Mom of Child With Down Syndrome Struggles With Insurance Needs

Tags: Currents Barbie, Down Syndrome, Faith, Family, Health, Health Care, Inspiration, Media, ProLife

By Jessica Easthope 

Six-year-old Noah Jacob’s communication is limited, but his eyes say it all. Noah is a model who’s appeared in national campaigns for big brands like Target, boosting visibility and inclusivity for the special needs community. 

Currents News reported on Noah earlier this year: his mom, Yami Johnson, fought to give Noah life. Ever since, it’s been a battle to keep him healthy. 

Noah has been wearing glasses since he was three months old as his down syndrome diagnosis comes with progressive vision loss. “I just noticed after having three children prior to Noah, that he wasn’t really looking at us,” she tells Currents News of how she discovered his health need. “He had a lazy eye, he had blurry vision, he has astigmatism,” she adds. “He sees the eye doctor about every three months and the prescription has changed every time since he was three months old.”

Yami says his eyes still stand out – even behind his glasses – but their struggle to get her health insurance plan to cover his vision needs feels like this is yet another way in which families and mothers who choose to bring a baby with special needs into the world are left unsupported. 

She says her insurance plan through Medicaid Fidelis covers new lenses and frames for Noah every two years. But in two years he goes through eight new prescriptions and the rest of the cost falls on her.

“Sometimes before the month is over, he’s lost the glasses,” she explains. “I’ve had those incidents at school on the bus where they don’t know if he got on the bus with the glasses at the school. You have to say to yourself, well, what’s more important, you know, putting food on the table or keeping the lights on or paying almost $300 for a pair of glasses.”

Noah’s eyesight affects his quality of life in school, at home, and on set. Yami says that’s where her insurance coverage falls flat: “They actually haven’t realized that our babies are special and they do require more coverage.”

After Noah’s diagnosis when Yami was still pregnant she was pressured to abort him. She advocated for him and his life then, and continues to do so now.

“I always say that you never get a ‘congratulations’ with a down syndrome diagnosis, you never get that,” she tells Currents News. “And it’s hard because you don’t really feel like you have the support. They kind of remind you that you should have just made a different choice because then it wouldn’t be this hard.”

Both Yami and Noah do the best they can to be models not just for him, but for every child with special needs .

“I was happy to see that during his last shoot with Target they allowed the glasses. The stylist fought for that, and we were able to get him to shoot, so I’m looking forward to his new ad that’s coming up with his glasses,” she says.

There have been plenty of times when Yami was forced to choose, and she continues to choose Noah every day.