(Image via Getty Images)
By Hillary Rothrock
Let me tell you about my amazing brother. Craig graduated high school in the National Honor Society and excelled in academics, as well as leadership, service and character. He participated in community service projects and had a vibrant social life.
He was a gifted artist. Now he mostly has an active life through social media with an occasional lunch date here and there.
At the age of three, Craig was diagnosed with Duchenne muscular dystrophy, a genetic condition characterized by progressive muscle degeneration and weakness, and by the time he was 11, he had lost the ability to walk. He wasn’t expected to live past 18, but because of homecare and family support he is alive at 28.
So, in 2018, I made a drastic career change. I closed down my own brick and mortar store, and I became a caregiver for my brother, because we were out of options for care for him. Contrary to what many people think, I do not sit around all day making sandwiches and watching daytime TV. I care for my brother, who requires 24-hour assistance.
That means dressing, bathing, feeding, toileting, administering medication, every small and big thing you can think of. As rewarding as it is to care for my brother, it is also completely exhausting — physically, mentally, and emotionally. This is essential work, and it too often goes completely unnoticed.
I made Craig a promise when he was ten years old that I would always be there to take care of him and keep our family together and in our home. Even when I didn’t get paid at the beginning, I did not break that promise.
Even though it’s a struggle to take care of my own children (who also have special needs) and my 71-year-old mom on the wages I make — even with my mother working full time to chip in — I will not break that promise.
I do this work because Craig is a living, breathing person, and he deserves to be well cared for like you and me, or even your aging grandparent. But because of a broken healthcare infrastructure, it is incredibly difficult to make sure he is properly taken care of while also taking care of myself.
The average Pennsylvania homecare worker makes only $10.26 per hour and without health insurance, leaving most without the ability to take any time off and constantly worrying about how to keep the lights on. Most homecare workers and caregivers are left with no support and no training to navigate this complicated bureaucratic world.
Between the financial implications of caregiving, the emotional and physical tolls of this demanding profession, and the logistical nightmare of paperwork and insurance companies, we are leaving a whole industry of professionals isolated and on the verge of bankruptcy.
Sometimes this feels like indentured servitude. Being a caregiver can make you feel trapped in a vicious cycle of just living day by day, terrified of whether or not you’ll be able to make ends meet.
There are only 200,000 cases per year of Duchenne muscular dystrophy, and the care required for someone with DMD is intense and very specific. Although a homecare worker should be afforded with all sorts of training, we are actually barely even paid.
But there’s change on the horizon.
U.S. Sen. Bob Casey D-Pa., is fighting to pass the Biden’s administration’s American Jobs Plan, which would invest $400 billion into homecare, provide caregivers with pay and benefits that we so deeply deserve, and protect our rights to good union jobs.
An investment in homecare is an investment in healthy communities and without a healthy community, our whole infrastructure crumbles.
Homecare workers are an essential part of our national infrastructure. Now imagine if 50 million Americans were getting paid fair wages with proper health insurance and paid leave so that they could take time off when needed. Imagine the benefits that would have on our communities.
So, with Senator Casey by my side, and my SEIU union family supporting me, I can continue to fight the good fight of making sure all homecare workers are paid a fair wage, and that our families can be a part of a thriving community.
Investing in home and community-based services will improve the lives of seniors and people with disabilities, increase income for workers, and create jobs.
This is part of basic American infrastructure: when we invest in home and community-based services, we’re improving the fundamental operations of our society. My brother deserves the best care possible, and I deserve to be able to provide that for him. Let’s keep pushing our politicians to do better for us so that families like mine can finally be seen, because we’ve gone invisible for far too long.
Hillary Rothrock is a single mother and SEIU member living in Harrisburg, where she cares for her brother Craig, who has autism and muscular dystrophy.
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