Olivia's Story: Finding New Roots in Pennsylvania

by Chelsea Anders

My name is Chelsea Anders. I live in Pennsylvania with my husband and two children, 10-year-old Olivia and her little brother, Jake. In 2023, my family and I made the incredibly scary decision to leave our roots and community behind in Lubbock, Texas, and relocate to Pennsylvania, where we knew no one and would have to start from scratch. The reason is simple: We wanted the best for our daughter, Olivia. 

Olivia is such a firecracker. She just graduated from fourth grade. She's whip-smart, hilarious, and incredibly opinionated. She's not shy about sharing her thoughts! Every weekend, she's out on our back deck gossiping about the neighbors, unless she's baking cakes with her dad in the kitchen. Olivia aspires to be a master chef and baker, and you better believe those cakes are adorned with sixteen colors of sweet, sweet icing. She’s truly my best friend. 

Olivia also has cerebral palsy. After her premature birth — I blame the trashcan nachos I had the night before — she spent around six weeks in the NICU. She uses a bright purple wheelchair for mobility, relies on a feeding tube for nutrition, needs to be monitored for seizures, communicates with a speaking device equipped with a ton of cheesy jokes, and also uses a mix of her own version of American Sign Language. She's an incredibly resourceful kid who quickly finds solutions to problems, although, unfortunately, that doesn't extend to her math homework. 

Having Olivia awakened the activist in me and ignited my passion for advocating within the disability community. I'm constantly thinking about "what would Olivia say?" She’s the reason I started working at the Texas Council of Developmental Disabilities and continue to work for them remotely, and her Medicaid coverage is why I’m able to do that. She just started home nursing, which is incredible, she has such a cool team of people to help her out. Getting the supports she needs means that I don’t have to leave the workforce to care for her, and it's so rewarding to do work that has a meaningful and immediate impact on the lives of kids like Olivia. Similarly, my husband is able to work, and we’re able to save money for more financial security and independence: A big expense doesn’t have to mean the difference between having a home and being out on the street.

Her Medicaid waiver covers the premiums for her private insurance and serves as a secondary insurer for expenses they don't cover, which is extremely important for our family. Medicaid is a lifesaver for us. It pays for Olivia's incontinence supplies and formula, which can cost nearly $2,000 per month. Medicaid is also funding the replacement of her wheelchair, which she's quickly outgrowing because she inherited her dad's tall genes. Additionally, it covers skilled nursing so Olivia can receive support at home and school, which is vital for her independence and our ability to be the best caregivers we can be. We are no longer one hospital stay away from disaster.

It was heartbreaking to leave Texas, but the state ranks last in the country for support of disabled kids, and we knew that Olivia wouldn’t be able to access the care she needed to thrive there. They refused Medicaid expansion, and the kinds of services available on Medicaid are very limited. We became accustomed to hearing “no” there. We knew that for Olivia to have equity and opportunity, she could not grow up in Texas. We felt deep down that the longer we stayed, the more time Olivia would have to spend catching up because of the services and supports she could not access in Texas. It could cut off her path to a future and an education. 

Relocating to Pennsylvania required extensive planning, but we immediately recognized it was the right choice for her. Olivia deserves access to education, independence, and a future. Pennsylvania Medicaid provides that for her. We also understand that Medicaid will continue supporting her after we're gone, which brings immense relief as a parent to know your kids will be okay. 

Now she receives care at the Children's Hospital of Philadelphia, one of the best facilities in the country, and her care is amazing. People treat Olivia seriously as a person. They talk to her and not me and are so eager to help us connect with services she is eligible for. She’s doing so well in school; although she’s not a fan of homework, she loves learning and she recently put on a whole presentation about the Berenstain bears, complete with what felt like every teddy bear she owns. 

Thanks to Medicaid, Olivia can reach her full potential, and we know her future is bright. We refer to her as the MVP of our family; she's adventurous, outspoken, and loves to perform. It's a joy to watch her grow, and I'm so grateful that we can provide her with the start in life that she and every child deserves.

Olivia excels at asking for and giving help. I'm not just asking for help for Olivia, though: I'm asking for assistance for all medically complex kids like Olivia. They're not seeking a handout or trying to profit here; they're just striving to equalize their opportunities.