At the age of two, Mikaela Murrey has been through far more trauma than most adults will ever encounter. Retinal blastoma, a rapidly developing cancer, has stolen both her eyes. She’s had six surgeries and a half year of chemo, to battle two bouts of the disease. She is monitored by oncologists at Children’s Medical Center and still takes medication. She receives occupational therapy to learn how to accomplish routine tasks like holding a cup, getting dressed and feeding herself, that most other children come by naturally. She gets braille lessons, and is learning how to walk with a cane.
Fortunately for Mikaela, she is blessed to have an endlessly patient, boundlessly generous mother, Michelle, who adopted her last year. On many afternoons, after Michelle gets home from work, mother and daughter can be found playing outside with other neighborhood kids, who’ve accepted Mikaela as a playmate despite her sightlessness.
Mikaela might not be alive without Michelle, and Michelle couldn’t have afforded to adopt Mikaela were it not for Medicaid.
But Medicaid cuts of more than $800 billion are in the sights of Congress’ goal to repeal Obamacare. And Michelle’s mood vacillates between ‘nervousness’ and ‘devastation’ over what will happen next. Her generosity in adopting Mikaela, albeit motivated by love and kindness, could lead to financial ruin if she has to pay her daughter’s health costs out of pocket.
The surgeries, the therapies, the medication were far beyond what Michelle could have handled on her $40,000 annual salary as a grant writer. This month Mikaela will be fitted with the first of two new prosthetic eyes, which cost more than $2000 each. The eyes will have to be replaced every two years as she grows and her face changes shape. They are big ticket items in an endless stream of health care costs Michelle faces with her daughter each year. They are paid under the Star Kids program, which provides Medicaid payments for assistance of adoptive parents of children with disabilities. Star is a program which manages Medicaid through a third party administrator. In its rollout of the Star program last year, Texas promised that Medicaid children would get “still get the same Medicaid services they receive today.”
Clarissa Mueller has hydrocephalus, cerebral palsy and has had two brain shunts. Still, when Stacy and Amy Mueller of Rockwall got to know her they “fell in love with her,” says Amy.
Despite the state’s guarantees to the contrary, Clarissa’s Medicaid-funded occupational therapy has already been cut under Star Kids managed care, Amy says. Clarissa gets nursing care during the day so mom Amy can teach second grade in Grand Prairie. If nursing care gets cut, “I don’t know what we’ll do,” Amy says. “I’ll have to quit my job and stay home, and that will be horrible. But we’ll do whatever we can to make sure her needs are met.”
“Right now,” Amy says, “she’s thriving. When we got her she was two and weighed nineteen pounds. Now she’s five and weighs thirty-six pounds. She’s thriving.”
Both the Muellers and Michelle Murrey have contacted their Congressmen as well as Senators to ask what will happen, and have received letters thanking them for their ‘input.’
Carrie Williams of the Texas Department of Health and Human Services told me in an email “We’re taking a look at what type of impact any federal changes to health care and/or the Medicaid program may have on Texas, but at this time it is too soon to speculate or offer specifics.”