When Politicians Threaten our Health Care, They Threaten My Family.
By Carolyn Murray
I am the 56-year-old single mother of a young adult named Daniel who was born with severe disabilities including microcephaly and epilepsy. Daniel lives at home and requires total care, which I provide with the help of personal care assistants covered by Medicaid.
I’m a Registered Nurse, and chose to work in jobs that allowed me to care for Daniel when he’s not in school. For several years I was a school nurse so our schedules matched. But juggling Daniel’s care, my work, and other responsibilities took a toll on my health. This is not uncommon for long-term caregivers — studies show we’re at higher risk for illness. In 2013 I was diagnosed with colon cancer, and in 2015 I was diagnosed with stage two breast cancer.
Following treatment for cancer I became too ill to continue working full-time. I was forced to leave the school I loved, and though I had to leave the benefits of my full-time job, I was still able to obtain quality health insurance through the Affordable Care Act’s (ACA) Marketplace Exchange. I now work part-time so I can be home when I’m having medical difficulties and when Daniel is ill. His seizures occur unexpectedly, and a run of the mill illness can mean a week home for him.
The past two years I have been on edge. Every time a threat to the ACA is announced, my heart races and I start contacting my representatives once again. It’s difficult enough for families like mine to face the day to day struggles, but with the added worry of losing our coverage, it’s almost too much to bear.
I live in Florida, which has not expanded Medicaid. My state has a long waitlist for people with disabilities who need the help of a Medicaid waiver. My son waited over a decade before being added, and many more are currently languishing on the waitlist.
My hope is that Florida will eventually do the right thing and expand Medicaid so I’ll have less worry about Daniel’s future healthcare and services, and that others can finally receive the services they need. I also hope our country will do the right thing and stop threatening the ACA. The stress of having to fight for these basic rights is exhausting. Having the ACA intact means I can purchase health insurance without fear of being rejected due to my history of cancer. Having the ACA means I can focus on caring for myself and my son.
Carolyn Murray is a member of Little Lobbyists.
