Medicaid to Us


Our 4-yr-old daughter Lydia has an unidentified condition that causes brain malformations and frequent seizures. She has never learned to walk or hold her head up. She has never spoken a word or laughed. No one knows why. This didn’t happen to her because she is a bad person or because we are. This is just something that happened. We are a healthy couple who had a normal pregnancy and we already had a healthy son. Lydia had an MRI at 3 months old, and she was diagnosed as having diminished white matter and a thin corpus callosum (the part that connects the two halves of the brain). Currently, she has about 60 tonic seizures a day. She has seen doctors all over the country, had dozens of tests. All anyone can tell us is that her life expectancy may be very short and she is a mystery.

This news crushed us in the beginning. But our life with her has gradually become a very happy one. She is a sweet girl who smiles easily, especially in response to familiar voices or the sound of chimes. When she is content it makes no sense to complain for ourselves. We must savor the time we share with her and reflect the joyfulness she carries.

Every day we spend many hours caring for her – changing her diaper, brushing her teeth, brushing her hair, transferring her carefully into a chair designed for her body, smoothing out wrinkles in her socks so she is not uncomfortable, preparing her foods that need to be just the right thickness to prevent aspiration, talking to her so she knows what’s coming and where she is, feeding carefully while watching for signs of choking…and this is just the first hour of the day! It is so much work and she is growing bigger and heavier. We are not lazy people. And we do not feel burdened. We feel peaceful and full of purpose.

We are deeply grateful that we are able to care for her at home. Before the 1980s it would have been standard practice to institutionalize her since the Medicaid rules would not allow for care anywhere but in a facility. This makes me sick to my stomach to imagine. (Thank you Katie Beckett and Ronald Reagan for changing the law so our family could be together!). Keeping her at home is also considerably cheaper than if she were in a facility and this is one reason why the Medicaid law was changed. We want to be together as a family, though we are not typical. We thrive as we care for each other and invent creative ways to keep both our children comfortable, safe, and have the best chance to make the most of their lives – as any parents would do for their children.

We could not survive as a family without Medicaid. Taking care of Lydia is not always easy and we are not always successful. Our own health suffers with the emotional and physical stress of constant caregiving. Sometimes it is just hard to know what to do. Medicaid helps with some of the financial worries. Medicaid cover the costs of her seizure medication to try and reduce the number of seizures (~$1,300 monthly); her physical, occupational, and speech therapies to try and improve her abilities as well as prevent aspiration, muscle contractures and other problems (~$1,400 monthly); her wheelchair so that she can get around (~$3,500); her feeding and activity chair so that she can sit upright in a good posture and participate in activities as well as be safely fed to reduce aspiration (~$4,000); a bath chair so she can be washed (~$400); a patient lift system to help transfer her as she gets heavier (~$4,000); and the neurology, dental, pediatrics and other doctor appointments to keep her healthy (~$20,000 annually). There are more expenses too – for her specialized foods and diapers (~$500 monthly).

Medicaid does not cover all our needs. We also spend a lot of money out-of-pocket on communication tools, specialized toys and recreation visits to therapy pools that are deemed as not medically necessary for our daughter. Soon we will have big costs that will be all ours to bear- a wheelchair ramp in the garage, a wheelchair van, and some bathroom remodeling to be able to get her into the shower without lifting. There is no free ride happening here.

When you compare our yearly Medicaid costs, estimated at about $70,300 for a year of Lydia’s life (or about $60,000 considering we don’t need new equipment yearly) , it is still a fraction of what the Air Force revealed it costs to fly Air Force One for one hour – $228,288. I know that’s a bit of a random statistic, but imagine the President flying one less hour to vacation – it could pay for over three years of our daughter’s Medicaid to give her the opportunity to be the best person she can be! Makes those Mar-a-Lago trips seem even more extravagant.

Lydia’s care is expensive, but not as expensive as taking away her Medicaid. Losing Medicaid would have a ripple effect through the health and well-being of our whole family, and a negative effect on the community that knows and loves Lydia. We might lose the ability to care for her at home if we could not cover the costs of her medications, or the equipment we need to move her from bed, to bath, to wheelchair. She might get sicker without therapy, and she may develop painful contractures that need expensive surgery if we can’t keep moving and stretching her. In the long term, costs would actually go up without Medicaid! Previous administrations have seen this and made the wise decision to strengthen help for vulnerable families. And if the thousands of families like ours across America lost Medicaid, it would have a devastating effect on the health and well-being of the whole country.

Medicaid keeps our family as healthy as it can be in a tough circumstance. Every morning Lydia smiles when she hears her brother’s voice. She moves her hands the little bit that she can in excitement for the day. She scowls when we put her clothes on because she hates her shirt going over her face. She wiggles her toes as we put her in her chair. She opens her mouth big as soon as she hears breakfast is near because she loves to eat more than anything. She yells happily when Grandma talks to her. Life is peaceful with her. We have what we need to make her life as good as it can be during the limited time she will be with us. Supporting Medicaid is simply the right thing to do for her, for our family, and for the worth of our community.

PS. My friend sent me an email in response to the above asking if Lydia was at risk of losing her Medicaid. This post is already too long but in case anyone is wondering:

Yes, Lydia is at risk of losing some of her Medicaid coverage. I don’t think she would lose it completely, but funds for everyone on Medicaid would be drastically limited. This means that Lydia would have to go without some of the things listed above as they would be unaffordable for us. Is it more important to have her seizure meds or physical therapy? Tough choices. Also, by the time Lydia goes to school, they may have had to cut the nurses who are partially funded by Medicaid and I am not certain I should send my medically fragile child to school if there is no nurse, no skilled aide and no money for special equipment. Another tough choice. I can’t even think what will happen if an emergency happens or one of us gets sick. But mostly, I feel for the babies with complications who are being born now. The limited funding and rising costs will mean waitlists that may be years long. This is a problem now in states such as Florida, where I know of a little a girl like Lydia, also 4-years-old, who has never received any Medicaid funds but is still just waiting, waiting, waiting. Meanwhile her family is on the edge of bankruptcy.

I am all for finding ways to reduce government expenses. I just think it can be done in other ways rather than punishing the vulnerable first. For example, the companies charging thousands of dollars in medical equipment and medication for kids like Lydia all over the country- is it really fair to give them another tax break? Does her seizure medication really need to cost over $1,000 a month?