The last thing I ever expected was to be an employer, but that is exactly the situation in which I find myself. I don’t employ people as part of a business, or anything even remotely profitable. I employ caregivers who keep me alive.
Under the Senate’s latest health care bill, my caregivers are at risk of losing their jobs. And if they lose their jobs, my life will be at risk.
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Six years ago, I was diagnosed with a multi-system disease—myalgic encephalomyelitis, or chronic fatigue syndrome—that inhibits my body’s metabolic system. Although the disease differs from person to person, my condition has been degenerative over the years; for more than a year starting in 2015, it left me unable to speak, eat, or lift my head higher than a pillow.
This is the type of physical debilitation that requires a caregiver.
For the past two years I’ve been completely bedridden, and I’ve hired numerous caregivers to perform myriad tasks for me. They have administered my daily oral medications and flushed my IV with syringes full of saline and heparin. They bring me my toothbrush every morning, and they help me go to “the bathroom” by emptying a plastic urinal beside my bed. They help me bathe by placing a flattened inflatable bathtub on my bed, which I scoot onto so they can inflate it around my body. They fill the tub with water so I can clean myself, then they drain it, I towel off, and they deflate the tub so I can crawl out.
These tasks are essential to my health, and I depend on my caregivers to help me perform them. But the stark reality is that I simply couldn’t afford to employ caregivers without Medicaid.
I receive around 48 hours of paid caregiving every week through California’s In-Home Supportive Services (IHSS), which gets half its funding from the federal government. For the 48 hours a week they cumulatively work, my caregivers are paid California’s minimum wage: $10.50 per hour. Because I believe that is an unfair wage for such a demanding job, I supplement their pay as much as I can —usually an extra two dollars an hour.
Under the Senate health care bill, Medicaid would face massive cuts—up to $772 billion by 2026. Combined with the House budget, which was released earlier this week, those cuts would jump to $1.5 trillion. That would almost certainly cause dramatic reductions to caregiving services in California, as well as every other state in the country. But these cuts will not only impact patients; they will take a toll on the caregiving field and other industries related to health care.
“Caregiver” is an umbrella term that includes several job titles, such as personal care aides and home health aides. These positions account for millions of jobs, and past projections have estimated as much as 38 percent growth in some fields by 2024. But since Medicaid is the largest public payer of long-term caregiving services, the cuts outlined in the BCRA could end up eliminating their jobs, along with others in health care and the broader economy. The Center for American Progress has estimated that the House version of the health care bill—which is substantially similar to the Senate bill—would cost the American workforce 1.8 million jobs by 2022.
Each one of those jobs has dozens of lives attached to it and is part of a vital social equation that nobody should reduce. Not only are jobs and livelihoods at stake, but so is the health of millions of people. Cuts to vital services like Medicaid, Supplemental Security Income, and IHSS will tear down decades of efforts to protect and nurture the working poor, sick people, the elderly, and the disabled.
Instead of giving me the help I need to live and potentially improve my health enough that I can once again contribute to the economy, this bill would put my life in an incredibly vulnerable position. It would also take jobs away from health care professionals like my caregivers. This may be acceptable to some, but to the many millions of people whose fates hang in the balance, it’s entirely unacceptable.