Rachel

Age 25, Pennsylvania

Meet Rachel. Rachel is an extremely social person with a very empathetic soul. She loves swimming and playing with her cousins, doing puzzles, volunteering at a senior living center, and petting her dog, Sonny. She also loves cooking, and is a huge help as my sous-chef! After 24 years of not having a diagnosis, Rachel received a genetic diagnosis of FBXO11 – but the kids with it are all very different. She has an intellectual disability, high blood pressure, and an extreme tendency to gain weight. She needs complicated supplement management to avoid oxidative stress, which puts her in a hallucinatory state that is very scary. We struggle because as an adult, Rachel does not have access to the same multidisciplinary medical teams she had at CHOP. The last time she had a medical crisis, we drove 400 miles to Cleveland Clinic. 

Rachel has a Community Living Waiver, but it only pays for a day program. She needs a bigger waiver to move out into the community. We have been on the Emergency Waiting List for the Consolidated Waiver for five years. As it is now, Medicaid is supposed to pay for Rachel's speech pathology. But the amount it pays is about $30/hour less than the going rate, so we pay out of pocket for that. If the ACA were repealed, we could lose our employer-provided insurance for Rachel. This means that Medicaid would become her primary insurance, which would leave her with less access to care and also cost the state a lot more money than it does as a secondary insurer now. We also struggle to find dentists that serve children and adults with disabilities. In our kids' case, dental care IS medical care, because dental issues can quickly lead to life-threatening medical issues for people unable to communicate when they have a toothache that might be an abscess or other infection.

Submitted by Samantha, Willa’s mom.