This Mother’s Day, my hope is that all mothers, but especially those of us who are caregivers to children with special needs, will gain the ability to care for our own health with affordable health care.
I have been personally caring for my son, Yehoshua, at home for the past 10 years.
He was born with Trisomy 13, a chromosomal disorder, and receives funding for home care services through the Medicaid waiver program.
Yehoshua was born deaf and blind. He is a nonverbal child with cognitive disabilities. He is fed with a G-tube and he is wheelchair-bound.
Caring for Yehoshua is both the greatest joy and the greatest challenge of my life.
But surviving on a job without health insurance or paid time off negates some of that joy and makes that challenge more difficult. It even makes life feel impossible at times.
Because he doesn’t walk, talk, see, or hear, my son’s world consists of smell and touch.
He communicates through his hands. I let him touch my face to let him know it’s me – the most trusted, loving, and constant force in his life.
I can tell in his facial expressions, in his behavior, when he’s happy to be with a specific person. When my daughter comes over, he runs his hands through her braids because that’s how he recognizes her.
And when he knows she’s there, he just starts cracking up with laughter. That has always amazed me.
How can he laugh when he’s never heard anybody else laughing? How can he smile when he’s never seen anybody else smiling?
As far as my own health goes, not only am I a cancer survivor but I am also a COVID-19 survivor. And yet, personal care attendants like me do not get access to affordable health insurance through our jobs.
Private insurance is too expensive. And the HUSKY guidelines say that I make too much income to qualify for the state’s health insurance.
I just tell myself that I have to remain healthy. Yet the stress of worrying about getting sick can be detrimental as the actual sickness itself.
Who will take care of my son should anything happen to me? Where will he go? Who will he have? Who will make him smile?
When I’m by his side, sometimes I wonder, “Why do we have to fight for something that should be a basic human right?” Everyone deserves affordable health insurance, sick time, and living wages.
This Mother’s Day, I’m calling on Gov. Ned Lamont to honor the caregivers, the mothers, and the women of color like me who do the invisible caregiving work that happens behind the scenes.
Please recognize and reward our work by giving us the ability to care for ourselves and to support our families too.
Pamela Hunt is a personal care attendant.
OP-ED from CT News Junkie