently paid November and December.”
Priscilla, due to her disabilities, was able to keep her Medicaid coverage, so that when she was no longer working, she was still covered. “My Medicaid is called M-WIN… They haven’t been charging the premiums due to COVID. I had been paying $108 a month for that [while working].” Continued coverage means Priscilla will still be able to get the treatments and medications she needs, without a lapse or break.
But it has been hard for Priscilla and her daughter, surviving on so little. “I’m really struggling right now. I had paid into short term and long term disability at work. And I’m now having to pay my premiums for my vision and dental and all my insurance policies. I’m having to pay everything outta pocket in, you know. The short term [disability insurance coverage] ran out in November, and the long term disability kicked in on December 9th. And it’s stretching me. My car’s in the shop, too, and we’ve got the house payment.”
Priscilla is currently applying for full Social Security Disability.
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If you or a friend have a WV Health Care Story to share, please visit www.tinyurl.com/wvstories21. Use Google Chrome to visit this form, tell us your stories, and digitally sign it. Your stories will NOT be used without YOUR approval or consent. We’d greatly appreciate your help in gathering these stories.
For more information about the Health Care for All WV campaign, visit www.healthcareforallwv.com.
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