I Thought Medicaid Was for Other People. Then We Had Joe.

June 15, 2017


Ten years ago, I would never have thought Medicaid would be an issue for us. I thought it was only for families who didn't have all the advantages we have: a solid marriage, a college education, steady employment, and really good luck.

Then we had Joe. Turns out Medicaid is also for people who are born with conditions that make it hard to do the things most of us take for granted: go to school with their neighbors, be accepted by any daycare or extracurricular activity, live in their own home, work in a job they enjoy.

Family LoveLike 11,000 other Virginians with disabilities, Joe is currently on the waiting list to receive a Medicaid waiver that will help him live a full life in the community. He was placed on the list at age 3, in the hopes that he *might* get it when he's an adult.

At 9, he is now halfway to adulthood. We are doing OK, with a school that's more accommodating than most and a circle of great neighbors and friends who care about him. But as adulthood approaches, we are worried. Will he have the support to find a real job that he enjoys? Will we have help with the things he still can't do alone? What happens when we die?

If the wait for a Medicaid waiver is already this long and stressful, we can't imagine what it will be if the federal funding is cut. We have friends in their 20s and 30s who are still waiting, cared for by aging parents fueled only by love and hope.

We already have such a long road ahead of us. Having it made longer and rockier by the legislators we trust to represent us is almost too heartbreaking to ponder.


We are a family of three: Patrick, Lia and our son, Joe (9). Patrick is an Army vet who served in Iraq. Lia is a freelance writer who specializes in healthcare and higher-ed topics. Joe has an unidentified genetic syndrome that includes severe intellectual disability, nonverbal communication, impaired motor function and musculoskeletal issues. He is also ridiculously adorable and fun to have around. The family lives in Columbia Heights, VA.