Heather is a 28-year-old in Joplin who works part-time as a server and full-time as her mom’s unpaid Direct Representative through Public Partnership, a Self-Directed Services program. Heather’s mom, Serina, has Freidreich’s ataxia, a rare, genetic, neurodegenerative disease that causes progressive difficulty with walking, talking, and limb movement. Serina was diagnosed in her teens and has dealt with the symptoms for most of her life. She had her first stroke at 25 and another one shortly after. Heather has helped take care of her mom for most of her life, but after Serina suffered two heart attacks and another minor stroke two years ago, that responsibility increased. At almost 54, Serina is bed-ridden, unable to really move or even talk.
However, Serina has expressed that she wants to spend her last days in her home, which means Heather has taken on the role of working with Medicaid and disability to hire and manage in-home care for her mother. This role had previously been filled by a hired attendant, until Heather discovered the attendant and team of nurses had been verbally abusing, neglecting and taking advantage of her mother, going as far as stealing from Serina. Serina resisted applying for disability and Medicaid coverage for a long time because she didn’t want to be a burden on the system, but when her condition progressed, she had no choice. Working with Medicaid has been a significant struggle for Heather. Serina requires basically around-the-clock medical attention, and Heather is responsible for hiring and firing medical assistants to tend to her mother and ensuring the cost of her mom’s in-home care doesn’t exceed her budget. Heather says she has a hard time securing good nurses to take care of her mom, as the job does not offer benefits and requires long hours.
In 2018, Heather’s mom was unexpectedly dropped from Medicaid. Heather found out that DSS had mailed forms to be filled out, but one page had not been sent to Serina and thus, her forms were incomplete. Although Heather had done everything right, this bureaucratic mistake left Heather’s mom without Medicaid coverage for a month while Heather fought to get her coverage reinstated. Heather recalls being stressed beyond belief and terrified of what would happen if the mistake was not worked out and Medicaid was unable to back-pay for services rendered during this period. “She couldn’t live without Medicaid, and I don’t know what we would do if she lost it,” Heather says. “It’s just insane that I had to work so hard to get them to work with me – I’m sure lots of other people would just give up because navigating the system is so frustrating.”
Although it would ease her burden and responsibility, Heather has promised her mom she won’t let her die in a nursing home and wants to give her mom the end-of-life care she deserves. Heather struggles to find the time to enjoy her mother’s company when she is constantly spending her free time managing her mother’s care and jumping through Medicaid’s hoops to maintain coverage. Many others depend on Medicaid to receive the medical treatment and in-home care that they need, and the legislature’s threats to cut funding to Medicaid and implement work requirements put vulnerable Missourians like Serina at risk and increases the stress and already-heavy burden their family members bear.