This Christmas, I wish I could enjoy the holidays and have some peace of mind for once. However, as a home care provider who relies on funding from the state of Connecticut to survive, the past few years were marked by loss and instability.
In 2021, I lost my mother and my sister to COVID-19. Now I might lose my knee because as a home care provider funded by Medicaid, I can’t even afford to get health care for myself. No one, especially those of us who care for people with disabilities, should be forced to endure such hardship.
For more than two years my knees hurt badly. Sometimes, the pain is so unbearable that I fear the day might come when I will not be able to stand at all.
Initially, I paid out of pocket for a high deductible health plan, costing me $700 monthly in premiums. That insurance left me with $4,000 in unpaid medical bills after my first knee replacement. And one knee replacement surgery was not enough to heal.
At this point, my other knee is bone-on-bone as the cartilage has worn out. I know that I need a second knee replacement. But I can’t even pay off the last surgery, much less afford to get the second surgery now that I don’t have health insurance. If it gets much worse, a high-risk emergency knee replacement surgery might be my only option.
This is my reality, and I am not alone. I am one of 11,000 Personal Care Attendants (PCA). The majority of PCAs are women and people of color, caring for the most vulnerable among us. I have spent the last 15 years supporting people with disabilities and their families through the state’s Department of Developmental Services.
I give my all into caring for my patients and it shows. The sister of the 82-year-old man I care for says that her brother would not be alive today if it wasn’t for me. I love my patients and they love me.
But this work has demanded so much from me.
After both my mother and my sister died from COVID-19 three months apart from each other, I couldn’t afford to take time off to grieve. So, I picked myself up and cared for my patients. Later, when I got COVID myself, I took a pay hit while sick because I get no paid time off to recover.
My story is not uncommon. PCAs lay at the bottom of the pecking order of health care services. State leaders seem to quickly forget that we care for everyone. We all deserve the right to grieve our loved ones. We all deserve the right to be able to afford to care for ourselves. PCAs like us deserve the same respect as every other healthcare provider.
In my 15 years working as a PCA, I’ve never gotten health insurance from my job. I’ve never gotten paid time off. I’ve never had any way to save up for retirement.
Today I’m 64. Most people my age are winding down, thinking of retirement. I don’t know if ever will. Fifteen years providing care for people’s loved ones and I have nothing to show for it, except $20,000 in credit card debt and $4,000 in unpaid medical bills.
When the state promised PCAs a 6% bonus on our wages, I hoped to finally be able to pay down debt. It’s been months now since we finalized our contract with no bonus in sight. Hope is fading.
At the very least, PCAs should be able to count on good health care for ourselves and our loved ones while providing years of service to the most vulnerable in Connecticut. I am thankful this year for my family, for my patient-consumer continued well-being, and for my remaining strength to endure through this hardship.
We also deserve a future where we can count on other basics aside from health insurance, like paid time off, and the ability to retire someday. The State of Connecticut can, and must, do much better by home care providers like me.