Every day in my job as a school bus driver, I help dozens of students across Lancaster County get to and from school safely. When my daughter’s caregivers can’t make it to our house some mornings, my 7-year-old daughter Iris becomes an unexpected passenger on my bus.
On days when the home care system is totally lacking for my medically fragile child, I have only two choices: either call Iris to be home with Iris, or bring her to work with me. With the current shortage of bus drivers grabbing Pennsylvania and the nation – and not wanting to leave the kids and parents who depend on me embarrassed – I often choose the latter.
I get up at 5:20 am for work, and on the days I have to take Iris out, it’s also her wake-up time. I’m sorry to interrupt his sleep, but I can’t be late for work. I don’t really need to say it again, but the current shortage of school bus drivers has made me too aware of the importance of our work.
Iris receives feeding tube medication: She was born with a rare genetic disorder that encompasses a multitude of conditions, including microcephaly, mild cerebral palsy, kidney abnormalities, autism, and digestive issues.
When she rides with me, I pack a heavy bag full of her supplies: a glucometer, thermometer, stethoscope, clothes, toys, and an insulated lunch box with formula, Pedialyte, and medication. I tie Iris to her special seat while we wait for the bus to warm up.
At each stop, I watch her in my rearview mirror. After the morning’s route was completed, she received a feeding tube in my car in my office parking lot. We rush home to get ready for his virtual school and various therapy sessions.
At 2 p.m., we take the bus back for the afternoon trip. She’ll have to miss her regular 3:30 p.m. meal on the bus, so I’ll give it to her as soon as we get home, but it’s going to ruin the rest of her scheduled feedings for the evening.
This is my daily reality, as a mother of a disabled child, and many parents face a similar situation. We rely on home helpers in a underfunded and understaffed industry.
For years, caregivers have shied away from the profession because of low wages and few advantages. The shortage of home helpers has only worsened due to the pandemic. But workers like me rely on them so that we can go to work every day and earn a living to support our families.
I am grateful for the home health services that have allowed me to re-enter the workforce. Before I learned about home care, I couldn’t keep a job or even get three hours of sleep because she needed to have eyes on her at all times.
For years, I struggled to keep a job because I was constantly leaving to look after Iris when his services broke. One of the reasons I kept my job as a school bus driver for almost 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 the Pennsylvania Department of Disability, there simply aren’t enough staff available to fill those hours. In the last month alone, almost a third of Iris’ care hours were not completed. It was up to me to take over.
In the current system, caregivers, parents and our children are all losers. But President Biden’s Build Back Better plan give me hope that it will not always be so. The bill invests in better training of caregivers, increases wages and creates jobs to address the shortage of caregivers. The House has passed this bill, but the Senate has yet to vote. And every day they wait is another day when kids like Iris don’t get the care they need.
I am optimistic with leaders like Senator Bob Casey who fought hard to include home care in the final bill. I am grateful to be represented by someone who recognizes the difficulties of families like mine. But we have to keep fighting until Build Back Better passes the Senate. As the school bus driver shortage in Pennsylvania continues, drivers like me need support to maintain this vital role.
My situation is not the easiest to manage, but without home care it would be a lot worse. Passing on Build Back Better will help fill caregiver shortages. And that will allow Iris to go to school and help me do the job that I love and that serves my community.
Sabrina Kareha lives in Lancaster County with her family.