Abbey-Rose is a 19 year old living with a disease called Ehlers-Danlos syndrome, a connective tissue disorder that affects many systems of the body including the skin, joints and blood vessels and can extend to other organs of the body as well. Both Abbey-Rose and her mother have been on Medicaid since she was born. As she aged out of the children’s Medicaid program this past year, Abbey-Rose found herself in the midst of the bureaucratic system that is applying for Medicaid.
Abbey-Rose relies on Medicaid for various medications and frequent doctor visits. For two months this year, she was unsure if she would have care once she aged out of her mother’s plan. She lived in fear of receiving a surprise letter saying that her care had been cut off despite having sent in all the necessary documentation. As Abbey-Rose states, “paperwork always gets lost. Even when you hand deliver your paperwork, you can still get a letter saying you failed to provide the needed paperwork. When you call, you speak to so many different people and get a different answer every time. Oftentimes, speaking to someone on the phone makes your situation much worse.”
While applying for adult Medicaid, Abbey-Rose spoke to a case manager working in the SSI office and learned that this one worker had over 300 cases to oversee, an impossible number that leaves people in need of careful case management at high risk. She goes on to say, “the system is so outdated and archaic. The government expects patients to be their own case manager and find impossible resources on their own. All while trying to work to meet work requirements for these programs. It just doesn’t make sense.” If someone is finally granted Medicaid, Abbey-Rose explains that “the financial limits and lack of transparency for covered costs make it impossible to plan for a future. To qualify for Medicaid, a person cannot have any personal resources like a substantial savings account or owned property. If you begin to acquire personal resources, this will disqualify you from the program, even if you still have a financial need for Medicaid. This, combined with the inability to track what will or will not be covered by Medicaid is what keeps people in the cycle of poverty”, as Abbey-Rose states. She goes on to say, “its unbelievable that there are people that have been voted in to office that do nothing to end the cycle of poverty. To expect people to survive on such little money is ridiculous.”
This January, Abbey-Rose is scheduled for a surgery on her large intestine which is almost entirely non-functional. The procedure will involve a stomy, in which a bag will be used for waste removal for her body. Abbey-Rose knows her Medicaid coverage will only cover a limited number of the bags she will need because they are considered a prosthetic which is typically not covered by Medicaid. She has no way of knowing how many will be covered and won’t know until it is time to purchase them, leaving her in financial uncertainty while trying to heal and care for herself post-surgery.
Last year was her first time voting and Abbey-Rose reached out to candidates to discuss healthcare and was disappointed by how many of them dismissed her. As she states, “my disability is only going to get worse. It’s scary to see how trivial this issue is to people. It hurts not to be seen”. Because of her mother’s disability and her own, Abbey-Rose has had health insurance her whole life. Without qualifying for SSI, she would be one of the hundreds of thousands of people in the Medicaid gap in Missouri. Under Medicaid expansion, Abbey-Rose would feel seen by policymakers, “it would make me feel like a person. Right now I feel like a number on a to do list of who to take care from. It’s hard to feel like a human being when we all have to wait until we’re extremely sick to see a doctor for fear of the cost. I rely on this care for everything, I need it to survive and yet it feels like legislators are completely comfortable with me dying if I lose care.”