Jeannie is a working mother navigating the balance of full time employment and caring for her daughter. Jeannie’s daughter is 18 years old and has autism and cerebral atrophy, leaving her dependent on parental care despite aging into adult medical care programs. Jeannie’s daughter has been on Medicaid for about six and a half years and was previously on MoHealthnet for Kids which Jeannie states was much easier to navigate than adult Medicaid in Missouri. While her daughter was on the children’s program, Jeannie notes having no problem getting care for her child. It was when they transitioned to adult Medicaid that Jeannie noticed severe restrictions in the kind of care her daughter is able to receive.
Jeannie and her family live near the border of Missouri and Kansas and have had a difficult time finding mental health facilities in Missouri for her daughter as her conditions worsen. In emergency moments when they need to find immediate placement at an in-patient facility for their daughter’s mental health, Jeannie has been met with barriers and closed doors as many of these places will not accept adult Medicaid. Jeannie feels lucky to live near the border of Kansas as many of the treatment centers are in Kansas, though few will accept Missouri Medicaid. As she states, “I’ve been regretting living in Missouri, if we lived in Kansas, my daughter’s care would be so much better”. In addition to the limitations in providers, Jeannie notes the lack of transparency in costs covered. In October, her daughter had a two week stay in the hospital and only knows with certainty that one of these days of her stay is covered by Medicaid. They will not know until they receive the bill whether or not they had coverage for this extended emergency stay.
While she is grateful for the cost coverage Medicaid provides for medication and some doctor’s visits, Jeannie wants people to know how limited mental health services are for people on Medicaid. As many of the in-patient facilities are regularly at capacity, combined with the limited options for Medicaid recipients, Jeannie is left in a constant state of uncertainty as she never knows if her daughter will be able to receive care or what the cost of that might be. Having a child with special needs requires constant supervision, as Jeannie states. Under Medicaid expansion, Jeannie believes more of her time could be spent focusing on caring for her daughter and managing other aspects of her life instead of the constant battle of searching for care and sorting out billing problems.