My Son’s Nurse Can’t Survive on What She’s Paid (by Kimberly Crawley)

Kim’s sons Elijah (l) and Isaac (r). [image description: Two young boys with light skin stand closely together with their arms around each other. One wears a blue plaid shirt, the other a yellow t-shirt with the words “Wakanda Forever” and an image of Marvel Comics’ Black Panther.]

My son’s night nurse just told me she’s leaving home health care. Through tears. She cried as she told me how much she loves us all and how hard she tried to make this work. She cried as she told me that the health insurance she is offered doesn’t cover her or her daughter’s monthly medications, and she just can’t go on without making ends meet.

Isaac’s nurse began working with him two years ago, stepping in to become his regular day nurse, which helped him attend school – which he often missed. When his needs changed and we needed a night nurse, she quickly shifted gears to fill that spot. In Virginia, where I live, the median wage for home health care workers is $10 per hour. That’s right, $10 per hour. Nationwide, the median wage is $12 per hour. A living wage is at least $15 per hour.

Isaac’s nurse cried as she promised to stay on as long as it takes to train someone new to do her job because she is so upset with herself for leaving us like this, even though it’s her family that’s been paying the price.

My son Isaac is a hilarious, somewhat mischievous twelve year old. He loves all things Marvel and Mario Kart. He can’t wait to get home from school each day to get outside and play with his friends. Building forts in the woods is one of his favorite things to do.

Isaac had a tracheotomy to help him breathe until June of this year. He still has an open hole in his neck where the tracheotomy was. He also has a feeding tube that delivers nutrition directly to his intestines at night. He requires overnight care as his airway is still being assessed, and his tube feeding requires supervision. Without nighttime care he could dislodge his feeding tube, and it can only be replaced during a hospital stay.

I am exhausted. Beyond exhausted, if that’s possible. I am so tired of working full-time to be the only financial support for my two boys, while juggling their needs, Isaac’s medical needs, and FIGHTING my government for BASIC needs.

For my family, the home health care nurses funded by Medicaid’s Home and Community-Based Services (HCBS) are basic needs. When Isaac has a nurse, I can sleep at night. I know that somebody who is qualified is monitoring Isaac and keeping him safe. Because of this I can be prepared to work the next day, and provide stability and much-needed health insurance for my children.

The U.S. Capitol Dome illuminated at night—in the foreground are a bank of pale blue lights spelling out “Care Can’t Wait.

The Better Care Better Jobs Act (BCBJA), part of the President Biden’s Build Back Better agenda, is currently waiting for a vote in Congress. This bill would raise wages for the direct care workforce, create more jobs, and eliminate state waiting lists for HCBS programs. Over 800,000 Americans are on waiting lists nationwide, and this legislation would create 500,000 new health care jobs, which would, in turn, allow 1.1 million family caregivers to return to work. A September 2021 analysis by Moody’s Analytics shows that passing the BCBJA will have a positive impact on the economy, boosting our GDP and creating more jobs.

Why can’t Congress act to pass this vital legislation? Why can’t Congress provide full HCBS funding of $250 billion we need to make sure that my son, my family, and millions of other Americans have the care we need?

My son needs nursing care so that I can work and support my family. My son’s nurse needs better pay so she can support her own family. But some members of Congress are fighting funding for the Better Care Better Jobs Act and the Build Back Better Act because, they say, the cost is too high. For who? I’m part of the economy, too.

I need your help, because we will all need care at some point. Call your representatives NOW. Demand that they stand up and fight for our families. Tell them our care infrastructure is in crisis. Pass the Build Back Better Act, because Care Can’t Wait.

Kim Crawley is a single mom to two amazing boys, Isaac (12) and Elijah (9). She has been a full-time special education teacher for 20 years, born and raised in Northern Virginia, and she loves raising my boys there. Kim became an accidental activist when her son Isaac lost his health insurance after hitting a lifetime maximum at the age of 15 months. Her family has been proud members of Little Lobbyists since shortly after its inception.