Guest Opinion: Essential workers need better homecare options
Each day in my work as a school bus driver, I help dozens of students across Lancaster County get to and from school safely. When my daughter’s homecare workers fail to make it to our house some mornings, my 7-year-old daughter Iris becomes an unscheduled passenger on my bus.
On days when the home health care system utterly fails my medically fragile child, I have just two choices: either call out of work to be at home with Iris, or bring her to work with me. With the current bus driver shortage gripping Pennsylvania and the nation — and not wanting to leave the kids and parents who depend upon me in the lurch — I often choose the latter.
I get up at 5:20 a.m. for work and, on days when I have to bring Iris along, that’s her wake-up time as well. I’m sorry to interrupt her sleep, but I can’t arrive to work late. I don’t really need reminding, but the current shortage of school bus drivers has made me all too aware of how essential our work is.
Iris receives medication through a feeding tube: she was born with a rare genetic disorder that encompasses a host of conditions, including microcephaly, mild cerebral palsy, kidney defects, autism, and digestive issues.
When she rides along with me, I pack a heavy bag full of her supplies: a glucometer, thermometer, stethoscope, clothes, toys, and an insulated lunchbox with formula, Pedialyte, and medication. I buckle Iris into her special seat as we wait for the bus to warm up.
With each stop, I keep an eye on her in my rearview mirror. After the morning route is finished, she gets a tube feeding in my car in the parking lot of my office. We rush home to get ready for her virtual school and various therapy sessions.
By 2 p.m., we are back on the bus for the afternoon route. She’ll have to miss her regular 3:30 p.m. feeding on the bus, so I give it to her as soon as we get home, but it will mess up the rest of her scheduled feedings for the evening.
This is my daily reality, as the mother of a child with disabilities, and a lot of parents face a similar plight. We rely on homecare workers in an underfunded and understaffed industry.
For years, caregivers have been fleeing the profession due to low pay and few benefits. The shortage of in-home caregivers has only worsened because of the pandemic. But workers like me rely on them so that we can go to work each day and make a living to support our families.
I’m grateful for the home health services that allowed me to reenter the workforce. Before I knew about in-home care, I couldn’t hold down a job or even catch three hours of sleep because she needed eyes on her at all times.
For years, I struggled to hold a job because I was leaving constantly to take care of Iris when her services fell through. One of the reasons I’ve kept my job as a school bus driver for nearly four years, is that I can bring Iris with me. It's not ideal, but it’s better than losing my job.
But even though Iris receives 500 hours of home care services through Pennsylvania’s Department of Disability, there just isn't enough available staff to fill those hours. Just this past month, almost one-third of Iris’s care hours went unfilled. It was left to me to pick up the slack.
In this current system, caregivers, parents, and our children all lose. But President Biden’s Build Back Better plan gives me hope that it won’t always be this way. The bill invests in better caregiver training, increases wages, and creates jobs to address the caregiver shortage. The House passed this bill but the Senate has not voted yet. And every day they wait is another day that kids like Iris fail to receive the care they need.
I feel optimistic with leaders like Senator Bob Casey, who fought hard to include home care in the final bill. I’m thankful to be represented by someone who recognizes the struggles of families like mine. But we must continue fighting until Build Back Better passes the Senate. As Pennsylvania’s school bus driver shortage continues, drivers like me need support to remain in this critical role.
My situation isn’t the easiest to navigate, but without home care things would be much worse. Passing Build Back Better will help address caregiver shortages. And that will allow Iris to attend school and help me to go to the job that I love and that serves my community.
Sabrina Kareha lives in Lancaster County with her family.